Sunday, March 20, 2016

This Just In: Life Ain't Stable

Oh hey, friends. 

It's been quite awhile. 

I've missed you. And writing. And this blog. 

Life took a turn for the crazy, but here we are yet again.

After the big genetic showdown, my plan was to take a few weeks away from the medical world to just be. There are a lot of unknowns and "to be determineds" and I wanted some time to let it all soak in. Genetic testing was an ultra-marathon, certainly not a sprint, and I was ready for that glorious post-race recovery. 


Rather than soaking in epsom salt baths and enjoying a luxurious massage, my immune system took that whole "time away" thing a wee bit too literally, and took one heck of a vacation over the past 3+ months. Evidently I need to be more specific with how I plan on spending my "off" time. 

A week before Christmas I picked up a stomach bug, followed a week later by an upper and lower respiratory tract infection, that turned into pneumonia a few weeks later, which then caused me to break a rib, which was capped off 2 weeks later with a bulging disc in my lower back. 

Then, just when I thought I was coming up for air (and could actually walk without looking like a lame emphysemic penguin), my nonexistent thyroid levels took a swift and rapid trip south, causing my endocrinologist to nearly fall off his chair with a glance at my lab report, and inquire "how on earth did you do that?!"

(Which, by the way, is the 2nd time in 2 weeks I've been asked that question by a doctor...does this mean I get a refund on my copay?)

Shortly after the Ghost of Thyroid Past vigorously stirred the pot, I added two more rounds of sinus infections (or rather, never got rid of the first one), which brings us to this week, when I got a call to tell me that my doctor had called in my protocol to the pharmacy.

"Oh...protocol for what?"

[awkward long pause]

"Didn't someone call you with your test results?"

"Nope, that's why I've been leaving daily messages."

" moment please..."

[second awkward long pause]

"So...normally the doctor would call you, have a rather extensive internal staph infection."


(And for all of you mentally calculating how long it has been since you've been in close proximity to someone with a giant staph infection, I have been assured by both medical professionals and Dr. Google that I'm not contagious. Just full of my very own set of antibiotic resistant bacteria. No big deal.)

People. I'm tired. 

(And full of bugs. Just saying.)

I really wanted to write a post about how I'm back in action! and things are great! and I'm taking 2016 by storm! but instead it seems that 2016 IS a storm. And maybe that's why it has taken me so long to come back to my blog, because maybe sub-consciously I wanted to wait until I felt like life was stable.

This just in: Life ain't stable.

Genius that I am, I thought the great immune system vacay was a perfect time to a) release a brand new makeover of my company's website (check it out!) and b) buy our first home. 

Just call me Einstein.

Through the extreme generosity of our families, Mr. Restarting My Hard Drive and I recently made our 6th move in 10 years into a townhouse of our very own. It has been a whirlwind of excitement and packing and boxes and unpacking and more boxes as we settle in and make it our home. And I'm not sure why this made sense in my head, but somehow I had this image of moving into our new home, and turning 33, and bursting with health and vitality.

It wasn't logical, I know. But I'm human, and a ya know, not the best combination in the logic department.

I had this image of being superwoman and whipping both my business and new house into shape, all while exuding energy and strength. Instead I'm full of antibiotic-resistant bugs, and had to rely almost entirely on friends and family to move my belongings, so as not to bulge a disc or break a bone or pass out in a heap.

Not exactly on point with the illogical dream plan.

It's like listening to the same album over and over again, and never getting past the 3rd song.

Over the years I have written very little about the invisible behemoth of shame that resides on my shoulders. I suppose I carry it with me wherever I go, but somehow I've always felt like writing about it would give it more worth than it was due, so I've kept mostly mum. However, nothing unleashes the beast more than digging through all your belongings, and unearthing a lifetime of memories.

And trust me, I so wish it didn't.

I often talk to my clients about shedding what doesn't serve them, and like many people, I know it is easier to share advice than follow it yourself. I believe, and have written extensively about, the fact that we all have a choice in how we live our lives. We cannot decide what happens to us, but we can always decide how we respond. But, I think shame falls into a bit of a gray area in this department - not clearly defined by chance or choice, which is why it has been on my mind lately.

