My Lyme Story: The story of how the worst of my illness began...

My Lyme Story: Part One

This is the first installment of my Lyme story, sharing how everything shifted for me three years ago. Though my symptoms, ER visits, and unexplained infections all began as early as age 7 for me, it wasn’t until later on that I began to pursue answers.

I had a severe episode in 2010 that led to a series of tests and my first diagnosis of relapsing-remitting multiple sclerosis. From 2010 to 2013 I was able to lead close to a normal life with my abilities. This is the story of the weekend that all changed. 

The first half of 2013 was incredibly busy for us. I remember feeling at the end of my rope emotionally and physically. Always fatigued, usually anxious, I wasn’t sleeping well and I’m guessing Trev felt the need to walk on eggshells around me more often than I’d wish.

I must have told him 587 times how much I wanted a break. Okay, so not 587 times, but a lot. I was struggling with the stress of increased traffic, feeling overwhelmed by our weekly commitments, and putting too much pressure on myself to do more than I could handle.

The first weekend in June I attended a two day women’s conference at our church, where Jen Hatmaker was speaking. I’ve shared my love for her here before and if you aren’t familiar with her you should at least bless yourself with getting acquainted with her humor. She is HILARIOUS and so gifted as a speaker and writer.

I soaked up so much during that conference. It was healing for me. Restful and calming.

When I returned home from the final day of the conference on that Saturday, I knew Trev had planned a special date for us. I had it in my mind that he’d planned a picnic at a park nearby. Or maybe a beach visit. Either of which I would have been thrilled with.

But instead, this was his response:

“We’re going to leave in 20 min and you need to pack an overnight bag. And I’m not telling you where we’re going yet!”

[Insert a happy Kami: huge smile, giddy with excitement, and frantically packing the most efficiently packed 20-min-bag of my entire. life.]

It was the best last-minute surprise ever. I don’t think my smile left my face the whole drive to Manhattan Beach.

Little did I know: this would be my last taste of “normal” for years to come.

He took me to the marina first thing, where we sat in a German restaurant open to the marina and munched on an appetizer. Afterward, we checked into our hotel and relaxed until it was time to make our way to dinner reservations at a local Italian restaurant. The food was so good (gluten-filled pasta, you’re calling my name) and our waiter was a riot – loud, expressive and he blew a kiss at us almost every time he left our table.

Before we headed back home on Sunday, we went to the pier for a short walk. Early on I began to experience an influx of dizziness so we took a quick picture and headed back to the car. At the time I attributed it to my diagnosis of multiple sclerosis…I now know there was more going on than I could have imagined.

The last weekend of normal in my chronic illness journey...

Knowing we would need to eat regardless of how I felt, we headed to a Lingren family Mexican food favorite in LA for lunch. As we sat eating, I began to feel increasingly worse between dizziness, a migraine setting in and a growing tingling and weakness in my limbs. It was all coming on so suddenly and fierce.

We decided it was best to head home so I could rest. I was beginning to feel concerned that I was experiencing a relapse. In relapsing-remitting multiple sclerosis, the patient typically experiences long periods of higher function with scattered “episodes” of heightened symptoms or a full blown crash. Waking up in awful shape the next morning was the realization of my fears.

I spent the next two weeks glued to the couch for the majority of my days.

I was too dizzy to stand. In too much pain to function. Unable to engage in community. All of the layers of struggle and seemingly overnight change was brutal. 

At the end of those two weeks I began to feel like I might be able to return to work. And so I did for a few scattered days before my body inevitably crashed again. It was difficult to accept the very clear message that work was officially out of the question for me.

Later that fall I ended up in the hospital needing a blood transfusion. After mysteriously losing far too much blood, my hemoglobin was dangerously low and my symptoms were going haywire. After the transfusion and an overnight stay in the hospital we saw my hemoglobin levels rise to normal levels. But I continued to struggle heavily for the remainder of 2013.

I found myself lost in a cycle of “we don’t know what to do with you” among the neurologists and doctors I saw. It was always: more medications, more advice to “eat lots of healthy grains and exercise” (never mind the fact I would barely hobble into each appointment), and a list of test I needed to take.

I was declining and fearful.

I had a tunnel vision view fixed on MS and a knowledge of its tendency to transition into a progressive state, which left me in a puddle of worry.

Would I end up in a wheelchair permanently? Would I be able to have children? How much disappointment could I actually take? Or my husband, for that matter?

In many ways it felt as if we were drowning. We were reaching for hope, but our grip often wasn’t strong enough to grab hold. Improvement didn’t come as the neurologists hoped, or as we continually prayed for. Any lessening of symptoms felt few and far between and never would last long.

Every year of this difficult journey has been hard, and each in it’s own unique way. That first year was the year of overwhelming unknown. A roller coaster of failed hope mixed with the ups and downs of my body’s varying ability to disability in those first few months.

But little did we know, we didn’t even have the right answer. My body had been fighting a battle that none of these doctors considered and we wouldn’t pursue until the following year. The year we would learn:

I have chronic Lyme disease.

I’m sharing this series for the purpose of awareness and to hopefully plant a seed for someone else who may have also been misdiagnosed. However, I am not a doctor nor do I claim to be one. I simply believe we are our best health advocates. If you are unsure of your diagnosis: Do your research. Ask the hard questions. Advocate for your health and answers. 

 

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9 comments

  1. Angela says:

    Just reading this now… Just signed up for newsletter. As a Lyme fighter as well, I’m sure I’ll forget I read this and will return to it many times. Thank you for spreading the awareness of the biggest challenge we will ever face.

    • Kami says:

      Hi Angela. I understand the Lyme brain memory! Goodness can it be a challenge sometimes. Thank you so much for reading and connecting here with me. It’s always bittersweet to meet another Lyme fighter – comforting to meet others who understand this fight, painful to know someone else is struggling too. Sending you healing hugs and so much love!

  2. Valerie says:

    Dear Kami,
    I just read this. I can identify with your journey so very much. I was told 10 years ago that I most probably had MS. I was tested extensively after a severe episode of Bells Palsy and Foot Drop and loss of speech for a month. They told me I would probably always need a walker! Then several months after that episode I experienced a reprieve from the most severe symptoms. Over the next 10 years I went on to have several more severe episodes of foot drop and bells Palsy. They finally concluded that I have Lyme Disease this past March. I am so thankful to read your story. It helps me not to feel so alone in all of this. I really enjoy your blog posts. I am looking forward to reading the rest of your story.
    Blessings , Valerie

    • Kami says:

      Hi Valerie,
      Wow, we do have similar journeys. I’m so thankful you found the correct diagnosis for your case. There are mixed feelings that come with a misdiagnosis, some relief and some frustration for going so long without treating the correct illness. I’m sending you gentle hugs, friend. Thank you for reading the start of my Lyme story. I’m hoping your week is going as well as possible. <3

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