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Des
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« on: March 16, 2013, 09:02:15 AM »

Hi, It has been a long time since I've been here. I have now for the first time in a very long time been "content" again. It all has to do with TIME, yes time. I now have time to do stuff. My life has been so super busy with every minute of every day booked up and I never had enough time. But since I have been put on disability in Nov"12 I am alive again. Before that it was just work work work and then going for the D treatment and then work and then sleep and then going back to work. Now after being on treatment for 3 years I have time to do the most trivial little things that bring joy! I planted strawberries. I learned how to knit and crouché. I made a blanket! I cook everyday! I sleep when I feel tired! I spend my evenings snuggled up next to hubby on the couch instead of on a machine!  I go to church meetings and belong to a committee. I sowed some seeds that will turn this garden into a carpet of flowers in the winter. I cant wait! I feel like one of those seeds that have been in the dark and now I have grown and are flowering!   :flower; :flower; :flower;
"D" doesn't seem that bad anymore. And for those on here that knows me they will remember how hateful I was about this disease...

Just want to say that I hope you all have enough time for all those little things you love to do and not just the things you have to do. And if you don't have enough time MAKE TIME!
 

   
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
MooseMom
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« Reply #1 on: March 16, 2013, 09:05:57 AM »

Oh Des, it is WONDERFUL to hear from you again!  And you are so right...we get so caught up in the detritus of life that we don't have the time to take pleasure in the simple things.

I have a strawberry patch, too, which somehow always survives the hard Chicago winters.  It seems that a lot of my berries go to the bunnies, but that's ok since they have to eat, too.  There's plenty left over for me.

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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."
Rerun
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Going through life tied to a chair!

« Reply #2 on: March 16, 2013, 09:49:25 AM »

Des,

I know when I finally dove into the ocean of disability retirement, I had time to relax and eat right (but I still cheat) time to read, time for church, I even have up to 14 women at my home every Wednesday evening for dinner and fellowship.  It is a joy that I take now because I may not be around in my 60's to do this.  (I'm 51).  Plus, having company every week makes me have time to vacuum, dust etc...

I hope you have some time left over for IHD.   :cheer:

I hung onto my job for as long as I could, and I miss the money and the work.  I would go back in a minute if I didn't have dialysis too.  But, I can't do both.
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Riki
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« Reply #3 on: March 16, 2013, 01:04:27 PM »

it was a relief for me to say goodbye to my job.  It wasn't that I didn't like it, I just didn't have the energy for it anymore.  I think it's funny, when people ask my mom what I do for a living, she tells them I'm retired.  I'll be 35 in May. *G*
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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
Des
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« Reply #4 on: March 26, 2013, 06:12:23 AM »

Yep, it has been a hectic week (last week). I had an ovarian cyst burst - OUCH. Been in hospital for a short visit. I hated every minute of it . The food was dreadfull and I spent the rest of the week recovering at home with a heck of a headache!. This week has bee wonderfull. Just bought new sheer curtains for the lounch - very pretty. Baked some rusks and it is only Tuesday.  :yahoo; :yahoo;   
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Speedy1wrc
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« Reply #5 on: March 26, 2013, 06:25:38 AM »

I wish I felt the same. I "should" have a ton of time, but it always seems like I am swamped.

I do Home Hemo so i am on 5 days a week. By the time I set up, get treatment and then clean up/finish up, the day is half done. Then on my day off(Tuesday) I have Dr's appointments scheduled out for weeks.

I need those 48 hour day's.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #6 on: September 10, 2013, 01:54:39 AM »

Just reading this and so thrilled to say that Des got a kidney!
Surgery was just a couple of days ago.
So happy for her!  :yahoo;
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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
MooseMom
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« Reply #7 on: September 10, 2013, 08:51:52 AM »

Oh, this is absolutely fantastic news for Des!  I will never forget how thoroughly miserable she was when she first started dialysis and her first donor didn't work out.  I'm so happy for her.
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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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