tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
This past week I had another clinic visit. One of the the things that has struck me as I have been thinking about what was said to me was how many times the phrase "Quality Of Life" was brought up.
I refuse to take medicine for the pain and cramps as I do not react well and they make me foggy, the Dr insisted though that it would improve my "Quality Of Life".
We discussed the need for a permanent wheelchair and they are insisting (with Medicare) that I get a standard huge monster (instead of a lighter collapsible model) that will not work in my house and that I cant transport but that some how will ... you guessed it ... improve my "Quality Of Life"
You need to use your BiPap/Trilogy a lot more during the day as it will ... here it is again ... improve your "Quality Of Life". Never mind that I cannot speak to my wife with it on and it annoys the he11 out of me.
Then theirs always the depression discussion. They tell me I need to be going to support groups and taking meds all to .... wait for it .... improve my "Quality Of Life". For me spending the time they way I want to spend it with my own mind (not a pharmaceutically created one) is the right way.
Doing all or some of these things for people who feel that they will get benefit from them is fine, even good. But to throw all of us into the same "bucket" (pun intended, get it "ice bucket") is just more medical school trained nonsense. We are not the same and all the "experience", "psychology", and "good intentions" do not mean anything if the individual is not being listened to.
In regards to progression how many time do we hear that everyone is different? And yet in regards to treatment we are all thrown into the same "bucket" and not treated as different individuals at all.
The bottom line is that we take the knowledge that we gather and determine what will make for a better "Quality Of Life" for us the individuals. We do what is best for ourselves and our loved ones to make the remainder of these miserable days as good as possible.
I refuse to take medicine for the pain and cramps as I do not react well and they make me foggy, the Dr insisted though that it would improve my "Quality Of Life".
We discussed the need for a permanent wheelchair and they are insisting (with Medicare) that I get a standard huge monster (instead of a lighter collapsible model) that will not work in my house and that I cant transport but that some how will ... you guessed it ... improve my "Quality Of Life"
You need to use your BiPap/Trilogy a lot more during the day as it will ... here it is again ... improve your "Quality Of Life". Never mind that I cannot speak to my wife with it on and it annoys the he11 out of me.
Then theirs always the depression discussion. They tell me I need to be going to support groups and taking meds all to .... wait for it .... improve my "Quality Of Life". For me spending the time they way I want to spend it with my own mind (not a pharmaceutically created one) is the right way.
Doing all or some of these things for people who feel that they will get benefit from them is fine, even good. But to throw all of us into the same "bucket" (pun intended, get it "ice bucket") is just more medical school trained nonsense. We are not the same and all the "experience", "psychology", and "good intentions" do not mean anything if the individual is not being listened to.
In regards to progression how many time do we hear that everyone is different? And yet in regards to treatment we are all thrown into the same "bucket" and not treated as different individuals at all.
The bottom line is that we take the knowledge that we gather and determine what will make for a better "Quality Of Life" for us the individuals. We do what is best for ourselves and our loved ones to make the remainder of these miserable days as good as possible.