all posts, mental health, miscellaneous, parentings/things about baby and kids

late night tangential rants of insomnia

Middle of the night

I tried my hand at cooking.  I won’t say proper cooking because I winged most of it and have no culinary finesse, but I had some successes. Not the intended ones but whatever.

The spur to cook came from starting Susan Herrmann Loomis’ book last night called On Rue Tatin and it reminded me why I keep falling in love with the French language. The provençal love affair with the harvests of their lands feels so wholesome,  so hobbit-y, which is my constantly reoccurring aspiration. So I tried to dabble. I won’t say it was fun but if nothing else, I got a better diversity of vegetables in me than I have in months.

My goal is to learn how the south-of-France French prepare dishes, and then twist the dishes to be inclusive of native seasonal plants growing in my home state. Step two is to prepare to grow some lovelies for ourselves this coming year. And step three is to work towards sustainable harvests and/or local buying. These steps can be simultaneous.

I feel as though every action and thought I take these days is all just a step towards becoming a hobbit because as Tolkien’s (or Peter Jackson’s) character of Bilbo says, “it is no bad thing to celebrate a simple life.” As I get older, I feel it more and more in my bones, that all I want to so is live a simple life. But defining what that means in a modern era proves to be endlessly frustrating.

I also feel like I have to keep discovering mentally myself because I don’t know myself at all. Pretty clear that I do in fact have some form of OCD given the increase in intensity of certain habits (getting bursts of dopamine from picking my skin of “impurities” when I have severe eczema and doing so instead of sleeping, scrolling back through years of content to start at the beginning of blogs, my aggressive aversion to sticky things touching my hands, my tendency to ruminate on my future “path” ad nauseam to the point that I have notebook after notebook of unfinished plans of what I will do with my life starting since before college.

I definitely also suffer from anxiety, but at a more manageable level, given how often I freak out that my little one will die from my negligence (the newest edition today being that she somehow manages to break her own neck in her carseat while we are driving home). I lose sleep over trying to figure out how to make a successful career and balance being a stay-at-home mom, and also how to not become part of any pyramid schemes.

And given how much happier I am since the move, I fear I did in fact have postpartum depression. It got to the point where trying to muster energy to leave the apartment at all felt like a chore, and really the only time I did it was to take baby to her toddler music class or to drive Jake to work. I didn’t want to cook for myself, I didn’t want to  make plans with others, I didn’t want to do anything really. Which naturally triggered my anxiety for Fi because I knew I was doing her wrong by being a recluse.

Thankfully it seems that era of my life is over. Maybe I needed to be back in a familiar territory. Maybe I needed to be near my parents who know when I need to be dragged out of the house, and/or when I just need help. Who knows. Either way, I’m glad that mental hurdle is lessening, and wish I had caught it earlier.

I think my other issues are that I undervalue any impact my mental health may be having on my actions because I blame everything on my skin, which probably is part of the problem, but at the same time addressing my anxiety and compulsive picking would definitely help the skin heal as well.

Also my other constant struggle is that I still love blogging but I don’t like how it became so trendy. Now I can’t disentangle myself from thinking about my standing in the interwebs, how to get more likes, comments, followers, etc. I don’t want to follow a theme, but man it would be sweet to make a career out of just spewing my thoughts. Dream job? “Yes, yes” (said in the voice of Eric Foreman from That 70s show).

Also I feel like at some point I have to accept that nighttime and sleep don’t work for me. I think I oscillate between 2-5 hours most nights and the causes of disruptions vary. Lately, I stay up because it’s the quiet time when I have the world to myself, so I usually stay up reading. Other times I wake up (or stay up) from anxiety (or recently fear of my new home), and sometimes it’s due to itching or sweating that I wake up/can’t sleep.

