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).
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.
When I haven’t had a real flare in a while (flare in my case depicted by aggressive heating up randomly due to pressure or any prolonged skin contact, or when my skin develops a hot red undertone color), its timely arrival always knocks me down a few notches. Sometimes I liken my eczema to being some kind of monster that continues to hunt me movie after movie sequel, or I hear its irritating voice cutting through a crowd. This most recent flare comes across like a socially unaware drunk, and I like to lighten my mood by pretending it would act like Sheldon from The Big Bang Theory:
Ugh. At any rate, I’m taking it day by day, and the good news is when I do fall asleep (and Fiona doesn’t wake me up) I can really sleep, thankfully. It’s strange, I don’t really remember what it’s like to naturally wake up anymore. In the immortal words of country singer Thomas Rhett, “ain’t it funny how life changes”.
But, when I am first in bed, sandwiched between the time before I can succumb to the depths of the dream world and the time before Fi wakes me up again, my head is filled with thoughts that I have to process.
It’s during this time that I find that I tend to blame myself for my flares. I’ll think back to things I ate and worriedly wonder if it was sunflower oil in the crackers causing me to develop a sensitivity to my moisturizers that have sunflower in them. Or I’ll berade myself because I had the fruit covered in dark chocolate. I’ll panic that I’m secretly allergic (but not anaphylaxically) to almonds and just never knew, or that it’s because I had too many calories and ate too many legumes and so I slugged my digestive system down and now I am paying the price. Or maybe I had a Polar Seltzer and who knows what those natural flavors are made of! Or I had a probiotic drink and maybe it was the wrong kind of probiotics. What if it was the coconut!? At any rate, the result is always the same, fearing food and feeling blue about myself.
This type of stress gets compounded by my clingy eczema, as it lingers over me constantly reminding me that there is a cause to each flare-up, so what was it this time? I also find that I scratch my hands a lot more at night from a combination of the heating up moments laying under the blankets along with the constant drying out (and literally nothing keeps the moisture in at this stage!).
What I’ve learned is that when I get super tired in the middle of the night, as I’m pawing away at my paws, I tend to have thoughts zoom around my head that make no sense but seem so logical in the moment. If I just scratch here then you know that assignment will get done. And random nonsensical thoughts like that. I honestly have no idea what I’m talking about when I wake up in the morning and looking at my picked scabs and scratch marks.
When I do have some skin healing downtime, I like to map out how I’ll treat myself later. I know it’s a pretty divisive option, but I love tattoos. I think there is something about knowing my skin gets all wrinkly and cracked and flaky that makes me not have those “well imagine how bad it will look when you are old and wrinkly” thoughts. I’m already wrinkly, and age has nothing to do with it. Me and this cat are basically identical:
At any rate, I like to find cleared spots and think about what kind of tattoo I would get there. Lately I’ve been thinking about lotuses. They have a lot of symbolism for women’s health which I really like. That and I really want to get a tattoo of a open book at some point. Generally I like dreaming this up a lot more than I actually execute action, but who knows what will happen after this flare passes.
Remember how I did a post yesterday about my skin care regime? Yeah ignore that. Much like how lives change, the way I take care of my skin is almost as fluid as my skin itself. Let me explain.
Yesterday I was talking about how I was using two products (Eczema Honey Co.’s Nut-Free Natural Healing Cream and Chuckling Goat’s Calm Down Kefir Lotion), and talked a little about them both. Well last night, Fi was fighting the sleep hard and I couldn’t get her down until around 11pm (after trying for 3 hours!), which meant that I didn’t get to catch up on the massive sleep deprivation from the night before. While I was trying to get her to calm down and sleep through various means, I was using the Chuckling Goat lotion on some dry areas (hands, feet, knees) to help work through some light itching. Finally, the little piglet stayed asleep when I put her down and I thankfully succumbed to my own exhaustion, only to be woken up around midnight by myself scratching the sh*t out of my hands, arms, and feet. It was so bad I could feel my skin starting to weep. Here’s a picture of the aftermath on my hand:
When I woke up enough to realize what I was doing, I took some Benadryl and waited for it to kick in and knock me out. But then I had to wake up at around 3am because Fi has been big into not sleeping through more than 4 hours at a time lately, which was rough (I don’t know if you’ve ever tried to cut your sleep short when taking Benadryl, but it is hard to mentally function afterwards).
