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deanie_canva

Deanie

Patient-to-patient topic: 
Managing the Systemic Symptoms of Sjögren's

What are your most difficult symptoms?
Eye pain, not making enough saliva, exhaustion, insomnia, headaches, & inflammation.

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 disease started with dry eye and mouth and then progressed to my liver and kidneys. I have vaginal dryness & increased bladder issues. Make "you" a priority with nutrition, sleep, and minimizing workloads.

What do you wish you knew when first dealing with this symptom/situation?
It's far more than dry eyes and dry mouth.

What is your best advice for another patient dealing with this symptom/ situation?
It's never just one solution but a series of ones for a progressive disease.

What are the top 3 over-the-count products or tools you use when dealing with this symptom/situation?
Natural anti-inflammatory herbs and diet. Coconut oil for moisture for my mouth. Eye plugs, lubricating drops &Restasis. All are part of managing eye pain from dryness.

How has Sjögren's impacted your life (either physically, emotionally, financially)?
I can not work like I used to. I'm making substantially less money. I hope to finish out my career & retire in 2 years. I'm realistically not sure that's going to happen, so I'm preparing.

What do you wish people knew about your Sjögren's?
It's getting harder to manage because the disease is affecting other areas of my body now.

How do you incorporate self-care with managing Sjögren's?
It's a daily routine of care. I have eye drops everywhere I sit & go. I have prescription drops & see a retina & optometrist for eye care every 3 months. I see the dentist every 5 months for care. I use a series of teeth cleaners. I see a Rheumatologist & Endocrinologist to manage my autoimmune diseases, along with a Urologist & cardiologist.

What is your go-to Sjögren's product?
Sustained lubricating eye drops. Sucking on lemons & coconut oil for mouth. High Vitamin B & magnesium to manage neuropathy & intestinal dryness.

What's your best Sjögren's tip?
Eating organically and staying lubricated in every way!