rebelwheels-blog

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No. 39

Skin on fire from thoughts burning. Flames lash out, trying to spread the pain from inside. To be a writer is to be constantly learning how to politely shout for our thoughts to be read, in hopes that in another they reside. Oh, how I tire of the incessant yearning to rid myself of doubt, and to be poised, instead, free of fright. RebelWheels

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The Weight We’re Expected to Carry

5.31.25 Greetings, creatures of the interweb. I have a topic to present that I have been putting off for a while, and honestly as I’m writing this, I find it difficult to know where to start. Needing help to do what I need to do is a basic fact of my life, one that not many would give much thought over. There isn’t much reason to. When I speak, people do sometimes forget I am disabled. Which can…

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Spinraza Dose 23 & 7 Years Progress

Spinraza Dose 23 Complete 4.17.25 Greetings, creatures of the interweb. These past few months have been extremely hectic, and this dose was a roller coaster to get. So now that everything has settled for a moment, I want to write. Also, given what day yesterday was, I kicked myself for letting the opportunity pass without a posting a blog entry. Yesterday marked the 7th year I have been…

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Spinraza XXIII

Pounding like a war drum, the blood courses through my anticipatory veins. The weight of the expectation after gravity has regained some of its grip over the past weeks. The wait to feel and be strong again is an agonizing time dilation in a pool of molasses. That is, until I am lying on the steel table thousands have been and will lay on, then the volcano explodes. Every…

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Two Years in the Sky

Two years gone by, as I struggle to write how much I miss you. I miss your sage advice. I miss you stealing my fries. I miss our drives, I miss passing the ocean and you’d remind me, “don’t forget to say ‘hi!’” I still look to the sky when a plane flies by, and when a rocket catches my eye, I think of you. No one as wise, or as intuitive, as you. I miss you… D. S.

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Happy New Year

1.1.25 Greetings, creatures of the interweb. As we collectively say our goodbyes to 2024, most of us are reflecting on the past year and planning for the year ahead. As I join in this tradition, I warn you this post will discuss some touchy topics and controversial thoughts. This past year, one of the most transformative experiences was receiving an official diagnosis of Autism and ADHD…

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Spinraza Injection 22

12.7.24 Greetings, creatures of the interweb. This injection was a tricky entry but thankfully no awful side effects this time. The Doc had a hard time getting the needle to cooperate and go in the right direction, so he did tickle a few nerves trying to get to my spine. It felt like the medication went straight to my right leg, which might freak out most people out, but admittedly it’s…

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Suspicion Confirmed to be Reality

Greetings, creatures of the interweb! I come bearing news about myself that I wasn’t fully sure of until it was official, however, it’s admittedly been a few months since I was told that I have ADHD & Autism. I haven’t quite known the ‘appropriate’ way to share this information to those of you reading this who know me personally, so my note and confession to you is here. Now you’re probably…

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T-minus 7 Days

Greetings, creatures of the interweb. Surprise! I have a date for my 22nd Spinraza Dose!! December 2nd, funnily enough. The triple 2, 222, has a few different meanings. I’m just gonna take it as a lucky day and hope for the best like I typically do. But I’m definitely keeping my eye on this next dose. With this dose, within the last few weeks, I’ve regained two abilities I haven’t had in a long…

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Spinraza Dose 21 and The Annual Candle Lighting

Greetings, creatures of the interweb. I survived my 21st Spinraza Injection! It was a rocky discharge, when initially the procedure had gone relatively smoothly. Granted, the appointment was different from the start. When the nurse told dad that he could “wait in the waiting room”, I knew we were working with newbies. I did not anticipate them having me getting up too early, however. When I got…

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The Next Dose

7.31.21 Greetings, creatures of the interweb, it’s that time again. 107 days since my 20th injection, 12 days until my 21st. 12 more days of feeling like a brick, until my body can be mine again. Until then, my pain has thankfully not been overwhelmingly unbearable and luckily my abilities have not dwindled significantly like they typically do. The only new “side-effect” I’ve noticed is my…

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𝓢𝓹𝓲𝓷𝓻𝓪𝓷𝔁𝓲𝓮𝓽𝔂

A poem about how I feel about Spinraza.

Anxietygets the best of meas I’m simply sitting here,thinking endlessly. There’s nothing to fear,that much is clear,except my fight with gravity. Being held in captivityby my disabilityhas slowly sucked me dry. A medication giving myDNA a resupplyof what I need to survivehas been all but easy.All consuming, more likely. Once free mentally,all that’s there is anxietyof my unknown future. It’s…

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Tuesday 3.18.2024

Got a text from my Family Access Manager telling me I’m due for my 20th dose of Spinraza around April 11th. It’s been 92 days since my previous injection, and I started feeling my decline at 80 days. The last 5 days have been agonizing for my legs, as each time I get out of the shower, the worst nerve pain I’ve ever experienced keeps occurring. It’s as if I have a sock of dogs nails clawing at me…

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Sunday 6.20.2021

7:41pm Okay, it seems that when I have good news, I’m terrified of putting it on here due to not wanting to jinx anything… But I need to get down everything before tomorrow. Why before tomorrow? Injection #12 is finally happening at 4pm tomorrow afternoon.  So I’m just going to put a list of things that have happened over the past week. My right leg feels completely detached from my brain. I…

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Wednesday 6.2.2021

6:21pm Good news and bad news. Good news: I did physical therapy today and did very well. Spinraza also got approved for prior authorization. Bad news: I’m not getting my injection until at least the end of the month.

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Tuesday 6.1.2021

1:12pm I forgot to document it last night, but my spine was not happy. It felt like someone was twisting it the wrong way.  Today I have zero energy. It’s getting worse every day and I’m freaking out because I have to do “important” things, but I just want to sleep until my unknown injection date.  I was told by my Family Access Manager with Biogen that there are some circumstances where the…

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Wednesday 5.26.2021

9:45am Okay this isn’t exactly a daily update… But hey, I remembered this exists.  My left arm is getting worse. I did digital art yesterday, as that’s the only way I can do art right now without completely overdoing it. But now my left arm feels like dead weight. I have far less stamina than I normally do, which is debilitating in itself.  Riding in the car isn’t comfortable…