Teresa’s Story

I have always been over weight my whole life and pear shaped. My legs where always large so I never really noticed that they were swollen not just fat. In January 2013 I went to the ER with a sore on the back of my leg that would never heal and always soaked my bandages. My legs were hurting so much I could barely put any weight on them. I was diagnosed with cellutis and lower extremity lymphedema. My left leg is more effected than my right but both were swollen. I was hospitalized for about a week. The doctor told me that there was no cure for lymphedema and gave me papers on what signs to look out for with cellutis. The doctor had my legs wrapped in ace bandage and sent me home. I had no insurance at the time. Since then my legs continue to swell and I am very limited on any movement with them. I have a walker and a wheelchair. I try to use my walker as much as I can so I am not completely chair or bed bound. I did get state health insurance but it was on and off again for coverage. The other treatment I was ever offered for my lymphedema was compression stockings. The nurse got the them on for me but at home I couldn’t get them on and off. Before the lymphedema I was able to work full time. Now, I am at the point to where I can’t even drive or walk farther than 20 ft with my walker. My kids have been real sweet about all of this. They handle most of the house, laundry and shopping. My youngest is turning 18 so they are not little kids but they give up a lot of fun time and going out with their friends in order to make sure I am never alone and everything else is in order. That is no life for kids/young adults. I can’t even take a normal bath or shower. I have to use sponge baths. All of this feels very degrading. I am currently trying to push my primary doctor into referring me to a rehab clinic that I found. They can do decompression therapy that just may help. I am praying that my insurance will pay for it. If I can reduce the size of my legs maybe the pain will decrease and hopefully I can put more weight on them. As my life currently is I can’t work and state insurance doesn’t pay for much of anything. The doctors that accept my insurance don’t seem to know anything about lymphedema and it is sad that I have to bring in papers explaining the treatment that I need. It degrades the doctor and in turn changes the way his treats me. I am just trying to get help and hopefully a normal life back! On a foot note. I can’t work and I am trying to get Social Security Disability. For what all I have read and researched, primary and secondary lymphedema are treated the same and cause the same problems. So why does primary lymphedema get on the compassionate allowance list but secondary lymphedema does not. Personally, I feel emotionally kick to the curb by my doctors, insurance and the government! Thank you for listening to my story. God bless