Writing is therapeutic.
No shocking info there, right? If you’re reading this, you probably already subscribe to that philosophy.
Well, my last blog post was beyond words restorative. It was holy moly, in-your-face, why-didn’t-I-see-that-before kind of shocking.
Let me explain. After clicking “publish” on my last post, I scanned over the finished product, as I always do, making sure I hadn’t accidentally typed something like “pubic area” instead of public area. (Yes, I really did that once.)
But before I examined the text, the image of my husband and I standing in the river on our wedding day captured my attention. I think of how life has changed in the last year, how happy we looked, how snug my dress apparently was on my upper body…. and then I see it.
Take a look. I have a port-wine stain birthmark on my right forearm, which I rarely even notice, but look above it on the back of that arm.
Do you see it?
The bull’s-eye rash of a Lyme-infected tick bite.
Not only was it visible to everyone who attended our wedding, but it was photographed repeatedly, documented in over 2,000 photos from that day.
I connect my external hard drive and comb through the wedding photos. I see this.
Again, holy crap.
The proof has been there all along.
I was bitten in Pendleton or Grant county in West Virginia on or near our wedding day. I had the rash every doctor had questioned, but I never knew it.
Actually, I take that back. I vaguely remember noticing the rash after the fact in the photos, but I was too vain to hone in on it. Instead, I focused on the ten pounds I’d gained, the bra straps visible beneath my dress, how my arms had lost definition.
I overlooked the rash, and four months later, I was in cardiac distress. I truly believe had my family doctor not ran the Western Blot, I would’ve died from a heart attack. He had no hunch; I wasn’t exhibiting traditional acute symptoms and we do not live in an endemic area. He was simply trying to find a diagnosis by process of elimination, and we got lucky.
Two positive results prompted intensive Lyme treatment and phone calls from the CDC, who asked repeatedly if I remembered removing a tick or seeing a rash. I didn’t. Local health departments wanted to blame other counties. As “outdoorsy” people, it was easy to track our camping or vacationing history and place blame elsewhere –anywhere but here because no county health department wanted the hassle and ugliness of a Lyme diagnosis.
I was late-stage Lyme by the time I was diagnosed, so the initial infection could have been weeks, months, even years earlier. We speculated. A lot.
The most exhausting part though was dealing with the ignorance. I saw multiple specialists who argued with me, positive test results in hand, claiming that they questioned the accuracy of my diagnosis based on our location. Tears, frustration, doubt. The testing is just a little over 50% accurate, so when members of the medical community challenged my diagnosis, I cried and worried. I just wanted to be well, and darn it, these people were supposed to be the ones who could fix me.
Now, looking at these photos, I know I was bitten. Clearly, I did have the classic rash. I had the flu-like symptoms about a month later, but I kept pushing forward. I missed it. We all did.
I sort through the pictures. A mixture of surprise, frustration, and FINALLY fills me.
Surprise. It was there all along.
Frustration. It was there all along, and I neglected it.
Finally. It’s here. The proof is in my hand. The where, the when, a timeline forms in my head.
Part of me wants to stop by the rheumatologist’s office, wave the photos around, and scream, “Bite me!”
I know. I know. Not very appropriate, but it adequately displays the level of angst I’ve experienced. I knew in my gut I had Lyme disease, but society made me doubt myself.
Had I listened to some so-called specialists, I would have believed my test results were false-positives.
Had I listened to the CDC, I would have believed I don’t live an endemic area and, therefore, can’t be infected.
Had I listened to statistics, I would have thrown out the diagnosis based on the fact that less than one percent of those diagnosed with Lyme display cardiac symptoms.
Thank God I listened to my family doctor, who was thorough and open-minded during diagnosis. I don’t believe I’d be alive to share my journey with you if it weren’t for him.
Upon seeing the rash in these photos, my husband commented had we paid attention, had we caught it, I could’ve taken an antibiotic and been fine. But here’s the thing. I wouldn’t have known to do that. A year ago, my knowledge of Lyme disease was a simple awareness that it existed. I didn’t know the signs, and I certainly didn’t grasp the potential severity of the disease. I think I would’ve dismissed it as a weird yet not uncommon rash, a simple side effect of camping.
I wouldn’t have known any better, but I’m praying that my experiences are keeping you, my faithful reader, and your family safe.
Months ago, I started this blog about coloring through the brokenness, which means sharing revelations and processing them alongside you. This is what I am trying to come to terms with this week.
Listen to your body. You know it better than anyone else, even many of the medical specialists.
Mommas, trust your instincts with your babies.
And speaking of babies, there were so many at our wedding, including this adorable brother and sister dancing…
And my daughter and niece hugging…
Thank God, it was me. That’s what keeps running through my mind as I look back over pictures from our beautiful wedding day. As difficult as the last year has been, I’m just so darn grateful that I was the one bitten, not them.
Thank God. Thank God. Thank God.
After all, no matter how big your babies get, whether they’re four, ten, sixteen or eighteen, you’d give anything to keep them healthy, including yourself.
Jena I can only wish one of us would have noticed the rash or bullseye and pointed it out or even ask? Not that we would have known what is was but at least when you began getting the other symptoms you could have went to the doctor. Sorry!
It was a very busy day, Grace. Crazy to think that back then we thought forgotten blackberry cobbler was a crisis.
XOXOX It’s always better to know, isn’t it? I love you.
It really is. Sure, it unleashes the “what ifs,” but the timeline is such a great tool for my treatment. Grateful for that. Love you too!
Wow ! The rash, or bullseye, really shows up in the pictures ! Amazing that you noticed it. S o glad you are improving. I have learned so much about Lyme disease since I started reading your blog. Thank you.
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I have read everyone of your blogs.I actually read them all several times. I always make sure John and Jimmy know when I notice you have posted a new blog.If they tell me they have been busy and havent had time to read them after a few days I read the blogs to them. You mention a lot of the symptoms you have had and I want to do my part as their mother to make sure they are aware of some of the symptoms and how important it is to do all they can for protection of getting Lyme disease. I never once thought about taking steps to protect myself from getting Lyme disease until you were diagnosed with the disease.
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What a frightening situation. I’m glad that you are improving! We had a bullseye rash here recently that turned out to be a false alarm, but the experience has made me very aware and wanting to be better educated. Next time might not be a false alarm. Thanks for educating us with your (wonderful) blog!