I am a fifty-two-year-old woman living in mid-Canada. I was diagnosed in 1993 with initial symptoms of extreme fatigue, aching joints and Raynaud's.
I was first diagnosed with lupus by my family doctor and then with CREST by a rheumatologist. I was a single parent with two teenagers and in a long term relationship (not cohabiting). I was devastated when I was diagnosed. My symptoms remained fairly stagnant for about six years and then I started having extreme muscle and joint pain, very swollen hands, esophageal problems, constant nausea and the Raynaud's was getting really bad. Living in a place with -40C winter temperatures has been a real challenge.
I limped through the next couple of years with ongoing fatigue that would stop me in my tracks. I think that has been the worst problem to deal with. I have continued to maintain a full time job although I am not sure how much longer I will manage, since working does not leave me with anything left at the end of the day. I am now a grandmother of three little girls and try to interact with them as best as I can.
I was recently diagnosed with Hashimoto's hypothyroidism and am hoping that the medications for that will help the fatigue. My partner has been intermittently supportive as has my family. We are still not living together and I am concerned that he feels he would not be able to cope if I was 'in residence' full time. My daughter has been a brick. I do not know what I would do without her.
My former family doctor, who I recently dismissed, actually told me that I should just stop complaining and get on with things. That everyone has aches and pains. He would not follow my rheumatologist's directions regarding medications, and refused to follow up with regular testing.
I have a fabulous doctor now and she has brought me from a very dark place to one where I can again see the sunshine. I look forward to hearing from anyone who wishes to correspond.
Email: [email protected]
Story submitted 4-27-02
Story posted 5-5-02
Story Artist: Shelley Ensz
The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.
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