Mother of two, Carey, 56, is recently married for a second time. Her pain started at age 25. She had an appendectomy as well as two other surgeries which she thought would solve her chronic pain issues. Carey saw roughly thirty doctors until one finally diagnosed that her pain was coming from her back. Carey considers herself a “classic case.” She tried everything—especially holistic approaches—to avoid surgery. Carey felt like an actress: she would hide her pain from others and during uncomfortable activities only her family really knew what was going on.
My name is Carey, I'm 56 years old. I am a mother of two, 25 and 22 years old. I am married and I'm a writer and that's what I love. In November of 2013 I had a two-level lumbar fusion and then scoliosis surgery. From 25 years old, all the way until I was 55 when I finally got surgery it was this wild journey and I had an apendectomy thinking that would get rid of the pain. I had two other surgeries, they thought it was female related and I continued to have pain. But just on this lower right, they call it lower right quadrant. And finally after I probably saw 30 doctors and had six procedures, surgically.
Finally, someone figured out that it was my back. So, the pain that I was experiencing in the front was coming from the back. And so, over those years I tried everything. I mean, I'm the classic story. I tried accupuncture, every holistic thing you could do, herbs, meditation, um, I did everything but surgery on purpose because I knew that was the last-last step. Life with chronic back pain is a life of being an actress and frankly, pretending.
I'd done things like gone on, you know, obviously on a boat in Tahoe that's going really fast and it's bouncing along and all the time the way I've lived with it is I've pretended. And then I would go home and when things would quiet down then everything would-it-it would flare up, and only my family, really only my family really knew what was going on. When you have chronic pain, chronic back pain in my case, it affects how you walk through life because you have to think about, if I'm going to be on an airplane for five hours then this is gonna happen. Or, if I'm going to a party and I want to wear pretty shoes, this is how I'm gonna feel. Almost everything I do, daily, is filtered through how will it make me feel physically? And if I decide to do something more active, I kinda know I'm gonna pay for it.
Actually, this is really silly but I picked up a puppy. I was taking a walk one day and there was a dog that was loose in the neighborhood, I thought it was 20 pounds. And, I picked him up and there was a big gate that he had obviously escaped from his house, I saw the address and I buzzed, no one was there. So I picked him up and I lifted him up over my head and I tried to sort of gently and I did it, I was successful in getting him back behind the gate. But my back went out and I ended up in surgery about five days later. Couldn't go any longer.
So, as anyone who's had surgery knows, you go into surgery and then you come out and then in a big surgery... I was in on a Monday for seven hours and then that was for my fusion and then I had to go back in on Wednesday for scoliosis surgery. I don't even-I don't think I heard him say Wednesday. It's-but-I-meaning I wake up on Monday after eight hours so it was-it was well into the day. And you're so groggy and you're so out of it and they have you so, so much pain medication in my body and I was just not even there. I was in a completely different world and everything thing was being done for me. I had catheters, I had obviously IV's, drains, I mean, I was completely non-functional and they kept me doped up that whole next day, the Tuesday because I was going back in for scoliosis surgery.
I have no memory of going down to the O.R. or coming back up for scoliosis which is to say I was completely... and I'm-I'm sure this is purposeful, they just kept me in almost like a twilight state I would say. As the days passed and I began to wake up, and they want you to get up and they want you to walk. And, they had me walking like baby... I mean, Wednesday was surgery, they had me walking by Friday morning still with all the things, you know, attached and it was s-so painful that I was sobbing. I had a walker.
Here I was still a relatively young woman and I had a walker and I couldn't sit up, I couldn't stand up erectly and it's so heavy, it's so intense. I mean, I'd never had anyone bathe me or when I had to go to the bathroom, I mean, that whole thing was humiliating and this is the other thing I would say to anybody, choose their hospital very, very, very, very carefully if you can, if you have a choice. Because, in a situation like that, you want the best and I will say that this hospital that took care of me was premier and they did take care of me beautifully in light of the fact that I had so much going on.
Because they were opening me up in the front, the side, and the back. When I finally saw my body, I just, I was just, I was shocked. They did bring in physical therapy to the room and that was interesting because I was having to learn things that we do so intuitively. But it's all about your functionality and every-every element whether it's your emotion, the way your body moves, everything is affected by this. Coming home, one... I would say to anyone who's watching this, if you don't have someone at home with you absolutely bring in a friend or a cousin or something. There's no way they could send me home alone unless they kept me longer. Maybe well, 12 days as opposed to maybe eight.
Because I wasn't really ready. Because I wasn't able to navigate as I needed to. Even to go home with a spouse. So when it came to, maybe she should go to step-down rehab, I wanted to. That's how scared I was and that's how terribly I felt. I wanted actually to remain, if you will, in the arms of the professionals.
It was really scarey to go home. And I had a walker you know and my husband was lovely and got me situated and then a nurse did come for probably the first five days and she would come and check my vitals and then I had a physical therapist that came to the house. So I was tended to in my home for probably the first six weeks.
When I was at home recovering, I pretty much stayed in bed. I couldn't lift my arms to wash my hair, I had a little stool in the shower like an old lady and I think I had a chair near the sink so I could, you know, sit and brush my teeth. Then I had to have a little step by the bed so the whole household, the tenor of the household changed. Then my children came home for Christmas holidays so the whole tenor was about me and moving me around and making sure you know, that I was taken care of. and I had so much medication. You can't be alone because you could take the wrong pill or too many. The recovery period was-was daunting for sure. But then you know, you start to feel stronger, better. But you have to be pretty determined because it would be really easy just to lay on the couch and take OxyContin. [LAUGH]
When you can't walk in the beginning, when you're having trouble walking, I would see people on the street, women my age, jogging or even on a brisk walk. And I remember feeling envy so it's not-it wasn't even anxiety as much as envy like, their bodies are working. I guess it is anxiety about my own physical self and what my limitations may be and that took me a while, it was only after I got to feeling better, became better at my movement that I started to feel like, oh yeah, I can take a walk. I can do what they're doing. But again, if I overdo it, I pay the price.
