Link reblogged from Project3x5 with 12 notes
"How not to say the wrong thing..." Someone you know ill? Watch what you say and to whom. →
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?*
#Crps #Rsd #Pain #Faith #Spoonies #Strength
Link reblogged from "Hypermobile" with 3 notes
Why Does Sugar Make My Pain Worse? →
There’s only one thing that makes me happier than candy and cookies, and that’s Disneyland, so naturally I was pretty upset when boyfriend sent me this article today.
What do you guys think?
#Rsd #Crps #Pain #Faith #Diet #Pain
Photo reblogged from Just Another Sick Girl with 23 notes
#CRPS #RSD #PAIN #FAITH #Spooniea
Source: mamapain
Link reblogged from Project3x5 with 8 notes
NEW MEDICAL TECHNOLOGY! Can this Pacemaker-for-the-Brain switch off Chronic Pain..? →
“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!
- Write in the Disqus Comments below!
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- Email! theproject3x5@gmail.com
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
![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)
#Chronic Pain #CRPS #RSD #Parent
#Cure # Faith #Brain #Invisible Illness
Link reblogged from Project3x5 with 14 notes
In the Midst of All this Madness: Alienated →
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.
- Email it!- theproject3x5@gmail.com
- Tweet it! - @theproject3x5
- Comment it! - Press Short URL, then look below the piece!
- Can’t wait to for the inspiration to start flooding in. Will keep it confidential if that’s what you’d prefer :)
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…
#chronic pain # CRPS #cure RSD #Friends #Spoonies
Source: inthemidstofallthismadness
Video reblogged from Project3x5 with 14 notes
It’s Rare Disease Day today!
Want to learn more about it? The short video above is a brilliant start!
Of course, there’s also loads of info up on the official website (www.rarediseaseday.org). There, among other things, you’ll find news, fundraisers - like the oh-so-simple! one still happening right here on TheProject3x5 - and last but not least all sorts of activities that will allow you to interact on a global scale with others in a similar situation.
The slogan this year for the 6th annual Rare Disease Day is “Rare Disorders without Borders” emphasizing the need for international cooperation. Well, it just so happens that one of the things I’m most proud of about TheProject3x5 is how far-reaching and global my readership is. So everyone get involved! Go to the official website and go beyond your border for your rare disorder! Let’s demonstrate global solidarity and show them what we’re about.
You guys are the best! Thank you so much for your strength and the inspiration that you provide for me every single day. Lots and lots of love. - Danielle xx
#Rare disease Day #CRPS # pain #cure #awareness
Photo reblogged from paindrops with 6 notes
Orange for #crps awareness on #rarediseaseday
#CRPS #RSD #cure #PAIN#Rare Disease Day#Chronic pain #Faith
Link reblogged from Project3x5 with 5 notes
Project3x5: To-do: Appreciate. →
My to-do lists have recently each seemed as long as me. Ay! Overwhelming. You know the type, I’m sure! At first glance each list leaves me longing to simply curl up in a ball, house cat style, to just ignore all tasks completely. Sort of an: If I can’t see them, they can’t see me type of thing….
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