Reflections on a mindset… and a new way forward

I remember when I was first sick. After 9 months of full time mystery solving, I’d finally tested positive for an illness that would explain the myriad of different health conditions that had taken hold of me in 2014, rendering me homebound, profoundly disabled, panicked and traumatized. Finally I had something specific to fight: Lyme disease. Sure, “Lyme disease” is shorthand for multisystem immune deficiency syndrome (MSIDS), a complex condition that actually leaves you battling multiple infections and sources of bio toxin overload at once, but at least it was a singular direction to work in!  And a singular direction sounded a whole heck of a lot better to me than the previous working theory of most MDs I’d seen: That I was simply a very unlucky young woman with a history of migraines, arthritis, plantar fasciitis and multiple sclerosis who also managed to contract 12 unrelated devastating chronic conditions in one year.

In those early days, while I waited to see my first Lyme-specific doctors, I prepared. I built my herxheimer kit, I made a list of the foods I’d stop eating, I implemented a safe sex protocol for my long-term partner (who exhibited a number of symptoms similar to mine, but found no interest in seeking his own answers). In short, I found every single type of armor I could possibly strap onto my fragile little body, and I drew lines between “safe” and “unsafe”.  I geared up to fight. 

In months 1 and 2, the fight was underway. And boy did it feel like battle – it’s true what they say, treatment makes things much worse before it makes anything better. In my 3rd month of treatment, I doubled up on my approach to wellness. In addition to antibiotics and herbs I was using to attack the infections under the care of an LLND, I visited LymeStop in Idaho for a form of magnet therapy that so many were swearing worked well for them.

Whilst on location in Coeur d’Alene, Idaho, my then partner and I strolled through the natural food store in Idaho, which we’d driven an hour to find. I scoured the shelves, read each nutrition label twice and filled our basket with foods that mapped to my precise specifications of “safe”. As he tossed food into his basket with comparative indiscrimination, he casually pointed out a simple fact that had already been festering in my thoughts, “You know, if you start to get better after this magnet therapy, you’re not going to know which treatment helped.”  

“I know,” I grumbled back in defeat, frustrated that my desperation to get well was leaving room for any ambiguity in my life. 

“It will probably be good for you to not know,” he responded as he picked out bread for himself.  

I shot DAGGER EYES into him. How could someone who claimed to love me so much wish me such an incredible source of discomfort?! Didn’t he know how important it was to me to have precise measure over this struggle of mine?? And how much anguish and frustration this uncertainty would introduce to my life?  

This simple exchange in the grocery store left me feeling really alone, confused and… you guessed it… unsafe. It also turned out to be one of many fraught discussions he and I would have about my fight against Lyme disease.

One of the most painful points of contention we hit most often in those discussions was around certainty. He would often say things like, “…Lyme disease, if that’s even what you have,” and I would get SHAKING MAD at him for questioning my narrative. I felt that him questioning the specificity of my condition meant he didn’t grasp how sick I was, didn’t comprehend how violated I felt by decades of missed diagnosis, how afraid I was of losing my physical abilities, my mental clarity, my emotional health. How well he really did understand those things (or not), I actually don’t know. But one thing is for certain, he didn’t understand that challenging the nature of my illnesses introduced ambiguity around the only clear path I saw to wellness.  And that scared the SHIT out of me. 

Indeed, my entire sense of safety had become tied up in knowing with certainty what was wrong with me, and in clinging to the rigidly defined path that would get me all the way well.  

Fortunately for me (unfortunately for that relationship) my rigid dedication to the path actually did work pretty well. Over the course of nearly 2 years, the combination of antibiotic treatment, LymeStop, and lifestyle changes got me damn near symptom free. In fact, the only symptom that remained 2 years in was my ringing ears. And in early spring of 2017, my Lyme doctor began to wean me off treatment.  

