the low-down.

October 25, 2012

i haven’t wanted to think about last week. at least that’s the best reason that i can come up with for why i’ve continuously started to write the post-hospital wrap-up, but haven’t moved much farther into it than a paragraph or two before jumping ship to read any number of inconsequential articles or to hammer away at my ukulele. yesterday, while standing under the eaves on my back porch, waiting for one of my dogs to return, the gnawing reality of everything i’d been through started to eat away at me. i think, in spite of the fact that i string some words together on a computer screen, i don’t really give much credence to my experiences. maybe that’s partially because i’m a writer and always have been. i’ve been able to create a nice buffer zone between myself and anything or anyone. i’ve hidden in the curves of my stories and ducked behind poetically constructed prose (that’s not the material i publish). i’ve kept my own story at arm’s length. though i’ve bound them together, i’ve avoided marrying my feelings to my self-awareness. yesterday, watching the rain ping off of yellow and orange leaves, thinking about how soon i’ll be bundled up watching snow fall instead, the gravity of this blood infection sank in. i could have died. on a scale of nothing to everything, this was a big fucking deal.

i was released from the hospital early sunday evening. by that time, i’d been critically sick for ten days. i’d been hospitalized for six nights, only two of which felt bearable. it’s been four days since i was sprung and i’m feeling better, weak and easily fatigued, but considerably stronger than i’ve felt in weeks. i feel fairly certain that i had this infection, a gram-negative bacilli called enterobacter cloacae, for a long time but the antibiotics i was already taking kept it at bay. in an earlier post, i laid out a series of numbers- days i felt sick, was on treatment, was detoxing after my course of iv antibiotics, was feeling okay and then returning to feeling sick. i figure that i’ve had the infection for at least that long. this is a guess. there’s no way to tell how long i’ve had it or how i got it, but believe me, my mind is constantly siphoning through the past couple months, trying to unravel this mystery. because i’m so meticulous about sterility, it’s been hard for me to swallow the idea that it was somehow my fault that i got bacteremia. what a pointless use of time- trying to find someone to pin this on. it happened. end of investigation. **addendum 10/27- i actually DID have sepsis. the photos i took of my chart (since i wasn’t allowed to see it or provided with the lab work results i requested) read as a diagnosis of sepsis.**

every surface of everything is laden with bacteria of all varieties. as someone who has been immunocompromised for some fourteen years, i have become increasingly wary of germs. the inability to control my environment was a huge reason for moving out of new york’s five boroughs. i couldn’t stop strangers on the subway from sneezing or breathing on me. i couldn’t prevent my partner from touching surfaces in public places (that tactile little creature touches everything) and bringing bacteria and viruses into our apartment. and i couldn’t consistently avoid all of the subsequent colds and flus i caught. as a bonafide germaphobe, i’m a little hung-up on how this particular bacteria entered my bloodstream. the barrage of blood tests performed by the hospital confirmed that enterobacter cloacae was not only in my chest catheter line, but also in my bloodstream. in order to find out what’s happening in the blood, they draw from the line and from a peripheral vein in one of your arms. they found the gram-negative bacilli in both and though they cultured the tip of my cvc line, they were unable to determine wether or not the line was the source of the infection. though i keep running scenarios, i suppose it’s not really important how i got it…

left untreated, bacteremia can turn into sepsis, which, if allowed, can cause septic shock, a condition with a high fatality rate. i’m not sure where the line between bacteremia and sepsis is drawn. by the time i was actually admitted into the hospital, my fevers were spiking out above 104 degrees. no matter what i did at home to drop my temperature, it wasn’t enough to bring it below 101 degrees. i closely monitored my heart rate and blood pressure. my blood pressure slowly dropped as my heart rate steadily rose. it was because of these three factors that i knew something serious was brewing in my bloodstream.

