Saturday, 26 September 2015

Two Inspiring Moms Day 7

At the heart of the experience of chronic disease, including caregivers as well as patients, there are more similarities than differences. Being included in care decisions, becoming engaged with the heath care system, worrying about clinical trials - all of these are areas where any of us might become involved in the future.

The blog I am featuring is by Erin Moore and is called 66roses. The link is to her blog post about MedicineX, which is also happening this week, and it made me think about powerlessness and hope. She mentions Paul Bataldon saying that hope is the primary motivator for co-production, and talks about Collaborative Chronic Care Networks (C3N) and helping others to find hope and move out of powerlessness. She's doing a workshop at MedX and this post is a great introduction.

A detail from Erin Moore's Walking Gallery jacket, showing the reason she is passionate about Cystic Fibrosis (65 Roses)

Among other great observations she has made in past posts: 

"Patients and caregivers are asked to give up time in their already full and complicated schedules to help out professionals. Meaningful engagement would be asking patients to be a part of the team, recognizing the value that they bring to the table, and showing them that you appreciate them through respect and compensation."

And this post, where Erin Moore and her 5 year old son talk about whether he will enter a research study, which led to her wondering about the idea of making the IRB (document that explains the research and the risks) information accessible to the children in studies. What a brilliant idea!

And that led me to think further about Dr Joyce Lee and her great Personal Design Experiment. This link goes to her slideshow showing the way she became convinced that design thinking would improve healthcare. We also can see the video her 6 year old son made to show his teachers how to use an epi-pen.

 Joyce Lee's son did his own illustrations

He has allergies that can lead to anaphylactic shock so his teachers need to know how to use it. After seeing his video I think we all get it.

You can find great bloggers in social media. Time spent online can have a great payback, and no sooner do you learn something new than you pass it on to others.

It was great through the week to read blog posts from so many bloggers I did not know, as well as old friends whose blogs I read often. Now that we've all met, I'd say let's follow Rick's example and try to comment more often. He's a Comment Star. Nothing makes bloggers happier than comments. 

Friday, 25 September 2015

Onset Story: Sjogren's Syndrome Day 6

Thinking back, I remember when I started to have eye problems about 10 years ago. When I got home from work my eyes felt so sore that I would have to lie down and keep my eyes shut for 20 to 30 minutes. When I opened them they would feel good for a while but overall just kept getting worse. 

Eyes half shut

Sunlight made me squint till my eyes were almost shut, and I started to find myself was sitting in front of my computer screen with my eyes half shut so that I could manage to keep on reading. This was a poor solution so I started to go to bed really early since my eyes hurt when I watched TV, read or used my computer. With RA (Rheumatoid Arthritis) that meant almost all of the things I did outside of work were causing problems.

Working was also getting difficult. I heard that daylight bulbs in office fixtures were better for eyes, so I had my neon lights changed. The air conditioning was a problem because of the airflow so I turned off the AC outlet over my desk.

It was getting frustrating that all these changes actually made no lasting difference. Finally I went to see my trusted optometrist, who told me I had dry eye. He gave me eye drops but using them as often as I needed to was a nuisance, and did not help enough.

Dry eye and dry mouth

It will surprise no one on social media that I started to google symptoms of health problems connected with dry eye, and when I found the term Sjogren's Syndrome it seemed that I had a match, especially when I found that 25% or more of people with RA developed Sjogren's Syndrome.

The Sjogren's community that my searches led me to is called Sjogren's World. It is a large and strong community with 'expert patients' as moderators. There must be 250,000 posts and replies and through searching and asking questions I soon had a lot of answers.

Finally I was able to see my rheumatologist. When I asked him if I might have Sjogren's, I think he said that half of his patients had Sjogren's. There's a clinic where I live that has a very long waiting list; He said that he could send me there if I wanted to see a lot of doctors, but put that way, I did not want to sound needy so I said no.

When I asked if I could try a prescription drug to stimulate more saliva because of dry mouth and choking he agreed it was worth a try, and I got a referral to an opthalmologist as well. Through reading and talking to a friend I had the name of a doctor who specializes in dry eye, so that's the doctor who finally helped me with the eye problems.

Eye drops and gels. Ready for dryness!

That was actually a fast diagnosis. It was less than a year after I noticed the problem that I had a name for it. Typically people see 3 doctors and it takes 2 1/2 years to find out you have it. 

