Meg
Patient-to-patient topic:
Symptoms and uncertainty of the future
What do you wish you knew when first dealing with this symptom/situation?:
Be your own advocate and an active participant in your own care.
What are the top 3 over-the-count products or tools you use when dealing with this symptom/situation?:
Cyclosporine eye drops, Plaquenil, getting enough sleep.
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.:
It’s scary sometimes to think about the future and the possible complications of the disease long term. Antibody-positive Sjögren's can cause so many issues, including lung issues and lymphoma, and affect pregnancy outcomes, to name a few. The best thing has been taking the time to accept the diagnosis and then getting a treatment plan together with the specialists needed. After being resistant at first to medication, I’m glad I came around to it. My eyes are better, fatigue improved, labs look better, and muscle and joint pain controlled. For others dealing with Sjögren's, find a good rheumatologist along with medication that works for you. Lifestyle management, practicing gratitude, and having a good support network are just as important as the medications. I wish I didn't have Sjögren's and the future can be scary to think about, but it is manageable right now. So I keep going and choose to focus on the good.
Please finish the following sentence: "Sjögren's has taught me...":
To start prioritizing myself and take better care of my health.
What are your most difficult symptoms?:
Vision issues, fatigue, esophagitis, joint and muscle pain.
How do you incorporate self-care with managing Sjögren's?:
Getting good sleep and listening to my body so I don’t overdo it.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
It has affected my family planning of becoming a mom, which has been hard. And the uncertainty of the future can be scary.
What is your go-to Sjögren's product?:
Cyclosporine eye drops and Plaquenil have improved my life.
What’s your best Sjögren’s tip?:
Keep moving and focus on the good.
Meg
Patient-to-patient topic:
Symptoms and uncertainty of the future
What do you wish you knew when first dealing with this symptom/situation?:
Be your own advocate and an active participant in your own care.
What are the top 3 over-the-count products or tools you use when dealing with this symptom/situation?:
Cyclosporine eye drops, Plaquenil, getting enough sleep.
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.:
It’s scary sometimes to think about the future and the possible complications of the disease long term. Antibody-positive Sjögren's can cause so many issues, including lung issues and lymphoma, and affect pregnancy outcomes, to name a few. The best thing has been taking the time to accept the diagnosis and then getting a treatment plan together with the specialists needed. After being resistant at first to medication, I’m glad I came around to it. My eyes are better, fatigue improved, labs look better, and muscle and joint pain controlled. For others dealing with Sjögren's, find a good rheumatologist along with medication that works for you. Lifestyle management, practicing gratitude, and having a good support network are just as important as the medications. I wish I didn't have Sjögren's and the future can be scary to think about, but it is manageable right now. So I keep going and choose to focus on the good.
Please finish the following sentence: "Sjögren's has taught me...":
To start prioritizing myself and take better care of my health.
What are your most difficult symptoms?:
Vision issues, fatigue, esophagitis, joint and muscle pain.
How do you incorporate self-care with managing Sjögren's?:
Getting good sleep and listening to my body so I don’t overdo it.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
It has affected my family planning of becoming a mom, which has been hard. And the uncertainty of the future can be scary.
What is your go-to Sjögren's product?:
Cyclosporine eye drops and Plaquenil have improved my life.
What’s your best Sjögren’s tip?:
Keep moving and focus on the good.