Joy of My Life
I have had a stuborn headache for two days now and I finaly begin to feel better; lovely! I absolutely hate headacheas as it feels like there's nothing you can do about it more than take Panodol and rest, and that's not much of a comfort really. Well, better today!
Louis is on a course of not-eating-my-dog-food and that creates a bit of a problem as he has got the dog-version of IBS (Iritated Bowl Syndrome) and needs to eat every few hours not to pucke. Thouh, he's as stuborn as his Marie and keeps eating all the "trimings" on his food and not the dog-food.... Looooouuuiiisss!!
I just get worried that he'll get as ill as he was last December again. When his stomach was so bad that he passed blood and had to be hospitalised for two days for IV-fluid and medications. I know it might not happen ever again, but I'm just a very, very worried dog owner who loves her dog more than anything in this world!!
Louis is as happy as ever! Plays, jumps, loves his walks and drives me crazy! I really hope it's me, that I'm worried for no reason at all!!! Cross your fingers!!!
The most important thing is that he is actually eating something! Even if it's just biscuitts, doggy treats and bolid chicken! Ahhh, or he's a gourmet dog!!!! That's it! Maybe I shall treat him Kobe-beef tomorrow?!?
It's a good thing I love that dog more than anything! Louis is the love of my life! Did you know that Louis kennel namne is "Joy of My Life" ??!!
Do you know what Louis did the other day?! We were out walking along the river and Louis ran up to a couple who had their chinese lunch in the park. They sat on a bench and Louis sat down just infront of them and wagged his tail!! Oh my lord!! He beged for chinese food from people he had never ever seen before!
Today Louis has just been trying to make out livingroom look like a blown up Toys'R Us!!! Oh my love!
I have so many lovely anecdotes to tell you!!! But now I need to take my love for a walk and then it's time for Louis late evening snacka, for me to clean up his toy-mess in the livingroom so that we can go to bed!! I'm really tierd today! This morning I saw my nurse and after lunch I had aqua exorcise. Tomorrow the day is Louis'es and mine!! In the afternnon Mum will come visit and then Thursday, back on track with the appointments again.
Oh, I forgott!! Need to make a few hospital phonecalls tomorrow and e-mail some of my dr's. I think I need to e-mail them all, one and the same letter to put some pressure on them to help me.... My foot is really bad, my joints and the cloting... So pressure on the doctors it is!!!!
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!
Phone-less...
Oh yes I am!!! No mobile phone until tomorrow, Friday, at 5 pm. Almost feels like I'm naked, lost a dear friend or...at least my contact with the world!!! Aaaaaaaaaaaaaaaaaaaaaaaaa!!!
Well, there will be a great reward coming up! Tomorrow afternnon I will be able to use my brand new iPhone 4 and my old number!!! The sacerefice of having no phone for 24 hours is so that they can swap my old number over to the new sim-card and the new phone subscription. To keep my old no. is very important!! It's difficult to change no. 'cos it's almost like an established institute, ones phone number.
The thing is, my dear old SonyEricson is dying... Thanks to me being to violent on the buttons I guess.... Or me calling to much?! Texting to much?! Or might it be that I have dropped it to many times?!!? Geting a new one is much needed and the reason that I went with an iPhone is that it's time for me to join the 21-th century! Even 12 years olds are using smartphone nowadays and I just feel that I need to jump on the train to the future. I do also hope that a touch screen will make it easier for me to use as my hands and fingers are kind of bad due to artritis (sounds like I*m 96 years old, hihi!!).
Welcome to the future Marie!!!
I'm just worried because I'm not very good with mobile phones and understanding new technology. Thouh, I managed to figure out my computer and also managed to cure Mums computer from virus and spywaer- Please, cross your fingers that I'll get my new phone up and running as soon as possible! I just don't have the energy to spend alot of time trying to understand such things....
Lord does it feel lonely or not withouth my mobile phone!?! I often send quite alot of SMS and MMS in the evening; to friends, Mum and Dad. Pictures of my wounderful little Louis and his strang habits =)
I'm in sooooo much pain today!!! Louis and I, we are just passed out in the soffa right now. It's typical autumn pain, when the weather changes from warm and humid to cold and dry... And also the fact that my artritis has gotten worse and my KT...kind of walks down the same path as artritis. Well, could be worse!! At least I have my lovely Louis, a lovely family, true friends and...an iPhone! Hihi!!!
Louis, has had some tummy problems today so he also needs to rest. He doesn't find the idea very apealing, to rest, but he does love to sit close to me in the soffa; cuddle, eat cocholate and just be together!!! Hopefully we both feel better tomorrow 'cos we are going to Dads and Monikas.
