Tonight the wind is whipping itself into a frenzy. Maybe there’s a storm, or maybe the tail end remnants of someone else’s storm are wagging on by.
I could get out of bed to peer into the darkness. But who knows what I’ll see there.
Sometimes familiar sounds assault my ears, out of place because I think them to be impersonations of their true selves. The undertone of the vibrations of a passing train, the shudder of corrugated metal, the warble of large plastic garbage bins fending for their own in the facsimile storm.
Sometimes the wind redirects and smacks right into my bedroom window, like waves of air splashing against up their own beach. And sometimes it sounds like the light drumming of someone tapping to be invited inside. Either way, I check it not.
The ever present low roar of the wild wind makes me think I am on a boat, lost at sea, but a sea ofair, like some kind of fantastical adventure that just waits outside my window.
The broiling wind continues to rush as though gushing from an undetermined source after a few well-aimed pickaxe swings into the stony ground. Only this flow is not stopping. There is no felled dam that will eventually be emptied.
Much like it started, the wind will dry up without a clear end, and I will forget it happened at all as the memory corrugates with other past memories of late night un-stormy storms.
Jake and I had been talking when he said something that made my brain go “OH!” and basically re-wired years of misguided searching. What he said to me was, “I think you are confusing community with suburbia. You grew up in a suburb, but you had a community… most of the time suburbia is not synonymous with community.”
Now that may seem obvious to you readers, but for me it was an eye opening moment. For years I have waxed poetic about how and where I grew up, equating the two in my mind and constantly yearning to find that again as an adult, in a new place. We actually currently live in a suburb (though a weird one because it acts like a seceded city from a larger nearby one. It also gets terrible amounts of run-off traffic that only a coastal town abutted by a huge city can get).
When Jake said that to me it hit me that that was what is missing from here versus where I grew up. I lived in the same place from ages 11-23ish and got to re-invent my life in my community over and over again. I had friends in the area sure, but even after many of them came and went I had their parents, my neighbors, new co-workers with whom often shared people in common who we knew, random encounters with townsfolk, etc. The life felt interwoven and connected despite me spreading my wings in multiple literal towns.
So while I was taking a bath today I was thinking about my community and what it takes to have one and why I don’t have one here. Some of it is definitely a product of time. I have only lived in this town for 10 months now, most of which I was pregnant for or had just given birth, and for all of it I was sleep deprived and battling topical steroid withdrawal. So yes, I haven’t been spreading my roots as aggressively as I could have. I started out strong: when I moved here, I baked cookies and delivered them to neighbors’ houses with hand-sketched phoenixes as a weird get-to-know-you thing; and then I also made it a point to meet all the librarians during multiple library visits, and also explored the farmers market on occasion. But then between my physical condition and my pre-to-post baby phase, I grew tired.
That and was hard to establish a deep connection when one is in different stages of life. Our neighbors are mostly all parents with kids who are between 9-19 years old, and the parents themselves are probably all in their 40s (I’m guessing). Many of the parents include one of the couple who is a state native, and if not born-and-bred in this town, they were probably born in one within a 15 mile radius, and thus lots of them have family around. Many of them are working, or randomly gone a lot of the time so it’s always a chance encounter when I do see them.
It’s also just a different type of town than what I grew up in. This is car community. I’ve tried to make it walkable to the extent that I love, but the sidewalks end randomly and the roads are hilly and windy, and people tend to speed aggressively. It was fine when it was just me on foot, but with Fiona in her stroller I just don’t feel as comfortable.
But how does this relate to a spider web? And why am I thinking about spiders when I have such a phobia of them? Well, I’ve been reading a lot of southern-set books lately (first ‘Midnight in the Garden of Good and Evil’ by John Berendt and most recently ‘The Prince of Tides’ by Pat Convoy), and the one thing they have in common is a deep-seeded love for their environment. They talk about the flora and the fauna and the smells and the colors as an important part of the experience around the stories they weave.
In The Prince of Tides (which is fiction), there is a background story within the story that talks about how black widow spiders helped save the family from a murderous intruder (because the children released the spiders all over said intruder) and how afterwards the family never killed another spider again, and it made me think about spiders and my own fear of them. Then when Jake and I were discussing community, I thought to myself, “hey, a community is kind of like a web” and that led to this post.
A community is like a web. And by this I mean that the ideas behind a web almost fully apply (if taken with creative liberties).
