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 ...healthcare 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. 

Chronic Diseases: More the Same Than Different

In September I wrote a guest post called "A Day In The Life" that appeared on HealthiVibe. Jeri Burtchell is doing a series of patient stories and has branched out to include chronic disease beyond her own. That's easier for me to understand now than it would have been a few years ago.

One thing I have noticed during tweet chats with patients is that people with ongoing health problems have a lot in common. Whether it is finding information, planning doctor visits, developing a website to help others, or just advocating for being included in decision making in healthcare, the disease doesn't matter as much as common issues about which we are passionate. Many topics that I instantly dismissed as not relevant to me have led to useful discussions and new friends.

In ovarian cancer, lung cancer, rare disease, diabetes or being a caregiver, I have found in all of these topics there are more similarities than differences. That may be part of the reason that the ePatients at Stanford Medicine X became a strong community so quickly, often greeting one another as if we were long lost friends rather than strangers.

Recently I came across a new issue that concerned me and where advocating passionately for myself in person had no effect on "the policy." When I was back in my natural habitat (in front of my computer) I realized the obvious - patients on social media are no longer alone. When I tweeted about my issue I found others across the country who felt the same and also agreed that we needed to work for change.  The issue is now an area of discussion with policy makers. We hope positive results will come from our meeting.

Including the patient voice in healthcare decision making can have impressive results, as I found out during the IDEO Design Challenge. Maybe it is time for a new sign.

Graphic by Lucien Engelen

Here are some links to Patients Included blog posts

One by Susannah Fox
And Leslie Kernisan

And I'll end with a quote from ePatient Dave speaking to a conference organizer: 

"I say this: want to know if you have Patients Included? Ask this: “Are there any actual sick people in the room?”

Validation and Online Communities

I have read many blog posts and consistently hear stories about patients who are not believed when they report symptoms. From doctors to family to strangers, people with an invisible illness hear comments like "It couldn't possibly be that bad" and "Why are you using your mother's handicapped placard?"

For a sample of comments by doctors look at the end of this blogpost by Kelly Young of @RAWarrior. These comments made by doctors at the conference are not likely to be surprising to patients with inflammatory arthritis, but if we have not experienced this we have heard reports from other patients.

Just this weekend a friend said she wanted to see a blog post about the type of experience she had during a appointment during the week. Her main symptom was a serious and recent lack of energy. After she described her symptoms the doctor said "Joanne, you've had inflammatory arthritis for 30 years. Your body is getting tired of fighting." Knowing her own body as well as she does that response was not good enough but what can she do?

Tough as it is to get good treatment from doctors who don't believe you, imagine your family and friends echoing those sentiments. Here are some quotes from online friends...

"People don't think that you have a chronic, painful, fatiguing disease if you don't look too bad and they expect too much from you.  Even my own family wants me to be like "before" though they all know what I have been through in the preceding years. Their "forgetting" is selective depending on what they want from me even though everyone is thoughtful and protective of me most of the time."  Julie

"One of the teachers - I used to help out in her class, voluntarily I might add. When I had occasions that I just couldn't stay on to help after work, I got the impression that she didn't quite believe that I was as bad as I said I was. She would often use the phrase, you’ll get better one day."  Sue

You're looking good today

"“You look so good, so young!” Oh how I wish I felt that way!!!!! No, people don’t understand. They don’t understand how when I hurt that it drains me and I just can’t do it all any more and have any energy left after. I’m going to vacuum today and that will pretty much drain me. If I go somewhere, that is all I do. No housework on those days. " Jeanie

"People come up to me and say "oh you're looking really well " and I actually feel like c**p..lol." Pam

Some weeks it sounds as though almost everyone with an invisible illness and a disabled  parking permit has been a subject of comments and nasty notes.

Nanaimo disabled parking decal

All of this takes a real toll on patients. There's a term for it too - Invalidation.  In fact "In patients with rheumatic diseases, invalidation has been shown to relate to worse physical and mental health and more pain." as seen in this recent study from the Eular 2014 abstracts.

The paper starts off with this statement  "The term invalidation refers to the patients’ perception that their medical condition is not recognized by the social environment. It includes non-acceptance, misunderstanding, disbelief, rejection, stigmatization and suspicion that the problem is exaggerated or purely psychological."

Here's another paper. This one assesses patient's perceptions of responses from others in an attempt to develop a measurement scale.

"The Illness Invalidation Inventory (3*I) assesses patients' perception of responses of others that are perceived as denying, lecturing, not supporting and not acknowledging the condition of the patient. It includes two factors: 'discounting' and 'lack of understanding'."

More awareness and more respect for patient reported outcomes will help on the medical side of things. Collaborative medicine may also make a difference as Drs try to engage patients in the decision making process.

