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.

Informed Consent

It was great to see a conversation about informed consent taking place at Stanford's MedX Conference on September 18. I have  put these tweets in a storify called Informed Consent at MedX. It's an important topic and I was happy to collect them in one spot. The MedX stream went so fast it was hard to get much that is verbatim.

Here's my view on some aspects.

In surgery you expect to know what is going to be done during your operation. Consenting to a procedure based on the expected results is not good enough. For instance for a forefoot reconstruction I don't think it is adequate to be told that your toes will be straightened. For my first operation the only way I was aware of the actual procedure used on my toes was to read the file. The only reason I was able to was that I was left waiting in a hall with my file and nothing to do. Needless to say I was surprised.

                                        Imagine this is me in the hall

That happened years ago but it is a more recent example of how not to do Informed Consent.  For this situation I can almost visualize a Walking Gallery jacket. I was having a toe shortened so I would be able to wear shoes more comfortably. Once I was sedated and lying on the gurney outside of the operating room the surgeon came out for a talk about the two possible methods he could use to do the procedure. As a sedated 'people pleaser", I chose the method that was easier for him and signed the consent. I still have to look at the results every day. It's not pretty. Now only doctors and students see my feet.

                                     (and everyone else  in the world)

In market research we often worked on projects for banks about credit card holders. Basically there are two types of customers. Transactors who pay in full every month and Revolvers who pay less than the balance. You might wonder how this relates to informed consent? 

I found a study about consent stating that many doctors look at the informed consent as a transaction, not an ongoing process. It is something that needs to be dealt with because of potential liability. The idea that it is part of patient education has passed them by.

The whole abstract of this interesting paper is included here because the points the points the authors make are so significant. 

Beyond Informed Consent: Educating the Patient
Lawrence H. Brenner, JD, Alison Tytell Brenner, BA, and Daniel Horowitz, MD

Based upon our interpretation of the literature and experience, we make the following recommendations: (1) The informed consent form is not a substitute for educating a patient. It is merely evidence that appropriate discussion occurred. In addition to assuring that the patient has signed the informed consent document, these discussions must occur. (2) The forms should be designed to be understandable, and all care should be taken to ensure that comprehension is achieved, and the process should be viewed as a tool to educate rather than waive liability. (3) The surgeon should avoid the paternalistic approach in dealing with uncertainty and, instead, use uncertainty as the foundation for forming a therapeutic alliance. (4) A well-educated patient does not need to be presented with an exhaustive list of every conceivable complication. Rather, an educated patient needs to be an active participant in a dialogue about the inherent risks of the surgery that are important to the individual decision-making process, ie, the risks that are specifically of concern to that patient. For example, the complications of hand surgery may be more material to a concert pianist than the average patient. (5) An understandable note in the medical record that a discussion has occurred with the patient and/or the family may be far more effective as evidence of the discussion than a lengthy signed but incomprehensible form.

Forefoot in Rheumatoid Arthritis (RA)

With RA you may develop problems with your feet.  The first part of the foot affected is usually the ball of your foot and the toes.  

                                               fitterfeet.com
Before I knew I had RA and while I was looking for a diagnosis my hands and wrists hurt very much, but the most painful symptom of all was sore feet.  Even though I could barely get out of bed in the morning, I continued to think the underlying problem was just too much standing, walking or chasing after my children. 

Once I got a diagnosis I already had damage to the joints of my feet.  The balls of my feet hurt because the fat pads that cushion those bones had migrated. That pain is called metatarsalgia. To deal with this, when it is not bad enough for surgery, you can use a metatarsal pad in your shoes.  

                                     walkwellstaywell.wordpress.com

My toes had started to drift to the outside. This led to a lot of pain and great difficulty finding shoes.  I was always limping and my co-workers probably thought I was faking because one day the limp was on the left and the next day on the right.

My rheumatologist referred me to an orthopedic surgeon.  I had to wait for an appointment because I wanted to have a foot and ankle specialist as my surgeon.  It is a distinct specialty and they are in short supply. My friend had hers done by a general surgeon and it needed to be fixed again.

The doctor recommended a forefoot reconstruction.  It sounds dramatic and it felt that way too, even though it was only day surgery.

You can read all about this on Wheeless' Textbook of Orthopedics but you will need to look up a some of the terminology unless you are very well versed on anatomy.  I looked for pictures of my foot to show you but none of them looked like good examples.  Lots of pictures show bruises but there are no good before and after photos.

This was the first operation I ever had for RA and it made walking easier.  I almost wish I still had the shoes I used to wear so I could show you how they had changed to accommodate my feet.

                                       SophieCrumb.blogspot.ca

My closet has no cool shoes to gloat over.  New Balance is my preferred brand because I like a lot of room for my toes. I would rather walk well and pass for normal than limp everywhere. There is lots of room in my shoes for orthotics, which have been vital to keeping me walking well.

I have now had a forefoot reconstruction 3 times. The technique  has changed the from the first time it was done 20 years ago. In the operation as it was done in the 90's, the surgeons remove a lot of bone at the metatarsals and the lower joint of the toes. People ended up with what the doctors called "floppy toes". 

Now they use pins in the toes to let them heal nice and straight. That method does leave your foot looking much more normal.  In my case though, the toes did not fuse well on the right so I needed to have the surgery redone on the four small toes.

Overall I would have these operations again because of the pain relief that I got from the procedures.  

Here's hoping your feet stay fine.  It is inconvenient to be unable to put weight on your foot for 6 weeks, even though it doesn't hurt much after week 1.

A Past Foot Surgery

You may have guessed that it is always the feet.  If you have trouble under the ball of the foot and with the toes that's the forefoot and it is very common in RA.  When I had the first foot operated on it stopped my limp which is great because limping can affect the alignment of the hips and hurt the knees.

It's been 10 years since the second foot was "reconstructed"  That's what they call it.

It is not an elegant solution but was very effective.  Function matters more to me than looks and not many people actually look at your bare feet unless you live in a warm beachy area where sandals and flip flops are the norm.  My RA has lasted a long time though and with all of the better treatments we have now, fewer people have the joint damage you often saw 20 years ago.  Plus the technique has improved so your toes end up straight. It is said to be more "cosmetically acceptable" to patients.

The last operation was not really successful so it was redone.  Who would think that you could have 3 forefoot reconstructions?  It's day surgery but 6 weeks no weight bearing.  I actually bought my own crutches.  They're called platform crutches and good if your hands are weak.  Your forearms takes the weight.  Here's the link to a sample picture - they are hard to visualize

http://www.walkeasy.com/shop/product_details.asp?ProductCode=410

I ordered them from a home healthcare store. These are so much easier to use when your hands are weak  and your joints are damaged.