Ignorant things people have said to you

[Quickfeet]

My ex-girlfriend (practaically married) helps with laundry sometimes and sometimes mows my yard. Most people are surprised when I tell them.

[The Noob]

you are a blessed man!

[brandi1leigh]

Right before I started dialysis a friend of mine asked why I looked so sick. I explained that I had ESRD and was starting dialysis in the upcoming week. She replied, and I quote, "I have a brother who's in dialysis. We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around."

I was shocked speechless. Talk about making me even more terrified of the upcoming week.

[YLGuy]

wow 

[Des]

Right before I started dialysis a friend of mine asked why I looked so sick. I explained that I had ESRD and was starting dialysis in the upcoming week. She replied, and I quote, "I have a brother who's in dialysis. We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around."

I was shocked speechless. Talk about making me even more terrified of the upcoming week.

This is exactly the reason why my reply to the how are you's are ussualy : fine thanks and you. People get tired of hearing about any sickness in general. Our whole lives are about this disease but we have to realise that theirs is NOT.

So... I fake it..big time. My dialysis unit knows me as the person who answers the how are you's with :Brilliant Thanks! I do not tell anyone about my diet restrictions but wiggle around it by doing the best with what I've got or bringing one dish that I have prepared , thus I will be eating from that one.   

I will answer honestly if the ocassion needs an honest answer.

[Des]

I was shocked speechless. Talk about making me even more terrified of the upcoming week.

Off topic here:   Please don't be terrified, it is hard and I still don't like it as I have only been on dialysis since April but I KNOW you will feel better and YOUR OLD SELF will return. It is all worth it. Educate yourself, read, read read anything you can get your hands on about your disease. Message me if you need to chat.

[natnnnat]

We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around

Jeez!  Argh!!! What a [string of deleted potential adjectives].  Really does show how dialysis separates the wheat from the chaff.

[The Noob]

sis asked me how we were holding up, i said "never frickin better!"
LOL she understood exactly.

[cariad]

Right before I started dialysis a friend of mine asked why I looked so sick. I explained that I had ESRD and was starting dialysis in the upcoming week. She replied, and I quote, "I have a brother who's in dialysis. We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around."

I was shocked speechless. Talk about making me even more terrified of the upcoming week.

wow 

I second that wow.

[Bajanne]

I third that WOW!  I remember that when my brother (now passed away) was on dialysis, he was treated with love and care at our family gatherings.  Everyone was always glad to see him there.   I have never heard anyone with anything negative.  In fact, now that I am myself on dialysis, I always wish I had heard more from him!

[brandi1leigh]

I was shocked speechless. Talk about making me even more terrified of the upcoming week.

Off topic here:   Please don't be terrified, it is hard and I still don't like it as I have only been on dialysis since April but I KNOW you will feel better and YOUR OLD SELF will return. It is all worth it. Educate yourself, read, read read anything you can get your hands on about your disease. Message me if you need to chat.

Thanks! I'm now on my 5th month and starting to adjust. However at the time this happened I was scared and didn't know ANYONE who knew anything about dialysis. To have this be the first story was distressing to say the least!

[RichardMEL]

WOW is right. That's horrible!

My family are very understanding (well mostly.. I still think  to my father who gave me a big bottle of champagne for my birthday a few years ago... wtf???) and know when they invite me for a meal that some foods are out, and I won't be able to drink much. That really helps but I try my best to organise myself in that respect and not expect others to prepare for me.. so if there's food I shouldn't have much of I don't tell them off for making the potato surprise with extra tomato and pineapple, but just pick the bits I feel comfortable having, and explain why I can't have whatever. That sort of thing hasn't really been an issue though fortunately.

Amazing that someone would be cut off like that because their needs are such a "burden" and "too depressing"

[bette1]

Thank Goodness that's not my family.  I can't imagine being that insensitive to a family member.   My whole family went on a salt free diet with me when I first started dialysis - I was living with my parents at the time. 

I've done 10 years on dialysis and It's not that bad.  Your body adjusts and you start to feel better.

[CharmedMist]

Unbelievable! How horrible that they avoid him because he's too "depressing." I'd have to guess none of them have bothered to sign a donor's card.
(Long before my husband got sick, we'd both signed a donor's card, we also sat our kids down and discussed it with them and all three agreed, even before daddy was sick, that if anything ever happened to them, they'd give any part of their body that could be used to help others.)

As for family, my hubby calls MY mom to "talk to someone who really cares about me" when he has a hard time with doctors and he's already shared with me and needs another person to share to, I'm glad they have a relationship where when my mother tells him "I love you, Alan" he knows it's true.

Even as the care giver, I get the stupid questions for my husband's illness, things about "losing weight" or "must be nice to not have to work" and of course the "is he on the list?" and "how is he feeling?"  How do you think he feels? He feels sick!

[carla13]

WOW.That is harsh. It's odd how the people who don't want to hear about your illness are the first to call you up to moan if they have any kind of medical problem. I'm very sympathetic to my friends who call me up to complain that they're under the weather, or having some trouble with their health, as I know what it's like to feel rubbish. I don't however talk about my illness to them because I can tell they don't want to know.
xx

[RainingRoses]

My pet peeve?  Friends tell me how great and how wonderful I look.  Inference:  it can't be "that" bad.

[romanyscarlett]

I showed a picture of a chocolate cake I'd baked. Her response was:

"Since you were a bad friend and didn't come to my birthday party or send me a present, you have to make me a cake like that"

My reason for not attending her birthday party? I'd had a rugby ball sized kidney removed and was recovering from surgery.

