Oakdale woman won't let pain rule her life
Posted on Mon, Nov. 20, 2006
BY RHODA FUKUSHIMA
In June 2005, Kristi Caldwell of Oakdale was vacationing with her daughters and friends at Marine on St. Croix. A part-time personal trainer, Caldwell was in good shape. But while waterskiing, she fell, blacked out and, unbeknownst to her, tore her right hamstring off the bone and severed her sciatic nerve. An X-ray didn't reveal the problem, and a doctor told her it would heal on its own. But Caldwell didn't improve, and she was in horrific pain. She got an MRI, consulted an orthopedic surgeon and had surgery immediately.
"When I woke up, I was crying like a baby. I was in severe pain. It wasn't from the hamstring. It was because the sheet was touching my leg. It was a totally new kind of pain. It's like a thousand bee stings under your skin.
"The next day, they (the physical therapists) tried to teach me how to walk on a crutch. I was still having horrible pain on the inside of my thigh. My leg started turning purple and was freezing cold. My foot was like an ice cube.
"My husband was in Iraq at the time. I was living with my sister-in-law. She was taking care of me.
"I went back to the orthopedic surgeon. He barely touched the back of my leg and I just started bawling. He suspected something else was wrong. He told me I had to get into a pain clinic immediately.
"The day I was scheduled to go to the pain center was the day my husband was scheduled to come home. When I met my husband, I was in a wheelchair. It wasn't the homecoming I had planned, but he was just so happy to be home.
"I was diagnosed with reflex sympathetic dystrophy syndrome/chronic regional pain syndrome. More than likely, the trauma of the accident caused me to develop this condition.
"The sympathetic part of the nervous system controls the fight-or-flight response. My nervous system is in that heightened mode. The injured body part becomes extremely sensitive.
"I had been a very devoted gym-goer. With my husband in Iraq, working out got me through the days. I was at the gym at 5:45 a.m. five days a week. To abruptly stop was extremely difficult.
"I was doing sit-ups in bed — a week after surgery. My sister-in-law wanted to kill me. I started doing weights. With the brace, it was really difficult to walk. But I still kept that six-pack, let me tell you.
"For six to 10 weeks after surgery, physical therapists came to my house. You're really not supposed to exercise when you have RSD. They had no idea I had RSD. I was doing things that were good for the hamstring but bad for the RSD.
"RSD will never go away, but I had a 90 percent chance of going into remission when I got in to see the doctor. They gave me three spinal injections to calm down the nervous system, but they didn't work.
"The pain gets so severe you want to cut off the body part. I have to be very careful around knives, heat and cold weather. If I cut my finger, the RSD spreads because of the trauma.
"I take 17 pills in the morning and 13 at night. I also have fibromyalgia, which was under control until the RSD.
"I started going to the YMCA in Woodbury. My physical therapist applies Japanese kinesio tape for the pain. I do healing touch. I get on the Migun thermal massage bed.
"I had a cleaning business, which I had to close down. I go to the Courage Center for job retraining. I started a branch of an RSD support group.
"I just try not to focus on it. I try to stay busy. I'm very involved with my church.
"I have accepted that I am changed. I have bad days where I can't get out of bed or feed myself. But then I just think, 'I'm going to get through this, God.' It might be a couple of days, sometimes a week.
"I'm not going to let it take over my life."
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Monday, November 27, 2006
Oakdale woman won't let pain rule her life
Thursday, November 23, 2006
Local collector of the unusual
Tom Hefner collects sports memorabilia items.
But it's not nearly that plain and simple.
The 39-year-old Douglass (Montg.) Township resident prides himself on remembering "Philadelphia's forgotten teams ... those that started and eventually failed." But Hefner does not limit his searches to local "minor-league" squads.
His favorite memorabilia targets, so to speak, are teams that were affiliated with the defunct USFL of the 1980s.
He's the owner of a seven-foot Reggie White poster, when White played for the Memphis Showboats. And he has a 1986 USFL football autographed by Jim Kelly. (Please take note that the USFL did not even have an '86 season.)
A former auto painter, Hefner has been disabled since 1988, Reflex Sympathetic Dystrophy (RSD) taking a major toll over the years.
"While Muscular Dystrophy affects the muscles, RSD deals with the nerves in the body. The receptors that signal pain are turned on constantly ...so my left side always hurts.
"I don't have full use of my left side, and my driving is limited. I used to go out for physical therapy, but now I do the therapy at home. Some pain medications help."
Those are the bare-bones details of Hefner's disability, in his own words. But he doesn't dwell on it; rather, he exudes passion and excitement as he describes his nearly-fanatical avocation, this hobby of collecting sports-related mementos.
