I’m combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂
I’ve been reflecting on the various triggers to my eczema during this neverending but constantly changing topical steroid withdrawal and at 2am this morning I came to a realization. My skin tends to itch like crazy when I’m exposed to something wet in short bursts. This includes actions like washing my hands, dipping my feet in a tub to test the temperature, applying lotions to dry skin, etc.
This realization made me backtrack and first want to know what is the stimuli the body responds to when it’s wetted. We have receptors for temperature (thermoreceptors) and chemicals (chemoreceptors), and even some for painful exposure broadly (nociceptors). We also have cutaneous receptors that can detect pressure, touch, stretch, and vibrations, but still none of those seemed intuitive for how wetness would be recognized. Obviously it’s got a temperature component but that wouldn’t work alone. I did a quick google search and came across this article, which explained that wetness is registered a mix of cold temperature, pressure, and texture reception in tandem with learned experiences to create what was called “perceptual illusion”. Note, I have cited a secondary source above, not the primary study. The study itself I couldn’t access fully, but it is here.
I thought about the information I read and concluded that it didn’t help to explain why my eczema-afflicted skin reacts so aggressively to short duration bursts of wetness. Perhaps it has something to do with the over-sensitization nature of eczema. Maybe if the A-nerve afferents are just more reactive in general, inconsistent exposure (like multiple drops of water hitting my skin) would cause the A-nerve afferents to send tactile/temperature information repeatedly. Then as the over-sensitization makes me register many sensations as an itch, it would just create more itching. Maybe?
I’m combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂 This entry was written in April 2019.
It has been 6 years (more or less) that I have been dealing with what seems like severe skin issues. When this all started in 2013, no one knew what was happening to me, and various assumptions were made. My mom strongly believed the cause to be that the off-campus housing I was living in was too dirty. My dermatologists thought it was from improper skin care. My doctor thought it was from a staph infection. My specialist thought my symptoms had a hormonal component and the likely cause was my birth control pills or the pituitary adenoma they found on an MRI of my brain. I thought it was from topical steroid usage.
But whatever the cause, the medical treatment has been about the same no matter who I saw (and see). I’m advised to moisturize more with different moisturizers and then prescribed rounds of antibiotics and prescription on prescription of topical steroids (and often oral steroids too if I’m looking particularly bad). The result has also been the same- some clearing up of the skin, followed by a precipitous dive into new flares as I taper off the steroids. It’s almost like my skin is addicted to steroids. What I mean by that is that because I have been applying exogenous (not made from my body) steroids for so long, my skin has adapted. So when I stop using the steroids (or at this point, when I start decreasing the amount as recommended) my skin, having slowed its natural cortisol production in response, suddenly can’t remember how to make enough cortisol. As the blood all rushes back to the skin, with it comes all the inflammation that the topical steroids had kept at bay. (Oh and as an aside, the reason people can’t stay on topical steroids forever is because it thins out your skin over time and can also make you very sensitive to sunlight).
With addictions generally, I’ve heard you can take one of two approaches: drop it cold turkey or reduce it measurably over time. Both types of approaches have been attempted with my skin. The research behind tapering when your skin is already addicted has been changing a lot and so every doctor has a slightly different plan about how to do it. Unfortunately, every plan results with me having worser flares from the moment I start the taper. It is for that reason that I usually opt for the cold turkey approach.
The problem with cold turkey is that I haven’t lasted more than 2 years. At some point I’ll eventually give in and go to a new dermatologist and they will scare me into using steroids and antibiotics again. One told me my organs were also inflamed because my skin was (this was said off-handedly when I mentioned my fear of topical steroid withdrawal. No tests were done to confirm such a statement). Another said my choices were steroids or cyclosporine (an immune-suppressant given to patients getting organ transplants so their bodies don’t reject the new organ. To be on them requires kidney function monitoring, and your ability to fight off things like the common cold is reduced). Another said that skin regenerates by every 3 weeks so there was no way my skin would still have issues with tapering off. And yet another said I should just use topical steroids as needed just on my rougher spots, but then gave no general instructions about how long “as needed” is, if the skin keeps flaring.
This isn’t a blame game towards dermatology (anymore: that was an older stage of grieving). At this point I am more interested in the cultural acceptance for myself and by others of this state of being chronically ill. I’ll be honest, it’s incredibly difficult to do for myself. I constantly think about how life will be if and when I heal, what things I’ll be able to pick back up, what things I’ll be able to try. But deep down I have to accept I might not heal. Lately, I’ve been banking on biologics (Dupixent) to save the day and I just keep being like “okay I’m breastfeeding now but once we’re done, so long as I dont plan to have another child, I can go on these groundbreaking but experimental drugs.” I have to think about life decisions in that way because no one knows the effects of these medications on fertility or pregnancy, and if I use them I am not willing to take the risk. Harder still is that their efficacy isn’t even guaranteed!
