Aging and Pain Pills: Julie's Viewpoint

Pain medication is a big issue for those with chronic disease. Julie a US member of our support group has some complaints, based on her experience:

"Someone who doesn't know what real pain is has made the rules.  They are more worried about drug addicts than patients in pain.  It is difficult to find a doctor who will prescribe pain pills and they keep close tabs on the number of pills a person can have.

They were trying to stop the "pill mills" where controlled drugs were being sold to addicts and they closed down several "pill mills" in Houston.   BUT - at what cost to people who really need pain relief?

Now, it is very difficult to get pain medication.  If a person goes to a Pain Clinic, they make a
the person fill out pages of forms - some forcing a promise that they will absolutely not get pain medication from any other doctor or place.  There is also a page telling people to be very careful with their pain medication because if a person would accidentally lose or somehow destroy the pills (by dropping them on the floor or in water etc.)  they will NOT be replaced.

A drawback of the Pain Clinic model is that patients have an extra appointment every month for testing and to get another prescription for more medication.  A Big Hassle! and even harder on the elderly and the poor.

My Internist prescribes the lowest number of pills (Hydrocodone) at the lowest dose for me.  He doesn't really want to do that and he said he only has 2 patients where he will write a controlled drug prescription.  He said he only does it for me because I am a long-time patient, he knows that I suffer from RA and that I am really in pain. I am hopeful that he will keep doing that as I don't want the hassle of having to go to a pain clinic every month, now that I am 80.

Pets can help people deal with pain

The insurance companies keep tabs on what and when and how much a person can receive and they won't let any controlled medication be filled early - it can be filled 3 days before a person has their last pill. (So if you need pain pills forget that vacation)  This is what my pharmacy told me.  Other pharmacies might have different policies.  I do know my doctor will not re-fill a prescription before 30 or 90 days are up depending on the medication.  The prescription has to be on a green prescription paper with all of the doctors drug numbers on it and it has to be taken to the pharmacy in person and handed to the pharmacist.  It can not be telephoned in or re-filled any other way.

Many of the Pain Clinics will make people try other methods to ease their pain before they will prescribe medication.  This situation really isn't fair to sick people. Obviously it will help some people to cope with their pain using less medication over time, but we all know that "One size fits all" is a fantasy"

It also makes you wonder why insurance companies have taken on an enforcer role in the war on drugs. I get the feeling that they feel more able to take care of my health than my doctor can and I feel that is wrong.

Most of these are going back to the drugstore - wrong strength, now off the market and inferior generic

Patient Relations

Here's the background on the Patient Relations offices you may have noticed in hospitals in Canada:

“A well‐established patient relations structure and process, supported by the right personnel, is key to identifying gaps between patient expectations and experiences of care, and managing perceptions of patient expectations and quality of care.” From Excellent Care For All Act

To strengthen patient relations processes in Ontario’s hospitals... they are required to have patient relations processes in place and make information on these processes available to the public. Regulation 188/15 adds to these requirements; specifying minimum standards regarding the retention of data, providing standards for keeping patients or complainants informed, and ensuring that hospitals have a specific patient relations process.1

I was lucky enough to attend a conference where many patient relations professionals were sharing information about their work.

Some had inspiring examples of meaningful engagement with patients and family caregivers, where they were regularly collaborating with them on projects and acting on patient ideas and input. 

Many talked about plans to start involving patients in their hospitals but had not yet started to work on it. In some cases they were very busy just keeping up with their everyday work. In other cases senior management (or other staff) was not behind their efforts.

They presented lovely charts and graphs to their peers showing the types of patient issues they had to deal with, and how quickly they were able to resolve problems were presented. But... after hearing my friend's story about a patient issue that she wanted to have looked into, I wondered how they define resolution. When she asked her hospital contact for a progress report on her complaint she was told her case was closed, though she had no word of any results or consequences.

Patient Relations can't help this 'patient'

Despite sincere talk of being patient centered, there were a few comments I heard that sounded tone deaf like these two:

We'll "give" you (ie patients) decision making authority as long as it's a consensus.

And the idea of staff deciding "What is it that you want these people to say?" in the area of changing the conversation in making films for internal staff training makes sense in one way, but can also be interpreted just the way it sounds.

On one occasion I tried to compliment the hospital on a positive change but my call was not returned. The only time I made a complaint, about an issue that cost me an extra year on a waiting list, I was unhappy with the result. 

