Wander with Sarah S: How Living with Lyme Changed My Life

By Sarah S.
Follow Sarah's work at sarahsreads.com

Are there moments in your life where time stands still? Is there a memory, tucked away, that randomly resurfaces, causing you to do a double take or gasp for a breath? Have you ever had so much knowledge, but no precise idea of the future?

If you're anything like me, all of these scenarios can be imaginative or reality.  

Did you ever go to explain yourself just to realize you suddenly have zero sense of thought? Were you ever so motivated to get going, yet suddenly and inexplicably halted, dead in your tracks? Has anyone ever looked at you, confused by your demeanor and fatigue?

I know this sounds like a merry-go-round of scenarios and questions, but what if this was your life? What if you had to suddenly rediscover the new, chronically ill, constantly fatigued, brain fogged version of yourself?

Would you believe me if I told you life would never be the same? Life won’t always be bad. It won’t always be sad and lonely. What if I told you it would take an entire decade for you to muster up enough motivation and energy to give yourself another chance; against all odds?

Eleven years ago, my life took a strange turn after I was diagnosed with Lyme Disease.

Today I live to tell the story. I live to share my experiences of pain, loss, confusion, and physical rehabilitation.

THE HISTORY OF LYME DISEASE

Lyme Disease is a tick borne, bacteria based illness, that causes an infection that spreads throughout your nervous system. During the early stages of Lyme, you can expect symptoms such as: fever, headache and fatigue. If you’re lucky, you’ll notice a bulls-eye style rash taking shape somewhere on your body. Please understand the context of my words, when I spew phrases like, “if you’re lucky.” Some people go several months, years, or their entire life without a correct diagnosis due to the lack of visible rash symptoms. Would I actually consider those with the bulls-eye rash lucky? Not in the least. Do those who show rash symptoms have a larger window of treatment turnaround time? Yes.

Medical treatment can take anywhere from two weeks to six months. Sometimes, six months turns into a lifelong battle with antibiotics, holistic treatments, prayers, tears, mental issues, decline in physical health, and so much more. Sometimes I don’t even know where to begin when describing my battle-turned-journey. But then again, I am a Lyme Disease patient. I have to remind myself my brain and thoughts rendered can still be a little wonky from time to time.

MY TRUTH

Have you ever had one of those young adult moments where you knew too much was too much? Does that even make sense? Let me try and explain, reader's digest style.

The day before my official diagnosis, I was overwhelmed with self sabotaging procrastination. My very (insert sarcasm here) bright nineteen-year-old self thought multiple doses of Adderall would make all my problems disappear. Yes, the adderall was prescribed by my doctor. No, I did not follow the instructions. Do you see where I’m going with this? In conclusion, all of my tasks were completed.

Mini Disclaimer Break:
In case anyone wanted an extra back story. I grew up in a very comfortable bubble. Thanks, Mom & Dad for giving my sister and I a very cozy, educational and love based life.

I, to this day, never experimented with drugs. From time to time, my NOW thirty-year-old self partakes in the occasional adult beverage, but never to excess or abuse.

Taking an extra dose, or two, of adderall is as juicy as it gets. Sorry folks; nothing too scandalous here.

Anyway, I will never forget waking up after a fraction of a night's sleep to the WORST headache, pains, and sickness I have ever experienced. No joke, my non-experienced self thought I had overdosed from too much Adderall.

I will never forget convincing myself NOT to tell my father because the disappointment and confusion from him would be much worse than the pain I was, at the time, suffering through.

News Flash:

I wasn’t suffering from an Amphetamine overdose. Come to think of it, I really didn’t even take that much more than the prescribed dosage, I was just a young, naive, unexperienced, “wanna be” adult.

Fast forward to a few hours later when the small bullseye rash formed on my left thigh.

THE WORST AND BEST DAY OF MY LIFE

Call this cheesy and cliche, but my life changed forever that day. For once in my, then, short life - I was in the right place at the right time.

Who knew that the local Patient First clinic was one floor beneath the Johns Hopkins Lyme Disease Research Center?

I thought it was a joke when the nurse told me that the Director of Infectious Disease from JOHNS HOPKINS was going to come downstairs and take a look at my bug bite. The Director of Infectious Disease sounded so intense and daunting.

Let me tell you, the Director of Infectious Disease saved my life; not once, not twice, not three times - but continues to care for me with each additional bug bite and life trauma I’ve faced since that very day.

THE JOURNEY

From that day on, Dr. John Aucott, Director of the Johns Hopkins Lyme Disease Research Center and Associate Professor, has been my primary care doctor.

Since the moment he removed the fully burrowed tick from my leg, this brilliant man has stuck by my side for every single symptom, trial, and tribulation that has occurred in my life.

Quickly after that initial, and fortunate, meeting in the local minute clinic, I joined a two year case study called SLICE - Study of Lyme Disease Immunology and Clinical Events.

This program quickly taught me that Lyme Disease was more brutal than imagined.

Without getting into the knitty gritty details, the past ten years have brought on a life I never imagined.

Since the original diagnosis, eleven years ago, symptoms have been a stagnant and recurring battle.

