TODAY IS….. WHO WILL NOT BE HERE TOMORROW

Today is 07/20/2017

2016 in review … what killed us

2600 Americans will die EVERY DAY – from various reasons

2700 people  WILL ATTEMPT SUICIDE

140 will be SUCCESSFUL – including 20 veterans

270 will die from hospital acquired antibiotic resistant “bug” because staff won’t properly wash hands and/or proper infection control.

350 will die from their use/abuse of the drug ALCOHOL

1200 will die from their use/abuse of the drug NICOTINE

1400 will contract C-DIF from Hospital or Nursing home because staff doesn’t properly wash their hands are adhere to infection control       80 WILL DIE mostly elderly.

850 will die from OBESITY

700 will die from medical errors

150 will die from Flu/Pneumonia

80 will die from Homicide

80 will die in car accidents

70 From ALL DRUG ABUSE


I am being completely weaned off my meds, & suspect I will kill myself with the amount of pain I am in, & will be by the time this is over (the wean that is). Already can’t function.


My husband committed suicide after being abandoned by his pain dr.


Please pray for me as I am on the brink of suicide! I don’t want to die but can’t handle the pain anymore! The doctor that I am currently seeing will not give me enough pills to last all month every month… I have to wait until Oct to get in with a pain management doctor whom I already know by others that I know sees this doctor that he will help me, need prayer to hold on until oct… I keep thinking of my family who needs me hear.


“We just lost another intractable member of our support group two nights ago. She committed suicide because her medications were taken away for interstitial cystitis (a horribly painful bladder condition) and pudendal neuralgia, both of which she had battled for years


D D., journalist and prescribed fentanyl patient for a dozen years joined me on air last weekend with her husband and spoke of her suicide plan should the only relief from constant agony be heavily reduced or taken away.


I was told last Friday that my Dr. will be tapering my meds again . When I told him I didn’t think my body could take another lowering he stated ” it wasn’t my
License on the line”, I stated ” no , but it’s my life on the line”!!!!! I can not continue to live this way . I can not continue to suffer in agony when my medications and dose where working just fine before and I was a productive member of society . I can no longer take this. I have a plan in place to end my life myself When I am forced to reduce my Medications again . I just can’t do it anymore .


 

The WAR on Pain Patients Continues ! Politicians Don’t Care People Are Living in PAIN !

The WAR on Pain Patients Continues ! Politicians Don’t Care People Are Living in PAIN !

https://www.dailykos.com/stories/2017/7/8/1678907/-The-WAR-on-Pain-Patients-Continues-Politicians-Don-t-Care-People-Are-Living-in-PAIN

  I have not written a Pain diary in a little while. I have been kind of busy dealing with my own medical issues including continued pain and cancer. However I have been keeping up on what is going on around the country in regards to Pain Patients. I have to say I am so saddened by the current atmosphere of negativity towards Pain Patients as well as the demonization of opioids by those in government like the CDC, the DEA and even idiot politicians who are reacting to the so called opioid epidemic as they react to most things, by doing the worst possible things that won’t fix the situation. So many states are passing Opioid prescription laws based off of the supposedly “Voluntary” CDC guidelines it is ridiculous. Many are including exceptions for chronic pain patients but many are not. Meanwhile we have doctors dumping patients as they run in fear of the DEA investigating them. The overall result is many chronic pain sufferers are feelling like the Government has declared war on THEM specifically and individually ! 

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Can you imagine what it is like to feel your government has declared war on you ? It sure as hell is not fun ! Study after study have shown that chronic pain patients are the least likeliest to become addicts with rates of addiction in the studies from 1% to about 5%. The CDC’s own information is showing that illegal Fentanyl has replaced prescription opioids as the leading cause of opioid deaths yet the persecution continues for chronic pain patients while doing exactly ZERO to help with the addiction issues facing America. Politicians at both the State and Federal level are cutting funds to addiction counseling and treatment at a time when addictions are rising. Politicians on all levels are

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scrambling to be seen as doing something to combat the addiction menace yet they don’t want to spend money to do that ! The result is chronic pain patients are being made the scapegoats and that is resulting in a rise of pain patients receiving less treatment or even no treatment to combat their daily pain. Can anyone guess what that will lead to and has been leading to ? Yep ! A rise in chronic pain patients taking their own lives. This is adding to the statistics because the idiots at the CDC are including them into the opioid death stats. 

