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Author Topic: That moment when you lose your usefulness  (Read 11353 times)
Poppylicious
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« on: June 07, 2012, 03:53:03 AM »

Today I'm feeling a little bewildered and the reason behind it is completely ridiculous.

Blokey is happy.  Blokey is working full-time.  Blokey is studying for a degree in Business.  There is a smallish possibility that Blokey will be getting a promotion at work.  Blokey has oodles of energy.  Blokey looks amazing (well, compared to this time last year, haha.)

And me?  Bleugh.

You'd think I'd be ecstatically happy.  And I am, honestly.  But I've spent so long being worried about everything and now - right at this particular moment in time - I have nothing to worry about.  Everything in the World of No Dialysis is going brilliantly (and I do know this won't last; nobody calls me the girl with the half-empty glass for no reason, after all!) and I feel redundant.  And a bit lost.  There's no use for me now, apart from cooking and cleaning and moaning. 

I suppose I just don't feel complete without that nagging sense of doom in my belly.

I just wondered if it's normal to feel like this?

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
lainiepop
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« Reply #1 on: June 07, 2012, 04:04:40 AM »

So glad he's doing so well ! I guess it's similar to when parents feel redundant when kids no longer need them?!

I'm at home with dad now  ;D
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
WishIKnew
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« Reply #2 on: June 07, 2012, 05:42:55 AM »

My husband and son cared for me for so long through so much.  Now we are ALL finding or new roles, redefining our purposes.  I'm getting better and better, taking on more of the home front responsibilities.  My husband is at work, not constantly getting calls about my newest health crisis, not juggling work and home and visiting me in the hospital.  It's all so new and, frankly, has us all feeling a little misplaced. 

What I'm told is it takes time to trust that you, or in your case Blokey, will be OK.  My husband signed up to fish in bass tournaments this summer, something he did for many years before ESRD hit our house.  It was a big step because it says he trusts my health enough to commit to being at 8 weekend tournaments.  I am taking an 8 week sign language class.  I was terrified to sign up and pay the money because I was sure I'd miss classes for being sick/in the hospital.  It's half over and I've been happily at every class so far.  My son has made several summer plans that take him away for weeks at a time, (boy scout camp, two weeks in Florida with his best friend) which he NEVER would have even considered last summer.  My point is we are beginning to trust my health and allow ourselves to do things we enjoy. 

When you're ready, you'll do the same.  Is there something you would like to do but never would have dreamed to try because you were too busy taking care of Blokey?  Maybe now's the time...   :beer1; 

Just a thought.

 :flower; :flower; :flower;
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jbeany
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« Reply #3 on: June 07, 2012, 07:37:31 AM »

Welcome to the new normal!  It's okay if it takes you a while to adjust.  It's not like you got used to the old one quickly, after all.
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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 #4 on: June 07, 2012, 09:11:14 AM »

I can pass some of my worry along to you ;-) I got enough to go around a dozen times or so.

But seriously what everyone said is right. Are there any hobbies you could take up to fill the time you spent worrying? Obviously I hope he takes care of your kidney for a long time but you should enjoy this break because you never know what tomorrow will bring. Take it one day at a time, and if he's doing good bask in the newfound freedom. You had enough to worry about for so long you deserve a break for you. I can't wait until Tony gets his kidney so I can go to the gym, go out with friends and not feel guilty and take a real vacation (see my blog for our recent weekend vacation disaster lol). It's time for you to focus on you! You haven't lost your usefulness, you just have a new purpose now. :)
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
willowtreewren
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« Reply #5 on: June 07, 2012, 10:47:02 AM »

Poppy, dear,

Carl sometimes says that I'm happiest when I have something to worry about.  :rofl;

So, I DO understand.  :cuddle;

Give yourself time to adjust to the new normal. It will take about a year....Carl is 16 months post TX, so I know about THAT, too.

Thinking of you.

 :guitar:

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Poppylicious
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« Reply #6 on: June 07, 2012, 01:20:21 PM »

Thanks Lovely People! 

Shortly after I wrote this Blokey had a call from Hospital (he had a post-transplant clinic yesterday) to say his creatinine is raised again (to 185 [AmeriSpeak 2.09] from his standard level of about 150).  So he has to go back in two weeks instead of four for his clinic appt. 

Fate took the bait!

I shouldn't jest about it, but hey-ho! Panic over, nagging sense of doom re-established and focus purely back on Blokey!

