Your Life Vest Is Under Your Seat

Coming home from vacation this notice was in front of me for five long hours on the plane.

Every time I noticed it I was reminded of an article I read recently called "Sitting Is the New Smoking".  

 

That article along with the instruction in the plane "Your life vest is under your seat" should be a wake up call for all of us with sit-down jobs and/or online obsessions.  

Getting up and getting moving is the new life vest!! It's under your seat. You just have to get up and use it.

 

I talked to my sister about linking these two thoughts. She said "It's a stretch," which is also exactly what we need.

You have to get up and walk around to save your life.

This is even more important for those with chronic illness and more so with a musculoskeletal (MSK) disease. There should be a special pamphlet given to MSK patients with a warning, similar to warnings on cigarettes.

 

amckinnon   Suggested for knowledge transfer brochure

When I was diagnosed with RA years ago fatigue and pain were always with me. It seemed totally logical not to stress my joints or to do more than I felt was possible. After fifteen years of very little exercise it should have come as no surprise that my bone density was decreasing rapidly.  

BUT it was in fact a huge surprise. I know the doctor can't tell you everything at diagnosis but I would have expected some health care professional to tell me the facts: Since RA affects the bones there were steps I needed to take to prevent osteoporosis. Some of these steps could include taking calcium, doing some type of exercise to help my bones and taking vitamin D. 

My first reaction, after shock at another diagnosis, was anger. Why did I not know this? Maybe I was reading too many mysteries and not enough medical information but "what the doctor knows" was not readily available before widespread use of the internet. What I knew about my particular area of chronic illness I found in magazines and the newspaper.

It just never hurts to state the obvious. This is why a more co-ordinated approach to treating inflammatory arthritis, like Dr. Irwin Lim's clinic in Australia, is such a good idea. As you see from the link he has a vision! 

Here's another post from Dr Lim about osteoporosis in case you want to know a little more.

 

knitted by Cathy Beattie

With a shortage of rheumatologists internationally, and so many of us with prioritized problems and lists of issues longer than our appointments, we need to coordinate with those wonderful people known as allied health care professionals. That would include physiotherapists, occupational therapists, dieticians, orthotists, exercise physiologists and others.

When you read medical advice that suggests a team of healthcare professionals can be a big plus with chronic problems, one of the groups they were thinking of was people with musculoskeletal problems.

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.

Patient Partners In Arthritis

There's an ongoing discussion among patients about the education of doctors.  Considering how many people see doctors for musculoskeletal (MSK) problems, and how frequently these visits occur, I think it gets relatively little time in medical school.  Certainly when it comes to awareness of Inflammatory Arthritis there's a long way to go to raise the knowledge level of everyone out there.

To help improve awareness of various types of arthritis among medical professionals there has been a  nonprofit program called Patient Partners in Arthritis used in Canada for the last 17 years.

The patients who volunteer must have a confirmed diagnosis of arthritis and feel comfortable talking about their disease and interacting with all levels of health care providers. They complete an in-depth training program that prepares them to demonstrate joint examinations and provide a real life medical history that illustrates the problems and issues that arise with both osteoarthritis and inflammatory arthritis.  That covers a lot of ground.

                         Patient Partner member ready to participate

Everyone knows the value of a good story. You see stories everywhere from commercials to mystery novels. They add interest to dry facts (and bones). 

                                            Bones of the hand (Toronto Western Hospital)

I joined Patient Partners and I think that right now I am the newest member.  I have learned a huge amount from the training and from the rheumatologists who are present and contribute to some of the Patient Partner sessions.

Currently the program is used in 10 Canadian universities as part of the MSK education of medical students, residents & other health care providers like nurses, occupational therapists and physiotherapists.

"The program is based on the principle that arthritis is a chronic condition and people living with it are often the most knowledgeable about many aspects of the disease." (from The Arthritis Society website)

It has helped me to gain confidence about my knowledge of anatomy and most days I participate I learn new facts.

The Patient Partners training is led by the same person to provide consistency and reviews are done regularly to maintain standardization. 

In a typical session Students learn joint examination techniques and are able to see and feel the joints of patients with a variety of MSK problems. The students realize the impact of arthritis better with a personal story along with the feel and look of damaged joints and restricted movement.  Feedback from students indicate that it is a better learning tool than pictures or a didactic lecture.

The last time I saw my orthopedic surgeon, the Fellow who was working with him had encountered the program in the Maritimes several years previously when he was a student . He remembered the session well.
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One way used to demonstrate the feel of an inflamed joint is through the use of chocolate covered almonds and grapes.  No surprise to my fellow patients to hear that it's the squishy grape that feels like an inflamed joint.

Grapes from ThirdAge.com                

This is a successful 'hands on' Canadian program which I wanted to spotlight.

It Used To Be Different

I have had RA for 30 years now.  It took me a year and a half to get a diagnosis and that was the worst period in my life.

First and worst was the sore feet.  At the time I worked in a bank and assumed that being on my feet all day was the problem - that and having 2 very active boys at home.  My feet got more and more sore as time passed.  I felt like the Little Mermaid when I got out of bed in the morning - as though I were walking on knives like she did to become human. When the symptoms were at their worst I crawled to the bathroom.

                                                    From NRAS.org.uk

At the same time my hands and wrists were sore, hot and swollen.  Eventually I wore elastic bandages (like you use for sprained ankle) on my wrists at night in the hope of some easing of the pain.  And I have talked before about the "miracle" weight loss and total exhaustion. A systemic illness like RA causes weight loss - how could I have thought it was the switch to Diet Coke?

When you feel that bad it is hard to think of solutions and harder yet to act on them. I tried 2 different doctors who were unable to help.  Finally, at the end of my rope, I went to the foot clinic at my local hospital.  The orthopedic surgeon on duty had residents helping him at the clinic.  They came first and had a variety of theories but when the Dr came for a look he listened and told them this: "Send the lady for a blood test."

And there it was.  The answer to the puzzle and a quick referral to a rheumatologist.  The new specialist was on vacation so the anxiety level rose but eventually I saw him.  He pulled out the famous treatment pyramid and explained that since I had 25 active joints and a very high ESR as he could see from the blood test we would start near the top with an aggressive treatment (for that time).  That meant gold injections.

And here is a difference between then and now.  Rheumatology actually had hospital beds allocated to it and I was admitted to the hospital for 3 or 4 days for blood tests and monitoring of the treatment.  

The centerpiece of this stay though was the education component.  I talked to the pharmacist and the nutritionist and was fully exposed to the occupational therapy and physiotherapy options available. 

I was given exercises for hands and body by the physiotherapist and occupational therapist and learned joint preservation techniques. We tried out a paraffin wax bath for the hands. It feels wonderful for a while after you have it but unfortunately the effects don't last. 

Model of foot sitting on orthotics

I was given a life saving prescription for orthotics and ideas for utensils to make cooking easier. And  how could I forget my trusty splints - they have been invaluable to me for all these years.

Resting splint to wear at night

This was all a big help in trying to restructure my life after I went home again.  It was reassuring to have a plan - still very depressing of course - but so necessary in the time before internet.  

It felt like there was a ready made team that would help me and that helped to make me feel less isolated and unsupported.