Thursday, April 26, 2012
o/` "The anorexic chicks, the model 6
They don't hold no weight with me
Well 8 or 9, well that's just fine
But I like to hold something I can see" o/`
-- "Perfect Ten" by Beautiful South
Now doubt this is going to make some people mad; they're going to think I've given up or given in. That is not the case and never will be; I've just let go of the need to be thin and acknowledged that I never will be. Now I am learning to love my body at whatever size it settles as long as the medically based evidence --- not the scale --- says I am healthy and well.
The regimen is called Health at Every Size (Linda Bacon wrote a very good book on it but she isn't the only qualified professional to embrace the ideas behind it). Simply put, it involves living well: making good eating choices, learning to listen to your body cues, and moving your body for the joy of it not because you feel you have to lose weight.
I'm tired of fighting myself for basic sustenance. I think I mentioned before that I've had an eating disorder since I was in my teens of the anorexic type (no binging and purging even though I'm the token fat chick) and the doctors have had me on diets ranging from 900 to 1200 calories with a rigid exercise program since I was nine years old.
What do I have to show for it? I have a metabolism which can no longer burn the energy it does get. I have a phobia of eating --- no matter what I choose, one of those professionals is going to berate me for having eaten it or for how much of it gets eaten. I have autoimmune disorders and digestive problems.
I have a doctor who frankly told me that he didn't feel like treating me because fat people are a waste of time.
I've had enough: enough of people telling me what I should look like, what I should eat, what I should be doing to disappear or fit into their standards of beauty and health. My numbers --- the actual science behind the health --- looked beautiful until I developed the malabsorbtion problem. Just now the A1C, which had been in the low normal range, is climbing because I'm not absorbing any nutrients from my food and the medications which give me a metabolism aren't staying in system long enough to do their job. My cholesterol and triglycerides continue to decline, going closer to normal with each lab draw. My blood pressure is in the low normal range, provided they don't squeeze both arms trying to get a pressure.
By the science, I'm healthier than many thin people. By the scale, I'm a complete failure.
Just guess which way it's time to turn.
They're still yelling at me about my food consumption; the more they yell, the more paranoid about food I get and the less I eat. At one point I turned my food journal over to my girlfriend Dorie and to Dee as added proof to these morons that I certainly wasn't cheating.
They didn't look at them. I think they didn't look at them because it would have been proof that they were wrong about the assumptions they made regarding my weight and regarding me as a person.
Being fat doesn't mean you forfeit your personhood. You have the right to accurate, adequate medical treatment given sensitively and with compassion and without the use of weight as a means of shaming you about your health.
I'm seeing a nutritionist who embraces this concept in June and am hoping she can direct me to some more compassionate doctors who can actually fix my ills without trying to blame them all on fat (FYI: not one ailment is fat or weight related; they're all genetic). I am hoping she can restore a positive relationship with food too. I miss it.
I should not have to feel guilty about eating freshly prepared raw ingredients bought from the farmer's market, but I do and that's just sad.
Their oath says, "First do no harm."
I think they failed.
Monday, August 02, 2010
o/` "We will never be a nuclear family
But a rainbow will begin at our feet
And if you take my hand
Beware that this boat can
Run aground making the ocean floor weep" o/`
-- "Pageant of the Bizarre" performed by Zero 7
It's been a while. Dorie and her brother Dee have been living with us for almost three months now and I couldn't be happier. Under her careful and tactful direction, the house has gradually become presentable. We just steam cleaned the carpet in the living room and rearranged the furniture. This is the first time in almost a year it's been usable. Generally the couch was piled high with clothes, old grocery bags, and other debris and the area itself accumulated boxes and junk. I now have a nice little reading corner with a view through the oak of the hummingbird feeder.
I hadn't realized when I invited Dorie to be part of our family that I would be getting an entire family. The Cajuns are tight, almost clan-like and readily absorb those who attach themselves to their members. Dee's brother Callistus, who works for the Civil Engineering Corps down in New Orleans, comes up here when he can and helps with the outdoor maintenance (he thinks he can fix our drainage problems and build a deck to which I'll have access as well as a ramp). I misremember which of them --- Dee or Callistus --- had custody of their youngest sister, Lix, but she's come to live with me too. I'm home schooling her; she's really too bright and sensitive to have the Florida public school system inflicted on her (having already been expelled in Louisiana). There are new friends as well --- Dee's co-workers, friends of the family, Callistus' co-workers... I am unused to having so many people care for and about me but oddly grateful.
