i would love to be writing right now, able to say that i’ve been living off-line, on the other side of this, healed, healthy. i don’t totally know why i stopped writing. i have some thoughts about it, hindsight and all, but really, i just wasn’t sure what to say anymore or how to say it. more importantly, i wasn’t sure if what i had to report was helpful or potentially really harmful to anyone who might just stumble across this blog. i had no idea what was happening to me and i was terrified.

the blistering rashes persisted and at my last appointment, the good doctor and i were in total agreement- i should not take antibiotics. no drugs to target this right now. none. nothing. what we have come to think is that i had stevens-johnson syndrome. according to the mayo clinic, “Stevens-Johnson syndrome is a rare, serious disorder of your skin and mucous membranes. It’s usually a reaction to a medication or an infection.” this shit is no joke. it’s a “frequently fatal” condition that’s genetically most common among south east and east asians, you know, providing you have the hla-b 1302 gene for it. i developed this reaction to a number of medications, so putting a total kibosh on any oral antibiotics was the humane thing to do. i had begun to drag, to fall behind any kind of schedule because every single time i started any treatments, i was instantly magenta and whimpering, fried on the couch, sleepless and exhausted.

it’s really the most masochistic thing i’ve ever done, continue to try slightly different drug combinations every three to six weeks or so. just as i started to heal, i pushed myself right into a new regiment. usually after the first dose, but a few times it didn’t start until the second day, an “off” day, my skin would flush. it would start to tingle, pinpricks dotted the darker areas first. bright, hot splotches stretched out across my face, neck, chest, arms, back, belly, all the way to my toes. the affected areas grew rapidly, gaining more territory on my body each time. i never made it to a third day of treatment, not since the fall. somehow, i managed one round without horrifyingly bad results. unfortunately, a few weeks later when i tried the combination again, the reaction was worse than before.

so small.

for no reason except that i tricked you into looking at tiny me hiding in the rocks at johnson’s shut-ins in missouri. sorta sad post. quick! be distracted by a super happy picture! *not peeing in it. i certainly hope i’m not. i’m wearing jean shorts. i did not believe in shirts.

when i went to d.c. for my last appointment, i came with a stack of printed pictures in chronological order. from the first little spot on the inside of my bicep to my willy wonka factory worthy pink tan, i had the last 14+ months of the progression of the rashes. the doc said he’d never seen anything like it before. i hadn’t even put it together until i physically put the photos in the right order. the flip book i made of my skin is a coherent picture and it only stands out visually in this very messy process. the variations in multiform rashes presented so differently, that it was hard to determine what had been happening. stevens-johnson syndrome can do this, but i can’t find any cases like mine, ones with such prolonged exposure. they probably exist, my research just isn’t turning anything up. i wonder what would have happened if i would have pushed on through a whole round… probably best not to think about it. still, meds and genetics aren’t the only cause of sjs, so who’s to say why it all went down? and who’s to say if it’s absolutely sjs… i’m back to being a bit of a mystery case.

i was able to cut down on a number of my western meds. this is progress, no doubt. i have been stronger and i have gained ground. our plan was for me to secure access to a hyperbaric oxygen chamber (that hasn’t happened) and to keep on keepin’ on. after spending months, agonizing over the mold issue at our house, i thought we were virtually mold-free, as much as a house in the woods could ever hope to be. but when the long freeze ended, three feet of snow melted onto the foundation and into the crawl space. once again, those f*cking mold spores perked right up. i don’t want to put in a chamber until we get this mold remediation done and it runs about $300 a dive (that’s what the treatments are called, dives. it’s really the same thing as scuba diving. or how they pressure-treat raw juice to kill bacteria) at a facility that will treat lyme. most insurance will not cover HBOT for lyme disease. necrotizing wounds? oh, totally. the bends? of course! a chronic, debilitating disease? meh. no, sorry.

fast forward to a few weeks after my lyme doctor’s appointment. i became convinced that yeast was my problem. “i will boldly and quickly eliminate yeast!” then i thought i was potentially, maybe, could be kicking off a yeast infection party. i hadn’t had one in years. in part to see what kind of die-off reaction i’d have, i took a diflucan, an anti-fungal medication. i’ve taken that consistently throughout my medical life with no issue. it was more of an experiment than anything. moments after ingesting it, i felt warm, then flushed. a half-hour later, i was perched on the edge of the couch on a silk robe, naked, my arms like chicken wings raised off my torso and wobbling uncomfortably in the air. i started flushing my system. i downed as much apple pectin as i thought safe… i drank gallons of lemon water. i soaked in epsom salts, baking soda and apple cider vinegar. i pushed that shit out of my system, but the blistering and skin pain flared. i doused myself in emu oil, bentonite clay and moisturizers. i can no longer take any pharmaceuticals that i’m not already on. or, i guess i should say, i don’t want to. no one is making me or asking me to right now, but i’m not looking forward to the day when i do need to take something.

though now marked with deeply pigmented spots across my body, clusters of dark freckles, like bruises, on my face, i do feel better. i’m slowly building back some strength. i have to pace myself, but i’m trying to be more active. my skin is still highly sensitive. sunlight, sweat, chemicals and pollution all trigger reactions. there’s nothing that provides full-protection or complete relief, but there are times when it doesn’t really hurt. mornings through midday, i’m usually doing all right. add in a touch of sweat and it’s game over. it seems to be worse in the woods than in the city, which is surprising to me. i’m experimenting with natural and essential oils to find something that helps heal my fried nerves. i’ve been taking a fermented cod liver oil, fermented skate liver oil, clarified butter (no lactose) in coconut oil in place of vitamin a, d, mk7 and dha/epa/alltheomegas supplements. that saves a fistful of cash each month. there’s a noticeable difference in my skin’s elasticity and my joint pain has decreased a bit. if you think you can’t handle the fishy taste, go for the cinnamon flavor. there’s a lot of cinnamon oil in it, but it’s definitely the best one in terms of flavor cover-up. i have the caramel stuff. i take it with coffee in the morning, like bulletproof, but fishier, i suppose. and since i don’t do diary, i was concerned about the clarified butter. after a little gut adjustment period to the amount of oil in general, i no longer have any problems with the supplement. if you can afford the capsules, try ’em, but they are significantly more expensive. i did the math but can’t quite remember if it really was 9x more to buy the capsules than the oil in a jar. i wish it was a glass jar…

i either lay around or charge full-steam until i collapse and take days (or longer) to recover. slow and steady has never been my forte and it seems i still have a lot to learn to really embrace it. i’m trying. all things in time.

even though there are things i feel quietly declining, i know that i am improving in some areas. my ability to recall numbers is markedly better. that’s a little too specific, i suppose, but it’s something that i’ve missed. and it indicates that areas of my brain are healing. i wrote my first complete song. it was a solid poem that i re-visioned. it needs finessing and editing, but it has a melody, bridge and chorus and the lyrics are on. it’s a better song than poem. the structure is all in place. i’m shocked that works. i actually like it.

