WTMWM? – S2, E7: Wacky Wednesday

  • Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 7: Wacky Wednesday
  • My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through
  • The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice.  If you need medical advice, ask your healthcare provider.
  • Find us on Facebook and for goodness sake please rate us.  Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org

Shoutouts

Shout-outs to Liz who is a DJ at the radio station where I host a radio show on Thursdays.

Infusion

I had my primary MS medicine infusion a few days ago. They hooked me with the IV,  gave me steroids, also knocked me out. I came home and had to make food which was hard to put together because I was wiped out. I need to call a car or something. after infusion i’m toasted. The next morning I woke at 4:30 AM, my torso burning up. Nauseated. Maybe my appointment time was too late in the afternoon, and I got more or less hungover.

/r/MultipleSclerosis fail

I posted about this podcast in the multiple sclerosis subreddit.  I asked people to post their favorite multiple sclerosis podcasts.I was looking for inspiration– I want to find material that I can relate to.  I got several responses but the first stood out.  
So here’s what I asked: “Please post your favorite multiple sclerosis podcast here! It can be a single episode or a series- I’m looking for inspiration.
For my part, I’m a 38 year old husband and father, small business owner, and I have MS. I’m just trying to make it.
I started my own podcast because I couldn’t find podcasts that featured somebody speaking from our perspective. It’s called What’s The Matter With Me? and you can find it on Apple Podcasts or at whatsthematterwithme.org
What do you all listen to? Thanks, John”
From TornaydoTornahdo: “I would never listen to a podcast about MS. I can’t think of anything more depressing than listening to people talk about that in my free time. I already have enough problems related to it. Having it be a presence in my fun/pop culture/whatever time isn’t ideal.  I know other people do want stuff like that, so I hope you get a lot of listeners.”
I think this person was being honest and trying to look at it from both sides, and I appreciate that.  Nevertheless, it’s always rough to get your first response a strong NO. Unfortunately, as the responses came in, I didn’t find much inspiration: no patient-produced material, just information about What Is MS? and like that.  Informative, but not inspirational. It was kind of a let-down– People always talk about Reddit like it can change the world, So maybe I set my expectations a little too high. There is probably another way to go about it that will yield better results.  Because I don’t think this podcast is depressing. I think it’s the story of trying to overcome obstacles. I am a disabled person and because of that, my voice is marginalized. I gain power through the use of my voice to tell my story. Listeners, some with MS and others without, continuously reach out to report that listening has inspired them, offered a new perspective or made them feel better.  I am thankful for that.

Time To Replace My Ankle-Foot Orthotoic

I need a new brace – the straps keep coming open, it’s hard to keep them fastened because the brace is past it’s lifespan.  It’s a carbon fiber brace, and when they are new, they feel very springy but as they get a few years old, the life seems to go out of them.  It’s got dings and scratches, and one of these is developing into a crack. I have an appointment to get it looked at in a couple of weeks.

Can you give me a hand?

I had my fly unzipped on Wacky Wednesday at my children’s school. I must have had it open the whole time I was there, I went to the bathroom and thought, Maybe the reason no one says anything about it is they don’t want me to ask them to help me zip it up.

No Necktie

John John was going to wear a necktie but kiboshed it at the last minute. I can’t blame him, he wasn’t getting paid by employer or judged by a higher power

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