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| In the Beginning |
Yes Virginia, that is a bison burger on my plate. My plate. The one that hasn't seen meat on it in 26 years. 26 YEARS. The amount of time that it takes some folks to go from birth to being ensconced in professional life. In 26 years, one can become a professional (you choose!), have a couple of kids, assume lots of debt. There's time in 26 years for many loves, plenty of regret, and enormous quantities of food. Food. I've had a lot of food. I've even written about some of it. But none of the food I've consumed since I was 16 has possessed anything that many wordsmith vegetarians and vegans with a penchant for truth-in-melodrama would refer to as "a mom."
So what happened?
I'll tell you.
But first I'll tell you how much I loved being vegetarian and sometime vegan: I. LOVED. IT. Everything about it. And I wasn't one of those veggies who liked the processed food that resembled "real food." Nope. I love vegetables and fruits - all of them. Never met a legume with which I wasn't enamored. A handful of raw nuts sprinkled with nutritional yeast, yes please. Kale smoothies, fermented soy, kelp. Right here. I stopped drinking milk at age 2 (I remember getting wildly sick from it and that was the end) and eggs grossed me out. Meat and chicken and pork - staples in my childhood home - just never appealed to me. Growing up, my family wasn't appalled, but they were incredibly confused. Both of my parents and my sisters are dyed in the wool (so to speak) carnivores. And I was the opposite. Just by nature it seemed. I wasn't trying to take a stand, I was trying not to gag. Literally. I remember arguing with my dad one night as I tried to sneakily cut the meat off - let's face it - the meat. He observed my handiwork and said "You're killing it. Again." Funny guy. Look, it sounds annoying even to me. "Oh wow, she couldn't choke down that incredible piece of steak." But I truly couldn't. When I said at the age of 15 that I was craving a bowl of broccoli, tofu, and sesame sauce, I REALLY meant it. My mom - a lady of good Irish Catholic meat and potato stock - must have thought she was witnessing some kind of demonic possession. But eventually, everyone got used to me and my diet. And when my father (and later, my sister) were diagnosed with celiac disease (the real deal, not the faddish desire to eliminate gluten because Gwyneth Paltrow said so), cooking multiple dishes for multiple people with high-maintenance needs just became part of the norm. I also noticed that, even though I loved the taste of a good cheese and, god only knows, great ice cream, I'd feel so nauseated for 24 hours afterwards, it became easier and easier to just say no.
Ok, SO WHAT HAPPENED?
I'll tell you.
It started with this (you asked for it):
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| 2006 sleep study: Robo-Jen |
Way back at the end of 2005, after working as a television producer for nearly a decade and then running the NYC Marathon, my body crapped out on me. I was told I had Chronic Fatigue Syndrome, but it was noted that I had an incredibly strange thing going on in my blood work: Monoclonal Gammopathy of Undetermined Significance (MGUS). Something most often seen in middle-aged African American men. Sometimes MGUS is an early indicator of lymphoma or multiple myeloma, two very unpleasant cancers, so there was cause for concern. Doctors took all of this very seriously and sent me down the rabbit hole of medical testing. The veins in my arms have scars like a heroin addict. I've been scanned, poked, prodded, examined inside and out. I've had to collect my own urine (and other things) for 24 hours, travel with my own waste to a facility. and then DISCUSS it with medical techs first thing in the morning as they are just trying to have breakfast. Bless.
I got familiar with the not-so-modern expressions shared with me by supposedly modern medical doctors: "watchful waiting" and the especially medieval "tincture of time." These were to alert me to the fact that I needed to be followed and re-tested every few months for the many, many, many scary medical problems that COULD arise. Basically, every time anything happened internally I started to worry that this could be IT. Whatever IT was. IT was probably not going to be good. So I felt nervous for a good long while and talked endlessly about my problems and shared every burp and pain with friends, family, and my beautiful partner. And then I decided to try to empower myself and do the best with what I had. I changed careers, completed graduate school, became a clinical social worker working with survivors of violent crime, started my own private psychotherapy and wellness coaching practice. Always very active, I ran, walked long distances, lifted weights, even completed that ludicrous "Insanity" regimen. I ate well (Vegetarian with some fish thrown in for good measure - fish had never fully exited my diet). I got mostly used to "watchful waiting" and didn't let it affect my life. I did my research (I'm a certified holistic health coach) and added in high-quality supplements targeted to control inflammation: turmeric, Zyflamend (by New Chapter), probiotics, b-complex, fish oil, vitamin d. I had it all figured out. I thought. (Here begin the real life lesson).
