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Author Topic: A silly thing  (Read 4707 times)
KICKSTART
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« on: October 17, 2009, 02:19:10 PM »

got me all upset today when i first went in for my hemo and all because of a throw away comment i ended up in tears . The sister came over with my file (containing my notes/details etc) and said Oh i need some more info off you , you only have one next of kin listed here , give me some more, and i replied there's only one because thats all i have , then burst into tears when it hit home and she just said ooh right and walked away . The rest of the day was ok though' ..ish !!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
jbeany
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« Reply #1 on: October 17, 2009, 02:30:40 PM »

 :grouphug;
I get the same thing - I'm in short supply on blood relatives!
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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.

Darthvadar
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« Reply #2 on: October 17, 2009, 02:50:06 PM »

Me too...

Just got Mum, and when she goes, well........

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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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« Reply #3 on: October 17, 2009, 05:06:57 PM »

I can understand how that would make you feel. All alone and vulnerable. Sorry it brought you to tears, hope it doesnt happen again.
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One day at a time, thats all I can do.
lizabee
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« Reply #4 on: October 17, 2009, 05:44:15 PM »

:(  I have my husband and dad...I find it hard sometimes without my mom
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Bub
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« Reply #5 on: October 18, 2009, 08:22:39 PM »

I can empathize.  I have no close blood relatives but have been blessed with many great friends.  I bet you too have many friends and are surrounded by people who love you!  Remember that you cant choose your relatives and they cant choose you.  But your friends all and each specifically choose you to love and care about.
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billybags
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« Reply #6 on: October 18, 2009, 11:13:39 PM »

Oh Kickstart, sorry to hear this upset you. I don't suppose for a minute the sister meant to hurt your feelings. I suppose it does bring it home to you, not every one has a long line of relatives. With out my immediate family, son and daughter I would be the same. Lots of kisses.
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KICKSTART
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« Reply #7 on: October 19, 2009, 02:27:43 AM »

I can empathize.  I have no close blood relatives but have been blessed with many great friends.  I bet you too have many friends and are surrounded by people who love you!  Remember that you cant choose your relatives and they cant choose you.  But your friends all and each specifically choose you to love and care about.

Bub , you obviously havent read a lot of my posts from the past . I wish i could say i had lots of friends but i have none ..well none since i got ill ! Just me and my dogs !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Des
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« Reply #8 on: October 19, 2009, 02:51:46 AM »

Friends and family........

Kickstart, I am so sorry to here that you are really "alone". 

I don't have friends as well.... once the disease kicks in they fade away over time.  If it wasn't for my hubby and kids.... well I just don't know how you do it!

I am thinking of you.

hugs

 
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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
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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)
iketchum
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« Reply #9 on: October 19, 2009, 05:55:56 AM »

Kickstart, you say you have no freinds, what are we, chopped liver? I have seen people on IHD try to help you and you dismiss them. Let us be your freinds, thats why we are here.
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Goofy
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« Reply #10 on: October 19, 2009, 05:59:35 AM »

Both my parents are gone and I only have one sister that doesn't talk to me.  But I do have my husband and children.  My parents have been deceased a long time but I still think about them.  My mom died first and dad about 7 years later.  Its so weird but To this day I feel like on orphan.  I really do.  My husband keeps saying I have him and the kids.  I try to explain that its a different relationship but he doesn't understand how I could feel that way but his mom is still here so maybe that's why he doesn't get it.  The dad was out of the picture years and years ago.

Friends.........ha.  I found out years ago what "friends" are all about.  In the last few years, I've ended quite a few long term relationships. Its funny, but I put up with a lot of things over the years with friends but as I get older I can't put up with it any more.  I've been hurt too many times.  I thought why put up with all the hurt and selfishness.  I'm in control of my own life.  So instead of getting hurt, I just choose not to have a relationship anymore.

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Bajanne
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« Reply #11 on: October 19, 2009, 06:56:50 AM »

This thread is making me feel a little guilty.  I have loads and loads of family.  My father had 5 brothers and 3 sisters and they were so closely knit that as kids all of his siblings were like parents to us.  because of that all of us cousins are very close.  Twelve years ago, I left my home country Barbados to come and live in the British Virgin Islands, and it was like a relief to only have my daughter here as family.  I also have to add that my list of close friends is also quite large.   So to me, it was very liberating to only have to think of my daughter.  Now it is only my daughter, my grandson and me!  So I am feeling a bit selfish now.
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
KICKSTART
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« Reply #12 on: October 19, 2009, 07:42:57 AM »

Kickstart, you say you have no freinds, what are we, chopped liver? I have seen people on IHD try to help you and you dismiss them. Let us be your freinds, thats why we are here.


