Don’t Punish Pain Rally to be held Thursday
Those suffering from chronic pain, or their loved ones, are asked to join this year’s Don’t Punish Pain Rally in Downtown Fort Myers to get their voices be heard about the difference between legally prescribed opioid medications and illegal street drugs.
Punta Gorda residents Kathy White and her sister Debra Aellig, who suffers from chronic pain, are organizing a Don’t Punish Pain Rally at Centennial Park, 2000 W. First St., in Fort Myers, from 9 a.m. to 2 p.m., Thursday, Oct. 17. The rally is being held in conjunction with dozens of others across the nation, White explained, to protest the continued discrimination and abuse of patients with chronic pain caused by the federal and state governments denying them access to adequate medication.
She said their mission is to energize the diverse community of people affected by pain by providing a rally, so their voices are heard. They also want to help the public understand the difference between legally prescribed opioid medications and illegal illicit street drugs.
“The rally last year was O.K. It is very hard to get any kind of big turnout for this particular type of thing,” White said. “Most of the people involved in it are in too much pain to go to the rally and sit for a few hours and communicate with people. We are not as visible as a group as others are. We are not trying to raise money, we are trying to raise awareness.”
White encourages elected officials to join the rally because they need to stand up for the millions of Americans living with chronic illness.
“We can’t do the marches in Washington because it is too difficult for people to get there,” she said. “It is a challenge to get to Fort Myers. We live in Punta Gorda. Once a month I have to drive my sister’s to their pain medication doctor. One prescription for one month at a time. That’s why we need more people to come out, friends and family and pain patients that can manage to get out.”
White said for those who cannot get to the rally, join them on Facebook at DontPunishPainRally.
Aellig, who is a registered nurse, had to stop working due to the amount of pain she endures every day. As a child she had scoliosis and in 2002 she started experiencing a great deal of pain, which gradually became worse over time.
“I’m 59. It started at 42” years old, Aellig said.
The doctor visits began, as well as infusions and medication to help with her back problems.
“I used to be very active. I was a water skier, racketball player. In 1982 when I graduated from nursing school (I never would have thought) we would be facing the pain situation that we are today. I would have laughed in your face,” she said.
When Aellig moved to Florida four years ago, she was on a certain amount of medication and was able to function. She said she was able to help her sister pack and physically drive from Wisconsin to Florida.
“I was an active person. I was able to be active. I didn’t act impaired in any way,” Aellig explained.
In 2016, White said the problem chronic patients began experiencing started when the Center for Disease Control and Prevention started issuing guidelines to prescribing opioids.
“People in pain are not getting enough medication. There is no way to get extra medication. The DEA continues to insist that the doctors are causing the problem. The problem being dying from overdosage,” she said.
The problem with that, White said, is that everything is being grouped into the same category, when there are prescribed opioids, and illegal fentanyl coming from China.
“If they separate those two, there would be immediate clarity. The majority of the deaths are that of illegal drugs,’ she said. “The doctors and patients continue to be persecuted for using perfectly legal medication. We have empathy for people who have an addiction and then resort to street drugs and dies. That is a separate problem.”
Aellig said last June her pain doctor was evaluated by the DEA. The DEA, she said, shared that people should not be on high dosage of opioids, which caused her doctor to go along with what they were saying, causing her dosage to be lowered.
“That was the snowball that started to roll. Now there is an avalanche and we are being buried” Aellig said. “There are very few people that take prescription opioids who abuse the medication. Not to say it never happens, but very few and far in-between. I do believe that our government overreached, the intention was good, but now the DEA is completely out of control.”
She went into withdrawal because she had a lot of pain and was on a limited amount of medication. Now her life has become limited because of the amount of pain she experiences.
The life she leads is now in snippets, a short swim in the pool to help alleviate the pain, or a short 30 minutes or so at the computer, before she is laying down in bed or on the couch because the pain becomes too much.
“I try and try with physical therapy. I tried swimming. I go to the pain doctor. I’ve been injected so many times you have no idea,” Aellig said.
She said if she went back on her regular dosage, she could do more.
“We would like to visit with our family and visit for more than a half hour. We wouldn’t be bed-bound,” Aellig said, adding that she would like to be properly treated as her doctor sees fit. “The doctor/patient relationship has been sacrificed because of the DEA. The government shouldn’t be removing part of the ability to have a better way of life, it’s just wrong.”