Ignorant things people have said to you

[KICKSTART]

My 'best friend' of 30 years decided to txt me today (after a long break) and said 'how ya doin?' I replied, not so bad but im on morphine now and waiting for those dreaded ct scan results , to see what they found. Her reply ..'ok let me know how you get on'. (she only lives 15 mins drive from me as well!)  Mate !

[Rerun]

A (male) friend of mine went to our family get together last night at a buffet.  He was sitting next to my brother's girl friend and my friend told me later they were picking out people and trying to guess what they were talking about.  I then asked what they said about me.  "Oh, you were talking about death and dying."   

Really?   

He got to go home, take a pee, and sleep in his own bed.  I got to go to the center, get 2 needles jammed in my arm and try and sleep in a plastic recliner and then have to pack up all my stuff at 3:30 in the morning and go home.  People have no idea how close to death we are everyday.  I may get hit by a bus or I may not.  I WILL get 2 needles jammed in my arm 3 times a week for the rest of my life. 

[MooseMom]

Rerun, it's just all so unfair.

[KICKSTART]

Rerun ,    People will never get it!

[okarol]

Not sure which is worse, them saying it or your "friend" repeating it. 

 

[romanyscarlett]

Rerun, that sounds horrible

I'm just posting to agree with Riki. I get that ALL the time and I hate it when people say "oh you're too young to be here" when I get to the centre. It's usually the hospital drivers picking up the other patients so I know they don't "get" it. I also know they mean well when they say it but in fact it just reinforces how tragic the situation is.

I've only been on dialysis for a few months so I have no idea how you cope with statements like that Riki!

[Riki]

Rerun, that sounds horrible

I'm just posting to agree with Riki. I get that ALL the time and I hate it when people say "oh you're too young to be here" when I get to the centre. It's usually the hospital drivers picking up the other patients so I know they don't "get" it. I also know they mean well when they say it but in fact it just reinforces how tragic the situation is.

I've only been on dialysis for a few months so I have no idea how you cope with statements like that Riki!

you get used to it over time.  When I was about 15, a year or so after my first transplant, a lady from the kidney foundation asked me how I liked being home schooled.  I just kind of looked at her, cuz I've never been home schooled.  She told me that I had to be home schooled because there was no way I could do dialysis and go to school and keep up like I did.  I remember asking her why.  I had been on PD, and was actually the first child on home dialysis in my province, so I kind of understand her reasoning, but I was a little offended, because the reason I kept up was that I worked my ass off, and had help from child life specialists when I was in hospital to keep up, and she didn't seem to get that.

[brandi1leigh]

I was 26 when I started D and was teaching French at a university in Nova Scotia, Canada.  A student approached me one day and told me that some students had noticed the "track" marks on my arm and were wondering if I was an addict.  I was actually grateful for this person's honesty and it gave me a chance to talk to my class about dialysis and organ donation.  A few students opted to check me out at home hooked up to the machine ( I ended up tutoring one of them during my first hour on) and quite a few wanted to know how to sign up to become organ donors.
 People often say rubbish because they're horribly uncomfortable...if you were a heroin addict you could go to detox and get off the heroin...getting off D is tricky too...maybe he'd like to donate a kidney so you wouldn't have to needle yourself any more  (fat chance right?).

Then of course you could make him feel really bad by telling him about how damned hard it is to be so young (never easy mind you, no matter our age) and have to go through all you do.   

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. 

[gothiclovemonkey]

Pretty much get the same as everyone else...
I can handle the people asking me dumb questions. my brother is always telling me he wishes he could switch places with me. it annoys the hell out of me.

[FindingNeverland]

I haven't really had anyone say anything like what you've all experienced but I must say that I am tired of being treated like a four year old. I understand that my family is worried about me and wants to know how I'm doing but I am tired of playing 20 questions every day and its literally every day. I'm grateful to have such a caring and involved family, I really am but enough is enough, I just don't have the heart to say anything because I don't want to hurt their feelings or seem ungrateful. 

[okarol]

Jami, you remind me of Jenna. I am sure she feels like we are always focusing on her health. It's hard to break the habit because we caregivers care so much and worry too, and that's been the pattern for a long time. I am trying though, to let her figure stuff out on her own, and she seems to be taking more responsibility, so I think it's working.

[Rerun]

Last night at D, I over heard the head nurse telling a patient that dialysis wasn't "that big of a deal" and that Cujo form Entertainment Tonight was portraying dialysis as such a grueling experience..... and it's not.   

Really?  She sees us during treatment but she does not see us at home.  She does not know how hard it is when we are not actually at treatment.  Does she think we enjoy cramping, nausea, and vomiting?  Having 2 giant needles jammed into our arms 3x a week?