I beg your pardon ?  I dont not dismiss anyone , especially people on here !!! Im talking real in the flesh friends , not virtual ones. I consider everyone on here an asset , but its hardly like i can meet up for a coffee and a natter with them is it ?
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Des
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« Reply #13 on: October 19, 2009, 07:53:05 AM »

Kickstart, you say you have no freinds, what are we, chopped liver? I have seen people on IHD try to help you and you dismiss them. Let us be your freinds, thats why we are here.

You get friends and then you get "friends". The friends on IHD are people that are friendly and caring. You can't phone someone on the other side of the world to go with you to do the shopping because the bags are too heavy to carry to the car. You can't ask them to just sit with you after you had bad dialysis. You can't ask them over when you are too tired to walk to the front door or to cook and clean for yourself. You can't hold them and cry when things become too much for you. You can't share "everything" with them.

I know what you are saying but lets face it. The minute you log off you go back to your own world. FAAAAAR away from the IHD family.
I wish I can have IHD online 24hours a day but no one really can.   

KS knows we are here (online) for her. Thats why she comes here.  But she also knows that if her network connection fails she will be all alone.
And it is that alone that gets you when you have no-one else around.

KS I get it... and I am thinking of you even after the log off button was pushed.
Lovies
D
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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)
pamster42000
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« Reply #14 on: October 19, 2009, 09:24:43 AM »

Oh Kickstart..how I feel for you. I have moments when for just like your case....something other people take for granted really hits you personally emontionally.

I'm not going to give you advice about making friends because that's easier said than done. Just know you have support here.

 Also pets are wondeful to have...they know when you are sad and they try to comfort you. They are truely loyal.
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Bub
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« Reply #15 on: October 19, 2009, 01:13:04 PM »

I am sorry to hear that you feel you dont have any friends.  When I got ill and my kidneys failed, it was only then I was able to realize what dear friends I really had around me.  They didnt let me down.  They stuck beside me and provided me the support I didnt have from a family.  They were my family.  I cant imagine being in your situation.  I dont know how I would cope.  I hope that we, your "virtual" friends can provide you with some  small measure of emotional support.  You really sound depressed.  I dont mean to hurt or insult you in any way, but you may need to talk to a professional about depression.  I did, and it made a world of difference!
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Poppylicious
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« Reply #16 on: October 19, 2009, 01:37:13 PM »

... but its hardly like i can meet up for a coffee and a natter with them is it ?

Awww, I'd meet up for a coffee and a natter if I lived a little closer to you (and wasn't so shy!). 

(Really, I would.)

 ;D
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zona
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« Reply #17 on: October 19, 2009, 02:01:28 PM »

KICKSTART, I havent had a real friend in years,I do have my husband and kids,but a real true friend who I could call on when I need help,nope People around me are too busy to care. Or so it seems. I live in a town full of trophy wives who have nothing better to do than to spend their day getting botox or shopping. So yeah,I cant relate. Goofy,I know what it is to feel like an orphan,my parents are gone too,...my dad when I was 7....my mom when I was 32. You never stop missing them or needing them at any age. The rest of my family..........dysfunctional! My aunt is going around telling everyone "poor Zona you know shes dying of that disease that killed her daddy". That is why I came to this site to fill the void. People on here do care, I appreciate the caring I have found here. But at the same I do understand whats its like to wake uo in the middle of the night and feel oh,if only I could call someone and talk.Or to have someone to cook a meal for you when you cant. My husband is wonderful but he needs a break from all this....he has to make a living so he cant always be here.
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zona  diagnosed with Igan 1993
         pre-dialysis gfr13% listed for transplant March 2010 Received transplant from deceased son August 2013. My son my hero.
KICKSTART
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« Reply #18 on: October 19, 2009, 02:15:43 PM »

I am sorry to hear that you feel you dont have any friends.  When I got ill and my kidneys failed, it was only then I was able to realize what dear friends I really had around me.  They didnt let me down.  They stuck beside me and provided me the support I didnt have from a family.  They were my family.  I cant imagine being in your situation.  I dont know how I would cope.  I hope that we, your "virtual" friends can provide you with some  small measure of emotional support.  You really sound depressed.  I dont mean to hurt or insult you in any way, but you may need to talk to a professional about depression.  I did, and it made a world of difference!

