Lifslevande / Alive

...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 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!!

Ohhh, I miss England sooo much! I miss my friends, I miss the language, I miss the shopps, the arciticture, I miss the cocholate, I miss the atmosphere and yes I do even miss the food and the weather! But most of all I miss my bestest of best friends- Ruth and our mad adventures!! I love when we pack her car andr drive, almost, aimlessly into the heart of Cotswolds. I love when we go out for a meal in the evening and chatt away for endless hours. I miss our shoppingsprees, the fact that we can end eachothers sentences, that we know eachother inside out and that we can talk about anything and everything!!

I have known Ruth for almost 10 years. I think it klicked emediately. Ruth is that kind of friend you only meet once in your life and to live so far away from yur bestest friend...it kind of hurts at times. Eventhouh we live many miles apart I know that she's there for me and I hope she knows that I'm there for her! I miss Ruth and England sooo much, especially in the autumn!

Ever since I was a smal child I loved England. Even before I went there the very first time! I had a Union Jack on the wall of my childhood room. I had loads of souveniers, pounds and gouide books all over my room! My heart has always longed for the green rolling hills, for the damp weather, the lovely tea, scones and friendly people!
My home away from home is Cheltenham, a town in the heart of Cotswolds. It's a posh little town with a heart of gold, loads of different possebileties, shopping way better than London and parks that you could only dream of!
Just a few miles away is Oxford and another few miles away is London. If you go the other way you come to Birmingham, Shakespears Stratford-upon-Avon and the smal lovely willages of Cotswold.
Oh, I miss it soooo!!!

                          
                                            Autumn in  Brodway a few years ago

                            
                                     No one does flower arrangements like they do in England

I keep longing for England, for my friends and for the freedom I feel when I'm there. It feels like people ain't staring just as much at me as they do in Sweden.... In Britain they seem more used to people being different than they are in a smal country such as Sweden. 
It was way worse when I lived in Helsingborg which is a fairly large city, but when I moved to the litle town of Ängelholm it got way better! It feels like you know everyone here. They are so friendly and I get the feeling of living in England!! I live close to the town square and they have farmers markets a few times per week, just like in England. Ängelholm is famous for all it's flower arrangements, just like England! I live next to a river and the forest, which to me also feels like the life in Cotswolds. Even the weather is a tad bitt different in Ängelholm as it is sittuated just underneath a ridge which makes it a bit more rainy and brings more thunderstorms. To me living in Ängelholm is like bringing England to me! I love it here and the only place I could ever imagine moving to is England- of course! Even Louis finds Ängelholm way better than Helsingborg, where we used to live. You can see how he loves to be outdoors, how he loves to meet all his friends and how he loves to tag along when I'm of somewhere.

It's a very autumny day today! I have a huge pott of vegetable soup simmering away on my stove, it smells divine! MOnika showed me how to improve my old recepie. When I have done my dreaded dishes and had a shower I will take Louis to the forest. I love to see the leafs changing colours, the smell of earth and moss, watching Louis run around and just feel that I can unwind. Then, when we are back home I will sink down in our beloved soffa and tast the soup!

The nature means alot to me and I wuld never, ever move to a place where I didn't have close access to the nature! Louis and I, we are lucky who found the appartment we live in now!! At the front of the house we have a very greeen yard and on the backside a lovely garden!
Just outside the door is the river RönneÅ and five minutes away is the Kron Forest. If you walk through the forest, for about 15 minutes, you are down by the sea! A lovely sandy beach. What more can you wish for??!!

                              

No aqua exorcise for me today, unfortunately... My laser wound is still making life a bit difficult for me and as the water is quit warm in the hospital pool it's not at all good to have a wound that is conected to your lymphatic system... And also, my back hurts like h*ll which makes changing a million extra times a tad difficult. So cross your fingers I'll be able to go next week! I really enjoy the aqua training!!

                            Thouh, there are other things to enjoy a day like today!

It was a few days since last! It has been a bit uncomfortable since the laser treatment; swollen leg, pain, redishness and so on. I have tried to have my leg elevated as much as possible, but all of you who knows me also knows that I find it very difficult to be still for to long.
The laser treatment sems to have been a succès, so far! I have one wound that keeps anoying me by bleeding but the other 3 or 4 seems to have healed- *knock on wood*. Hopefully I'll be able to participate in tomorrows aqua exorcise!

