Dystrophy 

20 creative works found

• 

  RSD Its Twisted
  by KimberlyNic

  Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome is a degenerative crippling disease affecting Millions of people around the world. There are countless numbers of sufferers, living in the silent agony of neuropathic pain because of miss diagnosis and misunderstanding. / Save a loved one a life of living hell by learning the signs and symptoms. PLEASE DO BELIEVE HOW BAD THE PAIN CAN BE! / To learn more and find out what you can do click here >RSD/CRPS Info @ RSDHOPE / I created this Digital Portrait of myself and the pain I endure on a daily basis. I started painting this image only to have my hands demand I stop. Since my diagnosis I have learnt to become very ambidextrous unfortunately my RSD is trying to spread hindering both arms, shoulders, neck back and full face. This also makes comfortable sleep impossible so affects my hips legs and feet. Until I find another glimpse of hope I will have to put the painting aside and use my trusted faithful Image manipulation techniques to try and tell MY story. / The weather dominates my life; it brings me days of happiness along with many days of grief. The slightest breeze can burn my skin, a strong cold wind completely freeze burn my arm, constricting all the blood vessels, starving my muscles of oxygen causing a plethora of problems. Hot water can feel lovely, but the motion of the water can irritate my skin severely, too hot and I burn my hand through lack of essential nervous responses to tell me to pull away. Cold water triggers the chain reaction of “my blood supply temporary shutdown” that is excruciatingly painful although delayed, so by the time I feel the pain I have caused too much damage to reverse the cycle. Many muscles spasm, periodically without warning, usually after a very smalln accident like bumping the door handle on the way past, reaching for the salt on a high shelf or washing my hands under cold water. One warning sign I’m beginning to recognise is my hand turns dark when I over-use it; within a few minutes of this happening, I have muscular spasms that send a chain of spasms throughout my upper extremities then to my face. If anyone touches this area whilst this dreadful beast lashes my body, the touch can feel like a gunshot wound, triggering more responses. I am usually left with the feeling of being shot in the head, shoulder and back, and then being nailed to a tree trying to pull myself free. My nails are grooved and brittle, I lose a lot of hair seemingly by the season, and then my hair grows back thicker and curlier then before! I have signs of arthritis and muscular atrophy. All wounds take a long time to heal. I am vague, sleep deprived; touch deprived and deprived of being myself! My medications make me nauseas, dizzy, tired and grumpy to say the least. Don’t pity me, pity those around me!I am a lucky one….... my case is considered MILD! *Note: Any sales will help a sufferer in QLD Australia(me) in need of expensive medications and treatments.

• 

  TRAPPED_Portrait of a Chronic Pain Patient
  by Lotacats

  Chronic Pain. Fibromyalgia, RSD, Reflex Sympathetic Dystrophy Syndrome, Myofacial Pain Syndrome, Osteo and Rheumatoid Arthritis and much more.

• 

  Portrait of a Chronic Pain Patient_lettered
  by Lotacats

  Lettered version of “TRAPPED”

• 

  Portrait of a Chronic Pain Patient
  by Lotacats

  Fibromyalgia, Myofacial Pain Syndrome, Reflex Sympathetic Dystrophy Syndrome, Osteo and Rheumatoid Arthritis and much more.

• my reflex sympathetic dystrophy (rsd) story part 2
  by Hayley Cafarella

  In a follow up to number one / Here is the second Vlog I’ve done / I’m a bit further through / This story of mine / But it is quite long (and…

  In a follow up to number one / Here is the second Vlog I’ve done / I’m a bit further through / This story of mine / But it is quite long (and complicated) / So will take some time… I hope you enjoy coming along for the ride :) Watch at Rellacafa

• my reflex sympathetic dystrophy (rsd) story part 3
  by Hayley Cafarella

  A little medical information / To help explain my situation / RSD is a constant curse / With pain that goes from bad to worse / And with so s…

  A little medical information / To help explain my situation / RSD is a constant curse / With pain that goes from bad to worse / And with so so much / That’s still unknown / The need for awareness / Is clearly shown Thank you for following my story. Please let the meaning of RSD be what you learn today… My Reflex Sympathetic Dystrophy Story part 3

• my reflex sympathetic dystrophy (RSD) story part 4 & some THANK YOU!s
  by Hayley Cafarella

  I was super honoured to find out that I was featured in a couple of groups this week. THANK YOU! It has made my week to have my work appr…

  I was super honoured to find out that I was featured in a couple of groups this week. THANK YOU! It has made my week to have my work appreciated like this… My poem The Dove was featured in Masterpieces: Literary Workshop / I am very proud to be amongst the other writers currently featured :) I would also like to say a huge THANK YOU! to the Uncoventional Artistry group for featuring my video journals regarding my RSD. It is no fun suffering from a condition that no one has ever heard of and so I am super grateful to the group’s lovely host Brianne for helping me raise awareness. And now I come to the little op / I needed when my hip went pop / Too bad the pain just didn’t stop / And so more suffering I did cop My Reflex Sympathetic Dystrophy (RSD) Story part 4 Merry Christmas! Hope your holidays are filled with magic and sparkles!!

