I am a distraction to myself

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Photo by Juan Pablo Arenas on Pexels.com

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)

Anytime:

  1. anyone cries tears = 10 body weight squats
  2. someone dies = 1 lap around the house
  3. someone makes love = 5 pushups
  4. someone drinks alcohol or blood/V/trublood = 2 burpees
  5. someone is racist/sexist/vamp phobic = 25 calf raises
  6. Sookie responds to thoughts = 10 mountain climbers/side
  7. someone shape shifts = 5 high jumps
  8. there’s a fight = 10 bicycles/side
  9. someone is invited into or kicked out of a house = 15 second plank
  10. a main character is threatened/in danger/attacked= 5 bridges
  11. a new supernatural being is introduced = 50 butt kickers
  12. glamour is used =10 lizard steps
  13. someone is shirtless = 10 bear steps/side
  14. some says a sexual innuendo = 10 side steps/side
  15. someone has a dream/nightmare/daydream = 1 turkish get-up
  16. someone says “f*ck you/off” = 5 single leg deadlifts
  17. a vampire speeds somewhere = 2 lunges/side
  18. someone says “Sookie” or “Sook” = add one to a previously blank or lower tallied number above
  19. 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!

how my skin made me take the road less traveled

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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.