Saturday, 21 December 2013

Have I Lost My Abilities? My Pharmacist Votes Yes.

I read a story in the Toronto Star last week about the parents of a teenage girl who died after taking a drug called Diane-35 for acne. They are suing the drugstore that dispensed the prescription for failing to warn her and them about the dangerous side effects of taking it and for not mentioning that use should be limited to 3 to 4 months maximum.

The story in The Star, by Diana Zomislic, quotes a senior pharmacist for the company that supplies the HealthWatch information given out with each new prescription to Shoppers Drug Mart customers. He said that they restrict the number of side effects they mention on the newer info sheets to six because they don't want to frighten the customers. 

They made this change for the worse in 2004 and I complained to the pharmacist about the drug information sheet at the time. As a demonstration of how big the change is I will show you what the cautions and side effects were for the rheumatology drug called Arava (leflunomide) in April 2004 compared to the new style warning that I received in June of 2004. 

Here's the original old style information sheet. Note all of the words (620) and the caps to let you know what is crucial.


DATE: 04/04/14                                                            DIN: 02241889 
COMMON USES: This medicine is a pyrimidine synthesis inhibitor used to treat rheumatoid arthritis.
BEFORE USING THIS MEDICINE: WARNING: Pregnancy must be excluded before the start of treatment with leflunomide. This drug must not be used during pregnancy, nor by women of childbearing age who are not using reliable birth control (contraception). Unless female leflunomide users go through a certain process to eliminate this drug from their body, pregnancy must be avoided for 2 years after this drug has been stopped. INFORM YOUR DOCTOR OR PHARMACIST of all prescription and over-the-counter medicine that you are taking. Inform your doctor of any other medical conditions, allergies, pregnancy, or breast-feeding. USE OF THIS MEDICINE IS NOT RECOMMENDED if you have a history of blood, bone marrow, or immune system disorders. Contact your doctor or pharmacist if you have any questions or concerns about taking this medicine.
HOW TO USE THIS MEDICINE: Follow the directions for using this medicine provided by your doctor. STORE THIS MEDICINE at room temperature below 77 degrees F (25 degrees C) in a tightly-closed container, away from heat and light. IF YOU MISS A DOSE OF THIS MEDICINE, take it as soon as possible. If it is almost time for your next dose, skip the missed dose and go back to your regular dosing schedule. Do NOT take 2 doses at once.
CAUTIONS: DO NOT STOP USING THIS MEDICINE without first checking with your doctor. It may take 4 weeks or more to notice any improvement while taking this medicine. KEEP ALL DOCTOR AND LABORATORY APPOINTMENTS while you are using this medicine. THIS MEDICINE MAY LOWER YOUR RESISTANCE TO INFECTION. Prevent infection by avoiding contact with people with colds or other infections. Do not touch your eyes or the inside of your nose unless you have thoroughly washed your hands first. CHECK WITH YOUR DOCTOR BEFORE HAVING IMMUNIZATIONS (VACCINATIONS) for up to 2 years after stopping this medicine. BEFORE YOU BEGIN TAKING ANY NEW MEDICINE, either prescription or over-the-counter, check with your doctor or pharmacist. 
FOR WOMEN:THIS MEDICINE CAN CAUSE SEVERE BIRTH DEFECTS. DO NOT USE THIS MEDICINE if you are pregnant. You must have a negative pregnancy test before starting this medicine. Use a reliable form of birth control while taking this medicine and for 2 years after stopping this medicine. IF YOU SUSPECT THAT YOU COULD BE PREGNANT or if your period is late, contact your doctor immediately. If you plan to become pregnant within 2 years of stopping this medicine, you may need to follow drug elimination procedures. Ask your doctor, nurse, or pharmacist for more information about these procedures. IT IS UNKNOWN IF THIS MEDICINE IS EXCRETED in breast milk. DO NOT BREAST-FEED while taking this medicine.
POSSIBLE SIDE EFFECTS: SIDE EFFECTS that may occur while taking this medicine include diarrhea or hair loss. If they continue or are bothersome, check with your doctor. CHECK WITH YOUR DOCTOR AS SOON AS POSSIBLE if you experience a skin rash, headache, flushing, blurred vision, sudden onset of sweating, pale skin, yellowing of skin or eyes, dark urine or pale stools, unusual fatigue, or loss of consciousness. If signs of infection, anemia, or easy bruising or bleeding develop, this medicine may need to be stopped. If you notice other effects not listed above, contact your doctor, nurse, or pharmacist.
OVERDOSE: If overdose is suspected, contact your local poison control center or emergency room immediately.
ADDITIONAL INFORMATION: DO NOT SHARE THIS MEDICINE with others for whom it was not prescribed. KEEP THIS PRODUCT out of the reach of children. IF USING THIS MEDICINE FOR AN EXTENDED PERIOD OF TIME, obtain refills before your supply runs out.

