Monday, September 18, 2017

Chicago Is Made For Lovers ...

Note:  I wrote this post last night during a dialysis session ... which I think may explain the "poor me" aspect of the story.  I'm sorry about that.  Unfortunately, it's all true ... but it is very much a pity party.   Some days are harder than others and I think we've discovered that when I get too tired (or overheated, etc.), I tend to get emotional.  Stoney deserves more credit than I can ever write here because he pushed himself to the limit this last month ... the whole roller coaster transplant thing, walking long distances to get the car up in Chicago, staying up late driving while I slept, etc.  So thank you again, hon.  You really are the "better" in the term "better half."  And now, back to our story. 

Do you know someone with a chronic disease?  You might ... and might not even know.  A lot of us look normal.  We look "relatively" healthy.  I wish I had a dollar for every time someone said, "But you don't LOOK sick!"

So, last weekend, we planned a trip to Chicago.  It wasn't anything heroic.  Stoney drove us to Joliet after my dialysis on Friday and we stayed at a nice hotel right off the highway.  The next morning, we visited Shedd Aquarium ... which is stunningly beautiful, by the way, if you haven't been.  I didn't touch the stingrays ... #NeverForget ... but, even still, the exhibits are gorgeous.

After a nice relaxing walk through the aquarium, we went to Portillos for lunch.  It was Stoney's first time ... and I think he enjoyed it.  Their Italian Beef is sooooooo delicious.  I've tried to watch what I eat because of the transplant list situation. But I'm not going to lie.  I was a little pig!  Other than the little piece I gave Stoney to try, I ate my entire sandwich ... and I would've licked the paper if we still weren't in the honeymoon stage. Hell, give me a couple more weeks of wedded bliss and I'll eat mine, his, and anyone else's in arm's reach!

With full bellies, we drove over to Miniature Moose's work to surprise her. Hah! Jokes on us ... she had the day off.  So I texted her a photo of her coworker selling us popcorn ... and we were off to the big event.  Cubs and Cards at Wrigley Field!   And who got the biggest surprise?  She was already at the park with her mom and aunt!  She came and found us and sat with us the first half of the game.  Stoney bought me frozen lemonade ... and Mini Moose shared it with me while the three of us cheered the Cubs.

Okay now.  Whoa.  Let's stop right there.   That's just not true.  My love is a Cards fan ... so he was a good sport ... sitting patiently while everyone around him lost their minds.  He deserves tickets to Busch Stadium as a reward for that kind of self control.

So ... that's what everyone knows.

What everyone doesn't know is that I fell apart.  Just that stuff up there?  That took more spoons than I had. Walking around Shedd's was perfectly fine (although we still had to sit and rest) ... but there was no way I could walk from the parking garage to Wrigley Field.  Stoney dropped me off and then walked by himself to find me in front of the gates.  There's no shade on Addison ... so by the time he got to me, I was overheated.

See, our kidneys regulate a lot of things besides urine.   Temperature, for example.  I was so very hot ... and exhausted.  Stoney got me to our seats and then went to the first aid station and got a cooling pack.  He got us water and frozen lemonade to cool my body down.  I tried to be as normal as I could in front of Mini Moose, but Stoney could tell things weren't right.  My legs buckled during the national anthem ... so I just leaned against Stoney and prayed the guy would just STOP singing.  And after Mini Moose went back to sit with her mom, I just leaned my head on Stoney's shoulder and tried to think cool thoughts.  Every once in a while there was a breeze and it was Heaven.

Stoney offered to leave just before the seventh inning stretch.   I'm aware that I should've said no.  I shouldn't have been so selfish ... it was his weekend too.  But I wanted to sit in our air conditioned car SO bad.  So I said yes and we headed out ... but we were in the same spot as before.  The parking garage was so far away.  So we walked as far as the police station ... just to get away from the Wrigley crowds.  Stoney sat me on bench just outside the precinct door with a fresh bottle of water and went to get the car and pick me up.

And as soon as he was gone, I started crying.  There was this heartbreaking combination of guilt for ruining the trip ... of frustration for not being able to do something as simple as walking to our car ... and sadness that I couldn't push any farther.  I sat there crying ... looking like a clinically depressed hobo.  And it hit me ...  "Pull yourself together.  You're outside a police station.  Someone is going to see you.  This is going to become a thing.  Stop it now."

And so I got it together.  Stoney picked me up and we headed out of town.  And I was relatively alright until we stopped for dinner at a McDonald's south of Joliet.  We were having a snack and talking about the day ... and I lost it all over again.  This time it was just the overwhelming guilt that NORMAL people can do this.  That Stoney was changing all this stuff because I couldn't make my body do what I wanted.

And here is where I tell you how great my husband is.  Not one single time did he say stop that ... or don't cry ... he just came to my side of the booth and held me.  He let me sob into his Cards jersey.  He said he knew it was frustrating ... but that it was alright.  He talked to me about the transplant team ... and how someday we could do it all.

And we sat together in a McDonald's booth outside of Joliet ... holding each other and ignoring everyone else around us.  He made me feel better ... like he always does.  I STILL feel guilty for not being able to be like everyone else.  I probably need therapy at this point.  But we had a good time when I wasn't a mess. And when I DO get that transplant, I'll make it up to him.

Portillo's is on me, hon ...

Six and three is nine
Nine and nine is eighteen
Look there brother baby
And see what I've seen

Hidehey
Baby don't you wanna go
Back to that same old place
Sweet home Chicago

Blues Brothers - Sweet Home Chicago

Thursday, September 14, 2017

Mellon Collie and the Infinite Sadness ...


So, just a little over a week ago, I got "the call."   Well ... not at first.  The transplant team called me on Tuesday the 5th around noon to tell me I was, once again, the backup.  Which was fine.  I didn't have a tingle ... nothing telling me that my life was about to change.  So I agreed to not eat or drink anything ... and I just kept on working.

On the drive home, they called back.  The surgeon wanted to talk to us.  He explained where the kidney was coming from ... a 19 year old girl.  He explained why it was available ... tragic car accident.  He explained that it was high risk kidney ... the "capsule" had been removed around it.   At the end of the call, he invited me to come to the hospital and meet with them.

And so we did.

At six o'clock pm, Stoney, my mom, and me all met at the hospital ER and let them know I was there for a transplant.  We told a few people ... mainly bosses and necessary co-workers.  We didn't want to leave anyone out ... but there's no guarantee that this was going to happen.  It's a long process.  It's a really long process.  They took us upstairs to my room and the tests began.  A chest-x-ray ... an EKG ... 15 vials of blood ... endless questions.  We sat there for almost four hours going through the hoops.   We met the surgeon and he was a pretty awesome guy.  He just sat down and relaxed ... and just talked to us.  We really liked him ... he seemed to really like us. 

And then it looked like it was going to happen.  Like it was really going to happen.

We put it on Facebook.  I got phone calls ... I talked to the girls ... more texts went out ... phone calls to various family members were made.  And at a little after 10:00, I said goodbye to my mom and Stoney ... and they wheeled me out the door and down to a prep room for the OR.  I can't describe the overwhelming amount of adrenaline that was going through me.  I was sitting alone in a wheel chair in the OR hallway ... pushing myself back and forth with my feet ... making a circle from one end of the hall to the other ... humming some song.  I must've looked maniacal.

They finally took me into the prep room and the anesthesiologist came in and placed my IV.  She gave me my first dose of anti-nausea medicine and was getting the "relaxation" shot ready.  That's when the word came back ... everyone hold up.   The surgeon was examining the kidney.   The nurses were overly cheerful and told me this was "completely normal."  They assured me that the surgeon always did this and things would begin shortly.  The anesthesiologist left.  No one had to tell me ... that was a bad sign.

The surgeon came in to tell me something horrible had happened.  Whoever harvested the organ had damaged it almost beyond repair.   He drew me a picture ... showing me the way the kidney SHOULD have arrived versus the way it HAD arrived.   It put a hand on my shoulder and told me was going back into the OR to try and make it usable.  Out in the hallway, I overheard a nurse nervously ask him if she should get my family.   He told her yes ... he didn't want me alone.   No one had to tell me ... that was also a bad sign.

