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Author Topic: Ignorant things people have said to you  (Read 469392 times)
UkrainianTracksuit
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« Reply #1525 on: September 08, 2013, 03:12:09 PM »


Sometimes it's just frustrating. You can't understand this disease until you have it. Even people who genuinely care and try to understand can never truly get it. I work 10+ hour days.  To be able to do that I basically come home every night and go straight to bed. I rarely miss work, and when I do it's because I'm at a doctors. Every single day I feel sick and tired. Every. Single. Day.

I completely understand where you are coming from concerning being sick and tired every day at work.  Every day and not missing work too!  A big kudos to you though.   :bow;  Also, I become frustrated with those who “skip work” when they’ve stayed out too late.  Being young, co-workers in the past automatically thought this was also the reason I looked physically sick.  “You didn’t sleep much last night?”  “Hard night out?”  Working in government at the time with 2 hour lunch meetings and able to pick our own office hours, I felt I could hide the tiredness with being annoyingly chipper and lots of concealer.  It didn’t work.   ::)  It didn’t work especially on the days of meltdown nausea.  Finally, after all the comments of “No, I’ve been sleeping well!  I’ve been going to sleep at 9 PM!”, I decided to just spill the beans.  Once I said that I had kidney failure, they stopped with the ignorant comments but kept on with the “You look tired.” statements.

The issue has followed me back into the world of academia.  We have many different guest lecturers coming in.  During a lecture by a very respected economist, I kept yawning.  He noticed every yawn.  I was interested in what he had to say but I just wasn’t feeling very good that day.  When he picked up his papers to leave (me, sitting there in the front row like the geek I am), he said to me very abruptly, “Sorry for wasting your time.”  I wanted to chase him down the hall yelling “You don’t understanddd!”   :stressed;
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KatieV
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« Reply #1526 on: September 09, 2013, 08:34:10 AM »

I have been on dialysis (for the second time) since October 2011 with NxStage....  Since the end of February of this year, I've been doing Nocturnal NxStage....

Last week I received a questionaire from my *INSURANCE COMPANY* asking if the treatment on 5/1/2013 with the Hortense and Louis Rubin Dialysis Center was due to an accident or injury!

I am a combination of laughing and pissed.  They'll be getting a call in a few minutes to "sort it out".   :urcrazy;
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
JasonEb
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« Reply #1527 on: September 16, 2013, 10:04:26 AM »

I'm disappointed when I see Renal Patients agreeing with ignorant assholes.

Even a broken clock is right twice a day.

I agree with ignorant assholes all the time, if they are right.

I also pointed out that I didn't agree with all, nor did I agree in the method with which they expressed themselves, plus I agree with parts of your post.  It's not an all-or-nothing world.  I'm not "with you or against" you or them, merely sharing my observations of the post that you put forth for public consumption.  I have no stake in your game.

Quote
Remember, this was UNIT SPECIFIC.

That's how my unit operated, so that's what rules they had to follow.

Well, I'd love to be at your unit, then.  The perks sound pretty good (granted, you never state anything about the important thing...you know, the actual quality of care).  The majority of your challenge (not all, but a good part of it) is basically just asking your peers to do without some of the modern comforts that they normally have.  Actually, you're not even asking that.  You are asking them to have only a limited amount of options of modern comforts/entertainment.

Quote
You also sound just like them in that it seemed as a "pity me" activity.

And not only have I been in your position (which seemed to be your constant disqualifier for those who disagreed with your stance) and feel that way, but it seems I have 25-plus years of life experience that you don't to support my observation.  By your formula, I could use the argument that your position is "ignorant" and you are being an "asshole", even though that's not how I actually feel.  I feel you are a teenager, angry at your situation (which is quite understandable), and transposing that anger onto others, whether they deserve it or not (and make no mistake, I do believe a few of those posters deserved it, just not all).