Take care of eachother everyone! Enjoy ever single moment of life!!
New design...
....so far!
I still hope that some one would have mercy on me and help me to make my blog a bit more personal. My dream is a header with pictures, quotes and lovely writing! One day, one day! I might even be able to do it myself =) Who knows?!!?
So, I hope you will enjoy the new look and that you will kepp visiting my blog!
Now it's time for bed! I hae tried to go to bed for two hours! I did only go online to check my bank account and all of a suden I happened to end up on facebook and now...on my blog.... Marie!!! Really!!! I can only imagine how it will end up when my dear iPhone arives in the end of this week or in the beginning of next.....
Oh, I have forgotten to tell you! I have finaly taken the step to get a smartphone! If it weren't for the fact that my dear SonyEricson from the 18-th century has buttons that doesn't work anylonger, I wouldn't have taken the step... I'm not good with new technology so it wasn't my plan at all to get an iPhone. Thouh, as I had to get a new phone I thought that I'd better go for it and hope that I'll learn how it works!
I mean, for heavens sake, there are pree-school kids with smart phones! I'm 29 and really need to join the 21-th century!!!
So, keep your fingers crossd that the iPhone will be just as much of a help as I hope for it to be!
Thank you 3 for all the help, all the special offers and all the patience!!!
NOW- bed!!!
KT and Exorcise
I have just been to the Rehab centre at the local hospital for some aqua fittness training. It's a slow pace training with other patients with joint and muscle problems. The water is about 32 degrees celcius and it's sooo nice to get down in the pool and feel your body just float! It's such a relif and it's so much easier to move. The warm water helps my muscles and joints to eas up and it's easier to exorcisse and build muscles to regain some strenght. Did you know that when you are in water your body puts only 12% of your weight on your joints and skeletton?!!?
The problem with the warm water is that my KT swells and gets very tender, red and painfull. It's not ultimate but I need to do my best to help my muscles and joints too...
It feelt difficult to walk around in a swim suit today. I was, of course!!!, the only one with KT there but aos the only one with a visuable disability and malformation. To be honest, you couldn't have guessed that the others had anything going on with them. Still it felt okey to be there...., until we began doing out exorcisses and I saw how much better the others were doing. Crap! Even my artritis is bad, if you compare to others!! True, you shall not compare but...I'm human, I do compare....
Not only did people stare at my KT before we went into the pool but they did also stare at me when we did the exorcises 'cos I couldn't do them the same way as the others.
And...the physio had forgotten all about my KT and the fact that I can't bend my KT-leg at all..... So typical! That added to my wearyness and made me feel even more like an UFO...
But who cares, really?!!? I'm there for me and to make myself better!! I'm there t give myself a chans, a chanse to use my body for as long as posible! I have dereams I need to pursuit =) !!
Yes, I do care and yes it feels inside and yes, I do get sad- but to dwell around feelings like that doesn't help me in the long run. I close the door on those feelings and talk with my dear therapist about them. What on earth would I have done without her?! To live life with KT is a challenge abow others and I couldn't have done it without suport.
To be different and to look different isn't that easy. A malformation such as KT isn't the most pretty thing in the world to those who aren't used to see it!!!
I'm Marie not despite KT but thanks to KT!!! KT is a huge part of who I am, and to be honest I don't think I could imagine a life without it now... Yes, I wouldn't mind a life without all the troubles that KT bings but... it's my life and it's who I am. It's hard to explaine but one day I might be able to!
To exoricsse was lovely but I'm totaly dead right now! I'm soooo tierd! Feels like I could fall asleep any second....
It feels good to work with my body and to feel physical tierd. And, lord, am I hungry or what?!!? Even if I have had a big lunch as soon as I came home I'm still hungruy!!! My body isn't used to this kind of exorcise- I'll better feed it =) !!
Smelly Day!!!
Well, that's the least you can say about yesterday!!! It really smelled, all afternoon and there were no end to it!!! Litterally it was the most smelly day I have had so far in my life!!
My Dad and Monika had decided that it was time for us to try "surströming", in English you can translate as routen herring! It really is rotten herring! Most of the times the tincan the fish is conseiled in is boulking; almost egg shaped. The tin Dad found was nice and...had a tin-caned-shape. Even thouh, dad decided to open the can in a sink filled with water. Good choise Dad! The stench that rose from the sink was just horrible!!! It was the worst stench I have ever felt!! Even the dogs left the room to find a sanktuary in the garden!!! Loooord!!!
Monkia barely managed not to throw up!
