Heather’s Autoimmune Story

MEET HEATHER

Originally from rural Illinois, I moved to the San Francisco Bay Area two decades ago, met my now husband, and decided to call California home. My husband and I are empty nesters who are remodeling our downsized home. When I’m not in a construction zone at home, I’m in a construction zone at work—since I’m a construction manager for my local community college. I love traveling, food and stories in any form: movies, books, television, etc.

 DIAGNOSIS

I am fortunate that my Rheumatoid Arthritis was diagnosed easily and early. The summer I turned twenty-one, I started sleeping hours on end in the middle of the day and getting joint pain, which I initially thought was related to my workouts. My sisters and I joked I may have arthritis, but at that time, I didn’t know someone young could have arthritis.

When I returned to college for my fall semester, I knew something was wrong: everything hurt, even the bottoms of my feet felt inflamed, making it painful to walk. I went to the health clinic on campus; they tested my blood for RA factor, which was positive; and then they referred me to a local rheumatologist, who diagnosed me. That was twenty-two years ago.

For the first several years, I endured a lot of pain throughout my entire body as I worked with my doctors to find effective medication. I was a mostly passive, naive patient, but I refused to take steroids. I used a combination of naproxen, methotrexate and plaquenil until my immune system was overwhelmed, and I developed shingles and numerous (hideous) fever blisters inside my mouth and nose and on my lips. Then I started cycling through biologics: Enbrel, Humira, Orencia and Remicade. Humira was effective for me until my disease figured out a way around it, and I again endured a lot of pain. Then my doctor recommended that I take Rituxan, which works by depleting the level of B cells. Rituxan relieved all my symptoms for five or six years, but I developed a chronic lung infection and cough, which several doctors referred to as a smoker’s cough even though I’ve never smoked. I’m currently not taking any medications and am managing my disease in other ways. So far, my bloodwork and physical symptoms show that I’m in remission.

 LIFE CHANGE

For better or worse, it changed the whole course of my life. I graduated with an English degree, specifically in writing, and planned to be a starving artist, waiting tables and writing a novel. But I didn’t have the physical strength for that, and I needed good health insurance and fast. I ended up taking a temporary receptionist position for a family-owned general contractor who was willing to train me, and I launched a new career and met my now husband at work.

There was a time when I thought I had only one purpose, but now I know happiness can be found in any line of work. What means the most to me is performing my job—whatever it is—with integrity and in community with everyone working with me. I like building positive relationships and good collaborations.

 HEALING

For many years, I used only the medications prescribed by my doctors. However, two years ago, I started a whole-foods, plant-based diet, and I believe it’s part of why I’m in remission without medication. I also do mostly low impact exercise and ten minutes of daily morning and evening yoga. I read scripture and meditate 4-6 times a week, depending on the week. I have a nightly gratitude practice with my husband (where we tell each other five things we’re grateful for during or after dinner), and I discovered water-based CBDs a little while ago, and I think they are wonderful.

Recovery requires a lot of patience. Each time I switched medications, I had to wait 2-6 months (depending on the drug) to know whether it was going to work. Since the goal is to be pain free—with a huge spectrum between perfect and bedridden—I never knew whether a drug that was helping would eventually get me to perfect. Only Humira and Rituxan ever got me to perfect (until my body couldn’t tolerate them anymore).

Diet changes also take time. There are multiple diets to try and modifications within each of those diets to adjust. It’s a lot of trial and error, and therefore it’s a lengthy process. I’m two years into my diet changes, and I’m still listening to my body and making modifications, and honestly, falling off my diet on occasion.

 STRUGGLE

It has changed over the years. While the physical pain is hard, and it has made me cry and be short on patience at times, I was able to manage it okay—in part because my employer allowed me to telecommute 3-4 days a week for many years (for reasons completely unrelated to my health). I’m not sure I would have survived without that luxury when my pain levels worsened.

At times, I’ve been resentful of all the work I’ve had to do “just to be normal.” However, when I talked to my sister several years ago, I realized that while we have different health struggles, our emotional response is the same: “I just want to give up sometimes.”

I’ve also felt isolated. However, I’ve realized that while my disease and its limitations are something I bear alone—that I’m not alone. Struggle is a universal human condition that can connect me to others if I allow myself to be vulnerable. But being vulnerable is hard. For many years, I didn’t talk about my disease and didn’t want anyone to know about it. I didn’t want people to see me as my disease. I suppose at this point—having lived more years with rheumatoid arthritis than without it—I’m more comfortable being open about it.

INSPIRATION

“Be still, and know that I am God” (Psalm 46:10) helps me in so many ways.

I’m task-oriented by nature and therefore need to be reminded to stop sometimes. Also, when I start meditating, I almost always quiet my mind by repeating this verse. When I feel overwhelmed, or when I feel like I’m not enough, repeating this verse in my head reminds me I don’t have to do everything. I can just be still. What I’ve learned is I don’t have to stress about the details. When I relax, things have a way of coming together without my managing every detail.

Find Heather | @heather_chierici