Warmly welcome :)

Hi all!
My name is Isa, and this is my blog. A couple of months ago I was diagnosed with Buerger's Disease and I want to share my journey with You.

Blogging is very new to me, so please be patient - I will learn quickly :)

Hope you'll enjoy reading these "stories"!

2010/03/21

International Day against Racism

Today is the International Day against Racism. Did you know that in 1966 the UN declared March 21st to be remembered as the day against racism, and that the events in South Africa in March six years before that lead to the world wide acknowledgement towards the equality of man.

I am honored, my son took part in the Finnish Red Cross campaign and the spot is wonderful! I’ll try to add it to my blog for you to see. Unfortunately it is spoken in Finnish with no subtitles, so if you should need translation, please don’t hesitate to contact me.

For a couple of days I have taken my new medication. The only difference is that I feel constantly ill all the time, which means that I haven’t eaten real food during this time, only tea and once a day I force down a piece of bread or banana. This is said to be a normal reaction to this medication, and that these feelings should subside in two-three weeks. You know that everything is not alright when I say no to chocolate. And I just love chocolate regardless the flavor, white chocolate, dark chocolate, orange crumb chocolate or milk chocolate.

This past week has been extraordinary due to the fact that every morning I have woken before seven am. Normally I’d sleep until nine or ten, and first then get up. After three or four hours I have to take a nap, because I am so tired. I assume this also has something to do with the new medicines.

Last Friday we drove to the police station and left my application for the disabled parking permit. I had to have my picture taken, and it turned out awful! But then again, whose passport picture is one of their best pictures? Bad paid for photo indeed.

Still hoping that spring will come very soon, I want to go outside. In two or maybe three months, we can finally spend time at our summer cottage, I’m really looking forward to this. What I would give to move permanently there. My dream is to build a house on top of the hill, on one side you can see Lake Outamo and on the other side is the grand lake of Lohja. The house would be with big windows, so that the view wouldn’t be disturbed by walls. Well, maybe one day.

2010/03/16

New medication

Finally the doctor’s statement for my disabled parking permit arrived. So, this means I have to have my picture taken, which is something I dislike especially now when I have gained a lot of weight thanks to the now changed medication. Today I started with my new meds, and immediately lost my appetite. I feel nauseous all the time, and preparing food for my family was quite an ordeal.

Fortunately due to my long experience with cooking, today the food comes almost by itself so that I don’t have to stand beside the pots and pans for more than seconds at a time. Seems like we’re back to the same situation I was in last summer, when I didn’t eat anything for days. It simply was too much to ask of me to get something down my throat.

Otherwise things are nearly back to normal. My son was home for many days, he had caught a really nasty flue. The cut in my left hand is healing nicely, so I am able to write and knit again. We built, or rather assembled, a closet yesterday for the girls’ room, there is still another closet waiting for us to assemble, maybe today or tomorrow we’ll have the energy to do so.

Last night we watched the film Australia with Nicole Kidman ja Hugh Jackman. It brought tears to my eyes, especially when Nullah was taken to the boat and the look in the both of their eyes. I cried watching Sex and the City-movie as well. It was so heart breaking to watch Carrie hit Mr.Big with the flowers and Charlotte pulling her away. Charlotte’s eyes were so filled with pain that I just could not hold back the tears. But I think it is possible that movies touch you in that way. It shows that you still have big emotions after these negative happenings.

There is still as much snow as there was last week. Even today I have a longing for a trip abroad. This weekend I had nothing to do besides chores and it made me lose my nerves. I wanted to go somewhere, meet someone or just do something else than clean the house or do the laundry. Instead we went upstairs to our dungeon and turned on the Playstation and played PopIdol and won. It wasn’t that hard, maybe because I had set the level as Easy. Looks like it is too Easy, so next time I have to increase the difficulty level. It’s fun more than anything, good music and nice clothes.

After a couple of nights sleeping badly, I feel quite tired. Last night I was awake from 4 Am until 7 Am, and then finally was able to get a couple of hours of sleep again. I thought of getting up and folding the laundry, but it was too cold to do that, so I lay in bed listening to our cats’ noise inside and some weird noise outside, so distinct that even our dogs started barking.

The sun is not shining today outside, inside it is.

2010/03/11

Grand Idea

The sun is shining brightly, the birds chirp so loud that I can hear the song inside as clear as I would stand beside them. Could we now start the countdown with the snow?

Last night I cut myself with a very sharp knife right in my left hand so that the blade almost pierced the hand. I could not do any knitting afterwards, so my quilt-project is falling behind. Luckily some of my friends have start to knit some pieces themselves, this eases my chore. The idea is to knit squares of woolen garn and sow them together to form a big quilt, which is sent to the Finnish Red Cross and from there somewhere in the world for people in need. My daughter and I have knitted about 40 squares, so there’s just enough for one quilt. The goal is to make 20 quilts before the end of May. Ambitious, Yes!

