organ grinder.

December 27, 2012

it’s apparently time for my annual “i’m keeping my gallbladder” tug-of-war. last january or february i was dealing with this same thing, needing to get a HIDA scan and an abdominal ultrasound done in order to determine whether or not my gallbladder was functional and healthy. in spite of my mental meltdown, owed to the difficulties of scheduling all of these massive tests (there were many tests, not just these two), the scan itself showed my gallbladder functioning at 60%, a fairly normal output. western medicine will argue that the gallbladder is vestigial, for the most part, though it plays a big role in digesting fats and managing bile production with the liver. i guess even in allopathic medicine, that seems like a big deal to me. in chinese medicine or almost any other non-western practice, the gallbladder is essential and, unless it’s diseased or terminally inflamed, you want to hold onto it.

but here’s the deal: in 40-50% of chronic lyme cases, the gallbladder is either diseased or, once the cystic colonies and biofilm have been eradicated from the tissue and the inflammation has subsided, the remaining tissue is withered and useless. i’d cite sources here, but i don’t have any. just the word of my doctor. to further complicate matters, emerging research shows a correlation between dysfunction of the sphincter of oddi and lyme disease. the sphincter of oddi plays a critical role in how bile and pancreatic fluids are distributed into the intestines. i don’t know much beyond that. my individual researching has been pathetic lately, so i listen to my doctor. i ask questions and generally comprehend his answers. up until now, i have deferred to his best judgement. i’ve surrendered to his expertise. i trust him implicitly (i say that a lot, huh?). i follow directions to the t (i’m going to look up the etymology of that saying). and i want… no, i need to keep all my organs. i believe i’m in that other 50-60%. i’m pretty sure my gallbladder is just fine the way it is.

it seems like this is a preemptive strike, pressing the eject organ button in order to push forward with my treatments. i know that the way i’ve described the situation sounds like we’re just playing the odds, the 50/50 chance that i might have a sick gallbladder. really, it’s not so simple. it’s not just a percentage. it’s that i exhibit a lot of the same symptoms as other chronic patients who have had a dysfunctional gb. but really, my diet has been off the tracks. my diet is dead in a ditch somewhere. and wherever it is that i abandoned it, it’s been all by itself for a long, long time. food and i have developed a tenuous relationship. i often have no appetite. i’m often too tired to prepare the kinds of whole foods that were my dietary staples. my fridge is filled with rotting, organic vegetables, purchased with the best of intentions. unfortunately, most of the time just looking at them makes my stomach turn. my compost dirt should be worth a small fortune for all of the amazing, clean foods that end up in there. i know all our woodland creatures dig it. butternut squash seems to be a favorite of someone’s. anyway, all of this is just to say that i think my gallbladder is fine. it’s my food choices and self-care that are in need of an overhaul.

during my physical exam last week with dr. j, my gallbladder was a bit enlarged and tender. of course, i’d been eating garbage and was also having intense menstrual cramps, which is kind of interesting. my last couple of moon cycles have been more like they were years ago. i’ve taken this as a sign that maybe my endocrine system is beginning to heal. anyway, i felt like there was a lot going on in my stomach that was unusual. the nausea and vomiting that i had during my last antibiotic treatment cycle could very well have been from the cold/flu i had during the entire round. i don’t generally have a ton of stomach issues. and if i adhere to my strict and ideal diet, i hardly have a problem. i didn’t push the issue with him. i agreed to do the testing and stated that i felt that my gallbladder was worth keeping but i didn’t protest too much. my mind is pretty much made up, no matter what the tests show. “can we biopsy it?” i asked. “you’d be poking a hole in a bag,” the doc replied. okay. so that’s out.

