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

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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.

soldier on.

April 18, 2012

i’m in the middle of infusion number one of the four i’ll do today. i still haven’t recovered from my first run on monday, though i slept my way through most of tuesday. i’m really hoping that my reaction (herxing) the day before last will be the worst of it. fingers crossed. i don’t know how well i’ll handle another day and night of convulsing, rolling around on the ground, moving constantly and generally feeling like my body is possessed by a demon, of which i have no control over.

the fallout from two days ago convulsion party is that every muscle in my body is sore. it feels like i’ve fallen victim to a meat tenderizer. my eyes were bloodshot until this morning, i think because i was holding my breath to get through the stabbing pains and i probably strained something behind my eyes. today my actual eyeball is less red, but my orbital cavities are raw and red. my eyelids are heavy and itchy. my ears pop and hurt. i can’t stay in one position for very long. i have almost completely lost my apetite. my chin seems to have melted into an array of swollen lymph nodes. i’m having trouble walking and standing because it feels like my legs might split down the center like a hotdog. the toxic die-off affects the extremities because the blood flow is weaker, so my arms hurt too. also, i’m unreasonably crabby, impatient and angry, which i hadn’t really noticed until i was talking to a friend about her symptoms. this morning when i became instantly annoyed at my mother who hadn’t heard what i said, i remembered what my friend had said. maybe my disproportional reactions are caused by the die-off of lyme and babesia in my brain. it’s hard to know what’s a symptom and what’s not. it seems like anything that feels off gets thrown into the “that’s from lyme and co-infections!” category. my car started acting up today and i’m going to blame that on lyme disease too.

this is hard, really, really hard. even though it’s what i expected, actually experiencing it is excruciating. again, this isn’t written to simply complain about feeling like i’ve been run over by a truck, but to give shape to my process and progress. maybe i haven’t looked hard enough, but i haven’t found any blogs that were entirely engaging about going through treatment for lyme and co-infections. i have found great blogs about chronic illness that i can identify with but right now, that’s not the angle of support that i need. and the most lyme popular blogs? i found those to be utterly unhelpful. obviously, people can relate to those, but i didn’t. at all.

dear day three of the treatment schedule, please be gentler on me. please?

jumping through hoops.

January 17, 2012

i had fasting blood work drawn this morning, but because there were so many tests ordered, we were only able to take 18 vials of blood. i’ll need to return in the next day or two to have the remaining work done, but first i need to contact my doctor and see if there are other codes available that they can give me to bill my health insurance. if not, i’ll have to pay for 4 of the 48 tests ordered. i’d rather not have to do that.

when i walked in the door, my tiny hands shoved into enormous gloves, the lab tech said “heated gloves? those are great!” i agreed with her and said that i wished they made some smaller ones. “yeah, they’re all pretty bulky,” she said. “you use them for raynaud’s?” i told her that i did. the lab tech was friendly and shared with me that she has raynaud’s, as well as scleroderma and sjogren’s. i find that this happens a lot when i’m at doctor’s offices or labs; technicians and doctors, receptionists and other patients, all seem to spill their medical stories to me. sometimes this information is really intimate, detailing the sad downward spiral of a family member who passed away from an autoimmune illness because they didn’t have insurance, or confiding in me that their teenage daughter is waiting for a liver transplant because of her autoimmune diseases. it’s like being in a very temporary confessional booth, where someone’s fears, sadnesses, triumphs, and anger can bubble to the surface for just a moment or two. i think they look at my medical charts, and add that information to this person (me) who is being kind, looking them in the eyes, asking questions about how their day is, and the result is that for that sliver of time, they trust me. i think we all really need a sounding board for this shit and for me, it’s this forum- a somewhat anonymous blog (though according to the site data, about 2/3 of the people reading this are people i know.), where i tell the truths of what i’m going through. thank you, internets, for allowing me this outlet, bad grammar and all. i need it.

after lunch with a friend, i came back home and started trying to schedule a brain MRI, an abdominal ultrasound, a brain SPECT scan, and a HIDA scan. my doctor recommended i get these done at the westchester medical center, so i called the general number and sat on hold for 40 minutes. while waiting, i used the house phone to call the MRI and imaging department. i got ahold of a real human being and hung up with other line, the sporadic, static-riddled, elevator music one. this began the 2 1/2 hour run around. i called 9 different departments before being able to schedule just two of the tests. i then called nuclear medicine to try to schedule the remaining procedures, but after another lengthy wait, i got an answering machine and left a message. put really simply, these tests are to determine what’s actually happening in my brain and to evaluate my gallbladder so that my doctor can decide whether or not i need to have it removed. good times.

i’ve got to get a move on to fill out this paperwork to keep my prescription benefits in 2012. i don’t even want to think about what would happen if that doesn’t get approved. speaking of prescription approval- i cannot get viagra covered by my insurance. without insurance, a one month supply costs over $600. if i were a dude who wanted an erection, i’d be able to waltz away from walgreens with my little blue pills and go get my groove on. however, i’m just a girl whose hands and feet are in constant danger of becoming gangrenous, who needs a medication that will increase blood flow to my extremely important fingers, and that, my friends, is apparently less important than getting boners. can i get a patronizing, synchronized slow clap for yet another pharmaceutical company failure?