Two Inspiring Moms Day 7

At the heart of the experience of chronic disease, including caregivers as well as patients, there are more similarities than differences. Being included in care decisions, becoming engaged with the heath care system, worrying about clinical trials - all of these are areas where any of us might become involved in the future.

The blog I am featuring is by Erin Moore and is called 66roses. The link is to her blog post about MedicineX, which is also happening this week, and it made me think about powerlessness and hope. She mentions Paul Bataldon saying that hope is the primary motivator for co-production, and talks about Collaborative Chronic Care Networks (C3N) and helping others to find hope and move out of powerlessness. She's doing a workshop at MedX and this post is a great introduction.

A detail from Erin Moore's Walking Gallery jacket, showing the reason she is passionate about Cystic Fibrosis (65 Roses)

Among other great observations she has made in past posts: 

"Patients and caregivers are asked to give up time in their already full and complicated schedules to help out ...healthcare professionals. Meaningful engagement would be asking patients to be a part of the team, recognizing the value that they bring to the table, and showing them that you appreciate them through respect and compensation."

And this post, where Erin Moore and her 5 year old son talk about whether he will enter a research study, which led to her wondering about the idea of making the IRB (document that explains the research and the risks) information accessible to the children in studies. What a brilliant idea!

And that led me to think further about Dr Joyce Lee and her great Personal Design Experiment. This link goes to her slideshow showing the way she became convinced that design thinking would improve healthcare. We also can see the video her 6 year old son made to show his teachers how to use an epi-pen.

 Joyce Lee's son did his own illustrations

He has allergies that can lead to anaphylactic shock so his teachers need to know how to use it. After seeing his video I think we all get it.

You can find great bloggers in social media. Time spent online can have a great payback, and no sooner do you learn something new than you pass it on to others.

It was great through the week to read blog posts from so many bloggers I did not know, as well as old friends whose blogs I read often. Now that we've all met, I'd say let's follow Rick's example and try to comment more often. He's a Comment Star. Nothing makes bloggers happier than comments. 

My Sjogren's Syndrome Onset Story

Thinking back, I remember when I started to have eye problems about 10 years ago. When I got home from work my eyes felt so sore that I would have to lie down and keep my eyes shut for 20 to 30 minutes. When I opened them they would feel good for a while but overall just kept getting worse. 

Eyes half shut

Sunlight made me squint till my eyes were almost shut, and I started to find myself was sitting in front of my computer screen with my eyes half shut so that I could manage to keep on reading. This was a poor solution so I started to go to bed really early since my eyes hurt when I watched TV, read or used my computer. With RA (Rheumatoid Arthritis) that meant almost all of the things I did outside of work were causing problems.

Working was also getting difficult. I heard that daylight bulbs in office fixtures were better for eyes, so I had my neon lights changed. The air conditioning was a problem because of the airflow so I turned off the AC outlet over my desk.

It was getting frustrating that all these changes actually made no lasting difference. Finally I went to see my trusted optometrist, who told me I had dry eye. He gave me eye drops but using them as often as I needed to was a nuisance, and did not help enough.

Dry eye and dry mouth

It will surprise no one on social media that I started to google symptoms of health problems connected with dry eye, and when I found the term Sjogren's Syndrome it seemed that I had a match, especially when I found that 25% or more of people with RA developed Sjogren's Syndrome.

The Sjogren's community that my searches led me to is called Sjogren's World. It is a large and strong community with 'expert patients' as moderators. There must be 250,000 posts and replies and through searching and asking questions I soon had a lot of answers.

Finally I was able to see my rheumatologist. When I asked him if I might have Sjogren's, I think he said that half of his patients had Sjogren's. There's a clinic where I live that has a very long waiting list; He said that he could send me there if I wanted to see a lot of doctors, but put that way, I did not want to sound needy so I said no.

