Quite a while since last...
...I'm very sorry for that!
I have had alot going on lately, nothing serious but just life and things that needed my attention.
As usually I have had alot of hospital appointments! They make me very tierd and when I get home I just feel like taking it easy, cuddling with Louis and trying to take care of myself.I have also dedicated more time than usually to the Swedish Klippel Trenaunay Syndrome Network. We need to get thongs going and trying to sort that out takes it's time! But it's alot of fun and it gives me alot of satisfaction! The network is growing, doctors, specialists and others are alos finding their way to the network. Slowely, but sure, we are growing!!
The fact that I have felt very hurt lately has alos made me step away from my blog for a while. I feel alot better when I write and writing about the things that feels wrong, things that I feel are unfair...well, I have learnt that I can't do that in my blog. Misconceptions are mans largest problem. That is the main reason why I have chosen not to write for a while!
Yes, of course I could have writen about a milion other things- but when you feel down and hurt it's hard to try to find other topics, it's so easy to slip into the topic that hurts you so. I have choosen not to hide anything in my blog, I have nothing to hide! The consequences are that I need to be careful what I write, I can't always be brutaly honest.
Well, I need to come to terms with things before I feel that I can bruch away the anger, the sadness and the pain! I'm growing with the task!
Well, now I'm back! I have grown a bit, hihi!
Since last I wrote alot has happened! I can't tell you about everything so I'm more or less starting from today!
I have been to see an opthamologist this morning. I'm on an anti-inflammatory drug called plaquenil which can damage your way of seeing colours. The opthamologist thought it was a borderline case, 'cos I had some problems to see chades of green/grey and blue/grey. Bumer! Hopefully this won't mean that I need to stop taking the medicaion. I haven't been able to feel if it helps yet but I really hopeit does. I need something to decreas the inflammation in my joints 'cos they are red and sore. It's difficult to use my hands and fingers, I keep dropping things and my fingers are blueish and cold! My hips hurt alot and soe does my left knee, both my ancles and my back...lord! Do we need to even mention my back and my neck?!!
I just wish that KT could be my only problem! But no way!!!
I have a really great physio, Anna. She does now want to try something called kinesio-tejp. I don't really know the english word for t but it's something like what they do to atleets when they are hurt or in pain. They put fabric like tape cround the joint that hurts. The tape helps the circulation in the sj´kin and that is said to, somehow, help the joint. I don't really understand the concept yet as I was told about it yesterday. I need to google and read about it! Thouh, now I have two pieces of tape on my body to try if I'm allergic to it or not. So, I have one piece on my KT-skin and one on my "normal" skin. Hopefully I'll be able to try this new treatment!! I'll keep you posted!
God, my phone is ringing non stop today! Strange, it never ever rings!! Time just flyes by and I have to get going! I need to take Louis fo a little walk, have some lunch and prepare supper before I go see my occupational therapist. She will make me a new splint for my right hand that I will have night time. My fingers are bent and I can't stretch them, that's why I need it.
Take care!!
I have had alot going on lately, nothing serious but just life and things that needed my attention.
As usually I have had alot of hospital appointments! They make me very tierd and when I get home I just feel like taking it easy, cuddling with Louis and trying to take care of myself.I have also dedicated more time than usually to the Swedish Klippel Trenaunay Syndrome Network. We need to get thongs going and trying to sort that out takes it's time! But it's alot of fun and it gives me alot of satisfaction! The network is growing, doctors, specialists and others are alos finding their way to the network. Slowely, but sure, we are growing!!
The fact that I have felt very hurt lately has alos made me step away from my blog for a while. I feel alot better when I write and writing about the things that feels wrong, things that I feel are unfair...well, I have learnt that I can't do that in my blog. Misconceptions are mans largest problem. That is the main reason why I have chosen not to write for a while!
Yes, of course I could have writen about a milion other things- but when you feel down and hurt it's hard to try to find other topics, it's so easy to slip into the topic that hurts you so. I have choosen not to hide anything in my blog, I have nothing to hide! The consequences are that I need to be careful what I write, I can't always be brutaly honest.
Well, I need to come to terms with things before I feel that I can bruch away the anger, the sadness and the pain! I'm growing with the task!
Well, now I'm back! I have grown a bit, hihi!
Since last I wrote alot has happened! I can't tell you about everything so I'm more or less starting from today!
I have been to see an opthamologist this morning. I'm on an anti-inflammatory drug called plaquenil which can damage your way of seeing colours. The opthamologist thought it was a borderline case, 'cos I had some problems to see chades of green/grey and blue/grey. Bumer! Hopefully this won't mean that I need to stop taking the medicaion. I haven't been able to feel if it helps yet but I really hopeit does. I need something to decreas the inflammation in my joints 'cos they are red and sore. It's difficult to use my hands and fingers, I keep dropping things and my fingers are blueish and cold! My hips hurt alot and soe does my left knee, both my ancles and my back...lord! Do we need to even mention my back and my neck?!!
I just wish that KT could be my only problem! But no way!!!
I have a really great physio, Anna. She does now want to try something called kinesio-tejp. I don't really know the english word for t but it's something like what they do to atleets when they are hurt or in pain. They put fabric like tape cround the joint that hurts. The tape helps the circulation in the sj´kin and that is said to, somehow, help the joint. I don't really understand the concept yet as I was told about it yesterday. I need to google and read about it! Thouh, now I have two pieces of tape on my body to try if I'm allergic to it or not. So, I have one piece on my KT-skin and one on my "normal" skin. Hopefully I'll be able to try this new treatment!! I'll keep you posted!
God, my phone is ringing non stop today! Strange, it never ever rings!! Time just flyes by and I have to get going! I need to take Louis fo a little walk, have some lunch and prepare supper before I go see my occupational therapist. She will make me a new splint for my right hand that I will have night time. My fingers are bent and I can't stretch them, that's why I need it.
Take care!!
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