The Opioid Epidemic

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A lot of people have opinions about this subject, and it is one that I’m passionate about. I agree that opiates are bad, and people shouldn’t be started on them if at all possible. The government is waging a war against opiates and they are hard to get from any doctor now.

But there needs to be a second plan for those of us who have been on opiates for 35 years and need them to survive. Those of us whose bodies are completely reliant on them to function. Not everyone who takes opiates is an addict. I’ve never been an addict and I don’t consider myself one, even though I know I need the medication.

Addiction is in your mind. It’s when you can’t go without something. People can be addicted to anything. Diet coke, ice cream, nasal spray, Carmex… Anything you put into or on your body that changes the way you feel, can be addicting. Not always a chemical addiction, but an addiction nonetheless.

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Like many, I was started on opiates as a young teenager with ovarian cysts and migraines. My tolerance throughout the years has grown to something unbelievable sometimes, especially when nurses can’t understand why my pain can’t be touched. I take a medication daily for my chronic pain that is a partial agonist. It doesn’t take the pain away, but it keeps it tolerable and on a steady level. No ups or downs, I don’t “feel” any pain relief when I take it. And it blocks all other opiates, though it does have an opiate base. BUT, it’s a medication that’s also given to heroine addicts to cease their addiction, and every time I see a doctor or nurse that’s new to me, they always treat me in a manner that is judgemental, and can sometimes be called cruel.

For most people, the drug can be stopped three days before surgery and the opiates work. However, I have a problem. That doesn’t work for me. I have to wait MUCH longer to feel any pain relief.

During one procedure, I had stopped my medication two and a half weeks before the event (it was a discogram), and the sedation didn’t work at all. I asked the doctor if they were going to give me something for the pain, and he informed me that they’d done so about ten minutes ago. I felt the entire thing. The process of this procedure was to put four needles in my neck, one in each disc.

[Discogram X-ray with four needles in my neck]

I had to remain awake because they would pump liquid into each disc to see if it stayed in the nucleus, or flowed out, meaning the disc was broken. My job was to tell them when I couldn’t stand the pain anymore. They went in through the front of my neck and had to repeat the fourth needle several times as it kept getting caught on my collarbone. They were finally in and we discovered that three of the four discs were broken.

The doctor kept telling me to hold on, and that he would have the nurses take care of me when we were done. I waited in the recovery room behind a fabric curtain with my husband and we heard two nurses meet outside my room, and one said to the other, “She’s a Subutex patient–don’t give her ANYTHING.”

[Injection site]

I was livid. Even if I WAS an addict, they have high tolerances for pain medication, but they do feel pain, and they have just as much right to pain relief as anyone else. And it will take MORE medication for them, not less. Nurses cannot make a judgement call like that when they don’t know the story. But now it’s that way with all opiates.

But what are the people like me supposed to do? Just get over it? That’s not in the cards for me. I am scheduled to have my fourth spinal fusion with decompression laminectomy on April 23rd. In order to get pain relief from the medication at the hospital, I must stop my current medication and go through withdrawal, as well as deal with ALL my pain, for 21 days, until it’s completely out of my system. Why 21 days? That is how long it takes for me.

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The doctors believe that the shelf life of the medication should have it out of my system in four days. I found an article, however, that states not only can a person be tested positive after eight days of no medication, but when it is metabolized in the liver it make metabolites that remain in the body. It is my belief that as long as those metabolites remain, I am blocked from all other opiates. I have tried to stop the medication a few days before, I’ve tried to stop it two and half weeks, and the last time it took twenty-one days to feel any pain relief from another opiate. In the ER, I was given four shots of fentanyl, but felt no relief.

What’s my pain? Mostly in my back. I’ve had my ovaries removed and the migraines have been fine. But I inherited some issues from my sweet dad that keep me in a chronic state of pain. I have the spine of a 70 year old in a 46 year old body. There is spinal stenosis from my neck to tail, as well as degenerative disc disease, two herniated discs currently, I have lumbar osteoarthritis, kyphoscoliosis (which means the spine curves incorrectly from side to side, but also front to back), my neck curves the wrong direction (reverse cervical lordosis), I have a spinal stimulator, and I’m fused from L2/L3/L4/L5 and next month I can add L5/S1. The levels that really need the surgery are at the top of the fusion (T11/T12/L1), but they are dangerous to do as it is lung and cord level. But the discs have degenerated so much in the last year that both levels are pressing against the thecal sac (which is the sleeve that holds your spinal cord). I will likely need that surgery soon. Probably next year. Then I will will be fused from the bottom up to T10. That doesn’t make me happy.

