It's been a really tedious day... ALL day sitting at the car dealership waiting for tons of things to be done to the car... about 10 a.m. to 6 p.m. Michael came with me, which was sweet but unnecessary, really. And we sat, and drank coffee, and did computer things, and chatted with an interesting and nice guy who used to work for Microsoft and just happened to break down near here, and listened to an endless conversation about duplicate bridge... and I like bridge, but eek... and all and all, it went on too long.
But I had lots of time to think. This is what I've been randomly thinking about lately: who do I want to be? And shouldn't I know that by now?
My almost-16 year old niece was here a couple of weeks ago, and I took her to the spa, and we had our toes done, and some other things, and then we went to the mall, and I bought her some clothes, and then we went to Sephora, the make-up/perfume place. And she said, "I'm the kind of person who wears a different perfume every day." I thought... (1) I've always been the kind of person who wears a single, signature perfume, and (2) maybe I'd like to be the kind of person who wears a different perfume every day? And then I thought, ok, this is a trivial thing, but this kid knows more about who she is and who she wants to be than I do, and I'm more than three times her age. And then I thought... sometimes this seems like everything that's wrong with my life, this not knowing what I want to be, or how to be it. Wrapping myself around the latest thing that attracts me. Finding my own identity in these things.
This bothers me, and leaves me uncertain, and makes me wonder when, if ever, I'll get to be who I really am... not the person that the people around me shape me into. Because I am not loving that person all that much these days....
Wednesday, July 7, 2010
Tuesday, July 6, 2010
Melting
The Northeast heat wave continues... 93 at the moment, and humid, and really, really tiresome. I just don't want to do anything. Trying to plod along getting something done. Mostly just knitting and watching stupid TV on Hulu in lieu of actually moving and sweating.
Michael's porphyria attack is worse today... bad neuropathy yesterday, and he woke up this morning and seriously didn't recognize me for a moment. This is scary, really scary. Shades of his last hospitalizations, plus a sign that the neurological symptoms are worsening. And his weight was up, despite having a reasonable food day yesterday. So... we see the doctor as planned on Thursday, and push hard for the Mayo referral, see what we can do to get that in the works. I don't know what else to do.
It's all pretty tiresome. I was thinking yesterday... the greatest truth, in a lot of ways, is that youth is wasted on the young. I've been watching the past series of Greek... if you haven't watched this, it's a pretty formulaic but sort of charming ABC series on fraternity/sorority life at an Ohio university. And I will never, ever admit to enjoying this kind of show.... but ok, I do; it's a weird guilty pleasure. But it's also my childhood and my college days, in a way, or what they might have been if I'd known what I had when I had it. I remember back to that time, and it was so... carefree, although I would never have thought it at the time. That self-absorption of youth, and all the things that hadn't happened yet, and the future holding limitless possibility. And one day, you wake up, and the horizons aren't like that any more, and people around you are aging and dying, and everything is about health and problems and worries. We ought to live backwards, like Benjamin Button (not that I either read the story or saw the movie), living in reverse, having things become better rather than cruelly worse. Yeah, I know, it's all a little melodramatic... but it's hard to keep putting a positive spin on things. Yes, they are better than they were a year ago. But it's a long, long way to something that feels like a normal life.
And I so long for that.
Michael's porphyria attack is worse today... bad neuropathy yesterday, and he woke up this morning and seriously didn't recognize me for a moment. This is scary, really scary. Shades of his last hospitalizations, plus a sign that the neurological symptoms are worsening. And his weight was up, despite having a reasonable food day yesterday. So... we see the doctor as planned on Thursday, and push hard for the Mayo referral, see what we can do to get that in the works. I don't know what else to do.
It's all pretty tiresome. I was thinking yesterday... the greatest truth, in a lot of ways, is that youth is wasted on the young. I've been watching the past series of Greek... if you haven't watched this, it's a pretty formulaic but sort of charming ABC series on fraternity/sorority life at an Ohio university. And I will never, ever admit to enjoying this kind of show.... but ok, I do; it's a weird guilty pleasure. But it's also my childhood and my college days, in a way, or what they might have been if I'd known what I had when I had it. I remember back to that time, and it was so... carefree, although I would never have thought it at the time. That self-absorption of youth, and all the things that hadn't happened yet, and the future holding limitless possibility. And one day, you wake up, and the horizons aren't like that any more, and people around you are aging and dying, and everything is about health and problems and worries. We ought to live backwards, like Benjamin Button (not that I either read the story or saw the movie), living in reverse, having things become better rather than cruelly worse. Yeah, I know, it's all a little melodramatic... but it's hard to keep putting a positive spin on things. Yes, they are better than they were a year ago. But it's a long, long way to something that feels like a normal life.
And I so long for that.
Monday, July 5, 2010
One of those days
I didn't feel like this yesterday. I probably won't feel like this tomorrow. But today, everything is a little bit much.
