Chronicles of Nani - This Week In My History

This vlog is about things I've been doing to catch up in my world. It includes how one gets a weight when they're in a wheelchair and can't stand on a scale, Covid booster shots, my emotional support cat celebrating his birthday and my sheer joy in seeing and listening to the nearby carnival.

Chronicles of Nani - More Vaccine

We start off with a little bit baseball! Actually, a whole bunch of baseball. Then I wheel onto my accessible soapbox to talk about Covid, changes in vaccination for immunocompromised and questions that can't be answered about the selfish people who are afraid to be vaccinated and are possibly helping the pandemic get worse.

 

The Chronicles of Nani - Donuts, Aide Agencies & Politics

Whew! I almost didn't get the vlog done this week! It's been a very, very busy week. Some of it is explained in the vlog, but the aide that I had left the agency abruptly. They didn't have anybody to replace her so they waived the usual two week notice to leave since there was nobody that wasn't getting paid if I left because they had nobody to assign to me. 

So with David planning on his vacation during the first week of June, I had to find a new agency very fast! I basically said “sign me up” to the first agency that called back. It's been an exhausting week with new people in every day at the beginning of the week and having to go through the whole speech of “this is here, that is there, this is how you put me in a sling, this is how you wash my back…” over and over and over three days straight. One of the symptoms of multiple sclerosis, no matter which kind you have is fatigue. The first three days of this week with four hour shifts with new aides every day has been exhausting. Add to that it's Cottonwood season! Cottonwood is the nastiest of my spring allergies. So I have exhausting new aides, medicine I take for my allergies in pain meds, which I have had to take because being that tired makes pretty much all of my symptoms a little worse. Thursday morning arrived and I haven't recorded anything for the vlog. I hadn't even really had time to write my bullet points that are my cheat sheet for when I'm doing the video recording. I didn't even know what I'd be talking about until this morning. So please watch the video and let me know what you think of my improv!

Donuts, Aide Agencies & Politics

(The Good, The Bad & The Ugly)

The Chronicles of Nani - Pandemic Vaccination

David and I got our first Pfizer vaccine shots on St. Patrick's Day! (The older of the two teddy bears in our front window is now wearing a green Band-Aid to let everyone know he got his first shot too.) I made it a whole year o never getting outside of the house except for some fresh air without going insane. But even if it was just to get a shot, it was great to be in a large group of people again.

 

The Chronicles of Nani - 2021

It's officially 2021 on video as of 8am this morning. I just need to figure out how to be cute again LOL. (I am working on that too!)

Chronicles of Nani - Quarantine Field Trip

This week's video is my first time using my cupholder phone holder for video. I also had an aide following me for close-ups and different angles. It's perfect and I've learned a lot. But learning is important! My mother always told me that you should learn something new every day because the day that you don't learn something new is the day that you start dying. I'm nowhere near ready for that yet so I relish screwing a few things up so I can learn. I still think it turned out pretty good for a first try!

Remember that if you haven't gone to YouTube to watch one of the videos yet, please do and hit the subscribe button. Then you can just watch them on the blog, but the more subscribers I have the more possibility there is that I can make money on the vlog. I'm not so much worried about the money as I am if my vlog has enough subscribers I'll eventually get to meet Stephen Colbert!  :D

The Chronicles of Nani-Sports in 2020

An Exciting Week Ahead

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.