Annual Pain Summit

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NOTE: I am attempting to link websites to my Post. Please bear with me if this doesn't work, I will keep trying until I get it right. Thanks for your patience.

I haven’t been doing much writing lately as I haven’t been feeling too well. I have, however, read and enjoyed many of the other interesting Share Posts during this time. Thank to all of you who continue to write such stimulating and in formative Posts.

 It is difficult to have to accept that there are times when I just cannot meet all my commitments, especially when my life is so pared down from what it was like when I was working in higher education and involved in other activities.   I am very disappointed when I cannot meet my own lowered expectations for what I want, and feel I should be able to do.  This time it was a double whammy; the pain in my back was worse than it has been for a very long time and I worried that my Intrathecal pump might not be working correctly, and the double vision I have because of my Multiple Sclerosis became very blurry and made me dizzy on top of everything else.  Thank God my pump was fine and I just needed to give my back some time to feel better, and over time my vision was less blurry, although still double. I began to slowly gain back some energy just in time to have a large kidney stone irradiated this past Monday.  It wasn’t a bad procedure but the anesthesia knocked me out for a few days.  I am happy to say that I am feeling much better and can now report on the Power Over Pain Action Network Summit I attended last month.

I attended the Summit in conjunction with my new position as a volunteer Advocacy Spokesperson for The Power Over Pain Action Network (POPAN),,  a program of the American Pain Foundation (APF), which I wrote about in previous Share Posts.

The Summit took place June 11-14, in Minneapolis.  There were very full, educational sessions on policy issues threatening the ability of people in pain to receive the most effective treatment and how we volunteers can best advocate on behalf of POPAN and its constituency, the millions of Americans living with pain. 

We started on Thursday evening and continued from 8:30 a.m. to about 8 p.m. Friday and Saturday, ending with a wrap-up session on Sunday morning.  It was a pleasure to attend something organized by people who understand pain; there were cots in the back of the meeting rooms in case someone needed to lay down, and we were encouraged to get up and walk around during the sessions if we were in pain.  In fact, on both Friday and Saturday I had to go back to my room for an hour or so to lay down and let my back rest, and everyone understood and encouraged me to do what I needed to remain comfortable.

 No feelings of guilt, shame, failure or embarrassment associated with having pain and needing to take care of it at this conference!  There were people wearing braces, on crutches, using motorized scooters and wheelchairs, and accommodations were made, nicely, for all these needs.  I don’t think I apologized more than a few times for using a motorized chair, and then only when I bumped into someone or something.  I find I apologize much more frequently when out in the general public with my scooter or chair, and often then it is just because I exist, not because I have caused anyone a real problem.  What a difference a little bit of understanding can make!  How nice not to have to feel stressed about using assistive devices to enhance my physical abilities.  Thanks to the organizers of the Summit for all they did to make us all comfortable and for working with the hotel staff to minimize any problems.