Kris and Allan

My name is Kris.  I'm not actually the one that has Scleroderma, it is my husband, Allan, that struggles with this disease.  Every day I wish it was me instead.  Of course I say that because I hate to see him struggle with the pain and discomfort, the muscle cramps, the skin itching that drives him to fits of panic, the trouble swallowing, the acid reflux, the finger ulcers that never completely heal, the unrelenting fatigue, and of course the hands that will never be the same again!  But I also say that because sometimes the fear and worry of losing him that I feel everyday are so unbearable that I wish I were the one with the disease. Doesn't that sounds horrible!  All the doctors keep saying that although this disease can't be cured it can be managed and one can learn to live with it.  Well they're not the ones that have to figure out how to live with it!  I sound so ungrateful- I do think that my husband has extremely good doctors.  He has a very good Rheumatologist that referred him to Dr. Medsger (University of Pittsburgh) who is probably the leading doctor in the world in this disease.  And an extremely good and compassionate Dermatologist that helps with the finger ulcers and the discolorations on his face.  But no matter how good they are they can't make things go back to the way they were before his diagnosis in April 2002. 
 
In 1999 my husband decided to make a career change and go to school to become an A&P (airplane) mechanic.  So we got the huge student loan, he graduated with a 4.0 and began work as a mechanic.  About a year and half into his new career we noticed that his hands were swelling.  It was the worst when he first got up.  For a while the swelling went down after a few hours but pretty soon it didn't any more.  During this time he was also eating TUMS like candy.  He drinks a lot of pop and coffee and I told him to cut down on his caffeine and maybe that would help with the heartburn.  Who would associate hand swelling and heartburn??  After about eight months into this I finally insisted that he go to the doctor. They ran blood tests and I was shocked when he came home from his follow-up visit saying that the doctor suspected he had Lupus.  He also mentioned it could be something else called Scleroderma but that that was such a rare disease he doubted that was it.  I had heard of Lupus and knew it wasn't good.  Luckily our doctor was on the ball and immediately referred Allan to the best Rheumatologist in town.  The Rheumatologist agreed that Lupus was probably what we were dealing with, again because Scleroderma is so rare.  He prescribed prednisone for the swelling and Allan took that for a month with absolutely no change.  When the Rheumatologist heard there was no change he said " then I think it's actually tissue build up and not swelling that you're experiencing."  That more than likely meant Scleroderma.  He immediately referred Allan to the top Dermatologist in town for a tissue biopsy.  While we waited for the results I got on the internet and looked up Scleroderma.  Needless to say I got the crap scared out of me after reading some information and I don't think I have ever gotten over it.  It seemed that the worst form was the diffuse or systemic forms and that as long as we didn't get that as the result maybe things would be ok.  Well, guess what... it is diffuse, systemic, scleroderma with Raynaud's of course.  Needless to say he is no longer able to be a mechanic, he can't grip anything.  And the pain he had to endured from standing on the cement hangar floor was unbearable.  My husband has the best attitude in the world though.  He mostly feels grateful that it's not something worse like cancer or Parkinson's.  He says mostly it's just an annoyance and an aggravation. I wish I could feel the same!  I think he says that to keep me calm!
 
If there are any other wives out there that are dealing with this I'd really like to have someone to talk to!
 
Thanks for reading and listening!
 



 
  

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