We can’t manage our chronic disease by ourselves, unless we quickly graduate from medical school and then become specialists. That’s not too likely with a new diagnosis that has an impact on your health.
etsy NostalgicLinks
However, to take a guess, even average people don’t see doctors much more than two hours over a year. And that may be a high estimate. But even if you spent a whole 24 hours out of your year seeing doctors and other health care professionals, that leaves you with the other 364 days to take care of yourself.
There is one thing I have learned on Twitter. That is that health literacy is the greatest predictor of health. In this context literacy means Grade 8 or better education. I would go further and say that with a chronic disease you need to be able to do even more – you need to learn the medical vocabulary of your disease so that the appointments you have with doctors are as effective as possible. Many of us have likely had the experience of having to wait for the next appointment to decide on a course of action because we needed time to educate ourselves on the choices offered.
TheDecisionTree.com
I have used some formal resources to enable me to manage my RA better. The first thing I did was take a course called The Arthritis Self Management course (ASMP) offered by The Arthritis Society in Canada. It took 3 hours a week for 4 weeks and I ended up feeling more confident that some things I was doing were right and in some areas I could do better. The area that needed most improvement for me had to do with setting achievable goals.
simudell.com Steps To Goals
The program that the Arthritis Society offers is based on the Stanford Chronic Disease Self Management Program I was lucky enough to participate in this program also, as an online course. Talking to others with problems of their own and finding solutions as part of a group is very helpful. I found out today that you can take that course free by signing up online for Better Choices,Better Health
In fact much of the experience in these courses can be recreated on Twitter in terms of support, but not with the discipline and the fixed agenda of these workshops. They give you a tool kit to help you progress.
At one course I heard the story of elderly lady who had very little mobility. She built up her stamina by walking around her dining room table and increasing the number of circuits every day. Small steps to success can make a huge difference.
Anet has had rheumatoid arthritis for 30 years. She spent the last 20 working full time in market research. Now health advocacy and the quality of life with chronic illness are major interests. “It’s great to have time to blog and tweet and go out for lunch”. Follow her on Twitter @anetto
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Power Equality: Not Even on the Radar
Wednesday, 7 January 2015 Late last year I was pleased to be invited to attend a conference called "Reaching the Summit: Leading the way from Interprofessional Education to Practice". Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more of the members involved in the health team. It was a little disconcerting when I looked back at the list of Summit Registrants prior to writing this post and saw that under the title and the occupation columns the patients were all listed as "Patient Guests" in both columns. That seems Read More…
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The IDEO Design Challenge
The Design Track for ePatients at the Stanford Medicine X Conference this year was an experience that demonstrated the value of teamwork. Where else could you see a cardiac surgeon, a researcher, GP doctors and a venture capitalist working with a patient to find answers to a health problem posed by a patient? This is the way the challenge worked: two months before the MedX Conference the patients involved submitted problem statements to Dennis Boyle and his team at IDEO; participants got a shorter list back with requests for clarification and also received background links about design thinking and a Read More…
Tagged Under: design, empowered patient, MedX, RA, Rheutired, teamwork -
Is Seeing the Doctor 400 Times Too Much?
This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments. The 400 visits in the title is what it is because for seven years I went to the doctor's office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well. After that endurance contest I can say that for me the biggest advantage Read More…
Tagged Under: collaborate, empowered patient, methotrexate, patient communities, RA, rheumatoid arthritis, Rheutired, self management, weekly injection -
How To Develop Chronic Patient Syndrome
There are many stories about waste in healthcare. Some are ridiculous and some are based on misunderstandings and lack of knowledge. Here's my waste story: While I was being treated for RA, injectable methotrexate was prescribed for me because the pills caused too much nausea. The shots were intramuscular and I assumed that I needed to have a doctor administer the injections just like with gold shots. So every Wednesday afternoon I would leave work early, go to the doctors office, park and wait (and wait). This went on for seven years. That means 364+ extra doctor visits and at Read More…
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It’s All About Control
10 ways to maintain a sense of Control with a chronic illness It's easier to cope with chronic illness if you feel that you have some control over your life and your health. Feeling that everything is just spinning away from you makes life more difficult. Here are my first and best so far ideas. More suggestions are always welcome for a list like this. Please leave them in the comments. We all love to hear tips. With chronic illness you are forced to be your health manager so it is up to you to gather information and to make Read More…
Tagged Under: brain exercise, chronic illness, community, Dispositional optimism and coping with Pain, health manager, journal, online group, rheumatoid arthritis, Rheutired, self management, Sense of control, stressful experiences, support -
Do It Yourself Management of Chronic Disease
We can't manage our chronic disease by ourselves, unless we quickly graduate from medical school and then become specialists. That's not too likely with a new diagnosis that has an impact on your health. etsy NostalgicLinks However, to take a guess, even average people don't see doctors much more than two hours over a year. And that may be a high estimate. But even if you spent a whole 24 hours out of your year seeing doctors and other health care professionals, that leaves you with the other 364 days to take care of yourself. There is one thing Read More…
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Identity and Work (Permanent labor force non-participation)
When I was diagnosed with RA I was working part time in a bank as a customer service representative. The friendships with people I had known for years and with fellow workers were important to me. But with RA fatigue and bad feet it became difficult to do that job as RA progressed. It was a gradual change but continuous and unwelcome. A TD Bank in New York. Surprised to see familiar company elsewhere. I started working part time in market research at that point and found a sit down job on the phone was far more possible for me. Read More…
Tagged Under: fatigue, idleness, RA, rheumatoid arthritis, Rheutired, work