Migraine and Me: If you could see me now #MHAM2018 challenge

Migraine is the 3rd most prevalent

and 7th most disabling disease in the world.

(MigraineDisease.com)

As I reported in my blog 12 Months and 14 Fibro Musings from The Pained Ink Slayer, the spring and fall seasons are two difficult times of the year for me. I live with chronic migraine all year long, but barometric pressure changes and tree and grass allergens can lead to a status migrainus attack, a migraine lasting for more than 72 hours straight. In May, a very busy month for fibromyalgia advocates, I experienced an episode lasting 14 days that required a steroid blast to stop it. And, I can't remember doing a fibromyalgia awareness interview without a migraine.

THE SHADOW OF MIGRAINE

”Hiding my migraines on the set may have been my toughest challenge as an actor. There were times when the pain from migraine headaches was so severe that I literally had to crawl across my dressing room floor. But I couldn't let anyone know. If they thought I might slow production, I figured that would end my career.”
~Morgan Fairchild

If you live with migraine, you know exactly what this is like. As a high school student, I spend many a day lying on a cot in the nursing office. As a young adult, I remember retreating to the bathroom to vomit and escape the overhead lights of the office where I was a switchboard operator, fearing every second that I would lose my job over something I could not control. I remember the look my mother's face when she came to pick me up to take me to the emergency room, where my condition called for stat IV's and lab work to check my clotting factors. Unbeknownst to me all the tiny blood vessels in my face had ruptured (my head had been over the toilet for the better part of a day). I barely had a blood pressure.  

Unless you have migraine disease, you simply cannot understand what that means. It is so much more than a bad headache. It will cause sane people to do crazy things. I can tear sheets with my teeth, rock back and forth on my hands and knees, and cry out in pain with the guttural sounds of an injured animal, sounds that even I do not recognize. I have pressed so hard on my eye sockets that it leaves bruises. I slur works like a drunk, speak in sentences that make no sense, and experience complete personality breakdown.

THE STIGMA

Despite all the evidence that migraine is real, and that it is a neurobiological disease of the brain, we still feel the stigma of migraine. I wish I could say we didn’t need migraine awareness campaigns, but we do. Few understand what we have learned in the last ten years and we need to change that.

Read more about the research and the common denominators of those of us who live with both migraine and fibromyalgia in an article I wrote for ProHealth, Fibro Playmate of the Month–The Migraine Connection.  

Life isn’t easy living with migraine, but when I share my story, I am able to emerge from the shadow of migraine. I hope you will too. #MHAM2018

Find out how YOU can get involved. JOIN THECHALLENGE at MigraineDisease.com where you will find all you need to raise awareness and stop the stigma of migraine.

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Chronic Pain Disease and the Opioid Crisis: Myra Christopher Changing the Narrative

If you are like me, you are upset by the reporting of the opioid crisis by mainstream media. I have found myself screaming at the television because of the skewed reporting. Make no mistake, there is an opioid crisis and it breaks my heart, but how in the world will we ever get those addicted the right treatment if we don’t look at the problem with eyes wide open? How can we blame and abandon people living with incurable diseases that keep the body at constant war with homeostasis because of the disease process that potentiates the disease of chronic pain?

“We must have balanced policy—policy that addresses two public health issues—untreated and inappropriately treated chronic pain and the opioid crisis—without unintentionally harming one patient population or the other. To get there, we MUST also have balanced media coverage.”

~Myra Christopher, Director of the Pain Action Alliance to Implement a National Strategy (PAINS, an initiative of the Center of Practical Bioethics)

Maybe you have read some of my blogs or visited my website where I share information on my personal opportunities as participant in PAINS and PAINS-KC. One of the pleasures of my own advocacy is getting to know and meet with Myra Christopher and the many other advocates and chronic pain citizens who share my journey. Following is Myra’s voice published in the PAINS Member Update, October 17, 2017.

Changing the public narrative about chronic pain as a disease

By Myra Christopher

Sunday night, I watched 60 Minutes on CBS as they interviewed Joe Rannazzisi, former Deputy Director over Diversion at the Drug Enforcement Administration (DEA). Rannazzisi was portrayed as a “whistleblower,” and he blamed drug distributers, unscrupulous physicians, and members of Congress for fueling the opioid crisis. The week before, NBC did a week-long series on the opioid crisis, and the week before PBS did one also.  I could go on—week by week by week—there is not a major news outlet (print, blog, television, radio, or web) that I could not list as well.

Before proceeding, I need to make two disclosures:

·        I have met and worked with Joe Rannazzisi.

·        We have worked with the DEA closely in the past—with Rannazzisi’s predecessor and colleagues at the DEA for whom I have great respect.

