Zombie Cookies, Vampire Stats and Trolls

You never know what you'll see when you're blogging and reading what others say online. Just in time for Halloween I discovered that I am probably picking up zombie cookies as I navigate the web. They are flash cookies placed on your computer as you visit websites. Unlike the usual ones that you can get rid of when you clear your cache they persist and work across browsers to remember you on websites or ban you from a site even after your cookies are cleared. 

Halloweendevilishdelights.blogspot.com      Zombie Cookies

They hide in your Adobe flash and actually come back to life after you delete them. 

Another thing I keep finding in my blog statistics are vampirestats. You see a url that seems to refer people to your blog. This makes it look as though more people have visited. Beware - they want your clicks. When you go to their site to see who they are, then they get what they want. I don't know how to block them - one person said that when a blog is established they drop off.

I've been saving the zombies and vampires and waiting for Halloween. Happily there are no horror movie diseases among my diagnoses so the only thing left that fits a Halloween post is the trolls.

From Monywa  Trolls making soup

Trolls are those people who jump into your discussions and disrupt them. They may insult you and others. They may argue or say outrageous things just to get an emotional  response.  The advice given on many sites is "Don't Feed The Trolls"

So have a Happy Halloween and beware of what you find in your next door neighbour's yard. It could be out to get you.

I've Never Met a Couch Potato with RA

Recently at a session of an Arthritis Society course called "Living With Rheumatoid Arthritis" I heard an amazing statement. The physiotherapist who led the session said that in 20 years of seeing RA patients she hadn't ever met a Couch Potato with RA and went on to say that many of us with rheumatoid disease are type A personalities.

Couch potato and an 'A' type RA hero

She was saying that the beliefs we grew up with, such as "if you feel sick don't give in to it" and "you can do anything you set your mind to" may need to be changed when you develop a chronic illness. Feelings that make you "soldier on" and "push yourself through the pain" may help you get ahead when you're healthy but once you are ill, you need to listen to your body and take good care of yourself so that your health does not get worse.

This extra care for yourself can make you feel guilty and lazy when your body calls for rest. This is when you call on your communications skills and ask for help and understanding. The course leader also suggested a strategy for coping with worry. You save it up all week and worry from 7:00 pm to 8:00 pm every Wednesday night.

It's not easy to worry for an hour straight.

Another strategy for dealing with what you've lost is to do an assessment of your skills with the idea of finding which are transferable to the new self that you will have to create. The self which you reinvent based on your new reality can be very different from the old, but the bedrock is the same.

Here's a link to a book "Positive Coping With Health Conditions" which you can read online as HTML or download as a 42MB PDF. It helps you to learn more about living better. It's a long journey with changes and losses along your road. Remember, stress management is a life skill that you can learn.

One of the adjustments you can make is to put yourself in the center of your life.  Another is giving yourself permission to be good to yourself. Guilt and worry make that hard, but remember our course leader. "I never met a couch potato with RA."

To read more from #RDBlogWeek...

*pictures copyright amckinnon

Self Management: Join The Team

When writing about patient engagement it so often sounds like there are many people out there supporting this effort. In reality there are brief encounters with doctors and their staff members involved in patient care. The rest of the "support" community" such as lab workers and many of the technicians who conduct tests, are so jaded and overworked that often I just feel 'processed'. They are also far more protective of my data than is logical, even telling me that it is illegal to give me info about myself ever because it belongs to the doctor.

I've been fortunate to have allied health professionals who are very encouraging and full of good advice. I owe a lot to physiotherapists, occupational therapists and orthotists.

Sometimes I wonder if it's possible to have a chronic disease and still be considered a member of the "worried well."

                                            Worried and well?

I found this PhD thesis "Capturing daily fluctuations, flare and self-management in Rheumatoid Arthritis: The patient perspective." written by Caroline Flurey.  It has been published as a book and is well worth reading.

There were interesting insights into the way patients look at their lives. One is the finding of "four different experiences of daily life with RA: 

1. Feeling Good
2. Taking Active Control
3. Keeping RA in its Place, and 
4. Struggling Through." (Mostly male)

The other was this description of flares"
"Two different flare-types have been identified: "Inflammatory Flare" (defined by pain and inflammation) and "Avalanche Flare (defined by the cascading effect of inflammatory symptoms, emotions and life events)." She has great insights and the paper also is a good resource to identify past research relating to daily patient struggles with Rheumatoid Disease.

