Young Like Me?

[sammiejo23]

*Edit: Haha, oh my goodness. Somehow the text of this post got completely deleted.  This was supposed to say...

As some of you know, I'm currently 19 years old and a dialysis patient. I was just wondering if there are any other members here somewhere near my age that would like to chat sometime? Feel free to hit me up.

[MooseMom]

Middle aged and cynical like me? 

(Is that a photo of you, sammiejo23?)

[RichardMEL]

You're only as young(old) as you feel... or the person you feel... or something like that. 

 

[jbeany]

Hey, check out this thread.

http://ihatedialysis.com/forum/index.php?topic=19816.0

Lots of the younger members posted.  You can send them a PM to see if they are still active on here.  I see Karen547 post a lot, and quite a bit of Lou, Riki, gothiclovemonkey, and Lady Noir, just to skim the first page of the post.  They are out there, I promise, and they will be more than happy to compare notes on being treated like a 3 year old by their docs and nurses!

The rest of us are just think young.....
But, as I pointed out to one of my teen-aged college classmates when he graciously insisted I couldn't be old enough to have given birth to him, "I own shoes older than you!"

[sammiejo23]

Haha, oh my goodness. Somehow the text of this post got completely deleted. Lol. It was supposed to say "as some of you know, I'm currently 19 and a dialysis patient. I was just wondering if there are any other members here somewhere near my age that would like to chat sometime!" Or something along those lines. Darn disappearing text...

[sammiejo23]

Middle aged and cynical like me? 

(Is that a photo of you, sammiejo23?)

Haha, hi MooseMom! I don't think I've actually spoken to you yet, but I've seen you're quite popular amongst the other members. That is indeed a picture of a me, if you're referring to my forum pic??

-Sam

[sammiejo23]

You're only as young(old) as you feel... or the person you feel... or something like that. 

 

Hahaha. I think it's definitely...not the second one. But you're close! Lol. 

[sammiejo23]

Hey, check out this thread.

http://ihatedialysis.com/forum/index.php?topic=19816.0

Lots of the younger members posted.  You can send them a PM to see if they are still active on here.  I see Karen547 post a lot, and quite a bit of Lou, Riki, gothiclovemonkey, and Lady Noir, just to skim the first page of the post.  They are out there, I promise, and they will be more than happy to compare notes on being treated like a 3 year old by their docs and nurses!

The rest of us are just think young.....
But, as I pointed out to one of my teen-aged college classmates when he graciously insisted I couldn't be old enough to have given birth to him, "I own shoes older than you!"

jbeany, hi! Thank you so much for the link, I'll definitely go and check that out! I hope nobody takes offense to the age thing...I love talking to anybody about anything. I just think it'd be nice to find someone who relates on that level, you know?

[jbeany]

None taken!  We get it - we're here because it's easier to compare notes with other patients than try to get our family and friends to "get it."  I know being sick at a younger age just adds to the stress.   It's good to have someone who shares the same generational references to commiserate with.

 I got sick in my late 20's and started D about a decade later.  I was still the youngest one in my D unit. I heard a lot of "You're too young to be this sick!" 

That's when you nod, smile, and think to yourself "Gee, that's lovely, thanks for reminding me.  Doesn't look like it's all that much fun for the older patients either.  Wanna fork over a kidney and change it for one of us?"

[sammiejo23]

None taken!  We get it - we're here because it's easier to compare notes with other patients than try to get our family and friends to "get it."  I know being sick at a younger age just adds to the stress.   It's good to have someone who shares the same generational references to commiserate with.

 I got sick in my late 20's and started D about a decade later.  I was still the youngest one in my D unit. I heard a lot of "You're too young to be this sick!" 

That's when you nod, smile, and think to yourself "Gee, that's lovely, thanks for reminding me.  Doesn't look like it's all that much fun for the older patients either.  Wanna fork over a kidney and change it for one of us?"

Ah, that's so true!  I've heard that so many times that at this point, I don't even know what to say anymore, haha. That's exactly what it comes down to is a nod and a smile and the following thoughts! I don't think it's fair this has to happen to anybody. Late 20's, late teens, ever. There was this one lady on my first day of treatment who was very nice to introduce herself and make me feel welcome and what not, and I remember talking with her. She asked me my age and when I told her, she just kind of shook her head and said "This is exactly why I'm not getting a transplant. Why give it to someone like me when it could go to someone who has their whole life ahead of them?" It absolutely broke my heart!

