How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögren’s has affected me in every way possible; mentally, physically, emotionally and financially. When I was first diagnosed in 2020, I had just begun noticing a severe decline in my physical abilities. I think a car accident in 2017 was the trigger. I had back pain that seemed uncurable even though the doctors couldn't figure out why. I was always exhausted and something somewhere on my body hurt daily. The treatments in the beginning showed more side effects than help. I also got Shingles in 2020 at age 30. The fact that I don't have control over my daily functionality has been tough to deal with. I'm also a single parent with responsibilities that don't like to wait for me to "feel better". It had been good to have a diagnosis but nothing could prepare me for this. I'm not giving up and I want to keep going through it all.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
The Sjögren's community is my support system and so informational! Most of my family doesn't truly understand. So I love that this community makes me feel seen and heard.
Where/who do you go to for support with Sjögren's?:
My Facebook Sjögren's group, my best friend, my daughter, my daughter's father, my therapist and my Rheumatologist. They are always understanding and willing to hear me.
Please finish the following sentence: "Sjögren's has taught me...":
To listen to my body! Your body knows what's going on and ignoring it doesn't bring good outcomes. So always advocate for yourself and do your research.
What do you wish people knew about your Sjögren’s?:
That is so much bigger than dry mouth. It can affect every part of your body. It can create more issues long term that aren't always understood by all.
What advice would you give to someone newly diagnosed?:
Do your research and advocate for yourself. You're not alone and your not crazy!
What does it mean to "thrive" while living with Sjögren's?:
To enjoy life and reach goals despite the daily physical and mental struggles. It is possible! Find what works for you by researching and trying things out.
How do you incorporate self-care with managing Sjögren's?:
Self care is my daily goal because if I'm not OK then no one else is. I get regular massages to help alleviate fibromyalgia pain and reduce stress. I try to enjoy everyday life and eat healthier. I set goals, go to therapy, do crafts and journal to remove the clutter from my mind. It's possible to manage Sjögren's but you have to stay diligent and listen to your body.
What inspires you to keep going on hard days?:
My 16 year old daughter, she still needs me and I want to be here to see all the good stuff! I lost my mother to cancer when I was 11 years old. I don't want to allow myself to be taken away too soon because I didn't try everything.
What’s your best Sjögren’s tip?:
Try new things to help manage your symptoms. I found that massages are the best medicine for me. I have been on a journey to find triggers in my diet and how to sleep better. Do your research and don't give up.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
Topic: Brain Fog
What do you wish you knew when first dealing with this symptom/situation?:
How deeply this would affect my abilities.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Tumeric and ginger tea, electric body massagers, and Liquid IV.
What is your best advice for another patient dealing with this symptom/ situation?:
Keep notes for yourself and do research. I've gotten forgetful and my short term memory is not as good as it used to be.
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'm currently an MBA Student and it's difficult to remember information for exams. I work with the school disability department and my teachers to help me. I also advocate for myself with everyone to get the care I need and to find new options to help alleviate the issues.
Click Here to Read More Patient-to-Patient Stories
How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögren’s has affected me in every way possible; mentally, physically, emotionally and financially. When I was first diagnosed in 2020, I had just begun noticing a severe decline in my physical abilities. I think a car accident in 2017 was the trigger. I had back pain that seemed uncurable even though the doctors couldn't figure out why. I was always exhausted and something somewhere on my body hurt daily. The treatments in the beginning showed more side effects than help. I also got Shingles in 2020 at age 30. The fact that I don't have control over my daily functionality has been tough to deal with. I'm also a single parent with responsibilities that don't like to wait for me to "feel better". It had been good to have a diagnosis but nothing could prepare me for this. I'm not giving up and I want to keep going through it all.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
The Sjögren's community is my support system and so informational! Most of my family doesn't truly understand. So I love that this community makes me feel seen and heard.
Where/who do you go to for support with Sjögren's?:
My Facebook Sjögren's group, my best friend, my daughter, my daughter's father, my therapist and my Rheumatologist. They are always understanding and willing to hear me.
Please finish the following sentence: "Sjögren's has taught me...":
To listen to my body! Your body knows what's going on and ignoring it doesn't bring good outcomes. So always advocate for yourself and do your research.
What do you wish people knew about your Sjögren’s?:
That is so much bigger than dry mouth. It can affect every part of your body. It can create more issues long term that aren't always understood by all.
What advice would you give to someone newly diagnosed?:
Do your research and advocate for yourself. You're not alone and your not crazy!
What does it mean to "thrive" while living with Sjögren's?:
To enjoy life and reach goals despite the daily physical and mental struggles. It is possible! Find what works for you by researching and trying things out.
How do you incorporate self-care with managing Sjögren's?:
Self care is my daily goal because if I'm not OK then no one else is. I get regular massages to help alleviate fibromyalgia pain and reduce stress. I try to enjoy everyday life and eat healthier. I set goals, go to therapy, do crafts and journal to remove the clutter from my mind. It's possible to manage Sjögren's but you have to stay diligent and listen to your body.
What inspires you to keep going on hard days?:
My 16 year old daughter, she still needs me and I want to be here to see all the good stuff! I lost my mother to cancer when I was 11 years old. I don't want to allow myself to be taken away too soon because I didn't try everything.
What’s your best Sjögren’s tip?:
Try new things to help manage your symptoms. I found that massages are the best medicine for me. I have been on a journey to find triggers in my diet and how to sleep better. Do your research and don't give up.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
Topic: Brain Fog
What do you wish you knew when first dealing with this symptom/situation?:
How deeply this would affect my abilities.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Tumeric and ginger tea, electric body massagers, and Liquid IV.
What is your best advice for another patient dealing with this symptom/ situation?:
Keep notes for yourself and do research. I've gotten forgetful and my short term memory is not as good as it used to be.
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'm currently an MBA Student and it's difficult to remember information for exams. I work with the school disability department and my teachers to help me. I also advocate for myself with everyone to get the care I need and to find new options to help alleviate the issues.
Click Here to Read More Patient-to-Patient Stories