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How do I do it?

Author:

Absolutely nothing great about having to live by these rules but it certainly saves me alot of extra pain, I have more up time and, above all, I decided this is just temporary. I’ll do what it takes to get by most comfortably (if I can dare to use such a word for a chronic pain site!):

  • Write in my journal, release frustration there
  • I found relaxation techniques (from foot rubs to breathing, showers, smelling flowers, etc)
  • I learned and practice Alexander technique
  • I have regular massages with the same practitioner (cupping included)
  • I accept help
  • I lean/rest everywhere, even on traffic lights, I use my elbows on the table (who says its rude?)
  • I have a walking stick for a more difficult outing (like travel or gallery visits)
  • I sleep in, rest, nap or all at different intervals throughout the day
  • I have insoles gallore! I insert a heel gel under my shoe’s sole and then insert a full length Crock sole ontop of my shoe’s sole
  • Limit transportation as much as possible
  • I’ve made home super comfy and as happy as possible, things within easy reach and as light weight as possible (plastic fantastic!)
  • I’m totally setup on the internet so I can communicate to all my friends and family and stay in the loop with my great loves, design and art
  • I accepted more help
  • I shop online
  • I bought a smart phone (allows me to travel much lighter, play mind strengthening games, use resourceful apps, stay creative with photography, social networking, keeps you in touch with the world etc etc),
  • Sadly, packed away the g-strings for now and replaced them with nice full and firm underwear. Nothing synthetic or too tight
  • Keep the ice pack and heat pack handy at all times
  • I’m strictly keeping my weight down (the cruelest of all, as if being in pain isn’t bad enough I have to diet!!!!!!!!!!!!!!!)
  • Do my own research at all times, keep up with my condition’s progress
  • Listen to my body
  • I write, read, draw, learn, whatever, I find some short, light, flexible duties
  • I take part in my community as much as I can (gallery openings, have a coffee with a friend, simply bump into neighbours while walking, post a letter, even though it hurts I still go out for dinner, a drink, anything I can manage)
  • I accept even more help
  • When I feel like I can handle the pain, I move, do a little dance, whatever I just do it!
  • I understand that everything I do counts, even a sneeze (ok they count alot!) so I make sure I pick and choose what I do
  • I learned and practice the word pace
  • I’m more selfish
  • I say “I can’t” and recently I’ve even stopped apologising because “I can’t”!
  • I let go of obligation (actually I need to work on that one)
  • Keep any visit short, close, soft (not too many parties unless you can walk away)
  • I email my WorkSafe case manager to eliminate hearing all unnecessary hogwash
  • I have a daybed and made a ‘dayspace’ no where near a television or my bedroom
  • I have a dog, he’s one of my biggest aids

Glossary

Author:

avulsion The forcible tearing away of a body part by trauma or surgery

chronic A chronic condition is continuous or persistent over an extended period of time. A chronic condition is one that is long-standing, not easily or quickly resolved (tipna.org)

coccygeus muscle One of two muscles in the pelvic diaphragm. A triangular sheet of muscle and tendinous fibers. It acts to draw the coccyx ventrally, helping to support the pelvic floor (see also Levator Ani)

coccyx A small triangular bone at the end of the spinal column

entrapment A disorder of a peripheral nerve characterized by pain and/or loss of function of the nerves as a result of chronic compression. The most common form of entrapment is Carpal Tunnel Syndrome (tipna.org)

epidural Injection of anaesthetic into the space outside the dura mater enveloping the spinalcord

episiotomies Surgical incision into the perineum during the late stages of labour to prevent its laceration during childbirth and to make delivery easier

fascia A sheet or band of fibrous connective tissue enveloping, separating, or binding together muscles, organs, and other soft structures of the body

fibrosis Formation of fibrous tissue

hyperaesthesia A neurologic symptom where there is an unusual increased or altered sensitivity to sensory stimuli

innervation The arrangement or distribution of nerves to an organ or body part

levator ani One of a pair of muscles of the pelvic diaphragm that stretches across the bottom of the pelvic cavity like a hammock, supporting the pelvic organs (see also Coccygeus Muscle)

ligament 1. A band of fibrous tissue connecting bones or cartilages, serving to support and strengthen joints.
2. A double layer of peritoneum extending from one visceral organ to another

nerve block Injection of a local anesthesia to temporarily stop the ability of a nerve to transmit pain signals. The typical anesthetic for PN nerve blocks is lidocaine. PN nerve blocks are an important diagnostic tool.

