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17

Apr

Actually, it’s better than ok! Throw out your 5 year plans & go with the flow ;) xx #makeplansandgodlaughs #positivefromnegatives

Actually, it’s better than ok! Throw out your 5 year plans & go with the flow ;) xx #makeplansandgodlaughs #positivefromnegatives

18

Feb

#WinBSCHOOL!!!!

Hi, you!

How’s it going? Are you having a good week?

Have you ever dreamt big? Really big? In fact, what feels like maybe almost sometimes a little bit scary big - but scary in a good way!!! In a way to where you get soft, fluttery butterflies in your tummy - not the steel tipped ones. Well, that’s where I am right now, and I couldn’t be more excited about it! To me, there’s no better feeling than being pushed out of your comfort zone - especially for a good cause! And especially when you feel so proud of the end result!

See, I’m up for a scholarship to the wonderful Marie Forleo’s B-School! The application was a video via YouTube (see that video above? that’s it right there!) and the win would be a way for me to really learn how to skyrocket TheProject3x5 and CRPS/RSD advocacy to the next level.

To be a little more specific, based on my own experience with Chronic Pain and Chronic Illness - through my disease CRPS - I want to bridge the gap & make it easier for other patients from the terrifying starting point of initial diagnosis right through to figuring out treatments and finding support groups. Stress only amplifies illness! So, let’s get rid of that pesky little problem! I’d be sure to instead work TheProject3x5 around mindfulness and meditation. Again, using my own experiences to make sure it’s a realistic endeavor.

I get excited just thinking about it all!

But, like I said… first up, I need to win the scholarship! And here’s where you come in…

How?! Well…

VIEW MY SHORT VIDEO & SPREAD THE WORD!
- The video above explains everything! Watch it on as many devices as you have, because the greater the views I get, the greater a shot I have.
- Then click here, to like the video on YouTube - again the more likes I get, the greater a shot I have!
- It’d mean the world to me if you were to stay on the YouTube page & make a positive comment about the video - this step is super important* because again - you got it! The more positive comments, the greater the chances are that I’ll be awarded the scholarship.

People get thousands of views! So let’s show them what Trinis, TheProject3x5, and The Power of Pain Communities can do here! :)

And did I mention that sharing is caring?

LET EVERYONE YOU KNOW SEE THE VIDEO!!!
Either via Facebook, Tumblr, or Twitter, perhaps even Pinterest! Any other social media platform should be just fine, I’m sure!

Just please make sure that however you decide to share, you also put:

1) the hashtag - #winBSCHOOL on it
2) my name (Danielle Alexis Cosgrove)
4) the original video YouTube link - http://youtu.be/HdMCg7y9Hk0
3) and then this link as well, to promote B-School for Marie :) - http://joinbschool.com/

Thanks a million!!! You’re the best and I hope you have a fantastic week! xx

11

Feb

Laughter is the Best Medicine!

Remember the good old days when Thursday night was for watching “30 Rock" and Liz Lemon was for making you feel that much more secure in your own skin thanks to her never-ending bizarro and crazy-hilarious misgivings? Oh, history!

Whether you were a great fan of the show, caught it once or twice, or (quelle horreur!) have still never seen it; if you suffer from Chronic Pain there’s no denying you’ll be able to relate on some level to Phoebe (Emily Mortimer’s character) and her chorus of “Oww!

I live with the rare, and for the most part invisible, Chronic Pain condition Complex Regional Pain Syndrome (CRPS/RSD) and found myself in a fit of giggles thinking back to the many times strangers have stared at me - someone seemingly in good health - while I almost subconsciously “Oww!” my way through a task.

After all, if you can’t beat it - LAUGH!!! :)

Hope you’re well! Have a wonderful day. - Danielle xx

Ps: I’ve been undergoing pretty intense inpatient ketamine infusions so haven’t been able to write properly for ages. I miss you guys! I’ve been doing my best to update my Twitter feed, Instagram, and Pinterest accounts - so be sure you’re following me there so we can keep in touch. If you’d like more contact information, click the “Contact" tab to the left!

22

Jan

I know you all lead very busy lives, but PLEASE take a second to watch this video so that we can raise awareness for Complex Regional Pain Syndrome (CRPS/RSD) and help this poor 11-year-old go back to living a busy life too.

