let’s get receptive: the relationship between pain and itching

black and brown coat animal on brown trunk
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When I was still in my physical therapy graduate program, we had a lecture on pain and neural pathways, and I stayed after class to ask the professor about the relationship between pain and itching because I noticed my itches sometimes felt like they traveled along a nerve (such a perk of being a PT student, you’ve got to know your nerve branchings!).

I’m reading this book now called Living with Itch by doctors Gil Yosipovitch and Shawn G. Kwatra. This book first got on my radar when I was reading a National Eczema Association post called “Itching for Answers”, and it mentioned Dr. Yosipovitch and talked about how cytokines (one of the molecules secreted by the body’s immune cells that we usually blame for our overactive immune responses), are also located in the nerve cells. The thought is that some of the nerves may have “faulty wiring” and so they are constantly firing and sending up itch signals when there is low to no itchy stimuli.

Anyway, the book goes into detail about various chronic itch-related disorders/diseases as well as the anatomy behind the itch, and it depicts the relationship of pain and itching to be almost inverse. As the book explains, we have a bunch of different sensory receptors on our external body to send information from what we encounter in our environment to our brain. One such receptor type, located in the epidermis layer (the shallow most skin layer) is the C nerve fiber, which relays information about, you got it, pain and itching. These C nerve fibers send the sensation information to a structure called the dorsal root ganglion, and then the info crosses the spinal cord and goes up the opposite side of the lateral spinothalamic tract to get to the thalamus in the brain. There the thalamus sends info about the itch sensation to other parts of the body that link it to our physical, cognitive, and emotional responses. The lateral spinothalamic tract also relays information about pain and temperature, which is important and I’ll get to in a minute.

So what do we know about pain and itching? We know our bodies’ physical response to pain versus itch is very different. With pain, we withdrawal the part of the body that comes in contact with the painful stimuli; step on a nail, you immediately try to pull your foot away. But with an itch, we immediately go to a scratch reflex. The book goes into more detail about why that is, saying that the scratch reflex causes a sort of pain, which effectively masks the itch, and we now know that is precisely because the two stimuli types do share that same lateral spinothalamic tract. And because temperature also can share that tract, this is why using cold on inflamed skin, or taking a hot bath can also mute the itch.

Lastly, the book goes into why chronic pain and chronic itch can be similar. The biggest commonality is that both involve the nerve fibers being overactive, so we perceive the pain/itch to be even more intense (this is called hyper sensitization). And yes, when the sensations are that heightened, like say you are always itchy due to eczema or another condition, something that should be painful like an electric shock, or pouring rubbing alcohol on your scratch wounds (the latter which I’ve done…) might just make you itch more!

The most recent medications/treatments on the market are called biologics (and include names such as Dupixent), and they target the cytokines that give us so much grief. For eczema, those cytokines include interleukins 4 and 13 (IL-4 and IL-13) so far, and they are working to make treatments that target more ILs in the future.

One other takeaway from the book that I thought was relevant is that the epidermis layer, when sufficiently compromised (like after it’s been scratched a lot), can have more sensitive nerve fibers because they are more exposed by the broken skin barrier. So one important treatment in managing eczema is helping to try to repair and protect the skin barrier to subsequently protect the nerve fibers. The book mentions two ways of going about this:

  1. using moisturizers with ceramide in them to help coat the skin barrier as the skin barrier lacks the protein filaggrin*
  2. using moisturizers and cleansers that are more acidic so that they help get the skin back to its normal pH range of about 4-6 (with 1-6 being acidic, 7 being neutral, and 8-14 being alkaline). Note that most soap bars are alkaline.

*A cool way to know if you genetically are lacking filaggrin is to look at your palms. People with crazy amounts of lines are generally lacking filaggrin. I’ll be talking more about filaggrin in a post later this week. Meanwhile look at my lack of filaggrin below!

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What I am curious about is why then, is it advised by so many dermatologists to take bleach baths? I understand that when diluted, bleach can still help kill a lot of germs on the skin, but if bleach is a pH level around 12 (so pretty basic/alkaline and maybe gets diluted to around 9 when in a bath), it is very far from the desired pH of our skin. If we are adding an element that further changes our skin pH, how does that help our healing? Though I guess if the pH of our skin is higher than 9, bringing it down to 9 with bleach baths would be beneficial then too.

I haven’t searched super thoroughly yet, but the most recent study I found so far indicated that bleach baths with a course of topical steroids was no more effective than just doing the course of topical steroids alone. A review tested a treatment group using bleach baths and mupirocin (a topical antibiotic) versus a control group using normal baths and petroleum jelly and found that the former was more effective, at one month at reducing Staphylococcus aureus (the bad Staph we all know), but again this is not comparing bleach baths in isolation (and the study went on to say that at 3 months there was unchanged frequency of Staph in the treatment group meaning it was still as widespread on the body, though they didn’t test the concentration to see if the quantity of Staph had changed).

