Its been a little while since I posted, and mainly because I feel really good!! It scares me to type that out loud. As I've commented before, getting cozy with comfort makes me nervous, but I am grateful none the less.
Nothing really new on the health front. We did have a follow up visit with the Dr in Dallas who specializes in MG-MuSK patients. This visit, we were welcomed with handshakes and a smile. I almost fell over! Maybe on the last visit, we were there before the coffee kicked in. Doesn't really matter, he's super smart and that's why we want to be there. We'll just smile at him regardless... ;)
Again, I seem to be a classic case (his words) and my symptoms are consistent with MuSK MGers (his words again). Its SO nice to be normal sometimes, despite my haminess. Is that a word? It is now. Dallas Dr didn't care much about the developing MS stuff, since this is not his area. He has known MGers who have had MS and treated accordingly. Still, we're focused on the MG for now.
This past week, many people have commented on my speech being 'more like Rachel' and my eyes being bright again. My chew and swallow are strong, which really means I'm talking a lot. I love it! ...that my symptoms are waning, not that I talk a lot. I'll be excited to see how long this spell will last. Maybe the meds are starting to work? Maybe the 2 weeks of 3 treatments made the difference? Maybe the awesomeness is taking over? Frank, thanks for agreeing with me!
Thanks for your fabulous emails/text/calls/etc. Each one is welcomes and appreciated! While we wait to meet again with Dr. Horvit in Austin, we move slow, take social media breaks (sorry Mom), plan a wedding, eat lots and sleep more.
I think we should all take a nap now.
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Smile because you can!
Life is such an amazing adventure! One day you're cruising along with certain expectations, a planned route, and plenty of gas in the tank. The next, you're not sure where you are on the map and your compass fell beind that comfy seat you were in.
Smile because you can!
About Me
- Rachel
- Austin, TX
- My name is Rachel, and I have a neuromuscular disease called Myasthenia Gravis. This crazy condition was bestowed upon me in late 2008, and has the ability to render your body weak and sometimes useless unless proper treatments are administered. I've learned so much, and I feel blessed I am able to share. I'm nervous to write, but have learned that I should. Maybe you'll take something away from my nonsense.