We, Louis and I, spent Friday and Saturday at my parents; Dads and Monikas place. They are rebuilding their kitchen and I tried to help them by cheering them on, serving beer and finding lost nails. I don't know if I did much to help, but it was good fun! Dad screaming at dead things and Monika sighing at his behaviour. Dad making odd inventions to try get the hood of the kitchen fan in place.... It sure sounds like a mad house, and I can ensure you that it is!!!, but we had alot of fun! They did some work on their kitchen, we made great food, talked, walked with the dogs, laughed at the dogs and just enjoyed ourselves. Watched german TV, had a sip of wine and a piece of divine cocholate mousse cake!
Both Dad and I have gigantic sweet tooths! I have always said that we have two stomachs; one for food and one for sweet things such as cocholate and cakes!! SOme how, even if we have had a huge meal both Dad and I have room for a sweet treat!

Louis loved the cabinetts Dad and Monika had built! The cabinetts didn't have doors yet and Louis thought they were great pinsher-appratments, he moved in with blanket, bones and biscuitts!!!

                                
                                                    Louis in one of the old cabinetts!!

Louis idolizes my Dad and follows his every step! Louis loves when Dad chases him, when Dad screams and when Dad does things even a dog knows is not allowed! But if Dad does it, it sure must be okey?!!?
On Saturday morning when Dad got down to say goodmorning Louis jumped by his side and run to the sittingroom. Dad akeed "what is it Louis?" and Louis run and stod infront of the fireplace wagging his lovely little pinsher tail! "What?" said Dad and Louis jumpe up in the soffa and laid down on his sheep skin. "Do you want me to light the fire?" When Dad went to get the lighter fluid Louis ran with him; jumping and twirling around! Running infront of Dad back to the sittingroom and the fire place and jumping up in the soffa!!! Never, ever tell me that dogs can't communicate!!!
A saticfied Louis stayed in the soffa, enjoying the warmth from the fire!!

When we stod in the kitchen talking, on Friday when Louis and I had just arrived at Dads and Monikas, their dog Maxi went to is big doggy-snack-bag and picked a bag of treats. He trew it at Monikas feet and wagged his tail!! So Monika had to open the bag and treat Maxi and Louis to the treats!

As Louis has had problems with his tummy he's not allowed to eat some doggy snacks. But when Monika, or I, gave the forbiden snacks to Maxi, and something else to Louis- Maxi ran out into the gaden and gave the forbiden snacks to Louis!!! I just love our dogs! And they sure love eachother! They are up to so much mischief togther!
If you give them ecah a bone, identical, they still just want one!!! Most of the time the most disgusting looking, an smelling!

                         
                                            Monika serving the dogs!! Louis shewing!
               (Louis is wearing a sock 'cos he has a little wound on his paw that he just can't leave alone!)

Louis and I, we have really had a wounderful weekend! Louis was so tierd when we came home that he sleept for almost 16 hours on a row! He onli left his warm retreat for food, a drink of water or a walk.
Today we have nothing sheduled! I went to bed with a horrible migraine and with my luck even woke up with it. Louis and I stayie din bed till 9 am and then went for quite a long, but slow walk around the river. It was lovely 'cos it clerared my head and gave me time to think. I am pretty stressed out as soon as a new week begins... There's sooo much that needs to be done, hospital appointments and other things like that. To start of with I don't have the strenght but I need to go to all the appointments to get strenght and to keep mu body going! What I need is to slow down inside, not get worked up or stressed and give myself the rest I need! Try to accept  that there are things that I can't do, that I'm not able to cook if I've been away on a hospital appointment, that I can't clean on a day that I have been away, I can't do the grocery shopping on my laundry day even if there might be time.... I need to slow down 'cos my body just can't take it!! I need to choose, I need to plane and I need to prioritize!! I want to be around as long as possible and be as fit as possible when I am! I want to live as long as I'm alive!!!

