A) Be an active partner of the Dr.(s) in charge of your health-care. Write down any questions you have ahead of time, since short-term memory problems are common with RSDS. Always be willing to learn from your Dr. and share with them new information on RSDS as you receive it. Try to take someone into the office with you to help you remember what went on there.
B) Follow your Drs. advice on medications, exercise, rest, etc.
C) Know the medications you are taking and their side effects (if you are not sure then review them with your Pharmacist).Protect yourself, and your stomach, by eating properly.
D) Exercise regularly to keep joints flexible, muscles strong, and to maintain a range of motion in all of your limbs, RSDS affected or not.
E) Use good posture when you are sitting, get up and stretch when you need to. Don‘t over-do. Balance your workload.
F) Be kind to yourself.
G) Keep a journal. This becomes especially helpful for your Dr. and/or SSD/WC and other Drs. and other officials to show what you can and can‘t do on a regular/daily basis. It is also a good source of information to others whom you wish to share your story with.
H) Understand that some of your friends may drop off along the way or have a difficult time understanding and coping with your disease. This is not because you suddenly have become a bad person. Try sharing some basic information with them about RSDS and let them know it is ok to talk about it or not talk about it; that you are still the same person underneath.
I) Involve yourself in a support system such as an RSD Discussion Group, or local RSD/Pain Support Group. Take advantage of it as well as becoming a vital part of it. Help yourself by helping others and getting the word out.
J) Get a Medic Alert tag (1-800-432-5378) to alert Drs. and others to the fact that you have RSD and are on medications !!!
K) Become involved with the Internet Programs available such as Listservs and ChatRooms. These will help you learn about your disease as well as help others by sharing your story. If you don‘t have your own computer, try your local library.
Sunday, 27 April 2008
Rocking out to raise money for RSD research...
One of the most painful experiences for Ashley Goodall is when a person walks by.
The 16-year-old high school student from Bakersfield was diagnosed with a condition called Reflex Sympathetic Dystrophy Syndrome (RSD) when she was 8, and faces constant pain from stimuli as small as the breeze created by a person walking past her.
RSD, also known as complex regional pain syndrome, is a condition in which the sensory system of one part of the body gets turned on, leading to increased sensitivity to pain out of proportion to its stimulus.
“The pain is very excruciating ... it’s a stabbing, shooting, burning kind of pain,” said Lonnie Zeltzer, director
of the pediatric pain program at UCLA.
At one point, the pain was so bad for Goodall that she had to stop going to school because she could not be touched.
But instead of silently suffering from the condition, she decided to actively fight against RSD by forming a nonprofit organization with her mother called “Rock Out to Knock Out RSD”, to raise money for RSD research at UCLA through concerts.
The money raised by the organization will be used to provide the Pediatric Pain Program at UCLA Mattel Children’s Hospital with money for research for RSD as well as to purchase medical supplies and to teach others about the syndrome.
People suffering from RSD, often triggered by traumatic incidents such as accidents or invasive medical treatment, have a malfunctioning nervous system where neurons misfire, sending multiple pain signals to the brain.
RSD is usually limited to one part of the body, but can spread and cause temperature sensitivity and difficulty with certain types of movement.
Zeltzer added that about 200,000 to 1.2 million people, mostly women, are affected by RSD.
Before it was determined that she suffered from RSD, Goodall spent seven years visiting over 10 doctors, and in one misdiagnosis she almost had her arm amputated because a physician believed it was infected.
Once she was properly diagnosed, she underwent treatment, which for RSD patients can include medication, physical therapy and psychological support.
Though she had a very complete recovery, Zeltzer said she had a relapse, which is not uncommon.
Before her visit to Zeltzer in the pediatric pain program, where she was diagnosed, some people started to believe that she was making up her syndromes.
“It was hard to explain to people what I had. People thought I was making it up,” she said.
Goodall’s mother, Lori, said it was frustrating to witness her daughter’s difficulty in being properly diagnosed.
“It’s very difficult to see your child screaming in pain, and going through a ton of doctors to see what was wrong with her,” she said.
Though the idea started several years back, Goodall’s project became a reality last year, when $5000 were raised at the first concert event.
The second concert took place this past Saturday in San Luis Obispo where local bands Seed and Mystic Red performed.
Ashley’s mother said her daughter’s efforts are in the hope of helping families avoid repeating their difficulties in properly diagnosing RSD.
“I’m very proud of her,” Lori said.
“She does it not for the recognition, but so that other people won’t have to go through the same thing she did. So others won’t have to wait 7 years before finding out what is wrong.”
Goodall said she donated half of the proceeds and will use the rest to plan the next event.
She said she has received offers for help from as far as Canada and New Zealand.
Zeltzer said given Goodall’s difficulties, her efforts were selfless and commendable.
“Its unusual to have an adolescent still in high school take their condition and turn it into something positive,” she said.
“I think she’s a remarkable young woman who is dedicated, knows what she wants and goes after it. She exhibits tremendous strength and courage. Despite her own pain, she is still working to help others.”
The 16-year-old high school student from Bakersfield was diagnosed with a condition called Reflex Sympathetic Dystrophy Syndrome (RSD) when she was 8, and faces constant pain from stimuli as small as the breeze created by a person walking past her.
RSD, also known as complex regional pain syndrome, is a condition in which the sensory system of one part of the body gets turned on, leading to increased sensitivity to pain out of proportion to its stimulus.
“The pain is very excruciating ... it’s a stabbing, shooting, burning kind of pain,” said Lonnie Zeltzer, director
of the pediatric pain program at UCLA.
At one point, the pain was so bad for Goodall that she had to stop going to school because she could not be touched.
But instead of silently suffering from the condition, she decided to actively fight against RSD by forming a nonprofit organization with her mother called “Rock Out to Knock Out RSD”, to raise money for RSD research at UCLA through concerts.
The money raised by the organization will be used to provide the Pediatric Pain Program at UCLA Mattel Children’s Hospital with money for research for RSD as well as to purchase medical supplies and to teach others about the syndrome.
People suffering from RSD, often triggered by traumatic incidents such as accidents or invasive medical treatment, have a malfunctioning nervous system where neurons misfire, sending multiple pain signals to the brain.
RSD is usually limited to one part of the body, but can spread and cause temperature sensitivity and difficulty with certain types of movement.
Zeltzer added that about 200,000 to 1.2 million people, mostly women, are affected by RSD.
Before it was determined that she suffered from RSD, Goodall spent seven years visiting over 10 doctors, and in one misdiagnosis she almost had her arm amputated because a physician believed it was infected.
Once she was properly diagnosed, she underwent treatment, which for RSD patients can include medication, physical therapy and psychological support.
Though she had a very complete recovery, Zeltzer said she had a relapse, which is not uncommon.
Before her visit to Zeltzer in the pediatric pain program, where she was diagnosed, some people started to believe that she was making up her syndromes.
“It was hard to explain to people what I had. People thought I was making it up,” she said.
Goodall’s mother, Lori, said it was frustrating to witness her daughter’s difficulty in being properly diagnosed.
“It’s very difficult to see your child screaming in pain, and going through a ton of doctors to see what was wrong with her,” she said.
Though the idea started several years back, Goodall’s project became a reality last year, when $5000 were raised at the first concert event.
The second concert took place this past Saturday in San Luis Obispo where local bands Seed and Mystic Red performed.
Ashley’s mother said her daughter’s efforts are in the hope of helping families avoid repeating their difficulties in properly diagnosing RSD.
“I’m very proud of her,” Lori said.
“She does it not for the recognition, but so that other people won’t have to go through the same thing she did. So others won’t have to wait 7 years before finding out what is wrong.”
Goodall said she donated half of the proceeds and will use the rest to plan the next event.
She said she has received offers for help from as far as Canada and New Zealand.
Zeltzer said given Goodall’s difficulties, her efforts were selfless and commendable.
“Its unusual to have an adolescent still in high school take their condition and turn it into something positive,” she said.
“I think she’s a remarkable young woman who is dedicated, knows what she wants and goes after it. She exhibits tremendous strength and courage. Despite her own pain, she is still working to help others.”
Chronic pain disorder can affect the whole family...
HILLSBOROUGH -- Living with Reflex Sympathetic Dystrophy Syndrome can be a new experience not just for the person diagnosed but for families who also adapt to the disorder's conditions.
Stephen Brilliant, who was diagnosed in 1997, and his wife, Antoinette, said a major challenge was deciding whether to have more children -- at the time of the diagnosis, they had one daughter. They went on to expand their family with two more children: Nathaniel, now 11, and Jacqueline, 7, but gave up their dreams to try for a fourth child, Antoinette Brilliant said.
The couple's youngest children have learned they can't "play rough" with their father or rub against him the wrong way because they could hurt him. Their older daughter, Anna, 13, is old enough to recall when her father wasn't in as much pain as he is now.
"All family members live with it, not just the person in pain," Antoinette Brilliant said.
When the couple vacationed at Walt Disney World in 2001 and in 2005, Brilliant missed out on roller-coaster rides and other experiences he once enjoyed.
"If it is 80 degrees during the day and drops to 60 degrees overnight, his foot will start throbbing immensely," Anna said.
When describing a recent snowstorm, Anna said, "When we all woke to the beautiful snow, my dad had already been in pain due to the pending weather change. I swear my dad can predict the weather!"
While RSDS is not genetic, the family also had a scare when Anna was a fourth-grader about four years ago and began to develop similar painful symptoms when she sprained her ankle during a physical fitness test in gym class. Once Anna thought the ankle healed, she resumed her usual activities of ice skating and other sports.
"I ran around at recess and played softball. This unfortunately made my ankle worse," Anna said. "So I went to three more doctors in New Jersey and New York. They all said that I had nerve damage, but it might be something more. I had to stop skating. I couldn't participate in gym the whole third marking period and wasn't allowed to run around anymore."
Anna then saw Dr. Alyssa Lebel, an anesthesiologist and neurologist at the Boston Children's Hospital in Massachusetts, who confirmed the youngster only had peripheral nerve damage and not RSDS. Anna then had physical therapy three times a week for about 18 weeks. Then, for about another year, she had physical therapy once a week. Today, she can enjoy physical activities again but knows her father isn't as fortunate.
In helping other families cope with these and other changes, the family attends group support sessions monthly at Somerset Medical Center in Somerville. The sessions, "Living With RSDS," help the family share experiences with others who have been diagnosed with the disorder. About 50 members throughout Central Jersey attend the support sessions.
In the fall, the group took its efforts a step further and planted about 200 flower bulbs in pots, then sold the plants to various Central Jersey medical offices to raise awareness about RSDS. The group raised about $2,000 im various fundraising efforts to help other families with the disorder get the services they need.
"I am living with RSDS, even though I don't have it," Antoinette Brilliant said. "I've been through everything with my husband. It gave us a different perspective on what's important in life."
Brilliant said that for those who think they might have RSDS, early diagnosis is critical. His advice to those who have been diagnosed: "Don't give up and keep going. That's very important because I can see the difference with people with positive attitudes and those who don't have positive attitudes."
Stephen Brilliant, who was diagnosed in 1997, and his wife, Antoinette, said a major challenge was deciding whether to have more children -- at the time of the diagnosis, they had one daughter. They went on to expand their family with two more children: Nathaniel, now 11, and Jacqueline, 7, but gave up their dreams to try for a fourth child, Antoinette Brilliant said.
The couple's youngest children have learned they can't "play rough" with their father or rub against him the wrong way because they could hurt him. Their older daughter, Anna, 13, is old enough to recall when her father wasn't in as much pain as he is now.
"All family members live with it, not just the person in pain," Antoinette Brilliant said.
When the couple vacationed at Walt Disney World in 2001 and in 2005, Brilliant missed out on roller-coaster rides and other experiences he once enjoyed.
"If it is 80 degrees during the day and drops to 60 degrees overnight, his foot will start throbbing immensely," Anna said.
When describing a recent snowstorm, Anna said, "When we all woke to the beautiful snow, my dad had already been in pain due to the pending weather change. I swear my dad can predict the weather!"
While RSDS is not genetic, the family also had a scare when Anna was a fourth-grader about four years ago and began to develop similar painful symptoms when she sprained her ankle during a physical fitness test in gym class. Once Anna thought the ankle healed, she resumed her usual activities of ice skating and other sports.
"I ran around at recess and played softball. This unfortunately made my ankle worse," Anna said. "So I went to three more doctors in New Jersey and New York. They all said that I had nerve damage, but it might be something more. I had to stop skating. I couldn't participate in gym the whole third marking period and wasn't allowed to run around anymore."
Anna then saw Dr. Alyssa Lebel, an anesthesiologist and neurologist at the Boston Children's Hospital in Massachusetts, who confirmed the youngster only had peripheral nerve damage and not RSDS. Anna then had physical therapy three times a week for about 18 weeks. Then, for about another year, she had physical therapy once a week. Today, she can enjoy physical activities again but knows her father isn't as fortunate.
In helping other families cope with these and other changes, the family attends group support sessions monthly at Somerset Medical Center in Somerville. The sessions, "Living With RSDS," help the family share experiences with others who have been diagnosed with the disorder. About 50 members throughout Central Jersey attend the support sessions.
