Living with Autoimmune Disease

Guest Post by Eileen Laird: Paying Attention

May 14, 2013 in Living with Autoimmune Disease

It’s a fact of human nature that we tend to notice what’s wrong, more than we notice what’s right. When something gets better, we often forget it was ever a problem. I’ve been a massage therapist for 12 years and have seen this many times. A client will come in with a sore shoulder. I’ll work on it during our session. When the client returns the following week, I ask about the shoulder, and they say, “What do you mean?” I remind them it was sore last week, and they say, “Oh, right! I forgot all about it. It felt better the next day.”

This same tendency happens with autoimmune disease symptoms. Although there are overnight success stories in the paleo community, for most of us, improvements are slow and incremental. I have rheumatoid arthritis. In the past year, my symptoms have improved 90%, but those improvements were only notable month to month, not day to day. The way I noticed was by keeping a symptom journal – two actually. One is a daily journal where I write down how I’m feeling and also anything new I’m doing to try to improve my health. The other is a monthly journal – at the end of each month, I review my daily journal and summarize. It’s this second journal that shows my progress, and keeps me heartened and motivated. There have also been times when it has shown plateaus in my progress, and that is when I look for the next step in my healing protocol. For example, after 6 months on the GAPS diet, my progress plateaued, so I went on the Paleo Autoimmune Protocol and I started to improve again.

I’m not alone in finding a symptom journal valuable. Dr. Terry Wahls keeps one herself, and Mark Sisson even sells one.

What to Include in a Daily Symptom Tracking Journal

Sleep quality: Did you fall asleep easily or did you have insomnia? How many hours did you sleep? Did you wake often or sleep deeply? Any muscle cramps or pain that woke you?
Waking state: Did you wake feeling refreshed or did you feel groggy? Any morning stiffness? If yes, what level and how long did it last?
Pain: Rate your pain on a scale of 0-5, and document where in your body you are feeling it.
Mental state: Are you experiencing brain fog or is your mind clear? How is your memory? Concentration?
Emotional state: Are you happy, sad, angry, depressed, numb? Is your mood stable or swinging from one state to another?
Medication: If you are on any PRN medications (meaning that you take them only as needed), write down when you need them and what dose. If you are on daily prescribed medication, your need for these might change as you heal. Work with your doctor to see if you can reduce or eliminate these safely. The ability to do this varies based on the individual and purpose of the medication.
Energy levels: Do you get tired during the day? Do you need a nap? Do you feel caffeine-dependent? Are you hyperactive? Or is your energy strong and balanced throughout the day?
Exercise: Are you able to exercise? If yes, what form did you do today and for how long?
Digestive state: Any bloating? Indigestion? Constipation? Diarrhea? Discomfort?
Skin condition: Any increase or decrease in rashes, acne or eczema? Is your skin drier than usual or starting to glow with health?
Dietary changes: Did you start any new supplements? Any new foods? Did you remove any new foods from your diet? Did you eat out at a restaurant (often a source of hidden ingredients)?
Lifestyle: Did you meditate? Take time to relax? Do something that brought you joy? Take a bath? Get outside? Endure a stressful situation?
Detox: Have you made any changes to remove toxins from your body or your lifestyle? Epsom salt bath? Coffee enema? Start the no-poo method? Start using homemade beauty products instead of storebought?
Mark the day: Keep track of how long you’ve been on the Paleo Diet and/or Paleo Autoimmune Protocol. It’s empowering to see yourself pass markers like 30 days, 6 months, 1 year.
Monthly summary: At the end of the month, summarize how you felt and see how it compares to prior months.
Documentation: You can use a notebook and keep this journal by hand, or use any word processing program. There are also free websites you can join, if you prefer to do it online, and Symple is a free app for the iphone.
Laughter is the Best Medicine: This blog is a fun one to follow.

Gratitude Journal

No matter how difficult our life is, there is always something beautiful happening as well. Sometimes, we are so immersed in our own pain, we can’t see it. A gratitude journal is a practice of looking beyond ourselves. Adyashanti is a meditation teacher who tells the story of a couple who is fighting at the beach. They’re so mad at each other, they experience nothing else. They can’t feel the sun warm their skin, smell the salt air, hear the ocean waves, see the sandpipers dancing along the shore, or hear the children laughing as they build a sandcastle. Their vision has shut out the world.