Thouh, all three of us had decided to try this rotten Swedish delicasy, smelly fish- with all the trimmings!!! Sour cream, red onion rings, potatoes and hard bread. Dad made a lovely creation. Monika and I prepared buckets, paper towls and loads, and loads of diet coke!! We tried to be brave, and we were- we took a huge bite each on our rotten herring sandwishes and.....Dad eat and eat.... Monika and Ihad a huge bit but then just coulden' continuet!! It feelt like eating rotten puke! It was absolutely vail!! After a few bites even Dad was defeated!!! He really tried to stay strong and manly- but oooouuuuu, the routten herring took the best out of him!!
Everything went in the prepared bin, out in the green bin and Dad ran as a starving German into the kitchen, threw up the fridge door and puled out a big pack of sousages!!! Out with a frying pan and started to fry sausages for all five of us!! Yes, Dad, Monika, Me and Louis and Maxi!!!The dogs needed some kind of compensation for the hell we put them trough!
Even if it was just horrible, stinking and rotten- it was somathing we had to try! It's so typical my family to try things that people advice us not to!! Monika, who is born and raised in Germany, didn't understand why dad previously had screamed at her not to tuch the "surströming" can in the shop- now she understoud!!! Never again, never again!
Thouh, this wasn't the only thing with a very bad stench yesterday!
Louis provided us ith something ver smelly too. After taking the dogs for a walk Monika and I tried to heard the two hyper active dogs back into the garden! Louis just didn't want to go back, his plan was yet another walk... No way hosay! So, he found a little brown heap of I-really-don't-know-what-animals-feaces in the garden, to roll around in!!! Aaaaaaaaaaaaaaaaa!!!! The smell was almost as vail as the herring. Loooooooouuuuuiiiisssss!!!
When we got in Monika just handed me a towl, pH neutral Doggy shampoo and I took Louis to the shower.... He wasn't all that happy to loose his parfume that quick!!!
So, in to the shower, water, shampoo...and then dry Louis. I let him go to play with Maxi so tha I could sort out the messy bathroom by myslef. Thouh, he went right outside to roll in this feaces again!!! What the f*ck!!!! Loooouuuuiiiisssssss!!!!
Another shower!! More shampoo and a very, very tierd Marie.... After the shower Monika keept an eye on Louis. Louis was very cold after having to shower twice so I took him into my arms, in my knitted sweeter and...realised that he wasn't smell-free...... Aaaaaa!!! Louis for christs sake!!! Iwas just sooo tierd so I decided to let him smell until we got home....
We had a lovely dinner in the evening, after that Dad and Monika took us home and I think Louis knew what was awaitening him at home!! He walked, as happy as ever, into the bathroom and I lifted him into the shower. thou, he wasn't all a happy camper when I put the shampoo on his back....
I gave him a thorough bath!!! Cleaning ears, face, deep cleaning his fure and....finaly!!! Smell free dog!!!
I was just in sooo much pain and sooo tierd after this ordeal that I took a bag af cochy dots, a big glass of schweeeps and landed in my soffa! Beside my was a comatosed wet dog!!!
Today is the day after the smelly-Day! I'm just knackered and will rest all day today! I only need to do a few arrends as it is pay-day today! Pay bills..... I need to go to the pharmacy and need to get some basic things home as our fridge is eeeemmmptyyyy!!! So medications, food and....hhhmmm, thinking about treating myself to some sushi. Really, I must get a new perception of fish in my memory-bank!!! I can't let the memory of "surströming" cloud my relation with fish-food!!
Love,
Marie
The Truth About Life With Klippel Trenaunay
Went up earier than normal yesterday as I had an appointment in Helsingborg (25 min away by train). My alarm clock rang at 5.20 and...lord, that's way to early even if I went to bed earlier than normal.
I tried to sneck up, not to wake Louis up. My plan was to take a shower before Louis got up. Well, Louis woke up and sat by the door and barked at the paper-boy.... Hmmm, not the best pursuit that early in the morning. Thouh, Louis loves the sound of the TV or CD-player so I put on the TV. My little dog went to sleep again, in the soffa listening to "Turtles"..., in danish....
To be honest, it was very nice to get up that early. It was nice to take the train that everyone else takes to get to work or to their studies. It felt "normal" to be on the go in the morning, to have somewhere to go. It gave me a feeling that I would really like to try to find a place wher I could try to "work", like a working experience, for a few hours per week. I know I can't work for 40 hours per week, I know that my body couldn't manage to work or study every day. There are so many things to concider.... Such as:
- It can only be a few hours per week as KT and arthritis is quite painfull...
- My medications makes me very tierd
- I can't stand for to long, I can't sit for to long and I get alot of pain by monotonicall movments
- My arms, hands and fingers are very bad, just as my neck, back and legs. Sometimes my feet makes it hard to walk...
