Volunteering and Time Affluence

I first saw the phrase "time affluence" in the newspaper a year ago. Doesn't it just roll off of your tongue? It feels like another and maybe better way to be rich.

                                   Your Money

                                      Or Your Life

The short article I read described a study by Cassie Mogilner, PhD, which showed that when you do volunteer work or help others your subjective sense of time increases. This happens because you are increasing your sense of competence and your belief in your own ability.

That bodes well for your future too because the Public Health Agency of Canada says that "people who remain actively engaged in life tend to have better mental health and are more capable of coping with life transitions"  

So it's a win in two different ways: it seems that you have more time and in fact it will likely help you to live longer. And these are only the benefits to you. This is even before your good work is taken into account 

And another article by Oliver Burkeman where he says that "Giving time enhances your belief that time is voluminous - and that you're capable of making future time voluminous too." That feeling of unhurried leisure can't be bought.


Another interesting article (if you have time) is 
Goal Striving, Need Satisfaction, and Longitudinal Well Being: The Self Concordance Model Kenneth Sheldon and Andrew Elliot. (It's a 16 page pdf so be warned)

Patient View of Humira

When I first developed RA the treatment plan given by my Family Doctor was to take a maximum dose of aspirin (12  pills a day) for a three months to see if that would have a beneficial effect. Over those months damage continued to occur. Since this treatment did not seem to make a difference I found another doctor. His treatment was NSAIDs, specifically Indomethacin: That resulted in gastro problems added to the pain, swollen joints, weight loss and fatigue.                     

                                   

When I finally saw a specialist over a year later he outlined the possibilities  The most aggressive treatment was in his Pyramid of Possibilities was immune suppressant drugs.  I was prescribed gold injections and then transitioned to methotrexate.  Over the years the methotrexate was combined with almost every other DMARD (disease modifying anti rheumatic drug) possible.  I kept trying all the combinations hopefully over the years until I became more involved and informed about treatments and possible choices. 

Once I was aware that methotrexate does not actually stop damage to the joints and found out there were other choices that did stop joint damage I campaigned for treatment with a biologic drug. In my reading I had learned that biologics produced a greater sense of well-being and a better quality of life at the same time as they stopped progression of damage. 

I saw the info above in online CME (Continuing Medical Education) courses during the time that pharmaceutical companies were the major sponsors of many of them. Reports of drug trials like the PREMIER Study and ARMADA were a further influence on my desire for biologics.

I combined this knowledge with the facts of my life.  I was working full time but all other areas of my life were neglected because of  pain and fatigue.  Most of the time I was not at work was spent resting up to be able to continue to work. My exercise tolerance was very poor. It used to take me two days to recover from any efforts beyond isometrics. Now with Humira my recovery time from exercise seems normal and I am able to do more in a day than just work.

There has been great progress in the treatment of RA over the past years. Prior to 15 years ago there were only 7 new treatments found in 70 years. Now it is hard to keep track of all the new alternatives. The improvement in treatment is noticeable even by the look of the people waiting at the rheumatology clinic. No wheelchairs and very little visible damage can be seen now.

Some of my friends in online groups have had moderate or serious adverse effects that have led them to discontinue biologic drugs. However at least as many have said that a biologic has given them their lives back. That is important!  Even if my improvement on a biologic is not remission and amounts to me feeling 20% better it’s a welcome change.  

Progression is the major factor in my choice. I can’t afford to have any new joint damage. While only one active joint may sound like good control to many, when that one joint fuses it’s useless for good and the disease moves on to another one. There are no miracles in RA that unwind joint damage.

Over the past 7 years that I have been taking Humira I have been sick 4 to 5 times with colds and flu and the severity has seemed worse but not the frequency. 

I did express concern about the price before I started to use adalimumab. The “payment specialist” with the organization that Abbott uses to distribute the drug looked into methods of payment to lessen the financial impact. That organization paid my deductible for the first year to make the  transition easier.  It was a good investment for them seeing that I am still taking it after seven years.

