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Author Topic: Ignorant things people have said to you  (Read 469747 times)
kitkatz
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« Reply #1575 on: November 22, 2013, 02:51:09 PM »

See's Candy lady: "Oh I did not think they did dialysis that long!" after I told her I had been on it fifteen years.
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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
Bungarian
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« Reply #1576 on: November 23, 2013, 06:44:02 PM »

1. Some people think that because I am on dialysis that I will die in a few days.

2. People who ask "How long do you have to be on dialysis".

3. People who tell me if I eat or drink certain things I will be cured.

4. People who tell me I don't need dialysis and they are doing it to get money from me
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502Blues
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« Reply #1577 on: November 23, 2013, 07:35:43 PM »

I had a transplant in 2013. When someone asks which kidney did you get the right one or left. . .or ,now you just need one more
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1991: kidney failure, undetermined cause
1991: right and left clavicle temporary catheters
1991: catheter for PD
1992:transplant
1998: June, Fistula placement
1998: july, back to dialysis,Hemo
1999: transplanted kidney removed
2001: parathyroidism
2006:march, fstula cant be fixed due to too many stents in damaged vessels caused by temp caths
2006: april, Pd catheter placement
 PD would not drain properly
2006: finally after much pain and misery, AV Graft placed in abdomen, its working fine thank god
Quit dialysis sometime in 2009, had a change of heart and  returned before I died
transferred waiting list time to another city/state and was transplanted almost right away August 9,2013
CebuShan
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« Reply #1578 on: November 24, 2013, 06:35:56 AM »

I had a transplant in 2013. When someone asks which kidney did you get the right one or left. . .or ,now you just need one more

   :rofl;  "Now you  just need one more!"   :rofl;  That is too funny! Did you ask them if they were willing to donate?   :rofl;
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
502Blues
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« Reply #1579 on: November 24, 2013, 04:49:08 PM »

LMAO :rofl;
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1991: kidney failure, undetermined cause
1991: right and left clavicle temporary catheters
1991: catheter for PD
1992:transplant
1998: June, Fistula placement
1998: july, back to dialysis,Hemo
1999: transplanted kidney removed
2001: parathyroidism
2006:march, fstula cant be fixed due to too many stents in damaged vessels caused by temp caths
2006: april, Pd catheter placement
 PD would not drain properly
2006: finally after much pain and misery, AV Graft placed in abdomen, its working fine thank god
Quit dialysis sometime in 2009, had a change of heart and  returned before I died
transferred waiting list time to another city/state and was transplanted almost right away August 9,2013
kitkatz
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« Reply #1580 on: November 25, 2013, 09:44:30 PM »

I am getting ready to get the ileostomy put back down in January.
Kaiser calls today and tells me to come to the pharmacy and get materials to clean my colon out for a barium enema test (Fun, fun)
I told them that that was not possible because I was not hooked up to my colon anymore.
I was referred to an Xray tech on the phone, who told me she would talk to the receptionist and call me back.
No phone call as of yet and it is 9:43p.m.
I threw them for a loop.




« Last Edit: November 27, 2013, 10:03:55 AM by kitkatz » Logged



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
jbeany
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« Reply #1581 on: November 26, 2013, 09:39:19 PM »

Oh, that's priceless, Kit!  Tell them pouring Drano down the kitchen sink won't unclog the toilet.   ;D
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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.

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« Reply #1582 on: November 27, 2013, 09:41:58 AM »

While I was in for my transplant recently, I had quite a few doctors want to check my PD catheter.  When I explained that I'm on home hemo and don't have a PD catheter, they would say, "But your fistula isn't working".  They were shocked when I would say that I have a chest catheter.  "You're allowed to use that???"   

