Day 2: Lisa (Diagnosed at 37)
Please finish the following sentence: "Sjögren's has taught me...":
To be patient and kind to myself when my body "acts up".
What are your most difficult symptoms?:
My most difficult symptom has varied over time. At first it was the extremely dry mouth, joint pain and rampant dental carries. After 27 root canals and crowns I replaced my teeth with 4-on-1 full mouth dental implants and now my most difficult symptom centers around my dry eyes.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
I was diagnosed with Sjögrens and SLE at the same time so it is difficult to separate the two when it comes to impacting my life. I was forced to change careers from a high paying career in the film industry to a more predictable and very satisfying career teaching. Fortunately, my teaching job provided me with excellent health insurance! The School District also provided me Reasonable Accomodations with a full time classroom aide to assist me when I needed (to avoid the sun, be in a wheelchair, gather materials, correct papers, etc.). I also had just met my future husband when I was diagnosed and he attended all my "this is what you have" appointments. We have been together ever since. He has been my rock.
How do you effectively cope with the complexity of symptoms?:
In the beginning I was a research fanatic. In 1990 there wasn't much available so I read medical textbooks and joined my local Sjögrens Foundation to learn. I also met with a counselor who also had an autoimmune disease and she gave it to me straight. No sugar coating it. These diseases suck! You always start each day with at best a quarter tank of gas and must make it last. There will be good days and bad days. Simply hang in on the bad days follow your health plan And your days will get better.
What do you wish people knew about your Sjögren’s?:
It never goes away. All of their helpful tips are NOT helpful. I'm on it and I know how to manage my disease.
How do you incorporate self-care with managing Sjögren's?:
Sjögrens has been a large part of my life for so long that it's management is self-care. The eye care (drops and medication), mouth care, skin care (sunblock and moisturisers) vaginal care, etc.
What is your go-to Sjögren's product?:
Systane eye drops
What’s your best Sjögren’s tip?:
Never push yourself. There is always tomorrow. When you overdo, your symptoms flare.
Day 2: Lisa (Diagnosed at 37)
Please finish the following sentence: "Sjögren's has taught me...":
To be patient and kind to myself when my body "acts up".
What are your most difficult symptoms?:
My most difficult symptom has varied over time. At first it was the extremely dry mouth, joint pain and rampant dental carries. After 27 root canals and crowns I replaced my teeth with 4-on-1 full mouth dental implants and now my most difficult symptom centers around my dry eyes.
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
I was diagnosed with Sjögrens and SLE at the same time so it is difficult to separate the two when it comes to impacting my life. I was forced to change careers from a high paying career in the film industry to a more predictable and very satisfying career teaching. Fortunately, my teaching job provided me with excellent health insurance! The School District also provided me Reasonable Accomodations with a full time classroom aide to assist me when I needed (to avoid the sun, be in a wheelchair, gather materials, correct papers, etc.). I also had just met my future husband when I was diagnosed and he attended all my "this is what you have" appointments. We have been together ever since. He has been my rock.
How do you effectively cope with the complexity of symptoms?:
In the beginning I was a research fanatic. In 1990 there wasn't much available so I read medical textbooks and joined my local Sjögrens Foundation to learn. I also met with a counselor who also had an autoimmune disease and she gave it to me straight. No sugar coating it. These diseases suck! You always start each day with at best a quarter tank of gas and must make it last. There will be good days and bad days. Simply hang in on the bad days follow your health plan And your days will get better.
What do you wish people knew about your Sjögren’s?:
It never goes away. All of their helpful tips are NOT helpful. I'm on it and I know how to manage my disease.
How do you incorporate self-care with managing Sjögren's?:
Sjögrens has been a large part of my life for so long that it's management is self-care. The eye care (drops and medication), mouth care, skin care (sunblock and moisturisers) vaginal care, etc.
What is your go-to Sjögren's product?:
Systane eye drops
What’s your best Sjögren’s tip?:
Never push yourself. There is always tomorrow. When you overdo, your symptoms flare.