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     The CDC guidelines rolled out last year are a nightmare for chronic pain patients. As I stated above these are supposed to be Voluntary yet we have politicians pushing the 90 MED dosing limits as law plus Insurance companies are getting into the act as well. What is worse is that those very guidelines were developed not with input from those directly involved in the care of chronic pain but rather almost exclusively by a group called PROP. This group runs a bunch of addiction treatment centers and has a very vested interest in getting everyone off of opioids as it will greatly increase their business ! Every single chronic pain patient who has been on opioids for any length of time will be dependent upon the

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drugs. This is not to say that they are addicted as Andrew Kolodny insists in every possible forum he can, but rather it means that when the drugs are withdrawn the patient will fall into withdrawal. To Kolodny this means one thing ! ADDICTION ! To the rest of the thinking medical profession it means that the person has basically gotten used to having the drugs and care needs to be used when lowering the dose or cutting it off all together. Some prescribers advocates not for titration down but rather cold turkey yanking of all opioids. ( Titration is the stepping down or up of a dose of medicine to find the best result for the patient or in the case of down to counter the withdrawal symptoms so they are not life threatening. ) Yes going cold turkey from a high dose of opioids can be life threatening fro the withdrawal symptoms. This does not even cover the fact that the patient will have a return to high levels of pain. Pain that they had thought and HOPED was behind them. It also means a loss of quality of life. It means no longer working or in some cases even getting out of bed. To many chronic pain patients this is a DEATH SENTENCE and all because a group of greedy doctors decided to increase their business by proclaiming opioids BAD !  

    Let’s take a look at what chronic pain feels like ! Most people are lucky enough to have had no real experience with pain. Some may have experience with acute pain. This is short lived pain such as breaking an arm or other bone. Unfortunately sometimes acute pain turns into chronic pain and other times there is no real start to the pain. No one things that can be pointed at to say There is the cause” ! This is more likely in the case of back injuries where the damage is not done in one big event but rather by misuse or abuse over time, lifting wrong, doing more than you should and so on. The spine becomes more and more damaged over time leading to more and more pain. This is a lot of my chronic pain. I was a dumbass when I was younger and figured I could do anything. Yeah where is my time machine so I can go back and kick myself in the ass ? Because of that stupidity I have endured multiple operations on my back as well as multiple procedures such as epidurals and RF Ablations and other shots to try and block the pain. I have also endured living with a pain level of 8 for years. Most people would have headed for the ER when it got above 6 or 7 but chronic pain patients have learned how to function at that level of pain. To us it seems NORMAL ! Think about that for a minute. Such intense pain that you should go to the ER is your normal state. What you wake up in the morning to ( If you were able to sleep at all. I was lucky if I got 4 hours a night) and what you go to bed at night with. It NEVER goes away ! It NEVER Stops ! It changes your thinking. You become depressed. Your life gets smaller. You stop going out with friends or family. You may miss work a lot ! This causes you to become more depressed. You do what you have to get through each day and then do it again the next day. That kind of life SUCKS ! You jump at every chance to get the pain down. Trying new therapies until you have tried them all. Then you find a doctor who will prescribe an opioid to you and the pain drops. You work with the doctor and increase your dosage and now the pain is manageable, it is down to a 4 or less if you are lucky. You have your life back. Now you have someone who wants to end all of that and you can do nothing to stop them. It’s not because you are bad or did anything wrong other than to use opioids to get a handle on your pain. You have become almost a criminal in the eyes of society. Doctors and others in the medical profession suddenly are looking at you like you are a drug addict. You have to go to multiple pharmacies just to get your script filled while dealing with the looks and accusations both silent and aloud of the pharmacy staff. Your life still SUCKS but at least the pain is down. That is what chronic pain looks like and feels like. Before you condemn someone for using opioids as they have been prescribed by a doctor, you might want to think for a moment.Think if you want to be stigmatized for trying to get out of pain. 

dark net site AlphaBay – shut down by DEA… 40,000 active sellers and 200,000 users.. back in business by MONDAY ?

