fighting hair and nail.

July 30, 2013

a long time has passed since i discovered that missing patch of hair on the back of my head. in this case of lady baldness, a long time is a couple of months, i think, but maybe it just feels like longer. i did tell you it got bigger, right? well, it did. it got bigger. i started to feel this constant low-level dread every time i saw more than a few hairs lying about. i felt like my hair was thinning everywhere. i was constantly running my hands through it, poking at my scalp and sifting about up there trying to ascertain whether or not i really was losing more hair. now that clumps of hair are not slipping through my fingers and falling to the floor, i can say definitely yes. yes. my hair was thinning.

to make hair woes worse, it would seem my body isn’t processing or synthesizing something right. but what’s new about that? nothing, except that this is the first time i’ve had weak, striated, thin nails and my hair is breaking and splitting like never before. this could be from sjogren’s syndrome, one of my constant autoimmune diseases (some of the others come and go).  i’ve increased my calcium and zinc intake but neither seem to have impacted my nail beds.  i’m wondering if the nail issue isn’t as closely related to the hair loss as i had assumed. my best guess is that this is a condition called beau’s lines, horizontal indentations that mangle the surface of the nail. only my thumb nails are affected and i don’t feel self-conscious about it but i think if each nail suffered this affliction, i probably would care more. so other than vanity, should i care more? probably. i probably should. all these little issues, the ones that feel insignificant when paired against something like, say, an atonic seizure that leaves me in a heap on the floor, they actually mean something. if i could stay more aware, be a little more mindful of these changes, i would have a much clearer picture of what’s happening in my body.

so, beau’s lines… at some point in my childhood, during the days of manual car locks (somewhere there were probably luxury vehicles with one button that controlled all the locks, but they were nowhere near where i lived), i slammed my left thumb in the car door. my thumb was lodged in the lock and someone had to go around the car, unlock the front door, climb into the back seat, unlock and open my door before i freed my thumb. the result of my carelessness was a huge thumb splint and a splendidly black and purple, nailless, digit with which i could gross out my friends. the longer lasting result of the injury was that the nail very frequently ended up with deformities, deep grooves and an uneven surface. this is one cause of beau’s lines- trauma to the cuticle bed. that explains the left nail. the right nail? i had no explanation and i have no idea why i didn’t think about it at all before recently. but beau’s lines are also caused by peripheral vascular disease and raynaud’s phenomenon falls into this category. i haven’t figured out why this would only affect two nails or why it’s worse in the summertime (when my circulation is vastly improved), but it seems the most logical culprit. damage to the vessels under the nail… anyway, it’s really just one more thing for me to monitor.

last week i finally made it into a dermatologist to get my bald spot (alopecia) needled up with cortisone injections. the hairless area was slightly larger than 3cm across (which isn’t really that small when it’s on your small head). the PA, mrs. m, gave me a ring of tiny injections and one in the center. the goal is that the steroids will jump start hair growth in that area. while i was in there, i figured i’d inquire about the scars, blisters, scabs, etc. mrs. m asked me if i’d had a biopsy of any of the marks. no. no, i had not. in fact, i hadn’t even thought about it. she asked if i would up for a couple of biopsies. of course i would be! any more information i can gather about what’s happening in my body is important to me. in this case, we’re hoping that the biopsies will be able to determine wether the blisters are a result of a drug interaction or if they’re vasculitis, as suspected by dr. j. i’m supposed to get the results back today. it’s pretty exciting that i’ll finally know what kind of torture i’ve been subjecting myself to.

meanwhile, my partner brought a cold into the house and i’m trying to squash that in its beginning stages. taking immunosuppressants and all the other stuff… creates some uphill battles. it’s okay. i haven’t taken my gloves off in years.



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.


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.

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.

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. ❤

house of cards.

April 1, 2012

when i was in junior high, or maybe just a freshman in high school, i ended up with a stack of details magazine back issues. this, you should know, was back when details was edgy and cool, at least for a kid my age. i used to pour over every word in those magazines, saying that someday i was going to take the green tortoise bus across country (upon looking at their website, they are definitely not providing the same kind of tours). i had dreams of this bus being like ken kesey‘s bus, further. i thought i’d be smoking pot, dropping hallucinogens and bathing naked in hot springs with strangers. i thought i’d be my own merry prankster. okay, so hippie kid dreams aside, there was an article in one of the magazines that listed the top ten worst diseases to die from. the only one i remember from that list was scleroderma, a hardening of the skin that could cause paralysis and organ failure. this list was sensationalistic, but in 1999 when i was diagnosed with scleroderma as a component of my mixed connective tissue disease, i instantly remembered that page out of details.

