how my skin made me take the road less traveled

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.

where’s my glow? (pregnancy with eczema)

pexels-photo-132730.jpeg

Today I decided to dig a bit more into the world of eczema for us pregnant folk.

I started by watching a podcast done by Abby Lai (of Prime Physique Nutrition) in which she talked with Dr. Peter Lio (he’s done a few National Eczema Association webinars). Link to Abby’s podcast is here.

The major points were:

  • It’s not really understood why but about 1/2 of pregnant women have worsened symptoms and 1/2 have bettered symptoms. Dr. Lio likened it to how some women get nausea during pregnancy.
  • You can have a flare in one pregnancy, but not in the next. Also you can have changes in skin between trimesters.
  • Dr. Lio mentioned a few itching conditions that can occur during pregnancy such as cholestasis (when liver and gall bladder slow down their bile flow which causes a terrible itch), atopic eruption of pregnancy, PUPPP (or pruritic urticarial papules and plaques of pregnancy which usually occurs during the 3rd trimester).

He and Abby then talked about treatments used during pregnancy including such as:

  • how topical steroids are okay but not most potent ones. The goal is to keep body surface area that you apply the topical steroids to relatively low (so not WHOLE body), because topical steroids go in blood if they are used long enough or over large surface areas.
  • light/phototherapy
  • Benadryl and other anti-histamines
  • wet wraps, icing, moisturizers (see my post on products I’ve tried here)
  • anti-itch creams in small amounts (such as camphor and menthol)
  • natural oils like coconut and sunflower seed oil (if not allergic)
  • dilute bleach baths (he also mentioned a recent paper shows it’s anti-inflammatory and anti-itch directly, as well as being antibacterial)
  • topical vitamin B 12 (water soluble) – pink magic

The takeaway advice he gave was don’t be afraid to use medicine so long as you have a doctor helping you.

 

I was having trouble finding full access studies but I did stumble across a PDF from the National Eczema Association about getting pregnancy, skin tips during pregnancy, and after pregnancy advice. It also talked about the likelihood of the baby getting eczema and things to hopefully prevent it.

The same study also mentioned that avoiding soap can also help decrease the disruption to the skin barrier.

In regards to when the mothers are postpartum, there can be challenges with breastfeeding if the mother develops eczema around the area. In that case, the study said low to moderate potency topical steroids can be used so long as they are washed off before the next breastfeeding.

 

(NEW) The National Eczema Association posted a new article May 2018 called Oh baby! Eczema from pregnancy to menopause that goes into more detail about why women may experience more incidences of eczema during pregnancy. It mentions how a researcher at the University of California-San Francisco (Dr. Jenny Murase) found that when a woman is pregnant, her body shifts from Th1-dominant to Th2-dominant immunity in order to protect the fetus (because Th1 attacks foreign material that get into our cells, aka it would attack the fetus since they have half of the father’s cells). Th2-dominant immunity means the mom’s body attacks allergens and whatnot that are flowing around outside her cells, protecting the fetus, but not helping when it comes to eczema. The blog post said that the shift from Th1 to Th2 is driven by the surge of estrogen. Perhaps that is also why women generally have higher rates of eczema than men? Unfortunately I couldn’t find the study that the NEA article cited so I can’t follow up with more, though I did find an abstract from Dr. Murase et al, that mentioned how psoriasis tends to improve during pregnancy correlating with those higher estrogen levels… so maybe one of the immunity-linked causes of eczema and psoriasis are opposite in origin?

My personal experience with being pregnant while having eczema has been that I have to be more mindful about how I treat my eczema relative to general lifestyle changes too. For example, no longer can I go and drink tons of kombucha (due to varying alcohol content and the light risk of bacteria), enjoy whatever random herbs I feel will help me heal, go jump into a hot yoga class unprepared (because getting dizzy affects another being besides myself), eat whatever fish I want whenever (I am a tuna fan and enjoy sushi when not pregnant), run and jump into a hot springs all willy nilly, etc. I have to be more mindful about sharing my body and not just jumping into whatever new protocol or thing I want to try out to help my skin. I can’t decide to just go on a particularly aggressive dietary change that involves caloric restrictions or drastic nutritional adjustments.

That being said, being pregnant has also had a lot of changes that might be helping my skin. In my first trimester I was very sugar and meat adverse, so I ended up eating a lot more veggies. Now in my third trimester I tend to crave veggies as a way to keep my guts feeling good, and to keep indigestion at bay. I also eat smaller meals more frequently, and don’t really accidentally binge eat big meals mindlessly, which is great because it means my body isn’t overtaxed in digestion (more time to heal the skin!). Pregnancy has me feeling a bit more tired (and much like with a flare, also avoiding high intensity activities), so I tend to stick to lower impact, longer duration activities like going for walks for miles or remembering to get in 100 modified push-ups a day.

Anyway, I’ll stop there and leave you with a current photo of me. I’m about 31 weeks pregnant now and you can see my arms and hands in particular are especially topically-challenged.

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REFERENCES

Crane, Margaret W. Oh, baby! Eczema from pregnancy to menopause. National Eczema Association, https://nationaleczema.org/oh-baby-eczema/. Accessed 30 Apr 2018.

Lawton, Sandra. “Pregnancy and eczema”. Exchange, https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=20&ved=0ahUKEwj3hO2D-9jaAhWmc98KHRNhAusQFgjGATAT&url=http%3A%2F%2Fwww.eczema.org%2Fdocuments%2F711&usg=AOvVaw2fS6lrX7fvyosOV1imHE4p. Accessed 30 Apr 2018.

Murase JE, Chan KK, Garite TJ, Cooper DM, Weinstein GD. Hormonal effect on psoriasis in pregnancy and post partum. Arch Dermatol. 2015 May;141(5):601-606.

Silverberg JI, Hanifin JM. Adult eczema prevalence and associations with asthma and other health demographic factors: a US population-based study. J Allergy Clin Immunol. 2013 Nov;132(5):1132-1138.