                                        solar flare from nasa.gov

Speaking of struggles here's a look at what my friend Patty says about things that make her indignant:

"I got copies of all the tests and reports that the specialist is sending to my primary doctor.  Well, on the notes under General Appearance the hepatologist noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of RA can make you look sick. I'm sure I will mention this to him when I have my appointment.  I mean, there is another way of saying this, isn't there?"

                                        You don't look at all well

And here is her experience with feet:

"I know a lot of rheumatoid arthritis patients have a high tolerance level for pain. My foot Dr told me that RA'ers really can handle foot surgery. "You can tell who deals with pain everyday"  he said "normal people whine a lot about it". Guess we don't whine as much because we're used to it. Have you tried New Balance shoes? They're a godsend.  My podiatrist recommends them with my orthotics."

                                        Bare feet difficult with RA

Feet were the problem that led to my diagnosis of RA. The pain was too much to deal with for the long term so I chose surgery. Now I have had my forefoot (bones near the toes) reconstructed.

Though doctors don't go out of their way to use this term anymore , forefoot reconstruction  is considered "salvage surgery".  The heads of my metatarsal bones have been removed so I don't get the “walking on marbles” feeling anymore.

                                                              Try walking on these

With good orthotics and an ankle brace my gait looks pretty normal and my feet are comfortable.

  
Even having the above operation does not stop RA It can progress through the foot. It progresses to the midfoot and then to hindfoot. At the hindfoot it can seem that you have pain in the ankle but it is really lower down in the small bones below and in front of the ankle. They can be fused to prevent pain, or they may also fuse on their own.

It's well worth the struggle to gain knowledge and become comfortable with the correct terms to describe your symptoms. It helps you to join your care team.

Give the bird a carrot

As many countries try to control healthcare costs we will see more support for self-management, especially in patients with chronic disease. After all, we're living for long term with a problem that won't go away. We get tired of trips to the doctor and I'm sure the doctors get tired of us too. It's also easy to see that the way we manage our own health makes a big difference.

                                  Self Management ...then

Notice that Dr Chase has the answer for inflammatory diseases in addition to everything else.

When I googled "self management" and "chronic disease" the first result I got led me to the Stanford website and the "Better Choices, Better Health" program that they developed between 1996 and 2001. Their course they developed is used in the US, UK, Canada, Australia, Netherlands. It is not surprising that they are #1.

                                 Self management...Now

You can take their course on line or in person if it is offered in your area. It takes a day per week for 4 to 6 weeks.  One thing that is stressed in the courses is goal setting. Their aim is to give you a tool kit of skills that you can use to improve your health. 

Some of the apps I found online lately are enough to convert even a dedicated non-user. One project gives older people a virtual friend named Carmen who encourages them with personal feedback as they report their results in becoming more active. Carmen is a star!

Then I found Birds: The Stay Healthy or the Bird Dies version. You need to eat vegetables and exercise to keep your little friend alive. Maybe using apps is a better idea than I thought.

This study makes a good case for physical activity with Rheumatoid Disease if fun games don't tempt you as much as facts. 

My Past post on: Do It Yourself Management of Chronic Disease 

Disease Support for Patients

I talked to another patient last week after attending a “Living With Arthritis” program. The topic was access to helpful services and courses for people with Rheumatoid Arthritis (RA) – services like physiotherapy, occupational therapy, counselling and self management courses.

The course leader said that these services are accessible - and obviously we had found our way there. I said “That’s not exactly true. You’re assuming that doctors and rheumatologists mention these services and programs and/or send people to them for help”

Doctors are the one point of contact that all of us with RA have in common whether we are long term patients or newly diagnosed.  In my reality the doctors are too busy and these referrals are often missed or felt to be unnecessary. People who use what are called allied health services are usually savvy patients who find things out for themselves by searching, through peer to peer mentoring, or through referrals by exceptional doctors.  The newly diagnosed patients in the discussion agreed completely - they did not get those referrals.

As my new friend said “Patients don’t know what they don’t know, and they don’t find it out from the doctor.” Even a simple instruction such as “Contact the Arthritis Society for helpful programs” is often not given.