It helps patients to find sources of online support. In one support group I know well members agree that it is a good way to talk about problems and fears for now and in the future without worrying the people closest to them. In these groups there is usually very little skepticism from other patients. That experience of acceptance and support, along with practical ideas can help to counteract invalidation in other areas.

Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions

" OHCs (Online Health Communities) help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice. "

Taking RA On The Road

Sometimes it seems chronic disease takes more care and maintenance than a delicate exotic animal. Going away from home needs careful planning and a lot of lead time. Travelling alone would be even more challenging than going with a partner. Some illnesses may be a largely invisible but the items needed for support and success caring for them are only too visible and overall they're heavy.

Here are some  examples of what helps make travelling easier for me.

The drugstore that I use made a set of small labelled vials for prescription drugs marked "For Travel". That helps reduce the volume of pill containers. 

For vitamins I used a muffin tin and saran wrap that sticks to itself to make little "pill hills".

I worry  about taking hard to replace custom-made splints even as carry-on luggage so I am using older ones that take up less space and are not so fragile. Breakage or loss wouldn't be as critical.

Long ago I got tired of pulling out tubes and containers of creams and moisturizers so I now put them in these sample size jars. It saves a lot of wear and tear on my hands and it takes weeks between fillings.

Finally the flip phone has been replaced. The iPhone seemed so slippery and small when I started using it. Even a sensible shell case was not quite the answer. The one below is perfect. It's soft plastic, has nice curves and the beak makes a great backstop. 

iPhone in case

For my one "personal item" allowed in addition to my carry-on on for the flight I chose a backpack. It's roomy and easy to handle. That makes it great for hands-free shopping and carrying a computer, cables and rechargers.

On the trip I took my Tranquil Eyes in case it was too drafty or bright during the flight. Using them can help dry eyes with Sjogren's Syndrome.

So far the thing I miss the most while travelling is constant access to the internet. It's so hard to go back to former practices like "remembering".

Another plus on the last trip was a new suitcase with 360 wheels. When the floor is smooth it's a bit like walking a dog. So easy to push, even though it is still heavy. Now that I'm so ready to go it's Saskatoon here I come!

Give the bird a carrot

As many countries try to control healthcare costs we will see more support for self-management, especially in patients with chronic disease. After all, we're living for long term with a problem that won't go away. We get tired of trips to the doctor and I'm sure the doctors get tired of us too. It's also easy to see that the way we manage our own health makes a big difference.

                                  Self Management ...then

Notice that Dr Chase has the answer for inflammatory diseases in addition to everything else.

When I googled "self management" and "chronic disease" the first result I got led me to the Stanford website and the "Better Choices, Better Health" program that they developed between 1996 and 2001. Their course they developed is used in the US, UK, Canada, Australia, Netherlands. It is not surprising that they are #1.

                                 Self management...Now

You can take their course on line or in person if it is offered in your area. It takes a day per week for 4 to 6 weeks.  One thing that is stressed in the courses is goal setting. Their aim is to give you a tool kit of skills that you can use to improve your health. 

Some of the apps I found online lately are enough to convert even a dedicated non-user. One project gives older people a virtual friend named Carmen who encourages them with personal feedback as they report their results in becoming more active. Carmen is a star!

Then I found Birds: The Stay Healthy or the Bird Dies version. You need to eat vegetables and exercise to keep your little friend alive. Maybe using apps is a better idea than I thought.

This study makes a good case for physical activity with Rheumatoid Disease if fun games don't tempt you as much as facts. 

My Past post on: Do It Yourself Management of Chronic Disease 

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 least 1000 hours of my time that was wasted. Not to even mention the white knuckle winter trips.

                                    www.transportation-tech.com

My rheumatologist then happened to suggest a clinical trial.  As part of the start up process for it I met with a nurse for an interview and in the course of the discussion she asked why I did not inject myself. Thank goodness she did. 

I had seen at least 10 different doctors in those 7 years, allowing for travel, locums and vacations and not one of them said a word about this possibility. At last I was spared the weekly visit!

That is why I suggest that in some chronic diseases there should be a resource person or advice line, ideally staffed by a nurse who has the time to discuss treatment choices, possibilities and ways to make life with a chronic disease easier. If it had not been for that one nurse a lot more time and productivity would have been wasted.

Lego Nurse

This new service would give non urgent sensible advice to patients with chronic illness online or by phone. Of course the answer may often have to be "Check with your doctor" but even that is a helpful answer because you have an opinion on the relative seriousness of the question.

And with a few stories like mine resolved every week the position would pay for itself.

Of course seeing my doctor for those hundreds of extra visits has led to us having a very good relationship based on my chronic patient syndrome. Yes, you develop that "disease" by seeing the doctor often.

