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.

Hands

I wrote this back in June. I'd been having a massive creative block and couldn't figure out why. With everything that was going on in the world, I couldn't write or even scrap about it. I even tried doing a scrapbook page about having a creative block and all it did was make me realize my block was probably because I was just overwhelmed.

Back in 2001, I did a PowerPoint photo video after 911. I wasn't really involved in any sort of social media, in fact in 2001 AOL and email WAS social media. I emailed that video to everyone on my email list and encouraged them to share it if they felt moved to do so. I actually received a reply email from my friend who told me that he loved the video. He told me the creative people create in their own ways after major disasters to allow people who are not naturally creative to reconcile their feelings with works that express the words they need but can't find. That's not verbatim, but it's essentially what he told me.

It made me feel like I had an obligation to create, not just for my own outlet, but that it was necessary to share my work. But as the first half of this year was a couple months from ending, there had been so many awful things going on that I just short circuited.

I turned to my personal journal, my trusty journal that I've always been able to just write until my problems come out of me and are solved.

Honestly, I sat down to write about COVID-19 and it turned into stories from my past and of rant about the current protests. SO many things that are just wrong right now.

After the photo are the actual words to Hands. I was watching late night TV and a musical performance by a band with a very dark skinned singer and I noticed the inside of his hands as he held the microphone. I started thinking about all the people I know and realized how similar the color of the inside of all of our hands are. When I said to the TV, and it's a line that you'll read in Hands, that those similar hands that we all have are the same hands we put together to pray, I started weeping and I cried until the end of this song. I had to go back and download the song so I could hear it because at some point what I was seeing struck me so strongly that I was crying too hard to listen to the music. And that was the beginning of my creative block ending.

Hands

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?

First Post of 2020

Hello everyone and welcome to 2020!

Yes, I do realize that it's the11th of January already. I'm feeling kind of overwhelmed with the many priorities in my life right now. And they're all important priorities to me which is why I'm talking to a therapist who is helping me sort out my priorities. Remember I've blogged before about the importance of realizing when you need a little help. My niece is a therapist in Indiana and I couldn't be more proud. She's in a profession that is just as important as any of the other medical professions. I think there are a lot of medical problems that can at least be helped by talking to someone who knows what questions to ask to help us find the answers to mental blocks we maybe put it in front of ourselves.

DISCLAIMER: I am not by any means saying that you should not see a medical professional on a regular basis nor am I saying that a therapist can cure everything that's going on with you mentally, sometimes you do need medication.

But one thing that I will say is that it never hurts to talk to a professional even if it's just one session every now and then to keep your psyche straight. Most insurance will even cover those appointments that could very well cost them more down the road


OK, my plug for the psychology/psychiatry profession is done.

So what do you think of the 2020 photo that started the blog? I think the colors are great; soothing and exciting at the same time. That's my January desktop. It's one of the three backgrounds you can get from the web. I picked this one out on New Year's Eve.


What I'm gonna do today, at least in part, is talk about my goals and projects for the coming year. This is something I've done in the past on my blog in January, but also keep in mind that “talking to a therapist about setting my priorities up” but I talked about in the beginning of the page. This year I am accepting and working on “Projects and Goals” as an ongoing project itself.


I guess I'm going to start with my first goal - I haven't done "Goals and Projects” on my blog since 2017. I need to speak that affirmation for myself out loud and in print every year. It helps. I also haven't done a logo since 2016.

As a creative person that's part of the affirmation. I'll be working on the 2020 logo and before the weekend is over the goals and projects 2020 affirmation post will be a reality.

Stay tuned!

So much going on

credits: Wintergreen by Mags Graphics and Winter Magic 

by Aprilisa Designs, Challenge word art by 

Kristmess, snowman paintings Fair Use from the Internet

Too much going on too? I have two big problems that I'm working on. I am proud to say that I actually am working on both of them. More on that in a minute…

Don't you just love the scrapbook page that started off my blog? I say that with all kinds of pride and I'm not sorry for stroking my own ego. I made that (No I didn't draw the pictures, I can't draw, but I did put it out to gather into a scrapbook page) and I’m very happy with how it turned out. The line referring to children making snowmen as “outdoor Michelangelos making Davids” is one I came up with many years ago and my husband David said it was too much to use on Christmas card. So I knew that eventually I wanted to use it for a scrapbook page and put that single line on a word document and then switched it to a pages document when I changed back to Mac. That's how long I was holding onto that line until I had time to create a scrapbook page I thought was worthy of it. I am VERY proud of that page.


All of my gifts and gift wrap are here and ready for me to put together, or anyway, ask David and/or my aides to put together for me.

To add to my pre-holiday excitement, I just found out that my niece, Rina, will be at my dad’s on Christmas Day after all! Originally, a first year assistant manager, of course has the short straw when it came to getting a holiday off and although she isn't working on Christmas was originally scheduled for Christmas Eve and the day after Christmas leaving no way she was going to drive all the way up to Michigan for Christmas day to turn around four hours later and go back to Indianapolis. As it works out she was able to get the schedule manipulated so that she can be in Michigan for the Christmas Eve feast at my cousin’s and for Christmas morning at Pop’s. I'm sure she feels great about it for her, but I will admit wholeheartedly that I personally feel blessed. I'm not so mobile and therefore not able to see my nieces anymore than once or twice a year now. Good thing at over 50 I'm still well-versed in the way 20-somethings communicate.

