career, eczema, my journey

a quarter of life reflection

beautiful beauty blue bright
Photo by James Wheeler on Pexels.com

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.

alternative/holistic medicine, eczema, exercise and activity, flare-up, food and nutrition, my journey, NEA, pregnancy, relationships, skin biome, skin care, sugar, topical steroid withdrawal, topical steroids, topicals, women's health, wounds and infections

my deviation from the beaten path

gray pathway surrounded by green tress
Photo by Skitterphoto on Pexels.com

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.
books, eczema, media/arts, topical steroid withdrawal, topical steroids, travel/traveling

eczema representation in media/arts

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Though eczema isn’t the most glamorous of conditions, there is a growing body of representation of people with eczema in various mediums. As I come across more, I’ll update this post with the caption NEW.

 

TV SHOWS/MOVIES/DOCUMENTARIES/THEATER

  • One of the most notable now is Peter Moffat’s HBO series, The Night Of, which features the character John Stone, who suffers from aggressive eczema on his feet. Throughout the show we see him try various techniques to manage his eczema including bleach baths, Chinese medicines, airing his feet out, slathering Crisco and wrapping his feet in plastic wrap, UV light, etc.

phzntkc1kw2qbwe(photo source here)

  • (NEW) There is also a theater production called ECZEMA! created by Maria Fusco that embodies eczema in a creative way through writing, plays, music (including a musical backtrack of the sounds of Fusco scratching). There’s an interesting article written about it here.
  • (NEW) Briana Banos, a former performer and aerialist has created a documentary called Preventable: Protecting Our Largest Organ, to educate the medical field all about the horror of life with topical steroid withdrawal, and why topical steroids shouldn’t be so freely prescribed.

 

BOOKS

There are also a handful of personal storytelling books about people’s own experiences with eczema, with the authors all having very diverse backgrounds. For example:

And we’re also seeing a growing movement of children’s books about eczema such as:

 

COMICS

These prove a lot harder to find (which is unfortunate because I love webcomics!) but here are the two I stumbled across by Ms. Yoshimi Numajiri, (found on Tommy’s Skin of Rose blog).

 

ECZEMA ENTREPRENEURS

You also see a lot of entrepreneurs, whether they are doing eczema coaching of some sort, or have created a specific product/ product line. A few include:

conqueror-balm-photo-24_1024x1024@2x.jpg(photo source here)

INSTAGRAM

Naturally instagram has become an amazing platform for expression. There you can find awesome people including most of the entrepreneurs mentioned above.:

  • Daniel Boey (the Godfather of Singapore fashion)
  • Karen Fisher (of Eczema Life)
  • Michelle (of Sunstone Kimonos)
  • Jennifer (of The Eczema Company)
  • Abby Lai (of Prime Physique Nutrition)
  • Cara Ward
  • Bronya (a makeup artist who does amazing and color eye and face makeup despite her facial eczema)
  • (NEW) Briana Banos (Preventable: Protecting Our Largest Organ documentary creator)

 

YOUTUBERS

Of course with youtube we have vloggers too- some that focus all on eczema and others that talk about eczema and its effects around the other aspects of their lives.

  • Zainab Danjuma
  • Brookie Beauty
  • Josh Wright – a pianist and piano teacher that made a video talking about his experience with eczema and TSW and what he used/did to get through it. He also made a post about it here.
  • Dr. Nina Ellis-Hervey – she gives advice about her general body care routines, and this particular video shows how she manages her eczema. She also includes how to make a homemade body butter.

 

BLOGGERS

And of course, there are tons of blogs out there made by dedicated individuals who are spreading the word about what living with eczema is like:

 

MODELING

More and more people are also trying to spearhead showcasing diverse bodies, especially in modeling.

  • Missguided – though not eczema-specific, a new part of their #KeepOnBeingYou movement has models showing off their bodies regards of having “imperfect” skin with the #inyourownskin campaign.

