It’s been a rough month.
I relapsed. Fast and hard. I’d been doing so darn well. Walking everyday. Taking less medicine. Being more and more active. I really thought I was going to be well enough to return to work. I’d bought a couple new YA novels, scribbling a few notes for lesson plans. I even took a can of brick red paint that had sat in the dining room for almost a year back to Lowe’s to be shaken back up……
Two days later, I asked John to take me to the emergency room. It was the dining room that came to a crashing halt when I first got sick last November. Maybe there’s a curse on that dining room??
Well, nonetheless, I’d had a good run. Over the summer, I went to Pittsburgh for a girls’ night for Gracie’s 10th birthday, Columbus, OH with John and another couple for a two-day concert, upstate New York for a refreshing Lyme conference, and Smoke Hole, WV for our annual family camping trip and anniversary. Sure, I was still sick, but my illness was managed, meaning I took medicine and had changed my diet enough to tolerate and occasionally enjoy these events.
Then my sister and I took our little ones to the showing of Disney’s Frozen at the local amphitheater. My niece posed with Elsa and Anna, teenagers volunteering their time and impressive makeup and musical talent, and Olaf, the most unlucky volunteer who had to wear a snowman costume in 90 degree heat while posing for photos with preschoolers for hours. (There is a special place in heaven for Olaf for sure.) The kids had a blast. It was a great fundraiser for Children’s Miracle Network, and as we waited for darkness to fall, I thought of my girls and my illness, and wondered if the lessons I’m trying to instill in them are sticking. We watched the blue moon, which was ironically brilliantly orange, rise between the trees, and the movie finally began. Every part of me hurt. My ankles, knees, spine. I couldn’t even open my right eye. The kids lasted through “Let It Go,” and, yes, the entire stadium of euphoric little girls sang and danced in full interpretational style. By the time Elsa had let her hair down and created her castle, our kids were done, and I was secretly relieved. My entire body was screaming in pain.
And that was my last good day.
The silly thing is I really thought I wouldn’t relapse. I knew it happened to other Lyme victims, but I really, really believed it wouldn’t happen to me. How absolutely absurd was that?? I’d already defied the odds and was bitten by a Lyme-infected deer tick in a non-endemic area. Then four months later, I defied the odds again and became part of the 1% of Lyme patients who develop Lyme carditis. Why in the hell did I think I was so special that after my five months of IV antibiotics and even more months of oral antibiotics and supplements I could just jog off into the sunset and return to my little world??
No, I spiraled. I could feel it happening, but I couldn’t stop it. My LLMD was on vacation and out of cell service range. I waited too long for help. By the time I sought it, I was desperate, calling my reliable family doctor, who had orders ready for me at the local emergency room within minutes. Unfortunately, within a few days, I was in surgery, having a port put in my chest, providing constant access to my veins. Thank God for this small miracle because the veins in my arms couldn’t handle anymore abuse. I returned home with IV antibiotics and an oral cocktail, but the relapse was still spiraling. Within days, the pain was too much and I returned. My doctor worked to stabilize my pain, to get me on the other side of this Lyme flare, but the seizures began. Television, reading, anything requiring eye focus, which, dear readers, is why I haven’t written much lately, could create a pseudoseizure. I was transferred to a larger hospital where an MRI and lumbar puncture were conducted to try to determine if Lyme was the only culprit. Again I returned home in pain with a massive headache and with an even more sore back, but I vowed not to return to a hospital.
I curled up in my king-size bed with an embarrassing number of pillows. We strategically placed the heating pads as best we could, and we turned on the new movie Home. My girls got the best spots, cuddled right up on mommy, with caution, of course, and the teenagers filled in the rest of the bed at odd, awkward angles the way only teenagers can fill. We laughed. We giggled. And I cried. Sure, I hurt, but oh my gosh, I felt so blessed to be getting a dose of The Best Medicine in the Whole World. My babies all home, watching a funny, quirky movie about Home, at a time in our lives when this family unit was changing and home was changing. The oldest teenagers are living in their apartment, and I might add, seem to be doing so successfully thus far. Sure, FaceTime allows us a beautiful way to connect, but it’s just not….this. It’s not this medicine. It doesn’t have the healing powers of snuggling in momma’s bed.
