oxycontin

Lisa Curtin -My Mom Was Addicted

In the late 1990s, Lisa Curtin's mother read about a new drug called Oxycontin, and then nothing was ever the same for Lisa or her family.

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All through our years of growing up, my brother and myself, my mother struggled with alcohol before she got addicted to drugs.

My earliest memory is when I was about 6 years old, and my brother who’s eighteen months younger than me, was four and a half, you know, she was on a bender, just drinking like crazy, my father was traveling. She told my brother and I to pack our clothes. We were going to have to live in an orphanage because my brother and I were fighting with one another and she couldn’t handle it.

She literally made us go pack our clothes. A stranger came to the house to pick us up. She put us in a car with the stranger and the stranger took us to a grocery store parking lot. And in the grocery store parking lot, he just turned to us and said, “You know, you just have to start listening to your mom. She’s just sort of at her wits’ end, and if you don’t listen to your mom then you know, you’re not going to be able to live there anymore.” He brought us back to our house then.

And I don’t for one minute doubt that my mother loved myself and my brother. I don’t doubt that at all. But I realize that you can’t compete against a bottle of vodka. You cannot compete against whisky. And you can’t compete against prescription drugs. It just doesn’t happen.

When she was around 50, she diagnosed herself and convinced a couple of doctors at the time that she had fibromyalgia. This was her ticket to freedom. Very difficult to diagnose. She was smart enough to figure out ways to pretend that different pain points in her body when touched would be sensitive to that touch, and she then started to get prescription drugs.

It started with Vicodin, at first. Because sometimes she would not eat, physical things would actually happen, like she would actually trip.

One time she, you know, broke a toe on her foot. My mother, my daughter, Amber, and I were going on a trip together on a plane ride. She was on a crutch and her toe was casted and we get to Alabama, and my mother forgot her medication at home.

So, when we were in the hotel room, she unwrapped her toe, reinjured it which then caused us to spend a good portion of the time in the emergency room so that she could have another x-ray on her foot and get pain medication. Now she’s got you know, a supply at home and now she’s got a supply while we were on vacation so when she gets home she has a great party ahead of her because she’s got all this medicine.

The things that she did, the way she sort of manipulated situations to be able to get what she needed to get is no different that someone who is on a corner, you know, looking for a way to be able to get a quick fix.

All through my mother’s fifties, she struggled with some sort of illness, one way or another, that was causing her to get prescription medication. And then my father had his stroke. So the year would have late ‘96. My mother met a doctor – and I’m getting chills just thinking about it right now – who turned her on to Oxycontin and that’s when it really just started to go down.

At first, it seemed to be like good for her, in that she didn’t seem to be in pain and she had a better frame of mind, and she was gentler toward my dad and more sympathetic toward my father’s situation. But after awhile, she would just track when she would take her pills, and I have 3x5 cards of her handwriting of how she was like monitoring when she was taking the prescription medication, because I think she was trying to convince herself that she wasn’t actually taking more than she should. But she was. And it was an endless supply.

This also started a trend where she would overdose on a fairly regular basis. At least five times which usually was she took too much of her Oxycontin, she didn’t eat. Once in awhile she would mix it with alcohol. She’d go to the emergency room. I’d get a call and I’d get there, and I’d say to the doctor, or the emergency room physician, you know, “Test her blood alcohol count or test her for, you know, morphine or whatever. Just test her for something because I’m sure that she’s overdosed. It’s not that she just fell or that she’s disoriented.” And she would deny it, you know, she was always in denial about this. Constantly in denial.

Sure enough, you know, the next day they’d come back with test results and her blood alcohol count was really high or the presence of opioids in her system was really high. But still the doctor continued to prescribe them to her.

There was a time when my mother overdosed. I walk into the emergency room. I could hear my mother’s voice asking for morphine, that she was in pain, I want this, I want this, I want this drip. And they ended up giving her the drip. But then I went back to her apartment. I found thirty–seven prescription bottles of medication from four different doctors. Most of them had like one or two pills in them. But all either for Vicodin or Oxycontin.

