"Since I was diagnosed with Sjögren’s, I have learned..."
Since I was diagnosed with Sjögren’s, I have learned that I am tougher then I thought I was and it’s ok to not get out of bed if you don’t feel up to it.
What are my most difficult symptoms? Peripheral neuropathy of my feet and CNS involvement which has caused me to lose the ability to swallow.
How has Sjögren's affected my life and how you’ve been able to effectively cope with the complexity of symptoms? Between the Sjogrens & Lupus, I am presently unable to work. I choke often while eating. I have learned to always have a beverage while I’m eating incase food gets stuck. I only swallow due to gravity now.
What do I wish people knew about your Sjögren’s? Just because you can’t see my pain and exhaustion, doesn’t make me lazy. I put my best face forward always as I never want someone to look down on me. I know I shouldn’t care, but I do.
Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren's? I have had trouble and have been unable to refill my prescription for hydroxychloroquine. It’s very frustrating. I am medically quarantined per doctors orders. I have been hospitalized 7 times for pneumonia illnesses in the past, including 1 time in the ICU. I am afraid for my safety if I were to contract Covid-19.
What’s my best Sjögren’s tip? Follow your instincts. Be your own advocate. Get a 2nd opinion. And most importantly, surround yourself with a squad that understands and supports you 100%, 100% of the time!