How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögren's has affected my life in many ways, but mostly physically and to some extent, financially and emotionally. Physically; I am always in pain, but movement helps. My eyes are my worst symptoms, followed by disc deterioration and arthritis in my hands, and neuropathy. My prescriptions are mostly covered by insurance, but even with that, I still have substantial out-of-pocket expenses. Emotionally, I get a bit depressed because I hate how my family worries about me.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Connecting with the Sjögren's Foundation has given me a world of information about how others deal with this disease, and just knowing how others are affected, helps me.
Where/who do you go to for support with Sjögren's?:
I have my husband and daughter, and other family members and friends, who help me emotionally, and I go to the Sjögren's website.
Please finish the following sentence: "Sjögren's has taught me...":
to ask for help more often, and to try not to let things get to me.
What do you wish people knew about your Sjögren’s?:
I wish other people, outside of my family, would understand that I have to take a lot of time to take care of my eyes. I spend about 90 minutes a day with eye care alone.
What advice would you give to someone newly diagnosed?:
Learn all you can, but celebrate your strengths! Look for support from your family and friends, and the Sjoögren's Foundation.
What does it mean to "thrive" while living with Sjögren's?:
Not to let it get to you, and still being able to do the things you want, just listen to your body.
How do you incorporate self-care with managing Sjögren's?:
I have a routine that I follow every day, beginning when I wake up, and do my eye drops and Bruder mask. I walk on a manual treadmill for 40 minutes day and this, along with stretching and light weights helps easy the musculoskeletal pain. I have to move a lot, and plan my day around my eye care.
What inspires you to keep going on hard days?:
My family and friends.
What’s your best Sjögren’s tip?:
My best tip is to listen to your body, keep moving and celebrate the good things every day.
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Click Here to Learn More About Sjögren's Awareness Month
How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögren's has affected my life in many ways, but mostly physically and to some extent, financially and emotionally. Physically; I am always in pain, but movement helps. My eyes are my worst symptoms, followed by disc deterioration and arthritis in my hands, and neuropathy. My prescriptions are mostly covered by insurance, but even with that, I still have substantial out-of-pocket expenses. Emotionally, I get a bit depressed because I hate how my family worries about me.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Connecting with the Sjögren's Foundation has given me a world of information about how others deal with this disease, and just knowing how others are affected, helps me.
Where/who do you go to for support with Sjögren's?:
I have my husband and daughter, and other family members and friends, who help me emotionally, and I go to the Sjögren's website.
Please finish the following sentence: "Sjögren's has taught me...":
to ask for help more often, and to try not to let things get to me.
What do you wish people knew about your Sjögren’s?:
I wish other people, outside of my family, would understand that I have to take a lot of time to take care of my eyes. I spend about 90 minutes a day with eye care alone.
What advice would you give to someone newly diagnosed?:
Learn all you can, but celebrate your strengths! Look for support from your family and friends, and the Sjoögren's Foundation.
What does it mean to "thrive" while living with Sjögren's?:
Not to let it get to you, and still being able to do the things you want, just listen to your body.
How do you incorporate self-care with managing Sjögren's?:
I have a routine that I follow every day, beginning when I wake up, and do my eye drops and Bruder mask. I walk on a manual treadmill for 40 minutes day and this, along with stretching and light weights helps easy the musculoskeletal pain. I have to move a lot, and plan my day around my eye care.
What inspires you to keep going on hard days?:
My family and friends.
What’s your best Sjögren’s tip?:
My best tip is to listen to your body, keep moving and celebrate the good things every day.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month