Pain and Tiredness
I have been in alot of pain the past few days and the pain makes me very, very tierd. This is why I havne't been online writing on the blog that much....
The reasons for exesive pain in KT, are many. In my case it can be everything from exhaustion, walking to much or being "to" active to cellulitis or smal blood clots. I do also have alot of pain due to the vascular malformations that I have in my joints and skeletton in my right foot, leg, hip and on my back. This to is very painfull and often causes me many sleepless nights.
When a KT:er speak about cellulitis we don't meen the kind of cellulitis that women nowadays talk about. Cellulitis in KT:ers, and others, is an inflamation in the skin and tissue around the vascular malformations and/ or lymphs. It's very painfull. The reason for cellulitis can be an bacterial infection or somethig going on with the lymphs and the lymphatic fluid. Patients with Klippel Trenaunay Syndrome, KT, often have cronic lymphede. To prevent swelling and problems it's therefor very important to use a compression garment such as a medical supportstocking.
When a patient with KT gets cellulitis they often notice, or feel the inflammation popping up before it comes. If it's very painful and red or if the area is big, it's important to go see a doctor who can prescribe anitbiothics. Thouh, many of us who gets cellulitis often allready have antibiothics at home. At times the inflammation can be so bad that you have to go to hospital for IV-antibiothics.
I do get those cellulitis inflammations quite often but as I'm quite used to the signs I know how to nip it in the but and take care of it before it becomes to bad. To put a special kind of cream on the area helps, cold and wet tissues- and rest!I know that I easily get cellulitis if I sit on hard surfaces, if I catch a a cold, if I wear jeans to often and things like that. Thouh, even if I know these things it's somethimes hard to avoid. I mean, even if I have a condition such as KT, I still like to look my best and I kind of like jeans. I know, sounds silly- but 'm still human ;-)
If you want to read more about Evaluation and Management of Pain in Patients with Klippel Trenaunay syndrome go to http://www.pediatricsdigest.mobi/content/115/3/744.full
This paper talks about nine known causes of pain in KT.
Thera are so many causes of pain in patients with KT.... Sometimes it makes me depressed to realise how much there are that can go "wrong" when you have KT. Pain just makes you aware of the fact that you are alive, but there are other things that can make life very fragile in an instant- such as blood clots. I get them quite alot, but they are the size of a pee and often gets stuck in my superficial veins. I can feel them and the area around gets tender. When they are superficial they don't take the de-tour to ones heart and lungs. It's hard to explain but when you have had such a serious condition as KT all your life, you know what signs to beware of and when to see a doctor. When to worry... 'm not much for worrying, but I know that my mother is... I wish she wasn't but it's hard to tell a mother not to worry.
I'm old enough now to know that life isn't anything to take for granted and that KT is a syndrome that wont make your life a walk in the park.
Thouh, everyone will go through things in their lifes that will give them perspective on life. The difference is just that I have, just as many of my fellow KT:ers, learnt that you shall never ever take tomorrow for granted! Tomorrow might be a day when you are in so much pain that you can't get out of bed, you might have caught an infection again or you might have a new lesion. I used to say "well, I'll do that tomorrow" or "I'll travel as soon as I'v graduated" or things like that. I might get worse, and what if I lose the chance to do the things that I want to?!!? No way!!! I'll live life to the fullest, as best as I can!
I'm just happy to have the days where I can do the things I need, and want, to do. There are to many days, and nights for that matter, of pain and bleedings and infections. Hospital appointments, wound dressing and medications. I need to be me too!!
One day at the time, one challenge at the time! Life is just so fantastic and I want to live as long as I'm alive!! I don't want to sit on the side and watch people live and enjoy. I don't want to think that I really should have done this and that when I had the oppertunity to!! I will take the chances that I can and I will embrace the adventures that I can embark upon!!!
So, now I'll put my legs back up in the soffa and rest. Louis is allready sat in the soffa waiting for me to cuddle up beside him, holding my arms around him and listening to him snorring!! I don't know what on earth I would have done without my lovely little dog!!
Sees the day and see you soon!
