books, eczema, libraries, my journey

an ode to libraries

assorted books on shelf
Photo by Element5 Digital on Pexels.com

I mentioned this before but eczema has given me lots of time to read, and so I have renewed my relationship with libraries (pun intended).

Historically, I have always been a voracious reader. I have memories of being 10 and sitting down under the playground reading fictional adventure novels while kids ran around me.

I 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.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

career, eczema, my journey

a quarter of life reflection

beautiful beauty blue bright
Photo by James Wheeler on Pexels.com

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.

eczema, my journey, skin biome, skin care

the skin biome part 2

autumn decoration fall field
Photo by Pixabay on Pexels.com

It’s my favorite time of year and I just received my Chuckling Goat package (but more on that in a bit).

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A few months back I wrote a post about the skin biome and how I was excited by the small movement of companies creating products geared towards helping it. Since then there have been developments about different companies creating products to help either work with the natural skin biome or to help reintroduce micro-diversity to create an appropriate balance for healthy skin.

I didn’t know it previously, but Johnson and Johnson had a movement a while back to create products that didn’t mess up the skin microbiome of babies’ skin. Such products, like Aveeno Eczema Therapy Moisturizing Cream have some studies showing that they actually help to increase the microbiome diversity of the skin with use over time.

The company has become skin microbiome-focused in a multitude of ways, including offering use of their JLINX incubator under the JLABS. S-Biomedic has joined JLINX and is working to create products that remove the bad bacteria and replace it with good ones to balance out the diversity of the skin back to a healthy level. This idea of balance is becoming more and more accepted as it is found that overuse of antibiotics is causing more harm than good for conditions like eczema. Studies are showing that balanced diversity is what we need for our skin biome, rather than sterility (noting that antibiotics still have their place, including when surgery or infection is involved). Microbiome transplants are now no longer a thing of the future but are instead potentially the next big medical treatment protocol!

More recently, I read a book called The Good Skin Solution by Shann Nix Jones, that talked about the gut and skin microbiome and Jones’ personal experience as to how she came to develop a treatment to help manage her young son’s eczema. The goal was to help increase the diversity of both microbiome using the probiotics in kefir made from their goats’ milk. When it was a success with their son, her and her husband decided to sell their products and hence the Chuckling Goat business was born.

Jones reintroduced me the theory that you need to fix your gut microbiome to have any really lasting effect on your skin, but she added the idea that it’s best to treat both at the same time, (hence her her program that includes probiotics for both the skin and the gut). Needless to say I was intrigued so I looked into her products and went on to order some (but unfortunately I can’t get the kefir drinks because I live in the states and they don’t ship that outside of the UK).

Today the soaps and lotions arrived and I am beyond excited to receive them (happy as a clam… or a ceramic jack-o-lantern!). See my spoils below:

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I’ll have to figure out what to do to increase my gut flora diversity in lieu of kefir, as I was advised to avoid dairy while breastfeeding to see if that helped with Fi’s digestive woes. I’m not sure if goat milk would be okay since it is supposed to have less allergenic components than milk. I may just wait until Fi is done breastfeeding.

 

REFERENCES

Myles IA, Earland, NJ, Anderson ED, Moore IN, Kieh MD, Williams KW, Saleem A, Fontecilla NM, Welch PA, Darnell DA, Barnhart LA, Sun AA, Uzel G, Datta SK. First-in-human topical microbiome transplantation with Roseomonas mucosa for atopic dermatitis. JCI Insight. 2018 May 3;3(9):e120608.

Parikh-Das A, Ganopolsky I, Nunez C, Moreira L. A clinical trial to evaluate the efficacy of a OTC colloidal oatmeal skin protectant cream in the management of mild to moderate atopic dermatitis in infants and toddlers. JAAD. 2017 Jun 76(6);AB10.

Puniewska, Madgalena. “How the Microbiome Could Transform Your Skin in Surprising Ways.” Johnson&Johnson Innovation, 12 Oct. 2017, https://www.jnj.com/innovation/how-the-microbiome-could-transform-your-skin-in-surprising-ways.

