breakfast. this "beware of this and that" edward gorey sticker was already sitting on the table. it seemed a perfect place to rest the first of five daily doses of pills.

last week, i got my “new patient consultation” notes from dr. j. it was page after page of my psychosocial as well as medical histories, medications, treatments, and dr. j’s impressions, recommendations and treatment plan. reading through it was the first time that i’ve read a clinical impression and actually felt like i was reading my own story. there are some discrepancies, of course, but it comes pretty close to covering all of my bases. there’s something incredibly relieving in a medical professional seeing your endless, chaotic battle with illness and trauma and there’s also something profoundly sad about seeing it on paper. i read the one and a half pages of his impressions out loud to my partner. it was… considerable. at the end dr. j writes:

This patient has probably been sick all of her life and it is rather remarkable that she can formulate such a comprehensive background history and present herself so well today. We wish to compliment her on her determination to do this.

i have to say, in the sea of all my system’s failings, it was nice to get some credit. like so many other people who have invisible disabilities, i’ve become an adept illusionist, masking my illnesses, my pain, and my fears. a chronically ill friend recently said to me, “you can tell when i’m sick because i’m dressed up.” i laughed. i knew exactly what she meant. i can’t even run to the post office without changing out of my sweatpants. god forbid i look how i feel.

on the first page of this report, dr. j writes that i am an “excellent historian.” yesterday, after discovering a disc of old photos i thought was long gone, it hit me how astute that observation really was. i’ve spent almost my entire life chronicling everything. when i was five or six, i started keeping a diary. when i was ten, i began keeping two journals: one that was my reality, one that was fictitious (to keep my snooping brother off my truths). my freshman year of high school, i took a photography class and was hooked. i started documenting my life and the people in it with every form of media i could find. when my illnesses finally overtook me and my life outside of being sick started to shrink away, so did my desire to keep all these memories. the past seven years have enormous sections that have been mentally and emotionally redacted. the idea that i could still somehow be a historian is inspiring.

my first set of blood labs came back last week (and by ‘came back,’ i really mean that i made about seven phone calls to get them sent from the lab to my doctor). i’ve been in this business for long enough to be able to read the results, but when the head of the nursing department called me to talk about the remarkable, abnormal results, i didn’t know the two tests we were talking about. the first was ACTH, also called corticotropin. this test measures adrenal function by reporting the level of  the steroid hormone, cortisol, in the bloodstream. my cortisol level was really low, indicating that my adrenal system isn’t functioning properly. we’ve probably all heard those annoying commercials about “stubborn belly fat” and how that would go away if you could reduce your stress and lower your high cortisol levels. low cortisol levels, however, are accompanied by extreme fatigue, increased infections, lowered sex drive, low blood pressure and other symptoms. i’ve long suspected that my adrenal gland wasn’t doing its job. i’ve been on consistent, but varied, doses of prednisone, a corticosteroid, since 1999. prednisone suppresses the function of the adrenal system. even though i’m taking a very low dose, i’ve been worried that i’ll never be able to get off of it because of the adrenal mess. turns out that, at least for right now, i was right. the doctor prescribed a different corticosteroid called cortef (generic name hydrocortisone). it’s supposed to increase my cortisol levels, to bring them up to a more normal level. in six weeks, i will have the ACTH test again to see if my cortisol has evened out.

the nice nurse also informed me that i have a MTHFR dna mutation. what the deuce is that? turns out it’s a gene with an incredibly long name that provides instructions for making an enzyme that creates amino acids. down the road of MTHFR causality, the body makes proteins and other necessary compounds. the mutation can cause blood clots and problems in pregnancy, as well as increased probability of thrombotic disorders. there’s nothing that i can take or do to fix this; it’s a gene mutation. i’m not really concerned about it, probably because i’m way under-informed. i’m not going to read the articles about the MTHFR mutation affecting pregnancy, though i find it slightly ironic that MTHFR looks like an abbreviation for “mother f—-r.” dr. j said that i’m at least two years away from even thinking about getting pregnant… i am, once again, telling myself that worrying is a lack of faith.

since i think i’ve ended another post with that mantra, i’ll end it like this instead:

please sign this other petition urging the IDSA to change their Lyme disease guidelines.

