Managing autoimmunity through food, mindfulness, functional medicine, and lifestyle.
Sunday, September 11, 2011
My Story
I love reading people's stories (especially success stories!) They give me hope and encouragement. They motivate me. They give me ideas. It recently occurred to me that I've never told my own story and one of my Facebook friends asked to hear it. It's something I've been meaning to write about for a long time but it just kept slipping my mind. So, here is my story.
In The Beginning...
I was born in 1977 near Detroit, Michigan. My parents had the good sense to move out of the Detroit suburbs and up to the north woods of northern Lower Michigan (Michigan is comprised of two peninsulas, in case you're confused: the Upper and Lower peninsulas.) We moved near the little finger area of the mitten.
I spent the first eleven years of my life in the woods, in a little house with a woodstove next to a river. My mom was fairly "health conscious", so my family ate a lot of whole wheat bread, brown rice, hot cereal, whole grain cold cereal (and no sugary cereal), alfalfa sprouts, yogurt, honey, dried fruit and mostly whole foods (including venison and fish that my dad hunted and fished). How many people's moms served barley as a frequent side dish? Mine did! I will say that I was probably exposed to a much wider variety of foods than my friends were. Who else, outside of California, in the early 80's was eating steamed artichoke?
Other than recurring ear infections (the bane of my childhood existence!), I wasn't sick much. I had lots of energy and spent most of my time in the woods with my younger brother (our property was adjacent to state forest land) building forts and exploring in all seasons.
After my parents divorced and my mom remarried, I moved a few hours south to the shores of Lake Michigan where I spent my adolescence. When I was 12, I had started to have a lot of issues with my left leg (esp. my knee), which has a large birthmark running the outside length of it (it looks like spider veins and faint, blue veins). It would slightly swell and become so painful that I couldn't walk.
By the time I was 13, it was bothering me frequently, so I had tests done and vein abnormalities were found. I had major knee surgery right before my 14th birthday to remove the offending veins. My surgeon at the time had never seen my condition before and it would be another 12 years or so before my condition was diagnosed as Klippel-Trenaunay Syndrome, a rare congenital vascular deformity. I basically have twice as many veins in my left leg and internal (in the muscle) varicose veins that can pool with blood, causing the muscle to stiffen and the tissue to swell. In normal veins, blood flows in one direction. In my veins, it's a free for all; a vascular clusterf*ck.
I recovered from the surgery well and it did help to greatly reduce my discomfort, but in retrospect, I think it was the beginning of adrenal fatigue for me. I lost a lot of blood and it was a pretty invasive surgery, with my knee being taken apart to get at all the veins and then put back together. My health never quite felt the same after that.
The Problems Begin...
In the years following, I developed hypoglycemia, low blood pressure (I'd often see stars or start to black out if I stood up too quickly) menstrual problems (horrible cramps and simultaneous IBS), and general feelings of fatigue. I had bad bronchitis every winter. I just didn't feel good anymore. I discovered my mom's stash of old nutrition books from the 70's and 80's, including titles like "Are You Confused?", "The Vegetarian Guide to Diet and Salad", "Fit For Life" and Adelle Davis books.
I began to experiment with nutrition and herbs, eventually dropping meat from my diet when I was 15, after reading an Utne Reader article on factory farming. I still ate a little fish once in awhile, but for the next 16 years or so, I would eat a largely vegetarian (and at times, vegan) diet. I even got a part-time job at the little health food store in my town. I became one of those health-nut types.
I ate lots and lots of "healthy" whole grains in the form of sprouted Ezekiel Bread veggie sandwiches, oatmeal (nearly every morning!), brown rice, tortilla chips, etc. Lots of salads. Lots of rice milk (because dairy was bad, of course!) And lots of Soya Kaas, though not a lot of fake meat, because those were the days when fake meat was really awful and variety was limited.
Being vegetarian wasn't cool or mainstream yet (I was the only vegetarian I knew!) Those were the days before T. Colin Campbell and "Skinny Bitch". The days when Dean Ornish was just getting started and Dr. McDougall still ruled the (low-fat/low protein) vegetarian roost.
