the midnight sunburn.

May 22, 2012

my brain feels like a melted popsicle and i can hardly keep my eyes open. i’m more than half-asleep. i apologize in advance for my elemental writing.

treatment cycle number three, day two:

after a much needed, week-long holiday from antibiotics, antimicrobials and malarial drugs, i’m back on the infusion wagon. yesterday morning, knowing i needed to start my iv, i found myself staring wistfully at the road behind me. i can’t even begin to tell you how badly i wanted to not resume my treatments. in spite of my long hesitation, i eventually hooked up my central line to a gravity bag, ate some almond butter and mepron (you need fat to help the mepron to be absorbed, hence the almond butter), downed two fistfuls of pills and got the ball rolling.

this round consists of iv clindamycin, iv azithromycin, an antimalarial drug, mepron, and an antimalarial herb, artemisinin, two day courses of an antimicrobial, oral medication called flagyl, as well as all of the other pills, herbs and potions i take to both support my system and to annihilate the lyme spirochetes, cystic colonies and biofilm that has infiltrated my body. i’ll be doing two cycles of two weeks of treatment with one week off at the end of each time block. this is what’s referred to as pulsed antibiotic therapy, a consistent rotation of heavy hitting medications alternated with “holiday” weeks, or time off from treatment. personally, i really need the week long break i get at the end of each cycle of meds. it takes me anywhere between three to five days to start to feel well enough to make plans, leave the house, and potentially interact with actual human beings. most of my daily run-ins involve french bulldogs who will happily abandon me to chase a rogue ant crawling around the house. during treatment weeks, i infuse on monday, wednesday and friday. on sundays, typically my body has recovered enough to venture out into the world and participate in a life beyond my living room. the pulsed therapy, aside from giving my body and mind short breaks from intense pain and exhaustion, hits the lyme and babesiosis in full force. because the doses of medication are not consistent throughout, it makes it harder for the spirochetes and protozoa to adapt, evolve and become resistent to the medications. on that same hand, it means that my body never levels out, never gets used to one drug and is constantly trying to adjust to the different substances that are introduced into my system. pulsed treatments are incredibly effective and also difficult to endure.

last night around 10pm, my ears and neck started to itch. this quickly spread into a solid red flush which eventually covered my entire body. on my face and chest it feels like a chemical burn. the rest of my skin feels like i’ve got a moderate sunburn. for someone who has had maybe four sunburns during her life, this is seriously uncomfortable. my face, for the fifth monday in a row is swollen, red and puffy. my medical team is pretty sure that this is a herxheimer reaction, a good indication that my system is getting flooded with toxins, ie: dead lyme spirochetes. naturally, dead bugs are exactly what i’m going for and in the wake of the toxic overload, i’m exhausted. i took a new oral medication called atarax to help ease the itching so i could sleep. that shit knocked me out! it’s 2:30 and i still can’t seem to keep my eyes open. i’ve been using all the detox protocols i know of to help move the toxic burden out of my system as fast as i can, but i think the only option available to me at this particular moment is to drag  myself back to bed. at least i have the world’s cutest cat waiting for me on his pillow (which is right above mine). napping is so much easier when you have somebody else sleeping beside/above you. it’s like getting unspoken permission to rest.

on another note, a really good friend of mine is at a similar stage in her battle against lyme, babesiosis and bartonella (the same lyme co-infections that i have). i can’t even begin to adequately describe just how much money, time and emotional effort goes into this fight. you would be shocked, truly shocked, if you knew how much money i have spent trying to heal myself and rid myself of these infections. since january, the costs of my office visits and iv medications has just crossed over the $20k mark. this doesn’t include the boxes of supplements, the expensive foods i have to eat to adhere to the strict diet i’ve been prescribed, and the cost of my oral medications. i can’t bring myself to total those up because i know i’m going to feel devastated by the amount of debt we’re accruing working towards my wellness. waging a war on lyme disease is unimaginably costly and very few people can afford to do this on their own. here’s a link to my friend’s fundraising page. if you can donate to help her to get the treatment she needs to make it through this, that would be incredible. every little bit of support means the world to her. if you don’t have the financial ability to contribute, please consider sharing her link/story with your circles and communities.

