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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

19

Apr

I was having a very rough week earlier pain-wise. 
**As you know, I have CRPS/RSD in my back already and so the incision site was extraordinarily painful when they inserted this Spinal Cord Stimulator (SCS). It’s why you haven’t heard from me properly in a while (in terms of how the procedure actually went). I’m so, so sorry!**
Anyway - I’m totally off track already. Where was I? … Oh yes… 
I was having a very rough week earlier pain-wise. For other sufferers of chronic pain, you’ll understand that once you’ve been in pain for a certain period of time, it starts to get to you. I mean, I’d say it gets under your skin, but what’s the point of that… It’s already under there, right? What with those nerves and stuff? (worst. joke. ever.) 
Anyway, you know what I really meant. I meant that: You get cranky. You get emotional. You get moody. You get irritable. You get impatient. You get anxious. You get depressed. You get exhausted. You get disheartened. Need I say more? I’m sure you can see where this is going. 
——————————————————————————————————————
But I can’t live like that all the time. Especially with all the love I’m surrounded by.
From my Mother, Father, Sister. The folks of #19 (I lived with them through university). Josh & his family. All my cousins & my extended family. What feels like the entirety of Trinidad (shout out to Auntie Carol’s PR machine!). My friends from all the places I’ve been fortunate enough to live with all over the World. My medical team. My new Tumblr friends. Will Smith (I still can’t believe that one either). Random strangers online who hear my story and then become part of my support system. There has not been one negative online comment, tweet, or email. That’s love. That’s support. That was reason enough for me to change my course from where it’s was heading earlier this week… 
It sounds and seems like such a cliché but we genuinely DO have the power to change our feelings and our lives. To go from negative to positive no matter how sick we feel and how desperate or dire the situation may seem.

Deepak Chopra said, “95% of illness is either caused or worsened by stress. Take time every day to just be.”

So… today, I be’d. 
And then after that I felt inspired (I’m a bit hyper, just be-ing wasn’t enough) to read back through many of the amazing messages I’ve gotten over the last 2 years.
I chose messages at random. Some covered the accident. Some were Tumblr comments. Some Tumblr messages. Some Tumblr fanmail. Some from my best friends. Some from total strangers. Some from members of my family, no longer with us. Some from family-members who have since brought in new members of my family. It was a truly amazing and incredibly inspiring afternoon. In fact, those words don’t even cover it. 
And, so…
I wanted everyone who has ever sent me a message or who has ever thought of sending me a message or who has sent a good wish my way, or a prayer. Or a vibe. Or simply so much as spent a minute on this page to know how blessed you make me feel. You inspire me to wake up everyday and write this with the hope that maybe it might make someone who felt the way I felt earlier to smile. You remind me that I am loved. But most of all - your constant messages give me hope that one day when I get better, there will be people for me to play with. And that’s a huge thing! You remind me that I haven’t been forgotten. And for me, that means everything. 
(Top Image via Flickr/laineylamonto)

I was having a very rough week earlier pain-wise.

**As you know, I have CRPS/RSD in my back already and so the incision site was extraordinarily painful when they inserted this Spinal Cord Stimulator (SCS). It’s why you haven’t heard from me properly in a while (in terms of how the procedure actually went). I’m so, so sorry!**

Anyway - I’m totally off track already. Where was I? … Oh yes… 

I was having a very rough week earlier pain-wise. For other sufferers of chronic pain, you’ll understand that once you’ve been in pain for a certain period of time, it starts to get to you. I mean, I’d say it gets under your skin, but what’s the point of that… It’s already under there, right? What with those nerves and stuff? (worst. joke. ever.) 

Anyway, you know what I really meant. I meant that: You get cranky. You get emotional. You get moody. You get irritable. You get impatient. You get anxious. You get depressed. You get exhausted. You get disheartened. Need I say more? I’m sure you can see where this is going. 

——————————————————————————————————————

But I can’t live like that all the time. Especially with all the love I’m surrounded by.