I lit into her!  I can say chemo is no big deal.... only because I've never been through it.  But I still have some sense of reality that it is a huge deal!   

[jbeany]

I haven't really had anyone say anything like what you've all experienced but I must say that I am tired of being treated like a four year old. I understand that my family is worried about me and wants to know how I'm doing but I am tired of playing 20 questions every day and its literally every day. I'm grateful to have such a caring and involved family, I really am but enough is enough, I just don't have the heart to say anything because I don't want to hurt their feelings or seem ungrateful. 

I remember how frustrated I would get as a teenager when family and friends got together.  All the other kids got asked about their college plans, school, their sports teams, their part time jobs, even their new driver's permits.  All they ever asked me was about my diabetes.  As if that was the only thing that mattered, and the only thing that defined me. 

[MooseMom]

This might be a bit ungracious...well, it IS ungracious, but it just rubbed me the wrong way.  I got an email from a cousin the other day asking about my plans for T-giving (we're planning a family reunion down south), and she said that she was praying for my health.  She and her family are all church going people, and I respect that, and I am grateful for any and all prayers, but her mother was on dialysis for many years until she died, and this cousin has a bunch of brothers and sisters and sons and daughters and nieces and nephews, and I just thought that while telling me she was praying for me might make HER feel good, what would REALLY be nice would be for someone to volunteer to at least be tested or at least give a moment's thought to being a donor.  I know that is selfish and ungracious, but how is it that people who talk so much about going to church (one cousin's husband is actually training to be a preacher!) just ignore the fact that a family member is ill and needs a kidney?  Do they really think that praying for me is somehow going to make a kidney magically appear?  If you don't want to donate or even be tested, that is certainly fair enough, but don't be thinkiing that God is going to take care of it.  Maybe he's looking to YOU to take care of it.

Not very nice of me, I know. I have another cousin who needed a new kidney, and no one in the family stepped up for him, either.  His donor was the husband of a childhood friend, and he had never even met my cousin.  My family should be ashamed for ignoring him, too.

[FindingNeverland]

I remember how frustrated I would get as a teenager when family and friends got together.  All the other kids got asked about their college plans, school, their sports teams, their part time jobs, even their new driver's permits.  All they ever asked me was about my diabetes.  As if that was the only thing that mattered, and the only thing that defined me.

Exactly, and like I said I really do appreciate their concern. But its like, I'm trying to open a store on etsy.com to sell these cases that I make (http://i55.tinypic.com/24wepdx.jpg), it would be nice if they showed some interest in it.

[Riki]

Oh, MooseMom.. I know EXACTLY what you mean.  My mom has 4 siblings, and my dad has 6, so there's a gaggle of cousins on both sides of the family.  They all know that I'm on dialysis, and they all know how hard I've been taking it.

It was about this time last year, after having a chat with my mom about it, I wrote a letter to my cousins and sent it out on facebook.  Now, I know some people would think facebook is a crude way of doing it, but that's just how my family communicates.  I got one reply back, from one cousin.  She asked how they test, cuz that's all I asked, for them to be tested.  I told her it was just a blood test.  That was the last I heard from any of them.  It just burns me, because if anything happens with any of them, I'm expected to help, but none of them will step up to help me.

My little brother has never been tested, though I would like him to be.  My fear with him is that, if he was a match, he would go through with all the other assessments, but I know he's afraid oft he surgery, and I"m afraid they may pick up on that and think he's being coerced.

[MooseMom]

Well this is why, riki, that I'll just take my chances with a cadaveric kidney.  This way I'll know that someone gave me a kidney out of true compassion and generosity of spirit.

I know that people may be afraid, but you know what?  I'm afraid, too.  I'm supposed to have Thanksgiving with these people, and I honestly don't know if I can go through with it. 

[Riki]

I've had 2 cadaveric kidneys, and neither lasted me very long.  I've been told, and I've seen it first hand, that a living donor kidney will last longer.  Albert Einstein said that insanity is doing the same thing over and over again and expecting different results, and that's what I've been doing.  It's time to try something else.  I've been waiting almost 6 and a half years now and, especially in the last 2 or 3 years, I've been watching my mental health slide, and it's scaring the hell out of me.  I can't talk to my nephrologist about it because he doesn't do clinic visits with the HD patients anymore, and I'm certainly not going to ask him about it in the unit, when there's 4 nurses, 2 support staff, and at least 5 other patients in earshot.  I don't want to go to my GP, because he's a complete asshole.  I went to him before with questions when I started noticing things.  It got me worried because I knew there was a history of mental illness in my family, but he brushed it off and said there was nothing wrong with me.  I've been suicidal before, and I don't want to go down that road again.  I just want to get one thing under control so I can focus on the other.