[RichardMEL]

Sammie - I had a gentleman say that exact same thing to me!!! I know exactly how you feel!!! And this guy was not exactly close to the grave or anything. Older than me yes, but so what?

What would also make me sad was all the folks in the dialysis unit who were not viable for transplant - either due to age, or other conditions, or whatever.

There was(is) this one guy who is only around 50. He has been stuck on dialysis for 17 odd years. The nicest guy ever. He can't get a transplant at the moment as he has these other problems he has to deal with and get sorted out. He has such a positive attitude and is a really friendly guy and he's always kind to everyone and handling things so well.

I look at him, or think of him, and it underlines just how fortunate I am to have my gift, and how sometimes those that do not deserve this crap have to deal with it and don't even have the option of a better form of treatment.

[sammiejo23]

Sammie - I had a gentleman say that exact same thing to me!!! I know exactly how you feel!!! And this guy was not exactly close to the grave or anything. Older than me yes, but so what?

What would also make me sad was all the folks in the dialysis unit who were not viable for transplant - either due to age, or other conditions, or whatever.

There was(is) this one guy who is only around 50. He has been stuck on dialysis for 17 odd years. The nicest guy ever. He can't get a transplant at the moment as he has these other problems he has to deal with and get sorted out. He has such a positive attitude and is a really friendly guy and he's always kind to everyone and handling things so well.

I look at him, or think of him, and it underlines just how fortunate I am to have my gift, and how sometimes those that do not deserve this crap have to deal with it and don't even have the option of a better form of treatment.

Ahh, it kills me! I mean...maybe there's other reasons they can't get a transplant, but that view on it...uh, I just don't agree with it. Everybody deserves a second shot. I wholeheartedly believe that. Whether you're 80 or 18. You should get a second chance. Why must life work in such unfair ways? I honestly think there is a reason for everything, but...rarely does it ever make sense. Especially not in situations like the guy's you just mentioned. I can't imagine what reasoning could possibly justify taking someones options away. I was actually talking with someone at treatment this week about how even though it might seem like things aren't the best, there are others in this world who are so much worse off and stories like this just reiterate that point. Things like this are what drive me to be grateful I only have it as bad as I have it, or grateful that I have it as good as I have it, depending on how you wanna look at it. It's just too bad that it takes becoming sick for one to really truly examine and make these sort of realizations.

[RichardMEL]

Exactly. Every time I was starting to feel down about being stuck on D and wondering where that kidney for me was I'd think of these guys and how they didn't even have that to look forward to as a goal, and how much more ddifficult would that be?

As you say, there's always someone worse off and it helps to have perspective.

And by the same token, I have tried very hard when I visit my old unit to NOT waltz around sticking it in their faces that I have a kidney. I know they are happy for me and all, but I also know how *I* would feel if this guy came in basically rubbing it in my nose(even if he didn't mean to). I don't avoid them or anything like that, but neither do I try and go on about how good it feels to not be on the machine, or how I can do x,y&z or walk around with a huge drink or somehing. I don't think that's nice or fair.

Anyway sorry kinda hijacked your thread. I'll leave you to the real young people

 

[sammiejo23]

Exactly. Every time I was starting to feel down about being stuck on D and wondering where that kidney for me was I'd think of these guys and how they didn't even have that to look forward to as a goal, and how much more difficult would that be?

As you say, there's always someone worse off and it helps to have perspective.

And by the same token, I have tried very hard when I visit my old unit to NOT waltz around sticking it in their faces that I have a kidney. I know they are happy for me and all, but I also know how *I* would feel if this guy came in basically rubbing it in my nose(even if he didn't mean to). I don't avoid them or anything like that, but neither do I try and go on about how good it feels to not be on the machine, or how I can do x,y&z or walk around with a huge drink or somehing. I don't think that's nice or fair.

Anyway sorry kinda hijacked your thread. I'll leave you to the real young people

 

It's something to keep in mind for sure! And something I'll definitely be keeping in mind down the road, should those thoughts start arising (which I suspect, at some point, they are going to).

Perspective makes a world of difference...even if there are days when I want to believe there's nobody worse off, kick, scream, and pretend it's all about me.  Hah. (Those are the days I give myself a kick in the ass and tell myself to quit being ridiculous!)

