It would seem that I need to begin using the voice memo recorder on my phone, as I have these 'brilliant' ideas during the week, that I intend to share with you, fully trusting myself that I will not forget the topic this time , and when time is allotted to sit down and chat with you, well, I've forgotten of course.
This has been a good week. It is now 8.5 weeks since the last pheresis treatment, and 9.5 weeks since the last infusion, and I'll be bold and say 10.5 weeks since the last symptoms were noticeable. Good numbers! We continue to decrease the Prednisone and look forward to that wrapping up in a couple of months. So all in all, I'm doing great!
Comparing where we have been, and where we are now, I am a *very* happy camper. It feels like we've reach a plateau. What a climb, and what do we do now? I promise it wont be sit still and wait. No more waiting to see what MG or MS will serve up next. Our MG support group is taking part in the MDA's annual fundraising celebration in 2 weeks (Muscle Walk), Lee is training to ride in the MS 150 coming up in April (150 miles, Houston to Austin, 2-days!), and just after this, we'll travel to Las Vegas to take part in the annual Myasthenia Gravis Foundation of America conference. We keep busy!
We rest too, and we give thanks for the blessings we've received through all of this poo. The list o blessings is long, and ever growing. For example, I'm blessed to have just watched that big ole sun rise again, and that 8.5 is more than just my shoe size!
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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.