[MooseMom]

Riki, it sure seems like your healthcare team has failed you.  I can't believe they are all so cavalier about your health.

[gothiclovemonkey]

Riki, im sorry ur having mental troubles, so am i. I ended up going to mental health and hooking myself up with a therapist. its not ideal thing to have to do, but its better than letting urself slip into that scary place.

I wouldnt want a kidny from family, they would be likely to hold that over me. "You have to... I gave you my kidney"
Ive had a few people say they would give me a kidney if they could... but that was after i told them I cant have a transplant lol Wonder if they still will when I can get one? Im only 15 lbs from the weight they had said they wanted me at!

[Riki]

you have to lose weight for a transplant?  I've never been told that, and I weigh over 200lbs.  I have been told that if I look like I'm trying to be more active, it looks good to the transplant team

[gothiclovemonkey]

according to my neph i am...
I WAS alot more, but ive lost like close to 90lbs, (i think more, but still have fluid weight on) im 99k now
When i first saw him, he said ur too fat for transplant they would rather give a kidney to a drug addict than a fat person, u should starve yourself. I highly doubt u will ever lose enough weight for a transplant, ive been a neph for *blah* years and not once had a patient do it.

[Riki]

what a jackass.. I can't believe he said that too you.. you're at 99kg?  my dry weight is 100.5.. When I was on PD my dry weight was 108kgs, so I have lost some, but I think I was carrying much more fluid then, and not just the 2 litres of dineal in the abdomen.

I've never lost weight, unless I was sick.  I used to live in downtown Charlottetown, and I walked everywhere because I didn't drive and at the time there was no public transportation.  With all the walking I did, I didn't lose anything.  I toned up, though, and what I probably would have lost in fat content I got back in muscle mass

I looked great, I felt great, and I lost the kidney anyway... so you never know..

[gothiclovemonkey]

Yes he is a jackass....
This is the same dude that when i was on PD, I had told him somethings not right, my belly is swollen... I had 54lbs of fluid on me!! He told me... oh thats just ur normal anatomy... Excuse me? I think i know my own fatroll buddy......
Yes i went out at 99 saturday, and my ankles are still swollen im still having trouble breathing too, so im sure i still have more fluid...
To top it all off, hes got me as non-compliant (yes at one point i was... but for over a year now ive been doing really well....) AND he told me that, even if i lose the weight he doesnt thnk im mentally stable (i have some mental diagnosises) enough for a transplant???
i think its ridiculous, and my psychiatrist said that its the dialysis, and my neph making me crazy HAHA i liked that... I agreed wholeheartedly, between that and the other things that we go thru with D, its no wonder how nuts we can get

[tbarrett2533]

The following is a list of all of the really stupid things people have said to me re: Dialysis/ESRD, (and what I really wanted to say in response, but didn't)  please feel free to add your own! I can't wait to read the responses 

Please note that I am paraphrasing as there is no way that I could ever remember EXACTLY what people have said to me:

1.  "You don't look sick"   (umm you don't look stupid, but you are  )
2.  "Just go get a kidney transplant." (sure I will go right on over to Walgreens and pick one up after all I think they are on sale this week  )
3.  "You don't look like you have kidney failure."  (Yea I didn't know that Kidney failure has a look hmmmm  )
4.  on seeing someone that I have met just once or twice, "Oh yea you are the girl with Kidney failure."  (oh yea you are the idiot  )
5.  "Since you have kidney failure, maybe you can tell me why my back hurts everytime I brush my teeth or go to the bathroom." (I don't even know what to say here other than 'WOW you are the biggest idiot that I have yet to meet.'  )
6.  "It can't be that bad." (Here let me tie you down to this chair and then make you sit there for the next 5 hours and take away food and drink and never give it back to you, and please please let me stab you in the arm with a 15 gauge needles and pray that you infiltrate  )
7.  "Let me know if there is anything that you need." (yep just give me your kidney and I will be on my way thanks  )
8.  "There are people out there worst off than you." (you mean like you? a complete dumb a**  )
9.  "It could be worst." (screw you  )
10.  "What is that ugly thing on your arm?" (What is that ugly thing on your shoulders? oh yea it's your face  )
11.  "Stay positive." (just get away from me with all your working organs please and thank you  )
12.  "What can/can't you eat?" (cardboard's good thanks  )
13.  "Your on Kidney dialysis?" (Uggggghhhhhhh  )

And this is all that I can think of right now.... although I know there is more I am just having a brain fart 


 


Edited: Topics Merged - okarol/admin (Thanks Tracy!)