1 New Year!

I want to wish you all a happy new year. Wherever you are, I hope you're celebration will be all you want it to be.
Myself and my hubby is going to have a quiet evening with good food and a Movie.
The last week have been very difficult for me, with a lot of pain, but today was a little better then yesterday. So maybe I am getting better. and 2011 will be my year ?
But even though I cant drink, and my body is in no way ready to party tonight we do have some firework we are going to use at midnight.

But please be careful when you are handling firework. When I was 5, my friend got a rocket trough his neck.
The rocket missed by 5 mm., and they thankfully got it out safely.
This incident put scars in my soul, I got really scared of firework, and have since tried to keep a safe distance.
But thankfully, the rocket type firework with a track stick got banned in 2008.
I thought that was a good idea. I think that the government either should ban all firework, or make you take a safety course.
Then you have to show this to be able to buy firework. And if you don't have this safety course you would get a huge fine.
But then again the government have to make the safety course hard enough, so people who take it know the regulation, and the safety precautions you should take when handling firework.

This year I got firework from a friend. I don't really want to pay thousand of kroners for a few minutes of fun.
But when he said i could get two batteries and a candle king 6 pack, i couldn't say no.

Though this year, we are both sober, and alone, so no guys trying to be tougher then they really are!
So have fun, drink, eat, dance, run, talk, kiss, or scream you're way into the new year, just remember to always be safe, in every way.... HAPPY NEW YEAR...

0 Spasm again...

Having another bad day.. Its been a hard week with a lot of pain..
Hoping it will be better soon...........

4 Gastroesophageal reflux disease (GERD)!

As I have written before my journey started with me getting Gastroesophageal reflux disease. (GERD)
I had gotten it because I had taken Votaren over to many years.First my doctor put me on Zantac(active substances: Ranitidin), but it didn't have any effect and on this point I had lost 8 kilo.
  I got a gastroscopy and they could see that I had GERD. They put me on Somac (active substances: Pantoprazol) at first, but it had no effect so I switch over to Nexium (active substances: Esomeprazole) and i took 40 mg x 2 at night. It had some effect, but I had to stay on a strict diet for it to work.

So then I had a esophageal ph monitoring, which showed that I had GERD, and a manometry, who showed that I had inflammation in the esophagus, and that i would be a good candidate for the nissen fundoplication.
I was very happy to get rid of the proton pump inhibitors , and the strict diet, and on November the 9 i walked into the hospital, not knowing that what I was about to go through, would be far worse than what I had already been through. Sometimes the medication is the lesses evil!

0 loneliness

This Norwegian article ( you can get it translated in Google.com), shows that more than 500 people dies over the holidays, than it does in September, the same year
           http://www.vg.no/helse/artikkel.php?artid=10012691
This shows how important it is to have family and friends around you. we all need a good social network.

Source: SSB Norway

I know, because I am so much sick, its not always easy to have those social ties that you actually needs,
just because you are sick and spends most of the day alone.I consider myself very lucky when it comes to friends, but I also know that I want to spend more time with them then my health allows me to. I feel so guilty every time I have to say no. I can see in their eyes that they get disappointed every time, even though they say its okay.
But I am lucky, because my friends don't go anywhere, they are with me through  the ups and downs.

So if you know of someone who is lonely, and we know that the holidays make people who are lonely even more so. Call them, or take them out for something to eat or a movie.
But not think that anyone else will do it, you be that person today who pick ups the telephone and call!

2 Tired!

Sorry i haven't been so active on the blog the last couple of days.
I am having a ruff time lately. The spasms wont go away, and I have to wait a month to get the Durogesic patch on blue prescription ( that means you have to pay 1800 Kr. in deductible, and then its free the rest of the year). and Durogesic patch costs 2500 Kr. for 1 month.

And the worst, I feel like I have missed Christmas again. I just wonder when it is my time to have it all?
When will I get what I dream of, when i am lying here on the couch.
Hopefully I will be better in a few days. Thats the problem, I want to be healthy,and then I try not to show my pain even though I am in a lot of pain.

4 Spasms!

This is how it goes. I was looking forward to Christmas so much this year, since I didn't have a real one last year.
And of course I overdid it yesterday. But when you are sick 35 weeks out of the year, you want to have Christmas.
At least thats what i want. I have always loved Christmas, it has always been  "my" holiday. My traditions.
So maybe its worth been in severe pain today, so I got to have a nice Christmas eve.

I have tried to take the pain killers I have, but nothing have worked. some days nothing will take away the pain.
I am beginning to try that something went wrong when I got the last botox, because every time I am in pain, I either get a scratchy voice or I loose it. I am thinking that maybe the botox didn't ran correctly, and that it affected the vocal cords. But thats only a theory.
My boyfriends things that I possible have spasms in my vocal cords, and thats why I get a scratchy voice.
But we are trying to keep a journal on this things, so we eventually can see what remedies that work, and what doesn't, and what kind of foods I can eat. But we only started a couple of weeks ago so we don't see a pattern just yet!

0 Merry Christmas!

I want to wish you all a Merry Christmas.
I hope you all will slow down, and take the time to enjoy family, friend, lover, etc.
If you are blesst with having people in you're life, I think now is a good time to let them know that you appreciate everything that they do for you, and most important thing of all, that you love them.

Nothing means more than that. When I had to be hooked up to the respirator, all i could think about is that I always have said that if I would have a chance to tell the people in my life, that i love them, I would.
So I sent a text message to my closest friends. And of course I scared the shit out of them.

But I could do that to my family, I didn't now how to say goodbye. I cant remember what I said to my parents, and my hubby, and maybe if I was clearer I would have sent personal text to everybody, but lets face it.
When you are that sick, you're mind begins to wander over to another world, and you're body is starting to give up, but still I needed to face that i might not wake up again. And thats the hardest thing I have ever had to do.
I came to think of this, because my cousin was hospitalized tonight, the night before Christmas. And then I started to think of my  last Christmas when i was in the hospital. Its not ideal, but you just have to make the best of it :) At least you are still on this earth.

