My Diagnosis
My 20-year Sjögren’s story is likely unusual compared to many of my fellow patients. I didn’t look sick, nor did I feel unwell. I felt some strange nerve pain and tingling in my fingers and knees and I was dealing with some anxiety from a stressful event, but I wasn’t searching for an elusive diagnosis.
My astute family doctor decided to check my ANA and rheumatoid factor, two antibodies in the blood which could indicate an autoimmune disease. She referred me to a rheumatologist who did a blood test to look for Sjögren’s antibodies, SS-A and SS-B. At my follow-up appointment, he spoke into his tape recorder and stated, “Mary has Sjögren’s Syndrome” (now known as Sjögren’s Disease). What? I may have heard of it but I knew nothing about it. I quickly did my research on-line and realized that I was probably one of the lucky ones who did not have to endure a years-long process of trying to get a diagnosis.
My Journey with Sjögren’s
My dryness symptoms came on gradually. By the end of the first year, my eyes were getting dry. I started using two prescription products, cyclosporine anti-inflammatory drops and Lacriserts, an ophthalmic insert, which I loved, but are no longer available. I tried many different over-the-counter drops to find a couple which would work.
The following year, I discovered that many foods were burning my mouth or damaging the oral tissues that never bothered me before, such as spicy, salty, and acidic foods, wine, and anything dry or crunchy. I would panic if I didn’t have water with me when I ate. I started using cevimeline, a salivary stimulant which really helped to stabilize my oral tissues and keep my salivary glands flowing. The medication still does not offer sufficient saliva to prevent all dental decay or allow me to eat all foods, but it provided a stable flow of saliva at mealtimes and for several hours per day. I dealt with many dental issues: numerous cavities, receding gums, thinning enamel, and cracked teeth. By my tenth anniversary with Sjögren’s, I had 14 crowns in my mouth.
As far as other symptoms I also dealt with joint pain and inflammation, chronic sinusitis, sinus surgery, and gastrointestinal symptoms such as slow motility, leaky gut, and acid reflux. I changed my diet when I realized that I needed to stay away from pro-inflammatory foods. My rheumatologist found some abnormal proteins in my blood that could be a precursor to a blood cancer requiring regular monitoring by a hematologist. Also, fatigue has increasingly become a challenge especially late in the day.
After 20 years, I feel that I have gone through enough trials and tribulations dealing with my symptoms, that I have found the treatments and daily routine which work best for me….as long as I stick to it. I have mastered my self-care! Of course, adjustments may be needed along the way.
The Mosaic of my Life Experiences since my Diagnosis
At the same time as I was dealing with all the symptoms and potential treatments of Sjögren’s, I was living in a new city, and I knew very few people. I was at a point in my life when I needed something new to sink my teeth into. Maybe my Sjögren’s diagnosis provided the opportunity to find a new purpose in my life. There was no support group where I lived in northeastern Ohio, so I partnered with the Sjögren’s Foundation and started a very active group which met 5 times a year and organized an annual Sjögren’s Walk. I was asked to join the Foundation’s National Board of Directors for six years where I was able to contribute to the mission of the Foundation.
During the past 6 years, after I moved back to Canada, I have had the honour of supporting Sjögren’s patients in Canada as a member of the Sjögren’s Society of Canada Board of Directors and now as a member of the Membership Benefits and Communications committees. I work with Lauren Vording and a group of committed volunteers to deliver educational and awareness programs and services. I cannot forget the fundraising I did which is an essential part of all non-profit organizations. Walks for Sjögren’s are especially important fundraisers because they also increase awareness and bring patients together.
I once heard a motivational speaker who talked about the “beautiful mosaic” of our lives. The pieces of the mosaic lead us down new pathways and come together in a purposeful and meaningful way. Sjögren’s is one tile in that mosaic; being a volunteer can be another tile. Volunteering uses the skills I already had like organizing and leadership and allowed me to develop new skills like patient support, fundraising, and a focus on health and wellness.
The mosaic of my life, and my Sjögren’s story have been inextricably intertwined.
Advice to my fellow Sjögren’s Patients
- Knowledge is power!! Attend as many conferences, town halls, and support group meetings as you can. Read articles, speak to fellow patients, talk to your doctors. Learn as much as you can about Sjögren’s disease so you can learn about treatment options and take charge of your health especially when a new complication occurs.
- Talk to your friends and family and let them know about your symptoms, how you are feeling and that you may need extra support from time to time. I will not pretend this is easy to do when so few people know about our unknown disease. Sometimes it is easier to say nothing, but it is better to provide information about how Sjögren’s is a real and serious disease and then share how it affects your daily life.
- Learn to focus on health more than ever before! Think of a four-legged stool; each leg represents aspects of healthy living: healthy diet, exercise, stress management, and adequate sleep! Missing one leg may cause our disease to become “wobbly” and potentially cause a flare in our Sjögren’s symptoms.
- For at least one third of my day I want to be restful or doing something I enjoy like reading, watching a movie, or going for a walk in the park.
- Get involved! I encourage everyone to add to your mosaic – give back, volunteer, make a difference! Run a Sjögren’s support group, organize a Walk for Sjögren’s, or join the Board of Directors. It is challenging and time-consuming yet very rewarding work and there is so much more to do!
