0 Health system and medication

Before November 2010 I was more or less green, in other word didn't have much knowledge of the deeper part of health care. During the last year I have learned a lot, especially different medical challenges and how to solve them in a best way (of course from a doctors view).
By challenges I mean in this situation how to kill the pain, and of course by all mean how to try to cure the symptoms itself.
I don't know how many times I have fought for Alexandra to make the hospital believe her pain situation(s). For a doctor that says she shouldn't have pain she got after the last botox, and just to then think about sending her home, like the situation October 2010, it's a unbelievable and a surrealistic situation when I look back on it.
Just to mention all the withdrawal plan they put on her, because they were always was thinking it was just withdrawal symptoms. And of course all the withdrawal plans that never worked the way they thought, and as a result of a all the failed withdrawal plans, there is a countless number of times she has been screaming in severe esophagus spasm pain for many days just because nobody really believed her situation. Can you imagine? Just think about lying in a bed screaming of pain in a hospital?? The only place you are supposed to receive help, not get "tortured". All the different meanings from different doctors and nurses; one day a doctors says OK for painkiller, next day another one says: no way, and so it went. For a patient to experience this turbulence, is a really mental burden. Like you don't have enough problems before, you are sure to get mental issue too. For me me to just be a support for Alexandra in this chaos of decisions was a really challenge, and a huge mental burden for me too. And there is a huge different between the need for being pain free and the need for the medications itself. For Alexandra all it was and is about, is to be pain free, regardless what she need to take or have to do.
The best metaphor I could give to tell the extreme pain situation Alexandra was in, is the eyes of an animal that are being attacked by a predator. This metaphor is the same look Alexandra had right after the botox in October 2010, her eyes contained a look with pure fear that looked right through me. Quite shocking for me, and a image I never will forget.
And with all this situations I have learned the doctors, and of course some nurses how they think:


It is easier to give forgiveness than permission

What I mean with that, is they never give permission at first, but if they try something we all know won't work, it easier to give forgiveness when they realize it didn't work.
I have made two flowcharts that symbolize my point of view how doctors are thinking regarding painkilling medications, and how they should be thinking. ( click on the image to make them larger).This is of course not scientific made.

This first one is how I see/saw them thinking







And this second one is how I would like them to be thinking








I have learned a lot with both the painkiller itself and pain situation. And of course both should be threated seriously and with respect. Painkiller are by all mean nothing that should be used excessively, nor shall be underestimated, thus not be used too little based on the situation. A serious pain it's a living hell, and I could tell if I had the pain Alexandra have went through, I wouldn't worry the other side effects. Seriously when you are in pain you can only think about until next minute, maybe hour or at best to next day, what happens next month or so is unrealistic in a pain situation.

About the painkiller itself I have to my biggest surprise learned and recently read that all the non opioid medications inflicts much greater damage to the body than opioid medications. The greater risk (that we all know) with opioid is addiction, but non opioid has huge risk for liver damage.
Like from the Norwegian newspaper: (I guess there is other places you could find similar information regarding this risk)
Translated - original.


I have also read how a good treatment with stronger medications is a better long term solution for strong pain than use medications that metabolized in the liver.
This is quite ironic for me based on what I been through as a relative to Alexandra.

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.

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

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