Saturday, 10 November 2012

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.



  1. What a lovely tribute to your friend, Phyllis. I'm sure she would be smiling. I still find it astounding how it's possible to make a difference to people you've never met, and I would like to do that as often as I could before I left this green-blue world.

    Her story is indeed a stark example of the futility of worrying about the rare but more deadly outcomes of a chronic disease. That doesn't mean we won't do it (!!), but I think we worry less.

    For myself, I have been slowly turning to Buddhism (I'd describe myself as very open in my spirituality, from my early days in Baptist Sunday school to where I am now). I like the focus on compassion for others and for self. I like the focus on present moment awareness. Practising this stops me worrying about what could come down the road in the future.

    The further I progress in my treatments, the more I feel quite futile in where medication can help me. I mentioned to you that I had been trialing 5-HTP and L-tyrosine for my depression, but the load of 20 pills a day is becoming more than I can bear. I'm honestly considering returning to finish off my prescription of Prozac (I no longer have a drug plan), and perhaps making it into the new year feeling well enough that way. I don't know yet if the naturopath has something else I can try.

    Today, terrible pain developed in all my joints. This does happen every year, but I can't see why today was any more special or any more cold for the pain to begin like this. Again my thoughts turn to just being in this day and not imagining how the pain can get worse.

    LOL I love your reminiscences on your first computer. I dropped out of one of my first jobs when my illness first developed in 1990. I got a $1200 stipend for accumulated holiday/sick leave etc, and I bought my first computer. It was just an IBM clone, a 286 and it ran DOS 6 and the first Windows 3 for workgroups. I was fluent in DOS and also ran a UNIX simulator on it. That was one of the highlights of those days.

    I look at where we are now, and I'm so glad that I can talk to you across the country like this, and indeed, to people around the world. It's a real blessing.

    Take care!

  2. Maybe my next post should be about the circuitous path by which market research about the Atari and Vic20 totally changed my life. As I age I find I have more long stories and fewer people to share them with. When you start with the stories the not so pretty underbelly always stays hidden and you stick with the main theme in the interest of brevity and making a point.

    Phyllis was a real stalwart member of the group. I saved her recipe for Italian weddiing soup in the hopes I would make it one day.

    I'm almost surprised that we have no more 286s here now. Did you ever see the PET computers in the schools? That was 1977!

    Those 20 pills a day sound like a lot to swallow. I have heard of L-Tyrosine, not so much the 5-HTP. I have very little inclination to go natural for anything related to illness beyond eating well, exercising and a big heap of vitamins. Could you try Nsaids for joint pain ot have you been there, done that?

    The Sjogrens Society of Canada has an interactive training session for support group leaders and contact persons tomorrow at 12:00 noon est. I am on the board so will participate iin that. I hope it works. It will be a first and I only mention it in case you might be interested.