For Bernie on his Fifth Birthday

This is a piece I wrote about my son Bernie back in September, around the time that he turned five. Writing this (and sharing it on Facebook) was a very cathartic experience for me. It helped me process some emotions and feel less isolated in my experience parenting a kid with epilepsy.

This month marks our two year anniversary of living with epilepsy and it's been without a doubt the hardest two years of my life. But there's also been a lot of joy that isn't captured in this writing. Both our kids are hilarious and make us laugh every day. I'll have to capture that in a subsequent piece!

Originally written 9/6/2024

Our kitchen is covered in a sheen of oil. So is our five year old’s booster seat and placemat. These things are easy to wipe down when they get gross enough; the numerous shirts and shorts with oil stains are slightly trickier. When I think of the moms I’ve seen in countless laundry detergent commercials over my lifetime, I wonder if getting those stains out really is as satisfying as they make it look. I’ve never had the energy to bother.

keto lyfe

Our son, Bernie, follows a strict high fat, low carb diet – the ketogenic diet. The oil is omnipresent. If it seems insane to put a little kid on a restrictive diet, you’re right. But for Bernie, every meal he eats needs to be 90% fat in order to maintain a state of ketosis to prevent seizures. They’re not entirely sure how it works, but there’s been some research that burning fat instead of glucose increases the neurotransmitter GABA, which balances out the neurotransmitters that cause seizures. For some unknown reason Bernie has an imbalance.

Bernie had his first seizures in January of 2023. The day before, I went to my first doctor’s appointment for my second pregnancy. I had been sick and miserable, but was happy to learn that I didn’t have twins (phew) and that the pregnancy seemed healthy. Bernie has autism, and had spent the previous year working one on one with a therapist to develop his language skills. I still carried some guilt that his speech delay had been my fault, one of the many reasons I now wish I had gone to a therapist sooner. My OBGYN set me at ease and I went home finally a little excited to be pregnant.

The next day Bernie stayed home from daycare with a slight fever. After putting him down for his nap, I noticed him jerk unresponsively just as I was about to leave the room. I had never seen a seizure before – the only association I had with epilepsy was an inside joke with my friends twenty years earlier in which we pretended to seize after seeing flashing lights. I spent several minutes failing to get his attention, then starting panicking when he immediately fell asleep afterwards (a very common side effect of a tonic clonic seizure). The doctor in the ER concluded it was likely a febrile seizure and assured us this was fairly common for sick kids. Two weeks later he had more tonic clonics and the doctors were less reassuring. The earliest neurology appointment we could get was almost a month away. While we waited, we began noticing strange movements: Bernie’s hands would unexpectedly fly up and eyes roll back for an instant, and then he’d go back to what he was doing. These events, called myoclonic jerks, would become an unwelcome part of our daily lives for the coming year.

waiting for an MRI

The name epilepsy was coined by the Greeks; it is derived from the Greek word meaning “to seize, possess or afflict”. Seizures were believed to be the work of evil spirits until the philosopher/physician Hippocrates proposed that the condition came from natural as opposed to supernatural causes. I can appreciate the misconception. Although death from a seizure itself is rare, watching one certainly evokes death, dying, general “otherworldly”-ness. It’s terrifying. Even a year into this, when we noticed our son seizing on the monitor, my husband and I ran into his room and tried to shake him awake instead of keeping him on his side and comfortable like you’re supposed to. The urge to prove that the person seizing is still alive can take power over logic.

After receiving an epilepsy diagnosis (he has Myoclonic Atonic Epilepsy) on Valentine’s day 2023, we started Bernie on Keppra, one of the most common anti-seizure drugs. We saw no improvement. Six weeks later we started him on Depakote, a mood stabilizer often used to treat bipolar disorder. This drug appeared much more effective, and for the next three months we thought we were in the clear. In June his myoclonics flared up again after a trip to the mountains, illuminating how thinly controlled his epilepsy actually was. We spent the final six weeks of my pregnancy scrambling for more control, and finally got it (by increasing Depakote) the week our second son (Ralphie) was born.

big brother energy!

That month we got off the waitlist at Children’s hospital in Denver. In addition to now having a designated epileptologist, we also had access to the hospital’s Keto Clinic – a staff focused on the diet for seizure control. Our epileptologist suggested we experiment with the drugs a little more before trying keto, so we spent the next few months increasing depakote and navigating seizure spikes and medication side effects. Bernie started losing muscle tone in his legs and arms. He began falling more and seemed constantly off balance. As parents, we were gradually losing our sense of control again. The sleep deprivation from having a newborn didn’t help.

