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.

Sjogren's Makes Life More Complicated

After 20 years with Rheumatoid Arthritis I developed Sjogrens Syndrome.  It is another autoimmune disease most recognizably showing itself as very dry eyes and mouth. It would have been called Secondary Sjogren's in the past because it developed with another autoimmune disease, but the classification criteria has changed recently.

                                                                           

Dryness is a problem

The dryness affects all areas of the body but is far more noticeable and annoying in the eyes and mouth. I use pilocarpine (salagen) in pill form for my dry mouth. It is a prescription drug. Without it my voice starts to diminish and I cough and choke a lot. It is possible to have a compounding pharmacy make up a mouthwash using pilocarpine but it has a very bitter taste.  I also use Biotene Oral Balance at night.

Since the lack of saliva makes your teeth more susceptible to decay it is very important to take care of your teeth well.  I read that using a night guard when you sleep helps with the saliva production because it is a "foreign body" in your mouth, so I got one. I also clench my teeth and get headaches and this helps with dryness and clenching.  You can put a re-mineralizing agent like MI Paste on your teeth under the nightguard to strengthen your teeth.  This. picture shows a whitening tray but it looks like my nightguard

Night Guard for teeth

You can also massage your salivary glands to help stimulate saliva flow. It works best on the large glands near the temporomandibular joint located in front of your ears.

At the last Sjogren's Canada Patient Conference I asked Dr. Yepes if Salagen would keep me from losing function in salivary glands and the answer was no. I did hear that there are usually some salivary glands spared. Up to 50% of your glands can be functional and yet you still feel very dry.

I added this picture because in the past my eyes were so dry that I would look at my computer screen with my eyes half closed because they were so dry and painful.  The dryness also made me go to bed early sometimes because dryness can makes your eyes feel so sore you just can't keep them open comfortably.  I tried punctal plugs (a doctor can plug your tear ducts so the tears stay on the eye) and they helped somewhat. In fact I have had them in my lower tear ducts for the past six years. Then since I was still dry I was able to try Restasis prescription eye drops and they worked for me. That was a break since they don't work for everyone. These drops contain cyclosporin and while they do sting a little, it's worth it for me. I get best results by putting them in my eyes  and then shutting my eyes for a few minutes.

Restasis

I use hormones too.  Dr Ann Parke has spoken at most of the annual conferences of the Sjogren's Society of Canada and is a leading expert on the subject.  She touched on this subject favourably so I am more reassured about the effects of hormones than I would be otherwise. Hormones help with the vaginal dryness and the frequent UTIs.

Sjogren's is different for everyone, but I find it almost a part time job just to care for Sjogren's Syndrome alone.
 
I just read today about acupuncture and Sjogren's in Julia's Reasonably Well blog about Living Well With Sjogrens    She has a great picture of acupuncture points and some useful advice too.

Also, I have found www.dry.org to be a good source of practical info from Dr Robert Fox, who is a leader in the field of Sjogren's Syndrome. If you look for research on PubMed you will find many papers credited to him.

How to bandage a skin tear if you're allergic to adhesive

Some more advice from Judy for people who are allergic to tape and bandage adhesive.  Judy has many areas of expertise.

When I get a skin tear, I first put on an antibiotic ointment.

Try to keep any skin in place by pushing it over the tear.

Then I put a sterile non-stick pad over the skin tear.

Then I use a piece of a roll of the self-adhesive elastic bandage like the one pictured below.  There are many different brands at your drugstore or pharmacy.

You cut a piece that will fit around your arm wound and hold the sterile pad in place.  You might have to do two wraps of it.  It will keep the sterile pad in place without using any kind of adhesive tape.  This tape sticks to itself and not your skin.  I am allergic to any kind of adhesive tape and the regular adhesive tape pulls off my skin - so this is very good for me.  You might want to try it. 

Plantar Fasciitis in Rheumatoid Arthritis

Here is the story that my friend Judy told about her bout with Plantar Fasciitis. She generously shared her doctor's solution.  This worked for her - neither of us is a doctor so check with your doctor first. 

It always helps to know the possibilities though so here it is.  Some Doctors say there is nothing that can be done so it is good to know the possibilities.

