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Pain sufferers seek less government in care

Pain sufferers seek less government in care

April 8th, 2018 by Bob Watson in Local News

Lacy Fowler, right, a chronic pain sufferer, is joined by her mother, Marsha Hutchison, for the Don't Punish Pain rally Saturday at the Capitol.

Photo by Mark Wilson /News Tribune.

Imagine a toothache so strong you can't concentrate on anything — you just want it to stop.

For chronic pain sufferers, a toothache may be a very mild thing.

"I would take a toothache any day," Deborah Touches Hawks, who lives in east-central Missouri, said Saturday in Jefferson City. "Because you can get your tooth pulled and it will go away."

Lacy Fowler, of Ava, said the comparison may help some understand what chronic pain sufferers experience even though the comparison isn't perfect.

"Imagine lighting your tooth on fire after you've got that ache," she explained, "and putting it in your whole body, or even half of your body "

Fowler and Touches Hawks were two of nearly a dozen people who gathered Saturday morning at the Missouri Capitol for a "Don't Punish Pain" rally — one of 49 across the country.

The Pain News Network said in its online advance story: "The primary goal of the rallies is to get the Centers for Disease Control and Prevention to change its (2016) opioid prescribing guidelines, which have caused many doctors to stop treating patients with opioid medication or to drastically lower their doses."

Michelle Thomas, of Marshfield, said: "Dependency (on prescriptions) is not equal to addiction. "Many people are dependent for a quality of life, but that does not make us addicts."

Fowler and Touches Hawks said part of the problem is bureaucrats have lumped people who suffer from chronic pain together with those who are addicted to pain medications and opioids because of the highs they can get.

"It's time to unshuffle or re-shuffle the cards," Fowler said.

Now 35, she was seriously injured in 1999, when her car was T-boned on the driver's side — the kind of accident many either don't survive or suffer disabling physical injuries like paralysis or amputations.

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"I had two fractured ribs (and) multiple fractures in my pelvis area," she explained. "I had opaque and gravel and glass structures in my skull."

She's been in almost constant pain since that wreck when she was a teenager.

And that was made worse in 2011, when she fell off a horse "and suffered a cerebral spinal fluid leak for a year onto the damaged area," she said. "And then I had two major spinal surgeries and two (other) major procedures — one every three months — and I haven't been right since."

Today, Fowler looks fine, physically.

"I live with an invisible illness," she said, "(including) a spinal cord injury that affects the central nervous system and attacks the whole body — so my body thinks it's fighting something that really is not there.

"Some days, I'm perfectly able to get up — which are very few.

"Other days I just make it around my house, and it is everything for me just to make it from my bed to the bathroom."

Touches Hawks and Thomas made similar comments about good days and bad ones.

Fowler is married and the couple has two daughters, 11 and 12.

But, Fowler said, her husband has trouble holding on to a job because when she gets really sick, he stays home to help.

"Most of the time my arm hurts," she said. "And I have a lot of shooting eye pain, burning pain, my feet burn.

"It hurts to stand up. And I have a lot of falling episodes, sometimes."

Fowler doesn't drive. Her mother, Marsha Hutchison — a former Ava resident who now lives in Stillwater, Oklahoma — drove to Missouri on Friday so she could drive Fowler to Saturday's rally.

"A caregiver gets very tired," she said — even when the caregiver understands the pain is a real, medical problem.

Hutchison tries to help her daughter's family financially, while Fowler relies on her husband and her children's school to help.

Hutchison said her granddaughters "have lived with (Fowler's) chronic pain all their lives."

Touches Hawks is a registered nurse who was forced to retire after developing chronic pain — some of it caused after an accident.

"I've been in chronic pain for almost 20 years," she said, noting more than 100 million Americans suffer from some kind of chronic pain.

Using numbers compiled by various groups — like the American Diabetes Association, American Cancer Society and the American Heart Association — Touches Hawks said the number of chronic pain sufferers compares with the 25.8 million with diabetes, 16.3 million with coronary heart disease, 11.9 million with cancer and 7 million who've had strokes.

"So, a lot more people have chronic pain than all of those combined," she said.

Fowler added: "There's 30 million Americans living with rare diseases — and there's 7,000 (different) diseases, and most of those cause the intractable, chronic, debilitating pain."

Touches Hawks said last month's state crackdown on Medicaid providers thought to be overprescribing opioids hasn't helped those suffering from chronic pain.

On March 5, Gov. Eric Greitens said: "Too often, Missourians seeking real help are getting hooked on dangerous drugs that threaten their lives.

"We trust doctors to give us sound advice, and most of them do. Family doctors in communities across the state take good care of people and save lives.

"Still, in every system there are bad actors who put greed, ease or profit ahead of their mission to help people."

The governor's news release said Medicaid providers who refuse to comply with the federal Centers for Disease Control and Prevention's guidelines will be held accountable.

"There are prescribers manipulating the system and creating or feeding dangerous habits," Greitens said. "Last year, there were more than 1.2 million opioid prescriptions in our Medicaid system alone — sometimes destroying the lives and families of our neighbors."

But, Thomas said many of those hospitalized or who die from opioid overdoses "do not have prescriptions to begin with" — and it's not fair to regulate prescriptions for those who need them.

"I have a physician who went to school," she argued. "I trust my doctor.

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"It's not in the hands of the government to do my doctor's job."

But she doesn't have a problem with monitoring doctors' prescriptions.

"I think that a responsible doctor is going to do the right thing and prescribe the right medications for the right individual," Thomas said. "Where I have a problem is when the government comes in and tells the doctor that they cannot prescribe what the doctor feels is the best medication."

Thomas came to Jefferson City with the help of a nurse, who's assistance she called "crucial."

"I would love to be able to stand at the sink for a half-hour and get all my dishes done by myself," she said. "But it is not a choice."