I depended on my left leg to allow myself to feel like I was somewhat normal, that I wasn’t all bad. It was my safety net; I would often tuck my swollen, shameful right leg behind my normal, regular-sized one so people wouldn’t notice it while I was sitting or standing. Whenever I would get upset about my lymphedema, I used to console myself by saying, “It could be so much worse – I’m lucky it’s not both legs.” Then I would look down at my ankles and whisper a silent thank-you to the powers that be that at least one of my limbs was an ordinary size.
Now, however, I’m finding that I can no longer count on my left leg to give me any sort of semblance of comfort. The lymphedema has begun to spread, and now my once-normal leg has become just as bad, swelling and puffing to the point where it forms rolls of retained fluid, and it hurts to bend my ankle. I feel betrayed and ashamed by the swelling of my left leg, and I feel ugly. Most of all, though, I feel angry. Is this some sort of beginning of an end? Is this my body throwing up a white flag in surrender to this disease? What’s going to happen next?
What do you think, lymphies? What do you do when you find yourself getting caught up in the negatives of your lymphedema? Feel free to share in the comments section below.
I’m angry, too–not just at one leg, but at both…that’s why I slave over them. Do you have a lymphedema doctor? How about a therapist? Your legs (and mine) won’t get better all by themselves, but with CDT, as obnoxious and time-consuming as it is, you can get them under control. Standing for any length of time, the way you talked about doing on the job, is bad…you’re seeing that now. By the way, I’ve had some people say that I have a negative attitude when they read frustrating and angry words from me, and some folks will probably say that to you, but I don’t call it negative, I call it combative, which is a good thing–you can accept the presence of the disease but not the idea that you shouldn’t fight its effects on you! Make sure you get help–wraps, garments, MLD, whatever else you need.
Lymphedema sucks, Alexa. Plain and simple, and I think I’ve said that before. Barbara is right – you have to take charge of this and manage it yourself. We are our own best treatment.
Lymphedema sucks. I cried, too, two years ago when my lymphedema therapist (hey, she’s moving to Portland, Maine – much closer to you than me) said that the minor swelling around my “good” ankle was in fact lymphedema in my good leg. I felt just the same as you: I was pissed. I felt betrayed. I felt my life as I knew it was over. I’d always had a “good” leg to weigh against the lymphedema leg. And then I saw it begin to swell and at times get pretty big (like after a bug bite).
So what do I do? Yes, cry. Get angry. Beat your fists against the world. Declare how much it sucks, because it does. Then do something. As Barbara says, make sure you get help and you can keep it under control.
Do you have a lymphedema therapist? If not, go find one. If you need to find a therapist, you know the National Lymphedema Network is a good place to start. I think the Norton Clinic is near you? She/he should teach you MLD. Totally. Absolutely. You must learn how to do that. If you had been shown and now need a refresher, go get it. You need to learn how to wrap your own legs. The therapist can show you how.
And get fitted and wear your garments. If you’re lucky and you get ahead of this swelling early, you can hopefully get by with over-the-counter thigh high garments. These are often “circular knit” garments made to fit a range of leg sizes. They are MUCH cheaper than the custom one I have to wear on my old left leg.
As for my new lymphedema leg, it likes the thigh high circular knit garment from time to time (more and more, though) to keep the swelling down. And if I keep it controlled well enough I can generally do a bike ride with just one leg in a garment, not two.
I’m sorry to sound preachy, Alexa. I’m just trying to help. I hope you can get your groove back real soon, girl. Because you do help others who read your blog. How amazingly open and honest of you to share how you feel without hesitation. You are a gift. And you are having a difficult time, I know. I wish there were something more I could say; something to make it all go away; but of course we can’t.
All I can assure you is this: as you learn to manage this lymphedema and free up your life, it gives you the heart and the spirit to tackle other challenges in life that, well, just don’t seem that big anymore.
Carry on. Take CARE of yourself.
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Hey Alexa, just thought i’d drop by again to say how much of an inspiration you are to me.
I’m 20 years old and will be suffering from left leg lymphedema (which is the inverse from yours) since I was 8 (it’ll be 13 years in august) I of course never took it too seriously and take each day as it comes.
After finding out what I have is called and I began reading your blog I’m glad to know I am not alone and have others that know what I’m dealing with.
I am really sorry to hear about your left leg getting the edema as well and I hope that you remember that no matter what we are behind you 100,000,00% and lots more.
Keep being an inspiration to many like me whom are simply idiots for not trying to take care of themselves, my mother and I commend you (I told her a little bit about you, she seems glad I have met a person like me and wants me to contact you so we can be friends)
I love the advice you have to give us each time you write a blog entry and I always take them to heart now. I’ve even gone to my doctor to get fitted for new stockings and shoes.
Alexa, you are an AMAZING person and NEVER forget it.
I hope we can become great friends
You’re so kind to leave such a beautiful comment – thank you :) I cannot express how happy I am that you found the blog and are able to relate. It’s people like you that I write for, and reading your feedback makes me feel like it’s all worthwhile. So thank you, Mimi, for your sweet words! They are so encouraging and I really appreciate it.
I’m thrilled that you went to your doctor to get fitted!! I know it’s so annoying to deal with, but ignoring it isn’t going to make it go away. Unfortunately, that’s just the way it is. Instead, you have to make time in your life to take care of yourself, edema and all. BUT– don’t forget to have fun, too! You shouldn’t let your lymphedema get in the way of doing the things you love!
If you’d like to begin a correspondence together, you can click on “Contact Me” at the top of the page. You can send me a message there, and it will go directly to my email!
Thanks again, Mimi, and I hope you’re doing well!
Thinking of you,
Alexa, It’s true. Having lymphedema doesn’t mean it’s the end of the world. There’s a lot of things you can do, as long as you protect yourself and keep from getting injured you can still lead a normal life.
Personally I think it’s the outlook you have on life that will get you through it all.
I’ll look into the “contact me” info when I get into a regular computer. I’m in my ipod right now so I’m not sure it shows that.
I definetly want to keep in touch with you because like I have said, you are a true inspiration