i have a plan. i’m phasing out the gluten, dairy, soy and other foods i know i shouldn’t eat and can’t digest. i’m going to try out a gallbladder cleanse (though i have yet to consult with one of my medical practitioner friends on how exactly this will work). and i’m going to refuse a potentially unnecessary abdominal surgery. i know that many people have them removed and find that they don’t have to make any adjustments to their lives. for whatever reason, i don’t feel like that’ll be my story if i allow it to be taken out. the good fats i rely on, like coconuts, avocados and fatty fishes, are, when i am eating right, my primary source of fat. i don’t eat processed or fried stuff (save blue potato chips, which i love but can’t often find at the stores around my house). if, after changing my diet and doing some cleanses, i’m still not progressing as i should, then i will revisit the issue. until then, all the parts that make up my body are staying right where they are.

this is my handiwork, my one armed dressing change

this is my handiwork, my solo, one-armed dressing change. once again, i can be almost autonomous.

if you’re trying to decide between a picc line and a hickman/central venous catheter, i’m going to lay out a few of the pros and cons. obviously, this is just my opinion. because i had the cvc for 8 months and i’ve only had the picc for two months, my bias is probably going to really shine through.

a picc line is generally easier to insert and remove. i have a cuffed picc line, which means there is an interior cuff that prevents it from being pulled out. getting a tunneled picc line (a cuffed one) is rare and it requires interventional radiology to place the line. unlike a regular picc line, i’ll also have to return to interventional radiology to have it removed. if you have a regular picc, a nurse or doctor can pull the line while you’re in the office and doesn’t require a trip to the hospital. that said, a regular picc line can be dislodged fairly easily. alternately, the cvc is pretty hard to pull out, in part because they are always tunneled lines. i chose to get a tunneled picc because i have two 20-30lb dogs that unpredictably race across me when i’m laying on the couch. it would be really easy for them to pull my line out, especially when i’m infusing and there’s an iv tube dangling in a potential dog pathway. if you’re not going to have your line for very long, typically a picc is the preferred delivery system. if you know that you’re going to be a bionic iv med recipient for a long time, i would definitely go with the cvc, the longer term solution.

the chest catheter or cvc, is more sturdily placed. however, if it were to somehow be pulled out, you’re in for a big problem. the line enters the subclavian artery, which is a very large blood vessel with heavy blood flow, lots of pressure and direct access to the heart. if the line were pulled out unexpectedly, massive bleeding could occur. the picc line enters through a much smaller vein near the elbow (which is still large for a vein). veins receive blood after it has travelled a distance from the heart and do not have nearly the same amounts of pressure that arteries do. if a picc is dislodged, it’s most likely not going to be catastrophic. the potential for clotting or a clogged line is significantly higher with a picc than a cvc. though a clogged line feels panic inducing, the problem is general resolved by a trip to the hospital to have cathflo administered to clear the line. in some cases, they may need to remove the line.

you need to watch for signs of infection with both devices. there are two types of infections that can occur, one of the skin and one in the line. a skin infection can occur easily, especially if you’re chemically sensitive and are using harsh chemicals and adhesives to clean and dress the site. because your skin isn’t going to get a lot of air while you have either a picc or a cvc, if it’s irritated and you’re not working to resolve the redness and irritation, that can result in open wounds. any open wound makes you more susceptible to an infection. a skin infection, which does occur more frequently with picc lines, can lead to a line infection. speaking from experience, you do not want either of these, but you really don’t want an infection in your line. though i don’t know if bacteria entered my body through my cvc, i ended up with a blood infection that led to sepsis. this is the reason that i had my cvc removed and a picc line put in. signs of infection to look out for are: redness or swelling at the site, discharge from the site (after it has healed) and a fever. i had only one of these symptoms, a fever, which came and went, making it much harder for me to recognize that i had a rapidly progressing infection. i ended up in the hospital for a week with an experience that i wouldn’t wish on anyone.

so… if you suspect you may have any kind of infection, err on the side of caution and have a medical professional check you out. and really, preventative measures are the best defense. try to manage your insertion site before it becomes a problem. because they aren’t as caustic, i use betadine swabs instead of clorhexadine to clean my site. i wash that off with sterile water before putting on a biopatch and a foam statlock (the foam adhesive isn’t nearly as abrasive as a regular statlock’s). i change the types of window dressings that i use and sometimes i give my skin a very careful breather by covering it with 4×4 gauze and paper tape. i can’t recommend doing this though because it does leave you vulnerable to bacteria and infection. check with your doctor about safe protocols on how to give your skin a break if it does become irritated or painful.

