Stop making excuses. If you want to, you will find a way. It took me 37 years, but I never gave up.
– Melanie Lankford
Preadolescence with Illness
I was 8 years old when my autoimmune journey began. It was 1980, and my family was returning to Seattle after a trip to California. In the bathroom of the rumbling Amtrak train, I left blood in the metal toilet, my stomach churning. I worried the whole way home but decided something I ate must have been to blame. I was wrong.
Back home, my parents took me to my pediatrician who was mostly clueless and didn’t understand how a young child could have such severe intestinal problems. My grandma had mentioned something about her and her sister being lactose intolerant, but that seemed irrelevant at the time. I was given sulfonamides (aka sulfas, synthetic antimicrobial drugs) and prednisone (a powerful corticosteroid which shuts down the immune response).
Two years and too many tests later, I was finally diagnosed with Crohn’s and colitis, two types of inflammatory bowel autoimmune disease. I was the youngest patient with Crohn’s that the medical community in our small Washington town had ever seen. At one point I passed out during a colonoscopy because a child-size scope wasn’t available. Despite the scary doctor visits and tests, I had a happy childhood. My parents looked out for me while I cared for my chickens, rode my bike, made forts, and read as much as possible. Despite my diagnoses, I was doing okay. That would change.
I knew I had Crohn’s and Colitis, but as I began middle school, I still ate what I ate and lived my life as I always had—now with medications. It was pretty strange breaking out a pill during the middle of lunch and not being able to go into the sun for long, but I did what I was told, and it seemed to work for a while. Until 8th grade.
By age 13, I had become what I thought of as “popular light.” Although I wasn’t a “cool” kid, people liked me and I was pretty—everyone loved my long hair, which was wavy with different shades of blond, brown, and red. Crohn’s started making me sick around Halloween that year and the medication made things worse. By Christmas, prednisone ballooned my face into a round moon, and I was tiny and weak. And then, to make matters worse, all of my hair fell out. Kids who didn’t know me started calling me “cancer baby.” I was mortified. I’m fairly sure now that my early hair loss was caused by anemia, but as a teenager, all I knew was I wanted to die from shame.
Scary Symptoms and Dangerous Choices
I entered high school miserable and socially isolated, but by the time sophomore year rolled around, with blossoming hormones, I was doing okay again. As my health issues plateaued, I started to rebel. I shaved one side of my head, dressed mostly in black, took up smoking, and partied with my friends. I was fine, until I wasn’t.
Mid-junior year, I wound up in the hospital, except this time I didn’t want to go back on prednisone because of all that it had done to me in middle school. I stayed in the hospital for almost two months. At one point I had a staph infection and almost died. Finally, I gave into the prednisone, and sure enough, my hair fell out again. I hated my life. I felt out of control and I started engaging in more risky behaviors as high school came to a close.
The summer of 1991 was a blur. I was partying all the time—making all sorts of dangerous choices—and then, I ended up in the hospital again. This time, I was suffering from a massive Crohn’s flare and dehydration. I spent over a week there recovering, taking prednisone and sulfas.
After this hospitalization, I decided to get my life together. I started community college where I met my first husband. Once I graduated, I went for my master’s degree and my husband went into the military. We grew apart, and the stress led to another flare. The doctor I saw told me I was “difficult” because I asked too many questions. He kept scheduling procedures—at one point my lower intestine was only a few centimeters wide due to scar tissue and inflammation—and recommended Imuran (an immunosuppressant), which I refused. Even so, I was on birth control, still smoked cigarettes and lived off deli food—corn dogs, chicken strips, etc. In other words, I was still a mess. I ditched my doctor and decided I was fine without one. I ended up in the hospital again with dehydration. In the ER they warned me I was on a path to self-destruction. I ignored them and checked myself out.
