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"!

2010/02/23

My feet are killing me!

My feet are killing me!

An expression people use much too often, especially when they don't mean it. For example - you have been shopping all day, walking around in shops and carrying bags of stuff. At the end of the day your feet are all swollen and you are hoping for a nice, relaxing moment with your feet raised up. Well, that is how I feel every day after standing for a couple of minutes or walking about 200meters. And the worst is, the pain doesn't go away, and the next bit of walk is shorter and it gets shorter all day until you simply cannot take another step without fierce pain.

Today I lit up the fireplace. The firewood is stacked beside it and I lifted a few blocks of wood and some paper to start the fire. This took about 3minutes, and halfway I felt like giving up for the time being, but once again I bit my lip and just kept on. Then I had to take ten steps to my chair, it felt like forever.

How on earth am I able to do anything anymore? Everytime I feel this stupid pain, my spirits are lowered from the low point they already were at. This coldness just makes me worse day by day, I have to get to a warmer place.

Tomorrow we head off to my parents' house, we'll stay there for many days. I have made plans for us, lets see what we'll accomplish. The main reason is that my son has been asked to audition for a leading role in a film, and that gave me an excuse to make plans around Thursday. On Wednesday we'll meet a very dear friend, and maybe (just maybe) on Friday evening, I'll go out with my friends. That is just maybe. A very big question mark. Just might be possible that I do not have the energy, but you'll never know.

Maybe this brief vacation cheers me up. I truly hope so, because I notice myself that I have changed, for the worse. Previously I have been a very difficult person to my nearest, and now it's ten time more awful. Honestly, if I had to choose, I wouldn't live with myself. But I don't, so I have to and I do. And once again, I thank my wife for her long temper with me. She deserves something better, but still she is with me.

When we start, I'll take my computer with me, so let's see how often updates will appear!

2010/02/21

The day after the storm

The day after the storm, a real storm. And I'm talking about the kind of storm which goes on outside, the weather. It's terrible, awful, cold, freezing, filled with snow, ice cold. I truly dislike this kind of winter.

During last night the wind together with the falling snow has filled every last bit of our paths made from the door onwards. When you look from the window, it seems like no-one has been walking in the snow for quite some time. Horrible! Our small dogs have trouble making their way on our yard, and you couldn't even think about taking a stroll in the forest. You would have to have some kind of survival kit with you in order to proceed. It has been many years since last it has been this much snow during the winter. Can't say I wait for the spring, what happens when it gets a bit warmer? The snow begin to melt, and every place is filled with puddles, mud and dirty dogs, who jump directly on the bed. That means we have to wash the dogs frequently, and with my condition it isn't a simple procedure.

For the past couple of nights, I've slept very poorly. I wake up again every few hours, and the bed is getting more and more uncomfortable with each passing night. Thanks to the ... Olympics, I had to sleep in my daughter's bed for one night, because the ice hockey game started at 7 AM, and the noiselevel during the games is something else than quiet. The only thing we get to watch from tv is skiing, skijumping, half-pipe, ice hockey etc. I really do not care about sports. Not the very least. Not even a bit. Wuhuu, Finland got a medal. I am not intrested about why the finnish skiers have to discontinue their race. It would be the same for me if there would be no Finnish Olympics team, the money the government spend with these athletes would be better spent with for example hiring teachers to schools or paying for nurses salaries. If there are 20 athletes in this group, you could hire 40 helping hands to hospitals or nursing homes. But it is much greater to have an athlete compete with others than to take care of the elderly, children or sick people. That's money well spent!

My negativity is high today, due to the fact I'm tired, every place is aching again and I hate this winter. I want to go someplace sunny, but this is not a possibility. Not even a remote chance. Maybe it would be best for me to go back to bed and hope for a better day tomorrow.

2010/02/19

Caribbean dream

Thought today would be a good day to update my blog. This week has been so filled with various activities, that all my energy has gone with other stuff.