In October of 2023 we hit our breaking point. The month started with COVID and ended with another respiratory infection. Both illnesses caused Bernie to be completely depleted for a week. Dan and I decided it was finally time to try keto, though we wanted to wait until after our Christmas travels to start. The day after Bernie went back to school from his sickness, seizures spiked again. We decided to start after Thanksgiving.

One of the hardest parts of navigating an uncontrolled seizure disorder is the waiting (Tom Petty agrees). When you try a new drug or treatment, it usually takes a month minimally before everyone can agree it’s not working. That month is excruciating, especially when there are side effects. The biggest side effects for keto are acidocis and constipation, the former of which can occur if you enter ketosis too quickly. We started keto after Thanksgiving at a 1:1 ratio (one part fat and one part carbs + protein) to prevent this. You’re not typically in ketosis until you’re over 2:1, so we spent the first month gradually increasing the fat, getting used to calculating macro ratios using the Keto Calculator and measuring food. 

By January I was feeling desperate. I had started back at work after maternity leave and was overwhelmed by the diet now that the fat was taking over. On top of that, his seizures weren’t getting better. We needed a break, and we needed it in the form of keto doing its job. Our dieticians suggested we go up to an even higher fat ratio, and at the end of January we hit 3.5:1. Within two days the seizures stopped.

time to eat

There’s a level of exhaustion that is universal to parenting, especially in the beginning, when your time and sense of self are so drastically different than they were a few years (or months) ago. All you want is one day off, to truly reset, and it is always just out of reach. Keto is this amplified. It’s comically hard (especially for two people not particularly good at cooking). Not only are you calculating, measuring and preparing a meal, but you also have to get a four year old to eat it. It’s easy to lose yourself in such a lofty endeavor. The exacting nature of the diet fuels perfectionism, as well as the false hope that you’re only one day away from everything clicking into place. Even resources provided by those who paved the way – cookbooks and blogs written by talented mothers – can be depressing to read when you know there’s a 75+% chance your kid will not eat anything you make. 

A few months into our diet, I posted on a Facebook group for helping/hiring immigrants in Denver, one of the major cities that received thousands of migrants in recent years. I was looking for someone to do yard cleanup work. I got many replies, but the one that caught my attention was a young woman named Maria who attached a picture of her family – two girls under age three. The pulling of the heartstrings worked on me, and I hired Maria for regular house cleaning. During her early visits she exuded gratitude and relief to be in such a supportive country (they had just emigrated from Columbia), but in recent weeks her tone has been more of desperation. Her husband’s work dried up. The food bank they’d gone to closed. There’s a darkness that looms. They can barely afford to eat, let alone eat well. I send them home with our extra pasta and rice, food that we don’t go through as quickly as we used to.

I can’t help but imagine what Maria would do if one of her kids had M.A.E. Keto has been effective, but there’s an element of the diet that feels extremely classist. Since Bernie is forbidden from eating cheap snacks (too high in carbs), the only pre-made snacks he can eat are expensive and hard to come by. The most successful options end up being homemade foods high in mayo, butter or oil that mimic “normal” foods to appeal to kids. Bernie used to be an adventurous, voracious eater, but nine months of keto has made him picky and indecisive – we often end up composting an entire day’s worth of food. This is not just a waste of money and food, but it’s also a waste of time. Calculating and measuring food can be all-consuming, especially if you’re trying to appeal to the whims of a picky eater. It often feels like my high paying, flexible tech job is bankrolling Bernie’s seizure control. It’s a stressful and depressing realization.

From my experience parenting picky eating pre-keto, I know that the most effective way to handle food issues is having us all eat the same thing together, something that was very achievable a short year ago. Now the thought of having two versions of the same meal ready by 6pm every night is a canyon-sized stretch of the imagination. These days, the cooking energy is spent on Bernie, and my husband and I tend to scrounge up frozen meals or takeout after the kids go to bed. Most of my weekend free time is spent preparing food for school lunches, brainstorming new meal ideas, and hoping that at some point our food routine will click into place the way it did when he hit other eating milestones, like switching bottles or introducing solids. Some days it feels attainable, but most days it does not.

