Monday, March 3, 2008

Excuses, excuses, excuses

Why the skipped days? Well, first one thing and then another. Do you want to hear them all? Ummm. A key broke off of my laptop keyboard. That is a good one isn't it? Darling Daughter Debbie, first baby girl in the family, went to Wal-Mart and got me one. Life was wonderful. I looked at the instruction booklet, and at the picture of all that was supplied. USB receiver. Four AAA bateries. Looking all around me. Oh. There are the batteries. That's good because the only AAA batteries are the ones for my pump. Now the USB receiver. Maybe it slid beneath the covers. Lookie, lookie. Movie, movie. I move everything from the area where I found the batteries. Nothing. I almost cry. I was waiting, all ready to write away. Had an idea in my head. The longer I looked, the more of it seeped away. No use. It was evident I was not going to find it in a reasonable amount of time, so I just gave up, and went to the newsgroups to read.

Sunday morning. Jim joins my hunt. He agrees. Not on the bed. Could that little thing have dropped down the side against the wall? I don't think very likely, but he, bless his sweet heart, gets down on the floor, under the bed, and looks to his heart's content, and more, but comes out shaking his head. "No, my darling Poopsie, dear. I am so sorry to tell you, it is not under there either. I'm wondering if it was even in there to begin with," and I mentioned the box was sealed, and a part missing wasn't too likely, and we were just overlooking it. But where in the world? With me sitting in my rocking chair, him just moseying around, he picked up the box it came in. Hand your head in shame. "Here it is right here." There was a deep indentation where the batteries had been, and I thought the receiver had probably been in there also, but no, beside it, in a shallower indent in the top of the moled plastic container which had held the mouse was . . . . yep! You guessed it! The one and only, the much needed Kensington USB receiver!

Now I could get started! Batteries were in the mouse and the keyboard, thanks to my sweetie, so all I had to do was plug in the receiver, and run the CD. USB----->>>USB "USB device not recognized..." aaarrgghh! Pay no attention, Billie, and go on as if you had never seen that. For some reason, either the CD, or some quirk, my computer restarted. Well shut my mouth! Look at that mouse moving that cursor all over my monitor. Does that mean the keyboard - which iss the purpose of all of this - work, too? Easy now . . . check out the key that is broken on the laptop first, the Shift key - - - - it WORKS! We're in business!! Or were we?

By the time I get all settled in bed, laptop and new keyboard in place, can I find those thoughts I had running through my head the day before when I was hunky dory okay , , you know . . . normal? Well, what is normal for me at least. This MG, it is up and down, seesaw, back and forth . . . I think of the seesaw on Beech Crest play ground, up and down, and what a jolt it would give if the other girl (no boys on the girls' playground) would get off suddenly without warning. Outch, a quick, hard fall to the ground! I talked to Jim about it, a good day, a bad day, on and on especially with the bad days lasting longer than the good days. He said it's just the disease. Why is everything "just the disease?" I am here because when I got all set to write, though I had gotten a bit written (a paragraph is *quite a bit* isn't it?), I was just so exhausted. Was I going to be jolted like a seesaw? Was the commotion, stress, excitement, etc., going to result in an MG downer? A bummer? Looked like that was coming. Blah. No inspiraton. Sleep. It was so easy. Just lay my head back, and it blissfully comes. For hours.

From then until now. Nothing worked right. Nothing cooperated. Yeah, I said excuses, but I really have tried. I have given it my all I have worked, thinking and typing, myself into that world right now, and have to quit. This is the MG world. The eyes are suddenly gone. The fingers lack coordination. No energy. Weak. Sleepy.

Something for pain, and a bit of a rest later, and I am a little renewed, but not feeling very sharp. I cannot remember what transpired from the earlier accounting, and to now to cause me to miss publishing on my schedule. I do know that I fell asleep at least a couple of times for as much as three hours during the day, and I found a new newsgroup that I got caught up in reading: alt.cancer.prostate, and found it very informative and helpful learning about the differences involved in the aftercare of surgery.

One thing that has been happening the past few days that is totally out of character, never happened before, and that is I've been forgetting to take my Mestinon. The first time I forgot it entirely, the 60 mg, and all of the 180 mg tablets until aaround midnight, and I took a 180 mg then. Then the next morning I took the 60 mg after forgetting it at first, but then forgot the 180 mg tablets until the middle of the afternoon. This pattern kept persisting, and is still threatening each day. In fact, writing this reminded me that I had failed to take my night time 180 mg (it is 3:50 a.m.). This could be accounting for my weakness. I had not thought about that. I have been giving myself insulin shots because I have felt too weak to refil my pump. It really is an indescribeable weakness, and then there is the muscle pain that goes along with it.

Today, my muscles have hurt less, except for my upper left arm, and it is the main problem tonight; the right one is less significant. The muscle pain is not primarily due to the MG, rather secondary. For instance, my back. My back pain when sitting up is from the muscles having to hold myself erect, not from the MG which is a communication problem between the nerves and muscles. Why do the muscles hurt when they have to be used? I don't know. The same is with my neck. We have determined that a neck collar does help the pain, but I need one more fitted to my neck. The Small, Medium, or Large size (I tried a Medium) does not work. It is too deep, and rubs my chin raw. I wondered if you could get them in fitted sizes.

Now with a stubborn Firefox on my hands, I'm going to offer one more excuse, and quickly publish this before it crashes on me once more. No. It is not an excuse.

Striving for a world without Myasthenia Gravis

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