I’m Kelly and I am 41, about to be 42 in October 2019. But these days I feel like I'm not far off from the nursing home life. I am halfway joking, which also helps me “deal” with this awful disease and the reality of it all, but part of me honestly feels it could be true. During one of my early-on Flare-ups from Dermatomyositits, my legs got so weak my husband had to help me up when I would sit down. Thankfully, that didn’t last too long, but I wasn’t off the hook.
I was diagnosed with Hashimoto’s in December of last year and then with Dermatomyositis in April of this year. I didn’t start IVIG therapy until about mid-September and then on my third infusion, I had an Anaphylaxis Shock. My throat closed 1 minute after they started the IVIG, and I was given an epi-pen for the first time. That was by far the most traumatic event that has ever happened to me. Now, in a couple of weeks, I'm supposed to begin a new infusion called Rituxan. From what my doctor says it's much safer and has a better outcome. We’ll see. I know I’ll probably have a panic attack the whole time. Ugh.
Anyway, I’m glad to be here and read your stories. Feel free to get in touch.
This is beautiful – thank you for sharing 🙂
Hi Kelly, that was beautifully written…. I can totally relate to everything you said. It brought tears to my eyes. I have IBM {Inclusion Body Myositis} And I also have Hashimotos as well. I too feel like a different person today… I cannot do things I used to either. I still cant come to terms with being this way either…. I have a loving, supportive, amazing husband and a very supportive family and extended family. I feel very lucky to have that. Thank you for pouring your heart out to everyone.
certainly speaks to the strength of those that ARE going this alone.
It really does, Anne!
@cajungirl4life Once you again, you nailed it. It’s wonderful you have such a loving and caring husband who stands beside you. That is so important. Thanks for your honesty in sharing your experiences.