I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: lost sheep on January 12, 2007, 12:42:12 PM

Title: What makes it worth the effort?
Post by: lost sheep on January 12, 2007, 12:42:12 PM
I am relatively new to this "community" and I have been wondering.  Is this how life is meant to be lived?  I suppose if you have dependants there are reasons to "buy" time ...but if you don't?  Isn't it all just for nothing?  It's been 2 months now since I acquired the ability to see life like so many others never have a chance.  When you look death in the eyes your preception is much different.  Living people can not and would not understand as we do.  What is so wrong with leaving this life which has been lived to the absolute fullest and going on to the next?  How many people live their lives to the fullest?  How many live live like herded goats?  Can you say, "I have done all I wanted to do in this life."  Living off of some machine and waiting for a possible transplant and the meds and all else that comes?  Is this life style for me, or you?  It must be difficult for living loved-ones, but they too will move on to another life soon enough.  Do you live for them?  I say no, I have always lived for living, for the gift of life, for myself, not someone else.  To live is to be free, not managing, or bearing it, or surviving.
Title: Re: What makes it worth the effort?
Post by: angieskidney on January 12, 2007, 01:16:10 PM
I was 28 when I had to go on dialysis this time around. I thought "man! No matter what it always comes down to this!? No matter how hard I work I lose it all when it comes down to dialysis? What is the sense of even trying?" It is very easy to feel sorry for ones self when you lose everything but after a bit of time you realize, there is so much more of life to live. Don't give up! I was alone, single, my family not close at that time, my mom disowned me for a year and a half til I got real sick and had to start Hemo. I felt so alone.

Well now I have been on hemo for a year (5 years on dialysis .. used to be on PD) and now I am engaged! I never would have thought there could still be life on dialysis, much less a future romantic prospect!

You never know what your future holds! Don't give up! It seems hard now but you will get through it! Talk it out, vent, rant, scream, yell! Do all you need but remember: You are NOT alone now! ;)  :grouphug;
Title: Re: What makes it worth the effort?
Post by: jbeany on January 12, 2007, 01:23:46 PM
It is an effort some days.  Knowing that I can quit if it gets to be to much is a constant reassurance for me.  I know that I am choosing to do this, and I continue to make the same choice every time I walk into the dialysis unit.  I do get overwhelmed sometimes, and I hate the feeling that my whole life is all about dialysis.  I don't have any children I'm sticking around for.  I'm sure my family will go on without me.  But I'm not ready to quit.  It's not for "nothing"; it's for me.  Because I'm not done here, and I want to go on living.  I haven't done enough, seen enough, created enough, laughed enough, experienced enough.  My life, and I do still have one that doesn't involve this ugly, beeping machine, is still enough to keep me here. 

Is this how life is meant to be lived?  Only you can answer that for yourself.  I'm not ready for the alternative yet.
Title: Re: What makes it worth the effort?
Post by: meadowlandsnj on January 12, 2007, 01:42:39 PM
To live is to be free, not managing, or bearing it, or surviving.

Everyone regardless of whether are sick or not has to manage life, bear life and survive.  What is free?  Free of worry?
You will not fine anyone really free in that definition of freedom.  Free of responsibility?  Life is what is dealt to you and you have to play with what you're given in life.  I go to dialysis three times a week--so what?  I have a life outside dialysis, I don't define myself by dialysis.  I'm not ready to go yet.  God has something planned for me, something that I have to do before I am ready to go.  Things happen to you in life, it's up to you how to deal with it.  You can let life beat you up and wear you down but I refuse to do that.  I won't do it.   I'll go kicking and screaming, I wont go quietly.  Nothing that is given to me will beat me.   ;D

Donna
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 12, 2007, 02:10:04 PM
Who is feeling sorry for themselves?  Me?  I think not.  I am very content with where I am right now.  I have done more in my life than most people that I know of.  Am I supposed to do something else that I don't know about?  I don't think so!  I have already done it.  Sure I have not married or fathered any children (none that I know of)but who says you have to?  Who says this is what all people must do to achieve happiness?  Society?  Do you listen to what society says?  Are you a herded goat?  Well I'm not and never have been.  I lived my life.  Most people cant see life passed them up until they are blindsided with some major tragedy such as what we experience.  I have always lived like this day could be the last.  I never left any opportunities on the table.  I lost a father and a brother at a very young age so I have them to thank for guiding me in the direction in which they did, for had they not, I doubt I would be at such peace and thus I too would be bearing life and fighting to survive. 

Life is what is dealt to you?  I don't believe so.  Yes, in simple thoughts it may be.  If you get into a car accident this may be part of life that is "dealt"  so to speak but If you understand what it is to live than you determine your life not some deck of cards.  If you feel in such a way as not to accept the end of this time and the start of the next than you must not be ready.  But is it possible for someone to have done all they wish to do and be at a peace only few understand when their time is up?  I will say it again, I have never been a herded goat and I will not be now.
Title: Re: What makes it worth the effort?
Post by: meadowlandsnj on January 12, 2007, 02:26:13 PM
Who is feeling sorry for themselves?  Me?  I think not.

It's okay to feel sorry for yourself sometimes.  We all do it.   

Quote
  I am very content with where I am right now.  I have done more in my life than most people that I know of.  Am I supposed to do something else that I don't know about?


Who knows what might be up ahead of you to do?

Quote
I don't think so!  I have already done it.  Sure I have not married or fathered any children (none that I know of)but who says you have to?  Who says this is what all people must do to achieve happiness?  Society?  Do you listen to what society says?  Are you a herded goat?

Happiness in life can mean anything, it means different things to different people.  Who's to say what makes anyone happy.  

 
Quote
Well I'm not and never have been.  I lived my life.  Most people cant see life passed them up until they are blindsided with some major tragedy such as what we experience.  I have always lived like this day could be the last.  I never left any opportunities on the table.  I lost a father and a brother at a very young age so I have them to thank for guiding me in the direction in which they did, for had they not, I doubt I would be at such peace and thus I too would be bearing life and fighting to survive.


I'm sorry about your brother and father.  That was a double tragedy for you to bear at a young age.

Quote
Life is what is dealt to you?  I don't believe so.  Yes, in simple thoughts it may be.  If you get into a car accident this may be part of life that is "dealt"  so to speak but If you understand what it is to live than you determine your life not some deck of cards.
 

I was "dealt" this to deal with in life.  This is what I have.  I can't refuse it.  Maybe to you it sounds simple but it works for me.   :)

Quote
If you feel in such a way as not to accept the end of this time and the start of the next than you must not be ready.  But is it possible for someone to have done all they wish to do and be at a peace only few understand when their time is up?  I will say it again, I have never been a herded goat and I will not be now.

I can understand how you feel and why you wrote that, I respect your feelings.  I think your tone with me was a little harsh but I  think it's good you can get out your feelings by writing them.  I hope you can find some kind of peace or closure or whatever you're looking for.  




EDITED:  Fixed quote tags - Goofynina/Admin.
Title: Re: What makes it worth the effort?
Post by: mallory on January 12, 2007, 03:25:37 PM
Lost Sheep,  If I understand you correctly, I agree with you.  If you, personally, feel that you have lived your life to the fullest, you have nothing left that you want to do, no one left that you want to live for, then, yes, I would support your right to make a decision that you've had enough without living with dialysis. 

For the vast majority of us on this site, including myself, we are not at that point.  We are not "herded goats".  We are fully capable of making our own decisions, as are you, and we have chosen to not only live, but thrive, on dialysis, with a transplant or with ESRD.  We still have things we want to do, people we want to live for, and meaning to our lives.

While I would support your right to make the decision that this is not how you want to live, I would encourage you to really think about it, and to discuss it with the people you care about before you make a decision.  Only very rarely are you the only person affected by the decisions you make.

Title: Re: What makes it worth the effort?
Post by: Epoman on January 12, 2007, 05:09:34 PM
I am relatively new to this "community" and I have been wondering.  Is this how life is meant to be lived?  I suppose if you have dependants there are reasons to "buy" time ...but if you don't?  Isn't it all just for nothing?  It's been 2 months now since I acquired the ability to see life like so many others never have a chance.  When you look death in the eyes your preception is much different.  Living people can not and would not understand as we do.  What is so wrong with leaving this life which has been lived to the absolute fullest and going on to the next?  How many people live their lives to the fullest?  How many live live like herded goats?  Can you say, "I have done all I wanted to do in this life."  Living off of some machine and waiting for a possible transplant and the meds and all else that comes?  Is this life style for me, or you?  It must be difficult for living loved-ones, but they too will move on to another life soon enough.  Do you live for them?  I say no, I have always lived for living, for the gift of life, for myself, not someone else.  To live is to be free, not managing, or bearing it, or surviving.

You are kidding right? I just read you "intro" and from I read here and in your intro, you are 31 years old and been on dialysis 2 months? I am going to cut you some slack because you are new to this but let me quote you from a few of your posts:

Quote
Hi people.  I join you all in facing the end of this life and looking at the next.  I'm male 31 years, single, no kids, no wife, out of work (health reasons), some family and friends, and not sure about living this way.  I have always enjoyed my days like they might be the last and now they seem to be.  "Sex drugs and Rock and Roll" lifestyle has run out.  Not sure if I can do it anyother way.  Especially this way!!!

I join you all in "facing the end of this life" What the p*ck? You are 31 years old, you may live another 50 years "I have always enjoyed my days like they might be the last and now they seem to be". Oh my GOD did someone throw you a "pity" party? "Sex drugs and Rock and Roll" lifestyle has run out" Oh man, sex, drugs, and rock and roll.... you are lucky that kidney disease is ALL you got. You have lived 30 years on this earth healthy from what I read in your posts, right? I mean at least healthy enough for sex, drugs, and rock and roll.

Let me quote you again:

Quote
I lost a father and a brother at a very young age so I have them to thank for guiding me in the direction in which they did, for had they not, I doubt I would be at such peace and thus I too would be bearing life and fighting to survive.

You call this fighting? I say you are just "alive" Anyone can "Stay Alive" on dialysis, but the FIGHTERS are the ones who "LIVE" You are lucky, let me ask you this. Can you see? Can you walk? Can you have sex? Can you hear? Can you shit in a toilet and not a bag attached to you, Can you think, and remember your past, Are you burned, lying in a burn ward some where? Has a doctor told you have Cancer and will be dead in 3 months? You are MUCH better off than a lot of people, You have kidney disease (which I wonder if it was brought on by the drugs) many people live a full life while living via a machine. It may be hard and it sucks, but you must make the best with what you got. Don't get me wrong I hate living like this, that is one of the reasons the site is called "ihatedialysis" but I am a FIGHTER and I always will be, I will leave this life knowing that I tried my best at everything I have set out to do. I am 34 and I have been on for over 13 years of dialysis and I never wanted a transplant, so I have been dialyzing for 13 years straight. So you do the math as to when I started. I WISH I started at 31 like you. You got an extra 10 years on me. But what about the people who start as a infant? or as a child?

If you were in your late 60's I could understand your attitude, but man you are YOUNG and unless you quit you are going to be around for a long ass time. For all you know you will meet a woman and get married and father 5 kids, we just never know in this life. In this world LIVES turn on a dime. You have not even begun your life yet. I am not saying that marriage is what you want or need, I am just saying you never know. Take this post however you want good or bad, it's up to you. But from your posts I say you are at a "pity party" and you are the guest of honor. Now stop this shit and get on with life, make some plans to live. You are 31 years old, you can STILL have SEX, and ROCK & ROLL, I would stay away from the drugs though.

- Epoman
Owner/Admin

P.S. To answer your question. "Is this how life is meant to be lived?" Well, no it's not. But if life give you lemons... you make p*ckING lemonade and sell it for a profit.
Title: Re: What makes it worth the effort?
Post by: okarol on January 12, 2007, 05:34:50 PM
I am relatively new to this "community" and I have been wondering.  Is this how life is meant to be lived?  Can you say, "I have done all I wanted to do in this life."  Living off of some machine and waiting for a possible transplant and the meds and all else that comes?  Is this life style for me, or you?  To live is to be free, not managing, or bearing it, or surviving.

I have seen alcoholics rise up from the worst despair and change their lives. I have seen people mired in
depression find help and turn their lives around. I have seen people with no legs wheel themselves into
dialysis with a nod and a smile. I have seen mother's whose babies die of cancer pick themselves up and
campaign for changes that will help another baby someday.
What you are experiencing is difficult, but I think many people are suffering and managing and coping
and emerging from really disastrous experiences. You just don't know what goes on in another person's
home, their life, or their mind. Everyone else looks like they are okay, but it's usually not the case.
If you need more help, ask for it. Don't give up. If you need a purpose in life, reach out to someone else.
I imagine there are other people who could use a handshake and a smile. I wish you all the best.


Title: Re: What makes it worth the effort?
Post by: Zach on January 12, 2007, 07:13:54 PM
At least stay around to watch my newest PBS documentary, These Kids Mean Busines$.

It should be broadcast in September of 2007.  I've been producing public television documentaries for the last 15 years.

I've been on hemodialysis for the last 25 years.     ;)
Title: Re: What makes it worth the effort?
Post by: Bill Peckham on January 12, 2007, 07:58:42 PM
I took my first trip abroad on dialysis after four years and six months, I was thirty two. To date I have been to twentynine countries on five continents.

I was unemployed for the the first four years and three months of dialysis, I've now been working through the carpenters union twelve years. I go to work every day.