His litany of minor league knowledge is extensive and impressive. Hefner loves to talk about the USFL, including the Philadelphia Stars, who actually garnered a league title in 1983-84. (The USFL suspended all play in August, 1986.)
And that's just the start.
"The Philadelphia Blazers played in the World Hockey Association ... Bernie Parent played for them in '72 and '73. And the Philadelphia Bell was part of the World Football League in '74 and half of '75.
"And there was indoor soccer ... the Philadelphia Fever team folded in 1982 ... the entire Major Indoor Soccer League shut down in '92 ... I have almost all of the Fever programs, but tickets are harder to find."
Hefner resides with his mother, Tama Hefner. His mom plays a part in all of this, as well. It's not unusual for her to sew and repair old sports jerseys that her son adds to his vast collection.
His father, Raymond Hefner, died in 1994 from emphysema-related factors. "It was a slow and painful death ... I hate to see kids smoking these days ...they don't realize that smoking really takes a toll on their bodies."
Tom Hefner actually started collecting baseball cards when he was five years old. "And in the 1980s, I wrote to the USFL and started collecting those (minor league) items."
"Sometimes I find things online ... I've made a lot of good friends who know I collect ... and once in awhile I go to sports collectibles shows."
Why his extreme interest in the so-called "forgotten" teams?
"For some reason, I used to watch the Philadelphia Bell games with my dad. That got me interested in the 'other' teams.
"But I'm still an avid Flyers fan ... hockey is my favorite sport. And I like the NFL, but not as much as the USFL."
Hefner was featured recently in "Tuff Stuff," a magazine which concentrates on sports memorabilia and card-collecting. Writer Kevin Glew did a story on team photos, and Hefner and his colleagues were spotlighted in that piece.
The local collecting-aficionado mentions one of his best friends, Rick Smith, who is also a USFL fan. "Rick actually has a bigger collection than I do ... people refer to him as 'Mr. USFL,' and they call me the 'USFL kid.'"
Hefner's USFL assortment includes stadium banners, a league banner, uniforms, programs, collectible mugs, programs and tickets. "I even have the stadium banner of the New Jersey Generals, a team owned by Donald Trump. And prior to computers, weekly informational sheets were sent out to all the media outlets. I have about 700 of those media sheets."
"Fortunately, this hobby helps to take my mind off of my disability. People know I have a real interest in this ... and that keeps me going. Different league people from the USFL have been good enough to send me information ... I have the 'USFL library' at my house."
On his stubborn disability: "It's been about 20 years ... and it's not getting better, but also not getting worse ... it has only affected my left side ...some people have it all over their bodies ... my physical therapy at home is important."
His disability aside, and his sports memorabilia concentration taking center-stage, he's now focused on developing a "strictly USFL" website. "It's not always easy, but I'm learning the computer functions and slowly developing the website. I've received so many requests from people about this (an extensive website)."
Tom Hefner continues to take his fascinating sports hobby to new heights.
©Berks-Mont Newspapers 2006
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Compiled by Editor at 11/23/2006 07:39:00 AM
Wednesday, November 22, 2006
B.C. woman’s recipe wins contest
Linda Jo Scott
For the Enquirer
Clydella “Penny” Freeman never won a contest in her life.
That is, until now.
As the grand prize winner in a Whirlpool “Glory Spirit of Cooking” contest, Penny will receive all new Whirlpool appliances for her own kitchen and a year’s supply of Glory Southern food products.
In addition, her church, Community Baptist Church, will be presented with a free CeCe Winans gospel concert Saturday and receive $5,000 for its building fund.
“On the day I learned that I had won, I was really feeling down,” Penny said. “I’m in a lot of pain all of the time because of reflex sympathetic dystrophy, and I was asking, ‘Why me? I’m not a bad person. Why me?’”
RSD is a chronic neurological syndrome that causes burning pain, swelling and sweating.
Then the call came that Penny, 53, had won the grand prize for an old family recipe for sweet potato pound cake.
“The recipe came from a family reunion cookbook,” she said. “When they called I felt a whole lot better, all of a sudden. But my main reaction was simply, look what God can do.”
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Compiled by Editor at 11/22/2006 07:01:00 AM
Friday, November 17, 2006
CHRONIC PAIN PATIENT REACHES OUT TO OTHERS
Paul Livingstone, Portland Press Herald
If Keith Orsini had started his Organization, American RSDHope, just for others, he would have to count himself pretty successful. Since 1995, the support organization for people who suffer from Reflex Sympathetic Dystrophy Syndrome now is the focus of a popular website based in Harrison, Maine, a successful yearly national conference and, starting early next month (November 2006), (will be filmed by) documentary by filmmaker Barry Adler (of Impactmedia, see link below for additional articles).
