Monday, August 29, 2016

Me Me Me ...


So to continue the "me me me" parade of posts ...

I'm getting better.  I think the issue is that recovery is slow ... and so it's hard to recognize the progress sometimes.   I mean, let's say something is getting 1% better every day.   No, let's say it's getting 3% or 4% better every day ... it doesn't matter.   A week has gone by and you're thinking, "I still hurt" ... and that may be true ... but things are a world better.

For instance, I used to not be able to grasp anything in my left hand.  Opening a drawer hurt terribly ... picking up a can of root beer was next to impossible because I couldn't make my hand grasp it.  But now, I can grasp objects.  I just opened my desk drawer with (almost) no pain.  Things still aren't sunshine and lollypops ... but if I'm being reasonable, things are much better than they were on Saturday when I fell apart.

I'm still taking the pain medicine regularly.   But I talked to the surgical nurse and I understand what's going on now.  When he cut into the wrist, there are a lot of nerves in that area.  It's very possible to get nerve damage from surgery on your arm ... and the tingling and numbness in my thumb is a sign of an angry nerve.  Basically the answer is ... "hang in there ... it will get better."

Stoney drove me to work today ... mostly because he cares more about my well being than I do.  As he frequently says with a smile, "I'm just trying to keep your squirrely ass alive."  I appreciate you, hon ... and my squirrely ass appreciates you too.

I want to thank you
For giving me the best day of my life
Oh just to be with you
Is having the best day of my life  

Dido - Thank You

Saturday, August 27, 2016

Not The Best Morning Ever ...


There's a thousand ways to hit rock bottom.  Most people's experiences involve a bottle of some sort.  Maybe drugs. 

Mine involved pain.

Have you ever stepped off a curb onto what you thought was a shallow rain puddle ... only to find yourself ankle deep in water?

That's the closest analogy I can make.  I've had a complete hysterectomy.  I've had my gallbladder removed.  I've had a hernia repair.  So I know the pain that comes with recovery.  I thought the water would be shallow.  But I guess what I didn't realize is that every pain is different.

I went into this thinking that my AV fistula would be a walk in the park.  I've had an abdominal incision from one hip to the other.  How bad could a cut on my arm be?  I remember walking around my dining room table with a pillow pressed to my belly because the pain was so bad.  I remember grasping onto my couch to pull myself up because I couldn't use my stomach muscles at all.  So how can I fall apart from this?

I woke up this morning a little after five o'clock hearing the door to the garage shut and the lock turn.  Stoney had told me the day before that he might run to Meijer in the morning for a few things.  He has problems sleeping and, in a happy coincidence, he likes shopping early when the stores are empty.  So hearing him leave wasn't only not unusual ... but it was expected.

Still ... the sound of that lock turning brought back some very bad memories of the past.  Of waking up to an empty house.  Of someone making up outrageous lies about why they were going out in the middle of the night.  I know.  I know Stoney is nothing like the other one.  I can trust him ... and I'm not exaggerating when I say that's trusting someone is an odd feeling.

So a little after five, I found myself wide awake playing on my phone.  Hurting.

The obvious question is why I didn't take a pain pill then.  It was eleven hours by that point since my last dose ... but the God's honest truth is that I didn't think of it.  I was laying there thinking about texting Stoney ... and knowing that was a clingy, silly thing to do.  Telling myself just to go back to sleep.

After forty five minutes or so it hit me.  I really hurt.  My arm ached all the way to the shoulder and the incisions burned.  I got up and got a pain pill and a bottle of chocolate milk ... and just as I was opening it, Stoney came home ... loaded with bags from ... you guessed it, Meijer.  I drank my milk ... eventually took my medicine and we talked for a bit ... and I tried to lay back down to sleep again.

But the pain got worse.  And along with the throbbing and burning ... now I was noticing little things.  Like the thrum from the fistula.  Dialysis fistulas create this ... "thrum" in your arm.  It's a good thing.  It means the fistula is viable and pushing blood.  But it's disturbing when it's new ... that electric pulse in your elbow.   And no matter how I moved my arm, I felt the thrum.

Along with that, my thumb was numb and tingling.  And along with that, the stitches were poking into my arm.  The night before I'd taken off my bandages and decided to sleep with nothing on my arm.  But now the hard, black ends of all the little stitches were poking into that tender inner-elbow skin.

All that and the throbbing and burning.  And it was all too much.

I was weepy but I got myself together enough to walk back to the kitchen to ask Stoney to put bandages on the incisions so the stitches would stop poking me ... and I just ... fell apart.  I cried like a baby.  Not just tears ... ugly, braying sobs. 

Stoney hugged me and comforted me and carefully bandaged my arms.  He looked at the clock and showed me that it had been twelve hours between pain pills ... and that was just too much.  He took me back to the bedroom and arranged the covers and pillows to make a comfy spot and tucked me in.  And in fifteen minutes or so, the pain lessened ... and although it never actually goes way ... it was enough to sleep for awhile.

I just said yesterday that things will get better ... only for it to get worse.  It's disheartening ... on countless levels.  I don't want to be a junkie ... but on pain medicine I can take a hot shower.  I can get a bottle of water.  I can not break down into a sobbing mess. 

And I can write this.

So let's try this again.  It will get better.  It has to get better.

It has to.

Better living through chemicals.

It's just past 8 and
I'm feeling young and reckless
The ribbon on my wrist says, 
"Do not open before Christmas."

Fall Out Boy - Our Lawyer Made Us Change the Name Of This Song



Friday, August 26, 2016

Things WILL Get Better ...


My mantra for several years now has been, "Things will get better."  And I'm trying to stay positive and I'm trying to stay upbeat ... but it feels like I'm walking uphill and the incline isn't getting any easier.

I have a thousand little stories ... each one is like another pebble on my head.

Like this one ...

I was walking with the surgical nurse to get the fistula placed in my arm and we had this conversation:

"So, you're getting this procedure done so you can start dialysis?"
"Yes."
"So, once you start, how long will you do dialysis?"
"Um ... ... ... forever?"

Goddamn ... that is the shortest, soul-crushingly depressing conversation I may have ever had.

Or this one ...

We were at a family birthday party last weekend and someone made a comment ... and, I assure you, they meant no harm in it ... but she said, "Good luck next week.  You're going to be just fine.  But honestly, I don't know how you can do it.    I can't imagine myself doing any of that.  I couldn't.  I mean I just couldn't."

I don't have a clue how to respond to that.  Yes ... you would do this.  If someone came to you and said ... you can either die ... or you can start dialysis.  I guarantee you'd be sticking both your arms out asking, "Left or right?"

It's not optimal.  In fact it sucks.  It sucks hard.  But seriously, what are the options?  I waited my whole life to meet someone as special as my fiance ... I can't lose him now.  We haven't had nearly enough time together ... so I just have to adjust.  We have to adjust.

The latest hurdle is the AV fistula.  They made two incisions.  They decided the artery on the left wrist was too small so they stitched that incision shut and cut another one just below my left elbow.  So the fistula is in ... but my arm hurts.  So much worse than I thought it would.  I am exhausted and I hurt so bad.  I want to just sit and cry ... and I have ... but crying doesn't help.

So ... now we wait.  In two weeks, they'll take out the stitches and I'll start exercising the arm to strengthen the new fistula.  About four weeks after that, if it's strong enough, I'll start dialysis.

Someday this blog will be happy again.  Someday it will be funny again.  I keep saying things will get better ... and they will.  Pinky swear ...

Running on, running on empty
Running on, running blind
Running on, running into the sun
But I'm running behind

Jackson Browne - Running on Empty

Friday, August 19, 2016


When I started this blog back in 2004, I talked a lot about my Dad.  He died of congestive heart failure after a massive heart attack eight months earlier.  It shook my world ... but, conversely, it wasn't terribly shocking.  My Dad's side of the family is riddled with heart issues.  His father, my grandfather, was one of the first people in this area to have open heart surgery.  Dad, of course, had issues.  His brother almost died from a bleeding ulcer which led to a heart attack.  Great uncles, great aunts, cousins ... the whole family tree is buggy with cardiac problems.

