The Land In Between

I've been spending a lot of time lost in thought lately. In fact, I'd say most of October was spent percolating thoughts between my two ears. I've always been a fairly introspective and reflective person, but this has been on a new level - truly lost in thought.

I've been noodling (totally a verb) and I believe there are many contributing factors - first, I spend an absurd amount of time waiting - on hold with the medical provider/disability rep/feeding tube nurse of the day, in waiting rooms, for my IV to finish, to eat after medications, for clients, the list goes on and on.  Pure, uninterrupted waiting. 

Secondly, my treatment has caused a lovely case of tinnitus - better known as constant ringing in my ears. Yes friends, I may be lost in thought because I am literally trapped in my own head. Think hundreds of crickets at a ceaseless chirp, 24 hours a day, 7 days a week. Cricketpalooza 2013.

Lastly, and likely the most pertinent, is the fact that whatever shreds of memory, focus and attention I had before, have packed their bags and gone on a long vacation (They better not be on a giraffe safari without me...) A common "bonus gift" of tick borne treatment that affects your brain stem is memory loss. And lack of focus. And inability to sustain attention. And...oh, that's a nice dog. 

I think I want a cup of tea. 

No, but really - think about it. How many 5K runs and fundraisers do you see for tick borne disease? Lyme Disease is the 7th most common nationally recognized disease, and I can't think of a single bake sale (and I don't forget a good bake sale.)

Why, you may ask?

Because no one would finish the race. And I have it on good authority that baked goods don't bake in an oven that's not turned on (insert sheepish face here…).

Inevitably if "my people" actually showed up for a race, at least half would forget sneakers. And of the ones who actually started the race, most would forget what they were doing mid run,  some would lose their balance and fall over, or despite clearly marked race boundaries, almost all would certainly need both a GPS and a guide to finish. 

People. 

From a person who started this journey as type A and a half, this is the real deal. Last week I walked up two flights of stairs, only to get there and have absolutely no clue why I was there. And let me assure you that someone with ridiculous fatigue and swollen joints does not walk up two flights of stairs unless she has a really good reason. 

Ya know, like a cookie. Or a pony. 

But regardless of the cause, I have spent a lot of time alone with my brain, and I must admit that what I found has really rocked me. 

Adjusting to a “new normal” is hardly anything novel at this point. Dealing with new medications, and the baggage of allergies and side effects that comes with them is old hat. I collect diseases like cookbooks and many friends and family members turn to me for medical advice, because, frankly, I don’t charge a co-pay!

So why have the past 2 months been among the hardest?

Sure, life has been challenging physically, but I mean difficult in the "who am I, what am I doing here, and what on earth happened to my body?" department. 

I’ve been noodling these thoughts for weeks. I would jot down a random thought here and there, but they never connected. Or maybe they did, but I got distracted. There are pretty things all around, after all.

But finally, while driving down the gorgeous, quiet roads to get my infusion this week, it dawned on me. 

I feel like I’m “sick.” 

For the first time in my life, I feel…ill. 

And those thoughts both terrify and annoy me.

It may seem bizarre to hear me say that I’ve never felt ill before, given the stories that lie within the posts on this blog. But these stories are just my obstacles, and I believe that everyone has obstacles. Everyone has to run the steeplechase instead of jogging casually down the trail. Some obstacles are move obvious than others, but no one gets a free pass. These obstacles shape who we are and how we look at the world, and everyone faces them, in some way shape or form. 

So even though I’ve spent the last 3 years chasing an undiagnosed disease that has had a hot mess field day with my body, I never felt like I couldn’t simply adjust to the new obstacle and move forward. Besides, I always loved the hurdles.

But what about when the hurdle morphs into a giant rock wall surrounded by a mud pit?

I know the world of chronic disease inside and out. I know how to manage my symptoms and I know how to step back and restart a bit when the plan goes off course. I know that there is no "cure" for many facets of my disease collection and I have accepted that and learned to make a life of health and happiness with my new body. I learned how to make it work, as long as I followed a fairly strict set of personally-mandated guidelines.

But, this new world? This new world is an obstacle that I don’t know at all. This new world takes my personally-mandated guidelines and throws them back in my face.

