#the butterfly effect
Anniversaries, Psychology, Music, and Improvements
July 16, 2018
Hello there my lovely readers! Today is quite a special day, any guesses as to why? Well, today is the three month anniversary of getting my very first injection. The day my life completely and utterly changed for the better. I’ve had quite a few of these revolutionary dates, but I feel this is the most important… At least, at this moment in time it is.
With this anniversary comes some more information that I have gathered from new experiences. This post is going to get a bit personal, so if you don’t want to read this I totally understand. So, I have titles in this not-so-little update to help those of you who want to skip the chick flick moments.
The Psychology Behind Spinraza
Over the past few weeks,I have noticed a considerable decline in my mental stability. I am not exactly the most stable person on the earth when it comes to keeping a check on my emotional responses, but I was just absolutely out of control. I didn’t like it. Who would? I thought I was loosing my mind, and I was. Kind of. I cried more than I have in a few years, over stupid stuff, out of frustration mostly though as I have no other outlet to release such irritation. Plus I have been getting severe anxiety that just seems to consume me. My mind is the only thing I can rely on, and that was conking out on me.
I normally have a strategy to get me out of this state of mind, which sounds kind of stupid but it would work. However, I was so far gone that even this strategy didn’t calm me down and I didn’t know why. That is, until a few days ago when my brain began to cool down.
I was in the car with my grandmother and we were discussing how I have been acting lately. I knew, I know, it was unacceptable, but I just didn’t know what was going on and why. My analytical skills were absolutely gone. My grandmother, however, reiterated the same thing she had been telling me since I first started this whole episode.
All of these little feelings that I have been experiencing are all occurring as a result of Spinraza. Now, why would this be? Well I’ll tell you why.
Since October 10, 2017, I have been on a roller coaster that never stopped. That was the day that started all of this, when I happened to notice a red Mustang for sale. It was red and black, and not one of the newer pieces of garbage. It was beautiful, and it was my dream car. I made this observation out loud to my grandmother, to which she replied that I should start making goals. If I wanted to drive this dream car of mine, I had to picture it. But there was this small problem that prevented me from believing that simply picturing something would grant my wish, and this small problem was the fact that I am severely physically disabled. These were all the thoughts that went through my head before I actually had some sense of hope.
So after quite a bit of banter, she convinced me to let her email the hospital that I had previously signed up with. I believe I have mentioned this before but it’s just a bit of a recap.
This situation, of course, caused me to have an overwhelming feeling squeeze my chest. It took everything in me to not have the salty tears brimming behind my eyes to fall. But I was unable to resist. I have had this possibility held in front of me too many times. I couldn’t bare the thought of more disappointment. But my grandmother couldn’t let this go. She convinced me to let her write an email to the Hospital.
So she did.
We got a phone call the next day. It was my doctors’ assistant. We couldn’t believe it. But you know what they say, if it seems too good to be true, it usually is. That was definitely the case in this scenario. She informed us that the insurance companies had just approved the medication, Spinraza, this summer. Really, just a few months ago. She even said how they administer it right there at the hospital! They have a few patients that they were treating already. The news were just getting better and better. But then, there was the hard blow.
We cannot treat you.
That was the first time my roller coaster went all the way to the top, then plummeted. This was also not the last.
My point is that I have had so many ups and downs since that day, to the time of the approval from the doctor that I do have a space in my spine to have the injection, to insurance company approving Spinraza, then the phone call asking if it was okay to ship the medication to my facility, then lastly my injection day was booked and I was in the operation room getting the procedure done. All in the matter of a week. We all haven’t stopped for months and now that I have had all of my loading doses, it has all caught up to me.
As I’m writing this, I do realize how weak and sappy all this may sound, but I’m not writing this all down for entertainment. This is probably something that should be kept in a diary, not something that is being posted out there for everyone to see. But there are people out there that are undergoing the Spinraza treatment just like I am and who knows, they may be feeling just like I am, and I hope that one day this blog may help some people.
