2012

So, I start 2012 with a kidney.

Wow.  It's amazing, really.  Just amazing.  I started off last year seriously thinking that 2011 might be the year kidney failure got a hold of me and sent me packing.   Now, here I am a year later - feeling very different.

Things are working well with the kidney.  This week, I'll be 6 months out from my transplant.  It's working great.... it's just awesome.

Still getting used to life with the kidney.  I've gained a BUNCH of weight post transplant - combine prednisone with a returned appetite, and a dude who loves to indulge his gourmand and... well, you get a pleasantly plump Steve.  Not like I was slim before, but dialysis had me down pretty low, weight wise.  So, I've bit the bullet, accepted that I'm in my 30's and I've adjusted my diet and joined a gym.  My amazing wife and total partner in crime, Jordan, has joined me in this endeavour and so far - it's actually been really amazing.  We joined Planet Fitness,  which is really a great place to go try to get yourself back into shape.  Not to sound crude, but it's totally a gym that a fatty like yours truly can go to without feeling bad.  There's all kinds of people in there who are just trying to get some physical activity into their daily routines and get in better shape.  It's nice.  It's not full of muscle bound lunkheads or look-at-me spandex wearing harpies.   It's just a bunch of normal peeps trying to raise their health level; the place has a real prominent no judgement policy, so it really makes it a nice environment.  I've been popping myself on a recumbent bike, running on treadmills and attempting to use an elliptical machine, but I'll tell you - after over four years of sitting in a dialysis chair, my leg muscles (hell, all my muscles) are out of shape.  But it feels good to not only get moving, but to be able to do it!  I don't feel like death warmed over when I'm done with our workout.  And Jordan is right there with me... it's actually kind of fun.  It's just nice to do something positive with my wife while these winter months keep us indoors.  Hopefully, but the time summer rolls around, we'll be in great shape to do all the outdoorsy stuff we enjoy.

So, along with working out, I'm attempting to re-enter the job world.  It's a scary prospect - I haven't worked a real job in years; I've been a chronic patient.  Trying to find something is hard - I also have to finish school sometime too.  I got sick and involved in this whole dialysis mess while I was in the middle of going to school.  So, yeah, getting a job and going back to school almost 10 years later makes me a bundle of nerves, I'm not going to lie.  Time is the worst; I know it's just going to take time, but I wish I had in all figured out right now.

So that's the start of my 2012.  I hope it all goes well, and even if that stupid brouhaha around the Mayan Calender turns out to be right (Highly Doubtful), I'm gonna bust my ass until then!  So, I wish you all a great 2012.  To all my friends out there still on "The Big D", I wish you the best.  I know how hard it is.  I know how soul crushing it can be, and I know it sucks.  I wish I could do more for you.... but I send you my heartiest well wishes.


~Steve

EDIT: Oh, and hey - if you read this and get a chance, GoogleAds throws me a few cents everytime you check out one of the ads/links over on the right side of the page.  If you ever feel inclines, click and take a look at one - every little bit helps!  Thanks!

And now, a thank you - for you, my readers!

Well, it's almost the end of a crazy year for me.  I just want to take a little time out to say "Thank You" to you - my readers.  I've gotten a few comments on some of my entries, and I've gotten some emails from some people, and I have to thank you - those make all the difference.  It's really nice to know that my writing has entertained, inspired and educated so many people from so many different places.  I enjoy writing, and I enjoy sharing it with other people - so thank you for taking the time to read what I have to say.

I'm looking forward to an interesting year as I get back on my feet again, and head out into the world as a new kidney recipient.  Not being on dialysis this Christmas is the best gift I've gotten in years.

So, again - thank you so much, all of you.


~Steve

A Christmas Story

I've always loved Christmas.  Especially when I was a kid.  I was having dinner with my parents and my wife recently, and my Dad remarked that I was "... Always great to be around on Christmas." because I was just such a bundle of excitement and joy.