And here is the new one in the current style. Half the words and half the side-effects.

Date: 2004-06-05 Tx: 10479202 DIN: 02241889

Common uses
This medication is typically used to control rheumatoid arthritis. It requires a few weeks to take effect.
How to use this medication
This medication is typically used only once a dav, However, your doctor or pharmacist may have suggested a different schedule that is more appropriate for you. Take it regularly and continuously to maintain its beneficial effects.
This medication may be taken with or without food. It is recommended to drink plenty of water while using this medication.
Important: Follow the instructions on the label. Do not use more of this product, or more often, than prescribed. If you forget a dose, take it as soon as you remember -- unless it is almost time for your next dose. In that case, skip the missed dose. Do not double the next dose to catch up.
As with most medications, this product should be stored at room temperature. Store it in a secure location where it will not be exposed to excessive heat, moisture or direct sunlight. Keep it out
of reach of young children.
Possible side effects
In addition to its desired action, this medication may cause some side effects, 
 notably: - it may cause hair loss;
--         - - it may cause headaches;
- it may cause diarrhea;
- it may cause spots or redness of the skin;
- it may cause dizziness -- use caution when getting up from a lying or sitting position;
- it may cause nausea or, rarely, vomiting.
Each person may react differently to a treatment. If you think this medication may be causing side effects (including those described here, or others), talk to your doctor or pharmacist.
Additional information
A treatment with this medication requires regular monitoring by a doctor. Be sure to see your doctor for all regularly scheduled appointments.

It sounds a lot better in the second version, doesn't it? It also looks better. I appreciate that health literacy is a problem but the original version, though longer, is quite easy to follow.  The new style is so lacking that I questioned whether this was actually the drug info form when it was given to me.

When I compared these two back when the change was made I was indignant that the pharmacy had decided for me that 'dumbing it down' was necessary and I complained about the missing side effects which could occur to anyone. I'd rather be alive and afraid than happy and dead.

Now that I see a case where better information might have helped a particular patient I wonder if Shoppers Drug Mart will make a change.  It sounds unlikely.

There was an another occasion where I went to my doctor and I got a new prescription that changed one of my long time medications for a similar one at my request and for health reasons. The pharmacy thought the doctor must have made an error and phoned and got it changed. When I picked it up I was dismayed thinking that they had filled the wrong prescription. It upset me that they had interfered between me and my doctor without my consent or knowledge.

Another thing that is distressing to me as a patient is the continual change from one brand of generic drug to another generic based on what is good for the company. 

DodoBird from

Saturday, 14 December 2013

Gas Pumps and Your Hands

I'm grateful and appreciative for friends who are there for me year round. At the moment sciatica is forcing me to lie down rather than sit so this a a duo guest post. It's always something at Christmas and sciatica is (mostly) better than chills and fever.

Here's Patty talking about pumping gas, a problem for any who are disabled and still drive. 

"I was trying to put gas in our car one day and was unable to get the cap off the gas tank.  A very nice man with strong hands helped me - usually if you ask, someone will help you do most anything.  You just have to not be too self-conscious to ask for help. 

I even have one of those gas cap grippers that is supposed to help open the cap, but that darn thing didn't work for me. I don't mind asking for help but once it's open you still have to pull the hose out, press the handle and then get it back in the slot. It's just easier to use a full service gas station, if you can find one."

