Happy late Thanksgiving!! Though I thought about doing a post earlier in the day, I preferred to spend the time loafing around with some of my loved ones, so instead you’ll have to contend with me rambling on about what I’m thankful for during these last few minutes of the day.
First off, what I am most thankful for is my family and friends (who are essentially non-blood family). I love their colorful personalities and wouldn’t turn back the clock and try to change any moment in my life if it was at the risk of not having all my people here in my life. Now with that clarified, it’s onto explaining the title of the post.
Though it is currently driving me to take a daily bleach baths and use antihistamines, in some ways I do find myself thankful for having had to experience eczema. That statement alone may seem crazy given how much my skin drives me nuts, but not as mich when I de-focus my minute experiences and look deeper as to where my eczema journey as a whole is leading me.
Because in actuality what it has led to is me here in this moment thinking long-term about:
what plan of action to take next with my skin (when I’m done breastfeeding Fi)
if Jake and I will want another biological baby one day (a thought we ponder given that many newer treatments that target genes and whatnot have not been tested for long term effects), and
on all manner of futuristic positivity (like “this flare will pass”, “I can use this time to really focus on writing and on building up my women’s health knowledge for future career directions”).
I continue to find myself thirsty for knowledge, and subsequently scouring the world for new research studies done, as well as comparing and contrasting the results to better inform myself about options available, which I then use to create a skin plan (post on that coming soon).
But what in particular am I thankful for that eczema has “given” me? Primarily four things:
Perspective. I have not only learned to be more aware when all systems are go and my skin is more functional, but also that I can understand the limits of various aspects of medicine, understand the desire of people to offer their suggestions for alleviation, and understand that I may never know my specific causes or triggers but I have to learn to deal regardless.
Resilience. This has developed from having to fight for new normalcy without seeing the finish line of my efforts, as well as from having to learn to deal with visibly not looking normal but not always being able to hide away until I feel better.
Flexibility (of mind). I have been forced to change my approaches and my attitude around living with a disease that is still being researched and has no known cause, and
Bravery. I’ve been provoked to be seek out ways to help spread my experience and open up about my life via a medium I always wanted to pursue but was too afraid to previously.
This has been a challenging and weird journey, and continues to be so, but I am getting through as best as I can and finding new side quests along the way that almost make it feel worth it. Speaking of side quests, that reminds me of this meme:
What about eczema or your own battles are you thankful for today (or any day)?
Yesterday was my 27th birthday. Yes, I know it’s not my eleventy-first birthday or anything, but I am going to impart my own bit of wisdom from my meager years of life. Also from November 1st through New Years is Tolkien season for Jake and I, so expect a lot of references.
In these 27 years I have often heard the question “have you tried…?” in regards to moisturizers and supplements and all manner of things that one might think could help me with my eczema. While all good-intended, I think there needs to be a narrowing of the question so that it is focused, and therefore more easily answered.
What I mean by that is, when someone asks, for example: “hey, I noticed your skin; have you tried using coconut oil on it?”, a potential answer on my (or any eczema-living human’s) end could be “have I used coconut oil for what purpose?”
That first clarification requires the questioner to expound upon their thoughts. Are they asking because my skin is dry? Because it’s red? Because it’s itchy? Because they think they have an idea to balance out my skin microbiome and kill potential S. aureus overgrowths? It lets the question receiver have a context to delve into to make the initial question into a conversation.
One misconception about eczema is that it’s just dry skin. If it was just dry skin, yes, using virtually any (nonalcohol-based) product probably would help alleviate the problem. However, eczema is more than its visible crocodilian facsimile. It is an autoimmune disorder, meaning there’s a underlying cause for the external appearance, and so though you can help the condition by addressing the skin issues, the idea of there being a blanket solution in the form of a single moisturizer ends up feeling a bit naive and potentially frustrating.