When I asked if I could try a prescription drug to stimulate more saliva because of dry mouth and choking he agreed it was worth a try, and I got a referral to an opthalmologist as well. Through reading and talking to a friend I had the name of a doctor who specializes in dry eye, so that's the doctor who finally helped me with the eye problems.

Eye drops and gels. Ready for dryness!

That was actually a fast diagnosis. It was less than a year after I noticed the problem that I had a name for it. Typically people see 3 doctors and it takes 2 1/2 years to find out you have it. 

I've written many posts about Sjogren's Syndrome. I am now a board member of The Sjogren's Society of Canada and attend the conferences regularly. This post titled "immune System Gone Wild" was among the firstof the series and has some hints about management if you want to know more. Most of the treatments are not cures; managing symptoms is often the only choice.

There are a few prescription medications which help, but it's like other autoimmune diseases and has no cure.

Wikimedia Commons Rue des Pyrenees

Who Educates Patients? Day 5, Wildcard 3

When I first got access to the internet and started to search for knowledge about my rheumatoid arthritis (RA) I used to read the CME (Continuing Medical Education) courses that were available online for doctors. Those courses were great ways to learn. Any words I was unfamiliar with I soon picked up through googling definitions.

When I found one written by my own doctor I was pleased to have an insight into the way he thought about treatment. It helped to know that he was fully aware of the recent research in the field, and did not reject it. 

Eventually that rich field of CMEs dried up, in part because they were sponsored by pharma, and the medical profession became more aware of the appearance of conflict.

My primary care doctor has many ways to learn more - journals, communications from the health care system, colleagues, conferences and through taking courses during the year. Specialists have even more avenues. Many work in academic institutions with medical libraries and good access to medical journals.

                          Might be an interesting journal 

Patients who want to read original research papers quickly find that pay walls stand in their way, even if the research was funded through our taxes. (Definition of paywall: System that prevents internet users from accessing webpage content without payment.)

This is what a paywall looks like (Elsevier)

How does patient centered care fit into this picture? This is the new phrase used to describe the more modern approach to health.

Patient centeredness is defined as:

Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. ²

Do many patients reading this feel that their education about health choices can be adequately covered in a 10 to 12 minute appointment? Possibly yes for a simple sore throat, but I doubt many of us rush to the doctor or clinic for minor problems that seem familiar to us.

To use information that we find online, we non-professional users of information are thought of as vulnerable patients who need guidance from professionals, and yet the professionals don't have time to guide us, even assuming that they are familiar enough with online information sources to help patients find their way to the best online information. Social media is not yet a skill that is common in the doctor's offices I am sitting in.

I think many patients do a great job of learning from one another and of using their intelligence to work their way through complex problems while they gain health and digital literacy. That is a skill though, and to suddenly learn all that you need to know when you are also sick and dealing with the very complex balancing act that is your life with illness is hard to do.

To get to the point: Patients need ways to learn. The health care system is not simple and a lot of people could make good headway in learning if they had a little push in the right direction and some encouragement.

Chronic disease patients are pushed to the forefront in this. They've had a long time to learn and observe the realities of care. With chronic disease it's a lot like Groundhog Day, the movie. Every day you wake up and the problems present themselves, and everyday you need to deal with them. You get used to it, and then go on to share what you've learned with other patients.

This is the logo from Rheumatoid Awareness Day. No surprise it is a groundhog

What I'm calling for is better access to information, online learning for patients in a coherent course of study, and  conferences so that we can learn, hear new ideas, make connections and be able to join the team in healthcare. We're the largest stakeholders and we should have input into the decisions that affect us!

Not to mention that the money comes from us too - the patients and the public.

Empty wallet

As ePatient Dave says so often, "Nothing about us, without us."

Five Tips For Dealing With Chronic Disease

1. RA helped me to develop a sense of optimism

When my health changed for the worse I became depressed about pain and fatigue, and was even more stressed and unhappy when I got a diagnosis of Rheumatoid Arthritis (RA).  I remember clearly that it was summer, and I was told to stay out of the sun because of my medication.