Yet another study supported that the topical antibiotics with diluted bleach baths were most efficient at killing Staph, yet also noted all groups (no bleach, bleach with topical antibiotics, etc) had reoccurrence rates of Staph after 4 months. A different review on using diluted bleach talked about how bleach is awesome because it’s a ubiquitous cheap house product that kills bacteria, viruses, and fungi alike and doesn’t cause bacteria to become resistant. However, then it also talks about why the studies using it for infected eczema are lacking, and includes reasons that one might one to avoid using it such as:

  • the amount in a cleaner can vary
  • its strength can degrade over time
  • it can make dermatitis worse
  • it often contains fragrances
  • the studies done didn’t have enough people in them, and
  • there is no consensus on the optimal amount of bleach to use or how frequently use it to effectively stave off future Staph infections.

And again, I’m not sure what the role of a diluted bleach bath would be for those of us avoiding topical steroids/going through withdrawal and not currently on antibiotics.
However, given the pH of bleach alone, and then adding the fact that so many studies mentioned the frequency of Staph reoccurrence, as my skin is going okay right now, I’ll personally be using apple cider vinegar baths more frequently instead.

Amended: This does not mean I no longer take bleach baths, because I still do. I just treat them as a more aggressive maintenance treatment for the management of my skin, and subsequently take them sparingly, but as needed.

 

REFERENCES

Barnes TM, Greive KA. Use of bleach baths for the treatment of infected atopic eczema. Australasian Journal of Dermatology. 2013 Nov; 54(4): 251-258.

Chang MW, Hirschmann JV. Bleach Baths for Atopic Dermatitis. NEJM Journal Watch Dermatology. 2009 Jun 5;(nd).

Crane, Margaret. “Itching for Answers.” National Eczema Association, https://nationaleczema.org/itching-for-answers/. Accessed 23 Oct 2018.

Fritz SA, Camins BC, Eisenstein KA, Fritz JM, Epplin EK, Burnham C Dukes J, Storch GA. Effectiveness of Measures to Eradicate Staphylococcus aureus Carriage in Patients with Community-Associated Skin and Soft Tissue Infections: A Randomized Trial. Infect Control Hosp Epidemiol. 2011 Sep; 32(9): 872-880.

Gonzalez ME, Schaffer JV, Orlow SJ, Gao Z, Li H, Alekseyenko AV, Blaser MJ. Cutaneous microbiome effets of fluticasone proprionate cream and adjunctive bleach baths in childhood atopic dermatitis. J Am Acad Dermatol. 2016 Sep; 75(3): 481-493.e8.

Panther DJ, Jacob SE. The Importance of Acidifucation on Atopic Eczema: An Underexplored Avenue for Treatment. J Clin Med. 2015 May; 4(4):970-978.

“and now for something completely different”

mountains nature arrow guide
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Remember how I did a post yesterday about my skin care regime? Yeah ignore that. Much like how lives change, the way I take care of my skin is almost as fluid as my skin itself. Let me explain.

Yesterday I was talking about how I was using two products (Eczema Honey Co.’s Nut-Free Natural Healing Cream and Chuckling Goat’s Calm Down Kefir Lotion), and talked a little about them both. Well last night, Fi was fighting the sleep hard and I couldn’t get her down until around 11pm (after trying for 3 hours!), which meant that I didn’t get to catch up on the massive sleep deprivation from the night before. While I was trying to get her to calm down and sleep through various means, I was using the Chuckling Goat lotion on some dry areas (hands, feet, knees) to help work through some light itching. Finally, the little piglet stayed asleep when I put her down and I thankfully succumbed to my own exhaustion, only to be woken up around midnight by myself scratching the sh*t out of my hands, arms, and feet. It was so bad I could feel my skin starting to weep. Here’s a picture of the aftermath on my hand:

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When I woke up enough to realize what I was doing, I took some Benadryl and waited for it to kick in and knock me out. But then I had to wake up at around 3am because Fi has been big into not sleeping through more than 4 hours at a time lately, which was rough (I don’t know if you’ve ever tried to cut your sleep short when taking Benadryl, but it is hard to mentally function afterwards).

Today I started the day off (once the Fi routine was completed) with another bleach bath to help level out my skin, followed by rinsing off using the Chuckling Goat Calm Down soap bar, and then using the Eczema Honey Co cream again. I am still very much enjoying it, in fact, it’s time for a mini review!