In 2008, we worked with the DEA, the National Association of Attorneys General, and the Federation of State Medical Boards to measure the impact of physicians diverting prescription pain medication. That study was published in the journal Pain Medicine (Vol. 9, No.6). I tell readers this to assure you that PAINS is very concerned about the opioid crisis and respects the role of law enforcement in protecting the US population from illicit drugs AND assuring that an adequate supply of medications is available to maintain the health and well-being of all Americans. My concern is about the irrefutable lack of media coverage of a related but separate public health issue, i.e., inappropriate and untreated chronic pain management.

On Friday, October 13, PAINS hosted a roundtable in Washington, DC, that included top officials in the federal government, leading pain care providers, people living with chronic pain and their advocates, academics and a handful of media representatives to discuss the need for more and better reporting on the “chronic pain epidemic” and the unintended consequences that pain sufferers are experiencing related to federal policy attempting to contain the opioid epidemic and the media frenzy around it. This is critically important because it is our view that media shape public perception and public perception leads to votes, which leads to public health policy – interestingly the foundation of the argument made by Joe Rannazzisi in his 60 Minutes interview.

·        For years, PAINS and others advocating for better chronic pain care have called for “balanced policy.” More than a year ago, PAINS decided to move upstream with our No Longer Silent initiative that led to last week’s meeting in DC. We must have balanced policy—policy that addresses two public health issues—untreated and inappropriately treated chronic pain and the opioid crisis—without unintentionally harming one patient population or the other. To get there, we MUST also have balanced media coverage.

“If it bleeds, it leads!” is an adage often repeated about media coverage. Granted, the chronic pain crisis is not as “sexy” as the opioid epidemic. However, both of these issues are critically important to our society’s health and well-being.

I will be honest that there are many days I feel pretty discouraged about ever accomplishing our goals, then I see a report like this one that appeared on the front page of the Worcester, Massachusetts paper which highlights the plight of Lauren Deluca and quotes PAINS Advisory Committee Member, Cindy Steinberg, who also lives with chronic pain. I encourage you to read this article and ask you to share it with your friends and colleagues via social media, email, carrier pigeon!

[Insert from Telegram.com, Worchester, Massacusetts]

“Ms. Steinberg noted that legitimately prescribed painkillers weren’t the main source of the opioid crisis. The majority of fatal overdoses were associated with illegally obtained substances.”

SHARE

Many with chronic illness denied prescriptions in fight against opioids 

by Susan Spencer 

http://www.telegram.com/news/20170923/many-with-chronic-illness-denied-prescriptions-in-fight-against-opioids

We will ask you to do the same with the report from last week’s No Longer Silent meeting when it is published in mid to late November. Until then, let me share just a few “take-aways” from that meeting:

Improving chronic pain care in America will require culture change. More specifically:

·        Changing the public narrative about chronic pain as a disease

·        Removing the stigmatization of those who live with chronic pain and those who care for them

·        Better education of physicians, nurses AND patients

·        Reimbursement models that support comprehensive chronic pain care, not just prescription opioids, interventional procedures and surgeries

·        Better data and more research

It’s a tall order but what one of my colleagues calls “worthy work.”

Comprehensive chronic pain care will improve the lives of millions of Americans, save billions of dollars and reduce opioid prescribing.

My conclusion

Will people be left to chew off their limbs like wild animals to escape pain? Will we continue to read about suicides because of untreated or undertreated pain? Will the public continue to blindly trust those in authority who have a political agenda? Can we make informed decisions based on unfair, unbalanced reporting? Are we ready for the consequences of staying silent? Your voice is only a click away.  Please join the PAINS Project initiative...

No Longer Silent!

Additional Reading:

About Myra Christopher

Patient Powered Research Network Pain Action Alliance to Implement a National Strategy in Kansas City (PAINS-KC)

The Symposium "Patients as Teachers," "Clinicians as Learners," a Synopsis

In healing,,Celeste 

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

The Painful Truth Documentary Is Here!

As stated in my blog in September of 2015 The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD, Dr. Webster’s message is irresistible. His dedication to writing the book and producing this documentary (with Craig Worth) is a testament to the spirit and determination he has for people living with pain. He advocates for awareness of the seriousness of untreated or undertreated pain, suicide and addiction. (You can view more information at The Painful Truth Documentary  website.)

Over the weekend, I got an email from Dr. Webster and I am so excited to share it with you.

Dear friends,

I'd like to share some exciting news: "The Painful Truth," the documentary I co-produced with Craig Wirth, was distributed by NETA on March 1 [2017] to all public television stations in the United States. On March 3, it aired on KENW (Portales, NM) and on WXXI (Rochester, NY), and later this month it will air in several other states including Georgia and Montana. I am hopeful that the documentary will air in as most major cities, though this is a decision that is at the discretion of each local station. 

