1 I want everyone to be blessed with what they need, not what they think they want...

I have all thees dreams I want to realize; being a teacher, creating and organization helping people who have esophageal diseases,support groups, volunteering for the red cross, starting boutique where I can sell smart interior.
I have come to that realization that I need to help people. I am happiest helping others, it gives me purpose, and I am selfish that way, I want a GOOD purpose for my life!
When I was a homework teacher. I swear, that volunteer job didn't pay anything, but that gave me more,

0 2 YEARS...

This is where my blog saw the day of life, in bed in a hospital where no doctors had any idea have to fix me. It was the first picture that was taken for what was to become Life with dignity!!!
Even though I am in hell I feel blessed.
This blogg has been a platform for my rage, sadness, fight and resignation for my illness.
I have been able to do research on this subjects and share them, hopefully to someone who has needed it.

My love and tanks go out to those who have followed me, given me hope in hopeless situations, and my 1 goal for this blogg was to reach out to sick fellows and If my pain could help at least one then it would have all been worth it. And I have, so my goal has been reach.
So what will be my next goal??
I was afraid of my honest forthright that some would not like what I had to say, but the truth hearths sometimes even if we don't intend to.
By trying to help others I have helped myself, and I must say thats have surprised me. I think so much about others that even in my darkest hour I would rather help someone else than me.
But doing what comes natural to me, I have given myself the biggest gift : HOPE.
Hope that I might find a weird way to coexists with me many illnesses. A way to have a meaningful life in all tha chaos. To make a difference.
Working for the red cross gave me more than I think I gave them, somethings in this world cant really be bought with money:LIFE EXPERIENCE.
Life experience has made me a young/old women. to much baggage in th wrong place. But we got to work with what we got eh???

So thank you for giving me the strength to write this blogg in my best days,my worst days and all in between.
I have learned so much about humanity, patience, care, compassion and empathy..
My hell has also been a salvation, finding a road in the pitch black dark. would I be me without the worst ting that has happened to me?? I am my biggest obstacle, but also my strongest card.
To use my weaknesses for good and don't let my humanity get the best of me, bur use it to get me out of hell.

I hope my blogg will keep on for years to come, It has become my road map in and out of this hell, and I hope it will be for years to come, This is a lifelong journey, and not just a slope outside the road.

The slope off the road is my way now, it is a little more rural and difficult to navigate, but I have hope that one bumpy road is better than no road!! So I hope you will keep following my slope road into the future

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!

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?

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?

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.

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.