Thursday, March 31, 2011

0 Insane...

This is insane. I am terrified of heights. And I would never be able to sent my husband of to work if he had chosen this profession.. But who in their right mind chose this for a living???

0 OMG.....

School is never easy, especially when you have lost you're place, and have to apply again.
Yesterday I sent in the blue sheet with my diploma from high school and medical certificate that proves that I have been sick. The blue sheet need to be sent to the university of Oslo.
I was very happy that I finally got that out of the way,
But do you think anything comes easy for me?
No, today I found out I had to send a yellow sheet with my high school diploma to "samordna opptak". The are they who take care of the coordinated admissions to universities and Colleges in Norway.
So I had to get dressed within two minutes and out the door, because I needed a correct copy of my high school diploma, and get that sent from a post office that gives the stamp, so they didn't think I sent it tomorrow.
One draining day, that wasn't good to begin with. The pain school was very hard mentally.
And one day after, I cant remember what I learned. But I am going over my notes tomorrow
Good night :)

Wednesday, March 30, 2011

2 Pain school Today

This day has been full of impressions, and I have written down 8 A4 page with notes from todays class.
What was more troubling to me, was that I was the only one who did.
The others said that they also had problems with concentration and easily forget. So why didn't they take notes?
I can remember a few lines from the lecture today.
But I will give more info tomorrow. Now of to bed.. very tired from all the Impression from a interesting day!

Monday, March 28, 2011

2 Pain school

The pain school is coming up, Its actually on Wednesday and I am hoping that I can last for 4 hours.
Its a long time when you are as unstable as me.
But the people who are having it know me, so they will help if something happens.
What hospital doesn't have a bed?
The only thing I have to remember is  a pencil and paper, otherwise I wont remember anything from the pain school, and isn't that the hole point?
Maybe I should send my boyfriend in stead?

Sunday, March 27, 2011

3 My Doctor

I am a little sad because my doctor at the National Hospital who is a specialist in esophagus spasms has retired.
He did have a doctor underneath him who is the doctor who has administered my botox injections.
But I really don't want to start with a new doctor, and use another 2 years for he to get to know me.
And you really don't know how he is going to react with me knowing so much about my disease.
Its not all doctors who like that the patient know just as much as they do.
And I don't like changes that much, I like to know what I have to deal with,otherwise I get very nervous.
On the other hand maybe a new doctor with new eyes, can come up with something clever.

Thursday, March 24, 2011

4 My own Tens

Today I got a new TENS device, that is mine :) Very happy about that. I do have to pay for my own pads, but that is 7$ a month. I can live with that.

What was more unsettling was that I was at the National Hospital for my check-up. They said I had to go to Ullevål to get the Tens. But when I got there they said that a new regulation from 01-2011, did that I had to pick the Tens up at Buskerud regional hospital because I was part of Vestre Viken and not Oslo. Norwegian bureaucracy my ass.
So then we finally made it to aids center and the first the woman said is: I don't know if we have anymore Tens, because we have ordered several that hasn't arrived yet.. Are you kidding me?
She went into another room, and when she came back she had a Tens devise in her hand.. johooo...
I got a Tens after some serious driving around half the east cost.

Tuesday, March 22, 2011

0 Pain-School

I got a letter today, and I am going to the Pain-School next Wednesday.
I hope I pick up a thing or two about how to live with a chronicle illness.
I am glad that this is happening very fast, I wonder what I am going to do the next few months?
Just lean back and be sickerly sick?

Monday, March 21, 2011

0 Keeping my Psyche

Its nice to have my psychiatric nurse once a week. I get to talk about my problems to one who doesn't have an emotional attachment to me.
There are things that you don't want to talk to family, friends or boyfriend.
Its not easy to get safely through the maze thats Norway's health care system. And Ellen helps me a lot.

She is also there to help me come to terms with what I have been trough, and to help me realize what my future might be.
The one thing that is not so good is that you have to know that this service exists, and sought it out. It should be something that was offered to everyone who will be or has been sick for a long time, and gone trough life changing surgeries, and need help with out their new life!

Of course Ellen asked a lot of questions the first couple of times, because she didn't know anything about esophagus spasms, but she was refreshingly honest about it, and didn't try to seem like she knew more than she did.

Sunday, March 20, 2011

3 Alone

When you are sick the hardest part is loneliness.You think that no one understands and that you basically are left alone to die like a sick animal. But then you hear that there is a place you can turn to for help and guidance.

And when you reach out to this organization for help, because their motto is: We are here for you. And all you get is a small e-mail with the basic of esophageal spasms.
Nothing like: we will help you, and we will have a meeting for people in you're situation. Now you don't have to be scared anymore because we are here for you! They do cover digestive disses, but they're main focus in Crohn's  and Ulcerative colitis.What about the rest of us? We need help too!
Now I will have to figure out everything on my own. And thats not easy when you have 6 ½ bad days.

