On Finding What Works

 

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 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.

Six Month Update

It’s time for another update, because mid-January marks my six month anniversary of doing the Paleo Autoimmune Protocol (AIP)!

 A Quick Recap

I was taking four medications for my RA just before starting AIP. I had been mostly Paleo for two months prior. My doctor recommended I wean off prednisone due to the side effects associated with using it for too long. I had a post-prednisone flare that made my whole body achy and weak, and my fingers and wrists sore and swollen. The resulting adrenal fatigue left me exhausted and unable to get out of bed.  I think that flare helped me come to the decision to start AIP full force – I started AIP the week after. For my four month update, click here.

Current Pain and RA activity

My pain and swelling are finally getting to a point where I feel they are managed well. I say “finally” because I did not experience steady improvement over the past months on AIP – there were ups and downs, including a particularly painful few weeks in late November. That flare faded and I continue to improve, feeling the best I have since starting AIP. I use a single medication (Plaquenil). Last year (before dietary changes) I tried to use Plaquenil alone for managing my RA and it was not sufficient, so I am thrilled that AIP + Plaquenil is managing my RA well, now with consistent improvement. I take curcumin (turmeric) supplements in the morning and night, and this seems to help with overall inflammation as I continue to heal my gut. Morning stiffness is still a reality, but it’s quite manageable and fades as I get up and move around.

Energy Level

My energy is slowly coming back to me! During my post-prednisone days, my adrenal glands struggled to get back on their feet, and for months I felt fatigued and exhausted. I had low blood pressure, and would often feel light-headed and short of breath in the mornings. I didn’t feel like exercising – every once in a while I could manage a walk.

Now after six months of being dedicated to 8-10 hours of sleep per night and eating very well, I finally feel my energy coming back to me. I am able to handle activity without feeling so drained. I even started light weight lifting again, something I’ve always enjoyed. In a fit of optimism, I’ve been perusing new bikes on Craigslist in excitement for summer activities.  Having my energy back has completely revitalized my outlook toward healing – I’m so grateful to have it back!

Digestion

Digestion has always been a problem for me. Unfortunately during the first few months of AIP, my digestion seemed to get worse. I quickly lost weight and felt like despite all the amazing, nutritious food I was eating, I wasn’t getting nourished. I experimented with cutting out foods high in FODMAPs for a few weeks and experienced no change. I alternately gave up coconut and starchy veggies, trying to find the key.

This fall, I began supplementing with Betaine HCL  and pancreatic digestive enzymes, as my rheumatologist suggested. She thought that low stomach acid might be a problem for me, and indeed it was. My digestion has slowly improved, though it still has a ways to go. I’ve stopped losing weight and feel like the wonderful nutrients I am eating are being absorbed.

What’s Next

If my RA symptoms and digestion stay on the road to recovery, I will likely try reintroductions in the coming months. I have no reason to rush these – I have adapted well to the restrictions –and so will take reintroductions slowly. As my energy continues to improve, I plan to invest more time in exercise and will continue to prioritize sleep. I am incorporating detox baths into my weekly routine – it’s amazing that something so simple can prove so effective.

Another future possible step for me is to meet with a Naturopath and get some functional medicine tests done to take the guesswork out of my ongoing digestive issues. I’m working on crunching the numbers to see if this can fit into my budget.

Do I want to get off my final medication? Of course! But I am not going to rush this. I want to allow my body this healing period and avoid spiraling into a withdrawal-flare by going too quickly. I meet with my rheumatologist in a few weeks and will discuss my next steps with her.

It’s crazy that I’ve gone six months without a sip of wine or a drink of coffee or a piece of chocolate – all those things that I thought I couldn’t live without. At the beginning, I never thought I would be able to commit to a month, let alone six. And I am ready to commit to much more. Onwards!

On Strength

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.