in the middle of the night.

February 18, 2013

when i see these numbers on a clock, the sun better be shining or a cloud blocking its rays. it’s 2:29 am. it is too late, too early, too familiar and too uncomfortable. i feel like just the simple act of sitting in front of my computer is a stellar indication that something is not right with me. in this case, i think there’s an unfortunate collision of issues in the works.

1) i am leaving for canada tomorrow (while this shouldn’t be a big deal, i have some concerns in regards to borrowed cars and a shit-ton of medications, some of which are controlled substances, all of which are currently prescribed to me. you never know. with a customs agent in a horrible mood, any kind of border-crossing attempt can be easily thwarted). travel is always hard. it’s usually worth it. in this case, it absolutely is worth it. nonetheless, the preparation and energy spent is significant and stressful.

2) i have been in an acute detoxification, a severe herx, for six days. while still in a treatment reaction/herx, i started the biofilm closing portion of the iv antibiotics. immediately, i began to experience serious central pain issues, burning, prickling skin with circular rashes turned to liesons, turned to scabs, turned to itchy, peeling spots spattered across my body. those symptoms are moving through their motions and finally starting to heal, but my skin has rarely felt so sensitive. i had to turn my clothes inside out because the seams were irritating my skin. it’s like having razor burn over my entire body. sometimes i can forget it’s there, but just as soon as i forget, it comes barreling back and cuts the line to the front of my thoughts. from head to heel, i am uncomfortable and itching. i couldn’t sleep, even after my best attempts and sedation efforts.

my brain has felt jumbled and foggy. i’ve been emotionally unreasonable and sad. dare i say that i have the most commonly blamed symptom for women who bust out any feeling that someone else feels uncomfortable about, sees as an overreaction or somehow disproportionate to the situation at hand? i do. i do dare. on the rare occasion that i have pms, i am certain that either no one loves me or that the world is ending or both. though i can call as spade a spade, i can’t quite shift the fears and irrationality. so i go with it. but that’s hard on a partner when this is the last time you’ll see ’em for the next two weeks. so i gotta move through that and give love to my partner, gratitude that he is taking care of our house and leave good directions for the house and animales sitter for the days he’s commuting. house sitters are the best. they get to unapologetically eat anything they find. “raid the fridge like a babysitter,”michelle tea would say.

3) in less than two weeks, i will be performing with my dad. i’ll sit on a stage, my ukulele perched in my lap, nervously hammering out chords and singing at a benefit. my dad will anxiously play lead guitar. i will try to keep my nerves separate from his so that i won’t fall into a serious of mistakes while playing out. and i’m waiting… i bought a new ukulele, a tenor, because i wanted an electric to play for this event. however, there is a chord i cannot yet reach on the tenor, and i needed the next size smaller, the concert size. i ordered an electric concert ukulele awhile ago, but still don’t have it. it should have been here days ago, been here with enough room to let me practice on it, get a feel for it, become acquainted…

right. so. whatever. i’m freaking out, in pain and unable to sleep, but what else is new? i’m going to get away from this bright screen and meandering train of thought and see if now, at 3 am, if i can finally catch sleep. lawdess knows i need it!

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having concluded this set of iv antibiotics last night (marking the start of almost a month off!), i’m feeling better today. maybe a big part of that is simply being done for now. i have been avoiding indulging the persistent thoughts about wanting to quit treating, but they don’t seem to be going away. ha! avoidance isn’t the answer? what a surprise. as much as i want to bury my head in the sand and pretend that quitting now would leave me better off than when i started, i know that it’s a temporary and delicate state of improvement. if i allow myself to really run that tape and listen, i start to hear how ridiculous i’m being. the internal argument i’ve engaged in shatters. these infections/diseases are progressive, otherwise i wouldn’t be in the place i’m in now. and if i were to end my long run of antibiotics, herbs, and anti-malarials, i might feel better for a little while. but sooner or later, the spirochetes will recolonize and the lyme disease will spread, leaving me right back where i started. cost benefit analysis? complete waste of money, time and suffering. the truth of it is that it’s not worth it for me to give up. the costs are way higher than the benefit of not living in fear of the next set of drugs.

