did a worldwide lyme protest lead to me a lyme literate rheumatologist?

yes. yes, it did.

in the event that you haven’t yet heard, there will be a worldwide protest for lyme disease awareness on may 10th OR 11th. it seems less like a protest and more like a worldwide rally to me, but maybe that’s just semantics. whatever we call it, it’s a visible form of resistance and that’s a key ingredient to creating institutional change. you can find out if there’s anything happening in your area by checking this page. i think each region has chosen only one of these two dates, so be sure to look closely for the exact time and day. it’s not a two-day event. for us new yorkers, the rally point is in new york city’s union square on friday, may 11th from 12-4. there’s a nice line up of speakers and some great resources and information available. 

*this protest is how i found my new lyme literate rheumatologist. hell to the yes. there IS such a clinician and, as it turns out, she was also the president of ilads at one time or another. finally, a new strand of hope to light my dreary day.

one of the questions i’ve had from the start of all of this, since i saw the film, under our skin, was how i could discern which symptoms were from lyme and co-infections and what ailments were the result of lupus, scleroderma or any of the other autoimmune disease diagnoses that i’ve accumulated over the years. my initial hope was, of course, that i didn’t actually have any autoimmune disorders and that the great mimicker was to blame. given my family history, that’s likely not the case (did you know that japanese have perhaps the highest rate of autoimmune disease per capita? i am genetically wired for diseases and laughing at people getting hurt). as i’ve been moving through this process, i’ve often wondered how we’ll know when we’re really done. when do we stop treating the lyme and co-infections? where does one thing end and another begin? if only there was a definitive test for tick-borne diseases… sigh. 

i have an incredible rheumatologist who practices functional medicine, but she lives in iowa. though she has attended some seminars on lyme, she’s generally unfamiliar with the treatment protocols and it’s not like there’s one way to treat, one plan that everyone agrees works. the basis for functional medicine lies in examining the underlying causes of symptoms. emphasis is put on treating the patient by creating an individualized plan. there’s a lot of gravity given to the “right” diet and ensuring that your body is being supported in the best holistic ways. this means taking supplements, employing varied cleanses, modifying and changing eating and sleeping habits. antibiotics and other western pharmaceuticals are used sparingly. given these factors, distance and differing approaches, i haven’t actually been able to use her as a resource. i have personally found that most medical practitioners either don’t believe in chronic lyme or are scared of potential and severe repercussions from diagnosing and treating lyme patients. i haven’t been able to get anything out of the appointments with my other doctors because they don’t understand the intense iv antibiotic and integrative treatments i’ve been undergoing. that might be a bit of an overstatement. i haven’t even bothered to schedule any appointments with doctors other than dr. j. i did try to see a highly recommended internist who thought i was crazy for believing in the existence  of chronic lyme disease. i left there furious. sometimes i feel like i’m not above punching somebody in the nuts. he was a great candidate.

switching gears here…

though i doubt that anyone other than my partner really sees it, i’ve been massively depressed. what great actors chronic lyme patients become. my partner’s birthday is in two days, mine is the day after and five days after that, i’ll celebrate six years of being clean and sober. the first week of may has a lot of really big deal events (happy birthday to ALL my taurean friends!) and instead of being excited, i’ve been dreading that week for awhile. it’s not that i mind getting older. that seems like a complete waste of energy. unfortunately, for one reason or another, every year around my birthday, i slump my way into a giant hole. when i wasn’t partnered with a person who had a back-to-back birth date, it didn’t matter much that i felt like eeyore every year on beltane. but when you’re a consistent, sad bastard on your boo’s birthday year after year it’s not so great. and that just seems to fuel the pathetic fire. my great depression of 2013 seems to have arrived a bit early. i’ve been weepy and overly sensitive, quiet when i’m angry and withdrawn when no one’s watching. i feel totally lonely, but don’t reach out to anyone. i want and need help taking care of the house, the animals, the boy with a broken ankle, but when help comes, i unintentionally rally, put on the show, and don’t ask for much. i did ask a friend to help me pick up two enormous tool chests from sears. he was kind enough to drive and help shoulder the beasts into my garage. a few friends have come up to cook dinner and hang out, which has been a nice distraction. but… the only people i feel like i can really mine for heavy assistance are my immediate family members, and at this point, i’ve really worn them down. i feel like a burden and to make everything harder, so does my partner. he’s horizontal, leg wedged up in the air and constantly apologizing. wet blanket meets wet blanket. i have been in dire need of a win.

