community, eczema, media/arts, NEA, relationships

how to live your fullest life with eczema

woman stands on mountain over field under cloudy sky at sunrise
Photo by Victor Freitas on Pexels.com

Two days ago I was working on a post where I mentioned a book I was reading (The Little Book of Skin Care: Korean Beauty Secrets for Healthy, Glowing Skin by Charlotte Cho) and how it explained that Koreans have a different mentality about their skin. Their attitude is that skin care regiments are to be enjoyed, rather than thought of as a chore. My thoughts were that it would be amazing if there was a way to cultivate such an attitude into the lives of those with eczema, to get us to see managing our skin not as a burden, but as something we could learn to embrace and therefore lovingly treat ourselves during our routines. My hope is that the better the attitude we can have about the inevitable (having to put in a lot of time to manage our skin), the better we can mentally feel about living with eczema. Speaking of living with eczema…

I watched a webinar from the National Eczema Association that same night called Unhide Eczema: Storytelling for Healing. It features 3 speakers, including Ashley Lora, Alexis Smith, and Mercedes Matz who each went into detail about their experiences with eczema and how they found community through opening up about their individual journeys living with eczema.

The major takeaways from the webinar were:

  • show the world your skin. Don’t hide away and fear the general public’s response but rather embrace your skin and “unhide eczema”,
  • change how you talk about yourself and eczema. Don’t say you are suffering from eczema, but rather say you are living with it. The power of words is remarkable, and having an empowered attitude or at least one of acceptance is so important, especially as it is a part of you. So change the way you talk and change the way you think about yourself and eczema, and
  • speaking of empowering, empower yourself and others by sharing your story. You’d be surprised by how many people have eczema and need to know they aren’t alone.  The power of telling your story might even help you heal!

The idea of empowering oneself when you have eczema and sharing your stories brought me back to an article I had recently stumbled upon about a woman who cured her eczema through faith. Specifically, it was this woman’s power of belief that drew me. I think it can be so hard to find a way to keep believing you will heal when you’re stuck in the midst of a bad flare, and that is when it becomes essential to find your voice and talk about what you’re going through. Whether this is sharing a story about being miraculously cured, or of just finding a product that made you feel just a tad better, the ability to speak up and open up abour your experience is such a powerful tool. For one you are giving yourself a voice, regardless if it’s driven by frustration or elation.

You’re also you’re giving yourself a chance to build community (which I’m sure by now you know I’m obsessed with, but for good reason). Community is so important in this day and age because not only can you pass down the wisdom of the products you’ve tried, but you can continue to reinforce that you are not alone. I can’t state the value of this enough.

Just imagine you are in a public place (let’s say a movie theater) and you start to scratch an itch on your neck and you are feeling self conscious because you didn’t cover up your eczema with clothing layers today, but instead of sinking into your seat or averting your eyes, when you notice the person sitting next to you watching you scratch, you speaking speak up (before the lights have dimmed and the previews have started of course). And said person is like, “Wait, you have eczema too?! Omg have you tried x? And did you hear about the meet-up to visit the new eczema clothing company? Free samples! Oh and have you joined the eczema walking and group? Heard about the fair? Tried the eczema yoga morning classes?” And then someone else overhears your conversation and they chip in, and then another, and then before you know it you’ve made all these new connections and been inspired by all these new ideas on how to augment your own care and all it took was not worrying about hiding your flared-up neck, and being willing to chat. On a side note, apparently the NEA’s annual Eczema Expo is a lot like that dialogue interaction (I hope I can go this year!!).

My point is you have to be brave and take a chance. If nothing else comes of it, at least you are increasing awareness, and that alone helps trickle into better attention by the powers that be, which can lead to policies changes, shape doctors’ standard protocols, cause businesses to make new product lines, etc. Plus you spoke up and expressed yourself, which is huge. It is so important to not feel like you have to hide the part of you that is as impactful and long acting as eczema.

I’m totally with the #unhideeczema movement because it can be so damaging to have to modify everyday life habits to take care of your skin that the last thing you want to do is hide away, not to help heal, but because you feel ashamed. There is no reason to be ashamed. Over 31 million people in the U.S. alone have eczema. You are not alone.