Also sometimes I make typos that crack me up. Like robin –> ribib3. I’d blame the autocorrect (because it doesn’t work… or I may have turned it off on my phone) but honestly it’s usually that I don’t care to correct myself anymore if I think my point still got across. This usually applies only to texting. For blog posts I care a lot and will randomly go back and read posts from months ago and find mistakes to fix. But not systematically in a way that actually gets anything done. Oh no. Just randomly here and there.

I feel like Maury the hormone monster is yelling at me, saying “Rage, rage, fucking rage!” But instead replace rage with rant. I bet I’m feeling so ranty because I didn’t get to chat with Jake as much as usual since he’s out of town for tonight for work and apparently I dump most of these thoughts in him or else they spill over into the blog. Oops. So you should all be happy for the dam that is Jake to the diverted water flow that is my mind.

Maybe I should have stuck to google’s blogspot. They didn’t charge for changes like wordpress does. And  I want to change my url all the time. But wordpress looks so clean and pretty and now I’ve got years of posts on it, and I love chronicles. Ugh.

I should drink more water.  That’s not a tangent but just a stand alone thought I have multiple times a day. And yet, I never quite achieve a moderate amount of consumption. Hmm.

The next two paragraphs I had to delete because in my infinite sleep wisdom, I copied and pasted a previous two.

Another OCD tendency: I start a notebook with one thing… say it’s things I need to do. Then after a little while I realize I want to write about something else say books I want to read, but I don’t want to use the same notebook for this new topic. So now I either have to start a new notebook, which seems wasteful and excessive, or rip out the original pages which seems needlessly destructive. Or I share the notebook with both ideas and over time the book becomes a crazy incoherent ranting pile of all kinds of ideas and lists and notes to self.

This is a complete tangent but I just wanted everyone to know that it is possible to breastfeed on demand and still have a baby that sleeps through the night.  Pediatricians I encountered all told me I’d have to at least night wean to get my little one to sleep through the night but they were wrong. Haha!

Andddd I’ve got less than 2 hours before the little one wakes up. Fuck.

Later

Posted much later. I breastfed the baby in bed and put baby shark on repeat to gain me another hour and a half of being horizontal. Life hacks.

all posts, community, mental health, mortality, nature/the environment

death as my guide

Death studies

I have been reading books on books about death. Death from the perspective of the dying, death from the vantage point of medical professions, death from philosophers, death from people who have lost someone. It’s weird to say, but I love death stuff. Not because I am morbid and have a weird fascination with the idea of being dead (frankly that scares the bejeezus out of me and sends my head into terrifying loops trying to conceptualize it), but because outside of being born, dying/being dead is the only thing I will share with all humans/living things on earth (except maybe tardigrades, and I’m still not convinced they aren’t aliens).

It’s a strange place to be in, being a student of death. I began by systemically reading the most respected books on the subject, am currently looking for a hospice place to volunteer at, and I begin my formal death doula study work in January. In other words, I have jumped down the rabbit hole and am going full speed into embracing the world of mortality.

My shift into this new paradigm of living probably has heavy roots from a topic I mentioned in a previous post. If one lives in a culture obsessed with youth and our early years (think of all the adages we use: “age before beauty”  “you are young, live a little”, etc) having a condition such as eczema/TSW/gene mutation that causes you to have “aged” and sensitive skin to the extent that it alters how you live day to day… eventually you are bound to reflect on the life you are living. The serendipity of ending such a reflection ending up on death’s doorstep is when you look around, you realize everyone will eventually join you. When someone loses a loved one, they are faced with their mortality. When someone grows up able-bodied and becomes disabled, they reflect anew on their mortality. When one grows up in a society that values/develops around intrinsic factors that deviate from one’s own, the forced recognition of not being/having the “in” qualities caused mortal reflections. In every scenario, at some point everyone will be faced with accepting their mortality, so when you do, you are just accepting what makes you innately human, knowing you will die, and the company it comes with is surprising sweet.