Today I started the day off (once the Fi routine was completed) with another bleach bath to help level out my skin, followed by rinsing off using the Chuckling Goat Calm Down soap bar, and then using the Eczema Honey Co cream again. I am still very much enjoying it, in fact, it’s time for a mini review!
Eczema Honey Co is a company where the founders live with eczema themselves (always a plus because you know they are actually experiencing the condition they are treating). They currently have 4 products: their original cream, their nut-free (no almond oil) version, an oatmeal scrub, and cotton gloves, and the cool thing about their line is that they have a monthly subscription, which is lovely because when you have eczema all over your body, you know that you’ll need a lot of product. The one I am using is there nut-free cream and so far I love it. It’s only got a few ingredients (Organic Pure Honey, Grapeseed Oil, Organic Grated Beeswax, Organic Sunflower Oil, Colloidal Oatmeal, Pure Spring Water, and Optiphen), which makes it easier to understand what I’m putting on my body (aka looking up the studies on how specific ingredients affect skin). This is an important factor to consider because our skin is quite absorbent and things we put on it can end up in our hypodermis and/or our blood stream (and this is even more true for people with compromised skin like those of us with eczema). Of note: optiphen is a chemical made of Phenoxyethanol, Caprylyl Glycol, and Sorbic Acid, and the biggest concern with it seems to be that it can be a skin irritant according to EWG Skin Deep Cosmetics Database. My opinion on the product overall is that it seems to be the best thing I have tried up to now. I put it on after baths or showers and it tends to hold in the moisture best like I mentioned in my post yesterday, and it smells nice and seems to be helping reduce the major TSW signs: the redness, the dryness, etc. Jury’s still out as to whether it is helping with the itch (currently it seems my itching is worst 11pm-4am and nothing can fix that minus taking Benadryl to knock me out). All in all I think for now, especially given that I have only used it for a few days now, this is the product I am going to stick with and see where it takes me and my skin. The only less than positive comment I have is that it is a bit sticky, but it’s mostly made of honey, so that’s expected. All in all I’m giving it two thumbs up so far.
Speaking of skin (which I almost always am), I am currently reading The Little Book of Skin Care: Korean Beauty Secrets for Healthy, Glowing Skin by Charlotte Cho. So far I’m enjoying it immensely, as it goes into detail about how the Korean skincare regiment works in a nutshell, as well as how the mentality of it differs (Cho says that Koreans enjoy their skin care and don’t think of it as a chore). I am trying to think about how those of us living with eczema/TSW could learn to love our skincare regimes. It feels like such a foreign concept, but I can see how it would be an immensely helpful part of healing. So, I am thinking about how to apply what I’m reading in the book to myself and if it works, subsequently to the eczema/TSW community. Keep your eyes posted for that in a bit!
I also wondered if there are estheticians that specialize in eczema/TSW, because that would be awesome. Another idea I had was that if in some world I could learn Korean, it would be awesome to go to South Korea (with my sister who has been studying Korean for years) and experience their skin care ways for myself. But that’s a pipe dream.
On a complete and utter tangent, all I dream about lately is eating That’s It Bites, the blueberry ones in particular. But actually. I go to sleep wanting them, I wake up wanting them, and then when I am sitting around during the day, especially if I get a little bit hungry, I crave them so badly. I think I’ve latched onto them because:
That’s It bars are so good
blueberries are some of my favorite berries
the chocolate truffle version is delicious, particularly the blueberry one
they don’t have any other ingredients in them besides blueberries, apples, and dark chocolate (cocoa, cane sugar and cocoa butter), and I’m not eating sweets with ingredients I can’t track
So basically if you are ever feeling like you want to send me something nice… send me those – insert winking face here – !
Anyway, in regards to the title of today’s post, what I meant by taking a new direction is that I am trying to figure out what my focus, both hobby and career-wise, will be. I am accepting that my skin is going to be the limiting factor for a while to come and in that interim I am trying to figure out what I can do, not just in the meantime, but potentially forever. I want to be able to start to commit to things again and know that I’ll still be able to do them even with the worst of flares. I know I’ve dabbled with writing for a while, but now I am thinking of taking it seriously (Glob help me!). If you know of any opportunities, let me know (this is my desperate reach out to the universe)!
Tangential parting thoughts: Did anyome know the reference I made with the post’s title? I credit my dad for why things like that are still stuck in my head today.
I read somewhere that hives and sweating were signs of recovering from topical steroid withdrawal. As I am finding myself developing hives on occasion and able to sweat more normally again, I sorely hope that that is the case and that this particular journey with eczema will soon be over.