I have been influenced by this great talk by Dr Edward Keystone called The Most Exciting Time Ever In The History of Arthritis and by Dr Shashank Akerkar's blog post called Time, tide and inflammation waits for nobody.

The choice of Humira as my biologic was mine. The Dr. I was seeing gave me a choice of the 3 major anti-TNFs. I had concerns about one and chose Humira based on the ease of use and my schedule.

Despite my enthusiasm for effective treatment I am anxious to see full disclosure of significant risks through the release of data from clinical trials. The legal action blocking disclosure of trial data by pharma companies Abbvie and InterMune is a step backwards for patient safety. There is a petition here against the lawsuit.

Their lawsuit has shut down the whole public access program of the European Medicines Agency.  Patient safety is not a trade secret! To paraphrase @ePatientDave "Give us our damn data."

If we are choosing to take these budget busting drugs we should have access to data about them.

Behind the Mirror of Self Management

I was reading a study on PubMed: Sorting Through The Evidence for the Arthritis Self Management Program and the Chronic Disease Self Management Program.

It was written in 2011 and is an analysis of previously published trials and articles about the two different self-management courses. Teresa J Brady, PhD is the contact person on the study which was done by a team of researchers.  She is presenting at the American College of Rheumatology (ACR) this year in a session that includes Kelly Young, aka RAWarrior, Dr Jeffrey Curtis and Elizabeth Riggs, RN. They'll be discussing the ways doctors can enhance their practice of medicine using patient engagement and self-management support strategies.

Through reading on the Rheumatoid Patient Foundation website I learned about the talk at the ACR and so looked to see what Teresa Brady had published. She sounds as if she is immersed in the field of self-management.

Taking a self management course is an eye opener for a chronic disease patient. Whether your coping skills are excellent or you are not so confident, you can learn more.  I took the course twice - once online and once in person. They were both effective in similar yet different ways. 

                                                 This is the book used with the online Stanford course

The online course is more convenient and is accessible no matter where you live. The other members were really supportive and helpful at all hours of the day and nigh when it was convenient. However there is no substitute for real people. The real-life course I attended is offered by The Arthritis Society in Toronto and other centers in Canada.

Social engagement is said to be a factor in living a long life. Do you think that online social engagement is as powerful as being involved with real life people? Also I have heard it said that the best way to live many years is to have a chronic condition and take very good care of it.

When I mentioned Behind the Mirror of Self Management I was thinking of the scene in The Wizard of Oz where Dorothy and the Tin Man,Cowardly Lion and the Scarecrow find that the Great and Powerful Oz is just an ordinary man.

In the case of self management the person behind the mirror is also an ordinary person. It's us.  We're the great and powerful people in self management.  No matter how good a program is we are the ones who make it work for ourselves and the others in it.

There is proof of benefits based on the results in Teresa Brady's paper. The idea that changing some of your behaviour can change your heath is not a new one. It's tried and true but when you suddenly find that you are sick it's hard to get past the psychological impact that can cause depression and anxiety. "Health distress" was a phrase that applied to me for years after diagnosis. 

Sometimes I felt that doctors were my main social contacts outside of work and home. Obviously that was a situation that needed work.

I would say that if you have never tried a self management course that it's a good idea to give one a try. Then if your doctor comes back from the ACR ready to adopt this strategy you can give him the benefit of your own insight. That would be empowering.












This year in addition to our exhibit booth, RPF Founder Kelly Young, RPF Advisory Board Member Dr. Jeffrey Curtis, and RPF Member and Registered Nurse Elizabeth Riggs, PhD will be speaking together at one of the sessions. They will present along with Theresa Brady of the Centers for Disease Control & Prevention, for a combined session titled: Enhancing Clinical Practice With Patient Engagement and Self-management Support Strategies.

Goals and Encouragement in HealthCare

Communication and collaboration between doctors and patients is a topic that I am happy to see in Tweetchats. In the last #HCSM on Sunday evening, August 18 at 9:00pm the final question dealt with goal-sharing with healthcare practitioners. Is there standardization, how are goals communicated to HCPs and what if the goals that the doctor has for the patient are different from the patients' goals?