switching to third gear…

while looking at the line up for the protest in nyc, i noticed that a rheumatologist/internist was a featured speaker. when i read that she was a former ilads president, i instantly googled her contact info, called her office and set up an appointment. oddly (which i say because she was the president of ilads), she has incredibly varied reviews from her patients. i tend to feel like the majority of reviews are made by unhappy customers, not the satisfied ones. i often think about writing rave reviews, but i must admit that the only ones i can actually remember posting we’re the ones where i was mad as hell (and i won’t take it anymore. apparently i’m experiencing a throwback monday. that movie came out in 1976). in any case, she actually accepts my insurance! i’m really, really excited for my upcoming appointment. i had long since given up the idea that i was ever going to find a rheumatologist who actually “gets it.” at some point i’ll get into the backstory because it’s quite significant in lyme disease’s big picture. we have rheumatologist, allen steere, at the heart of the problem, but this piece is already too long. how the field of rheumatology stunted and/or prevented comprehensive lyme disease research is fodder for another day. today, i’m grateful for the chance to meet with a new doctor who might be able to help me negotiate the intersections of my dis/eases.

come hell or high water, i’ll be in union square the friday after next. i might even geek out enough to wear a lime green dress that was once my favorite, albeit obnoxious, frock. that’s how far i’d go to bring even the slightest bit of attention to lyme disease awareness, education and treatments. i will break all my fashion rules and bust out clothing from the days when i tromped through life like a little japanese manga character. last fall, i promised to be at the ilads conference but failed to follow through on account of having sepsis. this spring, nothing is going to stand in my way. i have 10 days to come up with a clever sign. i don’t think that the “jesus had two dads and he turned out just fine,” sign in my garage is going to fit the bill.

*hi mom. i’m sorry i didn’t tell you first. i’m too crabby to talk on the phone. i’ll call you tomorrow. xo

coartem kibosh.

i was up at 6:30 am. actually, i woke up around 5:30 and shot an email off to my infusion nurse asking if i had to take my medications today. i’ll explain later. anyway, awake as i was, i forced myself back to bed. it was hardly light outside after all. i kept wondering how it was that for years and years, i took the morning shifts as a barista. after long nights of dancing at our st. paul lez bar and coming home to crank out a paper, i was slinging coffee at your local, smokey and sunny shop, stack of old new york times lining the back wall by the bathrooms. and i promise you that if you were one of my customers, i was never anything but nice to you. and much to the chagrin of my employers, odds are, you got lots of free stuff from me over the years.

this led me back on my path to remembering days that, even though i was sick, i was well enough to hold down jobs, be a full-time student (albeit one who was registered with student disability services or my lack of attendance alone would have knocked me out of the academic running) and take my swiss shepherd/golden rescue pup out for walks. again, i drove the truck back to the back of a parking lot in st. paul and let her run. eventually, i wasn’t able to give my dog the kind of life she deserved and she’s living out her days with my father as her leader. to her detriment (she had undetected lyme that gave her permanent arthritis, so she pays dearly for any real play time now), he takes her (and her sister) on long walks through the woods, on trips to the boundary waters and an assortment of outdoor activities that i am no longer capable of doing. i write this about my dog, the non-frenchie one, because it’s actually been so long that i don’t remember how it felt to run 6 miles a day or what it was like to just wake up and get out of bed because that’s what you’re supposed to do. you are supposed to get out of bed. those days, that life, they are so far away from me. and that’s okay. for the past three mornings, i’ve been out of bed before 8 am. this is insane for me. i generally wake up around 7 and then thrash around in bed until 9:30. i often return to bed somewhere between 11-2. the bed and me? we’re tight.

okay, so i’ll finally get to the meat of this post. for the first time (other than the time i was hospitalized mid-cycle for sepsis), i have decided to discontinue a cycle of my treatment. i’ve made it through most of it, having completed 2/3 of the plan. like i said, this first round of oral treatment is pretty much the same as the last iv treatments. pretty much… there was the entry where i realized i’d been in denial about what dr. j told me the next few months would look like (did i actually publish that one? i can’t remember). the sunday before i started orals: numero uno, i sat down and doled out my meds only to realize that the torture of the winter was to be the torture of the spring.

this is from a week ago and that IS a giant blister. i refer to this as toxic bloom. dr. j calls it plaque (with the dermatological definition, i assume, maybe in combination with the dental version that refers to biofilm).

that’s where the edge of my thoughts stopped. i couldn’t portion the entire 11 days of medications. i only made it through 1-7, which left out the coartem, a high powered anti-malarial. it even looks like a pill form of mepron/atovanqone. today should be the first of three days of 4 pills, twice a day. it should be, but it’s not going to be. for 16 months, i have put everything on the back burner for my treatments. my partner has been the most patient and loving, supportive and emotionally generous person throughout this entire thing. that is not to claim he’s been perfect or that our relationship has been unscathed by my commitment to working, no matter how hard, to getting well. i have had to put him second, sometimes third. he has prioritized work sometimes because he has to, because without his job, this whole world we’ve built crumbles. we have had to navigate life on life’s terms and right now, life’s terms blow.

