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.

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.

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.

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 World.....how 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."

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.

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