all posts, mental health

on acceptance and chronic illness

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Photo by Pixabay on Pexels.com

I’m combining all my other blogs’ content to this site. Please bear with me as I post older content.  🙂 This entry was written in April 2019.

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 dont 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 neverending 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.

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all posts, eczema

where’s my glow? (pregnancy with eczema)

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Today I decided to dig a bit more into the world of eczema for us pregnant folk.

I started by watching a podcast done by Abby Lai (of Prime Physique Nutrition) in which she talked with Dr. Peter Lio (he’s done a few National Eczema Association webinars). Link to Abby’s podcast is here.

The major points were:

  • It’s not really understood why but about 1/2 of pregnant women have worsened symptoms and 1/2 have bettered symptoms. Dr. Lio likened it to how some women get nausea during pregnancy.
  • You can have a flare in one pregnancy, but not in the next. Also you can have changes in skin between trimesters.
  • Dr. Lio mentioned a few itching conditions that can occur during pregnancy such as cholestasis (when liver and gall bladder slow down their bile flow which causes a terrible itch), atopic eruption of pregnancy, PUPPP (or pruritic urticarial papules and plaques of pregnancy which usually occurs during the 3rd trimester).

He and Abby then talked about treatments used during pregnancy including such as:

  • how topical steroids are okay but not most potent ones. The goal is to keep body surface area that you apply the topical steroids to relatively low (so not WHOLE body), because topical steroids go in blood if they are used long enough or over large surface areas.
  • light/phototherapy
  • Benadryl and other anti-histamines
  • wet wraps, icing, moisturizers (see my post on products I’ve tried here)
  • anti-itch creams in small amounts (such as camphor and menthol)
  • natural oils like coconut and sunflower seed oil (if not allergic)
  • dilute bleach baths (he also mentioned a recent paper shows it’s anti-inflammatory and anti-itch directly, as well as being antibacterial)
  • topical vitamin B 12 (water soluble) – pink magic

The takeaway advice he gave was don’t be afraid to use medicine so long as you have a doctor helping you.

I was having trouble finding full access studies but I did stumble across a PDF from the National Eczema Association about getting pregnancy, skin tips during pregnancy, and after pregnancy advice. It also talked about the likelihood of the baby getting eczema and things to hopefully prevent it. The same PDF also mentioned that avoiding soap can also help decrease the disruption to the skin barrier (which is not something I’ve heard said often; normally it was just to not use antibacterial soap specifically because the bacteria can adapt over time and we’ll be stuck with pathogens that can’t be killed as easily).

In regards to when the mothers are postpartum, such as how there can be challenges with breastfeeding if the mother develops eczema around the area. In that case, the study said low to moderate potency topical steroids can be used so long as they are washed off before the next breastfeeding.

Updated: The National Eczema Association posted a new article May 2018 called Oh baby! Eczema from pregnancy to menopause that goes into more detail about why women may experience more incidences of eczema during pregnancy. It mentions how a researcher at the University of California-San Francisco (Dr. Jenny Murase) found that when a woman is pregnant, her body shifts from Th1-dominant to Th2-dominant immunity in order to protect the fetus (because Th1 attacks foreign material that get into our cells, aka it would attack the fetus since they have half of the father’s cells). Th2-dominant immunity means the mom’s body attacks allergens and whatnot that are flowing around outside her cells, protecting the fetus, but not helping when it comes to eczema. The blog post said that the shift from Th1 to Th2 is driven by the surge of estrogen. Perhaps that is also why women generally have higher rates of eczema than men? Unfortunately I couldn’t find the study that the NEA article cited so I can’t follow up with more, though I did find an abstract from Dr. Murase et al, that mentioned how psoriasis tends to improve during pregnancy correlating with those higher estrogen levels… so maybe one of the immunity-linked causes of eczema and psoriasis are opposite in origin?

My personal experience with being pregnant while having eczema has been that I have to be more mindful about how I treat my eczema relative to general lifestyle changes too. For example, no longer can I go and drink tons of kombucha (due to varying alcohol content and the light risk of bacteria), enjoy whatever random herbs I feel will help me heal, go jump into a hot yoga class unprepared (because getting dizzy affects another being besides myself), eat whatever fish I want whenever (I am a tuna fan and enjoy sushi when not pregnant), run and jump into a hot springs all willy nilly, etc. I have to be more mindful about sharing my body and not just jumping into whatever new protocol or thing I want to try out to help my skin. I can’t decide to just go on a particularly aggressive dietary change that involves caloric restrictions or drastic nutritional adjustments.

That being said, being pregnant has also had a lot of changes that might be helping my skin. In my first trimester I was very sugar and meat adverse, so I ended up eating a lot more veggies. When I wrote this piece in my third trimester I tended to crave veggies as a way to keep my guts feeling good, and to keep indigestion at bay. I also ate smaller meals more frequently, and didn’t really accidentally binge eat big meals mindlessly, which was great because it meant that my body wasn’t overtaxed in digestion (which meant more time to heal the skin!). Pregnancy had me feeling a bit more tired (and much like with a flare, also avoiding high intensity activities), so I tended to stick to lower impact, longer duration activities like going for walks for miles or remembering to get in 100 modified push-ups a day.

Anyway, I’ll stop there and leave you with a current photo of me when I wrote this post. I was about 31 weeks pregnant now and you can see my arms and hands in particular were especially topically-challenged.

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REFERENCES

Crane, Margaret W. Oh, baby! Eczema from pregnancy to menopause. National Eczema Association, https://nationaleczema.org/oh-baby-eczema/. Accessed 30 Apr 2018.

Lawton, Sandra. “Pregnancy and eczema”. Exchange, https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=20&ved=0ahUKEwj3hO2D-9jaAhWmc98KHRNhAusQFgjGATAT&url=http%3A%2F%2Fwww.eczema.org%2Fdocuments%2F711&usg=AOvVaw2fS6lrX7fvyosOV1imHE4p. Accessed 30 Apr 2018.

Murase JE, Chan KK, Garite TJ, Cooper DM, Weinstein GD. Hormonal effect on psoriasis in pregnancy and post partum. Arch Dermatol. 2015 May;141(5):601-606.

Silverberg JI, Hanifin JM. Adult eczema prevalence and associations with asthma and other health demographic factors: a US population-based study. J Allergy Clin Immunol. 2013 Nov;132(5):1132-1138.