preacherman
Distinguished member
- Joined
- Jan 24, 2016
- Messages
- 109
- Reason
- PALS
- Diagnosis
- 04/2016
- Country
- US
- State
- IA
- City
- Thornburg
My wife and I have recently moved and we have had to change clilnics.
I have not been impressed with the new clinic and have been trying to figure out what has really been bugging me about the new set of doctors I am seeing....
The old clinic I went to, I shared one of my hobbies with the head of the clinic.
I grow and propagate different strains of tobacco (I find different strains have very differing effects and differing therapeutic values).
She thought that was very interesting and was very encouraging (she obviously didn't care anything for tobacco... but that I still had some particular interest in a hobby).
I told her that I didn't know if I would be able to do it this next year.
Her reply, "When you don't think you can do it is when you won't be able to do it."
And now, this new clinic:
I have weakness in both ankles and after walking a while, they get very tired and sore and it is difficult to walk the next day.
I have 2 AFOs and 'try' to use them when I am out and about.
I was telling the doctor that I really would like something to use around the house... I did not want to wear the AFOs when I was just going to be sitting around the house; and I have, in the past, had a nylon lace up ankle brace which helped a lot.
I asked him for such braces... his reply,
"No, we want you to wear the AFOs all the time."
But I don't want to wear the AFOs just sitting around the house; they are very restricting and not comfortable to wear all day, but I would wear the nylon braces pretty much all the time when I am just around the house since they are comfortable and not so restricting.
Again, "But we want you to wear the AFOs, there is no reason to have the nylon braces";
and that was the end of that.
My comfort and my wishes obviously meant nothing to him... but boy, when it comes to an advanced directive... they seem quick to accept your wishes for a DNR and such.
The next doctor (at the new clinic): I am starting to have hot spots if I have been sitting in the PWC for a long period of time. I asked her for a sheepskin for the chair because of these hot spots.
She wanted me to show her the hot spots so I did.
I wear bibbed overalls most of the time (as i have done for many many years), and one of the straps was rubbing my back.
Her reply, "You don't need a sheepskin; It's time to stop wearing those clothes and get some loose fitting sweats or something."
Now, these are just little things; and I can afford to buy my own sheepskin and I can afford to buy the nylon braces (though they are kind of expensive).
That is not the point.
The first doctor's attitude (at the old clinic) was, basically, that I should continue to do whatever I enjoy doing, and whatever will make my life more normal, and that when I decided that it was time to give up.... then that is when I am defeated.
These are words for life... terminal illness or not.
The new clinic, what I am hearing (this is not what they said, but what I am hearing):
Look, your life is changing and there is nothing left you can do about it, so you might as well just get used to it and get ready to roll over and die.
And by the way, don't try to think that you would know better than us what is good for you.
I have not been impressed with the new clinic and have been trying to figure out what has really been bugging me about the new set of doctors I am seeing....
The old clinic I went to, I shared one of my hobbies with the head of the clinic.
I grow and propagate different strains of tobacco (I find different strains have very differing effects and differing therapeutic values).
She thought that was very interesting and was very encouraging (she obviously didn't care anything for tobacco... but that I still had some particular interest in a hobby).
I told her that I didn't know if I would be able to do it this next year.
Her reply, "When you don't think you can do it is when you won't be able to do it."
And now, this new clinic:
I have weakness in both ankles and after walking a while, they get very tired and sore and it is difficult to walk the next day.
I have 2 AFOs and 'try' to use them when I am out and about.
I was telling the doctor that I really would like something to use around the house... I did not want to wear the AFOs when I was just going to be sitting around the house; and I have, in the past, had a nylon lace up ankle brace which helped a lot.
I asked him for such braces... his reply,
"No, we want you to wear the AFOs all the time."
But I don't want to wear the AFOs just sitting around the house; they are very restricting and not comfortable to wear all day, but I would wear the nylon braces pretty much all the time when I am just around the house since they are comfortable and not so restricting.
Again, "But we want you to wear the AFOs, there is no reason to have the nylon braces";
and that was the end of that.
My comfort and my wishes obviously meant nothing to him... but boy, when it comes to an advanced directive... they seem quick to accept your wishes for a DNR and such.
The next doctor (at the new clinic): I am starting to have hot spots if I have been sitting in the PWC for a long period of time. I asked her for a sheepskin for the chair because of these hot spots.
She wanted me to show her the hot spots so I did.
I wear bibbed overalls most of the time (as i have done for many many years), and one of the straps was rubbing my back.
Her reply, "You don't need a sheepskin; It's time to stop wearing those clothes and get some loose fitting sweats or something."
Now, these are just little things; and I can afford to buy my own sheepskin and I can afford to buy the nylon braces (though they are kind of expensive).
That is not the point.
The first doctor's attitude (at the old clinic) was, basically, that I should continue to do whatever I enjoy doing, and whatever will make my life more normal, and that when I decided that it was time to give up.... then that is when I am defeated.
These are words for life... terminal illness or not.
The new clinic, what I am hearing (this is not what they said, but what I am hearing):
Look, your life is changing and there is nothing left you can do about it, so you might as well just get used to it and get ready to roll over and die.
And by the way, don't try to think that you would know better than us what is good for you.