It has been a month since we last chatted, time flies! Honestly, we've been chatting in my head for many weeks now, with the various topics that I want to share. Then I talk myself out of blogging. Lots of self talk going on, about anything, something and nothing. Yes, all of that...in my head...scary. I willingly admit there is a real-life 'Bing' commercial going on in my noggin. Did I mention scary?
In the past month, I've had a short spell of double vision, some slow swallow and fatigue, and then a few plasma treatments to catch me back up from my experiment with coming down off steroids. Yes, I was working with the Dr. on that experiment, and he didn't really want to do this. At least we know now, how much work the immunesuppressant is helping (or not), and how much the steroids are supporting me. More and more it seems immunesuppressants are not able to do for me, what we had hoped they would. Ok, I wave the flag of surrender...Steroids it is....for now. Hopefully we can remain at the minimal dosage, and not need to increase! Hopefully my body will play nice and not require plasmapheresis! Hopefully after a month pheresis-free Catheter #4 can come out! Who knows?
We visit our specialist in Dallas next week, and expect he will agree, that we may be able to drop the immunesuppressant and try balancing on steroids for a while. Well, thats my next planned experiment, and I'm hoping he has the same great idea... :)
This Myasthenia stuff is a real pain in the butt...This is why MG is referred to as a snowflake disease, where no two people experience the disease in the same way. I suppose if MG were easy, I would become bored quickly and find something else to tinker with. Probably safer for everyone that I'm pre-occupied with me and the gazillion discussion about anything, in my head. I think God made me my own entertainment/babysitter. "Ah-ha!" Time to go add leaded coffee to the mix...
Have a great day!
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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.