Chronic Pain and Mindfulness Meditation

Mindfulness Meditation and Chronic Pain

What does the word meditation mean to you? When you hear it, what is the first thing you think of? Someone sitting with their legs crossed, going “ommmmm”?  Someone doing yoga? A different culture or religion?

Mindfulness meditation can have many meanings, but ultimately, it’s a way of connecting with yourself. It’s a mental training practice that involves focusing your mind on your experiences (like your own emotions, thoughts, and sensations) in the present moment. Mindfulness meditation can involve breathing practice, mental imagery, awareness of body and mind, and muscle and body relaxation.

So what does mindfulness meditation have to do with Chronic Pain? Well, it’s a way of focusing on your body and using the relaxation techniques to reduce pain and tension. With the right amount of practice, you can utilize meditation to counteract against various types of pain including joint pain and nerve pain. Here are some tips and tricks to help you.

Getting Started

Learning mindfulness meditation is straightforward, however, a teacher or program can help you as you start (particularly if you’re doing it for health purposes). Some people do it for 10 minutes, but even a few minutes every day can make a difference. Here is a basic technique for you to get started, from the website Very Well Mind:

1. Find a quiet and comfortable place. Sit in a chair or on the floor with your head, neck, and back straight but not stiff.

2. Try to put aside all thoughts of the past and the future and stay in the present.

3. Become aware of your breath, focusing on the sensation of air moving in and out of your body as you breathe. Feel your belly rise and fall, and the air enter your nostrils and leave your mouth. Pay attention to the way each breath changes and is different.

4. Watch every thought come and go, whether it be a worry, fear, anxiety or hope. When thoughts come up in your mind, don’t ignore or suppress them but simply note them, remain calm and use your breathing as an anchor.

5. If you find yourself getting carried away in your thoughts, observe where your mind went off to, without judging, and simply return to your breathing. Remember not to be hard on yourself if this happens.

6. As the time comes to a close, sit for a minute or two, becoming aware of where you are. Get up gradually.

Breathing

Learning how to breathe sounds so simple, but many of us don’t do it properly. We tend to breathe from the chest instead of the diaphragm, which leads to shallow breaths. Deep belly breathing is preferable and can be easily learned. Try breathing in tune with this Hoberman Sphere:

Mindfulness Meditation for Chronic Pain

 

Guided Meditations

Guided meditations can be an excellent resource to help you connect the mind and body. The good people at Mindful.org have several excellent starters that you can access right here.

For content specific to Chronic Pain, these videos may be helpful for you:

Guided Meditation for Chronic Pain #1

Guided Meditation for Chronic Pain #2

Guided Meditation for Chronic Pain #3

Conclusion

Just a few minutes a day is all it takes to learn this simple practice, but the benefits can last for much longer. Used in conjunction with heat, ice and medications, you may find Mindfulness Meditation to be just the thing to ease your Chronic Pain, one breath at a time. Remember,

There Is Always Hope

 

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5 Ways to Handle Fibromyalgia Pain and Stay Energized

Be energized with Fibromyalgia

I’m pleased to feature this guest post by Kunal Patel, who works with a brand called Copper Clothing.

Fibromyalgia is a disorder characterized by musculoskeletal pain all over the body. It is often accompanied by fatigue, sleep andmood issues, and cognitive concerns like memory problems. There are several ways to cope with the disorder, from having the right diet to wearing the right clothes.

The Pain of Fibromyalgia

Here are 5 practical ways to cope with fibromyalgia.

Exercise Regularly

It may seem impossible to exercise when you have fibromyalgia but it is recommended you do. Exercising will help in relieving symptoms of fibromyalgia, especially with the stiffness and restless leg syndrome.

Light exercises and yoga also help in boosting the mood, reducing fatigue, easing the pain, improving blood circulation and improving sleep. You can go for a walk, do strength training, cycling, water aerobics, and swimming.

However, if you are too fatigued, avoid exercisingthat day.

Good Sleeping Habits

The pain and stress can hinder with your ability to sleep. However, sleep is essential to manage fatigue – the biggest symptom of the disorder. 

Practice good sleep habits like:

    • Reduce the noises and intensity of lights in the bedroom
    • Use light and comfortable bed linens like a copper bedsheet
  • Avoid alcohol, caffeine, and smoking
  • Sleep and wake up at the same time
  • Adopt bedtime rituals like taking a soothing bath or journaling before bedtime

Proper Diet

10 Mental Health Habits to Try This 2019 - Eat Well

Your fibromyalgia diet must include lots of vegetables, fruits, dairy, whole grains, and lean meats. This will improve the overall health, lower weight and energize you. Eliminating sugar, foods containing food additives like MSG, and aspartame will be beneficial.

Wear the Right Clothes

Clothing choices can make a huge difference in managing daily pain and fatigue that comes with fibromyalgia. Those suffering from fibromyalgia suffer from a condition where even the slightest touch can be quite painful. Wearing loose-fitting, non-constricting and lightweight clothing is recommended.

Copper compression clothing is also used to treat fibromyalgia pain and stiffness.This disorder can affect any muscle in the body, however, it is most common in extremities like hands and fingers. Copper compression gloves provide fibromyalgia hand pain relief due to their properties. They fight inflammation, retain warmth, improve blood flow and restore movement in the hand.

Choose cotton or copper socks as they don’t have chemicals, wick away sweat and fight odors. The latter also help in reducing pain in the legs and feet.

Stay Positive

There Is Always Hope

Living with pain and overcoming fatigue is not easy and it can get exhausting. Your mind may play tricks on you and be stuck in a loop that you are not accomplishing anything. However, it will do you no good to ruminate on those things. It is essential that you stay positive.

Do not focus on the things that fibromyalgia is preventing you from doing as it will make you feel worse. It is alright to have a bad day– just focus on getting through each day and celebrate little victories.

Consult with your doctor about the best pain management techniques. Take one day at a time and this disorder can become a lot more bearable.

Author Bio –

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Kunal Patel is a young and passionate entrepreneur, fascinated by the workings of the human body and natural solutions for common health problems. He’s single-minded in his aim to make Copper Defence a brand that’s recognized across the globe, by partnering with global brands to make these high-tech materials easily accessible for everyone.

 

You Know What Omega-3s Are – But What About Omega-6s?

Omega3 and Omega6 Good For Your Health

Today I’m featuring an article by Guest Author Nicole Ross Rollender. Her bio is at the bottom of the page. She’s written an excellent post about Omega-3s and Omega-6s and how important they are for our bodies. When you live with Chronic Pain, you know you need to do everything possible to maintain your overall health, and diet can play a part in that. Read on to see what Nicole has to say:

Positivity Quotes

No doubt you’ve gotten the skinny on good fats (hello, omega-3) from your primary care doctor or nutritionist.

You’ve probably heard this before: Omega-3 fatty acids like EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid) are found in fish oils from salmon, krill, tuna, trout, mackerel, and sardines, along with oysters and crabs.

Clinical evidence suggests omega-3s like EPA and DHA help reduce risk factors for heart disease, including high cholesterol and high blood pressure, according to the University of Maryland Medical Center.

You’ll find other omega-3s like alpha-linolenic acid (ALA) in flaxseed, oils like canola and soybean, and nuts and seeds such as walnuts and sunflower, according to the Mayo Clinic.

Omega 3 and Omega 6 For Your Good Health

Along with omega-3s, omega-6 fatty acids play a vital role in brain function, and our normal growth and development. 

Bottom line: Your body needs fatty acids to function, and they pack some major health benefits.

However, not as many people have heard of omega-6s. Here’s what you need to know to ensure you’re getting enough (but not too much) of this important fat in your diet.

What Are PUFAs?

Here’s a quick chemistry lesson: Like omega-3, omega-6 is a type of polyunsaturated fatty acid (PUFA), a fat molecule containing more than one unsaturated carbon bond. For example, oils (like olive oil) that contain polyunsaturated fats are liquid at room temperature, but start to turn solid when chilled, according to the American Heart Association.

“Omega-6s are essential for a whole host of things: proper brain function, stimulating hair and skin growth, maintaining bone health, promoting normal growth and development, regulating metabolism, and maintaining a healthy reproductive system,” says Laura Ligos, MBA, RDN, CSSD, a Real Food registered dietitian at Albany, NY-based The Sassy Dietitian & Designed to Fit Nutrition.

PUFAs offer heart-health benefits when you eat them in moderation and use them to replace unhealthy saturated and trans fats in your diet, according to the Mayo Clinic.

There are saturated fats in animal-based foods, such as meats, poultry, lard, egg yolks and whole-fat dairy products like butter and cheese. They’re also in cocoa butter, and coconut, palm and other tropical oils used in coffee creamers and other processed foods.

Trans fats, also called hydrogenated and vegetable oils, are in hardened vegetable fats like stick butter – and make their way into crackers, cookies, cakes, candies, snack foods and French fries.

A good rule of thumb is to reduce foods high in saturated and trans fats in your diet. Instead, choose foods that include plenty of PUFAs – but don’t go overboard.

All fats, even good ones, are high in calories – they’re nine calories per gram.

The Omega-6/Omega-3 Ratio

Humans evolved on a diet balanced in omega-6 and omega-3 (1:1 ratio) essential fatty acids, according to the journal Nutrients. Today, though, the ratio for many people is a staggering 20:1, contributing to weight gain and other health issues.

“The ratio between omega-6 and omega-3 in our bodies should stay between 2:1 and 3:1,” Ligos says. “You’re heading into dangerous territory when your omega-6/omega-3 ratio is greater than 4:1.”

Both a high omega-6/omega-3 ratio and a high omega-6 fatty acid intake contribute to weight gain, whereas a high omega-3 fatty acid intake decreases your risk for weight gain, according to Nutrients.

In addition, when your omega-6/omega-3 ratios are out of balance, you’re at higher risk for cardiac issues, according to the American Journal of Physiology-Heart and Circulatory Physiology

“When there isn’t enough omega-6 in your diet, essential fatty acid deficiency can occur, leading to excessive thirst and skin lesions, as well as more serious issues like stunted growth, skin lesions, a fatty liver, and reproductive issues or failure,” Ligos says.

Conversely, too much omega-6 (and not enough omega-3) can cause inflammatory conditions including heart disease, elevated blood pressure, diabetic neuropathy, autoimmune conditions and more, Ligos notes.

Not all omega-6 fatty acids promote inflammation though, according to the University of Maryland Medical Center.

Linolenic acid, often found in vegetable oils, is converted to gamma-linolenic acid (GLA) in the body. GLA is also found in plant-based oils like evening primrose oil, borage oil and black currant seed oil.

“There’s research to support taking a GLA supplement, an omega-6 fatty acid, to reduce inflammation, much unlike all other omega-6 fatty acids,” Ligos says.

The body converts GLA to DGLA, which fights inflammatory conditions, and having enough other nutrients like magnesium, zinc, and vitamins C, B3 and B6, promotes that conversion, the University of Maryland Medical Center says.

Where to Get Your Omega-6

The good news is most of us can get the right amount of omega-6 from a healthy diet alone.

“Omega-6 fatty acids are found primarily in vegetable and plant oils, including safflower, sunflower, grapeseed, corn, cottonseed, peanut, sesame, soybean and canola,” Ligos says.

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At one time, researchers believed omega-6 fatty acids metabolized in the body to then inflame and damage artery linings, which could lead to heart disease.

After reviewing the findings, the American Heart Association recommended people eat between 5% and 10% of their daily calories from omega-6 fatty acids.

It’s a good idea to replace saturated fats from foods like meat, butter, cheese and deserts with plant-based foods containing omega-6 fatty acids, including vegetables oils, nuts and seeds is a good first step.

Flaxseed and hempseed oil, nuts, borage oil, evening primrose oil and black currant seed oil, and acai are other healthy sources of omega-6.

About The Author:

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Nicole Rollender is a South New Jersey-based editor and writer. Her work has appeared in Good Housekeeping, Dr. Oz The Good Life, Woman’s Day and Cosmopolitan. She’s the author of the poetry collection Louder Than Everything You Love. Recently, she was named a Rising Star in FOLIO’s Top Women in Media awards and is a 2017 recipient of a New Jersey Council on the Arts poetry fellowship. Visit her online at www.strandwritingservices.com; on Facebook or Twitter.

Why I Blog (About Fibromyalgia, Chronic Pain and Invisible Illness)

Why I Blog About Fibromyalgia, Chronic Pain and Invisible Illness

I have been blogging for a couple of years now and recently someone asked me “why do you blog? What do you get out of it?”

It was a good question, so I thought I’d write a post about my reasons for blogging and what I hope to achieve with this blog site

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Image by TeroVesalainen from Pixabay

Education

When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury. 

Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life. 

Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more. 

The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same. 

Compassion

Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert. 

In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.

My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood. 

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Image by Gerd Altmann from Pixabay

Volunteering

In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others. 

Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better. 

My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be. 

These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul. 

 

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Image by John Hain from Pixabay

Helping Myself

My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill. 

I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.

If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from. 

Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form. 

I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…

There Is Always Hope

A Positivity Pause (Quotes To Help Your Frame Of Mind)

Positivity Quotes

When you live with Chronic Pain, you often find yourself juggling various mood swings. It’s hard to stay positive when you’re in pain all the time, so here are some quotes to help you stay on track or to turn to when you need to be uplifted.

Thanks to Success.com for the following:

1. Keep your face to the sunshine and you cannot see a shadow.”

— Helen Keller


2. “Once you replace negative thoughts with positive ones, you’ll start having positive results.”

— Willie Nelson


3. “Yesterday is not ours to recover, but tomorrow is ours to win or lose.”

— Lyndon B. Johnson


4. “In order to carry a positive action we must develop here a positive vision.”

— Dalai Lama


5. “I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

— Walt Disney


6. “Positive thinking will let you do everything better than negative thinking will.”

— Zig Ziglar


7. “Pessimism leads to weakness, optimism to power.”

— William James


8. “You can’t make positive choices for the rest of your life without an environment that makes those choices easy, natural, and enjoyable.”

— Deepak Chopra


9. “The thing that lies at the foundation of positive change, the way I see it, is service to a fellow human being.”

— Lee lacocca


10. “Positive thinking is more than just a tagline. It changes the way we behave. And I firmly believe that when I am positive, it not only makes me better, but it also makes those around me better.”

— Harvey Mackay


11. “In every day, there are 1,440 minutes. That means we have 1,440 daily opportunities to make a positive impact.”

— Les Brown


12. “I’m a very positive thinker, and I think that is what helps me the most in difficult moments.”

— Roger Federer


13. “Perpetual optimism is a force multiplier.”

— Colin Powell


14. “Attitude is a little thing that makes a big difference.”

— Winston Churchill


15. “Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so let us all be thankful.”

— Buddha

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Quotes for Daily Living from Goodreads

“Think before you speak. Read before you think.”
― Fran Lebowitz, The Fran Lebowitz Reader
“Keep your face always toward the sunshine – and shadows will fall behind you.” 
― Walt Whitman
“Write it on your heart that every day is the best day in the year.”
― Ralph Waldo Emerson
“Do not pray for an easy life, pray for the strength to endure a difficult one”
― Bruce Lee
“Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today?”
― Mary Manin Morrissey
“To handle yourself, use your head; to handle others, use your heart.”
― Eleanor Roosevelt
“Everything in moderation, including moderation.”
― Oscar Wilde
“Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender, be on good terms with all persons. Speak your truth quietly and clearly, and listen to others, even the dull and ignorant; they too have their story. Be yourself. Especially do not feign affection. Neither be cynical about love – for in the face of all aridity and disenchantment it is perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you from misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.”
― Max Ehrmann, Desiderata: A Poem for a Way of Life
“Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.”
― John Wooden
“Dream as if you will live forever; Live as if you will die today.”
― James Dean
“Do all the good you can,
By all the means you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as ever you can.”
― John Wesley
“Always acknowledge a fault. This will throw those in authority off their guard and give you an opportunity to commit more.”
― Mark Twain
“The way to happiness: Keep your heart free from hate, your mind from worry. Live simply, expect little, give much. Scatter sunshine, forget self, think of others. Try this for a week and you will be surprised.”
― Norman Vincent Peale, The Power of Positive Thinking
“The past is behind, learn from it. The future is ahead, prepare for it. The present is here, live it.”
― Thomas S. Monson
“Run mad as often as you choose, but do not faint!”
― Jane Austen, Love and Friendship
“Sit in a room and read–and read and read. And read the right books by the right people. Your mind is brought onto that level, and you have a nice, mild, slow-burning rapture all the time.”
― Joseph Campbell, The Power of Myth
“Be grateful, be smart, be clean, be true, be humble, be prayerful.”
“Never tell your problems to anyone…20% don’t care and the other 80% are glad you have them.”
― Lou Holtz
“Don’t count the days, make the days count.”
― Muhammad Ali
“Live simply, love generously, care deeply, speak kindly, leave the rest to God.”
― Ronald Reagan
“May I share with you a formula that in my judgment will help you and help me to journey well through mortality… First, fill your mind with truth; second, fill your life with service; and third, fill your heart with love.”
― Thomas S. Monson
“Meditate.
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
Shine”
― Siddhārtha Gautama
“In dwelling, live close to the ground. In thinking, keep to the simple. In conflict, be fair and generous. In governing, don’t try to control. In work, do what you enjoy. In family life, be completely present.”
― Lao Tzu
“Being yourself is all it takes. If you want to impress someone don’t be someone else just be yourself.”
― Selena Gomez
“The most important thing to do if you find yourself in a hole is to stop digging.”
― Warren Buffett
“Never lie in bed at night asking yourself questions you can’t answer.”
― Charles M. Schulz
“Before you speak, listen.
Before you write, think.
Before you spend, earn.
Before you invest, investigate.
Before you criticize, wait.
Before you pray, forgive.
Before you quit, try.
Before you retire, save.
Before you die, give.”
― William Arthur Ward
“Think in the morning. Act in the noon. Eat in the evening. Sleep in the night.”
― William Blake, The Marriage of Heaven and Hell
“Breathe properly. Stay curious. And eat your beets.”
― Tom Robbins, Jitterbug Perfume
“It is foolish to tear one’s hair in grief, as though sorrow would be made less by baldness.”
― Marcus Tullius Cicero
There Is Always Hope

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.

When you live with Chronic Pain, everything you do becomes a new challenge. Working, socializing, taking care of kids and/or a home – you still need to do it all and live your life, but now you have persistant pain as your constant companion. Often, you find yourself compromising or looking for better ways of doing things, so your pain isn’t exacerbated.

One of the areas of life with Chronic Pain which is often not talked about is intimacy and your sexual well-being. These are crucial components of a good relationship, but what happens when pain causes you to withdraw from sexual relations, and intimacy begins to suffer? Let’s talk about some of the reasons this happens and what can be done.

Difficulties with intimacy may stem from various causes, including increased pain during sexual activity, a lack of arousal and accompanying vaginal dryness, the inability to reach orgasm, side effects from the use of opioids and other commonly-used medications (eg, certain antidepressants), a past history of sexual abuse, and issues with communication in general.

Because of Chronic Pain, you may find your overall relationship has begun to suffer. A partner may withdraw from you because they don’t know how to help you. This translates to the bedroom, where they may be afraid to cause you more pain or they’re dealing with their own issues regarding your health. Perhaps your partner has become resentful of the extra burden placed on them with your inability to do certain chores now.

A change in standard routines can be upsetting for everyone and this may cause extra fatigue for you both, which also causes you to withdraw from intimacy. Sleep may be what you crave the most, and when your partner wants to have sex, it’s the last thing on your mind.

So how do you overcome these issues? What do you do to make sex more enjoyable for both of you? Here is an expanded list of ideas from a previous post that might be a good starting point.

  • Talk. Make a point of talking openly and honestly about what you are feeling. If there is fear about pain, talk about it and what you can do to alleviate any extra. If you feel disconnected from your partner because it’s been a long time since you last were intimate, talk about those feelings and what you’re worrying about. Do you have scars or extra weight that is causing you concern? Be honest about how you feel. It can be very vulnerable to speak the truth, but it often brings you closer to your partner in the long run.
  • Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
  • Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
  • Oral sex. It can be an alternative or supplement to traditional intercourse.
  • Toys. Use of various sex toys can help loosen inhibitions, relax the body and make intercourse more enjoyable.
  • Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
  • Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
  • Pillows and wedges. Make use of pillows and wedges to help find comfortable positions that alleviate pressure points. A good sex shop can help you find products specifically made for this purpose.
  • Change your expectations. Because reaching orgasm can be almost impossible when you are on certain medications, you may find changing your expectations for sex will help you enjoy lovemaking more. Don’t make orgasm the ultimate goal…just enjoy sex for what it is – a pleasurable experience.
  • Ask for what you need. Listen to your body and what it’s telling you during sex. If certain activities make you feel better, do more of that. Lovemaking doesn’t always have to end in intercourse. Oral sex during a lovemaking session may be all that you desire, and there’s nothing wrong with that.
  • Prepare in Advance. It’s important for people with Chronic Pain to understand that sexual activity often takes a lot of planning. There is not as much spontaneity as there used to be. You may find you need to take your pain medication, apply heat, or stretch before sexual activity. This is also a good time to try increasing your arousal by reading erotica, watching a video, or having your partner give you a massage in the area of your pain.
  • Timing. Choose a time of day when you have less pain as a time to be sexually active. For some people as the day goes on, the pain gets worse, but the opposite also may be true for others. If you have kids, you may have to sneak away for a quickie, but even that is better than no sex at all. If you can arrange for the kids to be away overnight, it gives you plenty of time to relax and set the stage for intimacy.

Sex is meant to be a natural part of a relationship. Just because you live with Chronic Pain doesn’t preclude you from being able to enjoy lovemaking with your partner. You might want to try some of these products to bring a new spark to your bed (or living room or bathroom or…)

Kiss Me Massage Oil

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Lynk Anal Lubricant

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Kegel Exercisor and App

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Female Stimulant

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Personal Wand Massager

Chronic Pain And Intimacy (And How To Spice Up Your Life)

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Chronic Pain And Intimacy (And How To Spice Up Your Life)

Love Worth Making – an Intimacy Book

Chronic Pain And Intimacy (And How To Spice Up Your Life)

Remember,

There Is Always Hope

3 Important Lifestyle Changes (That Can Improve Your Overall Health)

Gut Health and Microbiomes

Today’s post is from Guest Author Amanda Lasater. She’s bringing us information on important Lifestyle changes that can help improve your overall health.

For those of us suffering from Chronic Pain, Chronic Fatigue, or an Invisible Illness, it can feel like you’ve tried pretty much everything to improve your mental and physical well-being. Whether we’re trying a new “miracle” treatment in traditional medicine or an “ancient” holistic therapy, it’s easy to simply feel defeated by our illness. And, like with all illnesses, there will likely never be a one-size-fits-all treatment for these conditions – however, there are lifestyles changes that have been shown to significantly help improve the quality of life for those suffering from many of these life-altering illnesses. The following list contains three powerful choices in your day to day life that, over time, can help reduce the physical and mental anguish that comes along with these maladies.

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Incorporate CBD Oil Into Your Supplement Regimen

Due to the relatively new popularity of CBD oil, we don’t have enough long-term studies to make any definitive statements about its efficacy as a treatment for chronic pain, fibromyalgia, and other invisible illnesses. However, the studies we do have, combined with personal testimonies, are extremely promising. CBD – short for cannabidiol – is extracted from the cannabis plant, but it does not have any of the psychoactive properties of THC (aka, it doesn’t get you “high”). Currently, it is being used for a large number of medical purposes, including:

  • Chronic pain and inflammation
  • Epilepsy, especially in children
  • Social anxiety disorder
  • Insomnia
  • Bipolar disorder
  • Multiple sclerosis
  • Parkinson’s disease
  • Schizophrenia

So far, CBD has been shown to help with three major symptoms of many invisible illnesses: pain, anxiety, and insomnia. And for many suffering from any of these conditions, relief from even just one of these symptoms would significantly improve their quality of life. We recommend that you research CBD and your specific illness to identify all the potential benefits and decide upon which brand and dosage is best for you.  

Address Your Microbiome And Gut Health

The gut “microbiome” is what we call the highly important collection of more than 100 trillion microscopic organisms, or microbiota, that live inside our gastrointestinal tract. These organisms, which include bacteria unique to your body, play a vital role in our health by contributing nutrients and energy, protecting against infection, and supporting the immune system. In addition, we’ve discovered that these trillions of bacteria in our gut communicate directly with the neurons in our brains. More and more studies have found a link between the condition of the microbiome and many illnesses including

  • Inflammatory Bowel Diseases (IBD)
  • Fibromyalgia
  • Depression
  • Anxiety
  • Chronic Pain
  • Autoimmune disorders

Often accompanying gut dysbiosis is an overgrowth of candida (a fungus or yeast), which releases toxic byproducts into your bloodstream and causes a host of unpleasant symptoms. Many doctors report that most fibromyalgia sufferers have had Candida overgrowth. The bottom line is that the gut biome is essential to our health – and addressing and improving your gut health can improve many symptoms of invisible illnesses. The best ways to improve your gut bacteria include eating probiotic foods, eating fiber and prebiotics, avoiding antibiotics (unless absolutely necessary), quitting smoking, reducing alcohol intake, avoiding excessive sugar consumption, exercise, and eating gut-friendly foods like bone broth. 

Start An Elimination Diet To Identify Food-Related Health Issues

The food you’re eating may be the cause of many of your symptoms. For example, gluten has been linked to over 55 diseases. In fact, the major symptoms of gluten intolerance are neurological – not digestive. These common symptoms include: 

  • Chronic pain
  • Chronic fatigue
  • Depression 
  • Cognitive impairment 
  • Sleep disturbances

Gluten intolerance is identified as one of the possible root causes of fibromyalgia by many practitioners of functional medicine – a branch of medicine that aims at treating the underlying cause of an issue instead of the symptoms. The best way to identify if you have any allergies or intolerances is to start an elimination diet and introduce foods one at a time.

While we have all felt defeated by our illnesses, we’ve also learned the importance of always keeping our head up and moving forward. We’re here to tell you that you’re not alone – use these three lifestyle changes to drastically improve your quality of life and “keep on swimming.”

About The Author

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Amanda Lasater is on the editorial and research team at MattressAdvisor.com, a mattress reviews site with the mission to help each person find their best sleep ever.

Cannabis for Fibromyalgia and Invisible Illness (And Ways To Use It)

There has been much talk about the use of Cannabis for treating Fibromyalgia and other Invisible Illnesses. I recently featured John Martinez from Axon who wrote about using CBD Oil for treating migraine headaches. Today I want to share various ways you can use CBD Oils to obtain optimum health. 

While there are many cannabinoids in the plant, THC and CBD are the ones “in charge” for fighting pain and inflammation. What about Hemp? Hemp has some very mild “anti-pain” properties, its use is best suited in other applications. This article by Cannadish gives an excellent breakdown of all three components. 

So how do you use Cannabis to help with a medical condition like Fibromyalgia or MS or arthritis? 

As an example, a Cannabis-infused Topical lotion can be applied to the skin on the areas affected by your health condition, but having a bath is a great solution to have your whole body relax with cannabis oil. It’s especially great before going to bed. One easy way to do this is by making cannabis-infused bath bombs.

