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I spent the morning and early afternoon cooking homemade TV dinners to freeze for Joe so he'd have decent meals to eat when he didn't want to go out to eat (he does that a lot these days) or Karen, another friend, was unavailable to accompany him and he decided to stay in. I really hate to see him eat store bought TV dinners, full of chemicals and preservatives and who knows what else. Plus, he eats Lean Cuisine, which isn't anywhere near enough calories for a 5'11" guy who needs to maintain his weight, not lose.
I don't know how mothers do it for a family of say, six, since I made six servings exactly, no seconds available, and this purely by accident. But to make meatballs merlot (meatballs are easier for Joe to chew and swallow than unground beef) over noodles and honey-ginger glazed carrots took me 5 hours. I suppose I could whittle that time down with practice, but to have to cook every dinner 7 days a week and be creative? Well, I must say I have a brand new appreciation for my mother, who did that and also went to college and later on taught school.
Anyhow, while I made the dinners Joe came up to open the wine for me since I've never used a corkscrew and he sat down a while to watch as I cooked. He said he had been feeling exhausted these last few days, even though he had done a lot.
"Because you did a lot?" I asked. But he was lost in thought and didn't respond.
I tried again. "What have you been doing today? I haven't heard a peep from you."
"I've just been sitting in my recliner, or sleeping. I can't get enough rest. I'm too tired and--"
I waited, as he seemed ready to go on. But he said nothing so I prompted him. "Tired and?"
"Well, I've been wondering about a suction machine, you know, because I can't cough up this stuff in the back of my throat. My coughs aren't strong enough anymore"
My heart dove into the pocket of my stomach and trembled. My coughs aren't strong enough. I knew all about the suction machine to vacuum secretions out, I'd seen them when I worked as a transportation aide in a hospital when I was young. They had always scared me, especially their noise. But the statement My coughs aren't strong enough scared me even more. You need to push out a lot of air to cough, to raise your diaphragm high and fast in order to make the explosion of air that sounds the way a cough does. It's voluntary, even when it feels like it isn't. You choose to cough when your body is in distress and your brain sends a signal telling you that a cough is needed. But what if you can't raise your diaphragm quickly or high enough? You can't cough, or not effectively. That is what seems to me to be the problem here, though I grant you I am speculating again, and need to go back to my ALS notebooks and handbook and check this out.
But obviously what I'm worrying about is that Joe is already experiencing respiratory muscle weakness, before losing ANY other capacity completely, which would be a grave development. But I should not be worrying this much prematurely, because we'll know soon enough: he and Karen are sharing the drive to Boston, to the Lahey Clinic (sp?) where he has a follow-up appointment. There they'll be able to tell whether he has lost ground and if so in what areas and how much. They'll be able to discuss with him suction machines and breathing aids, should he need any.
I feel petty discussing my rather trivial problem after Joe's life or death one, but I suspect you'd want to hear about it, so here goes: I went to see my primary care physician (PCP) about something else, but the nurse wanted to weigh me first, I guess as a routine stat they get at every visit. I told her 101 was my usual, as I didn't look at the scale particularly (those slide kind are hard to read quickly) and she said, "Oh, no, you don't weigh 101. You weigh 97 pounds." Shocked I followed her into the examining room.
Back home after the exam, Dr O called for a scheduled telephone appointment and I told her about the exam and my weight. She seemed quite sympathetic, as usual, though as usual I feared she would be angry, and when I said, in no uncertain terms, "I've got a problem," she seemed relieved to hear me acknowledge it rather than say that I simply wanted to get down to a certain safe number.
We talked about the fact that despite my claims that my metabolism was screwed up, I had lost 3-4 pounds in a week, which was appropriate for the number of calories I was taking in. Most people on a diet lose maybe a half to one pound a week, or less once they hit a plateau. I know that my metabolism is not normal; I have never been able to eat like other people do without gaining weight. I've made my peace with that. But I don't feel good eating as little as I do, one, and I know I don't look good either, though that matters little to me, except insofar as I do not want to be conspicuous.
But what to do, what to do? Both the nurses and Dr O are going to make me drink Ensure or Boost if I can't eat more and those are all high fructose corn syrup (HFCS) as the first and highest ingredient! HFCS is the worst substance we have ever devised and accounts for the epidemic of obesity in the US as well as for the huge increase of cases of diabetes type II. It is in EVERYTHING from bread to soda and in every processed food you can think of...Just look at the ingredients and you'll see it. And sometimes you don't, because it has been broken down into component molecules and those have been used instead! This is all because of our corn glut, and the subsidies that encourage farmers to plant and grow ONLY corn, vast acres of corn, row upon row. If we subsidized a variety of vegetables, as we should, we'd get a variety, but no, we don't think like that.
But end of sermon, and back to Boost or Ensure: aside from the HFCS I don't know where its protein comes from, soy probably, and its vitamins, not from natural sources you can bet your socks on that. So it's a can of corn sugar doctored with chemicals and soy (the other huge cash crop besides corn). Now why would I want to drink that for 350 calories when I could make a "Paula shake" in the blender or eat the food equivalent? Yet it strikes me as easier to drink a premade supplement that I don't have to prepare, because I don't have to do anything but drink it...This from someone who cooked Joe beef meatball merlot today???? I know, I know. But did I eat any of it?
I think if I tried the supplements for a few days and got the 700 calories down, then I might decide I would prefer to eat them than drink them...it'd be a way to start, I think. But would I even drink the 2 cans a day, Ay, there's the rub, as one of Shakespeare's characters said to another (sorry Paula, that's as close as I could come!). I have to try something, I cannot keep losing or I'll end up back in the hospital. I have speaking to do in October and this blog to write and Joe, who needs me, and so many reasons to stay away from that place that I'm gonna fight like hell to stay OUT. As Paula has acknowledged, I need to control something, and if I can I will control this too.Posted by pamwagg at September 13, 2006 06:10 PM