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Click to read "I love my Caregivers" by Wanda

What Happened to Your Legs?

By Moonsoul

I don’t really know how to start. Forever I have been talking to people who just give an odd look when I answer the question of, "Oh dear what did you do to your legs?" I was feeling pretty lost and discouraged, until I found this site. Reading the stories made me cry. Not because I was sad but because I was not alone.

I am 37 years old now. When I was 28 I noticed my ankles were getting fat. Big fat ankles like my grandmother and all the women in her family. I have always been big. But I was always active. I had lots of problems in my early 30's and so the size of my legs was not a big concern. When my legs started getting bigger I quit wearing shorts, then skirts and finally short pants.

I was so embarrassed by my "monster" legs. I lost 87 pounds with weight watchers and was taking 5 water aerobics classes a week. And my legs kept getting bigger and bigger. My doctor put me on water pills and keep increasing the dosage. When I mentioned that they didn’t work she just increased the dosage again. Two years ago I gashed my leg on the corner of the car door. I went to the doctor because it was leaking. It freaked me out! It took nearly a week for it to stop draining. I could put the tip of my finger in the cut but it didn’t bleed. Just water. When I asked about this she just shrugged and put me on an additional water pill.

I switched doctors in May of last year and he walked in the door looked at me and said, “First we will have to treat your Lymphedema.” I had no idea what he was talking about. I started the therapy in June with horrible results. The place had just started lymphedema therapy. I was the worst case they had seen and I felt really intimidated! Not because they were mean, but since birth I had been taught not to be difficult or to question those in authority. Therefore when I asked questions and I got answers that I didn’t understand, I didn’t challenge the answers or ask for clarification. I went thru the whole program worried that something was wrong but afraid to question the therapist. As a result, I used up all my insurance and in the end had three different garments that did not fit.

I paid out of pocket to go to another therapy center where I was informed that most of what I was told was wrong and we were doing many things wrong. So I had to wait until this year to try therapy again. I have learned so much but I still have so many questions. I am grateful for this site and for all of the people who post on it. You have been teachers and have given me comfort. I appreciate it. I am still just getting wrapped to the knee. We have been unable to find a way to wrap my thighs. I have stage two in my right leg and stage 3 in my left; however, I am getting better.

I have some advice to pass on:  (1) If it sounds wrong most likely it is. (2) Never be afraid to ask questions or disagree with your doctor or therapist. (3) If you get a funny feeling about what is going on, ask someone else. (4) You can help yourself by being an informed consumer. It has cost me thousands of dollars and lots of precious time to learn these lessons. I hope to find some answers here. I wish each of you comfort and inner peace with your lymphedema.

Got a question or comment? Post in the 'Living With Lymphedema' forum. Share your stories in My Stories.
Category: Living well with Lymphedema


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