i just hung up the phone after an hour + conversation with my mom. i feel like i should first express how much i hate being on the phone. i hates it. i hates it. i hates it. while i generally feel okay about calls after i’m on them or once i hang up and feel finally informed about how my sweet friends across the country are doing, i get a bit panicked knowing i have to make or receive a call. so there’s that (admittedly, i might have written in this part to give shape to why i dodge phone calls.). my mom is one of the few people i talk to on the regular, and really, i can’t evade her for very long before i give in and answer. this phone call began with talk of exactly which power tools a la christmas i was asking for. did i need an air compressor with accompanying tools? yes to a  finish nailer. no to a brad nailer. aren’t table saws pretty expensive? they can be but i’m not feeling too choosy about that tool. why do i need an impact driver and a hammer drill? at the end of the tool gift conversation, i don’t think we were much closer to what i’m going to end up with, but it’s always fun to talk new tools.

then she moved onto the subject of treatment logistics in january. the jemsek specialty clinic is located in washington d.c. and i live in the hudson valley in new york. it’s about a 5-hour drive in a good traffic flow, pretty far to commute when you’re feeling like shit.

where am i going to stay? i found fully furnished apartments that are $50/day $350/week that will let me have my dogs or my cat with me. they’re close(ish) to the jemsek clinic and have a parking garage.

can’t i stay with friends/should i really be alone? it’s so hard for me to be sick in front of other people. i’m like a wounded animal that wants to crawl back to the den to nurse its wounds. unless it’s my mom, dad or partner, i expend too much energy trying to keep whomever is in my company at ease about how i’m doing, that it’s detrimental to me.

what if you really need help? then i will ask for it. one of my best friends lives in d.c., but with a brand new baby, i have no intention of leaning too heavily on her (are you reading this? i promise to ask for help when i need it, but i will not burden you! i love you guys too much to take any part of your time at home with the baby. <3). i work at a women’s music festival every summer and have an incredible network of strong women whom i can ask to give me a hand. it’s really difficult for me to ask for help, but i know i might need to do that and i will if i have to. my partner will come down on weekends and support me to the best of his ability, but he has to keep working. we can’t both put our lives on hold. my mom is planning on being with me as much as she can. and some of this i feel i need to do on my own.

are these treatments really necessary? yes. i believe that a combination of oral and iv antibiotics is the only chance i have at killing off these spirochetes, lyme cysts and biofilm. the more i heard at the ilads conference, the clearer that became. oral antibiotics will not effectively destroy the cysts or the biofilm. also, i don’t yet know what exactly this is going to look like. i’ll find that out at my consultation in january. on my own, i’m projecting like hell, thinking about all the possibilities of what course we’ll take, but in reality, i have no idea.

i’m worried about how dangerous this could be. i know. i am too. it seems that any symptoms i’ve experienced from my tick-borne illnesses could return during treatment. this means that i could have seizures, hallucinations, myalgia, joint pain, and anything else i’ve had. the herxheimer reaction is going to be significant. and painful. and potentially dangerous. but when i look at how significant, painful and dangerous my diseases are/have been, what’s the difference? at least this is suffering with a (potentially) positive outcome. that is/was pain for pain’s sake.

i’ve been feeling pretty fearful, but having to explain to someone else why i’m doing this and why i believe it will work has helped me to come down from the ledge. if worrying is a lack of faith, i don’t need to worry. i’ve got faith in spades.

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writers never die.

November 22, 2011

i’ve taken a physical break from the blog, but haven’t stopped thinking about writing. there’s always something to report, new developments and different treatments, but for the first time in a really long time, i’ve been quite busy with work! due to a new medication, i was able to work about 7 pretty decent days before my body crashed. and even though i’ve had to put in a lot more hours since starting to feel crappy, i haven’t picked myself back up yet. i need a solid week of couch time to recover but with countless hours of leaf blowing (we have 1.5 acres of woods and we’re surrounded by tidy suburbanite plots complete with lawn services), that isn’t going to happen right away. the new medication isn’t the miracle it seemed to be and my energy is starting to dwindle. actually, my energy is gone, but i’m still on the move. my new jet-pack leaf blower may not be enough to bridge the gap between the two feet of leaves covering our beautiful woods and my swollen joints and rigid muscles, but it’s better than a rake. i’ve been in this for enough years to know that once i push my body past the point of no return, the harder i’m going to fall and the longer it will take to recuperate. i’m pretty sure i have a grip on my current psychology. i’ll explain in a minute.

two weeks ago, long after the sun had slipped away, i got a phone call from a washington d.c. number. it was the day before one of my dearest friends was due to give birth and i excitedly picked up the call thinking it was going to be baby news. instead, it was dr. j‘s appointment secretary! she said that my lyme doc had called in a referral and that she was sorry to be calling so late, but she had to check with dr. j to see if he remembered me. he did recall our conversation at the ilads conference and he wanted to schedule an appointment with me. like most lyme doctors in it for the long haul, he does not take insurance and i had to put down a deposit of $500 for my consultation. i’ll pay the remaining $250, plus whatever costs associated with baseline testing when i’m at the appointment. any feelings i had about dropping the cash on this, i washed away with the not-so-reassuring thought that this is probably just a drop in the bucket for my total treatment cost. plus, if i look at all the years of copays, no-insurance-pays, medications, travel expenses- all in the name of misdiagnosis, it’s not really that much money. i’ve spent tens of thousands on medical expenses since i was 18. and i’m praying, with every fiber of my unitarian being, that this is the beginning of the end. i go to see him in mid-january and i’m chock-full of expectation- a somewhat dangerous place to be.