One of these days I’ll tell the story of the time I lost all function in my hands and couldn’t hold a pen or pencil.

One of these days I’ll tell the story of my unexpected move home from college because getting out of bed was too difficult.

One of these days I’ll tell the story of the extreme weight gain, intense hair loss, and mood swings that came along with an unexpected battle with depression.

One of these days I’ll tell you about the horrific sunburn, caused by Doxycycline, that had me so scared and discouraged, I didn’t go outside for more than a few moments at a time.

One of these days I’ll tell you about the decade of years that I missed because I was too busy feeling sorry for myself, not graduating college, feeling like a loser, and completely giving up on myself.

However, today is the day I tell you about my soul searching fight for freedom.

Today is the day I tell you about my passion for Mental Health treatment and self care.

Today is the day I let go of the embarrassment and put myself out there long enough to tell this story to completion.

Today is the day I tell you how to prevent Lyme Disease. Sharing this life passion of prevention without giving up your fire and grit is a story I am willing to tell.

Today is the day I share with you the amazing resources that have changed my life.

THE FIGHT

This is the part of my story where the ominous music slowly fades into the beginning notes of Eye of the Tiger. Look, if Eye of the Tiger doesn’t insinuate that there’s about to be a major shift in energy and positivity, then we can’t be friends.

I’ll be honest, I never saw a pump-up song montage in my future. The cards were dealt, and I reluctantly accepted my fate. Well, that’s what I had told myself. More or less, “never give up.”

After moving home from college, slipping into a horrible depression, and letting go of every single childhood dream, the fight for fresh air seemed out of reach.

I was sick and tired of being sick and tired.

How could someone that lives a life filled with love, compassion, companionship, and so much more, hit rock bottom? Let me tell you, it’s possible.

Would you believe me if I told you Mother Nature saved my life?

Mother Nature’s spirit inspired me to seek professional help for my depression, return to the scene of the crime, face my fear of the outdoors, and soak in as much fresh air as humanly possible.

I never would have thought that the soul of Mother Nature, a daily antidepressant, and a pair of hiking boots would have been the answer; but I’ve been proven wrong before.

As the depression became a controlled memory, my rediscovered passion for nature, hiking, and traveling became overwhelmingly inspirational.

Look, it wasn’t easy letting go of the fears. I don’t know if I'll ever look at a woody path or wandering deer without getting a slight prickle of nervousness. Lyme Disease is a part of who I am. Nature is a part of who I am. Why should I have to pick one? Just because I convinced myself to stay inside and live in fear, doesn’t mean it had to last forever.

With the right help, education, passion, and resources, anyone can grow; and that’s what I did.

Yes, I understand that I’m not a medical professional and that my path back to light isn’t for everyone. Yes, I understand that Mother Nature isn’t a real person. Yes, I understand that each person will undergo a different experience when battling a life-changing illness. But this is my truth.

PREVENTION & RESOURCES

Instead of telling you how to live your life, I will share with you my trusted tips in preventing a run in with an infectious tick.

I start by pre-treating my clothes and gear with permethrin spray. This stuff is NO JOKE! Sawyer Products, Inc. makes a Permethrin Insect Repellent that is safe to apply on your clothing and all outdoor recreation gear. Not only is this particular repellent odorless, but it’s also safe to use on your pets. You’re not going to catch me hitting any type of trail or campground without a bottle of this repellent along with some organic peppermint oil for backup.

When leaving the house, even for a short trip to the woods, I always make sure to have head protection. Tying back my hair and tossing on a hat is just an easy way I can prevent a run in with a sneaky little tick.

Next are the obvious tips: always tuck your pants into your socks, don’t wear sandals, wear weather appropriate layers that cover easy to burrow creases, never wander off the trails, and just be present.

These basic tips can work wonders when hitting the outdoors for any type of adventure.

I wouldn’t be a true millennial if I didn’t suggest you hit the books and internet for reputation worthy resources. Yes, Pinterest is fabulous for charts and fun graphics, but when researching topics as important and Lyme Disease, I would stick to the credited sources.

The Johns Hopkins Lyme Disease Center website is filled with statistics, facts, and important information on this crippling disease. Although I am not currently dealing with Lyme symptoms, I still constantly check to educate myself on recent studies, date, and statistics.

It’s resources like these that inspire me to share my story. They inspire me to promote self care. Seeking help for mental illness isn’t ANYTHING to be ashamed of. If anything, it just makes you a stronger person. Understanding that you might need an extra boost in order to take steps towards your best life is the passion I want to share with the world.

I will never stop learning, seeking advances in treatment, and promoting the true beauty that is fresh air.

If I could give any advice to someone that lives with chronic Lyme disease and/or has a fear of the unknown, what would it be? My answer would be to weather out the storm. I know it can be impossible to see, but the sun always shines after the worst storms. Try your best to remember that good comes with the bad, but we might not allow ourselves to see it clearly. Despite all the giant horse pills, 1 A.M. trips to get PET scans, and extreme bouts of fatigue, please remember you’re not alone.

This version of my story remains at surface level. My battle and journey continue to live inside me and inspire me every single day to share my struggles, highs, lows, and the overcoming of difficult obstacles.