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...

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 :)

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..

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 :)

0 Fight for each other.....

I have met doctors who flat out didn't belive me, and thought it was all in my head... But why has our world become a place where we think people are lying, and that everyone only thinks  of ourselves instead of all of us together.. I wish our society would be more like an ant colony.
Think, then I would already be back to school, because I would have thousands being there fighting side by side from me, instead of just a few..My doctors believed that I dint want to be sick, that I am not faking it, I am not an actor, I hate to lie, but I do have a poker face, I just don't like to use it.
I want people, doctors, friends, family, and nurses to know the real me, the scared out of my pants, angry, frustrated, the girl that wants to belive that there is still some good in this world. Think how much we could have accomplished if we did that for one another????
I would want to live in that world..

2 My Homework this week....

My first lesson this week is :
Accept reality as it is here and now.


To be honest, I really don't know. I know my reality, but at the same time I flee my reality because I don't know how to accept that the life I knew is over.
And if I accept it I fell like I am giving up on the idea of getting a treatment that can improve my quality of life.
Do any of us accept the brutal honesty of where they really are her an now?
I am going to have to chew on this a little while longer..


My second lesson is:
How my mind affects my mood and my energy?

thats a easier one. I drag myself into a deeper mud bath, my skin loves it, so does my hair. But my mood is as shifting as summer thunders/rain near the equator.
When I am in pain, I am like a rapid dog, I can snap without warning. And afterwards I feel so guilty, and then I wallow in self pity..
I can see how my mind can screw me over. But I guess thats my reality. I don't know how to deal, so I do all the wrong things, say the worst, and feel guilt from here to India.
I need my energy to get me back to a creative place, I have always loved doing things with my hands and creativity. I love to paint, scrapbooks, chasing historical monuments and artifacts, and make-up and fashion..
I miss it, but cant seem to get fashion to work with me. The close I used to love, I cant where because of my painful lung scar, and I cant wear pants that has a tight fit because of the drugs I take. So now I have lost that part who loved dressing up for a new day.
I just wish for one day that I could feel like a princess. perfect hair, make-up and a smashing outfit.
Maybe thats the energy I should focus on..... getting back to the creative, historical buff that is Alexandra??

0 Can I be a Firework??

This songs really hit me right in the heart. I don't listen to a lot of music this days, it makes me to sad. But this one gives me the shills. It makes be belive that maybe there still is a part of me in here that can be someone I once dreamt of. maybe everything isn't lost.... So Thanks Katy Perry for that :)

0 Placebo...

I read an article in a Norwegian female magazine "Kamille", where they had looked into the research on why the placebo pill can be a painkiller etc.
Our thoughts have a direct impact on the chemistry of the body. Placebo Effect is thus very real.
Professor in psychology Magne Arve Flaten have researched the placebo effect for years, and he thinks we should call it anticipation effect. The anticipation are activating processes in our body.
researchers thinks the explanation is very closely related to stress.
If a person with severe pain are plagued with stress, fear and uncertainty, and that can increases the pain.
Similarly, a person who believes that he/she gets help with the pain, reduces the stress experience and perhaps less pain.
placebo effect can thus be explained by the fact we relax when we think we have a pain killing substance, allowing the body morphine to be excreted .
I know I relax more after I've taken ketogan, although it has not begun to work because I know that help is on the way.
Researchers have found out the reason the placebo helps is because you think it will, and our thoughts and feelings can affect our physical body.
If they could have made a sort of placebo pill that actually made the body its own morphine so that you're body will give you just the right amount of painkillers, would be an amazing breakthrough.
Trick you're body to handle the problem instead of putting a lot of pills in you're body that has serious side effects.
Think of all the things I could do again. I could drive, remember again (that what is my biggest personality trade, I know a little about everything, and I have a good memory, so I have been grieving over this lose).

I don't care what makes the pain go away, If a placebo could do that, bring it.
After only a few sessions with my psychologist I see clearer than ever how the mind and body work so closely together. I have always belived that you need to treat both, but this makes it even clearer.
Do you really care how a pill work, if it will relive pain ??
Placebo has become this stigmatizing word, but I think we should look into it.
Some studies show that patients have gotten a significant better health by placebo, although it should not have been possible without conventional medications. So I say that maybe we should change the name of the pill and view it as a positive medicine instead of "deceive" drug to see if you're one of those who stupidly got  deceived and got a huge medical effect of a placebo pill ..