I hope you will all join us at 4pm PST on January 28th for the KosAbility monthly meeting. Occupystephanie will be starting us off with: “When Love Comes With Burdens”, because no disability happens in a vacuum. It affects those who love us, as well. And the strains on a relationship can be severe. She says she will be “looking at my long intact marriage and what a sudden disability brought--both good and bad.” I’m looking forward to her post, and to the conversation that follows – because we all have things to share about how disability affects relationships.
In the meantime, I found a couple items online that I wanted to share. This first one is a follow-up to a series that the Washington Post did about those receive disability payments. It focuses on how individuals responded to the way that disability removes their “identity” as “hardworking Americans”, and how they attempt to adjust. It’s well worth reading in full:
http://www.washingtonpost.com/sf/local/2018/01/10/for-some-receiving-disability-benefits-the-desire-to-work-will-never-cease/?utm_term=.72d635f787a5
For some receiving disability benefits, the desire to work will never cease
I know that I’m often yearning for the old days of being part of a working team, and every now and then I hear about a company or a job and the part of me that forgets (for a moment) that I’m disabled, leans in eagerly and thinks, “I could do that”... then I remember. It’s not easy, even when there’s some volunteering to fill the gap.
Here are a couple posts from the National Pain Report, a website that focuses on how chronic pain affects us. There’s generally some thought-provoking pieces there, though I don’t agree with all of them (of course).
http://nationalpainreport.com/chronic-pain-community-finds-a-new-warrior-8835248.html
When the National Pain Report ran a story on the Pain Advocacy Coalition it elicited immediate and positive response from our readership.
The Pain Advocacy Coalition is an online chronic pain community that is using digital tools to lobby Congress and their state Governors on what it perceives to be the unfairness of the CDC Guideline on Opioid Prescribing on pain patients.
http://nationalpainreport.com/a-look-back-at-2017s-top-fibromyalgia-news-and-research-8835202.html
.. 2017 also brought the hope of two new fibromyalgia treatments while another potential drug failed its clinical trial. And, of course there are themes that carry over from year to year: the ongoing assault on opioids and the slow drip, drip, drip of fibromyalgia research.
And finally, the news last week that the Administration is changing the rules about how states can structure Medicaid, including requiring “able-bodied” to find work before getting Medicaid. Many are worried that the worst of these states will twist the definition of able-bodied and/or require the kinds of “proof” that isn’t easy to come by:
Hope to see you all on the 28th at 4pmPST/ 7pm EST!