I’m getting stronger every day. I’ve made the girls’ a hot breakfast every morning before school. That’s HUGE. I made it to Riley’s last first home soccer game, even if we did have to leave at halftime because I couldn’t manage the pain any longer. John, the little ones, and I packed up and went to the first football game of the season. I didn’t even argue over the wheelchair. Instead, I embraced the help and chuckled at Izzi’s twisted sense of humor. Once I was finally seated in the Oak Hill bleachers, I was grateful for that wheelchair; there was no way I would’ve made it that far with just the cane. I was able to witness Riley’s first extra point of the season, and the following day, I was able to watch his hat-trick, three soccer points in one game, even though my vision was blurry in my right eye.
Sure, I napped for hours and hours after. Okay, I slept most of Saturday. But I didn’t miss all those special firsts. I am trying to find the balance between resting and healing while being mom. I can make fresh cinnamon rolls for breakfast and braid hair in the latest Pinterest style, but then I budget a two-hour nap afterward. Mondays and Thursdays are earmarked for acupuncture appointments and blood transfusions about two hours away from our house, and my home health nurse comes on Tuesdays. All these appointments are resolved before the kids even get out of school so that by the time they get it home, on most days, I get to be mom, helping with homework, making sure bathes are done, reading the next chapter in Harry Potter, preparing snacks for tomorrow, packing the soccer practice bag. You know –the unrelenting mom stuff that I’m blessed to get to do. Yes, even when I’m sick.
I’ve been so blessed with help during my illness. My friend Jeanne showed up at at my house, made out-of-this-world gumbo, and spent the night with me, trying to cheer me up. My friend Tiff and her little girl made homemade gluten and sugar-free zucchini brownies that were un-freaken-believable. There’s just no better way to describe them. My husband’s best friend Bill came in to stay with us for a few days using the excuse of getting our storage building hooked up to the grid when in secret he was here to keep an eye on me, to be nearby just in case I needed anything. This relapse, among other things, has been hard, but love has shown up. My friend Christie realized Gracie was missing her folders, so she discreetly bought the five required folders and tucked them in her binder. My lifetime friend Grace picked Izzi up a couple days before school started and took her school shopping –dresses, outfits, shoes, purses, socks, even an umbrella. Izzi had a blast and was so much more confident about starting PreK. Another friend came to my hospital bed just before I was going to be transferred and held my hand. There were no perfect words, just big tears, I’m so sorry you’re going thru this, I will pray, and I love you. And that was enough. Just exactly enough.
There is no greater medicine than love showing up.
I’ve been struggling with a little anger at God for letting me be healthy for 15 minutes and joyful for about 10, then stealing it back away from me. If feels mean, a lot more mean than had I never known what healthy was or what happiness felt like. So I’m a little sullen, but God and I are talking it out. Eventually, we’ll be okay.
In the meantime, I pray a lot. I take my oral medicine and supplements four times a day and my IV antibiotics twice a day. I struggle with deep fatigue, so I sleep often, and I work hard to ignore the pain. I praise God for my family and friends who get me thru this, my baby girls who snuggle up and provide the Best Medicine, and my husband who keeps it all together. Again we are adjusting to new normals, accepting that I may never be able to return to teaching, which breaks my heart, and holding one another even tighter as we struggle through this relapse together.
I have to believe good will come of this.
My mind can’t even imagine the beauty ahead of us!
This is my story too!! I can’t write yet but I understand all you’re saying!! It’s so hard but we have to just keep getting up each time were knocked down!
Absolutely! I’m feeling more alive than dead lately, and THAT is something. XO! Thanks for reading A Broken Crayon.
I wish this was no one’s story, but I thankful that you found my blog! Validation is a wonderful feeling. It’s great just knowing you are not alone, right? 💜💚
Very well written about this devastating set back. But I was told in college, many many moons ago, “This to shall pass!” Love you!
I am here without a word of advice. The health stuff is hard, so hard when you have young kids and are trying to keep their lives balanced. I read Anna’s blog and found you through her FB post. I can’t imagine the ordeal you have been through, but I am sending you warm and healing thoughts.
Thank you so much, Kristen. I appreciate all the warm hugs I can get these days. XO!
Thank you for stopping by and taking the time to comment. After two particularly rough months, I seem to be on an upswing. Three weeks of mostly good days, so good, in fact, I’ve been well enough to write again! 💜💚
Someone just told me about this story so I looked it up thinking of you…..
I don’t remember if you had mentioned anything about bee venom or if it is helpful or not. Sorry you have relapsed.