My Story – Part 1

This is the story of my journey with an autoimmune condition, psoriasis.

I’ve had psoriasis for about as long as I can remember. I think I might have come into this world with eczema because I have memories sitting in a gooey, gray slurry of oatmeal and bath water when I was very young. The oatmeal had a very weird smell, sort of like a combination of calamine lotion and oatmeal. I hate oatmeal. It’s probably psychosomatic from those oatmeal baths. In the middle of my second-grade year, we moved to Washington state. My memories do not include oatmeal baths at this time.

In about second or third grade, I had psoriasis on my scalp and the doctor prescribed coal-tar. I’m not a fan of that smell either. My mom would part my hair, scratch off the scales and apply the coal-tar cream.  My head itched so badly I sort of enjoyed her scratching my head like that. She was not very enthusiastic though. I had it on my elbows and knees and sometimes my hands. I looked like I wore pink eyeliner because I also had it on my eyelids in my eyelashes. I put the coal-tar on all the psoriasis locations except my face. Coal tar, is apparently, a known carcinogen. That’s a nice touch, don’t you think? 

It’s noteworthy here to digress for a minute. When we moved from Minnesota to Washington, we first lived in a rental house while my parents built their dream home.  We went back and forth to school each day so my mom and dad could do their stuff in the evening at the new house. That was the middle of second grade for me. Maybe it was all that change that got to my immune system, or maybe it was mold and mildews; turns out I’m pretty sensitive to those. I got strep throat that year and most years after that until high school.  At the same time, I had surgery to remove an abscess in my throat. Because of the abscess and adverse reaction to penicillin, I was hospitalized for about a week even though tonsillectomies are usually a day surgery.  I never do things half-way, hahaha! 

I managed to get all the way through grade school without a ton of teasing, but then one day in middle school (7th grade), all that changed. In Spanish class, my scalp had been itching like crazy and I’d been scratching. I happened to be sitting behind one of the evilest little boys in seventh grade. It was his job to belittle and make fun of kids.  He heard me scratching and turned around to see flakes falling like snow on my desk. My desk was covered in flakes. My shoulders were covered in flakes. Until then, although I had this condition, I really didn’t see myself as radically different from anyone else. I was accepted into team sports. I was an A student. I was (and still am) outgoing. I had friends. But something changed that day. That kid humiliated me and continued the rest of the school year. All of the sudden, I desperately wanted this psoriasis thing to be gone, but doctors said basically two things: first, there isn’t anything you can do unless you have it really bad, covering more of your body because the risk doesn’t justify the treatment; second, you’ll likely outgrow it. Looking back retrospectively, I had it pretty easy. I’ve seen a lot worse eczema and psoriasis and I’ve seen how cruel kids can be. 

When I was in junior high school (after 7th grade), my mom did take me back to the doctor who basically said (again) the best thing for me is ultraviolet exposure, but that would mean shaving off all of my hair. I had GREAT hair; it was an important part of my identity. Not happening. My mom spent about two seconds suggesting that I could consider it when we went out on the boat for the summer. We wouldn’t be around anyone, etc, etc. but stopped mid-sentence when she saw the horror on my face.

Something else happened that year of seventh grade. I had Mrs. Hotelaine for some elective class in which we explored natural cosmetics (like avocado facials, mayonnaise-based facial cleansers, aloe vera) and different kinds of eating like vegetarianism. We also explored alternative medicine like acupuncture and herbal medicines. I dove into the health thing.  I became a vegetarian– sort of. I loved the Puget Sound and everything in it, so giving up seafood entirely wasn’t going to happen. But I ate no land animals. My mom bought me “Diet for a Small Planet,” which taught me how to combine foods to ensure healthy protein levels (too bad that was debunked later), but mostly the book gave me something else to believe in — conservancy and sticking to natural things and whole foods.  I ran 7 – 10 miles a day. I used natural products and rarely ate processed foods. By high school I was sprouting grains, making yogurt, and treating my hair and scalp with natural oils.

I entered high school with really good fitness and eating habits.  I wasn’t perfect, there were also parties and junk food and social stuff. I had a good foundation though. I hate to think how much worse off I might be if I hadn’t been so healthy. 

I was very sick in my freshman year which ended up in a tonsillectomy and abscess in my throat removed at age 16. I had brain fog that settled into feeling more like a think layer of cumulus nimbus and mild depression and fatigue. In spite of all those good healthy habits, “what is happening?” I wondered. I asked my mom if I could go see a therapist, to which I was told, “no daughter of mine is going to go to a shrink!” It probably wouldn’t have helped anyway. Retrospectively, I can’t help believe those symptoms were related to dysbiosis caused by so many years of antibiotics. My gut was a wreck, so I was a wreck. The out-of-balance gut caused my already struggling immune system to be hyper-reactive with allergies, worsening skin conditions, and problems with mood.

I can see now that brainfog and other symptoms were related to inflammation, dysbiosis, and the autoimmune condition.  It was the mid-seventies and there was still a lot of stigma around certain things–mental health for sure. What I did need, very few doctors were practicing or even knew about back then. I needed a Functional Medicine doctor who could help me understand the root cause of what was happening in my body.  No one really thought of psoriasis as an autoimmune condition back then and no one really saw it as a problem stemming from leaky gut. (Thank you antibiotics!)

Maybe I did grow out of it (mostly), but by the time I left for college, the psoriasis was mostly under control except for flare-ups around finals.  I didn’t need coal-tar most of the time or topical steroids because though the psoriasis was always there, it just wasn’t that bad.  I was the typical college student–I ate healthy most of the time–but I didn’t have a lot of money. I worked at a restaurant and ate there on my shifts to save money. I got to the farmers market about twice a month and ate a lot of popcorn in between. Of course, my weekend beverage of choice was wine! And then there were cigarettes too. My young body could take my abuse, or so I thought.

See Part 2 in my blog next week for the continuation.