As most of you know, things got cloudy about 6 months later. By August of 2017, I was back in the thick of the fight. Only trouble is that so many things happened at once and, as the picture of my health has gotten infinitely more complex, I realize I don’t know what I’m fighting exactly. At this moment, I am living with effects of Lyme disease, Bartonella, the usual latent viruses so many of us live with, active Hashimoto’s, a recent multiple sclerosis lesion on my spine (my first since about 2012), possible toxic mold exposure and inflammatory back pain that may or may not be caused by a mildly bulged disc in my spine. And I can’t make sense of the borders anymore. I can’t tell where one stops and the other begins. I don’t know if one issue is the “big” issue, or if unraveling them all would require a specific ordered approach. And, most challenging of all for my formerly rigid, safety seeking self, I don’t know how to protect myself from future damage. The list of things to be wary of has become too long to adequately mange: ticks, fleas, human sex fluids, heavy metals in my food, in my tattoo ink, in my dental work, old buildings, new buildings, leaky buildings, second hand shops, sitting, standing still, bending, twisting, lifting….  it’s too much!! 

My Lyme doctor in my last appointment used the word “fragile” to describe me as she suggested I stay out of all buildings I can’t test for mold. My face scrunched up in disgust at the thought of living with that level of fear… of standing outside shops and homes of loved ones alone and afraid. And I realized in that moment, I am not the woman I used to be.  I am revolting against a life focused on seeking safety. 

After two and a half years of what had started out as unwavering dedication to my exact story and my rigid path, I can honestly say I don’t crave answers anymore. I don’t crave certainty, I don’t crave rules to follow. I don’t believe I am fragile. I don’t even really think of myself as sick anymore. This is my body… this is my life… and this is my struggle. And it’s changing me to be a better person.  

I surrender. And that’s my favorite word right now. Because I don’t see this as loss, I see this as letting go. I don’t want to FIGHT anymore. I want to flow.  I want to release. I want to BE.  

Longtime readers, please don’t misunderstand me, I am not giving up on a quest for health. I am not quitting treatment, I am not eating indiscriminately, I am not carelessly allowing risk into my life. But I am switching perspectives. You see, if you’re fighting something, you either win or you lose. And with the number of unique challenges going on in this corporal form of mine, I can’t “win”. This will never “end”. There won’t be a big conclusion. Or, if I’m speaking honestly from my spirit, this IS the big conclusion: The struggle will never end, but I will find my home within it.  

And the tears flow as I write that because I feel released. And the release is beautiful.  

In this moment, I am infinitely grateful that THIS struggle came into my life. Before I was sick and throughout the worst of my health struggles, I had found safety in certainty, control, and a finite life. And I am a stubborn motherfucker. I wasn’t going to let go of that perspective easily, so the universe, or God, or whatever collective consciousness it is that envelopes this human experience, in its infinite wisdom, it CHOSE this unwinnable lifelong challenge for me because this is exactly what it would take for me to get down on my knees, turn my hands up to the heavens and admit “I don’t got this… I am at mercy… show me what I need to know.” 

And when I ask THAT question, this is what I come to: My life is not meant to be struggle, control and fear, my life is meant to be surrender. And in surrender, I find peace and beauty and gratitude.  

The change feels like it’s happening all at once now, but the truth is, it’s been gradual. Once I found relative wellness in 2016, the shift started  in small practicalities – occasionally trying a few foods I normally strictly avoid. Testing positive in a urine culture for mycotoxins and not immediately tearing my life apart looking for a mold source. Falling into bed with a man who lit my soul afire and paying more attention to the way his hair wraps around my fingertips, the way his muscles flex and release, the way his arms envelope me than I did to where exactly every drop of our body fluids land. It was so slow, and so natural and so easy that I didn’t even notice I’d strayed from my original fighter’s plan. 

I didn’t notice it, that is, until I fell ill again in August. When I got the news of the new MS lesion, the news of very serious relapse, I looked at all the beautiful freedoms I’d slowly introduced to my life and I lamented. I lamented because my automatic subconscious thought was that I’d have to return to my rigid guidelines and my finite definitions of safety to get well again. I’d have to cut out every even remotely “bad” food, spend every night in a detox bath, stand sadly outside of used book stores….. I listed the rules I’d have to go back to and I felt ACUTELY the losses that come with those choices. The loss of freedom, the loss of possibility, the loss of wonder… the loss of inhabiting the spirit side of my life. Spirit, you see, doesn’t dwell where fear lives. And I thought I’d have to move back into fear.