So to everybody out there, if you are so lucky to have family, and friends, now is the time to enjoy, and appreciate them, you may not have them next year, or you might not be here next year.
I know that I will!

Big Christmas hugs to all....

0 Christmas Song!

Purchase this song on I tunes. All the profits go to the Red Cross organization.

For 1 dollar you can support a charity.. That is a reasonable price!

1 To my sister Alexandra

From lil sis

0 Yes......!

As a little girl I where a tomboy, I loved the snow. The only thing I waited for was the snow, so we could go outside, and go cross country skiing, alpine, hockey, sled rinding, or just making snowman's, and building castles and having a big snowball fight!

I never forgot the times that I won the ski championship at my school, and when I in 6 grade won the ski jumping contest... that what huge for me, like the biggest thing i had done that year.. and when you were twelve, thats like three years as an adult. One year was so much longer when I was young. And now I feel that I will be old by the end of next year.. LOL!

You are either good at summer sports, or at winter sports. And I was definitely a winter sport girl. I played hockey for several years, as the only girl on the team, and I was not the worst one just so we have that clear!!!!
I think that what made winter sport so appealing to me, is that the snow is usually very soft, so I didn't get that hurt when something went wrong.
And in my life, well everything has pretty much always went wrong. So better to be on the safe side for once.
Hockey is a sport that you do get hurt a lot, but this is where the girl card comes in. Boys are a little afraid of hurting you, so that made it easier for me to score a goal,without all the bruises.

When I was 5 years, I finally learned how to ride a bicycle without the support wheel, and I was going for my first ride alone. I felt on top of the world and that nothing was holding me down. Queen of the world, even thought I probably would have said king of the world.(tomboy)
And then I got to this small hill, and today I don't really see it as even a hill, but when you are young, everything is so much bigger.
But I felt like I was on the top of Galdhøpiggen, and I was going to bike down this mountain.
So I went for it, and I felt like I was flying down the hill, but then I lost control of the bike and slammed into a trashcan.The trashcan then opened in the bottom, and i got all the garbage over me..
It was so disgusting. So there I was, several bruises, and filled with garbage.... Now do you understand that I am a winter sport person??

2 Thinking about others!

Its only a couple of days until Christmas, and a lot of us have a good job, family, and we have just about everything we need, or want, but there are a lot of people, and children out there who could need some help.
So this year, buy a gift for the people in your life, a gift that really mean something.

Doctors without borders, The red cross, Save the children, Haiti Relief Fund, Breastcanser foundation, or maybe a national or local organization. Try to help someone who has less in this life than you, or who has an illness they need help with to get better. Either that is to give money, or to volunteer!

I live in Norway, one of the richest county in the world, and Yes i complain, I want my health to get better, and I get money when I am sick and cant work.
But the truth is that I am lucky, I have a home, electricity, cloths, shoes (many), and a hole lot of things I almost never use.
If I had been sick in many other countries I would not have gotten any help. I probably never would have seen the inside of a hospital. and I would have to work 16 hours a day, just to not get what I needed.

I have said the word I 14 times,I should for a moment think about others. thats my new years resolution, what is yours?

0 How to be a boyfriend to one with esophagus spasm

The last year, since October 2009, has been a real challenged for me. To be a relative to one with such subnormal situation as Alexandra, is beyond all imaginations. The whole last year has been a fight for her right, and fight for getting her sufficient painkiller.
To fight at system as a relative that are surely wrong, or doesn't see the whole picture, is like the old bible story: David and Goliath, you are sure fighting a battle that you aren't meant to win.
I have learned a lot the last month what esophagus spasm really is. I have spent many hours reading articles, forums etc. So my knowledge regarding this topic is beyond what the general knowledge of doctors here in Norway know, or probably most of the doctors here. And for a doctor that knows he or she has less knowledge than a relative for a patient is really provoking for them. And that is one of the things I find really stupid, cause why can't doctor (and nurses) collaboration with relative. There is so much professional pride in the  health system, especially here in Norway. Which leads to unnecessary use of energy.
Anyway, to be a relative to one with esophagus spasm is also very challenging. I never know when the spasm appear, and how strong they would be.  I also know when Alexandra get those really strong spasm, she is totally paralyzed because of the pain. This means I have to take action if she is so sick that she has to go to the emergency room, or if she would need botox, etc.. So I have done a lot of the administrative work; like contacting a lot of people, while she is sick, and I could say it's a huge task and very time consuming.
My experience regarding either her back pain, reflux decease or her pain after lung surgery, I would say she had more or less control of these deceases in contrast with the spasm. From my point of view the reflux pain is "easier" to understand what causes the pain, like in her case eating spicy food etc. which lead to serious(!) pain in her stomach. But we both more or less knew why she would have pain even tough it was really painful. With proper diet, she was spared much trouble.
She is not in control of this spasm situation and I can't do anything to relive the pain. Everything seems so random at this point and that is the most frustrating part. Sometimes I could almost wonder if there a person somewhere with a voodoo doll that looks like Alexandra, and stick pins in her throat at random times.
So to have problem in the digestive system, leads almost instantly to a disabled condition. And this effects not only me as a boyfriend, but the whole family.And like the phrase for x-files "the truth is out there" , this is what's driving me further to find answers for this kind of decease. There has to be an answer, or at least something to relief the spasm and/or pain..

If you as a relative has some tips about dealing with the situation, or maybe how to find some answer to this illness? Or otherwise, ask me if you have any questions.
 Sincerely

0 Eating Disorder!

People with severe pain because of esophagus spasms, have a possibility to develop a fear of eating!
And i am scared that i am becoming one of them.
I mash all of my dinners everyday. taking the dinner for a spin in the blender doesn't really do it for me. It looks like someone has had food poisoning and accidentally craped in my blender. Doesn't that hear like something you would want to eat??

