World Autoimmune Arthritis Day WAAD - Start Talking

If you look at the funding for autoimmune diseases you see that the money allocated is unequal to the impact this group of diseases has on health and healthcare spending.  This may be due to a lack of awareness on the part of the public and the medical establishment, and also to the weak voice of those who deal these illnesses. Part of the problem is also that getting a diagnosis takes years for many of us because the tests are inconclusive.

To use statistics from the US as an example there are 50 million people with autoimmune disease and 11 million with cancer in the population.  Autoimmune disease is the poor cousin in this equation.  Cancer is estimated to be receiving $7762 million this year (2013) compared to $872 million for autoimmune disorders.   

So the number of cancer diagnoses is equivalent to 20% of autoimmune diagnoses and yet autoimmune disease gets only 11% as much money as cancer gets for research. 

  Comparison of incidence and research funding   

Cancers and Autoimmune Diseases

Musculoskeletal (MSK) disease is highly prevalent and affects 1 in every 2 people in the US.  Despite this it receives only 2% of the National Institutes of Health (NIH) budget.  Some of the autoimmune diseases included in the MSK category are rheumatoid arthritis,ankylosing spondylitis, psoriatic arthritis and juvenile arthritis.

If this looks like a problem in the US imagine how difficult the problem is in countries where there are fewer resources available in healthcare and by some reports I have read, the same incidence.

For these reasons WAAD (World Autoimmune and Arthritis Day) sounds like a great idea to me.  It's a chance for people and groups with an interest in or a shared diagnosis of autoimmune arthritis from all around the world to get together and communicate online in the chat sessions or the informal chat of the lounge.  There is also a great opportunity for all of us to learn from the downloadable presentations,information sessions and blogs.

I'm hoping that we can all take information from this virtual convention and use it to spread awareness among our friends and also in the medical profession.  It would be great if our efforts to do this would spread like dandelion seeds around the world.

                        Dandelion (El Alamein) Fountain, Sydney, Australia

If you want to participate this is what you do.  Go to the site http://worldautoimmunearthritisday.org/expo/. Once you are there scroll down to sign up at the lower left. Questions will be appreciated.

Another issue around awareness and funding may be that  75% of the people with autoimmune arthritis are women who often do not 'look sick' . The variety of autoimmune diseases also works against us, but we will be stronger when we can speak with one voice.  

So let's start talking!!

Having a virtual global convention that lasts for a full 24 hours in every part of the world is a good step towards uniting our many voices.

Patient Partners In Arthritis

There's an ongoing discussion among patients about the education of doctors.  Considering how many people see doctors for musculoskeletal (MSK) problems, and how frequently these visits occur, I think it gets relatively little time in medical school.  Certainly when it comes to awareness of Inflammatory Arthritis there's a long way to go to raise the knowledge level of everyone out there.

To help improve awareness of various types of arthritis among medical professionals there has been a  nonprofit program called Patient Partners in Arthritis used in Canada for the last 17 years.

The patients who volunteer must have a confirmed diagnosis of arthritis and feel comfortable talking about their disease and interacting with all levels of health care providers. They complete an in-depth training program that prepares them to demonstrate joint examinations and provide a real life medical history that illustrates the problems and issues that arise with both osteoarthritis and inflammatory arthritis.  That covers a lot of ground.

                         Patient Partner member ready to participate

Everyone knows the value of a good story. You see stories everywhere from commercials to mystery novels. They add interest to dry facts (and bones). 

                                            Bones of the hand (Toronto Western Hospital)

I joined Patient Partners and I think that right now I am the newest member.  I have learned a huge amount from the training and from the rheumatologists who are present and contribute to some of the Patient Partner sessions.

Currently the program is used in 10 Canadian universities as part of the MSK education of medical students, residents & other health care providers like nurses, occupational therapists and physiotherapists.

"The program is based on the principle that arthritis is a chronic condition and people living with it are often the most knowledgeable about many aspects of the disease." (from The Arthritis Society website)

It has helped me to gain confidence about my knowledge of anatomy and most days I participate I learn new facts.

The Patient Partners training is led by the same person to provide consistency and reviews are done regularly to maintain standardization. 

In a typical session Students learn joint examination techniques and are able to see and feel the joints of patients with a variety of MSK problems. The students realize the impact of arthritis better with a personal story along with the feel and look of damaged joints and restricted movement.  Feedback from students indicate that it is a better learning tool than pictures or a didactic lecture.

The last time I saw my orthopedic surgeon, the Fellow who was working with him had encountered the program in the Maritimes several years previously when he was a student . He remembered the session well.
.
One way used to demonstrate the feel of an inflamed joint is through the use of chocolate covered almonds and grapes.  No surprise to my fellow patients to hear that it's the squishy grape that feels like an inflamed joint.

Grapes from ThirdAge.com                

This is a successful 'hands on' Canadian program which I wanted to spotlight.

