Lifslevande / Alive

I don't really know what to write that makes you all want to keep reading my blog.... It feels like all I'm writing about is hospital appointments, KT and the ups and downs of life. Thouh, all of this is really my everyday life....
I do have alot of hospital appointments; this afternoon two of them. It's Wednesday and I have allready had three appointments.
This week alone it adds up to...., lets see..., five. Then my therapist is on holiday so that is one appointment less. I just can't believe that I spend so much time of my life in the hospital.

Thouh, I was thinking, I must divide the appointments into categories. Wellness and Illness.

Wellness:
These are things that keeps me well, that makes me maintain the functions that I have and things that helps me "survive". These are things that gives me a better quality of life

-Hydrotherapy/ aqua exorcise twice/week
-Therapist once/week
-Nurse once/week
-Occupational Therapist, Carin once every fourthnight
-Occupational Therapist, Katarina once/week
-Physio Anna once every three weeks (and at aqua)


Illness
These are things that I have to do, o people that I need to see to stay more or less- alive. Doctors I need to see not to get to much worse and things I need to do to monitor my health.

-Vascular surgeon
-Reumatologist
-Neurologist
-Orthopedic Surgeon
-Plastic Surgeon
-GP (Husläkare)
-Bloodtests
-Nurse at the medicine clinic
-Occupational Therapist, Karin R
-Occupational Therapist, Pernilla

When I look at it like this, it feels less depressing!! Moste of the things I do regulary are things that helps me feel good! They are things that makes me better, in a away, and things that boosts my health. Yes, they are still things that I have to do to feel okey. Things that I need to do to maintain the muscles that I do have, the strenght that I have and the functions that I still have!

Yes, I do get worse....gradually. Both my KT and my reumatic illness are progressive illnesses. But, nevertheless, the wellness things that I do helps me to slow down the actuall progress.
For exampla; the hydrotherapy helps me to maintain the movment that I have in my joints, it helps me build a bit of muscles but in a controlled way. Did you know that you only put 12% of your body weight on your joints when you are in neck-deep water?!? So, it helps me quite a bit! Also, the freedom of being able to move a bitt better is fantastic!!

My therapist she helps me to saty sain.... With a body such as mine, and with the things that keeps happening with it, I do really need someone to talk to. Someone who knows alot about KT, who knows alot about how a body works and some one who wants to listen. Gunilla is fantastic! A therapist does only have sessions of 55 minutes, but she always books me for 1½ hours every week. She knows how much I need to talk to her, need someone who can help me see things from a different perspective and who sometimes can say "hey, Marie! Look it's not really as bad as you think". And sometimes she says "Marie, you need to wake up and see that your body isn't fasioned the way most peoples are....".
I have a hard time accepting the fact that Im looked up in a body as ill as mine is. How I feel inside, who I am inside doesn't really rime with the body I live in...

My nurse Ewa  helps me to keep track on my blood pressure, my weight, what to eat to feel better and so oe. She is also a very needed support as she knows alot about how a body is supposed to work. She helps me to understad what I can do to make things as good as they can possible be!

And my occupational therapist Carin, she is fasntastic! I have only known her for about 6 months, but she is such asn help! She helps me with things i never, ever thought could be of help to me! Such as apps for my iPhone! And a thing suc as schedules to get things going; not forgetting medications, not to doublebook appointments and to give myself tim to be and to enjoy life!! She tries to encourage me to fins ways that can help me to a better life, a life with as much quallity as possible! Carin helps me to find things that can help my everyday life; aids for my kitchen and so one. She also helps me suggest technical things that can make my life alot better!
The iPhone is one of those things as well as my notebook. Another thing that might help me alot is an iPad. Keep on dreaming Marie!!!

It really helps to catagorice things! To see that not everything is there to keep me alive, many of the things I do every week are things that I do to maintai the functions that I do have! And also, may of the wellness things are things that I kind of enjoy! Such as hydrotherapy!!!
Maybe you should also put things into perspective?!? See that not everything you do, conected to your illness or your syndrome, has to do with being ill!

