Mixed Connective Tissue Disease

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Fighting back against the deeper pain of pain

 Debi Stanley, 39, didn't recognize the person looking back from her mirror three years ago. The face was the same, but the spirit was gone, eaten away by a parasite called chronic pain. The pain in her back and hips had all but wrecked her life.

"This wasn't me," said Stanley, of St. Charles, Mo. "And I had three children who had only seen me living in pain. There were days I couldn't get out of bed," she said. "It tore at my marriage. I'm a stay-at-home mom, and I was relying on my husband to do what I would normally be doing."

With the birth of her twins -- and 17 months later the arrival of another daughter -- Stanley's family life couldn't have been better. She dismissed the pain for months as part of childbirth's aftermath. She promised herself it would go away. Instead, it got worse.

"I couldn't clean. I couldn't stand. I couldn't travel," Stanley said. "I needed help with the kids -- three kids in diapers and highchairs.

"I told myself I was going to get better and that was it.

"When my husband told me I was getting worse, I got really angry at him," she said. "I was in denial; the only thing getting me through each day was hoping it would get better."

She sought help from doctors and got one diagnosis after another. Pills didn't work. She underwent surgery that fixed nothing. Each attempt at treatment left her with the same message: Live with it.

"It was like each doctor only knew about their one little circle of specialty," Stanley said. "No one knew the whole picture."

The stress pushed her to a psychiatrist, who put her on antidepressants.

The worst part, she remembers, was that she saw no end, no relief in the future. So in her mind, she made up an impossible future.

"I just believed one day the pain would go away," she said. "I was in denial."

About two years go, she walked through a Borders bookstore and saw a spiral-bound paperback manual titled "Beyond Chronic Pain," by Rebecca Rengo-Kocher.

Rengo-Kocher, a psychotherapist, overcame her own chronic pain and later became a counselor specializing in helping others with chronic pain.

Stanley contacted Rengo-Kocher, who immediately recognized Stanley's first symptom. Stanley felt isolated, angry and stigmatized, Rengo-Kocher said.

"She needed someone to listen to her, believe her, follow her through the process of controlling her pain instead of letting the pain control her," Rengo-Kocher said.

Stanley's frustration was not unusual, said Penney Cowan, founder and head of the American Chronic Pain Association.

Much of the frustration, Cowan said, stems from the inability of others -- including family, friends and co-workers -- to see the source of the pain.

One day you're nearly fine, and the next day you can't move.

"That sends mixed messages to people when they watch," Cowan said, speaking from her office in Sacramento, Calif. "You could do it today, so why not yesterday?

"It sends a confusing message to the person with the pain, too."

"The key is to manage the pain," Rengo-Kocher said. On a scale of 1 to 10, with 10 being the worst, "you want to get it from 8-9 to 2-3."

On Rengo-Kocher's advice, Stanley visited a specialist in pain management. Rather than deal with a condition that was causing pain, he dealt with the pain as the condition.

The process led to a diagnosis of congenital hip dysplasia and some torn connective tissue in her hips. Some sources of her pain were left undiagnosed, but doctors didn't say she had to live with it.

Medicines were prescribed to reduce the intensity of the pain, and the physical therapist gave her exercises to improve her mobility. The counselor provided suggestions to help Stanley adapt to life with chronic pain. But mostly, the whole committee working on her problems understood.

"My physical therapist told me that the stress of chronic pain can be the same as the stress from having cancer," Stanley said.

Stanley's physician, Dr. Anthony Guarino, head of Washington University's Pain Management Center, said patients such as Stanley often show up frustrated, angry, depressed, burned out -- and still hurting.

"Their pain has disrupted their lives," he said. "Sometimes it's more, sometimes less. It depends on how long you've waited. Sooner is always better than later.

"Depression, anxiety, insomnia and stress magnify pain. Sometimes we can't figure out what's causing the pain. Then we treat the pain as the disease."

Rengo-Kocher gave Stanley tips on how to adapt. For example, a misunderstood symptom of chronic pain is a messy home.

"There's only so much you can do," Rengo-Kocher said. "You set priorities. You do what you can (children, cooking, shopping, people maintenance) then leave the rest until you can get to it. Sometimes that means clutter."

Stanley bought a tool that picks things up without requiring her to bend over. "I call it a grabber," she said with a laugh. She slept better, got better and accepted that she'd never be free of some pain.

"When I went to the pain doctor, I asked, 'Why didn't I do this before?'

"It never occurred to me. I thought (chronic pain) was people with cancer. It's not just back and knees, there are all kinds of people who are in chronic pain; they still need to go to work every day and watch their kids."

The best lesson Stanley learned about her chronic pain was that she had to be her own No. 1 advocate.

Anyone who has chronic pain, she said, needs to take control and know that there is relief. The condition doesn't have to be a disability.

That means:

* You find a physician.

* You evaluate the effectiveness of your treatments and medicines.