We went to a birthday party on Wednesday, Finlands first Brasilianterrier Chiquita do Taboao had her 14th Birthday. When we entered the room, she came and greeted us warmly. As she did to everyone else as well. She certainly could make her guests feel welcome! I had baked cakes to this party, and was very pleased when the cakes were almost eaten up.

It still is very very cold, again. It's snowing, again. For the first time in my life, I want to go south for a while. I want to be in the sun for a week. And then the minute I arrive to a place the sun shines, I have to go the shade :D

Maybe it's better not to take a vacation under the sun, this coldness would probably feel much worse afterwards. Or then just the opposite. Maybe changing the area could make one tolerate this weather better?

I could very well picture myself on a beach somewhere in the Caribbean, the sun is shining from a clear sky. The water is deep blue, and the waves wash gently on a white shore. Behind me is a person playing the steel drum, people dancing around and singing along. There I am, underneath a palm tree, a cool soda bottle waiting to refresh me. Wishful thinking, I know.

To come back to reality, I've often thought about starting for a vacation. But, how would I be able to walk to the plane at the airport, if I can't even walk to the car? I would have to reserve atleast 3hours to get there. Then again, if I would a wheelchair, that time wouldn't be needed, but would I be able to get from place to place with it? On location it probably would be next to impossible, there are always staircases and other obstacles in the way. If only people would stop and think from a disabled persons objective and recognize the flaws in their surroundings. That would be called equality, unfortunately utopia.

Next week the kids are on holiday, and we'll start to Helsinki by the latest on Thursday morning. Hopefully it wouldn't be this cold, so that they could ski outside alot! Or just play in the snow, or build a snowman or anything as long as the activity is outside.

On Sunday, if it's not as cold as today, we'll take part in a skiing contest nearby. Let's see how things turn out.

2010/02/16

Good news

Facebook is amazing - yesterday a very dear friend from my childhood was found! Or she found me, to say it correctly. We continued where we left for about 20years ago?

We had summer cottages next to each other, so every day during the summer we'd play together. One day I remember especially well - I had been to Helsinki for the day, and I was to come to home with a bus, and she'd come to meet me at the busstop. I was late for the bus, and so I had to take the following one. In those days, there were ne mobilephones so I couldn't inform her that I was late. When I arrived an hour later, there she was standing at the busstop, waiting for me. It was pouring and she had no umbrella, but she stood there, waiting. That is what I call a friend!

The medication I've had for two months is working now. My pain has eased, and now I hope that it would start to affect positively to my walking, in other words I hope that I could walk without pain longer. Next week we'll be in Helsinki for atleast a day, I want to meet up with my friends, but how can I do that if I can't walk. Well, I have to take my walking aid with me.

It feels so humiliating having to walk around with that walking aid. I feel so old and disable. But, once the pain begins I feel very lucky to have somewhere to sit and wait 'til the pain eases up.

When I've used to aid in shops for example, people first stare at me and then it seems they start to pity me. Now I know for a fact, how it feels to be stared at. I should carry a billboard on me, which states: I have Buerger's Disease. It is a rare bloodvessels disease, which cannot be treated. Please, do not smoke if you want to stay healthy. Would that stop them from staring or just make it worse?

Tomorrow is a very special day. Finlands first Terrier Brasileiro or Fox Paulistinha, celebrates her 17th birthday. I was honored to be asked to bake a few cakes to the party :)

The week has started with good news, hopefully it continues good as well!

2010/02/12

Hyvää Ystävänpäivää! Happy Valentines' Day!

Home alone... almost.

It has been over a week now since I last used my crutches. It doesn't mean it wouldn't hurt, but I do not need them to be able to walk, and we have chairs all over downstairs, so that I can sit down when I can't walk or stand anymore.

My appetite is back as well. I've eaten real food twice already this week, and breakfast almost every morning. That's something worth mentioning, normally I'm not hungry in the morning and I'm used to eat first when the kids come from school.

