Chronicles of Nani - Things Change

The world itself is in a constant state of change. So I don't know why I ever thought things would be different for me!

I took a few weeks off to catch up on some important things at home thinking to myself but three weeks later I have a good amount of things done and underway. Now don't get me wrong, there are a lot of things that are underway. They just aren't done. I'm really not that uncommon in wanting, or at least hoping for, instant gratification.

I guess the hardest part is expecting things to be done in a certain order and "things changing" makes up my mind in what order I'm going to get things changed.

One of the big changes I had to live with this week is my editing time got cut really short. But I'm here! But if some of the things look choppy, please forgive me. If it's really that hard to look at just listen because the vocal sounds pretty good. LOL

*What construction sounds you hear from time to time during today's program are not house reclaiming it’s the cats trying to organize for me. They're not very good at it.

Chronicles of Nani - Priority List 2

The more things change the more they stay the same. This is actually a replay of “Rant" from last year. I am feeling frustrated over many of the same things only some of them worse. I'm also dealing with it better. Maybe that's a warning!

I've got some things to tend to but I'll be back in 3 weeks.

#MultipleSclerosis
#wheelchair
#NeedHelp

Chronicles of Nani - Almost Didn't Make It

Another week of things going wrong punching me in the face. BUT another week when my face survived!

It was also another week where I recorded edited and did the whole shebang on Wednesday all day and most of the night. I'm uploading and going to sleep.

Hopefully things are getting back to normal and I'll be tackling "list 2” to get my life back!

#CyberCoffeeShop
#HerbalTea
#MikePiazza
#MötleyCrüe

Chronicles of Nani - Music, The Great Divide

Today starts with a story about war relics and goes on to talk about America's Civil War and the Constitution. The song speaks of the fear that a Civil War could happen again.

Luke Combs is not afraid to talk about it and neither am I. I hope you're not either!

#NaniMusic2

National Civil War Naval Museum portcolumbus.org

Luke Combs, Billy Strings - The Great Divide (Lyric Video) https://https://youtu.be/2LFP2KLabp4

Luke Combs talks about The Great Divide https://youtu.be/05hLmEvHMkw

#CivilWar  #TheGreatDivide #NaniMusic2

Chronicles of Nani - Replay: Know Your Limits

Sometimes things can get overwhelming. I've jokingly said before that I'm the most overworked disabled person I know. Some are by choice. I don't HAVE to do Chronicles of Nani and yet in so many ways and for so many reasons I do have to do it.

But there are other things too. My husband works all day and there are a lot of things he doesn't have time to do. It's a choice between having dinner or getting me clean. I have to be honest sometimes that's a rough choice. But my being clean, while it's healthier in the long run, doesn't put dinner in his belly.

So I have a list of major priorities that I have to take care of. I'm not physically able to clean the house but I have to get the house tidied and in order or I can't get a home health aide that will stay and work with me to keep me clean and healthy. I also need to make sure that things are put away in an order that I know where everything is so that when someone asks me or some thing is I can tell them exactly where to look. I have drawers labeled for everything and I'm going through now figuring out if I need to get some more drawers. I am also desperately trying to figure out a way to get my haircut and the color adjusted before looking at myself drives me crazy. (That part is personal but it's very important for my mental health.)

So there's an abundance of things I need to do, but there are things that I need, especially for my health, and want really badly. And I'm the only one who is going to be able to get them done. So this wiek I am taking a break to try to get things caught up than I need to and I'm showing a rerun from a year ago that I should've watched a couple weeks ago.

Chronicles of Nani - Celebrations! (But I'm Hiding)

Now you see me, now you don't? Oh you'll see me in this vlog, just not a ton at first. My husband washed my hair when he was really not in the mood to be washing my hair. That only do I look like my hair was washed by someone who didn't want to wash it, but I look downright scary!

It's not fair! This blood premieres on my birthday and just one day after the two year anniversary of Chronicles of Nani on YouTube. I should get to look like happy party girl that is scary Halloween girl.

But there is some fun video of me in my house and some fantastic pictures of deer & fawns take a note just by me and my husband but with the permission of neighbors in the nextdoor group. Thank you so much to everybody that added their photos of sweet spotted little babies!