At first, this inclination not to FIGHT surprised me. I worried that I’d lost stamina for the battle. I worried that NOT wanting to give these things up meant I was giving up my desire to be well. I fell into sobs of wondering how I had become so weak in the face of this relapse. I wondered if I didn’t love myself enough anymore to prioritize my rigid path once more.  But I see now that I am embracing things as they are and resisting not the effort for wellness, but resisting life in fear. The truth is, I cannot protect myself from every possible risk, and if I tried to do so, I’d miss some of the most beautiful moments of my life. And I am done missing the beautiful moments. I am done missing delicious dinners, I am done missing beautiful hikes, I am done missing incredible bike rides, I am done missing possible great loves.  I love myself enough to CHOOSE those beautiful moments even if they come with uncertainty.  

And so I will not walk a rigid path. I will not make lists of foods that are bad. I will not stay out of buildings full of art, and mystery and intrigue. I will not cover every lover in a list of rules and precautions.  

Life from here will be not a fight, but a long walk along a balance beam. There will be challenges to make me wobble. Shit, I may hit a few big enough to knock me down completely. But I will have the tools I need to get straight again… and they are just that: Tools. Antibiotics, herbs, mold tests, clean diets, cleansing detoxes, deep breaths, prayer, gratitude, meditation. Not an arsenal of weapons, but things to help me find my way back to center. I’ll use more when I need more, and less when I need less. And sure, living life on a balance beam may mean I walk a bit slower and more deliberately, but it also means I’m going to soak in every moment with a level of presence and awareness I’ve never had before. And gratitude.  

Bottom line is: I want I inhabit my life. I want to show up to every possible encounter on this beautiful blue dot with a heart that is open and curious about possibility. And the only way for me to do that is to drop the armor, spend time on my knees, and relinquish the notion that I am in control of any of this.  

I am not in control.

I am in constant danger, as much as I am in constant safety.

And my life is beautiful, exactly as it is. 

bikini

 

A NOTE TO READERS: My relationship with this blog, and my #KarlafightsLyme hashtag on Instagram has become a bit challenged. My initial intention was to record progress, to report monthly, to make an exact list of things I’ve done to get well, and to pull others along with me down the path to good. Things have changed inside me, and this entry is an attempt to convey that. My path is my own, and it isn’t going to have any big conclusion. I don’t want to measure it anymore, or really track it beyond what comes naturally to me. But my passion for connecting with others walking in these woods is very real. And I will always share any of my wisdom with those who seek it. I am hopeful this blog will remain a place of doing that, but I am unsure what form that will take as the old monthly updates no longer serve me. Please be patient as I move through this period of transformation. And if you have suggestions, requests or ways you find my entries helpful for you, please share! It would be really wonderful to lose the yardstick aspects of this space while keeping all the richness of connection.

 

All my love. 

-k 

 

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A Lymie’s first relapse… ?

I have practiced what my therapist and I jokingly call “radical acceptance” diligently for a couple of years now. And I’ll tell you what… it took every ounce of “radical acceptance” type energy I have within me to type that word: Relapse.

Just two months ago, I was excitedly sharing the news that I was tapering off of meds and entering a stage of my life faaaar more free of doctor’s appointments, high medical costs and strange, evolving symptoms of late stage Lyme disease.

But, as fate would have it, my work seems not quite done.

Things happened slowly at first, and perhaps in disguise. You see, on June 5, I’d strained my low back thanks (I thought) to the combination of a minor bike accident one day and a kettlebell class the next morning. No big deal, it’s an injury similar to those I’ve had before. Only, it lasted a LOT longer than it had in the past. I spent a couple weeks flat on my back in spasm trying to enjoy the whole muscle relaxer and pain-killer routine. Once I was able to get upright, I unknowingly turned to a bunk chiropractor illegally claiming to offer physical therapy and, disappointingly, I seemed to prolong my recovery with exercises far outside my range of capacity. Under his care, I left the familiar ache of a strained muscle and moved into ongoing back spasms with painful, cramping sciatica running down my legs.

After 5 weeks of backwards and forward progress that seemed to be getting me more backwards than forwards, I left the bunk chiropractor. By mid July, I had a proper physical medicine doctor, an MRI, a standing desk at work and a physical therapist who really knew what she was doing. My scans had shown a mildly bulged disc at L5/S1 which is an incredibly common “normal human” injury, so I set myself on the right road to recovery and didn’t think anything of it.

