Puck Lyme: Using hockey to face-off against Lyme Disease

Feb 5, 2014

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I generally use this forum as a distraction from my pain. Hockey in general, but the Blackhawks in particular, provides a respite from the frustration and sickness I face. So, my contributions to The Pink Puck are separate. They are a chance to dish on one of my favorite things.

But, the truth is, I have a chronic illness. Based on its symptoms, which range from muscle and joint pain to headaches, frequent nausea, dizziness, and extreme fatigue, doctors thought I had Multiple Sclerosis, Lupus, Chronic Fatigue Syndrome, Rheumatoid Arthritis, and more. I look fine — haggard, in my opinion — but normal to most. I live in pain.

For months, more than two years ago, I saw doctors and specialists in Connecticut and New York City — trying to figure out why I could no longer handle my commutes into the city for work, and on some days, even light and sound. Eventually, after giving up more blood to tests than the Hanson Brothers did to ice, I was diagnosed with Lyme Disease.

Despite my outdoorsy background, the potential of a tick-borne disease hadn’t crossed my mind. I could’ve been infected any time in the past couple years of exploring Connecticut’s beautiful scenery. Because I wasn’t treated immediately, I’m one of the unfortunate but growing number of people with “chronic Lyme,” or Post Lyme Disease Treatment Syndrome, or Lyme Arthritis, and co-infections. A bug, likely the size of a poppy seed, left me with Lyme Disease, and a related infection and parasite.

Since then, I’ve left my beloved TV job in NYC, moved back to the Midwest to be closer to friends and family, had several months with a PICC line and IV antibiotics, sorted more medications and supplements than I could count, relied on my boyfriend for help on stairs, in and out of the bath, with treatments, and much-necessary support. Here’s a radio interview on my experience.

The Center for Disease Control has only recently admitted that their numbers were off by 10 percent, that 300,000 Americans rather than 30,000 have Lyme. They remain stringently attached, however, to old treatment guidelines that insurance companies adhere to–meaning even those of us who work and are insured must pay out of pocket for treatment if we remain sick. The plight of those with persistent Lyme is shown in the documentary Under our Skin on Hulu, and in this shorter project.

As I’ve tried to chronicle in my personal blog, aboutdarnlyme.blogspot.com, I work full time, take on freelance when I can, and still have gone through my savings and cashed out my retirement to cover medical expenses.

To deal with IV treatments, and now very painful antibiotic injections, I’ve used the mostly pleasant distraction of Blackhawks hockey. I even had a custom “Blackhawks sock” cover made for the PICC line in my arm. Hockey has helped me get through this mentally.

And now, so that I can pay the pile of bills I’ve accumulated, and continue treatment, my loved ones are hoping hockey can help me again.

They’re hosting the Face-off Against Lyme Disease benefit Feb. 22 from 4:30-7 p.m. at my hometown ice rink, Ice Valley Centre, 1601 River Road, Kankakee, IL. The suggested donation for admission is $10 per person or $25 for families with children.

There will be food, drinks, hockey scrimmages, and a skills competition as well as face painting for children.

Raffle and silent auction prizes include gift cards for Icewarehouse.com, restaurants.com, Starbucks, and iTunes; tickets to the Chicago Wolves and Rockford IceHogs; a gemstone; a Kindle Fire; spa, Tupperware, wine, hair, and beauty baskets; massage certificates; autographed Chicago Bear memorabilia; and more.

We’re looking for players (high school and older), referees, participants, donors, and attendees.

We’re also selling a Puck Lyme shirt (mock-up) as a fundraiser.