But what does that even mean anymore? So much of my life has now been formed by eczema and going through topical steroid withdrawal that I can’t remember life without them as constant companions.
I dropped out of my clinical graduate program to avoid physical contact and other triggers to my skin, and instead went more towards the research-based side of academia, which derailed my initial streamlined plans.
I have seen all hours of the night as my skin raged: the itches of eczema and the topical steroid withdrawal heat flares and weeping skin. As a result I have learned to be flexible and take a good day at face value, to reflect.
I reconnected with and got married to a man more understanding about my skin and its flares than I thought capable which led to confidence about speaking up about my condition. And then had our magnificent little baby, which subsequently created an even more difficult paradigm for myself if the ambition was to return to the initial 9-5 job plans but caused me to find new passion (the postpartum period, library advocacy) and reignite old ones (writing, French, storytelling) which have started and continue to turn into new opportunities.
I poured hours and hours into self care and forgiveness and lifestyle alteration to be able to manage my condition and as a result became a calmer, happier person, though I also amassed a collection of products (and a product graveyard in my cabinets) and wasted money.
I developed a deep distrust for dermatologists and their lack of advice on the role of sustainable practices (such as nutrition/diet) and their quick fix mentalities. All I crave are conversations towards investigating correlations, and talking shop about safest management practices for the longterm.
I have learned the power of an anecdote, and how many kindhearted souls have advice to spare, showing the breadth of ways this condition is handled, but also that people care and want to help if they can. There still exists community.
Honestly, I’m not even sure what my identity would be if I am no longer plagued by this disease; it’s so much a part of me now it’s almost like having a second shadow lingering from constantly well-placed lighting.
And as a result I’ve developed into a completely different person these last 5 years, almost unrecognizable in demeanor and attitude from that healthy-skinned 22-year old.
I’ve had to learn to do things all over like figuring out how to exercise in ways that don’t trigger a flare, or how to manage symptoms when they are triggered by a social encounter, stress, or the weather. How to be okay with a body that is less than ideal and not as healthy as it was in the past.
Though I’ve had to give up a lot, I’ve grown from it and become a stronger, more introspective person who has had to work less hard to find others’ hidden untold stories. I’ve learned to be brave in my exposure, to hold my head up even when suffering, but also to acknowledge my own limits. I’ve learned to ask for help, and to accept it.
Who I am today is inexplicably linked to my experiences and in the last five years; I have been stained by this disease, this condition that requires so much sacrifice and change, but also so much empathy and strength.
As I stand back and reflect, I note that a quarter of my quarter of life has been influenced by eczema/TSW. A huge intractable part of me has worked to understand and accept this reality, and I will continue to do so, and see what happens next: what else I’ll learn and how else I’ll change.
Itch-induced insomnia has been a big irritant in my life lately. Once awake, the sweet whispers of my deeply creative but poorly timed imagination spring into gear and I’m left day-dreaming and pondering through all the remaining hours of the night.
Tonight, a mini torrential downpour has started after 4am, and I am intrigued by how amiable my feelings are towards the storm this day. Normally a grey, cold (for summer), rainy day is grounds for temporary depression as I pine all day longing for the sweet golden rays of the sun, and its many bright possibilities.
But today, I welcome the rain. It comes on a day when I already plan to stay in, with warm (virgin) hot toddies, familiar movies, nourishing home food, and the best cuddlemates I could ask for beside me.
Today, the sounds of the rain drumming on the roof by my window are a delighting orchestral ensemble performing a liquidity symphony to my receptively excited ears.
Today, the inconsistent downpour reminds me of the magic of rain, the primal feeling of newness and cleanness, the rain washing away all the dirt and build-up of previous time to which I mirror by washing away all excessive build-up of thoughts and itchy urges.
Today, I embrace the celestial water overflow as the omnipresent benefactrice to my althaea offinialis, and let the staccato melody lure me back to sleep and into healing.
Today’s post is all about trying to convey what life with eczema is like for me. The first thing I need to stress is that my condition was not always this severe. I can remember a “before”, as my condition didn’t start affecting my skin globally until I was 21 or 22.