I don't want to be ashamed of the boxes of unused running clothes, or dust-collecting children's books. I don't want to feel a twinge of pain and embarrassment every time I get a medical bill in the mail, or when people ask me when I'm having kids. I don't want to constantly think about the emotional and financial burden I have been to my husband and family.

But I do. Every day.

And I know it doesn't serve me.

I am under no illusion that making some grand blog-post proclamation that I am shedding my skin of shame will actually make it happen, but I think there is something very powerful in sharing your intentions. I can't start off my 33rd year in a new home with health and vitality, but I can certainly decide to start it with a renewed focus on exuberance and self-worth, despite the never-ending roller coaster of my immune system.

And that is exactly what I plan to do.

So no - life most certainly is not stable, and you know what? It may never be. I raise questions and provoke befuddled looks from the medical community and challenge every pharmacist I've ever met. I look fairly normal, but am put together with a lot of stitches, glue, and robotic parts. I'm not living the life I planned, but I am bound and so very determined to live a life that has purpose - no matter the number of infections or breaks or bulging discs.

This is who I am.

Hello, world.

Sunday, October 25, 2015

The Missing Piece

I have always wondered what the moment would be like.

When after years of unanswered questions, false hope, and dead-ends, I’d have a definitive diagnosis.

I wondered what emotion I would feel first.


Probably a little bit of everything, I guess. 
Most of all, I knew it wouldn’t be easy. 
If the diagnosis was going to be easy, it would have happened years, volumes of blood, and 23860948 different medical institutions ago.

What I didn’t know, is if I’d ever have that moment.

In all of the years and tests and evolving diagnoses and hail-mary treatments, there is only one thing that never changed. 
I have never wavered in my belief that my medical obstacles had a cause. 
Not once.
I have wavered in many things, but not the proverbial connection of my dots.

I don’t believe our bodies break, in the way that mine has, for no reason. 
I don’t believe that my 27 separate diagnoses are not connected.
I never have.
And I’ve been waiting. And learning. And researching. And waiting some more, to connect the dots.

I knew there was a good possibility I would wait for the rest of my life. A nearly complete puzzle just missing that very last piece.

(Even after you've looked under the bed, between the sofa cushions, and even in the trash.)

But, an appointment in April changed everything.

Approximately 37 seconds after meeting my new immunologist, he referred me for whole exome sequencing. I had asked for this testing many times over the last few years, but the medical consensus was that it wasn't warranted. This doctor, however, shared my curiosity, and even more fortunately, he happens to be married to the president and head physician of the Rare Disease Clinic.

A few weeks later, I parted ways with 25 vials of my blood, and had the most bizarre physical of my life. In a genetic evaluation, you are scrutinized on a whole new level - every limb was measured,  every single freckle and mole had to be counted, and every single appendage had to be examined, down to the size and shape of my nostrils.

(Shaped like a bean...ya know, just in case you were wondering.)

They watch you move.
They watch you talk.
And then you wait. 
Genetic testing is most certainly an ultra-marathon, not a sprint.

I didn’t blog about this process, but not because I didn’t want to. 

(Trust me, when your doctor is 5 feet tall and has to measure your height and wingspan while you are 6 feet tall and completely stark naked, there is a LOT of blog-worthy material.)

I didn’t blog because I just couldn’t. 
As much as I told myself not to get my hopes up, I’m human. 
The thought of having to come back empty-handed again was just too much to swallow.

Then, a few weeks ago, I got the call to come in for results disclosure. After unsuccessfully offering to be there in 5 minutes with cookies, wine, and possibly a pony, I weaseled my way into finding out over the phone that they had found something. (Weaseling possibly exacerbated by the fact that they called me…and THEN told me that the doctor was away for 3 weeks. You're kidding me, right?)

Three weeks later, it was everything and nothing like I had imagined. I sat on the couch, long legs tightly crossed and knocking into my husband's equally long limbs. I had my moose notebook out, and was anxiously playing with my purple pen. The doctor sat across from me, stack of papers in her hand. The genetic counselor sat at the table with my 8-inch thick file.

