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.
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