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).
The little one is beginning to have a routine emerge. So far she fights all forms of sleep training and instead functions on a growing stable sets of principles.
Bedtime is 9pm.
Midnight to 2am is the start range for the late-night meal.
5am-6am is the start range for the early morning meal, but a second attempt at sleeping afterwards will be successful.
6am-8:30am is the relaxed independent wake-up time range where self play is initiated until boredom or some confined position occurs and it’s time to wake up mom.
At the moment, I don’t really mind this schedule, save for experiencing the skin drying out feeling each time I wake up. The apartment has central heating, which equates to forced air from ceiling vents, which feels great but does tend to dry me out especially as I’m up three times each “night” period. I have a moisturizer by my bed (which I’m starting to think every non-moisturizer withdrawing person should do) so every time I get back in it I reapply to all my problem spots (feet and hands primarily, but also knees and elbows).
It’s annoying because we’ve officially hit that time of year where there’s a consistent wetness in the air outside, and temperatures vary from 40 to 14 Fahrenheit. As a result, my skin gets damp and itchy, I’m constantly bundling up to stay warm, and I can’t keep moisturize on my skin to save my life.
But back to Fiona. Last night she fell asleep at 7pm instead of 9pm (which was a feat in itself and aided by the fact that she hadn’t napped since the morning). What was the result? Feedings at 9pm and 3am, and we’ll see where the terminal night feed lands, but I’d guess it will be around 5am now.
I think it’s fascinating that she has her own internal clock developing. She has never been a great sleeper but she is slowly adding hours in like with a late morning nap she eventually takes that lasts from 2 to 3.5 hours. At first I was really frazzled that she didn’t do what all the books and sites say, which was to settle down around 6pm and be asleep by 6:30/7pm consistently, but then I realized it wasn’t helping either of us that I was getting stressed out when no amount of routining could successfully have her asleep before 8pm each night. She also got so inconsolable with our few day stints of attempts to sleep train her, and it would carry on into the next day. When I finally stopped trying to get her on the “normal” schedule, she got happier, so I got happier, so she slept longer, so I slept longer, and my skin started to heal more- winter dryness and all.
That had been a hugely frustrating part of this new baby life. There are so many external pressures to have a baby that conforms to the general standards that society has deemed the norm, that when yours doesn’t, it can be so mentally taxing.
For example, so many of the pediatricians I saw told me Fiona was too small, therefore not eating enough. The newest pediatrician pulled up the growth curve and showed that Fiona was tracking perfectly for a baby in the 5 percentile (aka she is growing consistently, but is a small baby as far as “norms” go). But instead of understanding that for the first 6 or so months, I lived in fear that I wasn’t feeding her enough, but also knowing that I was on the most hypoallergenic diet I could be (no dairy, soy, gluten, eggs, rice, oats, corn) and that breastfeeding reduced her risk of getting eczema. It was a vicious mental gymnastic I had to contend with, with every comment about how small she was, or every assumption that when she cried that she was hungry, really sucker punching me in the gut. It amped my stress levels up so much and so it is little wonder I had stagnant skin healing for months (on top of fluctuations in my amounts of sleep).
But now, though some of the old thoughts still rear their ugly heads, I have found more peace with the situation, especially as I see Fiona make developmental milestones. And subsequently new calmness is helping my lizard skin slowly regain its shine, even if this north east winter is trying its darnest to dry me out.
When you’re young you fly on this invisible tether, unaware of the fleeting nature of your adventure, how you will not always be there, balanced confidently but precariously.
I often think back on my journey living with severe eczema and immediately I remember the onset of the first cascade of knocked-me-off-my-feet-and-never-found-solid-ground-again topical steroid withdrawal symptoms and think that was where it all began. But it’s just not true. Even when I was young (under 14), active and energetic, there were moments when eczema was already blossoming under the surface.
I remember hiking the presidential range with my uncle, his girlfriend (now wife), his cousin, an uncle-esque family friend, and my sister. When we reached the last cabin closest to Mount Washington, I recall the cold as a storm rolled in and remembered vividly when I washed my face in a cold bathroom in the morning with chilly water, I felt the creep of a growing itch under my skin.
Nowadays I know that there can be many triggers for eczema including temperature changes, but then, eczema was a weird seasonal rash that showed up only on the insides of my elbows, not on my face. I think my thoughts at the time were something along the lines of “oh, I must have eaten something that was contaminated lightly with peanut fragments”, because in my head, face itching had to be a sign of an allergic reaction.
It’s also non-humorously funny to look back and realize I was already becoming paranoid of food allergies (and sensitivities) as the culprit to my skin woes.
I also recall having (and to some extent still have) the belief that because I possessed any abdominal fat, therein lied the reason I had eczema. It wasn’t yet possible to accept that I wasn’t infinitely healthy and majestic, that my body wasn’t perfect, that I had my own personal dis-ease I would have to reckon with that would change my whole game plan. It was easier to think that I was just eating too much and therefore making myself less than perfect.
It’s interesting because I can still so easily transport back into that mindset and remember how vital I felt, how alive, how healthy. I didn’t feel disappointment that my body had betrayed me yet.
Now don’t get me wrong, I can still get optimistic about my skin’s healing progress and feel I have come a huge way along the path of recovery. But my confidence of almost immortality that I had once before, is not there.
Part of that makes perfect sense. I have grown up and matured, and since realized essential concepts like that my body is no longer growing up, that I have to maintain health by eating right and moving and controlling stress or I will grow outwards in a horizontal direction. I get that. But there is also this, I think what I used to call “the Peter Pan effect” that I recognize is gone. It was akin to the moment I turned 12 and had to firmly accept the idea that I was never getting into Hogwarts, not because it was fictional, but because I had aged out of my chance. I adjusted to change of aging in asymmetry, non-smooth block jumps.