And so that is why I think it’s so important to take these chances, speak up, show some skin! Because this is your life, and yeah you may be living with eczema, but don’t let that stop you from living!

And here’s a recent picture of me living it up with Fi in our comfy autumnal pajama apparel.

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One last thing, if you don’t know where to start telling your story, get some ideas from the National Eczema Association. The organization goes into more detail about the mental benefits of writing your story in a recent post here.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

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alternative/holistic medicine, books, career, eczema, flare-up, my journey, skin care, sugar, topical steroid withdrawal, wounds and infections

“and now for something completely different”

mountains nature arrow guide
Photo by Jens Johnsson on Pexels.com

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:

2018-10-17 20.21.01.jpg

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.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

eczema, flare-up, my journey, skin care, topicals

my new(est) regimen

agriculture basket beets bokeh
Photo by Pixabay on Pexels.com

I successfully (so far at least) staved off a flare! Generally as the seasons change towards their colder demeanor, my skin freaks out. As I have gone through topical steroid withdrawal for about 4 of the last 5 winters, I’ve learned that this time of year includes symptoms such as:

  • a baseline of my skin getting redder,
  • little pimple-looking marks on my arms and legs especially,
  • thermoregulation issues at night especially, which start with what I liken to non-menopausal hot flashes of the skin while my core feels freezing,
  • a thickened and discolored layer of skin developing all over, and
  • an insatiable itch thats origin is probably more related to the inflamed nerves as the itch can travel.

On worser years there was also skin weeping and other gross exudate but luckily this time around, as I haven’t used steroids in about 11 months (and when I was using them they were not a strong), this flare’s symptoms seemed to be more benign. That being said, I also am a seasoned TSW sufferer now so I know more or less how to handle the onset of a flare.

Firstly, diet. I luckily am in the midst of multiple dietary changes for the sake of Fi and her developing digestive system, and so I have already been avoiding dairy, soy, gluten, and eggs (all as per suggestion of the pediatrician), and coconut and corn for good measure.  Then I recently eliminated rice and oats, which apparently are other common allergens a breastfeeding baby can have (which I learned by word of mouth from a physicians assistant’s coworker). I’m at the stage where everyone, especially pediatricians, joke about how I have nothing left to eat but air, and it’s getting old. Essentially my diet just means I have to (aka Jake has to) cook all my food at home. My meals have become neither meat- or carb-based, which completely confuses the majority of people I meet. Here’s an example of what I ate yesterday. I had 6 separate food dishes that I rotated around to make 3 meals. They were as followed:

  • a cold salad of chickpeas, cucumbers, red cabbage, vinegar, and some peppers
  • a pulled chicken with a graoefruit sauce in lieu of BBQ, cooked with onions, kale and other spices
  • a quinoa dish with poblanos, dried apricots, and spices
  • braised rosemary potatoes
  • baked and salted chickpeas
  • chorizo, “riced” cauliflower,  pinto beans, onions, garlic, kale and other spices, and
  • a warmed apple with cinnamon for a sweet treat

So clearly I still have plenty I can eat. But I digress! My point is, my diet is currently avoiding a number of inflammatory and common eczema-inducing foods.

So now that we’ve gotten past food, the next factor in my skincare during a flare (that rhymes!) is figuring out the topical stuff. First, I end up taking much more frequent baths. The pimple looking stage is what triggers me to take a bleach bath, the redness drives me towards Epsom salt baths, and the residual heat or skin discomfort and dryness warrants apple cider vinegar baths. Epsom baths tend to dry me out so I use them after bleach baths when I know the bacterial overload has been decreased and now I need something to dry out the dead crusty exudate layer.

Then comes the moisturizing stage. Lately I have been using two products. Eczema Honey Company’s product Eczema Honey Original Natural Healing Cream, and Chuckling Goat’s kefir lotions (first the rosemary, now the lavender one). I think the Eczema Honey Co works a bit better. It tends to provide a better barrier and seal in moisture better, plus the honey works as a light and natural antiseptic. It’s downside is that it separates from the oil in the mixture pretty quickly so I have to stir it a bit before use, and that it is so sticky! The Chuckling Goat lotions are better for the inflamed days as it seems to help dry out the excess heat and redness.

