My Story:  OPIOID WITHDRAWALS – What to expect.

My Story: OPIOID WITHDRAWALS – What to expect.

By Judith Carr Bruno

Editor’s Note- Judie Bruno is a 68-year old Army vet and amputee who lives in California.

Judie Bruno and dog Fred

Judie Bruno and friend

I’m not a doctor or a medical person – and I’m not going to tell you what is going on with you as you stop a pain medication and are dealing with withdrawals, but only what I’ve experienced myself. So many American’s are having their pain medications refused and they will find themselves going through withdrawals in doing so.

In 1995 after amputating my right leg in order to get off of the high levels of narcotic medication the VA had me on, I took the steps to get off of it all. I was at the time taking 185 Mil of Slow Release Morphine a day, and two Percocet every 4 hours for “breakthrough pain” and sitting at home watching TV. Not the life I want, but after 12 surgeries on my right ankle it was so painful I couldn’t move it or use it in anyway. It needed to come off. My surgeon at the time asked me how I thought it would be best to stop using these medications and I suggested that he change the slow release morphine to instant release – 15 mil a pill and I started by cutting one 15 mil pill every Monday. By Wednesday through Friday I had flu-like symptoms. Not extreme, but bad enough where you just stay in your PJ’s all day long on the couch. I would then start feeling better by the weekend, only to start all over again the next Monday. After weeks of this, I finally was off of it and started the same process with the Percocet and cut down one pill every Monday to again have the flu-like symptoms.

Due to the VA’s policies on the use of Medial Marijuana (even in states like CA where it’s legal), they refused to give me one of the pain medications I was taking and forced me to stop the Zanax I had been on for over 9 years. From what I have heard, Xanax is not like an Opioid and is so much harder on you and your system to stop taking it.

In November, the VA told me they were cutting my normal prescription in half of what I had been on for years. I didn’t realize the effects this would have on me, and it pretty much ruined my Thanksgiving – and I was hosting the dinner that day. I learned my lesson on that one and made the decision when the VA told me they would only give me one more month at the half-dose, and then no more. I had almost another month’s worth of the double-dose, as I never abuse any drug and only take it when I need to – so I had enough to get me through Christmas even though I was still having withdrawals from cutting to the half-dose.

I had decided to go to a quarter-dose and did so for about a week when I realized I was going to be really sick. I might as well just stop it altogether, get it over with, and then go on with life – or so I thought. As a friend told me, “Oh that Benzo flu is the worst.” She also told me that it’s not like with opioids and you won’t get over it in a week. It takes months before you start feeling normal again – and boy was she right. Almost 12 days now, without any, and I refuse to even take a tiny bit to make me feel better – as I was also warned that doing so could cause a syndrome called “kindling” where each future withdrawal will be even worse. It’s sure no fun, and one day I will be doing a bit better only to be really sick the next. I’m told this could take months to get completely out of my system and for my GABA receptors to heal.

What new hell is this? The doctor at the VA who prescribed this medication for me years ago, never warned me about the side effects; but in truth, we all need to learn about any medication that is prescribed for us and what might happen down the years. Doctors should explain to us what pain medications can or will do to us and then allow the pain patient to make the decisions if the side effects are worth the benefits of taking such a drug. For years, the VA has just thrown pain med’s to Veterans instead of working on the underlying problems as it’s just easier to do, and then wonders why Veterans have become dependent on them. The VA never offered me anything to help with stopping this medication, but just told me I was no longer going to receive it.

Those who suffer from Chronic Pain are not drug addicts. If you have ever dealt with pain so bad that it affects your quality of life, every day, you will do anything to stop the pain. We all, as pain patients, must learn what each drug will do to us, how it will affect us over time, and then have the right to make the decision to either take it or not.