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Again...Disappointed.
 :thumbdown;

"We must accept finite disappointment, but never lose infinite hope." ~Martin Luther King, Jr.
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Simon Dog
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« Reply #1528 on: September 16, 2013, 01:11:31 PM »

Quote
ignorant assholes
The term for such a person is "ignoranus"
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CalamityEC
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« Reply #1529 on: September 16, 2013, 06:59:42 PM »

For reasons which I'm not completely understanding, I still haven't managed to get my appointment to get my skin graft so I can start dialysis treatment.  So, I'm "functioning" at 11%.  My boyfriend (who is a great guy) works 5 overnights a week. He doesn't get that our two forms of "I'm tired" are completely different and legit.  Or rather, he didn't get.  He's realizing as I have fewer days of feeling like myself that my complaints have more merit than his (we've only been dating a few months, though we've known each other over a decade).

I had a former co-worker inform me that kidneys aren't that important (Yes. Yes there were *facepalms* involved following that conversation).




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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
cassandra
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When all else fails run in circles, shout loudly

« Reply #1530 on: September 17, 2013, 10:35:30 AM »

     


      :banghead;


Hopeless, and you can't 'educate' everybody all the time either.

Take care,Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cdwbrooklyn
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« Reply #1531 on: September 17, 2013, 12:55:05 PM »

Calamity, you should of told her to give up both of hers and see how well she function without them.  Idiot!!!  ::)
« Last Edit: September 17, 2013, 12:56:34 PM by cdwbrooklyn » Logged

Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
Swamp Gator
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« Reply #1532 on: September 17, 2013, 02:20:12 PM »

I am dializing in cernter. Out head nurse who has had her position for almost 20 years now was harping on me abnout my weight gain for the upteenth time and about my need to restrict my fluid intake... I calmly said to her, you seem to forget that I have Gastroperisis (sp?) ... Her reply... So, you have gastroperisis, what's that have to do with anything?

If anyone should know and understand it should be her! I had to patiently explain to her what it was and how it effects my weight. Than I had to spend the next five minutes arguing with her about how much fluids to remove from me.

That has to take the prize for ignorant things I have been told by someone who should KNOW.
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A problem is just a challenge . . . Waiting to be conquered.
Impossibilities are just possibilities . . . Waiting to be made possible.
You can't stop the curve balls of life . . . But you can choose how you will handle them.
If God brings you to it . . . He will also bring you through it!

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UkrainianTracksuit
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« Reply #1533 on: September 17, 2013, 03:19:25 PM »

I was asked the following the question from a weightlifter today.  Naturally, as a whole, they are not the epitome of intelligence but I was shocked.

“If a baby or a kid donated a kidney to you, will they grow back a replacement kidney?”

 :banghead;
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NDXUFan
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« Reply #1534 on: September 17, 2013, 04:15:10 PM »

Oh Geez! Makes you want to scream.  I love it when the medical profession assumes you are diabetic because you have kidney failure.  I think I had to tell every medical professional that came into my room this last surgery that I am NOT diabetic!  One nurse even said well "most of our kidney failure patients ARE diabetics, too."     I just laugh now.  What else are you going to do?
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.

Assuming makes an ass out you and me.
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CalamityEC
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« Reply #1535 on: September 18, 2013, 05:37:25 PM »

Calamity, you should of told her to give up both of hers and see how well she function without them.  Idiot!!!  ::)

I was considering it.  But, based on really effed up things she said to the kids in our after school program made me realize it made more sense for me to offer up my brain to her... :banghead;
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
Deanne
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« Reply #1536 on: September 23, 2013, 10:59:33 AM »

I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
galvo
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« Reply #1537 on: September 23, 2013, 10:52:29 PM »

I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....

That takes the cake!
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Galvo
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« Reply #1538 on: September 26, 2013, 11:07:38 PM »

I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....

 :rofl;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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« Reply #1539 on: September 30, 2013, 09:34:03 PM »

I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....

I'm not even on the list, and people ask me that question
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
iKAZ3D
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06/08/2013

« Reply #1540 on: October 03, 2013, 05:07:56 PM »

I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....