And so Stoney and mom came in and I repeated what he'd told me ... unfortunately, without the aid of helpful drawings.   They hugged me and he we sat and waited.  And we waited.  And we waited.  And we waited.

Mom nervously talked.  Stoney held my hand.  The surgeon worked for two hours in the OR.  And when he finally came in, he looked utterly heartbroken.  He took out his drawing and showed everyone all over again.   Everything is fuzzy ... but I believe he told us, "I'm a surgeon and my hubris wants me to tell you I can do this.  I can make this work."  I told him whatever he thought was right ... I told him I trusted him. 

My mom spoke up.   She asked, "If you had a daughter, would you give her this organ?"

My surgeon paused paused.  He paused for a long time.  And, as Stoney says, that pause said it all.  When he finally spoke, he asked if dialysis was working for me.  Was I doing alright?  I said I was ... and he said, "I can put this kidney in ... but it has a two to five times greater risk of clotting.  If that happens, it's deadly and it has to come out.  Then we're starting this all over with you in a much weaker state."   By that time, it was after two o'clock ... and we called it. 

It was over.

They took me back upstairs to take out my IV and put my discharge papers together.  I probably owe everyone an apologize ... Stoney, Mom, and any nurse who saw me on the 5th Floor.  It was the middle of the night.  I hadn't had anything to eat or drink since noon.  My blood sugar was low ... I was exhausted ... and I just couldn't anymore.  We walked back out to the parking lot together.  A sad trio ... not talking much.  Stoney offered to buy me something from Hardees since they're open 24 hours ... he even offered just to get me a root beer.   But all I wanted was to go home.

I don't remember anything after that.  I don't remember getting home or walking in the door.  I don't remember getting undressed or texting my boss that I wouldn't be in.  All I remember is holding it together until I could crawl into bed ... and then just falling apart.  Stoney held me and rocked me and said every single thing I would want him to say ... and, in retrospect, he had to be hurting almost as bad as me.  It was a horrible night for everyone.   He was up for hours ... he didn't have dinner ... and, even if it had worked, he wouldn't have had a new kidney.  He was running on empty just as much as me.

But we held each other ... and you can only cry so much.  Eventually, around 3:30 in the morning, we just fell asleep.   And when I woke up, I was every bit as depressed as I was when we left the hospital.   We'd both taken the day off work ... which was good since I didn't even wake up until eleven o'clock.  I couldn't bear to get on Facebook.  I didn't even look at my text messages.  It didn't matter whether they were congratulations or messages of sympathy, I couldn't bear any of it.   So Stoney was my rock ... he talked to everyone.  His family ... my family ... our friends ... everyone.  He was social when I couldn't be.

Stoney offered to make something to eat ... and I asked if he would just take me to IHOP.   I got dressed.  I had bacon.  Which helped a little.  And as soon as we went home, I went back to bed.    I don't remember the rest of that day or night.  I don't know what I said to anyone or what I did.   I think I ignored everyone.

And so it's a little over a week later.  The melancholy has passed.   I think I'm back to the old me?   I'm going around making up stupid songs for everything I do so ... that's got to be a good sign.  

But now I'm dreading the next call.  I don't know whether I could go through that all again.  I don't want to go through all that again.  It's not just a matter of being the backup.   It was being outside the OR ... steps away from a new kidney ... and having that just pulled out from under you.  It's a horrible feeling.  I don't know if I've ever experienced anything like it.

But I guess when it's meant to be it will be.  That's what we tell ourselves, right?  

I'm not alone ... I've got the best person on the planet standing right next to me.  Everything's gonna be alright ... 

She feels safe now in this bar on Fairfax
And from the stage I can tell that
She can't let go and she can't relax
And just before she hangs her head to cry
I sing to her a lullaby
I sing
Everything's gonna be all right
Rockabye, rockabye
Everything's gonna be all right
Rockabye, rockabye
Rockabye
Shawn Mullins - Lullaby Lyrics

Thursday, August 17, 2017

You Bet I Do ...



One week ago tomorrow, I took the hand of my best friend in the world ... and became his wife.

I don't know what I expected of a courthouse wedding ... but this wasn't it.  First off, we were told we had the largest group of people the courthouse had seen in years.  The lobby was full ... the courtroom was full ... heck even the elevators were full!  And once we were done, we were standing around hugging and taking pictures ... when someone said, "Look out the window!"  About a dozen of our friends were standing down on the sidewalk, hooting and cheering and holding letters that spelled our names and congrats!

I expected the judge to be stoic ... but what he said was so heartfelt.  That we'd already found our soulmate ... this was just making it official.  We said vows surrounded by friends and family.  His parents, my mom, his brother and sister-in-law and nephew, my aunts and uncles, all three girls, and all our friends.  It was a beautiful day.  Everything I could've hoped for.  Oh ... and my ring is gorgeous.  Not that that kind of things matters but ... hey, my ring is brilliant!|


I can't say that I feel much different now.  I already loved Stoney to the moon and back down to the dirt ... this was just putting pen to paper and making it legal.  I could've lived with him forever and been perfectly happy ... but that's not the world we live in.  If something happens to me or him, the other person needs to be covered and in charge.  I think we're past the time when people couldn't visit other people in the hospital if they weren't family ... but still ... if anybody is going to be making decisions about me, I would want it to be him.


And even still ... I can't lie.  My heart sings whenever he kisses me on the head and calls me his wife. It's not just about the legality of things ... it's about making sure everyone knows that this is who you choose to be with ... this is your partner.  Stoney ... I'll spend my life doing everything I can to make you happy ... because you make me happy every single day.  I know every day won't be sunny ... there's bound to be some rain ... but as long as you're with me?  The world will be filled with rainbows and tacos!


Love is all around you, yeah
Love is knockin'
Outside your door
Waitin' for you
Is this love made just for two
Keep an open heart
And you'll find love again
I know

Doo doo doo doodoodoo
I know

Tesla - Love Song

Thursday, July 27, 2017

Hey, Baby ...


When I was young, I had a tendency to jump into things with both feet.  I was an adventurous soul ... which is a double-edged sword.  You have a lot of great stories to tell over drinks.  "... and THAT, my friends,  is how I ran Trent Reznor out of a bar in mid-town Manhattan!"  But you also have some dark things swimming around in your head that come up at the most inopportune times.

Everything we've done, both good and bad, builds us into the person we are today.  Each experiences adds another layer ... whether we want it to or not.  I feel like I have a thousand shiny, happy layers which has made me a happy, outgoing person overall.  But I've had things happen that made me deeply distrustful ... always inwardly cringing, expecting the other shoe to drop.  I was always an extrovert ... but honestly about five years ago, I became more introverted ... a little more suspicious ... and a lot more wary.

For two years now, Stoney and I have been planning on getting married.  We didn't have a date ... but he proposed with a ring and I always told people we were "working on it."  And I was.  In my head I was working towards getting comfortable with it.  It was never him.   He's always been a man you'd be lucky to get to marry.   It's just been me ... being scared.

See, I read this article years ago about how you shouldn't move into with someone until you've had a "knock-down drag out fight" ... so you'll have a glimpse at what the worst could be.  Well ... I drug my feet ... and we never had that fight ... and eventually I moved in anyway.   He proposed ... and I waited ... but we've never had that fight. 

This Christmas, we'll have been together five years ... and, while I know there have been times when I've irritated the piss out of him ... and, while I can't think of one off the top of my head, I'm sure he's irritated the piss out of me once or twice ... and I've kept waiting for the big bad to happen.  And it never did.

Nobody's perfect ... I can be lazy and messy at times ... Stoney can be pushy about said mess at times ... but I can't imagine anybody I'd rather spend my time with.   I love waking up on the weekends and going to find him ... I love going to sleep next to him ... I love cuddling in my spot ... I love laughing with him.  I still smile whenever my phone dings with a text from him.  He's my reason for doing for everything I do ... for hanging on when the cramping gets bad and the whole thing seems like more than I can bare.

He's been patiently waiting on me to be ready ... and I keep asking him, "Do you still want to marry me?" and he keeps surprising me and saying, "Yes."  