so back to the whole psychology thing. i’m anticipating some genuine suffering in my near future. knowing that i’m paying out-of-pocket for this treatment has sparked my deep-seeded fears of financial insecurity. when i begin treating the burgdorferi/babesiosis/bartonella (i wasn’t sure i really had the latter, but after seeing pictures of bartonella rashes, my lyme doc and i are fairly certain i do) with pulsed iv therapies, i’m going to be sick as hell. the only way my brain can get behind it is to convince itself that it’s only going to be that bad for a few months, but the reality is that it could last anywhere from 12 months to a few years. but i’m trying to stay present, to be right here, right now. in spite of tons of grounding meditation, i feel like one of these fat ass squirrels (no really, the ones in my yard- they’re huge) trying to gather everything i’ll need to get through the winter. i’m pushing myself harder than i know i should because i’m scared that come january, i won’t have the option of pushing through. it’s the chronically ill version of “sleep when you’re dead.” i’m afraid that whatever i don’t get done now, will stay unfinished/broken/dysfunctional until the summertime. that’s not really staying in the moment, is it?

(also, please don’t get it twisted. i’m so, so, so grateful for the chance to see this doctor.)

at some point in my early 20’s, long after i had become sick, been diagnosed, and undergone varied treatments with minimal success, i started to think it wasn’t going to be in my cards to give birth. i’m someone who has always wanted children, but not the kind of person who needed to have a biological kid (or so i thought). there was always some part of me that knew it might not be my path. and so i started coaching myself into the idea of adopting, but somewhere in the back of my heart, i kept this hope that i’d be able to do both- carry and adopt. a couple of years ago, one of my rheumatologists told me that i would not be able to get pregnant. he said that if i did get pregnant, because of my lupus anticoagulant, i would most likely suffer miscarriages. he also said “if you were to, oh, say, hit your head hard enough, you could have a brain bleed that could cause a stroke or cardiac arrest before anyone even suspected anything was wrong.” i left his office, collar pulled high against the cold wind, eyes lowered. “so what?” i thought. “this is what you always suspected. you always knew this might not be a possibility.” i felt like having feelings about my infertility was a ridiculous waste of energy, but that didn’t stop the feelings from coming anyway. i had one of those new york moments where i stood in a doorway on the upper east side, my umbrella cocked out into the rain and cried into my hands. no one gave me a second look as i stood on the corner of 76th and lexington sobbing in the november rain. in december of that year, i met with a high-risk obstetrician to discuss what my future as a mother might look like. “if i may be frank,” he said, “it won’t be the easiest thing for you. you’ll have a significant chance of fetal loss, particularly in the first trimester, but if you make it past the first few months, your odds improve.” he told me that indeed i could have children, that my rheumatologist was wrong, but that i needed to be in optimal health in order to foster ideal conditions for my pregnancy. i left that appointment feeling like having a biological child was possible. all i had to do was get stable for the first time in my life.

when i saw that dr. charles ray jones was giving a talk on “pregnancy and tick-borne diseases: gestational lyme” in the ILADS conference line-up, i made the decision to attend the conference. during my first appointment with my ILADS doctor this summer, i asked about pregnancy. “have you and your partner considered adoption?” she asked me. “i can’t say that i recommend you getting pregnant. you can certainly do it, but there are a lot of risks. it might be best to start an adoption process.” 31-years-old and in a loving partnership, my biological clock chiming hourly and with so many of my friends- straight and married, queer and single- bumping up the population, it’s hard to stay patient. my partner and i have had some intense talks about adoption, but at this point, we know that with the hardest parts of my treatment ahead of me, i probably can’t handle the stress of parenthood right now. the chance to listen to dr. jones break down the risks and realities of a lyme pregnancy was exactly what i needed.

seated in a wheel chair at the front of the main hall, dr. jones tells the audience “i’ve never used a computer before. this is going to be fun!” at 82, the leading pediatric lyme physician has been under fire from the connecticut medical board for his long-term treatment of children with chronic lyme co-infections. he has worked with over 10,000 children from all around the world and in spite of his age and continued persecution, he keeps working.

all of the following information was taken from his presentation talking points. many of these statements or statistics are direct quotes.

there are three known ways that lyme disease can be transmitted- via a tick bite, gestational, or through breast milk. in an infected mother, the borrelia burgdorferi spirochete can cross the placental barrier, infecting the fetus with lyme. jones reports that the transmission is simliar to that seen in gestational syphilis cases. in a case study of 102 children with gestational lyme, where the mother was either untreated or partially treated for lyme, 66% reported a difficult pregnancy. 41% breast fed and all the children in the study improved with appropriate antibiotics.