i have to say, i hate this picc line. compared to a central venous catheter that enters through the chest, just below the clavicle, this line dangling from my left arm sucks. there was an adjustment period for the cvc (in my chest), but after a little while, i learned how to work around most of the difficulties i’d been having. showering was still a pain and often ended with a somewhat wet dressing, which meant that i had to change the dressing after the shower. during the summer, this wasn’t such a problem because every time i sweat, i had to swap out the old for the new. i live either in a humid forest or a sweltering concrete jungle. there was no shortage of sweat and i was often changing dressings every other day.

the picc line is easier to cover in the shower. i finally purchased a shower sleeve, a picc line arm protector from drycorp. it’s alright, but not totally airtight. if you bend your arm, which you’re probably going to do, it allows some water in. it’s also difficult to get on and cuts off the circulation to my hand. however, it’s a preferred alternative to using glad press’n seal and tape. there isn’t a cvc shower cover. if you have that, you either birdbath it or make a breast plate of saran wrap to try to seal it up so that water can’t get in.

i’m constantly irritated by my picc line. i can’t easily access it during the colder months because i’m wearing at least one layer with long sleeves. it doesn’t actually fit under shirts with tighter sleeves. the thumb clamp that keeps the line closed seems to pop open more frequently than my cvc did. this is just because the line sees more action, more movement and general jostling can open the clamp. the site on my arm is itchier than the site on my chest was. maybe that’s because of the dry weather and dry skin? that’s my best guess.

because of it’s location, the picc line in the arm requires more frequent dressing changes and unlike the chest catheter, it’s pretty much a two-person job. after a few months with the cvc, i was able to do my own dressing changes in front of a mirror. i prefer to use a tegaderm dressing to cover the insertion site because it’s gentler on the skin. unfortunately, the tegaderm isn’t as durable as other dressings and lately i’ve been using a sorbaview window dressing instead. the adhesive is stronger, which on one hand is great because the dressing stays in place for a longer duration. on the other hand, it’s more painful to take off, pulling out hairs and pulling off skin when it’s removed. the photo attached to this post is of my first attempt at changing my own picc dressing. i didn’t have anyone around to swap it out and thankfully, i was successful! it took me a long time to do it and i still couldn’t change the extension line (the extra tubing that allows me to access the line and do my own infusions). i was totally proud managing to change my own dressing. this was, of course, after 10 months of dealing with dressing changes in general, so i’ve had a lot of practice. no matter what device you’re changing the dressing on, be sure to use sterile procedure, taking care to wash your hands thoroughly and to clean the area surrounding where you place your sterile field.

i probably have a lot more to say about picc v. cvc, but i think this covers general bases. like i said, if you’re going to have the line for longer than a few months, i highly recommend going with a central venous catheter in your chest over a picc line in your arm. in the end, you should do your own research, figure out what you think you’ll feel more comfortable with and talk it over with your doctor. some practitioners don’t offer you a choice in which delivery method you’d prefer, but mine did. i’m glad that i had the cvc for those eight months and every time i flush my line or change my shirt, i long for that tube dangling from my clavicle. it felt so much less obtrusive to me. hopefully, my picc and i won’t be acquainted for nearly as long. and, because i have a macabre side, i have my old powerline cvc in a jar, a souvenir of my time with it. it’s not like i miss it that much.

recently i had a disappointing and infuriating appointment with a doctor i hoped would be my new primary care physician. having realized that, without an advocate inside the medical community of my town, i could very easily find myself in the same situation (not being treated while hospitalized), i heeded a friend’s recommendation and set up an intake appointment. “bring a list of your current medications,” every doctor’s secretary will tell you. but when you show up with two pages, one of allopathic prescriptions and the other of herbs and supplements, you’re bound to hit resistance. at this appointment, i’m not sure we even made it past the drug sheets.

