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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