"I had a very bad spell with plantar fasciitis.  I got out of bed at night and it was like lightening was going through my left foot and leg.  I could not put any weight on my foot at all because it was so painful.  The foot doctor said that I had plantar fasciitis and apparently had small tears at the part where the connective tissue joins the bottom of the heel.  I really stepped on my foot the wrong way.

The treatment is a night splint OR they can give you a very painful steroid shot right in the bottom of the heel.  I choose to try the night splint for 2 weeks.  My foot slowly got better and then it did heal without having to have the steroid shot."

Active Ankle Dorsal Night Splint (DNS)

FRONT VIEW OF NIGHT SPLINT              SIDE VIEW OF NIGHT SPLINT

This is the kind that I use. The night splint comes in small, medium and large.  It is interchangeable from left or right foot by moving a piece in the front.  I also wear a night splint for pain in the heel or ankle.  You wouldn't believe how much this helps.  They do say that you can walk a short distance in this splint as it has a rough piece on the bottom of the toe part - BUT - don't try to do that.  The splint is not for walking - only sleeping or resting.

 I wear my splint over a long, cushy sock so that the Velcro doesn't bother my skin."

Indications for using this night splint: Plantar Faciitis Achilles tendonitis/repairs Foot drop/Neurological deficits Stroke patients Heel Spur Syndrome Sore Heal/heal pain Goals : Decrease pain in A.M. Delay heel spur surgery Decrease anti-inflammatory medications Decrease pain symptoms Improve ambulation Prevent contracture of Achilles Tendon (from http://www.achillesmed.com/phantom-dorsal-night-splint.html ) There are also exercises that can be done to help plantar fasciitis - see a foot doctor for instructions. You also need lots of rest as spending long hours standing will aggravate it.

Your Brain on Pain

I have been worrying about brain power so I thought that reading blogs about the topic might help. One of them said "Ban the calculator" which lead me to think back to the year when calculators became so cheap that we gave them to people for Christmas presents. That was a big deal back in the 70s (?) and now you can get them free.

Maybe it's a sign of aging that I can now remember when commonplace items of the present were not a part of my life.

This worry about memory may be because of the "brain fog" connected to medication and illness that affects cognitive abilities.  Even mild sleeping pills can cause a decline, especially in the elderly (That starts when?).

Honestly I think that pain also has the effect of dragging down your thinking powers and your will to do things.  Before I was diagnosed with RA I has serious symptoms like fatigue, swelling, pain and weight loss but all I could think of was successfully continuing my life as it was.  That took all of the energy I had.  Even working only part time I would come home from work and fall asleep with my clothes on. So there was no energy left to help me develop ideas to solve the problem on my own or to find help for a solution.

It's amazing to me that so many people with chronic disease get past this and do so well at helping others get out of the trap. An effective treatment for your health problem is the best way to get out of this slump but that is as far away as the gold at the end of the rainbow.  Proper treatment was what finally got me on the slow train of not recovery exactly, but improvement.

Here is the link to the LifeHack post on increasing brain power
http://www.lifehack.org/articles/productivity/10-simple-ways-to-increase-your-brain-power.html
Tip #1 also sounds like a good way to have more fun, though it won't be sky diving for me. 

Really and selfishly my prime goal is to be happy and I think I finally decided that eating too much is not really making me happy.  I would like to be as happy as my old avatar looks like she was, or this baby.

Pathways to knowledge

Turkey season is coming. Here is a picture that my friend Phyllis took of  "The Bird Itself" in her driveway in New York state. It scared her a bit. Look at that face.

Phyllis was an avid gardener and was part of a Yahoo RA group called RA-Factor that I have been in for the last 10 years. Needless to say we have all grown close. People come and go depending on circumstances but many of us stay with it for the support, information and for the freedom to complain about RA to people who understand the issues and do not take it personally.

She was the first person to offer advice and she enjoyed telling stories about Mr. Sticky Fingers - her grandson, making tags for people and sharing advice with the group.

She started feeling unwell in general with a cough and a cold, a headache and back pain.  Her doctor suggested bronchitis and gave her an inhaler and prednisone. It was not the first appointment she had that was inconclusive.  With RA it's easy to assume that any issue is connected to the inflammatory disease.  It turned out that she was fatally ill and died a few years ago.

