The Skinny on Lymphedema
With Minnesota hitting a weird week of high-humid, hot weather, I am reminded of how bad my lymphedema can get during our hot and humid summers. Prompting this entry about my life with lymphedema.
Recently someone e-mailed me criticism about how poorly I’m taking care of my body and my lymphedema. Telling me that I’m not following the rules – not wearing a compression garment on the plane to New York. Not wearing my compression glove and sleeve at all.
This made me crazy mad. So crazy mad that I ended up getting ridiculous, temporarily expressing rage in my blog. Severing our internet friendship forever. I guess. I apologized for my temporary insanity but she apparently wants none of it.
My long-time friend Patty once said to me, “Just because they’re good intentions, doesn’t make them good.”
But here’s the thing that pushed my button and drove me over the edge: She may have gone through breast cancer but she does not have lymphedema. And someone who hasn’t suffered through lymphedema has no business criticizing anyone for how they treat lymphedema unless they are a medical person who treats lymphedema. I don’t care how kind of a place they’re coming from. It’s never okay.
I know of two people in my real world who have or have had lymphedema (which never goes away so hang on to find out where the “had” comes from):
My college pal, Jan, had surgery where she lost a lot of lymphnodes in her groin area. She has lymphedema in one of her legs. She wears a compression garment while she works. Not because it’s going to make the lymphedema go away but because the pressure one feels when the swelling goes up is very uncomfortable, sometimes painful. Jan and I have talked about our lymphedema and she, a nurse, has sympathized that my lymphedema is possibly worse because it is much more in your face and difficult to live with than a leg.
My college pal, Fahimehgoonerbabybatchnaimabadimortensen aka by Lena as a Suspect Terrorist, got lymphedema with her breast cancer. Unfortunately for everyone but Lena, Fahimeh died before I even knew she had breast cancer (we’d been out of touch for awhile) so I wasn’t able to commiserate with her. We could have thrown the advice and criticism all over the place without offending each other.
I’ve had some interesting questions/suggestions thrown my way by people who are neither suffering from lymphedema or medical professionals:
You should cut down on your salt intake
Fact: Lymphedema is a build-up of protein-rich lymphatic fluid, not water retention.
However, when I get hot and sweaty, my entire body puffs up some, causing my lymphedema’d arm to seem more swollen. And as long as I’m on tamoxifen (3 more years) I’ll continue to have heat-inducing hot flashes. Which is fine during a Minnesota winter but a totally different adventure on a hot, humid Minnesota summer day.
Lesson: lymphnodes aid the immune system by moving this lymphatic fluid in and out of appendages and such. When some of your lymphnodes are removed (in my case 25 – which was over half of my lymphnodes in my right armpit) this causes a back-up of lymphatic fluid as it attempts to move back out of the arm – causing a swelling. Water has nothing to do with lymphatic fluid.
You should do what your lymphedema specialist says and wear compression garments all the time
My lymphedema specialist suggests I wear the compression glove and sleeve throughout the day, every day. And that I should wear a compression “mitt” at night, or “wrap.”
Fuck me, “wrap.” I wrapped myself into tears of misery for two weeks once I first got the diagnosis of lymphedema. This entails wrapping each and every finger and my entire hand and arm in gauze. Followed by layers of cotton cushioning. Followed by at least three elastic Ace bandages. There was also a large layer of foam that had to be inner-wrapped over my knuckles. And it all had to be just right. The right tightness without being too tight. You don’t know how many times I cried while sitting in my bed wrapping and then unwrapping, rolling everything back up and wrapping all over again to get the tight but not too tight tension in the wrappings.
I wore the compression glove and sleeve for longer than that every day. And tried to live a “normal” life. This, of course, is on my right hand. And I am right-handed. I want you to imagine your life, wearing a glove on your dominant hand throughout one day. Go on. Try it. Wash your face and brush your teeth without getting your glove wet. God forbid you should poop! Go to work – in a health care job, foaming in and foaming out of every room. Put some lotion on your glove-free hand. Write with a glove that is compressing your hand and fingers. Try typing with it.
Someone told me that they wore a compression sleeve so they wouldn’t get lymphedema. And that impairs you how? It does not compare. Not at all.
Fact: Compression garments do not make lymphedema go away. They just keep the swelling at bay. Lymphedema poetry. Awesome.
Lesson: As long as you wear the compression garments or wrap the swelling doesn’t usually get worse. Once they’re removed, the swelling is back. I understand that I need to wear it when I walk – and I do this because I really don’t want my arm to swell up too much.
You should go in for light-touch massage every week, several times a week (this one is from the specialists, not a layperson but it’s been brought up in )
Yeah. That works so well into my schedule and insurance coverage. Not. The schedule I can figure out if I really want to. The insurance coverage is a whole other problem. And here’s the thing – I went in for weeks and week and weeks of light-touch massage and from what I can see, there’s not much to see. I’m sure that there’s a movement of fluid that isn’t happening without the massage but how much, no one knows. I recall my physical therapist, Cathe, warning me of signs of stagnate lymphatic fluid – a “woody” feeling to a finger. She never saw anything like that in my hand so it seems to me that that’s a whole lot of aggravation and expense without necessity. If I start to turn into a tree branch, I’ll go in for massage. And wrap. And compression garment-wear.
You should exercise
And you shouldn’t? Everyone needs to exercise. There are light weight-bearing exercises specifically targeting lymphedema. These show that swelling will be less swellful (is too a word!) However, if you go too far, you can cause more swelling. No one knows exactly what that level of far-ness is. However, I should be exercising. I should be lifting weights with my arm. And I don’t because I am too lazy to do it. I’ve got everything I need to lift weights but apparently I’ve got more excuses than equipment.
You should lose weight
No one has said this to me but me, a few have dangerously implied. I should lose weight. Because that would make my arm smaller, in general, causing less pressure with the lymphedema. I’ve been unsuccessfully trying to lose weight for 30 years now, only getting temporary success. I need to change my eating in general, not diet. I’ll let you know if I figure this one. Until then, don’t you ever tell me that I need to lose weight. Even if you are my doctor. We all know that I know what I need to know about too much weight and the cancer it gave me. Thanks.
End of lecture.