all posts, eczema hacks, miscellaneous, treatments, women's health

policy and innovation around skin

blur brainstorming business close up
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A long while back I came across this article called From IUDS to IVT – Designing for Women’s Health on medium a while back, by Emilie Lasseron. In a nutshell, she talks about the new innovations in women’s health and how it is important for creators in this realm to be mindful of their audience. Naturally I tried to pattern match this to blend into the eczema realm as well, to combine my two interests/where I’m at in life now.

Lasseron’s big 5 bullet points were to “design:

for passive engagement”, which was where she explained how we have a culture where we don’t really think about fertility until we start trying. This is similar to what we see with eczema (with eczema being a negative thing that people don’t try but experience). People don’t really think much about it, until it starts to take over and disrupt their way of life.

for myths, not just the facts”, in which she explained that we have to meet people where they are at, even if that means from a perspective that may be incorrect or grounded in myths. This is huge for eczema. From dispelling the idea that we have contracted some contagion, to explaining that no, coconut will not cure the skin, there are so many “old wives’ tales” and other myths to slog through that when talking to someone new to having eczema, it’s important to be able to calmly and concisely explain the basics and why some of the commonly heard remedies may be wholly ineffective.

for the conversation women want to have with their doctor”, in which she described creating tools to help women feel comfortable getting their questions out to doctors and to help them reclaim their agency. Which is also CRUCIAL with eczema. Patients with eczema are already feeling terrible about their skin. And so it is so important that they can feel able to openly talk with their dermatologist and not feel judged or scrutinized for their choices, where they are coming from in their educational journey, etc.

with as few assumptions as possible”, in which she talks about not assuming women know everything about their bodies (most of us don’t), and uses the example of a period tracker app that expected you to know your cycle length before you could sign-up (I never personally know how long my cycle is). This is like if there is an app made for eczema and it keeps requiring the patient to know exactly when the flare started, what we ate that day, how long we slept, did we encounter any new allergens, etc. It is hard to track all of these little life factors, especially if we didn’t think we were going to flare, or we are new to having to deal with severe eczema.

with side effects in mind”, in which she talks about making products that allow women to talk about/understand other side effects, an example being an app that tells you you may be more constipated during the luteal phase of your period. This would be the equivalent of an app that gets you to talk about various symptoms and co-morbidities of eczema like the oozing or the flaking or the infections, the isolation or depression, etc, so that it would be easier to identify:

  • one, what stage of a flare the person is in, and
  • two, what is most common, and therefore important to address (like increasing rates of depression).

All in all it was a fairly quick read and highlighted a lot of the innovation that is and needs to continue to happen within women’s health (and could be extrapolated to what innovation needs to happen in the eczema world too) to allow for better healthcare and treatment.

Speaking of innovation, I entirely missed hearing about this event: Make The Breast Pump Not Suck, a hackathon that happened in Boston April 27th-29th last year. It was hosted to try to address not just pump technology itself, but policies around maternity leave, breastfeeding spaces at workplaces, what barriers to breastfeeding exist, how to build community engagement, and getting stories from different women about their experiences. There were also community innovators mentioned who are doing awesome things in the field of women’s and maternity health (see here), including one in Boston called the Neighborhood Birth Clinic! The group is trying to open a free standing birth clinic in Dorchester. The event also highlighted different independent innovators like Melissa Hanna who created Mahmee, a secure platform that lets providers coordinate healthcare of both the prenatal and postpartum stages.

My dream is that there will be hackathons and the like for innovations with eczema too, besides just the Eczema Expo. And hey, if not, maybe that’s what I’ll work to pioneer one day.

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featured on social media…

close up of smart phone
Photo by Pixabay on Pexels.com

I forgot to mention that Dove’s Derma Series featured one of my Instagram posts this past December.

I love sharing my story and trying to help others understand what it’s like to live in my body and also be a mom, so I was thrilled this happened.

Here’s the link to it if you’re curious.

 

all posts, miscellaneous, the eczema body

hello 2019!

photo of person holding sparkler
Photo by Malte Lu on Pexels.com

Hello hello and welcome to a new year!