And then in 2013, I came down with what seemed like a 9 month stomach virus. I lost a ton of weight for no reason and had stomach pain all the time. The naturopath I was seeing told me I looked like I had "wasting syndrome" (normally applied to AIDS patients and others with terminal illness). I had another endoscopy and colonoscopy and it turned out I had erosive gastritis (bleeding in the stomach, not from an ulcer). But they didn't know why. More tests. A blood test revealed a slightly elevated Alpha-Fetoprotein (AFP). Normally elevated in people with liver cancer, cirrhosis, horrible things, you get the idea. Ultrasound of my liver revealed a few tiny cysts and a "lesion." Possibly a benign hemangioma (a small collection of blood vessels that many have). Or something horrible. Was this IT? I got sent for a CT. Lots of radiation. The CT scan showed nothing. The doctors said "We don't know right now. We'll just have to wait and see." In other words, more tincture of time.
I began following a vegan diet because it was what appealed to me. I had gone on and off of vegan diets over the years, but this time I was strict about it. No animal products of any kind. Wheat and gluten had also been in and out of my life. They went out. I kept up with my supplements. My stomach improved and healed, but I wasn't feeling stronger and my weight was still low. My digestion remained erratic. My left leg started swelling randomly. The rheumatologist sent me for neurological tests. In case you were wondering, much of medicine retains that Middle Ages flava that I recall from my days as a nerdy Medieval History major in college. So these neurological "tests" more closely resembled something you'd expect to see on Game of Thrones. After being made to lie on a table for 2 hours, breathe in such a way as to induce hyperventilation, and then tilted up on the table - Frankenstein style - to force the blood to rush from my brain to my feet and induce at best panic, and at worst fainting, I realized we have much to learn. These tests revealed that I have something unsexy called POTS (Postural Orthostatic Tachycardia). This basically means my blood pressure and heart rate do their own thang especially if I stand up too suddenly. For some, this can be really debilitating, but I never gave it too much thought having never really been affected by it in my every day life (That is, off the Frankenstein table). The treatment for POTS is lots of water, extra sodium in the diet, and exercise even when it feels difficult to keep blood circulating. I generally did all of these things so, again, I wasn't too worried.
It had also been noted on a previous scan that I had a large fibroid outside of my uterus in the muscle of my abdomen. Could this be the cause of so many of my problems? Abdominal surgery was scheduled for February.
And then in January 2014, during the iciest, snowiest winter in memory, this happened:
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| Fractured wrist. On the hand with which I write. In the dead of winter. |
On my way with J. to a local bar to have a Friday eve drink, I slipped and fell on the ice and fractured my wrist. It hurt like hell and was a bitch to maneuver in the frigid cold and on icy streets, on and off a bus, getting in and out of a heavy winter coat, no glove, working in a public hospital where hand sanitization IS A MUST. But I did it. And I never missed a day of work. I healed much faster than the orthopedist expected and was out of the cast and into a brace within a month. I felt like a bad-ass.
Surgery for the fibroid was rescheduled for April to give me time to heal and get my bearings back, especially since the surgeon decided she wanted to perform a full myomectomy (open abdominal surgery versus laproscopy). I went to see a colleague who is an acupuncturist and she strongly encouraged me to be evaluated by a cardiologist. "Your pulse is erratic," she said. So off I went to a cardiologist in anticipation of surgery and he noted how low my blood pressure and pulse rate were and attributed it to being in good cardiovascular condition. He did think that I needed to be especially well hydrated during surgery because of the POTS. I had a consultation with an entire team of anesthesiologists who came up with a plan to keep my heart from stopping during surgery (Apparently this can happen with POTS). Again, I felt pretty confident.
And then I woke up after surgery and everything was different.
