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!
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
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
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
17
Mar
When one thinks ‘Chronic Pain’, the emotions that immediately jump to mind are most likely already looking for ways to lurk and seep their way back to the slimy and grimy most beaten up of recesses deep within one’s psyche. They aren’t exactly rainbows and butterflies!
The physical feeling of Chronic Pain sinks like an anchor, that may drag the best of us down to the bottomless pit of anger, fury, self-pity, and endless doubt. Shameless and greedy however, this Chronic Physical Pain begins to grow stronger in time - and no longer merely satisfied with the ‘unsophisticated emotions’ it has already royally made a mess of, it couples up with an emotional pain that may at times seem almost unforgiving.
That’s right… I’m talking about the all-consuming emotional pain of loneliness, disconnection, and alienation. As though sinking in a quicksand pit of these emotions, you have no choice but to surrender yourself one back, shoulder, knee, limb, digit, etc. at a time. There are so many names for it, but alienation by any other word still sucks - especially in the midsts of its absolutely nutty, relentless, overwhelming, unwanted, and mad companion - pain.
The written piece in the link above (and shown partially below the picture) is called “In the Midst of All this Madness: Alienated” and was written by the fantastic and brilliant Megan over on her blog “In the Midst of All this Madness”. She’s a brilliant writer and pretty spot on at capturing the emotions that we (or at least, I, and based on your emails many of y’all most likely) feel on particular things.
DEFINITELY READ ON!
(One Last TheProject3x5 Thing! Sharing this picture of me at my most alienated has made me feel much better. It’s like an emotional weight lifted off my already far-too-heavy shoulders, and I’m thankful to all of y’all for helping me get to this point! Share yours along with me (EVERYONE welcome! The more the merrier. No illness necessary.) as we give each other strength and possibly courage to those starting their recent journey. There’s no need to hold all the stress of that moment to yourself anymore.
A little backstory on my moment?
Having just lost a very dear friend as a Ranger in Afghanistan, I immediately flew from his funeral to Chicago for a first heavy dose of Ketamine in search of relief. It’s impossible to describe what you undergo and feel during such a treatment. Especially when you’re given such a heavy dose with a mind that’s littered with devastation. I had been warned to go in with a “clear, stress free mind”. Now I understand why! Upon completion, I received a phone call to say that another dear friend had passed away in a diving accident. In her writing below (or if you click on the link above!), Megan refers to this as, “stuck in a moment of time.” I’m quite possibly still stuck! I say it all the time. Anyway, in an effort to lift my spirits and normalize me somewhat… my mother shook the shock from me and up to the bustling top of the famous Sears Tower we went. An invisible ledge only seemed suiting for someone with an Invisible Illness. And so, here I am, feeling as though it’s me against the world. Cryogenically frozen somewhere over the streets of Chicago. I may be bundled up in a cloak of confusion, yet as always… I’m wearing my suit of armor. xx
I feel odd. I refer to the feeling as disconnected, but even still, I am not sure exactly what it is that I feel. This pain becomes so alienating. So long as the pain is at a manageable level I can feel human, I can draw a connection with others. But as my discomfort climbs higher, and higher, I…
04
Mar
* Click the headline for some simple tips that can help us all! Hope that everyone is having a great day! Don’t forget that I tweet when I’m not blogging @theproject3x5. Come and find me there! It’s lonely without you! - Danielle xx
(Article via Health.com) (Picture via me) (Friendship via Leiyen xx)
02
Mar
via inthemidstofallthismadness