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The Process

 

INGREDIENTS

100mg CBD from the dealer of your choice*

1 tablespoon olive oil or coconut oil.

1 cup baking soda

1/2 cup Citric Acid (can be purchased at any soap making store)

1/2 cup Epsom Salt

1/2 cup corn starch

1 teaspoon water Food colouring of your choice

Your choice of essentials oils 30-40 drops

INSTRUCTIONS

  1. Place the dry ingredients in a large bowl and mix together with a whisk.
  2. In a small bowl, mix the liquid ingredients together, including the CBD oil until well blended.
  3. In the large bowl, very slowly add the liquid mixture to the dry ingredients a little bit at a time. The mixture should hold together when squeezed without crumbling.
  4. When well mixed, pack the mixture into your bath bomb mould and pack tightly, then let it dry. Make sure you work quickly so the mixture doesn’t dry out in the process.
  5. Bath Bombs need a full day to fully harden. If they’re not quite hardened enough, they may crumble when you handle them, so check to make sure before taking them completely out of the mould
  6. Makes one good size bath bomb, or several smaller if you are using smaller moulds

*Note: Depending on the strength of the CBD oil you have, the volume (drops or ml) of oil needed for this recipe will vary. For instance, an oil containing 1mg CBD per drop will require 100 drops. Having trouble calculating? Try this CBD oil calculator

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To use your new bath bomb, simply add to a tub of warm, almost hot water and relax for 20 minutes (min). 

Other Forms Of Use

The Patch

Cannabis can be used in other forms as well. Some companies have been selling a Patch. Like the patch used for the diabetic nerve pain treatment, it provides the patient with a controlled release of the medication:

  • Through a porous membrane covering a reservoir of medication.
  • Body heat melting thin layers of medication embedded in the adhesive which will contain high potency cannabinoid (CBD) extract. This extract slowly enters the bloodstream and then penetrates the central nervous system of the patient thus delivering the pain relief sought.

Edibles

This excellent article talks about Cannabis Edibles and the many ways you can enjoy the benefits of this particular form of consumption.  Instructions are given as to dosage, benefits, side effects and more, and it also contains a bit of history as to how edibles came to be so popular. 

The author and I share very similar views that all these forms of ingesting Cannabis are beneficial to those who suffer from Fibromyalgia, MS, Lupus, Arthritis, and more. 

I recommend finding a store near you where you can begin a relationship with the staff to get all your questions answered. Many US States are now allowed to sell legally and Cannabis is legal in Canada as well. 

Get to know the staff, let them show you their favourite products and ways to use Cannabis, and before you know it, you’ll hopefully be finding the relief you’ve been seeking. No, Cannabis doesn’t work for everyone (in fact, I’ve tried it myself and am one of the people that it does nothing for!). Don’t get discouraged right away…try other forms such as the bath bomb if an edible didn’t work for you, or vice versa. 

Cannabis is NOT a miracle cure, but when it works, it can really bring relief to an overwhelmed body. I hope you find this to be true in your case. Remember…

There is always hope

Using CBD Oil In The Bath

Chronic Pain Is A Thief (And How You Can Stop It)

Chronic Pain is a Thief

If you live with Chronic Pain, or know someone who does, you probably know that there’s a lot that is missing from life. Chronic Pain is a thief – it takes from so many areas of your existance, but rarely gives back. I want to talk about this in more detail, so we can hopefully find ways of fighting back.

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Image by mohamed Hassan from Pixabay

Chronic Pain Robs You Of Your Daily Life

Chronic Pain affects every aspect of your health, from the conditions that cause the pain to your everyday normal functions. Moving, exercising, taking care of the house or children…all of these are extremely difficult with Chronic Pain and often something has to suffer in order to get through each day. Perhaps you use more processed foods in your cooking instead of “from scratch” meals. Maybe the laundry goes unwashed for another day so you can spend time with your kids. Whatever the situation for you, you still have to deal with the fact that Chronic Pain has changed your daily life.

Chronic Pain Robs You Of Your Sleep

Painsomnia is the term used for Insomnia that is caused by pain. When you can’t sleep, you effectively lose your ability to function well the next day. Pain at night keeps you from getting the refreshing REM sleep that is so necessary to repairing the body.

There are medications that you can take to enhance your sleep, but they often don’t work and even when they do, you can end up groggy in the morning and feeling “hungover”. That feeling, combined with pain, makes for a difficult day indeed.

Chronic Pain Robs You Of Contributing To Society

If you live with Chronic Pain you may find that you have to give up your job or hobbies in order to function. It can be very demoralizing to leave a career you love or a job that you’ve worked at for an extended period of time. I went on disability in 2009 because pain and brain fog robbed me of the essential skills I needed to do my job well. I was at the top of my career as an Administrative Specialist and Event Planner, and was working at a great company with lots of potential for my future.

After too much time taken off because of health issues, I realized I wasn’t doing anyone any favours by staying at work, so went on short term disability that ultimately ended up becoming long term disability. I was devastated to leave work, but my HR team was helpful and encouraging and made the process easy for me. It took me awhile to realize I was never going to be able to go back to work, but oh, how I cried when it finally hit me.

If you are a volunteer or have special hobbies, you may find you’ve had to give them up as well. It’s hard to watch the world go on while you’re stuck in limbo. Even when you push yourself to maintain a working life or hobbies, you still have to deal with the reality of pain on a daily basis and that makes everything more difficult to manage.

Chronic Pain Robs You Of A Social Life

Living with Chronic Pain makes it hard to socialize with others. When you’re no longer involved in your regular activities such as work or hobbies, you tend to not be invited out to social gatherings with the gang. Even when you are invited, you may struggle to attend functions, or if you do attend, you pay the price for days (or weeks) afterwards.

Sometimes it’s easier to say no to something, knowing how you will end up feeling, but doing so puts you at risk of not being invited to events in the future. It’s a Catch-22 and there is no right answer for how to manage.

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Image by Michal Jarmoluk from Pixabay

Chronic Pain Robs You Of Companionship

If you are in a relationship, Chronic Pain can rob you of the companionship you used to enjoy with your partner. You may have given up work or hobbies, so you have less to talk about, and it’s hard to hear how well someone else is doing when you’re suffering on your own. Sex can become painful and thereby less frequent and intimacy starts to dwindle – even just cuddling can cause discomfort.

You may find your list of friends depleted because no one has time for you anymore. You’re not the same funny outgoing person you were and other people get tired of hearing about your struggles. When you have nothing new to add to the relationship, it slowly begins to die off and the effort of maintaining friendships becomes too much. Especially if you’re not able to go out and socialize like you did in the past.

So how do you manage life with Chronic Pain? How do you navigate this new world that you live in?

Some people find that Chronic Pain strengthens their faith and seek solace with the religion they practice. I personally find that prayer really helps me when I’m struggling – I remember all that Jesus went through in His life and it puts things in perspective for me.

You may find that while you’re no longer able to work, you can manage some volunteer activity based on what it is, and what is being asked of you. I belong to 4 different committees that all have a health focus, but the time requirement for each is minimal. I’m able to attend meetings online when they happen and while I do travel to a different city for one of the meetings, getting out for the day/overnight can be refreshing for the time, even though I know I’ll pay for it later. Just being with grownups discussing how to solve problems helps me realize my brain isn’t dead and I still have a lot to contribute.

If you are no longer working, you may find yourself in a position where you can start a activity for the first time, or devote more time to a long-standing hobby. Even if you’re only able to start reading more or colouring or knitting, it’s something you weren’t able to manage before and that can be empowering. Learning a new hobby doesn’t have to be expensive or difficult, it just needs to be something that brings you joy.

When it comes to socializing, you may be happy to give up a whirlwind of activity and discover that you’re a homebody after all. Perhaps you invite people over to your place more often, instead of going out. You’re able to set the pace which helps you manage your Chronic Pain in a better way.

Chronic Pain is a thief, there’s no doubt about that, but with careful planning, you may be able to trap that thief and get back what’s been taken from you. A cheerful and positive spirit can go along way in helping with that. There’s simply no point in wallowing about the negatives in life as it serves no purpose and only makes you more miserable. Don’t let Chronic Pain rob you of your essential being. Fight back and try to find ways to incorporate joy into your life again. It’s the simple pleasures that give the most reward.

There Is Always Hope

 

It’s Okay To Be Angry About Chronic Illness (I Am!)

The Emotions of Living With Chronic Illness

Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.

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Image by Free-Photos from Pixabay

The Beginning

I want to tackle a hard subject today…the emotions that surround living with a Chronic Illness. Every day, we survive the physical pain, but we don’t always talk about the emotional pain that comes with being ill. Let’s change that now. 

When I first started feeling the effects of Fibromyalgia and Osteoarthritis along with my other Chronic Illnesses, I was generally able to function without a lot of changes in my life. I needed some pain medication but found that it helped and didn’t really alter my life, so ended up having some fairly easy years after my initial diagnosis. 

After a period of time, the medication needed to be increased and new drugs had to be introduced to help combat the increasing pain and symptoms. I started taking Lyrica for my Fibro  – a drug that saw me gain 40lbs in 3 months. This is when I first realized that having Chronic Illness was affecting me mentally – I was pissed about the weight gain but resigned to the fact I’d have to live with it. Thankfully my doctor worked with me to find Cymbalta instead and I managed to lose most of the weight I had gained. 

Thus began a pattern where the drugs would work for a while and then lose their effectiveness, necessitating an increase or change in meds, which triggered more anger and emotion. It was a vicious circle…I just wanted to be rid of the pain I was in, but it was getting harder and harder. The side effects of the various meds being introduced were also debilitating and my anger grew at what my body was putting me through. 

As Things Changed

Then came the point where my body had become so broken down that I needed to leave my job and go on long term disability. I can still remember to this day, 10 years later, how incredibly disappointed in myself I was. My body had betrayed me in every way possible. I was at the top of my career with the opportunity to move into some dream roles and suddenly that was all snatched away from me. Devastated doesn’t even begin to come close to how I felt and I ended up in a depression that was hard to come back from. 

It took me a long time to realize that my feelings were valid and I was entitled to feel how I felt. I thought I had to suck it up for everyone around me, and that just wasn’t a place I was ready for. I hadn’t processed my emotions, and they felt just as raw a year later as they had when I first left work. It was only through taking some Cognitive Behaviour Therapy (CBT) classes that I started to see how I could validate my feelings yet work through them and come out stronger. 

Having these strong emotions was scary though because I couldn’t separate them at first from the actions of being in pain, and just feeling like a failure as a person. It took time to realize that I had not failed, but my body had. Two very different things. By recognizing the difference, I was able to start accepting that I was not a bad person and that I had done nothing to cause this to happen.

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Image by Sarah Lötscher from Pixabay 

It’s Not Your Fault

I didn’t ask for Chronic Pain and Chronic Fatigue. I was simply unlucky enough to be a person to have to live with these conditions and that meant I had to find a healthier way of dealing with the emotions this generated. I was not unreliable, my health caused my reliability to suffer. My worth was not just because of my job, but by virtue of simply being here. I was still a good person who had something bad happen to her. 

Do you see where I’m coming from and what I’m trying to say? Just because you have a Chronic Illness doesn’t make you a bad person. This condition has happened to you and changed you, against your will. Learning how to live with it becomes the new normal. Once I recognized this, I was able to take a step back and start taking my life back again. 

Making Changes

I worked with my doctor to find a treatment plan that benefited me. This included some medication changes and additions, as well as adding healthy new components to my life such as meditation, music therapy, gentle exercise, stretching, beginners yoga and balancing my eating habits. I stopped feeling guilty when I had to cancel or change plans because Illness took over. I couldn’t help it when those things happened, so why blame myself? I put the blame where it belonged…on my Illnesses, and left it there. 

I was blessed to be able to start this blog, so I could reach out to others with Chronic Pain conditions and help them navigate their way through their experiences. It was very empowering for me and I gained back huge amounts of confidence as I wrote articles and posts. Knowing I was reaching others and actually helping them was a huge confidence booster. 

I also found myself able to start volunteering again, and now sit on 4 different committees, all devoted to aspects of health care. I am a member of a Provincial Measurement Working Group, creating a survey for patients in BC, Canada about their ER experiences. I continue to seek out new opportunities to volunteer and was recently nominated for two WEGO Health Awards – one for Best in Show: Blog and one for Best Kept Secret (regarding my blog). You can click here for more information about my nominations. 

To wrap this up, I want to reiterate that I think it’s important to sit with your feelings on a regular basis when you live with Chronic Illness. If you need the help of a professional therapist to process what you’re going through, do it. There’s no shame and definitely no harm in learning how to deal with all the emotions that come with a Chronic condition. In fact, I highly recommend it as a part of your overall treatment plan. 

We go through so much on a daily basis that the notion we’re not affected emotionally is ludicrous. Don’t fall into the trap of being “stoic” and taking the attitude that you can handle things on your own if you truly can’t. Reach out for help, whether it be a professional, a friend, or a spiritual advisor. The peace of mind of knowing you’re not alone in your feelings is precious. And remember…

There Is Always Hope

 

 

Chronic Pain And How To Manage It (With Real Solutions)

Chronic Pain Management

Note: This post contains Affiliate Links which provides an income to me at no cost to you.

In 2016, an estimated 20.4% of U.S. adults had Chronic Pain and in Canada, the numbers say approximately 1 in every 4 people lives with Persistant Pain. Chronic/Persistant Pain is described as pain that extends beyond 3 months of the estimated recovery time of an injury.

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The author dealing with an Atypical Trigeminal Neuralgia flare up

Causes

Chronic Pain can be caused by the following:

  • Past injuries or surgeries
  • Back problems
  • Migraines and other headaches
  • Arthritis
  • Nerve damage
  • Infections
  • Fibromyalgia, a condition in which people feel muscle pain throughout their bodies
  • Other invisible illnesses such as Lupus, MS or Ehlers-Danlos Syndrome.

Symptoms

Chronic pain can range from mild to severe. It can continue day after day or come and go. The pain can feel like:

  • A dull ache
  • Throbbing
  • Burning
  • Shooting
  • Squeezing
  • Stinging
  • Soreness
  • Stiffness

Sometimes pain is just one of many symptoms, which can also include:

  • Feeling exhausted despite rest
  • Loss of appetite
  • Sleep disturbances (I’m writing this at 2:30am)
  • Mood changes
  • Physical Weakness
  • Depletion of energy

Chronic Pain and Your Mental Health

Chronic pain can interfere with your daily life, keeping you from doing things you want and need to do. It can wear on your self-esteem and make you feel angry, depressed, anxious, and frustrated. A persistant feeling of sadness may accompany Chronic Pain. Often, people with Chronic Pain have to give up work, hobbies and activities they enjoy, which leads to further depression, etc.

Fighting Back

With such a high prevalence of Chronic Pain in North America, how does one fight back? How do you manage living with Chronic Pain and still maintain quality of life? There are a number of ways to manage, such as:

Pain Management Courses

These courses can be a combination of Cognitive Behaviour Theraphy, Meditation and Mindfulness, Injections to help with certain types of pain, and group talk where you have the support of others in a healthy moderated environment. There are also online pain management courses for those unable to get to programs in other locations. These include:

Pain Foundations BC

Online Therapy Pain Course

Pathway Through Pain

Mind Body Pain Clinics

On Amazon.com, you can also purchase the following – click each title to link directly to Amazon:

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Pain Management Tools

There are a number of tools available that may help you with your Chronic Pain, and are worth trying.

TENs Unit

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Mindfulness For Pain

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Mindfulness Solution

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Infrared Solutions

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Hypnotic Techniques for Pain Management

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Cognitive Behaviour Therapy Workbook

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It is my sincere hope that some of these suggestions may be just what you need to help you manage your Chronic Pain. Don’t forget to check for Pain Management Services at your local hospital as well. They often run classes of 4-8 weeks that can help you learn how to support yourself.

Medication And More

Medications play a huge role in managing your Chronic Pain. Opioids are in the news now as doctors across North America are being forced to scale back the number of prescriptions they write, but there is still a useful place for them and it’s worth discussing with your doctor to see if you can benefit.

Other medications that help include drugs like Cymbalta, Lyrica and Savella for Fibromyalgia pain, Gabapentin for nerve pain, Amitriptyline for anxiety and pain, and supplements like B12, Glucosimine, Magnesium, SAMe and Vitamin D

This article from Medical News today lists a number of essential oils that can help with pain, and discusses other complementary tools such as acupuncture and yoga.

Yoga For Pain Relief

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Yoga Essentials

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Essential Oils

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I hope that some of these suggestions will help you manage your Chronic Pain and give you some relief. If you have any suggestions for products that work well for you that I should consider in a future post, please feel free to leave a comment using this form

Remember…

There Is Always Hope

 

 

How Myofascial Therapies Helped Relieve My Fibromyalgia Symptoms

How Myofasical Therapies help Fibromyalgia Pain

Today’s post is from my dear friend Michelle at the Zebra Pit. She’s sharing information about Myofascial Therapies and how they relieve the symptoms of Fibromyalgia. Read on!

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Fibromyalgia is a complex condition that often comes with a plethora of symptoms that can be confusing. Fibromites live with constant pain and for many even a gentle, caring pat on the hand can become unbearably painful.  Fibromyalgia is a common comorbid condition to many chronic illnesses, yet doctors often have no idea how to treat our many symptoms. Could it be the biggest culprit in our widespread pain and the formation of our tender points is a little known bit of connective tissue known as fascia.

Fascia and Myofascial Dysfunction

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Fascia is a network of thin connective tissue that runs throughout our bodies in bands and sheets. It is the tissue that helps keep everything in place and is comprised mostly of collagen. It wraps our organs, muscle and bone, creating dividing lines, holding the perfect position for our organs, while keeping our muscles and joints in proper alignment. Because fascia holds the body together and keeps everything in place, it is responsible for the body’s shape and form.

Just like tendons and ligaments, this connective soft tissue can become dysfunctional. Unlike these other soft tissues, the fascia is connected with the autonomic nervous system and some believe it to be a second, separate nervous and endocrine system, based on study findings. When myofascial tissues become dysfunctional, there are a number of things that can go wrong with the fascia, creating a scar tissue that is generally referred to as myofascial adhesions. This may be caused by mechanical or chemical failure or injury to the body.

The worse this dysfunction becomes, the greater the pain and number of myofascial adhesions. If you have myofascial adhesions, you can sometimes feel them as lumps when you run your hand firmly over your skin. Often, they are sore and painful even when using a light touch. These adhesions can also cause small fatty tumors to form. These fat deposits, along with the way fascia pull on the skin can dimple the skin, causing cellulite.

Myofascial dysfunction can be localized or widespread. If you develop tennis elbow (tendonitis), you might just develop myofascial adhesions around the injury. This is why you sometimes still experience pain even after an injury has healed. It could also grow and become widespread, as this interconnected network of tensile fibers tends to interact heavily. When fascia bunches up around one joint in order to protect it, it sometimes pulls other areas of our fascia out of alignment.

My myofascial problems ran from head to toe, causing awful tension headaches that also helped to feed my migraines, small fiber neuropathy throughout my hands and feet, 14 tender points with widespread pain and my fascia had become so tight that it was actually pulling some of my joints out of position. Neither my right hip nor shoulder would stay in place any longer.  Not only that, my myofascial tissue had grown so dense about my skull that it actually inhibited my natural hair growth and I feared I was going bald. I also had the “family curse” of cellulite and varicose veins on my arms and legs. I had regular TMJD pain and my hands were so tender, I couldn’t even knock on a door without bringing tears to my eyes. I also had tremors, it took twice the amount of time for me to go numb at the dentists, and I was constantly freezing, because my fascia were cutting off some of the blood flow and circulation to my skin.

How Myofascial Massage Helps

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In the 3 years I’ve been doing myofascial massage, I haven’t needed a pain medication stronger than toradol to treat my fibromyalgia pain. My head pain is at an all-time low despite suspected CCI and chiari. While my small fiber neuropathy isn’t completely gone at this point, it’s at an all time low and rarely causes issues. All of my joints function more normally and I spend a lot less time dealing with dislocations and subluxations. My hair and eyebrows are now thick and healthy. I rarely have problems with tremors anymore and even my POTS symptoms improved. I’m no longer quite so intolerant of heat or changes to the atmosphere. I have an abundance of hair and my eyebrows have grown in much thicker, too.

The traditional medicine model of pills and surgery offer poor solutions for these symptoms, but there are a number of myofascial treatments available that could improve your symptoms significantly. These therapies can be done in the comfort and privacy of your own home and there are several kinds of myofascial therapy you can have done professionally.

Each of these therapies work a little bit differently, but the long-term results are still largely the same. Each of these tools seeks to destroy any overgrown fascia and help to restore the myofascial lines to a healthy state. It is not always easy work. Some of the tools require a bit more oomph than others and the toxin release can be significant, as can the bruising. It’s worth it. The relief is greater than any of the drawbacks.

Today’s Options for Myofascial Therapy

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Ashley Black Guru has a number of myofascial tools which are very effective. Her videos and book are a great way to learn about how fascia functions, along with some great techniques. While it’s one of the most strenuous forms of myofascial massage, it’s still one I recommend highly. Since you have to put a little grit into it, it will help to build up stamina, strength and new muscle. This is essential to maintaining healthy joints and fascia as your body heals. Black’s methods and tools are highly effective and you can’t go wrong with her tools, though I recommend you go slow and be as gentle as possible. These tools are self-driven so you can control how hard and fast to go, how often to blast and find the best routine to suit your needs. If you need help choosing which tools are right for your specific issues, take a look at my FasciaBlaster Buying Guide.

Ultra Cavitat

An ultra cavitation machine is a handheld personal use version of ultrasound, which is used to help break up myofascial adhesions and release toxins, along with far infrared light to facilitate in healing. It’s deceptively simple to use, but very powerful. After only 4 sessions, my cellulite has decreased so dramatically, I don’t even recognize my own legs anymore. It’s amazing how something that seems so gentle can mold such terrain so dramatically. It’s also an easier, more leisurely tool to use. The pace of this tool is slow and provides a gentle touch, so there’s no pain involved.

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Cupping is another form of myofascial therapy you can opt for. In this therapy, bell like cups are applied to the skin and heat is used to create a vacuum within the cup. The suction helps to pull and release the overgrown fascia. I’ve heard good things about it from others with fibromyalgia and EDS. Cupping can be a passive form of self guided myofascial therapy, but you can also get this treatment done professionally.

Along with cupping, ASTYM is provided as a professional medical service. According to the website, ASTYM regenerates healing by eliminating scar tissue and helps to regenerate new, healthy tissue. The claim about this therapy is that it is very restorative and powerful, but they don’t share how they actually accomplish the therapy itself.

Ultra Cavitation can also be done professionally and may be more effective than self-use tools available on the market. The ultra cavitation is marketed as a tool for beauty, as it works well to create slimming, contouring and weightloss. In fact, all of these tools are marketed for their cosmetic benefits and I’ve certainly reaped my fair share of aesthetic benefits from using these tools. It isn’t my main concern, but it can be a good motivator. I’ve lost over 50 pounds while fasciablasting; a feat that seemed impossible for me due to lipedema. I’ve also really enjoyed the tightening effects on the only thing that reveals my age; my turkey neck.

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It’s also possible to have a massage therapist do your myofascial treatments utilizing your own FasciaBlaster. The number of MT’s using the fasciablaster is small but growing. Many who don’t know also seem quite willing to learn about it and you can really benefit from their knowedge and experience. The best blasting session I ever had was from a licensed MT.

Performing Myofascial Therapy Safely

With all the services and self-use tools available, it seems like there’s a myofascial therapy that’s right for almost everyone: However, it’s important to note that myofascial therapy isn’t for everyone. If you have a blood clotting disorder, take blood thinners or have a vascular disorder such as vEDS, you should not undergo myofascial therapy. Like all therapies, whether doing a self-use tool or seeing a professional, be sure to consult with your medical team to ensure it’s safe for you first. 

Safety should always be paramount when choosing a therapy for your health. Time to carefully research how to perform these treatments should be taken prior to beginning myofascial work. The risk of injury is greater if you don’t know what to watch out for and it’s easy to abuse such a tool, causing severe bruising, fatigue, toxic overload, injury or other problems. These tools need to be used only as recommended, for no longer than the specified time stated for each tool.

People with fibromyalgia and other health problems need to take these therapies very slowly. It is not unlikely that myofascial therapy will be a bit of a shock to the system, so it’s essential to ease your way in. It is possible to make yourself very sick from detox and overdoing it, causing fatigue and even a flare up in your conditions. To avoid this, start slowly and use these tools more gently than recommended. For pacing, I recommend people begin with one body part (a leg) or section (the abdominals) a day and work their way up to more based on tolerance. Take days off in between if your body is struggling with payback. To get more tips on safety and proper usage, take a look at 23 Tips for FasciaBlasting with EDS and Fibromyalgia.

Myofascial therapy may not be for everyone, but for those of us suffering with the daily pain and other debilitating symptoms of fibromyalgia, it can offer significant relief from our daily symptoms. It can even eliminate some of those terrible tender points which develop and are a criterion for diagnosis. As of today, I am down to only five; so few I no longer qualify for the diagnosis. Myofascial therapy may not address your every symptom, but since I’ve begun utilizing it, my life has been a lot more comfortable and I now enjoy many more symptom-free days.

Resources and Further Reading:

BIO:

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Michelle Curtis is a poet and writer with hEDS, POTS and MCAS. She is managing editor for the Zebra Pit where she writes about spoonie health and wellness, as well as art and culture. She has a BA in women, gender and sexuality studies from BGSU and an MFA in creative writing from NU. She lives in greater Cincinnati with her husband David and two Russian Blue cats. She thoroughly enjoys spending time with her family and friends. In her spare time she enjoys books, movies, art, music and the great outdoors (even when her MCAS doesn’t). 

Coping With Loneliness When You Have Fibromyalgia

Girl sitting alone in chair looking out window

The Problem of Loneliness

Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.

 

It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.

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Social Isolation Is Serious

Because of these changes that we have to make – like leaving in the middle of something or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.

Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people. It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:

  • Disbelief from others when you don’t have a clear diagnosis
  • Physical limitations due to pain or fatigue
  • The unpredictability of symptom onset
  • The trigger of symptoms related to noises, smells, etc.
  • Lack of a strong support system (Family and/or Friends)
  • Changes in employment or financial stability
  • Loss of hobbies and outside activities

Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.

What You Can Do About It

When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.

So what can you do when you start having these feelings?

1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.

2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.

3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes

4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.

5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.

6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.

7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.

8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.

Remember, 

There Is Always Hope

10 Top Health & Wellness Trends For 2019

Today I am featuring an article that first appeared on MadebyHemp.com, with their permission. 

Health and Wellness Trends

This year has been a year when most of the world focused on health and wellness in a more holistic manner: both physical and mental wellness. So what can we expect to see in the health and wellness sphere for the rest of 2019?