So how has eczema affected me?
insomnia – Some nights I was unable to sleep until 6am. More recently off and on I have difficulty sleeping from midnight to about 6am.
food paranoia – Given that I have legitimate food allergies to peanuts, pistachios and cashews, I know how to deal with food allergies that cause anaphylaxis. What I don’t know how to deal with is the thought that some common food might have developed into being the cause for the severity of my skin issues. Also sometimes I’ll eat something that is usually fine for consumption, and I’ll break out in hives in my mouth inexplicably and the next time I consume said food, it won’t happen.
many different diets – I have tried the gambit of elimination diets, auto-immune diets, vegetarianism, paleo diets, sugar-free diets, low-carb diets, detox diets, etc).
food-related social repercussion – You have no idea how frustrating it is to have people think I am “just being picky” when I am avoiding certain foods or diets. It’s usually when I’m avoiding gluten, dairy, or soy or other common American-diet staples. What I don’t understand is why people think I enjoy avoiding these foods… do they not know my undying love for pizza and ice cream?
intimacy issues – picture not being able to cuddle on the couch while watching a scary movie without covering myself in a blanket to make sure my skin doesn’t touch my husbands. Long drawn out hugs? Nope.
skin-to-skin with baby issues – I have adapted to the lifestyle of needing to put a barrier between me and my baby’s skin. When I feed her, I throw a cloth on or wear long sleeves before I put her head on my arms. When I have her in a carrier, I try to put a layer between her face and my chest, or else I know I’ll have to take her out earlier as my chest will start turning red, flushing, and itching.
exercise limitations – Up until my junior year of college I was doing many different sports and activities including soccer, track and field, long runs on my own, ultimate frisbee, generically running around like an idiot, etc. Post-eczema life, unless I can get a flare to calm down for months, cardio is a nightmare. Hell, at this point in time, just going for a long walk in the summer induces itching everywhere that takes at least 10 minutes in an air-conditioned building to relieve.
summer nightmare – See what I mentioned about walking above and now just add that to general life in the summer. I do well if I don’t move, and if I avoid direct sunlight. Though I also need sunlight for vitamin D (and in my previous life I loved the sun) so I’ll pop outside for a few minutes to bask in the sun’s warm embrace and then I’ll overheat and have to come inside. At least the itching only starts if I sweat.
pain (cracked skin) – During certain stages of a flare I dry out (especially at night or after washing my hands or other random times) and my skin will crack. The worst areas are my hands (which will fissure all over) and my ears, as well as sometimes under my eyes.
obsession – I spend so much time thinking about my skin and worrying over if I am doing something to make it worse, or not doing enough. It gets exhausting really.
career switching – I dropped out of my physical therapy doctorate program because I just couldn’t deal with my skin. I wasn’t sleeping, I was uncomfortable sitting (more on that in a bit), and I couldn’t stand being in an air-conditioned room (see below), or being touched or coming in contact with another’s skin, which made it incredibly difficult to practice the hands on aspects of PT. I am now still in a stage of making my own career, which while exciting, is stressful when I have to talk about it because it’s not a clear cut “oh, yeah, I do X” anymore.
fear of infections – As my skin barrier is compromised so often, the risk of infections, primarily Staph, is high. I spend a lot of time wondering if I am infected and worrying when I catch a cold or something that I have contracted Staph (again).
hand washing (pain/itching) – Imagine how many times you have to wash your hands or use hand sani when you are a PT student working in a clinic. Doing dishes is irritating enough. Sometimes even just taking a shower will irritate my skin.
cleaning frequency – Given that I shed skin faster than the average human, I spend a lot of time cleaning to try to not live in my own skin dust filth.
social situation aversion – When I am flaring, I have no desire to go out, not only because I worry about the stares I get for physical appearances, but also because it takes so much energy to deal with varying temperatures, varying foods, varying stressors, usually a lot of sitting, the inability to play/dance without itching, etc.
general discomfort (pain, itch, smell) – Eczema this severe is uncomfortable. The obvious is that it itches, and not like a “I have a random little itch” but more on the level of if a swam of mosquitoes bite you all over your body but instead of having angry welt-y bite marks externally, they are all inside your body and not visible to anyone. The pain comes from the cracking I mentioned above, as well as the pain of the self-inflicted wounds from scratching too hard. When I have a bad flare, I develop this scent that I call the burning rubber skin that I loathe.
depression and anxiety – It’s no surprise that aggressive and long lasting flares take an emotional toll. As I spend time in pain, itching, paranoid about foods I eat, avoiding people, and unable to exercise and play as I normally would, sometimes my moods take a nose dive.