In the fall, the group took its efforts a step further and planted about 200 flower bulbs in pots, then sold the plants to various Central Jersey medical offices to raise awareness about RSDS. The group raised about $2,000 im various fundraising efforts to help other families with the disorder get the services they need.
"I am living with RSDS, even though I don't have it," Antoinette Brilliant said. "I've been through everything with my husband. It gave us a different perspective on what's important in life."
Brilliant said that for those who think they might have RSDS, early diagnosis is critical. His advice to those who have been diagnosed: "Don't give up and keep going. That's very important because I can see the difference with people with positive attitudes and those who don't have positive attitudes."
An intense Physical Therapy story...
Kara Loree broke down on a Friday, 11 days into pain boot camp.
The tub step-ins did it.
They're tough. With an occupational therapist timing her, Kara had to step in and out of a bathtub as often as she could in one minute. And she had to beat her own record: 37.
That morning, on the 11th step-in, the 15-year-old Oregon City girl tripped and crumpled.
"I can't," Kara said, gasping.
Take a moment, therapist Cyndy Coughlin told her. Breathe.
In late October, Legacy Emanuel Children's Hospital admitted Kara to a new program designed to cure young patients with certain debilitating, chronic pain -- or at least teach them to cope. Doctors bill the program, one of a handful of such nationwide, as medicine with a tough-love twist: To help her, Kara's medical team would make her hurt more than she had since constant, excruciating foot pain started in September.
Rule No. 1: Unless her doctor asked, she wasn't allowed to whimper a word about her pain.
Kara leaned her head against the shower wall. Tears streamed down her cheeks, and her shoulders heaved as she sobbed.
"Everybody has a time," Coughlin said gently, "when they need to stop and take a break and start over again."
"No," Kara said, her voice rising defiantly from its usual soft pitch.
"I am not doing it.
"I am not doing it.
"I am not doing it! And I really don't like you!"
Kara's pain seemed to come out of nowhere.
She hadn't injured her right foot. It wasn't infected. She hadn't even slept on it funny.
Yet, from the Saturday the pain started, Kara said, her foot felt as if an elephant were crushing it. When anything touched it, drops of water in the shower or the soft swipe of a towel, her foot felt as if it were being pounded with a spiked hammer.
Kara's mother took her straight to her doctor.
Lisa Loree is a registered nurse. She and the doctor thought Kara's pain might be linked to granuloma annulare, a common skin condition that periodically caused bumpy breakouts on the girl's feet. The doctor biopsied the bumps, prescribed the painkiller Vicodin and sent Kara home, advising she use crutches.
An artistic sort who sings and writes poetry, Kara decorated her drab new crutches with glow-in-the-dark puff paint and hobbled on her custom sticks to Gladstone High School, where she's a sophomore.
Two days later, Kara phoned her mother from school, weeping. Pain screamed through her foot. She asked her mom to come get her.
In a hospital emergency room that day, doctors tried to calm Kara's pain with morphine and Dilaudid, a narcotic analgesic. Neither helped.
Lisa Loree remembers her daughter pleading, "Mom, can't they just make me unconscious?"
Pain is complicated, but in essence: Receptors on the skin trigger electrical impulses that travel to the spinal cord. There, pain signals can be blocked, enhanced or changed before they move to the brain, where chemicals called neurotransmitters combine to produce pain.
It can feel as quick as a pinprick, as achy as arthritis or as sharp and burning as the condition a rheumatologist diagnosed in Kara: complex regional pain syndrome, type I, or CRPS.
Doctors figure an abnormal reflex in Kara's spinal cord might have caused blood vessels to constrict, causing pain. When Kara's foot hurt, she stopped using it. The result was poor circulation, which caused more pain.
Research suggests that hormones, stress and emotions play a role in CRPS. The human nervous system continues to develop into the early 20s; hormonal, cognitive and psychological changes during puberty might affect adolescents' vulnerability to pain.
Adults can get CRPS, too. Much about the ailment remains unknown -- including how many people have it -- but doctors say one thing is certain: The pain is real, not imagined.
Kara's pain was stuck in a bad loop. It wouldn't turn off.
Kara checked into the hospital Oct. 29. Her father, Derek Loree, followed doctors' orders: He took away her crutches.
Kara knew she'd miss weeks of school, choir rehearsals, her friends, parents and 17-year-old brother, Colin. She'd have to skip several "Horde Nights," as Fridays are called in the Loree home, where up to a dozen of Kara's and Colin's pals gather for pizza, games and sleepovers.
But the foot pain had spread to her right knee.
Doing dishes and vacuuming fell unmissed off her chore list. But the pain, she said, kept her from the things she loves. Like many youths who develop CRPS, Kara is driven -- good at everything and a year ahead in math. She dropped that class because the pain exhausted her. At choir practice, she had to sit instead of stand. She couldn't bowl with her church group or shop with friends.
Rail thin at 5 feet 4 and 106 pounds, she'd lost weight, saying it was too hard to get to the kitchen to fix food.
Some days, her mother recalled, Kara would cry for hours, saying, "Mama, make it stop. Mama, make it better." All Lisa Loree could do was hold her hand and say, "Hang in there."
So when the rheumatologist referred her to Emanuel's hard-core pediatric pain program -- a physically intense approach based on the work of Dr. David Sherry, a Philadelphia physician who has helped more than 1,000 children with similar problems -- Kara agreed. She wanted her life back.
That first morning in the hospital, though, she was petrified.
"All I know," Kara said, tears welling, "is I'm gonna get hurt."
When she tried to put a shoe on the foot that hadn't worn one in a month, Kara panicked. Hyperventilating and crying the second morning in the hospital, she dialed her mother.
Don't call me, call your nurse, her mother advised. After all, the key to the program is teaching patients to solve their own problems.
At 9 a.m., when Michelle Swift, a physical therapist, arrived at room N3509 to collect Kara, a brown paper bag sat on the teen's bedside table. Kara's nurse had told her to breathe into the bag to quell her panic.
Her tone kind but firm, Swift insisted that Kara put on her shoes.
Kara fingered a medallion on a chain around her neck, a gift from her mother. Imprinted in it was one word:
Courage.
She pursed her lips, slipped into her ratty old Asics and stood. Limping slowly, Kara followed Swift out of the pediatric unit and into a stairwell leading to the therapy gyms.
If Rule No. 1 was no pain talk, then Rule No. 2 was no elevator. And more: Do everything the doctors, physical, occupational and psychological therapists ask. Take responsibility for improving. If an exercise is timed, always beat the previous time. If it's repetition, always beat the count. If it hurts, tough it out. Don't follow the rules, and you're out.
"What's the difference," Swift asked Kara, "between a physical therapist and a terrorist?
"You can negotiate with a terrorist."
A smile slipped across Kara's face. Swift's, too.
Walk like a duck, Swift instructed.
Kara crouched, waddled down a hall, turned and waddled back.
She squeezed her eyes shut and covered her face with her hands. The duck walk had worked Kara's knees and toes, her most painful parts.
Swift handed her a box of tissues and gave Kara a minute to compose herself.
Scuttle like a crab. Move like an inchworm. Hop like a frog.
If one day feels like the next for any hospital patient, it felt doubly so for Kara. Day after day, therapists asked her to repeat exercises so they could chart her progress.
She rode a bicycle, walked a treadmill and hopped on a trampoline. She maneuvered through obstacle courses, balanced on tippy boards, and when she limped quickly down a long hall, Swift told her that -- believe it or not -- she'd run that course soon.
"Ready? Go!" Swift said, and Kara did pushups, her hands on a mat and her knees on a chair. After 16, she stopped.
"I can't," Kara said, huffing.
"You can," Swift said. "Do you need to sit for a minute?"
"Can we do this tomorrow?" Kara asked.
"No," Swift said.
The push-pull between therapists and patient would become routine as Kara's motivation and emotions boiled and chilled. Her body and brain would find new ways to respond to pain signals, but the treatment came with its own stresses. Being away from home, school and friends so long wore on Kara.
During five- and six-hour days therapists distracted Kara with word games or personal questions -- anything to make her think about something besides pain. Repeatedly, they reminded her of her goal: to be able to do everything a healthy teen could. Achieving that was up to her.
Her creamy complexion flushed with exertion, Kara got back into position. Swift resumed counting pushups. "That's 20 . . . 25. There's 30. Last 10, girl, you can do it."
Swift punched a stopwatch.
"Nice job," she said.
Kara sank to the floor, crying.
"It's not all gonna be torture," Swift said. "I promise."
Auburn hair flying, Kara sprinted down a hall one week after she'd hopped into Emanuel on crutches.
A smile stretched from one side of her face to the other -- and that wasn't the only thing looking good. When she removed her shoes and socks, Kara's right foot looked as pink as a piglet, not the bone-white shade of the week before. For the first time in weeks, blood circulated properly to her toes.
That afternoon, Swift put Kara through her paces: jump rope; crunches; lunges; jumping jacks. Kara completed them without complaint, and a surprise followed.
That first Monday in November, the sky shone a sapphire blue. Drifts of maple leaves turned the sidewalk on North Graham Street into a celebrity-worthy red carpet.
The two pushed open a hospital door and stepped outside.
"Sunshine!" Kara cried. She kicked her feet through the leaves and sucked in fresh air.
Her goal, Swift told Kara, was to walk with a steady, even gait -- like a normal teen -- down the steep hill.
Kara did.
Two blocks below, Swift suggested they race back.
Arms and legs pumping, Kara reached out and touched a pole at the top of the hill.
"I won," she said.
Desensitization was the worst, and several times each day Kara required the tactile therapy designed to retrain her pain response.
Therapists massaged Kara's foot. Or they asked her to submerge it in hot water, then ice water. Often, she ran a plastic brush across her toes and arches. To anyone else, it might have felt less like torture and more like a pampering pedicure.
On her 10th morning, desensitization meant walking barefoot in the dewy grass, and it pushed her over the edge. More than an hour later, Katie Harpster found Kara in a corner of the gym, her angular frame curled into a tight ball. She'd spent the lunch break sobbing.
"Kara, c'mon," said Harpster, an occupational therapist. "Let's go for a walk and a talk."
The next day, Kara's mood bounced back.
The day after that, she threw her, "I'm-not-doing-it" tantrum over the bathtub step-ins.
Neither the highs nor lows surprised Dr. Steve Janselewitz, the pediatric physical medicine and rehabilitation specialist who directed Kara's care team. Since he and Emanuel's Dr. Mark Shih started the pain program early this year, they've watched about half a dozen children ride pain and mood swings similar to Kara's.
"It's kind of nice to see them break down while they're here," said Janselewitz, "because then we can get them through that, and they can say: 'Hey, I can do this.' At home, they don't necessarily have that support."
On her 19th and last day in the hospital, Kara and Linda Krausse, a physical therapist, charged across a sky bridge and ducked into a stairwell.
Kara had plenty on her mind. Her team of therapists, doctors, a psychologist, teacher and social worker had armed her with coping strategies and a home exercise program she'd need to follow faithfully. Her foot and knee still hurt, but she could deal with it. She could run and jump and planned to glide around the Lloyd Center's ice rink that weekend.
In a few weeks or months, Janselewitz predicted, Kara's pain would subside, then disappear, as it typically does for children who can endure the treatment program.
In the stairwell, Krausse told Kara that together they'd run four stories up, then four down. Four times.
"You've come a long way, Kara," Krausse said.
"I have," Kara replied.
"That must feel good."
"You have no idea," Kara said, "how good it feels
The tub step-ins did it.
They're tough. With an occupational therapist timing her, Kara had to step in and out of a bathtub as often as she could in one minute. And she had to beat her own record: 37.
That morning, on the 11th step-in, the 15-year-old Oregon City girl tripped and crumpled.
"I can't," Kara said, gasping.
Take a moment, therapist Cyndy Coughlin told her. Breathe.
In late October, Legacy Emanuel Children's Hospital admitted Kara to a new program designed to cure young patients with certain debilitating, chronic pain -- or at least teach them to cope. Doctors bill the program, one of a handful of such nationwide, as medicine with a tough-love twist: To help her, Kara's medical team would make her hurt more than she had since constant, excruciating foot pain started in September.
Rule No. 1: Unless her doctor asked, she wasn't allowed to whimper a word about her pain.
Kara leaned her head against the shower wall. Tears streamed down her cheeks, and her shoulders heaved as she sobbed.
"Everybody has a time," Coughlin said gently, "when they need to stop and take a break and start over again."
"No," Kara said, her voice rising defiantly from its usual soft pitch.
"I am not doing it.
"I am not doing it.
"I am not doing it! And I really don't like you!"
Kara's pain seemed to come out of nowhere.
She hadn't injured her right foot. It wasn't infected. She hadn't even slept on it funny.
Yet, from the Saturday the pain started, Kara said, her foot felt as if an elephant were crushing it. When anything touched it, drops of water in the shower or the soft swipe of a towel, her foot felt as if it were being pounded with a spiked hammer.
Kara's mother took her straight to her doctor.