i caught it early enough, but the hospital did not start treating it immediately, so even though i was locked into their system, the infection persisted for another 24-hours before i was given antibiotics. i responded quickly to the treatment. my fevers subsided and i started to recover, but all that lost time wreaked havoc on my body. i’ve been thinking about how my brother and my partner are massively stressed out by work this week because they both missed all of last week. they were busy sitting at my bedside, watching me sleep, advocating for me when i couldn’t, keeping a lookout while i snuck my medications from a nightstand drawer. they work together, making their absence at a very small company a painfully noticible one. this is, in part, how i’ve measured the severity of my condition. with so many months (or years, really) of persistent sickness, i can’t assign too much value to the last couple of weeks. it hasn’t been so different from my daily experience, so i’ve minimized how i felt. this harrowing experience is a drop in my medical bucket, but because of the way my case was mishandled for the first couple of days of my hospitalization, it made a bigger splash than it should have.

interventional radiology removed my central venous catheter toward the beginning of my stay, a necessary measure to eliminate the bacterial infection. this straight forward procedure consists of local anesthetic, a scalpel and someone pulling the line from my chest. i had a tunneled line, which just means that there was a cuff on the part of my line inside my body. this cuff is to help prevent the line from being pulled from my body. after 8 months, a lot of tissue had grown around the cuff and in order to remove it, that tissue had to be cut away. twice i told the doctor about the cuff. nevertheless, after the numbing of the area, he simply yanked on the line. “there’s a cuff!” i yelped. he told me he knew that and then asked the nurse for a scalpel and proceeded to hack away at my body, tugging on the line after every cut. it took at least five tries before he freed the line. they stuck a folded 4×4 over the open wound and covered it with tegaderm. i’m bruised all over.

my new picc line (pictured while still in the hospital).

a day or so later, the same doctor installed a picc line in my left bicep. i guess i must have pushed them to put in the exact same tunneled powerline i’d already had because it seems that tunneled picc lines aren’t very common. the vein used to thread the picc line through my arm is so small, if the picc is accidently pulled out, it’s not a huge deal. this is a significant difference between a cvc and a picc. if a cvc is ripped out, the site is so big that there is a chance you could bleed out. i’ll need to keep the picc line for longer than the two week course of iv antibiotics used to treat the bacteremia, so i wanted to have one that wasn’t going to be easily dislodged. i have two bowling ball, french bulldogs who are unpredictable and incredibly fast. sometimes, either trying to escape or attack the other, one will hurtle itself from the floor, onto the couch and across my lap to get to its bed. the chance that one of them could catch my line somehow and rip it from my arm seemed high. after all of the problems i had with this particular hospital, i cowed them into listening to my demands. this, i think, is how i ended up with my tunneled picc line. anyway, when they placed that, they bruised the bejeesus out of my arm. again, the dressing they slapped on my open wounds was subpar. though there was gauze, the larger insertion site wasn’t even covered by anything other than the adhesive dressing. on sunday night, my partner and i changed my dressings. pulling off the existing coverage was excruciating. the top insertion site had formed a scab on the surface and a thick mess under my skin. that all came out, stuck to the adhesive. i used a sterile suture removal kit to cut away the stitches holding my statlock in place. nothing about our home procedure was easy or painless, but once we’d finished sticking biopatches (little donuts laced with clorhexidine) on every single hole, both my chest and my arm felt better. neither of my home health aides were pleased with the fact that we changed the dressing ourselves, but they couldn’t deny the thoroughness with which we did it.

so… now i’m at home, resuming my normal routines, only slightly annoyed by the fact that i have had nurses here every day showing me how to administer meds, taking my partial medical history and giving me long overviews of how to care for my picc line. i am patient during these two-hour sessions. i only express slight resistance when one nurse insists that she return to change my dressing, something that needs to be done at least once a week. that’s where i am right now, writing from my couch, waiting for her to ring the doorbell and swap out the old dressing for a new one. in about a week, i’ll be done with this round of antibiotics and home care. i can go back to self care and my own schedule. the bacteremia will be behind me and i’ll be able to move forward with my tick-borne disease treatments, just in time to head to boston for the ilads conference.

and i’m going to take this opportunity to randomly confess my inappropriate love of hyphens. it’s true, i’m enjoying overusing them, but not as much as i’m enjoying being at home.

