Living with Scleroderma

this is nothing but a curve ball

Today is the first day…

What an incredibly exhausting day!

After an almost 2 hour drive to Westwood, we finally met Dr. Furst at UCLA.

He let me talk, asked me some questions, looked at my file and examined me.

He confirmed that I do have scleroderma, but i need more tests done. He thinks there may be other things going on with my lungs aside of what’s been recorded and he definitely wants to eliminate other possible conditions I may have. He also thinks that my Gastro intestinal tract is more involved in my scleroderma.

Dr Furst is very good. He asked questions as if he already knew me. And the good news is he knows my rheumatologist in Kaiser so they can actually call each other.

The bad news is that he was able to give me a number. He said I have a 40% chance of dying in 10 years.

Yes I know nobody really knows, but he gave me a prognosis based on his experience with scleroderma patients.

I just can’t help being emotional, anxious and confused.

Even though anything can happen to anyone at anytime, it feels different when someone tells you your chances in the next few years.

There’s so much thats going on in my head. I don’t have much time to waste. I have to make every single moment count…. Now more than ever.

Today marks the first day of the rest of my life.

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