A guest post from Kayla…
It’s my turn to share health news. I’m ok. I’m at the start of a long journey, but honestly, I feel good in a lot of ways. This is going to be a long post. And if it feels really twisty and turny, it’s feeling about right.
I always have been described as a little delicate. Not sickly, necessarily, but always overly sensitive and a little uncomfortable. It’s hard to pinpoint when I progressed from being delicate to being sick. It’s been a rough few years. Losing Dad, and his illness before, was awful. That time overlapped with my husband and I trying to conceive. In fact, I had surgery for endometriosis on the same day Dad had his lung surgery. From there we lost my dear friend-cousin Jody. I had my son in January 2020.
I eventually noticed that I never got better after we started trying to conceive back in 2018. I never quit feeling tired after my first trimester of pregnancy. The carpal tunnel that started in pregnancy lingered on and was joined by joint pain and unrelenting fatigue. I suddenly couldn’t remember the last time I exercised or watched a TV series with Spencer or cooked a great meal.
This all came to a head earlier this month, but I didn’t know it at the time. I noticed a “bug bite” and mentioned to Spencer how strange it was that I had them on both arms and that they were in clusters. They were gone by the next morning.
The next day my leg blew up with what I now understand were hives. I was in such pain and so concerned that I considered going to the emergency room. My sisters told me to try Benadryl first and the welts suddenly disappeared.
From there I had hives every day. They started small and through the day became completely painful. I would hold off on Benadryl until I made it through my work day, then take Benadryl, and they’d disappear.
Meanwhile, every allergy I ever… had acted up. I couldn’t wear jewelry, my carpal tunnel became unbearable, I felt dizzy when I stood up, and I didn’t have the energy to sit upright for a whole work day. I could only wear cotton clothing, nothing tight, and no tags. I even reacted to toilet paper.
A week after the hives first appeared I had an anaphylactic reaction to my supper and went to the ER. I was put on a high dose of Prednisone. The steroids worked at relieving the hives but I was completely wired and had every side effect a person could expect on them. An appointment was made with allergy and as I tapered off the steroids I couldn’t take antihistamines because of my upcoming testing. It was a truly miserable week.
When I was finally able to see the specialist, he used the back of his pen to lightly draw a shape on my arm and back. Sure enough, it became welts after a few minutes. He explained that indicated dermatographism. This is almost always a sign of Mast Cell Activation Syndrome.
I was also skin scratch tested and found to have allergies to some trees, weeds, and grasses, as well as mold.
MCAS is difficult to test for because mast cell levels change so quickly. The test they ran came back negative, but now I have a standing order to have blood drawn between 90 minutes and four hours after my next flare.
Obviously, then, the main medical concern is anaphylaxis again which is especially scary because anything can set it off. Mast cells are not necessarily “bad guys.” They fight off everything from germs like they are supposed to, but also everything else that causes stress from fragrances in the air to hot weather to strobe lights. The cells release histamine but there is such a buildup of histamine in my body that I have responded with hives and, eventually, anaphylaxis.
I feel like a ticking time bomb. Which is not helpful on the stress reduction front.
The good news is the medical interventions are working. I am on a high dose of antihistamines and have not had hives since I started them. The fatigue is still terrible but I don’t know if that’s related to the medication or the flare.
It can take a long time to recover from a flare. In addition to the medication, I will be working on other ways to calm my body down. I need to work on a low-histamine diet which unfortunately rules out all fermented and yeast foods, including wine and beer. I have supplements and probiotics to try. I need to work on reducing stress and other triggers.
It’s a pretty big bummer. We are farm-sitting this week and I would have loved to work from my laptop on the porch swing but I can’t do the outdoor allergens. I’d love to swim in the endless pool but I can’t do the chemicals. I am down to bare-bones hygiene products (no makeup or waxing for now) and replaced what I have with hypoallergenic versions. When we get home I’ll be boxing up our cleaning products.
Physically I feel pretty awful but mentally I feel pretty optimistic. I’m so grateful to have the ability to work from home and control my environment. There’s not a chance I could handle teaching right now. I’m grateful to afford the overhaul in hygiene and cleaning products. I’m grateful for my access to healthcare. It also feels good to have an answer for my plethora of quirky symptoms, even if it’s not a very convenient one.
Like I said to my family, it’s going to be a long haul to get healthy, and even so, in the future, I will have to be aware of MCAS triggers. I want to still be invited but I don’t want people to go out of their way to accommodate me. I will probably bring my own food and toiletries. I will probably wear a mask.
If you made it this far, thanks for reading my novel! I wanted to get it all down in one place because it all feels so crazy. Mom’s readers have also been so resourceful in the past, so I would love any advice or guidance you have.