So when I had my first heart stress test three years ago, I was nervous.  I felt fine ... but so did Dad before the wheels fell off.  Everything came back fine ... in fact, my cardiologist gushed about what a great job I'd done.  I take my blood pressure medicine ... deal with my kidney failure ... and, yes, I quietly wonder if the curse of that side of the family is lurking in my genes.

Tuesday I went for a cardiac stress test once again ... this time for the kidney transplant team.  I wasn't having any symptoms but it was just one of the tests that had to be checked off the list in order to be cleared for organ transplant.  They did an echo followed by a nuclear stress test ... this time using medicine instead of the treadmill due to my lower kidney function.

The word has come back that, although the echo came back fine, the stress test came back as abnormal.  There is a shadow on the bottom of my heart ... which could either mean a blockage or something as simple as shadowing from breast tissue or my liver.   The nurse assures me that stress tests are not 100% accurate ... they're the first step in the process.  The next step is a heart cath test.

After my dad collapsed, the hospital shocked him back to life twice ... and then ran a heart cath on him.  The cardiologist on duty drew my mom and me a picture of what was going on inside his chest.  The bottom 1/3rd of his heart was basically dead.  He had so much blockage and damage that they couldn't even repair that part of it.  The doctor said they couldn't repair those arteries ... because it would be like watering a lawn when the grass is dead.  Water won't make dead grass grow ... it just makes a muddy mess.

As so they repaired the blockage in the top half of his heart and sent him home.  They told us they were "buying him time."  Eight months time, we would find out later. 

Dad was fifty nine when he had his heart attack ... which makes me a little more than ten years younger.  Is that what's in store for me?  He was a heavy smoker ... surely that contributed.  And I've considered that even if there IS an issue, they're finding it early with me so maybe they can fix it so that it never gets that bad? Or maybe it's true that it's the shadow from my liver or breast?  Could I get that lucky?

I won't know for awhile.  The cardiologist called the nephrologist who talked with the transplant team.  They all agree that, since I'm not having any symptoms like chest pain or shortness of breath, the priority right now is placing the fistula and getting me on dialysis.  I'm having the fistula placed next Tuesday.  Once it's matured, they'll scheduled me for a heart cath ... and we'll find out how far the apple fell from the tree.

Honestly, I'm tired.  I'm tired of the delays and the bad news.  I'm genuinely trying to wrap my head around this and put myself in a positive place ... but they just keep moving the finish line.

Nobody robbed a liquor store on the lower part of town
Nobody OD'd, nobody burned a single building down
Nobody fired a shot in anger...nobody had to die in vain
We sure could use a little good news today

Anne Murray - Good News

Tuesday, August 09, 2016

Avoidance 101 or How To Chop Down a Forest ...



So for the moment I've found the way to handle my situation ... is to not think about it.  Looking at the forest is too overwhelming.  Therefore, I'm looking at a tree.  And once I've cut down that tree, I'll look at the next tree.

I don't have it in me to sit and think about how I'm going to juggle everything ... work and dialysis and family and friends and life in general.  I can't dwell on how I'm going to leave for work every day at six thirty in the morning and not get home on treatment nights until eight o'clock.  I can't dwell on how the money part of it will work.  All I can do is look at one single tree.

And this week's tree is the fistula surgery.  It's Friday morning ... and is just an outpatient procedure on my left arm.  The surgery itself isn't scary.  What's scary is that this is it.  This is what has to work.  And once they do it, the new vein has to get large enough to carry the blood needed.  It has to.  It's like living in a "choose your own adventure" story ... choose A by going to page 48 ... choose B by going to page 62.  The problem is that I've already read all of the A plot ... now we're onto B.  Don't like B?  Too bad.

So meanwhile ... I avoid thinking of horrible things as much as possible. 

Every minute that I'm not sleeping or working, I spend with Stoney.  He makes me laugh and smile.  Seeing a text pop up from him cheers me up.  He makes me happy.  He tolerates my weirdness ... my singing made-up songs about everything from the dish washer to the Christmas moose.

At their office picnic, Stoney and his friends tentatively planned a wedding for us that, quite frankly, sounded more creative and fun than anything I could come up with at the moment.  After hearing their sketched out plans, I was so enamored with the idea that I started making lists.  I know that we've got too much on our plate at the moment to start setting our decisions in stone ... but it's a nice start.

Also, for the last few months, Stoney's been working on his own health issues.  He's doing such an amazing job.  I couldn't be more proud of him.   And heck, by next year I'm going to need to be on dialysis just to keep up with him.

While I tick off the days on the calendar, I go to work ... I listen to books ... I talk with my mom ... I text with the girls and laugh at their memes and their pictures and their outdoor/indoor/outdoor cats.  The world just keeps on spinning.

And while it spins, I try not to think about what's coming up on Friday.  Because this tree is large.  But so is the next one.  And the one after that.

So ... what can you do?  Gimme that axe.

Let's get to work.

That's me in the corner
That's me in the spotlight
Losing my religion
Trying to keep up with you
And I don't know if I can do it
Oh no, I've said too much
I haven't said enough

REM - Losing My Religion

Saturday, July 30, 2016

Looking for Silver Linings ...


Sometimes life throws us a curve ball.

I'm not sure how everyone else's mind works ... but I have always believed I can do anything if I can just wrap my mind around it.

Even simple things.  Let's say there's a dinner party you'd rather not attend.  You just mentally approach it differently ... look at the situation and focus on the positive until you can see it in a way that you can live with.   For instance ... the party won't last forever ... we'll 'll be home by eight o'clock ... and this restaurant DOES serve those noodles I like.  Whatever it takes until the situation doesn't seem so bad at all.

There has to be a name for what I do ... and I'm not entirely sure it's mentally healthy.  Some kind of avoidance?  Mental self-deception?  I could Google it ... but why bother.  It works for me.

So this is how I've approached dialysis.  Obviously NO option is good when it comes to dialysis.  But I looked at the pros and cons of both types and decided on Peritoneal.  Cons ... ugly, disgusting tube coming out of my belly the rest of my life.  Pros ... a somewhat "normal" life.  I'd be cycling while I slept and everything else would be the same.  Life ... work ... dinner ... movies ... trivia.  Everything else would be basically the same.

Well, that's no longer an option.  The surgeon tried to place the PD port on Thursday and there are too many adhesions ... too much scar tissue in my stomach area from my hysterectomy.  He could clean it out ... but he said he's tried that with several patients and the adhesions just grow back.  You're looking at multiple surgeries with little to no positive outcome.

So now ... hemodialysis.  Monday I go for the consultation with the vascular surgeon who will create a fistula on my arm.  Four hour treatments ... three times a week.  I'm choosing to go to a center for now because I can't imagine bringing that much medical equipment into our home ... or sticking myself with the needles ... or, worse yet, asking Stoney to do it.  It's just not something I can wrap my head around at all.

I'm trying to find the silver linings.  Little things ... we got our sides of the bed back since I don't have to be close to the bathroom anymore.  I get to shower now ... which would've been an issue with the PD port tubing.

I'm trying SO hard to find the angle ... to find how I can make this into a good thing.  I'm terrified of how this will affect my work.  I do NOT want to go on disability.   I know eventually there will be a routine ... that eventually there will be a new normal.  I just can't see it right now.  I'm scared that I've waited too long.  I'm already at 11% GFR and fistulas have to strengthen and take time to mature ... which takes six to twelve weeks.  Which ... yay?  Two to three months without treatment I suppose.

I know something will click ... and this will all be alright.  I know it will.  I just have to wrap my head around it somehow.

Time, she says,
“There’s no turning back,
Keep your eyes on the tracks”
Through the fields, somewhere there’s blue
Oh, time will tell, she’ll see us through 

Gregory Alan Isakov - Time Will Tell

Friday, July 08, 2016

My View On Chasing Amy ...


So the other night, we were laying in bed channel surfing, when Stoney stopped on Chasing Amy.

Chasing Amy is one of my favorite films.  At least in my top five.  I'm a Kevin Smith fan.  I love Clerks and Mallrats and Dogma.  But I adore Chasing Amy.  Maybe it's because he's my age ... but Kevin gets my sense of humor.  Or rather ... I guess I have that backwards   I get his sense of humor.  In any case ... it's like Chasing Amy was written for me.

