When My Greatest Fears About My Pain Became My Temporary Reality

Within the last month, my deepest, afraid-to-say-out-loud fears came true.

Temporarily.

For the past 10 years, I’ve lived with undifferentiated connective tissue disease, a rare autoimmune disease. And for almost a year now, my rheumatologist and neurologist had been recommending a muscle biopsy as another way of looking at my leg, inside my leg, to try and determine what was causing the increasing pain and weakness I have been experiencing.

This pain and weakness wasn’t new. The difference now was the intensity and location of my pain — in my left thigh — when generally it’s always been limited to my left calf. Were the effects of my illness spreading? Was something else going on? Other tests were done, but a muscle biopsy in my left calf, was supposed to be the last piece of the puzzle my doctors needed to answer these questions.

This would’t be my first time. My first muscle biopsy was nine years ago. It was time for a repeat, a way for doctors to compare the results.

I hesitated and stalled for quite a while, afraid to put myself through the process and recovery. And then, right after I had agreed to the procedure, heavily influenced by my doctors who said we we were at a “standstill,” and they couldn’t help me any more until I had the biopsy — COVID happened.

Originally, the biopsy was supposed to happen sometime in April. On a weekday, while my son was at school. I’d take a few days to recover and then life would carry on as usual, hopefully with some new insights which would provide me some less painful days.

But if 2020 has taught us anything, it’s that not much is certain. Life can change, quickly, drastically and without warning.

I had the biopsy in mid-September. And while the surgeon told me the procedure went well, and everything went as expected on his end, I can’t say the same for me. My secret fears went from being figments of my imagination to becoming my daily reality.

Our two-story home had become impossible for me to navigate independently. For days after the biopsy, I spent hours on one floor of the house, limiting my trips up and down the stairs. For days, I couldn’t climb the 15 stairs to our bedrooms without bursting into tears. Each step hurt. Each step was a struggle. And it scared me. I couldn’t help but wonder if the pain would ever ease. Would my muscle ever recover? (Yes.) Would we be forced to move? (No, at least not now.)

The simplest things weren’t so simple anymore. Using the bathroom required a slow hobble into the restroom and then a very ungraceful plop down onto the toilet. Getting up required me grabbing onto the nearest towel bar and sink countertop for support. Again, I wondered if my body was giving me a hint of things to come. Would I need assistive devices in my bathroom? (Not now, at least.) I couldn’t shower for several days, although the surgeon had told me I only needed to skip one day’s shower. I didn’t shower, because I physically couldn’t. I couldn’t lift my leg high enough to step into our tub and take a shower. Once I overcame that obstacle, showers became scary things I had to do. Nothing relaxing about it. Get in safely, get out safely. And with my husband offering his help as I stepped into and out of the tub.

I felt betrayed by my body. A few days after the biopsy, I noticed my left leg was swollen — from knee to foot. Swelling that increased as the day went on. Swelling that I knew was not right. An ultrasound confirmed a blood clot in my lower leg had caused the swelling.

Was my walking, my standing, my sitting more difficult because of my usual pain? My biopsy-related pain? My blood clot-related-swelling? Who knows? All I knew was my body was weak. Vulnerable. And dependent on others. No longer could I walk the two blocks to my local Coffee Bean for my favorite blended mocha. I couldn’t walk that far, and I didn’t trust my unsteady steps to get me safely across a busy intersection.

After the biopsy, my “invisible disability” wasn’t invisible any more. I didn’t walk. I staggered. I limped. I shuffled my feet. I struggled to move one foot after the other. And I did it while holding onto my husband, or my son, or both.

And perhaps the worst part?

The biopsy results were “inconclusive,” “confusing,” “unexpected.” Without going into the details here, I’ll just tell you I’m being referred to another neurologist for another perspective, another set of eyes.

But that brings me to my biggest fear.

I’m waiting for the terrible news. If what I have, if what is going on in my body, is not easily or readily identified, then it’s not easily or readily treated. And if that’s the case, in my mind, it must be something really, really bad. Even though I’m not quite sure what “really, really bad” looks like. Except that it looks even worse than it felt in the days and weeks after this recent biopsy.

And if that happens, I fear it won’t be temporary.