The Arthritis Dietitian: Rheumatoid Arthritis and a disease from IKEA

I grew up in Medellin, Colombia, the City of Eternal Spring, where the weather is always perfect but drug cartels waged wars through the late 80s and early 90s. Through those uncertain and stressful teenage years, I tried to live a healthy life. I loved jogging and rumba aerobics (now known as Zumba), and was grateful to have wholesome, fresh food available.

Despite my healthy lifestyle, at 22 years old, I was diagnosed with rheumatoid arthritis (RA) and Sjogren’s Syndrome. With no high-speed internet or support groups, I had to figure out what was happening to my body on my own. I felt lonely and embarrassed to be limping like an old lady; no one else my age had to suffer such intense pain.

But I was lucky to have a confidant: a young Pakistani-Canadian man I met online, dial-up style. He promised to take care of me, and he did! We had a dreamy traditional Pakistani wedding and started our life in Ontario.

I thought the best way to adapt to a new country was to hide my pain, suck it up and move on. I followed my doctor’s prescription for my RA and forgot about everything else. I pushed through my first Canadian winter, worked hard to validate my degree as a registered dietitian and focused my efforts on helping seniors in long-term care homes. I wanted to feel normal without thinking about my disease. But who was I kidding? Autoimmune diseases are control freaks, and mine controlled where I worked, who I was friends with and what events I could attend. It even decided when I could have a baby – not in my 20s as I’d hoped, but in my mid-30s.

After 13 years of marriage, my husband and I were blessed with our miracle boy. My rheumatologist said I would have an arthritis flare 8-10 weeks postpartum. I had at least two months to breastfeed my baby, lowering his risk for infections, and inflammatory and autoimmune diseases later in life. Breastfeeding would protect my child from the kind of pain I endure regularly.

But just one day after delivering, even while on medication, I had a full-force RA attack and it showed my body no mercy. I felt as though 1,000 flaming needles poked my entire body. It was the kind of pain that made me doubt my abilities as a new mother. I refused narcotics; I wanted to be alert for my baby. The nurses did everything they could to help me feed him. We all failed miserably.

The pain from breastfeeding was so unbearable that the incision from my c-section felt like a paper cut. On top of that, I wasn’t producing enough milk and my baby’s blood sugar was dropping. I had no choice but to supplement with the “F” word (i.e. formula). And despite their attentiveness to both me and my son, the maternity ward staff dismissed the excruciating pain I suffered from my RA. My flare-up caused congestive heart failure and pulmonary edema (i.e. fluid in the lungs), forcing me to leave my two-week old newborn at home while I stayed in the hospital.

Hopelessness and despair invaded my whole being. While I learned that motherhood was more than just breastfeeding, all the little things I had to do for my son – changing his diaper, bathing him, pushing his stroller – took out of me the little energy I had left. I went from being a “high-risk” pregnancy case to a nobody in the healthcare system. I had poor access to support on how to care for my child while living with chronic pain.

But in time, I survived the postpartum pain and learned to take back control. 

I started a new therapy that helped with controlling my pain and ability to perform activities for daily living. I became more comfortable with my English (thanks to joining a Toastmasters Club) and my quirky, witty Latina personality began to flourish. I decided to blog about my experience, my views on nutrition and holistic approach to managing RA. 

Most importantly, I connected with fellow RA warriors and joined online support groups that helped me get my life back on track. Last year, I participated in an RA-focused workshop. I met other RA warriors and arthritis stakeholders, including a recognized RA patient advocate, Lene Andersen, from “The Seated View” who guided me and supported me on those days of despair during my pregnancy. Online forums are a great way to connect with others at any time. Still, there is something about face-to-face conversations that elevate the connections with other RA survivors and potential stakeholders that are willing to listen to our journeys to improve services for patients with chronic illnesses.     

Now I use humour and sarcasm to cope with my pain, and laugh alongside my peers. I truly believe in the saying that when you smile, the whole world smiles with you. Sure, there are hardships, sad moments, times when you feel like giving up. But then I look at all the meaningful connections I’ve made in spite of RA – and even because of it. I wouldn’t have some of the most amazing friends if it wasn’t for my rheumatic condition. They give me a sense of solidarity. I find comfort in chatting with them, talking about my symptoms and having the whole room nod in approval. “Yes, me too.

Learn more and donate to support our community at arthritis.ca and sjogrenscanada.org. You can also read more from me at www.arthritisdietitian.com.