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.
What’s got both ridges and valleys
which tell time,
Can withstand the weight of mankind
but not for long,
Can be used for love or hate
and to experience the world,
Has languages of its own
but can also be quite mindless
Can lead to one’s destruction
or to one’s survival
Can be the epitome of cleanliness
or the harbinger of disease
Can create masterpieces
or deal with mistakes,
That most everyone has?
It’s my favorite time of year and I just received my Chuckling Goat package (but more on that in a bit).
A few months back I wrote a post about the skin biome and how I was excited by the small movement of companies creating products geared towards helping it. Since then there have been developments about different companies creating products to help either work with the natural skin biome or to help reintroduce micro-diversity to create an appropriate balance for healthy skin.
The company has become skin microbiome-focused in a multitude of ways, including offering use of their JLINX incubator under the JLABS. S-Biomedic has joined JLINX and is working to create products that remove the bad bacteria and replace it with good ones to balance out the diversity of the skin back to a healthy level. This idea of balance is becoming more and more accepted as it is found that overuse of antibiotics is causing more harm than good for conditions like eczema. Studies are showing that balanced diversity is what we need for our skin biome, rather than sterility (noting that antibiotics still have their place, including when surgery or infection is involved). Microbiome transplants are now no longer a thing of the future but are instead potentially the next big medical treatment protocol!
More recently, I read a book called The Good Skin Solution by Shann Nix Jones, that talked about the gut and skin microbiome and Jones’ personal experience as to how she came to develop a treatment to help manage her young son’s eczema. The goal was to help increase the diversity of both microbiome using the probiotics in kefir made from their goats’ milk. When it was a success with their son, her and her husband decided to sell their products and hence the Chuckling Goat business was born.
Jones reintroduced me the theory that you need to fix your gut microbiome to have any really lasting effect on your skin, but she added the idea that it’s best to treat both at the same time, (hence her her program that includes probiotics for both the skin and the gut). Needless to say I was intrigued so I looked into her products and went on to order some (but unfortunately I can’t get the kefir drinks because I live in the states and they don’t ship that outside of the UK).
Today the soaps and lotions arrived and I am beyond excited to receive them (happy as a clam… or a ceramic jack-o-lantern!). See my spoils below:
I’ll have to figure out what to do to increase my gut flora diversity in lieu of kefir, as I was advised to avoid dairy while breastfeeding to see if that helped with Fi’s digestive woes. I’m not sure if goat milk would be okay since it is supposed to have less allergenic components than milk. I may just wait until Fi is done breastfeeding.
I swear I have a post I’ve been working on that is (relatively) thought out and not like this one where I am just typing as I think things. But alas, I cannot finish anything lately and so that well-constructed post will be another day or two. I still spend many of my days in a haze, and not because of the baby, as you might have thought. Oh no, it’s because my skin has decided to develop a fresh subcutaneous sheen of itchiness. Barely perceptible to the naked eye (my skin looks pretty good lately, minus scabs and scars), it plagues me especially when I lay down for the night. Why am I flaring? I have no idea, especially since the skin is looking better. Maybe it’s the change in weather. Or perhaps it’s something I ate (which is always my fear). Who knows.
When not in a haze, I spend a lot of time scouring my kitchen for things to eat. As prescribed by the pediatricians I’ve been taking Fi to, I am no longer eating soy, dairy, wheat, or egg products in my food. Though I am no stranger to partial elimination diets or other dietary changes, I don’t think I’ve ever avoided egg yet while among the others. So now you’ll often find me longingly looking at a pasta box, and eyeing the forbidden cheese as a hobby. That takes up a bit more of my time.