So a gentler way to education about the various aspects of living with eczema is to require the questioner to be more concise. If they are thinking “oh your skin is so dry… you should try (insert moisturizer here) to help” then we can get somewhere because we can be like “yes that may help the dryness but I also suffer from other symptoms of eczema like skin sensitivity, and so I can’t use (insert moisturizer here) because my skin reacts poorly to (insert an ingredient)” or answers of that nature.
If someone asks if you’ve tried a product because of your skin’s redness/inflammation, you can respond in kind with “no, I haven’t. How does this product reduce inflammation?” and learn something new. Or you might have the opportunity to respond with “no, I haven’t tried it but I’m working on reducing inflammation via diet right now, eliminating sugar and whatnot and reducing stress”.
In a nutshell, if we can get the questioner to be more precise with why they are recommending the moisturizer (or whatever product type) for, then we have a chance to have a deeper conversation about what we’ve tried and our logic for why we tried it, and also increase everyone’s health literacy, including our own. And you know me and my love of increasing health literacy.
So speaking of health literacy, here’s a list of common eczema symptoms that can be inserted into the question receiver’s responses to help figure out what the questioner is trying to address:
itch (of course)
bumps/acne (often due to scratching)
excessive palmar lines (a fortune-teller’s nightmare) indicating a lack of filaggrin protein
weeping (usually from the open sores)
infection risk (again from scratching, but also just from having a compromised skin barrier)
And with that short post out of my head, I’m now off to enjoy my birthday week (as I spent the actual birthday day driving in the car 8ish hours to visit my parents).
Catch me off blasting my parent’s retro speakers and dancing around the house like:
And/or probably heading out to enjoy yet another of the Harry Potter world movies, Fantastic Beasts: The Crimes of Grindelwald. Can I just say how much I love that they come out around my birthday time, and have been since I was in second grade?
I’ll be the one sitting in the theater all giddy like:
I remember the reoccurring theme in the French movie Amélie when the narrator tells us what each of the characters likes and dislikes. Because the protagonist Amélie grew up with no friends, she was said to have learned to cultivate an appreciation for the finer things in life, like collecting smooth stones for skipping, sliding her fingers into large burlap sacks of dried beans, and cracking freshly made crème brulée.
Well I too have devised my own version of weirdly satisfying simple pleasures for one living with eczema that I will share with you all so you can all be tantalized by these delicious (and mostly improbable) thoughts. Sorry if some of them are gross; I have a weird mind.
And so, without further ado, my current running list of cultivated simple eczema pleasures:
Dipping eczema flaky feet into those ponds of fish that lightly nibble dead skin.
Getting Elmer’s white glue all over the top of the hands and then pulling off the dried result (like we did as kids to our palms), and watching the dead skin pieces go with it.
Getting a Korean exfoliation skin massage and watching the bits of skin slew off (if this didn’t entail probably wrecking eczema-afflicted skin).
Having a lint roller for dead skin that can just roll the excess skin away.
Going into a mud bath equivalent of what was in the movie Spirited Away, and coming out all silky smooth as the mud deeply moisturized the skin cracks.
Then I have ideas for all these even more so crazy impossible scenarios, like a skin cheese peeler that only goes as deep as the dead cells and doesn’t hurt any new skin growth, and other weird things like that.
Clearly I’m feeling flaky these days. I’ve started to identify the fall season time as being when I identify most with a bear. I alternate between just wanting to roll up in blankets and hibernate for months and wanting to emerge to rub my itchy body on trees.
When I haven’t had a real flare in a while (flare in my case depicted by aggressive heating up randomly due to pressure or any prolonged skin contact, or when my skin develops a hot red undertone color), its timely arrival always knocks me down a few notches. Sometimes I liken my eczema to being some kind of monster that continues to hunt me movie after movie sequel, or I hear its irritating voice cutting through a crowd. This most recent flare comes across like a socially unaware drunk, and I like to lighten my mood by pretending it would act like Sheldon from The Big Bang Theory:
Ugh. At any rate, I’m taking it day by day, and the good news is when I do fall asleep (and Fiona doesn’t wake me up) I can really sleep, thankfully. It’s strange, I don’t really remember what it’s like to naturally wake up anymore. In the immortal words of country singer Thomas Rhett, “ain’t it funny how life changes”.