neuromodulation Electrical stimulation of a peripheral nerve, the spinal cord, or the brain for relief of pain.

Neuralgia (Dictionary.com) – Pain along the course of a nerve. (MedicineNet) Also: A disease, the chief symptom of which is a very acute pain, exacerbating or intermitting, which follows the course of a nervous branch, extends to its ramifications, and seems therefore to be seated in the nerve. It seems to be independent of any structural lesion.

Neuralgia (tipna.org) A subset of neuropathy. Thus the more precise term for pudendal area pain is Neuralgia. PN is therefore best called Pudendal Neuralgia, not Pudendal Neuropathy, as we have been accustomed to doing. Thanks to Pierre Gauvin for this observation

Neuropathy A disease of the nervous system. The three major forms of nerve damage are: peripheral neuropathy, autonomic neuropathy, and mononeuropathy. (Wikipedia) [Need to explain peripheral versus autonomic nerves, how PN is a form of peripheral neuropathy.]

obturator A structure, such as the soft palate, that closes an opening in the body

parturition The process of labor and delivery in the birth of a child

pelvic floor The soft tissues enclosing the pelvic outlet

perineum 1. The pelvic floor and associated structures occupying the pelvic outlet, bounded anteriorly by the pubic symphysis, laterally by the ischial tuberosities, and posteriorly by the coccyx
2. The region between the thighs, bounded in the male by the scrotum and anus and in the female by the vulva and anus

peripheral a. Of the surface or outer part of a body or organ; external
b. Of, relating to, or being part of the peripheral nervous system

piriformis A muscle in the pelvic girdle that is closely associated with the sciatic nerve

prolapse Protrusion of

sacrum The large wedge-shaped bone, consisting of five fused vertebrae,inthelowerpart of the back

symphysis An adhesion of two or more parts

syndrome A set of symptoms occurring together

viscera The soft internal organs of the body, especially those contained within the abdominal and thoracic cavities

Pain score

Author:

I’ve only ever filled one pain score sheet where I felt there was a clear understanding about neuropathic pain (and I’ve filled a few in my pain time). The remaining sheets I’m sure, were created in the dark ages and leave me bewildered how any accurate conclusions can be made from them.

But I developed my own pain score which I’m sure when read by anyone without neuropathic pain, will be enough to convince them I’m mad and in fact I must have fallen on my head not my backside. But this site isn’t for those people, (go off and play… you don’t need to be here and good luck to you).

My pain score goes something like this:

Express yourself

Author:

I often don’t feel like talking or explaining the same boring chronic pain story over and over. And I’m thinking there may be a few people out there who feel the same. So, here’s some artwork for you folks. Feel free to use it to order caps, t shirts, mugs, honestly, do whatever you want with it, just don’t take my name off or manipulate the artwork.

Oh, and pop me a message of thanks. Perhaps even come back with some images and I’ll create a pain gallery!!! Oh come on, let’s try and have some fun… what other choice do you have?

 Don’t bump me download  It hurts every day download
 Escape the birdcage download  In the birdcage download
Don’t Bump me, It Hurts Everyday and Birdcage artwork by Soula Mantalvanos is licensed under a Creative Commons Attribution 3.0 Australia License.

Down the hole: a descent into painful isolation

Author:

Sydney Morning Herald, May 5 2009

Cramped … The Shrinking World by Chia Moan.