I went through phases of being dairy free and then wheat (but not gluten) free in hopes of curing my wicked menstrual cramps (to no avail). My mom worried about me being too legalistic about my diet, every time I decided to drop a food for awhile. I was hungry all the time and had frequent low blood sugar, so I took chromium (it didn't help that much). I got lovely cysts on my chin that took forever to heal. I felt spacey and frequently unfocused. As I got closer to 18, I suddenly started to gain some weight. It was such a bummer, as I had formerly always been skinny and never had to think twice about what I ate.
Into The South (where things went further south)...
When I was 19, I moved to Nashville, Tennessee along with my mom and sister. I had decided to move here and my mom, in the midst of a divorce and wanting a change of scenery, decided to also move, so we all moved together. That was the summer that my hair started falling out.
Hair sheds in cycles, but when your hair really starts to shed excessively, you know that something is wrong. The shedding eventually abated, but in the following year, I developed some fairly severe fatigue. I was working in the kitchen of a macrobiotic vegan restaurant at the time and I'd come home and have to lay down and nap for an hour to even be functional. It didn't help that I had to work at 7 am and that I was a night owl and therefore never seemed to get 8 hours of sleep.
It also didn't help that my free lunch (and lots of take-home leftovers) consisted of soy, grains and beans galore. I was SO tired (and scared that someone so young could be so tired!) and in the winter my hands and feet were freezing all the time! I'd be at work, prepping lettuce for the salad bar and my hands would just ache every time I had to put them in the sink of cold water. They'd ache to the point of making me grouchy.
In my search for health, I discovered that I had a whole lot of hypothyroid symptoms. The hair loss, fatigue, weight gain, cold hands and feet all fit the bill, so I went to the health food store and got a thyroid supplement. It did help with somewhat with the fatigue, hair loss, and body temp issues, but it didn't cure me of all my ills.
After the restaurant job, I got into supplement retail and stayed there for the next nine years. In those nine years, I learned a whole lot about and experimented with tons of vitamins and herbs (I also met my lovely husband and got married right before I turned 26). I read a lot of nutrition books, but I was pretty much only reading things that supported my veg-centric philosophies.
It never occurred to me that my "healthy" diet could be the root of my still persistent health issues (by this time I had developed hay fever. Great.) I had insomnia (thank you acupuncture and understanding hubby for helping me get through that!) My short-term memory was like a sieve. I also had a lot of fatigue and no matter which herbs or vitamins I took, I didn't have energy. I had barely enough energy for work- it was challenging being on my feet all day- and then none left over when my workday was done. I sometimes felt vaguely achy. I had a nagging feeling that I was teetering on the edge of Chronic Fatigue Syndrome or something along those lines.
Raw Food: Lessons Learned...
Somehow or other I got into raw food. I didn't jump all in at first. I experimented, I did little bouts of raw and when green smoothies became all the rage, I drank a blender full every day. Eventually I decided to go all-in to see if I could heal myself. I began seeing my acupuncturist shortly after going raw and she was very frank with me. She told me that I was infertile (I had already been diagnosed with Luteal Phase Defect and low progesterone by my gynecologist) and so depleted of energy that it could take several years to heal. Crap!!! I realized that the stress of my job was working against my healing, so I decided that I had no choice but to quit my job (I had SO wanted to quit it, but it took a real wake-up call to give me a reason). My husband was extremely understanding and his career was now solidly on track, so we could afford for me to quit.
I really thought that acupuncture + raw food would heal me in record time. Imagine my disappointment when I didn't improve. Where was the "raw" energy and the glow I was supposed to have? Why wasn't my skin clear and why did my periods still hurt? Why did my skin suddenly seem to age (I was 30 at the time).
I was eating so many green smoothies, salads, superfoods, veggies, nuts, fruit, fermented foods, sprouted raw bread and hemp protein. My acupuncturist would take my pulse after a treatment and shake her head in confusion. No improvement. No energy. Weak digestion (food was going right through me!) In fact, I had started to lose muscle (and I didn't have a lot to begin with). Not cool.