in spite of what the cdc is telling us, lyme disease is an epidemic. it is the fastest growing vector borne disease in the united states. spreading the word (in whatever form that message manifests) raises awareness. it can infect and affect anyone, anywhere and without treatment, lyme patients can be disabled for life or even die.

for more information on lyme disease and other tick-borne illnesses, contact ilads.org. at the top of my home page, there’s a link called “lyme disease resources” that can provide you with more information and resources regarding tick-borne diseases.

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at the very end of this long post, i’ve embedded some links to video of my reactions to the toxic die-off. i’m a little scared to post them because they’re ugly, hard to watch and really intimate, but they’re there, in case you want to see what this is actually like (for me. everyone’s reactions are different).

had i realized that if i tuck my knees into my chest and pull my t-shirt up over my face creating a tiny tent of privacy, i might have cried sooner. or more often. or something. as it is, having the new ability to produce tears, i now find myself on the verge of brief weeping with fair frequency. today it was because my partner was being a turd about taking time off work to vacation on one of my drug holidays where we have to be in washington dc on a monday and montreal on that friday. it seemed like the smart thing to just make that a vacation week. then i looked at some real estate in a nearby town that i would have preferred to live in. for the same price we paid for our house, we could have purchased something more incredible with 5+ acres. after that, i checked the listing price (estimate) for our house and it was seriously low. it was also wrong, but it was low. and then i started to cry. and really, what is the crying about (because it sure as hell isn’t about real estate prices and the housing market)? my brain is so flooded with dead spirochetes and lyme cyst colonies that it’s not functioning properly. every fifth sentence or so, i cannot remember the word i want to say. i lose my train of thought like a four-year-old with add. i listen intently to someone and then have no idea what they just said or how to respond. i can’t follow driving directions. i don’t know what day it is. i feel like my mind, my sweet and beloved mind, is decaying rapidly, like a piece of fruit left out in the summer sun. i know that’s not a good simile, but my mind doesn’t know how to recall an actual… what in the hell are those things called?

argh.

okay. you don’t know this, but i took an hour break from my computer and played some lighthearted hip-pop on the back porch and tried to teach my partner a few dance moves. he’s not strobing yet, but maybe someday… and in any case, i’m not crying anymore, so that’s good.

for the first time in a long time, the weekends actually mean something to me. even when i’ve been healthier, i’ve never been a 9-5er. i’m pretty sure my soul would wither and die were i to try to suit up and sit in a cubicle for 8 hours a day. in fact, i think my soul would start to shrink on the commute there, maybe even when i handed over my resume. because of my unreliable body and my rigorous vacation schedule, i’ve always held jobs that allowed me the utmost flexibility. i’m a stellar performance poet, barrista, waitress, and sandwich delivery driver (or maybe not. i did total my car one day at work about 7 years ago. i had to call the person to whom i was delivering the sandwich and tell them that if they still wanted it, they needed to walk two blocks east and get it from me because my car was on a curb, crushed by a minivan. they decided to order pizza instead). i’ve worked odd days of the week, often on the weekends because in the service industry, those are the bigger money days, and as such, saturday and sunday have just been days like any other. now that i have a demanding medicating schedule monday through friday, the weekends are the only days that i have the slightest hope of feeling like a real human being. i don’t really have a point here, i’m just typing. there might have been a point i was planning on getting to but if we revisit the end of the first paragraph, we’ll see where i’ve stated that my brain is not working.

