Welcome to my coffee shop in the cyber neighborhood!
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Friday, August 7, 2020
Thursday, August 6, 2020
Credits: Sports Galore by Magical Scraps Galore
Nanimoji created with Bitmoji app on iPad
If you're reading this, I hope you got a chance to see the debut of The Chronicles of Nani vlog. I'm posting a blog episodes here as well because the YouTube channel and The Chronicles of Nani blog are partners. I'm still learning a lot about the YouTube channel and I'm sure I'll get better as it grows. I don't know for sure that you have to have a YouTube account or a Gmail account to subscribe to a YouTube vlog. But even if you watch the videos here on the blog, I'd really appreciate it if you stop over at the YouTube channel which you can get to from the videos on the blog and hit subscribe. You only have to do that once for me to get the YouTube credit and then you can continue just watching the videos here.
My second vlog, about sports restarting in 2020, will debut tomorrow, Friday, at 8 AM. My future vlogs will all debut on Friday at 8 AM. The only reason the first one debuted on a Tuesday is because I wanted my YouTube channel to launch before I turned 54. I turned 54 last Wednesday. One thing I've definitely discovered with the first two vlogs is that it's a lot easier for me to do the video and a little bit of editing, which I love video editing, than to type or speech to text and go back to fix the text.
I record video on Saturdays, because that's the day that David has to go in the office to work instead of working from home. (That's the reason why I can't do anything that requires a lot of typing during the week. I need to be quiet when he's working at home. So speech to text is not possible at that time.) Put in earbuds or put on noise canceling headphones and I can edit the video pieces until my hands fall off. Plus I've been told that I have a good voice and a nice smile. Also, if it's video, you’ll KNOW that I'm telling the truth about how I feel or am feeling. I've never been able to get away with lying if you're looking at me.
I have discovered that if it rains or there are gray skies on Saturday, I have two problems. First my main source of light comes from the big picture window in front of me, so if it's gray outside the lights not so great inside. Also, it may be more importantly, when it's gray outside and the barometric pressure is low it tends to make my MS symptoms worse, that usually means my legs hurt more, my arms are more numb and worst of all my speech seems to be a little worse because there seems to be a delay in the connection of my brain and mouth. But I still make it work.
My video stuff is the biggest thing in my world right now. I'll try to make my next BLOG entry about something else! In the meantime this week, I hope you come back tomorrow and see the next vlog!
Tuesday, July 28, 2020
Saturday, July 25, 2020
If you're one of the regulars at my “coffee shop in cyberspace” I have no doubt noticed some changes. The Chronicles of Nani is going video!
First off, I've mentioned it before, thanks to MS and what it's done to my body, not my brain, but definitely my body, I not only don't walk, but I don't write and I really can't even type. Last year in September my dad and I went to Cleveland Clinic to talk to a physical therapist about whether or not I had the ability to work at all and if I was qualified for any sort of disability income. After much testing and talking to the therapist he determined that I am really not able to do any kind of work for an income. What's even worse is I haven't been able to work in enough years that I am not qualified for any kind of disability. (I am going to talk to a disability attorney to see if there's any way that I can qualify. I waited until I had spent all of my investments and even cashed in my annuity for retirement and spent it all before I became desperate for something, anything.)
Matt, the therapist I saw, walked out to the door with my dad and me. He shook both of our hands and when he shook mine he said, in a truly less than happy tone, that he was sorry there was nothing he could do for me. My dad was quiet as we got back into the van and he climbed my wheelchair down to the floor before he got into the driver seat. He was truly surprised at the big smile on my face. While Matt was finalizing the paperwork I was becoming inspired.
One of the many MS symptoms is insomnia. That's an interesting twist because severe fatigue and oversleeping is also an MS symptom. I'm a natural nocturne, since high school, so I'm up late anyway and on insomnia nights I'm sometimes still awake when the alarm for my 7 AM pills goes off. After I scrapbooked a lot during the day and even wrote in my personal journal and the journaling for the scrapbook pages (Keep in mind that when I say "write" I mean speech to text but then I have to go in and fix all the mistakes that the text part picked up wrong from my speech.) My hands and forearms are usually painfully numb. I am the watching a lot of late night TV. There's some decent comedy and a lot of interviews that are pretty interesting. One of the things I've noted in the shows that I've been watching is it there are a lot of people making decent money doing video blogs or as they're better known vlogs.
