Strength and Mini-meltdowns: Tips for life with autoimmunity and loving someone with autoimmunity4/26/2016 I'm standing at the salad bar at Whole Foods, staring down at the prepared foods, losing the battle to hold back my tears. I can feel the heat rising and splotchy tears start to fall. I stare straight down into my empty brown salad box as people walk around me. Just hold it together, I tell myself, desperately trying to think of anything that will distract me from more tears, anything to avoid people noticing that I am crying. But it is too late. A vault inside of me has cracked open and all of the emotion I've been holding on to floods out. My husband has noticed me and walks over to me.
I can barely whisper to him "They don't have my salad today." The one thing I can eat. They don't have it at Whole Foods today. Of course, this all seems very melodramatic. Sure, I could have bought all the ingredients and made my own salad. Sure, it is just a salad. Was I crying because I had planned to get my one "safe" salad and have a relaxing dinner on the Whole Foods patio with my husband and FOR ONCE not have to cook a meal from scratch? Yes. #firstworldproblems. Also, autoimmune disease problems. Fast forward one month later. I'm at lunch with a friend. I've ordered a grassfed burger, no bun and just veggies on top. It arrives with a sauce. I've explained all my allergies to my waiter who then assures me the sauce is totally grain, dairy, corn, and soy free. I take a bite of the burger and immediately taste soy. I want to enjoy my friend's company-- I'm here to spend time with her. And now I am completely distracted by the fact that I have just taken a bite of soy and I can't eat this. I wait for the waiter to return and explain the dilemma to him. He leaves to go to the kitchen to check if there is soy in the sauce. My friend has finished her meal. We wait. The manager finally comes over and apologizes. He offers to remake my food. At this point, we've been there a while. He kindly asks how he can remedy this. I am so embarrassed at the time this has distracted from our meal and at my own high maintenance requests. I burst into tears, further embarrassing myself. Again with the melodrama. Sure, I could have just reordered the meal. One waitress at a restaurant in Austin said it best, in my opinion. I had just told her my food restrictions. And in a completely kind, patient voice she said "Wow. That must be exhausting to have to look out for all those things all the time." And that's just it-- one single incident doesn't set me off crying. When my joints hurt one morning or I go a family function where there is nothing for me to eat, it really isn't a big deal. But add up all of the symptoms that I deal with, all of the unpredictabilities-- will I have energy to work out today AND cook dinner?-- will I have brain fog and get dizzy at work?-- will I need to plan ahead for a social function?-- will my friends pick a restaurant where I need to prepackage all my own food? It is exhausting. I'm already tired from having an autoimmune disorder and helping my body heal. Add the emotional of feeling like a constant hassle, a constant inconvenience, a constant sense of being abnormal, a constant fear of accidentally eating something that would cause my joints to swell and my hearing to fade. It is a daily struggle to remind myself that I am making progress, I am getting better, and I will heal. I have good days and bad days and then some days in which I think I'm doing good only to break down. One blessing is seeing the love of the people around me. My husband who is my eternal optimist and sees almost all of my breakdowns, my friends (especially my fellow AIP'ers) who have encouraged me in my transition, and my family members, especially my grandmother, who have adjusted some of their recipes to make sure I have something to eat at family gatherings. After one year of adjusting to autoimmunity, I've gotten a lot of practice at coping with the difficulties that come with it. Here's some things I've learned for those coping with autoimmune AND those helping people with autoimmune: 1. Looks can be deceiving. I can look totally normal. You may not notice my swollen joints. Or that I am feeling dizzy and disoriented. People with chronic illnesses like autoimmune can look just like they always have and yet, they might be in constant pain. You can't tell just by looking at them if it is a good day or a bad day. Just because someone seems ok, they may not be. This works both ways though-- I've learned that I can't assume people know I'm having an off day. In fact, people wouldn't know I'm sick unless I said something. So I can't get angry or upset with the people around me for not understanding when I haven't communicated how I feel. For me, I've had to accept that communicating my pain or struggle does not mean that I am a weak person. It is a way I can be fair with those in my life who love me and want to help me. 2. Every day is new. Some days, I can do a HIIT workout and blow everyone else in the gym out of the water. I can run 5 miles, do 100 squats, and then not be sore the next day. And then some days, I struggle to walk a mile and need a three hour nap in the afternoon. Some days, my inflammation is under control and I can eat a piece of chocolate. Some days, anything but broth, juice, and veggies is going to cause joint pain. I have to listen to my body and take it one day at a time. For those around me, they've learned they can't assume that just because I was totally healthy one day doesn't mean I'm in permanent remission. But this works both ways-- on rough days I have to remember that I am getting better, but remission is not a locked in cured state. I will always have to work towards healing and remaining healthy. Bad days aren't permanent death sentences and there is always hope for tomorrow. 