RA and the Bone Surprise - Osteoporosis

When I was diagnosed with RA I knew that it was possible to have destruction and damage to my joints.  And I could tell by looking at my hands and my feet, and by the way that they felt, exactly where the damage was likely to be.

                                                                      BrookburnPrimary.net

But the problems are always in what you don't know and so don't ask.

This is what I did not know: While my joints were being damaged I was also losing bone mass. "This loss of bone mineral density in rheumatoid arthritis occurs early in the disease and this is the time to start treating for osteoporosis risk by preventing bone loss".


So the RA treatment I was getting was aimed at putting out the house fire (inflammation) while there were termites in the beams (loss of bone mass).

That's my rheumatologist there in the front seat of the fire truck concentrating on putting out the house fire(inflammation).  None of my 3 rheumatologists ever mentioned osteoporosis as something to worry about.  I had 20 years of treatment with  never a word (that sunk in) about the dangers of osteoporosis,thinning bones and fragility fractures.

Once I found out that my inactivity and inflammation had actually made my bones hit the red line for osteoporosis my first reaction was anger.  Then I kicked myself for not using common sense and figuring this out.  Next I got a referral to the Osteoporosis Clinic at Women's College Hospital in Toronto.  They have an excellent multidisciplinary program where patients meet with a doctor, physiotherapist, dietician, pharmacist and an occupational therapist.  Armed with all of that information I was ready to be a late starter and work on my bones.

I started with simple muscle tightening which I describe in my blog post here.

Now I do a modified form of Pilates. It is customized to accommodate damage to my hands and feet and a fragile spine.  With osteoporosis you should avoid flexion (bending forward) as much as possible and do a lot of extension exercises.

I do it at home because I am afraid that I will be the Tin Man in the gym.  Exercising in a group may be more fun and if any readers in Toronto want to get together for Pilates they could join me, but the big plus to exercising at home is that all of the time you have available is used for exercise, not in getting from one place to another, including parking and changing.

Here is a link to my favorite osteoporosis site by Dr Susan Ott. You can calculate your own fracture risk using the calculator on the site. http://courses.washington.edu/bonephys/  She does a great job in keeping it updated and ad-free.

The next post will deal with what to do to improve your risks and why exercise is helpful. 

Fairy Tales of RA

Living with chronic illness has a lot of challenges, so in response to RA Warrior's challenge, here are some of the many things that bring me comfort and distraction in my life with rheumatoid arthritis. 

The first one would be getting lost in a good book.  Now when I do get sick it hits me harder and there is nothing more helpful than a really gripping story.  Thinking back to childhood this is the shelf in the library that I gravitated toward.  Over a few years I read nothing but collections of stories from around the world.

                                                       Fairy Tales collected by Andrew Lang

Fairy tales have coloured my view of what is the ideal comfort, and who can forget The Princess and the Pea.  Though she slept on a huge pile a feather beds she could still feel that irritating pea under her mattress.  I got a feather bed a few years ago and I don't believe she could have felt the pea. A feather bed is very cosy and comfortable, as we know from both fairy tales and historical fiction. You can put it on top of your regular mattress and test the pean theory with a piece of Lego.  It gets a big AAAH from me.

                                                                         A feather bed

The Princess and the Pea 

When I think of Little Red Riding Hood the first thing I see in my mind is the wolf, snuggled into Granny's bed with her sleeping cap on.  And I am sure the wolf is snuggled under a duvet.

There is nothing warmer and lighter to sleep under than a goose down duvet.  I have taken some advice I read once to use the duvet alone without a top sheet.  That makes it easy to shift at night and the bed is made with a shake in the morning. Sleep is vitally important in chronic disease.  That's why I am so fixated on maximum comfort and minimum irritation. 

Wolf in bed under duvet 

This fits into Little Red Riding Hood again and here we have the loyal pet dressed as the wolf and pretending to be Granny. "Oh what big teeth you have".  A pet is the source of so much comfort and fun for people.  Time and again I read of the devotion and strong connection between pets and those who live with them. It's healthy, often lifesaving, and a lot of fun to live with a "furry person".

Loyal Pet 

Cashmere shawl (worn by the good witches). I can't find a fairy tale to match this choice but I am convinced that good witches are not only nice but fluffy.  Nothing can match the luxurious feel of a soft shawl or wrap.

