Expanding my resume...Part 2

In yesterday's post I promised stories of fame and fishermen.

I delivered on the fishermen, but not the fame.

As many of you know, every three weeks I drive up to Philadelphia for speech and vocal therapy, as well as for various appointments that typically involve needles in my neck, tubes down my nose and various instruments of the recording nature shoved down my throat to capture my bobo larynx in all of its glory.

In short, it's a party. Ole.

Now despite the fact that I could recite every rest stop and construction zone between Washington DC and Philadelphia, and despite the fact that gas is not exactly cheap these days...these trips aren't all that bad.

You see, I grew up in Philadelphia. It was my first home and my first city love. So despite my rapidly increasing BFF status with I-95, I get to spend time with my parents and two of my best friends, at least once a month. Not too shabby.

It also helps that I have a new love.

[Don't worry, Mr. RestartingMyHardDrive is well aware. He even approves!]

The name is Sweet Freedom Bakery.

Or just Sweet Freedom, ya know, if you are real close.

And friends, let me just tell you. This love is real. I am smitten.

Everything (yes, everything) in the bakery is delicious...oh, and also kosher, vegan, and gluten, wheat, soy, dairy, corn, peanut, egg, casein, and refined sugar free.

Ladies and gentlemen, I can walk into this bakery and choose a treat from 95% of the options.

NINETY-FIVE PERCENT!

Just in case you are a newcomer to this blog (in which case, welcome!) it has been YEARS since I have been able to go anywhere and choose from 95% of the options. At a typical restaurant I am usually looking at 0-3% of the options being Lydia-friendly.

Frankly, I'm not even sure 95% of my own kitchen is Lydia-friendly? Hmm.

Sweet Freedom was started by a woman who graduated from the same school where I am currently a student (Institute for Integrative Nutrition) and is conveniently (dangerously??) only a few blocks from the hospital. After I finish my appointments for the day, I meet my friends at SFB and we enjoy a treat...or two...or ten?

(Ok fine, maybe not ten. My stomach is paralyzed after all.)

In short, I get to enjoy time with my friends, while eating a tasty treat and forgetting about whatever nonsense occurred at the hospital that day.

See why I'm in love?

During one of my trips a month or so ago, I noticed a stack of papers with a blank cupcake and a pile of markers. Now, let me be clear. It is basically a law of physics that I cannot sit next to a pile of markers and not use them. I mean, I'm fairly certain it would be a crime against humanity. Or something.

The papers were there for Sweet Freedom's "Create Your Own Cupcake" contest. The idea was to design a new cupcake that they would feature at the bakery if you won. So of course I entered. Again, I really had no choice.

Obviously I went with s'mores. Come on people, I've been a camp girl since 1994.

After I finished my cupcake design (with much discussion and reflection from my cookie-eating partners in crime), my entry was added to the wall with the others. There was some serious competition - black raspberry chip...mint chocolate chip...black forest!? The wall was rich with delicious possibility. My friends and I went along our merry way and I resisted the urge to take out an ad in the Inquirer asking people to go vote for my cupcake before I headed back to Virginia.

Ok fine. I "strongly encouraged" my parents to go vote. But I mean, they're my parents! They are contractually obligated to covet my magic marker creations...right??

Weeks went by.

I didn't sleep.

I didn't eat. 

I no longer had hair or fingernails.

I had just about given up hope when my phone rang.

(I know, I know! You can't handle the suspense! Move over R.L. Stine, this is better than Goosebumps!)

Drumroll please...

My cupcake had received the most votes and would be created into an actual cupcake!

There it is! The real thing

It was a big day. I added a colorful scarf to my yoga pants
and T-shirt uniform. Ya know, just in case the paparazzi
showed up.

So moral of the story is that I'm pretty much a celebrity now. I mean, I'm surprised you haven't seen me on the cover of Time magazine yet, I'm sure it's just a matter of time. At this rate, I'll be a shoe-in for next year's "100 Most Influential People." I'm already a celebrity in Minnesota, why not Pennsylvania too? 

Besides, nothing says influential like a s'mores cupcake...am I right?

*If you haven't already headed straight to my buddy Google, let me introduce you to my new love: www.sweetfreedombakery.com

Expanding my resume

Friends! I have captivating tales of fame and fortune and fishermen!

