Family Feud: Auto Immune Edition!

  Good morning! How about today we have a bit of fun with Science? (OK, mainly the part of it that deals with auto immune disease, but it’s still Science.) And don’t worry if your brain gets bored and begins to randomly count your toe hairs, since there’s not going to be a test. (Ummm…the toe hair comment was totally random. I was NOT insulting your beautiful, hairless toes. Can we move on now? Thanks.)

  I really haven’t written much about my health recently because, well…I figure that’s pretty uninteresting. But something has presented me with a GREAT example of the fun and games auto immune diseases can lay at a person’s feet. (Immaculate, hairlessly-toed feet.) Thinking someone might get some good out of it, I figured I’d share.

  I’ve repeatedly mentioned my infamous Zombie shuffle of-a-walk, (even though waddling like a penguin with hemorrhoids might be more accurate.) After MUCH testing, they finally pinned it to a myopathy in one stinkin’ muscle in each leg. (myos- muscle pathos- suffering) (Ain’t science fun?)

  Then much “investigating” by my Rheumy ensued. Since I’d already been diagnosed with Scleroderma (skleros- hardening of derma- skin) he assumed my bod had laid down too much collagen on the outside of my muscle, effectively taking away its ability to stretch and move. (It’s just what Sclero does. *sigh*)

  Next, there was more blood work and a phone call telling my I DON’T have Sclero after all! (And a lop-sided happy dance followed!) That my blood showed Myositis instead. (myos-muscles itis- inflammation of) This would mean my white blood cells (WBC) are the dirty little mud-munchers attacking my muscles.

  What does all this mumbo-jumbo mean? Whether it’s a wild Gang of Collagen-gone-wrong or overachieving WBC, the results for my leggies are the same, but the way the damage is being done and the way it’s treated is very different. (My body is turning into a soap opera, "As The Immune System Turns [on me]” Or maybe a game show, “Family Feud: Auto Immune Edition!”)

  THEN another call! Now we’re back in the land of WTF. Upon further research, it could be the Myositis is caused by Sclero after all, or any one of a separate group; Polymyositis, Dermatomyositis, or Inclusion Body Myositis. (Ready to pull your hair out yet or look for the reset button on your brain? Yeah, me too!)

  Don’t worry about trying to remember or even decipher any of this. My whole point is sharing with you the "joys" of the auto immune diagnostic journey. Your body is this TOTALLY amazing, complicated piece of artistic work and when it begins short-circuiting? It can be as difficult to trace the cause as looking for an on-again, off-again electrical short in a headlight of a primo Ferrari.

  So for those of you just starting your journey, try not to drive yourself too crazy guys. There is a reason the statistics show it takes an average of four to ten years for an accurate diagnosis. (In the last three days I’ve gone from “Systemic Scleroderma” to “Myositis” to “Unspecified Connective Tissue Disease with Overlap Syndrome.”)

  However you slice it, IT IS A LONG, STRANGE TRIP! (Hang in there, ‘cause you are SO not alone!)

  On a completely different note, the fine ladies at Bonbon Break Magazine convinced me it was a great idea to start a Facebook page for this here blog thing. So…I did. And as far as I’m concerned, it HAS to be a fun, crazy, no-holds-barred PAR-TAY! I would be completely honored if you’d stop by and have some fun, tell some bad jokes, and cause just a bit of general mayhem. (In nothing but a good way, of course. *grin*)