Michael slept badly and has been feeling bad all day. I'm sure it's another low-grade porphyria attack... because his weight was actually lower yesterday and the day before. And this is starting to be the pattern, with a nauseating, horrible regularity. As soon as he cuts food enough that he starts to lose any weight, this happens. And what then? No alternative except to carb load, and it's always quick carbs, and the worst things for him, and I have no idea what this is doing to his blood sugar. It makes me cringe. It makes me sad and angry all at once. And the ugly part is that it makes me resentful as hell on a petty, stupid level, too.
Because I'd like to have a legit reason to go have a Whopper and fries and a chocolate shake. (Actually, none of those things appeal to me at all, but it's the idea...) The unpleasant fact, for me, is that in order to lose weight, I have to be eating less. A lot less. On a low-carb diet, I maintain. If I add any real carbs at all, I then start gaining, and that's exactly what's happened over the last year or so. To actually lose weight, I have to watch every calorie. And get the exercise that I'm not getting. The ugly truth is that you can lose weight on low carb pretty easily if you're young, and you haven't done it before, and your metabolism isn't already screwed up. For the rest of us... it's different. It's not so easy.
And I have no choice. I have to be well enough to take care of both of us. There isn't another choice, and that means getting this weight off, so that my hip doesn't hurt all the time, so that I'm not so tired all the time, so that everything is not sure a huge deal all the time. I have to do this.
But I'm hungry. And I hate it, and it's hard for me to be hungry and not be resentful. At least some of the time.
Michael slept badly and has been feeling bad all day. I'm sure it's another low-grade porphyria attack... because his weight was actually lower yesterday and the day before. And this is starting to be the pattern, with a nauseating, horrible regularity. As soon as he cuts food enough that he starts to lose any weight, this happens. And what then? No alternative except to carb load, and it's always quick carbs, and the worst things for him, and I have no idea what this is doing to his blood sugar. It makes me cringe. It makes me sad and angry all at once. And the ugly part is that it makes me resentful as hell on a petty, stupid level, too.
Because I'd like to have a legit reason to go have a Whopper and fries and a chocolate shake. (Actually, none of those things appeal to me at all, but it's the idea...) The unpleasant fact, for me, is that in order to lose weight, I have to be eating less. A lot less. On a low-carb diet, I maintain. If I add any real carbs at all, I then start gaining, and that's exactly what's happened over the last year or so. To actually lose weight, I have to watch every calorie. And get the exercise that I'm not getting. The ugly truth is that you can lose weight on low carb pretty easily if you're young, and you haven't done it before, and your metabolism isn't already screwed up. For the rest of us... it's different. It's not so easy.
And I have no choice. I have to be well enough to take care of both of us. There isn't another choice, and that means getting this weight off, so that my hip doesn't hurt all the time, so that I'm not so tired all the time, so that everything is not sure a huge deal all the time. I have to do this.
But I'm hungry. And I hate it, and it's hard for me to be hungry and not be resentful. At least some of the time.
Sunday, July 4, 2010
The 4th of July
It was broiling hot here by yesterday afternoon, and we were both having a pretty bad mindset day... me because I just couldn't work up the motivation for anything, and Michael because he gets up in the morning and feels ok, but by evening, he just feels terrible, and everything is such an effort. So we went out to a movie... the two really good things that have happened, in terms of quality of life in the last few months are that Michael's started driving again (YES! I can sit and knit, plus I really think it makes his mood better, though he says no.), and he's been willing to go to the theater. So we went to see Toy Story in 3-D... FUN movie, nearly as good as the first one, I thought, plus there's a Totoro toy which won my heart. Ate some movie popcorn because we hadn't had time for dinner before this idea, and regretted it... but not a ton of popcorn, so ok.
Anyway... I got out of the theater, and went right back into that wretched headspace that plagues me these days, where everything is about sadness and loss and regret. It was a beautiful night, warm and clear, and you can almost touch what it felt like to be 16 and have all the promise and infinite possibility ahead of you, and these days for me, that's a combination of joy and deep, deep bitterness. It takes me back to missing my mother, to missing someone I loved and lost, to feeling like my whole life has taken these unexpected and awful directions. And it just feel bad. I am working very hard these days on trying to keep myself present, to stay in TODAY and not the infinite past.
I was doing just that leaving the grocery store, chanting to myself, "stay present, stay present...", and I stepped outside, and there were fireworks everywhere. So we sat in the grocery store parking lot, and watched the fireworks, and it was... if not magic, at least it was here and now.
So that's the task for today. Stay present.
Weight the same as yesterday, not surprising with popcorn and late dinner. Michael actually down a little, which is very good.
Anyway... I got out of the theater, and went right back into that wretched headspace that plagues me these days, where everything is about sadness and loss and regret. It was a beautiful night, warm and clear, and you can almost touch what it felt like to be 16 and have all the promise and infinite possibility ahead of you, and these days for me, that's a combination of joy and deep, deep bitterness. It takes me back to missing my mother, to missing someone I loved and lost, to feeling like my whole life has taken these unexpected and awful directions. And it just feel bad. I am working very hard these days on trying to keep myself present, to stay in TODAY and not the infinite past.
I was doing just that leaving the grocery store, chanting to myself, "stay present, stay present...", and I stepped outside, and there were fireworks everywhere. So we sat in the grocery store parking lot, and watched the fireworks, and it was... if not magic, at least it was here and now.
