Rheumatic Disease Report Card: America’s Failing Grade

Rheumatic Disease Report Card: America’s Failing Grade

The American College of Rheumatology (ACR) has created an organization called Simple Tasks in order to help us live well. Last month, they released the 2018 Rheumatic Disease Report Card. As Chair of the Board of the Sjogren’s Foundation, I’m fairly knowledgable about rheumatic diseases and the status of healthcare, but even I was shocked at how poorly US States faired in this report.

“Living Well” is the battle cry of chronically ill patients, as in  I am Living Well with Sjogren’s Disease (or I want to Live Well with Sjogren’s). Living well is our greatest hope and our goal.  It is also the directive from the non-ill people in our lives: our family, our friends, our disease associations and our doctors.  After reviewing this report, I really have to ask:

How the hell are we supposed to live well when even the ACR gives America an overall C grade on disease care and an F on affordability? Subpar care cannot support a well-lived life!

No wonder we struggle!

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Can Vagus Nerve Stimulation Reduce Sjögrens Inflammation?

Can Vagus Nerve Stimulation Reduce Sjögrens Inflammation?

The past couple of months I have been working on vagus nerve stimulation in order to increase my vagal tone. By that I mean that I have been practicing different ways to activate my parasympathetic nervous system side of my vagus nerve. I have been doing this in order to practice better mindfulness and calm my anxiety and inflammation. My anxiety isn’t at a high level daily, but I do get quite worried about the long-term costs associated with having Sjögrens Syndrome.  And I worry about my ability to continue working long enough to pay for future major expenses. I hate that feeling. And of course, I always have a high level of inflammation. I hate that too.

As I began to investigate the different methods to stimulate my vagus nerve and activate my PSNS (parasympathetic nervous system), I became more and more fascinated.  This post explains why.

Or you can just stop reading now and start singing, loud and proud, like your favorite rock star! (more…)

You Don’t Look Sick! How Do you Respond to this Comment?

You Don’t Look Sick! How Do you Respond to this Comment?

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:

  1. Personality.
  2. Disease activity level.
  3. Emotional status.
  4. Time since diagnosis.
  5. 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?

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My Rituxan and Sjogrens Journey … Is it worth it?

My Rituxan and Sjogrens Journey … Is it worth it?

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.

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When Major Grief and Autoimmune Disease Collide

When Major Grief and Autoimmune Disease Collide

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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