Report from Dr. Cauli

Julia called Jim today with a message from Cauli that he reviewed my medicines, and said they were fine as is. WHAT GIVES?????? This is the amount I started out on three years ago before we changed to the extend tabs and IVIG. Am I to stay stagnant like this forever? I am not even staying stagnant; stagnating would be to die; I am going backwards. I guess I should be thankful for this nursing home. They will care for me in my MG decline, they will keep close check on my diabetes (good nurses: thank you Christa, Philyss, Sharon, Jessica, Emma, Christie, and oh the others I cannot think of all names right now, you are ALL great), and they will note my rectal ulcer with the bleeding, reporting it in the nurses' notes. Who reads the nurses' notes? Anyone? At least with my air mattress being put into today, I can say I am at least nice and comfortable. Phylis kept after dietary until they finally came to visit me and we worked out a plan for my diabetic diet. Not perfect, but SO much better. Erin, my wound care nurse looking after my thin, delecate skin, helping me get my much needed air mattress. The CNAs.....Certified Nursing Assistants (or Aides). I believe Patience is the primary virtue they must possess. Sure they must offer skilled nursing to us, very much like what I received in the hospital, but from my observation of their care of residents around me, they have to have a lot of patience. Wonder what the odds are that I would have a Sherika at the hospital and here, too? And, they are both good at what they do. Oh, I have just been so blessed with good nursing staff at both places.

I am keeping busy. There is still the Childhood Cancer awareness, and now this month of June is Myasthenia Gravis awareness. More on each later.

Some make fun of me here because of my *stuff* but I am set to start going through my photos, putting them into digital format. What do they expect me to do? Lay up here and rot? That's what I would do. Let them walk in my shoes. I have my faculties about me to be productive. It is only parts of my body that are out of sync. I see others that can do nothing but just lie there all day long. My heart goes out to them. One of them is my friend from school days. She is not able to do anything.

What would happen to me if I didn't have my *stuff*? Sleep? I could not get out and around right now because I cannot sit for long on my bottom, thanks to the ulcer. Just what would I do? I have done without things like photos and artwork for so long, that it is like Christmas to me whenever Jim brings something.

I am having trouble staying connected to the internet with the dial-up with my blackberry.....grrrrr, (dsl one of these days), so while I can, I think I had better upload this, but I will start another one as soon as this one is done.

Edit: This was posted at a later date than was written.