Chronic Pain Community Finds a New Warrior

Chronic Pain Community Finds a New Warrior

By Ed Coghlan.

When the National Pain Report ran a story on the Pain Advocacy Coalition it elicited immediate and positive response from our readership.

The Pain Advocacy Coalition is an online chronic pain community that is using digital tools to lobby Congress and their state Governors on what it perceives to be the unfairness of the CDC Guideline on Opioid Prescribing on pain patients.

One member of the Coalition is an example of the part of the chronic pain community that thinks they’ve been unfairly targeted.

Nicole Burrows

Nicole Burrows, a 54-year old woman who lives in Florida, spoke with the National Pain Report this week.

She suffers from four herniated discs, arthritis in hips and fibromyalgia and spends “half my day on a heating pad”.

She used to use opioids to manage her pain, but her rheumatologist stopped prescribing in 2011. She tried injections which not only caused a bad physical reaction but didn’t manage her pain.

She can’t help her husband with their home service business anymore and admitted that she sometimes gets very emotional and frustrated and suffers from depression.

She’s been using Kratom for the last year which helps and she’s irritated—very irritated—that federal officials are now targeting Kratom the way they have opioids.

Nicole has taken to Twitter to fight on behalf of Kratom and found the Pain Advocacy Coalition which she joined late last year.

“Finding other people like me gives me hope,” she said.

There’s power in numbers, she believes, and “each of us can do something”.

Ken Adams is a partner in the Pain Advocacy Coalition.

“There can be no more talking about us without us,” he said. “We want to be part of the conversation and where appropriate make sure we are part of it. Bottom line is we want a seat at the table.”

For Nicole, who has a daughter and three granddaughters that are the lights of her life, her fight can continue because she’s found people she can fight with.

“That’s a good and hopeful thing,” she said.

If you join on Twitter, make sure to use the hashtag #shareourpain to help find Nicole and others who are battling on this important issue.

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Authored by: Ed Coghlan

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24 Comments on "Chronic Pain Community Finds a New Warrior"

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i have severe uncurable life long chronic pain,have had since 2003 had four major operation’s,2 neck fusion to try to stop,lower pain,had every treatment know to pain doctors,with very little or no effectiveness,since this opioid criss’s started had my doctor ordered rx opioid medicine lowered in medication type,mg’s,amounts,i’ll go ahead and say it in 2015 my pain doctor was gaven me 3-30mg’s of oxycontin aday which after being in such severe chronic pain since 2003 took away 1/2 of the great pain i felt like a new human being not high but able to do thing’s i couldn’t since 2003,now they have been lowing it to 1omg’s of loratab 3 times aday,my doctor can’t even control my blood pressure with medicine i can’t move if i move too much the pain get so great i pass out,i’m dieing from not be able to move,eat right,sleep right,i can’t even live life as an disabled person,i wrote the president getting ready to do it again as soon as i can before i die,going to stop to lay down just doing this has made my pain very great,please pray for me i don’t want to die in this much pain,can’t even make my peace with the lord pain so great it kepts from thinking right,thank you.

Hi, everyone! Thank you for supporting Nicole and all pain patients who are utilizing all means possible to contact their policy makers, oversight agencies including FDA/ CDC/ HHS, third party administrators, special interests and others w/ a stake in implementing more restrictive policies or even outright prohibition of opiods for the treatment of acute/ chronic/intractable pain. We believe by effectively utilizing collaborative tools to amplify a unified message collectively aimed at all regulatory agencies we can all make a difference. We can successfully crowd source a common problem that binds us together and communicate the negative impact the CDC Guidelines have had on our community.. Thanks for everyone’s support and feedback, and a special thanks to Ed Coghlan and the National Pain Report. You can learn more about Nicole’s evolution into a empowered patient and pain advocate at Pain Advocacy Coalition’s post “eAdvocacy Jouney: Nicole’s Leap of Faith” https://painadvocacycoalition.com/testimonial/2164/

What the people in government need to realize is that life happens to all of us. It doesn’t discriminate. Anyone can have an accident or illness that will cause them chronic pain, just like us, so they should think very hard before they help make these unreasonable guidelines, because you reap what you sow, and They will soon need the same pain medications one day.

