When I haven’t had a real flare in a while (flare in my case depicted by aggressive heating up randomly due to pressure or any prolonged skin contact, or when my skin develops a hot red undertone color), its timely arrival always knocks me down a few notches. Sometimes I liken my eczema to being some kind of monster that continues to hunt me movie after movie sequel, or I hear its irritating voice cutting through a crowd. This most recent flare comes across like a socially unaware drunk, and I like to lighten my mood by pretending it would act like Sheldon from The Big Bang Theory:
Ugh. At any rate, I’m taking it day by day, and the good news is when I do fall asleep (and Fiona doesn’t wake me up) I can really sleep, thankfully. It’s strange, I don’t really remember what it’s like to naturally wake up anymore. In the immortal words of country singer Thomas Rhett, “ain’t it funny how life changes”.
But, when I am first in bed, sandwiched between the time before I can succumb to the depths of the dream world and the time before Fi wakes me up again, my head is filled with thoughts that I have to process.
It’s during this time that I find that I tend to blame myself for my flares. I’ll think back to things I ate and worriedly wonder if it was sunflower oil in the crackers causing me to develop a sensitivity to my moisturizers that have sunflower in them. Or I’ll berade myself because I had the fruit covered in dark chocolate. I’ll panic that I’m secretly allergic (but not anaphylaxically) to almonds and just never knew, or that it’s because I had too many calories and ate too many legumes and so I slugged my digestive system down and now I am paying the price. Or maybe I had a Polar Seltzer and who knows what those natural flavors are made of! Or I had a probiotic drink and maybe it was the wrong kind of probiotics. What if it was the coconut!? At any rate, the result is always the same, fearing food and feeling blue about myself.
This type of stress gets compounded by my clingy eczema, as it lingers over me constantly reminding me that there is a cause to each flare-up, so what was it this time? I also find that I scratch my hands a lot more at night from a combination of the heating up moments laying under the blankets along with the constant drying out (and literally nothing keeps the moisture in at this stage!).
What I’ve learned is that when I get super tired in the middle of the night, as I’m pawing away at my paws, I tend to have thoughts zoom around my head that make no sense but seem so logical in the moment. If I just scratch here then you know that assignment will get done. And random nonsensical thoughts like that. I honestly have no idea what I’m talking about when I wake up in the morning and looking at my picked scabs and scratch marks.
When I do have some skin healing downtime, I like to map out how I’ll treat myself later. I know it’s a pretty divisive option, but I love tattoos. I think there is something about knowing my skin gets all wrinkly and cracked and flaky that makes me not have those “well imagine how bad it will look when you are old and wrinkly” thoughts. I’m already wrinkly, and age has nothing to do with it. Me and this cat are basically identical:
At any rate, I like to find cleared spots and think about what kind of tattoo I would get there. Lately I’ve been thinking about lotuses. They have a lot of symbolism for women’s health which I really like. That and I really want to get a tattoo of a open book at some point. Generally I like dreaming this up a lot more than I actually execute action, but who knows what will happen after this flare passes.
Happy belated Halloween! Yes, I know I’m a day late but I’m including other holidays to pad my belated holiday post.
I started writing this at 3am on Halloween, and boy was I feeling it. I’d say I was doing about as well as an old cracking, stiff black leather couch on a dry heat kind of day when hot human flesh sprawls on top it (aka I was both drying out and exuding an uncomfortable amount of heat). To compound that, Fi kept waking up around every 2 hours, and it takes me at least 15-45 minutes to go back to sleep after she’s cared for, so deep healing sleep was not in my repertoire the other night, folks.
And so, instead of sleeping, I got all ready to chat about my once favorite holiday, Halloween. Did I mention how I absolutely love to dress up (or did before my skin started raging against the machine that is my body)? Anyway, I truly believe this day (or days) of year is (are) incredibly magical. For one, there are so many different cultural holidays, from our Halloween roots of Samhain, to All Saints’ Day to Latin America’s Día de los Muertos, to harvest festivals, to Guy Fawkes Day, etc.
Let’s start with the American classic holiday, Halloween. We all know how the holiday is celebrated today, at least in North America (though I’ve got a fun example of how it’s changing in an eczema-friendly direction that I’ll talk about later in the post), so for now let’s skip back a few decades to talk about Halloween’s origins.