So let's do this, baby.   There's nothing that would make me happier ...

It's a beautiful night
We're looking for something dumb to do
Hey baby, I think I wanna marry you
Is it the look in your eyes,
Or is it this dancing juice
Who cares baby,
I think I wanna marry you

Bruno Mars - Marry You 

Thursday, July 13, 2017

The Second Call ... Who Does This?


So Monday morning, I was sitting at my desk with a new trainee.  We'd been talking about ten minutes ... barely getting started in the whole training process ... when my cell phone rang.

The Transplant Coordinator said she had an offer for me ... and here she hesitated ... "But I don't think this is the one for you.  This is a high risk kidney."

Now ... high risk can mean a lot of things.  When you first get on the transplant list, they ask if you would be interested in a high risk kidney.  They encourage you to say yes ... and tell you that, when the time comes, you can always say no without it being held against you.   About 10% of deceased donor kidneys are classified as high-risk for infection with HIV or with hepatitis B or C (HBV or HCV) based on CDC criteria.  To get tagged as high risk, the situation could be as serious as a drug user ... or as simple as just being a homosexual.

I told the coordinator that I was open minded ... to go ahead and give me the news.


A young 20 year-old man had just died of a heroin overdose.  They were offering me his kidney.  The kidney had been tested and already had decreased urine output and a higher than usual creatinine level.  She said it wasn't optimal ... but that legally she had to give me the choice.

I sighed and sat there shaking.  So much information in such a short period of time.  You're elated to be getting a call.  You're horrified that a young person just died of a heroin overdose.  You're sick to your stomach ... because you know you're going to have to say no.

The coordinator explained that I'm (relatively) young ... that I'm doing really well on hemo ... and that I haven't been hospitalized with issues yet.   She thought there was still time to get a better offer ... and I reluctantly agreed.  I hung up the phone so she could call the next name on the list ... and I walked calmly to the bathroom where I crumpled in a ball and cried.

I managed to text the news to Stoney ... who called me just as I was pulling myself together and walking back to my desk.  He comforted me and said it was alright ... but I think he sounded just as "gut punched" as me.   Neither of us sounded sure of what we'd chosen ... but he surprised me and picked me up for lunch so we could talk more about it.

He's held me and told me over and over it was the right decision ... and my nephrologist and mother have strenuously agreed.   But I feel so guilty.   I turned down a kidney.   A young person died and I turned down his kidney.  It's just so terrifying.  If he took any other kind of drugs I would've thought about it ... but heroin?  How do I know if he shared needles?  If he had unprotected sex?   The kidney tested negative for HIV and HEP ... but those things can be undetected for months.  So months after a transplant, when you're taking anti-rejection meds and have no immune system left ... you could find out you have HIV?   How horrific would that be?

I've even hesitated to write this here ... because I don't want anyone to read this and think, "Wow, ThirtyWhat is STUPID!"  Because, believe me, I think that enough myself.  

But this is where we are.  Second call received ... waiting on the "real call."  Third time's a charm?

Mr. Telephone man
There's something wrong with my line
When I dial my baby's number
I get a click every time
Mr. Telephone Man
There's something wrong with my line
When I dial my baby's number
I get a click every time

New Edition - Mr. Telephone Man

Monday, July 03, 2017

The First Call ... May It Not Be the Last ...


You really don't know how it's going to feel when you get that call.  I imagined it, sure.  But to hear the words ... "This is Mary from the Transplant Team" ... it's both thrilling and terrifying all at the same time.

When you hear those words you realize how little you are prepared to hear those words.   I had a vague idea that we'd get the call and then go to the hospital.  When the call came in the middle of the night on Friday, I sat there worrying over all the work that was on my desk ... things that needed to be mailed or invoiced or just generally sent out.  I didn't have a bag packed to go to the hospital.   I wasn't ready at all.

Luckily ... or unluckily depending on your point of view ... the call wasn't "for me" technically.  I was the backup ... an understudy.  They had an kidney ... and they had a person intended to get that kidney.  But if that person showed up to the hospital and had an issue ... a fever or too many white blood cells or whatever ... then the Transplant Team would call me back and we'd go in.  The call was to let me know not to eat or drink anything ... and, in general, just to be ready.  They said they would call back in the next five hours or so to let me know whether or not I was cleared.  It's like being called for jury duty ... only it could save your life.

The call came at 1:30 in the morning ... so it wasn't like I was about to order a pizza.  But I might've gotten up and drank some water or milk or something ... so that was good to know.  But the problem is that the last thing you feel like doing at that point, is going back to sleep.  If it weren't for Stoney, I don't know that I would've been the backup at all.  My phone was on vibrate ... and I slept through two calls.  It wasn't until they called Stoney's phone that he woke up and realized what was going on.  I woke up to see him standing by my side of the bed, holding my phone, and telling me, "Call them back, quick!"

It was a work night ... and Stoney had an important meeting in the morning and had to drive to St. Louis.  Now what?  There was no since in cancelling anything ... I was just the backup and probably wouldn't get called in.  But we did need to get some sleep to function the next day.   I think we laid awake for at least an hour ... talking about what we needed to do.  How happy we were both were.  And we talked about how many conflicting feelings you have.  You want to hope they call back and tell you to come in ... but then you're hoping that someone else doesn't get it.  You want to be happy that this is happening ... but you get to be happy because someone else is crying over the loss of their loved one.  It's a spaghetti bowl of emotion ... just a mess of happiness and sadness and confusion.

Since I'm getting ready to go to dialysis this afternoon, they obviously didn't need me.  Mary called around seven on Friday morning to let me know that I was cleared to go to work ... to have breakfast and relax.  The odd thing was that I wasn't really disappointed.  I was happy that someone's life had changed that morning.  And I was happy because this was a sign that we are close to getting the real call.

I know I've been melancholy on here lately ... and so I will tell you the other side of this story.  Getting the call gives you a dizzying happiness that words can't describe.  I ran on adrenaline all day.   I was beyond elated.  But that wears off.  Sitting there at dialysis Friday night, the crash afterwards was hard.  Because you realize how close you came to not having to sit in that fucking chair.  Worse yet, Friday night was hard ... I cramped until I cried ... and then I cried because I almost didn't have to do this anymore.  And that stays with you ... that feeling of loss.  That feeling of ... "I was so close."

I guess it's very similar to the stages of grief ... because you do swing back around.  I'm now in relatively zen space ... my time will come.  I just have to keep eating healthy and keep my cell phone ringer on.  We'll get the call ... and hopefully soon I'll be on here writing about my Prednisone moon face and what it's like to be on every anti-rejection medicine known to man.  Stoney will have funny stories to tell about me putting off pain medicine and then crying like a lunatic because there are stitches touching my skin. 

It's alright ... we have hope ... and that's something to hold onto.

And it just makes me wonder
Why so many lose, so few win
And give me something to believe in
If there's a Lord above
And give me something to believe in

Poison - Something To Believe In

Thursday, June 29, 2017

I'm So Sorry ...


The spoon theory is real.  And it's frustrating and disappointing that, most days, what I can do is extremely limited by the amount of energy I can muster.   I'm proud that I still work full time while doing dialysis ... so many people don't ... but that means a large slice of that daily pie has to go towards my job.  I'm afraid friends and family and fun suffer these days.

David Sedaris tells a story about how your life is like a stove.  You have four burners ... work, friends, family, and health.  To really be successful in one area, you have to turn off a burner ... sometimes even two.  To succeed in business, some people neglect friends ... or family.    In my case, two of these burners have to be on ... health and work.  My third burner, family, is on ... but they don't get the attention they should. 

Stoney gets all my love and attention ... but he's right there.  I just have to reach out to hug him or hold him or thank him for everything he does.  My mom ... I call her every day and try to make plans with her every couple weeks so that she feels loved.   The girls ... well, we text and talk all the time but I don't see them like I would like.  They have busy lives and, again, when they are free, I'm usually too exhausted to do anything after work.  Just last week, I wrote out a thoughtful note card to my aunt, replying to a note card she sent me ... in October of last year.  That's just unforgivable.  The friends burner is out ... and the family burner is flickering ...

