Khronicure

project3x5:

Currently on the way to my mailbox!

I’m sure so many of you (if not all) can relate to the fact that once diagnosed, you had to fish around from books to the internet to pamphlets in order to simply wrap-your-head around what was happening to your body, and in order to become informed about your pain.

Which is why upon reading this book review (click on the headline), I immediately clicked order! Of course, it’s not a miraculous encyclopedia filled with all the information we could ever dream of… but FINALLY it’s an indispensable resource to provide us with a better understanding of our pain and how to defeat it. YAY! 

According to the review: written in user-friendly language, it has sections on back and neck pain, headaches, arthritis, cancer pain, fibromyalgia and neuropathic pain (including CRPS/RSD). Among many other things, you can learn about nutritional supplements, the importance of different therapies, medications and side-effects, the benefits of multidisciplinary treatments, interventional treatments (ex: nerve blocks), and psychological treatments, etc.

Oh, and did I mention it’s being endorsed and recommended by the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)? 

Happy Reading! xx

project3x5:

Yay! Check out Project3x5 as a guest blogger over on Ramshackle Glam.

What’s the etiquette on reblogging oneself? Am I doing this all wrong? Meh. Whatever. I’m very excited and honored as Ramshackle Glam is a site I very much enjoy. I couldn’t be more thankful to have been given such a great platform to spread the word for Complex Regional Pain Syndrome (or Reflex Sympathetic Dystrophy). 

Head on over to read the story of my accident, learn more about CRPS/RSD and to find out how you can donate to this awful chronic illness through the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). x

ramshackleglam:

Someone I’d Like You To Meet

I’m about to introduce you to one of the bravest women I’ve ever come across.

In the few weeks that I’ve been corresponding with Danielle, I’ve been struck by one thing above all: this girl is joyful. She’s lived through an unimaginably horrific accident in the Middle East, months and months of excruciating surgeries and rehab, and a chronic condition that was named one of the “5 Craziest Diseases” by FOX News…and her attitude - the joy with which she lives her life, and the peace that she radiates - is an inspiration. This woman is an inspiration.

You need to meet her. Here’s Danielle’s story. There’s nothing I can really do but smile when I think how it’s the most clichéd of statements - “a moment can change your life” - that has come to best explain the most un-clichéd of situations, and the one that has most defined my life. In March of 2010, while studying at UCL for my Masters in Human Rights, I took a vacation to Qatar (in the Middle East) for a friend’s wedding, and what was to be week of traditional festivities. Day Two’s itinerary called for a camping trip hours into the desert. So, after loading up the SUVs we headed off to a place so far from the city it now placed us in view of the Saudi Arabian border patrol. I’m tempted to spend this section babbling on about Qatar’s natural beauty, but I think that’s what trauma counselors would call avoidance. So, long story short: the vehicle I was traveling in flipped, rolled, and ended up landing on the passenger (or in other words: my) side, crushing me underneath it. Of course I had many injuries, but my poor little left leg got the brunt of it. And by “brunt”, I mean that in order to even get me out from underneath the wreckage they decided that they would have to amputate. Go figure: all of this was happening miles into the desert with no painkillers, right?

Anyway, after an excruciating several-hours’ wait and the fight of my life (a girl needs her feet! a girl needs her heels!), the powers that be were finally able to get a helicopter and an angel of a paramedic out to me (but still no bloody painkillers!). Successfully, they managed to remove the muscles from the top of my foot and free me - mangled bits and all - from the damage. Disgusting? Yes. Exciting? Very. Once at the hospital, they performed the first in what has now come to be 18 (soon to be 19) procedures. It may sound airy-fairy to some, but I’m a huge believer in the power of positive thinking. The doctors on-site told me that there was absolutely no medical way they could save my foot. Every doctor I’ve met since who sees the x-rays or hears my injuries looks down at my still-there (but scarred, obviously) foot in absolute disbelief and awe.

Much too wounded to fly, I initially remained stuck in a Qatari hospital bed. Now, don’t get me wrong: I usually love the Middle East, but this version was “Locked Up Abroad”. Grim, to say the least. It would have been so simple to slip into a dark hole, and I’m 100% sure that had I gone this route my body would have reacted, an awful infection would set in (I was in the desert for hours with no skin on my foot - sorry! so gross! - there was so much sand and grime in there it’s literally a miracle that this didn’t cause an amputation in itself) and my absolutely fabulous heel-wearing days would have been history. However, thanks to the power of positive thinking, the opposite happened. In fact! Ramshackle Glam should be credited here! Blogs have become a massive part of my life as a patient, and I read Jordan’s for positivity, hope, fun and inspiration. Perhaps it was in combination with the morphine, but she really did lift my spirits at time when I needed it most. I’ve since returned to the States, and my bones, etc. have healed up nicely. I began re-learning how to walk in January of 2011, and I’m starting to tentatively walk more and more without my cane as we speak. It’s pretty fabulous! I’m the luckiest, happiest girl in the world.

Unfortunately, due to the massive amount of nerve damage, I was left with a debilitating chronic neurological disease called Complex Regional Pain Syndrome, or Reflex Sympathetic Dystrophy (CRPS/RSD) - which is also widely known as the most painful condition in the world. I find it impossible to explain so I’ll simply say that it is considered by the McGill Pain Scale to be above the pain caused by the amputation of a digit, cancer, and even… childbirth. Yup! Ranked one of the ‘5 Craziest Diseases’ by Fox News, it was described as “being tormented every waking moment of every day by searing pain in your limbs.” Needless to say, CRPS/RSD is not very fun and entails many medical procedures and some ketamine infusions, whereby I’m flooded with horse tranquilizer for 3 days in a row. Nevertheless, I get by with a little help from my blogs :). Never heard of this horrifying condition? Neither had I! There’s a shockingly low awareness level that desperately needs to be remedied. Go to the Reflex Sympathetic Dystrophy Syndrome Association’s (RSDSA) website to both learn more and (if you’re able and should so desire) to donate. I’m excited to now be able to say that you can also learn more about this chronic illness on a more personal level through my blog, Project3x5. There’s a lot of negativity towards the condition from many other sufferers (and who can blame them, really?), so Project3x5 aims to be a source of hope, positivity, fun, and possibly even inspiration through the daily happenings of my own life. We also hope to raise that staggeringly low awareness level for this debilitating condition. I may be in pain, but with all of this going on I am definitely very content in my mission. So, in keeping with the starting theme of clichés: your life can change in an instant, but funnily enough you’ll always end up right where you need to be. And with that realisation…I just have to smile. Lots of Love, Danielle x Links: - Follow Project3x5 - RSDSA website - Donate to CRPS/RSD - Any questions/comments can be sent to theproject3x5@gmail.com