Okay. Mid-June, I weighed around 93, 94 lbs. or so. Last night, I weight 123. That's 30 lbs., about a third of my body weight, in a tad over two months. Not possible, medically, to be fat or muscle. At least not from that starting weight. It would be possible to gain near 30 lbs. if I weighed close to or over 300, thereabouts, but not 94. Some of this must be water, then, but who knows how much? I can't begin to guess, so I have no clue what I weigh.
The swelling is so bad that my skin has split in two other places on my right lower leg, and once on my left leg, for the first time. I'm eating more and more protein, as they told me to do, and still I can't get a hold on this anasarca. It's driving me crazy. It would go a long way toward making me feel better, and have less pain, if only the edema would go away. It's now in my butt, too, and my abdomen is enormous. Never saw such a thing. Oh, well.
Our washer died and can't be repaired--paid $129 to a repairman just to have him do nothing. So we have to go out tomorrow and buy a new one. But none of my clothes fit. There's one skirt that just might, so I'll have to go ahead and squeeze myself into that and pray I can still breathe.
My gut isn't any better. Piss caca.
There's a place called the National Weight Registry, or close to that, open to anyone who's lost 30 pounds or more and not regained it for at least one year. They're doing a study and need tons (no pun) of people to volunteer for the group. I checked it out, and it's a mix of every size, shape, color, gender, and so forth, who are succeeding at maintaining weight loss. I was thinking about joining; however, I was pressured by my ED into doing it. While it took tremendous determination and control over hunger, that's not the same as losing it--for lack of a better word--normally, as you did/are doing.
Here's a link: National Weight Control Registry
So many of you have lost way more than that, and I expect that most or all of you will maintain the loss for a year or more. Sunshine, you're already in maintenance mode and have been for some time. Has it been a year? Anyway, I think it's worth looking into, because it would be a great thing participants could do for others in this battle of EDs.
BIG bragging here. . . My brother-in-law, who's been posted once to Iraq and twice to Afghanistan, was awarded the Bronze Star for meritorious service in combat. We had an ugly time of it from the very first, when he married my sister. I hated that, since I didn't want to put my sister in the position of being in the middle. He didn't want her to associate with me because I was a feminist and would make her "hate men," and turn her away from being a good wife. Can you believe that? So the only time I could visit her over the decades was when he was in the field. It was awful to have to sneak around like that. My sister and I are so close that we're almost one, like a married couple, and he wanted to divide us.
Anyway, I had tried to make him join me in a truce, telling him that since we both loved her, we should do it for her. Plus, I told him, I thought he was a decent guy. Which was basically a lie, since he's a sexist and racist, but what can I do about it? FINALLY, he agreed to start over. He writes to me every day from Afghanistan, and I told him how very proud I was of him, winning the star. Which I am.
Back to the washer for a little complaining. I'm pissed that Chick has been laid off; I have no income for at least 12 weeks, and the washer has to break down now of all times. I belong to Consumer Reports online, so I looked up some models. Two Kenmores I liked were reasonably priced and had all the features (I need very few) that I need, EXCEPT for a bleach dispenser. Have you ever heard of such a thing? NO bleach dispenser? Each of those washers was 600+ bucks, and they can't give you one? Boy, was I pissed. I then looked at other brands, concentrating on Whirlpool, and it was the same damn thing!!! WTF?
Chick wanted to go to get one tomorrow, alone. After reading up on them, I told him I want to tag along. I can tell he wants me to let him take care of it, but no way. I'm going to ignore CR, since they only tested a few models, and study the various brands at Sears online. Then I'll be better informed when we go.
I'm still reading fiction like a fiend. It's been entertaining me, as well as taking me away from the daily blues. I'll snap out of it soon--don't worry. I'm just afraid of the weight gain, as all anorexics would be, and desperately don't want to lose my hair. Maybe I won't. I'll just look on the optimistic side when it comes to this. It's the only thing I can do.
My chubby kitty, the female, is disgusted with her diet food, so she sits by her dish of kibble and stares at me. lol I don't give in, because she has cardiomyopathy and I also don't want her to be a diabetic. Chick, on the other hand, will give her treats. I gave him hell about, so I think he's not doing it anymore. I told him that if she ultimately needs insulin or something, he'll have to give her the shots or pills, not me. I think that made an impression.
I read something that I think all of you know already, but just in case you haven't, I'll talk about it. There was a good amount of evidence that it would be easier for someone who'd had a gastric bypass/roux n y, etc., to maintain their weight than it would be for someone who'd had the band--or even more--the sleeve. That's because the bypass generally removes the area where ghrelin and leptin are formed, leaving the formerly obese person with less hunger. The stats for regaining weight aren't at the tip of my tongue, but sleeve people gained the most back, followed by band people, then the bypass people.
