Ignorant things people have said to you

[Krisna]

He's a jerk AND an idiot, though.

I can relate.

Well, this is gonna be me telling on myself but...I never did the one on my license until I was in my mid 20's.  I always figured since I was ill they wouldn't be able to use anything anyway.  But then after I thought abt it for a while, I decided I was being selfish and even if they only use me for research I should sign the donor card!  But I also think my family would've signed the consent anyway! 

[Krisna]

Okay this one's kinda funny because of who said it to me!

One Saturday in Spring of 1997 my hubby was working and I was babysitting my oldest niece so I went out to see my dad.  I had been on dialysis for abt a year at this point.  We decided to go for a drive up to Chinook Pass at Mt. Rainier.  As we're getting ready to go out the door my dad looks at me and asks, "Do you need to use the bathroom?"  (Now I knew he was asking me if I needed to pee.)  I looked at him and said, "That was a STUPID question!"  And he just looked at me like he was confused!  Then he realized what he had just asked and started  !  I still give him a hard time abt that one!  lol

[MattyBoy100]

My father wanted me to go with him to a dinner party one of his neighbours was having.  To avoid any embarassment on my part, we asked her what food she would be serving to make sure it was suitable for me.  The neighbour was very nice about it and made something different for me - it was just some cold meat and salad as the main course was a chicken in tomato sauce which I can't have (cos of the tomatoes).  All was going well at the dinner until the host said to me she had put my food to one side.  At this point one of the guests (a middle aged busy body) said to me very aggressively "What's the matter with you, have you got a food allergy?".  The conversation in the room stopped dead as some guests knew about me and some did not.  I just said "No, I have kidney failure.".  Well, you could cut the silence in the room with a knife.

Me and my Dad got out of there pretty sharply after that.  I thought it was very rude to demand to know what is wrong with someone in that manner and it put me on the spot as well. 

[Adam_W]

I was at the hospital today having an abdominal CT scan for some unusual pain that I'm having. The tech asked me if I've had any blood in my urine, and I told him that I don't really pee anymore because I have kidney failure and I'm on dialysis. He then asked me "So, is your actual kidney function OK?" I was like "uh.....no, I'm on dialysis." He seemed kind of embarrassed with himself and he was very kindly asking me things about dialysis and how my treatment is going. An ignorant question ended up turning into a pleasant conversation, and another medical professional learned a little about "our" world.

Adam   

[Bajanne]

It really shows that the professionals have not done a good job about educating the masses.  Almost all of the other chronic diseases, people have at least some idea.  But every time the topic dialysis comes up, I have to do the Dialysis 101 crash course for people to understand.  "Ohhhhhhh, I didn't know that" is the standard response.  The other response, with unbelief "Four hours???!!!!!"  and response number three "You need to drink a lot of water.  It will flush out your kidney" (you mean it might flush me out of this life).

[goofynina]

OMG, This morning, as Sam was getting ready for work he asked me "do i have to go in today?" and i asked him "do i have to dialyze today" and he said in his sweetest and caring voice "honey, if you want to get better you do"  OMG, WTF??  I couldnt help but cry my eyes out, he didnt realize what he said wrong and i had to openly say it,  I WILL NEVER GET BETTER, BUT I WILL GET WORSE, THIS IS IT FOR ME, FOR THE REST OF MY LIFE,  i know he was just trying to make me feel better and he really didnt know any different (i guess) all he could do was hug me and said, "you have me", and i have to admit, that did make me feel a little better but geeeze, did he think all this time i was actually going to get better some day, ohhhhhh what a way to start my day 

[paris]

Oh, Susie, I am sorry.  My husband doesn't get it at all.  He thinks I throw up because I ate something spicy.  He thinks I can't sleep because maybe I am cold or hot.  He doesn't go to the nephs office with me.  He has gone to most transplant evaluation visits, but not all.  He drops me off for the 6 hours of iron infusions.  He just can't handle the truth.  He is a good guy and we have spent our lives together.  Sometimes he says the dumbest things---like Sam did----and I just want to SCREAM!!!!  He says all the time  "wish I didn't have to go to work" and I want to say "oh my God, I wish I could!"   That is why Vegas was incredible-----nothing had to be explained.  Everyone understood!

So go ahead and cry.   Then hug Sam when he gets home. He is there and isn't going anywhere.  Even those who love us will  never really fully understand and probably because they love us, they just want us to be well.   Wish we could go get lunch together and just hang out today!   Love ya!

[goofynina]

Thank you so much Paris, i love you 

[Sunny]

Our spouses mean well, don't they. They are our closest allies and yet, even they don't completely understand what it is to have kidney disease. I often need to remind my husband I would much rather be able to go to work than be on disability. If only I could have my old life back. If only...

[paris]

Well said Sunny ........  If only....

[SheilaW]

When people learn that I don't make  urine, they (sometimes) say something along the lines of: "Wow!  I'm jealous!  It must be nice to not have to take time out of your day every couple of hours to pee!"  Um...yeah....it's absolutely wonderful getting stuck in the arm 3x/week as a trade off.   

My mom said, as I was drinking from my 1 liter bottle: "I can't believe you drink so much and don't pee.  It's amazing!"  Yeah, it's just amazing to collect the fluids in organs and tissue and blood as opposed to my bladder where I can expel it easily.

