Eileen’s Healing Story Part 1 (Rheumatoid Arthritis)

“I’m sitting on a beach…staring at the sky and letting the tidal pull of my own future wash over me and draw me forward.”
~ Roseanne Cash

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Where I Started

This was the very first post I wrote on my blog on January 12, 2013. I write about my rock bottom with rheumatoid arthritis and the beginning of reclaiming a beautiful life. If you are at rock bottom right now, I want you to know there’s hope. For updates on my journey, scroll to the bottom of the post.

Onset

One morning, one year ago, I put on my shoes and noticed the side of my foot hurt, right at the base of my pinky toe, and I thought, ‘Well, that’s weird,’ and went to work. Then a few mornings later, I got out of bed and it hurt to stand on that foot; the whole ball of my foot was tender. So, I went to work and gave myself a detailed foot and calf massage (sometimes it helps to be a massage therapist; sadly this time it didn’t diminish the pain).

A few days later, the pain spread to my other foot, and I tried all sorts of things over the coming weeks – icing my feet, Epsom salt baths, orthotic supports, stretching, chiropractic adjustments, acupuncture, getting worked on by other bodyworkers. Nothing helped, and soon I was taking ibuprofen to get through the workday, and I simply hoped the pain would go away with time. Shoes became uncomfortable because they felt small on my feet, so I switched to sandals.

Then the pain moved to my hands – one finger at a time would stiffen up; I couldn’t bend it, and any pressure hurt; it would stay swollen for a few days, fade away, and another finger would swell and take its place. As soon as it hit my hands, I knew what was happening, but denial’s a powerful thing. I took more ibuprofen and kept working, creatively avoiding using whichever finger was swollen that day. Then one night, my shoulder seized up, with such excruciating pain that I couldn’t sleep and I couldn’t move without gasping and crying. Denial was over. It didn’t take much research to learn that I was a textbook example of rheumatoid arthritis.

Over the next few months, the joint flares ricocheted around my body unpredictably, putting a wrist into a splint one day, a shoulder into a sling another; freezing my knee so that I couldn’t walk one night, freezing my jaw so that I couldn’t eat on another. On top of that, there was a growing stiffness in my body, especially in the mornings, where it hurt to move at all. Some stiffness would last the entire day; I felt like I was 90 years old, instead of 43. I became more and more tired, and also developed severe dry mouth, which is another common symptom of rheumatoid arthritis. I cried every day, as my husband held me and kissed my tears away.

Dietary Healing

I hoped to avoid immunosuppressant medication. I spent hours on the internet, researching alternative solutions and every website led me to a discussion of leaky gut syndrome, and healing through diet. This didn’t come as a surprise to me. I had digestive pain on and off my whole life, and it had gotten worse in the prior year. The notion that we are what we eat makes sense to me; food is the one medicine we all take every day to survive. Although I ate a relatively healthy diet, it was far from perfect, and included all the big culprits: wheat, sugar, and packaged foods (the fact that they were bought at the health food store notwithstanding.)

So, I began my experiments. First, I gave up sugar and wheat, and I felt better for a few days, but the pain returned. Then I tried a rotation diet, which had no impact whatsoever. So, I tried an elimination diet, removing foods one at a time. I always got better for just a few days, before the pain returned again. It seemed my body reacted to everything I ate, and I started to fear food. That’s when I learned of the GAPS Diet by Dr. Natasha Campbell-McBride. She says this about food allergies and intolerances:

“Many people try to identify which foods they react to. However, with damaged gut wall they are likely to absorb most of their foods partially digested, which may cause an immediate reaction or a delayed reaction (a day, a few days or even a couple of weeks later). As these reactions overlap with each other, you can never be sure what exactly you are reacting to on any given day. Testing for food allergies is notoriously unreliable: if one had enough resources to test twice a day for two weeks, they would find that they are “allergic” to everything they eat. As long as the gut wall is damaged and stays damaged, you can be juggling your diet forever removing different foods and never get anywhere.”

That seemed to summarize my experience completely. The GAPS Diet is a temporary diet, designed to heal your gut, and therefore your body, with the expectation that you can transition off the diet once your body has healed. It’s a very restricted diet, so the fact that it was temporary appealed to me, and when I compared a lifetime with an autoimmune disease to two years on this diet (the average time it takes an adult to heal), that seemed like a very fair trade.

Results:

• Within a week of starting the diet, the flares began to diminish in number and intensity, and my shoes fit again.
• Within a few weeks, the severe dry mouth went away, my bodywide stiffness lessened, my energy increased, and I returned to work part-time. (Caveat: I didn’t have the strength for massage therapy, but I specialize in lymph drainage and craniosacral therapies, which are light touch healing modalities. I returned to work in that capacity.)
• Within a few months, flares became rare, and when they did come, they were moderate. My bodywide stiffness became intermittent, usually worse on days when storm fronts moved through town. My energy levels returned to normal and I went back to working full days.
• My health improved in other ways as well. For the past 3 years, I had been experiencing perimenopausal symptoms: menstrual irregularity, water retention, mood swings, headaches, and cramps. They all went away with this diet. I also had chronic styes around my eyelids for the past decade, and they cleared. People began to compliment me on my skin, telling me it glowed. And all digestive pain dissolved.
• 5 months later, what remained was a low-grade inflammation in my joints, preventing their full strength and flexibility, but with improved range of motion and significantly less pain than prior to the diet.
• I was 99% compliant on the diet, the only exceptions being when we traveled and I couldn’t control all of the ingredients in my food. Pain is a strong motivator; I wanted relief too much to cheat.