1. Ayurveda

The 5,000-year-old health system, Ayurveda (in Sanskrit means “knowledge of life”) is responsible for a lot of health movements in 2018. Perhaps the most familiar of which would be the ketogenic diet. Ayurveda is an old system of medicine that incorporates plants and animal products, particularly fats. The practice of Ayurveda involves using fats both for consumption, meaning eating fats like ghee, and external use, like oils for the skin. The practice connects both mind and body in bringing about wellness.

Ayurveda

2. More Plant Based Alternatives

2018 has seen the rise of plant based food, a whopping 23% rise in sales. Gone are the days when the choices we had regarding plant based food were TVP and tofu. Now it is beginning to look like there will be a huge movement in the plant based fish sector. Expect your local Whole Foods aisles to have more plant based fish meat choices. The plant based fish movement stemmed from the awareness of people of the negative impact of overfishing has on our environment.

3. More Sleep

A lot of people, students and workers alike, are severely lacking in sleep. In the coming year, we will have a better understanding of our circadian rhythm and the effects of melatonin and cortisol on our sleep patterns. If these two hormones get out of whack, our circadian rhythm will be thrown out of its cycle and our sleep gets messed up.

Getting a Good Night's Sleep

4. CBD Oil

This year has seen a massive rise in popularity of CBD oil. Despite its being taboo in certain circles, Whole Foods Market’s projection predicts that CBD oil will have an even higher spike in popularity in 2019.

Expect that in the coming year, we will be learning more about the endocannabinoid system or the ECS. This is a major bodily system which compounds like CBD and other cannabinoids interact with. We have seen how CBD oil has helped manage anxiety and we’ve marveled at its anti-inflammatory and anti-seizure effects. Cannabis might also help with setting our sleep pattern straight. It most certainly helps with keeping a lid on anxiety and stress.

5. Eco-consciousness

More and more people are becoming aware of global warming and the dire situation the Earth is currently in. Expect that in 2019, the strong rise of the eco-friendly movement will continue. It is predicted that the use of single use plastics and other single use items will see a further decline and the BYOB (bring your own bag) movement will continue to become more popular.

Eco-Consciousness

6. Mental Health

This year, mental health continues to be given its due importance. People are now realizing that in order to be physically healthy, you need to think about your mental health as well. Hemp based products (like CBD oil) has become a more popular alternative to the usual stress medications. It is predicted that 2019 will see the continuation of this mental health trend.

7. Oat milk

Is oat milk the new soy? This year, sales have grown by an impressive 45%. Lactose averse people have found a good alternative to dairy and soy milk and the rise of its popularity does not seem to be ending soon. Grab yourself a bottle of oat milk this 2019 because it looks like they will be flying off the shelves still.

Oat Milk

8. MCT oil

Aside from CBD, 2018 brought MCT (medium chain triglycerides) oil into the spotlight. This oil is odorless and colorless and stays liquid at room temperature. Putting MCT oil into your coffee, making it “bulletproof” is a good way of boosting your energy. Expect to see MCT become even more popular in 2019 as more people become aware of its benefits.

9. Body Positivity

Thanks to Rihanna and her Fenty brand, body positivity moved from the fringes to mainstream. Body positivity saw a rise in popularity in 2018 as more and more people focus on loving their bodies instead of shrinking them to fit into the mold that society wanted them to look. As more people shift their focus to mental health, this 2019 will see an even bigger rise in the body positivity movement.

Body Positivity

10. Hemp based products

Aside from CBD oil, hemp based products have found their way into our lives from our beauty products, to our food. With the 2018 Farm Bill already signed into law, hemp based farming will be legal nationwide. Expect that in 2019, there will be more choices in hemp based products.

These are the hottest trends in 2019…which ones have you been paying attention to? Remember…

There Is Always Hope

The Creative Side Of Chronic Pain

Some of the most creative people in the world live with Chronic Pain or some type of health challenge. I know, because I’ve gathered a bunch of them together to showcase their talents, right here. Read on!

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Meet Julianne Ryan

Julianne is currently working as an art mentor for an artist with disabilities whilst volunteering her time to Mixed Palette Inc. an inclusive art group in Rockingham.

Julianne uses natural substrates, wood panels and recycled papers and works mostly with watercolour, ink and pencil to create depictions of feelings and experiences. Her latest works are multilayered with overlapping images that explore her experiences of chronic illness while correspondingly relating to her connection with nature. She also produces digital drawings, illustrations of birds and poetry that link to her memories, experiences and to current wellness practices.

She is currently working towards her first solo exhibition to be held at Forest Heritage Centre Gallery, Dwellingup in July/August.

Here are four samples of her amazing art:

JulianneRyan

Art created with Inktense pencil, ink and watercolour on wood panel

Undergrowth series: Inktense pencil, ink and watercolour on wood panel

Julianne can be contacted via Instagram and through the website at Living With Functional Neurological Disorder . She is a proud supporter of this particular charity.

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Meet Christalle Bodiford

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Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband.

Christalle was recently featured on this blog as one of my Interviewees for Interview April. Read more about her here.

Here are some examples of the work she’s done on her incredible book:

Woosah Warrior Mockup

Christalle has provided this next page as one you can print out and colour:

Woosah Warrior Cover Coloring Page-01

For more information, please visit Christalle at her website. She supports the Epilepsy Foundation which can be reached here.

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Meet deni

deni weber is a 67-year-old psychologist turned artist after major traumatic life events triggered multiple chronic illnesses.  A Christ-follower, she uses her God-given gifts of creativity to help and encourage others as well as provide healing for herself, while recovering from limbic system traumas. Formerly bed-ridden for years, she is now finding healing using neuroplasticity techniques – creativity being a major healing component.  She is an artist, singer-songwriter, and writer having several unpublished novels and screenplays hiding in a drawer. Giving credit to God, she declares her works are, “by His grace, and for His glory.”

Here are some examples of deni’s work:

“Welcome to My Garden Series – Purple Butterflies” Acrylics on Linen Canvas – 2.5” x 3.5”

 

“Forgiven” Graphite on 140# Cold Press, 12” x 12”

 

“Hidden in the Woods” PanPastel on Colourfix Board 2.5” x 3.5”

 

Please visit deni on her website to view more of her work. She’s also a huge supporter of The Flute Maker Ministries.

 

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Meet Alisha

Alisha Nurse is a trained broadcast journalist, and enjoys sharing stories. She lives with various chronic health problems including fibromyalgia, depression, anxiety, complex post traumatic stress disorder and borderline personality disorder. These often challenge her creativity but they’ve also been her greatest inspiration to tell stories that make a difference.

She is interested in stories that change the narrative about ethnic minorities, chronically unwell people and those often cast on the sidelines.

Her favourite things include cheese, curries, and interacting with the world around her.

She has graciously allowed me to share one of her poems here:

~~~~~~

I do not recognise myself standing in the many shadows of you.
You, towering, all-consuming, ever present but hidden away,
in plain sight.
Yet I feel you in every part of me. Trying to become me.

Not all monsters lurk like you.
Once awakened, you thrive, clamour, steal, reverberate …through the length and breath of my mortal body,
Silently leaving deadly, indelible traces of your mark, like on a cracked egg, ready to fall apart,
any, anytime now, but still holding itself together as the lines spread and spread,
Until I am finally broken.

Your crack lines emerge in places impossible.
From earthen shell to the soul and heartland of me.
Breaking, smashing, pillaging anything and everything, until I am nothing of my former self; nothing of possible Me(s).

But even broken things can be beautiful.
With floods of tears and streams of blood I shall, I shall put me back together again.
I emerge not the ‘Me’ that once was, was to be or had been imagined with dreams for the future.

I rise as someone, something else entirely–Pained but persevering. Flawed but fluid. Broken but beautiful and believing that I shall conquer.
I am and will be the ‘Me’ that never was imagined.
I am the ‘Me’ that’s emerged from the ashes of pain.
I will not fit your cardboard cutouts or your nicely stencilled stereotypes.

And I am not sorry.

To survive, I change. Constantly.
As the monster morphs so will I – imperfect still, but ready to give bloody hell in all battles to come.

~~~~~

Wow! That’s powerful. To find out more about Alisha, visit her website. She blogs about overcoming chronic illness on www.theinvisiblef.com and shares other fictional works on www.alishanurse.com

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Meet Chrissy Joy Bell

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Meet Chrissy Joy Bell. She lives in Columbus, Oh, USA. and says “I’m married to an awesome guy named Ryan. I received a fibromyalgia diagnosis in 2008 after a serious illness, and I live with chronic migraine. I own a hand made business where I create all sorts of fun and snuggly things out of yarn. I originally used creativity to handle the changes that were happening in my life. Now it gives me a serious sense of fulfillment to know “Hey, I made that!””

Most recently Chrissy self published a coloring book of hand drawn mandalas, a project she began for her own enjoyment that others are now also sharing with her. My hopes for the future are to continue making, and to help others understand their journey in life and with chronic illness.

Here are some examples of the different work that Chrissy has done: 

Can with crocheted

Can Cozy

Crocheted animal

A Favourite Friend

Black & White Mandala

Mandala designed by Chrissy

See more of Chrissy’s work at The Pink Woobie or learn more about her at Find Joy Be Well

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Meet Sergio Garcia

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Description: Sergio Garcia is a Writer at Travelevil.com , he is a music, travel and writing lover, can’t stop thinking about the new article to publish. Sergio believes that travel can heal both soul and body, this is why he joined Travelevil community where both writers and readers share their stories and exchange knowledge about the various travel experience they had in the past.
Beside Blogging and Marketing, Sergio is a certified scuba diver, another world that a lot of people need to discover and enjoy.

Here are some of his favourite photos to share:

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You can reach Sergio via email at travelevil.com@gmail.com 

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I am in serious awe of these talented people! I hope you are too! Please feel free to leave your comments about their work as each of them will be happy to answer questions as well. 

And what about you? How do you show your creativity, whether you live with Chronic Illness or not?  Share in the comments and tell us what you like to do. 

If you’d like to be considered for a future post showcasing even more talent, please fill out the contact form found here and let me know. I’ll be in touch to discuss a second post for later in the year. 

Thank you for joining me. Remember…

There is always hope

25 Things You Should Never Do

The only thing better than an inspirational quote is an inspirational quote about things you should never do. You should never judge a book by its cover. You should never count your chickens before they hatch. You absolutely should never look a gift horse in the mouth (what exactly IS a gift horse??).

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If you want to live your best life, enjoy this list of things you should never do*.

Career and Business Quotes

“Never mistake knowledge for wisdom. One helps you make a living and the other helps you make a life.” – Sandra Carey

“Never become so much of an expert that you stop gaining experience. View life as a continuous learning experience.” – Denis Waitley

“Never mix negative thinking with negative people. Multiplying negatives, in this instance, won’t make a positive.” – Richie Norton

“Never rest on your laurels. Nothing wilts faster than a laurel sat upon.” – Mary Kay Ash

Funny Quotes

“Never play leapfrog with a unicorn.” – Anonymous

“Never moon a werewolf.” – Mike Bender

“Never go to bed mad. Stay up and fight.” – Phyllis Diller

Hope Quotes

“Never deny a diagnosis, but do deny the negative verdict that may go with it.” – Norman Cousins

“Never confuse a single defeat with a final defeat.” – F. Scott Fitzgerald

“Never give up. Today is hard, tomorrow will be worse, but the day after tomorrow will be sunshine.” – Jack Ma

“Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present.” – Marcus Aurelius

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead

Relationship Quotes

“Never love anybody that treats you like you’re ordinary.” – Oscar Wilde

“Never ruin an apology with an excuse.” – Kimberly Johnson

“Never underestimate your power to change yourself. Never overestimate your power to change others.” – H. Jackson Brown Jr.

“Never tell a child that something is too hard for them.” – Mitch Albom, quoting his mother

“Never explain – your friends do not need it and your enemies will not believe you anyway.” – Elbert Hubbard

Personal Development Quotes

“Never let the fear of striking out keep you from playing the game.” – Babe Ruth

“Never stagnate. Life is a constant becoming: all stages lead to the beginning of others.” – George Bernard Shaw

“Never treat time as if you have an unlimited supply.” – Og Mandino

“Never place a period where God has placed a comma.” – Gracie Allen

“Never reject an idea because you don’t have the money, manpower, muscle, or months to achieve it!” – Syed Ather

“Never interrupt someone doing what you said couldn’t be done.” – Amelia Earhart

“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” – Robert Frost

“Never say more than is necessary.” – Richard Brinsley Sheridan

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*Sources include, but are not limited to Brainyquote.com, Oxford Dictionary of Quotations, and Neverisms: A Quotation Lover’s Guide to Things You Should Never Do, Never Say, or Never Forget.

There is always hope

It’s Time To Talk About Spiritual Beliefs

Person standing with open arms to amazing sunrise

Person standing with open arms to amazing sunrise

If you live with Chronic Pain or an Invisible Illness, has someone ever said to you “I’ll pray for you” or “You’re in my prayers”?  What does that mean to you? Do you have Spiritual Beliefs that make those prayers easy to accept? Do you believe in a Higher Power? In God? Or do you believe that when we die, that’s it…there is nothing afterwards. No afterlife, no Heaven or Hell, no God of any type?

I am a Christ Follower. I call myself that because too many things have been done by “Christians” in the name of Christ that taint the Holy name, and I refuse to be associated with them. I’d rather try to live my life the way Christ modelled it, and so being a Christ Follower is a much better way of describing my religious leanings. I believe that He is the only way to Eternal Life and I believe in Heaven and Hell. I don’t talk about this often and almost never in public, but when I say I’ll be praying for you, trust me…I WILL be praying for you.

I also believe that everyone has a right to their own beliefs, and I will never push my beliefs on anyone else. If you want to talk about God with me, I’m happy to do so, but I won’t raise the subject first. It’s not that I’m shy or embarrassed about God, but more that I’m respectful of others, and I prefer to wait to discuss religion until the subject is brought up by others first. I am definitely NOT an Evangelist.

So, why am I talking about it now? Well, the reason is that the question came up in a Chronic Pain forum I belong to when someone asked the forum members “do you have Spiritual beliefs that help you cope?”.

I haven’t seen anyone else answer yet, but I wanted to share my response. Yes, I have a God who loves me dearly and who has a plan for my life. Right now, that plan includes me living with Chronic Pain and Chronic Fatigue from the many conditions I deal with. I think the plan includes these illnesses because He’s using me to help others, through my blog and my volunteer and advocacy work. What type of volunteer and advocacy work do I do?

I work as a Patient Advocate for a group in BC, Canada where I live called the Patient Voices Network.

Patient Partner Logo, Patient Voices Network

Anyone in the Province can join, and it’s designed for ordinary people to have a say in how Health Care is delivered in the Province. Through my involvement, I am currently sitting on 4 committees, plus assisting on a project involving virtual reality and connecting with your doctor, and helping one Provincial Working Group where we are designing a survey to measure Patient satisfaction with their experiences in the Emergency Department and subsequent transfer to an Acute Ward before going home.

The committees I sit on do such work as:

  • Laboratory Quality Control
  • Updating Patient Information Sheets for discharge from Emergency Rooms
  • Quality Improvement Measures for Surgeons
  • The Oversight & Advisory Committee for the Patient Voices Network

I also had the honour of being part of The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain. I recently took part in a “Research for Canadian Anesthesiology” conference and I’m hoping to soon be a Facilitator of a Pain Management Support group. 

So as you can see, my work is wide and varied and brings me together with many different people on a regular basis. I’m often asked “why” do I do what I do. Why do I volunteer my time to all these causes when my own health is so compromised and the truth is, it’s complicated.

I get a lot out of volunteering and blogging. It helps me stay relevant in the world around me. I get to utilize the skills I had while I was still able to work. I like to help people, and I genuinely care about others, especially those who are experiencing the same types of health conditions that I have. And yes, there is a spiritual component to it for me as well. It feels good for me to give back, to help my neighbour, just as Jesus commands me to do in the Bible. To love one another. This is how I show my love. I don’t see it as a duty at all, it just happens to be something I’m passionate about (another blessing from God) and something that’s easy for me to follow.

It’s also these Spiritual beliefs that help me deal with my own Chronic Pain on a day to day basis. I couldn’t do this alone, there’s no way I could live my life every day without God’s help. I put my trust in the Lord to get me through every day…and this is the part that confuses people or scares them off or makes them suspicious. How do you “put your trust in Jesus”?  How does the Lord make things better?

Well, I’d be lying if I said I had the answer to that. All I know is that when I gave my life to Christ in 2001, I made a decision to trust Him, that He would always be there for me, and I’ve never once regretted it. When my pain is that the worst, I know that He suffered more and that He understands. He is with me in my agony and will never leave me. It helps to know that and makes dealing with it easier. I know that He weeps for me. So why doesn’t He heal me?? Because He has a bigger plan for me and I GET THAT. I know I can’t see His plan, but I TRUST HIM. And while I wait, I make the most of my time here instead of wallowing and crying and whimpering about. He gives me the strength to do that and I do my best not to let Him down.

It’s all about Faith my friends. You either have it or you don’t. No one can force you to have faith; it comes from the heart and it’s between you and Him. I believe that God is taking care of me, that His plan is the best plan and that one day, either here on Earth or in Heaven, I’ll find out exactly what that plan is. I’m content to wait until it’s revealed to me. And in the meantime, I’ll keep doing what I’m doing, helping others as best I can, following His guidance. I covet the prayers of others, and if you ask me to pray for you, I will. Heck, I’ll pray for you even if you don’t ask. And if you ask me to take my religion somewhere where the sun don’t shine, I’ll respect your request.

Spiritual beliefs are tricky but they don’t have to be. It’s all about respect for each other, keeping an open mind, and loving your neighbour. Remember…

There is always hope

The Sunshine Blogger Award

Writing this blog brings me a whole lot of satisfaction – I love knowing I’m reaching others, sharing information about Chronic Pain and Invisible Illness and helping others as they live their lives with Disabilities. I don’t expect much in return, so when my blog is recognized, it truly delights me. And that’s why I’m thrilled to say I’ve been awarded the Sunshine Blogger Award

Sunshine Blogger Award

So – what is the Sunshine Blogger Award?

The Sunshine Blogger Award is recognition given to bloggers by their fellow bloggers. The aim is to honour those of which bring inspiration and positivity to the world through their blog content.

Rules for the Sunshine Blogger Award

  1. Thank the person who nominated you and provide a link back to their blog.
  2. List the Sunshine Blogger Award Rules and display the logo on your site.
  3. Answer the Sunshine Blogger Award questions given by the person who nominated you.
  4. Nominate 10 other bloggers and ask them 10 new questions.
  5. Notify the nominees of their nomination.

Thank You

I want to extend my thanks to Davis at Everything Starts With Tea. She nominated me for this award and it totally came out of the blue. I was touched and flattered that she thought of me and liked my blog enough to consider it for this award. Thanks Davis…I appreciate it so much!

Questions

What has been your biggest achievement?

My biggest achievement in blogging has been being nominated for 3 WEGO Health Awards for this year (2019)

What is your motivation to blog?

I like knowing that my blog is reaching people who live with Chronic Illness and is helping them to find answers and affirmation that they are not alone. I work hard to bring information and humour to my posts – I want people to feel this is a solid resource when they have Chronic Pain, Chronic Fatigue, Fibromyalgia or Invisible Illnesses.

What’s one thing you wish to accomplish before you die?

I would love to take a “Round the World” cruise before I die.

What’s your greatest dream in life?

There are two things – seeing my kids and grandkids have happy healthy lives and to find a cure for Fibromyalgia.

What’s your favourite book and why?

Furiously Happy by Jenny Lawson. It’s a hilarious account of her life with mental illness and is truly “laugh out loud” funny!

Pick any moment in life you feel has defined you the most and tell us, why do you feel that’s the case?

I think it’s when I was a single parent and had just started my first job. I went into a position as a receptionist where there were 12 incoming lines, and the computer system was completely different than what I had just been taught in the computer courses I’d been taking to prepare me for work. I knew at that moment I could either sink or swim and I chose to swim. I learned the new system in no time, mastered all those phone lines and discovered I LOVED doing administrative work – I was well suited for it. I thrived and never looked back.

If we were all colours, what colour would you be and why?

I would be pink! Pink is happy and light and cheerful and always makes you feel good. Even when it’s dark pink, it’s still pretty!

Tell me, what is one mistake you’ve made that you’ll never make again?

I will never marry again!!!  LOL…that’s because I finally got it right with my current husband…my second attempt.

If you had the ability to fix one of the world’s problems, which would you choose to fix?

I would choose to end world hunger. With a full belly, you can achieve so much, but when you’re starving, everything else is a huge challenge.

You’ve been given a genie lamp – what three wishes are you asking the genie to grant?

  1. Unlimited wealth
  2. Eliminate World Hunger
  3. Another lamp

Nominees

Cindy Lauderdale – Cindy Goes Beyond

Alice Henry Whitmore – LutheranLiar

Rebecca Moon Ruark – Rust Belt Girl

Marian Wood – Just Muddling Through Life

Esme Slabs – Esme Salon

John Rieber – John Rieber.com

Fancy Paper – Fancypaperblog

Peabody Amelia – You Can Always Start Now

Jpr Arv – Jaipur Thru My Lens

Taylor Kozak – Best Wishes, Taylor

 

My Questions

  1. What is your favourite movie and why?
  2. Where is the best place you’ve ever travelled to?
  3. Tell us about a life lesson you’ve learned
  4. What is the best advice you could give to an up and coming, new Blogger?
  5. What was your favourite class in High School and why?
  6. Why did you start blogging?
  7. Do you have a blogging goal?
  8. What is your favourite food?
  9. Is there a tradition from your heritage you’d like to share?
  10. What is your favourite holiday memory?

So there we go…the Sunshine Blogger Award! I hope you enjoyed reading through this and to those of you I’ve nominated, I hope you appreciate how much I care about you and your blog. Please accept the honour in the spirit it’s been given, but if for some reason you are unable to participate, don’t feel bad!!!  I know that some people prefer not to share in these awards and my feelings will NOT be hurt in any way if you choose to pass.

Share with your friends and feel free to nominate your own winners! Remember…

There Is Always Hope

Changing Doctors When You’re Chronically Ill

Closed sign on Doctor Office Door

For those with “invisible” illness, it’s difficult to find a doctor who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.

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So what happens when you find that Physician and then they move on?

I started out by seeing a Naturopathic Doctor in Victoria because I needed nutritional care. My previous doctor had supplied me with enough of my prescriptions to last for 3 months, so that wasn’t as big a concern for me. Dr. Holewa let me know that a new GP would be opening his practice in the same clinic she was located and I called to be put on the waiting list to belong…news about the new doctor had already started circulating in the community and everyone was signing up! 

I was still able to get an appointment though, for the last day before the Christmas holidays in 2013. It was basically an interview between the Doctor and me, to see if we were a fit and if he was willing to take me on as a patient, given my challenging health history. Dr. Leong and I really hit it off and he agreed to accept me into his practice (along with my husband). What a relief!

Now, I don’t know what it’s like to try and find a doctor where you live. If you are in the USA, I believe it’s fairly easy. The problem is finding the RIGHT doctor…one who meshes with you in terms of beliefs and who blends with your personality. You want strong medical knowledge, a good office staff, decent parking and hours and the feeling that you’ve found “the best” when you see him/her. I found all of that with Dr. Leong and so we began a 5-year patient/doctor relationship that took us through all my health problems, including my hip replacement, brush with skin cancer and more. And then one day, he told me he was leaving the practice and moving to a smaller town up-Island. 

 

Closing The Practice

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The word I heard most from his other patients has been “devastating,” I absolutely concurred. Dr. Leong was highly respected and well loved and the thought of being without him was almost too much to take in. His main reason for leaving was that he wanted to live in a smaller town, and at first, I thought I would simply continue to see him, as his new practice was only a 30-minute drive away. The reality though was that there were no buses that took me there and I would be forever reliant on my husband taking time off work to drive me. That just wasn’t feasible so not only was I losing a good Doctor, I was going to have to find a new one too (there were no plans to replace him in the clinic). 

What’s the big deal? Well, as I said, there is a shortage of doctors in my Province. Recommendations filled my email, but the fact was no other doctor in town was taking on new patients. It looked like most of us were going to be resigned to using Urgent Care for our medical treatment. The thought of that filled me with dismay. I needed a good working relationship with my Doctor because of my history and that simply wouldn’t happen in an Urgent Care facility. 

Then one day, about three weeks after first receiving the news, word came from the office receptionist that there was a new doctor in town who would be taking on a limited number of new patients. My clinic’s receptionist faxed the referral to the office where this new Doctor would be setting up – not that far from where I was currently going. It seemed that this Doctor had requested from several medical offices that they send their “best patients” to her…and I was one of them! Dr. Penny Wilson agreed to take me on along with my husband! What a relief!! She is here for a year from Australia but promised that if she decided to go back home at the end of the year, one of the other doctors in the new clinic would take us on. My relief was immense.

 

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Conclusion

For those of you who are going through this situation right now, you have my sympathy and my empathy. It can be frightening to be left without a safety net. Keep asking at other offices about being put on a waiting list, and check with your family and friends to see if their doctor can take you on because of your relationship and closeness.

So what DO you do when your doctor leaves and there is no doctor to take over? I wish I had an answer for that. Many doctors have replacements come in when they leave, or the clinic they are leaving hires someone new. When that’s not in the works, you can be left scrambling and in the case of being a Patient with Chronic Pain, that’s so frustrating. Frequent visits are normal because of medication changes, new symptoms to be checked and old symptoms revisited. My best advice is to check with the Doctor who is leaving and ask if there is a succession plan. What do THEY recommend you do?

Having a Doctor leave his practice is a scary prospect. I hope that you never find yourself in the same position I was in, but if you do…I hope it works out well like it did for me. Keep the faith…remember,

There is always hope 

10 Celebrities Who Live With Fibromyalgia

Fibromyalgia is a condition that affects millions of people in North America. While typically thought of as an “everyday person”s condition, there are a number of celebrities who live with Fibromyalgia who have talked about it in public. It’s helpful to know we’re not alone, and because of these people, Fibromyalgia is starting to gain more recognition.

Here is a list of 10 Celebrities who live with Fibromyalgia.

Lady Gaga

LadyGaga

Lady Gaga is perhaps the most well-known celebrity with Fibromyalgia. After struggling with chronic pain for many years, she confirmed in September 2017 that the cause of her pain was fibromyalgia.

In her Netflix documentary “Gaga: Five Foot Two,” released on September 22/18, Gaga opened up about the challenges of finding treatments and coping techniques to help manage her symptoms. She is seen using ice packs and trying deep massage and dry needling as ways to help manage the pain.

“I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other” Gaga said in a recent tweet.

Morgan Freeman

Morgan Freeman Best Movies and TV Shows

Morgan Freeman is the actor best known for roles in The Shawshank Redemption, The Bucket List with Jack Nicholson and for winning an Academy Award for his role as a beaten up cornerman for Clint Eastwood in Million Dollar Baby.

In 2008, Morgan Freeman was involved in a car crash that left him with multiple injuries, including a shattered left arm. He went through a 4-hour long surgery to save his arm and has talked in several interviews since he continues to experience “excruciating” nerve pain and now lives with fibromyalgia.