New Beginnings, Same Sickness
I started working toward my master’s degree and soon learned I was five and a half months pregnant! I had recently quit birth control, but the news was still shocking. My OBGYN had said it was highly unlikely I would get pregnant because of the orientation of my uterus and because I was so unhealthy—my body was so malnourished I rarely had a period. Luckily, I had turned down the gastroenterologist’s suggestion for Imuran, which can cause all kinds of crazy birth defects. In fact, despite the odds, I had a very healthy pregnancy. The baby-growing hormones kept me energized. I was 25 years old, hiking, working a full 40-hour week, and going to school.
But after I had Emma, things went downhill. My new gastroenterologist, who respected my need to ask questions, found over 500 polyps in my lower intestines, which meant I was seriously inflamed. Still he never answered my question why I had the polyps, why I was so inflamed. I took a leave of absence from school and work, and my parents watched the baby while I had surgery and recovered. The surgeon removed almost all of my colon and re-segmented the remaining portion with my small intestines. The sample they sent to the lab came back as cancerous, but fortunately, the doctors had removed all the cancer.
It took me a while to get back to work; I quit school, opting to be a stay-at-home mom instead. The result was that we were dead broke, but somehow, I felt stronger, even though I was on sulfas and prednisone again and by this point couldn’t lose any weight. When my daughter’s dad and I broke up, I started selling things on eBay full time to support my three-year-old.
I decided to try again for my master’s, but this time I wanted to study Education. I figured it would be helpful if I had the same time off as my daughter, plus, I discovered I was great with kids. The years passed. I couldn’t lose weight to save my life, but at least, I was cancer-free and avoiding any Crohn’s or colitis flare-ups. I stopped smoking, worked out a few days a week, ate healthy-ish, and started a garden. I married my current husband in 2004, and I had my second daughter in 2005.
The second time around, pregnancy took a massive toll on my body. My eyes swelled up and I dealt with false labor throughout. It was a terrible time, and I only had six weeks off after my second daughter was born before I went back to teaching first grade. Shortly thereafter, I wound up with a goiter, and half of my thyroid was removed in early 2006. Signs of Crohn’s followed. My joints hurt all of the time, and I weighed 230 pounds. This was my rock bottom. I was only 32 years old. I needed to figure out a way to be there for my girls.
I Finally Found Functional Medicine
I began to trust my instincts. After years of doctor visits and no good answers, I started paying more attention to my body and was able to correlate Crohn’s and autoimmune symptoms with my monthly cycles. Each month, I would have a flare and spend the rest of my cycle struggling with what I later learned was pernicious anemia. Apparently, my body was unable to make sufficient red blood cells, but no one told me why. No doctor had checked my iron or ferritin (iron storage) levels. No one had tested my adrenal or thyroid function; and no one had checked my B12 levels. I was crashing and napping all of the time after work and I didn’t know why.
Then one summer, I decided that I had had enough of being miserable. I found a Functional Medicine doctor who diagnosed me with Hashimoto’s thyroiditis, epithelial basement membrane dystrophy (an eye disease that causes corneal scarring and excruciating pain), and lichen planopilaris (a hair autoimmune disorder similar to alopecia). Food sensitivity testing revealed I was sensitive to dairy, beef, oysters, and the herb astragalus.
As soon as I gave up dairy most of my Crohn’s symptoms went away! I lost 35 pounds, and I thought I had the golden ticket. My eldest daughter’s results were almost identical to mine, except she also had an allergy to gluten. I didn’t think much of the information—we were both dairy- free, but she was gluten- free too. I didn’t know then that gluten doesn’t react show up on blood tests if your body is worn down from years of gluten abuse. In hindsight, I was in denial. I still had Crohn’s symptoms, I was still saw blood in the toilet and my joints burned. More tests showed a positive result for lupus and a major B12 deficiency—I had pernicious anemia and had to give myself B12 shots. I had virtually no hormones in my body, aside from a little estrogen.
