Chronic Pain Rights & Responsibilities

Laughing, Loving, and Living With Chronic Pain and Illness

Archive for the tag “Disease”

Update: Changes In The Works

To everyone who follows me and everyone who has stopped in and read a piece or two, thank you for your interest. I will continue to post here on occasion, but as I do not get as much exposure here as I do on other sites, you will likely see pieces I’ve written for painnewsnetwork.org, The Mighty, International Pain Foundation (where I am a Delegate, now), and other pain and health sites. I also need to inform you that this is no longer a Fibromyalgia blog only. At the time I began this blog, I had been diagnosed with Endometriosis, Fibromyalgia, Interstitial Cystitis, chronic Migraines, and Uterine Fibroids.

Since then, I have spent a total of about three months (broken up into a week or two at a time) and have acquired a long list of new diagnoses. This list includes Complex Regional Pain Syndrome (CRPS), also known as RSD (Reflex Sympathetic Dystrophy), This neuro-autoimmune disease is one which effects one’s entire Central and Autonomic nervous systems, as well as many other bodily systems. It is not at all well known or well understood by doctors, and it is extremely difficult to convince doctors to educate themselves, or allow the patient to educate them.

Also, after a year of acute attacks of pain, post gallbladder removal surgery, I was convinced (by the location and specifics of my pain and symptoms) that I had Chronic Pancreatitis. However, after too many ER visits to count, where I was of course called a drug-seeker, and released, I finally developed a measurable symptom…the doctors didn’t tell me that, though. They simply said they wanted to keep me in the hospital for further observation and pain control. Just as one of the hospitalists was entering my room to tell me I would be discharged on the third day, I overheard the nurse saying that my liver enzymes where over 3000. I stopped the doctor mid “Goodbye speech,” and told him I was concerned about my elevated liver enzymes. He angrily asked me how I knew about that! Long-story short, I was kept for another week, ultimately receiving an ERCP with sphincterotomy. I was then diagnosed with Sphincter of Oddi Dysfunction.

I suffered another year, in and out of the ER and hospital, being dismissed as someone with “Chronic Abdominal Pain.” Until finally I went to a biliary specialist, who did another ERCP and placed stents in my liver and pancreas. I remained hospitalized for a week, finally getting the confirmation that I do in fact suffer from Chronic Pancreatitis. Consequently, I was hospitalized again, because the stent in my pancreas was causing a major attack (none of this EVER showed up on blood tests or imaging, by the way. So, if you think you might be suffering from any of thee conditions, PUSH until you get a diagnosis! But, be prepared to be accused of drug seeking and mental conditions, because doctors no longer use symptoms as a means if diagnosis. If it doesn’t show on a test, you don’t have it. Period. But, if you keep pushing, you’ll finally get the test that shows something. For me it was the ERCP. I’ve als developed Carpal Tunnel Syndrome and/or peripheral neuropathy–the diagnosis is still out on that one, too. I have become quite outspoken in the advocacy world, as a Delegate for the International Pain Foundation (formerly Power of Pain), as well as the Kentucky Pain Care Action Network, and as a regular columnist for painnewsnetwork.org.

Dear America, Here’s What You Missed in CNN’s Town Hall

Dear Anderson Cooper & CNN Your “Prescription Addiction” Town Hall was so disappointedly one-sided.

Dear CNN and Anderson Cooper,

I am contacting you because as a former professor of Communication Arts, Writer and Filmmaker, I rely on CNN to be the network where “…the reporters, producers, editors and writers at CNN aim for comprehensive journalism. In their news coverage, they strive to present the whole story, fairly and completely, so that readers and viewers may come to their own conclusions. And in their presentation of opinion and analysis, they strive to represent a range of viewpoints…

Comprehensive journalism also means that we do not let our financial interests determine the topics we cover. Our reporters, producers, writers and editors cover issues that are newsworthy and of interest to our readers and viewers, not because an issue may be of interest to advertisers,” as Time Warner’s Statement of Journalistic Integrity claims that CNN does. As a long time chronic pain patient, patient advocate, pain writer/researcher, regular Columnist at painnewsnetowork.org, and Delegate to International Pain Foundation, I am one of ONE HUNDRED MILLION pain patients whose voices are being completely left out of this narrative. Out of these 100 million, many of us need access to opioid pain medications in order to function on a daily basis. Not because we’re addicted, but because we have legitimate, ’round-the-clock treatment needs, for our moderate to severe pain.

I am contacted daily by patients who are absolutely desperate because they cannot obtain proper pain treatment, or because their meds have been so severely cut or completely withdrawn, because their doctors (even pain doctors) “Are afraid they’ll lose their licenses,” and they can no longer function. I am one of the many who need a level of morphine equivalent, which is much higher than the CDC’s “Recommended Daily Morphine Equivalent Dosage.” I and many of these patients (NOT addicts) see two options if we cannot get the necessary medications—seek relief in the form of street drugs, or commit suicide. It is that simple.

