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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

25

Feb

Raise Your Hand for Rare Diseases!

Oops! I have no idea why the following picture has decided to be the most hideous stretched out thing in the world? But in honor of Rare Disease Day falling this week please “Raise Your Hand” to support those affected by a rare disease (CRPS/RSD included!) simply by clicking below. Even better! - for every click, Lundbeck will make a $1.00 donation to support rare disease research through the National Organization for Rare Disorders (NORD). YAY! 

Click Away! Then tell some people about it and have them click some more! xx

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24

Jan

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When the following card arrived, along with a package, all the way from Azerbaijan in the post - I was blown away that reader Leisa had taken the time to think of me. The card did indeed make me smile! It was such a genuine gesture, and so incredibly thoughtful that she’d taken such lengths to find ORANGE in honor of Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy awareness

Just that simple thought alone would have been more than enough for me! In fact, a simple comment, email or tweet does wonders for my spirit (and for those pesky wrinkle lines being created by all the smiles y’all bring!) So, when I opened Leisa’s package, I was floored…

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“Thought you might like it,” may be the understatement of the century! I LOVE it. How unexpected and again, so incredibly thoughtful!

I’ve called it before, but I think it’s safe to now say it’s official: TheProject3x5 has the best readers in the world :) Thank you so much, Leisa!!! And love to everyone else who reads me, thinks about me, prays for me, writes to me - anything. It never goes unnoticed.

All my love, Danielle xx

08

Jan

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.) 

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.) 

19

Dec

A Pair of Happy Feet go to the Beach…
Sista, Sista! Proving that four Happy Feet are better than two… 
(I would apologize for my CRPS/RSD skeletor-looking foot on the left but I’m not going to. Nope. No way!!! That discolored and scarred little left foot was put together with so much love and care - it’s my pride and joy. Now, as for the bony right foot with the funny toes… well that’s genetics. And who wouldn’t want a walking reminder of their loving, supportive family to look down on at all times?) xx

A Pair of Happy Feet go to the Beach…

Sista, Sista! Proving that four Happy Feet are better than two… 

(I would apologize for my CRPS/RSD skeletor-looking foot on the left but I’m not going to. Nope. No way!!! That discolored and scarred little left foot was put together with so much love and care - it’s my pride and joy. Now, as for the bony right foot with the funny toes… well that’s genetics. And who wouldn’t want a walking reminder of their loving, supportive family to look down on at all times?) xx

16

Dec

‘Cause Baby It’s Cold Outside.

Pain, we get it - you’re a beast. You’re stuck in the dark days of adolescence and you’re not going to stop wreaking havoc until you get what you want. Which is… ??? Wait, what is it exactly?!?

If I had the answer to that, I’d be a very rich woman. I do however, know what pain does not want. Pain does not want to be cold.

Pain could care less that winters look much better in white. Pain doesn’t care much for the ski trip you booked way back when. And pain could really, really care less for the fact that you look fantastic in [faux] fur.

Yet, year after year…. winter rolls on - and baby it’s cold outside.

Let’s warm it up a bit shall we? xx

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(Pics via myself mostly. With a few Pinterest thrown in for good measure…) 

30

Nov

Album Art
149 plays

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… 

Danielle xx

02

Nov

It’s Late Friday Night… 
I’m catching up on some much needed work to stay on top of things for this “NERVEember” (encompassing International CRPS/RSD Month (it’s here!!! it’s here!!!), US Diabetes Month, & awareness for all illnesses that include neuropathic pain)
I hope you’re out having extra fun on my behalf!
Either way… if you’re awake and reading this as it’s posted — I think you, me, and Ms. Dorothy are all in the same boat. xx 

It’s Late Friday Night… 

I’m catching up on some much needed work to stay on top of things for this “NERVEember” (encompassing International CRPS/RSD Month (it’s here!!! it’s here!!!), US Diabetes Month, & awareness for all illnesses that include neuropathic pain)

I hope you’re out having extra fun on my behalf!

Either way… if you’re awake and reading this as it’s posted — I think you, me, and Ms. Dorothy are all in the same boat. xx 


(Source: kutmaztahk)

04

Oct

Ketamine Kinda Week…

It’s been a Ketamine-Infusion kind of week…

I’m going for 10 days this round, though thankfully I get a 2 day break for the weekend. So far I’ve completed 4 days, going into 5 tomorrow. Tough, to say the least! Especially after my really rough experience the last time.

I am so confident, however, that with all your thoughts & prayers - plus my faith, the competence of my medical team, and the support system surrounding me here in Chicago I not only will be ok - I have no choice but to be.

I’ll check back in with you as soon as I can!

All of my love. - Danielle xx