So that's the task for today. Stay present.
Weight the same as yesterday, not surprising with popcorn and late dinner. Michael actually down a little, which is very good.
Saturday, July 3, 2010
Summer Saturday
I miss you, too, lovely anon person. It means a lot that you're thinking of me.
I keep trying to write, but I don't know what to say these days. I don't know where to start, don't know how to focus. So much has happened over the last few years, over the last few months, over the last few weeks... and yet it's all the same as when I started, in a way. I don't know where to start. And really, I think what I need to do is just start over.
When I started this blog, Michael and I had just started on low carb. And in the two plus years since then... well, he lost a lot of weight, I gained a little weight, my mother died, Michael came close to dying, and in the process, he finally got accurately diagnosed with what was really wrong, hereditary coproporphyria. Making him genuinely rare, explaining a hell of a lot of his life story, and, ironically, making him one of the very, very few people in the entire world who really can't eat a low carb diet. Sometimes you just have to laugh. Or put your head through a wall, I guess.
And so since then... we've been trying to adjust. And it has not been easy. There's a lot more to it, and I'll write about it eventually, but the very short version is that he's gained a lot of weight and continues to gain weight, and is, I think, usually having low-grade porphyria symptoms of one kind or another. But not the scary stuff; that's the good part. So he's better, really better... but at the same time, we have to find a way of stopping the escalating weight. We're trying to get a referral to the Mayo Clinic; they have a porphyria clinic, and maybe they can help us. It's hard to know what to do. I've never felt quite so much at a loss about what to do.
Then there's me. The carb-fest that's resulted from Michael needing to eat a high carb diet has not been good for me. It is much more difficult for me to skip this stuff when it's around all the time. Yes, I've gained, and I feel like hell, and I'm not getting any exercise... and all these things aside, it's just been a really, really rough spring. I've been sick and exhausted, and I feel like all the stress of the last couple of years has all sort of exploded... everything I just sat on while I had to be the strong person who coped. And it's taken a long time to get anything like equilibrium back. I feel like I'm just starting to edge there.
So... I don't know where to go. I don't want to spend this blog whining about how crappy everything is... especially because it's not quite so much, these days. But somewhere this stuff needs to be said, and it can't be at home, most of the time, for so many reasons. I'm going to try to be back here.
And on the weight front... I'm trying for compromise. Trying to keep the mostly low-carb, which makes me feel better. But back to food diary, to writing everything down again. It's good for Michael. And it's ok for me, although when I gave up charting food years ago, it made me REALLY happy. It was much easier for me to not be so obsessive about food. But it's what we have to do to try to get back on some kind of track.
We'll see what happens.
I keep trying to write, but I don't know what to say these days. I don't know where to start, don't know how to focus. So much has happened over the last few years, over the last few months, over the last few weeks... and yet it's all the same as when I started, in a way. I don't know where to start. And really, I think what I need to do is just start over.
When I started this blog, Michael and I had just started on low carb. And in the two plus years since then... well, he lost a lot of weight, I gained a little weight, my mother died, Michael came close to dying, and in the process, he finally got accurately diagnosed with what was really wrong, hereditary coproporphyria. Making him genuinely rare, explaining a hell of a lot of his life story, and, ironically, making him one of the very, very few people in the entire world who really can't eat a low carb diet. Sometimes you just have to laugh. Or put your head through a wall, I guess.
And so since then... we've been trying to adjust. And it has not been easy. There's a lot more to it, and I'll write about it eventually, but the very short version is that he's gained a lot of weight and continues to gain weight, and is, I think, usually having low-grade porphyria symptoms of one kind or another. But not the scary stuff; that's the good part. So he's better, really better... but at the same time, we have to find a way of stopping the escalating weight. We're trying to get a referral to the Mayo Clinic; they have a porphyria clinic, and maybe they can help us. It's hard to know what to do. I've never felt quite so much at a loss about what to do.
Then there's me. The carb-fest that's resulted from Michael needing to eat a high carb diet has not been good for me. It is much more difficult for me to skip this stuff when it's around all the time. Yes, I've gained, and I feel like hell, and I'm not getting any exercise... and all these things aside, it's just been a really, really rough spring. I've been sick and exhausted, and I feel like all the stress of the last couple of years has all sort of exploded... everything I just sat on while I had to be the strong person who coped. And it's taken a long time to get anything like equilibrium back. I feel like I'm just starting to edge there.
So... I don't know where to go. I don't want to spend this blog whining about how crappy everything is... especially because it's not quite so much, these days. But somewhere this stuff needs to be said, and it can't be at home, most of the time, for so many reasons. I'm going to try to be back here.
And on the weight front... I'm trying for compromise. Trying to keep the mostly low-carb, which makes me feel better. But back to food diary, to writing everything down again. It's good for Michael. And it's ok for me, although when I gave up charting food years ago, it made me REALLY happy. It was much easier for me to not be so obsessive about food. But it's what we have to do to try to get back on some kind of track.
We'll see what happens.
Friday, April 30, 2010
Today
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.
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.
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.
