Scary Good

There is no way to properly express the mixture of joy, relief and productivity I feel each time a family purchases a bottle of my tick repellent.  It isn’t about profit.  After all, at this point, frankly, I earn only about two dollars per order.  But I didn’t decide to do this as an income.  Just like I didn’t decide to create this blog as a means of profit either.  It’s about so much more than money.

It’s about creating awareness of the potential devastation of Lyme disease and other tick-borne illnesses.

It’s about educating others so they can safeguard their families as much as possible.

It’s about teaching listeners how to properly remove a tick and the steps to take if a bite victim becomes symptomatic.

It’s about empowering you to advocate for yourself and your loved ones.

Nearly three years ago when I was bitten, I never saw the tick.  This isn’t surprising considering the average size of a deer tick in the nymph stage is about the size of a poppyseed.  Yes, those tiny specks on top of your muffins.  That’s what we’re up against.

Because I was bitten on the back underside of my arm, I couldn’t see the 3 or 4-inch bulls-eye rash that ultimately developed around the bite.  It happened on my wedding day, and in the hubbub of a destination wedding without a mirror in sight, the rash went completely unnoticed by our dozens of guests.  We danced and laughed, and I vividly recall wondering if this was the peak of my life.  I thought, “I can never be happier or feel more whole than I do at this exact moment.”  Surrounded by our children, family and friends, life felt “scary good”.

Have you ever experienced scary good?  The hyperawareness that your life in a given moment is as close to perfect as you could ever imagine, and then the subsequent fear of losing it?  The knowledge that the next step will likely be less-than the perfection of now?

As our photographer and dear friend snapped this photo, those were my thoughts.  For the first time in ages, the pieces all finally fit and my life felt right.  However, with that knowledge of overwhelming contentment came a trickle of fear that I couldn’t fly this high forever.

Whether it was skepticism or a sense of foreboding, I wasn’t wrong.

One month later, my childhood friend was killed by impaired driver on her way home from work.  The grief hit hard, particularly for the loss her two daughters, each just six months younger than mine, would endure for the rest of their lives.  I struggled to function.  Sleep either didn’t come or it came with harrowing dreams.  In an effort to deal with the anger of this senseless loss, I jogged harder and further, pushing my already exhausted body each day until the tears ebbed.

This lapse in the care of my body allowed the Lyme spirochetes to come alive, burrowing into my tissues, joints, heart, and, eventually, my brain.  I overlooked every symptom, blaming the headaches and fatigue on my lack of quality sleep and the occasional flu-like symptoms, including fever and achiness, to the side effects of dedicated teaching, parenting five active children, and consolidating two households.  It wasn’t until I landed in the cardiac unit four months post-bite that I took notice of my health, and by then, it was too late.  After two positive Western Blots, I was diagnosed with late-stage Lyme disease.  This diagnosis perplexed every doctor, every specialist, every person who did NOT know someone with Lyme disease because 1) we didn’t live in an endemic area, 2) I did not remember a tick bite or a rash, and 3) Lyme carditis is only seen in 1% of Lyme patients (according to the CDC at that time).

Until I started treatment in December, the only thing I knew about Lyme disease was that it originates from a tick bite.  I remembered my mother “checking my head for ticks” as a child, but we had no clue how drastic the consequences could be.  Truly, had I noticed the rash initially, I doubt I would’ve taken the time to go to the doctor.

If you’re a mom, you understand this.  We monitor our children closely, noticing every sniffle, every fever, every “off” behavior and taking them to the doctor when we first notice illness.  But when we get sick, we muddle through, only seeking medical care when our symptoms become dire.  After all, our mom-duties don’t pause just because we need to.  We keep moving because we think we don’t have time to spare for ourselves.

Until life as we know it stops.

I struggled to breathe.

A pain stabbed my upper back with every breath.

My chest felt like I was suffocating.

Upon standing, my heart rate would race to 200 BPM or higher.

The fatigue was so deep walking the five feet to the bathroom left me too tired to walk back to the bed on my own.

Black dots would begin to form in my line of vision, and then I’d wake to find myself on the cold, sterilized floor, my heart rate plummeting to the 30s.

I thought I was going to die.  I was so certain of this that my attorney completed the paperwork –the medical power of attorney, the living will, all of my dying wishes –at my bedside in the cardiac unit.

When I was finally diagnosed weeks later, I naively assumed with that diagnosis would come treatment and a cure.  I thought life would get back to normal.  Little did I know I would anguish in this physical state for months, fighting desperately to stay alive, if only for my children, then later wishing I had died because living a life of pain and non-existence was harder than dying.  I was a burden to those I loved and I wasn’t even living; I was just existing.

I’d been undergoing treatment for over six months by the time our first anniversary rolled around.  At the time, I was experiencing the first taste of remission, finally beginning to feel alive.  I wrote and shared the anticipatory post on this event, lavishing over the unwavering support of my husband through the hell of our first married year and sharing one of my favorite unedited wedding photographs.  Within an hour of publishing, a reader private messaged me, “Please look at the back of your arm!!!”

