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.

April 23, 2013

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. 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).

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.

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.

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.

April 15, 2013

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…