Positive Things About Chronic Illness

Living With Chronic Illness

Note: This post contains affiliate links. I will receive a small percentage from the total purchase price at no extra cost to you.

Living with a Chronic Illness such as Fibromyalgia, Multiple Sclerosis, Lupus, Ehlers-Danlos, etc. can be a challenge. So much of your time is taken up with medical appointments, tests, daily pain and discomfort, mobility issues and more.

We sometimes forget to take time to spend on positive, “non-medical” moments. Maybe it’s because we have to look for them, rather than have them always there. Maybe it’s because we’re so tired from being ill that it’s too much effort.

I believe it’s important though, to find those good things in the day or to create moments when necessary. I’d like to share a few ideas with you today to help you fill your time with positives.

Moments

Pets

Our pets bring us so much comfort, whether you live with Chronic Pain or not. If you do live with an Illness of some sort, this is especially true. Pets seem to have a way of knowing when we need an extra cuddle or two, and they’re always there for us. I have a wonderful cat named Dorie, who loves to lay on my legs when I’m on my laptop (like right now)

Dorie my cat, sitting on my legs, and bringing comfort from Chronic Pain

I can feel my stress dissipating as soon as Dorie lays with me. It’s a tangible and therapeutic benefit of cat ownership and a wonderful feeling period. If you don’t currently own a pet, it’s something to consider.

Books

I love to read and a good book can completely transport me away from a painful day. I get so caught up in the story I’m reading that everything else fades into the background.

My personal preference for books is stories of people who have overcome challenges, especially Chronic Illness of their own. I also love autobiographies and biographies in general, and books on True Crime. Ann Rule is a favourite author in that category.

A couple of suggested books and authors I adore:

Salt In My Soul is a wonderful book about a young woman who lived with Cystic Fibrosis. Mallory’s story is both joyous and sad as she talks about being a young woman with a fatal disease. Her mom takes up the story when Mallory can’t and shares her daughter’s life and dreams.

Let’s Pretend This Never Happened is by one of my favourite author’s, Jenny Lawson. This is a true account of her life growing up with mental illness and is absolutely laugh-out-loud hilarious. I also recommend her second book, Furiously Happy as a follow up!

You can also follow Jenny on her blog site, The Bloggess

Music

Everyone has their own preferences when it comes to music that makes them feel better. I have one friend who loves to rock out to death metal and another who prefers classical music.

I find that listening to the old classics is what works best for me, to distract me from pain and discomfort. I love Led Zeppelin, Pink Floyd, Queen, Electric Light Orchestra and so many more. When I can sing along with the songs, it’s easy to put pain behind me.

Choose a gendre that suits your style, or even your particular feelings for the day. Light and upbeat or dark and moody, the goal is to move beyond pain so your focus is elsewhere. Living with Chronic Illness is never easy, so music can often be a great distraction.

Videos/TV/Movies

Living with Chronic Illness often leaves you with a lot of free time. Some people are more visual than others and find that movies and/or TV are what helps them best. With services such as Cable, Hulu, Netflix and more, there’s an endless variety of content available.

One new thing that’s all the rage is ASMR videos. ASMR stands for Autonomous Sensory Meridian Response, and is a sensation of tingling that you get in the head and spine after viewing/hearing certain sounds or sensations. Hair brushing can bring this on, along with many other stimuli.

This Wikipedia article sums up ASMR nicely and you can find many videos on YouTube to help you experience the sensation. I haven’t personally tried it yet, but if you have, I’d love to hear about it…just leave a note in the comments section.

Another way of relaxing is by sitting outside and soaking up the sounds of nature. Birds, crickets, frogs…all of these can be peaceful and induce a sense of calm in the body.

Hobbies

I am just starting a new hobby of “Paint By Numbers” and have been given this kit by a company called Winnie’s Picks. I will be doing a full review of this product at a later date, when my painting is complete, but I wanted to share with you here what a wonderful kit this is.

Inside the solid mailing tube is everything you need to complete a full size painting. There is a canvas as well as a paper copy of the painting, several different sized brushes and all the paint you can possibly need to complete the work. You do need to frame this yourself when it’s done, but everything else is there. The prices are incredibly low for the quality of product too!

There are many hobbies that you can do when you live with Chronic Illness. You want to be able to work on things that you can pick up and put down when needed, but that still give you a challenge at the same time.

Some of the best hobbies to consider are needlework, knitting, crochet, felting, colouring, painting and working with paper, such as cardmaking. You can also get into more detailed work, such as embroidery, jewelry making, candle making, soapmaking and so much more. Tell me about your hobbies in the comment section. I’m always up for learning new things!