In 2015 he told The Daily Beast he treats the pain with marijuana. “Marijuana has many useful uses,” he says. “I have fibromyalgia pain in this arm, and the only thing that offers any relief is marijuana”.

Lena Dunham

Though she had previously been vocal about her struggles with endometriosis and chronic pain, Lena Dunham revealed in an Instagram post in October of 2018 that she has fibromyalgia. She described what it’s like to have an “invisible” illness like fibro, writing, “I appear to be totally able-bodied but it’s complex, and I am just trying to do everything required to maintain a life of joy and service. My work costs everything I have. This is fibromyalgia. It’s little understood and so even though I have a lot of knowledge and support it’s hard to shake the feeling I am crazy. But I’m not (at least not this way!) and you’re not.”

Dunham continued to say that pain, however it presents — whether it has a visible culprit or not — is valid. She wrote, “Your pain, whatever shape it takes, is yours and so it is real. I believe you when you say you hurt. I have learned time and time again how important it is to believe.”

Sinead O’Connor


Sinead O’Connor is an Irish singer-songwriter who stepped away from music in 2003 because she was struggling with fibromyalgia and wanted to take care of her children.

“Fibromyalgia is not curable. But it’s manageable,” O’Connor said in a 2005 interview with HOTPRESS. “I have a high pain threshold, so that helps – it’s the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful.”

Sinead returned to the music scene in 2005. Despite numerous setbacks, she said she hopes to continue singing and doing what she loves but stays away from the parts that cause her excessive stress, which can exacerbate fibromyalgia symptoms.

Mary McDonough

“The Waltons” actress Mary McDonough has been very open about her battles with fibromyalgia, lupus and Sjogren’s syndrome. She believes she developed the conditions after having an adverse reaction to breast implants she had inserted in an effort to reinvent herself following the series’ end.

“Within 24 hours I broke out into a rash all over my back and my chest,” McDonough told Smashing Interviews Magazine. “But over the course of the 10 years, I just couldn’t put my finger on that. I just didn’t feel right. The chronic fatigue set in, the rashes, the rash across my nose and the bridge of my face which we now know is like a lupus rash, the joint pain, the muscle stiffness, eventually being diagnosed with fibromyalgia, and then the collagen disorder called Sjogren’s syndrome, my hair fell out and I would be tired all of the time.”

McDonough is now a public speaker, author and workshop leader, often talking with young women about their struggles with body image and self-esteem.

Kyle Richards

“Real Housewives of Beverly Hills” star Kyle Richards said she first became sick while her mom was sick with cancer, but was initially told she was depressed because her mom had passed. 

A friend told her she might have fibromyalgia, so she went to a doctor who specializes in the condition who confirmed her diagnosis. “All of a sudden I felt like I had an answer and I felt better because it causes so much anxiety [not knowing],” Richards said.

Richards has since sought out alternative methods for treating her fibromyalgia pain — on “The Healer,” she worked with Charlie Goldsmith, an “energy healer” who aims to help people reduce their chronic pain.

Janeane Garofalo

Actress and comedian Janeane Garofalo has been very open throughout her career about her struggles with fibromyalgia as well as mental and emotional issues, including anxiety and depression. She has even incorporated her fibro into her stand-up routine, using humour and laughter to cope with the pain she experiences.

“I had no idea I was chronically dissatisfied,” she said about being prescribed an antidepressant for her fibromyalgia.

Michael James Hastings

Michael James Hastings, known for his role as Captain Mike on “The West Wing,” had to retire from being a school teacher at age 35 due to fibromyalgia. It was his chronic pain that led him to move to Los Angeles to pursue a part-time acting career.

Hastings has said that he copes with the symptoms of fibro with natural means, such as supplements, exercise, massage therapy, acupuncture and visits to the chiropractor.

“I also have learned to accept that some days I am not going to be able to keep up with my schedule or other peoples’ schedules and I just need to rest and ‘lighten up,’” he said in an interview with the website Back Pain Relief.

A.J. Langer

a.j. langer

Actress A.J. Langer, best known for her role on “My So-Called Life,” “Seinfeld” and “Three Sisters,” was diagnosed with fibromyalgia as a teenager but continued to pursue acting. After filming “Three Sisters,” Langer took a break to figure out how to manage her symptoms and put her health first. She has experimented with a number of alternative therapies to help her cope with fibromyalgia, including surfing, yoga and meditation.

In an episode of the Aches and Gains podcast with Dr. Paul Christo, Langer said, “There are different levels of learning you go through with fibromyalgia… One is I’m all alone, you know, no one else understands this pain. And then there’s a point you can get to where it becomes universal and you understand that everybody’s got something. I’ve come to terms with the fact that my body has a fragile ecosystem and I’ve gotta tend to it.”

Kirsty Young

Kirsty Young

Kirsty Young, a broadcaster on the BBC Radio 4 show “Desert Island Discs,” announced in 2018 that she would be taking a break from the position due to fibromyalgia. She explained: “Casting away some of the world’s most fascinating people is a wonderful job – however, I’m having to take some time away from Desert Island Discs as I’m suffering from a form of fibromyalgia.”

Young indicated that she hoped to spend some time healing and then return to the show.

 

It’s nice to know that celebrities are just like the rest of us and suffer through the same types of illnesses that we do. I commend all of these people for sharing their stories in the public eye. To them and to you, I say…

There Is Always Hope!

11 Steps For A Better Night’s Sleep

man sleepless in bed

If you ask someone how they slept last night, chances are you’ll get one of two answers – “fantastic” or “not at all”. It seems like a lot of people have trouble getting a good night’s sleep. The reasons can be many – having young children, an uncomfortable bed, too hot, too cold, too much stress…the list goes on.

When you live with Chronic Pain, it’s an entirely different story. Pain is usually the main factor in keeping us awake, and the likelihood of a good night’s sleep is generally not to be expected.  Read on to find out more about what it takes for a good night snooze. 

man sleepless in bed

 

Sleep And Your Immune System

Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye.  Chronic sleep loss even makes the flu vaccine less effective by reducing your body’s ability to respond.

Stock Up on Naps

To stay healthy, especially during the influenza season, get the recommended seven to eight hours of sleep a night. This will help keep your immune system in fighting shape and also protect you from other health issues including heart disease, diabetes, and obesity.  If your sleep schedule is interrupted by a busy workweek or other factors, try to make up for the lost rest with naps. Taking two naps that are no longer than 30 minutes each —one in the morning and one in the afternoon—has been shown to help decrease stress and offset the negative effects that sleep deprivation has on the immune system.  If you can’t swing a half-hour nap during the workday, try grabbing a 20-minute siesta on your lunch hour, and another right before dinner.

Other Healthy Tactics

Person washing their hands

Of course, there’s more to boosting your immunity and guarding against illness than getting ample sleep. It’s also important to practice smart stay-healthy strategies such as washing your hands with soap regularly, avoiding close contact with people who are obviously under the weather and talking with your doctor about getting an annual flu shot.  And remember: Even if you do come down with a case of seasonal sniffles, you’ll be able to bounce back faster if your body is well rested. 

11 Tips For A Better Sleep

  1. Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
  2. Set a bedtime that is early enough for you to get at least 7 hours of sleep.
  3. Don’t go to bed unless you are sleepy. If you don’t fall asleep after 20 minutes, get out of bed.
  4. Establish a relaxing bedtime routine. Use your bed only for sleep and sex.
  5. Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
  6. Limit exposure to bright light in the evenings. Turn off electronic devices at least 30 minutes before bedtime.
  7. Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
  8. Exercise regularly and maintain a healthy diet.
  9. Avoid consuming caffeine in the late afternoon or evening.
  10. Avoid consuming alcohol before bedtime.
  11. Reduce your fluid intake before bedtime.
  12. Take your medications on a regular basis. If you take sleeping meds, take them on a regular basis as directed instead of just hit and miss each night. 

Some Items to Help with Sleeping

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Yolmina 3D Contoured Eye Mask for Sleeping

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ZzzQuil Pure zzz’s Sleep Aid

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Contoured Heating Pad for Neck and Shoulders

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White Noise Machine

Conclusion

Good sleep is available to all of us, but it can take some work to achieve it. Just think of the benefits at the end though…those zzzz’s are worth it!

There is always hope

25 Inspirational Quotes

From time to time, I like to share quotes that I think are beautiful, to help inspire my readers or just make you think. Here are 25 of the most inspirational quotes I’ve found lately to share with you today. 

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  1. Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be?
    Marianne Williamson.
  2. Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
    Dale Carnegie.
  3. Anyone can give up; it’s the easiest thing in the world to do. But to hold it together when everyone would expect you to fall apart, that’s true strength.
    Chris Bradford.
  4. Life is full of screwups. You’re supposed to fail sometimes. It’s a required part of the human existence.
    Sarah Dessen.
  5. Hard times don’t create heroes. It is during the hard times when the hero within us is revealed.
    Bob Riley.4
  6. When you have exhausted all possibilities, remember this: you haven’t.
    Thomas A. Edison.
  7. You can play it safe, and I wouldn’t blame you for it. You can continue as you’ve been doing, and you’ll survive, but is that what you want? Is that enough?
    J.M. Darhower.
  8. Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten.
    Neil Gaiman.
  9. Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead.
    Louisa May.
  10. Be grateful for what you already have while you pursue your goals.
    If you aren’t grateful for what you already have, what makes you think you would be happy with more.
    Roy T. Bennett.5
  11. It’s not about perfect. It’s about effort. And when you bring that effort every single day, that’s where transformation happens. That’s how change occurs.
    Jillian Michaels.
  12. Reach high, for stars lie hidden in you. Dream deep, for every dream precedes the goal.
    Rabindranath Tagore.
  13. Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless.
    Jamie Paolinetti.
  14. When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.
    Harriet Beecher Stowe.
  15. You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.
    Richelle E. Goodrich.7
  16. You never know what’s around the corner. It could be everything. Or it could be nothing. You keep putting one foot in front of the other, and then one day you look back and you’ve climbed a mountain.
    Tom Hiddleston.
  17. If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again.
    Flavia Weedn.
  18. Just because you fail once, doesn’t mean you’re gonna fail at everything. Keep trying, hold on, and always, always, always believe in yourself, because if you don’t, then who will? So keep your head high, keep your chin up, and most importantly, keep smiling, because life’s a beautiful thing and there’s so much to smile about.
    Marilyn Monroe.
  19. Don’t let something make you miserable if you can do something about it. If that’s what makes you happy, go for it.
    Kate Brauning.
  20. A boat is always safe in the harbor, but that’s not what boats are built for.
    Katie Couric.
  21. Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.
    Mark Twain.
  22. Your complaints, your drama, your victim mentality, your whining, your blaming, and all of your excuses have NEVER gotten you even a single step closer to your goals or dreams. Let go of your nonsense. Let go of the delusion that you DESERVE better and go EARN it!
    Steve Maraboli.
  23. I don’t believe in failure, because simply by saying you’ve failed, you’ve admitted you attempted. And anyone who attempts is not a failure. Those who truly fail in my eyes are the ones who never try at all. The ones who sit on the couch and whine and moan and wait for the world to change for them.
    Sarah Dessen.
  24. Even the darkest night will end and the sun will rise.
    Unknown.
  25. Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.
    Harriet Tubman.6


there is always hope

 

 

New Blood Test May Prove Fibromyalgia Exists

Doctor examining patient

For many years now, people with Fibromyalgia have been left in the dark when it comes to having a definitive test for the disease. The only reliable way to make a diagnosis currently is by listening to the patient’s description of symptoms and doing the standard 18 Trigger Point Test, in which you need to have 11 of the 18 tender points to qualify as having Fibromyalgia. 

I’ve written in the past about a company that has come up with what they claim is a blood test that shows Fibromyalgia, but although it’s been approved by the FDA in the USA, it hasn’t been backed by any of the major medical foundations or research hospitals. Now there’s a new research study out and it might prove to be on the right track. 

The research comes from Ohio State University and was reported in The Journal of Biological Chemistry. Here is what OSU is reporting about the study*:

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For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis.

In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success in identifying biomarkers of fibromyalgia and differentiating it from a handful of other related diseases.

The discovery could be an important turning point in the care of patients with a disease that is frequently misdiagnosed or undiagnosed, leaving them without proper care and advice on managing their chronic pain and fatigue, said lead researcher Kevin Hackshaw, an associate professor in Ohio State’s College of Medicine and a rheumatologist at the university’s Wexner Medical Center.

Identification of biomarkers of the disease – a “metabolic fingerprint” like that discovered in the new study – could also open up the possibility of targeted treatments, he said.

Doctor examining patient

Dr. Kevin Hackshaw examines fibromyalgia patient Barb Hartong at
The Ohio State University Wexner Medical Center.

 

To diagnose fibromyalgia, doctors now rely on patient-reported information about a multitude of symptoms and a physical evaluation of a patient’s pain, focusing on specific tender points, he said. But there’s no blood test – no clear-cut, easy-to-use tool to provide a quick answer.

“We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been,” Hackshaw said.

Though fibromyalgia is currently incurable and treatment is limited to exercise, education and antidepressants, accurate diagnosis has many benefits, Hackshaw said. Those include ruling out other diseases, confirming for patients that their symptoms are real and not imagined, and guiding doctors toward disease recognition and appropriate treatment.

“Most physicians nowadays don’t question whether fibromyalgia is real, but there are still sceptics out there,” Hackshaw said.

And many undiagnosed patients are prescribed opioids – strong, addictive painkillers that have not been shown to benefit people with the disease, he said.

“When you look at chronic pain clinics, about 40 per cent of patients on opioids meet the diagnostic criteria for fibromyalgia. Fibromyalgia often gets worse, and certainly doesn’t get better, with opioids.”

Hackshaw and co-author Luis Rodriguez-Saona, an expert in the advanced testing method used in the study, said the next step is a larger-scale clinical trial to determine if the success they saw in this research can be replicated.

The current study included 50 people with a fibromyalgia diagnosis, 29 with rheumatoid arthritis, 19 who have osteoarthritis and 23 with lupus.

We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been.

Dr. Kevin Hackshaw

Researchers examined blood samples from each participant using a technique called vibrational spectroscopy, which measures the energy level of molecules within the sample. Scientists in Rodriguez-Saona’s lab detected clear patterns that consistently set fibromyalgia patients’ blood sample results apart from those with other, similar disorders.

First, the researchers analyzed blood samples from participants whose disease status they knew so they could develop a baseline pattern for each diagnosis. Then, using two types of spectroscopy, they evaluated the rest of the samples blindly, without knowing the participants’ diagnoses, and accurately clustered every study participant into the appropriate disease category based on a molecular signature.

“These initial results are remarkable. If we can help speed diagnosis for these patients, their treatment will be better and they’ll likely have better outlooks. There’s nothing worse than being in a grey area where you don’t know what disease you have,” Rodriguez-Saona said.


Graduate student Didem Peren Aykas uses the experimental diagnostic tool, which measures metabolic activity in the blood, distinguishing fibromyalgia from other chronic pain conditions with near 100 per cent accuracy.
His lab mostly concerns itself with using the metabolic fingerprinting technology for food-related research, focusing on issues such as adulteration of milk and cooking oils and helping agriculture companies figure out which plants are best suited to fight disease.

The chance to partner with medical experts to help solve the problem of fibromyalgia misdiagnosis was exciting, said Rodriguez-Saona, a professor of food science and technology at Ohio State. 
Rodriguez-Saona said for the next study he’d like to examine 150 to 200 subjects per disease group to see if the findings of this research are replicable in a larger, more diverse population. Hackshaw said his goal is to have a test ready for widespread use within five years.

Fibromyalgia is the most common cause of chronic widespread pain in the United States, and disproportionately affects women. The U.S. Centers for Disease Control and Prevention estimates that about 2 per cent of the population – around 4 million adults – has fibromyalgia. Other organizations estimate even higher numbers.

About three in four people with fibromyalgia have not received an accurate diagnosis, according to previous research, and those who do know they have the disease waited for an average of five years between symptom onset and diagnosis. Common symptoms include pain and stiffness all over the body, fatigue, depression, anxiety, sleep problems, headaches and problems with thinking, memory and concentration.

Eventually, this work could lead to the identification of a particular protein or acid – or combination of molecules – that is linked to fibromyalgia, Rodriguez-Saona said.

“We can look back into some of these fingerprints and potentially identify some of the chemicals associated with the differences we are seeing,” he said.

In addition to identifying fibromyalgia, the researchers also found evidence that the metabolic fingerprinting technique has the potential to determine the severity of fibromyalgia in an individual patient.

“This could lead to better, more directed treatment for patients,” Hackshaw said.

Other Ohio State researchers involved with the study were Didem Aykas, Gregory Sigurdson, Marcal Plans Pujolras, Francesca Madiai, Lianbo Yu and Monica Giusti. Tony Buffington, formerly of Ohio State and now at the University of California, Davis, was also a co-author.