But, when I am first in bed, sandwiched between the time before I can succumb to the depths of the dream world and the time before Fi wakes me up again, my head is filled with thoughts that I have to process.
It’s during this time that I find that I tend to blame myself for my flares. I’ll think back to things I ate and worriedly wonder if it was sunflower oil in the crackers causing me to develop a sensitivity to my moisturizers that have sunflower in them. Or I’ll berade myself because I had the fruit covered in dark chocolate. I’ll panic that I’m secretly allergic (but not anaphylaxically) to almonds and just never knew, or that it’s because I had too many calories and ate too many legumes and so I slugged my digestive system down and now I am paying the price. Or maybe I had a Polar Seltzer and who knows what those natural flavors are made of! Or I had a probiotic drink and maybe it was the wrong kind of probiotics. What if it was the coconut!? At any rate, the result is always the same, fearing food and feeling blue about myself.
This type of stress gets compounded by my clingy eczema, as it lingers over me constantly reminding me that there is a cause to each flare-up, so what was it this time? I also find that I scratch my hands a lot more at night from a combination of the heating up moments laying under the blankets along with the constant drying out (and literally nothing keeps the moisture in at this stage!).
What I’ve learned is that when I get super tired in the middle of the night, as I’m pawing away at my paws, I tend to have thoughts zoom around my head that make no sense but seem so logical in the moment. If I just scratch here then you know that assignment will get done. And random nonsensical thoughts like that. I honestly have no idea what I’m talking about when I wake up in the morning and looking at my picked scabs and scratch marks.
When I do have some skin healing downtime, I like to map out how I’ll treat myself later. I know it’s a pretty divisive option, but I love tattoos. I think there is something about knowing my skin gets all wrinkly and cracked and flaky that makes me not have those “well imagine how bad it will look when you are old and wrinkly” thoughts. I’m already wrinkly, and age has nothing to do with it. Me and this cat are basically identical:
At any rate, I like to find cleared spots and think about what kind of tattoo I would get there. Lately I’ve been thinking about lotuses. They have a lot of symbolism for women’s health which I really like. That and I really want to get a tattoo of a open book at some point. Generally I like dreaming this up a lot more than I actually execute action, but who knows what will happen after this flare passes.
Happy belated Halloween! Yes, I know I’m a day late but I’m including other holidays to pad my belated holiday post.
I started writing this at 3am on Halloween, and boy was I feeling it. I’d say I was doing about as well as an old cracking, stiff black leather couch on a dry heat kind of day when hot human flesh sprawls on top it (aka I was both drying out and exuding an uncomfortable amount of heat). To compound that, Fi kept waking up around every 2 hours, and it takes me at least 15-45 minutes to go back to sleep after she’s cared for, so deep healing sleep was not in my repertoire the other night, folks.
And so, instead of sleeping, I got all ready to chat about my once favorite holiday, Halloween. Did I mention how I absolutely love to dress up (or did before my skin started raging against the machine that is my body)? Anyway, I truly believe this day (or days) of year is (are) incredibly magical. For one, there are so many different cultural holidays, from our Halloween roots of Samhain, to All Saints’ Day to Latin America’s Día de los Muertos, to harvest festivals, to Guy Fawkes Day, etc.
Let’s start with the American classic holiday, Halloween. We all know how the holiday is celebrated today, at least in North America (though I’ve got a fun example of how it’s changing in an eczema-friendly direction that I’ll talk about later in the post), so for now let’s skip back a few decades to talk about Halloween’s origins.