I have also been plagued with the urge to try and communicate what I learn from my deep dive into death, and struggle to decide what medium works best to do so. My issue is that I prefer the written hand, but how can I reach others to connect with when the written world is dominated by themed bloggers with deep followings, pay-for-ad bloggers, lifestyle bloggers, and other algorithm-based advantaged bloggers. I miss the early blogging days where it was unique enough that getting your words out what enough to provoke communal responses, before it required hashtags and search optimization. Or maybe I am simply not as compelling of a writer or communicator or thinker, and so my words as mostly unheeded from the larger populace. Either option has the same result. I am stuck learning so much but unable to communicate it with mostly anyone other than my lovely husband, who can patiently decipher my meaning even when my words are obscured by months of sleep deprivation.

I recently also contemplated podcasts, despite my obvious inability to (compelling) speak aloud. My logic was that I would improve in the former, and that most people don’t enjoy reading long form anymore, unless it is streamlined directly into their subset of interest. But who knows, maybe I will return to this idea in a few months or so. It could be fun.

Speaking of months…

Ours flew by and we are finally all moved into our new home. It’s a lovely little 3-bedroom we are renting that is shaped in such a way that our baby’s room doesn’t receive much noise from our upstairs TV room, despite us being able to hear her from said bedroom. As a result, we have been able to talk above a whisper and host friends/my parents after the baby goes to sleep, despite her habit towards light sleeping.

It’s good to be home. I missed this neighborhood, with its friendliness and quirky characters. I am excited to see our little one grow up in this town that is not a town (actually though. I googled it and it is apparently a census-designated place or an unincorporated area with no definitive boundaries). We also have vultures…? I mean, yes of course. I’m studying death so a bird of death must appear!

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At the same time, the transition here hasn’t as smooth as I would hope. Having lived away for years now, I have developed a plethora of bad habits that I need to break (like feeling trapped in a city and thus emotionally eating to the point that I gained 20+ pounds in a year!).

I also need to learn to balance my time in a whole new way now that I have more freedom (including the stress reduction of not being able to get myself and my little one forest bathing/into nature). The flip side of this lovely return to a land with trees and fewer cars is that I have been so inundated in environments that always have a heavy amount of ambient light that I no longer know how to sleep well in the deeper darkness of my childhood town. And at night, every sound this house makes sets me on edge (but that’s the case with almost all new places).

In lieu of sleeping

So now I’ve constructed this post to clear my mind. I also re-read many of my older posts. Since getting into death as a subject of interest, I have been reflecting a lot on myself. I have, and continue to, expend so much energy trying to conform to fit in with models of how I have been trained to believe the world needs to work. Many of my posts reflect this as I oscillate back and forth from trying to get my entrepreneurial start to trying to conform to a cookie cutter career; both in an attempt to fit in with this world model I have internalized from my years on this earth. I’m not saying that reflecting on my mortality has rid me of this tendency, but more so that it has helped me highlight the neuroses of it, which in turn is letting me better chip away at the anxiety that comes from it. Though I am no longer to having the ultimate job/career smoothly going, I have gotten better at trying to figure out what my self-decided purpose is with the time I have on this earth.

all posts, community, eczema, mental health, miscellaneous, mortality, parentings/things about baby and kids, women's health

old plans meet new horizons (aka what I do when the little one sleeps)

In the past, I may have mentioned how I am obsessed with the fourth trimester and all things postpartum, or how when I was in my physical therapy doctorate program, I was interested in going into a women’s health specialty.

After I left the program, I searched for ways to slowly transition into the women’s health field from a different angle. And so from April through October 2018, I worked as a women’s health information specialist for Dr. Brianne Grogan, a women’s health PT and health and wellness coach and the creator of FemFusion Fitness. It was one of those random connections that seems fortuitous- in fact I had contacted her years ago after reading her book (way before I even had applied to PT schools) because I was interested in learning more about women’s health.

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My job for her entailed handling email inquiries from women trying to understand

  • what was going on with their bodies
  • what content Bri had out, and
  • who they should see (doctors, PTs, etc).