Then (and eventually I’ll have to do a better post about this) there is the time spend dealing with my excoriation disorder (also known as dermatillomania or skin picking). I have always had a weird tendency to scratch at scabs and pop pimples (I know, gross) when I was young, but with the onset of global eczema and the constant scratching for months on end, I definitely fell firmly into this disorder. Sometimes I can be less destructive, or channel the destruction into societal acceptable forms (like using tweezers to remove leg hair), but other times I spend collectively hours picking off dead skin and harassing healing skin. I don’t have the common concurrent comorbidities of depression or trichotillomania (hair pulling) or OCD, though I have noticed that since the age of my worser flares, I do tend to be more obsessive with time wasting things (like trying to get my graduate notes perfect, which entailed me rewriting them over and over in different notebooks, never actually managing to finish one before I had a new idea of a better system to help me study more efficiently). Anyway, so to combat that I try to keep my nails really short, and keep my hands clean and busy, whether that’s typing blog posts, reading, or wildly gesturing to my baby to make her smile (still waiting on that first laugh), I try to condition myself to not focus on picking.
Then a large portion of every day I spend worrying that I should be working, that finding/creating these part time opportunities while staying home with Fi is not enough and that I need something full time. I don’t know why I’m so insecure about this, the people in my life have been nothing but supportive. Perhaps it’s from the occasional comment, or the sporadic question about when I’m going back to work, am I back at work, do I enjoy being back at work. Or my favorite one to answer, “what do you do?”. The sassy bit of me wants to retort, “well I exist, so eat, breathe, sleep, and shit are on the list. Then I like to round myself out by engaging in basic hygiene, getting exercise, and enjoying sunshine”. Obviously, I keep these kinds of comments in my head.
Even when I was little I was less interested in a career pathway than in making adventures and experiences into stories ( well, except for a brief stint where I wanted to be a dentist because I thought teeth were interesting and I wanted to be the gentle-handed one that removed people’s fear of getting dental work done). I wanted to be a writer because I loved stories and just wanted to create my own. I was obsessed with reading multiple books even at social events because I loved finding out what happened next. And if I’m being honest I still want to be a writer today, just a different kind. Then after that I decided I wanted to be a naturalist… only at the time I thought naturalist entailed tying a cloth around a stick and adventuring into the woods to forage for edibles. I do think that was just a storyteller’s bend on biology (which I then went on to study in college… hmm). Momentary break
What was this post about? I actually had to quickly scroll up to see the title I wrote earlier. In my defense, I walked away from the computer for a while to change Fi’s diaper and make more food, then to feed Fi again. Oh right, distractions. That’s apt. I guess I should have said distractions from what. I suppose distractions away from making a clearer post. Unfortunately that’s the nature of the game I’m playing lately. I have all these ideas for posts, many of which I’m working on, but the more research they require or the more motivation for words I need to work towards, the longer it takes to actually complete.
Oh, and another distraction is the book thing. I have a book problem. I tend to get 10+ books at a time from the library and then pigheadedly want to finish them all before their due dates, despite not having unlimited time to read. So instead I end up binging books in the middle of the night which doesn’t help with the insomnia. And then I’m more tired the next day. Whoops.
Anyway so this winter I am trying to distract myself from bad habits. This winter I’m am going to try extremely hard to keep my skin going in the right direction: healing. Usually once the cool air touches down and I inevitably become more sedentary, my skin becomes crap. So now I am trying to mitigate that by embracing winter’s cold touch (and trying a rotation of new products for different flare periods) and making sure I exercise more. And to combat the winter body blues (also in lieu of doing a drinking game with a TV series), this past weekend my husband and I made a fitness game. We tally up various events in a show which then equate to an exercise to do. After each episode we have to do the routine before we can go to the next one. Currently, we have one template for True Blood and I’ll describe our rules below.
True Blood Drinking Fitness Game (amended to make a single episode be more or less a full workout)
anyone cries tears = 10 body weight squats
someone dies = 1 lap around the house
someone makes love = 5 pushups
someone drinks alcohol or blood/V/trublood = 2 burpees
someone is racist/sexist/vamp phobic = 25 calf raises
Sookie responds to thoughts = 10 mountain climbers/side
someone shape shifts = 5 high jumps
there’s a fight = 10 bicycles/side
someone is invited into or kicked out of a house = 15 second plank
a main character is threatened/in danger/attacked= 5 bridges
a new supernatural being is introduced = 50 butt kickers
glamour is used =10 lizard steps
someone is shirtless = 10 bear steps/side
some says a sexual innuendo = 10 side steps/side
someone has a dream/nightmare/daydream = 1 turkish get-up
someone says “f*ck you/off” = 5 single leg deadlifts
a vampire speeds somewhere = 2 lunges/side
someone says “Sookie” or “Sook” = add one to a previously blank or lower tallied number above
a main character dies = x2 to all above
So far it’s been entertaining and usually we get a decent workout. We started adding more stipulations as we continued watching, which led to longer workouts (a good thing since True Blood episodes are about an hour long, so we are up and moving for longer periods between). Anyway, I’ll leave off this post there, especially since I keep getting distracted by the yummy smells coming from the oven telling me dinner is ready!
