Should I Stay or Should I Go?

Thanking about a change in medication brings this song to my mind.   Should I Stay or Should I Go? by The Clash

Changing medication is a dilemma unless you know that your current medication isn't working. In that case, most likely you will try what you and your doctor collaboratively decide on as the best choice for you. (That last statement describes the ideal situation between doctor and patient.)   

The real problem comes when you think the way you are feeling now is just not good enough. Making this decision is tough. With a chronic disease you get used to feeling less than wonderful most of the time and you may not even realize that "better" is achievable. 

WikimediaCommons DeRuzne

It's a gamble. Do you hold the cards you have and stay with the status quo, or take a risk that a new (to you) medication will improve your life? If you can manage to go to work every day, but have no energy at all once you get home can you live with that? 

Here's an abstract from a poster that was presented at the American College of Rheumatology meeting this year. It's called "Understanding The Preference to Stay With the Status Quo". It seems that the positive emotion of hopefulness has a large part to play.

To me hopefulness and optimism go together. Could this mean that optimists change drugs more readily? Are they more receptive to the current "Treat To Target" strategy?

For more about the push for treating to target here's another link to a paper by many leading rheumatologists. 

Learning to be Healthy

This article titled What Makes Canadians Healthy or Unhealthy contains an interesting discussion of why just spending more money on health care will not improve health in the general population. Many of our health problems are influenced by factors we can influence either alone or collectively as a society. 

There was an online article in the news lately talking about the Nurses Study. It stated that if you eat a good diet in your middle years you are more likely to "live long and prosper".  Here prosper means having no diseases that interfere with your work and enjoyment of life.

We have never been in a better position to find out what we need to know to stay healthy. My dad had a book of advice called "Dr. Chase's Recipes" which gave him advice on common illness. More than 100 years ago it was second only to the Bible in popularity, and sold over 4 million copies. We've come a long way since then, and we still have the same desire to know how to take care of ourselves. 

Doctor Chase from my Dad's own copy

You can find so much more accurate information now through online resources than you ever could from Dr Chase.  The internet is like a giant all-you-can-eat buffet. 

The hardest part is discovering which resources will do you the most good. In one sense it's like a first trip to Disney World where every attraction looks equally good. The truth is that they're not equal and planning the trip with a guidebook can help you hit the high points and maximize your time.

So who can you trust for your online research? Everyone says their own site is excellent.  Dr. Google gets more visits than anyone but beware - the loudest voices and top-ranked sites that come up are not always the most accurate.  On the plus side Google has changed the way it ranks sites so that credibility is more likely to be near the top of the ranking.

Knowing who and what to trust is a skill that can be  acquired, but it takes work and judgement to learn to do this. Lectures, webinars and other resources made available by credible and mainstream organizations and advocacy groups are often a good place to start you out on your search. 

Social Support is a plus 

It's when you begin to educate yourself that you need the most help to get on the right path. Here are some ideas:

Sign up for the Reaching Out with Arthritis Research (R.O.A.R.) webinar/seminar which is held in the fall every year in Vancouver Click here for past events and to hear patients, doctors, researchers and ethicists talk about the benefits and harms of using online technologies in health and healthcare.

If you have Sjogren's Syndrome you could attend the Annual Patient Conference. This year - the 10th Annual Conference - the line up of speakers was amazing. I have wanted to hear Dr Robert Fox speak for years. Now I'm looking forward to the On-line Webinar in 2017 on Oct 21. It's called Navigating an Immune System Gone Wild.

If you're starting to learn you'll find get reliable information. If you are already experienced you'll hear about the latest research. Involved patients have better outcomes!

Many pathways to knowledge

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!

Sjogren's Syndrome Lectures

Sjogren's Syndrome is an intrusive illness to deal with and it takes a lot of searching to find answers. While looking for links to post I came across these lectures by Dr Arthur Bookman. He's the Director of the specialized Sjogren's Syndrome Multidisciplinary Clinic at Toronto Western Hospital.