No one her age should have to suffer the enormous amount of pain caused by this disease. So, if this video touches you in any way… help other young CRPS sufferers tomorrow (Friday, 24th) by wearing “crazy socks” (yup, it’s a thing!) It doesn’t matter how long you wear them for - just take a picture, post it to the following Facebook page, and enjoy the feeling of having done your good deed for the day!

https://www.facebook.com/CrazySockDay

19

Sep

It’s a Winnie Quote and The Giving Keys Mash-Up Sort of Day… xx
Oh, weather!!! You’re now coursing/cursing through my veins. And you’re bloody steamy in the worst of ways. Hot and humid. Stop burning me! All of this really isn’t very becoming.
I’m also convinced that somehow mosquitoes - the big, Southern, buzzy, beyond LOUD kind (I did say they were Southern, did I not..? hehe) - have mined their way in to my Vascular and Nervous System. I envision them sloppy drunk having chugged my blood and gnawed on my nerves turkey-leg-style to a sickening fill. None are older than high-school age. Unable to handle their drink nor able to contain their immaturity and excitement at such unbridled excess, they’re having a field day! Assholes. I’m definitely still talking about the fake mosquitoes I imagine in my veins by the way…
And so the monsters, massive in the scheme of cells, take to setting off fireworks that ZING! through my bloodstream, each spark setting a new fire that my body just has no energy to deal with anymore. The mosquitoes buy the fireworks from their maniacal almost evil genius red-ant friends. Sorry! Did I forgot to mention that they hang around too? Oh, yes. But not really. It just feels like it. A lot these days. And so, I’d really like this weather front to move out now. Until then… 
It’s a Winnie quote and @thegivingkeys mash-up sort of day. xx
#strength #braverthanibelieve 

It’s a Winnie Quote and The Giving Keys Mash-Up Sort of Day… xx

Oh, weather!!! You’re now coursing/cursing through my veins. And you’re bloody steamy in the worst of ways. Hot and humid. Stop burning me! All of this really isn’t very becoming.

I’m also convinced that somehow mosquitoes - the big, Southern, buzzy, beyond LOUD kind (I did say they were Southern, did I not..? hehe) - have mined their way in to my Vascular and Nervous System. I envision them sloppy drunk having chugged my blood and gnawed on my nerves turkey-leg-style to a sickening fill. None are older than high-school age. Unable to handle their drink nor able to contain their immaturity and excitement at such unbridled excess, they’re having a field day! Assholes. I’m definitely still talking about the fake mosquitoes I imagine in my veins by the way…

And so the monsters, massive in the scheme of cells, take to setting off fireworks that ZING! through my bloodstream, each spark setting a new fire that my body just has no energy to deal with anymore. The mosquitoes buy the fireworks from their maniacal almost evil genius red-ant friends. Sorry! Did I forgot to mention that they hang around too? Oh, yes. But not really. It just feels like it. A lot these days. And so, I’d really like this weather front to move out now. Until then… 

It’s a Winnie quote and @thegivingkeys mash-up sort of day. xx

#strength #braverthanibelieve 

03

May

HOW I OFTEN FEEL ABOUT CRPS/RSD & NERVE PAIN MEDICATION.

Jules Valles in ‘L’enfant’: “L’ says something absolutely brilliant that should be taught the World over! Not to mention it should be taken in a way that may be applied to all of us dumbfounded by such wisdom ;espace m’a toujours rendu silencieux”

(English: “Space had always defeated me to silence”.)

Layman’s term’s: Oh lawd! This is overwhelming!

04

Apr

Chronic Back Pain? xx
(Image via Alejandro Annicharico)

Chronic Back Pain? xx

(Image via Alejandro Annicharico)


26

Mar

It’s All Coming Up Roses…
In New York City with my Dan!
The grand experiment continues… xx

It’s All Coming Up Roses…

In New York City with my Dan!

The grand experiment continues… xx

NEW MEDICAL TECHNOLOGY! Can this Pacemaker-for-the-Brain switch off Chronic Pain..?

"You can’t imagine the impact Chronic Pain has until it happens to you." - Kevin Baker, recent Deep Brain Stimulation success story.

