When people ask for my idea of a horror movie that scares the shit out of me, I’ll always say, “Still Alice.” All the monsters and slashers and serial killers in the world don’t hold a candle to a drama about Julianne Moore slowly deteriorating with early-onset Alzheimer’s disease. That shit will keep me up for nights on end, my white eyes peering into the dark void.
I’ve always had a deep fear of chronic, degenerative and terminal diseases. I fear for my quality of life, but, like most people, I don’t want to be a burden on the people I love. I have seen amazing caregivers treat ill individuals with unimaginable degrees of love and dignity. I’ve also seen the private frustrations and breaking points. When my dad was terminally ill, I never worried about his death as much as I worried about him lingering ad infinitum in a state of physical pain and mental confusion.
Earlier this month, while I was in Montreal, 6 of my joints flared overnight. I was like a 40 year-old linebacker getting out of bed the next morning. I have no explanation and likely never will. I was lucky to get in with my PCP and then a rheumatologist. Three days into an 8-day course of steroids, I was feeling relatively normal.
The preliminary diagnosis was Lofgren’s Syndrome, an autoimmune disorder that generally resolves in 6-24 months. The trouble is, there’s no test to establish that for sure. Sure, I had three rounds of bloodwork and two rounds of x-rays, and we were able to say what it wasn’t. But here we are, unsure what it is. We have, at best, a guess.
We were hoping when the steroids ran out, the disease would have run its course. Not so. On day 24, a week after my last dose of prednisone, I flared right back up. I cried. Back on the steroids I went.
Meanwhile, I’ve learned I have a bad reaction to ibuprofen. I never did in the past but now, when I need it most, it betrays me.
I feel shaky but I don’t shake. Chills. Hot flashes. Fatigue. Not a lot of pain, but definitely restricted movement. No appetite. Huge appetite. Is that the result of the disease? The steroids? The ibuprofen still making me batty? The weather?
From hour to hour, I can’t say how I am or how I’ll be, and it sucks because just one month ago I was walking up and down the boardwalk in Ocean City, Maryland, eating fudge without a care in the world.
And what happens next? The steroid will make me feel better in a few days. But, sooner or later, it will run out, too. Will I be okay? If not, how will I manage this thing?
How long will I have to?
I think about the old ladies who work at mini marts and Waffle Houses, crippled with rheumatoid arthritis, who show up to work every morning and make the coffee, anyway. Pain? Take two Excedrin. Doctor? Too expensive. Retirement? Can’t afford it.
And then me. Fatigued. Wanting to stay home. Not anywhere as labile and under good care. Anxious about the course of my disease, when it will end, and what to do until then.
I’m sort of failing the resilience test. I admit it. I’m just not very good with the unknown, especially in matters of health. I want a good quality of life, and I don’t want to be a burden, but there are no promises. The fact scared me long before I actually had a health issue, and it’s scaring me now.
If nothing else, it’s given me empathy for people who suffer with no answers, or suffer in pain, and appreciation for people who suffer but remain optimistic and happy. How do they do it?
Anyway, it’s time for a nap.
This is scary. My wife and I (but mostly her) have been taking care of a family member with pretty severe early Parkinson's. It's been really scary. What's more, she had an auto-immune disease a dozen-ish years ago that she's still dealing with the effects of. There's so much to be afraid of. I hope you can find some pain remedy that 1) works and 2) you're comfortable taking. I had to stop taking ibuprofen several years ago, because I could feel it burn all the way through every loop and whorl of my digestive tract. What IS that stuff?
You’ll kick it! Also curious if you’ve met with and infectious disease practitioner? Sarcoidosis can be brought on by bacterium or fungi. Wondering if you brought an uninvited guest home from one of your trips?
I’ve been dealing with unexplained joint pain, fluid retention, and joint-adjacent tendon issues. It’s no fun but it’ll be figured out just like yours.