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.

waiting on time is so friggin’ stressful!

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Today’s post starts off as a bit of a downer. I have been feeling a bit trapped lately.

First off (and I’ll need to go back and do some searching because I’m genuinely curious), of all the people out there going steroid-free/not on biologics who have eczema covering over 50% of their body (and all the concurrent fun symptoms that entails), did this degree of eczema impede or otherwise alter your life plans (specifically career goals and things of that nature)?

I ask because lately I have fallen into a rut where I feel like I am failing. I left a planned career behind because a continuously flare was deteriorating my lifestyle and because of the nagging fear that my flares would always be there holding me back, making me miserable in my field of choice (physical therapy at the time). So there I was, feeling grumpy, and wondering  how others with severe eczema who work in health professions do it. But then I talked to my husband about my frustrations, which, to be fair were compounded by the worries and stress I’ve had with breastfeeding.

So let me foray into that realm now. In a nutshell, the current issue is that Fi sometimes has blood in her stool (poop) and most doctors tell me to use formula, in lieu of focused elimination diets. This stresses me the f*ck out because one, the pediatricians have been inconsistent in their reasoning. When Fi was less than 2 weeks old I was told to use formula because Fi wasn’t gaining “enough” weight (which is pretty subjective especially since their measurements haven’t been the most accurate… but that’s a rant for another time). Instead of teaching me about different ways to entice a baby to eat more or about potential reasons why she might not be eating, I was told to try pumping once to see how much I make in a sitting, and then supplement with formula with however much I pumped to make 3 ounces. The logic was clearly my body was failing to produce enough milk. So I pumped and only made about half and ounce and I diligently tried to feed her 2.5 ounces formula. You know what happened? She only drank half an ounce of formula and then didn’t want to eat anymore. The second reason I get stressed by this push towards formula now is that initially when Fi wasn’t eating I was told to eliminate dairy and soy from my diet. When I asked three doctors about how to reconcile the fact that formula (including the hypoallergenic ones) have dairy derivatives and soy I was told 3 different things:

  • Doctor 1. The hypoallergenic formula doesn’t have dairy or soy. But it does.
  • Doctor 2. It (this was around day 10) is more important for Fi to gain weight than whether or not the formula has allergens. That’s great and all, but Fi wouldn’t take more than an ounce of formula or breast milk at a time.
  • Doctor 4: This particular other hypoallergenic formula (being prescribed at around 3.5 months due to the blood in Fi’s stool) has hydrolyzed milk protein (basically pre-digested milk proteins, in that they are broken down so supposedly easier for the baby’s digestive system to handle), while the brand prescribed to me at 10 days was partially hydrolyzed. Okay sure, but then there was no mention of the fact that the third ingredient in said formula is still soy oil.

My complaint with this process is that the pediatricians have no advice about nutritional or dietary changes. Doctor 1 told me to give up dairy and soy, and then try gluten and eggs too if that didn’t work, but openly admitted to not knowing much about how diet affects breast milk or if foremilk/hindmilk imbalances have an effect. The same doctor told me that we had to keep getting diapers tested for occult blood (invisible blood in the stool). Doctor 2 was more like “look she’s a baby. These things happen. She’s gaining weight now so we are good.” And doctor 4 was like “occult blood doesn’t matter, we only care about visible blood”. I have a hard time trusting my baby’s doctors if they are all giving wildly different advice. Oh, and another point I have to make. I didn’t seek out 4 different doctors. The practice Fi goes to usually just sticks us with whoever is available so we have seen 5 different doctors/nurses there and gotten wildly different advice from each one. Doctor 4 I mentioned was a GI specialist, which we went to see as per doctor 1’s advice.

As for Fi’s inability to gain weight fast enough from day 10? She started gaining weight (still exclusively breastfed) after we had her treated for reflux, (which I had noticed because she made gagging faces whenever she ate, and doctor 3 confirmed my suspicions go be correct). After a few weeks, the reflux abated and she was fine on that front.

My problem with this process is it feels extremely similar to how doctors treat things they can’t solve, such as with eczema. I’ve gone to state-of-the-art facilities, told a dermatologist my background including about having horrible topical steroid withdrawal symptoms, and been either convinced or scared into using steroids again (the scaring came from being told my organs would all be inflamed if I didn’t use steroids). None of them addressed diet, none of them offered any alternatives to steroids, though one did say if steroids didn’t work we would move to cyclosporin (an immunosuppressant drug used for people who get organ transplants so that their body can’t reject the new organ). That option was on the table so long as I was ready to get frequent check-ups for my kidney* to make sure it was functioning well, and so long as I knew I would be at risk for getting sick more easily. It felt like an extreme option to say the least.

*(I previously wrote liver but meant to write kidney!)