Bub; im sorry you just dont get this thread at all do you ? Maybe read some of the other peoples replies , if thats the case we are all depressed !!!! Having no friends does not mean you are depressed , it means you have no support and are lonely !!!! This is not about IHD , its about the real world and you will see im not the only one that feels like this.  :thumbup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
KICKSTART
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« Reply #19 on: October 19, 2009, 02:18:09 PM »

Dear All , thankyou for your replies , i find im not alone in the real world and how i feel. I just wish we werent all spread out all over the world as i think i would have some of the best friends a person could wish for if we were all a little closer to one another !  :grouphug;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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« Reply #20 on: October 19, 2009, 03:26:10 PM »

I dont think it is a little still thing. I know what it is like to feel alone. I just feel as though i do not have much of a support system. It is me, my mom, my grandmother and my 3 year old daughter. Yes I live with these people but they are not much of a support medically at all. My mom nor my grandmother has a drivers license or a car, and I am the only person who can take anyone anywhere. I am not married and I am an only child.
 It does make me feel bad when people think i am going to get a live donor and they just dont understand that not one person i know has even gotten tested!
 i feel bad sometimes because i am 26, and not married. I do wish i could get married because then there might be a possibility of being able to go on home hemo, but since i cant make that happen, then it is PD for me.
 At the same time, I have thought about getting off the transplant list just because do not feel as though i have anyone that i can count on to take me to and from the doctors post transplant.
 Yeah that lady did not have to rub it in. Staff really need to reword their questions so that they do not come across as rubbing in something that might be sensitive to a patient.

Lisa
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« Reply #21 on: October 19, 2009, 04:19:01 PM »

I'm sorry that we feel alone sometimes.
It's hard for other people to understand this kidney disease thing we have to deal with.
Kickstart, I have 9 siblings and both my parents are still alive, yet I feel so all alone with this disease anyway. I do have a husband of 21 years and two teen-age children and they are everything to me. I wish you had someone too, because it makes what we deal with everyday just a little bit easier.
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Sunny, 49 year old female
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RichardMEL
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« Reply #22 on: October 20, 2009, 06:01:02 AM »

I can relate to what some of you are saying.

I don't really have any real life REALLY CLOSE friends. I have good and dear friends, but not the sort that I feel I could rely on 24/7 (not that I am that sort of person anyway - I wouldn't *want* to call someone at 2am because I couldn't sleep and it was all getting too much.. because I wouldn't want to disturb them)... I have friends I work with who I know care - in so much as a co-worker can care. For family, I have a  brother and a sister. We are fairly close, but try as they might they can't fully understand what it's like, and there's only so much they can "do" for me. They both got tested to donate which was so wonderful I will never forget that. Day to day though... well I pretty much look after myself and my cat. Not perfectly mind you, but I get by. I guess I value my independence as much as anything else, so I wouldn't be asking them for lots of things anyway. Strangely enough though neither of them I feel I can *talk* to.. I mean really sit down and let out all the worries and concerns and all that. I don't know why. We are very close knit because our family is so small, yet somehow I just wouldn't do that. Besides, I cope with things pretty well 85% of the time. There are just odd times when it does get a bit much.. the waiting gets on top of me.. the constant dreams of wanting things better and wondering when it will be and the frustrations of dealing with treatments, feeling tired and horrible afterwards, the diet and fluid restrictions etc. I think we all have that so I certainly don't feel that I am anything/anyone special.

I see IHD as part of a support network. No we can't catch up for real very well (though obviously some do :) ) but late at night (I'm typing this near midnight) when there's nobody else we can feel we can turn to, or when it's all a bit much to do much more than read a computer... then IHD is here... I think that forms a valuable part of our support structure - specially when there's few other options for some of us.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #23 on: October 21, 2009, 04:00:45 PM »

Kickstart,

    I'm not being cruel when I say that it seems like your every post, for me, is a joy because I have a wife, a daughter, and three grand-kids. Not because you have so few relatives, but because I'm so thankful for mine. I find myself complaining about my daughter and my "crumby" Grand-kids (I say crumby because no matter how much I clean before they come for the weekend, there's crumbs everywhere within, what seems like 15 min. of their arrival) And I hate my wife's gambling. But for all my complaining, every weekend when my daughter calls with some reason why we have to take the GKs for the weekend, before she even calls, I've a;ready gone and got apple juice and cookies and am looking forward to the GKs coming over.  No matter how much I complain about my daughter being 35 going on 13 y/o, I'm always happy to see her in person. And when my wife gets home from work, then the casino, and comes walking through the door, I'm always glad to see her. And then there's always the continuing fights between my 6 y/o and grand-daughter and the 7 y/o grand-son, which usually happens on Sunday morning after they stayed up too late on Saturday night. At the time it drives me crazy, but I'm always ready next weekend for them.
    Then there are the people at the center. The caregivers seem to put on a happy face no matter what's going on in their lives. The patients seem to make an effort to be, if not friendly, not unfriendly. I guess it all comes down to deciding to have a good day. No matter how I feel, It's my choice whether I'm going to have a good day or not. My life is lived with dialysis and everything that goes on with kidney disease, and then some. Thing could be completely different if things were to change.
Thank you,
jmz
 
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