US DEA Says They Shut Down “Dark Net” Market for Heroin, Fentanyl

www.nwigazette.com/2017/07/20/us-dea-says-they-shut-down-dark-net-market-for-heroin-fentanyl/

“This is likely one of the most important criminal investigations of the year taking down the largest dark net marketplace in history”, said Attorney General Jeff Sessions. Guns, drugs and illegal documents allegedly traded on “dark net” site Alphabay

July 20, 2017-The United States Drug Enforcement Administration announced today that they shut down a “dark net site” which they allege was linked to the illegal sale of heroin and fentanyl. “The Justice Department today announced the seizure of the largest criminal marketplace on the Internet, AlphaBay, which operated for over two years on the dark web and was used to sell deadly illegal drugs, stolen and fraudulent identification documents and access devices, counterfeit goods, malware and other computer hacking tools, firearms, and toxic chemicals throughout the world” the agency announced.

The massive international criminal investigation was led by law enforcement officials from the United States and included authorities in Thailand, the Netherlands, Lithuania, Canada, the United Kingdom, and France, as
well as the European law enforcement agency Europol. “On July 5, Alexandre Cazes aka Alpha02 and Admin, 25, a Canadian citizen residing in Thailand, was arrested by Thai authorities on behalf of the United States for his role as the creator and administrator of AlphaBay. On July 12, Cazes apparently took his own life while in custody in Thailand. Cazes was charged in an indictment (1:17-CR-00144-LJO), filed in the Eastern District of California on June 1, with one count of conspiracy to engage in racketeering, one count of conspiracy to distribute narcotics, six counts of distribution of narcotics, one count of conspiracy to commit identity theft, four counts of unlawful transfer of false identification documents, one count of conspiracy to commit access device fraud, one count of trafficking in device making equipment, and one count of money laundering conspiracy. Law enforcement authorities in the United States worked with numerous foreign partners to freeze and preserve millions of dollars worth of cryptocurrencies that were the subject of forfeiture counts in the indictment, and that represent the proceeds of the AlphaBay organizations illegal activities” officials stated.

“On July 19, the U.S. Attorneys Office for the Eastern District of California filed a civil forfeiture complaint against Alexandre Cazes and his wife’s assets located throughout the world, including in Thailand, Cyprus, Lichtenstein, and Antigua & Barbuda. Cazes and his wife amassed numerous high value assets, including luxury
vehicles, residences and a hotel in Thailand. Cazes also possessed millions of dollars in cryptocurrency, which has been seized by the FBI and the Drug Enforcement Administration (DEA)” the statement continues.

This is likely one of the most important criminal investigations of the year taking down the largest dark net marketplace in history, said Attorney General Jeff Sessions. DEA alleges that Alphabay boasted over 40,000 active sellers and 200,000 users. “Around the time of takedown, there were over 250,000 listings for illegal drugs and toxic chemicals on AlphaBay, and over 100,000 listings for stolen and fraudulent identification documents and access devices, counterfeit goods, malware and other computer hacking tools, firearms and fraudulent services.”

Officials say the investigation is related to numerous pending prosecutions in the United States and investigation is ongoing. Charges contained in an indictment or complaint are merely allegations, and the defendant is presumed innocent unless and until proven guilty beyond a reasonable doubt in a court of law.

Is AG Session’s days numbered ?

