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,
(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)
I Flunked the Debunk…
Tomorrow morning, the permanent Spinal Cord Stimulator (SCS) is going to be implanted. I attempted to debunk my feelings on it while flying to Chicago earlier today, but I was unsuccessful in a huge way…
I’m all over the map. Nope, not just physically - mentally too.
I’m a human mood ring, one moment hot, the next moment cold. Nope, not just physically - emotionally too.
Tomorrow should be interesting, eh? xx
Not to sound like an overly poetic goon, but yesterday, all my troubles really did seem incredibly, incredibly far away.
On the sunny beaches of Tobago - far from the cold, sterilized hospital rooms of Chicago - here’s what there was:
I know, right?!
Poor Josh is more of a do-er than a sit-er, but we found something for him to do with the job as official hat stand.
So happy with my new underwater camera!
And with being close to Mr. Josh, my boy.
(Read more after the jump…)
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.
Spinal Cord Stimulator Trial: So far so good!
After an initial rough couple of days (picture/video and update on that to come once I get all my pictures and videos sorted) which resulted first in an ICU bed, and then in me having to stay in the hospital, due to extreme pain in my back at the site of the incision - I am now out of the hospital and back on my feet (oh, I love a good pun!)
As of right now, I am SO pleased with the Spinal Cord Stimulator. Literally, could not be happier! It exceeds all expectations at the moment and is completely different to what I thought it would be. Is that what y’all thought too? There have of course been a few glitches and I’m sure there are a few more to come, but for the most part… I love it. In fact, although I’m still testing, I’m booked to implant the permanent SCS on April 2nd, 2012. :)
Here I am walking properly (in exercise clothes and exercise shoes with laces!) for the first time in 2 years! Excitement (queue goofy arm movements…) I hope the video works and I hope you’re all well. I’m sorry about the sound, but as you can hear we’re in the Windy City.
Lots of love, Danielle xx
This is my incision site for the demo SCS surgery.
It isn’t nearly as bad looking as I thought it would be, but boy is it MUCH more painful! Ahhh! I hate to be a drama queen, but as my CRPS/RSD has already spread to my back, this recovery period has been a bit of a nightmare upper-body-wise.
As usual the good outweighs the bad though! The relief in my legs continues to make it more than worth it. xx