“have you tried…?” survival guide

Yesterday was my 27th birthday. Yes, I know it’s not my eleventy-first birthday or anything, but I am going to impart my own bit of wisdom from my meager years of life. Also from November 1st through New Years is Tolkien season for Jake and I, so expect a lot of references.

In these 27 years I have often heard the question “have you tried…?” in regards to moisturizers and supplements and all manner of things that one might think could help me with my eczema. While all good-intended, I think there needs to be a narrowing of the question so that it is focused, and therefore more easily answered.

What I mean by that is, when someone asks, for example: “hey, I noticed your skin; have you tried using coconut oil on it?”, a potential answer on my (or any eczema-living human’s) end could be “have I used coconut oil for what purpose?”

That first clarification requires the questioner to expound upon their thoughts. Are they asking because my skin is dry? Because it’s red? Because it’s itchy? Because they think they have an idea to balance out my skin microbiome and kill potential S. aureus overgrowths? It lets the question receiver have a context to delve into to make the initial question into a conversation.

One misconception about eczema is that it’s just dry skin. If it was just dry skin, yes, using virtually any (nonalcohol-based) product probably would help alleviate the problem. However, eczema is more than its visible crocodilian facsimile. It is an autoimmune disorder, meaning there’s a underlying cause for the external appearance, and so though you can help the condition by addressing the skin issues, the idea of there being a blanket  solution in the form of a single moisturizer ends up feeling a bit naive and potentially frustrating.

So a gentler way to education about the various aspects of living with eczema is to require the questioner to be more concise. If they are thinking “oh your skin is so dry… you should try (insert moisturizer here) to help” then we can get somewhere because we can be like “yes that may help the dryness but I also suffer from other symptoms of eczema like skin sensitivity, and so I can’t use (insert moisturizer here) because my skin reacts poorly to (insert an ingredient)” or answers of that nature.

If someone asks if you’ve tried a product because of your skin’s redness/inflammation, you can respond in kind with “no, I haven’t. How does this product reduce inflammation?” and learn something new. Or you might have the opportunity to respond with “no, I haven’t tried it but I’m working on reducing inflammation via diet right now, eliminating sugar and whatnot and reducing stress”.

In a nutshell, if we can get the questioner to be more precise with why they are recommending the moisturizer (or whatever product type) for, then we have a chance to have a deeper conversation about what we’ve tried and our logic for why we tried it, and also increase everyone’s health literacy, including our own. And you know me and my love of increasing health literacy. 

So speaking of health literacy, here’s a list of common eczema symptoms that can be inserted into the question receiver’s responses to help figure out what the questioner is trying to address:

  • dry skin
  • flaky skin/peeling
  • redness (rashes)
  • inflammation
  • skin heating/flushing
  • itch (of course)
  • fissures/skin cracking
  • wrinkles
  • bumps/acne (often due to scratching)
  • excessive palmar lines (a fortune-teller’s nightmare) indicating a lack of filaggrin protein
  • sores
  • weeping (usually from the open sores)
  • insomnia
  • infection risk (again from scratching, but also just from having a compromised skin barrier)

And with that short post out of my head, I’m now off to enjoy my birthday week (as I spent the actual birthday day driving in the car 8ish hours to visit my parents).

Catch me off blasting my parent’s retro speakers and dancing around the house like:

And/or probably heading out to enjoy yet another of the Harry Potter world movies, Fantastic Beasts: The Crimes of Grindelwald. Can I just say how much I love that they come out around my birthday time, and have been since I was in second grade?

I’ll be the one sitting in the theater all giddy like:

on libraries

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Photo by Element5 Digital on Pexels.com

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.

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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.

here’s the skin-y

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Photo by Dom J on Pexels.com

Who am I: I’m a woman with eczema. I love reading, gardening (mostly indoors lately, as I live up north), writing, playing music (though I am a bit out of practice for both viola and piano), daydreaming, sunshine and warm weather, exploring areas by foot, watching horror movies with my husband and constantly talking through them, engaging in random bursts of physical activity, being ridiculous, and spending time with family and friends, and of course, storytelling.