its my understanding that the DEA is one of 12,000 employees with a budget of billions… I’ve read countless testimonials of chronic pain patients who’s stories of being shamed by Drs pushed aside by rude ER staff , who these patients obviously know what’s what with their body’s how they work what’s to come anxiety over the terrible treatment recieved. Maybe it would be benifical for those of us who have been pinked by Drs whose arrogance compounds our pain, to start a list. For instance a site that would describe the ” details ” of these demeaning thoughtless compassion lacking physicians and their minion . So maybe in the hopefully not to distant future documentation will show who was worth their salt when pain patients had to bite the bullet .
I’d have no problem naming the jerk off wads who have been condesinding rude thoughtless then rebill me after being paid in full a yr ago two yrs ago just to be a thorn in my ass.. I think a Drs name site and description of their abuse to us is absolutely necessary.

I had spinal issues abou 23 years ears ago. I went through years of sufrgery,heal time, pain managemen, and was almost bankrupt from income loss. The pain managment specialist then, one of only two for about 14 years was “big” inot intrathecal pumps. I researched the option and found at the time about 70 percent of the actual implants were reversed, not successful. So, I stayed with prescribed medications. For the last 6 years swith the second pain managemen specialist, a spine pain management specialist. I have been “stable” on medication. Employed, NO increase in dosage, one medication only. I hardly ever needed break through medication, I just toughed it our a day or so as spinal pain CAN and DOES vary from time to time. Then at he beginning of 017 I was rediculuosly decrease 80 percent in medicztion. Sounds like a great deal of medication but, it took 23 years to get to the point that I could manage my lifetime pain management issues very well with NO harm or disruption in bodily functions.By the way, even though my pain management doctor did “service” intrathecal pumps fpr pain management, he was not “pro” intrathecal pumps. That being said, there are many different pain management issues that the pump, will not effectively manage lifetime pain. I, personally will not consider the pump even if I am a “good” candidate.As Dr. Ibsen commented, “patient medical feedom”. Choice is neccessary!

It seems that Mrs. Burrows has found herself in the web of deceit formed by HHS, CDC, and DEA. Bondi can be “thanked”, in Fla, for the ineffective management of lifetime pain management there.IF kratom helps manage pain for patients, helps enables us do the very neccessary items in life that means self providing, self sufficiency without patient “harm”, then exactly what…..is dot/govs problem? Kratom is targeted exactly like opioid medication and I agree with her, The patients, we the people with disabling continuous pain need “a seat at the table”! It is not just a few thousand people, patients in the country that have been so badly affected with the CDC “policy”, the guidline for opioid prescribing medications. Since reduced myself, 80 percent per day in opioid medication that has enabled me for some 23 years to remain self sufficient, employed, socially active in my family needs, I am understanding that literally millions of patients are very badly affected with CDC policy to the point that we can NOT remain self providing any longer. So badly affected with “policy” that as the last resort patients are FORCED to either break “law” in the attempt to manage our pain by seeking possibly illegal substances for most states, possibly using alcohol in the attempt to have adequate pain relief or the last scenario, end the pain permanently. The last choice, forced by “policy” is simply unacceptable, unnecessary, and inhumane treatment caused by “policy” that would force a treatable patient to do the unacceptable. Almost one year ago, a native in my state, county, did everything he could think of to be accepted as a patient with incurable, lifetime pain. He went to extremes not hurting anyone but, literally begging for adequate pain management in some form. He refused to use illicit or illegal substances and could not find effecrive pain management. He did the unacceptable just before the beginning of 2017. A few days after Christmas, 2016. His narrative is heartbreaking and of course not one published story of his demise came out in print. It is like the family of someone forced to stop the pain is somewhat ashamed of what has occurred, and the narrative or reasoning behind his decision was somehow, distorted.. The true narrative of his plight for pain management and his ultimate demise IS the fault of all agencies, individuals, and “pro” CDC “policy guidelines. Call it patient abandonment, willful negligence of healthcare, or a simple dismissal of a person, a documented lifetime patient with pain management care…….that did not have his healthcare needs met. ALL because of a unilateral “policy” that is NOT meeting basic healthcare needs for pain management,.Mrs Burrows is right in her logical thinking.. The patients AND our physicians involved in a new “policy” for opioid medicarion prescribing are NOT being heard. A seat at the table I would think is morally, legally, and humanely neccessary. WE realize that lives have been shortened with overdose of drugs but, how often are the… Read more »

Congratulations on finding your voice, Terry.

