Reflection: My 3 Year Anniversary with a Lyme Diagnosis

Last week was my 3 year anniversary of being diagnosed with late-stage Lyme disease (better called complex chronic illness) which includes the unlayering of what "chronic Lyme" consists of. For me, it's the many co-infections that come alongside a persistent infection of borreliosis due to an unmodulated immune system, one that has also triggered dysautonomnia and autoimmune disease.

I had no idea how complex my life was going to get. I was deeply relieved when I was finally diagnosed, but the truth is: that was just the beginning. The truth is, the recommended treatment didn't work for me.

Emerging science (from respected researchers, one being from Johns Hopkins University) has implicated that antibiotics long used to treat tick-borne illnesses actually DOESN'T kill the resilient Lyme bacteria. My current team of alternative doctors have known this, but we're still waiting on everyone else to catch up.

My disease is still under-researched and underfunded. It is still polarized and politicized.

So I stand here. Still. Three years after beginning treatment. Nearly four years after becoming disabled from a life that was deemed "functional."

I stand here to share pieces of my story. Because I want people, my peers struggling alongside me, to have hope and feel less alone. But facts are facts, and we've been left behind by our medical system.

We are our own researchers, advocates, guinea pigs. We are left with inaccurate testing. We have disbelief from doctors. We have scientific proof on our side, but we're forced into this unnecessary waiting game.

Me, and hundreds of thousands of others, are waiting for a cure. While government money gets poured into Zika, I have dozens of friends who are fighting on, pouring their money that they don't have into expensive treatments because it's our only hope for sustained relief. Despite the fear it brings... Despite the fact that we have no guarantees... Despite the fact that untreated Lyme is tied to the more *publicly viewed* serious diseases of MS, Alzheimer's, Parkinson's, and ALS.

I still believe I am healing with the help of my team of doctors. I credit holistic medicine. I can function at higher levels - and do more than ever...

But it doesn't mean that many of my days aren't spent underneath my covers in the dark (literally and figuratively). It doesn't mean that my unrelenting symptoms don't force me into the ER, like they did last night.

But I believe in healing. I believe in change. I believe things will get better. I have to.

Coexisting with Chronic Pain

There is a quote I've been thinking about a lot the last few days:

"Pain is always new to the sufferer, but loses its originality for those around him. Everyone will get used to it except me." - Alphonse Daudet

I've learned to navigate some parts of my life while living with chronic pain and other symptoms, but I don't think any of us ever truly get used to it. For many, pain seems to find a way to feel new, even when it's always been around. It's surprising that way.

Mine has been here for a few years now. Some days, it's just louder than others.

It creeps back in slowly -- slithering through each crack in my body, all the places I've once been broken. It comes without notice. It comes unprovoked. 

"Oh. It'll just be one of those days again," I'll think. The kind of day I sink a little deeper into my corner. I'll look for distractions, but few things will keep my attention. I'll forget to text back. Or I'll cancel my plans. I'll say, "I'm sorry, but I can't today." I'll become distant. I'll disappear for a little while.

Did I do too much? Walk too far? Stay up too late? Eat the wrong thing? Maybe.

But, truthfully, it doesn't matter because even if I play my cards just right, it finds a way to return.

"This is not your home."

I can't remember the last time I didn't have pain. Maybe sometime in 2012. There are days when I can keep it quiet, but there are days when it screams.

I say, "I am not okay with you here." But it tries to stay.

"I hear you. But can you leave now? Again, this is not your home."

I hear you.

But now, I guess I need to start listening. Because this - this I know: Pain, you being here, isn't a choice. But suffering? Maybe suffering is. 

I won't let you push me back into the shadows. I'm bigger than you. I'm bigger than that fear. Bigger than this doubt.

For now, we will coexist, and I will listen. I've made space for you, but I will keep going. And one day, you'll stay, and I'll be the one who's moving on.

So you just need to know:

This is never going to be your home.

Portrait Photoshoot with Danielle Shull at Oak Harbor (Whidbey Island)

Today has honestly been a very difficult day for me. I've been both emotionally and physically challenged with my current treatment protocol, and ya know - just life and all of which it brings. But this evening, my new friend Danielle shared the shoot we did back in June on her website, along with my story.

I remember driving back on the winding roads as I wrote this little note to her, a note that she's now published:

This makes it all worth it. 
This is where it's at.
Every time we step out and allow ourselves to be vulnerable,
the magic shows up.
Thank you for allowing me to step out. I have always struggled with wanting to move past or escape from my current reality. Days like today make me feel alive again—they make me feel safe and at peace with where I'm at—even though my pain isn't gone.
You've already taught me so much in just one day. Thank you for sharing your day and pieces of your life with me.
Love,
Melissa
6/29/16

Today, my pain is certainly not gone. Today, I spent my time either on the bathroom floor or curled in bed. But you know what? I keep going. Blind faith? Some may say so.  But I keep going because I know. I know that I've been able to let go of some of the fear that's been controlling me for my years with illness. I keep going because being vulnerable and showing up allows life to work its magic for us.

See Danielle's site for the full story + photos.

Here are a few more of my favorites:

All Photography By Danielle Shull