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Author Topic: Ignorant things people have said to you  (Read 293880 times)
Mom3
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« Reply #50 on: August 26, 2006, 06:09:11 PM »

I try to have compassion because I'm sure I've said some really dumb but well meaning things in my time, too. Probably still do, if not about dialysis.

I do get tired of the transplant question about my son...I have to admit. People don't understand that transplant is not a "cure"...

Mom 3
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Sickness is a hindrance to the body, but not to the will, unless the will consent.
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Zach
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"Still crazy after all these years."

« Reply #51 on: August 26, 2006, 10:01:41 PM »

Tell that to some of the members here    >:D.
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Shades_Elfen
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« Reply #52 on: August 27, 2006, 04:23:50 AM »

Reading this kinda lifts my spirits a bit...

You see, my friends are good friends (although one can be... sticky fingered at times) and they understand my dialysis better then most Adults do!  the sheer ignorance I had to suffer from my Teachers while I was at school... well lets say i was glad that kids and teenagers are usually self-centred (in other words, they don't give a flying monkey, as long as i could still play cricket/football/whatever) on the plus side, I have MY name put onto the big achievements board in the assembly hall (funny enough its listed under "Fortitude in Adversity" ... all I did was get on with it and my life...) from now till the school gets knocked down  >:D >:D  (and on another note... the school nurse...*shudder* god... ignorance of the highest order there, and missing a couple hundred brain cells to boot!)

anyway, my friends usually come round and keep me company while I'm on dialysis (sometimes till its gone 4 in the morning!) and they understand how and why my dialysis works, how the transplant list works etc. and it helps a lot. And we usually have a blast playing our computers and such together and that  ;D.

 - Shades

P.S does anyone else here have an aversion to alcoholic drinks? I can't stand them, although i will try and enjoy some wine at Christmas and such (but never more then half a glass)
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Time been on Dialysis : 5 years and counting
"It Doesn't matter, now what happens, I will never give up the fight, as long as the voice inside tells me to stand and fight" - Myself
Panda_9
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« Reply #53 on: August 27, 2006, 05:09:17 AM »

Reading this kinda lifts my spirits a bit...

You see, my friends are good friends (although one can be... sticky fingered at times) and they understand my dialysis better then most Adults do!  the sheer ignorance I had to suffer from my Teachers while I was at school... well lets say i was glad that kids and teenagers are usually self-centred (in other words, they don't give a flying monkey, as long as i could still play cricket/football/whatever) on the plus side, I have MY name put onto the big achievements board in the assembly hall (funny enough its listed under "Fortitude in Adversity" ... all I did was get on with it and my life...) from now till the school gets knocked down  >:D >:D  (and on another note... the school nurse...*shudder* god... ignorance of the highest order there, and missing a couple hundred brain cells to boot!)

anyway, my friends usually come round and keep me company while I'm on dialysis (sometimes till its gone 4 in the morning!) and they understand how and why my dialysis works, how the transplant list works etc. and it helps a lot. And we usually have a blast playing our computers and such together and that  ;D.

 - Shades

P.S does anyone else here have an aversion to alcoholic drinks? I can't stand them, although i will try and enjoy some wine at Christmas and such (but never more then half a glass)

Shades_Elfen, youve reminded me of something that happened to me at school. I was on PD for 9 months while in yr9 and during that time I either didnt go to school, or I went, and ended up going home halfway through the day. My report card for that year was pretty much blank, and most of the comments said "too difficult to grade". Then at the end of that year I got a transplant, and continued onto yr10 the next year without repeating. As a result of the transplant, I was attending school normally and my grades came back to normal. Because of that I was in the running for the "most improved in y10" in which you got a scholarship to attend a learning seminar thing at one of the top universities here. I didnt think I would get it, but I did, and I was pretty proud. I felt sort of bad about it though as the only reason why my grades came back up was because I was actually well enough to attend school. I dont think I really spoke to my friends much about dialysis or what I was going through, except for when I was going in for surgery I told them. A couple of them were more fasinated in seeing my catheter, which I really felt uncomfortable with.
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Shades_Elfen
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« Reply #54 on: August 27, 2006, 10:30:50 AM »