Lisa Loree is a registered nurse. She and the doctor thought Kara's pain might be linked to granuloma annulare, a common skin condition that periodically caused bumpy breakouts on the girl's feet. The doctor biopsied the bumps, prescribed the painkiller Vicodin and sent Kara home, advising she use crutches.
An artistic sort who sings and writes poetry, Kara decorated her drab new crutches with glow-in-the-dark puff paint and hobbled on her custom sticks to Gladstone High School, where she's a sophomore.
Two days later, Kara phoned her mother from school, weeping. Pain screamed through her foot. She asked her mom to come get her.
In a hospital emergency room that day, doctors tried to calm Kara's pain with morphine and Dilaudid, a narcotic analgesic. Neither helped.
Lisa Loree remembers her daughter pleading, "Mom, can't they just make me unconscious?"
Pain is complicated, but in essence: Receptors on the skin trigger electrical impulses that travel to the spinal cord. There, pain signals can be blocked, enhanced or changed before they move to the brain, where chemicals called neurotransmitters combine to produce pain.
It can feel as quick as a pinprick, as achy as arthritis or as sharp and burning as the condition a rheumatologist diagnosed in Kara: complex regional pain syndrome, type I, or CRPS.
Doctors figure an abnormal reflex in Kara's spinal cord might have caused blood vessels to constrict, causing pain. When Kara's foot hurt, she stopped using it. The result was poor circulation, which caused more pain.
Research suggests that hormones, stress and emotions play a role in CRPS. The human nervous system continues to develop into the early 20s; hormonal, cognitive and psychological changes during puberty might affect adolescents' vulnerability to pain.
Adults can get CRPS, too. Much about the ailment remains unknown -- including how many people have it -- but doctors say one thing is certain: The pain is real, not imagined.
Kara's pain was stuck in a bad loop. It wouldn't turn off.
Kara checked into the hospital Oct. 29. Her father, Derek Loree, followed doctors' orders: He took away her crutches.
Kara knew she'd miss weeks of school, choir rehearsals, her friends, parents and 17-year-old brother, Colin. She'd have to skip several "Horde Nights," as Fridays are called in the Loree home, where up to a dozen of Kara's and Colin's pals gather for pizza, games and sleepovers.
But the foot pain had spread to her right knee.
Doing dishes and vacuuming fell unmissed off her chore list. But the pain, she said, kept her from the things she loves. Like many youths who develop CRPS, Kara is driven -- good at everything and a year ahead in math. She dropped that class because the pain exhausted her. At choir practice, she had to sit instead of stand. She couldn't bowl with her church group or shop with friends.
Rail thin at 5 feet 4 and 106 pounds, she'd lost weight, saying it was too hard to get to the kitchen to fix food.
Some days, her mother recalled, Kara would cry for hours, saying, "Mama, make it stop. Mama, make it better." All Lisa Loree could do was hold her hand and say, "Hang in there."
So when the rheumatologist referred her to Emanuel's hard-core pediatric pain program -- a physically intense approach based on the work of Dr. David Sherry, a Philadelphia physician who has helped more than 1,000 children with similar problems -- Kara agreed. She wanted her life back.
That first morning in the hospital, though, she was petrified.
"All I know," Kara said, tears welling, "is I'm gonna get hurt."
When she tried to put a shoe on the foot that hadn't worn one in a month, Kara panicked. Hyperventilating and crying the second morning in the hospital, she dialed her mother.
Don't call me, call your nurse, her mother advised. After all, the key to the program is teaching patients to solve their own problems.
At 9 a.m., when Michelle Swift, a physical therapist, arrived at room N3509 to collect Kara, a brown paper bag sat on the teen's bedside table. Kara's nurse had told her to breathe into the bag to quell her panic.
Her tone kind but firm, Swift insisted that Kara put on her shoes.
Kara fingered a medallion on a chain around her neck, a gift from her mother. Imprinted in it was one word:
Courage.
She pursed her lips, slipped into her ratty old Asics and stood. Limping slowly, Kara followed Swift out of the pediatric unit and into a stairwell leading to the therapy gyms.
If Rule No. 1 was no pain talk, then Rule No. 2 was no elevator. And more: Do everything the doctors, physical, occupational and psychological therapists ask. Take responsibility for improving. If an exercise is timed, always beat the previous time. If it's repetition, always beat the count. If it hurts, tough it out. Don't follow the rules, and you're out.
"What's the difference," Swift asked Kara, "between a physical therapist and a terrorist?
"You can negotiate with a terrorist."
A smile slipped across Kara's face. Swift's, too.
Walk like a duck, Swift instructed.
Kara crouched, waddled down a hall, turned and waddled back.
She squeezed her eyes shut and covered her face with her hands. The duck walk had worked Kara's knees and toes, her most painful parts.
Swift handed her a box of tissues and gave Kara a minute to compose herself.
Scuttle like a crab. Move like an inchworm. Hop like a frog.
If one day feels like the next for any hospital patient, it felt doubly so for Kara. Day after day, therapists asked her to repeat exercises so they could chart her progress.
She rode a bicycle, walked a treadmill and hopped on a trampoline. She maneuvered through obstacle courses, balanced on tippy boards, and when she limped quickly down a long hall, Swift told her that -- believe it or not -- she'd run that course soon.
"Ready? Go!" Swift said, and Kara did pushups, her hands on a mat and her knees on a chair. After 16, she stopped.
"I can't," Kara said, huffing.
"You can," Swift said. "Do you need to sit for a minute?"
"Can we do this tomorrow?" Kara asked.
"No," Swift said.
The push-pull between therapists and patient would become routine as Kara's motivation and emotions boiled and chilled. Her body and brain would find new ways to respond to pain signals, but the treatment came with its own stresses. Being away from home, school and friends so long wore on Kara.
During five- and six-hour days therapists distracted Kara with word games or personal questions -- anything to make her think about something besides pain. Repeatedly, they reminded her of her goal: to be able to do everything a healthy teen could. Achieving that was up to her.
Her creamy complexion flushed with exertion, Kara got back into position. Swift resumed counting pushups. "That's 20 . . . 25. There's 30. Last 10, girl, you can do it."
Swift punched a stopwatch.
"Nice job," she said.
Kara sank to the floor, crying.
"It's not all gonna be torture," Swift said. "I promise."
Auburn hair flying, Kara sprinted down a hall one week after she'd hopped into Emanuel on crutches.
A smile stretched from one side of her face to the other -- and that wasn't the only thing looking good. When she removed her shoes and socks, Kara's right foot looked as pink as a piglet, not the bone-white shade of the week before. For the first time in weeks, blood circulated properly to her toes.
That afternoon, Swift put Kara through her paces: jump rope; crunches; lunges; jumping jacks. Kara completed them without complaint, and a surprise followed.
That first Monday in November, the sky shone a sapphire blue. Drifts of maple leaves turned the sidewalk on North Graham Street into a celebrity-worthy red carpet.
The two pushed open a hospital door and stepped outside.
"Sunshine!" Kara cried. She kicked her feet through the leaves and sucked in fresh air.
Her goal, Swift told Kara, was to walk with a steady, even gait -- like a normal teen -- down the steep hill.
Kara did.
Two blocks below, Swift suggested they race back.
Arms and legs pumping, Kara reached out and touched a pole at the top of the hill.
"I won," she said.
Desensitization was the worst, and several times each day Kara required the tactile therapy designed to retrain her pain response.
Therapists massaged Kara's foot. Or they asked her to submerge it in hot water, then ice water. Often, she ran a plastic brush across her toes and arches. To anyone else, it might have felt less like torture and more like a pampering pedicure.
On her 10th morning, desensitization meant walking barefoot in the dewy grass, and it pushed her over the edge. More than an hour later, Katie Harpster found Kara in a corner of the gym, her angular frame curled into a tight ball. She'd spent the lunch break sobbing.
"Kara, c'mon," said Harpster, an occupational therapist. "Let's go for a walk and a talk."
The next day, Kara's mood bounced back.
The day after that, she threw her, "I'm-not-doing-it" tantrum over the bathtub step-ins.
Neither the highs nor lows surprised Dr. Steve Janselewitz, the pediatric physical medicine and rehabilitation specialist who directed Kara's care team. Since he and Emanuel's Dr. Mark Shih started the pain program early this year, they've watched about half a dozen children ride pain and mood swings similar to Kara's.
"It's kind of nice to see them break down while they're here," said Janselewitz, "because then we can get them through that, and they can say: 'Hey, I can do this.' At home, they don't necessarily have that support."
On her 19th and last day in the hospital, Kara and Linda Krausse, a physical therapist, charged across a sky bridge and ducked into a stairwell.
Kara had plenty on her mind. Her team of therapists, doctors, a psychologist, teacher and social worker had armed her with coping strategies and a home exercise program she'd need to follow faithfully. Her foot and knee still hurt, but she could deal with it. She could run and jump and planned to glide around the Lloyd Center's ice rink that weekend.
In a few weeks or months, Janselewitz predicted, Kara's pain would subside, then disappear, as it typically does for children who can endure the treatment program.
In the stairwell, Krausse told Kara that together they'd run four stories up, then four down. Four times.
"You've come a long way, Kara," Krausse said.
"I have," Kara replied.
"That must feel good."
"You have no idea," Kara said, "how good it feels
Doctors believe CRPS is no longer in your head...
Doctors Believe CRPS Is No Longer In Your HeadBaffling Illness A Very Real Problem, Say ExpertsAug 18, 2006 12:20 am US/Eastern(CBS) NEW YORK Pain has overtaken Vince Hudson's life.He said it's spread from a bruise on his foot to both legs and his shoulder."I'm no longer employed," Hudson said. "I spent a year without any income at all. It impacts relationships. I'm just not the same person I was."Vince is among the more than one million Americans suffering from complex regional pain syndrome or CRPS."I don't think there's any pain in medicine that's worse than this. You can't be touched," said CRPS expert, Dr. Robert Schwartzman.Last year, "American Idol" judge Paula Abdul brought attention to this obscure disease when she admitted she suffers from the debilitating symptoms of CRPS. Like a lot of victims, she was told the pain was all in her head. But Dr. Schwartzman said new research proves the syndrome is real."One hundred percent," he said. "There's no question about this anymore. Zero."CRPS has baffled doctors since the Civil War. It happens when there's an injury to a nerve that causes the entire nervous system to behave erratically.A minor foot injury at gymnastics practice triggered agonizing chronic pain for 11-year-old Rachel Heisler. Now any noise or vibration can bring her to tears."The microwave beeping, the phone ringing. So everyday noise would make it worse," she said.Keith Orsini runs an adult support group for CRPS."That sensitivity to touch sometimes means you can't be hugged by your children," Orsini said. "The slightest kiss from your husband, kiss from your girlfriend can cause extreme pain."While there's no cure, Dr Schwartzman said pain medications and some treatments do show some benefits."If it got caught early and people understood this, I think we could dramatically stop its devastation," Schwartzman said.New research shows that some people may be genetically predisposed to CRPS, which would explain why some people get it while others don't.
Why do females feel more pain than males do?