Also, they wrote about how many sleeve and band patients taught themselves how to "fool the system" and eat things other than what was recommended or allowed. They often ate protein last, too, and filled up on refined foods and desserts/candy, etc.
This really surprised me. It was like the study indicated that bypass patients took the surgery more seriously than those with the other procedures. I'll have to read more on the subject and will let you know what I find.
Oh, my. I sure can talk!
Friday, September 2, 2011
Wednesday, August 24, 2011
It's been a while.
Tuesday was my important appointment with the Grand Poo-Bahs of the GI service. I'll make it short. They were absolutely wonderful. I've rarely met doctors that respectful of a patient, that invested in explaining everything, that sympathetic to what a patient was going through, in my life. The head guy is nearly 80!!! His Fellow spent most of the time with me (what a sweetheart), then he came in as clean-up man, just like in baseball. The Fellow told me that the Big Guy was very, very conservative in his treatments, so you can imagine the Fellow's and my surprise with Big Guy prescribed a very aggressive course of treatment. He kicked me up to predisone; a long-acting anti-inflammatory specifically for the bowel; a rectal suppository that treats inflammation, and an anti-cancer drug used in leukemia treatment. My immune system will be taken down so that it will stop attacking my intestines. Yes, I'll be vulnerable to infections, and I'll probably be on the chemo for months. They predicted that I could gain as much as 50 lbs., and that it's possible my hair could fall out.
Only the weight bothers me, and it bothers me to the point of terror when I think about it. Therefore, I've blocked it from my mind.
They ran some blood tests. One is to make sure that genetically, I can take the chemo without problems. Another was to get a baseline blood value to watch how it is affecting my body. They checked my anemia again. It was remaining stable at 10, which isn't normal, but is damn good compared to before. No transfusion necessary. They also were re-checking my liver values, which were abnormal.
My protein and albumen were exceedingly low. I was startled, and asked how that could be if I were taking in over twice what is required for a woman my age and weight? The Big Guy said that the disease was causing malabsorption, and I wasn't getting much of the nutrition, including protein, that I was eating. He expected that once the inflammation was under control, I'd be able to use the protein again. Then my horrendous edema would go away. By looking at me, he estimated my weight as 100 or so. I told him I thought that was right, and that I'd been very good about trying to gain weight. But my weight on the scale was 121. Eleven pounds of water. That's gonna be some piss-fest once it starts to go.
He also said I should go back to eating normal food, and don't have to be on the low-fiber/residue diet. He said if it were going to work, it already would have. He said he didn't put patients on it except post-op. I was grateful for that, as you might imagine. I'm thinking of all the things I can cook/eat now. I'm pretty sure I'll make sloppy joes tomorrow. Chili the next day. I'll lay off hot peppers, cayenne, etc., since I know they irritate me even under the best of circumstances. He said if there's a food which bothers you once you go back to normal eating, just avoid that.
I have the fixin's for a nice pot roast, or maybe beef stew, here. I would have made them anyway, only with peeled potatoes and no peas, etc. Now I can have them the usual way.
Let's pray this works. If it does, I'll be overjoyed. Maybe I can even go to bed and sleep for several hours. I long to do that. Just so, so, exhausted and weak.
Chick hasn't been on his bicycle for a few days. I've loved having him home. I feel safe, secure, warm, etc. What's weird is that usually he's watching movies or painting, and I'm reading either a book or on line. So we're not constantly interacting or anything. It's just comforting and wonderful to have him here.
It was very odd to hear about the earthquake back east. My god! That's what happens here, not there. Then there was one in Colorado, I believe, around the same magnitude, today. WTH?? Scorching heat, which killed people from a variety of states; fires, tornadoes. No wonder some people believe the world will end in 2012. Spooky.
If I go bald, or nearly so, I'm going to learn how to tie scarves in pretty and varied ways, and go that way instead of hats or--god forbid!--wigs. I found a place on line that specializes in scarves for Orthodox Jewish women, and it has the most beautiful stuff. There are a bunch of videos on YouTube on tying scarves, too, so I'll actually see how to do it instead of just reading about it.
Since you guys having EDs, too, you know how much the thought of gaining that much weight upsets me. Alarms me. Okay, petrifies me. Let's get off that subject again.
I didn't check my email once today. I'll bet my inbox has a zillion emails to go through. Let's go see. . .
Take care of yourselves, my friends. I think about each and every one of you daily. Soon I'll get back to the informational posts. I've been too under the weather to do much real thinking. But I'm planning on getting better, so you'll just have to put up with it! :~)
Only the weight bothers me, and it bothers me to the point of terror when I think about it. Therefore, I've blocked it from my mind.
They ran some blood tests. One is to make sure that genetically, I can take the chemo without problems. Another was to get a baseline blood value to watch how it is affecting my body. They checked my anemia again. It was remaining stable at 10, which isn't normal, but is damn good compared to before. No transfusion necessary. They also were re-checking my liver values, which were abnormal.
