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Author Topic: Ignorant things people have said to you  (Read 469736 times)
Chris
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« Reply #650 on: March 06, 2009, 05:13:19 PM »

I would say text me ASAP to get an answer ;D :rofl;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
kitkatz
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« Reply #651 on: March 06, 2009, 05:15:31 PM »

I do not text, shall I just send smoke signals?
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Chris
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« Reply #652 on: March 06, 2009, 05:17:08 PM »

Sure, but I'll just think California is on fire again.  :sarcasm;
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
kitkatz
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« Reply #653 on: March 06, 2009, 05:18:43 PM »

 :sarcasm;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #654 on: March 07, 2009, 09:46:02 AM »

Sure, but I'll just think California is on fire again.  :sarcasm;

 :rofl; :rofl; :rofl;
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
RightSide
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« Reply #655 on: March 15, 2009, 03:13:35 PM »

Evidently a lot of people think that all kidney failure is caused by diabetes.

So when I tell someone I have kidney failure, it's always the same routine:

Q:  Do you have diabetes?
A:  No.
Q:  Do you have high blood pressure?
A:  No.
Q:  Do you have heart disease?
A:  No.
Q:  Then how did you get kidney failure?
A:  Urinary retention from BPH.

I've been doing that routine so many times, I'm sick of it.

I had met with the Peritoneal Nurse at my center to discuss switching to PD.  And she started in with the same routine.  This time I couldn't take it any more so I replied:

Q:  ....Then how did you get kidney failure?
A:  The Lord smote me with His Mighty Hand.
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dwcrawford
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Getting the heck out of town.

« Reply #656 on: March 15, 2009, 03:52:53 PM »

I have read these threads almost constantly the past couple of weeks.  As a new dialysis candidate I'm sure I would have made many of the ignorant comments.  I wonder if it should be labeled as "things well meaning but uneducated people have said" (for the most part I mean as some were out and out ignorant.

Since November when I found out I needed to start dialysis soon, I have questioned why the lack of general information.  I mean all of the different treatments, causes, acronyms and types of dialysis can make your head swim.  I mean more awareness would general more knowledge which would generate more money which would generate more education which would generate more research which would generate less stupid (annoying) questions.  Omg, I gotta think about something else don't I?
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
kitkatz
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« Reply #657 on: March 15, 2009, 07:20:56 PM »

Evidently a lot of people think that all kidney failure is caused by diabetes.

So when I tell someone I have kidney failure, it's always the same routine:

Q:  Do you have diabetes?
A:  No.
Q:  Do you have high blood pressure?
A:  No.
Q:  Do you have heart disease?
A:  No.
Q:  Then how did you get kidney failure?
A:  Urinary retention from BPH.

I've been doing that routine so many times, I'm sick of it.

I had met with the Peritoneal Nurse at my center to discuss switching to PD.  And she started in with the same routine.  This time I couldn't take it any more so I replied:

Q:  ....Then how did you get kidney failure?
A:  The Lord smote me with His Mighty Hand.




Yeay verily!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
G-Ma
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« Reply #658 on: March 16, 2009, 07:35:15 PM »

 :bow;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Beth35
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« Reply #659 on: March 21, 2009, 12:26:16 PM »

I hate when people look at me and say, "Oh, I could never handle dialysis.  I just couldn't do that."  I'm thinking... um....yeah, ya could.  If you wanted to LIVE!  Do people really think we do it just for fun?!

My other issue, when I was dialysis, is that wherever I went with my Grandmother, she would introduce me as the "one on dialysis" as if it was some pity party.  Then everyone would say how horrible it is and blah, blah, blah.  I kinda feel like my Grandmother enjoyed getting that attention from people.  I hated it!

Oh and I just LOVE hearing conversations people have about not wanting to give their organs when they die because they think they won't get into Heaven without them.  These type of comments usually take place where people don't know me.  This happened in an English class once and the professor brought the topic up.  I didn't hear from one person in the room who wanted to give their organs when they die.  But if THEY needed one to live they would be there with their hands out.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
jbeany
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« Reply #660 on: March 22, 2009, 07:14:52 AM »

I don't get that logic at all - do they think God's going to look at them at the Pearly Gates and say "Nope, sorry, you saved someone's life with an organ donation - you can't come in here!"?
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Beth35
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« Reply #661 on: March 22, 2009, 07:21:13 AM »

Apparently so jbeany.  Crazy huh?  Of course I was too shy to "out myself" and tell everyone what I was going through and how I felt about their ignorance. I look back on that day and I get so mad at myself for not speaking up.  But I was young and scared.  Now, watch OUT!  I don't hold back.  LOL!
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
TynyWonder
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Calvin

« Reply #662 on: March 22, 2009, 04:23:09 PM »

Oh and I just LOVE hearing conversations people have about not wanting to give their organs when they die because they think they won't get into Heaven without them.  These type of comments usually take place where people don't know me.  This happened in an English class once and the professor brought the topic up.  I didn't hear from one person in the room who wanted to give their organs when they die.

