It’s currently 3am and I’m awake despite the little one actually having been asleep since 830ish.
“Why on earth are you awake?”, you may be asking yourself, and rightly so.
Well let me tell you, internet reader. I am hot.
Now though the ambient temperature in the room feels cool, I know I set my thermostat a bit high (in my defense, with the skin disorder I’m usually always freezing, and the baby likes it warm too). However, I am not sweating. I’m just really warm. Warm enough to sleep in just a t-shirt and underwear, which I haven’t done since before my skin declared mutiny on my body (circa 20013?).
So as I’m over here pondering my existence in a semi-lucid state at 3 in the morning, the question that keeps popping up on the forefront of my mind is: this heat, what does this mean?
What does this mean? I’ve got a few theories.
My skin has shown an unprecedented amount of healing lately. I have soft skin on my face, stomach, back, and thighs. Perhaps I have done the majority of my topical steroid withdrawal pemance and am finally seeing the results, aka having skin of normal thickness and elasticity and with the ability to retain heat and moisture. Maybe. Or, maybe,
I have finally hit the point where, despite still breastfeeding (which can delay this), my hormones are kicking back in, and I am soon to rejoin the ranks of menstruating-aged women. In which case, hormones could be the culprit for my heated sleep body. Or, perhaps,
My circadian rhythm is so butchered from having to wake up at all manner of times during the night shift for the last 7 months (more if you count pregnancy months too) that my body doesn’t know what to do with un-externally regulated sleep interruptions, and so in a desperate attempt to keep its new status quo, it’s driving me awake via continued thermoregulation fluctuations. Maybe that’s it.
Or maybe it’s some culmination of the three of those things because as is often the case with complex systems like humans, we don’t always have a simple solution.
At any rate, I’m enjoying the fact that my little one is getting so much sleep, and that I’m getting some silky smooth patches of skin. I’m not stressed and as I am awake I am making sure to hydrate, so I’m sure in time I’ll learn to sleep again. So c’est la vie et bonne nuit (that’s life and good night).
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.
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.
With everything that’s been going on, I completely forgot to note that it’s been a year since I’ve been off topical steroids!
It was about this time last year that I found out I was pregnant and thus decided to give up topical steroids cold turkey. I had read that using them during a pregnancy could result in developmental delays of a fetus (if using too strong a dose for too long, or over too large of skin surface area), so instead I decided to completely cut it all out. Long story short, my eczema has been complicated by topical steroid withdrawal since that point, like I’m on some sort of a topsy-turvy roller coaster ride.
In fact, last night I had to have Jake cut my wedding band off my finger because my finger got so swollen and neither ice nor lubricants helped bring swelling down or get the ring off respectively.
It was a sad and frustrating moment where I realized that despite all my perceived healing, I still cannot even wear any jewelry (minus my tragus piercing, which I think is only fine because it’s an area of the ear that has more cartilage than skin or nerve endings).
Necklaces, earrings, bracelets, everything else tends to bother my skin (or be scary to wear like in the case with the ring yesterday).
I’ve also been struggling with bouts of intense nighttime itching, which has resulted in me scratching myself open more, (even when wearing gloves) as I have less mental fortitude to prevent myself from doing so late at night. The worst I’ve done so far was on my leg the other day, which definitely warranted some wound care attention.
I remember as I scratched that I felt it start to weep but it was still so excruciatingly itchy, almost as bad as when I get hives, that I couldn’t stop.
So what’s a girl to do especially with the winter onset and the heater constantly running? Make a skin plan of course!
My current plan is as of now comprised of the following steps (in no particular order):
Get a new dermatologist (we’re moving soon) and make sure to request bloodwork and a skin prick test (the latter if my back can stay flare-free enough to do so)
Research about best emollients and supplements that include essential components for skin and skin healing (like ceramide and filaggrin) and confirm with new derm
Consult an herbalist to work in more herbs into my diet, bath, etc and to help address my sleep issues more naturally
Figure out more about the endocannabinoid system and what else helps it besides CBD oil since said oil is quite pricey
Take the dermatology technician certificate to get a better clinical understanding of dermatology and what doctors think (without having to go to med school and then through a dermatology residency)
Get myself moving more again. Brave the cold and go for more walks and seriously get back into intense yoga because it helps
Avoid all added sugars including honey and maple syrup until my inflammation has dissipated a bit more
Contemplate seeing a psychologist to address my excoriating disorder and stress issues
Fix my diet overall which includes following seasonality, eating a more diverse array of vegetables, and keeping track of what I eat too
Read more books on eczema including ones whose contents I am on the fence about
Learn more about newer treatments including dupixent and eucrisa
Get my life together enough that I can participate in calls in the online eczema community program I am involved with
There are probably more pieces of my plan that I’ve forgotten and a better step-wise way to present them but I’m too worn out to care right now.