Trump administration wants to rollback controversial civil forfeiture limits

http://www.wtsp.com/news/politics/trump-administration-wants-to-rollback-controversial-civil-forfeiture-laws/457901213

U.S. Attorney General Jeff Sessions said this week that the new administration plans on increasing the use of civil asset forfeiture, a controversial technique that allows police to seize cars, cash, and other property from individuals, even if they weren’t charged with a crime.

10Investigates was one of many news outlets to expose civil forfeiture abuses in recent years, and in 2015, the Obama administration drew praise from many Democrats and Republicans after it tightened some of the federal rules on seizures, aiming to limit abuses.

In the last decade alone, the Drug Enforcement Administration (DEA) reports seizing more than $3 billion from individuals who were not charged with crimes.

But Sessions said by increasing the amount of property seized, the government could better-target drug traffickers.

That drew sharp criticisms from the Institute for Justice Director, whose senior attorney, Darpana Sheth, said in a statement, “Civil forfeiture is inherently abusive. No one should lose his or her property without being first convicted of a crime, let alone charged with one. The only safeguard to protect Americans from civil forfeiture is to eliminate its use altogether. The Department of Justice’s supposed safeguards amount to little more than window dressing of an otherwise outrageous abuse of power.

“We have consistently warned that the modest reforms put in place in 2015 could be rolled back with the stroke of a pen—and that is precisely what Attorney General Sessions has done today. The DOJ’s directive, announced to a room full of law enforcement officials who stand to reap the profits of this new policy, shows the fundamental absurdity of a system of justice which prioritizes funding law enforcement over protecting constitutional rights or fighting crime.”

Following 10Investigates’ civil forfeiture stories in 2015, Florida joined 23 other states in passing recent reforms on the issue.  Florida law now requires a conviction for law enforcement agencies to permanently keep your property, but loosening the federal restrictions could open a new window for Florida law enforcement agencies to seize assets under federal law.

Find 10Investigates’ Noah Pransky on Facebook or follow his updates on Twitter. Send your story tips confidentially to npransky@wtsp.com.

Kolodny: “..begin to take away the painkillers and start treating these patients for narcotic addiction”

Dr. Shawna Yates is Medical Director of the Southwest Montana Community Health CenterNew Opioid Guidelines Redefining ‘Compassion’ For Montana Doctors

http://mtpr.org/post/new-opioid-guidelines-redefining-compassion-montana-doctors

 

As the nation faces an epidemic of opioid drug abuse after a decade of aggressively prescribing narcotics , Montana doctors are becoming more cautious about giving painkillers to chronic pain patients.

It’s changing some patients ability to get treatment and what is considered compassionate care for chronic pain.

Last spring, the federal Centers for Disease Control and Prevention issued new opioid prescribing guidelines for doctors, designed to address the national epidemic.

In response, Butte Doctor Shawna Yates, the Medical Director of Southwest Montana Community Health Center, sent a letter to pain patients saying the clinic would no longer prescribe high doses of opioid painkillers.

“For me, personally, I really do try to stress that I believe in their pain,” Yates says, “that I understand where the concern that they’re having is coming from.”

But Yates says, her clinic’s new policies for the highly addictive drugs have caused a lot of patients to seek care elsewhere.

“I’ve said it more often in the last six months than ever before. I’m not leaving them. If they decide to leave, they’re leaving me.”

The CDC guidelines encourage primary care doctors to become less dependent on opioid medications for treating chronic pain because of the drugs’ serious side effects, including addiction.

The Butte clinic started tightening its prescribing policies back when it had about 700 pain patients coming in for treatment, years before the CDC released its guidelines.

It did things the CDC guidelines would eventually call for, like random drug tests, to make sure patients weren’t abusing their medication, or taking additional drugs. The clinic also required patients to only fill their prescriptions at one pharmacy.

“And many of those patients left” Yates’ clinic, she says. “There are many patients that aren’t willing to follow those recommendations.”

After the clinic put in the additional rules for pain treatment, and sent out a letter telling patients the clinic was adopting the federal guidelines, implementing a cap on how many pills it prescribed, about 400 patients left the clinic.

