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I had microvascular decompression surgery to alleviate trigeminal neuralgia, and now I’m in recovery again.
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Read TranscriptMy brain chemistry, the amygdala, stress, fight-or-flight part of my brain is throttling my hippocampus, which is the intelligent part of my brain. The fear and anxiety part of my brain is getting the upper hand because of all of these traumas that are happening right now. I’m recording this episode to try and get it out there to say it all and to hopefully move beyond some of this fear, trauma, and anxiety.
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Read moreI have a lot more energy and I am much more present. I’m able to think complicated thoughts.
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Read moreSo they were like, “Something is weird. We got to put the EKG on him.” But I’m like a hairy individual, you know? So they got out the trimmers, they’re like, “What?” They’re just like, “What do we do?” … she says to me, she’s like, “Don’t worry. After we’re done, I’ll shave the rest.” I’m like, “Hell no you won’t shave the rest of my chest. Are you kidding?” I think of my chest hair a little bit like Samson, you know what I mean? Stay away from that. Come on, give me a break.
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Trigeminal neuralgia hurts like hell. I’m going to have micro vascular decompression surgery, get out of pain, get off these pain medications, and contribute to my family again.
Read moreI signed up to have surgery. They’re going to pop a hole in my skull and operate on my trigeminal nerve. It’s called micro vascular decompression surgery.
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Man!– I have trigeminal neuralgia, my face hurts. Ow! The kids had to go away, it hurt so bad I couldn’t handle it and I freaked out. I’ve been staring at plants in the garden. I grilled chicken for the whole family, had dinner and couldn’t eat it, because my face hurt. Tomorrow is Koko’s third birthday.
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General confusion and the inability to think of anything much at all last week.
I felt like giving up on Hoppin Hot Sauce. It was too hard and nobody wanted it anyway, I thought. I went on for some days like this and I think it may have happened the week before as well. I really felt like quitting and giving up everything. And what was so annoying was I couldn’t even have a thought about that, to evaluate it. There were no brain waves.
I started to question my medication., because I was feeling so bad. Then on Thursday at the end of the day suddenly I snapped into action and begin to realize just how much I had to do. I had to pay some people and sell sauce and balance my books. I got a haircut and I’ll probably cook dinner for the family. I think it’s going to be vegetable pasta with tomatoes and grilled zucchini and roasted red bell peppers because we have all that around. And lots of Parmesan cheese.
On the advice of my therapist, I started taking antacids with my afternoon pills, not an empty stomach, and I saw an improvement. I no longer question reality all afternoon.
What does my day look like? What does my dad look like? What does my d*** look like? Why doesn’t artificial intelligence know what I need to see first thing in the morning?
In short, antacids are getting it done, and artificial intelligence still leaves much to be desired.
Download the Whats The Matter With Me? podcast on Apple podcasts and whatsthematterwithme.org
Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. Contact me here.
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Shoutouts to Nat – happy birthday! Shoutouts to Patrick, thanks for the vacation tips, shoutouts to shannon – thanks for reaching out.
I interviewed free jazz legend peter brotzmann on the radio, I resigned from my radio show, I had a challenging vacation, im working on Hoppin hot sauce as usual
Trigeminal neuralgia support group is pretty intense. People have a really hard time with the pain and it comes very hard and pretty much destroyed their life. Their status updates when they put how hard it is into a one-sentence post it is very Stark to read it.. like a haiku from hell
I applied for a grant related to this podcast, to help me increase my internet savvy and learn Techniques to spread this message in a louder voice with greater reach. I don’t know about all that but I can tell you it was great to put together an application. I wrote some essays that really clarified why I am doing This. I’m going to share one here but before I do I want to ask that you please don’t judge me I just tried to write an essay and I’m not great or anything I’m much better at talking like I’m doing right now but anyway here it is:
Q: Why are you interested in disability advocacy? What are 1-2 issues that are important to you and why?
Too often disabled voices go unheard. We are discussed but we aren’t part of the conversation. I have always believed that direct action is the fastest way to instigate change. Our voice is marginalized, and using our voice will make it stronger.
