5 Hospitalized

Alexandra is hospitalized and currently at the ICU (admitted 27. December). She will explain the situation herself when she is is capable of it. Hopefully it wont be too long before she will get discharged.

2 Christmas eve in Norway.....

Rib Christmas dinner

For me in Norway it is the evening before Christmas eve...
In my family we eat rib roast, the meat is grounded one more time before the meatballs are fried, as are the sausages that are extra thick, sauerkraut, red cabbage, potatoes with parsley, and cloud-berry cream for dessert..
But in more resent years my mom and sister has began to make another meal: pinnekjøtt.
On top of that my mom loves rice pudding, so she makes that to.. I could have sworn she was feeding half of Africa population...

Pinnekjøtt

Isn't that always the problem when to people create their own family, their holiday traditions crash!
so how do we solve it, where goes the compromise?
for me rib roast and Christmas tree smell gets me in a Christmas mood. I don't like rib roast all that much, I always get exited over the meatballs that my mom make, half ground beef, and half ground beef grounded on more time.. They are absolutely amazing. maybe because I only get them once a year!
The pinnekjøtt smells awful,like foot-sweats smell on steroids...
My favorite se she knows how much I love it.


We also opens the presents on Christmas eve. We open only one at a time so we use hours to get through it all. But Christmas eve is the one day a year my mom says; we don't have to rush. Its the one night a year we slow things down and just be together..

Cloudberry cream

We also go around the Christmas tree every year. And thats fun, and very nice to move you're body after that heavy Christmas dinner.
We have Christmas booklets with all the Norwegian and some foreign song, translated into Norwegian.
So we tend to take a verse of the most famous songs, and it's always fun, especially after a few glasses of wine, beer and aquavit... And if it start to become a winter wonderland  into the evening, its alomst like you are looking at a painting in motion. Its breath taking, and making me appreciate our climate, even though some will say we live a in a cold, almost harsh climate.

Rice pudding

But you got to love the good as much as the bad.... But tomorrow I want to be in the present, who knows what will happen after that...
happy holidays....

0 Merry Christmas and more.....

ho, ho ho.. I wish you all a merry little Christmas, Hope you will surround yourself with those who matter to you, and not what...
The saying : "in the end, all you have is yourself" is a load of BS.... Every where you go ,everything you do is based on someone helping you. teaching you to read, talk, flying you to your destination, cleaning you're room, giving you a job, approving you're loan application, making the food you eat and the clothes you wear.
You don't live life alone, you're life is a world turning, and you are the

4 Healtcare, bureaucracy and capitalism, what a unstable melting pot

When is pain no longer manageable?? How much pain should a person endure to get help?
Can you really be honest with you're doctor? What do they see when they see a person with chronicle pains?? hypochondriac, junkie, psychosomatic, anxiety? Do they see the person? really see them? or do they just look for the easiest diagnosis??
I have been on pain meds reduction for 2 weeks, the first day, didn't feel it, but when the bad days came it was harder than I have had in a long time. the good days became the days in the middle and the bad days became a nightmare..
So my dilemma is: If I had called my doctor to soon he would have said I had to give it a try before I can say it didn't work, but buy waiting I could establish a pattern witch for me gave me a lot if insight in pain patterns, but then the doctor can say, but you hang in there so we sill call it a success and keep going with the reduction in pain meds...

So what do you do, when all you're choices will get you the guillotine?
The almost funny part is that I don't want to use meds if I don't have to. It was the side effects of drugs (Voltaren®) in the first place who got me in this position I am in today. But as long as they don't treat my primary conditions, I will never be able to get of the meds, no matter how much the doctors tell me to toughen up and get through it....
It is time to actually take time to address these issues. No medications are only  beneficial, all have terrible side effects, but sometimes the pro outweighs the risk. So why are opioids so stigmatized?
Someone will always abuse the system. but that will never change, and they are few, and those you need it are many!
It can not continue to hit people who have massive medical problems! They need support, sot suspicion!

