Wednesday, 31 December 2014

What Next 2015?

Last year on New Year's Eve I was thinking about my hopes for the coming year - they were simple but seemed like stretch goals that would take five years or more to achieve.

My ambition for 2014 was to be a Medicine X ePatient Scholar and to have a Walking Gallery jacket done by Regina Holliday. Both of those things happened in 2014, and I appreciate and would like to thank my social media and online friends with being an amazing help throughout the year. I'd also like to thank Regina Holliday for her great insight, and for inspiring people to think in pictures.

MedX was inspiring, exhilarating, intense and a huge chance to grow as an advocate and connect with like minded people. The jacket, with great timing, arrived in Palo Alto for the first day of the MedX conference. So much happened in those four short days.

Here's a picture of the jacket - it tells the story of my first years with RA and without a diagnosis.

Walking Gallery jacket by Regina Holliday - It's A Mystery

"It's A Mystery" is inspired partly by my life-long love of mystery books, especially those from the "Golden Age" of mystery. The front covers of the books from that time, and the mood in them is  still unmistakeable. That's the Toronto skyline in the background, with the CN Tower acting as the tent pole, or the beacon.

The doctor is a shadowy figure - if he knew the diagnosis it didn't help me much. 

His final piece of advice: "Take 12 aspirins a day and come back in three months" led me to see another doctor when that didn't help. Regina did a great job of bringing those times to life.

There I am lying on the ground with huge fatigue and two little boys, while my feet are so sore I can hardly walk. At the time I credited Diet Coke with the sudden weight loss. The doctor's explanation for the pain - "You're a busy mom."

This disappointing beginning to a story of life with chronic illness was what caused me to start to question my role as a patient and my relationship with doctors. With the story laid out so clearly on my back, I can use the circumstances of my non-diagnosis as a starting point. One thing I know - If things had gone better when I first had symptoms there would have been no impetus for me to be involved in health advocacy now.

With the story of my disappointment with a failure in healthcare is on my back when I wear the jacket, but that's the starting point. With it as a springboard I can easily talk about the passion I have now for the inclusion of the patient voice in decision making in health care.

Since I've been home from MedX I will swear that the idea of the "MedX Halo" is not a myth. I've been to six rewarding and interesting conferences since then, and have three scheduled for 2015. Working hard to learn more and advance the idea that the patient voice should be included at the decision making level in health care has been satisfying and the rewards outweigh the efforts.
We're a long way from seeing inclusion of patients as a common practice, but if we work together persistently we can advance change. I like this Margaret Mead quote:

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has."

In 2013 the National Forum on Patient Experience did not include patients. In 2014 there were many patients. That was a success.
In 2015 there is a conference coming up called Canadian Patient Relations Conference: Making the Invisible, Visible: Hearing the Patient Family and Caregiver Voice. There will actually be one patient in attendance - giving a keynote speech. That should be enough for patients, right?

Being a member of the Society For Participatory Medicine is another excellent way to attempt to keep up with the issues of participatory medicine and patient empowerment.

MedX ePatient Scholars & Student Leaders by @Hurtblogger
The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

Sunday, 14 December 2014

Christmas Story

Last Christmas was like no other. We watched Saturday Night Live on the weekend before the holiday, and in the morning when we woke up we had no power. Just looking at all of the downed branches outside our windows told us all we needed to know about our prospects of renewed light and heat.

We had a huge ice storm that coated everything in a thick layer of ice overnight. I put on long johns, ski socks and my warmest cosy wool pants as a base layer, followed by 2 pairs of sweats. Of course the top pair had to have pockets for flashlights. It took six layers on my top half just to cope with the inside temperature. 

Backyard Tree 

We stayed home for the duration with lots of clothes, double duvets and candles. Luckily we had hot water and our neighbour has a gas stove for coffee. The bus that normally comes past our house had to reroute because there was a fallen tree branch and hydro wires down across the road for days.

It's been a long time since daylight made such a difference, as in "Hurry, We need to get home before dark, I forgot my flashlight."

Ice is beautiful but deadly

It was Christmas Eve, 2 1/2 days later, before we had light and heat, so we headed out for our planned Christmas dinner with relatives. We started on our trip around 11:30 am, already behind schedule. By the time we picked up our cousin, and his surprisingly large extra piles of things to take along, including a thawing turkey and his walker it was starting to snow again. 

