“well, you look good.”

February 10, 2015

why, thank you, new medical specialist number three in 2015.

it’s interesting how desperation has the potential to suddenly adapt and transform itself into armor. it’s like the feelings that accompany every step leading up to the point where one knows they could be easily identified as “desperate,” those feels create a patina. that weathering and aging, it fucking hurts. it really does. because every moment we decide to try one more time, one new thing; whenever there is another hope had, another fuck given, we have to be vulnerable somewhere. maybe everywhere. there are so few easy answers and so those layers of vulnerable-to-wound-to-scab-to-scar-to-freckles-to-memory, they all add up into this patina, the armor, this quiet and subtle storying that speaks our histories in the most powerful way possible. it protects the parts of us that have to stay intact.

it’s is not impregnable. the protection of our stories, our voices, our being through all of these moments is valuable, priceless really, but it comes with a cost. it comes with memory. memory means that pieces of me actually experience it all again when i say to New Doctor, “i literally did not know if i could survive the blistering,” i feel echoes of my skin on fire and the still air around me burning my body. i know that the words i’m using are not making it past the distance between me, the messy table and this New Doctor. my hands are running along the metal edge of my medical binder, seeking comfort in lab sheets and my own statistics. i use plain language with her. i cannot bring myself to verbally tell this woman what i have gone through because she cannot possibly understand. i want that to be okay. i want for it to not matter to me, but it does. if she understood, it would change something. it would create a kind of empathy that would be exhausting for practitioners to have… but wouldn’t it be incredible if more of them did?

but most of the specialists i see, we’re not having that kind of shared experience. we’re both seeing dollar signs we don’t like very much. they see a hot medical mess and i see someone who doesn’t know how to help me and doesn’t have the time to try. it’s understandable. it sucks, but i get it. being sick is my full-time job and still, i would fire me in a heart beat. i go off the job all the time. and i mean, like, all. the. time. it’s not like i can just stop feeling crappy, so when i say i quit all the time, i mean that i give up the navigational reins for a minute or two. i can’t keep pace with myself. i can only binge do this. so however often i have to and i can, i buck up, research until my brain is completely socially dysfunctional, make appointments, research more, see doctors, pay more money than i could ever possibly have, get labs, get more labs, switch this and that, add this and that, pay this and that, see doctor, do research, repeat.

and then i collapse into a treatment.

that’s ridiculous. that previous, standalone sentence, “and then i collapse into a treatment.” it is, perhaps, one of my more significant/problematic issues. if i enter treatment cycles completely depleted, what do i think i’m fighting with?

to my credit, this round i am strategically gathering information. i’ve made a contractor analogy to verbally trot this healthcare binge cycle out to my support people, or anyone i spend any time with because, whatever, i talk about this shit. it’s my life and it’s often all i have to offer up. i try to make it the least depressing possible, but i don’t conversationally avoid my own truth. yes, i feel like a downer. so many restrictions have changed how i move through the world. anything could set my system off. i’m that person at any restaurant. this feels uncomfortable, being someone who has special needs and has to voice them, but growing a place of tolerance within myself to create safer spaces is critical. it’s vital to me getting well.

anyway, i’ve found that this construction/renovation analogy works best. i’m the fucking contractor. i can’t know everything, but i’ve got to know basics in as many areas as i possibly can in order to effectively do my job. i have to be objective, which is an almost, if not actually impossible, ask. i am trying to build new priorities into my job, like getting a massage once a month, in my neighborhood so i don’t have to travel to do it. i’m trying to work through the emotional pains of a life of chronic illness. i go to therapy every week. i hear my repetitive self. i see the patterns. i want to change those patterns, neurologically that’s completely possible. keep learning. put brain en mode. i enrolled in pottery classes at a local college. i’m writing in a notebook again. i’m painting, drawing and cutting a mixed media piece for a friend. i am making plans and trying so hard to get the dates right and get the days correct. i’m trying so hard to show up and to just be present. i’m engaging in more arenas of my life and that’s both exhausting and good for me.

sometimes i forget i’m human. i feel unteachable sometimes. i feel alone and loved and i loathe the palpable desperation that i often feel to get well. when i have these moments where it feels like i’m doing everything i possibly can do to propel myself forward, when i am doing the very fucking best that i can do, it’s as if those desperate feelings have congealed into something that i can just accept, something that makes acceptance possible. just in this moment. for just this second, i can breathe (though not always deeply or easily) and i can just see why. not how. why. i know why i am. these moments, however many of them i can have, are the gifts that make survival feel not only possible, but totally worth it.

and that’s a lot fucking better than season nine of a show that i will not publicly name.

let’s not put it in stone.

