The In-Between

Hello, blank page. 

I know, it's been awhile. 

I have both desperately craved and strictly avoided you, knowing I needed to write and terrified of what may come out. 

What if it's all the same? What do I do if I come here to write only to acknowledge that nothing has changed at all?

What happens then?

Fall used to mean new shoes and pencils and shiny, happy students.

Somehow it has morphed into surprise surgeries, never ending GI treatments, and heart-lurching loneliness...and every year, it surprises me. 

What if the world knew that while there are people frolicking through apple orchards in flannel shirts and happily gulping down pumpkin-spice-everything with wild abandon, all I can think is "please please let's just get this over with before something else breaks?"

What if they knew that every year is harder, not easier, and that with every year of lasting permanence, it becomes more difficult and bitter to swallow? 

And why, why, WHY for the love of cinnamon buns and ponies, can't I just get over it?

It's embarrassing. 

Every year as the march towards September soldiers on, the dread settles upon me like a lead blanket. I am unable to hold my generally emotionally-stable self together. I don't even know this person, and I certainly don’t like her.

What if people knew? What would they think of me? 

What if they knew that when they ask how I am and I say that I'm okay, I really mean that I'm not really good, but I'm certainly not bad and I'm just stuck, forever stuck, in the in-between of "just okay?"

What if I am always here? In this place where some days I can't get off the couch and other days I go for a walk in the sunshine, and some days I am stuck in the bathroom and others I read a book and miraculously remember it, and most days I hold myself together just long enough to get to every item on the calendar before I fall apart into a heap. 

What if…that’s it?

What if being okay is all there is for me?

Can I be happy in the okay? Can I be content to just keep swimming and hold my head above water?

Is being just okay…okay?

Having an invisible chronic illness is like living your life permanently on the sidelines. You look fine, you act fine, you generally show up to normal life-in-your-30’s events, but thats’s all - you’re just kinda there. You have little to talk about, not much to contribute, no race to run - or at the very least, that's what it feels like.

It's like being benched at the game you have waited your whole life to play. 

For six long years I have swum upstream against the ever-changing current of the in-between, trying desperately to get around the river bend. 

(Note to self: just how DID Pocahontas do it?)

I have watched the world continue to turn around me, as I remain in one place, one foot stuck in the mud as everyone goes about their lives.

The doors shut, the cars drive away, the bus rumbles down the street, and then…nothing. The stark, slap you in the face, deafening silence.

Nothing screams louder than silence.

What if people knew that I both need and am petrified of silence? 

When it is silent, there is nothing to crowd out the blaring cacophony of my mind.

In August, Mr. RestartingMyHardDrive and I welcomed our first puppy. 

(Yes you read that right. The same puppy I have been working on for all ELEVEN years of our relationship…and they say New Englanders are the stubborn ones.)

Alfie is a ball of fluffy happiness, and the most loyal and constantly exuberant companion. He gets me out of the house and into the world, and is the very best little fur-child (even when he is chewing on the wall...and my shoes...and the file cabinet...). He is exhausting and wonderful and makes us laugh every day.

So…why do I still feel…behind?

Can I be both intensely grateful for the incredible gifts of my life, and at the same time…just okay?

(No but really, he will stop chewing someday...right?)

It feels so complicated to be simultaneously the person who shoves iPhone photos of her dog in peoples’ faces without them asking (sorrynotsorry) and the person who eats lunch alone everyday, reading a cooking magazine propped up on a cookbook stand to fill the empty void. 

Am I just one big paradox?

Motivated but distracted.

Restless but exhausted.

Together but alone.

Head in the stars, but feet stuck in the mud.

You can see now, semi-blank page, why I’ve stayed away.

I have so many questions, and so few answers. 

Maybe. 

Do you think my lack of answers, is the answer?

Is it that I just need to keep asking these questions, and swimming swimming swimming in search of more than “just okay?”

Aren't I far too much of a dreamer to believe that this is it, that I just stay here in the same spot and let everything pass me by?

And furthermore, don’t I get to choose?

Is this all a grand invitation from the universe to face down my demons and dig deeper and allow the next phase of my life to show up?

What if I put it out there into the universe that I'm ready for a change??

What would happen?

I know…I KNOW.

The relentless monkey chatter of my mind has extensive opinions on the matter.

But this choice is mine, and does not belong to those monkeys. I owe nothing to the monkeys. 

Aren't I wasting the gift of life if I believe and accept that “just okay” is it?

