Getting off opiates: My experience

There’s been a lot in the news lately about the opioid epidemic. People are dying, and for the first time the face of drug addiction is becoming people who look just like us. People who are older. People who are responsible. Mothers. Fathers. Grandmothers. People you wouldn’t expect.

I recently got into a heated debate with people on Facebook — it’s something I try to avoid at all costs, but when it’s about something this personal to me, and the comments are so vicious, and it’s a friend who posted it … well, it was hard to not engage. The gist of their point was that drug addiction is a choice, and this new opioid epidemic is just a bunch of lazy people looking for a government handout.

As someone who was addicted to opiates, this bothered me.

So I want to share my story. It isn’t that particularly painful, and it has a happy ending, but I came close enough to the other side to be able to see it, and understand it, and be very glad that I never crossed over that line.

In 2015 I was at a conference in Chicago where I slipped on ice at my hotel, fell down, landed on my shoulder, and experienced searing pain. It was so bad that I nearly passed out in the ambulance on the way to the emergency room. After some agonizing repositioning for xrays at Northwestern University medical center, they saw that the humerus was fractured. Essentially, the little ball part of your upper arm that fits into your shoulder blade was smashed.

They gave me norco, and since I didn’t live in Chicago, they put me in a sling and a cab and sent me back to the hotel where I packed up with one arm, and flew home, in a haze of pain and drugs.

I followed up with a specialist at home in California, and two days later I was in surgery for an open reduction internal fixation, or ORIF for short. The doctor was going to put pins in my arm to hold the bone back in place. The surgery went wrong when the final pin shattered my shoulder even worse. Like if you hammer a nail into a piece of wood the wrong way and it fragments. That’s what happened to my arm. A simple 90 minute outpatient surgery turned into 8 hours and a hospital stay.

They tried to solve the problem of my bone fragmenting by doing soft tissue muscle repair — in short, they would bring the muscles around and hold the bones in place. It meant that I was in an immobilizer for about 3 months, and after 6 weeks of healing I would take off the immobilizer for several hours each day to sit in a continuous passive motion chair. That was a chair that had a rotating arm. I’d sit in it, the arm would move mine up and down, and it was designed to stretch the arm and get it ready for PT. PT started 8 weeks into healing, 3 times a week, where I would use pulleys and weights to stretch it out. I had a home pulley system as well.

All the time, I was taking up to 8 norco a day.

Here’s something you should know about me. I don’t like drugs. I didn’t have an epidural when I gave birth. I rarely take ibuprofen for headaches. I’m not a “drug person.” Since having a child I do drink coffee. And a bout of post partum depression led to antidepressants. But those are the only substances I put in my body (besides sugar, which is a whole different discussion). I never did drugs as a teenager, and the four times I experimented with pot I hated it because I didn’t like being in a fog. Also, it made me paranoid and hypochondriacal.

So I’m not the kind of person who likes being high. I don’t enjoy the experience of being out of it. I like to be present to my life and what’s happening. I don’t like the feeling of things slipping away without me knowing about it.

During the initial healing period, I was at the doctor every week for follow ups. Each time he would ask me whether I needed more pain medicine. I always said yes, because one thing I am is a hoarder. And I can be excused for it, given the first experience we had trying to get my norco initially.

When I left the hospital with my scripts for Percocet and norco, my mother in law (who had been with me at the hospital while my husband was at home watching our then 18 month old daughter) took me home. Hubby made sure I was settled in, and then went out to gather the medicine, scripts in one hand, daughter in the other (so that I could rest).

They went to no fewer than 15 pharmacies in the Riverside/San Bernardino area, and were told that there was a massive shortage because of the opiate epidemic. I couldn’t get norco post surgery. I had had a stash left over from another surgery I’d had before, so I dug into that, and we continued the quest. It took about 2 weeks before we could actually fulfill the scripts that I had been given, at a Target pharmacy.

So when the doctor asked me every two weeks if I wanted another prescription, I said yes. Who knew whether there’d be another shortage. What if I needed another surgery, and there was no norco again then? It seemed like a good idea to stock up while I could. At one point, I had close to 350 10–325 norco pills in my medicine cabinet. I took them along with 800mg ibuprofen pills every few hours.

Here’s why I took them:

1. I had an 18 month old daughter who was active and needed my attention. I still couldn’t really use my arm properly, which made things like diaper changes difficult, but I did need to try to be with her as much as possible. I would sit on the side of the tub while she bathed, and I’d carry her in one arm to put her in the crib. I cooked food with my right arm in the immobilizer, getting into strange yoga positions so I could cut vegetables, or take the caps off jars and bottles. I’d hold her, standing up, between my legs to do one-armed diaper changes. I couldn’t have done this without the norco.
2. I needed sleep. I was sleeping sitting up, with my arm still in the immobilizer, propped up on pillows. I would wake up to the muscles jerking, and my arm shaking. Anyone who has had an 18 month old child knows that you need your sleep. You also need it when your body is trying to heal. I had a double whammy, and the norco allowed me to get some stretches of good sleep so that I could be functional during the day.
3. I needed it for PT. PT was grueling. My doctor told me it would be, and I should just take a norco before going. So I did.