Saturday, March 19, 2011


Life should be that when you are coming home from work, and made dinner for the kids and gotten them to bed, then cuddle up in the sofa with a great book.
But when you cant remember what you had for dinner yesterday, how can you enjoy the simple things like the perfect good night kiss? Or the gentle love stokes from you're man? And the way he looks at you, his perfect eyes that can see inside you're soul.

Life should be about Happiness and possibilities, and not pain and perseverance!
Life should be about love, commitment and family, not about struggle and isolation!
Life should be about making memories and and making babies, and not about loneliness, and fighting to keep the passion alive!
Life should be a struggle, but a wonderful journey you take with the people you love!
And the people you love, that is you're home !

Wednesday, March 16, 2011

0 Hope

What else can a sick person have then hope? Why else fight,if not for something better?
I don't feel very hopeful, so one of my friends have taken it for my, for safekeeping.
Ill get it back when I am ready. I want to belive that this makes me stronger blah blah blah...
But is that what life's is?
One big fight? Why fight if it will never get better?
Is it because we are more scared of what is beyond, than a shitty life on earth? If death is Heaven, Nirvana, Valhalla, isn't that much better than a life in pain?

Tuesday, March 15, 2011

2 My friend

I have lost a good friend, sometimes it felt like it was my best friend. Specially in periods where I was isolated. This friend helpt me dream, be realistic, look ahead, see what food i could eat, exercise, health issues and more.
But now I have to take this friend and put it back on the shelf. I have realized that after reading the same Yoga book 3 times, that I still don't remember anything, that books are a friend of the past.

And I miss my friends, I really need to fly away to another place where I can be someone else,still me, just better. A place where I can do yoga,have a good health and maybe a few superpowers!
As a little girl I never in my wildest dreams thought that life would be like this! I thought I could be anything, do everything, and look dashing.
I actually thought good sent music down from heaven, the same way baby's came with the stork.
My books have been with me from I was a baby, and I don't want to part with them after 30 years of close friendship. But I cant read the same book 10 times, just to remember that the title of the book is Yoga!

Monday, March 14, 2011

0 Bite me own ass...

After a weekend with walks, coffee date, brunch and birthday, I am now paying for it. big times.
I have been hooked up to the tens for 24 hours now, and several ketogan later, I am still in horrible shape.
I do forget sometimes that I am sick. I don't forget it, I try to deny that this is happening to me.
Nobody things that what we read in the papers can happen to you. You feel with those people, and close the papers. Out of sight, out of mind. And you only starts to think about it when you are into you're knees in problems. And then you don't have the strength to help any one else.
I just have to bow to those people who helps others, just because it is their nature, and heart to help!

«You shall never bother others, You shall be both fair and kind. And whatever else you do, I shall not mind.» The Cardamon law

Sunday, March 13, 2011

2 Ketogan®

Ketogan® has the active ingredient ketobemidone 10/25 mg. Mine is 10 mg. It is a opioid analgesic.
Ketogan® affects respiration less than morphine, it also has some NMDA-antagonist properties.
Ketobemidone comes also with a spasmolytic, that can improve the analgesia.
You should not use Ketogan if you are hypersensitive to ketobemidone,hydrochloride, or some of the other ingredients in Ketogan. You shouldn't take it if you have severe breathing difficulties. Ketogan is addictive .

I use Ketogan® when I have breakthrough pain as a result of esophagus spasms. I don't have many options when it comes to pain killers, because I cant swallow pills. Ketogan® is a good alternative because they come as a suppository. It does say in the leaflet that a possible side effect is constipation, but in my case it is the opposite. I have to be close to a toilet. I have to go to the toilet 10-30 min after I have taken Ketogan.
It is very exhausting that I have to organize so excessively, because these suppositories  have such a laxative effect. Remember a large package of disposable gloves, I have some in every purse, bag, and in all our rooms.

The good thing is that suppositories helps within 20 minutes, while pills uses about 40 minutes.
And anyone who has been in pain knows that minutes feels like years. And when you can cut the waiting time is half it is the difference between giving up, or jumping out the window because you cant handle the extreme pain.

Only when the positive sides of the medication ways up the negative side effects like addiction, should you take the drug. And never for the euphoria the drug gives when you take it for recreational use!