For some reason, my mind went back to my mother - she used to enter contests at one point when we were kids. I thought I'd try this home made solution! I started to enter and once I got started it was great to be looking forward to exciting calls, messages and letters. Gradually that positive feeling occurred more often.

I wish I could uncover the secret of being this happy

2. You need to be able to find things out and put things together.

When you suddenly find yourself with a health problem you have barely heard of, it is worth learning at least the basics about the illness and treatments. In the case of RA the process of getting effective care was too slow for me. If I had known more about the medications I would not have had to weigh the options and start a new treatment months later when I saw the doctor again. Being ready would have helped me to feel better sooner. Knowledge affects your outcomes.

Picture taken at Paul B. Helliwell Patient & Family Library at Toronto Western Hospital. You need to have your organs together

3. You need help

Hopefully not this level of help

Your primary care doctor is the person you see most often. Do the best you can to find someone who will work with you. With a chronic disease you can learn a lot and get help from other types of health professionals too.

With RA I really value the help of the rest of the team I have put together over the years - an Orthotist to make the orthotics that keep me from limping, an Occupational Therapist to tell me how to save my joints and find devices and ways to make life easier and a Physiotherapist to oversee the physical areas that the rheumatologist never seems to mention.  In fact my physio cheered me on for years as I struggled with disatisfaction. It really helps when someone keeps saying "You're doing great."

4. You have to be persistent to get good treatment

I always hope for a great treatment that will work fast - like a bolt of lightning

Good treatment is not likely to find you. You have to search it out. If your first  doctor is wonderful, fine, but RA lasts a lifetime, so it's best to find a specialist you can trust, and also one who has up-to-date knowledge of treatments. Even if you want more conservative treatment at least the best doctors know which of the milder drugs are most likely to improve your health.

An example of persistence. My Doctor has to fill out this many forms to get people on a biologic drug.

5. You need support

They are holding each other up

Your family and friends (some of them anyway) will be good sources of help and support for you during your ups and downs with RA, but I'd say there's no substitute for a support group. At first I was unable to find an in-person group; now I have discovered one through volunteering for arthritis related causes.

My support group of choice is online. I've been in the same one for 15 years and we have grown very close. When you're worried and don't want to make your friends and family even more anxious the best people to talk to are others who have been through it before. They are invaluable to help you get through tough times.

On Twitter you can find people with RA using #rheum as a hashtag, or you can go beyond just talking to others who match your illness and try to make help others and change things that are wrong or less than perfect in health care. Helping others is one of the best ways for people with chronic disease to start going beyond their illness. Do you know the real secret of the self management courses you see?  It's in just deciding to take it - that's a first step.

Once you join they teach you how to set goals that will work for you. Even if you decide not to set a goal some weeks it still does you good because you are deciding what you want to do, not your disease. So there is my theory of self-management!

To the Newly Diagnosed Day 3

It's been thirty years since I finally found out what was wrong with my health, and the news that I had rheumatoid arthritis (RA) was devastating to me. Despite that, what I would most want to tell people with a new diagnosis of a chronic disease is "It gets better." 

Not to say that your diagnosis will go away, but it is possible to develop strategies to live with it and to feel happy and successful. Your life won't be what you expected of course, but that's not uncommon no matter how healthy you may be.

Just this week I saw the chart below posted by Cheryl Koehn on Twitter, with the comment "Knowing about this would have helped me at RA diagnosis."

She called it a great summary of the stages of grief in death, arthritis or other illnesses. I agree with that, though I did not believe in the up-side of the chart for many years.

When Cheryl developed RA she was a former Olympic Volleyball player. I imagine her plans for the life she expected were totally derailed, but she continues to be an achiever in many advocacy and awareness areas, with a book called Rheumatoid Arthritis: Plan To Win and also as the President and Founder of Arthritis Consumer Experts which publishes the Joint Health newsletter every month. 

