Penny 71 (Diagnosed at 43)
Please finish the following sentence: "Sjögren's has taught me...":
To remain flexible and remember every day will be different, and I can do whatever I want to do at a pace my health will tolerate.
What are your most difficult symptoms?:
I've been very lucky for many years to be able to do more than some patients, but the fatigue and joint pain have increased substantially during the past year to the point where it interferes with mobility and independent activities at times.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
The unpredictable symptoms make planning and commitments difficult to impossible which affects friendships, activities, and anything that requires consistency.
How do you effectively cope with the complexity of symptoms?:
Since I've dealt with Sjögren's and two other autoimmune diseases for twenty-eight years, I developed a philosophy early on that essentially is acceptance that things will change and when they do, I make a new plan and keep moving.
What do you wish people knew about your Sjögren’s?:
It was far less known and understood when I was diagnosed, and no one understood how much it affected me. I hid a lot of the effects and did more than I should have too often.
How do you incorporate self-care with managing Sjögren's?:
I find activities that suit the need to rest but not sleep, like learning a simple new skill online, or exercise moderately, like gardening in pots, or even practicing meditation or listening to audiobooks when I need total rest, so that I don't focus on being frustrated over the limitations.
What is your go-to Sjögren's product?:
Biotene oral products and Marin lotion for skin dryness.
What’s your best Sjögren’s tip?:
Do what works for you and don't compare yourself to others. What works for each person may be different even for the same symptoms.
Penny 71 (Diagnosed at 43)
Please finish the following sentence: "Sjögren's has taught me...":
To remain flexible and remember every day will be different, and I can do whatever I want to do at a pace my health will tolerate.
What are your most difficult symptoms?:
I've been very lucky for many years to be able to do more than some patients, but the fatigue and joint pain have increased substantially during the past year to the point where it interferes with mobility and independent activities at times.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
The unpredictable symptoms make planning and commitments difficult to impossible which affects friendships, activities, and anything that requires consistency.
How do you effectively cope with the complexity of symptoms?:
Since I've dealt with Sjögren's and two other autoimmune diseases for twenty-eight years, I developed a philosophy early on that essentially is acceptance that things will change and when they do, I make a new plan and keep moving.
What do you wish people knew about your Sjögren’s?:
It was far less known and understood when I was diagnosed, and no one understood how much it affected me. I hid a lot of the effects and did more than I should have too often.
How do you incorporate self-care with managing Sjögren's?:
I find activities that suit the need to rest but not sleep, like learning a simple new skill online, or exercise moderately, like gardening in pots, or even practicing meditation or listening to audiobooks when I need total rest, so that I don't focus on being frustrated over the limitations.
What is your go-to Sjögren's product?:
Biotene oral products and Marin lotion for skin dryness.
What’s your best Sjögren’s tip?:
Do what works for you and don't compare yourself to others. What works for each person may be different even for the same symptoms.