Wow. How quickly time flies. It has now been two and a half years since I was diagnosed with the autoimmune disease limited systemic sclerosis (AKA scleroderma), and I joined the rare disease club. When last I reported on my progress I was at the end of a tough year; lung disease, oxygen, a referral to palliative care, gastroparesis, and constant pain. I was having trouble walking and my stomach was really acting up; I was losing weight at the rate of a pound a week. Ugh. I was somewhat upbeat by the end of the second year since I was off oxygen, but still, things weren’t really all that great.
What a difference six months can make. A change in medication made my Raynaud’s much easier to handle. I started doing yoga (carefully) a few months ago and added tart cherry extract as an anti-inflammatory that I can tolerate better than traditional NSAIDs. I bought shoes that felt better on my feet (Haflinger clogs) and got serious with stretching exercises for the plantar fasciitis I developed due to tightening on the bottoms of my feet. I switched to a gastroparesis diet that is mostly easy-to-digest, low fiber foods (got to love pasta and yogurt to do this one…) and began to add some blended fruits and veggies. My weight loss stopped and I started to gain back some weight. My skin has started to loosen up on my right arm (scleroderma literally means “hard skin” as the most obvious symptom is thick, hard skin that develops as the result of systemic scarring), which is pretty darn exciting! Over the last six months my energy has been slowly coming up and I have been managing with less pain; I can even walk normally! I’m breathing better and I rarely need to use the rescue inhaler. There was a Sjogren’s flare, but still, things are better.
I just finished making the latest round of testing and doctor visits, and I have to say, it is pretty exciting to visit with happy smiling doctors. My pulmonologist was almost giddy! My lungs and heart have maintained (scleroderma damage tends to be forever…) with almost no new damage; I am right at the edge of trouble, but I’m not there yet. I have good blood work, and even had the first NORMAL kidney function test in over 5 years. My red blood cell count is back down in normal range, and my muscle strength has improved so much I can now easily push shopping carts. It seems that the increased dosage of immunosuppressants has turned the tide and I am stable. STABLE!! What a wonderful word that is.
I will continue with all of my current drugs for now and there will be more testing in a year, but it is clear that I have definitely pulled up from the nose dive that they through I was in a year ago.
Life is good.
Back to knitting!!
19 thoughts on “The Scleroderma Chronicles: Year 2.5”
What beautiful news!!
It was just thrilling to walk out of these doctor appoints happy! 🙂
Bet there was a little happy dance involved, even if only on the inside!!
Oh, I was skipping in the parking lot!
I’m so happy for you that you feel better and can function daily on a happy basis. Man, you’ve been through the wringer. Hugs.
Thank you. It took awhile, but modern medicine has really knocked this thing down. Yea!! The drug that I’m on is off-label, and my doctor had to write an appeal, but it was approved and here I am. I am so grateful for all of my docs. It has been tough, especially one both of my sons hit health crisis themselves. One son is much better, and the other is finishing up his chemo.
Yay for stable!!!
Yes! Stable is sooo good. 🙂
I am happy to read you feel better and that you love life! Good 🙂
Thank you. It’s wonderful to have more energy!
This is such wonderful news! So happy for you! Hugs.
Excellent news. Congratulations on overcoming such a debilitating condition and getting your joy back
Truly fantastic news! I am glad to hear you are doing better 🌷🌷🌷
Fabulous, fabulous news!!!!! 🙂
It is. 🙂
What wonderful news! ☺
This is such great news. Glad to hear you are doing so well. You sure did turn the corner. So happy for you. Keep putting one foot in front of the other. You got this, girl!!! You’re a true inspiration. A lot of people would probably just give up with all of that you have going on, including myself……….I have a lot going on, too. But, I can still breathe, and walk. That not being able to breathe is scary. I hope you continue to do well. Take care. XX 🙂