You know Christina as the Lady of Lyme. She writes a well-known blog in the Lyme community and is a tireless advocate for Lyme patients. That's why I asked Christina to participate in The Lyme Interview during Lyme Disease Awareness Month. Her story is similar to many of ours in that she was misdiagnosed for many years before an eventual Lyme diagnosis In spite of everything she has gone through on her Lyme journey, her positive voice shines through on her blog and in this interview. Make sure you visit Lady of Lyme and follow Christina on Twitter.
Tell us a little about your blog and who you are:
Hi everyone. My name is Christina Kovacs and I am the creator of the blog Lady of Lyme. I'm from Kentucky and I blog about the ups and downs of my journey healing from Lyme disease, as well as, sharing research and resources with others. I like to think of my blog and my twitter as a little community, because it's very much a give and take. I learn so much from others, and vice versa.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
I live in Kentucky and prior to getting diagnosed I had absolutely no idea what Lyme disease was, nor was I aware of the danger of ticks and the need to be protected when spending time outdoors. It was 2006 and I was playing flashlight tag in a wooded area the summer before I went to college. The next day I woke up and came down with what Doctors called a "summer flu." I was sick for an entire month completely bed bound, and I remember thinking this can't be normal. I was eventually given some antibiotics that helped (not the right kind or enough for Lyme), and that seemed to get me well enough to go off to college, but I never felt the same. The fatigue lingered and body pain lingered, and more and more new symptoms began to pile on. Looking back I can definitely say that summer night in 2006 is when I contracted Lyme Disease. As with most Lyme stories I got more ill as the months and years passed while searching for answers, and for me it took 5 years to receive a diagnosis.
What are your passions?
Oh goodness, I feel like I have so many. I was in school at FIDM (Fashion Institute of Design and Merchandising) working on my second degree when Lyme disease finally caught up with me to a point where I could no longer function. I had to quit school just 2 credits shy of graduating and move home for treatment. Design and the world of fashion have always been a passion of mine because of the ability to create. From a very young age I would seek out local seamstresses to custom make clothing for me that I had dreamt up in my mind. I really enjoy crafting, reading mystery novels, and watching crime solving shows (I am a murder mystery fanatic) and a huge animal lover. I've volunteered at rescues in the past, and hope to do that again when I am well enough. I would love to rescue, adopt, and save every homeless dog if I could. And lastly and most importantly my greatest passion lies in God. My faith has been everything to me, and it's what has carried me though my highest and lowest moments.
What was your lowest point and how did you find your way out of it?
Hands down my lowest point was when I relapsed. After fighting through treatment for about 3 years and seeing glimpses of my health coming back, it all came crashing down around me. It felt like it happened in slow motion. I was desperately trying to stop it, but I couldn't. The relapse brought new symptoms, some of which were impossible to control. It also brought along depression (which prior to that I had never dealt with). It hit me hard, and that was definitely my low point. It was a long road, but I got out of it with the support of my family, with my pastor coming to my home for bible studies by my bedside, and with Doctors helping to stabilize me and give me a sense of hope that the downward spiral was slowly coming to a halt. It took baby steps, but I began to see the light at the end of the tunnel. I would say the key and saving grace was that the people around me carried my hope for me when I was out of steam. I absolutely did not know how I would recover, but I was surrounded by my family and my faith which sustained me.
In honor of Lyme Disease Awareness Month, what do you want people to know about Lyme disease?
That it's not named after the fruit. Haha, just kidding. I do get that question a lot and I always chuckle. But in all seriousness I would want people to know that Lyme Disease is completely preventable if you just take precautions and learn to recognize the symptoms. I wish I knew in 2006 what I knew now, and that I had even 1 person educate me about prevention and early intervention. This disease is something that can be caught early before it causes mass body wide damage, and having the facts can change the course of someone's life.
What are you most grateful for in your healing journey?
The people I have met. I have met some of the most incredible and kind human beings on this journey who I feel so lucky to call my friends. Their strength astounds me and their authentic friendships remind me what it's like to have people in my corner who I can always count on.
What changes do you still feel you need to make in order to heal?
