Life with dignity

Hospitalized

noreply@blogger.com (Birch) — Mon, 07 Jan 2013 12:58:00 +0000

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.

Christmas eve in Norway.....

noreply@blogger.com (Anonymous) — Mon, 24 Dec 2012 02:52:00 +0000

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....

Merry Christmas and more.....

noreply@blogger.com (Anonymous) — Fri, 21 Dec 2012 01:22:00 +0000

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
grease that makes it go round, because if you didn't buy that food, or that ticket, then those people wouldn't be able to live their life..

We are all connected on a basic level, we cant survive alone, we are pack animals, social beings, and there is nothing wrong with that.
Isn't that why we are always talking about natures way.. because many feel they have lost their way? Or wanting to rediscover it?
All I know is that Christmas, Hanuka, Ramadan etc reminds us about traditions, culture, our way of life and the road to death.... But the holidays are about forgiveness, being together,alive, and thinking of those you love that are no longer here.. letting the good memories free flow in you brain like a montage of the happy times you have shared with you're family!

Every year around this time,I think of all those who have it worse than me, so that I can appreciate having a bed, food on the table, a hot apartment and a warm shower. Thats a hell of a lot more than a billion other people.. But still I long for more. but will more ever be enough?? Or is it an obsession of someone who has everything in life but unable to see it?
And every year I hope that more will be just what I need.....

Merry Christmas, and my thoughts hope that you will get more of what you need.... and less of what keeps you from getting to where you dream of going, or need to go but cant see the road :) happy holidays
And I leave you with the only add who has every stuck in me, and Christmas isn't coming until I have seen heard this song. and when they changed it a few years back, I wrote an angry letter, but it hasn't seemed as they took that under consideration :(

Healtcare, bureaucracy and capitalism, what a unstable melting pot

noreply@blogger.com (Anonymous) — Sat, 15 Dec 2012 23:49:00 +0000

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...

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

noreply@blogger.com (Anonymous) — Tue, 11 Dec 2012 03:42:00 +0000

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,
than the people i was helping. It has been my most fulfilling job to date.

And at Christmas time, its so easy to be selfish, wanting material things to give that moment of happiness, but there are so many things we can do to help someone else... That can give happiness more dept, and keep the happiness longer than just a blink in the eye!
We must help each other, not only in the poorest regions of this world, but in our own community. reach out and give a little of you're time, or money so someone else can use more time to help those who need it.

Since I was a child my Christmas ritual is that I have to give money the salvation army, who always stands and collects money by the Christmas tree on University Square. It makes me think of someone else, than just how much I spent on presents and clothes, food and everything else that the holiday makes us obsess about.
It makes me see others, and see how privileged I am, and make that moment about something more than you and me, Its and idea, an altruistic hope for a better tomorrow!

I dream of a future where greed, capitalism, and politics are second to humanity, that everyone will be safe, have a place to live, and enough food on the table,universal healtcare, also education for all, regardless of where in the world you are born, and under what circumstances you came into this world.
We need to think more about all living creature on this planet, not only profit, when all comes to all its always about the 00....(as long as capitalism is in play)

In December (2011) Norwegians used 8.6 billion $ in Christmas shopping.
Can you imagine what we could have done with that kind of money?? that is enough to feed millions, give medical treatments to thousands of sick humans. educate the young so they can get the knowledge to help their themselfs.

I feel lucky when I think of all those who would kill for a bowl of soup. I feel blessed that I don't have a medical bill in several millions of $. I feel blessed that i get disability pay from the government.
I feel blessed I have a home, clothes on my back, I feel blessed I don't have to starve. I have a great boyfriend and a family.... I have everything, while others have nothing.

And it makes me sick to the stomach. I want so much to help, but my health problems stops me from it.
But I can light a torch, opens someones eyes, do what I can with the resources I have.
I dream of the day I can go in and help them myself......Isn't that the spirit of Christmas??

But cant we share the wealth the rest of the year to? Humans starve every month, not only in December.
December only shows us that this materialistic way we are living isn't ethical anymore, it's egocentric at its strongest, we push away our responsibility and pretend it doesn't exist.

If we had spent two hours a week, and taking those hours from facebook time/internett/TV, and used them to help someone else, imagine how much we could have achieved??
But the only way we get there is together.... fewer people have managed to turn around the tide for something they belived in. A revolution comes when people are sick and tired of the political bullshit we are being fed..

