Monday, March 26, 2012

0 Patient Ombudsman

I have the last months been in contact with the patient Ombudsman to see if they can help me with my rights.
They have been in contact with a specialist in esophageal cancer because my diagnosis is rare, and he has worked with this for 40 years.
He came up with the same conclusion as the NPE that I never should have been operated on at all. He said from my journal alone that you could see the subtle signs of something else than GERD.
The fact that Nexium  didn't work proper in high dosages, and that I was in pain. In a lot of GERD patients the pain usually gets worse with food and not random.
He meant my doctor should have followed the symptoms for a longer period and taken several manometry to rule out any underlying esophageal dysphagia before they had recommended surgery.

I must see the conflicting diagnoses as what I have always said: Doctors will not agree, everyone has their opinions, and and they are right (each doctor).
Its a little life philosophy, as long as you can argue about something, you are not wrong. the truths maybe bent a little, but they cant be catch in a lie.

Anyway, now they are going to look at my rights and see if I can get TREATMENT in another country, for Norway will never be the center of the universe when it comes to health, and treatments of illnesses that are a little rarer than bad backs and sore throats.

Thursday, March 22, 2012

0 Acceptance 2012

If you are sick in Norway, you are seen as lazy. If you fight, you are living in a fantasy. If you give up, you can just as well roll over and die, because then there are no use for you..
And if you try to be a part of the workforce, and fail, you are week, no backbone.

Why do we label sick people like this?? aren't we human? Do you  think that anyone wants to be sick?? Would you rather be sick, stigmatized or work and feel part of the community??
I know my answer. hell yeah. I work my ass of for a future that may never come. I dream of a live that is slipping away. I love, I cry, and I celebrate those around me when they do something good.
But who celebrates for the sick? who gives them a boost to keep going?? Where is the understanding??
We say we are a united people, but we are not. we are selfish, little greedy people that care only about ourself.
I am that way to. I think my situation is so much worse than everyone else's, but who am I to judge??

Al those happy updates on facebook, are they happy?? or are they crying when writing it, to scared to tell the honest truth??
I hope we can learn to accept each other, because otherwise we are doomed to make all the same mistakes again. If there is something history has thought us is that we never learn, we say we do, but we don't. Its just in a new rapping.
Just because something looks right doesn't mean it is.And a wrong dont make a right.

Tuesday, March 20, 2012

0 After new years.... right????

My doctor at the State University Hospital told my family doctor that they would have see me more often and work faster for a solution to my problems, and that I would get a new appointment right after new year.
I called today to ask if they had forgotten me or something, because it has been over 3 months since I had been there, and usually I am there every 3 months. I got a date 17 of April(4 1/2 month since last time), so more helps in Norway means less. they said I was high priority, so how often goes the low priority, every 3 years?? No wonder people are on sick leave long in this country!!!
  If the waiting list on the pain clinic is getting longer, you have to build it out more, not down. They have enough patients to be open 8-16 every day, not 8-12. 
Second I was suppose to get this new treatment on my lung scar that was to begin in December 2011. Today they told me that the procedure hasn't started yet, but only after I called and asked why nobody had gotten back to me??
That was part of the excuse for not getting an appointment, I was on a wait list for a procedure that hasn't started yet, so then I didn't need follow-up on my other problems before that, but when this treatment is starting knew her little about. So if I hadn't called I wouldn't have gotten an appointment on god knows how long.
Health care on its best.. You have to love capitalism and politicians and economists that running public health care right in the ditch. Almost wonder if it's on purpose to get privatized health care, nothing surprises me anymore..

Monday, March 12, 2012

2 I hate doctors and byrocracy

My road is collapsing, and instead of rebuilding, the water carries it away, and I feel helpless on the sideline with no way of fixing it.
The doctor who operated me, he was the one to say how much my medical disability is. and he says 50%..
I am in complete shock.
How can the doctor who ruined my life be given the job to say how sick I am. he knows nothing of my problems today.
The specialists at Country University Hospital says that I am 100% disabled.
That can actually means that I might have to work 3 days a week. how can I do that when I don't know when that 1 good day is..
I have contacted my lawyer because I am not giving up.. As I said to my family doctor, I have tried go go to school the last two years, it doesn't work, its not like I am trowing in the towel after two months. And I dream of having a life again, but as it is now, I have non.
And the doctor who operated me said that there isn't any good treatment yet, so how can he think that I can work just like that. They meant many with my pain are 100% in work, but no way I belive that. I know a few that uses less painkillers than me, and they are a 100% disabled.
I am not saying that the medicine determine how much you can live, but we are all different. how many deceases do I have to have before they belive me??
Do I really have to work so far over my capability and become hospitalized for 2 months so they can see that I am still in a lot of pain??
And since I never know when I get a spasms, I cant really have a consistence work schedule. and if I cant finish school at 50%, how am I suppose to work??

When you go to the doctor I take painkillers so that I can talk and say what is needed to say, but maybe I need to crawl into the appointment so that they can see how "good" I am doing.
I am tired of this constant fight to get what I need..... Why cant I have one good thing to hold on to for more that 2 months? and then its back to hell.... one way to start the week....

Monday, March 5, 2012

2 To much at once

This few weeks have been so hard. my grandmother was hasted into surgery, because they found a tumor in hel colon. it was so big that she couldn't go to the toilet. but she is the most strong fears little woman I have ever met. And she has so much empathy for other. When I visited her at the hospital she was more worried about me.
I got to talk to her before the surgery because we didn't now how it would go, but she was comforting me. I cried the entire time. As I have said before, I have never really lost someone in my closest family, and now I am coming to the understanding that I will loose some of the people I love, and I cant deal.. I feel my emotions is in crisis,fog mode. I am here, but nor really...
Tomorrow we get the news if her cancer has spread to other organs, so my pulse is through the roof.. I love this sweet hard headed woman so much..