On Finding What Works

 

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The past year was a tough one—winter in particular. I was in a state of suspension, a sort of hibernation. It was a long, cold winter of polar vortexes and piles of snow and swollen lymph nodes and burning shoulders and acne and fatigue. I experienced a lot of physical pain, and a lot of fear because of that pain.

In the spring, I started using functional medicine, which helped many of my symptoms, but not all. Soon after, I added back a mild medication to ease the swelling in my joints. When my doctor told me it was time to do something different to get my inflammation under control, I listened. I had to face the fact that a year using the autoimmune protocol (AIP) diet, lifestyle changes, and functional medicine (along with the medication my doctor had prescribed me) were not enough to fully correct my rheumatoid arthritis symptoms.

Within two weeks of starting the new medication, I felt amazing. The medication took away the persistent inflammation that had been dogging me since February. I could breathe again.

As a result of feeling better, I began to say yes to more social activities because I wanted to be out and about. I tried dating again (just wait for my post on that!). I explored some high intensity interval training because my wrists could bear my weight again and my energy levels were soaring. I even went horseback riding, something I’ve always loved and which in the depths of last winter thought I would possibly never be able to do again. I was finally able to try reintroducing non-AIP foods like nuts, eggs, and spices because my RA symptoms were stable enough that if I flared up after eating them, I could attribute it to the food and not the roller coaster of inflammation I was already riding.

A big part of what drove me (and I assume drives many people) to use alternative therapies to treat disease was the fear of lifelong medicating and the accompanying side effects. The thought of taking something that could give you macular degeneration or lymphoma or kidney failure is, understandably, really scary. And in my experience, doctors kind of brush off side effects and fail to understand or empathize with that fear.

The main thing I remember from my first visit to the rheumatologist after I was diagnosed was that as soon as she came in the room, the first words out of her mouth were the ugly names of medications (Methotrexate? Blech!) followed by their many side effects. Literally, that was all she said. There was no discussion of what the disease was, or what it might look like to live with it every day for the rest of my life.

When I first started AIP, I had glorious visions of managing rheumatoid arthritis with diet alone. While I hoped that the autoimmune protocol would be the whole answer, I’ve learned that my autoimmune disease is tricky and that there is no silver bullet. What works wonders for one person – whether it be a certain diet or certain medication or combination of the two – might not work for another. You really can’t compare yourself and your healing to anyone else’s.

We’ve all read the stories about the people who are med- and symptom-free, lost 20 pounds, published a best-selling novel, and won the lottery all within two weeks of changing their diet (hyperbole, but you know what I mean!). I sometimes wonder, What am I doing wrong? Am I a failure? 

The answer is no. Using a combination of therapies isn’t failure: it’s common sense to use all the tools available to feel the very best (see this great post from Slightly Lost Girl about this topic). In order to be healthy, medication is part of the answer for managing my RA. It’s taken me a while to come to terms with that, and it is something I am still working on. My ultimate goal of implementing dietary changes is not to come off all medications, though that would be great. My ultimate goal is to manage my disease so that I can do the things I love.

I continue to be committed to and enthusiastic about using the autoimmune protocol, tweaking my diet, and learning as much as I can about the different factors that contribute to autoimmune disease. I truly believe that using the AIP allows me to manage my RA on the mildest drugs out there, and that eating in a non-inflammatory, immune-boosting way benefits my overall health immensely.

When I was suffering last winter, the first thing I thought about when I woke up was how much my wrists hurt, which led to worrying about the damage happening in my joints, which led to being afraid. Now I wake up in the morning and actually don’t think about my RA until … well, sometimes I don’t think about it at all. And that feels really, really good.

On Swallowing 57 Pills a Day

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Or, “What to Expect When You Visit a Functional Medicine Doctor.”

Well, I did it. I finally made an appointment with a local Functional Medicine Doctor (www.funcionalmedicine.org) to help me work out my persistent issues with inflammation despite almost a year on the Autoimmune Protocol.

