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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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).

Treatment Recap: Month 22

Well, it’s nothing but good news here in month 22. The knee pain and foot pain we thought might indicate a relapse in month 21 has actually turned out to be a cycling related pain! You see, my doc put me back on antibiotics 7 days a week (minocycline, Zithromax and Bactrim), and it didn’t help. What helped was taking a week off of my bike. Then when I got back on, boom, pain returned. Telling. And indeed, a meeting with a bike fit specialist revealed that my uber high foot arches and flimsy shoe choice are leaving my knee to wobbles and putting strain on the whole system. While I’m not a fan of the fact that something is off with my ride, I FAR prefer that reality to the one where my infectious load is sending me backwards. So, YAY!

Month 22 has been pretty freaking awesome. I am back to a level of activity that I barely even dreamed of the last 2 years. I’ve been doing a boot camp class at least 3x a week: Intervals and weights and a lot of cardio! I am even happy to be doing burpees. BURPEES! And on top of that, I am riding my bike at a pace and mileage that is (for me) pretty strenuous at least 3x a week. I have been hesitant to say it for fear of my body revolting against the big goals, but I am finally confident enough to claim: I am training for the Seattle to Portland bike ride that takes place in mid July. SQUEE!!!

Best of all, the sun is starting to come out after what has been THE HARDEST winter in Seattle. I think the blues I’ve been encountering lately are mostly chalked up to the total lack of sun we’ve had for over 6 months. I realize that in years past I was non-purposefully combating this with winter time vacations to amazing places like Brazil, Australia and Belize. But I’ve not done any of that since I got Lyme disease… treatment is FAR too expensive for me to have anything left over for expensive vacations. BUT the intense melancholy I’ve been experiencing has me motivated to try to save some cash for a sunny getaway in winter of 2018. Seems worth the sacrifice.

Minus the aches and pains from the bike, I was pretty symptom free this month. Official list includes:

  • Ringing in the ears (as always)
  • Plugged ears, thanks to minocycline – but oddly this eased a bit when I switched to meds 7 days a week
  • Changes in eyesight

The eyesight thing is a bit of a head scratcher. You see, I have been wearing prism lenses for about a year. But for the last month it seems, the instant I put them on, my eyes become crazy fatigued. They do NOT like wearing the glasses, even though they make everything crisper. So I’ve been going without. In this time going without the glasses, I find that my eyes organically have better, clearer times, and also really blurry times. This is how my eyes were pre-glasses too. This is very interesting to me, as I don’t know what accounts for the changes hour to hour. It does seem to correlate at least a little with my energy levels. Perhaps something thyroid or adrenal? **Shrug** I am heading back to my eye doc soon and hope for some answers. Or at least a better Rx.

For month 23 of treatment, we are heading back to what was SUPPOSED to be my month 22 treatment: Pulsing Flagyl for cyst busting. I’ll do my regular antibiotics 3 days a week one week, then a week of flagyl. Then repeat. This will open up some of the oldest and meanest Lyme cells that have burrowed into cyst form. And the antibiotics will kill them. Since I’ve been infected with Lyme since about 1992, I am a little nervous that I have a HEAVY load of old and hibernating cyst bugs. But I’m excited to begin killing those guys, and am very much hoping this will be my last phase of treatment. Fingers crossed for smooth sailing.

That’s all from here! You can catch me out and about enjoying all this wellness with my favorite past time of all: Physical pursuit.
Happy healing, everyone!

-k

How am I treating? It takes whole-body healing. Here are my 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.

Treatment Recap: Months 20 and 21

Time is FLYING! I guess I forgot to do a treatment recap for month 20?? Let’s start there.

As you can see by the indulgent emotional post, I had a bit of a hard time in month 20 in two very specific ways. You see, my doc had me start a new drug regimen including minocycline and rifampin.

Minocycline has, in the past, caused me pretty bad intracranial hypertension. And it did indeed cause that again, but to a much lesser degree than it did before. I experienced a much higher frequency of plugged ears is all. On the one hand, this is kind of amazing because in my 2nd month of treatment, only 50mg of minocycline 2x a day sent me reeling with this symptom. And now, I am tolerating 150mg 2x a day just fine. HOWEVER (and it’s a big however) I am only taking meds 3x a week. So the jury is still out for me on whether this is a herx reaction caused by die off of bacteria in my brain, or just a nasty side effect of this medication. Overall, this was very tolerable and not a big deal. It just made it a little hard for me to tell when I am around mold, since plugged ears is my usual tell.

