So you have this thing … lymphedema woes

By | Mon November 23, 2015

So you have this thing, and you are likely going to have it for the rest of our life, and there isn’t much we can do about it but … wear a compression garment and come back in a year …

Really?

I ended up sending another message to my doctors about lymphedema. They really didn’t tell me a lot. At the time, I wasn’t ready to hear that much. But now, a month has passed. I’m ready for additional information. The problem is, the internet is filled with misinformation. For every thing I read that I should do, I read another article that says I shouldn’t do it.

So I send another bout of questions off to my doctor – starting by asking what websites are good for getting good quality information about lymphedema.

One of the useful links was to this video clip on a presentation about lymphedema. I find that having watched it I have a better understanding of the relationship between the skin and lymphedema. I had thought of the lymph system as this shadow circulatory system, but had not appreciated the link between lymphedema and skin health. If you want to learn more, I recommended watching the video.

And so, like in the video, I’m going to go and put my head back in the sand for a bit. I have too much on my plate right now. I’ll deal with this issue one step at a time …

2 thoughts on “So you have this thing … lymphedema woes

  1. brandie

    I have done OT several times for my lymphedema and it has helped so much! My therapist only does breast cancer patients so not only did she help me, but educate me! She recommended one website in particular to get info, and when I get home I’ll pull it up And share with you
    I’m sorry your doctor’s are being less than helpful about it :(

    Reply
    1. Becky Post author

      I think the issue with the doctors here is that they are so used to it they forget that it is really new to others. They are great doctors. I had a great appointment, given that I only have mild lymphedema. I got the level of information I could handle during the appointment, but I didn’t get enough “homework”. And the condition is so poorly understood that I don’t know which doctors need to be informed. Hearing that doctors only get 15 minutes to 3 hours of education about the lymphatic system throughout 4 years of medical school is not encouraging. It tells me that again, this will be a condition in which I am the expert … other then my ultra-special specialists …

      Reply

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