Do all girls think that?  Stoney told me once that all girls feel like Alanis Morrisette's "You Oughta Know" was written for them.  And, while I haven't taken a poll, I suspect that's true.  Maybe men too.  After all, most of us have a story of someone in our past who didn't appreciate us ... someone we wish would realize how much they gave up when they passed on us.

But back to Chasing Amy ... it's not really about me.  I'm not a lesbian so it's not like the character, Alyssa Jones, is my spirit animal.  But I get her.  I get her spirit and her openness and her attitude. If you haven't seen the movie, let me give you a quick run down ...

Holden and Banky are comic book artists and best friends.  At a convention, they are introduced to Alyssa Jones, an attractive, fellow comic book artist.  She's invites them to a club ... where Holden misinterprets her attention and is stunned to learn she's a lesbian.  The movie is about Holden and Alyssa's relationship and the strain their relationship creates between Holden and Banky. 

There is so much to like about this movie.  Even the smaller scenes are memorable ... like Banky and Alyssa comparing injuries they received while giving head to women ... or Holden teaching Alyssa how to play skee-ball ... or the scene with Jay and Silent Bob in the diner with Holden.

But two scenes in this movie affect me.  When Holden tells Alyssa he loves her for the first time ... it's a speech that every woman wishes she could hear.  It's long ... but you need to read this to appreciate it.
I love you. And not, not in a friendly way, although I think we're great friends. And not in a misplaced affection, puppy-dog way, although I'm sure that's what you'll call it. I love you. Very, very simple, very truly. You are the-the epitome of everything I have ever looked for in another human being. And I know that you think of me as just a friend, and crossing that line is-is-is the furthest thing from an option you would ever consider. But I had to say it. I just, I can't take this anymore. I can't stand next to you without wanting to hold you. I can't-I can't look into your eyes without feeling that-that longing you only read about in trashy romance novels. I can't talk to you without wanting to express my love for everything you are. And I know this will probably queer our friendship - no pun intended - but I had to say it, 'cause I've never felt this way before, and I-I don't care. I like who I am because of it. And if bringing this to light means we can't hang out anymore, then that hurts me. But God, I just, I couldn't allow another day to go by without just getting it out there, regardless of the outcome, which by the look on your face is to be the inevitable shoot-down. And, you know, I'll accept that. But I know, I know that some part of you is hesitating for a moment, and if there's a moment of hesitation, then that means you feel something too. And all I ask, please, is that you just - you just not dismiss that, and try to dwell in it for just ten seconds. Alyssa, there isn't another soul on this fucking planet who has ever made me half the person I am when I'm with you, and I would risk this friendship for the chance to take it to the next plateau. Because it is there between you and me. You can't deny that. Even if, you know, even if we never talk again after tonight, please know that I am forever changed because of who you are and what you've meant to me, which - while I do appreciate it - I'd never need a painting of birds bought at a diner to remind me of.
And maybe that speech right there is why the hockey scene destroys me. 

Holden finds out something particularly racy about Alyssa's past and confronts her with it at a hockey game.  The way their argument builds in time with the fight happening on the ice ... the subtle sound of the heartbeat in the background ... it all comes together to make the tension almost unbearable.  When they take the argument to the parking lot, it gets exponentially worse.  Holden accuses Alyssa of being used, Alyssa screams back that it was just sex, and Alyssa winds up in tears ... sobbing on the ground after Holden tells her he wants something they can never have ... to just be a "normal" couple.

So ... I can't say I've ever had that argument.  Although I had something similar.  What I experienced was a fraction of what Alyssa experienced with Holden.  It's really not even comparable ... except that ... it is.

I went out handful of times with a particular man.  Our families had been close.  His mother and my grandmother were practically best friends.  He was much older than me ... probably 12 or 15 years at least ... but, even still, on paper we should've been a good match.  We had similar personalities ... or at least I thought we did.  It was a thing ... and for a hot minute there was a buzz throughout our families because we had started seeing each other.

Then one night he picked me up for dinner.  He pulled me across the truck's bench seat to sit next to him.  We were just casually talking ... when I said something about "back when I lived with someone."  His brow creased and he said, "What?"  I waved my hand and said, "Oh, you know ... I shared an apartment with someone after high school."  He physically reacted ... drawing away from me.  I was genuinely confused.  "What?  Didn't you know?"  "Did I know?  Know that you lived with someone?  No ... I didn't know you lived with someone.  Thirtywhat?  Little Thirtywhat???  You lived with someone?"  He looked shocked and disgusted.

It hit me at that moment.  His parents ... the ones that were best friends with my grandmother ... were deeply, deeply religious.  His father had been the preacher at my grandmother's Baptist church.  I drew away to the other side of the truck.  My face was hot and flushed.  I felt ashamed ... and angry.  Ashamed because the relationship I'd mentioned had been an abusive shit-show with someone I should've never been involved with in the first place.  But I was also angry ... angry that this man was judging me.

It didn't escalate to the degree of the argument in Chasing Amy ... primarily because we weren't in a relationship yet.  We hadn't spent the night together.  Neither one of us loved each other ... hell, we obviously didn't even know each other.  We each sat on opposite sides of the truck ... not speaking.  We didn't scream at one another.  We both quietly suffered through a terribly awkward dinner ... and afterwards I asked him to take me home.

He apologized later.  A got a telephone call assuring me that he didn't care that I lived with someone ... he was just surprised.   It took everything I had to be gracious ... because every cell in my body wanted to yell, "Thank you so much for not caring!  I was laying awake at night wracked with guilt because you might have an opinion about something I've done in the past."

The point of this overly-long post is this.  I watch Chasing Amy and I get that scene.  Alyssa isn't proud of her past ... but she is furious that Holden throws it up at her and holds it against her.  That scene breaks my heart all over again every time I see it.  Not for me, mind you ... because that guy was a douche and I thank the Lord Jesus Christ and all the saints of Heaven every day when I put my feet on the floor that I dodged that particular bullet.  But it breaks for Alyssa ... because she genuinely thought she found the love of her life in Holden.

Would it have worked if Banky hadn't told Holden about her sordid past?  Would they have lived happily ever after and had a mini-van full of adorable, squeaky-voiced children?   I suspect not.  Holden would've found a way to screw it up.  But still ... I watch this movie over and over (and over) ... and each time I think maybe this time Holden will sit in that swing on the playground ... and not come up with the world's worst solution to a relationship problem.

She's your girlfriend
It's getting harder to see
Better just take her home
Better just let her be
When she walks out that door ...
you'll come looking for me
Soul Asylum - We 3

Wednesday, July 06, 2016

Weary ... But Not Alone ...



So the news came down today.  The inevitable is upon us.  I'm down to 11% kidney function ... and there is no more delaying.  The clinic will be calling later today to schedule the dialysis port surgery ... and Matt from the dialysis center will be calling to schedule PD training.

I think what hit me hardest is that I didn't have to make a followup appointment.  After years of visiting the girls at the desk to schedule my next visit, the routine has changed.  From now on, appointments with my nephrologist will be at the dialysis clinic. I don't have words for how crushing that is.

We knew this was coming.  The nurse called yesterday to tell me the blood work numbers ... and to prepare us for the conversation.  It was time to start treatment.  Stoney was a blessing.  He went with me and held my hand.  We made lighthearted conversation while waiting for the doctor ... and I joked that it isn't like we would hear anything new.  It's not like the nephrologist would walk in and say, "Guess what??  There IS a third option we haven't talked about!"

Stoney made me laugh when he suggested maybe the doctor would come in and, with a grand Oprah gesture, yell, "Look under your chairs!  YOU get a new kidney and YOU get a new kidney and YOU get a new kidney!"  I laughed and said, "More likely she'll say, "Look under your chair ... there's a dialysis release form.  Sign it."

No ... we've covered all the bases and I've researched until my brain is numb.  I think I've chosen the lesser of all evils.  Yes, I know I'll feel even less physically attractive ... if that's possible.  But a tube in my belly seems like a better choice than sticking myself with needles three times a week.  It will be easier on Stoney because he won't be required to help me with handling blood or needles.  Plus PD is supposed to be easier on the body and preserve bladder function longer.  So ... winning?

