Thursday, April 3, 2014

A Virtual Blog Post

FRIENDS!

I know...I KNOW.

It has been twenty forevers.
(I learned that phrase from my mother-in-law...it's a good one, no?)

Anyway.
There is so much to update!

I moved!
And turned 31!
And bought QuickBooks!
(Um, hello. I went to school for studio art and elementary education. This IS, in fact, life-altering news.)

But most importantly, you should start planning your trip to LA now.

Why?

Well, #1 - it's warm there. Also, sunny. Most notably - not snowing, and NOT "Sprinter."

But secondly, because I'm totally going to have a star on the Hollywood Walk of Fame.

I know, you must be thinking that they are making a movie about my S'Mores cupcake, and I don't blame you...because that would be a pretty sweet movie!

(SWEET movie...get it...)

But actually, a local journalist named Brian Hooks (check him out! http://brianhooks.weebly.com) caught wind of this here blog...and decided that YouTube needed a serious increase in sparkles, cupcakes, and medical mystery.

SO...without further ado...

https://www.youtube.com/watch?v=EDFAXk4FyhE


I wonder how Prada feels about an Oscars dress with feeding tube access...


Thursday, February 20, 2014

Closets Always Tell a Story

Healing is a funny thing.

The term implies that there is a definite end point...but I'm not entirely sure this is true.

This Sunday, we will shove all of our earthly possessions into a crammed Uhaul and move to a new home, a whopping 1.6 miles away.

So I've been packing.
And packing.
And packing some more.
And it has been weird. And emotional. And quiet.

A lot has changed under the roof of this house.

And all of a sudden, amidst boxes, dust bunnies, and the contents of my closet, I found myself sitting on my bedroom floor, surrounded by my former life.

Running tights,
horseback riding helmets,
teacher clothes,
two-piece swimsuits,
choir uniforms,
17 t-shirts from Wolftrap Elementary School,
awards, certificates, ribbons,
and my expired passport.

And as I sat there, taking it all in, I was really rather dumbfounded by the magnitude of it all.

Odd, because those items are from my life.

But maybe this was the first time that I saw it all together.
Maybe this was the first time that I felt the loss of what was in one fell swoop.
And I sat there, quietly.

What do you do with boxes upon boxes of a life you don't know if you will ever live again? Do you give them all away, or do you hold on and continually relive the memories? As we heal, do we truly leave all wounds behind? Or do we continue to carry them through life?

So many questions.

These questions, and others, have stayed on the forefront of my mind for the last 2 weeks.

I've pondered.
And noodled.
And daydreamed, as I do.

The truth is, I don't have the answers now.

That's ok. I don't need them.

For where would we be, without unanswered questions? How would we try new things and forge new paths?

More questions.

Someday soon I'll look back at that moment with gratitude. I'll look back and smile, knowing that the stories in my closet encouraged me to grow.

To find new passions.
To dive headfirst into my new career.
To make new memories.

Maybe I already am.

And as I smush our belongings into the truck this weekend, I'll be lugging along the cherished stories in my closet. I'll remember what was and look forward to what is to come.

I'll take a deep breath, and continue to heal.


Friday, January 31, 2014

Trading in my Pills for Parsley

I don't quite align with the phrase, "everything happens for a reason."

It just doesn't sit well with me.

It almost works...but...doesn't quite make it.

To me it implies too much of a sense of false comfort. I'm not ok with justifying senseless acts of terror, and friends and family living with diseases, and countless other heartbreaking realities by proclaiming that they happen for a reason. And furthermore, implying that the knowledge of that reason should offer support and solace.

It may work for some, and that's ok, but it's not for me.

I do, however, believe that we have the power to use every life "happening" presented to us.

I use the word power on purpose - because that's truly what it is - empowerment through experience and choice and opportunity. A constant reminder that the choice belongs solely to you.

After the euphoric high that my mom is cancer free and my dad is continuing to be the most resilient team captain of physical therapy ever, my life hit a crater-like pot-hole this week.

I really and truly reached the end of Western medicine.
There are no more tests to be done, doctors to be seen, or treatments to endure. It's over.

I had joked about reaching the end, but when my doctor gently handed me my lab work and proclaimed that I was "an exceptional hot mess," I have to admit that I was a little bit shell-shocked and bewildered. I half expected the border patrol of Western medicine to leap out, demand a viable medically-treated body, and deport me to Mars upon examination.

I had known reaching the end was an extremely likely option - my liver had been staging protest after protest, and every set of lab results came back a bit more bolded than the week prior, but...really? The end?

Even if I still get compliments on my new yellow hue??

Indeed.