I gradually realized that obsessing on the weight goal wasn't going to help matters much. I eat what Dorie gives me and I move around on my own when I'm capable of doing so. Recently Dee, together with one of his co-workers, suggested using hand weights and put together a program for me modified from a physical therapy routine. It includes yoga poses which can be done in a chair. I wish I knew whether or not the weight loss was healthy, though. I still don't have many food items I can safely eat without getting sick.
The foods I can eat seem rather bizarre: mashed potatoes, clam chowder, Tuscan bean soup, a kind of Cajun corn stew, hot and sour soup. We tried sandwiches and then just the meat and cheese but that didn't go over too well. I still can't eat most vegetables or meats unless I want to be in a world of hurt.
At least I'm keeping active and we're going on vacation soon. I love my trips out west, they're revitalizing. We've been dehydrating meals to take with us. So far we've done lentils and carmelized onions, lentils with rice, Tuscan bean soup, and chicken lentil stew. I'm really, really impressed. I never thought I'd actually get my money's worth out of that thing but I'm being proven wrong.
Also, I've discovered that sweets and home baked goods do not apparently make you fat if eaten in moderation or home baked. I begin to wonder if it isn't the use of processed foods and preservatives which doesn't contribute. Dorie's made orange rolls, cinnamon rolls, brownies, key lime pies, and ginger cookies in addition to her more traditional and healthier fare. She uses whole wheat flours and I've certainly eaten my share, if not more...but none of us are getting fat. In fact, as the ticker indicates, I've lost weight. I'm within about seven pounds of my first goal.
We had to wipe my computer and get rid of Vista; it had ground to a halt and flat-out quit working. I'm much happier with XP back on it and it runs great, like having a new computer entirely! One of the items I put back on it is Google's photograph utility, which has facial recognition. We have about ten years' worth of digital photos stored on the house server and I was pleasantly surprised to find so many of them have me smiling in it. Ten years' worth of smiles....a beautiful thing. I plan on printing out some of the montage and pasting it to my collage in order to remind me of that.
I've started a photo blog over on Tumblr under the same name. I haven't been terribly good about keeping up with it, not since I got out of the hospital, but I think I might start working on it again. I finally got most of my writing files over on my main web site re-linked too. Right now they're only getting spam comments but at least the search engines can find them.
I also started marketing my jewelry. The shop is called Crazy Coyote Creations and is on Etsy. Again, no bites but I'm hoping that might eventually change.
For some reason, my husband is irritating me. Really, there's no need to bray like a jackass so that I can hear you laughing clear on the other end of the house.
Lebanese fish stew for dinner tonight. This should taste good and the pasta is whole wheat.
Saturday, May 22, 2010
o/` "He said: "I was in my early forties,
"With a lot of life before me,
"An' a moment came that stopped me on a dime.
"I spent most of the next days,
"Looking at the x-rays,
"An' talking 'bout the options an' talkin’ ‘bout sweet time."
I asked him when it sank in,
That this might really be the real end?
How’s it hit you when you get that kind of news?
Man whatcha do?
"An' he said: "I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'." " o/`
-- "Live Like You Were Dying" performed by Tim McGraw
I just spent a five day stay in the hospital. A few weeks ago I banged my hip on a counter top. With a normal person this wouldn't matter but with someone who has Ehlers-Danlos, it's potentially dangerous. The bruise went into the deep tissues and festered, causing an abscess. When I went to the doctor, he gave me an antibiotic and told me to ice it for the pain. When it wasn't better in a week, I got sent to my dermatologist. He changed the antibiotic and told me to keep icing it.
A day later it finally burst but I knew something was wrong. The discharge didn't look right and didn't smell right. I made an appointment with my regular physician, who sent me directly to the ER. The ER turfed us to the hallways with the drunks and the drug addicts, deeming the problem non life threatening.
They were wrong. I had a necrotizing fascitis.
The next day I had surgery to remove the affected tissue. I now have a 4x2x3cm hole in my side which will take a long time to heal. The IV antibiotics saved my life and luckily this particular form of bacteria is one which is sensitive to oral antibiotics. It's a variant of staph which the infectious disease specialist had never seen before so I have to have a follow-up with him.