For me its all about those humans/animals who don't have food, work, home,clothes and no hope, Thats the worst thing you can do to someone, take their hope......We NEED to get that back!!!

My perfect/imperfect life

noreply@blogger.com (Alexandra) — Mon, 03 Dec 2012 16:55:00 +0000

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??

2 YEARS...

noreply@blogger.com (Alexandra) — Thu, 29 Nov 2012 19:59:00 +0000

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

Survival of the sick Vs. the healthy

noreply@blogger.com (Alexandra) — Mon, 26 Nov 2012 22:49:00 +0000

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
struggling with a illness. Only sunshine stories, miracles some will say. They have fond a way to lead a normal life with a few adjustments, and they always talk like: I wasn't going to let this get me, I am stronger then the illness.

But what does that to us who cant start eating apples, or take up ceramic and 2 months later everything is better than before you got sick..
For most of us we have to live with the disability and a life that chronically illnesses causes -Pain!
Most of us are no more happy than physically healthy people on the happy pill.
Being chronically sick is not life-learning, it does not make you more aware of all the magic in the world.
It sucks big time, and it is an long process to accept it.
The first day after I realized that this was not going to go away, I didn't walk to the mirror and said to myself, you can do this, you will have a normal life.
I cried, curled up in a fetal position and felt that the world was shattered, dreams disappeared and not a single person around me who understood it. They were just relived that I got to live, they didn't think what kind of life I would have!!!
Its going to be okay, its suck a standard phrase in health care sector, but it doesn't always end well!.

And we who don't get to live with a sunshine story, we need people to show us that we belong.
Someone to say :You are not alone, what you are thinking is normal, and you are allowed to lock yourself in you're mind for a while.
Mourn what you have lost, remember what you have accomplished: and give yourself time to accept what has happened to you. You also need to be allowed to create new dreams without anyone judging you for not following the treatment plan set by Norwegian Directorate of Health..

We are all different and we need to do things at our own pace, without being judged for being difficult, hysteric, psychotic, resolute, manipulative, optimist, suicidal, fearful, stubborn or tongue-tied!.
We are humans, we react differently, and there must be room for us all.
For when it comes down to survival, the only person who can save you, are yourself!

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

noreply@blogger.com (Anonymous) — Wed, 21 Nov 2012 14:43:00 +0000

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
because this is not "necessary".
And to file a civil lawsuit, you must pay for expert testimonies, approximately 6.000 $ per specialist. How many sick people can get that sort of cash in a few weeks notice? And thats on top of the expenses for a lawyer.
If you are sick, you often have a reduced income and increased expenses for medical bills, medicines etc.
So is becomes a David vs Goliath paradox.
Doctors have the government backing them, and covering their expenses for the experts testimonies that they need. They have the best lawyers working to win.
It seems to me winning has more to do with who can use the most resources on the case then what the law says. Why else do they win so many of the cases, even when there is proof that they have broken the Patients' Rights Laws ???

I understand that physicians shouldn't lose their right to practice if unfortunate things happen that no one could have predicted, but when it happens repeatedly, and a pattern begins to form, then one should be held accountable for it.
You have to be held accountable for you're actions in other profession, so why shouldn't doctors?
It seems that in Norway you have to sexually abuse 16 patients before you lose the right to practice medicine..

In addition, there is such an arrogance among many doctors as if they are untouchable.
They can do what they want, say what they want. and if the patient disagrees, then it's the patient's fault.
If they fail to find a treatment then the patient (me) suffers from one of this things: withdrawal, addiction or psychological!
Its a little baffling to me that if the doctors cant find out what is wrong, it is the patients fault. It can't be that they haven't find the right diagnosis, treatment, or cure? And why are doctors incapable of saying: I don't know, we don't know how to help you at this time? anything is better then feeling like you have done something wrong!

When did this era start where the patient have to convince the doctor what is wrong? rather than the doctor finding out whats the matter?
I have to find medicines, and treatments on the internett and in medical journals and sending it to my " specialist". shouldn't he know what medicines are out there and what they are used against?
And one the other hand I am psychotic because I don't trust, or belive they know everything? I know they don't know everything, and they have almost killed me, and ruined my life, if thats psychotic, than I am a lunatic hands down! But so are thousands a thousands of those who have been wrongfully treated, so maybe they should start building a lot of mental hospitals, because we are growing in number every day!
Isn't that what they teach you in medical school? Or do they have classes teaching you have to be arrogant, condescending, and how to lose you're humanity, empathy and understanding before you can get certified as a doctor??
I wish I could go back to the place where I belived that healtcare didn't judge, where their one mission was to give the patient the best care from A to Z. But the cold reality is thats its all about the 00s: Money,Statistics, and numbers..

