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Author Topic: feeling alone  (Read 8971 times)
our last breath
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« on: February 02, 2011, 01:03:54 PM »

sometimes you just feel all alone.. People will say they understand but unless you been here..NO YOU DONT....       I hate false promises.   I am scared and feel I am the only one with these selffish feelings....
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Kitty Cat
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Lila & Smudgie

« Reply #1 on: February 02, 2011, 04:21:52 PM »

You are not having selfish feelings. These are very real feelings.

 People on this board do understand what you are going through. We all go through it. I have had to deal with all of what you're feeling every single time my husband goes into the hospital and even when he's home. The fear is very real. He just came home but may have to go back.

Please don't feel alone, we are here for you. Every one of us. If you need to vent, just to talk, ask questions, whatever it is...you can always say it all here.

 :grouphug;

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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #2 on: February 02, 2011, 04:25:58 PM »

i think mean things a lot. it is something i work on everyday...some days are better then others! hang tough!

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?
thegrammalady
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« Reply #3 on: February 02, 2011, 04:35:31 PM »

this is a place where you don't need to feel alone. sometimes just a place to rant is all you need, as often as you need it. now i'm lucky, even if my family doesn't completely understand gramma lady gets whatever she needs. not everyone on the board is as fortunate. cyber hugs actually do help. some of us have met and become friends, that helps too. we're glad you're and will try to give whatever we can.
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

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For You Are Crunchy And Taste Good With Ketchup
okarol
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« Reply #4 on: February 02, 2011, 06:05:45 PM »


 :grouphug;
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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
looneytunes
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Wishin' I was Fishin'

« Reply #5 on: February 02, 2011, 06:26:16 PM »

OLB...you hit it right on the head.  Unless someone has been in our shoes (speaking as a caregiver myself) they can't POSSIBLY understand all of the emotions, thoughts, and stress we live with daily.  When my husband was diagnosed with ESRD, I was scared witless.  ( I still am at times. ) And I have also felt very alone.  Then I found IHD and became a part of something bigger than myself and bigger than renal disease.  It's a group of folks who DO understand and who have helped me get through each day.  I hope you will come to know us as your friends and learn to lean on us like we all lean on each other.   More than one cyber hug or just a cute comment has turned my entire day around.  Let us do that for you too.   :cuddle;
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"The key to being patient is having something to do in the meantime" AU
our last breath
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« Reply #6 on: February 03, 2011, 10:33:26 AM »

thank each of you for reaching out to me.  I AM VERY GRATEFUL. He still hasn't went back to treatment and we both know each day is our gift. It has been 36 days no treatment.  He says he feels better then he has in years.  Until last night...  he said his side is hurting. I can see him getting slower and  well there is Little different in his mood today.  I still have hope....After all everything I have been told and read has either happened already and went away....or just not there...VERY CONFUSSED. .Its hard to put life (mine) on pause. It is very emotional.  GLAD TO BE ABLE TO TAKE CARE OF HIM FULL TIME  well I guess you already know...  THANK YOU ONCE AGAIN.
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monrein
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Might as well smile

« Reply #7 on: February 03, 2011, 10:35:45 AM »

Sending you a hug.   :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
lawphi
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« Reply #8 on: February 03, 2011, 03:59:10 PM »

You have good days and bad days.  A year and a half of therapy did us a world of good.  I also found a very inexpensive place to get massages.
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Girl meets boy with transplant, falls in love and then micromanages her way through the transplant and dialysis industry. Three years, two transplant centers and one NxStage machine later, boy gets a kidney at Johns Hopkins through a paired exchange two months after evaluation.  Donated kidney in June and went back to work after ten days.
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Wishin' I was Fishin'

« Reply #9 on: February 03, 2011, 09:01:41 PM »

OLB...I am sending you a huge cyberhug.   :grouphug; 
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"The key to being patient is having something to do in the meantime" AU
Poppylicious
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« Reply #10 on: February 04, 2011, 10:16:42 AM »

OLB, my heart really breaks for you, and right now I really can't begin to understand just how very painful, emotional and draining this situation is for you.

Sending you the biggest *huggles* I have ...

You are not selfish for feeling the way you do. We all feel alone sometimes, even when we're surrounded by those who love us and think they know how we're feeling.  You are an amazingly courageous woman.

