The semester is finally over. Grades are in, and as I sit here, reveling in the resounding quiet that comes after the chaotic finish, I can hear the whispered chants of: freedom, freedom, freedom! It feels good.
This semester’s end is punctuated, though, with a follow up with my rheumatologist. It’s been a harrowing academic year, though more because of my health than because of any academic impositions. Back in March, my diagnosis expanded to include undifferentiated connective tissue disease (UCTD) in addition to the fibromyalgia. What does that mean? For those that don’t know what UCTD is (or who might resist the urge to go off into space at the “undifferentiated”), UCTD is an auto-immune condition that is lupus-like. It’s not lupus, and it might never get there, but it could. It basically means that right now, between symptoms and labs, there is enough to know there’s “something auto-immune” going on, but not enough to really be able to classify it into one disease.
I’ve taken to the web-waves to find more information. I’ve visited (and joined) online forums, filled with questions that I forget to ask when I’m at my doctor’s office. I’ve heard these auto-immune diseases labeled as “invisible” illnesses and I found that so fitting. They’re invisible because we don’t generally have any outward showings of any illness. Sometimes we might limp, or we’ll look tired, but from the outside, there’s not much seemingly different than those who’ve just had some bad nights of sleep. And people who don’t know we have an illness might label us as lazy because we don’t take the stairs or carry boxes or say “no” to late night gatherings.
But inwardly – oh my. The pain. That’s the worst. Sometimes it’s a burning deep in the bones or muscles, like lava has temporarily taken over my extremities. Or, like I like to call it: growing pains on steroids. Other times it’s a throbbing in the joints, my fingers, my toes, my knees, my hips, my elbows. Sometimes it hurts when I breathe in, and other times my head starts pounding in an attempt at a migraine. Every day, I hurt. Sometimes less, sometimes more, but every day. And my memory – it’s mush often. Part of the fibromyalgia is the “fibro fog.” It sucks. I’ll forget simple things, like words, or something that happened recently. I have to write down everything now because there’s a very good chance I will forget by the time I need to remember.
I’ve had to make some decisions, prioritize, so I don’t stress myself and trigger an anxiety attack, and more pain. Writing has had to fall a few places down on that list, during the regular terms, so that I can be an effective mom, wife, daughter, and teacher. I have to make peace with that. During the main semesters I will have to resign myself to a few scribbled notes, a few Facebook poetics, and an overabundance of mental notes that, ironically, I might forget. But now that summer starts, oh, now I will redeem myself.
I have my moments when I want to cry. Usually, it’s when the pain is the worst (and these last 4-5 weeks have been on a particularly bad, active “flare-up” of symptoms). Or when the medication I’m prescribed back-fires with the side-effects (apparently, I’m extra sensitive to medication) and withdrawal-like symptoms (I never have and will NEVER EVER do drugs – knowing that what I felt for four days and nights is similar to what those on addictive drugs can feel during a detox is enough for me to say this, with certainty.) Or when I want so badly to run with my son, kick the ball, enjoy a sunny afternoon in the park, but I can’t because I’m exhausted, fatigued, in pain, or simply because I have to avoid the sun (the sun triggers inflammation, and since UCTD is an inflammatory disease, the sun will trigger flare-ups). I grieve my health then. At thirty-one, I feel ancient. And it sucks. These are my moments for grieving because I am grieving the loss of my health.
But more often, I am optimistic. One of the “silver linings” is that this invisible illness is not life-threatening, especially with the proper medication that helps halt the progression of this disease (thankfully, this medication, Plaquenil, I’ve been able to tolerate well, and the side-effects are relatively few). I am forced to slow down, and enjoy the time I have with my family more. It fuels my creativity. It makes me want to reach out to those that have similar diseases, these so called invisible diseases, because alone, it’s hard to make sense of it all.
There’s more that I want to say, but right now, my mind went blank – darn that fibro fog! Look for me more often, because I will be here. 🙂 And don’t feel sorry for me. I may complain and vent and grieve at times, but I don’t feel sorry for myself. Behind each cross we carry, there’s a blessing. And I certainly count my blessings.
Alexandra Alessandri 