Friday, February 12, 2010
I hab a code
Woke up this morning to nasal congestion, sore throat, and a kid who missed the bus. AND I have people coming over for dinner tonight. Bleah. Maybe we can just eat them. That would be low carb, right?
So this is Friday of my first week back on hard core low carb, and I'm doing... ok, I guess. I don't know why everyone else in the world gets this whoosh thing and loses something... I am down 1.3 lbs. That's it. But I feel better, and I'm moving more easily. I just need to get through the double challenge of people for dinner and being sick without hitting the bread or something.
I haven't had a chance to really tell the whole long story, but at the moment, the other part of the challenge is eating low carb while living with someone who must eat a high carb diet. So far, this is going ok, because I'm pretty motivated (aka DESPERATE), but I succumbed to tasting the pasta yesterday, and that's not a place we want to go....
So this is Friday of my first week back on hard core low carb, and I'm doing... ok, I guess. I don't know why everyone else in the world gets this whoosh thing and loses something... I am down 1.3 lbs. That's it. But I feel better, and I'm moving more easily. I just need to get through the double challenge of people for dinner and being sick without hitting the bread or something.
I haven't had a chance to really tell the whole long story, but at the moment, the other part of the challenge is eating low carb while living with someone who must eat a high carb diet. So far, this is going ok, because I'm pretty motivated (aka DESPERATE), but I succumbed to tasting the pasta yesterday, and that's not a place we want to go....
Wednesday, February 10, 2010
Bleah
Yesterday, ate less than 1500 calories. Weight: up that 2/10 of a pound that I was down yesterday.
I know I'm retaining water like mad for some reason; I'm just beyond bloated, and so tomorrow when I can be home all day, I'll probably take a diuretic and see if that helps any (not today! No fun teaching classes and running to the loo all the time, no way!). But I just have to wonder what in hell is going on with my metabolism.
For the last however-many years, it's been really hard for me to lose weight, no matter what I did. In a way, I didn't care so much, because I was more worried about other things, and I was at a weight that was not exactly uncomfortable for me. But now... I'm way above that weight, and Michael's relative health is giving me a chance to focus a little on me. And whatever's going on with my hip is making it mandatory. So this issue is becoming critical.
I know I'm retaining water like mad for some reason; I'm just beyond bloated, and so tomorrow when I can be home all day, I'll probably take a diuretic and see if that helps any (not today! No fun teaching classes and running to the loo all the time, no way!). But I just have to wonder what in hell is going on with my metabolism.
For the last however-many years, it's been really hard for me to lose weight, no matter what I did. In a way, I didn't care so much, because I was more worried about other things, and I was at a weight that was not exactly uncomfortable for me. But now... I'm way above that weight, and Michael's relative health is giving me a chance to focus a little on me. And whatever's going on with my hip is making it mandatory. So this issue is becoming critical.
Tuesday, February 9, 2010
Trying to Get Back in the Swing...
I'm going to write the long update one of these mornings... one of these mornings when I'm not teaching, and I'm not half asleep... in the meantime, I'm just trying to get back in the habit of writing something.
So, the weight front... NOT GOOD. The consequence of having spent most of the fall and early winter with Michael in the hospital was a chain of bad, and to some extent, comfort eating. I find myself at a horrifying 311, about 30 lbs. higher than when last I blogged regularly. I have a pretty good idea how I got here, but I'm not quite sure how I'm going to get back, because my body is being incredibly stubborn about wanting to release weight.
But we try. My short-term plan: get back in the habit of writing down everything I eat. No, I'm not going to bore you with this, and I'm not going to get obsessive about it. But yesterday, I ate less than 1500 calories and very few carbs, just salad and green bean carbs.... weight today, down 2/10 of a pound. This is a tad discouraging, but we'll just have to see what happens. Start again, hang in there, try not to get discouraged. Get back to this as a way of life.
So, the weight front... NOT GOOD. The consequence of having spent most of the fall and early winter with Michael in the hospital was a chain of bad, and to some extent, comfort eating. I find myself at a horrifying 311, about 30 lbs. higher than when last I blogged regularly. I have a pretty good idea how I got here, but I'm not quite sure how I'm going to get back, because my body is being incredibly stubborn about wanting to release weight.
But we try. My short-term plan: get back in the habit of writing down everything I eat. No, I'm not going to bore you with this, and I'm not going to get obsessive about it. But yesterday, I ate less than 1500 calories and very few carbs, just salad and green bean carbs.... weight today, down 2/10 of a pound. This is a tad discouraging, but we'll just have to see what happens. Start again, hang in there, try not to get discouraged. Get back to this as a way of life.
Monday, February 8, 2010
It's Been A Long, Long Time...
I'm back. Hopefully to stay.
There's been so much to say and update and everything else that it's kept me from writing anything lately... just too much; I don't know where to start. So I'm just starting, and I'll tell the stories later.
Michael is ok, and I'm starting to believe that he's going to be fine. And I'll tell that long story later, because I just want to get going.
And I'm ok, all things considered, but I've gained a fair amount of weight over the last six months, and I absolutely have to get it off, because my hip is incredibly painful, and overall I feel terrible.