- My immune system is weakened, so I can't be among to much people
- I get problems with MY KT very offten, so at times I'm away from work/studies in weeks on a row...
.......... and so on and so forth....
But on the other hand
- I am very good at organising things
- I love to help people out
- I'm quit taented when it comes to politics, religion and other social sience subjects
- I have a diploma in mentoring children and young adults with disabileties
- I have alot of experience from The Swedish Committée for Afghanistan and The United Nations.
- I'm fluent in Englis, Swedish and German and do speak and understand Norwegian and Dansih almost perfect!
- I'm very dertermin, positive and purposive
I would love to guide people around in the Swedish National Health Systeme, help them to get their physicans to work together. I know how life is when you have 5-15 doctors and just as many nurses, physios, occupational therapists...and, well you name it- who doesn't have the clue what the other one is doing. I woul love to help patients with multiple illnesses or/and disabileties to understand and get the health system to work for them- and not confuse them.
Or I would love to be at the Childrens and Young Adults Rehabilitation Centre in Helsingborg trying to get use of my diploma in mentoring children and young adults with disabileties!!!
Or...why not try to get my drivers license?!?!?! That would help me out alot and make all the above things so much easier! It would give me so much more independence!! I could do most of my grocery shopping myself. I could go to my parents without them needing to drive me. I could go to IKEA all the time =)!!
Thouh, it's sooo expencive to get a drivers license in Sweden! I might be able to get some founding as I'm disabled, but I still need to pay alot. It's kind of a catch 22. If I get a drivers license it would be easier for me to study and/or work. On the other hand it's hard to afford a drivers license without a job...
What I would also like to do is to go back to the University. I used to study at the University of Lund (which is one of the two top universeties in Sweden). My major was political sience but I did also take a course in the psychology behind religion.... I'm not sure if any of these subject would be the right thing for me now. What I would like to do is to find a subject to study that would lead me to an occupation that I could really do. What that would be, I don't know! I don't want to sit there with a huge students loan just because I did study things that I did enjoy but didn't lead me to a job.... And, especially as I wont ever be able to work 100% and that makes it eaven more impossible for me to ever be able to pay that loan back....
So, I need to figure out what I want to do- and what I can do!!
Thouh, the main problem is still my health!!! Will I be able to try to study or work now?!!? If I try to work or study it would be with the help of Försäkringskassan who's in charge of my monthly disabilety allowance.
Thouh, I would need to take in consideration that I have between 4-8 hospital appointments every week, four of them things I really need to go to every single week.
The thing is that when I'm not working or studying I'm not among alot of people so I don't get all those infections that I get in a heartbeat as soon as I'm among people. I don't think about if it's possible to lay down or not, I just go and lay down on my bed....aso.
I need to concider the fact that I' in allot of pain every single day and the medications that I take to stay alive makes me very tierd. There are sooo many things to take into consideration. So, I might give myself, my doctors and other health profesionalls this autumn to find a path through this joungle called my health, life and....dreams.
Well, this is a work in itself to try to figure out the future of Marie W!!! As it is right now I'm to ill to be able to work/study but I want to work towards the goal of actually finding a way.
So now, I need to rest my sore hands, arms and fingers. It's medication time and I need to elevate my legs. These are things I don't think about to much as I have my own shedule and just "do" when I need to. Out in the "real world" it might not work as smooth as in my own little world......
Thouh, I need to get out and meet people! I'm going crazy!!!
XOXO
Pancakes
A new week, and this is the week when summer seems to end. People get back to work after their holidays, school starts and the spirit of holiday and summer seems long time gone. Not that the autumn is a bad thing, not at all, it's just that it feels sad to say goodbye to the summer and the feeling of being a bit more free. Thouh, the autumn brings a chans to get going and feel that things are happening and we are moving forward!
This morning I went to this weeks first hospital appointment, all went well and I came home pretty early. I just got a sudden urge to make pancakes. And so I did- out of six eggs!!! I can just say that I have enough pancakes to feed a small army. Thouh, I love cold pancakes, nice as a late night snack or for breakfast!
When we munched on our pancakes we watched the film "Despicable Me" (Thank you Joel for lending it to me!!!). I really liked it! It's, for those of you who don't know, an animated film about a villain who wants to steal the moon. It's a heartwarming film about how a seemingly evil person can be soft and lovabel under the surface!
Louis were druling and shivering as he sat beside me wating for his chare of pancakes!! He really, really loves pancakes- and so do i!