 

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

eczema, my journey, pregnancy, skin biome, skin care, women's health, wounds and infections

breast milk for wound healing

agriculture animal blue sky breakfast
Photo by Pixabay on Pexels.com

As some of you may know I am currently nursing my 3 month old baby girl, and in doing so as she is my first, I’ve learned that leaking is a thing (sometimes it occurs when she’s nursing on one side- the other side will start to drip milk, and other times they seem to leak for no apparently reason at all). As I wear nursing pads in my shirts during the day, the problem begins at night when I’m in bed trying to sleep. The leakage then can be really annoying. So my most recent solution has been spreading the milk on my skin, because why not- it’s already leaking all over it anyway.

My less impulsive logic for trying this experiment came from some research I had been doing a few weeks ago about breastmilk and its health benefits for the baby. Fi got sick and I wanted to know how her immature immune system could handle sickness when she only intakes breastmilk as her food source. This search led me to an internet viral photo showing how a mom’s breast milk changed when her infant got sick. The 2013 study mentioned in that post talks about breast milk’s immunological function and explains how when the mom or baby get sick, the number of leukocytes (aka white blood cells) in the breast milk drastically increases to help protect them, because leukocytes help fight disease (which I found to be such a cool example of symbiosis. I personally have also noticed that breastfeeding seems to keep both me and the baby from getting too severe of sicknesses. In fact, my mom, mother-in-law, and husband each got sick after the baby was born yet Fi and I were fine!).

I also read an article by NPR addressing the breastfeeding versus formula debate for poor countries.  A point it stated made me more curious about breast milk; it said formula can cause increased risks of diarrhea and respiratory infections. I assumed this is so because it requires using water to make (and clean sources are not always available in impoverished countries) but maybe it’s also because formula doesn’t have the same chemical and bacterial composition to allow it to be readily accepted by the baby’s developing digestive and immune systems? By extension I supposed that breast milk had to have some component in it that generally allows it to not irritate the digestive and immune systems*… which is my big sign to think “MICROBIOME” (* this of course is excluding when the baby has allergies or sensitivities to something the mom is eating that is going into her breast milk). The article also talked about how it’s weird that we are constantly trying to research the benefits of breastfeeding when it’s as natural as “breathing, chewing, hearing, passing stool”. But we live in a society where we need evidence and so I decided to play the game of informal (and badly controlled) science to see if I could test my own theory, that breast milk may help with (eczema) healing.

I did not participate in the rigors of the scientific process because I am lazy and I doubt Fi would be content amusing herself long enough for me to do it, but instead I just dabbed some breast milk on my shallow cuts every now and then instead of using neosporin or leaving the cut alone. My observations: it would seem as though breast milk can help with reducing the pain of shallow cuts (I tried it on the cracks on my knuckles and outer ears, cuts on my ankles and hands), and helps to speed up the healing of said cuts. It does not moisturize (the spots I put it on tended to be drier the next day… though that could be because when cuts heal on me, they start skin flaking…) but overall, the spots I put it on did seem to heal up and achieve a cleaner scab and softer skin around it.

Apparent cons of this experiment? The milk can sometimes burn (but again, everything burns when it touches my inflamed skin spots… even water) and it’s also a little sticky but it dries sticky-free. Fun fact, I have a pet peeve about being sticky. I hate it. So much.

After this self experiment, I was more curious to support why I might be seeing the results I saw so I did some low level cursory research. Also speaking of research, I received my diploma the other day. I officially have a Master of Science in Health Sciences from MGH Institute of Health Professions. I am now a MASTER of science. The academic title of master seems somewhat archaic; I envision myself similar in status to an entry-level alchemist or and mage, as I have established myself in a trade, but it will still take years to perfect my craft. Anyway…

There’s not a lot of recent research being done (or at least it’s not readily available yet) but I did come across two recent ones. This first paper, of which I could only access the abstract, tested wound healing of the cornea (yes, of the eye) in mice using human breast milk, milk from mice, artificial tears, and the control group. The results were that the human breast milk caused the fastest healing, followed by the mouse milk. The other two groups (artifucial tears and the control) were still not healed by the end of day two. The other study I found was published in 2015 in Nature, and it was titled, “Human milk proresolving mediators stimulate resolution of accuse inflammation”. It came to the conclusion that the lipid mediator-specializing proresolving mediator profile (a ratio of sorts between lipid mediators and specialized proresolving mediators) in human milk helped the macrophages (or cells that engulf bad bacteria) to contain pathogens and remove dead cells (in a process called efferocytosis- my word of the day). It is important to note that this was seen in vivo (in mice), and that breast milk was not applied topically to the skin. If the results are applicable to humans, I see this study as being useful because people with eczema suffer high levels of inflammation internally not just on their skin, and because turning off the inflammatory phase is also important in wound healing (more on this in a later post).

