#He prefers hanging with the staff rather than the coasters

[retr0scum]

Yann Itor (just call him Yann)

The park's janitor, they could only afford one (jokin jokin..)

He's secretly an "amalgamation" of some previous rides that closed in the past and can use their powers anytime. But chooses not to cause he has better things to do (like fighting carps in River Rapids)

Originally a scrapped concept of a Corkscrew but they kept him as a janitor. He likes turning back into Corkscrew on his free time..

[rebelwheels-blog]

Dose #6: Added to the Mix

May 26, 2019

It is at the times of when we feel we no longer can that we always manage to prove ourselves wrong.

This was supposed to be posted a month and a half ago oops

Greetings readers, yet again, long time no write. These past few months have not been pleasant and writing this blog now is not something I have been particularly looking forward to writing… Although I will admit that seems to be my mentality for every one of these posts lately, which I apologize for. However, writing about my life isn’t all that easy. Some may argue that I could or should leave bits and pieces out, which I have seen others do. But I always feel like the rest of the story just doesn’t make as much sense when it’s done that way. Luckily, a friend of mine convinced me that it needed to be written, and they’ve fallen asleep on our phone call right now, so I ended up gathering the courage. Of course, as I say this, I am having second thoughts, but nevertheless, I will continue.

Picking Up Where We Left Off

My last big blog entry was definitely a heavy one. With me getting sick, discovering my love for poetry, and then being plonked this news that a fellow SMAer had passed and basically left me money from the contest we competed against each other in. Granted, it was his parent’s idea, however it did not feel that way when I was gifted his money. I mentioned how he left a rather large imprint upon my soul and that because of him I wanted to embrace the fact that I am apart of the SMA Community as well as the Disabled Community in general.

When I wrote this, I had no idea what Life had in store for me.

The month of February was the month of my sixth Spinraza Injection, February 25, to be exact. I was ecstatic to be receiving my sixth injection as this is the one that many have said on the social forums to be the one that really counts. The one where you notice bigger milestones to be achieved. The one that matters. So as the weeks go by, I get my blood drawn where and when I usually do, as well as other things, and wait. Then the Thursday before my injection, I get a phone call from the place where I get my injection. I thought it a bit strange to be called on the Thursday instead of the Friday to confirm my appointment for Monday, but I picked up anyway.

The phone call wasn’t to confirm Monday’s appointment.

The lady that schedules all of my doctor’s appointments had called me to say that my injection date had been moved to three weeks later. I couldn’t believe my ears. Apparently since my insurance had gone through a merge with another company, the paperwork to get my injection and medication paid for had been completely changed. Even though I had received a letter a few weeks prior saying everything that was pre-approved would not have any issues and coverage would overlap until the end of July.

Apparently not.

My immediate reaction was to bite my tongue and agree to changing the dates in my calendar. But emotions overruled my logic and tears began to stream down my face making it difficult to see.

Great, this is bringing back all those emotions.

I quickly changed the dates in my phone and thanked the lady on the other end of the phone before hanging up and sobbing as my grandmother held me after running to get a box of tissues.

The next few weeks were hell. I did not handle it well at all. I’m still having the effects from it to be frank. Even though the effects that I was experiencing are not possible to even occur. I was assured and reassured this. At least two more times after that phone call of having to move my injection date, as I was told two more times on the Friday that I still couldn’t have my injection. Every week was purgatory, every second was worse than the last. Then, to top it off, every day I felt my strength dwindling every second that ticked by. Which is the effects that I had been assured and reassured is not possible. Well I am here to assure everyone that their assurance is not true at all. Sure, molecularly, it’s still in my system until the sixth month mark. But the effects of the Spinraza giving me back my strength go straight down the drain after the four-month mark.

I may not be an expert at chemistry, but I do know that what I was experiencing was not psychosomatic. Getting tired easier, leaning over more, experiencing difficulty picking up my head again… The list goes on. Of course, due to this occurrence, I have found myself researching how genes work and how Spinraza does what it does down to the molecular level. In turn, causing this update to be a month late. Okay, it wasn’t just my curiosity that caused this update to be much later than I prefer, as I’m not only just regaining the use of my body the way I had before this hiccup, but the fog that has clouded my thoughts over the past months is starting to lift as well.

