September 13, 2006

More on Joe; and on my eating problem

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'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


Good advice from Paula and Sue and Yaya--and I think it's also important to remember what Kate said once about loving your body. I won't try to reconstruct as I'm bound to get it not quite right, but I want to expound a little, too. You might love your body, perhaps, not as though it were in any way special or unique, but simply as a vulnerable, living, earthly thing, fragile in the way that all life on earth is fragile. And furthermore, instead of seeing food as something OTHER, or foreign to yourself, you might view it in much the same way--that is to say, TENDERLY.

Say, for instance, you have before you a pear, or an artichoke. Each of these is a creation of the most astonishing and temporal beauty: both are gorgeous; neither lasts. Whether you eat the pear or whether you do not its fate is essentially the same: ashes to ashes, dust to dust. Naturally, it's the same for you and me. As the kindred creatures that we are, then, it behooves us to appreciate the pear or the apple, the rolled oats, the slab of someone's side. None are alien; all can be accepted with gentle, humble, and very genuine regard.

Does any of this make sense? Very probably not, yet even so I cannot cease and desist without saying a word on behalf of corn! Having grown up in the Midwest I am well acquainted with corn; yes, acres and acres . . . I have spent time in cornfields, amidst the fine green hum of corn and grasshoppers; I have walked with my brother through rows of corn after the picker went through, pulling the missed ears out of the mud and the snow. If you do have to drink that Ensure, don't dwell on the way we've manipulated the grain for the sweetener, or whether there might be too much corn in the world; think instead of the real holiness of the living stalk.

Well! Enough of that! Please do care for yourself as lovingly as you do Joe, remembering that you are mutually blessed.


Posted by: Cynthia at September 14, 2006 08:57 PM

Hi Pam,

Ditto what Paula and Sue said.

I wanted to share with you some recipes I have for a quick and easy meal.

My daughter Cassie has been making smoothies for the family.

We buy fresh fruit such as peaches, mango's, papaya, pineapple and all the berries. Cassie peels the peaches and all the other fruits that need to be peeled. She then bags each fruit in a serving size and sticks it in the freezer.

Once the fruit is frozen solid, she mix and matches the fruit in a blender, adds skim milk, a splash of half and half and she also adds some protein powder. It makes for a delicious healthy quick meal.

Thanks again for the reading list and thank you ET for your recommendations, but Pam please do take care of yourself first. There are many times when I have to stop whatever I'm doing and take care of myself first.


Posted by: yaya at September 14, 2006 09:59 AM

Hi Pam, Paula is right in so many ways. You may be doing too much!! I know that you are passionate about writing, so if that is what you enjoy, maybe you should continue. BUT, if it cause unneccessary stress, then, by all means, don't write!! I wonder if the Oct engagement at the Hunt. Townhouse is too much for you too soon. With all the worries that you have for Joe and now yourself with your eating troubles.... I just wish that you could take it a little easy right now. You are such an unbelievably strong person. I do have to admit that I personally would be disappointed if you couldn't be there for the Oct Hunt. Townhouse presentation, but I'm sure I could catch your presentation another time if it's too much for you.

So sorry to hear that Joe feels that he may need that coughing machine...(is that what it was?). Hope he is wrong about that. I guess you'll find out soon.

Your meatball merlot recipe sound interesting. If you care to share it, I'd be interested. Take care, Pam and try to eat!!!! Thinking about you often, your friend, Sue Marasciulo

PS Matt is doing pretty good with his one college class. Thanks for cheering him on!!!

Posted by: sue marasciulo at September 13, 2006 09:56 PM

Dear Pam,
In your writing about the care and effort that you give willingly to help your Joe, who has been there for you so many times,it is clear to see that you are feeling overwhelmed. Joe is not your only worry. You have speaking engagements for which to prepare, your blog that must be written, not to mention doctors' visits and phone appointments. The key to an eating disorder, which is rooted in an attempt to move the focus of one's attention from the REAL and truly chaotic and problematic issues in life that we cannot contol, to something else(in your case, eating) which IS under your control. Right now, you have recently reentered the world after a serious psychotic episode which kept you hospitalized and under the contol of others for over a month. You are still far too fragile to handle the enormity of "shoulds" you are attempting to bear. When everything gets too big, it becomes so frightening that you must shrink all the unmanageables into one manageable, controllable issue that gives you a sense of feeling capable and successful. Inevitably,and I cannnot praise your courage enough, the "little" issue takes control of you and becomes even more frightening than everything else. The courage that I praise is your admitting to Dr. O. that you are out of control and you need help. Such an admission is a rarity indeed in the world of eating disorders. If you truly are willing to accept it, she will provide the help you need. A "Boost or Ensure Bandaid" will not suffice. I cannot utilise this forum to give any more of my layman's advise. You need professional help, you have requested it, and you will no longer have to bear this enormous burden alone. Everything, Joe's illness, your writng commitments et al were too much and too soon for you. It is a tribute to your inexhaustible strength of will that you have kept going this long. Joe will get help at the Lahey Clinic. Your readers have enough to do to last them for months. They have writing to practice, poems to analyse, and a plethora of interesting and challenging books to read. They can carry on without you for a while. YOU are the most important and necessary focus which deserves your undivided attention. Relax, close your eyes, let go of the musts and shoulds. Stop trying to carry the world on your shoulders. Even Atlas willingly turned his burden over to Hercules. Give yourself the opportunity to be treated and made strong and whole once more. Time heals all wounds. You did not have enough time to love and pamper yourself. I think I speak for the hundreds of people who so admire you when I say," Take all the time you need, Pam. We will always be here when you are ready to return."
With unconditional support and love,
Pesky, Perky, Twinnie 3, ET,AKA Your Paula

Posted by: Paula Kirkpatrick at September 13, 2006 08:45 PM

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