And yet…we are currently in the coveted stage of “seizure freedom”, said to be achievable by ~half of Keto epilepsy cases. In so many ways, it’s an amazing place to be. There is a sense of hope and normalcy that escaped us in 2023. His speech has drastically improved, he doesn’t fall nearly as much, and he’s starting to regain some of the fine motor skills he lost last year. I have more and more confidence that he will catch up with his peers developmentally, and that he will live a very fulfilled and happy life. The path forward is still uncertain. His epilepsy could disappear within a few short years, or it could stick around indefinitely. Either way, we found a way to control it that on our worst days feels hard and best days feels miraculous. 

Last month Bernie started kindergarten in a general education classroom. In the mornings he’s excited to go to school, to learn, to grow. I’m still not sure if we’ll ever get good enough at this for it to be easy, but hot damn, every day that goes by without seeing a seizure is worth it.

first day of kindergarten

Starting a new leaf

11 years later and I'm trying to restart this blog. I'm not sure what I'll be writing about but I guarantee it will not be as well researched as last time around! Also not entirely sure if I will stay on this platform, but for now I'm here.

Stay tuned! In the meantime, here are pictures I took of my kids this morning:

Test Test...Technical Post 1

I recently enrolled in a DaVinci Coders bootcamp in Louisville, CO. The first assignment was to set up a blog that we'll be using to track our progress through the class. A blog, you say? I have plenty of experience, see notaprimarycolor or gingercobra or one of my other abandoned blogspot attempts to maintain my writing. Except...for this one I was to create my blog in a repository in my workspace folder using Ruby via my Linux command line and push that repository to github.

Jason Noble, our instructor, gave us "Octopress" as a possible framework to use, which sounded as simple as simple could be in this situation, so I began following instructions to set up the blog...and quickly hit roadblocks.

It's worth noting two things here:

1) I have barely a touch of Linux experience, just set up my computer with a Windows 7/Ubuntu dual boot in December and

2) in the last two days I am vividly reliving the stress of computer illiteracy that inspired me to get into the field in the first place (taking an online course that used 'Blackboard'; experiencing constant malfunctions).

Things I have learned in the last two days that are in theory supposed to help me:

- My command line terminal default profile should have been set to "Run command as a login shell". I'm not sure what this means yet but I failed to do it during the install and it's caused a few of the roadblocks.

- Somehow, my rvm got put in the wrong place (I can't really explain this yet?!)

- I am in over my head, but things will get better..?

I still haven't gotten either of my attempts to work (despite the gallant after-class efforts of both Jason and my Linux friend classmate Mark), so I'm setting up this in the meantime. This blog will likely just be a temporary locale until I can get either Wordpress or Octopress working, but I figure it's worth getting things down for now so I can leave the dark hole of my terminal to do some more assignments. Oh wait...our first assignments are on terminal commands.

Forces in Yoga, Part Deux

In true summer fashion, I had to produce a sequel. I caught up up with Janet Tsai, 26 year old engineer/yogi goddess to see what's new in her world...

Janet Tsai is a Ph.D.candidate in engineering education and mechanical engineering at the University of Colorado in Boulder. Janet Tsai is also a Nicki Minaj fan. While writing her first professional paper for a conference recently, she listened to this song: 

http://www.youtube.com/watch?v=-JGbpVcSyPk  

When I meet Janet at a bar in Boulder to watch Game 4 of the Bulls-Heat series, it’s with the intention of talking about her work. I'm curious about her newly acquired grant from the National Science Foundation (NSF), undoubtedly the biggest change in her world since February (see Forces In Yoga). We get to it, but not before talking about the sex appeal of individual pro-basketball players, the awkward encounters she’s had with the guy at her neighborhood bagel shop and the likelihood that a pregnant woman’s single exposure to secondhand marijuana smoke will affect her unborn fetus. Janet says she’s been listening to the Sean Garrett/Nicki Minaj song on repeat. I vow to look it up.

The Heat are running away with it and we get in a few work-related words. Janet has been awarded a Graduate Research Fellowship. The NSF awards 2,000 of these a year, each of which affords its recipient a sizeable educational allowance, annual living stipend and networking opportunities galore. Its former recipients include the co-author of Freakonomics, the founder of Google and current Secretary of Energy. Janet’s plan is to use this upcoming year to develop her curriculum for her pilot program. The following year she’ll implement the curriculum in one school; the year after in multiple schools. She admits her fear that it might not work. Boozer and the Bulls completely fold in overtime and we part ways. 

