Time to Organize the Holiday Socks

Happy holidays blog friends! No matter where you are or what you celebrate this month, I hope you were able to enjoy some love and laughter with your family and friends.

Speaking of exciting celebrations, this was a pretty fantastic holiday gift...

http://www.sarahkayhoffman.com/2012/12/21/why-lydia-buschenfeldt-is-gutsy-never-giving-up/

In any event, following a lovely needle-filled week at the Mayo Clinic, I opted out of a second week of medical mania in favor of a lovely holiday spent with family. The semi-unfortunate part of that decision is that I do need to return to balmy Minnesota in January...but the ability to spend this holiday week with my family and friends has been just the pick-me-up that I needed. Let's be honest, I just didn't want to miss out on the holiday feast. Shockingly, not one relative asked to share my egg whites and sweet potato Christmas dinner...can you believe it?!

I had planned on writing a blog post today full of results and plans moving forward...but we aren't there yet, and that's ok. The most recent trip to Mayo was only a week, but was likely the busiest trip yet. Most days I arrived at the Clinic around 7:00 and left around 5:00, and nearly every hour was spent in appointments and tests. Exhausting? Absolutely, but also satisfying to know that my time there was well-spent and efficient. When I return in January, I will see neurology, allergy and internal medicine again, along with neuro-opthamology (Didn't know this existed? Fear not...you aren't alone).

In addition to the obvious remnants of the darling super-virus, my doctors are working on some theories about what else may be going on in my body that is halting the healing process (ya know, other than the obvious daily green juice and frozen yogurt dance party). There are theories of Graves' Ophthalmopathy, Myasthenia Gravis, Mast-Cell Disease and other such fantastic holiday gifts, but I will hold off on explanations(boring you to tears?) until things are confirmed/denied.

I think the GI nurses are most anxious about my upcoming return visit with neurology. When I showed up for my feeding tube change wearing only a hospital gown and fabulous candy corn socks, they all of a sudden started speaking to me like I was 2 and asking me questions about the date and what holiday was coming soon.

What? You don't celebrate the amazingness of candy corn 365 days a year? Weird.

Just your typical week in Minnesota...

Well friends, I’ve been here in my “home away from home” since Sunday night and you can all rest assured that I am up to my usual shenanigans.

Ya know, 5 appointments have turned into 12 and a blizzard showed up last night.

Typical.

Following an hour-long appointment with my internist and 2 rounds of blood work on Monday, I enjoyed a lovely little anesthesia-induced nap on Tuesday during my feeding tube change…which turned out to be fortuitous rest for Wednesday’s marathon.

I was supposed to just meet with the neurologist yesterday, but during the appointment he scheduled me for 3 additional appointments and 1 additional test. These all magically appeared on my schedule as occurring on December 24^th and January 4^th. Funny, because my tail feathers plan on being firmly planted on my outgoing jet this Saturday.

The Mayo Clinic has this fabulous system of being a “checker.” It’s basically the same thing as flying standby in an airport. You show up, beg your sob story, waggle your very best puppy dog eyes…and hope for the best. You stare into your tiny pink pager, willing it via telepathic communication to start buzzing and reveal that someone has mercifully canceled his/her appointment (or that the cookies you slid across the desk really did the trick…shhhh).

Yesterday, I managed to get into 2 appointments and 1 procedure that are supposed to be for next week. Score!

I met with the neurologist, swallowing specialist and speech pathologist, did a repeat swallowing study (they really need to invent barium holiday cookies) and got more blood drawn. Just another day on the red carpet?

I could bore you to tears with all of the minute details, but the outcome of all of the appointments was pretty much the same. Everyone sees what I am talking about in terms of decline of fine-motor control, speech distortion, inability to project my voice, sing or swallow solid food, and so on…but no one can figure out why.

To be honest, I really wasn’t at all surprised. The power of an out-of-control virus is an unknown entity and there may be many more unexplained symptoms in my future. My goal of this trip to Mayo is to figure out how to navigate moving forward. How do I know when to call the doctor or when to just know that the “viral carnage” has found a new location? I’m not interested in taking fistfuls of pills every day and strongly believe in the body’s ability to heal…I’m just looking for some guidance on how to facilitate that process. Besides the obvious increase in frozen yogurt consumption, because clearly that is the necessary elixir of life. Duh.

