Tuesday, June 3, 2008

Diagnosis: Just Normal Weird ...Until The Plug Of Skin Says Otherwise


Truth be told, my little blogging hiatus has been about more than just being technologically out of commission for the past week or so. I'm always slightly unsure about what to disclose here on the internets. You know? What do you, my faithful "blogging public", need (or want, for that matter) to hear about, from a non Sophie The Entertainer standpoint? And what will most likely lull you into a deep, deep bored-outta-your-skull drooling coma?

I'm pretty sure this topic qualifies as something that will cure insomnia. But in the name of keeping friends and family informed, here's the summarized version of what's been happening with me lately. (WARNING: if your tolerance for really dull subjects is low, you'd probably better jet right on past this one and wait for the cheese snowflakes to commence again.)

For the past several years, I've had these flare-ups of weirdness. (Okay, people who know me, shush! Not my normal weirdness. We're talking weirder than "Kristy weird".) Basically, I'll have several weeks of crazy symptoms, followed by a few days of feeling better. Followed by a few more weeks of pain, headaches, unsteadiness, feeling weak and tired, with kookadoo red, hot, blotchy skin.

...And I'm down in my hip and guzzling prune juice for my irregularity. (Just kidding. But sheesh if it isn't starting to feel like that! Just me, Bessie, and Myrtle, hanging out in the octogenarian-packed rheumatology waiting room, knitting potholders and doilies. Talking Bengay and bunions.)

I've had a positive ANA test for years, but it has always been a relatively low titer, and therefore "inconclusive" regarding which autoimmune disorder is present (or even if one is present). Recently, however, I've developed an elevated SSB (which usually points to Sjogren's Syndrome). But the symptoms I have don't really match up with Sjogren's, which is typically characterized by extreme dryness (eyes, mouth, skin, etc), and instead, according to the doctors, match more closely to those associated with lupus or some connective tissue order or vascularitis.

(Cue the ominous music.)

The problem with diagnosing lupus, unlike rheumatoid arthritis and some of the other autoimmune diseases, is that it cannot be specifically diagnosed through blood tests. At least not exclusively. Apparently there's not often a "Hark! Your labwork says you have this!" moment with lupus, like when you have...well, basically anything else. Doctors just use the bloodwork and the various numbers and levels as a tool to assist them (can you tell I've heard that little explanatory gem a few hundred times?) in making an educated guess about a suspected autoimmune condition.

It seems lupus is declared "positive" when, in combination with the blood factors, a person has four or more of the eleven lupus-like symptoms. Which, personally, I think is kind of a crappy way to diagnose something. (But maybe that's because I have a postive ANA and several of the things on the list.) I mean, I understand list-checking-vagueness is just the way it works sometimes in medicine, but I'm the kind of girl who wants to KNOW (to a " 100% definite, stamped on the chart" degree) what it is I have. Especially before I take medications for such-and-such "suspected condition".

I don't know. Perhaps I'm weird. I know popping pills is supposed to be groovy, man. But when we're talking about Prednisone and other not-neat steroids...well, I just have a big problem with taking steroids without knowing for sure. With taking steroids, period, for that matter. An occasional once-in-a-blue-moon shot for inflammation is one thing. Taking steroids long-term is another bird altogether. Yes, they help you feel better. Lots better, from what I understand. But they have some pretty doozie side effects. I'm not really interested in getting on something that's basically the equivalent of crack from a feel good/harmful standpoint. Plus (pause for a charming moment of vanity), being more chubby-faced than I am already... Um. Not cool.

But then constantly feeling this way - not so cool either.

Another helpful "tool" in diagnosing connective tissue disorders is to jet on over to the dermatologist and have a skin biopsy taken. So, yee-longneedle-haw, that's what I did this morning. The doctor numbed me up, and very expertly (and not too painfully, considering what he was doing) removed a plug of skin from my "rashy" upper arm. Which, apparently, now is destined for a very hot ride in its little jar to the pathology lab in Texas - where it will be processed and reported back on, in about a week to ten days.