Not what it used to be. From

And here's what happened to Ginny at the gas pump:

"LOL Anyway I had to get gas. I was already tired and hurting from doing the floors. If I hadn't had to make the house payment I would have just stayed home. I was done getting gas, hanging the nozzle back up and slipped! Grabbed the gas hose and kept myself from falling on my butt but grabbing the hose hurt just as much as falling I think. It left a mark like a rug burn on my pinky and side of my hand. Oh my goodness it hurt so bad! 

My hands had already been hurting and that made the pain go off the freaking chart! I was in tears all the way home. Then I meant to turn on the dome light but pressed the button to open the sunroof and a whole bunch of snow fell in, every where, all over me, my purse, cell phone, quite a mess! So got in, emptied out my purse, changed clothes, put the groceries away and stuff,  took my regular night time pills plus Advil PM. I waited a bit, was still hurting pretty bad so took half a pain pill. "

There's danger in everything - you just have to laugh and take care.


Wednesday, 11 December 2013

Martha Doesn't Live Here Anymore

Here's a wise guest post from Julie. I think she and her husband have the true Christmas spirit.

"I have certainly "re-invented" many aspects of my life to accommodate my health.  I am sure that most of us have done that.  I tried for a long time to just keep going as usual at Christmas, but that didn't work at all.  When I was younger, I did much better and could do more.  As older age sets in, I struggle more each day.
I think the thing with the Holidays is that we all have to do our normal routines and then we have to add more because of the holidays.  That is what is hard for me.  I have a hard enough time just getting through the day doing what I have to do - laundry, cooking, shopping - (you get the idea) and then piling other things on top is just plain too difficult at times. 

Next week and the weeks following I have to get things done for Christmas.  My youngest son has graciously offered to have our Family Gathering at his house.  I haven't heard from the rest of the family, so really don't know what everyone plans to do.  It is not fair that he is hosting everything again!  Hopefully, we can figure out who is planning to attend and figure out some simpler dinner menu. 

Heath-Robinson. How To Dispense With Servants In the Dining-Room

The family is all spoiled by my past formal dinners.  We are not doing that anymore!!!  My body has rebelled and I just am unable to repeat my past "Martha Stewart" performances - HA!

I just accept what is and go from there.
John says all of the neighbors probably think that I am dead because I haven't taken the usual dog walk in months.  I was just about ready to start the walk again when I broke my toe!  Now, the weather is awful and I don't want to go outside.

I wish all of you could see Lou Lou the cat.  He is a monster in size.  I can barely lift him.  We plan to have him neutered in the next few weeks when he is 4 months old. The doctor said that he would be more able to withstand the anesthetic then.  We have ordered him a heated bed as he sleeps in the garage.  It was supposed to be delivered today but is not here yet.  John asked me what I wanted for Christmas and I told him I wanted a heated bed for Lou Lou and he said that is what he wanted also - so that is what we are giving each other - a heated cat bed. - HA!"
Old Christmas Card

That's such a great present Julie and John are giving to one another. You can't help but smile.

Here's a link about strategies for dealing with patient burnout that also has 10 useful tips. I'm a pushover for a good list and Martine Ehrenclou has written a most helpful post.

Saturday, 7 December 2013

A Place For Your Stuff

When we went to BC for our holiday one of the first people we met was Natalie Lanoville at the First United Church in the Downtown East Side. Their Ministry has a long history of advocacy and focuses on four pillars: Social Justice, Hospitality, Housing and Healing.

Mural at First United Church, Downtown East Side

Natalie's been a friend on Twitter since the Church put out an urgent call for funds to buy laundry soap so the clients could wash their clothes. My husband felt that was a real need and responded. After that he kept in touch so we ended up having a tour of the place and a Tweet up lunch with Nat.

One area she showed us really struck me because of its practicality and my own attachment to "stuff". First United turned part of their parking garage into storage space for homeless people. Everyone gets a bin; a few store shopping carts.

Storage bins at First United

She told us that in the weeks after this storage was put into use that property crimes and littering in the area dropped dramatically according to the police. I can imagine nothing more useful than this idea, with the exception of course of food and shelter. It is a practical and concrete way to ease the lives of those who are trying to overcome problems.

Now the Church has an Indiegogo campaign to raise funds (campaign closed successfully) to replace the bins. I'd like to suggest that some of you with much donate in this season of abundance, so that people with very little at least have a place to keep it safe.