Here’s the shortened history. Halloween had its roots from the Celtic festival Samhain, a celebration of the end of summer and the start of the harvest season. Because of the weather changes from summer to winter, it was also believed that this was a time when the worlds of the living and the death overlapped, and spirits could return to earth. To celebrate, the Celtic priests (Druids) made large bonfires where people brought sacrifices from their farm production, and they dressed up in animal skins.When the Roman Empire conquered the Celtic territory, they introduced other festivals that blended into our current holiday lore, such as commemorating the dead and festivals of fruit and trees (one which may have inspired the oldtradition of bobbing for apples).The blending of Christianity into the Celtic territories led to holidays like All Souls’ Day, which was like Samhain but people dressed up as angels, devils, and saints, and eventually All Saints Day was moved to November 1st and Samhain (which became All Hallows Eve, and then Halloween) became the night before or October 31st. Halloween in America started out more similarly to the harvest festivals, then formed into an amalgam of folklore, ghost stories, mischief, and asking for treats. Over time it was reformed to try to be more community-based with parties, and with treats being given out to avoid tricks becoming the norm. At some point costumes were encouraged, first as a way to deter roaming spirit from recognizing living people, and then it was more for fun as it was modernized to what we know it as today.
Speaking of modernizing, there’s a new version of Sabrina the Teenaged Witch redone as a Netflix original (called Chilling Adventures of Sabrina) that definitely takes a much darker take on the 90s sitcom. In it, Sabrina is a half-witch, half-mortal who is constantly taking on the patriarchy, which is particularly creative when the patriarchy in question is not always that of humanity. But that’s where I’ll stop just in case anyone is planning on watching it (noting that some of the themes and violence are not appropriate for young children).If I were to try to liken the show’s general theme to that of eczema, I’d say it would be that you should always feel free to fight to create your own space, your own identity, and your own world even when the options seem to be telling you that you have a limited amount of choice. I’d elaborate more but I’m trying not to give away too many thematic spoilers.
And as promised, here’s a fun eczema-friendly movement that’s developed. Called the Teal Pumpkin Project, it’s a movement that is in recognition of the growing amount of life-threatening food allergies. Pioneered by a mom named Becky Basalone from Tennessee in 2012, she painted a pumpkin teal to indicate that she would offer alternatives to candy on Halloween, as her son had anaphylaxis and she wanted to have a way for him to still enjoy the holiday without worry. The Food Allergy Research and Education organization picked up the Teal Pumpkin Project and helped it gain country-wide recognition in 2014, encouraging people around the nation to put out these teal pumpkins to let families know that there are allergy-free (non-edible) treats available. So now, for those children out there that may be going through some sort of systematic inflammation disorder (be it food allergies, eczema, or something else), they also have a way to still partake in the festivities of All Hallow’s Eve. If you want to be involved, you can paint a pumpkin teal and put it outside your house, and then add your house to the teal pumpkin project map.
Now for Día de los Muertos (or Day of the Dead). This holiday has seen an increase in recognition in the states over the years (just look at movies such as Book of Life, or the newer Disney movie Coco). It entails a celebration of one’s deceased, honoring their lives by creating an ofrenda (or offerings) for them of food, flowers, colorful skeletons, and people don brightly colored clothing and have parades and music and festivities to celebrate their family. The belief (of which developed from a mix of Aztec culture and Catholicism) is that on the Day of the Dead one’s ancestors come back to visit on earth, but it is disrespectful to grieve for one’s deceased, so instead it is a day of reunion and remembrance and happiness.
