Tuesday, March 24, 2009

My purpose

The purpose of my blog is to keep up daily with my Myasthenia Gravis, the medications with the IVIGs I am taking every four weeks, and the ups and downs, the good days and the bad days. I don't like to talk about the bad days. I think I could prevent the bad days. Like when I had to say I couldn't finish the IVIG, I've always pushed to the finish no matter how badly I felt; it is THAT important to me. That was a first for me. I don't know exactly how I felt, but that it was pretty awful. At one point Jim had to drive my chair. We had to go by the nurses station for them to take my arm band off, and they couldn't believe how I looked. I had not been in that day; I had a line in and they had to remove it before we could leave to go home. I really wish Jim was here to tell about it all but he would say he forgot. ;) that's okay, for there are some things you just might just rather forget about, right. I really do need him to remember enough to tell Dr. Cauli. I don't remember driving home (1 hour), just Jim preparing everything for getting me straight in to bed. I remember the good fresh smell of my bed and my box of Puffs on it. . . light blue. Jim is so tender and sweet when he is taking care of me like that. There is so much to do, but he always is putting me first. Like when we go home. He told me to wait. Let him empty the expidition. Then when there is nothing more to do, then for me to come in. That's one thing about it. . . he knows how to drive the chair, and that time had finally come! Together up those ramps we flew! I thought the building might be coming down.

You know, I don't remember much myself of the week after we got home and I was going to ask Jim about it. Then I got even sicker. I do not know how many years it has been since I have vomited, but yesterday was the first day I've been able to put down a normal meal since before the weekend, and that may not be correct I've had a very bad UTI which that and something else caused me extreme pain. It's just been awful. I know. I sound like I'm griping and complaining, but what have I said months ago. I don't like to talk about yet here I am because I also said I'd talk about the rocks in the road, too. Well, this last week, someone threw some rocks in the road right at me, making a direct hit. I can tell I've had an episode pluse been otherwise sick, too. My arm muscles are kaput. I can just barely press the keys on the keyboard.

So far we do not have the port-a-cath working. That means LOTS of sticks each IVIG-5 days. The veins just go caphooey. How have we managed? With a peripheral venous line. I wear it home with me each night. We have our first line put in on Monday, and pray it holds. Sometimes, it doesn't even hold while she is stick it just blows right away. Two, and sometimes three are not unusual. It is treated exactly like the port, we shut it off at night, open it the next morning. I hope you can see it. I try to take pictures of things that might be useful. Wakeup! It's time to access the line. Hopefully. From the first morning on, it has never opened. It eveidenly clogs sitting there through the night. No answer. New stick. Every morning routine. I'm going to talk this over with Julia next month, April (can you believe?). Here I am. Can't do anything about my port, my veins don't work. Is that what they call being between a rock and a hard place. Ha, got rocks all around me don't I?

I know what I'll do. I think I'm going to stop for now. Just keeping on will just make things worse for me. I'm praying for things to pick up for me. It seems like that is the direction all is going. Here is where I live. I found some friends for Ragdoll, so be watching for them one of these days. Remember what I said that ragdolls like friends, too. Pssst, look down there at Ragdoll. Think she'd like to have some eggs, too? Think I should ask for some for her? Jim's a great cook. She's been here with me all night long, and I bet she's as hungry as I am.

I'm sorry, but I am unable to check for errors, and I hope the font I chose is there througout, but I cannot see well enough to read my post. Please enjoy, that's more important.

No comments: