all posts, mental health

on acceptance and chronic illness

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I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂 This entry was written in April 2019.

It has been 6 years (more or less) that I have been dealing with what seems like severe skin issues. When this all started in 2013, no one knew what was happening to me, and various assumptions were made. My mom strongly believed the cause to be that the off-campus housing I was living in was too dirty. My dermatologists thought it was from improper skin care. My doctor thought it was from a staph infection. My specialist thought my symptoms had a hormonal component and the likely cause was my birth control pills or the pituitary adenoma they found on an MRI of my brain. I thought it was from topical steroid usage.

But whatever the cause, the medical treatment has been about the same no matter who I saw (and see). I’m advised to moisturize more with different moisturizers and then prescribed rounds of antibiotics and prescription on prescription of topical steroids (and often oral steroids too if I’m looking particularly bad). The result has also been the same- some clearing up of the skin, followed by a precipitous dive into new flares as I taper off the steroids. It’s almost like my skin is addicted to steroids. What I mean by that is that because I have been applying exogenous (not made from my body) steroids for so long, my skin has adapted. So when I stop using the steroids (or at this point, when I start decreasing the amount as recommended) my skin, having slowed its natural cortisol production in response, suddenly can’t remember how to make enough cortisol. As the blood all rushes back to the skin, with it comes all the inflammation that the topical steroids had kept at bay. (Oh and as an aside, the reason people can’t stay on topical steroids forever is because it thins out your skin over time and can also make you very sensitive to sunlight).

With addictions generally, I’ve heard you can take one of two approaches: drop it cold turkey or reduce it measurably over time. Both types of approaches have been attempted with my skin. The research behind tapering when your skin is already addicted has been changing a lot and so every doctor has a slightly different plan about how to do it. Unfortunately, every plan results with me having worser flares from the moment I start the taper. It is for that reason that I usually opt for the cold turkey approach.

The problem with cold turkey is that I haven’t lasted more than 2 years. At some point I’ll eventually give in and go to a new dermatologist and they will scare me into using steroids and antibiotics again. One told me my organs were also inflamed because my skin was (this was said off-handedly when I mentioned my fear of topical steroid withdrawal. No tests were done to confirm such a statement). Another said my choices were steroids or cyclosporine (an immune-suppressant given to patients getting organ transplants so their bodies don’t reject the new organ. To be on them requires kidney function monitoring, and your ability to fight off things like the common cold is reduced). Another said that skin regenerates by every 3 weeks so there was no way my skin would still have issues with tapering off. And yet another said I should just use topical steroids as needed just on my rougher spots, but then gave no general instructions about how long “as needed” is, if the skin keeps flaring.

This isn’t a blame game towards dermatology (anymore: that was an older stage of grieving). At this point I am more interested in the cultural acceptance for myself and by others of this state of being chronically ill. I’ll be honest, it’s incredibly difficult to do for myself. I constantly think about how life will be if and when I heal, what things I’ll be able to pick back up, what things I’ll be able to try. But deep down I have to accept I might not heal. Lately, I’ve been banking on biologics (Dupixent) to save the day and I just keep being like “okay I’m breastfeeding now but once we’re done, so long as I dont plan to have another child, I can go on these groundbreaking but experimental drugs.” I have to think about life decisions in that way because no one knows the effects of these medications on fertility or pregnancy, and if I use them I am not willing to take the risk. Harder still is that their efficacy isn’t even guaranteed!

As a result, I’m always forced to think ahead. So much of my experience as a first time mother has already been influenced by my condition. It’s not just dry skin. My body reacts like it’s allergic to everything, even to holding my baby’s head on my bare arms when breastfeeding. I always wear loose flannel over myself to not have that skin contact. I can’t give my baby baths as easily because my hands freak out from that kind of water exposure (washing my hands in general makes my hands itch like crazy and sometimes break into hives). I can’t do crazy sweat-inducing heat-generating workouts as easily without needing breaks to let my skin cool and dry off so I don’t scratch myself to death. This also means carrying my baby strapped to my body on a warm day eventually makes my stomach flare up. I am becoming increasing sensitive to new allergens, like developing allergies even to my childhood dog and a lot of my friends’ houses.

This condition also impacts my ability to sleep. Sometimes I’m kept up at night by my baby, but often times it’s my condition that does it; my skin going through thermoregulating issues or being triggered by friction, sweat, air temperature deviance, my husband’s body heat, stress, etc all irritating my body so I am either scratching or my skin is heating up and weeping, or cracking as it dries out. It’s a neverending battle to not fear going to bed though I know I need the sleep, because I get so nervous about how uncomfortable the night will be.

And then all the while that I’m slowly learning to accept my own condition as a state of being, I have to figure out how to validate myself to the world. The most common attitude I receive from others is that I am just negligent in using moisturizers, which results in a lot of product recommendations from coconut oil to castor oil, Eucerin to Aquaphor. The challenge is getting people to realize that it’s not just a dry skin issue. I often have sporadic allergic reactions to products (no matter how natural) because it’s an autoimmune issue. Over the past few months I have reacted to coconut oil, and then vaseline, and then vitamin E oil. Now all three are fine to use.

This condition also impacts what I can eat. I once had a date (the fruit), and immediately broke out hives all over my lips. This happens with foods I previously could and will again be able to eat. The reason is because my issue is internal. The skin is just an unfortunate symptom. And yes sure, if I can consistently figure out how to keep my skin closed (no weeping or open wounds) maybe my other symptoms will slow, but my skin didn’t flare up one day in 2013 in a vacuum; something else triggered it.

The next challenge I face is convincing people that this is more than skin deep. I have had people tell me that eczema (the blanket term for having rashes like mine anywhere on your body) is not an autoimmune disorder. One, it definitely is, and two, when you get to my severity level (aka chronic and where the whole body is affected) you have to recognize something else is at play. My eosinophil levels (a type of white blood cell) are often off the charts. I’m talking 6000 units when normal is 60. And again my inner mouth and throat aren’t affected by eczema yet they break out in hives fairly randomly. My digestion also can get messed up at a drop of a hat and I often know I’m in a healing phase when I have bowel movements again. Not to mention joint swelling and swollen lymph nodes even in regions of my body where the skin is intact. My body’s immune system is definitely overactive.

The next issue comes from dermatologists. I honestly don’t know why I keep expecting a different plan of care, as their profession literally meaning the study of skin, but I’m always bummed when they come at me from the approach of only how to fix my skin. Like I said, the problem is my skin isn’t the cause. So if they just give me meds for my skin, I finish the medications and the symptoms return because the cause hasn’t been found and treated.

All this is to say that finding a way to accept my life as it has become, and getting others to realize what it’s like has been difficult. I’m naturally a very anxious person, and the rapid onset of this condition followed by years of being a “medical mystery” and now basically a non-compliant patient (at least towards any derm that recommends steroids yet again without having new scientific evidence proving efficacy in case studies similar to mine) have made me quite wary. I don’t have good faith that people will understand what it’s like or why I am constantly reinventing my future. Why I constantly change my diet. Why I adopt these “hippie” approaches to skin care like refusing topical steroids or going moisturizer-free during wet flares. I’m not trying to be difficult or ignore medical advice. I’m working to figure out this body I’m in as it is, and treating it gently as I re-meet it and get to know it, accepting that yes, I may now always be chronically ill even though I still remember a time when that wasn’t the case. And yeah maybe there will be a cure and/or I will heal one day, but until that time I have to meet myself where I’m at now.

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all posts, community, eczema

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.

all posts, community, eczema

can you have a career with eczema?

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Last week in my email I saw a post from NEA about a woman named Helen Piña who described what it’s like for her to have eczema with her job. I was intrigued, as eczema (specifically topical steroid withdrawal) has completely derailed my initial career plans, and because Helen is the first person I relate to whose flares got crazy in the early 20s. I can definitely relate to her about causing little clouds of skin snow to rain down when leaving a spot (ugh), as well as trying to figure out when to scratch but also staying mindful to not end up doing it randomly while working. My catch was that I worked as a physical therapy aide and so I had to do be in close quarters with patients, leading them through exercises and demonstrating activities, so I really didn’t feel comfortable having so a degree of skin issues around them. Physical therapy school was even more difficult in that regard because then I did have to physically manipulate patients (can you imagine trying to stretch someone’s hamstring and them seeing little skin flakes falling off of you?). Personally, I always felt incredibly self conscious about it as it also seems like a health risk. Needless to say, it did factor into my decision to leave that field. That being said, I find it extremely encouraging to hear about how people make it work, keep their careers, and find an new normalcy in their day-to-day.

