Who Can Afford the Cost of Living with Chronic Pain?

www.nationalpainreport.com/who-can-afford-the-cost-of-living-with-chronic-pain-8840082.html

Most chronic pain patients do not expect their lives to be a picnic. Chronic pain inflicts psychological and physical damage that can drain the resources of the strongest and most resilient among us. What most of chronic pain patients don’t always anticipate is the additional personal pressure created by the combination of the almost inevitable loss of income and the added expenses not covered by insurance or our savings. It is difficult enough to have been living a normal life to suddenly be inflicted with chronic pain, perhaps for the rest of your life. But to add more insult to injury, the concerns as to where we are to find the financial resources needed to obtain the correct equipment, treatments, transportation, medication, etc. adds unneeded stress to a difficult life to learn to accept.

It seems particularly unfair when one is unable to have the coverage for treatments proven effective for a particular condition. This adds stress which then negatively impacts a patient’s health. Here are some examples I have to face and I am sure many of you will be able to post other circumstances you have had to face:

• I have to have most of my medications compounded to remove the ingredients of fillers that my body can’t metabolize – but due to being compounded, insurance offers no coverage. Although I could buy that drug with the regular fillers included with coverage, yet I totally have to pay out of pocket for my medication.
• I need to travel many times to get to the knowledgeable doctors for my condition, EDS and there is no reimbursement for travel, lodging, food, etc.
• And heaven help us trying to turn to safe alternatives in attempts to prevent surgery. We are traveling soon to Ohio to see a jaw specialist to see if I can avoid surgery by instead using a mouth guard to keep the jaw from subluxing/dislocating. Again, there is no coverage since it doesn’t match their insurance codes for the mouth guard, but yet surgery on the jaw would be covered.
• Co-pays sure to add up, too. Living with my medical condition, Ehlers-Danlos, manual PT is a lifeline and a way to reposition the constantly subluxing bones. But for many of us, we have a limit of money for the year for coverage so we either suffer or have to pay out of pocket to address our issues.
• Insurance does help with some of the equipment needed, for instance, a power chair. However, co-pays can get really exorbitant. For some, it becomes too much to take on so the person suffers without the needed assistance.
• I happen to only be able to metabolize a few medications and for pain, all I can turn to is ketamine or cannabis. I am lucky to live in the state of Rhode Island that has allowed the medical program into our state since 2006. However, as you all know, we don’t get reimbursement to buy the product or grow it. Others get to go to a pharmacy and fill their script, while we have to grow, fight mites, mold, the waiting process of growing to get our help along with no help financially.
• Our life and house have been dedicated to trying to keep me alive. The money spent to travel to twenty-four surgeries, equipment like the hospital bed, power chair, manual chair, oxygen converter, bi-pap machine, etc. gets overwhelming and makes me feel guilty to have been the reason our retirement money is being frittered away. The dreams of traveling are pretty much shot, vacations are rare to none and we have learned to make trips to doctors and try to make them like mini vacations, but this attitude doesn’t always work!
• Even food costs me extra. I am so restricted with food sensitivities, that I have to buy good, unprocessed, pesticide-free healthy food and that cost adds up.

I am shocked at how expensive it is to be handicapped and living with pain. I try so hard not to dwell on it, but there are times it feels overwhelming, along with unfair. I didn’t ask to have my conditions, didn’t do anything wrong to be born with them, and have had to pay the financial price. And I am a lucky one for there are times we have been able to swing the cost of things I need. But having recently downsized and still awaiting the money from selling our farm, I have had to again make those hard decisions and weigh out what can wait and what has to be down now. It is not fun to know there are things out there to help but one can’t afford to turn to them. I hope that someday the medical system will function as it should. The healthy majority should accept the responsibility for ensuring that the best care is available to all as I am sure that the vast majority of individuals and families will at some point in their lives, need costly care. Treating the chronically ill with the best comprehensive medical care may in fact save money by. For example, minimizing the anxiety from conditions such as depression and ulcers helps to provide the chance to live the best one can with what they have been inflicted with.

How Can Others Help?

• Consider donating, when you are able, to go-fund me pages of those trying to cope with medical expenses. It is amazing how small amounts do add up and help others.
• Consider donating to someone trying to cover the cost of a service dog. Many reached out and helped me that I didn’t even know.
• Consider paying it forward with information of resources that one might qualify for but are not be aware of.
• Consider donating used equipment to a program that refurbishes them or give directly to one in need. A simple post on Craig’s list can be effective. Many of us are experiencing the loss of family and friends who have had medical issues and have equipment that others could make use of.
• Consider seeing if you can donate flying mileage points to one that needs to travel for medical needs.