***

Four days later I’m stuck in heavy traffic in the outskirts of Boulder, trying to make it to Janet’s Saturday yoga class by noon. I’m listening to a radio program about how psychopaths don’t feel emotions when they see pictures of dead animals or people--all the while screaming at every slow-moving/non-rushed entity with which I come in contact. If I were to “accidentally” hit someone/thing in this emotional state, would I be exempt from psychopathic branding? I sneak into Janet’s class thirty minutes late, welcome and invited to unwind. 

Janet’s theme for the day is sustainability--the importance of getting basic postures right in order to ensure overall better alignment and healthy structures. I’ve missed her introduction (which she designed over an awkward bagel at her  neighborhood bagel shop that morning) and am flopping through postures. She swoops in to correct me. She pushes my shoulders down to melt more. She pulls my saggy hip to be more powerful. Her cadence is low and the lights dim. The whole setting is incredibly relaxing. 

Afterwards we get coffee one bustling Boulder block away from the studio. I ask her more about her teaching style. Janet admits that she‘s not sure she always connects with her students, though she is confident that she’ll grow into her individual style over time. She stays on this subject of connection, drawing similarities between her worlds of engineering and yoga. Both, she says, encourage students to be in constant search of connectedness. She uses tetanus--sustained muscle contraction--to flesh it out.

“The nerve signals are what are controlling the rate of the muscle fibers‘ firing,“ she says, describing a scenario in which muscles are shaking to stay in a pose. “The idea with yoga is that we train our muscles to act together to such a great degree so that even the neurons, the signals beings sent, are totally cohesive." As in, those shaking elvis legs will eventually steady as each muscle fiber within the large muscle learns to act in tandem with each of those around it, increasing strength and dexterity. 

“I think common questions in any yoga class are how engaged can we be, and how can we participate fullest in this moment? A lot of yoga is being in the moment. Engineers talk about it too.”

She shrugs. She’s got a lot of work before her, but also a whole bunch of moments ahead to figure it out.

http://www.youtube.com/watch?v=Ks3_kuRAzHs&feature=relmfu 

Follow Janet’s cool projects, including her Forces in Yoga teaching research, on her blog: http://www.forcesinyoga.com/pa/Forces_in_Yoga.html 

Love Brain

I once worked as an assistant to a general contractor dude in his late thirties. When I started, I had little experience that could be of use to Tom (name changed to protect the uh, innocent) other than enthusiasm, which he assured me was more than enough. Tom had been the landlord of my last apartment. I knew enough of him to surmise that he was laid back (smoked copious amounts of weed), had enough work to keep an assistant fully employed, and though a little creepy, was just a dude who loved his family, job and weed.

From the start, Tom and I had good friendly rapport. I made him laugh; he made interesting philosophical points; I proved to be great organizational assistance because he was perpetually stoned. Life was good. Eight hours a day in close proximity, however, had its affect on Tom’s blurry subconscious. My job description expanded from installing drywall, plumbing, and painting to include deflecting sexual advances. The increased workload made for increased discomfort.

On the day that would be my last, Tom gave me a book and confessed his “crush.” The whole ordeal was laughable considering how many passes he‘d already made at me. I tried to redirect the conversation to my current boyfriend (a tactic to thwart attention that I’m not sure ever really works), and when I mentioned that he was the second person I’d dated seriously, Tom got visibly uncomfortable. He paused. “Honey, I thought you’d been around the block a few more times,” he said anxiously. He told me he couldn’t do it after all--the emotional drama that I would create would “wreck” him and his family. As if to twist the knife of absurdity, he said he’d known from the start that I was afraid of falling in love with him and though he couldn’t be with me, he still needed me to come in early on Monday to finish this bathroom job.

My head was spinning as I left the job site. What the fuck was wrong with this guy? Where did he get off telling me I was afraid of falling in love with him? The outburst was the last straw. I quit in person, in front of his wife, two days later. Though I was finally off board the emotional rollercoaster, I couldn‘t shake from my mind his assertion that I was afraid of falling in love with him...

It was true.

In my case with Tom, I knew I was dangerously close to being seduced. I was too vulnerable and he was too in touch with my emotions. Any extended duration of employment would have led to either sex or insanity. We both caught wind of this before it happened, but the looming power of lust muddied our attempt to maintain a functional fellowship.

As it always seems to these days.