As a result, I’m always forced to think ahead. So much of my experience as a first time mother has already been influenced by my condition. It’s not just dry skin. My body reacts like it’s allergic to everything, even to holding my baby’s head on my bare arms when breastfeeding. I always wear loose flannel over myself to not have that skin contact. I can’t give my baby baths as easily because my hands freak out from that kind of water exposure (washing my hands in general makes my hands itch like crazy and sometimes break into hives). I can’t do crazy sweat-inducing heat-generating workouts as easily without needing breaks to let my skin cool and dry off so I don’t scratch myself to death. This also means carrying my baby strapped to my body on a warm day eventually makes my stomach flare up. I am becoming increasing sensitive to new allergens, like developing allergies even to my childhood dog and a lot of my friends’ houses.
This condition also impacts my ability to sleep. Sometimes I’m kept up at night by my baby, but often times it’s my condition that does it; my skin going through thermoregulating issues or being triggered by friction, sweat, air temperature deviance, my husband’s body heat, stress, etc all irritating my body so I am either scratching or my skin is heating up and weeping, or cracking as it dries out. It’s a neverending battle to not fear going to bed though I know I need the sleep, because I get so nervous about how uncomfortable the night will be.
And then all the while that I’m slowly learning to accept my own condition as a state of being, I have to figure out how to validate myself to the world. The most common attitude I receive from others is that I am just negligent in using moisturizers, which results in a lot of product recommendations from coconut oil to castor oil, Eucerin to Aquaphor. The challenge is getting people to realize that it’s not just a dry skin issue. I often have sporadic allergic reactions to products (no matter how natural) because it’s an autoimmune issue. Over the past few months I have reacted to coconut oil, and then vaseline, and then vitamin E oil. Now all three are fine to use.
This condition also impacts what I can eat. I once had a date (the fruit), and immediately broke out hives all over my lips. This happens with foods I previously could and will again be able to eat. The reason is because my issue is internal. The skin is just an unfortunate symptom. And yes sure, if I can consistently figure out how to keep my skin closed (no weeping or open wounds) maybe my other symptoms will slow, but my skin didn’t flare up one day in 2013 in a vacuum; something else triggered it.
The next challenge I face is convincing people that this is more than skin deep. I have had people tell me that eczema (the blanket term for having rashes like mine anywhere on your body) is not an autoimmune disorder. One, it definitely is, and two, when you get to my severity level (aka chronic and where the whole body is affected) you have to recognize something else is at play. My eosinophil levels (a type of white blood cell) are often off the charts. I’m talking 6000 units when normal is 60. And again my inner mouth and throat aren’t affected by eczema yet they break out in hives fairly randomly. My digestion also can get messed up at a drop of a hat and I often know I’m in a healing phase when I have bowel movements again. Not to mention joint swelling and swollen lymph nodes even in regions of my body where the skin is intact. My body’s immune system is definitely overactive.
The next issue comes from dermatologists. I honestly don’t know why I keep expecting a different plan of care, as their profession literally meaning the study of skin, but I’m always bummed when they come at me from the approach of only how to fix my skin. Like I said, the problem is my skin isn’t the cause. So if they just give me meds for my skin, I finish the medications and the symptoms return because the cause hasn’t been found and treated.
All this is to say that finding a way to accept my life as it has become, and getting others to realize what it’s like has been difficult. I’m naturally a very anxious person, and the rapid onset of this condition followed by years of being a “medical mystery” and now basically a non-compliant patient (at least towards any derm that recommends steroids yet again without having new scientific evidence proving efficacy in case studies similar to mine) have made me quite wary. I don’t have good faith that people will understand what it’s like or why I am constantly reinventing my future. Why I constantly change my diet. Why I adopt these “hippie” approaches to skin care like refusing topical steroids or going moisturizer-free during wet flares. I’m not trying to be difficult or ignore medical advice. I’m working to figure out this body I’m in as it is, and treating it gently as I re-meet it and get to know it, accepting that yes, I may now always be chronically ill even though I still remember a time when that wasn’t the case. And yeah maybe there will be a cure and/or I will heal one day, but until that time I have to meet myself where I’m at now.
I’m combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂
As you may or may not know about me, my goal in life (career-wise at least) is to create a company that cultivates support for women with chronic illnesses as they embark on becoming mothers. One of my dreams is that services provided will help to make up for the loss of midwifery-type support that towns and cities used to have, and combat the decrease of share “wise woman” spaces, but specifically in the context of helping women who have varying autoimmune or other chronic disorders.
In my dream scenario, this company I create is inspired by community and healthy social growth, devoted to bringing together all people, not just those who can pay, or who are healthy.
If I ever delved into having a physical space for the company (as opposed to being a traveling owner), the space would be free to visit (when not going to a scheduled appointment), and would have lots of nooks and tables and chairs for people to enjoy the space, and some days would have events that would have an entrance fee but it would be reasonable, and would include a free meal that my husband would make along with other perks like meet-the-community-support-team, free lectures/discussions, etc. We’d work with local hotels, bed and breakfasts, and other places that rent out rooms to make sure there were plenty of accommodations ready too, which would help bring money back into the town.
