Monday, December 24, 2012

0 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...

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....

Friday, December 21, 2012

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

Sunday, December 16, 2012

1 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...

Tuesday, December 11, 2012

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,

Monday, December 3, 2012

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??

Thursday, November 29, 2012

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

Monday, November 26, 2012

0 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

Wednesday, November 21, 2012

1 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

Sunday, November 18, 2012

0 Discontinue of pain medication....


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

Monday, November 12, 2012


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

Wednesday, October 31, 2012

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

Thursday, October 18, 2012

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

Sunday, October 14, 2012

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

Tuesday, October 9, 2012

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

Thursday, September 27, 2012

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

Friday, September 21, 2012

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

Monday, September 17, 2012

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

Monday, September 10, 2012

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.....

Saturday, September 8, 2012

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.

Thursday, September 6, 2012

0 Whats worse; doctors or my diseases???

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,

Monday, September 3, 2012

0 Death before a feuneral..

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!

Friday, August 31, 2012

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

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??

Monday, August 20, 2012

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

“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....

Wednesday, August 1, 2012

0 Qutenza®

 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!

Saturday, July 21, 2012

0 GOD vs. NOT GOD??

God doesn't give you more than you can handle. What a creakily hoarse shit..
If something good happens it is Gods work. Something negative and it is the human race that are corrupt and flawed.
If God is real, and he made us in his image. than he is a very flawed man himself or woman.
I will also claim that we are defective.
All we do is kill each other for money and power... Did he ever try to send us back

Tuesday, July 10, 2012

0 Manipulate.. the truth..

When it is ok to manipulate?? I call it that for this this entry, but influence is in the same family!
In order to get a better job? higher salary? more helpful husband? friends, family, colleagues? doctors, nurses?
Do we not manipulate us through the day?
I don't like to admit it, but I do it because sometimes it is easier to get things done, but I mean no harm, at least now knowingly..

But who decides when it is morally right to use manipulate? Jesus? NAV? Politicians ? The King?
Politicians are the biggest manipulator available. They are willing to sell their souls to get elected to parliament. The royals talk so much of tradition and the kingdom, but when their people are starving, and out of a job, they  are buying couture fashion.
Manipulators can be people that have the intention of hurting you, but it is not them I am thinking about.
Its the more knowingly form of social influence manipulation I am thinking of.

We talk about the negatives side of manipulation, an only really bad people are using it. It a curse word when you want to make someone feel bad for sharing their innermost hidden thoughts. But I think we all do it, when we really want that job, or a new handbag, I have on several occasions actually manipulated myself into buying shoes.how bright is that?? making me belive I really need it.
And that goes with doctors to.. I know now what they want to hear, so I know what to say, so I will increase my chances of getting help.. But honestly, who wouldn't? For when I am honest they give me this look, like I am a freak for having normal scared of being sick, dying thoughts!

Isn't that the same as when women say no, they mean yes? when you are using reverse psychology on someone? Telling them they look skinny, when they are not? Or a doctors who are trying to persuade patients to change unhealthy habits, and lifestyles?
A lot of the time i think we do it to be nice, or to help ourself with something we think we deserve..
We need to learn from each other, influence someone to do better, feel better, be better.
Manipulate the shit out of the world leaders so we can get some peace on this planet... Think if we could have manipulated pharmaceutical companies to make drugs because they want to help people and not for the profit? The Food industry was about feeding all living creatures? Made tyrants give themselves the same punishment that they had inflicted onto others?? Thats starting to sound like I world I would have liked to lived in..

Wednesday, July 4, 2012

0 Whats A life??

"To die is poignantly bitter, but the idea of having to die without having lived is unbearable." Erich Fromm

Whats the sum of a life?? the people you meet, the accomplishments you achieve,the family you build, you're adventures and traveling??
The one thing they have inn common is that they are youre memories.. and thats all you have..
At the end of you're life, whats more important. memories and a dying body or a dying mind in a old body??

I have always said that I would rather loose my mind and not knowing, than being held prisoner in a broken body.. But I don't know anymore... Its easy to have beliefs when you are young, dreaming you're own Nirvana, but dying is shitty no matter how you look at it, But if you have lived a fulfilled life, maybe that makes it easier. knowing that you have done what you send out to do.