In this new world, everything is inside out and upside down. I keep waiting for the Great and Powerful Oz to jump out from behind my curtain, or for Willy Wonka to show up at my door in a glass elevator. (And though it's a close call as both would involve me feeling like a giant among the miniature people, I'd prefer Oz...because he comes with green horses wearing coke bottle glasses and I'm pretty sure Willy Wonka is just way too creepy.)

Welcome to a moment in my brain.

So, I’ve somehow firmly wedged myself between the worlds of acute and chronic illness. 

Ya know,  “Acunic” or, “Chrute."

I imagine my life right now is somewhat like driving in England. You have to navigate the same life you've been living, but from a completely different vantage point. And let me assure you, my friends, that there are no guide books for the Land In Between. When the chronic bus and the acute train collide and cause a giant wreck, State Farm does not just appear to help you pick up the pieces. (Pshah. And they claim to be a good neighbor.)

But I've decided, during my 234028304823 moments lost in thought, that it doesn't really matter if I'm "sick" or not. It doesn't matter that my white cell count drops like the Tower of Terror. It doesn't matter what adjective is given to me by myself, a doctor, or really anyone else for that matter. Though this Land In Between is new, and certainly challenging, it is just another obstacle, and I'll get through it like we all do - one step at a time. 

In many ways, I think life is like one big scavenger hunt -  just when you get to point A, you have to jump over a rushing river and find point B, only to find out that point C is at the top of a mountain that you have to walk up backwards. The point is that you keep going.

So though it may take me some time, the only thing I really have to do is keep going. Step by step, no matter how slow, eventually I'll find the next point on the scavenger hunt.

Now more importantly, does anyone know why I’m upstairs again?

Bug Slamming: Level 1

Happy October, friends!

Yes, despite the (lovely!) 80 degree weather, it is in fact October. Crazy, huh?

September was sort of a blur.

I was diagnosed with the grand slam of tick borne diseases.
I started treatment for aforementioned grand slam.
I got slammed by the doubly aforementioned grand slam.
In theory, my little bug friends got slammed too.

Or at least that's what I'm telling myself?

When I started my treatment regimen, the only thing I was told was that it would be extremely similar to chemo. Now, seeing as I was extraordinarily blessed to have gone through cancer treatment without a single lick of chemo or radiation, that didn't actually mean much to me.

Most of the first couple of days of treatment went something like this:

[Swallows giant handful of pills]
8:30 AM - How am I feeling now?
8:31 AM - I think my head hurts
8:32 AM - No, my head doesn't hurt
8:33 AM - But my left toenail definitely does
8:34 AM - Do I feel sick?
8:35 AM - I'm definitely dizzy.
8:36 AM - Maybe I should have a cookie.
8:37 AM - Nope, definitely my head and not my toenail.
8:38 AM - Hmm I definitely feel different than I did ten minutes ago.
8:39 AM - Wait, it hasn't even been ten minutes yet
8:40 AM - I'm really going to need that cookie
8:50 AM - Ok, how about now?

Ya know, just your average twenty minutes on a Monday morning.

This lasted for a few glorious days, and juuuuuust when I was starting to think that this treatment thing was going to be a rice cake, I got slammed.

Now let me be clear that I already had OODLES of respect and empathy for my family and friends who have gone through chemo. But now? I bow at your feet.

Well, I would, except I would probably get too dizzy and fall over.

The bizarrely strange news is that this is actually a splendid sign. It's called the Herxheimer reaction, or "herxing" for short. (Use it in a sentence this week. Your friends will be so impressed!)

Basically when you take antibiotics for a massive infection (or ya know, 3 or 4), the antibiotics do what they are supposed to and kill the infection. However, those little darlings don't just die and evaporate to bacteria heaven. Instead they die and release harmful toxins into your body. Bacterial sepsis, if you will.

Ya know, just to throw one last "MUA HA HA HA!" your way.

But like I said before, this is sort of good news.
Body full of dead bacteria?
Weird.
And gross.
Ok absolutely disgusting...but somehow better than a body full of living bacteria...?

On the plus side, built in Halloween costume for 2013! Woop!

So my treatment cycle is on for 2 weeks, off for 1, with a weekly IV infusion thrown in there too. They tell me that the IV is doing something medically important...but I think it's just a (very welcome) ploy to get to hang out with this handsome face on a weekly basis.