Doctor Andrew Kolodny, with the national advocacy group Physicians for Responsible Opioid Prescribing, says lowering the limit on prescription painkillers is a good policy and it’ll help patients who are harmed by high doses.

“For patients who are being required to taper down who are on high doses, that’s appropriate,” Kolodny says.

Kolodny is also the co-director of the opioids policy research collaborative at Brandeis University in Boston.

“As Doctors start to figure out that we shouldn’t have been prescribing in this way, these patients are at risk of being cut off from a legal supply of opioids,” Kolodny says. “And that’s why we really do need a compassionate response for that population.”

Kolodny says the problem isn’t people using opioids because it makes them feel good, snagging a few pills to get a quick high. The issue, he says, is the millions of Americans who were legally supplied, and hooked, on these drugs during an era of medicine where opioids were believed to be a good option to treat pain.

Now, Kolodny says the most compassionate thing doctors can do is slowly, and safely, begin to take away the painkillers and start treating these patients for narcotic addiction. Because he, and some doctors around Montana, say regular use of opioids can actually make pain worse.

But pain patients like Dalaine Propp don’t like being told they drug abusers.

“We either do what they say we do or we get kicked to the curb,” Propp says.

Propp is a member a pain patient support group in Great Falls. They got together because they feel they’re being treated unfairly. There’s about 100 members in the group’s Facebook page, and this spring, a couple dozen people showed up to the group’s first meeting.

Propp says she’s tried alternatives to opioids.

“I did the physical therapy, we looked at the surgery option, we’ve done injections, and unfortunately the only thing that has kept me working and kept me going was the opiate medication,” she says. “I think this whole thing with the CDC has scared even regular practitioners to even start people on any kind of pain regime.”

“I have no doubt that there are patients who are telling you that they feel agonizing pain,” Kolodny says,”and then they take their opioid and they’re able to get out of bed and function and brush their teeth and have some type of life, and that without the opioid they wouldn’t be able to get out of bed and they’d feel like they want to commit suicide.

“I can tell you that’s exactly how people who are heroin users who are opiate addicted feel until you use your first dose of heroin in the morning you’re feeling agonizing pain and discomfort,” he says.

Kolodny says too few doctors who prescribe opioids also prescribe drugs that can help patients wean off the painkillers. If doctors want to help chronic pain patients move past opioids, he says, more doctors need that addiction medication training.

There are patients who say that once they got off opioids, it became easier to deal with their underlying pain issue, some describe it like a fog being cleared.

At the clinic where Doctor Shawna Yates works, in Butte, patients are required to go to mental health specialists and encouraged to keep up a good diet and get enough sleep.

“I think the biggest thing we need to do moving forward as a culture is find better ways to treat pain,” Yates says.

“The hardest part is to know that there are people out there that are not getting good pain relief, and with a culture that is getting older and that are suffering, that’s the part that bothers me,” she says. “We can take stuff away, and we can know that there is harm related to this. I don’t think the biggest challenge is taking these away. I think the biggest challenge is finding out what we are going to do in place of it.”

Yates says as she, and other doctors learn more about how to treat pain, she wants patients to know she’s not abandoning their care, even if that’s exactly how some patients see it.

Dr. Kolodny: “Outside of palliative care, dangerously high doses should be reduced even if patient refuses”

Dr. Andrew Kolodny has issued an epic challenge to the pain patient community. He wants to know — “Outside of palliative care, dangerously high doses should be reduced even if patient refuses. Where exactly is this done in a risky way?” and, “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion.” Of course, pain patients must respond. If you have been forced to taper and you have been harmed by a specific doctor or clinic, please issue a tweet in reply to Dr. Kolodny @andrewkolodny. If you don’t have a twitter account, now is a good time to get one. Don’t be shy. Don’t hold back. Tell it like you have experienced it in 140 characters. COPY, PASTE, SHARE.

