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Before going into the homework assignment given me by Dr O today, I wanted to report on two on-going issues. The first is the Disney trip. After I told Lynnie about the trip for the first time today, she was dubious about the whole idea of my going and when she heard that not only were we all sharing a room but that I was to share a bed with Karen, she became adamant that the trip could become destabilizing even dangerous to me unless I had my own room. Even then she would worry, she said. She told Joe and Karen how we had traveled, she, Sal, (her fiance) and I, during the book tour, with their insistence that I always have a room to myself, how they turned down any engagement that wouldn't accommodate that need. They knew that I needed space to myself and a place to disengage and get away from too much stimulation. As a matter of safety as well as sanity. And she explained how paranoia triggered by fatigue and misinterpretation of harmless laughter could snowball into a meltdown unless I had a place to go to decompress and calm down and try to figure out what was going on...Anyhow, they got the point, and since they still wanted me to go, and I really do want to accompany them after all (for reasons that will become clearer soon) Joe said he would pay significantly more for me to have an adjoining but separate room to myself. Also I won't have a meal plan but a la carte meals so that I can more freely choose what I want or don't want to eat each day, without worrying about huge meals and wasting food. Our first "event" on the second day, the day after we arrive, is to go "Soaring" at Epcot center...I plan to report on the experience here that evening, if I have the energy and time.
The second issue is, oh damn, this is so old and tired, but I might as well admit it: my weight, at 91 lbs. Obviously I'm not eating enough, though I feel like I sometimes eat all day long. Other days, it is true that I forget to eat most of the day, but not always! However, risking the condemnation of a diagnosis, I will briefly admit that my standards constantly lower as my weight falls. Where once my lower limit was 95lbs, at which point I swore I would "do" something about it, now it is 89lbs, when I promise myself I will reverse this trend and eat like crazy and gain a few pounds. But I suspect I know what would happen, were I to reach that weight by accident: 87lbs would suddenly become the now verboten lower limit! 87lbs would be the new weight under which I could not allow myself to fall, until I did, and then a new standard would form...And you see how it happens? All without any intention. (What is strange is that I had been certain, until I weighed myself as I do once a month, that I had gained weight and was back up to 105lbs! So much for knowing my own body...)
I just came back from Joe's apartment, where I'd been waiting to put water in his feeding tube to finish the procedure for the night. The bipap alarm kept ringing and ringing, sometimes for many minutes and sometimes only once before shutting off. This has been happening regularly recently. Apparently it went off and on much of the night at the Clinic when Karen and Joe were last up there. When the bipap machine senses that Joe is not breathing, the alarm sounds. This is meant to wake Joe even if only subliminally so as to make him take a breath, which then triggers the machine to shut off the alarm.
The fact that the alarm was not shutting off could mean one, that he was continuing not to breathe on his own, or two, as he says, his inhalations, such as they are, are too weak to trigger the machine to actually turn off, even though he does respond to the alarm and take a breath. I don't know exactly what the second means, but it certainly sounds more hopeful than the first, or did, until I saw Dr O. She read the log I keep of my week and immediately came to one conclusion: he could die at any time. This shocks me, though I suspected as much. I just hadn't heard anyone who knows something about it actually say it outright. If this is so, then it seems to me the Clinic ought to be talking to Joe right now about needing a ventilator in the near future, not waiting and waiting and not mentioning it...It seems as if they simply are waiting for him to die and won't even discuss it before it is too late! The respiratory therapist thought he should be using the BiPAP machine during the day to rest his muscles, but no, no one mentions that either. I swear, I dunno that the Clinic is all that great after all. They only go there because it is famous, for other reasons, and Karen was a patient there for years. But their ALS program is only a year old in terms of accreditation, while our local one, yes we have one only a few miles away right here in town, is ancient by comparison.
Which brings me to my homework assignment. I am to organize in three columns or three boxes a list of any issues, worries, questions etc about Joe, his healthcare, his future. They should be placed in one the three according to whether a) I can do something about it now or soon b) it is something I can work at over time, or c) it is something I have no control over.
Posted by pamwagg at April 25, 2007 09:35 PM
Well, I'm going to quit writing this here and after I get my manuscript of poetry packaged and addressed to U of Iowa I will sit down and do my homework. Later on in the week, when things start to calm down, I'll get back to you. Tomorrow I will be frazzled and not likely to be able to write yet again, what with seeing the Levines in the morning through the afternoon as usual, then getting blood drawn, and a Sun Magazine writers' group I joined recently in the evening I might cop out and not go to that one...too much to do and too little time. Then again, maybe I'll go once and see what it's like. Who knows? I'll have to decide at the last minute I guess. That's sometimes -- often -- the best I can do.