Andrea’s Story

At the age of 22 I woke up one morning with a swollen left leg. The first reaction was that I was bitten by a spider but after close inspection there were no markings, nothing that would prove my theory correct. I went to every type of doctor known to man; including the gynecologist. I was told that I may possibly have cancer, I was told that it would go away, I was also told that I may have a blood clot. After months of diagnoses and no solutions I walked into a vascular surgeons office he took one look and told me I had lymphedema. My lymphedema is random, it is not caused by any form of cancer and none else in my family physically suffers from it. However they are all burdened with the emotional toll that it takes on me. It is hard for them to relate because I am literally the only person that they know with this condition. There are times where I can not participate with family activities because of my leg. I can not go to the beach and wear a bathing suit because of the ridicule I receive about my leg. Many times when I go to a physician I feel like I know more about the condition than they do. At one point I was prescribed a diuretic to help with the fluid build up. Lymphedema has nothing to do with fluid however I followed the doctors advice and ended up in extreme pain. My insurance does not understand the condition and all the problems that occur because of it. I deal with cellulitis at least once a year. When it happens I can not function, I become weak and I am physically in pain which means I am out of work for at least three days. Speaking of work, casual Fridays normally mean jeans however I do not have jeans that fit over my leg so there is never a casual Friday at work for me. Being a 32 year old professional it is hard to find clothes that fit over my leg. I would love to wear a pair of skinny jeans but the chances of that ever happening are very low. Even a pair of comfortable yet fashionable leggings are out of the question. I feel as though lymphedema has placed limitations on my life that I never expected it to do. There are times when I do attempt to put on that one pair of jeans that fit over my leg and I just cry. In terms of physical therapy, it takes WEEKS to complete which is an issue with my job. Not only that, but when I do have therapy I have to wear leg coverings that literally make me look like the Michelin man and I can not get anything to fit over it that is work appropriate. I feel like every time I try to get a new garment it’s a fight. I can never get a clear answer from my insurance company prior to signing up for a plan in reference to durable medical equipment. All I want is a pump that I can use at home every night but my insurance will not cover it. This has been a ten year fight and I am hoping with more advocacy we can make a difference.