How has Sjögren's affected your life (either physically, emotionally, financially)?:
I will say this, through counseling, I learned that I am morning my former life and trying to navigate my new life with Sjögren’s.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Knowing that others are experiencing the same issues I am, helps me to not feel so isolated. I know that I am not alone in this journey. I haven’t been as anxious about my symptoms, nor what my further looks like with Sjögren’s.
Where/who do you go to for support with Sjögren's?:
Thankfully my spouse is an Optometrist. I didn’t even know what Sjögren’s was. When I was diagnosed it was the first time I heard of it. My husband knew all about it. He is very supportive and has treated Sjögren eye related issues for years. He also knows the struggles patients endure trying to get the right diagnosis. He has actually related to me that on a particular day that he had a patient that sounded exactly like me, trying to navigate all of the symptoms and just find the right combination of therapies to get relief and try to lead as best of a normal life as possible.
Please finish the following sentence: "Sjögren's has taught me...":
That I have limitations, that many of the health issues I was/am experiencing are related to the disease.
What do you wish people knew about your Sjögren’s?:
That what I am experiencing is real. I am not a hypochondriac. That it is ok to talk about how Sjögren’s is affecting my life. Talking about Sjögren’s is the same as someone talking about their job, their family or their vacation. That it is what is going on with me, so I’ll talk about it.
What advice would you give to someone newly diagnosed?:
Take a breath … this disease is chronic. It is manageable. Listen to your body, you now have limitations. Over doing or over stressing will lead to symptom onset. Educate those that are closest to you. Print the human body diagram that the Sjögren’s Foundation has on their site. Give it to everyone that you think needs education about the disease. It is a systemic disease, that seems to have a mind of its own. You never know when it will affect a body's systems. Seek a good Rheumatologist, one versed in Sjögren’s. Understand your PCP is most likely limited in their knowledge of the disease. You may be tasked with educating them as well. I learned, in case this disease has debilitated you, that it is recognized by Social Security as a disability. Lastly, you are not in this alone, seek support, whether it be counseling, support groups, education is also key. You are not a hypochondriac your symptoms are real!
What does it mean to "thrive" while living with Sjögren's?:
To me, thriving while living with Sjögren’s is a loaded question. It has been a 5 year journey to finally feel that my disease is under control rather than it controlling me. My Rheumatologist continued to tell me that we are in this together, that we are a team. Through trying different drug therapies and the tolerance of those, it has been trying at times. I have a wonderful PCP with three physicians, my own Optometrist (my Husband), brilliant Rheumatologist, an alright dentist, plus I sought car from on of the top Sjögren’s doc’s at Mayo. This Rheumatologist and the one I’ve been a patients for five years have a bit of a different philosophy. I use both of their therapies to help me manage my symptoms. I will say, I have been doing very well as of late.
How do you incorporate self-care with managing Sjögren's?:
Diet, trying my best to eliminate stress from my life and embrace peaceful mindfulness.
What inspires you to keep going on hard days?:
Keeping going on hard days. Working through it can be a challenge. I don’t make many plans. Why? Well it is disappointing to the folks you were planning with and mostly to yourself. I am trying to get better at this. On hard days it’s important to not push it. My anxiety of having a flare up has inhibited my social life. Again, I am trying to get better at this. How am I trying, well that has come from my time living with Sjögren’s, I’ve learned it is ok to say no, it is ok, to take a break for a while even if it isn’t convenient for everyone in the group, it is ok to say, I DO NOT FEEL WELL ENOUGH TO DO THIS or THAT! I’ve learned that it is ok to be the one that sits on the sidelines, I don’t have to be the one that does everything for my family. If I sit back it doesn’t mean I am lazy or that I don’t care what festivities are occurring around me. I can still enjoy the event as an onlooker. This is me navigating my new life living with Sjögren’s.