yesterday morning, i drove us (horribly, i might add. i drove us on the biggest detour of four boroughs. hey built in navigation system- when i type in new york city, i mean, new york city, not staten island. and i’m not that dumb about new york geography. the navigation reroutes for accidents, traffic and construction, which ny has been inundated with of late) to the hospital where the bear had a ct scan and an appointment with his surgeon. we learned what we already suspected, plus some. kid needs at least one surgery with two separate operations and until they actually get him into surgery, they won’t know which operations are the best solutions. for two weeks after, he’ll be horizontal, in a cast and stinky. i’ll be taking care of him 24/7. then after two weeks, we return to have the cast off, get a boot and get through the next month of absolutely no weight on that foot. he cannot commute for three months. we have to find an apartment in the city and be able to afford both of our healthcare costs, animals, mortgage, bills, student loans, etc.  the beat goes on. there’s more to his story, but that’s not so relevant. right now, what i’m looking at is that i’m supposed to start this coartem (and all the anti-malarials are excruciating for me) and get the house cleaned and ready for someone who cannot really move, pack up the car and grab the dogs and head to brooklyn tomorrow and then take my bear to his surgeries, grab dogs from other boro and then come back home- all while still on treatment. at the very moment, having not taken that medication, my body feels like lead weights have been draped over my shoulders. i am blistered and peeling. my face is red and splotchy. i feel foggy and fairly confused and my anxiety levels are spiking like a lie detector needle. in one fall (literally, one short fall), i have gone from being the patient to being the complete caregiver.

for the first time, i can’t follow my medication schedule. i haven’t heard back from the clinic, which is a bit frustrating because i probably won’t hear back from them until after lunch and by then… well… it’s 10 am and after 4.5 hours of posing the questions, “do i have i take this medication?” and “if i don’t take it, is it going to have a severe negative impact on my progress?” i have already made my own choice. but i wish that i could make this choice with my healthcare provider… ack. i’m sorry this blog post has careened off of a cliff. i’m frustrated and toxic. my mind and body feel flooded with spirochete carcasses and i’m having trouble keeping my shit together.

maybe it’s time to do some breathing exercises. god, sometimes i wish i still smoked.

it’s not as bad as it looks.

as soon as i swallow these two pills left sitting in the dish i throw my handfuls of supplements and meds in, i’ll have tipped the scales into just over halfway through my first go with oral antibiotics. it’s actually not as bad as the iv version of this was, at least for me anyway. it’s pretty similar but it lacks that vicious edge that the iv had. i feel crappy. i look worse. and yet, maybe it’s because i have to and i have no choice in the matter, but i’m actively taking care of everyone in my household… kind of. my partner complained at some point in the last six days that he had not eaten a real meal at home in a long time, to which i threw a verbal fit. i went on-and-on about how just because he broke his ankle didn’t mean that i was suddenly cured. fueled by a long academic career, feminist rhetoric spewed out of my mouth at lightning speed. i was horrified and angry that this was all somehow my responsibility. mind you, i planned for not cooking elaborate meals. i bought us both enough healthy bits and pieces that we could patch together a respectable, balanced salad or snack. and to be fair, he has taken care of me for two years. it is my turn. i know it’s my turn. i don’t have an out and i don’t really want one. this is just hard.

our dog, minion, appears to be more resourceful than my boo. before 8:30 am today, in the span of time that it took me to leave the room and go grab a sweater from another room, he managed to pull my yogurt off the table.

breakfast thief/asshole

if his chin was tipped up, you’d see his coconut yogurt beard. we’re having some pack leader issues… i’m not being a very good one these days.

so back to the treatments…

this is an 11 day plan. the first half is the portion that opens the biofilm. the second half closes that back up and kills any spirochetes and other invaders that have been loosed into the bloodstream. the red welts turned liesons have started to blister in some places. when i went out of the house yesterday to get lab work and go to the post office (i would not have left the house if were up to me), strangers were exceedingly nice to me and no one looked me in the eye. i guess that’s how bad i looked. i do love my phlebotomists though. and as i was leaving the office, one of my favorites was walking toward the door. from forty feet away she waved a hand around her face and sternum and yelled to me, “oh no! what is going on here?” this is the same woman who once told me that i looked like a tomato.

i am through the first half and the skin eruptions (that terminology is gross. fyi) are starting to heal, not that the healing process is pretty. i wasn’t nearly as hypersomnolent as i have been in the past. that is to say that i wasn’t nearly as sleepy. though it was challenging, painful and maybe a little too much, i did manage to feed my dogs every meal, take them outside all day, every day, do dishes, keep the house somewhat tidy (i think i just lied to you and for that, i am sorry), pay bills, take out garbage, get the mail, go to the grocery store and, you know, do the very bare bones of keeping a household together. so that’s real improvement over the iv protocol. there was no way i was going to be able to do any of that stuff. the skin issues have been more intense, but every cycle for the past six months has brought worsened symptoms in that arena. showering is still torturous, but mostly after the fact. i have to be really careful to not spend a long time in there or i’ll trigger a herx.