Casual sex for twenty-somethings is an easily addictive and attainable high. We mourn having fewer non-sexual friendships with the opposite sex, but then we keep indulging in the same behavior. Lust is a persistent and influential instigator.

There is science behind the madness. Sexual appetite is heightened by the release of the hormone testosterone. Though you’d think this release would occur in the sex organs, it’s actually happening in the brain (though the phrase “thinking with your dick” should definitely maintain its idiomatic stature). Testosterone increases in men often coincide with visual imagery (example, seeing a flash of leg). In women, words of affection or situational reminders increase levels of testosterone.

Studies have shown that female arousal tends to be sporadic and unpredictable. I personally cannot understand why you’d want to piggyback that biological trait with a clitoris piercing, but that’s just because the thought of having an orgasm while walking down the cereal isle terrifies me. Female arousal can be explained by the fact that the callosum--the fiber that connects brain hemispheres--is said to be larger in females than in males, which allows us greater access to both sides of our brain. This trait is both a blessing and a curse. We’re better with language (Dudes, stop making fun of us. We can’t help it, it‘s just how our brains work.) And we‘re aroused by a whole hiccup of things. Wait, which one‘s supposed to be the curse?

Men have more active parietal lobes, which integrate sensory information like that flash of leg. They experience lust most strongly in morning and in autumn. Women are horniest during ovulation. Both genders indulge in one-night stands, emotionally detached “hook up” partnerships and affairs. Both also settle for relations that are emotionally unattached when they want attachment. Humans are said to formulate their romantic ideals by age ten. At some point in our twenties, we throw them out the window.

Just like we do all kinds of things (I so wish I had been here):

http://www.youtube.com/watch?v=WJkhohR2-BA

We toss out the ethics, then chalk it up to being young and experimental. “Just trying to add notches on the bedpost” we say, patting ourselves on the back for sneakily masking our fears from outsiders. The fears, however, remain. We fear that our romantic ideals are too far-fetched. We fear that love isn’t real.

But sex is not just about lust. Even the most basic one-night stand can contain components of love, as sex releases more chemicals in our brains than just testosterone. After an orgasm, serotonin is released, which gives us feelings of relaxation and comfort. Later, when thinking about the person we had sex with, our brains release dopamine. Dopamine entices fantasies and love sickness (assuming it was all well and good). It is activated in the part of our brains associated with rewards and addictions, the mesolimbic reward system. Dopamine metabolizes into norepinephrine, which causes our hearts to beat faster and blood flows to increase (think of the last time you were on uppers, if you were ever recently on uppers). Phenylethylamine gives us feelings of romantic well-being, encouraging us to further sip the “chemicals of love” cocktail, whether we like it or not. This cocktail meddles with our intention to have strictly casual sex.

Moreover, sex releases chemicals of attachment (“the cuddle chemicals”) in both men and women--oxytocin in females and vasopressin in males. The release of each requires the necessary amounts of sex-appropriate hormones (estrogen and testosterone, respectively). These chemicals influence more than just post-coitus cuddling. People with varied or inadequate levels of these chemicals are said to have anxious attachment styles (crazy jealous girlfriend, for one); people with strictly low levels are said to have avoidant styles.

If you’re thinking this sounds a little too over-scienceified, I’d say I agree. People have all kinds of experiences over a lifetime that influence how they think about and respond to sex. The take home message is not that love is just brain chemistry and that everything we‘re feeling while in love/lust is a series of chemical reactions--it is that the whole business is cerebral. And that there’s a lot more going on during sex than just the act.

Rejection too is painfully cerebral. Getting rejected especially sucks (from my vantage point) when you’re a woman (who wants verbal closure because that’s how your brain’s wired) getting rejected by a man (who doesn’t see the point in talking about it). I used to think that that famous scene from “A Few Good Men” made good allegory of this point (Tom Cruise obviously embodying the female):

http://www.youtube.com/watch?v=8hGvQtumNAY

I thought this because I am a girl, and girls like to think. We put a lot of thought into our relationships, our breakups, and our post-facto analysis of relationships and breakups (as in, I feel like I have been writing this article FOR EVER). We don’t necessarily know what’s going on in the brains of our male counterpoints, but we like to think we know. When they “don’t want to talk about it,” most men probably aren’t on some mission to protect the walls of their subconscious with honor, code and loyalty. Nor are they out to hurt us. But we’ll believe both are true. We’re women in love, we can’t help it.