I think that’s the hard part of it all. You have to accept that time moves forward and one day you are on the other end of the growth curve, in what I now like to call the maturation phase, giving in to the adage of us ripening well like rare vintage wines. But it is hard to accept that where you were once full of epiphyseal (growth) plates, you now have the potential for osteoporosis; where hyaline cartilage once ran amok, we now see arthritis. I don’t know, I think sometimes the reality of aging, even if it is done amazingly, is still a bitter reminder that our lives are meaningful because they end, and so it’s important to accept the ride and always strive for better and better days, even if there are road bumps, like severe eczema in my 20s; here’s looking to flawless skin in my 30s!
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.
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.
A few weeks ago I finished a book called How Doctors Think by Jerome Groopman and oh boy do I have thoughts. First off I have to say that the book had its fair share of downer moments because it had a lot of cases of patients with cancer who struggled with doctors to find plans of care that extend their life just a bit more.
But other than that it was full of all kinds of information about different schools of thought that doctors employ to help their patients. Two specific ones it mentioned included the evidence-based and algorithm-based approaches.
With the evidence-based approach, the doctor relies on existing research, especially those that have a large amount of studies behind them. The issue with this approach is that doctors often default to using said heavily-backed solutions without inquiring or considering less numerously-backed ideas. This could become a problem, say if a new drug has tens of studies done on it, all sponsored and paid for by the company that produces the drug, while an alternative medicine or treatment may have great results but only a handful of studies supporting it, In that scenario, it’s almost more of a research field monopoly, rather that robust results that gives the drug the good reputation, causing the doctors to favorite it more. In relation to eczema, where these ideas can be applied is in understanding how to approach doctors in a way that doesn’t cause them to default to automatically prescribe topical steroids (the long standing, most heavily-researched atopic dermatitis prescription option) as the first line of action.
With the algorithm-style approach, the doctor can follow a flowchart style of logic that’s been proven relatively effective over time. Its basically like having a graph that has arrows from each option to a few subsequent options, like:
“Does the patient have X cluster of symptoms?
Yes = Prescribe drug A.
No = Run test 1.
Is test 1 positive?
Yes = Give drug B.
No = Run test 2.”
And so on, and so forth. The flaw with this approach is that it doesn’t allow the doctor to think outside the box, which Groopman argues can result in said doctor trying to fit a patient nicely into an existing “flowchart” result, even if there are some signs or symptoms that don’t quite match up with that diagnosis. This may be the case when someone has other co-morbidities too or when someone has common symptoms of two very different diseases (like this example of a woman who was using topical steroids and found out she had lymphoma). For this problem it can be useful to ask the doctor what are the best and worst case scenarios of diseases that fit the presentation of symptoms. Asking this can help a doctor think beyond their initial conclusion and more thoroughly work to rule-out other options.
Another significant point the author makes is that for doctors to really become better, they must remember their mistakes and use that vulnerability to inform their care. He gives examples of renowned doctors who literally have binderfuls of their mistakes that they reference to maintain humbleness and act as a forcing function to always push themselves to improve. This might be a more difficult conversation to have with your doctor as I imagine no doctor enjoys being asked, “so let’s talk about all the times you royally effed up with patients”.
One last subject the book addresses that I’ll bring up is the pressure doctors implicitly face when they accept any form of samples or gifts from big pharma companies. It’s not that all pharma-marketed medicines are bad, but that you want your doctors’ reasons for choosing a specific product to come from no other influence than that they believe it works and have seen that said products have good efficacy. This is why it can be hard to decide whether or not to use samples a doctor gives you as you don’t know that they really think it works or if they just happen to have them around from a sales pitch. A question to ask in this case might be “have you seen a lot of positive outcomes from use of X product?” Another way to foray into this territory with a doctor is to ask about long-term results, as well as what are any known side effects (this could apply to eczema-related products like topical steroids to non-steroidal creams or biologics or brand-name moisturizers). If something sounds too good to be true, it’s probably fairly new to the market and so the longevity of effects haven’t been tested. A further question to ask is if there are any cheaper off-brand equivalents because those usually only come out after something has been on the market for a while.
These are just a few of the points that the book made, that I’ve tried to connect back to how to talk with your dermatologist about eczema. There are more factors involved that could make the process more convoluted or impossible in some instances, but I do think these provide a light foundation to attempt to build a stronger relationship with the right doctor.
Speaking of the right doctor, I have an older post that goes more into making sure you feel comfortable and that you have a good rapport with your doctor, which was another huge point Groopman made in the book. He explained that a patient who is difficult to treat, simply by having complex issues that don’t respond to more common treatments, often ends up being resented by the doctors, and as a result gets worser care. The suggestions in the book for overcoming these kinds of doctor-patient relationship issues is to say something like, “I know my condition is difficult” or “I feel like we got off to the wrong start” to help try to make the doctor aware of their negative emotional bias.
On the flip side, a patient that the doctor likes too much may also get worse care if the doctor makes overly sympathetic emotion-based decisions like skipping tests to not inconvenience the patient or by avoiding procedures that may cause the patient pain, etc. To overcome this issue, it can be as simple as saying “please treat me like you would a patient you knew nothing about”, and hopefully that should provoke the doctor into making sure they’re as analytical and diagnostic as possible again.
I’d love to hear about any particular experiences you’ve had with your dermatologists in the comments, and whether or not you agree with my suggestions, and also from any doctors out there reading this.