last october, i made the decision to attend the ILADS conference in toronto. the registration form made it pretty clear that the conference was geared towards ilads members, doctors, medical practitioners, researchers and other professionals who were working in one form or another with lyme disease. the conference fees were arranged in such a way that i ended up paying as a “non-member, non-physician,” which is the most expensive way to go. in no way did i feel like there was an unspoken deterrent for patients to attend, i was just not the target attendee. i decided to go anyway.

scouring the web for information on lyme disease and co-infections, i was having abundant troubles finding sources that i felt certain were credible. i questioned the validity of most of the articles and research papers i read. there were a few doctors whose work i felt fairly confident in, but i floundered with the majority of readily available information. at this point in my diagnosis, i devoted most of my time to learning about lyme disease with the hope that the more i learned, the more equipped i would be to create an effective strategy to beat lyme and babesiosis. at the time, i didn’t know enough of bartonella symptoms to be able to recognize that i was also infected with that. but no matter how much information i tried to take in, i felt like i didn’t know enough. i felt like i was battling an invisible opponent and i obviously didn’t have the upper hand.

i went to the ilads conference feeling confident that i was going to be able to extract at least some concrete evidence that would help me get better. the presenters and speakers were names i had come to recognize from my research. i studied the conference schedule, trying to figure out how i was going to make it to all of the lectures that i was interested in. there was really no way to do that, with multiple presentations slotted for every hour of the weekend. so i starred the ones i knew i shouldn’t miss and made an optimistic calendar of all of the lectures i wanted to attend. i felt a bit nervous about going. i was worried that my brain would be in a lyme fog and i wouldn’t be able to absorb any information. i had concerns about sitting still for two-and-a-half days. fortuitously, the dates of the conference corresponded with the general time that i had planned on visiting a good friend in toronto. even if i was too sick to really be present at the ilads conference, i still had a great reason to be in canada.

i have to say that going to the ilads conference made an immeasurable impact on my health. in all my years of enduring illnesses, this was the most empowering thing i had ever done to really take control of the direction of my health care. though i knew that no one else was going to effectively manage my autoimmune and tick-borne diseases, i had just thrown myself to the wolves and hoped for the best. i had a good llmd (lyme literate medical doctor) but i also owed that to the person at ilads who put me in contact with her. my lyme doctor was also in attendance, which was great because i was able to check-in with her periodically. she helped me to filter through the stack of new information we were both gathering.

i wasn’t able to interact with other conference attendees on a meaningful level. i just didn’t have the energy to use any of my social skills. the best i could do was sit with my laptop and take the most detailed notes i could manage. i was typing frantically most of the time, only to realize later that the majority of what i wrote down was actually in the disc of powerpoint presentations provided with all of the other conference materials. i have a mac air and didn’t have my disc drive with me… but it was really useful for me to listen as closely as i did and to create my own notes on this incredible research that was all new to me. there were so many small moments, clinical evidence presented as side notes, that transformed my understanding of how these diseases really affected my body and my mind. i made connections between my current symptoms and my history of unexplained medical problems. for the first time in a long, long time, i didn’t feel like i was crazy or alone in what i was going through. there was medical proof that my experiences were real. at that time, i needed that more than anything.

at the end of each set of presentations, there was a question and answer session. i used every single one of these opportunities to ask questions that i had put in my notes. when the moderator chose which slips of paper to ask the panel, my questions were always selected. i felt that the fact that my inquiries were chosen demonstrated that the concerns of a patient, an infected layperson, were often somewhere in the margins, left out of the primary discourse. i was asking for different answers than a clinician would be and i was also asking for different reasons. what i sought was, what i think most of us suffering from these diseases want to know, how can we apply these treatments in a realistic, practical and effective way? what methods can we employ that are going to help us get well?

not only did i leave the conference feeling like i had a much better handle on what was going on in my body, i finally felt like i had agency and the ability to navigate my healthcare. this alone was priceless, but i also was blessed to be able to connect with my current lyme doctor. the work that he is doing, in my opinion, is revolutionary. he’s a visionary and he is developing treatment methods that actually work.