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my kidney function looks great, the director of the specialty clinic says on the phone. i know the numbers. i know what creatinine measures. i know this already- that my kidneys are working right now. he says it like it’s a victory, like the rest of my body isn’t busy being colonized by alien invaders, while the rest of my physical decimation is being carried out by my army of overactive immune system soldiers.

i’m staring down the barrel of a battery of tests that feel familiar, too vaguely reminiscent of a place i stood ten years ago, and that scares me.

i’m dressed in a khaki colored gown and a pair panties. i’m curled up in an uncomfortable chair in the second waiting area of radiology imaging; i’m staring at the pair of green wool socks i put on at 6 am. i chose them knowing my pale legs would be sticking out of a gown and that i’d be padding down hospital corridors looking just like this.  i’ve already had my abdominal ultrasound. i’m just waiting for my mri, with and without contrast.

i asked my sonogram tech, i think her name was terri, if she could explain what we were seeing as we went along. she told me she really couldn’t, that her work required all of her and that just telling me what organs we were looking at would be too distracting. “oh, that’s okay,” i said. “i understand. i just think this is all kind of fascinating.” that piqued her interest. terri wanted to know if i had a medical background. “no, i’ve just been sick for 13 years.” she asked if i had taken classes, like anatomy. i said that i had and that i’d also taken physiology, and that was apparently all she needed to know. she was talking to a layman, but one who at least had a generalized understanding of the interior of a human body.

she couldn’t stop gushing over the images popping up on the screen. “this is beautiful,” terri cooed, maybe to me, probably just to herself.  she’d move the wand to another gelled-up part of my body. “oh! this is just perfect! i never get to see ____(insert organ here)____ so clearly.” i made the assumption that it was because i’m so skinny. “actually,” she said, ogling my grainy, black-and-white spleen, “size does have something to do with it, but most people have so much air and gas and that’s what really gets in the way. you don’t have any!” who knew that my food combining would pay off in an sonogram? terri told me about how much she loved this part of her job- the actual finding, viewing and measuring of organs. she said she hated the other stuff. just then, another technician burst into the room, saw me, and gruffly apologized for barging in. “i need this room,” she barked. “you almost done?”

when it was just terri and me again, she turned and said, “see? that’s the part i could do without.”

maggie, the other tech, returned to the room to strip the bed and prep it for the next patient. without turning away from the screen, which had about 6 different images of my abdominal organs on it,  terri waved a hand in front of the pictures and said to maggie, “look at this. have you ever seen ones so beautiful?” maggie said nothing.

a couple hours later, i was in the mri waiting room, in that khaki gown, trying to ignore the grating voices of those horrible morning talk show ladies on the tv. they were drinking prosecco, making awful jokes and squawking about valentine’s day. i started thinking about terri, completely mesmerized as she peered into the inside of my body. it made me wish that i had something like that, work that i could lose myself in, do for twenty years and never tire of. it made me think that i just haven’t had that chance yet, that my passions, however intense, always get put on the back burner, my diseases put on the front. and as i started to feel wistful about how i inherited my father’s proclamation of being “a jack of all trades, an ace of none,” it occurred to me that maybe i’ll just be a late bloomer. when i get well, and i’m going to get well, i’ll discover that one of my countless hobbies glistens just a little more than the others. grey haired and doddery, i’ll tell interested onlookers that i can’t really explain what i’m doing because it takes all of me to do my work.

temper tantrum alert.

January 26, 2012

real talk: this shit is not good for my health.

yesterday, after days of waiting and waiting for my nurse to call back with appropriate codes for the remainder of my lab work, i just went ahead and had it drawn. i waited for about 45 minutes while the phlebotomist sat on-hold, trying to get someone at my doctor’s to give the necessary info. eventually, that happened. i signed a piece of paper stating that if my insurance wouldn’t cover these particular tests, that i would pay the $1460 for the four tests. awesome.

i’m supposed to go to westchester medical center tomorrow to have an ultrasound of my abdomen, get an MRI with contrast, and have some blood drawn there because my lab can’t handle the order for cryoglobulin. i’ve been scrambling for a whole week to get all of my tests scheduled, but as of this morning, i still only have 2/4.

i just received a phone call from westchester saying that they never received my lab work, results that they need in order to perform the MRI. I was told that when they called the doctor’s office, they said that they did not have the results yet. it was 3pm and the labs have to be in by 5pm in order for me to have the test. so i called quest and explained what was happening. could they fax me the results so that i could get them to the hospital? no. could they fax it to my doctor’s office? yes. but then… communication with my doctor’s office has been a nightmare and the triage nurse in charge of my care has been out sick, so how will i be sure that they get the results in time? i can’t be. so i’m waiting. again.