After that article I backtracked and wanted to know more about what breast milk is, which led me to this document that included the various components of breast milk (though I can not find the professor or the molecular virology lab anywhere else on the web…). Also note that the tables say the various factors are tested “in vitro” meaning not in the organism (for example, secretory IgA from breast milk was probably removed from breast milk and tested in a petri dish against E. coli). Even so, the breadth of potential abilities of breast milk, due to its staggering list of factors alone was interesting in its own right.

In conclusion, though I don’t think breast milk applied externally heals the mother’s eczema or TSW, I do think it can help me with superficial wounds, especially when it’s the middle of the night and I am otherwise unmotivated to leave the bed even if I’ve been scratching.

 

REFERENCES

Arnardottir H, Orr SK, Dalli J, Serhan CN. Human milk proresolving mediators stimulate resolution of acute inflammation. Mucosal Immunology. 2016, May 9;9(3):757-766.

Asena L, Suveren EH, Karabay G, Durson Altinors D. Human Breast Milk Drops Promote Coreanl Epithelial Wound Healing. Curr Eye Res. 2017 Apr;43(4):506-512.

distraction, eczema, my journey

distractions and disorders

pexels-photo-1002693.jpeg
Photo by Juan Pablo Arenas on Pexels.com

I swear I have a post I’ve been working on that is (relatively) thought out and not like this one where I am just typing as I think things. But alas, I cannot finish anything lately and so that well-constructed post will be another day or two. I still spend many of my days in a haze, and not because of the baby, as you might have thought. Oh no, it’s because my skin has decided to develop a fresh subcutaneous sheen of itchiness. Barely perceptible to the naked eye (my skin looks pretty good lately, minus scabs and scars), it plagues me especially when I lay down for the night. Why am I flaring? I have no idea, especially since the skin is looking better. Maybe it’s the change in weather. Or perhaps it’s something I ate (which is always my fear). Who knows.

When not in a haze, I spend a lot of time scouring my kitchen for things to eat. As prescribed by the pediatricians I’ve been taking Fi to, I am no longer eating soy, dairy, wheat, or egg products in my food. Though I am no stranger to partial elimination diets or other dietary changes, I don’t think I’ve ever avoided egg yet while among the others. So now you’ll often find me longingly looking at a pasta box, and eyeing the forbidden cheese as a hobby. That takes up a bit more of my time.

Then (and eventually I’ll have to do a better post about this) there is the time spend dealing with my excoriation disorder (also known as dermatillomania or skin picking). I have always had a weird tendency to scratch at scabs and pop pimples (I know, gross) when I was young, but with the onset of global eczema and the constant scratching for months on end, I definitely fell firmly into this disorder. Sometimes I can be less destructive, or channel the destruction into societal acceptable forms (like using tweezers to remove leg hair), but other times I spend collectively hours picking off dead skin and harassing healing skin. I don’t have the common concurrent comorbidities of depression or trichotillomania (hair pulling) or OCD, though I have noticed that since the age of my worser flares, I do tend to be more obsessive with time wasting things (like trying to get my graduate notes perfect, which entailed me rewriting them over and over in different notebooks, never actually managing to finish one before I had a new idea of a better system to help me study more efficiently). Anyway, so to combat that I try to keep my nails really short, and keep my hands clean and busy, whether that’s typing blog posts, reading, or wildly gesturing to my baby to make her smile (still waiting on that first laugh), I try to condition myself to not focus on picking.

Then a large portion of every day I spend worrying that I should be working, that finding/creating these part time opportunities while staying home with Fi is not enough and that I need something full time. I don’t know why I’m so insecure about this, the people in my life have been nothing but supportive. Perhaps it’s from the occasional comment, or the sporadic question about when I’m going back to work, am I back at work, do I enjoy being back at work. Or my favorite one to answer, “what do you do?”. The sassy bit of me wants to retort, “well I exist, so eat, breathe, sleep, and shit are on the list. Then I like to round myself out by engaging in basic hygiene, getting exercise, and enjoying sunshine”. Obviously, I keep these kinds of comments in my head.