What was harder was being on rifampin. Within just a few days of starting up a pretty low dose, I became extremely tired and SAD. And I stayed that way pretty much the whole month. I thought for sure this must be some kind of bartonella herx, but my bloodwork revealed that it was actually my liver having a hard time processing this medication. So when I went in for my appointment, my Lyme doc had me stop that one right away. No more rifampin or rifabutin for me. My body just can’t metabolize them.

Official symptom list for month 20:

  • Fatigue
  • Depression
  • Plugged ears (on mino days)
  • Ringing ears (no change there)

One thing that got much better in month 20 was my muscle spasms and pain. I fully attribute this to going back on 4 pills a day of boluoke, just as I’d suspected in my month 19 recap. If you’re experiencing muscle pain and spasm, I fully endorse this as a good option for relief.

As I started month 21 of treatment, I was feeling pretty good. My doctor had me discontinue to rifampin, continue on minocycline, and add in Zithromax and Bactrim single strength. Continuing to take those meds only twice a day 3x a week, and using some herbs continuously, I felt pretty good in month 21.

Just as I’d done in month 20, I was riding my bike 25-30 miles every weekend. I also started up a boot camp class about 3x a week. And I up my diet a little more. It felt VERY good to be getting back to myself. And being in the boot camp class, especially, meant everything to me.

But the month wasn’t without a little struggle. On my first night of boot camp, I experienced an ocular migraine about an hour after class. Strangely, I had another one a week later that happened nowhere near exercise. I suspect they had something to do with blood sugar dips, as that’s what the two incidences had in common. Strange to me that the long-distance cycling hadn’t triggered anything similar though.

In month 21, I also experienced a couple kind of stabbing headaches on the left side of my head. They felt VERY muscular, and came on and went away very quickly. I suspect by feel of hand that I have a cervical disc out of place and am awaiting an adjustment from my chiropractor. We’ll see if he agrees!

When I initially went into see my doc, I reported being almost symptom free. The headaches and my forever ringing ears were the only thing left on my list, and the headaches seemed circumstantial to me. (Of course, in addition to the plugged ears which I still believe is simply a side effect of minocycline.) I left her office making claims of being near remission with a plan to start cyst busters as my last stage of treatment.

Well, unfortunately, just a couple of days later – before I’d even sorted out my first week of month 22 meds – I started to have pain in the bottom of my left foot again. And in my left knee. And transient pain in my wrists. It seems that perhaps my two months of 3 day a week, small dose medication regimen has left me prone to a bit of a relapse.

I alerted my doctor today and she called a bit of an audible. Instead of the word “remission” our new R word is “relapse” and cyst busting is going on hold. Instead, my 3-day a week regimen of small dose meds will become a 7 day a week regimen. And we’ll try to get everything back in check.

This is frustrating and scary and I hate even writing these words. But I suppose this is just the way of things.

The official symptom list of month 21 is:

  • Plugged ears (on mino days)
  • Ringing ears
  • Two ocular migraines
  • A couple left sided, short-burst headaches that seem muscular in nature
  • Left sided foot pain
  • Knee and ankle pain, especially left knee
  • Some transient wrist pain

I am nervous to begin month 22’s treatment plan. I am especially nervous to go on minocycline 7 days a week. I am nervous that the intracranial hypertension will get worse, that my ears will be plugged on an ongoing basis and that maybe even some of that scary bad vision from the pressure of my swelling brain on my optic nerves will return. I get scared of reporting adverse reactions like that to my doctor, for fear that I’ll be told it’s a herx when I really think it’s a side effect. Le sigh. BUT. This will all be whatever it will be.

I will step back a bit onto more treatment, and hope for the best. One day at a time, as they say. Wish me luck, and swift passage through this little downturn.

17352054_639743972875820_7741603504764327648_n

How am I treating? It takes whole-body healing. Here are my 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.