Dialysis is depressing because it's ... final.  Once you start, you will do dialysis until you die or get a transplant.  There is no third magic option.  The good news, if there is any, is that my doctor thinks I should be moved to the "active" transplant list.  Right now I'm active and on hold until I lost a little weight ... but the nephrologist thinks I'm good enough to be taken off the waiting list and be moved to fully active.  That would be amazing.  Not an instant fix ... but a piece of hope to hold onto.

Sigh ... I was going to write a cute story about Chasing Amy.  But I'll save that for the next post.  This post, I think I'll just wallow in self-pity for a moment and fret over the future.  It'll be better soon ... my posts will be happier ... and after dialysis I'll have more energy and the world will be a better place. 

But for now ... I'll settle for a rootbeer and a hug.

Guess there are times
When we all need to share a little pain
And ironing out the rough spots
Is the hardest part when memories remain
And it's times like these
When we all need to hear the radio
'Cause from the lips of some old singer
We can share the troubles we already know

Elton John - Sad Songs

Friday, July 01, 2016

The Need To Travel ...


So I was driving to work today thinking about colors and environments ... and states and the places we've experienced.  

This chain of thoughts was triggered by a field of corn ... with its glossy leaves shining in the morning sunlight.  The green was so ... green.   And right above that field was the bright blue of an Illinois sky with a few scattered fluffy clouds floating by.  For a brief moment, it really did look like something out of a jigsaw puzzle ... or one of those landscape photos that people use as computer wallpaper.

So from that wispy thought ... "it's so green" ... I thought about Ireland.  I've never been but people who have traveled there talk about how the countryside is a green like you've never seen.  I wondered if that was true ... if Ireland's fields were a brighter green or a deeper green ... or if it was just the concentration of green ... an abundance of green.

From there I thought about New York ... and the lack of green.  When I vacationed in Manhattan, I left Illinois fully expecting to move.  I accepted that I was going to cross the Brooklyn Bridge and have some kind of Woody Allen, sepia-tinged moment where I heard a distant clarinet playing and would be compelled to immediately procure a job and a third-floor walk-up. 

But that didn't happen ... to say the very least.  I hated Manhattan.  If you've never been, you can't imagine the grey.  I don't even know if I can adequately describe it.  It's just miles and miles and miles of never ending concrete.  Sure, there's Central Park ... but that's one splash of green in a landscape of grey.   You can't even see blue ... because the buildings block out the sky.

From those thoughts ... "you could barely see the sky" ... I drifted to Washington, D.C.   Unlike NewYork, there's plenty of green in Washington.  It's designed to have plenty of green.  The parking is sparse but the monuments are beautiful.  Even the National Mall was impressive ... despite smelling like a sewer in the heat of August.

But the trees.  The trees are tall.  That sounds odd, I know.  But when you're driving in some areas, it's like there are walls of trees on either side of the road.  So you see the road ... and trees ... and sky ... but nothing beyond.  I couldn't figure out why I felt so claustrophobic until I got home to Illinois.  I looked around at the corn and soybean fields and saw all that wide-open space ... the kind of wide-open space that those tall trees don't allow.

In any case ... I'm driving into work and thinking about all these things ... and I'm a little jealous.  Stoney has traveled a lot for his work ... from Maine to Seattle ... from Alaska to Texas.   Sure, Stoney and I have both seen the deserts of Nevada and we've both seen the beaches of Key West ... but I'm thinking about the colors and the environments that he's seen that I haven't. 

My conclusion for today?  We need to travel more ...

Roam if you want to
Roam around the world
Roam if you want to
Without wings, without wheels
Roam if you want to
Roam around the world
Roam if you want to
Without anything but the love we feel

B52's - Roam

Monday, May 09, 2016

My Mother's Day Surprise ...


Twenty years ago this fall, I walked into Mario's and met three adorable little girls.  I was utterly terrified.  I didn't have children ... didn't grow up with younger siblings ... didn't grow up younger cousins.  In fact, to this day, I've never watched a child overnight ... never changed a baby's diaper.  What I'm trying to convey is that I am woefully under-prepared when interacting with anyone but adults.

That night, so long ago, I looked like an idiot as the waitress looked directly at me and asked, "Will the girls need children's plastic cups with lids?"  It was everything I could do not to blurt out, "Beats the hell out of me ... ask them what they'd like to drink out of."  But I stopped myself ... and other than that gaff, the night went smoothly.  And they sat around the table ... taking turns telling jokes ... and making me more and more comfortable.

Now those little girls are grown women.  One is married to a great guy ... one moved to Chicago and is following her dreams in the theatre ... and one just came home from a month-long adventure in Europe.   They are all funny ... they are all smart ... they are all beautiful.  I feel blessed and fortunate to be a part of their lives.

We're all busy these days ... and we don't see each other as much as we'd like.   But the flowers they sent me last week for Mother's Day made my heart soar.   I know we texted and we talked ... but I'm sorry it took me this long to write a blog post.   Thank you, SO very much.   You made my day and my weekend.

I love you guys ... you are amazing.


When I see your face
There's not a thing that I would change
'Cause you're amazing
Just the way you are
And when you smile
The whole world stops and stares for a while
'Cause girl, you're amazing
Just the way you are

Bruno Mars -  Just The Way You Are

The Sweet Salt Life ... Or How I Found Myself Paying $20 For Shampoo


That picture up there?   That's a picture of our first sunset on Key West. 

We'd just finished a sunset cruise on a catamaran and were sitting down to dinner on the beach at Casa Marina, a Waldorf Astoria Resort on the south-eastern side of the island.   I slipped out of my sandals and dug my toes into the sand ... I couldn't believe that it was real.   So, I reached down, dug my camera out of my bag, and aimed out at the pier.  But honestly, looking at that picture up there now?  It still doesn't seem real.  Warm breezes ... palm trees ... Duval Street ... Hemminway's house ... Blue Heaven ... heck, even the omni-present roosters.  It all feels like something out of a dream.

At the end of April, we spent a week in paradise.  I don't think there's a way to share it all.  Our first day, Stoney went out deep sea fishing while I went on a foodie tour.  Our group walked around Key West and tried all sorts of local favorites like Cuban pork, rum runners at a real speak easy, fish tacos, and authentic Key Lime pie.  That evening, we went to Conch Republic for dinner ... and I'm not exaggerating ... I've never seen lobster tails so big.


Over the course of the week, we went to Earnest Hemmingway's house and Mel Fisher's treasure museum.  We took a cab to Duval Street and had a delicious dinner at Fogerty's.  PS - if you're thinking of going to Key West, stop by the Flying Monkey Saloon and order a Dirty Monkey.  It's a frozen drink that tastes like an alcohol-laced chocolate-banana milkshake.  Have I mentioned how I miss my alcohol soaked youth?  That's a post for another day ...



We also visited Robert the Haunted Doll at the Fort East Martello Museum.  Google it.  It's unsettling.  That was the "tourist spot" I wanted to visit on the island.  The whole museum is full of odd, spooky remnants of old Key West.  After the museum, we ate at Blue Heaven ... this beautiful, shady oasis ... and we listened to local music while we had steak and lobster eggs Benedict and fresh banana nut bread. 


Casa Marina is gorgeous and we ate our breakfasts looking out over the clear blue waters.  We spent our last evening having dinner at the Westin Sunset Pier enjoying the Sunset Celebration.  I've never seen the sun dissolve like that.   I'm not sure if that's an island thing?  If it is, it was really breath taking.

Everything about the trip was fabulous ... my only complaint?   The trip organizers told us not to bring shampoo or conditioner because Waldorf Astoria resorts provide everything.  And they did.  There were bottles of lotion and body wash and shampoo and conditioner.  But ... I'm picky.  I missed my products.  Even though I know they're more environmentally conscious and healthier, I don't care for shampoo that doesn't lather.   It's silly ... I know.

So, Stoney and I trekked down to the gift shop.   I'd already bought a pricey beach hat there ... so I thought I was prepared.  I looked around a bit and couldn't find what I was looking for ... so I asked the clerk, "Do you have any shampoo and conditioner?"  "Just the Sun Bum products over there ..."