WV Board of Pharmacy dismisses director

WV Board of Pharmacy dismisses director

http://www.wvgazettemail.com/news-health/20170718/wv-board-of-pharmacy-dismisses-director

The West Virginia Board of Pharmacy has dismissed its executive director amid a review of rules that require drug distributors to report on pharmacies that order a “suspicious” number of painkillers and other powerful prescription medications.

David Potters, who also was the pharmacy board’s general counsel, departed after 10 years with the agency.

Asked for the reason for Potters’ dismissal, board Chairman Dennis Lewis said, “I’m not at liberty to discuss that. You just don’t do that.”

The board has appointed Mike Goff, an agency administrator and former West Virginia State Police trooper, as acting executive director. Goff oversees the state’s prescription monitoring database. The board plans to advertise for a new general counsel to handle legal matters.

Earlier this year, the pharmacy board hired a chief financial officer for the first time — a move designed to lessen Potters’ workload. The board dismissed Potters during an emergency meeting late last month. He declined to comment Tuesday.

In December, a Gazette-Mail investigation found that the pharmacy board failed to enforce rules to report suspicious orders for controlled substances in West Virginia. Potters acknowledged that the rules, which were adopted years before he was hired, weren’t on the agency’s radar.

Those same years, the pharmacy board was giving spotless inspection reviews to small-town pharmacies that ordered more pills than could be possibly taken by people who really needed medicine for pain, the newspaper found.

In response, the board has spent the past six months developing a reporting system to flag suspect drug orders.

Drug wholesale distributors — companies that ship drugs from manufacturers to pharmacies — are cooperating with the review, Lewis said.

 “We’ve been pushing very hard on the suspicious orders, to get that up and as strong as possible,” Lewis said. “We’ve been working on that as hard as we can. It takes more time than we would like.”

The board is developing a standard form for drug distributors to report suspicious orders from pharmacies for painkillers and anti-anxiety medications, Lewis said. The reporting system is designed to curb the proliferation of controlled substances.

Drug distributors must submit the reports monthly, according to the board’s proposed rules.

“We’ll use the reports to make an evaluation of what is really going on,” Lewis said. “We want something that is readable and usable.”

The proposed changes also will require wholesalers to disclose whether they have had any questionable drug orders from pharmacies.

“We’re wanting them to do ‘zero’ reporting if they don’t have any suspicious orders, or if they do have them, we want them,” Lewis said. “And we want to be able to pin down what the suspicious order is for.”

Also, the board plans to require wholesalers to report when they refuse to ship controlled substances to specific pharmacies.

“If they’re going to cut off a pharmacy, we want to know about it,” Lewis said.

The pharmacy board is expected to discuss the proposed rules to track suspicious drug orders at a meeting next week.

Reach Eric Eyre at ericeyre@wvgazettemail.com, 304-348-4869 or follow @ericeyre on Twitter.

Isn’t it a number of different city, county, state agencies that are contemplating suing just about anyone and everyone in the prescription distribution system… accusing them of being the cause of the “opiate epidemic” in WV ?

I think that it was  William Shakespeare in the 1600 play Hamlet that stated  “The lady doth protest too much, methinks

Perhaps those in WV… should first clean up their own house before they start suing others for their problems ?

 

Pharmacist: I was COMFORTABLE with a high opiate dose BEFORE SOMEONE TOLD ME THAT I WASN’T ?

I read your article several times and I am really upset over what transpired tonight at CVS when trying to fill my script for OxyContin 80mg. I take it 3x a day as the time released med and Oxycodone 30 mg for short acting  medicine for my chronic pain too many diagnosis to list. Been a chronic care patient for 13 years. Never had a problem until recently.

I switched from my mail order to going to my local pharmacies as it was getting expensive trying to pay for ups overnight.

It Seems that this female CVS pharmacist who gladly filled my scripts last month and said it would not be a problem now tells me she thinks I am taking too many pills and refused to fill my scripts.