I researched everything. I went on hormone replacement therapy, and I started taking low-dose naltrexone (LDN), which is purported to stimulate increased production of endorphins, the body’s feel-good chemicals, which in turn strengthens the immune system. The LDN helped relieve my joint pain but not the Crohn’s. My gastro put me on Flagyl and later Cipro, both antibiotics, which only served to trigger a lupus response and keep me out of work for a month. And despite tons of cortisone shots in my head and topical creams, nothing seemed to help with the hair loss. I had gallstones so my gallbladder was removed. I went to a rheumatologist who did tons of tests, but ultimately said, “You’re pretty healthy compared to most of the people we see. You can still walk and bend.” Yikes!
I was still waiting for someone to fix me, and in the meantime, all my symptoms, pain, and bleeding persisted until … drumroll … I quit gluten for good in 2015. The transformation was magic. In one week, all of my Crohn’s symptoms were gone. My doctor couldn’t believe it, but he couldn’t deny how the degradation of my small intestines healed within one year. I also started acupuncture which helped a ton, and I lost the rest of the weight I had been carrying around for years.
I thought I had it all figured out, but there was one more big trigger to go.
Fast forward to 2016. My hair was still falling out. Most of my right side was bald and I had a giant bare spot on the back of my head I could barely hide anymore. All the dermatologist wanted to do was give me shots. She put me on Plaquenil (used to treat symptoms of lupus) and, big surprise, it didn’t work. I quit the medication. I had already given up smoking, alcohol, gluten, dairy, and beef, among others, but I still ate a lot of sugar, not realizing that my go-to favorite treats used corn syrup. I finally realized that when I ate candy the sores on my head would flare. I stopped corn syrup products, reduced my sugar consumption and bam! my hair stopped falling out.
Today, my hormones are fairly normal for a woman on the verge of menopause, and I weigh a healthy 130 pounds. I take a tiny amount of levothyroxine and liothyronine for my thyroid, and I still take LDN because it has a reputation for being one of the very few beneficial anti-cancer and autoimmune drugs. I use B12 sublingual drops here and there, as well as magnesium malate, plus 5,000 IU of vitamin D daily (I live in Washington state where sunshine is a rare treat). Mostly I eat a lot of healthy foods, though, on occasion, I enjoy a sweet dessert, free of corn syrup, of course.
Photos courtesy of Melanie Lankford
Spreading Ripples of Health
My dad was diagnosed with Crohn’s at age 75. He’s given up dairy and I’m on him to give up gluten too—he’s 85 now. My mom was diagnosed with diverticulitis at age 74. She’s also off dairy and gluten and doing great. My kids are both dairy and gluten-free and I hope they can avoid the health issues I struggled with for so many years.
I have reflected a lot on my wild and rebellious years. No one thought to talk to me about how I was feeling with all of my health issues and the toll they took on my body, mind, and spirit. My parents have a lot of guilt about not removing dairy from my diet when I was 10 or having me speak with an understanding therapist—but they didn’t know better back then, and I don’t blame them.
Thankfully, we all know better now, and we’re all better for it. I’ve learned that doctors are often well-meaning, but in the conventional world, they only look at one small piece of the puzzle. It’s imperative that you take charge of your body and don’t rely on the medical community for answers. I may have been too “difficult” for my GI doctor when I was in my early 20s, but that attitude helped me persist in the long run. It may have taken me a while, but I kept getting back up and trying something new.
Bottom line, you must become the CEO of your own health and wellbeing, and you have to keep trying new things.
The excuses you will make to avoid change are vast, like “eating healthy will cost too much,” “I need coffee to live,” or “I can’t afford the supplements.” If you want to, you will find a way. It took me 37 years, but I never gave up.
My Top Recommendations:
- Decide to take control of your life
- Stop making excuses for your bad habits
- Hire a root cause (holistic) doctor to help you find and treat your specific root causes as naturally as possible
- Experiment but remember to try one thing at a time
- Track your progress
- Be patient with the process
- Stay hydrated
- Never ever give up!
Remember, you are worth it!
Today I still teach school and I enjoy camping, hiking, and gardening on my days off.
As Melanie wisely suggests, what are your symptoms saying to you? If you get quiet, listen to your body and trust your intuition, you may already know what you need to do. What is one thing you can do right now in the direction of your dreams? What are you waiting for?
Take good care!