What inspired me was that, while I'm no longer able to pack up paperwork, snacks, etc., to continue as a self-help group leader for the MS Society, I still talk to a lot of people about MS. There are many different kinds of MS and even more symptoms of MS. I freely answer what it's like living with it. I am an optimist and I try to make the best of every new challenge the progressive disease gives me. But I still have plenty of bad days and I have to deal with those too. People make an actual living doing videos talking about hair and just their lives going to restaurants and out clubbing at night. I actually have important things I can talk about that can help people and there are plenty of medical suppliers and even drug companies that, if I have enough viewers, might be interested in advertising on my blog or YouTube page.
It's a small amount that you have to earn per year to count as income to be considered for disability. Once I have small earnings for a couple of years then suddenly everything that I had paid in since I was 16 becomes valid for my possibly being able to get a monthly disability check. It may not be a lot but it would help. I have insurance and a husband who handles the out-of-pocket expenses, but last year it still cost $800 for an MRI alone and that wasn't the only thing insurance covered but still had a big portion out of pocket left over. (And an MRI is an annual necessity with MS.)
I missed my first planned launch date because I wasn't quite ready on January 1. It wasn't long after that that through reading and a family member in Europe who had COVID-19, the coronavirus and the birth of a pandemic made me start to rethink my idea for a Vlog. People are getting sick and dying all over the world, is talking about how I'm dealing with MS a little less important? My doctor has had me in quarantine at home since the end of February. I've only been out of the house a few times and when I do go outside I'm not supposed to leave my driveway. And she still has me staying at home now.
The coronavirus and things we do and don't and didn't know, and things we were and weren't told in a timely manner that could've given us more of a chance to keep it from spreading so much in our country has just been insane. The discovery that wearing masks can protect other people so if everyone wears a mask and practices social distancing we protect each other is helpful but there are actually people who believe that wearing mask is against their first amendment rights and even some that don't believe there is a coronavirus/COVID-19. (It's a PANDEMIC, people have gotten the disease and died all over the world and all over our country. I kind of think it's real.) You don't even have to get off the couch and the Internet is huge. Read some reputable medical sources and not just memes on Facebook.
The one thing good about quarantine is that it's letting people realize prejudiced injustice is still real and we have murderers who are supposed to protect us. There is peaceful and safe with the virus that still surrounds us, protesting. One of the bad things is that there are those things to realize and it took a world pandemic for us to pay attention to them.
But stress and depression and even a major creative block from all the terrible things going on in the world that I'm not necessarily in, but still a part of, made me realize that I'm able to talk about my living with MS, but also living with MS and still being part of the world. I'm actually feeling even more inspired than I was almost a year ago. Now my new goal for getting my Vlog on the Internet is "before I turn 54.” I made that declaration at the beginning of last week but as I'm looking at it right now it means the first video will be up on YouTube by Tuesday because I'm only gonna be 53 until 7:45 AM on Wednesday.
Wish me luck. I hope everyone who watches my videos will find some reason to smile and some tidbit to make them a little more understanding of people like me and people like everybody else.
Who are you?
Who is your neighbor?
Who is your coworker?
Who is that stranger?
How do we define ourselves?
How do we define friends and family?
How do we define everyone?
How do we define anyone?
Look at the back of your hands
Are they light, bronzed, olive, dark?
Is that you, your color, your race?
What makes that shade you?
Now flip your hands over.
That color is incredibly close to the same color
as the inside of every other hand
What do you do with that part of your hand?
You put together
The insides of your hands
To pray or meditate,
When you think or plan
You hold the inside of your child’s hand
With the inside of your hand
You shake the inside of someone’s hand
With the inside of yours
A musician uses the inside of their hand
To strike keys on a piano,
touch the frets on a guitar, bass, violin, banjo
To hold a drumstick or a microphone
The earliest painting we do is with the inside of the hand
Talented older painters hold the brush inside their hands
Ceramics and pottery is shaped with the inside of hands
Crafters at home hold their supplies inside their hands
An athlete throws a ball, catches a ball, dribbles a ball
Holds a bat, a racket, a golf club, a hockey stick
Proudly clutches a trophy or medal
with the inside of their hands
A cook, chef, baker, uses the inside of their hands
To hold the spoon that stirs food in a restaurant
To knead dough, and put cookies or a pizza in the oven
At work, or anyone at home
An architect draws with the inside of their hands
A builder plans and schedules with the inside of their hands
A carpenter, electrician, construction worker
uses the inside of their hands to build
One last push and a doctor brings a baby into the world
A mother holds the newborn against her for the first time
A father caresses them both
All with the inside of their hands
On the inside our blood is the same color
But on the outside what parts of our bodies define us?
Parts where we look more different
Or the parts where we are more the same?