i’m working on a huge project about chronic lyme disease, but when the primary collaborators have late-stage lyme, it can be pretty stop-and-go. we’re slowly putting it in gear and soon it will be in full-swing. i try not to think about how i will keep up. i try to stay positive.

but on the real, i’ve taken in more water on this journey than i realized and i’m finally starting to go under. as i get better, it becomes painfully clear that i have been in a progressive depression. i’m so accustomed to hiding how i feel, that i effectively hid this from even myself.

in another post, brother.

sending you all sweet, healing wishes,

-k

Advertisements

can we just skip my song and dance about why i haven’t written in almost two months and just talk about how ILADS is playing “long cool woman in a black dress?”

it’s day two of the ILADS (international lyme and associated disease society) conference and i’ve been consumed, typing frantically, scribbling notes, asking questions and actually talking to people this year. i missed last year’s conference due to that near-death bout with sepsis and the hurricane.

this morning i sat down at an empty table. within a few minutes, dr. daniel cameron, the new ilads president elect, sat down in the chair to my left. a few minutes later, the current president sat down to my right. then, dr. richard bransfield, who presented yesterday on “the psychoimmunology of tick borne diseases and its association with neuropsychiatric symptoms,” (my favorite session so far) joined us. suddenly, my empty table was the one in highest demand. i sat there, trying to politely gobble up cubed fruit, cut too big to fit gracefully in my mouth. i thought i could remain a fly on the wall until dr. cameron began talking to me. i found myself engaged in one of the more interesting conversations i’ve had at this conference.

part of why i’ve fallen off the internet is because i’ve been working on a much larger project, a way to reach a wider audience to bring attention to lyme disease and raise awareness. dr. cameron actually recognized me from a brief encounter i had with him at the ilads conference in toronto a couple of years ago. his practice is near me, in the hudson valley, and he offered to help me reach out to women of color whose lives have been dramatically and negatively impacted by these diseases. this is really exciting and i’ll tell you why.

i’ve been really trying to network this year, actually talk to people when i sit down for meals or have a break from the various sessions. it’s not the easiest hurdle for me. these tick borne diseases have left me with anxiety that knows no bounds. my social skills, once so finely honed, have fallen away and it takes significant effort for me to reach out to strangers face-to-face. but one of the really interesting things that i’m discovering, a theory i had that’s being proved anecdotally this weekend, is that there are few women of color in treatment. prior to this morning, out of everyone i’ve asked (and right now that’s about 15 different practitioners), only one doctor said she had a chronic lyme patient who fit my bill.

sad as it is, this makes sense, right? when we look at communities of color, we’re looking at a lot of intersectionalities. people of color (POC) statistically have less money, are uninsured or underinsured and are less likely to seek medical treatment. there’s also a lot of stereotypes associated with folks of color not having lyme (to be clear, i don’t believe that people of color don’t have lyme. i believe they are not being treated for lyme. this, in and of itself, is a subject that i really want to explore more). medical models work on the assumption that POC are less likely to be outdoors or live in areas that are considered endemic, thus making them less at risk for contracting and tick borne diseases. POC often seek emergency medical services and your average er doctor might have spent a couple of hours learning about lyme disease in med school. it’s highly unlikely that someone would be diagnosed with lyme or any co-infections in an emergency room. my experience, as someone who has state and federal health insurance, a myriad of autoimmune diseases and tick borne diseases (some of which are not recognized by the medical community at large), a long list of medications and supplements and is a woman of color, led to me being put in an observational ward, receiving no treatment for a severe case of sepsis. when my partner and i tried to make sense of how i was treated (or not treated, as the case was), we came up with a list of things that qualified me as a “throwaway patient.” i didn’t have a local doctor to fight for me and my rights. the emergency room staff saw me as poor, crazy and drug-seeking and those assumptions trumped the medical fact that my body was starting to shut down. in my opinion, my hospitalization and lack of treatment was not an aberration. it was the ways in which i am privileged that saved me (this includes knowing one of the hospital’s major benefactors). without those privileges, this is a truly unfortunate and common experience for POC.

i could really go on about this for pages, so i’ll leave this here for now.

overheard at breakfast was that the cdc may have just increased their number of lyme cases from about 30,000 people to 300,000 people because a vaccine is likely to be released in the next few months. this is exciting news on the vaccination front, but, of course, pretty underhanded of the cdc. once again, they play to the tune of big pharma instead of looking at the staggering number of people suffering from lyme and co-infections.

this year, i’m going to a lot of presentations that are more specific, strange little wormholes of information and research. in the past, i focused more on general overviews and mainstream treatments (i’m actually including integrative approaches in this categorization, at least in the ilads community). two female lawyers, one from the west coast and the other from the east, who are experts on lyme and disability gave fantastic presentations accompanied by a very thorough question and answer session. i’ll definitely write about that, as i know so many of you are fighting to keep your head above water and the battle with insurance companies and the social security administration is an energy drain that so many of us find nearly impossible to navigate.

i hope that over the coming days and weeks, i’ll find it in me to write about some more of the wonderful things i’m learning here. i’m trying to make a comeback on here. but right now, i should probably check my brain back in to the conference.

 

stasis.

July 18, 2013

i started treatment on monday (and i concluded treatment on monday). at my last appointment, i was assigned the same regiment that i’d been on since i moved from intravenous to oral delivery. every treatment since i had sepsis has been pushing me one more step further into this reactivity that has become completely unbearable. was it einstein’s definition of insanity- doing the same thing over and over and expecting different results? well, that’s how this prescription felt. taking half the doses of medications that make me violently ill and create permanent scarring didn’t seem like the right solution. it wasn’t logical to me that i would have a lesser reaction to something that i’m allergic too… but i deferred. i reminded myself that i don’t know best. i reminded myself, though my disease combo is unique and lyme and co-infections manifest differently in everyone, i still don’t know the severity and range of symptoms, by-products of  the toxic die-off. so i didn’t protest too much.

seven weeks had passed since my last round ended. sure, i’d had two colds, an unpleasant stomach issue, been stressed, exhausted, anxious and had more than a couple of seizures (not tonic-clonic), but in all, i did it. this past weekend i overdid it and made double plans for three days in a row. i only managed to hit the fifth outing, but 5/6 isn’t bad. i wanted to see friends i hadn’t seen in years and i felt well enough to finally attempt to do it. i got home a 3 am on saturday (and then read about trayvon martin until 5 am). i cannot recall the last time i did anything like that.

