Not It!

Not It!

Editor’s note—It’s great to have Liza back writing with us, she’s so honest.

December 2oth, 2019 I was scheduled for removal of my fallopian tube for hydrosalpinx and an oophorectomy (ovary removal), due to ovarian cysts. I’d had my right fallopian tube removed in roughly, 2000, as well as my uterus. The birth of my youngest, who was born prematurely, as was her two older sisters, had put a lot of strain on by body. It still kind of felt like things were being removed piece-meal, but I was glad to have the surgery as I’d spent the last three months in a great deal of pain. Had I been able to I would have done it sooner, but being close to the end of the year, I wasn’t the only one with this idea. But this shouldn’t be a problem. Your surgery shouldn’t end up being like a booked-up flight and you shouldn’t be treated like you’re just another passenger. Because you’re not; you’re important and unique and this is your body.

Liza Zoelick

I must begin by saying I’ve saying I’ve had many surgeries in my life. Enough where I can distinguish the good, the bad and the ugly. This surgery went off without a hitch. It was everything that came afterwards that left us scratching our heads. It began with pain management. Not surprising, but not in the way you might be thinking. There was a valid reason (as far as I know). The meds they were giving me were opiates which are central nervous system depressants that can lower blood pressure. This can also make the person drowsy, while irritating the opioid receptors which block pain and suppress the cardiovascular system. [1]Causes of Low Blood Pressure with Opiates But, and it’s a very big but, the medicine they chose to send me home with (which I only found out after picking it up at the pharmacy), was the same medication I have been taking for almost five years now. This understandably left me extremely upset and as soon as I was able to, I was on the phone calling my doctor- the one who performed the surgery, to find out if there’d been an error. Mind you, this was already Saturday morning, so I had to speak to the answering service which put me in touch with the on-call doctor. By-the-way, this taught me an important lesson: on call doctors cannot call in opioids because those must be written on triplicate. I don’t know if this is just a Texas thing because I’m not well versed in opioid laws from state-to-state, but I was told my appointment would have to wait until Monday and I would have to show up to the office and wait to be seen. I did this and it was the following part which ended up being the convoluted part, as I will explain.

My ob-gyn sees me, checks my incisions and asks me about the pain- which she explains to me that she can’t do anything about it. I must call my pain management doctor and speak to him to change the medication because she can’t prescribe anything stronger than the hydrocodone that she already prescribed. It seems strange to me, but she is the surgeon, and if she said that is how it is why would I argue? I leave the doctor’s office and while I am in the car driving home, I am calling the pain management doctor. This is all feeling very repetitious by now. Same old story told repeatedly. There aren’t any appointments, so I am on stand-by in case there is a cancellation and that evening I called. There is a cancellation for 9:45 on Christmas Eve and I am there, hoping to be heard, hoping that my pain will end.

Confusion abounds over responsibility of my medicinal needs. It feels that much of it could have been cleared up without me as the mediator, calling and going to see one doctor and then the other, being able to feel the frustration grow. I feel I am in the middle of a game of “Not it” where my doctors are running around trying not to get tagged, with me hopelessly hobbling around with my cane chasing them. It feels like the chronic patient has been forgotten in this vortex of opioid hysteria, where the legalities have become more important than treating a patient’s pain. I could have gone home with stronger medicine for a few days that would have solved everything, instead of medication that I have been taking steady for 4 ½ years 3x a day, and that my body is accustomed to. Taking them after surgery was very nearly like swallowing some M&M four days straight. Think about that for a moment. Is that fair? Is that moral? Is that right? Is causing the suffering of a patient right? I don’t think so. Yet, I never got angry. I never raised my voice. Never blamed anyone. All I wanted was someone to help me. Like most pain patients. To be heard.

This is something I think we are going to have to reconcile as a country and as a profession, very soon. That line, which was never crossed before, which I now see being used as a jumping rope: the good of the patient. What does that inherently mean? How keep true to it without crossing that line? Has anyone said explicitly what that line is? Is it just creating a drug addict in a person who would not otherwise be one if it weren’t for pain medication? Is there a way to predict that without hurting the millions of pain patients out there who don’t abuse their medicine? We’ve been staring at this crossroads for a long time now, but I do believe we’re at the brink of a dangerous tipping point. Patients who do not receive the medicine they need to quell their pain will begin to seek alternatives- and those could be dangerous alternative- and then what have you truly prevented?