3. Patience is your new favorite virtue I've been working on healing for almost a year now. I am not better. I've made a lot of improvements, but I'm not healed. I know people who have been on Autoimmune Protocol for several years and continue to heal, but are still dealing with health issues. I didn't get sick overnight and I can't expect my body to heal overnight. It will take years of recovery. Sometimes I think I'm doing so much better and then I have a flare. I want to give up. But then Tom reminds me of how much progress I have made. For people who are helping those with autoimmune, we desperately need your patience. It can be frustrating to be close to someone who is so unpredictable, physically and emotionally. Please remember, we didn't choose this. We need you to be long-suffering with us. Patience is needed to heal; patience is required when trying new treatments, adding new supplements, integrating new foods, and combating infections. I am so thankful that when I get frustrated with my progress or lack thereof, Tom reminds me of all the good things that have happened thus far on our path and that we need to enjoy the now. Real healing is not a quick fix. 4. I am not my disorder. As I said earlier, people with autoimmune disorders would not pick to deal with their ailments. I don't want to be a hassle. I don't want to have to order different foods or cause inconveniences at restaurants. I hate that I cost my husband so much in medical bills. I hate that sometimes I can't physically do all the things I want to accomplish in one day. I hate that I get brain fog or get dizzy sometimes. I hate that sometimes I lose my patience with the people I love the most because I am dealing with fear of the future. I don't want all of these things to become a part of me. In some ways, I feel like these adjustments have replaced so much of my personality and who I am. I can't put my head down and bulldoze my way through my problems based on sheer will power alone, like I want to. I have to take things in stride-- a practice that is completely against my personality. But... in some ways, dealing with autoimmunity has made me a stronger and more compassionate person. I have to fight to remind myself that I am still me, despite of my circumstances. I just hope and give thanks for the people in my life who see me for who I am really am and not what I am going through. So there you have it. I am sure years down the road, I'll have more to add to this list. And while this list might seem simple, these things were not easy lessons to accept-- they were accompanied by a lot of tears and a lot of inner battles, but also, a lot grace and acceptance, both towards myself and from other people in my life.
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Trust me when I say that my kitchen has done a complete 180. In the past 11 months, I've gone from a meat-free, vegan kitchen to a meat-centric, grain-free, dairy-free, corn-free, soy-free kitchen. Other than a few veggie-centered dishes, NONE of the recipes that we relied on on a regular basis met the qualifications to stay around in our new lifestyle. Thankfully, my husband has one dietary requirement: it has to be delicious. Here's a look at what our typical weeknight dinners used to look like: Monday: Baked sweet potatoes with black beans and salsa Tuesday: Soy glazed stir fry with brown rice Wednesday: Um....I'm trying to remember what I used to eat and honestly, I don't remember cause I don't miss it. Our current weeknight menu: Monday: Bacon, sweet potato, and kale hash with a fried egg and guacamole Tuesday: Crudite plate with jamon, oysters, dried fruit, smoked salmon wrapped around avocado Wednesday: Grass fed ground beef in marinara sauce over spiralized sweet potato noodles Thursday: Salmon filet with mango-avocado salsa and parsnip french fries Before I changed my eating habits, I would eat and then be hungry a few hours later. I could never understand those people who "accidentally" forgot to eat a meal. I was the person counting down the minutes until the next meal (and in some cases, adding an extra meal in to tide me over). BUT, I couldn't have made this transition on my own. These cookbooks saved me!! Not only are these books great resources for coming up with AIP/Paleo compliant recipes, but some of them also provide helpful information about autoimmune disorders and the science behind why an AIP diet can help. The Autoimmune Paleo Cook Book If I had to recommend ONE cook book, this is the one. The recipes are straight forward, clearly organized, and really, the most important part, is that EVERY.SINGLE.RECIPE is delicious. One of the hardest things about transitioning to AIP/Paleo is that almost every condiment has corn syrup, sugar, or soy. The sauces in this book are even better than "the originals." For example, the cherry-maple BBQ sauce is the best BBQ sauce I've ever tasted. The avocado crema sauce-- is it a dip or a sauce? The answer is both. The answer is put it on absolutely everything. An extra bonus is that the photos in this book are stunning, making you want to try all the recipes. The author, Mickey Trescott, runs the blog Autoimmune Paleo with Angie Alt, another incredible AIP expert to follow. Their blog makes me want to be BFFs with them. The Paleo Approach and The Paleo Approach Cookbook If there was an AIP/Paleo bible, these books would be it! In The Paleo Approach, Sarah Ballantyne goes into the nitty-gritty scientific explanation behind everything you could ever want to know about AIP. I mean, she delves into the molecular explanations