Treatment Recap: Month 19

Month 19 is a wrap! It was kind of a mixed bag, this one. But overall, a win. I am happy to report that month 19 got me back into a solid routine. With the exception of a couch I’m still waiting for, things are nicely set up at my new, low mold apartment. I have a functional kitchen so I can meal prep again. I’m walking to and from work again, which does wonders for my body and my mind. And, frankly, having a normal routine is making it far easier to stick to my treatment protocol. (It’s the herbs! I always forget to do the herbs…)

Most days this month, I felt like my Lyme-normal self. But I definitely had some spikes of symptoms here and there. Most were, unfortunately, related to increases in muscle pain. On a couple of days, I woke with horrible wrist and ankle discomfort, only to realize that muscle tightness in my forearms and calves were causing it. And on one occasion, I woke with my trapezius muscles on both sides in full spasm and, for the first time in months, had to spend days working at it with the lacrosse ball and cane tool. In the end, I had to run off to an expensive massage appointment, which I haven’t had to do in so long. I got back to functional within about 5 days, but that knot is still there darn it.  This is really disappointing to me because, as I reported last month, I thought I’d finally kicked these muscle issues.

Incidentally, this return of these symptoms makes me question what REALLY has been helping me in recent months. You see, I was sure that my doctor putting me on this Core supplement was what fixed it. But, at the same time, my doctor had also insisted I go full dose on Boluoke because my platelet count was SUPER high and she was worried about me having a stroke or throwing a clot – yikes. Well, I ran out of Boluoke a few weeks ago and I didn’t buy more (it’s so pricey!). Sooooo I have a theory that maybe THAT was what was helping with my muscle pain, knots and spasm. I mean, Boluoke helps with blood flow by breaking down biofilm and improving free flowing circulation. The more easily your blood can move through your muscles, the more easily it can flush toxins. And if it’s not flushing and toxins build up, I’ve been told that can cause muscle knots, trigger point pain and spasm. **shrug** Just a theory. But I’m starting back up on Boluoke right away to see if I can get this back under control. And also because my platelet count was again way out of range this month and I really don’t need to have a stroke mmmmkay? Going forward, I’ll be doing 2 pills twice a day because this supplement is SO expensive! (Full dose is 3 pills twice a day.) I’ll keep you posted!

Ok, so let’s do the official month 19 symptom list:

  • Ringing ears as always (but a little quieter lately, thank goodness)
  • Wrist and ankle pain, and low-on-the-skull headaches that seems directly related to muscle tightness
  • One episode of a locked up upper back with muscle spasm and knots

Things I’ve had less of in month 19:

  • Plugged ears
  • Dizziness
  • Bad dreams

I fully believe the symptoms that went away this month are directly due to me getting out of mold. My most recent bloodwork shows:

  • This January, 2017 my TGFB-1 score is down to 3,191 from 6,013 in October 2016
  • My CD57 score is back up to 38 from 22 in the same timeframe

This all goes to show, I am on the right path. Life supports that idea too. I mean, this month I was able to ride my bike 20 miles and go bouldering in the same weekend! I went to a hip hop show and danced all night (even had a couple whiskeys). I’ve been managing a big workload at Microsoft with ease. I’ve been going out to dinners and concerts and friends’ birthdays. I’ve even managed a little dating. Oh and I spent an epic day marching in the women’s march the day after Trump’s inauguration. Amazing change from my old life, really, all this activity.

I feel at this stage like I am definitely in my second half of treatment. Probably even my last year. I’m starting to think about strategies to get myself the rest of the way to remission, and I’m making lists of herbs and supplements I’ll continue once I get there. It’s so exciting to even think about that!! I’M ALMOST THERE, GUYS!

For month 20 of treatment, I’ve signed up for a med change. I was motivated to request this for a couple of reasons. One, is I feel like I’ve been plateaued for a while. Secondly, I’ve been on my current combo of meds (Zithromax, doxycycline and Bactrim DS + rotating herbs) for moooooonths. And although I’ve been mixing up the pulsing schedule to keep them on their toes, I have started to fear that the bacteria will adapt to this combo. I don’t ever want to lose this combo, so it’s time to switch off it for a bit. Lastly, I want to deal a serious one / two punch to Bartonella, which has always been a big challenge for me. With that in mind, my doctor has agreed to switch me to a combination of Minocycline and Rifampin. Eep!