Patient experience is recognized as a method people use to determine the quality of their care, and the feedback that patient relations offices get reflects the experience. The insight it gives can help to drive change and quality improvement. 

I learned just last month that Accreditation Canada has made Patient and Family Centered Care a key standard starting in 2016. The presentation I heard at their workshop was impressive and their resolve was unmistakable.

The big difference, and you may have seen signs of this already, is that instead of doing things 'for' and 'to' patients, they will now focus on doing things 'with' patients. That means we'll see more information sharing, partnership, participation and collaboration.

If you're a patient who thinks things could be better in health care there's no better time to try get involved personally. The door is opening up for us as patients, or as family caregivers to make a difference.


1. From Health Quality Ontario Striving For Excellence in Patient Relations Processes in Ontario's Hospitals

New Experience: Blogging With an Editor

Last month's guest post  for GeriLynn Baumblatt of Emmi Solutions was a different experience of blogging for me. Her topic for Health Literacy Month was Health Care Transitions and it took a lot of thought to find something in my health experience that qualified as a transition.

After I submitted the idea and we discussed the first draft I felt reassured by working with Geri Lynn to fine tune the post. Usually my husband and I are the only critics.

And I'm wondering, though I only have to ask, about the etiquette of being a guest blogger and whether I can post the blog here too.

Possibly not so I present the link to the post here.   The Title is "Graduating From Patient School: Health Literacy and Care Transitions" and is the story of how the naive patient I was at the before my diagnosis turned into the aware patient I am today.

The graphic she used was apt: How do we turn on the light bulb and change?

It took so many years to make that change - maybe if more information like what we access without a thought now, had been available then, the process would have been faster.

The post was part of a series about Health Literacy and covered many types of transitions. You can see the rest of the stories here.

PS to readers: I love the picture of the girl and the giant pill and am guilty of using it again this week to make a point.

Where's my Prescription Summary, Shoppers Drug Mart?

When I first saw the new Shopper's Drug Mart prescription receipt I did not understand what I was seeing. It changed to a label the size of a name tag with the backing still on it. I could peel it off but then what would I do? Maybe the idea is that I start a prescription scrapbook? 

I mentioned the difficulty I anticipated trying to save these slippery labels with 5 point type for my income taxes and my pharmacist said that I could ask for a list of the dollar value of my prescriptions every year for income tax purposes. That's a service that can help me, BUT I still need and want the listing of my last 20 prescriptions.

For me that list has been an essential tool. With it I can accurately give details of my medications to doctors. I also use it to list medications on forms at the hospital and in the Emergency Department. On Twitter yesterday some doctors said they also use those lists to go over medications with their patients, especially those who don't really know the medications they're taking.

Yet now that feature has been withdrawn with no notice, and no concern for patients, caregivers, doctors and customers.

Burden of care is added to by having no list.

When I look at the Loblaws Corporate website I see Chairman Galen Weston saying "We understand the breadth of our impact and influence." I appreciate that sentiment but wonder how many doctors and patients were consulted about this change that has a fundamental effect on my ability to manage my drugs and prescriptions.

I like the idea of the patient, family doctor and pharmacist as the basic unit for regular health management and decision making. But now, at the same time as Shoppers takes on more health services such as flu shots and Med Checks for profit, they are stepping back from the patient's needs.

My pharmacist responded to the problems I raised with:
"We all change and we expect our customers to change too." 
"You have to manage by yourself somehow." 
"Our expectation is that the patient will keep track of their medications."

Excuse me Shoppers, I am a highly literate patient and that is just one of the areas where I have challenges. Luckily at this moment I am not in a crisis but many of your clients are struggling with their health. Many of us stagger from crisis to crisis.

What about our aging population, people with low vision (Did I mention the 5 point type on the receipt?), and the more than half of Canada's population who are not health literate? 

Another statement on the Loblaw's website (Loblaw's owns Shoppers) is this:  "Our strong commitment to corporate social responsibility defines the way we do business and the role we play in society."

These statements do not match the Shopper's Drug Mart withdrawal of their useful and traditional prescription lists. 

I hope they will look for a solution to this problem which is either happening to us now, or will soon be apparent at a Drugstore near you if you are a Shopper's Drug Mart customer.

This is the top section of the form we will no longer be receiving.