This link leads to a storify (my first one ever) of some of the enlightening responses. You can see some of the responses for yourself.  Tweetchats are an outstanding way to get a view of a subject from more than one perspective.

                                   Iris                     AMcKinnon

It was a fascinating topic and my favourite story was by Dr. Iris Thiele Isip Tan. Her patient was so excited to reach her goal that she jumped up and hugged her. So achieving the goal empowered the doctor and the patient! as Dan Goldman said. And neither will forget the moment.

That is the ideal result of collaboration between doctors and patients to reach goals.  

Which brings me to what I think is the secret ingredient that helps people become more literate and engaged.  Encouragement. When people manage to achieve even a small step on the road to improvement some congratulatory words from the doctor are a real accelerant for many. 
Here's a commercial for encouragement. I just saw it through reading RA Warrior's blog this morning. Being encouraged is often an exceptional event. We can all make it more common.

Here are some guidelines to goal setting:

 

Whether your goal is climbing a mountain, planning a party or improving your health there are ways to reach that goal.  When you take a self management course you find out that goal setting is one of the most useful tools in the chronic disease management kit. 

                                     Wait! Do I need to open the box?

There are no secrets to effective goal setting - just guidelines to help you succeed.  You can chose something very difficult but then break it into achievable steps. That's your Action Plan. Then work on each step one after another.

1. You need to be specific about your goal. Not "I will lose weight next week" but "I will not eat after dinner on Monday or Wednesday" for example, or "I will walk for 1/2 hour on Tuesday and Thursday in the evening".

2. As in the example above you want to be able to measure the goal. Not eating after dinner on two days is the goal and it is easy to tell if you succeed.

3. It also has to be realistic and achievable. If you know in advance that you will never accomplish it you need revise your goal. A rule of thumb is to rate the likelihood you'll do it on a 10 point scale. Your confidence should be at a 7 or better.

4. Your goal should be relevant to you and your plan.

5. Making it specific as to time is also a proven method of making your action more likely. 

Even with these you should think about what obstacles or setbacks might come up and make a plan for that too. If there's a surprise party and you need to eat cake you could choose another day to abstain from sweets.

                        Digital image courtesy of the Getty's Open Content Program
 

Climbing this mountain in one day would be beyond me now but I'm sure I could do it by preparing gradually.

Good Luck on your new plan!

HCLDR Chat and Healthcare Mystery Shopping

Feedback from consumers and providers is a great way to make an organization work better for everyone. Once you start thinking about using these insights great changes can occur -- if there is a will to use it.

This should work in healthcare. A great discussion about the topic of patient feedback can be found here in a transcript of the #HCLDR tweetchat from Tuesday August 13 at 8:30 pm EDT. Below are the top 10 participants by mentions.

• @practicalwisdom @colin_hung @teammdrs @soulmirror @dandunlop 
• @jcs0716 @docnieder @joshgray_hcit @strangely_t1 @ruthcarlosmd  

I had a different type of experience in feedback after my diagnosis with RA. When my symptoms improved I noticed a small ad in a newspaper looking for part-time mystery shoppers. I answered the ad and a meeting was set up by the coordinator at a restaurant near me. Despite being somewhat dubious I accepted the job.

It was purely corporate information gathering for the purpose of quality control at a distance. I felt sneaky, like a gumshoe doing a job, but in an underhanded way.  At least the experience in critical evaluation and customer service was invaluable.

My assignment was to go to certain walk-in medical clinics as a new patient and evaluate all aspects of the experience. These included the signage and accessibility, and the staff from receptionist to doctor. The thought of evaluating doctors was totally new to me, and a little daunting. I was not sure it would be easy to critique authority.

In the Canadian health care system my Health Card would normally enable me to walk in, show the card and see the doctor. This job though was being done for a corporation doing market research so I needed a story that let me pay cash for the visit.

I said I had recently moved from Quebec to Ontario and had no Ontario Health card. This way I had to pay.  Letting Ontario tax dollars pay for my "care" would have been fraudulent.