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the tides have changed.

October 20, 2012

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

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

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

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

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

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

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

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

mistreated.

October 19, 2012

it would be hard to accurately describe the ridiculous horrors that i’m experiencing in this hospital. i’m a prisoner… no, really. the entrance doors to the floor i’m on are locked. if i do leave, it’ll be ama (against medical advice) and i will be stuck with an astronomical bill because my insurance will refuse pay for the treatment i’ve received. the earliest they have me slated to leave is monday. can i take 6 days of trying to explain my diseases, my treatments and why my doctor is in d.c. to every nurse, every nurse supervisor, and every “hospitalist,” whatever the hell that means? i think it’s the unofficial term for someone who covers the hospital’s ass, legally, by limiting the patient’s ability to advocate for themselves. it seems like no matter how far along i get with the infectious disease specialist or whomever else is actually giving me face-time, when it comes to getting the medications i’ve been taking faithfully, regularly, on a schedule, without fail, it’s the hospitalist that gets blamed for these medications not being available. they tell nurses that the meds aren’t medically necessary (what qualifies them to decide that? what are their medical specialties?), but these doctors won’t tell me to my face that i can’t have my meds. let’s remember that the first hospitalist i saw told me that lyme was easily treated by two weeks of antibiotics. he’s in the wind. honestly, he ducked me on the nightshift and told a nurse to tell me that the morning hospitalist would address my questions.

hospitalist isn’t even a real word.

i just had a focal seizure and because the nurse didn’t see it (how could she? it lasted 45 seconds. it’s not like they come running when you push the button), she won’t give me medication until a doctor clears it.

i’m gonna pushback. once i’m out of here, when i’m not furious, when i can think a little more clearly. and i don’t know what i can really write on here because i don’t know where i’m going to take this experience. what i know is that no one should go through this and yet even from the comments on my last short post, it’s clear that this is something that happens consistently to us.

news from the hospital bed.

October 18, 2012

i’m writing after two or three days of mayhem. i’m writing with an iv in my left hand and a bloody hole beneath my right clavicle. i’m also writing with a mysterious blood infection and a huge chip on my shoulder. though it’s a necessary evil, it’s really a horrible thing to have a fever of 104.2 while trying to explain why my chest catheter is medically necessary and how chronic lyme disease does exist. the first doctor i saw would only speak to my partner. he hardly looked me in the eye. the second doctor at the second hospital asked me why i had a chest cath. i told him it was for antibiotic treatment for chronic lyme disease and co-infections to which he replied, “lyme disease is easy to treat with a two week course of antibiotics.” so now that my fever is down, my gloves are off and i’m starting a battle.

i’ll write more later. i’m a prisoner of the 5th floor of a hospital and have nothing to do but research and write.

the news from your bed.

October 15, 2012

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

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

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

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

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

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

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

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

if you ain’t got love…

October 13, 2012

i need to write. i have to set a precedent for myself on day one of wandering back into the iv antibiotic/herbal slaughter house.

i fucking hate this fucking place.

oh that’s right. i said it. my sailor’s mouth has been revealed! of course, now i’m wondering if i should go back in with some asterisks… this isn’t a family show, but i’m not really looking to offend anyone either. i guess i want to convey the heart-wrenching flux of feeling like an almost normal human being one day and then the next, suddenly being unable to get off the couch, walk through the living room, past the kitchen, around the corner and into the bathroom. i want to tell you that it was humiliating and that my brain flooded with thoughts so heavy i couldn’t hold them long enough to decipher them. my partner had to inch along with me, moving my iv pole while i clutched a four-prong cane and teetered unsteadily forward, one baby step at a time. i nearly fell three times. when we made it to the bathroom, he had to stand directly in front of me, place his forearms under my armpits and lower me onto the toilet. he had to lift me up when i was done. he had to help me back to the couch, repeating the same tedious process we used to get to the guest bath.