My protein and albumen were exceedingly low. I was startled, and asked how that could be if I were taking in over twice what is required for a woman my age and weight? The Big Guy said that the disease was causing malabsorption, and I wasn't getting much of the nutrition, including protein, that I was eating. He expected that once the inflammation was under control, I'd be able to use the protein again. Then my horrendous edema would go away. By looking at me, he estimated my weight as 100 or so. I told him I thought that was right, and that I'd been very good about trying to gain weight. But my weight on the scale was 121. Eleven pounds of water. That's gonna be some piss-fest once it starts to go.
He also said I should go back to eating normal food, and don't have to be on the low-fiber/residue diet. He said if it were going to work, it already would have. He said he didn't put patients on it except post-op. I was grateful for that, as you might imagine. I'm thinking of all the things I can cook/eat now. I'm pretty sure I'll make sloppy joes tomorrow. Chili the next day. I'll lay off hot peppers, cayenne, etc., since I know they irritate me even under the best of circumstances. He said if there's a food which bothers you once you go back to normal eating, just avoid that.
I have the fixin's for a nice pot roast, or maybe beef stew, here. I would have made them anyway, only with peeled potatoes and no peas, etc. Now I can have them the usual way.
Let's pray this works. If it does, I'll be overjoyed. Maybe I can even go to bed and sleep for several hours. I long to do that. Just so, so, exhausted and weak.
Chick hasn't been on his bicycle for a few days. I've loved having him home. I feel safe, secure, warm, etc. What's weird is that usually he's watching movies or painting, and I'm reading either a book or on line. So we're not constantly interacting or anything. It's just comforting and wonderful to have him here.
It was very odd to hear about the earthquake back east. My god! That's what happens here, not there. Then there was one in Colorado, I believe, around the same magnitude, today. WTH?? Scorching heat, which killed people from a variety of states; fires, tornadoes. No wonder some people believe the world will end in 2012. Spooky.
If I go bald, or nearly so, I'm going to learn how to tie scarves in pretty and varied ways, and go that way instead of hats or--god forbid!--wigs. I found a place on line that specializes in scarves for Orthodox Jewish women, and it has the most beautiful stuff. There are a bunch of videos on YouTube on tying scarves, too, so I'll actually see how to do it instead of just reading about it.
Since you guys having EDs, too, you know how much the thought of gaining that much weight upsets me. Alarms me. Okay, petrifies me. Let's get off that subject again.
I didn't check my email once today. I'll bet my inbox has a zillion emails to go through. Let's go see. . .
Take care of yourselves, my friends. I think about each and every one of you daily. Soon I'll get back to the informational posts. I've been too under the weather to do much real thinking. But I'm planning on getting better, so you'll just have to put up with it! :~)
Saturday, August 20, 2011
Just saying goodnight or good morning.
It's almost 1 a.m. here, which makes it Saturday. Chick's beloved bicycle died Wednesday so he bought another one and tested it today. Oh no, no fancy schmancy thing with skinny tires and hardly any seat and 20 gears, etc. Just a common, plain bike like we rode as kids. I don't know if he's going to be riding his 15-20 miles on it every day--it looks kind of heavy. But he's strong. His hip was really bad today so he said he read under a tree by the river for a few hours instead of riding. Then he rode to the park near our apartment and played bocce ball. Such an old man! lol
In weight, I ate more than six pounds of food today. Yeah, hard to believe. I'm sort of in shock. And I'll have more food in about an hour or two. That's over 24 hours, though, because as you know, I don't really sleep, and don't ever go to bed because of my bum problems. My therapist, who I saw today, didn't believe me, saying that anorexics are notoriously inaccurate about their food intake. I replied that when I eat a 2-lb. container of cottage cheese, a 1 1/2 lb. whole piece of pork tenderloin, and two 15-oz. cans of peach chunks in heavy syrup--plus two DINNER plates of pasta salad (olive oil, not mayonnaise)--it's pretty damn accurate. I wonder if there's something that irritates me more than 1. injustice 2. essentially being called a liar.
The bowel troubles continue with lots of bleeding. Lots. Had the blood tests for the specialist who's squeezing me in Tuesday morning. They're considering steroids, but not until they give a few more tweaks to this safer regimen. God, I hate the thought of them.
I've been reading fiction like a maniac lately, at least one book a day, but usually close to two. The one I just started is really good--a medical thriller. I love that genre, especially when I'm dealing with hospitals. It would be very easy to squirt a bit of deadly, normally undetectable, drugs into my IV line when I get a transfusion. A psychopathic nurse who's been doing "mercy" killings on his/her own for several years just might do that.