Nowadays I have been inspired to find other lines of work to that fit my skin too. But more on that another day. Also there are many inspiration people that created careers from having eczema or having someone in their life who does. Take for example, Abby Lai (a holistic nutritionist and creator of Prime Physique Nutrition) or Karen Fischer (nutritionist and writer of The Eczema Detox and other books), and many others.

Speaking of day-to-day life. I signed up a while back to be on the mailing list for the National Eczema Association’s Ambassador program, which means that when the opportunity arises, I am wiling to go meet with various people involved in making policies around eczema to voice my own experiences in hopes of shaping the policies directly around patient input (if you’re interested, here’s the link to the NEA ambassador page). A few days ago an email came through asking for ambassadors who were interested in going to Chicago (with a stipend, food and lodging covered, and travel expenses covered up to a certain amount). I think it’s amazing that the NEA is acting so efficiently as a liaison between the people experiencing eczema and the people and organizations who are doing the research and making the policies that will affect the people with eczema. It feels like their liaisons will definitely create a more lasting impact on the treatment of this condition as it is hitting the nail on the head on more than one front (with the afflicted and with the policy makers). And also it’s awesome because when are you offered a chance to have basically an all-expense-paid trip to go and try and change the policies that impact your day to day life?

 

all posts, eczema, nutrition

the magic of medicinal ideologies

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Something that has always fascinated me has been the underlying ideologies behind medicine of different regions/cultures, be it modern western science, naturopathic medicine (which can blend a lot of the holistic and western medicine practices), traditional Chinese medicine, Ayurveda, or yoga.

As western medicine is the most familiar, I will talk about that briefly at the end.

The other day I went to a Qi Gong and Tai Chi school where I talked with one of the instructors about the concepts behind medical Qi Gong. We talked a little bit about my skin and the instructor mentioned how the skin and the liver are connected in the Chinese ideology and so if the skin is showing lots of signs of disease, there may be an issue with the liver’s digestion. She also mentioned that I would be a person expected to have an imbalance of yang over yin. Yin and yang are seen as complimentary energies that keep the body in balance, with yin being the cooler, more feminine energy, and yang being a hotter, more masculine one.

In regards to nutrition, when I was seeing an acupuncturist a few years ago, she also talked about the dietary components that might be causing my skin issues. She also believed that I had an imbalance of yin and yang, (in that again I had more yang), hence the inflammation. Her advice to me was to eat less spicy food, avoid sugars, and have more bitter herbs in my diet, as well as continuing the treatments I was getting from her in acupuncture, cupping, and massage.

The National Eczema Associate interviewed Dr. Xiu-Min Li (a Professor of Pediatrics in the Division of Pediatric Allergy and Immunology at the Icahn School of Medicine at Mount Sinai) who studies asthma and allergies (including AD) and went on to explain about traditional Chinese medicine and how it fits into the treatment of eczema. The article provides more insight into how TCM is starting to be incorporating into mainstream western medicine, with the goal of having an alternative to use before topical steroids. It would seem that many people currently turn to try traditional Chinese medicine when standard western medicine practices of topical/oral steroids and other topical medications don’t do the trick.

When I was doing my yoga teacher training a while back they talked about chakras. Chakras are energetic points of the subtle body and there are 7 of them that line the spinal column, and they each are meant to represent a basic level of human consciousness. According to what I learned during the training, when the third chakra (Manipura) is unbalanced, one can expect to see eczema and other stress-related skin conditions. This may be because the third chakra is connected to the detox related organs (like the liver) as well as the abdominals, obliques, etc.