I hadn't even noticed that shelf!  Joy! 

I grabbed a bottle of each and headed for the checkout.  My two bottles and a shot glass for Stoney added up to $52.  I tried to seem nonchalant.  This was a classy joint ... I didn't want look like a rube, you know?  But I managed to push the bottles forward in such a way that I could glance at the price ... $19.99 per bottle.  Forty dollars for shampoo and conditioner.

I'm aware salons sell products that are more expensive than that ... but I don't shop at salons.  Oh, let me assure you ... my hair smelled fabulous.   I spent the week smelling like fresh, island coconut.  But I'm pretty sure I can buy coconut-scented Suave here in Illinois for about $1.99.


In the big scheme of things?  That little complaint is miniscule.  It was the trip of a lifetime ... with my wonderful love.  He was patient with me when I got tired ... explored the beaches with me ... rubbed my back on the plane when it hurt.   I couldn't ask for more ... and I was only there because of him.   Thank you for taking me, Stoney ... it was the vacation of a lifetime.

I love you, baby!

Dancing in the moonlight
Everybody's feeling warm and bright
It's such a fine and natural sight
Everybody's dancing in the moonlight

King Harvest - Dancing in the Moonlight

Thursday, March 24, 2016

Mine Eyes Have See the Glory ...


What I'm about to say doesn't speak well of me.  It isn't complimentary at all.  It makes me sound like a rube, to be frank.  But ... facts are facts.

I'm an extremely lazy cook.  I can feed people ... it's not hard.  Spaghetti ... chicken ... steak ... potatoes ... pork chops ... whatever.  In the age of a multitude of boxes of flavored noodles and rice, anyone can throw together a meal that is edible ... and, to be honest, relatively tasty.

But I think a lot of us have fallen prey to the pre-seasoned, Sandra Lee-esque "semi-homemade" style of cooking.  We all have dozens of recipes at our fingertips ... and quite a few of them involve a can of cream of mushroom soup.   I season ... but I use a lot of garlic salt or a pre-mix of Italian seasoning.  That's about it.  Stoney's cabinet is full of spices and herbs.   And I use probably 1% of them.

Until last night.  So ... we saw a dish that looked simple.  Simple enough that I thought, "I could throw that together after work one night."  But once I was in the middle of it, it was a little more work than I'd anticipated.  That's what I get for skimming the recipe, huh?

It involved browning hamburger with diced onion and fresh garlic ... okay.   A little extra time needed to chop the garlic and onion but ... okay.   Drain.   Then you needed to add a can of diced tomatoes ... along with several spices including cumin, smoked paprika, Worcestershire sauce, and dry mustard.

I don't know when ... or if ... I've cooked with cumin before.  I can't lie ... there was a point when I was standing there ... lower back aching ... thinking,  "Ugh, who fucking cares about cumin!  Or Paprika!  Will anyone even notice if it's not in there?!"

But I got home early from work last night, so I took a deep breath and dove into the spice cabinet.  I measured everything out exactly as the recipe called for ... mixed everything ... arranged everything and then separately cooked up the glaze that was required ... and set the dish into the oven to bake.

I looked around the kitchen at the absolute mess that lay in front of me and thought, "Well, however it tastes, this was not worth it."   I was disgusted ... as I spent the twenty minutes of cooking time washing pans and spatulas and cutting boards, putting back spices, and wiping down the counter tops.  Seriously?  Why didn't I just make a Tombstone pizza?

Let me tell you why.  Because it was delicious.  Is this what comes from using cumin?  And paprika?  I mean nothing I used was exotic or advanced ... it was laughably simple.  But even Stoney said, "This tastes really good!"

So I've been thinking about the way I cook.   After working all day, it's really easy to throw together some hamburger meat and a packet of taco seasoning and consider a meal successful.   It was a simple recipe ... but the honest truth is that it did take some time.  So I know there will be some nights ... if not most nights, sadly ... that I'm too tired to stand there for 45 minutes to making something truly homemade.

But my eyes are opened ... spices are our friend.  It takes a little work ... but it is worth it.   The more you know ...

Colours of the world
Spice up your life
Every boy and girl
Spice up your life
Every boy and girl
Spice up your life
People of the world
Spice up your life

Spice Girls - Spice Up Your Life

PS - If anyone cares (and since I think I'm down to about two readers, I don't think anyone will) ... here is the recipe I made last night.  They're called Diamond Burgers a/k/a/ Cheesy Burger Sliders ... but be warned.  When you're scrolling through the main picture directions, they skim over the cumin, mustard powder, etc. ... you don't really see the spices until you read the ingredient list and steps at the bottom.  

For what it's worth, I used King's Hawaiian Rolls ... which are naturally sweet.  Perhaps not the perfect choice since the glaze you're going to put on top has brown sugar in it ... so mine tasted sweeter than intended, I think.  Plus I used smoked provolone as the cheese ... because I thought that sounded good?  Anyhow ... give them a try.  They were really tasty!


Monday, March 21, 2016

... And Knowing Is Half the Battle ...


So it started this weekend at Prompt Care.  We were back again ... bronchitis or a chest cold or whatever ... it was soundly kicking my ass and Stoney lovingly bundled me up and drove me back for more medicine.  After seeing the doctor, I stopped at the bathroom because ... well, because I've never been in the vicinity of a bathroom I didn't want to visit.

I had the initial thought, "This bathroom smells good.  Very clean."  Of course, it was very early and probably hadn't been used much that morning.  But as I washed my hands I considered ... "This would be a good place to hide during a zombie apocalypse."

I have these thoughts occasionally.  Not daily by any means ... but probably once a week at least?   I"ll see an office building with a reinforced fence and think, "That would be a nice feature."  If I'm at a store and see a display of air mattresses, I'll think, "Hmmmm ... not the most comfortable in the world but it would do nicely."

In the bathroom of the clinic, I was ticking off advantages ... few windows, medicine, bathrooms ... plus there's a sleep center on site which means beds and showers.  It only took a moment to realize the issue would be food ... other than a few dozen muffins at the coffee counter, there wouldn't be anything edible.  Fine ... mental line through that option.  In case of a zombie apocalypse, the health care clinic is not a good choice.

The thought came to me again as we stopped at Walgreens to fill my prescriptions.  I saw the high windows and again thought, "Few windows, medicine ... and food!  No bed ... or anything that could substitute for a bed ... hmmmm ..."

These are the things I think about it.  No, the zombie apocalypse is not going to happen ... but if it does?  I'll have a leg up ...

Oh, a storm is threat'ning
My very life today
If I don't get some shelter
Oh yeah, I'm gonna fade away
War, children, it's just a shot away
It's just a shot away
War, children, it's just a shot away
It's just a shot away

Rolling Stones - Gimme Shelter

Friday, March 18, 2016

The Fat Girl Lives ...


So, I've discussed my lack of appetite, irony intended, ad nauseam ... and now I've discovered what's been missing.  Taste.  The taste has been gone.  I just didn't know it.

Oh, but I know it now.  Thank you, Prednisone ... you viscous, insatiable bitch.

About a week ago, I felt that familiar heaviness in my chest.  Breathing became difficult ... and within a few days, I felt like death warmed over.  Everything hurt.  Every bone and muscle.  And it felt like a gorilla was relaxing on my chest with the remote control.  A trip to prompt care confirmed that care was needed ... but it was just viral.  Therefore, no antibiotics were issued ... but a prescription for cough pearls was written along with a "burst dose" of Prenisone.

What that means ... you start high ... and immediately taper.  Three days of three pills ... three days of two pills ... three days of one pill.  And I can't lie ... it helped almost immediately.  Stoney took me in first thing in the morning and I barely felt like walking ... but by the afternoon, with three Prednisone in me, I was able to get up, take a shower ... even watch the Walking Dead.

Oh ... but there's a price.  There's a price in Prednisone.  First off there's the law of diminishing returns.  That burst I felt in the beginning was a little less the next day ... followed by less ... and less still.  Now I can't really say that I felt anything when I took today's two pills ... however, they warned not to stop taking it without the weaning steps.  But worse than the lack of improvement ... is the return with a vengeance of my appetite.