I found another massive *huggle* for you ...  :grouphug;
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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 #11 on: February 04, 2011, 11:55:40 AM »

As you say we all feel alone and frustrated and guilty for feeling like this. It is not easy to be a care giver, it is frigging hard work but we do it because we love that person. This last week my husband has been suffering really bad with his arthritis  ( not his dialysis) in his knees which is really crippling his walking, I feel so guilty because he is always on about the pain and I can not do any thing about it. It is doing my head in, all we talk  about is dialysis and pain. I feel like running away to-day, do you want to come with me? We could have a cyber run away day. Who's with me.
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looneytunes
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Wishin' I was Fishin'

« Reply #12 on: February 04, 2011, 04:44:00 PM »

Billybags...I'm WITH you!  Where should we go?  I'm thinking someplace warm with fruity drinks and little umbrellas in them.  Maybe Bajanne will let us come visit her.  Or maybe you already have a place in mind.... 
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"The key to being patient is having something to do in the meantime" AU
billybags
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« Reply #13 on: February 05, 2011, 03:49:43 AM »

Well looneytunes, that is 2 of us. I fancy a nice 5* hotel fully inclusive, in the country so I can walk for miles, I also want a beach near by so I can swim in the sea. Wine is my tippler, so plenty of that. I think the English weather is getting to me. Get those running shoes ready.
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looneytunes
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Wishin' I was Fishin'

« Reply #14 on: February 05, 2011, 08:30:45 AM »

BB...Wine is good with me....and my running shoes have been ready for quite a while.

OLB....how are things going with you.  Thinking of you.  :grouphug;
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"The key to being patient is having something to do in the meantime" AU
vcarmody
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« Reply #15 on: February 05, 2011, 01:16:04 PM »

 :grouphug; I've been checking back regularly looking for updates. Your feelings are not selfish, they are yours and that is the way you feel, plain and simple, can't change how you feel. 
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Caregiver to husband Chris, NxStage 11-2009
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« Reply #16 on: February 05, 2011, 06:01:42 PM »

You are not selfish at all.  Kidney disease effects everyone in the family. It changes life drastically.  I am sorry for what you are going through.  Keep posting here-- you will always find someone who understands.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
our last breath
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« Reply #17 on: February 08, 2011, 10:06:05 AM »

thank you and yes lets run away...  we are getting another snow storm here  so lets go somewhere warm..      THANKS EVERYONE FOR THE SMILE I GOT JUST FROM HEARING IM NOT ALONE.. :shy;  I do pray each of you and your family-- care takers are having a wonderful and safe day.
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looneytunes
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Wishin' I was Fishin'

« Reply #18 on: February 08, 2011, 04:03:57 PM »

OLB...so glad to see you post.  And we are also getting snow here in the Ozarks.   So...I'm with you.  Someplace warm and tropical where we can sit and bake in the sun! 

Has your hubby gone back to treatment yet?  Is he doing ok? 
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"The key to being patient is having something to do in the meantime" AU
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« Reply #19 on: February 08, 2011, 04:38:36 PM »

    :grouphug;   :grouphug; :grouphug;
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One day at a time, thats all I can do.
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us and fam easter 2013

« Reply #20 on: February 08, 2011, 07:11:05 PM »

oh, what i have missed..  Im so sorry OLB for your pains.  It sounds like you have gotton some good comfort from others who truly do understand, and hopfully, your not feeling alone in this anymore.  It's a scarry place to be, and i hope that your life has smoothed out a bit?? Blessings to you, and i hope that we all can take a 'get away' trip.  Im sorry i missed out on the other one you guys got to go on  :'(   But i DO hope it was fun :p  Hugs to all our caregiving friends.. Blessings to all
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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
our last breath
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« Reply #21 on: February 09, 2011, 02:55:03 PM »

still no..  he hasn't been to treatment for 42 days.....he says he is feeling better then he has in along time..  He looks good..and not throwing up..He was ALL the time he was doing treatment...i know what is happening but we are trying to live as normal as we can...He used the bathroom once today so he still is urinating.  Little......Very cold here today sunny  high of 12.... Spring is March 20Th......Thanks again
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looneytunes
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Wishin' I was Fishin'

« Reply #22 on: February 09, 2011, 06:33:41 PM »

OLB, thinking of you both daily and keeping you in my prayers.  Not one of us knows what tomorrow brings so we try to make the most of each day we are given.   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
okarol
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« Reply #23 on: February 10, 2011, 07:58:54 PM »

 :grouphug; :grouphug; :grouphug;
OLB, you've been on my mind today. Hope you're ok and hubby is comfortable.
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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 #24 on: February 11, 2011, 01:43:51 PM »

OLB, hope everything is ok.

*huggles*
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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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