So I start again. This moment, now, because all I've been doing is saying, "tomorrow I will do this, and tomorrow it will be like this." And so forth. And then tomorrow is always the same. So it's not tomorrow; it's now. Yesterday, today... every moment is about making choices that lead somewhere different. The one thing that it isn't about is tomorrow, because the future, in some sense, never happens. It's all about the choice of the moment.
There's been so much to say and update and everything else that it's kept me from writing anything lately... just too much; I don't know where to start. So I'm just starting, and I'll tell the stories later.
Michael is ok, and I'm starting to believe that he's going to be fine. And I'll tell that long story later, because I just want to get going.
And I'm ok, all things considered, but I've gained a fair amount of weight over the last six months, and I absolutely have to get it off, because my hip is incredibly painful, and overall I feel terrible.
So I start again. This moment, now, because all I've been doing is saying, "tomorrow I will do this, and tomorrow it will be like this." And so forth. And then tomorrow is always the same. So it's not tomorrow; it's now. Yesterday, today... every moment is about making choices that lead somewhere different. The one thing that it isn't about is tomorrow, because the future, in some sense, never happens. It's all about the choice of the moment.
Saturday, December 12, 2009
Very Quick....
I swear I will tell this story better later, but I've had about 3 hours of sleep in the last 36.
Michael finally got home from hospital/rehab about 4 weeks ago, and was great. Weak, not exactly running miles, but great. And then about 10 days ago, he started getting weaker again, and terribly confused, and long story short, he's back in the hospital as of last night/this morning. He is ok, but they really don't know what's wrong with him. Not cardiac probably. Maybe related to the lymphoma. Maybe related to everything else. I finally got him into a room at 7:30 this morning and came home to sleep.
I am anxious and so sick of this never really knowing what the hell is going on. I'm hoping that maybe this time we;ll get some answers. And he was scheduled for his PET scan this Friday, and then they were going to start chemo, so I'm also scared that they may not be able to do that.
I will tell the story later, hopefully. I will really, really try to update more regularly (and thank you, lovely anonymous person, for asking. It means a lot to me that you care.).
Michael finally got home from hospital/rehab about 4 weeks ago, and was great. Weak, not exactly running miles, but great. And then about 10 days ago, he started getting weaker again, and terribly confused, and long story short, he's back in the hospital as of last night/this morning. He is ok, but they really don't know what's wrong with him. Not cardiac probably. Maybe related to the lymphoma. Maybe related to everything else. I finally got him into a room at 7:30 this morning and came home to sleep.
I am anxious and so sick of this never really knowing what the hell is going on. I'm hoping that maybe this time we;ll get some answers. And he was scheduled for his PET scan this Friday, and then they were going to start chemo, so I'm also scared that they may not be able to do that.
I will tell the story later, hopefully. I will really, really try to update more regularly (and thank you, lovely anonymous person, for asking. It means a lot to me that you care.).
Friday, October 30, 2009
Long-Overdue Update
I'm so, so sorry that I haven't updated in ages. I've just been so beyond exhausted that I haven't been able to put it together to tell the story.
Seven weeks ago today, Michael got up and was so weak that he couldn't stand. He basically slipped off a chair and onto the floor, and couldn't get up, wasn't making any sense, etc. I called the ambulance and took him to the hospital. When he was first admitted, they seemed to think that it was just a medication adjustment, not probably a big deal though not good.
Two days later, they told me that his heart was working so poorly that his other organs were shutting down, and that there was a 50% chance that he would die, and that if he didn't die, it was probably still only a matter of time, even if they pulled him through this one. And they took him to ICU, and I was terrified.
And then, two days later, everything started improving. His kidneys started working again, they did another echocardiogram and his heart was working as well as it had been a year ago, and everyone perked up and stopped talking about him dying. But he was terribly weak and completely delirious for weeks. After two weeks, he started really getting better... they moved him out of ICU and to the cardiac ward... and he was there for another two weeks.
A lot of other stuff happened in the middle, but there are two important things... the most important is that when they were trying to figure out what was wrong in the ICU, they did a lot of body scanning, and they found some unexplained masses in his lower abdomen. After a biopsy and much waiting and testing, it turns out that he has lymphoma. T-cell-rich large B-cell lymphoma, to be precise. This is treatable but scary. And he will be starting chemotherapy relatively soon, and I am... well, happy that they found this, because if the other things hadn't happened, I don't think that they ever would have caught it, not until it really was too late, because no one was looking. But scared. I have been through too much chemo and cancer and death with people I loved over the last seven years.
The other thing is that he has been in bed for the last seven weeks, and so he is terribly deconditioned. They finally released him to rehab two days ago, so he can relearn to walk. So he can get strong enough to do the chemo.
It's been a long, long haul. I hope we're on the downhill part, now, but it's still going to be a long road.
Seven weeks ago today, Michael got up and was so weak that he couldn't stand. He basically slipped off a chair and onto the floor, and couldn't get up, wasn't making any sense, etc. I called the ambulance and took him to the hospital. When he was first admitted, they seemed to think that it was just a medication adjustment, not probably a big deal though not good.