i’m registered to attend this year’s ILADS conference (november 2-4) in boston. attendance for a non-member, non-physician is $520, if you register before october 10th. like everything, the cost is prohibitive for a lot of people, but if you have the means to attend and you’ve never been before, i can’t stress enough how powerful this was on my path to wellness. being well-informed is the greatest tool we can use to fight these diseases and the ilads conference is an amazing way to access reliable information, especially in just 2.5 days. if you’re not able to go in person, you can see videos of some of the presentations. it might not be the same as being there in the real, but the information is the same.

hopefully, i’ll see some of you there. i’ll be the freckled little, dark-haired girl typing like a maniac somewhere in the back of the room.

Advertisements

home after the holiday.

September 19, 2012

a whole week without a post? i just started to write about all my cheerful “holiday” posts, but i just went back and looked at the last few and discovered i didn’t actually type them out. i did draw up drafts in my head. in spite of my newfound wellness, i guess i wrote, like, one “i felt great!” entry and the rest were all of the “this kinda sucks!” variety. the absence of documenting good experiences actually misrepresents my break. for the first two weeks (count ’em up! 14 whole days without tick-borne disease meds!), i felt pretty amazing.

like most things in life, most of the events of those days were beyond my control. my partner’s parents visited the first week and we went back and forth from our hudson valley retreat to the city. travel, even if it’s 60 miles, takes a toll on me. some of that is psychological. it’s not like i can travel light. if i forget enough flushes, if i don’t have an extra dressing change, if any of my meds are missing, i’m in trouble. the fact that i want to look 100% put together when i leave the house (c’mon now. i’ve been in pajamas since march), doesn’t help the process. i’m quite short, but i’ve been compensating for that with gigantic heels since high school. my feet are too swollen to withstand most of my choice shoe picks. i fret over my outfits and looking like a munchkin. that takes time and negotiation. on top of that, i’m not just packing for me. i also bring my two dogs with and i have to cat-proof the house. my elderly cat protests my absence by urinating on things. rubber sheets all around! good times. so… i agonize over packing. it’s hard for me to leave the house in general, but leaving for an overnight or more is really challenging. i blame my mom. she’s a stress packer, who repacks her suitcase at least four times before leaving. granted, she’s usually bringing clothes, toys and medical supplies to guatemala and has to fit everything in under 50lbs, but still. i learned it from watching her.

during those past two weeks, i crammed in everything i could. due to my illnesses, i haven’t been able to show up for my friends for a long time. after months of isolation, i desperately needed to recharge and spend quality time with some of the people i love. it was amazing to be able to make a plan and keep it. amazing. for the most part, i wasn’t suffering through dinners and intense reunions. i was present. i was happy. i felt good.

after the 14 day mark, i still had 3-4 days off. i ran out of “immune capital.” i had also started menstruating, and experienced incredible pain from my waist to my toes for the first 48 hours. reportedly, due to hormonal cycling, the spirochetes can sync with menses. the life cycle of borrelia burgdorferi is about 4 weeks and while my immune resistance is lowered, it’s a perfect opportunity for a spirochete party.

my body gave up. i held off on starting back up my latest treatment schedule for an extra day. this was, in part, because my pharmacy promised that my new medications would be ready and they weren’t, but also because i was struggling and sick. i was having fevers, feeling cold when my body wasn’t actually cold, getting anxious for no apparent reason and dealing with intensely painful myalgias. my insomnia ballooned, and though i only have anecdotal evidence to back my theory, i believe that all these bugs are more active at night. i have read babesia microti can be to blame for prolonged insomnia, though i’m not sure how credible these “reports” were. i’ve heard from my friends (who share my co-infections) that they experience similar flares of sleepless nights. for the last week i’ve been right there- tossing, turning and bothering my partner in the middle of the night.