some of the most common symptoms of gestational lyme include: hypotonia (“floppy baby”), irritability (accompanied by impulsivity), cognitive problems including learning disabilities and mood swings, fatigue and lack of stamina, pain, low grade fevers, pallor, sickly, and dark circles under the eyes, arthritis or painful joints, unspecified rashes, GERD and vomiting with coughing, frequent URI and otitis, noise, light and skin sensitivity, eye problems, developmental delays including language and speech problems, and more. about 10% of cases presented with symptoms consistent with the autism spectrum.

in one study, pregnant women with lyme who were treated with 2 different antibiotics throughout the duration of their pregnancy had no reported presence of lyme in their babies. 25% of those treated with only 1 antibiotic had children born with lyme and 50% of mothers who were taking no antibiotics had children born with lyme. in a different study, in a  mother being treated for her active lyme, 85% of newborns were normal. in those not receiving antibiotics, 33% of neonates were born normal. however, there were many adverse events including miscarriage, stillbirths, perinatal death, congenital anomalies, sepsis or chronic progressive infection. women who also had babesia need to take mepron to help prevent transmission of babesiosis.

if born with congenital lyme, children need to be treated immediately to give the best chance of eliminating the infection and reducing the potential for long-term damage. jones states that kids fare best with agressive treatments that last for a sufficient duration.

live spirochetes have been isolated from breast milk and nursing women with active lyme need to be treated with appropriate antibiotics in order to prevent disease transmission.

many mothers infected with lyme are unaware of their status, and subsequently do not know to seek adequate treatments. lyme symptoms in babies are often misdiagnosed or overlooked, leading to late diagnosis and treatment. the longer the child goes without being appropriately diagnosed, the more severe and complicated the clinical course.

it is not known whether infection in the father is a factor in gestational lyme. there are anecdotal reports that an infected father contributed sperm in IVF to a mother previously uninfected and the child was born with gestational lyme.

after listening to all of the information provided in this lecture, i felt a little better about my odds of having a safe pregnancy someday. because of my autoimmune diseases, i realize that this data is somewhat limited in how it relates to my situation. in regards to pregnancy and lyme disease, it seems that with close monitoring and consistent treatment with two antibiotics throughout the duration of the gestational period and the duration of breast feeding, one’s odds are favorable. dr. jones also stated that a patient need not wait for her lyme to be incredibly stable in order to try to get pregnant and that was, perhaps, the most important thing for me to hear. there are still a lot of risks involved with pregnancy and high rates of fetal loss, but it’s not impossible. for now, my partner and i are putting both adoption and pregnancy on the back burner. my biological clock comes second to my treatment. period.

i haven’t made it home yet. i have high hopes that it’s going to happen for me in the near future. after flying from toronto to nyc yesterday, i haven’t escaped brooklyn. following a chance run in with one of my best friends yesterday, dinner with my ny family, a sweet day today of seeing friends, cashing in on a free massage (compliments of my amazing partner), checking in with my primary care doctor (who is unparalleled. she’s gone to bat for me when no one else would), i’m now stuck in my dude’s office. i’m patiently waiting for him to wrap things up so we can make the 60+ mile drive home. in the mean time, i thought i’d write up a few thoughts post-ILADS conference.

for so many years, i’ve felt pretty in the dark about my health. in the late 90’s, when i was first diagnosed at the mayo clinic with a mixed connective tissue disease and other autoimmune diseases, i thought i could get in front of it. i believed with every fiber of my naive little heart, that if i followed doctor’s orders, all 9 of them, that i would recover. i thought i’d improve. i thought i’d still have the life i imagined for myself. by no means did i really understand what was happening to me back then. fresh out from under my parent’s roof, i hadn’t made a habit of making my own decisions yet. i deferred to everyone else’s expertise and judgement. after a couple of years of getting progressively worse, plateauing, getting slightly better and then crashing into a void of all new ailments, i gave up “the know.” it just wasn’t possible. i started to think my doctors didn’t have a clue what they were talking about, save my osteopath and therapist, who both helped me immensely. anyway, i tried to keep up with the ever-changing landscape of my sick mind an body, but i just couldn’t. finally getting a lyme co-infection diagnosis was the first time in a long, long time that i considered the possibility that i could really participate in my wellness. i mean, i’ve done A LOT on my own to try to get better and don’t get me wrong, it’s been beneficial. i’ve changed my diet, my sleep, my chemical intake, my relationships, my spirituality, my everything, but i’ve stayed sick.

i left the ILADS conference feeling empowered for the first time. ever. i have new options to explore, new doctors with alternative treatments, new possibilities and tons and tons of information. and to make things even better, my primary care physician sent me an email today saying that she was researching a lyme conference that she could attend and she found the ILADS one, but a little too late. i love that she’s looking into lyme education. i think all doctors should be more like her- invested in their patients and active in new developments in medicine. so tonight, i feel exhausted and i really, really need to just transport myself to my bed, snuggle my furry little loves and sleep for 12 hours. but when i crawl into my own bed for the first time since october 23rd, i’m going to fall asleep feeling like there’s a light at the end of this tunnel and with the knowledge that i can somehow make it out of the darkness.