I think there's only so much you can do to prevent that...and even still, there's going to be people who see it as you rubbing it in. But it isn't so much a personal attack on you as it is them feeling bad because they'll never have the chance to be the one with the pretty new kidney. The one with the capability to strut around and show off. That being said, you have every right to be proud of your what you've been given; let people have their own misconstrued perceptions. You can't win them all over. (There will be haterrrz to deal with!) I deeply admire how aware you are to how not nice and not fair strutting around is, and I think it's AMAZING that you are in check with it. Respectful people are sometimes hard to find, but you sir, have a lot of it.

Don't worry about hijacking this post! Haha. It's for everybody, even the twice my ages! Hahaha. And of course there's always an exception for you, Mr. Richard. I quite enjoy your insightful comments!

[RichardMEL]

flattery will get you everywhere.... 

 

[MooseMom]

Haha, hi MooseMom! I don't think I've actually spoken to you yet, but I've seen you're quite popular amongst the other members. That is indeed a picture of a me, if you're referring to my forum pic??

-Sam

No, I'm not popular...just loud.

I love that pic of you.  It's brilliant.

My son is your age.  I am lucky to have him because when I was in the latter stages of pregnancy, I had pre-eclampsia and was in the hospital for 6 weeks.  Turns out my kidneys were failing, and I was lucky to survive the ordeal.  I was looking forward to having a normal life, much like the one you were looking forward to...me having my new baby and you enjoying college.  But I was diagnosed with fsgs which causes gradual scarring over of the kidneys.  I had no idea if I'd get to live to see my baby grow up, and to make it all even more horrible, my baby turned out to be autistic, so both he and I would never get to have a "normal life".  I am not on D yet, but it's around the corner, and my son is still autistic, and the struggles never stop.  I get envious whenever I see "normal" people, and when I hear of someone getting their miraculous transplant, I can never imagine that I would ever actually be lucky enough to have such a miracle for myself.  I will always be sick, and my son will always be disabled, and nothing in this world is ever fair.

I tell my son, and I will tell you, that most people have something in their lives that makes life hard.  For my son, it's his autism.  For someone else his age, it may be kidney disease or an abusive parent or an ill parent or a dead parent or unbearable shyness or an eating disorder or substance abuse or a random car accident or a disabled sibling or any manner of thing.  I personally don't think there is some cosmic reason for why you had cancer and now have to be on dialysis or why I have an incurable disease or why my son is autistic, but if you want to believe there is a reason and then DO something to help relieve someone's suffering and thereby CREATE a reason ("Oh, sammiejo got sick because she was destined to become an advocate for young people on dialysis!"), then that's another thing entirely.

It's interesting to read what RichardMEL had to say about "showing off" a new kidney and how it may make someone else feel.  It is not possible to be responsible for everyone's feelings.  Needing a kidney and seeing someone else get one can be uniquely painful, not because you begrudge the recipient but, rather, because you fear that the same miracle will never happen to you.  I noticed something interesting the other day while I looked at the transplant forum.  Generally speaking, it seems that whenever someone posts that they are going to be getting a transplant on such and such a day, the people who reply tend to be either themselves recipients or else they are the caregivers who don't need a new kidney.  While all of us are very happy for the prospective recipent, it is very hard to read about all of the people who are getting their miracle while you wonder if you will ever have that second chance at live again.  That said, if you do get your miracle (if you are going to explore transplantation), I would hope that you'd share that wonderful news.  In the meantime, I wish I could take away all of your pain and rage.  One thing I have to say about being older...by the time you get to be my age, you don't really care about being "different".  I don't care if my friends can go out for a drink and I cannot (I'm not on D yet but I can't drink much because of all my gazillion meds)...they don't care either.  I think that when you are young, being different is harder.  But when I was 19, it seemed all my friends were "different".  Some were gay, some were just weird, some were different in an undefinable way, but they were all brilliant friends (and even then, I was the only one who didn't drink, and no one even noticed!)

[Henry P Snicklesnorter]

.

[rsudock]

No, I'm not popular...just loud.

Such Modesty.

Popular is what you are ....... oh, and loud ......but we love you for it   

here here I agree Henry! Love ya Moose mama!!


