Friday, November 26, 2010

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.

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