I just love the season.  I love Christmas Lights on houses, I love singing Carols, I enjoy listening to Handel's "Messiah", I like it when there's a nice coating of snow over the ole' town.  I grew up in a small town just outside Syracuse - it bordered the countryside, which is a great place to take a drive through on Christmas.  I remember sitting in the backseat of my parents care, slight layer of frost giving a halo-like glow to the Christmas Lights on the houses we passed as we drove between my two Grandparents houses.  I was lucky enough to know both sets of my Grandparents while growing up.  There was always a lot of family, always a lot of love, and always a lot of FOOD!  My God, the food.  Endless bounties of snacks and beverages when you walked in the door.  Candy in dishes on every corner; as much Soda Pop as a kid could drink (without getting yelled at!) and just a mass of relatives that were so happy to see you.  Every year at this time, I still feel that joy and wonder in my mind.  That feeling of being three feet small, scampering around in a quickened gait that you didn't even notice.  Now, I lumber around at six feet tall, ambling slowly from room to room because I can already feel my knees get creaky!  But now, I'm the one who's excited to see the new children who are excited for the day.  The run around the house, playing games of fanciful imagination, and talking with a rhythm that's so quick and so foreign to me now - yet, I still appreciate the patter.  I hug my relatives, and I make merry - though I try not to over-indulge in the food and drinks, because if I do that now, I'm going to have to chug half a bottle of Pepto-Bismol later while I sit on my couch at home and whine!

I took these scenes for granted as a child; when you're young, you just take the world you are presented with for granted.  You don't have any other choice; you just know what you see.  I was so lucky to have a family that celebrated this way - and remembered to make merry with each other, and share the love that was so important at the Holiday.  As much as I loved the presents we got, and I was ALWAYS excited for that - I just loved being with these people.  Heh, on Christmas Day - after my brothers and I had opened presents, one of the first things I'd do was call my cousin to see what he got, and we'd share and get excited to hang out and see each others new stuff.

I love that I'm still here, at 33, to share my Christmas joy with these people.  We've lost a few blessed souls along the way, but picked up a few new ones.  Yet for all of the losses, the struggles the changes, the trials and tribulations, we still get together to make merry.

That's the greatest gift in my world.  I see all of these "Black Friday" sales events, and the ensuing madness as people push, yell, steal, swear and degrade themselves in all manners just to get some consumer goods, and I just get sad.  People fighting, gnashing teeth and screaming, to obtain flat-screen televisions?  Or the incident where people were beating each other to get a waffle maker.  A WAFFLE MAKER.

I know not everyone is as lucky as I am to have such amazing family at the holidays.  But filling the void with consumer goods?  I know everyone likes things - we all like to get presents on Christmas.  Some like to give as much as they get - but this madness of recent years... it hurts my heart.  I could blame retailers, for encouraging this, and I could blame people for not having the self-restraint not to participate.... the truth is, everyone is to blame here.  And it won't stop.  My only hope is that people just try to remember to keep a little tenderness in their hearts.  There's always going to be more stuff.  I can always get a flat-screen television, but I can't sit down and have a beer and chat with my Grandpa Alexander any more.  The truth is life doesn't last forever, and people will leave you.  I'd rather take the time to make the memories I'll cherish when they're gone, than to worry about what I will get them.

People have been asking me what I want for Christmas this year, and I can only sit back and say "I don't know."  I do not want for anything.  This year, I've already been given so much.  I was given a reminder of the gift of friendship, when hundreds of my friends stepped up, came out and supported me with the whole Steve-Stock thing.  I recieved hundreds of donations from friends and family not only local, but all across the United States and the World.  I had donations come in from Europe, South America, Asia and Australia.   It was amazing, humbling - and timely too.  Shortly thereafter, I recieved a gift from a family I do not know, nor have ever met.  This family donated an organ to me, from their deceased son.  And as I sit here, alive and well this Christmas - not having to sit in my dialysis chair on the day for the first time in over four years, they sit at Christmas with a chair of their own empty.  And my heart and my love goes out to them.  I know this Christmas will be incredibly hard for them - while I go on to celebrate with my own.  I toast them.

And I say, if you know me, take a moment to toast that family as well.  They are hurting this season, and I couldn't give them anything in this world to ease that pain.  But, perhaps, if we all send them good wishes, they can find some comfort together this Christmas Season.