i wish that i didn’t need to drive to the city tomorrow morning to take my bear to a hospital where we’ll get another ct scan for his ankle and talk to his surgeon about just how many surgeries it’s going to take to put him back together again. i wish he wasn’t suffering, in pain and tackling that beast of stir craziness. it took me years to perfect doing nothing. years! now i’m trying to pace myself back into keeping up with life. too late? it seems i already dove into that pond. what we know right now is that we’re looking at no less than three months of bedrest, crutching it, physical therapy and slow recovery. i don’t know those of you who have other to take care of do it. i tip my hat to you (and to all single parents everywhere).

i swallowed those pills awhile ago and i think i need to lie down now. hasta pronto.

you cannot tiptoe.

i heard him say it. i know i did. but i blocked out the part where dr. j said that the new oral antibiotic, antimicrobial and herbal treatments, the ones i’ll be on until july, that they were basically the same thing i have been doing for months. the big difference (remember i said i blocked this out, so this could be a loose interpretation of real events) is that i’m administering orally instead of intravenously. and that part does feel good because it feels like i am moving forward on the predicted trajectory. however, i hated the last iv antibiotic cocktail and as it slammed me time after time, i just moved, minute by minute, through it. it felt like i was being tortured and each time a new cycle began, my symptoms came on faster and harder. so that’s why i didn’t register what the goal of my new treatment plan was. yesterday, sitting at the coffee table with an already portioned pill box, i read the antibiotic schedule and wanted to let my legs crumble beneath me and from a heap on the floor, where i fantasy yell, “i’m a fucking shrub, alright?” it’s pretty much the same goal only with a few more medications and a couple of new supplements. so… more stuff. more.

i’ve been wrestling with neuropathic and central pain, skin that feels like a butcher has taken a scalpel to it, like i am being burned by tiny cigarettes only from the inside out. but this is normal, i guess. so, like with all the other things i’ve made a decision to endure, i choose to walk through this. there are only ten days left. what’s ten days out of a lifetime? it’s only something if you’re at the very last of your life. in that case, ten days might mean a lot. losing the picc line feels like it was the right thing to do. it’s actually hard to describe how it is exactly that you know when you’re ready to have it taken out, but you do. my dear friend, who had her picc placed just two weeks after i had my chest catheter installed, just made up her mind that it was time and within a day or two, her line was gone. up until then, we had been checking in regularly, discussing our aches, pains, struggles, improvements, ideas and dreams of swimming in the ocean somewhere. but when she wasn’t a bionic lyme warrior anymore, i couldn’t understand why she’d have her line taken out when she wasn’t feeling well yet.  i am not feeling well…

post-picc wrap up.

i am picc line/central venous catheter free and officially through the intravenous portion of my lyme and co-infections treatment. it’s a big deal.

piccless (and so, so tired).

i don’t know exactly where to start writing today. i slept like it was my job yesterday (only i put in tons of overtime), and i’m not sure that i’ve woken up from The Great Slumber yet. it feels like weeks have passed since i had my picc line removed, but it’s only been four days. i want to write about having giant, excited feelings about this enormous step forward in my treatment. i want to write those things, but i’m not feeling them yet.

last monday i went in to see dr. j. it had been a little over two months since i last left his office with a suitcase filled with expensive bags of antibiotics and a plethora of accoutrements. i endured two more rounds of the same course of treatments i’ve been doing since early fall of 2012. most patients only treat this particular cycle twice. with the sepsis setback i had in october, i’ve been on this regime for what felt like forever. despite the fact that we believed that this would be my final iv show, we’ve been hoping that for too long for me to count on it. so on the friday before my appointment, i asked the clinic to schedule a picc line removal at george washington hospital in d.c., the same place where i had my chest catheter put in last march. though i had once thought i would keep the line during the switchover from iv drugs to oral meds, after the dangerous “treatment” i received while literally dying from sepsis, i knew that i couldn’t bring myself to return to the horror hospital in my town. they set an 8am appointment with interventional radiology for the day after my meeting with dr. j.