of why it is important to avoid certain foods and how autoimmunity really works. I had so many questions when I transitioned over-- this book provides detailed reasoning for those who want to understand the why behind the AIP/Paleo diet. In the cook book, the recipes are clearly organized into categories and most of the recipes are really approachable and simple. The cook book also provides adjustments or modifications for people who are following FODMAPs, which I didn't do but I would imagine is incredibly helpful if you are trying to include that modification in your healing process. Dr. Ballantyne runs the website The Paleo Mom-- another great resource with recipes, podcasts, and articles. The Autoimmune Solution This book isn't really a cook book, although it does contain recipes. Dr. Myers walks through her own autoimmune issues with her thyroid and then dedicates the remaining chapters to methodically walking through how to combat autoimmunity in several different areas of your life. She does address food, but she also addresses heavy metals, mold toxicity, and environmental pollutants. She provides suggestions and resources for transitioning over to cleaner resources in all areas of your life. As I said, the book does have recipes, but there are no pictures and the recipes are very simple. She does include a meal plan and a strategy for batch cooking, which I find incredibly helpful for people who have never been big on cooking all their own meals (as most people must do when they are starting out on AIP). For me, I've always loved to cook and spending a lot of time in the kitchen is not a chore, but if you find yourself overwhelmed with the idea of eating every meal at home, this book gives you a game plan. Here's more info about Dr. Amy Myers. I love that she's from Austin, too! The Wahls Protocol
For me, this book isn't so much about the recipes, although Dr. Wahls does include recipes (no pictures though:( This book gave me a lot of hope during my worst moments. So much of having an autoimmune disorder is mentally fighting fear. You don't feel in control of your own body and sometimes symptoms seem inexplicable. It can be terrifying. Dr. Wahls herself was diagnosed with MS (multiple sclerosis). Her disease had progressed to the point of her being wheel-chair bound and completely dependent on others. Yet, by nourishing her mitochondria with nutrient dense foods and the appropriate supplementations, she has reversed her MS to the point where she is able to ride 10+ miles on a bike!! This resource is incredibly informative when it comes to understanding how minerals and vitamins help our body repair itself and function properly. You can read more about Dr. Wahls here. Other cookbooks have been incredibly instrumental-- the Whole30 cookbook helped me start my transition last May. And in the past few months, some new AIP/Paleo cookbooks have come out, but with this being the part of the school year where most teachers develop an eye twitch due to what we call "May Madness" (which really lasts from spring break til the end of the year), I haven't had a chance to try any new books. Once summer gets here and I can try out some of my new cookbooks, I'll post a AIP/Paleo Cookbook review, Part II! I didn't get sick overnight. In fact, now that I have a better understand of autoimmunity, I can connect illnesses from when I was in college to the beginning of my autoimmune disorder. I have to remind myself that just as I didn't get sick overnight, complete healing will take some time as well. It can take months for the effects of food allergens to leave our bodies and it can take years for our cells to completely repair themselves. At my worst time of suffering, I had hearing problems, joint pain, brain fog, and severe fatigue. The first step in healing was to change my diet and I started with a Whole30 (basically Paleo). For 30 days, I followed this strict protocol: 1. Eat real food (organic and hormone free when possible) 2. No sugar of any kind, real or artificial 3.No alcohol, even for cooking 4. No grains of any kind including corn, oats, rice and ANY form of these modified into other foods (i.e rice bran oil, dextrose, etc.) 5. No legumes 6. No dairy 7. No preservatives, carrageenan, or sulfites 8. No baked goods or "desserts" Whole30 is a great place to start! After 30 days, I saw a huge improvement in my symptoms and even better, my ANA markers, which indicate the presence of an autoimmune disease, decreased! This bolstered my hope so much, but there were still some ways I needed help healing. That's when I came across AIP (autoimmune protocol). Autoimmune protocol is very similar to the Whole30, but it takes things a step further. I followed AIP for about 3 full months before I started integrating foods back in. This gave my body a major break from all of the inflammation that was causing pain and stress. Once my inflammation had calmed down, I started adding back in eggs, nuts, seeds, spices, caffeine, and some nightshades (interestingly, tomatoes are ok for me, eggplant is not). One great thing about AIP is that it really depends on each individual person. Some people will always react to nightshades or always react to caffeine. Some people are never able to add back in eggs. Also, my naturopath explained that autoimmunity is like a spectrum of high to low inflammation-- if you are stressed and exhausted, your inflammations levels may be high and eating a ton of nuts and seeds adds to that inflammatory load so your body can't handle it. Then another day, you might be well rested and a handful of nuts won't have any tangible effect. It is a balancing act AND it takes a long time to get to know what your own body can and can't handle.