They have a really heartwarming video at the Indiegogo site. The people using the bins describe what it means to them much better than I ever could. 
Another area they have at First United is a chapel which provides a place of peace, as well as a space for healing ceremonies and meetings.

Lunch with Nat was great. Here's a picture of it, though the company was more of a feature than the food.

The restaurant was also notable. Thai and quirky. It is always great to meet Twitter or online friends in real life.

Wednesday, 4 December 2013

So many "E"s in Our Lives

There are so many "E"s in ePatient. We've got engaged, empowered, equipped and enabled as goals, and many of us are working diligently to achieve "all E"s on our progress cards. The resulting (hoped for) collaboration with our doctors is a big step from the position most of us are in when we get a chronic disease diagnosis.
ePatient by Anet

To take on an active role in our care we need to be empowered, equipped, enabled and engaged.  As we truly start working on upgrading our skills to effective levels there are a few other "E" things that will help us.  It's almost like a puzzle game. Finding those special "E"s can help you to become an ePatient. 

I think the missing "E"s are encouragement and empathy, and it is the letter E that is sponsoring this idea.
A letter from our sponsor.

You can use them in your own attitudes towards yourself, but they are most powerful when they come from someone else

With a sudden health problem that is unlikely to disappear you wish for superpowers just to get to the normal level that other people appreciate. Sometimes it's empathy or encouragement that gives you the key to gaining knowledge or improvement.

Empathy  - you know when it's not there - can be enhanced by some films or books as described in this blog post called "Empathy - The Secret Sauce in Physiotherapy?". Coincidentally my best source of encouragement has been my physiotherapist. See this post about a turning point for more details about encouragement/empathy.

Here's another story/post where coaching and encouragement were good for doctor and patient. I really liked Dr. Thiele Isip Tan's enjoyment of her patient's success.

Maid of the Mist Double Rainbow. Dad's last cruise

For me the old model of doing everything that I was told and feeling that poor progress was my failure has been left in the past. 

And on the positive side I read (and can't find the link) that having a chronic illness and treating it very well is a secret to a long life.

Here's another link that I liked Placebo, Nocebo, and Expectations: Leveraging Positive Outcomes. The idea that even non-verbal clinical behaviour can influence patient outcomes certainly helps to explain why some patients thrive with a certain course of treatment while others don't.

Saturday, 30 November 2013

If You Consulted My Rheumatologist This Is What Might Happen

This is a description of what occurs during a typical visit to my rheumatologist, in case anyone wants to compare. At the initial visits there was more detail than described here, but after years of seeing him there's a comfortable pattern.
Company while I wait for the doctor

At each visit, in addition to normal conversation, the Dr checks on my medications and asks if there are problems connected with them. Then he asks whether any new issues have come up since the last visit, good or bad.

In front of him are the forms I filled out in the waiting room. That gives him my assessment of pain and disease activity, and he sees how I rate my quality of life (HAQ) and ability to accomplish certain activities.

Then he checks for tender and swollen joints in my hands - the knuckles and the PIPs (Proximal Interphalangeal joints) - using the four fingered method of assessment. He marks this down on the homunculus he has stamped on his sheet of appointment notes. There's a space to record the total number of swollen and tender joints. I think he records morning stiffness as well. It is always asked. He doesn't bother with the finger joint closest to your fingernail. Most rheumatologists say swelling there is not RA.

Homunculus drawn by me

On many visits he checks on the range of motion in my elbows and shoulders. It's no use any longer to check the range of the wrists since mine are damaged and both are now fused.

The next step is getting up on the examination table. He checks my blood pressure and listens to my breathing with a stethoscope, front and back. Once I lie down on some visits he palpates my abdomen to determine if the liver is enlarged. At this point he checks lymph nodes too.
Next it's the lower body - internal and external rotation of hips and whether I can raise my legs, and a quick look at the knees and ankles.
Musculoskeletal exam

After this I sit down again and we discuss what happens next. I had a look at the chart and there's a space the doctor to record his impressions also. 

Then comes the plan. I complained once on Twitter that plans were often not communicated - that may be true for the long term, but short term I leave knowing what should happen over the coming six months and with a new appointment date, bloodwork requisitions and any prescriptions needed.