this social schedule wasn’t easy and a few things made it harder. the lupus flare causes intense photosensitivity (important note: photosensitivity can be caused by a wide variety of things, including antibiotics like doxycycline). i forgot how hard it is to work around in the city, especially when you have dogs. heavy spf’s and tons of reapplications (there are whitish marks on everything. from my rear car door to my purse, you can see where i’ve been) have helped that issue. a new and incredibly irritating symptom has surfaced for me. if i start to overheat, even just a little, not breaking a sweat, just warm, my body starts having neurological malfunctions all over. sometimes it feels like my scalp is being stabbed with needles. sometimes, it’s the small of my back or a place above my knee (i actually just listed the places i can feel them right now). the pinpricks are increasingly worse. in addition to the heat/sun complications, i did notice other symptoms return, like aphasia and emotional lability.

blogpic7:13

this is a gentler, softer version of the real thing. the beautiful light muted the redness.

monday morning, i took care of a few final projects before incapacitating myself. i decided to stagger my antibiotics and antimicrobials into four doses, each at least four hours apart. first set of medications, no problems. the second set contained cipro, a strong anti-bartonella and anti-borrelia antibiotic. i immediately began to burn. my skin felt hot to the touch. the 100+ spots that had faded to brown, instantly mobilized and flushed magenta. my features swelled and thoughts bounced around my head at a rate too-frantic to unravel sentences. i couldn’t sit still because i thought i might lose my mind, so i cranked the a/c and starting working on little project in our studio apartment. at one point, i was trying to hang pictures. three times. three times i took the wrong measurements and hung a huge mirror in the wrong place. i don’t really even like where it is… so my cognitive function was greatly impaired. about four hours after i took the cipro, the symptoms gradually shifted to slower gears. six hours post cipro, i took the rifabutin dose. this reaction wasn’t quite as instantaneous, but it had a quick onset too. all those brown-turned-magenta spots flamed brighter and i was in agony. my face flushed- the bridge of my nose and the space below my cheekbones gleamed red. my ears, inside and out, seared with heat and pain. even my shins and my feet sprouted inflamed patches. my eyes were bone dry and i couldn’t sit still.

i did everything i knew to do in order to not only push it through my system as fast as possible, but to also quell any allergic or histamine response. i used all my go-to rescue meds. even after i exited the acute phase of my reaction, many symptoms linger. the burn-damage has created tight, red skin that itches mercilessly and tears like delicate paper. i can’t go outside because i can’t take the heat, humidity, air-pollution, and sunlight. even if i could brave those things, i look monstrous. “what would you think happened to someone who looked like this?” i asked my partner. he shrugged and said, “no idea.” but i pushed. i wondered what i would think. “i guess i’d imagine that they had second degree steam burns or something,” i said.

on day one of treatment-gone-wrong, i wrote desperate emails, begging for help. after the antagonistic rifabutin, i paid for an online consultation with a provider at my primary lyme doc’s clinic. i said that i wasn’t going to take the cipro again. it seemed logical to assume that my immediate reaction to cipro indicated an allergic or highly sensitive response. the rifabutin, according to my unsubstantiated claim, catalyzed an incredible herx. i don’t know if i’m allergic to that one too.

so what does the good doctor think? he believes that the skin eruptions are likely related to vasculitis. lyme can and does infect the lining of the blood vessels and when killed, can result in these types of severe and painful herxes. but this could just as easily be a “drug reaction,” though the medical team seemed dubious of this cause. dr. j “feels that your reactivity is also heightening because your immune system is getting stronger and the antio-biofilm measure are exposing more infection; therefore it isn’t just the antibioitics doing the fighting, but your immune system as well. a large part of this is related to die-off.” so maybe all of this is just a response to killing my co-infections, but they did agree that i could stop these meds. they came up with a new plan, one that’s gentler, but i don’t start it until next week. it’s going to take my skin a lot longer than a week to heal, so i’ll begin the monday’s new protocols already in the hole. i’m just praying that this targets something else.

back at the ranch (upstate), the air conditioner keeps breaking. i’ve discovered another aggressive spread of aspergillus (mold) and decided to treat as much as i can down in the city so that i’m not also dealing with toxic mold exposure. but i’m headed back there tonight and so begins the real, expensive process of tackling mold. the remediation is involved (understatement of the year), but we can’t live with toxic mold and we can’t sell the house to anyone knowing that this problem exists.

one great thing about doing treatments in the city is that i can get just about anything delivered to my door. last night, i went a little overboard on seamless, a broad restaurant delivery service that pays itself by charging the restaurant, not the hungry creature that opens the door (it does take 20%, so if your restaurant already delivers, it’s best for them if you ordered directly from the restaurant). how do i know that i was a tad indulgent? because i started off today with a blueberry cookie from momofuku milk bar. this is not my favorite cookie, and it’s possible that the butter is going to kill me, but if i never try them, how will i know? milk’s vegan, gluten-free “pie” and cookie are pretty damn delicious too. just to make you feel better, the first ingredient is coconut milk, not sugar. yes, sugar is second.

i have a stomach ache. really. at least i earned this one the fun way- over-eating until it wouldn’t matter which pair of cookie-pants i was wearing, they still wouldn’t fit.

yes. yes, it did.

in the event that you haven’t yet heard, there will be a worldwide protest for lyme disease awareness on may 10th OR 11th. it seems less like a protest and more like a worldwide rally to me, but maybe that’s just semantics. whatever we call it, it’s a visible form of resistance and that’s a key ingredient to creating institutional change. you can find out if there’s anything happening in your area by checking this page. i think each region has chosen only one of these two dates, so be sure to look closely for the exact time and day. it’s not a two-day event. for us new yorkers, the rally point is in new york city’s union square on friday, may 11th from 12-4. there’s a nice line up of speakers and some great resources and information available. 

*this protest is how i found my new lyme literate rheumatologist. hell to the yes. there IS such a clinician and, as it turns out, she was also the president of ilads at one time or another. finally, a new strand of hope to light my dreary day.

one of the questions i’ve had from the start of all of this, since i saw the film, under our skin, was how i could discern which symptoms were from lyme and co-infections and what ailments were the result of lupus, scleroderma or any of the other autoimmune disease diagnoses that i’ve accumulated over the years. my initial hope was, of course, that i didn’t actually have any autoimmune disorders and that the great mimicker was to blame. given my family history, that’s likely not the case (did you know that japanese have perhaps the highest rate of autoimmune disease per capita? i am genetically wired for diseases and laughing at people getting hurt). as i’ve been moving through this process, i’ve often wondered how we’ll know when we’re really done. when do we stop treating the lyme and co-infections? where does one thing end and another begin? if only there was a definitive test for tick-borne diseases… sigh. 