If you don't see me for a long time here, you'll know what happened. :~)
Work left me alone for the past few days. I was getting quite pissed off. This is a medical leave of absence, not a vacation. I'm to have NO stress and was clearly told that doing any work for my employer was off the table. I know that it's a pain to figure out what they're supposed to be doing, as well as how to do it, operate the machines, use the databases, and whatnot, but if I'd died, they'd have to get a clue without me. So don't bug me. I explained this to my supervisor and I think he understands. But if he starts up again, I'll have to get much sterner. I'll never get better if I have to worry about work, too.
Oh, backing up. That cottage cheese intake baffles me. The only dairy I even like is yogurt, and that's only ONE brand. No substitutions. Lots of living bacteria and organic. Anything else--ugh. Why I asked Chick to bring some home is beyond me. I also poured a scheiss-load of sugar on it in order to get it down my throat, which is just as weird since I'm not normally much of a sweet eater. I'm not saying never, just not a regular sweet eater. I don't think I've ever eaten desert after a meal, for instance. I don't crave that, or don't think I do. Let's see what happens tomorrow. He brought home two containers, so I still have one left. I know he won't eat it since he has lactose intolerance (quite severe).
I have to make more Greek pasta salad tomorrow. Maybe I can convince him to go to the grocery store. I just hate to ask him. He did my laundry for me today. I'm getting way, way, beyond spoiled from all he's done for me this summer. He's always treated me like a queen, but this is incredible. The guilt I feel.
I wish I had something funny or uplifting to leave you with right now. I'll try to think of something for tomorrow. I believe I've read everyone's blog now, and commented when appropriate.
Off to sit in a lay-z-boy and continue reading about a virulent, biological weapon (a mutated Marburg/Ebola virus) released into the room when the President is giving his state of the union address. Every member of the legislature, Supreme Court, cabinet, executive branch, plus about 300 journalists, special invitees, et al., has been exposed to it--except one. And only one scientist has a chance at reversing it--an alleged terrorist, held in isolation at a maximum security prison in the Rockies. He was one of the engineers of the virus, and was working on an antidote when arrested. Can he discover a cure in time? And will the group which claims credit for the attack--Genesis--provide the antidote they claim to have if the president meets their terms?
See you guys tomorrow.
In weight, I ate more than six pounds of food today. Yeah, hard to believe. I'm sort of in shock. And I'll have more food in about an hour or two. That's over 24 hours, though, because as you know, I don't really sleep, and don't ever go to bed because of my bum problems. My therapist, who I saw today, didn't believe me, saying that anorexics are notoriously inaccurate about their food intake. I replied that when I eat a 2-lb. container of cottage cheese, a 1 1/2 lb. whole piece of pork tenderloin, and two 15-oz. cans of peach chunks in heavy syrup--plus two DINNER plates of pasta salad (olive oil, not mayonnaise)--it's pretty damn accurate. I wonder if there's something that irritates me more than 1. injustice 2. essentially being called a liar.
The bowel troubles continue with lots of bleeding. Lots. Had the blood tests for the specialist who's squeezing me in Tuesday morning. They're considering steroids, but not until they give a few more tweaks to this safer regimen. God, I hate the thought of them.
I've been reading fiction like a maniac lately, at least one book a day, but usually close to two. The one I just started is really good--a medical thriller. I love that genre, especially when I'm dealing with hospitals. It would be very easy to squirt a bit of deadly, normally undetectable, drugs into my IV line when I get a transfusion. A psychopathic nurse who's been doing "mercy" killings on his/her own for several years just might do that.
If you don't see me for a long time here, you'll know what happened. :~)
Work left me alone for the past few days. I was getting quite pissed off. This is a medical leave of absence, not a vacation. I'm to have NO stress and was clearly told that doing any work for my employer was off the table. I know that it's a pain to figure out what they're supposed to be doing, as well as how to do it, operate the machines, use the databases, and whatnot, but if I'd died, they'd have to get a clue without me. So don't bug me. I explained this to my supervisor and I think he understands. But if he starts up again, I'll have to get much sterner. I'll never get better if I have to worry about work, too.
Oh, backing up. That cottage cheese intake baffles me. The only dairy I even like is yogurt, and that's only ONE brand. No substitutions. Lots of living bacteria and organic. Anything else--ugh. Why I asked Chick to bring some home is beyond me. I also poured a scheiss-load of sugar on it in order to get it down my throat, which is just as weird since I'm not normally much of a sweet eater. I'm not saying never, just not a regular sweet eater. I don't think I've ever eaten desert after a meal, for instance. I don't crave that, or don't think I do. Let's see what happens tomorrow. He brought home two containers, so I still have one left. I know he won't eat it since he has lactose intolerance (quite severe).
I have to make more Greek pasta salad tomorrow. Maybe I can convince him to go to the grocery store. I just hate to ask him. He did my laundry for me today. I'm getting way, way, beyond spoiled from all he's done for me this summer. He's always treated me like a queen, but this is incredible. The guilt I feel.
