Realizing you have Lyme Disease: Caroline's story

August 01, 2016

Recently, we had the chance to hear Caroline's story regarding realizing that she had Lyme Disease and needing to get a PICC line. Her ability to live her life with her PICC line is so inspiring and something we wanted to share with our community. She has a fascinating story and we're thrilled to be able to share her story here: 

I got sick in 1998, when I was in high school, and my doctors didn’t know why. I got bumped from one specialist to the next, collecting diagnoses and treatments that were at best ineffective, and at worst landed me in the emergency room over a range of side effects. This went on until 2006.

A neurologist in Pittsburgh asked me if I’d ever had a tick on me, and I laughed. I grew up very near to the woods, and tick checks were common when coming back into the house. Still, we missed one. I’d had Lyme Disease for the past eight years. 

When caught and treated early, Lyme is generally not much of a problem. Most people in that category will take a course of antibiotics, then go back to living their lives like it never happened. I wasn’t in that category. Because I’d gone untreated for so long, I’d developed neurological complications to go along with my joint pain. Which meant that my best option was a PICC line.

(Side note, I wrote a blog post with advice on getting one:

I was not excited. It’s a scary thing - not so much the procedure itself (it wasn’t as bad as I’d anticipated, and they let me watch the fluoroscope), but it was easier to convince myself that I wasn’t THAT sick before I had a tube that fed medication straight to my heart. And then there’s dealing with the line. Keeping it covered at work (I was a veterinary technician at the time). Showering with it. Corralling all of my tubing in a comfortable way - I’d had the PowerPICC with two ends, and since they both need to be flushed with saline, I had two extension tubes as well. It was a lot.

Fortunately, I made friends in similar situations, and they helped me out. I moved from using saran wrap to shower to another product that was infinitely easier. I stopped using the itchy surgical netting provided after my mom sewed me a few covers out of a soft jersey fabric. Small comfort items can make a huge difference in your day to day life with a PICC line. I unfortunately didn’t discover Care+Wear until a few years after I had what I hope was my last PICC line placed, but after having six PICC lines in eight years, I’ve learned a whole lot about managing a line while still living my life. These bands are amazing, and their donation program is such a kindness. I’ve shot five weddings, photographed three festivals, flown to Spain, worked three different jobs and continued freelancing, trained a puppy, road tripped with friends, gone to concerts, and generally carried on about my life, all with a PICC line in. I’ve spent, cumulatively, about a year and a half with one in. You’d be amazed what you can get used to. And innovations from companies like Care+Wear make it easier. 

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