Side note: The frozen yogurt shop here has mint for the holidays. Best. Discovery. Ever.

My neurologist wants to run a few more tests over the next few days (and hopefully not  on January 4^th) and assuming those all come back negative, we will move forward. Today I will hang out in a tiny tube (MRI) for a few hours and fingers/toes/all body parts crossed, I will meet with the neuro-ophthalmologist before I leave on Saturday as well. Perhaps I need to start baking…who can resist warm cookies?

Fear not though, the excitement is not over. Tomorrow morning, I will meet with my immunologist…who gets the lucky job of figuring out why I still break out in hives and sneeze a minimum of 300 times daily.

Obvious answer? Forget more cowbell, we need more fro yo. 

Learning to take the plunge

I get asked a lot about my “safe” foods. In the world of food allergies and digestive disorders, safe foods are a very common topic. In short, these are the foods that people can safely eat without having to worry about allergic reactions and/or digestive distress. Many people smartly waltz around with a nice list of safe foods tucked away in their wallets and they casually hand the list over when ordering food at a restaurant. However, for me personally, the term “safe foods” just makes me laugh.

It makes me laugh because I have a grand total of two “safe foods.”

Egg Whites

Rice Chex

Bust out the Michelin Stars baby, because those make one heck of a gastronomic paradise. 

Eat your heart out Bon Appetit.

So obviously rice chex and egg whites are not the only two things I eat, but they are the only two things that I can absolutely 100% guarantee will not cause any unwanted symptoms. So does that mean that every other food on earth causes symptoms? Sometimes yes, but often no. It means that I’m never quite sure what reaction I will get from any other food and I have to be prepared for anything and everything.

Which is, ya know, fantastic for trying to plan anything.

It is no secret that I have been known to list “using organizational supplies” as a hobby and I’m not ashamed to admit that I actually enjoy organizing the files on my flash drive (ok…maybe I’m a little ashamed…). I have lists for my lists and keep my highlighters in color order in their pack. In short, I like structure and I like organization.

Side note – You could blame my parents for my intense proclivity towards post-it notes and highlighters. Growing up we had a weekly “calendar night,” which occurred every Sunday night, despite the giant protests from my brother and me. Don’t show up to the table without your planner, you will be sent away.

Hmm…the apple did indeed fall from a tree I suppose.

So what do you do when you only have two “safe foods” and you are the type of person who highlights your daily schedule with 4 different colors?

The answer is plain, friends. You get over it.

You take a deep breath and you take a risk. Over and over again.

I may never really know why my body reacts the way it does, nor may I ever truly understand exactly what happened with that virus back in 2010, but that’s ok.

It really is.

As humans, we like to categorize everything in our lives as good or bad, safe or unsafe, okay or not okay, but I am learning that pushing each and every facet of my life into a compartment doesn’t work for me. In fact, I find it exhausting. Life is going to be life regardless of whether I label it as good or bad. In fact, what happens if I look at every new challenge as "perfect?"

I’m not saying this is an easy task. It is hard work and I need to remind myself constantly (cue: gold star post-it, duh). Yes, I spend a giant portion of my time dealing with symptoms that I wouldn’t necessarily place on my Amazon wish list, but I’m alive, I am loved and I have a whole heck of a lot to place on my gratitude list.

Forget walking around on eggshells with the "safe foods," let’s break out the boots and head for the bubble wrap.

Home for the holidays...?

Forget nutrition, I think it is time that I run for mayor.

Or get a Minnesota driver's license.

Or have a building named after me!

Or maybe a frozen yogurt flavor?? Oooooo yes.

You see, by the end of this year, I will have spent at least one third of 2012 in Minnesota. That makes me a resident, right?

Yes. Minnesota. My home away from home.

So one would think, based on the last two years, that there is not a single organ/system in my body that has not been studied, tested, poked and prodded. In fact, so many of them have been tested, re-tested and re-re-tested that you would think it all evened out in the end.

Nope.

Wrong.

A few weeks ago, during one of my speech appointments, my wonderful SLP gave me "the look."

