soldier on.

April 18, 2012

i’m in the middle of infusion number one of the four i’ll do today. i still haven’t recovered from my first run on monday, though i slept my way through most of tuesday. i’m really hoping that my reaction (herxing) the day before last will be the worst of it. fingers crossed. i don’t know how well i’ll handle another day and night of convulsing, rolling around on the ground, moving constantly and generally feeling like my body is possessed by a demon, of which i have no control over.

the fallout from two days ago convulsion party is that every muscle in my body is sore. it feels like i’ve fallen victim to a meat tenderizer. my eyes were bloodshot until this morning, i think because i was holding my breath to get through the stabbing pains and i probably strained something behind my eyes. today my actual eyeball is less red, but my orbital cavities are raw and red. my eyelids are heavy and itchy. my ears pop and hurt. i can’t stay in one position for very long. i have almost completely lost my apetite. my chin seems to have melted into an array of swollen lymph nodes. i’m having trouble walking and standing because it feels like my legs might split down the center like a hotdog. the toxic die-off affects the extremities because the blood flow is weaker, so my arms hurt too. also, i’m unreasonably crabby, impatient and angry, which i hadn’t really noticed until i was talking to a friend about her symptoms. this morning when i became instantly annoyed at my mother who hadn’t heard what i said, i remembered what my friend had said. maybe my disproportional reactions are caused by the die-off of lyme and babesia in my brain. it’s hard to know what’s a symptom and what’s not. it seems like anything that feels off gets thrown into the “that’s from lyme and co-infections!” category. my car started acting up today and i’m going to blame that on lyme disease too.

this is hard, really, really hard. even though it’s what i expected, actually experiencing it is excruciating. again, this isn’t written to simply complain about feeling like i’ve been run over by a truck, but to give shape to my process and progress. maybe i haven’t looked hard enough, but i haven’t found any blogs that were entirely engaging about going through treatment for lyme and co-infections. i have found great blogs about chronic illness that i can identify with but right now, that’s not the angle of support that i need. and the most lyme popular blogs? i found those to be utterly unhelpful. obviously, people can relate to those, but i didn’t. at all.

dear day three of the treatment schedule, please be gentler on me. please?

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i never did like babs.

April 12, 2012

i’m a few days past my last appointment with dr. j. and this is the first chance i’ve really had to write about it. the travel to dc is exhausting, in part because post-appointment i become militant about going shopping at whichever place i’ve pre-screened as the retail therapy session that will distract me. i’ve promised my partner that i will eliminate this aspect of our trip next month. we’ll see if i can deliver on that promise.

each visit to the clinic now consists of an in-office infusion of a new medication. i have to have a full dose of the infusion in front of them to make sure that i don’t have an allergic reaction to whatever the flavor of the month is. this month’s new medication, clindamycin, leaves a terrible taste in my mouth. after a few minutes, i felt like i’d chewed a giant mouthful of the bitterest pills in my box.

everyone was pretty nonchalant about my inability to follow directions on my first round of iv antibiotics. then as we talked about the babesiosis protocol for this month, we discovered that i hadn’t just screwed the pooch on one the antibiotics but had also added in artemisinin, also known as cortem, a month ahead of schedule. luckily, mail order being what it is, i didn’t get the plant extract until recently, so i’d only taken it for a for a week.

the next three weeks will target one of my co-infections, babesiosis, the malaria of the northeast. when i tested for all the lyme co-infections, the one test that came back with the highest positive result was babesia, a protozoan infection that attacks red blood cells by multiplying rapidly until the cell bursts, releasing more babesiosis into the bloodstream. infect, explode, repeat. this is likely the source of my chronic anemia and an one of the culprits of my extreme fatigue. i have tried unsuccessfully in the past to treat the infection with a two-component pharmaceutical cocktail of azithromycin and mepron. my physical reaction to this treatment was so severe that i genuinely started to fantasize about inducing a coma until i could come out on the other side. each time i tried to add the mepron, an anti-malarial liquid the color of yellow road paint, my herxing hit a point where i had to discontinue treatment. understandably, i’ve been dreading this course of treatment. dr. j helped put some of these fears to rest. “in the past, your system was not equipped to handle the treatment. we have you at a better place than you’ve been. it won’t be as bad as before.” i’m also taking the mepron on treatment days- monday, wednesday and friday as opposed to 7 days a week, like i did before.

this month has two different iv antibiotics, the meropenem i used last month and clindamycin. i’ll be taking septra ds, a combination of two drugs that create an antibiotic. after one week of that, i’ll add in the mepron and two weeks after starting this, i’ll add artemisinin and flagyl, an antibiotic that targets certain bacteria and parasites. after that, i get a whole week off of treatment and return to dc to find out what round three will look like. right now i’m on an antibiotic holiday, though last night i accidentally took the flagyl and spent the better part of the night nauseated with horrible stomach cramps. dr. j said that this reaction is likely a good indicator that the medication is killing biofilm, a dense colony of pathogens. i tried to keep that in the front of my mind while squirming around in pain.

