benched.

April 24, 2012

i have seldom felt as incredibly unsexy as i do these days. maybe it’s because i’ve been exclusively wearing ripped-up t-shirts that allow my central line some wiggle room while i infuse (actually, i think those are kinda hot). maybe it’s that my sedentary lifestyle has rendered my pants too small to wear comfortably. i’ve revisited some out-of-style jeans to house my burgeoning, new belly. maybe it’s less the poorly-cut jeans than it is the onslaught of sweatpants i parade out each day. in part, it’s got to be the fact that my hair is unwashed five out of seven days of the week and that my natural, crystal deodorant doesn’t really hold up to my wildly vascillating body temperatures. but mostly, right now, it’s the bright red rash that has been taking over my body. i know, all of these things sound so appealing. how i could end up feeling like a plague-carrying hobo is a total mystery.

last week i started new a iv antibiotic protocol to kill the babesia and the lyme. it knocked me on my ass. the physical blowback was intense and exhausting. the day after the new meds, my entire body, eyeballs to toes, was in a world of pain. my eyes were so inflamed the following day that i could hardly keep them open. i had a red mask around my eyes and my lips were bright and swollen. then, a day or so later, a rash started to peep out on my thighs. i sent some pictures to my medical team, just to keep them abreast of the new symptom. i was told to keep a close eye on it because while it could be just a part of the herxheimer reaction, it could also be a potentially deadly skin disease, stevens-johnson syndrome,  caused by one of my medications. my infusion nurse told me to keep them up-to-date on what was happening. within a few days, the red freckling had colonized the better portion of my upper body. on sunday, i called the 24-hour line for iv patients and talked through my symptoms with the physician’s assistant. she instructed me to stop taking the potentially offending medication and to hold off on taking any oral or iv antibiotics or anti-malarial medications until they had a chance to really review the pictures i’d been sending them. i’ve been benched from my treatments until the rash goes away.

that beautiful photo to the left is how it looked two days ago. today, having not taken any antibiotics for three days, the redness seems to finally be subsiding. my hope is that when i tumble out of bed tomorrow morning and scan my disease addled body, that the rash will be gone and i can get off the bench and back in the game. i like having a game plan. i rely on relatively strict scheduling as it’s the only real structure i have in my life right now. it doesn’t feel beneficial to stop in the middle of a round of meds even though i know that with all the variables in my case, holding off is the best play. if the rash is simply my body’s reaction to the medications doing their jobs, then i’m all for it. even though i’ve had an extra day off from my infusions, i still feel profoundly exhausted, stiff, sore and achey. these are all good indications that i’m on track. i’ve been infusing lactated ringer’s solution every day, taking baths in epsom salts, using aroma therapy, drinking tons of lemon water, shoveling handfuls of chlorella tablets into my mouth, and trying to utilize as many detoxification techniques as i can. thanks to an incredibly generous gift from a friend, i have a fridge full of blueprint cleanse green juices to help my body flush the toxins out of my system. not only are the juices delicious, but they help alkalize the body and help me to make healthy dietary choices when i don’t have the energy to make myself food or fresh juice.

if i get cleared to get back on the field tomorrow, i’ll start back up with my oral antibiotics and iv antibiotics, and will add in my drug nemesis, mepron. god, i hate that yellow anti-malarial paint more than i’ve ever hated any other medication. i just want to get this over with.

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since i was diagnosed with lyme, bartonella and babesiosis, i have had to open my wallet wider than it goes, borrow money, ask for financial help and scrape together the resources to get the treatments i believe will lead to a day that i can look back and say, “remember when…” no matter if you treat with allopathic/western medicine, homeopathic/alternative medicine or you go an integrative route, the costs of treating these diseases are unbelievable. i think one of the most unfortunate aspects of unattainable medical care due to financial standing, is that the people who do not have the means to pay for treatment, grow progressively sicker. the longer the disease goes untreated often determines the level of devastation we experience, rendering many of us unable to work and to earn enough money to cover our basic costs of living, let alone the astronomical costs of medical care, medications and supplements. i can’t even bring myself to sift through my receipts and come up with a total of how much i spend on my treatments.

