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

Monday, September 26, 2016

My Blessings Stretch Far and Wide ...


So I'm off work today ... healing from yet another procedure.  This makes three ... in case anyone is keeping track.

This time is weird.  In some ways it hurts so much less than last time.  Last time they cut just above my left wrist and inside my left elbow.  Which meant that no matter how you moved your left arm or how you tried to use it, you were putting pressure on an incision.  That was bad.

This time, everything was done on the inside of my left arm.  Which hurts.  A lot.  But still, I think I'm in a much better place than last time.  Also, this time, I allowed myself more time off work to recover.  They did this last Friday and I won't return to work until Wednesday ... so five days.  Last time, they did it on a Tuesday and I tried to go back on Thursday.  That was a monumentally stupid decision.

This time, my arm looks so much worse.  It honestly looks like some sort of horror show.  I don't have a lot going for me in the looks department?  But I can't tell you what an enormous hit pulling off that bandage did for my self-esteem.  I usually swear sweaters or wraps anyway ... because my arms have always been chunky.  Now ... ugh.   I was never planning on wearing a sleeveless wedding dress ... but I'm going to have to look into burkas.  Do they make them in white?  Maybe a nice egg-shell?  Ecru?

One more thing before I lay down and take yet another nap ... everyone has been so loving and sweet and caring.  Stoney has had endless patience with me ... between making me fresh lemonade several times each day ... to helping me with my bandages ... oh and let's not forget coming to my rescue when I accidentally rubbed deodorant into my incision ... he's been my hero and my love every single day. 

I have beautiful flowers that make me smile with a card that reads "from your girls" ... and I can't thank them enough for talking with me and just being there.  My mom has been at the hospital ... taken me for lunches and made calls to the family when I've been too weak and tired to do it.  Everybody has made me feel loved.

And so even though I feel like I've got a thousand reasons to be depressed beyond reason ... I've got a million reasons to feel warm and loved.

And that's more than enough to get me by ...

Ev'ryone can see we're together
As we walk on by
And we fly just like birds of a feather
I won't tell no lie
All of the people around us they say
Can they be that close
Just let me state for the record
We're giving love in a family dose

Sister Sledge - We Are Family

Wednesday, September 07, 2016

Once More With Feeling ...


So I'm sitting here waiting to hear from the surgeon's nurse.   I needed to ask a few questions that I failed to ask yesterday at the gut punch they called an appointment.

Good news ... the fistula in my elbow is developing nicely.  It's already bigger than it was when they spliced it together.  It sounds healthy ... it looks good.  

Bad news ... the cut on my wrist from the first fistula attempt isn't healing as well as it should.  They had to leave one of the stitches in to keep everything together.  It's red and uncomfortable ... although they don't think it's infected.  Also that whole pinched nerve causing the painful thumb?  Oh yeah, that's normal and "should" work itself out.  Although it might "take awhile." 

Worse news ... that fistula surgery?  Was only the first procedure.  The surgeon has to go BACK in and MOVE it from my inside elbow to the center of my upper arm.  It apparently requires about a four to six inch cut. 

It just ... keeps ... getting ... better.

We had a plan.  The plan was to go in for my two week checkup ... start exercising that arm to grow the fistula ... and start dialysis in about four weeks.  Now?  I go in on the 19th and if it's grown sufficiently, they'll plan a date for the second procedure. 

Then what?   Two weeks later for a checkup?  How long until dialysis?  How long until it's ready to be used?  How long before I can use that arm?

I don't know any of those things because when he told me about the second procedure my brain just shut down.  I wasn't going to cry in the office ... but at that point I kind of went into "off" mode and I stopped thinking.

So I'm waiting for the call.  It's not like the news is going to be lighthearted or fun ... but sometimes you just have to know.  Tonight after work, they're going to take blood to check my function ... I guess to see how close we're cutting it.  Keep your fingers crossed, everyone ...

I took my love, took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow-covered hills
'Til the landslide brought me down

Fleetwood Mac - Landslide

Thursday, September 01, 2016

I'm Better ...


So, let's pretend you're feeling better ... except for one thing.  A small thing.  But it's always there.  Always.  No matter what you're doing, you feel it.

I'm better ... really.  But when they tried to put the fistula in my left wrist, they apparently bumped a nerve. Or nicked it.  Or beat the living shit out of it. 

Whatever they did, from my wrist up to the nail, my left thumb is numb.

No, that's not right.  Numb would be relatively good.  This is like it's permanently asleep.  That burning, tingling sensation?  It's there.  All the time.  It feels like my left thumb has been plunged into a bowl of ice water and left there.  Forever.  The skin hurts.  The joint hurts.  It's like this constant low-grade ache.

Oh ... but wait ... there's more.

Occasionally ... I'll say maybe once an hour ... it feels like a needle pokes that thumb.  The fatty party ... that's basically the left part of your palm?   I'll be working or sleeping or whatever and it feels like a needle sticks that thumb.  In the same place.  Just once.  Then stops.  For about an hour.  

So you know ... I have that going for me.

I talked to the surgeon's nurse.  Who consulted with the surgeon.  Who said this is "not unexpected" ... and said it should get better.  But if not to show him when I see him next Tuesday.

I talked to the dialysis forum.  Who said this is "not unexpected" ... and said it may go away on it's own or it may require surgery.

In which case fuck thatThe thumb can fall off.  I can type with one thumb.  No more surgeries.  Stick a fork in me (HAH!  See what I did there?) cause I'm done.

So ... let's set aside that frustration for a moment ...

I'm better.  You put your hand on my inside left elbow and feel the "thrill" that means the fistula is working.  It feels like a little electric buzz. 

Did I mention that buzz irritates the ever loving fuck out of me?

But I focus on the "I'm getting better" part. 

I'm getting better.  I'm trying to ignore the buzz.  Trying to ignore the burning thumb for now.  And trying not to be terrified that this fistula won't mature enough for dialysis.  Because then what?

I feel like there is a thousand pounds on me.  Like I am constantly holding up this building ... and my (proverbial) arms are so goddamned tired.

I used to work with a woman who was a good friend of mine.  She used to say ... between two pillars lies a porch.  Which, apparently, is a Texas saying which means that two people can hold up a lot more than one person can. 

Without Stoney I think I'd probably just crawl into a ball and call it a day.   But he's my other pillar ... and that's a pretty amazing thing.  So honestly ... I do have that going for me. 

Did I mention I'm better?

If I tell you what you want to hear,
Will it help you to sleep well at night?
Are you sure that I'm your perfect dear,
Now just cuddle up and sleep tight. 

Tracy Bonham - Mother Mother

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!