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Carole Prior
Hi ~ I'm from the Pacific Northwest and grandmother to five sweethearts! I am grateful to hear about you from Lymphedema Products. My body, from head to foot, is affected by secondary lymphedema caused by Rare Adipose Disorders (RAD). Dercum's, Madelung's, Familia Multiple Lipomatosis, Cogan's, sensory overload, brainfog, and recently lymphedema have transformed my body and life. I look forward to listening and learning as I become a part of your community! blessings, carole
April 26, 2012
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jill labiosa
hi Everyone! I have had lymphedema for thirty years.. Started when I was19. I have been through the stockings, pumps etc etc and unfortunately the treatments available in 2012 are still as antiquated as back I. 1982 when I wS first diagnosed..I went three years not properly diagnosed, and when I finally was in NYU, the same treatment t plans all are pretty much the same..HOWEVER what has changed..are the many pele who now suffer with this condition, and the support groups out there. when I was first diagnosed, I was a young girl.I never felt so alone..There were no books written on te sungect of lymphedema, no support groups..I fel I had to constantly elaine myself, and was so very self conscious of my right leg.II I was told it was lymphedema prefix primary..meaning, I was born with this, BUT it surfaced as a teenager..The fact that I couldn't wear normal shoes, wS a tough o e for me, ESP as a teenage girlI have 2 daughters 27 and 19 who have always been sympathetic to my situation.I have had a supportive family ..They know how important it was for me to keep elevated and keep the swelling down..The tissues have gotten very fibrous as I've gotten older, a d it's more difficult to massage thel
Lymph, as it was when I first develped it..I feel the last 10 years it's gotten ore difficult to ma age even with the pump and stockings. It looks like a baby elephant I carry with me..Even though lymphedema hasbecome a part ofme..sometimes it's still so difficult to accept. For example, my solder daughter is having a destinatio wedding g in punta Cana I. July,finding a dress that covers the leg, S well as nice pretty shoes that will make me feel goo that day.. I will be happy to Talk to anyone of you. I. Sure you know EXACTLY how I'm feel g, because from reading hour comments, I can relate to each and everyone of you! I wish they had these groups back I. Tne day when tis all started..I think it would have helped tremendously, on every level. k guess cor those who have struggled with this condition for as long as Ihave knows EXACTLY what I mean! I hope to hear back fro. You, and am excited to have found this site. Have a GREAT weekend to you all!
May 4, 2012
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julie martinez
Hi, I'm new here. I'm so confused. I'm an 11 year Breast Cancer survivor and have been a victim of arm lymphedema for 1 year. Last year, 3 bc tumors developed in my upper left arm, thus beginning the lymphedema nightmare. Many MLD massage treatments, bandaging, sleeve garments all last year. Was on chemo all of last year with little success in shrinking the tumors. I had the small superficial middle one on the back of my arm surgically removed for biopsy/tissue study in Feb. No changes in pathology and no problems with surgery/recovery. My medical oncologist conferred with the radiation oncologist to see if radiation of the 2 remaining arm tumors could help and not harm the situation. I was very leery, but she (radiation oncol) was VERY positive that she could shrink the tumors and improve the lymph drainage in the arm. My husband and I were so excited. She said 20 to 25 treatments, so 4 to 5 weeks. I've now finished 3 weeks of radiation, at least one week to go ... the tumors feels the same to me and my arm has once again blown up. I don't know if I should quit or not. I don't know if it's got to get worse before if gets better, like this is just a temporary reaction and then it will be better or am I doing permanent damage to my arm. ugh! The surgeon said radiation will make it worse, the radiation oncol says surgery will make it worse.
April 30, 2012
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