* You hire people who can help and fire those who can't.

* You balance the risks with the benefits.

Cowan, of the American Chronic Pain Association, agreed.

"More than any other form of doctor-patient relationship," she said, "chronic pain is a partnership with you in charge."

She found some success with two medications: naproxen sodium and a mild, time-released opioid painkiller. The pain didn't disappear, but she could move again. With that, plus some training from a physical therapist in how to use her lower limbs, she's active again.

"I don't like to take drugs," she said. "I'd rather pray through this. But this wasn't bad, no side effects.

"You have good days and bad days. At my job, I'm up and down a lot. But I'm dancing again. I'm taking dance lessons that sometimes go on for three hours; you can really work up a sweat. But I still come home and put ice on my knee, no heat.

"I never thought of it as chronic pain, but ... this pain was hindering me, making me irritable. But it's good now."

Pain's impact

According to statistics from the 1999 National Pain Survey and the National Pain Foundation:

More than 75 million Americans -- about one in four -- suffer from chronic pain.

Back pain is the leading cause of disability in Americans under 45 years old.

One in three American adults lose more than 20 hours of sleep each month because of pain.

Pain treatment costs an estimated $100 billion a year (in 1999). More recent statistics put the figure at $180 billion.

Lost workdays because of pain add up to more than 50 million a year.

Nearly 4 million Americans -- most of them women -- suffer from fibromyalgia, a complex condition involving widespread pain and other symptoms.

The American Pain Foundation counts 2,500 board-certified pain medicine physicians in the United States. The foundation also notes that there's no requirement for a physician to be certified, so the number of physicians, physician assistants and nurse practitioners who dub themselves pain specialists is nearly impossible to pin down.



Candidate for Colorado House has legal problems

June 6, 2008
Sheila Hicks, who's seeking election to the state House of Representatives, is wanted for not appearing in court, has judgments against her for an eviction and not paying taxes, and was the subject of a restraining order in connection with alleged domestic abuse.

Hicks said her troubles with the law, documented in court records, partly stem from her disability. She said she has mixed-connective tissue disease, a rare autoimmune disorder.

"When a person is disabled and living on a fixed income, these kinds of situations are not uncommon," she said.

Hicks said voters have an interest in knowing about her background, but she declined to offer an explanation about the court records to people whose support she's seeking.

"I would think I'm better off not saying anything because it's going to sound like excuses," she said.

Hicks is seeking the Republican nomination in the Aug. 12 primary election to represent House District 17, which covers Fort Carson and part of southeast Colorado Springs. None of Hicks' legal problems constitutes a crime nor makes her ineligible to hold the office. The seat is now held by Stella Garza-Hicks, who's not seeking re-election.

Her opponent for the nomination, Republican Catherine "Kit" Roupe, said the information is valuable for voters.

"I hope, when they consider who they're voting for, that they take these things into consideration," Roupe said.

Among the cases identified in a search of 4th Judicial District court records:

Donna Austin, who Hicks said is her sister, requested a temporary restraining order against Hicks citing "domestic abuse." The order was in place from June 21 to Aug. 14, 2002. Hicks said the order was part of a feud between her and her sister. She said her sister requested the order as retaliation for other legal action Hicks had filed against her. She said she was physically incapable of abusing her sister at the time. "This is while I was completely incapacitated and couldn't even stand up without a wheelchair," she said.

Hicks didn't show for a hearing on citations police issued to her in connection with a traffic wreck Sept. 27, 2002. The judge issued a warrant for her arrest on Dec. 9, 2004, which court records indicate remains active. She had pleaded not guilty to charges including failure to carry insurance and failure to yield the right of way.

Hicks said she thought the case had been resolved and didn't know about the warrant until The Gazette alerted her. She said she was driving her daughter's car when another driver hit her, and she didn't know her daughter's insurance had lapsed.
Payne Chapel AME Church Housing Corp. took Hicks to court in 2005 to pursue an eviction from one of its properties. The judge ruled against Hicks. She said she wasn't living in the apartment at the time."My son was on the lease. He was 18 years of age. I had moved out and had not been living there for over a year when my son was evicted. My fault was I failed to take my name off the lease," she said.
 The Colorado Department of Revenue, the state agency that collects taxes, filed a civil action against Hicks in March 2004 saying she owed $579.55. Court records list the status of the case as "unsatisfied," but Hicks said she never owed any money and had cleared up the problem with the state agency. Hicks said an agency "reported erroneously my disability payments as income."
Court records also show Roupe's had some financial troubles. MBNA America Bank filed a civil case against her and her ex-husband in 2004 citing a debt of $7,458.89. The case status is listed as "full satisfaction."

"It was part of the divorce settlement and so I paid it. I have all the documentation saying I'm free and clear," Roupe said.

A search of court records turned up no documents on the Democratic Party candidate for House District 17, Dennis Apaun.


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