Recently, I was asked to describe how Lyme Disease has changed my life.
Originally, the words that I used to try to answer this question reeked of pain.
Truthfully, yes, this disease has broken me in ways I never thought possible. But I can’t go there. Going there would only be a setback. If you are this sick, the slightest bit of negative energy can really mess with your healing process.
When I was amid four different diagnoses, I received some advice that continues to stick with me through this endless storm:
“That's what defines you— how you deal with it. You get no points for wallowing.”
Though it’s just a quote, the impact it had on me was monumental. I didn’t believe it at first, but I’ve come to find that you really DO need a positive attitude to get through something this life-altering. No, I’m not saying that you should “find the bright side” of everything. I’m a firm believer in letting someone find positivity on their own, instead of forcing them to look for it. Forcing someone to hunt for the “bright side” is a sure-fire way to send someone right down bitter lane.
Until you find something that keeps you smiling, try not to wallow. I’m not saying that you should put on a brave face all the time (that would be impossible). It’s okay to embrace how you feel in the moment. If you need to be sad, be sad. If you need to be angry, go for it. Yell, cry, throw something. Do whatever you need to do. Just remember, after the hurricane of your emotions passes and the dust settles, you must come back to reality because you need to keep fighting.
I am not the girl that I used to be (and I’m learning to be ok with that). Truthfully, that girl vanished on February 20th, 2016. That was the day I hopped on this roller coaster. Old Joanne - she would have listened to the doctors who told her that she was “fine.” In fact, back in 2013 when she had vertigo and ear pain for the first time, she did believe the doctor. As promised by her physician, after a few short days, it went away. Her biggest mistake was that she never questioned how a twenty-something year old, who never experienced equilibrium issues in her life, suddenly developed vertigo. She also never questioned why odd health ailments continued to happen to her over the next few years.
No. That Joanne is long gone.
New Joanne— well, I don’t have enough adjectives for her yet. In fact, I’m still getting to know her. The first words that come to mind are persistent and resilient. She is now her own advocate and has no qualms about questioning doctors or standing up for herself.
I am continuing to develop into a person of incredible strength. For the longest time, I kept my story to myself. I hid every symptom and every setback because I never wanted to be seen as “the sick girl.”
Let’s be real here, I am the sick girl.
I am sick now, but I will not be sick forever. I am happy to report that I am no longer ashamed to admit that I am fighting an illness. When I first became ill, I watched my body and mind deteriorate. I looked weak, I felt weak and I began to think that I was actually weak.
Eventually, I acknowledged that I was beating myself up. My thoughts about myself verses the reality of the situation were completely different animals. I can now say with confidence that when I look my weakest it just means that I am fighting my hardest.
I am not weak. I am one hell of a warrior, and you are too.
Early on, I noticed that Lyme Disease had a funny way of consuming every moment of my day (physically and mentally). When the pain caused by Lyme wasn’t tugging at my last nerve, I’d find myself spending my spare time Googling one of the following topics;
1) Health Care & Lyme politics
2) Finding ways & remedies to relieve my latest Herx
3) Finding new foods or supplements that will help rid my body of spirochetes & toxins
While obsessing over Lyme, I noticed that the lifestyle of being in constant “fight mode” was causing me to become bitter, hopeless, and overwhelmed. It dawned on me that I was literally giving Lyme Disease the last ounce of energy that it hadn’t already claimed, and that was not acceptable. I needed to find a healthier way to educate myself (without taking away the little light that I had).
In lieu of allowing Lyme Disease to continue consuming my brain, like the way it had with my body, I created hunting4spoons, an Etsy shop that sells my #whenlifegivesyoulyme Make Margaritas tee-shirt. I started this business to help raise funds for my treatment while promoting Lyme Disease Awareness.
To give you a little background about my business, the “Make Margaritas” theory began by accident. When I was finally diagnosed with Lyme Disease, I decided to participate Instagram’s 100 Happy Day challenge. I figured it would be a great way to keep my spirits up during treatment. As a Lyme newbie, I had high hopes that my post on the 100th day would display a victory photo of me running in my favorite 5k. Well, around day 90 I was still bound to my couch for the most of the day. I realized that the only race that I was running in was the one against my immune system. I decided then that the last 5 days of the challenge would be devoted to Lyme Disease Awareness. I shielded everyone from the ugly face of this disease, up until day 95. Those 5 days had given me a real outlet to express how hard my struggle was. After each post, I was astonished by the reactions of those around me. People were learning something from my posts! It felt great.
Fast-forward two months later, I found myself at a treatment standstill. To make matters worse, I had also been diagnosed with Small Intestinal Bacterial Overgrowth (SIBO). As if more bacteria in my body wasn’t enough, I also spent the weekend in the ER for extremely low blood pressure.
About a week after I came home from the hospital, I started new medication to eradicate SIBO. This treatment brought me to an uncharted territory of sickness. SIBO is, after all, bacteria that needs to die. So, when I began the antibiotics to eradicate SIBO, I had one hell of a herx. I was on the couch for a week. I felt AWFUL. My body ached. I had terrible brain fog. If I moved my head, the world spun. To top it all off, I was having some of the worst stomach pain I’ve ever experienced.
I think this herx put me at my lowest emotional point. Despite the constant stomach pain that was caused by SIBO, I had a few solid good days before starting the medication for SIBO. When I began herxing, my equilibrium went haywire and my emotions followed suit. I felt like someone just ripped the carpet out from under me.
