The Chronicles of Nani - Support

Things didn't go as planned and this week's vlog ended up being done on a day that started with tears and almost no will to record. Instead it was plans changed and this is why the day started with tears. I think it turned out pretty good.

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.

Weekend Playlist, November 4

I stopped the shuffle this week in a spot that made me kind of sad, it also made me understand some of my feelings this week and why they've been weighing so heavy on me. I'm not used to dealing with truly major problems alone. The first time I tried to do that I ended up seeing a psychologist for a few months. (Maybe a couple of sessions this week would've helped.)

Here are the last five songs from my library on shuffle:

Don’t Stop, Jon Batiste

Deep Cuts The Knife, Helix

Don’t Lie To Me, Barbara Streisand

One more day, Diamond Rio

Silent Lucidity, Queensryche

John and me at a New Year's party, I think I was about 19

Silent Lucidity was John’s favorite song by his favorite group. You see lots of kids in the video but the lyrics speak of giving strong quiet support and protection. John was like a big brother to me since we met when I was 15 years old. He was one of my closest friends and that unconditional support was always there. He considered me to be a strong person and a generous person, someone who always made sure no one was left behind. But the truth is, anything that is considered good about me couldn’t possibly compare to the man that John was.

I guess that song struck me right now because I really wish John was here. In October 2009, I lost the last person who could let me be worried, who could let me be weak and not feel like I was less of a person for being so human. I have a surgical procedure scheduled for tomorrow. This week has just been hell for me. My brain is tortured by nightmares because I’ve never had anesthesia for anything before, not good for the psyche of a control freak. And also for the last week I’ve not been allowed to use any of the vitamins or supplements that I take and I’m starting to feel the effect of some of those not being in my daily routine. There are vitamins and supplements that I take in lieu of advancing to drugs for some things and I’ve been cut off of some of the drugs that I take that keep some of the MS pain at bay. I’m pretty much miserable and scared. Mostly what I’ve heard from others have been things like, “don’t worry about it everything‘s gonna be fine,“ “suck it up buttercup, it’s just part of life,“ “just shut up already, it’s no big deal.“ people mean well when they tell me not to worry but I need someone to just listen, tell me they understand that I am afraid and comfort me, talk to me, make me laugh to divert the fear. John did that for me on more than one occasion.

Our last picture together at my wedding reception, July 2009

I need somebody to comfort me and quell the demons in my own brain but there’s no one left to do that for me. I miss my friend.