In which doctors twist themselves into pretzels

September 8, 2015 at 10:34 AM (Lymphedema) (, )

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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