Chronic Games

It's unlikely there will ever be a prize for any of these "sports". Sometimes though you have to laugh at all we go through for the sake of health.

It always feels like I should be in the Circus Midway when I try "Drop the needle in the Sharps Container." I miss more often than not, so I am getting lots of practice when I have to pick them up and start over.

Then there is the always fun 56 Pickup, modeled on 52 Pickup. What! You dropped a weeks worth of pills?  Too bad you'll have to pick them all up again. Maybe if you can't get them all your obliging husband will lie on the floor and roll under the bed to trap them.

This reminds me very much of Julie's incident from Real Stories of RA. You might say she is an inspiration.

It would be nice if this were just a game. Lucy dropped a pile of papers on the floor but the reacher was not enough help. So she squared them up with her cane and then took the cane and dragged the dog bed over near the papers. She was able to kneel to get them once she had enough padding. 

No dogs were moved in this operation.

There are also many other uses for that cane. Julie uses hers like a monkey's tail to push things into place or to get them out.  In the grocery store it is handy to to reach chips on the top shelf where no human can ever reach them. She can even help others!!

Does Suing Corporations Improve Healthycare?

People are talking about our need to improve our approach to non-communicable diseases (including chronic disease).  The main suggestion is that we improve health overall rather than deal only with sickness.  

One way this can be done is through a primary care system that is accessible to everyone, and through a strong public health system that is accountable to citizens, not to corporations.  I found a great letter that sums up my feelings:

"Do we really want to continue to live in a world where the oversupply and marketing of tobacco, alcohol, unhealthy processed foods, and soft drinks is tolerated simply to allow continuing profits for the shareholders of the transnational corporations producing and distributing them, while the taxpayer funds the health services and pharmaceutical response to the ensuing disease and injury?"

Letter from Sally Casswell of the School of Public Health at Massey University in Auckland.

That is a very strong statement that most of us can agree with. In fact the Province of Ontario is in the process of suing tobacco companies to recover some of the money we have had to spend to treat tobacco related health problems. Nine out of 10 provinces in Canada are suing so far.

Ideally the aim of the health care system should be to manage health, not sickness. This way the burden which  chronic disease adds to an individual's life could be lessened by identifying problems early and putting them into remission fast. Identifying and promoting lifestyle changes that could help to improve health habits and lessen the incidence of chronic illness is also a good goal.

This activity needs to go hand in hand with improved health literacy. It is possible that changing some of the language and labels in medicine can make instructions clearer. I would argue strongly that we need better education about health among the youngest schoolchildren which would continue formally until they leave school.

As Dr. Brian Goldman said at his address at the National Health Leadership Conference: "Health and patient engagement needs to be a core subject. It needs to start as early as preschool." via @ChristinaClarke #NHLC

Leonard Kish wrote a very informative blog post called "Emerging Heroes in the Health Attention War" and promises more to come about the "war to fight chronic disease before it starts".  I was most interested in the segment titled Changing Culture to Less is More about the work of Dr Victor Montori.

Here's a link to an article about childhood obesity called  "WHO urges tougher food marketing rules to curb childhood obesity"

History of the war on smoking (in Canada)

Tackling sickness at its source: An interview with TED book author Rishi Manchanda.  Prevent illness at its source

Blogging For Health

What do you think the best health strategy would be?  A bowl of fruit daily, a blog post at regular intervals or a multivitamin?

Some may say that's like comparing apples and computers.

    

Fruit courtesy of DH

From what I have been reading you are well advised to turn on the computer and start blogging if you are looking for a novel yet accepted method of dealing with chronic disease.

Creative outlets are distracting in a good way. When you are creating something it is a huge distraction from pain or unpleasant circumstances.  That's why we see people with hand problems adapting in many ways to keep from losing their creative outlets. 

                                                          garlic clove

                                  cactus & mutant bunny all knitted by Cat Beattie

The act of writing a blog is a creative work also. I read at The Seated View last week that Lene researched writing before she started her book and found two things essential to success as a writer. It was the second essential where she cited Dorothy Parker and Stephen King  that made me remember her post and look back as I was struggling with this one. To see the essentials have a look at her post here. 

One thing I have always appreciated in Stephen King is his ability to use details of music, books and surroundings to set his work in a specific time or place.  This is a quality you find in many blogs of all types, not just health blogs.  Here's my idea of a shelf of interesting books. You can see why advice from King might resonate with me.

I was advised to keep a journal as a method of improving my health in a self management course and was very skeptical of the value.  Now I am coming to realize that a blog is a lot like journaling and I can see benefits to continuing to do this. 