The research was supported in part by the Columbus Medical Research Foundation.

~~~~~~~~~~~~~~~~~~~~

These are exciting times to be in research for Fibromyalgia. Remember

There is always hope!

 

*Journal of Biological Chemistry

20 Quotes To Reduce Stress When You Have An Invisible Illness

Sign post in forest that says You Are Now Entering A Stress Free Zone

Having Fibromyalgia, or any Invisible Illness is hard to live with. People can’t see your pain like they can with other conditions, and we often have to put up with the platitudes of “but you don’t look sick”, or “oh, I get aches and pains all the time too”. Hearing these comments over and over can lead to depression, frustration and resentment. Stress builds and makes you hurt even more, and so a vicious circle begins. 

It’s time to read something more positive, words that you can cling to and keep close at heart. These quotes are from a variety of different people who seem to have a handle on anxiety and stress. I hope their words help you. Thanks to Live Purposefully Now for the list:

Ocean with giant rock and the words Stress Free Zone

Quotes

1. Anxiety’s like a rocking chair. It gives you something to do, but it doesn’t get you very far. Jodi Picoult

2. You don’t have to control your thoughts. You just have to stop letting them control you. Dan Millman

3. Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength. Charles Spurgeon

4. I promise you nothing is as chaotic as it seems. Nothing is worth diminishing your health. Nothing is worth poisoning yourself into stress, anxiety, and fear.  Steve Maraboli

5. You can’t always control what goes on outside. But you can always control what goes on inside. Wayne Dyer

6. When you change the way you look at life you literally shape a different life for yourself. Elle Sommer

7. I just give myself permission to suck. I find this hugely liberating. John Green

8. Stress is an ignorant state. It believes everything is an emergency. Natalie Goldberg

9. Don’t try to force anything. Let life be a deep let-go. God opens millions of flowers every day without forcing their buds. Osho

10. Breath is the power behind all things…. I breathe in and know that good things will happen. Tao Porchon-Lynch

11. You must learn to let go. Release the stress. You were never in control anyway. Steve Maraboli 

12. If the problem can be solved why worry? If the problem cannot be solved worrying will do you no good.  Shantideva

13. The key to reducing anxiety is to let each situation be what it is, instead of what you think it should be. Elle Sommer

14. One of the symptoms of an approaching nervous breakdown is the belief that one’s work is terribly important. Bertrand Russell

15. Many a calm river begins as a turbulent waterfall, yet none hurtles and foams all the way to the sea. Mikhail Lermontov

16. The greatest weapon against stress is our ability to choose one thought over another. William James

17. Stress is the trash of modern life we all generate it but if you don’t dispose of it properly, it will pile up and overtake your life. Danzae Pace

18. Rule number one is, don’t sweat the small stuff. Rule number two is, it’s all small stuff.  Robert Eliot

19. Today I refuse to stress myself out about things I cannot control or change. Anonymous

20. If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any moment. Marcus Aurelius

Living A Stress-Free Life

Stress-Free

Re-examine Your Values

Or examine them for the first time. Your values will always make it clear to you what you want in life.

Once you are clear on your values, you can begin to identify the things you could do away with. Those things will probably be your stressors, so this tip helps to clear your mind and prepare for the changes ahead.

Forgive Yourself

You can’t begin to live stress-free if you can’t forgive yourself. If there are issues from your past you haven’t dealt with, you are likely to be filled with stress over them. Living with regrets is also stressful. 

Life is meant to be enjoyed. And it’s a journey, not a destination. Just because you took a detour to the wrong side doesn’t mean you can’t find your way back to the right path. Work toward becoming a better person. Let your mistakes be life lessons. Everyone makes mistakes, remember that. And put the past in the past where it belongs.

Forgive Others

This goes hand in hand with forgiving yourself. Just as it’s important to forgive yourself, it’s equally important that you forgive others for the wrongs they’ve done to you.

Others are just as worthy of forgiveness as you are. Forgiving others frees you more than it frees them and the extra baggage you’ve been carrying around is liberating to let go of as well. 

Accept Your Life Just The Way It Is

No one is promised a perfect life. Though we all strive to achieve happiness and contentment in our lives, it doesn’t always turn out that way. The key to acceptance is to accept it just the way it is. Accepting it doesn’t mean settling in it. It means consciously acknowledging it instead of running away from it in denial.

Whatever your life circumstances, accept them. Only when you accept your life circumstances can you begin to take steps to improve them. This will definitely help you to live stress-free.

Think The Best Of Every Situation

Whatever the situation is that you’re going through, be it divorce, disease, failing at school, getting fired from work, etc., you can still find some good in it. I know that sounds simplistic, but there are always reasons to be grateful as long as you don’t play the victim and accept the circumstances for what they are. 

You still have the power to change things. That power is what leads to a stress-free life. Acceptance can be liberating. 

Be Present In Everything You Do

It’s easy to be preoccupied with other things while we are doing one thing, and this elevates stress. If you are washing dishes, but now you are worried about paying the bills and the kids’ tuition, and the mortgage, then stress is bound to overwhelm you.

Instead, learn to be present in what you are doing. You can teach yourself to think of only washing the dishes. You can compartmentalize everything so that you don’t let your stressors dominate all your time. This way you don’t let stress prevent you from being productive. 

Declutter Your Life

And do this in every way imaginable if you want to live stress-free. People have a lot of stress because they have a lot of material, mental, emotional, financial, intellectual and social clutter. If only they could declutter their lives.

You don’t need all those other things outside of your basic needs. Stop hoarding stuff because managing it means stress. Simplify your life in the best possible way.

Be Grateful

Don’t underestimate the significance of gratitude if you want to live stress-free. Most people can’t get out of stress because instead of being grateful for the good things in their lives, they are busy whining about the bad things in their lives.

Sometimes they whine even about the good things because they’ve become blind to how lucky they are. If you are like that, it’s time to change. Gratitude is the best antidote for stress, so take a spoonful and live stress-free.

Using Vitamins To Help Treat Fibromyalgia

Picture of various vitamins

Fibromyalgia is a difficult condition to treat because no one seems to present with the same set of symptoms. Every person describes their pain in different ways (aching, throbbing, burning) and their pain can manifest in different parts of the body than where you may experience it. One treatment option is to use Supplements to help the body where it may be lacking in a certain substance.

Picture of various vitamins

How Do Vitamins Work?*

A vitamin is a small molecule that your body needs to carry out a certain reaction. Your body has no way to create vitamin molecules itself, so the vitamin molecules must come in through food that you eat. The human body is known to need at least 13 different vitamins:

In the body, proteins, carbohydrates, and fats combine with other substances to yield energy and build tissues. These chemical reactions are catalyzed, or accelerated, by enzymes produced from specific vitamins, and they take place in specific parts of the body.

The vitamins needed by humans are divided into two categories: water-soluble vitamins (the B vitamins and vitamin C) and fat-soluble vitamins (A, D, E, and K). The water-soluble vitamins are absorbed by the intestine and carried by the circulatory system to the specific tissues where they will be put into use. The B vitamins act as coenzymes, compounds that unite with a protein component called an apoenzyme to form an active enzyme. The enzyme then acts as a catalyst in the chemical reactions that transfer energy from the basic food elements to the body. It is not known whether vitamin C acts as a coenzyme.

When a person takes in more water-soluble vitamins than are needed, small amounts are stored in body tissue, but most of the excess is excreted in the urine. Because water-soluble vitamins are not stored in the body in appreciable amounts, a daily supply is essential to prevent depletion.

Fat-soluble vitamins seem to have highly specialized functions. The intestine absorbs fat-soluble vitamins, and the lymph system carries these vitamins to the different parts of the body. Fat-soluble vitamins are involved in maintaining the structure of cell membranes. It is also believed that fat-soluble vitamins are responsible for the synthesis of certain enzymes.

The body can store larger amounts of fat-soluble vitamins than of water-soluble vitamins. The liver provides the chief storage tissue for vitamins A and D, while vitamin E is stored in body fat and to a lesser extent in reproductive organs. Relatively little vitamin K is stored. Excessive intake of fat-soluble vitamins, particularly vitamins A and D, can lead to toxic levels in the body.

Many vitamins work together to regulate several processes within the body. A lack of vitamins or a diet that does not provide adequate amounts of certain vitamins can upset the body’s internal balance or block one or more metabolic reactions*.

Why Do I Need Vitamins?

Optimal nutrition creates a body that is strong and healthy. When you live with Fibromyalgia, you may be at risk of poor nutrition, due to various factors. Some reasons contributing to your fibromyalgia nutrition problems can be:

1) lack of nutrients in the food you consume
2) lack of nutrients in the soil in which your food is grown
3) a spasm in the artery leading to the muscle
4) poor digestion
5) lack of exercise
6) stress (which increases your demand for nutrients)
7) chronic fatigue
8) hormonal imbalances
9) viruses and toxins
10) chronic pain, which makes it difficult to eat

Which Vitamins Are Best For Fibromyalgia

Screen Shot 2019-04-03 at 6.10.26 AM

The above chart can help you determine which vitamins might be best for you. Where possible, it’s always best to get your vitamins from a natural food source, but supplements are fine as well. Talk to your doctor so that the two of you are working together to find a plan that fits with your current medications and lifestyle.

In particular, pay attention to the B Vitamins, Vitamin C, Vitamin D and Magnesium. These four are the powerhouses for Fibromyalgia, working on bones and muscles as well as nerves. Since Fibromyalgia is thought to be a condition in which the messages between the brain and the nerves to the spinal cord are messed up, good nerve function is critical to the care of your Fibromyalgia. Magnesium can help with the heavy muscle pain that Fibromites often feel. The B Vitamins are crucial for maintaining your overall good health, including that of the muscles and nervous system.

Other Supplements That May Help

SAMe

S-Adenosyl methionine, more commonly known as SAMe, is a synthetic form of a compound the body naturally produces.

We need it for proper immune function, and it plays a role in forming cartilage and our DNA.  As we age, our bodies produce less of it, which may explain the increased aches we feel after each new birthday. Taking a SAMe supplement not only lessens chronic pain, but it also can boost your spirits, as it assists in the production and breakdown of neurotransmitters, such as serotonin, norepinephrine and dopamine – brain hormones that influence and regulate moods.

Fish Oil

Because of its omega-3 fatty acids, fish oil has terrific anti-inflammatory properties, which can help reduce fibro pain.  It reduces the body’s production of inflammatory hormones (prostaglandins) and that may mean less stiffness or fewer tender joints.

The recommended dosage is 1 or 2 capsules (or 1 or 2 tablespoons) daily to reduce inflammation and boost your immunity. But check with your doctor first – especially if you take blood-thinning medications, such as aspirin or warfarin (Coumadin).

Ribose

Tight muscles are a common cause of fibro pain. To relax and release, muscles need energy and that’s where ribose supplements come in.

Ribose, a simple sugar, can increase energy by an average of 61% – and cut the pain experienced by fibromyalgia sufferers by an average of 15.6%, according to a 2012 study published in The Open Pain Journal. The author of the study recommends a 5 g dose three times a day.

Brown Seaweed Extract

You may not be familiar with these capsules, but this supplement is one to look for. It’s showing great promise in the fight against chronic pain.

In fact, taking 1,000 mg of brown seaweed extract daily can reduce joint pain and stiffness by 52%, according to a 2011 study from Australia’s Centre of Health and Wellbeing, published in the journal Biologics.  Even better: These benefits kicked in after just one week, so you don’t have to wait long to find out if it’s working for you.

Conclusion

There are many options available to you in regards to Vitamins and Supplements when it comes to treating your Fibromyalgia. Check with your doctor for more information and find the ones that may work for you.

 

*http://cyber-north.com/vitamins/work.html

10 Things I’ve Learned About Chronic Pain

The author showing various pictures of her face in pain

If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.

The author showing various pictures of her face in pain

My many faces of pain

I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.

1. THERE IS ALWAYS HOPE

No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.

2. A GOOD DOCTOR IS TO BE TREASURED

Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain?  Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.

My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.

5. DID I MENTION, THE PAIN NEVER GOES AWAY.

Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.

8. SLEEP IS A VERY GOOD THING

Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.

9. WE ARE ALL WARRIORS

Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.

10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS

For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.

I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.

CONCLUSION

I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,

There is always hope

May 12th Is Fibromyalgia Awareness Day

May 12th is (1)

Fibromyalgia is a Chronic Pain disorder that affects millions of North Americans and others around the world. People who live with this condition experience widespread pain throughout their bodies, along with a host of other symptoms. Sufferers are diagnosed by the “tender points” they have developed over their body as per this illustration:

FibroSymptoms2

In recognition of May 12th, Fibromyalgia Awareness Day, I wanted to share with you a post from the past. It’s titled An Attitude of Gratitude. I wanted to put a different spin on having Fibromyalgia because so often, we focus only on the negative side of illness. It’s natural when you’re chronically ill, but there are reasons to be grateful as well. Read on to see what I mean:

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Are you grateful for your life?  Are you grateful for the things you’ve been given? Are you grateful for Chronic Pain and Chronic Fatigue? What about your other Invisible Illnesses? For Fibromyalgia? I am, and let me explain why.

I have had my Invisible Illnesses for over half my life now, and they have been a predominant part of my life since 2004 when I went into a major flare that I’ve never recovered from. That was the year I had stomach surgery for severe Gastric Reflux disease – a procedure called a Nissen Fundoplication. The surgery itself was successful, but I suffered nerve damage in the sternum area from where an instrument being used was pressed too hard against a nerve for an extended period of time, causing it to be pinched for over an hour.

This caused me excruciating pain that didn’t resolve for almost a year and had me addicted to morphine pills to the point that I was hallucinating. In fact, at one point, the general surgeon called in a Thoracic surgeon, who was going to crack open my sternum to try and fix whatever the problem was – a drastic solution indeed.

I’m grateful this didn’t happen and the Thoracic surgeon had the sense to suggest a drug called Gabapentin for nerve damage which is what he suspected was the problem, and he was right.

I spent almost a year in a hunched over position, trying to “contain” the pain, it was so bad. I ended up having to go for physical therapy and massage in order to loosen up my muscles to where I could stand in a straightened up position again.

I’m grateful for the therapists that helped me.

I’m grateful there are medical teams in place when we need emergency surgery, such as when a cyst I didn’t even know I had on my ovary burst, causing me horrid pain. It needed immediate removal and there was a team to do that. Just like there was a team to remove my gallbladder and my other ovary when it went rogue as well.

And I’m grateful for my four doctors who have worked with me and my overall health issues over the last five years, Dr Leong, Dr Winston, Dr. Wilson and Dr Burnett, my orthopedic surgeon who did my hip replacement.

Okay, you say…it’s easy to be grateful to the people who help us, but how can you be grateful for having Chronic Pain and Fibromyalgia and all the other stuff. Well, I’ll tell you.

When you have Invisible Illness, you tend to miss out on a lot of life. You may have to give up your job or volunteer activities, your hobbies and family life. You end up losing a lot more than you seem to have left. But what having a Chronic illness does is force you to dig deep to FIND what you’re grateful for. I made a list:

  • Sunrises and sunsets
  • Quiet mornings after a good sleep
  • A perfect cup of coffee
  • A day where the kids get along and no one is fighting
  • A day where the cat or dog doesn’t barf all over the place
  • Feeling energetic enough to accomplish a few things on the “to do” list
  • Feeling rested
  • Feeling less pain than normal
  • Being able to go for a coffee date with a girlfriend or two
  • Having dinner with your family together instead of needing to lay down
  • Date night with your spouse
  • Watching a movie together instead of early to bed
  • Having a bath or shower
  • Having enough food on the table and money in the bank
  • Laughter
  • A sense of safety and security
  • A roof over your head
  • Feeling loved
  • Having a close friend you can confide in
  • Books to read and art to admire
  • Social media like Facebook and Pinterest
  • Ice cream or a favourite treat
  • Family and friends to share memories with
  • Vacations

I could go on and on…the point is, there is so much to be grateful for, but when you live with Chronic Pain and Chronic Fatigue and Invisible Illness, it’s easy to get stuck wallowing in the negatives, to the point you forget to stop and remember to be grateful.

Take a moment now to list a few things that you’re grateful for and make it a habit each day to say thank you. An Attitude of Gratitude is easy to cultivate, but like a good garden, you need to tend to it every day.

Remember…

There is always hope!

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So, what are your thoughts? Were you surprised at how easy it can be to be grateful? It’s not hard to make a list like I did, and I highly recommend that people give it a try.  We live in a busy and scary world, and this is also a good way to take back a bit of control over the craziness. 

Cultivate an Attitude of Gratitude and see how things change in your life. Even if you don’t make a list, there’s one thing you can count on…

There is always hope

Chronic Pain and Travelling

When you live with Chronic Pain and Chronic Fatigue, travelling for business and/or pleasure can become a real challenge. In the course of my volunteer work, I sit on 4 different committees and one working group, and of those, 2 of them require travel from my home in Langford, BC (just outside of Victoria) to Vancouver on the Mainland. It’s a short flight, only 30 minutes from runway to runway, but with everything that goes into it, it can end up being quite exhausting by the time the trip is over.

Plane and images of travelling

On my most recent trip to Vancouver, I came down with what was either food poisoning or a severe case of gastroenteritis on Thursday evening before my all day Friday meeting. I was in the bathroom every hour all night long, plus I had the stomach cramps and nausea, along with feeling extremely cold yet having the sweats. I haven’t been that sick in years!!!  On top of all that, I had a flare-up of my Trigeminal Neuralgia which combined to make me a very, VERY miserable girl.

I survived to the next day, made it through the meeting still having the shakes and sweating and still with facial pain from the TN, and all I wanted to do was get home as soon as possible. I arrived at the airport for my 7pm flight, only to find out it had been cancelled!!  The next flight was for 8pm so I had no choice but to wait. Then there came notice of a delay for that flight. Then another delay and another delay and still ANOTHER delay. In total, there were five delays for the flight and I didn’t get home until just before 11pm by the time it was all said and done.

I was so wiped out from being sick, from the travel, the intensity of the meeting…just everything. I went to bed immediately and didn’t wake up (except for pee breaks) until Sunday at 8am. I completely slept through Saturday!!

Chronic Pain And Travelling

Travel, in general, is not easy when you have Chronic Pain and being sick makes it worse. If you do have to travel, for business or pleasure, I’ve gathered a few tips to help make YOUR travels a bit easier the next time you’re flying or on the road:

General Considerations:

  • Plan a realistic itinerary.
  • Allow plenty of time.
  • Keep a small, lightweight, hands-free bag with essentials handy and check your main bag if traveling by air.
  • Ask, “How accessible are handicapped accommodations?”
  • Pack for all temperatures and environmental fluctuations. I get hot easily, so I pack clothing that is easy to layer. With careful coordination, I can make many outfits from fewer articles of clothing and lessen the load.
  • Make your bed as close to your bed at home as possible. Ask for extra pillows or blankets. (I always check the closet when I first arrive for these).
  • Use earplugs and a sleep mask.
  • Stay as close to your usual routine as possible, but also adjust with the local time to avoid jetlag.
  • Throw in an extra pair of reading and sunglasses from the dollar store so if you lose them, you don’t mind so much. A book light comes in handy and serves as a light that is easy to access when your unfamiliar hotel room is dark.

Medical-related

  • Carry a medical letter or a medical history summary that includes diagnoses with your physician’s contact information. This letter is handy and often available from your doctor. Ask if they might have such a thing or create your own.
  • Carry your medications with you and follow the tips for traveling with medications.
  • If you need a wheelchair, contact your airline and arrange to have one available.
  • Carry your insurance cards and identification at all times.

In the air, over the rails, and on the road

Amtrack Passenger Train

  • Take advantage of rest stops. Move about and stretch every chance you get. If you are traveling in America, Google has a map of rest stops across the U.S.
  • If you are confined to an airplane seat, keep blood and lymph moving by flexing and relaxing your joints every 20 to 30 minutes. Compression socks are helpful for circulation too.
  • Avoid alcohol and stay hydrated. Dehydration stresses the body as a whole.
  • Carry a healthy snack bag with fresh fruit and non-perishable foods, like protein bars, in case of a delay.
  • Dress for comfort in loose non-restrictive clothing and a pair of comfortable fail-safe shoes. This is not the time to try out those new sandals you bought!!
  • Make sure your plane, train, or bus is on time before leaving home – sign up for notification alerts when offered.

Travel comes with challenges for everyone, but especially those of us who live with conditions that cause chronic pain. But, if we respect our limitations and listen to what our body tells us, we can enjoy our time away from home.

Remember, there is always hope

 

Overcoming Depression With Fibromyalgia And Invisible Illness

Depression Is a Big Storm
If you are a patient with Fibromyalgia or another Invisible Illness, chances are you’ve felt depressed at some point. Depression is prominent in fibromyalgia patients with the risk of getting depressive symptoms at least once being about 90% and getting major depressive disorder (MDD) being about 62–86% in fibromyalgia patients*.
Depression Is a Big StormBy following an appropriate fibromyalgia treatment plan and getting the support of family and friends, you can take control of your fibromyalgia. You can also get control over your symptoms of depression and improve your quality of life.

What Is Depression?

Sadness is a normal reaction to loss or life’s struggles.  Depression surpasses sadness and becomes a problem that affects your whole life. People who are depressed commonly experience:

  • Loss of interest in activities you used to enjoy
  • weight loss or gain
  • thoughts about death
  • Irritability and guilt
  • Anxiety that won’t go away
  • Insecurity and a feeling of helplessness
  • decreased energy
  • difficulty concentrating or making decisions
  • uncontrollable tearfulness

These thoughts, physical changes, and feelings interfere with daily life.

What Is the Link Between Fibromyalgia and Depression?

The stress from fibromyalgia’s pain and fatigue can cause anxiety and social isolation. The chronic deep muscle and tender point pain can result in less activity. That causes you to become more withdrawn and can also lead to depression. It is also possible that anxiety and depression are part of fibromyalgia, just like the pain.

Depression and fibromyalgia can greatly interfere with the way you manage your activities at home or at work. So it is important to openly discuss any symptoms of depression you have with your doctors.

Does Stress Increase Depression With Fibromyalgia?

The stress of living with chronic pain and relentless fatigue can put a person into “overload.”  This results in near catastrophic levels of nervousness and anxiety. Doctors aren’t certain yet whether stress brings on Fibromyalgia or if Fibromyalgia brings on stress. All we know for certain is that it’s a vicious circle and that stress adds to problems of anger and irritability. Most patients feel their pain and fatigue worsening over time.

Is Depression Common With Invisible Illness?

Feelings of depression are common with all types of chronic pain, including headache, back and neck pain, hip pain, shoulder pain, and the pain of fibromyalgia. For example, the prevalence of major depression in people with chronic low back pain is about three times greater than in the general population.

Continuing that vicious circle, being depressed also increases the risk of developing chronic pain. Patients describe greater disturbances because of pain and display more pain behaviours than other pain patients who are not depressed.

One of the worst things that happens is that people with chronic pain such as fibromyalgia start to isolate themselves from family and friends at a time when they often need them the most. They become more focused on their pain, which causes further withdrawal which then causes more depression and round and round it goes.

Ways to Ease Depression With Fibromyalgia

It’s important to understand that fibromyalgia is more than the deep muscle pain and tender points you feel. It encompasses everything about you — your feelings, emotions, and attitude; the way you respond to stress; and the way you communicate with others.

The good news is, though, that while there is no cure, the fibromyalgia pain and symptoms of depression can be successfully treated.

  • Cognitive Behavioural Therapy

One of the most effective treatments for fibromyalgia and depression is a program called cognitive behavioural therapy (CBT). CBT is a type of treatment that helps patients understand the thoughts and feelings that influence behaviours. CBT is commonly used to treat a wide range of disorders, including depression, and anxiety.

This negative self-talk can fuel a sense that negative experiences are catastrophes, which further increases stress, anxiety, depression, and pain.

Your doctor can refer you to a CBT program offered individually (often online) or in a group format.

  • Mindfulness-Based Stress Reduction (MBSR)

This program, which teaches mindfulness to patients, had demonstrated remarkable benefits for reducing fibromyalgia pain as well as anxiety and depression. “Mindfulness is an awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine.

Being mindful means intentionally being present with your breath, thoughts, feelings, and sensations. You can practice mindfulness through meditation, body scans, mindful eating, or mindful movements like yoga or Tai Chi.

You can find an MBSR program offered in your community through your doctor.

  • Music for Pain Management

Music has a powerful effect on the mind – listening to music is associated with the release of dopamine, a feel-good neurotransmitter that is known to have a role in the body’s natural pain-relieving mechanisms. It also produces relaxation, which in turn can help to lift your mood and ease your pain.

A study published in Science Daily found that, when people with chronic pain listen to music for an hour a day, they experienced up to a 21 per cent reduction in pain and a 25 per cent reduction in depression. Additionally, they found that listening to music made participants feel less disabled by their condition and more in control of their pain.

Music that you find relaxing is likely to be the most effective for improving mood and pain levels. However, music doesn’t have to be soft and soothing to be effective. Whatever type of music makes you happy is the best kind to listen to, so go ahead and turn on Rock & Roll, Grunge, Heavy Metal or Classical…it’s your choice.

  • Medication

Medication does have a role in treating depression in people living with Fibromyalgia or other Invisible Illnesses. Only your doctor can know for sure if you require medication so it’s important you seek medical care if you are experiencing the symptoms of depression.  The goal is to help you feel better and often a short course of medication might be an option in conjunction with one of the above treatment options as well.

As you can see, depression can wreak havoc on the body already plagued by Fibromyalgia. Don’t let it isolate you from your family and friends. If you’re experiencing signs of depression, seek help. The sooner you start, the better the chances are of decreasing your pain and suffering and getting you back on track to better health.

There is always hope

*https://www.news-medical.net/health/Fibromyalgia-Depression-and-Anxiety.aspx

Interview April – Terri Sutula

Readers, thank you for checking out our final Interviewee – the fabulous Terri Sutula. 

TerriSutula

Introduce yourself and tell us a bit about you…

Hi, I’m Terri Sutula, and I currently live in the state of Virginia, USA. I’ve been married to the love of my life for the last 21 years, and I’m the Mom of a fabulous grown son. I served 20 years in the Air Force, and after I retired, I went back to school and received my degree in Religion (emphasis church ministry), then obtained my certifications in Personal Training and Health Coaching with the goal of developing a whole-person health ministry. Those plans took a bit of a turn in 2011…. Now I consider my blog to be my ministry, and I hope that by sharing my journey, setbacks and all, I can let people know that there is still life – a great life – after diagnosis, and help them avoid the hopelessness I felt at one point during my illness.

One fascinating fact about me is:

I don’t know if I’d call it fascinating, but it’s something my family loves to tease me about…. I’m constantly making up silly songs to popular tunes. I just can’t seem to help myself haha.

Chronic illness(es)/disabilities I have…

My main issue is fibromyalgia, though I’ve suffered from migraines my entire life, and have also lived with endometriosis, early osteoporosis (probably from the endometriosis treatment), and irritable bowel syndrome for years.

My symptoms/condition began…

Around 2011, my primary fibromyalgia symptoms began after a “snowball” of illnesses, accidents, and a stressful move. I got the flu and soon after that, was diagnosed with subacute thyroiditis, which resolved after about a year. During the same period, I had a couple of bad falls which ended with me doing a face-plant on the pavement. My second fall ended in a trip to the Emergency Room and pain in my ribs for months afterwards. Then, about a year later, we moved to another city, and everything that could go wrong did. I became extremely stressed out, my abdominal symptoms got worse and worse, and the fatigue and whole-body pain became overwhelming.

My diagnosis process was… 

Surprisingly enough, my diagnosis process was pretty quick and easy. I went to my Primary Care doctor, explained my symptoms and my accompanying illnesses, and he checked me for tender points, did some bloodwork, and confirmed what I suspected – that I had fibromyalgia.

The hardest part of living with my illness/disabilities is…

The hardest thing for me to come to terms with is my physical limitations. As I mentioned earlier, I was in the military for 20 years, stayed mentally and physically strong, and was capable of doing pretty much anything I put my mind to. Learning to work within my revised capabilities has really been a challenge, but it has also been a time of growth. It’s given me greater empathy for others and I’ve discovered a new sense of purpose.

 A typical day for me involves…

I’m not sure I have a really “typical” day – I just do whatever needs to be done on a given day. I do try to do some blog work most days, and I break my cleaning chores into different days so I’m not trying to do everything at once. We’ve started picking up groceries for a few days at a time rather than doing a “big” shopping trip once a week. It gets me out of the house and helps me work with my energy levels. It’s a lot easier to run into the store for a few things than to spend a long time shopping. I guess I’d say I do all the “normal” things others do, just on a smaller, more relaxed scale. I’ve learned that pacing my activities is key to keeping flares at bay.

 The one thing I cannot live without is…

 I have to say that there are actually two things I can’t live without, my faith and a sense of humour. Both of these are my keys to not just surviving, but thriving, with fibromyalgia and any other adverse event or circumstance that comes my way.

Being ill/disabled has taught me…

This illness has taught me that it’s okay to ask for help, and it’s okay to not be okay sometimes. I’ve learned that I don’t have to be strong all the time; it’s okay to share the load with others and asking for help isn’t a sign of weakness; it’s actually a sign of strength.

 My support system is…

My absolute biggest supporter is my husband, and I’m so grateful to have him. I’m very fortunate to have a really supportive family in general, but he’s my day-by-day, minute-by-minute supporter. He sees what I go through many days and is always willing to do whatever I need him to do.

If I had one-day symptom/disability-free I would…

I would go hiking on one of the beautiful trails we have around here. My hubby and I used to love to pack a picnic lunch and go hiking, and unfortunately, my pain and energy levels don’t allow us to do that right now. My goal is to work my way up to at least some of the easy trails.

