Part 5 Immune System Gone Wild: Sjogrens National Conference Dr Susan Abbey

Dr Susan Abbey is a psychiatrist at the University of Toronto who has a particular interest in the emotional aspects of physical illness, hi-technology medical interventions, and the physical and emotional impact of stress. She suggested we decide what affects us most and start from there when we try to make changes.

                         Dr Abbey during the round table discussion

She began her talk mentioning the positive effects and benefits of mindfulness or being "in the moment." That lesson was so significant to me because I had just broken a tooth five minutes before she began to speak and was so upset that I was debating going home. Instead I gave more thought to the present and remembered how much I had been looking forward to the conference.  The moment I was in was good and the problem could wait.

                             This fish has a broken tooth too.

Here is a link to a good resource about mindfulness and below is a quote from the page. 

"The term mindfullness refers to a quality of awareness that includes the ability to pay attention in a particular way on purpose, in the present moment, and non-judgementally. Mindfullness includes the capacity for lowering one's own reactivity to challenging experiences; the ability to notice, observe and experience bodily sensations, thoughts and feelings even though they may be unpleasant; acting with awareness and attention (not being on autopilot); focusing on experience, not on the labels or judgments applied to them". -- M. Krasner et al. ,2009"

Dr. Abbey pointed out to us that there is a difference between Health Status and Quality of Life (QoL). We measure QoL to determine functional capacity and well-being and monitor the changes in them. That helps us to choose and evaluate treatment options. Health status is based more on physical signs and symptoms. There are no studies on the quality of care in Sjogren's to this point and it is a very intrusive illness, as we also heard from Dr. Bookman. You may have to substitute other experiences or passions to replace what you lose to the illness.

She also pointed out that chronic illness takes a toll on the brain. Some effects of immune system disorders are depression, anxiety and brain fog. These are caused by chemicals and modulators.  A sub group of patients do worse because of genetics and immune molecules. 

Mood and pain drugs for Sjogren's cause a lot of trouble. It takes trial and error to get them right.  Much of this is biologically related, some is genetic.  In depression, treatment works for 50% to 60% of people, but doctors can't yet judge which medication will be best for specific people.

She also stressed the importance of Omega 3's (at least 1000 mg)  because we need the EPA, and also Vitamin D (she suggested 2000iu).

Omega 3's ready to go

The way the brain processes events and illness is affected by brain development and experiences in early life. Support in daily life is important. 


Better treatment often equals better function. It's a question of quantity vs quality.  When you find something fulfilling within the constraints of illness turn up the volume on the good stuff. 

Resources from Dr Abbey:

UCLA Mindful Awareness Research Center

Free meditation podcasts  

Canadian Mental Health Organization :

The Relationship between Mental Health, Mental Illness and Chronic Physical Conditions

Past Sjogren's Posts

Part 4. Immune System Gone Wild. Dr Carl Laskin and Dr Izchak Barzilay

Part 3 of Sjogren's Conference. Dr Bruce Jackson

Part 2 Immune System Gone Wild. Sjogren's National Conference Dr. Athena Papas

Part 1 Immune System Gone Wild Sjogren's National Conference. Dr Arthur Bookman

2012 National Patient Conference

Sjogren's makes Life More Complicated

Sjogren's Products

Rheumatoid Arthritis and Intimacy

In chronic disease when you think of intimacy or sex  there is always the question - Is it me or is it my health?  I never thought it was the rheumatoid arthritis, but with all of that pain and fatigue having a sex life was the last thing on my mind when I first became ill.  It used to be so painful when any part of me was bumped by accident that I would build a little barrier between me and my husband to protect my hands and feet. That is the most unromantic thing I expect I'll ever say in public.

As the years have passed I have resorted to all kinds of methods to wake up in the morning in better shape.  This now includes resting splints on my hands, another splint to keep one foot from moving in a painful way at night and a neck support collar which has helped with neck and shoulder pain.  But the upshot is not too pretty.  Add that to a strong desire for comfort and enjoying a duvet as my only cover because of the weight and awkwardness of covers and I am sure I seem antisocial as well as unromantic. I certainly don't look cool and beautiful in my own mind.

Depression is also an issue for some at any point in the road you take with chronic illness. That also puts a damper on things

Lately I found a study on PubMed.  This one is called "Evaluation of Sexual Dysfunction in Women With Rheumatoid Arthritis: A Controlled Study".   Sorry RA Guy and other men - I am sure this problem is not confined to women with RA but the authors did not study you.   Here's the link and another about Sexual Function in Women With Chronic Illness and Cancer

Are you surprised to hear that active RA has a measurable effect on your sexual function? I guess the answer is to get healthy overall to counteract this gap that can develop in our lives but there are not many solid ideas out there to help in this area. Maybe it seems to be a lesser issue with all the health worries that come with chronic disease. 

At the Sjogren's Conference this year there will be a speaker who will address this topic at the request of the members. It's a vital area in our lives but there is a real lack of advice.

When we're over 64 we'll still be together

The song below always makes me laugh because I can identify with it, with all of my occupational therapy help in the night.

Here's a song for all of the people out there sleeping with OT aids and CPAPs, along with their partners.


After the ball was over
Katie took out her glass eye
Took out her teeth to wash them
Hung up her hair to dry
Threw her peg leg in the corner
Hung her wax ear on the wall
You'd never recognize Katie 
After the ball.