Better Results With Team Treatment

When I was first diagnosed with RA I was lucky to be presented with a first class care team.  That happened in 1982 when starting a a stronger and more effective drug with worrisome side effects was far less common than now.  These days, when specialist doctors are so busy, you usually have to find the other team members on your own.

In the 80's many doctors still used the old treatment pyramid.

                                       Encyclopedia Britannica

The bottom step of the pyramid (behind the camels) consisted of Aspirin and you had to go through all of the less useful drugs to get to the top and graduate to an immune suppressant drug or DMARD like gold or methotrexate.  This meant that by the time you were prescribed an effective drug, you already had joint damage. This approach is now obsolete.

Now with (ideal situation) early aggressive treatment most of the people I see in rheumatology clinic waiting rooms look quite healthy.

                                       thecanadianencyclopedia.com

Maybe not as healthy as the Canadian women's winning hockey team shown above but now, when I am at a rheumatology appointment I look around and wonder if the people I see are patients or healthy friends who are waiting for patients.

Back to the First Class Care Team

In 1982 when you started on a "dangerous" drug for a serious illness like RA you were often admitted  to a hospital, as much for the education as for the monitoring, and that is where I met the team of health care professionals who have done so much to keep me going, even as they changed over the years. Future posts will go into more detail on the various types of help I received.

The physiotherapist stressed exercise and also introduced me to paraffin wax baths for the hands. She acted like a cheerleader some of the time and helped with hope and optimism.  The occupational therapist told me about resting splints and wrist braces to help with the pain, and introduced me to devices for help turning keys and knobs and opening doors, and also for help in the kitchen.  

A right angled knife is my #1 kitchen device

The pharmacist talked to me about the new drug regimen and precautions to take. I was sent to a foot clinic where I got orthotics to help with my sore feet.  Without orthotics I limp, so I always wear shoes. I met a social worker for advice on how to proceed with work and life.   

Later I realized that a nutritionist would be a big help also and she solved a problem that I had even before I developed RA.

                                               indulgy.com
It's wise to find an excellent dentist and a dental hygienist you can trust. Having a long term consistent relationship means they will spot changes you might not be aware of, and they'll spot signs of Sjogren's Syndrome early. In fact there is a suspected link between rheumatoid arthritis and periodontal disease.


You're the one who owns the chronic illness, so you'll want to be on the lookout for good professionals to help you deal with it.  If that is not affordable there are websites where you can get specific advice and tips that are general.  I'd suggest using the advice and tips you can get from the self management courses to find resources. The official sites of the organizations that deal with problems you have are also learning areas. I'm thinking of The Arthritis Society ,the National Institute of Health ,the Sjogren's Syndrome Foundation and the Sjogrens Society of Canada to name only a few possibilities.

They're not all like Dr. Kildare

Of course your doctor will have a starring role on the team and may have good suggestions for other health professionals and resources that will be useful to you.  You can't just leave it all in his hands though - you need to be as proactive as you can manage to be and work on educating yourself about your health.
                               
You have to be the captain (or co-captain) of the team and also assemble them, with help and advice. It's great to count some family and friends as team members, but watch out for the negative ones, or those who say you should just get out more to feel better. 

I would also like to mention the support of online groups and forums as well as Twitter as a potential big help. If you pick the right support group you may make friends for life, and they know exactly what you're talking about when you are having trouble dealing with symptoms.

                            Friends hanging out near the hospital

Do It Yourself Management of Chronic Disease

We can't manage our chronic disease by ourselves, unless we quickly graduate from medical school and then become specialists.  That's not too likely with a new diagnosis that has an impact on your health.  

                                                 etsy NostalgicLinks


However, to take a guess, even average people don't see doctors much more than two hours over a year.  And that may be a high estimate.  But even if you spent a whole 24 hours out of your year seeing doctors and other health care professionals, that leaves you with the other 364 days to take care of yourself.

There is one thing I have learned on Twitter.  That is that health literacy is the greatest predictor of health. In this context literacy means Grade 8 or better education.  I would go further and say that with a chronic disease you need to be able to do even more - you need to learn the medical vocabulary of your disease so that the appointments you have with doctors are as effective as possible.  Many of us have likely had the experience of having to wait for the next appointment to decide on a course of action because we needed time to educate ourselves on the choices offered.

                                                                   TheDecisionTree.com

I have used some formal resources to enable me to manage my RA better.  The first thing I did was take a course called The Arthritis Self Management course (ASMP) offered by The Arthritis Society in Canada.  It took 3 hours a week for 4 weeks and I ended up feeling more confident that some things I was doing were right and in some areas I could do better.  The area that needed most improvement for me had to do with setting achievable goals.

                                               

The program that the Arthritis Society offers is based on the Stanford Chronic Disease Self Management Program  I was lucky enough to participate in this program also, as an online course.  Talking to others with problems of their own and finding solutions as part of a group is very helpful.  I found out today that you can take that course free by signing up online for Better Choices,Better Health 

In fact much of the experience in these courses can be recreated on Twitter in terms of support, but not with the discipline and the fixed agenda of these workshops.  They give you a tool kit to help you progress.

