Determining the best Sjögrens Syndrome products to use for dry eye, dry mouth, (and other challenges) is such a personal process. We all have varying degrees of challenges and different products work better for some people than others. But asking each other “What are your favorite products” is still one of the most common conversations I have with other patients. You never know when someone has tried something new that works for them and could also work for you!
This post is about the best products that work for me. I have focused mainly on some supplements and items for dryness. Addressing pain and fatigue will be a different post.
Take a look and see if some of these ideas might help you. And if you have tried products that you like even more, please do comment and let us all know about them!
Continue reading “Best Sjögrens Syndrome Products — My Daily Survival Kit!”
We’ve all heard it… You don’t look sick! When you live with an autoimmune disease, this comment is common. How do you react and then respond?
There are times when I’m happy to hear this comment and times when I’m displeased. I do have a prepared response for this statement, but it doesn’t always fit my emotional or intellectual needs at the time. I hear the comment often enough (and I know you do as well) that I thought it a worthy topic to explore. My hope is that this article gives you ideas to help you craft your best response for any situation.
I believe there are a number of factors to consider when determining the best response to You Don’t Look Sick. Consider your:
- Disease activity level.
- Emotional status.
- Time since diagnosis.
- Relationship to the person.
Each time someone tells you that you don’t look sick, you need to examine your answers to all of these questions and ask yourself the ultimate question:
Why do you care?
Continue reading “You Don’t Look Sick! How Do you Respond to this Comment?”
I am so relieved that it is 2017! I am happy to say that I am feeling my usual self today. But it was hard work getting back to emotional and physical status quo — because the last four months of 2016 was absolute shit!
This blog post is about how the emotional stress of a major life event collided with my Sjögrens, caused a major Autoimmune Disease relapse, and what tools I used to pull myself back up to my usual state of normal. I also, now, have a game plan for the next major life event!
Continue reading “When Major Grief and Autoimmune Disease Collide”
My friend Sarah Schafer, a Sjögrens patient and an MD, wrote a message on the Sjögrens List Serve that I thought should reach a wider audience. Her thoughts on autoimmune fatigue are valuable and her personal experience with fatigue echo the experiences of so many Sjögrens warriors! I also have fatigue and mostly give up social activities in the evening so that I can work most of the day (not a quality-of-life choice I like). So I think I will look more closely at these tips from Sarah…
Sjögrens fatigue – and all autoimmune fatigue – is a clinical conundrum. No one really knows the cause, although there is some interesting research being done by a neuroscientist in Alabama who may shed some light on the underlying cause soon.
Fatigue is unrelated to blood tests (e.g.- sed rate, SS-A) etc, or even severe organ system involvement. The study I posted recently (article titled, “Fatigue in Sjögrens: A Paradoxical Response. Decreased pro-inflammatory cytokine levels tied to higher levels of fatigue”, by researcher Wan-Fai Ng from the UK) showed a surprising inverse correlation with fatigue and some inflammatory chemical levels in the blood. This is the opposite of what you would expect, which goes to show, we really don’t know. Fatigue is a prominent symptom in Sjögrens (70% disabling) and other autoimmune diseases.
Fatigue is my worst symptom. It is what most keeps me from having a better quality of life, despite many other serious symptoms.
Continue reading “Sjögrens Fatigue – an Autoimmune Conundrum!”
I spend a lot of time trying to learn best practices for caring for my Sjögrens so that I can live well today and prevent as many medical issues as I can in the future. In fact, I would say that I’m very well-educated in product options, tips and medications. This doesn’t mean that I always practice perfect self-care discipline, but I certainly know what I should be doing.
Oral healthcare has not been an area where I have been lax! I use my Sonicare toothbrush, xylitol toothpaste and mouthwash, prescription fluoride toothpaste (and leave it on), and I use MI paste (calcium phosphate creme). I take Evoxac. I see my dentist three times per year and I brush after meals. And of course, I have xylitol mints throughout the day.
I have had one cavity the past twenty years…until now. I was horrified when my new dentist said:
“You have fourteen cavities that we need to fill, and the sooner the better!”
Continue reading “Shame on My Dirty Mouth! Yep, #ThisIsSjögrens!”