It would be great if there were a summary of services that 'may' be of use to patients with inflammatory arthritis (depending on need) as well as a short list of online sites where they would be unlikely to get bad advice.  If that existed it would at least give the doctors one simple uncomplicated message to deliver about the care that goes on when we're not seeing them. Isn't that the other 8,765 hours in the year?

There are clinics in the world where services of many types of professionals are delivered under one roof. Dr Irwin Lim from Sydney, Australia has such a clinic called BJC Health and he blogs as well so that's another resource where we can find advice and perspective. 

                                                                 Also in Sydney

One of the main benefits I noticed after seeing other team members like physios, nutritionists and therapists was that it seemed a lot less necessary to see a doctor so frequently. Perhaps that had something to do with my improved confidence that my actions were having good results.

In my first years after being diagnosed with RA I had a lot of anxiety. It's a relief that it has lifted and it's due in part to the encouragement of non-medical providers.

Click #rheum chat for a recap of some of the conversation from Sunday about access to care.

                                      RA is not good for your feet

Patient Stories About Generic Drugs

Like almost everyone else who uses medicines to improve or maintain their health, I take a large percentage of  generic drugs. Up until the last few weeks I have not noticed any difference in the effects of brand name vs generics.

                                           Generic drugs 

Unfortunately that is not the same for everyone, and now I am joining their ranks. One of the drugs I take recently just became a generic and I noticed a real difference quite quickly.

With most medication you judge the efficacy by a gradual change in the way you feel or by lab tests that indicate how well they are working in your body.  So many drugs that we take are preventive or work slowly on changing your system. With those you are unlikely to notice a difference. This new generic (Pilocarpine, brand name Salagen) is the only one I take that takes effect quickly and has a noticeable physical effect.

                                   Non-generic - see markings
My doctor wrote me a note and a new prescription that says "no substitutions". The insurance company says fine, if the doctor says I need the brand name they'll pay (and so will I of course) so that is lucky for me.

Neither the doctor nor the pharmacy mentioned reporting an adverse effect for this new generic. I was able to access the 32 page monograph that the new manufacturer supplied to Health Canada. They listed every paper about the drug from the past and talked about how the drug worked in trials compared to the brand name drug. They only tested the effects on 5 women. I guess I'm not like them.

Patty's Story:

"I am taking the generic Prevacid and I don't like the effects.  It upsets my stomach.  I stopped taking it.  I don't know which one would be easier on my digestion.  I don't think I ever got the brand name Prevacid though I do hear the acid reducers are hard of the gastro tract. 

I haven't been able to get Prevacid..still jumping thru hoops for that.  I'm not taking anything....just sort of po'd.  And not doing a thing about it.  I'm trying out the 2nd manufacturer but really not.   The pharmacist says if the Dr pre authorizes it, I can get it but he already did pre authorize it and I still was denied.  I am still waiting for approval on the Reclast....  I think they hope I break my hip or leg first. Then they'll approve it. 

                                                 Patty is angry in a non-threatening way

I'm just so mad....I don't know when the patient had to be their own doctor, secretary and insurance company to make sure you get the things you need."    

Julie's Story

"I am going to add my experience with the generic of Prevacid to Patty's reply.

I have Barrett's esophagus - thanks to use of NSAID's.  This is a pre-cancerous condition.  The doctor put me on Prevacid and it really helped.  At a follow-up endoscopy, he could barely see anything in my esophagus.

Well, my insurance company switched me to the generic of Prevacid - Lansoprazole.  I tried that for about a month and started having GERD symptoms.  After much confusion and doctor's visits, my insurance company agreed to pay for the Prevacid.  I started back on the Prevacid and things returned back to normal.  So no one can tell me that the generic works like the Brand name drug.  I had to get special permission from the Insurance Company to get them to pay for the Prevacid.  I told them that if they would rather pay for treatments for esophageal cancer instead of the correct medication, then that was their choice.  I have to get approved every year.

                                   Please approve my brand name drug

The Prevacid is EXPENSIVE!.  I don't quite understand why.  Another thing is that Prevacid is sold OTC - but the strength is 1/2 of that of the prescription medication.  I take 30 mg and the OTC is 15 mg.

Insurance companies are really getting screwy with what they will allow their patients to have."