For a long time, I’ve had a sort of fairy tale fantasy of what visiting a functional medicine doctor would be like. In my mind, the doctor would sit and listen for hours about every pain I’d ever experienced, every round of antibiotics, every digestive anomaly. They would pat me on the back for all the work I’ve been doing to heal with diet and who would provide a clear answer as to the reason I am still struggling with rheumatoid arthritis symptoms. The reality was a little different.

The Initial Appointment
I met with Dr. M to discuss my current symptoms, medical history, and lifestyle factors. He did indeed want to talk in detail about my medical history. He was quiet, yet knowledgeable and decisive about where to go from there. 

Test Results
Dr. M suggested I order two tests – one blood test for zonulin (which would tell us if I have leaky gut – read more about that here) and an organic acids test that looks for yeast/bacteria in an effort to solve my digestive mystery (which involved FedExing my pee to Kansas!). It was so helpful to be given a narrow list of tests to get, since I’ve often gotten lost down the Google rabbit-hole researching the multitude of tests I should get.

I tested positive for zonulin, indicating that I, after 9 months on a gut healing diet, STILL have a leaky gut, and I had elevated yeast presence as well. While frustrated that my gut hadn’t healed after all this time on my diet, I reasoned that I was still on hormonal birth control for 7 of those 11 months. Before that, I was on daily NSAIDS for 2 years and several rounds of Prednisone. As those medications likely contribute to leaky gut, then I can understand why it might be a problem. I can’t help but wonder if my current remaining medication, Plaquenil, is contributing as well but there is no research on it that I can find.

Diet
His recommended diet was basically exactly what I’ve been doing: healthy fats such as olive and coconut oil, pasture-raised meats and fish, and 9-12 cups of vegetables per day, with an emphasis on eating a variety of colors to ensure a variety of micronutrients. He recommended keeping carbs at 100 grams per day (to help fight yeast overgrowth), which I naturally tend to fall right around. He recommended adding back nuts and seeds (which I’ve successfully reintroduced some varieties of), and he is a big proponent of juicing and smoothies, which I incorporate occasionally. 

Supplements
Doctors prescribe medicine, functional medicine doctors prescribe further testing and LOTS of supplements. I was somewhat prepared for this, but nothing could be prepare me for being told to take 57 pills a day, plus a powder and two liquid supplements. These supplements include: herbal anti-fungals to kill off the yeast overgrowth in my gut; digestive support in the form of probiotics and digestive enzymes; gut healing supplements like L-Glutamine, MSM, and others; and key vitamins and anti-oxidants to help support my body’s ability to detoxify. The financial cost is enormous, and I can’t yet tell you how far into the future it will be financially sustainable for me. However, it helped to have someone knowledgeable about supplement quality recommend certain brands and look at my specific health history to recommend dosage. It took the guesswork out of buying and taking supplements helter-skelter.

Next Steps
The beauty of functional medicine is that you dig deep in search of the root cause of your illness. However, there seems to be no end to the depths which to dig to. One round of tests provides some answers that call for another round of tests. You can test for this gene defect (MTHFR) and these food sensitivities (IgG test) … but oh, if you have toxic levels of these heavy metals, then you’ll likely not improve even if you address those other factors. It’s really frustrating to start on the path for answers, learn which way you could take to get them, and then have to choose from a list of tests because you can’t afford all of them. Also, it’s hard to get good information about which tests are truly effective. I am still trying to research and prioritize what (if any) further testing I would like to do.

Results So Far
Though the doctor said it might take months to see real progress, since starting this supplement regimen three weeks ago, I have seen a number of improvements. My digestion has been the best it’s been since starting the AIP last August (though I have been experiencing some nausea and lack of appetite after taking my pills in the AM) and I’ve felt a surge of energy and a lightening of my mood.  My acne has calmed down.  My joint pain and inflammation has decreased quite a bit since my recent flare, and pain/stiffness is much improved.

