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08

Mar

You're Invited!!! - RSDSA's biggest & best CRPS/RSD study ever...

If you suffer from Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) and want your answer to Monday’s inevitable line of, ”What did you do this weekend?” questioning to be:

"Oh, me?… I only became a part of the biggest and best CRPS/RSD study ever sanctioned by RSDSA in the whole history of ever."

(And you should want that answer! You should want it very much!)

Then follow my lead, you guys!

Click on the top headline to take part in an Internet-based study through the renowned Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), whereby sharing your experience with CRPS/RSD will finally allow some sorely needed, much lagging research to be kicked into high gear. 

Anyone with a diagnosis of either CRPS I or CRPS II is welcome to join, and participants will not need to submit any medical records in order to register for the study. Participation is totally voluntary and you’re more than welcome to withdraw at anytime. Simple, I know!!! It’s absolutely brilliant!

It all sounds a bit too good to be true, doesn’t it? Is there a catch?! Are they going to lobotomize you once you’ve signed up? NOPE! I repeat, NO. The study remains easy and totally pain-free (hmm, well, I suppose not actually literally pain-free due to the fact that you suffer from Chronic Pain…) 

So what’s your role? As a long-term study participant you will be asked each year to repeat a series of questions on your health, your healthcare, any treatments undertaken, and how the CRPS/RSD has affected your health and wellbeing since the last time. Ta-dah! Easy as pie!

Need more details? Go ahead and click here to read all about it!

To register, click here or on the headline above. 

Can’t wait to see how many of you are excited about this study as well? Let me know! And let’s tweet it on! I’m @theproject3x5

Happy Surveying! 

How are you feeling?!? Have a wonderful Friday! - Danielle xx

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

08

Nov

Another blog break for a Ketamine Booster! Be back soon to tell you all about my very orange birthday at ‘Dancing with the Stars’ & to launch the ORANGE INITIATIVE with your amaaazing pictures for CRPS/RSD Awareness from all over the world! Keep sending them in!!! xx

25

Sep

Reality Bites…

I’ve been missing, I know! There’s very little that’s more frustrating to me than to leave you guys hanging. Even if just for a few days. Grr… 

While I’d love to do nothing more than have this blog be sunshine and rainbows all day long, all the time - unfortunately that’s not the reality of this disease. So… I’ll be honest. The plateau turned into a horrible flare. A whole lot of this face (which I now predict will haunt me forever) has been happening…

How pretty am I? Stunning, no? Ha! Reality bites.

(In all seriousness though… I love my family for lightening the mood by taking a picture while this face was happening. The best.

So what does all of this mean? It means another ketamine infusion. And so, I’m off to Chicago tomorrow. Wish me luck! Send me hope! Pray!

All my love, 

- Danielle xx

10

Sep

Hi! From Ojai.

Hurray! I woke up on Sunday morning feeling as though the massive weight bearing down on me (yup, that one…) had been lifted. Instead, replaced with a fantastic amount of energy and positivity.

So what’s a girl to do when, once again, given a whole new lease on life? Well, go to the Ojai, California Farmer’s Market, of course! 

I’ve spoken before about a benefit to currently living in California being the close proximity to all of the gorgeous sites & sounds. Whale watching on one side! Yosemite on the other! Even Las Vegas or Napa aren’t too distant.

Ojai, however - a charming and artsy, western-style farming town close to Santa Barbara - might be at the top of my list…

It’s a bit of a drive, but for the slower pace, unique art galleries, pure atmosphere, and delicious food waiting at the end - any drive would be so worth it! 

Of course, there were your typical market stands with fruits, veggies, and the best in homemade olive oils, soaps, cheeses, etc. But then, well… then, there was this guy… 

A stroke of genius, no? You can clearly see I was a little bit skeptical at first, but never one to say no to something that might potentially be really positive… 

… I went ahead and cashed in. And my review? Actually, there was not a drop of creepiness in sight! Just pure joy all around.

Thought about y’all these last few days. Hope you had a great, pain free weekend.

What did you get up to? - Danielle xx

07

Sep

Oooh! The Miserable, Awful, and often Inevitable Mid-Program Plateau

Grrr! It is so frustrating to have to write this post after having put in an incredible amount of extraordinarily painful work. However, as much as I despise feeling and having to admit this - we’re bang! smack! in the middle of my intense 6-week Physical Therapy program and (as happens over the course of many planned out exercise programs) it appears I’ve hit the dreaded plateau. Of course, in my case I’m exercising in an attempt to try and ease my Chronic Pain caused by Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy (CRPS/RSD) into remission, not to lose weight. Yet, a plateau is a plateau is a plateau, and after lots of hard work, it’s more than slightly bloody frustrating, to say the least.