Even when I was little I was less interested in a career pathway than in making adventures and experiences into stories ( well, except for a brief stint where I wanted to be a dentist because I thought teeth were interesting and I wanted to be the gentle-handed one that removed people’s fear of getting dental work done). I wanted to be a writer because I loved stories and just wanted to create my own. I was obsessed with reading multiple books even at social events because I loved finding out what happened next. And if I’m being honest I still want to be a writer today, just a different kind. Then after that I decided I wanted to be a naturalist… only at the time I thought naturalist entailed tying a cloth around a stick and adventuring into the woods to forage for edibles. I do think that was just a storyteller’s bend on biology (which I then went on to study in college… hmm). Momentary break

What was this post about? I actually had to quickly scroll up to see the title I wrote earlier. In my defense, I walked away from the computer for a while to change Fi’s diaper and make more food, then to feed Fi again. Oh right, distractions. That’s apt. I guess I should have said distractions from what. I suppose distractions away from making a clearer post. Unfortunately that’s the nature of the game I’m playing lately. I have all these ideas for posts, many of which I’m working on, but the more research they require or the more motivation for words I need to work towards, the longer it takes to actually complete.

Oh, and another distraction is the book thing. I have a book problem. I tend to get 10+ books at a time from the library and then pigheadedly want to finish them all before their due dates, despite not having unlimited time to read. So instead I end up binging books in the middle of the night which doesn’t help with the insomnia. And then I’m more tired the next day. Whoops.

Anyway so this winter I am trying to distract myself from bad habits. This winter I’m am going to try extremely hard to keep my skin going in the right direction: healing. Usually once the cool air touches down and I inevitably become more sedentary, my skin becomes crap. So now I am trying to mitigate that by embracing winter’s cold touch (and trying a rotation of new products for different flare periods) and making sure I exercise more. And to combat the winter body blues (also in lieu of doing a drinking game with a TV series), this past weekend my husband and I made a fitness game. We tally up various events in a show which then equate to an exercise to do. After each episode we have to do the routine before we can go to the next one. Currently, we have one template for True Blood and I’ll describe our rules below.

True Blood Drinking Fitness Game (amended to make a single episode be more or less a full workout)

Anytime:

  1. anyone cries tears = 10 body weight squats
  2. someone dies = 1 lap around the house
  3. someone makes love = 5 pushups
  4. someone drinks alcohol or blood/V/trublood = 2 burpees
  5. someone is racist/sexist/vamp phobic = 25 calf raises
  6. Sookie responds to thoughts = 10 mountain climbers/side
  7. someone shape shifts = 5 high jumps
  8. there’s a fight = 10 bicycles/side
  9. someone is invited into or kicked out of a house = 15 second plank
  10. a main character is threatened/in danger/attacked= 5 bridges
  11. a new supernatural being is introduced = 50 butt kickers
  12. glamour is used =10 lizard steps
  13. someone is shirtless = 10 bear steps/side
  14. some says a sexual innuendo = 10 side steps/side
  15. someone has a dream/nightmare/daydream = 1 turkish get-up
  16. someone says “f*ck you/off” = 5 single leg deadlifts
  17. a vampire speeds somewhere = 2 lunges/side
  18. someone says “Sookie” or “Sook” = add one to a previously blank or lower tallied number above
  19. a main character dies = x2 to all above

So far it’s been entertaining and usually we get a decent workout. We started adding more stipulations as we continued watching, which led to longer workouts (a good thing since True Blood episodes are about an hour long, so we are up and moving for longer periods between). Anyway, I’ll leave off this post there, especially since I keep getting distracted by the yummy smells coming from the oven telling me dinner is ready!

eczema, exercise and activity, flare-up, food and nutrition, my journey

why eczema is so hard to solve

assemble challenge combine creativity
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Over the years I have gotten so much advice from well wishers about how to cure my eczema. While some of the suggestions may be useful, more often than not they aren’t, and it may not be because the advice is something I’ve already tried or something outlandish. It may be more so because advice about a single aspect in my life to change doesn’t do anything impactful, because eczema’s root cause can be anything but singular. I know some people are lucky: they remove the allergen (mold, gluten, soy, eggs, nightshades, dairy, dust), they decrease their stress, they exercise more, they find a supplement that really works, and bam, no more eczema.