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Authored by: Judith Carr Bruno

There are 17 comments for this article
  1. Sandy Auriene Sullivan at 9:03 am

    Maryellen
    January 29, 2016 at 9:46 am
    has anyone tried Accupuncture for pain and depression?
    ——————————–

    That was the first thing I tried when I didn’t heal after the car accident. However, tried acupuncture for many thing previously without luck. Even had the electrode acupuncture needles in my spine – they are inserted like normal acupuncture but have wire attached and a machine that gives them a ‘tens unit’ like feeling. Felt better, less sore in those muscles for 2hrs. TWO HOURS RELIEF. *sigh*

    65-70$ gets me a 90m deep tissue massage that helps knots, side of thigh knotting [which is the cause of a lot of lower back pain] massage, neck, scalp [myofascial release] jaw, back of course, as well as feet. That actually eases pain or excessive ‘stress’ pain [not a panacea however, it eases everyday pain like knots on top of chronic pain] for up to a month but usually about 2 weeks. I just hurt less. Still have all encompassing ‘chronic’ pain though which I describe as the ‘white noise’ of pain. Acute pain is that ‘now now now’ pain which eases within hours.

  2. Sandy Auriene Sullivan at 8:23 am

    I did similar to come off the fentanyl patch. Which is a very strong synthetic opiate. Strangely, xanax was stopped with little to no problems. I do still get an even lower dose klonopin [my benzo intake has dropped over the years and I manage anxiety better. Not great – better]

    What nobody seems to tell people about stopping suddenly is SSRI’s like effexor or paxil. First withdrawal like symptoms I suffered were from Effexor nearly 20yrs ago. Today, a friend of mine still cannot come off of it after trying for years. The effect of lowering the dose for her today is so severe as to limit her function. She wouldn’t take an opiate for a broken bone because of dependency fears but there are far FAR worse things than an opiate or benzo to come off of.

    The medical community needs to be able to express this before putting a person on it. Effexors dependency causing properties were not known when I came off of it [6 weeks it took. It was horrific.] but they were known when my friend was given it. The real shame here is it took her a decade to get off of Paxil only to be put on another [failed] depression medication that does similar when stopping or in her case; just cutting them back to *stop* is an extremely difficult thing for her to do. I know.

    Then no one wants to talk about the elephant in the room. Opiate ‘flu’ kills. It kills just like the flu does. It kills in sudden and unexpected ways – when done improper – sudden stop of a high dose [ lets say 60mg 2 times a day oxycodone is ‘high’ enough to put your butt down for 3 weeks, then come back around after a week of being ok to kick your butt some more – approx 6 wks total]. We are at risk of dehydration, heart attack, stroke, flu like symptoms becoming an infection that goes into chest which can become pneumonia.
    They never want to talk about *those* lives and how anyone over the age of 40 [which is a lot of us] going through a sudden stop with opiates and how it can kill.

    They give all kinds of empty talk about the risks of opiates killing us but no one cares about a sudden stop in medicine burying us. Why?

  3. Brooke at 4:45 pm

    Judie,

    Thank you so much for warning everyone how difficult it is to withdraw from meds like benzos. I know hundreds of fellow “benzo buddies” who are into several months and years of coming off these crazy meds. I was on a very low dose of klonopin for a few years. I did not want to take it but a doctor said I needed to in order to get my vomiting under control and assured me it was benign and easy to come off. I was struggling with a rare pancreatic biliary disorder called Sphincter of Oddi Dysfunction and the low dose klonopin was a miracle drug for the nausea and vomiting. Unfortunately, these drugs are really only meant for occasional use or for less than 2 weeks. I learned the hard way benzos are a double edged sword. It caused me interdose withdrawal syndrome and in time some nasty side effects. After a few years I knew I needed to get off it. I took 10 months to taper and every step of the way was brutal. I made the mistake of going off then on again and got “kindled”. No one should cold turkey of benzos ever! Google the “Ashton Protocol” if anyone reading this wants to come off a benzo. That is the best way to taper. In the acute phase I experienced no less than 50 symptoms like dizziness, vertigo, headache, bowel issues, stomach pains including pancreatitis, muscle pain, fatigue/exhaustion, thirst, near seizures, eye strain, tinnitus, uncontrollable shaking and nerve pain to name a few. The acute phase lasted two months for me. All doctors I spoke with said it was impossible to have such symptoms for so long. How is it they are that clueless or in denial??? Now I am 4 months out and still have around a dozen of the original symptoms. Benzos are nothing like opioids. Opioid withdrawal is uncomfortable and can be brutal. Benzo withdrawal is an atomic bomb that lingers. I really hope this passes soon for you, Judie. Hang in there and keep staying off it. You are doing great–a true American hero!

