A long while back I came across this article called From IUDS to IVT – Designing for Women’s Health on medium a while back, by Emilie Lasseron. In a nutshell, she talks about the new innovations in women’s health and how it is important for creators in this realm to be mindful of their audience. Naturally I tried to pattern match this to blend into the eczema realm as well, to combine my two interests/where I’m at in life now.
Lasseron’s big 5 bullet points were to “design:
– for passive engagement”, which was where she explained how we have a culture where we don’t really think about fertility until we start trying. This is similar to what we see with eczema (with eczema being a negative thing that people don’t try but experience). People don’t really think much about it, until it starts to take over and disrupt their way of life.
– for myths, not just the facts”, in which she explained that we have to meet people where they are at, even if that means from a perspective that may be incorrect or grounded in myths. This is huge for eczema. From dispelling the idea that we have contracted some contagion, to explaining that no, coconut will not cure the skin, there are so many “old wives’ tales” and other myths to slog through that when talking to someone new to having eczema, it’s important to be able to calmly and concisely explain the basics and why some of the commonly heard remedies may be wholly ineffective.
– for the conversation women want to have with their doctor”, in which she described creating tools to help women feel comfortable getting their questions out to doctors and to help them reclaim their agency. Which is also CRUCIAL with eczema. Patients with eczema are already feeling terrible about their skin. And so it is so important that they can feel able to openly talk with their dermatologist and not feel judged or scrutinized for their choices, where they are coming from in their educational journey, etc.
– with as few assumptions as possible”, in which she talks about not assuming women know everything about their bodies (most of us don’t), and uses the example of a period tracker app that expected you to know your cycle length before you could sign-up (I never personally know how long my cycle is). This is like if there is an app made for eczema and it keeps requiring the patient to know exactly when the flare started, what we ate that day, how long we slept, did we encounter any new allergens, etc. It is hard to track all of these little life factors, especially if we didn’t think we were going to flare, or we are new to having to deal with severe eczema.
– with side effects in mind”, in which she talks about making products that allow women to talk about/understand other side effects, an example being an app that tells you you may be more constipated during the luteal phase of your period. This would be the equivalent of an app that gets you to talk about various symptoms and co-morbidities of eczema like the oozing or the flaking or the infections, the isolation or depression, etc, so that it would be easier to identify:
one, what stage of a flare the person is in, and
two, what is most common, and therefore important to address (like increasing rates of depression).
All in all it was a fairly quick read and highlighted a lot of the innovation that is and needs to continue to happen within women’s health (and could be extrapolated to what innovation needs to happen in the eczema world too) to allow for better healthcare and treatment.
Speaking of innovation, I entirely missed hearing about this event: Make The Breast Pump Not Suck, a hackathon that happened in Boston April 27th-29th last year. It was hosted to try to address not just pump technology itself, but policies around maternity leave, breastfeeding spaces at workplaces, what barriers to breastfeeding exist, how to build community engagement, and getting stories from different women about their experiences. There were also community innovators mentioned who are doing awesome things in the field of women’s and maternity health (see here), including one in Boston called the Neighborhood Birth Clinic! The group is trying to open a free standing birth clinic in Dorchester. The event also highlighted different independent innovators like Melissa Hanna who created Mahmee, a secure platform that lets providers coordinate healthcare of both the prenatal and postpartum stages.
My dream is that there will be hackathons and the like for innovations with eczema too, besides just the Eczema Expo. And hey, if not, maybe that’s what I’ll work to pioneer one day.
Today’s post starts off as a bit of a downer. I have been feeling a bit trapped lately.
First off (and I’ll need to go back and do some searching because I’m genuinely curious), of all the people out there going steroid-free/not on biologics who have eczema covering over 50% of their body (and all the concurrent fun symptoms that entails), did this degree of eczema impede or otherwise alter your life plans (specifically career goals and things of that nature)?
I ask because lately I have fallen into a rut where I feel like I am failing. I left a planned career behind because a continuously flare was deteriorating my lifestyle and because of the nagging fear that my flares would always be there holding me back, making me miserable in my field of choice (physical therapy at the time). So there I was, feeling grumpy, and wondering how others with severe eczema who work in health professions do it. But then I talked to my husband about my frustrations, which, to be fair were compounded by the worries and stress I’ve had with breastfeeding.