Why do females feel more pain than males do?Study after study shows it's true, but scientists cannot explain what's to blame for this gender gapANNE MCILROYFrom Monday's Globe and MailThe pain starts after a trivial injury, a scraped knee or even a paper cut, but endures or intensifies long after the original wound has healed.Even a light breeze or the touch of a bed sheet can be unbearable for patients with the rare disorder known as complex regional pain syndrome, which affects far more girls than boys, and significantly more women than men.No one knows why, says Steve Brown, a doctor who treats chronic pain at the Hospital for Sick Children in Toronto. He sees seven or eight girls with the disorder for every boy with it."I don't think anyone has a good answer."The question is part of a larger mystery, one that intrigues researchers as they work toward a more profound understanding of the biology of pain. Why is it that females feel pain more than males?Study after study -- most of them done in adults -- show this is the case. Women yank their arms out of icy or hot water faster than men, or report significantly higher levels of pain than men from the same mild electric shock. The difference isn't huge, but it is significant.This might come as a surprise to many women, especially those who have been through labour.But scientists have moved beyond documenting the phenomenon to explaining it. They are now zeroing in on different genes, pain mechanisms and pathways in women and men, and on the role that sex hormones play.One day, they hope to be able to tailor pain relief for men and women - blue pills and pink pills. Their work could lead to new treatments for chronic pain conditions, such as complex regional pain syndrome, that affect more women then men. In adults, the literature suggests two women get it for every man.It is unclear how early the differences begin. There are studies that suggest girls are more sensitive to pain than boys are, although the research is not as conclusive as in adults, says Patricia McGrath at the Hospital for Sick Children. She and Dr. Brown are part of research project studying a number of chronic pain conditions -- including complex regional pain syndrome and headaches -- that seem to affect girls more than boys.By adulthood, experts say, almost every chronic pain condition is more prevalent in women than in men.Hormones are part of the explanation, says Serge Marchand, a researcher at the University of Sherbrooke. Female rats have more intense reactions than males to the same painful stimulus, like an electric shock. But if you remove their ovaries and testes, so that they don't produce sex hormones, then males and females respond the same way.Why?Dr. Marchard thinks hormones might affect the body's built-in ability to mute pain. Both mice and humans have systems that regulate pain, natural opioids, cannaboids and other neurotransmitters. They allow people to function despite injury or illness.He asked female volunteers to come to his lab three times in a single month, so he could test the effectiveness of their natural pain-killing systems at different times in their menstrual cycle.First, he administered a mild electrical shock on their left legs, and asked them to rate the pain on a scale of one to 100. Then he asked them to put their right arms into water chilled to five degrees Celsius.The cold triggered natural pain control. Previous experiments have shown that when volunteers are then shocked a second time, they report significantly less pain. The body's response to their freezing arm makes their leg less sensitive to being zapped.But as Dr. Marchard discovered, and reported at a conference in Oregon earlier this year, there were big difference in natural pain control, depending on where a woman was in her monthly cycle.When women were ovulating, and had high levels of estrogen, they reported as much as 70 per cent less pain after the second shock. But if they were menstruating, and had low levels of estrogen, they reported as little as 30 per cent less pain.Men, however, don't have these kinds of ups downs in pain modulation, although there is evidence that testosterone, a male hormone, plays a role in pain tolerance.Hormones, however, are only part of the pain picture. Our genes might also explain why women feel pain more than men do.A number of researchers have found evidence that men and women control pain in different ways. Male mice, they have discovered, have a natural pain-control system that females don't have. The key to the system is a protein called GIRK2, which plays a role in communication between cells.Jeffrey Mogil, at McGill University in Montreal, has found that a gene that causes red hair and fair skin also plays a role in how some women -- but not men -- respond to painkillers.This means the neural circuits involved in inhibiting pain are different in men and women, he says."The idea was pretty radical even 12 years ago. It is really starting to be believed now."There is no big picture yet, just hints that genes involved in pain for one sex aren't important in the other."It is not too hard to convince yourself that there may have been separate adaptive pressures that would have led to the development of different circuits," he says.Men would have benefited from a system that allowed them to deal with traumatic pain to the skin, whereas women would have benefited more from a system that helped them endure more visceral pain, like childbirth.It is fun to speculate, says Dr. Mogil, but these kinds of theories are impossible to prove.Dr. Marchand has come up with one to explain why women would have evolved to have the most natural pain control when they are ovulating, which is not painful, and the least when they are menstruating, which can involve pain.It seems unfair. But for many animals, he says, sex is painful. So it makes sense to have a system that provides maximum pain control when intercourse is most likely. "Otherwise they would never have offspring."Maybe we inherited this system, he says.
Ketamine coma might offer hope to people with severe RSD...
ISSUE: 1/2008 VOLUME: 34:01 Relief for Worst RSD May Lie With Ketamine Coma By David Rosenfeld LAS VEGAS—For the most severe cases of reflex sympathetic dystrophy (RSD), inducing a five-day coma may be the only effective treatment. The method is akin to rebooting the central nervous systems of patients whose nerve cells have gone haywire. The FDA has yet to approve coma therapy, which is induced by administering large bolus injections of ketamine and midazolam at up to 50 times the normal dose. But that has not stopped U.S. doctors from pioneering the use of a “ketamine coma” in American patients treated at hospitals in Germany and Mexico. For the better part of four years, Robert Schwartzman, MD, chairman of the Department of Neurology at Drexel University College of Medicine in Philadelphia, and colleagues have been studying the effects of ketamine treatment, including induced comas, in patients with RSD. Their results suggest that the coma therapy may provide long-term and perhaps permanent relief in as many as half of the most severe cases. Ketamine first won FDA approval in 1970 as an anesthetic. It quickly became known on the street as “Special K,” a powerful hallucinogen similar to LSD and PCP. Clinicians in the United States can legally give the drug to patients with RSD—also known as complex regional pain syndrome (CRPS) type I—who are under conscious sedation. In this group, relief typically lasts no more than six months, Dr. Schwartzman said. Potent Agent Ketamine is the most potent clinically available inhibitor of N-methyl-D-aspartate (NMDA) receptors. These receptors permit the transfer of electrical signals between neurons in the brain and the spinal column. Studies support the idea that RSD results from a dynamic change in the physiology and structure of central pain neurons mediated by NMDA receptors. When these receptors malfunction, enzymatic and metabolic cascades occur in pain cells, and the degree of pain is magnified out of proportion to the physical injury causing it. In a study of infusions of low-dose ketamine (Pain Physician 2005;8:175-179), Dr. Schwartzman and colleagues found that a critical factor in central sensitization seems to be the release of magnesium on the NMDA receptor, with an influx of calcium and the initiation of intracellular cascades. As an NMDA antagonist, ketamine blocks central sensitization. Drugs such as dextromethorphan, amantadine and memantine (Namenda, Forest Pharmaceuticals) also could be used, but they appear to have a low potential for blocking the sensitization process. Ketamine has long been known to be able to prevent RSD/CRPS following surgery, said Scott Reuben, MD, professor of anesthesiology and pain medicine at Tufts University School of Medicine in Boston and director of pain management at Baystate Medical Center in Springfield, Mass. “If it [ketamine] can prevent CRPS, the thought was, ‘can we use it to treat it?’ ” said Dr. Reuben, who serves as an adviser to the Mexico study. “This is just the stepping stone. Unfortunately, all we have are case reports and retrospective studies. We need prospective studies.” Only the Worst Patients RSD affects between 200,000 and 1.2 million Americans, according to the Reflex Sympathetic Dystrophy Association. The disorder develops without any apparent explanation in 1% to 2% of patients with fractures and in 2% to 5% of patients with peripheral nerve injuries. The RSD group claims that roughly 50,000 new cases develop each year. For the Mexican and German research, doctors chose patients with the most severe cases of RSD who had tried everything—including blocks and hyperbaric chambers—for their pain. Frustrated physicians from around the world refer patients to Dr. Schwartzman. “I only see the worst patients,” said Dr. Schwartzman, who took on the challenge of RSD after being unable to cure one of his patients with the condition. “Some have gone through up to 100 doctors.” Failure in More Than Half Dr. Schwartzman has sent a total of 38 patients to Germany for treatment with the ketamine coma, which was discovered serendipitously by Ralph-Thomas Kiefer, MD, and Peter Rohr, MD, in Tübingen. The two physicians had induced a coma in a patient with RSD and severe head trauma. When the patient awoke, the pain syndrome had vanished. The five-day coma is induced with large bolus injections of ketamine (1-1.5 mg/kg) and midazolam (2.5-7.5 mg). The coma is maintained with infusions of ketamine (3-7 mg/kg per hour) and midazolam (0.15-0.3 mg/kg per hour), which are tapered toward the end. Every patient in whom a coma is induced does well initially, Dr. Schwartzman said, but the pain returns in 55% to 60% of cases. Still, of the 38 patients treated in Germany, at least 12 have had minimal or no pain for more than five years. Three of the 12 required occasional subanesthetic boosters of ketamine. “We’re blocking the RSD,” Dr. Schwartzman said. “The maintaining thing is still there. If you don’t block the maintaining problem, the same molecular genetic cascade occurs.” A study of the full ketamine coma in the patients treated in Germany will soon appear in Pain Medicine. Of the 20 patients featured in the study who underwent the therapy, 16 experienced complete remission lasting at least six months. “While the trial suggests improvements in pain reductions,” the researchers concluded, “a randomized controlled study will be necessary to prove its efficacy.” The coma’s side effects—precipitous weight loss, sleep disruption, anxiety, weakness and the usual complications of critical care medicine—are potentially serious. The bottom line, Dr. Schwartzman said, is that “the procedure has proven to be very safe but clearly has inherent risks.” South of the Border A study in Mexico has started, with a protocol similar to that used in the German study; patients are sent to the San José Technological Hospital, which is affiliated with the Tec de Monterrey School of Medicine in Monterrey, Mexico, a few hours’ drive from the Texas border. Patients pay about $20,000 for the treatment, which is not covered by insurance. Leading the Mexican medical team is Fernando Cantœ Flores, MD, an anesthesiologist and specialist in pain management who was trained at the University of Texas. The study was originally approved in the United States by the institutional review boards of the University of South Florida and Tampa General Hospital, but the FDA refused to grant an exemption to its international new drug application. Rather than embark on a process that would likely cost $3 million and delay treatment for their patients, the study was moved to Mexico. A review board in Monterrey also approved the study. So far, eight patients have been treated in Mexico. The main difference from the German study is that pain thresholds are measured with a force gauge. The German study relied on self-reporting. Low-Dose Conscious Sedation A less dramatic treatment option for severe cases of RSD is a subanesthetic infusion of low-dose ketamine (10-30 mg per hour titrated according to side effects such as amnesia, blurred vision and vomiting). Dr. Schwartzman has performed close to 200 of these—about one each week for the past four years—at Hahnemann University Hospital in Philadelphia. The treatment costs about $10,000, and insurance companies will not pay for it. Dr. Schwartzman estimated that he performs 95% of all such procedures in the country. He also treats about 10 outpatients per week with lower doses in his clinic. The infusions succeed in 70% to 80% of cases. But even in the most responsive patients, pain typically returns after approximately six months. A study published in Pain Medicine (2004;5:263-275) found similar results. A two-hour infusion of low-dose ketamine can also be used to manage RSD or as a booster after treatment with the coma. Pretreatment with 0.2 mg of I.V. glycopyrrolate (the only other drug needed) is administered along with a ketamine drip at 100 mg per hour, supplemented with 5- to 40-mg I.V. bolus injections of ketamine. An average adult will require a total of 400 to 600 mg of ketamine over a two-hour period. For patients with the most intractable cases of RSD, the full coma treatment may still be the only hope. In a study published online in Pain Medicine in July 2007 (online early article), Dr. Schwartzman and his German colleagues found that an “awake” version of the ketamine infusion at higher doses (50-500 mg per day) over a 10-day period in four patients with extreme RSD did not relieve pain. Cause for Optimism Shannon Stocker, MD, an Orlando, Fla., RSD patient, underwent coma therapy in Mexico. Dr. Stocker said the concern she felt about going into the treatment was “overwhelmed by a desire to get better because the pain was so bad it was worth all the risk. The burning pain was constant. But when there was anything like raindrops, it felt like ice picks stabbing me.” The ketamine coma may be the key to curing other conditions directly related to either RSD or similar nerve dysfunction. As a result of her RSD, Dr. Stocker had skin ulcers all over her arms, which began to clear up while she was still in the coma. Jim Broatch, executive director of the RSD Syndrome Association, called ketamine therapy “promising” but added that more data are needed. “We’re saying the jury is still out.” Dr. Schwartzman has now written more than 60 articles on RSD and spoken about the disorder at more than 100 conferences, including the 2007 annual meeting of the American Academy of Pain Management, at which he delivered the keynote address. The success of the various ketamine protocols has made him optimistic about the prospects for patients with previously intractable RSD. “It’s wonderful to be able to successfully treat someone in severe pain,” he said. “That’s why you go to medical school.”
Saturday, 26 April 2008
Paula Abdul suffers from a rare chronic pain disorder...
Paula Abdul found her purpose on 'Idol'
NEW YORK (AP) — Paula Abdul says she didn't figure out her purpose in life until she became a judge on Fox network's American Idol.
"I knew since I was a little girl that I had this profound way of touching people. My purpose is bringing out everybody's best and being that cheerleader to other people's success," the 44-year-old singer-dancer tells OK! magazine in its latest issue.
"Being a judge on American Idol overshadows being a Grammy Award winner and selling millions of records," she says.
Abdul has been diagnosed with reflex sympathetic dystrophy (RSD), a chronic neurological disorder that causes severe pain.
"I have four titanium plates in my neck. I've had 14 surgeries over the years. I had an operation the same evening as the first season finale of American Idol," she says. "It can come and go at any time, but I no longer have the intense nerve pain that is associated with RSD, thank God."
Abdul — who says she was hit by a drunk driver in 1987 and injured in an emergency plane landing in the early '90s — says she is treated with anti-inflammatory medications and has massage and acupuncture treatments for her pain.
"If I appear exhausted on television, it's because I am!" she says. "I have a lot of sleepless nights because I'm in so much pain. I was taking far more medication on earlier seasons (of 'American Idol'), and nobody said anything. I try to say something and I stumble, and that's what people have picked up on. I'm not polished."
When asked how she responds to claims that her behavior during Idol is sometimes bizarre, Abdul replies:
"I'm sick of it. I've never been drunk. I don't do recreational drugs. It's defamation of character."
The choreographer and former Laker girl also says: "I'm a warrior. I'm not the best dancer, and I'm certainly not the best singer, but I am an entire package of a great performer."
NEW YORK (AP) — Paula Abdul says she didn't figure out her purpose in life until she became a judge on Fox network's American Idol.
"I knew since I was a little girl that I had this profound way of touching people. My purpose is bringing out everybody's best and being that cheerleader to other people's success," the 44-year-old singer-dancer tells OK! magazine in its latest issue.
"Being a judge on American Idol overshadows being a Grammy Award winner and selling millions of records," she says.
Abdul has been diagnosed with reflex sympathetic dystrophy (RSD), a chronic neurological disorder that causes severe pain.
"I have four titanium plates in my neck. I've had 14 surgeries over the years. I had an operation the same evening as the first season finale of American Idol," she says. "It can come and go at any time, but I no longer have the intense nerve pain that is associated with RSD, thank God."