September 25, 2014

second and third opinions solicited. panic predominately over. i have a significant hearing loss. this is to say, i know my hearing is more than marginally impaired. i’m not willing to condemn myself to anything being permanent and i’m certainly not going to acquiesce to the truly unfounded notion that in just a couple of years, i’ll be profoundly deaf in both ears. i’m cutting out ototoxic medications. i’ll be wearing my protective ear-gear when i need it. and as this hearing loss has been cooking, i’ve already discovered ways to compensate and adapt. i’m sure that as this all evolves or dissolves, i’ll continue to find ways to survive and make do. this is, after all, the way that those of us who have been living with chronic illness for this long have learned to make it through. the hits might keep coming. and we might find ourselves needing to dig deeper to answer the call. we may be constantly pushed to the edge of what we think we can and cannot handle. it might not look graceful or pretty. we may have extended periods of anger, self-pity, depression. we might bounce back with an effervescent air about us that scatters clouds from the sky. the next day, that might be gone, replaced by dark and heavy cloud cover, one that blocks out the sun and beckons in the night. this is life on the roller coaster of lyme, tick-borne diseases, autoimmune illnesses, acquired syndromes and everything else that crops up on our radar.

i don’t remember buying this ticket, but i’m clearly along for the ride.

i had a long day yesterday, got stuck in traffic on my way back into brooklyn and started leaving pathetic messages on my partner’s voicemail around 10pm.

“hello? hello? you’re not answering, which probably means your phone died and that means you’re not going to hear this in time to prevent my untimely demise. i’m starving. everything will be closed by the time i get in. i haven’t eaten anything today… okay, i have eaten, but not enough” then i list the things i ate. “see? who could be satiated by coconut bars? i need food. real food. need… all right. well… i love you.”

then i left a similarly pathetic message about twenty minutes later. shortly after, to my surprise, i got a call back. the bear’s phone was not dead, for the first time ever. “you need me to feed you?”

“yes. yes, please.”

“i’m by pies & thighs.”

“i can’t eat anything at pies & thighs, you torturous dick.”

“ha. i know. okay. a bodega?”

“bodegas are always open. i want real food. i planned poorly and now i’m starving.”

this went on and then the sweet bear promised to find me food i could eat. when i came in, there was a box of scallops, artichokes and corn that looked pretty delicious. “i asked them a bunch of times. they checked with the kitchen. there’s no gluten or anything in it. you can eat it!” so freaking thoughtful, this one. i gratefully and happily devoured it, so quickly that i didn’t give myself the moment it takes to know i’m eating something that isn’t going to work out well for me. i think they thickened the sauce with wheat flour. blerg. almost instantaneously, my distended stomach tried to up and escape my body in an six hour long battle that left me in a rumpled heap on a pile of blankets, fighting the frenchies for leg real-estate in my new floor-bed. man, when those dogs want to be heavy, they’re 50 pounds of defiant dead weight, locking down the down softness. after hours of vomiting, whimpering, drooling and whining “you poisoned me,” i finally fell asleep in a little ball on the floor, where i remained for the next fourteen hours. i woke only to try to shove the meatballs farther down the blankets. i was never successful. they tag teamed my bed and they won.

the deeper i’ve gone into healthier life choices, the harder i fall when i mistakenly step off the beam. two years ago, gluten would have given me a swollen belly and a headache but not felt like i ate actual poison (and that’s really what it is to me. i’m not talking bandwagon here. i don’t know what works or doesn’t for you, but gluten tries to kill my guts and i’m not interested in that fight. at all). before i cut most chemicals out of my foods, bath products, laundry detergents, i know i had some type of reaction, but nothing like i do now. the chemical sensitivity shit is tough. someone’s perfume might set off an asthma attack for me. i now carry a mask with a charcoal filter in my purse for such occasions. the mold in my house is an invisible barrier that keeps me out. exhaust fumes make me dizzy and nauseated. i washed my hands with unscented dial soap at someone’s house, scratched my eye and the damn thing swelled shut. am i becoming more sensitive because i’ve really limited my exposure OR have we created a world so laden with toxins that we’re all headed down this path sooner or later? i know which i think it is. my partner, healthy as he is, is also noticing a decreased tolerance for chemicals in everything. he believes it’s because he just doesn’t have the same exposure that he did before he was partnered with a bubble-person. on an individual level, maybe it doesn’t matter. my long-formed response is the same- i’d like to be oceanside (pacific, please), in a small abode with solar panels and grey water recycling, growing my own food, composting, collecting rainwater, tending to my menagerie of animals, surfing each sunrise and battening down the hatches with a community who shares a similar vision.

in the meantime, maybe i’ve learned my lesson about take-out food. my aching body got schooled, but my still-swollen belly might need another round. i should have gone with the bodega. how often can you say that?

the greatest hits.