i saw dr. j yesterday. even though i took terrible notes (butterfly mind), it was a good appointment. i showed him videos of my reactions to the last treatment cycle and he quickly identified what was going on and explained why it was happening. for example, on the days where i was unable to stop moving my body, i was suffering from akathisia, a condition often referred to as restless leg syndrome. the days where my legs felt like sausages that might split if i took another step had another name, one which i cannot remember. on three occasions this past month, that particular sensation led to all my muscles giving out and my body dropping to the ground like a ragdoll. these were atonic seizures. the exorcist like vomiting was my body’s reaction to a drug called flagyl. the flagyl is used to kill cyst colonies in the brain and acts like a garbage shoot, dumping all the dead spirochetes into my body and flooding my system with toxins. i only take this medication on the last two days of each treatment week and the intense reaction i had indicates that it’s doing exactly what it’s supposed to be doing. i’ve had a lot of itching and some (hardly visible) white bumps under the skin on my knuckles and hands. dr. j explained that this is also bacterial die-off and has prescribed a medication that i can take at night that should relieve the relentless itching, making it so that i don’t wake up every few hours to slather hydrocortisone on my knees, biceps and hands.

he said that this was a truly rough cycle and that though that can happen, it’s not typical. the rash that covered my whole body was an allergic reaction to septra-ds, a sulfa based medication. the combination of the intended treatment and the allergic reaction made this last phase pretty unbearable. during the last week of this cycle, i stopped taking the septra. subsequently, i slept all week. dr. j said that hypersomnolence occurs in about 85% of patients and that this is really where he’d like me to be. better to be sleeping all the time than awake and completely miserable. i guess i can agree, but it’s psychologically pretty challenging to sleep through life. i’ve hardly had the wherewithal to give myself my morning and evening infusions, let alone eat and take my oral doses. i struggle to let the dogs out to go to the bathroom, to make myself some juice or hassle through bathing. the idea of moving from couch to bed for the next six months is disheartening. i know this is short-sighted, but…

sometimes i doubt that i actually have lyme disease. it’s this complicated mental paradox because though i exhibit tons of late-stage lyme symptoms, the years of being told that everything is just in my crazy head or is due to my autoimmune diseases or that there’s no such thing as chronic lyme, make it hard to believe in this diagnosis 100% of the time. i have a controversial disease that only a portion of the world believes exists. that means that i have to have faith in something that i can’t prove with serology (blood work) and having faith… well, that’s another struggle. i was raised unitarian and thus was raised to question things like the existence of god. i don’t exactly know how to keep faith in something that i can’t see, can’t prove through scientific methods and don’t have intangible evidence of. i believe in chronic lyme disease, but sometimes i doubt that i have it. when i meet with dr. j, i leave his office completely sure that i have this disease. it’s a sad reassurance, but unlike my autoimmune diseases, there’s a distinct possibility that i can cure this disease. and i take strange solace in the fact that when dr. j watched the videos of my herxing, he affirmed the severity of my lyme. it really is everywhere in my body. it is in my head, physically not mythologically. for some reason, this comforts me a bit.

i think i’m going to post some of the videos of my herxes. they’re some of the most unflattering footage of me ever taken, but i feel like it’s important for people to see what this can look like. even though i struggle with the weight of years of medical professionals condemning my very real physical symptoms to the realm of psychosomatic manifestations, i don’t think other people should have to carry that burden too. so maybe if you see what this looks like for me, you’ll feel a little better about what you’re going through. you’re not alone. you’re really not, and even if i haven’t replied to your comments or emails (which i want to and i really hope to this week), i’m right here with you. i swear.

here is a herx video link and here’s a different one. i hope i don’t regret this…

poorly composed.