I was just in an auto accident and fractured my wrist, along with many other injuries. I Was in severe pain and on my last day of pills. She said she thought my Dr was overprescribing and wanted to talk to him. Well he was out of the country getting married and would not be back for two weeks so she let me go and did not give two shits that I was going to be without my meds. In pain and going through withdrawals. I don’t know what to do.

I drive to 30 different pharmacies. All walgreens and cvs pharmacies and they all said they did not have my medicine. I know that’s a lie!!!

30 stores and not one had even one of my scripts?

I am now in severe pain. I am ready to go to the ER but I need my scripts filled.

If my Dr can’t talk to anyone for two weeks what am I supposed to do?

What action can I take against this pharmacist who made her own decision like she is my Dr and question my Drs valid script? Pain meds I have been on for years. I never had this happen before.

Help. 

America: we only care about human rights violations in other nations ?

I am a 60 yr old female from ME, I have had a sleep disorder that is genetically related my paternal side with my g-mother, my dad, his 2 sisters and sadly i passed it to our son who i see going thru struggles in treatment but he is not as severe as i am. i was able to control it in my teens by taking a daily nap but around my 30’s it seemed to change overnite with sleep episodes while driving ,while standing eating etcc and this caused multiple auto accidents and falls with fractures and the impact on my marriage by not being able to go places with my husband, surprisingly we are still together, but my children beared the worse like always watching me if my head started to nod at the wheel and they would yell and shake me, and i am embarrassed to tell you that during those cold snowy ME winters my kids waited for me to pick them up as thay had to stay over for some activity, i was suppose to be there at 3pm but after work i layed downed set alarm and never woke til 6pm never hearing the phone ring and here thye were out in the cold. 

But what floors me my doctors knew all that was gaing on and my 10 MSLT/PSG sleep studies that i was put thru all showed the same results sleep latency 0.5-1 min to sleep but no REM onset. the positive HLA test thye said meant nothing. i was told “BE CAREFUL DRIVING” Thye refused me stimulants for fear addiction, i had been contacting Stanford University Narcolepsy research on my untreated disease and the fears my docotrs had even though these specialist claimed and boosted how they were the only ME expert  in Narcolepsy?? 

Well when i told the doctor that Dr Mignot from Stanford would speak with my doctors to lessen there fear and to educate them about the research and how important it is to treat the symptoms asap , he also stated that  many doctors are unaware that each patient has to be treated individual to lessen the symptoms and for safety to avoid accidents and that the PDR was not appropriate as many need much higher doses and that addiction was not evident in Narcolepsy research. My doctor flatly refused as did 2 others and they were not happy with my suggestion of working with Dr Mignot, they took it as a insult so i was never followed up and a letter by one wrote derogatory remarks about my personality and that all Narcoleptics were “hard to deal with as they have psych issues” I was so angery . I was a RN and loved my career and caring for patients but i can not advocate for myself. i finally was treated when i went to live in AZ by a Indian doctor that was familar with this disease, he put me on Desoxyn up to 60 mg day and i could not believe i had a life again, but upon return to Maine i was not given this med and sent to a shrink who gave me Dexedrine 40 mg and whjile on that i got into another accident rearending a car as the doctor made me drive 1 hour away knowing my driving history. Know i am dealing with chronic pain have MGUS, urine protein 498, IgG low and Kappa/Lambda FLC and Kappa FLC high with beta fraction abnormal , i have widespread livedo vasculopathy or livedo as it was diagnosed “google search” my face also get pasty white which my family states i look like dead person walking, i am bedridden practically and also hgad a fully detached ball socket R shoulder that was missed in ME and found in Fl 1st viisit , had surgery 4 disposible rods placed in 2013 and rods still there , had mri which showed severe Chrondomalacia with raggeity bicep but my surgeon refuses surgery asked why he said your wife shoulder was detached for too long and the damage was severe and she must of been in severe pain, i also had a Catacholamine attck and was kept overnight . the opiods i am on help but ties i could use more and my pain doctor says i can do no more for you. i am on Percocet 10/325 4 day and Morphine ER 3 day. poor quality life not dependable to go places as i get to much pain and ask to leave, i do not eat much and i would rather die than live like i am as i have no joy even my children i dread to come visit as i am bed , it takes everything out of me to sit up and viisit, i am catholic so suicide is not a optiion for me, i have asked Pallaitive care but get a deer in headlite and told i am too young. in ME i had to fly back alone to FL as Govener made patients like me unable to get meds. what do u suggest. i am on ssdi medicare

