Too Hot to Handle
“I’m dying,” I told Ron last July. Gastrointestinal problems left me bent at the waist, a hand over my belly. Migraines and sore and swollen joints kept me bedbound. Thrush and canker sores caused such pain when eating that I skipped meals altogether. I hid my arms and legs under long-sleeved shirts and pants to cover unexplained rashes and bruises, even when the temperature soared over 100 degrees. My autonomic and autoimmune systems were out of whack.
While making a smoothie one morning, a meal I could sip through a straw, the cold soothing the canker sores, I heard an interview on NPR's Fresh Air with Jennifer Senior, a staff writer at The Atlantic, who was discussing an article she had written about insomnia. When the interview switched to Senior’s account of living with long COVID, she mentioned mast cell activation syndrome (MCAS). It caught my attention.
Mast cells are part of the immune system and function to protect us from germs and pathogens. When triggered, they release histamines, which can sometimes cause an allergic reaction, from itchy eyes to anaphylaxis. It's unclear why certain diseases and syndromes cause MCAS, but after reading about the syndrome, I felt like I finally had some answers. An indicator of MCAS is simultaneous involvement of at least two of the following systems: respiratory, cardiovascular, digestive, and skin. That day, standing in the kitchen listening to Senior’s interview, I had an itchy rash on the inside of my right forearm, the painful canker sores, and I had been blowing my nose and coughing for months. I was dizzy, and the smoothie I was drinking was making me nauseous. I wondered, Why haven’t my doctors mentioned this?
I went to see an integrative doctor at Banner University Medical Center in Tucson, where I had been a patient for two years after blood work results revealed autoimmune issues common in long COVID patients. “I think I have MCAS,” I said.
“I am pretty certain you do,” the doctor said.
I was already taking several supplements for autoimmune issues, which didn’t seem to help at all during the summer. “Why hasn’t anyone told me about this before?”
“Because we are just piecing this part of the puzzle together. The good news is I can prescribe an antihistamine that should help with your symptoms.”
“Like Benadryl?”
“This is a more advanced medication. Take it at night, and you should be okay during the day.”
I explained recent food allergies, something I had never experienced before long COVID. “You can take Cromolyn Sodium thirty minutes before you eat. This will help dampen the histamine response to foods that no longer agree with you.”
Many of the symptoms I have had since getting malaria over thirty years ago, and I wondered if the release of histamines has been a major contributor to my decades-long health issues.
The doctor’s appointment was in late September. The monsoon season and staggering heat were behind us, and I was feeling better, which I attributed to the antihistamine. That was until June of this year.
It turns out heat is a major catalyst for MCAS symptoms, and I am still learning what is best for my mind and body during the summer months. I can take the physical symptoms: rashes, bruising, itchy eyes and mouth, headaches, bad belly, etc. What is hard are the mental and emotional symptoms. Some days I am too exhausted to put in a load of laundry or make a meal. I have given up on my daily writing sessions because I’m sick of beating myself up for not meeting deadlines. The apathy that nuzzles in close holds me hostage until I throw up my hands and go to bed.
Not all is lost. There are things I can do to have some semblance of a “normal” life. Getting enough sleep is nonnegotiable. Being indoors by 9 am and staying put until the sun goes down. Keeping stress to a minimum and saying no to all outdoor activities until the weather cools off. Staying connected with friends and family, and my writing community. And most importantly, living in a house full of animals who depend on me even when I don’t feel like getting out of bed.
I’m writing this on a good day, of which there are few this time of year. But here’s the thing. I’m not the only one who is managing chronic illness (and not always well). I’m also not the only one with long COVID, so if any of this sounds familiar, please reach out and let me know how you’re doing. I promise to listen.
It’s been two months since I felt well enough to be here in this blog space, and I miss you. Thank you for being a part of my writing life. It means so much to me.