I promptly abandoned my blog for a few weeks because things got crazy. We found an apartment in the city (the city proper! I’ve never lived in a city city before), got all the background checks done, hosted my parents and Jake’s parents and my sister for Christmas, packed up the house and moved out (more or less), moved into our new place, and have been rearranging and unpacking and cleaning it since. It’s a bit of a downsize from our house (but that’s not saying much as our house was huge for us) so we’ve had to get rid of lots of stuff. It’s shocking how much extra junk you accumulate just because you have the space. We are taking measures to not repeat that behavior in the apartment, and its smaller size should help.

How have you all been? How is your skin fairing?

For me personally I had a few waves of flares but now I am officially in another flake out phase. I got some idiopathic hives the other day, which according to this study, are signs of healing, along with excessive sweating. I am finding myself to be sweatier at night and sometimes randomly during the day so hopefully that bodes well. Also my skin is getting more soft and skin-like again. Even Jake has noticed. This feels quite exciting!!

I’ve been thinking a lot of about healthcare and treatments for eczema, and medicine as a field in general when I came across this article from 2014 done by the National Eczema Association that embodied some of my thoughts about the care around topical steroid withdrawal (or topical steroid addiction, TSA). The discussion section of the paper brought up a lot of interesting points, including:

Some patients believe their eczema will heal only if they never use TCS. In fact, this healing may happen because atopic dermatitis has a tendency of self-healing, and possibly TCS use may disturb this self-healing process… Did the number of patients with adulthood atopic dermatitis increase after dermatologists began to prescribe TCS several decades ago?

This is so important to think about because it does make you wonder if topical steroids are necessary to treat eczema early on (when it’s acute and not severe). Or have we as a species been warped into this idea of needing flawless-looking skin, causing us to apply whatever to our skin to make it look good, regardless of the consequences? If you think about it, we are the same species that has invented spray-on tans, skin whitening creams, chemical blemish removers, etc to use even when our skin is functionally perfect but does not meet the notions set in our head of what we believe we are dermally supposed to look like.

And the question of whether or not the number of people with AD has increased since the advent of TCS prescriptions is dead on with what I have been obsessed with trying to figure out. Now, I admit that I straddle a weird line in my head between being totally into medicine and its innovations for human health, and being a completely off-the-charts ‘let’s return to nature, cuz nature knows best’, roll -around-in-the-mud-to-build-up-your-immunity type person. Yes, it’s a confusing place in my mind, but in reality it just makes me question anytime anyone on either end of the medicinal spectrum (allopathic to holistic) tells me “this is the right thing to do”.

As such, I still wonder if our species’ conquest to protect ourselves from the baddest of bad germs, and our inventions of things like pasteurization and homogenization, have unintentionally messed us up because we are now too sterile and our bodies don’t spend the necessary time attacking pathogens, and instead have all this time to turn on us, and find fault in things they shouldn’t find fault with, with each successive generation feeling it worse and worse.

But how do I reconcile these kinds of thoughts in my own head? Do I only drink raw cow’s milk, and refuse to drink anything commercially produced FDA-approved milks? No. Does it mean I try to create a balance of bacteria by including less commercial and sterile food and drinks in my diet (e.g. kombucha, kefir, sauerkraut, yogurt)? Yes.

With the skin stuff, a similar attitude prevails. Lots of sources say you shouldn’t take hot or long showers/baths, and that you shouldn’t even bathe daily especially if you are trying to let your skin heal (since bathing is innately drying to the skin). This goes against the common cultural attitude that we as humans should be bathing everyday and it’s gross if you don’t. Does this mean I question when people tell me I need to shower daily, even after I’ve done nothing but sit on a couch for a day and haven’t sweat at all? Yes. Does it mean I refuse to shower for days at a time, even when I know I smell bad or have exerted myself and sweated? No.

I personally do shower daily these days, mostly to help rid myself of dry skin that’s flaking off. However, I rarely use soaps (too harsh on my skin), and instead I bathe in various things a few times a week (apple cider vinegar, really diluted bleach, epsom salt, etc). Actually, I’ll tell you a secret. Neither me nor my husband uses shampoo or conditioner anymore. I’m mixed race, so my hair is dry anyway and shampoo has always been a cultural no-no, but my husband is white and at first his hair was greasy when he discontinued shampoo. But now, it’s not. Over time his hair adjusted as his scalp stopped producing so much oil since he wasn’t constantly washing it away. Neat huh?