i have an incredible rheumatologist who practices functional medicine, but she lives in iowa. though she has attended some seminars on lyme, she’s generally unfamiliar with the treatment protocols and it’s not like there’s one way to treat, one plan that everyone agrees works. the basis for functional medicine lies in examining the underlying causes of symptoms. emphasis is put on treating the patient by creating an individualized plan. there’s a lot of gravity given to the “right” diet and ensuring that your body is being supported in the best holistic ways. this means taking supplements, employing varied cleanses, modifying and changing eating and sleeping habits. antibiotics and other western pharmaceuticals are used sparingly. given these factors, distance and differing approaches, i haven’t actually been able to use her as a resource. i have personally found that most medical practitioners either don’t believe in chronic lyme or are scared of potential and severe repercussions from diagnosing and treating lyme patients. i haven’t been able to get anything out of the appointments with my other doctors because they don’t understand the intense iv antibiotic and integrative treatments i’ve been undergoing. that might be a bit of an overstatement. i haven’t even bothered to schedule any appointments with doctors other than dr. j. i did try to see a highly recommended internist who thought i was crazy for believing in the existence  of chronic lyme disease. i left there furious. sometimes i feel like i’m not above punching somebody in the nuts. he was a great candidate.

switching gears here…

though i doubt that anyone other than my partner really sees it, i’ve been massively depressed. what great actors chronic lyme patients become. my partner’s birthday is in two days, mine is the day after and five days after that, i’ll celebrate six years of being clean and sober. the first week of may has a lot of really big deal events (happy birthday to ALL my taurean friends!) and instead of being excited, i’ve been dreading that week for awhile. it’s not that i mind getting older. that seems like a complete waste of energy. unfortunately, for one reason or another, every year around my birthday, i slump my way into a giant hole. when i wasn’t partnered with a person who had a back-to-back birth date, it didn’t matter much that i felt like eeyore every year on beltane. but when you’re a consistent, sad bastard on your boo’s birthday year after year it’s not so great. and that just seems to fuel the pathetic fire. my great depression of 2013 seems to have arrived a bit early. i’ve been weepy and overly sensitive, quiet when i’m angry and withdrawn when no one’s watching. i feel totally lonely, but don’t reach out to anyone. i want and need help taking care of the house, the animals, the boy with a broken ankle, but when help comes, i unintentionally rally, put on the show, and don’t ask for much. i did ask a friend to help me pick up two enormous tool chests from sears. he was kind enough to drive and help shoulder the beasts into my garage. a few friends have come up to cook dinner and hang out, which has been a nice distraction. but… the only people i feel like i can really mine for heavy assistance are my immediate family members, and at this point, i’ve really worn them down. i feel like a burden and to make everything harder, so does my partner. he’s horizontal, leg wedged up in the air and constantly apologizing. wet blanket meets wet blanket. i have been in dire need of a win.

switching to third gear…

while looking at the line up for the protest in nyc, i noticed that a rheumatologist/internist was a featured speaker. when i read that she was a former ilads president, i instantly googled her contact info, called her office and set up an appointment. oddly (which i say because she was the president of ilads), she has incredibly varied reviews from her patients. i tend to feel like the majority of reviews are made by unhappy customers, not the satisfied ones. i often think about writing rave reviews, but i must admit that the only ones i can actually remember posting we’re the ones where i was mad as hell (and i won’t take it anymore. apparently i’m experiencing a throwback monday. that movie came out in 1976). in any case, she actually accepts my insurance! i’m really, really excited for my upcoming appointment. i had long since given up the idea that i was ever going to find a rheumatologist who actually “gets it.” at some point i’ll get into the backstory because it’s quite significant in lyme disease’s big picture. we have rheumatologist, allen steere, at the heart of the problem, but this piece is already too long. how the field of rheumatology stunted and/or prevented comprehensive lyme disease research is fodder for another day. today, i’m grateful for the chance to meet with a new doctor who might be able to help me negotiate the intersections of my dis/eases.

come hell or high water, i’ll be in union square the friday after next. i might even geek out enough to wear a lime green dress that was once my favorite, albeit obnoxious, frock. that’s how far i’d go to bring even the slightest bit of attention to lyme disease awareness, education and treatments. i will break all my fashion rules and bust out clothing from the days when i tromped through life like a little japanese manga character. last fall, i promised to be at the ilads conference but failed to follow through on account of having sepsis. this spring, nothing is going to stand in my way. i have 10 days to come up with a clever sign. i don’t think that the “jesus had two dads and he turned out just fine,” sign in my garage is going to fit the bill.

*hi mom. i’m sorry i didn’t tell you first. i’m too crabby to talk on the phone. i’ll call you tomorrow. xo

the tides have changed.

October 20, 2012

for the first time in well over a week, i feel like i’ve been able to have some semblance of my usual morning routine. i woke up at 5:45 for a tiny cup containing one medication and acidophilus, had an iv started, got stabbed in two different places for blood cultures and lab draws, and tried to turn down fresh towels (yo, i’d rather be a dirtball than step foot, flip-flopped or not, into the only shower on this floor). after all of that, i played ukulele and sang. cleaned up the room with those kill-everything wipes, tried to clean myself up (not very successfully) and ate the sparse, strange breakfast that had been delivered earlier.

my new hospital room view of the hudson river and the mountains.

yesterday morning, i woke feeling stronger than the day before, but still desperate and anxious, ready to fight for my rights with the first authority figures that walked through the door. unsure of what my mind’s elasticity and ability to fend for myself, i started prepping at 6 am. doctor’s rounds begin at 7. my partner and my brother showed up before 8 am. we waited and waited. by 11 am, no one other than nurses, phlebotomists and housekeeping had visited me. my roommate, a tiny woman well beyond her 70’s had turned the television on her side of the room on around 7:30 and by late morning, during the price is right, i just about lost it. that t.v. had been blasting telenovelas and gameshows since i moved to this floor the day before. i don’t hate television shows, but i sure hate television with it’s loud, cackling, incessant noise and obnoxious commercials. the ads in spanish geared towards men kill me.

my family and i tried to decide what to do. in spite of the fact that the night nurse had entered in all of my medications and cleared them with the hospitalist (who refused to see me again), the morning nurse told me that the medications were not approved. i was not allowed to see my medical file. i was never given my patient rights, which i know states that i should have access to my file. there was all of this secrecy about everything to do with my case. evasiveness seemed to be the hospital standard. i wasn’t given any information about the blood infection, other than that the infection was not just in my line, but in my peripherally drawn blood (from a regular, old vien) as well. i was finally told that i had a gram negative bascilli, but that they didn’t know what kind yet. they had already removed my central line. a giant gauze pad covered by tagaderm jutted out of my chest where my line once dangled. i didn’t know what was going to happen next and no one was telling me. it felt like every time we made a step forward, somehow, somewhere, someone backslid on that decision and i was back to square one. frustrated, exhausted and sick, i ran out of steam. i ran out of every reserve of patience, understanding and effort. i cracked.