i’m always hesitant to go into a new round when i’m feeling physically torn apart. after having so much time as a healthier human being, my mind tries to trick me into weaseling out. yesterday, i initiated my latest biofilm annihilation protocols. unsurprisingly, it was painful. the torrential downpours and barometric pressure didn’t help my state. i slept through the majority of the afternoon and complained incessantly when i was awake. by midnight, i was starting to feel better. i actually slept through the night and didn’t wake up until 11am. today isn’t the easiest day. my body is sore and i’m exhausted. i have the day off from antibiotics but i feel like i need to keep sleeping. any plans to leave the house have been abandoned. i feel drained of all energy. my heavy eyelids keep pulling me towards a nap and i’m periodically shaking my head to stave off sleep. i’m going to go ahead and listen to my body and get my little butt to bed.

overview of this post: holidays are great, tick-borne diseases can make menstruation suck and can amp up insomnia, and i’m starting to listen to my body’s needs. nap time!

up and up.

September 11, 2012

i’ve been on this amtrak train for about 40 minutes and only just now have i caught my breath, stopped wheezing, coughing and clutching my chest. my appointment with dr. j lasted a little longer than i had anticipated, which was a bit silly of me because at this point in my treatment, i know that everything always runs over. in order to make my train, i had to race to a cab with two rolling suitcases stuffed to the brim with iv medications, iv tubing and other supplies, plus all the other items i had to bring with for my appointment and an overnight stay. i had five minutes to get from where the cab dropped me off to race through union station, find my track, rummage through my purse to get my ticket out, get down an escalator and clamber onto the train. gasp. i made it. barely.

for years i’ve attempted to speed through airports to make connecting flights, to push through scores of new yorkers on crowded sidewalks and subways to get to doctor’s appointments, and to barrel my way through whatever situation to get to wherever it is i need to be on-time. this exertion has always led to medical episodes, like seizures or dizziness. on rare occasions, i’ve even passed out. today, on my twelfth day off of lyme drugs, not only did i make the nearly impossible trek, but i made it in one piece. my endurance is pretty pathetic, so my chest still hurts at bit and my muscles are letting me know i pushed too hard, but i’m sitting in this air conditioned car intact. maybe it’s not a miracle, but it feels like one.

at dr. j’s office, every staff member i saw, including the doctor himself, said that i looked the best they’d ever seen me. after a physical exam, dr. j told me that everything had improved. from my grip to my ability to flex my feet, my body has begun to ascend to a healthier, more functional state. the best part is that i can tell. i feel stronger. i feel better. i’m seeing real results with my treatment program. it’s amazing.

coming off of two brutal weeks of iv and oral medications, this last holiday week was the closest thing to normal living (whatever that really means) that i’ve experienced since i was a teenager. every single day of my holiday has been packed. i kept pace with healthy people. i kept all of my plans. i ate delicious foods as if i’d been starved for months. i LOVE food. not having an appetite, not being able to tolerate full meals, drinking lots of vegetable juice and noshing on fruit has been a sad aspect of my 2012. this past week i ate anything and everything in sight, completely ignoring all of my food sensitivities and breaking all my dietary rules. i ate bread. i ate cheese. i ate. i ate. i ate. and though i didn’t always feel amazing afterwards, it was totally worth it.

i’ve been pushing myself really hard. on friday and saturday, i walked for miles with my partner and his mom. i expected to have sore muscles and be exhausted on sunday. expectations are a dangerous thing… at about 3am on sunday morning, i woke myself up from a partial dream state in which i was writhing and crying. awake, i tried to get out of bed to get medications to treat the incredible myalgias (muscle pains) and joint pain, but i couldn’t get my legs to swing over the side of the bed and i started having a variety of seizures. my partner woke up and quickly went to work. he fed me the meds i needed. i talked him through how to hook up a lactated ringer and after i fumbled through the necessary prep work to hook myself up to an iv, we got fluids going. my temperature was 102.5, which needed to come down. the lactated ringer’s solution helps cool the body almost immediately. once the hardest parts of the crisis had passed, in spite of the sedatives i’d taken, i felt wired. i relocated to the couch, anything and everything i might need within reach, and i tried to draw. ha! i may have invented a new form of scribbling. my drawings looked like a four-year-old imitating edward gorey. by 7am i was tired enough to head back to bed. i spent most of sunday sleeping, waking in pain and falling asleep again. so… i totally overdid it and i paid the price for that. in truth, it was absolutely worth it (as far as i’m concerned, but i don’t think my medical staff is in agreement with me). for one week i had the chance to feel normal(ish). i don’t have the slightest idea of the last time that i was able to keep back-to-back plans. it feels unreal and amazing. oh, to be able to see the payoff!

move your body?