    Anne–great letter. Please keep us posted if you hear anything. There has to be recourse for pain patients. How anyone can be completely dropped and left to suffer is beyond me. I’ve been there myself. It was an awful place. I pray you find someone. I don’t, however, have much faith in the medical profession, especially not the medical boards. These boards are part of the problem as well. They are citing doctors who prescribe opioids. I doubt they care.

  4. Mark Ibsen MD at 1:53 pm

    Please:
    No unsupervised, sudden, cruel withdrawals from medicines the we physicians have prescribed.
    None!
    No excuses.

  5. Anne Fuqua at 1:27 pm

    Dear Judie,

    I’m so sorry for all you have been put through. No one deserves that. Definitely not someone who has served our country. The following letter was also forwarded to state leaders and received no response, save information on drug rehabilitation from our governor a dermatologist. Right now my story has a happy ending. I travel cross country for care, for which I’m incredibly grateful. I can barely afford groceries but I have a life. I feel like a prisoner who received a last minute stay of execution while strapped to the gurney. I’m so thankful but terrified of losing meds again just like the prisoner who fears returning to the execution chamber.

    Thanks for all you do to advocate for patients Dr. Goodwin!

    August 28, 2015

    Dear Board Member of the Medical Association of the State of Alabama;

    I am requesting your assistance as a last resort for the severe difficulties I am having locating a physician to manage the medication I have taken for many years. These medications have allowed me to live independently and have a good quality of life. I’ve been a patient of a responsible and knowledgeable physician since February 2007, but he changed the scope of his practice this with very short notice and has not been able to help me find another physician to maintain my current, successful program.I have always been conflicted about using opioids due to the values instilled in me as a child. For example, after bilateral derotational osteotomies at age 13 that resulted in MRSA osteomyelitis and wound complications, I received only ibuprofen and a few doses of ketorolac. I’m not a person who simply cannot tolerate pain. I have Primary Generalized Dystonia of non-DYT1/DYT2 origin. Multiple blood relatives including my father have been diagnosed with Parkinson’s disease. I have tried many therapies over the past 15 years. An intrathecal baclofen pumpinserted at the age of 18 caused complications leading to an atonic bladder, chronic CSF leak, neuropathic pain, and actual spasticity, and plantar flexion. Medication trials have included: baclofen, tizanidine, dantrolene, trihexyphenidyl, benzotropine, levodopa, pramipexole, ropinirole, botulinum toxins A and B, and tetrabenzine via compassionate use protocol. Most were helpful to some degree during sustained trials on high doses. However, many had side effects that were intolerable, including elevated liver enzymes and orthostatic hypotension.

    After taking opioids for years, I was opioid-free by choice in the six months preceeding my appointment with my most recent physician. I was in the worst shape of my entire life – reliant on a power wheelchair, losing weight rapidly, with severe rigidity and intermittent episodes of myoclonus, unable to sit without support, with clenched fingers that rendered my hands useless. The comparison in my quality of life with and without opioids made one thing very clear. Although prescribed for pain, the opioids – by whatever mechanism – had a primary and significant effect on my dystonia.

    Within an hour of resuming OxyContin I experienced a noticeable improvement. Over the years, my dose has increased back to my prior levels. Each increase has produced sustained, visible improvement in my dystonia and quality of life without intolerable side effects. I understand my dosing regimen (high dose oxycodone and fentanyl) makes me an “outlier” in the scheme of medical board recommendations. I am no longer a prisoner in my own home. I started coaching youth sports for inner-city children from Woodlawn (which is adjacent to Crestwood where I reside). I began playing wheelchair soccer for Lakeshore Foundation. I traveled with teams that practiced twice weekly, with frequent road trips in a nine-month season. Getting to practice via the bus took most of the day. This was exhausting, but I absolutely loved it. Eventually, I was physically able to drive and saved the money to purchase an adapted minivan. This independence means the world to me – it is central to who I am and has made an incredible difference in my life. All of this would have been utterly impossible without medication.

    My undergraduate degree was in nursing and I was over halfway through a nurse practitioner program when medical issues forced me to leave school. I’m still young and have so much I want to do. I don’t want to end up in a nursing home because I cannot care for myself. I recently was presented with an employment opportunity that suited me and I was on top of the world. Then…I got the news that my physician was going to being changing his practice and no longer prescribing opioids. I would have to seek my own care elsewhere. The imminent reality of being forced to suddenly taper this medication and navigate the process of referrals to a new physician is overwhelming. Tapering has been devastating to my ability to function. I can no longer drive and have far more pain and difficulty with ordinary tasks.

