Season 4. Episode 7. Finding your way back after Chronic Pain drastically changes your life

Deana Kiser was 29 years old, living in Boston, enjoying a successful HR career, seeing friends, working out, enjoying a busy social life and her new boyfriend when a sudden and seemingly minor incident on an exercise machine turned into a battle with chronic pain that has lasted for decades.

She tried surgery, numerous doctors, drugs, and ended up on her parents' couch, depressed and dependant on opiates. How she made her way back to a new life living with the pain is her inspiring story.

Coming out of the "dark tunnel" as Deana describes it, took a lot of work and she now enjoys her life in spite of the pain she calls her "unwanted companion,"

Learning to persist despite obstacles is never easy, but as Deana's example shows, it is worth it. 

You can write to Deana at:

kdeanak@gmail.com

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Original music "Saturday Sway" by Brendan Talian

Transcript

Unknown Speaker  0:28  
Hello, and welcome to the Storied human. I'm Lynne Thompson. And today I have a wonderful guest that I met by accident. I was in a doctor's office and we just started talking. And I just warmed up to her right away. She just seems to understand people and we had, you know, not a light conversation, which I love. We went right into it. Her name is Dina Kiser, and she's an administrative assistant at a doctor's office. But I learned very quickly that she understands how difficult life can be. She's had a very long and difficult health journey. And she's learned to live with chronic pain, which is its own horrible story. But I was impressed with the things that she had learned how she came out of it. And I feel like we can all learn a lot from her by hearing her story. And that's, you know what we're all about here at the story of human. So welcome, Dina. It's so good to have you. I'm so glad we were able to do this. How are you today?

Unknown Speaker  1:21  
Good morning, Lynn. I'm doing okay. Thank you so much for having me. I hope my story helps people I'm looking forward to sharing.

Speaker 2  1:33  
It is winter, so it's cold. So my pain has gone up a bit as it does in the winter. But I'm doing well.

Speaker 1  1:41  
I just think you have a great attitude. And I know, it's not easy, but you have a great attitude. So why don't you just give us a little bit of a background like when I know that this started with an accident. And you've been dealing with this in your life, it's been you had to crawl out of a dark place. And you did that. So let's talk about how it started. So we can tell our listeners how it started for you. Okay,

Speaker 2  2:04  
so it was September of 2000. It was two months before my 30th birthday. So I was young, I was 29 I was living up in Boston, I was a young professional. And I really cared a lot about fitness. I was at the gym, and every night after work. And that was an important part of my life. I had an accident and injury on a cross trainer machine and a freak thing that I could not repeat. Probably if you paid me and I heard I ended up my workout gave the machine a big like push backward. And I heard a pop coming from my lower right hand right. Like back hit barrier around there. So I thought well, I'll just ice it can't be whatever it is. I never reported it which I later found that you had to report for to sue basically not that I'm so happy. But it was a it was their machine. And anyway, like I said it's no big deal. Iced it rested, it did all the things you're supposed to do. And it's getting worse. And it's writing down my legs, the pain it's taking, yeah, it's taking over my life, the pain just was wouldn't stop, it wouldn't abate. And I finally you know two months in or so said it's time to get medical professionals in the loop and figure out what's going on here. This is not a simple problem. This is life altering it I couldn't even think straight through the pain. Work I started to become a an issue. I was not doing anything socially with friends. I had a boyfriend at the time that was pushing him away. It was totally life altering. Got the doctors in the loop. And it was a merry go round a merry go round. I mean, I don't want to take too much time of going because that's a story in of itself of going to doctors hearing this or in that running this doctor that doctor the medical community became my life. Long story short, I ended up having three surgeries which I now know were never necessary a year and they said a ligament strain strain to my SI joint which is the hip joint that connects your hip to your pelvis. that's apparently where the problem started. So I had that fuse three times and pain down my legs. It took two and a half years so we had to answer for that. But that wasn't even related to the to the mechanical problem my and my SI joint that was that the injury sat off something called Reflex Sympathetic Dystrophy or chronic pain syndrome. It's rare, but what happened basically is when you're injured so you put your hand on a pot of boiling water boom. your sympathetic nervous system goes off it sends The pain signals it says Add Remove hands, you know, we get this remove the stimulus stimuli with RSD Reflex Sympathetic Dystrophy or chronic pain syndrome or peripheral neuropathy has many names. That neck, that system goes off in your brain to say, injury, you know, remove that stimulus, well, with RST, your brain gets stuck. And it's as if the that painful stimulus is already there, my body and my brain believes I am under attack 24/7 And it's sending out the signals, the pain signals, the circulation is reduced by shrinking, it's doing all of this as if there's an injury, you know, I'm still I'm still in injury mode. And so my whole my whole body is in pain, especially from the waist down, the mechanism has gone a little cuckoo. I tried many modalities, you name it, I try that acupuncture. Light Therapy, I've done just every medication under the sun, I was addicted, dependent on pranic. Ira opiates for a while thankfully, I'm off that. But yeah, and then I went into a deep depression for many years because it was so life altering I couldn't, I couldn't live my life. And that was a, it was a journey. It was a journey climbing by way outside that tunnel, and brings me to where I am now. Life is good. You know, I manage this pain, I've learned that it is a unwanted companion in my life. But I've learned that I'm in control of it not out of me.

