The Real Rheumatoid Disease: You Mean It's Permanent?

Usually the pain and worry of rheumatoid disease (RD) is not a topic on my blog. In a change from positive strategies and ways to cope with chronic illness I'm going to talk about the worries that arise as we age with RD, based on my point of view as well as a few friends.

You can become discouraged with chronic disease. Even when you are doing everything right, enjoying life and being productive in ways that are important to you, you wake up every morning and RD is still there. That's why the groundhog is our symbol. 

Since this year's topic for RD Awareness Day on February 2 is The Real Rheumatoid Disease, here are some concerns expressed by women who have been dealing with it for a long time.

RD just never stops - it's as determined and persistent as the people who  live with it are. The day never comes when we can relax and feel on top of our health.

Polly's view

I think of Polly as my RA twin. We were diagnosed at the same age and have a lot in common. Here are some comments from her:

"Who knows when they're first diagnosed that Rheumatoid Disease (RD) is more than stiffness, an 'old persons disease' or claw-like fingers?" 

She says that people think you get RD when you're old, but it’s not always true. You get RD when you're young and you're in shock. I was upset lately when a doctor said to me "We don't see hands like yours anymore." 

A doctor told her, "Well you know you're 65 and you're going to get something..."  She told him that she's "had something" for half her life. Her plan is to switch doctors and find one less dismissive. Sometimes she gets tired of fighting it all.

Julie is a bit older

Julie says try being in your 70's!! She always has good advice, and is pleased that most of her doctors haven't given up on her and keep trying to help.

She feels that her long-time Internist is the most apprehensive at the same time as she appreciates his help. He's the person who has seen her going down-hill and sees all the records from other physicians.

I like her definition of old:
"I don't consider people in their 60's elderly. 
I have read that 65 to 75 is "Young" old
75 to 85 is "Old"
and 85+ is "Very" old."

She agrees with Polly that other diseases or conditions piggyback on the inflammation of the RA or the medications that we have taken.

Polly

Polly thinks we're not rewarding to our doctors anymore because as RD damage and effects start to pile up there isn’t much that can be done.  
  

Ally has complications

Ally worries about the healthcare system making life harder for those who have chronic or terminal illnesses. (She's making a statement here about COPD and Emphysema.) 

"It is just the opposite of good medicine for the patient, to increase stress, discomfort. Waiting for test results that take forever to be processed is not good medicine. They live out of a book and we live out of our bodies." 

She also sympathizes with doctors who have protocols on how many patients they must see in a day. She thinks that their constant running does not equate to good medicine

Jane

I just had my first lung scan.

"It's terrible when the doc is aware of a problem like crackles in your lungs but doesn't tell you !!! I am so tired of fighting for things now. I really feel like just giving in."

Back to me

We're no longer young and when we were diagnosed either the treatments were less effective or we could not tolerate them. It's good news that treatments are so much better, but there are still people around who can look back at "the old days" and who are worried about aging with RD. That's a topic where you don't see enough research. Clinical trials are notorious  for not including people over the age of 65, and also excluding those who have more than one health problem.

With the emphasis now on evidence based medicine that exclusion of the older age group is bound to create some doubts about the best treatment in the future.

In fact there have been studies showing that RD is treated less aggressively in older patients.

Bad as they may be, my bones are better than his bones

Custom apparel by Cathy Beattie

This post is part of a blog carnival with RAWarrior, Kelly Young. There are 13 contributors.

The Twitter hashtag for RD Awareness Day is #TheRealRD

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."

Not My Jaw Joint Too!

It's possible for rheumatoid arthritis disease to affect your jaw joint (the TMJ or temporo-mandibular joint). It shows up late; long after the RA starts, in the same way RA affects the cervical spine. 

The TMJ is that joint where your jaw is attached to the upper part of your skull

When I asked my GP doctor about the problem years ago he said there were three courses of action. One was just leave it alone, the second involved taking anti-inflammatories, and the third and worst to me was an injection into the joint. I assume that would have been a cortisone injection. It was a horrifying thought then so I took the "leave it alone" route.

Twelve months ago and a generation later I saw a rheumatology Fellow. He asked about the asymmetry of my face. (News to me!) He and the rheumatologist conferred and sent me for a CT scan. A few weeks later I got a bad news call from my specialist - actually the first call ever. He said that my jaw joint has severe degeneration on one side and moderate degeneration on the other.

So what do you do with that kind of news? I started with my dentist. He gave me a referral to an expert dental surgeon. It practically goes without saying that this surgeon has a waiting list. They told me it would take eight months, but actually by the time I see him a year will have passed.

In the meantime I saw another dentist who used to be a surgeon. He said that my function is better than he would have thought from the scan. Since the jaw joint deteriorates slowly over the years it can adjust to gradual changes and using a night guard for protection would likely be helpful. He also advised me not to eat apples or other large fruits or big sandwiches on hard crusty buns. 

Can't eat this apple no matter what happens

Two RA friends with jaw trouble have had special physiotherapy. Tense muscles contributed to their problems and now they can at least open their mouths wider. Another friend with pain issues was seen recently in group therapy at a pain clinic. Half of the people in her group had jaw problems, so it's a piece of luck that so far I don't see that happening.

My jaw does cause problems. The worst happen after a day in meetings or at a conference. All of that extra stress and extra smiling makes my jaw sore enough to cause pain and headaches. 

You'd think smiling would not put you in the penalty box

TMJ Disorders - NIH

Merck Manuals TMJ

Can orthodontic relapse be blamed on the temporomandibular joint?  Gives some background

Babying My Feet/Baby Steps

You start off as a baby with perfect little feet and take it for granted that they will be there for you all of your life.

NewBabyNewLife.com

But illness, badly fitting shoes or accidents can make walking difficult for you.  Since my feet have been affected by RA I often find myself sitting and watching people walk by.  It is surprising  how many times you see others with problems.

Today I read a study about a foot evaluation questionnaire called SAFE-Q.  The evaluation form itself is in Appendix 1 of the paper.  If you look at it thinking about your own feet you get a very comprehensive view of the problem areas.

This week I was a volunteer patient for a class of physiotherapists and one of the questions asked concerned the ways which my life had been affected by having chronic illness.   I had to say that I had lived with it for so long that I could not really imagine a different life.  The teacher told the class that this was a common response, and one way to illuminate this issue is to ask the patient this question.  "What do people your age do that you can't"?

That's an easy question to answer.  My peers without health problems walk a lot, garden and have more extensive real life social networks.  That's the reason that the foot assessment questionnaire made such an impression.  It itemized all of the different parts of life that are restricted by foot problems.  

                                  Back2Feet.com owns this foot

I think what has bothered me most is being unable to participate "normally" at parties, get togethers and business meetings. When your feet hurt you are the one sitting in the corner or next to the food. Between that and having to wear "sensible shoes" you have a world of social awkwardness.

My friend Julie says this:

"The part of my body that I notice changes day-to-day are my feet.  One day, they are fairly good, the next day - swollen, burning and more painful.  It might have to do with what I did the day before.  We always pay for our over-doing don't we?"

I agree with Julie. The burning feet in particular are hard to work around.  

Rheumatoid disease is notorious for the way it affects the feet.  There are all kinds of strategies to make them comfortable - extra padding, special shoes, wrapping up my toes.  None of them worked perfectly though orthotics have helped me the most  day to day.  The other option which can be used is surgery which can wait for another day. 

                                     This orthotics doesn't fit

                                                           Globalanimal.org

His orthotic fits

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