Nutrition based in the Ayurvedic ideology talks about balancing the Pitta dosa (doshas are energies that control how we act, think, move, etc), and to do that they advise avoiding eggs, wheat, milk, nightshades, spicy foods, corn, shellfish, and overly sugary foods. Eczema is seen to be more of an excess of Pitta dosha, or more fire, hence trying to eliminate inflammatory foods.

Here’s an anecdotal story published by the National Eczema Association a while back about a family that turned to Ayurveda when the western medicine wasn’t helping their daughter’s eczema.

In regards to modern western medicine practices, a few comparison points are developing that reflect the more holistic ideals in the ideologies mentioned above. For example, added sugar is more or less nationally seen as being inflammatory, and many doctors will caution against having a diet that includes too much of it. There are also more practices such as taking bleach baths to help reduce infection risk and other treatments that can be done at home without a prescription that a western doctor will recommend now. And the recommendations around lotions and moisturizers (over the counter) are more prevalent, though the brands which are suggested still vary. Light therapy/phototherapy is also recommended to help increase vitamin D exposure, and more and more doctors are also advising getting moving more to help with healing, as well as different solutions to try at night to help with sleep- from stress relieving techniques like meditation or taking a bath at night, to antihistamines.

I personally however, have not yet had a doctor who engaged me in a conversation that got more specifically into nutrition (minus not eating a lot of sugar or junk food). I am not sure if it is out of their scope of practice, but it has not come up in 26 years of seeing doctors, which surprises me. Many doctors, as far as I can tell, still think eczema is not really related to food, but as I do have food allergies I was born with, I would probably be a prime candidate to test for new allergies. The rub there is that generally doctors will prescribe getting a patch test done- but you have to have cleared up skin for the test results to be more or less accurate, and you can’t be on steroids at the time (and I haven’t had clear enough skin in about 3 years).

There is also the holistic medicine movement we see that is not specifically tied to any of the above ideologies. It includes more of western herbalism, often crossed with different nutrition changes and protocols, like the autoimmune protocol, or the elimination diet, or other variations to help with what is called the “leaky gut” syndrome. There are tons of resources from bloggers, nutritionists, doctors, etc about how to go about a nutritional change to heal whatever ailments you are undergoing with food, and I’ve also noticed a lot of sufferers of eczema have gone into nutrition after having success controlling their conditions with their dietary changes (one example being Prime Physique Nutrition). There are also movements to changing the whole lifestyle to be more holistic (like making your own cleaning products as well as skin creams, moisturizers, body wash products. A lot of this new movement is grounded in taking control of your health, often after having tried working with doctors in modern western practices for long periods of time unsuccessfully.

A health resurgence in America has been in herbalism. Some famous members of the community include Rosemary Gladstar (author of Herbal Healing for Women), Susan Weed (author of Wise Woman Herbal for the Childbearing Year), Aviva Romm, Mark Blumenthal (founder of the American Botanical Council), Christopher Hobbs, and many, many others. Of note, I am usually deep into researching about women’s health, hence the references above. Gladstar does have a book on men’s health called Herbal Healing for Men.

From Gladstar’s book Herbal Recipes for Vibrant Health (which I own) she briefly talks about her general advice as an herbalist for how women can keep balance in the bodies by doing “good living practices”, which she notes as having proper nutrition, ample enough rest, joyful exercise, self connection, and tonic herbs. Delving deeper into nutrition she says to eat foods close to their natural states (which also means eat what grows seasonally), pay attention to how you feel while eating and afterwards, eat organic when you can, and eat  alkalizing foods. She notes about the latter that a lot of the disorders women have thrive in acidic conditions (aka when we eat too many sweets and carbs).

Personally, I have found relief from the most extreme symptoms by modifying my diet (I usually avoid eating wheat products and sugar because I tend to over consume foods containing them), and by using products approved by the NEA that avoid parabens, alcohol, and other chemicals that can be irritants for people with eczema. Acupuncture did seem to help- though I can’t say it was in isolation, since I did get massaged each time (which is also known for helping eczema). I tend to only bathe in a diluted bleach bath when I feel like my skin is getting close to infection (not sure how to explain how I know when that point is), otherwise this winter I did take a lot of baths with either apple cider vinegar (works similarly to bleach) or epsom salt (tends to calm me down and works well for helping me get through the dry out phase of TSW faster). I generally avoid using topical steroids when I can because I have gone through withdrawals before, and because I don’t like the reliance on something that doesn’t fix my issue (usually starting on steroids means I have to stay on them because I flare back up as soon as I start a taper).