Saturday, March 12, 2011

4 I walked today

I actually managed to take a walk today ☺
And I feel like I am taking this pain school already. I am learning how to deal with esophagus spasms.
I walked for a couple of kilometer, and came to the nearby mall, when my spasms occurred.
I had of course forgotten water at home, but this mall has free cold water from dispensers, so I ran inside and tried the 1 home remedy: Cold water, and a lot of it!
It didn't work, so I ran into a toilet a took ketogan suppository. The only problem is that this pill has a very laxative effect. So I sat there outside the toilets on a bench and tried to keep it in for 20 min until the pills had tenderized my bowel, and entire intestines poured out in 3 seconds.
Know I was ready to walk home, and oh my how it was beautiful:

It can be seen as an extreme sport taking Ketogan, But hey, what can you do? I enjoyed the view, and realized that I am learning more everyday, and maybe my doctor was right that I can be better in a few years. The more I trial by error, the more I learn ways to deal with this disease, and maybe one day I will get a little more dignity into my life!

0 Saturday

Today is a beautiful day outside. I don't have the strength to walk very far, but I think I am going to take a little peak outside.
I do say that to myself very often. Today I am going to do sit-ups, and the days I do try, I do 2 and then my lung scar starts to hurt.
The days I do walk 3 km I am sore in my legs for 3 days. I do know that I need to be active, but its not the easiest thing to do when you're body doesn't want to cooperate.
Every time I am getting ready to do my exercises or to take a walk, I get esophagus spasms. I hope I dont get any more today!

Friday, March 11, 2011

0 Tens Volume on the way

I am sitting in the cough, mark I am sitting, not lying☺!
I have to sit or else the patches will loosen and I get electrocuted.
Not fun, but I get the pleasure of knowing that I am still alive.
Tens is a really strange thing, It feels like this tingling sensation when you're foot has fallen a sleep! Except it is in my chest.
I cant say after two days that this works, and I have been through the park a few times already. So to belive that this will save me, would be naive of me.
But if it will help me just a few %, will be good enough for me. And if it will work great, than I will take of my headband and eat it ☺

Thursday, March 10, 2011

3 Me

I have always been a person who talks a lot, and a very happy, smiling person. When I came into a group of people I would break the ice within 10 seconds.
I said last year that I have changed, but every one around me said that it would go over when I got back to my normal life, and I got some distance to everything.
But time has come, and gone again, and I am still not "me"! I am so introverted. If someone said something that I knew wasn't true, I would always say something, but I don't care anymore.
I long to be the person I loved, that cared for others, and always be there for the people I love.And still be a good student, girlfriend, sister and daughter.
And that it is scary, that I never will be "me" again. I need her to live the life I dream of!

Wednesday, March 9, 2011

2 Tens

Today I finally got my Transcutaneous electrical nerve stimulation, or tens as the doctor calls it.
I am very anxious to see if this will work better this year. I hope this will be better than the last few years!
This is an extraordinary piece of equipment. It actually take away angina attacks within 3 min. It also work on menstrual pains, and it is without side effects.

I am going to try this over 14 days, and if it works I can get a unit for free. They can also operate in a thin tread that you can use a mobile devise to regulate regulate the milliamperes that goes into the tens.
I do know it is a long shot that this will work, but I am trying this and hoping that it will work a few %!

Monday, March 7, 2011

4 Work???

I have been thinking about my future the last couple of days, and today I had a session with my psychologist.
And she thinks that school is good, as long as I don't feeling guilty every time I cant go.
But when you are as dedicated to what I do, its not easy to not feel guilty.
Every-time I reed I forget everything, so school feels really hard. On the other hand it's nice to get out a couple of days a week. When I have a good week that is!
But she as many others don't really know how I am going be able to work. I am to unstable.
What kind of employer would hire me? I am not sure I would hire me!
In Norway we have this "open sick leave ", and that will give the person help to work the amount that they can, instead of being on sick leave or disabled!
But I don't know. I can work 2 days one week, 5 days the next, and 0 the third week.
Is there any kind of job that can work with so unstable numbers? I would love to get some suggestions, because I am at my end, and could use some help!

Sunday, March 6, 2011

7 Be the best...?

Today I have lived through my television, and felt how it is to be a part of a nation.
Us Norwegians are a weird people to everybody else, except our selfs. In our country it is normal to spend a weekend in the mountain just to see a cross country ski race. Everybody have cow bells to make a lot of noise. And we are so confident that we will  sing "we are the winners" before the race.
That is because the 35 times the ski WC has been arranged we have been best nation 22 times.

We are not a nation who likes to lose, especially in winter sports. We are very proud in that way.
After all we were born with skies on our feet.
And even though I am sick, today I was skiing with Northug, and it felt like I was flying up the hills in my couch together with Gjerdalen.
He haven't been on the podium for over 2 years, and today he showed that if you fight enough you can get you're dream back. So maybe I will get mine in a few years time, if I fight and don't give up!
Besides dreams come through if you climb a few mountains! At least if you try, and don't give up, you have a chance! And isn't that all we want? A chance to be the best we can be? Best skier, health, mother, daughter, sister,friend, and  best wife/husband?

