Monday, November 29, 2010

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?

Saturday, November 27, 2010

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!!

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.