Hey their neighbors! I feel ashamed that my blogginess has slowed, while things have been better. However knowing many of you, if not hearing from me means we're on a good path, then we're all ok with this.
Things are still going well, no complaints! My symptoms are very minimal compared to where we've been. Each night, my mouth slows down, and I'm starting to take this as a divine sign...to hush. :) My vision has been stable, my fatigue minimal, and most everything dissipates with sleep/rest. This is manageable!! I've begun to say it out loud, that the increase in dosage of Prograf, has really made a difference. We visit the Dallas Neuro in a few weeks, and our Austin Neuro indicates that another increase in dosage is expected. We'll see.
I am experimenting with pheresis treatments this month. Because I am strong, and because the stability has lasted more than a month, I'm ready to see what happens when we try 2 treatments this week. We'll do 3 next week, and 2 the week following. The only way to see if the medicine is really making a difference, is to start weening myself away from plasmapheresis. Wow, wouldn't THAT be a blessing??? In the mean time, we just keep on, keeping on!
The MS seems to be fine, although its still not super clear to me what I should be looking for. Aside from some funky vision stuff, which the Neuro says sound more like migraines than the initial MS symptom, all has been quiet. We maintain our daily injection routine. Ug. ..but it could be worse. It has been worse.
So many of you are dealing with great health hurdles this month, and I lift you up in prayer, as you have done for me. Without naming you all, know that you are my prayer list, which is taped to my laptop. Rather use tape for something good like that, than on my glasses. :)
Love you all
Rach
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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.