As someone who has experienced excruciating pain and cried every day as I came to terms with having such a scary diagnosis, I know what it feels like to live in that vortex. It’s not a pleasant place to be. So, I started a gratitude journal. Every day, I write down 3 things for which I’m grateful. Here’s the catch: be specific and try and choose something different every day. Sarah Ban Breathnach, author of the book Simple Abundance, says: “We think it’s the big moments that define our lives – the promotion, the new baby, the renovated kitchen, the wedding. But the narrative of our lives is written in the small, the simple, the common. The overlooked. The discarded. The reclaimed.”

Here are some excerpts from my gratitude journal:

The way the valley smells sweet when the trees start to bloom in the spring.
My husband kissing me on the cheek for no reason.
On my walk today, a neighbor’s cat came running toward me, purring all the way.
Last night, I slept without pain for the first time since the onset of RA.
A friend invited me over for dinner and gathered recipes online to be sure everything she served would meet the autoimmune protocol.
Seeing a comic that made me laugh out loud.

There is nothing too small for your gratitude journal. It’s about noticing the moments that bring joy, peace and beauty into our lives.

Let it Out Journal

As a writer, this is a form of journaling that has helped me my whole life. If you have an autoimmune disease, it’s by nature an emotional experience, and one that friends and family don’t always understand. Your journal is a place where you can write whatever you’re thinking and feeling, without censoring yourself. It can be a powerful way to let go of the pressure than can build up inside. You don’t even need to know what you’re going to write ahead of time. Just put pen to paper, or fingers to keyboard, and let the words flow.

~~~

My blog Phoenix Helix focuses on healing autoimmune disease through diet and lifestyle. The Phoenix represents rising from the ashes. The Helix represents the magic of epigenetics – our ability to change the expression of our genes and therefore our health.

Tags: autoimmune, gratitute, healing, journaling, paleo
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Real People, Real Paleo: Alison Golden of PaleoNonpaleo.com

May 8, 2013 in Living with Autoimmune Disease, Real People, Real Paleo

“Real People, Real Paleo” is a series of posts written by real people who were inspired to share their paleo story with you. There is such diversity in the challenges that bring us to a paleo diet and lifestyle and in what we hope to achieve by adopting them. These stories are intended to be a place of inspiration, written by real people, showing the diversity of our needs and our approaches to this way of eating and living, and explaining how each individual’s implementation of paleo meets their needs. By sharing these people’s stories with you on my blog, I hope to redefine what paleo success is. I do not believe that eating paleo is purely about losing weight, gaining muscle, and having 6-pack abs. I believe that paleo is about being healthy enough to thoroughly enjoy life, whatever that means for you, and about sustainability for our entire lives. If you are interested in writing up your story, email me at thepaleomommy@gmail.com

I seem to have spent much of my life sick with various illnesses – typical childhood illnesses which I got far more often and far more severely than other kids my age. Viruses, bacterial infections were the norm, hospitalization, frequent doses of antibiotics.

But it was endometriosis, diagnosed at the age of twenty-five, that, two decades, five surgeries and several rounds of in-vitro fertilization later, dominated my medical history.

Endometriosis is a condition where endometrial deposits attach to areas outside the uterus, causing pain, scar tissue, and infertility.

Not much more about the cause of endometriosis nor development of its treatment has materialized since I was diagnosed but there is a clear association between endometriosis and autoimmune disorders.

Autoimmune diseases appear in far higher order among women who are diagnosed with endometriosis than in the general population.

“Women with endometriosis also had higher than expected rates of autoimmune inflammatory diseases including systemic lupus erythematosus, Sjögren’s syndrome, and rheumatoid arthritis, as well as multiple sclerosis.”

Another study concluded that “endometriosis shares many similarities with autoimmune diseases such as rheumatoid arthritis, Crohn’s disease, and psoriasis. These similarities include elevated levels of cytokines, decreased cell apoptosis, and T- and B-cell abnormalities.”

And some contend that endometriosis is an autoimmune disease itself.

So after I discovered that, while improving things in terms of my pain and energy, following a basic paleo template did not eradicate it sufficiently, I decided to go to the next level and adopt the paleo autoimmune protocol (AIP). It seemed the sensible thing to do.

I had noticed that eliminating wheat, sugar, and particularly dairy under the basic template had resulted in big improvements, but it was eliminating fruit that took them to the next level.

After a strict month of AIP, I re-introduced various fruits and noticed bloating, digestive issues, insomnia (then energy crashes) and a re-emergence of the pain I typically got mid-cycle.

I had been able to reduce the mid-cycle pain that had controlled my life for decades to almost nothing under the AIP so this was significant.