Sometimes the constant skin drying out or the fear that what I ate is hurtng me, or the annoyance at having to adjust so many commonplace day-to-day activities like how my husband can touch me or how I can hold my baby really get to me. I can see why it’s so easy to turn to a medication that can quickly get rid of symptoms, yet for many of us, our skin conditions have become the result of such medications, which feels like a betrayal of the modern medicine world, like science has failed us.
I need to do a post on topical steroids soon, and how they work, and then read and talk about how the newer medicines on the market work and how they are faring. There is no miracle cure to illnesses and quick acting solutions can come with a price. It seems more and more important to show that there will be some level of struggle involved for those unlucky enough to be susceptible to this kind of condition.
Over the years I have gotten so much advice from well wishers about how to cure my eczema/topical steroid withdrawal (because in my case, the condition that changed my life was TSW, which was caused by the treatment of eczema). While some of the suggestions may be useful, more often than not they aren’t, and it may not be because the advice is something I’ve already tried or something outlandish. It may be more so because advice about a single aspect in my life to change doesn’t do anything impactful, because eczema’s root cause can be anything but singular.
I know some people are lucky: they remove the allergen (mold, gluten, soy, eggs, nightshades, dairy, dust), they decrease their stress, they exercise more, they find a supplement that really works, and bam, no more eczema. Unfortunately, I am not one of those people.
My root cause seems to be tied to many different aspects, from overuse of topical steroids, to unresolved emotional issues after familial deaths, to increasing sensitivity to foods (on top of food allergies I was born with), to increasing discomfort with specific exercises and a sensitivity to heat and sweating, to insomnia and other sleep issues, etc. So being given a new product to try doesn’t really solve the other issues preventing me from quickly recovering from each flare.
What I do find interesting, is people that have learned to live with eczema (and/or topical steroid withdrawal) and the various lifestyle changes they have done to help keep their flares under control. I came across a post a while back called The Metaphysical Meaning of Eczema – Do People Get Under Your Skin, which I thought would just be talking about how my emotions cause my eczema, but I was pleasantly surprised to read the author’s inclusion of a whole host of other things she does in her life to help. Because yes, I am sensitive, both skin-wise and emotion-wise (I can now flare-up from heightened nervousness from public speaking, or due to misunderstanding over trivialities at the store) but, and I am indignant about this, my sensitivity didn’t cause my eczema, and it definitely didn’t cause my topical steroid withdrawal. It probably is the reason it takes me so long to heal (on top of the constant flow of changes in my life… e.g. getting married, moving 4 times, leaving my graduate program, buying a house, having a baby- all within the last 3 years). I have learned to be zen about skin-related sleep deprivation, about hives from foods I normally can consume, over having to adjust all forms of activity I enjoy, over forgiving myself for making “mistakes” that then provoked a flare, etc. I know I still have a ways to go to consistently help my emotions flow naturally and not build up stress, but I have made immense progress and my skin doesn’t always reflect that. Hence why I get up in arms when people try to reduce my condition down to me “just not doing x”.
Woof, okay so now that I’m done that rant, back to my initial idea around today’s topic. The point is, eczema can be a multifaceted b*tch of a condition, with varying twists and turns that dictate how it goes for different people. If you don’t believe me, try reading the experience of Daniel Boey in his book Behind Every Itch is a Back Story: The Struggles of Growing Up with Rash, or peruse any number of personal blogs out there these days about someone going through TSW.
My point is that while I am happy for people who find ways to rid themselves of eczema flares through a singular method, I find it frustrating when we see the gimmicks of “anyone can cure their eczema if they just do x!” and find it somewhat damaging to reduce all people with eczema into the same world because said singular solutions don’t work for everyone. I appreciate people that talk about the myriad of changes they have had to do, because it shows that the cause of eczema, as it is still unknown for the most part, requires different management for different people, hence why it is so hard to “solve”.