So let me foray into that realm now. In a nutshell, the current issue is that Fi sometimes has blood in her stool (poop) and most doctors tell me to use formula, in lieu of focused elimination diets. This stresses me the f*ck out because one, the pediatricians have been inconsistent in their reasoning. When Fi was less than 2 weeks old I was told to use formula because Fi wasn’t gaining “enough” weight (which is pretty subjective especially since their measurements haven’t been the most accurate… but that’s a rant for another time). Instead of teaching me about different ways to entice a baby to eat more or about potential reasons why she might not be eating, I was told to try pumping once to see how much I make in a sitting, and then supplement with formula with however much I pumped to make 3 ounces. The logic was clearly my body was failing to produce enough milk. So I pumped and only made about half and ounce and I diligently tried to feed her 2.5 ounces formula. You know what happened? She only drank half an ounce of formula and then didn’t want to eat anymore. The second reason I get stressed by this push towards formula now is that initially when Fi wasn’t eating I was told to eliminate dairy and soy from my diet. When I asked three doctors about how to reconcile the fact that formula (including the hypoallergenic ones) have dairy derivatives and soy I was told 3 different things:
Doctor 1. The hypoallergenic formula doesn’t have dairy or soy. But it does.
Doctor 2. It (this was around day 10) is more important for Fi to gain weight than whether or not the formula has allergens. That’s great and all, but Fi wouldn’t take more than an ounce of formula or breast milk at a time.
Doctor 4: This particular other hypoallergenic formula (being prescribed at around 3.5 months due to the blood in Fi’s stool) has hydrolyzed milk protein (basically pre-digested milk proteins, in that they are broken down so supposedly easier for the baby’s digestive system to handle), while the brand prescribed to me at 10 days was partially hydrolyzed. Okay sure, but then there was no mention of the fact that the third ingredient in said formula is still soy oil.
My complaint with this process is that the pediatricians have no advice about nutritional or dietary changes. Doctor 1 told me to give up dairy and soy, and then try gluten and eggs too if that didn’t work, but openly admitted to not knowing much about how diet affects breast milk or if foremilk/hindmilk imbalances have an effect. The same doctor told me that we had to keep getting diapers tested for occult blood (invisible blood in the stool). Doctor 2 was more like “look she’s a baby. These things happen. She’s gaining weight now so we are good.” And doctor 4 was like “occult blood doesn’t matter, we only care about visible blood”. I have a hard time trusting my baby’s doctors if they are all giving wildly different advice. Oh, and another point I have to make. I didn’t seek out 4 different doctors. The practice Fi goes to usually just sticks us with whoever is available so we have seen 5 different doctors/nurses there and gotten wildly different advice from each one. Doctor 4 I mentioned was a GI specialist, which we went to see as per doctor 1’s advice.
As for Fi’s inability to gain weight fast enough from day 10? She started gaining weight (still exclusively breastfed) after we had her treated for reflux, (which I had noticed because she made gagging faces whenever she ate, and doctor 3 confirmed my suspicions go be correct). After a few weeks, the reflux abated and she was fine on that front.
My problem with this process is it feels extremely similar to how doctors treat things they can’t solve, such as with eczema. I’ve gone to state-of-the-art facilities, told a dermatologist my background including about having horrible topical steroid withdrawal symptoms, and been either convinced or scared into using steroids again (the scaring came from being told my organs would all be inflamed if I didn’t use steroids). None of them addressed diet, none of them offered any alternatives to steroids, though one did say if steroids didn’t work we would move to cyclosporin (an immunosuppressant drug used for people who get organ transplants so that their body can’t reject the new organ). That option was on the table so long as I was ready to get frequent check-ups for my kidney* to make sure it was functioning well, and so long as I knew I would be at risk for getting sick more easily. It felt like an extreme option to say the least.
*(I previously wrote liver but meant to write kidney!)
This constant push towards formula without trying less invasive means first, disturbs me. Formula and breast milk are very different. Breast milk gives Fi a better chance of not getting eczema (which she sorely needs given that both Jake and I have it) as well as helps her fight off colds by producing antibodies when either one of us is getting sick. Breastfeeding also releases oxytocin and other calming hormones to make us both happy mellow and sometimes sleepy lovelies when I nurse her (a nice boon!).