It is abundantly clear that the opioid witch-hunt is quickly snowballing into the new American genocide for those of us who rely on opioid pain medication to have any quality of life, whatsoever. I am not ignoring the problem this country has with addiction, but pain and addiction are two separate issues, and must be treated with two very separate approaches. I am not pushing opioids, just a patient’s right to utilize them to their fullest extent of effectiveness, and I’m an advocate of the doctor/patient decision-making process, over the governmental, media, and special anti-opioid interest groups deciding what patients’ treatment should or should not be.

As for the “recommended therapies,” exercise, Cognitive Behavioral Therapy, etc., and the “Preferred treatments,” NSAIDs, Tylenol, Neurontin, etc. These are all things every one of us has tried, and wouldn’t need opioids if they worked as singular treatment. Most of us still use some of them…in conjunction with opioids. Because as almost any doctor will tell you, chronic pain is complicated, and best treated with a multimodal approach. Without the opioids, we cannot get out of bed to do or take the adjunct therapies. There is some uncertainty as to the efficacy of opioids for long-term chronic non-cancer pain. However, there is absolutely no proof that they are ineffective, and if you ask any one of us who has been on them for a long time, and still take them, it’s because we NEED them, and they work for us. They make our lives a bearable place. Believe me when I say, NO ONE would go through the stigma, shame, and discrimination that we do if they didn’t have to.

Additionally, there IS plenty of research that shows many of these other medications to be far worse in side effects and long-term effects than opioids. Also, there is a distinct difference between addiction and dependence, and the media, government, and medical community has completely overlooked this essential difference in diagnosis. Dependence occurs with many medications which are prescribed prolifically, like SSRI’s, anticonvulsants (like Lyrica and Neurontin), even life-saving medications like insulin cause physical dependence. Chronic pain patients are shown to be highly unlikely to become addicted to opioids, and in fact do not experience the euphoria that addicts crave. They simply experience some degree of relief.

I have spoken out loudly and frequently–in articles I’ve written, comments I’ve made to the CDC, letters to government officials, and so on, only to continue to watch as my pain support system, my doctors, my government, my media all shut me out of my own critical life decisions. It is terrifying how quickly this non-epidemic (compared to other causes of death-Between 1999 and 2014 over 8,000,000 died from the use/abuse of Alcohol & Nicotine.. over 5,000,000 died from medical errors. 700,000 committed suicide…700,000 die from hospital & nursing home acquired MRSA & C-Dif. Almost 194,000 died from prescription drug overdoses) is consuming our culture, filling the minds of the many with the bullied bias against the few, while the pandemic of pain continues to eviscerate American citizens. This is the time for the media, especially CNN and Anderson Cooper to step in and be the voice for those who cannot compete with the multi-million dollar anti-opioid campaign that is taking away Americans’ basic human rights to “Life, liberty, and the pursuit of happiness.”

We have all read and heard statistic that “Over 16,000 people dying every year from opioid overdose.” This number has been hammered into our heads as the opioid “epidemic,” I read it quoted in a New York Times article just last week. Two things are ironically and consistently left out–This statistic is from 2011 (since then, the number has gone down significantly) and, the CDC ADMITTEDLY SKEWED THE NUMBERS!

“The CDC study is based on a review of death certificates and didn’t sort out legitimate opioid prescriptions, illegal use of opioids, suicide, deaths caused by alcohol or other medications, or even if the death was truly from opioids and not from some other disease process. Did the patient die from lung cancer or opioid toxicity? Sometimes the latter is entered as the cause of death when it is not the case.”
A close reading of the CDC study also turns up something else. Other medications, particularly anti-depressants, sedatives, anti-anxiety and other mental health drugs, often were involved in the overdoses — not just opioids. To quote from the study: “Opioids were frequently implicated in overdose deaths involving other pharmaceuticals. They were involved in the majority of deaths involving benzodiazepines (77.2%), anti-epileptic and anti-parkinsonism drugs (65.5%), anti-psychotic and neuroleptic drugs (58%), anti-depressants (57.6%), other analgesics, anti-pyretics, and anti-rheumatics (56.5%), and other psychotropic drugs (54.2%).

Why do we never hear about an “epidemic” of deaths from anti-depressants or sedatives? Because in all of the deaths involving multiple drugs, only opioids are singled out as the cause of death. In a recent survey of pharmacists and drug wholesalers by the General Accounting Office (GAO), over half said DEA enforcement actions had limited their ability to supply drugs to legitimate patients. Many said they were fearful of being fined or having their licenses revoked. You won’t see that story being reported in The New York Times or Los Angeles Times because the CDC and DEA aren’t churning out press releases about it.” (painnewsnetwork.org)

I urge you to read some of the articles that I and others have written on painnewsnetwork.org, which demonstrate true journalism, and provide you with information which could lead to the REAL reasons for this opioid hysteria–if you don’t already know. I encourage you to be the network that tells the WHOLE truth, and shows Americans all sides of this story. It has truly become a Civil Rights Issue, which deserves your attention.