Discontinue of pain medication....

noreply@blogger.com (Alexandra) — Sun, 18 Nov 2012 07:24:00 +0000

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
but after that you're pain receptors will adjust and you will feel better.. Is he insane?? How can a doctor who runs a pain-clinic have so little understanding of chronic pain? Who can live in excruciation pain for 10 years??
I have to keep going to a psychologist an physical therapist, thats part of the plan I have to follow to get no help!
But with no pain medication I will count going to the bathroom a win. What kind of life is that?
Is it about using no pills but having no life, why is it worth living if living is worst then hell? I though this was about giving me a chance to have a dignified life??

But every time I take it up I have always heard wrong, misunderstood them or taken things the wrong way. Why is it always my fault? Why do I have to take the punches every time?
I thought I as a patient had the right to know what treatment I am to be given? My pain doctor said no reduction at this time, so he meant that day? because the next day he had the opinion as reduction was the only way.
Whats more disturbing is that every time I have been put on a reduction or discontinue of pain medication, hes name is on the medical history, and his reduction is far more aggressive than what other doctors are recommending.
Is he really impartial? I feel he has no shred of sympathy for me, no understanding.

Why is it when a doctor recommend an operation and I do not think thats in my best interest I have the right to say no, but when a doctor will cause me immense pain through discontinue of pain medication I must do it. I have no right to control my own body when I know that this treatment will lead to an agonizing hell that no one can begin to imagine how painful it is??
I thought the doctors mantra was: “do no harm”

Whats wurst is that everything I have been fighting for the last 9 months, down the drain. I started to get a glimpse of hope on the ok days, and starting to dream of a functioning life. All that digging into the core of my painful memories, exercising even though I sometimes don't know how to get through the 45 min. but I didn't give up. I kept fighting. If\t feels unfair. I could have laid down, given up, I know I was close to doing that sometimes, unfortunately thats not in my nature!

Why do they only see the drugs? If all I wanted was the drugs I would work, and buy it in the illegal marked Thats better then being locked at as a person fishing for pain medication. Why drag myself to the mud to get it? Wheres the humanity in all this? Why do I fight for a a treatment if all i want is the drugs?
But right now the drugs are my only life line, how would you feel if someone took away you're chemo in the middle of a treatment because it literally kills you're body? Whats the alternative? whats the lesser of two evils?

It doesn't really help when you have Agliophobia. My anxiety bursts into panic attacks and I feel like drowning. But to give my psychologist time to treat that so maybe this reduction would be more successful is out of the questions: Do doctors think that 2 secessions with a psychologist will make you better?
People with psychological diagnosis goes to a psychologist for years, not weeks.

Why have a multidisciplinary meeting if they don't work together? Was it joust to legitimate a reduction plan. For me, this was a joke. the outcome of the meeting was no treatment at all, except discontinue the meds!
It strengthen my believes that the health care system in Norway is broken. And that doctors either have lost their humanity, or the bureaucrats are dictating what the doctors need to do.
First they protect the hospital from liability, then the doctors so there wouldn't be a liability question, and then last they will maybe help the patient it that can give the doctor a ego boost, advance their career, or help them get research fellowship.
But if they get a patient with an easy fix or with some rewording risks, they will do what ever they can to kick you out. I have already experienced that one time, and now it seems to be happening again.
Do I really make doctors feel this incompetent? Is that why they are always blaming me for everything?

My life is on a collision course, and I have no way of stopping it. I want to get of, but to get of I have to give up life. I fear life without painkiller more than death, but I want to live, have my dream come through for once.
Is it to much to ask to live a life on 20% ?? Do I demand to much?? Is it my fault? Am I the liability?

(I just wanted to thank FRP for borrowing their pain monster banner. They do a lot of good work for people with chronic pain, and giving pain patient tools to deal with it, check it out : http:/www.thefprprogram.com/ )

A BLOGG

noreply@blogger.com (Alexandra) — Mon, 12 Nov 2012 16:46:00 +0000

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
someone else, maybe get them to not feel alone.
Esophagus spasms are rare when it is crippling as I have, but decease is crippling no matter where it is. its a universal, transcending through borders and languages. If you are sick, you can relate.