May life be kind to you,

Ellen Lenox Smith

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I Am: An Un-apologetic Opioid Patient

www.nationalpainreport.com/i-am-an-un-apologetic-opioid-patient-8840127.html

I take opioids. I have been taking them now for almost 4yrs. Opioids don’t eliminate my pain completely, and there are some days that I still can’t function, but they have allowed me some semblance of a life. I can not emphasize semblance, strongly enough. My world absolutely changed when I began experiencing pain and the symptoms of my chronic illness, that I did not know at the time. I pushed myself through it brutally, until I couldn’t do that anymore either.

Before I became sick and plagued by pain, I was an active mother and student, trying to finish my degree at the University of Houston. I loved yoga and while I still practice, it is very cautiously and with different expectations than what I do now. My dream was to continue school and either get a Master’s or a certification that would allow me to work in public health. I love contagious disease. That sounds grim, I know, but it was a passion of mine to be able to protect people from unseen killers, of endemic diseases. I wanted to protect my community. I never got to finish school, one class shy of a degree, because my health hasn’t been very cooperative and my pain makes it difficult to focus.

Liza Zoellick

I take opioids regularly throughout the day in order to blog and participate in my family without the pain preventing me from enjoying life. I still need help with every aspect of my life, and without my children and husband there to assist, I am not certain what kind of life I might be living. It’s easier asking my children for help now, but when they were younger, I often didn’t and pushed through the pain which would leave me useless for days. How do you ask children who are in trying to juggle a full-time job and college courses, or high school classes which include dual-credit, to take time out to help you with chores that are your responsibility? As a mother, you want them to excel and do better than you did and while having them do their own chores like: cleaning their room or cleaning their bathroom and doing their laundry is acceptable, things like: taking me to doctors appointments because I can’t drive, or making dinner because I can’t, or picking up and taking siblings here and there because again, I can’t drive, make you feel guilty. I didn’t have children so they could take care of me. My chronic pain took away some aspects of motherhood, and also took away some aspects of my kids’ childhood.

I’ve taken other pain medications. A whole bunch that I either didn’t tolerate in some fashion or simply didn’t work as well as the opioids. Do I want to take opioids? Not especially. I take a lot of medication. I often worry about the effect these medicines are having on my liver. After taking them for nearly 4yrs., I also know their effectiveness is beginning to wane. They are just not doing what they used to which leaves me in pain again, more often than when I first began taking them. This, of course, makes me wonder what next? What drug will they eventually try that will also wane too after a few years? But the flip side, the person still dwelling within me who wants to experience as much life as I possibly can and enjoy it without being in crippling pain, doesn’t care. Whatever the next opioid may be, I will try it because to not take these drugs means to give up and die. I’m not ready yet. Sorry.

Which brings me to this opioid war. I get it. I get that people have lost loved ones and I understand how tragic and senseless it is. What I do not understand and what I read and hear time, and time again, is how opioids should be abolished. But which opioids exactly? This is the blurry line which is affecting all pain patients and which angers me. For example this quote from CBS News: “Approximately three-fourths of all drug overdose deaths are now caused by opioids — a class of drugs that includes prescription painkillers as well as heroin and potent synthetic versions like fentanyl.” [https://www.cbsnews.com/news/opioids-drug-overdose-killed-more-americans-last-year-than-the-vietnam-war/] You see information like this and the average reader is only seeing the first part: three-fourths of all drug overdose deaths are being caused by opioids. Lost in this message is the latter part, explaining that these drugs include prescriptions, heroin and synthetic versions like fentanyl. Neither do you hear things like: Synthetic opioids, like fentanyl, are the main driver of drug overdose deaths, making up more than 28,000 of opioid-related deaths in 2017.” And then even less are you hearing this: “Opioid prescribing has also been on the decline since 2010 and the number of prescriptions filled at retail pharmacies is at a 15-year low, according to the U.S. Food and Drug Administration.” [1]

These missing parts are an incredibly important part of the bigger picture. The bigger picture which includes patients who are suffering and needlessly dying because they aren’t receiving adequate pain treatment. We’ve gone from a period back in the 90’s which (and no one argues this), people were being over-prescribed opioids, to a period now, on the opposite of the spectrum, where people are being under-prescribed. Both sides of these extremes have consequences and we are seeing them now, in the preventable deaths of patients who were under-prescribed pain medication. You are hearing about cancer patients being denied morphine, until their final weeks after terrible suffering before their deaths. [2][3]

You are also hearing about post-surgical patients being given only Tylenol for hip replacement surgeries, despite the amount of pain afterwards. I’ve had total left hip replacement and I can’t imagine being able to do the required physical therapy without the opioids I was given, and the unnecessary suffering truly boggles my mind. [4]