Speaker 1  6:41  
I'm amazed by that. Because first of all, you were young, and it was a total shock, right? We're not prepared for something like that. And I'd never heard of this. It makes sense, though, that some people there, their body just doesn't realize they're not in pain and the brain is sending those signals. Right? I can't imagine going through that at that at that age. Now, where are you in your career, then I know you had a whole different career.

Speaker 2  7:05  
Right? So I was a human resources consultant, I had moved my way up from doing eyes on some benefits work and that I was doing some recruiting. And then so my last role was an HR consultant. And I was doing recruiting Employee Relations. Some benefit, we're working with our benefits administrator working with, you know, our recruiter, singular recruiters. So doing a lot of like a generalist human resource generalist work. And yeah, I really liked the role it dealt, you know, I dealt with people a lot and interviewed them. And I enjoyed learning about them. So I enjoy people,

Speaker 1  7:51  
I noticed that, that you really do connect with people, I bet you were great at that. That's that really feels like your, your area, you know, oh, thank

Unknown Speaker  7:59  
you.

Speaker 1  8:00  
I enjoy that. But you had to give that up, didn't you?

Speaker 2  8:03  
I did. So it just became it wasn't September 2000 was my injury. I worked as much as I could getting into the office. And then it just became like, Wow, I can't handle five days of the week setting. I mostly sat at the desk, and I can't do this. I physically can no longer do this. So this was way before COVID My boss was just very understanding and didn't want to see me go. So he allowed me to work from home. It was because then I could but you know, it was before zoom, it was before video. So I was literally though, in my pajamas, lying on my bed with my laptop. You know, that's the only way I could get through my day. And then I had my surgeries recovered from them. And then it just became like, this is all too much. I still can't think I can't think the past the pain. And it was just a mutual decision that, you know, we probably sucked part ways. So I gave up my career. And then I was disabled for many years. And yeah, I think about how life may have been different, you know, without the injury without the path that I'm on now. But yeah, I

Speaker 1  9:25  
had to give it up. That's a lot to handle. I'm just amazed that you were able to come out of that. Right. So you fell into a depression. Did you I remember you talking about moving from Boston, you moved riding with your parents, right?