Wait. Scratch that.

No fortune, just fame and fishermen.

Fishermen??

A few weeks ago, I received a summons to return to my pride land of Minnesota. I mean, my gut says they just missed me...but maybe the fact that my troublemaker mast cells have been even more out of control lately had something to do with it as well. Details.

In an effort to not spend the entire month of May in Minnesota, my allergist kindly offered to send me some lab work to do at home and ship back, so the results were all ready to go when I arrived. How thoughtful! Sounds easy enough, right?

False. Wrong. Negative. Ixnay.

When setting up the lab testing, I mentioned to the technician that I was going to be heading up to Philadelphia for appointments later in the week and wanted to make sure it was ok to complete the testing when I got home to Virginia again. I was assured this would not be a problem and we went along our merry way of discussing the glorious details of blood work and a 24 hour urine collection (he was impressed with my knowledge. Puhlease. Like this is the first time?). Everything was set up and the box would be shipped with everything I needed to complete the testing and send it back.

Fast forward a few days when I arrive home from the barn to find a giant brown box from the Mayo Clinic.

*Sidenote: You know that moment when you turn the corner towards home and you see a giant package waiting on your doorstep? Your heart rate increases, you start smiling and you can hardly wait to see the surprise that has landed on your door? Ya know, you leap out of the car, rush to the door in anticipation....aaaaaand then discover it is a giant box of test tubes and a pee jug and NOT a prize box informing you that you have won a pony? Yea. Been there.

Upon opening the box, I discover a note that says, "Start testing immediately after receiving this package, do not wait until next week."

Stupendous.

I'd like to tell you that this was the first time that I have driven up I-95 with a giant jug of my urine.

It's not.

I'd also like to tell you that this was the first time I've brought said jug into the Delaware rest stop with me, rinsed the attached cup at the rest stop sink and then carried my satchel o'urine with me to the Starbucks to get a soy steamer.

It's not.

So because I had previously added my urine collecting skills to my resume, I wasn't that phased by lugging it around and I knew the exact protocol for shipping it back to my fan club in Minnesota.

I had not, however, ever had to ship them my blood.

In the aforementioned giant brown box, there was a smaller brown box, that contained a smaller styrofoam box that contained a still smaller styrofoam box full of test tubes and vials. Inside this Rubix cube of boxes were instructions for the phlebotomist (person poking my arm with needles) that explained how to collect the blood, where to put it and how to ship it.

If you haven't picked up on the pattern yet, I'll help you out: if something seems really simple, that is actually hospital code for extraordinarily complicated.

You see, you can't just call up any lab in the Philadelphia area and make an appointment. Nor can you assume that they will have the necessary materials to complete the task. The lab has to a) work with your insurance, b) be willing to work with the Mayo Clinic and c) have dry ice to ship the materials.

Allow me to share a conversation with the Mayo Clinic Specimen Office:

L- "Hi, I'm having a rather difficult time finding a lab to complete this testing and in addition, none of them seem to have access to dry ice. Do you have any ideas?"

MC - "Oh dear, let's help you out with that! If you go to a hospital, you will have more luck. Outside labs will generally turn you away, but a hospital has to accept you."

L - "Well I tried the hospital where I will be tomorrow, but they don't have dry ice, where can I find that?"

MC- "Well, where are you located?"

L - "Philadelphia."

MC - "Perfect! Isn't that on the water? Just go down to the waterfront and find a fisherman. They always have lots of dry ice for the lobster."

[awkward silence]

L - "Um...Philadelphia is on a river...we don't have too many lobsters?"

MC- "Oh they might for the fish though!"

[awkward silence]

L - "Okay...let's just assume for a second that I am unable to stand on the wharf with my styrofoam box of blood and locate a fisherman with dry ice...what is my back-up plan?"

Ladies and gentlemen, allow me to introduce www.dryicedirectory.com

Didn't know it existed? Neither did I, but that little gift of a website tells you all of the locations in your area for dry ice...er...more accurately, THE location. In the city of Philadelphia, there is one.

After realizing that I have to be at the lab at 7, the dry ice place opens at 9 and my next appointment at the hospital is at 9:30, it is determined that my poor father will be roped into coming with me on this grand excursion, so he can run and fill the box with dry ice as soon as they open.