  • [1] Wood-Moen, R. (2017). Healthfully. [online] Healthfully. Available at: https://healthfully.com/135531-causes-low-blood-pressure-with-opiates.html [Accessed 3 Jan. 2020].

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Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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Linda

That was cruel Liza. Downright cruel. I am incredibly sorry for what you endured. GODSPEED
Linda

I had two pre op appts. for different teams last July for a nephrectomy in August. We went over my care as a chronic pain patient in detail, for the time I would be in the hospital, right down to the type of mattress! I felt a hundred percent ready to go for my big day and for my recovery. I was ready to get on with this gift of life and to be cancer free God willing.

Nothing discussed was implemented or taken in to consideration. I’ve never experienced pain like that in my life. And I’m a 59 and have chronic pain! To this very day, I still wish I would have died in surgery, or never had it and died from my cancer here at home.
This is true. It was more than anybody should ever have to bare.

Cindy

The emotional and physical pain never ends!! I had a knee replacement 3 weeks ago and the insurance seems to think that there should be no further need for opioids. Because I picked up my chronic pain med last week which is a much lower dose, insurance won’t let me get it until the pharmacy lets the surgeon know that I have the lower dose at home. You know how hard it is to get the pain med from the pain dr. so I do not want to take that as it hardly helps the chronic pain!! So insurance companies rule over it all!! I couldn’t even pay for it out of my pocket. After more days of hassles, who knows if I will ever get it. So infuriating. Yet it all gets worse with no end in sight. And We suffer away and really no one cares.

Holly

Unbelievable but now a days very believable! I, like many others will not have any surgery unless I get a signed paper stating what kind of pain meds I will recieve while healing. Here you are, post opt running around to different appointments to get pain relief! I am so sorry! I hope you are healing nicely. Thank you for your story.

Correction not red

You know how they have colored ribbons for different types of cancer. We need to do not ribbons put some type item like a shoes that are certain color that represents chronic pain persons? Any ideas out there? Black lives matter had scarves. LBGTQ has the rainbow. Wasn’t there bracelets for chronic pain? I think we should have the color red in something.

forgot: when I spoke to the FDA, I also asked why does the FDA still let injections into the spine call ESI or epidural injections into the spine. She says the FDA has never allowed steroids to be injected into the spine. I said but doctors have been doing it off label. She said yes off label they can. Her statements contradicting. Europe & Canada stopped using steroids being injected into the spine BC of arachronist, why hasn’t U.S followed suit. She says we wrk w/ other countries but we make our own decisions, we just don’t follow what everyone else is doing. I am w/ Cecilia on holding off on surgeries. I was supposed to have my other hip labrum repaired & bone spurs removed from shoulder. Now that I’m suffering a nerve injury w/o pain meds just ice packs hoping that it will not be a chronic issue. fear that it’s going to be BC have to wait so long to get into therapy again . I had surgery to feel better not to cause worse pain & then be ignored by the surgeon. Treated as if I have the plague. We are at a time where we’re desperately needing guidance from our leaders but none is to be found. They sold us out in exchange for places of honor & privilege, money. They do not care if we suffer unjustly nor will they respond to our frustration & hopelessness. We beg for legal protection against the racism of having chronic pain. In history they will have to stand & give account for what they have done to their own citizens suffer unjust treatment. The shoes the people that committed suicide need to start being piled up like they did for the people that were killed in the Nazi camps. Though we are not in camps yet , are we not on a database list? Some people sent to rehab clinics when they’re not addicts? How long will it be before we are tattooed with numbers BC we are not dyeing soon enough?

Cecilia Sexton

Your story illustrates exactly why I refuse to undergo a Total Shoulder Replacement. Without my even enquiring about post surgical pain meds, he informed me of what the maximum type & dosage he prescribed, which is less than what I’ve been taking for several years. I suffer from Arachnoiditis and other spine problems. He obviously is not factoring in each patient’s condition and history. He’s prescribing what he feels comfortable with under the Opiod Hysteria. I don’t believe this attitude is compliant with the Hippocratic Oath he swore to…”To first do no harm”