According to Orsini, he is just one of eight percent of people with RSD throughout his whole body. Most sufferers have localized pain, typically in the limbs. Orsini said he experiences from head to toe what is commonly described by sufferers as an intense burning sensation.
His symptoms began in 1974 at age 14, and he was told the pain would eventually go away. When he broke his back in a car accident in 1985, the pain spread. Not until 1993 was he diagnosed with RSD, and he later learned it affects as many as 20,000 people in Maine. This abnormal nervous system response can start with a simple injury.
"With RSD there is no way to make you feel better. No one is in a position to help you, it robs you of sleep , short-term memory, concentration, and all of the things that make you a whole person, " said Orsini. Over time, he lost the ability to walk, and had trouble convincing doctors he wasn't "faking" his condition. Shortly after moving to Maine, he found an RSD sufferer who gave him two bags full of RSD literature about the disorder. Until then, he and his parents had very little knowledge about the problem.
With the help of his parents, Lynne and Bob of Harrison - known on the internet as Mom and Dad O - the 46 year old was able to launch a website devoted to support for people with RSD. American RSDHope has a staffed phone number, sends mailings, and holds conferences.
"It was originally intended just to help people in Maine, it has just kind of mushroomed," said Orsini. The website now gets about 25,000 hits a week . "It's really about awareness. There are barely any treatments for this disease," he said.
In 2004, Orsini was just the sixth person given a newlydeveloped treatment using ketamine. When used in low doses, he said, the drug, a powerful tranquilizer often used for horse (and in the emergency room), helps the body re-set the pain cycle to zero. His pain levels immediately dropped to just 15% of what they had been (for the RSD prtion of his pain). His pain has redeveloped over time, but he is scheduled for another treatment this fall.
"Even if it only helps half the patients, in one year we'll have advanced more than in the last 100. It's an exciting time," said Orsini.
For more information about Reflex Sympathetic Dystrophy Syndrome, or CRPS, or American RSDHope Organization, you can visit their website, www.RSDHope.org
KEITH ORSINI - PART TWO
I just wanted to add some things to the previous article that was written about me last month.
As is the case in many interviews and articles, as many of you out there can attest to, they are not always able to get the entire story and there are always one or two things that are a little off. The paper only allows so many words of course. Paul, the author of the previous article, wanted to do a longer story but I guess that is the mark of a good journalist right?
As is the case with many journalists, I think he was a little overwhelmed by the whole thing once he learned more about the disease and the extreme impact it can have on people's lives.
I have had the pleasure of talking with many wonderful reporters, newspaper and television, who are surprised by this disease. They are surprised at first because they have never heard of it, shocked when they learn of the devastating pain that is involved, and then excited when they see the potential for a great story. We all have great stories don't we?
It is amazing how this disease can take a fairly normal life and turn it inside out. I always say it is like a bomb is dropped into a family. it affects every aspect of family life not just the patients own body. It destroys finances through the loss of employment as most patients are unable to work; savings dry up as the medical bills pile up.
Many marriages fail as the stress rises. It takes a very special spouse to stick with and by an RSD patient as the Doctors tell one or both the pain is imagined, or that the pain will never go away, or that the patient is a drug-seeker or Doctor-shopper, or maybe it is just the daily battles with symptoms like short-term memory loss, concentration, irritability, insomnia, exhaustion, and the side effects from the medications.
These are some of the many things that are difficult to get across in a typical five or ten paragraph newspaper article or 2 or 3 minute television interview. Another problem I have run into lately, where I am currently doing much better than I have in the past, is that I don't look like I am in pain to the average person. To another chronic pain patient, who knows what to look for, the signs are easy to spot; bags under the eyes, slight hesitation getting into or out of vehicles or chairs, the need to lie down for a few hours every afternoon, etc. Some things that are seen some that are not. But I no longer have the wheelchair I had only a few years ago. I no longer use the cane I did only a year+ ago, so to the average person I look normal . I get those strange stares if I have a bad day and need to use the handicap sticker in my car or on my license plate.
What they don't realize and what is truly impossible to get across to a someone not in the RSD community, be they patient or loved one, is that everything could change in an instant. A little over a year ago I tripped over my cat in the kitchen. In trying not to squish her on the way down, and also not to land on my head, I ended up twisting my back and landing hard on my side. it aggravated my RSD and my lower back problem. I was in physical therapy three times a week for four months. I was having to use my cane and my pain during those six months was very high.