Speaker 2  9:41  
So two and a half or two years in since the injury. After the injury. I literally couldn't take care of myself and financial aid started to become a concern. And you know, I wasn't even Doing a lot of the basics in life, like my grocery shopping had become a problem. I was getting my groceries delivered. This was, you know, years ago before it's commonplace. I fell into a severe depression. Just push away my boyfriend and that that relationship ended that couldn't sustain this because we had only been together eight months. So that wasn't, you know, it wasn't like we were together years, we could work through it. I just became a different person, that relationship ended. And I wasn't even talking to my friends. I was not returning phone calls. So I was a wreck close, I was turning into close. So my parents stepped in and moved me back to their home at that point, I'm almost 31 years old, and moved me into their home back in New Jersey. Never want to be back in this area. You know, I kind of said, I'm glad to hear ya. Small little farming town. And you know, I'm too big for this. And loved my life and Boston. But yeah, so then when I was back my parents, I mean, the depression was severe. Some beer, the depression, I mean, I, I miss, you know, I should be embarrassed to say this, but I didn't shower, I didn't so much. Just brush my teeth. Think comb my hair, I lied around pajamas all day, every day, just the zombie. I had become a zombie. And many years of that. And then I eventually moved into a small little studio when I say small it was, it was ridiculously small. And it was not a nice place or a nice atmosphere. A couple of towns over a little small condo, our own apartment, that's all I could afford. I was living on disability, I had exhausted all my savings, except for you know, investments, but my expendable savings, I had exhausted everything. So I was living. Wow, the lifestyle was a was a it was hard to swallow hard for me to accept that that had become you know, so low, low income. And then and I gained 160 pounds. Because Because I couldn't work out I didn't I was drinking almost 2000 calories of soda a day. carbs, sugars, all the things that, you know, I used to care about, I didn't care about I knew what I was doing wrong. I was in denial about my size. And you know, I didn't it wasn't the same person. I didn't look like the same person. It was just an eye when I think back to it, I think Wow, did my life really, really, really get that low? That carried on for, you know, years, decade over a decade? And then I don't know, one day I saw a picture of myself at a family reunion I wasn't allowing cameras on myself the time but my aunt you know has thrown was a family unit and separately are quite Frankel took a group shot of our entire family. She sent out a pet the copy to everyone and I can't tell you I don't know exactly what clicked in my head. But I saw that picture and thought has it really come to this? Do I really look like this? Is this the Is this what I want us out to the world. I physically looked like my pain. You know, my intent, my insight pain now took over myself physically. And I was i i looked like how I felt. And it just boom, like it just clicked I dumped on my soda. I got rid of the carbs got rid of the sugar. I want to get a tip the again. But I knew at this size, I wouldn't be able to do anything on land. That pool is the only way. So I joined the line got into a water aerobics class. Those woman in the pool were much older than me and became like mom like figures. Because of that, right? I lost my mom and 2011 so these women became like mom like figures. And we would just you know, touch base every morning. I'd never missed a day class. And yeah, I've lost all that weight. And then I came off the opioids I was on I got I'm better medication. I've learned that I can still live with this pain. And then I got a part time job.

Speaker 1  14:33  
I am amazed that you pulled yourself out of that. And you had that moment when you saw yourself in the picture. And I think a lot of us have a similar moment like we don't want to face how we look I've gained weight and when you see those pictures that kind of wakes you up but all the things that you did afterwards. It amazes me because a lot of people just have a hard time doing one of those things that you took care of yourself that way and I've done water aerobics. So those ladies are wonderful at the why now, right? So great. I'm so amazed by you that you were able to come back. And I know you probably have the same feeling I do, because I was ill with a couple different diseases, I had Lyme and I had polycystic ovarian syndrome. And then I had Hashimotos thyroiditis. And it's not, it's not chronic pain, but it definitely interrupted my life. And I look back at that period of time now. And I feel like I could have done better, you know, I feel like it was kind of I was stagnant. I mean, I got laid a tiny bit, I know that chronic pain is totally different. And my mother was in chronic pain. And I saw what it does to you like how it interrupts your life. And what hurts me the most is hearing all the things you were forced to give up your job, your friends, your boyfriend and the about the depression, I also get mild depression sometimes. And I always tell people, it's not about being sad, necessarily, right? It's about, it's about being nothing, it's about being numb. Right? Right into that thing where you're just numb. And that's fine with you, because you don't want to feel I totally get it. But the fact that you could come out of it is very inspiring, because people sort of feel like, you know, this is it. I'm gonna have to be like this forever, but you changed it. And I feel I feel like you can help a lot of people by telling them how

Speaker 2  16:28  
you know, so I want people and young people in pain, physical, whatever, some kind of pain that they're, you know, you can climb out of the tunnel. It you know, embarrass you, but you can climb out and lead I have to tell you when you said numb I back when I was numb, you know, comfortably numb the song. Yeah, I would play it non stop and just lay there non stop and just play. Yeah, yeah. Yeah. And so how

Speaker 1  17:01  
we protect ourselves, I think sometimes sometimes it's just too much, you know, body. I don't think people understand either that depression is a physical, you know, there's a physical component to it, you, your systems, your body is literally lowered depressed. Metabolism isn't as quick, your mind isn't as quick all the all the things that used to be at a optimum speed are depressed are lowered. And so there you were, I mean, a lot of people would not climb out of that. And I still am wondering, what do you think enabled you to do that? When you saw that picture, and you were and you made those changes?