So, threrfore today is a day when I have nothing planed more than a few phonecalls. If I feel that I'm up to it I will go the few steeps down to the Supermarket to get milk and eggs. I went grocery shopping on Saturday together with my parents. I don't have a car so I cant go to the big supermarkets outside of town and I can't buy heavy things 'cos I can't lift them. So, they helped me shopp,but sure enough did I forget somethings and milk...well, it's always out when you need it even if you have stocked up!
I'm still in my swetpants and need a shower! Louis is asleep in his huge basket and doesn't seem to think todays plan of taking it easy being a bad idea!

                              

    This week is filled with hospital appointments, so this day of rest and spoiling ourselves is much needed!

I had a YAG-laser treatment done yesterday at the University Hospital of Malmö, Skåne. I have had other laser treatments done before, but with other kinds of laser. The previous once have been lasers that have scared my skin so that the bleedings should stopp. As the skin gets scared it also gets thicker and doesn't rupture as easy. But this new version of the YAG-laser goes deeper and "pops" the veins. It really sounds like a "pop" when the vessel breaks. The blood coagulates emediately where the laser beam has been shot and the visual sign of the laser is a redish rea aroun where the laser has been preformed, a bit of brusing and a scab that should be left alone so that it doesn't start to bleed....
This laser treatment is said to be better for KT-patients as the laser beam goes deeper and as it, most of the times, does the trick. Other lasers might not close the vein of propperly but the YAG does. The scaring is also much less than with conventional laser treatments.

The treatment is very painful, but just for a second at the time. When you hear the "pop" it really, really hurts but that's just for a second and after that it's totaly painfree. The problem is just taht you have to go through this one-second-pains about a hundred times. It's a bit exhausting to feel this intence pain so many times, but soooo worth it! I feel that the pain is more intence that the other lasers I have tried but after that very painful seconds it's painfree. With my last laser treatment I got wounds that didn't heel for weeks, that was painful and very problematic.
Today, the day after my laser treatment, I'm a bit sore but the most profound problem is that my KT leg is very swollen. As the treatment "sealed of" some troublesmome veins the blood now needs to find new ways to get around. The swelling is painful and quite uncomfortable. Thouh, that's a smal price in the long run! I just need to keep my leg elevated, rest a bit more than usual and try to keep the scab of the "wound" on as long as possible.

I can really recomend this laser treatment! Keep your fingers crossed now that this treatment has been succesful! It will take a few days before we know if it's as succesful as we anticipate!

Sorry I haven't been writing in a few days! I find it very difficult to come up with interesting enough topics to write every day, and also even if I'd love to write more often- there is not enough time. But now I'm here, sat infront of the computer, Louis asleep in his basket after a quite "me-me-me" morning where he needs all my love and attention.

On the other hand, that's one of the things I love about Louis, the fact that he communicates! He whimpers alot when he wants something and wants me to understand what he wants. For example, when he wants me to lift his blanket so he can crawl underneath it and fall asleep, or when he wants fresh water, biscuitts or anything else! I just love that he communicates!!
Louis is a dog with very strong feelings- and oppinions for that matter! He just loves to tag along on adventures; by train to mums, in the forest or by car to Dads. Yesterday when I was of to aqua exorcise I had packed the very same backpack as I use when Louis and I go to Dads and Monikas. Pooooor Louis! He really thought we were of to something lovely, and then I left him home alone.... Oh my dear Louis! Thouh, we are soon going to Dads and Monikas for a sleepover and Louis finds that the best thing that can ever happen in a pinshers life!! He loves to go by dads big black car, to play in the garden with Maxi, to eat alot more than I fing okey, to sleep on the sheepskin in the soffa infront of the fire.... I know this might sound totaly odd, but Louis is and so am I ;-), but Louis loves when everyone is seated infront of the TV, not running around and just watching TV. He sleeps like a log with all his four feet up in the air!

                                              
                                                    Louis asleep in our soffa!


So, this week is filed with various activeties. I do usually not do other things during the week than go to the hospital, aqua exorcise with my physio, domestic "duties" and take care of my dear little Louis. I don't have enough energy and pain is horrible after all my other activeties. But this week, tomorrow to be exact, is my grandparents (fathernal) 60th anneversery!!! That is not bad! We are invited to go to a very nice seaside restaurant in Helsingborg for a lovely evening. My onkle and his "girlfriend" are coming all the way from Spain, my cousins from Stockholm and Omas (grandmas) sister Helga from Hamburg, Germany. The rest of us are scrambed togeher from around Helsingborg.
It's a Thursday so I don't think it will be all to late, at least Oma knows that I'm not able to be up and about for to long. I have allready had a glance at the menu and think I know what I would like to eat... I'm a lover of fine food, I think I have that after my Dad. I love to try new things and am not afraid of strang things. I do love nicely cooked dishes and lovely presentations. I do also love a fine wine, even if my KT doesn't allow me to drink more than half a glass.