Merry Christmas, to you and yours.  And a Happy New Year.

May 2012 be a great year for all, and not the harbinger of doom and gloom as so many callously claim.


~Steven

Heading for the Frosty Hills....

Winter is approaching here in Syracuse.  We're known for our snowy and icy winters.  When I was younger, it didn't bother me much, but now I just don't get along with the cold.  Well, I didn't on dialysis at all - I'll see how I do this year, but so far any encounters I have with the cold air still suck pretty hard.

Winter time is such a dormant time, a lot of time for reflection.  Truth is, I'm four months out from my transplant - which was amazing.  All the outpouring of support from friends and family was amazing - I'm still reeling from it.  But now, I'm a few months out - and things, on paper, are working great.  My labs are amazing, I feel good, physically (aside from a few lingering GI problems).... yet, still, there's a pretty gaping hole inside me now.

I guess, well, when you've been sick for so long, you kind of settle into a life of just trying to get by.  Now, I sort of feel like I don't quite know what to do with myself.  I've been fighting for so long, and now - the hard part of the fight has been lifted.  I'll always be fighting in some way, but the large burden is off my back.

My life, as I knew it, ended when I was 24.  I'm almost 34.  It's been 10 years of living like this, and - well - I kind of don't know where to go on the other side here.  Part of me feels like I've been in a coma for 10 years, and I've just woken up and I don't have the slightest ideas where to go or what to do.  I can't (and don't want to) go back to the life I was living before;  I'm too old for that shit, and frankly I wasn't headed down any great path there.  But where do I move forward to?  Sometimes the most frightening thing about being alive is having a great wide open path in front of you. 

Finding your way down it is the human experience, and of course, I know I will.  But, I guess, I do feel some apprehension, I do feel some depression, and I do feel a little lost and kind of useless.  I'm sure everyone feels like this, especially at crossroads in their lives.  I've got a lot to do now, and the worst part is just working through the months of slogging it out to get where you want.  Doing it in the winter, when I get seasonally depressed, is going to be hard.

I just wonder what life has in store for me.  Better yet, I wonder what I have in store for life.  I guess I still hold that dream that I want to do great things, but for now - I guess I'll settle for doing something - anything.


~Steve

I Would Be A Bad Billionaire

I drive my wife in to work every morning.  It's a rather nice ritual; we get to spend some time together, we listen to the radio and chat.  It's one of those things you might think would be a pain, but instead it's one of those little joys that make life bearable. 

Every morning for the past month, I pass a hospital on the way - and every day, parked outside of it along a corridor where many visitors park, I've seen an SUV with writing in the back of it's window.  It proclaims a mother's love for her son's High School Football team.   And every morning, I see it - sometimes on one side of the road, other days it's moved to the other.  But it's been there every day I go by.  And I wonder who she's in there to see, everyday.  I wonder what kind of tragedy has befallen someone she loves, and I think of her travelling to the hospital everyday to see them, early in the morning.  (The team referenced on her car is from quite a ways from Syracuse.)  I think about what she's going through - and I think of the lengths we can go for the ones we love.  How your own well being can be set aside, to be there - to provide support, comfort.... anything.  I don't really know why she's there, but if it's for someone who is badly hurt (as I think it is in my own little head), and my heart bleeds for her.  I wish there was more I could do.

I stopped at the grocery store after dropping my wife off; I was picking up a few things when nature called, so I excused myself to the bathroom.  When I went in, I saw that there was a homeless man in the stall, washing himself up - bags and bags of "stuff" that he was carrying around just laying around.  He looked rough; it was a cold, cold night in Syracuse last night, and I think he was cleaning up and getting warm.  I wished right then I was wealthy enough just to hand him a bunch of bills and simply say "Stay Warm."  I wouldn't care what he did with the money.  There's some out there who'd use it for some not so savory things, but I don't even care.  Whatever misfortune befell this man.... he was out there, living a rougher life than I.  I remembered to be thankful for my warm home, my loving family, my amazing friends, and my incredible wife.