Finally we got ourselves onto the highway and almost immediately the tire pressure light went on and we had to turn back. At a gas bar we called roadside assist - it was a huge relief that they sounded so capable and promised to send a service man within an hour. 

When he arrived and checked the tire he felt that we just had a sensor problem and could continue. Such a relief! So THEN, an hour after the stop, our cousin decided to get a coffee.

As he disappeared into the store we stood watching the serviceman finish up, a young couple joined us to see what was going on. They were delighted to hear that we had a tire problem and had found help. They really did have a flat tire and were grateful to find a possible Christmas angel. The fact that one was still in PJ's might help explain their  joy.
Emergency guy at the gas bar

We were all ready to go at last BUT where was Cousin B?
I went after him to speed things up and grabbed his coffee to help him speed over to the car. Only then did he decide to meander into the washroom! What he was thinking all the time we waited I'll never know. So we were all waiting for him and when he came out of the washroom he inexplicably ambled around the store searching of that essential lock de-icer he had just imagined he might need for his own car back home.  Needless to say we were late for dinner.

So many things went right overall:

It was so helpful of the attendant at the Shell Gas Bar offered to turn on the air pump to help us.

We felt amazingly lucky to have Roadside Assist come out to help us on the holiday.

Christmas at last. 

We were so happy to have light and heat, not to mention a cooked turkey at the end of Christmas Day. It tasted even better than usual after freezing in the dark for days.

Having to go to bed when it gets dark really brings home the value of heat and light. It's so easy to take for granted.

Thursday, 11 December 2014

We Need More RA Research!

In 2010 I saw Dr. EC Keystone give a talk on advances in the treatment of RA. It was called "The Most Exciting Time in the History of Rheumatoid Arthritis" and I blogged about it here. I'm still absolutely convinced that things are much better than in the early 1980's when I was diagnosed - we have many new drugs to choose from that are much more effective than the drugs of the past, but I'm not convinced it's enough anymore.

Lately I have been finding research papers that make this wonderful progress look less impressive. For one thing it is disturbing when Low Disease Activity is equated to remission in the decision of whether to reduce or discontinue treatment. In how many other diseases is treatment stopped or tapered when there is still evidence of activity?

This is the way I look at the issue. I have 20 joints in my hands that are checked by my rheumatologist during each visit. He uses the DAS 28 scale to judge disease activity. One finger joint has fused during treatment with anti-TNF drugs and four more of them show moderate activity now. That could result in very poor hand function in the future because 25% of my finger joints might end up mostly unusable. This is not enough reason for a change of treatment. It is considered low disease activity despite the possible results. The reason I do not count my wrists in this equation is that they are fused and no longer function as joints since no movement can occur. 

"We don't see hands like this anymore" Recent quote from rheumatologist

Here is another study that monitors functional capacity of patients over a period of three years and concludes that those who require surgery have worse ability to function. More timely access might help, but for many of us this needed surgery is considered elective and we wait; For others it is not affordable.

This study and the one after it really led me to tackle the topic of lifespan:
Patients with rheumatoid arthritis have better functional and working ability but poorer general health and higher comorbidity rates today than in the late 1990s. This study concludes that the advances in treatment and the attention given in the "treat to target" strategy have been successful with rheumatoid disease activity outcomes. "However the result was just the opposite with regard to overall health and co-morbidities". While the lifespan in the general public has increased, this has not been the case with RA patients.  This makes me agree with the authors that there are still challenges in the treatment of rheumatoid arthritis.

The icing on my non-celebratory cake
Influence of Radiographic Joint Damage in Mortality Risk in a Cohort of Rheumatoid Arthritis Patients: A 20 Years Survival Study
"This mortality gap has increased in the last years since mortality rates for RA have remained constant throughout time while mortality rates for the general population have declined."

These two studies taken from abstracts of the American College of Rheumatology meeting this year agree that while treatment and symptoms have improved the bottom line hasn't budged. Our lives are shortened in the same way as in the past. Biologics have been in use long enough that we should be able to detect an improvement in mortality rates. This is not the case. Of course it doesn't change the lives of any of us on this course, but it does give us a darn good reason to advocate for more research, ideally into why the bottom line isn't budging.

