Pathways to knowledge

Turkey season is coming. Here is a picture that my friend Phyllis took of  "The Bird Itself" in her driveway in New York state. It scared her a bit. Look at that face.

Phyllis was an avid gardener and was part of a Yahoo RA group called RA-Factor that I have been in for the last 10 years. Needless to say we have all grown close. People come and go depending on circumstances but many of us stay with it for the support, information and for the freedom to complain about RA to people who understand the issues and do not take it personally.

She was the first person to offer advice and she enjoyed telling stories about Mr. Sticky Fingers - her grandson, making tags for people and sharing advice with the group.

She started feeling unwell in general with a cough and a cold, a headache and back pain.  Her doctor suggested bronchitis and gave her an inhaler and prednisone. It was not the first appointment she had that was inconclusive.  With RA it's easy to assume that any issue is connected to the inflammatory disease.  It turned out that she was fatally ill and died a few years ago.

So this is a reflective post.  I remember reading about morbidity and mortality in RA on the American College of Rheumatology website years ago when I was avidly searching for information. That was depressing though I know the outlook is better now.  I kept finding new complications and issues that might occur, but managed to keep my anxiety level low by doing what doctors call watchful waiting.  So I watched and I waited and nothing ever developed.  That was one good way to make the anxiety level drop, even though it took many years. 

I think anxiety is a real problem with a chronic disease and knowledge is a good way to dampen it.  Things have improved in access to information. When I was diagnosed 30 years ago if you wanted info the sources were magazines, newspapers or books. Of course doctors were a possibility but I was feeling so shocked that I had trouble absorbing what the doctor had to say.

The internet has been a big help to me.  It has made me much more informed and has speeded up my treatment because now I know the vocabulary and which questions are the right ones.  It also helps me to know the treatments and what to expect if the medications are working.

  

                                                                                    Merrimack Pharmaceuticals
                                                                     Pathways to Knowledge

Now there are so many pathways to find the information that you need.  It's like going from the horse and buggy to a spaceship - from library books to 30 gigabytes.  Our first computer was a Vic 20. That means the memory was 20K and I think it had 3K of RAM.  We could play Pong and it was fun.

We still have one of these in the basement

It was an exciting learning experience but still a long way from social media and smartphones.  So I would say we've come a long way in healthcare and every day we see the results of the progress.

Support and information is now available at any hour of the day or night. That alone is enough to help us all to feel a bit better.


                                                 

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.