can you have a career with eczema?

architect composition data demonstration
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Last week in my email I saw a post from NEA about a woman named Helen Piña who described what it’s like for her to have eczema with her job. I was intrigued, as eczema (specifically topical steroid withdrawal) has completely derailed my initial career plans, and because Helen is the first person I relate to whose flares got crazy in the early 20s. I can definitely relate to her about causing little clouds of skin snow to rain down when leaving a spot (ugh), as well as trying to figure out when to scratch but also staying mindful to not end up doing it randomly while working. My catch was that I worked as a physical therapy aide and so I had to do be in close quarters with patients, leading them through exercises and demonstrating activities, so I really didn’t feel comfortable having so a degree of skin issues around them. Physical therapy school was even more difficult in that regard because then I did have to physically manipulate patients (can you imagine trying to stretch someone’s hamstring and them seeing little skin flakes falling off of you?). Personally, I always felt incredibly self conscious about it as it also seems like a health risk. Needless to say, it did factor into my decision to leave that field. That being said, I find it extremely encouraging to hear about how people make it work, keep their careers, and find an new normalcy in their day-to-day.

Nowadays I have been inspired to find other lines of work to that fit my skin too. But more on that another day. Also there are many inspiration people that created careers from having eczema or having someone in their life who does. Take for example, Abby Lai (a holistic nutritionist and creator of Prime Physique Nutrition) or Karen Fischer (nutritionist and writer of The Eczema Detox and other books), and many others.

Speaking of day-to-day life. I signed up a while back to be on the mailing list for the National Eczema Association’s Ambassador program, which means that when the opportunity arises, I am wiling to go meet with various people involved in making policies around eczema to voice my own experiences in hopes of shaping the policies directly around patient input (if you’re interested, here’s the link to the NEA ambassador page). A few days ago an email came through asking for ambassadors who were interested in going to Chicago (with a stipend, food and lodging covered, and travel expenses covered up to a certain amount). I think it’s amazing that the NEA is acting so efficiently as a liaison between the people experiencing eczema and the people and organizations who are doing the research and making the policies that will affect the people with eczema. It feels like their liaisons will definitely create a more lasting impact on the treatment of this condition as it is hitting the nail on the head on more than one front (with the afflicted and with the policy makers). And also it’s awesome because when are you offered a chance to have basically an all-expense-paid trip to go and try and change the policies that impact your day to day life?

 

how to handle a baby when you have eczema

white bed spread near a human foot during night time
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For the first few days after having my little one, I was on such a high of nerves and adrenaline that I felt great!  I had been on antibiotics while in the hospital, and after getting home my skin started to feel really dry. I started taking some probiotics and focusing on drinking lots of water (I knew getting enough sleep was a lost cause), and keeping my stress down.

Initially, my skin was calm enough that I had no problem doing skin-to-skin contact with baby Fi, but around week 4 or so I started to experience more flare symptoms- sweating, itching, redness- whenever I had the baby lay on me for too long. I started to have to wear long sleeves when holding her to not get overheated. I’m not exactly sure when this happened, but it may have also correlated when the humidity increased, and the temperature with it.

I’m not sure if it was due to the antibiotics, the temperature, the lack of sleep, the terrible diet I had in the hospital (think chicken fingers and ice cream for multiple meals in a day), or the hormone fluctuations but my skin definitely became more sensitive post-pregnancy. Though estrogen has been considered one of the reasons women can flare-up worse during pregnancy (see my post about pregnancy and eczema), after pregnancy the estrogen drops so it’s unclear what would be provoking my symptoms (besides the above mentioned items).

Either way I’ve had to be more creative about adjusting to life with a newborn. The biggest aspect I’ve had to cultivate is endless patience mixed with quick stress-reduction habits. My lackadaisical approach to getting house and life stuff done has been somewhat of a saving grace because my little one has wreaked havoc on my schedule. I’m exhausted in the afternoons, I have no idea what it feels like to sleep more than 3 hours at a time anymore, I tend to eat a bit worse now (mostly eating too many carbs and too much) because I lack the self control to stay as dietarily balanced when I’m sleep deprived. It’s something I’ll have to work on in the coming months.

I find ways to not focus on my skin when it’s getting all sweaty from holding her and I have learned to wear light layers or wrap a small blanket between her and myself when breastfeeding to avoid irritating the more sensitive skin areas like my stomach.

There are some inherently awesome aspects to having a newborn when you have eczema (at least in my experience). For one, I tend not to think about myself as much so I am not as aware when I am itchy. She keeps me busy to such an extent that even when I’m immersing my hands in water (which is traditionally a huge irritant) to give her a bath, I barely notice. Also, lately my core temperature seems to be evening out even as my skin fluctuates (which means that the hot, sweaty skin nights and cold shivers have been decreasing). I actually enjoy the cold temperature more than I used to, and I don’t enjoy basking in the sun for quite as long.

And overall I do think that my skin has been able to consistently heal slowly but surely. I feel as though I look more or less human again, what with the redness decreasing.  I think the hormones from breastfeeding are helping my skin heal to some extent; I know my hair has gotten shinier, which is an awesome boon.

rain-somnia

selective photography of glass window with drops of water during nighttime
Photo by Mark Plu00f6tz on Pexels.com

My thoughts at 4am this morning:

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.

herbaceously delicious: herbs for eczema

green leaf plant on brown wooden surface
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I have decided to start a new series within the blog. I have had a deep and abiding love for herbs and gardening since I was a wee one (I used to try to collect dandelion roots to make my own coffee around age 12, despite the fact that I didn’t drink coffee. Anyway, I digress). As a result of said love, I have decided to really delve in and learn about an herb, and then I’ll hopefully try to use that herb to create something (be it edible, a body product, incense, or other) to use to help manage my eczema.