I had pictured all of this. I had expected it. 

What I hadn't expected, were the words that followed. 

The words that at first computed as sentences quickly faded to a blur, as I scrambled to keep up.

Never been seen before.

It comes as no surprise that my diagnosis is rare…but I never imagined it would be quite this rare.

I have not one, but two, likely spontaneous genetic mutations that have never been seen before.

In 7.3 billion people, there is literally only one of me.
(Or at least, of the population with access to genetic testing, anyway).

Both are progressive. Both are untreatable. Both are adult-onset disorders that appear in the 3rd decade.
Over-achiever that I am, mine showed up a bit early. Gold star for me?

The first mutation is a type of channelopothy. You may recall from high school chemistry, the experiment where you placed salt in water and then were able to conduct electricity. In our bodies, sodium and several other electrolytes are responsible for the the voltage that stimulates cells to perform their function. One type of my sodium channels does not conduct a current. Essentially, all of the parts are there, but the cord isn’t plugged in. This genetic mutation explains, among other things, the dysfunction of my autonomic nervous system - everything in your body that is supposed to happen automatically (heart rate, digestion, blood pressure, temperature regulation, etc.) Voltage-gated sodium channels are responsible for the rising of action in cells. If the voltage doesn’t occur, neither does the action. 

The second mutation affects my muscles. Fibrillin and Actin are proteins in our bodies that are supposed to bind to one another to maintain the structure of the cell, and further the process of myogenesis (the creation of new muscle tissue). My Fibrillin does not function as it should, causing myofibrillar and/or distal myopathy - aka my muscle fibers look all kinds of funky and are weakening. Over time, my muscles will become weaker and weaker, likely including my heart and lungs.

On the plus side, now that I'm a mutant, I have a built-in Halloween costume for life. 

To say that this is a lot to digest, may be the understatement of the century (especially given that I don't actually digest anything...)
For many days, I walked around in a blur, simply getting myself to the next thing on my calendar. I went through the motions of daily life, finding myself staring into space at my desk with no recollection as to why I was there.

I tried to wrap my head around what this truly means for my future. My dreams. My husband, and my family.

Perhaps the most bizarre of all is the lack of actionable steps. I have always been a well-researched patient, diving head first into each new obstacle until I understood it enough to explain it myself. In this case, there is nothing to research. All I can do is learn how the genes are supposed to function and work backwards. I share one mutation with a person in France, but nobody has the other one and nobody has both. An orphan disease is defined as fewer than 200,000 reported cases. In this situation, it's a party of one. 

(Now accepting submissions for the official "Name My Mutations" contest.)

I had told myself that I wouldn’t write a blog post until I could breathe deep, fully embrace my latest new normal, and move forward.
So for the past 9 days, I continued on with the motions of life, staying quiet and doing my best to appear normal.
But, I soon realized, that was an awfully lonely place to be.

There is no doubt in my mind that I will be fine. After all, I have made defying odds a pastime of mine, and I have quite a lot for which I'm extremely grateful. I intend to embrace this beautifully unexpected life that lies before me - and what a glorious, front-seat-of-the-rollercoaster adventure it will be.

Someday soon I will realize that I’m okay. 

Just maybe not today. 

And perhaps the biggest challenge of all, is accepting that this is okay. My muscles and vision of my future may be weak, but it does not make me weak.
It’s okay that I’m not feeling like myself right now.
It’s okay that I cycle through every emotion imaginable in a 5 minute period.
It's okay. 

Right here. 
I'm right where I need to be, and tomorrow, I'll try again. 

After all, sometimes even rare robotic mutants need a break. 

Wednesday, October 7, 2015

She Used to Be Mine

I had almost finished a post when I heard the song. 

My musical idol, Sara Bareilles, recently composed a new musical, "Waitress," (think stage adaptation of the movie with Keri Russell) and the first single from the musical was just released. 

"She Used to Be Mine” stopped the air in my lungs.

