Thursday, December 18, 2014

An Unexpected Gift

I've decided to give myself a gift this holiday season.

It hasn't held space on my Amazon wish list, nor have I ever written it at the top of a hand-scrawled Christmas list (so it's clearly not a pony).

I'm fairly confident it was not a popular item on Black Friday, nor will it get stolen in this year's Yankee Swap.

No matter how much I wish and hope and dream, I know I won't find it under the tree on Christmas morning - not to diminish the stupendousness of Mr. Claus, but this is a gift that only I can give.

You see, I'm giving myself the gift of uncertainty.

Yes...uncertainty.

Whether by pure calendar placement coincidence, or otherwise, the holidays come with expectations.

Expectations based on the past year's reflections.
Expectations on how and what you will celebrate.
Expectations on what you will be proud of, the challenges you'll face, and what the dawning new year will bring.

And after spending several holiday seasons expecting a life that has simply not yet happened, I've decided it's not the right way for me to find the true magic of the holidays.

So I'm giving myself the gift of uncertainty.

What happens when we really and truly release our expectations and deepest fears, and become open to all of the amazing twists and turns that life will bring? What if we look at every day as a grand adventure and simply celebrate the fact that we are on this earth and are lucky enough to sit in the first row of our very own roller coaster?

Maybe that's where the true magic lies - in the place where instead of writing the book, we jump into the illustrations and let the story unfold.

I would be lying if I told you that I haven't spent the past 4 consecutive Decembers noodling that the upcoming year would finally be the one where things happened.

My health stabilized.
We got a dog.
Didn't count pennies.
Started a family.
Traveled.
Galloped off into the sunset.

And while those are all still dreams that I will continue to believe in with every fiber of my being, I no longer plan on making them expectations. When I expect something to happen, it gives the false illusion to myself that I'm in control of the outcome - and in this situation, I'm simply not...and that's ok.

In fact, I'm giving my expectation list a total head to toe makeover, including the one in which I still dream of being an Olympic gymnast. I'm 6 feet tall, 31 years old, and am not confident in my ability to somersault...so, ya know, there may be a few items to discuss.

Sure - releasing control is terrifying. We build grand, elaborate blueprints for our lives and though they rarely go according to plan, we still somehow expect them to happen exactly as we imagined.

If you think about it, it's absolutely nuts.

If things did go exactly according to our original plans, I would most likely be betrothed to either my 2nd grade crush (who tragically broke my heart when he moved to Pittsburgh) or Chip - the broken teacup in Beauty and the Beast...who, I'd like to point out, is approximately 8 years old.

Come on...admit it - he is the cutest darn teacup you have ever seen in your life...and his mother is Mrs. Potts!

We build these expectations in our mind of how life is supposed to go, and then when they fall away, we are left emotionally scrambling to climb a mountain that is irreparably falling apart. It's exhausting.

So I'm giving myself uncertainty.

I'm wrapping up the ability to find peace with who I am, right here in this very moment - to find the song in the silence between what we expect and the magic of the unforeseen possibilities.

In truth, I'm letting my spirit do the holiday shopping this year.

So I choose uncertainty - wrapped in bright red paper, with a giant sequined bow.

For in a world with so little in our control, I know that this magical choice is mine.



Monday, December 8, 2014

Jail Break

People.

A momentous day has occurred.

I left the house,
in a car,
that I was driving!

[Insert girly squeal mixed with the Hallelujah chorus]

After over a month of near house arrest, I busted out the front door like it was my last Economics class in college.

(Well, actually I just had 2 surgeries...so I carefully opened the front door with my non-stitched-together-chest-muscle-arm and then took the steps one at a time so as not to disturb the 7 layers of stitches in my abdomen...but...well...I can assure you it was with much pep and enthusiasm!)

The fact that post busting down the door I drove to the doctor and then immediately came home to take a nap is neither here nor there. I did it myself!

Also most importantly one of the following items did not bust out the front door:

1. Sneakers
2. Penelope the Pacemaker
3. A gastric fistula

I know. It's the holiday season and I'm asking a hard question to your frazzled brain. My most sincere apologies. I'll give you a hint: it begins with an F and ends with "istula."

Fistula free, baby.

