Monday, 19 March 2012

Lymphedema patient weekend 2012

This weekend I attended the annual patient weekend with the Lymphedema Patient Association of my country. It was a really good weekend, very positive and very giving. It's been so good to interact with other lymphers, discussing various matters, sharing info and generally just being with others with the same condition. Not feeling like a freak. Many of the others were breastcancer related arm lymphers but there were also some legs. We all wore nametags, blue for legs, green for arm and yellow for lipedema. A P or an S indicated if we were Primary or Secondary. Really good, and a good "ice-breaker". People would say to each other "I can see you're a primary too (there weren't that many Primary), have you had it since Birth" and then a conversation was on the way.
The weekend was a mix of speaks (a German Lymphedema specialist, a therapist, Lymphedema doctors, a fitter, a stylist etc.), workshops, a showing of a new DVD about Lymphedema the association has created, and various distributors showing off their products (garments, shoes, pumps etc.). One of them was this product (for now I link instead of writing the name). Apparently it can be an alternative to a Lymphedema pump. A Lymphedema therapist spoke about the product, she had had good results with it. Also this product was available to see and learn about. I'd like to investigate more on both of them once I get time.
The workshops was a chance to try or hear about Mensendieck system, acupuncture and water gymnastics. I had signed up for acupuncture, very interesting. The acupuncturist said that Lymphedema is related to the spleen meridian. I thought that was particularly interesting as the Qi Gong training I do also deals with meridians and I'm wondering if there are exercises I can do to stimulate the spleen. I will ask my trainer. I tried acupuncture 14 times when Lymphedema first started, nothing happened. However, the clinic represented at the weekend had good results, they specialised in Lymphedema. Still, now that I know more about Lymphedema I am terrified of triggering another outbreak, so I won't try again.

I met some really nice people. Most of the people there were probably 60+ but there were also some younger than that. I spoke to a 37-year old woman with Primary Lymphedema in both legs. I could relate to her, and I'm glad I got to talk to her. Her legs were huge. I also hung out with a very stylish woman that I had seen two years ago but didn't speak to at that time. When I saw her back then I thought she was around 30 or so but when we sat at the same table for dinner the first night this weekend she mentioned her 25-years wedding aniversary last year. "Huh?" – I thought. It turned out she was 48! She looked so good and she really knew how to dress around her condition and make the most of her options. She had secondary Lymphedema in one leg. She was indeed an inspiration, more about her in a separate post soon.

There were lots of socialising at breaks, mealtimes and at a walkingtour in the beautful surroundings. The hotel was really nice, great pool and most important – a pancake station at the breakfast buffet ;-)
I am glad I went. I can strongly recommend other Lymphedema sufferes to join a patient association and attend their meetings etc., if possible.

Coming up: At the fitter, swimming and sophisticated Tina.


  1. Hi LymphedemaGirl! I live in the cold north, and I'm sitting at my house tonight - still dark, still cold (even though its the second day of spring!) - depressed because my leg lymphedema seems to be getting worse. As my therapist puts it, "its a chronic, progressive it progresses". Not the greatest thing to hear. So, I decided to search out shoes for lymphedema and I came across your blog. You rock. Really. Reading your blog is calming, and I thank you for taking the time to do so.
    Regarding your last post: I am an acupuncturist. I have had secondary, left leg lymphedema for six years now and I think I keep it under good control. I have been giving a lot of thought lately to looking at lymphedema through the eyes of Eastern Medicine (acupuncture, qi gong, ayurveda) since western medicine (at least here in the U.S.) considers lymphedema a "side effect" and therefore, not worthy of intense study. As I read your post I wondered what your thoughts were on your qi gong classes and lymphedema - that makes a lot of sense to me!

    1. Hey you :-)s
      Thank you so much for your comment and for your kind word. It means so much to me with feedback. It makes me keep writing when I learn that fellow sufferes out there can benefit from my writings, so from my heart thank you.
      I am not sure I agree with your therpist about Lymphedema nessesarily being progressive. Some stay the same year in and year out. I am sorry to hear yours is getting worse. It seems mine insists on staying at a certain level, now my fitter wants me to get a knee high to wear over the thigh high when working (I sit a lot) to see if that will hold it better.
      About Eastern Medicine, I too am intrigued about this and I'd like to research more. I have tried two acupuncturists, the first one was Chinese and while I was having treatment at her clinic I got my diagnosis and she said she couldn't help me. I asked her how Lymphedema is treated in China but she said it was the same as in the Western world - physiotherapy etc. However, I would like to investigate more about this. It is dificult though when one don't speak or read Chinese. What do you think about the spleen being related to Lymphedema? Do you use acu on yourself, and have you ever treated any Lymphedemapatients?
      Reg. my Qi Gong; I found that a little while after I first started I noticed my foot and lower leg would not built up as quickly as before when I didn't wear the stocking (when taking it on and off) and I also thought my calf went down a little tiny bit. I am still waiting for a breakthrough as to feeling more Qi/Chi, and who knows what can happen once the Qi really starts kicking in... Amazing results on various conditions has been seen.
      Overhere too there is little focus on Lymphedema. Many doctors know nothing. My patient association is doing a good job of creating awareness and I think generally throughout the Western world we will hear more about it in the future.
      Warm regards.

  2. Hi!

    I'm am so happy I found your blog! I am 27yrs old and suffer from lymphedema on my left leg caused from a pulmonary embolism that initiated in my leg. I would love to chat with you! Do you know of any shoes that work? I get so depressed I cant use normal shoe in the winter or find wide enough pants. If you'd like add me on FB

    1. Hello Christina,
      Welcome to my blog, I am glad you found me :-)
      I wish I had something good to say about shoes, but for me too it is a nightmare finding something that works. Have you checked out my shoeguide here on the blog? Perhaps there is something useful there. Personally I now buy shoes in two different sizes, that has definitely made my life easier. UGG style boots are great for winter, have you tried them? I got some cheap replicas last year and they were just what I needed.
      Warm regards,