And most decease are hidden, you cant see them, and thats weird because we talk so much about living with it. But it more believable that you will get a decease that cant be seen that one where you will.
I hope my blog will show a curve where my postings will be filled with hope instead of despair, fulfillment instead of nightmare, love more than anger,pain and loss...
But it should be ok to also say that I am not happy. life isn't a sunshine story, it is life, in its most barbaric way.
I didn't start this blog to make money or to to have 10.000 followers. I wanted the voice of us forgotten, those who society cant help to get a voice..
I hope I have reach someone out there, and if I have this has been worth it. even though I might be on the other side of the world I am still here.. on the other side of the screen.
Isn't that what blogging is about? reaching someone else, paying it forward, sharing our life's, good and the bad? finding common ground, despite of religion and miles apart? Not to feel alone in a world that never falls asleep, where 24 hours in a day is 24 hours to short? internett is where we feel connected, and those who are confined in their homes because of disease. This is a place where you can feel like a part of society again..
What good memories have you got from the internett? One of mine was when I pushed the button, and my blog was created. It felt like the start of an era, of something good. getting my voice out there.
Is there a memory you would like to share?

Multidisciplinary meeting

noreply@blogger.com (Alexandra) — Wed, 31 Oct 2012 18:19:00 +0000

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
when she said how hard I was to training, and that I met up every time and gave it everything I had, and I was eager.
One may question why should anyone else have to say what I already have said ? When will they believe my word?
My psychologist said the same. I show up, work hard, at the office and her home, and that the only right diagnose is pain phobia .
Yes i have anxiety and on the way out of a depression, Things are going the right way, never thought I'd be saying that.
Is actually fantastic to think about. But as my psychologist said, I came in for a minor surgery and came out disabled, there is a transition and a loss you have to work through. Grieve the life you lost as build the life you have been given, or stuffed down you're throat!

Riksen ( State University Hospital ) on the other hand, say I do not fit into the time frame that the bureaucrats has set as a maximum treatment time at the hospital. The word disclaimer has been in my head for a while, but now I feel like that world has come to life!
Their goal to get me of pain medication, a pretty one-sided only seeing the drugs as the antagonist, has been to discontinue treatment at the hospital and I hand me over to my family doctor.
But after much pressure from my family doctor, the pain clinic agreed to treat me beyond the limits set by the authorities if I continue to go to physical therapy and my psychologist.
It seems trite to me, I must stick to a treatment program I have set up?? Had it not been for me I hadn't gone to a psychologist or a physical therapist. why would I go against that now??
So what was the conclusion of the meeting? Pretty much nothing but all the same floating in the opposed to pain medication river...

What strikes me the most is: why has the government set a maximum time for treatments?
I am not the only chronic pain patient who need lifelong follow-up? Why do we continue to put age and money on the same shelf as treatment?

Existimo ergo cuncta tueri debeo suus

noreply@blogger.com (Alexandra) — Thu, 18 Oct 2012 18:02:00 +0000

"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
with the human race for almost 400 years.
I think it should have been something like this: "I think, therefor it's my responsibility to protect all living things". (Existimo ergo cuncta tueri debeo suus)
I think we are arrogant if we presume that we are special, we are nature running it's course, like all things, we live, then we die, but it's what we do in the middle that matters. having children, love, see natures beauty,from the calm seas to the erupting magma, and caring, treating everything with respect and empathy. It's not a human thing, it's natures way. And we should respect it, because one day, we will not be the intellectual superior race, and then all we will wish for is to be treated with respect and not like an intellectual lesser race.
I always say, try to see it from their point of view. How would you like to be forced to live like something you aren't? to reproduce with someone not of you're own choosing?
I no I can't say this with a 100% conviction, because we all may have a glimpse of the "dark" in us. but I always try to understand where someone is coming from, to see there side, to walk a mile in their shoes, or hooves.
I am a philosophical person, I need to understand, and I see connection where no one else does, I say that makes me special, but it can be that I am a raving lunatic.. who knows,, thats what I want to figure out....
And thats what I think life is all about, embracing the crazy, with compassion, knowledge and tolerance sprinkled on top..