From my Mother, Father, Sister. The folks of #19 (I lived with them through university). Josh & his family. All my cousins & my extended family. What feels like the entirety of Trinidad (shout out to Auntie Carol’s PR machine!). My friends from all the places I’ve been fortunate enough to live with all over the World. My medical team. My new Tumblr friends. Will Smith (I still can’t believe that one either). Random strangers online who hear my story and then become part of my support system. There has not been one negative online comment, tweet, or email. That’s love. That’s support. That was reason enough for me to change my course from where it’s was heading earlier this week… 

It sounds and seems like such a cliché but we genuinely DO have the power to change our feelings and our lives. To go from negative to positive no matter how sick we feel and how desperate or dire the situation may seem.

Deepak Chopra said, “95% of illness is either caused or worsened by stress. Take time every day to just be.”

So… today, I be’d. 

And then after that I felt inspired (I’m a bit hyper, just be-ing wasn’t enough) to read back through many of the amazing messages I’ve gotten over the last 2 years.

I chose messages at random. Some covered the accident. Some were Tumblr comments. Some Tumblr messages. Some Tumblr fanmail. Some from my best friends. Some from total strangers. Some from members of my family, no longer with us. Some from family-members who have since brought in new members of my family. It was a truly amazing and incredibly inspiring afternoon. In fact, those words don’t even cover it. 

And, so…

I wanted everyone who has ever sent me a message or who has ever thought of sending me a message or who has sent a good wish my way, or a prayer. Or a vibe. Or simply so much as spent a minute on this page to know how blessed you make me feel. You inspire me to wake up everyday and write this with the hope that maybe it might make someone who felt the way I felt earlier to smile. You remind me that I am loved. But most of all - your constant messages give me hope that one day when I get better, there will be people for me to play with. And that’s a huge thing! You remind me that I haven’t been forgotten. And for me, that means everything. 

(Top Image via Flickr/laineylamonto)

05

Apr

“Dōmo Arigatō, Mrs. Roboto!” : the Permanent Spinal Cord Stimulator (SCS) is Officially In! xx

Well, the permanent Spinal Cord Stimulator is officially in!

Between all the electrical leads going into my spine, and now having to be controlled by a remote for the rest of my life - I feel like a robot*.

Not surprisingly, due to the enormous pain in my spine, I’m still in the hospital, though hopefully I’ll be getting out sometime tomorrow. I figured that I’d be in pain though, so I’ve prewritten some random posts that’ll continue to pop up should I temporarily not be able to write. I’d never leave you guys high and dry! Keep checking in… x

I honestly cannot thank y’all enough for your amazingly supportive messages. Each and everyone of you have come to mean so much to me. I’ll be sure to update you properly once I’m able, and to write back to those of you who very kindly wrote in.

Loads of love,

Danielle xx

(image via Etsy)


*(Ps - The cheesy ‘Styx’ lyrics in this post’s title seemed perfectly fitted to my new robot persona. I know, I know… I’m well-aware that I’m a massive nerd for loving this song. My sister has had 25 years to drill it into me. But it’s TOO good!!! If you’ve never heard it, or if you’re a huge fan too click here to listen on YouTube. I don’t own the song nor did I upload it. xx)

03

Mar

As usual, y’all have completely overwhelmed me with your kindness, and I can’t even begin to thank you for your sweet get well wishes while I was gone. 
In return… here! This is a picture of my adorable Goddaughter Livi. I hope that she puts a big smile on your face the same way she does mine.
I can really only hope that one day I bring you a single fraction of the joy your messages brought to me. Hope you feel well today.
I love you! I love you! I love you! xx
RELATED POSTS:
- A Get Well Card from Will Smith (Whether He Knew it Or Not)
- ‘The Snuggler: Snuggle Me Back to Health’
- Sick of Being Sick: So I Decided to No Longer Be Sick

As usual, y’all have completely overwhelmed me with your kindness, and I can’t even begin to thank you for your sweet get well wishes while I was gone. 

