If You Consulted My Rheumatologist This Is What Might Happen

This is a description of what occurs during a typical visit to my rheumatologist, in case anyone wants to compare. At the initial visits there was more detail than described here, but after years of seeing him there's a comfortable pattern.

Company while I wait for the doctor

At each visit, in addition to normal conversation, the Dr checks on my medications and asks if there are problems connected with them. Then he asks whether any new issues have come up since the last visit, good or bad.

In front of him are the forms I filled out in the waiting room. That gives him my assessment of pain and disease activity, and he sees how I rate my quality of life (HAQ) and ability to accomplish certain activities.

Then he checks for tender and swollen joints in my hands - the knuckles and the PIPs (Proximal Interphalangeal joints) - using the four fingered method of assessment. He marks this down on the homunculus he has stamped on his sheet of appointment notes. There's a space to record the total number of swollen and tender joints. I think he records morning stiffness as well. It is always asked. He doesn't bother with the finger joint closest to your fingernail. Most rheumatologists say swelling there is not RA.

Homunculus drawn by me

On many visits he checks on the range of motion in my elbows and shoulders. It's no use any longer to check the range of the wrists since mine are damaged and both are now fused.

The next step is getting up on the examination table. He checks my blood pressure and listens to my breathing with a stethoscope, front and back. Once I lie down on some visits he palpates my abdomen to determine if the liver is enlarged. At this point he checks lymph nodes too.

Next it's the lower body - internal and external rotation of hips and whether I can raise my legs, and a quick look at the knees and ankles.

Musculoskeletal exam

After this I sit down again and we discuss what happens next. I had a look at the chart and there's a space the doctor to record his impressions also. 

Then comes the plan. I complained once on Twitter that plans were often not communicated - that may be true for the long term, but short term I leave knowing what should happen over the coming six months and with a new appointment date, bloodwork requisitions and any prescriptions needed.

Every year or two, if my ankle is painful he will give me a cortisone injection in that joint. For other joints I have very infrequently had ultrasound guided injections that needed to be scheduled through the hospital.

Sometimes he has a resident or fellow with him. This slows the process down but is often interesting. The last time I saw one he noticed something new, so even though it is sometimes repetitious for the patient it can be worthwhile. 

Though he covers a lot he is able to do it efficiently and carry on a conversation at the same time. It's very satisfying to hear expert opinions and to discuss health issues. 

Even though I have had arthritis for so long I approach my appointments with hope and expectation. There is always the hope in my mind that a new idea or strategy might change my life  for the better. It's not likely, and yet there are actions that can help you do well with chronic disease that are not medical. 

As I have learned more about my health and my disease I am able to have much more in-depth conversations with my doctors. Learning more is always a good idea.

Your Last List

Anyone can make long lists of things they don't want to do. On the top of mine you'd find colonoscopies, but after participating in #EOL chats with @DrBeckerSchutte over the past year and the #HCLDR chat from November 26th it's evident that making my wishes for the end of life known is what really stands at the top of the list.

Obviously this is not my stone but it was a surprise and a warning note to see it.

Having worked in a bank for years when I was young I am well versed in starting a conversation about wills and executors. The main reason that resonates with people is that if you don't make your own choices about your money and possessions in a will, the government will step in and take care of it for you. That's not a popular choice.

As for executors, that too can be a delicate problem that can tear families apart.  And yet people take far more care planning the financial issues than they do with their lives.

The quality of life you have at the end of it depends on choices that are made, and who knows better what you want than you yourself. 

My dad set a great example of planning. He made sure that he had done a Power of Attorney for both financial and health decisions for himself and my mom, as well as a will. He also planned his funeral and hers in as much detail as made sense. This was a huge relief when they did die. We could concentrate on family, not the business of funerals.

It was wise of him to do this early. No one could have foreseen my mom's stroke, and her long survival after my dad died.

So this is a call to people who read this to start having discussions about the end of life. 

It will happen to us all.  Studies show 80% prefer to die at home and yet 60% die in a hospital and only 20% die at home.  The figures for survival after CPR are dismal in the elderly - it's really meant for young healthy people.  If you have not chosen to "Allow Natural Death" (AND) or "Do Not Resuscitate" (DNR) you will get the full 'benefits' of modern medical technology even when you would die shortly no matter what is done.

More interesting reading.

How Do Physicians and Non-Physicians Want to Die?

The Other Talk - About talking to adult children about the way you want to live the rest of your life.

