Living with Scleroderma

this is nothing but a curve ball

Prednisone—argggh

steroids
Prednisone is kicking my butt! I’m so swollen and I can’t stop eating!

This is my picture from last week when I started taking 40 mgs of Prednisone everyday
and today.
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Can you see how my face got so round all of a sudden? Within one week! WOW!

Prednisone is a form of steroids. I take Prednisone because it helps me to stop coughing. But for the last couple of days, my hands and feet have been so swollen that they actually hurt. I can feel the balls of my feet hurting and I’ve been sitting the whole time.

A friend of mine has been on steroids for 4 years and its starting to take a toll on her. I’m gonna try to manage my symptoms better so I wont have to take so much steroids.

I mean, okay fine, enjoying my food and gaining weight is one thing (especially when lots of scleroderma patients have been losing weight, because they cant eat). But to have your ligaments and bones and other parts get all fragile too… hmmmnnn… NO BUENO!

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Chemotherapy 1-4 DONE!

I just finished my 4th Chemotherapy of Cytoxan today. Just 2 more and I’m done.

People ask me why am I going through Chemotherapy. They ask me if I have cancer.

Scleroderma is not cancer. Chemo treats cancer by attacking the cancer cells. In my case, Cytoxan is supposed to help me with slowing down the progression of my condition.

With Scleroderma, my body overproduces (confused) white blood cells (anti-bodies) that are fighting my own body. This causes inflammation throughout the body and in my case, in my lungs. It’s the inflammation in my lungs that are causing the fibrosis.

The Cytoxan (aka Cyclophosphamide) is supposed to suppress the white blood cells and the inflammation in my lungs.

I forgot to post this photo from Chemo #2
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Then from Chemo #3
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and today from Chemo #4
Chemo 4

A lot of people are scared of Chemotherapy. I can’t speak for anyone else, but let me tell you my side effects from this treatment. I get hot flashes like crazy. I don’t sleep well (maybe with all the meds I’m taking as well). People say you lose your hair or experience hair thinning, I haven’t experienced that yet (but I’m always on a lookout for cute hairpieces ;P) Nausea and Vomiting? NOPE, I haven’t had that really. But the FATIGUE is unpredictable. I don’t know if it’s the treatment making me tired or my scleroderma. Either way, FATIGUE is something I’m trying to manage because I never know when it will attack.

On a good note, I get my COUGH free days up to 3 days after each treatment. It’s not a lot, but for someone who’s been constantly coughing everyday for 4 years, that’s quite an accomplishment.

I had to take a chest xray about a month ago and my Lung Specialist shows that my fibrosis was still progressing. My rheumatologist also read my last blood work and said the same was with my scleroderma. They say that the treatment takes a while to kick in the body and for the actual results (whether working or not) to show. So technically, i really have to wait until my last chemo and see if it did work for me or not.

I have another PFT (Pulmonary Function Test) scheduled in August. My Lung specialist tells me I’m close to being a Lung transplant candidate and the PFT will determine that. At first, I was a little excited for another alternative. Then when I got home and read more about it, I realized how dangerous the procedure can be. I’m not thinking about that now though. Tonight, I read some people online discussing how Cytoxan has helped and even improved their lungs. So we hope and pray that things can only get better from here =)

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Walk for Cure 2012 – Team Kristine

My husband asked for 4 volunteers to walk with him at the last Walk for Cure @ La Mirada.

In our surprise, over 40 people came to support us. It was such a humbling experience. We are thankful for every person that came out to spend the day with us.

Walk for Cure 2012

Some of our church family.
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Extended church family
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My best friend from Highschool.
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I met a new special friend that has the same kind of Scleroderma that I have.
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Look at these Teenagers!
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Hubby’s old friends from junior high came. One family even drove all the way from Vegas.
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Our Kiddies
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Our Parents
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My husband who made everything possible
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Our Goodie Bags for Team Kristine!
Walk for Cure

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