The last year, since October 2009, has been a real challenged for me. To be a relative to one with such subnormal situation as Alexandra, is beyond all imaginations. The whole last year has been a fight for her right, and fight for getting her sufficient painkiller.
To fight at system as a relative that are surely wrong, or doesn't see the whole picture, is like the old bible story: David and Goliath, you are sure fighting a battle that you aren't meant to win.
I have learned a lot the last month what esophagus spasm really is. I have spent many hours reading articles, forums etc. So my knowledge regarding this topic is beyond what the general knowledge of doctors here in Norway know, or probably most of the doctors here. And for a doctor that knows he or she has less knowledge than a relative for a patient is really provoking for them. And that is one of the things I find really stupid, cause why can't doctor (and nurses) collaboration with relative. There is so much professional pride in the health system, especially here in Norway. Which leads to unnecessary use of energy.
Anyway, to be a relative to one with esophagus spasm is also very challenging. I never know when the spasm appear, and how strong they would be. I also know when Alexandra get those really strong spasm, she is totally paralyzed because of the pain. This means I have to take action if she is so sick that she has to go to the emergency room, or if she would need botox, etc.. So I have done a lot of the administrative work; like contacting a lot of people, while she is sick, and I could say it's a huge task and very time consuming.
My experience regarding either her back pain, reflux decease or her pain after lung surgery, I would say she had more or less control of these deceases in contrast with the spasm. From my point of view the reflux pain is "easier" to understand what causes the pain, like in her case eating spicy food etc. which lead to serious(!) pain in her stomach. But we both more or less knew why she would have pain even tough it was really painful. With proper diet, she was spared much trouble.
She is not in control of this spasm situation and I can't do anything to relive the pain. Everything seems so random at this point and that is the most frustrating part. Sometimes I could almost wonder if there a person somewhere with a voodoo doll that looks like Alexandra, and stick pins in her throat at random times.
So to have problem in the digestive system, leads almost instantly to a disabled condition. And this effects not only me as a boyfriend, but the whole family.And like the phrase for x-files "the truth is out there" , this is what's driving me further to find answers for this kind of decease. There has to be an answer, or at least something to relief the spasm and/or pain..
If you as a relative has some tips about dealing with the situation, or maybe how to find some answer to this illness? Or otherwise, ask me if you have any questions.
Sincerely
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