What even your state legislators may not know, is that the CDC issued a Guideline because it’s not legal for them to issue a Regulation.

Regulating opioids is the FDA’s job. Not the CDC’s.

A pressure group called PROP actually devised the Guidelines and when FDA refused to create the regulations PROP wanted, PROP lobbied the CDC and got it to issue the Guidelines.

PROP has an undisclosed conflict of interest. It’s executive director is a Board Director of a medical malpractice insurance company, that wants the Senate to pass a law capping pain-and-suffering damages at $200k, when doctors harm their patients. This wrongfully enriches bad doctors by keeping them in practice. The only way the insurance company can get the Senate to go along with their idea, is to convince most Americans that pain and suffering aren’t serious problems, and that a damage cap that protects bad doctors, won’t harm any patients.

The reality is that many bad doctors became uninsurable because they repeatedly were sued for harming patients, so the bad doctors opened pill mills that did nothing but prescribe drugs for people who wanted the drugs. As attacks on pain patients mounted, good doctors who were afraid of being targeted, would send their pain patients to the bad doctors to have opioids prescribed for them.

That’s what made today’s problem so complicated. The bad doctors were supplying necessary drugs to patients with real pain, and also were maintaining addicts. PROP had no clear concept of how many pain patients and how few addicts there really were, so they ignorantly lobbied to force changes upon everyone, without realizing how much harm the changes would actually do.

Pain patients have done nothing wrong. We do not deserve to be tortured for having pain. We need to speak up, and speak out, or pressure groups like PROP will keep winning.

After having time to think about this, I hope everyone is looking at this issue broadly enough. From a principle perspective, this issue is about so much more than kratom. The question folks really need to be asking is, “In the United States, where we uniquely have inalienable, individual, inherent rights, how does any level of government believe they have the privilege to legislate what we can, or can’t, put in, or take out, of our own bodies which are our own sovereign nations?” While it is a little flattering they want to protect us, the bottom line is it is outside any government’s jurisdiction. Before We can thoroughly educate the FDA/DEA/Trump, We ourselves must understand the roots of this tyranny. The government has always known it doesn’t have the privilege to make plants illegal. They tried with the 18th amendment, but they quickly learned the 2nd amendment trumped the 18th amendment. After passing the 21st amendment in 1933, less than a year later, in knowing they did not have the privilege to make machine guns illegal, they simply perverted the 16th amendment, and passed legislation stating in order to possess a machine gun, you first needed a tax stamp from Congress, which they printed few of. This Jedi mind trickery was only possible because the People were docile after the 21st amendment. This single act set the stage for the tyranny We see today from the FDA. As in 1937, the government passed the Marihuana Tax Act, stating in order to possess marijuana, you first needed a tax stamp from Congress, where they simply didn’t print any stamps. This is the basis for how our government originally overstepped its bounds. We have to fight the tyranny at the root. We the People would never stand for that outright tyranny in 2017. Could you imagine? Sure you can exercise your 5th amendment, but first you need to possess a 5th amendment tax stamp, and sorry we aren’t printing any. Technically, via precedent, our government feels they have that privilege. Unfortunately, since the original shenanigans were in the 1930s, everyone just feels it’s always been like this, and that the government can do whatever they would like. Our government needs taught otherwise, and We the People must accept our responsibilities. Fear is the only motivator for a tyrannical government. If they’re not looking over their shoulders, then we’re not doing it right. Scared, not smug, they must be, in order for We the People to win this war of our generation. This war is more crucial than Vietnam, Iraq, Afghanistan, Syria, or North Korea. This war is on our own soil. Right in front of our eyes. In war, it is kosher for both sides to fight. What war has ever been won by a People who sit back and cross their fingers the attackers will just not be evil? Where only one side takes up arms against the other? We could try putting flowers down the barrels that will certainly… Read more »