The lifecycle of a phone...

noreply@blogger.com (Alexandra) — Sat, 13 Oct 2012 22:57:00 +0000

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
every 5 min for 24 hours, until I turned it of, but you cant really get a teenager to shut up can you, because you cant live without a phone. And when someone is calling you ignore it,t thinking that this is just another power play!
But a teenager becomes a adults over time, mine phone did so to, after we removed the teenage software and installed a more simpler grown up version...
And for the summer that seemed to work perfectly, but at soon as you say that word (perfectly), the phone starts to get senile.
You don't get messages or phone calls, and it forgets to send texts or to leave the telephone number when it rings.
And I can only defend it for so long until those around me don't belive me. They think I don't answer the phone, or forgets to return any call etc.. So then it all boils down to, me or it??

Last week I had to crawl all the way to the store and buy a new phone.
I bought a brand new factory sealed LG optimus 4x hd. And even after fearing I will repeat myself, the screen is huge. I say that every time I get a new phone, when is to big?
I remember at the beginning of 2000, the phone were so small that you almost couldn't write because the keys were so small, even with female hands. It looks a little cheaper then the HTC but after I get skins on and Screen Film Protector, I think this will feel almost the same!
I aways says its not about how it looks on the outside, its all about the inside :)
I am not really a fan of new phones, never has been.
There used to be a 2 months learning time and a manual bigger than the Bible that must be plowed through, until I was comfortable with the new phone. And that was like that even if I bought the same brand.
But now android is basically the same, so it is pretty easy to get into.
My problem is that I hate to have keyboard keys on the phone, I liked better the numeric keypad.
But those days are over... But isn't it always? The world doesn't stop turning just because I want it to...

Please doctors, begin to smile....

noreply@blogger.com (Alexandra) — Tue, 09 Oct 2012 17:39:00 +0000

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
have to answer to bureaucrats and lawyers. Its more about protecting the hospital then it is to help patients!
Klassekampen also reported that the time spent on a patient is falling.
Currently, hospital doctors use less than half of their time to treat patients.
It is remarkable that despite a large increase in the number of bureaucrats in the health sector, doctors must still do more bureaucratic work than previously.

Something is wrong. why called it a health care system if the majority are bureaucrats?
I don't get where we lost our way. We are humans, we should want to help one another, care for each other.
Instead we are throwing people under the buss so we can save a buck. cant we fire 90% of the bureaucrats, and use that money to actually heal people?
I have been plenty mad a doctors over the years, but if I had 3 people with no medical background telling me how to do my job. Then I would also become a grumpy person with no passion for my work.
So for the first time in my blog history, I am giving this one to the doctors, you need to be free to do you're best artistic work so all those in health queues could begin to smile again, and perhaps the doctors to.
Smile is infectious and infection can sometimes be a good thing!!

pic: http://constitutionclub.org/2012/05/28/what-bureaucrats-know-that-you-dont/

Rule of Law, then my law...

noreply@blogger.com (Alexandra) — Thu, 27 Sep 2012 21:21:00 +0000

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
sees it, then maybe they will change it, in that case...but what about the rest?
My lawyer said that if they where to go in court every time NPE did something wrong, then he wouldn't have time to actually help with the current cases, that he was hired to.
This neutral NPE who are there to protect the patients. No they have a quota of how much they can give out, so they will try anyway to get the compensation as low as possible..
One needs to balance everything right, not to be run over by the "state". It feels like little me against the government I am suppose to trust. who I pay my taxes to!

And what I reacted even stronger to was that NPE has put my esophagus spasms as my underlying condition, and not a illness because of wrongful treatment..
They know how to get what they want. And that I was operated for GERD, that has somehow slipped their documents..
This is starting to become a principal thing for me. right is right. Its not about the money, its about someone taking responsibility for what happened. Its about telling the government that I don't accept that this happened to me, and that it shouldn't happen to anyone else.
Of course the money will help, I am not so altruistic that I don't want any compensation for what has been done to me.
But my hearth breaks more knowing that people will have to go through the same as me because the government sees through all the pain they have inflicted in people who belive that they are in good hands.

Who can we trust, If the people who are there to protect their citizens doesn't? You don't have a country without a people......

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

noreply@blogger.com (Alexandra) — Fri, 21 Sep 2012 14:39:00 +0000

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
for one person, thats not a good business sense, and the Health Minister will not have that illness on top priority.
But if you can get 10.000 constituency to vote for you, that will be worth while for the labour party!
Kampevold also says that we need to educate more doctors and nurses, but we need the good ones, not those who do it for status, or money, but because they have a burning desire to help people. TO DO NO HARM!
But the government does try to do this even though she says no. Because my sister just finished a 11/2 year of specializing in cancer treatment, and the Norwegian government pain her entire tuition. Thats what I call funding into saving more life's, and giving nurses a good specialized education!