I am very nervous about this because both of these meds have been very difficult for me in the past. In fact, they were some of my first meds I was ever on. On Minocycline, I had the worst herx of my life on day 3 of treatment. Pretty standard stuff for your first Lyme drug, but it sure scared me! However, after 19 months of treatment and very little herxing these days, I don’t expect this to happen again. What scares me even now, though, is that I had pretty severe intracranial hypertension that resulted in REALLY blurry vision the whole time I was on minocycline. My doctor always insisted that this was a herxheimer reaction, but it always seemed like a side effect to me, since it never got better even after the rate of bacteria die off should’ve leveled out. If it happens again this far into recovery, I am pretty sure we’ll know it’s a side effect. But gosh I hope she’s right that it was a herx, because that would mean I’ll fare much better this time around with so far fewer bugs left to kill!

When I started rifampin in month 2, I experienced herxing with bartonella-specific symptoms. Makes sense, it was so early in treatment. Even if this happens again, I know it’ll pass. Herxes mean bugs are dying! So as long as they aren’t too severe, I am DOWN for a good herx. What troubles me more about rifampin is that when I was on it again in month 8, I felt very depressed and fatigued, which I suspected was caused by rifampin-induced hypothyroidism (the med disrupts the speed at which my thyroid meds are absorbed, making it tough to stay in normal ranges). I also remember having my period almost constantly on rifampin, since it screws up my birth control, and I am always more symptomatic when I’m on my period. Plus it just stinks to always be bleeding, right?? And I fully expect that those things will happen again this time around.

So yeah. Lots of reasons to be nervous. But I just keep reminding myself that I am sooooo much stronger now than I was a year and a half or even a year ago. And even if I only stay on these meds a short while, it’s likely to do me some good. I’ve got my detox supplies ready. I am starting both drugs at pediatric doses and working my way up slow.  Fingers crossed, I’m ready! And I’m hopeful these big guns will give me a BIG step toward a very real and lasting remission. Onward!

Happy healing everyone.

-k

How am I treating? It takes whole-body healing. Here are my areas of focus:

  1. For a second month now, I have been using 1 scoop of Cholestyramine twice a day to deal with mold exposure from my ill-fated home purchase in October.
  2. Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Barton Ella. (In month 18, my meds were: doxycycline, Zithromax, Bactrim pulsed every other day + a-bart and a-Tula herbs daily.)
  3. I follow a dairy/egg/gluten/sugar/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 recently, I had been on them for the entire year of 2016.

Treatment Recap: Month 18

ONE AND A HALF YEARS OF TREATMENT DOWN!! Given that my initial estimate timeframe for treating was 3-5 years, this could mean I’m halfway there folks!

Physically, I’ve been holding up pretty well considering how crazy life has been since the whole mold debacle at my brand new house. (More on that later.) Honestly, with the fact that for most of month 18 I was working more than full time at Microsoft, fielding calls from contracts/mortgage brokers/real estate agents/ extra doctors, switching homes every few days or weeks, eating fast and packaged food exclusively, living out of a suitcase and facing serious uncertainty in my home situation, things could’ve gone a lot worse.

Many of the unusual symptoms I experienced in month 18 were a direct result of mold exposure, and only happened when I was around my home or near belongings taken from my home. Let’s do the list!

Month 18 symptoms:

  • Ringing in ears as always (no more variation in tone or volume though –  I believe this was related to a dosage increase in Zithromax which can be ototoxic)
  • Plugged ears, especially when inside my moldy house or near items taken from that house
  • Mild dizziness / brain fog when inside my moldy house or near items taken from that house
  • Bad dreams or vivid dreams, especially during this month’s super moon
  • Tightness and pain in wrists and ankle joints that seems directly related to muscle tightness, including one day of acute onset carpal tunnel that left my left hand numb and weak until chiropractic treatment

Things I’ve had less of in month 18:

  • Intermittent hearing loss and variations in volume and tone of tinnitus
  • Tremor in my right hand
  • More frequent heart palpitations, especially at night
  • Early waking
  • Muscle pain, especially in butt and back – core supplements (2 pills 2x a day with food) is the thing that finally cracked this nut!