“why are you taking all of these medications? … i mean, this is excessive. this is crazy. you shouldn’t be taking all of this,” the new doctor said as he ran a pen down a column of western meds.

” i have lyme disease, bartonella and babesiosis…”

“bahbay-what?” he asked.

“it’s a tick-borne illness. babesia. anyway, i have those tick-borne illnesses as well as a host of autoimmune disease.”

“how do you know? did you actually get a test for these? and who is prescribing all of these medications?”

“yes, i’ve had positive serology, though we haven’t tested them in awhile. beacause i’m still symptomatic and the test are unreliable, there’s really no reason to run the tests again. and my lyme doctor has taken point on my case and has prescribed most of those medications.”

he pointed out a few medications that he called “the same thing,” and “redundant.” i gave him the reasons for the meds and how they differed, but i’m pretty sure he heard charlie brown’s mother instead of my distinct, carefully chosen words.

it went on like this, just back-and-forth, for the duration of my appointment. i responded calmly to his dubious questions. he told me that in the most extreme cases of lyme disease, a two-month course of iv antibiotic medications might be necessary. he repeatedly asked me questions about my lyme doctor, including wether or not i pay him in cash and if i ever got a second opinion. he was certain i was handing over fistfuls of cash to a snake oil salesman. to him i was just a desperate, sick person who, after unsuccessful attempts to treat my autoimmune diseases, drank the kool-aid and was willing to believe anything that could explain my pain and problems. “i’m getting better,” i said. “after fourteen-something years of getting progressively worse, of being treated like i’m crazy for having symptoms that didn’t fit an autoimmune disease picture, i am finally being treated and i’m finally getting better. i’ve spent my entire adult life sick and disabled and now i’m healing.” he told me that my improved health could be a “placebo effect from the antibiotics.”

when i vented about this, a friend, an acupuncturist and herbalist, had this to say:

ask him if his cancer was going away if he would want to know of it was placebo effect! placebo is a beautiful powerful thing that would be better than any drug if we could patent it. prescribe it and sell it. any doctor that dismisses any patient improvement based on reason. percieved treatment. drug label. usage and documentation and ignores a person in front of them is a bad doctor.

i don’t believe that this is a placebo effect, but i love what my friend had to say about it.

during my appointment, i held medical court with this doctor. “i’m very medically educated,” i told him. “i do research. i go to conferences. i try to stay on the edge of this. i’m not crazy or foolish, no more than anyone else. i understand that you’re skeptical. you see one doctor overseeing my treatment with no one looking over his shoulder, but i’m not being taken advantage of. there’s no second opinion that can affirm the efficacy of my treatment plan because there’s not really anyone who could understand it yet. my lyme doctor is one of the best in the world. he’s an expert and i trust him implicitly. i can give you scientifically proved articles on this if you’d like to learn more about it.” he did not want my research. why would he? he was all-knowing.

i drove away from that appointment fuming, quietly raging. there were so many aspects of this appointment that were all sorts of wrong, but what really got under my skin was his unwillingness to cop to not actually knowing much about tick-borne illnesses. i find this to be highly problematic, especially considering where i live- in a lyme endemic area. how many people are coming to him, complaining of severe symptoms the cause of which tests cannot decipher, and he just directs them to a diagnosis that only partially explains their experience. how many people is he failing to diagnose? if he’s not taking kickbacks from big pharma or being sued by insurance companies for over-diagnosing lyme disease, then why be so adamantly opposed to learning more about it? why be a hypocrite who swore to the hippocratic oath?

i want to never stop learning. i don’t ever want to think that the answers i have are enough. the luddite in me is only looking for a simpler life, a craftswoman who wants to use her hands to provide a living. i want to stay teachable forever.

a cabin in the woods.

