By: Annette McKinnon

Just as happened at the last session all 5 of the participants are here for today’s meeting. The major topic is Ethical and Professional issues this week, but as usual we go where the conversation takes us. Unlike Zal, I really like to sit at the head of the table because of the limitations in the movement of my neck. If I twist it one way for too long I get spasms and pain so it’s the best way for me to see everyone.

When it comes to the impact of the health care system on me I would say that it has improved greatly as I have become more knowledgeable. Almost like in raising children “it takes a village” in chronic disease. You need a captain for your team of health care providers. It used to go without saying that the leader would be the doctor – now the patient is taking on a much less passive role and calling in other health care providers as required.

The two biggest problems in not having enough information about healthcare issues is that decisions are often slowed down while you collect the info you need to make the decision, and (if it is urgent) that if you make a decision with too little info it’s not the best one.

What I have appreciated most in HCPs I deal with is encouragement. A kind or positive word at the right moment can make more difference in the long term than strong medicine. Here’s an example. A physio gave me a very simple exercise.

You imagine that a dagger is pointed at your bellybutton and is endangering your naval. You can be lying in bed for this. With the threat to your middle you pull the muscles in your abdomen in to get away from the dagger and hold for 10 to 30 seconds when first starting. Do 5 to 10 repetitions twice a day. If you get really strong hold it for up to a minute.

As a further enhancement, pull the muscles in and then try to move them up towards your face.

It’s hard to believe this does anything but I have a story.  After 22 years of RA with almost no exercise I started to do this.  After a few months I happened to see a different rheumatologist.  She checked my abdomen as often happens and she actually said that I had good abdominal muscles!!

I was shocked and very pleased.  It seemed like a miracle so I started to try harder with other easy exercises.  I won’t say I am in good shape but at least it’s better and all due to the doctor recognizing the results of the physio’s work. I can’t say that everything has been wonderful. There was a doctor who prescribed a lower dose of a drug I was already taking daily as a treatment for sciatica, a physio who suggested that with hands like mine why would I want to develop upper body strength, and worst of all the initial lack of treatment of my RA.

On the good side though, after 3 doctors missed diagnosing shingles, my pharmacist picked it up, and I’ve had the unwavering support of OTs through my years of RA.  And speaking of encouragement, I had a session with a social worker, and her main piece of advice was “Have more fun.”

Through all of this The Arthritis Society has been a big help in educating and encouraging me.  With some of the other areas though I have doubts that my information is circulated and seen as efficiently as is possible.  So I’ll join my voice with many other patients in our call for access to our own medical records, “Give me my damn data!” – epatientdave

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