Added after another visit to Shoppers: The pharmacist was able to produce a list for me on two full sheets of letter size paper that covered fewer prescriptions than the small summary of 20 that I am used to. Not convenient for me to carry and keep with me but at least I can use it for renewals. Not a solution, but as a stopgap it will help, though it required a lengthy conversation with the pharmacist before I was able to get that printout.

Change: Not the Kind You Need

More verbatim stories from the Support Group...

It's been a long time since I put my change into a wallet. Now I just drop all the change straight into my purse - If I need some I shake the purse and scoop some up. It's too heavy to carry around so I follow Julie's example:

"I take any change out of my purse and put it in a container on my dresser.  When I have a bunch of coins, I give all of them to John and he either rolls it, uses it or takes it to the bank.  I don't usually pay for much of anything."  

Polly has a tougher time.

"My hands are claw-like now except for the thumb and the forefinger. I keep forgetting I don’t have use of those fingers like I used to so I am always dropping things.

Today I was standing in line and 5 cards from my credit card pouch fell to the floor......the lady behind me picked them up.  Then another one dropped and she picked that one up for me.  Thank you!  GOOD GRIEF!  I have to remember that only my thumb and forefinger are viable.  The rest are just taking up space.

Hard to type when your hand is not straight

Julie has another issue:

"You were talking about hands and fingers.  The other day, I needed to copy a bunch of papers and went to my main big printer and it would not work!  It said there was a paper jam that we could not find. I was also trying to use the automatic feed and the paper got caught in there. I finally got it working, but black streaks were on everything and the paper came out wrinkled.

Meanwhile, I thought that I would just use the other wireless printer.  Turned it on and it was out-of-ink!  Sent John to the office supply and he brought home 5 new cartridges (that is what the wireless printer takes).  I decided that I would change the cartridges while John was gone - big mistake!  Each cartridge was completely sealed in plastic and I had a devil of a time getting the plastic off.  Then an orange plastic thing has to be turned to be taken off before installation.  By this time, I could barely move my hands/fingers.  Then, I could not get the old cartridges out as it has to be done with the bad fingers. Finally, after an hour, I was able to complete the task, but could hardly use my fingers.

I went back to the main printer and found where the black streaks were coming from and cleaned them off.  Then, still - each copied paper came out wrinkled at the top of the page.  I almost took the printer apart looking for a reason but finally just threw all of the paper in the paper tray away and put in a new load of paper.  I finally got it working without streaks or wrinkles.  My fingers/hands still have not recovered. It is such a nuisance to have such bad hands and fingers"

Polly commiserates:

Isn't it frustrating to have to jump thru hoops to get things that should be so easy?"

I know what you mean about those cartridges and then to get them out of the plastic casing.  Good gravy!!    Wow, five cartridges...that’s frustrating to fight with that.  I would be sweating after 10 mins.  It is awful to have such bad hands. Are they still sore?  What an ordeal for you.....

I need to buy a wrist brace. I wonder if I could get it on  myself?  If I can't work with the fingers I have I wonder if the brace would make it worse...more bulky. 

I don’t need more stuff to impede my 52 pick up fingers. Even just getting things on the conveyor belt is an obstacle for me. I kind of fling the items up there."

And Julie provides people with a distraction:

I wear my wrist brace a lot and people don't look at my hands/fingers much - they are looking at my wrist brace and then I tell them that I have arthritis.  Then, they start showing me osteoarthritis in their fingers and saying how much their thumb hurts - turns the attention away from me.

Kidney Week and RA

This blog starts with a patient story, just the way we are told that many hospital and heathcare meetings begin.

Julie has rheumatoid arthritis (RA) and knows about CKD (Chronic Kidney Disease) from experience.

"There are different levels of CKD depending on how well the kidneys work.  My Kidney disease is at Stage 2.  My kidneys work at 42% of what might be considered normal.  Most people's kidneys don't work as well when they age, but mine are worse.  

From etsy shop YourOrganGrinder. Buy yourself a kidney

I actually have no symptoms.  People don't usually have symptoms until the numbers get much lower.  I do have to keep my blood pressure under control and can not take several medications - like NSAID'S, Tylenol, biologics, etc.  The Vicodin that I take has a small amount of Tylenol, but my doctor said that was all right.  He sees many patients who have kidney problems from the NSAID'S - they have taken too many.  

A man who John worked with was taking Advil like candy for his osteoarthritis and went into kidney failure.  He had to go on dialysis for a period of time until they were able to get his kidneys working again.