The improvements so far are encouraging – especially that of my emotional wellbeing, which makes such a difference in the way life looks. So, though the reality of following this functional medicine plan means swallowing my weight in supplements, I’ll continue to pursue it and look forward to further improvement.

Feel free to ask me anything about this experience in the comments!

On Fire

Vermilion Lake Fire

When I worked for the MN Conservation Corps, my crew was trained to fight wildfires. One day in May, when we were staffing for fire in the northern MN town of Tower, were assigned to our first fire. All the training, all the waiting, and finally we were driving toward a small fire in a group of red pines near a new development. The fire was less than an acre, but we didn’t  care. We were just proud to be getting some soot on our clean, rookie fireproof shirts. Our job was to head in with hoses and tools and spray out remaining flames and douse any hotspots. This is called “mop-up,” and it can be a tedious process.

I quickly learned that there is so much more to fire than open flame. Even after all visible flames were out, the fire burned deep in the roots of trees and reached hot fingers into the earth.

Our crew was being mentored by a seasoned local firefighter named Ron. After two full days mopping up the fire, he took us back to the site again. The forest floor was charred and black, torn up by our thorough work digging at stumps and roots, looking for heat. All appeared to be quiet, but Ron knew better. He told us scatter around the area and kneel down. He said to engage all our senses and just wait. We were looking for smoke: little puffers that might tell of a hidden hotspot underground or tangled in the roots of some tree.

Sitting in the still forest, trying to be fully aware and present, we fell into a meditative silence. It didn’t seem possible that after scouring the area for two days that any fire could still remain. And yet after a few minutes of quiet, I caught the scent of something besides the smell of wet ash: smoke. The different smells were barely distinguishable from each other, and if I hadn’t been focused and still, I might’ve missed it. It took me several moments of staring at the ground and sniffing around me to spot the little puff of white smoke curling up from a black stump about ten feet away.

I feel like my struggle with my autoimmune disease has begun to mirror this story. Along with the medication my doctor prescribed, I’ve been eating a strict healing diet for nine months now and used the big foundations of diet, sleep, and stress management to quash the open flames of rheumatoid arthritis. There have been some great improvements and some setbacks, the most recent being a discouraging flare up of inflammation in my joints.  I feel as though I am walking through the blackened pine stand again, looking for the missing piece. It might not be an obvious flame, but instead is like a puff of smoke or a pocket of hidden heat deep in the moss. I need to get quiet, kneel down, and engage all my senses to find where and why the fire still smolders.

On Reclaiming My Energy

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Last summer, I lost my energy to prednisone—that tiny white pill that works like magic to diminish RA symptoms but causes a whole host of other issues, such as a depressed immune system, weight gain, and insomnia, among other things. Personally, I felt great on prednisone – it took care of my joint pain and didn’t bother me otherwise. This allowed me to enjoy a risky, blissful ignorance: I didn’t realize the power of the pill until I tried to stop taking it.

About Prednisone
Prednisone acts similar to cortisol, a hormone naturally produced by our adrenal glands. Cortisol completes many functions, including keeping inflammation at bay – which is why prednisone is used in treating symptoms of inflammatory conditions like rheumatoid arthritis and other autoimmune diseases.

While taking prednisone, the adrenal glands don’t have to work as hard to produce cortisol since prednisone is doing all the work. If the prednisone is suddenly taken away, the adrenal glands have trouble learning how to function again. For this reason, prednisone must be weaned off of very slowly so that the adrenal glands can re-learn how to produce cortisol on their own.

The Crash
At the recommendation of my rheumatologist, I began weaning off prednisone, stepping down 2.5 mg per week, from 10 mg which I had been taking for about 6 months. At that point in time, my symptoms were well managed using a combination of prednisone, plaquenil and sulfasalazine (which are Disease Modifying Anti-Rheumatic Drugs – DMARDs). I felt fine until about a week after my final dose. I went to work in the morning and started to feel clammy and lightheaded sitting at my desk, so headed home to rest.

