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.

“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:

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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.