I listened, twice.
Then one more time.
Then, without another thought, I selected all, and hit delete.

I had been trying to write about Septembers. To explain my absence from writing, and how my heart triples in weight every year. I’ve been trying to write about it since August, but couldn’t get the words on the page. Then this song, this magical, melancholic, deep, raw, honest song, helped me find words for what has been stuck for so long, and I had not been able to find the words to say. 

If you have seen the movie or know the story, you might be wondering/panicking how I could possibly relate - I am not a waitress with a super power for baking pies, nor do I have a horribly dysfunctional marriage (for which I am extremely grateful...although if the Pats go to the Super Bowl again this year, all bets are off). However, the main character finds herself in a position in life that she didn’t expect and didn’t necessarily ask for. She has to come to terms with the things that she feels like she has lost about herself.

"It’s not simple to say,
that most days I don’t recognize me”

Sometimes I feel like I spend most of my time hanging out with someone I don’t know. I move through life in this body that I don't understand, with likes and dislikes I don't recognize. It needs things that I don’t know, and notes my lack of comprehension 99.9% of the time.

This became even more clear when an invitation recently arrived in my mailbox. My high school built a new arts building, and they named it after the single most extraordinary teacher I have ever had - Chris Wagner, my art teacher. They invited all of her former students to the dedication.

(And yes, that’s the caliber of teaching I am referring to - they built and named a building, just for her. No big deal.)

My old self would have RSVPed the very first day. I would have been beyond excited to see the building, and many of my favorite teachers and former classmates. I would have dug out my Varsity Art t-shirt for the event.

(We were State Champs. Admit it, you're jealous)

Instead, I froze. 

I let the invitation stare back at me from my desktop for months.
What do you say to people you haven’t seen in 15 years? 
How do I respond to questions about kids and jobs and travel and life?  
The response “treading water and staying alive” is a bit of a buzzkill to lively conversation. 

(Although, I’d like to think that all participants of the event also share my proclivity for staying on the alive side of things...)

Attending social events in a body you don’t know, is a bit like constantly parading around with a new partner. There’s nervous anticipation of how he/she will be received by your community, and the unsettling knot in your stomach that you don’t actually know what she’ll say or how he’ll feel about the event.

“It’s not easy to know.
I’m not anything like I used to be
Although it’s true
I was never attention’s sweet center,
I still remember that girl”

The truth is that I’m not the person they remember. 
Not even a little bit. 
I don't teach or sing, swim or run. I'm not making art, nor have I traveled the world as planned. I don’t have stories from my classroom, nor can I talk about this year’s Caldecott winners. I can’t honestly tell you the last time I picked up a viola.

In fact, the person they voted "most friendly" spends most of her time alone. 

Its difficult to admit, but I'm not proud of this new person in my life. 
I hope someday I will be, but I don’t think I know her well enough, yet. 

It’s much like a canvas on an easel, waiting patiently for the return of the artist. But instead of a colorful and evolving composition, mine has been haphazardly smeared with a fresh coat of gesso to cover all that lies beneath. As if, with one quick swipe, all that had been growing was flattened.

And that feeling, of walking into the studio expecting to continue work on your life’s masterpiece and instead finding it dripping with thick paste, has yet to go away.

I want to tell you that it has. In fact, I’d go so far as to say that I’m ashamed that it hasn’t. 
It has been 5 years.
FIVE years!
Get a grip, Lydia.

“She is hard on herself
She is broken and won’t ask for help
She is messy, but she’s kind
She is lonely most of the time
She is all of this mixed up and baked in a beautiful pie
She is gone, but she used to be mine"

She used to be mine.
This person that I knew, inside out and upside down, used to be mine. For better or for worse, for awkward growth spurts and an unprecedented long run with orthodontia, she was mine.


I miss her.

I took a deep breath (or ten), put on my brave face, and went to the event. Buoyed by a dear friend and fellow varsity art team member, I nervously navigated the waves of familiar faces.

What a gift.