Gotta love my brain.

Now, there is a flicker of light in all this darkness, and that leads me to my next heading.

All Over the Place

During my roller coaster of emotions, I ended up acquiring a group of friends. Yeah, I have actually acquired a group of friends.

I’m growing up!

This group has helped me all through the month of ups and downs, so allow me to introduce them to you.

Our little family is quite the complicated bunch, so here is how we all refer to each other.

Dova is the founder of our family. She found us scattered all over the world, and brought us together to create our group. I owe her a lot for taking me in. Especially since she understands my crazy as she is as crazy-probably more-as I am. All joking aside, she is the first person to invite me into a group and I haven’t felt unwelcome.

Schiki is Døva’s longest friend in the group, and they refer to each other as Twin due to how close they are. I used to not talk to him much, that was, until we decided to phone each other. I haven’t been on a call as long as I have been with him since… Well that was in the past. Talking to him is as easy as it gets, never losing things to talk about. Granted, this applies to the rest of the family as well, but with this one, it’s different.

SD is the youngest of the group, I recruited her. She’s like the little sister I never wanted. (Sarcasm) SD is one of the funniest people I’ve had the pleasure of meeting, even if her humor sometimes ends up getting misinterpreted. But she has a beautiful soul and a voice to match it. She’s gonna hate me when she reads this hehe

Spike… Now that’s a character. He has many fascists which makes him interesting to get to know. He’s an amazing artist, easy to talk to, as is Schiki, and pretty smart. Him and Schiki are two I’ve had group calls with and we ended up talking about physics. This guy knows how to push my buttons, but who doesn’t, really?

Hybrid is an entity all of his own. He’s part of the family, but in a sort of complicated way. However, he’s a physics major which makes it easy for us to talk. Can’t really say much about him as he’s been away for a bit.

Death is a new-ish addition to the group, but he’s pretty interesting. Gets along easily with Spike and has a great sense of humor. I can thank him for introducing me to a video game that I can actually play.

The best way I can describe this group of ours as a whole is in the layout of a poem that I had written for one of our members during a moment of doubt.

We’re the puzzle pieces that get lost

And are found one day

By someone who took the time

To look

And to pick us up

And put us in our own puzzle

That creates a bigger picture

That’s just as odd as we are.

Every one of these people has helped me out one way or another. Sure, we get on each other’s nerves a lot as well, but that’s what happens in a family. I don’t know how I could have made it through my unknowns without them. They found me at my lowest and helped me get back to where I should be, and for that, I am eternally grateful.

The Sixth Battle

The day finally came where I could actually be given my injection. April 1st. Yeah, we had the same thought. Who would book an appointment as important as this when so many things have gone wrong already? Well, luckily the appointment actually was kept after being moved three times already. Three times the charm, I guess.

Even though this injection was an absolute pain to get, it was my sixth one which was supposed to be when I saw more extreme changes in my strength. So I decided to make my Spinraza crew a gift.

Those who were there to see the gift were blown away, but most of the crew for this injection was new. The usual staff was out for this, that, or the other, but my main nurse was there which was all that mattered at that point.

Of course, the complications with this injection weren’t going to stop simply because of the fact I was actually on the table about to have a long needle shoved into my back. Noooooo. The one time I decide not to put my earbuds in to listen to music is the one time the needle decides that it doesn’t want to find my spinal fluid sack in my spine. It took a good ten, twenty minutes to finally feel the spinal fluid drip out from the needle. Never had I welcomed that feeling so much in my life.

As each second ticked by that my doctor couldn’t get the spinal fluid out, the more I worried that they’d have to take the needle out and either redo it or book the appointment for another day. But everyone assured me that I’d get it that day no matter what, and they were right.

My injection site was in a lot more pain than previous times, as well as my lower spine when I put my head back to eat. But I was grateful to have the synthetic DNA back in my system. Although, more than a month later, I still don’t feel like I have all of my strength back. Especially when it comes to my core strength. But I’m hoping as I don’t have to go through all of this approval garbage for another year, Spinraza should build itself back up in my chemistry.