It’s currently 3am and I’m awake despite the little one actually having been asleep since 830ish.
“Why on earth are you awake?”, you may be asking yourself, and rightly so.
Well let me tell you, internet reader. I am hot.
Now though the ambient temperature in the room feels cool, I know I set my thermostat a bit high (in my defense, with the skin disorder I’m usually always freezing, and the baby likes it warm too). However, I am not sweating. I’m just really warm. Warm enough to sleep in just a t-shirt and underwear, which I haven’t done since before my skin declared mutiny on my body (circa 20013?).
So as I’m over here pondering my existence in a semi-lucid state at 3 in the morning, the question that keeps popping up on the forefront of my mind is: this heat, what does this mean?
What does this mean? I’ve got a few theories.
My skin has shown an unprecedented amount of healing lately. I have soft skin on my face, stomach, back, and thighs. Perhaps I have done the majority of my topical steroid withdrawal pemance and am finally seeing the results, aka having skin of normal thickness and elasticity and with the ability to retain heat and moisture. Maybe. Or, maybe,
I have finally hit the point where, despite still breastfeeding (which can delay this), my hormones are kicking back in, and I am soon to rejoin the ranks of menstruating-aged women. In which case, hormones could be the culprit for my heated sleep body. Or, perhaps,
My circadian rhythm is so butchered from having to wake up at all manner of times during the night shift for the last 7 months (more if you count pregnancy months too) that my body doesn’t know what to do with un-externally regulated sleep interruptions, and so in a desperate attempt to keep its new status quo, it’s driving me awake via continued thermoregulation fluctuations. Maybe that’s it.
Or maybe it’s some culmination of the three of those things because as is often the case with complex systems like humans, we don’t always have a simple solution.
At any rate, I’m enjoying the fact that my little one is getting so much sleep, and that I’m getting some silky smooth patches of skin. I’m not stressed and as I am awake I am making sure to hydrate, so I’m sure in time I’ll learn to sleep again. So c’est la vie et bonne nuit (that’s life and good night).
Today’s post may feel a bit out there, but that’s why it’s also nestled under my “miscellaneous” category. So, having absolved myself of all guilt for anyone who misinterprets this post as hard fact, I begin.
I recently saw the term ‘seed cycling’ used on social media and became intrigued as to one, what it meant, and two, what benefit it had (if any).
A quick Google search led me to both answers. Seed cycling is somewhat literally what it sounds like (although my first guess as it was 4am as I wrote this, involved interpreting cycling as bicycling). You cycle between seeds in your diet, consuming specific ones at specific types during your menstrual cycle (and supposedly it can be use for peri-menopausal and post-menopausal women as well).
Anyway, the theory is that a menstrual cycle is most naturally working if it is within the 28-day cycle, and anything else indicates some sort of imbalance of estrogen. The seeds chosen during the two phases of the menstrual cycle (when estrogen is decreasing and when it is increasing) are chosen specifically to help balance out the estrogen in each phase to allow the person to resume the natural cycle duration.
At this point you may be wondering why am I posting about this on my eczema blog? Well, you may recall from my post on pregnancy, that one of the factors believed to provoke eczema in pregnant women is the surge of estrogen. So my hypothesis is that if one’s cycle is off, and they experience larger ranges of estrogen surges during phases of their cycle, perhaps that would increase the intensity of an eczema flare.
Here’s a quick overview about the menstrual cycle (I previously worked as a women’s health consultant, so I both enjoy this kind of knowledge and could use the refresher myself). We have 4 phases: menstruation, the follicular phase, ovulation, and then the luteal phase.
MENSTRUATION – This is the phase in which the lining of the uterus (or the endometrium), which has thickened over the month, comes off and there is bleeding from the vagina.
FOLLICULAR PHASE – This phase starts on the first day of menstruation. The pituitary glands, triggered by the hypothalamus, release follicle stimulating hormone (FSH), and FSH in turn causes the ovaries to release a few follicles, each of which has an egg. One of these follicles’ eggs will start to mature, while the others die (around day 10). The uterine lining starts to thicken during this phase too due to follicular stimulation. The follicular growth also causes a surge in estrogen, which the body compensates for by the hypothalamus releasing gonadotrophin-releasing hormone (GnRH), which gets the pituitary gland to release lutenizing hormome (LH) and FSH.
OVULATION – During this phase, the high levels of LH triggers the release of the mature egg from the ovaries in two days. The egg is propelled by little hair-like structures through the fallopian tube into the uterus. Once there, it can survive for only about 24 hours. During this process, the egg has “hatched” out of the follicle, and the follicular remnant that gets dragged along outside the egg becomes the corpus luteum. The corpus luteum releases progesterone and a little estrogen, a mixture that helps keep the uterine lining thickened.
LUTEAL PHASE – During this phase the corpus luteum releases progesterone and a little estrogen, a mixture that helps keep the uterine lining thickened. When no pregnancy occurs, the corpus luteum falls off and dies (around day 22), causing a drop in progesterone. The progesterone drop triggers the uterine lining to fall off (aka menstruation), hence the cycle repeats.
So how does one do this seed cycling, you ask? Well, during the follicular phase (day 1 when you start to bleed to day 14) you take a daily dose of 1 tablespoon of ground flax/pumpkin/chia seeds. From days 15-28 you take a daily dose of tablespoon of ground sunflower/sesame seeds. That’s all there is to it.
But why is this supposed to work? I couldn’t find any rigorous studies on seed cycling, but came upon a blog post written by a naturopathic doctor (Dr. Lindsey Jesswein). She explains that the seed hulls have chemicals called lignans, which help “modulate hormone pathways”, and the seed oils (made of omega fatty acids) help “provide the building blocks for steroid hormone synthesis”. Jesswein then describes each seed (minus chia) a bit more by what they provide:
Sunflower – vitmin E, linoleic acid, magnesium, potassium, zinc, calcium
The Herbal Academy (which was how I came to Dr. Jesswein blog post) goes into a bit more detail about the various benefits of each of these seeds and provided studies, but noted that the information was on individual seeds and not their impact with seed cycling.
A few of the studies they included (and some additional ones I found) found that:
Overall the evidence of large changes for the menstrual cycle is not huge, but at the same time, it generally doesn’t hurt to consume seeds in one’s diet so it may be worth trying if you want to play around with your nutrition (though always seek advice from a medical professional first, especially if you have a specific condition you are trying to treat!).
I’m curious to apply seed to myself so I might give it a trial for a few months and report back. Maybe. I’m also incredibly fickle, so probably not. I generally eat flax anyway with breakfast and the like, but I wouldn’t be able to notice if there were any changes because I’m still breastfeeding and thus not getting my period anyway.
Also I do understand that engaging in many different eczema projects simultaneously results in confounding the data as to which project individually helps my eczema, but it is my belief that eczema cannot be managed by just one miracle solution (though diet is a huge one) and so enacting multiple positive changes and approaches, so long as they are sustainable to myself lifestyle, I view as being the most maximally beneficial.
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)
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)
acupuncture (including herbs, cupping, and massage)
phototherapy (clinically done in light boxes, and just being in the sun)
sleep aid pills
yoga, meditation, and deep breathing
coconut and sunflower oil
bleach, epsom, and apple cider vinegar baths
collagen powder (edible)
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.