One of my favorite places in Chicago (and maybe the world) is Will’s Northwoods Inn, a Wisconsin bar that’s basically like a log cabin, full of Packers (I’m a die-hard Packers fan) and Badgers memorabilia, fish, deer antlers, stuffed wild animals, etc. Will’s is know as “A little bit of God’s country in the heart of south Lakeview”…and for those of you who somehow don’t know this, Wisconsin is often referred to as God’s country. Yes, we have been blessed with the legendary Packers and the Badgers, cheese curds and beer, and beautiful wilderness perfect for hunting, fishing, camping, and hiking. We also have the curse of LYME DISEASE. The CDC recently upped infection rates in the US 10-fold for 2012, from 30,000 to 300,000 new cases EACH YEAR! Lyme has been found in every state, but the Midwest and the Northeast are hotbeds for it.
Each year, Will’s has this street festival called Musky Fest. I’ve never made it to the festival before, but apparently there are like 5 bands and it’s quite the celebration to end the summer. I was recently at Will’s and the bartenders asked me if I was interested in running for Musky Queen (as they have in past years). I always thought it sounded like a fun, ridiculous contest (and I’m all about that sort of thing), but I never really had a reason to do it. Well, now I have my reason- I’m running for Musky Queen to increase Lyme awareness…and I have absolutely no idea what I’ve gotten myself into.
Most of us hear about Lyme Disease growing up in the Midwest (especially in Wisconsin), but many people, including doctors, know little or nothing about the disease. A large majority of Will’s patrons are from Wisconsin and are the outdoorsy type, (hunters, fishers, campers, etc., and yes, I’m totally stereotyping), which makes them a very at-risk population…there are probably many who have Lyme but don’t know it yet (it can lay dormant in the body for years or even decades), or have loved ones who do.
I honestly hope I don’t encounter even one person who can relate to my story or has similar symptoms, but the truth of the matter is that I probably will. Regardless, I want people to learn about this disease so they know how to take the proper precautions, as well as what to do if they someday find themselves searching for answers and getting nowhere. I would never wish this disease upon anyone, and that’s why I feel I need to do whatever I can to educate people about it, even if it’s through a silly Musky Queen competition.
Lyme Disease is a very complex, multi-systemic, degenerative disease that can attack every single part of your body, and yes, IT CAN KILL YOU. Most doctors will not admit this, or maybe they just don’t know the truth. It is shocking how little most doctors know about Lyme Disease- even good doctors with the best of intentions. Lyme can cause things like organ failure, cardiac arrest, etc., but is almost never listed as the cause of death on a death certificate…the organ failure or the cardiac arrest or whatever ultimately killed the person is listed as the cause, but it was really the result of Lyme Disease. This is extremely maddening to me and the entire Lyme community. Furthermore, a lot of Lyme patients end up committing suicide, and this is for many reasons: they are living in constant agony, they feel they have become a burden to loved ones, they are unable to care for themselves, they are ridiculed and called crazy by doctors, people don’t believe they are truly suffering as much as they are (as many of the symptoms are invisible), they have lost friends and family members due to the fact that many don’t understand the disease or just don’t want to deal with a chronically ill person, and the list goes on…
If you happen to have the great misfortune of contract Lyme, chances are a handful of co-infections were also invited to the party, which further complicates treatment. You quickly learn that you are caught in the middle of ‘Lyme Wars’ because Lyme Disease is one of the most complicated and most controversial diseases in history, and there is no clear path back to health. There are very extreme and contradictory view points on treatment protocols, and some are incredibly dangerous and can even cause death…but people subject themselves to these treatments because they are so desperately fighting for their lives.
There is also no insurance coverage for ‘people like us’ beyond the 30 day course of antibiotics, which is not nearly enough to eradicate Late Stage Lyme and co. from your body. There’s this saying amongst us Lymies: “You don’t get it until you get it,” meaning that you cannot fathom the horrors of Lyme Disease and everything encompassing it until you contract it and are fighting for your life- Every. Single. Day. But I don’t want you to get it. I don’t want you or anyone else to have to understand this awful disease. If it is caught soon enough and treated right away, you’ll probably be ok, but 50% of people don’t get the bulls-eye rash and many don’t develop symptoms until years later.
I want to give other Lymie’s hope. I want to be part of the reason they don’t give up. I want them to hear my story and realize that although it may be a long and sometimes miserable road, they can fight their way into remission (there is no known cure for Late-Stage Neurological Lyme Disease) and lead a normal, healthy life again. I’d be lying if I said there haven’t been times when I’ve felt like giving up, but I haven’t, and I’m not going to.
I hope that reading this blog post makes you angry and also scares you enough that you take this disease seriously and protect yourself in every way you can. I don’t want this to happen to you, but if it has already or does, I want you to know what to do. In the end, this isn’t about me being crowned Musky Queen…although that would be so incredibly awesome (and I might cry if I lose, haha). I just want to speak the truth.
So if you are in Chicago this Saturday, September 7th, please come down to Will’s and cast some votes for me:) The fest goes from 10am-10pm (votes are counted at 9:15pm). I promise you’ll have a blast, so I really hope to see you there!