Now I'm finally home and recovering. I wonder how long I've been sick because my appetite is back. I can't eat many things --- soft squishy foods and clear liquids --- because the antibiotics really screw things up, but I'm hungry.
They also discovered a protein deficiency. There are some foods I just can't eat. There are others which are beneficial even though they 'ought' to be off limits. I'm losing a ton of water weight, having altered my diet to accommodate the deficiency. When I go in next, I'm to be checked for a B deficiency too.
Maybe things are finally getting back on track.
Additionally, my girlfriend is ready to leave her abusive husband. We're driving down to Cajun Country Memorial Day weekend to get her and bringing her back here to live. She'll help take care of the pets, the house...and me. Otherwise, I'd have been headed for a hospice and we'd have had to get rid of most of the pets an close up parts of the house. This is mutually beneficial to us all; she'll gain her freedom and her privacy and we'll gain a helpmate.
Her brother will be coming with us as well. He's a profiler, a good one, for a federal agency and they transferred him. He can either work from Tallahassee or from Jacksonville but hasn't decided out of which office he wants to work. Currently he's on medical leave so there's no rush.
All of my family...together in one place...and a possible solution to my weight issues.
Middle Eastern cuisine evidently agrees with me, which is how we discovered the protein deficiency. Eating Middle Eastern fixed a lot of my problems; I started feeling better and had a lot more energy.
This works, it does!
Sunday, April 25, 2010
o/` "This time I'm comin' down
And I hope you're thinking of me
As you lay down on your side
Now the drugs don't work
They just make you worse
But I know I'll see your face again" o/`
-- "The Drugs Don't Work" performed by The Verve
It's been hell. I mean it...pure, unadulterated hell.
After two visits to the pain specialist, we gave up on him. He was absolutely useless, keeps telling me that I'm too fat to benefit from any other treatment except drugs. On the last appointment, he prescribed me Nyucinta, a brand new morphine derivative which has been approved by the FDA for less than three months. It has a 50% serious side effect rate with 85% of those resulting in fatal complications. It's contraindicated for people with epilepsy and COPD, both of which I have.
I am also allergic to morphine. It's an inherited quirk; so are my Ma and sister.
I am still, after two months, waiting for a call back from the surgeon to make an appointment for consultation. I think I know what I want --- not reconstructive surgery but a TENS or EMS unit to mitigate the pain. Asking them to rebuild my back without my dying on the table or something else untoward happening would be ridiculous. It still needs a surgeon to install the device.
We did go to the springs so that I could swim. I had a wonderful time there, free of the chair and the crutches. The water is 72 degrees year 'round, which is cold even on a warm day, but I swam across the pool twice. This was a big thing for me; I have a deep seated fear of deep waters, things in the water, and water where I can't see bottom.
On the positive side, swimming seems to help my back and I love the freedom of movement. O the negative side, I hurt so bad over the next four days that I'm not sure the effort was really worth it.
The list of foods I can eat has gotten rapidly smaller. Most of it rapid cycles through the system or, on very bad days, even a simple sip of water will just run right back out my nose without making any effort to go down. I'm existing on protein shakes, crackers, and home made vegetable stock. The doctors are pleased with my progress on weight loss so I guess it's okay. They don't seem to care how much this hurts and how inconvenient it is. I hate having to explain in public why I'm not eating anything or having to rush away from an engagement because my digestive system has given up the ghost.
The chemotherapy only adds to the problems. The last batch, the needles were sharp and so the injections didn't hurt. This batch, the needles are dull. They don't penetrate the skin so easily and every time my husband gives me a shot, I scream and cry. I can't help it, it just hurts too much. I spend the rest of the night hanging over the side of the bed with my head in the trash basket.
My husband right now is doing three jobs: his job as system administrator, housekeeper, and caretaker. We've already begun discussing what will have to happen in the next year. Either we'll find someone to stay out here and take care of me and the house --- my girlfriend is trying but it might not work out --- or I will have to be put in a hospice. I do not want to leave my house.
It just doesn't seem to be our family's year. Dee recovered rapidly from his bone infection once the fever broke but then the unseasonal cold weather we've been having produced a late and violent 'flu, one which evidently wasn't covered by this year's vaccine. We thought for a while that was what made him sick but no....we couldn't be that lucky. It turned out to be a small bowel obstruction caused by a prior injury incurred on the job. More surgery and of course he's back in the hospital.