Anyway, I could go on for days, but as a result of my lofty goal, I constantly have my eyes peeled for events or opportunities that bring about that community feel, especially in women’s health. 4th Trimester Arizona is one of those awesome events I learned of after it occurred. It seemed like the perfect fusion of mixing the community members (moms, dads, grandparents, etc) with local businesses, and with health/health care professionals, allowing for support and engagement for new moms and their families. The event included workshops, panels, free wellness services, a dad track, bonding activities, and more, all with the intent of strengthening community.
Going through a few of the speakers of 4th Trimester Arizona led me to Matrescence 4th Trimester Planning and Support, an organization started by Caitlin Green Cheney and Elizabeth Wood. They hold workshops that include how to prepare for the 4th trimester, including how to make a support system. Here is a Q&A session they did that tells a little more about their company and their backgrounds/how they got to where there are. They also encouraged me, because although they are more of a service you pay for, their intent is still to help provide education in tandem with support. I am finding that one thing most humans seem to crave in this day is more support in their endeavors; the world has gotten so big and diverse that finding a space where you feel a part of is so important. Hence my whole reason for wanting to become a postpartum advisor for women that are usually the most isolated, those who are chronically ill.
I’m combining all my other blogs’ content to this site. Please bear with me as I post older content. 🙂
Way back a few months, Fi and I visited my parents, and as a result she got her fill of dog exposure. Studies are still looking into the impact of early dog exposure (e.g. the first year of a baby’s life) on the child’s risk of asthma, allergies, and eczema later in life, and preliminary data seems to suggest that dogs have a positive effect in decreasing the risk of all three.
One study even found a higher correlation of eczema reduction for black children as opposed to white children from dog exposure, which could be useful as black people statistically have a higher risk for eczema (especially women).
These kinds of studies highlight the need for analysis of subgroups (e.g. race, gender, type of birth) to really understand who is being affected specifically. However, subgrouping is only useful so long as the studies are done through non-biased non-reductionist lenses. If accomplished, such specificity would allow for more applicable research to come out that could help promote better health, wellness, and medical decisions.
Which reminds me, I also listened to a webinar from the Black Mamas Matter Alliance. It covered a lot of material, but there was one particular point that stuck out to me (besides the need for a lot of policy reform across the country). It was the need for doulas, particularly those who live in the communities they serve (called community-based doulas).
Doulas act as support people for mothers, providing nonjudgmental (and non-medical) advice to moms from pregnancy to postpartum, making sure moms understand their rights and options. A doula from one’s own community would invaluable as they would understand the dynamics behind the community, as well as having firsthand experience with how the medical/clinical facilities are.
The webinar also talked about the need for insurance coverage for doulas (especially under Medicare), so that more mothers can afford them. I couldn’t agree more, especially as doulas correlate with better outcomes and statistics for the mothers overall.
The webinar is up on the BMMA site if you want to listen to it.
And lastly, I also read a book by a black midwife called Listen to Me Good, which was a book about a less well known figure in women’s history named Margaret Charles Smith. She was a midwife in Alabama who worked from the 40s to the 80s.
She never thought she’d become a lay midwife, as the hours were terrible and the pay even worse, especially for a black woman in the south. She learned traditions of birth and postpartum care through her grandmother and other “wise women”, and then later got standardized training through the nearest hospital, which allowed her to assist more women in a systemically recognized and medically approved fashion. She still continued to serve women as best she could without putting her neck on the line (she also helped deliver white women’s babies, which was a contentious point at the time).
The book also reflects on the various struggles black women faced in trying to work as midwives in Alabama, first due to explicit racism, but in later years, also due to systemic racism and prejudice through the worlds of healthcare and medicine, as doctors sought to get rid of lay midwifery (and devalued nurse-midwifery too in some areas). Many women, like Miss Smith, continued to try to care for women regardless, as they were the only option for hundreds of miles, and because white doctors were generally not interested in making the trip to aid poor black women give birth.
It really puts into perspective that even today, black women in America are still three to four times more likely to die during childbirth (or the first week immediately after) than white women. Food for thought.
One thing that could help bridge this increasing gap is better sensitivity training and education for medical practitioners. I was curious about different traditional practices and beliefs around postpartum care which led me to some interesting studies. One such study covered a few Central American countries and their beliefs around both the perinatal and postpartum periods.
I do think it’s important to know of the different roots behind postpartum treatments to help understand why a family may act/react the way they do to particular medical practices in western birth facilities (like hospitals). This is the way, in my opinion, to create a culture of care that uses a mom’s background/culture along with the medical evidence based practice to put the best interests of moms first, rather than of healthcare premiums.
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!