Never married, never close. Why? I think it was because I took myself out of the game. You can, but you don't have to; I wonder what I would be doing today if I could have posted to the internet when I first started dialysis.

One thing to consider: freedom from your expectations can be very liberating if you embrace it.
Title: Re: What makes it worth the effort?
Post by: angieskidney on January 13, 2007, 07:47:58 AM
All very good advice and I have to say, I agree with Epoman as well! You seem to be saying that you don't want to live your life like this but at least you had the chance to have a "normal" life enough to feel this is not normal! You might hate it because it is a drastic change to the life you were used to! Now you have restrictions and limitations but so now you can't have it always your way! That is life! But if you feel your time is done then that is your choice. I have known lots of people younger than me who have died who didn't have a choice. You do! If you want to end it just because you don't want to live your life on dialysis then that is up to you! You might be interested in reading another thread we had going about "Is Quiting Dialysis Suicide?" http://ihatedialysis.com/forum/index.php?topic=1113.0

And here is another: Story about ending dialysis - from Wall Street Journal Nov.2005
http://ihatedialysis.com/forum/index.php?topic=2037.0
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 13, 2007, 09:13:02 AM
Mallory - thank you.  It's reassuring to know that you're not he only one.

Meadowland - contrary to your interpretation I am not and do not feel sorry for myself.  Happiness does mean different things to different people, but you can't deny that for most that is generally dictated by society.  I see it everyday.  My tone was not and also is not intended to be harsh.  People perceive things differently, alot depending on past experience.  Just because that is what you may be looking for doesn't privilege you to judge that upon me.  Not all people are the same.  In fact everyone is different just as happiness is different things to different people just as this hand of cards you were Dealt can be played many ways depending on the player.  No disrespect was or is intended.  Everyone is undoubtedly entitled to their own decisions.

Epoman - I understand that this is your site.  I think what you do here is commendable and pridefull.  However, I am not kidding about my feelings, thoughts or beliefs.  I was raised to have integrity, and honesty, and to be loving and trustworthy.  "Sex drugs and rock and roll" doesn't make someone "the devil" , is this the 1960's?  I have taken chances in and with my life.  Taking chances and laying it out, thats living!  This lifestyle is far far from that.  There has been no pitty party and I am well aware that there are many other poor souls that have their life much more difficult.  I think you forgot those poor starving children in Africa.  Why do you have to be in your 60's or 70's for it to be understandable that a person's "time is up"?  There are some people in their 80's who missed out on life for one reason or another.  31 to you may not seem fullfilling but then again you are not me.  You have not lived my time.  I respect your post, your opinions and such.  I do not however act like I know who you are just because I read some thread you started.  For you to say that  I've not even begun my life yet is ridiculous....outrageous.  Try meeting someone at their level, whereever they are instead of writing a couple of paragraphs talking to them like you know who they are (before even trying to learn) and like you have been through what they've been through and to listen to you because "you know" and you are omniscient.  I am somewhat disappointed with this kind of attitude coming from the top.  I honestly expected a more thought out response.  I don't like lemonade.  Rock out with your .....

okarol - yes, I have seen and been told about events as you describe and I also have seen the counterparts to those people.  I want not to discourage anyone from rising above and out of their position.  The power of such desire has done amazing things.  I feel I served my purpose for this time and I am curious as to if I was alone in this feeling of satisfaction.

angie - so true about freedom from expectations.  Thats what I'm talking about when I say living.  Screw what society says and their expectations and live free.
Title: Re: What makes it worth the effort?
Post by: kitkatz on January 13, 2007, 09:26:12 AM
I figure if I am going to live with death riding on my shoulder, I am going to give him a few scares!

I never figured I would live past 40 and here I am kicking and screaming into 44.  I figure life has a weird way of working things out.  I would stick around to see what happens next.  I have read stories about people who thought this life was all they had, then something wonderful somes along and just scoops them into some fantastic part of their life. There are times that all of this sick crap, I mean dialysis and the things that happen because of it, gets to me and I wonder if I can take anyomore.

Between you, me, and the rest of this board it is strictly up to you what you want to do with your life.
Title: Re: What makes it worth the effort?
Post by: Zach on January 13, 2007, 09:28:38 AM
31 to you may not seem fullfilling but then again you are not me.  You have not lived my time.

Then tell us more about yourself ... and what your life has been like up to this point.
Maybe then we can understand your point of view in saying, "I have done all I wanted to do in this life."
Title: Re: What makes it worth the effort?
Post by: kitkatz on January 13, 2007, 11:49:07 AM
What makes it worth the effort?

Laughter
The love you see in someone's eyes
Happiness
The time you take for yourself
God, or whatever you think is the creator
Pets that love you
You and Me
that makes it worth all the effort!




Title: Re: What makes it worth the effort?
Post by: del on January 13, 2007, 11:57:18 AM
Lost sheep I feel sorry for you.  My husband and many other dialysis patients live a full and productive lifestyle.  My husband often says that he feels so well that the dialysis treatment is almost a nuisance.True it changes your lifestyle but so what?? Life is full of changes good or bad.  At least with dialysis you still have some form of control over your life.  Not like you were diagnosed with incurable cancer or some such thing.  Many dialysis patients live a full and productive life :) for years and with new dialysis treatments the life will probably be more close to normal.  I can only speak for my husband and his lifestyle is as close to normal as you can get.  He just has to hook up to the dialysis machine 5 nights a week and it is an inconvenience but you learn to live with it. 
Title: Re: What makes it worth the effort?
Post by: Joe Paul on January 13, 2007, 01:14:33 PM
I felt the same way, way back when I was your age....Ain't nothin nobody, specially a nobody like me can tell you, lived it all too...or so I thought. Everyday now I wake up, I thank GOD for this 1  more chance to prove HE is right. What I feel I may be going through, I trust JESUS felt before he died on that cross. You have to think, we can question it all, after all JESUS asked why, and I trust he knows more than me. We have a means to stay alive, and I believe if we have that chance, we should give it to the LORD JESUS, as he stayed alive long enough to set those free, who believe.
Title: Re: What makes it worth the effort?
Post by: Epoman on January 13, 2007, 05:50:09 PM

Epoman - I understand that this is your site.  I think what you do here is commendable and pridefull.  However, I am not kidding about my feelings, thoughts or beliefs.  I was raised to have integrity, and honesty, and to be loving and trustworthy.  "Sex drugs and rock and roll" doesn't make someone "the devil" , is this the 1960's?  I have taken chances in and with my life.  Taking chances and laying it out, thats living!  This lifestyle is far far from that.  There has been no pitty party and I am well aware that there are many other poor souls that have their life much more difficult.  I think you forgot those poor starving children in Africa.  Why do you have to be in your 60's or 70's for it to be understandable that a person's "time is up"?  There are some people in their 80's who missed out on life for one reason or another.  31 to you may not seem fullfilling but then again you are not me.  You have not lived my time.  I respect your post, your opinions and such.  I do not however act like I know who you are just because I read some thread you started.  For you to say that  I've not even begun my life yet is ridiculous....outrageous.  Try meeting someone at their level, whereever they are instead of writing a couple of paragraphs talking to them like you know who they are (before even trying to learn) and like you have been through what they've been through and to listen to you because "you know" and you are omniscient.  I am somewhat disappointed with this kind of attitude coming from the top.  I honestly expected a more thought out response.  I don't like lemonade.  Rock out with your .....

I'm not saying I know you brother, all I am saying you are just 31 years old, there is so many things I know you have not done. I may not know exactly what you HAVE done, but this life offers so much and you have not even scratched the surface. However it is your life and if you want to put up the "CLOSED" sign and leave, then more power to you. I never said sex, drugs and rock & roll makes you a devil however if you think taking "drugs" is "living" then that's your own messed up thought process. Also I never said that you had to be in your 60's or 70's to know when your time is up. I am talking about your age in general... Did you even read my post or did you just skim through it?

Anyway sorry but I have to say this..and I know I will piss some people off including you, but what else is new. I just don't understand this comment: "I was raised to have integrity" Yet you are prideful of the fact that you are or were a "Drug User"?

But anyway that isn't the issue. The issue is, do what you like, stop dialysis, continue and fight, what ever makes you happy. But obviously you are confused and are reaching out for support since you did indeed join this message board in the first place.

Sorry if my reply upsets you, however I am just speaking my mind and telling it like I "READ" it. And as long as you do it respectfully to me and to the members of IHD, you too may speak your mind.

But if you like, prove me wrong tell us all the wonderful things you have done in life. I believe "ZACH" said:

Quote
Then tell us more about yourself ... and what your life has been like up to this point.
Maybe then we can understand your point of view in saying, "I have done all I wanted to do in this life."

So tell us, some of the AMAZING and wonderful things you have done in life that makes you so fulfilled.

- Epoman
Owner/Admin
Title: Re: What makes it worth the effort?
Post by: jedimaster on January 13, 2007, 11:42:27 PM
Why keep doing dialysis?....lots of things...
My wonderful wife, her stamina, her smile, her intelligence....
My son...the light of my eyes...he is worth every second I live...he is not only a great child...he is my best friend
My friends
The sun, the light, etc....I LOVE life....
...and

I want to see the next Star Wars movie.... ;)...who knows what will happen next....
Title: Re: What makes it worth the effort?
Post by: boxman55 on January 14, 2007, 07:37:11 AM
So tell us, some of the AMAZING and wonderful things you have done in life that makes you so fulfilled.
If you need to pull the plug it is your choice. But before you do tell us your journey up till know so others can understand your passion to quit and maybe we can find something that we need to still do before we get to the point of wanting to bleed out.  Boxman55
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 14, 2007, 11:22:27 AM
Okay, sure, I will tell a few things I have achieved in this life.  I do not believe that I am alone in my accomplishments.  A lot of you may have had similar experiences and accomplishments.  Many people however have not, and then maybe even more than that, there are people who don't even realize what they experience or what they are fortunate to have.  We in this country are prone to missing the truly wonderfull meanings of life.  The majority of the population in north America is brainwashed or mis-educated on happiness, full of people who miss the opportunity to embrace life until it becomes too late.  Money is the leading culprit.  And then thats not even to mention the rest of the people of this world who suffer in the many sad ways that they do.  Some people are born without even a chance.  Some starving tribe in the north of Africa.  Tremendous over population in Asia contributing to economic problems and personal hardships.  It is unfortunate what so many of us perceive as achieving a level of success and happiness.  We all should stop what we are doing and thank god for this breath in which we breath so easily and peacefully, for it is a breath that we should feel the miracle of life. 

I'm not going to blab on with my entire life story, all the "ups and downs," the friends I have had the chance to know and the travels and their accompanying stories.  What I will say is that I can feel good with what I have done and experienced in this life and I also feel confident that karma has assured me the next life will bring the same.

I wonder what you consider to be "AMAZING" and wonderful? 

I believe I said earlier that if I had some dependant such as a child that needed my life that would not leave me feeling satisfied and at peace with life.  Not everybody on this earth is to enter into marriage and produce offspring.  I commend those who do and respect them greatly.  My very good middleschool buddy and his wonderful wife have a two year old is absolutely amazing.  Being a part of that has been more than satisfying.

Epoman - I am curious as to one thing that you think I have not done and maybe should?  I never said that taking drugs is what it means to live.  Seems like your preception of something (not sure if its me or "taking drugs") is a bit clouded or misunderstood, misinformed.  "Rock and roll" lifestyle does not mean needing a fix to get by and live the day.  It's ashame if that is how you see it.  How many alcoholics are out there?  Can they not show pride?  Are they incapable of being good hard working people raised with integrity?  And to answer your question about me reading your post, the answer is, Yes I did.  Have you read mine?
Title: Re: What makes it worth the effort?
Post by: Zach on January 14, 2007, 11:55:15 AM
I still don't have any idea of your "Sex drugs and Rock and Roll" lifestyle.

"I have always enjoyed my days like they might be the last and now they seem to be."
So tell us what you have done with your life.  You really haven't been too specific so far.
Title: Re: What makes it worth the effort?
Post by: meadowlandsnj on January 14, 2007, 01:12:32 PM
Mallory - thank you.  It's reassuring to know that you're not he only one.

Meadowland - contrary to your interpretation I am not and do not feel sorry for myself.  Happiness does mean different things to different people, but you can't deny that for most that is generally dictated by society.  I see it everyday.  My tone was not and also is not intended to be harsh.  People perceive things differently, alot depending on past experience.  Just because that is what you may be looking for doesn't privilege you to judge that upon me.  Not all people are the same.  In fact everyone is different just as happiness is different things to different people just as this hand of cards you were Dealt can be played many ways depending on the player.  No disrespect was or is intended.  Everyone is undoubtedly entitled to their own decisions.

Hold on a second here--I did not interpet what you said as you feeling sorry for yourself.  I just said to you that it was okay if someone felt like that. I never said that about you personally.  I didn't judge you at all. 

Donna
Title: Re: What makes it worth the effort?
Post by: Epoman on January 14, 2007, 01:19:40 PM
I still don't have any idea of your "Sex drugs and Rock and Roll" lifestyle.

"I have always enjoyed my days like they might be the last and now they seem to be."
So tell us what you have done with your life.  You really haven't been too specific so far.

Yeah I'm still waiting too.