Apparently, the policy at my hospital doesn't allow home hemo patients to use a chest catheter.  Thankfully, my dialysis center is out-of-state and allowed it, as I had so much trouble with the fistula.
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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!
~~~~~~~~~~~~
Emerson Burick
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« Reply #1583 on: November 28, 2013, 04:27:47 AM »

Due to repeated leaks this year, my PD fluid kept escaping. As a result, I had to stop using my cycler at home and do tunneled-cath hemo for most of the last eight months as they'd sew me up in one place, wait for me to heal, I'd use the cycler for a week or two, and then I'd spring a leak somewhere else. Anyhow, a couple weeks ago, after leak #3, I had to re-register at my local hemo center. They made me fill out all of the paperwork all over again, and, like before, I signed the DNR (Do Not Resuscitate) form. [If you look up the stats on how well resuscitation works on hemo patients results, you'd sign it too.]

Back in June this had gone though without comment. This time, however, I got a clucking at by one tech ("You're so young! You can't sign that!"), a lecture by another ("Do you know what this means for your family? Have you talked this over with your wife?"), and the winner, some guy who I had never seen before in my months at the center, who weaseled up to me and said "Since you signed the DNR form, we need to know where to take your body if you die here. What funeral home have you made arrangements with?"

I swear to you all, my project for 2014 is to get that last son-of-a-bitch removed from his job.
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Rerun
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Going through life tied to a chair!

« Reply #1584 on: November 28, 2013, 04:53:53 AM »

Required paper work for DaVita is what funeral home they need to take you to.  They told me we can't let you sit here all day.  LOL Nice hua?
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1585 on: December 06, 2013, 06:58:04 PM »

I am getting ready to get the ileostomy put back down in January.
Kaiser calls today and tells me to come to the pharmacy and get materials to clean my colon out for a barium enema test (Fun, fun)
I told them that that was not possible because I was not hooked up to my colon anymore.
I was referred to an Xray tech on the phone, who told me she would talk to the receptionist and call me back.
No phone call as of yet and it is 9:43p.m.
I threw them for a loop.

 :waiting; Check the file? My plumbing is rerouted!
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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
kitkatz
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« Reply #1586 on: December 07, 2013, 08:43:26 PM »

Funny thing, I told them that.  They would check with each other and get back to me.  Only got back to me when I complained two weeks later.
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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
Simon Dog
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« Reply #1587 on: December 17, 2013, 10:56:34 AM »

Had an actual, real MD in the hospital tell me "I didn't know that" when I explained why potential transplant candidates such as myself wish to avoid tranfusions.

Had another MD at the same hospital tell me "I didn't know they did that" (referring to home hemo)

Had my vascular surgeon (who did great work) tell me "I don't think home hemo is a good idea, you have professionals at the clinic taking care of things"

ND:

Yes, they will take care of you with stupid lectures, high fever, and infections.  What a truly great way to live! :Kit n Stik;

You forgot to include infiltrations in that list.  Got a really nice big one at my final in-center treatment.
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G.Lively
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« Reply #1588 on: December 17, 2013, 02:31:12 PM »

I went to the doctor to ask why my stomach was distended.  After an x-ray he said I was constipated.  I took a  laxative as directed and I did produce a lot of waste product.  Abdomen still stuck out there.  Five and a half months later I was carried into a hospital in and out of consciousness and hallucinating.  The previous doctor missed three large cancerous tumors that shutdown the kidney function which resulted in renal failure and eight months of dialysis and chemotherapy for two and a half years.  During this time, my immune system was weakened and I developed chronic bronchitis and subsequently a pulmonary embolism.  Due to the pulmonary embolism and the pain that developed in my chest from coughing, Norco was prescribed.  I became addicted.  I was up to six pills per day when I decided to drop four of them, cold turkey. I just finished two weeks of the worst misery ever foisted on a human being.  I kept two pills per day to control the coughing.  All of that is behind me except the chemo.

Next month I will see an allergist about this chronic cough/bronchitis or whatever it is.  This will be my fourth doctor with whom I asked about this chest problem. They advice has been everything from a sleep clinic to surgery.   Also, next month I will have a CT scan per cancer - we hope it is in remission.

This began with a misdiagnosis.  Take my word for this: cancer and constipation are not similar; be an informed patient; make your own decisions and accept what a doctor says as advice. 

People treat you differently when they know you have a major illness; they stay away, they don't shake your hand and if they do they wipe their hand on their shirt.  Body language.  Clearly they do not understand.  The most fun I had while on dialysis was when I got a wheelchair while my wife shopped.  I ripped around those aisles and people will get out of your way.  People will be polite but they won't touch you. 
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Once upon a time I got sick.  I got cancer, cancer, cancer, and cancer.  Then I had renal failure, dialysis, chronic bronchitis, pulmonary embolism, gall bladder attack, macular degeneration, and a whole bunch of stuff.  I'll show you my scars if you show me yours.

I am not on dialysis any longer.  I am one of the lucky ones to have survived that ordeal. So I left the forum thinking only those who are on dialysis should speak out.  However, the Head-Mama invited me back. I will discuss anything you wish.  You should expect some corny jokes from me along the way.

Gerald Lively
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« Reply #1589 on: December 19, 2013, 07:31:51 AM »

Quote
This began with a misdiagnosis.
I had severe thrombocytopenia (platelets 12) diagnoses as NAFLD (noon alcoholic fatty liver disease) by a local hemotologist.   I should have listened to my wife who told me "you don't have that" when I came home with the diagnosis (she is pretty good this way - she told me I had FSGS before the biopsy was done).   Once the HGB got down to 6.5 and crit to 20, she had me transferred to a big name hospital where they told me "you don't have that" and found the real problem (niacin poisoning from a cholesterol drug).