 One positive of having a chronic illness/disability is…

You find out what’s really important to you when you have a chronic illness/disability. When you aren’t in such a place of “doing” all the time, as I was before I became ill, you can concentrate on the things that really add the most value and joy to your life.

One final thing I want people to know is:

There is hope, and there is a fulfilling life after diagnosis. Your life might not look exactly the way you imagined and you might have to learn to adjust to your “new normal” but this new phase of your life might open up even greater opportunities for you to live a life of joy and purpose.

My links are:

Blog: https://reclaiminghope.blog

Facebook: https://facebook.com/hopereclaiming

Twitter: https://twitter.com/hopereclaiming

Pinterest: https://pinterest.com/reclaiminghopeblog

Interview April – Jennifer Purrvis

It’s time to meet my next guest, the wonderful Jennifer Purrvis!

JenniferPurrvis

Introduce Yourself and tell us a bit about you….

My name is Jen. I grew up in the Houston area but live in Wellington, New Zealand. I moved to New Zealand when I was 19 and have lived in various areas in NZ but have kicked around in the capital city for 11 years. I have one daughter who will be 14 and 4 cats. I am single but formerly married. I’m a terrible cook but enjoy baking. I’m currently studying towards a Bachelor of Science in Psychology and hope to get admitted into a Masters of Forensic Psychology programme once I complete my undergraduate. I run Chronic Illness Cat, mostly on Facebook, but you’ll have seen us on other platforms too. Muffin is a real cat, who lives in France, but her dad is from Nelson in New Zealand. He sometimes comes back for a visit but we’ve never met up, though we should.

Chronic Illnesses/Disabilities I have…

I grew up a child of anxiety and depression. After I had my daughter I became severely agoraphobic and was diagnosed with a mood disorder, not otherwise specified. This would finally be diagnosed as Bipolar Disorder in 2018. I also have PMDD.  In 2007, I nearly lost my life after a doctor bagged an IV of an antibiotic I was orange banded as allergic to. I saw a huge white light. I felt a shock hit my body and felt fire ants start biting all over my body. That’s really all I remember. When I woke up I couldn’t unfold my arms or bear weight on my body. It would take years to regain my independence, my tolerance, my sanity. I was so, so angry about the disability attacking me, the pain I was constantly fighting and everything I was losing. It’s been nearly 12 years and things are so much better. I’m so much happier and freer and independent. However, in the last year, I’ve been diagnosed with Autoimmune Urticaria and I’m now on higher dose Cyclosporine. I’ve started to feel those dark shadows creeping in again. The pain is returning, so is the tiredness, reliance on drugs for pain, and I worry about stepping so far back.

My symptoms conditions began…

As a kid. I think I’ve always had an autoimmune disease. I first started getting fevers when I was 2 weeks old. I was just always sick. Always tired. I caught mono twice as a teen. I had chicken pox so severe as a kid I had them down my throat. I know I was severely depressed at 12. I had sleeping issues as a teen. I had coping methods that were not safe or would be suggested. I had a devastating eating disorder.

The night I got so sick back in 2007 was a normal night. I felt slightly off and started feeling worse and worse. I asked to go to the Emergency Department. I expected to have an infection but I didn’t expect to find myself fighting for my life. It turns out I had suspected sepsis. The bag of antibiotics was important, but so was understanding the importance of orange banding of patient allergies.

Fast Forward to the present and the first few days of realising I was getting sick again were terrifying. I knew something was wrong, but I never expected it to be something so full on. The first symptom I started experiencing was itching when sweating. Whenever and wherever the sweat would touch, I would feel like a jellyfish sting and hideous itching. I put it down to being ‘dirty’. The second major symptom that developed was a reaction to showering. Wherever the water hit, another jellyfish-like sting would develop, with burning and itching. But following the itching and burning came nausea, a feeling of being overwhelmed in the head and vomiting.

I started taking antihistamines, antihistamines and h-blockers, more antihistamines and finally saw a specialist who told me that due to my previous history of trialling drugs, I was to start Cyclosporine. At first, I was really optimistic because I had 2 weeks of showering with very little symptoms. But then, as soon as it had arrived, the optimism left. All the symptoms were back.

My diagnosis process has been…

Confusing. When I was first sick in 2007, no one knew what was wrong with me. I saw specialists and doctors all the time. People had opinions from Lupus to Still’s Disease to MS to ‘just experiencing a shock’. To get better care, we sold our home and moved. I saw another specialist who told me I had Lupus and “was just being a woman about it”. I was put on every drug you could find. Nothing helped. Nothing improved.

I saw just about every rheumatologist in the capital city. No one had answers for me. In the end, I just stopped going. It wasn’t worth the money. When I started getting sick again, and the blood tests were all fine, it started feeling like deja vu all over again.

However, this time, the specialist knew that this was Autoimmune Urticaria and that I had some dermagraphica which made him feel more confident. It felt unusual that I actually had symptoms someone was familiar with. Though, he did feel there was more autoimmune going on and asked if I wanted to begin looking for that and I told him I didn’t. I just couldn’t face doing it all again.

The hardest part of living with my disability/illness is…

Not knowing if I’m ever going to live normally as other people do. Will I be able to work? Will I finish my studies? Will I ever be independent? It scares the hell out of me. What if the medicines just get worse? I can’t nap through life. These questions just go around and around my mind sometimes. Fears for my future feel almost disabling at times.

A typical day for me involves…

Waking at 6:30. If it’s my week with my daughter then I get up with her and help her get ready for school. Once she’s left for the bus, I head back to bed. If I’m not with her, I go back to sleep. I try to wake up at 6:30 regardless so as to keep a regular rhythm. Sleep is so crucial for the maintenance and care of the Bipolar person. When I wake up I have a cup of tea and run errands or study, depending on the day. It’s really important for me to keep my grades up, so studying is important.

I’ve gotten it into my head that I need to do some sort of exercise, even though I’m not supposed to change my body temperature and/or sweat. I have some hand weights and I’m looking into belly dancing on youtube. I want to stay active for my brain and I want to stay mobile. But gosh, I know I’ve lost a lot of dexterity and put on weight since I stopped going to the gym. Swimming is out, maybe yoga? Am I that cliche? Just do some yoga?

I try to eat normally but I’ve got some problems with eating and I take Seroquel at night, so that makes up for any lost calories I haven’t eaten during the day. Right now Married at First Sight Australia is on, so I’m pretty addicted to that. Otherwise, I just try to rest and study. Glamorous, right?

One thing I cannot live without is…

Hot tea. I’m thoroughly addicted to caffeine and classic Bell Tea with milk gets me through my day. I probably go through 6 to 8 tea bags a day. It’s probably the reason I actually can move. Also, probably why I don’t sleep much.

Being ill taught me…

To take nothing for granted and to be amazingly grateful for the gifts that I have. Being able to walk is tremendous. I spent 9 months on the couch. Slowly I learned to crawl, then scoot and then walk again. Amazing. Getting the energy to work in cat rescue and change litter pans and chase after cats made me forever grateful for the second chance I was given. Now I’m studying to become independent. I’ve got my brain back. I will never not be angry and horrendously filled with rage at what happened to me, but I will also never not be amazed and filled with gratitude that I am where I am today. I’m a survivor.

The advice I’d given someone newly diagnosed…

Is that life goes on. It’s different but it goes on. It’s like when the brand of your favourite chip alters things and it’s never the same but you just go on buying it all the same. You can’t pretend nothing has changed, but at the same time, you still enjoy it enough to keep buying it. Some days are going to be horrific. And you’ll cry. You’re entitled to cry. And get mad. And kick at things. But some days will be not so bad too. And hopefully, you’ll get more of those not so bad days soon enough. That’s all you can ask for. And hugs. Ask for hugs. No one will think less of you for doing so.

My support system is…

Really small. I have a really truly, true-blood ride or die best friend on the net but-not-imaginary friend who gets me and loves me and would do anything for me named Alice. She’s also on the Page. I hope one day to be able to explain to her how much she means to me. And to thank her for lifting me up on those really shitty days.

I have my ex who does a lot of practical things for me. I have my daughter who shouldn’t have to grow up so quickly. And myself. I lean on my GP, Simon, a lot. And that’s it. I do a lot of the emotional stuff myself. I’ve become a lot quieter and controlled. Well, the Abilify has made me that way. I could do with a therapist. And a boyfriend. But we’ll see.

If I had one symptom-free day…

Gosh, I’d just sleep. Nothing would hurt. I’d shower too. Wash my hair and not throw up. Go lay in the sun. And sweat. Imagine!

One positive of having a chronic illness is…

That it gives me an amazing sense of humour and fantastic charm. I can joke around with just about anyone and I relate to a large number of people going through many things. It’s given me a sense of empathy that’s lead me to psychology and wanting to care for others. I’ve always been sort of activist-y anyways, but being sick has really pushed that envelope in fighting for others to get the same rights and access, which has been super useful having a daughter with extra needs.

Thanks so much for having me. You can find me and Muffin at the links below. And me and my kitties on my personals.

My Social Media links:
Facebook: https://www.facebook.com/ChronicIllnessCat
The Cat Tree: https://www.facebook.com/groups/thecattree/
Twitter: https://twitter.com/chronillcat
Instagram: https://www.instagram.com/chronicillnesscat/
Personal Instagram: https://www.instagram.com/smilingtabby/
Personal Twitter: https://twitter.com/kittypajama

Interview April – Jill Goodpasture

It’s time for our next guest, the delightful Jill Goodpasture!

JillGoodpasture

Introduce yourself and tell us a bit about you…

My name is Jill Goodpasture aka Fibroscoop. I have been writing my blog The Scoop on Fibromyalgia and Chronic Illnesses for a year now. I am a divorced mom of 2 teenage boys, 15 and 19. My oldest just left home so things have just changed around the house recently. I also have 3 furbabies and Sophie my support dog is frequently featured on the blog. She is just too stinking cute not to get on there occasionally.

Chronic illness(es)/disabilities I have…

I have Fibromyalgia, Early Degenerative Arthritis in my lower back and hips, Plantar Fasciitis, Narcolepsy, Sleep Apnea, Depression, and Anxiety.

My symptoms/condition began/My diagnosis process was…

In the spring of 2016, I started to have trouble with plantar fasciitis for a second time. I went back to the podiatrist who treated it the first time with cortisone shots. This time the shots didn’t work though. In fact, I had a inflammatory reaction to the shots and can no longer take steroids. I started seeing an Orthopedic Foot Doctor who put me in a boot for 6 months. During that time my back and hip started hurting. When the boot went away, the pain in my back and hip just got worse. When it persisted. I went to the orthopedic for my back and they said I had arthritis in my back and hips.  This was Oct 2016. In about August of that fall I had begun having body aches and nerve pain in my legs. This progressed to numbness and weakness.

The Doctors did nerve tests and MRI’s and finally said there was nothing wrong and sent me to PT. Well it so happens that I had the best PT in the world. She told me that it really sounded like I had something Autoimmune going on with my body. She knew my GP and told me to go talk to him. I did and he said he thought I had Fibromyalgia and maybe MS or RA. He did a thousand blood tests and when everything came back negative he sent me to a Rheumatologist and recommended that my Neurologist do a brain MRI. The Rheumatologist diagnosed early degenerative arthritis in my lower back and hips and fibromyalgia. She ran a bunch of tests that were negative and said we would keep our eyes on and keep checking for muscle conditions based on symptoms. My Neurologist did a brain MRI and there was no sign of MS but we recheck every 6 months.

I have struggled with depression and anxiety since middle school. I have seen a therapist and been on medication for about 20 years now. I like to think I have it pretty much “under control” but anyone with depression knows that is a myth. My therapist and I have a close working relationship and do phone visits weekly, and anytime I feel overwhelmed or that the pain is too much to handle I text her and we schedule extra visits as needed.

The hardest part of living with my illness/disabilities is…

This is a tough one. I would have to say it is a toss up between seeing how it has affected my kids to the loss of the future I had all planned dreamed of for so long.

A typical day for me involves…

I generally wake up early, between 5 and 7. My son gets himself up for school so on the off chance I am able to sleep in, I can do so. When I first wake I lay in the bed and do a few stretches so that when I move to get up it won’t hurt so bad. Then I take my cpap off and put the hoses in the drawer and get up. I stand there and do a few more stretches. I make my bed up and set up a bunch of pillows to recline against and turn on my heating pads to warm up. I let the dogs out. Then I use the restroom and put my medicine bin on the bed so I won’t forget it. I make breakfast, coffee, and a big cup of Diet Dr. Pepper (my lifeblood). When everything is ready I go back to the bedroom and let the dogs in. I filled their bowls while I was in the kitchen.

I make myself comfy on the bed, turn on the morning show and eat my breakfast. Then I take my meds and supplements and do my journaling for the day. I might spend a few hours journaling if I don’t have anywhere to go. If I am going somewhere then as soon as the stiffness leaves my body I will get in the shower so I can sit on the bed for a while after to recover before the appointment. I always schedule appointments with this in mind. After the appointment or a few hours of journaling, around noon or one I will eat lunch if hungry and take a nap. This could be anywhere from one to four hours. When the kiddo gets home from soccer, thankfully transported by friends, we reheat leftovers, eat frozen dinners or he cooks usually. Then he usually does homework and talks to friends and showers til bed. I text with friends and sometimes journal or watch tv or something.

The one thing I cannot live without is…

My phone, it is my connection to the world outside my bedroom. My heating pads for pain control. I can’t decide between them.

Being ill/disabled has taught me…

Well, I think that my illness is trying to teach me patience and the ability to sit and relax, but I have not quite learned the lessons yet. I hate being in the bed all day doing nothing. I get impatient in SO many ways. I am a work in progress.

What advice would I give someone recently diagnosed…

RESEARCH and FIGHT. Research your disease and not just in the medical journals. Go to the blogs and the internet and read what people who have your condition have. Talk to people. You would be shocked once you start telling people how many people you know will have the same condition. Once you are armed with information then you fight. You fight with the doctors and the insurance companies and make sure you get the diagnoses, treatments, and medicines you need to get better.

My support system is…

My mother, my two kids, my friend Lori, and my ex-husband all provide supports in different ways. My best friend Traci has been there more times than I can count. My biggest support is my therapist who has went above and beyond making herself available by phone 24/7 to help when I am in pain or depressed or having major anxiety or whatever I need.

If I had one day symptom/disability-free I would…

Be on the go from sun up to sun down. I would do something fun with my boys. I would go kayaking with my best friend. Go out to eat anywhere I want. Go see a movie. Just go, go, go. Like before I got sick.

One positive of having a chronic illness/disability is…

Hmmm…. This question is a tough one for me. I honestly cannot come up with a positive at this point. Maybe I will one day but right now in this journey I cannot.

My social media links are:

Blog:

https://scooponfibro.wordpress.com/

Facebook:

https://www.facebook.com/fibroscoop1/

Instagram:

https://www.instagram.com/fibroscoop/

Twitter:

https://twitter.com/Fibroscoop

Interview April – Amber Blackburn

Let’s welcome our next guest, the adorable Amber Blackburn!

AmberBlackburn

Introduce yourself and tell us a bit about you…

Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States.  I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!

Chronic illness(es)/disabilities I have…

Way too many for someone my age!  I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.

My symptoms/condition began and My diagnosis process was

I am going to combine these two questions as it makes my response easier.

I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.

So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS.
The hardest part of living with my illness/disabilities is…

If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.

A typical day for me involves…

A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.

I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.

The one thing I cannot live without is…

I hate to admit this, my phone.  I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.

Being chronically ill/disabled has taught me…

Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.

What advice would I give someone recently diagnosed…

The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group!  No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.

My support system is…

My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky.
If I had one day symptom/disability-free I would…

Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.

One positive of having a chronic illness/disability is…

One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.

My social media links are:

Interview April – Sharon Sayler

It’s time to meet our next guest, the wonderful Sharon Sayler. I’ve had the pleasure of being a guest on Sharon’s show and she’s delightful. Let’s hear more:

Sharon Sayler Headshot 2017 Hi-Res

Introduce yourself and tell us a bit about you…

First, thank you, Pamela, for creating an excellent platform for which we have this opportunity to share. I enjoy our mutual understanding that through thoughtful sharing of experiences others in our community know that they are not alone. That feeling of ‘am I the only one?’ can be isolating. Building community and awareness of ways to thrive and optimize our health journey are critical.

I’m Sharon Sayler, MBA, PCC and the founder of Competitive Edge Communications. I’m affectionately called the ‘Difficult People Whisperer’ by my clients. As a speaker and trainer, I teach professionals how to enhance their verbal and nonverbal communication skills to achieve their goals. According to GlobalGurus.org, I’m one of the top five experts in body language in the world.

I am also an international best-selling author of several books. A perennial favorite is ‘What Your Body Says and How to Master the Message: Inspire, Influence, Build Trust and Create Lasting Business Relationships’ (Wiley.) I  am also proud to share. I’ve also authored a best-selling children’s book ‘Pinky Chenille and the Rainbow Hunters’ with a second book in the Pinky Chenille series out soon.

Several years ago, life and work took an unexpected turn to become what my friends now call a “compelling-passion.” With my COURAGE communications techniques combined with my own experience dealing with a rare medical condition, I have been teaching others to become courageous self-advocates. Self-advocacy communication techniques can turn life transitions into transformations.

One of the ways I share the messages of ‘thriving regardless of your diagnosis’ and medical self-empowerment is through The Autoimmune Hour, now #1 show on OMTimes Radio along with the @UnderstandingAutoimmune YouTube channel, and the show’s website UnderstandingAutoimmune.com.

Chronic illness(es)/disabilities I have…

I dislike the word ‘have’ as I prefer my unconscious mind not to take ownership, yet for ease of understanding, the label my experience has is autoimmune more specifically Dermatomyositis. 

Dermatomyositis is a rare inflammatory (autoimmune) disease defined by muscle weakness and a distinctive skin rash. The painful, peeling rash had covered 60% of my body by the time I recovered from the initial ‘flare.’ 

My symptoms/condition began…

Suddenly and not so suddenly.  One morning I woke up after a late night cross-country flight and my legs felt incredibly weak. I had to use my arms to move my legs to stand. Although frightened, this seemed to work itself out over the next few hours. I chalked it up as ‘weird’ and kept working. Feeling tired and achy for the next two weeks, I suddenly broke out in hives that soon covered a large percentage of my body.

I realize now I’d had a variety of symptoms long before this episode that fit a wide range of conditions, and it wasn’t until the distinctive skin rash that a definitive diagnosis was made.

My diagnosis process was…

Bizarre to say the least. I had been seeing a specialist for about a year with her proclaiming a variety of diagnoses that didn’t seem to fit….

The day I walked in with the ‘now peeling distinctive skin rash’ she immediately excused herself and came back 10-minutes later with another doctor who without introduction, pulled out a magnifying glass and looked at various parts of the rash, looked at the first doctor, nodded ‘yes,’ and left the room. The first doctor that I had known for a few years dropped her head and slowly apologized to me for having dermatomyositis.

She could have said supercalifragilisticexpialidocious as the word ‘dermatomyositis’ meant nothing to me. The sad-news-body-language told me, ‘it’s not good.’ After that, the words blended together as I struggled internally to understand what she was saying – it was like my ears had stopped hearing and my brain had ‘frozen.’

We parted ways with an understanding I had to see a rheumatologist. Upon reaching the elevator, I immediately ‘googled’ the word, at which time the shock and grief hit hard.

The hardest part of living with my illness/disabilities is…

Losing perspective. Now, that I’ve been through multiple phases of recovery, I realize the worst part is losing perspective on ‘when is an itch, just an itch.’  The slightest change, the smallest strange pain, anything odd or different begins the mental gymnastics of Do I need to worry about this? What does this mean? Is this so important that I must seek medical attention immediately, can it wait until tomorrow, or what if I just let it run-its-course will I be okay?  And of course, dealing with all the new found food and chemical sensitivities as the body defenses seem to be stuck in hyperdrive make social occasions awkward.

A typical day for me involves…

Everything I used to do that I still want to do. The changes I see are I’m more consistent in choosing to set boundaries, say ‘no’ when I want to, remove myself from others drama and be conscious of my decisions and actions around what I should be doing for overall good health such as quality food, stress reduction, sleep, and exercise.

The one thing I cannot live without is…

Spending time creating joy, especially with my beautiful family and friends. Life is too short — spend it giving and receiving love. (And the irresistible passion I have for doing The Autoimmune Hour podcast and video show.)

Being ill/disabled has taught me…

I don’t consider myself ill or disabled, yet I’ve learned to be more patient and understanding. It’s crystal clear now, the old saying ‘that one can never really know what someone else is going through unless you’ve been there too.” My mantra these days is ‘Come from love. Always.’

What advice would I give someone recently diagnosed…

First, if you can, take time to absorb and sit with the ‘bad news.’ If it’s not immediately life-threatening, don’t make any major life decisions right away.

I remember I was told by a ‘top-notch’ doctor to have a surgery that in my mind would have made my life much worse in the long run, and with no real assurance that it would solve the immediate problem… I felt like they were treating me as if they were working on a car like ‘let’s remove the spark plugs and see if that works better….” Upon finding out that it wasn’t immediately necessary, I thanked them and sought a second opinion. 

That second opinion changed my worldview; the second doctor said, “That’s a surgeon’s answer to a problem they cannot solve.” Wise words that I use everywhere now as in each person/expert/etc. has a specific point of view and the more narrow their expertise, the more narrow their recommendations will probably be.

Always run options through the filter of “What are other ways I can view and solve ‘this?’ Remember, it’s okay to ‘fire’ someone. If someone is upset that I seek a second opinion. I say “Thank you for your time and no thank you.” I like to joke that there are as many varied opinions as there are experts.

Second, be careful how you talk about what you are going through. Our words create our reality. Words such as ‘poor me’ and ‘why me? can create our identity. Consider the word ‘have’ and how it denotes ‘ownership’ Do I want to own my diagnosis? No. I prefer to look at the word ‘have’ from the viewpoint that I can ‘have’ cockroaches, but that doesn’t mean I own them and that I can and will eradicate them. When said enough times your words become truth in your mind, and in the minds others too.

I prefer ‘I am having an autoimmune experience or journey.’ A diagnosis is just a label to chart a possible course based on symptoms and the prognosis is based on statistics — work hard to be on the positive side of the stats. Challenge yours and others’ conclusions on what your future will be. On The Autoimmune Hour, we have numerous stories of people thriving regardless of their diagnosis including Pamela who recently shared her Thriver story: www.UnderstandingAutoimmune.com/Jessen/.

My support system is…

My amazing family and friends as well as a team of medical professionals that are in alignment with, or at least, honor my view of ‘my body, my decision.’  And the UnderstandingAutoimmune’s Courage Club Community that is growing every day through the podcast and website.

If I had one-day symptom/disability-free, I would…

Hmmm, I don’t know. I’m finding ways to live fully and thrive regardless of my diagnosis. Maybe eat a whole loaf of fresh baked crusty bread slathered in homemade butter and raw honey at a quaint Parisian cafe!

One positive of having a chronic illness/disability is… 

A deeper appreciation of the quality and value of all life.

My social media links are:

The show can be heard on a major podcast outlets such as OMTimes Radio, Spreaker, iTunes, YouTube and iHeart Radio.

https://www.facebook.com/UnderstandingAutoimmune/

https://www.facebook.com/AutoimmuneHour/

www.UnderstandingAutoimmune.com/OMTimes

www.UnderstandingAutoimmune.com/YouTube

www.UnderstandingAutoimmune.com/Spreaker

Instagram: autoimmunehour  and understandingautoimmune

Twitter: @autoimmunehour

Interview April – Ellie Trinowski

Let’s meet our next Guest (with the gorgeous smile), Ellie Trinowski, and find out more about her:

EllieTrinowski

Introduce yourself and tell us a bit about you…

My name is Ellie Trinowski, and I live in Cleveland Georgia. I’m a wife, mother, and Grammie.

Before I stopped working, I was an event planner and coordinator for weddings in the Northeast Georgia Mountains. I worked with wineries and catering companies to create memorable events in picturesque settings. I loved my work. Now, I am a full-time grandmother of a talented little gymnast named Violet. I love this gig, too!

Chronic illness(es)/disabilities I have…

I have psoriasis(PsO), psoriatic arthritis(PsA), fibromyalgia, epidermolysis bullosa acquisita(EBA), and bullous pemphigoid(BP).

Beyond these autoimmune diseases, I have also survived multiple bilateral pulmonary embolism, and I live with a supraventricular tachycardia.

My symptoms/condition began…

I was 17 years old when the psoriasis begin. It wasn’t until I was 44 years old that I was diagnosed with psoriatic arthritis. Within the next year, symptoms of fibromyalgia began.

In the summer of 2017, I began realizing symptoms of a rare skin disease called epidermolysis bullosa acquisita. By the end of the year, I was diagnosed with bullous pemphigoid.

My diagnosis process was…

I have been very fortunate in the duration that it took for my disease processes to be diagnosed by medical professionals. The largest obstacle was the pain and limited mobility that came with PsA initially. It did take almost two years of suffering before I found the right doctor to diagnose me with PsA. Dr. Jatin Patel also diagnosed me with Fibromyalgia and recognized the symptoms of my rare skin disease. He was expeditious in getting me to a dermatologist, Dr. Carmen Julian, for evaluation. After several biopsies and blood work, I was diagnosed with EBA. Finally, it was determined that I also had BP at Emory in Atlanta by Dr. Ronald Feldman, who is the professor of dermatology at the clinic for blistering diseases.

The hardest part of living with my illness/disabilities is…

I do not appear sick. It is incredibly frustrating to have people judge me when I use a mobility cart in a grocery store and have people ask me why. I’m 50 years old. Once I had an elderly woman walk up to me, while I was on a mobility cart, and she asked me to get off because she needed it more. Of course, there was no way for her to know that I had a flare of all of my diseases at the same time. I was in a lot of pain, I couldn’t walk well and my skin disease was causing ridiculous itching. I was feeling frustrated and embarrassed because she did this in the middle of the pharmacy area of the store. I relinquished and gave up the cart to her.

A typical day for me…

Involves a lot of driving!

Now that I am a full-time Grammy, I drive my granddaughter to school, and I pick her up every day. I take her to gymnastics practice, and we might go to the park if there is no gym. She helps me pick up groceries and we head home.

If I am not flaring, I plan dinner most days, and if I’m doing really well dinner actually gets made! I try to do one thing that contributes to house cleaning every day, like vacuuming the living room or cleaning a bathroom. I find that things don’t get too out of hand that way. Violet always helps me out with chores, as well.

By early evening, I am typically on the couch because I’m toast! I will make it into my room, take my medicine and fall into my bed by 8pm, where I watch Netflix.

The one thing I cannot live without is…

The support of my family! I am blessed beyond measure! My husband works full-time and still does the laundry for me and anything else that I can’t handle that I would have done before my disabilities. My mother and father live right next door, and they are incredible when it comes to anticipating my needs. Dad gave me a cane when walking became difficult. Besides checking on me often, my dad brought a walker over before I admitted I needed it. My mother randomly shows up with leftovers or muffins, and a smile to cheer me up. My little Violet fetches things for me, and helps me in the kitchen, or when I need to tidy up the house.

Being ill/disabled has taught me…

Although I have never been one to judge, being disabled has taught me never to judge a book by its cover. You never know what somebody is going through. It has also taught me that life is short and that you must make the most of every day. After being admitted to the hospital on October 5, 2017, and being told I was lucky to be alive after blood clots had been found in both of my lungs, I tend to look at every day with different eyes. I’m incredibly grateful for my life.

It is not always easy on painful days, but it is imperative when you consider it might be your last.

What advice would I give someone recently diagnosed…

I would tell someone who was recently diagnosed with an illness or disability that they must stand up for themselves. It is so important to speak your truth and ask plenty of questions. Take notes and research responsibly. Instead of researching on Google, type in Google Scholar and utilize that platform for reliable research. Ask for a second opinion if necessary and get to know others who suffer from chronic illness. This gives you a sense that you are not alone and it is also a great resource to gather ideas to help yourself.

My support system is…

I have always believed that it takes a village to accomplish anything. As I mentioned my family is my number one support. I also value the social media community of chronically ill patients. I am grateful to the people who spend time sharing their experiences and knowledge with others to effect change in policies, as well as, suggestions for the lifestyle alterations we must make in our lives. Others who have lived our pain and challenges sharing their experience is a priceless resource I am grateful for!

If I had one day symptom/disability-free I would…

Go for a hike in the mountains with my granddaughter.  I used to push Violet in her stroller all over this beautiful place we live in. When she became a toddler, I would take her with me on hikes to wear her out and get a good nap out of her! I had no idea back then that this simple ritual would be taken away from me before I was 50 years old.

One positive of having a chronic illness/disability is…

The ability to effect change. Because of outlets like the National Psoriasis Foundation and the Arthritis Foundation, I can connect with others and use my voice to effect change in my state and even in my country. I am currently advocating for step therapy reform in the state of Georgia. I was able to bring my voice to this legislation by traveling to the Capitol on Advocacy Day and share my story with others. I love that sense of accomplishment and progress.

My social media links are:

https://www.facebook.com/grammiesdoublewhammy/

www.instagram/grammiesdoublewhammy

www.twitter.com/ellietrinowski

www.grammiesdoublewhammy.com

Interview April – Christalle Bodiford

Welcome to Interview April and my first Guest, Christalle Bodiford. Let’s find out all about this lovely young woman:

Christalle-Michael-Schaffer-Photography-8

Introduce yourself and tell us a bit about you… 

My name is Christalle Bodiford, and I’m an adventure-seeking artist and advocate. When I’m not writing, I love being in nature with my husband and pup. I worked in the fashion industry for 12 years but am now building a more balanced lifestyle and making my health a priority. I ran a nonprofit called Life Elektrik for adults with epilepsy that closed at the beginning of March, to allow more freedom in working with others and helping more people.  I felt held back by the organization.  I’m now working on a few new epilepsy advocacy projects, including books, workshops and awareness campaigns, with the first project launching this month!

Chronic illness(es)/disabilities I have…
I have Juvenile Myoclonic Epilepsy with generalized seizures, along with my other life-long friends anxiety and depression. That means my seizures started when I was a juvenile and they are in no specific area of my brain.

My symptoms/condition began…