I'd forgotten the taste of food.  It's not just any food ... it's the same old favorite fat foods from thirty pounds ago.  It's the seasoning.  Monty's submarines ... that bread ... soaked with mayo and Italian dressing.  It's like some kind of heaven.  A Taco Gringo sancho tasted very close to ambrosia ... just ... unimaginably good.  Yesterday I chugged a large sized tart lemonade in less then ten minutes.  A week ago, that would've been unthinkable.  Not even physically possible.

In five days, I've gained four pounds.  Oh, and let me tell you ... it feels like it.  It's not like, "Oh, I didn't even notice!"  Sweet Christ, yes ... I've noticed.  My fingers are tight with fluid ... I feel ... swollen.  Too much fluid.  I took two water pills today ... and I'll continue to take extra this weekend.  But I won't be able to tell if it's helping for at least a day or two.

This is not catastrophic.  Tomorrow I'm down to one pill ... and that's only for three days.  So this will pass.  In fact, today I've made a conscious effort not to eat ... to drink water and to be aware of what I'm putting in my body.   But it's depressing ... to know that the dialysis nurse was right.  It's still there.  That unhealthy craving for taste ... seasoning ... fat ... salt.  

The kidney appetite issues made me weak ... but I can't lie.  It felt good not to have that constant almost unconscious thought, "What could I be eating now?"

Ridin' into town alone
By the light of the moon
I'm looking for ole' Sukie Jones
She crazy horse saloon
Barkeep gimme a drink
That's when she caught my eye
She turned to give me a wink
That'd make a grown man cry

Aerosmith - Back in the Saddle Again

Thursday, February 25, 2016

Now?


So you come to this point where you have to make a decision.  Dialysis is inevitable.  It's all a matter of when ... and weighing quality of life versus the inconvenience of treatment.   If we didn't have a trip planned, I'd sign up right now.  The fatigue is overwhelming ... the nausea comes and goes so much.  It's disheartening.

So you wonder ... is it better to go ahead and start treatment ... and feel better for the trip?   Weighing that against the fact you'll have to take the machine with you ... and have the fluid shipped to the hotel ahead of time.  I'm not an outdoors person but I would like to have the option of sitting on a beach ... and I don't know if that's something I can do with a PD port?

I'm a stubborn person ... and I've always felt I can push through almost anything.  But the last few days have been hard ... and so I wonder if it's time.

I really don't want it to be time.  If I could just have three more months? 

That doesn't seem like a lot to ask ...

Tonight I'm gonna have myself
A real good time
I feel alive
And the world
Is turning inside out Yeah!
I'm floating around in ecstasy
So don't stop me now
Don't stop me
'Cause I'm having a good time
Having a good time

Queen - Don't Stop Me Now

Wednesday, January 27, 2016

ALL The Food ...


Okay so ... part of the whole kidney failure thing is a lack of appetite.  It is the weirdest thing in the world ... I have no idea how to describe it ... but I'm going to try. 

I've been told that foods will eventually take on a metallic taste ... but I don't have that yet.  No ... right now it's this bizarre combination of a complete lack of interest in any food and an almost instant feeling of fullness.

For a fat girl, it's a new sensation to have no interest in food.  I've been heavy most of my life because I genuinely enjoy food.  I'm not a foodie.  I have no interest in goat cheese or chimichurri or anything involving the word "infused."  I'm from the Midwest.  I was raised to enjoy a good filet ... BBQ ribs ... cheese ... mashed potatoes ... pasta.  I'm fat for a reason ... because fat tastes good.

So to have this complete apathy towards food ... especially later in the day ... is foreign.  What do you want for dinner?   Ummmm ... [insert gap here].   There is no answer because there is almost nothing I want.  There are things I can make myself eat ... but even that is constantly changing.   I'll have a taste for Raisin Bran and eat a bowl twice a day for a week.  Then ... poof!  My tolerance for that is gone.  I'll want nothing but salads?  Then that taste disappears.  I'll crave shrimp dip ... and only want a handful of chips and dip for dinner for a week.  Then ... poof!  It's gone too.

In my head, living next to that dysfunction, is the polar opposite.   I'll occasionally want something ... really want it.  I'll think to myself, "I am going to order that 16 oz ribeye and I will eat every bite of that steak!" or "I want a pie. No ... I want all the pie!"  I smell something and I remember the taste and I can feel that taste in my head.  But in every single one of these cases, I'll have a bite (or two or three) and be done.  Completely done.  There's no pushing past it ... when done hits?  You're done.

This conversation between Stoney and myself happens weekly:

S:  What do you want for dinner?
T:   I don't know ... nothing.
S:   I guess I'll eat leftovers.
T:   Okay - I'm going to make chicken wings.
S:  Okay - I won't eat much cause
I'll eat whatever you don't finish.
T:   Don't plan on eating my wings.
I'm eating ALL these wings.
S:  You're going to eat five ... maybe.
T:  No I'm not! 
I'm eating ALL THESE WINGS!
S:  Sure you are.
Ninety minutes later:
T:   Um ... honey?
S:   How many did you finish?
T:  Five.
S:  How many did you cook?
T:  About a pound.
S:  Sigh ... hand them over.

Stoney is very understanding ... if a little frustrated ... with the constant, ever-changing meal requirements.  I'm currently on a kick where I want to drink gallons of black-cherry lemonade ... when that taste leaves, I'll never want to drink it again.  But in the meantime, I'm making pitcher upon pitcher of it.

The third, and most frustrating, problem is that rarely (very rarely) there is a window where I do want to eat and can eat.  Today, for instance, I wanted nachos for lunch ... so I drove to Taco Gringo.  Now, I'm optimistic but not an idiot ... so I bought a small order ... and ate probably 75% of it.  This should be a good thing, right? 

It's not ... because I feel awful.  When I do eat real food ... for instance when I went to a steakhouse with my mom on Sunday and had a few bites of steak and a potato ... I wind up feeling terrible.  It's a vicious,  never ending cycle ... apathy ... hunger ... nausea ... fatigue.

And ... let's be honest ... sadness.  Sadness because I miss enjoying food.  That fat girl is still inside me.  Well, that fat girl is still everywhere.  I'm losing weight all the time ... but I'm just slightly less fat.  But I can tell ... the personality flaw that landed me at Lane Bryant will keep me there forever.

They tell me that once I start dialysis my appetite will come back ... and it will come back with a vengeance.  They say "rebound weight gain" is a common thing because people can actually eat again.  And since that fat girl is still in my brain thinking, "I want ALL the chicken wings!" ... I can only imagine this rebound will be an issue down the road.

In the meantime ... my back aches like hell ... my head hurts ... and I'm left wishing I would've stuck with dry pretzels instead of nachos.  Sigh ... tomorrow's another day.

PS - Do you watch Shameless?  You should ... and because of Shameless you should listen to "The F Word" ... trust me on this one!

When I was young
I remember
I was taught not to say the F word
I guess I forgot
As a grown man with an open heart inside
I got married to the F word
And my heart slowly died
F is for Fiona
With her fists of flaming fire
F is for Fiona
I felt like I could fly
But then fucking Fiona
Was fucking everyone
Fuck you Fiona
Cause now I'm fucking done



Monday, January 18, 2016

I Know What I Know ...


So, in the interest of full-disclosure, I know almost nothing about sports.  I find it amazing that every day Mike and Mike have something else to talk about when it comes to sports.  Those two guys are on every morning discussing every aspect of every sport ... it's mind boggling.  I fully expect to wake up one morning and this conversation:  "Did you SEE that badminton game last night?"  "Oh man ... that shuttlecock was CLEARLY out of bounds."

Note:  See what I'm talking about?  I know nothing about sports.  I don't know anything about badminton.  Does anything in that game really land out of bounds?  I don't know.  I just wanted to make a joke involving the word shuttlecock.  Shuttlecock.  HAH!  Mark THAT off the bucket list!

However, despite my impressively tiny knowledge of anything "sporty ball" ... I am picking up a few things through osmosis.  Stoney's house ... pardon me ... our house .... has five televisions.  Why is this impressive?  It's a two bedroom home. There's a large television in the living room ... a small one in the kitchen ... a nice size in the master bedroom ... and the final two are in the spare bedroom and basement.  All are fitted with Direct TV receivers and/or DVRs ... and, on any given Sunday ... all are tuned to ESPN. 