I think that is the stupidest thing I have ever heard!!!    :urcrazy;
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008

You can easily judge the character of others by how they treat those who they think can do nothing for them.    I BELIEVE THIS TO BE SOOOOO TRUE!
Beth35
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« Reply #663 on: March 22, 2009, 04:36:25 PM »

Tell me about it TynyWonder.  That is exactly what I thought.  And this coming from my favorite professor and my college peers.   :urcrazy;
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
JasonEb
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« Reply #664 on: March 24, 2009, 02:05:23 AM »

I have read these threads almost constantly the past couple of weeks.  As a new dialysis candidate I'm sure I would have made many of the ignorant comments.  I wonder if it should be labeled as "things well meaning but uneducated people have said" (for the most part I mean as some were out and out ignorant.

Since November when I found out I needed to start dialysis soon, I have questioned why the lack of general information.  I mean all of the different treatments, causes, acronyms and types of dialysis can make your head swim.  I mean more awareness would general more knowledge which would generate more money which would generate more education which would generate more research which would generate less stupid (annoying) questions.  Omg, I gotta think about something else don't I?

It's simple...it boils down to money.  Dialysis is a gold mine for the medical community.  It's more lucrative to keep us barely holding on at the whim of their machines and their medications than to come up with a cure.
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Zach
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"Still crazy after all these years."

« Reply #665 on: March 24, 2009, 06:20:33 AM »


I wonder if it should be labeled as "things well meaning but uneducated people have said" (for the most part I mean as some were out and out ignorant.


Excellent point!
Many of us were uneducated about CKD before it affected us.

8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
paris
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« Reply #666 on: March 24, 2009, 07:42:50 AM »

I was one of those!  I knew the basics but there was so much more!  Thank God for IHD!  So, we need to keep spreading the knowledge.   :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Jess21
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« Reply #667 on: March 24, 2009, 11:24:48 AM »

I said the other day I didn't feel good.  My boyfriend's response? "You never feel good...you DO have kidney failure!"
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Beth35
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« Reply #668 on: March 24, 2009, 12:26:49 PM »

I think the problem in my situation is that people KNEW I had kidney disease.  They knew that I was on dialysis and I did tell them why I was so tired.  I just think they never really believed it.  Like they knew it took a lot out of me but that they didn't really think I'd be THAT tired.  I honestly don't think there is much more I could have said to some people to get them to understand.  I think some people (like my Aunt) would need to actually go through it to get it.

No one REALLY understands how tired you are.
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
twirl
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« Reply #669 on: March 24, 2009, 04:34:37 PM »

no one will ever understand how tired I am

"How can you be tired?"    "You just got out of dialysis."
« Last Edit: March 24, 2009, 04:40:51 PM by twirl » Logged
Beth35
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« Reply #670 on: March 24, 2009, 04:45:55 PM »


Quote
"How can you be tired?"    "You just got out of dialysis."

Yeah, right?
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Found out I had kidney disease when I was 15.
Started dialysis when I was 20.
Got a kidney transplant when I was 25.
Kidney failed at 37 and I began my second journey on dialysis.
kitkatz
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« Reply #671 on: March 24, 2009, 06:23:33 PM »

no one will ever understand how tired I am

"How can you be tired?"    "You just got out of dialysis."



Oh my Gawd!  They just do NOT get it do they?
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #672 on: March 24, 2009, 09:40:54 PM »


Ignorance is bliss.
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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
dwcrawford
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Getting the heck out of town.

« Reply #673 on: March 25, 2009, 01:12:23 AM »

This is serious and probably "blissful" but one of my doctors and the nurses from the class said that'd I would feel really good after dialysis.  I really thought that was true.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
RichardMEL
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« Reply #674 on: March 25, 2009, 01:17:18 AM »

This is serious and probably "blissful" but one of my doctors and the nurses from the class said that'd I would feel really good after dialysis.  I really thought that was true.
yeah this is the difference between those that understand what its meant to do, and those that experience it.

"really good" is relative I suppose. I mean consider the alternative.

Sometimes I finish dialysis and I go home and curl up for a few hours and have a cat nap. Other times I am fine - I have gone to the footy and screamed and yelled and generally carried on!

The thing is you don't come out feeling refreshed like an energizer bunny or something. At least I haven't. You are living absolutely, and you obviously would feel better than if you DIDN'T have dialysis (because you'd be much more sick with all the toxins!) but really.. to say you'd feel "really good" is a bit unfair because it could set up unrealistic expectations in some people. Some might hear that and think they'll be bouncing off the walls or something after it.

Actually most of the time I'm so happy to be out of that chair and able to move my arm that yeah, I do actually feel really good!! Hey, they were right all along!!!  :rofl; :yahoo;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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