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While listening to the podcast “Healing Lyme with Lauren” I’m hit with all kinds of emotions that I’ve not processed in years. Pain, sorrow, anger, hopelessness mixed with hope (strange, I know), and trauma.
Lots of medical trauma.
Listening to story after story of people living with the debilitating disease that is Lyme is hard. It’s hard because I care so deeply for others and it’s hard because I can relate to what they’ve lived. It brings it all back to the surface.
I have Lyme disease.
And have for 14 years.
It wasn’t diagnosed for 2 years, so in that time the bacteria were allowed to overtake my body and brain. It’s been a hellish ride. One I haven’t yet found an adequate way of expressing to those around me. Not even my closest friends and family truly get it.
In the beginning, before diagnosis and treatment, I honestly felt I was dying.
To this day, I think I could have been.
I was in and out of emergency rooms for months only for them to say, “you’re just dehydrated”.
I began going to different ERs in hopes of a different diagnosis and never received one.
The last time I visited the ER I was told it was a panic attack and I was just hyperventilating and I knew then I’d never go back to another hospital again.
Specialist after specialist told me I was fine, “your numbers are fine”, “your bloodwork is fine”, and “you’re fine”.
Meanwhile, I wasn’t fine.
I was far from fine but what I had they couldn’t see on their standardized testing.
— > I’ve come to realize how lucky I was to have a doctor that believed something was wrong and worked so hard to figure me out for months… but in the end, I was the one who figured it out.
After we had exhausted everything, every test, every specialist, every order, every blood draw, and the only option left was the Mayo Clinic, I miraculously remembered the tick bite from a couple of years earlier and asked if we could please just test for Lyme.
I begged her to just humor me.
The results were enough that she was ready to send me to an infectious disease doctor. After much research, I decided to cancel that appointment knowing I’d not find the help there I needed and I made an appointment with a Lyme Literate Medical Doctor.
After seeing my first LLMD it was official — I had Lyme disease.
I was sick.
I wasn’t just tired or panicked or depressed. Oh yes, I’m sure I was those things, too, but it was because of something called Lyme, not something in my head – or just life’s circumstances.
14 years later, I’m still sick.
I have pain that runs throughout my body daily. Pain in my joints and pain in my muscles. Pain in my skin, and sometimes even pain in my bones.
I have fatigue like you wouldn’t believe. I have an achiness that feels like the flu. My brain doesn’t work properly, I have to fight to find my words. I’m covered in a thick blanket of “fog” and depression.
I had almost daily migraine attacks until recently when my neurologist finally found a treatment that works well in my body to bring down the frequency of migraine episodes.
My eyesight is poor, I have ringing in my ears that never goes away, my muscles are weak, I’m overweight from inactivity due to fatigue and pain, and antidepressant medication doesn’t help… and my hair has been falling out in handfuls for years. It’s any wonder I have any hair left on my head at this point.
I have an ulcer from overuse of OTC medication for migraines — before seeking medical help for them- and I developed POTS (postural orthostatic tachycardia syndrome.)
YES, all of this from a tiny little tick bite.
I have a lot of trauma from my experience with Lyme disease.
I have a lot of medical trauma from the two years of seeking help from the medical community only to run into the doctor after doctor who didn’t believe me, wrote me off as a tired mom, depressed and anxious, or thought I was completely fine.
You grow up believing medical doctors are there to help you.
And while some doctors are interested in helping unravel a mystery, some just aren’t. It’s hard to believe until you’ve been in my shoes and the shoes of countless others.
All these years later, I still hold some level of resentment in my heart for the medical professionals that treated me so poorly.
Yet, in the end, that does nothing for me and so I’m working on healing from the pain and trauma they’ve caused all these years later.
I’m just trying to live my best life despite Lyme disease and other health issues.
That’s about all I can do.
Live with hope, lead with joy, keep an open heart to healing, and hold tightly to the fact that I’ve come through hell and I’m here to tell the tale.
I could have died.
I don’t know what my future holds. I still don’t know how this will end up.
But while I’m here, I’ll continue to support and cheerlead the ones coming up under me that are newly diagnosed and need my story to relate to, feel seen by, and be encouraged in.
I have to find a purpose in this story.
So, I’ll keep seeking that — and sharing, and hoping, and healing.1
Hi, I’m Nell. First, I’m a wife and mother, and a believer in Jesus. I’m also a writer of words, maker of art, and chronically ill warrior. This space is where I document this one big beautiful and flawed life. Essays and diary entries, poetry and art, and peaks into my heart. Welcome.