Eczema is a devilish disease that is best thwarted mentally (in my case) by keeping myself busy reading, researching, and daydreaming. The strongest distraction as of late has been collectives. I have always had an affinity for all sorts of collectives because I think that when the project comes together from all that cooperation, it showcases the greatness of an amalgam of multiple minds. As such I have become more aware of collective collaborations over the years, especially when it comes to the arts. As I am often entangled in women’s health, below are a few of the more recent finds that are all women/all girl collective efforts.
The Secret Love of Geek Girls is an anthology created by Hope Nicholson and other artists, of prose and comic forms, which encompasses various topics such as divorce, coming out, asexuality, young love, and other aspects all from the lenses of women who identify and/or embody the idea of a geek. I absolutely loved it. It’s an anthology I have purchased to randomly flip open pages to read when I’m feeling a certain kind of way. Also I think it would be an awesome idea to create an eczema anthology one day, to share the experiences and feelings and worlds of those afflicted.
Girls Drawin’ Girls Tarot Deck is a beautiful tarot deck done by the Girls Drawin’ Girls, a group formed by Melody Simpsons (who worked on the Simpsons). The group was formed to allow women a space to compete in a traditionally male-dominated industry. Speaking of tarot, I’ve gotten very interested in it lately. Not only does it gave a strong history of feminine mysticism but some people in the medical and health professional fields have been starting to use it as a therapeutic device. Jessica Dore uses tarot in her clinical work as she becomes a social worker, and Dr. Art Rosengarten, a clinical therapist, uses tarot for psychotherapy. There are a few older studies (like this one from the 90s) about tarot used for therapy, and the general impression I got is that due to the symbolism, tarot helps to give the clients a more visual way to process out their thoughts and bring forth aspects that are on their subconscious. In my head, if nothing else I see it as being a therapeutic tool, much like the Rorschach (ink blot) test but more multifaceted, and I would love to see more studies done on it. I personally want to learn how to do tarot readings for the storytelling aspect, but if it makes me subsequently be more in the moment, reflexive, or mindful (or if nothing else, distracted from my itches), I’m not complaining.
And since we’ve delved into tarot, and are thus already over the line and into mysticism, we must then talk about witches. The history of witches in America (as I understand it to be from listening to the tours in Salem and from this Smithsonian article), is mostly a tale of fear mongering. It started in Salem, Massachusetts (at the time the town of Danvers was also a part of Salem). A young girl and her cousin (Elizabeth and Abigail), whose slave (Tituba) used to tell them stories to amuse her and her friends, supposedly faked going into a possessed fits, their friends followed, and then religious men got involved who started calling out all witches to be persecuted (usually with the sentence of being jailed forever). A witch ended up encompassing any wayward woman (or sometimes man), such as one who didn’t behave as expected, who was promiscuous, who spoke her mind with the candor of a man, who dabbled in the art of herbal healing, etc, and evidence for arrest included visions for a time. The tension was ramped up because of various families in towns competing for resources and believing the high tensions to be the result of devilry (witches were thought to commune with the devil). I’ve heard it thought that there may have also been competition for tourism and so slandering the other parts of Salem (e.g. Salem Village versus Salem Town) with the threat of witchcraft was a surefire way to insure more money into your own town (but I’m not sure this is true- I just heard it by word of mouth). The culmination of events led to the infamous Salem Witch Trials, with 200 accused, and the death of 20 people (not including those who died in jail).
