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cariad
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What's past is prologue

« Reply #150 on: November 26, 2011, 01:41:05 PM »

I missed the video  :(

Huh! Not sure why they took it down, because it is still up on YouTube. Hopefully they have not been spammed or anything.
Try this: http://www.youtube.com/watch?v=CniDCT-52gM

It's short and sort of has a little story to it, but if you just want to go straight to my superstar child, watch from about 2:30 to 3:00

Hope this works! :)
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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cariad
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What's past is prologue

« Reply #151 on: November 26, 2011, 01:56:41 PM »

:bandance;
If there is anything I can do for you guys on this end that would help please do not hesitate to ask. Really, I would be more than happy to do anything that might help out.  What city will Gwyn be working in?

Thanks so much, Marc. I will send you a PM with Gwyn's work details. I don't know if you know the LA area, but we would be very grateful for advice on which neighborhoods are reasonably safe with good primary schools. If you happen to know anyone who wants to lease their home and can be flexible on lease terms (six months) we have good credit and always somehow manage to pay, and on time. We have been looking through the Craigslist ads, but that gets overwhelming pretty fast.

Thanks for the offer! I'll be in touch....
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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« Reply #152 on: November 26, 2011, 03:59:39 PM »

I know the LA area well, and also know a couple realtors who may have rentals. Please let me know how I can help.
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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
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« Reply #153 on: November 27, 2011, 10:41:03 AM »

I have friends and family go the LA area. I'll see what I can find out also.
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cariad
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What's past is prologue

« Reply #154 on: December 04, 2011, 03:10:18 PM »

He's gone. :(
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us and fam easter 2013

« Reply #155 on: December 04, 2011, 03:30:19 PM »

 :(  I hope this time goes comfortably for you..  it's gonna be tough  :(    :grouphug; :grouphug;
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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
MooseMom
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« Reply #156 on: December 04, 2011, 03:31:19 PM »

Oh gosh... :cuddle;

I wish I knew what to say to make you feel better.  What exactly is going to happen next?  Do you know?  When will you see him again?  Will you go there or will he come to you and the boys?
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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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« Reply #157 on: December 04, 2011, 04:10:53 PM »

You are strong, Cariad! The days will pass quickly.  :cuddle;

When Carl and I were first married, lo those many years ago, he was shipped overseas just two weeks after the wedding. And then he was gone for 6 months. No phone calls, even, only letters that sometimes took weeks to arrive since he was on a ship.

That separation only made us determined to celebrate the time we have together even more. After 42+ years we still celebrate every MONTH!

Maybe you can find a new tradition in your family that will make the time apart go faster.  :grouphug;

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. :)
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« Reply #158 on: December 04, 2011, 11:11:11 PM »

Oh, cariad.  :cuddle;

I don't know what I'd do if Andy and I had to be separated for any length of time. Here's hoping you're reunited sooner rather than later.
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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.
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« Reply #159 on: December 05, 2011, 02:59:13 AM »

Damn and blast it.  Too many nonsense-sandwiches for your family at present.  But Aleta has a point, I too think you have it in you.  My mum was a navy wife (dad was in submarines), and she used to say the time went alright, and sometimes it was good to have him out of her hair for awhile.  She had her first baby while dad was at sea;  they were stationed in Scotland, and my brother was born in Helensborough.  I'll have a talk to her (on the astral) and get her to send some forbearance your way dear Cariad.  I'm pretty sure she'll be able to work something out for you.
 :boxing;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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Might as well smile

« Reply #160 on: December 05, 2011, 04:46:41 AM »

Thinking of you both.   :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
cariad
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What's past is prologue

« Reply #161 on: December 06, 2011, 03:30:20 PM »

Thank you everyone. I am handling it OK I guess, sort of feel deadened to the whole thing. The three of them were in tears on Sunday, even little Liot who is not a child who shows emotion much. I did not cry because I just felt like I couldn't.

Aidan seems like he's getting on with it, but Liot keeps telling me he wants his dad. This was the opposite of what I was expecting. My parents are in town and that causes much grief. I just had lunch with them. I am battling with them (as usual) over their annoying-beyond-belief avoidance behaviours. My parents have really only 4 different reactions to any conversation that they don't want to deal with: lie, say they cannot remember, criticize the person speaking, change the subject. So today I was talking about how horribly stress impacts health, and that being loaded up on prednisone as a kid was such a bad decision on the part of these so-called medical experts. My father immediately said "what do the kids want for Christmas" and I looked him straight in the eye, nonchalantly stated "Their dad." and went right on talking about stress and health and my life experiences. Made me feel better as it took him several minutes to recover from that answer and try a new strategy to derail the conversation. :rofl;

