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.

distraction, eczema, my journey

distractions and disorders

pexels-photo-1002693.jpeg
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!

eczema, my journey

rain and insomnia

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.

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.
eczema, exercise and activity, pondering

exercise is medicine for bones, but also for skin?

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A few years ago when I was living in Maryland, I was volunteering with the Montgomery County Bone Builders program. It was a group that offered community classes to adults aged 55+ to help build bone density and reduce osteopenia risk via group weight lifting. Needless to say, I enjoyed it immensely. Well, the other day I came across some notes I took from a continuing education course I took while volunteering, on exercise as medicine. As usual, I started thinking about what I had learned but now with the framework eczema. And thus I will now gift you all with my self ramblings. Not all of the bone building notes are relevant to eczema but whatever random thoughts I did have I’ll put in lavender.

 

2016 – Seminar

“Exercise is Medicine: The explosion of information today” presented by Professor Karen Thomas (a professor of exercise physiology at Montgomery College)

Exercise as Medicine – “Move”

NIH study at Brigham’s and Women’s Hospital stated that done right, there is no higher injury rate than college-aged person even when lifting heavy weight at few reps for people in nursing homes

Strength Training – use it or lose it (every day a person lies flat, as when ill, they lose 4% fitness) – So those days of relative immobilization from large flares are drastically messing up our health! 

–       muscles have 3 types of fibers:

o   ongoing = type I, slow endurance

o   strong = type II, fast

o   fibers that can go either way

–       lose strength fibers with age – body reabsorbs unused fibers and one can never get them back – It would be interesting to see if there are any correlations of increased (or decreased) incidents of eczema with lost muscle strength fibers with age

–       when exercising want to work all major muscles but especially rhomboids for older adults  

o   arms down at side, thumbs pointed out (rhomboids engaged) = can’t slouch – Finding ways to keep optimal “no slouching” positions are important also for allowing a more consistent flow of our fluids (lymph, blood, etc). 

–       some “old age” symptoms are actually just a product of lack of strength

–       need strong core (but also flexible) to protect everything else (e.g. low back) – A strong core is also important for blood flow and healthy digestion, which are crucial parts to helping our skin heal 

–       need to train people how to move in all directions (train to do activities of daily living) – Good to get lymph moving! 

humans gain muscles at same rate no matter age (so long as fibers not lost)

–       large mental component (which ties into a lot of studies in psychology about how ageism affects people’s memories and abilities… in short, if you think you can’t do something, you make it so you can’t do it)  – The mentality behind skin issues has been highly studied. Meditation, distraction, etc are all seen to help with itch sensation reports

low back pain often caused by muscle weakness

–       leg strength – e.g. squats (we also looked at how people can cheat when going to sit or get up from a chair, as by rocking themselves forward to get up or letting themselves just fall onto the chair rather than engaging their leg muscles)

Bone Density (need enough Ca2+, vitamin D and movement) – similar things we need for skin health

(bone replaces entirely every 3 years)  – skin replaces entirely every 30 days for the average person, or so my doctor told me

–       to get Ca2+ into bone, need negative charge in bone

–       bone bending/moving makes static electric charge that pulls Ca2+ into bone if vitamin D enzyme present – it would be interesting to the study the chemical reactions/absorption rates of products on the skin, moisture, etc during exercise. That and if the collagen levels in the skin change with exercise. And also what is happening chemically with the skin cells when they are inflamed and when they die/new ones are created. Looks like I need to get into skin physiology soon.

–       body parts you move, strengthen – if moving the skin helped strengthen it… that could explain why massages tends to be good for us (besides the stress component? I wonder if they have studies on the affects of massage on skin as it ages.

Training – legs further apart during exercise means less likely to fall b/c wider base of support. Want head over base of support

–       Tai Chi and dancing are good for balance – and good low impact activities for people undergoing a flare to present the sweating-to-itching issue

–       Teach people how to get off the floor via balance and motor ability so they can help themselves – mobility is an important factor for skin health too. you can develop a lot of scar tissue (especially if you spend all day scratching the sh*t out of yourself) so setting yourself up for more general body mobility will help your skin. This is also why massage is known to help people with eczema I believe, because you get the blood flow stimulation and help cleanse out irritants/chemicals. Though also I’ve been wondering about the “new” organ that scientists discovered… the interstitium, and where that will come into play with skin health and chronic skin conditions. I’ll do a separate post on the interstitium later on.