Conclusion

I love watching the hummingbirds that come to our feeder. They bring me such joy as they sip at the nectar I’ve left for them, and I can almost feel my blood pressure going down as I observe them.

Finding ways to live with Chronic Illness doesn’t have to be difficult. We generally have everything we need for distraction in our own homes. Sure, there are days when we just feel too ill to watch a movie or play around with a hobby, but for the most part, we can use the above techniques to distract ourselves.

What sort of things do you do on a daily basis, to manage your Chronic Illness? Share with me in the comments so we can all benefit. Remember,

There Is Always Hope

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Interview October – Michelle Curtis

It’s time for the annual series I run on There Is Always Hope called Interview October. I have spent time asking questions about health conditions that these amazing people are living with, and their replies help bring education and hope to my readers.

Today, we’re meeting my dear friend Michelle Curtis who runs the blog site The Zebra Pit. Let’s hear her story!

Include a photograph of yourself:

Introduce yourself and tell us a bit about you…

Hello! I’m a 47 year old queer disabled woman living in greater Cincinnati. I live a housebound life due to my conditions. Though I am completely disabled by my conditions, I work from home doing freelance writing and managing two websites. Lately, I’ve been working on reviving my creative writing career as a poet and fiction writer, as I’ve managed to improve my cognitive deficits enough to go back to writing and editing some shorter works.

I have been happily married for over 13 years and have a grown stepson whom I love very much, but get to see very little. I am an avid fan of the arts (both high brow and pop), music and nature and consider myself a lifelong learner. I am a huge fan of sci-fi and fantasy, love to learn about astronomy, archeology and science, and spent much of my life protesting the abuse of marginalized peoples and our planet.

I hold a BA in women, gender and sexuality studies with minors in ethnic studies and creative writing and a master of fine arts degree in creative writing. Prior to becoming disabled by my conditions, I worked as everything from a cab driver to a college instructor and have experience in the fields of education, communications, business administration, human resources, healthcare and non-profits, not to mention my illustrious career in retail and banking prior to going to college. 

One fascinating fact about me is:

This is always a hard question for me. I think all people are fascinating when you get to know them. I guess the thing that people are usually fascinated the most with is that almost nothing about me is considered conventional: I have disabling genetic disorders, I am neurodivergent, atheist yet spiritual, pansexual and feminist.

Chronic illness(es)/disabilities I have…

I am what is known as a Trifecta Zebra, as I have a trio of rare illnesses that are often seen together; Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). I also have gastroparesis, IBS, Fibromyalgia, ME/CFS, Dystonia, cognitive dysfunction with significant memory loss (both long and short term), coronary arterial spasm,  degenerative disc disease, osteoarthritis, CRPS in my right leg, endometriosis, and intractable migraine. I strongly suspect and am seeking diagnosis for chairi and/or craniocervical instability and autism. 

My symptoms/condition began…

As a child, though my symptoms wouldn’t become really apparent until early adulthood.  

My diagnosis process was… 

Fraught with misdiagnoses and errors. Despite my many health problems which I reported to every doctor, I was not diagnosed with EDS until I was almost 45. I was first diagnosed with fibromyalgia around age 40 and CSF a couple of years later. A couple of years after that, I was diagnosed with POTS. I had to find EDS and MCAS, figure out that I had them and then find doctors to diagnose and begin treating them. 

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

The cognitive dysfunction. I had developmental delays as a child and everyone thought I was just plain stupid and wouldn’t do much in life. I had terrible self-esteem and no faith in my abilities. I didn’t figure out I was probably pretty smart until my mid-twenties and finally went to college because I simply couldn’t manage doing the only sorts of jobs I could get, those with a high level of physical labor.

I spent years working toward a career I thought would save me and that I loved more than I could ever imagine allowing myself to love anything. By the time I was done, I no longer had the cognitive ability left to actually do the work I’d been trained for, even if I could find ways to accommodate my deteriorating tissues.

I’m glad I’ve found new things to consume my life with and I can’t say I regret the journey. But the knowledge that I could have had a brilliant career had I the capacity to go on is sometimes too much psychic pain to bear. These days I try very hard to focus on what I can accomplish and find focusing on the present helps me to avoid these hard truths.

A typical day for me involves…

I like to say I live on tilt, because I quite literally have to. If I spend too much time in the upright position, I suffer terrible pain and cognitive symptoms and sometimes have seizures. If I’m flat on my back, I develop pain in the back of my head. So I spend much of my day tilted back in a recliner, working on my blogs and writing, trying to avoid the pain caused by being completely upright or completely prone.