last night, while feeling awful and laying on the couch watching back-to-back episodes of one of those one season crime dramas, i started to pay a bit of attention to the rough, patchy areas on my fingers. during the winter, i assumed that my reynaud’s, which expands and contracts the vessels in my fingers, was to blame for the painful splits down the center of my finger pads. my right hand started to look like a piece of shattered glass. i figured that as the temperatures warmed and my reynaud’s became less pronounced, that my hands would heal. i was wrong. instead of healing up, the skin on my fingers began to harden. then i remembered i have scleroderma. scleroderma is an autoimmune disease in which the body produces excess collagen, causing areas of the skin and potentially internal organs, to thicken, harden and render the site of attack, unmovable. i haven’t had any scleroderma like symptoms in a while and in my file it’s noted that i may have CREST syndrome, a subtype of scleroderma that can affect the skin on arms, legs, hands, feet and face and sometimes have organ involvement including digestive issues, and heart and lung problems. there are five primary components of this type of scleroderma and i’m currently showing three of these: reynaud’s, skin hardening and calcinosis in my fingers.

enter the panic. what if my skin stays like this permanently? what if it gets worse? what if it starts to look like these horrible images on google? what if i lose my mobility in my hands? but the real question, the one i started to ask once i stopped looking at horrific pictures of the worst cases of scleroderma was, how do i get treatment for this while i’m undergoing treatment for my lyme and coinfections? my rheumatologists don’t understand anything about this iv antibiotic protocol. one of them doesn’t really believe in chronic lyme, though he’s curious to see if these treatments work for me. i’m hoping that once i get well, i’m able to be the case study that changes his opinion. i’ve written a letter to dr. j’s staff, asking how to proceed and i’ll give my rheumatologist in iowa a call tomorrow, but i don’t know what i’m going to be able to do about it. slather my hands with shea butter and vitamin e oil? that seems my only current choice of action.

being chronically ill, infected with a bunch of tick-borne diseases and having a host of autoimmune diseases, isn’t a path i recommend going down. there’s a lot of branches, debris, and beasts along the road. all i’ve done, is uncovered another roadblock that i have to find a way to push through. where’s that damn bus when you need it? right about now, i could sure use something that changes my perceptions of reality.

my writing life.

February 21, 2012

there’s a header that says “why am i writing this?” and if you click it, it gives some information about, well, why i’m writing this blog. as time goes on, and as i go deeper down the lyme disease rabbit hole, i have new reasons for writing and i’ve realized different purposes that this blog serves. some of that service is for me, some for friends, and some for people i’ve never met. i want to tell you how i came to want to share this information with anyone who wants to read it.

when i was a kid, i wrote constantly. i had sanrio diaries with locks. i had special pencils whose only purpose was to put words down on the pages of a book i hid in the top drawer of my dresser (yes, not a clever hiding place). in the fourth grade, i filled a spiral notebook with poems and gave it to mr. h, my favorite teacher. in the margins, he drew wonderful illustrations and when he tried to give it back to me, i told him it was a gift. i wanted him to keep it. fast forward 20 years; my mom runs into mr. h in a grocery store and he tells her that he still has it and that it was one of the most special things he ever received.

as a teenager, my journals and i were inseparable. also, there was always a minolta srt202 in tow. i grew to have a favorite type of blank book (which i bought and probably sometimes stole from barnes and noble) and a favorite pen. this pen, i would later figure out, was neither waterproof or archival, a sad discovery. my friends and family expected me, at any given moment, to disappear to scribble something down. i photographed my teenage delinquencies and wrote about the heartbreak of unrequited love at 14. it was in high school that i started to wax poetic (no, really. all my prose was like dense poetry) about how my experiences were not unique and if i was feeling it, someone else, somewhere else had too. this philosophy developed into what i felt was a call of duty- to expose my innermost self in a written and public arena. i had a column in the high school paper and i loved to be at the center of moral controversy. my column provoked two kinds of mail- threatening letters and the oh-my-god-i-am-not-the-only-one mail. both stoked my fires. i kept writing. i kept revealing. but then i graduated high school and found myself sick and floundering in an expensive private college. barely able to keep my head above water, i stopped trying to stir every pot i saw.