What’s your best Sjögren’s tip?:
Don’t consume sugar! Don’t stress! Be in tune with your body, don’t overdo.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
How has Sjögren's affected your life (either physically, emotionally, financially)?:
I will say this, through counseling, I learned that I am morning my former life and trying to navigate my new life with Sjögren’s.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Knowing that others are experiencing the same issues I am, helps me to not feel so isolated. I know that I am not alone in this journey. I haven’t been as anxious about my symptoms, nor what my further looks like with Sjögren’s.
Where/who do you go to for support with Sjögren's?:
Thankfully my spouse is an Optometrist. I didn’t even know what Sjögren’s was. When I was diagnosed it was the first time I heard of it. My husband knew all about it. He is very supportive and has treated Sjögren eye related issues for years. He also knows the struggles patients endure trying to get the right diagnosis. He has actually related to me that on a particular day that he had a patient that sounded exactly like me, trying to navigate all of the symptoms and just find the right combination of therapies to get relief and try to lead as best of a normal life as possible.
Please finish the following sentence: "Sjögren's has taught me...":
That I have limitations, that many of the health issues I was/am experiencing are related to the disease.
What do you wish people knew about your Sjögren’s?:
That what I am experiencing is real. I am not a hypochondriac. That it is ok to talk about how Sjögren’s is affecting my life. Talking about Sjögren’s is the same as someone talking about their job, their family or their vacation. That it is what is going on with me, so I’ll talk about it.
What advice would you give to someone newly diagnosed?:
Take a breath … this disease is chronic. It is manageable. Listen to your body, you now have limitations. Over doing or over stressing will lead to symptom onset. Educate those that are closest to you. Print the human body diagram that the Sjögren’s Foundation has on their site. Give it to everyone that you think needs education about the disease. It is a systemic disease, that seems to have a mind of its own. You never know when it will affect a body's systems. Seek a good Rheumatologist, one versed in Sjögren’s. Understand your PCP is most likely limited in their knowledge of the disease. You may be tasked with educating them as well. I learned, in case this disease has debilitated you, that it is recognized by Social Security as a disability. Lastly, you are not in this alone, seek support, whether it be counseling, support groups, education is also key. You are not a hypochondriac your symptoms are real!
What does it mean to "thrive" while living with Sjögren's?:
To me, thriving while living with Sjögren’s is a loaded question. It has been a 5 year journey to finally feel that my disease is under control rather than it controlling me. My Rheumatologist continued to tell me that we are in this together, that we are a team. Through trying different drug therapies and the tolerance of those, it has been trying at times. I have a wonderful PCP with three physicians, my own Optometrist (my Husband), brilliant Rheumatologist, an alright dentist, plus I sought car from on of the top Sjögren’s doc’s at Mayo. This Rheumatologist and the one I’ve been a patients for five years have a bit of a different philosophy. I use both of their therapies to help me manage my symptoms. I will say, I have been doing very well as of late.
How do you incorporate self-care with managing Sjögren's?:
Diet, trying my best to eliminate stress from my life and embrace peaceful mindfulness.
What inspires you to keep going on hard days?:
Keeping going on hard days. Working through it can be a challenge. I don’t make many plans. Why? Well it is disappointing to the folks you were planning with and mostly to yourself. I am trying to get better at this. On hard days it’s important to not push it. My anxiety of having a flare up has inhibited my social life. Again, I am trying to get better at this. How am I trying, well that has come from my time living with Sjögren’s, I’ve learned it is ok to say no, it is ok, to take a break for a while even if it isn’t convenient for everyone in the group, it is ok to say, I DO NOT FEEL WELL ENOUGH TO DO THIS or THAT! I’ve learned that it is ok to be the one that sits on the sidelines, I don’t have to be the one that does everything for my family. If I sit back it doesn’t mean I am lazy or that I don’t care what festivities are occurring around me. I can still enjoy the event as an onlooker. This is me navigating my new life living with Sjögren’s.
What’s your best Sjögren’s tip?:
Don’t consume sugar! Don’t stress! Be in tune with your body, don’t overdo.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month