Although nerve pain always hung around, wreaking havoc from my toes to my ears - there did indeed exist a productive, spectacular, almost magical time about a week after my body had (in it’s own little way) warmed up and adjusted to the program. Rapid leaps and bounds of success were made! Meaning that: miles-and-a-bit were walked! Reps were increased! I mean, I don’t want to show off or anything… but light weights were even used on more than one occasion. Seriously, did you just read that last sentence? Read it again. Go on! I’ll wait. I know, right!?! I mean, pass me a cape and call me Superwoman. 

The Plateau…  

I’m sure you’ll understand my frustration then that the pain has now gone from extreme-but-understandable to extreme-but-whacko. CRPS/RSD is such a random little devil! One minute under control, the next minute out - and as far as my pain management team and I can tell, triggered by nothing. I was doing so well and now my pain is off the charts. Horrific. It’s a modern-day independent woman, and Honey, ain’t nothin’ holding her back.

I’ve had to unfortunately schedule another 3-day Ketamine Infusion when I go to my doctor in Chicago in 3 weeks time. I’m (as always) beyond nervous about the ketamine, but (as always) giving positive visualization and meditation my best go. Of course, prayers always help very much as well, and I always appreciate help in this department! 

So, how can I stay positive to get past this stage?

Of course, I’m sure you’ll remember (if not, click here) that ultimately it is so, so, so CRUCIAL that even in the most painful of my ‘plateau’ moments I still have to keep going with my physical therapy program. After all, the whole point of it is to reset my sympathetic nervous system, teaching it that responding to activity with extreme pain is the wrong reaction. 

I feel tremendous pain. There’s no fooling anyone - it is TOUGH to keep on going! I’d like to take that above-mentioned Superwoman cape and curl right on up in it for a great big nap. It’s important to note that things aren’t just rough physically, but mentally also. Motivation is the key to physicality and it’s darn near impossible to find any when buried under a mountain of pain. Let’s face it, without the right thought process I could easily be on a one-way road to Negativeville and a word I previously thought I’d never even begin to think of using - ‘quitting’. 

So, where does the inspiration and positivity to keep going come from..?

Well, as I said early on in the program, I sincerely do not want to be in pain anymore. I really do want to see if this works! This is to my benefit and to my benefit only - if I cheat or sell myself short, it’s only going to (literally!) hurt me. I know that most exercise programs have a plateau so it’s logical that this one would too, you know? Furthermore, I’m proud to say that so far, I’ve managed to put in the work and to do something everyday. As a(n almost stupidly) competitive person, this provides even more inspiration, as I don’t want to waste all of the work I’ve put in! Simple. The program calls for 6 weeks of work, not for 3 weeks. I’m halfway there and man, is it killing me! But at the end of it, at least I can say, “I tried that and it wasn’t for me”… or maybe (hopefully!) even, “That was my Golden Ticket! I recommend you try that too.”

Finally, I can’t stress enough how much y’all inspire me each and every single day!!! I LOVE hearing from you, especially at times like this! From absolutely incredible stories of healing, to a simple ‘hello’ from kind and thoughtful strangers not even suffering Chronic Pain - every connection makes my day and is sure to put a smile on my face :) Pain is an incredibly debilitating and often isolating ailment - messages make it much less so, while providing constant support. Get in touch! *Contact details may be found in the yellow box to your left under ‘Tweet & Email’. I read every single word. It may take a little extra time for me to get back to you around painful times, but I ultimately always do.

NOW TELL ME: HAVE YOU HAD A SIMILAR EXPERIENCE? WHETHER OR NOT YOU SUFFER FROM CHRONIC PAIN, WHERE DO YOU FIND THE STRENGTH & MOTIVATION TO GET OVER YOUR OWN PLATEAUS? 

Happy Friday! As always, be well and pain free!

Danielle xx

30

Aug

I agree, Max. Time for a break. x
RELATED POSTS:
- Hey! Did You Get Me A Christmas Present? 
- Dr. Bella to the Rescue!
- Have You Met My Babies? 
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I agree, Max. Time for a break. x

RELATED POSTS:

Hey! Did You Get Me A Christmas Present? 

Dr. Bella to the Rescue!

- Have You Met My Babies? 

20

Aug

CRPS & Ketamine & Spinal Cord Stimulators! Oh, My!

The ups and downs of what has truly become a real-life medical circus ;) 

I leave for Chicago & a dreaded 3-day ketamine infusion tomorrow. I’m seriously disliking this fact, yet I’m also trying my very best to positively visualize that it will all go incredibly smoothly. 

Another procedure already? Why???

Well, since my successful Spinal Cord Stimulator (SCS) was implanted, to aid with the excruciating pain of my lower body - learn what an SCS is by clicking here! - I’ve had serious pain at the two incision points in my back (I already had CRPS/RSD in this area pre-surgery) along with general CRPS/RSD pain in my upper body which seems to be getting rapidly much worse. As the incisional pain is still generally quite new, my doctor has hopes that he can knock it out with the ketamine. Prayers for this, please! I always greatly appreciate (and reciprocate if I know about them) any sort of positive vibes sent my way :) x

The good news! 