A web is built slowly over time,
One thin gossamer strand at a time
With the determination of knowing what it should look like
But innately, without blueprint,
With knowledge of its fragility
And understanding of the need for constant adjustment
As bugs and debris and miscellaneous items rend it broken.
It is made over an existing space
Be it flora, or the existing corners of a barn
Or something in-between
The web does not exist without some sort of baseline structure
But it can be recreated over and over again in new places
As need demands, thread by thread
Again and again as it suits the needs of its creators
Anyway, that’s where my mind was roaming today. I think it’s also why I yearn to move back to my parents’ area. I found a community I liked and now I just want to return to it so Fiona can experience it too. Maybe that’s lazy, but I make no excuses for it.
The other day I watched one of those Netflix originals movies called Dumplin’ (based off a book of the same name by Julie Murphy), and for some reason it just grew more and more on me and I actually ended up watching it twice in a row (the second time because I wanted to share it with Jake). I’d say I was drawn to the film because it depicted a coming-of-age story and body positivity in a better, more realistic light. Rather than stick to tropes about the misunderstood teenager or underappreciated mom, the story came into its own by the protagonist teen learning to accept her reality (being overweight) and not let her own misconceptions color or limit her life experience. I know that’s vague but I am attempting to avoid spoilers for anyone interested in watching it.
A majority of the movie characters also fan-girl over Dolly Parton and use her songs and words as inspiration to live their best lives, such as:
“find out who you are and do it on purpose”
“you’ll never do a whole lot unless you’re brave enough to try”
among many others that pepper the movie with external applicability and general charm. The whole point of the movie, besides family bonding, was to show the importance of developing confidence and trust in who you are and those in your life who support you, even if you don’t understand how or why.
I feel that this resonates so strongly with living with eczema. It can be a constant battle to accept yourself in this skin, and not assume everyone is silently judging you or that you don’t belong. However, it is also crucial that such feelings don’t stop you from being genuine and always trying, even if it feels uncomfortable. And as for those supporting you, you have to be able to accept that they see you beyond your skin, because the skin you’re in doesn’t define who you are.
I personally don’t know much about Dolly Parton, but after watching this movie full of her quotes and songs, I am inspired to learn more about her and listen to her music, especially if I’m ever feeling down. Dolly Parton fans feel free to throw out recommendations.
I also inexplicably wondered what it would be like to have regional eczema balls (the dance kind), that allow those living with eczema to let their metaphorical hair down and mix and mingle in a somewhat formal setting to create their own sense of magical community and touch of the unexpected. Actually I do know how that got into my head. I had been talking with a friend who got into dancing and it just felt like something that could be a lot of fun. Just imagine if you had a room full of understanding people who get the red-skinned, elephant-wrinkled, constant itch and snowflake life, and so they can all dance despite it, no worries, just silliness.
I know usually I have this whole elaborate set-up of a theme that then ties back to eczema or life with eczema, but today I am just winging it. Today I feel like chatting about all the little random things that have been going on since it’s a new month and the winter season is basically in full effect here as it hit below 20 degrees Fahrenheit the other day!
I guess the first big change to announce is that we are moving! We’ve put our home on the market and we are just waiting to see who bites before we take a chance and move to try living nearer to Jake’s work (re: into the city). This will be the first time I live in a city proper, and though we don’t plan to buy, and don’t plan to live there too long, it feels like it’ll be an adventure of its own.
Though it seems like an impromptu change, we’ve been talking about it for a while and we realize it will help improve our health in a number of ways. One, the commute to Jake’s work is a nightmare (almost 2 hours one way now), and the traffic even in our town, which is a fair distance from the major city, almost always is brutal, even just trying to drive to our grocery store. Today we started looking into studies about how commutes can impact quality of life. Multiple studies indicate that longer commutes increase adipose tissue, blood pressure, and more, and not just because of driving entailing sitting for a long time. This older NPR article was a fun read about how to be happy where you live, as well as how humans can get used to all kinds of factors: cold weather, higher taxes, etc, all much more easily than they can adjust to traffic.
Then another reason for our desire to move besides the commute is that our neighborhood is lovely, but it is a bit difficult to navigate by foot, which tends to be my preferred mode of transportation. Trying to walk around the neighborhood with Fiona means me wandering along quite a few hilly roads with no sidewalks and drivers that often zoom by blindly unaware of my approach, or me getting my choice of which dead-end road I want to traverse and then reverse back up, and me encountering few neighbors because the local stores and community areas are QUITE a hike for me to tote a baby to right now, especially with the temperature drop. Not being able to roam is definitely making me into a hermit and decreasing my NEAR and exposure to outdoor weather.
