My philosophy is no pain, no pain.” / George Carlin
If Your Weather Outside Is Frightful…
Shut the curtains, turn your eyes away from those dreadful icicles outside, and enjoy the looks of these cool little blue numbers instead.
Just because we may not be able to wear them at the moment due to our pain, doesn’t mean we can’t use them as our motivation for the future, does it? And added bonus..? They’ll be on sale by the time you’re up and about!
(Ps: for those of you lucky enough to wear them now… they come courtesy of Brian Atwood. Get them at Bergdorf Goodman.)
Listen to @The Filthy Souls…
No need for me to waste words telling y’all that “House of the Rising Sun” is clearly a classic. As half of the world’s all-time favorite song, it’s covered a lot. Oh man. A lot. And as such, we’re harsh critics…
But, anyone who can sing this song with as much grit and soul as Dave Green of ‘The Filthy Souls’ definitely gets my vote. I love his cover. Love it. Even better? He supports the CRPS/RSD cause. I don’t think we could ask for more really…
God Bless America. xx
Oops! I meant to put this up yesterday! But in addition to September being National Pain Awareness Month… this week marks National Invisible Chronic Illness Awareness Week:
A worldwide effort to bring together people who live with invisible chronic illnesses, and those who love them.
Are you a blogger? Well, join the effort!
You’re of course welcome to participate at anytime throughout this week (head to www.invisibleillnessweek.com for one of those handy-dandy badges) and of course you’re more than welcome to continue throughout the year as well! In fact, your efforts would be applauded in the fight to raise awareness as well as in raising hope, support, and encouragement for others going through similar experiences.
I’m rushing off to Physical Therapy, but more on Invisible Illness Week once I get back. xx
Happy Feet go Hiking!
This morning, I was woken up
slightly too bright & early as I officially began an intense physical therapy program that will go for 6-weeks and work as a pain management tool. At this point, I’ve tried almost everything! So, working on the back of my recent SCS implantation & ketamine infusion relief, we’re going back to basics as I simply try barreling through this disease in order to reset my sympathetic nervous system & hopefully gain relief.
Huh..? What..? Why..?
Well, basically my system is constantly overstimulated which leads to extreeeeme pain whenever I do, for the most part, anything. No one wants to be walking down the street to suddenly feel as though they’ve been lit on fire, right? No thanks! Not fun! It makes good sense then, that often I’ll stop what I’m doing and take a little break. While this feels great for me as the patient, unfortunately it’s a bad idea disease-wise as my hyper little nervous system then thinks it’s done the correct thing. Make sense? So, the next time I take a walk down the street, it freaks out causing perhaps even more physical-pain, and definitely acting as a pain in my ass.
When I said we’re going to barrel through, I really did mean it. Under a strict routine designed mainly by my doctor - I’ll be walking, hiking, swimming, yoga-ing, stationary biking, etc. Up at 8am to swim for an hour, before walking at least a mile, then a break, then exercises. And so on it goes…
Eeesh! Right!? I don’t even know what ‘eeesh’ means necessarily, but I’m fairly certain that it perfectly explains how I feel about this whole thing…
As a former athlete, I am excited about it, please don’t get me wrong! But my emotions are also annoyingly complicated, I suppose based on the fact that due to pain I can barely (and sometimes not) wear the shoes needed to do all of these activities! It’s overwhelming and certainly very daunting!
Despite this though, I want to win. I want to beat this. ‘They’ say that there’s no cure, but I know that I’ll be fine. I always am! And really, who are ‘they’? ‘They’ can’t even decide on a single name for this disease! Is it Complex Regional Pain Syndrome (CRPS) or is it Reflex Sympathetic Dystrophy? I made the decision early on not to listen to ‘them’. I will never let anyone take my hope.
Prayers & good vibes please! I’ll definitely need them.
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)