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.