Most of my time spent upright is to cook (I cannot tolerate processed foods at all), do therapies and keep up my movement routines of recumbent bike riding and strengthening exercises. In the evening, I try to relax in front of the TV or with a good book. 

 The one thing I cannot live without is…

Myofascial therapy! I’d be in so much pain if not for it!

Being ill/disabled has taught me…

Never to judge other people’s lives or make assumptions about why someone does something.

My support system is…

My husband is my primary source of support, but we both have chronic health conditions so things can get pretty hairy from time to time, but we usually manage! The remainder of my support comes from within the chronic illness/spoonie community.

I know there are any number of people I can turn to for emotional support or needed advice regarding my health and wellness. I would be lost without them, as I have few others in my life.

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

It would be a lot like Ferris Buehler’s Day Off without the teen angst! A great deal of sightseeing, dancing and celebrating of life, topped off by an exciting and romantic evening of a show, an amazing dinner, more dancing and a carriage ride around Fountain Square. 

One positive of having a chronic illness/disability is…

It’s made me take responsibility for my mental health and taught me what real support looks like, allowing me to walk away from all the toxic people in my life.

One final thing I want people to know is: 

No matter how bad things get, there’s always the possibility that things will get better, as long as you keep fighting. I spent years so inundated by symptoms and disabled by my health that I could no longer see the point of living. I nearly took my own life.

I’m so glad I managed to pull myself out of that deep depression, because it turns out I have quite a lot of life left in me. How did I succeed? I started saying yes to anything that I thought could help, searching exhaustively for solutions. It worked! I found my correct diagnoses and ways to treat my pain and symptoms that affords me a life I can live with.

Now I also have some joy and a sense of my own strength. I may not have beat chronic illness, but I am doing a pretty good job of not letting it defeat me and helping others to also find things to help them.

My links are:

https://zebrapit.com a health and wellness site for spoonies and zebras

https://mykiewritesit.blog a site to display my writing services, poetry and short stories, and discuss writing and blogging strategies and techniques.

10 Mental Health Habits to Try (That Really Work)

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I am featuring another guest post from my friends at MadebyHemp.com. This article first appeared on their website.

2018 was the year we saw a strong surge of mental health awareness. The public’s focus on health broadened to also include taking care of one’s mental and emotional health. People have finally realized that one of the keys to maintaining a healthy body is to have a healthy mind.

Throughout 2019, mental health awareness will continue to be one of the bigger focuses on overall well being. Learning a few habits that will promote and improve your mental health will be a great start to your fabulous year.

1. Exercise

The secret to a sound body is a sound mind. But it could also work both ways. The secret to a sound mind is a sound body. It might not work for everybody, but for a majority of able-bodied people, a great way to boost endorphins is to go out and move. Find an exercise that you love. You don’t need to do what everyone else is doing. Some people prefer lifting weights, some like yoga, some even run marathons. Find that one exercise you want to stick with and run with it.

10 Mental Health Habits to Try This 2019

2. Gratefulness

Being thankful for the things you have instead of focusing on the things you don’t is a good way of bringing positive energy into your life. It will, more importantly, make you realize you are lucky to have the things you do. Practicing the habit of being grateful will help you become a more positive person.

3. Be kind

Be the person you wish other people would be to you. Make someone’s day by smiling at them, or helping them carry a heavy load, or even just opening the door for someone who has their hands full. A bit of kindness paid forward will cultivate a world of kindness. It doesn’t take much to make others smile.

4. Sleep

Get enough sleep. Sleep can do wonders for a tired mind and body. Don’t overdo it though. Get the right amount of sleep in order to feel rested and ready to tackle your day, every day. Put your screen away close to bedtime and concentrate on relaxing. Give your body and mind the time to recover and recuperate.

10 Mental Health Habits to Try This 2019 - Sleep

5. Hang out with friends

Socialize. Even the most introverted person has someone they prefer to hang around with. It does wonderful things to your soul to share your time with the people that matter.

6. Chocolate

Better yet, try Therapeutic Chocolate with Cannabidiol (CBD) oil.  Cannabinoids are non-psychoactive and can reduce anxiety. If you are looking to incorporate CBD into your diet, but is not very much of a fan of its earthy taste, chocolate is the way to go. Cannabinoids are found to keep the body in neutral state, and support the functions of the brain, as well as the central and peripheral nervous system. Get your chocolate fix for the day, and get CBD’s benefits while you’re at it.