i write that he “had” to do these things, but that’s not the truth, is it? he chose to help me, even when i could hardly ask for help. earlier today, while alone on the couch, one of my dogs was barking like a rabid little monster. i don’t know if it was noise sensitivity or the effort it took to try to yell for him to stop (which he did not. he barked on and on and on), but it triggered some incredible back spasms. the next thing i knew, i was face down in the dog beds on the couch. i love those creatures, but i don’t want my face anywhere near their beds. there i was, smooshed and stuck, feeling totally helpless and in searing pain. i texted my partner. i couldn’t see the screen. i thought i texted the word, “help.” i must have, because he came running.

he chooses to be here. with me.

creator, please allow me to always remember that i am so truly and deeply blessed. today has been brutal, feverish, nauseating, filled with dehydration and excessive “voiding.” it’s been a day that only my closest friends, the ones that either have lyme or practice medicine, could listen to without flinching. actually, i’m not sure even they could hear the play-by-play of how october 13th went down.  so why am i professing my good fortune? because i have a partner who, scared as he is when i have episodes, tries his hardest to help me and i can’t imagine how i would be here, getting well, without his support.

i said that i’m writing this to get the ball rolling, but i think i’m really writing this for him. sometimes i’m too hard on him. sometimes i have no patience and no right to be impatient. sometimes i act like a petulant child, hovering between tears and a temper tantrum, while never really diving to either side. sometimes the things that my body goes through are terrifying. today my frayed nerves seemed like permission to snap and snark at him (nope. permission denied. sick or not, this was not acceptable behavior). i ask a lot of him, emotionally, financially, physically… and he shows up. the silver lining in my terrible, horrible, no good, very bad day is my incredible partner.

we are loving the good days, the weeks where i realize i’ve taken only one painkiller in three days, the dinners i can sit through with company i’ve been dodging for years. we celebrate all the great moments, the breaks from this battle, the downtime and we know that once that iv treatment start date rolls around, day one is going to suck. in spite of the fall sun that sinks behind our tree line long before i wish it would, i am grateful for the good times and they are coming closer together and lasting longer.

i might fucking hate this slaughterhouse, but i have to admit, i do love the kill.

the paralytic interlude.

October 8, 2012

i had intentions of writing again yesterday, but i figured it probably wasn’t going to happen. it’s not as if i’m manifesting genius works of written art here, but i still didn’t feel like i really had it in me to give the follow-up on my latest appointment with dr. j.

aaaaaaaaand enter my paralytic seizure (oh jesus! i just looked up “paralytic seizure” and the nih report i read said that most of the 11 patients in this particular test group had brain tumors and brain infarcts. i hate you, internet. i hate you). so maybe i didn’t have a paralyzing seizure, but i had an event in which i was absolutely unable to move. i was already arranged in a small pile of myself on a stack of down pillows when it happened, so it wasn’t as if i collapsed on the floor or even moved an inch. for two minutes or so, i felt trapped inside myself. my partner, bless his hopeful, giant heart, came in the room and started asking me questions. these were not medically investigative questions, rather things like, “do you want to watch something on t.v.?” and “are you hungry?” his inability to immediately recognize that something was critically wrong with me was both infuriating and frightening, unreasonably so on my part. it may have been the moment when he leaned across the couch, hovering inches above me, staring and saying “are you okay?” that i really started to lose my mental shit. i have some claustrophobia issues regarding personal space. if i feel cornered (back against a wall) and if someone starts close talking, i want to (and sometimes do) physically push them back and skitter away. this is some old, deep traumatic shit, i know, but it occasionally hits me like a ton of bricks. anyway, he wasn’t responsible for a different response and once i had my mental faculties about me, i knew that. in the moment, i was entirely operating in a fear based state.

the event was similar to the hypnogogic states i sometimes experience while sleeping, usually during daytime naps. but there was a huge difference between my sleep paralysis and what happened last night. the hypnogogic link (above) covers the bases of my experiences pretty solidly. sometimes the sleep paralysis is scary because i feel like there’s someone, something menacing in my house, or standing at my bedside, and i can’t force my body to move. my eyes flutter, but won’t stay open. i try to will parts of my body to move. i think, if i can just make my right hand move, i can wake up. i tried the same techniques to pull out of last night’s episode. they were totally ineffective.