Today there is more of a new era of witch culture in America. Well there are two blurred and overlapping lines of “witches”. There are the herbalists and healers who had had a bad rap in the past for practicing medicine and healing outside of the realm of religion/formal hospital training, and then there are the new age witches (which can also include herbalists and healers). As I live very close to Salem today and Vermont/Maine, I do get glimpses of both, but only limitedly. A lot of Salem is rampant tourism like the Harry Potter store Wynott’s Wands (though their wares are beautiful and I found out that their wands sell well as batons for conductors, which is really cool).
One example of the new age of witches is HausWitch, the store creation of Erica Feldmann who describes it as “a modern metaphysical lifestyle brand and shop” where they sell “witchy” wares made by independent makers, including a lot of self care body products, journals, courses (like tarot readings and seasonally-focused events), etc. The most interesting aspect of HausWitch and stores like it are the modernization of witchcraft as an inclusive movement. HausWitch for example, works to create community and thus holds many different events and healing practices and activism discussion among other activities to foster connections. Traditionally, a bunch of witches together in a group was called a coven, and was seen and portrayed as a dangerously bad thing, but in seeing covens today, they are essentially just another form of community with the commonality, instead of being location, sparking the starting connection.
Personally, as a person who is always trying to find ways to foster community wherever I go, I think the whole new resurgence of witchcraft is pretty cool, and I’m excited to learn more about it and see where else in the country it’s happening. I am particularly biased because I have always loved herbalism and since my eczema has gotten crazy, self care, and so any movements that entails taking care of yourself and immersing yourself in a community that is seasonally-inclined, is my cup of tea.
Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).
Over the years I have gotten so much advice from well wishers about how to cure my 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, 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”.
Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).
I love me some fall.
Born right before a time of thanks giving,
All Hallows eve as the favorite,
But Dia de los Muertes too,
And the allure of the medieval faires,
costumes, candy and color.
I love the crisp air smells,
the harvest season of bounty.
Pumpkins and apples are two of my favorites,
prerequisites for my sweet tooth preferences.
Surplus of hot beverages to soothe my soul.
Autumn is my season.
At the same time though,
eczema provokes hatred of cold.
The nip of jack frost early,
Equates regression to grumpy inconsolable,
as dampness of this coast seeps into the soul.
With autumn’s arrival,
Outfits at home are often accessorized,
the thicker the better,
new wealth built by warm layers.
Snuggles are needed,
for satiety of a vampire of heat,
but alas skin prevents it from being fait accompli,
as healing is slow.
In lieu, the bath,
concoction that I brew
to foster the feel
of physical familial warm
to ward of the bite
of Autumn’s sojourn
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.
This is a post I initially wrote after talking about the different alternative medicines and their content. I never ended up posting it because I had the baby and promptly forgot I wrote it. But without further ado, here is a post that focuses a bit more on the physical aspects of one of those holistic practices; yoga.
Though I love exercising, I am no stranger to avoiding heavy aerobically-intense exercise because of the nasty skin side effects that occur during a flare (the flushing sensations, the heating skin, the sweating/wetness in flexor surfaces, the rashes, and the insatiable itching). One of the times I got the best reprieve from my flares and related skin symptoms was February of 2016 when I was doing a 200-hour yoga teacher training. I took anywhere from 1-3 classes, 5-7 days of the week in rooms with high temperatures and lots of humidity. As I breathed through new poses and slowly worked my muscles and focused on breathing and meditation, I felt stronger and better day by day. I won’t say my eczema went away because it didn’t, but the movements and concentration on my breathing did help my skin improve a lot, and in February no less (usually the winter months are worse for my skin). At the same time, practicing that much yoga naturally made me want to eat cleaner because I felt heavy if I tried to practice after eating unhealthy foods (so at the time I tried out the Whole 30 Diet).
As I tried to recover from the particular cold, damp prolonged and lingering last bit of the Northeast winter weather, I decided I wanted to make use of my teacher training and research the best exercises to promote blood flow, skin healing, and stress reduction. My goal? To help my own skin maintenance (and the skin of anyone else who wishes to try this routine). So first I’ll give a brief explanation of some the theories behind how yoga can help eczema. Then later in the post I’ll show a few poses that have been said to be most beneficial to add to a yoga practice (and mostly ones that a beginner could do) to help the skin.
