New To This Board
Hello,
I'm glad there is finally a message board for this condition on here. I got sick back in 1996. I had to stay in bed. A few nights later I went to bed as usual. When I woke up a few mornings later and I was swollen up all over my body and I hurt. I couldn't hardly walk, but I managed to get myself into my doctors office (this is a doctor who told me not to diet and just eat whatever I wanted - my mom didn't believe me, so I took her with me once and my doctor told her the same thing). I was told to cut back on my salt intake and sent home. I found this odd since I don't salt my food and I don't eat prepared foods. As I started swelling more and feeling worse, I went to a different doctor. He said I had heart failure and had swollen up with water from it. He put me in a nursing home. I would lose a lot of weight real fast and then gain it back just as fast. I kept telling them something was wrong, but they kept telling me I was cheating on my diet they had me on when I wasn't. After a little over seven months of that, I got sick of being accused of cheating and I left. They said I had to stay, but I left any way. I didn't feel that they were doing anything to help me.
About seven months ago I came across Amy's website and started reading it. The ironic thing is that less then a week after I got out of the nursing home I saw a news report on tv about people that had Lymphedema and had to have their limbs wrapped. I wondered then if I had it, but told myself no and forgot all about it. After seeing Amy's pictures on her website and reading what she said about it, I knew I couldn't keep denying it. I contacted my doctor that is nice enough to come see me here in my home since I can't walk. I told him about Lymphedema. He went and did some research. He took several pictures of me and took them to the only Lymphedema expert in this area.
I was diagnosed with Lymphedema and I'm finally getting the treatments. I haven't been weighed yet, but I know the treatments are working. My shirts are even fitting real lose on me.
I'm still waiting to have my gastric bypass. I was put on a list and told I'd be having it this year. My doctor contacted UCSF the other day and they now say it won't be until sometime in 2006, so I have a long wait ahead of me.
Has anyone else on here had difficulties with walking? If so, does it ever get any easier? Sometimes I feel like I'm never going to be able to walk again. I have had a hard time accepting the fact that I have Lymphedema. When I was first diagnosed with it, I told my boyfriend thinking that he'd end the relationship right then and there. Instead he said, "we're going to make it through this." (I hope he's right). He's been real supportive throughout all of this.
Tarra
I am not sure if you even have the same e mail account or not since this post is older but.............. I to have lymphedema in my left leg the swelling is below the knee and I too have had many problems with it being very painful so much in fact I have problems putting weight on it at all. I do better in the mornings right after waking up than later in the day. As the swelling gets worse the pain goes up as well, so I try to limit myself so not to be in pain. I normally Due manual lymph drainage mornign and night , during the day I have a support stocking that I wear and at night I have to wrap it as to keep the swelling done. Which has helped a lot but the problem is still there. I write this to you cause I ahve found this board and would hope get some use out of it.
Robert
Hi Amy and everyone else on here. I am sorry that it has taken me so long to reply back. I was with the internet for awhile. I haven't had my surgery yet, but I am doing good and wondering if I should go through with the surgery or not now. I had gotten down to 580 pounds, but then I went back up to 610 after I stopped getting the wraps (my mom was doing them, but she isn't doing too good and she had to stop). I got some help though, and althrough I am not getting the wraps, I am losiing and it is staying off. I mentioned to a woman that I have Lymphedema and she proceded to tell me about something I had never heard of before that would help my Lymphedema and help me to lose weight and keep it off. She told me she was instructor for Nia and she has her black belt in it. The Nia Technique is a combination of Martial arts, Dance, and Yoga. She told me that one of the benefits of doing Nia is that it helped the lymph nodes to drain properly. I admit I was skeptical, but I decided that since it was exercise, it wouldn't hurt to try it, so I did. Whithin only the first week my legs were only half the size they were and they aren't swelling back up. I do Nia at home with a DVD I purchased for one hour each day. So far this year I have lost 90 pounds. My goal for this year was to lose 100 pounds, so I only have ten more pounds to lose and I will have reached my goal for the year. This is why I am wondering if I should go through with the surgery. The way I eat now and the Nia technique are both a way of life that focuses on the mind, body, spirit. It's working for me where every other thing I have ever tried failed. I have embraced a whole new lifestyle and I am loving it. My depression has gone away and I have so much more energy that I didn't have before. Six years ago I weighed 749 pounds. All together since then I have lost 229 pounds. I am only 45 pounds away from what I weighed when I was seventeen and after I get this next 45 pounds off I hope to be just as active as I was when I weighed that much. I wasn't stuck at home then and I was always on the go. I feel one hundred times better and I am getting closer to being able to get out of this house. The wheelchair is being taken away from me and will be replaced with a walker because my doctor feels I am ready for that and once I have it, I will be able to go anywhere I want. In fact, I am moving to the east coast in less than a year and I can't wait. I have so much planned when I get there.
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