Lost sheep - You made this long "babble" post but totally ignored our challenge to you. Please explain all the great things you have done in life at the ripe old age of 31. Also in reply to you I could care less about your sex, and rock and roll. What I have a problem with is your lifestyle you choose, which according to your own admission included drug use. Which may have caused your kidney failure in the first place, and for that I can have no sympathy for you. If you abused drugs as most people who are drug users do. You may have very well brought this whole situation upon yourself. Please don't confuse alcohol as a drug, yes it is addicting and causes many problems in our society. However you said "drugs" which I take to mean illegal drugs. To clarify my stance for you better, I do not respect ANYONE who abuses drugs or even alcohol (notice I said abuses) for that matter, because those people do not value their health or their body and to me that is ignorant and a shame. I love a good shot of Absolute Vodka once in a while, however I do not drink on a daily basis to forget my problems or use drugs to "help me live".

But back to the subject, I am not talking about you in general. I am stating at 31 years old, there is many things in life that you have NOT experienced, there are so many people who have not crossed your path. What I am saying is that you are to young to give up. You say you are a fighter but you talk the way you do about "going on to the next life" and how fulfilled you feel. But to me that is just you trying to make excuses for the current situation you are facing, you are facing death and you are trying to make excuses to welcome "death" instead of "fighting death"

I can't tell you what you should do in this life, all I can tell you is what I see by your posts on this message board. However let me ask you this.... You have mentioned "Staving children in Africa" TWICE now in your replies.....Well what have you done to help in that situation? What have you done to make this world a better place to help your fellow man? Sometimes when you help others you are REALLY helping yourself. You say you are fulfilled well then how about helping someone else get fulfilled.

I am not judging YOU, I am judging your posts. So please enlighten me with why you feel so fulfilled at 31, maybe I can learn a thing or two.

- Epoman
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 14, 2007, 02:02:52 PM
Zach

I have described what I have done with my life.  I have lived and loved for 31 years.  How specific would you like me to be.  Do you want to know about the time with my best buddy drinking beer and listening to country music karaoke in some bar in San Pedro Kay off of the coast of Belize.  Or about the time I laid my bike down in turn 10 at VIR.  Or maybe you want me to tell you about my most beloved girlfriend and the tender moments we shard togeather back in college.  Or again, maybe even more you want to know about sex with two chicks at the same time.  Or the night we did some coke and inhaled whipits and talked about nothing until the sun came up and then went out for some much needed breakfast.  You see, what I have done is live my life without any rules to the fullest capacity.  I have loved those near me and they have loved me in return.  I do not wish to be judged upon material matter.  I have been a part of a family, I chose to receive an education, I did everything I always wanted.  It is not suprising that this sort of happiness is questioned by so many.  I have known for a long time that I am gifted and special and for others t see and be effected is just another one of my doings.  Do you think I could not or have not effected anyone in a positive way and somehow influenced their life in the same positive manner?  

Come on man..."Please don't confuse alcohol as a drug, yes it is addicting and causes many problems in our society. However you said "drugs" which I take to mean illegal drugs." 
So because the government says its ok..................Tobacco is legal too.  Are those consumers not abusers?  Are they classified as people not valuing their health or their body? 

I want to know who was it that said a person must spend x number of days on this earth before they qualified as having lived a life?  How do you attach a number to that.  Jimi Hendrix died at a young age and did more for the music world than most musicians.  But he did alot of drugs to enjoy life, right, and he was ignorant and that is shamefull and we shouldn't respect him at all, right?

Oh yea, Epoman.  No response as to something I missed in life?

I'm glad you used the word "enlighten".  Buddism is a good way toward enlightenment.  Read much about it?

Title: Re: What makes it worth the effort?
Post by: Epoman on January 14, 2007, 02:41:24 PM
Zach

I have described what I have done with my life.  I have lived and loved for 31 years.  How specific would you like me to be.  Do you want to know about the time with my best buddy drinking beer and listening to country music karaoke in some bar in San Pedro Kay off of the coast of Belize.  Or about the time I laid my bike down in turn 10 at VIR.  Or maybe you want me to tell you about my most beloved girlfriend and the tender moments we shard togeather back in college.  Or again, maybe even more you want to know about sex with two chicks at the same time.  Or the night we did some coke and inhaled whipits and talked about nothing until the sun came up and then went out for some much needed breakfast.  You see, what I have done is live my life without any rules to the fullest capacity.  I have loved those near me and they have loved me in return.  I do not wish to be judged upon material matter.  I have been a part of a family, I chose to receive an education, I did everything I always wanted.  It is not suprising that this sort of happiness is questioned by so many.  I have known for a long time that I am gifted and special and for others t see and be effected is just another one of my doings.  Do you think I could not or have not effected anyone in a positive way and somehow influenced their life in the same positive manner?  

Come on man..."Please don't confuse alcohol as a drug, yes it is addicting and causes many problems in our society. However you said "drugs" which I take to mean illegal drugs." 
So because the government says its ok..................Tobacco is legal too.  Are those consumers not abusers?  Are they classified as people not valuing their health or their body? 

I want to know who was it that said a person must spend x number of days on this earth before they qualified as having lived a life?  How do you attach a number to that.  Jimi Hendrix died at a young age and did more for the music world than most musicians.  But he did alot of drugs to enjoy life, right, and he was ignorant and that is shamefull and we shouldn't respect him at all, right?

Oh yea, Epoman.  No response as to something I missed in life?

I'm glad you used the word "enlighten".  Buddism is a good way toward enlightenment.  Read much about it?



I'll say it again did you even read my reply?  ::) Here was my responce to your question:

Quote
I can't tell you what you should do in this life, all I can tell you is what I see by your posts on this message board. However let me ask you this.... You have mentioned "Staving children in Africa" TWICE now in your replies.....Well what have you done to help in that situation? What have you done to make this world a better place to help your fellow man? Sometimes when you help others you are REALLY helping yourself. You say you are fulfilled well then how about helping someone else get fulfilled.

You said:

Quote
Tobacco is legal too.  Are those consumers not abusers?  Are they classified as people not valuing their health or their body?

Yes! people who abuse smoking, as in several a day or a pack or two a day are abusers and they do not value their health or body. I thought that was automatic, I didn't think I needed to include tobacco users. I too enjoy a nice Camel Unfiltered once in a while. But I haven't had one for a couple of months.

You said:

Quote
How do you attach a number to that.  Jimi Hendrix died at a young age and did more for the music world than most musicians.  But he did a lot of drugs to enjoy life, right, and he was ignorant and that is shameful and we shouldn't respect him at all, right?

Jimi Hendrix did not use drugs, he ABUSED drugs. Imagine for a moment what he could have done for the music industry had he not ABUSED drugs. It's one thing to get high and another to abuse. Think about that for a moment.

You said:

Quote
Do you think I could not or have not effected anyone in a positive way and somehow influenced their life in the same positive manner?

Yeah I am sure the night you did "Coke" and "Inhaled whipits" had a real positive effect on their lives. Or better yet the night you had "two chicks".  ::)

Well at least you gave some examples of your wonderful fulfilling life. Which I think is shallow, the examples you gave included drinking, drug ABUSE, and sex. But what about the poor African children you keep mentioning, what have YOU done to help your fellow man? Sorry but your examples do not impress me.

You said:

Quote
I have known for a long time that I am gifted and special

Any idiot (no offense) can abuse drugs, alcohol and not follow rules as you stated, that makes you gifted and special. If that's the case then our American jails are FULL of gifted and special people like yourself.

You have not replied to my statement earlier, about drugs possibly destroying your kidneys, did they? Let me ask you this since you are so fulfilled would you consider committing suicide if you were not diagnosed with Kidney Disease? I mean after all you did EVERYTHING you wanted in life. So why bother living, you did everything you wanted and lived a very full life.

- Epoman
Title: Re: What makes it worth the effort?
Post by: Zach on January 14, 2007, 03:03:12 PM
Zach
I have described what I have done with my life.

If you believe that you have had a full life, then only you can decide what you must do in the end.  But before you act upon your decision, I would suggest you contact IHD member stauffenberg, to get his unique point of view, and see what he says about "what makes it worth the effort."

http://ihatedialysis.com/forum/index.php?action=pm;sa=send;u=223
Title: Re: What makes it worth the effort?
Post by: boxman55 on January 14, 2007, 03:14:51 PM
One of the things I consider being amazing and wonderful if you want to know is: waking up every morning knowing that today I can make a difference, no matter how big or small, I will effect someones life, and I hope in a good way, which as the say, what goes around comes around. I wouldn't want to miss the "comes around"
Boxman55
Title: Re: What makes it worth the effort?
Post by: meadowlandsnj on January 14, 2007, 03:56:07 PM
Zach

I want to know who was it that said a person must spend x number of days on this earth before they qualified as having lived a life?  How do you attach a number to that.  Jimi Hendrix died at a young age and did more for the music world than most musicians.  But he did alot of drugs to enjoy life, right, and he was ignorant and that is shamefull and we shouldn't respect him at all, right?


Lets talk about musicians who abused drugs and died far too young.
http://en.wikipedia.org/wiki/List_of_artists_who_died_of_drug-related_causes
I don't they did drugs to enjoy life--people do drugs to try to replace something missing in their life.  To escape life.  Not one person I know who ever abused drugs did it to get more enjoyment out of life.  I grew up with people who abused drugs.  Can you imagine what someone like Jimi Hendrix could have accomplished if he didn't die?  Jim Morrison?  Janis Joplin?  We'll never know because they were gone too young.  To me there's nothing heroic about dying choking in your own vomit because you were too high to help yourself.  Jimi Hendrix was just another junkie who overdosed and died in his own vomit. How many non famous people died exactly the same way as him? That's the ugly truth about it.  Someone like him had a gift and they threw it all away for the needle.  Ever listen to the Neil Young song the needle and the damage done?
If someone chooses to to drugs, hey it's a free country go ahead.  It's your life.  Just don't expect me to respect you.  I respect people who deserve respect.

Donna
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 14, 2007, 04:15:53 PM
Wow Epoman!  I'm not sure where to begin.  You and I are of different breeds.  I for sure do not pass judgment on people as you seem to be so apt in doing.  No respect for users of anything harmful to the body.  Man thats harsh.  I mean there are alot of people with certain types of sicknesses that need help.  What they don't need are people such as yourself who at the drop of a hat are down on them.  What about the people with severe depression who get hooked on prescription meds?  No respect for them either?  I respect all life.  After all, we all want the same thing.  Happiness.  *Yes I have read your replies and I am still dissappointed.  I would expect a more inspirational responses rather than the "I know everything because this is my website" types you have dedicated.  You are not better than anybody else, including tobacco addiction.  In order for people to respect you, you must share in the same respect.

YOU SAID "Jimi Hendrix did not use drugs, he ABUSED drugs. Imagine for a moment what he could have done for the music industry had he not ABUSED drugs. It's one thing to get high and another to abuse. Think about that for a moment."

I did think about it.  I don't believe he would have had the same influence without the drugs as he did with them.  Just the same as I don't believe he would have had the same influence had he not been drafted to the war.  See our life experiences are what make us who we are.  You mean to tell me that without using or "abusing" drugs that Jimi Hendrix would be the Jimi Hendrix we know?  Also, who is it that determines the line between using and abusing and when did I get admitted into either one?

YOU SAID "Yeah I am sure the night you did "Coke" and "Inhaled whipits" had a real positive effect on their lives. Or better yet the night you had "two chicks".  
Well at least you gave some examples of your wonderful fulfilling life. Which I think is shallow, the examples you gave included drinking, drug ABUSE, and sex. But what about the poor African children you keep mentioning, what have YOU done to help your fellow man? Sorry but your examples do not impress me."

You know one positive thing that came of that night.  A bond between friends.  Mutual respect for one another.  Sure we could have gone to a movie or played mini golf or went bowling or something and we do do those things, but this night was more than that.  We still laugh about it to this day.  And the two girls....whats wrong with that?  Everybody likes eachother.  Enough for it to happen more than once.  All you see in my post is what you want to see.  Read between some of the lines and you might have a better understanding of who I am.  I am not here to impress anyone.  For the African people and those similar...I eat all the food on my plate and have always been grateful for what was mine.  When I travel to a poor country I always bring something to give to the people.  It's amazing what baseball cards are worth in Cuba!

YOU SAID  "Let me ask you this since you are so fulfilled would you consider committing suicide if you were not diagnosed with Kidney Disease? I mean after all you did EVERYTHING you wanted in life. So why bother living, you did everything you wanted and lived a very full life."

I SAY.  Thats the most ridiculous remark you have made!!!  So ridiculous I am not even justifying it with a response.


Title: Re: What makes it worth the effort?
Post by: Zach on January 14, 2007, 04:30:02 PM
When I travel to a poor country I always bring something to give to the people.  It's amazing what baseball cards are worth in Cuba!