I was invited to a bar tonight to celebrate a co-worker's new job ... and, although I originally said I would go, I just can't.  My body is aching and I want so bad to just lie down.  It helps so much to stretch out ... and I feel like a loser, but I don't feel social ... I feel like curling in a ball right now.  I've already taken one anti-nausa pill.  By five o'clock?   I'll just be focusing on getting home.

And so I apologize.  To everyone I miss ... everyone I don't get to see as often as I would like.  To our friends who are amazing and understanding.  To Stoney who doesn't get date nights as often as we used to ... to everyone who texts or Facebook messages me and doesn't get a text back for a day or two or five.  Sometimes, when you're at the end of the day, there just aren't any extra spoons.

I hurt myself today
To see if I still feel
I focus on the pain
The only thing that's real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything
 
Nine Inch Nails - Hurt

Wednesday, June 28, 2017

Time Will Tell ... Time WILL Tell ...


So, I don't like to get political.  I think I've spoken about it before here ... I've announced proudly that I'm a Democrat and a liberal (for the most part).  I'm not backing down on my beliefs; however, I think we're living in a dangerous time right now.   As a country, we're so divided that it's alarming.  It's not enough anymore to just say, "I believe A" and your neighbor say, "I believe B."  Now there is name calling, harsh words, and sometimes physical violence.  It's for that reason that I hesitate to come here and step on any kind of political soap box.

Having said that ...

One of my problems with "the other side" right now, is that some ... (notice I said some and not all ... we need to stop painting everyone in a group with the same brush) ... of their party members have an attitude of "I believe something therefore it is so."  There are facts ... and there are beliefs.  I believe violet is the most beautiful color in the world.  My proof?  The enormous lilac bushes that grew outside my grandmother's farm house.  Now let's stop.  Violet is NOT the most beautiful color in the world.  What I stated is an opinion ... not a fact.

If you are upset with Hillary's actions ... or hell just her personality ... or her husband getting a blow job in the White House ... whatever ... I can respect that.  I honestly can.  I didn't care for George Bush at all ... although in retrospect ... given what we have now, I'll concede that old Dubya obviously wasn't that bad.  But if you say, "I don't like Hillary because she's running a child sexual assault ring out of the basement of a San Antonio pizza parlor."  I'm going to ask for facts.  Not your opinions ... you don't like her hair cut?  That's cool.  That up there?  I'm going to need some kind of concrete fact.  Not just, "I believe she did it!"

I know ... I know.  You're asking ... "ThirtyWhat ... what the hell are you babbling on about???"

So this happened ...

This morning, I mentioned to a co-worker that I saw on the news that if our state doesn't pass a budget (don't get me started on this state), it will discontinue all sales of MegaMillions and Lotto tickets on Friday.  We were just chatting about it, when another co-worker (an ardent supporter of this administration) said, "That's not true.  They're still going to sell them!"

I paused and said, "Really?  I don't know ... I just saw it on the morning news."  My co-worker friend said, "Yeah, I saw that too."  The Republican became animated ... "NO ... I talked with someone and they said they ARE still going to sell them."

When faced with a situation like this, you have to make a decision.  Do you plant your flag on this hill?  Do you let this go ... or do you push it. 

I decided to push ... a little.

"Who told you?  Do they run a gas station or a convenience store or something?" 
"No ... but they know this kind of stuff."

Let's all pause for a moment ... what does that even mean?  Does her source have some kind of psychic link ala Johnny Mnemonic that allows them to download all the world's pertinent info whilst they sleep?  And what is "this kind of stuff?"  Lottery stuff?  Budget stuff?  General office gossip?

So I got online ... because my back hurts and I feel cranky ... and I went to a news site.  I copied the story that explains that lottery tickets will be suspended on Friday  ... then copied the link to the story ... and put it in an email to my friend and this woman.

Her response?  Do I need to tell you?

"That's fake news."

Okay ... so ... everything eventually fades out of popularity.  No one says "Twenty Three Skidoo!" anymore.  Very few people declare anything, "Groovy."  So I assume at some point, it will be come passe to say, "Fake news."  For me personally, that day cannot come quick enough.

There is fake news.  There really is.  Yeah, there's The Onion ... which is the coolest fake news of them all.  But in general, there are headlines that are misleading ... there is news that is outdated ... and yes, there is news stories that use anonymous sources and should be scrutinized.  And that's true of both sides.  I'll admit that the few radical Democratic friends I have will occasional post articles that I will immediately see and think, "Well now, I'm not sure that's true."

But ... just because the news says something you don't like ... that is not fake news! 

I didn't respond back ... because ... sigh.  What would I say?  I am curious what her response will be come Saturday morning if/when she can't buy a lottery ticket.  Will it still be fake news?  What will the argument be at that point?

She's not talking to me right now ... and that's alright.  My head hurts ... and I don't have the patience or fortitude to charge that hill right now.

I'm just a bill
Yes, I'm only a bill
And if they vote for me on Capitol Hill
Well, then I'm off to the White House
Where I'll wait in a line
With a lot of other bills
For the president to sign
And if he signs me, then I'll be a law.
How I hope and pray that he will,
But today I am still just a bill.

Schoolhouse Rock - I'm Just a Bill

Thursday, June 01, 2017

Why I'm Fat ...


At seventeen, I moved into my first apartment.   I remember going to the grocery store for the first time to buy groceries "like an adult."   I remember my joy in picking out bottles of ketchup and mustard ("This is MY ketchup!") and thinking how stereotypical that I was buying milk and bread and eggs.   I was very reserved on this shopping excursion ... nothing extravagant.  Not that I had the money to be that extravagant.  I do remember buying a small ham and thinking, "This ham is proof ... I am officially grown up."

A few months later, I bought a cake for someone's birthday and I had a small party at my apartment.  There were leftovers, of course.   And while doing the dishes, I reached over and took a finger full of icing off the cake ... and it hit me.

People call this an "ah hah" moment.   Although there should probably be another name for a negative revelation.

I remember stopping ... looking at that cake ... and thinking, "I could eat all this icing ... and no one would tell me to stop."  It was like the scales dropped from my eyes and I saw everything in a different light.  All those times when I was little and my mom took me shopping and I begged for a hot dog or pretzel at the food stand and she said no?  I could get that hot dog now.  I could buy that pretzel!

Honestly, from that moment until today, I've had a terribly unhealthy relationship with food.  Someone I dated once told me, "Food is fuel ... not enjoyment."  I wish ... and I'm not kidding ... I desperately wish that I could think that way.  But I don't.

Stoney and his friends from work went to a Cardinals game today and won't be home until around seven o'clock or so tonight.   When we talked about everything this morning, my entire evening immediately formed in my head.  I would pick up something delicious and take it home ... I would turn on the air conditioning and take a hot shower ... I would get into some soft and comfy pajamas ... and I would eat whatever that delicious thing might be ... whether it was a Monty's sub sandwich or a Long John Silver's peg leg or a Taco Gringo sancho.

I'm a responsible, reasonable adult.  I know that I should not plan an evening by myself around food ... let alone something as unhealthy as fast food.  But again, as my post yesterday stated, I don't really have an answer.  It's not out of control ... I'm not binging on anything as my stomach doesn't have a lot of room for food with my kidneys pressed against it.  But nevertheless, I'm not making good choices.  I know that.

But from that day ... in a tiny, sweltering hot attic apartment ... until right at this moment ... I've found myself thinking, "I have money, I have a car, and I can have anything I want."   Tonight ... I think I want a Monty's turkey sub with extra dressing.

Sigh ... nope ... I won't be getting thin any time soon ...

Somebody told me
Boy, everything she wants is everything she sees
I guess I must have loved you
Cause I said you were the perfect girl for me

Wham - Everything She Wants

Wednesday, May 31, 2017

Woeful Wednesday ...


Most people who meet me think I'm a friendly, out-going individual.  Bubbly is a word that is used to describe me ... and I like that.

But I'm going to be honest here ... because it's the only place I put these type of things.  I'm having an issue.   I think I'm depressed.  Deeply depressed.  Thinking about talking to my doctor about medication kind of depressed.

