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.

the tides have changed.

October 20, 2012

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

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

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

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

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

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

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

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

the news from your bed.

October 15, 2012

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

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

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

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

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

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

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

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

all by myself.

August 25, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

easy does it.

July 10, 2012

After finishing a citizenship test on christian science monitor (i got an A-. high school me would be furious with that mark, but i’d still be a citizen), i contemplated watching keeping up with kardashians, a show that grosses me out and leaves me feeling like there’s even more wrong with the world than i already knew. i watch it anyway, hate enjoying it the whole time. usually, i do something else while it’s on, but enough about my reality tv guilty pleasure. instead, i decided to write because today i think i actually feel good. dr. j was right- after months of dreariness, i’m starting to see blue skies. at this time of year in new york, those skies are typically accompanied by ridiculous humidity and temperatures in the 90’s (not weather i feel like being out in), but i’m sitting on the porch with my dogs and typing this. one dog feels like my conjoined twin, attached at my hip and my elbow. the other dog is lying out in the sun. there isn’t a cloud in the sky.

yesterday marked the start of week two of a six week round. i took the “rescue meds” before starting my morning infusion of cipro. aside from disturbed speech, stuttering and some weakness, i didn’t feel too awful. i’ve started to spread out the three major medications i take on the regular so that my body isn’t as overwhelmed as it has been taking them all at the same time. i took the artemisinin after the infusion and later downed my mepron. i’ve been eating a few giant spoonfuls of almond butter to accompany the mepron because your body needs fat as a binder in order to process the medication. but i don’t eat much fat, so the source often proves to be one of three things: almond butter, blue potato chips, or an avocado. the avocado is the least effective and i don’t usually have the blue potato chips. i didn’t eat enough of the almonds and subsequently, i spent most of the afternoon and early evening nursing a migraine and my tense neck and shoulders, which is really more painful than you’d think. by the time i’m done, i’m afraid i will have ruined my appreciation for almonds.

when my first LMDD prescribed azithromycin and mepron, i took it twice a day for a week, without knowing it should be accompanied by fat. i was miserable. my body ended up twisted into the fetal position and i had the kind of migraine headache where you keep contemplating putting your head in the oven. i stayed in bed with an eye mask on. i whimpered and complained. i stopped taking it. it took about 5 days to shake off the side effects. i tried to take it again but had the same results. i gave up on it. turns out, all i needed was a little food and i could’ve avoided the mepron misery.

back to the blue skies.

so i feel “good,” a relative term for a chronically ill person, and i want to be active, to get out and do something, but i harbor fears that if i push too hard, i’ll make tomorrow into an unbearable day. my heart rate just jumped significantly when i pushed a heavy door open to get outside. in any case, i’m a binge worker. inspired to do something, like clean the house, i’ll race around trying to tackle every filthy thing i see until i can hardly walk and i’m covered in sweat. then i fret about my dressing (the bandage, biopatch and statlock that keep my central line from the dangers of bacteria and bugs). if it gets wet, it becomes a breeding ground for bacteria. every time i work up a sweat, i have to change the dressing. this isn’t cheap. a good dressing kit, which has some sort of sticky, clear bandage to cover the whole shebang, gloves, a mask, a biopatch, some gauze pads, clorhexadine or betadine swabs, steristrips and some other things i don’t use) can run you between $16-22. changing it out everyday or every other, runs up the already astronomically high bill. but that’s part of having this device in your chest and undergoing iv treatments. you open your wallet and watch money fly out of it. the plus side of changing it so often? lots and lots of press-&-seal free showers!

now i want to write about how unfair it is that these treatments are so costly and how only those with access to cash can use this method to get well. i’m not going to, but it’s something that i don’t stop thinking about.

all over my neighborhood i hear hammers and saws, faint music on radios, people yelling across houses about what work needs to happen next. i’m jealous. i wish i had the energy to rip out the carpet in the front room, pry up the tack boards around the walls and order new flooring. i wish i could go out to my driveway and replace the rotting panels of a 300 ft long fence. i want to rewire the can light in the kitchen so that it works for the first time since we moved in. i can’t. not today. not this summer. good days come with a wistful price. i feel well enough to use my body and get out of bed, but i’m not strong enough to take on much more than a few loads of laundry and a jaunt around the house with the vacuum cleaner. but i’ll take that over a kardashian marathon any day.

the last time i ended up in canada, it was accidental. lacking a natural compass or sense of direction (because let’s face it, even if i had a compass and was staring at a sunrise, i may not know i was facing east), i just kept listening to my gps as it rerouted my trip. when i bought her, i named her “the bitch,” mostly because she said “recalculating” every ten seconds. suddenly i was staring at a giant glowing set of letters that read: CANADA. i checked my GPS and learned that to not go through canada, at this point, would add an additional 11 hours, hours that i could not stand. i was so allergic to the sun that i was pulling over ever half-hour to sleep and trying to haul ass at night. no matter what tricks i tried: 100 spf, giant sunday hat, ugly uniqlo jacket with spf built in, air conditioning, windows down- i was shaking my head back and forth and looking for a good place to pull over. this, i realized, was dangerous too, so i napped with one hand on my enormous hat and the other on my karambit (knife). i was let into canada with a smile and my driver’s license. getting out of canada and into michigan? totally different story. all i’ll tell you about that was that i got into a staring contest with a walrus who asked me if i was an idiot. to which i replied, “well, i’m in a foreign country with no passport, so maybe i am.”

yo, if you ain’t been to canada in the last five years, bring a passport, preferably yours.

i just returned from montreal where one of my brother’s oldest friends, a brother to me too (who may or may not have aided in my torment, usually something to do with a kung-fu movie and a new move someone needed to try out on an unsuspecting little sister.) got married. we began the trip on a medication holiday but ended it on the second day of my the fourth cycle- the biofilm attack. the three or four days of wedding activities was challenging, so i slept in monday morning, after the festivities were over. i jimmy-rigged my gravity bag of a new iv antibiotic, ciprofloxacin, to a metal coat hanger that i hung on a screw in the brick wall above the bed. i set a timer for an hour and went back to sleep.  once the alarm went off, i unhooked, got up and sat down with my brother at the table of our rented apartment. “is it freezing in here?” i asked him. he told me it was hot.

we have established a protocol for this type of reaction.