i’ve been in a bit of a panic about this for days. all of these things are out of my control, and i’m doing my best to relax and accept that, but i’m not meeting my goal. i don’t know if it’s really warranted panicking or not, but i’m having so many problems getting anything done that i’m starting to feel like i want to give up, throw myself in bed and not get out for a few days. at the very least, i might just pull a blanket over my head and walk the house like a halloween ghost. also, my spine feels like it’s trying to worm its way out of my body. i think i’m only partially human, mostly i’m a mess of nerves and anxieties that i can’t quiet.

please, oh please, lady at radiology, call me back and say that you’ve got the results and we will go ahead as planned. i don’t want to have to drive over an hour in morning rush hour to have three separate appointments to get four tests done. i suppose i can do it, but i don’t wanna.

waaaaaaaaah. that’s right. i said it. waaaaaaah. i’m a freaking cry baby. so what?

according to the infectious disease society of america (IDSA) lyme disease practice guidelines for professionals, as taken directly from their website:

  • There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (⩾6 months) subjective symptoms after recommended treatment regimens for Lyme disease.
  • The objectives of these practice guidelines are to provide clinicians and other health care practitioners with recommendations for treatment of patients in the United States with suspected or established Lyme disease, HGA (formerly known as human granulocytic ehrlichiosis), or babesiosis.

THE PETITION TO CHANGE THE IDSA GUIDELINES FOR LYME DISEASE:

since i signed it this afternoon, about 1300 more people have signed on. i can’t stress how important it is that we participate in this action to create change. these guidelines are what prevent those afflicted with lyme (and co-infections) from getting the treatment we need. these guidelines are what allows insurance companies to not only deny us coverage, but also to sue the doctors and practitioners who treat us for not following the IDSA guidelines for malpractice.

rather than spend time trying to figure out how to word this, i’ve just pasted the entire body of an email i received from lymedisease.org asking people to sign this petition to change the IDSA guidelines for lyme disease.

to add your name to the petition, click this link.

REMOVE OUTDATED IDSA GUIDELINES FROM NGC!

Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.
The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.
This is wrong because:
  1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;
  2. The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
  3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and
  4. The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.
Sign the petition to urge:
  • The NGC to remove the guidelines as its listing rules require.
  • The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease.

didn’t see my earlier link to the actual petition? that’s okay. you’ve got a second chance. i totally get that remembering anything is a challenge.

to add your name to the petition, click this link.

wishbone.

January 22, 2012

i’m considering writing this in the jacuzzi, but my laptop is not lifeproofed like my phone. i’m sitting on an ultra-comfortable couch (though it’s that mountain rustic look which wouldn’t make it anywhere near my house) in front of a fire. i’m on vacation in the adirondacks, y’all. in the fall, i made a promise to myself that for the first time since i got sick, i would go snowboarding. given the whole toe ischemia and subsequent necrosis, not to mention the conversation i had with my grandfather last week where he pleaded with me not to do it, i realized that this weekend isn’t the time. yesterday we went to an alpaca farm and also met a 3rd generation garnet miner/gem cutter who gave us a geological and historical lesson about the region. who knows what we’ll do today?

though i didn’t really intend to write while away, i woke from a dream about how i needed to pull together a poem to make it into a national poetry slam, but a group of vagabond asians in a caravan of cars had decided to use my parents’ house as their new base camp. unable to find solitary space in the dream, i kept trying to justify using an old poem from my chapbook, but i couldn’t remember if i’d performed it before. also, some of their cars caught on fire and i was trying to convince my wayward visitors to just use the empty lot at the top of the hill as a home instead of our garage. they were wrecking my literary flow.

i rose into this morning feeling like i should write, but knowing that most of my writing life is buried in an only semi-functional brain. my memoir/novel is stashed on a harddrive in fragmented chapters that last saw the light in 2010. my poems are collecting dust in binders and stacks of paper piled in boxes. my heart, that  broke for my sudden inability to express myself with written words, has resolved to accept where i am. i hold hopes that when i’m better, i’ll rekindle my relationship with words.

today, rather than key in the developments of my dis/eases, i’m going to stay on vacation and share a poem i wrote in november. if only for the duration of a few short lines, it made me feel like i saw the world through words again. it’s kinda lame. it’s not my best work. blah. blah. blah. it is what it is.