 

So if you are out there feeling like you suffer from a condition that no one gets, or that isn’t really seen in the media, don’t feel alone! There are lots of us out here each expressing ourselves and living with this condition in our own ways, just waiting for you to find us. And many of us are open to people reaching out as well. 🙂

 

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).

eczema, exercise and activity, my journey, topical steroid withdrawal

elephant skin

pexels-photo-148807.jpeg

My skin is going through what I believe to be another topical steroid withdrawal. My reasoning? I have excessive wrinkling on the extensor surfaces of my skin (I call this stage of skin my “elephant” phase, and I’m not alone; see the study here), and I was on a moderately potent steroid ointment for most of my body and a lower potent one for my face/crooks of elbows and knees when I found out I was pregnant. What finding out I was pregnant meant for my skin was that, because the more potent one was not necessarily safe for a growing baby, I was taken off of it earlier than planned and told to use just the lower potency one all over my body instead. Unfortunately my thicker skin areas were used to the higher one so the response was less than ideal and I ended up still flaring a lot as I did my low potency taper. I gradually phased out using the lower one despite some discomfort because having to use topical steroids over such a large surface area of skin does increase the risk of it being absorbed into the bloodstream, making it more likely to affect my baby.

So in a nutshell I had a fairly quick taper and now am cold turkey off all topical steroids again. The result has been interesting. This winter has dragged on which means I have been starved for vitamin D, more sluggish from being trapped indoors, and cold. Whenever I have a withdrawal, my skin is hotter to the touch because it is acting as an impaired barrier and letting my core temperature heat go. The result? I am a grouchy popsicle of a human.

Luckily, we have finally seen a break in the northeast chill, and I was able to enjoy the weekend basking in the sun and walking for miles. Hopefully getting outside and playing more will help me get my skin back to its old equilibrium before the baby comes.

Nighttime presents its own problems. Though I am less stressed about losing sleep nowadays (having a remote job helps), I do find that physically sleeping is still a trigger. The last few days I have had hives that appear on my back when I am in bed (but not in the same part of my back each day which would have made me think it was my sheets or  lotion). I also tend to get heat rash-like symptoms on whatever side of my body I am laying on, or even if I roll over to lay on my back for a bit. I haven’t figured out why that is, but it’s extremely irritating and usually affects my IT band area on my legs the most. And naturally since I am awake weird hours, I notice how my skin dries out as the night goes on (but I am usually too tired to actually get up and re-apply another coat of lotion/moisturizer).

My methods of combatting this withdrawal flare are the following:

  1. keeping calm. I have been extraordinarily unfazed by my skin this time round. I am not worried it will never heal, and I am not worried when I miss sleep (I just try to take more cat naps later on or go to bed the next day at crazily early times like 5pm).
  2. diluted bleach baths. I tend to take one many once every one or two weeks just to make sure I keep the potential infections at bay. I usually know when I have had bad scratching bouts or see signs of what I think may be early infections, and I decide when to do these baths by those feelings.
  3. sugar reduction. Yes, despite being a sugar-lover, I am trying to cut down on added sugars. I don’t even put sugar in my oatmeal anymore (instead I cut up a fresh green apple into it or add berries if I have them). I let myself have one treat on Saturday and Sunday, but I make it so I have to work for it (like walk 2 miles to get the treat, then walk back).
  4. finding a good product for the skin presentation. Lately I’m hooked on Exederm’s daily care moisturizer. It doesn’t stop me from still drying out and flaking but it also usually doesn’t burn or cause excessive itching (except sometimes at night, but my skin is an unpredictable animal at night).
  5. living the “motion is lotion” motto. I have been trying to increase my NEAT (non-exercise activity thermogenesis) meaning I have been trying to reduce the time I am a sedentary lump. The warming weather is helping (I will happily walk anywhere in my town even if it is a 1-3 mile walk one way), and I have been doing a 100 push-up challenge every night before bed (I do modified pushups as my belly has been getting bigger!). I also started incorporating more hip workouts and squats/lunges to keep my legs in shape as this baby grows. All in all, “I like to move it, move it”.
  6. showers first thing. When I get up from bed (which sometimes is a struggle in itself), I get into the shower to start my day. One, I find it therapeutic, the feeling of water. Two, it helps me soften the skin and wash off some of the dead skin so that the lotion/moisturizer can be better absorbed. Three, it bases me in a routine.

All in all I feel like I am handling this withdrawal much better than previous ones. My skin has more or less remained skin-colored this time (instead of reddening everywhere). I’ll give updates if it starts to subside or if it gets worse in time.

Oh and here is a photo of what I mean when I say I have elephant skin (this is my right knee):

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