Wednesday, September 7, 2011

Dang. Has it been a YEAR?

I've been so much in recovery mode that I've completely forgotten about disease blogging for a while.  Boy oh boy, there's a lot to catch up on!

So, I had to drop the blog for a while, as I needed time to actually get s#!t done for a change.  I'm now officially a year behind-er than when I started last fall, but on the bright side, I don't have scabies.  That's an improvement from last year.  :)

On the whole, things have been rough, but going well.  Two of my last three ANA scans have come back as positive for anti-centromere antibodies, and the titer (the measure of how much inflammation there is) was finally high enough to prove that I was having an honest-to-goodness autoimmune reaction.  No, I do not have allergies.  No, I don't need to sleep more.  I'm not (just) depressed.  This is a freakin' REAL autoimmune event, dammit.  So THERE.  

Strangely, when my rheumtologist, Dr. W., told me this last summer, I was disappointed and thrilled at the same time.  Of course I want this stupid thing to just magically disappear.  I want to eat like a normal person and not need a nap after four hours of studying.  At the same time, I felt vindicated.  After the ass-chewing I got when my illness forced me to delay my second field exam, it felt better to know for sure that I wasn't making any of this up.  that third positive ANA was the tipping point.  It meant that my doctor and I could finally talk seriously about treatment for my symptoms.  I've been on a standard dose of Plaquenil now for about three months, and I'm positive I'm seeing improvement. 

As for what we actually call this thing... that's still up in the air.  It depends on which standard you go by.  Based on my symptoms alone, my GP, the fabulous Dr. H., still wonders if I'm in a pre-lupus stage.  In some ways, that's the diagnosis I think I lean towards, too, mostly because there's a comfort in simply being to point to a name and say, "that's the bad man who punched me in the face." 

Based on my blood work, however, my rheumatologist, Dr. W., is leaning towards CREST syndrome.  For some irrational reason, that scares me more than lupus-- probably because I just haven't thought about it much.  CREST syndrome, for those who don't know, is the kinder, gentler form of scleroderma.  Patients have the same problem with hardening tissues, but it's usually limited to the hands, feet and face; other symptoms behave just like most other autoimmune diseases. That's the reason that, whenever I see Dr. W. now, he pinches my knuckles to see if the skin is getting any thicker.  So far, so good. 

The reason he's leaning toward CREST syndrome is because of those pesky anti-centromere antibodies.  You see, each autoimmune disease has a similar profile, but they usually end up with favorite parts of the cell they attack.  For CREST syndrome, usually that "signature" antibody is anti-centromere.  Patients with a consistent presence of anti-centromere antibodies usually tend to get CREST syndrome more than lupus.  Now that it's showed up on two different ANA screens, CREST syndrome looks more likely than it did before. 

But hold on-- not so fast.  Anti-centromere antibodies, it turns out, can indicate other problems as well.  You know, like Raynaud's disease.  And since I do have a problem with circulation, blue fingernails and the occasional attack of "zombie fingers," perhaps my centromere antibodies come from that instead.  And since Raynaud's is often a complication of lupus...  we're back at the drawing board. 

So, at some point, I'll tell you all the interesting things I've learned about living with AI disease, trying to balance graduate school, and being a decent wife to my very, very understanding husband.  But all that will have to come later.