The next day, I couldn’t get out of bed. Every time I sat up, I got a horrible head rush and my heart started racing. I knew I should get up and get something to eat, so I laid there and thought about it for 3 hours before actually being able to. I tried sitting in a chair to eat some strawberries, but ended up taking them back to bed because sitting up was too exhausting.

I called my rheumatologist, whose nurse told me that I was experiencing prednisone withdrawal and I could a) power through it or b) go back on a smaller dose and wean more slowly. She gave no real explanation as to what was happening in my body. Being somewhat stubborn, I decided to push through. I spent about a week in bed, too weak to do much. The simple act of folding a shirt necessitated a few hours napping. My boyfriend didn’t understand why trying to sit up and play a game of Boggle was nearly impossible. I slept for 11-12 hours a day.

After about a week, I slowly recovered my strength. I could stand and walk normally so that I was able to go back to work. At this time, I finally connected with some more helpful information and was able to give a name to what I was going through – adrenal fatigue (I highly recommend this post for more details on adrenal fatigue). With my racing heart, exhaustion, low blood pressure, dizziness upon standing, and emotional rollercoaster, I was your classic case of adrenal fatigue.

Getting Back on My Feet
The really severe symptoms lasted about a week, but over the next several months, I never regained my energy. Exercise was out of the picture, and I had lost a significant amount of weight from not eating well while I was sick. My blood pressure was consistently on the low side. I had a deep craving for salt – another sign of adrenal fatigue. I canceled my gym membership and left my bike locked up until summer was over. For a previously very active person, this felt like a defeat.

So what did I do? I researched and learned as much as I could. I knew I had to commit to healing if I wanted to get my energy back and feel like myself again. I started the autoimmune protocol. Sleep became my highest priority, and I gave myself 9 or 10 hours a night. I supplemented with B-vitamins and bought high quality Celtic Sea Salt to help with the sodium balance in my body. I looked at sources of stress in my life, the biggest being my (fairly new) relationship. I made the impossible decision to let him go so that I could seek health more fully.

It took about six months for things to turn around. A few weeks before Thanksgiving (4 months post-Prednisone), I sighed to my mom, “I just want my energy back.” It was around New Years before I felt that it was coming back to me. At that time, I was able to go for longer walks again. In January, I dusted off my hand weights. I started waking up after 9 hours of sleep actually feeling rested. Healing didn’t come all at once, or proceed in a linear fashion – at times it was very frustrating, with the triumphs seeming few and far between.

Looking back on those months, I am able to see where I could’ve done a few things differently to speed up my recovery. I was probably eating far too few carbohydrates, throwing my hormones even more out of whack.  If I could go back now I’d be sure to eat plenty of starchy vegetables. Also, I never forked over the cash to get a cortisol saliva test to confirm my diagnosis. It was pretty obvious what I was dealing with, as prednisone withdrawal is directly connected to  adrenal crisis, but would have been a good idea to know for sure.

I’m happy to say that after months of sticking to an AIP diet and managing sleep and stress faithfully, I’ve reclaimed my energy once more. I am back at the gym, lifting weights and feeling strong. I bought a new bike and took a long ride with a friend on Sunday, enjoying the first spring-like day in Minnesota. Feeling fatigued for months on end affected how I felt about everything. The healing process is far from over, but with my energy back, I am able to focus more on the good things happening in my life and feel capable of continuing the challenging road to recovery.

 

Book Review: The Autoimmune Epidemic

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The Autoimmune Epidemic by Donna Jackson Nakazawa
Bodies gone haywire in a world out of balance and the cutting-edge science that promises hope

An autoimmune diagnosis comes hand-in-hand with a cascade of questions. How did this happen to me? Why me, and why now? And what am I supposed to do next? When I was diagnosed with RA at the age of 23, these questions haunted me and were not answered adequately by my doctor. Instead, I had to set out to piece together the puzzle of my autoimmune disease on my own.