I diligently read my favorite raw food forum, looking for tips on tweaking my diet to make it more successful. I met a lot of great people on the forum (many of whom I'm still friends with and most of whom now eat animal products;) One day, one of them who suffered from similar health issues as me confided that her new acupuncturist told her that she absolutely had to eat meat in order to heal and that she was going to try it. She was one of the most experienced members of the forum and the most knowledgeable and had tried every raw diet out there. I think her being brave enough to change planted the seed for me to change. I started reading the stories of failed vegetarian/raw diets on a site called Beyond Vegetarianism. I was realizing that raw and vegan diets seemed to be problematic for a lot of people. Could my own diet be keeping me from healing?
Then the dreams started. In the first dream, I was getting an acupuncture treatment and the doc said, in a stern voice, "Are you REALLY willing to do whatever it takes to get better?" When I woke, I had a sinking feeling that he was referring to eating meat (I was still raw vegan and hesitant to eat meat at that point). In the second dream, I was eavesdropping on two Chinese medicine doctors talking about me and one said to the other, while shaking her head in frustration "She NEEDS to eat meat!!". Ok, ok, subconscious! I was starting to get the picture!
In the final dream, I was outdoors and before me was a large table piled high with slabs of meat, fish, veggies and tubers (I can't remember if there was fruit). Sound familiar? It was the food eaten by a very tall, strapping, fit man and I was supposed to write it all down and analyze it. It was Paleo food. I didn't even know much about Paleo diets at the time.
The Home Stretch...
I was still keeping in touch with my now meat-eating former raw foodist friend and she had begun to tell me more about Paleo and Primal diets. She was healing and doing much better, so I decided I'd take the plunge into meat eating. I decided to go big- big as in BISON! My reasoning was this: what kind of animal embodies the strength and vitality that I'm so lacking in? Bison! So, I had my hubby cook me a bison patty and I was so nervous about taking the first bite. Would I gag? Would I get a stomach ache?
None of those happened. I took a bite, it was awesome, I ate the whole thing and then had to restrain myself from eating a second (I didn't want to push my luck with the stomach ache thing!) I didn't look back.
I went a few months eating an omnivorous diet, feeling a bit better and gaining back the muscle that I had lost. Little warts that I had on my fingers for nearly 2 years magically vanished. I decided to give acupuncture a break and try Medical Qigong treatments (of which I had heard great things) for my adrenal fatigue. Wow. They truly got me over the hump, so to speak. I had some energy again! That was also the beginning of my fascination with (and eventual training) in Medical Qigong, but that's a story for another time.
It was sometime shortly after that that I read "Primal Body, Primal Mind", at the suggestion of my friend. A thousand light bulbs went on in my head! It all clicked! OF COURSE I hadn't been able to heal my adrenal fatigue while eating so many blood sugar spiking grains! I decided to drop grains and immediately. I had big improvements in my energy and mental function (at least for a time). It was wonderful.
I fell in love with cooking again (partly because I had enough energy to even want to cook!) I also discovered a whole host of Primal/Paleo blogs (see my blog roll). What a fun time that was! My skin really improved. It stopped breaking out so much (I can't remember the last time I had a cyst on my chin) and it also started to look younger. I lost a little weight without trying (I had gotten skinny when I was raw but quickly gained some extra weight back in my omnivore phase). My menstrual problems also really improved. My digestion improved tremendously, too.
I was feeling much better, although I still had symptoms of hypothyroidism and hormone imbalances (you can't have balanced hormones if your thyroid is messed up.) There were still some missing puzzle pieces. I had finally figured out that thyroid issues are complicated and not something that you can treat on your own. I think it was my aforementioned friend who turned me on to the book "Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal?".
Reading the book was so eye-opening! It rocked my world. I'd read so many books and articles about hypothyroidism over the years and this book was telling me things I'd NEVER heard! I learned that the majority of thyroid problems are autoimmune in nature (Hashimoto's Thyroiditis) with GLUTEN being a main culprit (I was eating Primal but still "cheating" by eating bread once in awhile, like while on vacation). Could this be why I was still having issues? Why my brain function had devolved back into brain fog after initial improvements? Could I have an autoimmune disease??