Every year or two, if my ankle is painful he will give me a cortisone injection in that joint. For other joints I have very infrequently had ultrasound guided injections that needed to be scheduled through the hospital.

Sometimes he has a resident or fellow with him. This slows the process down but is often interesting. The last time I saw one he noticed something new, so even though it is sometimes repetitious for the patient it can be worthwhile. 

Though he covers a lot he is able to do it efficiently and carry on a conversation at the same time. It's very satisfying to hear expert opinions and to discuss health issues. 

Even though I have had arthritis for so long I approach my appointments with hope and expectation. There is always the hope in my mind that a new idea or strategy might change my life  for the better. It's not likely, and yet there are actions that can help you do well with chronic disease that are not medical. 

As I have learned more about my health and my disease I am able to have much more in-depth conversations with my doctors. Learning more is always a good idea.

Wednesday, 27 November 2013

Your Last List

Anyone can make long lists of things they don't want to do. On the top of mine you'd find colonoscopies, but after participating in #EOL chats with @DrBeckerSchutte over the past year and the #HCLDR chat from November 26th it's evident that making my wishes for the end of life known is what really stands at the top of the list.

Obviously this is not my stone but it was a surprise and a warning note to see it.

Having worked in a bank for years when I was young I am well versed in starting a conversation about wills and executors. The main reason that resonates with people is that if you don't make your own choices about your money and possessions in a will, the government will step in and take care of it for you. That's not a popular choice.

As for executors, that too can be a delicate problem that can tear families apart.  And yet people take far more care planning the financial issues than they do with their lives.

The quality of life you have at the end of it depends on choices that are made, and who knows better what you want than you yourself. 

My dad set a great example of planning. He made sure that he had done a Power of Attorney for both financial and health decisions for himself and my mom, as well as a will. He also planned his funeral and hers in as much detail as made sense. This was a huge relief when they did die. We could concentrate on family, not the business of funerals.

It was wise of him to do this early. No one could have foreseen my mom's stroke, and her long survival after my dad died.

So this is a call to people who read this to start having discussions about the end of life. 

It will happen to us all.  Studies show 80% prefer to die at home and yet 60% die in a hospital and only 20% die at home.  The figures for survival after CPR are dismal in the elderly - it's really meant for young healthy people.  If you have not chosen to "Allow Natural Death" (AND) or "Do Not Resuscitate" (DNR) you will get the full 'benefits' of modern medical technology even when you would die shortly no matter what is done.

More interesting reading.

How Do Physicians and Non-Physicians Want to Die?

The Other Talk - About talking to adult children about the way you want to live the rest of your life.

The information above is very influenced by the Tweetchats I mentioned, especially a tweet by @ChadCampbell119 when he said "I think including #EOL in basic education like we do with mammograms, colonoscopies etc. Preventative is better. Don't wait till too late."

He also Tweeted this link that discusses what to do with a loved one's online accounts after death. It's very relevant to those with a rich virtual presence.

See the One Slide Project and HealthBlawg for ideas about the questions you should be asking yourself and your loved ones. I jumped into this post with enthusiasm, not really absorbing the years-long tradition of the "Engage With Grace" Project each Thanksgiving. The answers to the "One Slide" will take you a long way towards a decision.

Wednesday, 20 November 2013

Prevacid and the Perils of Pauline

This is what is happening to my friend Pauline in the US, in her own words. That makes it the first guest post!

AHHH...the insurance debacle.

I got a  call today from the CareSource guy who manages my case and he said they denied the Prevacid again.  Well, I lost it, for me anyway, then felt guilty afterwards. 
Why did they deny it?  Did they get the doctors letter?  Did they read it?
Step Program from

The reasons they state for not approving Prevacid are that the generic is the same drug as the brand name and a step program of trying other drugs is needed. Now I am on the 90 day trial of the 2nd manufacturer, but it upset my stomach on day one, so am not taking anything for my acid reflux. I'm just sitting till my waiting period has expired and so I am wasting money by not taking the same medication that I tried in 2007 when it did not work.

