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I saw the neurologist yesterday. Dr O made an appointment, which is the quickest way, at least in this area, to get in to see a specialist without a long, long wait, as I have discovered, though purely by accident. Anyhow, to get quickly to the point, I passed all tests with, I think, flying colors, or at least the myasthenia ones, as he pretty much said he didn't think I fit that pattern. He did a complete exam and EMG -- electro-myelogram, where he applied electric current to certain nerves in the skeletal muscles and then needles into individual muscle fibers. All was in order, but he ordered specific bloodwork for next week sometime to rule MG out and check out other possibilities. Also, he wants me to have a brain MRI, but as the form says, not to look for MG but to rule out a "brain stem lesion." I am mystified...Today, I seemed to be able to see pretty much all day long, except for the last part of driving to and from the store, when I had a lot of trouble on the last few blocks home. But that was understandable, as I was sleepy and the road was hypnotizing me and I simply needed to get home and wake myself up or take a nap...which I did about five minutes later (got home safely by blasting right-wing talk radio until I was infuriated with their stupidity). Now, even at the computer, but after a nap, I am doing fine, no trouble seeing, though the computer is where it always shows up, or usually does. Maybe it does have to do with sleepiness after all, as Dr O suggested Wednesday. Wa,al, since I need the brain MRI for my Lyme doc, I might as well have it done, but now I feel foolish for all this fuss, since it doesn't seem like anything serious would come and go!
Anyhow, I am making jewelry like crazy these days, trying to do something special for all the women and girls in the family. I have taught myself a lot about wire: how to twist it with a drill and hammer it for strength or to flatten part of it, and how to make my own findings (earring wires and jump rings to connect components and clasps and such) . I have even made a few of my own metal beads just using wire and have learned how to enclose beads in wire a number of ways for a really nice dramatic effect. Joe and Gary are sick of hearing Karen and I discuss this hobby, as they would be, naturally. But it is all I do these days, whenever I am not writing or visiting Joe or Lynn, or eternally trying to read. I do not like the acquisitive side of the hobby, the fact that I have to keep buying supplies, which don't come cheap. And what does one do with the objects one produces? I can't give enough away...Too many people in this building of the elderly and disabled never do anything or go anywhere where they might wear jewelry, or think they don't. And I do not know but a few people and those not well enough to ask if they'd like to have a necklace or bracelet... I'd give them out as Christmas presents, but...Now that's a thought. Maybe I will ask the building manager to put up a sign offering FREE HANDMADE JEWELRY for anyone wanting a good Christmas present for a daughter or grandchild. I mean, what am I hanging onto it for? For the Flea Market in the spring? Why? TO make a few dollars, when all anyone would pay is maybe $5 a necklace, which is frankly insulting! I'd rather give them away...It's a hobby and an art unless and until it becomes a business, and the pleasure is in the making, not the selling. I think I've just answered my own question. As for the Flea, well, tengo mucho tiempo (I have plenty of time) in which to make more!
Joe's wheelchair from the ALS Association has arrived, but it was not outfitted for a ventilator and so is in the hospital shop being adapted and Joe has not yet had a chance to see or use it yet. I have not seen him yet since the Sunday after Thanksgiving...Too long, too long, but everything got in the way, other visitors took precedence over me, then my schedule prevented it, then the doctor's appointment...Sunday is my day and I plan to drive myself there, taking the highway...A first, but I have to do it, it's the only way I can get there in the time that it is possible for me to drive safely: under 15 minutes. If I take the back roads it takes 27 minutes, or more, which is simply too long, and puts me to sleep. The highway not only is shorter, it is more nervewracking which should give me additional adrenalin to rev me up and keep me alert as well.
Joe in general is doing quite well. Though he is gradually losing ground to his fundamental illness, his spirits are good and he is adapting to life in the hospital, beginning to become interested in the world again. His illness is no longer the only thing he will talk about, which is a good sign. I wish he could plan a bit ahead, and prepare for the future, in the sense that when we suggest he think about 1) purchasing a speech generating devise (SGD) that will be useful for when he cannot use his hands any longer or 2) practice using the Eyelink with us, the very very low tech way of spelling out words, without a computer or any other interface but a transparent plastic sheet with the alphabet on it, I wish he would DO so...But he refuses every time, and so we are left scrambling at the last moment, and he is left in desperate straits.
That's how it was with the feeding tube -- when he finally decided to use it, it was when he was desperate, and we didn't know how or what to do, nor did we have the proper equipment on hand. But he hadn't prepared for it, nor had he practiced as suggested, so we were scrambling, and he had to go hungry for two days as it could not be done, or done effectively enough. But Joe is Joe and I love him and deal with him the way he is.
Lynn, on the other hand, just gets weaker and weaker, and is clearly losing ground. Leila, her sister and also my friend, had to take her cigarettes away, She doles them out now, so she can monitor her smoking (though not limit it, god knows) because Lynn doesn't seem to understand that she is on oxygen and cannot light up when it is turned on or she will set herself on fire (to say the least) and possibly blow everyone else to kingdom come as well. She called me today to ask me to go over there and bring her cigarettes. I didn't understand why she needed any as I knew Leila had bought her 2 packs and I said she should ask Leila for them. She seemed reluctant to, and hung up with words that cut me to the heart, words that made me feel as if she thought finally even I had betrayed her. I quickly called Leila, who told me what had happened, and explained the situation.
At long last, Cy and Lynn are getting live-in help, name of Carrie, starting Monday and Leila and her partner Catherine, are leaving to stay with friends starting Wednesday. They plan to return for only two days a week from now until Jan 1, when they leave for Central America. Though they will be back in March, if Lynn lasts that long, I will miss them...I think she will survive at least through December as her son, Dan, is coming in January and that will give her a reason to live until he is here. But after that, I can't even predict. She wants to go, I understand that. But something is keeping her here, and I think it is Cy, her husband, who is desperately afraid of losing her, and who himself I think cannot survive her passing.
Odd, though, she seems almost angry to be alive, eager to die, which seems not quite right. Is she depressed? Why anger? Is that normal?I don't know about these things. I know her arm causes her great pain that is never resolved, no matter how much pain medication she takes. I understand that smoking is her only pleasure, and she does it alone now, without much solace or company, though I join her when I can out of sheer sympathy. But to die in anger, to die eagerly, that doesn't seem the way to go...It almost, in fact, seems to impede her dying, as if it so energizes to be angry, to be eager, that it gives her life-force and keeps her alive! Am I missing something here? Her memory is failing terribly, which I know is something that signaled the end last year when her sister died at the same age Lynn is now. I think Lynn expects to die, now, because June did then. But June did not have a husband like Cy to contend with nor his will to have her live. Perhaps that is why Lynn is so angry. I would like to ask her, and maybe if I have a chance, I will. I only hope her memory is bad enough that she forgets that I would not bring her cigarettes today. I fear, however, that that much will have stuck, smoking being one of those islands that is so important to her that she can remember everything that has to do with it.
Posted by pamwagg at November 30, 2007 06:03 PM
What will I do when she dies? What will I do? Oh, god, one down, two to go. Cy will be next and not long after. I don't know how long Joe will have. Perhaps if we are lucky, years. If not...