With everything that’s been going on, I completely forgot to note that it’s been a year since I’ve been off topical steroids!
It was about this time last year that I found out I was pregnant and thus decided to give up topical steroids cold turkey. I had read that using them during a pregnancy could result in developmental delays of a fetus (if using too strong a dose for too long, or over too large of skin surface area), so instead I decided to completely cut it all out. Long story short, my eczema has been complicated by topical steroid withdrawal since that point, like I’m on some sort of a topsy-turvy roller coaster ride.
In fact, last night I had to have Jake cut my wedding band off my finger because my finger got so swollen and neither ice nor lubricants helped bring swelling down or get the ring off respectively.
It was a sad and frustrating moment where I realized that despite all my perceived healing, I still cannot even wear any jewelry (minus my tragus piercing, which I think is only fine because it’s an area of the ear that has more cartilage than skin or nerve endings).
Necklaces, earrings, bracelets, everything else tends to bother my skin (or be scary to wear like in the case with the ring yesterday).
I’ve also been struggling with bouts of intense nighttime itching, which has resulted in me scratching myself open more, (even when wearing gloves) as I have less mental fortitude to prevent myself from doing so late at night. The worst I’ve done so far was on my leg the other day, which definitely warranted some wound care attention.
I remember as I scratched that I felt it start to weep but it was still so excruciatingly itchy, almost as bad as when I get hives, that I couldn’t stop.
So what’s a girl to do especially with the winter onset and the heater constantly running? Make a skin plan of course!
My current plan is as of now comprised of the following steps (in no particular order):
- Get a new dermatologist (we’re moving soon) and make sure to request bloodwork and a skin prick test (the latter if my back can stay flare-free enough to do so)
- Research about best emollients and supplements that include essential components for skin and skin healing (like ceramide and filaggrin) and confirm with new derm
- Consult an herbalist to work in more herbs into my diet, bath, etc and to help address my sleep issues more naturally
- Figure out more about the endocannabinoid system and what else helps it besides CBD oil since said oil is quite pricey
- Take the dermatology technician certificate to get a better clinical understanding of dermatology and what doctors think (without having to go to med school and then through a dermatology residency)
- Get myself moving more again. Brave the cold and go for more walks and seriously get back into intense yoga because it helps
- Avoid all added sugars including honey and maple syrup until my inflammation has dissipated a bit more
- Contemplate seeing a psychologist to address my excoriating disorder and stress issues
- Fix my diet overall which includes following seasonality, eating a more diverse array of vegetables, and keeping track of what I eat too
- Read more books on eczema including ones whose contents I am on the fence about
- Learn more about newer treatments including dupixent and eucrisa
- Get my life together enough that I can participate in calls in the online eczema community program I am involved with
There are probably more pieces of my plan that I’ve forgotten and a better step-wise way to present them but I’m too worn out to care right now.
Sometimes the constant skin drying out or the fear that what I ate is hurtng me, or the annoyance at having to adjust so many commonplace day-to-day activities like how my husband can touch me or how I can hold my baby really get to me. I can see why it’s so easy to turn to a medication that can quickly get rid of symptoms, yet for many of us, our skin conditions have become the result of such medications, which feels like a betrayal of the modern medicine world, like science has failed us.
I need to do a post on topical steroids soon, and how they work, and then read and talk about how the newer medicines on the market work and how they are faring. There is no miracle cure to illnesses and quick acting solutions can come with a price. It seems more and more important to show that there will be some level of struggle involved for those unlucky enough to be susceptible to this kind of condition.