Hatching Hatch

Greetings, friends!

Quick housekeeping note - by popular demand, you can now receive blog updates via email! Simply enter your email in the white box on the right side of the screen that says "Follow By Email" and voila, the blog posts will magically appear in your inbox.

It's magic, really! Right up there with unicorns and wizards.

Anyway, onto more important things - hatching.

Two Mays ago I ran my first half-marathon. My body was literally falling apart, but I didn't know or understand it yet. Somehow, by the power of my pride on the line and the knowledge that my mother was holding her breath for the entire 13.1 miles, I crossed the finish line.

Don't get me wrong, I was thrilled to have finished and my medal is still proudly hanging in my home. However, I really beat myself up mentally about how I did. At the time I had absolutely no concept of the chaos within and couldn't understand why it had been such a struggle (now I look back and haven't the foggiest clue how I finished at all). I immediately started plotting for my next race and thought about what I could change to perform better (read: make it look a little bit less like I was dying whilst running). I started looking at races right about the time that my body really and truly broke down and I was swept off into a whirlwind of hospitals, tests, traveling, learning and growing that has yet to stop.

Exactly a year later, I received an official letter congratulating me for qualifying for long-term disability. It rocked me to the core and took me several days and a lot of self reflection to accept the fact that a body could go from running 13.1 miles to being declared as legally disabled in a matter of 365 days. As a way of coping, I shared that I was going to set a new milestone in May of 2013. I didn't know what I would do - I thought I would walk a 5K or start painting again or write a big, special blog post.

Instead, I started a business.

Friends, I'd like to formally introduce you to the new love of my life: Hatch Health and Happiness!

My business is up and running - I already work with clients all over the United States and have a real-deal fancy business card to prove it!

The name Hatch was originally an acronym - Help Adapting To Changing Health- but it has morphed into the concept that we are never really starting from scratch. When you are diagnosed with an allergy or disease, discover a food sensitivity, become frustrated with your endless weight loss battle or throw your hands up and surrender to stress, it can feel like you have to completely start again to feel better. Change is scary, and even more so when you do it alone. I help my clients learn to hatch from within and make lifestyle and dietary changes to reclaim their health and happiness.

I've been in that dark and terrifying bottom of the barrel. It wasn't fun. Couldn't find a darn unicorn anywhere.

So I made a choice to make a change.

I chose to re-focus my life's purpose.
I chose to pay my journey forward.
I chose to go back to school and become a health coach.

And now, with first-day-of-school-jitters, I'm ready to share it all with you.

So, friends.

Deep breath

Without further ado, allow me to formally introduce you to my business:

www.hatchhealthhappiness.com

Hurry up and Wait

Hurry up and wait.

Anyone who has ever spent any time in a hospital, or really any medical setting at all, understands the concept of hurry up and wait.

You wait for appointments. And tests. And results. And then for the appointment with a new specialty area that occurs because of the results from the test that was ordered by the doctor for whom you waited months for an appointment in the first place.

Hurry, skedaddle, rush.
Wait.
Wait.
Wait.

In the medical world, you also wait for answers.

I'm still waiting.

Earlier this week I had a bilateral bone marrow biopsy. A procedure which involved 9 IV holes in my arms, 1 hole in my finger and 2 giant holes in my hip bones. Then I had an endoscopy, which involved 3 chunks removed from my esophagus and, frankly, a pretty sweet anesthesia induced nap.

In short, I look a bit like a road full of potholes.

Potholes which showed absolutely nothing.

I feel a bit like my disappointment can't be warranted. After all, I knew there was a high probability for negative test results.

But warranted or not, I was still hoping. Not even for a diagnosis, but at least for a clue. Something to lead me in the right direction. To reopen my proverbial case and reorient my compass.

Zilch.

Where's Dr. House when you need him?
[I'd be ok with waking up from anesthesia to Hugh Laurie. Just saying.]

So now I'm back to waiting. I'll wait the necessary off-medicine 10 weeks before I have my blood drawn again to see if it will show anything fabulous and exciting. And I'll go through the grand dog and pony show of acquiring dry ice again for said blood extraction. And then, just for a change of pace, I'll wait.

It's funny how the moments you want to get here seem to take waiting to a new level, and the moments you want nothing to do with seem to appear out of thin air.

This morning I woke up and realized it was May 16th. Two days past May 14th.

Um, just how much anesthesia did they give her this week??

May 14th, 2013 seemed like a day that was SO far away when it was first mentioned to me as a deadline. It was a deadline that I never thought I would need to know, because never in my wildest dreams did I think it would apply to me.

May 14th, 2013 is the day that I lost my position at my beloved elementary school.

When I first transitioned into long term disability, I never thought I would stay on it through the deadline. It was supposed to be temporary, just a time to rest and heal. I never thought that I wouldn't return to my home and school family of 7 years. It never even crossed my mind.