A month later, on August 17, I woke up with a spasm much higher up in my back – stretching across both shoulder blades. I immediately blamed it on a Rancid concert I’d attended the night before. Perhaps women in their mid-thirties aren’t cut out for headbanging?? I rolled on my lacrosse ball a few times and trusted it would loosen right back up. And it did, mostly. But two days later, on a longer than usual drive to Bonney Lake, I noticed tingling in my feet while driving. In fact, I discovered after curiously exploring the new symptoms for the rest of the drive, that I could cause myself to feel tingling from the waist down simply by moving my chin toward my chest. I arrived at my brand-new fella’s place rattled and afraid. I had debated the whole way down about how much of this to let him see. Upon arrival, I mentioned it as casually as I could manage, and we shared a look of concern. Figuring it was part of my existing apparent back injury, I made promises to update my current team of doctors. His positive attitude, his cute smile and my excitement about a short bike ride we had planned for the day inspired me to ignore things for the time being. After all, this was my first time on two wheels since the supposed disc injury forced me to drop out of my training for the STP. AND I was riding bikes that day with a boy I liked? Very little could’ve kept me in the realm of fear.

The next day, things were a bit worse; the tingling was almost constant and now only worsened with the chin-to-chest move I’d been playing at since its discovery. Eager to get a move on toward full activity and bike training again, I emailed both doctors who’d been working on my injured disc (my primary care doctor and that brilliant physical medicine specialist); I described the tingling and asking what they wanted me to do next. I was a little surprised when they each separately referred me to a neurologist. After all, wasn’t this SOOO obviously just an extension of the totally normal human spine injury I already had? I chalked it up to them being overly cautious. After all, at the time of their referral, I didn’t have any other symptoms that would cause concern, so I happily continued my days with my vision focused on recovery from these (now multiple, I’m figuring) spine injuries. Of course, I spared a little vision to focus on my budding new romance. 😉

Over the next week and a half, things with the tingling started to get better. The pins and needles were back to appearing only when I folded my neck, thank GOODNESS. But a few other oddities had started to catch my eye. The new ache in my knees were making it hard to do the hip flexor stretches my PT wanted me to do. At least some days; other days my knees were totally fine. Weird.  Then the pain in my feet I’d attributed to the drastic increase in standing at work kept happening even while I was on vacation, spending a lot of time at rest. Yet the aching seemed to be getting worse. Hmmm. Then, persistent numbness crept into my toes. Brief periods of cool temperatures and sensory loss started happening around my nose and mouth, as well as occasional, quite painful aches in my ribs that came and left on a schedule all their own.

A quiet, but disturbing little voice deep inside me started gurgling with messages I wasn’t yet open to acknowledge outside a few whispered admissions to very close friends.

Then, over Labor Day weekend, which bookended my 1.5 week vacation from work, the gurgling voice found more ammo for its argument. I didn’t go lightly into doubting my remission, you see, oh no. I had to be knocked right over the head with warning after warning.

Saturday night of the long weekend, I packed everything I needed plus my two doggos into the car for our now sort of familiar trip down to Bonney Lake. We did a bit of dinking around my gentleman’s country homestead, and then the whole group of us retired to sleep for the night. Only, I woke about 3am with pain in my hips and back so fierce I could hardly stand it. I crawled out of bed trying not to disturb my partner or any of the 3 dogs we collectively care for. I lay down on the living room floor with only the rhythmic sound of the ceiling fan and that gurgling voice to keep me company. (The two were in lockstep rhythm together: Relapse? Realpse? Relapse?) About a half hour of stretching later, I felt ready to head back to bed… blaming things still on this (these?) pesky back injuries. I wasn’t as successful at sneaking back into bed, though, and I found my man awake to greet me. He sweetly asked what I’d been up to and I reluctantly shared that I was in a bit (heh) of pain and had gotten up to stretch. He comforted me by wrapping his big, safe arms all around me and for a moment every simmering fear quieted. Until my muscles started jerking. Violently.

Myoclonic seizures are brief, shock-like jerks of a muscle or a group of muscles. Healthy people will recognize myoclonus in the form of hiccups or a sudden jerk that may wake them up as they’re just falling asleep. But for me, these muscle jerks continue one after the other in different parts of my body for a comparatively long period of time. On this evening, they lasted for well over an hour. It was my first set of these since I was VERY sick with Lyme disease in 2015.