Coincidentally I also saw Lene Andersen's film, "Live Bold, Live Now" this week at Cure Arthritis. She considered herself a "worst-case scenario" because of the consequences of her Juvenile Arthritis and RA. Now she is passionate about sharing her story to show that it is possible to live a happy life despite arthritis. She is now a photographer an author working on her second book at the same time as being the lead writer on the Health Central RA site.  

Both Lene and Cheryl are great examples of the Loss Adjustment side of Cheryl's diagram, the up side that I couldn't imagine when I felt so much isolation and loss of power due to my "chronic life." 

For me it was a great online support group, solid encouragement from people on my care team, and social media that made a big difference in my life and extended my horizons. 

Here's a big plus for people with a new diagnosis - the treatments for RA are much better now than they used to be. Below you can see my Walking Gallery jacket highlighting problems in getting a diagnosis, and the first treatment suggested to me. It's written under the aspirin bottle "Take 12 aspirin a day and come back in 3 months." (Hint: It didn't work)

Walking Gallery Jacket

My advice to you is to set new goals, do whatever you can to help yourself adjust to your new reality and try to have fun. It's been great reading all of the other blogs on #RABlogWeek.

RA Fatigue: How Does It Feel? Day 2

Fatigue is a constant topic in support groups or gatherings of people with Rheumatoid Arthritis (RA). Here's what people in my support group have been saying lately.

Joy has been having a tough time:

Just want to ask - can you tell me exactly how you all feel when the fatigue hits really hard? I feel as if my legs won't carry me about, feel so tired just want to sleep all the  time. Have a headache from hell, body just feels like its giving in.

Sorry to moan but this is the worst I felt, if it is the fatigue

Advice from Jill

That is exactly how I feel apart from the headache but then I’m not prone to them. I describe  it as feeling like all my blood has been drained and I’m too tired to even lift a drink or take pills. I also feel like I want to sleep, a lot and then I still feel tired. My advice is to just rest as much as you can, do something that you have to put no effort at all into, fave films or a fave show are my go to for fatigue flares, as there’s no effort involved at all. Rest and baby yourself through it and sleep when you need to, and keep hydrated.

If we were cats people would say, "How cute"

Everyone is always happy to hear from Julie

I am sorry you are now suffering with that AWFUL fatigue!!  I had a bad spell of fatigue last week for about 5 days and really didn't want to do anything.  If it weren't for John, I probably would have just gone to bed, but it is probably a good thing for me that I feel I have to do some things that have to be done regardless of how I feel.

 

This sounds awful but when I have that awful fatigue, I feel like I think I must have some dreadful blood disease that is turning my blood into some kind of mush.  I felt so bad last week that I told John that maybe I ought to see the hematologist again and have her run her 17 blood tests.  She did that twice before and all she could find was "anemia of chronic disease".  I am going to discuss seeing her again next time I see my Internist.

Yes, but I might not get better

Mary weighs in

It really sucks doesn’t it?! For me, this unbelievable fatigue hits, I just can’t fight it, I have to lay down. I start to feel nauseated then I start to hurt all over, I can be looking at the TV but not really getting what’s on, like I can’t even think and all I can do is lay down and sleep. A good nap does help, for a little while. One problem though is I can not get comfortable! I hate it when I’m so tired and then can’t get to sleep because no matter how I lay or sit just not comfortable. Martin says he thinks I don’t fall asleep as much as collapse from exhaustion. Fortunately I don’t get headaches very often. You are not moaning, Joy. This is our life. It is what we deal with. I feel one of the most frustrating things is people just not understanding. I know some think I am lazy, don’t care, am anti social when it couldn’t be farther from the truth. I used to be one of the most active people you’d ever meet! I worked 40 plus hours a week, would go to the gym, take care of the house and girls, bowling league 2-3 times a week, go out with girlfriends until late at night and get up after a couple hour of sleep and go go go again no problem! Now, I don’t know how I ever did it all! One day at a time. Now, if I am out and about one day the next day I’m pretty much worthless. Ugh!

