Bobbie's Autoimmune Story: Challenges with Step Therapy & Work Accommodations
Meet Bobbie
Folia user Bobbie shares her story - how she was diagnosed with and manages Sjögren’s syndrome, psoriatic arthritis, and scleroderma.
Would you tell us about how you arrived at an autoimmune diagnosis?
I’ve had psoriasis and Raynaud’s phenomenon since 2008, but I didn’t know that there was something going on underlying those until February 2020. I felt a lot of pain from my right shoulder. I was told I had a shoulder tear, and I was out of work for two months. Then, I started having odd symptoms that were foreign to me. My hands started turning red and becoming quite painful. I saw my family doctor who thought I might have rheumatoid arthritis. After testing, he found I didn't have RA, but I was positive for ANA which meant that I had an autoimmune disease of some kind. He referred me to a rheumatologist.
In Dec 2020, I saw a rheumatologist who diagnosed me with fibromyalgia right away. He told me that I might also have lupus, and he would continue testing. I have a friend at work whose wife had lupus and had seen the same rheumatologist. He tested her for six months and never diagnosed her. When she started seeing a new rheumatologist, she was diagnosed immediately with lupus. After hearing that, I knew I needed to get a new physician because I needed answers.
It took me a few months to be seen by my new doctor. Without having tested me yet, and just based on my symptoms, she said it sounded like I had Sjögren’s and some form of inflammatory arthritis. She was right on point! As soon as she did the testing, I was diagnosed with Sjögren’s in February 2021. It took me a little over a year to get the first diagnosis. Later I received a psoriatic arthritis diagnosis. I always had thought I was experiencing eczema, and I never knew it was related to the pain I had. Once I started having other autoimmune symptoms, I saw the pictures for psoriatic arthritis and knew that was exactly what was going on with me. I also have scleroderma in my spine. It was diagnosed in September 2021 when I had an MRI.
I’m thanking God that I listened to my gut and went to a new doctor. My dad has rheumatoid arthritis and he referred me to his rheumatologist. It’s kind of strange how he got RA and I got psoriatic arthritis.
How has your treatment journey been since you’ve gotten diagnosed?
The first time I took Plaquenil my eyes turned yellow and I felt very uncomfortable. Then I was put on methotrexate and it made me very sick. I had every side effect. My rheumatologist wanted me to continue on it because biologics are expensive, and insurance wants you to try and fail the more expensive drugs before moving to the pricier ones that might work better for you. My doctor said I could try injecting the methotrexate to see how I tolerated it. Injecting took the side effects away, but my hair started falling out. I didn’t want to keep taking it.
When I received the psoriatic arthritis diagnosis, I was able to start taking Enbrel, which has been extremely effective for me. To be honest, my doctors haven’t told me much that I can do to manage my conditions beyond taking medications. I’ve had to figure it out for myself.
Would you tell us a little bit about those things you’ve figured out to manage your conditions?
My job is very physical and causes me a lot of pain. My care team told me I should get another job so I’m trying to move within the company. But there are also things I do to manage the day-to-day as best I can:
Drink plenty of water
Keep moving
Get help from family and friends
Take my medications and advocate for myself when a medication isn’t working
Use Folia to track the ups and downs of my conditions
Have a doctor that works with me
Be part of online support groups
I try to make the best of things that happen with my health. I was off work with a muscle tear and I was so bored so I started scrolling Instagram. I love beauty and fashion and thought there were some really amazing things to share on the topic. I’m now a beauty influencer with over 10K followers, and I love that outlet.
If you or a loved one is having difficulty managing your work because of a new diagnosis (or an old one), here are some resources to help you learn about work accommodations:
Equal Employment Opportunity Commission
Find your local office:
https://www.eeoc.gov/field-office
Job Accommodation Network
If you have a question about workplace accommodations or the Americans with Disabilities Act (ADA) and related legislation, ask Jan.
(800) 526-7234 (voice)
(877) 781-9403 (TTY)
