In my early 20s I wrote for a fledgling arts newspaper here in St. Louis called Intermission Magazine, and one of the columnists was a New Age devotee named Jeannie Breeze. I don't know if 'Breeze' was her real name or a pen name chosen for its metaphorical quality, but my legal last name is Brunette, which is a family name, so anything's possible. Jeannie was a real character; she always wore a purple knit beanie (yes, even in summer), and she fluffed auras for a living when she wasn't penning columns.
Jeannie once pulled me aside to say she "sensed" the physical pain I was in, and that surprised me because I didn't think I showed any outward signs. Maybe I did and didn't realize it (I'm not known for my poker face), or maybe Jeannie really was "in tune" with this kind of thing. But either way, she did me a real kindness: She gave me a poem called "Putting the Pain to Sleep." In it the speaker sang a lullaby to her pain, as if singing a child to sleep. It was maybe a little hokey for the edgy youth I was at the time, or at least fancied I was, but it helped.
I've thought about that poem a lot over the years, and I've tried to put to sleep many a pain.
Back then I had two diagnoses for the symptoms I'd experienced since high school: 1) endometriosis and 2) interstitial cystitis (IC). Neither is very easy to talk about. Both center on inherently "embarrassing" parts of the body. The quest for the diagnoses themselves was painful and invasive, involving catheters and laparoscopic cameras and sample pieces of my internal tissue removed for examination. During one particularly painful procedure, a nurse assistant said:
"You just have to ask yourself, Why me? The answer? Because you can take it."
I did not punch her in the face, but maybe I should have.
When a doctor wanted to put me on a drug that would essentially throw my body into 'fake menopause' in my early 20s, I got a second opinion. The new MD tossed out the endometriosis diagnosis but doubled down on IC. There's no cure for it, but we tried all of the available treatments. None of them worked.
Now I'd like to cue a montage sequence spanning more than a decade. It shows me living, laughing, and loving while simultaneously struggling with discomfort and at times acute pain (because that's what we do, right?) I want you to imagine the last UTI you had, how that SUPER sucked for you. Now imagine that's your life. There's no antibiotic for it, no moment of relief, just persistent pain and a blur of time spent in the bathroom.
Which is not to say I didn't have some nice periods of decreased symptoms, and even for brief spells, total remission. A good diet and exercise seemed to help, as well as stress-reduction. Exercise and diet were always easier to control than stress, though. Ya feel me?
Complicating the quest for a cure were some other health issues in the form of "allergies." Throughout childhood, I had awful hay fever, and I also often reacted to food with severe heartburn and systemic digestive distress. Attempts to control the reactions through diet were met with little success, though I tried a wheat-free diet for a time. I was also a vegetarian for 13 years and a vegan for a good portion of that, but I was miserable pretty much the whole time on a diet high in beans, nuts, and soy.
Prone to hives and rashes, it was often difficult to pinpoint a trigger for the reaction. Unlike other people I know with distinct food allergies, I didn't react to any food consistently enough to rule out the offenders. I was diagnosed with asthma and given an inhaler for the wheezing and chest congestion and told to take antihistamines for the rhinitis, but there wasn't anything anyone could think to do about the food.
By the time I'd migrated to the Pacific Northwest in my early 30s, my allergies were deemed severe enough to finally get me in to see an allergist. He prescribed an epinephrine pen and put me on a diet of only meat, vegetables, and white rice. But I was still a vegetarian, left with only white rice and vegetables. After developing walking pneumonia, I broke the 13-year meat fast.
At this time I also began to make changes in my environment to reduce allergens. I zipped up the whole bed, box spring and mattress, in a plastic covering; donated rugs, down comforters, and other sneeze-inducing items; and washed all my bedding and towels in hot water. But I swear to this day it was hot yoga that got me out of the allergy loop. After a year of regular Bikram yoga practice, I felt better in all ways, head to toe.
However, yoga only kept the wolves at bay for so long. After a few years, the allergies resumed even worse than before, despite a regular, committed yoga practice. With them came a new level of digestive distress, along with extreme night sweats, severe insomnia, a crazy amount of ringing in the ears, perceived hearing loss, benign cysts, joint pain, and inflammation. It's a party all the time when you're giving blood, urine, and stool samples, undergoing procedures like colonoscopy and mammography before you're old enough to warrant them, and then being diagnosed with some third-world, parasitic disease.
Yeah, that's right. I had hookworm.
My MD had missed it; I'd finally resorted to paying out-of-pocket for the services of an irritable bowel disease clinic, which my insurance wouldn't cover. Not even after the hookworm discovery. It's so rare in the States, I had to travel to three different pharmacies to piece together enough of the drug meant to eradicate it. It wasn't that the hookworm infestation caused the other symptoms, though. It was just part of it. The theory was that since my system is always inflamed and reacting to foods, the hookworm somehow took hold and stuck around - for how long was anybody's guess. Hookworm isn't even supposed to survive in cool climates like the Pacific Northwest, and I'd left the tropics of Florida a full decade before this.