In fairness, I had a little warning. I was recently rejected from the National Institute of Health's Undiagnosed Diseases Program. They claimed I was out of their league and that there was nothing more they could offer. Every test had been run and mercifully, they didn't want to put me through them again.

"Undiagnosed disease a little too undiagnosed to be diagnosed."

Or something.

So I've reached the end. My body has waved the white flag - er, spastically quaked is probably more accurate - and this chapter has come to a close. My liver needs to heal and I need to grow some white blood cells, stat.

No more antibiotics. No more 43 pills in a day. No more diagnostic tests. No more plan.

Perhaps the weirdest of all is the realization that barring any acute and accidental type of injury, I have very little use for a hospital.

Bizarre.

So I'm starting over.
Again.
And sitting down on the couch with bewilderment, frustration, loneliness, and heartbreak feels a bit like welcoming back a circle of old friends.

But ya see, here is where that choice part comes in. Day in and day out, we have a choice. We have the power to choose how to use what's happening. I could plop into a ball or I could learn and grow and carry on.

So after a deep breath with my four old pals on the couch,
and tree pose,
and maybe a cookie (or three)...I chose joy.
And laughter.
And perseverance.

I have reached the end of Western medicine, but not all medicine. Luckily for me, I'm not the first Lyme cowgirl in this rodeo, and an herbal treatment plan called the Cowden Protocol has been around, and effective, for years. It's no trail ride in the park, and the chemo-like side effects are identical, but it's a way to drive out my tick-borne foes while keeping my vital organs intact.

Which I'm told is, ya know, kind of essential.

So I'm trading in my pills for parsley.
And I'll carry on.
Because even though this may not be the life I expected, it is the life that has happened, and a constant gift of adventure and gratitude.


Everything doesn't "happen for a reason," but everything empowers us to make a choice.
Today, I choose parsley, and I choose joy.




Tuesday, December 24, 2013

Shine On

In my family, December has always meant lights in the windows. 

Velvety thick red ribbon twisting up the staircase.  

Sending cards to friends and family, near and far.
And racing to the mailbox every evening.

And sitting at the top of the stairs with my brother, counting the seconds until we could go clamoring down to the tree.

December meant lighting Hanukkah lights with my Dad and reading our vast collection of Christmas books with my Mom.

December meant singing along to “John Denver and the Muppets” as we drove down to Baltimore. 

December meant giving. And cheer. And magic.

It’s no secret that I love December. 

(Minus the cold part. That goes without saying.)

But this year, December hasn't been exactly what I expected. 

And I know, I should be quite used to rolling with the unexpected. 

But this time, December played a harsh game of dodgeball, and the unexpected reached a new level. 

My dad had bilateral knee surgery, that was supposed to be easy…or as “easy” as repeat bilateral knee surgery can be. 

Goes without saying, it wasn't easy. 
And the recovery is slow, and painful, and frustrating.

Relying on others for rides and medicine for pain, is isolating and scary and majorly lacking in holiday cheer. 

Then out of left field, my mom was diagnosed with Endometrial Cancer, and is now prepping for a hysterectomy in early January. 

Boom. 

Nothing says “Happy Holidays" quite like a big ol' cancer diagnosis, yes?

And just for kicks and holiday giggles, my liver is inflamed.
And I’ve been benched from treatment. Again.

As much as I’d like to tell you otherwise, my family spent a good deal of December sitting in stunned shock.

We spent much of December in disbelief that our hopes for a 2014 free of surgeries and recoveries and drug protocols have gone swiftly down the drain, long before the ball has dropped on New Year’s Eve. 

I can honestly tell you that I ache for the days when my biggest stressor was sitting in traffic. Or getting a cold. Or the fear of sleeping through my alarm.

(Which, for the record, I have never, ever done.)

I didn’t really know how we were going to dig ourselves out of this slump of shocked, and really quite angry, disbelief. I felt helpless.

Where was our magic? Where was the spirit of the holidays? Where were our lights and cookie swaps and merriment?

And for the record, haven’t we already done this medical journey??

I mean, people, let’s be real here. I bought myself a tri-sectioned pill box as a holiday gift. Yes, they all begin with a P but this pill box is no puppy, nor is it a pony.

(Although in defense of my pill box, it is multi-colored! And has easy-open tabs for “elderly hands!”)

But ya know, I have to admit that when I stop and think about it, the true spirit of the holidays has never been more alive and magical.

Magic doesn’t always have to come in the form of boxes, and puppies, and bows.

The spirit of the holidays is about love, and giving, and holding close those we hold dear.

And in my family, we are blessed with those gifts in abundance.