staring out the window, i began telling my brother about one of my forced institutionalizations. in what is too personal and too painful to write about publicly, i was forced into a hospital psych ward under false pretenses. for four excruciating days, i tried to just make sense of what was happening, what had happened and why. i wasn’t just devastated, i was leveled. i had no fight left in me. i was sick. i was crazy. i was alone and i felt completely betrayed by everyone and everything. this, what has transpired during this week of trying to get treatment for a blood infection, is nothing like that and yet it felt so uncomfortably familiar that my mind was stuck in an old, post traumatic stress loop. the reality of my current situation was that i couldn’t leave the hospital. i was being treated like i was crazy and as if my excessive medications were things i just self-prescribed for a disease that didn’t really exist. desperation had passed and left me depressed and deflated.

without a primary care physician in my town, i had no doctor that the hospital would listen to. i was told time and time again that they had my lyme doc in d.c. had not spoken to anyone there, though my medical team assured me that they had spoken to these doctors. at a complete loss, we contacted a friend and asked for help. all of a sudden, the tides turned. i won’t go into detail about this stuff, but i did get a bedside visit from hospital higher-ups, as well as meetings with all types of other hospital staffers. sometime in the late evening, i got up to go to the bathroom and discovered that my roommate was gone. the t.v. was still blaring the news in spanish. i turned it off. silence. sweet, sweet silence. it was clear that everything had changed.

earlier in the day, i was told that on monday they would place a picc line, a peripherally inserted central catheter, so that i could continue to administer the antibiotics i need to treat the blood infection. unannounced, a person came to transport me to interventional radiology where they put my a new line in my left bicep. so yesterday, i chose to have the same type of line (powerline picc with an internal cuff to prevent the line from being pulled from my arm) put in. when i had my chest cath installed, i was anesthetized. this time, i was awake. it was interesting and a bit painful. they sutured the statlock to my skin. this is probably the most uncomfortable part of the whole deal.

i don’t know when i get to go home. i do know that i’ll be able to resume my lyme disease treatments after a few weeks or so, once the infection is gone completely. the staff here is much nicer to me and my mood is up. when i look out the hospital window, i can see the hudson river, still and shimmering in front of the mountains. it’s beautiful, really, but i can’t wait to be released, to go home, to sleep in my bed, to not worry about touching anything or getting c-diff. there really is no place like home.

the news from your bed.

October 15, 2012

for the first time since i began intravenous antibiotic treatment for chronic lyme disease and co-infections (in my case, bartonella and babesia), i didn’t have a scheduled start date. dr. j referred to this as a “fluid schedule,” one that i would decide when to begin. kind of. he told me that once i started to get sick (or run out my “immune capital,” as he once called it), then it was time for me to start my treatments. a little piece of me was dubious, having been on lots of holidays and having watched my healthier days slide into not so good ones. another part of me ran with this idea. dr. j. reeled me back in. “you have to start at some point during this next week.” i think i actually pouted. i’m pretty sure my bottom lip pushed into the top one, squishing my face into an obvious pout.

for the first half of my iv treatment, my “holidays” (time off of antibiotics/antimicrobials and other killers) were strictly scheduled for one single week. i might have three to six weeks of treatment, but once i finished the round, i had seven solid days to not feed this stuff into my body. for the first couple of months, i did feel better on the breaks, but not amazing. i wasn’t well enough to make solid plans or to know i’d have an appetite. we still couldn’t plan very far ahead. at some point during those seven days, we’d drive down to washington d.c. to see my lyme doc. after an in-office test dose of whatever new iv antibiotic i was going to be infusing in the upcoming cycle, a check-in about medications and supplements, long discussions about reactions and my experiences during the last round, and a question and answer session with dr. j. where i consistently push to learn more about my treatments, new studies, anything i can pick his brain about, i would go to the front desk, pay for my visit and schedule my next one.

the first time i had a two week holiday, on the very day i would have resumed treatment, my body responded as though i had. i got sick. mind you, i was in the woods and was more physically active in two weeks than i had been in five months, but i still got sick. the second time i had two weeks off, i made it just about to the end of the second week before my body gave up again. immune capital gone. this “fluid schedule,” gave me a bit more room to see where my body was at. i started up iv treatments after 17 days off. this break wasn’t as easy as the one before it. i had a longer post-treatment detoxing period and i felt a lot more fragile. i had to really pace myself and be realistic about what i was capable of doing. this past week, i definitely wasn’t on the right side of the line. having spent a lot of time in brooklyn, using public transportation and sleeping in the living room of two people who contracted the first wave of new york plagues (there will be so many more. i’m scurrred of ny cold and flu season), i thought i was just coming down with a cold. then, during the night, the little splotchy rashes spread up my legs, covering my torso and back in bright red spots.  once we confirmed that this was detoxing and not an allergic reaction to a medication, i knew it was time to start back up. i was getting the pushback i’d been reluctantly waiting for.

so here’s the good news: i don’t have to go back down to washington d.c. this month. i have hit a stage where i can have my first phone consultation (i am going to miss seeing my chosen family there and celebrating my little a’first birthday. it’s been such a blessing to get to see her grow up through her first year)! not having to be in-office means that i’m getting some autonomy. perhaps it even means that this nauseating, painful round of iv antibiotics i’m taking this week, will be my last. i don’t know if that’s true, but it seems like a very viable possibility.

i am still having a lot of central pain problems. my skin feels papery, the roots of my hair hurt, the soles of my feet ache and it’s sometimes difficult to walk because of swelling in my legs. itching is also considered a type of pain. i didn’t know that one. but itchiness aside, my pain is significantly better than it was, but it’s not gone and it’s still pretty constant. the biggest difference is that it’s at a level that i consider to be manageable. i have no idea what it’s like to not be in pain, so i seem like the worst person to assess my situation. unfortunately, i am the only one who can decide that. because we’re seeing a decline in reactivity during treatment cycles, i’m getting closer to the end. but of what? of iv treatment? of antibiotic treatment? during my appointment, when i heard the words, “when your pain is under control then you’re done,” i was so excited that i didn’t even ask for clarification.

that’s the way it goes. my brain is still flittering around, hopping from one thing to another without resolving thing one, a lymies’ dance with ADD. i’m getting better. i can be pain free. i will be pain free. these are dreams i’ve had for so long, but if i put those dreams into my head, i don’t know how to make sense of them. isn’t that true of everything? so maybe i didn’t want to write about it because, for as long as i could, i wanted to keep it a feeling, an indescribable feeling of joy and hope. my machine mind will eventually macerate this news into digestible thoughts and then i should be able to translate how it feels to know you’re so close when you’ve felt far away from health for decades.

day three of this cycle is not nearly as bad as one and two. because i had low blood pressure, a fast heart rate, high, lasting fevers, immobilizing pain and unquenchable dehydration, we were moments from heading to the er yesterday. i was monitoring everything closely, rechecking my vitals every 15 minutes. after an hour we could see that things were starting to calm down. a severe herxheimer reaction can sure look a lot like sepsis. i ended up sleeping for the rest of the day and all through the night. good thing too, because i spent the hours between 3am and 7am awake, spun out, feverish and a little crazy on the night of day 1. i’ll take hypersomnolence (excessive sleeping) over hearing the birds start chirping while i’m frantically drawing a picture in bed. anyway, this cycle is hard, but maybe, just maybe, it’ll be my last…

here’s the news from your bed, in case you want to take a listen.

move your body?