In return… here! This is a picture of my adorable Goddaughter Livi. I hope that she puts a big smile on your face the same way she does mine.

I can really only hope that one day I bring you a single fraction of the joy your messages brought to me. Hope you feel well today.

I love you! I love you! I love you! xx

RELATED POSTS:

A Get Well Card from Will Smith (Whether He Knew it Or Not)

- ‘The Snuggler: Snuggle Me Back to Health’

- Sick of Being Sick: So I Decided to No Longer Be Sick

23

Feb

SUCCESS!!! The horrible decision made by insurance was overturned. Sooo… I’m getting a Spinal Cord Stimulator, Baby! YAY!

And so the show will go on after all! My goodness, it’s been a roller coaster of emotions over the past week or so hasn’t it? Wow! (If you’ve missed the drama click here to get caught up… and if you’re new click here to read the story of my original accident and CRPS/RSD journey).

Firstly, I want to thank you all so much for the heartfelt comments, messages, and emails that have been both supportive and in commiseration. I couldn’t have gotten through the last week or so without y’all. Also, thank you for your voices in general. It is wonderfully inspiring for me to meet so many people dealing on as many different levels and as incredibly well as you all do every single day. How dare I complain when you guys manage it so well and in many cases with so much more to complain about? It keeps me in check! Positivity breeds more positivity, and so I thank you from the bottom of my heart. :) 

Secondly, a massive thanks to my doctor (Dr. Timothy Lubenow at Rush in Chicago) and his team who managed to get the insurance decision overturned. Thank God! It was a long, rocky, and excruciatingly painful road to actually even find a doctor who was the right fit for me, but with extreme patience we got there in the end. Have you been down that road too?* There was the problem of doctors not believing me. The problem of them having no game-plan. The problem of them being very negative. The problem of them thinking that I’m in pain and should therefore also be very negative. The problem of them making me feel downright uncomfortable. The problem of them making me outright cry. The problem of zero treatment options. The problem of them gender stereotyping my pain. The problem of them not being very medically aggressive. The problem of them being waaay too medically aggressive. And so this list went on and on and on until finally I found someone that I’m confident and very pleased with. Anyway, THANK YOU! My SCS will go in on Feb. 28th and I could not be more excited. I feel incredibly positive about it all, riding high on your comments and messages. :)

On a more serious note, as Miss. Ally wrote in my comments, the best thing we can do is to NOT SHUT UP about the issue with insurance and chronic pain, especially CRPS/RSD. It is not fair and we do not deserve this. Everyone needs to know that this is a real issue. It’s unfair that those at the insurance company get to decide on our medical treatment instead of our doctors. PAIN IS REAL. OUR PAIN IS REAL. Awareness is key and I truly believe that we should use all of our resources to get the word out there. Retweet all links to every article! Put it on your Facebook! Tell your friends! Post stuff on your blog! Insurance is less likely to mess with a disease that is more of a ‘contender’, so through increased awareness let’s get ourselves in the ring. Funding for research may also make a difference. Perhaps with increased funding, chronic pain and CRPS/RSD will become more of a big-time player in the world of insurance. Of course, this will eventually come through increased awareness, but… if you’re willing and able - please click here to donate through the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). It is SO appreciated!!!

I’m off to celebrate! 

Lots of love,

Danielle xx

*If you’re currently looking for a doctor and are on the above frustrating road that I spoke of, I feel for you very much and wish that I could hold your hand. In fact, I’d be pleased to if you suffer with CRPS/RSD - feel free to email me for friendly and unprofessional, yet hopefully helpful advice: theproject3x5@gmail.com. 

(image via addictedtoescape)

RELATED POSTS:

- Insurance !@#$% Rant

- My Story (as guest blogged to Ramshackle Glam)

- Each Time is the Worst, then it Gets Worse

- This is Not the Life I Ordered