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Mick Breske: UCTD/Lupus

So I know how it feels to feel like an outcast.

Regardless of what gender my name falls under, I am a female who has struggled for the past five to six years to get a straight diagnosis. I have been to countless doctors with my many symptoms, which include joint and muscle aches and pains, fatigue, rashes, swelling, and many others.

At first, I thought I was losing my mind.

I started with my family doctor and from there, I became very frustrated and very untrusting of medical personnel. First I came across one nasty nurse, then a bookkeeper that could not get my account straightened out, followed by doctors who continually asked if I drank too much and how much did I smoke, and who told me, "We think you are depressed!" I felt I was being treated as some dumb blonde.

Finally, one day I was referred to a rheumatologist. That was five or six years ago, and I am still being told different things: one time I have lupus, and the next time I have undifferentiated connective tissue disease (UCTD). All this simply means is they are not entirely sure yet which CTD it is.

Some of the doctors have said to me, "Oh, you do not want to have lupus or scleroderma." Duh! Now is there some reason I would want one of these diseases? I just want to know what is wrong, and what to expect!

So I know how it feels to feel like an outcast, but dealing with this disease is not nearly as bad as dealing with the question: "What is this disease?"

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This Story is Featured in Voices of Scleroderma Volume 1

The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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