Sitting in spin class, gearing up for this week. What a week it will be!
This weekend we were in the Houston area. Saturday we took part in the first annual Myasthenia Gravis conference in Houston, at the Methodist Hospital. This is the same hospital we visited early in the diagnosis process, when ruling out ALS. This is also where we came to know Dr. Appel, who is a fixture in the neurology world. The conference was great, and very well attended, so much so, there will be a second annual event, and a larger facility will be reserved next year! AWESOME!! The more we collect as a group of MGers and Caregivers, the louder our voice will be. Then, on Sunday, we celebrated Lee's Grandaddy. Tuesday is his 90th birthday! What an awesome milestone to be able to share in, and with all of the family, and Grandaddy looked great!
I'm feeling very well! I'm hopeful we are noticing the benefits of Prograf. It has been a month since I pulled the tape off my glasses, and aside from weak speech and swallow later in the day, you would hardly know anything was going on. One month without double vision...wow...and this has been a busy month! November will slow down and I think we'll tinker with the pheresis schedule then. Maybe...just maybe I can step down to 2x a week, rather than 3x....who knows, we'll see.
Daily injections continue, and we're in the swing of it all now. Will check in with MS nurse to confirm we're doing everything correctly, but it seems to be minimal work; just an aggravation.
Thank you God for bringing us to this point of rest, of less physical stress, and fewer surprises. May we find comfort in this time and be recharged and ready for anything that may come our way next. Many of you are dealing with your own health issues, and will be managing surgeries in November. You are in my prayers too!
Thank you friends and family for reading along in our journeys. If nothing else, I've learned thus far that we are meant to share our lives with others, and to learn from each other. You've taught me a great deal...and I thank you for this.
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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.