So this is a reflective post.  I remember reading about morbidity and mortality in RA on the American College of Rheumatology website years ago when I was avidly searching for information. That was depressing though I know the outlook is better now.  I kept finding new complications and issues that might occur, but managed to keep my anxiety level low by doing what doctors call watchful waiting.  So I watched and I waited and nothing ever developed.  That was one good way to make the anxiety level drop, even though it took many years. 

I think anxiety is a real problem with a chronic disease and knowledge is a good way to dampen it.  Things have improved in access to information. When I was diagnosed 30 years ago if you wanted info the sources were magazines, newspapers or books. Of course doctors were a possibility but I was feeling so shocked that I had trouble absorbing what the doctor had to say.

The internet has been a big help to me.  It has made me much more informed and has speeded up my treatment because now I know the vocabulary and which questions are the right ones.  It also helps me to know the treatments and what to expect if the medications are working.

  

                                                                                    Merrimack Pharmaceuticals
                                                                     Pathways to Knowledge

Now there are so many pathways to find the information that you need.  It's like going from the horse and buggy to a spaceship - from library books to 30 gigabytes.  Our first computer was a Vic 20. That means the memory was 20K and I think it had 3K of RAM.  We could play Pong and it was fun.

We still have one of these in the basement

It was an exciting learning experience but still a long way from social media and smartphones.  So I would say we've come a long way in healthcare and every day we see the results of the progress.

Support and information is now available at any hour of the day or night. That alone is enough to help us all to feel a bit better.


                                                 

Managing Big Problems in Chronic Disease

                                                                          Lars Hagberg
With chronic disease some days all of your problems look like big ones, especially in the fall and winter when it is dark and gloomy, cold and wet.  I find that large vegetables cheer me up quite effectively but that is not a life solution.

This morning I read a blog by Carolyn Thomas at The Ethical Nag http://ethicalnag.org/2012/11/01/multiple-chronic-conditions/

She talks about what we have to do to manage our chronic disease well and lists the four main areas we have to juggle.  I know from experience that the hard part is maintaining "simultaneous control" over all aspects of our conditions in the long term.

I felt a lot better to hear that I was not the only one who is challenged in one area or another and the next reading I do might be about emotional eating.  It's hard to say your diet is good with all the edges filled in with tiny chocolate bars, dry roasted peanuts and little bags of chips and cheetos. Maybe more sushi is in order.

                                                          sushi by Sarah Yip


There is so much information and advice available everywhere we look.  I have been developing a list of links and have almost filled up my new free program called Evernote - maybe not filled but it refused to add new links in my main document for a while. (Update: it's back to normal now)

Online patient communities are a great source of support and solace.  Talking to friends who totally understand what you are going through makes you feel better.  They are so easy to find on Twitter and in patient groups.  I can't say much about Facebook as I skipped that step.

And for my Fall Resolution: Go out and see more people.  Or if that seems impossible I'll invite them here for pizza or tea and cookies.  Maybe a cake of my dreams.

You see that's the problem of the moment - eating.  Looks like Carolyn has a post for that too.


                                                                          

Things you lose

No doubt about the fact that chronic disease takes a toll on the plans that we have for the future.

How much does that matter?  If you don't have concrete plans for your life your immediate goals are not thwarted, however most of us have kids, grandkids and relatives to deal with. RA can change all of your social relationships.  It is a large price you pay when you are not even able to pick up your children or grandchildren.  I think that is the most poignant problem.

This is me with long hair.  With RA it was just too much work, so even though it survived baby sneezes full of pablum and many sticky fingers it had to go.  Actually I think I still have it in a drawer somewhere.  Lost...

There is no easy answer for this.  RA is the "gift" that keeps on taking, so you have to go through the whole loss  and grief cycle over and over.  

We need to find coping resources that help us to make sense of events and to manage them.  These resources can be anything that works for you.  Most commonly social support and the strength you have within are the most help.

It is good to switch your focus to factors that promote your health and well being.  I have read so many blogs recently where people are doing just that. 

Like Arthritis Ashley collecting information and links to share with everyone and Tanya Martin working hard to get more people involved and with advocating to make things better.  

Also on a really big scale RA Warrior.  I bet that when Kelly started on her path she never dreamed that her blog would resonate with so many people.  

Don't discount the benefits of educating yourself so that you can understand what is going on in your life and try to manage some parts of it. 
                                                          

This learning skeleton is by Aaron Kuehn in case learning anatomy is on your To Do list

This is a huge topic and there will be more to come.