Cedar Rapids Iowa Activists To Host “Don’t Punish Pain Rally” Representing Ehlers-Danlos Syndrome, Lupus, Other Emotionally Empowering Chronic Pain Syndromes

There is a DON’T PUNISH PAIN RALLY in Green Square Park in Cedar Rapids, Iowa on September 18 from 12:00 until 2:00 PM.

*PLEASE REPRESENT OUR PAIN COMMUNITY IN IOWA BY FOLLOWING THESE SIMPLE RULES-
😍 NO Smoking 🚭 in Green Square Park
😍 NO stakes or sticks in posters or signs per Parks & Rec Safety Conditions
😍 Please use appropriate language 🤬
😍😍 REMEMBER – we will be drawing the attention of many 👀 eyes, as well as multiple 📹 media coverage. They will be watching us for reinforcement of the stereotypes. Let’s NOT give them ANY ammunition.
🙏🏼 Please dress appropriately. Use your best judgement when talking to press. No offensive language on signs, clothes, or in conversation.

We want a respectful, positive, organized rally.So many have suffered through pain management clinics, specialists, and doctors who have later been forced to take away all of our pain management plans. Most after working incredibly hard, and often traveling quite far, to finally find a doctor, a specialist, a pain management clinic that has even HEARD of our diseases, diagnosis, disorders. Many who, after finally FINDING actual medical care with experience in the area that they need, and working diligently and over a great deal of time with their team to get on the proper dosage of pain medication that was right for THEM, to sign contracts with pharmacies, with their medical team, to agree and comply with any and all testing required by their state, their doctor, their facility. Happily, because after getting any form of relief when one had been living in a prolonged state of chronic pain, one will gladly agree to go to great lengths to ensure that they are able to continue to receive pain control, no matter how degrading or demoralizing the cost.

We simply want to function at a semi-normal level. To take part in our own lives. Whether that be being able to go to the grocery store, to a Walmart, Target, or Mall, to a kids sporting event or activities at school, to visit with family, to attend religious events, or to be involved with community activities. To actually try to live some kind of existence out of bed and off the couch.

The number of chronic pain patients who have chosen suicide has skyrocketed since 2016. Most of those were people similar to Jennifer Adams, a Sheriffs Deputy in Helena, Montana, who had CRPS. Like those I have mentioned, Jennifer had been responsibly, continuously, and predictably taking her pain medication for several years, as prescribed and monitored by her doctors. When her doctors were methodically, one by one, put out of business, like so many doctors are for prescribing pain medication, she no longer had access to any pain control. Jennifer Adams chose to end her life rather than continue to suffer unbearable unending intractable pain.

We are trying to reach out to each of you who suffer from intractable chronic pain! From rare diseases like CRPS/RSD, Lupus, Neuropathy, Ehlers-Danlos Syndrome, frequent surgeries, procedures, or complications from unusual circumstances following an injury, illness, or trauma. Or those who are caretakers of children or loved ones who have rare diseases and suffer from pain, as well as those who represent the many who we have already lost here in Iowa.

Please consider joining us at Green Square Park on September 18th. Help us spread the message that the people living with chronic pain should not be punished. Those living with rare diseases that cause intractable pain should be given the same care, and the same medical treatment as one living with diabetes. What is next, taking away one’s insulin? Giving up working towards a cure for cancer? It is scary to see so many people suffer so needlessly.
And for whose agenda?

We would love to see you there!

Media coverage tells more. From https://www.news-leader.com/story/news/local/ozarks/2018/09/13/chronic-pain-patients-rally-springfield-hospital-drugs/1285090002/:

There will be similar rallies in all 50 states, Jackson said. Folks will rally at the Springfield hospital from noon to 2 p.m.

The rallies are intended to highlight chronic pain patients who say they are having trouble finding physicians who will prescribe opioids or pharmacists who will fill their legal prescriptions, Jackson said.

“People are having problems when they go to the ER with acute pain,” Jackson said. “Doctors are saying they can’t write any pain medication or giving them (only) three to seven days of medicine after having a major surgery like a knee replaced or hip replaced.”

MORE: Missouri opioid deaths rise, but slowly. Is prescription-tracking working?

Jackson said she’s been dependent on her medicines for many years and can not function without them.

In recent years, her doctor was shut down six times by the medical board, leaving her to be shut off of her prescriptions with no tapering several times.

“Just complete shut down. It’s nerve-racking on your body,” she said. “Your body can’t keep going up and down, up and down. The medicine specifically says, ‘Don’t stop abruptly.’”

MORE: Local professionals react to new CDC guidelines on pain drugs

Jackson said she thinks the government needs to stay out of the physician’s office.

“That’s kind of like a lawyer and his client,” she said. “That’s a bond you don’t break.”

In 2016, the Centers for Disease Control and Prevention urged physicians to avoid prescribing opiates to patients with chronic pain, saying the risks of overdose and addiction far outweigh the benefits for most people.

The CDC issued guidelines for primary care providers regarding prescriptions of opioids, like OxyCotin, Hydrocodone and Vicodin. Doctors are not legally required to follow the guidelines, but the directives have had an influence.

Among the CDC’s recommendations, there are three principles:

• Non-opioid therapy is preferred for chronic pain outside of active cancer, palliative and end-of-life care. These therapies include non-opioid medications, behavioral therapy, physical treatments like exercise therapy and weight loss and steroids.

• When opioids are used, the lowest possible effective dosage should be prescribed to reduce risks of opioid use disorder and overdose.

• Physicians should exercise caution when prescribing opioids and monitor all patients closely. This includes checking the prescription drug monitoring program before starting and periodically during the continuation of opioid therapy, using urine drug testing to identify other prescriptions and illicit drugs, and arranging treatment for opioid use disorder.

Jackson said she hopes the CDC will revisit its recommendations and include chronic pain patients, along with cancer, palliative and end-of-life care patients.

READ FULL ARTICLE: https://www.news-leader.com/story/news/local/ozarks/2018/09/13/chronic-pain-patients-rally-springfield-hospital-drugs/1285090002/