Then on Friday I'm invited to a "fare well" party at my friend Mias place. She is moving to Warwick in England to do her masters and I will miss her alot! Even if we don't see eahother that often we know where we have one and another and try to get together as often as possible. My illnesses is often the thing that makes us getting together impossible.... But, on Friday she has invited me and some ither friends for clams, laughther and pure madness! It's a gang of mostly girls who have lived in The UK for long periods of time. So, English jokes and tea is something that I just know will be present on Friday! Thouh, Mia knows I wont be able to saty all night- she, just as Oma knows that KT can take more than it's fair tool on me. Damn KT! I just hate it! Well, well- the most important thing is that I can be there for a while!
 
At the end of the week Louis and I are seeing Dad and Monika! We are just going to hang around their house, eat lovely food, sit infront of the fier and just enjoy life. So that is not to much pressure on my body. Even less than being at home really ;-)

My joints are pretty bad at the moent. Especially my neck and back. So typical autumn-symptomes. That's life and I'm trying to do the best possible of the situation; try to do the things I had desided to do and first and foremost- things that I want to do!!!
It's a really crapy weather over here in the South of Sweden. We are at the moment dealing with the storm Katie that caused loads of damage in Scottland just a few days ago. Thouh, the storm isn't at all that bad now, but bad enough for Louis- hihi!!! This morning he refused to get out of bed an sleept until 9.10 am whish is somekind of world record for him!!

                                  

Hmmmm, I really don't get it! I'm trying to download my banks app to my iPhone and have done so according to iTunes. But where on earth does the apps end up in your iPhone?! Me and moderna technology, well that doesn't rime well!!
I have a friedn who works at "3" so I have texted him and hope he'll get back to me and will be able to explain what I have done, or not doen. Hihi!!! Sooo typical me!

Today Louis and I are going to mums to celebrate her birthday! She turned 56 last Wednesday but as it was midweek she decided to wait two days to celebrate. Louis knows we are going somewhere today as my backpack and a bag of gifts are packed and waiting for us to get ready to leave! Louis loves adventures, especially when we are going by train or car. The best thing that can happen in Louis'es life is when Dad picks us up in his big black car and takes us to his house. Louis just loves it and am so skitich all the way over there that he trembles like a leaf!!

Well, so mums birthday celebration today!
I still don't know what to wear. I don't like family gatherings at all so I feel that I need to dress in a way that gives me selfconfidence... I don't know how it's with you, but if I dress in clothes I really like and that makes me feel good then it kind of boosts my selfconfidence alot. That's kind of the reason I bought all new underwear before I had my big messuring-joints-and-muscles-session with my physio ;-). And the very same reason I have a lovely purple Speedo swimsuit when I go to aqua training. I knooow, I'm strange! I know it's the inside that counts, but really, how I dress is not for everyone else but for me to feel good about myself!
So, I'm thinking about wearing my orange stockings, jeans skirt, top and orange suit jacket. It might sound horrible but I love bright autumny colours!
Or, I might wear my brown Kennedy dress and black stockings....
Oh, I really don't like these family gatherings.... I feel so lonely. As if I don't fit in. Thouh, Louis is with me and he's my family!! I soooo wish Ingela, Mattias and the kids lived closer 'cos they are much like a family to me. L and L are such wounderful boys and I love the way they try to say my name or the way they think Louis is the most cuddly puppy in the world. I apprichiate the pictures Ingela send me of L and L, when they are up to something mischivious or when they just smile with that huge grin that kids do! Lovely L and L!! I miss them sooo!!!

It's so typical me to slide onto another topic when I'm writing! Sorry! I know I could correct it and move around the pices of text the way I want as this is in writing, but I like my blog to be a mirror of me. I like it to be as close to reality as possible!!