Monday, 8 December 2014

Travel and Holidays with Polly. It Gets Harder With Time

I asked my friend Polly about ways her life has changed, getting older with arthritis. Christmas changes. and when you have to travel by yourself with disabilities it gets harder to do.

"Traveling...what's that?  Its been so long.  Now all of my trips are within a two hour drive and mostly to doctor's appointments.  Don't ask about the food at hotels near the hospital.

When I flew...we would always get a nonstop flight.  Those jogs and short layovers were like a marathon.  We didn’t go if there was no nonstop flight available.  Having to hang onto those skinny railings on fast shuttles to get to your next gate was always a challenge for me.  I think it is Cincinnati or Atlanta that has the buses where we had to walk outside on the tarmac and I had to get up those bus steps.  I could barely lift a leg that high then. Now I know I could not do it. I would be asking for a golf cart at the gate.  

Generic airport view (my own)
Packing medications is another obstacle. No, I'm not a senior drug dealer, I really have prescriptions....see???   The Enbrel had to go in the frozen ice pack bag.  Carrying all your medications onto the plane is quite a challenge.   And having to take off my shoes to show my arthritic feet.....lovely.  Many...oh I'm sorry's.."you poor thing".

                              a sample of my prescriptions

Disney do they expect people with our disabilities to get onto that moving assembly line for the rides?    That was a ride before the ride.  I didn’t look forward to trying to coordinate the moving sidewalk with the jump into the cars.  Or climbing down into the Pirates of the Caribbean ships.  Or the lady who did need a scooter in the Big Bear Jamboree who tried to get out of the doors at the end of the show and rolled over my right foot, hit the trash can by the door and almost took out an 8 yr old boy.  I'll take a condo by the beach any day. 

At Christmas, I don’t put a tree up anymore.  Even the easiest are tough and bulky for me.  I have a little ceramic tree that my parents had.  I'm always afraid of dropping it when I get it out of the box.  Almost "everything holidays" has gone to my daughter or the grandchildren. 

Wrapping gifts is totally out of the question.  I used to take pride in my wrapped presents.  Then they started to look like I let a 5 year old wrap the gifts.  No tight corners....fighting with the tape.  Since giving up wrapping, it's been gift cards and money for the family.   

This is the first year I'm not sending out Christmas cards.  It's too hard for me to address all those envelopes and write a little note inside the card.  My wrist starts to ache and my fingers are stiff.  I usually send out about 80-90 cards every holiday.  Stamps are expensive also.  That’s another tradition I'm not carrying over this year. 

 Holidays bring about the snowy wintery weather which is great if you're ten.  But for me, its another obstacle.  I have to pay for the snowplowing and watch my klutzy footing which is bad enough during July much less December.  I try to find rock salt that comes in a smaller and lighter bag. 

Now my idea of a fun evening is jammies and putting on my big fat slippers. Some days I do that right after the postman comes."

Thursday, 4 December 2014

Dropping the Ball on Outcomes?

It seems that sudden dramatic changes in chronic illness, which make it resemble acute illness, get a lot more intensive attention from doctors and the health care system. The gradual long slow loss of parts of our lives and abilities is barely captured, partly because of our skills at adapting. This timeline means those of us with a smoldering illness that just won't quit have to adapt and change dramatically over the years and yet our illness looks less visible than ever.
Living the good life

The regular health related 'quality of life' scales do not measure ability well. For example if you are asked a question about walking up a flight of stairs, you're not asked whether or not you could do it again; or if you run an errand how long does it take you to recover?

The consequences of activity aren't looked at. Many tasks in life are essential, and hard to prioritize. Adrenaline and pain killers can help you accomplish them, but what about the recovery period? If it takes two full days or a week of rest to recover from an activity that's a major consequence and severely limits your life.

I get so annoyed when people say that patients should get up early, take a warm shower and do some light exercises to cope with fatigue. They assume that's all it takes.

Another annoying fact of life if you have rheumatoid arthritis (RA) is that when Drs. are measuring the impact of RA on your life they don't count the joints in the feet. (DAS28 score)  There are many foot joints and they can all affect your life in excruciating ways. The small joints of the hands and feet are most commonly affected first in RA, so why leave half of them out?

Might plastic or 3D printed feet be better for me?