For month 19, treatment tweaks I’m making include:

  • Doing one scoop of Cholestyramine 2x per day to bind to any mold toxins
  • Switching from a 4 on / 3 off antibiotic pulsing schedule to every other day (still taking doxy, Zithromax and Bactrim DS)
  • Using A-Bart and A-Tula herbs 2x a day every day
  • Adding selenium and chelated Zinc supplements
  • Adding a LOT of anti-inflammatory supplements from my doctor; quercertin, turmeric and nettles are all major players
  • I have run out of my Bob Miller supplements, and I’m going to see how I do without them (since none created earth shattering improvement upon starting)

Fingers crossed these changes promote further healing. Perhaps what will be most healing of all, though, is that the worst of my housing situation is over. At this point, I’ve decided to abandon my moldy house and all my belongings. I know. Crazy, right?? Unfortunately it felt like my only choice. Three factors went into me making this decision:

  1. Cost to repair was still very high: $40-50k to fix just the sub-roof and attic space
  2. The home is still attached to 4 other homes with the EXACT same problem, so likelihood of recurrence seemed, to me, to be quite high
  3. This was the kicker: I realized after taking some of my clothes from my house to the condo I was staying in, that the mycotoxins from the mold had seeped into all surfaces of the home. Just being around a couple bags of clothes made me very ill. This suggest that I could fix that attic all I want, but all items, all other surfaces, all drywall and wood and everything, would also have to be replaced for that to be a safe home for me. And I’m sure that cost would be more like $150k.
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Goodbye, house. Goodbye, stuff.

With one of the toughest decisions of my life solidly made, I set out to find myself a new home. Naturally, I started searching again in my beloved Capitol Hill neighborhood, where all my friends live and where I can walk to work. I looked at a couple of vintage units since they’re so affordable, but my ears plugged up immediately (deal breaker). I looked at a modern unit that seemed fine but was just too tiny. And I looked at a larger vintage spot where, kind of miraculously, my ears didn’t plug up at all. I was still skeptical, but some angel must have been looking at for me, because the leasing agent agreed to let me run a mold test and actually took the apartment off the market for almost a week while I waited for results. WHO DOES THAT?! Thank goodness she did. It ended up being one of the best ERMI results I had ever seen (2.99 ERMI score, 29 when you add Group 1 and Group 2 molds together and a 4 on the HERTSMI calculation). YAY! I decided to move in.

On the day I was going to sign the lease at my new apartment, I discarded all the clothes I’d had with me “on the road” since I’d washed them all with my moldy clothes when I was attempting to save them. I had only the outfit I was wearing, which was also contaminated. Just before arriving to signing the lease and get the keys, I went down to Pacific Place and purchased a pair of sweat pants, a tank top, a bra, underwear and a hoodie plus a pair of Uggs. When I got to the apartment, I stripped off my last set of contaminated clothes, double bagged them and stashed them in a corner of a closet I am not using. I showered, I changed into my clean clothes and I started my new life.

The most common question I’m getting at this time is “Did you really leave all your stuff behind?” The answer is yes, yes I did. I did try to save my clothes. I washed everything in hot water and borax, but kept reacting to them, so I gave up. I did move 6 paintings, 10 of my most favorite articles of clothing and my blue acoustic Washburn guitar into storage. I am hoping that once my body calms down, I can visit those things and see if I react to them. If I don’t, great! I’ll try them in my new, clean home. But if I do, I’ll either need to find a better way to clean them or just let them go.

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The 10 I’m trying to save…

So far NOTHING from my old house (except for me and the dogs) has come into the new place. I washed the dogs, I washed myself, and I even had the car that transported so many of these items cleaned and shampooed. As best I can manage, I have truly started over. I moved in with a sleeping bag, a Christmas tree and hope.

What happens next? Well, I foreclose on my home. I lose the $20,000 I spent buying it and I’ll have ruined credit for 7 years. And I’ll spend a lot of money purchasing new non-contaminated belongings of course (guessing $15-20k all said and done). But I’ll have my health, and my dogs’ health. And this endeavor will still be FAR less expensive than it would’ve been to try to save my house, especially if I hadn’t been successful. And really, what kind of price can you put on wellness?

The boys and I will be cruising into Christmas with a week plus off work, and nothing on our agendas except a whole lot of rest, relaxation and recuperation. To say life has been stressful since October is the biggest understatement ever (especially considering that September was home buying, travel and moving the FIRST time too). But the worst is over, we’re going to do a little reset, and I am SO grateful for this blank slate, for relative good health and for the gift of new beginnings.