Here’s the shortened history. Halloween had its roots from the Celtic festival Samhain, a celebration of the end of summer and the start of the harvest season. Because of the weather changes from summer to winter, it was also believed that this was a time when the worlds of the living and the death overlapped, and spirits could return to earth. To celebrate, the Celtic priests (Druids) made large bonfires where people brought sacrifices from their farm production, and they dressed up in animal skins.When the Roman Empire conquered the Celtic territory, they introduced other festivals that blended into our current holiday lore, such as commemorating the dead and festivals of fruit and trees (one which may have inspired the oldtradition of bobbing for apples).The blending of Christianity into the Celtic territories led to holidays like All Souls’ Day, which was like Samhain but people dressed up as angels, devils, and saints, and eventually All Saints Day was moved to November 1st and Samhain (which became All Hallows Eve, and then Halloween) became the night before or October 31st. Halloween in America started out more similarly to the harvest festivals, then formed into an amalgam of folklore, ghost stories, mischief, and asking for treats. Over time it was reformed to try to be more community-based with parties, and with treats being given out to avoid tricks becoming the norm. At some point costumes were encouraged, first as a way to deter roaming spirit from recognizing living people, and then it was more for fun as it was modernized to what we know it as today.
Speaking of modernizing, there’s a new version of Sabrina the Teenaged Witch redone as a Netflix original (called Chilling Adventures of Sabrina) that definitely takes a much darker take on the 90s sitcom. In it, Sabrina is a half-witch, half-mortal who is constantly taking on the patriarchy, which is particularly creative when the patriarchy in question is not always that of humanity. But that’s where I’ll stop just in case anyone is planning on watching it (noting that some of the themes and violence are not appropriate for young children).If I were to try to liken the show’s general theme to that of eczema, I’d say it would be that you should always feel free to fight to create your own space, your own identity, and your own world even when the options seem to be telling you that you have a limited amount of choice. I’d elaborate more but I’m trying not to give away too many thematic spoilers.
And as promised, here’s a fun eczema-friendly movement that’s developed. Called the Teal Pumpkin Project, it’s a movement that is in recognition of the growing amount of life-threatening food allergies. Pioneered by a mom named Becky Basalone from Tennessee in 2012, she painted a pumpkin teal to indicate that she would offer alternatives to candy on Halloween, as her son had anaphylaxis and she wanted to have a way for him to still enjoy the holiday without worry. The Food Allergy Research and Education organization picked up the Teal Pumpkin Project and helped it gain country-wide recognition in 2014, encouraging people around the nation to put out these teal pumpkins to let families know that there are allergy-free (non-edible) treats available. So now, for those children out there that may be going through some sort of systematic inflammation disorder (be it food allergies, eczema, or something else), they also have a way to still partake in the festivities of All Hallow’s Eve. If you want to be involved, you can paint a pumpkin teal and put it outside your house, and then add your house to the teal pumpkin project map.
Now for Día de los Muertos (or Day of the Dead). This holiday has seen an increase in recognition in the states over the years (just look at movies such as Book of Life, or the newer Disney movie Coco). It entails a celebration of one’s deceased, honoring their lives by creating an ofrenda (or offerings) for them of food, flowers, colorful skeletons, and people don brightly colored clothing and have parades and music and festivities to celebrate their family. The belief (of which developed from a mix of Aztec culture and Catholicism) is that on the Day of the Dead one’s ancestors come back to visit on earth, but it is disrespectful to grieve for one’s deceased, so instead it is a day of reunion and remembrance and happiness.