This is not to say I wouldn’t use formula if I knew it would solve her problems. But so far the evidence indicates that it may not. Her weight gain issue resolved without formula, despite it being implied over and over that my body was to blame for the issue in the first place. She could only be having weight gain trouble if I was underfeeding her, because my supply was too low, right? Imagine if I hadn’t thought to inquire about her reflex symptoms.
And if doctor 2 is right and this is stool issue just part of her developing digestive system, then we have cut her off breast milk for no reason. Plus the formula doctor 4 prescribed? It’s so expensive that there’s a black market demand for it, despite it being pretty much identical to the formula doctor 1 prescribed. What?
So anyway I have this constant lingering fear that my body is poisonous and killing my baby, so therefore I’m failing being a mother, and I can’t work first because of skin and now also because of my tenure as a failing mother, so I’mm failing as a working adult, hence the added stress of being a useless human.
I should probably qualify to say that despite Fi’ s ever fluctuating stool contents, she is quite a happy baby, still slowing gaining weight, and hitting milestones as she goes. She is also a crazily active baby, which may be the reason she gains weight slowly as she does spend cumulatively hours a day flail kicking whatever comes her way and smiling about it.
I don’t know. I guess the problem is that I straddle unknowns so often that they are starting to get to me. It just sucks to feel like my body is constantly to blame. It feels like my skin is a fluctuating erratic b*tch and now my breast milk is too?
Another qualifier I have to add. After all these diet changes I’ve been doing, I have noticed that my skin is much less terrible this cold season than previous ones. So clearly something I’m doing is helping a little. And the same can be said about Fi. The blood on her stool has lessened so much from when we saw doctor 4 and I just started avoiding rice (which I ate all the time) and oatmeal (which I realized I wasn’t eating notably gluten-free ones (oats are commonly contaminated with wheat during processing)) and cocoa/chocolate (which has caffeine and historically I’d eat a lot of it at one time). But the other problem is all these factors take time. There’s always potentially a quick fix medication to mask the symptoms, but to actually suss out what works and prevent it from happening again takes time. And what’s more nerve-wracking then sitting around waiting to see if your changes help or hurt your baby?
And then I’ll think, well maybe it’s not my diet at all, but the fact that I have so much systemic inflammation living with eczema, and that’s affecting Fi (despite not being able to find scientific proof or any doctor that believes that that happens). I don’t know. There’s no worse feeling than the lingering doubt and insecurity that you are f*cking up your baby.
Anyway that’s the basic hum of stress I have undertoning my life lately.
To combat that hum, I have been trying to augment lived with things I know have always made me happy and continue to do so: books, and more specifically, library books. I am forever taking out book after book on all manner of subjects, to consume like it’s my calling, like ants to sugar. To this day I know I would love working in a public library; I have so many ideas swirling in my head about improvements to various existing ones to help further user accessibility and build community. I just love libraries and books. So much information right there, and for free! You don’t need WiFi or a smart phone or anything. It’s a relic of a bygone era that I think is so important for today, as it provides so many underappreciated values. You can go to most libraries, in most towns, without being a patron, and sit down and enjoy their services including free internet. Lots of libraries have free events from book clubs to baby hangouts to beer nights. Every library has its own history and is usually shaped by its community, so you can get a glimpse of what a town is like by just walking through its library doors. Plus most libraries have interlibrary loan systems where they are partnered with other libraries to make sure they can continue to supply their community with a wide array of materials. There are also some funky libraries out there including Bookmobiles or libraries with novel services like American Girl doll rentals or art and tech supplies (like with Maker spaces). Libraries are actually one of the coolest inventions mankind has created. I just can’t get over a system that lets me borrow so many stories (I think I currently have 11 out, 7 on their way through the ILL system, and 21 more on my radar to take out once I make a bit more headway with my current batch).
I frequently find myself singing to Fi (completely randomly as I haven’t seen this show in years), “Butterfly in the sky. I can fly twice as high. Take a look, it’s in a book. Reading rainbow. Reading rainbow!”