I say you are hearing and seeing this information, but the truth of the matter is that you aren’t hearing or seeing about it as much as you should be and because of that, chronic pain patients are suffering out there. People in my community are dying because of the lack of information and the mis-information regarding opioids. Every time I am on social media, I will find articles being discussed about deaths caused by opioids. Just skimming through comments, I will read things like: It’s big pharma’s fault, all they care about is money; There’s a lack of morality within society when kids are dying from opioids and they continue to be doled out; Opioids need to be abolished; There wouldn’t be addicts if the drug was taken away. Comments like these, make my heart sink because of the black and white nature with which this Opioid Hysteria is being viewed. Opioids are not the enemy. Patients who need these drugs are not the addicts (though admittedly, a small percentage from this group do become addicts) and people who need these drugs are dying, because doctors are being criminalized for prescribing them, losing their jobs and making it more and more difficult for pain patients to be treated. The world had gone crazy and those suffering are being made to suffer more.

I am a pain patient. I take opioids and I’m un-apologetic about taking them. I’ll also continue to fight for those who may not be able to themselves, to end the needless deaths and suffering which have become the cost to this ridiculous war waged on opioids.

[1] https://www.superiortelegram.com/news/government-and-politics/4574090-advocate-opioid-crackdown-had-chilling-effect-those-chronic

[2] https://www.reuters.com/article/us-health-cancer-idUSKCN1PP26X

[3] https://www.bendbulletin.com/localstate/6033839-151/opioid-limits-hit-hospice-cancer-patients

[4] https://www.acsh.org/news/2019/03/13/oral-and-iv-tylenol-work-equally-well-hip-replacement-pain-do-they-work-all-13877

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Young holds Tobacco 21 Press Conference in Lafayette

https://www.young.senate.gov/newsroom/press-releases/photos-young-holds-tobacco-21-press-conference-in-lafayette-

LAFAYETTE, Ind. – Today, U.S. Senator Todd Young (R-Ind.) joined doctors and public health officials for a press conference at IU Health Arnett Hospital in Lafayette regarding his new Tobacco to 21 Act. The bipartisan legislation would prohibit the sale of tobacco products, including e-cigarettes, to anyone under the age of 21.

“With smoking and vaping on the rise, we can no longer ignore tobacco’s detrimental side effects. By raising the smoking age to 21, we can save more than 220,000 lives and prevent countless individuals from suffering the damaging side effects of tobacco usage,” said Senator Young.

Senator Young recently introduced the Tobacco to 21 Act along with Senators Brian Schatz (D-Hawaii), Dick Durbin (D-Ill.) and Mitt Romney (R-Utah). The bipartisan bill has received widespread support by health organizations and advocates, and recent polling shows that 75 percent of Hoosiers support raising the legal age.

The South Bend Tribune, Fort Wayne Journal Gazette, Terre Haute Tribune-Star, Indiana Business Journal, and KPC Newspapers in northeast Indiana have all endorsed the Tobacco to 21 Act. Senator Young also penned an op-ed for CNN and issued a video regarding the need for this legislation.

The Tobacco to 21 Act is supported by the Academic Pediatric Association, American Academy of Pediatrics, American Cancer Society Cancer Action Network, American College of Preventive Medicine, American Heart Association, American Lung Association, American Pediatric Society, American Public Health Association, Association of Asian Pacific Community Health Organizations, Association of Maternal & Child Health Programs, Association of Medical School Pediatric Department Chairs, Association of Schools and Programs of Public Health, Campaign for Tobacco-Free Kids, Community Anti-Drug Coalitions of America, First Focus Campaign for Children, National African-American Tobacco Prevention Network, Pediatric Policy Council, Society for Pediatric Research, American College of Obstetricians and Gynecologists, National Association of County and City Health Officials, and Trust for America’s Health.

who believes that changing the age at which a person can smoke moves up BY THREE YEARS COULD SAVE 220,000 lives.. of course they don’t mention a time frame that this will happen over.  If you consider the typical smoker will do so for 40 yrs … so that would break down to 15 lives a day… there is reportedly 450,000/yr deaths from the use of tobacco. On the positive side, maybe Congress has become “smart enough” to understand that prohibition doesn’t work or maybe they just can’t figure how to replace all the “sin tax money” that comes from tobacco ?  Of course we have 22 veteran that commit suicide EVERY DAY, but not much seems to move forward on trying to address this issue.

None of us really know how many people die from illegal opiate OD’s or commit suicide from lack of proper pain management.. but since abt 40% of Congress is attorneys they continue to treat opiate abuse as a CRIME that the judicial has considered it since 1917.   Isn’t it reassuring that the DOJ is still functioning under a 100+ year old opinion ?