    I’ve always had a great deal of respect for evidence based medicine and understanding the mechanism of how something works instead of simply knowing it is effective. However, throughout the history of medicine, the “why’s” have often remained elusive. I have been very fortunate to enjoy sustained efficacy of my opioid regimen for years, with results of not just moderate pain control, but a much more significant and meaningful improvement in my physical functioning.

    The physicians I’ve contacted (at least 15 so far) are good and compassionate primary care, PM&R, neurology or pain medicine specialists. However, they have cited the current regulatory climate as their reason for avoiding controlled substance prescriptions or keeping their dosing conservative. No one seems willing to take on my challenge and help me continue my quality of life and build my future because of the way my dosing regimen looks “on paper.” I have a documented good compliance history through PDMP and UDT monitoring. I have not engaged in aberrant medication behaviors. I have encountered no intolerable side effects, have normal endocrine labs, and remain alert and motivated. I have no concurrent mood disorders. I use other non-medicine ways to cope with the stress my body is under. I’m a positive and optimistic person that wants to do some good in my community. I do not want to be punished and put in this position simply because others have made poor choices regarding their controlled substances. I hope someone will be willing to “take a chance on me.”

    It is for these reasons that I am respectfully asking for your assistance locating a physician who can treat me (and my unique case) and allow me to have the quality of life and independence I have had for the past nine years. I am hoping your association’s advocacy efforts can extend to a patient in need. I am willing to travel and do whatever necessary to make my health care team comfortable that my regimen is medically necessary, safe, and that I am upholding my responsibilities as a patient. Thank you in advance for your consideration of my situation and any guidance you can provide.

    Sincerely,
    Anne Fuqua

  6. Kristine (Krissy) at 1:21 pm

    Judie, once again, thank you for your openness in telling the stories you have. I believe you have gone through much more than you may have had to since your VA docs don’t have any type of an elastic service! I wish you to feel better as soon as heavenly possible!

  7. DParker at 12:10 pm

    I’m taking ultra high dose opioids, I have 3 cyp450 enzyme defects that caused lack of absorption of medication. I’m a master students at the university. I hate being bound to the bed or couch. I work out at the gym a few times a week. I have adhesive Arachnoiditis that is advanced to the point that a sweat cold and hot all day. I cannot regulate my body temperature. I have bladder problems. Sever swelled in my legs. Sever intractable pain in my legs, back, arms and neck. I take medication and have a life. Please advocate for people like me and other who need pain medication to live. I’m a upstanding individual, I won’t compromise my morals and give even one pill away. EVER! Pain patients like me at not the problem

  8. Jaymie Reed at 12:10 pm

    It saddens me to read these stories, it saddens me that with our budget being so unbalanced that congress has decided to make the time to divert attentions from things they should be paying attention to such as reforming Obamacare. Imagine if all of The People were actually served by it. In a recent article noted that the number of opiod deaths from prescription medications was much lower and the heroin death toll sadly was much higher. Again, I ask why all of this attention to something that should be between a doctor and patient. So what is next, the legal community? Does congress begin telling lawyers who can file lawsuits, how much they can file for damages and when they can do it?
    I myself am no longer a patient. I have become a victim of a system run rampid thru fear and intimidation to doctors who either face the DEA or a patient. I have a Rare disease (CIDP, Chronic Inflammatory Demyelinating Polyneuropathy), this means that my own body has begun eating the covering off of the nerves in my peripheral nervous system. Imagine touching a hot electrical wire. I read in my groups every day about how people are being told they won’t be receiving pain medication any longer. Not because the need from the patient no longer exists but because the doctors don’t want to open themselves up to DEA scrutiny so they find it easier to no longer honor the oath they took “to protect and do not harm”. How any doctor can look at any patient with a documented disease where pain is actually an integral part of it, and does nothing help them with their pain, goes beyond anything that I can ever imagine in my mind. I myself just had this happen as I sat there trying to talk to my doctor about how I just wanted quality of life..I was ignored and as he scurried to school me on how I can only take pain medication from him and him alone became the focus of 80% of my appointment. I had a knee injury at a time when he was unable to be reached and my primary of 15 years prescribed something to add to my existing pain meds. The stories I could tell of other instances where I have been treated like the scum of the earth by his staff are extremely surreali. I stopped being a patient and became a pain pill. I have used my primary for pain control but he no longer will be doing it for chronic pain patients, so I was forced to go to a pain clinic or my own neurologist. Little did I know that he had seen this as a money making opportunity and brought in his own pain management doctor and from that point things began to drastically change. I don’t have any records of doctor shopping, always used the same pharmacy and much like many always followed the instruction on whatever I was given. But about 35% of the time I am in pain that keeps me in bed. I would love to be able to go to the store more than once every two weeks and at some point I would love to be able to go up and down the isles, instead of having to order online. I would someday like to be able to go to a movie. But now my goal is to try and have enough quality of life to walk my dog, to keep the little muscle I have left in my legs from atrophy as my next stop is a wheelchair. I also want to become an advocate and do something to give our doctors back the dignity that they went to school and deserve, to give our patients back the dignity and medical care they certainly deserve and most of all to keep our congressmen in congress doing jobs that involve political not medical concerns plaguing our country. Please stand up and speak out. People tend to sit back and complain waiting for the day to come when their doctor takes away their medication, but guys by that time…it’s wayyyy to late.