Despite the fact that this fistula formed prior to surgery #1 and took 2.5 weeks to prove to the world (ahem, medical community) that it existed, the timing ended up being rather fortuitous. Even at only 3 weeks old, Penelope the Pacemaker proved her place in the world when I was on a clear liquid diet for over a week and my heart was supposed to just keep beating every minute of the day (I'm so demanding. I like it when my lungs breathe too. So high maintenance, I know).

Let me just assure you, when your only clear options are broth, coconut water and cucumber juice, your blood pressure doesn't exactly top the charts.

Furthered by the fact that my specialty-compounded-yellow-dye-free-non-narcotic-pain-medicine required to be taken with food.

Ya know, to avoid dizziness.

Oops.

In other news, post surgery #1 I have developed an irregular heartbeat.

Yep.
Take some time to soak that in.
I think I asked my cardiologist for clarification a minimum of 6 times.
Headline news: "Lady gets pacemaker inserted and develops an irregular heartbeat."

Please refer to the business card: Surprising the world with the rare and unusual since 1983.

Turns out in very rare cases (cough cough, when your name is Lydia Buschenfeldt), it can take up to 3 months for your heart to adjust to an ablation. And in the extra reassuring words of my fabulous (no really, he's awesome) cardiologist: "We don't really worry until January."

Stupendous. Anyone on a first name basis with Mr. Claus, by chance?

I've also been informed that I have officially been sent every single get well card in the Target 99 cents collection, and therefore I have reached my limit for medical bonanzas. So my goal for the month of December is to stay at least 100 feet away from anyone holding a knife and a needle, and whining about the diminutive nature of my veins.

I'm 8 days in, so far so good.

And if this goal should extend to, ya know, more than just December...I wouldn't be mad.

Just saying.

But more importantly, anyone want to meet up?

I'll drive.


Sunday, November 16, 2014

Under Construction

Do you ever have those moments where you stop, slap your hand to your forehead, and realize that you had the PERFECT Halloween costume, and you didn't even know it?

(No? Hmm...maybe it's just me...awkward...)

People. I was dressed up as a Jack-o-lantern on Halloween, and I had no idea! I was so busy adjusting to my state of permanent robot, that I didn't take advantage of the fact that I had a giant hole in the center of my abdomen!

Quite sad. I could have stuffed it with pumpkin seeds, or painted myself orange, or something fabulous!

Because clearly an adult in her 30's painted orange with her arm in a sling, a robotic heart named Penelope, and an abdominal hole full of pumpkin seeds is totally normal...

So I have a hole. In fancy-schmancy words, it's called a gastric fistula, and if we are being more specific, I have essentially created my very own permanent highway from my stomach to the outer world. I can put my dinner on my abdomen, without ever using my hands!

I know, I know! My resume just got a whole lot cooler! I mean, when was the last time you could say that you grew your own highway?

Autograph signing will resume tomorrow. Be kind, I tire easily.

It goes without saying that this is not exactly "the norm." In fact, the medical community has gone out of their way to make sure I really understood the 2% factor over the past 3 weeks:

"Ma'am...this is the radiology clinic. I've been the head technician here for 11 years, but, um, I've never heard of this test, never done this test, and don't have the materials to DO this test...uh...sorry?"

"Wait...what body part are we doing this test on again? Is it a rectal fistula?"

[Insert mild silent freak out over the phone. Um NO very kind sir, it is thankfully NOT.]

"Ok so it looks like you are swallowing this barium to test for a gastric fistula...where is that again?"

"So we usually give our patients a packet of information about the procedure...but...uh...for this we don't actually have one..."

I think I need a new business card that I can hand out every time I meet a new medical professional:

"Lydia Buschenfeldt: Surprising the world with the rare and unusual since 1983. High maintenance, with a side of green juice, and a splash of glitter."

(Clearly written in sparkly font. With bedazzled adornments. And maybe a giraffe.)

Keeping that business card in mind, I'm having surgery.
Again.
On Wednesday.

All of the tissue that has created the fistula will be removed, and then they will sew me up from the inside out, stomach to skin.

Anyone want to join?

Penelope and I did an excellent job of confusing everyone in the surgeon's office, when I showed up 5 days post pacemaker surgery in a sling, moving a bit more like the tortoise than the hare, and requesting to see a surgeon about the hole in my...abdomen.