• Good Riddance 2008: Year of the Hell
  by Hayley Cafarella

  Right throughout this year did rain / Torrents of torture and barrels of pain / Here’s hoping that it can be set right again / Cause it’s do…

  Right throughout this year did rain / Torrents of torture and barrels of pain / Here’s hoping that it can be set right again / Cause it’s doing my head in, just staying sane Good Riddance 2008: Year of the Hell

• Welcoming 09 With a Bang and a Mic
  by Hayley Cafarella

  Shedding off 08 involved / The problem of my pain being solved / With a glass of wine / Or maybe more…. / With enthusiastic sing stars / And…

  Shedding off 08 involved / The problem of my pain being solved / With a glass of wine / Or maybe more…. / With enthusiastic sing stars / And a loony dance floor Watch highlights at my blog Rellacafa Now for the rest and recovery! Happy New Year Bubblers! Bring on the sunshine 09!!!

• Living With RSD #1: The Hand Flare
  by Hayley Cafarella

  A sidestep from my story vids / Because my hands have hit the skids / A little look inside the pain / To where I’m waiting, hoping again ...

  A sidestep from my story vids / Because my hands have hit the skids / A little look inside the pain / To where I’m waiting, hoping again Living With RSD #1: The Hand Flare

• My Reflex Sympathetic Dystrophy (RSD) Story part 5
  by Hayley Cafarella

  Just as I was recovering in the hip / My body took another slip / This time striking me in the jaw / With I not knowing whatever for! Tha…

  Just as I was recovering in the hip / My body took another slip / This time striking me in the jaw / With I not knowing whatever for! Thanks so much to all of you taking the time to watch these clips, it means a lot to me to be able to get the word out about this horribly debilitating yet unknown condition…thank you xx My Reflex Sympathetic Dystrophy Story part 5

• Living With RSD #3: From Crap to Crappier
  by Hayley Cafarella

  Feeling tired / And uninspired / Nerves have fired / Far too much pain / I’m so tired / Of just dealing / Again “*Living With Reflex Sympat…

  Feeling tired / And uninspired / Nerves have fired / Far too much pain / I’m so tired / Of just dealing / Again Living With Reflex Sympathetic Dystrophy (RSD) #3: From Crap to Crappier But a few days ago / A happier post / Out in the country / Where I love it most A Spa, A Massage & A Wish

• Stumbled Upon & Some More Excitement From My Life With RSD
  by Hayley Cafarella

  One of my poems was Stumbled Upon recently and seems to have received a lot of thumbs up…when I logged in and saw my views had suddenly…

  One of my poems was Stumbled Upon recently and seems to have received a lot of thumbs up…when I logged in and saw my views had suddenly jumped into the tens of thousands, I was thoroughly confused. I thought it must have been a glitch, but no, apparently it must have been getting a lot of thumbs up as the hits keep coming…It’s nice to know those old words of mine are able to reach people like that! How exciting! I’ve been blogging again at my shiny, new domain / I’m supposed to be in hospital / But at home I still remain! Rellacafa I do hope the ketamine will work, especially after all this extra anticipation time… Speaking of, in a blow to RSD sufferers in the US, Germany is no longer taking US patients for ketamine comas. There was a complication recently in which an unfortunate American woman contracted an MRSA infection 2 days into her treatment. MRSA is a common infection that could be caught in any hospital, anywhere in the world. The reason that this would stop them running a program that is giving sufferers their lives back is a little unclear…I’m hoping to hear more about this soon as it really doesn’t make much sense right now. The idea that RSD treatment would take a backwards step because of a common infection is pretty distressing…we need MORE treatment opportunities, not less…and by we I mean sufferers world wide, it’s all of our problem.

• Imagine Living With RSD....
  by Hayley Cafarella

  The morning comes and you open your eyes, the light filters softly in around the curtains. You slowly stretch out your body over an exces…

  This is a piece I wrote to try and explain what it’s like to live with RSD. It’s a choose your own adventure piece, only you don’t get to choose your own adventure because when you live with RSD, you don’t get to choose much of anything at all! I hope this can help give you an idea of how much of your life is stolen when you are forced to spend every day in excruciating pain. I’m not looking for your sympathy, simply your understanding. To read and subscribe to associated blog updates, please visit: / http://rellacafa.com For more information about RSD please visit: / The Reflex Sympathetic Dystrophy Syndrome Association

• The God of Irony and Why He Had Me Punished
  by Hayley Cafarella

  It seems no matter why I try / Irony is always standing by / To thwart me as I try to stand / And send me crashing back to land I tried t…

  It seems no matter why I try / Irony is always standing by / To thwart me as I try to stand / And send me crashing back to land I tried to go out and have one drink in a bar to celebrate with friends…I got stomped on…right on my ankle…right where the initial injury that caused my RSD happened. It hurt. A lot. You can read the whole story here: http://rellacafa.com

