Ignorant things people have said to you

[Desert Dancer]

I believe they're working on an I-Phone app that will do that.

Good lord! The developer who can come up with that will be a multi-gajillionaire! 

[gothiclovemonkey]

Ive had people tell me, Hell I have even had a few people in my family say the same thing.  that i use my dialysis as an excuse, that im a hypochondriac..etc... People think because we dont look sick we arent.
Im about to say something semi mean so i want to first say that i would never ever wish this crap on anyone, ever. That being said..
My boyfriends ex gf wont leave him alone, and has tried to get under my skin a few times, saying some very mean things about me, and to me. mostly stupid things (she is young and dumb!) But she said she hopes i never get a kidney and die and hopes i get 'kidney raped' whatever that is... I was sooo frustrated for a split second i thought to myself, I really wish this brat could feel my pain for just one hour. Just one hour, thats all.
Is that mean? probably, but some people just dont get it. If they could walk a min in someone else shoes, maybe they would get off there high horse!

[cassandra]

what does your BF do when she says things like that? You don't really talk with people like that do you?

[Brightsky69]

They are just jelious that they are not as tough as we are. 

[kitkatz]

I love the doc last week who walked into the room were I was waiting and announced" How is my only nocturnal patient doing?" Sigh. I am so special!

[bleija]

everytime i see my doc hes like, ur my easiest patient, he never has anything to complain at me for and i have the fewest meds, and hes about to let me stop another one... i dnt even remmebr the last time i was only taking 4 different meds,   

[cattlekid]

Every time either DH or I see my neph, he alwayys remarks how strong I am because I do home hemo.  One day he even called me "pathologically nice".   WTF?  He never saw me ream out my in-center staff for their colossal screw-ups or misinformation.   

[Cordelia]

Extended relatives who only see you at funerals (I've been to two in the last year) and all they say is, "WOW! You LOOK GREAT, I can't believe how GREAT you look" when I know damn well they are expecting to see a SICK  person talking to them.    ONE person in my family made me out to be a really, really sick looking person and because of my Mother in laws spreading around that I'm SO sick, family relatives expect the worst.    So what, I have kidneys that aren't working right, doesn't mean I'm "Sick"                 

[MomoMcSleepy]

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[MomoMcSleepy]

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[MomoMcSleepy]

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[MomoMcSleepy]

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[MomoMcSleepy]

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[MomoMcSleepy]

Ok, I read this entire thread and replied about six times...in a row.  Here is my attempt to condense it into one post.  Sorry if it's a mess, and if my stupid touchpad autocorrect the quotes and stuff.  Will try to clean this up, sorry to hog the page.  Consider this my "highlights" reel of the last six years of ignorant things people say....

when i tell ppl im on dialysis, "oh but ur so young" yeah well kidney failure doesnt really care how old u are... and why rnt u on the list yet, or have they given u a beeper?  oh and explaing peritoneal dialysis, ugh, so does the tube go to ur kidney... um no

I've gotten the "but you're so young" before.  When I hear it now, I say "yep, but I started when I was 12, so this is nothing"

I usually get that at the hospital when I go over my meds list or history and say much the same thing "well I started out from day one all messed up, and that's what happens when you're born with a bunch of birth defects.". I'm always surprised at what medical personnel will say, they are always taken aback  by me, have never heard of all my crap...
 

I got one for you all.  How about the training people, docs and nurses who decide to come in and see YOU because you are the interesting patient today?  I have had more damn trainees stop in to see me because I have a urostomy and have kidney failure than you could shake a stick at.  Can I see? Is what they ask.  Oh sure why the hell not, everyone and their damn brather has been in here already!

I know this is years old, but same with me!  I have a bouari flap as a urinary diversion (a procedure usually used for ureteral reimplant)  it looks like a mitrofanoff, and I'm always the interesting patient!  Especially my case history, persistent cloaca is super rare....though multiple times doctors have written that I had bladder extrophy, which is much less interesting, and then I've had to go back and tell them that no, I did not have that, please take it off of my record.  Gah!
 

Transplant coordinator for Wisconsin list conversation
Her: do you have any potential donors?
Me: No
Her: No family?
Me: No it's just me and my mom all my other family is distant cousins for the most part.
Her: Well, how about your mom?
Me: She's over 60, has diabetes and high blood pressure.  Has a few things against her. 
Her: Oh, well no friends or anyone that has ever offered you a kidney?
Me: Uh, no.  My boyfriend offered but he apparently has some kidney thing that would deny him.
Her: Well, does your extended family know you need a kidney?
Me: yes.
Her: And no one has offered?
Me: No.
**you can here the awkward silence for a few seconds**
Her: Oh.  Well, you're AB+, which means you can accept from anyone!  With a live donor at your age, oh, that would just be so wonderful!  Do you have a facebook account?
Me: ummm...yes?
Her: Put it on your facebook that you need a kidney! 

we were told to do that, too.  And email.  I did, and got tons of responses.  I have three (maybe 4?) potential donors so far, the tubes come in the mail like Christmas presents. I am O+.  I don't like talking about myself, it was embarrassing at first, but the mass facebook/email DID prevent a lot of dumb questions.  I included URL's to for informative websites (including ihd), and can update my facebook status without a million Questions about what's going on with my kidney.  I just have them refer to my "note" on facebook for more info.. You never know who wants to donate.  I felt slimy appealing on my own behalf like that, but I'm 32 for goodness' sakes, I want to be around a while!