Dana Wirth

I am surprised that you are not aware that the boat has tipped over long ago, maybe because this is your first personal experience I have been in the line of fire for years now as soon as my Pain Management doctor started cutting my meds according to the guidelines of the CDC which were only for Primary docs and their opiate naive patients. I have been suffering chronic pain from cancer surgery and other treatment since 2003 and have been prescribed opioids from fentanyl to morphine to Percocet with no adverse effect. I have no addiction problem although I am dependent. I am in too much pain to function without without this medication along with nerve and muscle relaxers. Not only the cancer pain but osteoarthritis, degenerative disc disease with nerve impingement from Thorasic to sacral spine have joined the party. Not to be left out, recently my hands have started going bad with constant pain,, cramping and spasms. Enough of that 😼
First visit to newPrimary this past week, what a shock. I upgraded my insurance policy so I could get 20 co-pay free acupuncture treatments and my glasses, great stuff, and picked an internist as my primary. His bio said he did among other things , treat arthritis, evaluate and treat back pain, and do pain management. I thought I hit the jackpot but what a load of crap 😾 He will not write prescriptions for any type of pain medications and all I got was referrals to other doctors. I pointed out to him how he misrepresented himself , didn’t make him too happy but do I care?. He has since change his bio.
Now regarding the referral to the Pain Management doc. My morphine and hydrocodone run out in 8 days now and I still don’t have an appointment. My medical records must first be scrutinized by the doctor and staff before I can be approved for an appointment. WTF 🙀 I am 8 days away from the start of cold turkey withdrawal and does anyone care??????????????????
No, so I start my countdown wondering what happens.

First I want to agree with & thank you all Liza & vintage lady, Linda cheek. Back in 2012 I had neck surgery w/a cadaver bone Fusion put in. I went thru Hoops just as Liza described. Right after surgery very next day I had to go to PM turn in my script which I made a copy of & had them sign it to make sure I didn’t get blamed for not turning any. I’m not the only one going to be held responsible. Now the same thing is happening w/ the recall of Ranitidine. I finally called the FDA spoke w/ steve. I also brought up the opiate issue & was describing how I just recently had surgery ended up w/ a nerve injury. now I’m already a chronic pain person I have to go w/o any medication & use ice packs. Steve he hung up on me. The 2nd person at the FDA was a woman very nice ,she said she had just as many doctors calling in complaining about people using opiates as there are pain patients calling. She said there is a meeting January 14th through the 16th online & you can advocate for yourself the website is called anesthetics & analgesics Drug products on the FDA. Gov website. Well I brought up FDA gov website said it’s not available. But then brought up FDA and there’s several website so it would be a hunt. She also ask what website do I use to advocate. I brought up NPR & pain Alliance. she said she doesn’t recognize the last one I mentioned. Curious as to why she knew what websites people were advocating on for opiate use. I have no doubt we are being spied on by the opposition. It’s a complex problem BC the DEA FDA CDC there too many departments that do not really communicate well. It’s always someone else’s problem to handle if you call in. Like Liza said not it tag game.

Dooney

How fun that must have been post surgery trying to get pain situation straightened out. That would have stressed me out so much I’d have even worse pain. Something similar happened to me. My discharging doctor wrote me a prescription for extra morphine for a thoracotomy I had (which hurts like hell). The pharmacy wouldn’t fill the medication. I didnt ask any questions as I figured it was the same old BS. I later found out that I could have received that medication if only my pharmacist would have spoken to the discharging doctor, with her knowing I also receive medication from her my pain doc office and it was ok. Of course my FPC doctor knows I get meds! One night I tried to roll over in bed and screamed so loudly the sound to my ears was as bad as the pain. Next time I have a surgery I will be sure to get all the postop med info in place, what I get, who will prescribe etc.
That is if I get any post OP meds !

Cindy too

According to CDC’s own data, fewer than 1% of post-surgery patients given opioids develop addiction problems. Clearly, this is not worth causing the extreme suffering to the more than 99% of us.

Also, pain itself can cause death.

See below link, for an article from the Practical Pain Management website, titled : “Sudden, Unexpected Death in Chronic Pain Patients”

https://www.practicalpainmanagement.com/sudden-unexpected-death-chronic-pain-patients

Here is part of that article –

“Unexpected, sudden death due to severe pain is poorly appreciated, since many observers still view severe pain as a harmless nuisance rather than a potential physiologic calamity. In many cases, just prior to death, the patient informs their family that they feel more ill than usual and seek relief in their bed or on their couch. Unfortunately, some of these patients don’t awaken. Other patients die, without warning, in their sleep or are found collapsed on the floor. Modern medicine’s aggressive toxicology and forensic procedures after death have contributed to the poor understanding of pain’s death threat. In some cases, a pain patient that was being treated appropriately with an opioid or other agent with overdose or abuse potential has suddenly and unexpectedly died. Drugs were found in body fluids after death, and in my opinion a coroner wrongly declared the death to be an “accidental overdose” or “toxic reaction” to drugs rather than implicate the real culprit, which may have been an “out-of-control” pain flare.”