Okay, so you're thinking to yourself ... this house sounds like some sort of Elvis-esque Graceland circa 1974.   While I think shag carpeting on the ceiling sounds delightful ... I, unfortunately, have to burst your bubble.  If Stoney isn't currently in the room, that television is typically on mute ... and mainly it's set up this way so he can go room to room doing various projects and also watch the game, in essence, seamlessly.

My point in sharing this is that, when you live in an environment like this, you're bound to pick up a little knowledge.  I've learned the names of most of the teams ... Pittsburgh is home to the Steelers, for example.  I can recognize a small handful of players ... Payton Manning likes chicken parm.  And I know a few basic things about the game itself ... for example, everyone should always throw the ball to Dez Bryant.

Now the bottom line is that I don't have any opinion or preference about any of this knowledge.  Except chicken parm ... mmmmm ... chicken parm.  But I don't have a preference for any team or player ... I don't care about who wins or loses.  As far as sports go, as a whole ... I don't care.

Except for Tom Brady.

Tom Brady is a lying, cheating pussy.

 I believe, in life, it's usually never about the sin ... it's about the coverup.  Admit to what you've done and the world will move on.  Unless you're Tom Brady.  If you're Tom Brady, you get caught ... you get a punishment ... then you whine and cry and stomp your feet until someone says, "Aw, that's okay, Tom ... you can play in the reindeer games.  Here ... dry your tears, lil' buddy ... have a cookie."

Fuck that.  Fuck that hard.  Be a man, Tom Brady.

That's pretty much all I care about in sports.  Tom Brady is a lying, cheating pussy.  And chicken parm ... chicken parm does taste so good.

I'm not aware of too many things
I know what I know, if you know what I mean
Philosophy is the talk on a cereal box
Religion is the smile on a dog
I'm not aware of too many things
I know what I know, if you know what I mean

Edie Brickell and The New Bohemians - What I Am

Edited to Add:  I forgot to mention something.  I do know enough about sports now that I came up with the sweetest name for a fantasy football team ever.  Good Will PuntingGet it?  Like ... Good Will Hunting ... but ... punting ... like football?  Those skinny little dudes that kick the ball?  Punting?  HAH!  Common ... that is an awesome name, right?  Stoney says he doesn't use "cute" names like that unless it's basketball or baseball ... but that's okay ... because then it becomes ... Good Will BUNTING!  Goddamn ... I am like a sports genius over here!!


Friday, January 15, 2016

Always Another Baby Step ...


It's odd how our perceptions change.  How something that is completely unacceptable one moment can morph into something that seems perfectly reasonable.

I've always hated writing about health stuff here. It feels like whining ... like begging for sympathy from a world with people who have lives so much harder than mine. I've even considered starting a second blog JUST for my kidney issues ... but common.  I don't have enough energy these days to post here.  Why start a second blog to be ignored and neglected?

So there are two types of dialysis - peritoneal dialysis using a stomach port and hemo dialysis using a fistula on your arm.  Okay, yes there are technically more options ... if you find yourself in the ER with kidney failure, they can (and will) shove a catheter into the side of your neck and dialyze through that type of port.  But we aren't discussing catastrophic situations here. 

I'd decided on peritoneal ... it doesn't involve blood or needles and I was under the impression you did exchanges while you slept.  In my mind, I'd imagined hooking myself up before bed ... and unhooking myself in the morning.  Simple, clean, and it wouldn't involve anyone else having to be a caretaker.  That's an issue with me ... something I really wanted to avoid.

But apparently I was mistaken. Peritoneal DOES allow you to do dialysis without working with blood or needles ... but it involves MUCH more time. Ten to twelve hours of time.  What that means is that, for many people, you go home ... hook yourself up at seven o'clock ... and then unhook yourself at seven o'clock the next morning. Twelve hours. Every day. For the rest of your life.

I'm numb with the thought.  I don't even know how that fits into a normal lifestyle. So you can't ever do anything at night for the rest of your life?  The surgeon told me that there's wiggle room ... if we wanted to go to dinner and a movie on a Friday night, that was fine. I could hook myself up at ten o'clock with no problem. But then I couldn't unhook myself until ten o'clock on Saturday.  How would you travel?  How would you have friends over?  I'm still heartbroken.

And so ... it was a short hop from "I won't work with blood or needles" to "I won't tie myself (or us) to the house for twelve hours every day."

So now I'm considering hemo dialysis. Unfortunately, that type, once again, involves blood and needles. Maybe that should be the name of my new, kidney-related blog?  Blood and Needles or (My kidneys Are Trying To Kill Me).

So there was a hop ... from peritoneal dialysis to hemodialysis ... and once you're there?  Once you have no choice but to be there, what's another hop?  To go from in-center to in-home? 

With hemodialysis, you spent 3-4 hours three days a week hooked up to a machine that cleans your blood. You can do that in a center ... and a lot of people do.  But if you can learn to do the technical bits yourself, you can dialyze in-home.

So let's look at the choice ... to leave work and go to a center ... where I'll sit from five o'clock to nine o'clock ... three days a week.  Or two days a week if I can get on the Tuesday/Thursday/Saturday schedule.  If I could manage that, I'd just come home late two days a week and then spend Saturday morning at the center each week.

Or ...

Come home from work ... have dinner ... and then, two days a week, hook up and sit for three or four hours at home.  Watch a movie ... talk to Stoney ... watch the Goldbergs ... color ... crochet ... whatever.  Then maybe on Saturday or Sunday while Stoney watches football ... hook up and nap while I'm cycling?

Don't get me wrong. None of this is good. There are no silver linings and there's no, "But, hey at least there's THIS!"  It all sucks and it sucks hard.

The trick lies in finding which one sucks the least.

I have to talk to Matt at the dialysis center again ... he's the RN Who does the training. I have more questions ... more things to nail down in my head. And then I guess the only thing left is to get the fistula.  You can do that at any point ... but it takes 2-3 months for that new vein in your arm to grow strong enough to use ... so you have to start planning ahead for when that time comes.

And the time is coming. I'm holding it off as best I can ... but it's coming.

'Cause love's such an old-fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure 

Queen - Under Pressure

Friday, January 01, 2016

Everybody Needs Love ...


Happy New Year, everyone!  I haven't posted since August ... this might be a new record for me, as far as ignoring my blog goes.   As someone on Twitter speculated, my lack of output may be in direct proportion to my overall happiness these days ... and it's true ... I can't deny that's part of the equation.  But the thing that keeps me from opening my laptop each day isn't happiness ... it's my utter lack of energy.

My kidney function is down to 13% as of last week ... which puts me in Stage 5.  This isn't catastrophic.  I mean, it isn't optimal ... but it isn't catastrophic.  This is just the next part of the journey ... and it's alright.  It's hard to think ... hard to write these days.  I'm nauseous ... but there's medicine for that.  I hurt ... but there's medicine for that as well.  I'm tired ... but Stoney is sweet and he understands when I sleep for eleven to twelve hours and yet crave an afternoon nap.

Speaking of Stoney ... his love is the reason I wake up in the morning.  He is the reason I can't wait to come home at the end of the day.  He is the reason I smile.  If it weren't for him, I don't know how I would've gotten through this year ... hell, if it weren't for him, I don't know if I would've been able to sell the house.

It's wonderful to have a partner ... a partner who helps with everything.  I'm still not used to it.  We spent time with family and friends over five consecutive days over Christmas ... first a large group of our friends, then my mom, then more friends, then my girls, then all of his family.   Before the girls came over, we spent the day cleaning the house ... just the normal things people do like dusting and vacuuming and cooking.   And it hit me at one point ... I'm not doing this alone.   He's in there running the vacuum while I clean the kitchen ... we're a team.  A really good team.

My year has been wonderful with the house being sold and all the loose ends from my life before being wrapped up and topped with a bow.  Stoney's year has been great with a promotion and winning EOM last month.  We'll get to go on a trip with the other winners and, more importantly, he has a shot at employee of the year.  I'm so very proud of him ...

