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 woodworkingdownunder.com/freedollhouseplans

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 but....my 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 others...so 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.