Tomorrow morning, Tuesday, is this weeks second hospital appointment. I'm going to see an orthopedic technichan who will take messures of my KT-leg so that I can get new supportstockings. I use SIGVARIS supportstockings every single day, from I leve bed in the morning till I go to be at night. Yes, of course I trake them ofehrn I take a shower, swim or anything els that is wet ;-).
It was quite a few years since I last messured my leg for stockings and a vascular surgeon in England told me that it should be done atleast once, or twice, per year. The technichan messures every couple of centimeters on my leg to make sure that the stocking will be compressing my vascular malformations enough to ensure that my leg doesn't swell to much. The circulation in my KT-leg is very bad and if you have bad circulation it is very easy to get ulcers. And, if you get ulcers and have bad circulation it tends to take forewer for them to heal... It's a catch 22!!
I can barely walk without my support stocking. When I wake up in the morning my leg is almost twice as big as when I wear my stocking! Standing up without the stocking makes my leg swell very fast, it gets num and you can see how my hemangiomas and malformations protrude. It's quite painful and my foot gets num. When this happens I have loads of blood pooling up in my KT-leg which makes my heart beat slower... So, it's very, very important for me to use my stockings! To have once that fits perectly and that gives the right amount of compression.
As a kid I hated my supportstockings and for many years I didn't wear them, but as an adult I couldn't live withouth them- they are my second skin!!
Louis, mum and I at a summer picknick! The legs with red shoes are Mums and the leg with the black shoe is my KT-leg with the medical supportstocking from SIGVARIS in Schwitzerland.
The stockings are pretty nice and when I'm wearing skirt or dresses it takes a whie for people to notice that I'm actually wearing one! The stocking is a part of me and to be honest I rather show my bare leg with the stocking than without it. People nnowadays are very ignorante and tends to stare alot, And KT is very different and looks very....odd. All KT:ers are different and so are their malformations. I don't have any good picyures of my KT, but when I do I'll show you how my KT looks like.
Third, and last hospital appointment for this week is to see my therapist. She has been on holiday for four weeks and it feels good to see her again! She helps me alot. Life with KT and arthritis isn't a walk in the park- I do really need her to stay sane ;-)
She helps me tackle the uncertainty that KT gives... She helps me keep my head above the water. It's quite hard to know that I have two illnesses that destroys my body... Kt in its way and arthritis in its own.
I used to be ashame to tell people that I see a therapist..., but why should I be?!!? I'm just happy to be alive and I want to live as long as I'm alive; and as long as my body is okey enought to let me do things that I do enjoy!!!
My stomach is talking gibberish and I think I ought to feed myself =)!!!
Looking out the window, watching the autumn make its entry! I like the autumn! Hot cocholate, candles and warm cuilts!! Forest walks and then cuddle in the soffa drinking tea and eating scones!!!
Take care of eachother!!!
Mantioned in Another Blog!
A dear friemd of mine mentioned me in her blog the other day! She lives in the States and is also affected by KT. She gave me the inspiration to creat my own blog.
http://ktfabulous.blogspot.com/2011/08/in-need-of-good-read-check-this-out.html
Red the post about me and my blog, or click at "home" and read more about A and her brave life with KT!
A is one of my dear KT-sisters!!
Louis Fun Loving Weekend
Louis and I have had a very nice weekend! Yesterday, Saturday, afternoon we went to see my dad and his wife Monika. Louis playd with Maxi, dads and Monikas dog, and the two dos had an overdose of biscuitts!!!
In the evening we had a lovely, huge, cheese plate with aditional lamb racks- lovely! I just love cheese and the once they had bought, oh my loooord! There must be a God! Louis was beginng for cheese for hours on end and Maxi was druling all over the floor. Thouh, the dogs only got tiny tasts.... Obviously not enough according to Louis! His philosophy is "Enough us NEVER enough!!".
Louis has had a lovely weekend, and so have I! Thouh, Louis had s much fun that he barrely sleept!
Louis and I stayed over night so yes, Louis had a chence to sleep and took it- but on the other hand it gave him the possibiletie to go crazy all over again this morning!! Oh, and yes he did!!!
It makes me so happy to see Louis happy! He's my everything and when he's happy so am I!!!
We are home now, and Louis is in a chicken and happiness indused coma! He snors and, farts, he dreams and is just happy about the lovely dog-weekend he had! He's resting and saving energy for his next adventure!!!
I have also had a lovely weekend. Monika helped my by cutting my split ends and Dad gave my black shoulder bag a new life- thank yu both sooo much! Thank you for all your help and the lovely weekend!
Thouh, we are both very tierd now and back in our soffa having a rest. For the moment the TV is our best friend; I'm watching B-movies that really shoulden't take up hours by being brodcasted. Louis on the other hand is in lala-land!
Always something going on!!!