There I was, on my face (yet again). This time, it was just a little harder not to cry. It was even harder not to be enraged. I decided that the only way to get out of my own head to was to treat myself to a little online retail therapy. After all, I was herxing. I felt like hell, inside and out. I deserved it.
I wanted to find a shirt with my 100 Happy Days mantra, “When Life Gives You Lyme Make Margaritas.”
I couldn’t find a single shirt.
At first, I cried. All I wanted was a shirt with a ridiculous saying to make me smile.
That’s when I saw it, staring me in the face.
My inspirational quote. I kept it on one of my computer’s sticky notes.
“That's what defines you - how you deal with it. You get no points for wallowing.”
I admitted to myself that I was indeed wallowing and the only thing that I was getting was a headache.
It was then that I noticed the figurative crossroad ahead. I could either continue to let this illness get the best of me and cry over a non-existent shirt, or I could DO something productive.
That’s when the idea for the shirt was born.
Filled with energy coming from a new sense of purpose, I got to work on the design. I drew something that I thought resembled a margarita glass and stared at it for a solid hour, trying to figure out what to do with it. That’s when the epiphany came in. I remembered how good it felt to educate people during the 100 Happy Day Challenge. I planned to find a way to make this shirt both educational AND artistic.
Truth of the matter, this disease is AWFUL. It’s unpredictable and scary. It is also very frustrating because people just understand how much damage Lyme Disease can do. My shirt was going to help fix that. The final design features the following;
A large margarita glass is pictured front and center. The inside of the margarita glass holds a list of the common Lyme co-infections. The lime that sits on top of the glass spells out “borreliosis,” (the medical term used for Lyme disease). The syringe going into the glass represents the well-known antibiotic, Rocephin. The bottom of the margarita glass features the root chakra, which represents survival and one’s foundation.
The background boasts my favorite saying, “When life gives you Lyme, make margaritas” in a playful, delicate font. My design for this shirt was born based on my own hopes. I always remind myself to try to find a little light in a dark situation, or as I like to call it, “make margaritas.”
This shirt was not meant to be understood by everyone. People who do not have Lyme may not understand the co-infections inside of the glass; therefore, it is a conversation starter. Conversations lead to questions and questions lead to answers. The result? People become educated. Awareness is spread. THAT was my goal.
I “drew” a mockup of the design, and sent it over to a very dear friend, Scott. Without his incredible drawing talents, this design would have never come to life in the way that I needed it to. I couldn’t be more grateful for the outcome.
The shirt (and my company), in a big way, represents my own struggle with Lyme. I am constantly trying to keep my own Ying and Yang in order. I struggle to keep the light and dark balanced. I started this business to help raise funds for my treatment while promoting Lyme Disease Awareness. It turns out, this venture has given me back some desperately deserved sanity. I have found that my “positivity” is coming from a place that I least expected to find it…. in my own story.
This adventure has not been an easy feat. I am fortunate enough to have a business and marketing background, which made finance planning, vendor selection and start up marketing much easier.
I still found that there have been a few obstacles while building hunting4spoons.
For example, I am new to retail, so I had a lot of research to do. Thankfully, I am friends with a few people in the field who gave me some great advice and resources.
I have come to find that my biggest struggle was (and is) myself. I constantly think that I have the mental stamina of “old Joanne.” I didn’t consider that I don’t feel well more than I’d like to admit. Because of my own oversight, the setup of my online shop took much longer than anticipated. Fortunately, after the setup was complete, the “heavy lifting” is over. Now, my job is to market and keep track of sales, which is something that I have programs for. One of the best things about this business is the easy maintenance. I can handle pretty much everything from my phone while I’m in bed, (which is what I needed).
I am still learning the ins and outs of the industry. I’m sure that there will be many more bumps in the road. I am learning to give myself a break and not stress about the big picture. I am taking everything one day at a time.
As a Lymie, I have no other choice than to take everything one day at a time.
The feedback that I have received thus far has been nothing short of incredible. I am truly touched to know that the Lyme community loves the #whenlifegivesyoulyme concept. This concept has given me some much-needed strength and has brought me a whole new set of hope.
I hope that my shirt and its concept can be the hand that helps someone stand back up during their worst herx. That’s what it did for me. This shirt, (along with the new journey it is leading me on) is exactly what I needed to fight harder. I want to give this same gift to every single person fighting this battle.
When I was first diagnosed with Lyme, I swore to myself that I wouldn’t change. I associated “change” with cynicism and negativity. I feared the emotional turmoil that this disease would leave me in. Despite my best efforts to remain “old Joanne,” I’ve learned that When Life Gives You Lyme you will change. It’s impossible not to. Something of this magnitude will never leave a person the same as they were before. Though you may not have control over how this disease changes your life, you will have control over how you react to this change.
Currently, my personal Lyme saga continues. I will be starting a different treatment plan soon and I have high hopes that my new LLMD will be the right doctor for me. I am trying to prepare for (and not obsess over) whatever comes next. In the meantime, I am happy to report that I am no longer associating change with negativity, nor am I fighting the changes that are coming my way. Lyme Disease may have changed me, but it hasn’t gotten the best of me. I may be temporarily captured, but I refuse to become a prisoner of the Lyme war. I will escape. In the meantime, I am hunting for some spoons to get me through the day.