In now way do I say that cancer is a disease that you should hope for, but it is one of the diseases that are research the most, oppose to other diseases. I think that every disease should be treated the same.
To begin with, belive the patient, they know their body.
Second, see the patient, talk to them, and give them a realistic hopeful outcome. No one will fight if they don't have anything to fight for.
Third, fast treatment, means less sick days = money saved. Restoring health will cost more the longer the illness get to ravage the body and the mind = less money used in aftercare!

Whats wrong with you shouldn't matter, everyone needs to be met with understanding, empathy, professionalism, realistic outcome, and help to deal with a new situation.
We need to stop discriminating against disease.
Either it is Orthopedics, Oncology, Psychiatry, Infectious diseases, digestive disorders or cardiothoracic. It sucks either way.
I still have yet to meet anyone who wants to be sick, and who thrive in health queues and bad treatments, have you???

Why medicate, if not propaply??

noreply@blogger.com (Alexandra) — Mon, 17 Sep 2012 09:58:00 +0000

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
make it to stick, but useless.

What pisses me of even more is that when I got Durogesic© the generic one this wasn't a problem, but because the government wants to save money I have to use the none generic version, or pay 1500 kr a month extra. I think that is so bull. I can only get the generic one if I get an allergic reaction to it.
But why get it in the first place when it wont stick?
And my doctor wanders why I use so much Ketogan©at the moment?? hello, why do you think I do that? because I am in that much more pain, and I can feel my hole body is going through a weird wibe, Its like it is fighting because I don't get the pain medication I need, and then I get what I need, and then we are back to nothing again.

It is frustrating, that money is the only thing our government things about, not the quality of treatment, and quality of life
But thats the life of the underdog, you lose some, and then you loose some, and after a while you loose some more... when can I get a home-run for once? just one...

Naive or hurt or poetic ?

noreply@blogger.com (Alexandra) — Mon, 10 Sep 2012 01:33:00 +0000

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.....

So when do we use it? When someone is sad, angry, hurting, hormonal, stressed, tired, or all of the above?
For me its when I am in a melancholy haze. Everything seems just out of reach. And yet reality punches you in the face!
But still hope is there, flouting around, waiting to get a hold of you, and you know that when it does, reality want seem so harsh. Sometimes its almost poetic.

When I was younger, and I had those days, I would write poems and paint. I loved how I could make something grim into a abstract art that made me feel peace..
And isn't that the true value of art? emotions?
When you are in you're teens you have this romantic abstract way of looking at the world, something naive, beautiful, yet rebellious. And we need them to get to our true self, to find what makes us tick, love, and to find our passion!!

So Is one of those days, the day who hate, or the day you know you are about to discover something beautiful about yourself??

Am I worthless???

noreply@blogger.com (Alexandra) — Sat, 08 Sep 2012 00:04:00 +0000

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.

Whats worse; doctors or my diseases???

noreply@blogger.com (Alexandra) — Thu, 06 Sep 2012 14:14:00 +0000

To get back some of the life I had is not a steep curve upwards.
To fight the system, doctors, Nav, NPE, societies judgmental attitudes towards sick people.
Going to a psychologist and physical therapy has helpt me a lot, it was a steep learning curve, but you cant always go up..
It is bloody hard, painful, raw, emotional, and really depressing at times.
And this is one of this times.. I am tired of fighting doctors. If I say I don't want to use morphine, I am being manipulative,
if I say I need it, then its the drugs that are talking. even if i cut the intake by 30% in 6 months, nobody pats you on the back. they say, you are using to much. will it always be to much?

I had to take this blood test a few weeks back to see my opioids level in my blood, and I couldn't take anything for a day, I can tell you that was not my finest hour, but I hang in there, thinking if I don't, they will call me an addict. So when I came back to get the result, they hadn't gotten any. There weren't any laboratories that did that... what the f%¤%??? shouldn't a doctor know this?? Why do it at all? Was it just to torture me?
But thats not the worst part, she then spoke to a doctor who I haven't seen in a couple of years, and with no facts he said that I was immune against morphine and that it would be easiest to discontinue the use of my pain medicine, Again, where came that from? So If I am, how can the morphine still take the pain away? It cant be both!
But is this about saving my but, or theirs?? In two weeks I am going back to State University Hospital, so what will the verdict be??
Something is wrong when Breivik gets better medical treatment then me. What have I done wrong? Trusting doctors? trying to get better, trying to get every known treatment , medicine, experimental and alternative Medicine out there, But if morphine is the worst, why haven't they tried more treatment? It doesn't add up..

