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Author Topic: Have you ever felt like this?  (Read 8047 times)
Riki
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« Reply #25 on: December 20, 2011, 06:54:39 AM »

I make a lot of snide remarks on facebook about my family.  I'm past caring if it bothers them or not, since they've pretty much turned their backs on me healthwise.  One of my dad's sisters told my mom that she thought I was just lazy, and using dialysis as an excuse.  Then her husband was diagnosed with stomach cancer, and she saw what illness does to a person.  Her tune changed pretty quickly
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transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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HD - Dec 2008-present
shorty590000
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« Reply #26 on: December 20, 2011, 01:31:09 PM »

Jadey, yes, yes, I can relate... I still tell myself its just me being lazy... but then found out 2 weeks ago hemoglobin was down to 8 and highly anemic.. so now I have an explanation as to why I drag my tail all the time!!!! LOL
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Michelle
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« Reply #27 on: December 20, 2011, 01:37:39 PM »

And the thing I get from people, including my family is that they think I am well and not sick anymore because I am temporarily off dialysis.. with kidney function of 18-20%...for the most part, I feel good... anemia is kicking my butt right now though... but people just do not realize just how many issues are going on despite the fact that I look well...
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Michelle
jadey
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« Reply #28 on: December 20, 2011, 09:10:18 PM »

I make a lot of snide remarks on facebook about my family.  I'm past caring if it bothers them or not, since they've pretty much turned their backs on me healthwise.  One of my dad's sisters told my mom that she thought I was just lazy, and using dialysis as an excuse.  Then her husband was diagnosed with stomach cancer, and she saw what illness does to a person.  Her tune changed pretty quickly

I liked how you addressed her as your dad's sister, and not aunt  :rofl; I wouldn't call someone so ignorant and insensitive my family either.
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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
Riki
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« Reply #29 on: December 21, 2011, 04:59:43 PM »

I make a lot of snide remarks on facebook about my family.  I'm past caring if it bothers them or not, since they've pretty much turned their backs on me healthwise.  One of my dad's sisters told my mom that she thought I was just lazy, and using dialysis as an excuse.  Then her husband was diagnosed with stomach cancer, and she saw what illness does to a person.  Her tune changed pretty quickly

I liked how you addressed her as your dad's sister, and not aunt  :rofl; I wouldn't call someone so ignorant and insensitive my family either.

I don't know her that well.  My parents wouldn't let us have much contact with her and her husband until we were older, because of her husband's sexual preference
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HD - Dec 2008-present
bleija
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« Reply #30 on: December 21, 2011, 06:12:08 PM »

sexual preference?  ??? ???
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Riki
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« Reply #31 on: December 21, 2011, 06:32:36 PM »

Yeah.. he has a preference for little girls
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bleija
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« Reply #32 on: December 22, 2011, 05:57:54 AM »

thats what i thought but ddnt want to think like that, oh well, my bro in law has the same prefference...
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Traveller1947
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« Reply #33 on: December 22, 2011, 07:09:59 AM »

jadey: never complain, always explain.
fearless: as usual, you've summed things up beautifully.
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Make me the person my dog thinks I am

« Reply #34 on: December 22, 2011, 07:15:59 AM »

If you read my intro you will see that D happened very quickly for me.  I didn't say anything to anyone other than my family for some time.  I didn't want the to pity me and feel people will look at me differently.  But riding with biker Buddy's, I had to do D in the middle of a ride.  At first I was shy and tried to hid it.  But it is very hard to hid a 2.5 liter bag of liquid hanging off the handbars as well as the drain bag on the ground.  All the biker Buddy's would look at the set up, some ask questions, but none have said anything negative about it.  Besides, my exchange gives them more time to enjoy that last beer. 
For work, most everyone knows about it and my bosses understand.  Some folks are bit queasy about discussing it, but others are interested in all the details.  So I'm trying to educate those that are interested and not bug those that are not.
My biggest issues come if I dehydrate too much and become light headed.  Then most folks will make me sit down and make me start drinking water.  I have a bunch of good folks around me - both at work and at play.
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Make me the person my dog thinks I am
Riki
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« Reply #35 on: December 22, 2011, 11:33:03 AM »