I'm not even on the list, and people ask me that question

That's sad. Utterly.
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August 16th, 1996 - Born in Sacramento, CA; Born with Posterior Urethral Valves
September 2008 - Large Reconstruction, bladder augmented, stoma placed and ureters fixed
September 2010 - Needed emergency hip surgery for Slipped Capital Femoral Epithysis
September 2010 - Started Dialysis without refusal (Big mistake)
Summer/Fall 2011 - "Inactivated" on the Inactive Transplant List
October 2012 - Activated on the transplant list
November 30th, 2012 - Surgeons threatening to not to a transplant based on weight
April 25th, 2013 - Lost 25 pounds (97kg), however developed highly resistant bladder bacteria, Inactivated from list until eradicated
May 15th, 2013 - Finally cleared of the bacteria, reactivating on list imminent.
May 24th, 2013 - Reactivated on the list!
June 8th, 2013 - Transplant!
June 19th, 2013 - Dialysis Catheter officially removed and returned home from the hospital!
June 21st, 2016 - Sleeve Gastrectomy
March 11th, 2019 - Revision to Gastric Bypass
amanda100wilson
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« Reply #1541 on: October 04, 2013, 03:22:07 PM »

When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries.  You need it, you get it.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
iKAZ3D
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06/08/2013

« Reply #1542 on: October 04, 2013, 10:44:35 PM »

When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries.  You need it, you get it.
When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries.  You need it, you get it.

 :lol; :lol; :lol; :lol; :lol; :lol; :lol;
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August 16th, 1996 - Born in Sacramento, CA; Born with Posterior Urethral Valves
September 2008 - Large Reconstruction, bladder augmented, stoma placed and ureters fixed
September 2010 - Needed emergency hip surgery for Slipped Capital Femoral Epithysis
September 2010 - Started Dialysis without refusal (Big mistake)
Summer/Fall 2011 - "Inactivated" on the Inactive Transplant List
October 2012 - Activated on the transplant list
November 30th, 2012 - Surgeons threatening to not to a transplant based on weight
April 25th, 2013 - Lost 25 pounds (97kg), however developed highly resistant bladder bacteria, Inactivated from list until eradicated
May 15th, 2013 - Finally cleared of the bacteria, reactivating on list imminent.
May 24th, 2013 - Reactivated on the list!
June 8th, 2013 - Transplant!
June 19th, 2013 - Dialysis Catheter officially removed and returned home from the hospital!
June 21st, 2016 - Sleeve Gastrectomy
March 11th, 2019 - Revision to Gastric Bypass
CalamityEC
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« Reply #1543 on: October 11, 2013, 07:16:41 PM »

When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries.  You need it, you get it.

Or "Wait. Haven't you already had a transplant? Why do you need another one?"

I like living.  Don't you? Yeah, that's what I thought."
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
CebuShan
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« Reply #1544 on: October 14, 2013, 09:58:09 AM »

I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....

Maybe they think it's a DIY thing! Pick the donor you want to kill!
   :lol;   :rofl;   :lol;   :rofl;
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
Simon Dog
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« Reply #1545 on: October 14, 2013, 01:57:49 PM »

BEK Transplant used to sell kidneys online for $70K installed, service performed in Shanghai.
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jeannea
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« Reply #1546 on: October 14, 2013, 06:14:05 PM »

Shanghai? That donor was probably recently deceased. From some "mysterious accident."
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Simon Dog
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« Reply #1547 on: October 15, 2013, 07:32:11 AM »

Shanghai? That donor was probably recently deceased. From some "mysterious accident."

Nope.  The web site was quite open about the fact that organs came from "executed prisoners".  The website has been shut down since China cracked down on overt organ trafficking.  It looked legit - had a price list (discount for buying a liver and kidney at the same time), $5K surcharge for Type O, listed the immunosuppresents used and their source country; and had bios on the surgeons.
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Mr Pink
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« Reply #1548 on: October 16, 2013, 08:52:46 AM »

A good friend of mine who knows I have kidney failure and require dialysis asked me how my kidneys were going. Well... err... they're cactus, hence the term kidney failure and need for dialysis. She's a lovely girl, but not the sharpest tool in the shed, bless her.
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MooseMom
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« Reply #1549 on: October 16, 2013, 09:42:11 AM »

"...they're cactus."    :rofl;

Mine are prunes.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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