Also I wonder about health goals? I really think doctors and long term patients ought to discuss health goals: not just people newly diagnosed. If my specialist doctor thinks it's good enough to keep me "on the road" and I think we are aiming for a better result then that's a major misalignment in the way we view my personal outcomes. The patient and doctor need to collaborate. Yet, even in Canada, doctors need to be mindful of costs and insurance issues that limit choice.

When we start to talk about comorbidities (illnesses related to your main diagnosis) our GP doctors are too busy. They want to deal with one problem at a time, and yet how can any health issue be separated from a serious chronic disease? 

With such a shortage of rheumatologists there is pressure on them to see as many people as they can, and to stick to treating RA, not complications. 

Patients don't always know what other health issues related to RA they should look out for. If I were a less educated patient, why would I even think of asking a rheumatologist about dry eyes and dry mouth? And yet they are the doctors who usually treat Sjogren's Syndrome which is common in RA.

I see these as some of the gaps in treatment faced by those with long term illness that is unlikely to kill us. It's chronic, and our whole care system is based on treating acute illness.

This post is a continuation of Patient Reported Outcomes.

Monday, 1 December 2014

Not My Jaw Joint Too!

It's possible for rheumatoid arthritis disease to affect your jaw joint (the TMJ or temporo-mandibular joint). It shows up late; long after the RA starts, in the same way RA affects the cervical spine. 

The TMJ is that joint where your jaw is attached to the upper part of your skull

When I asked my GP doctor about the problem years ago he said there were three courses of action. One was just leave it alone, the second involved taking anti-inflammatories, and the third and worst to me was an injection into the joint. I assume that would have been a cortisone injection. It was a horrifying thought then so I took the "leave it alone" route.

Twelve months ago and a generation later I saw a rheumatology Fellow. He asked about the asymmetry of my face. (News to me!) He and the rheumatologist conferred and sent me for a CT scan. A few weeks later I got a bad news call from my specialist - actually the first call ever. He said that my jaw joint has severe degeneration on one side and moderate degeneration on the other.

So what do you do with that kind of news? I started with my dentist. He gave me a referral to an expert dental surgeon. It practically goes without saying that this surgeon has a waiting list. They told me it would take eight months, but actually by the time I see him a year will have passed.

In the meantime I saw another dentist who used to be a surgeon. He said that my function is better than he would have thought from the scan. Since the jaw joint deteriorates slowly over the years it can adjust to gradual changes and using a night guard for protection would likely be helpful. He also advised me not to eat apples or other large fruits or big sandwiches on hard crusty buns. 

Can't eat this apple no matter what happens

Two RA friends with jaw trouble have had special physiotherapy. Tense muscles contributed to their problems and now they can at least open their mouths wider. Another friend with pain issues was seen recently in group therapy at a pain clinic. Half of the people in her group had jaw problems, so it's a piece of luck that so far I don't see that happening.

My jaw does cause problems. The worst happen after a day in meetings or at a conference. All of that extra stress and extra smiling makes my jaw sore enough to cause pain and headaches. 

You'd think smiling would not put you in the penalty box

TMJ Disorders - NIH

Merck Manuals TMJ

Can orthodontic relapse be blamed on the temporomandibular joint?  Gives some background

Saturday, 29 November 2014

Patient Preference: Not Always What It Seems

There have been suggestions that we look at the NHS in the United Kingdom for ideas that will improve health care in Canada. I've been told to look at The King's Fund as a source of good directions for goals to help in becoming an engaged patient and for ideas that we could use in North America. Even as I was hearing this I had a recollection of a research paper that I had read in the past and that did not impress me at all.

Here's the link. It's called "Patient Preferences Matter: Stop the Silent Misdiagnosis". I thought this sounded very positive. The patient voice would be heard and their choices would be respected.

But after I read the paper I felt uneasy and unconvinced that this whole plan would be good for patients. The example used to demonstrate the point was 'Susan'. She's 78, has a family history of breast cancer and a heart condition. After a mastectomy which showed clear evidence of breast cancer she talks to a friend who did not have surgery. She elected to slow the cancer with hormones. Susan is sad, and had she but known of the 'no treatment' option would have chosen it. This is called 'preference misdiagnosis' and of course no one knows how prevalent it is because it would be hard to measure.

breast cancer from

The suggestion in the paper is that the doctors of the NHS should be better informed about patients preferences in a general way through surveys and should  present all of the options.