Cheers to 2017. Wishing you all happy healing!

-k

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On the first night, we had snow. ❤

How am I treating? It takes whole-body healing. Here are my areas of focus:

  1. Under the care of an ILADS Lyme-literate doctor, I am following the Horowitz protocol using antibiotics, biofilm busters, supplements and herbals to treat Lyme and bartonella. In month 17, my meds were: doxycycline, Zithromax, Bactrim, a-bart and a-L complex.
  2. Under the care of a Klinghardt/Shoemaker trained doctor, I am also doing some light mold treatment (cholestyramine) and nutritional deficiency work (B12, zinc, and other minerals).
  3. 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.
  4. I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
  5. I follow a no dairy/egg/gluten/sugar/alcohol 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. I eat lots of veggies and drink a lot of lemon water to stay alkaline.
  6. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, letting go of a romantic partnership that wasn’t supporting my healing, and making a strong investment in a positive social network (online and off).

Treatment Recap: Month 17

Oops! I skipped Month 16 – sorry folks. It’s been really hard to keep up with everything while living “on the road”. It’s been a pretty crazy 5 weeks, really, since I fled home. I’ve been changing locations every few days, living out of my suitcase and my car, keeping the doggies with me all the time, and of course managing an ongoing would-be remediation and rebuild project at my house (soooo many contractors, so many decisions).

5 weeks away from home and we’re still scoping the work that needs to be done to remove the mold and rearchitect / rebuild the design elements that allowed it to grow in the first place. It’s been a real emotional rollercoaster. Initial bids came in at $55k+ to do the work, and for a moment I thought for sure I’d have to abandon my home ($55k costs about $200k to borrow as a personal loan and – on top of being unable to afford a $1000/mo payment for 7 years – I’m also just not down with spending another $200k to save a house that cost $300k). So I started researching foreclosure consequences and shopping for apartments. THEN I learned about 401k loans, and discovered I am able to borrow $40k at a lower interest rate with payments more like $700/mo for 5 years. Still a major stretch, but kind of doable if nothing else catastrophic happens in that period at least AND all the money is being repaid to myself, so I feel less crappy about investing in the payments. SOOOO Now I am waiting for my contractors to tell me if they can build a plan for under $40k that would save my home. It’s emptied and ready for work if they can manage it…

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I celebrated my 33rd birthday away from home, and I’m coming to grips with the fact that Thanksgiving, Christmas and maybe even New Year’s will all be celebrated away from home too. It’s so disappointing. I had all these grand ideas of hosting warm, bustling, food-filled festivities this year. Sigh. Hopefully something I can pick up on in 2017. My luck in 2017 HAS to be better, right??

One good thing through all of this is that my health has held pretty steady. Amazingly so, actually. One of my fears since beginning to get well from Lyme disease is that any crisis would throw me into overwhelming active infection all over again… I mean, you always hear people say that, that they were doing well until a big breakup or a death or a surgery or something. I mean, I know this from experience – I have ALWAYS had episodes of poor health (blamed on MS relapses) when my love life got rocky, and I fell sickest in 2014 just a couple of weeks after the then-love-of-my-life moved out of our home. Granted, this homelessness / mold fiasco isn’t as soul crushingly devastating as losing a big love was…. but I’m still really pleased I’m holding up ok through this.

That said, the whole scenario hasn’t been without consequences. I’ve been working with my klinghard doc who is also mold literate and works the Shoemaker protocols. Naturally, she’s done a bunch of mold testing on me.

Interestingly, we had done some baselines just a week or two before my ceiling came down and the whole mold fiasco started. In those baselines, we had found:

  • Shoemaker labs showed past mold exposure is DEFINITELY part of my illness, but with a pretty low TGFB-1 test, it was not current mold exposure (INTERESTING!)
  • My CD57 score (natural killer immune cell count) was 58, up from 29 when I first began treatment. Still lower than I’d like as over 100 is a “safe zone” often associated with Lyme remission, but way better than I had been at my sickest
  • Not mold related, but I had an unfavorable copper / zinc ratio often linked with muscle pain

Now, I was doing A-Okay in my house until the ceiling was removed and all the mold was exposed. After that I felt pretty sick inside the house – plugged ears, nausea, vertigo… hard to know how much of this is true physical reaction and how much is stress, but I never felt well when I went inside. When my doctor re-ran my labs, she found:

  • My TGFB-1 score (an inflammation marker) had nearly doubled
  • My CD57 score had dropped way down to pre-treatment days at 22

Now, I had also fallen down stairs and sprained my ankle pretty good… maybe even broke a couple little bones (cuz my luck is just that awesome right now). And I had also been EXTREMELY STRESSED OUT in the days that immediately followed fleeing my home. So… it’s hard to know what impacted what here. This bad bloodwork could all be the result of ankle swelling and stress. Or it could be mold. Or some combination of all the above. But bottom line is, in late October, these numbers were not looking good. I’ll run them again in late November / early December and get a better read on how I’m doing.

In the meantime, I am just trying to stay calm, to ride the waves and do the best that I can with all this uncertainty. And I can’t be too shocked or surprised that I do have some strange symptoms happening. Let’s do the list!

Month 17 symptoms:

  • Ringing in ears as always – but now with episodes of new tone and increased volume
  • Brief periods of hearing loss on either side that usually pass in 2 minutes or less – yikes
  • Plugged ears, especially when inside my house / around the mold
  • Continued tremor in my right hand which remains episodic and somehow related to food (gets better when I eat)
  • More frequent heart palpitations, especially at night
  • Episodes where I feel like I am ABOUT to have vertigo, but then I don’t – hard to explain, it feels woozy/spinny almost but then passes without actual instability
  • Bad dreams, trouble sleeping

Things I’ve had less of in month 17:

  • Muscle pain (YAAAAAAAAAAAAY!! This had been REALLY getting me down for like 4 months, but now I can sit at work, I don’t rush off to active release therapy or massage multiple times a week anymore, I can go to theaters!!)
  • Light headedness
  • Exhaustion
  • Eye pain and light sensitivity
  • Foot pain (except when my temp roomie made me jog… heh.)

So yeah, things are definitely a bit mixed up. But overall, I am extremely pleased with how my body is holding up. I am ESPECIALLY pleased that a lot of that chronic pain and muscle spasm I’d been experiencing has gotten better. I’m honestly not sure what finally cracked that nut. A few possibilities are:

  1. Dumb luck
  2. Dextrose shots (I did 3 sets of about 30 shots in my back and flanks)
  3. CORE brand supplements to address that negative copper / zinc ratio I mentioned earlier
  4. In month 16 I went back on Doxycycline which has stronger anti-inflammatory properties

** shrug** who knows!! But if you’re experiencing back pain and muscle spasms, maybe try a few of those things!

In more good news, I  had two neat FIRSTS this month in the name of my birthday. I had my FIRST tattoo since getting sick. Now, it’s a pretty little one, about 45 minutes of actual time under the needle, but it went really really well and I noticed no ill effects. YAY!!! AND later I had a birthday cocktail!! Well… more like I drank a quarter of 4 different cocktails so I could taste lots of my old favorites, hehe. But still! It was delicious, and amazing and I had absolutely no ill effects at all!! So I’m super happy about both of those developments. My birthday was silly, and raucous, and full of goofy, dancy, happy love. Needless to say, that was an INCREDIBLE treat during a really otherwise pretty shit period of my life. I’m so grateful.

I think that’s all the news from here. By my next Treatment Recap update, it will be a year and a half of treatment complete. Wow. What a gift this healing is. I hope I have some really good house and health news to share by then.

Until then, happy healing everyone.

-k

How am I treating? It takes whole-body healing. Here are my areas of focus:

  1. Under the care of an ILADS Lyme-literate doctor, I am following the Horowitz protocol using antibiotics, biofilm busters, supplements and herbals to treat Lyme and bartonella. In month 17, my meds were: doxycycline, Zithromax, Bactrim, a-bart and a-L complex.
  2. Under the care of a Klinghardt/Shoemaker trained doctor, I am also doing some light mold treatment (cholestyramine) and nutritional deficiency work (B12, zinc, and other minerals).
  3. 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.
  4. I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
  5. I follow a no dairy/egg/gluten/sugar/alcohol 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. I eat lots of veggies and drink a lot of lemon water to stay alkaline.
  6. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, letting go of a romantic partnership that wasn’t supporting my healing, and making a strong investment in a positive social network (online and off).