Peer To Peer Mentoring

When I joined the research study for "Peer to Peer Mentoring For Individuals With Early Inflammatory Arthritis" I expected to be sharing information with others who had a new diagnosis of inflammatory arthritis. I did not count on learning so much myself.

This program appealed to me greatly.  When I was first diagnosed with RA (rheumatoid arthritis) I would have appreciated meeting someone who could give me tips and a viewpoint about RA based on life experience.  What I wished for was a friend who could help me.

Upon diagnosis I knew very little and had no support. My doctor at the time was a good source of information but interactions with him were limited.  It was lucky for me that I was admitted to hospital when I was diagnosed to start aggressive therapy. There I met a support team of professionals.  Since this was before easy access to the internet they and my doctor were the only help I had.

                                 

                                      Rheumatology waiting room (Sunnybrook HSC)

After 10 years with RA I finally began educating myself about my health problems and the health system.  When I volunteered to join the Peer Mentor program one prerequisite for participation was taking the Arthritis Self Management Program through The Arthritis Society. Though it seemed like a formality at first I learned from the program and from the other patients.

Of course for a research study the knowledge level among the mentors had to be consistent so all participants were in for some serious training. When the training started I was presented with a five pound binder full of resources and information and participated in amazingly good instruction with the other mentors and the research team.

                                                         My 5 pound binder

The program was terrific for me.  I gained a lot of confidence in my ability to help someone with Early Inflammatory Arthritis without being too overwhelmed. Another great piece of learning was to stop and listen more. If you talk too much you never hear anything.  In fact what I learned about goal setting was a big help to me in my working life as well.
The other mentors who I met in the program had such a diversity of strengths. Everyone contributed to the learning process.

Here is a brief overview from The Arthritis Society site:

http://www.arthritis.ca/research/summary/PeertoPeer  Peer to Peer Mentoring for Individuals with Early Inflammatory Arthritis (EIA)


And here are the papers published by Dr. Mary Bell and the team:

http://www.pec-journal.com/article/S0738-3991(13)00053-0/abstract

The experience and impact of chronic disease peer support interventions: A qualitative synthesis

Peer To Peer Mentoring: Facilitating Individuals with Early Inflammatory Arthritisto Manage Their Arthritis – Exploring Learning and Support Needs

http://bmjopen.bmj.com/content/3/3/e002267.full.pdf+html 

Peer-to-peer mentoring for individuals with EIA: feasibility pilot

The Whole Blog in a Wordle

The idea of doing a wordle and having the whole blog encapsulated in one image was exciting. 

It's something I have never done and since this is a week of new things here's my wordle.  You can read the whole blog in one easy picture.

It's an inspiration from the #HAWMC blog challenge.  Looking in from outside the participants seem to be having a lot of fun.

RA Inventory

I went back and looked for my First Blog Post. It was April 4th last year so my first blog anniversary passed without notice.  There was cake in the house though so that should count as a celebration.

                                    Happy Blogday To Me!

As I sit here and take an early inventory of my joints this morning my neck has news for me.  It is fed up with holding my head up all day every day and wants a day off.  It hurts to turn my head and the nerves in my scalp are prickling. In fact the pain is camouflaging a headache or else the pain gave it to me. 

                                          www.npr.org

Then there are those other major muscles - the sit down ones are stiff and sore.  They don't want to work today either, and my fingers would rather not bend.  Knuckles hurt and no video games today says the wrist (and the rheumatologist) --  in fact these hands won't let me spell right either on the first attempt. 

Feet are saying what did you do yesterday? We never agreed to that

Even the shoulders - "What! you want to type? Not us, not us"

Is it Chicken Little?

                                      No I can't help you
or Struwwelpeter?

                                        Shock Headed Peter

Either one is bad news.

And a knee is stabbing me.

I used to use a body inventory to help me relax.  It's a technique like progressive relaxation though I altered it to make it more fun (easier) for me.

I'd start with the toes and concentrate on them for aches and pains, even make up nonsense verses for each area as I assessed the pain or lack of pain from the toes up. As I went on to another area I would tell the one I was leaving to relax.  Though this sounds very simplistic I rarely managed to get past my waist before falling asleep

Some days that's the best alternative - a good rest.

                                          A good rester

RA Stories from Real Life

My online friends have some good stories about RA. Here are two of my favourites plus a fun story of a funny evening .

From the ever popular Julie.  "I am sure that we all have "naughty hands" stories.  One of my worst was this.  We were vacationing in Washington, D.C. and went to a nice restaurant.  I always carry my medications in those 7 day containers that have pop-up lids.  I had mine in my purse and had secured it with a big rubber band just to make sure that the tops didn't come open.

I got the container out of my purse and went to take the rubber band off.  Well - instead, when I went to take the rubber band off, I used the entire thing like a sling-shot.  The container flew across the room, hit a server, the tops opened up and the pills went everywhere.  Jon really liked that!  He and I were down on the floor picking up pills.  Once again, I started laughing."