Lord, time just flyes by!!! I need to get going! My first appointment is in one hour and I need to get dressed, take my lovely little Louis for a walk in the rain and then take the 7 minute walk to the hospital. Hopefully I'll have an hour inbetween the appointments and my plan is to sit in the cafeteria; read, have a cup of tea and a lovely sugery cake!!

                                  
                                                         A little bridge over a creek in the forest

I'm not a very frequent bloger at the moment, I'm very sorry about that!
Life is quite challenging at the moment; I'm in alot of pain both in the areas of my body that's affected by KT but also in my joints. It's so typical autumn-pain. It pops up when it gets colder. Thouh, what's going on with my KT I really don't know. My foot has been bad for quite some time now, but it got worse after th elaser treatment I had a month ago. Now I have problems with big areas of vascular malformations underneath my foot. Really, on the area of the foot you walk and that takes all the pressure from your body... It's very, very painful to walk but when I have walked for a while it's almost like you get used to the pain. But as soon as I stop and feel that the pain isn't as bad, lord starting to walk after that is like putting your hand on a hot stowe!
Thouh, I need to walk! I really do! As long as I  can walk I will! I love to go on walks with Louis and I love the freedom of going places myself; no buss, no car....
It's just that it's so painful. My hart rushes at times as it hurts so much... Oh lord, why me?!? Well- why not!!!

I'm not to keen on my body at the moment... It feels like I'm sentenced to life in jail! I'm on death row and I don't know when it's time for me to....go...
My brain and my soul wants so much more than my body is able to do! I feel so agile, so energetic and so....young insede- but my body isn't really the mirror of that. It's not as strong as I feel that I am (at times). I can't do all those things that I want to do! And believe you me, there's alot that I would like to do but can't!!
I want to be let freeeeeeeeee!! God, I'm frustrated!!

I know, I know! I do focus alot on the things I can't do...but that's where I am at the moment. I feel traped, I feel alone and I feel angry! So darn angry at my body and at the cards I have been delt in life!!!
My future dreams are crushed!!! And that makes me soooo angry!!

Thouh, life revards the courageus few!! And I want to be among those people who beats the odds, who rice above their challenges and who lives happy even thouh life delt them unfair cards.

                               "Nothing saves anyones life, Sir.
                                It just postpones their death"
                                                       (History Boys)

                                  I'm not who I am despite KT,
                                               I am who I am thanks to it!!!


                      

I have been doing a bit of Swedish KTS Network "work" this morning. The network has kind of avalanched into being a bit more forefront quicker than I thought! We have allready been invited to our first international congress! We are invited to have our own information table; to inform about our network but alos about Klippel-Trenaunay Syndrome and life with a malformation as inovacive as KT.
I have been e-mailing alot this morning; trying to get things going as we have quite alot to do before we can even feel remotely calm about our task. What we need now is:
- A nicely designed web-page that carrys all the informatione needed to let people know about our network and about KT, as well as about other vascular anomaleties.
- A loggo!!!
- To register our organisation so that we are allowed to recieve donations without needing to pay tax

But as I always say, one thing at the time! No one benefits from a gastric ulcer!!

It's very fullfilling to get this network going! It feels wounderful to be able to use my "bad" experiences to something positive, to be able to help others so that they wont have to experience the problems that I have! I love the feeling of being able to help, guide and give advice. The feeling of helping another person get a better quality life means so much.

My dream now is that the network will grow; more patients with vascular malformations and vascular anomaleties will find therir way to us! That we will be able to get organised in such a way that we can be a help to doctors when it comes to knowledge about Klippel-Trenaunay Syndrome. KT is such a rare congenital disorder and that makes it hard for physicans to know what to do to help a patient.