i feel like i’m finally getting the feel for how all of these treatment blocks will work. each week adds new medications to the base protocol, which makes for a lessened reaction to the bug die-off. after the third week, i get a break from the iv antibiotics and most of the target specific drugs. even though i’m off right now, i’m not feeling great yet, but i’m hoping that the latter part of the day will bring a break in the clouds. i feel a little less scared of how this will unfold. i’m glad that i get a week off to allow my body, mind and spirit to recoup from the stress and pain of all of this. i need that.

i never got around to decorating vulgar easter eggs. i imagine everyone was waiting for pictures of my edible works of dirty art and you’ll just have to keep waiting. i hear that easter comes once a year so it seems i’ll have more opportunities in the future.

i ended yesterday’s post, mid-infusion, craving cookies and sitting on the couch. if i thought that giving myself the actual iv infusion was scary, what followed next was horrendous. i should tell you, i’m writing this from my inexperience, which made this whole event incredibly dramatic. i also feel like i need to document this because this is the kind of stuff i would like to have read. i want to know what someone else on a similar path has gone through, to give this all a shared human experience.

i spent the next 45 minutes staring up at the iv bag, waiting for it to finish. drawn into some hilarious back episodes of archer (okay, i’m starting to warm up to having cable, or at least to having on-demand and premium channels), i didn’t notice when the bag was finally empty. i stood on the couch and freed my line from my ukulele and headed to the bathroom. while in there, the doorbell rang. without an iv pole, i had to set the empty bag down to sign for some packages. i have become the reason that i use hand sanitizer after touching those door-to-door styluses. king ebi, my ten-year-old ragdoll cat, titled “king” for the week because he clearly believes he has vanquished the dogs and now owns the house, tried to make a pathetic run for the outdoors. his pale blue eyes don’t adjust well in bright light and he made it down two stairs before playing freeze tag and waiting for me to pick him up. by the time i got back in the house and remembered that i was on my way to my sterilized office to unhook my iv and flush the catheter jutting out of my left shoulder, the iv tubing had filled with about three feet of my blood. i forgot to close the valve on my powerline, allowing the flow of liquid to reverse because the iv bag had dropped to the ground, well below my heart (unless we’re speaking metaphorically, because in that case, i was tripping all over that panic-stricken, beating mess). of course, upon seeing that i had done something wrong, my lyme-addled brain completely forgot about the catheter valve.

okay. blood. i can handle that, right? i just needed to disconnect and flush the line. i washed my hands and ran into my makeshift procedural room, unwrapped a sodium chloride injection, unhooked the iv bag, wiped the caps with alcohol swabs and screwed the injection onto my line. when the sodium chloride injection started blossom with my bright red blood, i realized two things, i hadn’t closed my catheter AND i hadn’t cleared the air from the injection. i unscrewed the injection and tried again, but the plunger didn’t budge. i remembered the nurse who taught me how to use my powerline catheter saying, “don’t force it. call us,” so i called them. i got their voicemail. i left a message that said something like, “hi. i’m having a problem with my infusion and i really, really need someone to call me back as soon as possible, please.” this was said as if it was one gigantic, multisyllabic word. then i hung up and stared at the blood pushing through the purple polyurethane tube wondering what to do. what if the blood had coagulated in the line? i mean, there was a pain in my chest. i felt pretty sure that was from anxiety, but what if it wasn’t? what if i pushed it and sent a clot pulsing straight to my heart? what if i screwed up my line and had to have it replaced? should i just use the heparin injection (the anti-clotting agent)? i thought of my phone call options. not wanting to bother one of my best friends while she was at work, i called a family member and confessed that i had done something wrong and needed her help. she calmly asked me a few questions and talked me through what to do. i needed to sanitize the catheter again and screw on another injection of sodium chloride. i did that and forgot, again, to expel the air (there is a part of me that is completely ashamed that i forgot to tap out the air bubbles…). i started over and to my inexpressible relief, the liquid ran in, pushing back the blood in my line. i hooked up the heparin and injected that too. my brain had forgotten more than medical protocol. it had lost the ability to form complete thoughts, so in an exhausted, adrenalized cloud of gratitude, i thanked my nurse/angel and abruptly hung up. immediately after, dr. j’s staff called me back. “it’s okay,” i breathed heavily into the phone. “a friend who is a nurse talked me through it. thank you for calling me back though.” we awkwardly hung up.

diagram of a central venous catheter.

though the staff at my doctor’s office was incredibly thorough in their explanations and demonstration of how to give yourself an iv infusion at home, they only showed us how to do it once. burned out from travel, from surgery, from the fact that i soldiered on with only one functional arm to go buy shit instead of sleeping off the anesthesia, i wasn’t in the best position to comprehend the demonstration. my partner and i did take film and audio of the whole process, but i couldn’t sift through our hours of footage to find the troubleshooting section. much to my shock, i also couldn’t find any concise instructions online when i needed them. as i was frantically inputting various combinations into search engines, the gravity of this central line catheter dropped like a stone into my thoughts. i have a tube that gives something foreign, something external, a direct shot to my heart. there is room for mistakes, but how much room do i have? i need to get this right and i need to take the time to be sure that i’m fully prepared before i try to do anything new.

i spent the majority of the afternoon and evening nursing a migraine headache, trying to formulate a list of questions to ask the clinic infusion team. there are so many things i don’t know, and though i like to believe i have all-knowing superpowers, i don’t. i need help. i need answers and i need to get a grip before i do something really stupid.