September 5, 2012

i’m on a break, one that’s overflowing with plans and things to catch up on, friends i’ve neglected, reunions with people i haven’t seen in years, a broadway show (the book of mormon) and scouring the northeast for interesting antiques. after all, it is brimfield this week. unfortunately, antiques are always overpriced out here. for the record, items from the 1980s and 90s are not vintage (or am i just getting old?). when i see stuff my family used to own, that wasn’t that great to begin with, with a $400 price tag on it, a part of me wants to “accidently” knock it to the ground and then act surprised at the broken shards scattered at my feet. i wonder if that’s how my grandparents, who were collectors and antique dealers, felt when they saw their childhood toys displayed as “antiques.” subsequently, i only know how to haggle when it comes to buying old shit, a skill i wish i had when it came to buying clothes i should not even try to afford. there’s something about having spent nine months with unwashed hair and stubbly pits, clad in pajamas worn three days in a row, that has prompted me to sporadically buy extravagantly nice threads. not only do i not have a place to wear them to right now, but i tend to shy away from events where such clothes would be appropriate. if i had the patience, i’d be cashing in on ebay listings. you don’t need or want to know any of this, do you? it’s raining. i’m rambling and i’ll stop now.

i’ve been off the no holds barred drugs for almost a week and aside from some focal seizures, central pain issues and a bit of anxiety and paranoia, i’ve been feeling good. aches and pains, yes, but my health has felt generally manageable. it’s a welcome relief after the previous two weeks of complete misery.

one of the difficulties of being on a drug holiday is that i don’t quite know what my body is capable of. i want to get out there, be active, interact with human beings (instead of dogs and a cat) and experience a semblance of a normal life, but i haven’t a clue where to draw lines. after two days of being with my partner’s parents (it’s great to see them. i’m not complaining about them), i was so overwhelmed that i passive aggressively sent angry texts to my dude for drinking an espresso i asked him to hold for me. we were in the car with his folks and i didn’t want my petulance to have an audible voice, so i harassed him via phone. my annoyance at not having caffeine, which i was calling inconsideration on his part, was really about the fact that i had overdone it and was completely exhausted. rather than listen to my body, i felt obligated to push through and keep pace with a group of healthy people. this behavior does me such a disservice. it wears me down and makes every waking moment more challenging. i ended up sleeping during the ride home, which is what i needed, not an americano.

i try to remind myself that i have no endurance, that 2012 has been the year of sedentary couching and that my untoned muscles don’t have the wherewithal to keep pace. my expectations are too high and my will too strong to be still enough to hear the soft call of what my body really needs. i’m not sure if i can or should start exercising, using the elliptical machine we bought this winter and building my strength back. i don’t know if this is the right time to do it. part of me doesn’t want to spend my holidays with sore muscles from intentional exertion and another part of me believes that this is exactly what i should be doing to help myself heal. there are so many pieces of the process of healing that i feel uncertain of. i don’t know if i’m doing too much or not enough.

years ago, during a hospital stay, i found a stairmaster. i hopped on and started pumping my legs up and down. within five minutes, my hands and feet were mottled blue and red. my entire body felt numb and i was dizzy. the hospital staff called in a doctor to check me out. i was told that this was too much for me, that i shouldn’t try to workout. i think that many years later, that experience is still dictating what i believe i’m capable of doing or what i should be doing. i need to clean the slate, start over and slowly experiment with exercising (other than yoga, which has helped me a lot). as i get healthier, as i continue to eradicate these tick-borne diseases, my needs are changing. figuring out how to keep up with those shifting conditions is a task i think i need to devote more time to. there’s no marathon in my future, but maybe i have room for ten gentle minutes on the elliptical.

 

all by myself.

August 25, 2012

i’m on my own tonight, the last night of my current regiment, and i had to make some battle preparations, just in case. i’ve determined that i’m ready for whatever is going to come next.

over the past two months, i’ve been able to chart a clear pattern to my most recent reactions to the last few cycles of antibiotic infusions. the episode begins just before the bag finishes or just a couple minutes after it’s done. it starts with a slight chill, like the a/c is on just a few degrees too cool. i have somewhere between five and fifteen minutes before the really intense cold hits me. at that point, i start to shiver, sometimes uncontrollably and occasionally pretty violently. my lips turn blue. the blood in my hands and toes recedes. my body acts as if i’m stuck in my car in a minnesota parking lot in february, waiting for someone to rescue me (that happened. it took an hour for someone to come jump my car and it took four days for feeling to return to my fingers). psychologically, i actually feel like i’m waiting to be rescued from freezing temperatures. i continuously ask whomever is around me if they are cold. if so, how cold is it? what’s the temperature? can they look it up? it’s hard for my mind to understand that this severe drop in temperature is only affecting me. generally, my body temperature is in the range of normal while this is all going down, which only confuses me even more. there have been plenty of instances where i’ve run a high fever while feeling like i’ve been left in the arctic circle. but i’ve never had a low-grade fever while experiencing this. my skin feels windburned and hypersensitive. this is a central pain problem, but it worsens with the iv abx.

i tend to have many small seizures, most of which affect the right side of my body. my legs, back and hips stay in perpetual motion. i rub my feet together while pushing and pulling my knees up to my chest. i take clonzepam, a benzodiazepine that, among other uses, can be utilized as an anti-seizure, anticonvulsant and muscle relaxant. it’s often prescribed to treat “restless leg syndrome,” which is a part of what i’m experiencing. its sedative properties help facilitate sleep. without it, i flop around whining, wishing i could just go the f*ck to sleep. it’s generally better if i take the clonzepam before all of this begins, but because i’m incredibly cautious about the amount and frequency of the narcotics i take, i probably don’t utilize preventative medications as much as i should. i tend to wait until it’s so bad that i have to take it as a rescue medication.

i have trouble focusing my eyes. my speech becomes slowed, slurred, or i stutter. it’s difficult for me to get my thoughts past my lips. i end up repeating myself over and over, stuck in a loop that i realize i’m in, but don’t know how to get out of. sometimes my hearing will go out in one ear (the right side, usually), but it comes back after a minute or so. there are stabbing pains in my inner ears that don’t last more than ten seconds, but sear like an icepick. while all of this is happening, i don’t seem to notice that my entire body hurts. from head to toe, muscle to bone, i feel like tenderized meat. even so, i can’t stop wriggling around, trying to practice self-massage on muscles i can hardly help, like my gluteal muscles. it’d be more useful if i could stretch them out, but my body is beyond that kind of self-help by this point. all i can do is poke at things that hurt.