This is a quote from the Health Mentor program that I mentioned in this post. "Personal reflection has long been recognized as an important learning tool, where new ideas and concepts can become integrated into future critical thinking and practice." It is a learning tool for others as well as for the blogger, so blogging makes you feel good about sharing hard learned information.

                                         Rosetta Stone

If you are a person who likes to help others or is accustomed to being in what I think of as a "helper profession" it can be very satisfying to share your knowledge. Julia's past career as a nurse helps her to do a great job now at  Reasonably Well in sharing information about Sjogren's Syndrome and other "fun" issues like bursitis.  She's the only person I know who ever made cookies for her infusion nurses - Mousie cookies.

                                    Julia's mousie cookies

And here are some conclusions of a paper by Pamela Ressler, Y. Bradshaw, K. Kwan and Lisa Gualtieri. The data was gathered by online questionnaire and they say it warrants further study but it makes sense to me.

Communicating the Experience of Chronic Pain and Illness Through Blogging

"Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations.
Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness."

Volunteering With Chronic Illness

Many people diagnosed with a chronic disease become very knowledgeable about their health problems.  Some like Kelly Young turn their expertise and skills into a world-wide platform.  I read that 10% of people with Rheumatoid Arthritis Disease in the US are members of  RA Warrior    We all appreciate her advocacy and her awareness efforts with doctors and with government.

                                                                             Kelly Young


Another example of people with RA helping others is the project initiated with RA Guy's call for pictures of hands that resulted in the Show Us Your Hands project, which turned into an international movement to raise awareness of inflammatory arthritis.  The team that worked on this went on to produce a poster and a book for sale as a fundraiser.  What a successful project that is!!

Show Us Your Hands

Many others contribute through blogging and by providing on line support for their peers on Twitter, Facebook and online groups. Of course those in clinical trials also make a very concrete difference. There is a real spirit of teamwork in the chronic illness community.

                                                                  Teamwork

Aside from the online opportunities there are some programs that it's possible to participate in in real life if you are lucky enough to be close to a center that supports them. 

There's a very colourful patient I recently met who is most enthusiastic about the Health Mentor Program which I also take part in.  Health Mentors are defined as people living with chronic health challenges.  They meet and interact with groups of students in various health disciplines such as nursing,occupational therapy, MD, social work, physiotherapy and pharmacy.

In the groups the students explore the impact of a health challenge, collaborative assessments,ethics and professionalism, and patient and client safety.  I can't speak from a student point of view but as the person with chronic illness I find it very interesting to meet students who are on their way to achieving a goal that takes a lot of work and dedication.

The program is run by Sylvia Langlois who is Assistant Professor, Occupational Science and Occupational Therapy at the University of Toronto

The member I mentioned has asked patient participants to blog on his website.  He calls himself and his site Patient Commando so I expected to meet a man wearing camo and boots.  But no, he's one of us - a person living with chronic illness who is trying to do something about it and who has encouraged like minded people along the way.

                                   Zal Press Patient Commando
You've got to agree that this is a man who gets noticed.  Patient Commando creates social impact by providing platforms that amplify the patient voice.  Here's a  link to their site with 3 patient stories about the Health Mentor Program.

And here's a bonus link to a quiz that can help you to determine what kind of a volunteer you are:  http://www.getinvolved.ca/vquiz/english/   from The Arthritis Society

Things you lose

No doubt about the fact that chronic disease takes a toll on the plans that we have for the future.

How much does that matter?  If you don't have concrete plans for your life your immediate goals are not thwarted, however most of us have kids, grandkids and relatives to deal with. RA can change all of your social relationships.  It is a large price you pay when you are not even able to pick up your children or grandchildren.  I think that is the most poignant problem.

This is me with long hair.  With RA it was just too much work, so even though it survived baby sneezes full of pablum and many sticky fingers it had to go.  Actually I think I still have it in a drawer somewhere.  Lost...

There is no easy answer for this.  RA is the "gift" that keeps on taking, so you have to go through the whole loss  and grief cycle over and over.  

We need to find coping resources that help us to make sense of events and to manage them.  These resources can be anything that works for you.  Most commonly social support and the strength you have within are the most help.

It is good to switch your focus to factors that promote your health and well being.  I have read so many blogs recently where people are doing just that. 

Like Arthritis Ashley collecting information and links to share with everyone and Tanya Martin working hard to get more people involved and with advocating to make things better.  

Also on a really big scale RA Warrior.  I bet that when Kelly started on her path she never dreamed that her blog would resonate with so many people.  

Don't discount the benefits of educating yourself so that you can understand what is going on in your life and try to manage some parts of it. 
                                                          

This learning skeleton is by Aaron Kuehn in case learning anatomy is on your To Do list

This is a huge topic and there will be more to come.