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Researchers Are Creating New Vaccine to Target Opioid Addiction

https://www.drugtopics.com/vaccination-and-immunization/researchers-are-creating-new-vaccine-target-opioid-addiction?rememberme=1&elq_mid=7310&elq_cid=740438&GUID=9B8F9F37-85BB-43FB-9637-C2C4134B59EC

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https://www.facebook.com/markmusheribsen/videos/10218388775846116/?notif_id=1560792857146105&notif_t=live_video_explicit

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https://kfor.com/2019/06/13/defense-questions-key-witness-for-state-in-opioid-trial/

NORMAN, Okla. — A key witness in the ongoing trial against the nation’s largest drugmaker described the company as the “kingpin” in the state’s opioid crisis.

Dr. Andrew Kolodny, co-director of opioid policy research at Brandeis University, testified Thursday he believed Johnson & Johnson was a “major cause” of the epidemic. The company is being sued by the state of Oklahoma, accused of fueling the opioid epidemic through deceptive marketing and downplaying the risks of addiction.

“In 2007, when Purdue Pharma was convicted criminally of claiming that OxyContin was less addictive because of its extended release formulation, Johnson & Johnson continued to sell opium and oxycodone to Purdue Pharma and continued to do exactly what Purdue Pharma was convicted criminally of doing,” Kolodny said. “It was Johnson & Johnson’s opium that flooded into the United States.”

He added the company then continued to promote their own products as having “lower abuse potential.”

Kolodny first took the stand on Tuesday after the state presented him as an expert witness, but defense attorneys objected to him being considered an expert on the subject. They argued Kolodny was not qualified to testify on the cause of the epidemic because his research primarily relies on correlation, not causation.

“Those are different things,” attorney Michael Yoder stated.

On Thursday, the defense continued to build their argument that Kolodny has not provided any evidence showing addiction or deaths in Oklahoma were actually caused by a doctor misled into prescribing their drugs.

Yoder: “You have some strongly held personal opinions. I’m not asking what they are right now. I’m just asking you if you agree that there are strongly held opinions.”

Dr. Kolodny: “Yes, I would imagine I would have some strongly held opinions.”

The trial continues on Friday.

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Local police increasingly clash with federal law enforcement on body cameras

https://www.axios.com/local-police-federal-agents-body-cameras-e798279c-aecb-4303-84ef-cf46dbd2f320.html

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Chronic Pain Patients To “Assemble” at the CDC on June 21st

www.nationalpainreport.com/chronic-pain-patients-to-assemble-at-the-cdc-on-june-21st-8840092.html

An Indianapolis woman is leading a group of chronic pain patient for a two-hour event in front of the Centers for Disease Control Office in Atlanta on Friday June 21^st.

Johnna Magers says that patients—some of whom who will be in wheelchairs– from Texas, Indiana, Kentucky and Colorado are already planning to go.

The group is called Chronic Pain Warriors Unite for Our Right to Pain Management.

The idea she said is “we want to educate the CDC” about the impact its Guideline for Opioid Prescribing for Chronic Pain has had on patients.

In April, CDC issued a statement that stated that some policies, practices attributed to the Guideline are inconsistent with its recommendations. Here’s the media statement.

But for many pain patients that moderation was too little too late.

Magers has been promoting the event thanks to number of Facebook pain groups and others and says there’s understandably lots of enthusiasm for the getting more visibility for the chronic pain patient point of view.

The Facebook page for the event is CDC Protest for Pain Patients. As the Facebook page says, “We will have an assembly peacefully to show our dissatisfaction of the CDC 2016 guidelines that have affected millions of lives.”

In addition, she has what she described as a 40-page list of chronic pain patients who have taken their lives in the last several years and will have some cut-outs to commemorate them in their line of protestors in Atlanta Saturday.

Magers is a 50-year old woman who has battled chronic pain for 15 years—at times the pain was so debilitating she could barely work. “I know that I’m going to need pain medicine for the rest of my life.”

The group—which has already secured an assembly permit–will gather at Clifton Road and CDC Parkway in Atlanta. The event will also be live streamed on social media.

Magers wanted to give credit to a number of groups that have been supporting this effort including Pain is Pain, Chronic Pain Voices, CCP News Source, Chronic Pain Support-Pain Doctor.com, International Support Fibromyalgia Network, Adele Faba Foundation for CRPS/PAIN, Refugees of the Opioid Crisis, Don’t Punish Pain Rally Organization, Chronic Pain Patients Lives Matter, United in Pain, Pain in the USA, Pain Patients United Community, Chronic Pain Management Forum, The National Pain Report, PAW Pain Advocate Warriors, Richard A. “Red” Lawhern Ph.D., Steve Ariens P.D.R.Ph., Leah Houston, M.D., and Arnold Feldman, M.D.

Magers is looking for more people. If you want to find out more about the event or contact her directly, email her chronicpainpatients@gmail.com or visit their Facebook page

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