Ya know, the "I reeeeeeally hate to ask this, but we need to run just ooooone more test. I promise this is the last one" look.

You'd think I'd know by now that when "the look" comes out, I should run swiftly in the other direction. In fact, forget run, I should go for a full out sprint. Insanity is, after all, doing the same thing over and over again and expecting different results.

Needless to say, I am not Einstein.

My SLP explained that all of the swallowing studies that I had already done showed still images of my esophagus, but they really didn't provide enough information for her and my doctors. What they really needed was a video.

Or they just really wanted a video of a giant chewing skeleton to project on the side of their haunted houses for Halloween. Also possible.

A few days later, I headed to the hospital for another swallowing study, this time with a video. By now, I certainly have the drill down pat - swallow the fizzy tablets, bloat up like a walrus, swallow a disgusting amount of barium products while standing on an X ray table and "enjoy" albino insides for the rest of the week. As instructed, I brought some props - rice chex, bread and crackers, and the radiologist dipped them all in barium so they could watch me swallow.

Side note: When the radiologist promises you barium marshmallow fluff for your study, it is neither made of marshmallow, nor is it fluffy. In fact, it comes out of a toothpaste tube and in no way bears any resemblance to my elementary school fluffer-nutter sandwiches. Now you know.

After the test, I asked the hospital SLP and radiologist if they had any thoughts and they invited me to stand with them while they reviewed the video. I know, I know, there are serious perks to celebrity status!

SLP: "So when did you have a stroke?"

"Um...I haven't had a stroke."

SLP: "Oh...are you at risk for a stroke?"

"Not that I know of?"

SLP: "Ok so you must have had a brain tumor. When was that?"

"Um...no...?"

Right. So apparently my dysphasia (difficulty swallowing) is being caused by a neurological malfunction and was definitely not caused by my thyroid surgery. The vocal chord paralysis and dysphasia are now definitively two separate issues. And as crazy as this is to believe, none of the umpteen-million doctors I have seen have thought about my noggin and even crazier, in the umpteen-zillion-million tests I have had, none have included an MRI of my brain.

I looked left. I looked right. Come on, I'm being Punk'd right?

No Ashton Kutcher.

Personally, I think my doctors at Mayo have caught wind of my tendency to bake a ridiculous number of tasty treats during the month of December, and they want in on the action. I mean, who can blame them? I know I can't make reasonable decisions with images of oatmeal scotchies, chocolate crinkles and gingerbread men dancing through my mind. Can you?

So the week before Christmas, I will be heading out to Rochester to deliver cookies, greet my fan club, sample new flavors of frozen yogurt...oh and hang out with neurology and get a new feeding tube.

Wait, those aren't some of your holiday traditions?

Weird.

Accepting a New Identity

I don’t think it is a big secret that a lot has changed in my life over the last two years. As this journey has progressed, there have been tremendous gains and life lessons that I feel incredibly blessed to have learned at a young age-lessons that have grounded me and shed light on what is important in a way that no other life experience can. But there have been tremendous losses too, and as much as it is difficult for me to acknowledge loss, I am learning that it is a necessary part of moving forward.

I don’t want to tell you that I have completely lost my identity, because that would imply that the core of what defines me as a person has changed. I have, however, lost some essential elements of what I believe helped to shape my identity in the first place. Two years ago I could have told you that I was, among other things, a teacher, a runner and a singer. Today I am none of those things, and even just putting those words in print takes a deep breath (and perhaps a piece or two of pumpkin bread…).

I think one of the things that makes these losses cut so deep, is that none of them came with any sense of closure. All of a sudden, I couldn’t run anymore and just as suddenly, a 1% chance of vocal chord paralysis became a harsh reality. When I walked out of school a week before Thanksgiving last year, I really and truly believed that I would be back in a few days. I had written detailed plans for the substitute, explained to the students that I was having a little procedure on my stomach and I told them that I would be back on Monday. It has been nearly a year, and many Mondays have passed without my return.

Hindsight can be such a jerk. Yes, if I think about it now and analyze where I was a year ago, I can easily see that I was functioning purely on adrenaline, in a body that was dehydrated and malnourished well beyond the realm where any surgery would be easy. It doesn’t take rocket science to see how cutting a hole in my stomach and jamming two feet of plastic into my intestines would jar things up a bit. Thank you, Captain Obvious.

