Looking into the Jaws of the Wolf

Well, it's been an interesting year for me.  I'm a PhD candidate in a graduate program in Appalachia where I study Anglo-Saxon literature, and I just had my first big "coming-out" as a serious scholar a couple weeks ago (and my paper was very well received, too).  I passed my field exam in Medieval literature back in March.  I just turned thirty in April, and I just found my first gray hair.  All in all, it's been a pretty momentous year for me.

Oh, and one other thing: I might have lupus.

I just found out about it last Thursday after some routine blood work.   I've been symptomatic since at least 2004 off and on, and if I'm honest, my symptoms might have started just a few months after I was married in 2001, but honeymooning makes you forget a lot of unpleasantries.  I have had problems with numbness in my hands before which lasted a few weeks, but this time it's been going on for about six weeks and it has been getting worse.  So, I swung into my student health center on campus, and the fabulous Dr. H said she wanted to re-run my sed rate/ANA tests one more time, just to be sure.  After six years of this garbage, I realize now that I was getting pretty blase about the whole thing. 

"Sure, why not?"  I quipped.  "I suppose it's about time, anyhow." I gave two vials of blood and popped out like nothing ever happened.  After all, the last three times I'd been tested were negative, and I was sure this batch was going to do the same.

Well... it wasn't.  For the first time since I've been showing symptoms, I had a positive ANA (anti-nuclear antibody) test result.  In layman's terms, my body is producing antibodies that attack cells.  That doesn't mean I have SLE (systemic lupus erythematosus).  But it does mean that I now have a non-zero probability that I have an auto-immune disease.  I may actually have lupus after all.  I now have to take the possibility that I have a life-changing and permanent illness seriously, and I'm about to undergo a long and painstaking (and expensive) process to figure out if my body is trying to kill me. 

Well, shit.  And I thought studying for my field exams was stressful. 

Strangely, my first impulse was to start blogging about it.  (No, that's not true.  My first impulse was to get really, really drunk.)  Blogging was the second impulse.  But I've always been a writer by nature, and so it's natural for me to want to figure this all out by writing about it.

Secondly, I wanted to write this down because I'm realizing how much of a pain in the ass I'm about to have reconstructing my medical history for my rheumatologist.  I've never kept any clear records over the last six years, and now I have to give a medical history to him, upon which a large part of my diagnosis will depend.

Third, I've discovered that whatever the hell this is that makes my fingers go numb, my intestines revolt and my heart to have inflammation episodes also screws with my head.  I'm having trouble remembering things and I need to write them down.

And, finally, I'm hoping this might be useful for others.  I can find a lot of info on the Internet about life with lupus.  It's harder to find anyone who can give a good accounting of what it's like to have to live through the process of being screened for an autoimmune disease.  It may very well turn out that I don't have SLE.  I might have something else entirely.  But my chances of having SLE have just gone from a mere possibility to a statistical probability in a week.  I'm currently going through the panic/sickness/depression of dealing with this, and it would have been nice to know somebody else who's going through this, too, and compare notes.

So, that's my current project.  This blog, I hope, will contribute to my medical well-being by giving me a record of everything I wish I had written down before.  I hope that writing about all this keeps me sane, too.  And, maybe it'll be useful for someone else to stay sane as well.

-- Ann-Marie