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
- More Health Mentor Stories
Health Mentor – Season One – Episode 3 – Zal
By: Zal Press The word "stigma" makes my blood boil. The session started out with questions about my hospital discharge experiences. For the first 6-8 years of my illness I was in and out of hospital like a revolving door. On discharge I would be visited by a dietician who would give me a standard "low residue" list of foods. Basically stuff to stay away from that would get stuck in my gut and give me an obstruction. The amusing part of this list is that it was the same one year after year and became increasingly blurry as a Read More…Tagged Under: interdisciplinary, marginalization, mentor, narrative, professionalism, safety, season one, stigma, university of toronto
Health Mentor – Season One – Episode 3 – Annette
By: Annette McKinnon I arrived for the final session and had no trouble finding the students. Because of bad weather and flu 2 were missing so the remaining three started with the questions. This module was about Patient and Client Safety, so in a way, with no hospital stays and discharges I have had it easier than some. We got into a discussion of how the ordinary preventative medicine can be overlooked in a patient with chronic illness when the focus is always on the main problem. Referrals are not always made to associated disciplines either when all of the Read More…Tagged Under: interdisciplinary, mentor, narrative, professionalism, safety, season one, university of toronto
Health Mentor – Season One – Episode 1 – Jennifer
By: Jennifer Ladrillo For years following my diagnosis, I believed that the only way I could find a job and truly be able to build a genuine, solid foundation for my career, was if I kept my “disability” a secret. I thought that in doing so, I would be protected from people judging me as “un-fit”, and from pitying me in any way. Now though, 14 years later, I am not only happy, but eager to tell my story to people (strangers at that!), openly and honestly - no holds barred! How had I come to be here? A girlfriend Read More…Tagged Under: interdisciplinary, mentor, narrative, season one, stigma, university of toronto
Health Mentor – Season One – Episode 2 – Annette
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 Read More…Tagged Under: ethics, interdisciplinary, mentor, narrative, professionalism, season one, university of toronto
Health Mentor – Season One – Episode 2 – Zal
By: Zal Press I’m looking at 4 vibrant young faces as we gather around a rectangular formation of tables in a small, bland meeting room that I found uncomfortable and opposed to my nature. I’ve made a habit of never sitting at the proverbial “head” of the table. Not at home or away. The implication of authority contradicts my principle of equity. I didn’t change my habit for this meeting either and found the “square” didn’t work. I much prefer a circle. Easier to see faces. In education, though, there’s always an authority. There’s judgement and punishment and there’s always Read More…Tagged Under: authority, interdisciplinary, joy, mentor, narrative, power, season one, suffering
Health Mentor – Season One – Episode 1 – Chrystal
By: Chrystal Gomes I was nervous. This was the first time I was to be a Health Mentor. Although I had shared “my story” time and time again, this was going to be different. This time, it could, and hopefully would, make a real difference within the context of a future medical community. My biggest dilemma: How much do I share? Do I share the good, the bad, AND the ugly? I was so nervous, I arrived at the building downtown one hour early. I stopped in at the coffee shop across the street for a comforting French Vanilla Cappuccino. Read More…Tagged Under: interdisciplinary, mentor, narrative, season one, university of toronto
Health Mentor – Season One – Episode 1 – Annette
By: Annette McKinnon It is interesting to be a Health Mentor and talk to students in various disciplines who will ultimately have to work together for the good of the whole patient. You have some great ideas Zal, for engagement. I told my group that there was a "Patient Commando" out there and I have no doubt you are much discussed, even as we speak. I think that in the past when I participated I talked too much - I am learning to shut up and answer the questions so that things can proceed better. The students were very interested Read More…Tagged Under: interdisciplinary, mentor, narrative, season one, university of toronto
Health Mentor – Season One – Episode 1 – Zal
By: Zal Press I came out of the subway into air that was just cool enough to keep me focussed on my thoughts rather than the weather. Throughout the subway ride I was riddled with anxiety about my new Health Mentor group I was about to meet. This is my second year in the program. As a so-called veteran I knew what to expect, but I felt that this was going to be different. The students were going to be different. And so was I because I also knew that I was going to be writing this blog about the Read More…Tagged Under: hope, interdisciplinary, mentor, narrative, season one, university of toronto