Unfortunately, I am not one of those people. My root cause seems to be tied to many different aspects, from overuse of topical steroids, to unresolved emotional issues after familial deaths, to increasing sensitivity to foods (on top of food allergies I was born with), to increasing discomfort with specific exercises and a sensitivity to heat and sweating, etc. So being given a new product to try doesn’t really solve the other issues preventing me from quickly recovering from each flare.

What I do find interesting, is people that have learned to live with eczema (and/or topical steroid withdrawal) and the various lifestyle changes they have done to help keep their flares under control. I came across a post a while back called The Metaphysical Meaning of Eczema – Do People Get Under Your Skin, which I thought would just be talking about how my emotions cause my eczema, but I was pleasantly surprised to read the author’s inclusion of a whole host of other things she does in her life to help. Because yes, I am sensitive, both skin-wise and emotion-wise (I can now flare-up from heightened nervousness from public speaking, or due to misunderstanding over trivialities at the store) but, and I am indignant about this, my sensitivity didn’t cause my eczema, and it definitely didn’t cause my topical steroid withdrawal. It probably is the reason it takes me so long to heal (on top of the constant flow of changes in my life… e.g. getting married, moving 4 times, leaving my graduate program, buying a house, having a baby- all within the last 3 years). I have learned to be zen about skin-related sleep deprivation, about hives from foods I normally can consume, over having to adjust all forms of activity I enjoy, over forgiving myself for making “mistakes” that then provoked a flare, etc. I know I still have a ways to go to consistently help my emotions flow naturally and not build up stress, but I have made immense progress and my skin doesn’t always reflect that. Hence why I get up in arms when people try to reduce my condition down to me “just not doing x”.

Woof, okay so now that I’m done that rant, back to my initial idea around today’s topic. The point is, eczema can be a multifaceted b*tch of a condition, with varying twists and turns that dictate how it goes for different people. If you don’t believe me, try reading the experience of Daniel Boey in his book Behind Every Itch is a Back Story: The Struggles of Growing Up with Rash, or peruse any number of personal blogs out there these days about someone going through TSW.

My point is that while I am happy for people who find ways to rid themselves of eczema flares through a singular method, I find it frustrating when we see the gimmicks of “anyone can cure their eczema if they just do x!” and find it somewhat damaging to reduce all people with eczema into the same world because said singular solutions don’t work for everyone. I appreciate people that talk about the myriad of changes they have had to do, because it shows that the cause of eczema, as it is still unknown for the most part, requires different management for different people, hence why it is so hard to “solve”.

Note: Some of the above links are affiliate links. This means that if you click on one and purchase an item, I will receive a small affiliate commission (at no cost to you).

career, eczema, my journey, NEA, travel/traveling

having 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 has completely derailed my initial career plans, and because Helen is the first person I relate to whose eczema 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 many 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.

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 then people and organizations who are doing the research and making the policies that will affect the people with eczema.  After all, 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?

 

eczema, exercise and activity, flare-up, food and nutrition, my journey, women's health

eczema with a newborn

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For the first few days after having my little one, I was on such a high of nerves and adrenaline that I felt great!  I had been on antibiotics while in the hospital, and after getting home my skin started to feel really dry. I started taking some probiotics and focusing on drinking lots of water (I knew getting enough sleep was a lost cause), and keeping my stress down.

Initially, my skin was calm enough that I had no problem doing skin-to-skin contact with baby Fi, but around week 4 or so I started to experience more flare symptoms- sweating, itching, redness- whenever I had the baby lay on me for too long. I started to have to wear long sleeves when holding her to not get overheated. I’m not exactly sure when this happened, but it may have also correlated when the humidity increased, and the temperature with it.

I’m not sure if it was due to the antibiotics, the temperature, the lack of sleep, the terrible diet I had in the hospital (think chicken fingers and ice cream for multiple meals in a day), or the hormone fluctuations but my skin definitely became more sensitive post-pregnancy. Though estrogen has been considered one of the reasons women can flare-up worse during pregnancy (see my post about pregnancy and eczema), after pregnancy the estrogen drops so it’s unclear what would be provoking my symptoms (besides the above mentioned items).