The Autoimmune Epidemic by Donna Jackson Nakazawa has been immensely informative in my quest for answers, and I believe it can be for anyone struggling to understand an AI diagnosis. This book explores the environmental factors implicated in the onset of autoimmune disease. The author posits that as the use of chemicals has increased in the past 40 years, so has the incidence of autoimmune disease. In fact, autoimmune disease has tripled over the past few decades.

The statistics quoted in the book are astounding. One in 12 Americans – one in nine women – will develop an autoimmune disease in their lifetime. Due to misdiagnosis, which often accompanies autoimmune conditions, this number is likely higher – it is quite normal for AI patients to see 6 doctors before they receive a correct diagnosis. In comparison, one in 20 Americans will have heart disease and one in 14 will have cancer. Yet, though the proportion of those who will be affected by AI disease is greater than that of cancer, cancer research receives ten times as much annual research funding. For how common AI diseases are, many people cannot name a single one.

Much of the book’s content surrounds a number of illustrative “case studies” (my phrase, not the author’s), involving both specific patients as well as specific researchers and doctors pursuing answers to the many questions autoimmunity poses. The studies and situations highlighted in the book underscore how exposure to toxins in our environment can cause our immune systems to confuse “self” and “non-self.”

There are over 80,000 chemicals registered in the US, many of which have received little research into the effects they have on the people that come into contact with them. Nakazawa proposes that just as companies are required to disclose known cancer causing agents in their products – “carcinogens” – we must also name and recognize those substances that could possibly cause autoimmune disease. She proposes “autogens.” These autogens range from heavy metals like lead and mercury to possible endocrine disruptors like BPA.

Autogens are everywhere – in our mattresses, in the air we breathe, in the water we drink. If so many people are exposed to them, then why do only some people get an autoimmune disease? Nakawaza offers a metaphor called “the barrel effect-” in the same way one drop of water can cause a barrel to suddenly overflow, so can one trigger cause an autoimmune reaction that has been building from exposure to toxins, stress, and other factors. Genetic susceptibility to AI diseases would make one person’s barrel start out much fuller than the next.

It is impossible to completely avoid all toxins and chemicals. So what is a person to do, especially those who already have autoimmune disease or know that it runs in their family? I was happy to see that the first defense against autoimmunity that the author talks about is diet and using food as medicine. She  emphasizes a whole foods, gut healing protocol. She also talks about ways to avoid exposure to known autogens. I’ve read most of the advice before from other sources – using natural cleaning and beauty products, avoiding plastic and BPA-lined cans, and purchasing organic foods if at all possible.

For me, The Autoimmune Epidemic created almost as many new questions as it did answers, begging further research and sleuthing into what may have caused my “barrel” to overflow two years ago. This book was instrumental in expanding my knowledge of how our environment affects our immune systems and it can be a helpful tool for anyone seeking to gain a deeper understanding of autoimmunity.

On Strength

Image Being physically strong has always been an important part of my identity. I take after my father in build – inherited his muscular frame rather than the petite stature of my mom. In elementary school, I was the best football player in the neighborhood, always picked first for the team. In middle school and even high school, I wasn’t afraid to challenge – and beat – the boys in my class at arm wrestling.

After college, I let my strength take me to the haggard North Shore of Lake Superior, where I worked on a Conservation Corps crew for a year. I spent entire days tearing up old stairs on hiking trails and lugging the waterlogged lumber up the side of a steep ridge. I hiked eight miles in one day, over a Minnesota-sized “mountain,” carrying a days worth of water, gasoline, and a bulky weed whip strapped to my body for trail maintenance. I shoveled gravel, wielded a chainsaw, put out hotspots to contain forest fires, broke ground with pulaskis and sledgehammers. I was at the pinnacle of my physical strength.

And then I woke up one morning with pinkies that clicked when I tried to open them and feet that burned as if there were tiny planets on fire between my toes. Rheumatoid arthritis—and the medicines used to manage it—came and leached away that strength so that some days I couldn’t even hook my bra behind my back or grab a door handle and twist. In the past few years, there have been times I felt physically strong despite RA –thanks to prednisone – and other times where I felt very sick. At the times I was my sickest, I would look in the mirror and be unable to find that strength I’d always defined myself by.