Again, seems easy...or at least, do-able, enough. Wrong.

We arrived at the lab around 7, I was rejected by the first phlebotomist around 7:45, spoke with the supervisor around 8:15, who called the grand guru of the lab to look into centrifuge and freezing protocol before calling me back at 8:45 and instructing phlebotomist #2 to take my blood at 9:20, who felt it necessary to comment on the diminutive size of my veins before sending me on my merry, sprinting way, to get to my appointment at 9:30. Meanwhile, Papa Haas has gone on a trip to South Philly with an empty box in tow, hoping to get it back to the lab before said centrifuging vials of blood are returned to the lab and I can pick it all up after my appointments.

Ok, hands in on Operation Dry Ice and we made it. Go team.

But, I still had to send it.

Now my buddies in the Specimen Office had sent me a pre-filled out form for Fed Ex and instructed me to drop the box off at a Fed Ex store or schedule a pick-up. Conveniently, there is a Fed Ex directly across from the hospital, hooray!

Hospital code again? Right.

Did you know that satellite Fed Ex offices will not accept live specimens? Especially if said live specimens contain dry ice, which involves several biohazard stickers and weight notation. True story. Nope, those extra special packages have to be sent from the Fed Ex warehouse. Ya know, the warehouse which is all the way across town, next to the recycling plant, in an area of town that a skinny white girl in a Honda, lugging around a box of pee and blood probably shouldn't frequent solo. See where this is going? Yep, at the ripe old age of 30, I needed my father to drive me, and my live specimens, to the warehouse where they could finally be shipped overnight to Minnesota.

A ridiculously large box for a 1/3 cup container of urine and 2 vials of blood.

So, let's review the expansion of my resume:

1. Need dry ice? I can find it. Or I'll find you a fisherman. I just ask that you get my mom a piece of salmon while you are at it.

2. Need to do a urine test while traveling? No problem, I can talk you through it, let you know which rest stops on I-95 have large stalls and I even have a perfectly sized tote bag you can borrow.

3. Need to send a live specimen? I can provide directions and even recommend an excellent bodyguard.

4. I am also now officially bilingual. I speak English and Hospital Code.

Oh and as for the fame? 

We'll save that for tomorrow.

The Season of 30

I don't believe in the concept of a clean slate.

I don't believe that we ever really start from scratch.

I believe that no matter where we go, we carry our past with us. Our life experiences shape how we face each new day and the obstacles that lie ahead.

A few weeks ago, I reached a new personal milestone. I turned 30.

Thirty years old - an age many of my friends are approaching with much trepidation.

Me?

I couldn't be more thrilled.

A new decade!
An even number!
A number that involves no rounding to the nearest ten!

[Elementary school teacher simple pleasures?]

Most importantly, a new season.

When I first started teaching, I was thrilled to learn how much of the elementary school curriculum is about seasons. Nerd that I am, I took bizarre delight in any and all opportunities to draw a detailed rendition of the life cycle of a butterfly or act out the four weather seasons with a squadron of 5 year olds. My go-to classroom music was Vivaldi's infamous "Four Seasons" and despite a still-standing pact with grad school friends to never fall victim to "the seasonal sweater," I take great delight in the decorations that don't actually touch my body.

To me, there is something so refreshing and inspirational about a new season. In spite of whatever has taken place in the prior season, the cycle continues. It's unstoppable. A really harsh winter may result in fewer flowers in spring...but eventually, spring always gets here and is followed by summer, then autumn and then back to winter again.

[Puxatony Phil, that was my not-so-subtle hint to FINALLY deliver the Spring that you promised. Seriously groundhog, get on with it.]

So here I am. The season of 30.

In college, my housemates and I were mildly obsessed with "13 going on 30." I mean, hello - Jennifer Garner, Matt Ruffalo and a steady stream of Razzles? What's not to like?? For Valentine's Day, I made all of the girls little heart-shaped jars of red and silver glitter with a tag that said "Thirty, Flirty and Thriving," just like the magic glitter in the movie. That day seemed so far away at the time.

If you had asked me five years ago what 30 would look like, I'm not going to lie and tell you that my life now is what I pictured. It's not even close. But I still don't think I missed the magic glitter.

