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107: When Pain Takes Everything
Episode 728th June 2021 • Hope For Chronic Pain • Dr. Katinka van der Merwe
00:00:00 00:45:45

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Warning: This episode contains stories about suicide. We are adding a strong trigger warning for those who may be affected by this content. If you are having suicidal thoughts, please always have the National Suicide Prevention Lifeline number on hand. That number is 800-273-8255.

Almost every chronic pain patient will, at some point, have suicidal thoughts. This is the shadow of pain that we often don’t talk about. Patients may find this shameful, and therefore hide it. We believe that by casting light on this issue, we can open a dialogue and bring this dark, physical and emotional pain out of the shadows. It is very important that the patient’s loved ones understand this side of chronic pain. Recognition decreases isolation. Hold on, pain ends.

Transcripts

Kaylie (:

Hi, everyone. Welcome to the hope for chronic pain podcast. This podcast is brought to you by Dr. Katinka van der Merwe. Dr. Katinka grew up in Johannesburg, South Africa as the daughter of a successful chiropractic doctor. She followed in her father's footsteps and graduated from Parker college of chiropractic in 1999. She has since gained a reputation for developing a novel non-invasive treatment system for neurologic rehabilitation of chronic pain, resulting in breakthroughs for even the most hopeless and severe cases. Her and her team have gained international attention due to their unprecedented success rates in these cases. Kent State University is slated to be involved with the first study of her work starting this year. She is an international speaker and bestselling author of three books. Putting Out the Fire, Taming the Beast and Wake Up Miracles of Healing from Around the World. Dr. Katinka practices in Fayetteville, Arkansas, and as a CEO of The Spero Clinic today's episode contains stories about suicide. We are adding a strong trigger warning for those who may be affected by this content. If you're having suicidal thoughts, please always have the national suicide prevention lifeline number on hand. That number is 800-273-8255. Hello everyone

Dr. Katinka (:

Hello everyone. Thank you for joining. Today's podcast was done differently. We started off telling one story and it does involve suicide. So, this is also a trigger warning for those listening. If this is something that is on your mind, or you feel like you could be triggered by a story about suicide, please do not listen to this podcast. So, we recorded the first story, Elle’s story, which is very close to my heart and listening to the recording while producing, our producers have concerns that this may be too heavy a subject or some may find a triggering. So, I thought about it and instead of canceling the podcast, I decided that while it is a heavy topic, it is a real topic for this community and it is a story that should be told. So instead, we decided to add another story also involving suicide, but with a different outcome.

Dr. Katinka (:

Today I want to talk about chronic pain and its devastating effects on the person who suffers from it and those around them. How do you love and support someone whose daily existence consists of pain? Chronic pain affects more than 10% of the population. Almost half of whom report considerable pain. Researchers retrospectively analyzed death registries in 18 US states determine prevalence and characteristics of chronic pain in suicide deaths between 2003 and 2014. They found that chronic payments present in 9% of 123,000 people who died by suicide. 50% of the chronic pain patients report having suicidal thoughts. Chronic pain alters the brain’s pain processing systems, changing the brain structurally, functionally, and chemically. Structurally researchers have uncovered a decrease in the brain volume in a number of areas. One area consistently affected is the prefrontal cortex. This is the area in the front of our brains that is involved in attention, organization, and problem solving. Functionally in chronic pain the brain's ability to inhibit pain is reduced. Chemically chronic pain patients have reduced levels of neurotransmitters, such as serotonin, and norepinephrine, which helped regulate both mood and pain sensations. When those neurotransmission systems are not functioning properly, people are vulnerable not only to chronic pain, but also to depression.

Dr. Katinka(:

That's one reason why depression can physically hurt. Biologically, pain and depression are very closely connected. Today, I have a very special guest who is very close to my heart. Doctor Vanessa Seiden is the author of a book called Ravens and Rainbows. This book is a phenomenal piece of art. It was also written by her daughter, Elle Grey. Vanessa is the mother of a daughter who suffered from complex regional pain syndrome and other conditions, and who committed suicide at the age of 15. I highly recommend that anyone who knows anyone who is suffering every day, reads this book. I want to start with some of Elle's own words. “It's an inexplicable part of my existence that I'm condemned to spend every day up to the eyes in pain, every waking minute and agony fighting an unrecognized war. An unappreciated the truth with no audience to see my fight, no one to see my triumph and no one to see my inevitable defeat.

