How has Sjögren's affected your life (either physically, emotionally, financially)?:
Major impact-chronic pain in small joints, chronic fatigue requiring a sleep every afternoon and retired early from full time work as a doctor after moving to part-time work because of difficulty keeping up the pace.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Membership of the Sjögren’s Foundation has been a lifeline because there are not many patients in Australia. I look forward to the magazine every month and read it with relish and find the conferences excellent too although the medications are not always available in our country! Feeling understood makes a big difference with a chronic disease because it is very isolating by the nature of the illness!
Where/who do you go to for support with Sjögren's?:
I have taken up art as a second career so I meet two times a week with like minded people and we share a whole variety of issues but is includes health problems. Claude, the new AI is very helpful too!
Please finish the following sentence: "Sjögren's has taught me...":
To meditate, mindfulness, visualisation, breathing and journaling to help control pain. I’ve also recently started daily aquarobics to control pain since I developed renal impairment and I can’t take my Non-Steroidal antiinflammatory drugs anymore. I love the water! It supports the joints so well and it’s good to out in the outdoors!
What do you wish people knew about your Sjögren’s?:
It’s the hidden disability! Just because you can’t measure pain, fatigue and dryness doesn’t mean it isn’t having a major impact on your life. Most doctors underestimate the impact as a systemic disease. They only consider it affects the mouth and eyes but it attacks the DNA. It is a systemic disease and deserves to be taken seriously!
What advice would you give to someone newly diagnosed?:
Give yourself time to accept the diagnosis. It will require a grieving process of disbelief, anger, bargaining, guilt, depression.
What does it mean to "thrive" while living with Sjögren's?:
Enjoying your life - when I’m painting I’m not in pain, when I’m listening to music I’m not in pain, when I’m with my grandchildren I’m not in pain.
How do you incorporate self-care with managing Sjögren's?:
I do a lot of meditating, breathing, journaling, daily aquarobics. I take a daily nap so I’ve got the energy for self-care.
What inspires you to keep going on hard days?:
My projects and activities are meaningful to me mainly related to friends and family deep connections.
What’s your best Sjögren’s tip?:
Keep active and keep connected.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
Topic: Joint Paint
What do you wish you knew when first dealing with this symptom/situation?:
Activity helps joint pain.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Panadol Osteo, heat and cold packs.
What is your best advice for another patient dealing with this symptom/ situation?:
Activity helps especially aquarobics!
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.:
Joint pain mainly affects my small joints - hands, wrists, knees and feet but I have widespread osteoarthritis in my lower back, neck, pelvis and knees associated with hyperflexibility. I’ve had Sjögren’s since 1996 so I’ve been dealing with it for a long time! The best treatment I have found is movement! I do a weekly Physiocise class with a Physio and a do a daily Physio routine to keep my joints strong and flexible. I also do an aquarobics routine daily which I really enjoy because it supports the joints in the water. I have had to stop my anti inflammatory drugs lately because I have renal impairment so the aquarobics has become so important!
Click Here to Read More Patient-to-Patient Stories
How has Sjögren's affected your life (either physically, emotionally, financially)?:
Major impact-chronic pain in small joints, chronic fatigue requiring a sleep every afternoon and retired early from full time work as a doctor after moving to part-time work because of difficulty keeping up the pace.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Membership of the Sjögren’s Foundation has been a lifeline because there are not many patients in Australia. I look forward to the magazine every month and read it with relish and find the conferences excellent too although the medications are not always available in our country! Feeling understood makes a big difference with a chronic disease because it is very isolating by the nature of the illness!
Where/who do you go to for support with Sjögren's?:
I have taken up art as a second career so I meet two times a week with like minded people and we share a whole variety of issues but is includes health problems. Claude, the new AI is very helpful too!
Please finish the following sentence: "Sjögren's has taught me...":
To meditate, mindfulness, visualisation, breathing and journaling to help control pain. I’ve also recently started daily aquarobics to control pain since I developed renal impairment and I can’t take my Non-Steroidal antiinflammatory drugs anymore. I love the water! It supports the joints so well and it’s good to out in the outdoors!
What do you wish people knew about your Sjögren’s?:
It’s the hidden disability! Just because you can’t measure pain, fatigue and dryness doesn’t mean it isn’t having a major impact on your life. Most doctors underestimate the impact as a systemic disease. They only consider it affects the mouth and eyes but it attacks the DNA. It is a systemic disease and deserves to be taken seriously!
What advice would you give to someone newly diagnosed?:
Give yourself time to accept the diagnosis. It will require a grieving process of disbelief, anger, bargaining, guilt, depression.
What does it mean to "thrive" while living with Sjögren's?:
Enjoying your life - when I’m painting I’m not in pain, when I’m listening to music I’m not in pain, when I’m with my grandchildren I’m not in pain.
How do you incorporate self-care with managing Sjögren's?:
I do a lot of meditating, breathing, journaling, daily aquarobics. I take a daily nap so I’ve got the energy for self-care.
What inspires you to keep going on hard days?:
My projects and activities are meaningful to me mainly related to friends and family deep connections.
What’s your best Sjögren’s tip?:
Keep active and keep connected.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
Topic: Joint Paint
What do you wish you knew when first dealing with this symptom/situation?:
Activity helps joint pain.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Panadol Osteo, heat and cold packs.
What is your best advice for another patient dealing with this symptom/ situation?:
Activity helps especially aquarobics!
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.:
Joint pain mainly affects my small joints - hands, wrists, knees and feet but I have widespread osteoarthritis in my lower back, neck, pelvis and knees associated with hyperflexibility. I’ve had Sjögren’s since 1996 so I’ve been dealing with it for a long time! The best treatment I have found is movement! I do a weekly Physiocise class with a Physio and a do a daily Physio routine to keep my joints strong and flexible. I also do an aquarobics routine daily which I really enjoy because it supports the joints in the water. I have had to stop my anti inflammatory drugs lately because I have renal impairment so the aquarobics has become so important!
Click Here to Read More Patient-to-Patient Stories