This really is excellent prep for the holidays, right? I'm losing a portion of my stomach, getting a bit of a tummy tuck, and recovering on a clear liquids diet...bring on the stuffing! Bring on the pie!

Or...broth?

So while some people recover from pacemaker surgery with, say, resting or watching movies. Others may be so productive as to take up knitting or reading an entire series. I, on the other hand, recover by creating another situation from which to recover. What can I say, my dad didn't refer to itty-bitty me as "Boo-Boo" (in reference to the massive consumption of bandaids) for nothing.


Under construction, my friends. Restarting my hard drive, one body part at a time.

(And some twice. Or maybe three times.)

It may not be what I planned, and it may not be what I had hoped for, but I'm ready to find smoother roads to travel. Ladies and gentlemen, it's time for this highway to be permanently closed.

Grab your hard hat Penelope, we're going in.








Monday, November 10, 2014

A New Bundle of Joy!

Friends!

We have a new member of the family!

She is just a wee little thing, and in no time at all she has completely captured my heart!

Introducing, Penelope the Pacemaker.

Oh, bliss!

We named her Penelope...

because...

well...

um...

Hello? Alliteration? There is no greater literary device?

Duh.

[What? You DON'T spend time googling "names that begin with a p" while YOU are recovering from surgery? Dude, you are missing out.]

Like many new arrivals, Penelope made a grand, and somewhat off-script, entrance. The plan was to simply slip her under my chest muscle.

(Yes, the word "simply" doesn't often go with "under my chest muscle" but work with me here.)

Instead of slipping into place, the medical team ended up having to slice and separate my chest muscle for placement. The good news is that they thoughtfully gave me some medicine for the pain...that I ended up being allergic to said medicine is neither here nor there...it's all about the intention, yes?

The even BETTER news is that this has all been so much fun that I signed up to do it every 10 years!

You know what they say about bundles of joy - you never remember the pain!

After dear little Penelope made her grand arrival, we spent some time in the hospital so I could introduce her to everyone. Also so I could lower the average age on the progressive care unit by a good 40+ years.

In fact, when I called the cardiologist a few days after surgery, I followed directions and gave them my birthdate and name for identification. When I asked if the very kind woman needed me to spell my last name, she was especially thoughtful to remind me that "no dear, you are the only one in the system born in 1983."

Stupendous.

In other news, I'm pulling for a remake of the Jetsons. Ooooo perhaps a musical remake with jazz hands and tap shoes?!?! Clearly I would star as Rosie the Robot.


(On second thought, the tap shoes could prove problematic...)

The day after Penelope was introduced to the world, the Biotronik representative came to my room to check her out. The man kindly chatted with me as he was pressing buttons on a computer.

And then my heart started to have a dance party.

PEOPLE.
The man controlled my heart by punching buttons into a computer, all while standing 10 feet away.
AND, get this!
After my first device check in 4-6 weeks, Penelope can have her check-ups via TELEPHONE.
I hold up my phone to my heart, and her stats are transmitted via phone.

I. Am. Rosie.

Penelope is not a fan of any source of extra voltage...so I'm going to have to finally put a stop to my habit of spending so much time with the ignition of my car, and operating power tools.

Always did have a soft spot for the miter saw.

I did a bit of multi-tasking during my day at the hospital spa, and also had a catheter ablation. This procedure used cryogenics to freeze a portion of the wiring around my heart, and treat AV Nodal Re-Entrant Tachycardia. I've had some funny heart rhythm dance parties in recovery, but not all robots adjust overnight, and let's be honest - Penelope is cause for hearty applause, yes?

It also appears that the medical world got a little bit nervous that they wouldn't get to see Penelope and me on a regular basis (gosh, it's always about her!)...so to reassure them, my feeding tube stoma decided to burst open two days after my surgery.

Rest assured, this happens in 2% of patients.

Some people recover from heart surgery by lying on the couch and reading magazines...I like to add in fun things like esophagrams, fistulagrams, and a visit to the friendly neighborhood surgeon.

(And yes, my dreams have been dashed to discover that neither the esophagram, nor the fistulagram, include anything similar to the opening of a musical greeting card. They don't even include glitter. This medical world is a SHAM.)

I know it's November, and the start of a busy holiday season (I saw Santa the other day. It was November 6th?) but if you had a spare moment or two to think some good, quality "no surgery" thoughts, Penelope and I would be most appreciative.

