Kathy

Hi, my name is Kathy, and I have been diagnosed with CREST for about one year, with the Raynaud's being the first symptom that the medical establishment paid attention to, although for one year my primary doctor said,"yes, my wife's fingers turn blue when they get cold too, it's normal."  New doctor, finger ulcers, problems swallowing, and swelling of the fingers and toes, I was diagnosed. 

I am 49 with a 24 year old who has two small children and who was diagnosed with MS the same time I was diagnosed. I also have a 20 year old who has neurocardiogenic syncope (her heart stops when she stands up too long.) My husband of 25 years is very supportive, one day at a time, sometimes Plan A, sometimes Plan C kind of days. I work full time as a Post partum nurse, hope to for a long time to come, until the house is paid off.

Just read a shocker, 50% of CREST patients survive 12 years, didn't know life would be shorter, just more challenging. Appreciate knowing a bit of what is ahead of me by your letters, my rheumatologist is very much "don't worry about it, just deal with what you have today." I'm on Norvasc daily, and Methotrexate weekly 15mg, with a break/daily dose of folic acid. The esophageal muscles stopping is the most annoying symptom, waiting to see which way the food will choose to go, hoping to wait it out until the muscles start moving the food down toward the stomach again.

I work the hardest on the Raynaud's with "Bed Buddies" gloves and booties that I heat in the microwave and keep in my pockets. I'm less stubborn about dressing warmly, using an electric blanket (I'm now living in Arizona, came from snow country), but still haven't given up my caffeine. All in all, our family is limp and gimp, but between the three of us, we usually make a complete physical person, we can do anything, so far, assuming it's someone's good day.

Kathy - whiterobin_usa@yahoo.com

  

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