And lastly we have Guy Fawkes Day. Many of you may be familiar with this holiday due to the 2006 movie V for Vendetta, that centers around this elusive date of November 5th (easily remembered by the ditty: “remember remember the 5th of November, the gunpowder treason and plot. I know of no reason why the gunpowder treason should ever be forgot.” The history behind this holiday was that under various monarchs in England, (but primarily under King James I’s rule), Catholics were persecuted, unable to marry, fined for refusing to attend non-Catholic services, etc. Various attempts to overthrow the ruling king were enacted but the most famous was that done by Guy Fawkes and company. Their plan was to use gunpowder to blow up parliament on November 5th, 1605. Somehow, a letter was delivered to parliament about the plot, and Fawkes was stopped November 4, and subsequently he and his team were sentenced to be drawn and quartered as punishment for high treason. Celebrations with bonfires started after the plot was revealed and November 5th became known as Guy Fawkes Day, (even spreading to America as Pope Day where people burned the Pope in effigy). Although America stopped celebrating their version, in Britain, Guy Fawkes Day entails (even today) bonfires, fireworks, parades, and of course, burning Fawkes in effigy. The holiday has taken a spin where Guy Fawkes is sometimes seen as a hero, a change which is attributed to the movie V for Vendetta, where V wears a Guy Fawkes mask as he attempts to topple a fascist government regime. Spoiler alert: in the movie, V goes on a last stand rampage to kill off the remaining “bad guys” and results in him sacrificing himself. While he is dying, he shares a “kiss” (put in quotes because the heroine, Evie, kisses his mask), and then he dies and she puts his body onto the train with all the explosives, that runs under parliament. Maybe if V had lived in this time period, instead of deciding to sacrifice himself he would have jumped into the bandwagon of #unhideECZEMA, but pioneered his own movement to be about unhiding burns, and then he could have removed the mask and gloves and found himself worthy of living a new life with Evie. But then there wouldn’t be a movie.
Speaking of movies, here’s a side note to end with (though it’s not family-friendly and it’s quite violent and whatnot): the movie Deadpool actually supports the idea really well of skin issues not being a big deal. Spoiler alert: Ryan Reynolds’ character Wade, aka Deadpool, becomes horribly disfigured from a mutant experiment and spends the first movie chasing after the psychopath doctor who did it to him to get the doctor to make him good-looking again before he is wiling to go back to see his beloved girlfriend/fiancée, Ness. When that plan ultimately fails and he is going to be forever scarred, he is still reunited with Ness and she is upset at him for wasting time away from her, but unfazed by his skin. The old adage holds true, love is goes deeper than skin deep.
And now here’s to me hoping my skin is cooler tonight and I can sleep.
Back in my physical therapy student life, we had guest speaker Pamela Unger come in to talk to use about the role of wound care in PT. Much of what we talked about I applied (in my head) to eczema and ways to help treat it for myself. I’ll share some of my thoughts below meshed in in italics with things I learned from Pamela, but note: these are ideas I came up with and are in no way necessarily endorsed or supported by research.
To begin, we need to know that wound healing normally has 3 phases: inflammation, proliferation, and remodeling. During all 3 phases there is vasodilation (aka the blood flow increases to help close up the wound).
The inflammation phase: As we with eczema have constant inflammation, this made me think maybe we are having trouble with this phase of wound healing in particular. During this phase, the wound works to regain balance of its cells, and also fights to prevent infection, the latter which interested me because people with eczema are generally more susceptible to staph and other skin infections. Is it because our systems start attacking our own good cells and not just the infectious bacteria?Cellularly during this phase, inflammatory mediators are released (so do people with eczema lack these mediators?) and various cells like macrophages/neutrophils consume the bacteria, but presumably less successfully if patients with eczema get staph frequently. The intended results of this phase are that the bacteria and other foreign materials are cleaned out of the wound, and that inflammation is controlled.
During the proliferation phase, the wound starts to fill in and close. Cells called fibroblasts start making collagen (collagen is an important building block for skin cells), the extracellular matrix (a molecular substance that supports the structure of cells) is made, and there is new development of blood vessels (called angiogenesis). The intended results of this phase are that new blood vessels are made, the template for new cells is made (call the scaffold), and re-epithelialization occurs (which means epithelial cells move to form a barrier between the environment and the wound).