After I quit my assistant contractor post, Tom continued to text and email me, alluding to how he didn't trust me anymore. In response, I played Nicholson--a role I wasn't used to playing. I guarded my walls. I cut off contact. “He can’t handle the truth,” I muttered obsessively while alone in my room.

Which was a lie. I was the one who couldn’t handle it.



Author’s note: This article (and brain-related articles that are to follow) is inspired by the very bomb third edition of The Owner’s Manual for the Brain: Everyday Applications from Mind-Brain Research. It is by Pierce J. Howard and is really good.

Some Truths Behind Toxic Shock Syndrome

A couple of weeks ago, I began telling my female friends that I was considering writing a story about Toxic Shock Syndrome (or TSS). TSS is a fast moving bacterial-caused illness that can systematically shut down organs (kidneys and liver included) if not immediately treated. The syndrome is widely known among women as a morbid outcome of tampon mis-use. Leave your tampon in for more than eight hours and you are severely at risk, we are told.

My friends, who had long ago been familiarized with the facts and mythology behind TSS, each had the same response: “I don’t think it exists.” One friend informed me that she had recently lost complete track of her tampon use to no consequence, realizing three days into her period that one was wedged into the depths of her vagina. “Someone had just told me about when they forgot to take out a tampon once,” she said in a chipper voice, “and I was sitting there like, oh my god, I have a tampon in!”

None of my friends had had a TSS encounter of any type. Some of them had even fully forgotten about it. Having never have met a victim myself, I too considered the syndrome a sort of feminine urban myth. My friend’s disappearing tampon anecdote seemed to confirm its non-existence.

I began my research. Approximately 4 in 100,000 tampon users get TSS. Blanket symptoms include rapidly progressing fever and falling blood pressure, skin blanching, vomiting and diarrhea. As I read and wrote, I felt like an uninspired kid in Catholic school studying bible passages for a catechism exam. It was informative for a purpose, but no mind-blowing.

Then I read a personal account. A woman whose daughter had died from TSS posted an entry on a fact site. Her writing was honest and informative. Something about this woman masking the pain of losing a daughter with a desire to help others evade the same fate zapped me from my state of indifference. I was again the wide-eyed fourteen year old checking my watch every thirty minutes to see if six to eight hours was up yet. I called my 24hr tampon friend back. Hey, just double checking that you‘re okay. I asked her to repeat her story. As she spoke again, I felt phantom pain crawling from my cervix to my navel, then my rib cage…

If she was someone else, she could have died.

Although 4 in 100,000 is obviously a small number, the fact that TSS was practically unheard of before 1980 is not insignificant. In 1978, the company Procter and Gamble introduced the first super absorbent Rely tampons, which could contain an entire menstrual flow without leaking or needing replacement. Carboxymethylcellulose (CMC) and polyester fibers provided the mega-absorbency. Within two years, the Center for Disease Control determined that increased Rely tampon publicity had led to increased cases of toxic shock syndrome. The fibers could not filter Staphylococcus aureus, the toxic bacteria that causes menstrual-related TSS. Rely tampons were recalled, and the number of cases reported to the CDC began to decline.

Though it did not entirely disappear, TSS went off the radar. Then, in the late ’90s, Proctor and Gamble returned to the tampon scene (the company purchased Tambrands, the tampon giant that makes Tampax) and the syndrome again received a flurry of media coverage. TSS related rumors, as well as scientific evaluations of the current safety of tampons, spread quickly. Case numbers stayed low. The early 2000s did see a slight spike (one study considered it to be a result of earlier menstruation in girls), but Rely-like scandals were no more.

Toxic Shock Syndrome is caused by toxin that comes from one of two types of bacterium: either Staphylococcus aureus (think staph infections) or Streptococcus pyogenes (think strep throat). Strep TSS has nothing to do with menstruation, and not all of staph cases are menstrual-related. Strep TSS can occur in people with infected surgical wounds or respiratory infections, or in women who recently gave birth. Some Staph TSS cases can also be caused by surgical wounds. Staph bacteria can be found on the skin and in the noses of about a third of the population. Most people have antibodies that protect them against the dangerous strands of the bacteria that cause TSS--95% of women have the antibodies by the time they are thirty. They are then immune to it. People who get it once, however, are more likely to get it again.