Part of the job was phoning each clinic from a list I was given and asking questions. I felt sure some of the receptionists were able to tell I was a designated shopper.  One was rude and silly on the phone and I understand he was subsequently replaced.

I would love to give useful feedback about many of the healthcare facilities I see now. Cleanliness, signage, friendliness,efficiency and neatness were among the areas rated in that past job. The compliments would probably outweigh the complaints but I see things that could easily be improved.

Some of the doctors were outstanding.  Those who impressed me most showed interest by asking more questions. They involved me in my story instead of taking it at face value and sending me away with a prescription. The good ones seemed to want me to leave with more knowledge than I had at the start of the appointment

RA was a convenient reason for seeing the doctors. I told one I was taking 9 aspirin per day. He told me he personally would always take coated aspirins to protect his stomach. 

 with ring splints

Another time I told the doctor I was depressed because I had actually felt that way after my diagnosis. That did not work so well. Even though the story hung together the doctor commented that I was smiling more than he would expect to see in a depressed patient. He was right. I was having fun doing the mystery shopping because I found it so interesting at the time. 

Now the chain of clinics is gone but it left behind an interesting memory for me.

Eye Care Tips for Computers and Eye Drops

I call my friendly optometrist perfect because he is man of great experience and kindness. He's a person who really is an authority on eyes. My GP, who recommended him, said he gives you "crisp" vision and it's true.

Using my computer for hours at a time was taking a toll on my neck and shoulders. That combined with arthritis was causing a lot of pain. My knowledgeable optometrist suggested that I get a pair of glasses for computer use only - they have only close and mid vision. That stops all the neck adjustments needed to see the screen.

                     Digital image courtesy of the Getty's Open Content Program.

He had very detailed tips for using eye drops.  It goes without saying that you wash your hands and don't touch the opening/dropper. 
Next you look up and pull down the lower eyelid to make a "gutter"
Put the drops in and then shut your eye for 15 to 20 seconds. This stops the tears from running out through your tear ducts because the upper and the lower one meet and seal each other. This helps the tears spread over the eye better.

                Digital image courtesy of the Getty's Open Content Program.

When you use your computer for long periods of time he suggests that you stop every 20 minutes. Shut your eyes and move your eyeballs from side to side. That helps spread the moisture from the corners of your eyes and keeps  you more comfortable.

He also recommends no eye makeup for me because of the Sjogren's Syndrome. A lot of it can end up in your eyes, as I have found out too often. After years with dry and sore eyes I have gathered up all of my eyeliners and plan to use them for an art project before I throw them out. So I guess I give up on smoky eyes.

                          Eyeliner as a halo/My Sainted Smiley      

Interesting fact from Getty.edu   "In Greek thought, large, staring eyes had an apotropaic power, that is, they had the ability to ward off evil and danger." Could that be why large eyes are considered so attractive even now?

Chronic Games

It's unlikely there will ever be a prize for any of these "sports". Sometimes though you have to laugh at all we go through for the sake of health.

It always feels like I should be in the Circus Midway when I try "Drop the needle in the Sharps Container." I miss more often than not, so I am getting lots of practice when I have to pick them up and start over.

Then there is the always fun 56 Pickup, modeled on 52 Pickup. What! You dropped a weeks worth of pills?  Too bad you'll have to pick them all up again. Maybe if you can't get them all your obliging husband will lie on the floor and roll under the bed to trap them.

This reminds me very much of Julie's incident from Real Stories of RA. You might say she is an inspiration.

It would be nice if this were just a game. Lucy dropped a pile of papers on the floor but the reacher was not enough help. So she squared them up with her cane and then took the cane and dragged the dog bed over near the papers. She was able to kneel to get them once she had enough padding. 

No dogs were moved in this operation.

There are also many other uses for that cane. Julie uses hers like a monkey's tail to push things into place or to get them out.  In the grocery store it is handy to to reach chips on the top shelf where no human can ever reach them. She can even help others!!

When You Know You're Sick and the Doctor Says No

We are the experts on our own bodies so if you go to the doctor with serious concerns and are dismissed with an offhand "Take 12 aspirins a day and come back in three months" you would not feel understood.