My partner kindly and patiently suggested every possible “normal healthy human” reason he could think of for the night’s unfolding. Maybe I was dehydrated. Maybe I was stressed. Maybe we’d done a little more activity lately than my still healing disc injury (injuries?) were ready for. I wrapped my fingers in his long hair and, listening to his soothing justifications, nodded myself right back to sleep.

But there was no arguing, the voice was louder now: Relapse, relapse, relapse.

The next morning, we slept in FAR longer than I normally would have. We woke up with a couple cups of black coffee. And, skipping any form of breakfast, we packed our bags for the beach. (Regular migraineurs will recognize my rookie mistakes here.) Just as we began to pack the car with blankets, towels and extra water, my central vision was lost in both eyes, replaced with dancing, shimmering zigzags. I slowly closed one eye, and then the other, peering around my man’s beautiful property assessing the new events. I smiled at him. “We might have to delay our departure a bit, babe,” the zig zags engulfed most my sight now and the shapes of his face danced before me, “I am not able to see right now.” Having had migraines regularly from the time I was 10 until 17, and again the whole time I was sick with Lyme, I explained to him that I’d be ok in about half an hour. He walked me into the house and laid me down under my familiar ceiling fan and prepared me a cold glass of electrolyte water. (His “you might be dehydrated” theory continued, it seemed; I admired his positive attitude).

Sure enough, within half an hour, my vision returned. The bright, shining zig zags were replaced with a mild but domineering ache in the front of my head. Determined not to let my poor stretch of health ruin our fun plans, we headed off to the beach.

The cold glacier water on the hot summer day was nothing short of refreshing. After a few hours splashing around in the lake, laughing and telling jokes, my muscles were more relaxed, soothed and loose than they had been in weeks. The rest of the day passed without incident and the next morning, I drove home alone to my place in the city with mussed hair, dirty feet and a full, happy heart.

Then I took a nap.

I had trouble waking. And in moments of brief consciousness, I wondered things like, “Where am I?” “What day is it?” “What’s been happening recently and where am I in the timeline of events?” For healthy folks, this might happen momentarily following deep sleep. For me, even after fully waking, this delirium lasted close to an hour and a half. I tried really hard not to panic, recognizing logistically that this was my home, and that I had a list of chores to do. I texted a good friend who had helped me through these moments years ago. He understood my swiftly rising anxiety and reassured me that everything was real, sharing details of the weekend and my recent trip down the coast. He told me he was there for me no matter what. I listened and I sobbed a little while I chopped vegetables. I’d recalled that doing visceral tasks like cooking always helped bring me back around in years before.

By this time, thanks to the resurgence of derealization (the scariest symptom I’ve ever experienced), the voice in my head had raised in volume so drastically it sounded like shouting: RELAPSE. RELAPSE. RELAPSE.

That night I told my close girlfriend and fellow Lymie, for the first time with certainty, “I’m relapsing”.

“What are you going to do?” she asked.

And I told her without enthusiasm, excitement or curiosity, just matter of factly, “I have a plan.”

And a plan I do have. After all, I wouldn’t be Karla Sue Margeson if I weren’t steadfast, pragmatic and capable of surviving just about anything. This is what I do, right? Grin and bear it? Figure it out? Save the day?

First, I’m going to follow through with the recommendation to see a neurologist, and we’re going to get an MRI of the rest of my central nervous system. I will listen, I’m sure, as he ignores my positive Lyme tests and tells me I have MS. New lesions on my spine and or brain will confirm, to me at least, that the neurological Lyme disease has reactivated. Then, I’ll have to figure out why. First, I’ll do that new DNA Connections test to see if I missed a co-infection during my first years of treating. Then I’ll mold test the new buildings I’ve been hanging out in and see if maybe I got some more toxic mold exposure suppressing my immune system. And finally, I’ll look into primary immune deficiency – something like Common Variable Immune Deficiency – caused by genetics that may be keeping me from fighting latent infections off. Something in there will explain why I haven’t stayed well more than a few weeks while tapering off antibiotics.

I have lists of doctors to see, of tests to ask for, of things to spend money on and appointments to keep.

