Lyme Life- Reflections On Lyme One Year In

It's Lyme Disease awareness month so it's naturally got me thinking and reflecting on the journey of the past year...or perhaps years if I'm really honest with myself. It was this time last year I rolled up my sleeves and began the battle. If you would've pulled back the curtains and given me a glimpse into the narrative of how my life would unfold I don't think I could've possibly fathomed or comprehend it all. The weight of it would have crippled and paralyzed me. I've concluded that God is gracious to withhold foreknowledge of our future. Take comfort in that. I occasionally meet an inquiring mind that wants to know more about Lyme Disease and what my symptoms are and how I got it. I think out of all the diseases out there Lyme has to be one of the most misunderstood, misdiagnosed, and highly controversial diseases.

Husband: "Of course you would come down with some random disease like this...".

Me: "What can I say?!….I'm talented! I've also managed to keep 4 tiny humans alive at the same time." You're welcome!

The "What it's like to have Lyme Disease" question is a valid question! There's not much information out there and the information that is out there is often inaccurate and lacking (like my current cognitive function). According to the outdated CDC standards Lyme Disease is hard to catch and easy to treat. Yet in the year 2018 alone there were over 329,000 confirmed cases reported by the CDC. The problem with testing for Lyme Disease is that it is highly innacurate….so inaccurate that you'd be better off betting your money on a lottery ticket with your dog b-day and scoring big (kidding guys....but seriously it's bad!) These tests fail to diagnose 50-75% of people... tests are flawed and people know it. Patients go undiagnosed for years and many are diagnosed based on clinical manifestations. So take this 329,000 number reported and the above percentage mentioned and do the math! I would but.....brain fog's got me all ….

People: So you get tired a lot, right?

Me: Yeah....like combine all the fatigue of all four of my pregnancies together. Then add a generous dollop of the most horrendous pain you've ever felt in areas of your body you didn't even know had pain receptors, excruciating heart pain and palpitations, brain fog, nerves on fire, bones throbbing, ears ringing, muscles twitching, weird rashes, weight fluctuations, light headedness, swollen glands, forgetfulness, pelvic pain, light and noise sensitives, teeth pain, headaches, tingling hands and feet......and because my billions of spirochetes are insecure type A overachievers they like to do it all and not let me forget how awesome they are ALL the time ------> # insomnia.

Truth be told I hate going through that list. That list is a painful reminder of bad days that turned into bad nights that turned into...months. It's days of desperately pouring my heart out to God begging for any sliver of relief from the torments of pain. It's the clenched fists raised up "Why me God?!" and "Why this!?" and "Why won't you take this all away...You are able". It's a place you don't want to be....cold, dark, clouded and extremely lonely. Fear ridden, hopeless, and ending every night and beginning every morning with wet cheeks and a dwindling bank account. Lyme doesn't stand alone with the aforementioned symptoms above. We are not bodies that happen to have souls but rather souls that happen to be living inside of bodies. These bodies break, run down, bleed, bruise, and at some point fail us. The emotional aspects of battling Lyme are almost as hard (sometimes more) than the physical aspects of it. That my friends is not something your physician will not warn you about. That my friends is unknown and unchartered territory. It.is.hard.

Lyme is lonely. They don't tell you that when they tell you about your new life with your billions of spirochete residents who are setting up house in you and failing to pay rent. I don't mean friendless-kind-of lonely (although that's a whole other subject for another day) but I'm talking about the loneliness that comes when you realize you have a disease that few physicians formally acknowledge and even fewer treat. That in order to find someone (anyone living and breathing with a pulse) that can look beyond the scope of conventional medical practices, where physicians prefer you to fit into their tidy little boxes, and address this destructive disease you'll have to look up websites, make connections with other Lyme patients, and request names of doctors (that don't want their names published for fear of repercussions). It's as if your unknowingly entering into this secretive underground world (where you feel like your doing some kind of questionable activity?!) where Lyme Literate doctors acknowledge and diagnose without hesitation but want you to keep it on the down low. Two words -------> Insurance Companies. Two more -------> Shame on you....ok that was three because we know Lyme aint free (annnnnd clearly it's getting late by mad/bad Lyme rhymes). I digress...my cat is wondering where I'm going with this and so am I.

Lyme is misunderstood. Want to know a great way to make your physician uncomfortable really fast? Mention Lyme disease and watch as they go from calm, cool, and collected to annoyed, irritated, and perhaps a snicker or two in response. You quickly realize in these moments that you're alone. Like, I feel like I'm dying and my body is screaming at me inside all kinds of profanities and the best I've got is Dr. A over here telling me that I should cut out carbs because "eating carbs makes you feel bad and we all feel better when we cut out carbs". True story. Really happened. (Writing this while eating carbs and not sad about it...pass the chips). It's the third infectious disease doctor standing if front of you laughing when you mention Lyme disease and insisting it's impossible while in the same breath acknowledging that physicians don't have everything figured out yet and yet still some things need more research (news flash-----> the research is undeniably there). These are just a few and I'm leaving out others because I truly believe there are well meaning and caring doctors out there that wanted to help me but lacked the knowledge and experience to do so. And you know what? It's ok...I have chosen to forgive each one of them. At the same time, and in all honesty, to say I don't still occasionally struggle with animosity that creeps back in would be a lie. (If you mention you're a doctor in my presence I won't be responsible for the foaming at the sides of my mouth and random twitching....kidding guys. Doctor's are cool.) But really I'm just an average human trying to reassemble together the puzzle pieces that life that was shattered and trust that was broken from a medical establishment I unassumingly thought was infallible. There's a few puzzle pieces still missing guys....along with some brain cells my spirochetes hijacked. Be patient.