Cramped … The Shrinking World by Chia Moan.
Clare Morgan Arts Editor

AS ALICE is trapped in the home of the White Rabbit, so people who suffer from chronic pain feel trapped in a world that few can understand.

Chia Moan’s painting Shrinking World aims to shed light on the effects of living with severe and persistent pain.

Moan is among 30 emerging and established artists in the show Windows On Pain, which follows last year’s inaugural event organised by the Pain Management Research Institute.

Moan was among artists who spoke to pain sufferers and says she remembers one patient who said she felt like Alice disappearing down the rabbit hole, with the opening at the top growing smaller and smaller.

“People who live with chronic pain deal very literally with shrinking options in their lives. If and how they can work, exercise, socialise, travel,” Moan says.

“Usual activities are affected, all subjected to scrutiny: what is possible, what is not? They also speak frequently about not being able to communicate their pain, wearing a mask.”

Some of the artists suffer from chronic pain. Sheila Annis’s installation, Portals, is designed so that when viewers enter, they experience isolation.

“When we think of pain we all too often simply think of the physicality of pain,” Annis says.

“But psychosomatic pain can never be underestimated. Pain works to disconnect us from ourselves as much as from others. It is made worse by isolation. Pain is my motivation to create art.”

Nikki Brown, from the Pain Management Research Institute, says chronic pain affects about 3.2 million Australians of working age and costs the nation about $34 billion in lost productivity and associated medical costs.

“Pain is still not very well discussed, much like depression 20 years ago,” she says.

The institute raised about $220,000 last year, and the show and auction won the Fundraising Institute Australia’s national award for best special event in 2008. This year’s auction will be at a the Art Gallery of NSW on June 12.

“The institute does research, education and clinical work. Where we fall short in our funding is being able to accelerate our research when there are exciting breakthroughs so we can help people more quickly,” Brown says.

Windows On Pain is at CarriageWorks, Redfern, until next Monday, Ewart Gallery, Willoughby, May 12-18, Gosford Regional Art Gallery, May 20-30, and Parramatta Riverside Theatres, June 1-10.

Pain as an Art Form

Author:

April 22, 2008, 6:59 am

Pain as an Art Form

By TARA PARKER-POPE
INSERT DESCRIPTION
Selections from the Pain Exhibit. To see a slide show, click here.

Pain doesn’t show up on a body scan and can’t be measured in a test. As a result, many chronic pain sufferers turn to art, opting to paint, draw or sculpt images in an effort to depict their pain.

“It’s often much more difficult to put pain into words, which is one of the big problems with pain,” said Allan I. Basbaum, editor-in-chief of Pain, the medical journal of The International Association for the Study of Pain. “You can’t articulate it, and you can’t see it. There is no question people often try to illustrate their pain.”

INSERT DESCRIPTION“The Broken Column,” by Frida Kahlo (Banco de México Diego Rivera and Frida Kahlo Museums Trust)

One of the most famous pain artists is Mexican painter Frida Kahlo, whose work, now on exhibit at the Philadelphia Museum of Art, is imbued with the lifelong suffering she experienced after being impaled during a trolley accident as a teenager. Her injuries left her spine and pelvis shattered, resulting in multiple operations and miscarriages, and she often depicted her suffering on canvas in stark, disturbing and even bloody images.

Sacramento resident Mark Collen, 47, is a former insurance salesman who suffers from chronic back pain. After his regular doctor retired due to illness, Mr. Collen was struggling to find a way to communicate his pain to a new doctor. Although he has no artistic training, he decided to create a piece of artwork to express his pain to the physician.

“It was only when I started doing art about pain, and physicians saw the art, that they understood what I was going through,” Mr. Collen said. “Words are limiting, but art elicits an emotional response.”

Mr. Collen wrote to pain doctors around the world to solicit examples of art from pain patients. Working with San Francisco college student James Gregory, 21, who suffers from chronic pain as the result of a car accident, the two created the Pain Exhibit, an online gallery of art from pain sufferers. The images are evocative and troubling.