My exboyfriend was just like that, Grumpy.  He was fascinated with the whole dialysis thing.  He'd watch me doing the exchanges, but he refused to touch any of it.  I'd explain it to him as much as I could, because I'm sure there was some he just didn't get.  He was a good sport through the whole thing
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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fearless
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« Reply #36 on: December 22, 2011, 09:21:14 PM »

Traveller1947,
Thank you!  That's very nice of you to say.
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amanda100wilson
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« Reply #37 on: January 06, 2012, 05:45:44 PM »

Parked in the disabled spot in Home Depot a few years ago and came back to a not on the car saying'you aren't disabled.  I've taken a photo of you and your car and am going to report you to the police'.  Neverheard anything from the police ofcourse,but the assumption is that if you aren't in a wherlchair, aren't morbidly obese or a senior, you can't be disabled.  At the time i was on dialysis and selling our house on my own whilst my husband was already working several States away.

My brother, who like the rest of my family still live in the UK, lost his leg in a motorbike accident.  He walks very well on his prosthetic leg but no surprisingly has a disabled parking badge.  Some man came up to him and told hinm that he shouldn't be parking there.  I bet that guy was embarassed when my brother raised the leg of his pants to reveal the prosthesis.
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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...
jadey
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« Reply #38 on: January 06, 2012, 05:53:36 PM »

Parked in the disabled spot in Home Depot a few years ago and came back to a not on the car saying'you aren't disabled.  I've taken a photo of you and your car and am going to report you to the police'.  Neverheard anything from the police ofcourse,but the assumption is that if you aren't in a wherlchair, aren't morbidly obese or a senior, you can't be disabled.  At the time i was on dialysis and selling our house on my own whilst my husband was already working several States away.

My brother, who like the rest of my family still live in the UK, lost his leg in a motorbike accident.  He walks very well on his prosthetic leg but no surprisingly has a disabled parking badge.  Some man came up to him and told hinm that he shouldn't be parking there.  I bet that guy was embarassed when my brother raised the leg of his pants to reveal the prosthesis.

While I think that people who judge others like that are really annoying...I gotta give them props for trying to be the "hero", although failing miserably. That is because there really are many lazy healthy people out there that park in the handi-cap zones.

Where I live, people need to get a disability permit and hang it on the rearview mirror in order to park these spots. But even then, the system still gets abused because some people get permits because of a certain family member..but they use it even when they are not driving that person around.
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Nov 5, 2011 - diagnosed with ESRD, unknown cause
Nov 14, 2011 - PD catheter insert
Nov 15, 2011 - Started PD
Oct 11, 2012 - received a kidney from my mom, 3/6 match
-kidney wasn't filtering properly. 2nd surgery 4 days later to re-position kidney. Accident happened and kidney got damaged. Internally bleed 1.5 L and needed a transfusion. 3rd surgery to sew up the damaged kidney.
-anaphylactic shock to thymoglobulin
-ATN and rejection
-sleepy kidney waiting to recover

a start of a new life, a new journey
Riki
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Posts: 3408


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« Reply #39 on: January 06, 2012, 06:41:47 PM »

We have a placard for the rear view mirror.  My doctors had no problems signing off on it. When we first started using it, I was in my late teens/early 20s, and we used to get a lot of strange looks, because if you didn't know there was anything wrong with me, you'd never be able to tell.

Now that my eye sight has decreased to the point that it has, that placard is a Godsend.  It's definitely a safety issue, getting through parking lots and into the store.  The placard says that the person using it needs to have problems walking 75 feet or less.  I got in an argument once, with someone on another board, who said that a lot of people who used them were abusing the system, because they couldn't walk the 75 feet to the store, but could walk around the store for an hour.  I had a hard time convincing the guy that once you were in the store, the risk of getting hit by a car is much less, and the risk of injury goes down exponentially.
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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
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