–       Challenge self by doing one sided exercises (like one arm pushups, etc) to work core

ROM (range of motion) – need to be able to move joints as far as they are supposed to move that way no compensation in other joints – again mobility. Also with theories like sanomechanics, where when a joint is loaded, the pressure is hydrostatically spread to other joints. The end result is a floating skeleton, or a balance of all the joints allowing for protection from damage. Apparently the concept is novel, but the application of how to achieve it feels a lot like a cross between meditation, yoga/tai chi/other flow types routines, and good postural alignment. But what sanomechanics made me wonder for years, was if we can accept the concept of joints “communicating” (for lack of a better way to describe it), and keeping one another in balance, why isn’t the idea that the skin behaves similarly or in combination with such “communication” not a theory? I’ll work on fleshing out more about what I mean by that later (maybe in the same post I do about interstitium).

–       so need to learn body’s ROM (different for each person)

PSYCHOLOGICAL – effects on nervous system and brain

–       painkillers mimic endorphins (but one can’t OD on self made endorphins)

–       endorphins mask pain (so good for arthritis) – And potentially itching, given some pathways of itching and pain being similar (post coming soon on this too!)

–       moving increase lubrication of joints and produces endorphins but won’t fix arthritis – but creation of endorphins may help also distract from the itchy sensations!

–       exercise wakes up brain (thalamus) – think smarter and faster (cognitive abilities)

o   elderly can think as well as younger kids but as slower rates

o   consistent exercise maintains cognitive speed

o   exercise prevents dementia (or slows it in those already afflicted, b/c more O2 to brain decreases plaque – especially in regular dementia)

The more you exercise, the less likely you will die from anything – exercise is dose related

–       150 minutes physical activity a week for adults at minimum (so 25 minutes 6 days a week, or 5 days minimum) – I’d say this is an important mark to meet in general, especially when you have a skin flare too!

–       more benefits for longer durations of exercise b/c chemical reactions ongoing – I’m curious if that would be the case with eczema flares, or is it more dependent on the activity level (low/high impact, low/high heart rate, perspiration rates, etc)?

–       want to work at intensity hard enough that one can’t have a conversation  – I tend to do body weight/weight lifting rather than pure aerobic type exercises to avoid sweating. though I will take long walks in my hilly neighborhood, which sometimes winds me (though I am 34 weeks pregnant now)

–       want to be a little sore so just exercise until tired – Would being sore help distract from flare symptoms?

distraction, eczema, exercise and activity, flare-up

babysitting with eczema

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So many searches come up with how to be a caretaker for a person or child with eczema, but I haven’t heard from, or found research more about the challenges and options for when the caretaker is the one with eczema.

This week I am watching my baby cousin. He’s about 7 months old now and his mom leaves him with me starting around 7am until anywhere from 6-8pm. It’s my first time watching an infant and though he is a delight, today required some adjustments to my routine as I overslept. Normally, when I have a rough night, I can sleep from 6-8am and catch up on some of the lost time. And then the first  thing I do when I get out of bed is take a warm shower and then apply lotion (as it helps my skin absorb it better when I shower first. Also for those interested, I am currently using Exederm lotion as my go-to).

Today however, I failed to get up before my cousin had to leave so instead I just rolled out of bed and got the baby, dry flaky skin and all. As I haven’t had enough time to zip off to take my usual shower, because I obviously can’t leave him alone for long periods of time (and I am not familiar enough with his nap schedule to know if I have enough time to shower during one), the day has come down to being a lot of a mind over matter deal about my skin. Yes I still itch, and my hands especially are quite dry, but mostly I’ve focused on the mini wheat, and by doing so I have been able to ignore my own normal tweaks and discomforts. There’s actually a fair amount of studies that show that being able to have a distraction helps decrease the itch sensation due to how itching is perceived via the brain (but more on that in a post coming soon about addiction to scratching).

Though I understand the necessity of taking care of oneself physically and mentally, before others (such as with the oxygen masks on airplanes), I do recognize when handling my skin is less than urgent. Yes, I am dry and theoretically could desperately use some more lotion, but I feel well enough that I can handle waiting to do my usual routine until tonight. That being said, after changing his diaper I did have to wash and soap my hands thoroughly which caused some cracking so I did apply lotion then. The rest of my body is holding up well enough in the meantime.