I gave lollipops to the children in Shanghai.  Now my life is all that it can be.
Title: Re: What makes it worth the effort?
Post by: terry-upstate-ny on January 14, 2007, 05:14:18 PM
Dear Lost Sheep, You say that you don't want to be herded.  You probably feel forced into dialysis and that your only choice is to refuse treatment, which is like choosing eventual suicide.  You say that you have nothing further to live for. This all sounds like you are experiencing Depression, and you should speak with your caregivers about this.  Many people feel better after therapy. There are some antidepressant medications can be used to help you feel better. :D
Terry
Title: Re: What makes it worth the effort?
Post by: Rerun on January 14, 2007, 07:36:53 PM
Lost Sheep,

I don't agree with your lifestyle!
I do agree with your decision to deny dialysis treatment.  It is not free and it is definitely not easy.  So, I don't really think you could handle it.  They don't allow alcohol or illegal drugs on the machine and you probably won't feel like staying up all night partying.  So, there are 2 ways you can do this.  Don't even get the fistula created or the lines in your neck.  It will be a long death because your kidneys have to slowly shut down.  You can speed up the process by drugs and alcohol if you want.  The second option is to go ahead and get the fistula created or whatever option you choose and just try dialysis for a year.  After a year your native kidneys will have most likely pooped out completely.  Then if you stop dialysis it is a LOT faster.  AND you can just drink a few orange/banana smoothies and you will be dead in no time. 

In that year you could go to church to prepare for the next life.

I am serious.  Dialysis is for those who want to live a while longer.  If you don't you will die.  Dialysis is a luxury.  If you lived in north Africa you would not even have an option.

Do what you want.
Title: Re: What makes it worth the effort?
Post by: melshell on January 14, 2007, 09:39:32 PM
I'm going out on a limb here, but after reading the thread, I understand and agree with points made on both sides. I've had chronic kidney disease for 15 years, and only recently reached ESRD which necessitated dialysis. I consider myself a very centered person. Not unlike anyone else, I have endured my fair share of heartache, and loss in the "hard knock" school of life. Thankfully, at some point early on, (and by early on I mean my twenties-or there about), I discovered the awe and beauty of the world, and that every day I was allowed to awaken, I had the opportunity to make as much or as little of it as I desired, and I began to count that a privilege. If you had asked me before my kidneys crashed, whether I'd felt like I'd lived my life fully, or accomplished all that I hoped to accomplish, or if I was ready to go, I would've answered in a heartbeat, YES!! "I am ready to go!!" Not because I'd seen it all, or done it all, but because I felt like I would have lived the life that was intended. No truer statement was ever made than that we are all different, and therefore what we hope to accomplish with this life is different. I know for me, it's important for me to love fully the people that are around me, and be loved by them. It's important for me to respect others and to be respected amongst my peers and the people who look up to me and depend on me. Without getting too lengthy, it is also important for me to honor those that have gone on before me, and to leave something of myself for those to follow. I don't believe there's some magic age you live to that entitles you, or anyone else to say with any certainty "well, they lived a full life." I believe that whatever age you are when you leave this place, you have no one to blame but yourself, if you haven't lived a full life. There have been times since I began dialysis, that I have asked myself "why do this?", "Is it worth it?", and I've only been on dialysis for a little less than two months...I think we all do. I DON'T, however, feel like I was desperately grasping for straws when the time came, or that I was herded like a goat into beginning dialysis because I was too young to die, or that I'd left something undone that I needed to do! I was perfectly satisfied with my life, and had I been diagnosed with terminal Cancer, or been killed in a car accident, I would have been at peace...the difference is, I had a choice. I have been given the opportunity, via a machine, to continue the journey! The BEST part of life to me is living!! Being tied to a machine 7 nights a week SUCKS!! Surely it does!! But, you can view it as a means to an end, as many people view life, or you can chalk it up to another degree from the school of hard knocks, and anticipate how you will grow as a person through yet another experience. We are the sum of all of our experiences, perhaps there is a lesson that can only be learned by you going through  dialysis? I could've made better choices knowing that my kidneys would eventually fail, but if I had it to do all over again, I probably wouldn't. Yes, the choices I made have gotten me where I'm at, but they have also made me who I am. As for whether or not it's worth it, I feel sure there will be times ahead that I will again question myself about whether it is infact worth all the effort, but I am very thankful for the choice. Even people that aren't on dialysis suffer disappointments, and become discouraged...Having the choice, I will always chose life, HOWEVER it is that I am allowed to live it, and I will trust in, and have faith that when it is my time, I will be called, and I will be ready to go.

A friend sent me this today, I thought it was worth adding:

Disappointment is an emotional response to some failed expectation or desire.  Discouragement is losing motivation for something in life that brings us fulfillment and purpose.  I guess the key difference is that we can choose whether we are going to let disappointments plunge us into becoming discouraged.

Title: Re: What makes it worth the effort?
Post by: kitkatz on January 14, 2007, 09:43:24 PM
I do not even understand the argument going on here in this thread. If a thirty-one year old person has decided that this is it, there is not point in living anymore, let them go!  Don't tell them there are so many other people who are the same age and feel cheated because life handed them dialysis and they are trapped with a machine now for the rest of their life or until a transplant comes along. Don't tell them about the nineteen year old who wants a child so bad she will get pregnant while on dialysis, thereby endangering her life. Don't tell them about the forty-four year old who still teaches special education children every day and goes to dialysis three days a week because she wants to continue living and contributing.  Don't tell them about the eighteen year old going in for transplant this week from a generous donor after being on dialysis for three years; or about her mother who spent countless hours on the net looking for a healthy viable donor.  Don't tell hem about the guy who developed this website for dialysis patients, where patients can say whatever is on their minds;who spend countless hours on his websites with new ideas. Don't tell them about the plans that were ruined, the lives that were changed, and the decisions that were made so that the person on dialysis could live and love for many years to come.  Don't tell them it is okay to give up, tell them it is okay to live.

Title: Re: What makes it worth the effort?
Post by: okarol on January 14, 2007, 11:11:29 PM
   
    ...Amen, dear Kit.
Title: Re: What makes it worth the effort?
Post by: Epoman on January 15, 2007, 12:25:04 AM
Wow Epoman!  I'm not sure where to begin.  You and I are of different breeds.  I for sure do not pass judgment on people as you seem to be so apt in doing.  No respect for users of anything harmful to the body.  Man thats harsh.  I mean there are alot of people with certain types of sicknesses that need help.  What they don't need are people such as yourself who at the drop of a hat are down on them.  What about the people with severe depression who get hooked on prescription meds?  No respect for them either?  I respect all life.  After all, we all want the same thing.  Happiness.  *Yes I have read your replies and I am still dissappointed.  I would expect a more inspirational responses rather than the "I know everything because this is my website" types you have dedicated.  You are not better than anybody else, including tobacco addiction.  In order for people to respect you, you must share in the same respect.

YOU SAID "Jimi Hendrix did not use drugs, he ABUSED drugs. Imagine for a moment what he could have done for the music industry had he not ABUSED drugs. It's one thing to get high and another to abuse. Think about that for a moment."

I did think about it.  I don't believe he would have had the same influence without the drugs as he did with them.  Just the same as I don't believe he would have had the same influence had he not been drafted to the war.  See our life experiences are what make us who we are.  You mean to tell me that without using or "abusing" drugs that Jimi Hendrix would be the Jimi Hendrix we know?  Also, who is it that determines the line between using and abusing and when did I get admitted into either one?

YOU SAID "Yeah I am sure the night you did "Coke" and "Inhaled whipits" had a real positive effect on their lives. Or better yet the night you had "two chicks".  
Well at least you gave some examples of your wonderful fulfilling life. Which I think is shallow, the examples you gave included drinking, drug ABUSE, and sex. But what about the poor African children you keep mentioning, what have YOU done to help your fellow man? Sorry but your examples do not impress me."

You know one positive thing that came of that night.  A bond between friends.  Mutual respect for one another.  Sure we could have gone to a movie or played mini golf or went bowling or something and we do do those things, but this night was more than that.  We still laugh about it to this day.  And the two girls....whats wrong with that?  Everybody likes eachother.  Enough for it to happen more than once.  All you see in my post is what you want to see.  Read between some of the lines and you might have a better understanding of who I am.  I am not here to impress anyone.  For the African people and those similar...I eat all the food on my plate and have always been grateful for what was mine.  When I travel to a poor country I always bring something to give to the people.  It's amazing what baseball cards are worth in Cuba!

YOU SAID  "Let me ask you this since you are so fulfilled would you consider committing suicide if you were not diagnosed with Kidney Disease? I mean after all you did EVERYTHING you wanted in life. So why bother living, you did everything you wanted and lived a very full life."

I SAY.  Thats the most ridiculous remark you have made!!!  So ridiculous I am not even justifying it with a response.


Hmmm now lets see where shall I begin?

You said:

Quote
I respect all life.

Hmmm OK, to bad you don't respect yourself. If you did you wouldn't have used "Coke" and inhaled "Whip-its".

You said:

Quote
I would expect a more inspirational responses rather than the "I know everything because this is my website" types you have dedicated.

Even if this wasn't my website I would still tell you how I feel and that would be my right. Being the owner isn't relevant, I am just stating my opinion. Do I not have a right to my opinion?

You said:

Quote
You are not better than anybody else, including tobacco addiction.  In order for people to respect you, you must share in the same respect.

Never said I was better than anyone else. I just have never used drugs, or abused alcohol. You still haven't answered my question. What caused your kidney disease? I bet it was the drugs, if you did "COKE" and "WHIPITS" then I am sure you did other narcotics. You abused your body and DID NOT CARE about the consequences and now you come to a dialysis board for "Inspiration" as you said "I would expect a more inspirational responses" You won't get any from me. I have asked you this questions twice now and you have ignored it, so that tells me your drug use did cause your kidney disease.

I SAID: "Let me ask you this since you are so fulfilled would you consider committing suicide if you were not diagnosed with Kidney Disease? I mean after all you did EVERYTHING you wanted in life. So why bother living, you did everything you wanted and lived a very full life."

You SAID:

Quote
Thats the most ridiculous remark you have made!!!  So ridiculous I am not even justifying it with a response.

Oh you're right you wouldn't commit suicide because you would still be abusing drugs and living without rules (your words).

What will make you happy "lost sheep" for me to kiss your ass and tell you how wonderful I think you are and tell you abusing drugs is fine and you are a fine young man and you have done so much good in your life because you only thought of yourself? And how much it sucks that this has happened to you. And you NEVER did anything in life to deserve this.

Well that isn't going to happen from me.

- Epoman


Title: Re: What makes it worth the effort?
Post by: glitter on January 15, 2007, 08:25:16 AM
just the fact that you posted here, among strangers,tells a story of someone who is really looking for a reason to live.

Why else would you post? (It wasn't really for our opinions....)

My husband is a big tough guy (he is the dialysis one) this brought him to his knees for awhile,..... then he decided to be a

man, it takes courage to live too.

What if...............you leave something undone that you have not thought of yet?

Do you want your legacy to include pussing out at 31? Just my opinion -which isn't relevent in your scheme of things I reckon.

Title: Re: What makes it worth the effort?
Post by: Sluff on January 15, 2007, 11:37:20 AM
Hey Lost sheep I'll keep this simple.

It is most definately your choice. It seems the real question is why did you join IHD? It seems you made your decision already so are you bringing this to our attention for a reason?

If you made the decision to end it than so be it, but I don't want to lose a friend so I'm going to ignore this thread, before we become friends.
Title: Re: What makes it worth the effort?
Post by: RichardMEL on January 15, 2007, 03:56:17 PM
This is an interesting topic that raises so many complex issues such as our own mortality, our right to chose our destiny, quality of life vs. qantity of life, coping with dialysis, depression... and so on (to name a few).

It is interesting to read Lost Sheep's comments given this is a mostly "positive" forum, in terms of coping with and living with dialysis. I am sure all of us, at one time or another have had similar thoughts to Lost. I think the key is how we respond to these thoughts that is key.

I am only 5 years older than Lost, and have only been doing dialysis for 6 months next week, though I knew my fate over 13 years ago. At least by fate I mean that I knew what was in store in the future. So I feel about as new to dialysis and the life changes it produces as Lost is.

Unlike Lost, I don't think I've "done it all" yet. I am not even certain I could say that I had done everything that I wanted to. I tried to cram a lot in the last 13 years, but one of the things I hold on to in life is that I do NOT know what is around the corner - good or bad. I may meet the woman of my dreams (heck, I may have already met her?!)... I may experience a wonder/surprise I had not contemplated... I may get abducted by aliens (if they do probe me I hope they fix my kidneys too! That's gotta be worth a few probes!). For me, one of the good things about life is that hopefully it is NOT predictable.

Having said that, I certainly respect Lost's feelings on the matter.. but I wonder in the short time he has had to deal with the reality of dialysis and the life changes that brings that what he is really saying is that he feels the new restrictions and changes in lifestyle aren't worth it?! Yes, it can be a huge shock, specially if you are not prepared for it, to start dialysis.. but that doesn't mean life is over.

I feel perhaps Lost should be talking with his unit's Social Worker or a Counsellor about these feelings. Sure, if you feel "content" with what 31 years of life has given you, then by all means pull the plug (it seems to be what you're suggesting, but then again if you were REALLY content with things and ready to "go" then I doubt you would be posting this topic here with what essentially, to me anyway, is a cry for help). I do not mean this in an offensive way or anything.. this is just how I read the post.

I have thought about things like this myself. My late mother who passed away in March last year decided to end all her treatments given her quality if life had become so low (in her view) that she put an end to it with dignity and a REAL contentment with all she had done. She was 66 and was battling a horrid Pneumonia and lung disease caused by DVT that essentially left her in a hospital bed with 24/7 oxygen mask and antibiotics so strong that they were destroying her liver and kidneys. That kind of thing makes Dialysis seem like a daily or 3x/weekly workout.