I wish I had something funny or uplifting to leave you with right now. I'll try to think of something for tomorrow. I believe I've read everyone's blog now, and commented when appropriate.
Off to sit in a lay-z-boy and continue reading about a virulent, biological weapon (a mutated Marburg/Ebola virus) released into the room when the President is giving his state of the union address. Every member of the legislature, Supreme Court, cabinet, executive branch, plus about 300 journalists, special invitees, et al., has been exposed to it--except one. And only one scientist has a chance at reversing it--an alleged terrorist, held in isolation at a maximum security prison in the Rockies. He was one of the engineers of the virus, and was working on an antidote when arrested. Can he discover a cure in time? And will the group which claims credit for the attack--Genesis--provide the antidote they claim to have if the president meets their terms?
See you guys tomorrow.
Monday, August 15, 2011
Nothing much.
Hi, guys. I've been reading your blogs again, which is a lot of fun, except for when you have troubles. Otherwise, I enjoy reading your thoughts and your opinions--what things are meaningful in your lives--and especially how you view the world.
Got my two pints of blood on Wednesday. The appointment was for 1 p.m., so we arrived at 12:45 to try to be the first in line. It worked! It was sad, though, since non-emergency transfusions are given in the oncology building where they do chemo. Everyone else in there, as far as I could see, was a chemo patient of long standing. No hair; emaciated, etc. Oddly, there was only one woman. I heard two nurses discussing Taxol, so she was a breast cancer patient, and had to be post-menopausal. The man next to me had both his daughter and his son there to keep him company, and a third son showed up later, probably after work. The support of his children...He must be a much-loved father to them.
Anyway, each pint (two) took over two hours to drip. Then they made me wait a half hour to make sure I didn't have transfusion shock or whatever it's called. They're very, very careful, which I appreciated, but I thought I'd never get out of there. Chef drove me, and I asked him to just drop me off and come back later. He refused. Instead, he sat beside me, reading a book, the whole time. It felt good to have him there, but I felt guilty. He's been taking such good care of me--too much. I feel as though I ruined his summer with all of my medical appointments, but he said I'd do the same for him. That was optimistic! lol I read a book, too, and the time passed better than it might have otherwise. But we didn't get home until around 5:30. I did nothing, but was exhausted. The chair was so bad that it triggered my back pain. (I broke some vertebrae and herniated two disks in a diving accident in college. I also broke three vertebrae in my neck. As Chef always says, I should be happy I didn't die, which is true, or be paralyzed forever. (I was, for about 24 hours. It was terrifying.)
Chef went grocery shopping and bought me some liver, beef tenderloin, and pork tenderloin. We had liver and onions that night, then I had red meat cooked off to chip at for the rest of the week. You don't have to have expensive cuts of meat to improve anemia. Cheap cuts will do just as well, in strengthening my blood. But he knows I don't care much for meat except ground beef and a few other cuts of meat.
I've been reading medical thrillers one right after the other. I love them, and with my current distaste for everything medical, they satisfy my need to see the death and destruction of hospitals. I get all of them from Amazon, used. They come in cheap, sometimes as little as a penny plus shipping.
I really don't have much to say. Sorry. I'll see you again, with nothing to say then, either. LOL
Got my two pints of blood on Wednesday. The appointment was for 1 p.m., so we arrived at 12:45 to try to be the first in line. It worked! It was sad, though, since non-emergency transfusions are given in the oncology building where they do chemo. Everyone else in there, as far as I could see, was a chemo patient of long standing. No hair; emaciated, etc. Oddly, there was only one woman. I heard two nurses discussing Taxol, so she was a breast cancer patient, and had to be post-menopausal. The man next to me had both his daughter and his son there to keep him company, and a third son showed up later, probably after work. The support of his children...He must be a much-loved father to them.
Anyway, each pint (two) took over two hours to drip. Then they made me wait a half hour to make sure I didn't have transfusion shock or whatever it's called. They're very, very careful, which I appreciated, but I thought I'd never get out of there. Chef drove me, and I asked him to just drop me off and come back later. He refused. Instead, he sat beside me, reading a book, the whole time. It felt good to have him there, but I felt guilty. He's been taking such good care of me--too much. I feel as though I ruined his summer with all of my medical appointments, but he said I'd do the same for him. That was optimistic! lol I read a book, too, and the time passed better than it might have otherwise. But we didn't get home until around 5:30. I did nothing, but was exhausted. The chair was so bad that it triggered my back pain. (I broke some vertebrae and herniated two disks in a diving accident in college. I also broke three vertebrae in my neck. As Chef always says, I should be happy I didn't die, which is true, or be paralyzed forever. (I was, for about 24 hours. It was terrifying.)