It wasn’t until that moment that I realized my wedding anniversary was also the anniversary of the tick bite leading to my Lyme disease.

It was a difficult reality to accept.

Months later, missing my sons’ soccer and football games was harder.

A year later, retiring from teaching was the worst.

But the constant, debilitating pain, the hovering fatigue, and the intermittent array of bizarre symptoms left me unable to return to my old life.  I barely had the stamina to be Mom, let alone be a teacher.  I needed to save every drop of energy for my children.  I would rest all day just to be able to eat dinner at the table with my kids.

It required a dramatic shift in perspective.

I had to find some good in my ordeal, some purpose, and writing provided a bit of this.  With every reader I touched, my pain and loss felt a little bit more meaningful.  With every mom who messaged me, asking how to help her child, my purpose became clearer.    And with each prayer, said in exasperation or in grace, my relationship with God became stronger.

Now, with each family using my homemade tick repellent Attack-a-Tick, I know the good I’ve so desperately sought lies also in providing ways for families to be safer.  Whether that be by creating Lyme disease awareness, providing education on prevention and treatment, advocating for those struggling with this illness, or mailing packages of tick repellent all over the country, my life has meaning once again.

Last week, a post I’d written urging readers to create tick kits was syndicated on the popular Scary Mommy website.  I have to admit I get a selfish little thrill every time I see my byline, but even more exciting is the fact that the post has been shared over 5,500 times on Facebook.  Thousands and thousands of individuals have viewed the post.  Many commented –some positive and appreciative of the advice, others clueless of the potential devastation of this disease.  Both types of comments though creating awareness.

Much like I underwent after losing my sense of identity, our society also requires a dramatic shift in perspective when it comes to Lyme disease.

I’m not the only one shouting this information from the rooftops.  Many celebrities, including Avril Lavigne, Amy Tan and Ben Stiller, have talked openly about their private struggles with Lyme disease.  Hundreds of fellow Lymees are raising money for more research.  The CDC recognized the likelihood of a tremendous increase in ticks this year, which will undoubtedly cause a quiet epidemic of Lyme disease well beyond the estimated 300,00+ new cases each year.  I use the word “quiet” because so few will be properly diagnosed due to the pressure on the medical community and vastly inadequate testing.  Those who aren’t diagnosed early will likely battle this disease for the rest of their lives as an effective treatment protocol for late-stage Lyme disease has yet to be established.

Our greatest hope lies in extensively more research to conquer testing, treatment, and, possibly, prevention by vaccination.  As federal budgets currently look at drastic cuts to the CDC and NIH, the prospect of this hope becomes less and less likely, especially considering research for Lyme and other tick-borne infection is already woefully underfunded.  Until this changes and breakthroughs transpire, we must rely solely on our own prevention and proper steps when that prevention fails.

The medical community’s reasons for being skeptical of my diagnosis are no longer valid.  The notion of endemic areas is ridiculous.  You can be bitten anywhere.  With ticks smaller than our tiniest freckles, it easy to understand why few see the instigator of their illness, including this bride on her wedding day.

There is also little excuse now, nearly three years later, for the level of my ignorance back then about Lyme disease.  It is my mission to wipe out this ignorance and to encourage people to be vigilant.  Each post, each package of tick repellent, each Facebook share gives more purpose to my pain.

With these factors in mind, I am currently offering two bottles of Attack-a-Tick for $20 plus shipping.  While supplies last, I am also including a 4×10″ Ziploc pouch with a checklist for a tick kit.  This little giveaway is the perfect size for the recommended items and is a sturdy case, especially for camping and hiking.  Buyers also receive a product pamphlet on the tick repellent, a booklet on Lyme disease and a bookmark explaining how to properly remove a tick provided by the CDC, and a Lyme awareness ribbon sticker.

I love the amount of information included with each purchase, and these pouches are ideal for housing tick kits, your portable, just-in-case insurance.  After all, prevention by using a tick repellent is just the second step.  The first is the power of awareness, and with that comes the knowledge that with the number of ticks infiltrating our environments rapidly increasing, it is impossible to deter them all.  Thus, the third step is knowing exactly how to react if a tick is found or symptoms appear.

CLICK HERE TO PLACE YOUR ORDER!! (THIS LINK WORKS NOW!)

My life now certainly looks very different than it did this time three years ago.  I’m barely identifiable in comparison.  Yet, with that comparison and the perspective I have gained from this transformation, there are still moments of scary goodness.  They are no longer the big events, like weddings, birthdays, or graduations.  No, those savory moments are in the quiet ones.

Watching my 12-year-old daughter walk with confidence and tremendous faith.

My granddaughter reaching for me and nestling her warm head in the crook of my neck.

A smile across the room from the man who somehow still loves me, even in my brokenness.

Listening to my six-year-old, my baby girl, talk about what she wants to be when she grows up, and silently praying I’ll get to be here to witness it.

These are the scary good moments, but now, there is much less fear of what could happen and infinitely more gratitude for what IS.

Perspective is a blessing when we finally embrace it.

I hope our society accepts the reality of Lyme disease and develops a different perspective before it is too late.

Keep coloring, my friends. XO!