So in short we are moving (or rather, prepped and ready to move as soon as we close the house sale). When we do close, Fiona will be driving us to our new place as she has been taking lessons with dad:
We’ve also been trying to create other ways to help improve our health including getting into more herbs and pickled things. We are trying to work on increasing our micronutrients in our diet, and my foray into herbs (beyond the seasonings we put on food already) has started with tea. I came across this recipe from Commonwealth Herbs for gut health and I am enjoying it immensity. You drink a quart a day, and each quart has 2 tablespoons of the herbal mix. I followed the basic mix, which includes chamomile, ginger, fennel, licorice, plantain calendula, and peppermint.
I also have been getting into using this frother stick thing that Jake got me that makes me instant “latte” foam. My newest “milk” that I’m experimenting with for my lattes is hemp milk and I love it. It’s got a weird aroma that reminds me of marshmallows in hot chocolate and those Vienna brand finger cookies from my Poppop’s house back in the day. On that note I also think it would be delicious on top of some hot chocolate… but I’ll try that another day.
Speaking of tea, I got that mug at Marshall’s the other day (because I’m trying to make a collection of eclectic mugs), among other things- things mostly gnome-themed. I do love me some gnomes. I’ve been making this joke a lot, but it’s starting to look like Gnomemas in our house. We got a standing gnome to guard the front door that is currently taller than Fiona, a gnome-themed blanket for me to use in our TV room when I get chilled, and this lovely gnome couch pillow (shown below). Not to mention my personal travel gnome, Schmebulon Junior (I’ll be impressed if anyone knows what that name is in reference to). All in all I’m feeling festive!
Also I got Jake into the spirit, so he co-decided to get this runner for our dining room table, along with a little tree plant, and I got this weird looking wooden polar bear.
And of course we’ve started amassing presents. Though to be honest, most of them are belated birthday presents for my sister who I haven’t seen since the summer!!
We have yet to get the tree though and we still have yet to put up lights, but we are getting there!! Projects for the weekend.
Speaking of gifts and “tis the season”… I am now the proud owner of The Lord of the Rings all-in-one trilogy book. Jake and I are still working on developing our ‘winter season is Tolkien season’ tradition and this is starting it off! I am quite excited though I do still have 7 library books to finish off before I can delve into only Tolkien.
And lastly, the other day when we were out and about during an our open house, my family trio went to Salem and explored. My eyes fell upon this little guy and it was love at first sight:
It’s a heating/cooling pad that can be put in the microwave or freezer respectively to get it the desired temperature. I am always cold so I love warming him up and throwing him over my neck. Ahh, it doesn’t get much better. And the fact that it’s shaped like a sheep is just another plus as I love sheep things as much as I love gnomes.
But how does it all relate back to eczema? Well, this time of the year can be incredible rough to the lay-skin person (my word for a person with intact epidermal layers). It’s getting dark around 4pm, there is less sunlight overall so we all can become vitamin D deficit more easily, the cold makes all skin dryer and heating systems do the same, and the holidays are spread out enough that everyone feels like we are just sprinting to make it to the next one. Now add that disastrous skin barrier and generally a weakened immune system when people tend to spread sicknesses around the most, and we have a recipe for months of frustration. That’s where the winter cheer and enjoying the little things really becomes so important. I have been trying to throw myself into the little warming moments like seeing my little one in an elf hat, or getting a heating pad in the shape of a sheep, or making challenges with my husband to do 30 consecutive days of walking outside together even if it’s freezing outside. Obviously I can’t control the temperature of all buildings or always keep myself warm, so instead it becomes important to focus on the fun: those day to day minute tokens that can create a lovely atmosphere all around, and buffer the time in between when we can go spend the holidays with our family. The overarching goal is de-stressing via just enjoying life, and embracing seasonality and festivities personally really helps.