Chef went grocery shopping and bought me some liver, beef tenderloin, and pork tenderloin. We had liver and onions that night, then I had red meat cooked off to chip at for the rest of the week. You don't have to have expensive cuts of meat to improve anemia. Cheap cuts will do just as well, in strengthening my blood. But he knows I don't care much for meat except ground beef and a few other cuts of meat.
I've been reading medical thrillers one right after the other. I love them, and with my current distaste for everything medical, they satisfy my need to see the death and destruction of hospitals. I get all of them from Amazon, used. They come in cheap, sometimes as little as a penny plus shipping.
I really don't have much to say. Sorry. I'll see you again, with nothing to say then, either. LOL
Wednesday, August 10, 2011
Man, I've done it again.
I've been well enough to have posted here every day, but got so back-logged on reading yours that I'd say to myself, "Self, don't worry about it. You can post after you're done reading." Obviously, I didn't. Part of that is that I have nothing much to say. I haven't done any reading or research on our eating disorders, and that's the whole purpose of this. It's evolved into a personal blah-blah-blah about me, which bores me to death. Nothing happens in my life as it does in all of yours. Oh, well.
I have to get two pints of blood at 1 p.m. today. Each pint takes 1 1/2 - 2 hours to deliver. Chick is going to have to wait there, reading, because I can't drive myself. Still too dizzy--and a bit confused--to drive. Shit. What happened is that my UC became worse, and apparently I've been have a lot of bleeding. I've only noticed it two or three times, but it must be happening in a more occult way, too. My count was very low a couple of weeks ago, and my family doc said that I met the criteria for transfusion; however, he said we could try heavy iron supplements and red meat to see if that would take care of it. I liked that idea better. But I had a CBC Monday, and the red blood cell count had dropped, not even stayed stable. He called me Monday night (he's never called me in 20 years) and told me it was time for a transfusion.
I should have much more energy, get rid of the dizziness, get my brain unfuzzed, etc., immediately after. It's like giving a thirsty person water. Instant satisfaction. I sure hope this pumps up the count, and that the colitis quiets down, so that this doesn't become routine. And then I can go back to work.
Been reading a lot of fiction for the past few weeks, which isn't common for me. Generally, I read non-fiction. I forgot how much fun it is. I'll be taking two books with me for the transfusion. They're both large print, so no matter how thick they are, they're fast reads. I'm halfway through one and don't want to be caught without anything to read while I sit there.
Okay. Gonna eat something before I go. You guys take care of yourselves, yes? I hope to see you later.
I have to get two pints of blood at 1 p.m. today. Each pint takes 1 1/2 - 2 hours to deliver. Chick is going to have to wait there, reading, because I can't drive myself. Still too dizzy--and a bit confused--to drive. Shit. What happened is that my UC became worse, and apparently I've been have a lot of bleeding. I've only noticed it two or three times, but it must be happening in a more occult way, too. My count was very low a couple of weeks ago, and my family doc said that I met the criteria for transfusion; however, he said we could try heavy iron supplements and red meat to see if that would take care of it. I liked that idea better. But I had a CBC Monday, and the red blood cell count had dropped, not even stayed stable. He called me Monday night (he's never called me in 20 years) and told me it was time for a transfusion.
I should have much more energy, get rid of the dizziness, get my brain unfuzzed, etc., immediately after. It's like giving a thirsty person water. Instant satisfaction. I sure hope this pumps up the count, and that the colitis quiets down, so that this doesn't become routine. And then I can go back to work.
Been reading a lot of fiction for the past few weeks, which isn't common for me. Generally, I read non-fiction. I forgot how much fun it is. I'll be taking two books with me for the transfusion. They're both large print, so no matter how thick they are, they're fast reads. I'm halfway through one and don't want to be caught without anything to read while I sit there.
Okay. Gonna eat something before I go. You guys take care of yourselves, yes? I hope to see you later.
Saturday, July 30, 2011
I made a decision, and it was terribly difficult.
Since I already knew that stress could trigger all of the medical problems I'm having, I tried my best this summer to do meditation, creative visualization, relaxation exercises, and so on, in order to help heal. But there was always the Aug. 10 deadline in my mind--the first day of our returning to work. I had to be better by then. Since Chick had no job nor health insurance, it was up to me. I was just desperate to go into remission from everything by now. But such was not to be. In fact, today I'm having a worse flare than for the previous two or three weeks.