Eczema Honey Co is a company where the founders live with eczema themselves (always a plus because you know they are actually experiencing the condition they are treating). They currently have 4 products: their original cream, their nut-free (no almond oil) version, an oatmeal scrub, and cotton gloves, and the cool thing about their line is that they have a monthly subscription, which is lovely because when you have eczema all over your body, you know that you’ll need a lot of product. The one I am using is there nut-free cream and so far I love it. It’s only got a few ingredients (Organic Pure Honey, Grapeseed Oil, Organic Grated Beeswax, Organic Sunflower Oil, Colloidal Oatmeal, Pure Spring Water, and Optiphen), which makes it easier to understand what I’m putting on my body (aka looking up the studies on how specific ingredients affect skin). This is an important factor to consider because our skin is quite absorbent and things we put on it can end up in our hypodermis and/or our blood stream (and this is even more true for people with compromised skin like those of us with eczema). Of note: optiphen is a chemical made of Phenoxyethanol, Caprylyl Glycol, and Sorbic Acid, and the biggest concern with it seems to be that it can be a skin irritant according to EWG Skin Deep Cosmetics Database. My opinion on the product overall is that it seems to be the best thing I have tried up to now. I put it on after baths or showers and it tends to hold in the moisture best like I mentioned in my post yesterday, and it smells nice and seems to be helping reduce the major TSW signs: the redness, the dryness, etc. Jury’s still out as to whether it is helping with the itch (currently it seems my itching is worst 11pm-4am and nothing can fix that minus taking Benadryl to knock me out). All in all I think for now, especially given that I have only used it for a few days now, this is the product I am going to stick with and see where it takes me and my skin. The only less than positive comment I have is that it is a bit sticky, but it’s mostly made of honey, so that’s expected. All in all I’m giving it two thumbs up so far.

Now why do I think I am enjoying this Eczema Honey Co product? It may jusr be because their first ingredient is honey, and honey historically has been used topically to treat wounds. The evidence is still a bit iffy on how effective honey really is on wounds other than partial thickness burns, with some studies toting the antibacterial properties when used for wounds (studied on the wound of a stumptail macaque), and other saying that honey can slow healing (of venous ulcers in particular). But all in all, as with most things, I think it comes down to using what you feel is comfortable (and consulting an open-minded medical professional who you can discuss your concerns and questions) to determine what you want to use for your care.

Speaking of skin (which I almost always am), I am currently reading The Little Book of Skin Care: Korean Beauty Secrets for Healthy, Glowing Skin by Charlotte Cho. So far I’m enjoying it immensely, as it goes into detail about how the Korean skincare regiment works in a nutshell, as well as how the mentality of it differs (Cho says that Koreans enjoy their skin care and don’t think of it as a chore). I am trying to think about how those of us living with eczema/TSW could learn to love our skincare regimes. It feels like such a foreign concept, but I can see how it would be an immensely helpful part of healing. So, I am thinking about how to apply what I’m reading in the book to myself and if it works, subsequently to the eczema/TSW community. Keep your eyes posted for that in a bit!

I also wondered if there are estheticians that specialize in eczema/TSW, because that would be awesome. Another idea I had was that if in some world I could learn Korean, it would be awesome to go to South Korea (with my sister who has been studying Korean for years) and experience their skin care ways for myself. But that’s a pipe dream.

On a complete and utter tangent, all I dream about lately is eating That’s It Bites, the blueberry ones in particular. But actually. I go to sleep wanting them, I wake up wanting them, and then when I am sitting around during the day, especially if I get a little bit hungry, I crave them so badly. I think I’ve latched onto them because:

  1. That’s It bars are so good
  2. blueberries are some of my favorite berries
  3. the chocolate truffle version is delicious, particularly the blueberry one
  4. they don’t have any other ingredients in them besides blueberries, apples, and dark chocolate (cocoa, cane sugar  and cocoa butter), and I’m not eating sweets with ingredients I can’t track

So basically if you are ever feeling like you want to send me something nice… send me those – insert winking face here – !

Anyway, in regards to the title of today’s post, what I meant by taking a new direction is that I am trying to figure out what my focus, both hobby and career-wise, will be. I am accepting that my skin is going to be the limiting factor for a while to come and in that interim I am trying to figure out what I can do, not just in the meantime, but potentially forever. I want to be able to start to commit to things again and know that I’ll still be able to do them even with the worst of flares. I know I’ve dabbled with writing for a while, but now I am thinking of taking it seriously (Glob help me!). If you know of any opportunities, let me know (this is my desperate reach out to the universe)!

Tangential parting thoughts: Did anyome know the reference I made with the post’s title? I credit my dad for why things like that are still stuck in my head today.

 

REFERENCES

Jull AB, Cullum N, Dumville JC, Westby MJ, Deshpande S, Walker N. Honey as a topical treatment for acute and chronic wounds. Cochrane Database of Systematic Reviews. 2015 Mar 6;(3):CD005083.

Jull AM, Walker N, Deshpande S. Honey as a topical treatment for wounds. Cochrane Database Syst Rev. 2013 Feb 28;(2):CD005083.

“Optiphen.” EWS Skin Deep Cosmetics Database, https://www.ewg.org/skindeep/ingredient/732140/OPTIPHEN/. Accessed 17 Oct 2018.

Staunton CJ, Halliday LC, Garcia KD. The use of honey as a topical dressing to treat a large, devitalized wound in a stumptail macaque (Macaca arctoides). Contemp Top Lab Anim Sci. 2005 Jul;44(4):43-45.

the reflections from the middle of midlife

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.

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!

rain-somnia

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.

how my skin made me take the road less traveled

gray pathway surrounded by green tress
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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 is medicine… 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?