This is what I need to do again:
I need to use drugs from two different generic manufacturers again.
The Doctor needs to send the chart and history (he has done that).
He has written a letter. All the things they need, we've done.  I asked, doesn't Caresource read anything?  They're sending me the same denial letter over and over again!  The two other med manufacturers are Dr Ruddy and Sandcrest.  Does the insurance company read anything or do they just deny and put everyone off?  I think they don't care about the people - just about making money.  This will be my third letter stating the same reasons!
Sometimes it's like a merry-go-round

The rep said well, I wouldn't say they just worry about the cost not the people.  I said "Well, what does this look like?  I don't mean to take it out on you but this has been ongoing for about 9 months or more. I'm not taking any acid reflux meds and probably developing ulcers because of the stress".   

They just want us to give up on getting this med and I'm sure the majority of patients do.  And if the generic made me feel okay, I'd take it tummy says no way.
My CareSource Navigator said that if I get this approved, make sure that the Dr pre authorizes it..because prevacid and nexium are the two hardest to get.  They're the most expensive. 

The pulmonologist said we (patients) should all rally against this.  How do you do that?  There's so much to rally against...what do you start with?  Doctors that drop you, meds they prescribe for you that are denied, moving your scheduled appointments to another later date, going to only the poorer hospital, switching your generic meds constantly...with different manufacturers?  Is that safe? 
Not a drug rally. This was environmental

So, what do I do now?  He said to call the doctor's office: they got a copy of this denial letter and have them call the Peer to Peer group in the CVS Pharmacy.  HMMMM..can I call the Peer to Peer group myself?  Nope.  Lucky for them.  He said they aren't even allowed to call them anymore.  Sherry at Dr X's office has to call so I called and left her a message.  No hurry..wonder when she will start blocking my caller id.  LOL 

I feel bad being kind of nasty with the rep but it rubbed me the wrong way.  Even Dr X said,  this letter is all we can do..the last step.  I hope it works. Anyone need some nails cause I've been spitting them out since 10 am? 

I think (KNOW) now that I am fighting for principle.  I could easily change to something else but I know prevacid doesn't upset the stomach like the why try number 3, 4 and 5? 

Really, I thought..according to the insurance and medical companies, that the generics are all made the same as the name brand.  So???

Generic is not the same .. I don't care what they say. Its a nightmare here to get your name brand meds.  I don't think the generics are made to match the name brand. For sure the fillers and delivery system may be different and probably made in factories with poorer quality control. Look at the Ranbaxy settlement for one example of substandard drugs.

It's stupid.  My care source navigator told me that she tells her patients if they get do get approval on nexium or prevacid...never let it drop cause it's like gold.  What a waste of time, paperwork, medication and my health. My husband used to call this "thinning the herd".

I have 2 friends who have had success on this name brand drug and no luck with the generics. I wonder if they are the only ones? It's too bad that so many with RA need to take additional drugs to protect their stomachs from damage by NSAIDS.

Saturday, 16 November 2013

Should I Stay or Should I Go?

Thanking about a change in medication brings this song to my mind.   Should I Stay or Should I Go? by The Clash

Changing medication is a dilemma unless you know that your current medication isn't working. In that case, most likely you will try what you and your doctor collaboratively decide on as the best choice for you. (That last statement describes the ideal situation between doctor and patient.)   

The real problem comes when you think the way you are feeling now is just not good enough. Making this decision is tough. With a chronic disease you get used to feeling less than wonderful most of the time and you may not even realize that "better" is achievable. 
WikimediaCommons DeRuzne

It's a gamble. Do you hold the cards you have and stay with the status quo, or take a risk that a new (to you) medication will improve your life? If you can manage to go to work every day, but have no energy at all once you get home can you live with that? 

Here's an abstract from a poster that was presented at the American College of Rheumatology meeting this year. It's called "Understanding The Preference to Stay With the Status Quo". It seems that the positive emotion of hopefulness has a large part to play.

To me hopefulness and optimism go together. Could this mean that optimists change drugs more readily? Are they more receptive to the current "Treat To Target" strategy?

For more about the push for treating to target here's another link to a paper by many leading rheumatologists. 