First of all, I was WIDE awake. Not groggy. Not sleepy. Completely and totally awake. As if I had never been unconscious, intubated, operated on. I felt as though I had merely blinked. I was definitely nauseous, which had never happened to me before after any procedure. But I was able to ask for nausea meds and engage fully in conversation. My entire body felt electrified, as though all of the nerves had been stimulated. I actually asked the nurse for a Xanax (probably a first in the surgical recovery room) which they gave me intravenously. And I realized that I was - no joke - in the midst of what I can only describe as an existential crisis. 24 hours overnight in the hospital was excruciating. I didn't sleep. I couldn't relax. I was never in pain and actually refused all pain meds because I didn't need them (which the nurses and doctors found unusual). I was discharged to home at my lowest weight since childhood. My father looked at me and his eyes widened. I saw myself in the mirror and couldn't process what I was seeing. I made it my mission to heal quickly and regain my strength.
I returned home to my healthy vegan diet and supplement regimen. I started having bouts of flushing and fever (This had happened before surgery as well). I was given an antibiotic in case of infection that turned my skin yellow and gave me migraines. It turned out I didn't have an infection and the antibiotic was discontinued after two days. My incision was healing beautifully. No complications and practically no pain at all. But I looked awful and couldn't shake the "electrified" feeling I had since surgery.
And then, out of nowhere, I developed tachycardia. One morning after eating breakfast, my heart started to race. I counted it at 130. My heart rate is normally 60 and, often, way below. Then my blood pressure went up. As someone whose blood pressure normally remained at or slightly below 100/60 (I told you I have low blood pressure), it was suddenly in the 140/90 range. I was having trouble breathing and frequently getting dizzy. I went to the cardiologist who was stunned and in coordination with the rheumatologist and my primary care doctor, sent me for, you got it, more tests. Scary potential diagnoses of "carcinoid tumor" (an adrenal tumor that impacts the body's ability to regulate blood pressure, heart rate, temperature) were discussed. I was sent to another neurologist. This one, a specialist at Cornell, took one look at me and responded, when I said I must be having a panic attack: "This isn't anxiety, this is something physiological." So that felt vindicating since I was starting to wonder if I was going crazy. Literally. I told him about my experience after surgery and he nodded. "That sometimes happens" he answered. I would have felt relieved if my heart was racing so badly. He drew blood and we waited (but not for long) for the results.
So here's where it starts to get interesting. Where the life lesson comes in. A life lesson that I really hope to spread to others, especially those who think of themselves as healthy eaters and who take every supplement recommended in a magazine or on Dr. Oz or in the back of US Magazine.
But first, full disclosure: I am a nerd. I love the art and science of medicine. I should have become a doctor but I convinced myself long ago that I wasn't smart enough to do this. That was dumb. I'm still thinking of following this dream. I am particularly fascinated by "food as medicine" and know that the root of all healing lies in how we manage our stress, the environment in which we live, and the food we ingest. We live in a highly toxic world. Enough has been incredibly well-written on that topic, so I will move along with my own personal revelation...
The blood tests came back and revealed that, while I did not appear to have a carcinoid tumor, I had toxic levels of B6 in my blood. Also, that my carnitine levels were low. You read that first part right: TOXIC levels of B6. B6 is, obviously, a vitamin. It serves many important functions in the body, but can be toxic to the nervous system when levels are too high. The funny thing about the nervous system is that when nerves are damaged, they don't just heal. They can be permanently damaged. Our entire body is comprised of nerves and we rely on these nerves for actions we don't ever think about. Take the autonomic nervous system for example. Autonomic means, essentially, functioning independently of consciousness. Blood pressure, heart rate, digestion, breathing, are all controlled by the autonomic nervous system. When the nerves that impact the autonomic nervous system are damaged, this can lead to what's called "autonomic neuropathy." POTS is a form of autonomic instability. Autonomic neuropathy requires damage to the nerves and that damage is essentially irreparable.
The doctor told me that what was likely going on for me was that I had autonomic neuropathy, possibly due to B6 toxicity and further exacerbated by recent surgery (which assaults the nervous system). He told me to discontinue B complex supplement immediately and begin to supplement my low carnitine with Acetyl L-Carnitine. Carnitine is found in the highest concentrations in red meat and dairy. He also told me to begin supplementing with Alpha Lipoic Acid (ALA) which has been found, in some studies, to be effective in slowing the progression of neuropathy.
Note, the conventional wisdom is that vegans are deficient in B vitamins (normally found in organ meats and other animal products) and require supplementation. I was candid with the neurologist about my diet and my supplements and he said "Maybe a vegan diet isn't for you." When I asked him about B-complex he said that the dose of B6 in the supplement could be toxic for those who are compromised and certainly for those who get enough B6 in their diet. Also "Every person responds to supplements differently. There is no one-size-fits-all."