When one suffers from severe, debilitating, and widespread Chronic Pain - in addition to the fun-time (!) physical elements - there’s also an internal, unrelenting, and incredibly exhausting war being waged emotionally.

As is to be expected, this is between the negative and the positive. Ultimately, negativity comes to represent Chronic Pain, with positivity representing the hope/faith that something will bring a cure, or at the very best - relief.

And so! With that said - if relief and a cure are both positive, shouldn’t I be in line for my ’Brain Pacemaker’ as we speak? Hmm…

Well, I hate to bring up the brain-scrambling lobotomies of yesteryear… but does anyone remember the brain-scrambling lobotomies of yesteryear? Call me a bit paranoid, however I’m not all that positive when it comes to someone burning away little bits of my brain they deem to no longer function correctly.

WHAT DO YOU THINK??? WOULD LOVE TO HEAR! 

  • Write in the Disqus Comments below!
  • Tweet! @theproject3x5
  • Email! theproject3x5@gmail.com

Another treatment for Parkinson’s: DBS
Deep brain stimulation (DBS) involves the implanting of electrodes in the brain that effectively “inactivate” a certain region.  It can be quite sophisticated, using multiple electrodes that can then have different patterns of stimulation.  There is a pacemaker that is implanted elsewhere in the body, usually where it can be removed to replace batteries and the like without too bad of side effects (so not in the brain tissue). 
In Parkinson’s, the electrodes are surgically implanted into the subthalamic nucleus (STN) or the internal segment of the globus pallidus (GPi).  For a refresher on the basal ganglia pathways, go here. STN excites GPi and GPi inhibits thalamus, both of which effectively decrease movements.  In Parkinson’s, patients are having trouble moving due to the decreased dopamine feeding into the basal ganglia loops.  Therefore, acting on STN or GPi and effectively inactivating those regions makes it so that movements will be easier.
It is also interesting to note that DBS can be used on other disorders, such as severe cases of obsessive-compulsive disorder (OCD) and Tourette’s Syndrome.  Tourette’s is characterised by motor and verbal tics that can be very intrusive, not what you usually see on TV (for instance, I know a patient whose uncontrollable tic is to poke their eye and they had blinded that eye with it).  DBS of the thalamus usually can be helpful for patients suffering from Tourette’s (I think you can figure out why it might be from what you know about the basal ganglia circuitry).
There are still more potential treatments for Parkinson’s that I will continue to discuss.
[Image Source]

Despite my immediate fear of the treatment, this was such an interesting article to have come across, and one that I suggest you sit down, digest, and explore further once you get the chance. I’m still quite eager to fully understand the difference between Deep Brain Stimulation (DBS) and Spinal Cord Stimulation (SCS) - anyone out there have any knowledge on this? 

DBS sounds pretty fascinating! Especially in terms of its helpfulness for larger areas of ‘Chronic Pain’ through a greater focus on the “emotional unpleasantness” of the pain experience. That’s brilliant! As positive as I am on TheProject3x5, things are tough! It resonated so loudly with me when Mr. Baker said things such as…

"It was the pain that ground me down bit by bit"

And…

"It hurt so much I could barely sleep"

Or…

"I’d always been an avid reader but I could no longer read a novel because I couldn’t concentrate… And I haven’t enjoyed a holiday since it happened. What’s the point if you won’t enjoy it?"

Sounds scary, yet maybe not one to write off just yet?

- Loads of love! You always have my support despite your situation or treatment! Dan xx


19

Mar

REAL TIME UPDATE!!! 
I am on top of Kansas. The whole thing. Yes, all at once.
To clarify: I’m in a plane. To clarify further: I don’t think the map I see is to scale.
Do you live there? Look up at the sky quickly and you might catch a glimpse of that dreadfully enthusiastic face pictured above (yikes!), staring down on you as I make my to New York City.
I am beyond excited! As evidenced by the super cool thumbs up. As a HUGE fan of the original ‘The Wizard of Oz’ movie starring Judy Garland as ‘Dorothy’, I’m excited to be flying over Kansas! And my tummy did a little flip as I came to a very wonderful - if not somewhat ironic based on my current location - realisation of the staggering truth behind…



“There’s no place like home.”



