Ok, I'm having a day. All seats are taken at my pity party for one, no more room in here. No, no, I'm not having a pity party nor is this a cry for help. Just venting and whining, and trying to celebrate too.
We've had quite the month with the art show, MG awareness month, travel, weddings, etc. Lots of good stuff happening. Last week, was a very good week. My body felt strong, and in the 'cycle' that I feel I've identified, it was expected to be a good week. So, we tried doing only 2 treatments. In my highly trained scientific mind, I wanted to see how my body behaved 1.5 months in on the new meds, on 2 treatments, on a 'good week'. Not bad! This week, is expected to begin the rough weeks, and as of yesterday, the symptoms are starting to creep in. My voice has become weak, the swallow is slowing, my eyes feel stretched. However..its not as bad as I have seen it (no pun intended), at this same time, in months past. Hummm....maybe the meds are starting to help?
My head hurts due to the molds right now, so I'm not thinking very clearly, and sipping on soup frustrates me. So I'm wound up as it were, but I'm grasping at the good. I feel good! My body is strong, folks are telling me I have color in my cheeks again, I requested iron after treatment yesterday and this should help my energy, I'm still eating and dont see double.
In light of last week's post, I can't get around or away from this STUPID disease, so lets get into it, right? We've been distributing 'Awareness wristbands' all month, and I LOVE, LOVE, LOVE the response to them. We will see the Neuro tomorrow and report the good, the bad, and all of Momma's research...I mean, our research :). Since I'm working on my iron counts, we might be able to increase the Prograf dosage. Who knows...this is a walking science experiment..grab some popcorn and enjoy the show. All I know is that I really, really want to sit and pout right now because of the frustration, but things could be SO much worse.
Ok, thanks for the pep talk...I needed that. I'm going to finish my soup now and get back to work now.
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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.