Lastly, there is the stress factor. I have gotten pretty good at distraction (as mentioned in one of my previous posts), which truly does help keep my flares under control. I just don’t let them get to me for very long. It’s really a godsend right now because I haven’t been sleeping so well (partially because I’ve been under the weather, partially because my skin heats up like crazy when I’m under a blanket, and partially because a few days ago Fi started randomly waking me up every 2 hours to feed. Apparently it’s possible that I was producing less milk while sick and so she needed more feeds in to get the same amount as usual. Anyway, the point is that my sleep has been compromised.

Instead other things I’ve done to try to help my skin include drinking a lot more water (something I am historically terrible at), and taking probiotics and the daily prenatal. I have also been making sure to do some kind of physical activity, usually the True Blood Fitness Game (see the post here), but also yoga when my insomnia gets bad, and generally just passing around the house holding Fi for “cardio”.

It’s slow going, but I seemed to have been able to skip over most of the worst of the inflammation phase, save for a few elephant skin wrinkles and the telltale cuts in my hands as they dry out. I’m hoping the difficulty with sleep (and the whole aggressive skin heating up in bed) dissipates. Work in progress with that.

Ugh. Overall my feelings (mostly formed based on how my skin reacts) are that I am not a fan of when the cold seeps in and it feels like nothing can stay warm. Until I can consume copious amounts of hot tasty beverages and treats for fall and live dressed in a thick comfy blanket, this time of year is bleh! Sometimes I think I was meant to be a bear because hibernating through the cold months seems ideal.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

books, eczema, libraries, my journey

on libraries

assorted books on shelf
Photo by Element5 Digital on Pexels.com

I mentioned this before but eczema has given me lots of time to read, partially because it keeps my hands busy to hold a book, and partially because when I have the worst of flares I don’t have the energy to do anything besides curl up in a ball on the couch with a blanket draped around me and turn pages while trying to minimize any movement of the rest of my body. Luckily the latter hasn’t happened in a while, but since I have gotten back into the swing of reading, I have renewed my relationship with libraries (pun intended). I had gotten my new town library card a while back but recently I have been aggressively making use of it. We’re talking 10 books at a time and steadily getting 1-2 more books each week (yes I have a problem).

Anyway, historically, I have always been a voracious reader. I have memories of being ten and sitting down under the playground reading fictional adventure novels while kids ran around me. This happened only if the book was magically compelling, and surprisingly lots of YA fiction novels are at that age.

I also distinctly remember the awkward moment when at a family reunion I was hiding away under a bed reading the newest Harry Potter book when someone sat on it. The mattress springs crunched above me uncomfortably, so I snaked out an arm and gently tapped the family member’s ankle, sending them into an understandable jump-off-the-ground-in-total-fear-mixed-with-surprise moment. I stopped hiding under beds to read soon after (partially because I grew too big).

I also remember years and years of trying to read during car rides while sitting in the back of my mom’s old Honda van on that way to visit some family, and feeling car sick from focusing on the words swaying about with the car’s inertia.

As I also love things that are free (catch me in my hand-me-down clothes even as a late twenty-something mom), my love for libraries is not much of a surprise. My earliest memories of libraries are glimpses of bright lig t shining through musly building windows and rows on rows of colorful books. I remember getting excited that I could pick out whatever I wanted and the smell of old books and how I loved feeling the pages of a wellworn novel. Those strong sensory experiences continue to evoke my love.

There are also unidentified memories of accompanying my Oma, my best friend’s mom, and many others to unfamiliar libraries on book returning errands, and memories of playing those generic learning games on those chunky monitors screens.

I remember as an elementary school student, that we had those book fairs (done by Scholastic Books I believe), which excited me to no end, and always happened in the library. I was one of those kids that liked to get some new books, and those cutesy erasers.

