kicking puppies is bad

Q: What does a blind, deaf, quadriplegic baby get for Christmas?  A: Cancer

Some days I feel like the blind, deaf, quadriplegic baby who gets cancer.  The internet seems filled with blogs written by people “coming to terms with” (whining about) their chronic illness.  And I try not to be one of them.  In over 100 posts, I haven’t mentioned that I wake up most mornings feeling like I was wrapped in barbed wire, and thrown against a brick wall (which was then hit by a articulated truck filled with angry killer bees).  But auto-immune diseases suck.  And today I am going to whine.  Because one of the few things that sucks more that having an auto-immune disease, is that having one auto-immune disease is a “risk-factor” for having other auto immune diseases.  That’s right.  When you are blessed with UCTD or lupus or scleroderma, you are likely to also be blessed with another happy auto-immune gift like rheumatoid arthritis or systemic sclerosis.   Merry Christmas me. 

Because of this, I wasn’t terribly shocked when my Gynacologist suggested I had another auto-immune related disease: Lichen Sclerosus et atrophicus.  Yes, its the same root as atrophy, meaning wasting away, and referring to my vulva.  She asked if I wanted to biopsy the “affected area” (my vulva – ouch).  She wants to cut off a piece of my sensitive girl parts (which according to one of the whiny blogs from another person with LS, is more painful than childbirth).  Again, OUCH. 

 Having spent four years as a statistical programmer assessing health care, one thing that really bothers me is unnecessary medical procedures.  People feel the need to have a name for every disease that effects them (especially in America) even when that name will have no impact on their treatment.  They need to know if  their toe is broken?  The solution -whether broken or sprained - is to tape it to the toe next it it.  But they *must* do an expensive ex-ray to see.  That way they can whine more.  Their boss will have extra sympathy if something is broken.  This causes lots of unnecessary (sometimes painful) tests (like cutting off pieces of my very sensitive girl parts). 

I asked how a (painful) biopsy (that involves removing a piece of my womanhood) would alter treatment.  It wouldn’t.  Either way, they were going to suggest intensive steroid cream and “watching things”.   My girl-parts doctor suggested purchasing a hand mirror to I could “keep tabs on the situation” (stare at my vagina daily, watching it shrivel and die).  That pisses me off.  She wanted to cut off a piece of my vulva to do an extremely painful biopsy – which wouldn’t effect *anything*.   I had a general idea what sclerosis did (from graduate research on multiple sclerosis, and being incorrectly diagnosed with scleroderma in the past).   So I went home – with a prescription for steriods and instructions to “keep tabs on my vulva” without asking further questions about what exactly lichen sclerosis was or how LS would effect my life. 

Unfortunately, curiousity got the best of me.  So I used google to see exactly what I had to look forward to.   ”There may be traumatic tearing of the skin during intercourse or defecation. Destructive scarring is common; the labia minora may fuse making micturition (the act of voiding urine) difficult”.  My va-jay-jay and anus may fuse shut.  F.M.L.