To be able to be there to honor someone who had indescribable impact on my life. 
To give her a big hug and say thank you.
To see my beloved art history and math teachers, and give my theater teacher a big hug. 
To joke about babysitting for my teachers' children, and laugh about memories of trips abroad.

I almost let fear and expectation get the better of me. I almost missed an opportunity that won’t happen again.
It was a stark wake-up call. My life, is a gift to be lived - not placed on the bookshelf until it looks exactly as I imagined.

“’Til it finally reminds her to fight just a little
To bring back the fire in her eyes
That’s been gone but it used to be mine”

On the surface, I’m not the person anyone remembers - myself included. But maybe beneath the thick layers of gesso and change, it's still the same composition. Maybe if I scratch hard enough on those extra coats of paint, I can still find that girl. Maybe, this is my chance to create something new.

She was gone, but I hope she’s still mine.

Tuesday, June 16, 2015

What I Almost Forgot

Sometimes I think I must be part of some gigantic scavenger hunt.

As if the next big reality series is going to be The Grand Medical Adventure.

The contestants search for a diagnosis (bonus points for guidance and treatment), and leave as many clues as possible along the way, stopping at every medical facility in sight. 

That MUST be what I'm doing...right? Any minute now, Ryan Seacrest will pop up behind that vacant chair in the waiting room, I'm sure of it. 

My clue-dropping is somewhat alarming, if you think about it. 

There's a thyroid and salivary gland sitting on a shelf in Rochester, Minnesota.

A perfectly-formed gastric fistula residing in Fairfax.

A chunk of a hive hanging out in Chantilly.

Four pieces of my left bicep taking up room in Baltimore.

A swab of my stomach lives in Philadelphia, Fairfax, Baltimore, AND Rochester.

An unfathomable amount of blood and urine resides in roughly 1/4 of the United States.

And I most recently left 44 vials of blood, a giant jug o’urine, and 3 chunks of my skin in Cleveland, Ohio.

And let’s be honest. I probably forgot something. 
(Maybe Penelope the Pacemaker is actually a tracker for the producers?!)

I’m going to NAIL this reality series.

Someone recently asked if I ever get tired of searching.

Obviously I looked at them like they had 7 heads. 
And 4 noses. 
And possibly a tentacle.

(Ok, definitely a tentacle).

And I kind of wish I still had that giant jug o’urine in my hand.

Just saying.

(Insert angelic face here…)

One would think with all of the clues that I have left all over the country, that I would have new information, but I don’t. In fact, all that resulted from 44 vials of blood was, “This is extremely rare. I can’t explain it.”

Oh but if I had a dollar for every time...

Sometimes I feel like all I do is give pieces of myself away, far beyond my aforementioned organs and blood - my career, my plans for a family, my savings, my voice, thoughts of travel, hopes and dreams. It is easy to get washed ashore by the tidal wave of loss that comes with chronic illness, particularly of the medical mystery variety.

And no matter how hard you fight against the current, you will always feel like you are being pushed back. As if the universe is saying, "sit down child, this doesn't concern you."

I suppose in some ways, the universe is right. I cannot outsmart or outmuscle the universe.

The question is, whether or not I can learn to move with it. In tandem on a bicycle built for two.

I don't have the luxury of giving up. The choice to stop searching and trying to understand the unexplainable is not an option, in light of living the most passionate existence I can. Putting my all into my life? It's a no-brainer. 

I recently had an entire day with nothing planned - no appointments, no business meetings, no labs, nothing. It was, perhaps, the first of its kind in quite some time. At first I felt an almost bewildered sense of confusion - what IS this magical place? What do I DO here? Mr. Restarting My Hard Drive was away, so I grabbed my green juice and started the day in my office, deciding that the only logical use of my alone time was sorting medical records, paying bills, and working on my business. It was a beautiful sunny Saturday, and I was wrestling with an overflowing pile of papers. 