sometimes i have headaches or migraines during this, but more often, i just have shooting pains that rocket through my brain, my eyes and ears. my teeth and jaw ache incredibly. parts of my body i wouldn’t otherwise notice, twinge and rapid fire sos signals to my brain. after a couple of hours, when the meds have really settled in, the episode ends with me collapsing into bed. i sleep for a few hours and then, no matter what time of day or night, i wake up for an hour or two. i go back to bed and when i wake in the morning, i feel like i went surfing the night before or like i was stuffed into a rock tumbler, a creepy attempt at polishing this dirty gem up.

five minutes ago, i finished the second of two antibiotic infusions. already, i’ve put on cashmere pants, wool socks, a heavy batwing sweater i can wrap myself in. i have the heating blanket and a thermometer on deck, a few glasses of lemon water, some coconut water and other “rescue” medications i might need if this progresses. the last iv antibiotic is the tygacil, notorious for causing naseau and vomiting, so i did take some anti-nausea meds beforehand. they’re holding my stomach at bay, but combined with flagyl, an antibiotic, amebicide, and antiprotozoal drug, the gates aren’t heavily fortified. while i recognize its importance, i hate flagyl. i texted my sweet nurse about the sticker that someone at the clinic has on their door that reads: i ❤ flagyl. she responded, “that person is a motherf*cker.” i laughed out loud. i wished she could’ve been sitting on the couch with me instead of all the way across the country. i find myself wishing that a lot. while i don’t necessarily want anyone around me while i’m running to the bathroom (for any number of reasons) or sleeping through the week, i often wish that i had someone to just laugh this all off with. in person. not over the phone. not via text. face-to-face, real laughter about my audible huffing (instead of verbally complaining) or the distinct possibility that i could crap the bed. now that shit, horrifying as it may be, would be hilarious, so long as i had someone here to cosign the hilarity. “you’ll never guess what i did last night…” in this scenario, my partner doesn’t count because, well, he’s not here tonight. though i do think, as a disgusting icebreaker, it would serve wonderfully to help us forget how painful the last few hours were.

my filter is clearly gone. i’m writing about shitting the bed. ack! serious digression. my pain is worse and the shakes are starting. the heating blanket is now on. i’ve got to get off this computer and get moving on the rest of my protocol. after all, this is what i planned for.

it’s after two am. i can’t sleep like this, my heart thundering in my chest and my ribs feeling vulnerably brittle. i feel as if i were to take too deep a breath, i would split my sternum and divide my upper body into separate halves. that’s this particular moment. in the minutes preceding these, i thought that i might suffocate if i didn’t get my socks, the unplugged heating blanket, the sheets and quilt off of me. i threw them to the floor in a grunting panic. how did i get bundled up like a christmas ornament in january? because i was freezing, my lips blue, my fingers wax bean white, my muscles rearing up and refusing to stay still. after infusing iv antiobiotics, i slipped in that all too familiar chill, my eyes twitched and my speech emerged halted, like someone who, after a few hours, had been found in the walk-in freezer at work. we took my temperature and determined it was okay to add in some heat to the scenario. my partner doled out “rescue” medications and listened first to my endless complaining (“i’m cold. i’m cold. i’m so, so cold.”) and then to my meltdown/lash out.

frustrated by my inability to express myself with words, body language, anything that might be telling, i felt as if he should be able to intuit what was happening and how to help. he should be telepathic. he should be psychic. at the very least he should have employed a jedi mind trick, crawled into my mess of a mind and extracted my needs and wants. well, he fell short. he’s no phan thi bich hang, a vietnamese telepath, but then who is? i just wanted help sitting up in bed so i could take a painkiller, but god forbid i actually let the words “help me” slip from tongue to lips. instead, i kept sliding my elbows up and down the bed, knowing that i didn’t have the strength to sit up, but stubbornly continuing to try. when he finally asked if i needed help (mind you, i had just given him a  lecture on not trying to rescue me when i’m struggling), i had already hit the silent treatment phase. i shut him out for a minute, apologized, said i’d practice asking for help, whined some more about my pain and then tried to go to sleep. see opening paragraph for how that sleep went.

my two week break from my treatments came to an end this morning. by the time i was able to get most of my new prescriptions in, it was closer to mid-afternoon. due to the intensity and the short duration of this treatment cycle, i can’t afford to miss a beat or any of the drugs included in this plan. i didn’t get my last medication for this non-stop, two week round until 9:45 pm. one of the pharmacists keeps complaining that she can’t read the scripts and that i should tell my doctor to write more clearly. ha! and i’ve come to discover that i am not the only one she has muttered this to. both my partner and infusion nurse got an earful from her regarding penmanship. is dr. j’s handwriting really the worst she’s ever seen? really? anyway, i took all the new oral meds throughout the day and then hit the iv antibiotics at night. i first infused meropenem (one i’ve used before) and followed up with tygacil (the latest and last of my iv antibiotic trials, which means i’ve now consumed all the meds on the menu, at least once).  tygacil is an antibiotic used to treat bacteria living inside the body. i was warned that it can and does cause vomiting and nausea for most patients, so that was the result i was expecting. instead, i felt nauseated most of the day and after doing the infusions, i went into that herxing mode i’ve been hitting lately. i’ve come to realize that the reactions i have the first time don’t necessarily mean that i’ll have the same results the next day. the only thing i can count on is not being able to count on anything. reassuring, isn’t it? but if i’ve learned anything, i’ve also learned to roll with the punches. what’s that old japanese proverb? fall seven times, stand up eight? by now, i’m way past eight. i’ve been brought to my knees time after time but i manage to find my feet.

for the last couple of doctor’s visits, i’ve come away thinking that we were killing biofilm. i remember dr. j telling me that in every cycle, we’d be hammering and chipping away at the lyme disease, but we’d target other tick-borne illnesses in varied bursts. this time, he was quite specific, informing me that this drug cocktail was created to open it [biofilm] up and then quickly “zip it closed,” killing everything that’s released into the bloodstream. it was my understanding that this biofilm is composed of, not just lyme spirochetes, but also of babesia protozoa and bartonella parasites. it’s a living, growing colony comprised of all the great invaders and, most likely, a number of infectors that i don’t even know that i have. my body is like a clown car for infections. because the immune system cannot penetrate the biofilm, the bacteria are dormant. yeast and protozoa react and are released into the body where they can be killed.

