There are some days when I have abdominal pain so bad I feel like I’m going to faint…and almost do.
If I forget to wear sunscreen and am out in the sun for longer than 20 minutes, my skin breaks out in hives.
Sometimes, when things go haywire in my body, my face will break out in red blotches.
I wash my face with salt water every night, otherwise it will peel and peel like I have a sunburn when I don’t.
There are many times when I wish I were “normal,” and there are times when I feel good about my current state of health.
You see, I went through years not knowing what I had. I’ve seen many doctors–most of whom told me there was nothing I could do for my digestion problems except reduce my stress, eat more fiber (!!!), and take drugs.
Things came to a head in 2014 when I developed rosacea–many red blotches on my face. By then, I’d already had IBS for something like 30 years. I went to see a dermatologist for the rosacea and she was able to step back and recognize that my rosacea and IBS were an indication of something else going on. She ended up testing me for SIBO and the test came back positive. It was one of the best days of my life because I finally knew what I had.
Sebborheic dermatitis and PMLE followed soon after that. I figured out after a few months of breaking out in hives that I needed to start wearing sunscreen every day (the physical kind that has zinc oxide in it, not the chemical kind with PABA and oxybenzone because that stuff makes me break out in a rash and is also bad for fish and the ocean).
It took me much longer to figure out that oils and most moisturizers make sebborheic dermatitis worse. It’s ironic because when your skin is peeling you think that putting on more moisturizer will help but it does the exact opposite. I continued to consult Dr. Goggle and thankfully, found a site created by a guy who learned to control his dermatitis by washing his face with salt water every night (the site is no longer up so if you want his tips, email me).
After a year of so, I moved on from the dermatologist. I will always be grateful to her for diagnosing me with SIBO but it turned out she couldn’t help me much more than that. After months of searching, I found a naturopathic doctor that specialized in GI issues and SIBO. For the last four years, we’ve been trying different kinds of treatments to eradicate the SIBO and what’s causing the SIBO in the first place. More and more, research shows that skin disorders stem from digestion and GI (gastro-intestinal) issues. So, if I heal from the SIBO, I will, in turn, heal from the IBS, PMLE, rosacea, and sebborheic dermatitis.
I’ve tried everything in terms of special diets, drugs, supplements, stress reduction, bodywork, and more. The only thing I haven’t tried is a fecal transplant, but hey, give it time.
There are days when the symptoms pile up because I ate something that disagreed with me and then went through a stressful event on top of it which results in me feeling out-of-wack for nearly a week. During those days, I feel tired, depressed, and on the verge of hopelessness.
Sometimes, I develop symptoms that cause issues on top of my current issues. It often feels like “two steps forward, one step back” and sometimes like “two steps forward, two steps back.”
But despite the pain, frustration, and disappointment, I see small changes every year that give me hope that I am getting better, very slowly but surely.
On the days when when I’m tired or in pain, if I give myself a chance to stop, rest, and breathe, I can center myself and emerge with renewed perspective. It’s on these days that it helps me to step back, look at my life, and take inventory.
I work for myself. I control my daily schedule. I have a wonderful husband. I have good friends and family. I create nearly every day. I teach people about things I’m passionate about. My husband and I own our house. Except for the mortgage, we have no debt. I live in a beautiful neighborhood in an awesome city. I have many privileges and advantages. In the end, I am free to live my life. There are many people–millions of people–who cannot say that. And, there were many years when I couldn’t claim even one third of these things.
So, yes, I have five autoimmune disorders.
I have to work every day to take good care of myself and learn what my body needs and doesn’t need.
I can’t be on auto-pilot. I can’t eat whatever I want. There are many days when I can’t do the things that “normal” people without GI issues can do.
Still, despite all the pain, frustration, restrictions, and disappointments–despite it all and with it all–I’m living my best life.
Photo: Near where King Kamehameha was born on Hawaii the Big Island by Marcus Donner