11.6.11

while deboning a chicken,

i found the wishbone,

       and set it aside to dry

       so later you and i could

       crack its brittle clavicles,

       pull it apart and see whose wish gets granted.

but this morning when i saw it sitting on the counter,

       i realized that if we each take a side

       only one of us can win.

i don’t ever want to be your victor.

i’d rather we leave it whole,

        collect a graveyard of unbroken bones

        and tend to a life of both our dreams.

when we moved to this town a year and a half ago, i pulled a tick from behind the dog’s ear. there was a giant red welt that wasn’t getting better or smaller. in a moment of concerned desperation, i took the dog, mars, to the closest veterinary clinic i could find. the staff were the exact opposite of the staff at our brooklyn neighborhood clinic. they came out from behind the desk, sat on the floor with a fistful of dehydrated, raw dog treats and squealed “aren’t you the cutest dog ever?”

mars surrounded by felt carnage.

back in an exam room, i instantly wanted to be friends with the veterinarian. she also sat on the floor while my dog licked every inch of her face, and she laughed with every ounce of her being. i told her about how my dog didn’t know what to do in our wooded yard and had resorted to peeing on the deck, the closest thing to concrete within an acre of the door. i showed her the tick i’d pulled off of mars. apparently, it was a brown dog tick, which can cause canine ehrlichiosis, but does not carry lyme. she asked me what we were using for tick prevention and had we vaccinated her for lyme? “no,” i said. “the odds of her getting a tick in the mccarren dog park weren’t really so high.” she asked me if we had tried anything natural, like clove oil, to help deter fleas and ticks. “no,” i told her. “but i would love to.” she gave me a bottle of ectopamine, a blend of essential oils, to spray on the dog’s fur to kill and repel ticks and fleas. she also recommended that we vaccinate the dog for lyme. i agreed. my first dog, the one who has grown old at my parent’s house, suffered a devastating bout of lyme disease, and i didn’t want a repeat of that. i confessed that i was surprised that she had offered me a natural solution to the problem, to which she responded cheerily “we’re a integrative, holistic clinic.” it was kismet. i had unwittingly taken my beloved dog to get the same kind of medical care i seek for myself. of course, at this point, i had not yet been diagnosed with lyme co-infections. lyme is a zoonotic disease, which means that it can be transmitted from an animal to a human. except for the fact that lyme caused joint swelling, particularly in the knees, i didn’t know shit about shit.

yesterday, i took the cat and the other dog, minion, who loves to torment the cat, to the vet. i told her that over christmas, while chasing canadian geese, minion had broken through the frozen ice of my parent’s pond, been rescued by my brother, who threw a canoe onto the ice, tipped the canoe, swam to the dog, threw the dog in the canoe and swam back to shore- all while i was in the shower. “impulse control,” i said. “he has none.”

“oh,” she said, kissing the top of his head, “all he needs is a little obedience school.”

minion and mars falling in love with carpeting at my parents' house. yes, they are wearing matching sweaters. i'm only slightly embarrassed about that.

“believe me, i know,” i told her, “but i can’t find a six week window to actually commit to. i’m getting treatment for chronic lyme, babesiosis, and bartonella, in addition to my autoimmune stuff, and i just can’t get it together to get him into the same training his sister had.”

then my vet, my future friend, told me that she had lyme disease. she said that her daughter had suffered from bell’s palsy, facial paralysis, and had been hit really hard by lyme. her two-year-old had also tested positive for lyme. i asked if she contracted it gestaionally. she wasn’t sure. they had all been treated by an integrative lyme specialist and had recovered. then we talked about all the other people we knew who had it. a receptionist at the clinic had to quit because of her lyme disease. i told her about the research showing that songbirds had been transporting lyme to previously unaffected regions. “it seems so obvious,” i said, “but it totally blew my mind when i heard that.” our conversation went on for awhile, and i, for once, won’t go into the details. i left with a feeling that has become too familiar; lyme disease is everywhere, affecting more people than we can imagine and we have a system that, despite overwhelming evidence, pretends it doesn’t exist. we’re sick. we’re losing our jobs and our livelihoods. we’re literally dying from this disease and we can’t get adequate treatment.

you know how much an eight month course of iv antibiotics costs? it’s somewhere in the neighborhood of  $35,000 (this is a reliable estimate, and not an individualized bill). my insurance won’t touch that. i’m not in a financial position to buy myself a luxury car (that would cost about the same, right?) or even fix our broken chimney, but my partner, my family, and i will figure out a way to pay for my treatments. even though it’s going to be a struggle, i’m lucky and blessed to be able to navigate a price tag like that. what can the rest of the chronically ill, lyme patients, who can’t find that kind of cash, do? i don’t have a solution yet, but i’m going to fight like hell to find one. i don’t want to live in a world where only the rich and the middle class can cure their diseases.

jumping through hoops.