I should have food that would make my appetite better, not worse. I have never thought that I would be in the position to develop a eating disorder.
You hear about this girls, and some boys, who have different eating disorder. Anorexic and bulimia are the most known eating disorder out there.
But what I have read about them is that its all about control. They feel like this is the only thing they can control.
And after what I am thinking it sounds very correct, for me I guess I think that I have no control over the spasms, but I can control my food, Doctors keep asking me if I am scared of eating? What the hell do you think? You don't need a Ph.d to see that I am scared.
How would you feel, if you had to eat a piece that is bigger than 5 mm. and you would know it would hurt like hell? I can't swallow pills, and a steak is out of the question.

I am going to start to dream again. I dream about a cheese sandwich, tacos, bread, chips and dip, and a hundred other things I can't  write because it wouldn't  be that interesting to read. But that whats going to keep me from developing this illness. Having all this urges. And I am going to hold on to them, I never know, in my right brain I can probably eat what I want tomorrow, but the left one knows better.

But this is a illusion, I have no control over the spasms. they can come after a meal, it's strange but I seem to have more spasms in the evening, and at night. but why? how the hell should I know? I am not a trained physician.

2 Chat rooms!

I have gotten a few good tips on sites and chat rooms for people with esophagus spasms. I have joined one of this sites, and posted a little bit about myself, and tried to come with some good suggestion.
One if this site is Healing well.com .
Its a very good chat room, and for ones I don't feel that lonely anymore, of course it would be nicer if someone would share a little more on my blog, because then there is at least one blog out there who has gotten all the different medicine, and alternative treatment etc.
The more I read, the more i get to understand that this is a big problem around the world for us that have it, and far to little research on the subject.

I started this blog with the hope that I would meet different people out there with the same problem as I have.
 But I guess its not enough for me. I need somehow to get to the bottom of the wheel.
 I am willing to do anything to try and find different solutions. Because what I have seen is that we all react different to the treatments, and have different degrees of success with the treatments.
If we could find different ways to have more dignity in our life's, it would be a huge victory for us.

I Guess that sometimes we need to realize that the doctor doesn't have all of the answers, and that you have to find them you're self .
And I am going to try to find different things that can help, explain a little more about the different procedures and medicine i have tried.
I do belive I can explain better than I have up to now. I have used this blog as a way of getting my feelings of my chest. its important to get those feelings out, and not hold on to them.They will make you go crazy if you don't deal with the mental pain. And having so much pain for so long, it would almost be strange if I didn't need help.
We need to not look down on people with mental illnesses, because its a diseases on the same page at physical pain, and studies have shown that approximately 40 percent of women, and 30 percent and men gets depression at least once in their lifetime.

I have one more link. Its a girlfriend who is trying to get some help and understanding about her boyfriends problem. She calls it Nissen Nightmare.
This is also about acid reflux witch I used to have.
So if some of you want to know more, just write to me, because I know a lot about this topic.
I had reflux for approximately 4 years, and that was a hard road to walk on, and I thought that a nissen fundoplication would make everything better, but as I have said previously that surgery is what trigged the esophagus spasm.
I would say to anyone who is thinking about Nissen to think twice, because research have shown that approximately 10-20 percent gets side effects from the surgery, and not 1 percent as they said to me.
And in my case the side effects gave me a new chronically disease, and one acute disease when I got that infection in my lung.

0 The holiday spirit

Today has been a slow day, I have pretty much spent the entire day on the couch. Okay so I did take a shower, and  mashed fish and potatoes-as usual for dinner. its a week until Christmas and what i miss the most is the Coca Cola Christmas advertisement:

I think Cola has made a huge mistake making a new video without this song especially. Okay so if they wanted a change, but don't take out the song and the trucks. But they can fresh it up each year.
So I am so depressed, why Cola, why?
Even Elkjøp ( a Norwegian electronics shop), uses the same TV ad every year. They have understood that we get some feeling out of seeing the same one every year.
Its like watching Donald Duck with friends every year:

                                        
                                        

And seeing three nuts for Cinderella:

And for me thats what this holiday is all about. traditions. I do agree that we each should make our own traditions, but some of them are soo good already, so why change them?  Maybe we should get some new ones, but still have the old ones as well.
I like that when the Cinderella story comes on its starting to smell the food in the oven, and that the dam Coca Cola ad when I am watching another channel.
And the night before Christmas we always watch National Lampoon's Christmas Vacation:

I simply love this movie. Its such a great story. Don't we all want a great Christmas? And haven't we all done some things that are Griswold like? In my family the big problem have always been with getting the tree in the tree socket. Its been so many years that it have broken, and the night before Christmas we drove around to every gas station to get a new socket. Why didn't they learn that the socket needs to stay indoors, because its made of plastic, and that breaks if you set it outside in -10?
And then its the Christmas lights, my parents used 18 years before they got the hang of it, and my moms cousins always came, either to watch or to help with the light.
And as my moms cousin now says, its not as funny anymore, when they are not fighting over those lights. I couldn't agree more :)
Of course we know all the words in this movie, but we change between the movie and this show that has Norwegian Christmas songs, and show you have to prepare the Christmas dinner.
We also have this comedy routine that they have showed for as long as we have had TV i Norway. At least I cant remember that I haven't seen the countess and the headwaiter:

And since I was born in 81 and they have showed this since 1980 its not really that hard to belive that I cant remember I time that this wasn't on the TV.
So now I have showed you all my Christmas ad, film, and cartoon I have to see to get into the holiday spirit.
Is it just me that must see this shows to get into the Christmas feeling? Or do you have something that you just have to watch to get into that feeling, or do you just need "gløgg " to get that warm fuzzy feeling?

0 Colposcopy !

Yesterday I had my colposcopy, and it was hard to hear that I had the worst cell changes C.I.N 3.
And it so unfair. why do I always have to be the one that gets everything. Again my f###ing luck,
Not very fair at all.