  9. Jodi Zwain at 10:05 am

    Aren’t there meds to counteract the withdrawl? When my son was trying to stop taking Dilaudid, the pain doctor gave him Visteril (not sure of the spelling). It’s like a really strong Benadryl. He slept for about three days, but was fine after that. Now he takes Norco 2-3 times a day as well as Lyrica. He is terrified of withdrawl and his body does react if he skips a dose of Norco. I feel as if we are in a tangled web. He has CRPS from scoliosis correction surgery and complications and now has difficulty walking because of it. This is a whole new world for us.

  10. Maryellen at 9:46 am

    has anyone tried Accupuncture for pain and depression?

  11. Dorian W at 9:24 am

    i have been taking 3, 80 mg oxycotin and 6, 15 mg morph. a day for 5 years now. In the 1st yr, i tried to control the medications myself. Like many, i would take 1 or two extras occasionally when the pain was so bad. Then came the end of month, I had to go in reverse. I would break them up and not have enough, causing extreme pain and the beginning of withdrawals. That was no hood. After a few months of that, i would give my wife my meds and she has doled them out to me since. When i am lucky enough to fill my prescriptions 1 or 2 days early, i am able to use those as extras, if nesessary. This system works great. If you dont have someone in your house that could do this for you and you find yourself running out early every month, ask your doctors nurse if she can hold yhem and you can pick up a 3 day or week supply. MOST Nurses are awesome AND THEY WILL HELP YOU. The problem for this author is the VA. I know i am on these meds for life. If they take away im done. Personally, i dont think about my medications all day. I do what i can when the pain allows me. being disable has messed me up financially at least my insurance coverage has improved and now cost 250 a month vs 1100. The health care program is great for people like me. If you a VET AND WANT TO BE ON PAIN MEDS AGAIN, JOIN THE HEALTHCARE PROGRAM, IF YOUR MONEY IS TIGHT LIKE ME THE COST IS CHEAP AND YOU GET THE MEDS YOU need. All vets should be protesting in waves right now
    I dont understand why they are allowing yhis pain medication reducrion to exist. the govt is pandering to addict and junkies while ignoring 100 million chronic pain patients. #patients not addicts

  12. Clare Rhodes at 9:08 am

    The only ones that will benefit from the new CDC guidelines will be the attorneys! There will be lawsuits from the pain community because this is SO unfair to do to us that suffer from chronic pain! We are not the ones abusing these meds, we benefit from them!
    My PTP got arrested for selling RXs of these meds and I went through absolutely horrible withdrawals, with NO help from Drs! No Suboxone, nothing! I even went to the ER, they told me to go home, that I wasn’t going to die! I sure felt like I was dieing. I know what that feels like because I almost did die from the effects of chemo when I was treated for breast cancer, so I do know what that feels like.
    Our country has a problem with opioids, but the problem is not in the pain community, it is instead in patients that have no need for these meds. STOP this ridiculous situation! And why did the CDC approve another crushable opioid???