But perhaps more importantly, friends, we have a bigger and more difficult assignment.

T-minus ten years to think of a new P name!


Wednesday, October 22, 2014

Pulling the Plug

PEOPLE.

Today was sort of epic.

Scratch the “sort of” part.

THIS happened:



You know what’s NOT under that gauze?

A feeding tube, that’s what!

(Also, I just bared my midriff on a public forum…does that make me a reality tv star now?!?)

People. I pulled the plug!

Well…if we are being technical, I didn’t do the actual pulling, but work with me here.

It’s a bit confusing, as medically speaking, I don’t really have anything even remotely resembling a clean bill of health. That being said, I haven’t used the tube for nourishment in about a year and a half (woop!), it’s chronically angry and inflamed, and it poses a big infection risk for my upcoming surgery (more about that in a sec). 

Really the only difference between now and three years ago, is that I have figured out how to nourish my body.

I know, I know - it’s shocking, really! They told me to eat only broth, Ensure, Carnation instant breakfast and mashed potatoes, and I plummeted 30 lbs. Can you believe it?!?

(Really Microsoft Word, you need to invent a sarcasm font. I’d use it daily)

My diet now is certainly limited (understatement of the century), but it nursed me back from “failure to thrive” land and enabled me to say ciao to my little friend the feeding tube earlier today. So for that, I feel I owe a personal, heartfelt thank you to the indomitable spirit of the sweet potato, and the ferocious hum of my Breville juicer. Thanks pals.

The only downside of today’s epically fantastic plug pulling is the fact that the replacement tube that came in the mail a few months ago is...prepare yourself…glow in the dark.

Yep. Glow. In. The. Dark.

They now make feeding tubes glow in the dark, "to ease the burden of nighttime feedings.”

(And yes, don’t think it didn’t cross my mind to change my tubes last night so I could enjoy one night as a glow in the dark 31 year old adult…hellooooo Halloween costume!)

Also notable, can we discuss how much more room I’m going to have under my bathroom sink now?!?




In other news, my cardiologist and I are in a fight.

Next Wednesday I’m having a little heart makeover - catheter ablation and pacemaker surgery.

(Some people go to the spa for a makeover, others to the hospital…totally normal. I wonder if I'll wake up with cucumbers on my eyes?)

But here is my beef: my cardiologist won’t let me bedazzle my pacemaker prior to surgery.

Um, hello! How amazing would it be to get an X-ray with a bedazzled pacemaker???

Can we say BLING!?

But alas, he stands firm in his denial of said bedazzlement. Something about hygiene.

Lame.

I also requested a laser that would shoot off beams through my skin every time the pacemaker fired.

Fireworks all the time! Who doesn’t love the Fourth of July year round!?

No such luck.

On the plus side, the whole "permanent" nature of a pacemaker gives me time to think. In 7-10 years when that little heart robot needs to be replaced? 

Rest assured, friends...I'll be ready.


Monday, October 6, 2014

Dancing with the Dragons

A few years ago when I first went out on disability, a dear friend gave me a stack of some of her favorite young adult books to read. I read them all, and being the rockstar literary agent that she is, they were all absolutely perfect for me. I read two of them several times.

One of those books was Donna Cooner’s Skinny. If you haven’t read it, please pause in the reading of this blog post and get cracking. It’s incredible. And brilliant. And inspiring. And…just go read it now.

(No really, skedaddle!)

The other was The Fault in Our Stars.

I devoured John Green’s masterpiece the way you hug a friend after a long time apart. It was that feeling as if the book had been written just for me, and I held on page after page, again and again.

It wasn’t written just for me in the subject matter, and it wasn’t written for me in the age range.

(I often think I can still blend in with the “young” crowd…until I actually spend time with them. Married. In bed at 9:00. Decidedly non-angsty. In my 30's?)

Anyway.

The book is often labeled as a teen drama about two kids with cancer, and yes, that is the subject matter.

But it’s not the point of the book. At least not to me.

The book is about love, and life, and the true gift that it is to live, and breathe, and walk this beautiful world for as long as we are able.

John Green’s language is pure, and honest and so very raw. 


These words, my friends, are so very, painfully, true.

Pain demands to be felt. You cannot out run it, nor can you pretend it’s not there.