Please, please let this be the last time. Our family needs a break so badly.
Tuesday, February 16, 2010
o/` "I hurt myself today
To see if I still feel
I focus on the pain
The only thing that's real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything" o/`
-- "Hurt" performed by Johnny Cash
So...it's real. When I went to the endocrinologist, she confirmed thirty pounds gone. Trouble is, we don't know why and when you don't know why the body has lost weight --- and lost so much in only a short time --- there's usually trouble somewhere. My A1C and serum levels came back elevated but that's because I've been on a heavy duty antibiotic for the cellulitis in my leg. Some of the other values are just slightly elevated but not enough to be of concern. She doesn't know why I can't eat and what is causing the persistent nausea and tiredness but if it continues, we'll add another medication or insulin to the mix to see if it helps.
Yay, another shot and another special delivery medication...not.
I also finally got the MRI done on my back. It ought to have been done when I first reported the injury back in 2005 but my primary care physician's office is lazy and incompetent. It took them this long, they claim, to find an open MRI which would accommodate me.
The news wasn't good: degenerative spine disease with spinal stenosis on L3 and L4 and arthritis. The most likely culprite is, again, the Ehlers-Danlos Syndrome because it attacks the connective tissues. The only good news about this is that if it's attacking the connective tissues in the back, it will not be doing the same to the lungs and heart. The disease progresses one way or the other, not both.
I was then referred to a pain specialist. The 'specialist' barely spoke English and was obviously more accustomed to working with worker's comp and drug addicts. My paperwork included information on opiates and methadone but nothing on methods of treatment for spinal disease. They didn't have the MRI films, even though I called my primary care physician's office twice to ensure that they would have the films.
He, of course, blamed the damage on my weight. This completely ignores the fact that I've weighed this much and more since I was in high school and that the back injury and subsequent loss of mobility is fairly recent. He recommended gastric bypass (NOT an option because of the Ehlers-Danlos Syndrome) and then told me in the same breath that referral to a spine surgeon was pointless as the incision would not heal (BS - my side healed fairly quickly and that was a 6x10x4 inch HOLE). So...I'm too fat for a spine surgeon but you're willing to risk splitting my organs open and rupturing them for a FAT surgery which is dangerous and unnecessary and contraindicated?
The only thing I left the office with was a new cynicism regarding Florida's health care system and a suggestion that I use the maximum prescribed dosage of the Vicodin...after I told him I didn't want any more drugs. No mention of physical therapy, no referral to counseling (Um...you just told me that I will shortly be unable to do even the simplest things for myself and I'll lose all bowel and bladder control and you DON'T think I might be just a tad suicidal?), no alternatives offered. The Vicodin, at maximum dosage, produces hallucinations, vomiting, and a dopey state in which I recognize no one and can do nothing. I told him all this and still got nowhere.
We're supposed to go back in two weeks, when he might have the MRI films. I"m going to tell him then that upping pain medications is a no-go and he'damned well find a better way to help me. If I'm going to have to live in this chair, I want taught HOW to do so without becoming dependent on everyone else. If it's at all possible I want to retain what little walking ability I have and get physical therapy to relieve the pain and maintain function.
No drugs. No gastric bypass.
As if that's not enough...one of my family members is seriously ill, so much so that last night we thought we were going to lose him. The doctor came into his hospital room, checked his temperature, pulse, and heart, and then told us that either the fever would go down in the night or he'd have passed away by morning. I spent the entire night holding him --- we took turns but he fussed a lot if I went very far. He's still with us but still gravely ill.
What is it with food and appetite in our family? He's got a bone infection which they can't operate on until he can eat solid food, sit and stand on his own, and is lucid. He needs to put on a bit more weight as well because he's been ill so long he's rail thin and very weak. I could not persuade him to eat breakfast or lunch today, not even a few sips of broth. They'll opt for force feeding him soon if he doesn't start improving. He's okay with that (that is, he understands the possible need) but of course would rather not. Poor boy!
I'm tired. I'd love to curl up in the sun somewhere with a good book and some crackers, maybe some cheese, and a good wine. I don't have time. There are people to be cared for and arrangements to be made.
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