Abdul — who says she was hit by a drunk driver in 1987 and injured in an emergency plane landing in the early '90s — says she is treated with anti-inflammatory medications and has massage and acupuncture treatments for her pain.
"If I appear exhausted on television, it's because I am!" she says. "I have a lot of sleepless nights because I'm in so much pain. I was taking far more medication on earlier seasons (of 'American Idol'), and nobody said anything. I try to say something and I stumble, and that's what people have picked up on. I'm not polished."
When asked how she responds to claims that her behavior during Idol is sometimes bizarre, Abdul replies:
"I'm sick of it. I've never been drunk. I don't do recreational drugs. It's defamation of character."
The choreographer and former Laker girl also says: "I'm a warrior. I'm not the best dancer, and I'm certainly not the best singer, but I am an entire package of a great performer."
My family and friends often tell me that to say that I have RSD (which is the worse pain anyone in the World can have according to the McGill pain scale) I am really positive - I personally think that without a positive attitude we have nothing. I suffer a lot yes, but I also realise that I am soooo much luckier than other people in this World, even though sometimes it might not feel like it.
Its my goal to make people realise how lucky they are and not to dwell on the bad things in life - please just take 2 minutes to think about the things you can do, not the things you can't do! I find that it helps a lot!
I am not going to lie to you - I have really bad days where I get that depressed that I wish I could just curl up and die, but I think everyone with RSD has those days. When I have those days I take a deep breath and think about how lucky I am (even though it might not feel like it at that very moment)
I try my best to help other people who are going through the same type of disease that I am going through, and I have got a lot of credit from that!! That is what makes me realise that I can do something, even if I can't walk or go to school! In fact, I got some flowers from someone in America to say thank you soo much for everything that I have done for them and also to wish me a quick recovery - that really ment a lot to me!!
When I am older I want to be either a Psychologist or a Pain Nurse, because I want to continue to help other people.
Please NEVER, give up - we can beat this even though it might not feel like it!
Its my goal to make people realise how lucky they are and not to dwell on the bad things in life - please just take 2 minutes to think about the things you can do, not the things you can't do! I find that it helps a lot!
I am not going to lie to you - I have really bad days where I get that depressed that I wish I could just curl up and die, but I think everyone with RSD has those days. When I have those days I take a deep breath and think about how lucky I am (even though it might not feel like it at that very moment)
I try my best to help other people who are going through the same type of disease that I am going through, and I have got a lot of credit from that!! That is what makes me realise that I can do something, even if I can't walk or go to school! In fact, I got some flowers from someone in America to say thank you soo much for everything that I have done for them and also to wish me a quick recovery - that really ment a lot to me!!
When I am older I want to be either a Psychologist or a Pain Nurse, because I want to continue to help other people.
Please NEVER, give up - we can beat this even though it might not feel like it!
Inspirational video of a girl who overcome RSD...
Hi again guys,
I found this video of a girl named Alissa, who overcame RSD by an intense Physical therapy program. It makes me realise that there IS hope for everyone even thought it doesn't feel like it at times.
Hope you enjoy it...
RSD video Part 1.
http://www.youtube.com/watch?v=JOTUzQWbmYw
A song that the girl made whilst in hopsital going through the pain...
http://www.youtube.com/watch?v=kAVsIf_3e_k
These words really stuck out for me:
Stay Strong, a special thanks to all of my family - Because RSD doesn't just affect the person with RSD but the whole family too!!
Pain free hugs,
Alison
I found this video of a girl named Alissa, who overcame RSD by an intense Physical therapy program. It makes me realise that there IS hope for everyone even thought it doesn't feel like it at times.
Hope you enjoy it...
RSD video Part 1.
http://www.youtube.com/watch?v=JOTUzQWbmYw
A song that the girl made whilst in hopsital going through the pain...
http://www.youtube.com/watch?v=kAVsIf_3e_k
These words really stuck out for me:
Stay Strong, a special thanks to all of my family - Because RSD doesn't just affect the person with RSD but the whole family too!!
Pain free hugs,
Alison
Thursdays Hospital Appointment
Hi everyone.
I went to see my PM doctor on Thursday, me and my mom suggested using Chlonazepam to try and get the spasms under control but my doctor as decided against this - basically because some of the medications I have already tried are in the same group and they didn't work and my doctor is also worried about the long term side effects that I could have due to my age etc.
My doctor has put me on a Beta Blocker called Propranolol, which I started on Thursday. So far it doesn't seem to have helped but my dr did say that it can take up to 4 weeks to start working. We are upping the dosage over the next few days. I have been feeling a bit sick and dizzy, but my doctor says this is normal and the try and cope with it unless it gets really bad.
I go back to the hospital on May 15th to try a Gaiter (knee brace) to see if it will try and stop some of the spasms and to also see if it will stabilise me enough to walk on my own.
I had some Physical Therapy on Thursday and it hurt a lot!! My Physical therapist was pushing down on my hip to try and get the spasms to stop but unfortunatley they didn't!! I could feel the muscles in my hip getting really tight! I have to do these excersises at home 3 times a day.
Heres just hoping and praying that these meds work. If they don't my PM doctor is going to speak to the Neurologists attached to his pain team to see if they can suggest something. Who'd have thought that a simple toenail removal could cause so many problems?? But unfortunatley thats RSD!!
I hope you are all OK.
I went to see my PM doctor on Thursday, me and my mom suggested using Chlonazepam to try and get the spasms under control but my doctor as decided against this - basically because some of the medications I have already tried are in the same group and they didn't work and my doctor is also worried about the long term side effects that I could have due to my age etc.
My doctor has put me on a Beta Blocker called Propranolol, which I started on Thursday. So far it doesn't seem to have helped but my dr did say that it can take up to 4 weeks to start working. We are upping the dosage over the next few days. I have been feeling a bit sick and dizzy, but my doctor says this is normal and the try and cope with it unless it gets really bad.
I go back to the hospital on May 15th to try a Gaiter (knee brace) to see if it will try and stop some of the spasms and to also see if it will stabilise me enough to walk on my own.
I had some Physical Therapy on Thursday and it hurt a lot!! My Physical therapist was pushing down on my hip to try and get the spasms to stop but unfortunatley they didn't!! I could feel the muscles in my hip getting really tight! I have to do these excersises at home 3 times a day.
Heres just hoping and praying that these meds work. If they don't my PM doctor is going to speak to the Neurologists attached to his pain team to see if they can suggest something. Who'd have thought that a simple toenail removal could cause so many problems?? But unfortunatley thats RSD!!
I hope you are all OK.
Tuesday, 22 April 2008
Got to go in hospital on Thursday...
Hi everyone,
My mom got a call from my PM dr yesterday - he wants me to go in hospital on Thursday to discuss treatment options to try and get the muscle spasms under control.
He also wants me to see another PM dr from Leeds (England) to see if he/she has seen movment disorders like this before in RSD as my PM dr hasn't seen anything like it before! It is really embarrassing when I go out in public (even if it is just to the hospital) because people stare at my leg!!!
My mom mentioned the Chlonazepam (sp?) that Wendy on RSD Support told us to try but he wont let me try it as it as been known to react with Lyrica and tramadol which I am on and it can also cause fits and cardiac arrests in young people!
I will keep you all updated and I hope you are all having the best day possible!!
Alison
My mom got a call from my PM dr yesterday - he wants me to go in hospital on Thursday to discuss treatment options to try and get the muscle spasms under control.
He also wants me to see another PM dr from Leeds (England) to see if he/she has seen movment disorders like this before in RSD as my PM dr hasn't seen anything like it before! It is really embarrassing when I go out in public (even if it is just to the hospital) because people stare at my leg!!!
My mom mentioned the Chlonazepam (sp?) that Wendy on RSD Support told us to try but he wont let me try it as it as been known to react with Lyrica and tramadol which I am on and it can also cause fits and cardiac arrests in young people!
I will keep you all updated and I hope you are all having the best day possible!!
Alison
Friday, 18 April 2008
Video of the RSD and movement disorder in my leg...
Hi everyone,
This is a video of my leg, as you can see I have got what my PM doctor says is "Severe Dystonia/movement disorders as well as RSD"
http://uk.youtube.com/watch?v=qE_OwuilOew
I hope everyone finds it useful and that it helps some people.
Thanks
Alison
This is a video of my leg, as you can see I have got what my PM doctor says is "Severe Dystonia/movement disorders as well as RSD"
http://uk.youtube.com/watch?v=qE_OwuilOew
I hope everyone finds it useful and that it helps some people.
Thanks
Alison
Thursday, 17 April 2008
Getting comfortable with RSD - A good read for RSD patients!!
So its time you started getting in tune with your body. What does that mean? Pain is a signal for you to pay attention, tune into the here an now. Try to live in the moment and realize that your body needs you to pay attention!
RSD is a debilitating illness and it plays havoc with you body. There are many alternatives to the way in which we can respond to what is going on. So let's get comfortable, as best you can.
Learn to become more aware of what is truly taking place within your own body. Keeping a diary/pain journal is a good guide for you to follow and look back at. Most of us can't begin to remember all of the different things that we experience daily from this chronic condition. So start writing and reading your own journal, after all it's your story too. This will be a great asset to you when you go to your doctor and therapy appointments.
Now you are becoming aware of the variety of movements, positions and activities that disrupt your well being. Learning how to cope with them will take time and patience. Your central nervous system is in a state of terror and it's on a heightened state of alert. Each of us will respond uniquely to the medicines and treatments we attempt. Remember the level of sensitivity will be traumatized and alerted greatly.
Our bodies are totally interconnected, like fine tuned computers. But RSD has our systems going haywire. Let s start to use some common remedies and consider how we can react.
For instance if any part of your body is cold, has a spasm/ache, or is stiff and tight putting it into some warm water, can help change the way its feels. When I travel I take a hot water bottle fill it up with boiling water and it keeps me warm and cozy for hours. You can fill the bottle about half way and squeeze the extra air out before you close it up; this allows the bottle to be positioned more comfortably around your body.
Soaking in a bath with Epson Salts can often relax you and give you some relief as well. I also use a moist Thermophore electric heating pad, on many different areas of my body. Heat is very soothing and can help loosen up stiff, tightened muscles. A paraffin wax machine can also be used for hands and feet, as this is also a good way to warm up some stiff/tight extremities.
You're sensitive to the touch of objects around you. So realize that you need to compromise with your own body. Using pillows or very soft pieces of foam can help you position yourself for comfort. There are many stores and places on the internet where you can purchase a variety of items that can bring you some well needed comfort.
Sometimes we are used to certain things and we do not realize that it's all about changing the pattern. Start to employ different items for your body needs. Take them with you wherever you go, after all RSD knows no boundaries!
The clothes that we wear are made of many different textures of fabric. Try to find out what feels good on your body! I have discovered that with the extreme sensitivity from RSD, I am more comfortable in softer fabrics. Surround yourself with clothing, towels and bedding that you can feel comfortable with. Part of your daily responses to the environment in which you live can be adjusted, by many simple changes. Realize that your body will communicate with you if you let it.
Learning to live and get some what comfortable with RSD will require your continued involvement and attention. Becoming aware and tuning into your bodies signals will help you on your path to healing.
RSD is a debilitating illness and it plays havoc with you body. There are many alternatives to the way in which we can respond to what is going on. So let's get comfortable, as best you can.
Learn to become more aware of what is truly taking place within your own body. Keeping a diary/pain journal is a good guide for you to follow and look back at. Most of us can't begin to remember all of the different things that we experience daily from this chronic condition. So start writing and reading your own journal, after all it's your story too. This will be a great asset to you when you go to your doctor and therapy appointments.
Now you are becoming aware of the variety of movements, positions and activities that disrupt your well being. Learning how to cope with them will take time and patience. Your central nervous system is in a state of terror and it's on a heightened state of alert. Each of us will respond uniquely to the medicines and treatments we attempt. Remember the level of sensitivity will be traumatized and alerted greatly.
Our bodies are totally interconnected, like fine tuned computers. But RSD has our systems going haywire. Let s start to use some common remedies and consider how we can react.
For instance if any part of your body is cold, has a spasm/ache, or is stiff and tight putting it into some warm water, can help change the way its feels. When I travel I take a hot water bottle fill it up with boiling water and it keeps me warm and cozy for hours. You can fill the bottle about half way and squeeze the extra air out before you close it up; this allows the bottle to be positioned more comfortably around your body.
Soaking in a bath with Epson Salts can often relax you and give you some relief as well. I also use a moist Thermophore electric heating pad, on many different areas of my body. Heat is very soothing and can help loosen up stiff, tightened muscles. A paraffin wax machine can also be used for hands and feet, as this is also a good way to warm up some stiff/tight extremities.
You're sensitive to the touch of objects around you. So realize that you need to compromise with your own body. Using pillows or very soft pieces of foam can help you position yourself for comfort. There are many stores and places on the internet where you can purchase a variety of items that can bring you some well needed comfort.
Sometimes we are used to certain things and we do not realize that it's all about changing the pattern. Start to employ different items for your body needs. Take them with you wherever you go, after all RSD knows no boundaries!