I can’t help but recollect with a little sadness the first time I went through this, how excited I was for each stage of pursuit. How sure I was of my ability to get well. How much I anticipated each piece of the puzzle coming together. Fully engulfed, I ran from doctor’s appointment to doctor’s appointment, I scoured the internet for articles, I poured over scientific studies and I begged to meet with anyone who had a theory about what went wrong or how I might go about correcting it. I altered my diet, I prioritized my sleep, I spent evening after evening in my detox bath. My ONLY pursuit in life was wellness.

How different that was from what I feel now. I am tired beyond measure. I am reserved in hope. I am reluctant to move forward. I am beaten down. I don’t want to give up the little bit of sugar I’ve been enjoying. I don’t want to spend every dollar I have on medical bills and supplements. I don’t want to spend my nights in the bath. I’ve been doing that for YEARS. I’ve been giving up fun and indulgent things for YEARS. And I don’t want to do it anymore. I just want to ride my bike, and hike, and swim, and camp, and get through my days at work… I just want to fall in love and visit with friends and talk about normal things when my big sister calls to ask me what I’m up to. I just want to live a NORMAL life.

For the first time, I am tempted to ignore symptoms. To ignore my own logic. To even accept the rationale of doctors who would tell me I “just have MS, and fibromyalgia, and CFS, and thyroid disorder…and and and

It would seem I am lacking my usual fight. And instead, I have adopted a slow, significantly strained but still practical path. I know what steps I need to take. I even know exactly how to take them. I just have to muster the courage, the energy, the thousands and thousands of dollars, and the time carved out of the rest of my life and just do it.

I will do it.

I will fight for my health again.

I will unlock new pieces of information.

I will put this stupid, ugly, no one asked for it anyway puzzle together.

And hopefully, somewhere along the way, I’ll find new reserves of hope and strength.

 

My motto, for now, is simple: One step at a time.

 

Alternate reality: What if we chose all this?

A guy I know once told me about this theory his shaman shared with him. (Yup, his shaman.) The shaman said that before we’re born, we actually choose the life we are going to lead, based on the challenges we want to face and lessons we’d like to learn. Right down to every detail, we know exactly what we’re getting into. We asked for each thing, explicitly.  We gather everyone we’re going to know or interact with in that life, and we tell them exactly what we’re choosing, what we want to learn, and how we hope our earth self will handle it. The shaman suggested that this is a thing we perform over and over.

I immediately loved this idea. It flooded me with a sense of relief and inspiration. And I’ve been pondering this reaction to the idea ever since.

This morning it hit me: This idea gives me agency. False agency, perhaps, but agency nonetheless. I really like the idea that in this shaman’s reality, I sat down and deliberately chose everything about my life. I can picture myself there in a room of familiar faces describing what I’m about to do:

“Alright, you guys. This is going to be an adventurous one! I’m going to have this rich, artistic, chaotic, warm and loving first few years of life, full of color and music and love. Then things are going to get rough… in like… a lot of different and super difficult ways. There’s going to be family difficulty. There’s going to be really serious, mysterious, shifting and long-lasting illness. There’s going to be these super challenged romantic relationships. There will be huge financial burden. Shit, I’m going to lose absolutely everything right there in the first third of the experience. There’s going to be so much internal strife and frustration and longing. I chose these predicaments that are going to make earth me feel really desperate, afraid and alone. I’ll have a lot of success and do a lot of fun things, but I’m also going to really suffer. And I’m doing this because I want to learn to detach from expectation, transcend minutia, practice being really present and accepting, and get really good at cultivating gratitude. I want to find richness in the difficulty. I want to feel strong, powerful and resilient. I want to be unbreakable… not because I overcame these things… not because I wasn’t broken… but because I learned to live in brokenness, celebrate my humanity, and find beauty right there amidst all the pain.

You guys are going to have an interesting time with this one too. Some of you won’t know how respond to me. A lot of you won’t know what to say. Some of you will want to fix everything all away… the reality will be too hard for you to sit with. A bunch of you will be like ‘what happened now?!’ about a hundred times throughout this life! It’s not going to be easy to handle this earth me. I’ll be complex, sensitive, cautious and afraid. But some of you will be drawn to me. Some of you will relate. Some of you will like how raw I will become, how open, sharing, and expressive. Some of you will, like me, find strength in the act of standing naked and unarmed, wrecked in the face of a cruel earth yelling defiantly ‘I’M STILL HERE’. Either way, I believe this pursuit will be a beautiful expression of humanity, a radically entertaining adventure, and full of opportunities to grow in ways other life story lines just wouldn’t support. Thanks for being in on this one with me. Let’s do this.”