I remember as a teen, trekking up the half mile or so from my house to the local public library, often with my friend Julia, to see what books we could find next. We had voracious appetites for fiction and fantasy, and I remember ambling through the shelves often picking books to read based on their titles or their cover art when I had no specific “to-reads” in mind. When I moved back home with my parents after college, I restarted my walking sojourns to said library, mostly to resume my enjoyment of fiction novels in between work.

I remember in high school, after tearing my ACL and not being able to run track and field senior spring, I hung out in the library with my “potluck” friends (so named because our hangouts started via a potluck meal). My grades actually improved while there so I graduated with an even higher GPA thus avoiding the stereotype of “senior slump”. And it was there that I started Pet Sementary and had my first intro to Stephen King and to more adult horror books (I had enjoyed Goosebumps when I was younger).

In college I made myself a home at the science library (Cornell) on my free time, and started working their my sophomore year as a library assistant for work study. My now husband recalls always making sure to come chat with me when I was at the front desk as he was already crushing on me. I remember getting to work the closing shifts on nights and weekends and as a result, getting to be one of the last people in the library. I wasn’t a night person so that was often exhausting, but also a weirdly surreal experience as the  building that housed the library (called the science center) was generally emptied out on weekends at that point with most of the lights off. It was quite peaceful.

I remember my friend Becky and I staking our claim in a space and waiting it out in the college’s larger library (McCabe), working away until 10pm when they brought out the snacks. It was also a common library for group study as there were these study rooms on the upper floors if you wanted more privacy. I went back recently and some of the layout had changed (on the main floor at least) and it was so disorienting. Seeing a library change, even if it is for the better (which it was) is such a sucker punch to the memory.

For graduate school (MGH Institute of Health Professions in Boston) I would hide away in this attic-esque corner of the library with my friends, where we would study and sometimes practice physical therapy techniques on one another on the floor, but more often than not we would chat and enjoy life while simultaneously complaining about the breadth of material to study.

I once accompanied Jake last minute on a business trip to Ybor in Tampa, Florida. While he was doing his work thing, I decided to kill time by investigating the local library (the Robert W. Saunders Sr. Public Library). I had to walk about 2 miles to get there but it didn’t deter me. I always find it fascinating to see libraries in new states. I didn’t get a lot of time to explore it but I saw that it offers meals to those in need between 11:30am and 12:30pm and had different historical plaques and pictures about it like those below.

Screen Shot 2018-10-11 at 3.29.23 PM

Screen Shot 2018-10-11 at 3.29.39 PM

I also worked in the Cambridge Public Library when I was volunteering for the Eradicate Childhood Obesity Foundation and got used to navigating around one of the biggest (and oldest) library establishments in the country.

And now I have my town library where I currently do effectively drive-bys: running in to acquire books on hold and returning the books I’ve read before taking the munchkin home. I also, on occssion, explore the small town libraries nearby, getting jealous at some of the beautiful redone buildings and children’s sections. Most of all I look forward to Fi getting older so I can instill my love of books in her, spread my love of libraries and share my memories made in them while we make new ones together.

Parting note: if you are someone that wonders how libraries will stay relevant in a society where most everything is accessible online and via our phones, you should read the book Bibliotech: Why Libraries Matter More Than Ever in the Age of Google by John Palfrey. Palfrey explains multiple reasons that libraries are important, besides just to borrow books. There are a few other books I’ve read about libraries and their history and/or significance that I’m happy to talk more about if asked.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

career, eczema, my journey

the reflection from the middle of midlife on a quarter of said quarter life

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.

eczema, poems

riddle me this (inspired by insomnia)

adorable animal animal photography animal portrait
Photo by Dhyamis Kleber on Pexels.com

What’s got both ridges and valleys
which tell time,
Can withstand the weight of mankind
but not for long,
Can be used for love or hate
and to experience the world,
Has languages of its own
but can also be quite mindless
Can lead to one’s destruction
or to one’s survival
Can be the epitome of cleanliness
or the harbinger of disease
Can create masterpieces
or deal with mistakes,
That most everyone has?

eczema, my journey, skin biome, skin care

there are germs on my skin! part 2

selective focus photography of person wearing three bangles
Photo by Godisable Jacob on Pexels.com

It’s my favorite time of year and I just received my Chuckling Goat package (but more on that in a bit).