Chronicles of Nani - Bits & Bytes

If there are disabled people who have nothing to do except sit around the house watch TV and if they're lucky someone will leave them bonbons to eat, I must be doing something wrong.

Okay, I was forced into early retirement because of MS and as a recovering workaholic, I'm not even sure I would have actually retired. I just spent a week with my dad, also someone who sucks at being retired. He limps badly, it hurts me to watch, but it's moving that keeps him feeling okay. Aside from being wonderful company and conversation for me he was also an incredible cook every day he was here, cleared the weeds out of my wheelchair ramp area, washed a huge backlog of dirty dishes, scrubbed the stove surface and repaired the broken trimwork that keeps the bathroom door closed. He also made a few trips to different hardware stores to get all of the pieces necessary to fix our broken mailbox. THAT'S how I wanted to retire someday. And probably still do a YouTube show about some thing because I really couldn't stop working.

But well my husband seem to have had a miserable week because he couldn't spend it all completely away as originally planned, I actually had a nice week of vacation. But then also left me with a HUGE list of things that I need to do including record and get the show ready to premier.

This week’s show is all about what you put together when you have about 10 minutes to figure out what you're going to do in two days to record and put together the entire thing. I think I'm still pretty good at what I did before I was forced to retire early.

(Of course thanks to MS, it took lots of caffeine to get it done and about a three hour nap when it was finished.)

Chronicles of Nani - Home Health Care

Whether it's a chronic illness or a wheelchair or both, we all have a need for assistance. Sometimes it takes a while before we admit that. It's human nature to try to be determined enough to do it on your own as long as you possibly can. But when you do need that help you need either someone that lives with you and is there 24/7 or you need a home health aide that can come in and help you with the things you can no longer do alone.

There are a lot of us that need more than someone to just keep us company, microwave a meal or play a game of checkers. I can't move without a patient lift and I'm not capable of cleaning myself without assistance. Those types of home health aides are not so easy to find. Back to, as I've said before, “home health aides are the most overworked and underpaid members of the medical pyramid." Truly skilled people are so underpaid that they either move on or continue with school to become qualified for a better paying job in the field.

In the area where I am it is especially difficult to find not just qualified for my needs, but Home Health Care at all

This weeks vlog has happy moment and sad moments. And keep your eye on the left side of the screen if you just want to see lots of cat and kitten play video bombs!

Be sure to stick around for my happy ending slate!

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Chronicles of Nani - Life Got Really Normal

Life with a chronic illness and in a wheelchair we all create and live with our own kind of normal. I had a few wonderful days of exactly that, including enough energy to accomplish "too much to do." With MS they don't last forever, but when they do it's heaven! Everyone enjoyed having me around, ESPECIALLY me!

Please come and enjoy with me a great weekend including a new kitten!

(Thank you David, Mike, Claudia, Sheri, my Dad & Aunt and Casey, the sweetest little kitten around, for making my world fantastic this weekend!)

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 - Leave Of Absence

Sometimes things that you don't have but are necessary can pile up on your shoulders so bad that it drives you into depression. I'm not talking about feeling down, I'm talking about real life depression. Been there, been diagnosed with that, recovered and never want to do it again. But here I am. 

 

I need a home health aide, someone who can help keep me cleaned but also help with getting the things I use organized and get me ready to do my Vlog every week. Aides are in very short supply and very difficult to find unless you have tons of money right now. Agencies, who don't pay aides well at all, are charging even more because they can't find employees. Some independent contractor aides are asking for an hourly rate that is less than the agencies asked for and more of what they're worth and in the price range I can afford but some are asking as much or more than the agencies asked for and none of them want to pay taxes on the income. But I have to have an aide for me to be able to do pretty much anything. 

I need to take a leave of absence maybe as little as three weeks could be as much as a couple months, but I do want to come back.

Chronicles of Nani - Photography Video (my week off)

TV shows get to take a week or weeks off and show you whatever reruns they want you to see. They have a whole staff and crew working on their shows and my YouTube show is just me with a little bit of help now in then. So I'm taking a week off and YOU get to pick what rerun to watch or just enjoy a couple minutes of my photography and I'll see you next week!

