Esquire Theme by Matthew Buchanan
Social icons by Tim van Damme
13
May
Sorry! I’ve been out to lunch!
A very, very long lunch that included a rager of a Ketamine Treatment up at Rush Hospital in Chicago to handle this CRPS/RSD. Oof!
I’ve been missing you all very much though! Loving your emails, they always keep me strong - you all are the most inspiring bunch I’ve ever come across.
And have you seen me on Twitter?! You can always catch me there!
I’ll be right back though. I promise. xx
03
May
Jules Valles in ‘L’enfant’: “L says something absolutely brilliant that should be taught the World over! Not to mention it should be taken in a way that may be applied to all of us dumbfounded by such wisdom ;espace m’a toujours rendu silencieux”
(English: “Space had always defeated me to silence”.)
Layman’s term’s: Oh lawd! This is overwhelming!
29
Apr
09
Apr
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?*
26
Mar
“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!
![Another treatment for Parkinson’s: DBS
Deep brain stimulation (DBS) involves the implanting of electrodes in the brain that effectively “inactivate” a certain region. It can be quite sophisticated, using multiple electrodes that can then have different patterns of stimulation. There is a pacemaker that is implanted elsewhere in the body, usually where it can be removed to replace batteries and the like without too bad of side effects (so not in the brain tissue).
In Parkinson’s, the electrodes are surgically implanted into the subthalamic nucleus (STN) or the internal segment of the globus pallidus (GPi). For a refresher on the basal ganglia pathways, go here. STN excites GPi and GPi inhibits thalamus, both of which effectively decrease movements. In Parkinson’s, patients are having trouble moving due to the decreased dopamine feeding into the basal ganglia loops. Therefore, acting on STN or GPi and effectively inactivating those regions makes it so that movements will be easier.
It is also interesting to note that DBS can be used on other disorders, such as severe cases of obsessive-compulsive disorder (OCD) and Tourette’s Syndrome. Tourette’s is characterised by motor and verbal tics that can be very intrusive, not what you usually see on TV (for instance, I know a patient whose uncontrollable tic is to poke their eye and they had blinded that eye with it). DBS of the thalamus usually can be helpful for patients suffering from Tourette’s (I think you can figure out why it might be from what you know about the basal ganglia circuitry).
There are still more potential treatments for Parkinson’s that I will continue to discuss.
[Image Source]](http://25.media.tumblr.com/tumblr_lfdn4mUIDq1qb6etto1_500.jpg)
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
18
Mar
I’m dancing around in a fantastic mixture of both excitement and nervousness.
Why..? - I’m on holiday as of tomorrow!
Like an actual holiday. Not a holiday where I travel somewhere (albeit somewhere lovely) for an obscure treatment. Or off overseas (albeit somewhere exotic overseas) to be closer to my family for support. I’m not even taking anyone with me. I’m totally on my own for this one. WHAT?! Yup! For the first time in 3 years I’ve decided to put myself before my CRPS/RSD.
By that I mean: Let’s see how friendship, fun, and distraction fare over physical therapy and living in a bubble.
The 3rd anniversary of my accident falls on March 30th, 2013 which is while I’m away. So let’s celebrate the fact that I’m alive and doing well by, you know… actually living…
See you tomorrow East Coast!
- Lots of love and plenty of positive vibes - Danielle xx
13
Mar
Kill off all my demons and the angels might die too.” / Tennessee Williams
(paraphrased for the movie Transsiberian)
08
Mar
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
05
Mar
![If Laughter is the Best Medicine!
Here’s something to help all those suffering today! xx
(Image via CartoonStock.com)
Tweet
// ]]]]>]]>](http://24.media.tumblr.com/8c87d2b006b33a121f248f03c9e6e8e0/tumblr_miy9q1Yhrk1qkc92eo1_400.jpg)
If Laughter is the Best Medicine!
Here’s something to help all those suffering today! xx
(Image via CartoonStock.com)