The first lecture is called What Our Patients Have Taught Us and has data about the survey study done among patients. It's a large file with pictures of the Schirmer's test and more.

It's continued in the second file and is on a very professional level since  it is a teaching lecture.

You may find in reading this that you have to look for some definitions. That's an effective way to learn correct medical terminology. This helps your ability to discuss Sjogren's Syndrome with your doctor.

Virtual both for Sjogren's from WAAD. Booth and lecture are virtual

Health literacy is strongly connected to good outcomes in illness, so the more you learn the healthier you are likely to be.

If you like to read scientific studies and lectures you could follow @sjogrensca on Twitter. Sjogren's Canada tries to post a new link to a study or useful fact every day. I still find that www.dry.org is a good source of useful tips. Dr Robert Fox, a Sjogren's expert put that site together.

Patient's Role in Healthcare

I participated in a tweetchat a few weeks ago about an upcoming 2-day conference that occurred in October. It was called the "Second Summit for Sustainable Health and Healthcare" and put on by the Conference Board of Canada.

As the chat went on I looked up the meeting agenda and saw no patients included; however today when I checked again to confirm my impression there was one! Dr. Sholom Glouberman, the President of Patients Canada, was the moderator of a panel called "From Beginning To End - Patient Centered Care". He certainly has credibility with patients after his years with the organization now called Patients Canada. 

From PatientsCanada #conf2013

The topic of sustainable health and healthcare ought to be deeply interesting to anyone who is ever a patient. Not only is everybody in need of care at some points of their lives, we are also the source of the funding.  Patients are the major stakeholders in healthcare.

Most of the people at conferences are in the healthcare field or involved in a health-related business. They are not penalized by loss of income when they attend job-related events. 

It is difficult for patients who are not affiliated with health organizations to pay high registration fees, and to take time off work to attend, yet I believe it is important to include them in conferences in ways that are affordable. 

Here's a link to a terrific post by Leslie Kernisan, MD Patients Not Included where she talks about patient inclusion and the MedX experience. She makes her points so well.

There are ways to help include patients to attend health events -- such as scholarships as offered by Stanford MedX, or Mayo Transform. Reduced admission fees or free admission as offered by some European conferences would also help patients to stay informed and engaged.

In social media we see a lot of discussion about the move to include patients in conferences and change initiatives.  As Paul Gallant of HealthWorksBCsaid during #cbochealth chat “Our health system is profoundly undemocratic. That needs to change.”

We need informed and health-literate consumers to be involved in healthcare to help to make it sustainable. 

I agree with Lucien Engelen when he says leaving patients out is just like people at your work having a big meeting about you...without you.

The movement to include patients as stakeholder partners is more evident in Europe and the US than in Canada. 

heritage-history.com

Patient engagement is said to be the Holy Grail of healthcare – the equivalent of a blockbuster drug. Highly-engaged well-informed patients cost the healthcare system less money and tend to influence other patients towards better health.

Patients want to share, collaborate and co-operate. They want to transfer the knowledge they have gained through years of coping with health problems.

Patients need to be involved.  Doctor’s visits take at most two hours a year in total for people of moderate health. The rest of the time we are on our own. Self management is becoming essential to keep the focus on health, not treatment, especially in chronic disease.

Things work more smoothly and economically when patients know more and understand the system .

Also, patient involvement can trigger ‘aha moments’ for HCPs (Health Care Practitioners)

Changes in paternalistic attitudes may help to change patient behaviours and to empower and activate patients to spread what they learn rapidly and effectively, often through social media.

Patients are good at helping others cope with the small stuff in health care.  I wrote a post giving tips about injecting biologic drugs last March. It had more than 1,000 hits in one week alone. People value that form of narrative information. 

What do we do to increase the number of active patients? That's a question needs an effective answer.