I became aware that something was wrong in high school when a girlfriend told me that my legs looked like they didn’t belong with my body. At this time, in high school, I weighed a mere 103 pounds. Time passed and at the age of 23, I had my daughter. I didn’t pay much attention to my legs until she was about 8 years old, when I saw a picture of myself in a pair of shorts. I knew my calves were not small, but this picture showed that something was terribly wrong. They looked like they belonged on a person three times my weight. It was at this time that I began asking doctors what was wrong. Each time I was told that I was normal, it’s just the way I’m made and I should be happy that I am healthy. At this time I was about 31 years old. No other women in my family have legs like mine—fat at the ankle, large calves and fat knees.
At the age of 34, I graduated with a B.S. in Microbiology, and in 2000 I came to Colorado, where I took on a new family doctor. He ended up putting me on thyroid pills and my calves reduced by one inch. From that time on, I thought the problem with my calves must be due to my thyroid. My doctor had called my condition “Myxadema” and my weight was increasing due to work stressors of priority.
From 2002 to 2010 I gained four inches in my calves. In addition to my large calves, an excess of fat had accumulated at the knees. I found that I tended to get bruises easily. My calves were very hard. In late 2009, after taking a new contract position, I purchased Kaiser Insurance. I was now 48 years old. I again went to the doctor to see if they could figure it out. My intention was to not walk out unless we did. Many tests were done on me and all came out normal. I was then sent to a circulation specialist in Denver. The diagnosis of Primary Lymphedema was supported by a second doctor in the office, who stated the same diagnoses without having heard the previous doctor’s opinion. This doctor immediately diagnosed it as Primary Lymphedema due to my girlfriend’s comments in high school.
I was then scheduled to do decongestive therapy. I had my legs wrapped 24 hours a day, seven days a week for one full month. I went to see my therapist three days a week where she did a light massage on my legs and rewrapped them. When therapy was done, we found that my calves had reduced in some areas but not others. My ankles were looking better.
After therapy was completed, Kaiser assisted in the purchase a pair of compression stockings. It took a full month to get stockings, and as a result I had to purchase off-the-shelf stockings that did not fit well. I was in shock because one pair of thigh-highs that I could wear to work were about $100. I needed at least three. The custom made ones that Kaiser helped me to obtain cost in the area of $800 for one pair. I knew there was no way I could afford all of this. My doctor wanted me to purchase a compression pump and use it on one leg on alternating nights. I requested assistance from Kaiser to purchase this pump but was told I did not have Durable Medical Equipment on my policy. In all, for all of my therapy appointments, I also spent $500.
Ultimately, I was laid off and had to let go of my Kaiser insurance. Now I can’t afford to purchase any compression garments or a pump to help me to maintain or make up ground. I also can’t afford therapy. If this legislation is passed, perhaps it will help me get my Primary Lymphedema under control.