My grandma is dying from cancer, and that sucks. She was given radiation, and in some cases it has the opposite effect, so instead of 1 tumor she has now 16.
But in all of that, she has no problem accepting it, she has had a hard, wonderful life. She is surrounded by her family, and she cherishes her memories from her long life.
And she is ready to go to God and grandpa, and that gives me comfort. It would have been terrible if she had no faith and was scared of dying, but for her, its just a new part of her journey.

I have always liked the saying, money don't make you rich, experiences do...
You cant take you're money or worldly possessions with you, If there is something after life, you're soul is all you get to keep,
So nurture the soul, with knowledge, compassion, love and a lot of fun.. and I mean a LOT of fun indeed

Monday, June 25, 2012

0 Lets try it again, we are here for you :)

Who in the gods name would want to have a painful chronically disease for the rest of their life?? Who cares if it is rare or common??Its not a competition. Sick is sick, and it is as devastation to everyone who are forced down that road.
We have all dreams, hopes, goals, and seeking happiness.
I remember when I was in the hospital and had to take all this different pills to see how effective they were, the only problem was that the spasms were so severe that I had to get a double dosage of morphine afterwards.. How can you clinically say that that medicine didn't work?? It was just the wrong consistency of the product. SO I don't understand why they are so reluctant to try those medicines again, we just have to find the right way to take them without irritating the esophagus.

When I am lying here writing, this one thing hits me: every treatment, medicines etc I have been through the last year and a half, is a result of what me and my boyfriend have come up with.
And none of us have any medical background. How can we know more then the specialists at our National University Hospital???
I would be so humiliated and embarrassed if I couldn't find one treatment for my patient!!! Why have a health care system if you have to self diagnose yourself?? Doesn't that defeat the purpose?

My lung specialist said something to me last time that have been churning around in my head : The health system have stopped treating the patients with respect and dignity.
When you are sick, you are scared, alone, and I think we all can agree that all we want to be met with is some compassion... It is amazing how much we humans are willing to forgive if we just feel like our voice have been heard.

Us little guys in the big wheel of society just want to be seen heard and treated with kindness.
But maybe thats why we are loosing that because we only communicate with each other over the internett. But then again, for someone like me, the internett is what makes me feel like I am at least a small part of society.
But If I could have meet those of you that read my little blog, maybe we would have been an open, honest, non judging group that would have been like paying it forward. The only problem is that its not so easy getting together people from all the continents.. But rewards only feels like that if you have to fight for it... What are you standing up fighting for today???
Me, I am doing th laundry.................

Wednesday, June 13, 2012

0 Nitrolingual® (nitroglycerin)

One of my pain doctors have this theory that I don't have esophagus spasms, but neurological spasms, that my body keeps sending the wrong signal to the brain.
I don't really care what me diagnosis is, if it means getting better.
Anyway, my boyfriend asked last time if we could try some of the old medicine i have tried before, at the beginning my esophagus spasms was out of control, and everything we tried just made it worse.agreed as he couldn't counter act that everything should be tried several times, and if there are some changes then that means that maybe some of them will work now !!!
So I went to the pharmacy and got Nitrolingual 0.4 mg/dosage Pumpspray.

And hold on to you're hats:::: It did, it really did.. It doesn't take the big ones, but it helps will the smaller ones and when I can feel the build up.
Nitroglycerin is a vasodilation. The mechanism of nitrates are unknown, but may be related to decreasing vasospasm in the brain-stem.
What my doctor said it is like when you get the lactic acid in the muscles after a hard workout, the muscles need more oxygen when they have fo little, and some of the same Nitroglycerin  think they are doing with esophageal spasms.

The Negative:
  • you must always sit or lie down when taking it, the blood pressure gets higher and you will likely pass out if you are standing.
  • Never ever inhale it
  • The first weeks you will most likely get a mild to severe headache, but it will get better.
  • When it is warm, it seems like it doesn't work that well, maybe because the arteries are more extended from the heat, and the  headache gets worse when it is warm, but I think that comes from dehydration on my part. Not easy getting enough fluid when you have esophagus spasms. 
  • If you have migraine to begin with, never use this.. Migraine causes blood vessels to dilate, so the nitro will just dilate them even more.
  • Can develop tolerance to nitrates,  and reduced the efficiency.