When documentaries like this air on public television, it is common for the host stations to include a discussion with relevant community members. If your local public station decides to air this documentary and you would be willing to make yourself available for a panel discussion, I would encourage you to reach out to your station to offer your participation. It could be a great opportunity to discuss how important it is to Transform the Way Pain is Perceived, Judged and Treated as described in the 2011 IOM report Reliving Pain in America.

Dr. Webster is building a list of the stations and air dates/times for the documentary, which will soon be on the documentary's website, 

www.ThePainfulTruthDocumentary.com 

Please visit the website periodically to check availability in your area and/or contact your local PBS station. 

The release of this film is timely, and it offers the opportunity to have an open dialogue with our healthcare providers and our communities.

In healing,,Celeste

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Hiding in the Shadow of Migraine

"Hiding my migraines on the set may have been my toughest challenge as an actor. There were times when the pain from migraine headaches was so severe that I literally had to crawl across my dressing room floor. But I couldn't let anyone know. If they thought I might slow production, I figured that would end my career."

~Morgan Fairchild

"I can't tell you how many shows I've done with full-blown migraine headaches."

~Jonathan Taylor Thomas

"This is a soul under perpetual migraine attack."

~Richard Schickel

Despite all the evidence that migraine is a neurobiological disease, we still feel the stigma of migraine.

Having lived with migraine for 50 years, I have seen advances. Gone are the days of seeking emergency care to get a shot of a narcotic, so I could hopefully ride out the attack, but even that resulted in a miserable narcotic hangover headache. It's a sad commentary, when misery is the better scenario. Unless you have migraine disease, you simply cannot understand what that means. It is so much more than a bad headache. It will cause sane people to do crazy things.

"I didn't feel physically sick. But mentally. My mind was twisting in so many ways. (...) We once saw a documentary on migraines. One of the men interviewed used to fall on his knees and bang his head against the floor, over and over during attacks. This diverted the pain from deep inside his brain, where he couldn't reach it, to a pain outside that he had control over." 

― Jay Asher

A few years ago, while on respite in the Rockies, I suffered a horrible attack. I awoke at 4 a.m. (What I have come to term migraine reveille). Nothing helped and I spent that night in unbelievable pain, vomiting and having diarrhea. None of the tools in my kit worked. It was refractory.

As with nearly all my migraines, my right eyelid was drooping, and my right eye was crossed. My entire scalp was numb and tender, so I couldn’t hold my hair to keep it out of the way. On the second morning, I knew I needed help. So my husband contacted the ranger and we made our way to urgent care in a nearby town. It was a pain filled and anxious journey, because I had to leave the security of my commode.

On arrival, despite looking ragged, rugged, and severely ill and having symptoms that could suggest I was having a stroke—I heard the comments. “This one SAYS she has a migraine”. It wasn’t until after I told them I needed an Imitrex injection and supportive care that they established eye contact. That’s when I was wheeled to a gurney. My blood pressure was through the roof despite severe dehydration (and a lifetime of combating low blood pressure). I was decompensating, my body’s fight or flight response was in full gear, I knew it, and they knew it. Now they were yelling for the doctor as they put me on a cardiac monitor. Urgent care began; IVs with electrolytes were started; I got my Imitrex(R) injection and something IV for vomiting. I also got a muscle relaxant, because cervical neck disease, myofascial painsyndrome, and occipital neuralgia are among some of my triggers. All effects of a refractory migraine need to be considered to break the cycle. When my symptoms improved, and my vital signs stabilized, I had something to say.

Having been a board certified emergency RN; I knew their judgmental attitude was inappropriate, and as a past legal nurse consultant, I can say, their behavior was neglectful. I said some of the following at the time, some I included in my letter to the administrator, but I think you will get the gist. I told them:

·        It’s important to understand migraine.

·        Establish eye contact with your patient.

·        Take a good history and do a physical exam, including neuro checks.

·        Sick people seek drugs too, and you should be compassionate when you hear the word migraine, not make judgmental statements.

·        I am acutely aware that addicts say they have migraine to get narcotics.

·        Not all migraineurs respond to abortive medications and patients look to you for treatment.

·        As urgent/emergent care providers, you should know what is in your arsenal to help the migraineur.

·        Because a migraineur asks for a narcotic, it does not mean they are an addict. It could mean a narcotic is the only thing they have been offered in the past, there could be a variety of other reasons, but you won’t know without that history.  

·        How you respond could mean the difference between helping and contributing to stress, including suicide. It has happened.

·        Even though I will not start the HIPPA complaint process, you violated my rights to privacy by discussing my case where others could hear.

In a teachable moment, I emerged from the shadows of migraine.

Many migraineurs live in the shadow of their disease, do you?

Learn how to get started, here. (Updated June 2018)

(Signature line appended June 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.