I am not willing to wave the white flag.

I am not willing to forever and ever be “just okay.”

I know...I think I've always known. It just feels awfully bare and vulnerable out there in the open.

It may be days and it may be years and it may take many more pumpkin-spice themed Octobers of deafening silence.

But when the time is right, I will be here on the sidelines. I will be ready. 

In the meantime, I guess I’ll keep swimming.

Still Looking for that Hidden Camera...

Have you ever had one of those moments where all you can do is wonder why no one is with you to see what you're seeing?

Ya know, the kind where you look left…look right…and expect to find out that my girl Ellen Degeneres is watching you on a hidden camera?

Representing the rare and unusual, I experience these moments A LOT.

For example, when the 94823084th doctor looks at you with a bewildered “I’ve never seen THAT before!” expecting you to be a) shocked and b) somewhat alarmed, and all you can think is “I wonder if I have time to grill my sweet potato for dinner tonight?”

Over the years I have shared nearly all of the “Billboard Top 25” ridiculous moments, but...I have a confession to make.

There is one moment…that may in fact be the very tippy-top of the list, that I didn’t share. 

One test from my good ol’ 2012 pilgrimage to Mayo, that I decided was just a wee bit too ridiculous to share.

(Except to my father, who laughed so hard in the waiting room, I felt the need to confirm the presence of his inhaler in his briefcase.)

I didn’t feel the need to share it, that is, until 4 years later, the test that I thought I would never ever ever ever have to think of again, was ordered by my doctor.

Let me assure you - I initially said no. 

In fact, I believe I laughed as if it was a joke.

But my new doctor promised it would be super helpful! and very diagnostic! and the start to better food consumption!

And let’s be honest, the promise of eating more than 10 things is like dangling a tennis ball in front of a retriever - absolutely impossible to ignore.

Now before we dive in further, I feel the need to provide a disclaimer.

People…I have extensive gastrointestinal dysmotility. In other words, my GI system is all kinds of dysfunctional from the very top to the very bottom. Over the years I have met with more doctors and had more GI tests than I can even begin to count, and as with most commonly repeated life events, what once seemed weird quickly becomes just another day.

I say this, because today I’m introducing you to the Anorectal Manometry…and that alone should give you a hint enough to know that if bathroom humor and being introduced to the inner workings of my colon is too much for you, allow me to suggest that you close the computer, grab a green juice and go for a stroll. No questions asked. 

….

As I was saying.

So, the anorectal manometry. So uncommon and unheard of, that Microsoft Word continues to insist that I am trying to spell something else.

As with most tests in the GI department, there is an element of preparation. This delightful little adventure involves not 1, but 2 enemas two hours prior to the test. 

Nothing says “good morning!” quite like a double enema at 4:45 AM, my friends. NOTHING. (Also notable, you can save a full dollar by purchasing the enema twin pack at Target!)

When you endure a GI test for the first time, you are blissfully unaware. You head back into the surgical suite completely in the dark of just how this whole transaction will occur.

The second time, however? You seriously question the sanity of the extremely chipper nurse who comes to retrieve you from the waiting room.

(The first time I had this test, my extremely attractive male nurse told me he would step outside while I dropped my pants. Oh how kind to step out of the room while I take off my yoga pants...and then come back into the room to very closely examine my bowel habits...)

After changing into a gown, and hearing the requisite “you’re too young to have a pacemaker!” and “but you look so healthy!” the show began when the nurse kindly instructed me to hold onto the bed so she could check my anatomy.

Friends, when one is instructed to brace with the bed, one should guess the check will involve more than “1 cheek, 2 cheek, hole, got it!”

All while telling me about her darling grandchild, a nurse wearing bright red lipstick checked my INTERNAL anatomy. So glad she made herself up for the occasion.

While desperately trying to distract myself from the situation DOWN THERE, I decide it’s a genius idea to take stock of the items on the prep tray.

This just in: TERRIBLE IDEA.

The items include, but are not limited to: 1 eighteen inch set of tubing in plastic wrap, 1 bag of balloons, and 1 extra large tube of KY Jelly.

[Braces bed with more fortitude]

Shortly thereafter, aforementioned 18 inch tube goes exactly where you are guessing it does. AND THEY LEAVE IT THERE.

At this point, my red lipstick friend switches spots with another poor soul who has been relegated to the world of the anorectal manometry….who proceeds to lead me in a long series of repetitions of “SQUEEZE 2 3 4 5!” and “PUSH 2 3 4 5!”

