Well, the permanent Spinal Cord Stimulator is officially in!

Between all the electrical leads going into my spine, and now having to be controlled by a remote for the rest of my life - I feel like a robot*.

Not surprisingly, due to the enormous pain in my spine, I’m still in the hospital, though hopefully I’ll be getting out sometime tomorrow. I figured that I’d be in pain though, so I’ve prewritten some random posts that’ll continue to pop up should I temporarily not be able to write. I’d never leave you guys high and dry! Keep checking in… x

I honestly cannot thank y’all enough for your amazingly supportive messages. Each and everyone of you have come to mean so much to me. I’ll be sure to update you properly once I’m able, and to write back to those of you who very kindly wrote in.

Loads of love,

Danielle xx

(image via Etsy)

*(Ps - The cheesy ‘Styx’ lyrics in this post’s title seemed perfectly fitted to my new robot persona. I know, I know… I’m well-aware that I’m a massive nerd for loving this song. My sister has had 25 years to drill it into me. But it’s TOO good!!! If you’ve never heard it, or if you’re a huge fan too click here to listen on YouTube. I don’t own the song nor did I upload it. xx)

It is with great pleasure that I am able to report that yesterday marked the end of my 9 day Spinal Cord Stimulator trial. 

Pleasure? As in happy for it to be gone?! I know, I know. A mere 5 days ago I was near floating over the streets of Chicago, drunk on euphoria, waving my hands around like a idiotic fool. Now, please don’t get me wrong, that joy over partial pain relief still stands. But the truth is - and this is more than a little bit difficult to put out there on the internet - a tidal wave of emotions smacked me hard around the 3rd day of the trial, sucking me under only to have me emerge as a slightly cross-eyed, dazed and confused emotional wreck of a person. 

I fear writing something like this. In fact, I fear negativity on a whole. I dread the weight of it. The way it just hangs, clinging to everything you attempt. It’s terribly sticky, don’t you think? And quite the bully! With its gang of friends - anger, depression, anxiety, and of course extra pain always joining in on the fun. This is why I am at times guilty (I believe we all are) of compartmentalizing. Oh yes! Sound familiar? But when you don’t properly deal with things, negativity is bound to wait - lurking, sticking, waiting to cling. 

And so, on the 3rd day of the trial everything began to bubble. I believe it was triggered by of a combination of the extreme pain in my back at the incision site (I have CPRS/RSD in my back so this pain is not something that will be felt for everyone in an SCS trial), the exhaustion of not being able to find a comfy position to sleep in, but mostly by the sudden realization that at such a young age, I’d essentially become a robot.

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Hey, you guys? 

My demo spinal cord stimulator goes in tomorrow. I know you probably had it marked in your calendar, but I just thought I’d remind you. 

I could not possibly be more excited! It’s like… you know when you were little, and you would think of something lovely (and probably semi-annual or sugar-filled) and subsequently get so excited that your heart would become so overwhelmed it felt ready to pop? And then as a reflex your body would do a little wriggle or squirm because there’d be so much adrenaline in there floating around just from that one thought? 

Yes? No? Maybe? Weird? 

Anyway, I do that. And it’s happening every time I think of tomorrow. I am so hopeful, excited, and ready for this procedure!

Tomorrow… Eeee! xx

RELATED POSTS:

- Touchdown in Chicago for the SCS Trial!

And so the show will go on after all! My goodness, it’s been a roller coaster of emotions over the past week or so hasn’t it? Wow! (If you’ve missed the drama click here to get caught up… and if you’re new click here to read the story of my original accident and CRPS/RSD journey).

Firstly, I want to thank you all so much for the heartfelt comments, messages, and emails that have been both supportive and in commiseration. I couldn’t have gotten through the last week or so without y’all. Also, thank you for your voices in general. It is wonderfully inspiring for me to meet so many people dealing on as many different levels and as incredibly well as you all do every single day. How dare I complain when you guys manage it so well and in many cases with so much more to complain about? It keeps me in check! Positivity breeds more positivity, and so I thank you from the bottom of my heart. :) 

Secondly, a massive thanks to my doctor (Dr. Timothy Lubenow at Rush in Chicago) and his team who managed to get the insurance decision overturned. Thank God! It was a long, rocky, and excruciatingly painful road to actually even find a doctor who was the right fit for me, but with extreme patience we got there in the end. Have you been down that road too?* There was the problem of doctors not believing me. The problem of them having no game-plan. The problem of them being very negative. The problem of them thinking that I’m in pain and should therefore also be very negative. The problem of them making me feel downright uncomfortable. The problem of them making me outright cry. The problem of zero treatment options. The problem of them gender stereotyping my pain. The problem of them not being very medically aggressive. The problem of them being waaay too medically aggressive. And so this list went on and on and on until finally I found someone that I’m confident and very pleased with. Anyway, THANK YOU! My SCS will go in on Feb. 28th and I could not be more excited. I feel incredibly positive about it all, riding high on your comments and messages. :)

On a more serious note, as Miss. Ally wrote in my comments, the best thing we can do is to NOT SHUT UP about the issue with insurance and chronic pain, especially CRPS/RSD. It is not fair and we do not deserve this. Everyone needs to know that this is a real issue. It’s unfair that those at the insurance company get to decide on our medical treatment instead of our doctors. PAIN IS REAL. OUR PAIN IS REAL. Awareness is key and I truly believe that we should use all of our resources to get the word out there. Retweet all links to every article! Put it on your Facebook! Tell your friends! Post stuff on your blog! Insurance is less likely to mess with a disease that is more of a ‘contender’, so through increased awareness let’s get ourselves in the ring. Funding for research may also make a difference. Perhaps with increased funding, chronic pain and CRPS/RSD will become more of a big-time player in the world of insurance. Of course, this will eventually come through increased awareness, but… if you’re willing and able - please click here to donate through the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). It is SO appreciated!!!

I’m off to celebrate! 

Lots of love,

Danielle xx

*If you’re currently looking for a doctor and are on the above frustrating road that I spoke of, I feel for you very much and wish that I could hold your hand. In fact, I’d be pleased to if you suffer with CRPS/RSD - feel free to email me for friendly and unprofessional, yet hopefully helpful advice: theproject3x5@gmail.com. 

(image via addictedtoescape)

RELATED POSTS:

- Insurance !@#$% Rant

- My Story (as guest blogged to Ramshackle Glam)

- Each Time is the Worst, then it Gets Worse

- This is Not the Life I Ordered