The Groundhog is a Symbol of RA Awareness

At last we have a day dedicated to raising awareness of Rheumatoid Disease! This accomplishment did not occur overnight. Congratulations to Kelly Young, @RAWarrior, on this huge achievement that obviously took a great deal of sustained effort.  Here's the press release from Year 1 -  2013!

We hope that this will help to raise awareness of RAD (Rheumatoid Arthritis Disease) in new areas. The more awareness we can spread the better it will be for all of us now, and for those to come in the future.

Unfortunately Rheumatoid Arthritis Disease can't be treated as though we were in the movie "Groundhog Day" where we can work on our skills and refine our treatments until we achieve success and then are rewarded with a healthy normal life once we get it right.  Bill Murray had time to perfect all of his skills by repetition.  Not like us.

When we pop out of our burrows with RAD (Rheumatoid Arthritis Disease), whether the doctor sees the shadow (RAD) and treats it, or doesn't see it and we wait longer, the reaction is vital to us.

Ideally fast treatment that is the "right" one for us affects our lives dramatically, much more than the length of our winter this year will.  These are our lives that we are talking about here.

Awareness is important at all levels, from parents, to friends, to doctors who may not readily recognize this tricky disease. Lack of knowledge may cause you to miss that narrow window where the right treatment could bring you into remission. 

For too many of us we just don't have time to get a chronic complex disease, or we believe doctors who insinuate that it is all in our minds, or just due to our circumstances.

                                                       thejanedough.com

After all, we know we can cope with life - we've been doing it all along.  It takes something like being unable to get out of bed in the morning due to painful feet, or being unable to unlock a bathroom stall, or falling asleep over dinner to convince us that there's a problem.  Some of us realize things aren't right when we notice we're sleeping longer than our cats

                                                           Toiche and his pillow
 or other pets (The dog wants in)

                                                Dolly on her monkey bed

So I would urge everyone to build on Kelly's success and to spread awareness of RAD through articles, blogs, passing on the press release, an even getting articles in church bulletins.  This infographic/poster called RA Symptom's: A Patients Perspective in particular lays out symptom details very effectively for anyone to understand.

In the meantime I am going to try to be like this little fellow and hope that arming myself with knowledge will help me cut though all of the obstacles and shadows that will face me in the future.

Heartbreak: Shoes and RA

The whole truth is that I have given up on cool sexy shoes and now concentrate on comfort and being able to walk in a way that looks normal.  It has taken a long time for me to become so philosophic about this issue.  It often felt like the main limiting factor in my professional life was my footwear.  I used to cringe at my overall "look" in a full length mirror, even though I don't think most people look at your feet when you are talking business in a room full of colleagues.  But we all know the people with "good" shoes check yours out. It's a ranking system for them.

                                          Greg Blackstock Shoes

How many of the shoes above can you still wear? Are you trapped with ugly shoes?

I almost walked right out of the store years ago when a salesperson suggested I get shoes like this (really I almost cried):

They were unthinkable as a shoe choice!! I got some cool lace up blue leather boots instead.

Imagine these on your feet: 

Of course these shoes would take too much money out of our drug and pain rub budget as well as torturing feet, but can you imagine?!  That's all I can do - imagine.  I could wear them in a wheelchair - maybe.

I'm glad to see there are more sensible choices now that do not look so bad these days. 

ComfortShoes

I couldn't wear the shoes above but I bet many people with RA could.

I just stick with my trusty New Balance 926s. 

They have a rollbar that does part of the walking for me and a lot of cushioning built in. 

Wishing for the feet of a baby.

My Feet Were the First Victims of RA

After almost two years of being sick and having no diagnosis, the problem of dealing with feet I could hardly on walk on was serious. I had to take steps to find out what was the matter with me.  Dr A had no answers so I switched to Dr B - a sports doctor. Neither helped and it seemed that they never would, so I decided to go to a foot clinic.  There I met some enthusiastic residents with many ideas, but when the orthopedic surgeon stepped in he said "Send the lady for a blood test"

So after all that time of feeling that I was walking on knives when I got up in the morning, I had an answer.  The blood test showed unmistakably that I had Rheumatoid Arthritis.  

The Little Mermaid in fairy tales kept going through my mind during that time. That feeling she had of walking on knives when she gave up her tail was the biggest downside of being human.