Shades_Elfen, youve reminded me of something that happened to me at school. I was on PD for 9 months while in yr9 and during that time I either didnt go to school, or I went, and ended up going home halfway through the day. My report card for that year was pretty much blank, and most of the comments said "too difficult to grade". Then at the end of that year I got a transplant, and continued onto yr10 the next year without repeating. As a result of the transplant, I was attending school normally and my grades came back to normal. Because of that I was in the running for the "most improved in y10" in which you got a scholarship to attend a learning seminar thing at one of the top universities here. I didnt think I would get it, but I did, and I was pretty proud. I felt sort of bad about it though as the only reason why my grades came back up was because I was actually well enough to attend school. I dont think I really spoke to my friends much about dialysis or what I was going through, except for when I was going in for surgery I told them. A couple of them were more fasinated in seeing my catheter, which I really felt uncomfortable with.

I can relate to you there, there were days when i just wanted nothing more then to curl up and stay in bed all day (and i still get like that sometimes) and the bit about people wanting to see your catheter, THAT i can definitely relate to...

I wonder what went through my teachers minds when they saw "Ghost" come in... (Ghost is a nickname i had in school, because of how pale I was)
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Time been on Dialysis : 5 years and counting
"It Doesn't matter, now what happens, I will never give up the fight, as long as the voice inside tells me to stand and fight" - Myself
MattyBoy100
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What's dialysis?

« Reply #55 on: August 27, 2006, 01:27:58 PM »

Hi Shades,

before I was diagnosed with Alports, I used to drink like a fish!  Now though, I don`t really like the taste of alchohol at all.  Not only do I not want to use up my fluid allowance (2ltrs a day) by drinking booze but for some reason, I`ve gone right off the taste of it altogether.
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SCOTLAND NO.1
Shades_Elfen
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« Reply #56 on: August 27, 2006, 03:12:13 PM »

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...
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Time been on Dialysis : 5 years and counting
"It Doesn't matter, now what happens, I will never give up the fight, as long as the voice inside tells me to stand and fight" - Myself
goofynina
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He is the love of my life......

« Reply #57 on: August 27, 2006, 03:18:47 PM »

I do not like the taste of alcohol either (but i sure do love the effect) ::)   Every now and then i do indulge in a Margarita or 2 or 3 or 5, lol,  but not as much as i used to.  I used to slam shots of tequila like it was nobody's business and chase it down with a nice cold Budlight,  ahhhhh, the good ol' days,  now i just take shots now and then to relax (their only 2 oz.) and then only a couple of swallows of beer,  not that bad eh?  lol,   i know it's not good either but hey,  i am going to party til i cant party no more (just in moderation) ;)
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angieskidney
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« Reply #58 on: August 27, 2006, 06:41:06 PM »

When I was in Grade 10 I hardly was in school as all as I had to go on PD and the teacher wouldn't let me do it at school unless I agreed to do it in an old locker room where it had one of those doors with a vent in it made of wood that was broken. Back in 1990 when you had to do PD in a sterile environment I had to turn that room down so I was forced to do it at home. My mom was mad at the principal who tried to have me do it in the locker room because the principals exact words were, "Accept that locker room or go home! Those are your choices!" She made me feel like I was unappreciative if I didn't accept it when I was only trying to do what was best for me without getting Peritonitis!
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
Zach
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"Still crazy after all these years."

« Reply #59 on: August 27, 2006, 09:24:33 PM »

"You mean you can't pee ... where does it go?"         :o
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
angieskidney
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« Reply #60 on: August 27, 2006, 09:38:30 PM »

"You mean you can't pee ... where does it go?"         :o
lol ya I have been asked that too ;)
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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« Reply #61 on: August 28, 2006, 03:31:28 AM »

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...

What Shades hasn't told you - he wasn't quite 14 at the time >:D  It was my friend's eldest daughter's wedding and he disappeared into the crowd with her youngest daughter who's the same age.  Our bold hero was only helping himself to people's drinks when they were up dancing and trying to impress the girls.  Nothing like learning the hard way >:D
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Alports Syndrome - A Rare Breed Indeed!!!
hephziba
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« Reply #62 on: August 28, 2006, 12:43:03 PM »

Its seems to me that people don't really care how there body works, which is strange, and nobody wants to know. when I first got sick I didn't know what kidneys done really, I didn't know I had something called a peritoneum, or how red blood cells are created. I mean people have more important things to think of than how it all works, many of those people who ask stupid questions don't know simply because they have no need to know, allthough I like to think that if I had a friend with a medical problem I would learn something about it so that I would know what they were going through, it ticks me off when people don't seem to care, blissfully ignorant.