My eczema history: I’m one of the people who was born with eczema where it initially only bothered me on the crooks of my elbows and knees, but as I grew up it progressed. Winter 2012 I had my worst flare and a Staphylococcus aureus infection (as discovered by a fluid sample from a lymph node in my neck). I believe that was the first time I went on both oral steroids and antibiotics. Since then I have had intermittent periods of flares of varying lengths of time and degrees of severity. I have been suffering from multiple occurrences of topical steroid withdrawal periods (the longest being out 13 months) and had tried various dietary modifications (avoiding gluten, avoiding legumes, avoiding dairy, eliminating added sugars). Currently I am only doing one dietary change- reducing added sugars. Throughout my eczema journey, I’ve underwent many of the traditional routes to managing the flares, corticosteroid creams/ointments, oatmeal/bleach/epsom/essential oil baths, vaseline/eucerin lotioning, repetitive lotioning, phototherapy, antibiotics, prednisone, gluten-free/dairy-free/sugar-free/legume-free diets, seeing a naturopath, taking supplements/herbal medicines, the list goes on and on. Though I’m sure some of those solutions work for others to help manage their skin issues, the long-term result is that I still have flares and that I need to learn to control said flares in new ways, because unfortunately there really are no individual guidelines when it comes to eczema. As I was briefly a graduate student in a physical therapy doctorate program, I have been using what I learned to try to apply the concepts to my own life in regards to eczema management. I have been wondering about a few other alternatives to do to help my skin during a flare, inspired by things I’ve learned while still in PT school, and I’ll post about them over time.

Other related health stuff: I have allergies, some I was born with (food ones) and some that I developed over time (animal). The foods I am allergic to are peanuts, pistachios, and cashews; environmental factors are mold, dust, grass; animals are cats, rabbits, some types of dogs. I also have a history of asthma, though I’ve been fortunate enough to have mostly outgrown it, and haven’t had to use an inhaler since I was 8.

Impact of eczema on my life: How has eczema has affected my life? I am a person that has eczema over my entire body (at least since 2012). It changes which areas are the worst, but in general, all my skin gets impacted when I flare. This has altered my exercise habits (sweating during a flare can be intolerable), how I can sit/relax (certain materials or positions cause my skin to heat up and rash more), whether or not I can sleep through the night (my skin heats up at night and my core temperature drops so I end up feeling cold while my skin feels hot, damp, and rashy ), and what my daily life habits are (I tend to itch worse when waking up, after a shower, after applying lotion, when sitting for a while, in cold rooms). The largest change I took was deciding to leave my physical therapy doctorate in 2017 program because I wasn’t sleeping, couldn’t handle manual manipulations due to necessary skin contact at times, and because I was more prone to infection from contact with healthy skinned-people who carry Staph.

What I am doing now: I have since switched into a Masters of Health Studies and am building my program as I go along. Professionally, I’ve started thinking about how to build my own company of providing information assistance to health-related businesses, nonprofits, etc. Currently, I am an intern with Eradicate Childhood Obesity Foundation, where I do anything from grant writing, to outreach, to basic website design, blog writing and editing.

Dreams: One day I think I’d like to start my own nonprofit related to addressing health disparities in communities and increasing health literacy. I’ve also had a long term dream of becoming a librarian (but more so a feral librarian, meaning a librarian that isn’t formerly schooled in a librarian sciences education) to use the opportunity to expand what people think libraries do to showcase the real potential for community outreach and modern change that libraries can hold. Bridging the two dreams, maybe I could create a nonprofit health library that offered services such as the ability to “check-out” doctors and health providers for general consultations/patron questions, as well as rental spaces and exercise equipments to host fitness and activity classes, and education seminars on various important health topics and new research.

Weird unrelated hobbies: I enjoy setting up for parties by lightly theming a room, and then leaving it like that indefinitely. Some favorite inspirations for decorating are Harry Potter and Alice in Wonderland.

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