I'm not sure what made me pause, but in one swift move, I put the papers back on my desk, grabbed my keys, and walked out the front door without looking back. I wandered lazily through a farmers market, oogling at the beautiful fruits and vegetables, fresh eggs and honeys. I chatted with my favorite farmer, and photographed exquisite purple beans.  I came home and cooked for hours - almond butter, peanut butter, coconut wraps, kombucha, grain-free doughnuts, and more. I listened to music. I took breaks to sit on the deck in the sunshine with a glass of kombucha (and a heating pad for my sore shoulders). I went for a quiet walk, and watched Ellen and Downton Abbey (obviously). I went to bed early, curled up with a book. 

A few days later, I spontaneously moved all of my appointments and spent a day escaping life at my favorite place on earth. 

There was a lot of this:

These days reminded me not only of the pure joy in the simple things, but that there is one tremendously important thing that I haven't given away.

I haven't given up what makes me, me.

It is so easy to forget, in the tumultuous sea of medical testing and travel, legal proceedings and growing a business, that underneath all of it - beneath the test tubes and needles, papers and unexplained questions, there is a person. A living, breathing, human being. 

Not a statistic. 
Not a medical record number. 
A person. 

In all of the chaos of the last five years, I nearly forgot her. I nearly gave her away, unknowingly allowing the ocean of questions to wash her to sea. 

I do not have the option of leaving The Grand Medical Adventure. It is my day-in, and day-out. But it's not who I am.

My name is Lydia. I love sunshine and horses, fresh food and music. I daydream about traveling with my husband, and I believe stars are there for wishing. I love to hike and bike and walk and swim, and I am my very best self in the mountains. I love to read and play board games on a rainy day, and I never knew how much I needed to write, to cook, to teach, to create. I believe in the healing power of food and lifestyle, and I adore cooking for those I love. I write in cursive, with fun pens and markers, and I have an extensive doodling practice. My family and friends are my greatest gift. I dream about having a caramel-colored labradoodle and writing a book. I love to laugh.

I had forgotten, but now I remember. 

I am not an unexplained question. 
I am not a binder of medical records, nor a pile of paperwork.
I am not organs on a shelf.

I cannot leave the ocean, but I can always splash in the waves.

Sunday, April 26, 2015

Waiting for the Whistle

In the game of life, there are no time-outs. 

There are no water breaks or substitutions. 

(Not even a complimentary orange slice to be found. A sham!) 

The referee doesn't blow the whistle at the first clap of thunder. There is no locker room to wait out the storm. 

In life, you stand in the storm and get drenched. 

And friends, I have to tell you, I am soaked to the bone. 

I have attempted to write this blog post a minimum of 17 times over the past month. Similar to trying to merge 5 lanes of traffic at once, when there is so much to say, the words come to a screeching halt. The proverbial bottleneck of medical reporting.

In the past month, I have received medical care in Massachusetts, Pennsylvania, Maryland, and Virginia. Next month, I will add Ohio to my list.

(Sidenote, how many states do you have to go to before you can warrant the purchase of a “Restarting My Hard Drive Tour" t-shirt?! And can they be sponsored by the bedazzler?)

I digress. 

My beloved neurologist called last week. (That’s not sarcasm, she really is the greatest) 

The conversation started with, "I didn't want to call you."

(Friendly hint, that's generally not a sign of free puppies. Or cookies. Or Ellen Degeneres showing up at my door. In short, it's not shorthand for all things magical.)

She went on to describe the results of my brain MRI and muscle biopsy. Two tests that were done to look for diagnostic clues, straight lines to connect the scattered dots. The tests were supposed to provide much needed information for the next steps. After she gave me the low down, I paused in my frantic note taking. 

"So, let me make sure I have this correct. Two areas of my brain are atrophying. My muscle biopsy showed that I have moderately severe neuromuscular degeneration with associated sclerosis. And on both accounts, we have no idea why."

She paused and gently sighed. 


The week went on to include a weakened immune system from the immunologist, a "fancy" new diagnosis from the urologist, dissolvable stitches choosing not to dissolve from the surgeon, and a new type of tachycardia from the cardiologist.