Either way I’ve had to be more creative about adjusting to life with a newborn. The biggest aspect I’ve had to cultivate is endless patience mixed with quick stress-reduction habits. My lackadaisical approach to getting house and life stuff done has been somewhat of a saving grace because my little one has wreaked havoc on my schedule. I’m exhausted in the afternoons, I have no idea what it feels like to sleep more than 3 hours at a time anymore, I tend to eat a bit worse now (mostly eating too many carbs and too much) because I lack the self control to stay as dietarily balanced when I’m sleep deprived. It’s something I’ll have to work on in the coming months.

I find ways to not focus on my skin when it’s getting all sweaty from holding her and I have learned to wear light layers or wrap a small blanket between her and myself when breastfeeding to avoid irritating the more sensitive skin areas like my stomach.

There are some inherently awesome aspects to having a newborn when you have eczema (at least in my experience). For one, I tend not to think about myself as much so I am not as aware when I am itchy. She keeps me busy to such an extent that even when I’m immersing my hands in water (which is traditionally a huge irritant) to give her a bath, I barely notice. Also, lately my core temperature seems to be evening out even as my skin fluctuates (which means that the hot, sweaty skin nights and cold shivers have been decreasing). I actually enjoy the cold temperature more than I used to, and I don’t enjoy basking in the sun for quite as long.

And overall I do think that my skin has been able to consistently heal slowly but surely. I feel as though I look more or less human again, what with the redness decreasing.  I think the hormones from breastfeeding are helping my skin heal to some extent; I know my hair has gotten shinier, which is an awesome boon.

eczema, my journey

rain and insomnia

selective photography of glass window with drops of water during nighttime
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My thoughts at 4am this morning:

Itch-induced insomnia has been a big irritant in my life lately. Once awake, the sweet whispers of my deeply creative but poorly timed imagination spring into gear and I’m left day-dreaming and pondering through all the remaining hours of the night.

Tonight, a mini torrential downpour has started after 4am,  and I am intrigued by how amiable my feelings are towards the storm this day. Normally a grey, cold (for summer), rainy day is grounds for temporary depression as I pine all day longing for the sweet golden rays of the sun, and its many bright possibilities.

But today, I welcome the rain. It comes on a day when I already plan to stay in, with warm (virgin) hot toddies, familiar movies, nourishing home food, and the best cuddlemates I could ask for beside me.

Today, the sounds of the rain drumming on the roof by my window are a delighting orchestral ensemble performing a liquidity symphony to my receptively excited ears.

Today, the inconsistent downpour reminds me of the magic of rain, the primal feeling of newness and cleanness, the rain washing away all the dirt and build-up of previous time to which I mirror by washing away all excessive build-up of thoughts and itchy urges.

Today, I embrace the celestial water overflow as the omnipresent benefactrice to my althaea offinialis, and let the staccato melody lure me back to sleep and into healing.

alternative/holistic medicine, eczema, exercise and activity, flare-up, food and nutrition, my journey, NEA, pregnancy, relationships, skin biome, skin care, sugar, topical steroid withdrawal, topical steroids, topicals, women's health, wounds and infections

my deviation from the beaten path

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Today’s post is all about trying to convey what life with eczema is like for me. The first thing I need to stress is that my condition was not always this severe. I can remember a “before”, as my condition didn’t start affecting my skin globally until I was 21 or 22.

So how has eczema affected me?