Further re-introduction testing followed and a sensitivity to nuts also presented itself (digestive problems). Nightshades, especially potatoes and tomatoes, would give me ulcers, and painful, sensitive areas of skin on my head, my face, underarms.

While I had been aware of these last two issues, until I eliminated and re-introduced the foods in question, I had not connected them to those foods, or indeed, any food at all, so that was enlightening.

I removed all these items from my diet on a long-term basis and have continued to see improvements that I attribute to healing over time. As long as I keep to this plan, I have no health issues at all.

At times over a two-year period, I have attempted to re-introduce certain food items and have met with varying degrees of success. I can tolerate a small amount of most of the problem foods on an occasional basis, but cannot yet introduce them into my daily diet.

I am particularly careful with fruit and dairy as they seem to give me the most problems, however, cutting down the amounts of these foods that I eat is a small price to pay for the huge increase in quality of life I’ve experienced.

Professionally, I have achieved far more since undertaking the AIP. I have less pain and more energy, I can respond to intense demands as needed, and I simply am able to enjoy my life more.

I’ve found following the autoimmune protocol to be enormously empowering in terms of identifying problem foods and seeking to manage a reduction in my symptoms. It has been far more effective than any conventional and invasive medical treatments offered in the past.

Without the AIP, I would have been counting the days to menopause, and even then, with just a slight hope of relief.

Sometimes there is grief about having to eliminate so many food items but after a while, and with practice, like all losses, I’ve found we make progress and come to resolution. And, if we are lucky, we can heal to the point of re-introduction of those foods without penalty.

AIP is pretty darn powerful.

Alison Golden writes on the topic of paleo over at Paleo/NonPaleo. She aims to share ideas, inspire and motivate readers by teaching them how to live paleo in a non-paleo world. She is also the author of the bestselling book, The Modern, No-Nonsense Guide to Paleo, a unique tool that gives the reader hundreds of strategies to navigate the learning process to successful paleo living.

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Guest Post by Angie Alt: How Getting Sick Made Me Passionate About Dirt

April 22, 2013 in Living with Autoimmune Disease

Angie Alt is wife, mother, world traveler & blogger. She’s also a warrior in the autoimmunity war. Angie confronts three autoimmune disorders each day, including Celiac Disease, with powerful management techniques like AIPaleo & the Paleolithic lifestyle. She blogs regularly about the emotional side of tackling autoimmunity, adopting Paleo, and how it impacts her, her family, & their way of life. You can read more by Angela Alt at her blog and connect with her on Facebook.

I’ve been writing regularly for The Paleo Mom for a while now and in a few short weeks I will celebrate my first Paleo-versary. All that time I’ve been slowly healing, learning, and growing as a person. Along with my first few years as a parent and my time living in West Africa, this past year has been one of the most dramatic periods of personal growth in my life. The road from illness to health has deeply impacted my values . . . I’d go as far as saying that being sick with autoimmunity made me passionate about dirt.

It started with illness itself. I was deep in it. Deep, deep. Long nights in lonely hospital beds on three separate continents, hours upon hours in overburdened ERs, protracted, solitary waits in doctor’s offices . . . I had a lot of time to think. Naturally, I thought about illness, not just my own illness. I thought about why so many of us have gotten sick and why we can’t seem to get well. It did not take me long to understand that our “healthcare system” was more like a “sick care system.”

When I got a diagnosis, Celiac Disease, I wasn’t all that surprised that it was a food causing my problems. I would have never put my finger on it, but I’d already spent three years in Africa thinking about how food and water were the absolute foundation for global health. They are the common thread connecting all of us. I’d had this sneaking suspicion for quite some time that this common thread could also probably be the source of much of the illness. I was about to begin learning how they could also be the source of healing.

If the most nourishing foods could restore my health, they had to be produced in the most nourishing environments. The dirt itself had to be healthy. The conditions for the cows, chickens, pigs, and fish had to be clean and happy, if I wanted the nutrients in the meat to serve my body well. The vegetables and fruits couldn’t be covered in poisonous pesticides or pumped full of genetic modifications, if I expected the powerful vitamins and minerals in them to aid my recovery. It went beyond that though. The people growing and harvesting my food deserved safety and security on the job and a decent living too. If I knew them personally and could see they too enjoyed happy, healthy lives, I knew I could trust them to take special pride in their work and produce foods safe for me to eat. As I learned, my values started to change.

