Becky’s ALS Journey

12/20/2021

When I was young, I read a story called The Bird’s Christmas Carol. I fell in love with it. So very much. To me, it represents the true spirit of Christmas. And life. And love. I read it every year and when I became a mother, I would read it to Tiffany and Zakk until I had to turn over holidays to my parents so I could work every possible holiday to financially support my family. I really regret having to do that. But I digress!
I’m sharing the story with you. It’s old but touches the old heart.
(Just click next chapter to get through it) and let me know what you think. I love and appreciate every single one of you 💕

https://americanliterature.com/author/kate-douglas-wiggin/book/the-birds-christmas-carol/summary

The Birds' Christmas Carol by Kate Douglas Wiggin, a free text and ebook for easy online reading, study, and reference. The Birds' Christmas Carol was published in 1888 by the children's book author from Maine, best known for

12/19/2021

Today was amazing!! I was treated like a queen and now no longer look homeless!
I even saw Santa!!
Thank you all for loving me and making me feel so special! I wish everyone could see things through my eyes. What a beautiful world we live in.
Always tell your family and friends how much you love them today! And every day!

12/18/2021

Well today is gonna be just wonderful!!
First of all, you’re gonna need some background info before watching the video 😂
My favorite song is Can’t feel my face by the weekend 😎
My favorite DJ always plays it for me in our virtual world secondlife ❤️… he got all gussied up for the holidays and made me a video. Enjoy!!

https://gyazo.com/1771dd49b9eea5593d1e95d33b8aec94

12/16/2021

This man right here means the world to me. He’s my partner in crime and the only person in the universe that knows me better than I know myself. This is the infamous Marcus . I’m forever thankful to the universe for making sure we found each other in this life!! I love him so much that I promised to haunt him when I’m no longer here…now THAT is indeed love right there 💕
Thank you for being you Marcus 💕

12/14/2021

I’m so sorry for not updating lately. I’m having such a hard time holding the phone to text and scroll. Not easier on laptop. My Tobii just sits there mocking me knowing that until eye gaze gets activated if it ever does, it’s useless lol
Just send some good vibes my way. I’m running out of time and energy

12/10/2021

12/10/2021

12/10/2021

Good morning!! A few updates here
Hospice won’t take me as long as I use Trilogy (which is screwed up but I understand the rationale) and I’m positive that without it my breathing will cease. I know it’s selfish on my part but I’m not ready to throw in the towel yet. I love life and want to soak in as much as possible and get all the lovin from family and friends 💕💕
Now, the fun part!!
TSO was awesome!! I was literally exhausted last night and came home and crashed!! Prepare to be overloaded with pics and videos! Starting now!

12/09/2021

Today is great! Marcus is here with me from California and tonight we’re gonna see TSO in Greensboro 💕

https://youtu.be/MHioIlbnS_A

Official music video remastered in HD for Trans-Siberian Orchestra - "Christmas Eve / Sarajevo" from 'Christmas Eve and Other Stories' (1996)Subscribe to the...

12/09/2021

Ok I’m thinking maybe I should do a cooking show?
People always say they wish they could see the world through my eyes and I sure wish that was possible! The powers that be would get the lead out and find a cure or even make a treatment for ALS available!
But I can tell you and show you what it’s like to live with ALS. Everything is so difficult. I have very little strength and nothing works like it should. This evening I made an easy supper and I videoed me opening the package 😂😂
No wonder I stay tired all the time 😂
Just opening the box zapped all my energy 🤓
On a side note, you can see how my hands betray me. My fingers are trying to contract so I wear little splints on them but not while cooking 😂

12/08/2021

Today I feel so much better!! I know I made you guys sad yesterday but please don’t be!! I’m in a good place mentally and am still fighting and making the best of a really crappy situation 🤓
But I gotta tell you- it’s little things that make me happy! Today it’s this- since I’ve had my feeding tube I’ve only been allotted to have 6 syringes a month. That’s like 1 has to last 5 days. My medical friends know they should be changed every 24 hours. Well finally FINALLY I got approved for one a day 😂
I am giggling and super relieved !
I hope everyone is having an awesome day!

12/08/2021

Update time
I saw the doctor today and am going downhill fast. My legs are getting weaker and I can no longer drive. I need help getting dressed now. Thank goodness I’m not too modest! Imagine being completely alert and oriented and having to have someone stuff your saggy b***s into a bra-it ain’t pretty! 😜
But I digress…
The dr is referring me to hospice now but don’t cry!! It’s a good thing 💕
ALS is fatal and the type I have(bulbar onset) is extremely aggressive, unlike the type most people are familiar with (limb onset). I’m not happy about it by any means but I accept my fate and intend to spend the time I have left surrounded by people and things that make me happy and bring me joy. I want to laugh and let myself be free to accept help…which is the hardest thing for me!! I’m extremely independent and hate to feel like I’m not in control. I’m in great hands and I know that.
Please keep me in your prayers, I love you all so much 💕