Sometimes I just let the weird looks go on by me when I order the ice cup or something unusual. Why bother to explain to someone who does not give a rat's ass about me anyway!
I hate it when I'm at a restaurant and I have water......they keep toping it off and then I lose track of how much I've had. I try to move my water glass WAY out of the way and she still seems to find it.
Quote from: Rerun on October 29, 2006, 10:44:55 AMI hate it when I'm at a restaurant and I have water......they keep toping it off and then I lose track of how much I've had. I try to move my water glass WAY out of the way and she still seems to find it.Yeah, I dislike that to. They never ask if you want a refill or not. Does anyone ever think that maybe I was DONE drinking that water???
Quote from: sandmansa on October 29, 2006, 01:20:12 PMQuote from: Rerun on October 29, 2006, 10:44:55 AMI hate it when I'm at a restaurant and I have water......they keep toping it off and then I lose track of how much I've had. I try to move my water glass WAY out of the way and she still seems to find it.Yeah, I dislike that to. They never ask if you want a refill or not. Does anyone ever think that maybe I was DONE drinking that water???Well they figure that if you don't want to finish it that you will just leave the rest since water is free.But they don't realize SOME of us may be MEASURING! Sometimes it is just easier to call in advance, say that you are coming in and have a special diet and measure your drinks. Then they realize and remember .. usually that is....
Here's another one...a woman at my church is really into this "raw foods" diet. She came up to me a few weeks ago and said "Well, are you ready to try a new diet while you are waiting for your transplant to be rescheduled?" I told her I was on a renal diet, and that I have a dietitian that I see regularly. Wouldn't you think that is all that I needed to say? Nope - she seemed to think she had the right diet for me. I tried to explain some of the basics of the renal diet, but she just kept looking at me like she knew better. Finally I told her that my diet was restricted enough and I didn't really need to add a second diet and restrict it even more. I know she was trying to help, but people don't realize there is not a magic anything to make this disease go away - ever.
I can think of only one time I've been rat-@ssed - at a wedding... I got into a fight with a tree.... I think it was a draw... it lost a branch, I got a scar on my forehead (that is almost impossible to see it now)as expected, I haven't gotten drunk again... mainly because I can't stand the taste of alcohol...
I got a call from work (where I use to work) inviting me to the Christmas party. I asked what day and they said Dec. 14 which is a Thursday......um I have dialyzed on T, Th, Sa for a fricking year...... Then they said well maybe you could come to Sandra's retirement party which is November 14.....a Tuesday......um no I dialyze on Tuesday......Then they say "well if they change your day or time let us know." Like I was the problem.Then they asked me to send them the Christmas story I wrote 2 years ago because they wanted to read that again at this year's party. Sure........no problem.That is so hurtful to me that nobody can remember that I have dialysis on Tuesday, Thursday and Saturday!
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
Quote from: Rerun on October 31, 2006, 02:26:56 AMI got a call from work (where I use to work) inviting me to the Christmas party. I asked what day and they said Dec. 14 which is a Thursday......um I have dialyzed on T, Th, Sa for a fricking year...... Then they said well maybe you could come to Sandra's retirement party which is November 14.....a Tuesday......um no I dialyze on Tuesday......Then they say "well if they change your day or time let us know." Like I was the problem.Then they asked me to send them the Christmas story I wrote 2 years ago because they wanted to read that again at this year's party. Sure........no problem.That is so hurtful to me that nobody can remember that I have dialysis on Tuesday, Thursday and Saturday!Oh I feel for you Rerun! Like we can just change what day we do dialysis? Oh ya let's skip a day or move it a day. Like that will have NO effect on us!! When there is a long weekend because of a Holiday on Friday or Monday (I dialysize on M/W/F) the cab driver always says, "Oh it is a long weekend so the dialysis unit isn't open right? Does this mean I take you on Tuesday instead??"
Because truly serious disease is rare in the human population, particularly since we have been evolving for the last million years in such a way as to weed susceptibility to these problems out of the gene pool, most people simply assume everyone conforms to the same paradigm they do, which is: 1. Get sick; 2. Go to the doctor/hospital; 3. Get treated and become healthy once again; 4. Return home. They cannot understand how it is possible that someone can have been to the doctor or stayed in the hospital and not come home well. "Congratulations! You're out of the hospital now. You must be feeling a lot better!" Or, coversely, they assume that if you are not well, it is because you haven't done what every sensible person should do, and that is go to the doctor or the hospital to be treated and get well. The final possibility is that they assume if you are not well after having been to the doctor it must be because you are not taking your medicine or following the instructions. And I'm sure we have all heard this one: "Why don't you just get a transplant if dialysis is taking up so much of your time?"The frightening thing is that the general public, people with this degree of misunderstanding about serious illness, are ultimately the one's who, through their representatives in the legislature, determine health care policy, deciding whether there should be public healthcare or private insurance, whether the existing transplant laws are adequate, how much money should be spent by the government on medical research, how much money the public purse should devote to dialysis care, etc. What is the legitimacy of a democracy if the majority understands our problems about as well as goldfish understand a bicycle race?
I have met people who do not even know WHERE their kidneys are in their bodies...Uninformed comments do not surprise me at all...
I will confess to being ignorant (gasp!). Before all this with Joe, I did not know anything about dialysis, kidney failure, etc. I don't even remember knowing dialysis existed. It was just something I had never been exposed to or educated on.