Welcome to my blog!
Wow, so much encouragement I’ve got for my blog! And I’ve just started! I do really, really appreciate all of the support and I hope I’ll be able to picture my life in as a sincere way as possible!! I want to show people that it is, really, possible to live an exiting and wonderful life even if you live with illnesses that you, might feel, is taking over your life.
As I wrote yesterday, in Swedish, I will be one of those bloggers with a mission! I want to write about life, about how sweet it is and that life can be a feast even if you live with serious illnesses. For those of you who doesn’t know, I’m diagnosed with the very rare congenital syndrome called Klippel Trenaunay Syndrome (KTS or KT). It’s a quite severe vascular malformation that, in my case, is mostly located in my lower limb- right side of my body. My artery and my veins kind of run in to each other in some places and form shunts. It’s hard to explain but in a few short words I can just say that KT makes life a bit more of a challenge than it should be. If I’m not wearing trousers you can see the KT, it’s very prominent and looks like my leg has got millions of more blood vessels than a ordinary person. Sometimes people freak out, even doctors, and I really can’t see why. I’m a human being, a person that happens to have this very rare painful disorder.
Life with KT is…different in so many ways. At least for me it is. I live with constant pain, circulatory problems that makes it difficult to sit, stand, lay down and to walk and that increases the risk of bleedings, cloths and other not so pleasent things. Must say, it's a bit of a test. I never ever feel that I can relax.
When I was 10 years old my KT had so badly damaged my knee that the dr’s had to surgically remove most of the things that makes up a knee. So now I walk with quite a limp. It’s almost 18 years ago since the surgery but sometimes when I walk past a huge mirror or a window I stop and stare- I can’t believe that that’s me!! Am I really walking like that?! But then I say to myself- “Does it really matter?! You are alive! You are able to do so many things, despite the fact that your leg is….a hell of a mess ;-)”
Thouh, I often think that many things in life are not despite KT but thanks to KT. I don’t think I would ever be the person I am today if it were not for KT and what KT puts me through. I don’t think I’d ever meet all the wonderful people that I get to meet and I would never ever be the Marie that I am today.
Life is not only KT!!
I live in a lovely little apartment in a small Swedish town called Ängelholm. I live just 3 minutes from the train- and bus station, 3 minutes from the High Street with all the shopping and a short walk away from a huge forest and a beach that reaches for miles. I live together with my lovely little miniature pinscher Louis. His kennel name is “Joy of My Life” which just suits him perfectly!
At the moment I’m too ill to work or study. A few months ago I was diagnosed with some form of arthritis, as well. As if KT wasn’t enough…ugh! If KT is painful, I don’t know what I shall call the arthritis! Lord does it hurt or what!?? Stiff, red and swollen joints. Fingers, shoulders and hips that doesn’t obey… Hmmm, as if KT wasn’t enough.
Well, before everything got worse I was a student at the University of Lund as a political science and doing some religious studies. But at the moment I don’t really know where life is taking me. I don’t know if I’ll ever be able to study, I don’t know what on earth I will be able to do- I’m still getting to know my body and finding medications and solutions for life so that I can be as active as possible and participate in society!
I try to make everyday a bit special. You really don’t know what tomorrow might bring and in my case it might bring more pain than today, hospitalisation and things as bad as a stroke or a major bleeding. Things I try not to think about. I have just realised that life is what I make of it and if I just sit around and think about things that might happen and think about how ill I am…then I’ll never ever live! And I’ll miss out of life itself!
This is why I named my blog Lifslevande (with my own twist on the Swedsih spelling)which in English is Alive!