There's been a lot of talk about Dr Google and how he is an unreliable help to patients, but Dr G is there for you at all hours of the day and night, not like Dr Revolving Door. 

In my experiences the interested, engaged and enlightened doctors on Twitter and on their own blogs are exceptional. Not all doctors post videos about issues they commonly see to make life easier for themselves and their patients, nor do they make themselves available through social media to connect with others.

There are still a lot of adequate (or less so) doctors out there with blind spots and poor awareness about certain health problems, particularly if the diseases are less common. If you sent them a herd of zebras and horses we would all have horse problems and no zebra would be diagnosed.

                            Not all 4 legged quadrupeds are horses    AMcKinnon

I agree that the best way to find trustworthy online resources would be to get some guidance from the medical profession but a doctor who diagnoses you as fit or barely ill is usually unlikely to feel you need guidance on where or how to follow up so that you can learn more. 

Likewise if you don't think that those nagging pains or odd feelings add up to enough of a problem to see the doctor then Google may be helpful in alerting you that you should discuss these changes with a professional. 

When I was dissatisfied with my non-diagnosis all I did was go to see another doctor who turned out to be as blind as the first. He gave me stronger drugs at increasing doses for treatment as I continued to get worse. Seeing him was not empowerment on my part, just a defensive move. When it got really bad I gave up on the two of them and went to a surgeon - finally a proactive move! And the surgeon diagnosed the problem and sent me to a rheumatologist.

I could have been more insistent in the first and second encounters and tried to get a more helpful answer but I was an inexperienced patient and no match for the polished dismissive skills of the doctor. In fact when you're sick your thought processes are less effective so that does not help you to make progress in getting a diagnosis.
The consequences of a missed/delayed diagnosis can be serious. That's where support groups and online resources are at their best.  People who have gone through a similar experience know a great deal that can help you. 

The old adage "If it's not broke don't fix it" which accounts for some well thought-out watchful non-treatment doesn't always help. One person's "not broke" is another person's "I can't live like this. I have a serious problem."  I don't want to end up with this on my tombstone.

                                      from keywesttravelguide.com

http://www.ncbi.nlm.nih.gov/pubmed/18155338

Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056146/?report=classic Identity and psychological ownership in chronic illness and disease state

Illness Intrusiveness

Rheumatoid Arthritis is an intrusive illness that affects every area of your life.

There is a scale to measure just how much of an effect a chronic disease like RA can have. It's called the Devins Illness Intrusiveness Scale. As Dr. Arthur Bookman pointed out in his keynote presentation at the Sjogren's National Conference this year, Sjogren's Syndrome and Multiple Sclerosis are similarly intrusive.  I think RA also would rank up there with those illnesses but though I went through the questionnaire I am not sure exactly how to score the results.

                        Dr Bookman at the round table discussion. Sjogren's Conference 2013

Often all of your identities are affected, some more than others.

Spouse/Social being
Homemaker
Parent
Worker

As you go through the stages of RA some areas may take a smaller role, like work. Once you retire, if you get so far, work will become less relevant.  Of course your kids will mature and may make you a grandparent. Some of them will have learned to have a lot more empathy than their peers.

That still leaves you with making a home for yourself and your spouse if you have one, and all of the social interactions that are so necessary to keep you supported and healthy. Social networks are a strong predictor of longevity and good health.

I remember when my RA was out of control. I was so worried about being bumped or jarred because of the pain in my hands and feet that I formed a little wall down the center of the bed for protection.  Now that things are under better control I look at that as overkill thank goodness.

                        There's a wall between us          A.McKinnon

I'm sure it will leave you completely unsurprised to hear there are also fatigue scales. I read about one fascinating one today on Julia's Reasonably Well blog. It is always interesting to see where you fit when you look at them.

There's another one called the Medical Outcome Study Short Form 36 (SF-36) that is mentioned in this article about the way that fatigue affects quality of life in rheumatoid arthritis compared to fibromyalgia.