Guys. I’m doing calisthenics with my RECTUM.

At this point, I again dare to look around for distraction and notice that my red-lipstick pal has her shiny gold-cased phone out, all aimed in the direction of my extraordinarily bare bottom half. So I do the completely logical thing and assume that she is taking photos…until I realize she has the stopwatch feature up and is using her gold-clad telephone to time my rectal calisthenics. I’m not sure which is more jarring.

At this point, you’re probably thinking “Ok, it has to be almost over, this can’t possibly get worse!” and I will admit, I was right there with you the first time. 

Just when you are thinking they must be wrapping up and about to send me on my merry way, they instead whip out a giant syringe full of saline. Remember that balloon from my perusal of the prep tray? 

Yep. 

Before I can even begin to mentally prepare myself for the next phase of this life altering experience, 18 inches of tubing is removed, a balloon is attached to the bottom, and 18 inches is reinserted. Now I feel it’s important to note that I requested a funfetti balloon. If I am going to produce a balloon from the inner reaches of my colon, it had better say “Congratulations” and be full of confetti. I do not think this is too much to ask. 

I was denied.

Alas, the balloon was yellow. Lame. 

Once the decidedly non-confetti containing balloon is no longer on the outside of my body, the previously mentioned syringe of saline decides to join the colon party and they fill up the balloon. 

They fill up a balloon. Inside my intestine. And then attach a rubber tube to it. And tie on a weight.

True. Story. 

I am, at this point, instructed to head to the attached bathroom for a more “natural experience.” I am now completely naked, with a flimsy hospital gown half covering the front of my body and about 12 inches of rubber tubing and a weight hanging out of my backside, attempting to walk across the room to the bathroom.

Never. Looked. Better.

I am firmly instructed to drop said weight into the toilet, sit, and let them know when I’m “in position.”

After I nervously share that I am, in fact, in position, three words are yelled through the bathroom door:

“READY

SET 

GO!”

At this point, my main objective is push out the balloon. That is attached to a weighted tail. In my rectum.

It is absolutely crucial that I make sure you understand that this is a TIMED test. For a full two minutes, likely timed on the shiny gold phone, my two newest pals are directly outside of the bathroom door yelling “GO LYDIA!!!!,” “PUSH!!!!! PUSH!!!!!!” and “YOU CAN DO IT!!!!!!”

People. I had balloon-pooping cheerleaders. 

If only I brought pom-poms.

I am now sitting on a toilet at Hopkins, mostly naked, with a weighted tail hanging out of me, literally sweating and red in the face when I hear a dejected “times up” from outside the door.

Sooooo…

Not only did someone stick a yellow balloon into my rectum, but that yellow balloon is now STUCK in my rectum. And seeing as the yellow balloon is attached to a weighted tail that ends in the toilet, I am now also STUCK on the toilet. 

Ummm….sooooo….

Apparently my bestest red-lipstick-clad pal drew the short straw of opening the door, where she then directed me to lean forward while she “retrieved” the not at all congratulatory balloon. While untying (yes, untying) the balloon inside of my backside, I receive a muffled, “Well I guess you know you failed that part!”

Yea. 

Got it, thanks.

Several weeks later, when I had a follow-up appointment with my doctor (who, I may remind you, had promised me all things diagnostic! and helpful! and more food!) I was quite thrilled to head to the patient rooms, and NOT the surgical suite…but I sat with tightly crossed legs, just in case.

I listened as the doctor started reading off the different numbers and pressure readings and speed of my rectal calisthenics, waiting patiently for her to mention when I can go dive into some chips and salsa, and instead I hear;

“Well, what's interesting is we don’t really know what this means!”

Interesting. 
Is that so.

In other news, while filling out the payment portion of my not one, not two, but THREE day stool test (another part of the super helpful! diagnostic! more food! plan) I notice the cost of the test is about 6 times what I was told it would be. Thinking there must be a mistake, I call the diagnostic company to inquire about the cost of the three day "box o' my bowels" residing behind the spinach in my refrigerator. 

A very kind, Southern woman patiently explains to me that my insurance company decided not to cover the test...but if I’m unable to pay the full price at this time, I can place it on layaway!

Layaway. 

For my stool sample. 

Ellen? Are you there?!?

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. 

HA.

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."

"Oh...one moment please..."

[second awkward long pause]

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

Stupendous.

(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 dreamer...so 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.