I ought to take care of our dishes now, I just hate doing the dishes!! It takes forever as I keep doing other things...
Take care you all and have a lovely Friday!!

                          
                                         The cake I made for my birthday in July!
                                                  Happy Birthday Mum!!

I woke up early this morning, I had an appiintment with my physio Anna at 8 am. Todays "exorcise" was to messure the movement in my joints and the strenght, and destruction, of my muscles. Anna is a fantastic physio, I have had 31 physios through my 29 years but Anna is one of the very best!! She really tries to understand me and my body, she treis to find ways around obstacles and she supports me. The messurements today showed that my joints has gotten much worse, and also my muscles. The only thing that has really improved was my elbows and the fact that I can stretch my arms a bit further than before. We have practised that alot at aqua so I'm pleased that it showed result!!!
Anna was very supportive about the deterioration of my muscles and jints and promissed to get a hold of my reumatologist to try get her to find a new course of treatment for mer. The major problem with a reumatic illness is that you "relaps" (hard to find a proper word for "skov" in English...) and then you trie to work to get back to where you once were, but you never end up at the step where the relaps started. It's so hard to explain but try to imagine my path of life as an alphabet where A is the step I'm at now (to make it easier). When I relaps; as you do every now and then with reumatic illnesses, you fall "down" to an F on the alpabetic scale. You work and work to try to stop the relaps, to get back to the A where you were just a few weeks ago. Yes, you get better but you only end up on a C or a D... You are still worse than when the relaps begu, but better that the worst days and weeks of it. Is it understandable?!?!
So, the problem is really that I keep getting worse and need a course of treatment to slow down the deteuration and the frequenze of the relapses. I would like to get "well", but I know I can's so what I want is to slow down the progress, slow down the speed of which my body breaks down- one step at the time. It's sad..., I really can't understand it!! It's difficult to get my head around it... I have two illnesses/ syndromes that keeps destroying my body, that keeps taking away functions of my body and that keeps making me more and more unable to do what I want. I try to take controll, try to think ahead ans really, really try not to get defeated. It's just though! It really is.
I keep repressing what has happened during prior relapses and during times of the year when the weather is cold, dry and wet. I end up supprised every single autumn when the big relapses comes, when I have to fight even more to get my ingers to cooperate, to be able to stand up for longer periods of time and I also tend to forget about the pain....
Oh lord, here we go again! But still, I love the autumn! I love the beautiful colours, the chilly mornings and the crispy weather. I love the rainy days when you can sit inside and read, drink tea and cuddle with your loved one, i.e Louis =).

Yes, Louis. His tummy is making my life difficult again! It's not easy to love someone as much as I love Louis!!
Louis seems to have no problems at all; he's as picky as ever with his food, as mad as always when the postman comes and this morning he had a lovely "cuddle-time" with my neighbours cats! Louis sat outside our door with four cats around him, wagging his tail! The cats walked around him, rubbed themselfs against him. He just sat there as the king of the hood and loved having the cats around him! I held him, just if he got naughty ideas ;-)!! But it all went well and louis loves my neighbours "daddy" cat Benjamin. My neighbours have 5 cas; mummy cat, daddy cat and three one year old "kittens". Since we moved here Louis has gotten to know all the neightbours cats as the cats are outdoors alot of the time. We run past them on our way up to our appartemnt, in the garden and in the yard. My lovely little Louis!
There's one cat "Snow white" that has given Louis a scar abow his eye...

Louis tummy, please keep your fingers crossed that Louis will bounse back as quick as possible. I don't know if it is so "bad" or just me being sooo worried all the time 'cos I love him soooo much!! I mean, anybody can hava a doddgy tummy and it can take a while before the stomach gets back to normal. As I have said before, the memory of Decembers close-to-death illness has caused me to worry alot over things that might not be so serious. Might.... I just don't want to end up loosing my Louis! An animal is so much more fragile than a human as their life expectanse is...shorter. But, that doesn't prevent one from loving them just as much as a human! I don't have any children, Louis and I live on our own- he's my everything! My days evolve around him!!! Louis is the best medication in the world- I would be much worse of if I didn't have him to keep me on the go ;-)

                     
                              
                                                                       "Hello world!!!""