Khronicure

"How not to say the wrong thing..." Someone you know ill? Watch what you say and to whom.

Tue, 09 Apr 2013 19:17:46 -0400

"How not to say the wrong thing..." Someone you know ill? Watch what you say and to whom.:

Yikes! And there it is… that horrible, despicable, intensely cringeworthy moment. Uncle Merv has once again decided to explain the ins and outs of his knee surgery - performed 20 years ago, mind you - while the current patient sits silently, gritting her teeth in a combination of severe agony and angst. The patient’s thumb pounds the powerful red morphine button just a second too late; And as she softly drifts off, her relief is all-too-often interrupted by the words of recent AA convert Aunt Maggie warning of the dangers that modern medicine will most definitely bring.

Let’s get this straight…

Someone you know ill? Watch what you say. Watch where you say it. Watch to whom. Watch when.

Furthermore…

A slipped disk does not even remotely compare to Lupus. Nope.

Child birth does not compare to CRPS/RSD. Nice try. Wanna trade?

A double hip replacement is in no way, shape, or form the same as a Mastectomy.

NO! NO! NO!

Last but not least…

Shhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!

If the patient wants to talk, you don’t get to. No ifs, ands, or buts on that one. If the patient wants to cry, you get tissues. No ifs, ands, or buts on that one. You see where I’m going? The LA Times really got this. They even drew a diagram. It’s amazing and you should read the article. Ok? Click on the headline.

Ps: Ice cream. Always. And tea. Cups & cups.

(Trust! I am small, but I am wise.) xx

**It should be noted though, that while I agree with the LA Times on their analysis of how annoying it is for totally ridiculous medical conditions to be compared (Not a joke: I’ve had far too many randoms approach me at the grocery store to tell me about their golf injuries for it to be ok anymore…) I don’t 100% agree with their ‘ring theory’.

Why not? I find that one of the most balancing things for me has been my amazing friends and followers coming to me with their problems. Dump IN, Comfort IN and OUT… per say. It makes me feel real. Like a proper person capable of handling things. Besides, is that not my job?! To make people feel better in some small way? If I can’t do that then what’s left?*

#Crps #Rsd #Pain #Faith #Spoonies #Strength

Why Does Sugar Make My Pain Worse?

Tue, 09 Apr 2013 19:14:49 -0400

Why Does Sugar Make My Pain Worse?:

i-need-that-seat:

There’s only one thing that makes me happier than candy and cookies, and that’s Disneyland, so naturally I was pretty upset when boyfriend sent me this article today.

What do you guys think?

#Rsd #Crps #Pain #Faith #Diet #Pain

#CRPS #RSD #PAIN #FAITH #Spooniea

Tue, 09 Apr 2013 19:01:49 -0400

#CRPS #RSD #PAIN #FAITH #Spooniea

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

Wed, 27 Mar 2013 13:19:55 -0400

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

project3x5:

“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

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

#Chronic Pain #CRPS #RSD #Parent
#Cure # Faith #Brain #Invisible Illness

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Mon, 18 Mar 2013 18:40:20 -0400

In the Midst of All this Madness: Alienated

Mon, 18 Mar 2013 13:03:09 -0400

In the Midst of All this Madness: Alienated:

project3x5:

When one thinks ‘Chronic Pain’, the emotions that immediately jump to mind are most likely already looking for ways to lurk and seep their way back to the slimy and grimy most beaten up of recesses deep within one’s psyche. They aren’t exactly rainbows and butterflies!

The physical feeling of Chronic Pain sinks like an anchor, that may drag the best of us down to the bottomless pit of anger, fury, self-pity, and endless doubt. Shameless and greedy however, this Chronic Physical Pain begins to grow stronger in time - and no longer merely satisfied with the ‘unsophisticated emotions’ it has already royally made a mess of, it couples up with an emotional pain that may at times seem almost unforgiving.

That’s right… I’m talking about the all-consuming emotional pain of loneliness, disconnection, and alienation. As though sinking in a quicksand pit of these emotions, you have no choice but to surrender yourself one back, shoulder, knee, limb, digit, etc. at a time. There are so many names for it, but alienation by any other word still sucks - especially in the midsts of its absolutely nutty, relentless, overwhelming, unwanted, and mad companion - pain.