  • insomnia – Some nights I was unable to sleep until 6am. More recently off and on I have difficulty sleeping from midnight to about 6am.
  • food paranoia – Given that I have legitimate food allergies to peanuts, pistachios and cashews, I know how to deal with food allergies that cause anaphylaxis. What I don’t know how to deal with is the thought that some common food might have developed into being the cause for the severity of my skin issues. Also sometimes I’ll eat something that is usually fine for consumption, and I’ll break out in hives in my mouth inexplicably and the next time I consume said food, it won’t happen.
  • many different diets – I have tried the gambit of elimination diets, auto-immune diets, vegetarianism, paleo diets, sugar-free diets, low-carb diets, detox diets, etc).
  • food-related social repercussion – You have no idea how frustrating it is to have people think I am “just being picky” when I am avoiding certain foods or diets. It’s usually when I’m avoiding gluten, dairy, or soy or other common American-diet staples. What I don’t understand is why people think I enjoy avoiding these foods… do they not know my undying love for pizza and ice cream?
  • intimacy issues – picture not being able to cuddle on the couch while watching a scary movie without covering myself in a blanket to make sure my skin doesn’t touch my husbands. Long drawn out hugs? Nope.
  • skin-to-skin with baby issues – I have adapted to the lifestyle of needing to put a barrier between me and my baby’s skin. When I feed her, I throw a cloth on or wear long sleeves before I put her head on my arms. When I have her in a carrier, I try to put a layer between her face and my chest, or else I know I’ll have to take her out earlier as my chest will start turning red, flushing, and itching.
  • exercise limitations – Up until my junior year of college I was doing many different sports and activities including soccer, track and field, long runs on my own, ultimate frisbee, generically running around like an idiot, etc. Post-eczema life, unless I can get a flare to calm down for months, cardio is a nightmare. Hell, at this point in time, just going for a long walk in the summer induces itching everywhere that takes at least 10 minutes in an air-conditioned building to relieve.
  • summer nightmare – See what I mentioned about walking above and now just add that to general life in the summer. I do well if I don’t move, and if I avoid direct sunlight. Though I also need sunlight for vitamin D (and in my previous life I loved the sun) so I’ll pop outside for a few minutes to bask in the sun’s warm embrace and then I’ll overheat and have to come inside. At least the itching only starts if I sweat.
  • pain (cracked skin) – During certain stages of a flare I dry out (especially at night or after washing my hands or other random times) and my skin will crack. The worst areas are my hands (which will fissure all over) and my ears, as well as sometimes under my eyes.
  • obsession – I spend so much time thinking about my skin and worrying over if I am doing something to make it worse, or not doing enough. It gets exhausting really.
  • career switching – I dropped out of my physical therapy doctorate program because I just couldn’t deal with my skin. I wasn’t sleeping, I was uncomfortable sitting (more on that in a bit), and I couldn’t stand being in an air-conditioned room (see below), or being touched or coming in contact with another’s skin, which made it incredibly difficult to practice the hands on aspects of PT. I am now still in a stage of making my own career, which while exciting, is stressful when I have to talk about it because it’s not a clear cut “oh, yeah, I do X” anymore.
  • fear of infections – As my skin barrier is compromised so often, the risk of infections, primarily Staph, is high. I spend a lot of time wondering if I am infected and worrying when I catch a cold or something that I have contracted Staph (again).
  • hand washing (pain/itching) – Imagine how many times you have to wash your hands or use hand sani when you are a PT student working in a clinic. Doing dishes is irritating enough. Sometimes even just taking a shower will irritate my skin.
  • cleaning frequency – Given that I shed skin faster than the average human, I spend a lot of time cleaning to try to not live in my own skin dust filth.
  • social situation aversion – When I am flaring, I have no desire to go out, not only because I worry about the stares I get for physical appearances, but also because it takes so much energy to deal with varying temperatures, varying foods, varying stressors, usually a lot of sitting, the inability to play/dance without itching, etc.
  • general discomfort (pain, itch, smell) – Eczema this severe is uncomfortable. The obvious is that it itches, and not like a “I have a random little itch” but more on the level of if a swam of mosquitoes bite you all over your body but instead of having angry welt-y bite marks externally, they are all inside your body and not visible to anyone. The pain comes from the cracking I mentioned above, as well as the pain of the self-inflicted wounds from scratching too hard. When I have a bad flare, I develop this scent that I call the burning rubber skin that I loathe.
  • depression and anxiety – It’s no surprise that aggressive and long lasting flares take an emotional toll. As I spend time in pain, itching, paranoid about foods I eat, avoiding people, and unable to exercise and play as I normally would, sometimes my moods take a nose dive.
  • money spent – From skin care lotions and moisturizers, general soaps, bath products (bleach, epsom salt, apple cider vinegar), natural house cleaning products, dry brushes, the rebounder, to the doctors’ visits, etc, this condition isn’t cheap.
  • doctor visits (dermatologists, endocrinologists, neurologists) – There is something very frustrating about seeing many doctors and still getting no relief. I have moved a few times in the last past 4 years and as a result have an even larger number of individual doctor visits under my belt. The general consensus? I am fine (as in no underlying crazy cause of my skin issues like cancer), but I have eczema. Oh and have I tried using steroids creams? -.-
  • hormone imbalances – Since I spent so much time inflamed, I usually have a highly elevated level of immune stuff, like my white blood cell count. When my skin first started going haywire, I also have high cortisol level, which made doctors think I had a hormonal imbalance and first order an MRI of my brain.
  • forever fielding questions – “Have you tried X??” “What’s wrong with your skin?” “Do you use lotion?”
  • excoriation disorder (dermatillomania) – Due to very often having flaky skin, I have developed a picking disorder where I spend inordinate amounts of time trying to remove dead skin from my body. It’s become partially therapeutic and partially me trying to exert control over my uncontrollable presentation.
  • scratching OCD – I scratch all the time. In my sleep, when I’m stressed, when I’m relaxing. I don’t even notice I’m doing it sometimes.
  • scarring – Go figure from all that scratching I’d have scars.
  • ring wearing/jewelry/piercings – I no longer wear my wedding band on my left hand because the ring finger on that side is usually swollen. I wear it on my right now. I also had to take out my belly button piercing, my nose piercing, and all ear piercings except tragus one because the skin started itching so badly around them all.
  • hot inflamed skin with cold chills/shivering – One of the worst stages of a flare is when my skin is constantly wet and weeping and heated, but I’m losing so much heat that I am internal freezing and will shiver uncontrollably.
  • winter is bad – It’s hard enough to regulate my body temperature without the weather outside being frigid.
  • sensitivity to pressure contact (sitting/laying down) – This made PT school very trying. Hell, going to a doctors office and laying on the table, or sitting on a chair for too long made my skin feel terrible and heat up and start itching. This is even through wearing long sleeves and pants.
  • nervousness = flares – Some nervousness is good for keeping our brains alert. Unfortunately, any little bit of social nervousness (like before a practical or talking to new people) would cause me to start to flare and itch.
  • wrinkly, swollen skin – Still not sure why this happens (maybe it’s a product of topical steroid withdrawal) but the skin around my joints especially, on the extensor side, starts to look like that of an elephant.
  • discoloration – From redness to drying out gray/white, I am a veritable human mood ring.