2018-10-02 13.40.38

A few months back I wrote a post about the skin biome and how I was excited by the small movement of companies creating products geared towards helping it. Since then there have been developments about different companies creating products to help either work with the natural skin biome or to help reintroduce micro-diversity to create an appropriate balance for healthy skin.

I didn’t know it previously, but Johnson and Johnson had a movement a while back to create products that didn’t mess up the skin microbiome of babies’ skin. Such products, like Aveeno Eczema Therapy Moisturizing Cream have a trial indicating that they actually help to increase the microbiome diversity of the skin with use over time.

The company has become skin microbiome-focused in a multitude of ways, including offering use of their JLINX incubator under the JLABS. S-Biomedic has joined JLINX and is working to create products that remove the bad bacteria and replace it with good ones to balance out the diversity of the skin back to a healthy level. This idea of balance is becoming more and more accepted as it is found that overuse of antibiotics is causing more harm than good for conditions like eczema. Studies are showing that balanced diversity is what we need for our skin biome, rather than sterility (noting that antibiotics still have their place, including when surgery or infection is involved). Microbiome transplants are now no longer a thing of the future but are instead potentially the next big medical treatment protocol!

More recently, I read a book called The Good Skin Solution by Shann Nix Jones, that talked about the gut and skin microbiome and Jones’ personal experience as to how she came to develop a treatment to help manage her young son’s eczema. The goal was to help increase the diversity of both microbiome using the probiotics in kefir made from their goats’ milk. When it was a success with their son, her and her husband decided to sell their products and hence the Chuckling Goat business was born.

Jones reintroduced me the theory that you need to fix your gut microbiome to have any really lasting effect on your skin, but she added the idea that it’s best to treat both at the same time, (hence her her program that includes probiotics for both the skin and the gut). Needless to say I was intrigued so I looked into her products and went on to order some (but unfortunately I can’t get the kefir drinks because I live in the states and they don’t ship that outside of the UK).

Today the soaps and lotions arrived and I am beyond excited to receive them (happy as a clam… or a ceramic jack-o-lantern!). See my spoils below:

2018-10-02 13.40.42

I’ll have to figure out what to do to increase my gut flora diversity in lieu of kefir, as I was advised to avoid dairy while breastfeeding to see if that helped with Fi’s digestive woes. I’m not sure if goat milk would be okay since it is supposed to have less allergenic components than milk. I may just wait until Fi is done breastfeeding.

 

REFERENCES

Capone K, Klein SL, Kirchner F, Tierney N. “Effects of Topical Lotions on the Atopic Dermatitis Skin Microbiome and Associations with Itch and Skin Barrier Function.” 76th Annual Society for Investigatiev Dermatology (SID) Meeting, Portland, OR. 26-29 Apr, 2017. Poster presentation.

Myles IA, Earland, NJ, Anderson ED, Moore IN, Kieh MD, Williams KW, Saleem A, Fontecilla NM, Welch PA, Darnell DA, Barnhart LA, Sun AA, Uzel G, Datta SK. First-in-human topical microbiome transplantation with Roseomonas mucosa for atopic dermatitis. JCI Insight. 2018 May 3;3(9):e120608.

Parikh-Das A, Ganopolsky I, Nunez C, Moreira L. A clinical trial to evaluate the efficacy of a OTC colloidal oatmeal skin protectant cream in the management of mild to moderate atopic dermatitis in infants and toddlers. JAAD. 2017 Jun 76(6);AB10.

Puniewska, Madgalena. “How the Microbiome Could Transform Your Skin in Surprising Ways.” Johnson&Johnson Innovation, 12 Oct. 2017, https://www.jnj.com/innovation/how-the-microbiome-could-transform-your-skin-in-surprising-ways.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

eczema, my journey, pregnancy, skin biome, skin care, women's health, wounds and infections

using boob milk for more than the baby

agriculture animal blue sky breakfast
Photo by Pixabay on Pexels.com

As some of you may know I am currently nursing my 3 month old baby girl, and in doing so as she is my first, I’ve learned that leaking is a thing (sometimes it occurs when she’s nursing on one side- the other side will start to drip milk, and other times they seem to leak for no apparently reason at all). As I wear nursing pads in my shirts during the day, the problem begins at night when I’m in bed trying to sleep. The leakage then can be really annoying. So my most recent solution has been spreading the milk on my skin, because why not- it’s already leaking all over it anyway.