7.  Laugh

When they said laughter is the best medicine, they were not kidding. Laughter helps ease stress and anxiety. Hang out with a funny friend, or watch a comedy show. Or maybe learn a few jokes and share them with your friends. Laughter is one of those things that multiply when shared.

8. Eat well

A few desserts won’t hurt you any but for the most part, feed your body the things it should be fed. Eat a healthy and balanced diet. This will ensure your body will feel healthy and will give you less things to stress or worry about. Avoid things that will harm your body like smoking or excessive drinking.

10 Mental Health Habits to Try This 2019 - Eat Well

9. Love yourself

Tell yourself something nice every day. Most people are generous with giving away compliments to others but are stingy when it comes to themselves. Start your day by giving yourself a sincere compliment. It could be something simple like “oh my skin looks very nice today”. Or “I do make an amazing omelet.” And develop this into a daily habit. Because loving yourself will allow you to love others more freely.

10. Meditate

Give your mind a chance to empty itself out of the negative energy that is pervasive in the world. Give your mind the space to breathe and relax. And as you relax your mind, you relax your body. Meditation is a great way to connect your mind and your body into one plane. It is a good way to relax and to relieve yourself of any stress that you may have. Meditation also complements therapy.

Remember,

There Is Always Hope

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

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

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

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Image by TeroVesalainen from Pixabay

Education

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

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

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

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

Compassion

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

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

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

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Image by Gerd Altmann from Pixabay

Volunteering

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

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

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

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

 

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Image by John Hain from Pixabay

Helping Myself

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

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

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

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

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

There Is Always Hope

10 Things I’ve Learned About Chronic Pain

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

The author showing various pictures of her face in pain

My many faces of pain

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

1. THERE IS ALWAYS HOPE

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

2. A GOOD DOCTOR IS TO BE TREASURED

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

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

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

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

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

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

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

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

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

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

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

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

8. SLEEP IS A VERY GOOD THING

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

9. WE ARE ALL WARRIORS

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

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

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

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

CONCLUSION

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

There is always hope

Gastroparesis Is A Slow Go

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

feat-gastroparesis

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

Some of the causes for Gastroparesis include:

There are many symptoms of gastroparesis, including:

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

Some of the complications of gastroparesis include:

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

HOW DO THEY TEST FOR GASTROPARESIS

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

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

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

DAY OF TEST

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

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

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

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

There Is Always Hope

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

A New Piece Published!

Wow!
I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.
Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!
Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!
I’m so excited and I’m really damn proud of myself!
https://www.painnewsnetwork.org/stories/2018/8/8/grieving-a-former-life
There is always hope!

Conditionally Speaking…

Welcome back!

I’ve talked specifically about a few of the conditions I live with, but I thought today I’d give you an overview of the 13 different health issues that make up who I am. Some are serious, some are just an inconvenience, but all of them are a part of me. Here’s the list:

  • 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
  • High Cholesterol
  • Brachydactyly Type E
  • Raynaud’s Disease
  • Hypothyroidism
  • Vulvar Intraepithelial Neoplasia 3 (VIN 3) – now healed

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. 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. Of course, I have weird fingers anyway…which leads to another thing on my list.

Brachydactyly.  Pronounced Brackee Dack Til ee, there are several types of this disorder and I have Type E.  It’s described as such, from Wikipedia:

Brachydactyly (Greek βραχύς = “short” plus δάκτυλος = “finger”), is a medical term which literally means “shortness of the fingers and toes” (digits). The shortness is relative to the length of other long bones and other parts of the body. Brachydactyly is an inherited, usually dominant trait. It most often occurs as an isolated dysmelia, but can also occur with other anomalies as part of many congenital syndromes.
Brachydactyly.svg
I was born missing the bone as shown in Type E, but it wasn’t apparent until I was about 5 or 6 years old and the ring fingers on both hands stopped “growing”. Each one is about a half inch longer than my pinkie, and that’s it. When I make a fist, there is no knuckle formation either.  You can see the flatness in the photo beside my hand.


People always think my ring finger is swollen, but it’s actually the extra skin that would have covered the finger if it had grown to full length. My feet are the same way as well:
PamToes1
I can’t actually bend any of my toes individually – if I try to bend them, they all bend at the same time.  The second and third toe are mildly webbed on each foot and then you can see how severely affected the “ring toe” is affected. That’s because of the missing bone in the foot, just like the ring finger. The pinkie toe is basically normal. Each foot is the same.