a few days ago, i paid $300 for two meds that my insurance refused to cover. it seems like every couple of days i’m ordering at least one supplement to support my body as i move through this. nothing here is cheap. and the actual cost of seeing any seasoned lyme doctor? that knocks the majority of the affected population out of the running. if you can see a lyme literate doctor and you need intravenous antibiotics, you’ll have to shell out more cash, which for many patients with late-stage lyme is the only way to kill the infection once it has penetrated the brain. that cumulative expense is often tens of thousands of dollars. my last round of iv antibiotics, just for the infusion meds, was about $6000. my insurance won’t even entertain the idea of covering those drugs, so i’m left to pay entirely out-of-pocket. these sky high bills are ridiculous and prevent the majority lyme patients from getting the care they need. who can afford this? it’s a horrible, unjust system that provides the hope of a lyme-free life only to those who are monetarily endowed or know someone who is and is willing to share the wealth. if you’re poor, uninsured or underinsured, don’t get chronic lyme because you won’t be able to afford the high price of getting well. it’s sick, sad, infuriating and an issue that we have to address. we should never become comfortable with the economic disparity that divides our world into to two radically different classes. the haves get medical attention and the have-nots get nothing but the misery of a progressively more destructive disease.

i’m want to start my own “it gets better… or does it?” style campaign. i want to create a viral video that sparks hundreds of video responses of people talking about their experiences with tick-borne diseases, how they have dealt with it, and how they’re doing now. it’ll be a grassroots, guerrilla style, mass psa for lyme disease, raising awareness by telling our stories, putting faces to the real and devastating effect that these diseases have had on our lives. let’s use the internet for all it offers, a platform for ordinary and extraordinary people to share real information, untouched by the control and censorship of mainstream news, tv and print. let’s get our stories out there, make a chorus of voices that can resonate with people, help change and eliminate the suffering caused by lyme disease, bartonella, babesiosis, anaplasmosis, and all the other zoonotic, tick-borne diseases. let’s make ourselves visible so that the cdc, the idsa panel on lyme disease, the insurance companies and the chronic lyme naysayers can no longer deny that lyme is fast approaching epidemic proportions and that it needs to be appropriately treated. we need to make it so that our doctors can practice medicine without fear that they will lose their licences. we need to be visible, valued and we need to receive the medical attention that we so deserve.

just now, an actual ant crawled up the inside of my pant leg… i have literal ants in my pants.

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?

it’s a miracle i can type.

i’ve been curled up and making mewing noises for the past six hours. my arms and legs are swollen, mottled, pained and grotesque. i’m getting a migraine headache, have puffy eyes that i’d like to carve out of my face. my

this is april's schedule for new medications and meds that change. since i couldn't seem to get things right last month, i figured my system needed to be clearer. also, i nerd out on organizing.

inner ears feel like someone placed a tiny stretcher in there and we’re trying to expand the canal. sometimes i get shooting pains that feel like the detached ball of a mace cruising at warp speed from one major artery to the next. i’ve literally been moving my legs non-stop for the past six hours. i can’t sleep. i can’t eat. i can’t lie still. here it is, the moment i’ve been dreading and day one is casting a shadow on day two.

anyone have suggestions on how to stay in the moment when the moment is physically excruciating? honestly, i couldn’t meditate my way out of any of this.

i started my course of iv meropenem followed by the iv clindamycin this morning. in a few minutes, i’ll need to start administering my second doses of each. i also am taking septra-ds twice today. this is the slow start of the babesia month. and this is all i can manage to write down today. i have a thick-pile, wool rug that’s begging me to go fetal and cry on it.

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.

on the offensive.

April 8, 2012

this does get informative. i swear. and the information could be incredibly useful to people with picc lines and cvcs. that said…

i want to kick this post off with, “so it’s easter/passover, bitches,” but i’m not sure why. sometimes i fear that if i really lace this blog with my inner dialogue that i will alienate all the people who don’t know me, some who do, and damage the whole reason i started this in the first place. why did i start this? because i wanted to help people to navigate a messy disease. i also wanted a place to put my thoughts down, document my narrative of my process. i guess telling you that i plan on decorating easter eggs with boobs and dicks on them isn’t really relevant to my lyme disease, but that’s what’s on my agenda today. has my eight-year-old boy humor not surfaced yet? oh. well, now you know. i think bathroom humor is hilarious, and in less than a month, i’ll turn 32 (good lord, i just wrote 35 instead of 32. this is what i’m talking about when i refer to my numbers problem. i have no desire whatsoever to add three years onto my age). in regard to my lowbrow musings, i’ll probably find them funny until i have an unruly child who giggles every time she hears the word, “nuts.” more likely i’ll laugh along with her and create a learning game out of innuendos and double entendres. aww, i am already a terrible fake parent.