I saw my therapist Friday. He saw that I could barely walk, and the look of severe pain on my face. He saw my extreme fatigue. Finally, he asked if I were going to call my docs to obtain medical support for a medical leave of absence. I didn't answer. I just couldn't bring myself to give up. So we talked for a while, and I knew I had to do it. So I called the GI specialist's and left a message; sent an email to my family doc, and sent an email to my principal to tell them I needed a medical leave. My principal has no clue whatsoever that I've been ill in any way, and I'm not giving her much time to scramble for coverage. I've been checking in to things meantime. I don't qualify for state disability because since they cut my hours back at work to save money, I didn't make enough in the past 12 months. However, if I get an FMLA leave, my employer has to hold my job open for me and pay my health insurance premiums for three months. If I can get better in that amount of time, everything will be fine. If not? We're screwed.
I'm in a lot of pain today. On a scale of 1-10, it's about an 8 or 8.5. Obviously, nothing but narcotics can eradicate that level, but so far, I'm refusing. I might have to take something so that I can get some sleep, though, if I'm not waking up twice an hour to go to the bathroom.
Yes, more whining. Part of me, once I made the decision to take the leave, felt as though the weight of the world had been lifted from my shoulders. Another part is scared. The one who's talking to you right now is extremely sad.
Here's hoping that tomorrow I'll be in a better mood for you guys.
Briefly, I had a hankering for what I call my Greek Pasta salad. Pasta, seeded tomatoes cut into strips, Kalamata olives, feta cheese, artichoke hearts, red onion, and a dressing of olive oil/sunflower oil with basil and oregano. I made it yesterday and ate two servings today. I still have a bunch left over. It's not as low-fiber as it should be, but it's close. I had to leave out some of the things I wanted due to fiber, but it still tastes great. Any other olive and feta fans out there? Come on over and we'll share.
I saw my therapist Friday. He saw that I could barely walk, and the look of severe pain on my face. He saw my extreme fatigue. Finally, he asked if I were going to call my docs to obtain medical support for a medical leave of absence. I didn't answer. I just couldn't bring myself to give up. So we talked for a while, and I knew I had to do it. So I called the GI specialist's and left a message; sent an email to my family doc, and sent an email to my principal to tell them I needed a medical leave. My principal has no clue whatsoever that I've been ill in any way, and I'm not giving her much time to scramble for coverage. I've been checking in to things meantime. I don't qualify for state disability because since they cut my hours back at work to save money, I didn't make enough in the past 12 months. However, if I get an FMLA leave, my employer has to hold my job open for me and pay my health insurance premiums for three months. If I can get better in that amount of time, everything will be fine. If not? We're screwed.
I'm in a lot of pain today. On a scale of 1-10, it's about an 8 or 8.5. Obviously, nothing but narcotics can eradicate that level, but so far, I'm refusing. I might have to take something so that I can get some sleep, though, if I'm not waking up twice an hour to go to the bathroom.
Yes, more whining. Part of me, once I made the decision to take the leave, felt as though the weight of the world had been lifted from my shoulders. Another part is scared. The one who's talking to you right now is extremely sad.
Here's hoping that tomorrow I'll be in a better mood for you guys.
Briefly, I had a hankering for what I call my Greek Pasta salad. Pasta, seeded tomatoes cut into strips, Kalamata olives, feta cheese, artichoke hearts, red onion, and a dressing of olive oil/sunflower oil with basil and oregano. I made it yesterday and ate two servings today. I still have a bunch left over. It's not as low-fiber as it should be, but it's close. I had to leave out some of the things I wanted due to fiber, but it still tastes great. Any other olive and feta fans out there? Come on over and we'll share.
Thursday, July 28, 2011
Hi, guys.
I don't know how many of you still have links to my blog. I wouldn't blame you if you've dumped me, but I'm going to try to briefly catch you up on what's been going on.
I believe I told you that they were quite suspicious that I had colon cancer. Finally they diagnosed me as having ulcerative colitis (UC), a chronic, serious, irritable bowel disease (IBD). It has been life-changing. It's not caused by stress; however, it's made worse by stress. I think that's why it started to flare up before the summer break, when I was having so much trouble at work. I haven't needed any more transfusions lately, but they'll do at least one if my severely bad anemia doesn't improve by August 15.
They tested for everything. Celiac disease; gluten intolerance; a whole host of food allergies, parasites and bacterial infections, and so on. All were negative. They guessed it was Crohn's Disease before the biopsies came back. I don't know which would be worse to have. It's kind of crazy to try to compare illnesses, don't you think?
They want me to gain 10 to 20 pounds. I've tried. There's no way to tell if my gain of nearly 10 pounds is fat or water. My edema is horrible. In the middle of my right leg, I sprung a leak, so to speak, and water runs down my leg constantly, soaking my shoe. I was protein deficient, so I've had to push it, and have been successful with that. But it might be weeks before the swelling goes down.
The beginning of fall semester is close at hand, and it seems as though unless there's a miracle, I won't be able to make it. I'm a nervous wreck. We need the money badly, and the health insurance even more. Under federal law, we're allowed to pay for health insurance ourselves for 18 months. That will pretty well destroy what little savings we have. Oh, well. This has happened twice before during our marriage, which is why it seems as though we'll never be able to retire. We'll just have to get over it.