So the last 24 hours have been hard, I am so scared that this is more serious than I first thought. They said it would not hurt but its not true. its very unpleasant to have this procedure, I don't like anything that has to do with the stuff down under,to say it in a nicer way.
And its strange that I feel like this because I have had like a hundred gastroscopy, and thats more invasive than anything I have been through.
I have this terrible nightmares that I am dying, and about death. I guess that this is harder than i first expected, its been such a hard year, why does it have to be become even harder ?
Why do i have to get everything? When is my time to just lean back and enjoy life? And not be so insanely scared.

 I have always been very tough. But sometimes even the strongest of us, need to be vulnerable, and cry, be scared and have a fear of dying.
After i had been in the respirator i was not scared of dying, i just thought it was so unfair that i survived  when so many die everyday, why me? Did i survive just to get cervical cancer ? shouldn't my life be more than sicness ?
And thats what is the hardest, illness does not see, it just strickes with the force of a hurricane.
Everyone always says; its always the good ones that get everything. But who are the  bad people? Aren't we all both good and bad? Neither of us is perfect, and i know that i am far from perfect. I think that my body is the bad part, and my soul is the good one.. And i hope others will se past their bodies, and see the goodness that lying in their hearts!

2 Friends and Family!

When a person is sick, everything revolves around that individual, but what about family, friends and you're better half?

I don't  know what other families does, but mine; We stick together.But it's not always easy.
Parents are very protective, but they are also very scared of loosing their child.
I have been told that when i was in the respirator, my boyfriend almost past out, seeing me like that, my sister almost did the same to.
My Mom sat beside my bed from 9 am, to 6 am everyday. she called the hospital every morning at 8 am, and every night at 8 am and 11am.
That's a time where my family had to face the possibility of me dying, and I couldn't be there for them, because I was on the other side of the crisis. And that's a lonely side. it only has one person.
But my family had to care for me, as well as taking care of their own emotions. And I can't even start to imagine how they must have felt!
To loose a child? that is a pain most of us will never be even close to feel how it feels to bury you're own child. When a family member gets sick it involves the hole unit.

My boyfriend was the one who my absence was most visible. Nobody was there when he got home from school or work. the empty place in the bed, nobody who made dinner, laughter, fighting over couch rights, favorite advertisement who make me run to the living room to do my stupid dance that always makes him smile.

 

But when I wasn't there, the commercial was a nightmare to watch.

He is my chosen family, the guy I want to spend every day with, the guy that if I am going to have kids, it's going to be him. And it hurts me that he had such a hard time when I was sick, and that he had to feel what it would be if I weren't there. he has as many scares as me, but people only focuses on my scares because they are visible.

And then we have friends that makes the days go faster. To have friends when you are sick is a lifesaver.
It's so important to have good friends you can cry to, be mad at, sleep when they are there, look like crap and they still say: you look good today! HM you think, I have looked like crap for 5 months, but thanks for the nice words that are said with the best intention.
Like so many have said before me, but I have to say it anyway: Friends are the family you choose!
 And I am blessed with some really god friends, who comes to my rescue in my darkest hour.

8 Painclinic and Doctors!

Now i have been to the pain-clinic, and he said that i am staying on the dosage that i am on. A huge relief to me. The doctor at my local hospital said that i didn't need the Durogesic patch, and that my pain couldn't be treated with opioid s. he couldn't be more wrong, and i must say, i do find some satisfaction in that. I am also going to use Lyrica, Catapresan and Sarotex.

I am going to use that until February, where we are going to look into different things if the pain isn't smaller. They are going to check my lung capacity, pain school, hypnosis, psychologist, and make sure that i don't develop a fair of eating.
 I am starting with the psychologist already i January because i have post traumatic stress disorder because of the local hospitals treatment of me.think that you can have nightmare because they were so mean to you?? we have mailed Vestre Viken HF about what is going on, and that it is irresponsible and unworthy. i hope they don't treat other people that have a unusual disease.
They didn't belive that i had pain, they belived it was just psychological, but as my doctor at the national hospital said is; it not psychological pain, but you can use you're psyche to better deal with the pain :) They will also look at the botox, because its not the best treatment longterm, because the effect will be smaller, the more you take this treatment.

We also talked about if botox is not a treatment for the future, the botox i get is experimental, because they inject it into my entire esophagus (you can get a sleeping medicine so you don't need to be awake during the procedure.)
Then they will try to find drugs or treatments in other countries that have more knowledge about this illness, and thats a big relief, but if what i have read on the internett is true, then there is not much different  drugs and treatments in other countries. Maybe we are to few with so severe pain that they don't use money on it.
But it could be that there is some doctor sitting in a small office in a basement, who are researching this topic.

Thats what really matter with the health care system, if the doctors or nurse don't belive you, its a terrifying situation to be in.
You can try a lot of different drugs and treatments if you're doctors belive you, because its the only thing you need to have: Trust

One thing i have though about is how the doctors talk to you. If they are arrogant,condescending,have made up there mind about you before they have meet you. Then you cant really work together, and the patient will get a worse treatment, and maybe be misdiagnose. Then you will not be getting the treatment that you should have.
We need not to be scared to tell our doctors what we feel. Doctors need to be able to get constructive criticism, and NOT want to help a person because they said you could think twice about you're languages, or why you don't help a person, when its obvious that the person is in big pains??
It still baffles me that some doctors, especially new ones who has chosen a specialty, and feels like they need to impress the more experienced doctors. They should try to impress the PATIENT not the doctors.
The one thing i have learned is that surgeons cant talk to the patients with dignity. They should all be locked up in the operating room, and never be in contact with a patient who is awake!

4 My Dreams!

There is one thing that a lot of people don't get. doctors, readers, family, friends and foes, a lot of them think that i take the painkillers, relaxant, antidepressants and they think i take it because of the pain, but they are wrong. I do it for my right to live. Live my life the way I have always dreamt about. To eat this everyday is not one of them: 

To have a job, where I do so much good. (i am going at a university at the moment) Of course working as a volunteers for the red cross does help in feeling that you're life has meaning, but it would be nice to be able to do that more than 2 hours a week.