Damn and blast it.  Too many nonsense-sandwiches for your family at present.  But Aleta has a point, I too think you have it in you.  My mum was a navy wife (dad was in submarines), and she used to say the time went alright, and sometimes it was good to have him out of her hair for awhile.  She had her first baby while dad was at sea;  they were stationed in Scotland, and my brother was born in Helensborough.  I'll have a talk to her (on the astral) and get her to send some forbearance your way dear Cariad.  I'm pretty sure she'll be able to work something out for you.
 :boxing;

I love the term 'nonsense-sandwiches' and got quite a laugh reading that. Thank you so much, Nat. Tell your mum that I already feel calmer just hearing about her strength. She must have already fulfilled your request....  :) (Having a baby without your dad there? Wow. That puts my 'fear of having to shovel snow by myself' into perspective! :rofl;)

I don't know how I'd get by without knowing that I have you all to listen to me. Thanks. :grouphug;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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chook
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« Reply #162 on: December 06, 2011, 05:11:04 PM »

 :cuddle; from me. Hoping that being on your own lets you find hidden strengths.
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cariad
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What's past is prologue

« Reply #163 on: December 07, 2011, 09:23:45 AM »

Thank you, chook! Hugs are so appreciated.

I actually had a nice dinner with my parents and children last night. Yes, this proves it - anything is possible.

We went to the more casual sister location of Milwaukee's top restaurant. Our waitress was really nice and extremely professional which helps because my kids don't always have the strongest social skills. At one point she was taking Liot's plate away and he said "You tried to kill me right now." OH MY GOD, WHAT ARE YOU SAYING, LITTLE BOY??!!! My mother sussed it first, saying that he was referring to how the boys and I joking in the car on the way over that another restaurant tried to kill us the night of my husband's birthday with gianormous portions of everything. (The waiter was clearly talking to the chef and telling him to pile on the extras, their portions usually are not so insane.) I explained the reference to the waitress and Liot said "I thought she would know what joke I was talking about." I responded "She wasn't in the car with us, was she?" The waitress then said "Well, we're all in the same conversation now." She then added as an aside that she has a ten-year-old nephew and understands when somewhat bizarre statements pour out of kids' mouths.

Spoke to Gwyn after dinner. It seems that many people at this company are not sure whether this job will actually last, and are doing what he is doing - trying it out for six months and then determining if there is any future there. So, I am very glad that we have made the decision to do things this way and not pull the kids out of school. The director of engineering at the Welsh company that I mentioned quite some time ago wants to discuss job possibilities with Gwyn. He has a phone interview scheduled with him next week. They understand that he is committed to where he is for at least 6 months. They must be quite keen. I hear those Welsh immersion schools are excellent, so we may just get out of this country after all.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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will of the healthy makes up the fate of the sick.

« Reply #164 on: December 09, 2011, 06:08:45 PM »

 :cuddle;   thinking of you always....

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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« Reply #165 on: December 10, 2011, 12:19:20 AM »

    :cuddle;   I so understand how hard it is to be apart. My husband and I do almost everything together so being apart is difficult. When we were getting ready to move from CA to IL, he came out here first and was gone three months before he could come home again. Praying for you all, and that the time will go quickly.
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HE created marriage and children.
Think about it! LOL!
cariad
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What's past is prologue

« Reply #166 on: December 14, 2011, 07:59:46 PM »

Thanks Rachel and CebuShan! So far the time is flying by. This is what makes me want to stay in school or get a part-time job - I don't really have loads of time to miss him. I wish a cleaning pixie would sneak into my house, but other than that, I cannot complain. I have good support from a friend, and as I'm sure my fellow midwesterners have noticed, it's freakishly warm here for this time of year.

Gwyn thinks he's found a decent place. The guy will agree to a six month lease and it has everything we are looking for. The primary drawback is the location - it requires driving absolutely everywhere, apparently. (I do remember this area - vaguely - from when we lived there.) With our new plan, we don't really have to worry about schools until August, so that's not an issue, and the boys and I will not be there most of the time so it does not have to be perfect. A safe area and close enough to his work that he does not have to spend his life commuting is the goal at the moment. We have two cars out there already, so it might just work.

OK, and today's chapter is entitled "You just never know!"

I mentioned attending the mediation recently, for the lawsuit. Did not go too well, and there is a status conference with the judge on Friday. (I do not have to attend - defendant does.)

Well, the lawyer and I were trapped in this room together for much of the time, so it was all about getting to know each other. He shared with me that his wife has had two kidney transplants! She had scleroderma and it has attacked her kidneys. Her first transplant lasted only ~4years, the second is still holding strong at over 6 years. So, when I kept mentioning that this defendant was messing about with us in March of 2010 while my husband was donating a kidney and stem cells to me (hinting that we are the very definition of 'sympathetic plaintiff') he had some appreciation for what I was talking about. I was able to tell him about the trial at Northwestern and he said something about how he did not know what happens if her second kidney fails, and I was able to tell him that it should all be fine so long as her PRA is not too high. I don't think he exactly knew what PRA was, but he said she probably knew her level, and I think just getting the term out there, if she does not know, she will be able to find out.