Currently, my garden looks like this below, so I’ve got a lot to work with (basil, wood sorrel, marshmallow, licorice, oregano, sage, thyme, rosemary, raspberry leaves, chives):

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To start off this series, I collected basil from my garden last week. I have two types, sweet basil, and English basil, but I only used the sweet type.

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Sweet basil, or (ocimum basilicum), is an edible herb of which we eat the leaf and flowering top. It’s other names include St. Joseph wort, arjaka, and luole.

  • ocimum = ‘smell’
  • basilicum = ‘kingly’

Historically in Europe it was a symbol of love/romance and of grief, and it has associations with the Basilisk (it was thought to be poisonous in the past).

To grow it you need rich, well-draining but moist soil, and full sun. It can grow well in containers too if you don’t let it flower. The season to grow it is in summer.

For food: It’s usually used in soups, salads, with eggs, most red meats, in tomato sauces, or in general cooking. I’ve also heard of it being used in ice cream though I have yet to see or try it. It combines well with vegetables such as zucchini, beans, and mushrooms.

It’s key constituents include:

  • essential oils
  • caffeic acid
  • tannins (estragole and eugenol)
    • estragole can have a sharp/hot and numbing effect
    • eugenol is in cinnamon and cloves; it imparts a spiciness
  • monoterpenes
  • beta-carotene
  • vitamin C

It can be used to make teas, tonics, poultices, etc.

It is used to help with:

  • itches and pain (of bug bites and other small wounds)
  • removing heavy metals and toxins from the body
  • promoting the growth of hair, specifically oily types
  • melancholy/low spirits and headaches/stress (due to its antispasmodic properties)
  • fatigue if it’s steeped in wine (so if you are going for a glass anyway, might as well add some basil in there)
  • deterring flies (though I am not sure how well that works)
  • indigestion, stomach cramps, relieving nausea and vomiting, and easing gas (because it’s an aphrodisiac)

Given that basil is a pretty frequent herb in our savory meals already, (and because I can’t eat dairy currently for Fiona, so alas no basil ice cream), I decided I wanted to use it in a non-edible manner. As I’m always thinking about my skin, I decided to make it into a skin toner. I talked about it a bit in a recent post (korean skincare for eczema), but here’s a picture of it again:

Screen Shot 2018-08-03 at 8.56.26 AM

The final product was lovely. It was refreshing and smelled delightful. The recipe I used is here, and I did add a little witch hazel. It’s fairly gentle on my skin and in the future I may try it without any witch hazel.

Just in case the above link ever gets taken away, the recipe was as followed:

  • bring 3 tbsp freshly crushed basil leaves to a boil for 4-5 minutes
  • remove from heat and let cool to room temperature
  • strain leaves from mixture
  • add teaspoon of witch hazel (optional)
  • place liquid in a bottle (glass preferred)
  • store in refrigerator for one week

To use:

  • pour about a teaspoon onto a cotton ball and gently dab onto face as wanted, or
  • freeze and then use the cubes on face as a pore minimizer after a wash

 

And that’s it!

how my skin made me take the road less traveled

gray pathway surrounded by green tress
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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)
  • oral steroids
  • 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)
  • ocean water
  • chlorinated pools
  • naturopathy
  • acupuncture (including herbs, cupping, and massage)
  • diet (gluten free, soy free, dairy free, vegetarian, sugar free)
  • phototherapy (clinically done in light boxes, and just being in the sun)
  • antihistamines
  • sleep aid pills
  • yoga, meditation, and deep breathing
  • coconut and sunflower oil
  • bleach, epsom, and apple cider vinegar baths
  • antibiotics
  • collagen powder (edible)
  • collagen cream
  • wound care
  • probiotics

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.

korean skin care for eczema: the overview

BoysOverFlowers_A5GLDKW
Source for the cover photo is here.

A few years back I came across an article about how a woman named Kathleen Hou managed to keep her eczema in check by using Korean skin care routines/products. Naturally I was intrigued, but the level of steps involved was so daunting to me (I tended to be a frolics-in-the-sun-and-to-h*ll-with-my-skin kind of girl before my eczema got bad), that I never bothered to try it out.

Well, I was watching a Korean drama the other day (comment the name of that drama pictured above if you know it!) and was again struck by how flawlessly nice all of the actors’ skins were, including the men. Being in a TSW phase I felt like a flaky snake in comparison and decided to rethink about trying Korean skin care to see if it could help me. My sister reminded me of the article by Kathleen Hou, so I followed up with checking out her company Peach and Lily and began more seriously looking at the section titled The Best Korean Skin Care Routine.

However, Korean skin care routines are amazing and intense and I’m not ready to commit to that level of time a day or money involved to get the products just yet (but stay tuned for a few months from now). So in lieu of going fully into it, I’ve decided to try my own proxy way for a month or so.

My routine is as followed. Every morning I take a shower (still I do a fairly warm to hot shower though I know it’s not optimal for my skin… baby steps) and I use a natural bar of soap that’s sold at whole foods. I can’t remember the specific brand but it’s got calendula and chamomile in it.
After that I use cotton balls to apply a toner to my whole body. I’ve been using the Thayer brand that makes witch hazel infusions (I’ve tried lavender and am currently using a cucumber one) but now I am leaming towards making my own toners so I made a basil one yesterday (it’s got a little bit of witch hazel in it too). The recipe I used is here. My toner came out like this: Screen Shot 2018-08-03 at 8.56.26 AM.png

Then I apply a moisturizer. Right now I have been alternating every now and then between Exederm and and MG217. Eventually I’ll get around to giving it a go at making my own, but I’ll do it after I try this for a month.