Vote for me! Pretty please?

Greetings friends!

Recently I entered a scholarship contest at my home-away-from-home, The Mayo Clinic in Rochester, Freeze-Your-Buns-Off Minnesota. Mayo is hosting a Social Media Week in October where patient advocates have the opportunity to collaborate with doctors, administrators and other health professionals on using social media tools and making healthcare more patient-centered. Double win!

As both a patient and a health coach, this is certainly a golden opportunity and I would be thrilled to participate! There is only one catch...I need to win!

SO friends...[prepare for the shameless plug], if you feel that I would be a good candidate for this scholarship and agree that I have a strong commitment to enhancing patient healthcare, please vote!

(and if you don't, maybe call me so I can bribe you with cookies convince you otherwise?)

**Please note, there are TWO ways to vote, so please read carefully!**

No really, please read VERY carefully. 

Smooches?

1. Follow this link to my entry: 

http://network.socialmedia.mayoclinic.org/discussion/lydia-buschenfeldt-patientcaregiver-scholarship-2013

2. After you read my essay, if you like it, you will be prompted to register for an account at the bottom of the page. FEAR NOT - this is simply so they know how to count the votes as it prevents one person from voting 234029384082 times. You will NOT have an inbox filled with junk mail!

(But I would love the person who voted 234029384082 times. Just sayin')

3. After you have registered for an account, you will be able to vote! There are three ways to do this...a) leave a positive comment that briefly explains why I would be a good candidate in the comment box below the essay, b) "like" the essay by clicking the like button underneath the essay and c) BOTH!

Please note, "liking" this essay on Facebook, or even with the Facebook "like" tab that comes up on the upper right-hand screen does not count as a vote!

The icing on the cake? Voting will continue through August 9th, so you even have time to tell your friends all over the world! Score!

I would really love to go and can't do so without your support...so please vote! And tell your pals!

Cheers to health and happiness, my friends!

A Belated Cheers

Long lost friends! Remember when I wrote a heartfelt introduction to my new business, released my website to the blogosphere, and then disappeared off the face of the earth?

Yea, sorry about that.

Truth be told, it has been an interesting couple of weeks.

("Interesting" is clearly a code word for extraordinarily medically ridiculous. Duh.)

Ya see, instead of celebrating the release of my business with green juice cocktails and sparkly shoes, I celebrated with a night in the emergency room and a saline drip. Coincidentally, this grand celebration coincided with Mr. Restarting My Hard Drive's 30th birthday...and nothing says party time quite like ringing in your big birthday on the horribly uncomfortable plastic chairs in the ER (Yes, I'm accepting nominations for Wife of the Year 2013).

My tribe at Mayo thought I had an infection in my bone marrow biopsy sites. The ER determined that I had a virus. Two and a half weeks of a high fever later, it was determined that I actually had a sinus infection and pneumonia. Details.

In the midst of all of this respiratory loveliness, I "treated" myself to my very first MRSA scare (check that puppy off the bucket list!). Turns out I don't have MRSA, I'm just allergic to my feeding tube.

Yep. The one I've had for years.

I mean, why not?

So when life hands you fake-MRSA, pneumonia and a sinus infection, you are supposed to rest. A lot. (Ya know, the whole lungs are compromised but you need them to breathe thing).

But if, hypothetically of course, your levels from your non-existent thyroid decide to skyrocket up at the same time as said infections, let me assure you that there will be no resting. Yes, there is a reason it is called hyperthyroidism.

Purely hypothetically, of course.

(But just so we're clear, I'm still baffled that an organ that I no longer possess can turn me into an insomniac robot. A robot with frizzy hair. Because the organ I no longer possess can also change my hair texture. Clearly.)

On the plus side, my file cabinet has never been so organized.

Needless to say, recovery was a wee-bit delayed and may or may not have taken more than one round of gluten-dairy-yellow dye-sulfa-penicillin-free antibiotics. Short of losing my mind, I did what anyone would do to save their sanity.

I cleared my schedule and got out of dodge.

For a week, I disappeared with my family to the Pocono Mountains in Pennsylvania...the home of my cherished yearly family vacation for the past 30 years (34 years for Ma and Pa!). I replaced doctor's appointments with bike rides and disability paperwork with long naps. I played cards with my hubby and read three books and even got my parents to start their day with green juice shots.

I slowed down. I breathed (thank you antibiotics!). It was glorious.

I recommend a good dose of "escape from reality" for any ailment. Except beware of that whole "have to come home eventually" thing. It's a dagger.

But now that I'm home, and no longer an emphysemic robot, I'd like to finally raise a proverbial glass of green juice - to summer,  to hair elastics, the dawn of a new medical month, and most importantly to you. Thank you for allowing me to share my new adventure with your unparalleled love and support.

Cheers to health and happiness, my friends!

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.

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.