POPAN Pain Summit

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I haven’t been doing much writing lately because 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.  And I was so fatigued that I could hardly move off my couch. 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 broken up with radiation this past Monday.  It wasn’t a bad procedure but the anesthesia knocked me out a little.  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.

Pain is not often associated with MS, however every person I know with a diagnosis of MS is living with some sort of pain. Most of my pain is related to the spine problem I have had for 45 years, although it has been aggravated by nerve pain and spasticity, which are associated with my MS.  

Pain may not be the most prevalent MS symptom or the one that is the most disabling for many people, but those in pain have a right to expect effective treatment for this symptom just as you would for any other MS symptom for which there are treatments, which is why I often write about these topics in my Share Posts.

I attended the Pain 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.