in addition to this first week’s iv antibiotics (mentioned above), i’ll add in an extra dose of meropenem on sunday and start infusing iv cipro on sunday. my medications and dosages change on a daily basis, which is complicated to track. i’ve been totally overwhelmed by the schedule. the rainbow of highlighted drugs and indecipherable shifts in frequency and dose made me want to collapse on the spot or run away. now that my nurse has cleared it all up for me, i’m in the know. i’ve added dapsone in combination with pyrimethamine, a duo that’s used to treat malaria (say hi and bye, babesiosis!).  i am also taking high, high doses of artemisinin, a naturally sourced anti-malarial. we’re using leucovorin, a drug often used to treat cancer patients. it functions by protecting healthy cells (particularly in bone marrow) while still allowing the medications to penetrate the cells. also on the bench are flagyl and diflucan, just waiting to come into play on thursday and friday. since i do pulsed treatments, short, intense bursts of drugs separated by time off, i’m used to having at least the weekend. this time, i am going full-force. i’ll be infusing abx every day next week, also a first for me.

these two weeks scare me. i’m already having some flaring of psychological aspects of these diseases. my fuse is short. i’m intermittently weeping. i’m anxious for no reason and stressed out about things that are way beyond my control. i’m having a bit of a hard time. some of this, a lot of this, is probably due to the fact that i’ve been gone since august 3rd and i didn’t get home until the 18th. i drove over 2,000 miles, 1,100 of those with no airconditioning in 90+ heat. have i mentioned we need a new(er) car? that stresses me out too! with company here last night, today was my first day at the house by myself in weeks. it shouldn’t be surprising that my mental adjustments aren’t lining up the way i’d like them to. by the end of writing this, my stomach is lurching and i have the feeling i’ll be bent over a bucket in a few minutes. i guess that whole nausea/vomiting warning was right. no matter, i have one day down and thirteen to go. however bruised, broken, bloodied and battered my spirit and body are, i can always stand up. one. more. time.

it’s a saturday and, as such, i have two days without antibiotics, artemisinin and mepron (<–the florescent yellow syrup that makes me want to collapse into a dramatic heap and whine to you about how much i hate it). oh, my beloved weekend reprieve. having come off of a treatment week that was hard, but not excruciating, this weekend won’t look anything like the last one (that marked the close of a whole week off).

last week i partied.

partied, in my case, is a relative term. i’m still a shadow of the person i was, though i’m gradually transforming into the person i always wanted to be. when i say i “partied” it’s hard to tell exactly where last friday and saturday fell on the spectrum. sure, i slept past noon afterwards, but i haven’t stayed out til 3am in over five years. it’s hard to explain, but i felt like i was enjoying myself in a different way than i have been. and, on saturday night, i sang karaoke from the couch of a friend’s weekend house. karaoke! i suck at karaoke which embarrasses me because i sing. to up the ante- this was hardcore, serious karaoke with a projector, high-quality mics, and a mixing board. this karaoke machine can transpose songs to a different key. i wish i would have used that feature… later, once everyone else was half in the bag, my sober ass played ukulele and sang by the pool (yeah, this weekend house is pretty killer). when a drunk, queeny sweetheart in a tiny floral pair of swim trunks said, “you sound like an angel. that’s the best version of hallelujah,” i felt a flicker of the old me start to burn a little brighter.

as i’ve talked to more and more people suffering from chronic lyme and co-infections, i’ve discovered that many of us feel as if we are acting-as-if much of the time. when put into social situations, we remember appropriate responses and we respond accordingly. i’m not saying that every member of the tick-borne illness lyme club, failed to retain their social graces. i can only definitively state that it has happened to me, and it happened so gradually that i didn’t notice it until it had completely interrupted my life. outside of my family and some really close friends, human contact became anxiety provoking and prevented me from basic interactions. i’ve had the best excuse in the world in my pocket: i am sick. i don’t feel well. tell your friends i’m still a feminist, but i won’t be coming to your benefit. these haven’t exactly been cop-outs. indeed i have felt like shit, and coupled with my fears, i couldn’t bring myself to rally and walk out the door.

somehow over the last decade, i’ve come to a place where i’ve had to wing the majority of my quick stops at parties, gallery openings, small couples dinners and sweaty, sapphic dance events. my closest friends and my partner, all say that can’t seem to tell. secretly, i’ve felt disingenuine, but i’ve not seen any other choice. it doesn’t hurt that i’ve always been a pretty decent actor, but then aren’t we all? who would know the kind of pain we’re in as we politely decline the canapes that have circled our way? how many people in a crowded room will notice if one person slips out? a simple goodbye to the host and you’re out of there, hailing a taxi and going back to your hobbit hole. okay, i don’t actually know what you do. this sad scenario is the one i act out. i don’t stick around because i feel like i can’t.

i wonder what this social phobia, this inability to be my genuine self, this emotional lability, is all about. where i was once gregarious, i grew timid and meek. the confidence i had, the ability to perform music and poetry, to emcee events and speak at community hearings, slipped away. i felt i was no longer meant for the public. if i played music for a crowd, i quickly found the back door and ran to my car.

i’ve come to believe that once the infection passed my blood-brain barrier saturating my brain with spirochetes, real damage was done. more specifically, it’s the prefrontal cortex that i think was affected. this is the part of the brain that controls social behavior and personality traits. the gradual changes i experienced could easily have been caused by a growing infestation of borrelia burgdorferi, creating colonies and biofilm, taking over the most precious part of my body. while my family was scared and almost certain that a latent mental illness was slowly surfacing, i felt convinced that these changes weren’t really me. i felt that they were symptoms, that is, until i forgot that i used to be this other person, someone who wasn’t frightened all of the time. i couldn’t remember the girl/woman who always pushed through anything that stood in my way. back then, i had steadfast moral and ethical beliefs for which i fought tooth and nail. so when did i start signing internet petitions, crossing my fingers and hoping that i was still making a difference?

my theory is anecdotal. though it might exist somewhere in the vastness of the interwebs, i don’t have scientific proof to back my claim. all i have are the stories that people write to me, the sadness of lyme riddled friends who wish that they could laugh with their whole heart and body like they used to, and the weight of my own realization that i have been slowly fading away, losing myself, and wistfully wishing that i could be more like i used to be.

i still enjoy life. i love fully. i laugh. i feel empathy and sympathy. i didn’t morph into a sociopath, i just lost some of life’s exquisite light. it’s as if i could see it, but i couldn’t feel it anymore. as my treatment progresses, as i start to have nights where i can read lyrics off of a wall, shout/sing george michael’s faith, roll into my driveway while the neighborhood sleeps and think “that was fun,” i feel a sense of gratitude and relief. i’m climbing out from under my boulder, dipping my toes into the water and slipping my own skin back on. i’m coming back to me and this feels priceless.

this weekend won’t look like the last one and that’s alright. i don’t feel terrible, but i don’t feel great either. thems the breaks. and i am truly thankful for having both experiences because i can see the spectrum expanding. “can you rate your pain on a scale of one to ten?” nope, not anymore. there’s no scale that could measure the joy of starting to feel vivid emotions again. pain pales in the presence of being present. i don’t want to miss out on anymore of my emotional life and it looks like i won’t have to.