My less impulsive logic for trying this experiment came from some research I had been doing a few weeks ago about breastmilk and its health benefits for the baby. Fi got sick and I wanted to know how her immature immune system could handle sickness when she only intakes breastmilk as her food source. This search led me to an internet viral photo showing how a mom’s breast milk changed when her infant got sick. The 2013 study mentioned in that post talks about breast milk’s immunological function and explains how when the mom or baby get sick, the number of leukocytes (aka white blood cells) in the breast milk drastically increases to help protect them, because leukocytes help fight disease (which I found to be such a cool example of symbiosis. I personally have also noticed that breastfeeding seems to keep both me and the baby from getting too severe of sicknesses. In fact, my mom, mother-in-law, and husband each got sick after the baby was born yet Fi and I were fine!).

I also read an article by NPR addressing the breastfeeding versus formula debate for poor countries.  A point it stated made me more curious about breast milk; it said formula can cause increased risks of diarrhea and respiratory infections. I assumed this is so because it requires using water to make (and clean sources are not always available in impoverished countries) but maybe it’s also because formula doesn’t have the same chemical and bacterial composition to allow it to be readily accepted by the baby’s developing digestive and immune systems? By extension I supposed that breast milk had to have some component in it that generally allows it to not irritate the digestive and immune systems*… which is my big sign to think “MICROBIOME” (* this of course is excluding when the baby has allergies or sensitivities to something the mom is eating that is going into her breast milk). The article also talked about how it’s weird that we are constantly trying to research the benefits of breastfeeding when it’s as natural as “breathing, chewing, hearing, passing stool”. But we live in a society where we need evidence and so I decided to play the game of informal (and badly controlled) science to see if I could test my own theory, that breast milk may help with (eczema) healing.

I did not participate in the rigors of the scientific process because I am lazy and I doubt Fi would be content amusing herself long enough for me to do it, but instead I just dabbed some breast milk on my shallow cuts every now and then instead of using neosporin or leaving the cut alone. My observations: it would seem as though breast milk can help with reducing the pain of shallow cuts (I tried it on the cracks on my knuckles and outer ears, cuts on my ankles and hands), and helps to speed up the healing of said cuts. It does not moisturize (the spots I put it on tended to be drier the next day… though that could be because when cuts heal on me, they start skin flaking…) but overall, the spots I put it on did seem to heal up and achieve a cleaner scab and softer skin around it.

Apparent cons of this experiment? The milk can sometimes burn (but again, everything burns when it touches my inflamed skin spots… even water) and it’s also a little sticky but it dries sticky-free. Fun fact, I have a pet peeve about being sticky. I hate it. So much.

After this self experiment, I was more curious to support why I might be seeing the results I saw so I did some low level cursory research. Also speaking of research, I received my diploma the other day. I officially have a Master of Science in Health Sciences from MGH Institute of Health Professions. I am now a MASTER of science. The academic title of master seems somewhat archaic; I envision myself similar in status to an entry-level alchemist or and mage, as I have established myself in a trade, but it will still take years to perfect my craft. Anyway…

There’s not a lot of recent research being done (or at least it’s not readily available yet) but I did come across two recent ones. This first paper, of which I could only access the abstract, tested wound healing of the cornea (yes, of the eye) in mice using human breast milk, milk from mice, artificial tears, and the control group. The results were that the human breast milk caused the fastest healing, followed by the mouse milk. The other two groups (artifucial tears and the control) were still not healed by the end of day two. The other study I found was published in 2015 in Nature, and it was titled, “Human milk proresolving mediators stimulate resolution of accuse inflammation”. It came to the conclusion that the lipid mediator-specializing proresolving mediator profile (a ratio of sorts between lipid mediators and specialized proresolving mediators) in human milk helped the macrophages (or cells that engulf bad bacteria) to contain pathogens and remove dead cells (in a process called efferocytosis- my word of the day). It is important to note that this was seen in vivo (in mice), and that breast milk was not applied topically to the skin. If the results are applicable to humans, I see this study as being useful because people with eczema suffer high levels of inflammation internally not just on their skin, and because turning off the inflammatory phase is also important in wound healing (more on this in a later post).