                                                                     openlibrary.org

Luckily as my treatment plan unfolded with a team of health professionals the OT (occupational therapist) sent me to the hospital foot clinic for orthotics. I think of them as splints for the feet.  They helped: I was able to walk much better with them and had a lot less pain. Over the years the materials used to make them changed.  At the hospital the orthotic workshop used rubber that had some "give" to it.  This was good because I needed something softer to walk on, and they were able to accommodate my toes that were turning under, as well as align my feet properly.

When some of your toes start to stick up above your other toes they rub on the top of the shoe and get swollen sore red bumps. Sheep's wool padding helped with the top of the foot. Because the orthotics were custom made, they allowed little depressions for the toes that needed room below the level of the sole of my foot. The orthotist used leather as a top layer to make a smooth surface.

                                   side view of orthotic, inside view of foot back2feet.com

This is a side view of an orthotic showing the layers used to make it. It is a little short for that foot.

Once I had a pair of lovely to look at orthotics. They were made of acrylic plastic and clear like jelly.

                                     fracturedamy.blogspot.com

They were so disappointing. Lovely to look at and just like walking on concrete. I've been told that RA feet are more sensitive because we lose the fat pads on the soles of our feet.  I can attest to that sensitivity and add to it the other common feeling of walking on marbles.

These days I wear socks with padded feet made for people with diabetes. They give me a little more cushioning. The best socks are actually techno ski socks of pure wool but no one in Florida or the south would want to wear them. It takes a cold climate to appreciate their smart padding.

                                                   smartwool socks
I may never have really happy feet, but with my orthotics I don't limp anymore, and I am sure that my knees and hips are better because of them.

                                 flickr CCCvrcak   Happy Feet

Blogging For Health

What do you think the best health strategy would be?  A bowl of fruit daily, a blog post at regular intervals or a multivitamin?

Some may say that's like comparing apples and computers.

    

Fruit courtesy of DH

From what I have been reading you are well advised to turn on the computer and start blogging if you are looking for a novel yet accepted method of dealing with chronic disease.

Creative outlets are distracting in a good way. When you are creating something it is a huge distraction from pain or unpleasant circumstances.  That's why we see people with hand problems adapting in many ways to keep from losing their creative outlets. 

                                                          garlic clove

                                  cactus & mutant bunny all knitted by Cat Beattie

The act of writing a blog is a creative work also. I read at The Seated View last week that Lene researched writing before she started her book and found two things essential to success as a writer. It was the second essential where she cited Dorothy Parker and Stephen King  that made me remember her post and look back as I was struggling with this one. To see the essentials have a look at her post here. 

One thing I have always appreciated in Stephen King is his ability to use details of music, books and surroundings to set his work in a specific time or place.  This is a quality you find in many blogs of all types, not just health blogs.  Here's my idea of a shelf of interesting books. You can see why advice from King might resonate with me.

I was advised to keep a journal as a method of improving my health in a self management course and was very skeptical of the value.  Now I am coming to realize that a blog is a lot like journaling and I can see benefits to continuing to do this. 

This is a quote from the Health Mentor program that I mentioned in this post. "Personal reflection has long been recognized as an important learning tool, where new ideas and concepts can become integrated into future critical thinking and practice." It is a learning tool for others as well as for the blogger, so blogging makes you feel good about sharing hard learned information.

                                         Rosetta Stone

If you are a person who likes to help others or is accustomed to being in what I think of as a "helper profession" it can be very satisfying to share your knowledge. Julia's past career as a nurse helps her to do a great job now at  Reasonably Well in sharing information about Sjogren's Syndrome and other "fun" issues like bursitis.  She's the only person I know who ever made cookies for her infusion nurses - Mousie cookies.

                                    Julia's mousie cookies

And here are some conclusions of a paper by Pamela Ressler, Y. Bradshaw, K. Kwan and Lisa Gualtieri. The data was gathered by online questionnaire and they say it warrants further study but it makes sense to me.

Communicating the Experience of Chronic Pain and Illness Through Blogging

"Results suggest that blogging about chronic pain and illness may decrease a sense of isolation through the establishment of online connections with others and increases a sense of purpose to help others in similar situations.
Respondents reported that initiating and maintaining an illness blog resulted in increased connection with others, decreased isolation, and provided an opportunity to tell their illness story. Blogging promoted accountability (to self and others) and created opportunities for making meaning and gaining insights from the experience of illness, which nurtured a sense of purpose and furthered their understanding of their illness."

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.