Also, though I won’t flesh out the details unless it happens, I also have something new in mind for the Feral Scribbler. Call it a New Year’s resolution… though it’s not tied to this year and isn’t a new idea, and I don’t really do new year resolutions… but besides all that, it is definitely something exciting. So cross your fingers for the surprise to be realized and stay tuned. My only hint is it would potentially address an idea from within today’s post.

And with that mystery instated, I bid you adieu and wish you well into our new year.

 

REFERENCES

Fukaya M, Sato K, Sato S, Kimata H, Fujisawa S, Dozono H, Yoshizawa J, Minaguchi S. Topical steroid addiction in atopic dermatitis. Drug Healthc Patient Saf. 2014; 6: 131-138.

Sheary B. Topical corticosteroid addiction and withdrawal – An overview for GPs. Australian Family Physician. 2016 Jun; 45(6): 386-388.

all posts, eczema hacks, treatments

moisturizer withdrawal for eczema

person pouring plastic tube bottle
Photo by Moose Photos on Pexels.com

Moisturizer withdrawal (MW) is a hotly controversial topic in the field of eczema (especially in regards to topical steroid withdrawal). The medical community generally is anti-MW, while there are some specific doctors and communities that are very much for it.

Some of the pros I’ve read about on giving up moisturizer include:

  • moisturizers seal in heat, which makes going through eczema/topical steroid withdrawal more uncomfortable
  • your skin produces cortisol naturally, but adding moisturizer can suppress this production (more on that in a bit)
  • you are losing so much skin (more in reference to TSW) that you don’t want to try to lubricate the dead skin and slow your body’s attempt to rid itself of the old tissue
  • most moisturizers have something in them (usually to help them be more shelf stable) that does not help the natural skin biome. As such, they may hinder healing because more resilient skin bacteria, ones that can survive the pH and chemical changes created by said moisturizers, are usually not the benign ones

I then proceeded to go down a rabbit hole in studies trying to understand more about the skin and its own ability to create cortisol (again this was more in reference to trying to understand how to overcome TSW more easily/quickly). The rabbit hole led me to read about keratinocytes and how our skin reacts to stressors.

Keratinocytes (a type of outer skin cell) can create cortisol in response to adrenocorticotropic hormone (ACTH), as studied in cultured keratinocytes (meaning keratinocytes on petri dishes or other lab-made mediums) and in human skin samples. Keratinocytes also make glucocorticoids (GCs) which are known to block wound healing, but also block pro-inflammatory cytokines (something we know run rampant in those going through topical steroid withdrawal). So, it’s my thinking that the GCs could help as a balancing factor with the excessive inflammation that comes with eczema and TSW. The amount of cortisol produced also changes in response to things like trauma and UV light and dryness. It was the dryness that intrigued me because with conditions like topical steroid withdrawal, we are taught to combat it by applying more moisturizers to prevent dryness, but what if that is decreased the skin’s ability to hit a homeostatic level and kick up its cortisol production?

In Japan, there is a doctor (Dr. Kenji Sato) known for his treatment of eczema and topical steroid withdrawal, and he works in a hospital (Hannan Chuo Hospital) on a program where people enter specifically for TSW and then they stay for an average of 40 days or so and then leave, supposedly healed. Note, they are healed from TSW, but they can still have eczema flares, though those usually aren’t as bad. I’ve been curious about his treatments for a while, especially because the regime doesn’t require strict diets, and the main things it requires are keeping your nails really short, exercising everyday, and not using any moisturizers (no soap, no lotions or creams or ointments, and any showers must be shorter than 1 minute). For those interested in the hospital, there were two comics I came across a while back that tell stories of what it was like to be a patient at this hospital. The first is done on the artist’s personal experience, and the second was created after an interview with a fellow patient.

Personally, I am starting to think moisturizer withdrawal may be the way to go (for myself). I’ve noticed that I itch horribly after baths and sometimes showers, and itch even worse when I put on my lotion or creams on wet skin (which is usually the recommendation of the medical community to help seal in the moisture). To be fair, I do tend to take baths/showers that are too hot by those same medical recommendations, but water tends to cause me pain at any level of exposure so I think I enjoy hot water because it’s a different pain sensation so it blocks out the burning of open wounds.

After thinking about it, as it is currently winter in Massachusetts, this would be a terrible time to go through moisturizer withdrawal. My skin tends to fissure something horribly when it’s dry and especially in winter/when indoors with the heat on. I will think about going through MW in the spring/summer and post about a 40 day trial then.

 

REFERENCES

Cirillo N, Prime SS. Keratinocytes synthesize and activate cortisol. J Cell Biochem. 20011 Jun; 112(6): 1499-1505.

Zhu G, Janjetovic Z, Slominski A. On the role of environmental humidity on cortisol production by epidermal keratinocytes. Exp Dermal. 2014 Jan; 23 (1): 15-17.

Vukelic S, Stojadinovic O, Pastar I, Rabach M, Krzyzanowska A, Lebrun E, Davis SC, Resnik S, Brem H, Tomic-Canic M. Cortisol Synthesis in Epidermis is Induced by IL-1 and Tissue Injury. J Biol Chem. 2011 Mar 25; 286(12): 10265-10275.

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winds of insomnia

selective focus photography of tree leaves
Photo by Egor Kamelev on Pexels.com

Tonight the wind is whipping itself into a frenzy. Maybe there’s a storm, or maybe the tail end remnants of someone else’s storm are wagging on by.

I could get out of bed to peer into the darkness. But who knows what I’ll see there.

Sometimes familiar sounds assault my ears, out of place because I think them to be impersonations of their true selves. The undertone of the vibrations of a passing train, the shudder of corrugated metal, the warble of large plastic garbage bins fending for their own in the facsimile storm.

Sometimes the wind redirects and smacks right into my bedroom window, like waves of air splashing against up their own beach. And sometimes it sounds like the light drumming of someone tapping to be invited inside. Either way, I check it not.

The ever present low roar of the wild wind makes me think I am on a boat, lost at sea, but a sea ofair, like some kind of fantastical adventure that just waits outside my window.

The broiling wind continues to rush as though gushing from an undetermined source after a few well-aimed pickaxe swings into the stony ground. Only this flow is not stopping. There is no felled dam that will eventually be emptied.

Much like it started, the wind will dry up without a clear end, and I will forget it happened at all as the memory corrugates with other past memories of late night un-stormy storms.

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a community is like a spider web

spider web formed on green leaves
Photo by Johannes Plenio on Pexels.com

Jake and I had been talking when he said something that made my brain go “OH!” and basically re-wired years of misguided searching. What he said to me was, “I think you are confusing community with suburbia. You grew up in a suburb, but you had a community… most of the time suburbia is not synonymous with community.”

Now that may seem obvious to you readers, but for me it was an eye opening moment. For years I have waxed poetic about how and where I grew up, equating the two in my mind and constantly yearning to find that again as an adult, in a new place. We actually currently live in a suburb (though a weird one because it acts like a seceded city from a larger nearby one. It also gets terrible amounts of run-off traffic that only a coastal town abutted by a huge city can get).

When Jake said that to me it hit me that that was what is missing from here versus where I grew up. I lived in the same place from ages 11-23ish and got to re-invent my life in my community over and over again. I had friends in the area sure, but even after many of them came and went I had their parents, my neighbors, new co-workers with whom often shared people in common who we knew, random encounters with townsfolk, etc. The life felt interwoven and connected despite me spreading my wings in multiple literal towns.

So while I was taking a bath today I was thinking about my community and what it takes to have one and why I don’t have one here. Some of it is definitely a product of time. I have only lived in this town for 10 months now, most of which I was pregnant for or had just given birth, and for all of it I was sleep deprived and battling topical steroid withdrawal. So yes, I haven’t been spreading my roots as aggressively as I could have. I started out strong: when I moved here, I baked cookies and delivered them to neighbors’ houses with hand-sketched phoenixes as a weird get-to-know-you thing; and then I also made it a point to meet all the librarians during multiple library visits, and also explored the farmers market on occasion. But then between my physical condition and my pre-to-post baby phase, I grew tired.

That and was hard to establish a deep connection when one is in different stages of life. Our neighbors are mostly all parents with kids who are between 9-19 years old, and the parents themselves are probably all in their 40s (I’m guessing). Many of the parents include one of the couple who is a state native, and if not born-and-bred in this town, they were probably born in one within a 15 mile radius, and thus lots of them have family around. Many of them are working, or randomly gone a lot of the time so it’s always a chance encounter when I do see them.

It’s also just a different type of town than what I grew up in. This is car community. I’ve tried to make it walkable to the extent that I love, but the sidewalks end randomly and the roads are hilly and windy, and people tend to speed aggressively. It was fine when it was just me on foot, but with Fiona in her stroller I just don’t feel as comfortable.

But how does this relate to a spider web? And why am I thinking about spiders when I have such a phobia of them? Well, I’ve been reading a lot of southern-set books lately (first ‘Midnight in the Garden of Good and Evil’ by John Berendt and most recently ‘The Prince of Tides’ by Pat Convoy), and the one thing they have in common is a deep-seeded love for their environment. They talk about the flora and the fauna and the smells and the colors as an important part of the experience around the stories they weave.

In The Prince of Tides (which is fiction), there is a background story within the story that talks about how black widow spiders helped save the family from a murderous intruder (because the children released the spiders all over said intruder) and how afterwards the family never killed another spider again, and it made me think about spiders and my own fear of them. Then when Jake and I were discussing community, I thought to myself, “hey, a community is kind of like a web” and that led to this post.

A community is like a web. And by this I mean that the ideas behind a web almost fully apply (if taken with creative liberties).

A web is built slowly over time,
One thin gossamer strand at a time
With the determination of knowing what it should look like
But innately, without blueprint,
With knowledge of its fragility
And understanding of the need for constant adjustment
As bugs and debris and miscellaneous items rend it broken.
It is made over an existing space
Be it flora, or the existing corners of a barn
Or something in-between
The web does not exist without some sort of baseline structure
But it can be recreated over and over again in new places
As need demands, thread by thread
Again and again as it suits the needs of its creators

Anyway, that’s where my mind was roaming today. I think it’s also why I yearn to move back to my parents’ area. I found a community I liked and now I just want to return to it so Fiona can experience it too. Maybe that’s lazy, but I make no excuses for it.

all posts, community, miscellaneous

dolly parton and body positivity

Screen Shot 2018-12-13 at 2.38.24 PM
Cover photo from Variety 

The other day I watched one of those Netflix originals movies called Dumplin’ (based off a book of the same name by Julie Murphy), and for some reason it just grew more and more on me and I actually ended up watching it twice in a row (the second time because I wanted to share it with Jake). I’d say I was drawn to the film because it depicted a coming-of-age story and body positivity in a better, more realistic light. Rather than stick to tropes about the misunderstood teenager or underappreciated mom, the story came into its own by the protagonist teen learning to accept her reality (being overweight) and not let her own misconceptions color or limit her life experience. I know that’s vague but I am attempting to avoid spoilers for anyone interested in watching it.

A majority of the movie characters also fan-girl over Dolly Parton and use her songs and words as inspiration to live their best lives, such as:

  • “find out who you are and do it on purpose”
  • “you’ll never do a whole lot unless you’re brave enough to try”

among many others that pepper the movie with external applicability and general charm. The whole point of the movie, besides family bonding, was to show the importance of developing confidence and trust in who you are and those in your life who support you, even if you don’t understand how or why.

I feel that this resonates so strongly with living with eczema. It can be a constant battle to accept yourself in this skin, and not assume everyone is silently judging you or that you don’t belong. However, it is also crucial that such feelings don’t stop you from being genuine and always trying, even if it feels uncomfortable. And as for those supporting you, you have to be able to accept that they see you beyond your skin, because the skin you’re in doesn’t define who you are.

I personally don’t know much about Dolly Parton, but after watching this movie full of her quotes and songs, I am inspired to learn more about her and listen to her music, especially if I’m ever feeling down. Dolly Parton fans feel free to throw out recommendations.

I also inexplicably wondered what it would be like to have regional eczema balls (the dance kind), that allow those living with eczema to let their metaphorical hair down and mix and mingle in a somewhat formal setting to create their own sense of magical community and touch of the unexpected. Actually I do know how that got into my head. I had been talking with a friend who got into dancing and it just felt like something that could be a lot of fun. Just imagine if you had a room full of understanding people who get the red-skinned, elephant-wrinkled, constant itch and snowflake life, and so they can all dance despite it, no worries, just silliness.