Hi Friend! I've missed you! Really...I have. Yes, I'm serious! I know, I know...me and serious aren't often paired. Its been a little while, so let's catch up. First and foremost, June is Myasthenia Gravis (MG) Awarness Month. Have you heard of MG? If you can simply pronounce the name of this disease, you are among a very small population. Thank you for joining us!!
Since we last chatted, I've been really good. I have no complaints! The steroids are doing their job, and I'm living pheresis-free. It would require a calendar, but it seems its been roughly 6 weeks without a plasma clean up? Can that be right? It has been 50 days of goodness. I DO know that. If you've been visiting with me over the past year, you know that in between MG flare ups, I began to count the good days. Emotionally, it is far better for me to count the good days, rather than how may days you're in a crisis. Focus your mind on where you want to be, and get there. Protect your thoughts!
Belly sleeping is in full effect! It has taken some time for the comfort level to return, but by golly, its back. I don't have to dodge water in the shower. I get to wear the seat belt rather than slide my arm out/over the belt. Today, I'm going to 'float' the river (i.e. lay in a tube, and lazily float down the river) and get wet!! No more nightmares about an accidental fall into a pool of water, knowing we must go to the ER right away for IV antibiotics. Its the little things...
I say that quickly, but now slow the thought down. It IS the little things. We will forever deal with MG. The disease and symptoms remain with me, but now, not living in a constant crisis mode, we are able to much more simply deal with the disease. We are learning to live life at a different pace. Declutter. Prioritize. Who knows how long I'll be steady? Everything could swing tomorrow, but until that time, I'm going to soak up the peace. Enjoy the quiet. Savor the flavor of every thing I can eat and not choke. Be still. Respect Day 51. Be excited for Day 52. Seriously.
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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.