Wednesday, 13 November 2013

Learning to be Healthy

This article titled What Makes Canadians Healthy or Unhealthy contains an interesting discussion of why just spending more money on health care will not improve health in the general population. Many of our health problems are influenced by factors we can influence either alone or collectively as a society. 

There was an online article in the news lately talking about the Nurses Study. It stated that if you eat a good diet in your middle years you are more likely to "live long and prosper".  Here prosper means having no diseases that interfere with your work and enjoyment of life.

We have never been in a better position to find out what we need to know to stay healthy. My dad had a book of advice called "Dr. Chase's Recipes" which gave him advice on common illness. More than 100 years ago it was second only to the Bible in popularity, and sold over 4 million copies. We've come a long way since then, and we still have the same desire to know how to take care of ourselves. 
Doctor Chase from my Dad's own copy

You can find so much more accurate information now through online resources than you ever could from Dr Chase.  The internet is like a giant all-you-can-eat buffet. 

The hardest part is discovering which resources will do you the most good. In one sense it's like a first trip to Disney World where every attraction looks equally good. The truth is that they're not equal and planning the trip with a guidebook can help you hit the high points and maximize your time.

So who can you trust for your online research? Everyone says their own site is excellent.  Dr. Google gets more visits than anyone but beware - the loudest voices and top-ranked sites that come up are not always the most accurate.  On the plus side Google has changed the way it ranks sites so that credibility is more likely to be near the top of the ranking.

Knowing who and what to trust is a skill that can be  acquired, but it takes work and judgement to learn to do this. Lectures, webinars and other resources made available by credible and mainstream organizations and advocacy groups are often a good place to start you out on your search. 

Social Support is a plus 

It's when you begin to educate yourself that you need the most help to get on the right path. Here are some ideas:

Sign up for the Reaching Out with Arthritis Research (R.O.A.R.) webinar/seminar which is held in the fall every year in Vancouver Click here for past events and to hear patients, doctors, researchers and ethicists talk about the benefits and harms of using online technologies in health and healthcare.

If you have Sjogren's Syndrome you could attend the Annual Patient Conference. This year - the 10th Annual Conference - the line up of speakers was amazing. I have wanted to hear Dr Robert Fox speak for years. Now I'm looking forward to the On-line Webinar in 2017 on Oct 21. It's called Navigating an Immune System Gone Wild.

If you're starting to learn you'll find get reliable information. If you are already experienced you'll hear about the latest research. Involved patients have better outcomes!

Many pathways to knowledge

Saturday, 9 November 2013

Taking RA On The Road

Sometimes it seems chronic disease takes more care and maintenance than a delicate exotic animal. Going away from home needs careful planning and a lot of lead time. Travelling alone would be even more challenging than going with a partner. Some illnesses may be a largely invisible but the items needed for support and success caring for them are only too visible and overall they're heavy.

Here are some  examples of what helps make travelling easier for me.

The drugstore that I use made a set of small labelled vials for prescription drugs marked "For Travel". That helps reduce the volume of pill containers. 

For vitamins I used a muffin tin and saran wrap that sticks to itself to make little "pill hills".

I worry  about taking hard to replace custom-made splints even as carry-on luggage so I am using older ones that take up less space and are not so fragile. Breakage or loss wouldn't be as critical.

Long ago I got tired of pulling out tubes and containers of creams and moisturizers so I now put them in these sample size jars. It saves a lot of wear and tear on my hands and it takes weeks between fillings.

Finally the flip phone has been replaced. The iPhone seemed so slippery and small when I started using it. Even a sensible shell case was not quite the answer. The one below is perfect. It's soft plastic, has nice curves and the beak makes a great backstop. 

iPhone in case

For my one "personal item" allowed in addition to my carry-on on for the flight I chose a backpack. It's roomy and easy to handle. That makes it great for hands-free shopping and carrying a computer, cables and rechargers.

On the trip I took my Tranquil Eyes in case it was too drafty or bright during the flight. Using them can help dry eyes with Sjogren's Syndrome.

So far the thing I miss the most while travelling is constant access to the internet. It's so hard to go back to former practices like "remembering".

Another plus on the last trip was a new suitcase with 360 wheels. When the floor is smooth it's a bit like walking a dog. So easy to push, even though it is still heavy. Now that I'm so ready to go it's Saskatoon here I come!