KT is a syndrome and the word syndrome means that it is something "quite like". To be diagnosed with KT you need to have at least two of three anomaleties:

• Portwein stain/s or birthmarks
• Malformations in blood- and lymphatic system
  Rare cases might even have malformations in the aorta or abnormal conections between veins and aorta
• Enlarged soft tissue and/or hyperthropy

KT is very complex and manifest different from patient to patient. Some KT:ers haver very large body parts as some KT:ers does only have a slight blush of the skin that remins them of their KT. The thing with KT is that it's not only what you see that you get! The inside of a KT:ers body might look very different due to the vascular- and lymphatic malformations.
So, to let doctors know about our lives, our problems and how it is to live with KT- that is very impirtant to me!
Growing u I was told that my KT would stay the way it was for ever and ever and nothing would ever change. Now I know that that was doctors who didn't know a thing about my coindition! KT makes life a challenge! KT changes, very much so. It both grows and moves, it changes in character and gives you suprices you never thought of ever! KT is progressive.....and that makes life a bit tougher than it's ment to be.

I will make KT and the Swedish Klippel Trenaunay Syndrome Network my life challenge! I will not let KT beat me!! I will only let KT tecah me. I will take upon myself to battle the syndrome, to enlighten others about it and to make sure that no one will ever be treated by doctors the way I have been!

My hope and dream is for the network to grow and to be known among physicans all over the country! I want the network to be a trusted organisation that people will turn to, that doctors can turn to and that will be able to kickstart KT reseach in Scandinavia!

                 I know there is no cure, I know there is no way to survive it-
                                                     but I know there is a way to live with it!!! And I will!!!

My neighbour has a male cat, Benjamin, who runs around in our common garden wheenever the weather allows him to. When he wants to go in he runs all the way up the stair to the second floor and mjaaaauuuuus outside his masters and mistresses door. If I'm on my way in or out with Louis, I ring the door bell so that they can let Benjamin in.
This morning, on our way in we meet Benjamin. Louis and Benjamin greated as they always do and I rang the door bell- no answer. Okey I thought, no one home. I had Louis on my arm while opening our door and all of a suden Benjamin took a run for it into our appartment! Oh lord! What now?! The cat never ever did that before! Shit!
So, I tried to catch the cat who was set on staying in our comfy appartment. He drank a bit of Louis'es water, tried his food and then ran into the bathroom and sat in the sink. You can only imagine how angry Louis was! Someone tasted his food and his water- nooo way!!! I couldn't grab Benjamin with Louis on my arm so I had to let go of Louis. I managed to get a hold of Benjamin when he sat on my WC and when I was about to lift hem I thought "hell what a heavy cat!!!" whe I realised that Louis was holding on to Benjamins leg!!! Lord!!
It l ended well- no one hurt and everybody happy! Thouh I can't promise that Louis will ever great Benjamin nicely again...

Today I'm being domestic! Well, I'm cooking....
I was supposed to go see one of my many occupational therapists Katharina today, but she desided to worked despite a very bad cold.... Which means that I can't go see her due to the lack of "fighting spirit" in my immunesysteme.
Well, there's nothing bad that doesn't come with some thing good! At least I get a day of, a bonus day withouth any plans what so ever!! It feels like life smiles upone you when you, all of a sudden, just get a day to do whatever you feel like.

What I'm doing is making a huge beef stew with carotts and seasonal seasoning! It smells absolutely divine- if I might say it myself... Hopefully it will tast just as good! It's barely lunch time but I decided to make the stew and let it simmer for a while, it makes the meat lovely and tender. Then I, or we 'cos Louis just can't wait till it's time to eat!!, can eat it when we have finished doing what ever else we need to do today!

I'm such a book worm!!! I love to read and I believe that a persons book shelf tells you alot about the person. Mine is filled to the rim with books and I just love to go through them once in a while and remember the lovely moments I had with each of the books!
I always feel sad when I finsih reading a book... It's like parting with a dear freind. You just want to hang around the story for longer and know more about the life of the characters.

Since a few years back I'm totaly in love with the American author Jodi Picoult and her books. She writes lovely, absolutely fantastic, dramas. They do always treat ethical dilemas such as a childs very difficult, untreatable illness or relationship crises.