The power that doctors have is very subtle. If my Dr. recommended treatment vs. no treatment and gave me the odds that would inform my choice I would  listen carefully. But the doctor has power in the presentation. We pick up cues in person to person exchanges. The suggestion of no treatment can easily be taken as a recommendation, and we can't all ask our doctors "What would you suggest for your mother?"

It's easy for the patient to tell what response is most desired and to be influenced by the choices the doctor presents. The aim is "Giving the patients what they would want if they were fully informed" But the underlying idea that this is an opportunity for the NHS to save billions of pounds seems as though it should be out of place in a discussion about patient preference.

Julie's opinion:
I have read this ridiculous article before and wondered what word games they were playing.  It sounded to me like they were encouraging people Not to seek professional healthcare and that the patient's "personal preference" should be for the good of the general economy - not the patient.  The conclusions are ridiculous in my opinion.

Gail's opinion

"I really think it’s vitally important that doctors do give us all the information so that we can be involved in the treatment choices. I would never, for example, blindly let a GP/Consultant prescribe me a course of treatment without at least doing my own research and knowing all the ins and outs first. I think part of this is about doctors realizing that our say in our treatment is vitally important, and ensuring we have all the medical knowledge we need to understand why a treatment might be the best for us, not just to be told that they are going to do this and that’s all there is to it.
We need all the options, not just the cheapest or easiest for them to accomplish."

The final point the article made was about the pluses of  getting patients involved, particularly the one that if patients knew all the choices they would be less inclined to have aggressive treatment and the NHS in the UK would save a bundle of money.

They imagine lots of people in their 70s and 80s saying "No surgery, radiation, chemo etc for me. I'll likely die of something else first""

My friend's mom is an equivocal example: For her it worked fine - she is a notable exception. Breast cancer at 83. Dr did lumpectomy - told daughter it was malignant but in view of her age he would not suggest radiation or chemo. He told his patient (her mom) they got it all. The Mom thought she ducked it and did not believe it when her daughter said it was malignant.

Now, 20 years later, she is 103 and still lives on her own. Lucky it was a very slow growing cancer and the lie to the patient had no ill effects.

Arthritis Affects More Than Your Body

In the post about "Changing Shoes" Dr. Backman showed how that image came to symbolize what we've lost with inflammatory arthritis.

That led me to think of writing a post about the psychosocial aspects of living with Rheumatoid Arthritis, only to realize that this is a topic for a book, not a blog post. Still, not starting at all is accepting defeat too soon. 

Here's a relevant paper that I found among the first results of a search - Arthritis and Pain. Psychosocial aspects in the management of arthritis pain. It's not new, but when was the last time you saw anything happen fast in arthritis, with the exception of flares? The study is a perfect follow up to the shoes metaphor since Dr. Backman wrote this paper too.

To start with a definition and a direct quote from the paper:
"psychosocial factors refer to two dimensions of experience: the psychological (cognitive, affective) and social (interacting with others, engaging in life activities)".

The impacts that arthritis has can be seen in all parts of our lives, but pain is a huge topic that we are not able to ignore. It can result in what used to be small tasks, like getting dressed or washing your hair, becoming more difficult. Many activities start to take more thought and effort. 

Pain can also be difficult to predict or explain when others can't see it. You can look fine but it gets more difficult to make plans and commitments. It takes a toll on your self esteem too when pain is physically and emotionally exhausting and overwhelming.

Arthritis has impacts on our families and on our communities too. It was a huge change to my family when I was suddenly too tired and sick to be consistent in what I was able to do as a mom. I know it had an effect on my children.

With my husband, I worry. I saw the toll it took on my Dad and my father in law when they had to assume the role of caregiver when both my mother in law and my own Mom had health issues late in life.

The bulk of the cleaning and shopping fall to him now, and when I was too tired to socialize after working a full week, he also missed many get-togethers.

It's a balancing act

In my work life the stress was more a pressure to achieve results that it was physical, but that was in the job I found after it became evident that working full time in a bank took too much physical effort.

What many people find is that their whole lives change and dealing with illness and changes at the same time is very challenging.  I'll let Julie talk about some of the changes she has seen in her life.