Computer Wizz!!!
HAPPY BIRTHDAY dearest GUN, Happy BIRTHDAY to YOOOOOUUU!!!
I'm sooo ashamed 'cos I totaly forgot that it was my dear friend Guns birthday today!! I even spok to here this morning without remembering it!! Shame on you Marie!!!
This morning has been computer fixing morning! I managed to sort out one of the family computers that had a spywear and virus. The computer is at Mums and I managed to talk her through the procedure of kicking the things out of the computer, over the phone!
I did also manage to scan my computer, put viruses and spywear in to quarantine and then kick them out of my computer! And as if that was not enough- I have now anaged to get the outgoing e-mail to work on my Windows Live Messanger!!! I'm so proud of myself!!
Quite a productive morning!!!
I'm still hanging around in not so reprecentable clothes and I really ought to take a shower! It's just that I'm tooo lazy... It takes so much energy out of me to have a showe,the think is I put it up until I'm in such a hurry that the whole think just takes mor energy 'cos I'm stessed out!!
So, as soon as I've writen a bit on my blog I'll have a shower ;-)
I was thinking alot about favourite books and movies yesterday and I thought I'll make a little list of things that I like. It's always nice to hear what others likes and I hope that you might give me ideas by writing it in my comments (kommentarer).
Favourite....
-colour: green and purple
-individual on earth: Louis, of course!!!
-animal: dog and duck
-movie: "History Boys"
-TV-series: "Inspector Lewis" and "Silent witnesses"
-Actor: Clive Owen
-Actress: Amanda Burton
-book: Hardto say because I'm a book worm!!
-writer: Jodi Picoult
Things I couldn't live without.....
(to not offend anyone I wont write any human beings!!!!)
Louis
Books
Sweets and Cocholate
Fruit
Pen and paper
Pillow and blanket
Schwepes Grape
Is there anything you would like to know about me?! Anything you would like to ask?!?
I'll open a little Q and A (questions and answers) and all questions are welcome!!
IS there anything you would like to knowabout me?! My illnesses?! KT?!? My life?! Feel free to ask! I'll post the questions, anonumus!!!, with anwers on the blog!
A Tursday in the Life of Louis and Marie
Today has been a day of domestic duties. I have done some of my laundry and also tidied up our appartment. Really, it was more than I could handle in one day but it needed to be done.
Thouh, there's a lovely satisfaction in putting away the clean laundry and not feeling all the crums underneath my feet. Louis helped me; he eat biscuitts on the nrwly hoovered floors and barked at the mailman!
Now we are launging in our comfy red soffa with freshy washed blankets! When I put down newly washed blankets infront of Louis he cuddles with them, he lays on his back and twists around and he falls sleep on top of the blankets!
I went to see my reumatologist yesterday. The outcome wasn't really what I had hoped fore... She wants me to take the chemo injections every forthnight instead of every week. Then I will only be fattigue, feeling sick and having tummy problems ever second week... yeeeeyyyy!!! Noooot! What the hell! I can't say that I'm exited about the new plan, but I know that I need the treatment to be ale to stay mobile as long as possible!
I want to be able to take Louis for walks, take him on adventures and I want to be able to live when I'm alive! My life is short and I want to live it for an as long time as possible!!!
So, here we go again, chemo on Tuesday! Oh, well, as if that is not enough. In 8 weeks they will increase the dosage... Am I not the luckiest woman alive?!?!
Yes, there really are people worse off, but there are also people that are way better off!!!! And they are millions and millions!!!
Well I'm lucky... I have my lovely little Louis! We have a wounderful appartment in the city centre of Ängelholm. I have a handfull of very close friends and family. There are things to be greatful fore, thouh I just can't help to wish that I had another body....
...and maybe another brain! I have triedd to POP my e-mail to my Windows Live Messenger for one week now and somehow I can't get the outgoing mail to work! I can recieve mails, no problem- but I can't send mails.... It feels like I have tried everything possible.... I just have to let it go for today and give it a new go tomrrow. Just as I have done for a week ;-). It's just that I get soooo frustrated!!
Sometimes I wish that I were married to a computer wizzard! Or a doctor!!! That would be fabtastic! Or why not a veterinary?!!? That would be awsome!! Hmm, or a millionar!!!
It seems to be between moonsone showers now so I ought to take Louis for a short little walk before we throw ourself in the soffa again!! Tea, a pice of chocholate and some fruit is the plan!!
"On the roads to new beginnings...."
Fever and life
Watching the news..., what on earth is happening in England?! My heart is beeding!!! England is my second home and half of my heart and soul are always left behind in the United Kingdom. Oh, my beloved England!!!