As we tell our stories in our own voices, we create our own representation. We’re represented as living a life not worth living, wirh meager intellectual abilities, unfeeling and incapable of love; as purposeless mistakes. This distorted simplification is very unfair to say the least. To avoid it, we must take back the way we are represented. We are our own best advocates.
In 2017, I created the What’s The Matter With Me? podcast to share my experience as a 39 years old husband and father of two, small business owner with multiple sclerosis (MS). I recorded 33 episodes in Season 1, and I’m currently 9 episodes into season 2. I went online to find podcasts about MS from the patient perspective, and they were few and far between. In response, I started What’s The Matter With Me? to tell my story, so that a story like mine would be told. As I’ve produced the episodes, more and more people with disabilities have reach out to me saying how much it has meant to them. I have created a kind of feedback loop: I support others and in turn they support me. I am in greater touch with my disabled community, especially younger people dealing with disability earlier in life when expectations for robust health can be higher. We need to raise our voices in order to be heard.
Even though I resigned from my weekly radio program I am still active at kfjc,. Lst weekend I took my family to a fundraiser event at streetlight records here in San Jose and it was good to see people. And then a couple of days ago I went to the weekly meeting where I reviewed some music and recorded some scripts for production spots that we will make for the fundraiser which is coming up in October.just silly stuff asking for money but I’d like to be part of the community at kfjc which is a bunch of burnout to like music just like I do.
One of the listeners from my radio show has since joined the station. she has some disability and says that I inspired her to join. One day she called during my show and told me that she knew someone else who worked at the station and she listened to my show and she heard from her friend that I was disabled. I encouraged her to join the station because it was rewarding and it was something that a disabled person could definitely do and it was a great group, a great and supportive community So I’m very glad that she joined Kfjc and it was great to see her at the meeting.
that’s another episode in the books thank you for listening.
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Japanese proverb tattoos, swimming while disabled. Posted it on reddit and some folks reminded me how scary swimming can be.
I watered more this summer, a couple times a week. I haven’t been falling which is good. Because the last time I fell I fell through the fence and it looked kind of rickety for a time. It’s fixed now.
I interviewed Peter Brotzmann on kfjc. He is a wild free jazz saxophone player who is famous for his rough sounds. He recorded seminal free jazz album Machine Gun. I got him to admit that he plays sweet and tender now that he is older. And talk about butoh
Resigned from questionable Traditions. It was a weekly program on KFJC where I played music from around the world, and questioned it’s validity or value, or something like that. I must admit to feeling some purposeless. However …
Selling hot sauce. I’m starting to write regular emails, reach out to customers and grow my business. I did a hot sauce tasting at a local grocery store where they sell my sauce. It was great to get out there, press the flesh and push the product again, like I did at the Fancy Food Show last season in episode 30. it is exciting but also scary.
I tell myself I know what I’m doing, that I have worked at e-commerce companies before. I’m just generally copying what these bigger companies did and applying it in my little business. I try to get out there and to talk with customers, find new ways to sell products every day. I can do it!
We went to Monterey on vacation. It was frustrating because I felt very limited by disability.
We went to the aquarium which is very beautiful and wondrous. I have a lot of childhood memories there, but in the here and now it was hard to move around in the dark with the jellyfish and crowded area very difficult to walk. I hope my kids had a good time, I did not. It wasn’t something I could just go and do — it was very challenging to navigate the experience, the crowds, and my disability at the same time.
When I used to go on vacation I would try and cram everything into my itinerary. Now I need a nap. I need to eat food regularly. I can only travel so far.
I love to see things and experience new things, like anyone. It was frustrating for me to be stuck up on the cliff looking down at my childre playing on the beach and not be able to join them because I couldn’t traverse the rocky staircase. It upset me.
The bathroom where I was staying was big and beautiful, open with a jacuzzi and all covered in stone and it seemed like a total death trap every time I wanted to shower or brush my teeth.
I’ve been going through lots of trigeminal neuralgia. I’m switching from one medication to another. It has benefits, like feeling more awake and present, but the changes in medication exacerbate my symptoms. More about TN in S2, E6: Awaker.
Check out the Whats The Matter With Me? podcast page on Facebook, please review it and like it — help me get the word out. You can email me using the contact page.
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