0 Rule of Law, then my law...

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

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

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

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

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

0 Why medicate, if not propaply??

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

0 Naive or hurt or poetic ?

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

0 Am I worthless???

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

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

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

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

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,

1 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!

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??

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....

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!