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!

0 Some Die Young

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

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..

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

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.................

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 :)

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...