after a brief time, one that felt like an eternity, i came out of it. at first, i was literally speechless. as language returned to me, i blame-stuttered at my partner. then i actually screamed, high-ranged and loud, at him. i don’t even know what i said. in the five years that we’ve been together, i have never once screamed at him. i think maybe, possibly i have shouted at him twice… and he never yells at me. it’s just not how we work and i love that. alright, so i screamed at him and then eeked out some words about how i was essentially catatonic and how it sucked. “i know,” he said. “i’m sorry. what could i have done? what did you want me to do?” i had no response to that. there wasn’t really anything to have been done, short of calling 911, which i did not, and would not, want. no emergency room is going to know what to do with me and i have no intention of subjecting myself to the exhaustive tests they would’ve run.

i felt angry, inexplicably angry. he got a lactated ringer and helped me set up an infusion. still confused and mad, i dragged my iv pole outside, sat on a stool and stared out into the rainy night. he followed me and sat on the wet deck, socks and all, and quietly waited for me to process what had just happened. he gave me an ativan to help soothe my fried brain.

i started to talk about how i felt, how while i was unable to move or speak, i was terrified that it could be guillain-barre syndrome, an autoimmune disorder that attacks the nervous system, often rendering people paralyzed, silenced, and trapped in a prison of their own bodies. a dear family friend suffered from guillian-barre years ago. i have always felt so much sadness reflecting on his suffering. not wanting to bring up such a painful memory, i have never asked him about it. still, i have so much empathy for what he endured. at the time, i wasn’t really aware of what was happening to him, perhaps that’s why it stuck with me. i didn’t reach out or give support (i think i was a teenager or just off to college) and i felt regret and shame for not showing up. maybe that’s why this disease has always haunted me. recently, i read the memoir, the two kinds of decay, one woman’s horrifying experience with a rare form of this disease. there were so many things in her story that i identified with, not the syndrome itself, but the feelings and reactions to the onset of illness when you’re young, bright and planning for a life you never expected you couldn’t have. i related in ways that made my heart ache and yet i felt no right to identify with her story because it seemed so much worse than anything i’ve ever gone through. it’s a sad and beautifully written read, if you’re looking for a good book. a year ago, i wanted to recommend it to my friend, but i decided it would probably be too painful for him to read, so i kept the recommendation to myself.

when we went back inside, i realized that my mental processes were… affected. suddenly, i was overwhelmed with guilt (i don’t typically do guilt. born-and-raised unitarians often don’t quite grasp this concept). i apologized profusely for yelling. i apologized for my episode. i apologized for nothing. i saw the sadness in my partner’s eyes, what i imagine was a combination of fear and the helplessness he had felt. i wanted to fix that, but my mouth wouldn’t speak any of the words i wanted to say. all i could do was whisper, “i’m sorry.”

i tried to figure out what had happened. a couple hours earlier, i had showered. bearing in mind the horrible herx of my last shower (yeah, yeah. i don’t shower all that often. it hurts my skin. i have to change my dressing afterwards. it’s an all-around pain in the ass), i tried to keep it cooler and shorter. but it was the only explanation i could come up with- somehow, the shower prompted a healing crisis or acute detox that affected a very specific part of my brain. though i’ve no idea whatsoever if this is right, i suspected the one inch spot where i had a severe headache was the origin point for whatever it was that happened. an hour after the seizure, i was feeling better mentally, but physically drained.

jarisch-herxheimer reaction: spots on my right leg. six hours after noticing them, they are starting to fade.

this morning when i woke up, i noticed red blotches on my shins. i haven’t done a full nude inspection, so it’s possible that there are more of these spots on other parts of my body. however, i feel like these are most likely a detox symptom and i wonder if the shower is what prompted them.

originally, i titled this post, “the oft promised, rarely delivered, part two.” i guess, instead, this was the interlude. i will write about my doctor’s appointment, i really will. i’m just easily sidetracked. surprise. surprise.

progress.

