How has Sjögren's affected your life (either physically, emotionally, financially)?:
I can no longer work due to neuropathy pain, brain fog, memory issues, and mobility issues, all from Sjögren’s disease. My quality of life has gone down. But I’m doing everything I can to become independent; it’s just not in the cards right now.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
It’s been so reassuring. People have gone through this before and have found ways to live normal lives. I’ll eventually find something that works to live a relatively normal life.
Where/who do you go to for support with Sjögren's?:
My family has been a great support team. I also have a great team of doctors and nurses that I see regularly. With that combo, I know I’ll eventually find a combination of medicine, therapy, and lifestyle changes to gain independence again.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren’s had taught me how ableist I didn’t realize I was. I used to think life wouldn’t be worth living if I didn’t have my intelligence and have full control of my faculties. Turns out life is still amazing even with short term memory problems, brain fog, and episodes of confusion. I was completely wrong.
What do you wish people knew about your Sjögren’s?:
That dry mouth and dry eyes are distinguishing features, not sole features. It’s still a systemic autoimmune disease that has a long list of symptoms. I have had to educate some doctors I’ve seen, including showing them the Sjögren’s Foundation to provide them with info.
What advice would you give to someone newly diagnosed?:
Tell your doctor about all your symptoms, even non-physical ones. I’ve had significant mental problems because of Sjögren's: brain fog, short term memory issues, bouts of confusion. It’s scary, and it shouldn’t be kept from your doctors.
What does it mean to "thrive" while living with Sjögren's?:
I’m still on my journey to finding out what that is. Right now I’m in survival mode.
How do you incorporate self-care with managing Sjögren's?:
By framing everything that helps my health as self care. Showering? Self care. Brushing my teeth? Self care. Eating a healthy dinner? Self care. Doctors visits? Self care. Listening to silly pop songs? Self care. Playing a memory game? Self care. Putting my meds in a weekly pill organizer? Self care. Making sarcastic remarks while watching a silly reality show? Self care.
What inspires you to keep going on hard days?:
My family. Knowing that they love me and how lucky I am to have them. My infant niece is one of my favorite people on this planet. I get to see her a lot, so I know I have to get through anything and everything to see her grow up.
What’s your best Sjögren’s tip?:
Find out what works for you mentally to keep going. Maybe how much you love your friends and family. Maybe it’s throwing your emotions into art, writing, or physical activity. Maybe it’s being spiteful towards Sjögren’s, like 'screw you Sjögren’s my eye drops, probiotics, plaquenil, and physical therapy will defeat you'. Or, 'Haha Sjögren’s, I’m still gonna be alive in the next hour, next 15 minutes, next 30 seconds'. Whatever you need to do to get through the pain.
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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)?:
I can no longer work due to neuropathy pain, brain fog, memory issues, and mobility issues, all from Sjögren’s disease. My quality of life has gone down. But I’m doing everything I can to become independent; it’s just not in the cards right now.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
It’s been so reassuring. People have gone through this before and have found ways to live normal lives. I’ll eventually find something that works to live a relatively normal life.
Where/who do you go to for support with Sjögren's?:
My family has been a great support team. I also have a great team of doctors and nurses that I see regularly. With that combo, I know I’ll eventually find a combination of medicine, therapy, and lifestyle changes to gain independence again.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren’s had taught me how ableist I didn’t realize I was. I used to think life wouldn’t be worth living if I didn’t have my intelligence and have full control of my faculties. Turns out life is still amazing even with short term memory problems, brain fog, and episodes of confusion. I was completely wrong.
What do you wish people knew about your Sjögren’s?:
That dry mouth and dry eyes are distinguishing features, not sole features. It’s still a systemic autoimmune disease that has a long list of symptoms. I have had to educate some doctors I’ve seen, including showing them the Sjögren’s Foundation to provide them with info.
What advice would you give to someone newly diagnosed?:
Tell your doctor about all your symptoms, even non-physical ones. I’ve had significant mental problems because of Sjögren's: brain fog, short term memory issues, bouts of confusion. It’s scary, and it shouldn’t be kept from your doctors.
What does it mean to "thrive" while living with Sjögren's?:
I’m still on my journey to finding out what that is. Right now I’m in survival mode.
How do you incorporate self-care with managing Sjögren's?:
By framing everything that helps my health as self care. Showering? Self care. Brushing my teeth? Self care. Eating a healthy dinner? Self care. Doctors visits? Self care. Listening to silly pop songs? Self care. Playing a memory game? Self care. Putting my meds in a weekly pill organizer? Self care. Making sarcastic remarks while watching a silly reality show? Self care.
What inspires you to keep going on hard days?:
My family. Knowing that they love me and how lucky I am to have them. My infant niece is one of my favorite people on this planet. I get to see her a lot, so I know I have to get through anything and everything to see her grow up.
What’s your best Sjögren’s tip?:
Find out what works for you mentally to keep going. Maybe how much you love your friends and family. Maybe it’s throwing your emotions into art, writing, or physical activity. Maybe it’s being spiteful towards Sjögren’s, like 'screw you Sjögren’s my eye drops, probiotics, plaquenil, and physical therapy will defeat you'. Or, 'Haha Sjögren’s, I’m still gonna be alive in the next hour, next 15 minutes, next 30 seconds'. Whatever you need to do to get through the pain.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month