Happy Thanksgiving! There is so much to be thankful for and the words are constantly spinning in my head. Do you find that sometimes the words really aren't there? ...There are no words. Sometimes you simply feel what you're thankful for, or maybe you know what you're thankful for, but can't find a word. I'm in that place this week. There really aren't words, but to know me, is to know this wont stop me from rambling right along.
Thank you, thank you to the handful of friends (and you are!) who nudged me along. "We last read you were taking a nap in the infusion room...did you wake up?". Yeppers, I did, and all went very well.
Four years ago today (2008), my first MG symptom came on the scene. Woke up, brushed my teeth and was unable to spit the toothpaste out because my tongue would not move (awkward - try it sometime). A few months later we received our diagnosis. Skip ahead two years (2010) around this same time, we learned of the MS diagnosis too! At this time in my disease process, we were relying on plasmapheresis multiple times in a week to halt the MG, and daily shots to slow the MS. One year ago (2011) around this same time, we began our journey with the last drug we knew to try, Rituxan. This year (2012), yesterday, I attempted...I mean we COMPLETED a 5mile fun run. Amen? Oh heck yeah!
We wogged (walk+jog) our 5 miles, but by golly, we finished! Yes, I slept through the 4th quarter of the football game last night, and it's ok. Yes, every muscle is sore today, and that's really ok because I'm reminded that they worked! Yes, I'll hit the wall later today, and that's ok too, because I'm still breathing!
Here's where the words are a bit lost for me. I have nothing but joy for the journey we've had these past 4 years. Would you wish it on anyone? No. Could it have been far worse? Yes!
Through this journey, I've met soooo many amazing, wonderful, kind, joyous, warm people, and many I now call friends. This journey immediately refined the relationship Lee and I have. This journey accelerated my appreciation for life and death. This journey showed me how easy it is to become vacuum packed in our own little worlds, so that we aren't aware of those around us and the burdens they bare. This journey strengthened my faith in GOD. This journey has shown me what beautiful, amazing, intricate creations we are, and that we are not simply understood, nor should we be. This journey has proven that not one person has the right solution, but that through many willing people with like focus, remedies can be found.
I could preach.
This week, I am thankful for so much, and to list it all would be a futile attempt, but the words keep scooting through my mind. In brief though, I'm thankful for my faith in God, for my family and friends who have been lock step, for a medical industry which I so highly respect, for a body that remains strong enough to fight, for a spirit that will not remain quiet, and for electronic mediums so that I can continue to share my lack of words. HA!!
Leftovers anyone? Lets eat!
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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.