And I brought all that medication to the hospital. And when I saw her doctor, I showed him. =I go, “This is what you’re dealing with. =She’s going between Illinois and Wisconsin. She’s going across the state borders to get medication.” And the doctor who I think was the worst influence in her life, you know, he just seemed to ignore it. He didn’t think it was like that big of a deal.

All I think about from the time I was 6 years old and I’m 58 years old now, that’s a long time, that’s 52 years of trying to figure out how the hell to take care of a woman who doesn’t know how to take care of herself, or anyone else, and refuses to get help.

The memory of all this stuff that went on with her still lives with me every single day. Every single day.

My mother passed away in 2006. It was actually my grandsons’ second birthday. I had gone to the doctor with her two weeks prior. And I told the doctor once again that my mother’s best day of her month is when she comes to see you, to get her prescription refilled. The doctor said to me, “Well, you know, your mom’s in pain. And she – you know, I don’t think this is an addiction. You know, this isn’t a drug that’s addicting.”

And I said, “She doesn’t even eat. She’s either falling in the bathroom or she’s falling, you know, in the living room or whatever. When they take her to the hospital you end up coming there, and she gets what she needs. So she’s figured out a way to get a fix until she can get the next prescription filled. This is a pattern and you’re not helping at all. I’m like powerless to do anything about it.”

The doctor still filled her prescription. And the twins’ second birthday was coming up. nd so she was going to come with us, and I was really excited that week because I thought, Ok, that would be great. You know, she’s going to come. This is going to be wonderful for her. And she called and said that she wasn’t able to make it. She wasn’t feeling very well.

I just had this weird feeling all day long. I tried calling her several times. I couldn’t reach her. She did end up calling me back, and she said, "I just want to lay around anyways, I don’t feel good." And I said, "Well, okay, we’ll talk on Monday."

So Monday came and Monday night came, and I still -- I hadn’t heard from her and I kept calling her. Finally, I called the apartment building that she was living in and I asked them to do a ‘check well-being’ on her.

She was gone. She was gone.

And I’m like Okay. I was at work and it didn’t really even sink in, you know. In a way it was sort of like, She’s gone so it’s like relief. But I know that sounds terrible.

But on the other hand it was like Oh my God, my mom’s gone and I never could fix her. I could never get her to understand herself. I couldn’t even get her to understand me. She didn’t even get that.

Nobody has ever once been on my sidelines except for my kids saying, You can do it! You can move forward. You know, we’ve got your back. And I wanted my mom to do that, and she couldn’t. And then I couldn’t save her either.

And so, you know, on the day when I’m having a good time with my twins’ birthday party, when they’re two, she’s laying in her bed, dying.

We got the autopsy results, and she died of morphine toxicity. The last year of her life was all about going to the doctor. You know, I took my pill this morning and so, I feel better and you know, I’ll take another one a little bit later today.

That’s all it was. Every single thing was about that particular pill which made her life so much better than everybody and everything else around her.

If I was able to sit in the front of the doctor today, I would like to say to him: If family members are involved in the patient’s life, and they’re telling you the best day in that patient’s life is the day they get to come and see you because they know they’re going to get their prescription refilled, and how this is destroying, actually, the entire person that’s sitting in front of you, that is your patient -- it would be really great if you could just listen.

*And I don’t know if the motivation for writing the prescription is related to great incentives for doctors. I don’t know if that’s the reason.

I don’t know if you really felt sympathetic to my mother because you thought that she really was in pain. However you really only saw her for like seven minutes a month, so you didn’t really know her.

And maybe it was just the time, late 90’s, early 2000’s. Maybe enough wasn’t known. I don’t know. Although I find that hard to believe because it’s highly addictive even though it was toted originally not to be.

It would just have been nice if you just would have listened.*

My name is Lisa Curtin and this is my story.