Here I feel that I could go into more precise details of what is happening scientifically in TSS, but I’d rather hand the microphone to the mourning mother:

“The truth is, the deadly toxins begin to multiply within 2 hours after inserting your first tampon. Regular, or Super! When you change a tampon after even just a few hours that toxin remains inside just waiting for you to put in a new tampon. It takes up right where it left off when it comes into contact with the viscose rayon [a fiber often used in today’s market] in the tampon. The longer you continue to use tampons even while changing the more concentrated the toxin becomes, Once this toxin gets into your blood stream, (it can enter with only a couple of scuffed off cells from changing a tampon) it's 10,000 times more deadly than sepsis alone.

“The reason you need to use a pad at night for at least 8 hours is, you remove that rayon filled tampon and the toxin takes that 8 hours to dissipate, (die off) then in the morning you can start the deadly process all over again. Providing your tampon isn't leaving fibers behind..…”

As I reread this woman’s account, it gives me the same feeling of uneasiness it did the first time. I use tampons. I leave them in overnight. Sometimes all day. I am very much alive and this woman’s daughter very much dead. Why her instead of me? My body contains antibodies that hers did not. It is neither of our faults, it just is.

The real truth behind TSS cannot be found in the paragraphs containing the tampon industry’s shady history or the science behind the syndrome. The real truth is that people get it and people die. Medical discoveries do not have to be earth shattering to be real.

Antibiotics Files, Part 1

Every person on earth tells lies, excluding maybe yet-to-be canonized saints and Al Franken. We say things we know are not true, things we think are true that are not, and things that that just pop into our head, their truthfulness unimportant. We say things that are off-base and misguided. Not all these are equally abominable, but all require some sort of recognition of fault, in my opinion.

My Confession:

In my last post I wrote in my “Quick Facts” section: “The common cold is a virus, not a bacterial infection. Antibiotics cannot cure your cold. You know this; stop playing dumb and asking your doctors for them anyway.”

This was off-base and misguided. People are not asking doctors for antibiotics. Doctors are shoving them down our throats.

Last week, I made my own doctor visit for a sore throat I had had for ten days. I sat on the paper covered bed, opened wide as the Physician’s Assistant cocked her lit magnifier towards my throat and nodded, zombie-like, when she said “That looks bad. Let’s get you on antibiotics.”

Six days into antibiotics, my throat looks EXACTLY THE SAME AS IT DID WHEN I STARTED. Swollen, discolored and helpless.

So why did I fall for it? Why, even after her rapid strep came back negative, did I not say “Um, are you sure, lady?” Why was I able to say that so confidently to my roommate when she offered me her unused Amoxicillin pack, but choke when the PA prescribed the same thing? Why?!? Because although my P.A.’s answer to my question of whether or not this would work was not a definite yes, it was a definite “I hope so and am banking on it.” Her hope rubbed off on me. I abandoned my wariness of the drugs. I was on board the antibiotics train because she was. I wanted to go where she was going.

In fact, the rail attendants shoved me off in "antibiotic misuse hatred" land, which is a far cry from "fully healed thanks to antibiotics!"-ville, but really not that far from where I started. A week into antibiotics my sore throat pain is just as intense as it was before. With my Ibuprophen supply dwindling, I decided to finally go homeopathic; (my inability to do so earlier is probably why this thing mutated so severely in the first place). I did a few salt gargles, but they reminded me too much of accidentally lapping sea water while trying to soothe an expanding sunburn at a crowded beach. I tried an apple cider vinegar gargle. That one led to seething pain and a whole bunch of extra swollen-ness. The morning after apple cider, I wondered if my throat would ever feel normal again.

Then I tried a cayenne pepper gargle. Its slight sting, lingering tingle and subsequent numbness was the trick I was looking for.

I have since adopted the cayenne as my pain-reliever of choice. I carry my concoction around in a pink travel mug, to work, the movie theater, friends’ houses. My mug has become my own version of an a smoker's cig pack. I always have it within reach. When feeling slightly detached from conversation I catch myself drumming it with my finger nails, my gaze drifting as I compute the shortest distance to a location socially acceptable for me to gargle and spit. It has truly become the only source of relief I’ve found in this seemingly endless infection.

As I trudge it out, I continue to take my antibiotic pills three times a day. They are like the placebo pills of a birth control pack, except that the introduced antibodies would mutate into suberbugs if I didn't take them.

I will take them all. I will not let them beat me, and I will not board that train again.