To be honest, I can't get my head around why all this is happening?!!? I know a man was killed earlier this year, but was it by the Police?! Why all this ragge?! Might it be more ragge hiden underneath?! More than just the death of the young man that they say started this?!?
Louis and I have been taking it easy today. I have a fever and alot of pain in my body where I have my KT. When I get an infection my KT always gets way worse. My KT gets red and tender, warm and the hemangiomas gets hard. The cure is rest, elevate my leg (where most of my KT is), add some medications to my all ready solid amount of pills and put som hirudruid cream on my KT. Ugh, well, well- what is there to do?! Smile and be happy!
What I really don't like and can't come to terms with is the pain.... I'm always in some kind of pain even if I take a lot of painkillers- but when the pain is as bad as it has been for the past few days, the painkillers doesn't help. I keep entertainig the thought- how much pain would I be in if I didn't have the painkillers, that I do have, at hand?!!? Well, I kind of know how it feels 'cos there are some hours every day inbetween the times when I take my meds that is pretty bad... The thing with me is that I have kind of rpressed how it felt before when I didn't have the coctail of drugs that I have now.... I'm greatful for the help I get from my anasthetiologist dr Jan, he's great!!!
Since I wrote a few weeks ago I have taken a break from my chemo injections. The nausea, fattigue and constantly feeling as if I'm in a daze didn't go away. The last weeks it almost felt like the side effects got worse. My body was all worn out and it felt as if I didn't have a life. I barely remember anything from this summer exept from me sleeping, watching TV and...doing the dishes ;-). Well, really, I didn't have a life at all. I sleept for two days after the injection, were very tierd for three days after that and had problems wuth my stomach. I had one or two days per week wher eI could do things. So, I tried to do my laundry, grocery shop, see friends, go to all my dr's appointments and enjoy life- all in two days! That didn't work, at all!!
Even the days when I'm up and about I don't have the strenght and energy as a "normal" person. I can do one or two things per day. For example; if I do my laundry that's what I manage to do that day. I have o energy left to cook so laundry days are food-from-the freezer-days.
If I do the dishes I need to have a rest afterwards. When I have had a shower, I need a rest, and so on. My body doesn't really play along with me but I'm trying to get to know this body that I live in. I'm really trying to make the best out of it and my intent is to try to plan ahead and try not to let KT win over me.
So well, no injections at the moment but I'm back to see my reumatologist. I'm a bit nervous 'cos she really thinks that the meto ject (chemo) injections are great. I guess they could be but my anatomy is very different from "normal" poeple due to my KT. The injections did help. I didn't realise until I got of them.... My hands and fingers got worse first and them my ancles and neck. Even thouh, it's not worth to take the injections...
Well, I have to hear what my doctor says tomorrow......
Now, I need to e-mail my GP and tell her to prescribe more medicines. My GP is great too. Before I always had to call her practise and try to get a hold of her so she could prescribe my medications. But she gave mer her work e-mail and now it is alo easier to get a hold of her.
Then, rest again. I'm really tierd and in pain now. Louis has been a dream dog today and sleept till after 9 am and has been "taking care of" me today! Oh, I love my dog soooo much!!
Take care of you all!!!
7 Marie
To be honest, I can't get my head around why all this is happening?!!? I know a man was killed earlier this year, but was it by the Police?! Why all this ragge?! Might it be more ragge hiden underneath?! More than just the death of the young man that they say started this?!?
Louis and I have been taking it easy today. I have a fever and alot of pain in my body where I have my KT. When I get an infection my KT always gets way worse. My KT gets red and tender, warm and the hemangiomas gets hard. The cure is rest, elevate my leg (where most of my KT is), add some medications to my all ready solid amount of pills and put som hirudruid cream on my KT. Ugh, well, well- what is there to do?! Smile and be happy!
What I really don't like and can't come to terms with is the pain.... I'm always in some kind of pain even if I take a lot of painkillers- but when the pain is as bad as it has been for the past few days, the painkillers doesn't help. I keep entertainig the thought- how much pain would I be in if I didn't have the painkillers, that I do have, at hand?!!? Well, I kind of know how it feels 'cos there are some hours every day inbetween the times when I take my meds that is pretty bad... The thing with me is that I have kind of rpressed how it felt before when I didn't have the coctail of drugs that I have now.... I'm greatful for the help I get from my anasthetiologist dr Jan, he's great!!!
