How has Sjögren's affected your life (either physically, emotionally, financially)?:
Due to extreme fatigue and chronic pain in my joints I had to quit working. The fatigue and swelling of my joints along with the pain has taken a major toll on me mentally. The routine tests and physical exams are super expensive especially the eye exams for Plaquenil. When I get flare ups my skin gets horrible rashes that itch and burn, makes feel like I'm gonna go crazy!
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I have only met one other person with SjD she has major health problems and is frequently in the hospital. It's nice in a weird way to know someone who understands what this horrible disease is like. Doctors tell us our fatigue, digestive issues, and joint pain aren't due to Sjögren's which is frustrating because it is!
Where/who do you go to for support with Sjögren's?:
I read a lot and talk with my Psychiatrist he's very kind and understanding. I don't have alot of support I'm young and look healthy so a lot people view me as being dramatic or lazy.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren's has taught me to be an advocate for myself, my symptoms were brushed off for years since childhood, but I learned to never give up, this is my body I can't move out of it so I had to not give up. I learned resilience and found my voice. I also learned that this disease is much more than just dry eyes and mouth that's just the tip of the iceberg. The real struggle is swollen gland that hurt on the side of my face, fatigue, and pain.
What do you wish people knew about your Sjögren’s?:
That it's extremely debilitating, it does impact our skin, digestion, joints, and causes fatigue. I'm constantly tired, in pain, and just because I may look young and healthy I'm screaming inside this body that I can not escape! The medicine does not mask all my system.
What advice would you give to someone newly diagnosed?:
To do their homework and start a detailed log about their flare up. Mine are always worse closer to my cycles. To ask for help and to educate others about their condition. Also to find a doctor that is an expert in Sjögren's disease, I'm still searching for one.
What does it mean to "thrive" while living with Sjögren's?:
Thriving means you're making it despite trials, it's hard to fully thrive with disease. I excercise daily and I'm wiped out after, I also homeschool my 2 children, this is a lot for me but I still manage to thrive by taking several laying down breaks.
How do you incorporate self-care with managing Sjögren's?:
Self care is important, I take baths, do face mask, drink hot tea every night, ground outside, and spend time with my cats. This has helped me not lose my mind due to constant pain and fatigue.
What inspires you to keep going on hard days?:
My kids and my husband, I love them so I work hard to take care of myself so I can be more present for them instead of sleeping.
What’s your best Sjögren’s tip?:
Be patient with yourself and don't try and do it all ask for help and it's ok to say no, put yourself first - if you don't have your health you have nothing.
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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)?:
Due to extreme fatigue and chronic pain in my joints I had to quit working. The fatigue and swelling of my joints along with the pain has taken a major toll on me mentally. The routine tests and physical exams are super expensive especially the eye exams for Plaquenil. When I get flare ups my skin gets horrible rashes that itch and burn, makes feel like I'm gonna go crazy!
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I have only met one other person with SjD she has major health problems and is frequently in the hospital. It's nice in a weird way to know someone who understands what this horrible disease is like. Doctors tell us our fatigue, digestive issues, and joint pain aren't due to Sjögren's which is frustrating because it is!
Where/who do you go to for support with Sjögren's?:
I read a lot and talk with my Psychiatrist he's very kind and understanding. I don't have alot of support I'm young and look healthy so a lot people view me as being dramatic or lazy.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren's has taught me to be an advocate for myself, my symptoms were brushed off for years since childhood, but I learned to never give up, this is my body I can't move out of it so I had to not give up. I learned resilience and found my voice. I also learned that this disease is much more than just dry eyes and mouth that's just the tip of the iceberg. The real struggle is swollen gland that hurt on the side of my face, fatigue, and pain.
What do you wish people knew about your Sjögren’s?:
That it's extremely debilitating, it does impact our skin, digestion, joints, and causes fatigue. I'm constantly tired, in pain, and just because I may look young and healthy I'm screaming inside this body that I can not escape! The medicine does not mask all my system.
What advice would you give to someone newly diagnosed?:
To do their homework and start a detailed log about their flare up. Mine are always worse closer to my cycles. To ask for help and to educate others about their condition. Also to find a doctor that is an expert in Sjögren's disease, I'm still searching for one.
What does it mean to "thrive" while living with Sjögren's?:
Thriving means you're making it despite trials, it's hard to fully thrive with disease. I excercise daily and I'm wiped out after, I also homeschool my 2 children, this is a lot for me but I still manage to thrive by taking several laying down breaks.
How do you incorporate self-care with managing Sjögren's?:
Self care is important, I take baths, do face mask, drink hot tea every night, ground outside, and spend time with my cats. This has helped me not lose my mind due to constant pain and fatigue.
What inspires you to keep going on hard days?:
My kids and my husband, I love them so I work hard to take care of myself so I can be more present for them instead of sleeping.
What’s your best Sjögren’s tip?:
Be patient with yourself and don't try and do it all ask for help and it's ok to say no, put yourself first - if you don't have your health you have nothing.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month