Julie

Patty continued...
My Caresource insurance lady was telling me about Exact Care where you get your meds in an easy tear off pouch all tightly wrapped and inside a little cardboard box.  All your meds for the month are there...just tear them off as the day goes along...am pills, lunchtime,  afternoon, PM and evening, bedtime.  She asked would you be interested in that? Its so convenient.  I said no way....they're already substituting my meds when I pick them up at the pharmacy. Or switching manufacturers on me.  I want to see what I'm getting and I don't want a month of a med or two that they've subbed that may make me sick or is totally different than what I am used to.   

Ronny's Story:

"I guess you are proving my point.  The move is towards saving money first and finding healthy resolutions second. 

Many years ago it was predicted that this time would come.  Health would be the big commodity and everyone began positioning themselves to make out like bandits.  The health center I worked for had big meetings to discuss how they could position themselves to take advantage of the health boom and also baby boomer aging.  They got in early.

Now we have to fight to keep what little Social Security we have.  I was hoping I could afford more fruits and vegetables.  Guess that's not happening!"

                       AmusingPlanet.com Harrowgate Flower Show. Fruit&veg for Ronny

Here's another story about generics from CNNMoney - Are Generic Drugs Really The Same as Branded Drugs? . This story points out that although generics compared to the brand name they are not compared to one another so the relative usefulness is unknown.

This is the link to the original post called Generics: Not Just an Image Problem

Generics - It's More Than an Image Problem

There was an article called "Bad Rap on Generic Drugs" in the New York Times on October 5th, 2013. The article found a lot of skepticism about generics, not only among the poor and disadvantaged but also among doctors. In this study designed to "understand barriers to cost-effective medicine use," 50% of doctors who responded to a survey had "negative perceptions about the quality of generic drugs." Dr. William Shrank is the lead of 6 authors listed on the paper.  Three of the remaining five authors are employees of CVS Caremark which also provided a research grant for the study. 

The New York Times article by Katie Thomas went on to discuss other cases that might lead to a lack of faith in generic drugs including the Ranbaxy settlement, and FDA warnings about generic Wellbutrin. These are not the only generics that do not have the same effects as the original brands.

                                   

                                                     
Dr. Shrank is quoted in the article as the lead author of a paper titled "Patients' Perceptions of Generic Drugs".  One of the other authors is a Senior Director of Research at ExpressScripts. That paper details reasons that some groups gave for not wanting to use generic drugs as well as the ways socio-economic status affected purchasing behaviour.

In both Canada and the US generic drugs are required to have a bioequivalence of between 80% to 125% of the brand name "innovator" product. Bioequivalence means that the rate and extent of absorption of the generic drug will produce the same therapeutic effect as the brand name drug. That seems like a lot of flexibility to me.

In Canada we have seen recalls lately on 2 types birth control pills and it has been unclear where either was manufactured. It is not necessary for the drug company to disclose that information.

It should not take years of patient complaints to make a difference as it did with generic Wellbutrin.

I do not yet know about the situation in Canada but I was dismayed to find that in the USA generic drug companies do not share the same level of responsibility as the brand name manufacturer and do not have to update their labels when new risks emerge. In fact the Supreme Court in ruling in 2011 says the rules are different for generic drug manufacturers. 

                                 Justice Sotomayor. WikimediaCommons

Justice Sonia Sotomayor dissented saying that "These divergent liability rules threaten to reduce the consumer demand for generics... Nothing in the court's opinion convinces me that, in enacting the requirement that generic labels match their corresponding brand name labels, Congress intended these results" (Quote from CNN story in link)

I'm not arguing against all generic drugs. The money required to use brand name drugs all of the time would be astronomical. My worry is that patients are not treated fairly in the 'Save Money, Use Generics' equation and that there are exceptions to every general rule.

We need to do four things:
1. Mandate better equivalency and quality testing on generics.

2. Make generic drug makers responsible for harm done to consumers, in the same way as with brand name drugs (see below).

3. Actually inspect factories where drugs are manufactured for use in our countries.

4. Have an effective appeals process for patients who can't tolerate generics for reasons such as allergies to non medical ingredients called fillers.

The next post will have stories of how this situation affects some real patients.

graphic by dmckinnon ©  

Inspiration and Unmet Needs

This past weekend as I watched the MedX livestream and the associated Twitter timeline; I was saving tweets that impressed me. When a panel discussion came up called "Addressing Unmet Needs in Healthcare" I was prepared to take a 'brain rest'. But a week later I was still looking at this series of Tweets and finding them thought-provoking. Seeing a rebroadcast of that panel would help me to learn more. I hope it is posted in the future.