Plus the advantages of babysitting an infant are that they keep you up and moving. I probably feel relatively good because I haven’t stopped moving around with him, adding validity to the “motion is lotion” mantra. Although sweat-inducing physical activity has been seen as eczema-provoking, overall it seems there still hasn’t been enough research done to figure out what kinds of exercise are the best for people suffering from eczema. Research for moderate, non-sweat-inducing activity helping eczema has been fairly supported by organizations like the National Eczema Association, which encourages trying low-intensity activities such as yoga, tai chi, pilates, walking, and gardening. I’d love to take my cousin out for a walk but it’s currently 45F and down pouring so I’ll settle for doing some squats with the extra baby weight. 🙂

I think one of the most important things when you have a flop day in terms of your care of a chronic (non-fatal) disease is to not get too stressed out. As we all say, life happens, and so sometimes it’s best to just roll with the punches and let that bad day pass on by. So long as it doesn’t become a habit of mis-care to yourself, you’ll most likely be okay.

And so, all in all though I look like a ragamuffin and clearly didn’t take proper care of my skin today, I am not upset and I know I’ll survive one less than ideal day.

Are there any other caretakers (parents, guardians, babysitters, senior home workers, etc) who suffer from eczema and have had to forgo their usual skin care every now and then in order to take care of someone else?

 

eczema, flare-up, storytime

my “eron’s end” excerpt

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As I child I always loved reading and subsequently writing as I developed my own worlds in my mind. I have a story I started when I was about 12 years old that I have since molded to reflect various stages in my life over the last 14 years or so. Recently, inspired by my current eczema flare, I decided to personify the flare as a new section of that story. Below is an excerpt. At some point perhaps I’ll continue it.


Another goddamn visit from a Flare. This time it’s the more benign cousin of the usual suspects. She comes only with her mild temper, and only the occasional and light irritation under my skin. Though she does confuse me as to how to get rid of her- and she is particularly chiding to my cheeks and around my neck like an ever present wind that buries under my scarves.
Still, she, who I’ll call M as she is far down the crisis scale, is a mystery. She is particularly nary after I shower and irritates the fuck out of me, but then within 10 minutes or so she leaves me be more or less, minus the occasional heated moment. She tends to be a bit of a blowhard at night, especially when I am trying to get comfortable and sleep, but minus waking me up intermittently until I toss onto my other side, she mostly lets me get my rest. I much prefer her to some of her relatives, though I do wonder how I can slow some of her persistence. Perhaps she’ll leave me alone if I go and soak in the bath for a while. Though I don’t think she comes in barring infections, you never know with these unwanted guests.

“Well boys. It looks as though we’ve got another one,” the detective mused, adjusting his increasingly baggy pants waistline with one hand while he scanned the note held by tweezers in his other. His men picked themselves up from various places in the crime scene and ambled over towards him, hankering to see over his shoulder at the note’s contents.
“Another Flare has been through town. What is the point of the mayor’s extensively expensive Flare-reduction policies, if he can’t keep a- a ‘benign cousin’ from rolling through and wreaking havoc!”

His men grumbled ascension sounds in response. One officer, looking back over the crime scene absent-mindedly, almost unconsciously piqued “But sir, what if this is a worser Flare than we think? It’s possible the hostage was under duress and just using some of those techniques the good head doc has been lecturing. You know ‘mindfulness practices’ and whatnot. Or maybe the hostage has been tormented by so many Flares already, she barely knows when she’s in a bad situation anymore. Couldn’t we have a situation like that at hand here? Until we have the biopsies, we won’t know which Flare we were actually dealing with.”

The detective swiveled around to turn to look at the officer. Swiveling was getting easier now that he’d finally taken up his wife’s request and stopped indulging Sweets.

Officer McCormick. He was a newer recruit, coming from a larger town. Before working in the Eczema Dept he had worked in Staph A. and it was rumored though he was good, the stress got to him so management reassigned him to Eczema to give him some time to find his bearings. He still seemed a bit strung out though.

“Now son,” the detective started gently. “We’ve been dealing with Flares in this town since the town was first declared, and none of them has been higher than a crisis scale of H. And even then it was the result of a consumables gang-mix up triggering some interest on the low grade Flares radars. I know you must have seen a lot coming from where you did, but here in ChroniCity we don’t jump to conclusions until the evidence points us that way. Red will collect the samples for the biopsy and we’ll know who we are dealing with soon.”
“But what if it is more serious! Shouldn’t we alert Anti-Bac and Court’roids just in case we’ll need them here quickly-”
“McCormick! This small town doesn’t have the budget to be dragging out higher-ups on every whim. Like I said before, our ChroniCity is usually pretty peaceful so we will proceed as usual unless we find evidence to the contrary. Got it?”
“Understood, sir.” McCormick responded, feeling unjustly chastised. The other men shuffled about uncomfortably, all unused to hearing the detective bark out.


