Willow
Distinguished member
- Joined
- Dec 28, 2006
- Messages
- 102
- Reason
- DX MND
- Diagnosis
- 04/2012
- Country
- CA
- State
- East Coast
- City
- NA
I joined this site in Dec of 06...I have not posted very much because I have nevr bolieved have ALS. Istill don't and apart from MDA provincial rep...NO one has utterded those word/that term to me. Althoug my mother in 1957 was tikd she had it.
But I am her almost 2 yrs later still searching and lloking for answers.
I am really really angry at this time...I am so tired of being a lab rat for so many doctors. Above and beyond all of their tests, theories, guesses etc...there is ME. I am a person. I know I will not die tomorrow, I know my condition is not life threatening at this moment....but it is life altering.....but I am still me and it affects ME.
So many tests, so many doctors, so much waiting.....all I ask is for some direction. Is that really too much to ask.
I am so very very incredibly tired...tired of the pain and discomfort of all of his. It just seems to me that I am getting no where...they get to have an "unusual case" and they get to have that feeling of "of wow" something else...gotta look into this".
I used to be like that...I would wake each day and look at each day as a wow...I wanted to live it...but now...I know longer look at life that way..I am seeing in my futute that there is no now longer any wow and enjoyment/living.
As an artist through my soul...I can no longer paint...I am lucky to be able to right my name legibly..another love of mine was gardening...but I can no longer put that shovwel into the ground........so now who am I now. Who the HELL AM I!
What is the point of all this......since I am such a "unique medical dilema" and NO ONE wants to step up and even give a hint as to what to do to make MY life easier...........then whats the point...I should just off myself now while I have some sense of at least I tried.
But I am her almost 2 yrs later still searching and lloking for answers.
I am really really angry at this time...I am so tired of being a lab rat for so many doctors. Above and beyond all of their tests, theories, guesses etc...there is ME. I am a person. I know I will not die tomorrow, I know my condition is not life threatening at this moment....but it is life altering.....but I am still me and it affects ME.
So many tests, so many doctors, so much waiting.....all I ask is for some direction. Is that really too much to ask.
I am so very very incredibly tired...tired of the pain and discomfort of all of his. It just seems to me that I am getting no where...they get to have an "unusual case" and they get to have that feeling of "of wow" something else...gotta look into this".
I used to be like that...I would wake each day and look at each day as a wow...I wanted to live it...but now...I know longer look at life that way..I am seeing in my futute that there is no now longer any wow and enjoyment/living.
As an artist through my soul...I can no longer paint...I am lucky to be able to right my name legibly..another love of mine was gardening...but I can no longer put that shovwel into the ground........so now who am I now. Who the HELL AM I!
What is the point of all this......since I am such a "unique medical dilema" and NO ONE wants to step up and even give a hint as to what to do to make MY life easier...........then whats the point...I should just off myself now while I have some sense of at least I tried.