It’s the last day of Lyme Disease awareness month and to be honest, I’ve been avoiding it. Every year that passes since my diagnosis is more complex and harder to articulate. But here I am at the last minute with something to say:
Chronic Lyme is REAL, and this is what it looks like.
Not pictured: hundreds of thousands of hours of research, blood work, integrative medicine, functional medicine, IVs, surgeries, allopathic medicine, hospitalizations, biological medicine, homeopathy, herbals, naturopathy, Chinese medicine, PT, chiropractors, acupuncture, craniosacral, massage, myofascial, targeted detox therapies, strict diets, neurofeedback, brainwave optimization, lymphatic drainage, photobiomodulation, visceral manipulation, infrared therapy, PEMF, ozone, neural retraining, genetic testing, methylation treatment, nutritional counseling, therapy, trauma work, medical marijuana, energy healing, somatic work, mold and EMF remediation, dental appliances, meditation, essential oils, prayer, gratitude journaling, complete lifestyle overhauls, blood sweat and tears, and more. SO much more.
Almost entirely out of pocket.
It’s insane that late stage Lyme requires you to drain bank accounts to gamble with treatments as a medical guinea pig. There aren’t words to describe what its like to have to fight for care and battle blatant ignorance in the medical industry while seriously ill with potentially lethal infections.
I promised myself I would do whatever it takes to get well, and I have, and I still am. For the first time in 5 years, I’m stable and have been making progress without backsliding. I’m grateful and hopeful, and yet, healing is still a full time job and I’ve already lost a decade of my life to these diseases.
It shouldn’t be like this. We need so much more than just awareness. We need reform. Accurate testing, funding, research, effective treatment, acknowledgement and support. And a massive apology from the CDC, for starters.
Chronic Lyme and tickborne coinfections are real, and life-altering. It's time they're treated as such.
Real talk: life has been pretty unbelievable lately. And not in the way I'd hoped. The past 2 months, I've been handed a steady stream of unfortunate events. 2 new rare, debilitating diagnoses without treatment options. A heart breaking personal loss. Gross mistreatment/betrayal from a local doctor, who was/is the only option to get a specific type of treatment I really need. Discussions about if it's worth it to sue. Plans I've been working on for months blown up. One thing that was keeping me stable, a $3k+ medical device, broke unexpectedly due to a ridiculous circumstance. Trauma and increasing medical PTSD. Less and less options to turn to. Continued reminders that friends/family often don't know what to do or say.
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Despite my best efforts, I'm isolating. It's difficult to keep sharing the hard stuff. And sometimes there aren't words. The only thing my gut tells me in times like these is to get to the only place where I can breathe easier and my chronic pain lessens: the ocean. Salt water is sacred to me; it's where I go to recenter when life is too much. Flights were booked and the promise of relief was the only thing keeping me afloat. Until we got to the beach, immediately started coughing, saw the washed up dead fish, and later learned that the gulf coast is experiencing the worst red tide in years. The last thing my immune system/body needs. Since then we've scouted every other beach in the area only to come back with burning eyes and throat. Our only choice now is to drive 4hrs each day, something that makes my pain worse. Tbh, added to the last decade, this not being able to catch a fucking break thing is getting old. I know I will find a way to climb out of all this, but rn I'm worn down. Pls send thoughts/prayers that something turns around soon, or pictures of puppies if you got em 🙏🏼 or better yet, bring one over to visit me and I'll love you forever pleasethankskbye
Part 1: Two weeks ago today was my most treasured day in Costa Rica. We hiked 4k uphill, in the mud, to see one of the best falls in CR. And after a particularly steep part, ugly happy tears just started pouring out of me. Because for the past 5 years, any amount of strenuous exercise = feeling like and/or actually passing out, or losing my vision or hearing. But here I was. In the middle of the rainforest, looking back at the hills I just conquered, muscles burning and heart pumping wildly, feeling alive. I couldn't remember the last time movement felt that free.
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Oh and 20 min later we arrived at this. So damn thankful for my legs and lungs and all the places they take me.
The tree outside my window, a few days ago, before it lost most of its leaves 🍁
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This fall has been so weird but also so profound for me. I've taken a big step back from social media for months now and whenever I do that, it usually means some significant stuff is going on behind the scenes that's impossible to articulate. I've been having a series of deep realizations and epiphanies after uncovering a pretty heavy truth. Several seemingly insignificant and disconnected things are now clicking together perfectly and I feel like I'm looking at myself, my whole life and the world in a vastly different way. This has happened before, but not to this level. It's been a strange, but oddly comforting mix of grief and validation.
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So often when we're still struggling with our health or other painful long term circumstances, after years of doing all the hard mind-body-soul work, it's easy to doubt ourselves and wonder what we're doing wrong. To feel lost. To be carnivorous for answers and relief, trying hundreds of things, hoping to stumble upon the key that will give us our life back. Eventually, after trying almost every path, things often come full circle, all the paths start to blend together into one and we realize the key was never outside ourselves. And we were never lost. Just coming home to ourselves, and losing everything that isn't us along the way. It's painful and messy, but true healing isn't glamorous, fast, or easy. It stretches us far beyond what we think we can withstand. But it's also freeing. And it's real, and it comes from within. We know more than we think we do guys. Our inner self is rich with wisdom if we take the time to befriend and listen to what it has to say. #wednesdaywisdom ✨