with reservation, i’m writing that i feel pretty good. the past three days haven’t been so bad and i’ve been able to participate in life with a bit more fervor than lying prostrate on my floor. this means that three days ago i went to target, the grocery store and the vet’s office all in one day. that’s amazing. i guess i didn’t do too much the past couple of days, but i did manage to stretch out some of my incredibly tense muscles, which helped me immeasurably. also, i think that adding in the binders to help catch the spirochete decimation has been really beneficial. as soon as i started throwing back handfuls of chlorella, the herxing eased. now i’m on a break from my iv antibiotics until tuesday, when i see dr. j again and get a different infusion and the instructions for the next four weeks. i anticipate  a month of hell, as this round is also targeting my babesia, and the medication i take for that, mepron, makes  me want to throw myself off of a cliff. or hide in the dark closet under my stairs (which i would totally do if i didn’t believe that it was a spider den). or take a forbidden bath, submersing myself up to the bottom of my nose. central venous catheter insertion site be damned! dr. j didn’t want me taking the muscle relaxers i was taking because they can interrupt the neurological balancing and calming we’ve been working towards. he also wanted me to cut back on pain medication, not because i was taking it in excess, but because it can potentially interfere with normal dopamine and serotonin production. this has left me with no pharmaceutical relief for my pain and myalgia, which has been a consistent challenge, one i’m particularly concerned about with the next round of treatment.

i’ve been having trouble sleeping for the past week. night sweats and muscle pains have been waking me up. i’ve been a bit nauseated and my appetite has been somewhat suppressed. other unpleasantries of being on four antibiotics include what i’m going to deem unmentionable (oooh, another game to play with my fictitious, future child- paradoxical words and phrases!). i will say that when you’re on as many antibiotics as i am, you don’t forget to eat probiotics like tic-tacs. if, by chance, you do forget, you’re instantly reminded in a highly unfortunate manner. i have gotten used to giving myself infusions and feel like a pro, until i encounter a different device, like say a new set of iv tubing that has multiple ports. air bubbles love to hide in these extra ports and i’m still working out a more efficient means of extracting them. though i have learned that it takes a significant amount of air to produce an air embolism, it’s still frightening.

i immediately started reacting to the dressing (the bandages used to cover the area where the catheter enters my chest) and chemicals used to clean the wound and my skin. this is notable, considering that a large number of patients experience this problem and solutions weren’t readily offered by the medical staff. it was briefly mentioned in my appointment that this could happen, but we weren’t given alternative techniques or supplies. lucky for me (a miracle, actually), one of my best friends is a nurse who specializes in this and has saved my skin from certain disaster. thanks to skype and her expertise,  she has taken my partner (because someone else needs to do your dressing change, unless you’re really talented at working backwards in a mirror) and me through a series of different dressing and cleaning agents until we arrived at a working solution. what i’m using now is betadine to cleanse my skin and rinsing off the betadine with a sterile gauze 4×4 and sterile water. i use a biopatch (placed over the insertion site. the line runs through it), a statlock that doesn’t tear skin off when i remove it (honestly, it was ripping my skin off), and a giant tagaderm patch. the danger of not finding a solution for sensitive skin early on in your treatment is that it’s really easy to get a skin infection and really difficult to get rid of it. once the skin is infected, the infection can potentially move into the line and then it’s a total disaster. every picc/cvc patient should have a friend as incredibly, caring and helpful as mine.

tomorrow i make the trek back to d.c. to see dr. j. today, it’s naughty easter egg time!

if this weekend is up your religious alley, i hope you have an amazing celebration. i mean that genuinely, even though i thought about calling you bitches in the beginning. i didn’t actually mean you were bitches. honestly.

happy passover, or easter, or long weekend!

addendum (an hour later): my mom just read this and said, “if i decorate them, they probably won’t have boobs OR dicks on them.”

skinny legs and all.

April 5, 2012

i vacuumed today. gold star for me!

on the real, i’m dragging pretty hard.

when i stand for more than a minute, it feels like blood is accumulating in my legs. they start to turn purplish, red and splotchy. it’s very sexy. in fact, when i’m sitting on my shower stool, i get a pretty up close and personal view of my legs. i get to see how grotesque they become when there’s pressure or weight on them. at some point during my last shower (and i can count on my fingers how many times i’ve bathed/showered since i got my central line placed. don’t judge. it’s quite an ordeal), i realized that it was actually quite painful, so i moved all the products from the little marble shelf in the shower and then tried to prop my feet up. ha! how smart of me- a foot stool to accompany my shower stool. shortly after my victory, i realized that i was blasting water out into the bathroom. genius fail.

when i saw my first lyme literate doctor, she revealed to me that she also had lyme and co-infections. she talked about some of the treatments she was doing and discussed some of the fallout that would happen during treatment. she lifted the bottom of one of her pant legs, unveiling a swollen, purple ankle. “when the spirochetes die,” she said, “they pool in the legs and feet.” so there it is, the reason for my plum-colored, skinny legs.