Andy Viner Seiler -Surviving Withdrawal

Andy Viner Seiler was prescribed opioids by his doctor to deal with pain.  He was hooked and his doctor wasn't helpful.

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Withdrawal is the worst.

I mean, here I have an illness and the pain is just unbelievable. And then I find getting off opioids is worse than that.

It all began in 2004. I got hit with something called Ramsey Hunt Syndrome. I call it the evil cousin of shingles. It’s the same virus. Basically, all you have to have done to get it is to have had chicken pox when you were a kid. But it’s rare enough that nobody’s doctor ever diagnoses it correctly. That’s what happened to me. So I got sicker and I got sicker. This thing attacks the nerves in your face. It looks like Bell’s palsy. It feels like – oh my God, it’s nerve damage. It’s insane pain.

Now the doctor, the same doctor who misdiagnosed me, gave me a whole mess of meds, antivirals and things, and he threw Oxycontin actually, into the mix.

And after awhile, I didn’t know why I was sticking to him so I went to a specialist neurologist. Unfortunately, I was seeing that neurologist for more than ten years. She would put me on higher and higher does of opioids. And I didn’t even know what they were. And I remember that I’d been on them for several years, and it started to dawn on me that opioids might be the same thing as narcotics.

There was no publicity about these drugs at the time, and in fact she told me they were non-addictive, which is what the manufacturers said at the beginning.

But I was just beginning to figure this all out, and I said to my neurologist, “Is there any difference between these drugs you have me on and heroin?”

And she said, “Oh, it’s totally different from heroin. When you buy heroin on the street, you never know what quality you’re getting. And this is pure. This is good stuff.” And I’m like, Oh no. And that was when I first realized I was in big trouble.

They had me on an enormous amount of Oxycontin and Percocet around the clock. This went on for thirteen or fourteen years. Every once in a while, I would realize that they weren’t doing a very good job compared to what they’d done before so I would want to get on more. And she’d prescribe more.

It was only in the last couple of years, things changed so much. All of a sudden there is heat coming down on the doctors for prescribing this stuff. So, all of a sudden my neurologist -- she just totally changes her tune. But she doesn’t just change her tune. She starts to rewrite history. And it was something that my wife and I both noticed. She suddenly started saying things like, “Well, that’s why I’ve been trying to get you off these drugs bcause they’re not good for you.” And it’s like, You’ve never said that before.

By this point, I was on such a high dose -- because your body adapts and it starts tolerating a higher and higher amount to just do the same thing. And what eventually happened was we managed to immediately lose an entire huge vial of Oxycontin as soon as we got the prescription filled -- which we later found. But, while we couldn’t find it, I mean all of a sudden I didn’t have any, and my neurologist just freaked out. She became convinced that somebody was selling them or something was going on, and she wouldn’t prescribe anymore, probably because she couldn’t prescribe anymore, but I don’t know.

She just fired me as a patient. She gave me a referral to a pain clinic. But she didn’t follow up with me or anything. And I guess what most people would do is immediately go on the street and try to buy heroin or something. I mean that -- I could see exactly how that would happen.

But, I just realized I’ve got to detox myself and I’m not going to go to a clinic. I’m just going to do it. But it took a long time and it was horrifying.

You’re incredibly hot and then you’re incredibly cold. And I mean like you can put on all the clothes you’ve got, and cover yourself in blankets, and you’re still freezing. And sometimes your head is sweating uncontrollably and you’re unbelievably hot in your head but your body is cold. And you’re just in horrible, nagging, gnawing pain.

It also does a horrendous thing to your digestive system. When I first got on these drugs, I got so constipated I thought I was going to die. But when you’re getting off the drugs, of course you have the opposite situation. I mean, this is disgusting this part of it, but diarrhea isn’t even the right word for it. I mean it’s just about a hundred times worse. And it doesn’t stop. I mean even after you finally wean yourself off the drugs, it lasts for another month.

I started about the week before Christmas. I did not completely wean myself off till sometime in February. But I do feel better than I did when I was on the opioids.