and i am scared. the brain, biofilm battle isn’t tender or even tenable. though i am loathe to admit it, every time i set up the iv bags, an acme anvil looms above me. i know that it’s going to drop down on me. i know that i’m going to be crushed under the weight of everything, so auto-pilot kicks in. i go through the motions. i sit for hours while i infuse. i feel the small and painful changes in my body. i remind myself repeatedly that i have x number of days left. but for now, i have lost that fervor i had for each treatment getting me closer to the end, to an asymptomatic life that doesn’t just resemble a healthy existence, it is one. that future is there, sitting on the horizon, out of reach but not out of reason… if i stay the path. and i’m a stubborn, strong-willed woman. i have shaped my mentality to reject any idea of “i can’t do this.” i have made some amendments to that mindset. for example, there are things that i have to say, “i can’t do this safely, so i shouldn’t do it,” but in general, my mind has a pitbull jaw that won’t easily let go.

my postman just came to the door to deliver a package. after i left home and until we moved to the woods, i’d lived in apartments. i never saw the postal workers who delivered my mail, unless i happened to be coming or going as they pushed paper into tiny boxes. we never exchanged more than a hello. at my parent’s place, the mailbox isn’t by the house, so i’ve never actually had any sort of relationship with the person who brings the world to my doorstep. in a fancy neighborhood (which we had no idea we were moving into since we knew virtually nothing about the town we chose to move to. equal parts instinct, impulsivity and amazing bones of a house i wanted to renovate are what brought us here), if you’re home ALL THE TIME, you get to know your postal person. and mine is joe. and joe is the nicest person, maybe ever. so i’ve had a holiday card for joe sitting by the front door since december, but i hadn’t seen him until today. okay, why am i telling this story? sigh.

when i opened the door and we exchanged our cheerful “it’s been so long”s, he said, “you look so much better than the last time i saw you.” he wondered if i’d been feeling better. i told him i was, that it’s been slow-going, but that i’m improving. he said, “seeing you attached to i don’t know how many different things on your iv pole, you looked so sick. i could see how much suffering you were going through, and it really put things in perspective for me.” i asked him what he meant. he told me that his elderly father was diagnosed with cancer and that he was distraught over it. at his father’s age, aggressive cancer treatments would cause so much damage that their cost benefit analysis led to essentially doing nothing. “the doctors told us that something else will kill him before the cancer does,” joe said. and then we talked about suffering and chronic illness and cancer and losing people you love. “since i got this route,” he said, “i’ve seen you so ill. it’s really wonderful to know you’re doing better.”

this exchange resonated with me because, while i try not to compare my experiences with anyone else’s, there’s always someone whose story hurts my heart, whose pain seems so much bigger than anything i could endure. why is it that imagining someone else’s situation is harder than your own makes things more bearable? i think we hold these people, who are people, not illness, cancer or disease, we hold them in our hearts, wishing them relief from their suffering. for me, on a sometimes conscious and sometimes subconscious level, i am giving the ones i love, the ones i don’t know, but whose stories have reached me, and the ones i know only in passing, so much space in my intentions. being sick has given me deeper compassion for human experiences. it has allowed me to have very intimate moments with virtual strangers about their feelings and their families- things they may not share with anyone else. i once had a doctor tell me about her daughter’s autoimmune disease and that she was 16 and needed a kidney transplant. she said, “you’re the first person i’ve told this to where i haven’t broken down and cried.”

i want to use my experiences to cultivate a deeper, gentler love. sometimes in one appointment, my interactions with doctors, nurses, phlebotomists and others who have some insight into my health problems, leads to hearing sad stories about their family members who are sick or dying. it’s heavy. it’s intense. and i’m grateful for it. i use this blog to talk about how i feel about everything that’s going on. i’m glad i can be a person that people feel comfortable letting these stories and feelings out to. and it’s really nice to hear that someone, who has been an occasional witness for the past year or so, say that they’ve been thinking of me and that they’re happy i’m getting better.

so i stay the path…

the exhumation of a poet.

