Since I began my fundraiser roughly 17 months ago, I've had three surgeries, and an alternating protocol that has consisted of injection medications, immunotherapy, targeted prescriptions, supplements + vitamins, and herbals + tinctures...
I've also focused on chiropractic work and body/structural work for my chronic pain and migraines. I found a very affordable option locally, and this has helped me make some positive steps forward in managing my persistent (though fluctuating) pain.
But - the last few months have been rocky. I took a break from my trips to my treatment center, life plans didn't quite work out how I anticipated (oh surprise, oh surprise!), and after 4 years of consistent, and at times, aggressive treatment: I pulled back.
To be frank, this decision wasn't under the guidance of my doctors... But I was *so* burnt out on my health dictating every facet of my life. My treatments and health concerns were at the forefront of every single decision and purchase. This wasn't a way I wanted to live anymore; and almost overnight, I developed an aversion to my pills and injection therapies. So, I just kind of ... quit. Crazy, right?
I found myself in a weird place -- I have so gratefully come such a long way from where I began, but I felt stuck with my lack of noticeable progress and circumstances. Then, I got this winter's dreaded flu, and a resurgence of certain symptoms (namely fatigue and my dysautonomia) came raging back.
What I have done lately (while avoiding most of my pills and needles) is a lot of self reflection and healing regarding my mental wellbeing (more on that later)... and after a lot of consideration, meditation, and a generous donation (as much as I hate to say it, finances definitely matter when seeking treatment), I feel ready to pursue more support for my body (and mental wellness) again.
I've been very quiet online - I have a list of blog ideas in a notebook by my bed, and half written drafts that have gone unposted. My Instagram (which had been a major creative + emotional outlet of mine) is now sparsely updated. I was sick of sharing. And I was sick of consuming.
If you've inquired, and I've been a bit short or unresponsive, please know it was because I wasn't in a space where I felt I could answer. It was never personal... I just felt like I had so much and so little to say all at once.
I've worn every emotion on my sleeve for years. I've shared almost every up and down along the way in such a vulnerable, public manner. Each health update, the next plan or hopeful step forward, the inevitable disappointments, the many silver linings... all documented on the web. This helped me create a platform to help others, and I don't regret it one bit.
But I found that revealing that level of vulnerability became exhausting... and while grateful for the role of advocacy and awareness it brought forward (and the support network it created), it was no longer serving my personal path to healing.
As I type that, I wonder... will people think I'm selfish? I don't want to abandon my community. But I need to reframe it.
For the first time since I began my journey to reclaim my health, I started doing things privately. I focused on myself. I did what I wanted to do, unashamedly. I protected my own energy like a fortress because I was done. The tank was depleted. I wanted to go about my treatment (and life) the way I wanted to without everyone watching each step. And sometimes, I wanted to do nothing at all.
A good friend of mine texted me this during a recent heart-to-heart,
"I feel like I've dredged up everything from my heart and suffering that I have to offer... I can't do it anymore. But also, not doing that anymore makes you irrelevant to the community."
We shouldn't feel this way. But the truth is, without constant reminders posted online for all to see, it's easy to slip into the shadows.
But we all need to make time to disconnect. For me, that meant support groups, my personal social media sites, this blog, More Than Lyme; hell, it even meant disconnecting from the words LYME and ILLNESS. And while I don't think isolating yourself (or stopping treatment) is the "right" decision, it's a bit where I found myself. Of course, I realize ... there is such thing as balance and despite my particular brain's wiring, it doesn't have to be all or nothing.
So now, it's a better balance that I seek.
I realized (again) that I will never be "in control" of my health. I am constantly adjusting my views, trying new things, evolving, and of course - sticking with what works when I find it. My idea of happiness and "healthy" can change from day to day... So I'm finding beauty in the fact that we can define each of those things to fit wherever we find ourselves, at any given time.
Ideas evolve. Expectations change. And when we stop resisting, we continue to grow.
So where I'm at now:
I'll be heading up to my treatment center (Holistic Healing Arts) for a couple of weeks in March. The first week while in Washington, I'll be doing a series of treatments called *neurocranial restructuring with Dr. Hillary Lampers, overlooked by my main ND, Dr. Katie Dahlgren. The following week I'll be at HHA doing daily doc appts, and whatever else we feel is appropriate for how I'm testing (IVs, injection therapies, LDI, body work, acupuncture, PK/emotional work - all treatments I've found effective and even transformative with targeted timing).
I do want to say that truly - from the bottom of my heart - thank you. Thank you for all the support you've all given me along the way. Thank you for all who still check in after all these years. Thank you to those who send their love, good vibes, and prayers. Thank you to all who have donated to my fundraiser which has enabled me to continue treatment. Thank you to those who continue the #lymedontkillmyvibe (and #morethanlyme) message. And thank you to the friends I've met along the way.
I've been in a funky place, but things are getting better. The time will come when I'll feel more open and ready to share - but for now, I'm honoring what feels right. Sometimes we learn a lot by being quiet.