At one course I heard the story of elderly lady who had very little mobility.  She built up her stamina by walking around her dining room table and increasing the number of circuits every day. Small steps to success can make a huge difference.

   

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

RA and Osteoporosis: "I Leave That To The Bone Docs"

The title is a quote from my rheumatologist when I asked him about the choice of medications for osteoporosis.  He wasn't ignoring the problem, just referring me on to another specialist for the osteoporosis, which is not part of his expertise.

       

                                                                                                 

I found this humerus

Here's the history: After 20 years with Rheumatoid Arthritis (RA) my GP sent me for a DEXA scan. It was used as the baseline and showed I was well below normal bone density. My GP doctor told me to take calcium supplements and we'd see what happened. Over the next three years even with calcium, vitamin D, and hormones it just kept dropping.  In that period I even  exercised!  When I went to the osteoporosis clinic they reviewed my diet for natural sources of calcium, kept me on the HRT, and upped the calcium and Vitamin D.

The picture is from a blog: http://www.kksphotos.com/blog/ which has a great series of posts on Bones and Hormones from an Osteoporosis Educator. You can see what bone density means by comparing the two views.
                                                                    
When I went back a year later my bone density had plummeted to the level of actual osteoporosis, not just osteopenia.  At that point they prescribed a bisphosphonate - Fosavance.  I took it weekly for the next four years and every year the density improved.

When they decided that the time had come to stop the prescription I protested because I was afraid that it would drop again.  The doctor said adamantly that they don't treat bone density now: They treat falls risk. One year and one scan after stopping the bone density drug, my density has gone up yet again and is a little better than normal for my age and better than the baseline.

                                       Don't take it from her. Smoking is bad for your bones.

That improved score leaves me wondering.  I have read that osteoporosis is systemic, so if the bone density goes up does that mean I no longer have that condition?  I will be looking for that answer.

It is also worth noting that during the last 5 years with the improvement I have been taking a biologic drug and also have stopped drinking soft drinks.  Maybe that also helped a little.

Later comment: 
What I did not even touch in this post was the anger I felt that I had not been informed by healthcare professionals during my first 20 years with RA was that on its own RA is a risk factor for osteoporosis. The basic advice should have been to take calcium and vitamin D and try to exercise even though fatigue and pain made it difficult. I know doctors are busy but this is something that should be covered in a rudimentary hand out for patients with musculoskeletal health problems.






                                              
                                                  

Help Your Bones - Types of Exercise

If you you are planning to exercise to improve your bone density and strength, avoiding the movements that may harm your spine is important. You want to solve a problem, not create a new one. Pool exercises are good for keeping you limber and extending your range of motion and endurance, but for strong bones You need to supplement swimming with activity that will increase your strength.

                                         Publicis Dumocalcin Campaign

We need to work on making our muscles and core stronger. If Rheumatoid Disease has affected your hands and feet, and walking or  lifting is more difficult it's good to know that working on your core strength is still possible, as long as the fatigue is not a barrier. 

When I started to exercise I felt like my muscles consisted of limp spaghetti the day after.  Thank goodness for timely biologics that let me do more. Starting slow and building up strength gradually also helped.

                                                                  scomotle.org
                                                                                                   Muscles Like Spaghetti


Pilates sounded like a good match for what I wanted to achieve and I found a story in Chatelaine magazine about Lori Weisbrod, who teaches Arthro-Pilates in Toronto  http://www.arthro-pilates.com/  Since she has autoimmune arthritis herself she knows about the pain and issues arising from damaged joints and fatigue.  I've been working on improving strength with her for 4 years through good times and less good times with my body resulting in more strength and muscle.

                                        Lori Weisbrod ArthroPilates

I have also read a lot on the TheraPilates website.  Sherri Betz is a well known speaker and teacher in the area of Pilates and osteoporosis and she has a great collection of articles on her website http://www.therapilates.com/PDF/modifyingpilates.pdf  in particular her article "Modifying Pilates for Clients With Osteoporosis"  If you are planning to do Pilates you should read it.  If you are already doing Pilates it would be a good read for your instructor. If you're in California you could takes classes with her. Below is an example of a back strengthening exercise.

                                                           Extension Exercise

Here is the rationale behind avoiding the flexion (forward bending) and doing the extension movements.  It's one of many papers by Dr Mersheed Sinaki, who studies the effect of muscle strength and exercise on bone mineral density and back pain.

She mentions a correlation between muscle mass and bone mass - so that's why you need to get stronger with inflammatory arthritis.

I am not sure if we could become as strong as these two ladies below but they are great examples.  I am a lot younger than they are and they have me beat by miles.

                                     Ernestine Shepperd,74  - oldest competitive female bodybuilder

                                                                Richard Lautens Toronto Star

                  Ida Herbert 96 -  Guinness World Record World’s oldest yoga teacher.
                                                          
                                        
There are more actions you can take for your bones you can do for your bones so this is the topic for the next post also.
Here's a link to Post #1 about RA and bones.