it’s a saturday and, as such, i have two days without antibiotics, artemisinin and mepron (<–the florescent yellow syrup that makes me want to collapse into a dramatic heap and whine to you about how much i hate it). oh, my beloved weekend reprieve. having come off of a treatment week that was hard, but not excruciating, this weekend won’t look anything like the last one (that marked the close of a whole week off).

last week i partied.

partied, in my case, is a relative term. i’m still a shadow of the person i was, though i’m gradually transforming into the person i always wanted to be. when i say i “partied” it’s hard to tell exactly where last friday and saturday fell on the spectrum. sure, i slept past noon afterwards, but i haven’t stayed out til 3am in over five years. it’s hard to explain, but i felt like i was enjoying myself in a different way than i have been. and, on saturday night, i sang karaoke from the couch of a friend’s weekend house. karaoke! i suck at karaoke which embarrasses me because i sing. to up the ante- this was hardcore, serious karaoke with a projector, high-quality mics, and a mixing board. this karaoke machine can transpose songs to a different key. i wish i would have used that feature… later, once everyone else was half in the bag, my sober ass played ukulele and sang by the pool (yeah, this weekend house is pretty killer). when a drunk, queeny sweetheart in a tiny floral pair of swim trunks said, “you sound like an angel. that’s the best version of hallelujah,” i felt a flicker of the old me start to burn a little brighter.

as i’ve talked to more and more people suffering from chronic lyme and co-infections, i’ve discovered that many of us feel as if we are acting-as-if much of the time. when put into social situations, we remember appropriate responses and we respond accordingly. i’m not saying that every member of the tick-borne illness lyme club, failed to retain their social graces. i can only definitively state that it has happened to me, and it happened so gradually that i didn’t notice it until it had completely interrupted my life. outside of my family and some really close friends, human contact became anxiety provoking and prevented me from basic interactions. i’ve had the best excuse in the world in my pocket: i am sick. i don’t feel well. tell your friends i’m still a feminist, but i won’t be coming to your benefit. these haven’t exactly been cop-outs. indeed i have felt like shit, and coupled with my fears, i couldn’t bring myself to rally and walk out the door.

somehow over the last decade, i’ve come to a place where i’ve had to wing the majority of my quick stops at parties, gallery openings, small couples dinners and sweaty, sapphic dance events. my closest friends and my partner, all say that can’t seem to tell. secretly, i’ve felt disingenuine, but i’ve not seen any other choice. it doesn’t hurt that i’ve always been a pretty decent actor, but then aren’t we all? who would know the kind of pain we’re in as we politely decline the canapes that have circled our way? how many people in a crowded room will notice if one person slips out? a simple goodbye to the host and you’re out of there, hailing a taxi and going back to your hobbit hole. okay, i don’t actually know what you do. this sad scenario is the one i act out. i don’t stick around because i feel like i can’t.

i wonder what this social phobia, this inability to be my genuine self, this emotional lability, is all about. where i was once gregarious, i grew timid and meek. the confidence i had, the ability to perform music and poetry, to emcee events and speak at community hearings, slipped away. i felt i was no longer meant for the public. if i played music for a crowd, i quickly found the back door and ran to my car.

i’ve come to believe that once the infection passed my blood-brain barrier saturating my brain with spirochetes, real damage was done. more specifically, it’s the prefrontal cortex that i think was affected. this is the part of the brain that controls social behavior and personality traits. the gradual changes i experienced could easily have been caused by a growing infestation of borrelia burgdorferi, creating colonies and biofilm, taking over the most precious part of my body. while my family was scared and almost certain that a latent mental illness was slowly surfacing, i felt convinced that these changes weren’t really me. i felt that they were symptoms, that is, until i forgot that i used to be this other person, someone who wasn’t frightened all of the time. i couldn’t remember the girl/woman who always pushed through anything that stood in my way. back then, i had steadfast moral and ethical beliefs for which i fought tooth and nail. so when did i start signing internet petitions, crossing my fingers and hoping that i was still making a difference?

my theory is anecdotal. though it might exist somewhere in the vastness of the interwebs, i don’t have scientific proof to back my claim. all i have are the stories that people write to me, the sadness of lyme riddled friends who wish that they could laugh with their whole heart and body like they used to, and the weight of my own realization that i have been slowly fading away, losing myself, and wistfully wishing that i could be more like i used to be.

i still enjoy life. i love fully. i laugh. i feel empathy and sympathy. i didn’t morph into a sociopath, i just lost some of life’s exquisite light. it’s as if i could see it, but i couldn’t feel it anymore. as my treatment progresses, as i start to have nights where i can read lyrics off of a wall, shout/sing george michael’s faith, roll into my driveway while the neighborhood sleeps and think “that was fun,” i feel a sense of gratitude and relief. i’m climbing out from under my boulder, dipping my toes into the water and slipping my own skin back on. i’m coming back to me and this feels priceless.

this weekend won’t look like the last one and that’s alright. i don’t feel terrible, but i don’t feel great either. thems the breaks. and i am truly thankful for having both experiences because i can see the spectrum expanding. “can you rate your pain on a scale of one to ten?” nope, not anymore. there’s no scale that could measure the joy of starting to feel vivid emotions again. pain pales in the presence of being present. i don’t want to miss out on anymore of my emotional life and it looks like i won’t have to.

 

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keep your head up.