Seriously, the AIP diet has helped me in so many ways that I can't recommend it enough for people suffering from autoimmune issues. In the past 12 months with AIP: 1. My symptoms are under control and I'm continually healing my body. By buying quality, real whole foods, I'm nourishing my body to heal itself. Furthermore, I feel like I am now aging in reverse. When my symptoms were at their worst, I felt way older than someone in her 30s. Now, I feel younger than I did in college!! I've learned so much about how real foods are healing my body on a cellular level and improving the health of my mitochondria (more on this later!). 2. My workouts are more effective AIP isn't just about eating. Even your exercise schedule should be about nourishing your body. I used to be THE cardio queen. Distance running was my addiction and I adhered to the misconception that more is always better. But actually, I've learned that chronic overexercising contributes to gut imbalances that lead to autoimmune disorders. Plus, I would always be so sore after my workouts it would take me a few days to recover. Now, I can do insane HIIT workouts and not be sore because my body is not wrecked with inflammation. I temper those HIIT workouts with long walks outside, yoga, and pilates. And even better, I am way more toned than I was during those years of running mile after mile. My body responds better to the training and the food I am eating is helping me build toned muscle. 3. My brain is back! Last spring during the worst of my symptoms, I had the hardest time focusing! I remember trying to read my students' essays and reading the same sentence over and over again. I felt like I had ADD. I couldn't remember things and I felt like I was losing my marbles. Now, my mental clarity is restored and again, I feel like my brain is aging in reverse. 4. Sleep is AMAZING Y'all, can I just say that I used to think I was a super light sleeper who just naturally woke up 2-3 times a night? And I don't even have kids or a small bladder to wake me up. My sleep pattern was inconsistent and rarely restful. I thought 6 hours of sleep was all I needed because that's how long I could stay asleep. My autonomic nervous system was just so taxed that I couldn't get into a restful state long enough to actually let sleep heal my body or brain (more on this later). Now, I can sleep 8 hours without waking up once and when I get up in the morning, I feel energized and rested. Overhauling my diet and lifestyle like this wasn't an easy transition, but there were several tools and resources I used to help me with my success. When people ask me questions about my diet, they often ask how I can adhere to such a strict plan. They ask if it is difficult to follow it or not cheat. Honestly, I cheated once. And when you cheat and wake up the next day feeling like a semi-truck repeated rolled over your body, extracted your brain and sucked out all of your blood, suddenly, cheating isn't that attractive or worth it any more. Committing to AIP is doable and there are a lot of sources out there to support you in your transition if you are struggling with an autoimmune disorder. Coming up, I'll post my favorite web resources, cookbooks, and how to travel and stick with AIP guidelines. Since sharing my "adventure" into the world of health with people, I'm really astonished at how many people aren't feeling well. And how much of it is related to autoimmunity. In the past year, I've had at least 4 friends adopt an autoimmune protocol lifestyle and seen tremendous results with improving their ailments. People suffering from debilitating migraines, eczema, PCOS, Hashimoto's, and more. I've talked with at least a dozen more people who have had symptoms of a beginning autoimmune disorder who have noticed the correlation between what they eat and how they feel. And I can't even begin to count the emerging cases of gluten-intolerance, allergies, and ADHD-diet related cases I've seen among all of the youth that I work with. The next generation seems to be feeling the effects of the SAD (standard American diet) even more than my own generation.