"I think the biggest problem that I have socially is not being able to plan much in advance.  I don't know how I am going to feel on any certain day.  Sometimes, I will accept invitations with the understanding that I might not be able to make it depending on how good or bad I feel that day.
Clothing and shoes is also another consideration.  Trying to find something that looks kind of dressy and nice while wearing really clunky, orthopedic type shoes is a problem.
I try to never plan anything for the morning before 10:00 a.m.  It takes me that long to eat breakfast, take my medications, get dressed, etc.  I have to plan to go slow in the mornings - so no early morning socializing for me anymore.
When younger, I used to be much more sociable, but I have to limit the socializing  now.
I think it is all about knowing your limitations and accepting them".

Julie's outdoor cat, Grover

Friday, 28 November 2014

Changing Shoes: The Impact of Arthritis on Self Identity and Roles

Dr. Catharine Backman is a Professor and Head of Department of Occupational Science and Occupational Therapy at the University of British Columbia and a research scientist at the Arthritis Research Centre. She got the biggest response on the #eROAR twitter stream talking about her research on ways arthritis can change your self-identity.

Sam Bradd's graphic depiction of Dr. Backman's talk

Dr. Backman has done two studies about self identity and role changes, and said the most powerful example of the loss of self was the shoe metaphor. "We lead storied lives and the narratives and metaphors we use help us and others to make sense of our experiences."

"Changing shoes" represents not only a physical adjustment to accommodate pain, but also part of an internal process of reshaping identity. It is a very constant symbol of loss of professional self, stylish self, working self. Women eventually "gave up" their shoes and found a new sense of self or an identity no longer represented by the old shoes"

One of the contributors said that if you were more sedate and always wore granny shoes this issue may not turn your life around, but I don't know anyone under 50 who feels like that. When I went to a shoe store looking for style and comfort at the onset of arthritis, and they showed me the granny shoes I almost walked out (almost cried is actually more accurate). I ended up with green leather lace up boots and that helped.

These shoes are not cool. Will never buy shoes like these

Part of your life is gone, it's an internal process of reshaping identity symbolized by shoes.

.@cath_back at : how can the experience of living with change how people view themselves?

Important to share stories of how people came to transition to new identity with  @arthritis_UBC

"Flat shoes meant pants and never wearing life became different...after a few years RA just wasn't getting better"

Experiencing - a transition story: Giving up steel-toed boots = giving up the job. Flat shoes = never wearing dresses   ARC

Very true! @anetto: Shoes is a transition story, and it's not a transition people want.

For women: the type of shoe worn mirrors the life being lived> high powered work/ special occasions all accompanied by elegant shoes.

Metaphor of changing shoes represents many losses occurring as part of living with  

@Arthritis_UBC @Bonnycastle @nxtstop1 @cath_back Finding like minded people a big help. They're in mourning too for cool shoes

Past blog post of my own about shoes and life changes 

@Bonnycastle @nxtstop1 huge adjustments to 'who I am' - @cath_back suggests finding like-minded people via online groups/blogs could help

You all just gave me my next blog post idea. I have so many pretty shoes mourning in my closet! Along with outfits. My closet cries! @RareCandace

@Bonnycastle @Arthritis_UBC  Oh how wonderful ~ life : turning lemons into lemonade

MT @sarahlance: @nxtstop1 @maryadevera I have arthritis & plan 2 hike again. worry re perception we get as person w/RA,stereotyped...

Reading your stories makes me glad I can still look like I'm in college, so flip flops, flats, boat shoes. I'm very "Miami"

@AfternoonNapper: MT Oh, ladies... this has been a HUGE thing for me. Would love to discuss. In a meeting right now though.

I spy a discussion about shoes. My inner fashion diva gushes. I had to give up heels after DX. Too dangerous/painful! @RareCandace

Putting old shoes away/giving to charity carries great meaning to 'Who I am' - transitioning to new identity with

Not always a bad news story, people find new shoes, new identity, new role, including advocate  @maryadevera

Shoes are part of our foundation. Changing is difficult-who am I now?.

