When pain prevents progress, pursue purpose with passion
How I'm advocating for the sarcoidosis, arthritis communities this month
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For the past few days, or weeks — or is it months? — it feels like I’ve been hurting more and more. It’s easy to lose track of time when one day lost to pain blends into the next. It’s difficult for me to explain, so I can only imagine how hard it is for others to understand.
What’s especially frustrating is when my team and I create a plan to address it, but then I can’t follow through. It sounds like I’m just making excuses. I’ve had to cancel physical therapy twice in as many weeks because I wasn’t feeling well. I couldn’t even do the at-home exercises because I was hurting too much.
I’ve been in this predicament before. On more than one occasion, I was discharged from physical therapy because I missed too many sessions. Other times, I decided to discontinue it myself because I felt bad about canceling so often (and I was worried they would just discharge me anyway). I really want to stick with it this time, but my body is not cooperating.
The problem is, well, that there’s more than one problem.
Currently, my physical therapy is designed to address arthritis pain in my knee, but even that isn’t simple. It starts with degenerative osteoarthritis in my knee, likely brought on by a combination of weight gain and bone loss resulting from 10 years on steroids. But inflammation from sarcoidosis and rheumatoid arthritis adds swelling and stiffness to the mix. As if that weren’t enough, my knee is hypermobile, so when I straighten my leg, it goes too far, and the kneecap locks into place.
My body seems to call out like a late-night infomercial, “But wait — there’s more!” Many of the exercises that would help my knee are hindered by pain and tightness in my hip flexor tendon that have lingered since my hip replacement three years ago. And severe fatigue from sarcoidosis and fibromyalgia can make me feel like my body is made of lead and I haven’t slept for a month.
All of this makes the thought of exercise — even therapeutic physical therapy — daunting.
I know I’m not alone in this, though: A 2017 study revealed that a majority of people with sarcoidosis experience sarcoid arthritis. Beyond that, an estimated 60 million Americans live with some form of arthritis, many with more than one. So while my ability to improve my physical well-being is often limited, I can still ease my mind by serving a purpose and supporting my community. Fortunately, as May is Arthritis Awareness Month, there are plenty of opportunities to do just that.
This month’s advocacy adventures
Next weekend, my family will once again volunteer at the Arthritis Foundation’s Walk to Cure Arthritis. My “Buttahflies” team includes my mom, who is recovering from her second knee replacement, and my mother-in-law, who is still trying nonsurgical treatments for hers. We can’t literally walk the Walk, but we can talk the talk, sharing information from the mission table. My husband, who does not have arthritis, will likely walk with a friend to support us all.
The following week, I’ll be joining the virtual activities of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)’ World AiArthritis Day. This 47-hour celebration (covering May 20 across all time zones) features an auto theme to “drive awareness” about autoimmune and autoinflammatory diseases with arthritis as a primary symptom.
Organizations, advocates, and individuals around the world can get involved by posting on social media with this year’s theme, #MyAiArthritisDisease. This year, I’m excited to join a panel with other AiArthritis advocates talking about our health journeys and offering advice for other patients.
Another meaningful way to get involved during Arthritis Awareness Month (and throughout the year) is to advocate for issues that matter most to people with arthritis, sarcoidosis, and other chronic illnesses. Sharing our stories when asking legislators to support funding for research or access to care makes it more personal. We are not statistics; we are people — their constituents — with faces, families, and lives that matter.
When I’m not sitting at the Arthritis Foundation table, speaking on the AiArthritis livestream, or emailing my members of Congress, I’m keeping myself busy creating and scheduling awareness posts for social media. Throughout the month, I’ll be sharing information, highlighting other patients and organizations, and telling my own story to help educate others.
And when I have the energy, I’ll get back to my physical therapy exercises. If I can’t do the whole routine, perhaps I can break it up throughout the day, or even do a few moves today and the rest tomorrow. What matters is that we do something — what we can, when we can, how we can — and practice self-compassion the rest of the time.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
Mel
Oh yes, absolutely.
The challenges that have to be faced are tremulous.
I have good and bad days. It's so random, but apparently it's stress and I was meditating for a while for hours and that helped so much.
But, life doesn't offer that opportunity for most. But, I also gave up after several grief incidents.
I know that it happens within. It takes many hours to reflect and go within. But, no one has time for that in the modern world or else you would be homeless.
I just know, we all feel pain. And, it sucks.
But at least we all have each other to understand, we aren't alone and our friends and family, as much as they want to understand. They are not in our bodies.
We may look and "feel" fine.
It's a whole other story.
Feels nice to not feel alone, though we all are in our bodies.
Much love.
Thanks for always writing. You bring me joy with how you can write about your experience.
Much better than mine.
Take care.
Thanks kindly for what you do.
Believe me, you inspire and help .
Lots of love!
🦋 Kerry Wong
Thank you so much for your kind words, Mel!
Yes, it's not always easy to take the time we need to relax, reflect, and soothe our minds ... but I'm so glad you've been able to do it and it's been helpful! And even more yes, it means so much to know that we are not alone. When we can find each other and know that someone else gets it, that can be just the meditation we need!