If I had to pick one thing, I would simplify it and just say physical therapy. PT in every different format; from visual PT needed to repair brain damage, to physical PT for my body which has been primarily in bed for years on end. There is a lot of healing and re-learning to do for parts of my body which were damaged and affected by Lyme disease.
Do you have a role model in the Lyme community? Who and why?
Katina Makris. When I was first diagnosed in 2011 I was absolutely terrified and overwhelmed. I had made the mistake of Googling Lyme Disease and was under the impression that I may never be well again. I tried searching for others online who recovered and kept coming up empty. That's when the mother of my boyfriend gave me the book, Out of the Woods by Katina Makris. That book completely changed my life. It was the most honest, hopeful, raw journey, which took me into the depths of the hell Katina fought through. It showed the struggle, but it also showed how she came out of it on the other side stronger than ever. She recovered and wrote the book many years after she was well, so I also got to read about how much richer and fuller her life was after she survived the fight of Lyme disease. That book is what gave me hope to begin treatment, and it gave me the fuel to say, "I can do this and I refuse to back down." If Katina could survive all that she went through, then so could I. She was my first role model, and still continues to be as I see her living her best health life 10+ years post Lyme. She is a huge inspiration through and through.
Please share a mantra or quote that inspires you:
"But God knows the path that I will take; when he has tried me I shall come out as pure as gold." - Job 23:10
I'm always looking for new stories and perspectives on Lyme disease, healing, and wellness. If you are interested in being featured on The Lyme Interview, head on over to my Connect page.
"The purpose of life, after all, is to love it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience." - Eleanor Roosevelt
Living, Loving, and Lamenting with Lyme: An open letter to the nasty nymph who picked me - By Lindsay Penkower
Dear Nasty Little Nymph:
Don’t let the title of this article fool you. Things have been downright sucky since you picked me.
I bet it was in my early 20's during my obsessive hiking phase, where, with no kids and no real responsibilities, I spent the majority of my weekends trudging through your neck of the woods without a care in the real world. I’ll chalk that one up to home court advantage.
Or perhaps you launched a sneak attack during one of those long treks down to the beach where I was too distracted by kids (and my role as a professional Sherpa) to remember to put on long pants.
Or maybe, just maybe you stole a bit of my blood and ultimately a great deal of my energy, during one of those "glorious" Sunday morning nature walks I like to take with my family - you know the ones that usually end with me pushing a 75 pound stroller up a steep hill while trying to dodge fruit snacks flying out the sides, as well as my husband's disdainful "I-told-you-so" looks.
Whenever, wherever you decided to infect me, your bite would change the course of my entire life and shape me into the person I am today. And even though you can't hear, speak or read for that matter, I feel like I needed to confront you and tell you exactly how I feel. Here is my real, raw, honest and sometimes downright depressing letter to you:
In some ways, you are a thief of epic proportions. You have stolen the life I once knew and loved - one where I was happy, healthy and hopeful for the future. I spent days crying in frustration as I was forced to merely listen to the beautiful noise of my three kids laughing and playing downstairs while I laid sick and helpless in bed. I would stare aimlessly out the window aching to be the active, present, and vivacious mother my kids so desperately needed and deserved. But instead, I was alone. And sick. And scared. And waiting for answers that I felt would never come. All because you chose me. And it's not just me you hurt you nasty little Nymph, but my kids too. In some ways, they have felt the sting from your bite even more deeply than I. They miss their old Mom. The one who played excessive rounds of hide-and-go-seek and always managed to fit in the tiniest places; the one who at bedtime could crack their door open at just the right angle to make sure that the "bad guys" don’t get in; the one who knows just what to say when one breaks down in tears after discovering that flowers (and people) don’t live forever. My daughter asked me the other day, "Mom why can't you volunteer in my classroom like the other Moms?" Now, let’s assume that a nasty little bug like you even has feelings - doesn't that break your heart? I was supposed to be my kids eyes and ears, guiding them through this crazy thing we call life. But instead, I'm sick. Because you chose me.