I also worked on various projects like helping make distributable content for bone building exercises, and I collected research for her new topics. On occasion I did some help with audience outreach to get her free content out into the world.

In time though we amicably went our separate ways. She moved on to focus more on holistic health practices and less on women’s health physical therapy and rehabilitation specifically, and so I continued on in my own direction, which at the time mostly included prepping for my baby’s arrival into the world. Working for Bri was an awesome opportunity because not only is she the nicest, but I got to brush the cobwebs out of my brain about women’s health rehabilitation and really delve into the subject (if you haven’t checked it out already, her youtube is full of free videos of explanations and exercises that cover a gambit of topics like prolapse, diastasis recti, pelvic pain, etc. Check it out here).

Afterward having my baby, I had not lost the love for the fascinating field of women’s health, I merely needed time to rethink how I could enter the world as a professional, no longer coming from the physical therapy realm.

I had been contemplating the idea of becoming a postpartum doula for a long time, and I finally realized what I was missing in that thought process. My objective couldn’t be simply to become a traditional postpartum doula because I would always have to explain about my skin condition, that I’m not contagious, what that means for my services, and work around my own flares and down time. But in reality when I was thinking about my own limitations, I should have been thinking about who could relate to having them. This led me to thinking about those expecting, new, or seasoned moms that have to live with eczema or other chronic conditions (shoutout to all the spoonies out there!) while growing/raising a babe or two (or three or more), and what their needs might be.

It’s not uncommon for people with chronic illnesses to have higher rates of depression, and it’s not uncommon for moms to suffer from postpartum depression, so what about those unlucky ladies that get hit with both? How do they find a support system that bridges both gaps, knowing that some of their depression comes from living with an incurable condition, and the other from being steamrolled with new hormones and emotions as a new life blends into theirs? That is a demographic I feel has not been studied or served enough. And so, I have begun to slowly pull my own experiences (both personal and professional) to better understand and then serve this group. I have been working on merging three of my interests to accomplish this:

  1. postpartum education (e.g my postpartum doula course and my position researching and writing postpartum mental health pieces),
  2. community engagement projects (two in the works: one to help educate mamas of color who may face discrimination from the medical/healthcare world or not have access to it at all, and one about how to train churches to better serve new moms in their area), and
  3. volunteering more with the National Eczema Association. This helps me to be in the know about what policies are being created (or challenged), as well as what new treatments or practices are out.

I use these three directions to help understand my own struggles, as well as figure out how I might work to help mothers out there like me (or other parents/caregivers!). It also gives me more reasons to continually I brush up on healthcare policies, systemic support options, familial/community building techniques, measurable outcome scales, all manner of recent research and studies, etc, which I tend to like to peruse anyway.

I have also been exploring the other side of my interests- traditions and cultures around death. Soon I will be taking Alua Arthur’s End of Life training and learn how to best serve individuals and their families around their time of dying. I think it’s such a taboo thing that we really need to talk about more. The amount of people with traumatizing stories and feelings of regret around their loved ones times of dying is astounding, and historically many cultures prevented this by being present and accepting death as nature, not some scary thing never to be spoken about. As Alua says “talking about sex won’t make you pregnant. Talking about death won’t make you dead.”

I think talking about mortality brings up some important conversations (even just with oneself) about the relative value of our day to day decisions. Interestingly enough, many of my postpartum books now overlap with my study of death. I recently read Overwhelmed: Work, Love, and Play When No One Has the Time by Briget Schulte and it had multiple mentions of how mortality was regarded over the years, and how that was reflected in how we approach our day to day lives, including our aggressive work-above-all work culture today. The logic is, if you think about your mortality to a normal moderate amount, you make choices that are more centered around your mortality. We aren’t talking about the “YOLO” ideology, but rather decisions such as ‘maybe you don’t need to take that extra late business call that’s not really mission critical in lieu of spending time with your loved ones’, and that kind of logic.