Speaker 2  17:38  
No, it was like it just something that I don't know, something just clicked in my head and said, you have to change you have to live a life. You have to look learn with a glimpse at this pain, you need to get back to yourself, you need to dig and crawl and dig your way out of this and find find your way back to the light. And it was a process and it was getting to physical activity, changing my diet, losing the weight changing by doctors getting off the opioids and finding a different way. And now actually, I'm to the point where I work I do work out now every morning, I do Pilates, and yoga. I took a yoga class a few years back after I lost the weight and got back into life. But now I do yoga at home I take I do Pilates and yoga. Every morning, I get up around 5am by 530. I'm down on my mat doing it, it releases the dopamine, the endorphins, all those feel good chemicals. And are despite living with pain, the physical pain that a lot of people could never imagine. Despite that, because I'm releasing those feel good chemicals in the morning. It just sets the tone for the day. And I am like I can deal with this. I can I got this, you know,

Speaker 1  19:02  
so impressed with you. What occurs to me too, is that you were before this in the habit of very you were very good about working out, you had that sort of discipline. And so you got that going again, like you you had that before, and you were able to like return to that some form. And so you were so also what occurs to me is that there was a little spark still inside of you of the old you that little spark that never went away and you you reconnected with it and you're like I know I can be like that person again, you know, maybe not the same but I can be like that person. And you found that spark and you worked your way out. I mean one of those things is amazing. Losing all that weight is amazing. Getting to the point where you could work out is amazing. Getting a part time job is amazing. All those things you did, and I saw a person when I met you at the doctor's office, I saw a really happy person. I saw a giving happy A warm person. And I would have never guessed that you were dealing with all this. Thank

Speaker 2  20:05  
you. I am happy. Listen, I'm very happy. I'm content happy. I'm socializing. Again, I reconnected with old trends. I got, I see childhood friends who still live here. I reconnected with my college friends. And we and we celebrate the 50th birthday of one of my old roommates. And it was we caught up, you know, on everything, I still have more living in different areas of the state that I need to have reunions with. And I've made new friends. I've made some new friends, my pool ladies through work through different social things I do. I want to start volunteering Meals on Wheels, I contacted the the administrator they aren't, we're working that out. That brings me joy, the idea of helping a shotgun, I was once a shotgun, and just coming in and you know, not only delivering their food, but providing some conversation and company, you know. And, yeah, I'm happy. I mean, dating again, which is, is challenging, because you I feel like I'm presenting I'm, how do I present this, that I have this pain, this, this, this? This, you know, the pain is a part of me. And that is enough to disable me and that I my job is only part time. I don't know, you know what point to say all that and not scare someone off. So it prevents presents some challenges. You know, I feel like damaged goods in some way in that regard. I'm not I'm happy and content. But you know, I do have this. It's just, you know, part of the package. constant companion. Right? It is. Yeah, yeah, unwanted one. But yeah, learn

Speaker 1  22:05  
to live with it. I'm sort of amazed that you've put all the pieces back together. And I know you've written some of this down, but it sure sounds like it should be a book.

Speaker 2  22:14  
Yeah, my I did write a short story. And I am topping that around. I do. I don't think my story in and of itself is a page turner. But my I would love to garner get to gather some attention on the short story and see what kind of, you know, possibility. So our publishers or something, I think I liked the book idea of not only my story, but a collection of other people who have come through the other side of this. And I think we're I think it might be a good story for people newly diagnosed people newly coming into pain to know it's possible to live with it. I also think that you know, the medical community needs some better understand the very complex problem of chronic pain. I think they're just treating it with band aids. And it's a complex problem. I mean, to come through the other side of this to say like, I seem content and happy I am. But the process, I also went through years of therapy, years of therapy of just, you know, purging, the loss, this loss that loss, nobody understands me, nobody understands this, I feel alienated I feel like I was like a foreigner in a strange land like, you know, just the years of therapy.

Speaker 1  23:42  
Good for you. You do feel like, you're very persistent. And I feel like that's when when you hit something like this in your life, being persistent, and keeping you keep trying things and being stubborn, I think helps. I'm like that I never stop. I never stopped trying things. And so I feel better now than 10 years ago, I literally, it's been a lot of my own hard work. And I agree about the medical community. They didn't. They tried, but they weren't able to help my mom very much. And you know, what hits me Dina is I keep seeing those commercials about drugs, right? They always have a commercial about whatever drug it is Lyrica or, you know, whatever. And they they sort of present it like you'll take this drug and you'll be fine. And I think people have accepted that narrative. And so they think there's something wrong with you. Right? They don't want to accept that some people's pain doesn't go away. Right? It's kind of immature to think, you know, that simplistically that you take a drug, and the pain goes away. But I think we are raised that way. We're raised to think that way and we're not prepared, that sometimes suffering will continue and you have to learn to live that life, which is not something you're taught, right you had to learn so much about how to live and also I don't want to under undermine the grief that you went through like you had to give up that life that you thought you would have. You had to give up for a short time your friends, your boyfriend, there was so much loss. And that's bad enough, but then you feel isolated. Because I know people said to you, have you tried this? Have

Speaker 2  25:22  
they all had the answer all, you know. Yeah. And I've tried everything.

