Wednesday, November 16, 2005

Here it is, my best Friend finally convinced me to wear a skirt. If you notice I am still hiding the more swollen leg. This is the first time I have worn a skirt in 14 years. I had a ball at a costume party I went too. I haven't gone out to mall just yet to by more skirts. I still need to get over the psychological part first. Just wanted to share. :)

Friday, September 02, 2005

My Story

My name is Shante and I am from NYC. I am 27 years old and I have had lymphedema since I was 11 years old. My mother first noticed that one of my legs was slightly bigger than the other at my 5th Grade graduation. It may have started earlier but this was the first time I was in a dress and the first time we noticed it. She immediately took me to my family doctor. The doctor told us that the swelling was probably due to an insect bite, and if the swelling doesn't go down to come back. Needless to say the swelling never went down. Being that young having this condition was devastating to me. The first year the swelling was hardly noticeable.
The next year was worst for me. At this time I was not yet diagnosed with lymphedema. I was sent to all kinds of specialists. One doctor wanted to stick a big needle in my leg, my mother was too squeamish to watch so she asked my father to take me. That was one test never done. Summer was the hardest for me it still is. At 12 years old looking deformed is not something you can be comfortable with. I wore shorts back then and people would stare, I could understand why kids would stare kids but not the adults, they hurt me most.
My parents insisted that I use the Flotron Machine that my doctor recommended. Any down time was to supposed to be devoted to using the pump. I found out later that it did more damage than good. The pump caused my mid section to swell. My parents also insisted that I wear this custom made stocking which took all three of us to put on and take off everyday. It was the most painful stocking in the world.

Finally at age 14 I was properly diagnosed. A cousin of mine was watching the 10 o’clock news. The Medical Reporter was doing a special on Dr Lerner and the Lymphedema Services here in NYC. When I turned the television on I couldn’t believe my eyes, there was a women whose leg looked like mine. My parents immediately called and scheduled an appointment for me. I was so happy when it was time for my consultation. The day of my consult was bittersweet for my family. The same day I had my consult was the same day we found out that my grandmother did not make it out of surgery. This was one of the worst days of my life. It took about 5 months for the MLD to begin, after going though all the red tape with my insurance company and getting an appointment. The Lerner center was great. I had the best Therapist, her name was Gayle, we had a blast together. We listened to the Aladdin soundtrack while I got my treatment and we sang together it was great. I cried when it was all over. I knew I could not massage or wrap my leg the way they did. I was given all the bandages and supplies I needed and a Juzo stocking and I was sent on my way. That was the last time I had treatment.
I have been wearing the Juzo stocking now since I had the treatment. I elevate sometimes at night. After my treatment I was back to being a little bit depressed. I had higher expectations and I didn’t realize that I needed to keep getting treatment in order to get better results Unfortunately we could not afford it and it was hard enough to get the insurance company to pay for the initial treatments. Since Lymphedema was still really unknown the insurance company didn’t see the point. With the stockings on, my leg still was swollen, it wasn’t any bigger thank God.
The next year my other leg began to swell. I was not wearing a stocking on this leg and I guess due to the summer heat now both my legs were swollen.
Lymphedema really has not gotten the best of me I have just learned to live with it and move on. My life is not bad either. I have a supportive man in my life. We have two beautiful children. We have 4 year old twins, a boy and a girl. When it comes to my Lymphedema he is very supportive we have been together for 10 years now. In my early teens I thought I would never find someone who could look past a swollen leg and see the beautiful person that I am. That was far from the truth. Many people are not that superficial.
For all those newly diagnosed, Lymphedema is not a death sentence. To all the young people with Lymphedema like me keep your head up.