September 19, 2014

some days, you think you’re going to make it. you think that it will eventually be fine. you weather the storm the best you can. in the end, you might find some clear skies and peaceful nights. some days, you’re in the eye of it all, unable to see your hand in front of your face. the darkness feels impenetrable and terrifying. most days, you just are. you wake up in whatever state you’re in and you get through each hour however your body and mind will let you. you put on a brave face, it’s just about the only one that you have. you stay strong, whatever that really means. you put one little foot in front of the other and just keep moving. you know what happens when you stop moving. so you clean the house, because you’re the only person in your household who hardly leaves and you do it because there has to be some order to the chaos of your life. you just keep going, pushing, trying.

you go to doctor’s appointments. you get labs drawn. you write witty banter on the internet with people that you once saw in the flesh. you research anything and everything. you become an annoying know-it-all about things like the draught. you fall down rabbit holes. you laugh at people’s angry reviews of albums sold on amazon. you make secret dreams. you write poetry you don’t read to anyone. you draw pictures that end up in folders under the bed. you paint pictures that might be painted over later because you’re too tired or too broke to go buy new canvas. you take photographs that get buried on hard drives and old laptops. you lose images in boxes of undeveloped film and binders full of negatives. but you make do and you make nice because that’s easier than wallowing or reveling in misery. and then sometimes, you take a hit you didn’t expect and you find yourself falling into that pit, that loneliness. you drive home from another borough using all those kleenex you keep in your car in case the dog’s snout is covered in mud or your passenger has an allergy attack. the this is the kind of hit where you don’t want to tell people who love you how you’re really feeling. you watch helplessly or listen over the phone as tears line their cheeks and you kind of wish you hadn’t said anything at all. why take anyone else down with you when you’re falling this hard? why share the burden when there isn’t anything that they can do to help, when everything they say or do feels wrong? when anger and grief keep you from finding sleep at night? why give that to anyone else?

there’s always something around the corner, isn’t there? something just out of reach, just out of sight? just out of ear shot? there is, i know, but right now, i’m not looking there. i’m tired. i’m so tired of getting “bad” news. i’m tired of seeing doctors who have no idea how to look at the whole picture or who have discounted my symptoms for years. later i discover that i’ve sustained permanent damage from medications that were experimental. i sometimes feel like my medical gains are nothing compared to the losses. and today, it’s one of those days. it just is. please, don’t try to comfort me. it’s not the kind of day where that feels good. and i’m writing about it because i believe we all have these days. for me, when they’ve passed, i’m buoyant again. positivity reigns. i want us all to forget that i get down and depressed like this, but i’m human and imperfect and deeply flawed, like all of us. so i’m writing it because it’s real and sometimes, this is the only way i have to let go.

two weeks ago, i took a few hits to the head when a shore break hit a rip tide and i plummeted from the top of a wave to the sand, only to get pummeled by the swirl of waves coming in on the current. there’s a part of me that loves getting rolled by the sea. it reminds me of how small i am. when i’m floating around the pacific, my powerlessness is palpable. for some reason, i’ve no idea what, i can hold my breath for about three minutes, give or take. i don’t panic. i go limp and let myself get tumbled around like seaweed on the sands. but this time, i got sand in my ear canal and water in my middle ear. since i can’t take antibiotics anymore, i used colloidal silver and then just wore ear plugs whenever i went back in the water. i figured that if it didn’t go away, i’d just take care of it when i got back home. my hearing was severely compromised by the fluid and by the “pebbles” that were lodged against my eardrum.

so deep in the heart of flushing’s chinatown, i saw a cute, butch, ent who suctioned out sand with a horrible little stainless steel tube. she chastised me for wincing and said things like, “this doesn’t hurt. you have to stay still.” i can’t even have the car windows rolled down because it hurts my sensitive little ears. a vacuum up against my eardrum wasn’t exactly a walk in the park.