I feel very blessed to be doing so well right now. Those of you who saw me at the conference on November 3rd and 4th, 2006 probably noticed I had lost some weight and my pain level was down from the last conference and definately down from the pictures that are on the website in the RSD Awareness items section. It was due to a combination of factors; walking every day I could in the last year, using the local Bally's Gym (mainly treadmill/Bike), the residual effects of the ketamine infusion, a good course of treatment from a great RSD Doctor (Doctor Paul Muscat of Portland, ME), and I have been following the principles of ACT or Acceptance and Committment Therapy.
Anyway, I got off-topic. Back to the article.
In the article it mentioned that Barry Adler of Impactmedia was filming his documentary. I just wanted to make sure it was clear that American RSDHope is not the focus of the documentary. What is the focus is RSD or CRPS and its impact on the patients and their loved ones as seen through the eyes of BArry Adler, the filmaker. It is his families journey through this process. He will be including many interviews with patients, loved ones, as well as medical professionals.
Now, he came to the conference and filmed the conference for us. He also did quite a lot of interviews, separately, for the documentary. He interviewed many patients and their loved ones abouth their experiences with RSD, including myself and my better half, Petra; she runs, along with Tom Ruggles, our Loved Ones workshops at our conferences.
I wish in the article he was able to better convey the pain I described to him that we endure. I always use the same two analogies; fire ants and limb-on-fire. For those familiar with fire ants, they are typically in the warmer parts of the United States, they are nasty little ants that have a venom they inject when they bite. It burns with a very high intensity. They are usually found in the ground and will swarm when attacked. If you step on a fire ant mound your foot is instantly engulfed in a sock of flaming red ants and it is a pain exactly like RSD.
In the Limb-on-fire analogy I liken RSD to replacing all of the blood in your veins in your limb with lighter fluid and then lighting it on fire. then having it stay that way 24 hours a day, 7 days a week. that is the nearest approximation I can give to a non-RSD person of what it is like. Then they visibly flinch when you tell them you have full-body or systemic RSD and feel that throughout your body. But again, I understand that there is only so much room in a newspaper.
At the beginning of the article he mentions that my pain began at age 14. That is true. I had developed an eye disease called Uveitis. Its chief symptoms were intense burning pain and decreased vision, mainly left eye but affected both. They couldn't find a reason for this though no matter how many tests they ran or specialists they sent me to. The Doctors were quick to point out however that even though they didn't know exactly what it was, they did know that there was no reason for the intense burning pain I was describing.
But they didn't diagnose me with RSD. That would take another nineteen years and an automobile accident. Actually it was a truck accident. I spent the intervening years, 1974 to 1993, going to many Doctors, specialists, etc. (like so many of you) in different clinics in different states. All specialists in their fields in all different fields. All said pretty much the same type of things to my parents and myself;
1) It is all in my head
2) I am making it up to gain attention, especially since there were five kids in our family they were sure this was the case.
3) There was absolutely no medical reason behnd my complaints of burning pain, sleeplessness, sensitivity to light/sounds/vibration, etc.
4) I was Doctor shopping until I found one who would agree I was "sick"
5) I was just looking for medication.
Compiled by Editor at 11/17/2006 04:15:00 PM
Tuesday, November 14, 2006
Little known about RSD
Syndrome needs research, advocate says
Issue date: 11/8/06 Section: Features
For many readers, Jamie Young's story of living with Reflex Sympathetic Dystrophy may mark the first time they have heard of the syndrome.
For those who suffer from RSD, however, the chronic pain that accompanies it is a constant reminder.
"A lot of times people are isolated, and they have difficulty because no one really can understand it," said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, a nonprofit organization dedicated to raising awareness and funds for RSD research. "More and more people are telling their stories - that's increasing the publicity."
RSD, which is also known as Complex Regional Pain Syndrome, occurs when part of the nervous system malfunctions, sending constant pain signals to the brain. RSD can be triggered by a wide variety of events, some of which seem relatively harmless.
"RSD usually occurs after some sort of physical trauma," Broatch said. "It could be after an accident, after surgery, or it could be as simple as spraining ankle or giving blood. Somehow it sets off a chain reaction in the nervous system, and it must be hit quickly or it will spread."
CRPS/RSD is characterized by continuing pain in the affected region, changes in skin blood flow and evidence of edema. Although it remains virtually unknown, the syndrome has a fairly lengthy history in the United States.
"The first time it became prominent was when Union soldiers came back from the Civil War," Broatch said. "Their wounds had healed but they still complained of searing, terrible pain. They even got to the point that they put their limbs in buckets of ice."
Because of its relative obscurity both in the medical world and in the public eye, however, the syndrome is often misdiagnosed and misunderstood. Sufferers often have to see multiple physicians before being accurately diagnosed with CRPS/RSD, and many can have prolonged battles over compensation if they can no longer work due to the pain.