I'd be a bad Billionaire, because I do have a bleeding heart, and I'd be throwing out my money to strangers like it was my job.  I know that's not the right thing to do, but I'd probably end up doing it anyway.  I don't know how some people can be so selfish - I'm not saying give money to bums, but I know people who are selfish towards their friends and family! 

I guess almost dying this year, and getting my miracle gift really made me think about all the things I love about life - the things I'd miss if I were dead.  I don't think dying with a bunch of cash to my name, and a long list of people who hated me would be the way to go.  I'm not monetarily wealthy, but what I do have.... I'm lucky for it.  I can't fault people for their greed, but I do feel sorry for them.  I just wonder if it will be worth it to them when it all ends - and it will all end for all of us someday.  Can you clutch your bank statement when you die, or can you hold the hands of the ones you love?

~Steve

The Guilt

Having had my new kidney for about two months now, I've really come to love and appreciate the simple ability to urinate again.  When you've been on dialysis for a long time, you forget what it's like.  Seriously.  It seems like such a basic (and slightly disgusting) part of life, but when the ability is gone..... you forget.

It's amazing.  Really.  And I feel great everytime I do it.

Yet, there is a sense of guilt in me - for my former comrades in dialysis.  The ones still stuck in the chair.  Still stuck with the needles.  Still stuck with the PD cath's. 

I wish you could all feel what I'm feeling. 

Kidney disease - dialysis - is horrible.  It's absolutely, soul drainingly awful.  You're just.... lingering.  Waiting... either for a miracle or for the final curtain.  Seriously.  Sounds morbid, but that's it.  And the shame of it is that most people really do not understand how diabilitating the disease is.  A lot of people think you just "go do dialysis" and you're all better.  It's just a machine keeping you hobbling along until the next treatment.  It never ends.  People languish for years - becoming former shadows of themselves.  And it's not just adults - there are CHILDREN on dialysis.  That thought breaks my heart.

So, yeah, I feel some guilt that I was given the luck of the draw, and I have a chance at a better life.  A transplant isn't a cure; as I've said.  It's just another form of treatment - a much, much better one.  But it's not a cure.

We need to support the sciences that will unlock keys to not only reverse nephrotic damage and heal the nephrons in the kidneys, but also sciences that would allow doctors and scientists to regrow kidneys for people.  Someday, probably long after I've sailed off this planet, they will be able to simply solve these problems.  But the work has to be done.  There's too many people suffering.

I don't know just what to do yet.  But I'll found out.  I will find out how I, and others, can support the promotion of kidney research.  I will find out how we can support the patients who are on now, and maybe ease their burden some.  I want to live my new life to the fullest for myself and my family - but I also feel that I need to give back, and help others find some peace.  Otherwise, I'd feel unworthy of the gift I've been given.


~Steve

Sometimes I feel....

Yeah. 

Sometimes I feel like my kidney failure robbed me of 10 years of my youth.

And, you know what - that pisses me off.

I feel like I've languished for 10 years..... 10 years.  10 years of the prime of my life..... I spent only being able to give life a middling effort because I was simply struggling to exist.

Then again, sometimes I look at that time and I think "Damn.  I did a lot with 10 middling years.  I did more than some people will ever do."

And that's true.  I did a lot of things, and I lived life the best I could.

But I can't help but feel robbed a little - and now? Now, I feel like I'm dumped out on my ass - thrown back into a real world that I haven't really been a part of for a decade.  I have to pick myself up by my boot straps, lick a few wounds, and start it-the-hell all over again. 

Getting the transplant was a gift; the miracle will be putting my ass back into this world, and doing something of value with myself.  I have to be honest, I'm not quite sure what the hell I am going to do with myself - I'm in my mid-thirties now, and I feel like I have no direction.  Where am I going to go?  I sure as hell don't have the naivety and uber-strength of youth to throw myself into some crazy, ladder climbing career and try to build myself from the ground up.   I've got a family to support now, so I'm not going to go chasing the dragon of some kind of artistic career.  I'm going back to school in the spring to finish up the degree I left behind almost 10 years ago, but what the hell am I going to do with a bachelor's degree? 