The other thing that kills me about it is how expensive it was, because insurance just paid for a very small amount. And boy, would I like all that money back again.

It was like climbing down a totally vertical rock cliff. So you’re terrified. And you’re working your way down, climbing down and climbing down all day long for a really long day. At the very end of it, you look down, and the ground isn’t any closer. That’s what it was like.

I’m Andy Seiler and this is my story.

Bob Nicklas -Fentanyl Saved My Life

Bob Nicklas underwent a complicated surgery to treat his lung cancer.  Fentanyl was the only drug that brought him real pain relief.  His doctors were vigilant about getting him off the drugs as soon as he could manage it.  

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Throughout my life, I’ve had a high tolerance for pain. I once played volleyball for two hours on a fractured ankle.

The doctor said you’re probably going to have some considerable pain. It gave new meaning for me to what considerable pain was.

Back in 2014, midyear, I developed shoulder pain, the type of shoulder pain you get maybe from lifting the wrong way. I went to an orthopedist. He suggested physical therapy. Went through physical therapy off and on for several months. It did not get better. Finally my wife said, “Look, there’s something wrong here.” We went to an emergency room, and within an hour the doctor came out and said, “I’ve never learned how to dothis any other way but directly – you have lung cancer. “

I had advanced stage three cancer.

In December of that year, I had what they call a lobectomy. So I had the upper left part of my left lung taken out, three ribs, various associated muscles, nerves. It was a seven-hour surgery. It was pretty extensive. To this day, I remember waking up in the recovery room, my wife Terri was there, so was my son Tim and my daughter-in-law, Karlee.

The first words that I remember out of my mouth were “Please someone help me with the pain.” I have never experienced pain like I had.

For the next what seemed like a lifetime, but it was over the next half hour to an hour, they played with a combination of painkillers which included fentanyl, oxycodone, a nerve medication gabapentin, and morphine. Finally, I felt like I was drifting off. The cocktail had begun to do its work.

I was in the hospital for six days. Once I got home I remained on gabapentin, fentanyl, and either oxycodone or Oxycontin -- whichever was doing the most effective job.

For me, fentanyl was probably the most effective. I was on a patch. I can’t remember exactly what the dose was but the patch was changed every three days. And I was on that for probably a good six weeks to two months after I was done with surgery. I still had pain throughout the day. Now some of that pain was just the surgical pain of having an incision, which went from the bottom of my neck down to below my shoulder blades. I could barely comfortably lean back. And that lasted for several weeks, even with being on the cocktail I was on. The fentanyl, though, was the most effective at keeping the pain down to a manageable level. And it was also the last drug I went off of.

Thankfully, I was at Johns Hopkins, and the doctors there basically, from the day of post surgery, were encouraging that I should take the drugs for as long as I felt I needed them but to be aware that the goal was to go off of them. Which was, I think, an important mindset because the pain could be really severe at times. But I was committed to try to go off of them in as rapid and judicious a way as I could.

I was a smoker. I was addicted to tobacco. So I had some firsthand knowledge of what addiction can do to you. I was in pain because of my addiction to tobacco.

My father was a doctor. He was in practice with someone who became addicted to heroin. And when my dad discovered it personally – I mean he walked in on his partner injecting heroin, and he left within the month. My dad was the one who – he would try to prevent people from becoming addicted. I mean, he knew the power of the drugs that he was at times providing. And I was bound and determined not to become addicted to painkillers.

As I was discharged from the hospital, I was given instructions that when I was ready, I could follow to slowly get off each of the drugs, and a suggestion as to which drug should go first, which should go second, which should go third. And the staff would regularly check in with me, and I had to check in with them. And they’d say, “Do you think you’re ready?” And at a certain point, I said, “Yeah, I’m ready. I want to try to start going off.”

I didn’t experience any withdrawal. And I think it was because of the phasing. My doctors had a good sense of which one to go first, second, third, and a timeline to do it.

I have been a lucky person. A very lucky person.

I’m Bob Nicklas and this is my story.