World Lymphoedema day

It is that time of year again when we build awareness of Lymphoedema …. March 6th is world Lymphoedema day .. Lets celebrate as a community and support each other while we share with others … This is the time to educate others on this disease that is so misunderstood.. Let March be an important time where we share our stories, let us show the world what it means to have lymphoedema …

 

4 thoughts on “World Lymphoedema day

  1. To Helen,
    Remember me? I have not been on this site in a while. After reading other peoples heartaches and adventures with LE I thought I would add my 2 cents again. I had the lymph node transplant and lymphaticovenous bypass in June of 2015 with Dr. Chang. I wrote all of the details from before my surgery up to and including the post op course of LE. I do not think I could have had the knowledge or the courage if it had not been for this blog site and for that I am so grateful.
    I have been asked to speak on LE at a nearby hospital at a wound symposium in May. I will do it but certainly do not feel like I am any authority on LE. I can only speak from experience. If I can answer any questions regarding LE I will be happy to do so. I do feel that I suffer from thinking my left leg is still big…it is 1 inch bigger on left thigh than the right thigh and 1 inch bigger on left calf than the right calf- my left ankle is about 1 1/2 inches bigger than the right ankle—-I have never had any pain and I try to keep my weight at around 116 lbs..I am 5 ft 3 inches tall. I do the best I can but I still feel very insecure and self conscious about wearing any type of knee length dress or skirt or bathing suit. I wear pants, or jeggings–my shoes size 7 1/2 do fit. I still want to be cured of LE. I do not want to wear a stocking any more, but I still do.
    I am a nurse in a emergency department and on my feet 3-12 hour shifts per week. I wear my compression stocking when I go to work and when I am off from work also. It just feels better. When I do not wear the stocking, which is a closed toe to groin on left leg, after a couple of hours my calf feels like it is swelling. You know, we are so much more than just a larger limb–we are incredible people who are courageous and are introducing the world to LE. Helping each other is fabulous. Any questions I can answer please feel free to ask or email me. Liz Wingo

    • Good to hear from you and that you are going ok .. life with Lymphoedema really does mean life and sadly I do not think we will ever get rid of out compression …surgery certainly helps and is a big plus but I still hope that one day they will find a pill to get rid of LE!!!! Wouldn’t that be wonderful .. take care ..even though I do not write new posts ai always stay connected and respond to questions etc ..xx

      • OMG soooo good to hear from you—I will never forget what this blog site has done for me and my ability to reach out and feel confident enough to find a better way. Life is good and I thank God every day for allowing me 12 cancer free years. I still feel I am supposed to do something with all that I have gained/learned from having LE. Of course, I wish this never happened to any of us BUT when given Lemons, you have to make lemonade.Someone famous said that at some point.
        Helen, I wasn’t sure you would remember me but you did and that means so much to me. The blog is on my mind very often, but I didn’t come back to it because I do not have any answers. I only have experiences .I have learned so much from reading other peoples posts and realizing we are all doing the best we can. I may go back to Dr. Chang for another lymphoscintigraphy to see the progress of the lymph nodes that have been transplanted, but then I am afraid the dye injected between my toes will injure the new lymph nodes.
        Anyway, I am supposed to speak at a wound symposium on May 5th on LE. I want to share my story and share my experiences so I can guide someone else and maybe eliminate their frustration in not knowing what to do and how to progress. The amount of time wasted from diagnosis of the LE limb to the actual wearing of the compression garment is too long and should be avoided. Unless you are famous, there is a 6 month time lag.and that It is terrible. Please stay in touch. I love your guidance–I feel I have reconnected with an old friend. Love, Liz

        • Lovely to hear from you again ..i think every time we tell our story we help someone else .. i always believe we learn more from each other from out personal experiences .. good luck with your talk I am sure you will go well ..

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