For me this has been a small step in the right direction. I actually had my first day with no Ketogan last week. That was the first time in 9 months.. Thats amazing in my book..
And I have been able only a new refill every 9-11 days, and before 6- days..
I know this is not the final answer,but it is a step in the right direction, and  I will take every victory I can get.
And if I only have nerve esophagus spasms, how can Nitroglycerin  work at all?? because they are not connected, and with some other damaging symptoms I now can slam on the table next time, maybe they finally have to do something, because now the proof is right up in their faces, and that they cant keep ignoring it...
1-0 to Alex.. What a way to start the summer folks :)

Thursday, May 31, 2012

0 Metallica..

Summer is a great time.. Friends, barbecue, tanning, traveling, enjoying a ice cold beer..
For me.. the greatest thing this year was the Metallica concert 23 of Mai..
I know... I have been looking forward to this for 9 months and I wanted to try an live for one evening.
The best was that it was 25 degrees Celsius, good friends and family was with me, and Metallica.. Who doesn't enjoy Metallica??
I took some pain killers before I went, and when the base heat the hardest It triggered spasms. So I sat myself down. 90 % of everyone was drunk anyway so that didn't seem odd to me..
But what made the day for me was that when I did sat down several people came over to me and asked if I was alright or if they could do something for me, or get me something to drink..
I have said for a long time that we have stopped caring about eacother in the public room, and a Metallica concert was the last place I thought people would care that much..
Again: don't judge the book bye its cover..
I did have to go when there was one song left, but I felt that was ok.. I had a great evening in a long time..
It was good for one evening to just be me, not my illness...

Monday, May 28, 2012

0 Exercising from your own house..

Have you sometimes skipped exercising due to travel time to the gym, or just the fact that after coming home from work you get glued to the sofa?
Yet there are all this commercials with exercising DVD you can do at home. But who wants to use 100$ on a training routine that they don't know they will like?
Now you don't have too. there are a lot of different exercises on the internett, for free. Isn't that a great 2 Pentecostday??
I have put together a few different work out types that you can try at home:

Bonnies Workout Pilates Routine Total Body;

Kickboxing Workout Exercise Class;

 5 minute Cardio workout;

20 Minute Dumbbell Workout;

Remember to warm up first, use a gym mat, and training sneakers so you dont get any injuries!
Have fun :)

Monday, May 21, 2012

2 Why good vs bad??

Never take you're life for granted.. I did, I just thought that if I was a nice, good, girl, with a little bit crazy on the side that I would get to realize my true potential and dreams..
But it never works out like that.... Why do we always say that bad things happens to good people?? So the healthy hard working people are evil?? I have never gotten that phrase, but then again isn't there something evil, and selfish in all of us? and good things to? why does it have to be either or? why cant we be good wifes, friends, and still want to have a good career??
I think what we become is who we choose to be, not who we are born to be..

Thursday, May 10, 2012

0 Not getting help can actually damage youre recovery... Forever

Today I finally got an appointment to see a pulmonary specialist, and took a loot of test..
He was outrage bye the way my health has been handled, he said the doctors involved should get a reprimand because this was unacceptable.
I had to agree with him, but still, the first doctor who said: you must hate doctors... I don't hate them, I just don't trust them.

He also said that they should have done all this test early to see how my lungs were damage so that they could have done something about it, but because it has been 2 years, its like the part of the damage lung has "shut" down.
He said he wanted a CT x ray of my lungs, and help me as much as they can,and that i should probably start acknowledging that this is permanent.

And last my lung function is only 64% left.. He said my lung capacity is that of an 70 year old..
Its sound right because I can't go up my stairs without loosing my breath, and I live on the second floor.
This hasn't hit me yet, and its going to be a big one to swallow, but bad answers are better than living in the unknown.

What made my day though was that this doctor didn't judge me, he understood, he was mad for me, and that's a new experience.
He said that even if my esophagus spasms would go away that I most likely would need Durogesic pain path anyway, because the pain I feel in my lung is over average and normally when you have been through such a large surgery, and the massive infection I had...

I guess my body will never be the body I was used to.. But knowing my limitations can give me the means to find things I can do and build my confidence and life on a new foundation. Yes I have been handed a crappy card, but so has a lot of other people..
I hope in the future we can be more honest, and not feel like a looser because we can't do what we want, but find a path that happiness is on, instead of focusing on all the bad things..
I can really hear that I have started in therapy already :)