life had been so busy that i didn’t really have the time or energy to fantasize about what life would be like post-picc, but i was still excited. in the weeks leading up to my appointment, i had hoped that a friend could film both my rendezvous with dr. j and, optimistically, the subsequent removal of my picc line. were i to have had a normal picc line, one of the infusion nurses at the clinic could have yanked my line out right then and there. however, i had a tunneled powerline, the same device i had in my chest last year. the cuffed picc line has a tubular bead that lives on the inside of your body to prevent the picc from being accidentally pulled out. it’s highly unusual for this type of line to be placed as a picc (a peripherally inserted central catheter). as the picc runs through a vein that’s much smaller than the artery the chest catheter runs through, it’s not really necessary to ensure that the line won’t be removed unintentionally. the risk that you might bleed out is low to nil, if even possible. i wanted to catch this whole process on film, but when my partner broke his ankle last week while on a photo shoot in florida, my plan fell apart. my mother, who had been in town to help take care of me through the last iv cycle, ended up staying for an extra week and she accompanied me to washington d.c..

it all happened so fast.

dr. j told my mom that i was “incredibly determined” and after a short pause she chirped, “oh i know! she’s always been determined.” this is one way to put it. i suppose, with all the desperate moments, the endless opportunities to give up, i have been determined. but it hasn’t felt like that. it’s felt necessary, like the only trail that could lead me out of the woods. it’s not the first time that i felt like my life depended on my commitment to staying a path less than easy. this is survival in all of its painful, raw beauty. when i tried to shake dr. j’s hand at the end of the appointment, he gave me a hug instead. as one of his harder cases, i know that my progress, my hopeful trajectory isn’t just my own victory. we share in this. i follow his instructions and when those work, i become living evidence that healing is possible, that treatment can and does work.

i woke up at 6am and sleepily waited for my room service breakfast. don’t ever write an amendment to the food-as-is on a piece of paper you hang on your door before 2am. instead of oat and brown sugar pancakes, i got regular pancakes with a bowl of raw oats and three blackberries on the side. whatever. i ate that shit and then skittered out of the hotel in a rush, worried i wouldn’t make my appointment on time. i didn’t, but it didn’t matter.

after registering, i was met by the same man that had escorted me to the prep area for interventional radiology a year ago. he remembered me! he cheerfully led me to i.r. where i discovered that just about everyone who had been there a year ago was on-shift. that continuity helped me to feel like this was really full circle. i had a different surgeon who didn’t let me keep my line after it was pulled. “it’s covered in blood,” he offered as an explanation, even though before the removal he had told me that i might be able to take it home. as if we didn’t know that a tube taken out of one of my veins was going to be bloody. a nurse stuck a bandaid on the site and they wheeled me back to the prep rooms (i bled through that immediately and needed a real fix. all roads lead to tegaderm).

that was it. we left the hospital, grabbed a coffee from whole foods and headed to the car. we did a quick supreme court drive-by to catch a glimpse of the throngs of people gathered as the court heard testimony about prop 8 and doma. had there been anywhere to park, we’d have done more than circle the block. i decided i deserved a reward and cruised m st to see if i could hunt down a leather jacket i’ve been searching for. no luck. by the time we left d.c. for brooklyn, it was almost rush hour. we didn’t make it to brooklyn until close to 9pm and by then, i’d gone at least 12 hours past when my last feeding should have been and i was hangry as hell. there’s an acronym, h.a.l.t., that stands for hungry, angry, lonely, tired… halt. get it? you’re supposed to stop and take care of each of these potential pitfalls before they happen. i laid no preventative measures and ended up feeling all four states. our dinner plans fell through, which should have been understandable considering how late we were, but i failed to gracefully understand that. i guess what i hadn’t asked for or told anyone was that i wanted a celebration to mark this huge event. i’d been waiting for a year, longer actually, for the day that i would graduate from intravenous treatment. i wanted a surprise party. i wanted a toast. i wanted something more than what i got, but i never even hinted that i wanted any of those things.

i headed home before midnight with my mom, partner and dogs, sad and furious, starving and exhausted, massively disappointed that the line had come and gone with no pomp and circumstance. for at least half the drive, i clutched the wheel with one hand and shielded my face so no one would see the tears trickling down my face. i pretended that my family didn’t know i was crying.

at 1:45 am, i tromped through my front door flinging suitcases and haphazardly packed bags. i pouted until i felt ready to talk. my partner was barely awake as i confessed that i was upset that this didn’t feel like a bigger deal. i hypothesized that it would sink in, that after my first real shower, one that didn’t require press’n'seal or painter’s tape (thanks for that tip, btw!), maybe it would all sink in. since the “big day,” i’ve been alternating between massive physical exertion and profound exhaustion. overnight, i became the household caregiver, having to manage my own health needs with my partner’s inability to do much on his own. is it good timing that he broke his ankle at the same time that i was freed from my picc line? glass half full?

