March 30, 2012

i got out of bed today.

are you giving me the slow clap? well, speed that shit up. i feel like i deserve some real applause for dragging myself from my comfortable nest, making myself a cup of green tea (it helps detox, didn’t you know), shuffling into my office/infusion station and hooking myself up to an iv. this morning was the most difficult one so far. after i started my antibiotic drip, i gave up on being out of bed. i wheeled my friend (my grandma used to call her walker her friend, so i’m calling my iv pole my friend) back into the bedroom and hid under the covers. i set an alarm so that i wouldn’t oversleep the iv and end up with a tube full of blood. i writhed around for a while and woke up to a perfectly timed alarm. then, i writhed around some more.

it’s completely possible that my previous feelings of “this isn’t so bad” were because i was doing it wrong. in the last year, i’ve started to have some considerable problems with numbers. at first it was just switching them around a bit but the progression of my numbers issue was strange and significant. on many occasions now, i’ve read the clock wrong. this could seem like an understandable mistake if i were four-years-old and it was an analog clock. sadly, i misread digital clocks as well. i’m never an exact hour off the mark either. i’ve thought it was 7:12 when it was 8:40. i’ve set alarms for appointments and meetings that were after the actual meeting time. my number jumble is the only explanation i can come up with for how i ended up giving myself only one infusion of merepenem a day instead of two. though i looked at the written instructions at least 20 times, i saw the number two as one. now that i’ve stepped it up, i feel worse.

how to wash your long hair without getting your body wet. otherwise known as "the toad bath."

the lactated ringer’s, which are kind of like bags of saline with less sodium and added electrolytes, bring me a lot of relief. they help ease the migraines, rehydrate this body that can’t seem to retain any liquids and help my muscles to unwind a bit. there aren’t a whole lot of things that i have uncovered that actually make me feel better. i bought a heated foot bath with bubbles that are supposed to massage my feets (that was intentional). i haven’t taken it for a test drive yet, but i thought that it might help with relaxation and detoxification. i’m dry brushing my skin to help remove dead cells and toxins. because my central catheter insertion sites haven’t healed yet, i’m not able to do things that stretch my right shoulder, which puts a real damper on my ability to work out the knots in my muscles. i’m supporting my body the best that i can, but… this is painful and it’s just the beginning.

squirming around in bed, i was wishing for an acupuncturist/massage therapist who could come to my house every day, lay their healing hands on my aching body and feed me grapes. then the image of hedonismbot from futurama popped into my head. grapes aside, my desires aren’t hedonistic, but they’re also not realistic. i need to find some practical self-care that can make a dent in the pain i’m experiencing.

my fios is out for the second time in two days, which means that for the moment, i am without the internets. so in the meantime, i’m going to hand draw you a picture of myself bathing. don’t mind the stick figure obscenity.


the photographer in me cringes for everything in this photo, but the girl who feels pretty shitty right now is coming to grips with the fact that not everything about documenting this is going to be perfect. mmm... perfect.

i’m administering my first at-home infusion right now. i’ve jimmy rigged my tubing to one of the stringed instrument cradles on the wall and i’m watching the antibiotics drip down, making their way into my bloodstream.

i made a bumbling video of my solo voyage with this whole new system, though i can’t imagine i’d share it with anyone. it was a painful amateur hour, laden with alcohol swabs and uncomfortable silences where i studied the directions. with the instructional booklet in hand (or rather, on a stool next to my chair), i reconstituted the antibiotics, hooked the bag to the iv tubing, cleaned my line a billion times with alcohol wipes, flushed it with sodium chloride (which cleans the line), attached the iv tubing to my powerline and then adjusted the flow of the antibiotics. it was terrifying, really. i wished i wasn’t by myself. i was scared that i was doing it wrong, that i was going to get germs into my sterile field and give myself an infection. it’s not light-hearted work, patching together a series of liquids that essentially drain directly into your heart. some of the instructions didn’t seem to match up quite right with the supplies i had, but i muddled through. after the iv is finished, i’ll give my powerline another hit of the sodium chloride and follow it with some heparin, which helps prevent clots from forming in my catheter.

now i’m sitting on the couch, wishing i already had the iv pole so i could toddle into the kitchen and rustle up a snack, preferably a salty oat cookie from teaism, but i don’t have any of those. in fact, the only cookies in my house are these andean dream things that taste… healthy. if you didn’t notice already, i am a cookie monster. this is one of many cravings i’m going to have to push through. my partner and i have been working hard to develop some protocols that will support my body, immune system and detox in the best ways possible. i’ll get into that stuff at a later date. at this point, i’m waiting for my shower stool to arrive so that i can bathe properly. there are so many aspects of this treatment that i didn’t consider- like not being able to hop into the shower.

health wise, i felt okay going into today’s infusion, but halfway through the dripping medication, i’m getting a headache and my muscles are starting to tense up. i’m drinking water like i’ve been lost in a desert for weeks, but i still feel dehydrated. my glands feel like they’re swelling by the minute. and this, this is the easiest month. this three-week course of iv meropenem is aimed at killing the spirochetes that are in my bloodstream, free agents waiting to make a move into a colony or some organ tissue. it’s a broad spectrum antibiotic that’s also used to treat conditions like pneumonia.  yesterday i felt pretty awful- joint and muscle pain, my skin felt like delicate paper, and the muscles in my face felt brutalized. my gums started to swell and even my teeth hurt. i felt a hundred times better this morning, which doesn’t translate to anything close to 100%, but i was grateful for the relief. i wonder if this is going to be an every-other-day situation where i feel awful one day and better the next. i can get behind that.

i really, really need to go through all of the information that i received on tuesday and figure out how to create new systems to manage it all. everything with my treatment changes. new medications are added on certain days of certain cycles. on the days that i’m not administering iv antibiotics, i have to give myself infusions of lactated ringers, which are to help my body detox. i think that’s what they’re for anyway. see! i need to do some research and i need to do it fast so i can get a grip on what in the hell i’m doing and why i’m doing it. once i understand what all of this is for, i’m sure it won’t feel so scary. once i’ve sifted through all the footage of my four-hour long appointment with dr. j and his staff, i’ll come up with a nice blog entry about that experience and my very first, in-clinic iv infusion. honestly, it was so long and i was already so tired from the trip and the powerline surgery that i couldn’t make heads or tails of anything. i do feel that the information i received during that appointment is pretty vital to this entire treatment path, and so, i promise, that when i’ve got it sorted, i’ll write about it. for now, i’m going to spread some chocolate almond butter on those quinoa cookies and pretend i’m eating something that’s off the healthy menu.

oh p.s.- if i’m not answering your calls or responding to your texts, please accept my apologies. i’m so grateful for your love and your support. i appreciate the fact that you’re thinking of me. really, that means so much to me. i’m just overwhelmed right now and am having trouble keeping up with everything. i’m not intentionally ignoring you, i swear. i’m only trying to deal with all. of. this. ❤