I want kids, but not let us get ahead of our selfs, first I need to see how the surgery goes on Wednesday.

Before I got the message that I had cell changes in my cervical, I asked myself the question if I should have kids?

Isn't it selfish to just think about my wishes, and not about what life my kids would have? If I already had them I could understand that we had to make the best of it, but I am not in that position. I can choose, and my worst nightmare is that I don't get better and cant do all the things I want to do with my kids. play, go cross country skiing, go skating, play football, hiking, traveling and all the other small things in everyday life.

I don't want to say that mom cant join because she doesn't feel well, and have to spend the day on the couch. That would be my living nightmare to always have a bad conscience, to always feel that I should do more, be more than I can. I don't think i could live with that. Because the dream was always to be a good mom, not the couch mom.

And the last wish, the house. But I have never wanted the big house because of my back problem. I have always known that I cant clean a big house. So my dream is a small one, with a little garden, and big enough that we can have friends over for barbecue, or our yearly Christmas party.And that the kids could have their own rooms. But again, do I need the house if I don't have kids?Or cant have them? We have talked about adoption,because I have also wanted to adopt. there are so many kids out there who needs a good home. But the couch mom, is that a good home? On the other side, adoption is very expensive, I cant just cough up 60.000 dollars. But I would love that child with every bone in my body, and then some. Would love make up for me not being able to be there?

4 My weekend

Okay so have I been on a lot of pain killers the last month.. Truly sad that some doctors only think its mental pain. because I have done all of tests 4 times.. How many times do I have to do this tests to be belived.

 Anyway. I have had a busy weekend. On Friday I made Christmas cakes with my mother in law.
Well she made them and I talked.But I was totally tired and felt a slip when I got home.

 

On Saturday we went downtown Oslo and took care of the last Christmas shopping, yes I do not just think that my small surgery next week will go smoothly, no other surgery I have had have, so why should it now?

My sister Marthe met me and my boyfriend in Oslo, and came home with us, for some good food and conversation. She slept over and went to work.It was really good to see her again. She is almost 20 years old. Its so strange. It feels like yesterday that I was told I was going to be a big sister again.. Amazing how the time just fly by..

Today I went to a mall and got some nice clothing to wear on Christmas eve. Yes in Norway and in my family we eat ribs on Christmas eve, and for dessert we have cloud berry cream.. Its so good.

And again we do go around the Christmas tree singing Norwegian songs. This is one of the songs we sing, and the one I love the most:

We  do open the presents on Christmas eve. This year its going to be my parents, my boyfriend (we have been together for almost 6 years, so the same as married)haha, my sister Anette, and my grandparents. I am so lucky that I have only lost my grandfather on my mothers side. I am very lucky in that way.

So thanks to some painkillers I had a nice weekend for a change. When you are as sick as I am its nice to get a break, and for a little while I can feel normal, like everybody else..

So all over, the first good weekend  since mid October..

2 Human right!!

Why is it that the Norwegian health system works so badly?
Everyone says we should be more like USA in that way, yes you do get right to a specialist, and good treatment... If you have health insurance, but you probably need a great insurance. why can't the public health system see what the private ones are doing that so many people think is good, and implement that into the public health system?
But the only thing we shouldn't do is put a price on a human life, or how much a treatment costs.
money and medical treatments do NOT go together and never should.
If we do, then we have lost a part of our own humanity. Nobody should be refused treatment because of how much money they have. When it comes to our bodies the only thing that should be on someone's mouth is:
What can I (we) do to make this person as healthy as possible? and nothing else........ health should be only about that, making people better, cure them, save them, and if someone is sick without a cure... Then the doctors should try to find one, either in their own county or in another. That is the only thing the doctor should think about.

it's a human right. not a money issue!!!!!!

4 Because of them

Isn't that what all of sick people out there are trying to find; a cure, or a way to make life manageable?
Illness doesn't really show any racism, it hits us all hard. maybe in different ways, but we all go through the same stages of pain before we get to realization, denial, anger, or grief are some of the steps we have to take if we have a painful chronic disease, or a deadly illness.

We all have to find our own way to fight. and some times we give up for a couple of hours or days, and then we pick ourselves up again and start over. not one of us will give up without a fight, and we can't, if you have a bad day think of the people around you. and fight for them.

The worst for me when I was going to be put on a respirator was that if I died? How could I be there for them? And to say that it is okay? To give them a shoulder to cry on? When I was on that respirator I didn't fight for me, i fought for them...
I knew that they could live without me, but I couldn't be the reason for their pain, because I gave up.
That's what I did, and keep doing.

4 were are we going

Today i finally got an appointment to the Pain clinic on the 14 of December, and I am hoping with every bone in my body that they will find a way to make my pain less, so I can live a little more. I am starting to get tired of this couch. and I wanna decorate the house for Christmas, and eat without fear.

To have a disease that makes you scream by just swallowing food, liquids, and my own saliva. do I have to be scared to eat for the rest of my life? And I never know when the esophagus spasms are coming. sometimes I don't even have to eat anything.
what I would like is to talk to others that are in the same situation, and what has helped for them, or if they are in my position: maybe we could help each other. There has to be something out there that can help, but where? even if you don't have spasms but have found some coping techniques for living with chronic diseases?
Its not easy reading articles from different countries with Google translator... it's not always precise.

4 Desember!

December has always been my favorite month. I love snow, shopping presents, decorating, candles, Christmas trees and I love that even though all of (us) kids have grown up, we still go around the Christmas tree. and we still open one present at a time. Christmas eve is the one day a year you have all the time in the world. We would open presents all night long if that what it takes. One Christmas we used 6 hours, but we had a lot of fun during those six hours. and I love all the typical Norwegian foods and drinks we have this month.

