I was officially diagnosed with Lymphedema in both legs just a month ago, although I’ve had edema with swollen feet and legs for two years, along with a radiation ulcer. I first heard about Lymphedema that first year of treatment by a visiting nurse. One, who was also a wound specialist, told me I had Lymphedema, but nothing happened after that. The physical therapist pushed me to wear compression wraps which I hated wearing. I went on a low salt diet, as well as a vegetarian diet. The latter l lasted just six months; the low salt diet lasted a year and didn’t make any difference at all. Neither did water pills like Lasix. The medication just made me pee a lot, but the swelling didn’t budge.

Finally, the new wound specialist sent me to an occupational therapist who specializes in Lymphedema. She explained what my problem was and how it could be treated. I finally found someone who knew what was going and could tell me in detail. I learned that most doctors are not familiar with Lymphedema, which I find ludicrous, considering how many people suffer from this painful disorder. So many people have a hard time finding a specialist trained in providing treatment. There is no cure for Lymphedema, just constant treatment. Many things can cause Lymphedema, but for me, it was three… damage to my leg in the 1987 car accident, Rheumatoid Arthritis that I’ve had since I was 22, and the ulcer on my leg caused by radiation treatment for Lymphoma cancer tumors. I didn’t have a chance. This ulcer wasn’t healing, and I saw at least a dozen different specialists for it and a variety of treatments. Nothing worked.

So I was lucky to find that we have not just one specialist but three in this small town.

She told me that I would come in daily for manual lymphatic drainage (MLD) and wrapping of compression bandages from hip to toe. That would be a problem since I’m housebound, and getting out to go anywhere daily is very difficult for me to do. She asked me if I was willing to be treated by a visiting nurse and therapist, and I jumped at the chance.

Now I have a medical nurse who checks and treats the ulcer on the back of my leg and a therapist who does the MLD and measures my feet and legs to see if we are making progress. She also helped me put on the Juzo compression wraps, which I am now getting used to wearing. In addition to these processes, I also elevate my feet while relaxing in my zero gravity recliner. At the same time, I watch TV and then use air compression boots, much like this Lympha Press compression boots. Mine are like an inexpensive version of the Lympha Press, costing about $125. The Lympha Press can cost up to $5,000. There are cheaper versions too, but with these products, you get what you pay for. The Lympha Press is fit for your body, and it covers the whole area. My air compression boots only cover the foot, ankle, and the area just below the knee. They aren’t the best, but they are better than nothing. Click the link to learn more about these pumps and Lymphedema.

And since most doctors don’t even know enough about Lymphedema to diagnose it, most insurance companies don’t cover the costs.

But I finally can see progress with the four treatments that I use every day. I even sleep in my recliner with my feet elevated up higher than my head. It was weird at first, but now I’m used to it. When I wake up, the swelling is gone, and my feet are all wrinkled like what you see with your fingers when you spend too much time in the water. I’ve lost 5cm on one foot. I put on my Juzo wraps before I lower my legs, which helps keep the swelling down, although, with gravity, my legs and feet still swell up whenever I’m upright. I tried to spend several times doing a self-MLD massage while I elevate my feet.

Two wonderful by-products of this treatment are that the wound no longer “weeps.” I would also get weeping through breaks on my leg. That has stopped too. I was led to believe this was water retention, but it’s lymph fluid, which is supposed to circulate down and back up the legs and empty to the bladder. The treatments do make me have to pee more, but this time it’s making a difference. And, most importantly, the ulcer is finally starting to heal.

My therapist does a more detailed MLD massage, starting at my neck, down to my belly, and then my thighs, calves, lower legs, and feet. She then massages my legs with lotion and then puts on my soft liner, and then the Juzo wraps. The massaging is so relaxing, I almost fall asleep. She comes twice a week to do this, and in the meantime, I do the things I can do at home.

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