February 10, 2013

i am sitting on the couch, surrounded by small things, medical things, clinical things and two dogs who are visibly pouting now that the sun is past the windows and there aren’t any sunbeams for them to sprawl in. i get it. life’s small pleasures. i’m still snowed in, which is fine, really, because the new genesis of my herxing rash is covering everything. my face is speckled with circular red marks. my lips are peeling. my neck feels like it has holes in it.  and i might as well have stuck my face over some seriously caustic chemicals and done alternate nostril breathing until i got chemical burns up in there. my nose is running, another detox symptom, which makes the whole thing even worse. i fell asleep last night after getting intense stomach cramps and puking in the guest bathroom. my skin feels like it’s on fire, stretched too thin over aching muscles. but other than the nose, this is old hat. i should be used to the effects of this medicinal combo. there are some things you don’t get used to and those things, in my experience, pave my road to dread. i’m still in this treatment and already i’m dreading next month’s.

this is not useful thinking. this is silly and unevolved and human of me to worry about future suffering. it’s also not very logical. from acute anxiety to the inside of my nose looking like someone’s who is addicted to chemical inhalants, my symptoms fall into the broad category of a jarisch-herxheimer reaction, a healing crisis caused by an excess of dead spirochetes. this intense level of detoxing indicates that the meds are doing their job, that i am making real headway blasting apart biofilm colonies and clearing space in my infected brain. i know these are good signs, which is why my fears are so illogical. herxing is feeling worse while getting better.

i don’t feel like figuring out how to transition from what i just wrote to what i want to write now. pablo neruda is a non sequitur, but i feel like i’m caged in a literary box. until something changes in my progression, i am a broken record, spinning out the same stories. so here i gracelessly smash into a different train of thought.

i used to read pablo neruda’s poems in spanish to my lovers. i liked using his brand of romance, of adoration, hidden in the folds of a language my partners did not speak. i read the poems aloud to myself in my childhood bedroom. i translated them into english, but the words did not feel the same in a foreign tongue and i felt embarrassed when reading twenty love poems and a song of despair. his descriptions were so vivid, raw and erotic… i’m sure if there had been someone there to see, they would have noticed me blushing.

they are exhuming the body of pablo neruda in an attempt to discover whether or not neruda really died of cancer 40 years ago or if he was poisoned by pinochet. i wonder what good it will do, for the world to know if our beloved poet was murdered by a violent dictator. would knowing the truth of his death transform the legacy of his life? i once wondered if it would be possible to exhume one of my family member’s bodies to see if he died from late-stage lyme disease. but what would knowing change? would i fight harder for reform, put my back into activist work, call that work in his name? i don’t need to know why the dead died in order to understand that this is a life or death fight. i hear that in your emails and stories. i know that we are fighting for our lives. i know that you are fighting for your children, so that they might know a future free from disease. i know that we are all scared, sometimes dreading the hard path ahead, saddened by the rough terrain beneath our feet but moving them anyway.

rather than continue to chronicle the same things, i want to leave you with this poem, by pablo neruda, of course.

don’t go far off

don’t go far off, not even for a day, because — 
because — i don’t know how to say it: a day is long 
and i will be waiting for you, as in an empty station 
when the trains are parked off somewhere else, asleep. 

don’t leave me, even for an hour, because 
then the little drops of anguish will all run together, 
the smoke that roams looking for a home will drift 
into me, choking my lost heart. 

oh, may your silhouette never dissolve on the beach; 
may your eyelids never flutter into the empty distance. 
don’t leave me for a second, my dearest, 

because in that moment you’ll have gone so far 
i’ll wander mazily over all the earth, asking, 
will you come back? will you leave me here, dying?

 

it’s not quite 5am and i’ve already been up for an hour. i’m not going to pretend that i’m awake awake, but i’ve eaten some super food cereal, taken the dogs out, started a load of laundry and decided to write. i guess that seems pretty awake.

yesterday was the second day in an eight-day cycle. i’m using the same round of iv antibiotic and oral meds and herbs that i’ve been taking for the past five (i think) rounds of treatment. this particular set of protocols targets biofilm in the brain. most patients of dr. j’s only do two rounds of it. i was in the middle of my second time with this treatment when i got sepsis. after i recovered enough from that to resume my treatment plan, i did another two rounds. and now, months after the downfall began and the rebuilding commenced, i’m at the start of another set, hopefully, my final set of iv antibiotic treatments. after this, i’ll have my picc line removed and will make the transition into oral antibiotics. phase iii.