Oh that reminds me- I did recently finish a class through Mothering Arts about how to create a community supported postpartum space that I really enjoyed. It offered lots of insight in how to welcome in new mamas as well as community “grannies” and draw-in local professional women to offer their expertise to the moms. My only rub is that I want to create a larger scale space than that demographic (though not necessarily a large number of people at one time). I want to create a space (maybe a physical community shop) that welcomes everyone is to have discussions, seek community, find aid… almost something that mixes time banks, death cafes, postpartum meet-ups, with a part-time bartering system, all wrapped into a welcoming looking shop. I get inspired by places like HausWitch though my target audience is slightly different.

Obviously my long term goals are still being constructed, but I think one day I would like to own this type of shop with my sister (who is paving her career in graphic design/UX and my best friend (who is a social worker), offering classes and discussions, innovative tech, and community services centered around the biggest times of change (birth/postpartum, and death). We also want to raise families together so working together would give us the time and space to figure out how to make it all work. ❤

On the book front, I’m currently reading Witches of America by Alex Mar which I’m finding so inspiring. It’s not that I want to be a witch per se, but I love learning about different routes of beliefs and what draws people to them, and Mar explores this topic so well.

Anyway, as the colder months approach, I’m in the hibernation phase of life again. Lots of reading, snuggles with the little one, obsessions with soups, teas, and decaf lattes. My family and I are moving soon, which is a new adventure on its own because we are finally leaving Massachusetts, but is a lot of mental overload on how to move across multiple states (any advice is welcome). The move might be hugely impactful on my skin too because I think my condition gets worse in the fall due to a mold allergy (and fall here is pretty moldy!). I’m actually friggin’ psyched to be moving- but more on that another day.

 

all posts, community, mental health, miscellaneous, nature/the environment

the night school (part 1)

I like finding free things to do online (21 days of yoga, weekly journal prompts, etc). I don’t always carry through with many of them, but I enjoy the challenge and the game of setting up something to do, and usually am drawn towards things that involved a lot of self reflection.

This particular project is called The Night School by Maia Toll. I am doing the “part-time” option, which means I will be focusing on the weekly writing prompts (because I don’t have the time or attention span to watch the discussion and ritual videos… I’m still not super into watching videos that require intense focus). But even so, just doing the weekly prompts includes readings from her book (see below) and some general context and discussion points. I look forward to seeing what comes of doing it for the “semester”.

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This week’s assignment was: What in the world feels alive to you and what feels lifeless? Why? Examine your preconceptions.

What feels alive to me? I think I define aliveness too literally, but the email also goes into detail about the energies of things which I find easier to relate to. When I was growing up in Maryland we lived near a small woods. The woods were cool because you couldn’t really get lost in them (it was fairly easy to run out into some neighborhood), but if you knew your way, you could walk through the woods to get all the way to the C&O canal without having to pass really anyone’s homes. I often went into these woods when I was annoyed or upset, or just when I wanted to bike/run through, and if it was getting later in the day and darkness started creeping in (as it always did in the woods before the neighbors since there were so many trees) I remember at some point I started talking to the woods asking for safe passage. I specifically would say the same phrase every time, in French, because I thought the language was older and thus more likely that the trees would know it. Now it’s also interesting because I never had the feeling that the woods were hostile or required me to ask for safe passage, but I always felt it deserved the respect of the question anyway, and that more likely the woods would protect me from something else. In other way, I never had anything bad or shady happen to me in the woods and I continue to visit it when I visit my parents.