Another: "How long will you be on dialysis?"  "Until I get a transplant."  "How long will that take?"  "Well it can be almost any time or never."  "How do you live with not knowing?!"  Um....pretty much the same way you live with not knowing when your time is up, dummy!"

And my favorite, once again from my mom.  (First a bit of history...she's been a drug user, alcoholic, smoker, has had kidney stones a lot, and has had Hepatitis B, among other health and psychological issues): "Well if I can't donate to you when the time comes, I still want to do a donation.  I want to donate my kidney to someone!"  I know her intentions are good, but I've tried telling her repeatedly that with her issues, she won't be a suitable donor and they won't take it.  She doesn't believe me and tells me at least once a week that she wants to donate. 

[SheilaW]

One more I forgot.

I went to the doctor about a month ago because I had bronchitis.  While I was there the nurse came over and started cuffing up my left arm for BP.  I told her to stop, that she couldn't use it because I have a fistula.  She looked at me dumbly, as she continued to strap my arm and asked "What's a fistula?"   

I got her to stop before she started applying pressure, but damn! 

[Bajanne]

One more I forgot.

I went to the doctor about a month ago because I had bronchitis.  While I was there the nurse came over and started cuffing up my left arm for BP.  I told her to stop, that she couldn't use it because I have a fistula.  She looked at me dumbly, as she continued to strap my arm and asked "What's a fistula?"   

I got her to stop before she started applying pressure, but damn! 

Now, Sheila, you must be kidding.  Is that nurse for real?

[SheilaW]

I wish I could say I was kidding.  The only (and not very good) defense I can come up with on that one is that she works for a doctor's office with just family practitioners.  But even then she should have known what a fistula was....

[BigSteve]

Are you sure she was a nurse? I encounter many people in doctors'
office doing inverviews or taking my vitals who act like Bryman School
rejects.

[2_DallasCowboys]

Here is a good one!!

The neph who goes to my husband's clinic-
(niether one of us like any of the nephs in
this group, but we are captured) was making
his rounds, went to Les's chair, How Are You??
B.S, when my hubby told him he just got done
painting our kitchen, hall and living/ding room
The Dr looked at him and said "I never heard of
a dialysis patient  being able to paint"  HEL-LOOO!!!
this guy is a Dr, and instead of saying that's great,
you are doing well, etc-  it is always a downer.

I don't see him, but would love to be able to tell him
about thoseof you who work out, teach, ride bikes, etc
I think he needs an awakening

Anne

[jbeany]

OMG, This morning, as Sam was getting ready for work he asked me "do i have to go in today?" and i asked him "do i have to dialyze today" and he said in his sweetest and caring voice "honey, if you want to get better you do"  OMG, WTF??  I couldnt help but cry my eyes out, he didnt realize what he said wrong and i had to openly say it,  I WILL NEVER GET BETTER, BUT I WILL GET WORSE, THIS IS IT FOR ME, FOR THE REST OF MY LIFE,  i know he was just trying to make me feel better and he really didnt know any different (i guess) all he could do was hug me and said, "you have me", and i have to admit, that did make me feel a little better but geeeze, did he think all this time i was actually going to get better some day, ohhhhhh what a way to start my day 

I got a "I hope you get well soon." today from a woman whose husband had been on PD for years before he died.  I thought about you, Nina, while I was thanking her for her very kind, totally ludicrous thought!

[kellyt]

I got the "So if you get a transplant your done, right?  You're cured?"  question last week.  I wanted so badley to say "YES!!"...and mean it.

[Chris]

I got the "So if you get a transplant your done, right?  You're cured?"  question last week.  I wanted so badley to say "YES!!"...and mean it.

I get that too with having a pancreas transplant also. Cured from diabetes, yeah right!

[angela515]

That would be the perfect question to be able to say "yes" to.

[Jamesw]

Here is the very worst I've had, and it's from another kidney patient.
"You're lucky to get kidney disease so young, you can get a transplant. They won't let me have one because I'm eighty five."
That's nice to hear from someone who's been relatively healthy their whole life. 

[Chris]

Here is the very worst I've had, and it's from another kidney patient.
"You're lucky to get kidney disease so young, you can get a transplant. They won't let me have one because I'm eighty five."
That's nice to hear from someone who's been relatively healthy their whole life. 

Uggggghhhhhh!

[goofynina]

I got the "So if you get a transplant your done, right?  You're cured?"  question last week.  I wanted so badley to say "YES!!"...and mean it.

I get that too with having a pancreas transplant also. Cured from diabetes, yeah right!

I said sorry 

[Krisna]

When people learn that I don't make  urine, they (sometimes) say something along the lines of: "Wow!  I'm jealous!  It must be nice to not have to take time out of your day every couple of hours to pee!"   

I made a kinda joke with the people I'm close to abt that one by saying stuff like, "Go for me too!"  When they announce they are going to the bathroom.

[Krisna]

Okay, I am sick to death of this...

When people, (yes even extended family members who know my kidneys failed when I was 7), find out I've 4 transplant of the same organ.  The ask, "Why so many?"  And also, "What didn't they work?"