Tomorrow I have an appointment with my gastroenterologist. It goes without saying, that I typically dread these appointments. I am obviously well past the awkwardness of the first couple of moments in the GI wing, but I still don't generally list sitting down for a chat about nausea, my time in the bathroom or inappropriate placement of air as a social activity.  For GI-newbies, let me just set you straight: these people talk about poop and gas all day. ALL. DAY. So just buck up and let it out.

[horrible pun maybe a little bit intended...]

In terms of symptoms, I should really stick with my typical appointment dread. The past few months have been among my worst in pain and severity of symptoms. But still, no dread. In this new season of my life, I know what my body is capable of and I know how to handle it. I'm not going into this appointment fearing some new, crazy procedure or crossing my fingers to join a clinical trial of a drug that will grow me a third arm. I'm going to this appointment to check in and reassure my doctor that I'm still in one piece. Despite my recent track record, my husband and I just returned from our first non-medical trip since our honeymoon...and I did just fine. Yes, I came home a bit nutrient deficient and yes I lost 5 pounds in 6 days... and yes, I got away for a week with my husband and loved it.

[However, Puxatony Phil, we could have done without the 40 degree temperatures in Florida. Get cracking groundhog.]

Tomorrow I will go to my appointment. I will share my symptoms and stats when asked. I will get various body parts poked and prodded and we will likely spend an unusually long amount of time examining the gaping hole in my stomach.

But then I'll share that I'm halfway through school to become a holistic health coach and help patients just like me. I'll share that I'm learning to sing again. I'll share that I just went on vacation with my husband, and didn't step foot in a hospital.

In this new season, I will share that I am thirty. And flirty. And thriving.

Same song...seven hundredth verse?

Thomas Edison said, "I have not failed. I've just found 10,000 ways that won't work."

Let me assure you friends, that despite the fact that this was said nearly 100 years ago, it was said entirely in reference to the life and times of yours truly.

Lightbulb, Schmightbulb.

You see, I've developed a pattern.

Step 1: Receive diagnosis for something bizarre and unusual with no known cause
Step 2: Spend copious amounts of time researching said rare malady
Step 3: Discuss treatment options
Step 4: Discover new allergy from seemingly innocuous treatment options
Step 5: Adjust to new normal with non-functioning [insert organ name here]
Step 6: Pour heart out on blog sharing new level of deep acceptance
Step 7: Repeat Step 1

I am nothing if not consistent.

Last week I headed up to Philadelphia for a few days of medical testing bliss and wonderment. It had been 6 whole weeks since I had traveled for a medical excursion, so it was high time that I pack my bags and skedaddle out the door.

I started the day with an esophageal manometry. If you have never had the incredible privilege of experiencing this tubular delight, it involves a tube snaking its way from your nose all the way into your upper small intestine. And just so you get to enjoy every minute, you are completely awake and not at all sedated. In a nutshell, the manometry measures how well your esophagus works. I have actually had this gem of a test before, in 2011, so I knew exactly what to expect...the wonderful doctor* who administered the test agreed with my analysis that ignorance is, in fact, bliss.

*I'd like to give a major shout out to the doctor who administered the manometry. She shared that she recently asked a friend to give her the test so she knew exactly what it felt like. Let me be clear friends, this does NOT happen often and is absolutely to be commended.

After 15-20 minutes of getting up close and personal with my gag reflex, I was sent on my merry way and headed to the rehabilitation section of Jefferson Hospital's ENT (ear, nose and throat) department. There I met with a Speech Language Pathologist who focuses solely on the singing voice. You may recall from this post that singing has shaped a giant portion of my life so far, and I miss it tremendously. At this point, I have had several doctors tell me that I will never sing again...so to be honest, I was somewhat dreading having to hear that news all over again. Luckily, I didn't have to! The voice therapist is incredible and after reviewing my films, listening to me croak in rhythm with her piano and analyzing every small detail of my breathing pattern, she placed me in the "not impossible" category.

You see, your vocal chords have the ability to lengthen and shorten, as well as open and close. Mine lengthen and shorten, but don't close.

At all.

Ever.

Hence part of the reason that speaking is exhausting and singing is not even an option - I absolutely never have enough air to do so.