 

eczema, media/arts, my journey

here’s the skin-y

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Photo by Dom J on Pexels.com

Who am I: I’m a woman with eczema. I love reading, gardening (mostly indoors lately, as I live up north), writing, playing music (though I am a bit out of practice for both viola and piano), daydreaming, sunshine and warm weather, exploring areas by foot, watching horror movies with my husband and constantly talking through them, engaging in random bursts of physical activity, being ridiculous, and spending time with family and friends, and of course, storytelling.

My eczema history: I’m one of the people who was born with eczema where it initially only bothered me on the crooks of my elbows and knees, but as I grew up it progressed. Winter 2012 I had my worst flare and a Staphylococcus aureus infection (as discovered by a fluid sample from a lymph node in my neck). I believe that was the first time I went on both oral steroids and antibiotics. Since then I have had intermittent periods of flares of varying lengths of time and degrees of severity. I have been suffering from multiple occurrences of topical steroid withdrawal periods (the longest being out 13 months) and had tried various dietary modifications (avoiding gluten, avoiding legumes, avoiding dairy, eliminating added sugars). Currently I am only doing one dietary change- reducing added sugars. Throughout my eczema journey, I’ve underwent many of the traditional routes to managing the flares, corticosteroid creams/ointments, oatmeal/bleach/epsom/essential oil baths, vaseline/eucerin lotioning, repetitive lotioning, phototherapy, antibiotics, prednisone, gluten-free/dairy-free/sugar-free/legume-free diets, seeing a naturopath, taking supplements/herbal medicines, the list goes on and on. Though I’m sure some of those solutions work for others to help manage their skin issues, the long-term result is that I still have flares and that I need to learn to control said flares in new ways, because unfortunately there really are no individual guidelines when it comes to eczema. As I was briefly a graduate student in a physical therapy doctorate program, I have been using what I learned to try to apply the concepts to my own life in regards to eczema management. I have been wondering about a few other alternatives to do to help my skin during a flare, inspired by things I’ve learned while still in PT school, and I’ll post about them over time.

Other related health stuff: I have allergies, some I was born with (food ones) and some that I developed over time (animal). The foods I am allergic to are peanuts, pistachios, and cashews; environmental factors are mold, dust, grass; animals are cats, rabbits, some types of dogs. I also have a history of asthma, though I’ve been fortunate enough to have mostly outgrown it, and haven’t had to use an inhaler since I was 8.

Impact of eczema on my life: How has eczema has affected my life? I am a person that has eczema over my entire body (at least since 2012). It changes which areas are the worst, but in general, all my skin gets impacted when I flare. This has altered my exercise habits (sweating during a flare can be intolerable), how I can sit/relax (certain materials or positions cause my skin to heat up and rash more), whether or not I can sleep through the night (my skin heats up at night and my core temperature drops so I end up feeling cold while my skin feels hot, damp, and rashy ), and what my daily life habits are (I tend to itch worse when waking up, after a shower, after applying lotion, when sitting for a while, in cold rooms). The largest change I took was deciding to leave my physical therapy doctorate in 2017 program because I wasn’t sleeping, couldn’t handle manual manipulations due to necessary skin contact at times, and because I was more prone to infection from contact with healthy skinned-people who carry Staph.

What I am doing now: I have since switched into a Masters of Health Studies and am building my program as I go along. Professionally, I’ve started thinking about how to build my own company of providing information assistance to health-related businesses, nonprofits, etc. Currently, I am an intern with Eradicate Childhood Obesity Foundation, where I do anything from grant writing, to outreach, to basic website design, blog writing and editing.

Dreams: One day I think I’d like to start my own nonprofit related to addressing health disparities in communities and increasing health literacy. I’ve also had a long term dream of becoming a librarian (but more so a feral librarian, meaning a librarian that isn’t formerly schooled in a librarian sciences education) to use the opportunity to expand what people think libraries do to showcase the real potential for community outreach and modern change that libraries can hold. Bridging the two dreams, maybe I could create a nonprofit health library that offered services such as the ability to “check-out” doctors and health providers for general consultations/patron questions, as well as rental spaces and exercise equipments to host fitness and activity classes, and education seminars on various important health topics and new research.

Weird unrelated hobbies: I enjoy setting up for parties by lightly theming a room, and then leaving it like that indefinitely. Some favorite inspirations for decorating are Harry Potter and Alice in Wonderland.

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