At the moment I'm reading one of Jodi Picoults first book "The Pact" which is about two teenagers in love; Emily and Chris. They have known eachother for all their lives; as neighbours and almost siblings. The fact that they end up as a couple in high school doesn't suprice anyone. But the fact that Chris ends up in the emergency room with a head wound that needs 70 stitches and Emily...ends up in the morgue is a horrible suprice to everyone!!! Chris says it's a suicide pact that went wrong but the police believes it's firsta degree murder.
Families that have been neighbours for twenty years, chaired everything from chickenpocks to car pooling is now utter anemies...
I can barely put the book down!!!

                                          

This is my 14th or 15th Picoult book. I have enjoyed 85% of all her books and I can absolutely recomend a few of them:

Sing You Home which is her latest book.
A husband, Max, and wife, Zoe, strugle to get pregnant. After a miscariage the housband decides to leav his wife. Thouh she does still want children. The book is about Zoe and her wifes strugle to get custody of the remaining embryos from the IVF of Zoes first marriage. And a newly religious Max wants the embryos to go to a family with christian values and high moral standards.
I loved this book and felt sad when it ended.... Fantastic book!!

Handle With Care
Charlottes and Seans daughter Willow is born with a very rare congenital disorder called osteogenesis imperfecra; very brittle bones. Willow suffers from breaks just by a rough caugh or a hug...
Charlottes best friend was her OB/GYN and took care of all the pre-natal care. When Willows health turns even worse and miney is needed, Charlotte and Seans sues the OB/GYN for not seeing on the ultrasound that Willow suffered from the condition she is so that th parents could have decided not to give birth to Willow....
This puts a friendship at stake, for the sake of money. It also makes Willow question if her parents wants her.
Also a fantastic book!

Please follow this link and read more about Jodi Picoults novells! http://www.jodipicoult.com/
Picoults most famous novell is "My Sisters Keeper" hich did also turn in to a movie with Cameron Diaz.

                                                 

Last week I did order the only book that I haven't read by Jodi Picoult; Second Glance. I'm not sure what it is about but I know it treats the topic of Native Maericans and their terretory. Can't wait till it arives! Thouh I do still have 1/4 left of "The Pact" and "Mercy" sits in my shelf waiting for me!!

I do not only read serious books about life and death, I do also love books with alot of humor!! So, another author of my choice is Sophie Kinsella. Who has writen the Shopaholic-series about Rebecca Bloomwood, a mad Londoner who loves shopping- beyond borders! I'm not at all a chiq-lit kind of girl but I just love Kinsellas way of making even the smartest person a total looser if she, or he, ends up in a situation she or he is not used to!! Brilliant writing!!
But my absolutely favourit book my Kinsella is  "The Undomestic Goosess".

 Samantha Sweeting is 29 years-old, very spoiled and doesn't even know how to boild an egg!! One thing leads to another and she ends up at the doorsteep of the Geigers who thisnks she's there to applay for the job as their houskeeper. Samantha is desperate for a place to saty for the neight and takes the job...only to realise that it's a huge misstake!!!
A funny book that you can't let go of! There's a laugh on every page!!

I have read barely all of Sophie Kinsellas books but while stuck in all of Jodi Picoults books KInsella has writen two new once; Mini Shopaholic and Twenties Girl. I have sent for the first one and just can't wait for it to come!!
I love books!!!

What I love most with books is that fact that you can let go of the life you are living for a while, sink into someone elses mind, problems, love affairs and dreams... You can let go of your own every day problems, pain and worries. I love when it rains outside, the wind blows and it's really coold- to cuddle up in the soffa with loads of blankets, pillows and Louis. Light candles, make some hot cocholate, cinnamonswirls and just me in the moment. I think that will be my plan for this afternoon!

But first; shower!! Then I need to go get some groceries, fin a hat/ cap as it has turned sooo cold just over the weekend and then take my lovely little Louis for a walk!! Hopefully n my new cap...!!!


Do you have a favourite author?! Favourite book?! Please let me know, I need tips as I have now read all of my favourite authors books!!

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!!