After that article I backtracked and wanted to know more about what breast milk is, which led me to this document that included the various components of breast milk (though I can not find the professor or the molecular virology lab anywhere else on the web…). Also note that the tables say the various factors are tested “in vitro” meaning not in the organism (for example, secretory IgA from breast milk was probably removed from breast milk and tested in a petri dish against E. coli). Even so, the breadth of potential abilities of breast milk, due to its staggering list of factors alone was interesting in its own right.

In conclusion, though I don’t think breast milk applied externally heals the mother’s eczema or TSW, I do think it can help me with superficial wounds, especially when it’s the middle of the night and I am otherwise unmotivated to leave the bed even if I’ve been scratching.

 

REFERENCES

Arnardottir H, Orr SK, Dalli J, Serhan CN. Human milk proresolving mediators stimulate resolution of acute inflammation. Mucosal Immunology. 2016, May 9;9(3):757-766.

Asena L, Suveren EH, Karabay G, Durson Altinors D. Human Breast Milk Drops Promote Coreanl Epithelial Wound Healing. Curr Eye Res. 2017 Apr;43(4):506-512.

Brink, Susan. “Why The Breastfeeding Vs. Formula Debate Is Especially Critical In Poor Countries.” Goats and Soda, https://www.npr.org/sections/goatsandsoda/2018/07/13/628105632/is-infant-formula-ever-a-good-option-in-poor-countries?utm_source=npr_newsletter&utm_medium=email&utm_content=20180719&utm_campaign=goatsandsoda&utm_term=nprnews. Accessed 1 Oct 2018.

distraction, eczema, my journey

I am a distraction to myself

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!

alternative/holistic medicine, eczema, media/arts, travel/traveling, women's health

girl power! on collectives and community (and witches!)

photo of multicolored abstract painting
Photo by Free Creative Stuff on Pexels.com

Eczema is a devilish disease that is best thwarted mentally (in my case) by keeping myself busy reading, researching, and daydreaming. The strongest distraction as of late has been collectives. I have always had an affinity for all sorts of collectives because I think that when the project comes together from all that cooperation, it showcases the greatness of an amalgam of multiple minds. As such I have become more aware of collective collaborations over the years, especially when it comes to the arts. As I am often entangled in women’s health, below are a few of the more recent finds that are all women/all girl collective efforts.

The Secret Love of Geek Girls is an anthology created by Hope Nicholson and other artists, of prose and comic forms, which encompasses various topics such as divorce, coming out, asexuality, young love, and other aspects all from the lenses of women who identify and/or embody the idea of a geek. I absolutely loved it. It’s an anthology I have purchased to randomly flip open pages to read when I’m feeling a certain kind of way. Also I think it would be an awesome idea to create an eczema anthology one day, to share the experiences and feelings and worlds of those afflicted.

Girls Drawin’ Girls Tarot Deck  is a beautiful tarot deck done by the Girls Drawin’ Girls, a group formed by Melody Simpsons (who worked on the Simpsons). The group was formed to allow women a space to compete in a traditionally male-dominated industry. Speaking of tarot, I’ve gotten very interested in it lately. Not only does it gave a strong history of feminine mysticism but some people in the medical and health professional fields have been starting to use it as a therapeutic device. Jessica Dore uses tarot in her clinical work as she becomes a social worker, and Dr. Art Rosengarten, a clinical therapist, uses tarot for psychotherapy. There are a few older studies (like this one from the 90s) about tarot used for therapy, and the general impression I got is that due to the symbolism, tarot helps to give the clients a more visual way to process out their thoughts and bring forth aspects that are on their subconscious. In my head, if nothing else I see it as being a therapeutic tool, much like the Rorschach (ink blot) test but more multifaceted, and I would love to see more studies done on it. I personally want to learn how to do tarot readings for the storytelling aspect, but if it makes me subsequently be more in the moment, reflexive, or mindful (or if nothing else, distracted from my itches), I’m not complaining.