The clothes that we wear are made of many different textures of fabric. Try to find out what feels good on your body! I have discovered that with the extreme sensitivity from RSD, I am more comfortable in softer fabrics. Surround yourself with clothing, towels and bedding that you can feel comfortable with. Part of your daily responses to the environment in which you live can be adjusted, by many simple changes. Realize that your body will communicate with you if you let it.
Learning to live and get some what comfortable with RSD will require your continued involvement and attention. Becoming aware and tuning into your bodies signals will help you on your path to healing.
Sunday, 13 April 2008
RSD - Survival...
When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us. ~ Hellen Keller
Have that one person you can trust and go to whenever your haing a really bad day, find that one person who will listen to you when you feel as it there is nothing that will ever help
Don't let pain control your life
Don't let people push you beyond your limits.
Don't let uninformed people get you down. ~ Melis
Keep living your life no matter what happens. you can't let RSD get the best of you; you just have to keep fighting it and some day you'll overcome it! even if it's one tiny achievement at a time, they all add up, and before you know it, you'll be a new person: stronger, wiser, and a fighter! ~Kerri
Stay informed and inform others. People will never understand what we/you are ging through if we dont tell them. And, it really does feel better if more people have a faint understanding of how I feel every day ~Kasie
Find something to distract you. It helps if you do not think about the pain ~Carrie
For me, its my pets that are helping me survive RSD. I don't know what I would do without them. They are always here for me, they know when I'm having a bad day, and they know to stay away from certain parts of my body that hurt too much for them to touch me. Also I use heat packs on the areas that aren't too sensitive. It really helps the muscle spasms I get. And I tell myself everyday when I don't want to feel this anymore that one day this won't be as bad because there WILL BE some sort of treatment that will help me. ~Tabitha
Use a rice pillow! You put it in the microwave and then use it like a heating pad. They're easy to make, you just sew it up with a piece of fabric and put raw rice in it. It's nice for flare ups in your hands because then you can wrap it around them
Active rest is proving to be a key thing for me. My worst flare ups are in my foot and on bad days I walk with a cane instead of not walking. Also, for anyone who has RSD in one or both feet, make sure your shoes provide good support and are comfortable, otherwise it's just gonna make things worse. If you have flat feet make sure you are using inserts. you can get them at drugstores.
Make time to do stuff that's relaxing! On days when the pain in my hands aren't too bad I play my guitar. Also, journaling has proved to be a lifesaver for me.
Consider a short haircut if you have pain in your hands. I used to have hair that was several inches below my shoulders, but the pain levels in my hands would get so high that dealing with it was this huge chore. Now I try to keep my hair at about chin length. This means I get to hold the hairdryer for a shorter period of time, and washing and styling it is alot easier and alot less painful. ~ Kati
Have that one person you can trust and go to whenever your haing a really bad day, find that one person who will listen to you when you feel as it there is nothing that will ever help
Don't let pain control your life
Don't let people push you beyond your limits.
Don't let uninformed people get you down. ~ Melis
Keep living your life no matter what happens. you can't let RSD get the best of you; you just have to keep fighting it and some day you'll overcome it! even if it's one tiny achievement at a time, they all add up, and before you know it, you'll be a new person: stronger, wiser, and a fighter! ~Kerri
Stay informed and inform others. People will never understand what we/you are ging through if we dont tell them. And, it really does feel better if more people have a faint understanding of how I feel every day ~Kasie
Find something to distract you. It helps if you do not think about the pain ~Carrie
For me, its my pets that are helping me survive RSD. I don't know what I would do without them. They are always here for me, they know when I'm having a bad day, and they know to stay away from certain parts of my body that hurt too much for them to touch me. Also I use heat packs on the areas that aren't too sensitive. It really helps the muscle spasms I get. And I tell myself everyday when I don't want to feel this anymore that one day this won't be as bad because there WILL BE some sort of treatment that will help me. ~Tabitha
Use a rice pillow! You put it in the microwave and then use it like a heating pad. They're easy to make, you just sew it up with a piece of fabric and put raw rice in it. It's nice for flare ups in your hands because then you can wrap it around them
Active rest is proving to be a key thing for me. My worst flare ups are in my foot and on bad days I walk with a cane instead of not walking. Also, for anyone who has RSD in one or both feet, make sure your shoes provide good support and are comfortable, otherwise it's just gonna make things worse. If you have flat feet make sure you are using inserts. you can get them at drugstores.
Make time to do stuff that's relaxing! On days when the pain in my hands aren't too bad I play my guitar. Also, journaling has proved to be a lifesaver for me.
Consider a short haircut if you have pain in your hands. I used to have hair that was several inches below my shoulders, but the pain levels in my hands would get so high that dealing with it was this huge chore. Now I try to keep my hair at about chin length. This means I get to hold the hairdryer for a shorter period of time, and washing and styling it is alot easier and alot less painful. ~ Kati
RSD/CRPS - Study finds nerve damage in previously mysterious chronic pain syndrome!
I found this online a few weeks ago and I found it very interesting!!
http://www.docguide.com/news/content.nsf/news/852571020057CCF685257107005273F6?Open&id=48DDE4A73E09A969852568880078C249&count=10
http://www.docguide.com/news/content.nsf/news/852571020057CCF685257107005273F6?Open&id=48DDE4A73E09A969852568880078C249&count=10
RSD Poems....
RSD? What does it mean?
It causes so much pain I would like to scream.
You wake in the morning and all the day thru.
It’s constant, constant pain and nothing you can do.
In later stages…they say there is no cure.
We Pray they find one. That’s for sure!
It’s hard to deal with all that goes on.
Being in pain from dusk ‘til dawn.
Anger, depression, mood swings, I could go on and on.
Then some doctors think. It’s all a Con.
Drugs, drugs and more drugs …you must take.
Starting from the moment, we awake. No one really understands what we have.
Too bad there’s not a magic salve.
So to all of you, who know how I feel, The ones who KNOW the Pain is real.
We’ll stick together through thick and thin.
Hopefully someday in the end we will win.
Guess we just have to wait and see and pray they find a CURE for YOU and ME!
It’s not in our heads. The Pain is there.
Please Doc, show consideration, show YOU care.
Until there’s a cure, we all must cope.
So DOCTORS….PLEASE LISTEN TO US, IT'S NOT FOR THE DOPE!!!!!
I always smile I always put on a happy face. Why can’t they see that it’s not me??Why can’t they see what’s inside me??I hate this disgusting feeling.This feeling of not feeling.I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!Don’t they see this is not my smile??Don’t they see my breaking heart??My eyes used to shine.Now they are gray and dull.Have they ever known me?Or do they just refuse to see?I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!I try to look back on my life for hope.I try to tell myself this is just one more hill to climb.It will make me better.It will make me stronger. Everyday I dream about dancing.Everyday I dream abut being me.The more I try my past just fades.I wish that I could just go back .Why can’t I just go back??Can they not see the difference now??Can they not see this smile isn’t even real??I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!With every treatment that fails…With every doctor who can’t help…With every friend who turns their back on me…My heart becomes a little colder.My hope becomes a little smaller.Isn’t that why they are here?Can’t they understand I need them now more than ever.No I guess they can’t…Because of this stupid happy faceThey don’t hear my empty voice when I tell them I’m fine. They don’t want to know if I’m hurting. They don’t have the time for.I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!I know life is full of challenges. But please, can’t this be enough.Don’t you know I’m only thirteen.I need to live my childhood dreams…I’m sick of being sick.I’m sick of saying I’m fine.I’m sick of painting on this face every single time. Do they not see…How empty my eyes are?Do they not hear…How tired my voice is?Or do they just not know this sound?Do they not know the sound of a dying soulMy life goes by in a haze.A haze of weeks running together.A haze of uncountable let downs.A haze of numbness and lying. I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!I know the truth now.They did used to know me.Now they just refuse to see.I’ve been sucked into this lie, Of telling myself I’ll be fine,Tomorrow is another day…Maybe then I’ll be okay.But deep down I know..How tomorrow will really go…It is one more day of fake smiles It is one more day or them living in denial. I will tell myself I can no longer be a part of that…And I have to face the truth before I get hurt.Then I will realize I can’t hurt myself if I don’t feel. The feeling of not feeling will returnAnd I will get out of bed and paint on my happy face,To help cover up my screaming soul.I will paint on my happy face.To help numb the tearing pain of my heart closing.I will paint on my happy face Just like I did yesterday...
It causes so much pain I would like to scream.
You wake in the morning and all the day thru.
It’s constant, constant pain and nothing you can do.
In later stages…they say there is no cure.
We Pray they find one. That’s for sure!
It’s hard to deal with all that goes on.
Being in pain from dusk ‘til dawn.
Anger, depression, mood swings, I could go on and on.
Then some doctors think. It’s all a Con.
Drugs, drugs and more drugs …you must take.
Starting from the moment, we awake. No one really understands what we have.
Too bad there’s not a magic salve.
So to all of you, who know how I feel, The ones who KNOW the Pain is real.
We’ll stick together through thick and thin.
Hopefully someday in the end we will win.
Guess we just have to wait and see and pray they find a CURE for YOU and ME!
It’s not in our heads. The Pain is there.
Please Doc, show consideration, show YOU care.
Until there’s a cure, we all must cope.
So DOCTORS….PLEASE LISTEN TO US, IT'S NOT FOR THE DOPE!!!!!
I always smile I always put on a happy face. Why can’t they see that it’s not me??Why can’t they see what’s inside me??I hate this disgusting feeling.This feeling of not feeling.I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!Don’t they see this is not my smile??Don’t they see my breaking heart??My eyes used to shine.Now they are gray and dull.Have they ever known me?Or do they just refuse to see?I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!I try to look back on my life for hope.I try to tell myself this is just one more hill to climb.It will make me better.It will make me stronger. Everyday I dream about dancing.Everyday I dream abut being me.The more I try my past just fades.I wish that I could just go back .Why can’t I just go back??Can they not see the difference now??Can they not see this smile isn’t even real??I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!With every treatment that fails…With every doctor who can’t help…With every friend who turns their back on me…My heart becomes a little colder.My hope becomes a little smaller.Isn’t that why they are here?Can’t they understand I need them now more than ever.No I guess they can’t…Because of this stupid happy faceThey don’t hear my empty voice when I tell them I’m fine. They don’t want to know if I’m hurting. They don’t have the time for.I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!I know life is full of challenges. But please, can’t this be enough.Don’t you know I’m only thirteen.I need to live my childhood dreams…I’m sick of being sick.I’m sick of saying I’m fine.I’m sick of painting on this face every single time. Do they not see…How empty my eyes are?Do they not hear…How tired my voice is?Or do they just not know this sound?Do they not know the sound of a dying soulMy life goes by in a haze.A haze of weeks running together.A haze of uncountable let downs.A haze of numbness and lying. I need to scream.I’m not okay!!!I need to scream.I can’t do this today!!!I know the truth now.They did used to know me.Now they just refuse to see.I’ve been sucked into this lie, Of telling myself I’ll be fine,Tomorrow is another day…Maybe then I’ll be okay.But deep down I know..How tomorrow will really go…It is one more day of fake smiles It is one more day or them living in denial. I will tell myself I can no longer be a part of that…And I have to face the truth before I get hurt.Then I will realize I can’t hurt myself if I don’t feel. The feeling of not feeling will returnAnd I will get out of bed and paint on my happy face,To help cover up my screaming soul.I will paint on my happy face.To help numb the tearing pain of my heart closing.I will paint on my happy face Just like I did yesterday...
Friday, 11 April 2008
Tips for doctors....
In all fairness to the doctors, I have tried to look at RSD not from my perspective, but from a doctor's perspective and I have come with a few things that might help out doctors.Here are some ideas for any physician who has a pediatric patient with RSD.
First of all, I would not ever abandon my patient. If I honestly could not do anything else for the person, then I would make sure that I would be able to make a referral to another doctor who would be able to help.
I would remember to follow up with the patient and I would not make excuses or forget. I would not procrastinate treating the patient, because RSD does not wait.
I would believe my patient's pain and would not act like the person is exaggerating the pain because when it comes down to it, with RSD, very few people overreact to the pain. RSD really, really hurts!!!
I would not keep poking on the RSD affected extremity if the patient says they have allodynia/hyperalgesia. (I have learned that this is just a tip of common sense. J LOL )
And most of all, I would never act like the patient is not trying to get better. No normal kid or teenager is going to want to be in horrible pain or on crutches/in a wheelchair for the rest of their lives.
First of all, I would not ever abandon my patient. If I honestly could not do anything else for the person, then I would make sure that I would be able to make a referral to another doctor who would be able to help.
I would remember to follow up with the patient and I would not make excuses or forget. I would not procrastinate treating the patient, because RSD does not wait.
I would believe my patient's pain and would not act like the person is exaggerating the pain because when it comes down to it, with RSD, very few people overreact to the pain. RSD really, really hurts!!!
I would not keep poking on the RSD affected extremity if the patient says they have allodynia/hyperalgesia. (I have learned that this is just a tip of common sense. J LOL )
And most of all, I would never act like the patient is not trying to get better. No normal kid or teenager is going to want to be in horrible pain or on crutches/in a wheelchair for the rest of their lives.
