Demetra 46 (Diagnosed at 42)
Please finish the following sentence: "Sjögren's has taught me...":
To listen to my body and respect the the limitations
What are your most difficult symptoms?:
Fatigue and joint pain
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
I spent longer than I should have thinking I could manage this disease on my own, which was a horrible decision. It thrust me into a severe flare up in the middle of the pandemic that took me years to recover from. I have spent months at a time in physical therapy and countless doctor’s visits. All of this with a hefty price tag before coming to the realization that I needed help if I was to regain control of my life and to manage the illness rather than the illness managing me.
How do you effectively cope with the complexity of symptoms?:
I take one day at a time, literally and focus on the symptom that bothers me the most on that particular day.
What do you wish people knew about your Sjögren’s?:
I wish people knew that Sjögren’s can affect the entire body and how a person looks on the outside is no indication at all about what they may be feeling on the inside.
How do you incorporate self-care with managing Sjögren's?:
I do this by taking one day during the week and making it my personal day. I use that day to recoup and do whatever makes me happy whether it’s going to the park, reading or sleeping.
What is your go-to Sjögren's product?:
My heating pad.
What’s your best Sjögren’s tip?:
Be your own advocate and respect your body’s limitations. Try to familiarize yourself with inflammatory-prone foods and avoid them as much as possible.
What topic would you like to discuss. Please list one symptom (dry eyes, fatigue, joint pain, etc) or situation (being a student, filing for disability, dating, working etc) to discuss in the next few questions:
Joint pain
What do you wish you knew when first dealing with this symptom/situation?:
I wish I knew how severe the joint pain and fatigue could become and that it shouldn’t be ignored.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Tylenol, Biofeeeze and heat/ice packs
What is your best advice for another patient dealing with this symptom/ situation?:
Keep moving, even if you can only move a little and even when it hurts. Find something that doesn’t hurt and move.
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.:
After months of physical therapy, I've discovered the importance of maintaining mobility despite the challenges of joint pain. Rather than fixating on past abilities, I've shifted my focus to achievable daily goals. Investing in senior-friendly workout equipment has been a game-changer, offering gentle yet effective mobility support on tough days. This balanced approach, coupled with consistency, has significantly improved my overall well-being, allowing me to embrace each day with renewed vitality.
Demetra 46 (Diagnosed at 42)
Please finish the following sentence: "Sjögren's has taught me...":
To listen to my body and respect the the limitations
What are your most difficult symptoms?:
Fatigue and joint pain
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
I spent longer than I should have thinking I could manage this disease on my own, which was a horrible decision. It thrust me into a severe flare up in the middle of the pandemic that took me years to recover from. I have spent months at a time in physical therapy and countless doctor’s visits. All of this with a hefty price tag before coming to the realization that I needed help if I was to regain control of my life and to manage the illness rather than the illness managing me.
How do you effectively cope with the complexity of symptoms?:
I take one day at a time, literally and focus on the symptom that bothers me the most on that particular day.
What do you wish people knew about your Sjögren’s?:
I wish people knew that Sjögren’s can affect the entire body and how a person looks on the outside is no indication at all about what they may be feeling on the inside.
How do you incorporate self-care with managing Sjögren's?:
I do this by taking one day during the week and making it my personal day. I use that day to recoup and do whatever makes me happy whether it’s going to the park, reading or sleeping.
What is your go-to Sjögren's product?:
My heating pad.
What’s your best Sjögren’s tip?:
Be your own advocate and respect your body’s limitations. Try to familiarize yourself with inflammatory-prone foods and avoid them as much as possible.
What topic would you like to discuss. Please list one symptom (dry eyes, fatigue, joint pain, etc) or situation (being a student, filing for disability, dating, working etc) to discuss in the next few questions:
Joint pain
What do you wish you knew when first dealing with this symptom/situation?:
I wish I knew how severe the joint pain and fatigue could become and that it shouldn’t be ignored.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Tylenol, Biofeeeze and heat/ice packs
What is your best advice for another patient dealing with this symptom/ situation?:
Keep moving, even if you can only move a little and even when it hurts. Find something that doesn’t hurt and move.
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.:
After months of physical therapy, I've discovered the importance of maintaining mobility despite the challenges of joint pain. Rather than fixating on past abilities, I've shifted my focus to achievable daily goals. Investing in senior-friendly workout equipment has been a game-changer, offering gentle yet effective mobility support on tough days. This balanced approach, coupled with consistency, has significantly improved my overall well-being, allowing me to embrace each day with renewed vitality.