It has always been the time of year where my boyfriend and I gather all of our friends and have a Christmas party with good food and a lot of aquavit. Sometimes we can even take a little walk on the lake, or just walk late at night while it's snowing. Some of us girls have taken the ferry to Denmark to party, and just being the girls. that was supposed to be last weekend and I cant really make any plans with my health. so maybe next year. and the Christmas party was going to be this weekend, but that will not happen until next year.

Oh well on too a totally different topic: The cold is the only thing I am not too happy about. But when you live in Norway, you get used to it or move. it's really not that a difficult decision. I have sometimes played with the idea of moving somewhere warmer, but my family and my friends mean too much to me.
If you are as lucky as I in both of those categories you'd stay right where you are too.

And isn't that what matters in life? A strong tied family, good friends, and for me: a good show on the TV, or a good book. and of course travel. learning new cultures, and meeting people at the place they are in there life, because we influence people all the time, and maybe most when we don't even think about it.

I have always had this philosophy, that every person that walks by me, I either smile to them or say hello and smile, because I don't know what that person goes through, and if my smile can make someone else smile one time that day, or maybe changes their state of mind, well I would like to think that I have made a difference at the end of my life.
You don't really have to be the president to change the world, it is the small things us "meaningless" people do that makes the world into good neighborhoods, and communities. because most of us can't see the whole world, its too big, so we just try to see what we can change in the area we spend most of our life in.

2 today has been a good one...

I have had 2 good friends who came to visit me and gave me a lovely flower bouquet. one of them, have a little baby that is 5 months old.
It's nice to see people, and not get to isolated, when you are in pain, but think about it for yourself? how would you deal with overpowering pain? We all think we are so strong but when all comes to all, it's okay to not be so strong, and ask for help. Being in pain is no way to live, been drugged down so much that you just sleep all the time, is not a way to live either. The doctors have to find the golden midway. What is hardest is that I really don't want to go on any medicine at all, I just want the doctors to get off their asses and cure me.

But this has been one of the better days i have had, and comments that I am becoming a junky, it's really not necessary. Would that person have said that if I were fighting cancer? Or any other known diseases that we know are painful. that's what is the hardest. Nobody believes you because they don't know the disease and how much this hurts.

It's not a good feeling to hope that you could have an illness (like cancer) that there is a hope that you can be cured. Because this is the problem. They can't cure me, so how do you people out there think I should grab this "state" am in?

We are looking at every single website we can find. We have bought the latest research on esophagus spasms, we are trying alternative, and experimental treatment. but none of this will make me healthy, it will only make the symptoms less visible.

So for all of you out there who thinks all I will become is a junkie, come on.... either give me some hope that can give me a chance to find a cure, or stop being so judgmental!



Aren't the flowers pretty?

2 what a day.........

I am still on my strict regime to use less pain killers. but today this went to hell. My pain just grew and the spasm came more often and stronger each time.
I am so lucky that I have a nurse that comes home to me every day to see how I am doing. And today she said that this can't go on any longer. It's tormenting to have me lying at home in this much pain.
So we called the hospital, but of course they needed the nurse to call them. And tell that we didn't lie.
Again you are always being seen as this person fishing to get more drugs. for the F..ing last time. Do they really think that I would choose this life? Seriously..??

But as long as you have a condition that is not mainstream you are stamped as a drug addict. Just because you are in pain that the doctors can't fix with surgery or a magic pill. It's easier to say that you are addicted to the stuff, even if you have just used it for 2 days. that doesn't matter. They have to have something on you, to use against you if they want to try something that everyone with a brain will understand would help the situation (condition)
My mom has always taught me to respect doctors, police officers etc, but how about you doctors start to see that you are working with humans, and listen to us. And admit that you don't know everything. We do respect you too, but don't start lying, when we know a lot about the condition. i think it's sad that I cant respect or trust doctors anymore.
But when we got there it was like a ghost town. The emergency room was empty. and it still took 4 hours before my pain was at a low enough level so we could go home.
But the snowy, icy weather might have something to do with why people are staying home tonight.
Stay under your quilts and use that someone special to keep warm

2 what now

i have tried pills Adalat no effect, Viagra(Sildenafil) no effect, in any way at all. you get where i am going, they have tried Botox 4 times, 2 times successful, and 2 times not the improvement that we had hoped for. i have taken stesolid, ketorax IV, morphine IV (stopped using morphine IV cause I had an allergic reaction), antidepressants, oxyContin, ketalar, ketroax PCA pump, nitroglycerin(1, 2), ketogan, lyrica, neurontin, epidural and a whole lot more i can’t even remember. but look at the bright side, who else have gotten the government to pay for Botox and Viagra??

i have tried acupuncture (see bottom of the page), 3 drops of peppermint oil in a glass of water, Oliclinomel, and i am going to try hypnosis to better deal with the whole pain situation. i am willing to try everything, and when you end up in my position you have to try everything, or you have lost. I also go to a psychologist; you have to treat your whole body, not just the physical but also the psychic part. everything goes together.
Of course there are days that i crawl under my blankets and want to stay there forever, but that is a part of the healing process. to come to terms with the fact that this is permanent, but i am far from coming to terms with it, hell no....

but i can’t keep doing this everything is perfect to friends and family, i have to change, i have this problem that i don’t want people to see that i am sick, but how can people be considerate if they don’t know that i am having a bad day. my only fear is that they will see it as irritating and not just me being sick me. we have to work on that one.
I must do this for me, and only me, and don’t feel guilty because i cant just do things impulsively. i have medicines and energy level to take into account when i say yes or no to something. and i guess i cant feel guilty if i don’t have the energy to do everything.
but i always feel guilty if i don’t give a 110% for someone else, i live to help others, probably why i joined the red cross to help. it gives me more, then i think i give them, but still, i have to learn to say NO, but how do i do that without feeling bad? i wanna make people feel good... without draining myself of energy

2 my day..... how was yours?