Chronicles of Nani - Story Time: Norfolk & Western 611

It's not just a story I'm out though streamliner festival at Spencer North Carolina in 2014, what it is, is the connection of that festival to a fantastic family day riding behind the Norfolk & Western 611 steam engine in 1992. I have fantastic memories of both - one was a trip where I climbed up into the cab of the locomotive and one was being able to travel on the museums train trip in my wheelchair.

Two very special memories forever connected by one very special locomotive.

Chronicles of Nani - Overnighters 2

 I'm so sorry that this is a late for the Premier on YouTube if you enjoy watching the premiere. But the great thing about the Internet is once it's there it stays! The cyber coffee shop is open 24/7/365 (366 every four years.)

The past couple weeks have been rough MS weeks so my hands have been working worse than usual and I'm having problems finding a home health aide, which is someone I desperately need a few days a week. If you have a moment to send a prayer or good thoughts that this problem gets solved as soon as possible, I'd really appreciate that! (It's looking like it may be ruining my birthday next week, which makes me very sad.)

This weeks vlog, Overnighters 2 continues where Overnighters 1 left off. Seriously, it's where The Editor decided to cut Overnighters and make it a two-part vlog. 

In Overnighters 2, I talk about some of the places that I've been with my wheelchair & the update to the ADA in 2010, including information I collected and changes a favorite local business made without me naming any names to Washington. The 2010 update also helps with how to get places for your overnight trip and some of my thoughts about where to stay on your overnighter.

Chronicles of Nani - Repeat “Heat”

 Sometimes you lose control and lose track of things that are going on. This is actually not a sad vlog, it's just a repeat vlog. Instead of finishing up “Overnighters 2,” I ended up with the offer of going on a couple of them & running out of time for editing. So this is a replay f “Heat" and ways to beat the heat outside. That's something that I’m really going to need since I'm going to be out for a few days in the summer!

“Overnighters 2,” will premiere NEXT week while I enjoy a couple of those overnighters myself.

The Chronicles of Nani - Overnighters 1

 'm in a wheelchair and I can't stand up at all I need assistance to move around my own home and I can't even dress myself without a lot of help and then be put in the wheelchair to leave the house. That doesn't mean I'm "homebound.”

Even in the wheelchair as long as you have someone who can help you a little bit and travel with you for an overnighter you can get away from the house and enjoy lots of things the dark too far away from where you are but far enough that they are traveling!

This two-part vlog let you know about things that you can do near you and things that you can do for free because you're in a wheelchair. It's not necessarily always a bad thing do you have that piece of electric or self propelling metal underneath you.

Disability Resource Center

www.disabilityresource.org

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 - Baseball Road Trip

 Now that I've had my Covid vaccine and I got my OK from the doctor to leave the house May 5, 2021 my husband and I went to Fort Wayne Indiana to see the Michigan Whitcaps at Fort Wayne Tin Caps. After the awful year 2020 was, and remember I also boycotted baseball because I was angry with how they did the 2020 season, but I can't stay mad at baseball. I'm a lifer when it comes to being a baseball fan. So my first day out for other than a Covid shot in over a year being a road trip to go to a baseball game was the most awesome date day with my husband that I could think of. It was a great day!

Oh and I am choosing a microphone so that when I am out loud events you can hear me more than the background. I think I did okay but next time when I'm out it's gonna be even better.

The Chronicles of Nani - Happy Thanksgiving

 I'm starting to get my act together! At least I'm on time with the video this week! 

From the earliest back that I can remember to the present day Thanksgiving is my favorite holiday. Remember, I said from the earliest Thanksgiving I can remember. Of course before that Santa and I had a pretty close penpal friendship.

HAPPY THANKSGIVING to my Internet family whether you are a new regular at my cyber coffee shop or you've been here since practically the beginning (I love you Edna!)

Chronicles of Nani - Pain & Pressure

 This weeks vlog hurts to listen to, but that's reality sometimes. 😩