in my early 20’s, i got into a very specific niche of performance poetry. i created a chapbook called “for love” (and i think i used it for one of my senior theses. oh yeah, i later reenrolled in a university). my photographs and art work were inexpertly cut and pasted between poems about the internment of japanese americans and meticulously crafted pieces expressing my anger over things like misappropriation and institutionalized racism and sexism. on the back cover, under a black and white self-portrait, it read:

i write about my experiences… these stories are never easy to tell… the complexity and depth of the silence surrounding us all are immense, and at times feel impenetrable. it is through honest contemplation of my life, that i have come to realize how difficult it is to talk about the hardship, sorrows and trials we have undergone… i write for unnumbered reasons, in part to bridge a void i once felt- to speak from a place that isn’t about shame or regret, but instead is from, and about, living and love.

once again, i thought i was pushing the envelope. i felt i was creating a narrative of my experience that needed to be heard. i was asked to be the third member of an already successful spoken word group. for the first time, i got paid to write and perform. i loved it. since then, my incredibly talented compadres have published books, collections of their poetry, and continued to move forward, sharing their words with the world. their success brings me joy. we’re not close; we hardly talk, but i’m still proud to have been on stage with them.

my writing went underground as my diseases progressed. i wrote about dis/ease and my decaying body. i detailed my depression and mounting insanity. i shared this writing with lovers, but no one else. during my darkest years, i shared it with no one, feeling so isolated that i believed no one in the world could understand what i was going through.

when i came out on the other side of that, i couldn’t write. words had left me. i was stuck writing the banal stories of what had happened in my boring day. i felt like all i could do was journal, and that both saddened and embarrassed me. a few years ago, i started a blog, just verbose entries about things i bought, stuff i did in brooklyn, and things i sewed, made and altered. it wasn’t terrible, but it didn’t have much purpose, save the fact that it got me writing again. i started writing a memoir about my japanese american grandfather. it wasn’t perfectly constructed but it was something. and then, in one of three set experiences i think you have to have to become a real “new yorker,” my apartment was robbed, my g5 computer was stolen, and with it went the memoir. my writing screeched to a halt.

my partner and i left brooklyn for a house in the suburban woods of the hudson valley. now, without three flights of stairs inhibiting my ability to leave my living quarters, my life became an involuntary, inescapable series of doctor’s appointments, physical therapy, talk therapy and complete misery. it was all i could do; i was sick and stuck managing it fulltime. i was in agony, physically, mentally and spiritually. i was fighting to keep my health insurance and most days i could hardly get out of bed, but i did it so that i could make my doctor’s appointments and hopefully keep my insurance. if i had to leave the house for any reason, like to go to the grocery store, i considered that my day. i could not do more than one thing each day, if even that. we got a new couch at christmas and by the end of winter, i had made a permanent dent in my shape.

sometime in the late spring or early summer,  my rheumatologist dismissed the typed list of symptoms i was having as something i should “talk to a psychiatrist about.” i saw a new rheumatologist who had asked me if i had been tested for lyme disease. “yeah, i don’t have lyme,” i said. he asked me if i was sure i had been tested. i thought i had. i disregarded the question. the new rheumatologist pushed on a series of painful spots on my body and diagnosed me with fibromyalgia, an incurable disease that disproportionately affects more women than men. i was so grateful that he had listened to me and looked for an answer that i wrote him a thank-you card. it’s still pinned in my file. that question of lyme disease stuck in my mind. lying in my couch dent one evening, i watched under our skin, the documentary about lyme, and the question came flying back. had i really had a test for lyme? if i had, it was in 1999. i’d had tick bites since then. i could have been infected after being tested. i remembered my doctors at the mayo clinic saying “this is not lyme,” and i believed them. i poured over my records to see if i could find a test for lyme. i couldn’t find one. i called my rheumatologist and scheduled an appointment.

“i went through my records and i couldn’t find a test for lyme disease. can you give me a requisition for a western blot test?” i know, this isn’t the first time i’ve written about this in this blog. i apologize for the repetition, on the off chance that you’ve read this before. the test came back with one band marked reactive, 41 kd igg. this marker indicates the presence of spirochetes and is the most common reactive band for lyme disease, but can also indicate syphilis or periodontal disease. i called my doctor’s office back to schedule a visit to talk about my lyme disease, which i was certain i had. the secretary thought i was crazy for interpreting my own lab results and determining this single reactive marker meant i had lyme. in spite of her protests, i scheduled an appointment. then i started this blog.

i write here because i have to.

