Carey’s Support and Communication

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ContributorCarey, 56Read Full Bio

Biography

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.

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ContributorCarey, 56Read Full Bio

Biography

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.

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Carey had her surgery in 2013, and since then she has felt a lot less fearful about when and what will hurt her spine. She feels both disappointed that she is not perfect and that she is more reliant on her family. The relationship she had with her doctor was paramount. Carey stresses you must have someone who comes with you to your doctor’s appointments to understand your recovery plan and help keep you on target. She wanted to make sure she didn’t rely on painkillers. Carey stresses patience is key.

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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