Now living in the city where I do I have become much more anxious than I used to be. Part of it was working through my own neuroses of being a stay-at-home mom in a culture where that is very unusual (I am also a young mom in this particular city culture). But even as I work through that hurdle, I realize the city itself makes me anxious. It has such haphazard energy all the time. It is alway noisy during the day (July and September seem to be when all the road construction happens), but it’s also a tiny city that has narrow streets and crazy road patterns, and yet the same 1/4 mile strip of street will be shared with 3 separate road construction projects, 50+ cyclists who have to weave into car traffic to pass one another or to turn, pedestrians that no one can see due to parked cars, standing aside cross walks that have varying degrees of visibility (from electronically lit up to make shift single cones denoting the spot on the sidewalk where they should start to cross). The energy is impatient. People are constantly walking around, no smiles to spare (I often try to say hello to humans on principle and get a range of results). Though the speed isn’t always fast, the tempo varies abruptly as though the very act of having to engage with one another is a burden. And the chug of cars is never-ending. We have driven at all times and find that 3am to 8am is a pleasant time to drive on a weekend in the city. On a weekday, it’s more like 3am to 7am. The weather can be obnoxious, from sun beating down at all angles (it’s literally always directly in our faces when we drive in any direction in the morning) and the winds pick up strong enough to blow away our baby on account of the various wind tunnels created by lots of buildings and few trees. It feels chaotic and it often makes me agitated to encounter it. It took me a long time to realize that this pulse of energy existed and how it impacted me but over time it has become more clear.

Now that is not to say there aren’t pockets that are more peaceful. I keep finding some but the problem is they are hard to get too or fleeting in nature. For example, I jogged through the tree-part of the city to get to an open house for a toddler music class, and minus the fear of being late, the whole adventure was quite relaxing. It had the iconic early fall feel and the class was very cute. That kind of energy emitted a peace that I crave often, and as such, I’ll definitely be taking Fi back, but always by foot if possible.

Examining my preconceptions… well in a nutshell it would seem to follow the standard assumption of city = bad energy, and woods = good energy. But it could be argued that the reason I enjoyed my parents’ woods was because it was near enough to civilization that I never had to feel lost or in real danger. And it could be argued that there are cities that can exude a good time of peaceful energy, particularly ones that are not so jammed with traffic, have more explicit community, and dedicate more time to their green spaces equally across their land. And I know I personally wouldn’t enjoy living in a large woods all alone. I like people- or well, I like community. I think both extremes: alone in a large wood and emotionally alone in a dense city have the same energy to me, fearful. There is something I find primally terrifying about being alone. And not in a “I’ll have to do things for myself kind of way” but in a “no one will have your back if something goes wrong” kind of way. So resonant energies that feel good to me have to leak some kind of energy that feels communal. A crowded Boston T train doesn’t feel communal because everyone is looking out for themselves, usually annoyed to be on the train, and avoiding eye contact with one another, pretending they are alone while sandwiched like sardines. The idyllic memoirs of people traveling in European trains not so long ago had more of the communal feel, with older adults looking out for young children traveling alone, with space on trains to sit and eat, with an impetus to reach out and connect to your neighbor if for no other reason that to pass the time (and that was not unique to Europe, I just happened to have read a French memoir more recently).

Anyway, I’ll stop there for now. My brain has travelled off on to other things.

all posts, mental health

on acceptance and chronic illness

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

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

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

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

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

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

This condition also impacts my ability to sleep. Sometimes I’m kept up at night by my baby, but often times it’s my condition that does it; my skin going through thermoregulating issues or being triggered by friction, sweat, air temperature deviance, my husband’s body heat, stress, etc all irritating my body so I am either scratching or my skin is heating up and weeping, or cracking as it dries out. It’s a never-ending battle to not fear going to bed though I know I need the sleep, because I get so nervous about how uncomfortable the night will be.

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

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

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

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

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


Hey, if what you read seemed dated or familiar, I’ve been combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂 This post was written April 2019.

all posts, mental health

anxiety

The anxiety has a name

It is change

It is decisions

It is mortality

It is priorities

It is choice

But what if we chose wrongly?

Will we know?

Will we feel it deep in our souls?

Anxiety is not just unknown

It’s the future

Not the abstract

But the knowledge that we will butterfly ourselves to this place

And it will be final

But with finality will we find happiness in our choices?

Or bitterness of regret?

How can we know until we do it?


Hey, if what you read seemed dated or familiar, I’ve been combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