I’m pretty sure at the end they all do that thing where you put your hands together, chant something inspirational and then yell BREAK and shoot down to earth so the adventure can begin.

It’s a fun fantasy. And beyond giving me a sense of agency, choice, and control it also makes me want to rise to the occasion, to greet difficult experiences with openness and to appreciate the opportunity. It makes me want to strive for the goals that would-be spirit me set out to achieve.

Anyway. I enjoyed pondering on this concept this morning. Would love to hear how this idea strikes you! And what you think spirit-you might’ve been thinking as they came up with your set of experiences and realities, what they wanted to learn. If you’re inspired to, please reach out to share your thoughts!

Cheers,
k

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Treatment Recap: Months 23-25

Time flies when you’re having fun! I have been updating the blog a lot less lately because I have been out ENJOYING LIFE! For the last 3 months I have been riding my bike, lifting weights, dating, playing with girlfriends, and enjoying the magic Seattle summer.

Indeed, I seem to have my feet planted firmly in wellness these days. At my last doctor’s appointment, ending month 25 of treatment, we went through my list of symptoms. Just one left: Ringing ears, which I have had consistently since fall of 2014 and just consider permanent damage. I’ve accepted this, deeming my wellness complete. I am happy to live in this state of health forever.

Sure, I have a few things that could be Lyme… maybe. My eye twitched a little last week. My sinuses are often swollen and itchy. My eyes are kinda sensitive to the florescent lights at work. After a REALLY intensely cognitive day, I struggle to think of the right word in conversation with friends.

But none of these things are ever consistent, they leave as fast as they come, they improve with rest / change of circumstance, and I hear my normal human healthy friends complain of the same types of things all the time. So, I don’t really think these are symptoms of anything, except symptoms of living in a human body.

Part of this, I’m sure, is due to the fact that I started a new job recently. The days are LONG and hard and full of learning. I have a new commute, I’m getting to know my teammates, I’m learning a new part of the Microsoft business, I’m figuring out all the processes and rules and documentation, I’m navigating the maze that is my new building and broader campus, I’m working 50-hour weeks solving complex business problems with people who are much much smarter than me and it is… intense. The very fact that I am able to do this is testament to me of my healing! This wouldn’t have been even a remote possibility just a year ago. But I do notice the worn-down sensations in my body come 6pm.

I’m sensitive to any change in my body. The truth is, I’m scared. Because all of a sudden, I have this life I’ve been dreaming of… I have the kind of life I wasn’t sure I’d ever see again. It’s here and it’s staying and it’s time. It’s time to embrace that, to say out loud I am WELL and to start weening off meds. And that’s scary. I’m scared it’s all going to come rushing back, and that I won’t be able to stem the flow, and that I’ll be lost once again… perhaps not to be reclaimed. And so, I notice every little thing my body/mind does that doesn’t seem quite right. I notice, and I measure.

And although I am scanning for issues often, I don’t live in fear. (Thank you therapy.) I live in acceptance. I live in now. But “now” is complex. I live in this body that’s been through a lot. I live in this mind that finds everything hard to trust. I live with the hard truth that I can’t possibly know whether I’m going to get sick again. I live with a conscience that means I look in the eyes of guys I want to let myself fall for and say, “I don’t know how this is going to turn out.” I live in a heart that has a hard time asking them to love me anyway. I live in mourning and shock, still… of everything I went through.  I live in awe of all the possibility laid out in front of me again.  I live in a body that wants to stretch, bend, flex and MOVE. I live with a sprit that wants to chase every challenge and conquer it completely. In moments, I dare to live in hope that I will get to experience all the dreams I am often too afraid to even admit I have.

I think most people expect me to be purely elated that I am well now, and… I am. I really am. On the days I’m on my bicycle with wind in my face and miles of road stretched out ahead… I often tear up with gratitude over everything given back to me. The freedom to experience the full capabilities of my body and my mind… the steadiness of my emotions and the consistency of living day after day in a body not routinely thrown into new and troubling states of disarray… it is EVERYTHING to me. But every time I feel that gratitude, every time I notice how great everything is, there’s a quick second experience that’s heavy, dark and horribly sad. There is a deep pain over the amount of suffering it took to get here. Over everything I lost. Over everyone I know still suffering. Over the complete lack of support we have. Over the invisibility of this fight and this condition. Over this heavy shit and ever present fear I have to carry forever now.