I’m learning that I need to work through, and heal, the parts of me that are psychologically wounded by RA as I work hard to heal myself physically. As part of my healing process, I’ve made space to think about and meditate on these things. To wonder, if the thing I always valued about myself was my strength, and I now have a disease that wants to take that from me … who am I?

Recently I spoke to a good friend about this faltering self-image and the struggle rethink the way I perceive myself. She told me that as she’s seen me undergo this transformation – particularly since I’ve made an effort to manage my disease as holistically as possible – she’s witnessed the unfolding of a remarkable inner strength. That as I invest in healing, my discipline and self-awareness set me apart and give me that unique strength I’d always sought even as a little girl.

Her words moved and encouraged me. As a result of this friend’s wisdom, I am consciously practicing seeing myself differently. Not as sick or weak, but as resilient and strong. Strong enough to face each day without knowing what the pain will be like. Strong enough to eschew aggressive medications, trusting that healing the source of the problem will be better in the long run than masking symptoms. Strong enough to live without knowing what my physical capabilities will be in a year, or five years, from now. I might not be arm wrestling any guys anytime soon, but I have a new capacity for strength that reaches well beyond the power in my biceps. I invite anyone else struggling with a chronic illness to take the words of my friend as your own and be encouraged by them.

To all of you suffering from chronic disease, to all who take this challenging, sometimes scary road to healing, know that you, too, are incredibly strong.

On The First Blog Post

A year ago, I was diagnosed with an autoimmune disease called rheumatoid arthritis. A few months ago, I began to use food as medicine to manage my disease and begin to heal my body.

Rheumatoid arthritis (RA, or “Toidis” as I like to call it) is not osteoarthritis, like what elderly people get. As I said, RA is an autoimmune disease, meaning that your body begins to attack its own healthy tissue. Multiple sclerosis, Crohn’s disease, Celiac disease, and Systemic lupus erythematosus are also autoimmune diseases.

In RA, the healthy body parts that get attacked are your joints. This leads to pain, swelling, stiffness, and eventually permanent joint damage. Other effects of the disease include fatigue, dry eyes, and a host of other ailments. Add the side effects from the multitude of medications it takes to manage this condition, and you’re looking at one big, scary diagnosis.

The doctors help by telling you that you’ll be sick and in pain for the rest of your days, followed up by a list of scary-sounding medications to try. I was given very little information about the disease itself, my prognosis, or anything I could proactively do to help myself.

I discovered the idea of managing inflammation with food from my mom, who had taken a class that empowered people to go gluten- and dairy- free to improve a range of health issues. I was reluctant at first – the idea of cutting out entire food groups, not drinking beer any more, and changing my eating habits seemed too overwhelming. But I made the decision to give it a try.

Over the past year, I went from loosely avoiding gluten and dairy to dabbling in the Paleo diet to strictly adhering to the Paleo “Autoimmune Protocol” (AIP) for the past three months. The past year also saw me trying a couple of medications in a variety of combinations that landed me with horrible withdrawal that I am still struggling with (prednisone) and diminished kidney function (sulfasalazine).

I start this blog still very much a work in progress. It is a challenge to see the daily ups and downs as an overall healing process. The very idea of healing autoimmune disease is brushed aside by the medical community, but after just a few months of focusing my energy on healing through food, sleep, stress management, and light exercise (and not being perfect or very consistent with any of these aspects!) I am happily on one remaining medication and managing some residual joint inflammation in my hands. There are a ton of great resources on the web and in my local library that have helped me start and continue on this journey.

A lot of people doing Paleo diets take up blogging. I think it’s because you spend so much time cooking, eating, and cleaning up after those activities that it makes sense to document it all in the hope that someone else will benefit from what you learn.