Now, I'm not a doctor, but I do glean that oxygen is somewhat important for basic life skills.

Placing myself in the "not impossible" category may not seem like much, but to me it is a giant breath (ha...get it...!) of hope. I have a whole heck of a lot of hard work in front of me, but all is not definitively lost and the sense of relief is palpable.

I have written before about my quest to limit how I label things as good, bad or indifferent. As humans, we like to compartmentalize everything and I find it exhausting. In the medical world, one second something is great and the next it is dreadful. If you wait five minutes, it might get upgraded to passable, or it might get much worse. It is a constant piggy-back ride on a super-exuberant Tigger.

However, it is one thing to talk about how I will limit my labeling...it is another thing to actually do it.

I learned my lesson on Friday, when I walked into my next appointment, riding on the euphoria of my voice therapy, only to find out that the steroid injections into my larynx haven't helped at all so far and my esophagus is also now partially paralyzed.

Ya know, just for kicks.

It goes without saying that the "why" question is, as usual, impossible to answer. Come on people, I stick with a pattern. Just refer to step 1.

So now I go back to my routine.

I'll continuing following steps 1-7.
I'll figure out what to do with my darling esophagus...
and, let's be honest, I'll likely also figure out what not to do.
And all the while, the world will continue to noodle the grand mystery that is my body.

But friends, let me just be clear. I'm trusting Edison on this one.

No matter whether it is 10,000 tries or 1,000,000.

One of these days?

The lightbulb is finally going to go on.

I am enough

A year ago, at the start of year two of this journey, I wrote about being grateful. I meant every word and still do. I have been grounded and humbled. The relentless support from my family and friends, and people I have never even met, still takes my breath away. My eyes have been opened to possibilities in myself and the world around me that I never even imagined. It has been difficult and it is an ever evolving uphill journey, but I am still grateful beyond words.

But now, on the dawn of year three, I'm learning to stretch myself to be both grateful and accepting. 

I've written about acceptance before - many times. But I'm starting to think that true acceptance is a concept that grows and changes right along with us. 

I've purposely never read any books on life with chronic illness, as I made the choice to learn and reflect on my own. However, I can imagine that much of the literature has to do with fighting and acceptance. When you are first diagnosed (or in my case, desperately trying to get diagnosed), your automatic reaction is to fight, and as well it should be. You spend hours in front of the computer, find the best doctors and travel all over the country to get third and fourth opinions. You are relentless in your quest to reverse what has happened and return to life as you left it. You go flying into the battlefield, swords flashing and fires blazing, and you fight. Good gracious, you fight like you have never fought before. Many days the fight seems futile, but you garner every ounce of strength left inside and you persevere.

But at some point, without even realizing it, the battlefields disappear. At some point, the paths become well-worn and your armor is dangling, useless off of your side. At some point, you look around and notice that you are standing alone, with a dilapidated sword at your side.

And that moment, my friends, is where the real healing begins. 

You see, acceptance is not laying down your sword in shame. You have not been defeated. Acceptance is putting that sword to the side and walking forward with your head held high.

My sword is always close by, but I don't need it now. 

I am enough.

Two years later, I know that I will make progress and then I will relapse. Many times. But now I know that I will learn something each time. I will learn what my body needs and how best to let it heal. Our bodies will always tell us what they need, but we have to be willing and mindful enough to listen. A few weeks ago, I wrote about a relapse so swift and so powerful, that it knocked the wind out of both my body and my spirit. From that I learned that it's ok to feel defeated and ask for help. It doesn't make me weak or unworthy to lean on my friends and family for support. 

I am enough.

I now go entire weeks without a visit to any sort of doctor - a concept which would have seemed preposterous if you had asked me a year ago. Especially preposterous seeing as medically speaking, not much has changed. You see, I've noticed that life with chronic illness is a lot like teaching. The first year is absolute mayhem and pure exhaustion. You spend the entire year in survival mode and collapse in a heap on a regular basis. The second year is still crazy and chaotic, but your feet are starting to find the ground. Then there is that glorious third year. The year where you finally feel like you may actually know what you are talking about. There will always be surprises and every day is still an adventure, but for the most part you can start to breathe.