One week. To ten days. OF WAITING.

And that's what I like to call: Not Neat Part II.

Did I mention eleven-ish years ago the doctor went to Hendrix and played basketball in the Mabee Center fairly often with Russell? Yeah. That was funny to discover. We had a nice little fifteen minute trek down Small Liberal Arts College Memory Lane. "Do you remember Whatshisdoodle?" "What's SuchandSuch doing?" "Oh, man, did you have Dr. Crowder for English?" Before the nurse, standing there pen in hand ready to dictate something, gave us a look over her glasses like, "Seriously, people, are we gonna chop up some skin or what?"

Well, then. Fun time over. Back to scary medical junk. That's around the time I spotted THE TRAY with the ridiculously long needle and the super shiny skin-extractor thingee. (Which actually looked a lot like a hole punch, minus the little paper confetti dots clinging to it.) Oh, boy! At least I knew I could have confidence in his pre-med school education. The Hendrix biology department - they don't let loose no dummies!

Snap, clap! Anybody still awake??

I just realized I promised the "summarized version"...and, as you can clearly see, that hasn't really happened. Alas, the art of conciseness is not my forte. Nor am I very good at waiting patiently and non-anxiously for test results. (Here's where the oh so attractive begging begins...) If you happen to think of me and my trying-not-to-freak-out/dizzy little self this week, and don't mind praying, I would greatly appreciate it. Also, in the meantime, if anyone would like to smuggle me a bottle of Phenergan laced Chill Pills or some Meclizine whiskey, that'd be mighty nice too. I feel like a motion-sick Navy shipman on stormy seas.

So (drumroll, please), without further delay, the summarized version of this tale is this: If you live in NW Arkansas and suddenly find yourself in a situation with "freckle's ugly cousin", needing to get it checked out and/or lopped off, I highly recommend Dr. Eric Stewart over at the Ozark Dermatology Clinic on Joyce street. (Wait! Or should I not recommend him? Will revealing how utterly awesome he is make getting an appointment darn near impossible? Definitely? ...In that case, listen up, everyone. He stinks. Smells bad. Real bad. Run away!) No, seriously. You'll be in most excellent hands. He's very nice, seems wicked knowledgeable, is easy to talk to about potentially freakadoo medical junk, and he's a Hendrix alum.

'Nuff said!! Over and out, interpeeps.



Anonymous said...

I probably wasn't supposed to laugh, but you make lupus funny, honey.

Between my gout and high blood pressure and your nifty junk, we're pretty pitiful around here. Wheeee!


Val said...

Aw, I'm sorry you've had to deal with all the uncertainties! (FYI: Dr. House would have NO problem diagnosing--that's the show I'm into now. =)

We'll pray that you find out something conclusive and wonderful very soon!

Anonymous said...

Wow Kristy, I will definitely keep you all in my prayers while waiting for these blasted test results. You made the story entertaining but you must be scared to death! I'll be thinking of you and waiting to hear the results!

Take Care,
Nancy and Jackson

Jen Forbes said...

Bummer about the waiting game. We will pray for you for sure. I've been reading through Psalms and have really been comforted. So many references to God as the "rock", a "refuge", a "comfort", and ways that he "preserves", "keeps" and "protects". I've had a rollercoaster couple of weeks but the Word has served to calm me. Hang in there, sister. Check your email when you get a chance.

Anonymous said...

Hi Girl,

I had a sneaking suspicion something else was going on and actually was going to send you and email to ask how you have been feeling...I knew you had had some weird flare-ups in the past....I will be thinking of you and sending lots of positive thoughts you way. I know the waiting game is the WORST part, so hang in there waiting for the results.

And crazy enough, you still have a knack at making even this light and funny...you are amazing!

Lora Lee said...

I'm so glad your back. I was having withdrawals. I'm at papas and Melba's house checking your site so I can get an update. Russ is typical man and didn't give real details of why you weren't here. Will be glad when your computer works better, so I can see more pics. Still haven't got to see the little stinker in person. Love ya'll

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