Two days later, they told me that his heart was working so poorly that his other organs were shutting down, and that there was a 50% chance that he would die, and that if he didn't die, it was probably still only a matter of time, even if they pulled him through this one. And they took him to ICU, and I was terrified.
And then, two days later, everything started improving. His kidneys started working again, they did another echocardiogram and his heart was working as well as it had been a year ago, and everyone perked up and stopped talking about him dying. But he was terribly weak and completely delirious for weeks. After two weeks, he started really getting better... they moved him out of ICU and to the cardiac ward... and he was there for another two weeks.
A lot of other stuff happened in the middle, but there are two important things... the most important is that when they were trying to figure out what was wrong in the ICU, they did a lot of body scanning, and they found some unexplained masses in his lower abdomen. After a biopsy and much waiting and testing, it turns out that he has lymphoma. T-cell-rich large B-cell lymphoma, to be precise. This is treatable but scary. And he will be starting chemotherapy relatively soon, and I am... well, happy that they found this, because if the other things hadn't happened, I don't think that they ever would have caught it, not until it really was too late, because no one was looking. But scared. I have been through too much chemo and cancer and death with people I loved over the last seven years.
The other thing is that he has been in bed for the last seven weeks, and so he is terribly deconditioned. They finally released him to rehab two days ago, so he can relearn to walk. So he can get strong enough to do the chemo.
It's been a long, long haul. I hope we're on the downhill part, now, but it's still going to be a long road.
Sunday, September 13, 2009
Whatever Is Prayer for You...
Michael is back in the hospital, and they are moving him to ICU this morning. His heart is not doing well, and as a result, nothing else is doing well. I can't tell exactly how serious this is, but it is not good.
We would appreciate all the positive thought and prayer that you can send.
We would appreciate all the positive thought and prayer that you can send.
Saturday, August 1, 2009
And So On....
Every day lately has just been a matter of wondering what bad things might come along next.
Michael's heart rate is good (and his weight is great; he's 371.6 this morning), but he feels terrible, he's exhausted all the time, he's dizzy, and worst of all for me, he's really confused most of the time. He's been doing things like talking to the remote control instead of the phone and trying to eat his tea (the drink, not the meal) with a fork. I find this a little scary. Everyone seems to think that it's all about low heart function (and his blood pressure is low, too) but this is not exactly comforting to me.
Last night... or this morning, more accurately... he got up, and then I don't know what happened. He fell, fortunately not hurting himself, but we couldn't get him up and had to call the paramedics.
The cardiologist swears that he will feel better next week. We'll see, I guess.
Michael's heart rate is good (and his weight is great; he's 371.6 this morning), but he feels terrible, he's exhausted all the time, he's dizzy, and worst of all for me, he's really confused most of the time. He's been doing things like talking to the remote control instead of the phone and trying to eat his tea (the drink, not the meal) with a fork. I find this a little scary. Everyone seems to think that it's all about low heart function (and his blood pressure is low, too) but this is not exactly comforting to me.
Last night... or this morning, more accurately... he got up, and then I don't know what happened. He fell, fortunately not hurting himself, but we couldn't get him up and had to call the paramedics.
The cardiologist swears that he will feel better next week. We'll see, I guess.
Tuesday, July 28, 2009
Awfulness, Part II
My cat died this morning. And it was an accident, and I probably could have prevented it, one way or another, and I am heartbroken.This morning, early, I heard barking in my backyard, and cat noises, too, but I was so exhausted that I didn't go check it out. I didn't even think that much about it, because (1) there's a dog that barks a lot a couple of yards over, and (2) there's a cat that likes to come by and scrap with my cats fairly often.
A couple of hours later, I woke up and found an actual dog barking and growling in my yard. I was a little scared to get close, so I called the police guy. When he came, he chased the dog farther back in the yard and found the dog... and another dog in my pool... and my beloved Crispin, dead, in the pool.
The gate to the yard was open last night... I didn't think twice about it because there are (before now) no stray dogs in the neighborhood, no small children, it's hard to get to the pool, and my own dog was away with my son, so I wasn't worried about him getting out. The cats never stray beyond the driveway, so I never worried about letting them out. But what must have happened is that the two stray dogs chased the cat and ran into the pool... the dog and poor Crispin couldn't get out.
I could have stopped this. I could have shut the gate. I could have checked out the noises when I first heard them. I could have left the big pool steps in... we took them out because they were causing problems with the liner and Michael was unable to get into the pool anyway. I could have prevented this. Yeah, I had no way of knowing. But I could have prevented it.

I loved that cat like no other. I used to think, I love you so much, something will happen to you.
Something did.
Goodbye, Crispin. I loved you the best and the most from the moment you came to me as a starving kitten. No other cat will ever be like you.

Monday, July 27, 2009
Awfulness, Part I
So... when last I posted, we were in the midst of trying to figure out why Michael was getting these spells of feeling terrible, plus trying to get him well enough for the hernia/stomach surgery that was scheduled for the end of July.