Yes, being on dialysis has caused lifestyle changes that i find difficult at times to deal with. It really cuts down on travel options (though others in here have proved that it can be done!) and the dietry and fluid restrictions are a pain (I am dreading this afternoon's weigh in! :) ) and the meds and tireness and so on can be a real drag (no I am not suggesting anyone go over to the Sex thread! :D ).

But you know, Epo is right. I have had bad eyesight all my life as well. I can't drive, I could never play ball sports I wanted to as a kid and I was bullied for years. In a way that condition places more burdens on me than dialysis does. You know though, I can see enough to apprieciate a rainbow, or my beautiful cat, or an even more beautiful lady, a sunset, flowers, etc. I can hear, smell, touch and I can walk even if I can't drive (great exercise :) ). Sometimes I think of those who have less ability than I for whatever reasons

I also think about how dialysis technology helps me while waiting for a transplant to restore life to some kind of normality (I hope!). 100 years ago people with kidney failure would have faded away and died in an unpleasant way. Yet now we have people here who have been doing dialysis 30+ years! How many life experiences have those folks had that they would not have had? And they can continue to contribute to their families and their community.

I remember some years ago I went and saw a classical music concert conducted by James DePreist, who at the time was on dialysis (I believe he has since had a transplant). This guy travelled the world doing his art and the only difference I saw from him on stage is that he sat to conduct (which may or may not have been related to his kidney disease - though it would be pretty tiring for most people to stand for 2+ hours in front of an orchestra and wave the baton!). This is one guy who inspired me.

Last I must ask Lost, do you have no hope (or want) for a transplant which may give you back much of what you seem to be missing so much now as you start dialysis? It's not like it's a death sentence and you could wind up with a transplant and kiss dialysis goodbye! Several of our own members have recently "had the call" and we wish them all the best with their transplants!

The other thing is that I am not sure what form of dialysis you are doing, but there are options to suit different kinds of lifestyles - PD, Home Haemo, unit Haemo, etc... perhaps you're not on the right option for you and you could find something to better fit in with your lifestyle?

I don't think you should be so black and white about this situation when you're really only a "dialysis baby" - it takes time to get used to, that is for sure, and to find what works for you (and I am still nutting through that myself).. I also think this whole thread is you asking for help to cope with the changes dialysis brings. Well, we're just one method of support to give some of that help. Others will be your doctor, social worker, counsellor etc.

All the best!
Title: Re: What makes it worth the effort?
Post by: shay_pcb on January 15, 2007, 04:04:17 PM
I am relatively new to this "community" and I have been wondering.  Is this how life is meant to be lived?  I suppose if you have dependants there are reasons to "buy" time ...but if you don't?  Isn't it all just for nothing?  It's been 2 months now since I acquired the ability to see life like so many others never have a chance.  When you look death in the eyes your preception is much different.  Living people can not and would not understand as we do.  What is so wrong with leaving this life which has been lived to the absolute fullest and going on to the next?  How many people live their lives to the fullest?  How many live live like herded goats?  Can you say, "I have done all I wanted to do in this life."  Living off of some machine and waiting for a possible transplant and the meds and all else that comes?  Is this life style for me, or you?  It must be difficult for living loved-ones, but they too will move on to another life soon enough.  Do you live for them?  I say no, I have always lived for living, for the gift of life, for myself, not someone else.  To live is to be free, not managing, or bearing it, or surviving.
I often wonder the same thing. I wonder if I was supposed to die and that medical science is keeping me alive longer than was meant. I have had so many problems...it just makes me think that I wasn't meant to be alive this long....
Title: Re: What makes it worth the effort?
Post by: Epoman on January 15, 2007, 04:22:06 PM
I am relatively new to this "community" and I have been wondering.  Is this how life is meant to be lived?  I suppose if you have dependants there are reasons to "buy" time ...but if you don't?  Isn't it all just for nothing?  It's been 2 months now since I acquired the ability to see life like so many others never have a chance.  When you look death in the eyes your preception is much different.  Living people can not and would not understand as we do.  What is so wrong with leaving this life which has been lived to the absolute fullest and going on to the next?  How many people live their lives to the fullest?  How many live live like herded goats?  Can you say, "I have done all I wanted to do in this life."  Living off of some machine and waiting for a possible transplant and the meds and all else that comes?  Is this life style for me, or you?  It must be difficult for living loved-ones, but they too will move on to another life soon enough.  Do you live for them?  I say no, I have always lived for living, for the gift of life, for myself, not someone else.  To live is to be free, not managing, or bearing it, or surviving.
I often wonder the same thing. I wonder if I was supposed to die and that medical science is keeping me alive longer than was meant. I have had so many problems...it just makes me think that I wasn't meant to be alive this long....

NOPE shay, when it's your time it's your time. I am not sure of your religious beliefs however I personally believe when it's your time, there is nothing medical science can do to stop it. This is just my personal belief. I have had wayyyy more medical problems than you shay and "I am still kicking deaths ass", but when the big guys calls me home, then there is nothing I can do to stop it.

- Epoman
Title: Re: What makes it worth the effort?
Post by: shay_pcb on January 15, 2007, 04:28:28 PM
I don't know about that, Epoman. I haven't posted ALL of my medical problems. Plus, you are older than me, so you've had more time to get more medical problems.  >:D  ;) What about when you were my age??
Title: Re: What makes it worth the effort?
Post by: jbeany on January 15, 2007, 05:47:53 PM
I often wonder the same thing. I wonder if I was supposed to die and that medical science is keeping me alive longer than was meant. I have had so many problems...it just makes me think that I wasn't meant to be alive this long....

If we weren't meant to be alive this long, shay, we would have been hit by a bus by now.  Medical problems be damned - death is going to have come track me down.  I'm not going quietly!
Title: Re: What makes it worth the effort?
Post by: Epoman on January 15, 2007, 06:06:47 PM
I don't know about that, Epoman. I haven't posted ALL of my medical problems. Plus, you are older than me, so you've had more time to get more medical problems.  >:D  ;) What about when you were my age??

Well I'll give you that, I am older than you.
Title: Re: What makes it worth the effort?
Post by: shay_pcb on January 15, 2007, 06:12:20 PM
I don't know about that, Epoman. I haven't posted ALL of my medical problems. Plus, you are older than me, so you've had more time to get more medical problems.  >:D  ;) What about when you were my age??

Well I'll give you that, I am older than you.
So what all did you have when you were my age, if you don't mind me asking?  ;D
Title: Re: What makes it worth the effort?
Post by: Epoman on January 15, 2007, 06:14:52 PM
I don't know about that, Epoman. I haven't posted ALL of my medical problems. Plus, you are older than me, so you've had more time to get more medical problems.  >:D  ;) What about when you were my age??

Well I'll give you that, I am older than you.
So what all did you have when you were my age, if you don't mind me asking?  ;D

Umm...Kidney Disease. I started dialysis at 20 and have been on for 13+ years. The doctors told me I should have been on dialysis 6 to 8 years prior, I should have died. They could not believe my.....WAIT just read my "Intro".  ;)

- Epoman
Title: Re: What makes it worth the effort?
Post by: RichardMEL on January 16, 2007, 08:03:24 AM
Shay, I don't know how old you are, and to me it doesn't really matter... It reads from your post that you feel overwhealmed with all of the issues you have to deal with, and no I do not know them all of course, kidney disease is enough for anyone to deal with let alone whatever else is going on for you.

And I feel for you. Sometimes I read some intros here and I think "Oh My God how can they cope with X,Y and Z?" and I feel so minor with *just* kidney failure and crappy eyesight?!

But at the same time I think that I then realise that these people, and you too Shay, are the really inspirational ones! So much to deal with and you keep on going, and there IS a reason to keep on going.. of that I am pretty sure!

I do not know what that reason may be. It may be different for everuone. Perhaps Epo's reason, for example, was to create this community and to unite all of us in a support network? Perhaps yours is to meet someone truly amazing to you (if you haven't already.. sorry I have not read your intro!)... or some other thing.

I tend to agree with Epo.. when your number is up... your number is up.. before then.. get on with it. That's why I flew to the US the week after 9/11.... And that's why I go to dialysis 3x/week and try to live my life as best I can.

chin up Shay... *hugs offered*
Title: Re: What makes it worth the effort?
Post by: RichardMEL on January 16, 2007, 08:14:55 AM
I have just gone back and re-read Lost Sheep's various posts.

I wonder Lost, if you did get a transplant and/or a donation from family, would you go back (or continue???) to use drugs (of whichever sort?) and lead the same sort of semi-hedonistic lifestyle that you have aluded to (finally!) in your posts?

If the answer is yes, I would tend to recommend against transplantation.

That I guess comes across as very rude and judgemental but frankly if I was going to be a donor I would not want my vital organ going to someone who would do their best to screw it up as quickly as possible. That idea makes me sad.

I also wonder why you have felt the need to indulge in the lifestyle you have. I do not try to judge because I definitely believe everyone is entitled to live as they wish and do what they want, as long as it doesn't affect others... but seems to me the main use of drugs, booze, etc is to escape the reality of the life you are in.

You seem very certain and confident in your assertion (bordering on arrogant in some respects) that you have done all you wanted in life. I thought about that during my dialysis session today (it seemed appropriate :) ) and I came to the conclusion that that seems a pretty naive thing to say and think. HOW CAN YOU KNOW what there is to life fully???? Heck I don't know the answer to that. I doubt Plato or other philosophers do/did either. I tend to think life as much about the experience of *living* including the little every day things (and the big) as well as the PEOPLE you affect and affect you... who you interact with.. from that beloved girlfriend in college to the guy you buy a hot dog from.

Finally you accuse others of being judgemental yet you yourself made some sweeping generalisations about those in North America (and elsewhere) and the way they lead their lives. Now don't get me wrong, I agree with you if you mean the generalisation of those people that think a great day is sitting in front of the box watching Jerry Springer... but that opinion is just as judgemental as anyone here who says "you did drugs. you are bad mkay!"...

Anyway Lost, I still contend that underneath all the bluster you're really reaching out.. either that or just seeking attention with this whole thread. Guess what pal.. it worked!! :D Well done!!

So surely it's worth if it you can get attention from a bunch of judgemental people such as us to respond to your comments... think some more you just might find a few more reasons to make it worth the effort.

Peace.
Title: Re: What makes it worth the effort?
Post by: nextnoel on January 16, 2007, 12:38:57 PM
I did everything I always wanted.  It is not suprising that this sort of happiness is questioned by so many.  

I think anyone who has done everything he or she always wanted is lacking in imagination; maybe you did everything you wanted, but couldn't imagine how much more there is.  And I think the reason ". . . that this sort of happiness is questioned by so many" is that so many don't see what you describe as true happiness.  It's a little like someone who's never seen color TV thinking black & white TV is the ultimate! 

That said, your posts are interesting, and I expect if you continue living this life, many people will be able to learn a lot from you!
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 17, 2007, 01:56:29 PM
If I can't eat, drink, and have sex when I want, then it's basically over.  There are no famous philosophers that have documented the pourpose of life because there is no one pourpose of life.  It's a ride for you to enjoy.  You get on.  You get off.  And when the ride is over you get on it again.  The purpose is to have the best time you can.  I have been lucky enough to ride for as long as I have.  It has been most exciting!  I don't have to fight for my life, changing everything about myself.  That, to me, is sad.   I don't mean it to be sad for anyone who chooses to fight.  For some it may be a purpose.  Not everyone that is fighting life threatening situations has "something else to do, something else to live for."  That, like many other phrases, are made by those who care about an individual.  How many people with significant time invested in their "fight" can tell you what their other reason for being here is?  If you have read this thread than you will know I am not referring to those with families and such.  IF I were a grizzly bear, had a grizzly bear family,  and had been shot by a hunter then I most certainly would live for as long as I could.  Or at least tried to kill that s.o.b.  The same bear before he made bear cubs walks into the same hunter in the forest and the hunter shoots him.  The bear would try to find some honey or a comfortable place to rest.

I have not been very impressed with the majority of responses although there were a couple that it seems the writer took some time with before responding some form of B.S.  mostly about themselves and not the subject at hand.  Epoman, I am most disappointed in you.  For someone with enough (whatever it is) to start and operate a site such as this one, I really thought you could have been more....interesting?  One of the last posts you made  you said, "I personally believe when it's your time, there is nothing medical science can do to stop it."  This statement goes to show your lack of preception of life.  Understandably distorted since living with all the problems that you have lived with since a tender age.  Medical science can keep people alive for a very long time but is living in a coma on a breathing machine life?  Oh yea, it must be, it just cannot be time yet.  To have peace with life is not something to be discouraged.
Title: Re: What makes it worth the effort?
Post by: meadowlandsnj on January 17, 2007, 02:15:44 PM


I have not been very impressed with the majority of responses although there were a couple that it seems the writer took some time with before responding some form of B.S.  mostly about themselves and not the subject at hand.  Epoman, I am most disappointed in you.  For someone with enough (whatever it is) to start and operate a site such as this one, I really thought you could have been more....interesting?  One of the last posts you made  you said, "I personally believe when it's your time, there is nothing medical science can do to stop it."  This statement goes to show your lack of preception of life.  Understandably distorted since living with all the problems that you have lived with since a tender age.  Medical science can keep people alive for a very long time but is living in a coma on a breathing machine life?  Oh yea, it must be, it just cannot be time yet.  To have peace with life is not something to be discouraged.

I hope you can find whatever you were looking for.  I really don't know what else to say after reading this passage. 