AND YET..... The more I've delved into the naturopathic world of alternative medicines, the more I am shocked at how little doctors actually know about the patients for whom they prescribe medication. They don't ask about patients' diets or lifestyles. They don't consider the connection between diet and illness (side note: I've found this to be true with the exception of people with diabetes. Generally, doctors have the common sense to tell them to stop eating sugar. But do they tell people with diabetes that sugar doesn't just come from baked goods and sweets?). For example, in the past year, I've learned that I have a dairy, corn, and gluten sensitivity. Well, there are a lot of prescription and over the counter medications that have ingredients derived from dairy, corn, or gluten. So if I doctor didn't know this about me, prescribing said medicine could actually cause further problems. One of the very helpful, but costly ways I've learned about healing is through tests. The tests I've taken in the past year have provided me and my naturopath with insight into how my body functions and I would highly recommend the following tests for anyone wanting to learn more about how to optimize their health: Cyrex Labs is a "Clinical Immunology Laboratory Specializing in Functional Immunology and Autoimmunity." There are a few other companies that do allergy testing, however, Cyrex, according to my naturopath, looks for all of the immune markers AND it repeats the blood testing several times to ensure the same results and accuracy. I used their tests to find out that I did have a gluten intolerance. It also showed I had heightened reactions to dairy. Cyrex also offers tests that can tell you how you react to over 200 different foods; one test will show you your reaction to types of vegetables, fruits, grains, and nuts. In addition, they compare your reaction to the food in the raw state and in the cooked state, as you may react differently to each form. Two things to consider: first, you do need a functional medicine professional to order the labs for you and for me, my tests were not covered by my insurance. Secondly, no test is a better indicator of an intolerance or allergy than how you feel. For example, I've never been tested for a corn allergy. But every time I eat anything with corn in it, my hands get itchy, my joints swell, and I start to lose my hearing. I don't need a test to confirm my corn intolerance and if for some reason a test showed I "did not" have a corn intolerance, I would still avoid eating corn. Cyrex Labs I don't like to talk about bacteria. Good bacteria, bad bacteria. It just grosses me out. But at the basis of so many autoimmune disease, we find an imbalance of bacteria. So you gotta deal with it. Some people may suffer from Candida or SIBO. For me, I am treating H. Pylori. When I first went to see my naturopath, I was like "I want to take ALL the vitamins I can. I want to take ALL the supplements right now. Fix me now!" I didn't actually say that cause I didn't want her to think I was crazy. But it was something to that effect. Anyway, she recommended that first, I get tested for H. Pylori. She explained it this way-- if I need to improve my vitamin and mineral absorption and raise my white and red blood cell count (which have been chronically low), I need to make sure that I can actually absorb what I'm taking in. It is no good to take a bunch of supplements when my gut is a hostile environment that won't absorb anything. And H.Pylori, SIBO, or Candida can do that to your gut. They take it over and make it a hostile environment-- they have to be treated and quelled in order make progress. Now, getting tested and getting treated are two different things. Treating these imbalances is no easy or short task, so I'll do a separate post on that. But for now, if you feel like you are eating the salad bar at Whole Foods every day and still feeling crappy, ask yourself if there may be a reason your body isn't absorbing all that eat. You aren't what you eat-- you are what you absorb. Below are the links for H.Pylori and SIBO testing. H. Pylori SIBO The 23andme test has been advertised beyond the medical community, and while I think it has a lot of value, I plan to use the data I gain from it to be more preventative than anything. This test was the easiest to take-- you order it online and they ship you the box with a little tube. You just blow in the tube, seal it, and send it back with the prepaid shipping box. This test WILL NOT diagnose any illness or tell you any food allergies or intolerances or give you insight if you are suffering from autoimmune related issues, but my hope is that the more information I know about myself, the more proactive I can be in restoring my health. I plan to give my results to my naturopath to hopefully glean more information from the data. 23andme These are just a few of the tests I've taken in the past year. In a future post, I'll go over blood work tests that insurance DOES cover, mold testing, heavy metal tests, and my system for tracking my own data. The more I've delved into these tests, the more I've realized that people who chronically feel blah shouldn't accept the status quo. There's usually a reason behind why we feel poorly and tests are just one piece of the health puzzle. Disclaimer: The information I've provided is based on my personal experience and has not been peer-reviewed or evaluated by the FDA and is not intended to diagnose, treat, prevent, or cure any disease. I am not a medical professional nor do I play one on the internet. |
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