All I really need now is to get my wool cape dry cleaned and either spend a night driving around looking at Christmas lights or finding a night that's not quite so cold to go to the zoo and see The Lights Before Christmas. If that can't happen I'll settle for making some space for my little 2 foot tree.

The Lights Before Christmas at the Toledo zoo, 2011

Now back to my two problems. First problem, as I'm going backwards in years, is my hands. First let me describe what MS hands are like. My description of what my untreated hands feel like is imagine that your hands are twice the size that they are, almost like there's a second skin that's blown up over top of your regular hands and inside that second skin it's packed full of tiny buzzing insects and day and night that's all you feel is swollen hands stiffened by the fact that they're packed with these buzzing insects. I've tried so many different kinds of prescribed drugs and dry skin lotions so that I could use my hands, grab more things without dropping them and even type. Frustratingly, nothing was working, one of the drugs even made me sleep so soundly that I’d wake up not knowing what time of day it was and sometimes not even knowing where I was. As a thinker and a control freak THAT was not acceptable!

But now, I've become part of the cannabis generation! I have not taken up smoking or seriously doing drugs. But I use CBD ointment, which is basically the healing part of marijuana without the THC that makes you high (and gives you the munchies which I really don't need right now.) I use a combination of serum and the lotion. And I've been experimenting now with a 3X lotion that I can really feel when I put it on and it starts clearing up my hands right away. The 3X unfortunately stands for triple strength and triple price. But if it works and I can actually feel things and use my fingers to type or at least fix errors that using speech to text makes, might make it worth swallowing the extra cost.

Then there's the other problem that I'm fixing. I'm actually talking with a therapist again to help me sort out the fact that I have a huge list of priorities that's so overwhelming I can't prioritize all the priorities. I've worked with a therapist and psychologist before and as I've said in the past they are the most wonderful people in the world. I think the number one thing is that you have to be open to allowing them to help you and you have to accept that helping you is not doing it for you but it's helping you find it in yourself to do it for yourself. I'm not gonna say that it's difficult or that it's easy, that it's quick or takes forever. That depends on what the problems are that you are brave enough to tackle and strong enough to realize that you can't do it alone. So far I'm already starting to feel somewhat at ease as the professional I'm talking with is already helping me break up my priority list so I can tackle things one thing at a time.

OK now is the time where I mention again that while Rina is the dedicated retail manager moving her way up, just like her great grandmother did, her twin sister, Tori, is a psychologist in Indianapolis. To say that I am incredibly proud of MY millennials is truly an understatement.

Christmas last year

So that's me checking in for now. With a little more control over my hands I should be able to blog a little more. But realistically, I don't think the next blog will be from me because after reading JDs fill ins Marco has been bugging me that it's his turn. But I think I've got some Christmas pictures and maybe even Christmas music to share this weekend.

Please keep me or add me to your reading list. The positive comments really do keep me going.

Now I need to take a break so I can do some reading and commenting myself!

Behind The Dot

Hi everyone in the Interwebs!

I’m Julie Danielle Catinez, but call me JD. I like JD better. Mommy says Julie Danielle is my name but she only uses it when I’m bad. Bad? Who’s the cat here? I’ll tell you if I’m ever bad. I’ll turn 4 next year and be able to go to feline obedience school. I read that in the online sample of our first semester text book, “Make Them Obey.” Even if you don’t go to obedience school, it’s a best-seller at Catmazon!

Mommy follows some pretty cool blogs! She hasn’t writed a lot in a while, but she’s using stuff she says is like catnip but you don’t feel funny. It sounds like boring catnip, but it helps her help me write, so if she likes it, it’s okay for me.

Mommy follows some great blogs Of course there’s Miss Edna’s biog where we keep up on our friend, Pogo, but there are also blogs about or writed by other cats! They play Interwebs games together. Mommy’s gonna help me with Linky so I can play too.

Friendly Fill-Ins is a Friday game, and I will try to do it earlier this week.

Friendly Fill-Ins are from Four Legged Fur Balls and 15 and Meowing.

1. I look forward to seeing _________ at the holidays.

2. I can see _________ outside my _________ window.

3. _________ always puts me in a festive mood.

4. My favorite holiday tradition is _________.


1. I look forward to seeing Santa Paws at the holidays! Last year I was a kiteen (Mommy and Daddy say we look like cats at a year old, but kittenhood lasts for a couple years.) Because I just becomed a housecat last year, I never got treats and toys for Christmas before. I can’t wait this year!

2. I can see squirrels outside my front cat TV screen. (Which they tell me is also called a window) It snowed last month and Squirrely, the star of The Squirrel Show, went into his oak tree in front of the screen. But it got warmer and there was another episode!

3. Mommy puts on my favorite green blanket so I can sleep on her legs always makes me happy and that’s a festive mood. She makes Christmas scrapbook pages and it makes her happy.

4. My favorite holiday tradition is Mommy has Christmas candy so we get more treats!

Have fun! I’ll be back soon!