Flying over Kansas and thinking about the Wizard of Oz, brought to mind the above quote - from the movie of course! As a so called “3rd Culture Kid” - a person whose childhood was spent in many different countries - home has always been a confusing concept to me, yet this remains one of my favorite quotes of all time. As Dorothy’s words swirled in my mind, it sunk in that to be honest for the first time in a VERY long time - years, even - I feel settled and normal and very much me. To feel properly comfortable and confident within yourself? How much more “home” is it possible that one may get?
I can’t tell you what a fantastic feeling it is to know that “despite the odds” (ugh, I hate having to include that, but that’s the whole point, huh?) I am indeed still and perhaps much more - actually, definitely much more! - strong and independent. Enough so to get through a situation on my own, despite the fact that yes, something happened to me and for a while there I needed a lot of help. Despite the fact that yes, I may still sometimes need help! (Whatever. Who doesn’t?) To know that should something go wrong in the hustle and bustle of the long-forbidden “Real World” - a world of sharp objects (!) and ignorant, hurried masses (!) - all it really takes is a deep breath and my own clear thinking and confidence to solve the problem.
Don’t get me wrong for a single second. I have appreciated every bit of every caregiver’s love, support, and assistance. I’m not casting them off! In fact I feel I’m doing quite the opposite. I want to say that if it weren’t for my Mother, Father, and Sister standing up for me and acting as my ‘shaky bits’ when I quite couldn’t… I think I would have forgotten how to not be quite so shaky on my own. When I needed to solely focus on the physical, or found it necessary to hide my recent-past for fear the devastation of its loss would keep me from the seemingly impossible task of remission and pain; the 3 of you became an impenatrable safe, full of pure love for me - without which I would have lost myself in the trauma of this all.
Thanks guys. I love you very much. xxxx

REAL TIME UPDATE!!!

I am on top of Kansas. The whole thing. Yes, all at once.

To clarify: I’m in a plane. To clarify further: I don’t think the map I see is to scale.

Do you live there? Look up at the sky quickly and you might catch a glimpse of that dreadfully enthusiastic face pictured above (yikes!), staring down on you as I make my to New York City.

I am beyond excited! As evidenced by the super cool thumbs up. As a HUGE fan of the original ‘The Wizard of Oz’ movie starring Judy Garland as ‘Dorothy’, I’m excited to be flying over Kansas! And my tummy did a little flip as I came to a very wonderful - if not somewhat ironic based on my current location - realisation of the staggering truth behind…

“There’s no place like home.”

Flying over Kansas and thinking about the Wizard of Oz, brought to mind the above quote - from the movie of course! As a so called “3rd Culture Kid” - a person whose childhood was spent in many different countries - home has always been a confusing concept to me, yet this remains one of my favorite quotes of all time. As Dorothy’s words swirled in my mind, it sunk in that to be honest for the first time in a VERY long time - years, even - I feel settled and normal and very much me. To feel properly comfortable and confident within yourself? How much more “home” is it possible that one may get?

I can’t tell you what a fantastic feeling it is to know that “despite the odds” (ugh, I hate having to include that, but that’s the whole point, huh?) I am indeed still and perhaps much more - actually, definitely much more! - strong and independent. Enough so to get through a situation on my own, despite the fact that yes, something happened to me and for a while there I needed a lot of help. Despite the fact that yes, I may still sometimes need help! (Whatever. Who doesn’t?) To know that should something go wrong in the hustle and bustle of the long-forbidden “Real World” - a world of sharp objects (!) and ignorant, hurried masses (!) - all it really takes is a deep breath and my own clear thinking and confidence to solve the problem.

Don’t get me wrong for a single second. I have appreciated every bit of every caregiver’s love, support, and assistance. I’m not casting them off! In fact I feel I’m doing quite the opposite. I want to say that if it weren’t for my Mother, Father, and Sister standing up for me and acting as my ‘shaky bits’ when I quite couldn’t… I think I would have forgotten how to not be quite so shaky on my own. When I needed to solely focus on the physical, or found it necessary to hide my recent-past for fear the devastation of its loss would keep me from the seemingly impossible task of remission and pain; the 3 of you became an impenatrable safe, full of pure love for me - without which I would have lost myself in the trauma of this all.

Thanks guys. I love you very much. xxxx