#maintenance

What do people Mean“working out gives you more energy”???

I did a little bit of warm ups yesterday, and sure it got it moving for the rest of the day

But today I needed 3 more hours of sleep AND I’m sore

Dose #5: Haunting Surprises

November 1, 2018

Not all treasure is silver and gold.

Why hello there my loyal readers! I know, I know, it’s been over a month since I last published anything to this blog even though I said I’d be writing more. I’m still trying to figure out how to do this whole blog thing… However, I do have quite a bit of news to share, so once I remember how I usually do these kind of entries, I’ll get right to it.

First Maintenance Dose of Spinraza

Today is a week and three days after I was administered my very first maintenance dose of Spinraza, my fifth injection. Sorry for such a long wait, just like last time. For some reason, whether or not it’s due to pain, I take an entire week to recuperate from my injections. Even right now as I’m writing this, my brain is screaming at me to stop writing and do something mindless.

Sorry brain, you don’t run this show.

Well, maybe you do, but you’re not making me stop writing.

I think I’ve lost my mind.

The procedure itself went extraordinarily well. Compared to my fourth injection, there was a noticeable difference in how my team was acting. My radiologist seems to be a bit more comfortable with me, I’ve never seen his face but hearing his voice behind me warning me he’s going to do something as I freak out if he just does it has become sort of comforting. Although, it sort of causes more anxiety since I now associate his voice with pain as he’s the one who starts off the whole thing with cleaning my skin for preparation of the lidocaine shot to make my skin numb for the injection…

Of course, I was flipping out the entire time during this dose. Flashbacks of the last one invaded my thoughts all weekend as well as that morning. Luckily, the whole thing was extremely efficient this time. No needle issues, no angle issues, no issues at all honestly. They were in and out pretty quickly. Although I do admit the pain of having Spinraza forced into my spinal fluid was a lot more noticeable than the last few times. But I will take the pain of the lidocaine injection and the full feeling of Spinraza being administered over the pain I’ve had to endure before. Sure, I was freaking out the entire time and ended up making a Supernatural joke that no one other than my dad understood,

but I’d rather be freaking out and believing it’ll be absolutely terrible and being proven wrong instead of having the mentality that everything will be fine and I’m proven wrong.

That probably sounds like the worst mentality to have, but hey, when you’ve gone through as much as I have, you tend to have a “cynical” perspective toward certain situations.

I’m just really glad that it all went really well, and I think my team had the same thought.

However, the reason why this injection went so amazingly is the best part of this whole ordeal. Apparently my radiologist documented the exact angle where my Doc had to place the needle on my body to get directly into where he needed to be. All of us asked at once what angle it was and we laughed. He told us and I joked about getting it tattooed on the injection site, either the exact number or just a drawing of the angle. Again, everyone laughed and dad teased me about suddenly becoming brave enough to get a tattoo. I love them, I’d love to get one, but I despise needles…and pain..

Only one of you knows how long it took me to make this.

Ten points to the house who understands the purpose behind my photo. No, I didn’t make the web.

What topped the entire appointment was that my team, whom we really should have a name for, all wrote in a birthday card and gifted it as well as an adorable teddy bear to me. I’ve named him, with the help of my grandmother, Razi for Spinraza ¯\_(ツ)_/¯ even though his given name is Brandon. Since that name doesn’t really have any meaning to me, his name is Razi, and you can see him holding the box of Spinraza for me in my lap in the photo above.

I didn’t have any sense of a headache and not really any pain. I was able to eat with relative ease and ended up playing Soul Calibur for a good part of the day until both myself and my dad realized that I should probably not over do it and I was put into bed.

Post Spinraza Injection #5

I’ve been out of it all week. Honestly I don’t really remember much of what I’ve done other than a few consistencies. The red tide here in Florida is absolutely terrible as well, especially this week unfortunately. So that’s also a variable that was thrown in at the end and has been upsetting my lungs and stomach. I don’t have much of an appetite the week after my injection as is, but this time I’ve had quite a bit of nausea…

However, I have noticed a bit of strength improvement already. The day after my injection, I was getting dressed and as my arm was being pulled through my shirt, both myself and my dad realized that I had helped in putting my left arm up through the armhole of my shirt. It took us both by surprise and he slightly loosened his grip on my arm to see if I could hold it. I did. For about a second. Maybe. Either way it was totally unexpected and new. Obviously, as it was unexpected. Man, I’m tired.

Pre/Post Spinraza Injection #5

So, I have a few videos for you all as Tumblr has finally gotten it’s act together and allows me to post videos within my post.

Visual #1

Dates each video was taken:

1. September 4, 2018
2. September 11, 2018
3. October 9, 2018
4. October 16, 2018

Okay, I lied, Tumblr hasn’t gotten with the program just yet. Only one video is allowed… A GIF set will have to suffice for the next visual.

Visual #2

October 24, 2018

Yes, I fed myself, wooooo!

Visual #3

October 20, 2018

It’s getting easier and easier to sit up like that. Also, as a side note, my physical therapist is only holding my head up. There is no physical way that she could hold my head and my body upright without decapitating me. So that torso control is all me.

Aaaaaaaand there’s my ten image limit… I really should find another way to blog…

This entry is slightly cramping on my creative juices due to the restrictions anyway and this needs to be published, so I am coming to an abrupt halt here and will begin on writing another blog entry that will hopefully allow my words to flow out a bit easier… Besides, I did want to fill all of you in on Halloween and all that good stuff. As well as an idea I’ve had buzzing around my head over the past week or so. I’ll cover that in my next update and see if you guys like the idea.

Until next time, my loyal followers!!

The Archive will be down for maintenance from 11:00 to 14:00 UTC on Wednesday, November 24. (Find out what time that is for you.) Please follow @AO3_Status on Twitter for updates.

i don’t post on here much because motivation but i love seeing your tags and finding my gifs on stimboards <3