Dr Backman's research about Changing Shoes really resonated. Felt so much "less" at professional meetings in ugly shoes

Changing shoes...represent profound loss of sense of self in rheumatoid arthritis

Help seeking process. It's so hard to have to ask for help. It is part of identity change, along with shoes me

@nxtstop1 Yes, agree. My shoes are very ugly and it was (and still is) an issue though less now

Issue of shoes and arthritis: uh oh.... my issue :( have to wear low heel shoes,try to make stylish (gone are the stiletto days.. lol)   @nxtstop1

What do shoes and family dinners have in common? Metaphors in rheumatoid arthritis patient experiences.

Implications of the research:
from Dr Backman's slide.
"Appreciating how seemingly small changes carry great meaning with regard to one's identity may foster more effective patient-provider communication and client centered practice.

Yes, shoes are a big deal to many! but more importantly, they represent some poignant losses that accompany chronic illness".

I can see this happening myself in some relatives. My mother in law just could not give up her impractical shoes after she became ill. I've had a long time to change my own life and adjust to what I still call ugly shoes. It can't be done overnight, and yet we were all very impatient when she stubbornly refused to change. Not many women want to wear "sensible shoes" and, as Preston pointed out later in the day, neither do men.

Thursday, 27 November 2014

Coping Through Adapting: Not Quite the Same as Doing Well

A few years ago my rheumatologist used a computerized patient reporting system on a trial basis. Patients were asked to fill in a detailed questionnaire at home the day before their appointment. I'm sure it was useful for the doctor to see a graph of people's progress over a period of years. I was very enthusiastic to see my chart take shape as time went on and to be able to track the changes in my reported health. The link to the chart is similar to the one I used but not the same.

It took a while for me to notice how little change there was in some areas. With rheumatoid arthritis (RA) I could see changes in pain, sore and swollen joints, and activity levels of  RA. What didn't change was the global assessment and I came to realize that it would take an amazingly good or a shatteringly bad result to change that marker at all.

Known as a homunculus. RA version. Hands and feet exaggerated because of numbers of joints affected

The other area that did not seem sensitive was the health related quality of life (QOL or HRQOL). Over my whole time in this reporting system there was no significant change. Minor variations may have been connected with how literally I read the questions.

There were 25 statements to determine QOL which were rated on this scale:
Sample question. I can do chores such as vacuuming and yardwork...
Without any difficulty
With some difficulty
With much difficulty
Unable to do
Not Applicable

There are many things that you can do more easily by adapting your activities, products or the methods that you use to do things.

Some examples of this:
Opening car doors - Just shop for a car that has doors you can open.
Turning faucets off and on - Buy a lever-style tap
Cut your meat - Use a sharp or right angled knife
Lift a full glass or cup to your mouth - get lightweight or plastic glasses and cups
Open a new milk carton - Stop buying milk in cartons
Dress yourself including laces and buttons - Fewer buttons, ditch the Spanx, stop wearing tight pants where you have to force the zipper up and the button fights you, try velcro-closing shoes.

I'm sure you see where this is going. By making a myriad of changes in your life and habits, it looks as though you are maintaining you QOL. In a sense you are maintaining it because change is not the same as loss, but these changes make you feel that control of your life is going to the disease. None of the lifestyle alterations feel positive when you have no choice but to adapt.

Using a working splint helps me to cope with typing for a long time

So on the chart your condition looks stable, but in truth you are changing your habits in so many ways and your life is so affected by RA that you barely recognize it anymore. I say the measurement process is flawed.

Another item missing from this system was a measure of fatigue, which is very common in autoimmune diseases. It makes you wonder about the extent of patient input into these patient reported outcomes. Who is better than a patient to describe the outcomes and issues they deal with daily?

One article I found very interesting was titled Patient participation in psoriasis and psoriatic arthritis outcome research
by Maarten de Wit et al. Prior to the 2013 GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) annual meeting a literature review was done to confirm levels of patient involvement in previous outcome level development. They found 63 articles related to 26 outcome measures and only one described any patient involvement in determining outcome measures. This 2013 meeting was the first time there was an official patient presence at the meeting and it was described as "an important first step into incorporating their voice into GRAPPA's research agenda".

Amazing what literature reviews can tell you. I'll be looking for more, since it is hard to believe that psoriatic arthritis is the only disease area where the patient voice is missing in something as basic as outcome measures.

There's another post on this topic Dropping the Ball on Patient Outcomes?