Lyme is a thief. Slowly and stealthily it steals from your life your energy, your abilities, your confidence (more on that in a moment). It's making calculated decisions with the limited energy you posses that requires you to pick and choose what you can and cannot do. Decisions, Decisions.....there simply isn't enough energy to both grocery shop and cook dinner. Even enjoyable things like talks and visits with friends go on to look like several hours resting. Lyme steals your confidence....the care free consciousness that we all possess carries with us until we either get that dreaded phone call or realize well into our thirties we can't binge on junk food, stay up all night, and expect that our bodies will forgive all the toxin bombs and stress we threw at it. But even when we do push the limits we expect our bodies to reboot and rebound waking up looking all awesome. There is still a sense of confidence that resonates within that is the platform we rely upon allowing us to enjoy our days with a carefree vibe that we skip to the beat of. Living in a body with Lyme disease quickly strips away this security blanket and the body you once trusted become a body you suddenly don't know (and sometimes don't even recognize). You miss that body you could rely on.

Lyme is life changing. O.k. well, obviously it's life changing on many scales....but before you call me Captain Obvious and skim down to the next paragraph hear me out. It's a little like cruising along and then jerking the wheel down a dark narrow alley. You hear your google maps chime in... (recalculating), and you feel confident for a few until you make a hard left to avoid traffic (recalculating), then another to avoid an accident (recalculating). You get the point. It takes you off the path of your life entirely and makes you more a passenger rather than the driver. An observer rather than a participant.....you think a lot and ponder a lot and apparently blog about it all a lot too (still processing the fact that I have a blog... you guys, I have a blog. How weird is that?!) Within the last year and a half of my life not only has my health taken an entirely different path but my personal goals, my passions, and my future are all headed in a completely new direction (hopefully on cruise control with the top down from here on out).

Lyme is a roller coaster. You pay money and wait a ridiculous amount of time to see a decent doctor. You strap yourself in all nice and tight and start your new meds and you're feeling alright. You're off to a slow but steady start and feel like this might not be as bad as you had previously thought. You head up the track with much anticipated relief and progress as you peak over the top (is this what it feels like to be normal you ask yourself?). But then click, click, click the roller coaster takes a jerk and a turn. You're headed downhill fast. You don't know which way is up and which is down, you just lost your lunch, your phone, and every nickel and dime in your wallet (what.just.happened.) Through the twists and turns you question every decision you've made up to this point and wonder when this roller coaster will end. You survived the ride and you feel a deep sense of accomplishment but simultaneously vow you'll never willingly repeat the insanity of it all again.

Lyme is transformative. I would be remiss to only focus on the hardships and the adversities of this disease without taking a moment to be mindful of the ways it changes hearts and souls forevermore.“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”~ Douglas Adams. I don't think it is possible to survive the afflictions and adversity of Lyme disease and not have it transform you into another person altogether. I woke up one day and didn't recognize myself anymore. I was all together different. I distinctly remember looking at myself through the tears of sorrow one rainy day wondering where the old me had gone. I didn't know this person staring back at me. There was a broken soul there that was slowly emerging and that I was getting acquainted with this new me. Yes, there are deep emotional scars, physical impairments, and new routines that go along with it all but beneath the surface I'm convinced there is a beautiful metamorphosis taking place altogether. Underneath those profound scars emerge brave souls that have waged war and survived an unforgettable battle. There is a keen and deep sense of truly knowing and appreciating this new you that you've waded through deep waters to attain. You are getting acquainted with the new you...battered and beaten down inside but stronger and more resilient than ever....“Today you are You, that is truer than true. There is no one alive who is Youer than You.” ~ Dr. Seuss

This emergence is a beautiful by product of trials and tribulations. In it lies a better understanding of the beauty of life in which every small victory, every joy, and every.single.moment is treasured. I harbor a keen sense that my body is frail (and you my friend are no different) which leads to a profound sense of gratefulness for the things that do in fact happen to be going right. The sorrow that accompanies relationships fading away is replaced with other beautiful and caring souls that come along to give way for renewal. The frustration for the medical community turns into heartfelt prayers for them and great appreciation for the ones that fight for us every day. The heart that breaks mends together in such a way that it now cradles greater love, compassion, and fullness than the one previously possessed. Beauty comes from ashes.

Lyme destroys lives but God sustains them. Lyme shatters dreams but God reshapes them. Lyme casts a far reaching net over the confines of its boundaries but God shows us there are no boundaries that His sustaining love and care cannot reach. Lyme is lonely but God is near. Lyme is a thief but that void gives room for new beginnings. For "God is within her, she will not fall; God will help her at break of day" ~Psalm 45:5.

Want to learn more about Lyme Disease? Looking for a Lyme Literate Physician near you? Please go to www.ilads.org

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