At the moment, I am SO happy with the SCS that I have. It took a while to get used to it, don’t get me wrong. I won’t lie to you, I HATED IT at first and found that I almost couldn’t feel the relief for the first few weeks due to the ridiculous muscular pain in my back that almost no medicine could scratch. Then of course there was the bizarre strange new buzzing feeling that I needed to adapt to. The device would be far too strong, and then far too weak. I was by no means an SCS Remote Control pro! However, my doctor asked me to stick it out, and as I’d gone through 3 surgeries (I’m sure we all remember the annoying fact that I had to have the device repositioned almost immediately?) I trusted him and listened. For that, I am SO happy.

If there’s one piece of advice I can give… listen to what my doctor told me (unless your doctor has told you something very specifically different. Remember… I’m not a doctor or medical professional!) and do the same! Also, unless of course you’re SCS is buzzing in the wrong places as mine was originally.  

Of course, it’s important to note that my SCS does not provide 100% relief. Oh no!!! In fact, it doesn’t even provide 50% relief - but that was never promised or expected. Many may read this and wonder with such a big hassle and such little relief, why I even bothered… but to my CRPS/RSD followers, I’m sure they can understand. I wish that they could ALL experience my relief level of perhaps 40% on a good day. I may be in bed with a flareup at the moment and pain may still be a massive part of my life - but hope is back. This device has changed my life.

(Photo Credit: Boyfriend Josh, Post-SCS surgery: San Francisco Pride 2012) 

18

Jul

Cross Another Off the Bucket List :)
Yay! First hike since being diagnosed with CRPS/RSD!
I can’t believe I was in the hospital so recently!
It just goes to show that anything is possible :) Trust me, if I can push through it (and to be honest… this coming from a girl whose current major passions are: bed, HGTV, and the Golden Girls) you sure can too!
Did parts of it hurt a little? Heck yea! But that’s what life is all about. Even those so called ‘normal people’ (ha!) face challenges on a daily basis. So get out there on a good day* and show yourself what you can do! I’ll bet you’ll be pleasantly surprised. 
Lots more pictures to come of gorgeous Yosemite.
Lots of love & Be Well! - Danielle xx
*I am in no way, shape or form a doctor or health professional. I am simply someone who enjoys to see people like myself grabbing opportunities to live their lives in a positive fashion. If your doctor/PT/any other health professional has instructed you not to do something, listen to them over me! Think positively, take the correct steps & you’ll get there ever so soon! xx
RELATED POSTS: 
- Adventuring with Chronic Pain
- Fact of Life: When Fishing Such Faces Should Always be Made
- The Dreaded Cabin Fever…
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Cross Another Off the Bucket List :)

Yay! First hike since being diagnosed with CRPS/RSD!

I can’t believe I was in the hospital so recently!

It just goes to show that anything is possible :) Trust me, if I can push through it (and to be honest… this coming from a girl whose current major passions are: bed, HGTV, and the Golden Girls) you sure can too!

Did parts of it hurt a little? Heck yea! But that’s what life is all about. Even those so called ‘normal people’ (ha!) face challenges on a daily basis. So get out there on a good day* and show yourself what you can do! I’ll bet you’ll be pleasantly surprised. 

Lots more pictures to come of gorgeous Yosemite.

Lots of love & Be Well! - Danielle xx

*I am in no way, shape or form a doctor or health professional. I am simply someone who enjoys to see people like myself grabbing opportunities to live their lives in a positive fashion. If your doctor/PT/any other health professional has instructed you not to do something, listen to them over me! Think positively, take the correct steps & you’ll get there ever so soon! xx


RELATED POSTS: 

- Adventuring with Chronic Pain

- Fact of Life: When Fishing Such Faces Should Always be Made

- The Dreaded Cabin Fever…

10

Jul

One more ‘HBOT Success Story’… 

I seemed to connect a lot more with this video, perhaps because she was a female? Maybe also because she spoke about how she still had pain in places? It just seemed more realistic to me & more similar to my experience

I would absolutely LOOOVE to hear your HBOT stories, both negative & positive. If you’ve never experienced HBOT, well that’s alright! I’d also love to hear what you think about it…

Wanna try it? Does it terrify you? Are you claustrophobic? Did it work for you? After these clips are you an HBOT believer? Do you have questions? Did it not work for you? Are you totally confused on how it works? Do you think it looks like a fantastic option? Are you having trouble with insurance? Etc…

LET ME KNOW! 

If you have a lot to say & use Tumblr, remember you can always write in the Disqus boxes. Or, you can tweet me @theproject3x5. Feeling shy? Email me: theproject3x5@gmail.com.

Be well!

Danielle xxxx