I decide to steer clear of the gluten from then on. By sheer coincidence, I happened to find a functional health practitioner in Nashville who was using the protocols outlined in the book and so I went and got a thyroid antibodies panel. It came back positive. No more guessing; my immune system was attacking my thyroid (and probably other things as well!) So, we determined which part of my immune system was being overactive through a supplement challenge and I was put on a regimen to dampen the overactive side (by avoiding substances which stimulate cellular immunity) and stimulating the underactive side with specific supplements. More info on how this works HERE.
I started to feel better within a few weeks. I started to feel normal again. That was nearly a year ago. I've had minor setbacks (always after a virus- it seems to throw my immune system out of whack) but I've gotten back on track every time. I've had more periods of "normal" in the last year than in my entire adult life. I keep discovering more little pieces of the puzzle (like a neurotransmitter deficiency) and I keep improving. I keep on healing. Even though it's felt at times like my progress was happening at a snail's pace, it still happened. When I run into people I haven't seen in years, they ask me what I'm doing differently and tell me I look so much healthier and alive than I used to. It's nice to finally be walking among the living.
-Erin
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Thank you Erin. I have been studying health and nutrition, herbs, diet, you name it for years. You just gave me a whole new "library" to read and practice.
ReplyDeleteI have remitting/ relapsing MS, but with 2 little boys, I am still occasionally symptomatic and need more tools... You have inspired me.
Anonymous- I'm glad you found my story inspiring!
ReplyDeleteRegarding MS, I have read that there is a strong link between MS and chronic Lyme Disease (many doctors don't even believe in chronic Lyme):
http://www.canlyme.com/lymemultiplesclerosis.html
-Erin
Awesome story! Thanks so much for sharing. I'm going to share this on facebook if you don't mind as I think a lot of my friends & relatives would thrive with your blogs~
ReplyDeletexxx Elizabeth ;-)
Share away:-)
ReplyDelete-Erin
Wow. Your story is very inspirational. I am so glad that you are feeling better.
ReplyDeleteThank you for sharing! Martha
ReplyDeleteFascinating. I'm in the middle of exploring the idea that I am facing some thyroid issues, so your blog was another nudge that my instincts are right. I'm just really struggling with making the huge leap it feels like and concerned about detoxing while nursing Noah.
ReplyDeleteJoy, it's common to develop thyroid issues (esp. Hashimoto's) postpartum because of the drastic hormone and immune system changes that go on. Let me know if you need any resources!
ReplyDelete-Erin
Thanks for your story! It was great that you found what works for you after years of eating what you thought was healthy food. I wonder how many people out there still think that they are eating healthy while getting unhealthier.
ReplyDeleteI see so much of myself in your post. Thanks for sharing.
ReplyDeletePLA
l love reading, hearing and seeing success stories as well, and this is a good one too. Just following your blog for a short time now but i'm sure i'will stay for a while ;)
ReplyDeleteI have a very similar story to yours, I wrote about it today. I battled IBS for 10 years, and the Paleo/Primal/SCD diet (all very similar to one another) gave my life back: http://eugenia.queru.com/2011/09/13/listen-to-your-gut/
ReplyDeleteEugenia, that's great! Healing the gut is so important and I think it ought to be a component of any Primal/Paleo regimen.
ReplyDelete-Erin
Awesome Erin, so glad we both healed! It did take some time but is so worth it and I'm still tweaking things these days. Gone is the chronic fatigue, memory loss, thin peely nails etc; the list goes on. So grateful you started this blog.
ReplyDeleteElainie, you were such a big influence on me and very instrumental in opening my mind! I'm so glad we healed, too;-)
ReplyDeleteThanks Erin- I am working on a somewhat paleo baby book.........
ReplyDeleteThanks Erin. Where do you shop for your meats?
ReplyDeleteAlly, I get my meats from local farmer's markets (we have some nice pastured meat farms in Nashville), Whole Foods and Trader Joe's (I get 100% grass-fed ground beef there, as well as wild salmon canned salmon, yellowfin tuna, oysters and sardines.
ReplyDeleteIf you are suffering from hypothyroidism, you’ve probably searching for desiccated thyroid supplements. It strengthens the immune system which helps prevent complications.
ReplyDeleteWhat a great story! So inspiring to those of us who are still searching...Thanks for sharing!
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteThanks for sharing your story!! It's really encouraging :)
ReplyDelete