Donna
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 17, 2007, 02:36:40 PM
The point is that if you know where to look it can be found (I did).  Saying nothing is better than some of the crap I have read anyway.  Thank you.
Title: Re: What makes it worth the effort?
Post by: Epoman on January 17, 2007, 03:38:16 PM
If I can't eat, drink, and have sex when I want, then it's basically over.  There are no famous philosophers that have documented the pourpose of life because there is no one pourpose of life.  It's a ride for you to enjoy.  You get on.  You get off.  And when the ride is over you get on it again.  The purpose is to have the best time you can.  I have been lucky enough to ride for as long as I have.  It has been most exciting!  I don't have to fight for my life, changing everything about myself.  That, to me, is sad.   I don't mean it to be sad for anyone who chooses to fight.  For some it may be a purpose.  Not everyone that is fighting life threatening situations has "something else to do, something else to live for."  That, like many other phrases, are made by those who care about an individual.  How many people with significant time invested in their "fight" can tell you what their other reason for being here is?  If you have read this thread than you will know I am not referring to those with families and such.  IF I were a grizzly bear, had a grizzly bear family,  and had been shot by a hunter then I most certainly would live for as long as I could.  Or at least tried to kill that s.o.b.  The same bear before he made bear cubs walks into the same hunter in the forest and the hunter shoots him.  The bear would try to find some honey or a comfortable place to rest.

I have not been very impressed with the majority of responses although there were a couple that it seems the writer took some time with before responding some form of B.S.  mostly about themselves and not the subject at hand.  Epoman, I am most disappointed in you.  For someone with enough (whatever it is) to start and operate a site such as this one, I really thought you could have been more....interesting?  One of the last posts you made  you said, "I personally believe when it's your time, there is nothing medical science can do to stop it."  This statement goes to show your lack of preception of life.  Understandably distorted since living with all the problems that you have lived with since a tender age.  Medical science can keep people alive for a very long time but is living in a coma on a breathing machine life?  Oh yea, it must be, it just cannot be time yet.  To have peace with life is not something to be discouraged.

"If I can't eat, drink, and have sex when I want, then it's basically over."

WOW, I am so glad I was raised to not be so shallow. To you "life" is eating, drinking, and having sex. What about the "coke" and "whipits"? ::)

"There are no famous philosophers that have documented the pourpose of life because there is no one pourpose of life.  It's a ride for you to enjoy.  You get on.  You get off.  And when the ride is over you get on it again."

Well that sure explains a lot of why you feel the way you do. I don't want to turn this in to a religious debate, so good luck in your next life.  ::)

Epoman, I am most disappointed in you.  For someone with enough (whatever it is) to start and operate a site such as this one, I really thought you could have been more....interesting?

You have no idea how much that comment hurts me, I soooo want your approval. Please, please like me. I'll try not to disappoint you anymore....PLEASE.........  ::) Oh I know, let me do a line of "Coke" maybe then I will get more interesting, and I will fit in more with someone like you. ROCK ON DUDE!

- Epoman
Title: Re: What makes it worth the effort?
Post by: BigSky on January 17, 2007, 05:32:54 PM
I have not been very impressed with the majority of responses although there were a couple that it seems the writer took some time with before responding some form of B.S.  mostly about themselves and not the subject at hand.  Epoman, I am most disappointed in you.  For someone with enough (whatever it is) to start and operate a site such as this one, I really thought you could have been more....interesting? 

Really, maybe you should consider the  condescending bs you have posted. :o
Title: Re: What makes it worth the effort?
Post by: Zach on January 17, 2007, 05:47:43 PM
It's better to wear out than rust out.
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 18, 2007, 01:39:46 AM
To keep going back and forth is probably more excitement than I can handle without kidney function.  Epoman, Your remarks are very much like a child's.  Did the loss of your kidneys at a young age prevent you from growing up and having the childhood so many are fortunate to have.  I'm sorry man, I guess you're making the best of it though!
Title: Re: What makes it worth the effort?
Post by: Joe Paul on January 18, 2007, 02:13:24 AM
Lost sheep, why are you so full of hate  ???
Title: Re: What makes it worth the effort?
Post by: Epoman on January 18, 2007, 02:24:27 AM
To keep going back and forth is probably more excitement than I can handle without kidney function.  Epoman, Your remarks are very much like a child's.  Did the loss of your kidneys at a young age prevent you from growing up and having the childhood so many are fortunate to have.  I'm sorry man, I guess you're making the best of it though!

Oh yeah sorry, I forgot you are a quitter. I know you can't handle situations real well unless it involves cocaine, tell you what, go do a line and maybe you'll feel better. Then you can reflect on your wonderful fulling life.

"I guess you're making the best of it though!" - Yes I am, unlike you who comes on this site and complains that their life is over because you can no longer eat and drink what you want. ::) Shall I quote you? "If I can't eat, drink, and have sex when I want, then it's basically over." How dare you come on this site and insult people who have been "fighting" this disease for years or even decades.

- Epoman
Title: Re: What makes it worth the effort?
Post by: AlasdairUK on January 18, 2007, 03:52:50 AM
I remember when I re-started hemo and I thought I would not be able to live a full life and was worried as to how I would adapt. It takes a while to fully understand how dialysis works and how the body reacts to the treatment.

I would like to believe I have lived a full life, but have not done everything I want to do in life. There is always more to do and enjoy, even if it is just to sit done with a mate watch a game and have a beer. There is no reason that you can not live a full and proactive life on dialysis. You mentioned you are currently not working due to health problems. What else do you have besides kidney failure?  Maybe you need to find more purpose in your life?

You need to come to terms with your illness and accept it and figure out how to incorporate it into your life instead of letting it stop your life. I started dialysis when I was in pediatrics and have seen many people die because they where not strong enough to cope. Many people do live a full life on dialysis, but it is up to you if you want to put the effort in. If you do, you need to find things that make you want to fight. You need to have goals that you want to achieve. ie travel, get a job, improve your health, learn a language. You need to have friends, family that you want to live for. If you don't then what do we live for ? What motivates any of us ?

There are many caring people at IHD that will help you get through the first few months before you adapt and start to live a full life. I realise that it is a tough time and there is always resistance to change, especially the unknown.

PS. There isn't anything stopping you from still having sex, alcohol and rock'n roll
Title: Re: What makes it worth the effort?
Post by: kitkatz on January 18, 2007, 04:39:31 PM
I have come to believe you are here just to stir things up around here. Let's have a little fun with the dialysis aptients and tell them life is over for me.  Well boo hoo!  I have had it with this thread.  I find your attitude insulting and degrading to all of the people I know and LIKE on this board.  From here on out I am done with this thread.  You do not really want our help or opinions, you just want to stir up the pot.  So go stir it up somewhere else.
Title: Re: What makes it worth the effort?
Post by: shay_pcb on January 18, 2007, 05:05:40 PM
I have come to believe you are here just to stir things up around here. Let's have a little fun with the dialysis aptients and tell them life is over for me.  Well boo hoo!  I have had it with this thread.  I find your attitude insulting and degrading to all of the people I know and LIKE on this board.  From here on out I am done with this thread.  You do not really want our help or opinions, you just want to stir up the pot.  So go stir it up somewhere else.
I second that!!  :clap;
Title: Re: What makes it worth the effort?
Post by: Sluff on January 18, 2007, 05:34:51 PM
To keep going back and forth is probably more excitement than I can handle without kidney function.  Epoman, Your remarks are very much like a child's.  Did the loss of your kidneys at a young age prevent you from growing up and having the childhood so many are fortunate to have.  I'm sorry man, I guess you're making the best of it though!


Lost sheep if your not satisfied with the information you recieve from IHD then Why are you here? Why don't you just end it all and quit being a coward about it. You seem to talk a big line but anyone who is serious about ending their life would just do it. You are reaching out for something or you wouldn't be here. So come clean and tell us what you are looking for. A lot of members here have tried to reach out and help you and all you do is slap them in the face. I will not allow this to continue, so decide exactly what you want from IHD or leave voluntarily. Our members here deserve to be treated better, instead of tolerating someone like you.

Sluff, Moderator
Title: Re: What makes it worth the effort?
Post by: RichardMEL on January 18, 2007, 08:29:01 PM
OK I'm back with another opinion that perhaps lost sheep will find un-impressive. So be it.

His 2nd last post, about the eat, drink and be merry sums things up for me. For him (and I am trying to take the arrogant and insulting stuff out of this) is about QUALITY of life vs. QUANTITY.

I think this is a basic desire most people in the world have at their core.

The issue I have though is that lost sheep appears to have decide it's over before he's really begun to see what he can and can't do on dialysis.

Sure, you DO need to change some things, but actually I have been reasonably surprised with some aspects I did not need to change as much... As it happens I didn't eat a lot of the high-potassium foods anyway, so keeping those out or low was no real problem. Yes, the drinking is an issue, but if lost sheep did PD or home hemo nightly I understand there is little to stop him from drinking as much as he wants. Although I don't recommend self needling when drunk (or in some other kind of altered state..). Oh yeah and I still have sex... most of the time it works as expected :-) (well when I get a chance that is, but that's a whole other argument :D )

It's funny really because for someone who appears to enjoy a fairly hedonistic lifestyle, one would think you'd want to do as much as you could to keep enjoying the base physical pleasures (eat, drink, sex) rather than throw it all in.

I can understand the feelings of frustration and limits that dialysis imposes. I can also understand that your quality of life will go down by a certain measure.. but if you give up and pack it in your quality and qantity of life will be the same: zero.

I think you should consider VERY carefully your future actions, because some are very finite!

I think many people here are fine examples of having a fine quality of life while living with kidney diease. I guess life is what you make of it....
Title: Re: What makes it worth the effort?
Post by: shay_pcb on January 18, 2007, 08:45:51 PM
I don't know if it matters, but if he felt his life was truly fulfilled and he had nothing else left to do, then he wouldn't have started dialysis in the first place to prolong his already fulfilled life. It doesn't make sense.
Title: Re: What makes it worth the effort?
Post by: Sluff on January 18, 2007, 08:50:38 PM
OK I'm back with another opinion that perhaps lost sheep will find un-impressive. So be it.

His 2nd last post, about the eat, drink and be merry sums things up for me. For him (and I am trying to take the arrogant and insulting stuff out of this) is about QUALITY of life vs. QUANTITY.

I think this is a basic desire most people in the world have at their core.

The issue I have though is that lost sheep appears to have decide it's over before he's really begun to see what he can and can't do on dialysis.

Sure, you DO need to change some things, but actually I have been reasonably surprised with some aspects I did not need to change as much... As it happens I didn't eat a lot of the high-potassium foods anyway, so keeping those out or low was no real problem. Yes, the drinking is an issue, but if lost sheep did PD or home hemo nightly I understand there is little to stop him from drinking as much as he wants. Although I don't recommend self needling when drunk (or in some other kind of altered state..). Oh yeah and I still have sex... most of the time it works as expected :-) (well when I get a chance that is, but that's a whole other argument :D )

It's funny really because for someone who appears to enjoy a fairly hedonistic lifestyle, one would think you'd want to do as much as you could to keep enjoying the base physical pleasures (eat, drink, sex) rather than throw it all in.

I can understand the feelings of frustration and limits that dialysis imposes. I can also understand that your quality of life will go down by a certain measure.. but if you give up and pack it in your quality and qantity of life will be the same: zero.

I think you should consider VERY carefully your future actions, because some are very finite!

I think many people here are fine examples of having a fine quality of life while living with kidney diease. I guess life is what you make of it....



RichardMEL I think you are a Saint to have the patience you seem to have, and the zest for life and the willingness, to help someone that seems to have their mind made up.
Title: Re: What makes it worth the effort?
Post by: RichardMEL on January 19, 2007, 07:48:50 AM
Thanks for the kind word *blush*

of course lost could just be a troll on here delighting in the reaction he gets. Hey, some people are like that.

Note though that, taking lost's words on face value, while I understand his argument in terms of quality if life, I don't personally condone what he considers to be a good lifestyle, or rather all there is to life (as in sex, drugs, rock'n roll)...  but I can understand someone who has those views feeling their quality of life being diminished by dialysis... and I guess by extension I can apprieciate feelings of wanting to throw it in.

but that isn't for me :) damnit I want heaps more sex before I give it in!!! *grin*
Title: Re: What makes it worth the effort?
Post by: Joe Paul on January 19, 2007, 09:05:13 AM
Thanks for the kind word *blush*

of course lost could just be a troll on here delighting in the reaction he gets. Hey, some people are like that.

Note though that, taking lost's words on face value, while I understand his argument in terms of quality if life, I don't personally condone what he considers to be a good lifestyle, or rather all there is to life (as in sex, drugs, rock'n roll)...  but I can understand someone who has those views feeling their quality of life being diminished by dialysis... and I guess by extension I can apprieciate feelings of wanting to throw it in.

but that isn't for me :) damnit I want heaps more sex before I give it in!!! *grin*
I'm sure Epoman is on top of whoever this is, someone serious, or breaking balls.
Title: Re: What makes it worth the effort?
Post by: lost sheep on January 19, 2007, 12:03:36 PM
Just so you know.....I am not just breaking balls here.  I have IGAN.  I had a seizure at work, was taken to the hospital and THEY started me on dialysis.  I have been going to a center for a couple of months now and will continue to go until I'm not exactly sure yet.  I would like to spend a week or so with my grandparents first.  I still haven't spent all of the money yet either!  I think its nice to not go so suddenly, its not such a shock for anybody.