                                      I need real food

Stanford Medicine X @StanfordMedX

"There are 3 types of unmet needs: I didn't know, I know I should, I want to but I can't"-@AmyCueva #MedX

.@StanfordMedX @AmyCueva gr8 points-people often blamed for not doing "I know I shoulds" for health. Blamers don't acknowledge other unmet needs #medX

Susannah Fox‏@SusannahFox2m

3 types of unmet needs. Look for patterns. Anticipate. Take responsibility. - @amycueva #medx pic.twitter.com/DCrgr2s81l

InnoCiter (CarlaNB) @InnoCiter

Via @StanfordMedX: @AmyCueva: look for feelings, triggers, transitions, opportunities, partners #MedX #designthink #hcinno

@nickdawson: " 'No' is a barrier to innovation - it says 'stay comfortable, don't change.'" -@AmyCueva #MedX #designthink #s4pm 

Kathy Nieder MD‏@docnieder1m

@timautrey Talking about the 5C's that affect processes Culture, Conditioning, Content, Context, Choice #medx

"Design thinking starts with 'How might we...?'" -@dennisjboyle #MedX

Stanford Medicine X‏@StanfordMedX 29 Sep"I've never encountered too much of a disparity. At end of the day, everyone wants health. It's just how you get there." @AmyCueva #MedX

Amy Cueva has a powerful message. I suggest that you read Regina Holliday's blog post about the painting she did at Amy's conference called "Health Experience Design 2012." The post is called "Wind of Change."

If you don't know about Regina Holliday's work here is a chance to be introduced to it. It is illuminating to read about the reasoning that makes her paintings so deeply meaningful. She was once accused of being too able to call up emotion when she speaks about the deeply personal mural that started her journey to being a health activist artist. 

It is just not credible. Though I have never met Regina, when I tell her story to others I feel emotional even with such distance from her and Fred. The ideals she fights for resonate strongly with patients and have made her an inspiration. Having one of her Walking Gallery jackets is a great honour to anyone in healthcare.

Participation in Health Goals

Participatory medicine and best outcomes for patients were part of a Twitter conversation about health goals at the Stanford MedX Conference (#MedX). I collected this series of tweets and put it into a storify called Goals Tweets From MedX. 
Seeing this series of Tweets made me think. We never stop working on personal goals, but I hadn't thought about health goals beyond the generic "better health".  Nor have I asked my doctor what he thinks I could achieve.  I imagine we have similar treatment goals but sharing them might help both of us proceed more effectively.

                                           It's a beat up DeSoto

I wonder if my doctor thinks of me as a beat up old car that he is trying to keep on the road, or if he sees more hope than that. It must be easy for health care professionals to generalize in this area because deep down there are many similarities in what patients want.

Here is a paper about Shared Decision Making tweeted by @EmpoweringPts which even shows a form which can be used to make collaborating on health goals with your doctor easier.   

Managing goals can help patients to deal with depression and anxiety symptoms according to this paper titled A Goal Management Intervention for Polyarthritis Patients.  The authors say emotional well-being is a key factor in prognosis, i.e. how well you will do in the future. You need more than just the absence of psychological distress to do well.  These are the three factors that affect emotional well-being the most: "positive affect, purpose in life and social participation" You can read the full paper at the link. 
       
I was very impressed by this comment made by @AmyCueva at Stanford MedX when she said that emotional intensity signals an unmet need. That is easy for patients to believe. She continues “You must pay attention to pain, frustration, and anger. Our responses to the many authentic, emotional voices we hear are testament to the critical importance of the story".

                                Emotional Intensity from www.womens9.com

Another interesting development that I don't know much about yet is from Britt Johnson who tweets as HurtBlogger. She and Creaky Joints have developed a goals app for chronic patients called The Goal Machine. The focus of current apps on self measure data may not satisfy us as chronic patients so the new app attempts to address that.

Denise Silber‏@health20Paris29 Sep

Wonderful human perspective from @hurtblogger about #quantifiedself - how to apply to individualized goals of patients, not athletes #medx

@HurtBlogger chronic patients have different goals: bathing, walking up stairs, cooking dinner, going to work, exercising, medication compliance #MedX 

I look forward to hearing more and have added the link to Creaky Joints above.