Yeah.  I'm human, I'm a bit uncertain, and I'm certainly a little scared.  I guess I'm just more mad.  You know, I get this new kidney, and I start to regain my health - but now I'm like "well, self, what do we do NOW?"  I guess on dialysis, you're just so worried about staying alive, you don't think about the after.  Well, maybe others did - maybe they had some kind of stable life before they got sick.  I didn't.  I got sick right when I was just starting to figure things out in my twenties.  Now, I'm on the other-side and feeling as whiny as some emo assbot in college. 

This is silly.  I'm sure everyone, even those I think have it together, have these "what the hell am I doing???" moments. 

Guess I just needed to vent - to write it down.  Sometimes, for me, putting the "words to the paper" helps it become real, so then I can just move beyond all that.  I know I'll find something.  I'll find me.  And I'll do right for my family.  But, everyone doubts and wonders sometimes.  Thanks for listening to me vent.

~Steve

Recovery and The Big Move

My Wife and I moved into a new place last weekend.  It's larger than our last place, but most of all - it's a home away from where I did dialysis for four years.  I don't know - I had a lot of emotions during the move. 

I spent many a day lying in my bed, feeling like crap, yearning to be free of dialysis - and when things got their bleakest, I seriously thought that I was going to die in that house.  I thought that it would be my last place of residence. 

And with the move, suddenly, the world changed again.  I could move - I could pick up the pieces of my life (and all the furniture and nick-knacks!) and start again.  To be able to do that.... well, it was overwhelming.  You resign yourself to a certain kind of life when you're chronically ill, and to have all that change in a matter of months.... well, life throws you curve balls all the time.  I guess, for me, I'm still amazed when I keep swinging.  Especially because I tend to be hit by pitches all the time!

The move was nerve wracking for me - especially since I couldn't really carry anything heavy, or really do much.  I'd get tired and winded pretty easy.  I'm woefully out of shape - spending four years in a dialysis chair can bring you down.  And let's be honest, I've never been the peak specimen of physical fitness.  But I'm looking forward to slowly rocking me into that position.  I hope to be better physically fit in a years time.  Not too lofty a goal. 

But my new place is becoming a home; Jordan's so good at making our house a home.  She did it for us at our last home.  She made it cozy, warm, safe and inviting.  She's doing it all over again here, and with such gusto! 

Our new start, and my recovery continues.  Having a transplant is a miracle.  I feel so different.... can't wait to see how the next few months pans out for me.  Baby steps - I wanna go conquering the world, and lifting logs over my head, but I'm still a bit banged up.... heh.  Someday, though.  Someday.

To all my friends still on dialysis - hold on.  I know how hard it is.  I just want to be able to reach out, and heal you.... or give you some of the relief I have now.  I hope it comes for you.  I know you're often maligned and misunderstood by friends and family - even doctors and health care staff overlook ESRD patients from time to time.  Time will come when more people understand our disease, and the dire straits it puts people into.  I know it's hard.   But I wish you the best that I can.  Hopefully, in the future, I can do something to help all of us in our struggle.  I feel it's my duty.

So, here's to new starts, hope, and perseverance.  Sometimes, it's all we have.

`
~Steve

Cynicism and Optimism: Joy

A lot of people who know me might describe me as a cynic.  It's true, I can be curmudgeonly and I have very strong opinions on many social matters and trends.  I guess it's just because I have such a passion for life and for living.  I've always been this way.  I can get cranky about a lot of things.  It's just my way.

But, I know I'm not a true cynic.  Behind most cynics, there's a cauldron of optimism that brews and it's that pile of hope that actually fuels our cynicism.  I know that my cauldron of optimism is pretty giant and it boils hot - it must, because I think that's what really kept me alive all these years as my health was failing.   I know there's good things despite all the bad that can happen, and you really need to try and grasp that when you can - and make a small difference in your own life and hopefully, the lives of those around you.

