So… I wrote this post updating about my fantastic Rheumatology appointment while I was under the covers, shivering and shaking with fever and chills, optimistically (naively) hoping that the fever was a fluke and not the prodrome of an arthritis flare.
I was wrong. The day after receiving the “all clear, your joints are healthy, you can try going off your meds,” I woke up nearly unable to walk.
I hoped that this was just severe morning stiffness, and that it would improve as the day wore on.
My joints turned the 2-minute walk from class to lab into a 10 minute epic journey which concluded with Hannah doubled over in tears in a bathroom stall… each step felt like someone was stabbing every joint in my body. I pulled myself together (mainly because my chest was so inflamed that breathing deeply to cry hurt), but lab was a bit of a fail. My hands were swollen and shaky so that I could barely grip my dissection tools, and the simplest of motions sent pain radiating up my wrist to my elbow and shoulder as if I’d been lifting hundreds of pounds. It was a long day, and I was feverish again by the end of it, and spent another night curled under my favorite soft fuzzy blanket, bundled up in sweats and socks, despite the June heat. Although I was exhausted, I couldn’t get comfortable enough to fall asleep.
The upside of tossing and turning all night is that I didn’t have a chance to get as stiff, so Friday morning, I felt a bit more limber, and got up hoping, again, that the previous day had just been a fluke. I made it to class, but my joints were throbbing. It took me so long to shuffle from class to lab that everyone had started by the time I arrived. I looked so bad that my partners encouraged me to go home, and I rather agreed. I knew I was in too much pain to learn anything.
Although I had parked very close (in my handicapped spot), it took me nothing short of a ridiculous 35 minutes to limp to my car. I had to stop several times and sort of “gather my strength.” My joints were so stiff and weak that they kept giving out on me and I could barely hobble along. I tried leaning on the raised flowerbeds for support, but the joints of my arms were also weak and inflamed and collapsed instead of holding me up! My denial melted away with my tears as I decided that this wasn’t a fluke, it was a flare, and I should call the good doctor because I couldn’t walk.
I was very sick and in a lot of pain, but primarily, I was terrified! It is just so disconcerting to literally be fine one day and wake up unable to walk the next. Thoughts raced through my head: How was I going to get back to school? Forget going to school; how was I going to get to my car? Once I got in the house and crawled into bed, I wondered how I was going to make it to the bathroom. How long was this flare-up going to last? I literally couldn’t walk; I was going to need to get a wheelchair or something to be able to get around – how would that work? What was I going to do?
I thought of my friends who have MS, and of the people with MS I worked with when I interned at the National MS Society. They live with this sort of uncertainty every day – MS is characterized by sudden and random losses of ability to move or control various body parts and senses. Suddenly, I realized just how brave they are… and I also realized how much I take for granted! A verse popped into my head (a bit out of context): “In Him we live and move and have our being” – and I considered how we truly depend on God to MOVE. We assume that we will be able to scratch where it itches and that our legs will support us when we stand and that our hands will be able to grasp the knob, turn it, and pull to open the door… but even all those things we do without even thinking about – they are a gift from God, and just like that, they can disappear.
I called my mom (sometimes you just need to talk to your mom) and left a message for JP Dr, took a round of pain meds, and put myself to bed. I wasn’t sure I’d hear from the doctor – by this time, it was close to noon on Friday, and they usually go home for the week at lunchtime. But as usual, God was so much more gracious to me than I deserve…
The wonderful JP Dr. called me from home that evening. We were both so disappointed, as just two days earlier, everything had looked so great that we were discussing a trial of going off one of my shots. Obviously, this plan got put on hold and I will stay on the shots…we doubled my steroids (another disappointment, as after months of work, I had finally tapered to the lowest dosage I’d been on in over a year). JP Dr. told me to be on the alert for any other symptoms – if I developed a cough, higher fever, if my GI issues flared up, anything at all, I was to go straight to the hospital.
Thankfully, I didn’t need to go to the hospital; instead, I spent the weekend in bed watching Netflix while doing my best Candy Cane impression: skin red and white from warm baths alternating with ice packs, scent compliments of IcyHot and SalonPas patches.
Thankfully, miraculously, graciously… the steroids kicked in very quickly. By Monday, I was able to sort of walk again – everyone was asking me why I was walking so funny, but my legs were actually holding me up, and the swelling was not as severe, and the heat wasn’t radiating from my joints like it had been. And thankfully, my joints continued to improve each day until I was able to drop off the oral anti-inflammatory meds (I am only allowed to take them very judiciously, as they are very hard on the stomach, and my tummy doesn’t really need any excuse to misbehave) and begin tapering on the steroids after 8 or 9 days.
Even though this story has a happy ending - it was such a short mini-flare up - it was still scary. It reminded me just how bad my joints can get -- I am thankful that they had been doing so well that I had pretty much forgotten what a bad flare up is like. It also reminded me to not take my strength and mobility for granted! It is so humbling to realize that God can take it all away overnight, should He choose. It reminded me to pray for my fellow autoimmune buddies, who live with this sort of uncertainty daily. And finally, it reminded me that my circumstances don't and shouldn't dictate my attitude and response. God isn't good only when I'm healthy or when I can walk. He was gracious to allow this flare up to be so short and to respond so quickly to medication, but I also see His grace in allowing my to suffer and be sick. God's character doesn't change just because my circumstances change. He is good when I'm doing great and He's good when I'm smelling of peppermint, sick and curled up watching "Call the Midwife!" under my fuzzy blanket.