then i was sent off to the audiologist, who was, for lack of a better term, a total asshole. when she was done testing my hearing (which i’ve had done so many times in my life i knew i was missing at least a third of the sound cues), she said, “you have complete sensorineural hearing loss at 5000 and 6000hz and above and your loss at 4000hz is substantial. this is where you hear voices. in the next few years, that will go too. you will become deaf, for the most part.” i asked questions. she gave crappy replies. and my mom is an audiologist, so i’m pretty sure i was asking in the right arena. i wanted to know how she was so sure that this was sensorineural loss, permanent loss. she gave me a terrible non-answer. i wanted to know why it was sudden. she ignored me. i wanted to know how these results can change, considering that i just had nine chunks of rock sucked out of my ear. she was dismal, rude and mean. i wanted to cry, but nothing about this interaction made me feel like it was safe enough to even blink back a tear.

then back i went to the ent’s office where i was seen by the doctor i went to before my lyme diagnosis. he told me the same thing- i have significant hearing loss and it’s most likely progressive. “but i’m a musician. i’m a singer,” i said, desperation so thick in my voice. “there has to be something we can try. my brother-in-law is an otolaryngologist and a head and neck surgeon at stanford. if there’s surgery, if there’s anything, if can do anything to try to keep my hearing, i’ll do it.” there’s nothing we can do, my doctor assured me. “but this just got worse,” i told him. “it wasn’t like this before i went down in that wave.” this piqued his interest a bit, but my replies left him back where he started. “we could try high dose steroids, but it’s likely they won’t help.”

“fine. prednisone? i’ll do it.” i was on high dose steroids for years before being diagnosed with lyme (which, by the way, can be really dangerous and cause permanent damage, so please research and ask questions if ever a doc tries to give you steroids. i didn’t know any better back then). i told him (again) that i believed this is mostly likely nerve damage or ototoxicity. “oh, you were on ototoxic drugs?” yes, dozens of them. i’ve never been off of all of them, so for about 18 years, i’ve taken medications that can cause permanent hearing loss… only no one ever told me that. he had the secretary write up a script for prednisone, which i don’t fill because i already have it back home. i’m told to not expect a miracle. i didn’t tell them that i already am a miracle. i bit my tongue and my tears and made the long drive back to my hood in rush hour traffic.

and then i cried. i cried like i’ve never fucking cried before. for about two minutes, i drove like a complete asshole because i just wanted to feel something other than the sadness that i could’t push out. alone in my car, i had to admit to myself all of the ways i’ve been progressively compensating for my hearing. i now read lips, a skill i always wished i had as a child but never actually honed. i always watch television with closed captioning otherwise i don’t know what’s going on. i constantly ask people to repeat themselves. i need to see their mouths moving. the ringing in my ears combined with the static-like interference has prompted me to always have multiple sources of white noise on to drown it out. i cannot be in silence because what i hear is deafening.

i want them to be wrong. i want so badly for the three professionals i saw to be horribly wrong about their diagnosis, but i can’t completely discount it. they might be right. i disagree with the severity of the loss and that being completely irreversible, but i do know that my hearing is worsening and that scares me. music, singing, playing instruments- those are my lifelines. that’s what keeps me going. it’s sound. i don’t know what the world will be like without it and i don’t want to know. so i’m swallowing handfuls of prednisone, putting my faith in this hail mary and not in the doctors and resolving to change how i’ve been consuming meds and treatments. after i get through this round, i’m not going back to western meds, not for a long time anyway. not until i’m desperate enough to believe that what has made me worse will somehow make me well. i’m going to do anything i can to get my health back, but i’m not going to do this under the thumb of big pharma. it’s in their best interest to keep me sick and quite honestly, i just don’t want to play anymore. being told that i am going deaf is a new greatest hit for me and i know that means that i have to make some major changes to my approach. for a long time now, this hasn’t been working. i’m making changes and going back to my natural roots, when drugs were the last thing i reached for. i don’t know where to go next or what to do… but this just isn’t working anymore.

maybe it’s time to face the music? yeah. that.

my therapist asked me a couple of months ago what i would want to be doing if i wasn’t sick. “if you can, just try to take the illness off the table. if you could do anything, what would it be?” i can’t remember what answer i surfaced with, maybe something about wanting to really kick into high gear on this documentary. then she repeated the question. again, i gave her some unsatisfying answer about finishing the house. the house? really? my undying dream is to finishing repairing some stingy, selfish, 91-year-old man’s moldy house? aaaaaand she asked me for a third time, “if you could pursue any dream, without limitations, what would you want?”

silence. i lowered my gaze to the ground, tipped my head to the side as if thoughts might fall out of my right ear, into my palm and i could just hand them over to her. “uhhh… i guess… i’d… just…” and then i stopped trying to give an answer and genuinely contemplated what she was really asking for- my dreams. and this question would be an easy one to answer if it was about anything else, but my dreams have been tempered, shaped, hacked at and stunted by these 15 years of dis/ease. 