Complementary Treatment

You’ll notice that my website talks about healing through diet…and more. This is because the authors of the healing diets all recommend complementary practices to support the healing process. It might be exercise, detoxification, supplements, or sunshine. I’ll talk about their recommendations more when I contrast and compare the diets in my next blog post. For now, I’ll tell you what I have done (and continue to do) to support my dietary healing:

• Over the summer, I sunbathed for 30 minutes daily whenever possible, to obtain Vitamin D. There is a link between Vitamin D deficiency and autoimmune disease.
• I take the following anti-inflammatory supplements: black currant oil, curcumin, krill oil and cat’s claw. Combined with my diet, these supplements have allowed me to drop to just one aleve tablet twice daily.
• Magnesium is very hard to get through food, so I take this supplement to boost my levels and prevent the leg cramps that are common with autoimmune conditions.
• The GAPS Diet does recommend probiotics and digestive enzymes, but gives you the option of getting them through food or supplements. I chose food: raw unpasteurized sauerkraut doubles as both.
• I meditate daily. When I was in the most pain physically, it was the hardest to bear emotionally. Meditation was the one thing that made me feel better. It wouldn’t alleviate my physical pain, but it replaced emotional turmoil with a feeling of peace. I’ve come to love that feeling, so even though I don’t need it for the same reasons now, I continue to meditate every night.
• I’m part of a wonderful community of bodyworkers, and they, along with my clients, family and friends, have been beautifully supportive of me during this process. My body is too sensitive at this point to enjoy receiving massage, but I found I wanted the comfort of turning my hurting body over to someone else for an hour, to be nurtured and cared for by another professional. I chose the gentleness of energy work. These sessions weren’t curative, but they were supportive and always left me feeling lighter and loved.
• I try to do something detoxifying at least a few times per week: juicing, detox baths, lymphatic self-care, coffee enemas, etc.
• Exercise has been a challenge. When the rheumatoid flares were at their peak, almost any activity would set them off. Now, I find that I enjoy exercise, so long as its moderate. My favorite routine is the exercise bike, followed by gentle yoga. As someone who used to love strenuous hiking, kayaking and strength training, I hope to get back to those activities someday. In the meantime, I’ve learned to accept what my body needs now, which is gentleness, not strain.

Next Steps

5 months into the GAPS Diet, I hit a healing plateau. I felt much better than I had before, but was no longer moving forward. In my research into alternative healing, I learned about a drug called Low-Dose Naltrexone (LDN). It’s a very mild medication rarely used by rheumatologists, but often recommended by alternative health practitioners in combination with dietary healing. A 50mg dose of Naltrexone was originally created to help heroin addicts through withdrawal. Surprisingly, they learned that a low dose of this medication (1.5 – 4.5mg) helped regulate the immune response in people with autoimmune disorders. At such a low dose, most people don’t experience side effects. Some people even go into remission on this drug. That didn’t happen for me, but I would say the LDN reduced my morning stiffness. It’s enough of an effect that I’ll keep taking it, but I need to do something else to relieve the inflammation altogether.

So, what’s next? At the peak of my rheumatoid pain, I felt like huge waves were rocking through my body and knocking me onto a rocky shore. Now, I can still feel the waves, but they’re growing smaller and smaller. My goal is to reach “still waters”. I’m going to continue with the GAPS Diet, but I am adding the Paleo Autoimmune Protocol. My hope is that I will be able to identify the remaining foods that are causing the last of the low-grade inflammation.

Simultaneously, I’m starting this blog. I want to join the growing testimonials of people with autoimmune conditions who are improving their autoimmune health through diet. This journey has been life changing, and I want to share what I’ve learned (and continue to learn) along the way. In pharmaceutical trials, a medication is considered effective if it reduces symptoms even by 25%. Dietary healing has reduced mine by about 80%. I went from living with an excruciating level of pain, to a manageably low level, and more healing will come.

Tom & The Turtle

I realize this post is long, but I want to end it with two photos. The first is my favorite picture of me and my husband, Tom. This is the man who kisses my tears away, and far more often, makes me cry with laughter:

And this is a photo of us scuba diving this summer, one month into the GAPS Diet. We had planned the trip a year in advance and chose not to cancel. We drove from NC to FL, carrying a cooler of food with us, and renting a condo with a kitchen, so that I could stay on the diet. Although the healing had begun, I was still experiencing flares, and the road trip was difficult. At the same time, we both needed to experience something beyond my illness. Scuba diving with sea turtles was on our “life list”, and it was worth the struggle, to experience this wonder and joy:

Advice from a Sea Turtle:

Swim with the current
Be a good navigator
Stay calm under pressure
Be well traveled
Think long term
Age gracefully
Spend time at the beach

(quote from a magnet we bought in Florida)

Updates

This is my very first blog post, and showed where my story began.  Since then, many years have passed. Here are some updates to my healing journey: