Monday, January 7, 2008

A full day's worth

We had to call and reschedule the two appointments for today. Yes, I could have pushed myself and made it. Neither appointment was critical, though. The most important thing with Myasthenia is Rest. That is the hardest thing for me to do. I have done real good lately getting my good rest as I am supposed to do. So, it did not make sense to me to push myself to make that trip, and possibly set myself backwards. It was also raining. The decision was made to stay home and reschedule. I ended up sleeping the entire morning. Good rest. As I slept I could smell the vegetables Jim was cooking for lunch; after lunch I relaxed in the rocking chair until I got up to start this. I *do* feel better than last night or this morning. Only my arms feel like the calves of my legs.

No tremors thank goodness. Hmmmm..... let's see..... I *think* I might can say that the tremors *do* get better with rest. Does that mean they are Myasthenia related? Something to keep up with. They also get better with 0.5 mg of Xanax, and are not associated with any kind of emotional distress. They seem to be located more in my right arm, hand, and fingers, with my hand taking flight of it own volition sometimes.

No headache of any kind! Hooray! Now it is about time to go for the next IVIg, and get the headaches started all over again. Arggg!

This is *MY* Myasthenia! How often......how quickly it changes on me.




Ashley and Ashton are here.

I held the sweet baby for a while, but had to give him back to his mommy. Phooey on these weak arms. It was close to his nap time though, and he went to sleep on a pallet beside my bed. While on the pallet he started going for his toy, and pushed himself with his knees. His first time at an all out crawling effort, going for that toy. Ashley and I were cheering him on!


The day has been a good one, with some strength restored. Jim and I noted my walking steadier tonight. MG is a very strange disease. Oh, I just tried to explain how the nerves cannot get their message to the muscle receptors, and it got so mumble jumbled, I erased it. But, that is it in a nutshell. The muscles simply do not get their message from the nerves, (the antibodies are at play in there) and thus when I try to use them, they........... well, they're just plain dumb, and stay as they are.

The basic principle of the broken message is there, it is just the whys and wherefores that are missing. Research, research, research.......... so much is needed. The Muscular Dystrophy Association does research on Myasthenia Gravis. There are some foundations
, Myasthenia Gravis Foundation of America is one. But MG is a *small* disease, not garnering the large ........ well, my mind has just, left me, a common occurrence when I get tired, which I am right now. ;-). What I mean is on the tip of my tongue, and will come to me. Later, but I'll leave that much there because you will probably know what I was trying to say.

Coming public with my IVIg treatment and my life with MG is my way of making this rare disease more noted. Nothing here is scientific; it's just my life with the disease, and trial treatments, trying to find what works for me. I was just looking at some different web sites on MG, and they said with the right treatment you can lead a normal life. That is what I read just after my diagnosis, and I thought, "Hey, no problem, we'll just treat this, and go our merry way." Not so! So far, we have not been able to find a treatment that works for me. Many doctors never see a case in their lifetime of practice. We myasthenics learn from each other in email groups, and forums.

Of interest to me:
Myasthenia Gravis Foundation of America
Non-Hodgkin Lymphoma
Prostate Cancer
Breast Cancer

In the news tonight from our home town of Helena-West Helena, Arkansas, the Obituary of Mrs. Harold Chorley, Jim and my ninth grade English teacher back in the 50s. A most outstanding lady, loved by so many. I'm so glad I got to see her a few years ago for my 45th class reunion.


Goodnight

2 comments:

Alex said...

hey ragdoll thansk for checking out my site. I'm glad to here your living your life they way you are. I here so many that give up. I'm trying not to. I'm really trying not to. after all I can still live a wonderful life with or without my sight, with or without my hearing, with or without my footdrag. I can do it! and no ones going to stop me! and It doesn't look like there stopping you anytime soon. Good luck hoping for remission you'll be in my prayers.

Alex

ragdoll said...

Alex, I read your post today; your first day back at school. I'm really proud of you! I'm going to link back here to your blog if it is okay with you. Like me, I think you need and want some friends and supporters, right? Some days are easy, some are hard. On the hard days, maybe you can remember your Internet friends; they help. BTW, I LOVE to swim!! Wish I had a pool handy, but without usable legs........... :(

Have a good day
Ragdoll Billie
http://andlifegoesononedayonestepatatime.blogspot.com/


Striving for a world without Myasthenia Gravis
http://d21c.com/CrossStitcher/MyastheniaGravis.html