Living with Scleroderma

this is nothing but a curve ball

First UCLA visit this 2014

We arrived a little early at the UCLA Medical center that we were actually able to speak to a representative from the Scleroderma Foundation. She informed us about upcoming events that we should try to attend to get further information and resources.

Dr Furst asked me what has happened in the last 8 months since I’ve seen him and he wasn’t very happy. He reviewed my medical records, my PFT results, Barium Test and CT scan and said my scleroderma is actively progressing.

Dr Furst says they want to treat this condition as aggressive as possible. He’s recommending to go back to cytoxan chemotherapy for a year. I have to see if my Kaiser Rheumatologist will approve another year of chemo.

He said the good news is that most of the damage looks like it’s mostly inflammation which is hopefully reversible. And he wants to see me more regularly, at least every 3-4 months .

*sigh*

Today ‘s doctor visit didn’t turn out exactly how I thought , but I believe God has placed these doctors to take care of me and do their best to treat my condition.

And tomorrow , I’m heading back to Kaiser Sunset for my 2nd Rituxan infusion. Looking forward to some relief from my symptoms.

Goodnight, tomorrow’s another day!
Never stop fighting!

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Rituxan round 2

I had my first Rituxan infusion (round 2) last Wednesday. The day was long but I was very happy with my nurse. She knew what she was doing and she even found my vein right away.

Hubby stayed with me as always and I’m grateful he always keeps me company. We watched a lot of court shows, smacked our heads and laughed at the cases. I ended up stayed awake the whole time and I was exhausted but at least I was entertained.

I almost forgot how having chemo felt like, I couldn’t get up the next two days. My body felt like it was being pulled down into my bed. It’s been 6 days since my treatment and I’m barely starting to feel nauseous. I hope it doesn’t go through, since I only have over a week till my next treatment.

Until today though, I have to say I’ve been feeling the best I’ve felt in a long time. I think outside if the side effects, the treatment lasted me about 6 days symptom free.

Looking at the bright side of things, today is not over yet. There is still enough time to turn this day around. I’m looking up to God and just relying on His grace for strength and endurance for today.

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