And lastly we have Guy Fawkes Day. Many of you may be familiar with this holiday due to the 2006 movie V for Vendetta, that centers around this elusive date of November 5th (easily remembered by the ditty: “remember remember the 5th of November, the gunpowder treason and plot. I know of no reason why the gunpowder treason should ever be forgot.” The history behind this holiday was that under various monarchs in England, (but primarily under King James I’s rule), Catholics were persecuted, unable to marry, fined for refusing to attend non-Catholic services, etc. Various attempts to overthrow the ruling king were enacted but the most famous was that done by Guy Fawkes and company. Their plan was to use gunpowder to blow up parliament on November 5th, 1605. Somehow, a letter was delivered to parliament about the plot, and Fawkes was stopped November 4, and subsequently he and his team were sentenced to be drawn and quartered as punishment for high treason. Celebrations with bonfires started after the plot was revealed and November 5th became known as Guy Fawkes Day, (even spreading to America as Pope Day where people burned the Pope in effigy). Although America stopped celebrating their version, in Britain, Guy Fawkes Day entails (even today) bonfires, fireworks, parades, and of course, burning Fawkes in effigy. The holiday has taken a spin where Guy Fawkes is sometimes seen as a hero, a change which is attributed to the movie V for Vendetta, where V wears a Guy Fawkes mask as he attempts to topple a fascist government regime. Spoiler alert: in the movie, V goes on a last stand rampage to kill off the remaining “bad guys” and results in him sacrificing himself. While he is dying, he shares a “kiss” (put in quotes because the heroine, Evie, kisses his mask), and then he dies and she puts his body onto the train with all the explosives, that runs under parliament. Maybe if V had lived in this time period, instead of deciding to sacrifice himself he would have jumped into the bandwagon of #unhideECZEMA, but pioneered his own movement to be about unhiding burns, and then he could have removed the mask and gloves and found himself worthy of living a new life with Evie. But then there wouldn’t be a movie.
Speaking of movies, here’s a side note to end with (though it’s not family-friendly and it’s quite violent and whatnot): the movie Deadpool actually supports the idea really well of skin issues not being a big deal. Spoiler alert: Ryan Reynolds’ character Wade, aka Deadpool, becomes horribly disfigured from a mutant experiment and spends the first movie chasing after the psychopath doctor who did it to him to get the doctor to make him good-looking again before he is wiling to go back to see his beloved girlfriend/fiancée, Ness. When that plan ultimately fails and he is going to be forever scarred, he is still reunited with Ness and she is upset at him for wasting time away from her, but unfazed by his skin. The old adage holds true, love is goes deeper than skin deep.
And now here’s to me hoping my skin is cooler tonight and I can sleep.
Today’s post may feel a bit out there, but that’s why it’s also nestled under my “miscellaneous” category. So, having absolved myself of all guilt for anyone who misinterprets this post as hard fact, I begin.
I recently saw the term ‘seed cycling’ used on social media and became intrigued as to one, what it meant, and two, what benefit it had (if any).
A quick Google search led me to both answers. Seed cycling is somewhat literally what it sounds like (although my first guess as it was 4am as I wrote this, involved interpreting cycling as bicycling). You cycle between seeds in your diet, consuming specific ones at specific types during your menstrual cycle (and supposedly it can be use for peri-menopausal and post-menopausal women as well).
Anyway, the theory is that a menstrual cycle is most naturally working if it is within the 28-day cycle, and anything else indicates some sort of imbalance of estrogen. The seeds chosen during the two phases of the menstrual cycle (when estrogen is decreasing and when it is increasing) are chosen specifically to help balance out the estrogen in each phase to allow the person to resume the natural cycle duration.
At this point you may be wondering why am I posting about this on my eczema blog? Well, you may recall from my post on pregnancy, that one of the factors believed to provoke eczema in pregnant women is the surge of estrogen. So my hypothesis is that if one’s cycle is off, and they experience larger ranges of estrogen surges during phases of their cycle, perhaps that would increase the intensity of an eczema flare.
Here’s a quick overview about the menstrual cycle (I previously worked as a women’s health consultant, so I both enjoy this kind of knowledge and could use the refresher myself). We have 4 phases: menstruation, the follicular phase, ovulation, and then the luteal phase.
MENSTRUATION – This is the phase in which the lining of the uterus (or the endometrium), which has thickened over the month, comes off and there is bleeding from the vagina.
FOLLICULAR PHASE – This phase starts on the first day of menstruation. The pituitary glands, triggered by the hypothalamus, release follicle stimulating hormone (FSH), and FSH in turn causes the ovaries to release a few follicles, each of which has an egg. One of these follicles’ eggs will start to mature, while the others die (around day 10). The uterine lining starts to thicken during this phase too due to follicular stimulation. The follicular growth also causes a surge in estrogen, which the body compensates for by the hypothalamus releasing gonadotrophin-releasing hormone (GnRH), which gets the pituitary gland to release lutenizing hormome (LH) and FSH.