The written piece in the link above (and shown partially below the picture) is called “In the Midst of All this Madness: Alienated” and was written by the fantastic and brilliant Megan over on her blog “In the Midst of All this Madness”. She’s a brilliant writer and pretty spot on at capturing the emotions that we (or at least, I, and based on your emails many of y’all most likely) feel on particular things.

DEFINITELY READ ON!

(One Last TheProject3x5 Thing! Sharing this picture of me at my most alienated has made me feel much better. It’s like an emotional weight lifted off my already far-too-heavy shoulders, and I’m thankful to all of y’all for helping me get to this point! Share yours along with me (EVERYONE welcome! The more the merrier. No illness necessary.) as we give each other strength and possibly courage to those starting their recent journey. There’s no need to hold all the stress of that moment to yourself anymore.

Email it!- theproject3x5@gmail.com

Tweet it! - @theproject3x5

Comment it! - Press Short URL, then look below the piece!

Can’t wait to for the inspiration to start flooding in. Will keep it confidential if that’s what you’d prefer :)

A little backstory on my moment?

Having just lost a very dear friend as a Ranger in Afghanistan, I immediately flew from his funeral to Chicago for a first heavy dose of Ketamine in search of relief. It’s impossible to describe what you undergo and feel during such a treatment. Especially when you’re given such a heavy dose with a mind that’s littered with devastation. I had been warned to go in with a “clear, stress free mind”. Now I understand why! Upon completion, I received a phone call to say that another dear friend had passed away in a diving accident. In her writing below (or if you click on the link above!), Megan refers to this as, “stuck in a moment of time.” I’m quite possibly still stuck! I say it all the time. Anyway, in an effort to lift my spirits and normalize me somewhat… my mother shook the shock from me and up to the bustling top of the famous Sears Tower we went. An invisible ledge only seemed suiting for someone with an Invisible Illness. And so, here I am, feeling as though it’s me against the world. Cryogenically frozen somewhere over the streets of Chicago. I may be bundled up in a cloak of confusion, yet as always… I’m wearing my suit of armor. xx

inthemidstofallthismadness:

I feel odd. I refer to the feeling as disconnected, but even still, I am not sure exactly what it is that I feel. This pain becomes so alienating. So long as the pain is at a manageable level I can feel human, I can draw a connection with others. But as my discomfort climbs higher, and higher, I…

#chronic pain # CRPS #cure RSD #Friends #Spoonies

project3x5: Spooning with Alton… (via The Spoon Theory Facebook...

Mon, 11 Mar 2013 00:11:36 -0400

project3x5:

Spooning with Alton…

(via The Spoon Theory Facebook Page)

CRPS,#RSD,#pain #Spoonies, #CURE

project3x5: It’s Rare Disease Day today! Want to learn more...

Thu, 28 Feb 2013 17:57:25 -0500

project3x5:

It’s Rare Disease Day today!

Want to learn more about it? The short video above is a brilliant start!

Of course, there’s also loads of info up on the official website (www.rarediseaseday.org). There, among other things, you’ll find news, fundraisers - like the oh-so-simple! one still happening right here on TheProject3x5 - and last but not least all sorts of activities that will allow you to interact on a global scale with others in a similar situation.

The slogan this year for the 6th annual Rare Disease Day is “Rare Disorders without Borders” emphasizing the need for international cooperation. Well, it just so happens that one of the things I’m most proud of about TheProject3x5 is how far-reaching and global my readership is. So everyone get involved! Go to the official website and go beyond your border for your rare disorder! Let’s demonstrate global solidarity and show them what we’re about.

You guys are the best! Thank you so much for your strength and the inspiration that you provide for me every single day. Lots and lots of love. - Danielle xx

#Rare disease Day #CRPS # pain #cure #awareness

crpspaindrops: Orange for #crps awareness on...

