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 :)