Tuesday, June 30, 2020

A Covid World And Craig's Power Assist Wheels, Journey #2 Begins

Hi guys!  Recent times have left many many people, without the care that they usually receive. It's hard to believe that the entire world has been impacted by one microscopic virus! But it has! Many of us who live with physical challenges, dependant on the arms and legs of others, most definitely had to figure out (and still do), how to not sick but to also how to live life in our home knowing folks from the "outside" world would be coming in to give us a hand. It was tricky knowing the protective equipment like masks, gloves and sanitizers were unavailable. Thankfully, due my vulnerability and need to avoid chest infections, we already had basic protective equipment. A larger order of medical masks from Amazon took about 8 or 9 weeks! (Amazon sure has been making a killing during this pandemic!)

In our case, I had a challenging time trying to hire a new Personal Care Attendant over the past four months. Wow, four months! Hard to grasp our big blue marble basically hold for that long. As it slowly started to roll more, we were finally blessed with a wonderful new addition to my care team! Thank You God for her and for my solo Attendant who assisted me daily over these past months. More thankful than I can say!

As for my dear husband, Hard to believe it has been five years since Craig first received his power assist wheels. So I thought it would affect my husband being able to get a seating clinic appointment, in order to get set up for a new pair of Power assist wheels. Many of the clinics and companies that we would deal with as you may already assume, have been on reduced hours and such. Well, about two weeks ago after Craig inquiring about making a seating clinic appointment, they actually called to make an appointment! Craig was out doing his grocery shopping run at the time, so I got to take the message. The amazing thing was, or I like to say the miraculous thing was there was a cancellation and he was able to get an appointment within a week!
Even More Miraculous...
Even more miraculous, Craig came home from the grocery store that very same afternoon, showing me how his five year old power assist wheels were no longer. 
Check out the video below to learn more about it.

Sunday, June 7, 2020

Walking, Way Overrated: Vlog - The Morning After Sleeping In My Wheelchair. AKA Camping Out

Vlog - I was up at 430am, after a short campout night in our living room. Why are we "camping out" in our living room? See what I saw as I vlog The Morning After Sleeping In My Wheelchair. I am up and free to go outside at 430 in the morning. Well by the time the sun can be seen, it's closer to 530am, I think.

For anyone new, I have been sleeping in my power tilt wheelchair a night or two a week, initially because I have been in need of hiring a new personal care attendant. With only one PCA during this life altering Covid pandemic, hiring had been put on hold and now difficult because our Government is giving away emergency money to folks. Which is beneficial to those who lost work due to the pandemic. However, the PCA work with myself, is considered Essential work. Without my one PCA, I wouldn't be able to physically survive. PCA's assist with critical tasks of life like getting into and out of bed. That's just the beginning. I have been hiring and managing my own care for over twenty years... That's the long and the short of it.

So, in spite of having one Attendant until we can hire, still I wanted her to have a night/morning off. Once I discovered the back foam/shape of my power wheelchair was comfortable enough, I decided I could do it. Of course without God's Amazing Grace and my wonderful husband, I couldn't! 

Yes, stay bent too long in our wheelchair isn't good for the body. But one night a week, is worth the perks camping out in our living room. (my husband transfers to our futon to sleep.) The bonuses, I get to stay up as late as I want and as you'll see below, have even more adventures...

Watch The morning after my most recent Campout Below:


Saturday, June 6, 2020

Vlog: Under Quarantine . Campout Series - Sleeping In My Wheelchair, = Watching The Sun Rise

Hello World! Hope everyone is staying safe and taking protection seriously no matter how melancholy self quarantining can be. (For me, this is life as usual because I am an artist who loves working at home- but I have emphathized with the world, when we don't have a choice anymore. That's when I feel the
sadness and temptation to slip into self pity and the fear of getting the virus
)  
Something that is new to us also, spurred on because of  this worldwide covid shift, yet,would have happened any way, to serve another purpose. When needed and even by choice, I can actually enjoy sleeping in my power tilt wheelchair. 

We have vlog/videos that we will be sharing over time. Today, I wanted to share the cool opportnity to go outside at 430am to start watching the sunrise. Due to being in bed, requiring a Personal Care Attendant, and needing to schedule key parts of my life, I do't get to do these kinds of things on a whim. Something that is just part of my life. But being pressed into trying our campout idea, I have discovered great freedom. Even if just once a week, it's so awesome to have that freedom. Yes bed is more comfy, but the trade off is worth it! We even got to go for a star gazing (too much light pollution) walk at 1am! I love it!
 
To see part one of my early morning sunrise watching adventure there's the v. But first....

Social Distancing Isn't New To Mary and Peter.....
It has definitely been a challenging time over these past months. Unprecedented times. We can all relate to each other to a big degree. The entire world faces self isolation to help stop the spread of Covid-19. . Some countries won't let you leave your home at all. Then there is our realm, we are not to have gatherings of more than five, six feet a part. Ever watch the movie "Five Feet Apart"? Interesting all this happens world wide and this pretty good movie, about how persons living with Cystic Fibrosis can't be physically closer than five feet away from each other. Social distancing for patients with CF, is something they were very familiar with. I don't pretend to know everything but I do know, thanks to a favourite YT Channel called "Frey Life." I highly recommend meeting this amazing couple, Peter and Mary Frey. They share their very real life. As a young married couple living in America. Mary bravely lives life to the fullest with cystic fibrosis and her beloved husband Peter serves God as a Pastor, supportive husband. These guys know how to enjoy life no matter what obstacles arise. Take a look at Mary's art work, they also have a website. When you have cystic fibrosis, you are more susceptible to catching illnesses/infections from fellow cf patients. My disability is also something you are born with, as is cystic fibrosis. But, I can catch illnesses from anyone equally. 

Why CF patients are unable to be physically close to each other is  beyond my understanding 
If you want to be encouraged and learn about real marriage and life with CF, 
Frey Life - Watch:


Campout Sunrise Vlog Video part 1: with 
Campout Sunrise Vlog Video part 2: Anita 



Wednesday, June 3, 2020

Two For One: A Laugh A Day Plus A Bluetooth MPOW Ear Bud Review

Take five minutes if you want a chuckle or two and if you want to know our thoughts on the MPOW S11 click to link, Bluetooth ear buds.
My husband is new to ear bud world and come to think of it, I don't remember in eighteenths years of marriage, us ever really using good ear phones. Take a watch!
Watch Below