Sam I just turned 27 years old...I have lived with kidney disease my whole life. like others have said their are many folks on here young and old who have dealt with kidney disease their whole life. I always find hope in reading some of the other long time D patients posts because they have found a way to cope and deal with D. It is that small glimmer of hope and strength from others that raises me up and helps me deal with D....

xo,
R

[cariad]

Hi Sam! It is always heartbreaking for me to read of a young person on dialysis, and there are many here. You have a remarkable attitude and a lovely energy about you that shines through in your posts. (Are you sure you're only 19? I'll need to see a Live Certificate of Birth, please, and it better be the long form.... )

I think it's completely understandable that you want to especially focus on people your own age. There are certainly different battles for each age group, and while I can sympathize with your life being derailed just as it was getting started, I can only empathize and trade strategies with people concerned about the effect of kidney failure on their young children and career. One of my favorite stories is from a childrens book entitled Zen Shorts. I am sure you've heard the story, it is just another interpretation of an ancient tale, but it seems to align with your attitude. I'll go find it and see if I can summarize it here.

I suspect you will power through this challenge with grace and humor. We're all behind you.

[cariad]

OK, I found it. It is short, so I'll just transcribe it here:

There was once an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbours came to visit.
"Such bad luck" they said sympathetically.
"Maybe," the farmer replied.
The next morning the horse returned, bringing with it two other wild horses.
"Such good luck!" the neighbours exclaimed.
"Maybe," replied the farmer.
The following day his son tried to ride one of the untamed horses, was thrown off, and broke his leg.
Again the neighbours came to offer their sympathy on his misfortune.
"Such bad luck"they said.
"Maybe," answered the farmer.
The day after that, military officials came to the village to draft young men into the army to fight a war. Seeing that the son's leg was broken, they passed him by.
"Such good luck!" cried the neighbours.
"Maybe," said the farmer.

Ta-da! A lovely little piece to muse upon for a moment.

Anyhow, I am wishing you good luck, the kind that doesn't turn upon you every step of the way....

[qmdono]

*Edit: Haha, oh my goodness. Somehow the text of this post got completely deleted.  This was supposed to say...

As some of you know, I'm currently 19 years old and a dialysis patient. I was just wondering if there are any other members here somewhere near my age that would like to chat sometime? Feel free to hit me up.

 
 
     Me and you are around the same age I'm 20 going on 21talk to me if you want to. 

[sammiejo23]

Yay!  Haha. I sent you a message.

[texasstyle]

I strongly feel over time that you find that once you start interacting with all the members here, age is only going to be a small part of it.( at least when you are here) The big plus is that you will learn an incredible amount from everyone older than you and that wisdom is going to make you something special. It really will.  As you start getting older in general you find that were all pretty much the same. No matter what you're age you are always 18 in spirt. I'm 46 and fell 18 still though I probably act like 10 lol. Use your knowledge to make your life ahead of you be the best it can be. You may be on dialysis but there is still LOTS of living for you!

[sammiejo23]

Haha, hi MooseMom! I don't think I've actually spoken to you yet, but I've seen you're quite popular amongst the other members. That is indeed a picture of a me, if you're referring to my forum pic??

-Sam

No, I'm not popular...just loud.

I love that pic of you.  It's brilliant.

My son is your age.  I am lucky to have him because when I was in the latter stages of pregnancy, I had pre-eclampsia and was in the hospital for 6 weeks.  Turns out my kidneys were failing, and I was lucky to survive the ordeal.  I was looking forward to having a normal life, much like the one you were looking forward to...me having my new baby and you enjoying college.  But I was diagnosed with fsgs which causes gradual scarring over of the kidneys.  I had no idea if I'd get to live to see my baby grow up, and to make it all even more horrible, my baby turned out to be autistic, so both he and I would never get to have a "normal life".  I am not on D yet, but it's around the corner, and my son is still autistic, and the struggles never stop.  I get envious whenever I see "normal" people, and when I hear of someone getting their miraculous transplant, I can never imagine that I would ever actually be lucky enough to have such a miracle for myself.  I will always be sick, and my son will always be disabled, and nothing in this world is ever fair.

I tell my son, and I will tell you, that most people have something in their lives that makes life hard.  For my son, it's his autism.  For someone else his age, it may be kidney disease or an abusive parent or an ill parent or a dead parent or unbearable shyness or an eating disorder or substance abuse or a random car accident or a disabled sibling or any manner of thing.  I personally don't think there is some cosmic reason for why you had cancer and now have to be on dialysis or why I have an incurable disease or why my son is autistic, but if you want to believe there is a reason and then DO something to help relieve someone's suffering and thereby CREATE a reason ("Oh, sammiejo got sick because she was destined to become an advocate for young people on dialysis!"), then that's another thing entirely.