Thu, 28 Feb 2013 10:46:39 -0500

crpspaindrops:

Orange for #crps awareness on #rarediseaseday

#CRPS #RSD #cure #PAIN#Rare Disease Day#Chronic pain #Faith

Project3x5: To-do: Appreciate.

Wed, 27 Feb 2013 09:55:55 -0500

Project3x5: To-do: Appreciate.:

project3x5:

My to-do lists have recently each seemed as long as me. Ay! Overwhelming. You know the type, I’m sure! At first glance each list leaves me longing to simply curl up in a ball, house cat style, to just ignore all tasks completely. Sort of an: If I can’t see them, they can’t see me type of thing….

melissaj05: No-one chooses a life with chronic pain. Please be...

Fri, 22 Feb 2013 00:15:07 -0500

melissaj05:

No-one chooses a life with chronic pain. Please be patient… #chronicpain #exhausting #crps #rsd #scs #invisibleillness

CRPS, #rsd, #pain #chronic pain, #faith,

melissaj05: Got my AdaptiveStim turned on a couple of days ago...

Thu, 14 Feb 2013 22:56:15 -0500

melissaj05:

Got my AdaptiveStim turned on a couple of days ago & I absolutely Love it. No more reaching for my remote 20 times a day. 👏 #scs #spinalcordstimulator #crps #rsd #medtronic #technology #adaptivestim

Project3x5: On Strength, Speaking too Soon, & The Art of Things Going Spectacularly Right.

Tue, 22 Jan 2013 12:25:38 -0500

Project3x5: On Strength, Speaking too Soon, & The Art of Things Going Spectacularly Right.:

project3x5:

On TheProject3x5 all things are possible! So, let’s go back in time..! All the way to last week and the short post on my perfection of staying in bed. Remember it? I know, I know… I’m asking a lot after what was most likely a busy week filled with pain, stress, treatments, etc. But it’s…

Positivity @TheProject3x5

Project3x5: The countdown is officially on! Rare Disease Day 2013 is just around the corner! Ready..?

Wed, 16 Jan 2013 13:08:52 -0500

Project3x5: The countdown is officially on! Rare Disease Day 2013 is just around the corner! Ready..?:

project3x5:

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…

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Wed, 16 Jan 2013 12:59:47 -0500

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Wed, 16 Jan 2013 12:55:16 -0500

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Wed, 05 Dec 2012 19:45:08 -0500

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Tue, 27 Nov 2012 02:27:00 -0500

project3x5: For unwitting and stubborn young teenagers who...

Mon, 26 Nov 2012 10:32:48 -0500

project3x5:

For unwitting and stubborn young teenagers who obviously (duh) know everything about the world and all that it has to offer, it’s amazing how efficiently the human body has evolved into somehow finding a way to shut adolescent earlobes when a “crazy” uncle, “annoying” parent, or “stupid” teacher begins to speak about the fact that it actually sort of, kind of takes a lot of hard work to become a success.

What I mean to say is - that in today’s era of reality tv and seemingly never-ending quickie make-me-a-star competition shows, the magic of smoke and mirrors, along with a little strategic lighting, tend to make dreams look as though they’ve come extremely easily.

Of course I’m generalizing (and of course there are amazing television shows with crazy talent…) but does no one else yearn for the days of, “I came to America with 2 dollars in my pocket, and look at me now…” success stories, over the cackling Kardashians? (Or the kackling Kardashians, rather.)

We’d all be far more inspired, no?

I realize this has all been tv-talk, but it doesn’t stop there. Not everyone is headed to Hollywood, of course! However, this crazy idea of achieving one’s absolute ultimate goal easily in 6 months or so, continues to pop up within society today. It’s the trickle down effect at it’s absolute finest!

And so, the quote pictured above, “Dreams don’t work unless you do,” perfectly represents the “old-school” mentality - if you will (!) - that I believe we should be striving to return to if we want our inspired society back. How symbolic that it should be painted on stairs! I love that! Dreams are indeed an uphill climb, which only works to make them so much more satisfying once attained.

And that’s the point!

So, get out there and be passionate about something.

Make your dreams come true!

Be well & pain free! Loads of love, Danielle xx

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Mon, 26 Nov 2012 02:20:29 -0500