Living with Scleroderma

this is nothing but a curve ball

Today is the first day…

on September 25, 2012

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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2 responses to “Today is the first day…

  1. Kim says:

    Keep fighting Ate Tin! I think everyone has a “number” and only God knows what it is. Thanks for the reminder that no matter what battle we’re facing, every living moment we should focus on the things that REALLY matter. And that in the end, “it’s not about us.” Love you cousin! Here for you if you need anything!

  2. ca1991 says:

    Thank you for writing this blog.
    I am nearly 22 and have scleroderma. I was diagnosed when I was 5.
    The doctor told us that I wouldn’t make it past the age of 7… But I’m still here!
    I just wanted to give you a positive part of my journey with scleroderma.
    It’s not easy but by the grace of god I’m able to live! Each day is a gift! God bless you and your family!

    Ps… I had a good laugh at a part of your recent blog where you mentioned that they couldn’t get an O2 reading from your fingers because of the raynauds…. I can totally relate!!

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