Tips for friends of an RSD patient
I have had two types of friends during RSD ― the type that has abandoned and ignored me and the type that has stuck with me through it all. The friends that have stayed with me have been able to make me laugh even when I was almost in tears and we have certainly made some lasting memories that I know none of us will ever forget. Now here are some suggestions on how to be a friend to an RSDer:
Refrain from thoughtless comments. I would not ask my friend why he/she is still not better or act like RSD is a vacation if the person has to miss school sometimes because of doctor appointments or bad pain days.
Just be a friend. I would not desert or ignore the person.
Listen. Most of the time, all the friend might want to do is talk to someone.
Ask my friend how he/she is feeling. This is a kind gesture and shows that I care.
Realize my friend's limitations. My friend may not be able to play basketball or go rollerblading, but might be able to do something less strenuous like swimming. I would talk to my friend to see what he/she is able to do.
Try to understand if he/she has to refuse an invitation and I would not take it personally. RSD pain can worsen quickly and my friend may be too exhausted to go to a movie or the mall.
Believe my friend's pain. I would not act like he/she is a hypochondriac.
Remember that my friend is still the same person, both before and after RSD. He/she still needs me as a friend and we can still have fun doing things together.
Refrain from thoughtless comments. I would not ask my friend why he/she is still not better or act like RSD is a vacation if the person has to miss school sometimes because of doctor appointments or bad pain days.
Just be a friend. I would not desert or ignore the person.
Listen. Most of the time, all the friend might want to do is talk to someone.
Ask my friend how he/she is feeling. This is a kind gesture and shows that I care.
Realize my friend's limitations. My friend may not be able to play basketball or go rollerblading, but might be able to do something less strenuous like swimming. I would talk to my friend to see what he/she is able to do.
Try to understand if he/she has to refuse an invitation and I would not take it personally. RSD pain can worsen quickly and my friend may be too exhausted to go to a movie or the mall.
Believe my friend's pain. I would not act like he/she is a hypochondriac.
Remember that my friend is still the same person, both before and after RSD. He/she still needs me as a friend and we can still have fun doing things together.
A letter to anyone without RSD.
To anyone without RSD:
Hello,
I do not know who will read this letter or who they might be. I do not even know if anyone will pay any attention to the contents of this letter, but if you read this, I ask that you try to read it carefully and understand it.
I am a teenager suffering with Reflex Sympathetic Dystrophy or as I call it, RSD. You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain matters. You see, I have learned that every child with RSD has a story almost exactly identical and if his or her name were omitted, the stories would not be able to differ a great deal. So I have chosen to remain anonymous, speaking for all of us kids in pain. You are welcome to print out this letter to give to a friend, family member, teacher, or even a medical professional to help them understand us a little better. I need to tell you several things, but first, I am going to tell you what it is like to be a teen living with RSD. If you can, please transport yourself to the RSD world for the next few minutes.
Everyday, the average teenager wakes up, gets dressed, goes to school, talks to friends, participates in sports and other activities, goes home, does homework, and then goes to sleep. However, the RSD teenager is not able to do these things. Everyday, the teen wakes up and the first sensation of the day is pain. The teen gets dressed slowly because clothes and shoes are such agony to pull on against the skin. School is a blur and the teen tiredly goes home since he or she can't participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside the teen's body. Pain wins....sleep loses.
Are you beginning to understand us yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misconceptions or misunderstandings....
RSD kids rarely look sick, maybe tired, but usually not sick. Please do not make comments such as, "But you look like you feel better!" When I feel better, I will say that I feel better. Also, remember that like any other teen, I want to look nice, I do not want to look sick.
I have also received remarks like these," Well, you can't be in too much pain if you're still smiling!" Have you ever been sick with a cold or flu? You are probably thinking about how grouchy and depressed you were in the five day span of that cold. However, most of us with RSD have been in pain seven days a week, almost 24 hours a day for weeks, months, or years. I cannot be depressed all the time. Quite frankly, I try to be positive and happy for my friends and family, even though there are times that I am not as upbeat as everyone assumes.
I would like you to understand that RSD is a neurological disorder, not a psychological disorder. Remember that while depression may occur after RSD and might hinder recovery, depression does not cause RSD. Also, being sad or depressed after the onset of RSD does not mean that any of us are crazy...wouldn't you be discouraged if you spent every day, every hour, and every minute in pain without ever knowing when or if you will recover?
Please do not expect me to act the same and think the same as I did before RSD. Constant pain can make me irritable and sometimes I can get frustrated easily. Meds can make me drowsy, dizzy, or might give me stomach aches and headaches. I might have to miss school sometimes for doctor appointments or physical therapy. When I do come back to school, I'm often tired and sick, so if I am unable to carry on a conversation or concentrate in class for a long period of time, please try not to get impatient with me.
Have you ever seen me walking? Or have you seen me with shoes and socks on? Please do not ask me absurd questions like," Does that hurt?" Of course, it hurts. It hurts so much sometimes that I don't think that I can bear the pain any more and I wish that I could just curl up and die. Please understand that I have to do things such as trying to wear a shoe or sock or walking to get even a little better ― and I know that I have to do these things ― but it is extremely painful due to my hypersensitivity and severe pain.
Please do not act like you understand everything about RSD because you do not. I don't mean to sound harsh, but reading an RSD brochure or looking through an RSD info site does not make you an expert in pain until you have experienced it. Unless you are an RSD'er, please do not try to keep on offering me recent advice or a "miracle cure." I understand that you want to help me, but only I know what helps me and what hurts me. Some things that might help other RSD kids will only hurt me and what might help me will only hurt them.
An RSD'er once said that sometimes with RSD, we have to take two steps back and one step forward. This statement holds a lot of truth to it. RSD is unpredictable and none of us who suffer with it ever know how we will feel from day to day. I think that this is probably the hardest thing for everyone to understand though, except for those of us who suffer with RSD. Everyone thinks that once we get on the road to recovery, we should stay there....but RSD differs greatly from a football injury or a ligament strain and we are going to have many setbacks. One day, I might be able to walk around a lot, whereas the next day I can barely get out of bed because the pain is so bad.
Please do not ever accuse an RSD'er of not wanting or not trying to get better. You are not with me all the time and you do not know how much I have tried and continue to try to get better. Small things, like trying to desensitize my skin and letting water from a shower flow over the RSD affected extremity or just laying a foot on the ground is an achievement for us, but of course no one ever sees that. They just want us to be able to jump up one day and be healed. Let me state once again: Don't ever accuse an RSD'er of not wanting or not trying to get better." You do not know the pain, the loneliness, the fear, or the nightmare that RSD is.
And please, what I really need is for you to try as much as possible to remain my friend and understand me. Please remember that it is still me inside this body filled with awful pain and I still like laughing, talking, and doing "normal" things. Please remember that I am still me even though I have RSD.
Hello,
I do not know who will read this letter or who they might be. I do not even know if anyone will pay any attention to the contents of this letter, but if you read this, I ask that you try to read it carefully and understand it.
I am a teenager suffering with Reflex Sympathetic Dystrophy or as I call it, RSD. You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain matters. You see, I have learned that every child with RSD has a story almost exactly identical and if his or her name were omitted, the stories would not be able to differ a great deal. So I have chosen to remain anonymous, speaking for all of us kids in pain. You are welcome to print out this letter to give to a friend, family member, teacher, or even a medical professional to help them understand us a little better. I need to tell you several things, but first, I am going to tell you what it is like to be a teen living with RSD. If you can, please transport yourself to the RSD world for the next few minutes.
Everyday, the average teenager wakes up, gets dressed, goes to school, talks to friends, participates in sports and other activities, goes home, does homework, and then goes to sleep. However, the RSD teenager is not able to do these things. Everyday, the teen wakes up and the first sensation of the day is pain. The teen gets dressed slowly because clothes and shoes are such agony to pull on against the skin. School is a blur and the teen tiredly goes home since he or she can't participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside the teen's body. Pain wins....sleep loses.
Are you beginning to understand us yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misconceptions or misunderstandings....
RSD kids rarely look sick, maybe tired, but usually not sick. Please do not make comments such as, "But you look like you feel better!" When I feel better, I will say that I feel better. Also, remember that like any other teen, I want to look nice, I do not want to look sick.
I have also received remarks like these," Well, you can't be in too much pain if you're still smiling!" Have you ever been sick with a cold or flu? You are probably thinking about how grouchy and depressed you were in the five day span of that cold. However, most of us with RSD have been in pain seven days a week, almost 24 hours a day for weeks, months, or years. I cannot be depressed all the time. Quite frankly, I try to be positive and happy for my friends and family, even though there are times that I am not as upbeat as everyone assumes.
I would like you to understand that RSD is a neurological disorder, not a psychological disorder. Remember that while depression may occur after RSD and might hinder recovery, depression does not cause RSD. Also, being sad or depressed after the onset of RSD does not mean that any of us are crazy...wouldn't you be discouraged if you spent every day, every hour, and every minute in pain without ever knowing when or if you will recover?
Please do not expect me to act the same and think the same as I did before RSD. Constant pain can make me irritable and sometimes I can get frustrated easily. Meds can make me drowsy, dizzy, or might give me stomach aches and headaches. I might have to miss school sometimes for doctor appointments or physical therapy. When I do come back to school, I'm often tired and sick, so if I am unable to carry on a conversation or concentrate in class for a long period of time, please try not to get impatient with me.
Have you ever seen me walking? Or have you seen me with shoes and socks on? Please do not ask me absurd questions like," Does that hurt?" Of course, it hurts. It hurts so much sometimes that I don't think that I can bear the pain any more and I wish that I could just curl up and die. Please understand that I have to do things such as trying to wear a shoe or sock or walking to get even a little better ― and I know that I have to do these things ― but it is extremely painful due to my hypersensitivity and severe pain.
Please do not act like you understand everything about RSD because you do not. I don't mean to sound harsh, but reading an RSD brochure or looking through an RSD info site does not make you an expert in pain until you have experienced it. Unless you are an RSD'er, please do not try to keep on offering me recent advice or a "miracle cure." I understand that you want to help me, but only I know what helps me and what hurts me. Some things that might help other RSD kids will only hurt me and what might help me will only hurt them.
An RSD'er once said that sometimes with RSD, we have to take two steps back and one step forward. This statement holds a lot of truth to it. RSD is unpredictable and none of us who suffer with it ever know how we will feel from day to day. I think that this is probably the hardest thing for everyone to understand though, except for those of us who suffer with RSD. Everyone thinks that once we get on the road to recovery, we should stay there....but RSD differs greatly from a football injury or a ligament strain and we are going to have many setbacks. One day, I might be able to walk around a lot, whereas the next day I can barely get out of bed because the pain is so bad.
Please do not ever accuse an RSD'er of not wanting or not trying to get better. You are not with me all the time and you do not know how much I have tried and continue to try to get better. Small things, like trying to desensitize my skin and letting water from a shower flow over the RSD affected extremity or just laying a foot on the ground is an achievement for us, but of course no one ever sees that. They just want us to be able to jump up one day and be healed. Let me state once again: Don't ever accuse an RSD'er of not wanting or not trying to get better." You do not know the pain, the loneliness, the fear, or the nightmare that RSD is.
And please, what I really need is for you to try as much as possible to remain my friend and understand me. Please remember that it is still me inside this body filled with awful pain and I still like laughing, talking, and doing "normal" things. Please remember that I am still me even though I have RSD.
"Time, why do you punish me?"
"The past has come and gone
The future is far away
Now only lasts for one second, one second..."
With this disease, it is absurdly easy to worry about the future, far and near. I catch myself worrying about how my pain will be in an hour, and I also catch myself worrying about how far my disease will progress by the end of the year. Will I be stuck in a wheelchair forever? That's an interesting question and one that not even the most brilliant of doctors can answer for me because THEY JUST DON'T KNOW. So, now what does one do with that information? Easy. She lives for today because that is all she has been promised.
With this disease, it is also extremely easy to look back on the past with nastalgia, before RSD shoved it's way into life. Begging and pleading for yesterday can take up a lot of an RSDers time and energy, but guess what? Yesterday is gone. I'm no longer able to go to karate lessons on a weekly basis, I have RSD, and the "old me" is gone. This is my life now. What does one do with this information? Easy. She accepts today and lives for it because that's all that has been promised.
Live for today!
A letter from your chronic condition and a reply. Sometimes you just have to laugh, otherwise you would cry!