And since we’ve delved into tarot, and are thus already over the line and into mysticism, we must then talk about witches. The history of witches in America (as I understand it to be from listening to the tours in Salem and from this Smithsonian article), is mostly a tale of fear mongering. It started in Salem, Massachusetts (at the time the town of Danvers was also a part of Salem). A young girl and her cousin (Elizabeth and Abigail), whose slave (Tituba) used to tell them stories to amuse her and her friends, supposedly faked going into a possessed fits, their friends followed, and then religious men got involved who started calling out all witches to be persecuted (usually with the sentence of being jailed forever). A witch ended up encompassing any wayward woman (or sometimes man), such as one who didn’t behave as expected, who was promiscuous, who spoke her mind with the candor of a man,  who dabbled in the art of herbal healing, etc, and evidence for arrest included visions for a time. The tension was ramped up because of various families in towns competing for resources and believing the high tensions to be the result of devilry (witches were thought to commune with the devil). I’ve heard it thought that there may have also been competition for tourism and so slandering the other parts of Salem (e.g. Salem Village versus Salem Town) with the threat of witchcraft was a surefire way to insure more money into your own town (but I’m not sure this is true- I just heard it by word of mouth). The culmination of events led to the infamous Salem Witch Trials, with 200 accused, and the death of 20 people (not including those who died in jail).

Today there is more of a new era of witch culture in America. Well there are two blurred and overlapping lines of “witches”. There are the herbalists and healers who had had a bad rap in the past for practicing medicine and healing outside of the realm of religion/formal hospital training, and then there are the new age witches (which can also include herbalists and healers). As I live very close to Salem today and Vermont/Maine, I do get glimpses of both, but only limitedly. A lot of Salem is rampant tourism like the Harry Potter store Wynott’s Wands (though their wares are beautiful and I found out that their wands sell well as batons for conductors, which is really cool).

One example of the new age of witches is HausWitch, the store creation of Erica Feldmann who describes it as “a modern metaphysical lifestyle brand and shop” where they sell “witchy” wares made by independent makers, including a lot of self care body products, journals, courses (like tarot readings and seasonally-focused events), etc. The most interesting aspect of HausWitch and stores like it are the modernization of witchcraft as an inclusive movement. HausWitch for example, works to create community and thus holds many different events and healing practices and activism discussion among other activities to foster connections. Traditionally, a bunch of witches together in a group was called a coven, and was seen and portrayed as a dangerously bad thing, but in seeing covens today, they are essentially just another form of community with the commonality, instead of being location, sparking the starting connection.

Personally, as a person who is always trying to find ways to foster community wherever I go, I think the whole new resurgence of witchcraft is pretty cool, and I’m excited to learn more about it and see where else in the country it’s happening. I am particularly biased because I have always loved herbalism and since my eczema has gotten crazy, self care, and so any movements that entails taking care of yourself and immersing yourself in a community that is seasonally-inclined, is my cup of tea.

 

REFERENCES

Blumberg, Jess. “A Brief History of the Salem Witch Trials: One town’s strange journey from paranoia to pardon.” Smithsonian.com, https://www.smithsonianmag.com/history/a-brief-history-of-the-salem-witch-trials-175162489/. Accessed 17 Sept 2018.

Dore, Jessica. “Tarot + Psychology: An Interview with Dr. Art Rosengarten.” Jessica Dore, https://www.jessicadore.com/tarot-psychology-interview-dr-art-rosengarten/. Accessed 17 Sept 2018.

Heaney, Katie. “Does Your Therapy Need More Tarot?” The Cut, https://www.thecut.com/2018/07/does-your-therapy-need-more-tarot.html. Accessed 17 Sept 2018.

Semetsky, Inna. Integrating Tarot readings into counselling and psychology. Spirtuality and Health International. 2005;6(2).

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).