Johnna Stahl’s Blog Memorial

Rest In Peace my friend you will never be forgotten.

Life of an El Paso Woman

Hi everyone. Today we celebrate our fellow blogger and friend Johnna Stahl’s life. Johnna’s loved ones held a memorial for her Friday in Houston. Johnna’s sister, Mary shared this beautiful video of Johnna’s photography and memorial with me. She asked me to share it with the blogging community. Please feel free to share any memories you have of Johnna aka painkills2 from the All Things Chronic blog in the comments. Feel free to also share poems, quotes, music and/or general comments. Johnna will be missed by many.

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I’m so glad I had the pleasure of meeting her last July in Albuquerque. She was very nice and fun to talk to in person and via e-mail. Johnna was a huge supporter of my blog and writing career. She encouraged me to start writing my book and continue freelance writing after a five-year break. Although I haven’t finished the book yet, I intend to finish it later this year or in early…

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More Than 80 Percent of Patient Groups Accept Drug Industry Funds, Study Shows by KATIE THOMAS

This says to follow the money!!!!!!!

Jeffrey Browen, Optometrist


By KATIE THOMAS

About 80 percent of the top advocacy organizations received funds from industry sources, and sometimes failed to disclose their ties publicly.

Published: February 28, 2017 at 07:00PM

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FDA calls for science-based, comprehensive strategies for opioid abuse

Making it harder for an addict to abuse our medication doesn’t stop them. It only causes us with chronic illnesses and chronic pain to pay higher cost for medications that don’t work. I know this all to well when I was switched to one and it didn’t absorb correctly as noted in this great article.

EDS and Chronic Pain News & Info

The way forward on opioid abuse: A call to action for science-based, comprehensive strategies | FDA Voice

From the director of the FDA, Margaret A. Hamburg, M.D., comes a refreshingly rational and measured approach to opioid abuse and addiction.  She repeatedly stresses that legitimate patients should have access to opiods and admits that the current state-led efforts to restrict particular medications (like Zohydro) have left some pain patients stranded without medication.

The recent attention paid by state policy makers around the serious public health problem of misuse, abuse, addiction, and overdose of prescription opioid painkillers is commendable.

However, it is important that such efforts comprehensively address the real root causes of the problem, are grounded in science, and will make a real and lasting difference.

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Heroin use at 20-year high in U.S.

Here we have the truth as we knew it to be so. The End

EDS and Chronic Pain News & Info

Heroin use at 20-year high in U.S. drug ‘epidemic’, U.N. says | Reuters

A heroin “epidemic” is gripping the United States, where cheap supply has helped push the number of users to a 20-year high, increasing drug-related deaths, the United Nations said on Thursday.

Notice that this is NOT an epidemic of “prescription opioids”.  It seems very wrong to conflate the number of heroin users and overdoses with prescription drug users.

As was obvious to pain patients who wouldn’t even know where to find heroin, prescriptions drug abusers find heroin just as attractive.

The media combines illegal heroin with legal prescriptions to create astonishing numbers due to “opioids” because they are in the same drug class, but the uses of these two substances are completely different.  

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Profitable but unproven opioid solution

EDS and Chronic Pain News & Info

Drug makers push a profitable but unproven opioid solution – StatNews – Dec 2016

Drug makers are aggressively pushing their remedy to the problem [opioid overdoses]:

a new generation of harder-to-manipulate opioids that have racked up billions in sales, even though there’s little proof they reduce rates of overdoses or deaths.

The latest drugs — known as abuse-deterrent formulations, or ADFs — are generally harder to crush or dissolve, which the drug makers tout as making them difficult to snort or inject.  

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Opioids Most Effective Pain Control for EDS

Exactly right as EDS is very hard to find and treat. Opioids work best for everyone with chronic illnesses and chronic pain. It took 9 years for me to be diagnosed with MS, then DDD in my entire spine, OA, Osteoporosis, Fibromyalgia, IC and Migraines. I’ve had 3 spinal surgeries and another major one is scheduled. When will our government realize that there are many diseases without a cure for whic opioids are our only option. Please send them my way so they can study my chronic illnesses and chronic pain?

EDS and Chronic Pain News & Info

Pain control methods in use and perceived effectiveness by patients with Ehlers-Danlos syndrome: a descriptive study. – PubMed – NCBI – Disabil Rehabil. 2016

The purpose of this study was to assess the pain control methods in use by patients who have Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders, and their perceived effectiveness.

METHOD: This descriptive study involved 1179 adults diagnosed with EDS who completed an anonymous on-line survey.

The survey consisted of demographics information, the Patient Reported Outcomes Measurement Information System (PROMIS) Pain-Behavior, PROMIS Pain-Interference, and Neuro QOL Satisfaction with Social Roles and Activities scales, as well as a modified version of the Pain Management Strategies Survey.  

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Even Guideline Writers Express Concern over its Use

Right on the money as I have a letter written to President Obama from one expert witness where he felt bad for not speaking up.

EDS and Chronic Pain News & Info

What’s in that Opioid Plan from CMS? by @StefanKertesz 2/28/17

Several physicians have asked me to justify concerns regarding a plan announced by the Centers for Medicare and Medicaid Services (CMS), a plan that Dr. Adam Gordon and I have described as enforcing opioid prescribing recommendations laid out by the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain in a non-patient-centered way.

“When four CDC Guideline experts express a degree of concern at what CMS proposes to do, it suggests that CMS is not adhering to the intent of the CDC Guideline, but violating it.”

They don’t doubt our clinical concern. However, they want details on why we think the CMS Plan will have the impact that we project it will have, given what’s in it.  

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