From my teacher training I learned that in yoga, there are 7 major chakras, or energy cluster points, that line up with the spinal column where nadis, or channels intersect. These channels carry prana or our life force energy. Of the 7 chakras, each corresponding to a respective spot on our spinal column, the 3rd chakra, Manipura is said to be unbalanced when we see skin conditions like eczema. Manipura is located in the solar plexus and corresponds to physical body parts such as the detox organs (liver, spleen, etc). When this chakra is unbalanced, as in it is underactive, people may feel a lack of control or a tendency to withdrawal from social situations. Poses said to help invigorate this chakra include core strengthening poses such as those that entail isometric contractions, and breathing focus. This can include poses that entail twists (because they engage the core muscles to be able to do the poses well, and are said to help with detoxing).
In general all of those effects would help alleviate a lot of the issues that eczema comes with, and personally I got more into yoga because it was one activity that didn’t induce worser flares for me. Plus getting a good night’s sleep is huge, since we do so much healing when we are catching some z’s.
Here is my take on poses for eczema, though most of these poses are somewhat “general” because they are known to help symptoms of eczema (such as inflammation, bad circulation, stress), aka they benefit the skin generally. Then again, there is no “cure” for eczema in isolation, so getting up and moving and in this case doing yoga will most likely help with eczema too.
Here are specific poses I found listed on various websites that were said to help the skin (with photos of me demonstrating! Note: I won’t demo the twists as I am over 8 months pregnant at the moment).
Livestrong.com suggests a lot of inversions (or poses with the head below the heart) including:
Legs Up a Wall (beginner friendly. I only stayed here for a few seconds to take this picture before getting off my back because it’s not the most comfortable when 38 weeks pregnant).
Camel Pose (can be modified to be more beginner friendly. Note: keeping your hips pushing forward so they are lined over your knees. Also note that I am not reaching for my ankles because I am too pregnant to keep good form attempting that so I’m just reaching my arms downwards).
Wheel (needs a level of back/hip flexor mobility… wouldn’t suggest it for pure beginners and I will update myself doing it when eventually).
From healthline.com we have asanas for beginners to yoga with the intent to decrease stress (in this case for psoriasis, but stress is stress):
Child’s Pose (my big toes are touching and my knees are out wide as the mat, and I am sinking my hips down and back while reaching my arms forward. Though I am limited to how far I can stretch downwards by the baby).
Salutation Seal (never knew it was called this, but essentially you sit cross-legged, keep your back nice and tall, and bring your hands to your chest like you are praying).
And lastly, a few from HolisticVanity who brings up poses to help with inflammation:
Seated Twist (again I’ll get around to adding this photo)
Revolved Chair (ditto this one)
Warrior 1 (note that my lower back has a lot of curvature here, which is not ideal. The baby is pulled me forward and it’s hard to compensate, but generally you want to reduce some of that low back curving to make sure you are setting yourself up for the best alignment to continue the safest practice).
Chair (note: I have my feet hips width distance apart to accommodate the baby, but normally the feet are together will a little space between the heels. Also I need to relax my shoulders down more and pull my ribs in to have better form, but my ribs are also flared out because I’m 38 weeks pregnant!!).
One aspect that sucks about eczema is how detrimental it can be for finding love. A large part of our society, for better or worse, may notice visual aspects of a person such as our skin first, and having rashes and redness that many people perceive to be contagious doesn’t help much when you’re on the market. Also, even if people aren’t noticing our skin, we may think they are and be more self conscious or less confident because of our own insecurities and perceptions.
Though it can see hopeless at times, there are many people out there who do suffer from eczema (or other visible skin conditions) that find love and prove that most people do see more than skin-deep.
The National Eczema Association had a post a while back that featured a few individuals sharing their stories about their experience with having eczema and dating, marriage, and intimacy, and how they manage to live happily ever after. The post also mentioned the character traits that the interviewees found most desirable in their partners: “openness, honesty, and authenticity”.