Then I got excruciating pain in my left groin and where my femur joins my hip socket. This started over a week ago. Some days it was better, so I figured I'd strained or pulled a muscle somehow. As it turns out, it's arthritis. I've always had a little osteoarthritis there, but it never was debilitating, and NEVER caused this kind of pain. I can barely walk. So my health has kind of fucked up my whole summer. My great and good spouse has driven me all over god's creation to doctors and tests, plus cooked for me and otherwise taken so much care of me. He's a saint, I think.
I've been, therefore, in lots of pain. I put myself on a high protein, high calorie, low fiber, low residue diet. I figured that if I could "rest" my bowel, it would have some time to heal and throw me into a remission. When I saw the dietician, she said I'd developed a terrific eating plan, and only gave me a few tips to add. She also said I don't need to see her again unless some problem comes up. It was nice to be supported and listened to.
I think that's pretty much it on the health front.
I'm so disappointed that Allan no longer blogs. I very much looked forward to reading his blog at least until the end of Phase Six. He inspired me, and so many others. I hope that he changes his mind at some point. I miss him terribly.
I've been so sick that I haven't even been able to keep up with your blogs, but started today. It'll take a while, that's for sure, but will be worth it.
I'm going to give it my best to write daily or at least every other day. Oh! I cut my hair, or rather Chick cut it. It's only to my shoulders. I'd had it to my waist, then to mid-back, then bra strap length, and now as short as I'll take it. I look awful with short hair.
Okay. I just wanted to let you know I'm back; what's been happening with my health, etc. I'm very happy about reading you guys again! I hope to find out that you're doing well and are happy. xo
I believe I told you that they were quite suspicious that I had colon cancer. Finally they diagnosed me as having ulcerative colitis (UC), a chronic, serious, irritable bowel disease (IBD). It has been life-changing. It's not caused by stress; however, it's made worse by stress. I think that's why it started to flare up before the summer break, when I was having so much trouble at work. I haven't needed any more transfusions lately, but they'll do at least one if my severely bad anemia doesn't improve by August 15.
They tested for everything. Celiac disease; gluten intolerance; a whole host of food allergies, parasites and bacterial infections, and so on. All were negative. They guessed it was Crohn's Disease before the biopsies came back. I don't know which would be worse to have. It's kind of crazy to try to compare illnesses, don't you think?
They want me to gain 10 to 20 pounds. I've tried. There's no way to tell if my gain of nearly 10 pounds is fat or water. My edema is horrible. In the middle of my right leg, I sprung a leak, so to speak, and water runs down my leg constantly, soaking my shoe. I was protein deficient, so I've had to push it, and have been successful with that. But it might be weeks before the swelling goes down.
The beginning of fall semester is close at hand, and it seems as though unless there's a miracle, I won't be able to make it. I'm a nervous wreck. We need the money badly, and the health insurance even more. Under federal law, we're allowed to pay for health insurance ourselves for 18 months. That will pretty well destroy what little savings we have. Oh, well. This has happened twice before during our marriage, which is why it seems as though we'll never be able to retire. We'll just have to get over it.
Then I got excruciating pain in my left groin and where my femur joins my hip socket. This started over a week ago. Some days it was better, so I figured I'd strained or pulled a muscle somehow. As it turns out, it's arthritis. I've always had a little osteoarthritis there, but it never was debilitating, and NEVER caused this kind of pain. I can barely walk. So my health has kind of fucked up my whole summer. My great and good spouse has driven me all over god's creation to doctors and tests, plus cooked for me and otherwise taken so much care of me. He's a saint, I think.
I've been, therefore, in lots of pain. I put myself on a high protein, high calorie, low fiber, low residue diet. I figured that if I could "rest" my bowel, it would have some time to heal and throw me into a remission. When I saw the dietician, she said I'd developed a terrific eating plan, and only gave me a few tips to add. She also said I don't need to see her again unless some problem comes up. It was nice to be supported and listened to.
I think that's pretty much it on the health front.
I'm so disappointed that Allan no longer blogs. I very much looked forward to reading his blog at least until the end of Phase Six. He inspired me, and so many others. I hope that he changes his mind at some point. I miss him terribly.
I've been so sick that I haven't even been able to keep up with your blogs, but started today. It'll take a while, that's for sure, but will be worth it.
I'm going to give it my best to write daily or at least every other day. Oh! I cut my hair, or rather Chick cut it. It's only to my shoulders. I'd had it to my waist, then to mid-back, then bra strap length, and now as short as I'll take it. I look awful with short hair.
Okay. I just wanted to let you know I'm back; what's been happening with my health, etc. I'm very happy about reading you guys again! I hope to find out that you're doing well and are happy. xo
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