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

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.

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

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

 

 

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

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

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

One Liner Wednesday Contest

Linda G Hill is a great blogger who has a lot of fun with her readers. Every year, she does a new Badge Creation for her One Liner Wednesday series. I’ve decided to enter this year since I was lucky enough to be the “Streams of Consciousness” winner last year. 

Here is my entry:

Disapproving Cat

I’m hoping to have success with this…and I wish all the entrants good luck!!!

There Is Always Hope

Interview April – Amber Blackburn

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

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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:

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.

 

Refresher Course

I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • Hypothyroidism

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.

Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it.

Diffuse-idiopathic-skeletal-hyperostosis-DISH-of-the-spine-grave-290-male-50-60-yrs

I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing.

My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.

My Trigeminal Neuralgia is something I’ve talked about before so you can read the article about it here.  The same goes for my Bipolar Disorder.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis

what-is-gastroparesis

Now, the way they determine if you have this or not is through something called a motility test. 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 to having to feel better in order to die.

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 it, 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.

The Internal Pelvic pain is because I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

DraggingMyButt

Oohhh, that is NOT a good look on me!!! My doctor put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

So there you have it. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. Suffice it to say that you have to be mighty strong to live like this, to get through the day-to-day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.

One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.

I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.

Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.

So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…

There is always hope

Ending The Year

It’s December 29th and the year is drawing to a close. I want to take this time to simply recap the year and say thank you to my Dear Readers for spending your time with me in 2018.

From the beginning of the year, when I really got started blogging, I started out by writing Happy New Year .  My main theme at that time was to talk about my hip replacement surgery which was the real reason this blog came into existance. I had been searching for personal stories of “younger” women who had undergone hip replacements but hadn’t found much, so I thought I’d share my story for others who might find it helpful for themselves. One thing led to another and before I knew it, I was writing about my other health issues, including Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses.

I’ve had the opportunity to share my thoughts about body image, intimacy when you live with Chronic Pain, the sleeplessness that comes with Fibromyalgia and Invisible Illnesss, and how the simple loss of bathing can mean so much heartache. On the other hand, I’ve been able to share about gratitude and finding joy on more than one occasion, so I’ve tried to focus on the positives as much as possible, whenever possible.

I couldn’t do this without you. Without my Dear Readers, there wouldn’t be much sense in putting this out there, so I appreciate each and every one of you who comes to my blog and reads what I have to say. You may not comment on every post, heck…you may never comment on a post I write, but the numbers don’t lie. My stats show that you are there and that you keep coming back. In fact, when I took a week off and didn’t do a thing to market the blog…no Pinterest, no Twitter, no Social Media at all, the numbers dropped, but a bunch of you still came by to see if there was anything new.

Screen Shot 2018-11-29 at 3.47.10 PM

You can see where I was away for the week. On Nov. 15th and 16th, I was in Vancouver for a volunteer meeting, and away from my computer the whole time. When I put the effort in, you do the same and come back to see what’s new…the numbers don’t lie, and I am forever grateful.

So, to wrap up 2018, I want to say thank you. You’ve helped me reach a far greater level of success than I ever thought I’d make, simply because you like to read my thoughts. That’s pretty amazing to me. I just want to provide as much information as I can to anyone who is living with Fibromyalgia, Chronic Pain, Chronic Fatigue or Invisible Illness. I want you to know you’re not alone. I’m right there with you and for as long as I’m able, I will continue to write and bring you articles and information to help you thrive.

I wish each and every one of you a very Happy New Year. May you be blessed in 2019 with the very best the year can offer. Remember…

There is always hope