OVULATION – During this phase, the high levels of LH triggers the release of the mature egg from the ovaries in two days. The egg is propelled by little hair-like structures through the fallopian tube into the uterus. Once there, it can survive for only about 24 hours. During this process, the egg has “hatched” out of the follicle, and the follicular remnant that gets dragged along outside the egg becomes the corpus luteum. The corpus luteum releases progesterone and a little estrogen, a mixture that helps keep the uterine lining thickened.
LUTEAL PHASE – During this phase the corpus luteum releases progesterone and a little estrogen, a mixture that helps keep the uterine lining thickened. When no pregnancy occurs, the corpus luteum falls off and dies (around day 22), causing a drop in progesterone. The progesterone drop triggers the uterine lining to fall off (aka menstruation), hence the cycle repeats.
So how does one do this seed cycling, you ask? Well, during the follicular phase (day 1 when you start to bleed to day 14) you take a daily dose of 1 tablespoon of ground flax/pumpkin/chia seeds. From days 15-28 you take a daily dose of tablespoon of ground sunflower/sesame seeds. That’s all there is to it.
But why is this supposed to work? I couldn’t find any rigorous studies on seed cycling, but came upon a blog post written by a naturopathic doctor (Dr. Lindsey Jesswein). She explains that the seed hulls have chemicals called lignans, which help “modulate hormone pathways”, and the seed oils (made of omega fatty acids) help “provide the building blocks for steroid hormone synthesis”. Jesswein then describes each seed (minus chia) a bit more by what they provide:
Sunflower – vitmin E, linoleic acid, magnesium, potassium, zinc, calcium
The Herbal Academy (which was how I came to Dr. Jesswein blog post) goes into a bit more detail about the various benefits of each of these seeds and provided studies, but noted that the information was on individual seeds and not their impact with seed cycling.
A few of the studies they included (and some additional ones I found) found that:
Overall the evidence of large changes for the menstrual cycle is not huge, but at the same time, it generally doesn’t hurt to consume seeds in one’s diet so it may be worth trying if you want to play around with your nutrition (though always seek advice from a medical professional first, especially if you have a specific condition you are trying to treat!).
I’m curious to apply seed to myself so I might give it a trial for a few months and report back. Maybe. I’m also incredibly fickle, so probably not. I generally eat flax anyway with breakfast and the like, but I wouldn’t be able to notice if there were any changes because I’m still breastfeeding and thus not getting my period anyway.
Also I do understand that engaging in many different eczema projects simultaneously results in confounding the data as to which project individually helps my eczema, but it is my belief that eczema cannot be managed by just one miracle solution (though diet is a huge one) and so enacting multiple positive changes and approaches, so long as they are sustainable to myself lifestyle, I view as being the most maximally beneficial.
Today’s post starts off as a bit of a downer. I have been feeling a bit trapped lately.
First off (and I’ll need to go back and do some searching because I’m genuinely curious), of all the people out there going steroid-free/not on biologics who have eczema covering over 50% of their body (and all the concurrent fun symptoms that entails), did this degree of eczema impede or otherwise alter your life plans (specifically career goals and things of that nature)?
I ask because lately I have fallen into a rut where I feel like I am failing. I left a planned career behind because a continuously flare was deteriorating my lifestyle and because of the nagging fear that my flares would always be there holding me back, making me miserable in my field of choice (physical therapy at the time). So there I was, feeling grumpy, and wondering how others with severe eczema who work in health professions do it. But then I talked to my husband about my frustrations, which, to be fair were compounded by the worries and stress I’ve had with breastfeeding.