Four months after my initial fracture, I was headed to get a CT scan (the kind where they inject dye, which is one of the most painful memories of my life). I was feeling okay. I was still in a sling, but I was progressing with PT, and I was busy packing up our house for our big move to Spain that month. We were getting ready to complete my case with my arm, and things were moving ahead. It was time to put this chapter behind me.

Then the CT scan showed zero healing of my arm. None. Nada.

No wonder PT was so terrible for me. The soft tissue muscle repair hadn’t done its job, and the bone was still in its original state. The doctor wanted me to get a replacement immediately. I had a renter showing up at our house the following Saturday to move in. I literally had nowhere to stay in California if I was going to have the surgery.

So we decided hubby would go to Spain, and daughter and I would stay with my parents on the east coast while I sorted things out with the arm. I flew solo with all our stuff, and got set up with a new doctor. Thankfully, he was more conservative when it came to surgery and replacements, and he wanted to wait on it, as long as I wasn’t in “debilitating pain.” He gave me a script for even more norco.

I moved to Spain to join hubby, drugs in hand, and got settled in to our new life. Three months later I went back to the doctor on the east coast, and he saw that there still wasn’t much healing, but given that I wasn’t in terrible pain, he wanted to keep waiting on it.

The reason I wasn’t in terrible pain was because of the norco. I just want to make that clear.

So I head back to Spain, and continue on. Eventually I realized that I was going to have to get off the norco. I started weaning off it.

That’s where the fun started. (As if all this hadn’t already been fun enough)

Here’s what happened as I started weaning off the norco:

The worst part for me was the lack of sleep. I would wake up at night with nightmares and terrors. My heart was racing. I was drenched in sweat. My legs were shaking. My arm was shaking. I was completely exhausted, but could not go back to sleep. So I would soak in a bath, trying to relax, to no avail. I couldn’t concentrate on anything. Even reading a magazine in the tub was too much work for my exhausted brain.

Throughout the day I was irritable, mostly because of the lack of sleep, and I couldn’t concentrate on anything. I would forget what was going on, and I was not able to properly care for my daughter.

Also, I became aware of the pain my arm was still in. I looked into non-medicinal pain management, including my TENS machine, massage, and acupuncture, but these things all take time. Again, I had a 2 year old. If I had been on my own, without my husband or a strong support network, there is no way I could have fought through this period.

The worst part of the symptoms lasted for about 10 days. It doesn’t sound long, and even as it was going on, I kept telling myself that I was closer to being okay again. After about 2 weeks I was starting to feel normal again, only with a lot more pain in my shoulder than I had experienced before.

My story ends abruptly and happily. Two and a half years later, I still haven’t had the shoulder replacement, and my arm is healing. My doctor is amazed at the fact that new bone is still forming, and the muscles are stronger; and while I still can’t move my arm above my chest on its own, I manage to get by. I’m becoming ambidextrous. I exercise it doing a funny modified swim stroke which may look more like a doggy paddle, but it works for me. It’s still in pain often, but I manage it through massage and the TENS, as well as exercise.

But I know that the only reason I was able to stop taking the norco was the support network I had, and the fact that I don’t like being on drugs. If I was someone who enjoyed the feeling of being high, who liked that dazed feeling even a bit, there’s no way I could have pushed through it. I made myself endure those 2 weeks because I hated being addicted to something. I hated being drowsy. I hated being not all there. If there was any teeny tiny part of me that enjoyed that, there would have been no point in pushing through it.

If I wouldn’t have had a husband who could take on total care of our daughter while I was a zombie, I couldn’t have done it. Someone needed to be present for her. If it wouldn’t have been him, I would have had to stay on the norco until I could have found a place for her to go for 2 weeks while I detoxed through it.

Also, if I didn’t have a high tolerance for pain, I couldn’t have done it. My shoulder hurts, still. A lot. Going off the meds made me realize how much. Because I don’t like being on medicine, I searched out alternatives for pain management. But that was me, taking the initiative on my own.

All of these things require a person wanting to get of the meds. You have to go through work to get off these drugs. You have to find alternatives for pain management. You have to find someone to help you manage your life while you detox. You have to want to get off them.

I was lucky in that I’m the type of person who really didn’t want to be on medicine, and I was able to come back from full on addiction. But if I had been leaning even slightly more towards the side of not wanting to go through what it took to get off them, I don’t think I could have.

Also, just a final note. At no point while visiting my doctor, when he asked if I needed more pain pills, did he advise about addiction. I did receive a pamphlet from my work comp adjuster (because I had been at a work conference it was a work comp case) about the opiate epidemic, and how to wean off the drugs, but other than a quick, “I want to make sure you know you can’t take these forever,” comment as he was writing out yet another prescription, my doctor didn’t say anything. He’d ask how many I was taking, write it down, and that was it.

I’m sharing all of this because I want people to have an understanding of how easy it is to slide into addiction, even if you’re not someone who wants to be on any kind of drug, and how difficult it is to get back out. It’s my hope that as more people share their stories, we can all have some meaningful impact in creating solutions that really provide the tools people need to get off the drugs.

Maybe that means accessible childcare for parents. Maybe it means having someone come help you manage your life as you detox. I’m sure it means doctors being proactive in helping people not become addicted in the first place, and providing pain management solutions that don’t involve drugs.

Whatever it is, more than anything I want everyone to be aware that many of those who are addicted to opiates are normal, likely well adjusted people who are dealing with chronic pain, and are just trying to manage that.