Since I wrote a few weeks ago I have taken a break from my chemo injections. The nausea, fattigue and constantly feeling as if I'm in a daze didn't go away. The last weeks it almost felt like the side effects got worse. My body was all worn out and it felt as if I didn't have a life. I barely remember anything from this summer exept from me sleeping, watching TV and...doing the dishes ;-). Well, really, I didn't have a life at all. I sleept for two days after the injection, were very tierd for three days after that and had problems wuth my stomach. I had one or two days per week wher eI could do things. So, I tried to do my laundry, grocery shop, see friends, go to all my dr's appointments and enjoy life- all in two days! That didn't work, at all!!
Even the days when I'm up and about I don't have the strenght and energy as a "normal" person. I can do one or two things per day. For example; if I do my laundry that's what I manage to do that day. I have o energy left to cook so laundry days are food-from-the freezer-days.
If I do the dishes I need to have a rest afterwards. When I have had a shower, I need a rest, and so on. My body doesn't really play along with me but I'm trying to get to know this body that I live in. I'm really trying to make the best out of it and my intent is to try to plan ahead and try not to let KT win over me.
So well, no injections at the moment but I'm back to see my reumatologist. I'm a bit nervous 'cos she really thinks that the meto ject (chemo) injections are great. I guess they could be but my anatomy is very different from "normal" poeple due to my KT. The injections did help. I didn't realise until I got of them.... My hands and fingers got worse first and them my ancles and neck. Even thouh, it's not worth to take the injections...
Well, I have to hear what my doctor says tomorrow......
Now, I need to e-mail my GP and tell her to prescribe more medicines. My GP is great too. Before I always had to call her practise and try to get a hold of her so she could prescribe my medications. But she gave mer her work e-mail and now it is alo easier to get a hold of her.
Then, rest again. I'm really tierd and in pain now. Louis has been a dream dog today and sleept till after 9 am and has been "taking care of" me today! Oh, I love my dog soooo much!!
Take care of you all!!!
7 Marie
Lost in Translation
Dear friends!
Long time no see!!!
I have been away from my blog for quite some time. The reason has been to determin if I'll keep on bloging or just close down my blog. The reason for me putting a password on my blog was that I got comments that were rather unkind, people not respecting the fact that I'm writing about how I feel about things, how I see things and how I View life. Not what others might think and feel, even if I of course take that into consideration!! So, to question how I feel about things is to me quite intimedating.... It hurt my feelings and gave my selfconfidence a big torn. Thouh, as it is now it it has made me stronger!!
The reason with my blog all lost its purpoce in one heartbeat and I lost the urge to write. As you all know the reason with my blog is to keep in tocuh with friends and family cross the globe, to give KT a face and to show people that even if I have alot of challenges- life is quite fantastic anyway!!! Those were my original intents!
I wont let anyone take away that from me! And, I won't let anyone take away my feelings, my thoughts and my oppinion!!!
If you, by some chanse, feel that you need to attack me and my oppinion please feel free to write a comment with your e-mail attached and I will get back to you with whys and reasons associated to the fact that you think is wrong!
There are also people who gets "lost in translation" and doesn't really understand english enough to follow my blog. No, my english ain't perfect, far from, but I have the confidence to say that I write coherent and that it's quite easy to understand what I write and my messages. Even thouh, there have been missunderstandings by people that doesn't get "the hang of it". Sometimes I might write things in German, I might get comments in German or use Swedish texts. If you don't understand that, ask rather than missunderstand if you don't understand!!
Same thing, if you have any questions write me a comment and I'll straighten out the questionmarks for you! Better than attacking and missunderstanding!
I have friends and accuintances who has got passwords on their blogs. I don't agree with that at all! I have nothing to hide, that's why I have removed my password and opend it for all to read! That is also why I haven't writen more than once or twice since I locked the blog!
Blogs with passwords often, obviously, have things to hide, people to violate or/and their own little "group of mutual admirerers".
My reason for the password, is explained and now removed. I have nothing to be aschamed of and I take responcebility for everything that I write! Yes, I do have people reading that I don't want to, but if that is the price for being open and not locking my blog- well, it may be it!
So, as for now my blog is up and running again!!
My little dream for my blog is a makeover! I would like to meka my blog more personal with a lovely header, colours that matches, pictures and all nine yards!!! I want my blog to be "me" in cyber space!
My new computer is such a wounderful aid and it makes it much easier for me to write and communicate via the internet! I want to use that, I want to write!!! I want to open up my world again and welcome you in to it!!
So much has happened since I last wrote and I will bring you all up to speed as soon as I can! I have just had my occupational therapist Carin here and now it's time to take Louis for a walk and then go buy some groceries.
All I can say is that I'm happy to be back, happy to write again and glad to see if you are still out there reading my thoughts, about my adventures and learn more about life with my lovely Louis, KT, arthritis and all other fun things that life might bring!!!
Love,
Marie