Saturday, March 5, 2011

12 Cant breath..

Today is the day that I have realized that I have to live with esophagus spasms, and probably for the rest of my life.
And I cant breath. I never thought that I would be this scared, and this heartbroken.
I never thought it would last, I thought the doctors would come up with something amazing, like they always do in a Hollywood movie. Its insane, crazy, and the patient is most likely going to die, but the patient never do. In real life they never do come up with anything like that!
My life has been damage, and maybe lost, just because doctors did me wrong.
And when they realized it they tried to blame each other, instead of helping me.
When a person wants to be a doctor, is that to save life's, or to save them selfs?

Friday, March 4, 2011

0 Who am I?

Today is yet another couch day. I know, I have a lot of them, but that is the reality with a chronic disease.
The good days come with the bad. But if I could foresee the bad days it would be easier.
If I was active today, then I would have a couch day tomorrow. But it never is. Yes I do know if I go to a birthday party that I will have to rest the next day, but that is more because I don't have that much energy.

I have always been this energetic, happy talkative person, but I guess that is my personality of the past.
My new persona is to much linked up to me being chronic sick. I lie here dreaming about being who I used to be, I liked her very much, and I hope she will find her way home back to me!

Thursday, March 3, 2011

7 Multi use...

I bought this LUNS writing/magnetic board a month ago. I had done a lot of research, but I couldn't really find anyone that I liked. But the Luns on Ikea was everything I wanted. It was magnetic and write able. And the price $14.99. I did find one that could only be written on, and it retailed for $53.54!

Instead of keys I hang my Shoehorn on the hook for easy access.

But I didn't like the color, so I painted it white. Then I painted the hooks underneath brown. The final thing I wanted was somewhere to hang cards or pictures of the month. I wanted to hang up pictures of those who have birthday so I wont forget. Like I have told before, I forget everything, so this board is going to jog my memory.
After I had painted it I screwed two screws on each side of the frame, then painted the screws and wrapped a steel wire on the screws and then I had a place to hang my pictures.

I am not done. When you have a magnetic board you need magnets. And I didn't want boring ones. So I made them myself. I used silk-flowers,steel wire,quick glue,beads,ribbons, stickers,crochet flower, decoupage stickers,magnetic sheets and borders. Everything can be bought at Panduro Hobby, except the silk flowers witch was bought in a home decoration store. It is suppose to be used to decorate tables!

This blue silk beaded rose magnet

Sticker magnets and crochet flower beaded magnet

Decoupage sticker magnet with borders in the bottom

Decoupage sticker magnet with borders in the bottom

I love Vebjørn Sand and Marianne Aulies paintings. They have made more affordable paintings that the everyday man can buy. But I didn't want to pay 200$. So when the sale brochure from Bohus came in the mail, I cut out the pictures and glued them on a magnetic sheet.

Vebjørn Sand and Marianne Aulie

I like being creative. If I cant use my body I want to use my brain. So besides books, this is my way to keep myself sain. And if I am damned with a life filled with esophagus spasms, then I am going to have something pretty to look at.

Wednesday, March 2, 2011

0 Training

If you feel that everything is shaken when you are working out, and I know its not fun with the high past of aerobic and step, and everything is shaking in every direction.
I know when I am going to get a good workout again I am going to get this training pants (Siri tights).

Fat has nothing to do with size. I am a normal size 8 and I think that is pretty normal.
But when I am sick for more than one week I am getting more jelly on my stomach and thighs. I do try to do sit ups at home, but my scar from my lung surgery hurts like hell when I take sit ups. If anyone has some good ideas, I will receive them with open arms, and a big smile!

Tuesday, March 1, 2011

0 School and Esophagus Spasms!

I did go to school yesterday, and it felt good to be "back". The only problem is that half way into the lecture I got really bad esophagus spasms. I felt trapped, because there were people all around me, so I couldn't get out.
I tried every remedy I couldn't come up with. I drank half a liter of lemonade. I had a meditation session by myself for the class!!

The good thing is that I have become an adult over the last couple of years. I don't care what my class mates think of me, and I don't care that I am disabled anymore. Before I was so uncomfortable when I sat down on my "special" chair in class. But if I need a bed in class to be able to finish, well that is what I am going to do.
Any way there I was in class, me and my esophagus spasms. I couldn't drop my pants a push up a ketogan suppository in the middle of class. I am not THAT comfortable in class either.

But I will not give up school it means to much to me. Its part of my dream, and I am going to fight for that dream, even if it take me 20 years to get my degree! Until that I am here, on my couch, reading books about yoga, self-help and Dan Brown!