I can't explain how utterly demoralizing dialysis is.  There's just nothing happy about it.  Not a single thing.  Oh, I had a "good" treatment and didn't cramp?   That makes it twice as bad next time when I think I've done everything right and then I do cramp.

That's not true ... there is one good thing about dialysis ... coming home to Stoney when it's over.  But the problem is that it's a catch 22.  Wanting to be home with him is what makes going in three nights a week so hard.   So the one good thing?   Is also the one thing that makes me hate going in so goddamned much.

This last week was just about the straw on the camel's back ... I had a three day weekend off off work thanks to Memorial Day ... and had to go into the clinic Monday afternoon in spite of it.   Honestly, all I kept thinking all day was, "This isn't fair ... I don't want to do this."

I know ... I know ... I know.   This all sounds like I'm whining and I need to put on my big girl panties and deal with it.   But it's not getting any easier ... it just gets harder.   I've tried reading ... I've tried sleeping ... I've tried making it an "event" and renting a brand new movie from Amazon so I feel like I'm doing something fun.  But it doesn't work.  Nothing works.

And I feel like I have a hundred petty complaints.   The "good" nurses take the early morning shift ... so people, like me, who work full time get the nurses who don't have the seniority to take a better shift.   So we get techs who obviously want to go home ... who want to do the least they can do.   No matter how many times I tell these people, "Don't put the tourniquet on tight or the blood will spray ..." they put that thing on super tight and then act surprised when my blood jets over them and onto the floor.

And Monday ... when I was at my lowest considering I just wanted a HOLIDAY like every other person in the world, I got to the clinic to find they had no air conditioning.  It was like sitting in a hot, humid stew ... surrounded by other miserable people who are sweating and hurting.   Meanwhile the machines are beeping and the nurses are, quite literally, ignoring everything around them.   And now I'm sitting here dreading going in ... because there's no guarantee it's even fixed at this point.

I don't have a solution ... other than getting "the call," there is no solution.   I've told myself this is a "mind" thing ... I have to be positive about it ... to get used to it ... to try to look forward to it.  But it isn't working.  Conversely, I dread calling my doctor to ask him about a possible pharmaceutical fix because that means I'm weak ... and, trust me, I'm on enough pills as it is.

So what to do?   I'll call and see if the air has been fixed ... and if not, I'll take in a fan.   I'll take in some sort of snack to try to make my time there a little easier.  And I'm thinking of re-watching Lost.   And I'll wait for the call ... because I don't know what else to do.

We came across a pharmacy
With its window busted out.
Pushed on through the broken glass
And had ourselves a look around;
The medicines, the medicines
that esculent macabre for the mouth.

The Taxpayers - Medicines

Tuesday, April 11, 2017

He's Lucky ... She's Lucky ... We're ALL Lucky ...


Stoney, my mother, and I went to dinner a couple weekends ago.  We were just siting, visiting, and enjoying our meal ... when at some point, my mom casually commented that it was good that I wasn't one of those women who wanted children ... since I could never have one.

I sat there speechless for a moment and thought, "Does she seriously not remember?"  Or did she purposefully forget?

For years I wanted a baby.  I ached for a baby.  I might've forgotten this part of my past ... except for remembering the side effect of this longing.  Any time the subject came up, my mother constantly reminded me of Steel Magnolias and that, with my kidney disease, I was going to leave them to raise a motherless child.  She told me several times that wanting a child was selfish.  And, quite frankly, I remember me being young and stupid and not caring what she thought about the subject.

Because I went to doctors.  So many doctors.  One would tell me, "Of COURSE you can have children with your condition! We'll get you on safe blood pressure medication and you can start trying any time!" Then the next doctor would say, "What is WRONG with you?! Why would you DO this? Do you not know how SERIOUS this disease is?"  Only to be told six months later, "What? Oh no, you can have children. There's no reason you can't!"

The roller coaster was mentally and emotionally exhausting. Of course there were multiple reasons why the baby thing wasn't happening. My medical issues were certainly a contributing factor. But, despite advances in medical technology, you still have to be having sex in order to get knocked up.  And, by then, that wasn't happening.

When I started having terrible menstrual issues, my gynecologist told me a hysterectomy was necessary and inevitable.  He started to schedule it and I broke down and cried in his office. I told him I hadn't given up on the idea of having a baby.   He stopped writing, put his pen down, and told me that was fine ... but that my problems were bad enough that I would be back begging him to schedule it by the end of the year.

My final period, two months later, lasted 48 days. I was anemic and weak and sick. And the doctor was right. I went to him, defeated, and asked him to schedule the procedure. I was heart broken. The decision was no longer mine.

And at that point, this new story started taking shape. I never wanted children. I joked about hating babies and not wanting to be around children in general.  I went to other people's baby showers and gave gifts. I visited with friends and politely declined to hold their bouncing new additions. I refused to be one of those bitter, mournful women in the park looking at the strollers and coveting everyone else's happiness.  And I guess this narrative spread to my Mom ... because she now announces I'm lucky that I never wanted to be a mother.

Yeah, I'm so lucky.

Good love is hard to find
Good love is hard to find
You got lucky, babe
You got lucky, babe
When I found you

Tom Petty - You Got Lucky

Monday, April 03, 2017

The Things We Think When We Aren't Thinking At All ...


Last week, Stoney and I drove up north to go to a funeral for someone in his extended family.   My first thought, as we were walking into the funeral home, was "This is the first funeral we've gone to together."

This thought could not have been further from the truth.

I honestly don't even know where this thought came from.  We've attended so many funerals together it's both shocking and disheartening.  My best friend ... one of his best friends ... a mutual friend ... then ancillary funerals of my cousin and a life-long friend of mine.  With our record of funerals, you would think Stoney and I have been together a decade instead of four years.

If I had to guess, and I am, I suspect the random thought related to my Dad.  When I walked into the small but lovely chapel, everything reminded me of my father's funeral.  This service was for (and please bare with me because this is convoluted) my future brother-in-law's wife's father.  I met this man several times at various family holiday affairs and he was genuinely sweet and friendly. 

When my grandfather died in my mid-20's, I cried at the graveside.  I didn't cry for my grandfather because he was a mean, selfish prick.  No, I found myself unexpectedly sobbing that day because, as my brother and I walked past the casket for the last time, I looked over at my dad.  His entire face was just a twisted mask of sorrow.   At that moment, I made the connection.  I realized that he was losing his father ... and someday that would be me ... someday I would lose mine.

Last night, I had a similar experience ... but in reverse.  I looked at my future-sister-in-law ... I saw her infinite sadness ... and thought, "I remember that."

Even though Stoney and I have held hands through more services than I can count on one hand, I didn't know him when I lost Dad ... although I wish I did.  God, my Dad would've loved Stoney.  My Dad would've given anything to have a son to watch a game with ... a guy to grill out with ... someone who wasn't a woman that he could just spend a Sunday with.  I'm not exaggerating when I say my heart hurts to think of what could've been.

Sigh.  But what's done is done.  And although the last 24 hours of Dad's life was more horrible than I could've imagined, I did have eight months with him after his heart attack.  I had eight months to say good bye ... to have all sorts of conversations with him that we'd never had.   It's odd what brings things back to you ... and I didn't think driving up north that night would bring up all these memories.

My Dad's birthday would've been this Saturday ... I think I'll ask Stoney to grill out something in his honor.  That man loved to grill.  And he loved me.  I was an odd photo bombing, butter-eating child ... but my dad loved me.  So I have that going for me.

This is the book I never read
These are the words I never said
This is the path I'll never tread
These are the dreams I'll dream instead
This is the joy that's seldom spread
These are the tears
The tears we shed
This is the fear
This is the dread
These are the contents of my head
And these are the years that we have spent
And this is what they represent
And this is how I feel
Do you know how I feel?
'Cause I don't think you know how I feel

Annie Lennox - Why

Note - When they released my Dad from Memorial hospital and registered him with home hospice, they told us he would probably crash on the ambulance ride.  He signed a DNR ... and the doctor prepared us for what was certainly going to happen.  I left the hospital about 15 minutes ahead of the ambulance ... to turn on the central air and get the house ready for him.  Annie Lennox's song, Why, was playing on the radio ... the corn was growing and the fields were the deepest green ... the sky was the brightest blue.  The day was so gorgeous ... and the contrast of that beauty to the pain of knowing what was coming ... and all the while that song played.  Anytime I write about Dad, you'll see Why at the bottom.  I'm not being lazy or repetitive ... but that song is him.

