Lifslevande / Alive

Lord, I didn't realise that it was more than a weeke since I last wrote!! You might say that I have alot on my plate, I'm no using a serving plate to be able to fit all lifes challenges.....

I have had alot of pain in my KT foot, leg and hip since the laser treatment and tomorrow I have to call the nurse to see what she thinks about it all. The area of my body that's affected by KT is redish, tender and swollen- still. Doesn't seem right. When I elevate my leg or stand up, movement really, I get short of breath... I think I might have cellulitis or another kind of infection. Nothing major, just KT as it is...

I have also been back to see my Reumatologist. She is as un-focused as an doctor can be and she really scares the living light out of me! She thought, for six months, that she had taken all the immunulogical tests needed to rule out some quite serious conditions. I thought she had, so I was "happy" and figgured I was out of the woods.... No way hosay! The tests were never ordered, never taken... Now we are back on square one again and I migh have everything between reumatic vasculitis, Bechterews syndrome... It might not be as "mild" as arthritis. Well, lucky me!!!
I had to take a whole range of blood tests yesterday to try to fill in the gaps that my reumatologist "made".
I'm also about to see a neurologist as the doctors wants to rule out muscle diseases and/or neurological conditions. Lucky, lucky me.... NOT! Isn't KT enough...???

No, I don't feel sorry for myself! I really don't!! I'm just tierd, and feed up with this body that I live in. The person I am, the one who lives inside this shell of illnesses, pain and malformations is in fact a very active, sporty and agile person. My spirit, the person I am, is very lively and has got an immensly amount of energy and will power. But the body that all this power and spirit houses in is...dammaged. My body doesn't agree with the person I am!

It feels just like I have an ongoing panik attack lurking underneath the surface.... All I want is to get out of this body, to be the one I feel I am... My body will never, ever get any better. My KT is progressive and whatever reumatic or neurological condition I have, is also progressive.
If I'm lucky the course will slow down. If I'm lucky it will be as "good" as it is now for a long while instead of getting worse. As it is nooow!! What the f*ck!! That's not acceptable! I really can't accept it! I'm 29 years old, my body is in worse condition than my parents! Than my 78 year old grandmothers!!
I want to live! I want to run! Climb mountains. Swim across oceans. Walk for miles.  Have children. Buy a house for Louis and me. Idream of a house much like my parents house... Get a drivers license. A Car. Travel. Study. Get a job. Have some extra cach to use for exesive shopping. I want to be able to carry home my own groceries, to make my own dinner the very same day as I have been doing my laundry. I want to be able to get dressed without being short of breath or in to much pain. I want to live...I want to be active! Yes, I'm alive- but I want to live!!!

I'm sooo fed up with people complaining. No, I'm not special and I'm no hero- in no way! Anyone could do what I do, if they had to.
I know that most people don't see me as ill in any way, 'cos I don't have a cold, I don't have cancer. From the outside you can't really see what is going on in my body..
I'm not dieing tomorrow. I'm not complaining and yes I know I'm lucky- compared to others! But, what the hell! I don't give a fuck about the fact that people complain about how though it is to go to work in the morning- I'd do anything to be able to go to work! I'm sick and tierd of people complaining about a bit of pain in their hand or foot- try to be in pain in all the joints in your body! Tyr not to be able to cut your own meat when you eat, to drop your cuttlery all the time, try not to be able to button your buttons or tie your shoes. Try not to be able to wear shoes because of your vascular malformation!!!
I'm fed up with people blaiming "pain" when it's just a way to get out of duties that all have to do. Such as laundry, doing dishes and cleaning. Taking care of our own lifes. The once that really, truely are in pain and have problems that makes them unable to do things- they are the once that tries even if they fale! They do it anyway because they don't want it to be true, that their body is giving in on them....that they really can't... We do it our own way, just to prove to ourself that we are still alive, that we are still able...even if our bodies makes us unable. We do the things we really shouldn't do because we have to pay in pain and aches- just to prove to ourselfes that we are not getting worse...even if we are...

Yes, Yes, YES- I know! Everyone has their own problems and you should never, ever belittle anyones problems or malais. I know that we all have our own boundries. What is a problem to me might just be a tiny truble for you- and the other way around. It's just.... Open your eyes and see!! There are a few of us oth there who are not, at all, able to function due to our illnesses, syndromes and conditions. Sometimes I wish i was stuck in a wheelchair so that people could see that I'm in pain, that my joints are stiff and that my immunesystem is shutting down.
I'm so tierd of people not being grateful of what they have! I'd do anything to get a new body! To have a body that matches the person I am inside!
Don't feel that I'm trying o lecture you! Oh, please don't! I'm just so angry woth a few people.... People who are quite well but aren't greateful enough!
I don't think of myself as someone who is entitled to tell who is greatful of life and who is not. It's just that it hurst me so much to see people sit on their rare end and just leting others take care of their every day duties just 'cos they...think they are something extra. We are all obligated to take care of ourselfes... Be happy that your body works, that you can do things- even if they aen't fun... You can do them!

Thouh, I'm quite lucky! I have a lovely little dog- Louis! He's the love of my life and my companion. But I'm sure I have told you about Louis before :-).
A dog, and for me Louis, is the best medication in the world! Louis knows that when we wake up in the morning it takes a while until I can leave bed; not because I'm lazy but because I must give my body time to get going. Louis knows that and wates, patiently, for me to get going. The first walk of the day is always a short one, slow and a chanse for me to get my joints started.
Louis is a lovely help. He helps me to pick up things from the floor- no, he doesn't always return them to me. He fetches the mail, the newspapper and help me take my socks of. He helps me in the laundry room as I often drop things there.
Louis makes me smile! He makes me laugh and he makes me so happy!! In every way- he's the very best medication in the world! If the price for my happiness with Louis is me living in this malfunctioning body- then so be it! Louis is my everything!!!

Now, of to bed! It's quite late and I have been doing Louis'es and my laundry today as well as sorting out some things in our appartment. Tomorrow morning Carin one of my occupational therapists are coming here. This weeks last hospital related appoinment! Jihhooo!
I did just go online to check my e-mail and to buy some books online! I'll try tell you about the books I've ordered, I have a couple of favourite authors.

          Take care and enjoy life! Be happy for what you got and never forget to dream!!