When pain prevents progress, pursue purpose with passion

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.

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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.