There is a problem when the government owns the hospitals, but try to make money on it, as long as we have free health care, there will always be a money drain for the government.
We must also begin to see humans, not get bureaucracy mixed into the healtcare system. Efficiency in the health sector will be health care downfall, because when people are working with people,you cant stir the capitalism into the pot without catastrophic consequences.
Should we execute all the sick people in Norway to earn back the money that the health care has cost the Norwegian government?

I get dark when I am in pain, but I also alow myself to ask the nasty questions, all the questions you dont want an honest answer on. because sometimes you need to try to make reasons on unreasonable actions from those who are sworn to do no harm, and those representing the people in the Parliament...

1 I want everyone to be blessed with what they need, not what they think they want...

I have all thees dreams I want to realize; being a teacher, creating and organization helping people who have esophageal diseases,support groups, volunteering for the red cross, starting boutique where I can sell smart interior.
I have come to that realization that I need to help people. I am happiest helping others, it gives me purpose, and I am selfish that way, I want a GOOD purpose for my life!
When I was a homework teacher. I swear, that volunteer job didn't pay anything, but that gave me more,

0 My perfect/imperfect life

I wanted my blog to be a positive educational blog with honesty as the core. Its not easy. I don't look at my self as jealous person, but it hasn't been easy lately.
In Norway a driver license cost about 5000 $, So after high school I prioritize education an traveling, and I don't regret that.
But a few years before all this started I really wanted it and I saved for 2 years to get it. then I became ill, and now I cant take it because of the medication.

Before it didn't bother me, but now everyone around me has it, and they live this high pace life with traveling, good careers, family, children and their own house, car etc.
I feel left behind.
People call me when their are in trouble or if they need some guidance, but all the happy events, I am left out of.
Like my presence is souring the event. And thats hard to swallow. Just because I have been through hard things doesn't mean thats all I am. I can be glad for other people. But when you are left out of the loop that gladness turns to resentment.

Why me? Why couldn't I get just one thing on that list? Why do I always pick the short straw in life?
It is fate in its cruelest way, flaunting at me everything I cant have?
Why do I always have to swallow it, be the better person?
Why cant no one understand my grief? understand that living with extreme pain everyday will knock you of balance?
I sometimes think that people would have liked it better if I had died,than they could have this glorified picture of  me, rather then to see the changes that has come because of all of this... How can I stay the same after everything?

But isn't that life? every event, every tragedy, loss, love, friendship, family, work changes who we are constantly through out our life, the only constant is that things will always change.
so the question is embrace it or fight it??

0 2 YEARS...

This is where my blog saw the day of life, in bed in a hospital where no doctors had any idea have to fix me. It was the first picture that was taken for what was to become Life with dignity!!!
Even though I am in hell I feel blessed.
This blogg has been a platform for my rage, sadness, fight and resignation for my illness.
I have been able to do research on this subjects and share them, hopefully to someone who has needed it.

My love and tanks go out to those who have followed me, given me hope in hopeless situations, and my 1 goal for this blogg was to reach out to sick fellows and If my pain could help at least one then it would have all been worth it. And I have, so my goal has been reach.
So what will be my next goal??
I was afraid of my honest forthright that some would not like what I had to say, but the truth hearths sometimes even if we don't intend to.
By trying to help others I have helped myself, and I must say thats have surprised me. I think so much about others that even in my darkest hour I would rather help someone else than me.
But doing what comes natural to me, I have given myself the biggest gift : HOPE.
Hope that I might find a weird way to coexists with me many illnesses. A way to have a meaningful life in all tha chaos. To make a difference.
Working for the red cross gave me more than I think I gave them, somethings in this world cant really be bought with money:LIFE EXPERIENCE.
Life experience has made me a young/old women. to much baggage in th wrong place. But we got to work with what we got eh???