When talking with my mother yesterday, I got a splendid idea – all of my experiences will be put together to publish a book. This blog is the base for this book, and I thought of translating these entries to Finnish and Swedish, so that my book can be published in three different languages instantly. The first book would be titled “Isa – the First Year with Buerger’s Disease”. Now that I wrote it down, it does sound quite lame. “In Fear of Amputation” “Fighting the Windmills” They sound a bit better, but do they tell the truth? Well, I have ample time to figure out the name.

Feels like nothing goes the way I’d like them to go. I still feel discouraged after the visit from our community’s head of the disabled and the elderly. I had thought that now I would be able to do something else than to sit around the house, but no. That would have been too easy. After a few hours of sleep, it doesn’t even feel like I want to make things happen. Instead it made me want to pack our bags and move away. Still I am stuck here inside these four walls. Looks like once again if you want something done – do it yourself.

The pain in my hand from this writing is getting worse, so I’d better stop. I am going to spend the rest of the day dreaming about utopia, where things go smoothly the way I want.

2010/03/10

Disappointment

Honestly - I'm pissed off. Furious. Angry. Sad. Overwhelmed. Irritated. In which other words could I describe how I feel right now.

Feels like I am fighting against windmills. With no success. Possibly this is due to the fact that I have not been able to take my normal pain medication and last night I slept only for four hours. In pain. When I woke up this morning, my feet hurt so bad I wasn't able to take steps right after waking up. I managed to get to the shower and sat on my chair for a long long time, and still my feet kept aching. We had a visitor this morning, and the result is that our community is not going to help me. Well, that is the negative way. To turn it around to the positive side - all I have to do is to ask for a new statement from the doctor, which states that I am not able to rise up the stairs, I use triangle-medicine and that my condition is permanent, not temporary. After this, I may leave an application for assisted taxi-rides. But, I am only allowed to travel within the neighboring communities, not for example to go and meet my parents, even though the law says that the community has to ensure that my quality of life is upheld and that I am able to meet with my family and friends for atleast 10hours every month.

I understand that it is too much to ask. But why on earth is there such a law, if no-one has to obey it? Why do I have to fight for my rights? Not to party, like the Beastie Boys :D

Tomorrow my doctor is at her office, so I can contact her once again and ask for this statement, so that I would be able to do something else than to sit at home.

But the worst part is that I had hoped that I would particitipate in some kind of activity. Like for example chairgymnastics. Or just meet with other people once a week. Or to have someone to talk to every once in a while. But no, nothing. Not even hope. Well, ofcourse I may join a group by myself. But the problem is that these other groups cost a whole lot more than the those organized by the community. And since I am not able to work, money is the obstacle.

So, in conclusion - there is no difference what you are entitled to, nothing is awarded to you free of charge.

2010/03/09

Chores

Guess who is tired, again. This seems to be a normal state for me, and I don't like it at all. Immediately after the kids had started to school and my spouse to work (in other words a bit before 10AM), I started pealing the potatoes ja vacuuming. About an hour ago, I was done.

Maybe this helps you understand how little I am able to do at once. And this is due to the fact I can't stand or walk, because my feet ache so bad.

I tried to take a nap on the bed, but all the dogs came on top of me and I had to get up. It would have been nice to relax for 15minutes, but no. Not even a minute.

Probably it would be best to try again, last night I had difficulty catching sleep - it was about 1AM I glanced at my watch for the last time.

So, this was a brief update - better little than nothing at all.

2010/03/08

Anything boys can do, girls can do better!

Happy International Womens' Day!

I am lucky to be born in Finland, here I have the possibility to be who I am. I don't have to hide my true indentity. That is mainly the reason why this day is so special around the world - so that people would recognize that women are equal. When I was a little girl, my favourite t-shirt was yellow and it said: "Anything boys can do, girls can do better!" My parents have always said that I am capable of doing anything I set my mind at. The teachers at my school made it clear to us that the world is open for us, we may achieve high goals if we want to.

But, nothing comes free of charge. There is always a hidden agenda. It is necessarily not always a bad one, but some kind of hook is at the end of each line.

Today I left a message for my physician about my pain medication. I hope she phones me back as soon as possible, I had to remove my painkillerband-aid, seems like I have grown allergic to it. Tomorro I should be wiser about this.

Still I am very tired, and getting up in the morning is difficult. Oyr dogs do the best they can to wake me up, but still it's hard. Mainly because of the pain in my legs at mornings. But also due to the fact that it feels like I haven't slept enough, even though I sleep for 9-10hours every night. It is like a circle - I am too tired to do anything, and because I don't do anything I'm tired. And with the do anything I mean excercise. Hopefully on Wednesday there will be a change in this, our community's chief of the Elderly and the Disabled is coming to meet me and then if all goes well I may participate in some kind of gymnastics, which would suit me.

Soon I will head to the childrens' school, we are scheduled to have a parent-teacher conference in the afternoon. Wishing for positive feedback.