And since people love me and will forever want to help, here is a list of what I have already tried:

  • topical steroids (for a good 20 years as this was the main accepted solution to eczema for decades)
  • topical medicines that are not steroids (Elidel/protopic, etc)
  • oral steroids
  • lotions/moisturizers (cetaphil, cera ve, aquaphor, dove eczema line, exederm, burt’s bees, obscurely-named-other-ones, etc)
  • going moisturizer free (actually does help with the red/weeping stage)
  • ocean water
  • chlorinated pools
  • naturopathy
  • acupuncture (including herbs, cupping, and massage)
  • diet (gluten free, soy free, dairy free, vegetarian, sugar free)
  • phototherapy (clinically done in light boxes, and just being in the sun)
  • antihistamines
  • sleep aid pills
  • yoga, meditation, and deep breathing
  • coconut and sunflower oil
  • bleach, epsom, and apple cider vinegar baths
  • antibiotics
  • collagen powder (edible)
  • collagen cream
  • wound care
  • probiotics

Update: I have not tried any biologics because I have been pregnant and am now nursing.

Despite all the shit that comes with eczema, there have been some silver linings in my experience including:

  • Having to deal with eczema year round has made me live much more seasonally. In the warmer months I try to take advantage of being able to walk outside for hours and garden to get vitamin D and get exposed to bacteria in the soil (and as stress relievers). In the colder months I turn to herbal teas and nourishing soups, and bundle up well to go on walks to get fresh air. I pay a lot more attention to what can grow when, and try to eat accordingly (like lighter foods in the summertime).
  • Having dealt with the difficulties of eczema for so long, in juxtaposition pregnancy wasn’t half bad (though to be fair my belly was small and I didn’t have morning sickness… but discomfort with sleeping? Aversions to certain foods? Tired randomly? Feeling generally uncomfortable? Yep, I was used to that all already).
  • In effort to control my flares, I am constantly open to trying new things (though my wallet isn’t!).
  • When I first came up to visit Jake, before we were dating, we had an honest conversation about eczema and I told him how bad it gets for me, and he still wanted to be with me. To this day, I’ve never had insecurity about my skin around him.
  • I have learned to really appreciate the good days. As a result, I’m generally even happier of a person.