‘The tests came back perfect, so you can stop convulsing. Take some Advil and SUCK IT UP.’: Chronic Lyme Disease warrior details journey, ‘I celebrate my small victories’

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“’She has hypoglycemia, that’s why she is shaking. You need to forget about the Lyme diagnosis and get her to an endocrinologist. Do you see her? There is something very wrong,’ the EMT says to my husband, as they’re hovering above me in the middle of an ice cream shop. ‘She’s gonna need to open her eyes, sit up, and be able to answer my questions or we’re obligated to take her to the hospital,’ the other EMT chimes in, as if I have a choice in the matter.

Just 45 minutes earlier, I took a dive to the floor mid-conversation and had been intermittently convulsing and crying ever since, unable to move, open my eyes or speak. My friends and sweet husband know me well enough to know two things: One: it will eventually pass, and I will be fine. I’ll likely talk and walk like I had one too many drinks—we lovingly call this the ‘jig leg’ or ‘doing the dance’—but I will be fine. Two: there is most likely a spiritual component to all of this as we are here for a church leadership retreat and we have an adversary that wants nothing more than to take me the heck out.

Fortunately, I did come out of it and I was able to open my eyes, move and answer their questions. Funny enough they also tested my blood sugar and it was perfect. Cue EMT with the hypoglycemia diagnosis putting her tail between her legs and not looking at me the rest of the night…

Woman in hospital bed upset wearing glasses
Courtesy of Katie Rios

My name is Katie Rios, and I’ve been battling chronic illness for over two decades. Before it had a name, all I knew was my body wasn’t like other kids’ bodies, and around 2011 it seemed to intensify. In November of 2013, I started fumbling for my words in the middle of a conversation, unable to get my thoughts from my brain to my mouth. I was in severe pain every day, having bouts of random dizziness that were strong enough to lay me flat on my back, waking up in the middle of the night with all limbs numb and unable to retain information. I knew something was very wrong but no one would listen to me. ‘You’re just depressed. Take some Zoloft and meditate. You’ll be fine. Everybody deals with pain. You raced motocross all your life, of course you’re going to hurt. Take some Advil and suck it up. You’re just getting older. Everyone gets forgetful. It might help to write things down to help you get them out. Do you want to be admitted? What do you want? Nothing is wrong with you. The tests came back perfect, so you can stop convulsing now.’

Everyone from doctors to friends to family members convinced me everything was all in my head and it destroyed me. Their words fed into the lie I had believed since the first time I had a 104-degree fever and joint pain and no one knew what it was: what you feel isn’t real and what you have to say isn’t valid.

Thankfully, I met a doctor that took an hour to just listen to me, check in with my body and give a name to the suffering I had endured since I was five: Lyme disease. A tick-borne illness that destroys every single system in your body. A diagnosis medical professionals deem incurable and impossible to completely heal.

Woman sitting in a chair with two purple lights shining on her head
Courtesy of Katie Rios

Since the day I was diagnosed, I’ve been on and off treatment for over five years. I’ve had a PICC line and a port-a-cath placed to infuse medications that made me feel and look like the walking dead, flew to Kansas four times to go to a treatment center, and have spent close to $200,000 trying to get well. At my lowest I was mostly bedridden, using a wheelchair to get out and having multiple seizures a day, every single day. I remember being scared to go to sleep, wondering if I would wake up. However, in my darkest, loneliest times, I have also experienced the goodness of God in ways that are almost unfathomable.

Multiple times, I’ve felt warmth wrap around me as I’ve cried in pain in the middle of the night. Days (or sometimes hours) after breaking down in a panic attack because I wasn’t able to work enough hours to pay the rent, checks have come in the mail or been deposited in my account. I’ve had the privilege of meeting the most amazing people, both in person and online, who not only understand the realities of chronic illness, but are living radical lives and changing the world.

Woman sick with head on table near a bottle of essential oils
Courtesy of Katie Rios

I’ve learned to celebrate the small, seemingly insignificant victories, and I’ve learned to hang onto the big ones with white knuckles, knowing things can change again in an instant. I break out the party hat for things like folding my clothes or making a meal, and I assure you, I will never take things like going out after taking a shower for granted again.

Most of all, I’ve learned to trust in the promises of God even when all seems hopeless, and have seen miracle after miracle come when the future looked bleak.

Perhaps my favorite miracle of all is the fact that I’ve never had to call out of leading worship at my church because of my health. Even when the day before was packed with seizures I’ve woken up with supernatural energy and watched God work powerfully through my weakness. I’ve felt all of my pain disappear any time I lift my voice to sing.

Girl leaning on wall posing for picture smiling
Courtesy of Katie Rios

I can tell you without a shadow of a doubt, I am a completely different human because of chronic illness in the best possible ways. If I had a choice in the matter I wouldn’t have traded the past six years for anything in the world. The joy of seeing God show up as comforter, friend, sustainer, and provider is priceless to me. He truly chooses to use the weak things, and His strength in my frailty will never cease to make me weepy.

Today, I am walking. I no longer need a wheelchair. I no longer fear going to sleep. Am I well? Not quite. I am still in the middle of the fire. It’s real hot. But you know what? The same God who promised me this trial would end in the glory of God promised me He would be with me in the fire. The same fire that threatened to destroy me is going to change me.

Whatever you’re walking through, I know the same is true for you.”

Courtesy of Katie Rios

This story was submitted to Love What Matters by Katie Rios. Follow her on Instagram here. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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