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.

What Next 2015?

Last year on New Year's Eve I was thinking about my hopes for the coming year - they were simple but seemed like stretch goals that would take five years or more to achieve.

My ambition for 2014 was to be a Medicine X ePatient Scholar and to have a Walking Gallery jacket done by Regina Holliday. Both of those things happened in 2014, and I appreciate and would like to thank my social media and online friends with being an amazing help throughout the year. I'd also like to thank Regina Holliday for her great insight, and for inspiring people to think in pictures.

MedX was inspiring, exhilarating, intense and a huge chance to grow as an advocate and connect with like minded people. The jacket, with great timing, arrived in Palo Alto for the first day of the MedX conference. So much happened in those four short days.

Here's a picture of the jacket - it tells the story of my first years with RA and without a diagnosis.

Walking Gallery jacket by Regina Holliday - It's A Mystery

"It's A Mystery" is inspired partly by my life-long love of mystery books, especially those from the "Golden Age" of mystery. The front covers of the books from that time, and the mood in them is  still unmistakeable. That's the Toronto skyline in the background, with the CN Tower acting as the tent pole, or the beacon.

The doctor is a shadowy figure - if he knew the diagnosis it didn't help me much. 

His final piece of advice: "Take 12 aspirins a day and come back in three months" led me to see another doctor when that didn't help. Regina did a great job of bringing those times to life.

There I am lying on the ground with huge fatigue and two little boys, while my feet are so sore I can hardly walk. At the time I credited Diet Coke with the sudden weight loss. The doctor's explanation for the pain - "You're a busy mom."

This disappointing beginning to a story of life with chronic illness was what caused me to start to question my role as a patient and my relationship with doctors. With the story laid out so clearly on my back, I can use the circumstances of my non-diagnosis as a starting point. One thing I know - If things had gone better when I first had symptoms there would have been no impetus for me to be involved in health advocacy now.

With the story of my disappointment with a failure in healthcare is on my back when I wear the jacket, but that's the starting point. With it as a springboard I can easily talk about the passion I have now for the inclusion of the patient voice in decision making in health care.

Since I've been home from MedX I will swear that the idea of the "MedX Halo" is not a myth. I've been to six rewarding and interesting conferences since then, and have three scheduled for 2015. Working hard to learn more and advance the idea that the patient voice should be included at the decision making level in health care has been satisfying and the rewards outweigh the efforts.

We're a long way from seeing inclusion of patients as a common practice, but if we work together persistently we can advance change. I like this Margaret Mead quote:

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has."

In 2013 the National Forum on Patient Experience did not include patients. In 2014 there were many patients. That was a success.

In 2015 there is a conference coming up called Canadian Patient Relations Conference: Making the Invisible, Visible: Hearing the Patient Family and Caregiver Voice. There will actually be one patient in attendance - giving a keynote speech. That should be enough for patients, right?

Being a member of the Society For Participatory Medicine is another excellent way to attempt to keep up with the issues of participatory medicine and patient empowerment.

MedX ePatient Scholars & Student Leaders by @Hurtblogger

The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

Inspiration and Unmet Needs

This past weekend as I watched the MedX livestream and the associated Twitter timeline; I was saving tweets that impressed me. When a panel discussion came up called "Addressing Unmet Needs in Healthcare" I was prepared to take a 'brain rest'. But a week later I was still looking at this series of Tweets and finding them thought-provoking. Seeing a rebroadcast of that panel would help me to learn more. I hope it is posted in the future.

                                      I need real food

Stanford Medicine X @StanfordMedX

"There are 3 types of unmet needs: I didn't know, I know I should, I want to but I can't"-@AmyCueva #MedX

.@StanfordMedX @AmyCueva gr8 points-people often blamed for not doing "I know I shoulds" for health. Blamers don't acknowledge other unmet needs #medX

Susannah Fox‏@SusannahFox2m

3 types of unmet needs. Look for patterns. Anticipate. Take responsibility. - @amycueva #medx pic.twitter.com/DCrgr2s81l

InnoCiter (CarlaNB) @InnoCiter

Via @StanfordMedX: @AmyCueva: look for feelings, triggers, transitions, opportunities, partners #MedX #designthink #hcinno

@nickdawson: " 'No' is a barrier to innovation - it says 'stay comfortable, don't change.'" -@AmyCueva #MedX #designthink #s4pm 

Kathy Nieder MD‏@docnieder1m

@timautrey Talking about the 5C's that affect processes Culture, Conditioning, Content, Context, Choice #medx

"Design thinking starts with 'How might we...?'" -@dennisjboyle #MedX

Stanford Medicine X‏@StanfordMedX 29 Sep"I've never encountered too much of a disparity. At end of the day, everyone wants health. It's just how you get there." @AmyCueva #MedX

Amy Cueva has a powerful message. I suggest that you read Regina Holliday's blog post about the painting she did at Amy's conference called "Health Experience Design 2012." The post is called "Wind of Change."

If you don't know about Regina Holliday's work here is a chance to be introduced to it. It is illuminating to read about the reasoning that makes her paintings so deeply meaningful. She was once accused of being too able to call up emotion when she speaks about the deeply personal mural that started her journey to being a health activist artist. 

It is just not credible. Though I have never met Regina, when I tell her story to others I feel emotional even with such distance from her and Fred. The ideals she fights for resonate strongly with patients and have made her an inspiration. Having one of her Walking Gallery jackets is a great honour to anyone in healthcare.