Living Mighty Well

How My Business Helped My (and others') Lyme Disease

The journey nearly killed me before the disease could; daily I searched for purpose and happiness in the oddest of places. I was feeling more at home than ever in a hospital room, in Madison, Wisconsin, than at home in my bed, it seemed safe, I didn’t feel so alone. It began with a tick bite in Northern Wisconsin, July 3rd, 2010.

The next day, I had a sore throat and a really bad neck ache. I never really heard of Lyme Disease before this, so I thought I had the flu… until routinely, every 4 weeks, I would get sick, go to the doctor and get sent home with NOTHING wrong.

Then, my fingers and wrists started to ache and swell… then I started having uncontrollable muscle movements… then I started forgetting the names of common objects. I kept going back to the doctors, convinced something was wrong. Now October of 2010, I am losing my mind, memory, abilities to be awake and alert, still trying to work, but I knew my time was running out, you somehow KNOW when you’re dying- there’s an internal alert deep in your gut that tells you to keep searching for anyone to listen.

I finally got fed up with the internal medicine clinic at the University of Wisconsin, and escalated my case to a specialist who then, gave me a battery of tests- all yielding positive results for Lyme Disease, Bartonella, and Babeosis.

They called me with the results, keep in mind, this was 2010: “Miss Baden, we have some great news: you tested positive for Lyme Disease” – me: “lemme google that really fast,” Nurse on the phone: “it’s a tricky one to catch but easy to treat, you’re going to be just fine.”

I thought the nightmare was over, but little did I know, it had only begun.

I finished my 30 days of antibiotics and woke up the next day with a sore throat. This had to be a coincidence, I thought to myself, by the end of the day, my joints ached so badly, I couldn’t walk and had to leave work.

I called my doctor and said that I thought I needed to go back on medicine because my symptoms came back as soon as I stopped taking meds!

She said it sounded like something called “post-lyme disease syndrome” which some people get after lyme, but she assured me, it would go away over time.

So, I waited… and sat, and kept getting sicker.. and finally was at the bank withdrawling money- they asked me my mothers maiden name, and I couldn’t recall it. I knew at that moment, something was just not right.

I made an appointment with the specialist again. She said she was going to look into other diseases like ALS, MS, and Parkinson’s. Conclusion: I had “some type of infection that was ruining my immune system” but it definitely was not lyme, they said. They sent me home, without any medicine, without any next steps, without any help. 

I knew this couldn’t be it for me. I had too much to accomplish yet, I just finished college, I hadn’t even had time to pay loans off yet… So I started to google.

The more I googled, the more I found a community of people, exactly like me: scared, confused, and needing help.

I found ILADS and got connected with Judith, a patient advocate, who saved my life. She connected me with my new doctor- a Lyme Literate doctor who then did the correct tests on me to see what I had including a spinal tap and found it in my spinal fluid.

I was immediately put on an IV PICC line of antibiotics- in hopes of getting a port placed that next week. The doctor placing my port ending up collapsing both of my lungs and I woke up in the ICU at the University of Wisconsin, Heart and Lungs unit unable to breathe. The chief of surgery brought in the infectious disease unit to talk to me about my personal decisions regarding my “dangerous path to treat my post lyme syndrome” – I begged him to leave it alone, but alas, I was not allowed my IV medicine, and my doctor was reported to the Wisconsin Board of Health for treating patients under dangerous conditions.

I had never felt more alone. Not only was I alone in the ICU unable to take a full breath, but I was in a hospital asking for treatment and no one believed me or even wanted to help. It’s like I was standing in the middle of the highway screaming for help, and no one stopped to ask why. I cannot explain the depth of sadness I had over the course of the 5 days spent in the hospital.

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Getting back on track was extremely hard but ILADS helped me find a new doctor to follow the same protocol that I was on prior to these incidents. I began my journey of IV treatment, 8 hours a day, for 2 years. I began lighting candles when I infused because my mom loves candles, and it reminded me of home. So whenever I was infusing, it became routine to light a candle and zen out while I got sick… and waited out the Herxes.

 

After 2 years of IV treatments, 5 PICC lines, 28 doctors, my LLMD found a program in Los Angeles that she thought would benefit me- help me kick this last bit of residual pain. Having never been to California, I picked up and moved my life in hopes of feeling some type of relief… anything. 

Moving to Los Angeles (specifically WEHO) was SO EXPENSIVE!!! I burned candles, but they were really overpriced.. so I decided to take a class to learn how to make my own, but I also wanted to make friends, since I had 0 people I knew in California at the time.

 

Flores lane was kind of birthed out of a hilarious accident -I started experimenting with scents and sending them out for friends and family to test—and long story short there became a demand for my candles via friends, friends of friends, etc, so I opened my etsy shop and did my first market at the Melrose Trading Post.

The first weekend at the Melrose trading post, I sold out of all of my candles that day- and I thought, maybe I’m onto something here. Made a ton of candles that week and went back to the same place and sold out again- but this time, I had repeat customers telling me how amazing the quality was, and which scents they liked, and prefer.. fast forward 6 months and I decided to rebrand the candles entirely into something with a more custom feeling for each person – a luxurious candle that brings the vibe you want to your space. This birthed location candles – flores lane how you see it today!

We did our first pop up with Space 15twenty in Hollywood and gifted the girls candles. They sent them off to corporate, we got a call from urban outfitters that next week with a partnership offer to create a New York City Line – from this opportunity has come so many others!

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I created the Lyme Disease candle with the forecast: You are never alone, because we all feel so damn alone all the time. Chronic illness, specifically lyme disease, isn’t a “normal” disease, so it’s automatically placed into the “crazy” category;  Doctors, dates, and people all ensure you know you’re not normal- my candle is a little light in the darkness to help people feel not so alone.

I also am very outspoken online, Instagram, and everywhere- to ensure if anyone is ever in the position like I was, where they were googling their fate, they can come across me, my story, my name, my company, anything to get them to me, so I can guide them to the resources they need.

 

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