So let me foray into that realm now. In a nutshell, the current issue is that Fi sometimes has blood in her stool (poop) and most doctors tell me to use formula, in lieu of focused elimination diets. This stresses me the f*ck out because one, the pediatricians have been inconsistent in their reasoning. When Fi was less than 2 weeks old I was told to use formula because Fi wasn’t gaining “enough” weight (which is pretty subjective especially since their measurements haven’t been the most accurate… but that’s a rant for another time). Instead of teaching me about different ways to entice a baby to eat more or about potential reasons why she might not be eating, I was told to try pumping once to see how much I make in a sitting, and then supplement with formula with however much I pumped to make 3 ounces. The logic was clearly my body was failing to produce enough milk. So I pumped and only made about half and ounce and I diligently tried to feed her 2.5 ounces formula. You know what happened? She only drank half an ounce of formula and then didn’t want to eat anymore. The second reason I get stressed by this push towards formula now is that initially when Fi wasn’t eating I was told to eliminate dairy and soy from my diet. When I asked three doctors about how to reconcile the fact that formula (including the hypoallergenic ones) have dairy derivatives and soy I was told 3 different things:
Doctor 1. The hypoallergenic formula doesn’t have dairy or soy. But it does.
Doctor 2. It (this was around day 10) is more important for Fi to gain weight than whether or not the formula has allergens. That’s great and all, but Fi wouldn’t take more than an ounce of formula or breast milk at a time.
Doctor 4: This particular other hypoallergenic formula (being prescribed at around 3.5 months due to the blood in Fi’s stool) has hydrolyzed milk protein (basically pre-digested milk proteins, in that they are broken down so supposedly easier for the baby’s digestive system to handle), while the brand prescribed to me at 10 days was partially hydrolyzed. Okay sure, but then there was no mention of the fact that the third ingredient in said formula is still soy oil.
My complaint with this process is that the pediatricians have no advice about nutritional or dietary changes. Doctor 1 told me to give up dairy and soy, and then try gluten and eggs too if that didn’t work, but openly admitted to not knowing much about how diet affects breast milk or if foremilk/hindmilk imbalances have an effect. The same doctor told me that we had to keep getting diapers tested for occult blood (invisible blood in the stool). Doctor 2 was more like “look she’s a baby. These things happen. She’s gaining weight now so we are good.” And doctor 4 was like “occult blood doesn’t matter, we only care about visible blood”. I have a hard time trusting my baby’s doctors if they are all giving wildly different advice. Oh, and another point I have to make. I didn’t seek out 4 different doctors. The practice Fi goes to usually just sticks us with whoever is available so we have seen 5 different doctors/nurses there and gotten wildly different advice from each one. Doctor 4 I mentioned was a GI specialist, which we went to see as per doctor 1’s advice.
As for Fi’s inability to gain weight fast enough from day 10? She started gaining weight (still exclusively breastfed) after we had her treated for reflux, (which I had noticed because she made gagging faces whenever she ate, and doctor 3 confirmed my suspicions go be correct). After a few weeks, the reflux abated and she was fine on that front.
My problem with this process is it feels extremely similar to how doctors treat things they can’t solve, such as with eczema. I’ve gone to state-of-the-art facilities, told a dermatologist my background including about having horrible topical steroid withdrawal symptoms, and been either convinced or scared into using steroids again (the scaring came from being told my organs would all be inflamed if I didn’t use steroids). None of them addressed diet, none of them offered any alternatives to steroids, though one did say if steroids didn’t work we would move to cyclosporin (an immunosuppressant drug used for people who get organ transplants so that their body can’t reject the new organ). That option was on the table so long as I was ready to get frequent check-ups for my kidney* to make sure it was functioning well, and so long as I knew I would be at risk for getting sick more easily. It felt like an extreme option to say the least.
*(I previously wrote liver but meant to write kidney!)
This constant push towards formula without trying less invasive means first, disturbs me. Formula and breast milk are very different. Breast milk gives Fi a better chance of not getting eczema (which she sorely needs given that both Jake and I have it) as well as helps her fight off colds by producing antibodies when either one of us is getting sick. Breastfeeding also releases oxytocin and other calming hormones to make us both happy mellow and sometimes sleepy lovelies when I nurse her (a nice boon!).
This is not to say I wouldn’t use formula if I knew it would solve her problems. But so far the evidence indicates that it may not. Her weight gain issue resolved without formula, despite it being implied over and over that my body was to blame for the issue in the first place. She could only be having weight gain trouble if I was underfeeding her, because my supply was too low, right? Imagine if I hadn’t thought to inquire about her reflex symptoms.
