I’m 43 years old, husband, father, small business owner, radio DJ, podcaster, and I have Multiple Sclerosis.
I created the What’s The Matter With Me? Podcast to share what I’m going through.
I believe in using the transformational power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Each person is an artist.” In the words of the Spanish poet Antonio Machado, “Wanderer, your footprints are/ the path, and nothing else;/ wanderer, there is no path,/ the path is made by walking.” My work consists of public interactions that create new conditions in the community.
I have multiple sclerosis and that affects my life and work in many ways. I am the host of What’s The Matter With Me?, a podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.
If each person is an artist, and we create the road by walking, then it is up to us to create the world we want to see.
We had a Sunday itinerary- birthday party, BBQ and baseball practice. I am accessing my affinity group.
Welcome to What’s The Matter With Me Podcast Season 6, Episode 11 “Affinity Group Hang,” There’s lots of things going on. I’m getting out there, even further out than I was already.
West Elm couch backordered until August
The liquor store is out of things too
Shout outs to Kevin in Wisconsin
I’ve only got anecdotal info on a stem cell treatment for a friend of a friend who had pretty severe MS. He had the stem cell treatment and was feeling great for a while, but it’s been a few years and his condition has worsened.
I don’t usually do something unless my doctor recommends it, because there are so many different things that people recommend that it’s pretty hard to make heads or tails of it
Shout outs to Brook, and to Eric & Tracy who listened to the thing on a drive, they binged it
https://whatsthematterwithme.org/wp-content/uploads/2022/03/affinity-group-hang.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-03-25 19:05:162022-03-25 19:33:48Affinity Group Hang
Received: 3/14/2022 11:14 AM PDT Dear John, This IGRA result proves you have developed Tcell immunity to the COVID coronavirus. Great news, congratulations, Very best of health, (name removed)
Agnes Martin legal ID for KFJC- rules for legal identification
I saw a couple of people at the supermarket. She had one leg- He did not appear to be disabled- They were punks- They both had jean jackets- He had a black net back ballcap- She wore one Doc Marten- she drove and kept a folding wheelchair behind the driver’s seat- I regret not meeting them
I made the choriço, white beans, and kale- I used pinto beans & Goulart’s chorizo
https://whatsthematterwithme.org/wp-content/uploads/2022/03/wee-man-has-friends.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-03-09 22:40:282022-03-09 22:40:30Wee Man Has Friends
https://whatsthematterwithme.org/wp-content/uploads/2022/03/how-did-you-spend-your-presidents-day-vacation.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-03-01 01:27:482022-03-02 17:54:26How did you spend your President’s Day vacation?
Her talk centers around the idea that most people don’t see invisible disabilities
What matters is not how other people react to me, but how I present myself . I control what I can control. As ability changes, what you can control probably also changes
The frustration of becoming older and having your opinion be drowned out by a bunch of younger people’s opinions. Being disabled is similar in that your opinion is drowned out by more able bodied people’s
I heard Noam Chomsky’s podcast “Anarchism“- Noam Chomsky has a gravelly voice
Rockstacker & Condor: East San Jose characters. rockstacker.com is a thing
Olivia Lerner called chronic illness people “spoonies”
I like the old-school rapper Spoonie Gee
Spoonie Gee “Spoonin’ Rap“. I got that on twelve inch at Jerry’s Tecords in Pittsburg. RIP Jerry. went there in fall 2000, that was a dope record store. the worlds largest all vinyl record store. Jerry Weber died two weeks agar at 73
Used to play “Spoonin’ Rap” with Rick James “Cold Blooded” crunked out- those were the days!
Thinking about buying a case of Bordeaux and eating steaks every night because of this stupid ad
My stats showed and there are people listening to sequential episodes and on the one hand I’m like, don’t listen too close
https://whatsthematterwithme.org/wp-content/uploads/2022/02/confronting-the-invisible.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-02-17 00:03:412022-02-17 00:05:00Confronting The Invisible
Went to get tested for antibody response and I got the results back and it seems like I don’t have very many antibodies. I sent it to my MS doctor and asked her what it meant
https://whatsthematterwithme.org/wp-content/uploads/2022/02/rinse-or-no-rinse.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-02-10 02:38:542022-02-10 02:41:33Rinse or no rinse?
last borscht thing: Matt came over and had lunch and he said “it was the best borscht I’ve ever had.” Nami was there
not like he’s Lithuanian or anything.
I think Lithuanians eat it cold
Steve was talking about white borscht
Shout outs to Nathan Mary Butters and Tibby- thanks for the catnip hot sauce
Very Stable Genius is a good neck tattoo
I went to reddit to see if there were any posts about Epstein-Barr causation and there was only one in the Multiple Sclerosis forum and the study was met with an ambivalent reaction
We had white beans, kale, and dry chorizo stew. i talked to the butcher about the dry chorizo — joe: “is it chorizo, or is it choriz?”
https://whatsthematterwithme.org/wp-content/uploads/2022/01/mvd-update.jpg14001400Johnhttps://whatsthematterwithme.org/wp-content/uploads/2021/03/wtmwm-2021-Copy.pngJohn2022-01-26 17:37:582022-02-11 20:26:48MVD Surgery Update
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