20
Aug
CRPS & Ketamine & Spinal Cord Stimulators! Oh, My!
The ups and downs of what has truly become a real-life medical circus ;)
I leave for Chicago & a dreaded 3-day ketamine infusion tomorrow. I’m seriously disliking this fact, yet I’m also trying my very best to positively visualize that it will all go incredibly smoothly.
Another procedure already? Why???
Well, since my successful Spinal Cord Stimulator (SCS) was implanted, to aid with the excruciating pain of my lower body - learn what an SCS is by clicking here! - I’ve had serious pain at the two incision points in my back (I already had CRPS/RSD in this area pre-surgery) along with general CRPS/RSD pain in my upper body which seems to be getting rapidly much worse. As the incisional pain is still generally quite new, my doctor has hopes that he can knock it out with the ketamine. Prayers for this, please! I always greatly appreciate (and reciprocate if I know about them) any sort of positive vibes sent my way :) x
The good news!
At the moment, I am SO happy with the SCS that I have. It took a while to get used to it, don’t get me wrong. I won’t lie to you, I HATED IT at first and found that I almost couldn’t feel the relief for the first few weeks due to the ridiculous muscular pain in my back that almost no medicine could scratch. Then of course there was the bizarre strange new buzzing feeling that I needed to adapt to. The device would be far too strong, and then far too weak. I was by no means an SCS Remote Control pro! However, my doctor asked me to stick it out, and as I’d gone through 3 surgeries (I’m sure we all remember the annoying fact that I had to have the device repositioned almost immediately?) I trusted him and listened. For that, I am SO happy.
If there’s one piece of advice I can give… listen to what my doctor told me (unless your doctor has told you something very specifically different. Remember… I’m not a doctor or medical professional!) and do the same! Also, unless of course you’re SCS is buzzing in the wrong places as mine was originally.
Of course, it’s important to note that my SCS does not provide 100% relief. Oh no!!! In fact, it doesn’t even provide 50% relief - but that was never promised or expected. Many may read this and wonder with such a big hassle and such little relief, why I even bothered… but to my CRPS/RSD followers, I’m sure they can understand. I wish that they could ALL experience my relief level of perhaps 40% on a good day. I may be in bed with a flareup at the moment and pain may still be a massive part of my life - but hope is back. This device has changed my life.
(Photo Credit: Boyfriend Josh, Post-SCS surgery: San Francisco Pride 2012)
![As Two More Join My Gang…
“I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived.”
(Quote from Chris Cleave’s very fabulous book ‘Little Bee’ , which I suggest you all read immediately.)
Be Well - Danielle xx
RELATED POSTS:
- Pain and Broken Boards
- Your Pain has a Purpose
- I know I have the body of a weak and feeble woman…
]]>](http://24.media.tumblr.com/tumblr_m70e0tIf8d1qkc92eo1_400.jpg)