Joy at  least feels that someone understands

Thanks for letting me know how the fatigue affects you .. I know what you mean when you say you are looking at the TV but not really taking in what's on .I worry in case

people think I am lazy .... You are right when you say people don't understand ....but as you say this is our life .Like you I used to be very outgoing but that's not going to happen again now you take care Mary.

I wish spinach helped

Back to me:

I can't say I have better answers. I see a lot of research papers where they tell you that exercise will help. Just don't say that to everyone with RA. It's not a 'one size fits all' equation. Many do their best to exercise. It's tough when the result of exercise is often increased fatigue for days after.

One point to remember is that as you age you lose muscle mass, so at the very least try to develop your muscles by doing as much as you can. 

Here is a recent paper advising cognitive behavioural therapy.

Honestly this is the one that makes the most sense to me: Physical Function Continues To Improve When Clinical Remission is Sustained in RA Patients

Yay remission!


Link to RA Blog Week Day 2 for the rest of the blogs

A Day In The Life. RA Support Group Edition Day 1

I crowd sourced some of my day in the life. Support groups are wonderful.

Polly has ideas  for a demo film:

"Someone needs to make the virtual reality rheumatoid arthritis experience - I've been wanting to do that for years.  A day in the life..from the lowest pain to highest and then add some gastro issues just for a few chuckles.."

Jill feels that her doctor does not appreciate the impact of RA: 

"I don’t think our doctors have any idea of the impact on our quality of life. We see them for such a short amount of time throughout the year and then it’s only enough time to deal with the immediate issues/concerns. I bet if we each sat down with our rheumy and talked them through a week of our lives they’d soon see things in a different light." 

Julie and John:

"We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at least one serving of a fruit or vegetable and usually more with every meal.  I really don't think we surpass seven servings a day though.

I have read that 65 to 75 is "Young" old,  75 to 85 is "Old" and 85 plus years is "Very" old."

Polly is single now:

"I feel invisible a lot of the time.  I think you don’t get much attention if you're solo."

Rosie wants a place to relax.

"Sometimes I sat in the pavilion and knitted.  I haven't found a body of water to visit but I am going to try and find one so there will be a place I can go by myself where I don't have to worry about catching anything from anyone!"

Julie has a soft spot for animals

"We were feeding a awful-looking very young raccoon that we felt sorry for.  He looked so sickly and after several days fell over in the yard.  John picked him up in a towel and put him in a box and then called animal control.  They came out and took the poor little raccoon and the officer told us that distemper was rampant in raccoon's in the area.  We both shed a tear over that sick raccoon. Thankfully, our pets are vaccinated against distemper, but the feral cats we feed aren't vaccinated against anything and now we are worried about them.  Always something to worry about."

I don't have a soft spot for all animals

At our house we are fighting the groundhog wars. The hole is blocked off now. We might have left him alone but he wanted to live right near the back door, next to the foundation.

Just sitting here I see reminders of RA in front of me, on my desktop, splints in the nightstand.

Pills under the monitor

Jills ring splints picture on my desktop

Adapted pens always near me

Resting splint worn nightly

Right angled knife - so easy for chopping

Empower Yourself: 9th Annual Sjogren's Society of Canada Conference: Dr Ava Wu, Part 3

We were excited to see Dr. Ava Wu at our conference for the first time. She is a Professor and Researcher in the Department of Orofacial Services and has seen thousands of patients at the Sjogren's Clinic at the University of California, San Francisco where she is the Director. Dr. Wu is also the co-author (with Dr. Troy E. Daniels, DDS, MS) of Chapter 16, "The Dry Mouth" in the newest "The Sjogren's Book" - Fourth Edition.  She sees patients as part of the International Sjogren's Syndrome Registry (International Collaborative Clinical Alliance (SICCA))

Dr. Ava Wu, DDS

She demonstrated very graphically how little saliva is produced by a patient with Primary Sjogren's Syndrome. 