today i woke up like a normal person, with energy and intentions for the day. i did more before noon than i’ve often completed in a couple days’ time and even though i didn’t get the reception into post-bionic living that i wanted, i’m appreciating this new era. really, all the reward i need is knowing that this long, painful and tedious part of my recovery is over. the fact that i woke up today, did laundry, cleaned up, walked the dogs and rocked sunday morning like a healthy person is the big deal i was hoping for. the mythical leather jacket i’ve been hunting for might be my materialistic end-game prize. for now, i have everything i need. didn’t i say that a couple of weeks ago? maybe the repetition reinforces my gratitude. today, i’m not hungry. i’m not tired or lonely and i’m certainly not angry. upward and onward. there’s still a long road ahead.

are we there yet?

there’s so much happening that i don’t even know what to write. in keeping with the spirit of what seems to be commonplace these days, i have just closed four other blog entry attempts. i’ve been trying to write one everyday and have failed to finish any of them. i’m also pretty sure that a six-year-old has come in and hijacked my writing skills.

next up, a rant about clifford the big, red dog.

i’m in washington d.c., sitting on a very comfortable hotel bed, drinking courtesy, plasticized coffee and pushing back all the thoughts about everything i really should do before my doctor’s appointment this afternoon. this is a big appointment. after 12+ months of having either a chest catheter or a picc line, if everything proceeds according to plan, dr. j will approve the removal of my line and i will have completed the intravenous roller coaster i’ve been riding. i want to be able to say that i’m prepared for him to also tell me that i’m not finished, that i still need a couple more rounds of iv antibiotics until the infections have been decimated, rendering them critically vulnerable to oral antibiotic and herbal remedies. in spite of the myriad of times i’ve told myself that this is a distinct possibility, that i’ll leave d.c. with a picc in my arm and a suitcase filled with iv meds and supplies, i haven’t really accepted it. i suspect a level of devastation if that scenario unfolds. so… i’m going to keep believing the master plan.

if all goes according to plan, tomorrow morning at 8 am, i’ll have already checked-in at george washington hospital and by 8:30 will no longer be a bionic lyme patient. kinda hard to imagine.

life has hurtled a giant monkey wrench into my partner and my plans. a few days ago, while directing a photo shoot in a swamp in southern florida, my partner broke his ankle. poor guy. after sitting under a poncho in the rain for a few hours while the photographer and model finished up, he had to crawl on his hands and knees to get out of the swamp and back to the car (no, really. he actually crawled out of a swamp). fast forward through his pain, hospital visit and subsequent return to new york. because of everything i already had scheduled, i haven’t been able to even see him since his accident. and i feel terrible about it. he’s been here with me for this entire journey, for the endless months of treatments, the years of emergencies and incapacitation. he’s showed up for me and in this moment, i’m not able to show up for him. i’m feeling like a jerk.

we’re lucky. we know that. we have mothers who are more than happy to fly out and care for us (mine is here now. his will be here next week), but it’s still a tough situation. neither of us are in any shape to really tackle the ordinary daily tasks and handing them over to someone else feels like failure- two grown ass people who need a parent to come play nurse. i’m gearing up to pick up the slack, force myself out of the house and to the grocery store and keep some semblance of order to our already messy house. i’m hoping that next week won’t be another hooked up to an iv pole.

accepting help is a beautiful and painful experience. though i know that i could not have done any of this alone, owning up to being a moving piece in an intricate set of interdependent relationships is teaching me about giving. it’s not enough for me to simply offer my assistance to others. the real lesson, for me, is not in giving, but in receiving. i have been blessed with support from my family, my friends, acquaintances  and complete strangers. i have tried to keep my heart open, to find a comfortable balance between my desire to be self-sufficient and my need for helping hands and hearts. today i’ve made a promise to myself to move through this new phase of my lyme and co-infection treatments with a grateful spirit. in the interim (the time before i change out of my pajamas and put on my outside world armor), i need to fill out some medical forms.

maybe we can go swimming together. it’s been a long time since i could throw myself in the ocean. maybe you should join me in celebration on a tropical beach and we’ll jump waves and lie in the sun with our salty, warm skin, free of tubes and tegaderm.

catch you on the flip side!

phase ii, same as the first but a little bit louder and a little bit worse.

phase one consisted of me not leaving the house. this was not because i didn’t have places to be or things to do, but because i was not conscious for most of the time. i wrote how i felt having that first dose of meropenem coursing through my veins- painful, burning, instantly appearing as welts on my skin. well, that’s how the next few days passed. the welts turned sores turned lesions just get brighter and peelier as the days pass. after a few weeks, the redness has mostly faded and they appear as birthmarks. when those finally begin to fade, i apparently start the whole thing over again, so i can’t tell you how that part of the story ends.