Speaker 1  25:28  
Yeah, so well meaning, but it what they're really saying. And this, this happens with grief, too. People really don't want to go there. Because it's so upsetting to them to think that they might get something that they can't heal, you know what I mean? Right? People don't want to deal with the depths of people suffering. And so and they mean, well, they're trying to suggest a, you know, a solution, but they also don't want to go all that way and feel all that. And like my whole thing is, we all go through something we have to learn to remember that humanity is connected through these experiences, grief and loss and pain. We all have something, okay. Some of us may not have, you know, as bad as others, but we all have to recognize that this is life. And we have to stop pretending like, you know, a drug can fix it. But you know, it's like, it's a nice idea. But it doesn't work all the time.

Speaker 2  26:22  
Western medicine, their solution is surgery, and drugs, surgery. And yes, I really from being on the merry go round, I really feel like our system is broken. I just Yeah, I think the medical community is broken. Where I got where I get the most relief is meditation, or, you know, more natural approach more homeopathic approach. That meditation, yoga, Pilates. And there is one that occasionally we take, it's a non narcotic. And it does how with this sensation of the bloods of the lack of blood blood circulation problem, my legs, one medication. Yeah. But all of those opioids I was on prior to the opioid crisis. I mean, it was like, you know, I'm lucky to be alive. I'm lucky to live through the amount of medication they're putting on me. You know, yeah. So

Speaker 1  27:20  
struck by the fact that you mentioned meditation, because I talked to a lot of people on this podcast, and that keeps coming up, that we have to practice mindfulness. And that meditation really helps center us. And we can find more peace that way. I love that you're mentioning that because you've tried all that other stuff, you know, the awful opiates and the surgeries, and you've tried that Western medicine. And it can help sometimes, but I really feel like you've just come to a balanced place like you've accepted where you are, and you're making the best of it. And you made your you put together your life, you put it back together? Yeah, I don't. I don't know if you even know, like, we don't know who listens to these conversations. I've had people come up to me sometimes. Like I went to a reunion, like a casual local reunion of my high school friends. And somebody came up to me and gave me a hug and said, I've listened to every episode of your podcast, like I don't get that feedback. It's not the same as you no comments in, in Facebook, but people are listening, and they're going to be touched by your story. And if they're not going through chronic pain, I bet they know someone who is and it's going to help them understand that it's deeper than they thought. And it's harder than they thought. And it's more isolating than they thought. So maybe you'll help somebody help someone else, which I love. That's, that's really, really important. So I'm going to, I'm going to ask you to sum up, if there was one or two things that you could share with people about how to help someone who is in chronic pain, or if they themselves are dealing with chronic pain, what would you tell them?

Speaker 2  28:57  
What you just said the word isolated? That is that's exactly how you feel when you're in chronic pain. And I think if they if they know someone in chronic pain, if they can just try to keep in touch and say, I don't understand, I'm not living this. I'm not on this journey. But I I'm there for you. I'm there for you know that I understand your pain is real, that you're in it properly in a medical merry go round and you feel alone. You're not alone.

Speaker 1  29:34  
Yes, that's what you could have used. And I know that isolation makes everything else worse. Like that's what's so sad about it is we don't offer a lot of solutions to people who are in chronic pain and dealing with this and then they feel isolated and makes everything worse. Right. So I love that tip because, again, we're all in this together. And we don't I wrote a thing on medium about how some we we sometimes just don't know why things happen. And we have to be comfortable with not knowing. We can't grab easy answers or tell you what drug you should take. We just have to accept that there's a mystery to our lives. And there are, we don't know the reasons why things happen. We don't know why people have, you know, chronic pain or don't have chronic pain, we just have to accept that this is what it is right now. This is my life, and I'm going to make the best of it that I can. And that's what you've done. I think that you don't even realize how inspiring that is. Oh, thank

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