The sun is shining today and I'd love to go outside for awhile. Maybe I'll start to tidy up our terrace, it's odd how in the winter things just multiply themselves when there's no-one to move them to the correct place. Just the same as the clothes seem to diminish in size during the winter.

Looking forward to the summer, just can't wait to be at our summer cottage. There we can swim and enjoy the warm days outside. Some work is also on our schedule, the forest needs some attention as well. Well, alot of work has to be done here aswell. But if I could choose, I'd be at the cottage the whole time we have company from our neighbours. Unless we can block the view in some way. Soon the gardening programs are to be shown on tv, maybe we'll receive some kind of inspiration how to be able to do this.

Sunday is Valentines' Day. I sent a message to my wife on Facebook <3
I have been blessed to have such a wonderful and loving spouse. We have been married for about five years now, and our love just grows stronger and deeper day by day. And we truly have been through some tough times as well as the good times.

We were introduced through a mutual friend, and our first date was something you wouldn't forget easily. It was clear from the beginning that we are meant for each other. Would you belive it, we got married only 9 months after our first date!

In Finland, we don't celebrate Valentines' Day the same way it's celebrated in the States. Here we call it Ystävänpäivä (Friends' Day) and send cards and salutations to friends.

So Hyvää Ystävänpäivää! Happy Valentines' Day!

2010/02/09

Bon Jovi

So... today when I opened my email, there was a mail from Bon Jovi :) The same mail as everyone in the Bon Jovi-fan club, but anyway - three nights in London, two concerts at o2, tea and questions with Jon Bon Jovi - all this for a small price of 2095$
What I would do to be able to take part in this once in a lifetime opportunity, but could this be real? No, money is always the issue. If we have just enough money to pay the bills and get food on the table, there is no possibility for me to see the person, who has been my idol since 1985, 25years!

When I was a teenager, I dreamt about going to a Bon Jovi-concert and that Jon would just pick someone from the audience (and it would be me) to sing a duet (Never Say Goodbye or Silent Night) with him on the stage. I'd sing so beautifully that after the concert he'd sign me up to make a demo. The demo would be a success, and I'd make a record and tour the world with Bon Jovi as their opening act. But one thing differs me from most of the fans, I never even once dreamed about being Mrs.Bongiovi.

I've gone through a lot of feelings when listening to BonJovi. After the concert in Helsinki in 2008, it felt like it was the last time they would see them perform live, and the following day I just cried and cried.

Songs like Woman in Love, Love for Sale or Bad Medicine bring a smile to my face. Listening to the album New Jersey makes me rememeber the time I was dealing out newspapers, taking the elevator to the top floor, running down the stairs whilst listening to BonJovi with my Sony Walkman :) If you ran too fast, the cassette would start to jump, it was a result of trial and error 'til you found the perfect pace and could listen without interruptions.

When we got married, I thought of singing Without Love for my wife. The duet with LeAnn Rimes left me with goose bumps. I played this song atleast ten times in a row and tears just ran down my face.


It might be hard to be lovers
But it's harder to be friends
Baby, pull down the covers
It's time you let me in
Maybe light a couple candles
I'll just go ahead and lock the door
If you just talk to me baby
Till we ain't strangers anymore

Lay your head on my pillow
I sit beside you on the bed
Don't you think its time we say
Some things we haven't said
It ain't too late to get back to that place
Back to where, we thought it was before
Why don't you look at me
Till we ain't strangers anymore

Sometimes it's hard to love me
Sometimes it's hard to love you too
I know it's hard believing
That love can pull us through
It would be so easy
To live your life

With one foot out the door
Just hold me baby
Till we ain't strangers anymore

It's hard to find forgiveness
When we just turn out the light
It's hard to say you're sorry
When you can't tell wrong from right
It would be so easy
To spend your whole damn life
Just keeping score
So let's get down to it baby
There ain't no need to lie

Tell me who you think you see
When you look into my eyes
Lets put our two hearts back together
And we'll leave the broken pieces on the floor
Make love with me baby
Till we ain't strangers anymore



I have two equal goals
1. meet Jon Bon Jovi and discuss with him civilized
2. be a guest on The Ellen Show and talk with Ellen DeGeneres about Buergers and help to raise awareness to Buergers

I say these targets aloud, maybe now they will be reality within this year?