Monday, March 13, 2017

American Bitch


So this weekend, I watched the episode of Girls entitled "American Bitch."  It hurt to watch this episode. It physically hurt to watch this episode.

Note:  From this point on, there will be spoilers galore.  If you normally watch Girls but haven't seen American Bitch, stop now and go watch it.  Come back and we'll kibbitz.  If you don't watch Girls and don't plan to watch Girls?  Go ahead and read.  What the fuck ... why not.

Right after we watched this episode, Stoney read a review aloud from a writer he admires.  The writer references the clever "twist" at the end.

[Insert sound of record scratch.]

Hello?  There is no twist at the end of American Bitch.  Not if you're a woman.  If you're a woman, every moment of that episode screamed "Danger Will Robinson."  And the longer it went on, the louder that alarm sounded.  By the point Chuck Palmer, played brilliantly by Matthew Rhys, lays on the bed and invites Hanna "just" to lay next to him, my stomach was literally in knots.  Ask Stoney ... I'm neither lying nor exaggerating when I say I yelled out, "HANNAH NO!"

There are men ... (Maybe there are women too?  I don't know ... I don't swing that way.  But let's be fair ...)

There are people around us every single day who are sexual predators.  Conquest is a game to them and they are playing the shit out of that game.  They are lions at the water hole ... sniffing every move the gazelle makes.  Is the mark timid?  They adjust to the left.  Forceful?  Adjust to the right.  They know what to say and when to say to make you feel important.  To make you feel special.

If you laid on their bed naked and said, "Come at me," they'd fuck you.  Probably.  But that's not where the fun is.  The fun is in the pursuit.

I could tell you a dozen different "tells" in that episode.  From the moment he "patted" the door frame as he walking out to get coffee ... to him sitting in the middle of the couch so that when Hannah sat down,  she would be closer to him ... to him showing her books in his bedroom (his bedroom for Christ's sweet sake) ... every single move was another step closer. 
It was brilliantly written.  And when that doorbell rang, Matthew Rhyes gave the best evil villain smile since the Grinch Who Stole Christmas.

Here's the honest to God truth.  I assume that most women, like me, who watch Girls regularly don't want to be Hannah.  Hannah is narcissistic ... self-absorbed ... down right clueless at times.  But watching American Bitch ... I'll admit it.  I've been Hannah.  I have a teacher story.  Don't most of us with ovaries have a teacher story?  I've been in situations where that inner voice said, "You should really get out of here right now ..."  Sometimes I listened to that voice ... sometimes I didn't.

It was painful to watch.  But it's important to watch.  That parade of women walking up to Chuck Palmer's apartment as the episode faded out was a striking visual ... a visual that tells us we weren't the first and we won't be the last.  

American Bitch isn't just painful.  It's true ... and it's fucking depressing.



I'm a bitch, I'm a lover
I'm a child, I'm a mother
I'm a sinner, I'm a saint
I do not feel ashamed
I'm your hell, I'm your dream
I'm nothing in between
You know you wouldn't want it any other way

Meredith Brooks - Bitch

Monday, February 06, 2017

Thoughts From The Big, Uncomfortable Chair ...

We all want to believe that we add value to the world. I think that's normal.  But things get complicated if you have a medical condition. For instance, let's take dialysis. It costs around $27,000 a month for dialysis treatments. 

I think any logical human being would look at that number and be soul-crushingly depressed.  How in the world can you justify that kind of cost? You wind up dreading to open the mailbox every day ... and looking at the insurance paperwork and thinking ... what have I done to earn this? 

What do *I* add to the world? 

It's a dark rabbit hole ... who adds $27,000 worth of value per month to the Earth?  Ghandi?   Okay, well he's dead … so that's not a good example. But Stephen Hawking? Steven Spielberg? 

Imagine a disaster movie kind of scenario.  Who would you save?  A doctor?  A scientist?  A writer?  I don't know ...  but I know it's not me.  

There are a thousand depressing thoughts that go through your head while you're sitting in this chair for 3 1/2 hours, 3 times a week. This just happens to be one… 


Friday, February 03, 2017

Weird Thought #431


So I believe there are different kinds of basic personalities.  For instance ... there are people who love numbers.  They see math as a kind of foreign language that they both understand and enjoy.   There are inventors who see the world in a different way than most of us.   They look at a situation and think, "I can make something better ..." and then they do.  Then there are people who are creative souls.   Those people are cooks ... and artists ... and musicians.   Those people aren't happy unless they're creating.  And, honestly, it doesn't necessarily matter if they're good at it. 

Not everyone is Picasso or Beethoven.  There are people all over the planet painting shitty portraits of their pets ... or people (like me) playing shitty renditions of their favorite songs on the piano.  But creative souls do it because they felt drawn to create.  I'm at the "barely functioning" level of creativity ... but I feel drawn to make personalized Christmas cards every year ... occasionally I feel drawn to pick up a crochet needle and make someone a beautiful baby blanket ... sometimes I feel drawn to cook something that makes people smile.

And so on the drive to work this morning, I was wondering ... maybe all ... or some ... of the tortured souls in the world are that way because they can't do what their soul tells them to do.  Maybe they were born to be musicians ... but their family couldn't afford an instrument or their parents looked down on music as a career choice.  Maybe they were born to be a mathematician or scientist ... but they grew up poor and went to a sub-par public school and weren't exposed to the right opportunities.  

Maybe some of the people who are clinically depressed or addicts or are just unhappy with their lives .. maybe there's a reason.  Maybe they're suffering because the world just feels wrong to them ... they know they're miserable but they don't know why.  Maybe it's because they weren't able to become who they were supposed to become.

I don't know ...

Weird things I think about on the drive to work ...

Oh, I'm not aware of too many things
I know what I know
If you know what I mean
Philosophy is a walk on the slippery rocks
Religion is a light in the fog
I'm not aware of too many things
I know what I know
If you know what I mean

Edie Brickell - What I Am

Tuesday, January 24, 2017

What Is Real?

So, I missed my dialysis treatment on Monday through no fault of my own.  My tech, a young woman who is just learning the job, infiltrated my fistula when trying to put me on the machine.  Not necessarily catastrophic ... but infiltration can destroy a fistula ... which is catastrophic.   You need at least 24 hours to "heal" ... and since I work full time my rest period would be 48 hours.

This would normally be a bad thing.  But this happened on a Monday.  Which makes it a very bad thing.  You see, I my last treatment was Friday evening.  Which means I usually have all day Saturday, all day Sunday, and all day Monday before my next treatment ... three days.  Now, due to the infiltration?  It's five days.

This is the first time I've gone this long without treatment since starting dialysis.  The problem is that I doubt myself constantly.  I'm exhausted.  Is that real?  Is it because I need treatment?  I'm nauseous.  Is that real?  It feels real.  Is my blood that dirty?   I've felt like crying all day.  What's up with that?  Is that normal with this?  What in the hell is going on?

I am tired and I am nauseous and I do feel like crying.  But who knows.  Maybe it's because my body desperately needs cleaning.  Maybe it's all in my head.  I just don't know.

Wednesday, January 04, 2017

That Thin Line ... Waaaaay Back There ...



I was raised with the concept ... "God doesn't give you more than you can handle."

Now do I logically believe that statement is true?  No.  I go back and forth on the whole subject of God ... and I'll tell you that, at the moment, I believe that if there is a God, he's an absentee landlord.  I want to believe there's a higher power of some sort ... I really do.  I'm just not sure how "hands on" he is.

In any case ...

Under that concept, I believe there really might be a reason why Jesus didn't give me children.  I just don't think I have the right personality for that kind of stress and worry. 