By my 40s I had to give up fruit juice, I could barely tolerate alcohol, and soy was a huge problem. There seemed to be nothing I could do for the insomnia and night sweats, and I wondered if I were heading into the great 'pause a bit early. The IC roared back with tremendous severity, and a catheter scope (now with video!) found landscapes of scar tissue lining my bladder, including one particularly gnarly beast that looked like the boss at the end of a video game.
Worst for me, the digestive symptoms went into overdrive, and my eyes became increasingly sensitive. Somewhat desperate by this point and not finding a whit of relief though traditional medicine, I tried vitamins and supplements, acupuncture, cleanse diets, the Whole 30, wheat-free/gluten-free/dairy-free/soy-free/egg-free/taste-free/satisfaction-free diets. I took up Pilates and dance. I flirted with meditation, joined a spiritual center, and even went to see someone calling himself the "bone whisperer." But things continued to get worse.
Flash-forward to just two years ago, when I made a last-ditch effort to treat with two things I hadn't yet tried: medicinal herbs and Maya abdominal therapy.
You might remember a couple of articles posted this year on the blog from Amanda Jokerst of Forest + Meadow Apothecary and Clinic. She shared her thoughts on how to foster a healthy immune system and how to support your immune system with herbs. I met her at a farmer's market, of all places. The final clue to my lifelong health mystery came from her.
By now you're likely wondering how all of these painful, annoying (though thankfully not life-threatening) symptoms relate to each other. Or maybe you've sussed out that they're all part of the same autoimmune disease. Good job, detective!
After Amanda and I went through - over the course of a year - absolutely every known cause and treatment for what might ail me, she proposed a couple of possible diagnoses:
Mast Cell Activation Syndrome (MCAS) and Small Intestinal Bacterial Overgrowth (SIBO).
But of course Amanda will be the first to tell you she isn't a medical doctor. She referred me to a gastroenterologist whose specialty includes both MCAS and SIBO.
It took me a year to get in because Dr. Leonard Weinstock has a loooong waiting list, and also COVID-19 happened. In the meantime, I tried another, more available general allergist, who was only helpful in a small way, switching my at this point regular antihistamine from Zyrtec to Allegra, which has fewer side effects for me because it doesn't cross the blood/brain barrier. Otherwise, though, I could do nothing but wait.
During that wait, my symptoms worsened further, to the point where I now react to a wide range of health and beauty products and household allergens. Eating in restaurants has become so difficult for me that I don't miss them as much in these lockdowns.
When I finally got in to see Weinstock, I gained answers to questions I'd had for 30 years.
Apparently, I'm a "poster child" for MCAS, in his words. After blood and urine tests, as well as a comprehensive review of my medical history, I now have a definitive diagnosis of MCAS. My condition is "clinically significant," and I've been placed in a research study. MCAS is a "spectrum" disorder; we all have mast cells. They're pretty useful for snuffing out foreign invaders like bacteria and viruses. Mine just behave as if there's always a war going on, and everything that enters is the enemy.
Every one of the symptoms and conditions I've mentioned above, from IC to the food, inhalant, and contact allergies, and including a nasty bout of colic I had as a baby, fall under the MCAS umbrella.
And the SIBO? Yeah, I have that, too. It often accompanies MCAS and is responsible for the severe bloating I've had (so much fun when people actually think you're pregnant, but you're not). This diagnosis was confirmed through a lactulose breath test. Fortunately, there's a cure for SIBO. It meant taking the same drug used to treat E. coli, a prescription that cost me close to $700 out of pocket. Without insurance, that price tag would've been $2 grand, and that's with a hefty pharmacy discount. Hopefully, SIBO's gone for good.
I'm not happy at all to tell you that MCAS has no cure. The only thing we can do is decrease the symptoms. So I'm trying a medication that works by triggering your body's endorphins as well as supplying a few of its own. Endorphins, those feel-good hormones that give runners a high, tend to get suppressed under MCAS, which is why my reactions often hit extreme on the pain scale. Let's hope that this drug works, and the side effects are minimal.
Because lately, it's been a lot harder to sing the pain to sleep, and that lullaby is sure wearing thin.
Note: Please do not take the information presented here as a cue to self-diagnose. As described above, my diagnosis was arrived at through testing and determination by a medical doctor with a specialty in gastroenterology. It's best to consult your physician with any concerns you might have. That said, be tenacious if you aren't seeing improvement. Medical science is quickly evolving, with new discoveries and answers turning over established ideas all the time. MCAS wasn't really a thing back in the 90s when my own journey began.