My problems all started with a medication that I took - Vioxx  (a cox-2 NSAID).  It put me in to kidney dysfunction 6 weeks after I started it.  Vioxx is now off the market because mainly because it was affecting the Hearts of people that took it.  But - it affected my kidneys.  

After stopping the Vioxx, my kidneys returned to close to normal but apparently more kidney problems showed up later - you know how the inflammation of Rheumatoid Arthritis likes to attack internal organs.  My Internist sent me to a Nephrologist (Kidney doctor) and he has been checking my kidney levels ever since.  I have extensive renal tests every year.  So far, I have remained at a stable number."

I have had a draft of this story from Julie for a few months now but today seemed to be the perfect time to post it.

This morning the #HealthXPh tweet chat, run by doctors in the Philippines was about dialysis. You can see the blog here. This treatment for CKD is hard for anyone, with 3 dialysis sessions a week being ideal. Imagine how much more of a burden it is in a country where personal income is much lower.

A few hours after HealthXPh I saw Bernadette Keefe's (@nxtstop1 on Twitter) storify of events leading up to next week's nephrology conference celebrating Kidney Week November 3rd to 8th. 

If you're on Twitter the hashtag for the conference is #kidneywk. There are scary stories about kidneys out there - one is the urban legend about waking up in a bathtub of ice with your kidneys stolen. Kidneys are small but necessary.

Hats or Silos? You Be the Judge

The more involved I get in being active in the health area, the more "hats" I collect. When my chronic disease was my sole area of focus, my aims were clear. Now that part of my story has become the background to efforts to change the system. 

Research Role

There are opportunities now for patients to be involved in research funded by SPOR (Strategy for Patient Oriented Research), which was set up to help, enable and encourage patients to take this opportunity to add their unique viewpoints to medical research.

I'm on some research teams and doing my best to fit in, learn new skills and influence the projects through providing the patient point of view. I was asked to take an ethics course (TCPS-2) that is a requirement for researchers. It turned out to be useful that I had started the process to register with CIHR to be a volunteer board member. There's a lot to learn.

System/Quality Role

Another role is trying to become involved in decisions about the health care system. The belief that patients are the largest stakeholders in healthcare and should be involved in deliberations and decisions that affect healthcare is no longer unusual. This effort promises to be a long-term, with lots of interesting discussions about what defines "meaningful engagement." Market research techniques like surveys, focus groups and even one on one interviews with consultants make most of us think more about tokenism; not feel like partners.

Hospital/Community Role

We've seen patients on hospital Community Advisory Boards (CACs) or Patient and Family Advisory Committees (PFACs) in past years. What has changed is that now hospitals are required to have a patient and family committee or council - this means that all across Ontario there will be patient advisors involved in every hospital. This will give many more people a chance to learn and contribute with the hospital team. How much effect will this have on hospitals? We'll be watching.

Now that I am a member of a hospital CAC I am wondering how much can be accomplished in five 2 hour meetings a year?

Volunteer Role

In addition to those areas, many active patient or caregiver volunteers are working with our own disease groups to promote advances in care, working on changing the curriculum for medical students and doing the huge and often unappreciated job of family caregiver. They manage to do this despite the steep learning curve that is necessary for the care of themselves and their loved ones. As Seth Godin says, "When we confront a vocabulary that we don't understand, we can either demand that people dumb down their discourse (and fall behind) or we can learn the words."

Teacher/Student Role

The information we need to fulfill all of these roles takes a lot of work. It's scattered over the internet, given to us by other patients, and found in research. There's a problem with the research though - it looks more like patient engagement is developing as an "emerging area of expertise" (ie new silo).

Patient needs and system wants are not aligned. It would be useful if there were a course for patients, who are the only ones in the system who are (often) self educated and also volunteers. Patients could be helped with an educational pathway which would add to their professional skills and experiential knowledge and help them gain the knowledge to be part of a person-centered health care system. Then they could go beyond their personal experiences as patients or caregivers and help to improve the health system for everyone.

I'd like to see the conversation shift a little from talking about patient engagement and look at the other side - system engagement.

As a patient, being involved in all of these areas is like being able to enter numerous silos. Meetings take more energy because you need to think inside each different silo, even when the connections to other ones are obvious.  If we want to talk about overall issues for patients we'll need to start our own Whole Patient Movement or write letters to CIHR. 