May 15, 2012

i’m on day two of my drug regiment holiday.

thank god.

with an unanticipated week off somewhere in the middle to wait out a full body rash, what was supposed to be a four-week treatment cycle turned into five weeks. i’ll be heading to washington, dc on thursday to meet with dr. j. to find out what’s in store for the upcoming month. please, oh please, let it be a gentler beating than this last one. it has been, perhaps, the longest, most excruciating month i’ve endured in years. this microscopic battle raging inside me has drained me of what little energy i had. i’m struggling to pick up the pieces and move forward. i haven’t been writing because i haven’t really been awake. i don’t think i’ve ever slept as much as i have in the last few weeks. i’ve been a zombie, moving between my bed and the couch, occasionally bringing a cat or a dog with me for napping company. while i kept contemplating writing, there just wasn’t much to report. i lack the mental acuity to write anything even remotely intriguing, but i’m giving this post a go anyway.

on my last day of antibiotics in this babesia/lyme slaughtering period, i couldn’t even take my last two sets of oral medications because i was rumpled up on the living room floor with a wastebasket, violently throwing up and praying the room would stop spinning. i spent the hours between 10pm and 4am, hooked up to a bag of lactated ringer’s, in child’s pose on the bathroom floor waiting for my stomach to stop lurching. as many of us asians are, i am allergic to alcohol. and in spite of the fact that alcohol inspires the same kind of sickness i experienced a few days ago, i devoted a decent portion of my 20’s to drinking. i have never been so grateful that i gave up the bottle as i was when i was splayed out on the bathroom floor. additionally, i wished that i had the foresight to clean the bathroom much more recently than i had. clearly, sobriety has raised my standards.

i’m still feeling really delicate, raw and nauseated. i can hardly look at a vegetable without my stomach turning. i’ve subsisted off of vegetable juices, blueprint cleanse juices and fruit. this doesn’t feel like a sustainable diet, but it’s all i can manage right now. the last few days have been emotionally exhausting. it’s hard to imagine going through five, six, seven, however many more months of this. i’ve been on the verge of tears more than a couple of times, trying to talk myself down off of a breakdown ledge. i feel isolated and lonely, but am generally not conscious enough for company, so these feelings confuse me. why bother being bothered by things completely out of my control? i’m trying to keep my thoughts focused on the positive aspects of all of this. i’m trying to really believe that this is a means to an end, one i’ve been dreaming of for a long, long time. even so, i feel like a broken record. this is hard. this is hard. this is hard.

on sunday, i was lucky enough to have one beautiful day of reprieve. for the first time in weeks, i left the house to do something other than get groceries, prescriptions or blood work. my partner and i met a friend at the farmer’s market and had a sweet picnic, our two french bulldogs panting heavily in the 80 degree sun. afterwards, it felt like a miracle that i still had energy. we decided to use the steam and go shopping. sounds trivial, i know, but i’ve got a few weddings to go to this summer (if my body will allow me to show up) and my chest catheter isn’t exactly the most elegant accessory. i’ve been perusing the internet, trying to find a suitable dress to wear. looking at tiny pictures of tall, skinny models in expensive clothes, i didn’t feel like my money was going to be well spent online, so we went on the hunt. five minutes before all the stores closed, i found the perfect dress, an affordable balenciaga, another miracle of sorts. what can i say? though i think i have most of my priorities in check, my ego is fragile and i’m still vain. i may not feel great during all these summer nuptials, but at least i’ll look good. that is, if my body doesn’t peel from eyelid to thigh like it did last week. one can always dream…

suddenly, seymour.

May 6, 2012

my phlebotomist took one look at me and said, “oh no. you look like a tomato!”

“i do look like a tomato,” i said and we started to laugh. then we talked a little bit about my treatments. my eyes were puffy and bruised and my itchy face looked like a red raccoon mask and “this,” i told her, “means that the treatments are working. if i didn’t feel so bad, it would mean that the drugs weren’t doing their job.”

“good,” she said, “i’m glad you look like a tomato.” we laughed again.