July 25, 2012

crap.

i have about 5 minutes until this iv cipro gets the best of me. i tried to get some self-loving (no, get your mind out of the gutter.) in this morning before i hooked up and infused. i’ve decided that my itunes playlist is my secret stash of guilty pleasures, so i played that and i pranced about the living room, wishing i could dance like no one was watching all the time. i played tug of war with the dogs (apparently you have to win or they’ll assume the role of pack leader, at least in my case. a 24lb french bulldog trying to determine whether or not you can leave the kitchen? not so much.). i sat in the sun with them. i kept the ringer on my phone off and i pretended that the rest of my day was going to be exactly like this, only one of my friends would show up unannounced and we’d crank the music and let it all out. sigh.

get new iv tubing. get gravity bag of the hell maker. get sodium chloride and heparin flushes. get a red cap. grab some alcohol swabs and… begin.

about halfway through the bag, my head let me know the party was over. then the cold set in. what’s the air conditioner at? 80 degrees? oh sure, i should be shivering. i’ve just grabbed my winter lounge wear and suited up. the heating pad is on-call in case i get the shakes today. monday was brutal but usually wednesday, my second dose, isn’t nearly as hard-hitting as that first day back after a holiday. still, my skin is starting to feel like i lost a few layers and what lay beneath the surface was paper.

i can tell that my brain is increasingly affected by the antibiotics, which means i have to cut this off before i make no sense at all.

anyway, i just wanted to write a less serious post. in the time between the last one i put up, i wrote two. one, when i dropped it into word, ended up six pages long. i usually don’t allow myself to sit on these once i’ve written them. i post in spite of wanting to keep my feelings and experiences a secret. this time, i waited and i’m glad. who really wants to read 2200 words of the most intense and sad time in my life, which was unwittingly caused by lyme? the other piece wasn’t as intense, but… it didn’t really need to see the light of day, much like everything i’m writing now. if i can, i’m going to play “one day” by matisyahu on the ukulele. i just learned it ten minutes ago. it’ll be a rough run! i’ve got to go before my hands ball up and i’m a prisoner to the couch.

just so you know, an iv pole makes a terrible dance partner.

p.s.- sorry tupac, i should’ve saved that title for a better piece of writing, especially with that whole ukulele/matisyahu bit.

i don’t know why… might have been interacting with the iv antibiotics. this is a picture of a distal y iv, a feature of some tubing that i don’t need since i’m not infusing more than one thing at a time. it’s just the iv tubing i’ve got right now.

after infusing my morning dose of cipro (an antibiotic), i couldn’t disconnect my iv tube from my catheter cap.

that clear piece at the bottom is the part of the iv tubing that connects to my catheter. it’s called a luer lock. the space in between the two pieces is the male end of the luer, stuck in the female catheter. p.s.- i hate gendering anything, inanimate objects included.

while trying to disconnect the two pieces, i accidentally undid the thumb clamp (that little part that seals the line off) and i hadn’t completely closed the dial on the iv line, which allowed blood into the tube. in the beginning of my treatment i posted about how i panicked the first time my iv tubing filled with blood. since then, i’ve gotten better about watching/timing the bag of fluid (antibiotics or lactated ringer’s solution) so that i clamp off both my port-a-cath and the iv tubing before the bag is completely empty. gravity bags work by being positioned higher than your heart so the liquid can be pushed “downstream” into your vein. when the bag empties, the liquids take over. this is how you can end up with blood flowing out of your body instead of medicine flowing in. if that does happen, you just disconnect the iv tubing and then flush your line with saline and heparin. it’s a good idea to change your catheter cap if you get blood in it.

anyhow, i wasn’t paying attention and this was the result. i’ve had some difficulties pulling the luer out of my catheter before, but i’ve always been able to disconnect it. no such luck today. i was holding onto my cvc line and pulling the iv tube as hard as i could, but it wouldn’t budge. when that didn’t work, i had my dad (who’s visiting to help me out for a couple of weeks) pull on the luer while i held my line. nothing moved. i had an idea of how to handle this, but decided that i should consult an infusion nurse first. my sweet, cross-country nurse talked me through it. she said that typically, she would use two hemostats to pull them apart, but i didn’t think i had them (i later found a few in my first aid box). if you don’t have them, you can use needle nose pliers or you can do what i did.

i put on a mask, washed my hands and removed the catheter cap. then i used alcohol swabs to clean the lumen, making sure i cleaned some of the inside of it too. i screwed a saline flush directly onto my lumen and emptied the flush. then i used another alcohol swab for a second round (you should do this for at least 15 seconds) and then i attached a new catheter cap. then i swabbed the new cap and followed up with saline and heparin.

it was an easy solution, but i don’t ever want to get this stuff wrong. even though my cvc has a cuff under my skin that prevents the line from being pulled from my chest, i still worry about moving it, dislodging it, etc. and if you have a picc line, this is even more of a risk. no matter what kind of delivery system you have for your antibiotics, please be sure to call your doctor or nurse (or amazing friend who is an expert in this stuff) to get directions on how to proceed. please don’t use my info as medical advice: god forbid i’m wrong and something goes south for you. i just want to share my experiences because i’ve found a lot of this to be scary the first time around.

broken promises.

July 11, 2012

ironic wood tick makes a run for the medication sheet.

the summer before last, the spiders and i agreed to a peace treaty. however, one of the conditions of the treaty was that once they cross the threshold and enter into my territory, they will be given a two second trial by shoe. almost exclusively, these cases end in death. in the event that a visitor who loves spiders is present, they may be pardoned, if, and only if, they are able to be wrangled in (by the visitor) and re-homed outside. this particular member of the arachnid family, the kamikaze wood tick (who has eyes and can see, by the way), failed to honor our agreement.

while i was filling out my symptom sheets from last week, a wood tick appeared at the top of the last page. in spite of its obvious sense of irony and perfect comedic timing, i murdered that thing. i’m not proud of how i killed it, but at least i know it’s dead.

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?