Don't know another person with lymphedema

[debid52]

It is a wonderful relief to find this site where I can hear what others with lympedema have to say and where I can express myself to others who understand. I don't know another person who has lympedema. I was diagnosed 18 years ago with lymphedema in my left leg two years after a radical hysterectomy for cancer. It was transient in the beginning often with long periods where there was no swelling. Through the years it has progressed and I am swollen daily. I have had MLD twice where I went to therapy for several weeks and was bandaged. I have a pump which I must admit I don't use as often as I should and I wear a compression garment daily. Last week I got my first ever lymphedema related cellulitis and ended up in the hospital. It progressed so quickly and I was really sick. I have been home a week and with directions to rest, keep my leg elevated and take antibiotics. There was some vascular damage which the infectious disease doctor said might be temporary but I am scheduled to see a vascular doctor next week to check that out. I have also had breast cancer and had 15 nodes removed, chemo and radiation but praise the Lord I have not shown any sign of arm lymphedema. I am a very small person except for my usually enormous left leg. I no longer wear dresses, not even long ones because even then my swollen ankle shows. I don't want to sound petty or vain because I know many lymphedema patients suffer far worse than I do, but sometimes I am so sad that I need to cover my leg and I can't wear pretty shoes anymore. I know life is far more important than what I wear or how I look, but those things do make me sad. I am retired after 30 years of teaching school and now I own a gift shop with my daughter. Being on my feet in the shop all day is NOT good for my lymphedema. My condition has worsened since we opened but we have a little over 2 years left on our lease so I will have to continue. Then I hope to retire again and have more time for maintaining good leg health through swimming and better exercise.

[joanne johnson]

Hello
I am glad that you found this site as it is very helpful. I have had lymphedema in both legs for about 30 years, I only met someone a few years ago that has lymph in her arms. it was nice to be able to talk to someone else who understands and shares the same problem. You are far from alone having this problem.

I also miss having feminine attractive shoes and clothes. I always wear pants which I have to have specially made. When I have to dress a little more formal I wear long dresses. It is difficult to be sure but I can accept these situations after so many years.

I hope you will feel comfortable communicating with other people with lymphedema. You have been through alot so feel good about yourself and try to have a positive attitude.

Welcome... Remember we are here for you.

Joanne