Every person responds to diet and supplements differently. There is no one size fits all.
Bio-individuality is an important and often overlooked concept in our world of health and wellness. Social media, huge pharmaceutical companies, and the constant drive to be bigger, better, faster, stronger mean that we often don't think about ourselves as independent of the masses, of our own unique DNA and medical conditions. We are not all the same. We do not have the exact same biology. Supplements or medications created by pharma companies who are using 170 pound Caucasian men as test subjects, are labeling products being used by bigger and smaller men and women of many different backgrounds with many different pre-existing health conditions. Take it from me, that innocent looking vitamin supplement on your shelf might be really, really hurting you. As it turns out, the erosive gastritis (bleeding in my stomach) may have been CAUSED by turmeric which I was taking - as recommended EVERYWHERE - to help reduce chronic joint pain and inflammation. I have since discussed this with my doctor and noted that the bleeding in my stomach stopped when I discontinued that supplement over a year ago. Interesting.
And about the Paleo Diet which I started talking about paragraphs and paragraphs ago. I started researching and read Sarah Ballantyne PhD's excellent book
The Paleo Approach. Ballantyne is a medical researcher and someone who suffers (and has family who suffers) from numerous autoimmune diseases. Strong links between autoimmune illness and diet have already been confirmed. But Ballantyne breaks down the science and explains why and how a strict autoimmune protocol (AIP) Paleo Diet that - along with the typical exclusion of sugar, dairy, grains, legumes, industrial vegetable oils - also does NOT include eggs, nuts, seeds, nightshades, coffee, cacao and severely limits other immune system triggering foods, can aid healing.
I considered what she and others had to say. I knew that MY body needs carnitine (found in animal meat). I noticed body pain, wasting, brain fog, increased dizziness, blood pressure/heart rate fluctuations, digestion were worse with my balanced vegan diet. After discontinuing B-complex, my blood pressure soon returned to its ultra low state. This isn't normal either but its a little less terrifying than high blood pressure and constant tachycardia. Additions of carnitine and ALA have made a noticeable difference in my weight, skin, and hair quality. And then came diet. I knew I couldn't just abandon all of my faves (nuts, seeds, coffee, 90% dark chocolate) in favor of bone broth soup and organ meat (recommended by Ballantyne). But I decided to see how I felt with an increase in my consumption of fish (sardines, salmon), removing ALL grains and legumes, significantly increasing vegetable intake, adding in fermented foods (i.e. raw fermented sauerkraut, etc), and the addition of best quality, grass fed, humanely raised meat.
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| The Burger: One small step for mankind, one giant leap for Jen Warner |
So I did it. I didn't gag once. In fact, it went down so smoothly that it was almost scary. I felt something in my body wake up. I felt energized in a deeper, more primal (sigh) way. I still feel symptomatic, don't get me wrong. And I've already been told that my neurological issues may not get better and may actually get worse. I still have to be re-tested and "watchfully wait" to see if there are new or worsening developments. I have had to dramatically change my overall approach to my life: adding in more gentle exercise (yoga a few times a week), limiting weight training to times when I feel strong enough, not running (though I hope to get back to this at some point), being mindful of how I feel and adjusting my behavior to those feelings, staying hydrated, sitting down when I feel light-headed or dizzy. Being mindful of my feelings. And compassionate towards myself. As someone who prided themselves on "going hard" all the damn time, I realized the only person I was fighting - and destroying - was myself. As they say on the airplane, "Put your own mask on before helping anyone else." This slow change in all areas of my life I hope will allow me to live longer but live better and more compassionately towards myself and others. I'm not looking ahead to the finish line, but enjoying where I am right now because, let's face it, that's all anyone has.
I'm not advocating a particular diet or exercise or supplement for anyone. This is just my story but I hope it will inspire you to listen to YOU. Don't try to be anyone else or take a vitamin meant for a 170 pound Caucasian man (unless you are one in which case go for it if that's your thing). You have a body and a brain that want you to pay attention to them, so listen. Treat them as you would a small child. Don't yell or berate or deprive or force feed. Keep yourself clean, drink enough water, eat when you're hungry, get some fresh air, laugh, play, love, sleep. And another thing, don't ever, ever take your nervous system for granted.