But to be honest, at the time Captain Obvious was nowhere to be found. When you are in that body, trying to live your normal life and juggle your doctors appointments while thinking about the needs of 28 fourth graders…things that seem so obvious now just don’t cross your mind. Nearly a year later, it still pains me to know that I unknowingly lied to my students. I never, in a million years, thought I would be here, writing this blog nearly a year later, as a person who has been labeled as disabled and hasn't been in a classroom since 2011.

So yes. There have been losses and I am still, as my father says, “peeling the onion." But, I have also made giant improvements in the last year. I am, without a doubt, infinitely healthier in mind, body and spirit. I am learning to adjust to my new normal and not think of my life as being paused, but instead as taking a new path. This path has not been the yellow brick road that leads me to the wizard (I do however spend a good amount of time in sparkly shoes). It is a path that has taken many twists and turns and one that has ultimately led me to the heartbreaking conclusion that it may be time to move on in my career.

I feel a bit like a broken puzzle piece, one that after years of over-use and a little adversity, no longer fits properly back into the completed puzzle. The puzzle piece looks like it should fit right in from far away, but when push comes to shove, it just doesn’t snap into place. I have attacked every new obstacle in my path with the mindset that if I can overcome it, I can return to teaching. But that race of hurdles becomes more and more difficult when you realize that you aren't the same puzzle piece that you were two years ago.

I’m not ready to say that I’m not a teacher and I haven’t given up hope that things may suddenly return just as swiftly as they left. However, right now there are three big obstacles and an entire score of sub-obstacles standing in my way of being the teacher I want to be. Even if you momentarily ignore the fact that I have zero immune system or that I still get at least a third of my calories from a tube, I still get an FUO (that’s fever of unknown origin…not flying unidentified object) at least 4 days a week, I can’t talk for more than an hour at a time and most days I...er...let's just say I spend more time in the bathroom than I spend out of it. These three things alone are not exactly conducive to providing a quality education and no one knows how long they may stick around.

So moral of this extraordinarily long-winded blog post is to tell you that today I went back to school-not as a teacher, but as a student. I’m starting a year-long program through SUNY’s Institute for Integrative Nutrition to become a certified health counselor. I will be certified through the AADP (American Association of Drugless Practitioners) to counsel children and adults in any aspect of health and wellness, but I’d like to eventually focus on people who have had life-changing diagnoses, surgeries and/or allergies. I still have the piece of paper from the day I was diagnosed with gastroparesis that told me to eat only chicken broth, ensure, carnation instant breakfast and mashed potatoes. Yep, that's it. I mean, slap my face on a Wheaties box, because clearly that diet would make me the picture of health…

I managed to pull myself out of that deep level of malnutrition and failing health, but it was the hardest thing I have ever done. If I have the opportunity to pay it forward and make that transition to health and happiness easier for someone else, then I simply can’t pass it up. I think, to truly heal, I need to allow all that I have learned throughout this journey to shine through the losses.

It is quite an odd juxtaposition, to say the least.

I am thrilled to start this new journey into the world of nutrition and my heart flutters to think about the possibility of feeling useful and needed again. At the same time, I am absolutely, positively heartbroken to consider the possibility of leaving behind a career that I deeply love and desperately miss.

But, for now, I'm taking a deep breath and stepping over the mountain of what-ifs and maybes.

For now, my sparkly shoes and I are drinking our green veggie juice and plunging headfirst down a new path, with open eyes and a full heart, ready to see what lies ahead.

Keeping the Medical World in Business

My friends, my apologies! I know that you must be anxiously chomping at the bit since I left you hanging with my last post. Likely you are experiencing some serious symptoms of SCA, skin-chunk-anxiety that is. You may be tossing and turning, you may be biting your fingernails but most likely you are pounding massive amounts of candy corn. It's ok, it happens.

So my chunk of skin and I made it safely across town to the pathology lab at the hospital. Upon arrival, I went to registration, as instructed.