Now because this is a genetic condition, I was quite interested to see if my kids or grandkids would have the same thing, but no…I’m the only one who has presented with it. I was adopted at birth and always wondered if anyone in my birth family had it too. I was able to find my birth mom approximately 15 years ago, and again, I am the only one on her side of the family with this condition. She doesn’t know about my birth Father’s side, but I believe I may have tracked down a family member for him and I’m just waiting to see if she contacts me. His name is Arvay Bernath and he was born and raised in Nanoose Bay, BC on Vancouver Island. He dated my mom Bonnie Rebecca Anderson from Parksville, BC on the Island and they were engaged when she became pregnant with me. Her dad didn’t approve and so they broke up and I was put up for adoption. Arvay appears to have passed away in 1997, but from information, I found on MyHeritage.com there is a relative named Lily Bernath who started a search page. I left her my contact info, but she hadn’t been on the page since 2017, so who knows if she’ll get my info or not. At any rate, he or his family may or may not have Brachydactyly too, or I could just be an anomaly.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis, which means (again according to Wikipedia):

Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.

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.

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 Dr Leong 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 and exercise a bit more.

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!!! Dr Leong 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!!

The other few things on the list are all fairly minor. 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. The High Cholesterol is managed easily with medication (too much ice cream!). The Reynauds is something that happens when my fingers and toes are exposed to the cold…they go bone white and lose sensation, so I have to be careful when getting things from the freezer or being in cooler windy weather, etc.

So there you have it. Thirteen separate conditions with one healed and Chronic Pain is a part of 7 of them. 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. I’m going to do a separate blog post about my Fibromyalgia because that’s been my predominant pain for so many years, but suffice 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 wish our Government would get on board with this. I know things are happening, and we’re getting closer, but it’s not well within reach for everyone.

Thanks for indulging me and letting me share more about me with you. If you have any questions or comments, please feel free to leave them here. And remember…

There is always hope!

Fibromyalgia and Online Support Groups

Welcome Back!

I belong to an online Fibromyalgia Support Group. I spend so much time on the computer that it made sense to me to find a support group online as well. It’s run by a lady named Catherine and has members from around the world – Australia, England, Canada, and the USA.

It’s a super supportive atmosphere and the one thing we are very clear about is that none of us are doctors and we are not there to dispense medical advice. We can talk about what does and doesn’t work for us, and our own medical experiences, but we can’t diagnose you based on YOUR symptoms, as Fibromyalgia can have SO many symptoms, it would be impossible to try.
~~~~~
One of the so-called “tests” used to determine if you have Fibro or not is the 18 Tender Points as shown here:

FibroSymptoms2So you can see why Support Groups are so necessary when you live with Fibro, or really any disease that causes Chronic Pain, such as Osteoarthritis, Rheumatoid Arthritis, Lupus, Ehlers Danlos Syndrome, MS and more.
~~~~~
Well, I joined a new Fibro support group a few days ago, and just had the most interesting experience. Yesterday, the Leader of the group “diagnosed” a member with a symptom she was experiencing (bloating and constipation) and told her she had “Leaky Gut”. I suggested that she shouldn’t diagnose, and what if it was something else, such as Gastroparesis?

My goodness, did I ever get a pissy response!!!! I took screenshots (which I won’t post here), but I ended up just leaving the group. I was told that this woman has 25 years of living with Fibro, she’s done years of research with top doctors, and she knows what she’s talking about. Apparently, this woman is determined that the only way to resolve Fibro is with Bovine Colostrum and a Chiropractor. Now, I’m willing to try the Bovine Colostrum to see if it helps, but you DON’T diagnose someone definitively, EVER. It’s even in her rules, which I quoted to her, which made her even angrier!!

And not only that, how dare I suggest Gastroparesis and the radioactive tracer test that would diagnose that because that would make this lady’s “Leaky Gut” even worse. FACEPALM (yes, she really put the Face Palm Emoji in there).

And not only THAT, how dare I tell her what to do in her OWN GROUP. She’s never been angry before, I’m the first one in the whole ten months to upset her, blah blah blah blah blah blah (yes, I am that talented!!)

So, I told her I was leaving the group because I obviously couldn’t state my opinion without being attacked, she couldn’t follow her own rules, and I don’t need that kind of energy in my life. I reiterated that it’s okay to suggest possibilities, yes, but you never tell a person that what you suspect they have IS what they have. That’s just being irresponsible. Then I called her an @ss and left. Oops!!

There is always hope.