And so, we start 2016 on a good note.  I'm making my resolutions ... but I'm not stupid.  I realize I'm blessed ... and I'm so thankful that I get to wake up every morning with a kiss and go to sleep every night feeling loved.

Moon beams we can dream on
At the setting of the sun
And the stars we can wish upon
When the working man is done
Sunsets we could cry over
Have our trouble's on the run
But more than these miracles above,
Good people, we need love
Everybody needs the love, love, love
Everybody needs the love, love, love
Everybody needs the love, love, love
Just like they need the sun and moon and stars up above

Drive By Truckers - Everybody Needs Love

Wednesday, August 19, 2015

My Sun and Stars ...


Nothing comes from nothing
Never ever could
So somewhere in my youth
Or childhood
I must've done something good

If the song is right, I'm not sure what I did in my childhood ... but it must've been spectacular. Because one week ago yesterday, Stoney made me the happiest girl in the world when he asked me to marry him.

We were texting at the end of the day on August 11th, when he asked if I wanted to go to dinner.  It was a Tuesday ... which used to be "Tuesday Date Night" when we first started dating ... and he suggested Red Lobster. Do I wanna go to Red Lobster?  Common ... who doesn't want cheddar biscuits and shrimp scampi?  We had a delicious, if slightly unorganized, dinner ... and rode home together laughing about everything from the flaky waitress who kept disappearing to my refusal to park more than 50 feet from the door of my office.

Once we got home, he said he needed to use the bathroom.  Meanwhile, I wandered around the kitchen doing this or that.  At this point, I should tell you ... we have a smallish white board hanging in the bathroom. I like to leave Stoney little notes or doodles on it.

So anyhow ... as I'm standing at the table with my back to the hallway, I hear Stoney say, "The white board in the bathroom fell down."  I didn't turn around but answered, "Aw, that sucks ... now I can't leave you messages."  He said, "Yeah, it fell ... so ... look at it ..." and I turned around to see ...

Stoney standing holding the white board.  He'd taken the markers and written, "Will you marry me?" on it ... and was holding out a ring box with a beautiful ring inside.  I stared at the white board and said, "Really?  Really?  SERIOUSLY?!"  

I hugged him and he handed me the ring box.  I slid the ring on ... which fit perfectly ... and then threw myself at him again.  After a minute or two, he said, "Um, technically, you haven't said yes ..." I corrected the situation by saying yes many, many times!

Everyone has been so excited for us ... everyone wanting to know a date ... some wanting to know where we'll register ... the girls cheering us on and wanting to know if we'll be going to next year's bridal expos ... and one friend even wanting to know what color of dress she'll be wearing.

We were both so busy with work last week that there wasn't a lot of time to relax and celebrate ... but I've tried to take a minute to stop every night and thank him for my ring and tell him how happy I am.

I don't have enough words to say how lucky I feel.  Lucky that I met him ... lucky that he asked me to that Springsteen concert ... lucky that he didn't see the basement in my house and run screaming for the hills ... just lucky that he chose me.

I love you, hon ... and I know this is Ben and Becca's song ... but I'm borrowing it because it couldn't be more true.


I don't get many things right the first time
In fact, I am told that a lot
Now I know all the wrong turns the stumbles
And falls brought me here
And where was I before the day
That I first saw your lovely face
Now I see it every day
And I know
That I am
I am
I am
The luckiest

Ben Folds - The Luckiest

Wednesday, July 22, 2015

Learning To Fly ...


I had a realization last night.  Most everything I fear right now is about me.  It's a problem with me.  Not with the world ... or my Mom ... or Stoney.

Just me.

So here's the thing ... at this very moment, Stoney is on his way to a job interview.  The details don't matter ... I'll just say that it's five hours away and with a prestigious company.  When all of these opportunities started coming up a month or so ago, he asked if I would move with him and I said yes.  And I meant it.

But, honestly, I was sick with worry.  We have to finish selling my house.  We'd have to sell his.  I'd have to get a new job there because I need health insurance.  On top of all that ... I'd be leaving my mom.  She's seventy two ... and just the fact that I'd be leaving her weighed a lot on my mind.

But last night it came to me.  I get it.

The fears I have are deeper than that.  That stuff above is all surface stuff.  What I'm scared of is what's underneath.  This situation requires trust.  Not just trust that we'll be a good team and be happy together in another state.  That's not an issue.  We're good together and I enjoy just being around him.

No ... it's trusting that I won't be the only one working.  That I won't feel alone all the time.  It's trusting that I can depend on him ... because the bottom line is that we'll be depending on each other a lot more there.  Last night it came to me that I'm hauling around a lot of baggage.  Baggage that has taught me that when someone says, "Trust me, I'll take care of you ..." that when you desperately need them?  That person will be gone.

So yes ... I am worried about my house.  I am worried about money because I've just about spent all mine trying to get it ready to sell.  I'm worried about selling his house.  And yes, I'm worried about my mom.  We talked about it tonight and she knows what is going on.  She says she's alright with it ... but I know she's scared too.

All of that is true.  But my trust issues?  That's on me.  That's something I have to fix.  Years ago, when I was scared to even ask Stoney to go out with me, K told me, "Fix this shit."  And she might as well have been sitting with me ... because I heard her voice telling me, "Fix this shit."

My cousin, T ... whom I've written about many, many times ... loved adventure.  And if he were here, he'd be telling me to GO ... have FUN ... make this an ADVENTURE.  Before he died, T told me not to make Stoney pay for the things someone else did that hurt me.  And I'm thinking this trust issue?  Is doing just that ... and it's not fair.

I'm feeling better about the whole thing; although, I'm not trying to make this about me.  This is a huge thing for Stoney.  He's on his adventure right now.  But he's smart and amazing ... he'll do great at the interview, there's no doubt about it.  So if it's meant to be ... it's meant to be.  I love him.  And I'll love him in Illinois or Ohio or Iowa ... anywhere.

Good luck, baby ... although I know you don't need it.

Into the distance a ribbon of black
Stretched to the point of no turning back
A flight of fancy on a windswept field
Standing alone my senses reeled
A fatal attraction holding me fast how
Can I escape this irresistible grasp?
Can't keep my eyes from the circling skies
Tongue tied and twisted Just an earth bound misfit I

Pink Floyd - Learning To Fly

Friday, June 26, 2015

Seriously Ask Yourself ... How's It Hurting YOU?


Years ago, it used to be common to hear me ask, "How's it hurting you?"

It was my go-to response whenever anyone was complaining about a situation.  I would say, "Seriously ... HOW is it hurting you?"  If it's not actively harming you or affecting your life?  Shut up about it.

Today, I'm reading all the responses on Facebook about the Supreme Court's ruling on gay marriage and I can't help wanting to open my window and shout to the world, "HOW IS IT HURTING YOU?"

As far as I know, George Takei isn't advocating the creation of a task force made of gay people whose only job is to go door to door and force you to marry someone your own sex. 

Seriously ... don't agree with gay marriage?  Don't marry someone your own sex

Problem solved!

To any men upset with this ruling:  The Supreme Court didn't make it mandatory for you to suck a dick.

To any women upset with this ruling:  No one will force you to eat anyone out ... I promise.

All today's ruling means is that gay people will now get to do what you, as a citizen, have always been able to do.  See how ridiculous that sounds?

Think back to when it was illegal to marry outside your race.  Could you imagine someone telling you, "You're not allowed to marry her ... she's black!"  Of course not ... that sounds barbaric.  Hopefully fifty years from now, this will seem just as ludicrous. 

"Wait ... Adam is marrying Steve?  Big fucking deal."

I don't know if I'm ever going to get married again ... but you know what?  That's an option for us.  No one will judge us whether we get married or whether we don't.  That choice is completely up to us.  But what makes me elated is that there's a couple ... somewhere out there tonight ... who is  overjoyed because they can now make a choice ... a choice that I take for granted.

Sometimes we do something right.  Today, we ... as a people ... did something right.  There are historic records of people saying that interracial marriage was a sign of the downfall of our nation.  Do you want to be that person?  The person our grandchildren and great grandchildren look back at with shame?

I deeply love someone ... and I would never deny someone else the happiness I feel. 

So ask yourself ... how is this hurting you?