January 17, 2012

i had fasting blood work drawn this morning, but because there were so many tests ordered, we were only able to take 18 vials of blood. i’ll need to return in the next day or two to have the remaining work done, but first i need to contact my doctor and see if there are other codes available that they can give me to bill my health insurance. if not, i’ll have to pay for 4 of the 48 tests ordered. i’d rather not have to do that.

when i walked in the door, my tiny hands shoved into enormous gloves, the lab tech said “heated gloves? those are great!” i agreed with her and said that i wished they made some smaller ones. “yeah, they’re all pretty bulky,” she said. “you use them for raynaud’s?” i told her that i did. the lab tech was friendly and shared with me that she has raynaud’s, as well as scleroderma and sjogren’s. i find that this happens a lot when i’m at doctor’s offices or labs; technicians and doctors, receptionists and other patients, all seem to spill their medical stories to me. sometimes this information is really intimate, detailing the sad downward spiral of a family member who passed away from an autoimmune illness because they didn’t have insurance, or confiding in me that their teenage daughter is waiting for a liver transplant because of her autoimmune diseases. it’s like being in a very temporary confessional booth, where someone’s fears, sadnesses, triumphs, and anger can bubble to the surface for just a moment or two. i think they look at my medical charts, and add that information to this person (me) who is being kind, looking them in the eyes, asking questions about how their day is, and the result is that for that sliver of time, they trust me. i think we all really need a sounding board for this shit and for me, it’s this forum- a somewhat anonymous blog (though according to the site data, about 2/3 of the people reading this are people i know.), where i tell the truths of what i’m going through. thank you, internets, for allowing me this outlet, bad grammar and all. i need it.

after lunch with a friend, i came back home and started trying to schedule a brain MRI, an abdominal ultrasound, a brain SPECT scan, and a HIDA scan. my doctor recommended i get these done at the westchester medical center, so i called the general number and sat on hold for 40 minutes. while waiting, i used the house phone to call the MRI and imaging department. i got ahold of a real human being and hung up with other line, the sporadic, static-riddled, elevator music one. this began the 2 1/2 hour run around. i called 9 different departments before being able to schedule just two of the tests. i then called nuclear medicine to try to schedule the remaining procedures, but after another lengthy wait, i got an answering machine and left a message. put really simply, these tests are to determine what’s actually happening in my brain and to evaluate my gallbladder so that my doctor can decide whether or not i need to have it removed. good times.

i’ve got to get a move on to fill out this paperwork to keep my prescription benefits in 2012. i don’t even want to think about what would happen if that doesn’t get approved. speaking of prescription approval- i cannot get viagra covered by my insurance. without insurance, a one month supply costs over $600. if i were a dude who wanted an erection, i’d be able to waltz away from walgreens with my little blue pills and go get my groove on. however, i’m just a girl whose hands and feet are in constant danger of becoming gangrenous, who needs a medication that will increase blood flow to my extremely important fingers, and that, my friends, is apparently less important than getting boners. can i get a patronizing, synchronized slow clap for yet another pharmaceutical company failure?

under my skin

January 16, 2012

a couple of nights ago, with my mom and me on the couch and my brother and my boo laying on the floor (lay is the past tense of lie, right? i can never remember…), we watched under our skin, that brilliant documentary i’m always referencing. i’ve been asking my mom to watch it for months now, but old, dinosaur-technology-television mom and dad don’t have an internet connection to their t.v. (or netflix or apparently a video store), so she hadn’t gotten around to it. having just come from my appointment with one of the doctors who is featured in it, it seemed like a fitting time to view the film. you can, by the way, watch it on hulu. here’s a link.

