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Joe has been very tired these past few days and I don't know if he should be driving me to my doctor's appointment an hour away tomorrow. I may call to cancel or at least to have a phone appointment or insist that I can drive at least part of the way, so long as he "backseat drives" enough to keep me on my toes. I'm scared to drive, but more than that, I'm afraid that were I alone, I might fall asleep at the wheel. I think with Joe in the car I'll be all right, because we can talk and because I can always pull over and have him take the wheel. But I wouldn't dare do it all myself, not yet, not until I know I'm not too sleepy to do so.
I feel so terrible for Joe. He really wants to attend a technology negotiation seminar he signed up for for November in Cambridge, Ma but we are all afraid he won't be able to tolerate the time, that his stamina will flag so easily that he won't enjoy himself or last long enough to get anything out of the conference. Still, he may enjoy just going, just trying, and if so, that'll be enough. I really want to accompany them -- Karen and Joe -- but so far Joe won't let me, fearing that I can't take my medication on my own for four days and nights, which is utterly ridiculous. I've been on the road for the booktour longer than that! But so far, he won't budge...
We went to the pulmonologist the other day, did I write about this already? If so, forgive my repeating myself. He explained that a "soft diaphragm" which is what we've been told Joe has, is when the diaphragm doesn't remain flat along the bottom of the lungs and then pull downwards in an arc to allow the air to flow inward as one takes a breath. Instead, it simply stays where it is, or even bows upwards on inspiration, which is accomplished by the intercostal muscles (those between the ribs) and other chest and back muscles expanding the chest sideways and outward instead of downward. Dr FJ told me that Joe's diaphragm, when he watched it, still moved downward "slightly," which Joe heard as a good sign, but which I took as rather dire. When the diaphragm goes soft suddenly, you die within hours, but as the doctor explained, when it goes gradually, it is like slowly developing anemia, you can get used to it and live by breathing with the other muscles for a longer time. That was a relief, I have to say.
Also, the machines were delivered yesterday, the BiPAP assistive breathing machine, the suction machine for Joe's so far only occasional drooling and a cough machine called an In-Exsufflator. He tried using the BiPAP last night, but because it covers his mouth and nose completely, and he had to cough up phlegm several times during the night, he almost choked, and had to take it off finally. Too bad, because he used it during the day for a while and said it made him feel a lot better. No wonder, as it relieves him of the burden of too much carbon dioxide and allows him to take advantage of the oxygen that is already in the air that gets to his lungs. In other words, pure oxygen would NOT help, because the problem is that he can't get rid of the carbon dioxide, not that he can't get enough oxygen from air. He is getting plenty of oxygen into his lungs, but the carbon dioxide is sitting there, not allowing the oxygen to penetrate.
As for me, well, I have been quite upset by this, but also by the fact that everyone is angry with me, hates me in fact, everyone in the ALS association and at the Clinic, even though all I've done is ask questions on Joe's behalf and try to straighten out things that Joe is confused about. I was very polite and careful about who I e-mailed, I never talked to anyone in person or by phone, but somehow I did the wrong thing and now they hate me, for some reason I'll probably never be told! How do I know? I can tell from the e-mails I'm being sent, their tone, and the words they use...Even though Joe and Karen don't see it, I do. I know how they used to write me, and how differently they write now. It's obvious things have changed and that I'm the one they are blaming...So I go to bed crying, because I just tried to help Joe and now I don't know why they are blaming me and hating me, even though Joe is innocent, and they don't take it out on him, thank god. I just don't know what I did wrong!
Posted by pamwagg at October 3, 2006 07:47 PM
I hate myself! I should just stay away from everyone and not bother a soul! I always ruin everything and alienate everybody and eventually they all end up hating me anyway. I am simply poison to all and should have known better than to try personally to help Joe, when personally I can't do anything but hurt people, no matter how hard I try to do the opposite. That's what Satan does by nature: hurt people, do things that make people hate her (who doesn't hate Satan?). I poison people...So I should have anticipated that such would result from any effort of mine, whatever the intention. The road to hell is paved with good intentions after all, isn't that what they say? Next time I'll stay in the background and let Karen negotiate the system and find these things out, pushy as she is. At least she'll get answers, whether or not they'll be useful I can't say, but she'll get answers, and people won't wind up hating her guts or by extension being fed up with Joe. But there won't be a next time, will there? There is only one Joe and I've screwed things up for him enough. I'll just step aside now and hope their hatred for me doesn't affect his treatment.