My first documented seizure was at the age of 13, but I was having seizures prior to that.  I’m not sure of the exact age they started.  I don’t have too many memories prior to 13, aside from the feelings of the seizure auras.

My diagnosis process was…
I received a misdiagnosis at age thirteen and went twelve years of my life with an incorrect disagnosis.  At age thirteen I was told I had a seizure due to hypoglycemia and to keep a piece of candy on me at all times. At the age of twenty-five, I was properly dianosed with epilepsy after having a tonic-clonic seizure, followed by a concussion, the final week of my senior year in college.  My husband (boyfriend at the time) made an appointment and took me to a neurologist for an EEG, which showed abnormal brain waves and seizure activity.

The hardest part of living with my illness/disabilities is…
Being mentally and intellectually capable of so much more than my body allows.  I have so many goals, and my body often can’t keep up with the pace of my passion and drive. I feel held back from reaching my true potential.

A typical day for me involves…
I’m a freelance creative, so a typical day for me is waking up when my body feels right.  I work from home, so I am able to take breaks throughout the day as needed when I’m not feeling 100%.  I’ve recently made my health a priority, which has not been the case in the past. In past experiences, my work came first. I now understand the importance of putting self-care first. I also hold a few volunteer positions that I handle a few times a month.

The one thing I cannot live without is…
Really?  Just one thing!? I guess I have to choose my cell phone, because it’s a necessity in calling for help if I have a seizure. I can also use it for some work projects, so I’m sticking with my answer!

Being ill/disabled has taught me…
Perspective is everything! If you think your life is terrible, it will be. I choose to focus on the things going well in my life, and it lightens the load of the heavier issues.  A positive or optimistic mindset has also helped me to feel better about my diagnosis. This disorder is constantly presenting new lessons and challenges, but I know I can tackle anything if I set my mind to do so.

What advice would I give someone recently diagnosed…
Do your own research, because there is so much misinformation out there.  Find what works best for you in regards to treatment, because we are all different – even if we have the same diagnosis. Most importantly, get back up.  Every. Single. Time.

My support system is…
Support is everything, even when you think you don’t need it.  If you can’t find a support group that is right for you, create your own.  Focus on solutions vs. problems.  I have a small but very supportive circle, and my husband is at the core.  He is my caregiver, best friend, and someone I truly admire.

If I had one day symptom/disability-free I would…
Wow! I really have to think about this one… There are so many things I’d love to do, but I think my anxiety can be more debilitating at times than my seizures, in regards to trying new things.  I think I’d like to go on some type of adventure with my husband that involves heights: sky diving, zip lining, parasailing, or paragliding.

One positive of having a chronic illness/disability is…
Meeting so many incredible people within the epilepsy community has been the highlight of having epilepsy. It’s amazing how connected you can feel to people just by having the same diagnosis. I’ve made friends all over the world.

My social media links are:

Instagram: @christallebodiford

Facebook: @creativeepilepsyadvocate

Twitter: @christalleart

Website: christallebodiford.com

Fibromyalgia and Pet Therapy

Fibromyalgia and Pet Therapy

pet-therapy

Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!

Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.

What Is Pet Therapy

Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.

The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.

With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.


What Are The Benefits Of Pet Therapy?

Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.

How Can Pet Therapy Ease Fibromyalgia Pain?

While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.

And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.

And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.

So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.

How Can You Start?

Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.

Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.

So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.

Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.

Outlook

The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.

Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan.

Gastroparesis Is A Slow Go

One of the many conditions I live with is called Gastroparesis. Gastroparesis means paralysis of the muscles of the stomach. Gastroparesis results in delayed emptying of food from the stomach into the small intestine. It can be minor or quite severe; in my case, I have a moderate degree of paralysis, and the food sits for 2-3 days before being processed further in the digestive system.

feat-gastroparesis

I wasn’t aware there was a problem at first as the usual signs of Gastroparesis are nausea and vomiting. I didn’t suffer from either of those, but I did experience a lot of bloating. It felt like whatever I ate just sat there in my belly forever.

Some of the causes for Gastroparesis include:

There are many symptoms of gastroparesis, including:

  • Heartburn or GERD
  • Nausea
  • Vomiting undigested food
  • Feeling full quickly when eating
  • Abdominal bloating
  • Poor appetite and weight loss
  • Poor blood sugar control

Some of the complications of gastroparesis include:

  • Food that stays in the stomach too long can ferment, which can lead to the growth of bacteria.
  • Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine.
  • People who have both diabetes and gastroparesis may have more difficulty because blood sugar levels rise when the food finally leaves the stomach and enters the small intestine, making blood sugar control more of a challenge.

HOW DO THEY TEST FOR GASTROPARESIS

To diagnose gastroparesis, your doctor will review your symptoms and medical history. He or she will also give you a physical exam and may order certain blood tests, including blood sugar levels. Other tests used to diagnose and evaluate gastroparesis may include:

  • Barium X-ray: You drink a liquid (barium), which coats the esophagus, stomach, and small intestine and shows up on X-ray. This test is also known as an upper GI (gastrointestinal) series or a barium swallow.
  • Radioisotope gastric-emptying scan (gastric scintigraphy): You eat food that contains a very small amount of radioisotope (a radioactive substance), then lie under a scanning machine; if the scan shows that more than 10% of food is still in your stomach 4 hours after eating, you are diagnosed with gastroparesis.
  • Gastric manometry: A thin tube that is passed through your mouth and into the stomach measures the stomach’s electrical and muscular activity to determine the rate of digestion.
  • Electrogastrography: This test measures electrical activity in the stomach using electrodes placed on the skin.
  • The smart pill: This is a small electronic device that is swallowed. It sends back information about how fast it is travelling as it moves through the digestive system.
  • Ultrasound: This is an imaging test that uses sound waves to create pictures of body organs. Your doctor may use ultrasound to eliminate other diseases.
  • Upper endoscopy: This procedure involves passing a thin tube (endoscope) down the esophagus to examine the lining of the stomach.

I underwent the Radioisotope gastric-emptying scan. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.

DAY OF TEST

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of the sandwich, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my Doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.

If you’re experiencing symptoms of Gastroparesis, please make an appointment to see your family doctor as soon as possible. There are treatments available and you won’t have to put up with the suffering. Thanks for reading and remember…

There Is Always Hope

I Need You To Need Me

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I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:

I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.

How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple. And your sexual orientation makes no difference either.
Intimacy is the fuel that keeps a good relationship running. It encompasses so much more than just sex. Think about the different ways it’s defined in the Thesaurus:

  1. the state of being intimate.
  2. a close, familiar and unusually affectionate or loving personal relationship with another person or group.
  3. an act or expression serving as a token of familiarity, affection, or the like, to allow the intimacy of using first names.
  4. an amorously familiar act; liberty.
  5. sexual intercourse.

Intimacy is also about being close emotionally. When was the last time you went on a date? When was the last time you actually sat and talked to each other ABOUT each other? Not about work or the kids, but about the two of you and how you’re doing. What’s new, what’s real, what you love about each other? When was the last time you looked into each other’s eyes and said “I love you” and really meant it?
If you haven’t dated for a while, maybe it’s time you did. Here are 25 easy date ideas that might get you started in the right direction:

  1. Go furniture shopping at a thrift store
  2. Volunteer in your community
  3. Go Whale Watching together if you live in an ocean town
  4. Or go to the Zoo or Aquarium
  5. Go to the Library
  6. Play hide and seek in your local park
  7. Go to a Psychic together
  8. Go on a Scavenger Hunt
  9. Try Rollerskating at your local rink
  10. Host a dinner party
  11. Go to an Improv show
  12. Go Camping
  13. Host a Board Game party
  14. Have friends over and play board games
  15. Look at Adoptable Pets online. You know, for “someday”
  16. Do a classic Dinner and a Movie date
  17. Go Berry Picking or Apple Picking for whatever is in season
  18. Go to the beach if you have one
  19. Try out a local Bed & Breakfast
  20. How about Trivia Night at a local bar?
  21. Be a Tourist in your own City
  22. Check out your Local Theatre scene
  23. Work out the clues in an Escape Room
  24. Try out a Brewery Tour
  25. Go to Karaoke together and sing the cheesiest songs

So once you’ve reconnected and you’re ready for sex again, the Mayo Clinic offers these suggestions when you have a partner who lives with Chronic Pain*

Sexual intercourse is just one way to satisfy your need for human closeness. Intimacy can be expressed in many different ways.

  • Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
  • Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
  • Oral sex. It can be an alternative or supplement to traditional intercourse.
  • Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
  • Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
*https://www.mayoclinic.org/chronic-pain/art-20044369

The key factors to intimacy are trust, respect and honesty. You need to be able to trust your partner won’t push you into something you’re not physically able to do and will respect your limits. There needs to be honesty between the two of you and with yourselves as well. Don’t use your Chronic Pain as an excuse to get out of sex if it really isn’t a problem…that’s not fair to your partner. If you’re avoiding sex for another reason, then be honest. If you’re mad at your partner for something they’ve done, then say so.

Tell them what and why and talk it out.

Don’t use your health to avoid other issues, because you’re simply breaking the trust and respect factors when you do that. You already have enough physical pain in your life – don’t add mental pain as well. Intimacy is too valuable a commodity to just throw away. Keep working on it and before you know it, you’ll be building and rebuilding the relationship of your dreams. And that’s no Cheap Trick!

There is always hope

Saturday Inspiration: Finding Joy In The Little Things

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“Happiness is like a butterfly; the more you chase it, the more it will elude you. But if you turn you attention to other things, it will come and sit softly on your shoulder.” Henry David Thoreau

On this Inspiration Saturday, I thought I’d share a few ideas that might bring a little joy into your life. Try one, try a few or try them all…the choice is yours!

1.    Go for a walk.
2.    Look through old album or photo boxes.
3.    Enjoy your favorite coffee drink.
4.    Read a chapter (or more!) in your book.
5.    Stop by a pet store and love on a kitten (or other animal).
6.    Take your dog (of friends dog) for a walk.
7.    Enjoy your favorite pastry.
8.    Hug someone (preferably someone you know).
9.    Play your favorite song and sing-a-long.
10.  Compliment a stranger.
11.   Pick wildflowers

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12.   Stare at the stars.
13.   Take a bike ride.
14.   Send snail mail (this makes me super duper happy).
15.   Make your favorite meal.
16.   Color!
17.   Sing your favorite song at the top of your lungs.

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18.   Watch your favorite show or movie.
19.   Call a friend or relative.
20.  Make a craft and give to a friend.
21.   Take the scenic route.
22.   Read through an old journal.
23.   Watch re-runs of your favourite show.
24.  Take a selfie a day for a week, month or year.
25.  Laugh.

There is always hope

What Does Science Say About CBD Oil For Migraines

Let’s welcome back John Martinez as my Guest Blogger today. John brought us information about using eyewear to help with migraines, and today, he’s talking about CBD Oil to help ease Migraine pain. Please note that all opinions expressed are those of the author but I do endorse them as well.

CBD Oil for Migraines – Effective, or Merely Hype?

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CBD oil has been gaining some steam in the media ever since its recent December 2018 legalization in the US.

Additionally, in the migraine community, there are loads of anecdotal evidence expressing the effectiveness of CBD and treating migraines. Is it all hype, or are these claims backed by scientific literature?

This article will get into the specifics of what CBD oil is, and whether it’s something migraineurs should investigate as something that could benefit them.

What Is CBD Oil?

CBD (also known as cannabidiol) oil is a naturally derived product from the plant Cannabis Sativa. Cannabis Sativa is categorized as a family of plants that contains two primary species: hemp and marijuana. The Cannabis Sativa plant also contains 120 other substances aside from cannabidiol. Most CBD oil is extracted from the hemp plant and contains no THC, which is the psychoactive chemical in marijuana. THC is the chemical that causes the feeling of being high. CBD oil is an isolated extract from the hemp side of Cannabis Sativa, not the marijuana side of the plant that contains THC.

Simply put, CBD is not marijuana and will not make you high.

Although CBD is derived from the same plant that has the ability to produce marijuana, CBD is non-addictive. A study that was conducted by the World Health Organization has proven, through a double-blind and randomized study that, on the scales of the Addiction Research Centre Inventory, there was no difference in addiction risk between CBD oil and the administered placebo.

Could CBD Oil Help Me with Migraines?

The efficacy of CBD oil to treat migraines varies from person to person. In a 2012 study, CBD was found to reduce inflammation and assist with chronic pain relief. CBD oil has minimal side effects compared to typical over the counter drugs and prescribed medications. Some side effects of CBD include appetite changes, fatigue, and diarrhea, which most of us would categorize as minor. One of the most appealing aspects of CBD oil is that it is not a pharmaceutically-engineered drug, but rather a natural avenue towards pain relief.

Unfortunately, there hasn’t been any studies specifically demonstrating the effects CBD has on people with migraines. There have been quite a few studies on marijuana as a whole and migraines, but not isolated CBD.

For example, there was a 2016 survey conducted by Pharmacotherapy which indicated that “medical marijuana” may reduce the frequency of migraine headaches – from 10.4 down to 4.6 per month. Even though marijuana contains CBD, we can’t attribute the results to CBD.

Overview of CBD Oil and Migraine Pain Relief

While it’s too soon to definitively say that CBD oil might be an effective treatment for people suffering with migraines, progress is being made.

All we know for sure is that there are some properties in CBD that help with inflammation and chronic pain management. And we also know that in medical literature, marijuana (which contains CBD) seems to be giving some people migraine relief.

Since it’s now legal on a federal level (in the US), and it’s a naturally occurring compound, it may be worth a try.

If you want to learn more about CBD, check out this article, CBD Oil for Migraines (2019) – Everything You Need to Know.

Remember, there is always hope

Saturday Inspirational For Fibromyalgia

New Series

I’m starting a new series called the Saturday Inspirational For Fibromyalgia. Each week, I’ll be posting something inspirational on Saturday to help raise our spirits and give us something positive to think about when it comes to Fibromyalgia and other Chronic Illnesses. I’ll generally start with a quote and then some words of wisdom afterward.

The best cruise in Australia and New Zealand tourism destinations

Today is the inagural post, so here the quote I picked to start:

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So often, when we are living in Chronic Pain, we tend to disasterize what we’re going through. Isn’t it nice to know that we don’t have to do that. As this quote reminds us, we don’t have to think the worst of things. Instead, we can see things in a more positive light, like hills instead of mountains or days that aren’t lifetimes.

Perspective

Keeping a clear perspective is a good lesson for all of us. Even on our darkest days, if we’re honest with ourselves, there are still good moments. We may be feeling bleak, but the sun is still shining. We may feel lost and alone, but our pets are still there for us, faithful and loving. It’s easy to see the emptiness from a viewpoint of pain, but we have the power to turn that view into something better. It’s a choice and wouldn’t you rather choose the beauty over the battered?

It’s not easy to stay positive when you live with chronic pain, but it is possible. Surround yourself with the things that bring you joy. Flowers, your favourite tea, a good book, soft music (or rock!)…whatever brings YOU comfort. Doing these small things for yourself is the start of making positive change in your life. Change the mountains to hills and see what other new changes you can make as well.

There Is Always Hope
#SaturdayInspirationalForFibro

 

Fifty Reasons To Keep Going

If you are going through a hard time right now, I want to give you 50 good reasons why you need to be strong and why you need to stick around.

  1. You are a soul worth having on this earth
  2. Long hugs (my favourite)
  3. Cute baby animals
  4. You are so loved
  5. Staying up all night just to sleep in
  6. Making babies smile and laugh
  7. Sharing secrets with your best friends
  8. You will be missed
  9. Sunsets
  10. Late night phone calls
  11. Cuddling
  12. You are needed
  13. Doing stupid stuff with your best friends
  14. Laughing so hard that you cry
  15. Seeing yourself recover
  16. Crunchy leaves
  17. Knowing all the lyrics to a song
  18. Stargazing and cloud watching
  19. You are important
  20. Tomorrow is a new day.
  21. Chocolate exists.
  22. There are people out there who truly love you.
  23. At least a thousand other people at this very moment feel sad, too — you’re not alone.
  24. There’s help out there no matter how big or small your problem is.
  25. There’s music out there that totally captures what you’re feeling, which means you’re not the first or last to feel it.
  26. Everything is temporary.
  27. Unconditional love exists.
  28. Puppies.
  29. Nobody else knows what they’re doing either.
  30. Trying never hurt anyone.
  31. Smiles are contagious.
  32. You have a right to feel what you’re feeling.
  33. Anything can happen with a pen and blank sheet of paper.
  34. You’re not this person.
  35. Animals love you no matter what.
  36. The best lessons come from the worst mistakes.
  37. Netflix has so many shows you need to watch.
  38. All good love stories have a “goodbye” before the happy ending.
  39. Just being alive means you’ve beaten the odds.
  40. There’s a plethora of cliche quotes to make you feel better.
  41. Like “Nothing worth doing is ever easy.”
  42. And “Quality is better than quantity.”
  43. Also, “Everything happens for a reason.”
  44. Whatever you’re going through is making you “you.”
  45. Nothing feels better than a good cry, so don’t feel bad about it.
  46. You will always have control of your choices.
  47. Forgiving does bring healing.
  48. Simba lost everything and still became king of the jungle.
  49. You’re becoming stronger every moment you pick yourself back up.
  50. You’ll be OK.

Please reach out for help if you need it.

Text CONNECT to 741741 in the United States or phone:

1-800-273-8255

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In Canada

Call 911 or use the following link for help in your province:

https://suicideprevention.ca/need-help/

 

There is always hope

What It Memes To Have Chronic Pain

They say a picture is worth a thousand words, so today I present to you what it means to have Chronic Pain, in meme format:

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There is always hope

Communication Skills

Ah, communication. What a tricky thing you are.

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When you’re a person living with Chronic Pain (PwCP), you get asked the same question quite frequently.

How are you?

And my standard response has always been, “I’m fine”. But what a lie that is, when clearly, I’m not fine, or I’d be living a different life. If I was fine, I wouldn’t be on disability, using a cane or a walker everywhere I go. If I was fine, I wouldn’t be in constant pain from my Fibromaygia, or my D.I.S.H. or my osteoarthritis in every joint, or experiencing the issues that go along with my Bipolar Disorder or my Diabetes Type 2 or my Trigeminal Neuralgia.

If I was fine, I wouldn’t have insomnia, and be up 22 out of every 24 hours, even after taking valium to help me relax and sleep. If I was fine…I wouldn’t be blogging about being fine.

So why do I respond that way?

People Don’t Want To Hear The Truth

People don’t want to hear the truth. It makes them uncomfortable to know that someone is hurting when there is nothing they can do about it. It makes them feel weird, to hear about someone else’s pain. They get antsy, thinking they’re in for a long diatribe about medical procedures and doctor visits as if they’re at risk for catching something themselves. They get nervous thinking they’ll hear about your emotional state. And to be honest, a lot of the time, people don’t really care how your feeling. They ask you how you because they’re polite. It’s the right thing to do.

So, I’ve decided to stop telling people that I’m fine. I’ve decided to come up with a new response, and that new response is:

“Part of me is great, and part of me is not so great.”

I’ve decided this gives people an out. If they don’t want to know more, they can simply reply “well, I’m glad part of you is great” and carry on with their own lives. If they genuinely want to know more, they can ask about the parts that aren’t doing well. That way, I know that they’re sincere about how I truly am instead of just making polite conversation.

I hope this doesn’t sound like I’m being sarcastic, because I’m not. I’m genuinely trying to help people be more comfortable around People with Chronic Pain and to find a way to make it easier to ask and answer that question of “how are you”. It’s a tough one because there is no one good answer. The PwCP doesn’t know if you’re sincere and we don’t know how much information you truly want. The last thing we want to do is bore you with the latest in our medical news, and trust me…it’s truly devasting for us when we think you’re interested and then we find out you’re not.

Showing Real Interest

I doubt seriously there’s any malicious intent in your question either, but again, it comes down to being polite and being interested. I would rather give you a polite answer and have you ask for more information if you really want it, but that comes with its own complexities as well. Suppose I say “I’m fine” and you hear “oh, she’s fine, I guess everything must be okay” when what I really mean is “I’m fine, but not really and I wish you would ask me more about my day and how I’m feeling”.  It’s a communication breakdown because I don’t feel I can ask for what I want in case you’re not really interested, and you don’t feel like there’s necessarily anything else worth asking about.

If you ask me if I’m fine though and I tell you “actually, I’m not doing so great”, how would you respond? If you’re simply being polite, now you’re stuck. You either have to listen to what’s wrong or say something trite like “oh, I’m so sorry to hear that” and change the subject. Neither of us leaves the conversation satisfied, so my response, even if it’s the truth, isn’t the best one either.

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Two small words with so much meaning behind them.  That’s why you’ll be hearing a different response from me going forward. I’m going to try my best to stay away from those two words to make it easier on all of us and start answering with my new response:

“I’m doing as well as expected given the number of health issues I’m living with.” That leaves it open to the person to expand on the subject if they wish or to simply say “oh, that’s good” and move on.

I appreciate your thoughts and comments about this subject. And for those of you without chronic pain, I hope you’re doing fine – really!

There is always hope.

Managing My Mental Illness

I have Bipolar Disorder and have talked about it before on my blog. It’s not something I hide but I don’t really discuss it much either so I thought I’d share a bit more about what it looks like for me.

Although currently stable on medication, when I was unmedicated and undiagnosed, I would have the most incredible highs and lows. My manic highs would see me racing around the house, cleaning whatever I could, and cooking dinners every night and baking and crafting and never, ever sleeping…I would be up for days on end without any sleep at all. At my worst, I was awake for 8 days in a row – and I mean without a drop of sleep. I was unbeatable…I would shop online without realizing what I was doing, and then all of a sudden, these packages would start arriving and I would have no clue what was in them – usually jewellery (cheap stuff) or clothing from Zulily (an online store I love).

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On the other hand, when the inevitable crash came, I would crash hard. All I wanted to do was curl in the fetal position in bed and sleep…so that’s all I did. I didn’t bathe, I didn’t eat, chores went by the wayside, forget about cooking and crafting. I did the bare minimum to keep my cat alive and my husband had to fend for himself after a 12 hour day at work when it came to eating, plus do the dishes. I rarely left the bedroom, unless it was to spend mindless hours on the computer doing nothing.

Once we realized how serious the problem was, my husband and I realized it was critical that I needed to be on medication. I saw my doctor and was started on Seroquel. After that drug stopped working, I’ve been taking Abilify, which has been excellent for me in terms of managing my symptoms. Unfortunately, the side effects have been harsh and I’ve been paying the price.  I am not a vain woman, but I’ve put on 20lbs since using the medication (in 6 months) and it’s 20lbs I can’t afford to carry on my 5’2″ frame. I have no ability to exercise and lose the weight, especially now that I’m wearing an Air Cast on my left ankle to try to help reattach a tendon that has torn away from the bone. Plus I take other medications that all have their own side effects…so I have to be careful with those as well.

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I’ve also experienced some other unpleasant side effects including severe brain zaps, and I’ve been seeing shadows on the sides of my vision. These were enough to send me back to my Psychiatrist to discuss making another medication change – the dance that you tango when you have a mental illness. He’s decided to try me on one of the older drugs that is less likely to cause weight gain like so many of the newer ones do. It’s called Zeldox (my family doctor says it sounds like a cartoon character and I agree!) and the side effects listed are as follows:

  • constipation
  • cough
  • diarrhea
  • dizziness
  • fatigue
  • flu-like symptoms (e.g., fever, sore throat, chills)
  • leakage of fluid or milk from breasts (women)
  • menstrual changes
  • nausea or upset stomach
  • rash
  • restlessness
  • runny nose
  • sexual difficulties
  • vomiting

In general, most of these are mild and go away in the first couple of weeks of taking the medication, so I’m not too concerned. I’m just hoping that the brain zaps disappear as this is one of the most unpleasant of all the side effects that I experience. What is a brain zap you ask?

Brain zap or brain shiver is a term used to describe the sensation of a sudden jolt or buzz in the brain. It is also compared to the electrical shock, has no apparent cause and is brief in duration. In most cases, it’s relatively mild but people have reported the occurrences of very extreme and painful jolts. They are a temporary occurrence. Brain zaps can sometimes be accompanied by dizziness, tinnitus, mild pain and ache and a general sense of discomfort.

I experience mine as a buzz that goes across my head from ear to ear. I can hear the loud buzzing sound as well as feel it, but there isn’t any pain. It’s almost like the hum of an electric razor, but very quick and sudden. Sometimes it’s just one zap, sometimes it’s a series of them. They’re mostly just annoying more than anything but a side effect I can do without due to their frequency.  The shadowing I’ve been getting in my vision is more worrisome as I tend to freak out about anything to do with my eyes. I have no eye problems (other than wearing glasses) and I’d like to keep at least one body part in good shape for as long as possible if you know what I mean!!

I start the new medication on Monday, Dec. 17th but am writing this post to be read in February so I’ll add an update underneath so you know how it’s going.

Bipolar Disorder can be tricky to manage but with the right care, the proper medications and taking them at the right times, it can lead to a normal life. I’ve found the perfect balance between mania and depression. Now I’m able to function most days with the cooking and cleaning when my other health issues allow it and my poor husband can come home to dinner waiting most of the time. I feel more likely to work on a craft than when I was in a depressive crash, and while my sleep still isn’t the greatest, I’m not staying awake for days on end either.

Sometimes called Manic Depression, Bipolar Disorder causes extreme shifts in mood. People who have it may spend weeks feeling like they’re on top of the world before plunging into a deep depression. The length of each high and low varies greatly from person to person. If you are experiencing these symptoms, please see your doctor. There is help available and beyond that…

There is always hope!

Fibromyalgia and Loneliness

Having a chronic illness like Fibromyalgia can be a very isolating experience. Many of us used to work and found a lot of our social life revolved around our jobs, whether it was getting together with the gang after work for drinks or volunteering with a workgroup for a community project. Often, a best friend was made at our jobs whom we would hang out with more frequently, and those sorts of friendships became treasured relationships to us.

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After you become chronically ill though, you often have to give up working, and those relationships no longer exist, not even with the “best friend” that you made. How do you handle the loneliness that comes from that? We tend to not go out a lot in the first place, because of pain and fatigue, so without a reason to get together with former co-workers, there’s now more reason to isolate ourselves than ever. It’s depressing to know that you’re no longer “part of the gang”  and that you don’t fit in anymore. It’s even more depressing to know that your former friends don’t even realize that they’ve shut you out. It’s just the natural progression of you no longer being at the job, and nothing personal.

Reaching Out

But what happens when you try to reach out, to make plans, and people don’t return calls? Or when people reach out to you, but you’re unable to go, because their plans are too ambitious for you? I’d love to see people for coffee, but they always want to combine it with shopping followed by dinner and drinks afterwards, and that’s too much of a day for me. Lunch and shopping, I can do that on a good day, but then I want to go home. And if it’s a bad day, then I have to say no right from the start. And what happens if I start having too many bad days when friends want to get together? They stop calling, period. I am “too sick all the time” and no longer any fun to be with.  It’s easy to get depressed when this happens.

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It’s so frustrating when friends give up on you. I can’t control my good and bad days. I have no idea when a good day is going to go bad. I can feel great in the morning and then start to go downhill by the early afternoon. I try to explain that to people, but they don’t always understand how unpredictable Fibromyalgia can be. Sometimes it can change from hour to hour and even minute by minute. It’s like going outside in changing weather and never being sure of how many layers you should wear. Will you be too hot, too cold or just right? And what do you do with all those layers if you don’t need them?

There’s also the other side of the coin though. What if your friends continue to invite you out, but you keep turning them down? Your reasons seem valid; you’re in pain, it’s too much of a hassle, the weather is too difficult, you’re tired, or you just don’t feel like it. It’s easy to make excuses, but you also need to search the real reasons for saying no. Are the reasons you’re giving valid? Or are you turning down invitations because of depression?

Signs to Watch Out For

How do you know if you’re becoming depressed or socially isolated? Here are some signs to watch for:

  • Being less motivated to leave your home
  • Feeling more anxious or worried when leaving the house
  • Declining invitations from friends or family to meet or attend gatherings
  • Planning fewer social opportunities for yourself
  • Ignoring supports when they reach out to you
  • Seeing only negatives associated with social connections

If you recognize any of these symptoms, please see a doctor in order to be treated appropriately. If you want to be more socially active, but find your friends are not as available as they’ve been in the past, the following suggestions might be helpful for you:

  • Volunteer with like-minded people
  • Help out in an animal shelter
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  • Take up a new hobby
  • Join a support group (in person or online)
  • Join a Social Group in your City (look on Craigslist)
  • Keep a journal – it can help put things in perspective

Loneliness can be hard to deal with, but with the right understanding and support, you can overcome it. Make sure you’re staying in touch with people and not isolating yourself, and reach out to others if your friends have stopped reaching out to you. It’s okay to move forward and make new friends. Listen to your body and do what’s right for you. If you’re feeling up to it, go out and make new friendships through volunteer work or so social groups. If you need to take a break from socializing, that’s fine. Just don’t fade into the woodwork. Remember, your presence is valued no matter how much of it you are able to give at any time. You are loved. And as I always say…