October 7, 2012

i’ve been unfaithful, letting too much time pass between blog entries. some of this is for good reason, and by good, i mean that i’ve been healthy enough to start my days with more activity. i’ve switched my morning routine from sitting at the computer and writing, to playing the ukulele and singing for a couple of hours. after that, i’ve run my energy and creative energies down and i no longer have the capacity to string together words in a coherent manner. learning a new instrument is also a great excuse for the absence of blogging. for years and years, i felt as if i was unable to learn anything new, my mind was incapable of absorbing information or accessing information i once knew. all of that is quickly changing, shifting and those feelings of loss are fast becoming obsolete. each week, i catch myself talking about something i had previously forgotten or holding conversational court with someone who had been able to railroad me for the last five years. occasionally i have to hold back so that i don’t conversationally annihilate someone by turning what’s supposed to be a friendly chat into a debate. in my current treatment cycles, we’re targeting cystic forms of lyme/co-infections and biofilm in my brain and it’s working.

the other primary reason for my lack of writing was that i was also really sick. due to extreme myalgias, arthralgias, migraines and exhaustion, i held off on starting that last iv antibitioc cycle. 4 days of feeling like that + 8-9 treatment days + 4 post-antibiotic detoxing + one day of reprieve + a hot shower that caused a horrific 24-hour herx= 19 days where i was down for the count. in a 21 day cycle, that was a lot of sick time.

on day 20, i headed to brooklyn where my social calendar exploded. i know i’ve said before that i’m trying to make up for lost time with my community of incredible friends. it’s been so rewarding to revive my dormant relationships, but it’s also really tiring. i don’t know if this is because of the level of intensity of my interactions (we’re not a shallow group of people and 9 out of 10 conversations run deep) or if it’s just that i’m unaccustomed to interacting face-to-face with anyone other than my partner and my brother. it’s probably a combination of these factors along with some other ones i simply haven’t considered.

on day 23, i set an alarm for 4:40am, sleepily and painfully cruised through the necessary tasks to get out the door, called a car service and rode in the dark to penn station. i boarded an amtrak train at 6:00, slept uncomfortably but heavily for most of the ride, woke up in washington d.c. and scrambled off of the train. i immediately reached in my purse for my phone. it wasn’t there. i gave myself the pat-down. i rummaged frantically to no avail, so i raced back to my train car and started desperately pawing through the rows of chairs. i couldn’t quite remember where i was sitting, so i weaved around the front of the train car like a rat in a maze. a kind amtrak employee asked what i was looking for and assured my that we would find it. moments later she called out “honey, it’s right here. you can breathe again,” and she handed me my iphone. i thanked her again and again. i do not lose things. i do not lose expensive, luxury items that i cannot afford to replace. i keep track of everything i drag around with me and if something isn’t in its designated spot, i panic and beat myself up until i locate it.

i hopped on the metro (d.c.’s clean and slow subway system) and made my way to georgetown. i walked from the metro station at george washington hospital, where i had my line placed, to my doctor’s office. i arrived at the exact time of my scheduled appointment.

this play-by-play of my travel day may seem boring and unimportant. i’m sure that i’m giving way more detail than necessary, but i’m trying to paint a picture of how active i was able to be. this wasn’t an easy day trip. i was sleep deprived. i didn’t have someone with me to haul my suitcase of flushes and gravity bags of antibiotics. i accurately read maps, used public transportation, walked instead of catching a cab and i made it on-time. this new ability to get myself from a to b to c and back again all by myself is remarkable. a day that began before 5 am and didn’t actually end until 2 am the following day (sleeping in someone’s living room means you don’t get to determine your bedtime) is the first day of its kind. i pushed myself to the limit, maybe a little beyond that, but i survived the following day without having severe bodily repercussions. my mind, however, was fried and i struggled with a lot of word blocks, forgetfulness and elevated levels of anxiety. but my brain is our current target, so the manifestation of these symptoms seems like par for the course.

my appointment with dr. j was exciting, filled with good news and confirmation of significant progress. to keep this entry palatable and shorter than i actually want it to be, i’ll write more about my appointment in part two.