Fluffy Shawl

Hansel & Gretel

And now my final (and most scary comfort). What symbolizes comfort food better than the witch's house in Hansel and Gretel that is made of candy and sweets.  So tempting and I don't even have the excuse of being an undernourished small child. 

So much sugar to tempt Hansel and Gretel 

Fairy tales always have a dark and frightening side and so does the reason I am so attached to my comforts.  Chronic illness is a real burden, and unfortunately you never get to retire or toss it aside.  Giving treats to the body and soul makes it easier to cope and gives us something to look forward to.  Small pleasures are one of the joys of life.

This post is part of a blog carnival:

Ideas for Relieving Rheumatoid Arthritis Pain http://rawarrior.com/ideas-for-relieving-rheumatoid-arthritis-pain/

A very good idea from Kelly for an (almost) year end round up, so we can all go into the New Year happier and healthier.

Leaping Tall Buildings For Your Art

In searching for articles and papers about Rheumatoid Arthritis I came across two that talked about famous artists. I had heard that Renoir had RA and that makes his body of work even more impressive.  From the picture below it looks like he was making his own working splints. Eventually he painted with the brush wedged into his hand.

     Renoir's hands

Garden by Renoir

Great artists with RA: what did their diseaseand coping teach? Part I. Pierre-Auguste Renoir and Alexej von Jawlensky by Dr Henning Zeidler. As Renoir said. "The pain passes but the beauty remains."

Here's is one of von Jawlensky"s paintings

                                                           Alexej von Jawlensky

It amazes me that they were capable of so much sustained creative work at the same time as they were coping with uncontrolled arthritis. No Dmards, no biologics, just sheer determination. 

In chronic disease there is some discussion of "learned helplessness".  That is pretty well self explanatory. If someone else will take on everything that is difficult for you to do, you eventually will avoid those tasks even when you may feel well enough to do them at a later date.  It's hard to keep fighting to hang onto your independance.

Here are the artists of Part ll


Great Artists With Rheumatoid Arthritis. What Did Their Disease and Coping Teach?: Part II. Raoul Dufy and Niki de Saint Phalle.

"These artists represent an outstanding example of successful coping with RA in former times when, for the first time, corticosteroids were available, but nevertheless treatment was very limited"

                                                                       Raoul Dufy

This is not the work of miserable people. They must have had awesome coping resources. Maybe they were helped by the fact that this was their occupation and they were very successful in this creative sphere so they were never faced with the "permanent non-participation in the workforce" that can be so damaging to people who must unwillingly give up the jobs they want to or are trained to do.

To me these are inspiring stories about possibilities. 

                                                                           Niki de Saint Phalle

If I could run around like these bathing suit ladies I would be so happy.

I Can't Stand Standing

That is, I can't stand to stand.  Walking is easier than just standing. The damage to this standing elephant's lower extremities resonated with me.  I would never last as long as this elephant has though.

It's hard to explain to neighbours as you walk around the block that you just can't chat for long, and it also makes you "stand out" at parties when you are the only one who is sitting.  It's also awkward at those meet and mingle professional meetings, though it is even harder to talk to strangers when all of the activity is going on 2 feet above your head as you sit.

My husband hates to park us in the disabled spots because, as an able bodied person, he gets the fishy eye. But he will do that for me if I need to walk less.  Usually in a large parking lot he will drop me and then pick me up at the door so then we don't use the pass.

If I needed to use a cane it would be one with specially molded grips for people with hand trouble.

Looks comfortable but still can strain joints

However even those are too difficult to grip so I use the forearm crutch sometimes called a "Canadian crutch".  That way I can lean on it as well as keep my balance.  I have used crutches like this through three foot operations and they are easy on the hands.  It's worth getting them if you have problems with your grip.

Hard to rent so I bought a set

 
It's hard to use a walking aid because most of us can't get past the psychological barrier and don't want to be branded as "disabled" It might help if you looked at a cane or crutch as a signal that you have a problem, since it makes your invisible health problem very visible to people. It does the talking for you and makes a good short cut for help and understanding with your mobility problems.

It also means that you can see and do more with your family and not have to pay the price for "overdoing it" My friend has been using a wheelchair to tour stately homes and villages in the UK and she will have those memories to treasure all her life.