“i don’t know,” i said. “i have no idea.” i stared at my feet, soles up on my thighs, sitting on the gym mat i favor when i’m in her office. she looked at me with kind eyes, waiting for me to catch up. “i can’t remember the last thing i dreamed of that i was able to manifest. i mean, not that i don’t finish anything or do anything, but… i guess i just stopped really dreaming. i have moments, moments that i want something, but it’s never without knowing that i might get sick. i might be too tired to even start, let alone follow through. everything that comes out of my mouth feels like bullshit because they never become my reality.” then i was quiet again. and let’s be real. i am never quiet. i don’t shut up. i have a filter but it’s nearly defenseless against the zillions of thoughts that come flying through my somewhat unhinged brain. at least 75% of photos of me feature either a derp face, mid-sentence or there’s food in my mouth. i’m probably trying (and failing) to look sexy in the other 25%. best guess.

i remember when the world felt wide-open, when vision, passion and conviction drove me through each day. i woke up like that. i had trouble falling asleep because my mind kept concocting ways to tackle what was on deck, how i was going to execute the next steps in whatever plan i had running. and i used to say things like, “i’m really glad that i had the opportunity to be this incredible kid because at least i got to do it in this lifetime.” i said this smiling and on the inside, aching. there’s a piece of me that feels like i got robbed, that knowing how my life feels when i set goals, achieve them and surpass them is like a cruel trick for someone whose general daily goal consists of getting out of bed to feed the dogs. twice. this is self-pity at its best, i know. but the truth is, i am afraid to want anything anymore because i’ve been beaten down by my inability to handle much more than the day-to-day of staying alive. 

to say i don’t dream would be a colossal lie. i do. but there’s a cruel cupid inside me that takes aim at those dreams with arrows poisoned with doubt and fear. some days, those fears are paralytic. take today, for example. my shoulders and right arm have been thickening, freezing and smarting something terrible. i’m getting tension headaches and migraines from the pressure in my upper body. my skin feels a lot like i went to a sadistic korean spa and had the top four layers shaved off by a rough towel and strong hands. i spend a lot of time sitting on my bed, feeling guilty for being unproductive. in my stacks of papers are dozens of handwritten lists of things to do. often, even if they’re months old, i couldn’t cross more than three things off of them. when i was teenager, i’d never have believed you if you told me that organizing a cupboard in the kitchen would be a big deal. i’d have thought you mad if you said i’d be afraid to take public transportation because my risk of infection would be so high. if you said that i would spend most of my time in front of a computer screen, reading research, watching videos of french bulldogs nurse baby tigers and lurking around social media, not posting because i didn’t want anyone to know that i was stalled out in my apartment, i’d have thought you were off your nut. i could never have imagined that life might look like this.

this is not self-pity. this is fact. on the real, i’m not always in this desolate emotional place. my feelings aren’t consistent about my value or contribution to society or community, but there’s a consistency to my actions that isn’t anything i’d ever dreamed of. i do believe i’ll get well. i believe there is a life, somewhere just out of sight, that’s fulfilling, less physically painful, that’s lived offline, that’s filled with laughter and playfulness. i dream that i will dream again, without the parameters of all the “i can’t do’s” and the sharp edges of dis/ease.

i know that this is not purgatory. i did not knowingly ask for any of this. there is no sin to be cleansed by way of my physical suffering. this is just a part of my path. but some of us don’t make it off this path. some of us cannot take another day in these crumbling bodies. it’s heartbreaking to lose gifted, beautiful, magical, compassionate and loving people to this disease, but it happens. and i understand it. my heart feels heavy and swollen for all of you who are suffering out there, feeling alone and loved at the same time, wondering if there is another side to all of this. i want to reach into your worlds, tell you that however you have to make it through this is okay, that maybe the other side is next week or maybe it’s really another lifetime. and even so, i want you here. i want to tell you that i don’t know what tomorrow looks like and that in spite of everything, i still believe there are days ahead where your body won’t pulse with each breath, your mind so aware of every ache and pain that you can’t think beyond the walls of your bedroom. if i could reach out and give you the hope i hold, i would. 

whether or not you know it, there’s an army of lovers who have your back. i got your back, even when mine is up against a wall, even when i am too scattered and tired to return your emails. and if you are suffering and think you cannot take anymore, please pick up the phone. please call someone who loves you. please tell them because maybe you’re their strength and without you, they don’t know how to face these realities. maybe they can help you. maybe they can’t. but know that you are not alone. you can’t be. someone carries you in their heart, even when you can’t feel them with you. someone is dreaming of a life where you’re not suffering anymore. 

to my friends who are mourning the loss of their friend, never stop dreaming, even when it hurts. 

rest in power, amazon sister. 