My own experience with eczema and romance has been fairly tame. I didn’t date until I was about 20, and when I first had the global skin flare my junior year of college I just retreated into my room for the most part and focused on how to deal with school rather than focusing on romance. I think at the time I was stressed enough by school in general that dating wasn’t really on my mind, and if it was I assumed my weird personality would be more of a deterrent than my skin. Though, when I was on oral steroids and antibiotics I remember going out a lot more and being a lot more flirty in general because my skin felt better. I think personally I just shifted wildly between hiding when I was flaring badly, to going out and being extremely social when my skin was under control. My skin was a bit bad after I graduated when I was working as a physical therapy aide back in Maryland, but I think I combatted that era of life by eating better and being freakishly active. I went out dancing a lot, but also ran every day and enjoyed hours in the sun. I also generally have an easier time with the visible skin issues in the warmer months, so even though I still slept poorly, I felt more comfortable in public with my skin because I knew it wasn’t as noticeable to others. When I started dating Jake, I remember the first night I stayed over his place I asked him why he kept his socks on all the time (even when the apartment was heated), and he said he had bad eczema that looked really gross. I told him I had eczema too and that he shouldn’t have to hide his feet and made him take off his socks. When my flares inevitably came back and plagued my entire body I did have moments where I felt really insecure I’d flood him with a whole host of questions. Do you want to be with me if I never heal? If I’m always flaky? If I’m always stressed by my skin? If I never want to go out anywhere? If some days I can’t cuddle with you? I’d ask him: why do want to be with someone who’s face was also dry, swollen and puffy? I am not pretty- I don’t even have skin! He always answered that I was beautiful and that my skin wasn’t want made me beautiful, and that yes, he wanted to be with me even if I never healed, we’d just learn to cuddle with sheets between us, and that he believed I would heal and it would just take a while and there would be good days and bad. Eventually I stopped having the insecurities around my skin and our relationship, and generally I don’t worry about that even if my flares are bad, which I think has helped us get much better at handling them. So in my experience, it just takes finding the right person, and eczema doesn’t impact that.
In regards to the experience of others, Abby Lai (of Prime Physique Nutrition) had a post and video a while back about dating when you have eczema that covered a lot of her own personal experience as well as advice to both the person with eczema as well as the partner.
Funny and incredibly genuine. A very caring and intelligent person. Also, hot.
Could you see that I had a visible skin condition? If so, what were your opinions on it?
No but I became aware of your skin history early on.
Did do you know what eczema was?
Yes, I have it.
Do you understand more about eczema now since we’ve been together?
Yes absolutely. We even do research together now.
Has my eczema ever affected me more than physically?
Yes, it is a stressful disorder that has at various times lead to compulsions, fear, chronic sadness, and stress.
What are your opinions on eczema and mental health?
The former can lead to problems with the latter.
Has my eczema ever come in-between our relationship?
Not exactly, though at times it has made some common/everyday things difficult, like prolonged physical contact, temperature control, going out and socializing, and eating.
How does my skin affect you?
It worries me when you aren’t feeling well. I internalize your stress and just want you to feel better. It hurts me to see you in pain.
Have you ever had a bad experience with my skin? If so, what was that and how did you help resolve it?
Yes. During dry out periods the flaking can be extreme and requires diligent house/car cleaning routines. During really bad flares, we need to almost entirely avoid physical contact. Hoodies and blankets help with that!
When I have a bad flare up eczema how does that affect me from your point of view?
It stresses you out and is deeply frustrating to you. It restricts common activity, and makes you worry about causality, especially dietary causes.
Do you think there is enough help out their for sufferers with a skin condition? If not, how do you think this can be changed?
No, there isn’t. The biggest thing that needs to change right now is overprescription of corticosteroids. Doctors almost universally address symptoms and not causes of this disorder. There needs to be an increase in education on the relationship between lifestyle and systemic inflammation. Such a relationship is known to exist and doctors should address the root causes of inflammation long before risking potentially permanent damage via misuse and overuse of prescriptions.
What would your advice be to others who are in a relationship with someone who has eczema (or any other condition)?
It’s important to keep in mind that this is a manageable condition and to be incredibly observant of any behaviors and habits that correlate to flares.
So there’s a taste of what it can feel like for the person on the other side of the eczema curtain.
I’ll leave you with the immortal ever-applicable words of India Arie, “I am not my hair, I am not my skin, I am the voice that lives within”.