On October 19 and 20, in my posts, I mentioned an individual who was struggling fiercely with Amy.
I am ecstatic to report that he has left the hospital, a little worse for the wear, but alive and kicking, still among us, living to fight Amy another day.
I talk about the bumps in the road, but as I said to Tim, he ran dead into one of those spring thaw, all the way to China potholes that are so common in the north country.
This is what this disease seems to be all about (or not maybe).
You just never know from day to day what to expect, what kind of surprise each day will bring.
Sometimes it is minor like a little constipation or edema and the next day it is double pneumonia like Tim experienced.
The one thing that you can count on with Amy is that you can't count on anything.
One minute you are on top of the world and the next minute (literally) you find yourself flat on you back, unable to function. Give it a couple of minutes and you are good to go again.
This is what I find so damn frustrating about Amy.
Some nights you go to sleep wondering if you will wake up and some nights you hope that you don't.
Turn your back on her for an instant and she will sucker punch you, face her head on and she will just blatantly punch you in the nose anyway.
She'll thumb her nose at you as you struggle with the side effects of your treatment regimen.
Another problem is that this is such a personalized disease that anecdoctal evidence means very little when trying to anticipate what is going to happen to you.
Two people can take the same drug with completely different results, some good, some bad.
What works for one may not work for the other.
My case is proof of this. Some people can find a state of remission with Melphalan but it did nothing for me. Some may start with Velcade and end up with Melphalan as their magic elixir.
The Grand Experiment continues every day in the world of amyloidosis.
This up and down adventure gets depressing after a while and makes you question the fight sometimes, but you just have to keep on truckin' everyday.
This is what we do.
If we offend you or piss you off, please understand our frustration.
You don't have to excuse us or pretend we haven't hurt you, give it right back, make us think about what we have done, but try to understand our frustration and our inability to deal with it sometimes.
This is all we can and will ask for.
I am ecstatic to report that he has left the hospital, a little worse for the wear, but alive and kicking, still among us, living to fight Amy another day.
I talk about the bumps in the road, but as I said to Tim, he ran dead into one of those spring thaw, all the way to China potholes that are so common in the north country.
This is what this disease seems to be all about (or not maybe).
You just never know from day to day what to expect, what kind of surprise each day will bring.
Sometimes it is minor like a little constipation or edema and the next day it is double pneumonia like Tim experienced.
The one thing that you can count on with Amy is that you can't count on anything.
One minute you are on top of the world and the next minute (literally) you find yourself flat on you back, unable to function. Give it a couple of minutes and you are good to go again.
This is what I find so damn frustrating about Amy.
Some nights you go to sleep wondering if you will wake up and some nights you hope that you don't.
Turn your back on her for an instant and she will sucker punch you, face her head on and she will just blatantly punch you in the nose anyway.
She'll thumb her nose at you as you struggle with the side effects of your treatment regimen.
Another problem is that this is such a personalized disease that anecdoctal evidence means very little when trying to anticipate what is going to happen to you.
Two people can take the same drug with completely different results, some good, some bad.
What works for one may not work for the other.
My case is proof of this. Some people can find a state of remission with Melphalan but it did nothing for me. Some may start with Velcade and end up with Melphalan as their magic elixir.
The Grand Experiment continues every day in the world of amyloidosis.
This up and down adventure gets depressing after a while and makes you question the fight sometimes, but you just have to keep on truckin' everyday.
This is what we do.
If we offend you or piss you off, please understand our frustration.
You don't have to excuse us or pretend we haven't hurt you, give it right back, make us think about what we have done, but try to understand our frustration and our inability to deal with it sometimes.
This is all we can and will ask for.