"It could give me two heads and I'd still try it"

This title is  from a research paper called Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication – “It could give me two heads and I’d still try it!”   The research that went into this paper centers on patient experiences, attitudes and expectations about the information they receive before they start anti-TNF therapy. As soon as I saw the comment I loved it.  It made me think of my pre-TNF self.

                                www.the-rheumatologist.org Fatigue in RA
                                                   ACR/AHRP Annual Meeting 2012     

This was my experience making the decision about biologic drugs:
Six years ago I was managing to work full time and that was about all I could do.  When I came home from work I was too tired to do much more than lie on the couch and stare into space.  

I did manage to keep looking for information online and I read the results of the Premier Trial and others that were similar with great interest.  Among the articles I read, the conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function.  What appealed to me most was that biologic drugs were said to give an increased sense of well-being, better physical function, and to decrease erosions and joint damage.

                                   news.com.au     Sense of Well-being

After reading these conclusions it seemed to me that life could improve with more aggressive treatment. Next I had to convince my doctor that this was necessary. With physical symptoms of fatigue and inability to expend energy my life was limited.

It took a few appointments to do this, which in RA terms translates to more than a year.  I had to "fail" on another DMARD so that the insurance company would be satisfied. If it had worked it would have been great but it didn't.

I really wanted to be taking something that would give me a better quality of life than I had at the time.  Over the course of Rheumatoid Disease I had tried almost every DMARD and most made no difference to my RA.

The study mentioned above was qualitative and the conclusions that were reached came from analyzing data and comments from focus groups. The people who participated made comments that made sense to me.  The study about patient's perceptions that talked about a sense of well-being was also qualitative, so that information came from patients as well.

Well-being is not something that is asked about in the Rapid 5 and HRQL (Health Related Quality of Life)  measurements.

Here's a quote from a rheumatologist on this topic: 
"In recent years we have been discussing the need for a broader approach to treatment--such as in addition to measuring disease activity, measuring structural changes and functional impairment--which may help physicians and patients mitigate further irreversible effects of the disease." said Dr Edward Keystone, Professor of Medicine, University of Toronto, Canada.

You Look Sick

Though it is frustrating to have people say that you don't "look sick" with your invisible illness, imagine the opposite.  Frankly my ideal would be a "You look marvellous" comment made to me and my healthy body. 

                                      www.musicstack.com

My good friend, who I have never met in real life, has had news that her health is worsening.  I call her my RA twin because we are alike in age at diagnosis, RA affecting our hands and feet, and Sjogren's Syndrome.  We're also nearly the same age now.  She has had a lot of doctor's appointments lately and here is her reaction to reading her file.

"...I got copies of all the tests and reports that the clinic is sending to my primary care doctor.  Well, on the notes under General Appearance the hep noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of r/a can make you look sick. I'm sure I will mention this to him when I have my appointment in May.  I mean, there is another way of saying this, isn't there?"

So that's part of the downside of reading your medical records.  Comments that veer from being strictly medical are the sort of thing that you just don't forget.  I had a similar experience when I was first diagnosed. I opened my file and found myself described as a pleasant woman who was "somewhat obese."  I was shocked.  It was a "there's a pain that's going to linger" moment.

                                    Ed Grimley at CrazyCramers.blogspot.com
Some of our medications may eventually take their toll. My friend now has early cirrhosis and lung issues.  

Of course this may be a lack of preventative care through the course of the disease, but her pulmonologist and hepatologist are saying that methotrexate is the most likely reason these new problems have developed.  That won't stop me from taking my medications but I think now I will start being more suspicious of what I would usually dismiss as just the flu or a cold if it persists.

                                      methotrexate en.wikipedia.org
In my quest to educate myself I found a number of terms that have made me uncomfortable or angry.  One has to do with surgery for RA hands and feet.  It was often referred to as "salvage surgery" and I see the sense in that, but my first reaction to seeing the term was anger and discouragement.

Chronic disease is not for weaklings, and we know it.  We have to adapt and deal with things we never anticipated coming onto our radar at all.

                                        en.wikipedia.org
I've got a long history of surrounding myself with toys and cheerful things.  That's why the next picture is a beautiful chicken.

                                         Polish Chicken

The language of medicine. An article from PMC

Forefoot in RA

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

                                               fitterfeet.com
Before I knew I had RA and while I was looking for a diagnosis my hands and wrists were very sore, but the most painful symptom was sore feet.  Even though I had trouble getting out of bed in the morning I thought the underlying problem was just too much standing and walking. 

Once I had 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.

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 with bruises but no good before and after photos.

This was the first operation I ever had for RA and it made walking easier.  I 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 them for orthotics.

I have now had a forefoot reconstruction 3 times.  They have changed the technique from the first time when they took out a lot of bone at the metatarsals and the lower joint of the 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 that way so I needed to have it redone on the smaller toes.

Overall I would have the operations again because of the pain relief that I got from the procedures.  Here's hoping your feet stay fine.  It is inconvenient to have a non weight bearing foot for 6 weeks.

Your mind vs your body

Sometimes you wake up and plan the things you want to do and your body does not agree with the plan.  It seems like your body is the bad twin while the angelic one in your brain is giving you goals to achieve that are good, sensible and forward looking.

It doesn't matter how much I tell myself it's not my doing, it's the RA.  Even though I have a good reason for rationing my energy I still have that sense of being haunted by the things I am not doing.  

Self preservation and pacing is necessary, but even after all this time I don't always convince myself it's true.  Deep down I still feel that I can do anything - it's just that when I do what I think I can do or should do, then I pay for it for days.

Too often before you can even make a good start on an activity your body quits on you. It has many ways of forcing you to do what it wants.  In fact it has the upper hand.  The brain may be the controller but the infrastructure (body) needs to be sound for you to carry on.

So while we sit where the body put us we can wonder about these points:

1. Do I get so little done because of the activity of my chronic disease?
2. Is the  illness worse and making me more tired?
3. If I exercised more would I have more energy?
4. Was I always lazy?  (Note: Reading and eating peanuts was my favorite pastime when I was 11. May have been a bad sign)

RAcanuck put this another way in her blog post:

 "After a while your head can get kind of abusive towards yourself, you should be doing that! Why can’t you do this? It’s like a complete separation between what the disease does and what your mind thinks, is it because our eyes cant see it? or because we feel it and we’re ignored and discounted by most? I and surely most folks were taught to not be lazy and to get things done, it’s not a bad thing really unless you end up with AI disease. Then you're stuck on that mindset and your body is stopped in its tracks, the two don’t jive really."

Before you get too discouraged think of the points made in this article titled  Consequences of the inflamed brain

"sickness behaviors...are not symptoms of weakness induced by the infection, but rather are an organized set of changes designed by evolution to keep the organism (you) from foraging and thus being subject to predation during a time of weakness"

                                       care2.com
I also found another paper titled Fatigue In Chronic Disease which is helpful despite being published in 2000.  Fatigue needs more attention.