Puppy + IV = Not too shabby

My doctor has a yellow lab puppy. Which is fantastic. And clearly makes the fire liquid seeping into my veins infinitely more tolerable.

Let's be honest, who needs drugs when there are PUPPIES around?!

Well played doctor, well played.

The infusion nurses are also fabulous, and keep me entertained with things like this:

That moment where you don't know whether to laugh or scream? I recommend laughing. Always.

As I mentioned before, this whole world of tick-borne illness is extremely controversial. Especially in the late stage Lyme Disease category, hence the cartoon.

Which leads me to my next topic, treating 2 infectious diseases and a parasitic disease just seemed so...mundane, so I thought I would throw one more into the pile.

Despite the fact that my test for Lyme Disease came back negative, it is pretty hard to believe that I have 3 other tick-borne diseases and NOT the classic one. It's kind of like having a cinnamon roll from Sweet Freedom Bakery in your hand and not eating it...I mean, I guess it's possible, but it just doesn't happen.

My doctor's theory is that my immune system is so...er...special at this point, that the Lyme cells are just dormant. He believes that my test for Lyme will become positive after a few months of treatment. Luckily for me, the treatment protocol for Bartonella and Lyme is pretty similar, so it doesn't really change much of my plan at all.

So now I just need to track down a tick with Rocky Mountain Spotted Fever, and I'll be set!

(Universe. For the love of Whole Foods, I am JOKING. No really. That was 0% serious. Please?)

Let's review:
1. Champion Herxing Status
2. Built in Halloween costume
3. Weekly puppy time

Puhlease. And they told me this would be rough. Hasta la vista infections!

A Game Changer, perhaps?

So, I spend a lot of time with doctors. 

In fact, this morning I directed someone to the bathroom and instructed them how to label their urine sample. 

True story.

[Last name first, my friends, then first initial.]

But after my most recent trip to Mayo in May, and the "official" diagnosis of a never-before-seen undiagnosed disease, I decided I really needed a break from the medical world...

...which lasted approximately 72 hours until I landed myself in the hospital with pneumonia. Oops.

So after a few rounds of pharmaceuticals and a most lovely family vacay, my spirit was renewed and ready to embark once again upon the Great Medical Leave of Absence.

Right, you know where this is headed. Didn't last long. 

My extra special mystery disease has proven to be progressive and one of my resume boosters is the ability to break formerly functioning body parts while doing absolutely nothing. The giant polka dot elephant in the room knew that eventually this would prove problematic as the disease continued to move, but it has always been more tolerable to blissfully sip my green juice and watch Downton Abbey.

Friends, consider it problematic.

I won't traumatize you with details, but simply put, my inner alien has spent the last few months traveling to my lungs, my bladder, and now my brain. Medical hiatus officially over.

Fueled with renewed vigor to continue searching, in early July I saw a physician about 30 minutes from my home. The doctor listened to my story, examined me from head to toe, and tried to look through my medical records without too many "youhavegottobekiddingme" looks.

A couple "chapters" into my records, he looked me square in the eye and casually told me he knew what was wrong with me.

Um...what? I must have heard you incorrectly?

"Lydia, you have Lyme Disease."

Now, I'd like to tell you that this was some sort of interplanetary cosmic moment where the sun parted cloudy skies, trumpets announced the arrival of silky white horses, and rainbows spilled from the heavens.

Nope. Didn't happen.

My scout's honor very first (thankgoodnessinmyhead) thought?

CRAP.

Yep, crap.

From my research, my studies, and own health investigations, I knew that Lyme Disease treatment was SUPER controversial. As in people have lost their medical licenses kind of controversial. As in people agree more about politics than they do about Lyme Disease kind of controversial. 

I am talking the Sharks and the Jets, people.

And, as a sidenote, haven't I been tested for this before???

So I have spent the last few months taking myself to the Lydia Buschenfeldt School of Tick Borne Disease. I have read countless articles and spoken to PhD students currently conducting research. I snuck into a medical library and read case studies. I spoke to pharmacists and I spoke to herbalists. I joined online forums and asked questions. I read books and interrogated every doctor in my path.

Short of holding a summit of the Deer Ticks of America, I've covered just about everything.

See the thing is, if this really and truly was the path for me, then I wanted to know that the decision I made about treatment was one that was backed by my own personal extensive research and understanding. 

