I began this blog when I was spending 24 hours a day in bed because of Lyme and other infections I got from tick bites. I was infected in the backyard of my Northern Virginia home, then re-infected in Southern Maryland where I live now.
My goal is to share what I’ve learned—and what I continue to learn. The Centers for Disease Control and Prevention just updated their number for people infected in the US every year from 300,000 to 500,000.
Do the math: That estimate comes in at 5 million a decade. Now consider this: Those numbers are likely quite low because of misdiagnoses and gross under-reporting (if you don’t know, half of negative test results are wrong with current tests). Some scientists suggest the number could be ten-fold.
Now multiply that across the globe, and you see we’ve got a crisis. The World Health Organization (WHO) calls Lyme a pandemic, though you don’t hear about that, do you?
There’s lots of misinformation out there about Lyme, if you haven’t realized that yet. You ask doctors and they have no answers. You read things online and there are conflicting answers.
I’m not a doctor, but I am someone who knows what it’s like to live with this illness and I’ve learned a thing or two. I’ve endured symptoms ranging from excruciating 24-hour physical pain to severe, Alzheimer’s-like cognitive deficits. I’ve been through job loss twice, a fight for disability, downsizing and moving for financial reasons, and the loss of friendships because it is hard to be friend with someone with a chronic illness.
I’ve also gone from bedridden to getting out in the world again on some better days, and I hope research soon brings a cure so I and countless others can regain a normal life.
I’ve been reading about, researching, and living with Lyme and other tick-borne illnesses for more than a decade. I’m here to share what I know. Looking around on my blog, you’ll find:
- research
- patient stories
- essays
- videos
Whether you are a patient or a caregiver, relative or friend, I hope I can answer some of your questions, or point you to a helpful source.
Or maybe just let you know this: You are not alone.
One of the biggest lessons I’ve learned is “Take care of more than the medical side of things.” Like any other serious chronic illnesses, Lyme can strip away critical, sustaining connections to life around you.
Don’t let it happen.
Remember that you are not Lyme disease. You are still you.
Do your best to hold onto the meaningful people and things that connect you to life and love. That’s why I write about the good things in life, the love I feel from people and pets. We have to focus on the healing there.
Caregivers, family, and friends: You have a critical role to play with your loyalty and support. Bring it on!
Please see the “Categories” button to the right to find the topics that might interest you most. Share your comments, knowledge, stories, humor, love… and help spread the word about the dangers of infections spread by ticks. The right information could easily save a life, or at the very least improve one.
Wishing you good health!
Contact: LifeLoveLyme@gmail.com
Thank you, you help me understand what my twin sister is going through. I wish I could carry some of her pain for her. Since I can’t. . . it means a lot to me to read your posts and get an idea of what I can do to support her.
All you need is that desire to support her, and you’ll find the right sisterly ways to do so. Never underestimate the impact of gestures small and large, including just saying you care and you’re trying to understand. Hope her healing is coming along well.
So sorry to hear that you are going thru this a second time. That is one of my biggest fears.
I see from your blog you are well-informed; just make sure you are super vigilant. Relapse is one word none of us want to hear!
Hey,
I greatly enjoy reading and following your blog, in fact I am nominating you for the Very Inspired Blogger Award. Check out your nomination at http://myjourneythrume.wordpress.com/2013/03/22/a-very-inspiring-blogger-award
Congrats!
Jess
I’m new to the Lyme community, and your newest follower. And fellow Virginian. You, and all the other Lymies are in my thoughts and give me strength every day!