Dry mouth is more common in women than in men. This is the definition Dr. Wu used:  

"the sensation of oral dryness begins when unstimulated salivary flow decreases from 40-50% of the baseline flow rate." Dawes, Journal of Dental Research

Some of her suggestions were new to me, like adding flavoured oils such as mango, peppermint or lime flavoured olive oil, or omega 3 or flaxseed oil to drinking water to ease the dryness. That fits in with advice from my dental hygienist to swish a little olive oil around in my mouth when it is uncomfortably dry. I'm always happy to gain a new strategy. 

She stressed keeping gums healthy, and suggested onlays rather than crowns because less of the tooth is removed. It's more conservative dental care.
Dr Wu also suggested using a warm water baking soda and salt water rinse if you have discomfort in your oral cavity. 

Here's a picture showing the difference between an onlay and a crown:

She mentioned a prescription product called NeutraSal that comes in a powder form and is dissolved in normal tap water. It is a supersaturated calcium phosphate rinse that may be helpful for discomfort relief as well. 

I followed her suggestions for fluoride varnish for your teeth once a year at the dentist, and a mouth guard at night. If you use Prevident you should not rinse after you spit it out. Using MI Paste as a remineralizing agent is also recommended - That was good news because I currently use it on my teeth under my night guard.

Dr Wu has also made a video that gives surgeons tips on doing a salivary gland biopsy.

To increase the pH in your mouth you can use a bicarbonate mouth rinse. I'm sorry I could not write fast enough to get Dr. Wu's instructions. This type of rinse would be good to use after you eat acidic food.

Looking Forward to MedX

Last year I was an ePatient Delegate to MedX; once it was over I was able to call myself an ePatient Scholar. 

Being there was an experience that changed me. Even though I made some super-klutzy moves that I will keep to myself, I have no regrets. Meeting so many Twitter friends and powerful patients who speak my language was an irresistible draw.

This year I won't be there, so you might ask, why am I looking forward to MedX? 

I'll be trying to watch on the livestream, but on Saturday I'll be at an all-day session of a Citizen Advisory Group, and on Sunday will be in a participatory meeting ensuring that elderly Canadians and their caregivers will have their voices heard.

Events like these were not on my calendar prior to Medicine X. It changed the way I look at the health care system and the role of patients in it. It also affected my confidence in the ability of patients, (including myself) to be involved in decisions about health care.

MedX is more than just a three day experience for the patients who attend - they all have work to do to prepare themselves. Giving an Ignite talk is more than just standing up and talking for five minutes. The presenters work on the Ignite talk all summer - they consult, prepare and practice.

The IDEO Design Challenge showed a different way to learn and think - reading books on Design Thinking, watching videos, and preparing the ideas - the "How might we..." statements that the prototypes are based on.

The ePatients on the production track work hard too - blogging, tweeting and publicizing the event before, during and after the conference. In addition there were other team building projects so that by the time  ePatient Delegates arrive at MedX they feel like part of a team.

You might wonder how this connects to looking forward to this year's MedX for me when I will miss so much of it?

The reason is that this process, the work that the ePatients do means that when the candidates arrive at Medicine X they are prepared - equipped for the conference, enthusiastic and ready to be changed.

Seeding like a dandelion (Sydney, Australia)

And that's what I look forward. Seeing more patient advocates develop larger profiles as coming year unfolds, seeing the connections they make help their work grow and spread, seeing more people who are empowered and confident of their abilities to change the way things work in healthcare. They're also ready to inspire others, to encourage them to go to MedX next year and create more change.

ePatients don't always just pop up out of nowhere - they need a little sunshine to grow, and that's what MedX is good at, so good luck and have fun to all of the new ePatient Delegates!

Connections. MedX 2012 from @symplur.