Thanks to the few responders who took time to put thought into their words before using them.

I know this can be a difficult subject and some people act as they do because of what they have invested.  I also might be too proud of what I have done after fighting for so long.  So proud that everyone else must also choose as I have for it is the best way.

I would have liked to have had a better understanding but it seems a bit late.  You are only welcomed to this site if you think as majority population.  I do not.  Good luck to you all and God Bless.  Ask St.Benedict for his help.
Title: Re: What makes it worth the effort?
Post by: Sluff on January 19, 2007, 12:55:55 PM
I would like to spend a week or so with my grandparents first.  I still haven't spent all of the money yet either!  I think its nice to not go so suddenly, its not such a shock for anybody.

Thanks to the few responders who took time to put thought into their words before using them.

I know this can be a difficult subject and some people act as they do because of what they have invested.  I also might be too proud of what I have done after fighting for so long.  So proud that everyone else must also choose as I have for it is the best way.

  You are only welcomed to this site if you think as majority population.  I do not.  .  Ask St.Benedict for his help.

So you're not really ready to quit dialysis yet because you want to visit your grandparents, and the money hasn't ran out yet. So just when will the right time be? A few days ago it was the right time. Now your changing your tune. Did you ever think maybe your granparents might like to have you around for a long time? Oh thats right this isn't about them is it.

Your statement about "your only welcome here if you think as the majority population." is the furthest statement from the truth yet.

This entire site is full of debated issues and bothsides of the issues are fully disclosed in public view. 

I will repeat myself.. if you don't like it here then leave voluntarily.

There is no sense in beating a dead horse here. You have your view and some of us have our view. There is nothing wrong with that, but making statements that are negative about this site and it's members will not be tolerated.

You are welcome to debate issues, search for answers, ask for advice, and even voice your opinion about the subject at hand. If you continue to make negative statements about this site or it's members I will be forced to recomend that Administration BAN you from IHD and it's family of sites.

If you truely feel the way you claim about this site,  than why do you continue to visit this site. Doesn't make sense to me, unless you have other negative intentions.

Sluff, Moderator
Title: Re: What makes it worth the effort?
Post by: Epoman on January 19, 2007, 01:28:10 PM
Just so you know.....I am not just breaking balls here.  I have IGAN.  I had a seizure at work, was taken to the hospital and THEY started me on dialysis.  I have been going to a center for a couple of months now and will continue to go until I'm not exactly sure yet.  I would like to spend a week or so with my grandparents first.  I still haven't spent all of the money yet either!  I think its nice to not go so suddenly, its not such a shock for anybody.

Thanks to the few responders who took time to put thought into their words before using them.

I know this can be a difficult subject and some people act as they do because of what they have invested.  I also might be too proud of what I have done after fighting for so long.  So proud that everyone else must also choose as I have for it is the best way.

I would have liked to have had a better understanding but it seems a bit late.  You are only welcomed to this site if you think as majority population.  I do not.  Good luck to you all and God Bless.  Ask St.Benedict for his help.

Really? Is that how you see it? That's funny because we have members from all walks of life and from all different backgrounds of "belief". We even had a devil worshiper who was welcomed on the site.

Quote
I would have liked to have had a better understanding but it seems a bit late.  You are only welcomed to this site if you think as majority population. I do not.

No, you would have liked for us to agree with YOUR beliefs, coddle you and tell you how sorry we are this has happened in your life, and that you are such a remarkable person and that kidney disease should have never happened to you in the first place. You only want to hear what YOU want to hear. Your problem is that you like to think that you are so different than anyone else, shall I quote you?:

Quote
I have known for a long time that I am gifted and special

You want to live by your OWN rules, well sorry but in a civilized society there must be rules in place. I think your biggest problem with me is that I do not condone your drug abuse life style. And I am literally sickened by your statement about giving up. Let me quote you again:

Quote
If I can't eat, drink, and have sex when I want, then it's basically over.

I'll say it again, to me that is a slap in the face to the members here who have been fighting Kidney Disease and Dialysis for years even decades.

I hope by this final statement of yours:

Quote
Good luck to you all and God Bless.  Ask St.Benedict for his help.

That means you will not be coming back to this site, so I too wish you luck and because even with all my health problems and being confined to a wheelchair I would not want to trade places with you, because you seem to be a very UNFULFILLED person even though you try to make it seem you are indeed FULLFILLED, because if you had truly done EVERYTHING you wanted in this life, and if you truly felt at peace and were ready to move on to the afterlife. You would embrace it and not come here to IHD looking for answers, and the things we said would not matter and you would not try to defend your actions as you would be at peace and know the truth in your heart.

But before you leave, can you leave us your emergency contact information? I think a lot of us would like to know if you "quit and gave up" or if you finally got out of your pity party and decided embrace life no matter the odds.

- Epoman
Title: Re: What makes it worth the effort?
Post by: nextnoel on January 19, 2007, 02:18:13 PM
I think you should give fighting for your life a try - there's a lot of satisfaction to stepping up to the plate!
Title: Re: What makes it worth the effort?
Post by: Zach on January 19, 2007, 02:48:01 PM

Ask St.Benedict for his help.


I think you need to ask St. Jude for his help.
Title: Re: What makes it worth the effort?
Post by: paris on January 19, 2007, 07:50:32 PM
Wow, I just read thru this thread.  I cannot imagine the day will come when I say I have done it all and I am ready to die.  I have done alot  ( well, not the "two chicks" thing!!) -- seen much of the world, worked with all types of people.  I truly feel ESRD has made me appreciate everything even more. Tomorrow isn't promised to anyone; we need to live every day with wonder and amazement.  Joe Paul, Sliff, Zach seem to all have such wonderful outlook on life and there posts make me want keep going. Epoman gives us a place to have a voice; Lost Sheep, what have you really done except please yourself?     If that is how you truly feel, why don't you step aside and let the people who want to live, have your space on this incredible earth?
Title: Re: What makes it worth the effort?
Post by: Sluff on January 19, 2007, 07:54:44 PM
Wow, I just read thru this thread.  I cannot imagine the day will come when I say I have done it all and I am ready to die.  I have done alot  ( well, not the "two chicks" thing!!) -- seen much of the world, worked with all types of people.  I truly feel ESRD has made me appreciate everything even more. Tomorrow isn't promised to anyone; we need to live every day with wonder and amazement.  Joe Paul, Sliff, Zach seem to all have such wonderful outlook on life and there posts make me want keep going. Epoman gives us a place to have a voice; Lost Sheep, what have you really done except please yourself?     If that is how you truly feel, why don't you step aside and let the people who want to live, have your space on this incredible earth?

Paris you really should try the two chick thing.  >:D ;)  just kidding
Title: Re: What makes it worth the effort?
Post by: RichardMEL on January 20, 2007, 08:41:57 AM
Paris, you know you just echoed something I was thinking for a few posts now. Sounds like all Lost has done in his very fufulling life is to please himself.. and by extension deciding to quit it all when the money (what money??) runs out and he's seen the Grandparents and/or whoever else is done is also highly selfish.

I wonder, Lost, should you come back and respond... are/were you planning to tell your grandparents, parents and any other members of your family that you are going to pack it in? Or would you just leave a little not saying how special you were and you needed to do this?

You said, I think, in your first post that you had nobody left around you..  (perhaps I am paraphrasing.. I do not have the time to dig back to page 1 for the exact quote) yet now you say you have grandparents and perhaps one or both of your parents...

Is there any consideration to the feelings of those around you who would hopefully love you? While it seems you don't seem to love yourself, you clearly have an emotional bond to those grandparents (as you should) since you want to see them again.. but you seem to put yourself ahead of them and everyone else if you just want to pack it in.. no aparent thought or care for those you leave behind. Granted, maybe not a lot of people will shed a tear, if your posts are any indication of your true personality and outlook on life ("me! me! me! it's all about ME!" is surely how it comes across).

I feel sorry for those members of your family who will bear the emotional burden and pain if/when you give up the ghost.

As for negative comments about this site.. Hey, we are all entitled to our opinions and I'm happy to debate backwards and forwards a point of view, but I am not certain making those sorts of comments help. Also, if the site were such as you suggest, run to the "majority" viewpoint, then surely Epo or some other admin would have booted you off ages ago.

It seems a little odd wishing "us" all luck when you clearly seem to think we have the wrong idea about how most of us try to cope with kidney disease...

I certainly wish you luck too, and the maturity and self awareness to think perhaps of others than yourself during this difficult time. While having to deal with Dialysis and the like is bloody difficult for those of us on it, it sometimes can be easy to forget those around us who care and love us and feel sad, helpless and frustrated.... don't add to that by taking the easy, selfish way out.

Just my 2 Australian cents worth
Title: Re: What makes it worth the effort?
Post by: angela515 on January 20, 2007, 09:34:31 AM
I personally believe that everyone should be able to make their own choices, medically. If they want to not do dialysis, they shouldnt have to do it for other's. I personally want to live, and thats why I did choose dialysis, however I respect the fact not everyone wants a life on dialysis, and thats their right if thats what they want.
Title: Re: What makes it worth the effort?
Post by: glitter on January 20, 2007, 10:09:42 AM
maybe he posted from that dark ugly ,lonely place inside all of us-that gives-up doesn't care,lashes out at the very people who try to help us-in anger/dispair. Maybe he is in denial about the whole reality-doesn't want to face it-and being mean to the people here is just a cry of rage at himself.maybe he just wanted compassion,and didn't know how to ask for it.....
Title: Re: What makes it worth the effort?
Post by: stauffenberg on January 20, 2007, 11:04:38 AM
I support Lost Sheep 100%.  This board is called "I hate dialysis," not "I am so afraid of admitting how bad my life on dialysis is, that I forbid anyone else to say anything which may open my eyes."  Epoman founded this site so that people could express their true feelings about dialysis without the usual censorship we have to endure from the medical profession, which is always trying to "Disneyfy" our experience and get us to chirp that everything is wonderful, so they will feel powerful and good, and so society will not have to admit that it should do more to address the plight of dialysis patients.  But it is then extremely ironic to find that the same instinct to paper everything over, to cover everything up, so that we can all continue whistling through the cemetery like children afraid of the dark, and never admit how bad things really are, because we are not mature enough to face up to the real difficulties of the situation, and have to take refuge in overly optimistic fantasies, recurs, despite the freedom of this forum, as a result of what the patients themselves seem to need, rather than the institutions which seek to dominate them.

Let's admit the facts rather than try to hide from the truths Lost Sheep dares to speak, but which few here dare to hear.  The incidence of clinical depression among dialysis patients has been measured at rates ranging between 5 and 60%, depending on the study population.  Anxiety is reported in 50 to 70% of dialysis patients. (Data from Jeremy Levy, et al, Oxford Handbook of Dialysis (Oxford: Oxford University Press, 2001, pp. 64-65.)  20% of dialysis patients die from voluntary withdrawal from dialysis (Levy, p. 530), and 5% of dialysis patients actively commit suicide, a very much higher rate than in the normal population.  Levy concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die." (p. 534)
Title: Re: What makes it worth the effort?
Post by: boxman55 on January 20, 2007, 04:32:37 PM
"I certainly wish you luck too, and the maturity and self awareness to think perhaps of others than yourself during this difficult time. While having to deal with Dialysis and the like is bloody difficult for those of us on it, it sometimes can be easy to forget those around us who care and love us and feel sad, helpless and frustrated.... don't add to that by taking the easy, selfish way out." Well stated, I personally have ignored others around me because I was feeling sorry for myself. Even to the point of lashing out. I need to fix that----Boxman55
Title: Re: What makes it worth the effort?
Post by: Epoman on January 20, 2007, 06:26:47 PM
I support Lost Sheep 100%.  This board is called "I hate dialysis," not "I am so afraid of admitting how bad my life on dialysis is, that I forbid anyone else to say anything which may open my eyes."  Epoman founded this site so that people could express their true feelings about dialysis without the usual censorship we have to endure from the medical profession, which is always trying to "Disneyfy" our experience and get us to chirp that everything is wonderful, so they will feel powerful and good, and so society will not have to admit that it should do more to address the plight of dialysis patients.  But it is then extremely ironic to find that the same instinct to paper everything over, to cover everything up, so that we can all continue whistling through the cemetery like children afraid of the dark, and never admit how bad things really are, because we are not mature enough to face up to the real difficulties of the situation, and have to take refuge in overly optimistic fantasies, recurs, despite the freedom of this forum, as a result of what the patients themselves seem to need, rather than the institutions which seek to dominate them.

Let's admit the facts rather than try to hide from the truths Lost Sheep dares to speak, but which few here dare to hear.  The incidence of clinical depression among dialysis patients has been measured at rates ranging between 5 and 60%, depending on the study population.  Anxiety is reported in 50 to 70% of dialysis patients. (Data from Jeremy Levy, et al, Oxford Handbook of Dialysis (Oxford: Oxford University Press, 2001, pp. 64-65.)  20% of dialysis patients die from voluntary withdrawal from dialysis (Levy, p. 530), and 5% of dialysis patients actively commit suicide, a very much higher rate than in the normal population.  Levy concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die." (p. 534)

I never said life on dialysis was great or that I was afraid to admit the truth, YES dialysis SUCKS and I hate living my life this way. This is not the way life was intended to be lived. I too get depressed and have anxiety attacks, and I have dealt with MANY complications of long term dialysis. And I too have felt that I'd rather be dead at times. In fact I welcome death and when it is my time to go, I am READY. However as long as I am on this earth and I can take a breath on my own, I will fight and do what I can to survive, because I am a fighter and a survivor. My personal problem with "lost sheep" is his character as a human being for saying "If I can't eat, drink, and have sex when I want, then it's basically over." to me that is very shallow and immature. But he has a right to say it, as it is his life, BUT I have a right to point out my opinion of what I think of him. And if he doesn't like hearing my opinion or others then he can go to another site where members are censored.