According to the Journal of American Society of Anesthesiology, “the unreasonable failure to treat pain is poor medicine, unethical practice, and is an abrogation of a fundamental human right.” So, please endorse the chronic pain community by loudly and clearly speaking out against the invalidation of people with pain, illness, and disability, and help us stop this genocide against the vulnerable members of our society. I am not asking you to “endorse opioids,” just to tell the story of the millions who suffer already, and are being further stigmatized and marginalized.

Sincerely,

Emily Ullrich
Delegate
International Pain Foundation

Myths, Assumptions, Realities, and Confusion Surrounding Fibro

Let me start with myths and assumptions. People with Fibromyalgia are not lazy. They are not hypochondriacs. They are not crazy (at least not because they are aware of their illness!). Fibromyalgia is not something you can just ignore or “power through,” and it absolutely does not mean you are weak. Trust me, those of us who have it have gone through many days of questioning ourselves about these exact things. It is only when you recognize that NONE of these things are true about you, that you can begin to tackle the disease, and all that comes with it. AND, it is only when you realize that none of these things are realities about someone you know or love who has Fibro, that you can begin to understand them, help them, relate to them, and be informed.

Next, I would like to address the realities of Fibro. It is still very misunderstood, even in the medical community. Because it is a pain-centric illness, it is hard for many people (doctors included) to see as “real”. There are a set of sister illnesses that come with Fibro (and assist in the diagnosis of it) but Fibromyalgia itself cannot be seen, it does not manifest in visually tangible ways. Also, because it is more often a “womens’ illness”, like many other things that affect women in the medical community, it is not taken as seriously.

My own doctor, in fact, does not take Fibromyalgia seriously. He has told me as much. However, I don’t have insurance, he treats me with compassion, and because of the medications I take, changing doctors at this point would be a nightmare. There are so many ailments that accompany Fibro or are (in combanation) seen as signs of the disease, that I cannot name them all. What I will name are the ones that I suffer from. Chronic, unrelenting pelvic pain. Endometriosis (an overgrowth of the uterine lining that can grow anywhere in the body–including the brain, that causes a LOT of pain). Intersticial Cystitis (an inflammation of the bladder and urinary tract which makes you feel like you have a severe bladder infection, but shows no signs). Fibroid tumors in my uterus. Irritable Bowel Syndrome. Depression. And, most recently, chronic and debilitating migraines.

Most doctors, and people who hear these symptoms, see treating the symptoms as a solution. However, the thing about Fibro is that pain and ailments migrate. Once you have “remedied” one problem, another arises. Also, I (and others with the illness) can feel fine one minute, and be beside myself in pain five minutes later. So far, the doctors I’ve seen (and I’ve seen A LOT!) want to do numerous surgeries on me, and/or they treat me like an addict seeking pain medication because they can’t SEE the problem. I am not okay with having surgeries that inject steroids into my spine, removal of my female organs, or going home in pain, and trying to “forget” about it, and NOT OKAY with being treated like a criminal because I admit that I have pain!

I am slowly finding my way through the web of confusion surrounding this illness, and I want to advocate understanding for myself and other sufferers. There is no “cure” for Fibromyalgia, but there is a cure to ignorance and insensitivity:)

I’m “Coming out” of the Fibromyalgia closet

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I am thirty-seven years old, and I am “coming out of the closet” about the fact that I have Fibromyalgia. Over the past five years, it has been becoming more and more of a presence in my life. Up until the past week or so, I literally thought that I could “power through” the debilitating illness, if only I did this or that. Especially since the general attitude of people who do not have this disease is that you just need to, “Get out of the house…Get some exercise, or take a nice hot bath.” After spending the past three weeks with a migraine headache that was so painful, and induced so much nausea that I literally prayed to die at moments, I have finally come to terms with the fact that this is not going away. Not only is it not going away, it is a HUGE part of my life. Hardest for me to admit aloud is the recent sinking in of the reality that I am incapable of holding a regular job. I have always been very career-oriented, and driven toward my creative and philanthropic goals. I have no intention of giving up those goals, but I realize now, that I have to reinvent them. I cannot be held responsible to show up at a 9-5 job, especially one in a third-world country (as was previously my ultimate goal). I have decided to take up blogging (not just about living with Fibro, but also about my travels to Africa, and about sex and sexuality—all things that I have had aspirations to write about for years). Through blogging, I hope to reinvent my goals and participate in the world, again. So, this will begin my tell all about living with Fibromyalgia. The other topics will be on WordPress, too, and I will be starting them soon.

If you know me personally, you will be able to gain insight into the struggle I’ve been dealing with. If you know someone else with Fibro, I hope you will be able to understand, accept, and empathize with them through what you read here. If you suffer from the illness yourself, or suspect that you might, I hope that you will find comfort in reading about the familiar issues. So, this is just an introduction. I am slowly coaxing myself out of the shame closet!

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