And if doctor 2 is right and this is stool issue just part of her developing digestive system, then we have cut her off breast milk for no reason. Plus the formula doctor 4 prescribed? It’s so expensive that there’s a black market demand for it, despite it being pretty much identical to the formula doctor 1 prescribed. What?
So anyway I have this constant lingering fear that my body is poisonous and killing my baby, so therefore I’m failing being a mother, and I can’t work first because of skin and now also because of my tenure as a failing mother, so I’mm failing as a working adult, hence the added stress of being a useless human.
I should probably qualify to say that despite Fi’ s ever fluctuating stool contents, she is quite a happy baby, still slowing gaining weight, and hitting milestones as she goes. She is also a crazily active baby, which may be the reason she gains weight slowly as she does spend cumulatively hours a day flail kicking whatever comes her way and smiling about it.
I don’t know. I guess the problem is that I straddle unknowns so often that they are starting to get to me. It just sucks to feel like my body is constantly to blame. It feels like my skin is a fluctuating erratic b*tch and now my breast milk is too?
Another qualifier I have to add. After all these diet changes I’ve been doing, I have noticed that my skin is much less terrible this cold season than previous ones. So clearly something I’m doing is helping a little. And the same can be said about Fi. The blood on her stool has lessened so much from when we saw doctor 4 and I just started avoiding rice (which I ate all the time) and oatmeal (which I realized I wasn’t eating notably gluten-free ones (oats are commonly contaminated with wheat during processing)) and cocoa/chocolate (which has caffeine and historically I’d eat a lot of it at one time). But the other problem is all these factors take time. There’s always potentially a quick fix medication to mask the symptoms, but to actually suss out what works and prevent it from happening again takes time. And what’s more nerve-wracking then sitting around waiting to see if your changes help or hurt your baby?
And then I’ll think, well maybe it’s not my diet at all, but the fact that I have so much systemic inflammation living with eczema, and that’s affecting Fi (despite not being able to find scientific proof or any doctor that believes that that happens). I don’t know. There’s no worse feeling than the lingering doubt and insecurity that you are f*cking up your baby.
Anyway that’s the basic hum of stress I have undertoning my life lately.
To combat that hum, I have been trying to augment lived with things I know have always made me happy and continue to do so: books, and more specifically, library books. I am forever taking out book after book on all manner of subjects, to consume like it’s my calling, like ants to sugar. To this day I know I would love working in a public library; I have so many ideas swirling in my head about improvements to various existing ones to help further user accessibility and build community. I just love libraries and books. So much information right there, and for free! You don’t need WiFi or a smart phone or anything. It’s a relic of a bygone era that I think is so important for today, as it provides so many underappreciated values. You can go to most libraries, in most towns, without being a patron, and sit down and enjoy their services including free internet. Lots of libraries have free events from book clubs to baby hangouts to beer nights. Every library has its own history and is usually shaped by its community, so you can get a glimpse of what a town is like by just walking through its library doors. Plus most libraries have interlibrary loan systems where they are partnered with other libraries to make sure they can continue to supply their community with a wide array of materials. There are also some funky libraries out there including Bookmobiles or libraries with novel services like American Girl doll rentals or art and tech supplies (like with Maker spaces). Libraries are actually one of the coolest inventions mankind has created. I just can’t get over a system that lets me borrow so many stories (I think I currently have 11 out, 7 on their way through the ILL system, and 21 more on my radar to take out once I make a bit more headway with my current batch).
I frequently find myself singing to Fi (completely randomly as I haven’t seen this show in years), “Butterfly in the sky. I can fly twice as high. Take a look, it’s in a book. Reading rainbow. Reading rainbow!”
I mentioned this before but eczema has given me lots of time to read, partially because it keeps my hands busy to hold a book, and partially because when I have the worst of flares I don’t have the energy to do anything besides curl up in a ball on the couch with a blanket draped around me and turn pages while trying to minimize any movement of the rest of my body. Luckily the latter hasn’t happened in a while, but since I have gotten back into the swing of reading, I have renewed my relationship with libraries (pun intended). I had gotten my new town library card a while back but recently I have been aggressively making use of it. We’re talking 10 books at a time and steadily getting 1-2 more books each week (yes I have a problem).