This constant push towards formula without trying less invasive means first, disturbs me. Formula and breast milk are very different. Breast milk gives Fi a better chance of not getting eczema (which she sorely needs given that both Jake and I have it) as well as helps her fight off colds by producing antibodies when either one of us is getting sick. Breastfeeding also releases oxytocin and other calming hormones to make us both happy mellow and sometimes sleepy lovelies when I nurse her (a nice boon!).

This is not to say I wouldn’t use formula if I knew it would solve her problems. But so far the evidence indicates that it may not. Her weight gain issue resolved without formula, despite it being implied over and over that my body was to blame for the issue in the first place. She could only be having weight gain trouble if I was underfeeding her, because my supply was too low, right? Imagine if I hadn’t thought to inquire about her reflex symptoms.

And if doctor 2 is right and this is stool issue just part of her developing digestive system, then we have cut her off breast milk for no reason. Plus the formula doctor 4 prescribed? It’s so expensive that there’s a black market demand for it, despite it being pretty much identical to the formula doctor 1 prescribed. What?

So anyway I have this constant lingering fear that my body is poisonous and killing my baby, so therefore I’m failing being a mother, and I can’t work first because of skin and now also because of my tenure as a failing mother, so I’mm failing as a working adult, hence the added stress of being a useless human.

I should probably qualify to say that despite Fi’ s ever fluctuating stool contents, she is quite a happy baby, still slowing gaining weight, and hitting milestones as she goes. She is  also a crazily active baby, which may be the reason she gains weight slowly as she does spend cumulatively hours a day flail kicking whatever comes her way and smiling about it.

I don’t know. I guess the problem is that I straddle unknowns so often that they are starting to get to me. It just sucks to feel like my body is constantly to blame. It feels like my skin is a fluctuating erratic b*tch and now my breast milk is too?

Another qualifier I have to add. After all these diet changes I’ve been doing, I have noticed that my skin is much less terrible this cold season than previous ones. So clearly something I’m doing is helping a little. And the same can be said about Fi. The blood on her stool has lessened so much from when we saw doctor 4 and I just started avoiding rice (which I ate all the time) and oatmeal (which I realized I wasn’t eating notably gluten-free ones (oats are commonly contaminated with wheat during processing)) and cocoa/chocolate (which has caffeine and historically I’d eat a lot of it at one time). But the other problem is all these factors take time. There’s always potentially a quick fix medication to mask the symptoms, but to actually suss out what works and prevent it from happening again takes time. And what’s more nerve-wracking then sitting around waiting to see if your changes help or hurt your baby?

And then I’ll think, well maybe it’s not my diet at all, but the fact that I have so much systemic inflammation living with eczema, and that’s affecting Fi (despite not being able to find scientific proof or any doctor that believes that that happens). I don’t know. There’s no worse feeling than the lingering doubt and insecurity that you are f*cking up your baby.

Anyway that’s the basic hum of stress I have undertoning my life lately.

To combat that hum, I have been trying to augment lived with things I know have always made me happy and continue to do so: books, and more specifically, library books. I am forever taking out book after book on all manner of subjects, to consume like it’s my calling, like ants to sugar. To this day I know I would love working in a public library; I have so many ideas swirling in my head about improvements to various existing ones to help further user accessibility and build community. I just love libraries and books. So much information right there, and for free! You don’t need WiFi or a smart phone or anything. It’s a relic of a bygone era that I think is so important for today, as it provides so many underappreciated values. You can go to most libraries, in most towns, without being a patron, and sit down and enjoy their services including free internet. Lots of libraries have free events from book clubs to baby hangouts to beer nights. Every library has its own history and is usually shaped by its community, so you can get a glimpse of what a town is like by just walking through its library doors. Plus most libraries have interlibrary loan systems where they are partnered with other libraries to make sure they can continue to supply their community with a wide array of materials. There are also some funky libraries out there including Bookmobiles or libraries with novel services like American Girl doll rentals or art and tech supplies (like with Maker spaces). Libraries are actually one of the coolest inventions mankind has created. I just can’t get over a system that lets me borrow so many stories (I think I currently have 11 out, 7 on their way through the ILL system, and 21 more on my radar to take out once I make a bit more headway with my current batch).

I frequently find myself singing to Fi (completely randomly as I haven’t seen this show in years), “Butterfly in the sky. I can fly twice as high. Take a look, it’s in a book. Reading rainbow. Reading rainbow!”

how to live your fullest life with eczema

woman stands on mountain over field under cloudy sky at sunrise
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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
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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.

my new(est) regimen

agriculture basket beets bokeh
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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.

on libraries

assorted books on shelf
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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.

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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.

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

beautiful beauty blue bright
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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.