December 12, 2012

i have secret fantasies of being a luddite.

there’s a residual part of me, blame it on hippie parents, that longs for a cottage in the woods, that rests on the edge of an open field. here, i grow my own food, start chopping wood in april to make sure the stores are enough to last the winter, and i ferment anything that can be pickled. i write with a pen and paper. i don’t worry when words slip from my fingers. i know they’ll be back. all my books are stacked in vertical piles in my living room, small flags jutting out from closed pages, marking words i found too beautiful to not rediscover. i paint pictures with soft colored inks, dyes made from carrots, beets and bugs. i go for long walks and pick wild blueberries, my fingers already stained purple from plucking mulberries from trees on the deer path i follow. i batten down the hatches during the dark of winter’s short days, wrap myself in my great-grandfather’s hudson bay blanket and imagine a world where barters were made with beaver pelts. i make music in front of the fireplace, pretend my animals are my bandmates. i sing songs i can’t quite remember, making up lyrics as i go. i grow herbs along the east side of the house. i paw through the woods in search of mushrooms and medicine. i don’t swallow handfuls of drugs and supplements. i make tinctures. i soothe the red welts of mosquito bites with bentonite clay. i don’t stare lovingly at my collection of natural remedies because they aren’t novel. they’re how i fix what ails. and not much ails me.

luddite me isn’t worried about my lack of writing. luddite me would rather have an inspired piece than writing born from the tedium of feeling an obligation to write.

i’m done with my latest treatment cycle, a short but powerful course set to attack biofilm. after two months of being off course, i anticipated an excruciating reunion with my tactical team of antibiotics and herbs. it was not the bloody battle i expected, but it wasn’t a walk in the park either. it would have been even smoother had i not picked up a garden variety cold. i’ve often said that i’m comfortable (that’s really not the right word…) with my typical daily aches, pains and problems, but as soon as you drop something unexpected, like a cold, on top of the pile, i collapse. it’s the last straw, the one that pushes me over the edge into uncharacteristic complaining and whining.

i think i’ve been experiencing symptoms of both acute and chronic lyme for awhile now. this last treatment will (hopefully) have knocked out the acute infestation of lyme, bartonella and babesia bugs so i can get back to the business of breaking up bacterial colonies. my legs have been weak, numb and stiff. the soles of my feet and my palms have been swollen and pained. during my heavy iv cycle, i flipped between insomnia and hypersomnia. both states were stressful. when i was overly sleepy, i felt like i should be awake and doing something, anything but sleeping. when i couldn’t sleep, i fretted about how hard the next day would be if i didn’t get enough rest. i was nauseated the whole time, with a few days of moderately severe stomach issues. post treatment, my skin/central pain has kicked up a few notches and i’m incredibly itchy. this is, in all likelihood, because of massive die-off and an overly toxic system. did i mention that i’ve let my detox protocols slip a bit? and my diet is off the tracks.

i’m still running low, trying to find both energy and motivation to tackle some of the tasks on my ever-expanding list of things to do. i’d love to say that i’m making a dent in it, but for every thing i finish, i add four more to standby. that’s the way life goes, i know, i’m just not making good progress on things that are actually vital. for example, i’m almost out of saline flushes, but my regular pharmacy doesn’t carry them. i’ve had a prescription at another pharmacy for weeks, but haven’t stopped to get the flushes. and the alternate pharmacy is literally across the street from my primary one. i feel immobilized by the things i need to do and guilty for napping, watching t.v., and playing the ukulele. sometimes i convince myself to simply accept that i’m not doing anything productive. i decide that if my body says “sleep,” that the only justice i can do my healing process is to sleep. since i had sepsis, my anxiety levels have been elevated. it doesn’t feel like fear. it feels like a symptom that’s resurfaced because of the wild spirochetes and protozoa in my body, the biofilm that was opened and not closed for six weeks. no matter the cause, i’m anxious and unwilling to medicate to treat it. smart, i know.

i’m putting a cap on this unfinished piece. it’s time for a one-song dance party.