Heph
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« Reply #63 on: August 28, 2006, 05:58:02 PM »

Funny you said that heph because I was like that to before I met Angie.  I didn't know jack about kidneys and what they do and what people do when their kidneys failed.  As you so well put it, I didn't have a need to know because I myself, don't have that problem and I didn't know anyone anyone suffering from perminate kidney failure.  Obviously, I don't get out to often.  :-X

But was it blissful ignorance not knowing?  Depends on how you look at it.
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angieskidney
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« Reply #64 on: August 29, 2006, 01:31:14 AM »

Well as long as people are willing to explain to the ones who don't. I don't mind explaining .. just some of the determined people who have it in their heads that they know more than me even though I have been going through this for over 20 years now ... they are the ones who get to me :P
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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« Reply #65 on: August 29, 2006, 05:16:39 PM »

I am always ready, willing and able to listen.  It's just that it's very hard to find someone knowledgeable, willing to explain things to me that I do not understand in the best way they can.  I know that there are plenty of situations out there where the "best" way to fully understand something is to experience it for yourself but, it is not the "only" way to learn.  Which is why I try to seek answers from experienced personnel.  ;)
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Smiling for you!

« Reply #66 on: August 30, 2006, 09:33:47 AM »

When I get dumb questions my questions start..I figure if their dumb enough to ask such questions they may just give up their kidney up so I ask for theirs. LOL..They usually change the subject, which is fine with me. >:D because if they can't intellegently discuss it then move on. I find that most are aftraid your are going to ask them for a donation anyway. so they avoid the conversation.Or run time they discover you are  in kidney failure. But the stares. :o..kinda like they are expecting you to do something strange right there in front of them..Now we know we all wait till we're alone for that!  ??? :-\ >:DSassy
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« Reply #67 on: August 30, 2006, 11:49:11 AM »

" that's like the best hangover cure ever!"
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« Reply #68 on: August 30, 2006, 11:50:39 AM »

"You mean you can't pee ... where does it go?"         :o
lol ya I have been asked that too ;)

" so when you wake up you don't need to go to the bog straight away?..cool! >:(
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jbeany
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Cattitude

« Reply #69 on: October 28, 2006, 05:18:06 PM »

"Really?  Your kidneys have failed?  You don't look sick."

It's called "make-up," idiot.  How bad am I supposed to look?

Then there was the ditzy doc who piped up at my first appointment with "We should be able to get you a kidney right away!"  What?  Have you even heard of the waiting list?  I was still at about 30% function at the time - there was no need to even be thinking about transplants and dialysis yet.  (That doc didn't last long with me!)

( I know this is an old post, but I've been reading all the older ones, trying to see if I've missed any helpful info.  This one just struck me as absolutely hilarious!)
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« Reply #70 on: October 28, 2006, 05:41:25 PM »

"Really?  Your kidneys have failed?  You don't look sick."

It's called "make-up," idiot.  How bad am I supposed to look?

Then there was the ditzy doc who piped up at my first appointment with "We should be able to get you a kidney right away!"  What?  Have you even heard of the waiting list?  I was still at about 30% function at the time - there was no need to even be thinking about transplants and dialysis yet.  (That doc didn't last long with me!)

( I know this is an old post, but I've been reading all the older ones, trying to see if I've missed any helpful info.  This one just struck me as absolutely hilarious!)


Jbeany, that is why Epoman keeps the old posts here,  for all the newcomers to see...  Please dont ever hesitate to post in any "old threads"   :2thumbsup;
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kitkatz
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« Reply #71 on: October 28, 2006, 06:45:25 PM »

How about the nurse who walked into my room and when I asked if I could have a cup of tea, turns to me and says you can have tea?  I told her a little cup of tea would not kill me off. She had to get an okay, but brought me a hot cup of tea to soothe my sore throat.  I love nurses.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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Miss you so much Susie. Will always <3 you!

