It all started when I was twenty-one years old and I developed Raynaud's phenomenon. This condition became progressively worse and I now wake up in pain every day due to ulcers on my fingers and knuckles.
A couple of years ago, I was referred by my general practitioner (GP) to a rheumatologist who took tests and diagnosed me with CREST but failed to inform of this. When I rang the hospital they advised me that if I hadn't heard anything about the test results than everything should be fine. However, after a visit to my GP about another issue, she looked up my records and informed me of the diagnosis. I saw the rheumatologist last week, who has booked me in for a heart scan and other investigations.
I am feeling very low at the moment as after seven years of dealing with all the changes, and trying to carry on as normal, I feel like I have lost. I rarely go out. I find it difficult to carry out daily tasks and my face looks weird.
I am twenty-eight years old but I feel drained all the time.
My husband says he will support me but I feel like he gets annoyed and frustrated by my condition as he can't do anything to help me. I have two kids and that's all that keeps me going.
I don't think I am coping very well.
Email: [email protected]
Story edited 12/04/08 JTD
Story posted 01/15/09 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Thompson Devlin
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