If you are feeling winter weather blues, I advise giving it a go. Dress your house up with small things that embrace your chosen beliefs or just the weather (like burning pine and fir candles or decorating with snowmen and colors like blue and white, evergreen and touches of bright red. Drink hot beverages of choice (tea, hot cocoa, mulled wines, hot toddies), and make time to spend moments with people you love. Get outside to feel the bitter chill bite your cheeks, just to make coming back inside feel so nice as you thaw again. Read a seasonal book, watch a seasonal movie, or listen to some seasonal music, while ensconced in thick and warm home blankets. Take warm baths with whatever your choice of salts and scents are, garb yourself in colorful scarves and hats and mittens, and see how you feel. Make this time special and memorable and let me know if it makes winter and your skin feel a bit more bearable.
With everything that’s been going on, I completely forgot to note that it’s been a year since I’ve been off topical steroids!
It was about this time last year that I found out I was pregnant and thus decided to give up topical steroids cold turkey. I had read that using them during a pregnancy could result in developmental delays of a fetus (if using too strong a dose for too long, or over too large of skin surface area), so instead I decided to completely cut it all out. Long story short, my eczema has been complicated by topical steroid withdrawal since that point, like I’m on some sort of a topsy-turvy roller coaster ride.
In fact, last night I had to have Jake cut my wedding band off my finger because my finger got so swollen and neither ice nor lubricants helped bring swelling down or get the ring off respectively.
It was a sad and frustrating moment where I realized that despite all my perceived healing, I still cannot even wear any jewelry (minus my tragus piercing, which I think is only fine because it’s an area of the ear that has more cartilage than skin or nerve endings).
Necklaces, earrings, bracelets, everything else tends to bother my skin (or be scary to wear like in the case with the ring yesterday).
I’ve also been struggling with bouts of intense nighttime itching, which has resulted in me scratching myself open more, (even when wearing gloves) as I have less mental fortitude to prevent myself from doing so late at night. The worst I’ve done so far was on my leg the other day, which definitely warranted some wound care attention.
I remember as I scratched that I felt it start to weep but it was still so excruciatingly itchy, almost as bad as when I get hives, that I couldn’t stop.
So what’s a girl to do especially with the winter onset and the heater constantly running? Make a skin plan of course!
My current plan is as of now comprised of the following steps (in no particular order):
Get a new dermatologist (we’re moving soon) and make sure to request bloodwork and a skin prick test (the latter if my back can stay flare-free enough to do so)
Research about best emollients and supplements that include essential components for skin and skin healing (like ceramide and filaggrin) and confirm with new derm
Consult an herbalist to work in more herbs into my diet, bath, etc and to help address my sleep issues more naturally
Figure out more about the endocannabinoid system and what else helps it besides CBD oil since said oil is quite pricey
Take the dermatology technician certificate to get a better clinical understanding of dermatology and what doctors think (without having to go to med school and then through a dermatology residency)
Get myself moving more again. Brave the cold and go for more walks and seriously get back into intense yoga because it helps
Avoid all added sugars including honey and maple syrup until my inflammation has dissipated a bit more
Contemplate seeing a psychologist to address my excoriating disorder and stress issues
Fix my diet overall which includes following seasonality, eating a more diverse array of vegetables, and keeping track of what I eat too
Read more books on eczema including ones whose contents I am on the fence about
Learn more about newer treatments including dupixent and eucrisa
Get my life together enough that I can participate in calls in the online eczema community program I am involved with
There are probably more pieces of my plan that I’ve forgotten and a better step-wise way to present them but I’m too worn out to care right now.
Sometimes the constant skin drying out or the fear that what I ate is hurtng me, or the annoyance at having to adjust so many commonplace day-to-day activities like how my husband can touch me or how I can hold my baby really get to me. I can see why it’s so easy to turn to a medication that can quickly get rid of symptoms, yet for many of us, our skin conditions have become the result of such medications, which feels like a betrayal of the modern medicine world, like science has failed us.
I need to do a post on topical steroids soon, and how they work, and then read and talk about how the newer medicines on the market work and how they are faring. There is no miracle cure to illnesses and quick acting solutions can come with a price. It seems more and more important to show that there will be some level of struggle involved for those unlucky enough to be susceptible to this kind of condition.
A few weeks ago I finished a book called How Doctors Think by Jerome Groopman and oh boy do I have thoughts. First off I have to say that the book had its fair share of downer moments because it had a lot of cases of patients with cancer who struggled with doctors to find plans of care that extend their life just a bit more.
But other than that it was full of all kinds of information about different schools of thought that doctors employ to help their patients. Two specific ones it mentioned included the evidence-based and algorithm-based approaches.
