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21
Apr
Happy Birthday to:
The Best-Nurse Ever. The Best-Friend Ever. The Best Cheer’r-Upper Ever. The Best Support-System Ever. The Best Advice-Giver Ever. The Best at Inducing-Nausea-Related-Posts Ever (oh, whatever)…
And most importantly - HAPPY BIRTHDAY to the best Mummy in the Whole World!
No idea what I’d do without you.
Love. Love. Love. 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.
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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
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)
28
Mar
Someone clearly doesn’t have sensitive CRPS/RSD feet.
Tough enough soles/soul for the both of us :)
Ahh! I know, I know! I’ve promised this post for so long - how does one deal with love when facing a chronic illness or chronic pain? My belief is that (when possible) it’s tied to the very start of the relationship…
Josh and I met somewhat randomly at the very beginning of my diagnosed fight with CRPS/RSD. It was also (ironically) at the very start of a time in my life where I was in the mindset of, “I don’t think I could handle the start of a relationship at the moment”. But I liked him, so I tried something new - I was bluntly honest on the first night that we met saying, “If you’re going to play games with me, I don’t have time. I have something much bigger to deal with”.
As soon as it slipped out of my mouth it shocked even myself. His face had seemed so kind, warm and lovely to me from the second I saw it. Not to mention the fact that coming from a place as small as Trinidad (where everyone knows everyone), I’d only heard fantastic things about him. It’s not to say I’d heard he was a serial womanizer and I felt that I needed to put him in his place. Nope! Yet I said it and I’ve never, ever regretted it. Here’s why…
When struggling with a serious chronic illness, it is important to remain in touch with the daily ups and downs of life so as not to become a one trick pony - blinded by your disease. However, we must pick our battles very carefully. The games played by men and women at the beginning of a relationship are beyond stressful, even for those who are not sick - no? I was not about to dance that tango while learning how to walk. I’d have been an ungraceful buffoon, stumbling through the steps, more and more emotional at each misstep along the way. At that point, all I needed was positivity, and so I did something simple… I asked for it. Two weeks later, we were inseparable - he said he loved me, I said it right back.
From this experience, I’ve learned that you should never be afraid to ask for something that you think will help and is the right thing for you. As cliché as it may be, communication is key. It’s empowering. It’s healthy. It may even lead to love. Ask, and if the person responds with the wrong answer, well, they aren’t the right person for you anyway. Life is too short to hang around waiting for the right thing to appear. Sure, some games are fun, but life is too short for the ones that go no where. Choose wisely. Use your head. Have a balance and find your partner. There’s no lasting love in having someone you’re not completely comfortable with. This person is ultimately to be one of closest and most important people in your life! I understand that you may feel jittery, but why should you feel worried/scared to call or text them?
Put this in perspective and if such is the case - you have a problem.
Every strong home needs a well built foundation. Speak up from the start in a kind, yet firm way, and you can never be accused of saying that you didn’t put it out there to save your time. Games are for players, and nobody likes those.
If all else fails, I’ll love you forever :)
Have a great day!
Danielle x
(image via google)
22
Mar
Not to sound like an overly poetic goon, but yesterday, all my troubles really did seem incredibly, incredibly far away.
On the sunny beaches of Tobago - far from the cold, sterilized hospital rooms of Chicago - here’s what there was:
I know, right?!
Poor Josh is more of a do-er than a sit-er, but we found something for him to do with the job as official hat stand.
So happy with my new underwater camera!
And with being close to Mr. Josh, my boy.
(Read more after the jump…)
17
Mar
Dr. Bella to the Rescue…
Oh, man! These travels to make me well (Chicago/ Trinidad) are going to be so worth it, but I am missing my puppies like you wouldn’t believe!
I’ve written here before about the health benefits of dog ownership, and I hope that this photo will be a testament to what I’d written. It just never ceases to amaze me how intuitive they are health wise! And while I’d like to think that perhaps my little one is a cut above the rest (don’t all parents?), having owned many, personally I give credit to them all.
I know that you can clearly see my swollen-red-tomato-face from crying due to pain, but hand-on-my-heart, Bella had climbed up on my lap and sorted her little paws around my left leg at the first sign of extra CRPS/RSD flare-up discoloration (still slightly noticeable in the picture), but before the first tear. Then came the kisses…
Was her tiny weight painful on my over-sensitive limb? Ohhh yes. But was her cuteness and unconditional love what got me through drowning in the unbearable darkness of torturous RSD pain? Absolutely.
And you know what? I’d rather take her ‘heavy’ weight over the heaviness of the moment any day…
(Ps- Are you jealous of my orange sweater? Not even going to pretend I don’t wear it all the time).
RELATED LINKS:
- Because Today We Don’t Feel Like Doing Anything
14
Feb
Oh, Chronic Curve! You’ve stolen my heart and now my attention span with this absolute must-read.
Unfortunately, I’m reblogging this quite late on Valentine’s Day, however that shouldn’t be a problem at all considering that it preaches a lesson we should all work to hold close to us no matter the time, place, or season.
If you do one thing today, read this! Enjoy :) x
I don’t care much about Valentine’s day. It makes no difference to me whether or not I’m in a relationship with another person when the 14th rolls around because no matter who I am with, where I am, what day it is, or what I’m doing, the most important relationship I have is with myself.
Ps: However, if you are hating Valentine’s Day… try this.
Haven’t you ever wondered where Josh came from? Hey, if it worked for me, right?!* x
*Disclaimer - don’t kiss a frog. I’m lying.
via chroniccurve