September 5, 2012

i’m on a break, one that’s overflowing with plans and things to catch up on, friends i’ve neglected, reunions with people i haven’t seen in years, a broadway show (the book of mormon) and scouring the northeast for interesting antiques. after all, it is brimfield this week. unfortunately, antiques are always overpriced out here. for the record, items from the 1980s and 90s are not vintage (or am i just getting old?). when i see stuff my family used to own, that wasn’t that great to begin with, with a $400 price tag on it, a part of me wants to “accidently” knock it to the ground and then act surprised at the broken shards scattered at my feet. i wonder if that’s how my grandparents, who were collectors and antique dealers, felt when they saw their childhood toys displayed as “antiques.” subsequently, i only know how to haggle when it comes to buying old shit, a skill i wish i had when it came to buying clothes i should not even try to afford. there’s something about having spent nine months with unwashed hair and stubbly pits, clad in pajamas worn three days in a row, that has prompted me to sporadically buy extravagantly nice threads. not only do i not have a place to wear them to right now, but i tend to shy away from events where such clothes would be appropriate. if i had the patience, i’d be cashing in on ebay listings. you don’t need or want to know any of this, do you? it’s raining. i’m rambling and i’ll stop now.

i’ve been off the no holds barred drugs for almost a week and aside from some focal seizures, central pain issues and a bit of anxiety and paranoia, i’ve been feeling good. aches and pains, yes, but my health has felt generally manageable. it’s a welcome relief after the previous two weeks of complete misery.

one of the difficulties of being on a drug holiday is that i don’t quite know what my body is capable of. i want to get out there, be active, interact with human beings (instead of dogs and a cat) and experience a semblance of a normal life, but i haven’t a clue where to draw lines. after two days of being with my partner’s parents (it’s great to see them. i’m not complaining about them), i was so overwhelmed that i passive aggressively sent angry texts to my dude for drinking an espresso i asked him to hold for me. we were in the car with his folks and i didn’t want my petulance to have an audible voice, so i harassed him via phone. my annoyance at not having caffeine, which i was calling inconsideration on his part, was really about the fact that i had overdone it and was completely exhausted. rather than listen to my body, i felt obligated to push through and keep pace with a group of healthy people. this behavior does me such a disservice. it wears me down and makes every waking moment more challenging. i ended up sleeping during the ride home, which is what i needed, not an americano.

i try to remind myself that i have no endurance, that 2012 has been the year of sedentary couching and that my untoned muscles don’t have the wherewithal to keep pace. my expectations are too high and my will too strong to be still enough to hear the soft call of what my body really needs. i’m not sure if i can or should start exercising, using the elliptical machine we bought this winter and building my strength back. i don’t know if this is the right time to do it. part of me doesn’t want to spend my holidays with sore muscles from intentional exertion and another part of me believes that this is exactly what i should be doing to help myself heal. there are so many pieces of the process of healing that i feel uncertain of. i don’t know if i’m doing too much or not enough.

years ago, during a hospital stay, i found a stairmaster. i hopped on and started pumping my legs up and down. within five minutes, my hands and feet were mottled blue and red. my entire body felt numb and i was dizzy. the hospital staff called in a doctor to check me out. i was told that this was too much for me, that i shouldn’t try to workout. i think that many years later, that experience is still dictating what i believe i’m capable of doing or what i should be doing. i need to clean the slate, start over and slowly experiment with exercising (other than yoga, which has helped me a lot). as i get healthier, as i continue to eradicate these tick-borne diseases, my needs are changing. figuring out how to keep up with those shifting conditions is a task i think i need to devote more time to. there’s no marathon in my future, but maybe i have room for ten gentle minutes on the elliptical.