Sounds like an awkward conversation (that you posted about 3 years ago, sorry), but we must become opportunists at a time like this!  I have had a mini-version, when my maternal grandmother asked about my father's family offering to donate.  My mom's sisters have called the donor line, and one of my paternal aunts said she had AB+ (so ineligible), but my dad's family, though supportive and loving, is weird and doesn't like to talk about anything, not mentioned it at all, and I felt like I had to come up with an excuse for them.  I know one aunt is AB+, though, and i'm O+.
I DID get mad when my uncle responded to my facebook plea by saying that a sibling or parents is the best match, and I interpreted it in a sing-songy, smart-aleck tone.  What pissed me off was, mom can't donate, my brother is checking on it, and my uncle was at my dad's funeral (though he's my mom's brother), and knows he can't donate since he's dead and all.  I had just explained that these people might not pan out, and re-explained (since he obviously didn't read my note) that the hospital suggested we just have everyone call in and they would decide who to test. Grr!
 

I have a story similar to this. When I first got sick, I was getting blood transfusions about once every six weeks. The hospital had a really hard time getting the IVs started, so every time my entire arm would be covered in bruises, usually on both arms. I taught in a school with some pretty rough characters. One day after class, a boy who was known to be the enforcer in the local gang stayed after class. He waited for every one to leave and said, "Hey Miss, I've noticed your arms the past couple of months. If there's a guy, I need to take care of..you just tell me where he is and he won't hurt you no more." I was speechless for a minute and then explained I wasn't being beaten at home. I was both appalled and flattered. 

I would feel the same way.  It was terribly sweet of him, in his own way.
 
 

Well, quite honestly, I get tired of the constant, "Oh, you're so young to have this happen to," comment. I'm so sick and tired of it.           Renal failure can happen at any age!!

I know this has been said a crapload of times, but I agree.  The reason it bothers me is that sometimes people seem to be accusing me of something, like they're suspicious of me (especially outside of my Neph or Uro clinic).  For example, I had a strange attack (probably a gallbladder attack) years ago and went to the ER from work.  The admitting nurse went over my meds with me and said something about all the medications, and why was I on so many?  And then, "Why are you on Ritalin?  I thought people outgrew ADHD.''  I explained that that was B---s---, and that I can't even diagnosed until I was 26, often people just develop coping mechanisms, etc.  I used swear words because I felt terrible and couldn't believe that I had to explain this to a medical professional.  I wanted to smack that idiot, but I was too weak and sick. BTW, this was way before I started on all the meds I  have now--over twice as many!  Ugh.
 

I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?

  Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own.  And may the fool suffer an anal fistula just to demonstrate to difference!

       have you ever looked at pictures of dialysis fistulas online? some of them are pretty gruesome.  I have yet to see, with my own eyes, one that looks as nasty as some that I've seen online

that's actually good to hear, Riki, thanks.  Maybe this person was just trying to be reassuring, though.  Cause they sound frightening to me.  Mine has been postponed twice and i was a little relieved.
 
 
 
 
 
 
 

 
 

[Annig83]

I got one today that just made my eyes pop out of my head....

I went to the dentist for a filling (my first one!  Thanks dialysis!  )  The hygienist was reviewing my chart before she was going to aide in the procedure with the dentist.  She was asking me the normal amount of questions when she said:

"Dialysis? What's that for again?"
"Kidney failure"
"Oh, yeah, I always confuse that with hemodialysis" 
I then explained to her exactly what error she had just made and prayed that she knew enough about dental procedures to not screw anything up in my mouth.  (Luckily everything went fine)

[JasonEb]

Okay, a little backstory first...

I have long hair, tend to be somewhat unshaven, and have a pretty beat-up looking car (runs fantastic, but after being hit 10 times in the six years I've had it, it's not pretty cosmetically).  For years now, every few months I would get pulled over for my broken taillight.  It worked, but the casing was broken.  First I was told it had to be covered, so I covered it in red tape.  Then I would get pulled over if even the slightest bit of white light was showing through.  Then I would get pulled over when the red on the tape started to lose its color.  Then  I was told that since the light couldn't be seen shining through in the daylight, I had to use some red film to cover it.  Did that.  Of course, every time I got pulled over I'd get treated like I was a fugitive from justice even though my record is spotless (not even a traffic ticked since 1995!).

