It came back.
I don’t know exactly when and I don’t know why.
But the moment I felt it, my heart sunk. My right foot felt like it would crack in half. When I got up from a chair, jolts of sharp pain struck right above my kneecaps. My toes and hands stiffened and swelled; my fingers were basically fingerling potatoes.
Sigh. My rheumatoid arthritis (RA) was back — with a vengeance. A flare so intense, the likes of which I hadn’t seen for years and years. I couldn’t believe it. I’d just had what I felt was almost remission. After neck surgery a few months ago, my RA had magically disappeared, which allowed me to heal without added pain. Now my neck was finally doing great but the RA had reared its ugly head yet again like Jason from Friday the 13th. (I think I’d have preferred Jason; at least he could end my misery.)
That’s the thing with flares. When they’re bad — I don’t know about you — but I think about dying. This felt like death. I could barely make it through my nightly viewing of Jeopardy, so I went to bed super early. Lying there exhausted by 8 p.m., the inside of my entire body felt like a furnace. I whimpered, tears streaming down my face, feeling sorry for myself. Which was ironic because I’d literally just written a story for CreakyJoints about how to reframe your sadness and negativity about your chronic illness.
Well fuck me — that was when I was feeling healthy!
I did write in that story, however, that it was okay to feel sorry for yourself for a short time. So I did that.
I thought about the old me who used to be so athletic, a three-sport athlete in high school (not unlike Al Bundy with his hand down his pants). And I was good. Captain of my volleyball, basketball, and softball teams. My nickname on the softball team was “The Hotdog,” not just because I liked to eat them, four at a time (my metabolism was sick back then), but because I flung myself into the air in the outfield, diving with abandon to make spectacular catches.
Currently, I could barely get up from the floor.
I also thought about my much younger girlfriend (hey now!) and how our relationship would be ruined if I couldn’t get my body moving. How was I supposed to have sexual relations when, right now, I couldn’t even get off the toilet without holding onto the counter beside it?
I was genuinely worried about my health this time (as well as worried about the coronavirus killing me, but that’s another story). What if this was the flare that crippled me permanently? WTF, I’m only 50 years old, I wailed inside my tortured head. Doing research for another CreakyJoints story, I’d come across a new study in the journal Arthritis Care and Research that found that RA patients “are likely to die before the age of 75.” Terrific.
Following my own advice, I allowed myself to feel the grief and pain caused by this flare but then I knew I had to make a plan of action or I would be doomed physically and emotionally. How could I help myself feel better? There were ways.
1. Be more consistent with my medication
If I’m being honest, I don’t think I was very consistent with my RA prescriptions during my neck drama. It wasn’t entirely my fault. First of all, I reminded myself that my doctor took me off my Remicade infusion for five weeks before and five weeks after my surgery to ward off infection. So I’d be back on Remicade soon — there was hope and help on the way. I just needed to be patient.
My bad was that I accidentally forgot to take my methotrexate one Sunday during this time period, and I also forgot my folic acid and thyroid pills a few too many times. I needed to focus again and get back on track with my meds because that actually really mattered.
In one study of rheumatoid arthritis patients in the journal Arthritis & Rheumatology only about 20 percent of people were compliant with their oral RA meds (DMARDs and steroids). That’s not good and can definitely cause flares and more pain. I know many of us may not be taking our meds properly because we are scared of COVID-19. We must be consistent.
(You can read more about arthritis medications and COVID-19 here, but the gist is that we should not stop taking immunosuppressing medications preemptively if we do not have coronavirus.)
2. Get my healthy eating on track
At the beginning of my neck drama, I lost 12 pounds — even while I was on tons of steroids — because I was in so much pain I couldn’t eat or drink much other than water. Well, after my neck healed, my appetite came roaring back. Although I no longer ate four hot dogs at a time, I noticed that I’d been eating a lot of bread, baking myself lots of quarantine comfort treats like Ding Dong cakes and almond cookies, and drinking three cans of Diet Coke per day. We all know sugar is bad for inflammation.
I vowed to cut back on all of those and promised myself I’d eat more vegetables, even if there was no scientific proof this would make my flare go away. I knew I felt better when I didn’t eat and drink those specific things.
3. Keep moving
Because of COVID-19 I had to take a sabbatical from my HIIT gym workouts, which really saddened me. The gym opened back up today, actually, but I’m not ready to go back just yet. I don’t think it’s safe because I’m on two drugs that can affect my immune system function. But I can’t do nothing. I need to do more activities close to home, like taking long walks and swimming. (Our neighborhood pool allow one person or one family who lives in the same household.)
Along with bacon seasoning, a chef knife, a new mop and 20 other ridiculous and unnecessary things, I also bought a gym mat on Amazon — nice and thick so my knees won’t hurt — so I can do home workouts.
I’ll let you know when I start that — hey, don’t act like you haven’t ordered dumb things you’ll never use online during this pandemic! Now, where shall I hang this beautiful new poster of the different kinds of sandwiches?
4. But also let myself rest
There is nothing wrong with taking naps or falling asleep during Judge Judy, if that’s what you need to get through a flare. I stopped feeling guilty about it because when I did take a power nap in the middle of the day in my bed, I felt so much better afterward. I also took a lot of hot showers, listened to soothing yacht rock 70s music like Neil Sedaka (lol), and lit candles because I found that it relaxed me and helped me feel better.
5. Accept help
I live with my mom in a retirement community in Palm Springs, California, and I do a lot for her because I like to, even when she call me “bossy.” But during this flare, she knew I was the one who needed help this time — and I happily accepted it. That meant letting her make dinner (even if I don’t like stinkin’ chicken limone), walk the dogs, open jars, and do the dishes. I let go of my control freakishness for the greater good. Don’t worry, mom, it’ll be back — with a vengeance. Mwah.
6. Get off my phone
Last time I checked, my phone told me I spend an average of 11 hours and 21 minutes tooling around on it, and that was “down 14 percent.” Oh dear. I blame the boredom of quarantine.
During a flare, there’s nothing worse than being hunched over your phone overusing your tender fingers to scream at dummies on Twitter or win gems just so you can make a Nancy Meyers kitchen on your Home Design app. Put the phone down. I repeat: Step away from the phone.
So, that’s what I did, and I’m happy to say that after I took better care of myself and finally got my reloading doses of my biologic, I’m feeling better again and can function. I may never again fly through the air shagging fly balls like Mike Trout, but I’ll settle for not wincing when I step out of bed in the morning and taking breezy walks in the desert sun.
When you’re in the middle of a bad flare, I know it seems hopeless, but please don’t give up. It’s all about self-care. And just keep looking for the light at the end of the tunnel.
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Joplin S, et al. Medication Adherence in Patients with Rheumatoid Arthritis: The Effect of Patient Education, Health Literacy, and Musculoskeletal Ultrasound. BioMed Research International. April 2015. doi: https://doi.org/10.1155/2015/150658.
Waimann CA, et al. Electronic Monitoring of Oral Therapies in Ethnically Diverse and Economically Disadvantaged Patients With Rheumatoid Arthritis: Consequences of Low Adherence. Arthritis & Rheumatology. May 2013. doi: https://doi.org/10.1002/art.37917.
Widdifield J, et al. Causes of Death in Rheumatoid Arthritis: How Do They Compare to the General Population? Arthritis Care & Research. March 2018. doi: https://doi.org/10.1002/acr.23548.