 ;D

(see my blog for our recent weekend vacation disaster lol).
I've linked to your blog in mine ... it won't increase your traffic but it means I might not forget to read it now!
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
boswife
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« Reply #7 on: June 07, 2012, 06:00:55 PM »

oh Poppy, you are so funny in your truthfulness..   :cuddle;   I so appreciate having this to read.  Makes me feel soooooo much more "normal"  hehe
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
smcd23
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« Reply #8 on: June 07, 2012, 08:21:04 PM »

Oh Poppy! I hope it's nothing serious this time!
Logged

Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
Poppylicious
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« Reply #9 on: June 08, 2012, 02:14:19 AM »

Oh Poppy! I hope it's nothing serious this time!
I'm hoping it's just a glitch.  He was all doom and gloom last night but I pointed out if they were that worried they'd have asked him back to clinic immediately not leave it for two weeks!  I also pointed out that they may have let him know so that if he starts to feel under the weather he can pop in to see them immediately rather than thinking it's just a sniffle.  I don't know if that's true but it made us both feel a little better about the situation.  I also said to him that he has no idea what it is on a day-to-day basis anyway ... today his creatinine could be within his 'normal' range; maybe he hadn't had enough fluid or somesuch.

I miss being a Mother Hen when all is well and dandy.  We really need to have a baby so that I can transfer my anxious feelings elsewhere and let Blokey enjoy being better in peace!

oh Poppy, you are so funny in your truthfulness..   :cuddle;   I so appreciate having this to read.  Makes me feel soooooo much more "normal"  hehe
Thank you duckie!  I hate to be a cliche but it is sometimes true that if you don't laugh you'll cry. 

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
drgirlfriend
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« Reply #10 on: June 09, 2012, 07:23:36 PM »

Hang in there Poppy! I also love your posts, but if someday they stop because Blokey is fully mended, I will be so very happy for you! I just know that I'll have the same problems when the boyfriend gets a kidney.

I wonder if it's like what they say about establishing a new habit - that you have to do a new behavior for 2 months before it sticks. Wade slowly into a potential hobby. Dip your toe in and see how long you can hold it there. Over time you'll feel normal in your new interests and activities I'm sure.   :cuddle;
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
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Started Liberty Cycler 12/1/11.
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« Reply #11 on: June 10, 2012, 01:29:23 PM »

Hang in there Poppy! I also love your posts, but if someday they stop because Blokey is fully mended, I will be so very happy for you! I just know that I'll have the same problems when the boyfriend gets a kidney.

I wonder if it's like what they say about establishing a new habit - that you have to do a new behavior for 2 months before it sticks. Wade slowly into a potential hobby. Dip your toe in and see how long you can hold it there. Over time you'll feel normal in your new interests and activities I'm sure.   :cuddle;
Awww, thank you!  However, I don't think I'll be going anywhere even when things are tickety-boo and swimming along nicely! I dread to think what sort of person/wife I would be if I hadn't mistakenly stumbled upon this site just after Blokey started haemoD and I owe everyone here so much, not just for keeping me sane but for all the advice and everything.  I'd like to think that I can do the same for others.  Plus, I think we'll always run into glitches of some sort (and one day I have no doubt they will be Big Glitches, but hopefully not for a good few years) so I don't want to stop posting here for that reason too.

I hope you and bf are getting on okay and things are settling down in your new place.

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
billybags
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« Reply #12 on: July 25, 2012, 12:12:13 PM »

Poppy, what are you like! You are the same as me, you worry to much and yes I bet you do feel redundant. You don't have to worry about meds, eating, every thing pertaining to dialysis. Its your turn to take it easy girl, enjoy. Think of all the times you were so stressed, you do not want those days back. Blokey is getting on with his new lease of life and I bet you feel like he doesn't need you any more. You have got to find things for your self to do,  some thing you enjoy. Read the 50 Shades of Grey books, that will keep you occupied for all of 3 days. Hope his hospital appt. goes OK .Bless you.
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Desert Dancer
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« Reply #13 on: July 25, 2012, 05:18:21 PM »

Fate took the bait!
I shouldn't jest about it, but hey-ho! Panic over, nagging sense of doom re-established and focus purely back on Blokey!

Oh, lordy. Andy and I both laughed out loud at this part.  :rofl; :rofl;

You've got nothing on Andy in the 'glass half full' department. I'm convinced he's not happy unless he has something to worry about; it's one of the few big things we're opposites on. When I read him your first post he said:

"If she needs something to worry about, just tell her the sun is going to supernova".

You can see what I mean.

Glad you're back in your groove... well, sorta, I mean obviously I hope it was just an error on the part of the lab. As you said, isn't creatinine one of those that is very dependent on your state of hydration? I'm sure Blokey will be fine.  :grouphug;
« Last Edit: July 25, 2012, 05:20:23 PM by Desert Dancer » Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
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« Reply #14 on: July 25, 2012, 06:31:31 PM »

I hope Blokey's labs are ok and you can go back to worrying about no worries!  ;D
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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
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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
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« Reply #15 on: July 26, 2012, 04:12:06 AM »

*chuckles* ... it's about six weeks since I last posted in this thread.  Blokey is fine. 