Life isn't always bad, I had a visit from my grandparents who I love dearly. and then my friend Elisabeth stopped by for some good girl talk, i really need to get some things off my chest, and I cant write it all in this blog.

Then a good friend of my stopped by to see how I was doing, but tonight has been very painful.
I have basically been lying in fetus position all night. the f***ing spasm are of course coming back now that my fentanyl patch is in a smaller strength. if you think that the pain isn't there it won't be there. what a load of crap! I have prayed many times and hoped that my back pain would go away, but I have still not seen such luck. don't get me wrong, I do believe in the power of trying and not giving up. I should not be doing all the things that I do, but I am, not now, not ever am I giving up. I am going to get a life.

Think about that for a second, what do you really want with your life? work? husband? wife? kids? house? pet? what are your hobbies? take a minute to think what you can do today to get the life you want, that you maybe have pushed far back in your brain, and think what you can do today to get one step closer to that dream.
But remember, don't only dream for you, do it for those around you that you love, maybe they need help to achieve their dream. I know it's a cliché, but none of us know when a serious illness will strike, or worse.
I have lived with illness all my life, but to get a new one when you are an adult it really throws you. and esophagus spasms as strong as i have is like having a cramp in your calf and multiplied that by ten, with no way to get it to let go. how am I meant to live with this? how can they give me up?

And the worst is that they are saying if I had cancer or was older they would ease my pain. what does having a known disease and old age have to do with pain? so i cant have pain because I am young? so because I am young I have to live a painful life just because of my age? and that life without help, will be a life in torture every day, eating will be a nightmare, and life will not be living, just existing!

4 my f**ing luck

Today I got a nice letter in the mail that told me I have irregular cell division in my cervix and it's so big that they have to go in and cut out the part that have the irregular cell division, and send it away to see if there are some cancer cells. So the 15 of December is the d-day for the surgery. Here i go again.
A friend of mine said today that I should postpone the surgery until after Christmas, he said you know it will go wrong, it always goes wrong with you baby.

It sucks to always be the person that everything goes wrong with, why cant I be the lucky one? I have said the last year that when I turned 30 that my luck would turn as well, but do I have the time to wait until I turn 30? Now that something is wrong with my cervix, it seems that nothing is going my way.

I did what a lot of girls do in that kind of situation: major shopping spree, got some good holiday presents, and some nice stuff for my guy, cause he is the best one in the world. I love him with every bone in my body, that idiot... but he is my idiot. and he will be that all my life as they say, ring or no ring, that's not what matters. It's only the feeling we carry around in our hearts..

0 christmas shopping

Today my parents took me out for some shopping to get out of the house. I always get shocked by how many people I have to buy gifts for. but I am over halfway there. so that's a start.
A shopper as I am, I ended up buying new winter shoes for me. New indoors shoes, two tights, new sheets for the bed, and mittens. I can never shop for only what I set out to buy.. I think it is a disease, my brain looses all focus.
I have to make lists with who I am buying for, what I am getting them, and who remains, or I will buy several things to every person.

My brain doesn't work with this Lyrica pills. I walk like I am drunk even though my brain is clear, so high heeled shoes are a no, no. unless i wanna stay a night on a drunk cell, because i have no chance at walking on a straight line. So Lyrica makes you feel like an alcoholic. I hope that someday a drug comes on the market that could help me and others like me to have a normal life as possible, because to live like this it is the same as not living at all. I sleep all the time, I cant follow a conversation, I lie crying in pain, I can eat 2% of what exists on the marked, and all I want is to go to school, get my education, and start teaching. and also get back to the red cross and help those who need help. I want my life to have purpose again.

2 perfect system

Today my home nurse should have been here, but of course she was not. maybe the hospital has forgotten to call them. It wouldn't be a surprise.
I have been awake for 4 hours today. they have given me strong sleeping pills so i will sleep and can't complain about the pain. i don't understand them at all. Why not give me the medication that will keep me pain free and awake? So this is the good life they were talking about? the life that would do so i could live almost normal?. I am so sick of this “normal” term, there is nothing normal about being sick.

3 kicked out

Today i got the boot from the hospital. they said i couldn't stay there anymore and were very rude towards me. They are also starting to cut my painkillers because if “i just think that it won't hurt it won't hurt”. the same as always… They don't believe that this pain is real, and worst of all how really fucking crippling it is to have this illness.
You can never imagine it before you have gotten it. I have been sick a lot in my life, but this illness is not even close to being like anything i have experienced in my life. and they think it's just so easy to live with! they are more worried about the side effects than actually trying to help me.
And the less they can help, the meaner they get to you. doctors hate to "loose" and will never admit that the patient sometimes knows more about their own body and about the disease. we have read everything there is to read, i doubt that the doctor have done the same. even one doctor suggested a treatment for me without even reading my journal. how fucked up is that? Can we even trust doctors anymore?

So here i am, lying in my own bed. having a lot of pain and no were to go, no were to turn, because if they can't treat you. you just get sent home to live in a pain hell the rest of your life.  am 29 years old, I always thought that that was a little early to give up a person, and judge them to live like this. not being able to function. but i was wrong again. they do pretend to be gods with people's life. why not use it for good instead of evil?

0 everything is a mess

I am so sick of everybody telling me that we are not giving you any more pain killers, because we want to help you. what the fuck?
I wanna be pain free, how am i going to live a dignified life, lying in a bed crying and screaming because i don't know what to do with myself. If you are in enough pain you are more likely to jump out of a window than stay and fight every single day of your life that seems more like a living hell then a life with dignity. On the other side i shouldn't have painkillers because of all the bad side effects, so lying in bed having no life is a good side effect?
I am ADDICTED TO BEING PAIN FREE, it's not fair to say that I just have to work with myself mentally, I have worked with myself mentally, I see a psychologist.. what more can i do?
when a doctor slams in your face that there is not a damn thing they can/will do for you, they should try to tell the patient with a little bit of understanding and dignity. It's not easy being told they don't have a treatment for your condition. that you are basically stuck being in this hell hole the rest of your life?

