Friday, April 30, 2010


I lay in bed last night and thought and thought about this. I don't know what to do. I'm not losing weight, but that's not the biggest deal... I will be able to get this together and exercise and so forth as soon as the semester is over. I think so, anyway. My hip is better than it was. I'll be ok... or I can be, anyway, if I can stop worrying about Michael.

He is gaining weight every day. He says he wants to lose weight, but he's not doing much that looks like it to me. The problem with the porphyria diagnosis is that it's given him latitude to say "I need more carbs." And to some extent, he does, truly. But he cannot eat this level of carbs and lose weight. It's how we started on all this. There's some balance... and some days, he's there with it, his head's into it. But more often than not, it isn't, and when it isn't, it's all about, what can I eat next? He's not ready to put real effort into this, and if he was just maintaining, I'd be ok will that. But he's not. He's gaining, and every pound is less mobility, and more important, it's a pound farther from being able to have that crucial PET scan.

I am trying to stay the hell out of it, because it does NOT help when I say anything. But I cannot bear to watch this. It depresses the hell out of me. And it makes it harder for me to take care of myself; the only way I can do it is to try to separate myself from him, and that's not good for anything.

Sometimes I feel like I'm building this invisible wall around myself, brick by transparent brick. It hurts. It keeps me safer. And it's all wrong.

Sunday, April 25, 2010

Where to go from here

I haven't posted in ages. Partly because I had the cold from hell for nearly two months straight, but more because I don't know where to go from here.

When I started this blog, years ago, Michael and I were on the low-carb journey. He was losing weight, I was at least maintaining, and it seemed like mostly a matter of patience and so on. Then he got sick, stayed sick, got sicker. And continued to lose weight, down to his low weight of 325. And I mostly maintained my weight, until recently.

But then everything got so much worse, so much scarier last fall. I gained weight again while he was in the hospital, partly because I just didn't have time to eat right, partly because I didn't have the will to do it, and partly because I was comfort eating like mad, burying my head in a book and all the food I could grab. And now, nearly six months later, I'm probably 40 lbs. heavier than I've been in a decade, with a hip that's killing me, and a lot of sadness and anger and frustration.

And Michael? Well, the good news is that in a certain way, he's a billion times better than he's been in years. Alert and lively and himself again. Which is wonderful. The bad news... he's also 100 lbs heavier than his lowest weight, somewhere around 425. The result of steroids during chemotherapy, plus not being able to eat a low carb diet, plus some odd metabolic things... but also because of depression and the lack of will to really work at the weight stuff, because it's hard, so hard, when everything else is so difficult.

I look at him, and I see his mobility decreasing and his weight rising by the day. I see the neuropathy from the chemo, and the joint pain from the excess weight and whatever other reasons... and it breaks my heart, but at the same time, I can't make him do anything. I only drive him crazy by worrying at him about it. He has to get to the right place.

But I can't wait for him. I have to figure out how to take care of me, and now. I have to change the way I'm doing things, how I feel about food, about nearly everything. I have to do this, or in a year, I'll be fatter and immobile and then what will happen? We can't afford to have both of us incapacitated.

I'm scared. And I feel very alone with this, because I can't talk to Michael about it without the other question hanging there... the "why aren't you doing something" question.

So I think I need to be back here. I think I need to rethink what I'm writing here, the focus... less about us, more about me. I can't do this alone. Well, I can do this alone, because I have to. But I'm hoping that some of you will be here with me.