I am so proud to lend my story for this major US news article! The Sjogrens Foundation was able to attract the attention of the Health and Wellness Editor and get Sjogrens in US News & World Report!
The name of the article is Sjogren’s Syndrome: The Most Common Autoimmune Condition You’ve Never Heard Of by Anna Miller of US News & World Report.
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I am thrilled that the Sjogrens Syndrome Foundation has asked me to be the keynote speaker at the 2017 Sjogrens National Patient Conference. I spoke during the Awards dinner at the Seattle conference last year, and I am honored to speak again to our East Coast Sjogrens peeps.
Are you attending the event? The conference is March 31st-April 1st in the Philadelphia/Cherry Hill area. I’d also like your input…
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On November 7th my Rheumy called me to task and suggested I was in denial about the severity of my Sjogrens disease level. In fact, she challenged me with an email stating that the “long-term ostrich path is rocky” for the progression of the disease and further organ damage. If you read my last post on grief, you already know I was in a major relapse. Clearly, it was time to pull my head out of the sand and move to a more aggressive form of treatment. Last year we had discussed biologics as the next step, so I knew that it was time to begin my Rituxan and Sjogrens journey.
Before I agreed to move forward, I needed to have an in-depth drug conversation with my Rheumy and discuss the treatment experience with other patients. I had real anxiety about the treatment because once it’s in you, it is in you for months. To cut to the chase, I had my first Rituxan infusion on December 8th and my second on December 20th.
Continue reading “My Rituxan and Sjogrens Journey … Is it worth it?”
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!
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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!”