  13. Jeremy Goodwin, MS, MD at 8:29 am

    Fear Judith,

    There is almost NEVER a reason to undergo withdrawal. Xanax is the hardest Valium like medicine to stop quickly but nothing compared to opioid withdrawals.

    Frankly, your care was abusive and misguided as well as totally unjustified. It sickens me to know that you had to go through this. It is what happens when politics, a pendulum swing brought about for highly dubious reasons with poorly and inaccurately procured ‘evidence’ calls the shots. The prejudice and lack of competence in most clinicians regarding pain msnagement coupled with unjustified medical board bullying constitutes a violation of the oath to ‘do no harm’ and it is fine with impunity.

    I am sorry that you experienced the ineptness of our new system ( pain management, NOT the Affordable Care Act). It is a disgrace. And I wish more doecislists with experience in academia would speak up.

    I have offered to be interviewed in depth but even this paper has declined. There is much bullying and self preservation of jobs involved and none of it protects the public. Medical boards now pursue us, fail to provide timely resolution of concerns, and they manipulate and act with impunity ruining careers by posting false accusations and conclusions to hearings where due process was not evenserved. It works. That is why so few now speak out. And for those of us willing, the editors and the papers become afraid of the consequences. It is a very sad state of affairs.

    I expect my reaction to your dreadful treatment will not be accepted as a comment!

    Jeremy Goodwin, MS, MD
    Past chief of the division of pain medicine in neurosurgery and seniour attending at the adult and pediatric neurology clinics, OHSU, Portland, Oregon.

    I wish you the best and can only help that I and others like me can help to turn this disgraceful situation around.

  14. Chris Jones at 8:28 am

    I was on pain meds for 10 years after 7 back fusions I knew the disadvantages of opiods but could not get any other help from doctors in the private field so this is not a VA only problem I eventually went cold turkey after telling the doctor that the new drug made me sleep 18 hrs a day and perhaps we should cut it in half and he replied “No i would like to see you on two a day before the end of next month” i now use many other forms of pain meditation from juice and herbs to meditation i have bad days and good like anyone but i am awake and alive ☺

  15. Kr at 7:40 am

    I am terrified of this and have only been taken down to 5 norco a day and have been suffering ever since they took me off the long acting pain med ms contin. I have also been trapped in wisconsinbwhich makes my pain worse uet no drs care here,ive been living like a hermit for 2 years unable to do anything. Amd im trying to move back to fl but am aftaid if i do the same bs will happen and i will be taken off my meds unable to find a dr or pharmacy who will fill them,thats one reason i moved from fl because of the bs happening w the pharmacies there.this state has the opposite problem their drs dont care here but pharmacies dont give any issues.

  16. Carrie at 6:32 am

    What new hell indeed. I’ve actually used the exact same expression.

    I used to be on 6 30 mg instant release morphine or 6 15 mg oxycodone a day. My doctor gave me the option of supplementing for breakthrough pain with a patch but I’ve never opted for that. I couldn’t stand the experience of running low (flu doesn’t seem to describe it well enough). So I slowly went down to 3 for 3 or 4 months and could barely function due to pain, not withdrawal. I told my doctor it was a failed experiment. But, I didn’t want to go back to 6 because when you run low, it’s horrific. It seemed like the flu only worse. I increased it to 4 and refuse to go higher but some days 4 is not enough so if I take an extra one, I will be low another day. The supply of pain meds seems to run my life. I know I need more most days but absolutely, positively do not want to go above 4.

    I get no “high” from pain meds and don’t like an altered state. I do not even drink – not so much as a glass of wine though my dr said that might help instead of increasing the meds – but I wouldn’t want to be on medical marijuana because I probably wouldn’t function on that. My solution has been trying to stay on 4 a day but it’s a struggle. I HATE the pain, I also hate the way pain meds seem to run my life. On the months I’ve run low, I have had the “flu like” symptoms but not as bad as it used to be. I tend to feel nauseous and crampy and I sneeze a lot (no idea what that is about). I also get restless leg syndrome which I had before I was ever on pain meds but it went away when I started pain meds (no idea what the connection is). But RLS comes back when I run low on meds. I hate all of it. I’ve thought of withdrawing from them but when I’ve tried to go to 3, it’s been rock/hard place time. I wish they would come up with something else. I have no idea what, but something. Something that doesn’t mean a fresh hell.