"Once you're labeled with something, then the company has to put up reserves," Broatch said. "This can be a very expensive diagnosis, because once adults are diagnosed with it, many cannot go back to work ever."
One of the most frustrating aspects of CRPS/RSD, Broatch said, is the simple lack of research on the syndrome.
"We really don't know why both of us can sprain our ankle, but one of us can get RSD and another won't," he said. The syndrome is two to three times more frequent in females than males, however, and diagnosis often occurs in patients in their early 40s.
There is no cure for CRPS/RSD, Broatch said, and there is no specific treatment to partially relieve its symptoms, although some effective methods include medication, physical therapy and sympathetic nerve blocks.
Those interested in learning more about CRPS/RSD can call the RSDSA at 1-877-662-7737 or visit http://www.rsds.org.
RSD At A Glance
Although the disease is often
misdiagnosed, Reflex Dystrophy Syndrome (RSD) is characterized by several symptoms, including:
• Severe burning pain
• Pathological changes in bone
• Excessive sweating
• Tissue swelling
• Extreme sensitivity to touch
• Changes in skin temperature
• Evidence of edema
• Decreased range of motion
• Motor dysfunction
• Immobilization due to pain
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Compiled by Editor at 11/14/2006 04:50:00 PM
Monday, November 13, 2006
Lucky's hosts Lawlerpalooza 2006 Saturday
Saturday, members of the local music scene will band together for Lawlerpalooza 2006, a benefit concert for Jimmy Lawler. In 1998, Lawler was diagnosed with Reflex Sympathetic Dystrophy, which gave him severe pain and led to depression. In 2001 some of Jimmy's friends in the Long Island musical community got together to help him meet the burden of the horrors of RSD. Using Jimmy's last name and a reference to a popular major music festival, Lawlerpalooza was born.
The insidiousness of RSD (also known as Complex Regional Pain Syndrome) continued to beat Jimmy down physically, emotionally, legally and financially. After he had relocated to Cortland, his new friends in the Central New York music community hastily organized Lawlerpalooza 2004 to help him keep some of his medical coverage when it was taken away by his former employer.
The event kicks off at 4 pm. and runs until close. Tickets are $7, though donations of any size are encouraged. There will be raffles for cash and prizes, food donated by local businesses, and a whole lot of fun for a good cause for a nice guy.
Here's the schedule:
5 p.m. - Mark Francis
5:40 p.m. - Karina Murphy
6:20 p.m. - Travis Bailey
7 p.m. - Heather Jones
7:40 p.m. - Sandra Lauren
8:20 p.m. - Eric Lichter
9 p.m. - Linda Stout
9:40 p.m. - Chris Merkley
10:20 p.m. -Jimmy Lawler & Guests
11:15 p.m. - “Tom Fury”
12:15 am- Allstar Jam
“I can't thank everybody enough for participating this year,” says Lawler. “I don't expect to see too many of my out of town friends, but I hope you'll raise a glass somewhere that day and party with us. My friends Katie Sheridan, Nicole Dintino, Bob Catalano, Kelly Phillips, and Lisa Crane were particularly instrumental in organizing this year's event. If my doctors ever cure me... or at least reduce the pain enough so that I'm able to work, I won't have to rely nearly as much on my friends. Thank you!”
To learn more, visit www.myspace.com/lawlerpalooza2006.
Advance tickets can be purchased ($7) at Lucky's, The Blue Frog Coffee House, and Ultimate Music. Or you can send all donations to:
PO BOX 365
CORTLAND, NY 13045
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Compiled by Editor at 11/13/2006 03:45:00 PM
Thursday, November 02, 2006
Conference is latest step for campaigner
27 October 2006
WEB EDITORIAL - email@example.com
THE first UK conference on Complex Regional Pain Syndrome, organised by a brave Whittlesey woman who has the condition, will take place in December.
Trudy Lapinskis, of Stonald Avenue, is behind the conference, to be chaired by North-East Cambridgeshire MP Malcolm Moss, at the Central Methodist Hall, Westminster, on December 5.
Miss Lapinskis has attracted prominent speakers from all round the world, who will outline movement disorders, how to manage CRPS and early diagnosis of the extremely rare condition.
She was diagnosed with CRPS in 1994, after knocking her back on the corner of a table, and is believed to be one of the worst cases in the country. Complications meant she had her foot amputated.
She has been campaigning to raise awareness among healthcare professionals and handed a petition to 10 Downing Street last July.
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Compiled by Editor at 11/02/2006 08:23:00 AM