I know months have passed since my last post. As a working mom with a toddler who is more often at home than preschool, this year has been especially challenging for our family. I wanted to let you know that I’m still here and I’m still fighting for the autoimmune community and Sjogren’s during this pandemic.
I’m participating in our Sjogren’s 5k walk and asking everyone to please donate to the cause. These are hard times, but the change you can spare will improve the lives of others like me. Sjogren’s is receiving more visibility and research, especially as new manifestations are discussed in medicine.
If COVID-19 has exposed anything for the autoimmune and Sjogren’s community, it’s that we need better options than Plaquenil or Hydroxychloroquine. Research shows it may not be as helpful for primary Sjogren’s and risks can outweigh the benefits. As more patients share their stories, we gain more traction. I think this article in the New Yorker adequately explains to outsiders what it’s like to live with these diseases.
What I’ve learned from being a part of the autoimmune and chronic illness community
It’s been 6 months since I was put on medication to help manage my kidney stones and 9 months since I changed my diet completely. Since my last renal panel and scans, it looks like both are working for me. My labs have never looked better to my nephrologist.
That said… if I have learned anything on this journey with Sjogren’s and from my support group, it’s that there isn’t a one-size-fits-all approach. The disease doesn’t affect everyone the same, so treatment isn’t going to be the same. Not even the autoimmune paleo or AIP diet works for every Sjogren’s patient. Exercises do help, but it won’t stop the fatigue completely.
You have to find what works for you. Don’t feel guilty about giving up something you’ve tried that others swear by or exploring an alternate path.
There are some days I still feel so incredibly alone, as my rheumatologist likes to remind me that my renal condition with Sjogren’s is rare. While I’ve grown tired of trying to explain to my family and friends why I feel the way I do, I take comfort in my local support group that I found through the Sjogren’s Foundation.
I continue to learn so much from talking to other Sjogren’s patients, including those who are suffering from chronic kidney disease and other underdiagnosed complications. It gives me hope that, together, we can change both the narrative and outcome of this disease.