“you look good,” one of my pharmacists said to me last week at the drive through window. “you’re feeling better?” there was a rise in intonation that indicated that this was a question, but it wasn’t. it was a statement. i involuntarily smiled and accepted her words with a “thank you” and “no, not feeling better yet.” i responded to it as the compliment and well wishing it was intended to be, but it didn’t feel like either. i mean, this is my pharmacist. she knows just how many prescriptions i pick up each week. she knows there’s a pipe popping out of my chest that i mainline drugs into. this lady knows that i’m not well. i can’t remember where else i went that day, but three more people told me that i “looked good.” i actually must have been feeling somewhat okay or i wouldn’t have encountered more people than the pharmacist and the lady who runs the farm stand by my house. usually, when i’m feeling particularly bad, i make efforts to look really good. my sunday best might come out to go to the grocery store. it’s possible that i’ve put on fake eyelashes just to go to a meeting (i did lose most of my eyelashes for a few months there, so the whole single false lash thing became commonplace for me). i’ve been doing this for years, teetering on unsteady heels, smiling, laughing, making conversation without missing a beat and feeling like at any moment my guts might drop to the floor, spilling the well kept secrets of my sickness and pain into an unavoidable and disgusting heap at my feet.

i have personalized these casual comments about how i look healthy or like i’m feeling great. i’ve twisted them to mean any number of things, a loaded combination that leaves me feeling like i’m the only one who sees the elephant in my room. there’s something confusing about having people say “you don’t look sick” when you’re trying not to throw up, trying to just stand still, trying to remember to breathe even though you feel like you’re suffocating. like any surviving animal, i want to hide the vulnerabilities of being sick. it’s in my nature to cover-up weakness, to act as if when i feel anything but.

when i hear, “you look great!” i do one of two things. i either politely say “thank you,” or i say something like, “thanks. i’m glad that i don’t look as bad as i’m feeling.” i say it with a laughing tone in my voice so it doesn’t enter in like a giant, uncomfortable storm cloud that’s about to dump on our polite conversation. i am really, really grateful that i don’t look how i feel, but i also feel like it’s easier for us to tell chronically ill people that they don’t look sick because it lets us off the hook in some way. and when it comes to lyme disease, almost any infected person has stories like mine. when you don’t look ill, there’s a big element of surprise when people find out just how much suffering you’re enduring . often, a part of the response is to sweep our discomfort about someone else’s illness under the rug because we just don’t know what to say.

don’t get me wrong, there are days that my hands can’t unclench and my claws are a dead giveaway that i have serious medical conditions. sometimes i can’t walk without a dragging limp. sometimes i can’t walk at all. but chances are, you’re not going to see me on those days and so when you do see me, i’m all smiles, make-up and carefully selected clothes. i’ve perfected the facade. i’ve had 14 years to figure out my costume and i wear that shit well. i want you to think i’m strong. i want you to believe that i’m the person i look like on the outside, but somewhere, deep beneath the surface, i also really want you to see me- someone who has battled her own body for so long that she no longer knows what it means to be healthy.

as i’m going through these treatments, my partner and i are making dream plans for the vacation we’ll take when i’m well. we’re talking machu picchu, visiting my family in japan, riding camels into petra. we’re drafting dreams that i’m terrified to let my heart hold because i don’t know what it’s like to trust that my feet will stay beneath my shoulders. i don’t know how to plan on dancing at a wedding because i’m not sure that i’ll have the energy to pull the covers back and get out of bed that day. and this isn’t new for me. this doubt has been with me since before my diagnosis of a mixed connective tissue disease in 1999. i’ve carried these fears with me for so long that i don’t know how to let them go. i don’t know how to hear “you look great,” and have it mean exactly what it’s supposed to. “you look like a tomato,” on the other hand, i completely understand.