oh, and i still have that crappy cold. it’s moved over to my lungs for the most part. i have always felt it was unfair that those of us with chronic diseases and pathetic immune systems are perfect, helpless prey for every pathogen out there. i don’t think a lot about what’s fair and what isn’t, but i’ve though a lot about this one. this has felt particularly unfair this time. i think it’s time to switch dealers because i’m clearly not lucky on this table.

the transition to phase ii was no peaceful switch over. it was one day of… well, a glimpse into the far off future of needing adult underwear, and not the crotchless, edible kind. i ate probiotics like tic-tacs, to no avail. it would have been horribly embarrassing, had i had any shame left. i woke up yesterday morning with a headache that, reasonably, only a long night of drinking and ingesting anything in the form of a line could have brought on. i include rat poison in this picture. the day just seemed to get worse, except that i was sleeping for most of it. my waking moments were nursing home horror show moments.

so there was that.

and i wouldn’t write about it, but i imagine that this is an unfortunately common experience. hey self, you are not the only one doing a load of wash this morning. at least you’re probably not.

filter. where is my filter?

today, my hair, stringy and limp, evidence of the constant writhing and night sweats, i just want to sit on the couch and watch louis c.k. in peace. i want to lay around wearing my horrible skin, with my painful lesions and my scalded face and not have to see anyone. i want to not change my dressing, which is completely peeled up around the edges (though still intact around the biopatch and statlock). i want to not force my sensitive skin into the shower so i can wash said stringy hair. i want to not have to see a mirror for days. i want a cave, with a comfy couch and limitless tv and movies.

i don’t get what i want. that’s how this story ends.

i ate a banana and now i’m listening to my stomach throw a raucous party. i won’t tell you how that story ends (see what i did there? you thought of it anyway. i’m so clever… and not ashamed. at all. i mean, none of this is terribly embarrassing. this is totally within the parameters of shameless. totally…).

i’m not fit for public consumption. i’m really not. and this is probably unpublishable.

whatever, i make a million mistakes. i’ll allow this to go ahead and be one.

meep.

oh good lord, this is so awful…

often i think i’m being melodramatic when i look back at the real in-the-moment writing of my treatments. ha! i undersell this. i undersell like it’s hot off the back of a truck and headed for one of those shops with the brighter than bright florescent lights and neon stickers spattered across every glass surface swearing a “going out of business” sale. i price it like i got it for free. i don’t know… maybe i think that i’ll scare off prospective patients. maybe i’ll scare off myself. but honestly, right now, what i wouldn’t give to just unzip my skin and step out of it.

within ten minutes of beginning my first iv bag of merrem, every single faded red spot heard a new call to action and sprung forth. recruiters, the lot of them. it’s as if i’m inside one of those plexiglass pin games, the ones you’d smush your hand into and see the impression of the flat top of hundred of metal pins. yeah, i’m standing in the center of one of those, a 360 degree chamber, chin tipped as high as i can angle it, like if i stand on my tiptoes or hold my breath, maybe i won’t feel the burning of a thousand needles. it feels like there’s no way out of this torture device, it is, after all, my flesh. my thoughts swing wildly between choosing to ignore this pain (totally impossible) and throwing myself to the floor, using the rug as a back scratch pad and my fingers as the diffusers of these tiny bombs (resulting in worse pain). i want to scratch my skin off, leave the muscles and fat to decorate my bones, letting my mind escape from the first installment of 16 bags of this medication, 4 of another and 4 of another. this is not the first time i’ve wanted a way out.

ignore that. it wasn’t meant to read the way it might sound. i’m not actually looking for an escape hatch. there’s not one. or, there are many, but as i continue to reiterate, the only viable choice is to keep stepping up, through, forward. anything else is self-sabotage.

okay, last complaint of the day:

i can’t begin to describe how impossibly torturous this feels. and though words escape me, i don’t wish you knew. that’s how bad it is. it’s not even like the disgusting slice/smear of raclette (cheese) that’s gone off (i imagine this must be among the worst smells of all time), the one you were considering spreading on a cracker to eat before you opened that glass container it lives in inside your fridge. you hold it out to your cohort and say something like, “oh my god. this is horrifying. smell it!” i wouldn’t do that to you, not with this.

me and my reverse hellraiser, the masochistic pinhead whose spikes turn in instead of out, we’re gonna whimper off onto the opposite end of the couch and whine to the dogs about how shitty this feels. immediately after, we’ll pray for sleep because dreams might be the only way to escape this feeling.

if only i could remember how to turn off that “anchored in the present” button, i could let myself loose into a blissful disassociation.

