Friday night we enjoyed a few oysters on the half shell (i looooove them) and prepared to begin the immune suppressant dance again. Saturday morning, the regiment began. Yes, the new drug is underway, and I take a tiny little capsule 3x per day, spaced out to roughly 7-8 hrs in between. This is to help prevent overwhelming the kidneys. Don't want to do that!
The boring part now, is waiting the 3-4 months that we expect are needed, before the drug ramps up in my body. When speaking to Mom on Mother's day, she asked me how I was feeling on the drugs, and my response was that after 3 pills, I've only lost my left ear, the right is still hanging on. JUST joking Mom, and thanks for laughing with us. All is fine, my body realizes there is new medication and is adjusting as expected. Now, we avoid those who are sick and germy, raw fish, grapefruit, etc. ..and we wait...
In the mean time, pheresis continues at 3x week. Symptoms are SO much better today than they were last week. Its awesome! They are not clearing entirely, but I can eat, and honestly that's all I care about. Vision remains double in my right eye, but its trying to straighten out...trying really hard.
That's all for now, just wanted to pop in and report on the new medication. ..and now we wait..
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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.