Thursday, 2 May 2013

Patient weekend 2013

More or less the view from my room.

A couple of weeks ago was the annual members weekend of the patient association overhere. It went well, I had a good time. Tina was there and a couple of others I had met before and even more that I had seen before. Tina, myself and a couple of others formed a little group who sat together at meals and hung out, it was really good. I think we were all 38-48 years old.
Lymphedema wise there wasn't really much news which was disappointing as I think lots is going on around the world, ie the LVA-operations. I made a suggestion that they have a surgeon come and talk about the developements in this field next year.

My room was overlooking the sea, or rather a strait between two islands, and two magnificent bridges. I really enjoyed that.

It was good to be with Tina again, she looked fabulous, as always. She is a wizzard when it comes to finding clothes that works around her bad leg and altering it so it fits and no one can see she has Lymphedema. Even if I had her talent I don't think I would succeed as the difference between my two legs are bigger than hers. She wears relatively tight pants and jeans, on me the difference would show if I did that. I can't wait to go to the personal shopper again but the one that I want is not back from her leave until December so I think I will wait. Could do with some new input.

There were many patients there with arm lymphedema due to BC surgery. Alltogether many more Secondary than Primary, but we were there! In our little group was a youngish woman in her late 40ties suffering from Primary Lymphedema most in her lower legs but starting to show its ugly face in her hands too, well actually most of her body, including her face. There was also a lady who had lymphedema in her genitals, she stood up and spoke about that. Quite brave, actually.

There was also a really sweet 50-year old lady with enormous legs. She had Primary Lymphedema in both legs. She may very well be the most positive and happy person I have ever met. I chatted with her and she said that some years ago she had suffered from stress and had a real hard time with her Lymphedema flaring up crazily and coming out on the other side nothing could ever throw her again. She was so in peace with herself and really seemed to cherish the fact of being alive. An inspiration!

For Saturday nights entertainment a line dance event had been arranged. It was good fun. Not all could do it due to our condition but most of us had a go. A lady who is there every year, about 50 years old I'd think, with Primary Lymphedema in most of her body - not that you can really tell - and lots of other health issues going on - really went all in and had a blast. It was so good to see. She had dressed up real nice and despite all her very serious illnesses she was dancing, laughing and having fun as if there was no tomorrow. Refreshing and indeed inspiring!

I really do recommend joining a patients group if at all possible. It really means a lot to meet people in the same situation. One can feel like the only person in the world with this akward condition but you know what, there are millions of us out there. On Wiki it says as much as 140 million people! Mindblowing.

That's all from me today. Have a great weekend, everyone!

No comments:

Post a Comment