🦋
Kathy Lindsey
Thank you so much for sharing It DOES help to hear the stories of others & know we are not alone. I am always taken aback by cruel comments from complete strangers though. Can’t seem to get past those little barbs
🦋 Kerry Wong
Oh, Kathy, I'm so sorry you've had to endure harsh words from strangers (what nerve they have!), but glad you are able to find comfort in the kindness of people in our community, knowing that we are in this together. Stay strong!
🦋
Kathy Lindsey
Thank you so much for sharing It DOES help to hear the stories of others & know we are not alone. I am always taken aback by cruel comments from complete strangers though. Can’t seem to get past those little barbs
Bill Chiles
Since I've been getting KRYSTEXXA injections, and they gave me colchicine for gout flare ups. My pain levels have dropped dramatically. I have cardio and pulmonary sarcoid. I was getting lumps all over my body. My joints were filling up with fluids.
My uric acid at time was off the charts, so my nephrologist got me approved for injections and gave me the oral med for flare ups.
I have neuropathy in my hands and feet bad, my legs and arms lightly.
But since getting this combo of drugs plus pregablin and cellcept my pain level has gone from a 10 to about a 1.
I do take other heart and BP meds, although it was this combo that helped. I have bad sciatica, but that's another problem, but I hate pain meds so I tolerate that.
I all the bump and build ups went away after about 8 months of treatment and now I feel pretty good over all compared to before KRYSTEXXA. When I had to have help just to get out of a chair. It helps to have a teenage man child.
Good luck to everyone I'm guessing anything is worth a try. Have your doctor's check your uric acid levels.
🦋 Kerry Wong
Thank you for sharing your story and suggestions, Bill. It sounds like an awful ordeal! I'm so glad they were able to find the right combination to make such a big difference for you. Always worth asking the docs if there is something else to try!
🦋
Sherri
All I can say is this article was so well timed for me to read. I felt like I was reading my own thoughts and struggles. It came at a time I so needed to know someone else understood my life challenges. Thank you for doing what you are doing. It helped me today. Thank you. 🦋
🦋 Kerry Wong
Sherri, you've made my day! I'm always hoping it can reach someone who needs it, and it warms my heart that I could do that for you. I see you, I understand you, and we will be ok!
🦋
Elize
Hi,
3 years ago I felt like you, Sick and tired of been sick and tired.
After praying I found out that if I elimited my carbs and sugar the pain was not so severe. Inflamation is the beast of Sarcoidosis. I can now jump out of bed and walk with no pain. my left leg is still a bit stiff, but im working on that. No breathing through bubbles, I can take deep breaths. Happy, Happy I am. My swolen feet that ached is now so much better and I have lost weight. Puffy no more. Red face gone. skinny fingers, no stifness. Praise my Lord and saviour who sent me on a journey to get my life back.
Give it a try, it might work for you.
Blessings,
Elize.
🦋 Kerry Wong
Thanks for sharing, Elize. An anti-inflammatory diet can be helpful for many ... unfortunately, it didn't do it for me. But that's part of being a "snowflake" disease: it affects us all differently. I'm so glad that was helpful for you! 🦋
Sandy
Thank you for sharing your story. It made me feel like there are others out there who know about my struggles with my daily pain. Lately, I feel like my team thinks it's made up. The doctor continues to say that my markers are not that bad for pain, but then states that my muscles are most likely deteriorating. My sarcoidosis is in my head and in my extremities. At times, I go to bed crying and wake up crying. I have been on steroids for over 12 years now, and my orthopedic says that is most likely why I am having increasing brain fog. I have typed since my first job, which was forty-something years ago. Since my last flare-up, I cannot remember where my keys are on the keyboard. Many people I have talked to ask me why I am not in remission.
For 12 years, I have only been in remission (as they call it twice). I flared up on my skin so badly that it looked like red pimple-like dots completely over my body, and the ER NP said that she felt I was exaggerating my pain. My daughter asked her if she could look at her clearly, and she dismissed it and discharged me. I went home and felt so bad after the swelling grew so much that it smarted when connecting the dots. My kids took me to another hospital, where I was kept. I continue to get lumps/bumps all over. Mainly my hands and feet, but my hands typically break through my skin, so I had to deal with infections. Most recently, my skin flared, causing my thumb to swell and leading to trigger finger in my right thumb and index finger.
I am reaching out to groups now because I cannot remain silent any longer. I have been dismissed too many times due to others not knowing how to deal with a sarcoidosis patient or others who are flat-out rude with their words. I most recently had to tell the disability case worker to stop treating me as if I were garbage just because you do not have knowledge of this condition. I deserve respect just as well as others who feel bad. I am trying to reach out to others who know how it feels to smile as if nothing is wrong, but have an ongoing waterfall of tears behind that smile. I signed up for a
support group in my area so that I can talk it out.
I am grateful to you for this article. I am grateful to all of you.
🦋 Kerry Wong
Oh, Sandy, thank you so much for sharing your story, though I'm so sorry for all you've had to go through. The gaslighting is terrible, and makes everything worse, both physically (as they don't address our symptoms) and emotionally. You are 100% correct: you (and all of us) deserve respect. Thank you for speaking out. You are not alone in this, and you give others strength to speak up for themselves, as well. 🦋