                                        www.gardenvisit.com

If you ask Jill if it is worth it to use a wheelchair when it adds to her experiences, she'll say yes, though I know how she struggled against using it at first.

Chronic Disease and Heroism

I read some of this: A Guide To Transforming Patient Experience. It's more for professionals and managers in health care, but has a lot of good information. Though it is about health care in the UK, I think the patient experience has basic similarities no matter where you are.

This is a quote from Page 1:

"Patients tell us that they care about their experience of care as much as clinical effectiveness and safety. They want to feel informed, supported and listened to so that they can make meaningful decisions and choices about their care. They want to be treated as a person not a number"

                                                                                   Transforming Patient Experience

I'm sure that we all want to hit that spot in the middle where the circles overlap.  Effectiveness, safety and a good experience.  If you can't have all of those aspects then it's a personal choice about what we are going to prioritize.

To me short term clinical effectiveness is not the most important. We're in this for the long haul and we need to be able to trust and work with the doctor who is trying to help us. Certainly if we have a doctor like Dr. Greenbaum portrayed himself in his Kiss My ___ article/rant about patients it will be a harder road. 

And I know that for some of us the road is as hard as the one in the picture.


It comes down to RA Warrior's prison rules - a lot of hard choices. I thought this was a very apt post from Kelly Young.

http://rawarrior.com/rheumatoid-disease-plays-by-prison-rules/

It is a darn good thing that Kelly made her own warrior woman.  When I looked for an image of a warrior on Google images I found that I could not associate the warriors in most of them with Kelly.

It is definitely a fight to get along with RA and we don't have a reasonable chance to ignore it. Sometimes I feel like a poster woman for Big Pharma because in my case most of the treatments I have tried have worked in slowing down the progression of the RA and improving my quality of life. I spent most of my working life with RA: when I started finding out about RA I found a statement that said a large % of patients were not working after 10 years and I managed 30 years.

I'd say we are all heroes, and it makes me feel a little better about myself to say that.  I'll have to work on that hero idea. I hope you can too.

Splints are not Glamorous

When I was first diagnosed I saw an occupational therapist who recommended that I wear resting splints at night so that my hands and wrists would feel better in the morning.  They are quite effective for that and I have worn them for 25 years - of course they need to be replaced every few years.  To deal with the fact that plastic can make you feel very warm, even with small ventilation holes in it, I cut up cotton socks to wear as liners.  I posted these pictures of the resting splints that I use for my hands and wrists at night in my online support group.

This is the comment I got from Judy after she saw the pictures.

"Your hand/wrist splints look very much like mine.  I don't have to wear them much anymore.  I used to wear them every night.  One night, my arms got stuck together with the Velcro on each splint.  I had to have Jim help me get them separated.

I can put them all on and look like I am ready for Halloween. You should see a box in my closet - I have about every kind of splint you can think of in the box plus ace bandages.  I have all kinds of ankle wraps.  I used to go out of the house looking like some kind of a mummy with all of my wraps, splints, etc."

So that really brings home the glamour, or lack thereof, of taking care of yourself.

For my fingers I have found a more stylish and very effective alternative. Silver ring splints keep your finger joints in a good position and look like up to date and unusual jewelry. The most frequent use for them is to correct a swan neck deformity (love the RA vocabulary). I can show you a very obvious example of that, and will, but be aware that with more effective drugs and treatment you don't see fingers like this so often anymore.

So you see here the finger without the splint and then with it. Showing these pictures almost feels like stripping. Unless I am demonstrating textbook examples for medical professionals my fingers are very seldom front and center

The silver ring splints can be used for other hand problems as well (like EDS for example) and can make joints more functional.

                                                                          digisplint.com

I have read clinical studies that say that results of using splints are inconclusive. There are a few reasons for that lack of consensus. One is that people find them uncomfortable or ugly so they don't continue wearing them and leave the trial.  In my opinion the other reason is that those who run the studies would have to follow the people for many  more years than their funding would last to be able to see a difference, and would have trouble finding a control group who would agree to participate and not use anything.

We're all so individual with our autoimmune diseases.

                                                                     CafePress.com

I have more splints but not more pictures, so I will follow up with more in the future. I'm like Judy. A whole box of splints under the bed.  As they wear out. I don't throw them out, just in case.