But I will focus on the bike. And the wind in my hair. The steady love of my few good girlfriends. And the beautiful eyes of curious boys.  And I will live right here, right now, in wellness.


For those wondering what treatment ahead looks like, a good friend of mine put it beautifully when she said “welcome to the balance beam.” I am well now, and the only question left is, what will it take to stay here? So over the next 6 months, I will taper off prescription antibiotics as much as I can, with an aim to transition completely to herbs. I plan to keep my diet pretty clean, but might sneak the occasional cocktail. I plan to get rest, exercise, and just try to walk this line of health. And as time and experimentation go on, I’ll find the right combination of “things I do” to preserve me here in good health. I’ll keep everyone posted as often as there is news!

Wishing you ALL happy healing.

-K

How am I treating? No single thing has gotten me well. Here have been my main areas of focus:

  1. Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Bartonella.
  2. For several months, I used 1 scoop of Cholestyramine twice a day to deal with mold exposure from my ill-fated home purchase in October 2016.
  3. I follow a dairy/egg/gluten/sugar/caffeine/alcohol-free diet. I eat paleo type meals for my “core” meals, but I do also eat things like rice, beans, tortilla chips, tacos, Thai food and the occasional vegan / gluten free pizza when I’m dining out with friends.
  4. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, I let go of a romantic partnership that wasn’t supporting my healing, and I made a strong investment in a positive social network (online and off).
  5. In month 3, I did LymeStop in Idaho in addition to my antibiotic therapy. while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later. I did not take any of the LymeStop supplements.
  6. In January 2016, I had my 23andMe results analyzed by Bob Miller. And although  I discontinued his supplements, I had been on them for the entire year of 2016.
  7. In June, 2017, I began working with Samantha Gilbert who designed me a diet and supplement plan to optimize my genetic expression for health (namely addressing undermethylation and copper toxicity).

Making a run for a comeback 


This is a milestone I’ve been counting days toward for YEARS now. I got that barbell in my hands… and I fought back tears of joy. 

Presses, KB swings, planks and pulls ups. Some running, and barbell thrusters for extra work. Holy cow. Is this real life??
Treatment works. And wellness is… it’s sweeter than I even dreamed. 

This is everything. 

Battling Fears in South Dakota

Well. I camped in a big grassy plain known to have ticks. I took precautions – I wore my socks pulled up, I sprayed my feet with deet and I did tick checks often. And I didn’t get bit (that I can tell). 

More importantly, I didn’t let my fear ruin my good time.

This is a big moral victory for me.

Lyme is a huuuuge hit to the psyche. Getting as sick as I did physically, mentally and emotionally; falling through the cracks of our medical system; being told I was crazy for nearly a year while I became more and more disabled; getting saddled with an incurable disease that regular doctors can’t treat, that there’s no clear treatment guidelines for, that insurance doesn’t really help with and that costs me $25k a year out of pocket; being unsure of exactly how I got it, whether I’ll recover, how to get well or what I can do to stay safe; and living with unanswerable questions about what this means for the choices I make in my life about where I can safely live, who I can safely couple up with and how I might one day build a family.

Lyme disease is straight up trauma. And PTSD is a real thing.

Along with working to get well from Lyme + co. itself, I’ve worked really really hard to “recover” from the trauma of getting sick with Lyme. But a little voice lives permanently in my head now telling me I’m unsafe, and that at any moment, everything that means anything to me will unravel.

But that voice didn’t win this weekend.

And that’s another weekend I got to live in wellness AND joy.

Lyme Disease Awareness Month

Happy Lyme disease awareness month!

Look what I was doing two years ago today…

Crazy, right?? I am amazed it’s only been two years. It felt like a LIFETIME going through it. And here I am, darn near remission. I am SO grateful. 

If you’re looking for ways to celebrate the month, head over to my new Karla Fights Lyme Facebook page. I’ll be sharing awareness images every day this month that you can easily pass on to your own network. 

Sending you all wishes for happy healing!

-k