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

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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.
exercise and activity, my journey

yoga for the atopically inclined

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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).

So first off, does yoga truly help eczema? Well, some studies have show that it helps reduce inflammation after moderate to strenuous exercise. Others indicate it helps with the glycation process (mentioned in my post about sugar’s effects on eczema), by increasing the muscles’ glucose uptake, and therefore reducing blood sugar levels.

Yoga also entails a lot of focus on breathing (which can be beneficial for both getting you to distract your mind away from the itch and improving circulation of O2). It also often includes a meditative component, and meditation has also been seen to help eczema. It can be useful for reducing stress levels and improving sleep as well.

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).

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  • 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).

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  • 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).

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  • 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).

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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).

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  • 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!!).

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