Thank You for reading my thoughts, I really do appreciate it :)

2010/03/05

My ambitious plans for the summer

Spring! Soon, the sun is shining so bright again today that I had the urge to wash windows and begin with the spring clean. I even started, walked to our barn and found out it had snowed in the barn so much, that all the things were covered in that terrible white stuff.

My original thought was that in March I would clean up the barn and get everything ready for a garage sale which would be held during the Easter. After the stuff from the barn is sold, I would clean it up and move forward to our sauna.

First I would tear down the inner walls and the inner ceiling in the sauna before all the bugs have woken up. Then when it is warmer in May, I would redo all the walls and floors and finally decorate it to a guest house, so that our friends can stay overnight in their own house, so that our dogs (and children) do not disturb their sleep.

In the end of May 'til the beginning of June my plan is to plant flowers and to do something to our fence, so that we would not see our neighbor's house. Or rather that they would not see us.

In June, July and August we are to spend half of the summer here renovating indoors as well as outdoors, and the other half at our summer cottage doing the same thing. In August the berries and apples are ready to be picked, so then the time goes with these wonderful chores.

I know I can do all this by myself, just as soon as the snow has melted so that I can move with my walking-aid about. When it is warmer, it is more convenient to do things outdoor. I have a real plan, the only thing left to do is to execute it.

If someone who reads this feels like helping, please - feel free to help at any time!

2010/03/04

Tired, again.

Today, Thursday, a bad day indeed. Well, bad in the way I'm tired. So tired that I do not have the energy to do anything. Nothing. Nada. Zero. Ingenting. I just want for this day to go by, so that tomorrow would be better.

Last night it was a storm, once again. The snow has cut off our road and we get nowhere at the moment. Unfortunately the person who uses the plowtractor is lying in bed sick. So we are stuck. My daughter could not attend preschool, because of the ... snow.

Yesterday a good friend came over and told me what to do in order for me to receive disabled benefits. It looks like paperwork, tons of it. If I am to write the application having in mind my worst day, it would be something like this:
- wake up around 10.AM and start to get out of bed. My feet are so sore that I can take my first careful step about 20minutes later with the help of crutches.
- around 10.30 take a shower, carry the chair I need into the shower and another chair to sit on afterwards. After approximately half an hour later I'm done and with my last energy left I aim for my chair in the living room (=our bedroom nowadays) and sit there for hours, because me feet ache so much I don't want to stand up.
- in the afternoon my feet are a bit better and I start making dinner for my family. This can take up to three hours, because I have to sit down every few minutes when pealing the potatoes or similar.
- after dinner my feet are as sore as they were in the morning, so I have to sit again for hours to ease the pain and suddenly it is 22PM and I am about to fall asleep again.
The following day is similar, and the after that and probably weeks after that as well.

If I were to write this in the application, would they believe me?

I know the reason why I am so tired today. Things have piled up again and took the turn for the worse. Small things like the tv-channels not showing feel so overwhelming when you add ten other bigger troubles to it. Maybe it would be best if I just went back to bed and woke up tomorrow. Maybe then the road would be clear and our tv would be back on and all of the bills would be paid for?

So, good night. Sleep tight. Don't let the bed bugs bite.

2010/03/02

Maybe

It has been about a week since I last updated my blog, we went for a holiday so it has been quite extraordinary days, but wonderful days :) I feel so energetic when meeting up with good friends and spending time with them, and to have the opportunity to enjoy days with my parents.

We went to a Schoolmuseum on Thursday with my mothers friends. I never would have thought that sitting in school would be that nice! Our guide really knew his history and brought the stories alive. This museum is located almost in the centre, so it may be best to use the public transport to get there. We went with my mother's car, and had difficulty to find parking place when there was snow everywhere. The museum is also suited for disabled persons, in every room there are chairs. http://www.museot.fi/searchmuseums/index.php?museo_id=21144
There is no entrance fee, but you get more information if there is a guide with you.

I seem to have some problems with my medication at the moment. The painkillerbandaid is making my skin really red and it itches all the time. My other medication has made my weight come up so much that I have difficulty finding clothes to wear, and now I am awake at nights, again. Looks like my body has grown used to these pills and they have lost their efficiency. I have to contact my "pain"physician about how to proceed.

Last week my doctor phoned and my right hand has to be operated. We talked about my disabled parking permit, and she said why haven't I asked about it sooner. She promised to write me a certification that I really need this permit. My friends from Tampere told me that I am entitled to use the disabled taxi as well, if the social service agrees with my doctor that I am in need of assistance. But, knowing money is scarce, they might just say tough luck.

Finally the snow is gradually starting to melt. Atlast! Everyday big wet wipes fall down from the sky, which should increase the amount of snow, instead it decreases is. If you look outside it seems that the snowlevel has staid the same, but if you have some kind of focal point you see the real change. I'm using the bench, which we forgot outside before winter, as a comparison.

Maybe in a few months I may spend my days outside, maybe walking a bit around, maybe even doing some gardening. If I'm really lucky, we may have some friends come over. But, before this would be possible, I want to renovate teh sauna into a guesthouse. Me, by myself. Maybe.