I am by no means 100% there yet, but more and more what I eat reflects my values. My plate shows the world what really matters to me. Healthy, well cared for animals, organic veggies and fruits raised in wholesome soil, farmers I know, trust, and am happy to help support . . . these are the things I have come to value as I’ve spent the last year healing and growing outside my former comfort zones.

I think we are in the middle of a rapidly growing food movement. We (especially those of us who have had health recoveries and can speak to the power of it) have an extraordinary opportunity to change how we, as a whole society, eat. This is our moment to speak up, raise awareness, and share how food can change our health and our communities. Changing how we eat, changes everything else . . . how we treat ourselves, our neighbors, our livestock, our water, our soil . . . our planet. I’m no longer apathetic about a subject that is so integral to everything. My hope is to raise my daughter to be part of a generation that won’t need to get sick before they get passionate about dirt.

Tags: Alt, Angela, Angie, autoimmune, dirt, disease, farm, farmer, fruit, illness, importance, nutrients, Organic, paleo, probiotics, protocol, Vegetables
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Guest Post by Angie Alt: The Compromises of Autoimmune Disease

March 20, 2013 in Living with Autoimmune Disease

The following is a very personal story, but I think it is a familiar one in the autoimmune community. After much discussion with my husband, I’ve decided to share here.

When it comes to dealing with the realities of an autoimmune disorder (or multiple disorders, as the case often is), I am a firm believer in a positive outlook. Basically, if I didn’t try to keep it “on the sunny side,” I’d be in trouble. An AIer makes alot of compromises and some of them are heartbreaking. It would just be endless depression if I focused on all that grief all the time.

That being said, recently I’ve had to look closely at some of those losses. I found myself in situations where I needed to articulate my emotions about them. It turned out to be a cathartic exercise and I thought I would write about it for The Paleo Mom, since it is such a big part of living with autoimmunity.

One of my greatest losses was fertility. I actually have a child. My daughter was born when I was in my early twenties. At the time I had no idea that my journey with autoimmunity had begun with the birth of my baby. I was even less aware that I would one day be facing secondary infertility. I’d just had a baby; naturally it did not occur to me that when I was ready to have my second, it just wouldn’t happen.

When that reality did sink in, three years after we started trying, I wrestled with so much pain. My husband and I had been so excited to add to our little family. There were times that disappointment felt like it had swallowed my heart. I didn’t dare walk by the baby clothes in a department store and I never allowed myself to think very long about my daughter without a sister or brother. Those tiny clothes or the idea of happy, giggling siblings . . . both constantly threatened to bring me to tears. I focused hard on how lucky I was to have my beautiful little girl and worked tirelessly not to let envy eat me up when all our friends started having babies and growing their families.

A lot of time has passed since the first glimmers of hope for a new baby. It’s been six years. Half of those years, I was so extremely ill that I could barely think about the dashed hope. Honestly, I often told myself that it was better . . . I could barely care for my own sick body, so it was better that I didn’t have an infant or a rambunctious toddler. Then I got a diagnosis and began the slow climb to health.

Knowing what caused my infertility hasn’t been much of a comfort. As I have learned more and more about autoimmunity, I have realized that despite my best efforts at healing, I might never regain fertility. It might be one of the things that have been irreversibly damaged by AI disease. Worse yet, pregnancy might even pose a huge risk for me, resulting in even greater autoimmune struggle.

I often think, if I could heal enough to recover fertility, I would just endure any autoimmune flares for the joy of a long wanted baby, but that would also mean undoing hard mental and emotional work my husband and I have done. We decided a few years ago, after I’d had laparoscopic surgery, that we were okay with our family being just the three of us. We have concentrated on raising an awesome kid and started to plan for being young empty nesters. Starting over with the sensitive ups and downs is not a simple decision now.

Sometimes my husband and I still talk about the names we had picked out in the beginning, when we thought it would happen easily. I’m not sure if we still love the names or if we have both decided, without any discussion, to stand by them loyally. We’ve accepted the infertility as the collateral damage of autoimmunity, but it seems a bit wrong to give up on the names for a little life we thought would be.

I know at times it seems unimaginable, but I have actually gained some incredible things in my life due to my multiple autoimmune diseases. Even with the gains, I think a big part of keeping a positive outlook is occasionally taking a minute to reflect on all that was compromised.

Tags: Alt, Angela, Angie, autoimmune, Baby, celiac, compromise, difficulty, disease, fertility, flare, Healthy, illness, paleo, Pregnancy, Pregnant, protocol
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