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

i’m in a presentation, by dr. amiram katz, neurologist and assistant professor of neurology at yale university, called “IVIg treatment for autoimmune issues in lyme disease: II. neurodegenerative and other neuro inflammatory conditions.” my attention span is powering down, largely because the cost of IVIg (intravenous immunoglobulin) treatment is so astronomical that many insurance companies will not cover its use. in the lyme world, it is typically administered under the care of a neurologist or neurosurgeon. this posting does not cover the myriad of potential uses for IVIg therapy. if you’re interested in reading more about how it’s being used through different medical channels, click here. what i’m writing here is pretty limited to what i’ve heard at this conference and have a very small knowledge base of IVIg therapies beyond that. this is the second or third lecture i’ve been to where IVIg is the heart of the research, but i’ve heard it mentioned in many of the presentations. tidbits from those other lectures will no doubt be included. please feel free to comment on it if you feel you have information relevant to neuro-lyme or neuro-inflammatory conditions.

so what is intravenous immunoglobulin? according to BDI Pharma, a pharmaceutical distributor who provides this blood byproduct, IVIg is:

a sterile solution of concentrated antibodies extracted from healthy donors which is administered into a vein. IVIG is used to treat disorders of the immune system or to boost immune response to serious illness, and to treat immuno-suppressed recipients of bone marrow transplants. Antibodies are responsible for defending our bodies from pathogens, such as viruses and bacteria.

according to dr. katz, it takes 50,000 donors to create a viable product. this is done through a very extensive process of refining and cleaning, washing the blood. he states that about 10% of 5,000 patients required IVIg therapies. it has been preliminarily successful in treating complications of lyme, but not lyme disease itself. it should not be used as a treatment for lyme and as such, lyme protocols should still be followed. in cases where the patient has severe neurological symptoms and has undergone typical treatment avenues with marginal or minimal success, this patient could be a good candidate for IVIg. interestingly, dr. katz believes that chronic lyme disease is actually an autoimmune disease, which is something that my lyme literate rheumatologist has also stated. the majority of long term damage is caused by autoimmunity and inflammation, a theme throughout this conference and the lyme world.

how exactly IVIg works in the body is still unclear, though it does seem to temporarily create necessary antibodies in patients who are unable to produce them on their own (immunodeficient). IVIg can also be beneficial for patients with autoimmune diseases, conditions where the body has an excess of antibodies and subsequently, they turn on the body and attack the patient. IVIg seems to regulate the immune system in most cases.

IVIg can be used to treat an incredible array for diseases and has been particularly effective in cases with patients who have MS. over a ten-year period, dr. katz used IVIg therapy for patients with ALS. only two of twenty patients who received this therapy and improved. there was still a fatal outcome, but their life-span was extended by a couple of years. dr. madeline cunningham, in another presentation at the ilads conference, relayed that in pediatric cases of PANDAS (pediatric autoimmune neuropsychiatric disorders), after one month, patients greatly improved with IVIg treatment. OCD and tics were greatly lessened, if even present, after 3-6 months of treatment.

in the case of late manifestations of lyme disease, autonomic neuropathy is common. according to the mayo clinic, autonomic neuropathy can be described as “a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.” until now, autonomic dysfunction was measured by unreliable, costly and tedious testing. dr. katz, by counting sweat gland nerve fiber density, has been able to more easily diagnose autonomic neuropathy. his research is demonstrating the ability of IVIg therapy to repair autonomic neuropathy, which “and this repair might sometimes antedate recovery of small fiber neuropathy.”

due to the cost prohibitive nature of IVIg therapies and the fact that, for many diseases and conditions, it’s still in the experimental stages, most patients will not be good candidates for this type of treatment. however, those who have exhausted traditional, as well as more aggressive therapies, and are still suffering from severe symptoms, might consider consulting with a neurologist who is familiar with IVIg. who knows? maybe your insurance will cover it!

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.

 

down the rabbit hole

September 10, 2013

i’m pretty sure there’s not a bottom at the end of this mental tailspin. this is not to say that i am specifically in a mental tailspin, it’s really more of a wormhole, a domino of thoughts and i’m sharing it because

a) it’s probably going to blow my credibility and i might as well give that up sooner rather than later (do i have that? probably not. but it’ll blow whatever i have that resembles credibility).

b) you’ve probably taken your own sweet swan dive into this type of thinking and, god forbid, i ever let you think one single, crazy symptom is yours and yours alone.

here’s the good part: i’ve been off treatment for awhile and took a real vacation, sandy beaches, blue skies and all. two days before my departure, my dermatologist said to me, “hawaii is the last place you should be going right now.” thanks. it’s not like i spent my entire childhood dreaming that i would fit in there or as if the whole trip was planned and paid for already. oh wait…

"every time the tide comes in to take me home i get scared and i'm just sitting here alone" -r. spektor

my first time in the ocean in six years. kahului bay, maui, hi. such a sweet homecoming.   “every time the tide comes in to take me home
i get scared and i’m just sitting here alone” -r. spektor

she couldn’t have been more wrong.  i had the best trip i’ve had in ten years. i swam in the ocean. i climbed up a bamboo forest to try to get a wudan-like photo (the prednisone face really killed the modeling). i woke up early and snorkled in brutally choppy waters. i felt fantastic, as much as i could have ever hoped to. it wasn’t all easy and i didn’t feel perfect, but it was beautiful and freeing to, for once, feel like i was an almost-healthy person. i still needed naps and couldn’t be out in the sun for long, but natural sunblock companies should sponsor me. i slathered myself down every half-hour. i have to say that i wholeheartedly believe that just being in the ocean is healing. sure it’s lack of pollution, fresh air, clean water and sunlight, but the salinity and the calming effects of the waves? nature’s huge epsom salt bath with a built-in meditation session! and you know what? i freaking loved my hair out there. everyday was a good hair day. yeah. i said it.

so i’m feeling better, or i was feeling better until i got home to brooklyn, and then i felt sick. naturally, after years of medical skepticism from everyone, i asked myself, “am i really sick or was i just expecting to get sick so i did?” boo, questions. you’re shitty ones. the “is this somatic?” line could kill us all.

so, okay. not somatic. autoimmune diseases suddenly flaring up? lyme and co-infections telling me that my immune capital has run out? toxic mold exposure? environmental toxins? heavy metal poisoning? after all, i did used chew on those little lead sinkers. every time i went fishing, i’d stick one of those in my mouth and chomp on it until i could sculpt it. thanks, dad, for not noticing that those suckers were disappearing… into my mouth (don’t worry, dad. this is for show. it’s okay that you neglected me in the front of the canoe). right. *heavy metal poisoning.

the toxic mold exposure one is a horrifying and consistently expensive and repetitive one, one whose ultimate solution, get out of the house, isn’t within my grasp. just when we thought we had it well managed, three weeks ago a flash flood got us and the mold began all over again. i have someone coming out to address the external issue, the fact that our house is at the bottom of a very large hill and for 44 years, water has been battering the hillside of the foundation. it did not help our situation any that i granted squatter’s rights to the fat groundhog who lives under our front deck. to be fair, she has lived there longer than me, so her untimely eviction (ie: murder), didn’t seem right. in hindsight, this may have been a massively expensive twitch of humanity. i probably should have had her killed… you can’t trap and release them in new york and while i’m a risk-taker, i’m not so much the law breaker. fine. i’m lazy. i didn’t want to deal with driving a wild animal in a cage up a mountain and figuring out how to let it out safely. i also didn’t want it to go into someone else’s yard. also, i thought that she would just be replaced with any one of the groundhogs that live in my neighbors’ yards and woods. so. you pick. lots of reasons. none of them great. if i eat animals, which i judiciously do, then i should be able to kill one, but i’m a hypocrite.

i just spent half a paragraph writing about a groundhog because i really don’t want to talk about mold. i’m getting estimates for a costly but permanent solution and that’s the end of that topic, for now.

i have a point. i do. i want wellness so badly that just having a little taste of it, two weeks of it, has me back at that place where i’m pointing the finger at everything to find the cause of my return to dis/ease. i hate this place because, the truth is, i can’t rule any of these things out. and i think that to most people, people who are not or have not suffered from multiple chronic illnesses from which endless mysteries stemmed, think it’s crazy when you talk this talk. i sound like a crazy-person and having been an actual crazy person, i feel uncomfortable sounding like a nutter.