It's interesting to read what RichardMEL had to say about "showing off" a new kidney and how it may make someone else feel.  It is not possible to be responsible for everyone's feelings.  Needing a kidney and seeing someone else get one can be uniquely painful, not because you begrudge the recipient but, rather, because you fear that the same miracle will never happen to you.  I noticed something interesting the other day while I looked at the transplant forum.  Generally speaking, it seems that whenever someone posts that they are going to be getting a transplant on such and such a day, the people who reply tend to be either themselves recipients or else they are the caregivers who don't need a new kidney.  While all of us are very happy for the prospective recipent, it is very hard to read about all of the people who are getting their miracle while you wonder if you will ever have that second chance at live again.  That said, if you do get your miracle (if you are going to explore transplantation), I would hope that you'd share that wonderful news.  In the meantime, I wish I could take away all of your pain and rage.  One thing I have to say about being older...by the time you get to be my age, you don't really care about being "different".  I don't care if my friends can go out for a drink and I cannot (I'm not on D yet but I can't drink much because of all my gazillion meds)...they don't care either.  I think that when you are young, being different is harder.  But when I was 19, it seemed all my friends were "different".  Some were gay, some were just weird, some were different in an undefinable way, but they were all brilliant friends (and even then, I was the only one who didn't drink, and no one even noticed!)

Oh MooseMom, I apologize! I didn't see that you had responded again! I feel bad that you wrote such a heartfelt response and I am only just now replying! Thank you for the comment on my picture. I appreciate that. And even more so, I appreciate you sharing your story with me. Words cannot express just how deeply it has touched me. In reading it, I cannot help but feel that I have no right to complain in comparison, because you have been through, are going through, something that I certainly cannot even imagine having to face. Yes, my situation is not the best, but it's something I have only just begun to deal with. You've been fighting this battle for a lot longer and the fact that you are still fighting this battle with, what sounds to me, much grace, is incredible MM. I can only hope that I will be able to face the continuation of my own battle, or whatever other unexpected twists life might throw my way, with such strength. Your son is very lucky to have you. I don't think that anybody ever really leads a "normal" life, because who is to define normal? What's normal for one person, may not be for someone else. And normal changes. I think what matters more than anything, is that we learn to adapt to what is "normal," or what becomes it. It may not be under the best circumstances, and it may not be by choice, but like I said to RichardMEL at some point, I truly believe it takes life's strongest people to get through these things; be that the struggles, the changes, or any of the things that come along with each. I agree that nothing in this world will ever be fair, and it makes me sad. Because people like you, well you don't deserve to deal with what you've been made to deal with. You don't deserve it one bit. I'm usually a believer that everything happens for a reason, and I know that we can't always see what those reasons are, but I cannot find it in me to see what reason there could possibly be for such suffering. Maybe there is no reason for it all, unless we make one, very similar to what you said!

I won't sit here and tell you that I understand your pain, because I can only imagine what it is like to see others getting what you know you should have.  I would like to say that I can relate, with me watching all my friends lead the life I wish I could, but I feel like that does not adequately compare; not at all on the same level. So I won't sit here and tell you that I understand. But I will tell you that my heart is with you, MooseMom. And I so desperately wish that I could change things for you, and for everybody who has been forced to live with unwanted circumstances. It isn't right, and I wonder how the universe can be so cruel. But know that I am wishing for a miracle for you. And wishing that even in the midst of this storm, that you can find some sun.  I hope that I can find within myself, the strength that I see in you, and I hope that you will take comfort in knowing just how inspiring of a person you are.

[sammiejo23]

Sam I just turned 27 years old...I have lived with kidney disease my whole life. like others have said their are many folks on here young and old who have dealt with kidney disease their whole life. I always find hope in reading some of the other long time D patients posts because they have found a way to cope and deal with D. It is that small glimmer of hope and strength from others that raises me up and helps me deal with D....

xo,
R

I am finding that more and more the case everytime I return to this site. Everybody here is so inspiring...I just can't believe it. It blows me away. I was not sure what I was expecting to find when I started posting here, but this has definitely been an eye opener to me in more ways than one.