i spent half of my life undiagnosed, sick and miserable. over the years and years of being sick, i blamed myself for so much of what was wrong. the medications prescribed to treat my autoimmune diseases never really worked and so i was constantly switching meds. when the doctors told me that my labs looked better but i still felt awful, i looked to my life for what the problem was. i changed my relationships. i ended my chemical intake. i modified my diet. i moved out of the toxic big city. i switched all my bath and body stuff to expensive natural, chem-free products. i bought ceramic knives. i only ate organic food. i started juicing. i meditated. i practiced yoga when my body allowed it. i gave up gluten, dairy, citrus, soy, nightshades, coffee, and an assortment of other foods i was told might help my health improve. i did everything within my power to get well and it didn’t work. only after i had exhausted all the possibilities that were within my power, did i stop blaming myself. i was doing everything right, so why in the hell was i still sick?

the things i write about are often highly personal. sometimes, when i’m talking to a close friend about what i’m going through, i think, “i can’t share that on my blog.” then i remember my philosophy growing up. i know that if i’m going through this, so is someone else, and maybe they need to know that they are not the only one. i have fears about disclosing the ways lyme disease has affected my mind, created periods of severe (and sometimes mild) mental illness, and caused emotional instability. it’s really hard for me to write publicly about my past substance abuse. and by really hard, i mean, i erased that line three times before deciding i needed to leave it. but i am not ashamed of who i am. i am not ashamed of how i came to be the person i am today. i often find myself telling my friends that we are all products of our own experience and we are all surviving the only way we know how.

i write the stories of my survival.

there is a part of me that is terrified by the idea that you might judge me for this, for any of this. i’m afraid that my partner’s family might read my blog and think i’m a terrible mate for their son. i worry that the information i write about my treatments could someday be used in a case against my doctor. sometimes i am filled with fear… and when i am, eventually, i remember that the only way i can stare down fear and win, is to write it down, tell on it to someone else, take away its power and name it for what it is: fear. without me, fear is absolutely nothing. i’m its fuel and i don’t want to feed it anymore.

i am doing what i have always done. i write. i tell my truths. i divulge private details that cause me some discomfort. embarrassed by my despicable grammar, i keep writing. i survive being embarrassed. i survive my fears. but i will not survive if i am silent… and so i write.

my first date with dr. j

January 14, 2012

who needs privacy anyway? i do, but i haven’t had any since december 20th. in those three+ weeks, i’ve put 4,000 miles on my car (take that carbon footprint!). after weeks of being on the move, i’m finally back in new york, stretched out on my own couch in the chicest pair of silk pajamas, an equally gorgeous silk robe and fuzzy slippers. of course, i’m not alone on the couch… there are two humans and two dogs sharing MY space: talking, barking, moving around, generally taking up room. still, i’m home and that feels great.

after driving 16 hours on monday to get from illinois to new york, my mom and i unloaded and reloaded the car and took our two-person show down to d.c. on tuesday. we stayed the night with my dear friends and their unimaginably adorable 2-month-old baby, none of whom i wanted to leave on wednesday, but i’ve been aching for my own home for a long time now.

wednesday morning we got up shortly after the baby woke, brewed some coffee and headed off to meet with my new lyme doc, dr. j, for my initial consultation. i wanted to be so much more prepared for the appointment than i was, but without any down time, my fuzzy, little mind just wasn’t able to find the headspace i’d hoped for. however, the super friendly staff at dr, j’s clinic, quickly put me at ease. i filled out some paperwork, mostly saying that i understood that my insurance company would not be billed and that i would be responsible for all the charges incurred. i paid the remaining portion of my $750 first appointment charge and was escorted to exam room 1. a sweet technician apologetically took my blood pressure sitting, standing, and lying down. when i tried to lie down on the table, my chest pains flared; she said she was sorry. i must have been more nervous than i really knew because my pulse was racing. she said the doctor would be in to see me in a few minutes and left my mom and i in the exam room.

dr. j came in- all business. we ran through a chronological medical history, which i awkwardly recalled my medical life to the best of my abilities. ten minutes into my fumbling recollections, i finally pulled out the printed timeline i’d labored over a month earlier. he asked questions about events and i struggled to remember the progression of my diagnoses, diseases and treatments. then he moved onto my four-inch thick binder of medical info, poured over lab results and doctor’s impressions, scribbling notes on his own stack of papers. satisfied with this portion of the appointment, he asked me to change into a hospital gown and told me he’d return to perform a physical exam. the exam consisted of your typical reflex tests, chest thumps and breathing with a stethoscope. he pushed on about 30 different places on my body, many of which we’re tender or painful under his touch. for example, he thumped a spot just above the hinge of my jaw. “okay,” he said, “that hurts, but does the pain radiate up or down?”

he asked me to walk toward him, heel-to-toe. i wobbled forward. he asked me to try it again with my eyes closed. i veered left, my feet failing beneath me. after he left the room, i marveled, “i can’t walk with my eyes closed?”