i have plateaued a bit on my lyme and co-infection treatments. i’m overdue for an office visit but i don’t know that my system can handle another round yet. more on that in a different post. i’m wondering what it is that’s holding me back from a full recovery. i’m looking at the holistic picture and i don’t like what i see (yes, mold exposure is an elephant in the room. but it’s a matriarchy and she’s not in there alone. though i had a handful of emails discussing toxic mold, i’m saying this to myself, mostly). it’s important to note that the scientist in me is thoroughly annoyed with all of this. the scientist wants a peer reviewed case study ON ME in order to believe that more is happening than autoimmune and tick-borne diseases. so what am i going to do? get those b-dry people out to my house and start at square one. you know what else i’m gonna do? keep an eagle-eye out for cheap plane tickets to hawaii.

*i am currently actually doing things to treat this.

fighting hair and nail.

July 30, 2013

a long time has passed since i discovered that missing patch of hair on the back of my head. in this case of lady baldness, a long time is a couple of months, i think, but maybe it just feels like longer. i did tell you it got bigger, right? well, it did. it got bigger. i started to feel this constant low-level dread every time i saw more than a few hairs lying about. i felt like my hair was thinning everywhere. i was constantly running my hands through it, poking at my scalp and sifting about up there trying to ascertain whether or not i really was losing more hair. now that clumps of hair are not slipping through my fingers and falling to the floor, i can say definitely yes. yes. my hair was thinning.

to make hair woes worse, it would seem my body isn’t processing or synthesizing something right. but what’s new about that? nothing, except that this is the first time i’ve had weak, striated, thin nails and my hair is breaking and splitting like never before. this could be from sjogren’s syndrome, one of my constant autoimmune diseases (some of the others come and go).  i’ve increased my calcium and zinc intake but neither seem to have impacted my nail beds.  i’m wondering if the nail issue isn’t as closely related to the hair loss as i had assumed. my best guess is that this is a condition called beau’s lines, horizontal indentations that mangle the surface of the nail. only my thumb nails are affected and i don’t feel self-conscious about it but i think if each nail suffered this affliction, i probably would care more. so other than vanity, should i care more? probably. i probably should. all these little issues, the ones that feel insignificant when paired against something like, say, an atonic seizure that leaves me in a heap on the floor, they actually mean something. if i could stay more aware, be a little more mindful of these changes, i would have a much clearer picture of what’s happening in my body.

so, beau’s lines… at some point in my childhood, during the days of manual car locks (somewhere there were probably luxury vehicles with one button that controlled all the locks, but they were nowhere near where i lived), i slammed my left thumb in the car door. my thumb was lodged in the lock and someone had to go around the car, unlock the front door, climb into the back seat, unlock and open my door before i freed my thumb. the result of my carelessness was a huge thumb splint and a splendidly black and purple, nailless, digit with which i could gross out my friends. the longer lasting result of the injury was that the nail very frequently ended up with deformities, deep grooves and an uneven surface. this is one cause of beau’s lines- trauma to the cuticle bed. that explains the left nail. the right nail? i had no explanation and i have no idea why i didn’t think about it at all before recently. but beau’s lines are also caused by peripheral vascular disease and raynaud’s phenomenon falls into this category. i haven’t figured out why this would only affect two nails or why it’s worse in the summertime (when my circulation is vastly improved), but it seems the most logical culprit. damage to the vessels under the nail… anyway, it’s really just one more thing for me to monitor.

last week i finally made it into a dermatologist to get my bald spot (alopecia) needled up with cortisone injections. the hairless area was slightly larger than 3cm across (which isn’t really that small when it’s on your small head). the PA, mrs. m, gave me a ring of tiny injections and one in the center. the goal is that the steroids will jump start hair growth in that area. while i was in there, i figured i’d inquire about the scars, blisters, scabs, etc. mrs. m asked me if i’d had a biopsy of any of the marks. no. no, i had not. in fact, i hadn’t even thought about it. she asked if i would up for a couple of biopsies. of course i would be! any more information i can gather about what’s happening in my body is important to me. in this case, we’re hoping that the biopsies will be able to determine wether the blisters are a result of a drug interaction or if they’re vasculitis, as suspected by dr. j. i’m supposed to get the results back today. it’s pretty exciting that i’ll finally know what kind of torture i’ve been subjecting myself to.

meanwhile, my partner brought a cold into the house and i’m trying to squash that in its beginning stages. taking immunosuppressants and all the other stuff… creates some uphill battles. it’s okay. i haven’t taken my gloves off in years.

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.