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