So, anyhow, I know I've wittered on about this point many times, but when we assume that others cannot possibly understand, you just never know. The person to whom you are speaking may know more than they are letting on. Trust me, I've been shouting from the rooftops about how this defendant is hurting a sacred kidney/stem cell donor, but it took conversational desperation for our attorney to open up to me about his wife's story.

Lecture over. Class dismissed.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
cariad
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What's past is prologue

« Reply #167 on: December 18, 2011, 02:48:32 PM »

I am really sad today. My mother called, need I say more?

She is in the hospital with her own mother and I'm sure it's exceedingly stressful and upsetting for her, but I cannot be arsed to deal with her feelings. My grandmother is in her mid-90s and has declined really rapidly. It won't be long now, and it's for the best, even my mother can see that. My mother wanted to know what I wanted for Christmas. I am at my wit's end trying to write this paper and not being able to concentrate. My husband is missing major moments in his kids' lives and I wind up sitting them in front of a television and telling them I cannot play with them right now. I've been a pretty awful mom lately. I've been taking my stress out on my kids, shouting a lot.

I told my mother that everything got messed up with my birthday present so I don't really want to deal with a Christmas conversation. She said that of course they were going to get me something and I just shouted 'what the f*** do I need with material things right now? I don't want ANYTHING that you can buy me.' I told her to go be with her own mother, and she said she did not want to leave the conversation like this and I told her it was no different to everything else that she's let hang until it's far too late through my entire life, that her mother needed her a hell of lot more than I did and that she should just pay attention to her. Goodbye. My grandmother, though we were never close, is one of the sweetest people you will ever meet in your life, as was her sister. Maybe it skips a generation (or several)? :waiting; 
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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« Reply #168 on: December 18, 2011, 04:19:41 PM »

 :grouphug;

Why is it that our relationships with our parents have to be so complicated ? ? ? ? ?  :cuddle;

Just sending a hug to help you through this.

 :grouphug;
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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. :)
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« Reply #169 on: December 19, 2011, 09:52:33 AM »

    :cuddle;    You are not a bad Mom, CarIad, just a stressed one. Since I have been in and out of the hospital several times lately, Jim & I are both so stressed. Our way of dealing with it has been a lot of shouting. We didn't realise how much until the dog started to whimper. So we are trying to tone it down for the dog! (he was in an abusive situation). Right now, I'm just trying to stay out of the hospital for Christmas. It will get better for you all. When does Gwyn get to come home? Anyway, here's another hug for you. Keep hanging in there!    :cuddle;
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« Reply #170 on: December 19, 2011, 10:52:50 AM »

Sending you hugs, the kids will be ok, my mom was crazy and worse, I won't get into it, but it was tough for my sisters and I. And look how great I turned out (hahaha!!) You do the best you can to get through these things.  :cuddle; :cuddle; :cuddle;
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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
cariad
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What's past is prologue

« Reply #171 on: December 21, 2011, 08:43:09 AM »

Why is it that our relationships with our parents have to be so complicated ? ? ? ? ?  :cuddle;
Aleta, I think if we could answer this question, there would be a Nobel Prize in it for us!

Thank you, CebuShan, for the words of support and encouragement. It has got better now that I have my one stressful paper handed in and almost done with the second which is due at 5PM this evening. Better get back to it....

Sending you hugs, the kids will be ok, my mom was crazy and worse, I won't get into it, but it was tough for my sisters and I. And look how great I turned out (hahaha!!) You do the best you can to get through these things.  :cuddle; :cuddle; :cuddle;
Thank you, Karol! You truly are living proof that we can overcome a rocky start in life. I will keep trying to provide emotional stability for them, and other than that, just put my head down and do what needs to be done.

Thanks everyone! I am going to be OK. He returns late tomorrow (actually early Friday morning).  :yahoo; :yahoo; :yahoo;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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cariad
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What's past is prologue

« Reply #172 on: December 23, 2011, 10:50:15 AM »

G's back! Flight was quite delayed so we are both zombies today.

At salon right now waiting for color to set, bored. Someone entertain me!

Kids are so happy, and at child center now so G and I can grab lunch. Maybe the tea room? 

Last time I was there my mother and I had aTWO HOUR argument in what I can only describe as 'angry stage-whispers'. Would like to leave them with a better memory of me from this year. :)
« Last Edit: December 23, 2011, 10:51:35 AM by cariad » Logged

Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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« Reply #173 on: December 23, 2011, 11:22:05 AM »

Tea and scones! MMMMMMMMM  :cookie; :cookie; :cookie;
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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
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« Reply #174 on: December 25, 2011, 10:35:30 AM »

I hope you have had some lovely, lovely family time, soaking up the love and peace of the season.  :cuddle;

 :christmastree;

We need a smiley of the wreakage post package opening!  :rofl; :rofl; :rofl;

Love to you,

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. :)
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