So thank you for giving me the strength to write this blogg in my best days,my worst days and all in between.
I have learned so much about humanity, patience, care, compassion and empathy..
My hell has also been a salvation, finding a road in the pitch black dark. would I be me without the worst ting that has happened to me?? I am my biggest obstacle, but also my strongest card.
To use my weaknesses for good and don't let my humanity get the best of me, bur use it to get me out of hell.

I hope my blogg will keep on for years to come, It has become my road map in and out of this hell, and I hope it will be for years to come, This is a lifelong journey, and not just a slope outside the road.

The slope off the road is my way now, it is a little more rural and difficult to navigate, but I have hope that one bumpy road is better than no road!! So I hope you will keep following my slope road into the future

6 Survival of the sick Vs. the healthy

Why is it that when something bad happens people need to sweep it under the rug?
No one wants to be around sick people to long, its like we are making the environment toxic.
People like you to talk about you're illness to begin with, I think that has more to do with curiosity, we like to be in the loop..
But if there aren't any progress people want to forget how fragile life is, how you one day can be healthy, and happy and the next day, seize to exists.

I feel people are starting to forget that I am sick, it feels like their faces are saying: like deal with it, don't talk about it, and if you try really hard maybe you will just forget that you are sick. I have!
I have never read an article in a magazine with a person who are

2 Maintain the rights of patients, not just for the doctors!

I have felt like a helpless person in my fight against "the system".
I say the doctors aren't the problem they are the symptom. The problem is higher up. they let the doctor do what they want without repercussions. And the patient isn't the main focus anymore!

Did you know than when a doctor wrongfully treats a patient, they will always consult with a lawyer and their trade union so they find a medical formulation so that the doctor will not be held accountable?
It is a type of camaraderie between doctors, the health care and the different public offices in Norway.
In 70% of cases the public offices win, does that ensure the patient rights?
In addition, wrongful treated patients is not recommended to get a lawyer

0 Discontinue of pain medication....

http://www.thefprprogram.com/

I have lived on a double-edged sword for a long time. hoping that someone/anyone would hear me cry for a better life. But I am not being heard.
My pain doctor at the university hospital says one thing at my consultation and end up writing another for the medical history.

They have now backed down on every promise they have maid. No qutenza, different medication, 2-opinion, acupuncture, and now discontinue of pain medication!
They have said they will only keep my as a patient, if I do everything they ask.
And they know what they are asking, I will not be able to do. How f&#¤et up is that?? Making me the bad guy, the quitter so they can have clean hands and a clean "conscience".
So the 22 of November they are starting to discontinued pain patch over a period...
My doctor said: It will hurt like crazy for up to 10 years

0 A BLOGG

I know, the 1 rule of getting a lot of readers on you're blog is to be happy, enthusiastic and positive.
I don't have that many happy days, and cheerfulness over  a new lip gloss or the new fall line as the pink bloggers.
I dont post 3 notes a day, and when I write I want it to mean something, feel my emotions with me.
Me, my life has been pretty dark this last few years, but to have this blog has been a savior, because i can let it all out, raw, damaged, painful and sometime a good day...
My mission in starting this blog was that I wanted to reach

0 Multidisciplinary meeting

I have for a long time felt like a burden to the health care industry of Norway.
This week my doctors, psychologist and physical therapist had a multidisciplinary meeting.
Of course the doctors at gastrolab didn't even show, they had nothing to say, nothing new there.
I had hopped that they would have come up with a few brilliant ideas...
For me that State University Hospital at all agreed to this meeting was a surprise. It's something we've been trying to get for several years. but perhaps we should be glad that it happened at all.
My physical therapist said that the doctors sat and gaped

0 Existimo ergo cuncta tueri debeo suus

"I think, therefore I am ". Does this mean that we are superior?
Do we really know what other animals are thinking? just because we can't communicate with them doesn't mean that they don't think.
Descartes may have come up with the phrase that have stuck