Now let's press pause ... yes, I worry about the girls.  And yes, there was stress now and then with them growing up.  But I know their mom ... and their mom's level of worry and stress is on a whole different level.   One time, when the twins were in high school, they were late driving back from an afternoon event in a city about 45 minutes away.  Their mom called asking if I'd heard from them ... I hadn't but assured her we'd stay in touch.  As the time ticked by, we continued to talk off and on ... and she became frantic.  I was calm ... certain they were on their way home.  I imagined that their cell phone had died ... that at worst they might have a flat tire ... but that, in general, things were fine.  Their mom, meanwhile, was in tears.

I love the girls so much I don't have words ... but I know their mother's love is boundless.

What does this have to do with the price of tea in China?

Stoney had bariatric surgery about a month ago.  He was doing amazingly well until Friday.  Please let me assure you all ... he's still doing amazing.  But he hit his first bump on Friday and got sick from something he ate.  Then he struggled over the weekend with different foods and with overall fatigue.  I've been so worried about him.  Worried he isn't eating enough.  Worried that he's going to get dehydrated.   I feel like some kind of old-world, Italian mother ...

Are you alright?
How are you feeling?
Are you hungry?
Do you want a Popsicle?
Are you drinking water like you're supposed to?
Do you want some pudding?
Did you take your vitamins?

I feel like there's a thin line between being concerned and annoying the shit out of someone ... and that line is way behind me.   It's hard to stop myself ... and my only consolation is that I ask him only one out of every three questions I have.

Maybe this is why Jesus didn't give me a baby.  There's a scene in Parenthood with Jason Robards and Steve Martin.  Jason Robards is talking about Steve Martin getting sick as a baby and how they didn't know if he would make it ... and how much he hated him for making him worry.  The end of that quote is ...

"You know, it’s not like that all ends when you’re eighteen, or twenty-one, or forty-one, or sixty-one. It never ends. There is no ‘end zone.’ You never cross the goal lines, spike the ball, and do your touchdown dance. Never.”

For what it's worth, I won't always have to be asking Stoney about vitamins and protein and water and Popsicles.   I won't have to ... but I probably still will.

Button up your overcoat
When the wind is free
Take good care of yourself
You belong to me!
Eat an apple every day
Get to bed by three
Oh, take good care of yourself
You belong to me!

Frank Sinatra - Button Up Your Overcoat

Wednesday, December 28, 2016

It's Such a Small Request ...


So ... one of the hardest things about dialysis (and let me assure you that it's difficult to narrow a discussion down to "one" thing) ... is that you are tied to a treatment schedule that is practically chiseled in stone.  I'm not sure how it is in other centers, because I've only to be one so far, but there is little to no flexibility.  Oh, my center will tell you that they will work with you ... but when you actually request a change, they hem and haw and ultimately say no.

Now some aspects of this I understand.  My schedule is Monday, Wednesday and Friday.  Let's say I complete my Friday treatment ... and ask to change Monday to Tuesday.  Well, that's three days.  I suppose if I wanted to go to St. Louis for a long weekend, I could demand to skip three days.  But for the normal, everyday kind of things ... I get it.   I don't ask for a three day break.

But let's say it's something special like someone's birthday.   And I ask ... days in advance ... to switch to a schedule that's Monday, Thursday, and Saturday.  That's no more than a two day break ... and yes it is a change ... but ultimately ... I'm told no.  

Then I request ... instead of starting at four thirty, could I please have a special start time at noon ... or even one o'clock.   I will take a half day off work ... just to make sure I'm home in the evening.  Again, I'm told they will "work with me" ... and the day before, they call to say there is only one opening and it's at 9:30 a.m.  So basically I'd have to take the whole day off ... which is kind of hard these days with all my sick time and medical issues.  So once again ... ultimately ... no.

Right now you're thinking ... can't you just "call in sick" to dialysis ... and just not goThe simple answer, I suppose, is yes.  Although it's a black mark against you.  If you don't want to get on the transplant team, that is perfectly fine.  There is literally no repercussion if you aren't on the transplant list and you don't want a treatment.  People call off all the time.  But if you do want a transplant?  You better take every pill ... and you better be sitting there five minutes before your treatment every. single. goddamn. time.  The transplant team is watching.  That's not paranoia ... it's just the way the organ transplant program works.

So to make a long post just a little shorter ... I'm disgusted.  

I'm frustrated and downhearted and disgusted.

I'm already having issues because it becomes more and more depressing ... soul crushingly depressing ... to force myself to go to a treatment that may or may not be a painful horror show.  Some treatments are fine.  Other than being boring, some treatments are literally nothing but sitting there not moving for three and a half hours.  Other treatments ... you have cramps so bad that your leg muscles ache for days ... you throw up so much that your stomach muscles are raw ... you sit there dizzy with a pounding head ache.

It's a fucking three-night-a-week shit show ... and so to deny a patient that one aspect ... the ability to flex a little ... the ability to say, "Hey, I want to spend someone's birthday with them ... can I please have my treatment tomorrow night?"  To be denied that is enough to make you want to cry.

I don't have an answer.  Are other centers better?  I don't know.  Mine is short staffed ... I know the nurses aren't happy with the long hours and the staffing situation.  I'm on a "better" side of town ... so you would think we would have a nice facility but it's nothing to write home about.   Or maybe it is?  Maybe I would go to another center and marvel at how great I have it.   I just don't know. 

But I can tell you that I'm going to end up in therapy if I have to spend the rest of my life missing every birthday, family dinner, and work gathering.  And therapy?  Would just mean more time away from home.

I'm done bitching ... at least for today.

If you woke up
On the wrong side of the bed
Count on me.
If you're feeling that freight train
Running through your head
Count on me.
If you just need a friend to talk to,
or maybe not talk at all.

I will bring you buckets of mercy,
and put a smile back on your pretty face
I'll bring a shovel if you want it.
Carry your secrets to the grave 

Drive By Truckers - Mercy Buckets

Wednesday, December 14, 2016

Finally ... A Deep Breath ...


As we laboriously crawl towards December 31st, let's all close our eyes, take a deep breath, and proclaim that 2016 has been one ginormous shit show all the way around.

It started at the highest level ... and the fecal matter just kept rolling downhill.

We lost national treasures like Bowie and Prince and Rickman.  Trump was elected.  Illinois became more and more of a dumpster fire as Rautner and the Illinois congress refused to pass a budget.  And the marachino cherry on this dung heap of a sundae ... my kidneys finally failed and I'm going to hemo dialysis three times a week.

Last week, I finally felt like sitting on the floor in a corner and crying like a baby.

We took Stoney to the hospital at 5:15 a.m. Monday, the 5th, for bariatric surgery.  By Tuesday evening, I was huddled in a chair at the hospital ... in the same clothes I'd worn for two days straight ... hungry and thirsty and futilely trying to get my team leader to understand that, without super human strength, I could not work eight hours, get someone safely home from the hospital, and then complete four hours of dialysis.  I felt like sobbing.

I know it has to be a weakness of character.  People deal with far more stress every day.   But I was at the end of my rope.   Part of it was the stress of worrying about Stoney ... bariatric surgery is serious after all ... and I was beyond scared for him.  Part of it was sleeping on a rock hard recliner for two nights.  Part of it was hospital cafeteria food.   Part of it was worrying about my job.   Part of it was worrying about my heart catheter that was scheduled for the 12th.

Sure, they were all straws ... but they were straws on the back of a camel who already has two broken legs.

But I finally woke up this morning and felt like I'd reached the light at the end of the tunnel.  Yes, I realize that most of the time that just means a train is about to hit me square in my silly ass.  But I feel like I can take a full breath for the first time in days.

Stoney is doing amazingly well.  I just can't brag on him enough.   He's following his doctor's instructions to a tee ... walking and taking in the required fluids ... he looks so much stronger every single day.   It's not that I still don't worry about him ... but I can look at him now and see how much better he's doing.  He even felt well enough to go to a Christmas party last night for an hour or so.   He needed to get out of the house and everyone loved seeing him. 