You can try, sure, we’ve all tried to ignore moments of pain. But sooner or later, pain comes banging down your door and overstays its welcome, like the most oblivious houseguest of all time.

A few months ago, my neurologist ordered a whole long litany of neurological and cognitive functioning tests. As soon as I finished them, I felt defeated. They had been hard - even harder then I imagined when my doctor initially asked about my memory, attention, and processing.

But it’s one thing to know these things in your head. It’s one thing to find your phone in your shoe rack, and open 18 windows in your browser in 10 minutes, and forget the names of people you have known for years. You think that you are just stressed and tired, and maybe this is just what happens in your 30’s? 

Maybe everyone switches the beginning of words all the tamn dime?

It’s quite another to see it on paper.

My neurologist didn’t even want to show me the results. 

My brain may not be in contention for a Rhodes Scholarship anytime soon, but I understood enough to know that she wasn’t hiding the paper because my results were top-of-the-charts awesome.

At first I thought that maybe I had been like this my entire life, and that I’d been adapting all of this time. I think humans have an incredible capacity to adapt to life as they know it, and for a fleeting moment I thought that maybe that was true for me. So my processing wasn’t the best…maybe that’s why I’m more right brained anyway!

Instead of smiling, and indulging me in some sort of art and music related delight, my neurologist sat down in the chair beside me.

She took my hand, and gently sighed.

“No honey, with scores like these, you wouldn’t have graduated from college.”

Oh.

I’m sure she said other things too, but my less-than-fantastically-functional mind went completely blank.

I’m going to go out on a limb here and wager a good guess that my brain functioning showing steady decline is probably not something I should use to beef up my resume.

Extensive knowledge of medical testing? Yes.

Significant decline in cognitive function? Ixnay.

To be honest, my first emotion was embarrassment. Truth be told, I was mortified. 

How can I admit this to my friends and family? They are all smart, inventive, and driven individuals…how will I fit in? 

How can I tell my dear, sweet husband that while our friends are having babies and climbing mountains, I recently had to pull a piece of mail out of the recycling bin to remember our house number?

It was as if an imaginary force (also known as the mysterious minions that reside within the confines of my body) had taken me by the invisible suspenders, and thrown me like a shot put away from my family and friends. As if the isolation that was already there had been doubled, in a matter of seconds. 

So I did my best to stuff it down. To push it into the far confines of my soul and continue on. Just because my daily existence closely resembled herding a litter of kittens, didn’t mean anything had to change, right?

Make that herding a litter of kittens with a seriously intense case of fleas.

Anyway.

This didn’t have to hurt. It shouldn’t hurt.

(I really do think the word “should” needs to be deleted from our vocabularies. It gets you nowhere but mental angst…just saying.)

But the thing about pain…it demands to be felt.

It won’t take no for an answer. It has all the persistence of a spider building its web, and none of Charlotte’s charm.

So I begrudgingly felt it. I opened my doors and let it wash over me in strange, emotional waves. And after awhile, I expected the waves to slow down, and maybe to stop, but like a bad case of poison ivy, it just wouldn't go away. 

I felt it, I'm feeling it…and no matter how many times I stamp its passport, it won’t leave customs.

So I’ve been noodling, as I do, for quite some time.

And today in my yoga class, in the middle of a balance pose (flamingo, to be exact), my teacher mentioned something about fear.

I believe it was in reference to the fear of falling…but in that moment it hit me like a ton of bricks.

I am not just in pain. I am overcome with pure, honest, extraordinarily raw fear.

Huh.

Perhaps I should stand in flamingo pose more often.

My brain is in decline, and I’m terrified.

...


There, I said it. 
It's out there.
I'm still in one piece.

And to be honest? I feel better.
There's something about giving your fear a voice that is oddly cathartic.

I think fear can be helpful, and revealing, and altogether healthy for a time...but I also think ultimately we get to decide whether we will wear our fear like an exotic accessory, or a soaking wet sweatsuit.

And we all know, I prefer the bedazzlement.

I am scared, yes.
But I will not let my fear define me, nor will I let it chase me into a rabbit hole of darkness.
My mind may be going, but my heart and my spirit are not, and I have a lot more living and laughing and loving to do on this beautiful planet.

So guess what, world?
I’m scared.
But stored up fears do not strengthen us, they only break us down, and I have many more adventures that lie ahead.