So now, as I embark upon year three, my sword is close by, but I know I don't need it. There will be progress. There will be relapses. There will be days where I am frustrated and days where I feel strong. There will be days when I need support and days when I can stand on my own, and that's ok.

I have fought a good fight. 

I have laid down my sword.

I am enough.

Beyond the Yellow Tape

Recently, a friend emailed and playfully chastised me for not updating my blog lately. "How am I supposed to know what you are up to?" she kiddingly asked. I laughed and we scheduled a coffee (aka soy milk) date, but it all struck me as odd. The blog posts have always flowed naturally - both when to write and the content to discuss, so it has never been something I have really "scheduled" in the past. I have learned through this journey that writing, for me, is cathartic. It is a way for me to sort out my emotions and plans, as well as a means of connection and communication with my family and friends. So the fact that I hadn't been writing, and hadn't even noticed, was a little odd.

It dawned on me later that I had been subconsciously avoiding this blog. I had been shying away because I didn't have anything positive or exciting to share, and that made me feel like a fraud.  When I started this blog, I committed to sharing my journey. All of my journey. Which means it would be hypocritical if I didn't share my struggles along with my triumphs. You see, 99% of the time I am able to approach life in a positive and confident manner, knowing that I can take a deep breath and handle whatever comes my way. I laugh and I joke and I take comfort just knowing that this is how I cope. It's who I am and who I've always been. I find being miserable...well...miserable and I want nothing to do with it. 

But that doesn't mean that there aren't any exceptions. It doesn't mean that I can forge ahead of every struggle without a little time in the 1%. Even as I'm writing this, I'm battling with the feeling of being ashamed of this moment, so this blog post tonight is also my attempt to overcome that feeling and let myself be human. 

Truth be told, I'm tired. 

Like I stand at the bottom of the stairs and question whether or not I have the strength to walk up kind of tired. 

And frankly? 

I'm tired of being tired. 

This entire journey has been about slooooow progress. And while I recognize that adopting my inner sloth is what my body needs, it isn't always easy to accept, especially the constant back and forth. Ya know, the dance where I take 8 (ridiculously slow) steps forward, followed by 7 (terrifyingly speedy) steps back. I know too much about my body to ever erase all of my progress and go back to the complete beginning, but sometimes it seems pretty darn close. 

Before I left for Mayo in December, I was, all things considered, as healthy as I had been in nearly two years. I was eating more, doing more and feeling like things were really moving forward. Then I traveled, for medical excursions and holiday celebrations, for 6 weeks. From Virginia to Minnesota to Massachusetts to Pennsylvania to Virginia to Pennsylvania to Minnesota to Pennsylvania to Virginia to Pennsylvania to Virginia. 

Right.

So it was no shock to me when I finally got home and collapsed in a heap. I slept for an insanely long time. Over and over again. I rested and juiced and took my plant-based vitamins and did everything I could to let my body heal. I had absolutely no interest in doing anything at all...which for a rather gregarious person, is usually the tell-tale sign that I need to rest. So I did.

But now I'm ready to be recovered. And I'm not. In fact, I think I may be the only person in America who dropped five pounds over the holidays and can't get it back on.

It's not like I haven't been here before. I have. Many times. I know the signs - I lose weight, my hair falls out, my nails break, my muscles weaken, I'm exhausted, I feel full after 2 bites of anything, yadda yadda yadda. 

I know the signs of a major relapse. 

But it doesn't make it any easier to accept.

I know I'll be ok. I'll continue to do everything in my power to get my body healthy. I'll juice and I'll exercise and I'll rest and sloooowwly, I will regain the progress that was lost.

I know that someday soon I'll go bounding up the stairs again.

But for now, for right this moment, I'm just going to be tired. And that's ok.

Keeping them guessing

Friends, I'm home!

More specifically, I'm home on the date that was planned upon when booking this most recent trip to Minnesota...AND I don't have a specific return trip nailed down. I also came home to clean sheets and towels, a freshly stocked refrigerator and a dozen roses. Shoe-in for best husband ever!

Bring it on, 2013.

In other news, I'm still waiting for the unveiling of my Mayo-versary plaque at the clinic. There was a small crisis shortly before I departed and the frozen yogurt machines weren't working. I'm guessing the clinic was understandably completely involved in this untimely malfunctioning of parts and inadvertently missed a major holiday. Tragic indeed, but understandable.