All in all it does feel like there are more overlaps occurring over time in these differing ideologies, and we are seeing them sort of blend together in effort to figure out how to deal with chronic non-fatal diseases such as eczema. Whether or not they work still mostly seems to comes down to a person-by-person basis.

 

REFERENCES

“Ayurvedic Medicine and Eczema.” National Eczema Association, https://nationaleczema.org/ayurvedic-medicine-eczema/. Accessed 14 May 2018.

Berzin, Robin. “The Simple Elimination Diet that Could Change Your Life Forever.” Mind Body Green, https://www.mindbodygreen.com/0-12540/the-simple-elimination-diet-that-could-change-your-life-forever.html. Accessed 14 May 2018.

“The Effects of Traditional Chinese Medicine on Eczema.” Pacific College of Oriental Medicine, https://www.pacificcollege.edu/news/blog/2016/08/19/effects-traditional-chinese-medicine-eczema. Accessed 14 May 2018.

Ehrlich, Henry. “Traditional Chinese Medicine and Eczema: An Interview with Xiu-Min Li, M.D.” National Eczema Association, https://nationaleczema.org/traditional-chinese-medicine-and-eczema/. Accessed 14 May 2018.

Gottfried, Sara “Is the Autoimmune Protocol Necessary?” Sara Gottfried MD, https://www.saragottfriedmd.com/is-the-autoimmune-protocol-necessary/. Accessed 14 May 2018.

“The Three Doshas: The Keys to Your Individual Nature.” Eat Taste Heal, http://www.eattasteheal.com/ayurveda101/eth_bodytypes.htm. Accessed 14 May 2018.

“Yoga for Skin Diseases”, Yoga India, http://yoga-india.net/wp-content/uploads/2014/04/Yoga-for-Skin-Diseases-Anna-Mayer.pdf. Accessed 14 May 2018.

 

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my travel wishlist

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As the movement of creating more open dialogue around living with eczema grows, more and more events and opportunities are flourishing to help spread the word too.

My top 5 choices of places/events/conferences/camps/programs I would want to attend include:

  • Eczema Expo: Created by the National Eczema Association, this event brings together patients, caregivers, medical professionals, and product makers all to talk and connect over eczema. They even give you an idea of what the trip is like here. It just seems like a Renaissance Faire for sufferers of eczema and I’d love to go next year (hopefully it’s in Maryland or Massachusetts one year though!).

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  • Camp Wonder: This is an amazing program run by the Children’s Skin Disease Foundation that allows children to experience camp despite their skin conditions. I would love to be a counselor one day!

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  • Avène Hydrotherapy Center: First of all, this center is in the south of France, which is a beautiful land I long to re-visit. The spring supposedly was discovered to have healing properties when a Marquis’ horse was cured of pruritus after a few swims.  In time a hydrotherapy center and dermatological lab were built there, and so far, the testimonials of people getting treated there are beyond promising. Plus, like I said before, south of France. Be still my heart. Note: Avène also has US product lines now.

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  • Hannan-Chuo Hospital – A hospital in Japan thats dermatology department is run by Dr. Sato, who does a lot of research and treating of topical steroid withdrawal. You check in as a patient for a few months, and come out cured apparently. Unfortunately his blog is only in Japanese, but I’ll link it here for you multilingual individuals).
  • The Dead Sea – I hear its mud/water has some amazing healing properties due to its salts. It seems like many companies have turned the mud/water into packable salts for medicinal cosmetic lines, for example making bath soaks and other products, but I would love to be able to go there one day and just roll around for myself in the sea.

Other random events and classes that would pique my interest if I came across them and make me want to up and travel would be:

  • yoga retreats for skin sufferers
  • skin herbal remedy classes
  • book chats by writers with eczema
  • eczema in the arts conventions (I’m thinking like a comic con for skin!)
  • eczema spas (which I liken to Korean spas in my head)