this is the third time i’ve watched under our skin. the first time was in may or june and i was perusing all of the documentaries i could watch instantly on netflix. i was sick, stuck on the couch and willing to watch anything. as the movie progressed, this knot in my stomach grew bigger and bigger. the stories were my stories. the giant boxes filled with useless prescriptions? i have stores of those. the onslaught of people saying their doctor told them to see a psychiatrist because their symptoms were clearly psychosomatic? i’m holding a sign in that parade. the areas of the country that are considered endemic? i’ve lived there, hiked there, had tick bites there. just about everything in the film resonated with me and a few days after watching it, i asked one of my rheumatologists to run a western blot test for lyme disease.

the second time i watched the movie, it was with my partner, after my diagnosis. i don’t really remember what we thought during that viewing.

so this last time, the third time i saw it, my experience was totally different.

i’m not a cryer crier. see, i can’t even spell it! in the past, i’ve blamed this on being japanese, that my cultural mask of emotion dare not betray how i felt. i’ve also pointed fingers at sjogren’s syndrome, which prevents my tear ducts from actually producing enough liquid to form more than one or two tears. hilariously, i thought perhaps i was fake crying when my body sobbed but my eyes were dry, that is until i found out that no-tear-lake business from my opthamologist. alright, so, you get the picture. i don’t generally cry. somehow, throughout the film, i found myself pushing back tears pretty constantly.

this summer, when i first started seeing a lyme literate doctor, i wanted to know why we weren’t being super aggressive with my treatments. “well,” she said kindly, “you’re like mandy, the girl from under our skin, and what they didn’t tell you in the film is that she almost died four times during her treatments. i had a chance to speak with her and though she’s doing really well now, she almost didn’t survive. your system is so delicate. you have a lot of damage and i don’t want to subject your body to more than it can handle. we need to go gently.” when i drove home from that appointment, i had a solid 40 minutes to listen to sad-bastard music and weep my two tears. at times in my life, i had been a lot like mandy, seizing, riddled with muscle spasms and facial ticks, my hands twisting into gnarled branches for no apparent reason. but i wasn’t as bad off as she was, was i? i certainly didn’t face the same dangers as she had in her treatment of lyme, right? i drove home feeling sad, really, really sad. and just as quickly as my sadness had come, i buried it and moved back into my positive light. i mean, that’s where i try to live- in the light.

watching the film again, with all the information that i now have, with a two-year treatment plan in place, with one of the best doctors in the world managing my care, i felt sad again. i felt sad for my mom, who clutched my two dogs tightly when there were more emotional scenes. i felt sad for my partner, who put his face back into the computer when someone on screen talked about risk or pain. i felt sad for myself, because this has been such a painful journey and i’m embarking on a stage of treatment that’s going to take away my independence, and dictate just about everything that happens over the next year. i feel like i’ve lost my agency to dis/ease and i know that this is how i get to get it back, but i’m nervous and… sad.

for someone with a fairly expansive vocabulary, i sure can’t surface with other descriptors.

standing outside on the porch that night, waiting for our dogs to get the deed done and come back to the house, my partner confessed his fears. “i know,” i said. “i get it, but it’s not that dangerous. i’m not as sick as mandy was. it’ll be fine.” and i told him that what struck me was that i think i know what the difference is for me now. i take excruciatingly good care of myself. i’m psychotic about germs coming in the house. i am militant about my sleep. i eat a painstakingly healthy diet. i exercise as much self-care as is humanly possible and i’m better for it. but that care is consuming and exhausting and i come across as a lunatic half the time, especially when i force the passenger in my car to use my hand sanitizer and if they don’t want to, i’ll just wipe that shit on their hands when they’re not paying attention. i have two sanctuaries from the outside world: my house and my car. back before i implemented all of these crazy rules (and earned myself the nickname “rules” from my familial housemates), i was sicker than my mind will allow me to remember. once i remember rolling onto my stomach while sleeping and being unable to roll my body back over. i have these brief recollections of times like that, but no real concept of how miserable it was to live like that every single day.

i can’t explain some of the sadness i’m feeling. truthfully, i don’t really understand it, but i don’t really have to. all i have to do is keep moving forward, one slow step after another and time will do the rest.

oh right… the seizures.

