10.5.18 I’m Blue, Literally

This is going to be a little rambly but it’ll hopefully come back around to understandable, maybe baby. Regardless of where this post takes us, it’s Friday and that in and of itself is cause for celebration.

Sunny loves Tova, we’ve discussed that before. This weeks episode didn’t disappoint. I’m not here to debate the differences in cancer and ALS, but I am going to steal some quotes from the show.

This got me in the feels because this is so so much the driving force behind my everyday, every decision, and every effort. I’m not going to rewrite the story of ALS, we’ve read the predictions and know what is coming, but I can guarantee you that I’m going to bring an attitude and spirit to this journey.

Please understand that I’m not in denial about my future with ALS. I know how bad this is eventually going to get, and I know that this is eventually going to kill me. We say ALS sucks all the time, but that doesn’t even scratch the surface of it. I’ve watched friends succumb to the effects of this disease, it’s heart wrenching, it’s painful, it’s ugly, and it’s so unfair. With that being said, I have to take control of what I can and for me that is my attitude towards the world around me and how I approach each day.

One difference in this statement and my ALS diagnosis is that “the books” tell you everything about what is coming. No one knows the timeline of how it’s all going to play out, but we know and can already see what this disease is going to do to my body. BUT my hardheaded, Type A, optimistic beyond reason self refuses to let my ALS journey happen without some humor, some grace, and a whole lot of fun. Cue Wednesday nights ridiculousness 😳

Here’s the story:

I know this is the SunnyStrong tattoo that I want to get. A few girlfriends have already gotten their tattoos so I’m excited to join the ranks. Kenneth saw the ad for Inkbox and had the great idea to test drive the tattoo before making it permanent. I have tattoos and have always been very conservative with their placement in order to remain “work place professional”, but y’all I’m completely retired at 31 – not that I’m going to go nuts – so those norms no longer apply to me. Winning! Also, as morbid as it is to think about, one day my entire out of bed existence will happen from a wheelchair so anything I do now – especially in terms of strength inducing tattoos – needs to be considered from that perspective. So forearm tattoos are now socially acceptable in my journey BUT I’m still going 90 to nothing in my mind and having something in my peripheral may drive me insane.

Rambly, remember? We did our Inbox tattoos and Kenneth wore the gloves and my hand is blue. I can’t stop laughing about it. We’ve tried different things to get it off and it’s sticking around for the time being, package says up to 2 weeks – ha! I can tell you without a doubt that I will not be getting the blue hand tattoo, ever.

Not sure what the moral of this post is but I hope you got a laugh at my expense out of it. Happy Friday!

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