Pierce the Nights with Lyric Kites
This next part of the update is a bit more cheerful than the last, as is the next part. I decided to create a… Mixtape, if you will. Music is kind of my go to whenever I need to calm down and/or think. So I figured, why not make a playlist that depicts what I’m feeling? Each song has a meaning behind it, so if you listen to, or read, the lyrics of each song you should be able to understand why they’re there. Oh, and just in case the link doesn’t work, I put each song down below in order if you want to listen to the playlist but can’t.
High Hopes - Panic! At The Disco
Control - Halsey
The Middle - Jimmy Eats World
On Top Of The World - Imagine Dragons
Unsteady - X Ambassadors
Sweet Blasphemy - Black Veil Brides
Best Day Of My Life - American Authors
Happy Song - Bring Me The Horizon
Believer - American Authors
Walk On Water - Thirty Seconds To Mars
Your Can’t Rely - Counterfeit
I Won’t Back Down - Tom Petty
Boulevard Of Broken Dreams - Green Day
Fight Song - Rachel Platten
I’m Not Okay (I Promise) - My Chemical Romance
I’ll Be Ok - Nothing More
Stay Alive (feat. Matt Skiba) Andy Black
You Don’t Know How It Feels - Tom Petty
Sing - My Chemical Romance
Mr. Doctor Man - Palaye Royale
Believer - Imagine Dragons
Mad Hatter - Melanie Martinez
You’re Gonna Go Far Kid - The Offspring
Ready Or Not - Bridget Mendler
Party In The U.S.A. - Miley Cyrus
Give It All - Rise Against
Breathe - Sam Wickens
Home - Phillip Phillips
Swing Life Away - Rise Against
The Light Behind Your Eyes - My Chemical Romance
Run Boy Run - Woodkid
The Climb - Miley Cyrus
More Improvements
Lastly, I went swimming yesterday and I was able to put my hand up on the side of the pool and lifted my right hand up for a little wave.
Not only was I able to do this, but I also fed myself a few pieces of strawberries last night. I even helped my left hand with my right hand, meaning I actually had enough strength in my weak hand to help my dominant hand! I’d say that’s a pretty great improvement. Oh, and I also fed myself this morning as well. An entire piece of bread. Not just the one or two pieces that I would normally barely have enough stamina to eat. The entire plate. I was even able to do two assignments afterward.
I’ll tell you one thing, even though this has all psychologically screwed me in loads of different ways, Spinraza pumping through my veins is definitely worth every pain and anxious thought I have experienced.
A Cutting Edge Update
June 29, 2018
Today day started off with a trip to Cracker Barrel as I finished my Economics course yesterday. I figured I’d treat myself to a caramel coffee as my cousin had something similar when we went there with her a few weeks ago. I’m glad I did as I discovered as we were waiting for our food that I finished my class with an A, and that my C on my end of year exam didn’t bring my grade down as much as I expected. It’s been an absolutely amazing day with my aunt and grandmother, we had a Girls Day Out with breakfast to start, then Michaels Craft Store next. We bought quite a bit and ended up with some beads to make my aunt a Spinraza bracelet like my grandmother, father, cousin, and I have. This was the end result.
It was thanks to doing is bracelet that I ended up handling scissors.
This is not something I have been able to do. Ever. The amount of Occupational Therapists that tried to give me scissors that were “adapted” to “help me” cut independently… I won’t get into that. But today, I saw the scissors, picked them up with one hand, put my fingers in accordingly, and started cutting the air. So my grandmother gave me some paper and said have at it. So I did. I even cut a circle out of the paper, which I stupidly didn’t record, but I folded the paper in half, and cut half a circle to make a whole circle. I cut a double thickness piece of paper. Cutting just a regular thickness is usually difficult enough, but no I had to make myself justsee if I could do it. The rest is history!!