I've written many posts about Sjogren's Syndrome. I am now a board member of The Sjogren's Society of Canada and attend the conferences regularly. This post titled "immune System Gone Wild" was among the firstof the series and has some hints about management if you want to know more. Most of the treatments are not cures; managing symptoms is often the only choice.

There are a few prescription medications which help, but it's like other autoimmune diseases and has no cure.

Wikimedia Commons Rue des Pyrenees

Who Educates Patients? Day 5, Wildcard 3

When I first got access to the internet and started to search for knowledge about my rheumatoid arthritis (RA) I used to read the CME (Continuing Medical Education) courses that were available online for doctors. Those courses were great ways to learn. Any words I was unfamiliar with I soon picked up through googling definitions.

When I found one written by my own doctor I was pleased to have an insight into the way he thought about treatment. It helped to know that he was fully aware of the recent research in the field, and did not reject it. 

Eventually that rich field of CMEs dried up, in part because they were sponsored by pharma, and the medical profession became more aware of the appearance of conflict.

My primary care doctor has many ways to learn more - journals, communications from the health care system, colleagues, conferences and through taking courses during the year. Specialists have even more avenues. Many work in academic institutions with medical libraries and good access to medical journals.

                          Might be an interesting   journal 

Patients who want to read original research papers quickly find that pay walls stand in their way, even if the research was funded through our taxes. (Definition of paywall: System that prevents internet users from accessing webpage content without payment.)

This is what a paywall looks like (Elsevier)

How does patient centered care fit into this picture? This is the new phrase used to describe the more modern approach to health.

Patient centeredness is defined as:
Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. 2
Do many patients reading this feel that their education about health choices can be adequately covered in a 10 to 12 minute appointment? Possibly yes for a simple sore throat, but I doubt many of us rush to the doctor or clinic for minor problems that seem familiar to us.

To use information that we find online, we non-professional users of information are thought of as vulnerable patients who need guidance from professionals, and yet the professionals don't have time to guide us, even assuming that they are familiar enough with online information sources to help patients find their way to the best online information. Social media is not yet a skill that is common in the doctor's offices I am sitting in.

I think many patients do a great job of learning from one another and of using their intelligence to work their way through complex problems while they gain health and digital literacy. That is a skill though, and to suddenly learn all that you need to know when you are also sick and dealing with the very complex balancing act that is your life with illness is hard to do.

To get to the point: Patients need ways to learn. The health care system is not simple and a lot of people could make good headway in learning if they had a little push in the right direction and some encouragement.

Chronic disease patients are pushed to the forefront in this. They've had a long time to learn and observe the realities of care. With chronic disease it's a lot like Groundhog Day, the movie. Every day you wake up and the problems present themselves, and everyday you need to deal with them. You get used to it, and then go on to share what you've learned with other patients.

This is the logo from Rheumatoid Awareness Day. No surprise it is a groundhog

What I'm calling for is better access to information, online learning for patients in a coherent course of study, and  conferences so that we can learn, hear new ideas, make connections and be able to join the team in healthcare. We're the largest stakeholders and we should have input into the decisions that affect us!

Not to mention that the money comes from us too - the patients and the public.

Empty wallet

As ePatient Dave says so often, "Nothing about us, without us."

Thursday, 24 September 2015

Five Things About RA or any Chronic Disease Day 4

1. RA helped me to develop a sense of optimism

When my health changed for the worse I became depressed about pain and fatigue, and was even more stressed and unhappy when I got a diagnosis of Rheumatoid Arthritis (RA).  I remember clearly that it was summer, and I was told to stay out of the sun because of my medication.

For some reason, my mind went back to my mother - she used to enter contests at one point when we were kids. I thought I'd try this home made solution! I started to enter and once I got started it was great to be looking forward to exciting calls, messages and letters. Gradually that positive feeling occurred more often.

I wish I could uncover the secret of being this happy

2. You need to be able to find things out and put things together.

When you suddenly find yourself with a health problem you have barely heard of, it is worth learning at least the basics about the illness and treatments. In the case of RA the process of getting effective care was too slow for me. If I had known more about the medications I would not have had to weigh the options and start a new treatment months later when I saw the doctor again. Being ready would have helped me to feel better sooner. Knowledge affects your outcomes.