« Reply #72 on: October 28, 2006, 07:51:47 PM »

Ok, just read throu this whole post.  Quite interesting....  :D
One thing that makes me want to smack ppl into last week.  When I tell someone about the weight loss and they say "cool, wish I could lose weight that way".  I'm just thinking ur F'ing Nuts.  How could someone say something SO stupid? ? ?

Now this person is very close to me and it really upsets me that she says this to me often.  If I'm having an off day, tired, feeling sick, feet hurt from working, aching back...etc, etc.....she tells me..... get over it      GET OVER IT! ! !, WTF...how can you tell someone to "get over it"  gheesh....

Oh, here is a favorite.....Can't believe a friend asked this.  I told him I haven't peed in 5 yrs.
  He asked....Do you still have a penis? ?   Duh....it shriveled up and fell off! ! !  What the heck do u think  ! !!  If he wasn't twice my size I would of smacked him.   >:D

 I don't mind ppl asking me questions.  It's just the ones that ask idiotic questions and the ppl that ask the same questions over and over again.

I almost foregot.  A couple months ago I ran into an old friend at a night club.  He hadn't seen me since the osteoporosis.  When he saw that my back was curved, he told me to do yoga.  He said his back started to curve (yea, ok whatever) and he did yoga.  Presto, his back was straight again.  I told him I had osteoporosis and the vertebrae had collapsed and fused together and nothing could be done.  He just kept saying yoga would fix it.   *sigh*  some people......
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1996 - started incenter hemo
a few months later, started PD
2005 - started incenter hemo
AGAIN
  - on transplant list as of August 7, 2009.
2011/June - 15 years on "D"
Transplant - Tuesday October 18th 2011
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« Reply #73 on: October 28, 2006, 08:18:41 PM »

My favorite lately is from people wo have no idea what dialysis does to your fluid restrictions.
"Oh I thought if your kidneys were bad drinking more water would help"
"Oh you should take diuretics. You won't gain so much water weight. "
Now where is that water going to go when my cells no longer have it in them and it is in my bloodstream?
Oe when you order a glass of ice in a restaurant and they bring you half a glass of ice, or the fast food restaurants who just do not understand how to fill, really fill a cup with ice, then fill it with drink.
"But you are not getting much soda." One says to me. I said "That is the idea.  I can have the taste but not the liquid this way.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
angieskidney
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« Reply #74 on: October 29, 2006, 01:40:25 AM »

When he saw that my back was curved, he told me to do yoga.  He said his back started to curve (yea, ok whatever) and he did yoga.  Presto, his back was straight again.  I told him I had osteoporosis and the vertebrae had collapsed and fused together and nothing could be done.  He just kept saying yoga would fix it.   *sigh*  some people......
Ya I know what you mean! I have a friend that told me if I took herbal supplements that my kidney would start working again ..

I mean .. it is not the fact so much that people seem to not think logically but that even when you explain to them that they still keep going on with the first thing they were saying. Nothing you say can prove to them their mistake in how they see it. Like that guy who kept on with yoga my friend kept on with herbal supplements.

And ...

My favorite lately is from people wo have no idea what dialysis does to your fluid restrictions.
"Oh I thought if your kidneys were bad drinking more water would help"
"Oh you should take diuretics. You won't gain so much water weight. "
Now where is that water going to go when my cells no longer have it in them and it is in my bloodstream?
Or when you order a glass of ice in a restaurant and they bring you half a glass of ice, or the fast food restaurants who just do not understand how to fill, really fill a cup with ice, then fill it with drink.
"But you are not getting much soda." One says to me. I said "That is the idea. I can have the taste but not the liquid this way.

Ya my cab driver insisted that all I needed was water when I couldn't breathe because of fluid overload when they changed me from PD to HD and didn't know yet my dry weight because of all the weight loss I had when I got Peritonitis. I went home only to have to come back to the hospital (it turns out I had a 2nd bout of Pneumonia at that time) and the cab kept saying, "I can get you a glass of water. That is what you need is just some water" grrr...
And when I was at A&W and I asked for a child size drink and while waiting for my order the girl says, "want me to top it up since you've been waiting?" Well that was nice and all but the whole reason I ASKED for a CHILD size was to not have a lot. I find myself having to explain WHY a lot :(
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
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