All of these areas have their own goals: SPOR is funded to focus on including patients in research. Hospitals usually don't involve patients outside of their own institution and attached community and decision makers prefer to involve patients through surveys, focus groups and intermediaries such as consultants so that discussion stays in their pre-chosen framework.

At Health Quality Transform this year (2015) a separate stream was added to the long-planned program to encompass the patient advisor experience. This centered on people who are PFAC members and in a patient advisor role through hospitals. It was the only segment live streamed, which was welcome, but I was wishing to see more of the other presentations, that would enrich the whole person, not just one slice of the patient pie chart. 

Rather than seeing patients break down silos, patients are having to silo their knowledge and use appropriate pieces of it depending on the circumstances of their encounter. The patient has many silos within themselves and this just can't be healthy.

As any grain farmer knows, silos can be deadly. (thanks to Pat Rich for that insight)

The Whole Patient wears a more complex hat

Post on authentic patient voice here

Definitions and some news from the patient scene

ImpactBC was a registered Vancouver-based not-for-profit organization that provided coaching and collaboration with health care partners related to quality improvement, and public and patient engagement

When Deloitte has won the contract to provide this service, the volunteers were asked to volunteer through Deloitte. Outsourced engagement!! (Note: This contract was revoked when the patient volunteers rebelled)

Citizen engagement is the meaningful involvement of individual citizens in policy or program development. To put it simply, citizens are "engaged" when they play an active role in defining issues, considering solutions, and identifying resources or priorities for action. This "meaningful involvement" can take place at a variety of stages in the research, planning, or implementation phases of a project.

"citizen engagement is the meaningful, timely and appropriate involvement of individuals and potential support systems in policy development, program planning and implementation, research development, and health care decision making. In the context of health care, engagement can occur in the research setting, health are setting, and policy setting.Is it to inform/educate, gather information/views, discuss through a two-way dialogue; fully engage on complex issues; or partner in the implementation of solutions

Inform, consult or engage?

International Association for Public Participation (IAP2): “Public participation communicates to participants how their input affected the decision

Top Eight Everyday Problems with Arthritis

Julie is today's guest blogger with a list of things that have become difficult for her to do.

1.    Opening child-proof medication bottles

2.    Opening squeeze type bottles that you have to get               started by squeezing - like toilet cleaner

3.    Opening anything that is securely wrapped in heavy              plastic

4.    Pull-Tabs on canned products where they can not be            opened by a can opener at the top or bottom.

5.    Dragging the large garbage bags out front for the                 garbage men - John has to do this

6.    Carrying things while using my cane

7.    Lifting anything that is very heavy

8.    Dropping everything on the floor due to clumsy hands

Julie can only climb a few steps - not a entire staircase - thus I have the chair/stair lift as we are in a two-story house.  I have a container that I can set in my lap to carry things up and down while sitting in my chair.

She also purchased plastic glasses that are sturdy but easier to grip.

Here's her jar-opener that is attached under a cabinet that is a life-saver for her. It will open any size jar. 

Under Cabinet jar opener Her son and daughter-in-law gave her an electric jar opener, but it took up too much room on the kitchen counter. "I have a small stool with a cord attached to step on when getting in her SUV - John made it for me.  I first step on the lower stool and then can slide my butt into the car.  Then I pull the step stool up into the car by the cord. You wouldn't believe the people that see that and examine it so they can make one for themselves."

I have been making lists too. Here are my own top 9 difficult things of everyday life

1. opening round doorknobs

My whole medical building has these

2 turning a key in a lock

3. Cutting vegetables like little carrots in half

4. Using tiny sinks in hotel bathrooms

5. Carrying a cup of tea upstairs (or anywhere)

6. Releasing the car brake
7. Carrying things due to weight or weak hands

8. Making the bed
9. Opening water bottles

Julie and I have quite a few things in common. I feel like sawing the top off of the toilet cleaner.

Meat slicer

This would come in handy for lots of household items.

In fact I heard a story about researchers who were visiting elderly people and asking them about problems in getting the tops off of their medications. One lady who was 93 said she had no problems at all. They asked how she did it, and she took the researchers into her kitchen and proudly showed them her meat slicer.

"I just run them through this to get the tops off."

Three guesses why housecleaning items are not on our lists...

Do you have any trouble with things that most people do easily? Feel free to comment.

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. 

My Sjogren's Syndrome Onset Story

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."

Five Tips For Dealing With Chronic Disease

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 disatisfaction. 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!