Showing posts with label life vlog. Show all posts
Showing posts with label life vlog. Show all posts

Saturday, September 10, 2022

Vlog The Morning After Sleeping In My Wheelchair- Embarrassing Topics


Don't you just love this monarch butterfly on my thumbnail? This deserves it's own little blurb. A couple weeks ago I noticed them on her butterfly enjoying our zinnias. Then there was the time I almost got hit in the head by the hummingbird poking around our zinnias. Love it. This day I was observing the butterfly from our window, believing there was no way I would be able to take a picture of it. I decided to ask God to keep the butterfly there long enough so I can get outside with my camera and get a shot. Well the most amazing thing happened. I cannot lift my arms at all from where I sit in my wheelchair or at any time for that matter. So I took my little Canon PowerShot camera pointed up to where the majestic butterfly was sitting on the tallest zinnia flower. Not an easy shot because like I said, I cannot lift my arms and to mention I also can't see through the screen to even see what I'm shooting at. So I trust in God, guessed that I had it in frame and click. And the butterfly went and that was that. When I checked the viewfinder, I was thrilled to see it was the perfect shot. Nothing was blurry and even the composition seemed perfect. I am quite sure that God help me with that because, that butterfly on top of the Zinnia was far too high for where my camera could point to to get a decent side view of the butterfly. So all glory goes to God and I'm thinking him for a once in a lifetime shot that I get to enjoy and hopefully paint eventually.

Watch Below!



Last night we camped indoors, which for those of you who don't know me and Anita, that's me slept in my wheelchair. The problem with that is I don't usually get a lot of sleep. By the time I settle down, and close my eyes it's usually about three hours. I've realized that I think it's because I'm so used to having to go to bed when someone here has been pre-scheduled to come and help me into and out of bed, then having the freedom to move around at any time whenever I like. It's just too wonderful for me. So these are the only nights I get to live unfettered, and yes that's where the hyperactive part of my ADHD diagnosis seems to come in to play. I had to laugh when I thought, maybe that's why God allowed me to be in a wheelchair, because he knew I'd be all over the place if I was on my feet. I hope I remember to ask him that one day, these days I've been choosing basically, to sleep in my wheelchair about once a week. But the driving force behind it is having limited personal care attendants, and wanting to make sure that works out the best way possible. Plus I really like the idea that I get to choose as well.


Seating clinic for new wheelchairs

I believe that was mentioned in this video a little bit. If not they're somewhere else. But I am thrilled that I am entitled to a new wheelchair a year sooner than I originally thought. Our government provides 75% funding basically, every five years for things like power wheelchairs and manual wheelchairs. The funny thing is they don't cover very expensive wheelchair batteries. But we deal with it. Craig has a decent healthcare plan from his days as a letter carrier. What will be great about this is it has a power tilt along with a power recline and power foot rest that raise up and down. I will be sharing all I can and the blogs and that in case anyone else is interested and want it all is. Because I didn't know about it until after it was too late when I got my last year. Or I would have applied for that kind. It means that I would be able to sleep far more comfortably in my wheelchair. Even though I already sleep pretty decently. It will just be good because my hips and legs will be able to stretch out and the circulation can flow better. I have chronic lymphoedema which means my legs and feet and ankles have been swelled for a lot of years. Including the left side of my face and left arm. .. That's why I wear my wedding ring on my right hand.


I know I shared the last process about five years ago with you everyone here at walking railroaded. This time it won't just be my process by Craig's at the same time because he's going through a different vendor but is still seeking a new power assist wheelchair. Pretty exciting now we just gotta find the client portion of the funding which can get pretty expensive, but it's worth it. He actually has his power assist wheels that he bought without any government funding only about two years ago so he will just be getting a regular manual wheelchair and then they add rackets so he can use his emotion M25 wheels. That he loves so much. Makes life a lot easier when your shoulders are battling things like rotator cuff damage and osteoarthritis.

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:


Tuesday, January 29, 2019

Fun And Educational Life Vlog Video Channel Share: Squirmy And Grubbs

Meet Shane and Hannah! I have a special place in my heart of course for my fellow peers who were born with SMA (Spinal Muscular Atrophy, just like me!). Shane has a great sense of humour (a little dry for some, if you aren't use to it) and attitude about life,  living with SMA Type  2.

Shane, like myself, faced a shorter than most others, lifespan. That was until recently. Shane and many others have been blessed with a very new synthetic DNA treatment called Spinraza. Shane has to have an injection into his neck, directly to the spinal cord every four months! It is the first ever actual treatment for this life threatening disease. Type 1 is the number one genetic killer of infants, such as my beloved nephew at eleven days. It was created to replace the affected or missing genes to halt the atrophying effects of SMA. It is not a cure. However, because it now can be started as soon as a little one is born, they are living without the symptoms, as if the SMA was not there!

It is wonderful for those with type one and two. Shane has been using a wheelchair since he was two. He is now about twenty-sixish. The Spinraza has a mega high cost and must be taken for the rest of their life to maintain the effects. It costs hundreds of thousands for each treatment. It is covered by many people's health insurance in the USA. As for where I live in Canada...last I heard was the phone call survey I received from the Muscular Dystrophy Association, when I first learned about this amazing breakthrough. Canada was trying to decide if it would be approved for treatment here or not. Not sure what happened. Mostly because I am not interested in receiving it anyway. I personally  has blessed with a long life, I am about to be 53! And I can't travel to receive the injections. I leave when I move on, up to God.

Shane has noticed that he is actually gaining some abilities he lost a decade ago. He also has to accept that his life expectancy is now the same as the average healthy adult! It may sound odd, but I understand how challenging it can be to accept when you have been prepared your whole life to leave earth early. I was misdiagnosed at about seven,  when the "Specialist" told my Mom in front of me that I would be dead at twenty. (Duchenne's Muscular Dystrophy). Then re-diagnosed at thirteen with Spinal Muscular Atrophy. However, I didn't learn my life could be "normal" until I passed twenty one or two. I have doubled that age and still battle with preparing for physical death. It is a blessing but it would seem that once you are programmed to believe death will strike prematurely, it's challenging to accept and embrace life here, without pre-planning my life ending event. I am happy for Shane and think he will be just fine adjusting to the very amazing fact that he will no longer have to face a death sentence. And he has a very beautiful, funny, good natured girlfriend and caregiver,Hannah, to enjoy his new adventure called life! He was doing a great job before meeting Hannah too. She's a bonus enhancing his life!

I have been blessed and encouraged watching these two do life together. They laugh a lot and that is why so many fans watch, I am sure! So I hope you enjoy this couple's sense of humour as well as learn a lot about living with SMA and what interabled relationships can be like. You'll see why I said that when you watch their vlogs and tv interviews...Watch the video below to see. Thanks you two for helping to open the eyes of those who need to learn we are equal to everyone else. And thanks for encouraging you fellow peers to live life to the fullest, that love is for everyone. We just happen to do life in a unique way! And thanks for keeping it real!
Travel Adventures!


Intimacy And Disability

Spinraza - Shane's Still Alive

Shane Lifts Cup For First Time In A Decade!

The Today Show- Behind The Scenes

Shane When He Was Younger