Living with Lymphedema & Lipedema Part II
How I Learned to Love Being a Compliant Patient – by Jennifer
I was diagnosed with head and neck lymphedema, as well as lipedema, in the fall of 2012. The first condition means my head, neck, face, shoulders, and upper back swell with fluid instead of processing it. The second condition has to do with vascular and lymphatic leakage into the fat cells in the lower half of my body, which causes buildup and swelling. Both conditions result in swelling and are painful. So, after almost 40 years of never considering my lymphatic system or its function, it became the most important thing in my life.
Within weeks of my lipedema diagnosis—which was made subsequent to having started a series of manual lymphatic drainage sessions for my head and neck—I took the advice of my therapist, Deana, and started a home maintenance program. This meant that I was committing to doing something called skin flushing, or self-manual lymphatic drainage (S-MLD), every night, in addition to wearing compression stockings on my legs during the day. This turned out to be just the beginning. I soon learned to wrap my legs with short-stretch bandages; I bought a rebounder (mini-trampoline), so I could start exercising effectively and safely; and I adhered to an anti-inflammatory diet. Eventually, I took up yoga and invested in pneumatic compression pumps—but I am getting ahead of myself.
At first, it was just S-MLD and wearing compression. Just these two things immediately made a world of difference. Wearing compression stockings reduced my pain and fatigue enough so that if I didn’t wear them, I regretted it. Now, I go bare-legged maybe three or four times a year, on the hottest days of summer, as a sort of treat.
It was the skin flushing that truly created a phenomenon in my body. It seems almost absurd that something so simple—something you can do for free in your own house—could ever make a difference, but it did. The process can feel arduous, but on the very first night I tried it, I got about halfway through the regimen when it was clear something was…moving…in my legs. There was a gentle sense of relief that I came to crave.
Next came bandaging, which was a financial investment as it costs at least $100 for a set of bandages. Nothing about any of this is inexpensive except for the S-MLD and the basic motivation to keep going—and even that is a lot easier when you have the support of professionals. If you are diagnosed with lymphedema or lipedema, one thing to try to adjust to right away is that these conditions are chronic and progressive. If you don’t manage them, you only get worse. And the longer you wait, the harder it will be to get things under control.
So, I bandage—which entails sleeping with my legs wrapped. Sometimes this is hot and annoying but often it feels like my legs are being hugged and taken care of. I tend to wrap intermittently, sometimes several times a week for months, but I can weeks go without doing it at all. I’m not going to claim to be perfect in the compression and wrapping arenas. Life got much easier and far less painful when I got my pneumatic compression pumps. Insurance covered part of their cost, but I had to pay a few thousand dollars out of pocket between my head/neck and legs. The medical supply and insurance companies will work with you on payment plans, and if you’ve fulfilled your deductible for the year, that will further reduce your cost. It’s an investment, but I am almost certain that without my head and neck pumps for lymphedema, I would not be able to work full time due to pain.
I will never pretend that living with lymphedema and lipdema is easy. For me, the best way to deal with it in a constructive way is to attack it with tough love in the form of lots of appropriate exercise—and trying to remember to breathe. For some people, the idea of addressing their health every day is overwhelming. It is definitely time-consuming. But the alternative is continuing to swell. In my case, my edema had turned fibrotic. I was shot through with fascia and many of my muscles were frozen. Every body is different, and this doesn’t happen to everyone with these conditions to the degree that it did to me, but I wasn’t just turning into petrified wood—I was already there. I was practically stone. I needed to change what was happening to me.