With the evidence-based approach, the doctor relies on existing research, especially those that have a large amount of studies behind them. The issue with this approach is that doctors often default to using said heavily-backed solutions without inquiring or considering less numerously-backed ideas. This could become a problem, say if a new drug has tens of studies done on it, all sponsored and paid for by the company that produces the drug, while an alternative medicine or treatment may have great results but only a handful of studies supporting it, In that scenario, it’s almost more of a research field monopoly, rather that robust results that gives the drug the good reputation, causing the doctors to favorite it more. In relation to eczema, where these ideas can be applied is in understanding how to approach doctors in a way that doesn’t cause them to default to automatically prescribe topical steroids (the long standing, most heavily-researched atopic dermatitis prescription option) as the first line of action.
With the algorithm-style approach, the doctor can follow a flowchart style of logic that’s been proven relatively effective over time. Its basically like having a graph that has arrows from each option to a few subsequent options, like:
“Does the patient have X cluster of symptoms?
Yes = Prescribe drug A.
No = Run test 1.
Is test 1 positive?
Yes = Give drug B.
No = Run test 2.”
And so on, and so forth. The flaw with this approach is that it doesn’t allow the doctor to think outside the box, which Groopman argues can result in said doctor trying to fit a patient nicely into an existing “flowchart” result, even if there are some signs or symptoms that don’t quite match up with that diagnosis. This may be the case when someone has other co-morbidities too or when someone has common symptoms of two very different diseases (like this example of a woman who was using topical steroids and found out she had lymphoma). For this problem it can be useful to ask the doctor what are the best and worst case scenarios of diseases that fit the presentation of symptoms. Asking this can help a doctor think beyond their initial conclusion and more thoroughly work to rule-out other options.
Another significant point the author makes is that for doctors to really become better, they must remember their mistakes and use that vulnerability to inform their care. He gives examples of renowned doctors who literally have binderfuls of their mistakes that they reference to maintain humbleness and act as a forcing function to always push themselves to improve. This might be a more difficult conversation to have with your doctor as I imagine no doctor enjoys being asked, “so let’s talk about all the times you royally effed up with patients”.
One last subject the book addresses that I’ll bring up is the pressure doctors implicitly face when they accept any form of samples or gifts from big pharma companies. It’s not that all pharma-marketed medicines are bad, but that you want your doctors’ reasons for choosing a specific product to come from no other influence than that they believe it works and have seen that said products have good efficacy. This is why it can be hard to decide whether or not to use samples a doctor gives you as you don’t know that they really think it works or if they just happen to have them around from a sales pitch. A question to ask in this case might be “have you seen a lot of positive outcomes from use of X product?” Another way to foray into this territory with a doctor is to ask about long-term results, as well as what are any known side effects (this could apply to eczema-related products like topical steroids to non-steroidal creams or biologics or brand-name moisturizers). If something sounds too good to be true, it’s probably fairly new to the market and so the longevity of effects haven’t been tested. A further question to ask is if there are any cheaper off-brand equivalents because those usually only come out after something has been on the market for a while.
These are just a few of the points that the book made, that I’ve tried to connect back to how to talk with your dermatologist about eczema. There are more factors involved that could make the process more convoluted or impossible in some instances, but I do think these provide a light foundation to attempt to build a stronger relationship with the right doctor.
Speaking of the right doctor, I have an older post that goes more into making sure you feel comfortable and that you have a good rapport with your doctor, which was another huge point Groopman made in the book. He explained that a patient who is difficult to treat, simply by having complex issues that don’t respond to more common treatments, often ends up being resented by the doctors, and as a result gets worser care. The suggestions in the book for overcoming these kinds of doctor-patient relationship issues is to say something like, “I know my condition is difficult” or “I feel like we got off to the wrong start” to help try to make the doctor aware of their negative emotional bias.
On the flip side, a patient that the doctor likes too much may also get worse care if the doctor makes overly sympathetic emotion-based decisions like skipping tests to not inconvenience the patient or by avoiding procedures that may cause the patient pain, etc. To overcome this issue, it can be as simple as saying “please treat me like you would a patient you knew nothing about”, and hopefully that should provoke the doctor into making sure they’re as analytical and diagnostic as possible again.
I’d love to hear about any particular experiences you’ve had with your dermatologists in the comments, and whether or not you agree with my suggestions, and also from any doctors out there reading this.
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)?