I note the controversy, I understand the options, and I have to be able to make the best treatment choice for ME.

So I handed over 15 vials of blood, I researched, and I waited. 
Then I got called back for more blood, I researched, and I waited. 
And then I waited some more.

It goes without saying that "waiting" is really a code word for "losing my mind."

Turned out my waiting/stressing/what-if-ing was one heck of a waste of energy. 

I do have a tick borne disease. In fact, I have three.

Yep, three.

But Lyme? Yea, that was negative.

Yes, friends, I am in possession of two fancy-schmancy tick-borne infectious diseases, Bartonella and Babesia, and an extremely rare (duh) protozoan parasitic tick-borne disease.

I start treatment on Monday, and while I am "excited" to be getting rid of these things, I'm still progressing with much trepidation. I will be taking HEAVY loads of antibiotics that will eradicate everything in sight - good, bad, and in between. While I don't have the best track record with drug side effects, it will likely be the die-off symptoms of the infections that prove to be the most challenging.

Yes, die-off. As in a body of dead bugs.

Feel free to start renting me as party entertainment.

It's a pulsing schedule, so I won't take the drugs every day and I will likely begin to learn the schedule of what days I will be a functioning human being, and what days I'm better off planning to be home. This treatment will likely go on for at least a year, but will be augmented along the way to address all of the different diseases.

It goes without saying that it is next to impossible not to wonder if this is "it." Has this been the problem all along? Have I literally taken up residency in freezing cold Minnesota when I had diseases from a bug the size of a poppy seed?

Yes, of course I wonder. Despite a body full of bugs, I am human.

But wondering is really and truly, an energy vampire. It will suck the life out of me if I let it. I may never know the cause of my hard drive crash. I may never completely reverse my symptoms. That's ok.

The way I figure, I have a lot of diseases. 

In fact, I have more diseases than I do fingers and toes.

So, in my book, it can't hurt to start scratching three off the list, right?

Prepare yourself bugs, the end is in sight.

The First/Last Day of School

This morning, many bleary-eyed students and teachers stared unbelievingly at their ringing alarm clocks, dragged themselves out of bed, dressed in their pre-determined and much thought about first-day-of-school outfits, and headed back to school.

[The health coach in me would like to think that everyone ate a healthy breakfast too...?]

I didn't pack my lunch. I didn't wear a new dress. I didn't go back to school today.
And that's still a little weird, and maybe a little bit sad.

Mostly because I didn't get to buy a first-day-of-school dress. Duh.

Ok fine, also because I miss teaching more than words can describe. That too.

But ironically, instead of starting school this week, I finished.

Yes, that's correct. Listed as an expert in my field. Booyea/Holycannoli.

Board certified, licensed and graduated health coach, and owner of Hatch Health and Happiness, LLC!

[Cue "Pomp and Circumstance"]

Graduating from school online is a completely bizarre situation.

I had no idea what to expect, but was hoping for something similar to when you win computer solitaire.

Much to my displeasure, there were no flying cards. Nor was there online confetti.

A crime, I know!

Instead, these highly ecstatic and laudable words filled the screen:

"Congratulations. Please complete the course evaluation form."

WOOHOOO! Break out the kombucha! Throw the cap in the air! Head immediately to Whole Foods!

Because NOTHING warrants a graduation splurge at Whole Foods quite like completing a course evaluation...am I right?

Hm. Well let's hope so?

So there you have it. 

I'm official! 

Now my husband can't ignore me when I ever-so-casually suggest that he fill his plate with more vegetables!

No really, he can't, right?

And as weird/sad/new-dress-less as this first day of school was, I'd like to give a shout out to the universe for sending a big, fat "It's going to be okay" my way.

Much appreciated universe, many thanks.

Keeping the Faith

You know that feeling when you leave a big test knowing you totally aced it, only to have it returned to you covered in red pen?

Or when you stay up late and don't do your homework because the weatherman literally promised that there would be a snow day, and not a flake of snow falls from the sky?

Or maybe when you were super excited because you had the most votes on your scholarship essay, and when you see an envelope in your mailbox from the Mayo Clinic, you tear it open because you are absolutely convinced that it is a letter declaring that you won...and then it's just a giant bill?

Yea, I'm there.