I loved your blog and you mentioned something very important. Letting our legislators know that there are real people with real pain out there, we’re not all a bunch of drug addicts. We have to stop being afraid of angering our pain management doctors when they threaten to reduce our meds. I’ve hear that from mine as well as “it;s a new Michigan state law, my hands are tied”. So I investigated the amendments to our laws regarding opiates. Here’s what I found. In the last 100 years there has been one amendment passed regarding the prescription and usage of opiates for pain and here it is. It only applies to new patients who have had for example a wisdom tooth removed, knee cartilage surgery, a bad sprain etc. The law states that no more than one week of opiates are to be prescribed for new patients with acute pain, that’s it! As far as chronic pain patients all there is, is some very vague CDC guidelines, not laws, also, chronic pain patients are still allowed enough pain medication to treat their condition as long as there are supporting documents in your file by the doc, also, the doctor has to check EVERY pain patient using the MAPP system (mobilizing for action through planning and partnerships), every month before prescribing anything. So make sure that you have documentation from every doctor that you see to put in your folder, if you don’t do it nobody else is going to. We have to stand up for our rights and fight for a chance for a normal life. Keep commenting in the blog world, people ARE paying attention. I commented on a blog about having my dose decreased because of my doctor’s paranoia. A freelance journalist took note of my comment which also included one of my many problems called CRPS (complex regional pain syndrome). He contacted me and we spoke three times on the phone, and now he is writing an article about me in the AARP magazine, The Bulletin. I have also written to my congressmen and senators and I’ve received five responses so far. They only acknowledged my issue with compassion but of course took no action, but you know what, now the word is getting out. So educate yourself about laws from your own state(s) and get out there and defend yourself, fight for what’s right! I for one am not going to let some doctor build up my tolerance to opiates and then start lowering my dose(s)! These are decisions that potentially will ruin our lives!!! My average pain level went from a four (which I found to be quite tolerable), to a six, which affected me greatly and limited what I was able to do (physically)! I don’t have all the answers, we just have to keep hammering these guys (gals) to save our lives. Get off the couch and get out there and advocate for yourself!!!

Jeremy Goodwin, MS, MD

Cheri Furr
You are absolutely right. I am so sorry. Terrible.

I would also like to become an advocate for intractable pain patients to continue to be allowed opioids to be prescribed by their doctors. I was diagnosed with Complex Regional Pain Syndrome (CRPS) in 2000. It affects my ilioinguinal nerve on my right side. It goes from my right hip bone down through the canal where your hip joins your leg, part of my groin, inner thigh, calf, and foot. My leg is so weak that I haven’t been able to drive since then. I can’t stand up long enough to cook, have balance and memory issues and profuse sweating. It is most painful when I sit up straight. I have to recline the seat almost to the max when I ride in the car. It takes me two hours to shower, wash my hair, dry it and get dressed, with no make-up. The only thing that dulled my pain without a roller coaster effect was fentanyl patches, using oxycodone as well when fentanyl alone was not enough. That mostly happened if I had to be out at a long day of tests and several doctors appointments in one day, holidays, a funeral or a wedding. Most of the time my days have to be spent lying on the bed of a recliner. After many years, though, the constipating effects made me have to stop wearing fentanyl patches. I turned again to oxycodone from my doctor. After going to the same neurologist and using the same pharmacy for 17 years, my neurologist told me at my last visit she would no longer be doing pain management, but only treating patients with MS or migraines. Where does this leave me? I have been a model patient over 17 years. I used prescriptions according to directions, never shared them and never went to a different doctor or pharmacy. I do not steal out of anyone’s medicine cabinet or buy illegal drugs. I have NEVER felt high when using my prescription drugs. They just dulled the pain to a minimum. My state just passed a new law stating that a doctor can only prescribe five days of opioids. You can get refills, but what good does that do me? I would have to have someone take me to the doctor’s office to pick up the prescription in writing, then physically take it to my pharmacy and wait fot it to be filled. They cannot be faxed or called in. There are no pharmacies who deliver here. Remember, I can’t drive, and I am in way to much pain to try to go through all this every five days. I can’t afford to take a cab or Uber to two different places and back home every five days on disability. To make matters worse, my husband just died December 17th. So what am I supposed to do? Commit suicide or buy illegal drugs from a dealer who could deliver them to me??? The government should not dictate the terms of prescribing pain relief to… Read more »