At his last Hospital appointment the neph (not the sexy one) offered him a two month break because his labs were so good (I say good, I think they're just resigned to the fact that his creatinine will always be above normal and hover around the 150 mark).  He respectfully declined the offer and asked for an appointment in just a month. We're halfway through that month now.  It is a tad scary ... four weeks is the longest he'll have gone between appointments and it is really hot this week in England so I've been able to nag him about keeping Our Kidney functioning.  I picked up his meds today too ... gave me something to do (I'm on my summer hols from work, till September and I have no money *sigh*)

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
lainiepop
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« Reply #16 on: July 26, 2012, 08:46:19 AM »

That's good news Poppy! How many Mths post tx is he now? I can't wait til i only have weekly bloods not twice weekly Should be soon, but then ill worry lol! I have to have Something to Worry bout lol! x
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Poppylicious
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« Reply #17 on: July 26, 2012, 09:08:33 AM »

That's good news Poppy! How many Mths post tx is he now? I can't wait til i only have weekly bloods not twice weekly Should be soon, but then ill worry lol! I have to have Something to Worry bout lol! x
Are you still twice weekly?  Blimey.  They're taking good care of you!  We've reached 282 days of No Dialysis!!!, which is the same as just over nine months.

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
lainiepop
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« Reply #18 on: July 26, 2012, 09:53:59 AM »

Yes I'm 8 wks post tx they said they do it once w kly from 12 Wks but will see maybe Sooner if crcatnine & tacro Stable which has been last 2 wks! Its ok at mo as steves off for Summer will be a pain Sep cause Andrew starts school but only Morns for 6wks so my appointments maybe when i have to pick him up & Elena will scream Whn i have bloods done cause she hates being in pushchair lol! fun times ha ha! But so worth it i've noticed ii not tired & getting annoyed with Steve i'm up & about at 7 & he's tired, how?! lol! too much energy :) XX
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
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« Reply #19 on: July 26, 2012, 12:41:28 PM »

*chuckles* ... it's about six weeks since I last posted in this thread.  Blokey is fine. 

Well, color me embarrassed.   ::) That'll teach me to look at the dates.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
Poppylicious
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« Reply #20 on: July 27, 2012, 03:31:44 AM »



Well, color me embarrassed.   ::) That'll teach me to look at the dates.
[/quote]
Awww, I'm glad I made you and Andy laugh though!

Lainiepops, I love the fact that you have so much energy now ... I expect Steve is wishing you'd had the transplant a bit later in the summer so that he could enjoy longer lie-ins whilst on his holidays! 

 :P
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
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Everything was beautiful, and nothing hurt.
Poppylicious
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« Reply #21 on: August 09, 2012, 08:58:14 AM »

Blokey had his post-transplant clinic appointment yesterday and I've been waiting all day for that nasty phone call which says his creatinine is up again and he must come in, IMMEDIATELY.

The phone call hasn't happened (they've got about thirty-five mins till the end of office play though) so I think I can safely say ... YAY! Blokey doesn't have to go back to transplant clinic again till the beginning of October! 

Let's see how tempted Fate is by that ...

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
lainiepop
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« Reply #22 on: August 09, 2012, 09:57:57 AM »

Yay!! So you Can relax & enjoy the clinic time off (or are you like me Wonder it theyve given the right results lol !)

I'm down to once a wk bloods now i have it taken day before So results are there when i see them otherwise i freak when phone rings! A couple Wks ago  they worried as i had a nasty cough & Slight temp (prob down to hot weather) so she Said she'd call me later with results, luckily all was fine but i was imagining allsorts. Hopefully letting go & not worrying So much Will come as clinic apps get further apart, is thiS true?!

Anyway glad all is well are you enjoying the Sun? x
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Poppylicious
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« Reply #23 on: August 10, 2012, 05:58:51 AM »

Hopefully letting go & not worrying So much Will come as clinic apps get further apart, is thiS true?!

Anyway glad all is well are you enjoying the Sun? x

Hmmm, I'm not sure.  I think (for me) that the further apart the appts are the better because I can put them to the back of my mind, but it does mean that when something doesn't look quite right with Blokey I'm more likely to panic because I know it's going to be ages before he's scheduled to see the neph again!  Clinic day and the immediate day after are always going to worry me!

The sun is lovely, but it's too hot to mow my grass!

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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« Reply #24 on: August 10, 2012, 10:38:04 AM »

My hospital makes you show up at the crack of dawn for blood work, with an afternoon appointment when they have all the results.  I was grumbling about having to get up so stinkin' early to get the blood work done, but I've just changed my mind.  I think I'd rather have the results the same day rather than wait until the next one to know if there's a problem!
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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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