For the record she didn't once come and see me in hospital or at home as I recovered. Now that I think of it, she didn't do anything for my birthday either 

[Riki]

Wow.. I stayed up all night reading this thread.  I laughed, I sympathized with some posts, and I wondered why the heck I stopped coming to this site.

I have a few to add.

About the end of July, 2008,I had my first bout ever with peritonitis. At that point, I'd been on an off dialysis for about 18 years, and was a little more than 4 years in on the stretch of dialysis I'm on now.  I was treated at home with antibiotics, both orally and in the dineal. Two weeks after this, I had to go out of province for my home dialysis clinic visit.  On the four hour drive there, I started feeling sick again, the pain and nausea.  When I was talking with the nurse, I threw up on him.  He was really good about it, but I felt bad.  Anyway, the doctor that saw me that day was one who originally believed I was sabotaging kidneys and tried to keep me off the transplant list (that's another story entirely).  My little brother, who is six years younger than me, had driven me to clinic that day, and he was in the room when the doctor came in to see me.  She looked at me, then the chart, then said, "hmm, two instances of peritonitis in as many weeks.  Suspicious, isn't it?"  I knew what she was implying, and so did my brother, and he didn't know the history.  I saw him clenching his fist, and I saw his eyes, which are a very pretty green, got really dark, which they do when he gets mad.  I think that if the doctor had been male, my brother would have hit her.

And this one, a doozy.  Because of the peritonitis, I am now on hemo.  I was in the hospital for a couple of weeks, over Christmas 2008, fighting the third and final bout with it, and they transported me home by ambulance to my local hospital.  We got in late, so I was just put in a room and allowed to go to bed.  My GP came in to see me early the next morning.  I had only been on hemo about a week at that point, and they were still trying to figure out what my dry weight was.  My legs were twice the size they normally were, and I was using a walker to get around.  After I explained all of this to him, with my mom sitting there (I love my mom, btw.  She's my hero) he told me that if my weight was affecting my mobility, I should consider trying to lose some of it.  It just shocked Mom and I so bad that I'm sure we both would have had to have our jaws picked up off the floor with a shovel.  He discharged me and Mom took me to dialysis.  I haven't seen him since.

sorry if that's a bit long winded

[MooseMom]

I have a half-brother, and I guess his son is my half-nephew...  Anyway, I don't see much of him; he is living in San Antonio and working on the paper.  I saw him at my mom's funeral, and subsequently we have emailed each other a couple of times.  He asked in a convuluted way what my health situation was, and I was very straightforward and explained that I'm trying to get on the transplant list, that I am not on dialysis yet but that I am headed that way, probably sooner rather than later.  He wrote back and said something along the lines of how good it will be when I feel better after each WEEKLY treatment.  "Weekly dialysis?  You must be JOKING," I replied.  I then went on to straighten out THAT gross misconception.  I have no idea where he got the idea that you could just pop on the machine once a week and then life would be just grand.   The worst part is that this guy is one of the smartest people I know...

[okarol]

A friend had heard about Jenna's rejection and said "She can get another kidney, right?"

I said "Yes but the wait in Los Angeles is really long."

He said "Ok, good she can get one."

(Yeah, dumbass, how about YOURS??) 

I shouldn't get annoyed. I didn't know squat about dialysis or transplants before this hit Jenna. 

[chook]

An acquaintance (and former workmate) heard via the local grapevine I was on PD and after asking how I was doing, proceeded to tell me all about a friend of hers that had been on PD and died from an infection. Like I wasn't aware this could happen and needed reminding!

Love reading all this - some are just too sad and some are so funny

[Kitty Cat]

Back in March, my husband was rushed into the hospital ER because of severe belly pain. Going back a little, he had his kidneys removed in October 2009, one was cancerous and the other was also showing signs of cancer. (Thankfully he's beat that) so while he was in the ER, they sent in these 2 young guys to try and see what was going on in his belly, in case of a bleed, etc.

While they had that little machine, running it over his belly (for the life of me I can't remember what it was called) they were very quiet and this had gone on quite a while, we hadn't thought of anything until one of them said "well, your kidneys look good" My husband jumped on that and said that's impossible, I don't have kidneys. This kicked off a discussion because the 2 young guys didn't know kidneys could be removed. We had a good laugh about it and the 2 guys ran for the hills. Never saw them again!!!     

[AlasdairUK]

Hi guys, it's the 5th Birthday, so thought I would log on again, it's been a while - sorry!

Although I have had my recent kidney for 2 years now, I had my fistula removed about 18months back as the blood flow was pretty high. While I was about to have it removed the surgeon asked when I last dialysed, so, I told him it was about 6 months back, he decided it might be a good idea for me to have a quick session before he operated (just to be safe), although my blood levels all looked good (I should hope so as my new kidney had been working well), the anaesthetic might have an impact on it.

I then thought, you are going to do what, with your knife....... to me?

Who knew that these crazy dialysis quotes would continue after you stopped going on dialysis.

Cheers,
Al

[Zach]

Good to have you back for the anniversary, AlasdairUK!
 

[senior-chief]

   Thanks Al,  you give me the courage too keep on tiring to learn woodworking!!!  I've been on the machine since 2005 1/ 1/2 years centers and 3/ 1/2 on Nexstage.  Have been a the transplant list for three years.  I served 30 years U.S. Navy, enjoyed most of the time.  Life moves along, so I figure be postive, enjoy people and try to be a good hubbie and grandpa....  My rugrats are on their own..   Ha-Ha !!  Mike