I never thought there would be a day when someone would ask me what I do and I would have to pause...because I'm not entirely sure of the answer.

I have to believe that my body is guiding me on a journey that will ultimately lead to new discoveries - both for myself and others in my field of medical mysteries. I have to believe that my decision to go back to school and pursue the field of holistic health was my opportunity to make a change in the midst of chaos and use my experience to help others follow their own path.

As tough as these past few weeks have been, both physically and mentally, I have to believe that this journey is leading me somewhere, as long as I have the patience and perseverance enough to follow.

So I'm going to hurry up and help my body heal the potholes.
I'm going to pack up my bags and head home to hug my husband, my bed and my juicer.
And then with open ears and a battle-worn heart, I will wait.

Consistency

Ya know friends, if nothing else, at least I'm consistent.

I fly to Minnesota for a few appointments, and end up with several. 

I book a return flight, and I move it. Sometimes two times. Or five.

This trip has proven to be no different.

I arrived in Minnesota on Tuesday and technically speaking, should have flown home yesterday.

Shocker, I'm still here.

(I know, I know...didn't see that one coming, did you??)

After a three hour appointment with my immunologist on Wednesday, it has now been officially stated that Mayo has never seen anyone quite like me, they have no idea of a cause and my diagnosis is now recorded as a "complex and obscure multi-system illness."

Personally I think "hot mess" has a better ring to it, but what do I know?

As my doctor stated, "we are in unchartered waters."

I think he expected me to be shocked by this. 

Instead, I laughed.

Let's be honest - I have known I've been in unchartered waters for quite awhile, I just needed everyone else to get on board.

The medical nerd part of me is more than a little fascinated by the fact that I may be in possession of a disease or viral response that has yet to be discovered.

The practical side, on the other hand, is a wee bit unsettled. Details.

It should, however, be noted that I am extraordinarily lucky to have the most brilliant doctor ever to roam the earth. I can practically feel my IQ rising every time I meet with him. 

And most importantly when I asked him if he would vote for me for mayor of Rochester, he promised to give me serious consideration.

Smart man. Clearly.

At this point, we are at a bit of a crossroads. I have clearly defined and increasing symptoms in several systems of my body. I have exhausted countless pharmacological and holistic treatment options. I could write a Fodor's guide to medical testing. And I'm in unchartered waters.

Good thing I like to swim. 

I'll start next week with a bone marrow biopsy in not one, but both of my hips (ya know, just to really double the fun). Turns out mast cells are finicky little fellows that often flee with great haste at the sight of a giant hollow needle (for the record, can't say that I really blame them?) so the test is done on both sides in order to increase your chances of finding the results you need. And even if I get a negative result after completing the test bilaterally, we still can't completely rule out a mastocytosis diagnosis, because my little mast cell friends are just THAT picky.

So to give us a little bit more information, sometime next week I'll also have another upper GI endoscopy. You would think with the number of neck organs I have lost in the last few years that I would have a recent endoscopy on file, but it has actually been over 2 years since a camera was jammed down my throat purely to examine my esophagus and stomach. Plus it turns out that eosinophils, a type of white blood cell, can sometimes be drawn out when you have too many mast cells, and can cause difficulty swallowing. So there's that.

I was supposed to have some other testing to use as a second option for route of treatment. It was supposed to be a very easy and clear-cut decision on whether or not to proceed with the bone marrow exam and endoscopy or head in an entirely new direction. I completed some simple blood work on Wednesday and when the results came back astoundingly out of the normal range, there was a brief 48 hour period where it looked like after 3 years of this journey, I might finally have results. Or at the very least, I might finally have known the direction that we are headed.

But, at the end of the day, we are all human, and it turns out those results were not actually indicative of any clinical findings in the slightest. 

Somehow my doctor, the administrative assistant and the laboratory all missed that I take a medicine for reflux. This medicine completely skews the test results and renders all of them inconclusive.

Ready for the kicker?

You have to be off of the medicine for 8-10 weeks prior to re-testing.

Minnesota road trip in August anyone?

There is a strong likelihood that both the bone marrow biopsy and endoscopy will come back with negative results. The invariable nature of both tests, combined with my all star achievement career in false negatives yields a very high chance that I will get holes drilled in my hips and a tube jammed down my throat, just for kicks. 

But at the least, I will leave knowing that I turned every stone possible and maybe even narrowed the playing field ever so slightly. And, let's be honest, what would the world do if I suddenly stopped coming to the Mayo Clinic?

Allow me to quote my buddy at Carroll's Cup Frozen Yogurt:

"Where have you been? Don't you live in Rochester?"

Consistency my friends. I am nothing if not consistent.