2010/02/08

Something to look forward to

Monday morning, I slept until 11. In a way that's good, all of my debts are paid for this way. But the day just seems to be so short.

This weekend I didn't use my crutches a single time! I bit my lip and just kept walking, sat down and rested for a while. Some progress has been done indeed. My energylevel is still very very low, and my mood is somewhat sad.

We went to a fleamarket on Saturday, it was wonderful to see some people and to go outside these four walls. My oldest daughter helped me with my walking aid, she carried them up and down the stairs. A pair of skates, couple of shirts, pair of jeans, Transformers-DVD, a skirt and a PartyLite-candle was bought. Our birthday girl found a Barbie and a pink castle and purchased them as a present, she received mail from her Godparents with some cash in order for her to buy something for herself.

This week is somewhat special. Tomorrow we'll have a Winterfest at school, there'll be program, and a sleighride! At the end of this week my son will take part in the filming of a "commercial" or a spot, depending on the definition. And then on Saturday we'll take part in a meeting, it'll be intresting how things turn out.

So something to look forward to this week :)

2010/02/04

Tired, so very tired

Thursday should be full of hope, but I'm so tired, I can't find positive in this day. Well okay, outside isn't freezing anymore and it's not snowing but I really don't have the energy to think about things I'm not able to enjoy over.

She's like the wind from Dirty Dancing is playing on my computer, brings back good memories from the time I was totally unaware the cruel world and was sheltered by my parents, sister, teachers and friends. There were no cares in the world, maybe the one thing which most made me anxious was what to wear so that someone I had a crush on would notice me. Other than that I didn't have to worry about anything. I had it well. A good home, wonderful family and friends, strict but caring teachers. Even though, now when I look back to my school years, I had only one friend - until she changed schools in the fourth grade. Ofcourse I had friends, but not friends who would be very close.

Still today I remember the phone call, she didn't come to school the first day of school after the Christmas holiday. I thought she was ill, and wrote all the homework down very careful, so that she would be able to do them at home. After school she phoned me, and immediately I started to tell her the homework and she interrupted me and told that she had started at another school. Did I cry on the phone, that I don't remember, but my heart broke. Since then, I never found a similar BFF.

Still hope to go on a holiday, still I'm fed up with these walls.

Yesterday I was able to wash the dishes without having to sit down in between. But, during the evening, my feet were aching regardless the pain medication. So the question is - if this new medication allows me to do things without pain but the pain is double afterwards, which is better?

Maybe tomorrow is a better day.

2010/02/02

Birthday again

Today, my princess has her 7th Birthday. We celebrated already on Sunday, ate with no haste and had dessert as well, yummy :)

It's snowing, again. Last night it snowed about 10cm atleast, and once again the road had to be plowed. My spouse had to rearrange her work, because the plowtractor couldn't come earlier. Our road is supposedly last on the priority list, because we're the only occupants here within 1km radius. That's the price to pay for living in the peace and quiet of the countryside.

I would so much want to go for a holiday with my family. Extended family. 9 persons. But... who will look after our dogs, cats and house. And what about my parent's dog and house. Not to mention the money needed. But I'm so fed up with these walls. Outside is so much snow I can't move at all, and it's so cold as well that I have to stay inside all time. All the time.

People who are healthy can not understand how it feels to be stuck inside. If we would live in the city, maybe I would be able to move around by myself, but during the winter here - no chance. Our car is parked right outside the outer door, but getting there is quite a challenge you don't want to make the effort unless it's a must. I hate this! I just have to accept the fact there is no holiday for me.

Today my goal is to take a few pictures and post them here. Let's see how things go.