I did not realize that they were still after Kratom again.
Kratom is no different than any other natural product herbal remedy on the drug store shelf.
Sennosides is a good example. Once used as a horse laxative during the Civil War. Post war saw its use in syrups and granulations for humans. It was marketed by the Chattanooga Medicine Company. Wine of Cardui (also made by Chattanooga medicine company) was an alcohol elixir (20% alcohol). The leaves in this plant was used by the Cherokee Indians to reduce menstrual cramps.
This formula was tested on the uterus removed from a live rabbit.
The Syrup of Black Draught was tested employees that were $15 per dose and the results reported the following day. The Granulation formula was tested on mice and the dropping collected and weight the following morning.
Later, a chemical assay was developed and the sennocides were extracted and diluted to a small volume using 0.5M NaOH forming a pink solution, The absorbance of the solution was read on a spectrophotometer and the active ingredients calculated. This product is still the #1 recommended laxative today.
http://americanhistory.si.edu/collections/search/object/nmah_716499

Jeremy Goodwin, MS, MD

Nicole, I keep coming across patients on these sites who would be excellent candidates for an intrathecal pain pump trial that can be achieved with a simple injection without need of implantation of the Insurance-covered device and refills. It can be implanted andcexpkanted without changing your anatomy and it works so well in spinal pain that may not be treatable with Dx / Tx injections. The surgeri id Minot and same day and the amount of opioids is 80-300x less than via the oral route. If it brings down your spinal pain via use of either morphine, Dilaudid or fentanyl with or without bupivacaine, clonidine, etc., then you can go 1-6 months without need of a refill depending on the size of the reservoir, concentration and rate ofvtye medication that goes straight to your central nervous system without the systemic side effects. I have found that by controlling intractable spinal pain this way, more systemic, widespread pain such as fibromyalgia is decreased simply because one pain can trigger another. By decreasing spinal pain, walking and other exercises become far more easily done. That cannon turn help with fibromyalgia. The batteries can last 8 years and all sorts of adjustments can be made. Please ask your pain specialist about it or for a referral to one with much experience in handling pumps.

I hate when I read language like the following: “She can’t help her husband with their home service business anymore and admitted that she sometimes gets very emotional and frustrated and suffers from depression.” She ADMITTED? What is there to admit? Nicole didn’t murder anyone! There is nothing to ADMIT. She has not committed a crime. She’s in PAIN and it impacts her life in many difficult ways, and, so, like many of us, she has an emotional response to this. Were she NOT to feel frustrated and depressed by her pain and how it has changed her life, she would not be human, she’d be a robot! This is one of my biggest pet peeves relating to the whole chronic pain, pain meds, and the entire controversy surrounding this topic in the popular press and among people who don’t know what they’re talking about. I HATE how those of us who suffer from chronic pain (through no fault of our own…) are expected to keep it as a dirty secret, something that we need to feel ashamed about. If a five year old were to (God forbid!) suffer from severe pain due to an illness or injury, no one would ever use this kind of language. That child would not be expected to feel ashamed or “admit” to feeling frustrated or sad. Our hearts would open wide and we’d want to embrace that child and comfort them. As well we should. So, why is an adult who is suffering and feeling frustrated and sad because life as they have known it has changed drastically. Dreams have been crushed. Our (hard fought to receive) pain medications often fail to help more than take the edge off of our severe pain. And, yet, due to the current atmosphere surrounding pain, pain meds and chronic illness… the message that we are hearing loud and clear — that to suffer from pain and all of the ways in which it negatively impacts our lives — we are somehow responsible for our suffering. We should feel embarrassed to have become ill or injured, as if it’s the same thing as being weak or that we’ve somehow caused it to happen, and so we meet, secretly, in online groups, too afraid to share with our “other” Facebook friends and, even, our real life friends and families, as if perhaps it’s contagious. Many of us have had friends and family abandon us! Doubt us. So, naturally, after years of that — we can’t help but feel guilty. We have become sort of brain washed and believe that we need to admit to what we’ve been led to believe are our failings. It’s cruel and unusual. Please, Nicole, do not ever feel that you must ADMIT to feeling frustrated and sad. We are warriors. Most of the people in our lives could never last days, let alone for YEARS… living in pain, doctors being skeptical about their symptoms, pharmacists second guessing their doctors, feeling the stigma of… Read more »

Sometimes I think the CDC won’t be happy until every chronic pain patient has some type of pain control device implanted in them. This entire campaign of theirs is based on manipulated statistics, outright lies, and abuse of legitimate, responsible patients.