Thomas Wayne Kidd

Thank you for your article. I feel for you very much. Think evil was conjured up without our rights, our safety or our health. Money and profits to line the pockets of the greedy evil people behind this. Our Presidential could stop or at least slow down the suffering of innocent people suffering already! These things are spoken of in a Book called the Bible, but millions have basically rejected it. I have searched it for most of my life and continue to do so. You are in my prayers Ms. Zoellick.

LMC

In reference to the last sentence:
TRUER WORDS HAVE NEVER BEEN SPOKEN (OR WRITTEN)!!!!

Vintage Lady HD

It’s all a travesty that has lumped Recreational Drug Addicts and Legitimate, albeit Dependent Prescription Drug Patients… the difference being ADDICTED AND DEPENDENT. ADDICTS use the drugs to get high, feel good, abusing their right to use opiates. DEPENDANT PATIENTS use prescribed medication to alleviate legitimate pain, having had tests, x-rays, MRI’s, etc, with their doctor knowing you as a patient who Needs the medication to alleviate legitimate pain.
Funny how it was the Pain Management Centers who by giving out these pain meds to just anyone who walked in off the street whatever they asked for
.. if they had the cash… are now the same Pain Management Centers who are in charge of the Legitimate Pain Patients and are DENYING medication unless the patient jumps thru the same years of treatment with their Primary Care Physician, only on hours into pain management, to now have to BEG TO BE ABLE TO PROVE WE REALLY NEED THEM! And if you are on Medicaid… Good Luck… and if you live on a RURAL area… GOOD LUCK!
THESE INTRUSIONS INTO OUR RIGHT TO THE PURSUIT OF HAPPINESS AND OUR RIGHTS AS TRADITIONAL, LEGITIMATE PAIN PATIENTS REALLY NEED TO BE ALLOWED TO GO BACK TO OUR OWN DOCTORS TO BE PRESCRIBED OUR PAIN MEDS FROM THEM WITHOUT FEAR OF REPRISAL FOR FULFILLING THEIR DUTY AS OUR OWN PRESCRIBER OF OPIATE AND OTHER MEDICATIONS AS THEY USED TO…
‘PLEASE JUST STOP PEEING ON OUR LEGS AND TELLING US IT’S RAINING”!!!

Yes, Liza, the answer is available. People, chronic pain patients, etc, just don’t learn it. It is easy to determine which people are more prone to addiction and which aren’t. It is through the science of homeopathy. And the REAL cause of addiction is explained on my video by that name on http://www.doctorsofcourage.org. But as long as people don’t learn and teach this amazing truth, the worse things will get. Doctors are now being taught that opioids cause addiction. Soon there won’t even be opioids available and more doctors will go to prison for treating pain patients. So if you want things to change, join us on our Communication Campaign and our webinar every Monday night. The instructions for this week are on the Communication Campaign page of DoC. Getting H. Res 747 passed is a great step in the right direction. What we have to do is “Do Away With the CSA.”

Linda Olds

A similar thing happened to me in 2008, even before the ‘opioid crisis’. I had recently had knee replacement surgery, and I was having back pain in addition. My primary ‘care’ physician gave me a few Tylenol#3 one time. He told my orthopedic surgeon that I was a possible drug addict, so they wouldn’t give me pain meds even though I was still in pain from the surgery. He sent me to a rheumatologist (I didn’t have rheumatoid arthritis), who gave me Tramadol (didn’t work), then Darvocet, which worked a tiny bit, and which he thought was safe but was later taken off the market. The primary ‘care’ doc had an MRI done on my back, said nothing was wrong. After I insisted, he sent me to a back specialist, who looked at the same MRI and said that I had arthritis in my back and shouldn’t be working. He looked at me with pity, gave me effective pain meds, recommended pain management docs, and called my primary ‘care’ doc and yelled at him.