Wednesday, 6 November 2013

Sjogren's Syndrome Lectures

Sjogren's Syndrome is an intrusive illness to deal with and it takes a lot of searching to find answers. While looking for links to post I came across these lectures by Dr Arthur Bookman. He's the Director of the specialized Sjogren's Syndrome Multidisciplinary Clinic at Toronto Western Hospital.

The first lecture is called What Our Patients Have Taught Us and has data about the survey study done among patients. It's a large file with pictures of the Schirmer's test and more.

It's continued in the second file and is on a very professional level since  it is a teaching lecture.

You may find in reading this that you have to look for some definitions. That's an effective way to learn correct medical terminology. This helps your ability to discuss Sjogren's Syndrome with your doctor.

Virtual both for Sjogren's from WAAD. Booth and lecture are virtual

Health literacy is strongly connected to good outcomes in illness, so the more you learn the healthier you are likely to be.

If you like to read scientific studies and lectures you could follow @sjogrensca on Twitter. Sjogren's Canada tries to post a new link to a study or useful fact every day. I still find that is a good source of useful tips. Dr Robert Fox, a Sjogren's expert put that site together.

Saturday, 2 November 2013

Patient's Role in Healthcare

I participated in a tweetchat a few weeks ago about an upcoming 2-day conference that occurred in October. It was called the "Second Summit for Sustainable Health and Healthcare" and put on by the Conference Board of Canada.

As the chat went on I looked up the meeting agenda and saw no patients included; however today when I checked again to confirm my impression there was one! Dr. Sholom Glouberman, the President of Patients Canada, was the moderator of a panel called "From Beginning To End - Patient Centered Care". He certainly has credibility with patients after his years with the organization now called Patients Canada. 
From PatientsCanada #conf2013

The topic of sustainable health and healthcare ought to be deeply interesting to anyone who is ever a patient. Not only is everybody in need of care at some points of their lives, we are also the source of the funding.  Patients are the major stakeholders in healthcare.

Most of the people at conferences are in the healthcare field or involved in a health-related business. They are not penalized by loss of income when they attend job-related events. 

It is difficult for patients who are not affiliated with health organizations to pay high registration fees, and to take time off work to attend, yet I believe it is important to include them in conferences in ways that are affordable. 

Here's a link to a terrific post by Leslie Kernisan, MD Patients Not Included where she talks about patient inclusion and the MedX experience. She makes her points so well.

There are ways to help include patients to attend health events -- such as scholarships as offered by Stanford MedX, or Mayo Transform. Reduced admission fees or free admission as offered by some European conferences would also help patients to stay informed and engaged.

In social media we see a lot of discussion about the move to include patients in conferences and change initiatives.  As Paul Gallant of HealthWorksBCsaid during #cbochealth chat “Our health system is profoundly undemocratic. That needs to change.”

We need informed and health-literate consumers to be involved in healthcare to help to make it sustainable. 

I agree with Lucien Engelen when he says leaving patients out is just like people at your work having a big meeting about you...without you.

The movement to include patients as stakeholder partners is more evident in Europe and the US than in Canada.

Patient engagement is said to be the Holy Grail of healthcare – the equivalent of a blockbuster drug. Highly-engaged well-informed patients cost the healthcare system less money and tend to influence other patients towards better health.

Patients want to share, collaborate and co-operate. They want to transfer the knowledge they have gained through years of coping with health problems.

Patients need to be involved.  Doctor’s visits take at most two hours a year in total for people of moderate health. The rest of the time we are on our own. Self management is becoming essential to keep the focus on health, not treatment, especially in chronic disease.

Things work more smoothly and economically when patients know more and understand the system .

Also, patient involvement can trigger ‘aha moments’ for HCPs (Health Care Practitioners)

Changes in paternalistic attitudes may help to change patient behaviours and to empower and activate patients to spread what they learn rapidly and effectively, often 
through social media.

Patients are good at helping others cope with the small stuff in health care.  I wrote a post giving tips about injecting biologic drugs last March. It had more than 1,000 hits in one week alone. People value that form of narrative information. 

What do we do to increase the number of active patients? That's a question needs an effective answer.