[My spine from the front]

I am not imagining my pain. It is real and it is horrible. One of the nurses told me during my last surgery, when the morphine pump didn’t work at all that I’ve screwed my body. “If you were in here for a car accident, we wouldn’t be able to help you at all,” she said.

I replied, “I’m here now and you can’t help me at all.”

I deal with more pain on a daily basis than some people feel in their whole life. My family gets caretaker fatigue.

“What’s wrong?” they ask.

“Nothing,” I say.

“Oh, are you in pain?”

“Always. I’m sorry.”

“No don’t apologize. You just have ‘pain face’ and I was just concerned.”

“Okay.”

*Two hours later*

“Hey, you okay?”

“Yep.”

“What’s wrong?”

“I’m just hurting.”

“Again?” they ask.

“Still.”

And I feel so lame being the one who hurts all the time. I can’t do anything. I can’t work an outside job. But I haven’t worked enough in my lifetime to receive any benefits, they tell me. I edit to keep my mind off my pain. And now that I have to stop my medication before the surgery and get it out of my system, I asked my doctor to prescribe (again) a bottle of percocet for the pain from the time my meds are gone until the surgery. But because of the opioid epidemic, no one wants to give them to me. My GP refused and sent me to a special doctor, and he won’t give me any either. He told me to go back to the GP and ask again. The surgeon hasn’t answered my calls and only gives out Tramadol, which to a person like me, works about as well as baby aspirin. I wouldn’t even fill it. No, I probably would because it would be all I could have.

[My spine from the side]

People stare at me and some make comments because I have a handicapped placard and no wheelchair. But they don’t see how much effort it takes me to walk. They don’t see the spinal stimulator implanted in my hip that’s wired to the pain center of my brain. I charge it every few days, and after nine or ten years, they’ll have to cut out the battery and replace it.

A lot of people ask about the spinal stimulator. It is NOT pain relief. It is meant to be a distraction from the pain. When it’s on it feels like the pins and needles that you feel when your foot falls asleep, or like a TENS machine, if you’ve ever felt one. It tingles like that from about my ribcage down. EVERYWHERE. It takes some getting used to. It feels like wearing electrified panyhose. The idea is this: you know when you break your arm or cut yourself, all you can think is, “Ow, my arm. Ow, my arm.” Then someone activates your electrified pantyhose and you’re like, “Oh my arm. Whoo! My tingles. Ow, my arm, whoo, my tingles…”

In theory, your brain can’t fully focus on two pains at the same time. So you still feel all your pain, you just ALSO feel this prickling all over that should take some of the brain power away from feeling so much of the pain. It doesn’t really work. I mean, if you broke your arm and I kicked you in the shin, they would both still hurt. But when I forget to charge the battery through my skin, it sometimes turns off and I don’t realize it. Then, when I turn it back on, I feel a split second of pain relief and it feels so good to have the tingles back because I’ve gotten so used to it. But that’s about it for pain control.

[the curvature of my spine before the fusions, next to the expected curve]

At this point, I use whatever I can to make the pain tolerable. Unfortunately, sometimes I need opiates. I’m not an addict, there is no reason why I shouldn’t have them at this point, but because of the epidemic, I am out of luck. It will be very hard for me to keep up with the blog throughout April/May, but I will do my best. I know everyone is wanting to see how the books do, so I will try, but please forgive me if the posts are shorter.

I have had some luck with the AMS ads and I’m still learning. So I will tell you all about that next week, and give you the update on our WIP. I got it back from my editor on Friday and I’m dying to look, but I haven’t had the time. It’s making me so excited. I have chosen some great agents that I targeted well and I can’t wait to do the final edits and send it out.

Please support me in my fight by realizing this epidemic isn’t a black and white issue. It needs to have two parts: not starting people on opioids, and taking care of the people who are already taking and need them. I live in Kansas and we don’t even have legal medicinal marijuana to fall back on. We are sandwiched between Colorado, Oklahoma, and Missouri–all legal. If you are going to take our opiates, at least give us alternative pain relief.

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Sign your Kansas petitions for legalization. Here’s a link: https://sign.moveon.org/petitions/legalize-the-use-of-marijuan

Unfortunately, Kansas doesn’t work the same way with petitions as Missouri and Oklahoma, but if we show Governor Kelly that there’s a need, maybe she will acquiesce.

All of you have a great week and I will see you next weekend with book news galore. Thanks for letting me rant and include my two cents. And if you have a cause you are passionate about, let us know in the comments and give us a link to support you.

Keep Writing!

~jenn

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