• Why I Am Lucky And Will Be OK...With Sketching
  by Hayley Cafarella

  Despite days since my stomping on / The pain is flaring just as strong / But I’m trying to turn this mood around / Keep these swollen feet o…

  Despite days since my stomping on / The pain is flaring just as strong / But I’m trying to turn this mood around / Keep these swollen feet on solid ground And remember how lucky I am. This is the latest imaginaiad, Leni, she’s just a sketch right now but is looking forward to getting her colours… Rellacafa

• Waving a White Flag at Reality
  by Hayley Cafarella

  There is no use denying / Bad happens to good people too / There is no use in crying / That bad shouldn’t happen to you

  I’ve really had to put a lot of effort into learning to accept things over the last couple of years…I suppose this poem is a little about that and a little about extremism…I don’t believe you have to always see half glasses of water as half full or half empty, although logic would have me think if it was originally empty then it’s half full, if was originally full then it’s half empty, but mostly I simply accept that half of the glass is filled with water, for better or for worse, that’s just the way it is and I’ll find a way to work with that much liquid ;) I absolutely believe in having hope and being optimistic about the unknown, I just perhaps don’t feel the need to work myself into a state of denial that doesn’t let me prepare myself for if things don’t go so well. I hope and I dream, but I try not to expect…closed expectation can be very, very dangerous. Expect that things might turn out differently to how you expect them too…lolz…that’s probably the most balanced form of expectation. Perhaps this is a long winded way of saying ‘take it as it comes’? Hope for everything, expect nothing. Read & Subscribe to my blog updates at: http://rellacafa.com

• One Breath After The Other
  by Hayley Cafarella

  It’s like a constant waiting game / With each and every day the same

  Sigh…this is just life with RSD…there are not guaranteed treatments or cures. Sometimes my body flares up in such pain that I can’t even believe I stay conscious and yet there is nothing I can do about it, I cannot take a painkiller and make it go away… I hope that by sharing my story and experiences I can help educate people about RSD/CRPS…suffering from an unknown and invisible disease makes it extremely difficult to get by in a society that judges on appearance. It’s not like having a condition that people understand, like Epilepsy or Multiple Sclerosis. RSD sufferers have to explain their condition constantly, even to the doctors and nurses they rely on and often are met with looks of disbelief and suspicion. Please understand that this is not ‘phantom pain’, this is REAL PAIN, our nerves are firing pain signals constantly, there is just not a known reason for them to be doing that. Please be aware, when you are out there in the big, wide world, that there are medical conditions that you might never have heard of, degrees of pain that you might not understand…just be aware and maybe don’t got ramming people out of your way and stomping on their feet, you might be causing a lifetime of pain. Thanks for taking the time to read this, thank you for listening, by simply listening you have helped my cause…thanks again. If you are interested in learning more about my situation, please subscribe to my blog at http://rellacafa.com

• An RSD Update & An Exciting Double Feature!
  by Hayley Cafarella

  Howdy Bubbletrons, These days pass in a blurry haze / I’m trying not to be all phased / Been suffering with a dreaded cold / That’s tryin…

  Howdy Bubbletrons, These days pass in a blurry haze / I’m trying not to be all phased / Been suffering with a dreaded cold / That’s trying to force me to fold Extra discomfort is just not what you need on top of RSD! Finally catching up on my blog / Updates got a little lost in the fog / But now I’m feeling back on track / And up to helping share the facts Video style. http://rellacafa.com In other exciting news, for the first time ever a piece of mine was featured in two different groups…thanks everyone at the Core and All Out Emotion groups!! The piece is: Waving A White Flag At Reality Hope all is well in your world!! / xx

• Pain Removed Me From The Bubble For A Bit....Hi Guys
  by Hayley Cafarella

  Hey Bubbling Buddies, I am so terribly sorry for neglecting you over the last month or so. I went in for a ketamine infusion in Februa…

  Hey Bubbling Buddies, I am so terribly sorry for neglecting you over the last month or so. I went in for a ketamine infusion in February, it kind of went badly and then I got really sick with a virus turned chest infection that would not quit…since then I have been dealing with flares that are more violent and restricting than usual. I am, sadly, not able to do much drawing or painting in this condition, having more trouble with my hands than I used to. I am looking at moving to a bigger place so I’m hoping if I can have all my art things set up then I will still be able to get there, a little bit at a time. I am still trying to keep my blog updated, spreading awareness is hugely important to me right now as I have tried most of the treatments available in Australia and yet my RSD/CRPS worsens…I really need a miracle right now! I noticed after I filmed my ketamine story that I had featured JC Saint Po’s 2009 calendar in the background, his work is awesome, loving having a new piece on the wall each month! http://rellacafa.com I will try and update this journal when I’m able and if my medicine rattled brain spews out any little poetic pieces I shall share them with you too. Hoping to catch up on your updates and artwork asap, I miss the way you keep me inspired! x