My calendar’s marked! The clock is ticking! That can only mean one thing… 2013’s Rare Disease Day is just around the corner and the countdown is officially on!
It’s a totally bizarre thing to be excited about a day for ‘rare diseases’. I accept that. In fact, I’d probably have looked at you as though you were a total loon if you’d spoken to me excitedly about this, before I actually ‘contracted’ (there’s never a good word to use there) one myself…
Like many things in my life now, however, my little run in with the chronic pain and illness that is Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy (CRPS/RSD), in all it’s might and glory, has shifted my perspective. Not only am I excited about the fact that there’s a day for the acknowledgment and recognition of rare diseases, but I think YOU should be too. Here’s why…
By definition, any disease affecting fewer than 200,000 people is considered to be rare. Now imagine the strangest, most heartbreaking conditions you’ve ever heard of - whether that be via this blog, National Geographic, the Discovery Channel, or perhaps even ‘House’. I’m guessing they were few of a kind, weren’t they? Things that you’d never want or be able to dream up in your wildest nightmares. Perhaps you’ll even remember reading here about the fact that CRPS/RSD was declared by Fox News to be one of their Top 5 “Crazy Diseases”.
In the US alone, there are 7,000 of these ‘rare diseases’, meaning that approximately 30 million Americans are currently affected. Let’s break that down, shall we?
Almost 1 in every 10 Americans currently suffers from a rare disease.
So take a look around! Think about those you know. Consider others. Consider yourself! Spread the awareness. These are the most heartbreaking of illnesses! With your help they can get the funding and assistance that they deserve.
So, just tell a friend. Spread the word. Reblog this! Tweet about it. Get the message out there, and before we know it…maybe that 1 in every 10 will be whittled away before we know it…
"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending."/ Carl Bard
Hurray! I woke up on Sunday morning feeling as though the massive weight bearing down on me (yup, that one…) had been lifted. Instead, replaced with a fantastic amount of energy and positivity.
So what’s a girl to do when, once again, given a whole new lease on life? Well, go to the Ojai, California Farmer’s Market, of course!
I’ve spoken before about a benefit to currently living in California being the close proximity to all of the gorgeous sites & sounds. Whale watching on one side! Yosemite on the other! Even Las Vegas or Napa aren’t too distant.
Ojai, however - a charming and artsy, western-style farming town close to Santa Barbara - might be at the top of my list…
It’s a bit of a drive, but for the slower pace, unique art galleries, pure atmosphere, and delicious food waiting at the end - any drive would be so worth it!
Of course, there were your typical market stands with fruits, veggies, and the best in homemade olive oils, soaps, cheeses, etc. But then, well… then, there was this guy…
A stroke of genius, no? You can clearly see I was a little bit skeptical at first, but never one to say no to something that might potentially be really positive…
… I went ahead and cashed in. And my review? Actually, there was not a drop of creepiness in sight! Just pure joy all around.
Thought about y’all these last few days. Hope you had a great, pain free weekend.
What did you get up to? - Danielle xx
You can’t connect the dots looking forward, you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something: your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life. / Steve Jobs
The above inspirational image + my water-baby life as a Trini together = the perfect metaphor for my life as a ‘patient' (so weird!) actively attempting to live positively despite extreme chronic pain & a diagnosis of the debilitating neurological condition known as Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy (CRPS/RSD).
I’m not currently at home (I’m up in the States again for the ketamine infusion treatment, remember?), but I sure am longing for it! As today is Sunday, a day in Trinidad & Tobago that usually revolves around the water, often spent lapping up sunshine at the beach or out on a boat… Help me get over my (understandable) homesickness as we go ahead and take my metaphor quite literally…
Ps: All photos were taken post-accident, hence, post-diagnosis. So, I’m sure that many of my fellow CRPS/RSD sufferers will understand that due to the disease’s tortuous symptoms I’d rather stay curled up on a heating pad in bed, making it somewhat difficult to get me out of the house. Roadblock? Yikes! It would seem so, huh?
It’s unfair, difficult, and ridiculously bloody painful on top of what we already feel - but if you’re a CRPS/RSD sufferer looking for relief (like me!) studies have shown that continued long term exercise & involvement may just be the ticket (click here to find out why). If getting up and out of my bed is a crucial and distinct part of my healing process, I’m definitely gonna try my best to make it work - needing major inspiration along the way, of course…
*SO: LET THE FOLLOWING PHOTOS STAND AS A TESTAMENT TO THE FACT THAT PERHAPS THE OUTDOORS AREN’T OH-SO-TERRIBLE, BUT MAYBE ARE PRETTY GREAT AFTER ALL :)
Don’t leave me hanging though! If I can sometimes brave it, then you can too!
(So long as your healthcare professional agrees of course…)
We found this poor little baby leatherback turtle completely by chance in a nest that had been smashed in by hunters. He was totally crusted over by sand and on the verge of suffocation - however with a little love and care, he bounced right back and was able to be released. Keep your eyes open, it’s not necessarily always people who inspire!
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