Self Management: Join The Team

When writing about patient engagement it so often sounds like there are many people out there supporting this effort. In reality there are brief encounters with doctors and their staff members involved in patient care. The rest of the "support" community" such as lab workers and many of the technicians who conduct tests, are so jaded and overworked that often I just feel 'processed'. They are also far more protective of my data than is logical, even telling me that it is illegal to give me info about myself ever because it belongs to the doctor.

I've been fortunate to have allied health professionals who are very encouraging and full of good advice. I owe a lot to physiotherapists, occupational therapists and orthotists.

Sometimes I wonder if it's possible to have a chronic disease and still be considered a member of the "worried well."

                                            Worried and well?

I found this PhD thesis "Capturing daily fluctuations, flare and self-management in Rheumatoid Arthritis: The patient perspective." written by Caroline Flurey.  It has been published as a book and is well worth reading.

There were interesting insights into the way patients look at their lives. One is the finding of "four different experiences of daily life with RA: 

1. Feeling Good
2. Taking Active Control
3. Keeping RA in its Place, and 
4. Struggling Through." (Mostly male)

The other was this description of flares"
"Two different flare-types have been identified: "Inflammatory Flare" (defined by pain and inflammation) and "Avalanche Flare (defined by the cascading effect of inflammatory symptoms, emotions and life events)." She has great insights and the paper also is a good resource to identify past research relating to daily patient struggles with Rheumatoid Disease.

                                        solar flare from nasa.gov

Speaking of struggles here's a look at what my friend Patty says about things that make her indignant:

"I got copies of all the tests and reports that the specialist is sending to my primary doctor.  Well, on the notes under General Appearance the hepatologist noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of RA can make you look sick. I'm sure I will mention this to him when I have my appointment.  I mean, there is another way of saying this, isn't there?"

                                        You don't look at all well

And here is her experience with feet:

"I know a lot of rheumatoid arthritis patients have a high tolerance level for pain. My foot Dr told me that RA'ers really can handle foot surgery. "You can tell who deals with pain everyday"  he said "normal people whine a lot about it". Guess we don't whine as much because we're used to it. Have you tried New Balance shoes? They're a godsend.  My podiatrist recommends them with my orthotics."

                                        Bare feet difficult with RA

Feet were the problem that led to my diagnosis of RA. The pain was too much to deal with for the long term so I chose surgery. Now I have had my forefoot (bones near the toes) reconstructed.

Though doctors don't go out of their way to use this term anymore , forefoot reconstruction  is considered "salvage surgery".  The heads of my metatarsal bones have been removed so I don't get the “walking on marbles” feeling anymore.

                                                              Try walking on these

With good orthotics and an ankle brace my gait looks pretty normal and my feet are comfortable.

  
Even having the above operation does not stop RA It can progress through the foot. It progresses to the midfoot and then to hindfoot. At the hindfoot it can seem that you have pain in the ankle but it is really lower down in the small bones below and in front of the ankle. They can be fused to prevent pain, or they may also fuse on their own.

It's well worth the struggle to gain knowledge and become comfortable with the correct terms to describe your symptoms. It helps you to join your care team.