Again.. why do doctors have a hard time believing that I don't trust them, don't want anything to do with the health system? would you? I am getting the short end of the stick at every turn.
I want to scream and tell them to maybe refresh their course in ethics, and strongly advise them to take a course in pedagogy, and maybe learn what empathy, understanding, compassion and respect means...Something has been lost... And it is us patients who are paying for it, with our lives, and it has to stop!!

Death before a feuneral..

noreply@blogger.com (Alexandra) — Mon, 03 Sep 2012 01:10:00 +0000

My grandmother died last Friday.. thats why I have been awol just being there her last days.... Its hard to see someone you love die, but excruciation seeing them die of what I almost died from a few years ago. Its a cold reality I don't wish on anyone, knowing the pain, but seeing my grandmother say it doesn't hurt, when I know that is just to comfort us, because it is anything but painless...
No one knows what its like to die, and do you want to know? really??
I don't want to know, but cant get it out. Isn't that the truth? We only want to until we do, then we wished we didn't??

My grandmother is going to be buried tomorrow, me and my sister has put some words together, to her, for her. But she deserves it... She has had a hard life, and both her parents died when she was really young. It was only her and her brother for all this years. And for me he wasn't only her brother, he was like a uncle, and our families has been close, and living in the same neighborhood.

But yesterday, her brother was found dead in his home, alone.. how can siblings die a week apart? And he wasn't even sick.
I never thought you couldn't die from pain or heart ace, but I have become a believer. The irony is that my grandmother wanted to die like that, just fall asleep, no pain, but not alone! Death sucks anyway you put it.
They say that death never comes alone, and that 3 die together. But in my book, 1 is to many and 2 is unbearable, and 3 is a tragedy!

To say that death is a part of life,is to comfort, it isn't anymore fun to see someone you have loved all you're life die, than someone young die. it is unfair anyway. you want just one more day, another hour to tell them that you love them, and not have to deal with them being gone.
My grandmother believed in god, and all I can think is that now they can be together again, as they always were in life. just the two of them..

"Now I lay you down to sleep
Pray the lord you're soul to keep
And if you die before I wake
Pray the lord you're soul to take"
Some people cant live without the other, so go be with grand mom, and tell her that I love her!

NPE A JOKE.........

noreply@blogger.com (Alexandra) — Fri, 31 Aug 2012 21:39:00 +0000

NPE is a joke in my eyes this time.
The doctor who operated on me the first time he gave me 50% medical disability here in March, that I didn't accepted.
He could say that he thought I was 50% disabled before I was operated, even though it was just covering his own ass. while he did not follow the table when he sat my disability at 50% .

Now another specialist have come with a new assessment of 100% medical disability, but it seemed that NPE think this is too high, and that since he follow the table when he sat the disability. The NPE made him adjust the % down to 70.

What's the use of specialist declarations if the NPE determines % anyway? And why do they accept a non table, assessment but not another? Aren't the NPE there to protect the patient?
I feel they are there to save the state money and lawsuits.

I'm glad I have an attorney who refuses to give up and give in!he was up late last night and, help me and give NPE hell. But I can safely say that has in no way improved my confidence in the system. Quite the contrary.
Why have a system if the poor, small people gets screwed??

Here I am/Who are you/Who are we going to be??

noreply@blogger.com (Alexandra) — Mon, 20 Aug 2012 18:02:00 +0000

“The secret to being wrong isn't to avoid being wrong! The secret is being willing to be wrong. The secret is realizing that wrong isn't fatal.”
― Seth Godin

I have been yelled at on the train for not letting "sick" people sit down, I have been cursed at because I said I couldn't help with lifting the stroller of the train.
Why have we lost the ability to think good of others?? Are we that self centered that we only see foes around us?? Are we all the devils children??

Where is normal courtesy? helpfulness? a smile?
When technology becomes our support network, our friends, family, relax time, and a boy/girl friend, what do we lose? Is technology the best thing that have happened??

