How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögren's has been a very effective Hoover vacuum sucking most of my primary resources in my life. As with many Sjögren's patients, a diagnosis took some time, my being a man, just compounded the puzzle. Once recovered, I was not able to return to my position as a flight attendant as no doctor could guarantee I would remain stable working at 30,000 ft. Through support of my friends and family I made it through the devastation to my entire life. I try to keep up with all the latest information and advice regarding our disease and have educated many, including some doctors.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I have been in the Sjögren's Foundation since I was diagnosed. I attend meetings with the NH Seacoast group on occasion, I am a member of the FaceBook Sjögren's group, I attended the National Conference before Covid, I am a member of the Men's Sjögren's group. I have gained so much information from all these great groups
Where/who do you go to for support with Sjögren's?:
My Primary and I have a great communication and she is the center for my team of Drs, everything funnels through her and keeps my profile updated.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren's has taught me patience, to look at life's gifts from the positive, research and be as prepared as possible for the prognosis.
What do you wish people knew about your Sjögren’s?:
I wish people knew how debilitating this disease can be and understand if occasional fatigue, mouth sores or other symptoms interferes with daily life/plans. "Funny, you don't look sick".
What advice would you give to someone newly diagnosed?:
Research and find out all you can about your particular case. There are a lot of similarities within the Sjögren's community while just as many differences. Stay positive and don't obsess.
What does it mean to "thrive" while living with Sjögren's?:
Do not take the diagnosis as an excuse to bow out of life. Stay on track and keep getting on with plans and dreams.
How do you incorporate self-care with managing Sjögren's?:
I have always taken care of my body and that's more important than ever with Sjögren's with regular exercise. Cook books available and recipes from other Sjögren's friends. Stay situationally aware of what your abilities include with activities or work. Know your body and what affects cause symptoms. I keep a journal, very helpful.
What inspires you to keep going on hard days?:
My inspirations stem from love of family, I have 3 kids and 6 grandkids. I try to avoid most everyone on hard days, difficult being civil much less pleasant when it's a flare up. My family carries me through just by being so important for me to look forward.
What’s your best Sjögren’s tip?:
Stay as active as possible and become knowledgeable about Sjögren's updates.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
Topic: Dry Eye
What do you wish you knew when first dealing with this symptom/situation?:
Go to Dry Eye Specialist first thing, avoid progression, be consistent with warm packs.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Eye lid cleansing pads, Eye Drops (no preservatives), warm packs 5-10 minutes daily, Aleeve (or whatever pain reliever works for you).
What is your best advice for another patient dealing with this symptom/ situation?:
Be sure to visit Opthalmologist and Dry Eye Specialist routinely. Use warm packs regularly and be sure to be consistent with eye drops. Be sure to notify Ophthalmologist if you are on Hydroxychloroquine as this may effect your eyes after years of use. Keep calm and carry on, keep on top of your symptoms and what helps relieve.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.:
I have been diagnosed with Sjögren's since 2018 after hospitalization for Pulmonary Emboli and double pneumonia. I was diagnosed with Sjögren's largely due to the clues of dry eye and mouth. Dry eye is very problematic and learn to always have eye drops with you. It really helps to use hot packs consistently helps break up oils. I have continued to build stamina through keeping fit. I believe that keeping active is best for most all symptoms to help repair damage and delay progression of symptoms.
Click Here to Read More Patient-to-Patient Stories
How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögren's has been a very effective Hoover vacuum sucking most of my primary resources in my life. As with many Sjögren's patients, a diagnosis took some time, my being a man, just compounded the puzzle. Once recovered, I was not able to return to my position as a flight attendant as no doctor could guarantee I would remain stable working at 30,000 ft. Through support of my friends and family I made it through the devastation to my entire life. I try to keep up with all the latest information and advice regarding our disease and have educated many, including some doctors.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I have been in the Sjögren's Foundation since I was diagnosed. I attend meetings with the NH Seacoast group on occasion, I am a member of the FaceBook Sjögren's group, I attended the National Conference before Covid, I am a member of the Men's Sjögren's group. I have gained so much information from all these great groups
Where/who do you go to for support with Sjögren's?:
My Primary and I have a great communication and she is the center for my team of Drs, everything funnels through her and keeps my profile updated.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren's has taught me patience, to look at life's gifts from the positive, research and be as prepared as possible for the prognosis.
What do you wish people knew about your Sjögren’s?:
I wish people knew how debilitating this disease can be and understand if occasional fatigue, mouth sores or other symptoms interferes with daily life/plans. "Funny, you don't look sick".
What advice would you give to someone newly diagnosed?:
Research and find out all you can about your particular case. There are a lot of similarities within the Sjögren's community while just as many differences. Stay positive and don't obsess.
What does it mean to "thrive" while living with Sjögren's?:
Do not take the diagnosis as an excuse to bow out of life. Stay on track and keep getting on with plans and dreams.
How do you incorporate self-care with managing Sjögren's?:
I have always taken care of my body and that's more important than ever with Sjögren's with regular exercise. Cook books available and recipes from other Sjögren's friends. Stay situationally aware of what your abilities include with activities or work. Know your body and what affects cause symptoms. I keep a journal, very helpful.
What inspires you to keep going on hard days?:
My inspirations stem from love of family, I have 3 kids and 6 grandkids. I try to avoid most everyone on hard days, difficult being civil much less pleasant when it's a flare up. My family carries me through just by being so important for me to look forward.
What’s your best Sjögren’s tip?:
Stay as active as possible and become knowledgeable about Sjögren's updates.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
Topic: Dry Eye
What do you wish you knew when first dealing with this symptom/situation?:
Go to Dry Eye Specialist first thing, avoid progression, be consistent with warm packs.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Eye lid cleansing pads, Eye Drops (no preservatives), warm packs 5-10 minutes daily, Aleeve (or whatever pain reliever works for you).
What is your best advice for another patient dealing with this symptom/ situation?:
Be sure to visit Opthalmologist and Dry Eye Specialist routinely. Use warm packs regularly and be sure to be consistent with eye drops. Be sure to notify Ophthalmologist if you are on Hydroxychloroquine as this may effect your eyes after years of use. Keep calm and carry on, keep on top of your symptoms and what helps relieve.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.:
I have been diagnosed with Sjögren's since 2018 after hospitalization for Pulmonary Emboli and double pneumonia. I was diagnosed with Sjögren's largely due to the clues of dry eye and mouth. Dry eye is very problematic and learn to always have eye drops with you. It really helps to use hot packs consistently helps break up oils. I have continued to build stamina through keeping fit. I believe that keeping active is best for most all symptoms to help repair damage and delay progression of symptoms.
Click Here to Read More Patient-to-Patient Stories