i feel like i’m moving at a snail’s pace and the rest of the world, the days, the nights, they’re all spinning so quickly past me. i don’t do much right now. i haven’t been writing or working on art projects. my brushes and blank canvas are sitting in the same room with me, but i haven’t picked them up in a week. i’m not cooking elaborate meals. i’m having trouble finding an appetite with which to eat anything. i haven’t mended the stack of beautiful silk garments i’ve pinned and readied to be altered. my closets have been emptied of most of the winter wools, but have yet to be replaced by spring and summer clothes. unpacking gorgeous summer dresses and gold-riveted, four-inch, dolce & gabanna stilettos that i probably won’t be able to wear this season is, admittedly, a bit sad. it’s like i’ve set up this life inside a life. i provided myself with options, things i thought i’d be doing while i was hooked up to a gravity bag and an iv pole, but i’m so tired that i can’t find the creativity to pull off the vision. instead of drawing, i take photos of the dogs. with puffy eyes that don’t make tears or focus well, i watch tv instead of reading. but mostly, i sleep. sometimes when i’m awake, it doesn’t feel like there’s much of a difference between the two states. at least when i sleep, my dreams are vivid, full, exciting and don’t take place within the walls of my house.

now that sounds depressed, doesn’t it? it’s not, not really anyway. today was supposed to be the last day of antibiotics and antimalarials in this four-week cycle, but since my treatment was put on hold last week, after my last two infusions tonight, i’ll still have one more week of treatment before i get to take a break and see the good doctor. this week felt almost exactly like the first one of this cycle. after having that unintentional week off due to a possible stevens-johnson syndrome rash (which can be fatal/is really dangerous/etc), i started back up where i left off and the herxing was even more brutal than it had been the week before. i had the cramping, constant motion, searing, stabbing pains, swelling, nausea, new rashes and a fever of 102 from which i felt i would never actually get warm. i spent about 24-hours wrapped in a heating blanket crying out like a wounded animal. day two led to the same sore muscles, raw skin, and exhaustion that i’d had before. until today, i literally felt like a few layers of skin had been peeled off of me. my partner, not having been a witness to this acute of a “healing crisis,” before, kept trying to get me to email my medical team. he was most insistent that i tell them about the fever, which at one point was about 103. after some puppy dog eyes on his part, i reluctantly released this detail. alas, it was the mistake that i thought it would be.

even though the fever didn’t last longer than 24-hours, and in spite of the fact that i didn’t have any other indications that there could be an infection in my line or sepsis, i was instructed to immediately have blood culture drawn directly from my central line, as well as from a peripheral vein and get a urine sample. getting those samples in new york? not so easy. in order to have any blood drawn from my line, i need to have a registered nurse. that’s true of anywhere in the country. but somehow, around here, an rn is not good enough. the only way that i can have a culture taken of my line is to go to an emergency room, register as a patient, see a doctor, create a chart, go through my medical history and then have them request the lab to do a line draw. needless to say, i pushed back and said i wasn’t going to do it. but you know what happens when you say “no” to testing when there’s a deadly condition on the line? you start to worry. what if you’re wrong? you don’t have a medical degree. you’re not trained in any of this. what if you say “no,” and you die? don’t get me wrong, i didn’t decline the draw because i didn’t want it and i didn’t make this decision completely uniformed. i did my research. i checked my blood pressure. i took my temperatures. i monitored my respiration.  i called it in with my sweet, butch nurse. we discussed why they might suspect a line infection and why i didn’t think i had one. i wrote my medical team and told them all the things i’ve been keeping track of. i promised to go to an er if anything changed, but that at this point, i’d had a normal grade fever for two days, no signs of heat, swelling or streaking around the insertion site and that i didn’t think it was necessary. did i mention the fact that a trip like that to an er will run me about $1000? so there’s that part too.

i did have to stop taking the septra as it’s possible that i’m having an allergic reaction to it. maybe the septra (oral antibiotic and antimicrobial) is to blame for my red, swollen lips and bruised eyelids. and the exhaustion? there are some serious battles going on in here. now the ticking, twitching and seizing that seems to go on forever only when i have to sit still in public? i don’t have a good read on that yet. i guess you won’t catch me sitting with a book in the library anytime soon. in this moment, all i really want is for next week to spin by unremarkably, without even the slightest hint of a potentially fatal complication. is that too much to ask for?