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When I Decided Not to Share the Holidays With My Lyme Disease

May 18, 2017

Editor's Note: The original version of this essay was written by the founder of LymeBrave and posted to her personal website, www.susanpogorzelski.com.
It was cross-posted to The Mighty with the given title on November 18, 2016.

 

 

 

 

My dad and I sat on black and silver chairs in a tiny brick house 200 miles away from home and listened to my doctor discuss adding a natural supplement to my standard Lyme disease treatment. I watched as he drew sketches on his clipboard to show how the supplement breaks through the biofilm that the bacteria create — yet one more method of protecting themselves in order to survive and evade antibiotics.

 

A growing dread began to build in the pit of my stomach. Taking this supplement would result in a chain reaction in my body that would eventually lead to more inflammation, and every single symptom — from physical to neurological — would be intensified.

 

Which meant more pain. More fatigue.

 

I was going to get sick again. You get worse before you get better — that’s the Lyme disease treatment mantra. I know it intimately. We’ve been down this road before.

 

I glanced at my dad before my gaze settled on my doctor, unwavering and resolute.

 

“Let’s do it,” I said. “But,” I added, stopping him before he could write out a prescription, “just give me Christmas. I’ll do whatever it takes to get better after, but I want to feel good for Christmas.”

 

 

And I have been feeling good — better than I had been in months. The neuropathy began again in March, though I pushed the thought of a relapse to the back of my mind. In June, the headaches and dizziness seemed familiar, then the loss of focus, memory and comprehension swiftly followed in July, and I couldn’t ignore it any longer. Back on treatment after nine months in remission, I slept through August and most of September and silently cried through the pain in October until I finally saw some relief in November, some symptoms resolving themselves and others trickling in now one at a time instead of bombarding my body all at once.

 

Hope. That’s what I had in December. Sudden and unexpected hope that I could get through this a second time.

 

Every once in a while, there comes a moment — one simple, nondescript moment — when you start looking ahead instead of mourning what’s been left behind, and you remember how grateful you are for all that you have and the strength you’ve gained, instead of grieving what’s been lost.

 

I didn’t know what I was fighting then, when this all first began, and all those years of treatment and progress and building back myself and my future seemed to crumble around me again with this relapse that seemed harder than the original diagnosis. I didn’t know what I had left.

 

No, that’s not entirely true. I knew what I had — I’ve always known. Unconditional love from family. Unwavering support from friends. Tiny tendrils of hope in the heart even when I despaired.

 

And strength.

 

I had strength. Because I knew what I was up against this time. I’d been through it before, and I’m not the same person because of it. I’d get through it again.

 

And I am. These last two weeks, I’ve noticed those moments of change — imperceptible to most, but monumental to me. Larger waves of energy led to a flood of renewed hope, and I thought, “This is what I’m fighting for. To feel good again — healthy, hopeful, alive. If I could get through it then, I can get through it now.”

 

This is what I’ll look back on when I start this new treatment — a memory of how I felt then. This is what I’ll look forward to: making plans to see old friends in the spring and summer — a reminder of how I can feel again.

 

 

That’s what I wanted to hold onto now — a chance to feel normal and celebrate a season with renewed energy and excitement. Visits with friends. Christmas with family. New Year’s Eve ushering out the old and welcoming in the new.

 

One last hurrah before I gather my strength to fight one more time.

 

“I’ve been spending all my time and energy focused on getting better,” I told my doctor and my dad.

I’d had a taste of it before — what it was like to live life without Lyme disease — and I wanted that again. “This is the time to do whatever it takes. But not until after Christmas.”

 

I wasn’t about to share the holidays with this illness. I was keeping Christmas for myself.

 

Because it’s these moments that I’m carrying forward into the new year. It’s the memory of how I feel right now that I’m clinging to, when I need the reminder of where I’ve been, where I am, where I’m going.

 

And the future I still have yet to live.

 

 

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LymeBrave Foundation, Inc. is an education and support services 501(c)(3) non-profit organization created by patients, for patients. The material found herein is for informational purposes only and is not a substitute for the medical services or advice of professionals. While we aim to provide emotional support resources to patients and caregivers, LymeBrave Foundation, Inc. makes no representation of warranties with respect to the context of the information herein. LymeBrave Foundation, Inc. is not liable for any damages, including the health and wellbeing of individuals, arising herefrom. LymeBrave Foundation, Inc. is not responsible for third-party content, nor does it recommend or endorse third-party content.

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Lyme patients are at-risk of suicide due to the accompanying decrease in quality of life. If you or someone you love is suffering from depression or suicidal ideation, contact your physician immediately or call the
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