money spent – From skin care lotions and moisturizers, general soaps, bath products (bleach, epsom salt, apple cider vinegar), natural house cleaning products, dry brushes, the rebounder, to the doctors’ visits, etc, this condition isn’t cheap.
doctor visits (dermatologists, endocrinologists, neurologists) – There is something very frustrating about seeing many doctors and still getting no relief. I have moved a few times in the last past 4 years and as a result have an even larger number of individual doctor visits under my belt. The general consensus? I am fine (as in no underlying crazy cause of my skin issues like cancer), but I have eczema. Oh and have I tried using steroids creams? -.-
hormone imbalances – Since I spent so much time inflamed, I usually have a highly elevated level of immune stuff, like my white blood cell count. When my skin first started going haywire, I also have high cortisol level, which made doctors think I had a hormonal imbalance and first order an MRI of my brain.
forever fielding questions – “Have you tried X??” “What’s wrong with your skin?” “Do you use lotion?”
excoriation disorder (dermatillomania) – Due to very often having flaky skin, I have developed a picking disorder where I spend inordinate amounts of time trying to remove dead skin from my body. It’s become partially therapeutic and partially me trying to exert control over my uncontrollable presentation.
scratching OCD – I scratch all the time. In my sleep, when I’m stressed, when I’m relaxing. I don’t even notice I’m doing it sometimes.
scarring – Go figure from all that scratching I’d have scars.
ring wearing/jewelry/piercings – I no longer wear my wedding band on my left hand because the ring finger on that side is usually swollen. I wear it on my right now. I also had to take out my belly button piercing, my nose piercing, and all ear piercings except tragus one because the skin started itching so badly around them all.
hot inflamed skin with cold chills/shivering – One of the worst stages of a flare is when my skin is constantly wet and weeping and heated, but I’m losing so much heat that I am internal freezing and will shiver uncontrollably.
winter is bad – It’s hard enough to regulate my body temperature without the weather outside being frigid.
sensitivity to pressure contact (sitting/laying down) – This made PT school very trying. Hell, going to a doctors office and laying on the table, or sitting on a chair for too long made my skin feel terrible and heat up and start itching. This is even through wearing long sleeves and pants.
nervousness = flares – Some nervousness is good for keeping our brains alert. Unfortunately, any little bit of social nervousness (like before a practical or talking to new people) would cause me to start to flare and itch.
wrinkly, swollen skin – Still not sure why this happens (maybe it’s a product of topical steroid withdrawal) but the skin around my joints especially, on the extensor side, starts to look like that of an elephant.
discoloration – From redness to drying out gray/white, I am a veritable human mood ring.
And since people love me and will forever want to help, here is a list of what I have already tried:
topical steroids (for a good 20 years as this was the main accepted solution to eczema for decades)
topical medicines that are not steroids (Elidel/protopic, etc)
lotions/moisturizers (cetaphil, cera ve, aquaphor, dove eczema line, exederm, burt’s bees, obscurely-named-other-ones, etc)
going moisturizer free (actually does help with the red/weeping stage)
acupuncture (including herbs, cupping, and massage)
phototherapy (clinically done in light boxes, and just being in the sun)
sleep aid pills
yoga, meditation, and deep breathing
coconut and sunflower oil
bleach, epsom, and apple cider vinegar baths
collagen powder (edible)
Update: I have not tried any biologics because I have been pregnant and am now nursing.
Despite all the shit that comes with eczema, there have been some silver linings in my experience including:
Having to deal with eczema year round has made me live much more seasonally. In the warmer months I try to take advantage of being able to walk outside for hours and garden to get vitamin D and get exposed to bacteria in the soil (and as stress relievers). In the colder months I turn to herbal teas and nourishing soups, and bundle up well to go on walks to get fresh air. I pay a lot more attention to what can grow when, and try to eat accordingly (like lighter foods in the summertime).
Having dealt with the difficulties of eczema for so long, in juxtaposition pregnancy wasn’t half bad (though to be fair my belly was small and I didn’t have morning sickness… but discomfort with sleeping? Aversions to certain foods? Tired randomly? Feeling generally uncomfortable? Yep, I was used to that all already).
In effort to control my flares, I am constantly open to trying new things (though my wallet isn’t!).
When I first came up to visit Jake, before we were dating, we had an honest conversation about eczema and I told him how bad it gets for me, and he still wanted to be with me. To this day, I’ve never had insecurity about my skin around him.
I have learned to really appreciate the good days. As a result, I’m generally even happier of a person.