Monday, May 24, 2010

It Has Got To Be “The” Lupus

Lately, I find myself saying “the lupus” not “lupus”, when referring to the disease because I think it may be gaining ground…

One thing that I’ve become very bad at is going to the doctor for things when I know there is a problem. That’s pretty counterintuitive for someone who’s chronically ill, I know, but it’s the truth.

I’ve been having some pretty serious dizzy spells, for months now. At first they were only occasional, and now they’re to the point that they are happening at least once a day.

At first I thought maybe it was a blood sugar thing, then I thought maybe it was from drinking coffee that’s too strong. Then there seemed to be some vertigo going on, too, and so I thought maybe it was a problem with my ears or my head. Then there seemed to be too many of them, and not enough reasons to pin them on, and I decided I shouldn’t wait until I see my rheum in June, and should pay a visit to my PCP.

And I don’t want an easy fix. I don’t want to be prescribed anti-dizziness medication. I want to find the cause. But that’s easier said than done when there are a host of possibilities. Although my PCP agreed that another medication isn’t the answer to this problem.

The main reason I avoided going to the doctor is because I simply didn’t want to know. I was unsure if this was lupus related, and if not, what then? For once, I found myself hoping beyond hope, that the dizzy spells were from the lupus.

It makes me a bit sick to my stomach to think that I am hoping that I can blame some other bodily quirk on an incurable disease. Even though, in my head, I know there is no cure for lupus, when I hear the word incurable, it truly makes my head spin (no pun intended).

I am reminded, in some kind of genetic lottery or twist of fate, that my body is attacking itself. It is viewing everything that it should hold near and dear, as something that should be gotten rid of, eliminated. And it is doing everything it knows how to get rid of what is really supposed to be there.

You know, when I think of my illnesses this way (because arthritis is attacking everything that lupus isn’t), it exhausts me. It gets me down. It makes me feel less hopeful, and more scared. Sometimes reality is hard to swallow, especially when it decides to smack you in the face.

This experience has made me realize the faith that I have to have in my rheum, and blind faith, at that. Because all I kept thinking was, what if I don’t really have lupus? What if they were somehow wrong all along and I have something that has basically gone untreated? Because the only way that lupus makes sense is that it doesn’t make sense at all. It’s so unpredictable, and can impact so many bodily systems, that it seems like it has to be right, because what else could it be? These thoughts swirled through my head as I imagined all of the possible causes of dizziness.

My PCP called me…on a Saturday…which is never good. White count is down, kidney and liver are up. Doesn’t explain the dizzy spells, but it does point to active lupus. And in some ways, it makes me feel like an idiot. Has my lupus not been active for so many months that I forgot what it feels like? Did I think that I could take on the world and run myself ragged without it catching up to me? Did I think that just because the lupus had calmed down a bit, that it wouldn’t resurface with a vengeance? I think I let the allure of feeling good seduce me into ignoring the signs that pointed to lupus.

While my PCP was incredibly thorough, I was left with a bit of a bad taste in my mouth, with her telling me that of course I should go to the emergency room if things get worse. Ah! I don’t want my body to be so unpredictable that the ER is my main line of defense.

Anyway, there’s no magic pill.

And I realize how little I know about this disease, but how much it thinks it knows about me.

So, I guess the lupus count starts again. Leslie 0, Lupus 1.


  1. So well said, Leslie. I can relate to every thought and feeling. This is so not how I envisioned my life would be prior to becoming locked in autoimmune hell. I work daily on keeping a positive attitude and putting things in perspective. But there are some days where all I can do is heave a massive sigh and wonder "What next"? Hang in there.

  2. Leslie, You sound real beat at the moment. I'm sorry it's this way for you. I tend to think of illness as a wake up call to what's not in sync in my life, at least for me. I have a hard time believing that the body attacks itself, but it surely is attacking something that is not meant to be there. So I am focusing on building my strength so I can quiet any foreign invaders, removing environmental chemicals from my life,reducing stress (which stimulates a lot of body uwellness), and changing my thoughts and outlook for the better. It's a long haul, but it' a good direction. Wishing you the best.

  3. Leslie, so very well stated. I do believe we all go through these mental discussions with ourselves. do I go, do I not go. Do I complain, do I keep it to myself. Do I attack it or let it run it's course. Maybe it's what I ate, that's my co-op!! This disease is like stepping into a boxing ring with a blind fold on. You know the punch is coming, but from where. AnD, how do I fight back not knowing where the enemy will land? Argh. but you speak your feelings quite well. I find ti helps to talk to "it" as it is lovingly called here. Auntie It.
    Gentle hugs.