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:

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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.

I Need You To Need Me

intimatecouple

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

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.

180418lonelymum

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
    34437-full
  • 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!

 

 

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.

 

Chronic Pain and The End Of Life

Helping hand

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