Doing a bit of light traveling this Summer made me think about it.  A few weeks after my Transplant, my wife and I got away to Lake George for a couple of days.  We went there for our honeymoon (as I was on dialysis, and we could travel there with the machine with little effort) and we went back the next year.  I'd planned to go for a couple days this year, but suddenly I was in the Hospital on a Saturday, getting a transplant and Monday was our anniversary! So when I was well enough, we got away for a couple days.  I enjoy the Lake and the Adirondacks, and I even love the Tourist-y kitsch that surrounds the town.  There's a lot of resorts who had their heydays in the 50's and 60's.  They still have that ole crazy Googie Architecture to them.... I just love it.  But my favorite part about the trip is driving home. We take Rt. 28 across the Mountains, through Blue Mountain Lake and down to Old Forge.

When I was a kid, my Mom and Dad would take me and my brothers camping in Old Forge in the summers.  I have so many fond memories, not of the Camp Sites, but of going to the Towns that surrounded the area.  It was the early 80's, so many of those great tourist shops, restaurants and other places that sprung up in the 50's and 60's were still there.  The place still looked the shining example of post-war America - before the Freeways, when the local routes were king, and driving the roads with your family on vacation was all part of the American Dream.  I guess, even as a kid, it reminded me of that optimism of post-war America in the 50's.... where we could do anything, and be anything if we worked hard enough.  Sure, some might say that we whitewash over a lot of bad about the era - in fact, that cauldron of maligned people is what exploded the social revolution and societal change in the 1960's.  So yeah, there was some not so great things about the time - but there was that great sense of optimism.  If we take anything from that era, it should be that - and everyone should be allowed a piece of that.  As much as I loved the social revolution and change of the 60's, it was just that which the birthed the cynicism and distrust that permeated the 70's and into the 80's.  People had lots of reasons for it - but in that, the cynicism was not tempered with the optimism.  So when I came into this world in the late 70's, growing up in the 80's - I felt that sting.  And as an odd child, it affected me.  So when I was taken to this place that suddenly reminded me of joy and optimism, well it just clicked with me.  Even if I had no clue why - some things in this Universe just stick with you, even if you're too "young" to comprehend why.

Driving down Rt. 28 still reminds me of that feeling of optimism today.  It cleanses my soul to ride that expanse of road.  Up and down mountains, past beautiful streams - past old billboards and roadside attractions of yesteryear, past beautiful lakes and Summer Getaways.  Past fisherman standing by the banks of creeks, long into the day when the sun starts to just set a little in the sky.  Past amusement parks and ramshackle camps.  Past the ghosts of my own childhood, and my hopes as a child.  When I was a child, I just wanted to grow up to be an Adult who could still love all of this stuff.  Well, I did that.  So if I feel like I never accomplished anything in life, I know I've accomplished something I wanted for myself for almost 30 years.  And it makes me feel good - it fills that cauldron of optimism again, and makes me able to face to world and hopefully fufill all the aspirations I have for myself now for the next 30 years.

So, yeah, I may be a little cynical from time to time.  But I'm really a dreamer.  I'm really a hopeful person.  And I, despite all the stuff that seems to piss me off, I am a lover of life.

~Steve

Family

I have been an ESRD patient since December 31st, 2002.  I was 24 years old at the time.  It's been almost a decade living this life.  So many things wander into my mind when I think about the disease as it pertains to my life - what I lost, what I gained, and how my whole life, outlook, hopes and dreams changed.

I have been lucky in one constant - my family.  I feel for those who feel the lack or loss of family in their lives - I have been blessed with not only a tight biological family, but there are those who have become family because of the love and friendships we've shared with each other.

I've also been blessed with an incredible family via my wife.  They have taken me in as one of their own, and I've been privy to the wonderful love and compassion that they share with one another.

All of these families have been my rock as I struggled through dialysis with Jordan.  They're with me now, as I heal up and become accustomed to life again with my Kidney Transplant.

I guess what I'm trying to say is I'm glad I try to cultivate my friendships and foster my relationships with my family.  It isn't always easy, and I'm not always perfect at it, but I try because I feel it's important.  All we have in this life, really, is the connections we make with people.  People have taken time out of their lives to make me more comfortable and happy, and I expect nothing less from myself.

So, if you get a chance - remember to call that old friend you haven't in a while, or drop them a line on Facebook.  I get those all the time, and I love it.


~Steve