                                    www2.ipswichhospital.net

Nina said   "One day I was at my rheumy appointment, waiting in the waiting room and we were sat there wondering why there were so many very young couples waiting. We thought we were maybe in the wrong place, till Mark realized that the rheumy waiting room was also the STD clinic waiting room!! "

And on a day like today give some thought to Rosie who is dressing up for a Spelling Bee.  It sounds like so much fun!

                                        www.giles-lea.giles.k12.tn.ua

"The costume consists of yellow tee shirts that my neighbor had made while she was in Florida.  It has a circle on it in black with a honey bee in it.  It says Spelling Bee's on it.  We have these head bands with fuzzy things that stick up like a bee's feelers.  She also has yellow nail polish.  We all agreed to wear black pants.  Everyone is supposed to wear something I guess.  I think they have a prize for the best costume too.  I'm not looking forward to it."  And that's not counting  the yellow green and black striped socks our team will be wearing.

Breaking News: They won for best costume and spelled  very well.

RA Circus - #ChronicLife

In reading a blog yesterday someone was laughing out loud about the Elephant on the Trampoline as an antidote to gloom. Humor is a great way to get temporary relief from almost everything undesirable.

The elephant made me think of the circus of course and those vintage posters I love to look at.  It also makes me think  of this successful strategy that got me through years of gloom after my diagnosis with more optimism and some unexpected bright spots that helped me through some tough years.

I would also say that (insert your disease here) is the "elephant in the room' for many of us. It takes up so much space in our lives that we would rather use another way. 

Getting a diagnosis of inflammatory arthritis is a bit like being shot from a cannon - it's scary and a huge shock coming out of the 

cannon and you can't be sure how the landing will go for you.  The diagnosis may be only the beginning of a different and more difficult phase of your life. Hopefully you will be one of the people who can achieve remission fairly fast.  To do this you need to see a rheumatologist soon after your symptoms appear and ideally you will respond well to medication. This now happens far more frequently than when I was diagnosed decades ago.

People talking about your illness may say "Look at that brave girl and her amazing exploits dealing with a serious illness" (at the best) but it's a lot like trying to tame a wild beast and you never know when it will turn on you.  It's important to keep practicing the measures that keep it under control for you. You can't turn your back on an opponent like this. 

Keep your eyes on the tigers.

As Dr Keystone said in  a lecture a few years ago "RA is a medical emergency" That statement is a call to action. (I will comment that  the lecture was inspiring)

One thing we all do with RA is juggle.  Medical appointments, doctors, family, fatigue, pain, work and worry about the future. That's a serious amount of stress to deal with.  I would like to cultivate a teflon personality so that none of the stress  would stick to me. The flip side would be the velcro personality which sounds like bad idea.

In this article about the brain though there is a statement that the brain is velcro for negative experiences - they stick and good memories are easily forgotten, so we need to work harder to overcome the negative and make more good memories. Some ways to do this are through positive emotions and cultivating the "relaxation response", which includes humor as Kelly Young aka RAWarrior says,.   Auntie Stress has a good post about kindness as another way to lower stress. 

Since this is a circus it's no surprise to see the next act involve great skill and agility. RA is a balancing act and with the feet I have now that is literally true.  I walk very carefully and try to do balance exercise.

With any chronic illness you need to enjoy yourself at least some of the time.  I once had a talk with a social worker from The Arthritis Society and an important piece of advice she gave me was "Have more fun".  Working, housework, social obligations all go better with fun.  My friend finds Doris Day movies enjoyable and she's a Dallas Cowboys fan too.

Over the years so many people in the know, like physios and moderators in Arthritis Self Management courses have suggested that exercise in a warm pool would benefit me.  I believe it but the energy expenditure equation keeps me from doing it.  By energy equation I mean this. The time to put on my bathing suit, dress, drive to the pool, park, undress and shower and then to do all that over again in reverse just does not seem to be worth the effort for only 1/2 hour of exercise.  Maybe if it were this much fun I would do it.

Water Circus

Madame Yucca looks like an amazing woman. I'll never be that strong but I do try to maintain strength by just doing simple isometric (muscle tightening exercise) and I have been doing Arthro-Pilates for years now with Lori Weisbrod (Toronto).  I love exercise that you can do lying down.

The topic of today's blog carnival is how to keep disease from taking over more of your life.  I can see that as a necessity but at this point for me the RA is well integrated and I no longer think of life without it because it is the house guest you can't get rid of.  

Once you have damaged joints, even if the other symptoms are controlled, the mechanical effects of the damage will continue.

When I was working my job was so interesting that I was not thinking much about pain for large periods of time. I used work to keep the RA from taking over even though I had to adapt.  Now that I have retired I find blogging is an enjoyable occupation. Creative outlets are good for the soul, no matter what you produce, from books to baby clothes to beautiful pictures. I totally forgot the RA when I was looking for these circus posters.

This blog post is part of a carnival. Please visit all the posts in the carnival. Here's the topic and a link.

How Do You Keep the Disease from Taking Over?

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