January 14, 2012

i just realized that i didn’t mention the seizures i’ve had/been having in my last post and that’s a pretty key reason for needing all of this brain chemistry balancing. i mean, maybe it was implied by my explanation of a few medications being used to treat seizures, but they’re all used to treat other disorders, psychiatric and otherwise. maybe i left that out because it sounds so alarming and the types of seizures i’m having now are not so severe. i used to (years ago) have grand mal seizures, as well as other kinds, but i haven’t had a grand mal in a long, long time. the last time i was tested, i did not have epilepsy. i’m not a dangerous driver and there haven’t been recent complications as a result of the seizures. that said, the following paragraphs should provide a clearer understanding of what they are like.

for the most part, i’m having simple partial seizures, which means that i’m conscious and don’t lose memories or time from them. they’re typically really short, lasting between 30 seconds to, at most, a couple of minutes. and really, i think i’m so used to having them, that i forgot that they were seizures at all. the most common type of seizure i experience is a motor seizure. they’re usually on the right side and upper quadrant of my body and they originate in my hand. my hand contracts and the muscles in my arm spasm, sometimes spreading up into my shoulders and my face, but just as often not. other types of motor seizures i have feel like there’s electrical currents running into just one finger or into my eyeball. they’re pretty mild, not usually scary, and i have noticed that if i become acutely upset, that can trigger them.

i also have sensory seizures, which can manifest as auditory hallucinations or distorted hearing. i didn’t realize until recently that those were probably seizures. they’re just something that comes and goes. ten years ago when i was at the height of my seizure activity, i endured a horrible period of time when i had visual hallucinations. those were most likely sensory seizures.

sometimes i have what i think are psychic seizures, short bursts of inexplicable, extreme emotions. sometimes this is a sudden, overwhelming feeling that everything in the world is awful. other times, i’ve been overcome by fury and by the time i’m able to label the feeling as angry, it’s already over. some of these are just me being totally confused for a second.

there are probably other examples of this that i haven’t yet put two and two together on. i just felt like maybe i should give a deeper explanation of what all those new meds i’ll be taking are for.

my first date with dr. j

January 14, 2012

who needs privacy anyway? i do, but i haven’t had any since december 20th. in those three+ weeks, i’ve put 4,000 miles on my car (take that carbon footprint!). after weeks of being on the move, i’m finally back in new york, stretched out on my own couch in the chicest pair of silk pajamas, an equally gorgeous silk robe and fuzzy slippers. of course, i’m not alone on the couch… there are two humans and two dogs sharing MY space: talking, barking, moving around, generally taking up room. still, i’m home and that feels great.

after driving 16 hours on monday to get from illinois to new york, my mom and i unloaded and reloaded the car and took our two-person show down to d.c. on tuesday. we stayed the night with my dear friends and their unimaginably adorable 2-month-old baby, none of whom i wanted to leave on wednesday, but i’ve been aching for my own home for a long time now.

wednesday morning we got up shortly after the baby woke, brewed some coffee and headed off to meet with my new lyme doc, dr. j, for my initial consultation. i wanted to be so much more prepared for the appointment than i was, but without any down time, my fuzzy, little mind just wasn’t able to find the headspace i’d hoped for. however, the super friendly staff at dr, j’s clinic, quickly put me at ease. i filled out some paperwork, mostly saying that i understood that my insurance company would not be billed and that i would be responsible for all the charges incurred. i paid the remaining portion of my $750 first appointment charge and was escorted to exam room 1. a sweet technician apologetically took my blood pressure sitting, standing, and lying down. when i tried to lie down on the table, my chest pains flared; she said she was sorry. i must have been more nervous than i really knew because my pulse was racing. she said the doctor would be in to see me in a few minutes and left my mom and i in the exam room.

dr. j came in- all business. we ran through a chronological medical history, which i awkwardly recalled my medical life to the best of my abilities. ten minutes into my fumbling recollections, i finally pulled out the printed timeline i’d labored over a month earlier. he asked questions about events and i struggled to remember the progression of my diagnoses, diseases and treatments. then he moved onto my four-inch thick binder of medical info, poured over lab results and doctor’s impressions, scribbling notes on his own stack of papers. satisfied with this portion of the appointment, he asked me to change into a hospital gown and told me he’d return to perform a physical exam. the exam consisted of your typical reflex tests, chest thumps and breathing with a stethoscope. he pushed on about 30 different places on my body, many of which we’re tender or painful under his touch. for example, he thumped a spot just above the hinge of my jaw. “okay,” he said, “that hurts, but does the pain radiate up or down?”

he asked me to walk toward him, heel-to-toe. i wobbled forward. he asked me to try it again with my eyes closed. i veered left, my feet failing beneath me. after he left the room, i marveled, “i can’t walk with my eyes closed?”