Anyway, historically, I have always been a voracious reader. I have memories of being ten and sitting down under the playground reading fictional adventure novels while kids ran around me. This happened only if the book was magically compelling, and surprisingly lots of YA fiction novels are at that age.
I also distinctly remember the awkward moment when at a family reunion I was hiding away under a bed reading the newest Harry Potter book when someone sat on it. The mattress springs crunched above me uncomfortably, so I snaked out an arm and gently tapped the family member’s ankle, sending them into an understandable jump-off-the-ground-in-total-fear-mixed-with-surprise moment. I stopped hiding under beds to read soon after (partially because I grew too big).
I also remember years and years of trying to read during car rides while sitting in the back of my mom’s old Honda van on that way to visit some family, and feeling car sick from focusing on the words swaying about with the car’s inertia.
As I also love things that are free (catch me in my hand-me-down clothes even as a late twenty-something mom), my love for libraries is not much of a surprise. My earliest memories of libraries are glimpses of bright lig t shining through musly building windows and rows on rows of colorful books. I remember getting excited that I could pick out whatever I wanted and the smell of old books and how I loved feeling the pages of a wellworn novel. Those strong sensory experiences continue to evoke my love.
There are also unidentified memories of accompanying my Oma, my best friend’s mom, and many others to unfamiliar libraries on book returning errands, and memories of playing those generic learning games on those chunky monitors screens.
I remember as an elementary school student, that we had those book fairs (done by Scholastic Books I believe), which excited me to no end, and always happened in the library. I was one of those kids that liked to get some new books, and those cutesy erasers.
I remember as a teen, trekking up the half mile or so from my house to the local public library, often with my friend Julia, to see what books we could find next. We had voracious appetites for fiction and fantasy, and I remember ambling through the shelves often picking books to read based on their titles or their cover art when I had no specific “to-reads” in mind. When I moved back home with my parents after college, I restarted my walking sojourns to said library, mostly to resume my enjoyment of fiction novels in between work.
I remember in high school, after tearing my ACL and not being able to run track and field senior spring, I hung out in the library with my “potluck” friends (so named because our hangouts started via a potluck meal). My grades actually improved while there so I graduated with an even higher GPA thus avoiding the stereotype of “senior slump”. And it was there that I started Pet Sementary and had my first intro to Stephen King and to more adult horror books (I had enjoyed Goosebumps when I was younger).
In college I made myself a home at the science library (Cornell) on my free time, and started working their my sophomore year as a library assistant for work study. My now husband recalls always making sure to come chat with me when I was at the front desk as he was already crushing on me. I remember getting to work the closing shifts on nights and weekends and as a result, getting to be one of the last people in the library. I wasn’t a night person so that was often exhausting, but also a weirdly surreal experience as the building that housed the library (called the science center) was generally emptied out on weekends at that point with most of the lights off. It was quite peaceful.
I remember my friend Becky and I staking our claim in a space and waiting it out in the college’s larger library (McCabe), working away until 10pm when they brought out the snacks. It was also a common library for group study as there were these study rooms on the upper floors if you wanted more privacy. I went back recently and some of the layout had changed (on the main floor at least) and it was so disorienting. Seeing a library change, even if it is for the better (which it was) is such a sucker punch to the memory.
For graduate school (MGH Institute of Health Professions in Boston) I would hide away in this attic-esque corner of the library with my friends, where we would study and sometimes practice physical therapy techniques on one another on the floor, but more often than not we would chat and enjoy life while simultaneously complaining about the breadth of material to study.
I once accompanied Jake last minute on a business trip to Ybor in Tampa, Florida. While he was doing his work thing, I decided to kill time by investigating the local library (the Robert W. Saunders Sr. Public Library). I had to walk about 2 miles to get there but it didn’t deter me. I always find it fascinating to see libraries in new states. I didn’t get a lot of time to explore it but I saw that it offers meals to those in need between 11:30am and 12:30pm and had different historical plaques and pictures about it like those below.
