My Life on Lupus: I Want a Better Disease

I haven’t been posting much these days, in part because it’s winter again. Winter always rips through my body. Why is that? Winter should just be cold weather and snow and ice, right? Not for me. I guess it makes sense when you think about it: my body gets cold, I walk around hunched over and tense, my muscles lock up, then they ache and keep me from sleeping well, then I walk around for days at a time fuzzy brained AND achy AND hunched over AND tense AND cold. Sounds logical, right?

Except for the fact that sick minds aren’t logical. Whenever I get a weird symptom, the first thought I go to is: oh God, I’m dying. I now have MS or a tumor or early onset Parkinson’s. Now I’m really, really screwed.

Of course, that’s never what it is. It’s always the damned lupus. Every once in a while, though, I want something different–not one of those dying diseases, you understand, but the straightforward ones. The ones where the doctor looks into your eyes and nods and says, “I’m writing you a prescription. This stuff is hard on the [insert sensitive organ here–bowels, knees, mouth, etc.], but once it gets in your system, you’ll feel much better.”

See? I’m a reasonable person. I can take a long, painful convalescence. I just want to know that after a period of time that I know will suck, I’ll feel like myself again. I want a disease that will go away.

Recently, I’ve been bothered by pain in the arches of my feet. For maybe a week now, I’ve been waking up to painful arches. What the hell kind of symptom is that? I know I should probably talk to my doctor about it, but a trip to the doctor always seems to involve a full-blown plan of attack: which doctor should I call? What should I ask that will make the doctor respond? What time should I haul my ass to his office? What symptoms should I remember to talk to him about? So many, many steps, and I have energy for none of them. Plus, it’s likely that if I do get in touch with someone, it’ll mean five more doctors’ appointments with different specialists to rule out what my symptoms might be pointing to. Then, maybe some more appointments to deal with treatment. The last time I told my GP I had sore hips, I found myself juggling appointments with four different doctors (including two new ones, which are always fun to manage; one I had to drive 45 minutes away to see), AND I got slapped with two ultrasound-guided cortisone shots in two different places AND a six-week, twice weekly stint in physical therapy. The good news is my hips no longer hurt. The bad news is if they start hurting again, I’d rather invent myself some robot legs that run through all those hoops a second time. At least I could do most of the research while lying on my couch.

Anyway, we’ll see if I get anything done this week about my feet. Most likely, I won’t be feeling any better anytime soon. But that’s the life of someone with a chronic illness. You can never sit back and say, Smooth sailing from now on.

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4 responses to “My Life on Lupus: I Want a Better Disease

  1. Lupus, huh? Not an easy gig that…I have an aunt who has been battling/coping with this particular bad ride for almost two decades. I’m sorry you’re experiencing some of its nastier symptoms. Hopefully they’ll continue to develop medications to treat this and/or other treatments. I can relate somewhat (as to having a chronic illness, I mean) – I’ve had Bipolar 2 for almost 3 decades…been stable for over ten years but it’s always a bit of a crap-shoot, wondering if the meds are going to hold (I’m a bit more relaxed now that it’s been so long since I’ve been hospitalized but it’s never a “for-sure” thing)…Again, sorry you’re not doing so well – hope things turn around for you soon.

    • Hey, thanks for the kind words, by the way. Sometimes I have a problem getting back to people in a timely way–sorry about that! So glad you’ve been hanging in there for so long with the bipolar thing. That’s a really, really nasty illness. Keep hanging in there. I know what you mean about the meds (I feel like I’m a perpetual chemical experiment!), but if the current scheme works that’s terrific.

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