0 Given up

I think it's so sad that my medical situation is going nowhere. The hospital won't help me, and they won't give me any procedure to relieve my spasm situation, so in other words they have given me up for the next 6 months. The only thing they (the hospital) does, is trying to relieve my pain situation with medication. And these medication experiments on me are painful as hell, so I hope they will soon find something that takes some of my pain away

0 why?

what i don't understand is why does everything comes in percentages? i had 1% that something would go wrong. couldn't it be better if they had explained the different consequences, or problems. i would have liked to know what different problems that could come from the surgery, not the % of how many who gets sick after the different surgeries. if i new i couldn't get spasms i would never have gone through with the surgery!!

0 Welcome to my blog

Hi, my name is Alexandra, I'm 30 years old (2011) and I live in Norway. I have been fighting and struggling my whole life with pain. The last year I got two more chronicle deceases that I now have to learn to fight.
That basically my story.

 I have lived my whole life with spondylolisthesis, its painful back problem. This is a genetically related disease, and as the article say its defined as congenital spondylolisthesis.
When I was 14 years old (1996), I had a surgery to relieve my back pain situation. They stiffened L3 to L5 vertebra's.
Due to this surgery many nerves got squeezed, so my situation got eventually 10 times worse.
I have been living with more or less constant back pain since 1996, and unfortunately there is nothing to do with this chronicle problem.

Some says that one problem seldom comes alone, this is so true for me. To relive my back pain I used "Votaren" from right after my surgery until 2007. At this point I had gastrointestinal bleeding and strong pain in stomach.
It was my mom that saw the connection between the Votaren and my intestinal bleedings. Due to this I got the diagnostic esophageal reflux  in 2008.

Three years later with quite strict diet and large amounts of Nexium I finally got approved for a reflux surgery that would relive my acid problem. This surgery was Nissen fundoplication, a surgery that help most people. Well yes most people, but that is definitely not me. I got told that there was 1 % that encountered complications as a result of this surgery. Well even tough I have later read about this, its a lot more complications as a results from this surgery, like 10 -20 %. And of course I had to be a part of that statistic.
The reflux acid problem was solved from this surgery, but I got seriously strong and painful spasm in my esophagus.
Ironically they solved acid reflux, but with the spasm I couldn't eat or drink anyway.
This surgery normally involves 1-2 days in a hospital to recover, but for me it was 5 month.
The first 2 month it was a pain hell where they didn't' know anything about my situation. Two botox injections later my spasm situation good a little better, I could at least eat liquid food and swallow my saliva. Short time after the botox injection, my lung started to get seriously problematic. I had developed a pleural empyema / lung abscess. My situation was so serious that they had to put me in a respirator. My life was hanging in a thin thread while I was in the respirator, and my relative never knew if I was going to live to the next day. But this time (only), I could say there was a lot of experts that was helping me, even tough they used over 1 week to figure out what was wrong with me. So they save my life with this huge lung surgery ( they removed the pleura of right lung. ). My lung was filled with so much infection, that they had a real challenge to get rid of it.
Why I got this infection in my lung is a big discussion between the two hospitals I was inlaid in. But many think this is not related to botox injections, but rather the gastro acid surgery (Nissen fundoplication). Anyway one thing is certain that this lung problem is a result of a complication during my hospitalization.
As a result of the respirator, I lost almost all my muscle mass. And I had to start training from scratch. This took really long time.

But I could say my situation after the surgery got rapidly better, even the spasm got better. Eventually I could start eating more or less normal. Step by step I increased my length I could walk, from a couple of meter to 10's of meters. In march (2010)  i got discharged from the hospital.

A couple of month with walking every day, I slowly regained my health. During my short time home, my spasm started to reappear. OK this time I somehow knew it would come, cause the botox last for approx. 4-6 month. So it wasn't this huge surprise. So I contacted my hospital to make a appointment for a new botox injection. Since I (have and) had my spasm so high up in my esophagus, they were really cautious about this for this is experimental and considering what I have been trough they wouldn't inject it right away.
I waited almost 2 month before the gave in. At that period I tried "adalat" with no effect.
The botox injection when really well. I was out of the hospital same day, and started to eat soft food the day after.
During the 5 next month my life was going really well. I started at school, and started training, and most of all I started volunteer work at the red cross organization. I was really happy how my life was going. And finally I could start living the way i wanted to live.

But unfortunately happiness is never lasting, well thats my case.
In October (2010), 5 month after last botox injections, I got my spasm back. Well again no surprise.
I contacted the hospital again, and this time I made a appointment without any problem.
After the botox injection at the hospital, everything seemed fine. I was laying in the hospital bed and just waiting, like last time. Suddenly one hour after the injection a seriously painful spasm started. Since the spasm "shouldn't appear", the doctor wanted to send me home right away. But me and my boyfriend, we fought for my right to stay at the hospital. I had nothing to do at home with this kind of spasm, and without anything to ease my pain.
Well eventually we understood that botox takes approx. 2 - 14 days to spread. So I just had to wait. One month after (today), the situation is not prefect, and I'm still at the hospital. The situation is better than a month earlier, at least I can eat soft food, even tough it's still painful.
Last day the doctor now told me that there is nothing else to do with me. My medical situation is not possible to fix. So now they are trying to find the right painkiller medication so I can handle this situation at home.

The spasm situation is my top point for what I could handle. My lung and back problem is in a totally different pain situation that I more or less can handle. But this spasm Is totally hopeless, cause It's naturally impossible to avoid what causing the spasm, drinking and eating.

This is the reason why I starting my blog, to scream out in frustration and hopefully there is somebody else that have experiences about spasm that could help me live my life with dignity. And of course after all I now know a lot of thing about the different chronicle diseases I have, and I hope I could be at help for other people that have any of my problems.