“oh shit!” i said as i ran to my room looking for warm clothes (of which i had none). i packed on some layers and yelled to my partner to get my rescue meds (the ones i take to calm an “episode” down), hopped onto the couch and doubled up a comforter and hid underneath it. with in minutes of realizing i was cold, i was right back into that shaking, chattering reaction, shooting pains careening through my muscles and my brain refusing to communicate with my mouth. with slow, stuttering speech, i tried to assure my brother, who was standing in the kitchen looking worried, that i would be fine in a few hours, not to worry, and to go take care of what he needed to do. reluctantly, he left and for the next three hours, my partner waited on me. most of this reaction was standard fare, except for the involuntary sobbing (“i’m not, not, sa…sad. i d-d-don’t know why, why i’m crying.”) and the pain that felt like an actual knife trying to carve out my left scapula by stabbing underneath it. i cried like a four-year-old having a serious t.t. (temper tantrum). this, somewhat unfortunately was filmed and though i don’t know why i’m making this public, but you can watch it here. there’s also footage of the beginning of the episode, which is mild, short and right here. i guess i wanted to show what can happen in ten minutes. in another ten minutes, all of this could be over and i could feel pretty close to fine. that wasn’t the case with this one, but it does happen.

traveling while in the midst of this is particularly challenging, but it feels like i’ve missed out on so much living that i want to get an early jump on it. with hope in hand and a potential end in view, it’s hard to wait to do things i’ve been wishing i could. so i’m not waiting. sometimes there’s a price to that. sometimes i learn midway. for example, i just hopped into some CAT work boots and carharts, grabbed my gloves and tried to help use the huge chipper we rented. i almost fell down from fatigue pulling weeds while my brother and dad worked on fixing a jam. i did not help chip wood. subsequently, i returned to my pajamas and the couch.

and in the end, u.s. customs searched my car but let me back into the states, where, upon my return, i slept for 32 hours. i got to say, if canada actually believed in lyme disease (yes, they are starting to, but treatments are not covered by healthcare), i’d get hitched to one of my friends (you know who you are! it could be the bear, me, you, the baby, four cats and three dogs. the best and most unconventional family ever) and renew my driver’s license in toronto, eh?

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?

skinny legs and all.

April 5, 2012

i vacuumed today. gold star for me!

on the real, i’m dragging pretty hard.

when i stand for more than a minute, it feels like blood is accumulating in my legs. they start to turn purplish, red and splotchy. it’s very sexy. in fact, when i’m sitting on my shower stool, i get a pretty up close and personal view of my legs. i get to see how grotesque they become when there’s pressure or weight on them. at some point during my last shower (and i can count on my fingers how many times i’ve bathed/showered since i got my central line placed. don’t judge. it’s quite an ordeal), i realized that it was actually quite painful, so i moved all the products from the little marble shelf in the shower and then tried to prop my feet up. ha! how smart of me- a foot stool to accompany my shower stool. shortly after my victory, i realized that i was blasting water out into the bathroom. genius fail.

when i saw my first lyme literate doctor, she revealed to me that she also had lyme and co-infections. she talked about some of the treatments she was doing and discussed some of the fallout that would happen during treatment. she lifted the bottom of one of her pant legs, unveiling a swollen, purple ankle. “when the spirochetes die,” she said, “they pool in the legs and feet.” so there it is, the reason for my plum-colored, skinny legs.

a friend wrote me and asked if i was taking “binders.” i was not. the binders function similarly to chelation, but instead of bonding to heavy metals in the body, they bond to the dead spirochetes. once linked, the body is better able to get rid of them. she gave me all this really useful information on what natural substances bind together with the toxic bugs to help excrete them from your system. i know, excrete was kinda a gross word choice, but my brain refused to find a synonym and i’m too tired to look one up. anyhow, the binders that i just started using are apple pectin, lemon water and organic broken cell wall chlorella, a single cell algae that’s hailed as one of the best supplements you can give your body. here’s a link to a site that lists some of the benefits of chlorella. other things you can try to help ease the herxing (the reaction to the massive bug die-off) are micro silica, beta sitosterol, and a duo of calcium bentonite clay and fiber. i haven’t ingested bentonite clay yet, but i have made a paste of it and put it on my feet, which is supposed to help pull toxins from the body. i’ve used this a lot for bug bites and bee stings (to which i am allergic, the stings, not the clay). there are a lot of things you can do to help your body more effectively detox, but these suggestions came from my friend, h, and i’m grateful for her willingness to share her experience with me.

personally, i believe that this is the only way that most of us can get through this, by sharing our knowledge and experiences with others. i need the benefit of what you’ve learned so that i’m armed with information i need to fight this disease and to find my way to wellness. on that note, i want to send some serious, big love to my friend, s, who just had her picc line placed today. we’ve been on bloodier battlefields. we came away from those stronger, smarter, more loving, more honest, more open and more teachable. i believe that we’re going to get through this one too. you are not alone, buddy. ❤