And there is the time my wife was hospitalized with Cdiff that she picked up as the side effect for anantibiotic she was given for osteomyletis.  The problem is that she didn't have osteoymyletis in the first place - the MDs couldn't tell the difference between the dental work of a tooth extraction and bone erosion.

And there is the time when I went to an out of town clinic and the RN in charge told me there were going to enter 40 for the bicarb setting on the machnine when it was supposed to be 32 (she never go the memo about the +4/+8 issue with Naturaliyte and Granuflo).

So, be careful about trusting what the docs tell you.
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G.Lively
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« Reply #1590 on: December 20, 2013, 10:40:44 AM »

I meant to add that the diagnosis was an ignorant thing to say (in keeping  with the spirit of this thread). 

Years ago, my wife fell and crushed her elbow.  This required surgery and a stay in the hospital.  After a week, the surgeon wandered in, looked at her and said, "What are you doing here?"  It seems the Doctor forgot about her and the hospital wouldn't release her without the Doctor's order.
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Once upon a time I got sick.  I got cancer, cancer, cancer, and cancer.  Then I had renal failure, dialysis, chronic bronchitis, pulmonary embolism, gall bladder attack, macular degeneration, and a whole bunch of stuff.  I'll show you my scars if you show me yours.

I am not on dialysis any longer.  I am one of the lucky ones to have survived that ordeal. So I left the forum thinking only those who are on dialysis should speak out.  However, the Head-Mama invited me back. I will discuss anything you wish.  You should expect some corny jokes from me along the way.

Gerald Lively
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« Reply #1591 on: January 11, 2014, 11:06:51 AM »

I love my mother death, and I am so lucky that she is willing to be my donor.  She also knows that the chemo I'm going to be doing is going to make me lose every hair on my head.  At least half a dozen times in less than 48 hours she kept telling me how lucky I was to have such nice thick gorgeous hair, unlike her thin hair. 

OMG I have never wanted to scream so bad at her!
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
cdwbrooklyn
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« Reply #1592 on: January 13, 2014, 11:46:12 AM »

I was visiting my family that lives in long island NYC this weekend.  My godsister told my godmother that I was doing dialysis at home with a portal machine.  My godmother was very surprised because she thought that dialysis was when the hospital takes your blood out of your body and replace it with new blood.  I had to laugh.  I told her that I would have been dead by now because the hospital don’t have enough blood to cover me for all these years.  Things that people really don’t know.  Wow!!!  :urcrazy;


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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.
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10 years on and off dialysis

« Reply #1593 on: January 19, 2014, 06:22:07 AM »

When I was facing a return to haemodialysis for the third time (after two failed transplants) and considering my options, a friend commented (was repeated to me later)
"I don't know what she's moaning about its only a short visit to hospital once or twice a week!!!!!!!!!"

If she had said it to my face I would have knocked her out  ::)
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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« Reply #1594 on: February 12, 2014, 09:27:27 PM »

This just happened a few minutes ago. 

I'm a bit concerned with finding work on dialysis here.  I raised the concern with my friend and she said, "You don't have to work.  There are many people our age that don't work.  Such as people on drugs."  I replied, "Drugs?!"  She said, "Yeah, like heroin or cocaine."  I was STUNNED so I asked, "You are comparing dialysis with drugs?"  She said "yes."  Naturally, I went bonkers.   :rant;
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Sugarlump
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10 years on and off dialysis

« Reply #1595 on: February 13, 2014, 12:56:26 AM »

I must be doing it wrong if we are supposed to get high on dialysis!!!!!
Only thing high is my bp at times  :Kit n Stik;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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« Reply #1596 on: February 13, 2014, 01:50:45 AM »

When I was facing a return to haemodialysis for the third time (after two failed transplants) and considering my options, a friend commented (was repeated to me later)
"I don't know what she's moaning about its only a short visit to hospital once or twice a week!!!!!!!!!"

If she had said it to my face I would have knocked her out  ::)

I have what you would probably call a "slow fuse" where it takes an awful lot to set me off.  If someone had said something like this to me, it would have been like dipping that fuse in gasoline before lighting it
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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 #1597 on: February 15, 2014, 02:11:48 PM »

When I was facing a return to haemodialysis for the third time (after two failed transplants) and considering my options, a friend commented (was repeated to me later)
"I don't know what she's moaning about its only a short visit to hospital once or twice a week!!!!!!!!!"

If she had said it to my face I would have knocked her out  ::)

I have what you would probably call a "slow fuse" where it takes an awful lot to set me off.  If someone had said something like this to me, it would have been like dipping that fuse in gasoline before lighting it

I'd slap the  :birthday; out of them.
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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
Serene1
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« Reply #1598 on: February 17, 2014, 04:08:18 AM »

Oh wow we're to begin to be honest since I am 24 and obviously I hang out with people in my age group and I see them doing stupid shit like taking illicit drugs or drinking to point of black out and I just think to myself why the p*ck are they allowed to do that to themselves and yet get confused between what your kidney and livers do!!! But I digress one very ignorant thing I heard from a registrar asking me "do I like needles"while pushing in the 9th and sorry attempt of putting an IV in.  Fortunately for her my dad was with me and could tell I wanted to punch her in the face and I just calmly said "no do u." She didn't reply but I really wanted to say " obviously I don't and I don't think even heroine addicts like it which is probably better suited to your skills and least you would be able to find a vein"
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kitkatz
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« Reply #1599 on: February 17, 2014, 04:18:06 PM »

Last night I said: "I cannot eat white bread anymore upsets the tummy."
Dialysis tech: "You should not be eating it anyway, wheat bread is way better."
I said: "Whole wheat has way high phosphorous. Remember dialysis patient here."
Tech: "Oh yeah."


SIGH!
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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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