Well, recently I got the taillight fixed (even though it cost more than the car is worth), mostly because I was tired of it giving the police an excuse to profile me and pull me over...and not a week later, I get pulled over for a crack in my windshield that had been there (not obstructing my view in any way...it was on the passenger side) for years and NONE of the other cops that had ever pulled me over had said anything about it.

(Side note:  The officer that pulled me over had been next to me at a stop light just prior, and had allowed two cars coming the other way to run a red light while turning left.  I mean, our light had been green for a couple seconds by the time the second car even entered the intersection.  When I questioned him on it, he merely said, "I hadn't noticed".)

Anyway, I hand him my license and insurance, and place my arm on my door.  He glanced at my fistula (been using it for 11 1/2 years so it has a ton of track marks), and after explaining the "reason" he pulled me over, he then asked, "When was the last time I 'shot up'?"

What an insensitive, accusatory question!  After (admittedly obviously angry) explaining what the fistula was for, he went back and took over 20 minutes to write up a very sparse warning for my windshield.  Boy, do you possibly think he was looking for any warrants or anything against me as hard as he could?  When he came back I angrily told him how I feel how I had been profiled over the past several years and was tired of it, how he had let the two cars run a red light just moments before, and how he himself had stopped way past the line at that same red light.  I'm totally surprised he didn't arrest me, but since I knew that since I knew I was in the right, I was willing to take a stand.

The whole point of the story is his asinine question about me shooting up.  I've had the "oh, he must be an IV drug user" glance tons of times, and it doesn't bother me (though I have thought about having a "I AM NOT A DRUG USER" t-shirt made), and even some people have asked, "what happened to your arm?" many times, but not once has anyone, let alone a public servant, actually assume I shot up drugs!

(Oh, got the windshield fixed on Thursday...wonder what "reason" they'll find to pull me over now?)

[WishIKnew]

How about, "I'm so glad you got a transplant.  How long will that last?"  Umm...  well....  I wish I knew!

 

[amanda100wilson]

And cutting her head off would be an even QUICKER way for her to lose 12 pounds!   
[/quote]

Love it!

[Southpaw]

Jason, You need to easy on the police officers. I worked in law enforcement for 10yrs.  They see something like that and its the first thing that comes to their mind.  Just be nice and explain it but be RESPECTFUL and I am sure they will give you respect back.  I'm sure they don't see many fistulas.  Just a little advice from someone who has been there.

[JasonEb]

Jason, You need to easy on the police officers. I worked in law enforcement for 10yrs.  They see something like that and its the first thing that comes to their mind.  Just be nice and explain it but be RESPECTFUL and I am sure they will give you respect back.  I'm sure they don't see many fistulas.  Just a little advice from someone who has been there.

I disagree.

Just because he is in law enforcement does not excuse him assuming the worst of me, even despite my appearance.  Do you honestly think that if I had been in a nice vehicle, in a polo shirt, and groomed to the hilt he would have asked me the same question? Or even pulled me over in the first place?

If he had asked me, "What happened to your arm?" or even, "How did you get those needle tracks?" I probably wouldn't have lost it on him.

Being a public servant should mean he should be more intelligent in the questions he asks, not less.  In this instance (I can understand how sometimes in emergency situations they have to make quick decisions) he should have understood before he accused.  "Innocent until proven guilty", remember?

The sad part is that where I used to live, I have a couple friends on the police force.  They have both told me that I am totally being profiled by the police here and it's something they do all the time.  Sadly, they say there is practically no way to prove it  as long as they have some valid reason (no matter how minor) to pull me over.

[kporter85db]

My Mother-in-law, who I love and respect very much and she feels the same about me, was talking with my brother-in-law(her son) and the subject came up about my wife and I buying a new car. My brother-in-law asked if we could afford it (he knew of our financial difficulties the last couple years while I could not work). So my mother-in-law tells him that was approved for disability several months ago.

His response was, "Well, disable me."

This happened last week. They were supposed to come over for dinner today. I cancelled.

I told my wife that if he said that in my house I would kick him out! She agreed.

BTW-He is a lazy, pot smoking idiot - if you couldn't tell.

[jbeany]

His response was, "Well, disable me."

Oh, I hate those people!  Really?  You really think being sick is a good way to live? 
I'd have asked which kidney did he want yanked out first... 

[Southpaw]

Jason, You were not profiled. The police officer had probable cause to pull you over; a broken taillight.  Any violation of the vehicle code gives them probable cause to pull you over. Maybe his questioning of you could have been a little less judgmental; but I doubt he saw your arm and thought "fistula".  Anyways I hope you understand that 99.9% of officers are there to help and enforce the law.

[Brightsky69]

I have to say…I could never be a police office. I have zero patience to deal with people. Heck, I use to work retail and was ready to slam more than my share of the general public. 

[amanda100wilson]

You think that a police officer would have better things to do than pull someone over for a cracked windshield when people are running red lights.  If a police officer asked me how long it was since I shot up, I would be pretty p***** off too.