If Kratom is such a great idea I sure would like to see the national pain review its use and recommended or not one way or the other . thank you

I tried Kratom and it did not do anything for me, there is excellent information on this herb in a forum called, “I love Kratom”. Just google this. A lot of people say it helps them.

A major source of Kratom-related harm is the Body-Building community. Some weightlifting enthusiasts abuse Kratom to numb severe pain, out of a mistaken belief that “pain brings gain”. Curiously, this is a novel application of the same idiotic idea that’s been doing harm to pain patients recently. Pain patients keep getting falsely accused of “opioid hyperalgesia”, a theorized condition in which the medicine supposedly makes us hurt more, and stopping the medicine makes all our pain go away. The weight lifters simply carry this theory to an extreme, assuming that if they keep re-injuring themselves, the re-injury will make them stronger. Of course, the reality of forcing yourself to keep doing something that hurts, is that you will do further damage to your body, making yourself weaker instead of stronger. If he were still alive, we could ask police sergeant Matthew Dana, of the Tupper Lake police force in upstate New York. According to press accounts, Sgt Dana was a bodybuilder who used Kratom heavily during his workouts. ( http://www.newyorkupstate.com/adirondacks/2017/09/upstate_ny_police_sergeant_died_of_overdose_on_legal_but_controversial_drug_krat.html ). Where the storyline gets a little weird, is that the medical examiner characterized his death as an “overdose”. That was a little too simplistic. Sgt Davis drowned in a bunch of his own blood, after rupturing a blood vessel in his lungs, apparently while lifting a weight that was really too heavy for him to lift safely. Kratom leaves contain traces of Ajmalacine, a substance that increases blood circulation and slows clotting. Kratom principally contains Mitraginine, a substance that binds the µ-opioid receptors but not the kappa-opioid receptors. The µ-receptors primarily affect pain awareness, but it’s the kappa receptors that cause sleep. Bodybuilders like this effect, because they want to numb the pain a bit before a workout, but don’t want to get drowsy and feel like taking a nap. So the actual issue that caused this “kratom-related” death, was the idiotic theory that forcing yourself to suffer more pain, will make you stronger. The deceased officer apparently had some chest pain when he lifted weights, so he took Kratom before working out, and kept forcing himself to feel more pain. The pain did finally stop…right about the time he lost consciousness from blood loss and died. Can Mitragynine be medically useful? Probably. It might be very useful in a nasal spray that one could take for breakthrough pain, as it wouldn’t make one drowsy. Or possibly it could be given in a time-release form, that one takes at breakfast to control pain through the day…one could switch to a full-agonist opioid at night, when the sleep-inducing effect is most useful. But what killed Sgt Dana is the same dumb theory that’s ruining the lives of pain patients and has driven too many of us to our deaths recently: The dumb theory that feeling pain makes us stronger, is simply false. Sgt Dana followed that dumb theory and pushed right through the pain until it killed him. He could have used any drug for that purpose, or no drug… Read more »

Let’s not forget that old Jeff Sessions is trying to delegalize marijuana in the States that legalized it. Truly feels like a witchhunt. Delightful, though I don’t use it myself.

Nicole thank you for stepping out of the shadows and joining the movement. Together we CAN make difference

Wondering if would be possible to establish a national database of responsible M.D.’s,
that would accept patient’s with conditions similar to Ms. Burrows for opioid Rx, or if any such type of organization or services already exist.Unfortunately, her situation seems to be all too prevalent.Hope they leave Kratom alone.

After reading the headline to this story I was expecting to see Kellyanne Conway! (sarcasm) What has she been up to since being appointed the Trump Administration’s Opioid Czar in late November? How did she get this appointment with no experience in public health, addiction or drug policy?

“It is a positive sign, she is a high profile figure in the administration, showing the administration takes this seriously,” opioid policy expert Andrew Kolodny of Brandeis University told BuzzFeed News.

Hmmmmm. . .

Medical freedom!
Thanks Nicole

I’m with you! I also have been taking Kratom for pain management and I am very angry it’s being targeted. It’s crazy what is happening now. I’m sure Big Pharma is in this up to their ears.