Leaving out a good part of the middle bit... two weeks ago, he went in for his annual echocardiogram, and they discovered that his heart was pumping at 15% of capacity (normal, FYI, is about 60%). They immediately put him in the hospital and diagnosed congestive heart failure. And we've spent the last two weeks in the hospital... I say, "we" because I stayed with him the whole time.
The good news... I guess, if there is really any great news here... is that they put him on a whole lot of drugs, which he seems to be relatively ok with, and that the prognosis seems... well, ok I guess. He is relatively young. He's lost a lot of weight (and they said, for whatever it's worth, that if he had not, he would probably be dead by now). CHF is rarely completely reversable, but it can get a lot, lot better. And this explains a lot of the weird symptoms that he's had for so long, although no one has at all explained why it has been so cyclical. There's a lot of hope that maybe he'll really start feeling better.
The not-so-good-news... well, the condition in general. And of course, the surgery has to be postponed for some time until cardio clears him. And he's on a ton of medications which slow his heart rate (good) but lower his blood pressure (bad, because it wasn't high to begin with, and very low blood pressure makes you dizzy and confused). I don't know... it's hard to get any perspective about this right now.
I am worried and scared and overloaded and exhausted... so is he. But his weight is the lowest ever (378), and we are home, and we can rebuild.
Leaving out a good part of the middle bit... two weeks ago, he went in for his annual echocardiogram, and they discovered that his heart was pumping at 15% of capacity (normal, FYI, is about 60%). They immediately put him in the hospital and diagnosed congestive heart failure. And we've spent the last two weeks in the hospital... I say, "we" because I stayed with him the whole time.
The good news... I guess, if there is really any great news here... is that they put him on a whole lot of drugs, which he seems to be relatively ok with, and that the prognosis seems... well, ok I guess. He is relatively young. He's lost a lot of weight (and they said, for whatever it's worth, that if he had not, he would probably be dead by now). CHF is rarely completely reversable, but it can get a lot, lot better. And this explains a lot of the weird symptoms that he's had for so long, although no one has at all explained why it has been so cyclical. There's a lot of hope that maybe he'll really start feeling better.
The not-so-good-news... well, the condition in general. And of course, the surgery has to be postponed for some time until cardio clears him. And he's on a ton of medications which slow his heart rate (good) but lower his blood pressure (bad, because it wasn't high to begin with, and very low blood pressure makes you dizzy and confused). I don't know... it's hard to get any perspective about this right now.
I am worried and scared and overloaded and exhausted... so is he. But his weight is the lowest ever (378), and we are home, and we can rebuild.
Saturday, July 4, 2009
Saturday
It's another about-the-same day here, but I'm trying to make it different. I'm trying not to get upset. Im trying not to cry. I am trying to take care of myself.
Part of the problem with this cycle of awful stuff that happens is that Michael is so miserable; he says nothing at all (and those things that he says are mostly disturbing, like "where are all the painkillers") and most of the time, he sleeps. I feel desperately isolated and alone; I lose my best friend and confidante as well as everything else. When he's well, he's everything I need... and so, when things are like this, there's nowhere to turn.
We see the doctor on Tuesday.
And in the meantime, I will do what I can. And I will try to focus a little harder on taking some kind of care of me, too.
Part of the problem with this cycle of awful stuff that happens is that Michael is so miserable; he says nothing at all (and those things that he says are mostly disturbing, like "where are all the painkillers") and most of the time, he sleeps. I feel desperately isolated and alone; I lose my best friend and confidante as well as everything else. When he's well, he's everything I need... and so, when things are like this, there's nowhere to turn.
We see the doctor on Tuesday.
And in the meantime, I will do what I can. And I will try to focus a little harder on taking some kind of care of me, too.
Friday, July 3, 2009
I'm Back. Sort of.
I'm sorry for just vanishing... and not checking email and not updating and not responding to anything and all the other things that I should be sorry about.
It's been rough. And I get tired of posting things that say, my life right now is rough, and I am trying not to be discouraged. But it's all been stacking up, and I don't know how to make it better, and I don't know what to do to get my head above water, and I feel so desperately alone.
But you know, that makes for pretty tedious reading.
Michael is going through another spell of this mysterious crap that no one can figure out, and this time, it's hit him so hard that he can barely stand up. He sleeps all the time. Two weeks ago, we we thinking that he would be finally able to have surgery for his hernia (which is constant pain these days) and to have the skin on his stomach removed, and that's all actually scheduled for the end of July, but unless things get a lot better, I can't see it happening.
He's been having iron IVs to help with the anemia... one reason I haven't been on the computer at all; it's been so much time seeing various doctors and in transfusion centers and so on... two series so far, and whether it's doing any good or not, it certainly isn't stopping this mysterious weakness and associated symptoms.
We see the doctor on Tuesday. And I will say, it has been more than a year, and this is not better. Send us to someone who can diagnose this. Or figure out how we can go somewhere like the Mayo Clinic. This has to stop. We are exhausted and discouraged, and we cannot live like this.
It's almost a year since my mother died. She would have known how to approach this. As it is... Michael can't make decisions; he mostly can't even stay awake. And so it's me. Just me. And I will have to figure this out somehow, alone.