Cliff Notes:
  1. People seem surprised over the weakened immune system situation. I’m not sure where they have been the last 5 years of my life.
  2. I now have a urologist. I also have a pacemaker. And I’m retired. You draw your own conclusions. 
  3. How do we feel about, "Wow, I’ve never seen that before!” in tattoo format? 
  4. There is only one logical explanation for my new tachycardia. Penelope enjoys a good dance party. Obviously.
My medical shenanigans always tend to come in waves. I'm not really sure why, but there have always been somewhat predictable ebbs and flows. I rarely have one doctors appointment all by its lonesome on the calendar, and it is an unusual occurrence to be waiting for just one test result. They come in waves. 

This past one, however, was a tidal wave. 

And after weeks on end of 3 hour appointments, “getting reacquainted with the OR,” countless blood draws, lengthy “discussions” with my insurance company, travel by plane, train, and automobile, and general medical debauchery, I find myself standing in the middle of the field, chest heaving, and simply drenched. 

I keep waiting for a referee to run into my living room and loudly declare a time-out. Just a two minute break to catch my breath (and find a darn orange slice.)

But there are no time-outs.

This is it, the real deal, no whistles or striped shirts involved.

Some days, I want to put myself on the bench. I want to go back to the locker room, change into dry clothes, and call it a day.

But I can’t. 
I won’t.

I don’t know why my hard drive crashed. I don’t know what piece of the puzzle we are all so desperately missing. I don’t know why I’m on this journey.

I don't know a lot of things.

The only thing I do know for sure is that only I decide. 
I can hide under the bleachers, or I can shake it off and get back on the field (sequined sweatband optional.)

I have a life to live. It's quite the gift.

My favorite college professor had a small poster hanging in her office. I'm sure I've mentioned it before - I saw it nearly every day. The words resonated with me then, almost as much as they do now.

"The race is not to the swift, but to those who keep on running."

I'm tired.
I'm drenched.
I'm dodging lightening bolts.
And, I'm running. 

Let's do this, friends. Game on.

Tuesday, March 24, 2015

Keeping the Goal Alive...?

My goal for 2015 was to stay out of the Operating Room.

Well. I made it to March 23rd?

2 months and 23 days, baby! WOOOOO!!! 



I’ve decided this surgery doesn’t count as breaking my goal. 

And I make the rules, so ya know, yea…totally doesn’t count.

Reason #1: This was a test, not a repair.

On Monday I had a muscle biopsy of my left bicep. This test has come up for 4 consecutive years, but the medical community has never been sure enough to warrant the procedure. A muscle biopsy is done to diagnose neuromuscular disorders (specifically, in my case, mitochondrial disorders), infections that affect the muscle, and other abnormalities in the muscle tissue. After it came up for the fourth year in a row, by the 23049820398th medical provider, my internist decided it was time to check it off my medical bucket list.

So see…it was a test, not a repair. Totally doesn’t count.

Reason #2: I didn’t go under general anesthesia

And let me just say, rolling out of the hospital 45 minutes after the surgery ended is fairly glorious. In fact, I even made it the full hour and a half home from Hopkins before the numbing medication wore off. Booyea/OW.

On the other hand, I wouldn’t have turned down an option to maybe, ya know, NOT remember the feeling of chunks of my bicep being removed from my arm. A little colonoscopy twilight, anyone?

Just saying.

(No really)

Reason #3: What was removed will, in theory, grow back

After the four specimens of my “bulging bicep" were passed over my surgically-draped body to the pathologist, he asked me if I wanted to see them.

Obviously I said yes.

Moments later I found it extraordinarily crucial to turn to my surgeon, who was sewing up my arm, and ask if our bodies work like worms.

To which she paused, laughed, and said, “Clearly you were an elementary school teacher. And yes, the muscle will regenerate."

And for that I will send an extra hearty gratitude to the power of the human body, because let me just say (with respect to those of you with a weak stomach), the specimens were not small.

No really. It’s a wonder my entire upper arm is not missing.

Although, now that I think about it, my upper arm is still under a giant pressure bandage and hidden in a sling….


In other news, I’m pretty good at this arm-in-a-sling situation. In fact, this entire blog post was typed with my right hand, while my left hand is celebrating Halloween a bit early by dressing up as a pufferfish. I also got dressed all by myself today! It’s almost like I just had surgery a few months ago, or something. 


