Coming to you 'live' from spin class..or the human oil change...or treatment.. One week since we last chatted, and guess what? Its been a week full of symptoms. Thats what I get for trying to alter my treatments from 3x a week, to 2x a week. Lesson learned. I'm exhausted from tinkering with the silly mess.
We are just past the 3 month mark with the new drug, so I'm still hopeful this one will work. Hopeful, but not holding my breath. Right now, the pheresis is the one thing that works, and even though it can't prevent the occasional flare of symptoms, it does lessen the magnitude. This past week, I've been dealing with double vision, slow swallow, weak speech and fatigue..nothing new, but its exhausting. I thank God that I am surrounded by folks who understand whats going on and have patience to listen to my horrid speech during weeks like this. The lack of pressure takes such a weight off my shoulders. Ya know? When you can just be yourself, and people get it.
The one thing we haven't really tried is steroids, and we've been avoiding this option. We've not heard much positive about the effects of steroids, aside from the relief they can provide. This sounds odd, doesn't it? From fellow MGers and some of the Drs, I've heard the use of 'roids can really weaken your bones and your internal system/plumbing. This week, I hit the point of wanting the steroids now, but Lee is always able to calm me down, he knows I dont really want to choose this..yet. I dont feel the costs out weight the benefit. I was tired from not being able to eat, drink well, speak much, choking, and being hungry. I get mad when I can't eat...or talk :)
Today is day 5 of what I expect to be a 7 day cycle. Even that isn't always true, but again, I choose to be hopeful.
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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.