“i guess not,” my mom laughed. there were a few tests i wasn’t able to perform so well, which surprised me. i redressed, sat down next to my mom, and continued her tutorial of her new iphone 4s. she wanted to know how to change her wallpaper. i took a series of self-portraits, increasing in ridiculousness. my favorite, a pose i like to call “rat face,” became her locked screen saver. “get that off of there!” she demanded. “that’s horrible! i don’t want to look at that!” we laughed and laughed. it reminded me of our time sitting in exam rooms at the mayo clinic a decade earlier, waiting for a doctor to reappear in the doorway. it’s been years since my mom has accompanied me to appointments but we spent the bulk of my early twenties exactly like this.

when dr. j returned, we all seemed a bit more relaxed. he complemented my understanding of tick-borne diseases and noted that i seemed to have a good support system. he stated that i had a complex history, with serologic evidence of mixed connective tissue disease (with my most significant markers indicating SLE lupus and sjogren’s overlap, though i do have other autoimmune markers/diseases), as well as recent labs supporting my diagnosis of multiple chronic infectious disease syndrome (MCIDS- aka the presence of multiple tick-borne diseases). he said that if we treat the lyme and co-infections, the autoimmune diseases should improve and that eventually i’ll be able to get off of prednisone (corticosteroids). dr. j said that we would continue to monitor my lab levels (like ana, sm/rnp, and chromatin) to see how they are affected by my treatment. my lymphopenia, a lack of lymphocytes, is just further evidence of my immune compromised state. he observed that the muscles on my right side are notably weak and that the tension in my neck and shoulders is severe and limits my range of motion. the strange sensations and weakness in my muscles speak to how my motor skills have been affected by lyme.

when we started to discuss the treatment plan, i was surprised to find out that i won’t be starting the “real” portion of my treatment for another 8 weeks. in order to prepare my body for the iv antibiotics, i have to really balance my system. as is true with all health matters, restorative sleep is a key ingredient to wellness. at night i’ll be taking trazadone, an antidepressant that has long-lasting sedative effects, in combination with klonopin, a benzodiazepine that works by decreasing abnormal electrical activity in the brain. i’ve taken it in the past to help control seizures. i can continue to take rozerem, a sleep medication that induces an REM state, and i will also be able to stick with melatonin and rescue remedy sleep.

i take a lot of supplements, vitamins and herbs, none of which he saw as an impediment to my treatment, so i can keep taking those. i’ll be increasing my magnesium and methyl b-12. until i start the iv antibiotics, i will continue to take 500 mg of azithromycin and the subsequent nystatin, needed to help prevent fungal infections. he has requested that i add saccharomyces boulardi to the probiotics i’m already taking. antibiotics kill all the bacteria in your gut- good or bad and high doses of probiotics are crucial to maintaining positive gut flora.

he’s starting me on 25 mg of lyrica, to help control neuropathic pain, and 25mg of lomictol, which is generally used to control seizures. i’ll also be taking low doses of ativan, an anti-anxiety medication. all of these medications are supposed to help control pain, essentially calming my frayed, raw nerves and helping to sooth the increased electrical activity in my brain. i’m not gonna lie; i’m scared of taking benzos. i was prescribed high-doses of them to help with seizures and they’re highly addictive. i’ll be on a strict schedule with these, not taking them prn, like i did years ago, but i don’t like being on anything that i’ll go through withdrawal if i stop. but i’m not the expert, dr. j is, and i’m deferring to his judgement on everything. i’m also starting to take deplin, which contains l-methylfolate, nutritional support for the brain.

i’m going to need to have a few MRIs taken and some spec scans to get a clearer picture of what’s happening inside my brain. i’ll also complete a gallbladder study and may need to have my gallbladder removed before we move along. after all the meds have stabilized and the tests have been completed, after my medical picture has been “squared up,” i will hopefully embark on 7 months of iv antibiotic treatments. the treatment plan is intended to be manageable, not nearly as excruciating as i had expected. dr. j says that after a few months of the iv antibiotics i should start to have days where i “see blue skies.” there will be some reactivity, but i’ll hopefully be able to handle it.

now that i’ve written just this portion of my appointment out, i feel frazzled and need to step away from my computer. manageable as this all may be, i’m in it for no less than 2 years- plenty of time for me to update this info. right now, i need to stop thinking about it. 4,000 miles and four doctor’s visits later i just really, really need a break.