Behind the Mirror of Self Management

I was reading a study on PubMed: Sorting Through The Evidence for the Arthritis Self Management Program and the Chronic Disease Self Management Program.

It was written in 2011 and is an analysis of previously published trials and articles about the two different self-management courses. Teresa J Brady, PhD is the contact person on the study which was done by a team of researchers.  She is presenting at the American College of Rheumatology (ACR) this year in a session that includes Kelly Young, aka RAWarrior, Dr Jeffrey Curtis and Elizabeth Riggs, RN. They'll be discussing the ways doctors can enhance their practice of medicine using patient engagement and self-management support strategies.

Through reading on the Rheumatoid Patient Foundation website I learned about the talk at the ACR and so looked to see what Teresa Brady had published. She sounds as if she is immersed in the field of self-management.

Taking a self management course is an eye opener for a chronic disease patient. Whether your coping skills are excellent or you are not so confident, you can learn more.  I took the course twice - once online and once in person. They were both effective in similar yet different ways. 

                                                 This is the book used with the online Stanford course

The online course is more convenient and is accessible no matter where you live. The other members were really supportive and helpful at all hours of the day and nigh when it was convenient. However there is no substitute for real people. The real-life course I attended is offered by The Arthritis Society in Toronto and other centers in Canada.

Social engagement is said to be a factor in living a long life. Do you think that online social engagement is as powerful as being involved with real life people? Also I have heard it said that the best way to live many years is to have a chronic condition and take very good care of it.

When I mentioned Behind the Mirror of Self Management I was thinking of the scene in The Wizard of Oz where Dorothy and the Tin Man,Cowardly Lion and the Scarecrow find that the Great and Powerful Oz is just an ordinary man.

In the case of self management the person behind the mirror is also an ordinary person. It's us.  We're the great and powerful people in self management.  No matter how good a program is we are the ones who make it work for ourselves and the others in it.

There is proof of benefits based on the results in Teresa Brady's paper. The idea that changing some of your behaviour can change your heath is not a new one. It's tried and true but when you suddenly find that you are sick it's hard to get past the psychological impact that can cause depression and anxiety. "Health distress" was a phrase that applied to me for years after diagnosis. 

Sometimes I felt that doctors were my main social contacts outside of work and home. Obviously that was a situation that needed work.

I would say that if you have never tried a self management course that it's a good idea to give one a try. Then if your doctor comes back from the ACR ready to adopt this strategy you can give him the benefit of your own insight. That would be empowering.












This year in addition to our exhibit booth, RPF Founder Kelly Young, RPF Advisory Board Member Dr. Jeffrey Curtis, and RPF Member and Registered Nurse Elizabeth Riggs, PhD will be speaking together at one of the sessions. They will present along with Theresa Brady of the Centers for Disease Control & Prevention, for a combined session titled: Enhancing Clinical Practice With Patient Engagement and Self-management Support Strategies.

The Groundhog is a Symbol of RA Awareness

At last we have a day dedicated to raising awareness of Rheumatoid Disease! This accomplishment did not occur overnight. Congratulations to Kelly Young, @RAWarrior, on this huge achievement that obviously took a great deal of sustained effort.  Here's the press release from Year 1 -  2013!

We hope that this will help to raise awareness of RAD (Rheumatoid Arthritis Disease) in new areas. The more awareness we can spread the better it will be for all of us now, and for those to come in the future.

Unfortunately Rheumatoid Arthritis Disease can't be treated as though we were in the movie "Groundhog Day" where we can work on our skills and refine our treatments until we achieve success and then are rewarded with a healthy normal life once we get it right.  Bill Murray had time to perfect all of his skills by repetition.  Not like us.

When we pop out of our burrows with RAD (Rheumatoid Arthritis Disease), whether the doctor sees the shadow (RAD) and treats it, or doesn't see it and we wait longer, the reaction is vital to us.

Ideally fast treatment that is the "right" one for us affects our lives dramatically, much more than the length of our winter this year will.  These are our lives that we are talking about here.

Awareness is important at all levels, from parents, to friends, to doctors who may not readily recognize this tricky disease. Lack of knowledge may cause you to miss that narrow window where the right treatment could bring you into remission. 

For too many of us we just don't have time to get a chronic complex disease, or we believe doctors who insinuate that it is all in our minds, or just due to our circumstances.

                                                       thejanedough.com

After all, we know we can cope with life - we've been doing it all along.  It takes something like being unable to get out of bed in the morning due to painful feet, or being unable to unlock a bathroom stall, or falling asleep over dinner to convince us that there's a problem.  Some of us realize things aren't right when we notice we're sleeping longer than our cats

                                                           Toiche and his pillow
 or other pets (The dog wants in)

                                                Dolly on her monkey bed

So I would urge everyone to build on Kelly's success and to spread awareness of RAD through articles, blogs, passing on the press release, an even getting articles in church bulletins.  This infographic/poster called RA Symptom's: A Patients Perspective in particular lays out symptom details very effectively for anyone to understand.

In the meantime I am going to try to be like this little fellow and hope that arming myself with knowledge will help me cut though all of the obstacles and shadows that will face me in the future.

Things you lose

No doubt about the fact that chronic disease takes a toll on the plans that we have for the future.

How much does that matter?  If you don't have concrete plans for your life your immediate goals are not thwarted, however most of us have kids, grandkids and relatives to deal with. RA can change all of your social relationships.  It is a large price you pay when you are not even able to pick up your children or grandchildren.  I think that is the most poignant problem.

This is me with long hair.  With RA it was just too much work, so even though it survived baby sneezes full of pablum and many sticky fingers it had to go.  Actually I think I still have it in a drawer somewhere.  Lost...

There is no easy answer for this.  RA is the "gift" that keeps on taking, so you have to go through the whole loss  and grief cycle over and over.  

We need to find coping resources that help us to make sense of events and to manage them.  These resources can be anything that works for you.  Most commonly social support and the strength you have within are the most help.

It is good to switch your focus to factors that promote your health and well being.  I have read so many blogs recently where people are doing just that. 

Like Arthritis Ashley collecting information and links to share with everyone and Tanya Martin working hard to get more people involved and with advocating to make things better.  

Also on a really big scale RA Warrior.  I bet that when Kelly started on her path she never dreamed that her blog would resonate with so many people.  

Don't discount the benefits of educating yourself so that you can understand what is going on in your life and try to manage some parts of it. 
                                                          

This learning skeleton is by Aaron Kuehn in case learning anatomy is on your To Do list

This is a huge topic and there will be more to come.