To whom it may concern: Congratulations! You have been selected to be the host for (any chronic condition -- RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms -- and may even deal with several of them at the same time. --Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain -- it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repetoire of pain categories, so updates are to be expected. --Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes. --Extreme fatigue (Now remember, this is not just being "tired". We will suddenly "pull your plug", so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.) --Poor balance, lack of coordination. Let's just say you may walk or talk like you are drunk -- even if you haven't had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to understand what it is like to be drunk and to have a hangover. --Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them. In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition: The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs. Tthe ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back. The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average. The ability to play and run with your children like you did before. The ability to have a "normal" social life. The ability to accumulate sick days at work/ school to earn the perfect attendance bonus. As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available. Sincerely, Your chronic condition _________________________________________________________________ Dear My chronic condition: I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind -- you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that you have given me, things I never could have experienced had you not come to possess my body. You have given me: -- strengthened prayer life and increased dependence on His grace and strenth, rather than my own -- renewed friendship with strong, close, true friends. -- appreciation for every precious moment I am given. A gift that is sometimes lost on the "healthy". -- growth in character, perseverance, and hope. -- inspiration for to help others. -- more compassion for others who are suffering. -- better knowledge of my own body & health. -- a reason to eat more nutritiously and take care of myself. -- reasons to rest when I need it. You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others. Sincerely, ME Article written by Brandi Lasnick, © 2007[b][/b]
To whom it may concern: Congratulations! You have been selected to be the host for (any chronic condition -- RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms -- and may even deal with several of them at the same time. --Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain -- it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repetoire of pain categories, so updates are to be expected. --Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes. --Extreme fatigue (Now remember, this is not just being "tired". We will suddenly "pull your plug", so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.) --Poor balance, lack of coordination. Let's just say you may walk or talk like you are drunk -- even if you haven't had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to understand what it is like to be drunk and to have a hangover. --Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them. In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition: The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs. Tthe ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back. The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average. The ability to play and run with your children like you did before. The ability to have a "normal" social life. The ability to accumulate sick days at work/ school to earn the perfect attendance bonus. As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available. Sincerely, Your chronic condition _________________________________________________________________ Dear My chronic condition: I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind -- you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that you have given me, things I never could have experienced had you not come to possess my body. You have given me: -- strengthened prayer life and increased dependence on His grace and strenth, rather than my own -- renewed friendship with strong, close, true friends. -- appreciation for every precious moment I am given. A gift that is sometimes lost on the "healthy". -- growth in character, perseverance, and hope. -- inspiration for to help others. -- more compassion for others who are suffering. -- better knowledge of my own body & health. -- a reason to eat more nutritiously and take care of myself. -- reasons to rest when I need it. You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others. Sincerely, ME Article written by Brandi Lasnick, © 2007[b][/b]
Thursday, 10 April 2008
The grief cycle...
Grief is a multi-faceted response to loss, and it commonly focuses on the emotional although it also can have physical, cognitive and behavioral, amongst other, ramifications. When one thinks of grief, they often think of the loss of a loved one, but loss and grief can come in many different forms from the loss of a job to the loss of one's physical health. The fives stages of grief, denial, anger, bargaining, depression and acceptance, commonly referred to as the "grief cycle," are often universal to any type of loss.
The Grief Cycle
1-Denial-"This can't be happening to me." No crying. Not accepting or even acknowledging the loss.
2-Anger-"Why me?" The grieving person may then be furious at the person who inflicted the hurt or at the world for letting the loss happen. He/she may be angry with himself/herself for letting the event take place, even if the control is out of his/her hands.
3-Bargaining- Attempting to make deals with God or the universe to stop or change the loss. Begging, wishing, praying for what was lost to be given back.
4-Depression-Overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning the loss as well as the hopes, dreams and plans for the future. Feeling lack of control, feelings of numbness, or even suicidal ideations.
5-Acceptance- When the loss is accepted and not just beared quietly and regretfully. Finding the good that can come out of the pain of loss, finding comfort and healing. Our goals turn toward personal growth, and we become well-adjusted individuals, often thankful for what we have gained from the loss.
The Grief Cycle
1-Denial-"This can't be happening to me." No crying. Not accepting or even acknowledging the loss.
2-Anger-"Why me?" The grieving person may then be furious at the person who inflicted the hurt or at the world for letting the loss happen. He/she may be angry with himself/herself for letting the event take place, even if the control is out of his/her hands.
3-Bargaining- Attempting to make deals with God or the universe to stop or change the loss. Begging, wishing, praying for what was lost to be given back.
4-Depression-Overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning the loss as well as the hopes, dreams and plans for the future. Feeling lack of control, feelings of numbness, or even suicidal ideations.
5-Acceptance- When the loss is accepted and not just beared quietly and regretfully. Finding the good that can come out of the pain of loss, finding comfort and healing. Our goals turn toward personal growth, and we become well-adjusted individuals, often thankful for what we have gained from the loss.
Imagine RSD - for people who don't have RSD but want to try and understand what it feels like...
Friends, family, doctors etc often ask me what RSD feels like and I have often described it has petrol running through your veins. On Youtube I found this video, that explains how RSD/CRPS feels and I thought it might help people understand CRPS a bit better.
Hope it helps
http://www.youtube.com/watch?v=CNX33BOpWBA
Hope it helps
http://www.youtube.com/watch?v=CNX33BOpWBA
Inspirational quotes that help me through days that are tough...
These are some quotes that help me through days that are tough - and I thought they might help you too!!
There is NO cure for RSD, but there IS hope!
To the world you may be one person, but to one person you may be the world!
Life isn't about waiting for the storm to pass, it's about getting out there and dancing in the rain!
Let's change the invisible to the known, for when something is known and cared about research is done and treatments that work are found.
The longer I live, the more I realize the impact of attitude on my life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. I am convinced that life is 10% what happens to you and 90% how I react to it. And so it is with you....we are in charge of our attitudes."
“ . . . The pain of RSD is enough to drive anybody out of their mind but what I admire is the fact that RSD patients still keep their sanity. . . ”
"Make a vow right not that from this moment on you're not going towaste any more time feeling sorry for yourself and wallowing in self-pity over things you cannot change."
" Don't wait until everything is perfect before you decide to enjoyyour life. Learn to be content where you are, while you are on yourway to where you're going."
"When disappointment weights on you like a rock, you can either let itpress you down until you become discouraged or you can use it as astepping-stone to better things."
I have RSD, but it doesn't have ME!
"Courage ... doesn't always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tomorrow"
There is NO cure for RSD, but there IS hope!
To the world you may be one person, but to one person you may be the world!
Life isn't about waiting for the storm to pass, it's about getting out there and dancing in the rain!
Let's change the invisible to the known, for when something is known and cared about research is done and treatments that work are found.
The longer I live, the more I realize the impact of attitude on my life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. I am convinced that life is 10% what happens to you and 90% how I react to it. And so it is with you....we are in charge of our attitudes."
“ . . . The pain of RSD is enough to drive anybody out of their mind but what I admire is the fact that RSD patients still keep their sanity. . . ”
"Make a vow right not that from this moment on you're not going towaste any more time feeling sorry for yourself and wallowing in self-pity over things you cannot change."
" Don't wait until everything is perfect before you decide to enjoyyour life. Learn to be content where you are, while you are on yourway to where you're going."
"When disappointment weights on you like a rock, you can either let itpress you down until you become discouraged or you can use it as astepping-stone to better things."
I have RSD, but it doesn't have ME!
"Courage ... doesn't always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tomorrow"
I suffer a lot, yes....
I suffer a lot, yes, but I think nothing of it. This is my life, and I enjoy every day that I wake up, especially when I am still able to stand on my own even for 1 second... especially when RSD has not ravaged my entire body (you should see what this disease can do!!!!). But, my mum cries two tears, and I think the sky has fallen, and the world is about to end. I would rather suffer tremendously for the rest of my life than watch my parents and family shed one tear. I think it is because I know what it is like to suffer, and the thought of anyone else walking my (past) path of despair, more or less, is something my heart cannot take with ease.
All about RSD/CRPS...
Complex Regional Pain Syndrome (CRPS) is the term used to describe severe pain and swelling in one part of the body. CRPS usually affects the hands, feet, elbows or knees, but can affect any part of the body.
The pain may start after an injury, where the nerves have been damaged, or there may be no known cause for it to start. The pain usually gets gradually worse and may spread to other parts of the body.
There are two types of CRPS. Type 1 may not have any known cause. It used to be called Reflex Sympathetic Dystrophy (RSD), Sudecks Atrophy or Algodystrophy. Type 2 always follows an injury and used to be called causalgia.
CRPS is quite rare (an estimated 11,500 people in the UK have it) and half of all people that develop it recover within a few months.
The pain may start after an injury, where the nerves have been damaged, or there may be no known cause for it to start. The pain usually gets gradually worse and may spread to other parts of the body.
There are two types of CRPS. Type 1 may not have any known cause. It used to be called Reflex Sympathetic Dystrophy (RSD), Sudecks Atrophy or Algodystrophy. Type 2 always follows an injury and used to be called causalgia.
CRPS is quite rare (an estimated 11,500 people in the UK have it) and half of all people that develop it recover within a few months.
All about me!
Hello my name is Alison, I am 13 years old and I live in the UK (England)
18 months ago I was a very happy child, I had just moved to a new school and had made some awsome friends, but then on the 20th March 2007, my life changed drasticly.
I sprained my ankle falling down some steps at my mums work, my ankle was painful and swollen but I just thought it was a normal ankle sprain, but after 5 days of complete rest the pain and swelling got worse. My mum took me to the hospital where they x-rayed my ankle and told me that it was just a normal ankle sprain and that I had to rest it for 2 days and do gentle excersises. I did what I was told to do for 5 days but the pain still continued to get worse, so my mum took me back to the hospital where I was reffered to a Physical therapist thinking that I just needed some physiotherapy and that I would be running around again.
I had Phsyiotherapy for 3 and a half months and I made little progress, in fact I was getting worse, I now had colour changes and muscle spasms in my toes.
My mum knew that something wasn't right so she took me to another hospital, where the doctors were really nice and understanding. They admitted me into hospital and told me and my mum that they thought I had CRPS (Complex Regional Pain Syndrome) but to go a diagnosis I had to go to another hospital that deals with CRPS/RSD.
The next day I was transferred to another hospital where I was diagnosed with CRPS type 1. My Pain Management Doctor did a nerve block the next day but unfortunatley I had a major side effect and lost my balance/co-ordination (when I walk my bad leg shoots out in front of me)
About 2 months later, my PM doctor prescribed me "Amitriptyline" to try and help me sleep, but unfortunatley I suffered from another side effect of blurred vision and knocked my right arm getting out of the bath tub. Immediatley my arm began to swell and I had the same type of pain that I have in my leg. My mum took me straight to the hospital again and I was diagnosed with CRPS yet again - I felt like my life had just ended!!
Thankfully the CRPS/RSD in my arm has been into remission and I now only have little pain in it
I have just recently come out of hospital from having an ingrown toenail removed on my bad foot, and the operation caused some more muscle spasms - the whole of my leg shakes now not just my foot!! My PM doctor did say that the op would probably make things worse but I needed the ingrown toenail removed as it was infected.
On Tuesday the 8th April 2008, my PM doctor took me into hospital to try a new muscle relaxant on me, in hope that it would work but unfortunatly it didn't. My PM doctor is now trying to find some other medications/therapies that might help me - I am really grateful for everything that he has done for me.
I will keep you all updated
Love
Alison
18 months ago I was a very happy child, I had just moved to a new school and had made some awsome friends, but then on the 20th March 2007, my life changed drasticly.
I sprained my ankle falling down some steps at my mums work, my ankle was painful and swollen but I just thought it was a normal ankle sprain, but after 5 days of complete rest the pain and swelling got worse. My mum took me to the hospital where they x-rayed my ankle and told me that it was just a normal ankle sprain and that I had to rest it for 2 days and do gentle excersises. I did what I was told to do for 5 days but the pain still continued to get worse, so my mum took me back to the hospital where I was reffered to a Physical therapist thinking that I just needed some physiotherapy and that I would be running around again.
I had Phsyiotherapy for 3 and a half months and I made little progress, in fact I was getting worse, I now had colour changes and muscle spasms in my toes.
My mum knew that something wasn't right so she took me to another hospital, where the doctors were really nice and understanding. They admitted me into hospital and told me and my mum that they thought I had CRPS (Complex Regional Pain Syndrome) but to go a diagnosis I had to go to another hospital that deals with CRPS/RSD.
The next day I was transferred to another hospital where I was diagnosed with CRPS type 1. My Pain Management Doctor did a nerve block the next day but unfortunatley I had a major side effect and lost my balance/co-ordination (when I walk my bad leg shoots out in front of me)
About 2 months later, my PM doctor prescribed me "Amitriptyline" to try and help me sleep, but unfortunatley I suffered from another side effect of blurred vision and knocked my right arm getting out of the bath tub. Immediatley my arm began to swell and I had the same type of pain that I have in my leg. My mum took me straight to the hospital again and I was diagnosed with CRPS yet again - I felt like my life had just ended!!
Thankfully the CRPS/RSD in my arm has been into remission and I now only have little pain in it
I have just recently come out of hospital from having an ingrown toenail removed on my bad foot, and the operation caused some more muscle spasms - the whole of my leg shakes now not just my foot!! My PM doctor did say that the op would probably make things worse but I needed the ingrown toenail removed as it was infected.
On Tuesday the 8th April 2008, my PM doctor took me into hospital to try a new muscle relaxant on me, in hope that it would work but unfortunatly it didn't. My PM doctor is now trying to find some other medications/therapies that might help me - I am really grateful for everything that he has done for me.
I will keep you all updated
Love
Alison
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