"Hi, can you please direct me towards pathology?"
[Insert snarky tone] "Ma'am, why do YOU need to go to pathology, it's not for patients."
"I understand, but I have a skin sample to drop off."
"Well just where is this skin sample then?"
[Reach into purse, calmly hold up bio hazard bag containing chunk of skin]
...
No words were spoken. Just a finger pointed to the left.

Once my skin was dropped off, I had to wait two weeks for results. You'd think this must have been a really long and stressful time of twiddling my waiting fingers. However, I take my role as "primary contributor to the medical world" very seriously, and I managed to squeeze 11 other appointments in between skin chunk biopsy and skin chunk results. I know, I know...shoe-in for patient of the year!

One of my many appointments was my first meeting with the speech language pathologist to work on my vocal chords. The SLP was wonderful and obviously very knowledgeable. She spent most of the hour hearing me make an assortment of ridiculous noises and asking me how things felt-don't worry, the track will be for sale on itunes shortly, search under "mostly hairless strangled animal." Turns out I wasn't giving my intuition and years of voice lessons enough credit when I awkwardly laughed and said, "I'm sure it isn't the case, but I just really feel like I'm being strangled all the time."

"No you are correct, you are being strangled."

Uh. Um. Right?

So post thyroidectomy, my nerves had a quarter-life crisis and decided to do something rash. Instead of buying a fire engine red convertible, my nerves decided to step it up a notch and attach themselves to different muscles. They fire when they should...but instead of speaking, singing, swallowing solid foods or projecting my voice, I strangle myself.

Eat your heart out "America's Got Talent."

In other news, a few days ago I received the results of my skin biopsy, stating that I had Fifths Disease.

Right. The &*%$#$ virus that caused this whole blog in the first place. The virus that lives no longer than 6 weeks at the most. The virus that I had almost 2 years ago. The virus that you can only get once. Right. Glad that's all cleared up.

Needless to say, some follow-up blood work was done by my extraordinarily confused doctor and I'm awaiting results.

Now the possibility that I have seronegative syndrome has come up several times in the last few years, and as a result of my skin biopsy and some blood work, it came up again. Seronegative means that for some unknown reason your blood does not produce the antibodies that show up when tested for various autoimmune diseases. So basically, you will always test negative, even if you have a disease that needs to be treated. Ya know, just to make sure you are really paying attention. That blood, a rebel without a cause!

The latest theory is that I have mastocytosis. It goes without saying that mastocytosis is an orphan disease, meaning it affects fewer than 200,000 people world wide. So ya know, that part fits.

Mastocytosis is a condition where you have too many mast cells in your body. Mast cells help your immune system defend your organs from disease by releasing chemicals, such as histamines, to alert you to a problem. As all dutiful followers of Claritin/Zyrtec/Allegra know, anti-histamines prevent you from having allergic reactions. Therefore when you have too many mast cells, you have a ridiculous amount of histamine in your body and you react adversely to everything.

And when I say everything, I do mean everything. The steri-strip used to close my skin biopsy site? Yea, had to dig that sucker out when my skin swelled up and over the strip overnight. The needle site used to take my blood? I could audition for "Attack of the Giant Mosquito." Oh and Mederma, when you labeled your scar therapy as "hypoallergenic," you clearly hadn't met me.

You get the idea.

So I've started a 3 week trial of medicine that suppresses the mast cells in my body and if I do, in fact, have mastocytosis, the medicine will help to decrease the symptoms. Luckily, "hurry up and wait" is my specialty.

Just to keep me on my toes, the medicine has to be taken 30 minutes before meals, and has to be at least an hour apart from thyroid and reflux medicine, which have to be 4 hours from each other and taken on an empty stomach. Always a good sign when the pharmacist pauses, makes a grimace and starts biting her nail when you ask her about timing your medications. So, I take my thyroid medicine, wait an hour, take the mastocytosis medicine, wait a half hour, and then I can eat breakfast. Then I wait an hour or so and repeat the entire process before my next meal.

So, anyone up for lunch today?

Just give me about two hours, I'll be there.

Hanging out with my good pal Murphy

Let me cut it to you straight, I'm thinking of changing my name. To Murphy.

Perhaps Murph E. Slaw?

Has a nice ring to it, and is considerably easier to spell than my current surname.

Worth pondering.