only 25% of dr. j’s patients need intravenous therapies. “only the sickest,” he says when he’s telling me about it. i was one of those, one of the the cases that has run the gamut of lyme related symptoms and sicknesses. i had gone from paralytic to crazy. my body has given out in a myriad of ways and failed to respond to treatments- until now. during this particular set of meds, a two-part biofilm slaughtering combination, i can feel the changes. previously i’ve taken an oral antibiotic, rifabutin, with this cocktail. i have become increasingly more sensitive to it. the last time i took it, it was four days of unrelenting pain and swelling. the swelling is caused by inflammation in the veins, from vasculitis and a severe herxheimer reaction. dr. j likened it to leaky gut syndrome. essentially, the liquids in my body were seeping out into places they shouldn’t go. subsequently, i swelled up like violet beauregarde in willy wonka and the chocolate factory. so far, just beginning day three, i have had some swelling, but nothing like what i have been going through. my fingers are too swollen to open the clasp on the dog’s leash and my feet are to puffy to fit into most of my shoes. i have to consider how full a glass of water is before i try to pick it up. so… i’m swollen, but improved from last time.

the first four days on this quick and dirty killing field, are designed to open up the biofilm. “not unlike unzipping it,” dr. j says. i tend to swell up, get headaches and sleep through these four days. my central pain amps up and feels like pinpricks, or as if i’m being bit by tiny insects. dark red spots and welts have bubbled up to the surface, covering my neck, my shoulders and back. there are some on my face and thighs. and there are some that have not gone away for months. i have some fears that they won’t ever fade… then i have one day off before i start the second half, which targets the wild spirochetes and protozoa in the blood stream and it zips closed the open biofilm. when i had sepsis, we opened up all kinds of biofilm with some of the heaviest antibiotics, but had no measures in place to kill it. i think this is a big reason why i was so sick after. it was like having an acute lyme infection on top of everything else. the last few days of this treatment are laced with insomnia and massive brain fog. unable to sleep well or uninterrupted, i become more anxious. the detoxing during all of this is pretty intense. today i had chills and a mild fever. my skin is itchy and uncomfortable, riddled with red bumps.

let me not forget my vanity. the redness does come out on my face, in particular, my nose, lips and what’s in between. my eyes are puffy and my lips peel. i’ve taken to wearing 1950’s silk scarves to cover up the splotchy, magenta skin on my chest. when/if i leave the house, i wear a costume, of sorts. and if i do nothing else under the cultural weirdness of being japanese, i’ll let it be wearing strange patterns and clothes. 

i’ve exceeded my being awake limit by a few hours. i can’t seem to string together more than a couple before at least some part of me is already asleep. in this case, it’s my brain that’s napping. buenos nachos.

my internet ate it.

February 1, 2013

i have been formulating an almost mathematical equation to explain my month-long hiatus. it goes something like this:

x = (a+b+c+d+e) where

x = total number of posts = |0|

a = 7290 minutes, if the sum of 6 seasons of lost = (114 episodes x avg 63.94 minutes per episode)

b = (apathy + depression + brain fog)

c = physical pain (where the number of days where my hands were too swollen to use > days with functional hands)

d = number of days spent out of town

e = number of hours playing word bubbles on lumosity.com in an attempt to attain a perfect score

thus, x = |0|

or is it the number of blog posts = zero?

considering that i didn’t pay close attention during algebra 1 (which lead to intense tutoring in the back of mcdonalds during my semesters of algebra 2 and trigonometry), i think i’ve given a vague nod to the partition postulate here. the whole is equal to the sum of its parts, right? my whole is a big, fat zero. i’ve written nothing… almost. i have started to return emails and inquiries, but i haven’t successfully pressed send. sometimes that’s because the black hole of the internet has gobbled up my almost finished responses and other times it has been because i’ve wandered away from the computer. either way, i’ve been completely incommunicado and this blog post is just to say that i’m sorry. i think i’m back. i think after 20 months of post-diagnosis documentation and treatment, i burned out. maybe i just left the fire smoldering. this is me, fanning the ashes to reignite a flame. and i kicked it off with a terrible attempt at proving a theorem.*

in order to make this post somewhat worthwhile, here’s a link to a white house petition asking the IDSA to reconsider its treatment guidelines for lyme disease. this is actually incredibly important. this is how we’re going to get insurance to cover our treatments, the medical community to recognize our disease and how funding for lyme and other tick-borne disease research can actually happen. the value of my theorem was zero. signing this and having our voices heard is invaluable, priceless. if you don’t already have a white house account, this is a great time to set one up. i, for one, fully believe that making my voice heard is my civic duty.

*overdramatic bow