During the remodeling phase, the scar is developing and maturing. Cellularly, the collagen fibers start to line up and the skin becomes stronger especially to tensile stress (being pulled/stretched). The intended result of this phase is that the collagen fibers cross over one another adding strength to the wound. The only aspect of this phase that I think ties to eczema is when individuals have healed eczema scars that itch more than open or unhealed areas, but that would mean something chemical is happening and I don’t know why scar tissue would itch more than the other parts of the skin. Though I suppose it could also be assumed that if during a topical steroid withdrawal, the skin becomes excessively wrinkly, it could be a problem with collagen production?
Now that we have the basics, we can talk about a chronic wound. I loosely decided that eczema is a chronic wound by this definition: a skin injury that fails to heal through the normal phases, in a normal amount of time.
A chronic wound can have one of two thickness classifications (usually applied to specific types of ulcers). The first is partial thickness, meaning the epidermis (or outer layer of skin) is broken, but the next layer (the dermis) may not be. A full thickness means the dermis is also broken as well as the fascia, and there may be a breakdown into the muscle/tendon/bone level. I believe generally eczema wounds are partial thickness, though I am sure there are some exceptions/particularly bad wounds that occur.
Generally wound healing can be stalled because of 4 main things:
1. a bacterial infection,
2. inadequate electrical potential (for we are beings of electricity! More on this and the idea of E-stim for eczema management in another post),
3. not having enough microcirculation (aka circulation of blood in the smallest vessels), or
4. too much pressure from interstitial edema (or swelling in between cell layers).
Other factors like age, nutrition, and topical/oral steroids also can slow healing. With nutrition, the biochemical aspects doctors check for wound care would be albumin, pre-albumin, hemoglobin, and hematocrit. They would also want to check that a person has enough protein, calories, and fluid in their diet. We know that when you have eczema, it is especially important to drink lots of fluid and have a balanced diet, but I am unsure if the four other biochemical factors have a correlation with eczema sufferers, though I would assume people with eczema would have decreased levels of albumin (because it’s a protein).
So how does one really maintain their skin health? Pamela’s big takeaways were to:
1. keep the skin clean and dry (a big reason we need to clean out the wound is because a biofilm (of bacteria) easily grows in a wound and blocks healing by messing up the chemicals needed to heal),
2. use warm water (not hot) on the skin (because hot water can cause us to have more water evaporation from our skin),
3. use daily hygiene techniques, and
For wound control, Dr. Unger broke it down to 4 steps.
1. Protect the wound surface. Think using gauze, bandaids, wet wraps, cotton clothing, etc. Wet wraps would also help keep in moisture. If excessive moisture, collagen can be useful for absorption (maybe that is why I was able to use a collagen night cream to heal my facial eczema when it was raw).
2. Control bacteria. She mentioned silver ions and slow-release iodine. I believe new eczema products are trying silver so another overlap may be indicated.
3. Control odor. Unclear if this is as application to eczema but she mentioned activated charcoal and I believe there are some eczema products that have charcoal (though I could be wrong).
4. Affect cells. She mentioned using collagen (though how it would apply to eczema wounds specifically, like if it should be orally taken or topically applied, I am not sure).
The last things Pamela mentioned in her wound care lecture that I thought tied well to eczema management were:
1. massage (it has been documented that massage can help eczema, though aggressive massage around a wound may impede blood flow and slow healing, rather than help. So if a person suffering from eczema has lots of open wounds, massage may be more detrimental than useful),
2. avoiding excessive pressure (as excessive pressure or friction can cause wounds, it stands to reason that slumping in a seat, or staying in one position for too long doesn’t help the skin of people with eczema. Getting up and moving seems to have more importance than just general health, mood boosts, and circulation!), and
3. keeping the eczema wounds moist rather than letting them dry out (in the past people believed wounds needed to air out and be dry, but Pamela explained this makes it harder for the wound to heal because it needs a level of fluid movement. I believe dermatologists would support this as I have heard /read about them saying that dry skin leads to itching, and scratching the itch is what causes the rashes).
So could a physical therapist treat eczema? Like the answer I got through most of my physical therapy graduate classes: it depends.