I said it.
It's out there.

I'm dancing with the dragons, and I'm going to be okay.




Sunday, August 24, 2014

Breaking Records

Friends! Big news!

I broke my record!

(Drumroll please…)

Previous record: 14
New record: 17.5

17.5 vials of blood, that is.

Smashed it!

And the .5?

Evidently my left arm has decided to close for business after years of blood draws and IVs, and has built a blockade of scar tissue. After it took the phlebotomist 5 minutes to fill half of a vial, we decided it was time switch arms.

After all, at that rate it would have taken approximately 85 minutes to draw 17 vials of blood.

No, thank you.

On the contrary, that would ALSO have been a new record…

To say I am back in my starring role in a medical detective series may be an understatement.

In fact, the past few weeks make for a nice little counting book:

1 Electromyography
2 Neurological studies
3 Cardiac tests
4 Visits to my friendly neighborhood phlebotomist
5 IV’s
6 Doctor’s appointments

Oooo, or perhaps it would be better sung backwards like the “12 Days of Christmas?!?!”

“Fiiiiiiiiiive intravenous infuuuusssionnnnssss!"

Take that, golden rings.

Needless to say, it’s never dull around here. In addition to smashing records left and right, I also got myself a brand spanking new diagnosis code!

[If only people threw parties for new diagnoses…fiesta all the time! Sweet potatoes for all!]

ANYWAY.
Recently, I had a tilt table test. I’ve had one of these before, but this one was much more extensive and was monitored on multiple levels.

If by multiple levels, I mean I could have walked into a bee hive and been protected, as nearly all the surface area on the top half of my body was covered by sticky, beeping, pulsing things.

After being strapped to a freezing cold hospital bed with a footboard, the bed is raised to nearly perpendicular.

And then you just stay there.

Strapped to a board.

Unable to move a muscle.

Chatting with the cardiologist, who tells you to “get comfortable.”

I mean, you lose feeling in your arm as your blood pressure cuff squeezes every minute or so, and the pulse oximeter decides you are dead here and there because the bed is so darn cold, but other than that you are totally comfortable laying against the pillow made of plastic bags...

In any event, while this whole process is happening, the nurse and doctor are watching a little screen behind me (so sneaky!) and monitoring my heart rate and blood pressure.

And in my case, literally watching the blood drain out of my upper body and into my legs, much like a sand timer in a board game.

Reallocating resources? Eh?

I also had an IV, where the nurse was supposed to give me something to put my body in a dehydrated state halfway through the test.

Honor roll student that I am, they didn’t even need it!

In fact, my blood pressure took a trip to around 70/40 and instead of watching my heart start to beat like crazy to fix the issue, my medical duo watched my heart rate take a mini vacay to a whopping….31 beats/minute.

On second thought, I’m a pretty big fan of those bed straps.

So anyway, dysautonomia.

Malfunction of the Autonomic Nervous System.

Also known as, when your body doesn’t do what it is supposed to do automatically.

Didn’t we already know this? Yes - but now we have some more specifics.

Specifics as in, my organs haven’t been getting enough blood. For years.

No biggie.

So let’s review my stats:
Retired
Hates to be cold
Goes to bed early
Eats exclusively mushy food
Attends adaptive yoga
Owns several pairs of compression socks
Recently found her phone in her shoe rack...

Just in case those statistics didn’t already confirm “85 year old woman,” my cardiologist thought he’d go ahead and give me his instructions.

A pacemaker.

On second thought, 31 is the new 90?

Evidently my feeding tube is lonely. 

As hesitant as I was to continue decorating my midsection, after further research and discussion it does seem like the little gizmo would make a tremendous difference. Unlike a traditional pacemaker that reminds your heart to beat, this pacemaker would give my heart instructions when there is a change in blood pressure, therefore supplying my organs with adequate blood - a novel concept!

Before I further my goal towards robot status, my medical fan club needs to do a few more tests to fine tune the details. How there are tests I have yet to check off the bucket list is beyond me, but regardless, this Wednesday I'll have a wire snaked up my leg and into my heart for an Electrophysiology Study, followed by assorted others in the next few weeks. 

What? That's not how YOU celebrate hump day? 

Weird.

More importantly, do you think Easy Spirits come in silver sequin?