 :thumbup;

- Epoman
Title: Re: What makes it worth the effort?
Post by: melshell on January 20, 2007, 07:04:54 PM
This topic has really bothered me since I began reading it a couple of days ago. Maybe some might feel that I'm not qualified to have an opinion, since I only recently started dialysis, but reading back over what I posted, I'm not satisfied with what I wrote. I think initially I was angry with what lost posted because he appeared to be so arrogant and self centered, and immature.  His posts also angered me because I felt like he began to question and attack other members who had chosen dialysis, and have successfully managed to have a satisfying and productive life.

Others here have a way with words, usually my forte', but as of yet I've not been able to adequately reply to any of the threads to my satisfaction. I used to be "quick witted", and although not judgemental, very opinionated. I always felt like I atleast had an idea of what I thought about everything...atleast I've always kind of known or believed that my ideas about things always generated from the same sound, proven, predictable place. When I look back at the choices I've made, or decisions I arrived at, I've always been clear about why I made them.

Maybe my choices weren't sex, drugs, and rock 'n roll, but I was equally as passionate about my convictions: love, laughter, family, fun. I've tried to live honestly, respectfully, with integrity and character. And, before dialysis, knowing that I had CKD and would probably end up on it, I was adamant that I would positively refuse it as a course of treatment when the time came because I could not even IMAGINE any quality to a life that revolved around extended illness, the type of restrictions that are involved, or the idea of being dependent on some type of machine-I just knew that it wasn't the life for me, that I couldn't possibly live that way.  Before dialysis, before my kidneys failed, I thought I was highly intelligent, well rounded, and experienced. I would have argued with anyone that I had lived a full life, and I still believe fully that should I die tomorrow, I will have lived a full life.

It has occurred to me the last couple of days, that this whole process for me personally has been like peeling the layers of an onion. Before I really even allowed myself to learn about dialysis, and the ability to continue a productive, albeit altered, meaningful life, I came to the determination that it wasn't worth it in my opinion. Thankfully, I discovered IHD, and I began to read about people who were making it work. I met people who still had alot to offer, who were funny, encouraging, who had been through hell, and had continued or were continuing to battle. I met people who'd just started dialysis, or were about to (same as me), and others that had been on all types of dialysis for years. When I came to IHD, my knowledge of dialysis was that it was a death sentence. Everyone I ever heard talk about it, or the people I knew personally to be on it, were sick or tired all the time. Their spirits were broken by a life that revolved around going to a clinic three times a week for hours on end to have their blood cleaned which was a grotesque, smelly, painfully humiliating existence. I wasn't even aware that peritoneal dialysis was an option, or that any dialysis could be performed at home!

I have the members to THANK for opening my eyes to a whole new world! I'm not saying that I LOVE dialysis now by any means- IT SUCKS!! I HATE IT!! I hated having to have the cath inserted, I hate that it's there! I hate the pain, the discomfort, the inconvenience, the constant care that's required... I hate figuring out how to dress and bathe all over again to accommodate the tube! I hate trying to figure out fluid balances, constantly monitoring my weight and my blood pressure, and trying to figure out what strength I'm gonna use every night! I hate that there's always a chance that the exit site will become infected, or that I'll get the dreaded peritonitis!! I hate the monotony of going through all the motions to get connected EVERY SINGLE NIGHT OF MY LIFE until, hopefully, I get a transplant that may or may not last! I hate that no matter how much I try to anticipate any and every single thing I may want or need while I'm hooked up and make sure that it's gonna be within reach, that it never seems to fail that something remains to be just outta the allotted distance! I hate that although I feel alot better than I did pre-dialysis, I still don't feel all that great! I hate that I haven't been able to work, and that we're struggling financially. I HATE that my life and the lives of the people that I love have had to change so drastically to accommodate my health, and I hate that I can't seem to find that happy go lucky, caring, considerate person I used to be, and more often than not, I find myself apologizing over and over for snapping at the people who love me, and are only trying to help. I HATE being dependent on a machine period, and I get disgusted and depressed when I'm tethered to it. What I hate the most is waiting...Patience isn't my strong suite!! FINALLY, I hate that I seem to be soooo angry all the time, and that I go into these dark places that I never even knew existed, and lose my patience so quickly with people who appear to be utterly clue-less! (Sheesh, guess I went into a bit of a rant there!-Sorry!!)

Getting back to what I was trying to say, it's been like peeling the layers of an onion...It hasn't been anything I've looked forward to, and I've shed some tears. On the other hand, it hasn't been anything like I've expected either. I've met alot of great people that I otherwise might never have met, and learned alot reading their personal experiences. Because of the members on this site, I feel better able to deal with what's going on with my health, I am better informed about what to expect due to the experiences others have shared, and because of the wealth of knowledge and experience of the members on this site, I know that I have access to a wealth of information from people with real life experience, all I have to do is ask, and I have somewhere to go and someone who will always be there when I'm worried or scared that will have a word of encouragement to offer, and others who are ready to endure my setbacks with me, or are ready to celebrate with me when my good news comes.

As for whether if it's worth it or not...? I guess it depends on how you feel personally about whether you believe living in general is worth it or not. As for me, I just keep peeling back the layers!

Title: Re: What makes it worth the effort?
Post by: DeLana on January 20, 2007, 07:43:23 PM
Lost Sheep,

I haven't read all of the replies, and you may think I'm out of line for even commenting here since I'm not a patient (I'm a dialysis nurse - 5 years outpatient/clinic, now acutes/hospital).  But here are my  :twocents; anyway.

You sound to me like you're clinically depressed.  It's common, it's often triggered by a very stressful event (starting dialysis certainly qualifies), it's nothing to be ashamed of and it's very treatable (and also, sadly, very undertreated).

Yes, ESRD is a difficult diagnosis to come to terms with; I don't know for how long you have known that you would need dialysis, if it was rather sudden and unexpected it would be a terrible shock to absorb.  And initially it seems very, very overwhelming.

Right before starting dialysis patients usually feel very, very bad because of the untreated uremia.  When they start dialysis, they begin to feel better and this will continue for about 6 months (until they reach the maximum "improvement" and level out).  You haven't been dialyzing that long yet, so expect to see improvements in how you feel!

Also, you probably haven't had time to consider all your options.  You are not limited to get hooked up to a machine in a center three times a week; other modalities (options) for you to consider are peritoneal dialysis (PD) - done at home, usually at night; home hemodialyis, which usually requires less frequent and/or shorter treatments than PD; and of course a transplant - being young will likely qualify you for one (and if you say, I don't have a willing donor - realize that most people don't, but there is a national list for unrelated donors.)

Please get evaluated for depression and/or start treatment (medications and/or counseling).  I think it will make a big difference.

Also, listen to the good advice you have been given by the members of this forum; many have been on dialysis (or have had a transplant) for many years and are living very fulfilling lives.  The same can be said for many of the patients I have personally known.

I wish you the very best!

DeLana   :grouphug;

 
Title: Re: What makes it worth the effort?
Post by: Ken Shelmerdine on January 21, 2007, 09:51:08 AM
I've been following this thread for the last few days without comment so here's my two penn'orth.
Lost Sheep, by the tone of some of your posts you obviously feel that we on this site have nothing to contribute to you so why do you continue to post your arrogant self obsessed rhetoric. Generally on this site we offer moral support and information and even some humour for each other. We are here to help each other as much as possible. It seems to me that nothing you have said in your posts has been of any value or comfort to anybody. Don't missunderstand me in that I don't think we should ever stifle debate on the kind of subject matter you have raised but it is your sneering disrespect and contempt for us which I find infuriating. Your sole motive seems to be to try and make us feel as miserable as you for which I assure you of your complete failure in that respect. Maybe you are clinnically depressed and not the narcissistic self pitying  hedonist that you appear to be  and If so then get help. Your contribution to this site is just so tedious so why don't you just do one?   
Title: Re: What makes it worth the effort?
Post by: paris on January 21, 2007, 02:26:26 PM
I agree we all need to decide how we are going to live (or not) with kidney failure. I didn't care for Lost Sheep saying unkind things to a community he really hadn't taken time to get to know. Those who criticize Epoman and aren't comfortable with the IHD forum, should find another that more suits their personality.  I for one, come here to voice my frustration, learn from others and receive support from those who understand.



  Sluff--- the vision of the "two chicks" thing , well, let's just say the other teachers at the private, Christian school I teach at would be speechless!!!!!   My kids all laughed until they cried - too funny :clap;
Title: Re: What makes it worth the effort?
Post by: meadowlandsnj on January 21, 2007, 03:58:54 PM


As for whether if it's worth it or not...? I guess it depends on how you feel personally about whether you believe living in general is worth it or not. As for me, I just keep peeling back the layers!



That really was a great post--it put into words what I was thinking so much better than I ever could.

 :grouphug;

Donna
Title: Re: What makes it worth the effort?
Post by: meadowlandsnj on January 21, 2007, 04:09:11 PM
I support Lost Sheep 100%.  This board is called "I hate dialysis," not "I am so afraid of admitting how bad my life on dialysis is, that I forbid anyone else to say anything which may open my eyes."  Epoman founded this site so that people could express their true feelings about dialysis without the usual censorship we have to endure from the medical profession, which is always trying to "Disneyfy" our experience and get us to chirp that everything is wonderful, so they will feel powerful and good, and so society will not have to admit that it should do more to address the plight of dialysis patients.  But it is then extremely ironic to find that the same instinct to paper everything over, to cover everything up, so that we can all continue whistling through the cemetery like children afraid of the dark, and never admit how bad things really are, because we are not mature enough to face up to the real difficulties of the situation, and have to take refuge in overly optimistic fantasies, recurs, despite the freedom of this forum, as a result of what the patients themselves seem to need, rather than the institutions which seek to dominate them.

Let's admit the facts rather than try to hide from the truths Lost Sheep dares to speak, but which few here dare to hear.  The incidence of clinical depression among dialysis patients has been measured at rates ranging between 5 and 60%, depending on the study population.  Anxiety is reported in 50 to 70% of dialysis patients. (Data from Jeremy Levy, et al, Oxford Handbook of Dialysis (Oxford: Oxford University Press, 2001, pp. 64-65.)  20% of dialysis patients die from voluntary withdrawal from dialysis (Levy, p. 530), and 5% of dialysis patients actively commit suicide, a very much higher rate than in the normal population.  Levy concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die." (p. 534)

Maybe those are his truths.  My truth is that it's do dialysis or I die.  I have to try to make the best of it until I get another transplant.  I have a life I happen to like, no matter how worthless or mundane he thinks it may be.  I really don't think my life is that bad.  I have family, friends, IHD, books, music, I have the whole world. 
I had a really rough treatment yesterday, I felt sick all night but I'm still here. 

Donna
Title: Re: What makes it worth the effort?
Post by: RichardMEL on January 21, 2007, 07:51:42 PM
I was interested in Stauffenberg's response supporting Lost.

I think there are two seperate issues in this thread - one revolving around Lost's right to speak his mind, and the other revolving around the reactions (positive and negative) to the content of his posts.

To the first post, I haven't seen anyone try to deny him the right to post his views and I do not see any editing or moderation by the administrators to his posts. So from that point of view, he has been allowed to post what he likes. I support this and think it is reasonable.

Yes, some of us disgaree with the gist of his posts, or the view he seems to be expressing. Again, I see nothing wrong with that. We are all here for support and to debate the issues such as this. I personally support anyone wishing to give an opinion that hopefully isn't too personal in content (eg: person X is dead flat WRONG because....).. Opinions, in my opinion (lol), are never right or wrong.. they are just people's views and should be able to be expressed.

Finally I don't think anyone here LIKES dialysis or facing ESRD/CKD. It's how we choose to respond to our situation that is the core of this argument. I wouldn't deny someone the right to quit (or not start) treatment... we should all be masters of our own lives and our own destiny. I have already commented in too many responses my personal thoughts on Lost's own definition of a good life, and that's fine.. but I sure as hell wouldn't tell him to NOT give up if that's what he truly wanted. Seems to me one of the ultimate definitions of tryany would be losing the right to decide our personal destiny (eg: to live or die). So I guess you can all tell what my stance on Euthanasia is!

I am not sure if Lost will return here given the tone of his last message, and whatever he does I hope HE is comfortable with it... again as I posted earlier I actually feel more for those around him (eg: family) who will be left having to deal with that... but well, he wouldn't be the first to do what he seems to be contemplating. Sadly...
Title: Re: What makes it worth the effort?
Post by: Sluff on January 21, 2007, 08:06:31 PM
Every man or woman is in charge of their own ship.

This may sound a little cheesy but I like the quote "It ain't the size of the dog in the fight, It's the size of the fight in the dog"

Only you know where you are at.

 Lost Sheep if your still lurking, may you be at peace with your decision whatever you decide.