Despite all of the things I've missed out on because of your seemingly innocent choice - the birthday celebrations, class parties, soccer games, showers, weddings, and bedtime stories, I will never forgive you for taking away my precious time with my newborn son. There should've been a lot of firsts - first time making eye contact, first smile, first laugh and first time rolling over. There should've been many lazy Sundays where we sat and watched his siblings play while he nestled deep into my chest and I ended up nodding off to the rhythmic movement of his breathing. And finally, there should’ve been at least one early morning stare down, where I would place him on my lap and his Dad and I would examine and admire every inch of his face and make determinations as to who he most resembled. And of course, most often, it would be me.
But there were none of those things. Instead, I spent my time in multiple doctor's offices across the country, where I had to endure painful and sometimes useless treatments, the worst of which was a prescription for steroids. At the tender age of four weeks, I could no longer feed my son from my body. I felt useless, hopeless and resentful. All because a little heartless, callous and wretched little nymph like you, chose me. Oh and let’s not forget the myriad of painful and bizarre symptoms which started with numbness, tingling and gradually lead to facial paralysis and then the inability to speak (which subsequently landed me in the ER). And the most life-altering, horrible and painful complication that most likely arose from your nasty little bite - my profound hearing loss - that would forever change my ability to communicate with my friends, family members and kids. That was the loss that robbed me of a life I once knew and loved - full of sound, music and familiar voices. Now as I sit here recovering from what I hope is my one and only cochlear implant surgery, where the pain and fatigue feels too much to bear, I can't help but wonder why you chose me. Someone that had so much to live for, so many others to care for.
But, after forsaking your name and your entire existence, I have one more thing to say to you. Of all the things you have taken from me, including my physical strength, ability to mother and hear the sweet sound of my daughter’s voice, your choice has inadvertently given me the greatest gift I will ever receive. You have actually given me strength that goes way beyond my physical being. You have equipped me with the greatest problem-solving skills and now my goals, desires, aspirations for myself and my family are higher than I ever thought possible. You have given me perspective - I no longer worry about trivial things like my underwear being neatly folded in my drawer or whether my kids’ socks are on inside out before they leave for school. You have bestowed upon me a higher calling in life that extends well beyond caring for my immediate family and that calling is to constantly fight for my health and happiness and help others do the same. I laugh more, worry less. And when I’m feeling alive and healthy, which fortunately is happening more often these days, I embrace it with a fervor and appreciation unlike anything I have ever experienced. And finally, little Nymph, you have given me a heck of a lot of faith in my body and in humanity in general. The kind of faith that can carry me through the sick and difficult days and instill me with the hope that one day I will beat the Lyme and co-infections that have taken so much from me.
Oh, and one more thing. Because you chose me, I have become the mother that I always wanted to be. I may not go to every single class party, soccer game or dance recital, but now I’m a living example of what I try to teach my children on a daily basis - fight for what you want in life, but learn to accept those things you can’t change and embrace and celebrate the unique and beautiful person you are.
So thank you for choosing me. The one who went through hell, but came back a stronger, wiser and better version of herself.
Lindsay is a recovering lawyer and teacher turned writer, blogger and advocate for healthy living. She lives in Danville, California with her supportive husband and three energetic kids. To find out more about her fun, crazy, unpredictable and wondrous journey toward greater health and wellness, please visit her blog Essential Living.
Photo Credit: BrittRene Photography
"What I like most about change is that it can be a synonym for 'hope.' If you are taking a risk, what you are really saying is, 'I believe in tomorrow, and I will be a part of it.'" - Linda Ellerbee
Chornic fatigue is one of the most common symptoms of Lyme disease. Almost everyone with Lyme has dealt with crippling fatigue at one point or another. Usually, it's something we cope with on a daily basis.
I wanted to write an article for the Global Lyme Alliance blog that talks about how chronic fatigue is different than feeling tired, and explains what it actually feels likes to have it. I had some great input from other Lyme patients.
You can read the post here:
Chronic Fatigue or Feeling Tired?
What does chronic fatigue feel like for you?
"Not one drop of my self-worth depends on your acceptance of me." - Quincy Jones
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.