If you haven't already picked up on this, I have a certain, well... proclivity shall we say, towards murphy's law situations. As I mentioned in my last post (yes, the one where I bored you all to tears with my musical resume), I've lost some function in my throat and vocal chords. Over the last week or so, I've gone through extensive testing to try and pinpoint where specifically the problem is located.

Last week, I started with vocal testing. In a nutshell, the doctor stuck a giant black tube with a camera down my nose and throat and then watched me make a fool out of myself...er...watched me read and sing. I thought it was bad enough when the doctor handed me a laminated passage and asked me to read it- first normally and then while attempting to project my voice. But then my doctor asked me to sing...and she wanted me to sing as loudly as possible, so she could record it. So, not only did I give the world's worst rendition of "Amazing Grace," but it is now recorded for all of time. After my studio recording session, I felt it necessary to explain to the doctor and technician that I normally can actually carry a tune. They both smiled politely...and then glanced at each other with that "Suuuuure" look. Stupendous. I'm just waiting for my youtube debut.

Fast forward a few days to my esophagram. The point of an esophagram is to see if there are any abnormal masses in your esophagus, to locate any unusual narrowing and to watch your muscles and nerves fire as you swallow. So you hang out in an xray machine, in hospital gown fashion of course, and swallow a ridiculous amount of barium while the radiologist snaps pictures. Just to spice it up, it took 2 full 8-ounce glasses of barium, 2 barium tablets, 3 barium dipped marshmallows and a half a cup of barium dipped rice chex before the radiologist was satisfied with the pictures. 

My stomach was thrilled, let me assure you.

So the verdict is that I have neuro-muscular damage of the upper esophagus. In non-doctor speak...I have nerve damage. There was literally a 1% chance of this happening from my thyroid surgery. Just call me Murphy.

The nerve damage prevents me from speaking for a long amount of time, projecting my voice, singing and swallowing solid food without difficulty. Next week I will start voice therapy, on the off chance it helps...my doctors aren't optimistic, but it is certainly worth a try. In a few months, I will have more invasive testing to be able to pinpoint the exact nerves that are damaged and in August (a year from surgery) I will have the option of looking into microlaryngeal surgery...which clearly also comes with its own set of risks and scars.

To be honest, it is way too much for me to process right now. So I'm coping the way I cope best.

I'm laughing. A lot.

I mean, COME ON!

I can see the headlines now: 

"Woman tries to start eating again and loses the ability to swallow"

"Teacher works hard to return from disability and loses the ability to talk"

"Former singer chosen for the role of Strangled Cat in upcoming Halloween Film"

Could it be? Finally my chance for an Oscar??

To further my absolutely stellar track record for the week, today I paid a visit to an allergist that my GI has been begging me to see. According to his website, he specializes in the "unique and bizarre."

Ha.

The poor nurse practitioner was sent in to meet with me first. She asked for my medical records, I handed her my 3-inch binder, and she decided to take a seat. After I spoke with her for awhile, she left to go speak with the doctor. We've all been in doctors' offices...the walls are rarely very thick and you can hear a lot...especially when the doctor has a deep, baritone voice. For the next ten minutes, I heard a muffled female voice, followed by...

-"Really?"

-"But what about...Oh"

-"She has already been tested for that? Are you sure"

-"No! That can't be right!"

You get the idea.

At one point, someone came bursting into the room, looked at me for 10 seconds, and then closed the door and walked out. No words spoken.

Yep. I'm real. I promise.

In fact, the doctor and nurse practitioner liked me so much that I get to go back tomorrow! Today I gave them 7 vials of my blood and tomorrow, they would like a chunk of my skin.

Yes. A chunk of my skin.

Since I'm still breaking out in a daily rash, despite the complete removal of all things yellow dye, the doctor would like to biopsy one of my hives. But, ya know, since this is pretty unusual, they don't have the equipment to get results in the office...so I will need to transfer my sample to the lab after my appointment.

Roughly translated, I will drive across Fairfax with a chunk of my skin in a lunchbox. Normal.

In other news, the doctor suggested that I try and get a hive in an unusual spot tonight, because the biopsy will leave a scar.

Now if only I could locate my copy of "Getting Hives for Dummies"...