Daughters: Mother died “excruciating” death she didn’t want

Family sues UCSF for agreeing, then refusing to help woman die

http://www.mercurynews.com/2017/07/17/family-sues-ucsf-for-agreeing-then-refusing-to-help-woman-die/

In what may be the first-of-its-kind lawsuit related to California’s End of Life Option Act, the family of a San Francisco terminally ill cancer patient is suing the UC San Francisco Medical Center alleging that her physician and the system misrepresented that they would help the dying woman use California’s right-to-die law when her time came.

Instead, according to the July 7 civil lawsuit filed in San Francisco Superior Court, Judy Dale’s wish for a peaceful death through the state’s new aid-in-dying law was denied to her by the defendants’ “conscious choice to suppress and conceal’’ their decision that they would not participate in the law, despite her repeated requests to doctors and social workers throughout last summer that she intended to have a peaceful death via aid-in-dying. The suit also names the university’s Helen Diller Family Comprehensive Cancer Center, UCSF Health, a UCSF oncologist and the UC Board of Regents.

UCSF declined Monday to comment on the matter.

The 17-page lawsuit alleges that Dale “repeatedly requested” the reassurance of UCSF doctors and social workers that they would participate in the end of life law, “which they gave her over and over.’’ On Aug. 18, the suit says, Dale “was shocked to learn from her UCSF social worker’’ that her doctors had decided to deny any eligible patient who requested aid in dying, “notwithstanding their many prior representations that they would provide it.’’

After caring for the 78-year-old Dale as an inpatient throughout the summer of 2016, UCSF discharged Dale to her home to die without their assistance, the lawsuit says.

That set in motion “an urgent, panic-filled search for a physician who would be willing’’ to help her fulfill the process required by the End of Life Option Act, and obtain a prescription for the lethal medication in time to use it.

According to the lawsuit, Dale’s frenzied search occurred even though UCSF’s website says, “if you doctor does not feel comfortable using the act, your social worker will assist you in finding a doctor who has agreed to participate in the act.”

California’s legislation, which was enacted on June 9, 2016, requires that patients must be at least 18 years old and mentally competent to make health care decisions — and that the lethal medication be self-administered. Two physicians must confirm a prognosis of six months or less to live, and a written and two oral requests must be made at least 15 days apart.​

But by the end of August, when Dale made contact with a willing Berkeley-based doctor who agreed to work with her, the clock started running over again on the statutorily mandated 15 day waiting period, the suit says, and it was too late for Dale.

Every day until her death on Sept. 13, according to the lawsuit, Dale repeatedly asked her daughters if it was the day she could obtain the aid in dying medication, but the 15-day waiting period had not yet expired.

“Her daughters had to tell their mother that she could not yet have the medication which would enable her to achieve a peaceful death as she wished,’’ the lawsuit says.

Dale died one day shy of the 15th day, “precisely the way she did not want to die, in bed, in a diaper, bleeding from her rectum and urinary tract, too confused by pain medications needed to manage the excruciating pain of terminal colorectal cancer to say goodbye,’’ the lawsuit says.

Filed on behalf of Dale’s two adult daughters by plaintiff’s attorneys Kathryn Stebner and Deena Zacharin,

the lawsuit alleges elder abuse and neglect; negligent infliction of emotional distress; misrepresentation/fraud and negligence.

It also demands a jury trial and seeks unspecified general, special and punitive damages.

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