It's been rough. And I get tired of posting things that say, my life right now is rough, and I am trying not to be discouraged. But it's all been stacking up, and I don't know how to make it better, and I don't know what to do to get my head above water, and I feel so desperately alone.
But you know, that makes for pretty tedious reading.
Michael is going through another spell of this mysterious crap that no one can figure out, and this time, it's hit him so hard that he can barely stand up. He sleeps all the time. Two weeks ago, we we thinking that he would be finally able to have surgery for his hernia (which is constant pain these days) and to have the skin on his stomach removed, and that's all actually scheduled for the end of July, but unless things get a lot better, I can't see it happening.
He's been having iron IVs to help with the anemia... one reason I haven't been on the computer at all; it's been so much time seeing various doctors and in transfusion centers and so on... two series so far, and whether it's doing any good or not, it certainly isn't stopping this mysterious weakness and associated symptoms.
We see the doctor on Tuesday. And I will say, it has been more than a year, and this is not better. Send us to someone who can diagnose this. Or figure out how we can go somewhere like the Mayo Clinic. This has to stop. We are exhausted and discouraged, and we cannot live like this.
It's almost a year since my mother died. She would have known how to approach this. As it is... Michael can't make decisions; he mostly can't even stay awake. And so it's me. Just me. And I will have to figure this out somehow, alone.
Monday, May 11, 2009
Catching up
Yes, it's been a while....
It's been a crazy few weeks, mostly because it's the end of the semester, and everything happens at once, but also because we've been running around like mad to doctors appointments and so forth. But all the news, for a change, is pretty much good (although there's nothing really weight-related to report).
Michael finally started taking an antidepressant (Cymbalta, along with me), and miraculously, he's actually feeling a lot better. Not physically, but the scary level of depression that has been characteristic of (and increasing) for the last six months seems to be largely gone. It really does seem miraculous to me.
This week he starts iron transfusions to try to deal with the anemia (which has abruptly worsened again) and, at the end of the week, sees the bariatric/hernia guy to see if anything can be done about the increasing pain from his umbilical hernia. I am hoping that the answer is yes... and that they might want to deal with the excess skin in his stomach at the same time. That would be just such a good thing, even if he had to spend some considerable time in the hospital. But there are so many unknown things about that... we should have a better idea later in the week, I hope.
And I am trying to get refocused on actually losing weight instead of simply holding my own. I think I can do this. It makes such a difference when Michael's state of mind is better... it gives me the ability to think about something else, mainly.
There have been so many other things, too. A sad Mother's Day... the first without my mother. I swear that she made an out-of-season flower bloom for me, though.
And in news of the weird, my ex announced that he and his live-in girlfriend (it is hard to call this woman a 'girlfriend' because she looks 20 years older than him, but what other term is there?) are getting married. Not my business or my problem, but sad in a way. I'd like to see so much more for him; he's a genuinely great guy, although we couldn't make it work. But my son said, I think he's marrying the first girl he was with because he can't figure out how to do anything else, emotionally or financially. This from a 14 year old, and absolutely correct. It's just hard to see people you care about screwing up their lives by making the same mistakes over and over again, but what can you do? And he's screwing up the relationship with our son at the same time, and he doesn't see it, and the last person he could hear that from is me.
But you never know, I suppose.
It's been a crazy few weeks, mostly because it's the end of the semester, and everything happens at once, but also because we've been running around like mad to doctors appointments and so forth. But all the news, for a change, is pretty much good (although there's nothing really weight-related to report).
Michael finally started taking an antidepressant (Cymbalta, along with me), and miraculously, he's actually feeling a lot better. Not physically, but the scary level of depression that has been characteristic of (and increasing) for the last six months seems to be largely gone. It really does seem miraculous to me.
This week he starts iron transfusions to try to deal with the anemia (which has abruptly worsened again) and, at the end of the week, sees the bariatric/hernia guy to see if anything can be done about the increasing pain from his umbilical hernia. I am hoping that the answer is yes... and that they might want to deal with the excess skin in his stomach at the same time. That would be just such a good thing, even if he had to spend some considerable time in the hospital. But there are so many unknown things about that... we should have a better idea later in the week, I hope.
And I am trying to get refocused on actually losing weight instead of simply holding my own. I think I can do this. It makes such a difference when Michael's state of mind is better... it gives me the ability to think about something else, mainly.
There have been so many other things, too. A sad Mother's Day... the first without my mother. I swear that she made an out-of-season flower bloom for me, though.
And in news of the weird, my ex announced that he and his live-in girlfriend (it is hard to call this woman a 'girlfriend' because she looks 20 years older than him, but what other term is there?) are getting married. Not my business or my problem, but sad in a way. I'd like to see so much more for him; he's a genuinely great guy, although we couldn't make it work. But my son said, I think he's marrying the first girl he was with because he can't figure out how to do anything else, emotionally or financially. This from a 14 year old, and absolutely correct. It's just hard to see people you care about screwing up their lives by making the same mistakes over and over again, but what can you do? And he's screwing up the relationship with our son at the same time, and he doesn't see it, and the last person he could hear that from is me.
But you never know, I suppose.
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