Friends, the truth is, you did your part and then some. As I said in my last post, you shared and emailed and liked and commented. You blew me away with your support and faith and thanks to you, on the last day of voting, I had the most votes by a landslide.

But the judges didn't pick me.

It's like being voted captain of the team and never leaving the bench.

I'd like to tell you that I brushed it off easily.
I'd like to tell you that I really didn't care that much.
I'd like to tell you that I hadn't already started a list of questions and specific items to address at the conference.

But I can't.

I was crushed. I might still be a little bit crushed.

[Ok fine, guilty as charged.]

Something inside of me was so sure that this was my chance to do something big. I just knew it.

Turns out digestion isn't the only area where my gut is lacking.

So it's certainly not the first time I've been kicked down a mountain I hoped to climb. And it's certainly not the first time I've been disappointed. But somehow this one dug just a little bit deeper and is taking a little bit longer to heal.

But if I have learned only one thing throughout this whole journey, it is that every kick down the mountain is an opportunity to learn. I have to have faith that my cards are playing out in a way that opens the doors for growth and experience.

I just have to.

Faith is a big word.
It means so many different things to so many people, and in my opinion, none of them are wrong. Faith is an extremely personal and reflective piece of our lives and it manifests itself differently in all of us.

And that's ok.

But for me, right now at this moment, faith is the foundation on which I stand. It is the hope in the unseen. It is my confident belief that though I may be disappointed, this is a chance for me to grow and learn and dive a little bit deeper into who I am. After all, unexpected as it may be, nothing can be lost by an opportunity to look a little farther into your inner workings and find out what really and truly lies at your core.

And although there are some days when it is really hard to keep the faith and it is really hard to breathe deep and know that greater things are ahead...I do my best.

Ironically, one of my favorite movie quotes is from the 2000 rom-com "Keeping the Faith," a true VHS classic. "The truth is you can never tell yourself there is only one thing you could be. You cannot make a real commitment unless you accept that it's a choice that you keep making again and again and again."

I was surprised.
And crushed.
And yes, maybe even a little bit bitter. [insert sheepish face here]

But what I do with those feelings is up to me, and I want to make the choice again and again and again to keep the faith. I want to be open to new experiences. I want to let the feeling of your amazing support rise above the stab of disappointment and pave a path towards opportunity.

So I'll do my best.

After all, I hear it's pretty chilly in Minnesota.

This Story is Not Over

Do you ever have those moments where you wonder how on earth you are going to describe a feeling, when you already know an adequate adjective doesn't even exist in the first place?

No?

Well I'm having one of those moments right now.

Friends, in short, I am blown away. 

Voting closes in a few hours (see my last post for details!) and there are goosebumps on my arms when I tell you that I never, in my wildest dreams, could have imagined the support that has come from every corner of the globe. I am beyond humbled and moved by your unwavering belief in me and regardless of the outcome, I will carry the warmth of your thoughts with me for many years to come.

And just so we're clear, I'm writing this post while under a blanket and wearing sweatpants, a fleece, and fuzzy slippers in August...so you can have it on good authority that those are 100% authentic emotional goosebumps.

Just in case you were skeptical of my rock-star status circulation. 

In other news, two weeks ago I cleaned out my classroom.

I had been dreading it for weeks. 

And there may or may not have been sappy country music songs on repeat during the drive to school, because you can't exactly prepare yourself to see seven years of teaching packed into brown boxes in a corner office.

But, truth be told?

It was kind of fun.

Ok fine. 

After a good friend arrived, and after I put on my Finding Nemo hat that just happened to be on the top of the pile, and after I started finding hilarious photos of my amazing students...then it was fun.

That really surprised me.

Over these last few months, I have spent so much time pondering how I would find closure and how I would really move on and how I would take the next step in my life...that I missed the fact that I already did.

The truth is that this story is not over.

Yes, I was forced to leave a career that I love, but I have a new one that continues to stretch and challenge me with each passing day.

Yes, I had to fight back tears when I ran into students who hugged me and asked when I could come back to school, but now I have clients who are showing me how to teach in a new way.

And yes, this is so very far from the life I imagined, but what a privilege it is to be part of this most unexpected journey.

So friends, from the very bottom of my heart, please accept my most sincere gratitude. Thank you for lifting my spirits, thank you for your unwavering support and dedication, and thank you for believing in me. 

Contest or no contest, I won't let you down.

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!