a friend wrote me and asked if i was taking “binders.” i was not. the binders function similarly to chelation, but instead of bonding to heavy metals in the body, they bond to the dead spirochetes. once linked, the body is better able to get rid of them. she gave me all this really useful information on what natural substances bind together with the toxic bugs to help excrete them from your system. i know, excrete was kinda a gross word choice, but my brain refused to find a synonym and i’m too tired to look one up. anyhow, the binders that i just started using are apple pectin, lemon water and organic broken cell wall chlorella, a single cell algae that’s hailed as one of the best supplements you can give your body. here’s a link to a site that lists some of the benefits of chlorella. other things you can try to help ease the herxing (the reaction to the massive bug die-off) are micro silica, beta sitosterol, and a duo of calcium bentonite clay and fiber. i haven’t ingested bentonite clay yet, but i have made a paste of it and put it on my feet, which is supposed to help pull toxins from the body. i’ve used this a lot for bug bites and bee stings (to which i am allergic, the stings, not the clay). there are a lot of things you can do to help your body more effectively detox, but these suggestions came from my friend, h, and i’m grateful for her willingness to share her experience with me.

personally, i believe that this is the only way that most of us can get through this, by sharing our knowledge and experiences with others. i need the benefit of what you’ve learned so that i’m armed with information i need to fight this disease and to find my way to wellness. on that note, i want to send some serious, big love to my friend, s, who just had her picc line placed today. we’ve been on bloodier battlefields. we came away from those stronger, smarter, more loving, more honest, more open and more teachable. i believe that we’re going to get through this one too. you are not alone, buddy. ❤

house of cards.

April 1, 2012

when i was in junior high, or maybe just a freshman in high school, i ended up with a stack of details magazine back issues. this, you should know, was back when details was edgy and cool, at least for a kid my age. i used to pour over every word in those magazines, saying that someday i was going to take the green tortoise bus across country (upon looking at their website, they are definitely not providing the same kind of tours). i had dreams of this bus being like ken kesey‘s bus, further. i thought i’d be smoking pot, dropping hallucinogens and bathing naked in hot springs with strangers. i thought i’d be my own merry prankster. okay, so hippie kid dreams aside, there was an article in one of the magazines that listed the top ten worst diseases to die from. the only one i remember from that list was scleroderma, a hardening of the skin that could cause paralysis and organ failure. this list was sensationalistic, but in 1999 when i was diagnosed with scleroderma as a component of my mixed connective tissue disease, i instantly remembered that page out of details.

last night, while feeling awful and laying on the couch watching back-to-back episodes of one of those one season crime dramas, i started to pay a bit of attention to the rough, patchy areas on my fingers. during the winter, i assumed that my reynaud’s, which expands and contracts the vessels in my fingers, was to blame for the painful splits down the center of my finger pads. my right hand started to look like a piece of shattered glass. i figured that as the temperatures warmed and my reynaud’s became less pronounced, that my hands would heal. i was wrong. instead of healing up, the skin on my fingers began to harden. then i remembered i have scleroderma. scleroderma is an autoimmune disease in which the body produces excess collagen, causing areas of the skin and potentially internal organs, to thicken, harden and render the site of attack, unmovable. i haven’t had any scleroderma like symptoms in a while and in my file it’s noted that i may have CREST syndrome, a subtype of scleroderma that can affect the skin on arms, legs, hands, feet and face and sometimes have organ involvement including digestive issues, and heart and lung problems. there are five primary components of this type of scleroderma and i’m currently showing three of these: reynaud’s, skin hardening and calcinosis in my fingers.

enter the panic. what if my skin stays like this permanently? what if it gets worse? what if it starts to look like these horrible images on google? what if i lose my mobility in my hands? but the real question, the one i started to ask once i stopped looking at horrific pictures of the worst cases of scleroderma was, how do i get treatment for this while i’m undergoing treatment for my lyme and coinfections? my rheumatologists don’t understand anything about this iv antibiotic protocol. one of them doesn’t really believe in chronic lyme, though he’s curious to see if these treatments work for me. i’m hoping that once i get well, i’m able to be the case study that changes his opinion. i’ve written a letter to dr. j’s staff, asking how to proceed and i’ll give my rheumatologist in iowa a call tomorrow, but i don’t know what i’m going to be able to do about it. slather my hands with shea butter and vitamin e oil? that seems my only current choice of action.

being chronically ill, infected with a bunch of tick-borne diseases and having a host of autoimmune diseases, isn’t a path i recommend going down. there’s a lot of branches, debris, and beasts along the road. all i’ve done, is uncovered another roadblock that i have to find a way to push through. where’s that damn bus when you need it? right about now, i could sure use something that changes my perceptions of reality.