I told you this surgery didn't break my goal of staying out of the Operating Room.
As you can clearly see from Reasons #1-3, the goal is still alive.


Whatever people, I make the rules.

Wednesday, March 11, 2015

A Time to Celebrate

The combination of February and March has become a bit of an odd cocktail of sobering and celebration. 

A few weeks ago, I marked the four year anniversary of my proverbial "hard drive crash." 

Four years. 

In some ways, I feel like it can't possibly have been that long, and in others it feels like at least ten.  

It's hard to believe that it wasn't that long ago that I was 30 lbs underweight, lying in a hospital bed at Hopkins, consuming mostly egg whites, rice chex, and an occasional, er, steady stream of gummy bears.

Or when I went out to Mayo in 2012, I still had all of my organs intact. In my naïveté, I thought I would spend a few days in Minnesota and come home with a sparkly little cure. 

Looks like I was a wee bit off.

If it's even possible, I think the medical community is more confused by me now then they were four years ago. This very month, I'll see not one, not two, but three new specialists, along with adding a new procedure to my "glowing" resume.

(45 minute registration ending with the very last question of - “You don’t have a pacemaker, right?” I will now start introducing myself as Lydia and Penelope Buschenfeldt…you've been warned.)

I find that I spend an inordinate amount of time dangling between that place of peaceful acceptance and burning curiosity. I desperately want to move forward and live my life in whatever capacity I am lucky enough to do so, and yet, a combination of a progressive little mystery disease and several medical road blocks halt that process every time. The thing is - I don't inherently believe that our bodies break for no reason. I just don’t, plain and simple. I also believe that our bodies can heal if given the opportunity…which begs the question - what's standing in my way? What am I missing?

For four years I have traveled to doctors all over the country. I've been on countless pharmaceuticals, IV therapies, and herbal protocols. I juice and meditate daily, and I hang out with my favorite contingent of old ladies at adaptive yoga. I could write a guide book to alternative therapies. Even with the most restricted diet known to man, I would wager a solid financial estimate that I consume more green vegetables than most, and given my proclivity towards the dear root vegetable, I assure you I have beta carotene coming out of my pores. (It is truly a wonder that I am not orange) I live, sleep, eat, and breathe an unprocessed organic lifestyle, full of love, and hope, and deep breaths.

And yet, the questions remain.
The algorithm that just doesn’t make any sense - Why, when given every opportunity, does my body continue to throw logic to the birds?

How can I really, truly, devote my life to helping and healing others…when I, myself, am not healed?

Or is it because of my path to healing that I am able to do so?

Just more questions.

And so I keep looking, and learning, but most importantly - living. 
Living in the questions.

And that, my friends, is something to celebrate. 

I've never understood those people that hide their age, or don't want to celebrate their birthdays.
They just gloss on over them with a wave of the hand and an uncomfortable grimace.

It just doesn’t make any sense.

Yes, I understand the moment when you realize you have been out of college for 10 years and you can no longer lump yourself in with the “post-collegiate” twenty-somethings.

Or when you realize the little babies you babysat in 7th grade are in college, and your first little campers are married.

I get the fleeting nature of time.

But to truly hide your age and gloss over a birthday?!?
That I don’t get.

I will happily tell the world that this Friday I'm turning 32. 


The world has put up with my need for ponies, and markers, and mountains, and bedazzlement for 32 years! (Much obliged, by the way)

I’ve been given the opportunity to be ALIVE for 32 freaking YEARS!

Is there a better birthday present than the chance to live?

I know it’s not given to everyone, and it’s not a gift I take lightly. 

And so despite the questions and the off-road medical adventures, I’ll keep on keeping on - putting one foot in front of the other, taking a deep breath, and seeing where the path may lead. And maybe that’s where I can really and truly find, and stay, in the place of peaceful acceptance. For there is peace that lies in knowing you are doing the one thing you can - to keep going. 

And so I'll keep going. 
Keep trying.
Keep marching on. 

And I'll celebrate.