The true magic of this December is the realization that without even trying, my family has become a well-oiled machine of leaning, and supporting, and loving. 

Magic is realizing that we aren’t doing this alone, and being filled with unending gratitude for our family and friends.

We are strong and we struggle, there are moments of ease and moments of frustration, but a strand of lights only illuminates a home when they all make the choice together to rise up, stand tall, and shine on. 

So this holiday season, we choose to reach out our hands and invite you to join us. And no matter what you may believe or what obstacle you are facing, I hope you will join us in the spirit of joy, and peace, and magic.

Rise up
Stand Tall
Shine on.

Merry Christmas.

Saturday, December 7, 2013

Plot Twist

Friends!
I know, I know...I did it again.

That thing where I finally get back into blogging and it feels so wonderful to be writing and communicating again and then POOF.

Radio Silence.

Crickets.

White noise.

And all of a sudden it's December 7th and I haven't blogged in a month.

I want to apologize. 
And those who know me well, know that I am REALLY fighting back a very sincere "I'm sorry."

(Senior superlative in high school? Most Apologetic. Yep. That's right. Can't wait to brag about that one to my grandkids...)

So in my wise old age of thirty years, I'd like to cancel the "I'm sorry" oozing from my pores, and instead share my new motto:

Ahem.
(Clears throat. Prepares vocal chords. Drinks water.)
All together now...

PLOT TWIST!

Right. So remember my last blog post where I confided to the world that I was struggling a bit in the land in between? And how for the first time in my life I felt truly "ill?"

Turns out that wasn't exactly just an emotional feeling. Turns out my white cell count was ridiculously low and my liver was so inflamed that it was leaking liver enzymes all over my body.

Ya know, like if the washing machine chucked fistfuls of Tide everywhere EXCEPT the inside of the machine with all of the dirty laundry.

Oh and that subtle yellowish-pinkish glow in certain lights? 

Right. 
Not a glow.

Although based on the number of compliments I received on my skin tone, I'm thinking "Pre-Jaundice" is going to be THE most coveted blush color of the season.

In any event, I was benched from any and all treatment for a month. 

Yep, A MONTH. 

Initially I was less than pleased to be a month behind in treatment, but then I secretly (or maybe not so secretly to my darling husband) became a wee bit excited to feel semi human for four entire weeks!

We've reviewed how my tick friends have invaded my brain stem, yes?

Good, because maybe then you'll judge me a little bit less for having ridiculous moments of false optimism that I would feel super fantastic without a functioning liver and/or an adequate supply of white blood cells. 

[Insert yellowish-pink sheepish face here]

So I slept a lot. I'm talking 12 hour nights with 2 hour naps kind of a lot. I'm talking days when going up and down the stairs twice warranted a fist pump and a gold star. I juiced my veggies, took fistfuls of liver supplements, and if it wouldn't have taken me ten minutes to get up afterwards, I probably would have been down on my knees literally begging for this liver situation to be temporary. 

Luckily, after a month of rest and a visit to my friendly neighborhood phlebotomist, my liver earned a good report and my body returned to normal, err...its usual alien self. 

So I did the completely logical thing and celebrated by restarting the treatment that caused the liver problems in the first place. 

Right. 
Because that makes sense?

My doctor and I decided this was the best move. It wasn't an easy decision, but for better or for worse, the drug cocktail was working (remember the herxing? sick = working) and that's not something to be taken lightly. So I'll take a deep breath and try again. I'll throw all of my cards back in and see what we get, albeit a little bit more cautiously this time. Instead of doing two weeks of treatment followed by one week of rest, now I'll do two weeks of rest and hope that gives my body enough time to recover. 

It's a leap of faith. 

A scary, pull-the-rug-out-from-under-you, leap of faith.

I'm a health coach. I teach people to listen to their bodies as a profession. 
And yet, I'm completely ignoring mine?

I almost feel like a fraud.

But the more I've thought about it (and if you refer to my last post, you know I spend a LOT of time stuck in my brain), isn't EVERYTHING a leap of faith? Isn't everything in life about throwing all of your eggs in a basket with a splash of glitter and a whole lot of hope?

We think we can control so much. We plan and prepare and line things up and follow directions...but it's all just in the hopes that things will work out exactly as we expect them to. 

And so often they don't.
Despite our very best intentions and preparation, we get thrown off the cliff on an adventure that does not match the luggage we packed.

Bathing suit and flippers in Antarctica? Um, brr.

It's jarring.
And scary.
And sometimes it takes a while to find our sea legs, but we always do.

Because in the end, it's really just a plot twist, and you might as well hang on and make it a best seller. 




Monday, November 4, 2013

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?


Saturday, October 5, 2013

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!