“Some of them are painful even to look at,” Dr. Basbaum said. In November, he included an image from the site on the cover of Pain; it can be seen here.

Finding ways to communicate pain is essential to patients who are suffering, many of whom don’t receive adequate treatment from doctors. In January, Virtual Mentor, the American Medical Association Journal of Ethics, reported that certain groups are less likely to receive adequate pain care. Hispanics are half as likely as whites to receive pain medications in emergency rooms for the same injuries; older women of color have the highest likelihood of being undertreated for cancer pain; and being uneducated is a risk factor for poor pain care in AIDS patients, the journal reported.

Some of the images from the Pain Exhibit, like “Broken People” by Robert S. Beal of Tulsa, Okla., depict the physical side of pain. Others, such as “Against the Barrier to Life,” convey the emotional challenges of chronic pain. “I feel like I am constantly fighting against a tidal wave of pain in order to achieve some quality of life,” wrote the work’s creator, Judith Ann Seabrook of Happy Valley in South Australia. “I am in danger of losing the fight and giving up.”

Mr. Collen said the main goal of the exhibit is to raise awareness about the problem of chronic pain. However, he said he hopes one day to find a sponsor to take the exhibit on tour.

“People don’t believe what they can’t see,” Mr. Collen said. “But they see a piece of art an individual created about their pain and everything changes.”

To see a slide show of selections from the Pain Exhibit, click here, or visit the Web site to see the full gallery of photos. Another slide show from The Times in February features art created by migraine sufferers.

Art and distraction

Author:

My creativity has been one of my main coping mechanisms through my chronic pain life. It’s the place I go to feel free, release the steam, express my pain, and to get distracted to the point of pain! But it’s worth it every time. There isn’t a lot I can achieve with my capacity so one drawing, one painting over months, one post on my blog… anything, it’s all worth it.

Art helps with many health issues, even if you can’t participate, finding a piece that connects with you can also be helpful. And it’s something you can do from your own comfy seat (if you have one, I’m yet to find one!!).

Here are a few art sites that you can either contribute to or simply subscribe to for regular, beautifully distracting, updates. They are not all related to pain, I, for example try and avoid talking or expressing pain and rather choose to paint my happiness, it just feels like I don’t get away from the issue otherwise. I also prefer to seem like the old me, it’s my target. I like saying the words ‘I painted, I did, I am going to’ without having to add the ‘it took/will take me ages’.

Soula (my art)

I’ll start with my website: soula.com.au and my blog: soula.com.au/blog

redbubble.com

Gallery of Pain. The Art of Releasing Emotional or Physical pain..Ambience of Pain.

PAIN Exhibit website

Thank you for visiting the online version of the PAIN Exhibit, which showcases approximately 100 pieces of art from people with chronic pain from across the globe.

Artwhatson

artwhatson.com.au is a meeting place for art lovers, artists and galleries. Our e-news delivers a weekly snapshot of what’s happening in Australian art.

jennierosenbaum.com
facebook.com/contemporaryfigurativeart

Jennie works to maintain the image of the nude in art and writes a blog about censorship in art. She also leads a group for artists with disabilities.

Life Beyond Pain

Personal stories of struggle, strength, and success expressed through art.
Living Beyond Pain showcases the challenges of, and responses to, chronic pain in daily life. It contains artistic expressions of success—real stories of coping, managing, and moving beyond pain.

Kurt Wörsdörfer (Headcrime)

To the German artist, known in art circles as “Headcrime”, music provides instant visual associations. Literature, history, art, archeology and, unfortunately, life experience with chronic pain, influence his work.

dotsandyarn.wordpress.com

Music, Opera, Knitting, Food – the essentials as far as we are concerned.

smlacyart.com

Art opens up something inside of you that sometimes you forget is even there. Art transforms. It brings hope, peace and possibility. It brings life.

Arts Project Australia

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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