speaking of blissful, a few minutes ago i fired up the record player and listened to “duet,” by rachael yamagata, a wish-she-was-my-sister-but-i’d-settle-just-for-friends singer songwriter. it was everything i’d hoped for in terms of high-fi, granular, raw, indiefolkpoprock music. for four minutes i forgot where i was. maybe if i can get myself together later today, i can start to clean the box of records i brought back from my parents’ house. you know, i discovered that someone stole all the beatles and stones 45s (as well as some others)? it was heartbreaking, a state i didn’t expect to be alone in. but while i saw those records as valuable, as something i would someday ask my parents for, as just one more beloved reason i didn’t think i was like my schoolmates (wishing i’d have been born in time to puff away the summer of love), they were the cassette tapes and cds of my parents memory. “really? that’s awful,” my mother said when i told her the records were missing. “huh,” my dad said. i mean, they had somewhat more significant reactions later, but while i was pouting at the dinner table after finding some of my favorite memories hauled off in secret by the flood clean-up crew of our 1995 summer disaster, i heard my father say to my mother, “what’s her problem?”

“she’s really upset that those records are gone.”

then i tuned them out and began hunting for replacements on ebay. after impulsively bidding on a few ebay auctions ending in less than 60 seconds, i came to my senses. i’ve waited decades for these. i can spend my time getting them back. impatience is one of my strong suits, which makes the opposite something i strive for.

blarg! pain!

all i need.

in what’s proving to be less challenging than i expected, i am staying anchored in today, not thinking much about what’s going to happen on monday when i start (my last?) round of iv treatments. being present has never been my strong suit. the fortress of my mind, the one i’ve been fortifying since whatever life’s first big disappointment was, is beginning to let down its defenses. i have been reminded that when i feel fear, i need to walk into it (sure, this only applies to a particular portion of the spectrum of my fears. i leave the healthy ones be. i’m not going to intentionally stare down the barrel of a gun). no matter how scared i might be about what lies ahead, i know i need to stay center path. sure footing is never a guarantee, but it helps.

this is the longest break i’ve had since i began intravenous treatments over a year ago. by the time i finish my first infusion, an entire month will have passed since my last treatment. i don’t think i was supposed to let this long pass between them, but i put my life on the front burner (and i also had a couple of really severe viral infections, i.e. the same colds everyone has been coming down with). i went to visit a friend and her six-month-old daughter in canada. life with a baby in the house isn’t restful, but it felt really good to be able to finally be there. the last time we saw each other, she was just starting to tell people about her pregnancy and i was throwing a party for us before i embarked on the iv delivery portion of my medical journey. a lot can happen in a year. a lot has happened in a year. and even though i imagined i would be farther along in this process than i actually am, i have soared to such heights that the struggle already feels worth it. through years of illness, i developed a perspective where i tried to eliminate the emphasis on a particular outcome, much like one might enact in the bedroom. i was on a decade long losing-streak and i was tired of always trying to find the win. i don’t know when or how i’ll reach the end of my tick-borne disease treatments, but if i can continue to heal at this rate, i can make a life that doesn’t just resemble one i want, it will be one of the versions of what i want. it’s hard to remember that this is even possible when you’re mired in the tedium of an endless stream of painful days. still, it’s not easy to forget that you’re working toward a holistic wellness when you’re suffering as much as i have this year. i’m shifting my perspective. i have an end goal.

my muzzled cynicism rides shotgun, but the nuances of the day to day, of my memories are finally making it back onto the page. i am seeing poetry in the world again. i’ve started to write more than just this blog and it feels so much less forced than it did. it’s not just the beauty of language i’m reacquainting with. i am remembering to breathe (and for those of you who have the more than occasional bout of air hunger, the inability for the brain to feel like you’re getting enough oxygen, you might know what i mean). i am breathing my way back into a state of awareness that i haven’t been able to access for years.

the day after tomorrow, i’ll wake up and connect my picc line to tubes that pump in antibiotics strong enough to warrant a hazmat suit. all the faded sores will spring back to life. new ones will bloom out. i’ll sleep for the first half of the next week and weakly complain for the following five days. my skin will hurt. my apetite will suffer. my mind will play tricks on me. i will feel as if i am the only person in the world who can see me. my physical body will be crushed and my optimism will wane. and then all of that will slowly change as the drugs are slowly flushed out. the heavy job of toxin clean-up will begin and i will feel as if i am climbing up a sand dune. the very idea of taking a shower will keep me on the couch, wrapped up in a blanket in an act of hygienic defiance. i will turn silk clothing inside out so that the seams won’t irritate my skin. that’s where i’ll be soon. it will take time for me to get back to the kind of place i’m in right now. but right now, i’m sitting in a silk robe on a soft bed at a castle/mansion in the catskill mountains, waiting to head to the spa for a massage. my partner is reading a book beside me. out the window, the sun is shining over a frozen lake, glimmering off untouched snow. when the sun sets, we’ll light a fire and enjoy exactly where we are. it might get better than this, but right now, i don’t care. this is all i need.

in the middle of the night.

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!