0 The lifecycle of a phone...

My dear old HTC phone, has lifespan has come to an end the last few months.
Phones has the life expectancy span of a butterfly. Can it really last more than a year? Its not about growing old together, being there through bad times and the good  times anymore. I remember my first phone (Alcatel One Touch), we were like best friends, and I loved it, and hating that I had to remember the phone number to those I texted, But I was just happy that I had one.
The life span of my new, old HTC desire has been accelerated into a bratty toddler who doesn't want to do anything, just freezes and stay there. doesn't want to cooperate at all.
The next month it has become a teenager. Its starts to ring my ring melody for about 10 seconds

0 Please doctors, begin to smile....

Olsen, a frp politician said on his blog that while there were only approx. 1900 new FTEs with doctors, it was three times as many bureaucrats in health care system.
In addition did VG report in 2009 that in total  there were more bureaucrats than doctors employed by Norwegian hospitals.
This is what I have felt for a long time that doctors

0 Rule of Law, then my law...

Means predictability, fairness, equality and impartiality in the proceedings.
universal principles of fairness, morality, and justice that transcend human legal systems.

I was at my Lawyer today. And that was an interesting meting.
He told me that because NPE has made rulings about my medical disability by phone, that this is in volatilization with rule of law.
I don't know what they talked about, if NPE was leading the doctor or "asking" the right/wrong questions.
But in our outstanding society is that there are nothing you can get them on, because I am not entitled to compensation if they have violated my rights. At least not through NPE.  horrendous if you ask me, but who ever asks a patient?
That means they can do whatever the hell they like, and if the patient/lawyer

0 Few shouldn't fight alone, or be left alone!!

I read this article that a girl who had gotten Cancer, said that since she saw this as a national disease,and  that everyone should get operated within a day, because the wait was the hardest.
I thought not having a diagnosis is the worst , closely after post op pain, chemo, and radiation treatments??
The other thing was that this should be top priority because so many got Collen cancer a year.approximately 3600  in Norway alone, and on top of that came family and friends, the whole network is affected.
I will say that with the patient alongside the network and the Cancer Society, thats a lot of people fighting you're fight.

I dare to say that a person with an unknown or rare disease or mutation needs more backing. No one will fund research

0 Why medicate, if not propaply??

My sense of my world is going into turmoil.. My transdermal patches wont sit properly on my skin and do its job. It falls of more times than I can count, and I have tried everything to get it to fasten.
But when I but a plastic film over all it does is mask the problem so when I take it on, only the plastic sits tight on my skin.
I have also been to the State University Hospital, to get another adhesive to try and

0 Naive or hurt or poetic ?

Have you ever had one of those days? weeks? Where everything seems impossible??
In Norway we say its getting out of bed on the wrong leg.....

0 Am I worthless???

I have always said that you have to look back to see where you are headed, and that every experience, shape you into who you will become, but sometimes it gets you to a place you don't want to be...
I say that i don't dwell on the past, and only want to look ahead, but thats dam hard. My psychologist say that only should use my past to help me shape a new future, but even though I know that this is right, I go back.

Wanting to make different choices, see the good, rather ten the bad. see light instead of darkness.
But can you really see the roses if you haven't seen them at their worst? can you smell the fresh air if you haven't breathed in polluted air??
Its easy, saying no regrets, its harder to mean it!
I want my personality to be perceived as a nice, empathic, good listener, who are there for those around me.
But the last years I have felt like I am more of a burden, people are tired of me being sick, not moving forward, and snap out of it. So why do I care what people think of me, if all I am is negative baggage??

I have said many times that I am not my illness, I don't address it if no one takes it up, but still I feel that all everyone see is a lazy girl who need to get her act together, and thats the hardest, having several illnesses that no one can see, relate to. How can you be empathic if you have never felt pain??
How do I live with something no one wants to see? something I cant turn of, but desperately want gone?

Why should sick people hide their illness, when others can have their problems or successes out there in the open? If I had done everything thats "expected" of me, it will still not be enough, because as long as I am sick, I am worthless to society, and worth less than a cockroach.