Hi! Welcome to my world!
My name is Shawn and I am a Lymie. Ha ha – sounds like it’s an addiction, right? Well, right now it is definitely taking a toll on my world. But it isn’t the thing that defines me. I am so much more. I am a wife, a mom, a sister, a daughter, an aunt, and a friend. I like to spend time with my family, to play guitar and kayak. I enjoy camping and walking on the beach. I live in a small town in Northern California in an old 1800’s home with my husband, my kids, our horses, dogs, and cat. I believe in God and am thankful for all He has given us. As you read through the pages of my blog, remember that while Lyme is definitely an important part of my life, it’s not who I am.
My illness started in 2006 when I developed a serious respiratory infection and seemingly unrelated back pain. Since then I have had multiple rounds of bronchitis (and occasional pneumonia), ongoing low back pain, neck pain, and fatigue. In 2012, I developed gastrointestinal issues that have forced dietary changes. In early 2013, I took penicillin for strep throat – 3 days later, I went to urgent care with severe neck pain…they sent me to the ER with potential meningitis. It wasn’t meningitis. I soon began developing rashes (different kinds in different places), and in July, I became fairly well bedridden due to pain and numbness. When I say pain, I mean pain that is so bad that narcotics barely touch it. Different types of pain – low back pain that keeps me from walking, neck and head pain that won’t let me sit up, migrating joint pain (ankles, knees, wrists, elbows, hands, feet), fascial pain that circles my eyes and runs along my jaw, chest pain so bad that I spent 2 days in the hospital running every heart test possible only to be sent home with, wait for it, chest pain. I can’t explain to you how unbelievable this illness is.
After years of doctor visits and medicines that don’t work, after tons of vials of blood were sucked from my arm only to show that I’m within the normal limits of just about every possible test, after at least 5 different lyme blood tests came back negative, I now have one that says “positive”. That’s right – I have lyme disease. And have had it since 2006. That’s 8 years. 8 years of an undiagnosed illness that could have been eradicated from my body with early detection and treatment.
How can this happen in the United States of America? How is it that doctors can know so much about this disease but misdiagnose me over and over – for 8 years? I’ll tell you how – they follow the guidelines as written by the CDC – they don’t just follow those guidelines, they abide by them as gospel truth. The problem: the CDC is wrong.
I am writing this blog for 2 reasons:
- to educate people about the truths of lyme disease and the CDCs false representation that existing testing and treatment is sufficient
- to give hope to others who are fighting an unknown illness
- to journal my experience with lyme disease
If you’re sick and you’re reading this – be encouraged! Life may be changed – but God has a purpose and a plan. And He always is good.