Monday, October 28, 2013

Living With Lymphedema

The best way I can think of to talk about my experience with lymphedema is to tell you about my morning.

It's time to shower. Before I can, I pull out my PitPak, which I keep in my right armpit at night to keep the swelling down. Then I take off my Under Armour compression shirt, which I wear to keep mild compression on my chest and torso and reduce the amount of pain I have without compression, so I can sleep. It also helps keep my PitPak in place.

After my shower, I make sure I'm good and dry so my compression garments don't trap any moisture. Then I grit my teeth and put on deodorant (I get electric shocks down my right arm when things rub down my pit like that, though it's better than it used to be and I've learned to apply it with much less pressure). After that I don my Juzo Armsleeve, using "It Stays", a roll-on adhesive, to keep the top from rolling down and needing to be messed with all day. (An aside: I wear a plain beige sleeve. I've been asked why, when I have blue hair and love color, and there are so many really awesome designs available. It's because I don't want to be noticed for my sleeve and have to answer questions about it. The beige one is almost never noticed or commented on, and besides, I'd rather be noticed for my cool hair or my knitwear than my sleeve!) If my hand is swollen, I have a gauntlet that I can wear. I only need it sometimes, thankfully.

Next I put on regular underpants and pull on my custom garments. The closest description I can give is bike shorts and a tank top, but that's not quite right. The shorts have silicone bands on the leg openings to keep them in place, and only come up to about the top of my butt crack (sorry). The top comes down further than the top of the shorts and they Velcro together. In combination, they keep down the swelling in my left lower abdomen - a result of the lymph nodes moved during my reconstruction, as well as the area below the bra line, and my upper chest. Without compression I'm in some degree of near-constant pain, lymphatic fluid builds up, and I swell and am generally miserable.

Here's a pic of them, freshly washed so they are at their tightest (thus providing the best compression):

Note: my "foobs" are not that small - that area is pretty elastic! But since I have lymphedema in my entire chest, the compression has to be pretty specific without causing the "uniboob" look under clothes.

Putting on my garments is a hassle. They are (for hopefully obvious reasons) very tight, so I have to wrestle with them. The Velcro likes to bunch up, and when I put on jeans I have to really fight to keep it lying flat so it doesn't show. Also, the top comes up rather high, so in order to wear v-neck or button-up shirts I have to either wear a shawl (thankfully I'm a knitter and the weather is cooling down, but in the heat of Florida summers, the garments are ENOUGH on their own) or a bandeau top to hide it.

Once I'm dressed, I can pretty much forget about my garments until I have to go to the bathroom. Then I get to wrestle all over again as I position the shorts and top properly and get the Velcro to lie as flat as I can under my clothes. It's a hassle, but I consider it better than the alternative (not wearing them), especially since I can't wear a regular bra anymore - I have a long-line mastectomy bra, but it's not comfortable and doesn't stay put, nor does it provide compression.

Other times I can't forget about my garments include when I shift wrong and the underarm fabric pulls uncomfortably, my sleeve shifts down ("It Stays" has finally eliminated that issue), my hand is swollen and I need the gauntlet, which can restrict some movements, or my clothes don't look right. I realize this may seem trivial, but those of us who've had cancer just want some normalcy, which can be really hard to achieve. The custom shorts don't come up very high, so there is an area of overlap where there's a lot of compression at the top of the shorts, which means that I have a "pooch" just above that where clothes can look odd. I try to find flattering clothing, but since I'm still struggling to accept my body and now the garments I have to wear, that can be really difficult. The garments are thick and add a layer of fabric that is not only warm, but also ungainly.

I'll do another post soon about lymphedema itself, the risks and potential complications. I thought I'd start here - with everyday living.

Keep in mind after reading all this that I have mild lymphedema that's manageable with a combination of MLD (see previous posts) and compression. Not everyone is lucky enough to catch it as early, or to be able to have treatment and get proper garments.


Beth said...

I just spoke to someone about what a day at my dialysis clinic is like; I'd give anything to not be dependent on that place for my health and my life, but wishing won't change things. Diseases are easily treated or cured, but the survivors know that's not the end of the story. Nothing else to say but that you are one strong lady and an inspiration to me to keep on fighting. ((Hugs))

DeeDee said...

So much love to you my friend. You are an inspiration to me.



Leedra said...

I am just beginning to have a little lymphedema in my arm. I wasn't even sure I was right about it, but saw my surgeon and without me mentioning it he said my arm has some swelling. I will be looking around and reading more about all of this. Just clicked on you from Knitters with Breast Cancer and got here.

Berna's Biker's Blog said...

Keep the effort going .You are doing good to yourself. What make is your chest compression garments?

Melissa said...

Berna, I believe they were made by either Juzo or Jobst, but I can find out if you need. They're all custom-made.

Fortunately, I don't need to wear them anymore - just the arm (which is Juzo ready-made). I still have a bit of swelling, but it goes down overnight and isn't terribly painful.