Picture taken at Paul B. Helliwell Patient & Family Library at Toronto Western Hospital. You need to have your organs together

3. You need help

Hopefully not this level of help

Your primary care doctor is the person you see most often. Do the best you can to find someone who will work with you. With a chronic disease you can learn a lot and get help from other types of health professionals too.

With RA I really value the help of the rest of the team I have put together over the years - an Orthotist to make the orthotics that keep me from limping, an Occupational Therapist to tell me how to save my joints and find devices and ways to make life easier and a Physiotherapist to oversee the physical areas that the rheumatologist never seems to mention.  In fact my physio cheered me on for years as I struggled with dissatisfaction. It really helps when someone keeps saying "You're doing great."

4. You have to be persistent to get good treatment

I always hope for a great treatment that will work fast - like a bolt of lightning

Good treatment is not likely to find you. You have to search it out. If your first  doctor is wonderful, fine, but RA lasts a lifetime, so it's best to find a specialist you can trust, and also one who has up-to-date knowledge of treatments. Even if you want more conservative treatment at least the best doctors know which of the milder drugs are most likely to improve your health.

An example of persistence. My Doctor has to fill out this many forms to get people on a biologic drug.

5. You need support

They are holding each other up

Your family and friends (some of them anyway) will be good sources of help and support for you during your ups and downs with RA, but I'd say there's no substitute for a support group. At first I was unable to find an in-person group; now I have discovered one through volunteering for arthritis related causes.

My support group of choice is online. I've been in the same one for 15 years and we have grown very close. When you're worried and don't want to make your friends and family even more anxious the best people to talk to are others who have been through it before. They are invaluable to help you get through tough times.

On Twitter you can find people with RA using #rheum as a hashtag, or you can go beyond just talking to others who match your illness and try to make help others and change things that are wrong or less than perfect in health care. Helping others is one of the best ways for people with chronic disease to start going beyond their illness. Do you know the real secret of the self management courses you see?  It's in just deciding to take it - that's a first step.

Once you join they teach you how to set goals that will work for you. Even if you decide not to set a goal some weeks it still does you good because you are deciding what you want to do, not your disease. So there is my theory of self-management!

Wednesday, 23 September 2015

To the Newly Diagnosed Day 3

It's been thirty years since I finally found out what was wrong with my health, and the news that I had rheumatoid arthritis (RA) was devastating to me. Despite that, what I would most want to tell people with a new diagnosis of a chronic disease is "It gets better." 

Not to say that your diagnosis will go away, but it is possible to develop strategies to live with it and to feel happy and successful. Your life won't be what you expected of course, but that's not uncommon no matter how healthy you may be.

Just this week I saw the chart below posted by Cheryl Koehn on Twitter, with the comment "Knowing about this would have helped me at RA diagnosis."

She called it a great summary of the stages of grief in death, arthritis or other illnesses. I agree with that, though I did not believe in the up-side of the chart for many years.

When Cheryl developed RA she was a former Olympic Volleyball player. I imagine her plans for the life she expected were totally derailed, but she continues to be an achiever in many advocacy and awareness areas, with a book called Rheumatoid Arthritis: Plan To Win and also as the President and Founder of Arthritis Consumer Experts which publishes the Joint Health newsletter every month. 

Coincidentally I also saw Lene Andersen's film, "Live Bold, Live Now" this week at Cure Arthritis. She considered herself a "worst-case scenario" because of the consequences of her Juvenile Arthritis and RA. Now she is passionate about sharing her story to show that it is possible to live a happy life despite arthritis. She is now a photographer an author working on her second book at the same time as being the lead writer on the Health Central RA site.  

Both Lene and Cheryl are great examples of the Loss Adjustment side of Cheryl's diagram, the up side that I couldn't imagine when I felt so much isolation and loss of power due to my "chronic life." 

For me it was a great online support group, solid encouragement from people on my care team, and social media that made a big difference in my life and extended my horizons. 

Here's a big plus for people with a new diagnosis - the treatments for RA are much better now than they used to be. Below you can see my Walking Gallery jacket highlighting problems in getting a diagnosis, and the first treatment suggested to me. It's written under the aspirin bottle "Take 12 aspirin a day and come back in 3 months." (Hint: It didn't work)

Walking Gallery Jacket

My advice to you is to set new goals, do whatever you can to help yourself adjust to your new reality and try to have fun. It's been great reading all of the other blogs on #RABlogWeek.