Sarah
Patient-to-patient topic:
Dryness and Sjögren's.
What do you wish you knew when first dealing with this symptom/situation?
How many ways dryness can present itself.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Omegas, xylitol mints, tallow products.
What is your best advice for another patient dealing with this symptom/ situation?
There are ways to help alleviate the dryness without being in constant pain from this symptom.
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.
My dryness was so severe I couldn't open my eyes in the morning, I had a constant headache that made me nauseous, my skin would crack, burn and bleed. I dealt with many UTIs and lacked the saliva to break down food. Dryness also effects my ability to sleep, and has an effect in intimacy. You can help alleviate some of these things without taking another prescription, or covering yourself constantly in products - there are other solutions!
Please finish the following sentence: "Sjögren's has taught me..."
The importance of listening to my body.
What are your most difficult symptoms?
Extreme dryness, tension, joint & musculoskeletal pain.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I cannot physically exert myself like a woman in her 20s should be able to, I sustain injuries very easily, deal with many mental battles because of the pain my body experiences. Financially it's very costly trying to find solutions to minimize the pain. It has taken many personal freedoms away and often leaves me feeling very overlooked or misunderstood.
How do you effectively cope with the complexity of symptoms?
My faith is my biggest source of hope. I have a wonderfully supportive husband who has seen my pain and struggles since we met in middle school. I seek alternative care and solutions from a holistic standpoint.
What do you wish people knew about your Sjögren’s?
That you often cannot physically see what we are going through. It can feel very isolating.
How do you incorporate self-care with managing Sjögren's?
My whole life and day to day has become an effort to simply care for myself. It's an exhausting job.
What is your go-to Sjögren's product?
Lmnt electrolytes, PRANA mat, homeopathic remedies, and a good therapist.
What’s your best Sjögren’s tip?
Don't believe for a second you are not worth taking care of. Your needs come first.
Sarah
Patient-to-patient topic:
Dryness and Sjögren's.
What do you wish you knew when first dealing with this symptom/situation?
How many ways dryness can present itself.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?
Omegas, xylitol mints, tallow products.
What is your best advice for another patient dealing with this symptom/ situation?
There are ways to help alleviate the dryness without being in constant pain from this symptom.
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.
My dryness was so severe I couldn't open my eyes in the morning, I had a constant headache that made me nauseous, my skin would crack, burn and bleed. I dealt with many UTIs and lacked the saliva to break down food. Dryness also effects my ability to sleep, and has an effect in intimacy. You can help alleviate some of these things without taking another prescription, or covering yourself constantly in products - there are other solutions!
Please finish the following sentence: "Sjögren's has taught me..."
The importance of listening to my body.
What are your most difficult symptoms?
Extreme dryness, tension, joint & musculoskeletal pain.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
I cannot physically exert myself like a woman in her 20s should be able to, I sustain injuries very easily, deal with many mental battles because of the pain my body experiences. Financially it's very costly trying to find solutions to minimize the pain. It has taken many personal freedoms away and often leaves me feeling very overlooked or misunderstood.
How do you effectively cope with the complexity of symptoms?
My faith is my biggest source of hope. I have a wonderfully supportive husband who has seen my pain and struggles since we met in middle school. I seek alternative care and solutions from a holistic standpoint.
What do you wish people knew about your Sjögren’s?
That you often cannot physically see what we are going through. It can feel very isolating.
How do you incorporate self-care with managing Sjögren's?
My whole life and day to day has become an effort to simply care for myself. It's an exhausting job.
What is your go-to Sjögren's product?
Lmnt electrolytes, PRANA mat, homeopathic remedies, and a good therapist.
What’s your best Sjögren’s tip?
Don't believe for a second you are not worth taking care of. Your needs come first.