I also worked in the Cambridge Public Library when I was volunteering for the Eradicate Childhood Obesity Foundation and got used to navigating around one of the biggest (and oldest) library establishments in the country.
And now I have my town library where I currently do effectively drive-bys: running in to acquire books on hold and returning the books I’ve read before taking the munchkin home. I also, on occssion, explore the small town libraries nearby, getting jealous at some of the beautiful redone buildings and children’s sections. Most of all I look forward to Fi getting older so I can instill my love of books in her, spread my love of libraries and share my memories made in them while we make new ones together.
Parting note: if you are someone that wonders how libraries will stay relevant in a society where most everything is accessible online and via our phones, you should read the book Bibliotech: Why Libraries Matter More Than Ever in the Age of Google by John Palfrey. Palfrey explains multiple reasons that libraries are important, besides just to borrow books. There are a few other books I’ve read about libraries and their history and/or significance that I’m happy to talk more about if asked.
I read somewhere that hives and sweating were signs of recovering from topical steroid withdrawal. As I am finding myself developing hives on occasion and able to sweat more normally again, I sorely hope that that is the case and that this particular journey with eczema will soon be over.
But what does that even mean anymore? So much of my life has now been formed by eczema and going through topical steroid withdrawal that I can’t remember life without them as constant companions.
I dropped out of my clinical graduate program to avoid physical contact and other triggers to my skin, and instead went more towards the research-based side of academia, which derailed my initial streamlined plans.
I have seen all hours of the night as my skin raged: the itches of eczema and the topical steroid withdrawal heat flares and weeping skin. As a result I have learned to be flexible and take a good day at face value, to reflect.
I reconnected with and got married to a man more understanding about my skin and its flares than I thought capable which led to confidence about speaking up about my condition. And then had our magnificent little baby, which subsequently created an even more difficult paradigm for myself if the ambition was to return to the initial 9-5 job plans but caused me to find new passion (the postpartum period, library advocacy) and reignite old ones (writing, French, storytelling) which have started and continue to turn into new opportunities.
I poured hours and hours into self care and forgiveness and lifestyle alteration to be able to manage my condition and as a result became a calmer, happier person, though I also amassed a collection of products (and a product graveyard in my cabinets) and wasted money.
I developed a deep distrust for dermatologists and their lack of advice on the role of sustainable practices (such as nutrition/diet) and their quick fix mentalities. All I crave are conversations towards investigating correlations, and talking shop about safest management practices for the longterm.
I have learned the power of an anecdote, and how many kindhearted souls have advice to spare, showing the breadth of ways this condition is handled, but also that people care and want to help if they can. There still exists community.
Honestly, I’m not even sure what my identity would be if I am no longer plagued by this disease; it’s so much a part of me now it’s almost like having a second shadow lingering from constantly well-placed lighting.
And as a result I’ve developed into a completely different person these last 5 years, almost unrecognizable in demeanor and attitude from that healthy-skinned 22-year old.
I’ve had to learn to do things all over like figuring out how to exercise in ways that don’t trigger a flare, or how to manage symptoms when they are triggered by a social encounter, stress, or the weather. How to be okay with a body that is less than ideal and not as healthy as it was in the past.
Though I’ve had to give up a lot, I’ve grown from it and become a stronger, more introspective person who has had to work less hard to find others’ hidden untold stories. I’ve learned to be brave in my exposure, to hold my head up even when suffering, but also to acknowledge my own limits. I’ve learned to ask for help, and to accept it.
Who I am today is inexplicably linked to my experiences and in the last five years; I have been stained by this disease, this condition that requires so much sacrifice and change, but also so much empathy and strength.
As I stand back and reflect, I note that a quarter of my quarter of life has been influenced by eczema/TSW. A huge intractable part of me has worked to understand and accept this reality, and I will continue to do so, and see what happens next: what else I’ll learn and how else I’ll change.
What’s got both ridges and valleys
which tell time,
Can withstand the weight of mankind
but not for long,
Can be used for love or hate
and to experience the world,
Has languages of its own
but can also be quite mindless
Can lead to one’s destruction
or to one’s survival
Can be the epitome of cleanliness
or the harbinger of disease
Can create masterpieces
or deal with mistakes,
That most everyone has?