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.

Saturday, May 15, 2010

Does Misery Really Love Company?

I attend(ed) two “in-person” support groups; one on campus through the student health clinic, which I helped start, and one off campus sponsored by the Lupus Alliance. The on-campus group is for students with any type of chronic illness, and the other is specifically for people with lupus.

One thing I’ve noticed is that at the several support groups I attended, while we often talked about serious issues, most of our time was spent laughing. This is sort of surprising to me, or I think, rather, would be surprising to healthy people, who probably think that support groups of this sort are a pity party, full of a bunch of “Debbie Downers”.

There was a time when I felt grateful for these few hours every couple of weeks, where I could be open and candid about illness and other things going on in my life. The student group has ended, and unfortunately, probably won’t continue next year. And lately, you couldn’t pay me to go to the lupus support group. I haven’t been for four or five months.

When my disease activity is low, I have a much easier time of dealing with group than when I’m in active disease mode. You would think that it would give me comfort to be around other people who know what I’m going through during those down times, but instead it just feels overwhelming, adding insult to injury. On the other hand, when I’m feeling good, I don’t really want to go and hear how bad lupus is. Because I know how bad it can be. I’ve been there, and will certainly be there again.

I think another thing that has kept me from getting more attached to the lupus group is that I am usually the youngest one there, and there are several other characteristics in which I strongly differ from the other people that attend. On the surface, these differences aren’t insurmountable, but when it comes right down to it, I feel like I have less in common with many of them than I do with other people I’ve met who have totally different illnesses than me. And that’s what was great about the student support group. Even though we had different illnesses, we were all dealing with the common experience of navigating higher education – which can be unforgiving to us chronically ill folks – while also dealing with the unpredictability of illness.

Generally, I think support groups are really useful, which makes it even more difficult to admit to myself that I am having serious issues about attending, and that as far as the lupus group is concerned; I don’t know if I’ll ever go back. Because right now, for me, my goal is getting healthy and staying that way, and if the support group doesn’t fit into that schema, I’m not going to do it.

I’d like to hear other people’s experiences with support groups. Do you generally find them helpful? Or do you find more help from more informal means?

For me, I have several friends now that I have met through various venues, who are chronically ill. I find our encounters much more helpful and therapeutic than I find traditional support groups lately.

And Truth be told, for the most part, I have been doing better lately (er, well, I say that now as I’m pretty sure I’m in active lupus mode right now…more on that in an upcoming post). But that doesn’t mean that things are easy or that lupus isn’t a part of my life, because it certainly is, everyday. It’s just that it has taken a backseat to other things, like trying to build a wonderful, solid relationship with my boyfriend, working on finishing my second preliminary examination for graduate school and starting my dissertation, working to create a non-profit organization, and working on writing a memoir.

I think this issue with in-person support groups has once again made me so thankful to have the online community of chronic illness bloggers, who have been, and continue to be, extremely helpful and supportive. It’s funny that we live in a time where “live” communication just may not be as good as the virtual world. And in some ways, that’s the nature of the beast. One of the main problems with “live” support groups for chronically ill people is that, inevitably, the group that participates is not consistent, due mainly to illness. And this is a serious impediment to building community and staying connected; which is less so the case virtually.

And I personally don’t think of the online chronic illness blogging/virtual community as a support group, per se, because it’s less formal and organized than a “traditional” support group should be, although it seems to be leaps and bounds more beneficial. In many ways, I think of the online community as so much more. It’s more than support, it’s my life line.

Monday, May 10, 2010

“65 Roses,” “Cystic Fibroris,” And Other Tongue Twisters

May is Lupus awareness month. And today is World Lupus Day. I cited an article in my last post, Time Is A Luxury We Don’t Have, about young people blogging about death. I did some research on the main person that the article was written about, and I learned a lot.

So it goes that when children who have cystic fibrosis are young, they can’t quite say “cystic fibrosis”, so they end up saying “65 roses”.

But I have to wonder. Haven’t we all had these moments? Moments where we didn’t understand, couldn’t comprehend our illnesses? That we can’t believe how f***ed up the body can get, and that it’s happening to us?

Like so many others, when I received a diagnosis of lupus, I didn’t know what it was. I don’t think I had ever heard of it before that time.

I am always amazed by those who became sick when they were very young, mainly because I’m not sure how they got through it then. I’m not sure I would have been able to. And I am humbled to live in a world with such people, but so sad that so many don’t get a chance to see a cure for their illnesses.

Will there be a cure in my lifetime for lupus and/or rheumatoid arthritis? I hope so. If not a cure, will I go into remission? Again, I can only hope.

A popular CF slogan is that “CF Means Cure Found”. So what does lupus stand for? Well, I spent some time thinking about this, and this is the acronym I came up with:


Right now, for me, this is the best I can hope for, as far as my illnesses are concerned. I can not only hope that doctors learn more about these diseases, enough to really provide their patients with help, but I also hope that there will come a time when I really understand my illnesses, how they impact my life, and how I can live best despite them.

Last night, my boyfriend and I watched “And The Band Played On,” a captivating movie about the AIDS epidemic in the late 1970s and early 1980s. What struck me most about the film was how far we haven’t come in understanding and finding a cure for AIDS.

And there are so many other illnesses, including lupus, that this is true of. And so, while May is lupus awareness month, and today is World Lupus Day, I urge readers to look beyond lupus, to learn about other diseases, and to see how truly similar the chronic illness experience is. There are so many illnesses of unknown cause and cure. And that is the thing that has always amazed me. How similar the chronic illness experience is, despite having different illnesses.