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Despite My Progress, I Always Fear My Sarcoidosis Will Worsen


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A graphic depicting a butterfly winding through the sky.

The other day, I was sitting on the couch recuperating from my shower. (Yes, for many people with sarcoidosis, a shower is an Olympic event that requires planning, preparation, and recovery — but that’s a story for another day.)

Anyway, I was on the couch trying to relax when, suddenly, my left hand started to hurt. Each knuckle quickly stiffened. I couldn’t close my hand into a fist, but I couldn’t open it all the way, either. And the pain was intense.

Within seconds, my left knee started hurting just as much, with a sharp pressure that left me feeling like my kneecap was being crushed. It spread up my thigh, shooting pins and needles all the way to my hip. No matter how I shifted in my seat, I couldn’t get into a less painful position. Then my right hand started, just like the left. And I got scared.

I can’t go back to that.

Like many people with sarcoidosis, I’ve gotten used to living with chronic pain. It may vary in location, type, and intensity, but it’s always there. I do my best to manage it with a variety of treatments, but nothing takes it away completely.

Still, that becomes a kind of baseline pain: I know what it is, and I can recognize if a new pain denotes a problem that needs to be addressed. When I fell a few weeks ago, I knew the pain was different and required attention. As it turned out, I’d broken my foot and sprained my ankle. I saw the orthopedist, got my boot and walker, and we’re working on my recovery.

But that hand/knee/thigh/hip/hand pain was different. It was much more severe than the pain I’m used to. It immediately took me back to 2015, and I began to panic.

I can’t go back to that.

In 2015, I was in the worst shape of my life. I hadn’t yet been diagnosed with sarcoidosis, but I’d spent four years with rotating misdiagnoses and treatments that didn’t help. That included four years on steroids, which led to a 100-pound weight gain, Cushing syndrome, and many other side effects.

At the time, I had to weigh the damage being done against the benefits I was receiving, and ultimately, I told my rheumatologist I wanted to stop the steroids. We spent most of the year weaning me off, and all my symptoms just got worse.

Fear\ Sarcoidosis News \ Photo of a left hand, swollen and inflamed

Kerry’s swollen and inflamed hand in 2015. (Courtesy Kerry Wong)

I had severe headaches every day. My neck was stiff and hurting. My skin broke out in painful rashes. My arms, legs, hands, feet, hips, and back were all swollen, stiff, and excruciating. I could barely move, and when I did, I screamed in agony. I couldn’t open a pill bottle or pour myself a drink. I couldn’t stand from a seated position. I couldn’t type on my computer keyboard or even hold my phone.

I was helpless. I felt useless. All I could do day and night was suffer. At 40 years old, I needed my mom to take care of me when my husband went to work. This was not a life I wanted to live.

Fear \ Sarcoidosis News \ Photo shows a pair of very swollen feet

Kerry’s swollen feet and ankles in 2015. (Courtesy Kerry Wong)

Fortunately, my doctor noticed something in my bloodwork during that time, which led me to a pulmonologist for a chest X-ray and a dermatologist for a skin biopsy. After that, I was finally diagnosed with sarcoidosis. I started new treatments and immediately began to improve. I’m still working with my doctors to manage my symptoms, but they are at least manageable now.

Still, there’s always that fear.

I can’t go back to that.

Since I was properly diagnosed and treated, I’ve made a world of progress. The swelling is mostly under control, the rashes are mostly gone, I’m able to move and walk and carry things in my hands without difficulty. For the most part, I’ve gotten to the point where I can live with my sarcoidosis. It may not be the life I’d imagined pre-illness, but it’s beyond what I’d imagined possible in 2015.

Regardless of the progress I’ve made, or perhaps because of it, I always worry about returning to that unbearable state. If my insurance stops covering my medication, I’ll go back to that. If the medication stops working, I’ll go back to that. It can happen for any reason, or no reason at all. That fear lives in the back of my mind, and it can send me spinning or paralyze me with anxiety in an instant.

I can’t go back to that.

I may always live with this fear, but at least now that fear is tempered — outweighed, really — by my gratitude for how far I have come.


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.

The post Despite My Progress, I Always Fear My Sarcoidosis Will Worsen appeared first on Sarcoidosis News.

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