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.

Happy Mayo-versary!

Happy 2013 and happy Mayo-versary!

Yes friends, it has officially been one year since the start of this blog and the rapid increase in my frequent flier miles.

Now, imagine my shock today, when there was not a personalized red carpet leading into the clinic and no one showered me with sparkly confetti upon entering the elevator. I mean, I wasn't even offered free frozen yogurt for a year!

Sigh.

Maybe they are waiting until the end of this stay? This Friday I'm sure there will be the "big reveal" of a life-size sculpture and "Best Patient Ever" plaque. I better make sure my yoga pants and fleece are ironed...the paparazzi is sure to be there.

In any event, I am back in lovely Rochester, MN, where the high today is 16 degrees Fahrenheit (this is actually a major plus, when I was here in December, it was a high of 1...). Tomorrow I have appointments with allergy, neurology and neuro-opthalmology and Thursday I have a follow-up with my internist (sidenote-my Dad calls her my "quarterback." The poor woman is in charge of coordinating all of my care. I owe her a lot of cookies). Obviously Friday is free of appointments due to the massive celebration for my Mayo-versary. Duh.

In other news, this past Friday, I saw an ENT (ear, nose and throat, or otolaryngologist for you fancy pants out there) in Philadelphia who specializes in all things relating to the thyroid. I will admit, I was very hesitant (read: crabby) about going, as I must admit to being a little doctored-out. That being said, the appointment was set up by a very dear friend, so I decided to give it a shot (read: stop being a wimp) and boy am I relieved that I did! The doctor was incredible and was able to look at the situation in a way that no one has been able to thus far. In a matter of minutes and with a very brief examination, he looked at me and said, "So your larynx is tethered."

Oh. Right.

Can we, um, un-tether it?

If you look at yourself in the mirror when you swallow, you'll notice that your larynx goes up and down. Likewise, if you continue to gaze at your neck while projecting your voice, singing, speaking, etc. you will notice even more movement of the little box of wonder. Suffice it to say, these things cannot happen if my larynx cannot move.

Apparently a larynx can become tethered with severe Grave's Disease. When your thyroid is inflamed, it pushes down on the larynx and all of the surrounding muscles. Over time, your body slowly adapts to those changes and the muscles tighten up to try and protect the vital organs (reason #2304982039840 why our bodies are absolutely brilliant). When I had my thyroid removed, the stress of the surgery and the massive amounts of scar tissue clamped everything down further, and now my larynx is frozen.

There are a few options for treatment, but really only two worth mentioning (ridiculously vigorous massage doesn't really apply when the scar tissue is over your windpipe...). Option #1 is another surgery and option #2 is injections of steroids every 4-6 week to try and release the muscles and break down the scar tissue.

I think the choice is rather obvious.

Unless there are any objections from my doctors here at Mayo or my endocrinologist at home, I will start the injections on the 18th and go from there. They are supposedly super painful, but the doctor is very confident that they will enable me to swallow again. He can't promise that the injections will allow me to sing again, as he thinks there may also be some further nerve damage, but it should certainly make the situation a bit less severe.

The most common side effect of the injections, other than the obvious pain and bruising, is that they tend to make the scar bright white. Luckily for me, as the doctor so kindly pointed out, that won't really matter with my skin tone....

Hey, being Casper can have its advantages.

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.