First before I get into this, a caveat: I do not like using my cerebral palsy is an excuse for being the way that I am . Because obviously there are plenty of weight normal people with cerebral palsy and plenty of weight and normal people in wheelchairs. On to the main topic.
I have been trying to figure out how to wrangle an inconsistency in discussing Lymphedema. It appears that if you are overweight, and you have some other factor in your medical past like radiation from cancer or an unknown as of yet predisposition to it, you are more likely to get Lymphedema. Therefore it seems to me that when someone begins to become overweight there are always discussions about high blood pressure, diabetes, cholesterol joint difficulties asthma, strokes and heart disease. You are told about them all the way along; you are warned that if you don’t get your act together these things could happen. Why isn’t Lymphedema part of those discussions in everyone’s wellness visit who shows signs of getting obese or is already there?
It is a down the road condition that affects more and more people. Those supporting and advocating for the Lymphedema Treatment Act say that it has many many more people living with Lymphedema then even are known. Of course there’s conflicting information some sources list it as a rare disease some sources list a really large number of folks with Lymphedema. Regardless I I want it talked about in every wellness visit of any person that might have it in their future just like diabetes just like high blood pressure just like strokes asthma or joint problems. It would take 2 additional seconds and it would least give us name to put your problem should it ever come up. And even if people hear it and don’t make changes it would be caught sooner if people knew what it was. I I had swollen legs for years and thought it was merely my bad eating choices and nothing else that were causing my legs to swell, so I never discussed it with my current doctors and they never mentioned it.,
For reasons that are endlessly debatable in my family and my circle of friends, ranging from no willpower coming to a diagnosis of insulin resistance, to addiction, I have not been able to get my act together. I am very overweight. The doctors all give me the simple one line answer that I have Lymphedema because I am fat. One even debated with me vigorously that it could have absolutely nothing to do with the fact that I had Hodgkins lymphoma a cancer of the lymph nodes back in the nineties. If I did not have radiation for the cancer that cancer in my lymph nodes could have had no effect on the processing of lymphatic fluid through the system 20 years later. Snark. They also have done one other thing. I’m ready to take mine, as far as heart disease, stroke, high blood pressure, and asthma, along with joint problems because I was told to expect them. Oh and type 2 diabetes if it ever shows up. I will then say to myself in my head,” well Flynn, what the heck did you expect given your eating habits of the last 40 years.?” Here’s the problem. I was never told about Lymphedema until 2012. I did not know what to expect. I did not know that once I got the Lymphedema losing weight became even more of a Sisyphean task pushing that boulder up a hill because the fluid retention makes you gain weight irrespective of what you eat and if you eat badly because of course you’re upset at your situation, it only gets worse. I would have liked to have known this was coming so then when it did I could say well what did you expect shrug and then move on and do what I could. I was not warned that this could happen to me simply because I was heavy.
The more information we have as patients the better outcomes we will have. It’s not our fault that Lymphedema is only discussed for 15 minutes during an 8 year long medical school career. It’s time to take it out of the disease closet dust it off and start talking about it.
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So, yes I’m right in the middle of another stupid emotional meltdown about the Latest Serious Medical Condition…and I’ve had two bad days of eating.
Not horribly bad or out of bounds…but beginning to head there.
It’s gotten to the point where that sort of eating can have a direct, fairly quick, negative impact on my lymphadema if there’s too much salt in the mix.
I am trying to do something different, when I screw up. I am trying not to let it be a permanent giving up. I don’t know why it’s so hard to get back on the “grilled chicken spinach salad egg white omelet bandwagon. Shouldn’t be, because I like the stuff.
Everybody was laughing on TV today when researchers stated that (white processed) sugar was as toxic as any other addictive substance and should be regulated.
Well, duh, yeah.
I could have told them that. And I wish they’d stop laughing because it’s no laughing matter to me.
I saw something fascinating last night.
The Biggest loser had a specialist in brain science from Johns Hopkins on last night and he showed some brainscan info that was interesting.
The brain activity of obese people when confronted with food vs the same meal offered to a lean person.
The obese person craves a burger more, by direct image of the brain their pleasure center lights up about three times as much as the thin person…
But…when they actually eat the burger they get less/weaker dopamine activation than the lean subject, again, proof is in the brainscan. Per this doc, that’s one of the reasons they eat more stuff, to bring the dopamine response up.
This was always given as anecdotal evidence but now there is visual evidence to prove it.
I have a lot of problems with the Biggest Loser sometimes, but I think the show did a real service last night.
Being morbidly obese is hard in this society….
Being morbidly obese with disabilities that predated the obesity and are separate from it….is harder.
Let’s say you begin to exersize and your health improves.
You watch salt for blood pressure
You watch sugar to avoid diabetes.
But since you have a long way to go, you’re going to look Fat Enough to Laugh At for a long time.
There’s something besides comic fatshaming or extreme medical intervention…that we can do, and I think, should do.
I have a heavyset friend who weighs in only a bit more than myself…and yet she stays away from social events, from movies, or the parks, or church.
She isolates herself *by choice* and she admits part of the reason is so she won’t have to endure any staring or pointing, laughter, rude comments.
I’m a fat broad and I won’t do that. No one said you had to ‘get out less’ because you were fat.
I don’t know, the most I might do is choose not to eat in public, but even that seems extreme.
[It’s because I’ve had total strangers point at what’s on my plate and ask me if I should be eating that. So I don’t eat desserts in restaurants anymore. But the inquiry by strangers hasn’t stopped. It now goes to quantity. [“….do you really think you should be eating that much?”]
Will people be happy when I bring one of those little trays from the diet dinners to restaurants with me, or will they still get publicly nuts about the four bites in those trays ?
But I won’t isolate myself. It will be infrequent, but when family and friends are around to help me get around I’ll go visiting, I’ll hit the park I’ll go to films, theatre, religious observance.
I think fat folks make it harder on themselves when they hide away.
Being fat is tough enough. Don’t make it worse. Make a conscious decision to connect, to socialize, with friends and family.
You’ve got to feed your soul. You’ve got to feed your mind, your emotional life. Your creativity.
It makes me sad to be disappointed in one of the movers and shakers at the institution that saved my life, the Cleveland Clinic Foundation….
Evidently the head of the Cleveland Clinic would like to drive fat people into unemployment.
Regina Brett of the Cleveland Plain Dealer wrote a column seconding the head of the Cleveland Clinic when he said if possible he would not hire any obese person. She ran into a sh!t storm of well deserved criticism as did he. If you don’t want to understand the physiology of fat development because it might interfere with your pet theories O.K. But there are a lot of other reasons that people put on weight that have nothing to do with the “Normal” calories in/calories out in traditional nutritionist dictum. Whether its the amazing weight gain caused by some antipsychotic drugs even when administered on locked psyc units with standard food intake or the difference in conversion of carbohydrates to fat between skinny and fat women. You have identified some of the reasons that obesity is epidemic and that goes double for poverty areas with little access to fresh fruits and greens particularly at affordable prices. Please understand that by reducing the problem to a simple binary problem you do grave injustice to the people dealing with this and encourage and justify the haters.
I see it more as an employment discrimination issue. People always hate on fat people, that’s a given…but we shouldn’t work at CCF or other hospitals because we’re fat?Lack of a paycheck kinda puts a crimp in making healthy food choices doesn’t it?