Let's be honest, if you can't... I mean, I am now [LAUGH] I am now locked at my hips. Where I used to be able to... I was a dancer, I could do everything, I was hypermobile, in fact the reason I had surgery is I was hypermobile. I was too flexible, my gift turned out to be my curse. So when it comes to the intimacies of life, I have to be kinda clever and smart and you just figure it out but you have to be really honest with your partner. After surgery managing my expectations were difficult because I had a picture of who I was and the way I had behaved before physically meaning being very active, running around, doing everything.
But then to manage afterwards, it was game over because I no longer, at least for the beginning recovery period, I was not in charge of my body. I had to learn how to move again. I had to learn everything, how to get in-in and out of a car and I realized that I couldn't sit for very long and if I flew, I'd have to be able to lay the seat back or go back where the, you know, stewardess is and stretch. So, managing my expectations was very difficult because I was pretty stubborn and I want to be the same and I thought I wouldn't be in pain anymore. So, I'm basically two years out plus a few months, I would say that I am still challenged.
I'm better in the sense that I no longer worry about my back breaking. When you have a spine that's too loose and discs were slipped and nerves were pinched I was always very fearful that I would fall or somehow hurt myself. Now, I'm ramrod straight and it would probably take a lot for me to hurt my spine but I am dissapointed right today that I'm not better. And that was probably unrealistic for me and I would say again to anyone if you go and you decide on surgery that you do have to manage your expectations because you just don't, you know, leap out of bed and you're perfect.
After back surgery, any surgery, but I would say particularly back because you're so immobilized, the relationship with your partner changes from you're cooking dinner and taking care of them, giving them smooches to they're shampooing your hair and they're taking care of, you know, everything. All the most intimate things that we all do and you have to let go, it's really, really, really hard. It depends on personalities but you know, some people are a little more free with themselves and they're just fine. And even if you're in a relationship, you have your own life and all the sudden, you don't because you need them. But if I had been married 30 years, I probably would'nt have asked my physical therapist about it.
But, here's the bottom line you have to decide, again, it's about deciding, am I gonna be sexual again? Do I have that desire? Because everything's tamped down, you're taking drugs. But if you're in a relationship and you love somebody, male or female, you want to give to them... have a normal life. Because you don't want... I mean it would be so sad to have a young marriage end, or even an old marriage end because one partner left it emotionally and physically. I would say to somebody to not go into surgery until you know you've got everybody routed, that you know you've got your people, you have your team and that can be one person or a-a spouse and a child but you can not-you can not be alone, no way.
He was wonderful and I was very, very lucky. I chose well, not knowing that this was coming down the pike. He had nursed his mother through cancer and his father had also died early so what I realized when we-this whole thing started is he actually knew how to do this. He was better than I. I was more squeamish. I was reticent to have him go the places he went but he had nursed his mother through cancer and it was really, really rough. And so for him, he was able to see me through different eyes. He didn't turn away, he wasn't afraid of what I had-what I felt I had become. I lost 25 pounds it's was just wild, so I became a different person. So my caregiver, he was present for me in the darkest, darkest, darkest moments.
Establishing a relationship with a doctor, it's a journey. I mean, I've been to you know, like I said, probably 30 doctors. You have to find someone that's smart, that you have a connection with, that listens to you, and that you trust. And that sound very sort of obvious but it's not because you're overwhelmed by feelings and emotions and you're a... Once you've found that person, and I did and it took me many years. I made a plan with him and he said I don't think we need to go to surgery yet, let's do this and this. And we went through all the steps, obviously the diagnoses, the-the MRI's the CAT scans, we did some MRI's with contrast to really get good pictures. That's the other part is you want to get really good screens and some are better than others.
And I learned, you know some labs are not as good as others and when you go to a specialist, you can go with your current films but the truth is, they're gonna want to take their own and I actually get that. Part two is if you can have someone with you at the appointments, it's huge. I went at it alone 'cause I was single for about half of this time and so, it was just me and my children were younger and I did not want to drag them through it. So for me, especially the relationship with the doctor was really important. I really depended on him more because of that.
And the last part is, you make a plan and literally you say, if this, then that and you just, you go through the steps. I'm two years and a few months out and I'm incrementally better. The most important thing that I've learned is patience. Some people will go into this situation with more patience than I have. But, you learn the truth about your body and you also learn the truth about yourself. After a surgery like this you get to decide who... Who are you gonna be? Are you gonna be the person that everybody knows well she had back surgery and never recovered or she had back surgery and she still is hurting or you be the person that, I heard she had a big surgery and did you hear a book just came out?
No matter how bad it is, you get to decide what your story is gonna be. And so for me, I'm still in it. I was at physical therapy earlier and I had a really rough day yesterday, am I gonna be an actress or am I gonna tell the truth? I'm telling the truth. It's still hard but caregivers and children and doctors aside, the only person, the only person that you really, really, really can depend on and that you can manage is you and your body. I'm saying it can be done. But you have to decide every single day, how wanna live? How you wanna live? How you wanna live? How you wanna live? How you wanna live? How you wanna live?
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