The information above is very influenced by the Tweetchats I mentioned, especially a tweet by @ChadCampbell119 when he said "I think including #EOL in basic education like we do with mammograms, colonoscopies etc. Preventative is better. Don't wait till too late."

He also Tweeted this link that discusses what to do with a loved one's online accounts after death. It's very relevant to those with a rich virtual presence.

See the One Slide Project and HealthBlawg for ideas about the questions you should be asking yourself and your loved ones. I jumped into this post with enthusiasm, not really absorbing the years-long tradition of the "Engage With Grace" Project each Thanksgiving. The answers to the "One Slide" will take you a long way towards a decision.

Prevacid and the Perils of Pauline

This is what is happening to my friend Pauline in the US, in her own words. That makes it the first guest post!

AHHH...the insurance debacle.

I got a  call today from the CareSource guy who manages my case and he said they denied the Prevacid again.  Well, I lost it, for me anyway, then felt guilty afterwards. 

Why did they deny it?  Did they get the doctors letter?  Did they read it?

Step Program from woodworkingdownunder.com/freedollhouseplans

The reasons they state for not approving Prevacid are that the generic is the same drug as the brand name and a step program of trying other drugs is needed. Now I am on the 90 day trial of the 2nd manufacturer, but it upset my stomach on day one, so am not taking anything for my acid reflux. I'm just sitting till my waiting period has expired and so I am wasting money by not taking the same medication that I tried in 2007 when it did not work.

This is what I need to do again:
I need to use drugs from two different generic manufacturers again.
The Doctor needs to send the chart and history (he has done that).
He has written a letter. All the things they need, we've done.  I asked, doesn't Caresource read anything?  They're sending me the same denial letter over and over again!  The two other med manufacturers are Dr Ruddy and Sandcrest.  Does the insurance company read anything or do they just deny and put everyone off?  I think they don't care about the people - just about making money.  This will be my third letter stating the same reasons!

Sometimes it's like a merry-go-round

The rep said well, I wouldn't say they just worry about the cost not the people.  I said "Well, what does this look like?  I don't mean to take it out on you but this has been ongoing for about 9 months or more. I'm not taking any acid reflux meds and probably developing ulcers because of the stress".   

They just want us to give up on getting this med and I'm sure the majority of patients do.  And if the generic made me feel okay, I'd take it but....my tummy says no way.
 

My CareSource Navigator said that if I get this approved, make sure that the Dr pre authorizes it..because prevacid and nexium are the two hardest to get.  They're the most expensive. 

The pulmonologist said we (patients) should all rally against this.  How do you do that?  There's so much to rally against...what do you start with?  Doctors that drop you, meds they prescribe for you that are denied, moving your scheduled appointments to another later date, going to only the poorer hospital, switching your generic meds constantly...with different manufacturers?  Is that safe? 

Not a drug rally. This was environmental

So, what do I do now?  He said to call the doctor's office: they got a copy of this denial letter and have them call the Peer to Peer group in the CVS Pharmacy.  HMMMM..can I call the Peer to Peer group myself?  Nope.  Lucky for them.  He said they aren't even allowed to call them anymore.  Sherry at Dr X's office has to call so I called and left her a message.  No hurry..wonder when she will start blocking my caller id.  LOL 

I feel bad being kind of nasty with the rep but it rubbed me the wrong way.  Even Dr X said,  this letter is all we can do..the last step.  I hope it works. Anyone need some nails cause I've been spitting them out since 10 am? 

I think (KNOW) now that I am fighting for principle.  I could easily change to something else but I know prevacid doesn't upset the stomach like the others...so why try number 3, 4 and 5? 

Really, I thought..according to the insurance and medical companies, that the generics are all made the same as the name brand.  So???

Generic is not the same .. I don't care what they say. Its a nightmare here to get your name brand meds.  I don't think the generics are made to match the name brand. For sure the fillers and delivery system may be different and probably made in factories with poorer quality control. Look at the Ranbaxy settlement for one example of substandard drugs.

It's stupid.  My care source navigator told me that she tells her patients if they get do get approval on nexium or prevacid...never let it drop cause it's like gold.  What a waste of time, paperwork, medication and my health. My husband used to call this "thinning the herd".

I have 2 friends who have had success on this name brand drug and no luck with the generics. I wonder if they are the only ones? It's too bad that so many with RA need to take additional drugs to protect their stomachs from damage by NSAIDS.

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.