Despite more than 26 years of living day-to-day with rheumatoid arthritis, I am still learning.
Learning and struggling.
I don’t want anyone to think I’m sicker or in more pain than I actually am. The reality is that, say, if I were to rate my wellness on a scale of one to 10, one being in perfect physical health and 10 being near death’s door, I hover daily between three and five. Same goes for the joint pain.
Not too bad, really, given how horrific the disease and its accompanying pain has been in the past and could be again, should the RA meds I take every day stop working. And most of the time I can blunt any worse pain with painkilling drugs of varying strength: Tylenol, tramadol and vicodin.
And yet … and yet.
I finally saw my rheumatologist yesterday. I’d had to cancel this appointment twice because of ill-timed family emergencies, so now I was two months late. My doc gently pointed out that my labs were outdated by three months, since I’d done them in March for the original April appointment I’d missed. Please, he said, have them done again this week. I promised I would.
With the little scolding out of the way, he perused the lab results and said everything looked good. My sedimentation rate was somewhat higher than “normal,” but not bad given my RA. In fact, for someone with RA the sed rate was good. My CRP was good, too. My liver remains as healthy as can be. And there’s no anemia or any other problem to be concerned with.
Of course I was glad the test result was so glowing. Except… well… it was also confusing and even a little frustrating.
Why? Because I’ve had increasing pain and some swelling in my hands—enough to keep me taking tramadol regularly—and increased incidences of sudden, brief, sharply painful, way-up-there-on-the-pain-scale flares in my knees and feet near the small toes. In the early years of my experience with RA, these small flares nearly always announced a massive, days-long, crippling flare. Today, the awful flares don’t follow those sudden stabs. Instead, they fade away to nothing, rarely lasting for more than 30 minutes.
Well, yay, right? Sure, except that each time it happens, the pain wrenches my mind off whatever I’m doing and ohgodsitsabadflare! takes center stage in my consciousness for awhile. It’s like waiting for a bullet in the back every single time it happens.
The other exception to “yay” is that the daily hand pain is slowly, slowly getting worse, rising in tiny increments. Maybe that’s why no significant disease activity shows up in the labs. I swear, rheumatoid arthritis has to be one of the most maddening autoimmune diseases out there. Its symptoms—gnawing or shocking pain, fatigue, and malaise—can be constant and even debilitating without any worrisome disease activity showing up in blood tests. That leaves only the sufferer’s word to prove that he’s under attack by adverse symptoms.
And we do know what often follows such a claim: the words faker and shirker and malingerer come to mind first, closely followed by hypochondriac and even drug-seeker. Even if the doctor, friend or family member doesn’t say them out loud, their eyes shout them. It’s demoralizing. Embarrassing. Humiliating.
My doc checked my hands methodically. Naturally, yesterday morning was a “good” one. I’d awakened with no pain or swelling in my knuckles or wrists, and my appointment was at 8:20 a.m. My doc said my hands looked “good.” There was no telltale swelling, heat or redness. (Never mind that outside a clinical setting, swelling often doesn’t accompany RA pain.)
Nevertheless, he said he’d renew my painkiller prescriptions. I sighed, defeated again.
He also said that given my fabulous lab results, I could rest assured that my present RA medication cocktail is working to keep the disease under clinical control, even if it doesn’t necessarily relieve all my symptoms. He also reminded me that my particular cocktail—sulfasalazine, leflunomide and plaquenil—is just about the safest one he can prescribe.
How can I complain?
I did remember to ask him about that long-ago diagnosis of palindromic rheumatism I’d had. Could it have been true? That snooty, disdainful doctor—did he only seem that way? Was he right?
Oh, yes, said my doctor. Not only does palindromic arthritis frequently precede a diagnosis of RA, it can be present along with RA. And it’s treated with RA drugs. The diagnosis didn’t surprise him at all.
So, I continue to learn even as I struggle to cope with my old dragon. His teeth remain blunted, thankfully, but he still has a heck-of-a bite, one that reminds me of his latent strength and power.
And as for the family? Mom is doing well. My uncle, after succumbing to a bad case of c.difficile diarrhea and dangerously heightened blood calcium levels, is now living in a local senior care/rehab facility, where he’s regaining his strength and getting better each day. After a long course of strong IV and oral antibiotics, the c.diff has been vanquished. And because we’d already been practicing careful hand hygiene, neither my aunt nor I caught it or, we hope, spread it to anyone else.
It’s been an interesting couple of months.