Photo by Kat Smith
I disappeared again. I have no excuse other than some health issues landed me with a total loss of concentration.
I disappeared again. I have no excuse other than some health issues landed me with a total loss of concentration.
What started as a "I won't write during vacation week" turned into a three-week ordeal of me battling with myself to even journal half a page daily, which rarely happened.
I'll be straight with you: things have been rough. But I also found a partial way out. And, also, finally, believe we discovered the missing piece in my health puzzle.
I was having systemic, allergic-like reactions for years, primarily skin-related issues which essentially drove us out of Florida and to Seattle. I had:
- skin flushing
- a burning sensation
- raised, hard bumps
- skin tenderness
- hives
- blotchiness
All instantaneously from any form of heat and sunlight. And with sustained-longer-than-three-minutes of exposure (in Florida), I’d develop blister-like markings/lesions.
It really came to a head just before my Celiac diagnosis. And contrary to what I expected, a year and a half after going strictly gluten free, the skin issues never resolved. Like with the chronic gut issues, we just assumed both were permanent fixtures from the years of malnutrition and lack of vitamin absorption caused by damaged villi due to the unmanaged Celiac.
I couldn’t fathom that it might be an entirely different condition altogether.
Thankfully the move to the more mild climate of Seattle — plus the exponentially improved medical system — put a nice, cozy blanket over my problems to a point where I didn’t think about them for a while. I just avoided being outdoors on the rare days the temperature would raise above 85°F. (Enter: climate change, and I believe those always-under-75-degrees, mild temperatures have become a thing of the past….)
Sure, I noticed that when I had alcohol, my skin would grow hot and red and tender — sometimes hives making a cameo — but I never suspected they were related to anything other than “permanently damaged villi” in my intestines.
Fast forward to mid-2019, our family attempted veganism to support our youngest kiddo’s desire to never consume animals again. This is when things made a hard turn for the worse. I began developing shortness of breath after consuming chickpeas and lentils, and within a week I had an anaphylactic response to them.
Still, I just cut out beans and went on my way.
Then at the start of the pandemic, with the heightened stress and uncertainty I’m sure we all experienced, my body decided it had enough.
I assumed my tiredness and brain fog and difficulty concentrating was because my routine was trashed, and all my kids were home constantly. But then I started having gut pain and discomfort, and assumed I was being gluten-contaminated by store-bought meats, fruit — really, just about everything. Normally trusted restaurants we got take-out from could no longer be trusted, and I could only seem to tolerate eggs, gluten-free toast (dry…), and plain, skinless chicken.
My sinuses non-stop drained, and my eyes and nose were always itchy. I developed chronic acid reflux and tachycardia after eating, getting warm, from sunlight, et cetera. There was a seemingly constant skin "crawling" sensation, my feet and ankles swelled up nightly, and my skin sensitivity to everything increased so much that I could no longer step out on the patio anymore — the only outdoor time I had pre-vaccines during the pandemic.
By the time I got my first Pfizer dose, my doctor demanded a full labs workup to see what might be happening to me.
A week later, I was binge-listening to The Chronic Couple podcast, which I found through one of my other Autism podcasts. In one of the episodes, the wife of the husband-and-wife duo mentioned that she was diagnosed with something called MCAS (she pronounced it “em-cass”). And as she described it, I nodded along, springing up tears, thinking this is exactly what I'm going through.
I did some research and brought it all to my doctor who promptly ordered a slew of additional labs, as well as a had me go on an incredibly restrictive low histamine diet. (Basically just eggs and gluten-free toast for breakfast and lunch, and a chicken thigh or chicken breast sans any seasoning beyond salt, which was about all I could tolerate before anyhow.)
After four weeks on the diet, I was finally starting to feel a little better. My gut pain lessened, and my sun intolerance became less intense. My skin, overall, looked less blotchy, and the regular face and neck flushing I suffered from for nearly thirty years was almost all cleared up from being a permanent fixture on my face; although I still lit up firetruck-red if I even so much a giggled.
We scheduled our family vacation for the week after my baseline lab work and skin patch test, and in preparation I bought Zyrtec and Pepcid (H1 and H2 blockers) to help ease the blow of bombarding my system with histamines again on the trip.
Although they helped tremendously, I noticed a few of my cutaneous issues broke through the antihistamine barrier set; and some gut pain returned at the tail end of the vacation week.
After returning from vacation, I had to quit taking the blockers — which terrified me — in preparation of the next lab test during a flare.
The day after quitting the blockers, all of my systemic issues returned ten-fold. I went back on a partial low-histamine diet just to lessen my misery. That helped a little, but I was desperate and scared of the full-fledged flare needed to properly test for the next round of lab work.
Long story shorter: I had another doctor's visit before getting the final (hopefully) round of lab work done last week, and we're both convinced this is, indeed, Mast Cell Activation Syndrome (MCAS).
Now, I'm back on the H1 and H2 blockers, and a mostly low-histamine diet again. And I’m finally sitting down to write after three weeks of feeling absolutely incapable.
And now, hopefully, for the first time in decades, we finally know what's been causing the bulk of my health and skin issues.
It feels good to be back. I hope it lasts.
My best,
My best,
Sara
get the | Content Strategy Planner
support my work and | buy me a coffee
visit the website | segwrites.com
And here are 5 more things:
- What even is MCAS? (Healthline)
- It took me a few weeks (with everything going on), but I finished Winter In Paradise by Elin Hilderbrand, and started reading the second book in the series: What Happens In Paradise. It took me a bit to get into the multiple perspectives, but I’ve grown to like it.
- How did we get so stuck on here? (NY Times) On our complicated relationship with social media. (I appreciated this more as someone who was implored by an agent to get back on social… Ugh.)
- 2020 was the year of lost friendships. (Harper’s Bazaar)
- “It is health that is real wealth, not pieces of gold and silver.” —Mahatma Gandhi