There Is Always Hope!

 

 

Another Offering Of Joy

It seems like all of us are looking for more joy in our lives. Appreciation is one of the easiest ways to feel better right away. No matter what is going on in your life, you can always find something to be grateful for.  When you start to appreciate those things you do have in your life, the feeling of joy will expand as you focus more on it. We are meant to be joyous and living a fulfilling life!

So why is it that most people are not doing that? It’s because they aren’t doing the things they absolutely LOVE to do. It’s time to figure out what we love and then fill our days with being and doing it!

Back in August of 2018, I wrote a well-received post called That Which Brings Me Joy. I followed up with A Little Bit More Joy in September which again was quite popular. Here for 2019 are 75 more ways to bring joy back into your world:

  1. Talk to a Stranger
  2. Go to the Theater
  3. Exercise
  4. Power Down Your Gadgets
  5. Try Something New
  6. Spend Time With Your Favorite Animal
    Adorable puppies and kittens and bunnies together together with cats little friends friend dog sweet cute animal bunny orange
  7. Practice Forgiveness
  8. Create Something Artistic
  9. Get a Houseplant
  10. Give Thanks
  11. Breathe Deeply
  12. Meditate
  13. Do Some Spring Cleaning
  14. Take a 30-Minute Walk
  15. Read a Novel
  16. Join a Team
  17. Do a Good Deed
  18. Get a Good Night’s Rest
  19. Stop and Smell the Roses
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  20. Get Outdoors
  21. Light a Candle
  22. Laugh
  23. Sing Your Heart Out
  24. Organize Your Bedroom
  25. Get Some Fresh Air
  26. Smile
  27. Take a Yoga Class
  28. Soak Up the Sun
  29. Take a Power Nap
  30. Eat a real Breakfast
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  31. Reflect on Your Daily Accomplishments
  32. Take Pride in Your Appearance
  33. Let Your Imagination Run Wild
  34. Sit Up Straight
  35. Practice Positive Affirmations
  36. Give Back to Your Community
  37. Savour Good Memories
  38. Be an Optimist
  39. Give More Hugs
  40. Work With Your Hands
  41. Don’t Worry About What Others Think of You
  42. Shower Yourself With Self-Love
  43. Live in the Moment
  44. Be on Time
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  45. Drink More Water
  46. Daydream
  47. Listen to Music
  48. Appreciate a Work of Art
  49. Let Go of Anger
  50. Spend Time With Friends and Family
  51. Buy Now, Enjoy Later
  52. Earn Your Indulgences
  53. Don’t Over-Indulge
  54. Pop in a Sappy Movie
  55. Read the Newspaper
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  56. Be Spontaneous
  57. Play in the Dirt
  58. Make the Bed
  59. Spend Time With Happy people
  60. Write Down Your Aspirations
  61. Make Time for Yourself
  62. Grow Your Own Vegetables
  63. Simplify
  64. Express Gratitude
  65. Read Something Spiritual
  66. Appreciate Your Surroundings
  67. Have a picnic
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  68. Hold hands with someone special
  69. Travel to a new city or country
  70. Sleep in
  71. Play a board game
  72. Create a photo album
  73. Jump in puddles
  74. Donate unwanted items to those in need
  75. Say I Love You more often

Joy is equal to happiness plus love. Isn’t that what we all want in our lives? Remember…

There Is Always Hope!

Chronic Illness and Anxiety

When you’ve been diagnosed with a chronic illness, you may feel as if you’ve lost control over your future. The stress of learning to deal with doctors and specialists, coping with physical changes, and managing daily life can often lead to excessive worry or stress. Researchers have found that experiencing a chronic illness puts a person at increased risk for developing anxiety or an anxiety disorder. Roughly 40% of people with cancer report experiencing psychological distress that often takes the shape of excessive worry or panic attacks.* People with ongoing, or chronic pain are three times more likely to develop symptoms of anxiety.**

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The daily demands of living with a chronic illness continues to present challenges and generate anxiety long after the diagnosis has been given. Loss of mobility or other abilities can lead to worry about employment or financial concerns. Depending on others, worrying about becoming a burden or even intimacy with your partner may also be concerns. Some people are more easily able to adapt to the changes in their lives. Others may feel overwhelmed with anxiety and struggle to cope. Still others may be in limbo, unable to make decisions about their future.

The Most Common Anxiety Disorders are:

1. Generalized Anxiety Disorder (GAD) involves excessive and uncontrollable worry about everyday things, such as health, money or work. It is accompanied by physical symptoms such as restlessness, irritability, muscle tension, fatigue and difficulty sleeping or concentrating.
2. Obsessive-Compulsive Disorder (OCD) entails persistent, recurring thoughts (obsessions) that reflect exaggerated anxiety or fears. Someone with OCD often will practice repetitive behaviors or rituals (compulsions). For instance, obsessing about germs may lead someone with OCD to compulsively washing hands—perhaps 50 times or more per day.
3. Panic Disorder includes severe attacks of terror or sudden rushes of intense anxiety and discomfort. Symptoms can mimic those found in heart disease, respiratory problems or thyroid problems, and individuals often fear they are dying, having a heart attack or about to faint. The symptoms experienced during a panic attack are real and overwhelming, but not life threatening.
4. Posttraumatic Stress Disorder (PTSD) can follow exposure to a traumatic event, such as a car accident, rape, a terrorist attack or other violence. Symptoms include reliving the traumatic event, avoidance, detachment or difficulty sleeping and concentrating. Though it is commonly associated with veterans, any traumatic event can trigger PTSD.
5. Social Anxiety Disorder (SAD) is characterized by extreme anxiety about being judged by others or behaving in a way that might cause embarrassment or ridicule. People who have SAD have what feels like exaggerated stage fright all the time. SAD is also called social phobia.

Specific phobias are intense fear reactions that lead a person to avoid specific objects, places or situations, such as flying, heights or highway driving. The level of fear is excessive and unreasonable. Although the person with a phobia recognizes the fear as being irrational, even simply thinking about it can cause extreme anxiety. I personally am terrified of the Dentist, even though they treat me gently and with compassion. I have to take medication to help relax me in order to go for a simple cleaning.

Fortunately, anxiety is treatable with therapy, medication and complementary and alternative treatments (i.e. acupuncture, massage therapy, ). But when the focus is on the chronic illness, anxiety is often overlooked. That’s why it’s important to talk to your doctor about your emotional and cognitive health, and to speak up when you experience signs of anxiety.

Emotional symptoms of anxiety include:

  • Becoming easily agitated, frustrated, and moody
  • Feeling overwhelmed, like you are losing control or need to take control
  • Having difficulty relaxing and quieting your mind
  • Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
  • Avoiding others

Physical symptoms of anxiety include:

  • Low energy
  • Headaches
  • Upset stomach, including diarrhea, constipation, and nausea
  • Aches, pains, and tense muscles
  • Chest pain and rapid heartbeat
  • Insomnia
  • Frequent colds and infections
  • Loss of sexual desire and/or ability
  • Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
  • Dry mouth and difficulty swallowing
  • Clenched jaw and grinding teeth

Cognitive symptoms of stress include:

  • Constant worrying
  • Racing thoughts
  • Forgetfulness and disorganization
  • Inability to focus
  • Poor judgment
  • Being pessimistic or seeing only the negative side

 

What You Can Do

Challenge negative thinking. When you’re anxious, your brain may jump to conclusions, assume the worst, or exaggerate. Catastrophizing and ignoring the positives in your life may occur when you live with the challenges of a chronic illness. One way to manage anxiety is by being aware of the negative thinking, examining it and challenge the irrational thoughts. Counselors/therapists can play an important role in teaching you this important coping skill.

Calm your mind. Relaxation techniques can be an effective way to calm anxious thinking and direct your mind to a more positive place. Consider whether mindfulness meditation, yoga, or other breathing and focusing practices can still your body. Taking  time to relax, increases your ability to think objectively and positively when it comes to making choices about your health and life.

Find a good Doctor. If you take medication for both mental and for physical health, it’s important to that your doctors are aware of all your medications. Some medications may actually escalate anxiety, so it’s essential to work with a prescriber who can make informed choices that address both conditions without worsening either.

Find a support group. Managing a chronic illness can be a lonely job as it may be difficult for loved ones to understand the unique challenges. Support groups, whether online or in person are wonderful for creating community but also for providing information that can help reduce worry. They can also connect you to valuable resources for treating your illness.

Acknowledge successes. Anxious thinking about chronic illness can keep you from feeling that you have control over anything in life. It’s important to acknowledge all successes, both big and small. Keep track of the healthy things you do for your mind and body. Exercising, going to counseling, spending time with a friend–these can all help. Keeping these successes at the front of your mind can help you combat worry. They can remind you that you do have the power to affect your present and future.

If you think that you might have anxiety in addition to chronic illness, be honest with your doctor. Ask for help. Anxiety is highly treatable, so remember…

There Is Always Hope

*https://adaa.org/serious-chronic-or-terminal-illnesses
**http://www.health.harvard.edu/mind-and-mood/depression_and_pain

The February Poem

february

 

The shortest month it seems to me
the one that goes by so quickly
Is often dark and gloomy…wet
Winter-ish, not quite Spring yet

My hummingbirds return to feed
I give them all the food they need
Those saucy birds put on a show
And tease my cat too, don’t you know

There are some days that shine like gold
The sun so bright, those don’t grow old
I long for them, they warm my heart
While I yearn for Spring to start

The gloomy days, they start to brighten
Mornings also seem to lighten
The days get longer bit by bit
And I for one am glad of it

A Summer girl I am for sure
Winter’s something I endure
Fall is lovely, this is true
And Spring brings promise bright and new

But February on its own
Just seems so harsh and bleak, alone
I think the month needs a vacation
Someplace warm for recreation

Let’s send the month on Holiday
And have an extra month of May
Or June, July or August too
Any Summer month will do

February can return one day
When all its blues are chased away
In the meantime, tell me true
I think this plan will work…don’t you?

There Is Always Hope!

 

 

Invisible Illness – But You Look Fine!

One of the hardest parts of living with an Invisible Illness such as Fibromyalgia, MS, Ehlers Danlos, etc. is that you quite often look just fine on the outside, while your insides are screaming in pain. This leads many people to wonder if you truly are ill, or how serious your illness actually is. How do you handle this, as a Person with Chronic Pain (PwCP)?Screen Shot 2018-12-10 at 10.56.48 AM

For one thing, you should never have to make excuses for your pain to anyone. What you feel is what you feel, and there is never a reason to justify it or prove it, not even to your doctors. For years, people with Fibromyalgia went undiagnosed or misdiagnosed because Pain was often the only symptom a patient could describe. There are no other outward symptoms and nothing comes back in the blood tests or x-rays that a doctor might order. It’s only through using the 18 Tender Points and determining how many of them you have that a definitive diagnosis can be made for Fibro.

Other diseases often come with outward symptoms – the “butterfly rash” of lupus, the enlarged joints of Rheumatoid Arthritis, the dislocating joints of Ehler Danlos, the varying symptoms of MS – all of them a visual reminder that there is something wrong with a person. Fibro doesn’t present itself that way, and so a person can often look “normal” like everyone else, yet be in a flare up.

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So how do you handle it when the people who are closest to you don’t believe you are ill or doubt the severity of your illness. The first step is to educate them on what Fibromyalgia is: a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and mood issues. It is essentially a very painful, exhausting disease, for which there is no cure and few treatments.” It is becoming much more recognized in the Medical field, unlike in the past, and is well accepted as a legitimate condition, just like arthritis, Lupus, MS, etc.

Basically, your brain miscommunicates with the nerves in the spinal cord and sends out the wrong messages to your body, resulting in an overload of symptoms. This graphic may be helpful in showing you just some of what you can experience:

FibroSymptoms2

And this is the reason it’s such a hard disease to diagnose because these symptoms are often looked at just on their own, and not seen as part of the bigger picture. It’s no wonder people look at us and think we’re crazy. To have all these symptoms and yet still look perfectly normal on the outside…well, I’d wonder too perhaps. That’s where the education comes in. The more we teach people about Fibromyalgia and how it mimics so many other diseases, the more people will realize just how huge a burden we are carrying every day.

Nobody wants to be told they look awful though, so how do you break this Catch-22? You want people to see you as you really are, but you don’t necessarily want to look ill at the same time. Are you obligated to dress up and put on makeup everytime you go out, just to look “good” for strangers? Of course not, but I am advocating that you do it for yourself if you’re able. Run a brush through your hair, throw some lipstick on, go for a trendier haircut or a manicure. Never do it for someone else though and never let a stranger’s comments get to you. Only you know how you’re feeling at any point and sometimes it’s just not possible to do these sorts of things. Pain may get in the way, or finances or depression…in these times, just do the best you can with what you have in the way of energy and time and desire.

Remember…you are perfect just the way you are…everything else you do is a bonus.

Education of others is key, and I truly believe that the more we can share about Fibromyalgia and other Invisible Illnesses with them, the more they will understand what we are going through, and the more compassionate they will become. Perhaps then they will stop commenting on how “fine” we look, and will start seeing us in a true light. Maybe they will see our struggles, our problems, our symptoms and what we have to go through on a daily basis just to survive and finally understand how difficult our lives truly are. Then and only then will come the appreciation and admiration we’ve been waiting for.

There is always hope.

 

Fibromyalgia – In Tune With Our Bodies

I’ve been thinking lately of how lucky I am that despite the fact I live with Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia and Invisible Illnesses, I’m actually quite healthy. I know that sounds like an oxymoron, but I rarely come down with colds, I can’t remember the last time I had a flu or stomach bug or even when I could say I was “sick”. I try to remember to get a flu shot each year because I’m Diabetic, but it didn’t happen last year and so far this year, I haven’t made it to a clinic either. It’s also in my best interest to get one, because since having surgery for severe Gastric Reflux Disease in 2004, I am unable to physically vomit – if I get sick where vomiting becomes an issue, I have to go to the hospital and have a nasal gastric tube placed to remove my stomach contents. Not fun!!

As the old saying goes, aging ain’t for sissies! When you live with Fibromyalgia, you live with all sorts of “side effects”. This diagram displays some of the many “extras” a Fibromite can expect to experience:

FibroSymptomsDiagram

These are all common symptoms and it can be difficult to tell them apart from other illnesses, which makes it extremely important to be aware of your body and to note when something feels “off” or different than what is normal for you. We are generally quite in tune with our own bodies and are quickly able to determine when a new symptom appears that doesn’t fit in with our usual symptoms.

What happens though when you do experience something that you’re unsure of? Your first step should always be to see your Primary Health Care Provider anytime something comes up that is markedly different than your normal. It could be one of Fibromyalgia’s many symptoms, but it’s always better to be safe. I remember one time many years back when I started having severe pain in the lower left quadrant. It happened when I was living in Calgary and I had just finished a volunteer shift at the Calgary Stampede grounds. I’d eaten a corn dog and a few minutes later, was suddenly hit with terrible pain in my lower left side. I could barely walk but managed to make it on to the C-Train (the Lite Rapid Transit) and then called my husband to pick me up at the station to take me to the hospital. It turned out that a cyst that I didn’t know I had on my ovary had burst. I was prepared to put it down to something Fibro related and the only reason I got the proper diagnosis is because the pain was so bad, I went to the ER.

It’s easy to be dismissive of everything we feel and call it Fibro related, so we have to be careful not to fall into this trap. How do you tell the difference between Fibro related pain and something new or different for you? Here is a checklist to use:

  • Familiar or not – have you felt this same symptom before, or does this feel like something “new” to you?
  • Does it last longer than usual? This could potentially be a new situation that needs attention
  • It it more intense than usual? This could be the sign of a new problem
  • Is it in a new part of your body? This is more likely the sign of something new
  • Did it start suddenly or gradually? Gradual pain is more likely to be Fibro related.
  • Does something just feel “off” to you? Trust your instincts!

It’s recommended that everyone go for an annual checkup, but it’s especially important that you and your doctor stay in touch with how you are doing, outside of your Fibromyalgia. Don’t forget about the rest of your health.

Speaking of health, I want to share this new Health Alphabet. It may be helpful in future medical discussions, especially if aging is becoming a concern for you:

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Okay, a little humour never hurts, but when it comes to Fibromyalgia and changing symptoms, you do need to be careful not to overlook something that could have the potential to be serious. Always trust your instincts about how you’re feeling and see your doctor if something just doesn’t seem right. It’s better to be safe than sorry.

There is always hope

Do Migraine Glasses Really Work

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Today’s post is from Guest Author John Martinez. John  is a writer from California who sufferers from chronic headaches and occasional migraines. He works for Axon Optics, showing migraineurs how to treat their condition using science and clinical research.

 

 

Migraines can be, for lack of a better phrase, a real headache. Once you start to feel the symptoms of a migraine coming on, it can be hard to get away from the tumbling snowball of pain, dizziness, and sensitivity hurtling towards you. People with migraines know how desperate attempts to find treatment can be.

Migraine glasses are a hot item on the market right now, but if you’re skeptical about whether they work to prevent or treat migraines, you’re not alone. This guide can help you decide whether or not migraine glasses are for you and how they can help relieve common migraine systems.

What Are Migraine Glasses?

Migraine glasses (also known as “precision tinted glasses,”) have FL-41 lenses to block out specific light wavelengths that trigger photophobia and light sensitivity symptoms. Photophobia and migraines are closely linked; many migraine sufferers find that migraine glasses relieve migraine symptoms or prevent common migraine triggers.

About Photophobia

Let’s go back to a word that you might not have seen, but probably have experienced before: photophobia. No, it’s not the fear of photographs or selfies. Photophobia isn’t the fear of light either, but it is a word used to describe an extreme sensitivity to light. People with photophobia experience a range of symptoms. Some people may be only sensitive to bright lights, whereas different types of lighting (fluorescent, LED, sunlight, etc.) may be more triggering.

How Migraine Glasses Help Patients With Photophobia and Migraines

Experts at the John A. Moran Eye Center at the University of Utah Health Sciences Center have been studying the causes and effects of photophobia for quite some time. They discovered that certain wavelengths are more triggering than others. Blue-green wavelengths were most “dangerous” to people with photophobia.

These awesome Utah experts also discovered that a special type of lens filtered out these annoying blue-green wavelengths. These lenses (also known as “FL-41 lenses”) have a rose tint. Migraine glasses use FL-41 lenses to help people with photophobia get through the day or a migraine with mitigated symptoms and an increased tolerance to light.

These glasses aren’t just designed to be worn at the time of a migraine. A 2014 study revealed that three out of four migraine sufferers experienced light sensitivity throughout the day, even after they stopped experiencing migraine symptoms.

“Why can’t you just wear sunglasses?”

This last finding is especially important. Photophobia doesn’t switch on and off like a light switch. Moving from a dark to lit room can trigger photophobia. Long periods of screen time can trigger photophobia. Flashing lights can trigger photophobia.

Even if these lights aren’t particularly bright, they can still trigger photophobia – after all, people with photophobia have a lower tolerance for many different types of light. And it’s hard to determine when or where these triggers might appear in your daily life.

Many people ask themselves (or migraine sufferers) why they just can’t wear sunglasses to treat photophobia. For many people, the answer isn’t to make the room darker – it’s to avoid the types of wavelengths that are most triggering.

Plus, who wants to wear sunglasses 24/7?

Light Sensitivity Relief Helps Reduce Other Symptoms

The effects of migraine glasses aren’t just limited to light sensitivity. Often, migraine sufferers link light sensitivity to pain, anxiety, and discomfort. When walking into a room with bright lighting or looking at your work computer is more comfortable, your day becomes easier and you can avoid migraines triggered by stress or discomfort.

Migraine Glasses Aren’t Just For People With Migraines…

So the answer to our question (“Do migraine glasses really work?”) is: yes. But migraine glasses don’t just help people who suffer from migraines.

Migraine glasses have been tested and proven to help patients who suffer from benign essential blepharospasm (BEB.) People with BEB often experience rapid eye blinking or eye spasms. They also experience a similar type of photophobia as people with migraines.

Other studies have shown that migraine glasses can help to relieve photophobia symptoms in blind migraine sufferers and blind people with photophobia. That’s right; even blind people can experience migraines and sensitivity to light. Photophobia is much more common than you might think, especially if you have migraines.

Migraine Glasses Might Be For You

You might have read to this point and thought, “I don’t have photophobia, so these glasses probably won’t help.” Pump the brakes. Unfortunately, a lot of migraine sufferers don’t realize they have photophobia. Light sensitivity is often overlooked or misdiagnosed alongside all of the other insufferable side effects of migraines.

Researchers at the Baylor College of Medicine asked 84 migraine sufferers whether or not they suffered from photophobia. Twenty-four percent of respondents said they didn’t. After more questioning, the researchers discovered that over 90% of participants did experience some sort of light sensitivity or photophobia.

Talk to a medical health professional about the symptoms of photophobia and how they may affect your migraines.

Where To Find Migraine Glasses

When you start shopping online for migraine glasses, know that you will come across a very similar cousin: blue-blocking glasses. These glasses (also known as “blue light” glasses) help to filter out blue wavelengths that we absorb when we stare at screens. Users offer rave reviews of blue blocking glasses…but these users don’t always suffer from migraines.

The difference between FL-41 glasses and “blue blocking” glasses is that FL-41 glasses focus on the wavelengths that specifically trigger photophobia or migraines. These wavelengths can be found across the blue-green spectrum. There is no harm in trying blue blocking glasses, but people with photophobia may find migraine glasses to be more effective than blue light glasses.

Look for glasses that specifically have FL-41 lenses. Axon Optics, for example, are a popular brand of light sensitivity glasses (migraine glasses) that use FL-41 lenses to relieve symptoms of migraines and light sensitivity.

FL-41 lenses don’t just come in one type of frame or style, either. Migraine sufferers can even find relief in FL-41 contact lenses that have been recently developed for the market.

If you suffer from migraines, migraine glasses are definitely worth a try. Enjoy a life with decreased light sensitivity and reduced migraine symptoms. See the world through rose-colored glasses…literally and figuratively!

Chronic Pain and The End Of Life

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Chronic Pain can be so debilitating that you may sometimes wish for an end to it all. Although I will touch on assisted suicide in this post, it’s also never too early to have your plans in place for end of life care and preparations for what happens when you do pass away. It’s a difficult subject that no one wants to talk about but I’ve never been one to shy away from the hard topics before.

Wills and Financial Planning

Speak with your lawyer and make sure you have a current will. Discuss estate planning, trust funds, donations and any other legal matters so everything is up to date. Your Financial Planner can also help you set up your affairs so that it’s easy for your family to follow your plans. Make sure your financial planning is sound and in line with personal desires.

Make a Plan

To ensure your end-of-life care is handled the way you want, make a comprehensive plan. This allows you to outline everything about the care you wish to receive once you are no longer capable of making your own decisions (like pain management or DNR instructions). Involve your family and friends in your end-of-life plan so that anyone who might be responsible for your care knows exactly what your wishes are. Have them use it like a guide, and be sure to talk through anything they might not agree with or understand to make sure they know why you want things a certain way.

Keeping your loved ones in the mix serves multiple purposes: Not only does it help you better protect yourself, it helps them process and work through your ailing years and eventual passing. A plan you’ve discussed and prepared your family for will bring them ease and relieve a huge burden.

Talk to them about those feelings of loss. Make sure they have an understanding of what to do when that loss happens to help them cope; how to ask for help, how to get help with those feelings. Helping your loved ones can also help you come to terms with your own end-of-life process. You may have many years to live or your health may be such that you are facing the end of your life much sooner. Being prepared for death is perhaps the most difficult thing you will ever experience in your life. Here are a few things to consider:

  • Say the “6 Things” you need to say to your loved ones, friends and enemies. It is never too early to say these things.

“I’m sorry.”
“I forgive you.”
“Thank you.”
“I love you.”
“It’s OK to die.”
“Goodbye.”

  • What are my beliefs about death? Do I need to make peace with myself or a Higher Power?
  • Do I need psychological, emotional, spiritual care, counseling or support?
  • Have I left a legacy? Identify life lessons, advice, hopes and dreams that you would like to pass on to family and friends. Write or record these. Identify a person who can pass these along to the people to those whom you wish to receive your legacy.
  • Have I written my personal history? You can write it down, or record on audio or video tape, etc. Who is to get my personal history?

Funeral Arrangements

Many people decide nowadays to make their funeral arrangements in advance, to spare their family the task in their time of grief. Most reputable Funeral homes have options to pre-pay for services including cremation, caskets, urns, plots, etc., so you can rest assured that everything is taken care of in advance. Contact the Funeral Home of your choice to discuss your wishes with them. Most of them offer a free planning book as well to help you organize all your paperwork in the event of your death – your wills, banking information, life insurance, important contacts, etc.

Assisted Suicide

Assisted Suicide is a very controversial topic these days. I want to state clearly that I am FOR assisted suicide when every option has been played out and a terminally ill person has reached a point in their health journey where they have no further reason to go on. People who opt for AS are not looking for a quick solution – they have put a lot of time and thought into their decision and they know it’s the right choice for them.

We treat our animals more humanely than we do people, and when the time has come when a person is ready to die, I think we owe them the option to do so with dignity. I live in Canada, where Euthanasia became legal in 2016 for patients experiencing intolerable suffering. Strict laws govern access to legal assisted suicide in Canada and there have been at least 744 assisted deaths since the law was first passed.

These are hard things to talk about, but the fact remains that the more prepared you are in advance, the easier things will be in a crisis later. Just remember though that despite the nature of chronic pain, everything is worth fighting for… love, laughter and life itself. It is always my signature at the end of each post but today, I mean it even more…

There is always hope

 

 

Surgical Solutions And Resilience

If you read my last post, you know that I live with a number of health issues, and have for many years. What I didn’t talk about was a more recent issue that has come up involving a bump on the back of my left ankle and my Achilles tendon that is tearing away from the bone.

The bump is called a Haglund’s Deformity. I’ve had it for over a year now and it seems to have developed after I had my right hip replaced, perhaps in response to a changed gait in my walking. I didn’t notice it at first, not until it became painful. What my Physiatrist (my pain doctor) and I didn’t realize is that it was also affecting my Achilles Tendon and that tendon was slowly pulling away from the bone. It wasn’t until I could no longer walk without constant pain that we came to understand the full severity of what we were dealing with. 

I was sent for x-rays and the results showed the truth. Since November 2018. I’ve been wearing an Air Cast to help protect my ankle and reduce the pain when I walk. We’ve tried Botox in the calf muscles to try to tighten the tendon so it will reattach to the bone, but if this doesn’t work, it’s going to mean a complicated ankle repair in surgery. 

So, why I am I sharing this with you?  Because this isn’t the only surgery I’m facing in the next little while and I want to talk about resilience. 

Resilience is a funny word. The official definition is this: 

re·sil·ience
[rəˈzilyəns]

NOUN

1. the capacity to recover quickly from difficulties; toughness.
“the often remarkable resilience of so many British institutions”

2. the ability of a substance or object to spring back into shape; elasticity.
“nylon is excellent in wearability and resilience”
synonyms:
flexibility · pliability · suppleness · plasticity · elasticity · springiness ·

Now, I wouldn’t say that definition number 2 is all that appropriate as I certainly don’t feel all that “elastic” or “springy”.  I do agree with the first one though. I think I have a remarkable ability to recover from difficulties. With everything I’ve been given in life to handle, and each new challenge I’ve been given to face, I’ve been able to rise to the occasion and deal with it as it’s happened.

As I said, I am facing another surgery this year and it’s one I never thought I’d hear myself say – Brain Surgery. Because of my Trigeminal Neuralgia, we have come to the point where I’ve exhausted every medication out there and I’ve been left with no other options for treatment. I am meeting with the Surgeon on April 30th and the surgery we will be discussing is called Microvascular Decompression. It has an 80% success rate, which is the highest of all the available surgeries, and is the least likely to cause lasting facial numbness afterward.

Trigeminal nerve branches

In Microvascular Decompression surgery, the Neurosurgeon creates an opening in the skull behind the ear on the affected side and using delicate tools, places a sponge between the nerve and the blood vessel causing compression, which in turn reduces the irritation caused by the nerve. It also prevents almost any facial numbness from happening which is a common side effect in most other surgical procedures, such as Sensory Rhizotomy, Gamma Knife Radiosurgery or Peripheral Neurectomy.  A small titanium plate is used to replace the bone removed and is put into place with tiny screws. 

A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.

MVD sponge placement

A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.

After the surgery, you spend a night in the ICU and then 1-2 days in hospital before being released to recover. 

It all sounds pretty scary, but it’s my best hope for relief from this insidious pain. I’m now averaging a flare up every week and they generally last for 12 hours at a time. It’s sheer agony when they happen – there’s a reason this condition is called the suicide disease. 

So, how do you bounce back from something like this? Where does the courage come from? Part of it for me is my faith in God. Part of it is my natural positive outlook on life. My Dear Readers know that my motto is “there is always hope”. I end each post with those words, they are tattooed on my left arm, they are my favourite words from the movie The Lord of The Rings, when Aragorn is talking to the young boy just before the Battle at Helms Deep. They remind me that no matter what we are facing in life, things could be worse. I know that might sound silly, but truly, they could be. I could be facing a terminal illness, not just an issue that causes tremendous pain. There could be NO solution for me at all.

The thing is, I believe we have a choice in how we react to news, good and bad. Being joyful is easy in good times, but I choose to be joyful in the bad times too. I choose to stay positive in the dark days. I choose to believe that things can get better. My attitude is one of gratitude despite the circumstances. And I encourage others to try to do the same thing. You have a choice. Be resilient. Fight with all you have inside you. Choose to find the joy in your circumstances, as small as it might be. Remember…

There is always hope.