“i guess not,” my mom laughed. there were a few tests i wasn’t able to perform so well, which surprised me. i redressed, sat down next to my mom, and continued her tutorial of her new iphone 4s. she wanted to know how to change her wallpaper. i took a series of self-portraits, increasing in ridiculousness. my favorite, a pose i like to call “rat face,” became her locked screen saver. “get that off of there!” she demanded. “that’s horrible! i don’t want to look at that!” we laughed and laughed. it reminded me of our time sitting in exam rooms at the mayo clinic a decade earlier, waiting for a doctor to reappear in the doorway. it’s been years since my mom has accompanied me to appointments but we spent the bulk of my early twenties exactly like this.

when dr. j returned, we all seemed a bit more relaxed. he complemented my understanding of tick-borne diseases and noted that i seemed to have a good support system. he stated that i had a complex history, with serologic evidence of mixed connective tissue disease (with my most significant markers indicating SLE lupus and sjogren’s overlap, though i do have other autoimmune markers/diseases), as well as recent labs supporting my diagnosis of multiple chronic infectious disease syndrome (MCIDS- aka the presence of multiple tick-borne diseases). he said that if we treat the lyme and co-infections, the autoimmune diseases should improve and that eventually i’ll be able to get off of prednisone (corticosteroids). dr. j said that we would continue to monitor my lab levels (like ana, sm/rnp, and chromatin) to see how they are affected by my treatment. my lymphopenia, a lack of lymphocytes, is just further evidence of my immune compromised state. he observed that the muscles on my right side are notably weak and that the tension in my neck and shoulders is severe and limits my range of motion. the strange sensations and weakness in my muscles speak to how my motor skills have been affected by lyme.

when we started to discuss the treatment plan, i was surprised to find out that i won’t be starting the “real” portion of my treatment for another 8 weeks. in order to prepare my body for the iv antibiotics, i have to really balance my system. as is true with all health matters, restorative sleep is a key ingredient to wellness. at night i’ll be taking trazadone, an antidepressant that has long-lasting sedative effects, in combination with klonopin, a benzodiazepine that works by decreasing abnormal electrical activity in the brain. i’ve taken it in the past to help control seizures. i can continue to take rozerem, a sleep medication that induces an REM state, and i will also be able to stick with melatonin and rescue remedy sleep.

i take a lot of supplements, vitamins and herbs, none of which he saw as an impediment to my treatment, so i can keep taking those. i’ll be increasing my magnesium and methyl b-12. until i start the iv antibiotics, i will continue to take 500 mg of azithromycin and the subsequent nystatin, needed to help prevent fungal infections. he has requested that i add saccharomyces boulardi to the probiotics i’m already taking. antibiotics kill all the bacteria in your gut- good or bad and high doses of probiotics are crucial to maintaining positive gut flora.

he’s starting me on 25 mg of lyrica, to help control neuropathic pain, and 25mg of lomictol, which is generally used to control seizures. i’ll also be taking low doses of ativan, an anti-anxiety medication. all of these medications are supposed to help control pain, essentially calming my frayed, raw nerves and helping to sooth the increased electrical activity in my brain. i’m not gonna lie; i’m scared of taking benzos. i was prescribed high-doses of them to help with seizures and they’re highly addictive. i’ll be on a strict schedule with these, not taking them prn, like i did years ago, but i don’t like being on anything that i’ll go through withdrawal if i stop. but i’m not the expert, dr. j is, and i’m deferring to his judgement on everything. i’m also starting to take deplin, which contains l-methylfolate, nutritional support for the brain.

i’m going to need to have a few MRIs taken and some spec scans to get a clearer picture of what’s happening inside my brain. i’ll also complete a gallbladder study and may need to have my gallbladder removed before we move along. after all the meds have stabilized and the tests have been completed, after my medical picture has been “squared up,” i will hopefully embark on 7 months of iv antibiotic treatments. the treatment plan is intended to be manageable, not nearly as excruciating as i had expected. dr. j says that after a few months of the iv antibiotics i should start to have days where i “see blue skies.” there will be some reactivity, but i’ll hopefully be able to handle it.

now that i’ve written just this portion of my appointment out, i feel frazzled and need to step away from my computer. manageable as this all may be, i’m in it for no less than 2 years- plenty of time for me to update this info. right now, i need to stop thinking about it. 4,000 miles and four doctor’s visits later i just really, really need a break.