In any event, as per usual I spent the week being poked and prodded, along with enduring the usual assortment of questioning glances and uttering of confused statements. For convenience sake, let's start at the top of my body and work our way down...which leads me to my brain.

I've been telling my husband this for years, but my brain has now been medically documented as being absolutely gorgeous. In fact, my doctor printed off an image of my brain with the caption "Lydia's Beautiful Brain" and instructed me to place said masterpiece on my fridge. It goes without saying that this task was accomplished before I even removed my coat...I'm such a good student.

You may recall from a few months ago that there was some major speculation of a brain tumor and/or stroke, so while many of my symptoms remain unexplained (my specialty), it is a huge relief to have my pristine brain documented on 8.5 x 11 paper.

Moving down a bit to my eyes, my MRI did reveal that I have thickening of the tissue around my eyes, which is called Graves Ophthalmopathy. In case there was any confusion, this is a by-product of dear Graves Disease and it goes without saying that it usually affects fewer than 5% of patients. Ya know, me and Barbara Bush.

Obviously.

Left untreated, the tissue continues to thicken, further limiting blood flow/drainage to the eye area and eventually the eyes literally bulge out of their sockets. Friends, let me save you some trauma by strongly recommending that you do NOT Google Image this situation. Holy. Cannoli.

I am in the fortunate/unfortunate position of landing myself right smack in the middle of treatment options. Despite the chronic pain around my eyes, constant blurred vision and heavy eyelids, my eyesight is technically still fabulous (three cheers for my massive consumption of sweet potatoes). Seeing as my eyes are currently not bulging out of my head, I just get to sit back and wait. Since glasses cannot correct this issue, I just have to be careful about making smart choices when my vision is compromised...so for example, I probably shouldn't use those times to run the blender or chop anything...noted. I am told that in all likelihood I will eventually have to have surgery to correct this situation, ya know, once one or more of my eyes begin to bulge out of my head and my vision is more acutely compromised.

Yes. You read that correctly.

I'm supposed to sit back and wait until my eyes bulge out of my head and I see two of everything.

Moving on, now that we have addressed my gorgeous brain and semi-firmly-planted eyeballs, we can move forward to my rock-star immune system. Let me just tell you that my allergist at Mayo is absolutely, mind-bogglingly brilliant. He has never spent less than an hour with me, and every time I meet with him, I leave feeling like I just took a master's course in immunology. He literally leaves no stone unturned and thinks nothing of sending me home with microscope slides to conduct a few casual experiments at home and email him the results. This visit also involved him scrolling through the pictures on my phone and emailing some to himself for further study/enjoyment (5 images of my hives, 1 of a bright red cardinal from my parents' backyard). If it is not already strikingly clear, this man does NOT like when something is out of his grasp and not yet understandable. Enter: Me.

We are still waiting for some pending lab work (also known as the several day urine sample that I lugged with me through 4 states and a rest stop off of I-95), but at this point, the results don't really matter too much. It is clear that my mast cells are a hot mess and it is also clear that they would like the root cause of their distress to remain a mystery. Technically, this is termed as Inappropriate Mast Cell Activation Syndrome...which personally I think sounds like my mast cells were poorly behaved and got written up for detention. My doctor is nearly sure that I have TMEP (telangiectasia macularis eruptiva perstans) which is an extremely rare (duh) form of mastocytosis. The absolute only way to confirm TMEP is through an analysis of my bone marrow and my doctor has mercifully opted me out of this testing.

As I've said before, names and firm diagnoses really don't matter much to me anymore. Like anyone undergoing a health crisis, I spent a long time on a quest for a name, a reason...anything, but I moved on from the name-game a long time ago. What matters now is doing absolutely anything in my power to be as healthy as possible and let my body heal as best as it can. Sometimes that ability to heal means taking a leap of faith, going with your gut and opting your body out of a painful procedure and terrifying drugs.

So I'm doing what I do best - I'm keeping them guessing. I'm examining my arms through microscope slides and spending an awkward amount of time staring at my eyes in a mirror. I'm hugging my flower-giving husband and the pillow that I haven't seen in a month. I'm laughing at the unpredictability of life and learning from the ride.

Bring it on 2013, let's do this.