What about kids? can children get bored today? have they ever needed to entertain them selfs for an hour? Or do they immediately go for the I Pad.. Isn't that scary that kids know how to use a I Pad before they can talk??
I have heard so many parents have this thought about raising children, but when they get them, they do everything they said they would never do.. But thats ok. We cant do it all, be everything.
I read this article where parents and scientists are more concerned about the internett than drugs and sex.
That says everything.... Yes I blog, I have Facebook, Twitter(don't use it though), e-mail, shopping, skyping and knowledge..
But I try to keep it on the down side.
45 min to reading the news, 10 min on facebook, 2 min checking my mail, and 30 min on my blog everyday. I don't think thats to much. It should be a tool for knowledge and comfort, not addiction.
But where do we draw the line of addiction?? Here is a test you can take to see if you are addicted.
Is seems to be more about how you are acting than about how much you time you use in front of it.

“The price of greatness is responsibility.”-Winston Churchill
We need to make the world a good place to live.
My blog has been about illnesses, understandably, But also about hope, the future, how to get a dignified life.. How to get society to take care of each other. back each other. Be Proud of one another.
If our truth is what the media is telling us, we will loose what the world is like, and that will be a grey-black dreadful world to live in....

Qutenza®

noreply@blogger.com (Alexandra) — Wed, 01 Aug 2012 15:44:00 +0000

I am in a research project that they will use Qutenza® that is a patch to be used against nerve pain.
They will use it on my lung scar since that is so painful. The project haven't started yet, but I hope it will show some promise. And give me some relief that I have longed after for so long. I don't expect it to make my situation good, but if the nerve pain from the scar and in my chest after the lung surgery can be relived with Qutenza®, then I am all for it.
Like I have said before, try everything twice, leave no rock unturned...

Qutenzas main active ingredient is capsaicin which is the active component of chili peppers that gives them their heat sensation.
It is also the first and only pure, concentrated, synthetic capsaicin prescription drug.
Capsaicin initial effect is the activation of TRPV1-expressing cutaneous nociceptors, which causes stinging and erythema due to release of vasoactive neuropeptides. After capsaicin exposure are cutaneous nociceptors less sensitive to a variety of stimuli. These effects of capsaicin, which occurs at a later stage, often called desensitization and is believed to be underlying the pain relief.
Other sensations such as heat sensitivity are not affected
Qutenza has been shown to be effective used alone and in combination with systemic drugs for neuropathic pain. Pain reduction is seen in clinical trials as early as week 1, and persists in the 12-week study period!

Qutenza® (capsaicin) should be placed on the intact, undamaged skin by a physician or under the supervision of a physician.(use max. 4 patches per time). The patch will remain on the skin for only 30-60 minutes. Initially the capsaicin empty cells for neurotransmitters that transmit burning pain. This can lead to local irritation, burning / stinging pain after the patch is placed on the skin area to be treated. This area should be treated with local anesthetic cream (lidocaine) to mitigate this reaction before capsaicin patch can be applied.
The first few days after the treatment, the treated area may be sensitive to heat, so avoid hot showers or baths, direct sunlight, and exercising. For persistent or recurrent pain, a new patch is put on every 3 months.

Commonly reported side effects are local transient burning, pain, erythema and itching at the attachment site. The side effects are transient, self-limiting and usually mild to moderate intensity.
Very common (> 1/10): other: pain and erythema application site.
Common (≥ 1/100 to <1/10): other: itching, papules, vesicles, edema, swelling and dryness of application site .
Uncommon (≥ 1/1000 to <1/100): gastrointestinal: nausea. Heart / man: first degree AV block, tachycardia, palpitations. Skin: itching. Hypertension. Infections: Herpes zoster.
Respiratory: cough, throat irritation. Musculoskeletal system: pain in the extremities, muscle spasms.
Nervous system: dysgeusia, hypoesthesia, burning. Investigations: elevated blood pressure. Eye: eye irritation. Rare: urticaria, paresthesias, dermatitis, hyperaesthesia, inflammation, reaction, irritation and bruising application site. Peripheral edema.

The good thing about living in this socialistic country is that I will get this treatment for free. One patch costs 428.717$, so if I had needed 4 patches each time that would have cost me 1714.86 $ every quarter.
The more time I deal with my situation the more strongly I belive that free health care is a human right, and not for the blessed few who can afford to bye they're health!