In other news, my heart cath came back perfectly clear ... and Dr. Ahmed says I'm cleared for the transplant team.  I talked to the coordinator today and they're setting me up for my yearly review.   Dialysis isn't fun ... but we're moving closer and closer to being on the active transplant list.  And that's the goal.

I still have things to do ... I have to call the girls tonight and schedule our Christmas get together.   They asked me about it nailing a time down last Tuesday ... but, unfortunately, I was sitting in a hospital chair in the middle of having a small panic attack.  So they're my number one priority tonight.

And yes, I have to pick up a few last minute presents for Stoney's family ... and talk to Mom about finalizing our Christmas Eve plans ... but for the first time in a couple weeks, I feel like I'm on top of things.   Christmas isn't Christmas without a scoop of stress.  But I'll sit at dialysis tonight ... talk with the girls and maybe watch that new documentary on Netflix ... and everything will be alright.

Stoney is safe ... and I'm blessed.   Happy holidays, everyone ...

The party's on
The feelin's here
That only comes
This time of year
Simply having a wonderful Christmastime
Simply having a wonderful Christmastime

Paul McCartney & Wings - Wonderful Christmastime

Friday, November 11, 2016

Close To You ...



So today ... I'm going to get emotional and mushy.   If that's not your thing?  Cool ... see you next post.  If it is, read on, McDuff!

It's my birthday today ... I can't begin to tell you how happy I am ... how lucky I am ... how blessed I am.   I have a mom who loves me and worries about me.   I have three amazing girls who never stop surprising me and making me smile.  I have a family who cares about me and is constantly sending texts and cards and messages.

And then I have Stoney.

Every morning, I wake to him reaching for my hand.  Every night I go to sleep hearing him say, "I love you."  This year hasn't been easy ... I for that I feel bad.  I wish I hadn't wasted so long.  I wish I'd found him years ago and spent that (relatively) healthier time with him. 

But he hasn't stopped holding my hand and telling me it will all be alright.  Through multiple surgeries and appointments and dialysis treatments ... he's the reason I have for fighting.  The reason I have for taking all these stupid pills.  The reason I have for sitting in that chair for four hours, three times a week.  Because I finally found him ... and I want as much time with him as I can possibly squeeze out of this life!

 I love you ... and I can't wait to be your wife.

Why do birds suddenly appear
Every time you are near?
Just like me, they long to be
Close to you

The Carpenters - Close To You

 PS - Thank you, Miniature Moose for my warm, beautiful blanket!  I'll be using it tonight at dialysis and thinking of you!   Thank you, Idiot's Anonymous for dinner last night and for the Book of Mormon music and for the DELICIOUS cupcake!   Thank you for the birthday wishes, College One ... have an amazing time in LA ... I'd tell you take pictures but that's like telling a fish to swim!  Love all three of you!

Monday, October 31, 2016

Brave New World ...


It is has been one week.   We're living in a brave, new world, everyone.  And it's terrifying ... but it's also good.

I've had three dialysis treatments ... one immediately after I woke up from having a catheter placed under my collarbone.  The two following treatments were done at the center closest to our home.  The entire experience is a strange combination of feeling uncomfortable ... feeling bored ... feeling overwhelmingly anxious ... and, at the end of a treatment, feeling physically exhausted.

I've been used to feeling drained.  I've been living at various stages of exhaustion for the last half dozen years.  But this is ... different.  It's not the same.   And it's not bad per se.   Your mind is still active ... but your body feels as though you've been walking through jello for hours.

But overall, after three treatments, I think my mind is clearer.  My appetite hasn't really come back.   My thirst has slacked significantly ... and, in tandem, so has my urine output.   The weird new thing is a restlessness.  The nephrologist required a week off work to adjust to everything.  And during that week, there were moments ... and it was not constant, unfortunately ... but there were, and still are, moments when I feel like I need to do something.  I need to run the laundry ... I need to empty the dishwasher.  I need to make the bed.  I need to move.

That's a nice change of pace ... since before the dialysis, I could literally lay on top of the bed watching movies for hours without wanting to move a finger.   My body hurt before and laying down was the most comfortable position.   I never felt like I was getting stronger ... but I felt like I was treading water.  Just getting by.

Now ... I think I might be doing more than getting by.  Maybe.   The jury is still out.  We'll see how I feel at the end of this week ... after three more treatments and a week of work on top of it.

Speaking of work ... if anyone is still reading this, please cross your fingers or say a prayer or leave a gift for the great flying spaghetti monster.   I have to work out a new schedule with my employer ... and while it's a great place to work ... things are still ... iffy.   More on that when, and if, I know I have a job and won't be living on disability for the foreseeable future.

So three treatments down ... three thousand more to go.  Stoney is with me holding my hand ... and he gives me a reason to not give up ... he gives me a reason to fight.   Cause ... I just found him.   I want to smile and laugh and love and zurburt him for years and years to come. 

Three hours until the next treatment ... we can do this.

Without you in my life
I'd slowly wilt and die
But with you by my side
You're the reason I'm alive
But with you in my life
You're the reason I'm alive
But without you, without you ...

Motley Crue - Without You

Wednesday, October 05, 2016

Enough ...


I can't believe it's 2016 and I need to write this ...

So I'm friends with someone on Facebook that I used to date.  It was a lifetime ago ... we both moved on and have little contact with one another other than the occasional birthday greeting.  However, looking at us both today, I have no idea how we even had enough in common to speak to one another ... let alone meet each other's parents and look at houses together.

I am a Democrat ... a spiritual person ... but a non-practicing catholic ... a relaxed liberal.

He is a staunch republican ... a Catholic ... but a rabid, conservative-Christian, extreme Catholic ... a Glenn Beck, Rush Limbaugh, Sean Hannity, Fox News kind of conservative.  He likes Sarah Palin.  He likes Sarah Palin.   Seriously ... how did we ride in a car together?!

But you know ... whatever.  The world needs all kinds, right?   And whenever anyone talks about things I feel strongly about ... whether it's politics or religion or Chicago-style pizza ... I listen and move on.  I'm rarely, if ever, offended.  You are free to believe whatever you want to believe.  I honestly think that's what makes America great.  You like feta cheese ... I think feta cheese tastes like a combination of moldy sweat socks and the death of all hope and love ... but we should be able to respect each other's positions and get along.

And yet ... I'm about to unfollow this person. 

It is 2016 ... why do I need to say this?

I'm pro-choice.  Choice.  I believe women should have the right to choose.  Being able to make a choice does not mean I support a "culture of death" ... I'm not "pro-abortion" ... I don't love killing babies.

There have always been abortions.  Whether women were drinking dangerous tonics given to them by charlatans ... or seeking out those "special" doctors who would do it on the sly ... or, in the worst scenarios, risking their lives by doing it themselves ... abortion has always been here.  Being pro-choice means I want women to have safe options. 

Here is the Tao of ThirtyWhat.

I believe that women in the position of considering an abortion have to make the hardest decision of their lives.  Whether they feel they're too young ... whether they already have a large family ... whatever their situation is ... their reasons for needing this service are none of my business.  They don't need to justify to me, or anyone else, "Wait, I need this abortion because of ..." ... no.  They don't need my approval ... and they don't need yours.  They need non-judgemental support.  They need a clean, safe medical facility.

Have I had one?  No.  Would I personally have one?  Honestly, no ... I don't think I would.  But that right there ... that's the definition of choice.  Do I believe our taxes should pay for it?  No.  Do I believe late-term abortions are alright?  No ... I'll admit that I'm not alright with that.    

But here's the thing ...

I do not need you to educate me.  I most-definitely do not need you to pray for my soul.

As I said earlier, we don't talk.  So his posts are not directed at me ... and I don't think he would notice or care if I unfollowed him.  I think I've held off up until now because I want to believe I'm open minded and alright with everyone's opinions ...

But today vitriol might've been the cherry on top.  It may be time to push that button ...

She won't even miss me when she's gone
And that's okay with me I'll cry later on
Talk to ya later
Don't want to hear it again tonight
Talk to ya later
Just save it for another guy
Talk to ya later
Don't want to hear it again tonight
I'll just see you around

The Tubes - Talk To You Later