And even though some people care, they do not and will never understand that war. And that is why I will push them away. People will imagine idealized versions of my reality. It doesn't matter that it's wrong. I have to believe it's random because if it's not, God is unimaginably cruel. It's not that I love being alone. It's just that I don't have another choice. I have people who care, but I don't have people who understand. This isn't the kind of pain that makes you stronger. It's not the kind that you can learn from. It's the kind that makes you want to die. This pain is every shred of happiness and youth burning to death. I'm so incredibly overwhelmed by the fact that I'm unable to impart the knowledge of my existence onto anybody. We’re the only people who know what it is like to physically be us.

Everyone is trapped inside their own body, but all the words in the world cannot convey the burden of being stuck in mine.” (Elle)

Dr. Katinka (:

Vanessa, thank you to my podcast. It's such an honor to have you.

Vanessa (:

Thank you for having me. It is an honor to be here and, and just so incredibly moving for me to hear you read Elle's words.

Dr. Katinka (:

Yes, it's emotional for me too. It's a great sadness of mine that I never got to meet your exceptional daughter. Vanessa, you have walked a long road along someone who suffered from daily, excruciating chronic pain. Tell us a little bit about Elle's journey of complex regional pain syndrome.

Vanessa (07.04):

Elle, was diagnosed with complex regional pain syndrome when she was 12 years old. We were fortunate in that we got a diagnosis quickly and my understanding is oftentimes people can spend years before even identifying what it is that's plaguing them. It began in her left leg as a result of a twisted ankle at school. She was in sixth grade at the time and came home from school and said, oh, I kind of twisted my ankle at recess, which was something she would actually often do and she wasn't really in any pain and we didn't think anything of it and she woke up in the middle of the night and called me in her room and she said, “Mom, something is wrong. I'm on fire,” and I carried her to the car. She couldn't walk and into the emergency room and within a couple of days, they gave us a diagnosis and began treatment at a rehab hospital here in Chicago. Which supposedly was, you know, it was going to, to kind of cure this, this disease, if you will, within about eight weeks, is what we were told. That in young children, it usually resolved relatively quickly and, you know, we would do this intensive physical therapy and be on our way and the series of things that happened beyond that. Her pain spiked about halfway through physical therapy to a point where she could no longer even rest her leg on the bed because, the contact right with her leg to any, anything was just excruciating and so she would kind of hold it up in mid-air until she fell asleep. Then it spread to her right leg. Ultimately up her body, up through her lower back. She had multiple, multiple treatments of ketamine. She had multiple spinal cord stimulators put in. She had open lesions that formed. You know, ultimately a lot of her autonomic nervous system started to shut down. She couldn't regulate her blood pressure, her heart rate, her digestion, her bladder, her whole body just started deteriorating. And in the, you know, all in the backdrop of having the sensation of being burned alive. So, she spent three and a half years, bravely and courageously and stoically fighting this disease and enduring every treatment that we could find and every ounce of hope that we could have, and eventually just realized, that this was not a way that she could survive.

Dr. Katinka (:

Vanessa, on Elle's journey you were obviously incredibly supportive and when you read her words, her love of you really shines through, and you were incredibly supportive. I feel like you did everything right. But Elle did...

Vanessa (:

Thank you

Dr. Katink (:

You are welcome. I'm proud of you.

Vanessa (:

Thank you.

Dr. Katinka (:

I cannot imagine your journey and your suffering and what you went through. Some of Elle's family members, however, we're not quite as supportive, is that, is that accurate?

Vanessa (:

It is, you know, and, and I think you know, I'm sure everyone has good intentions. I think it's incredibly difficult to understand what it is like to suffer in this way. You know, I hope that I came as close to understanding as I possibly could, but, you know, in Elle’s own words, I think if, unless you live it, right, and know what it's like to be in that body, even for one minute, let alone three and a half years, you know, I don't know that any of us can truly understand. I hope I understood enough to know that, that I couldn't possibly know what she was experiencing, but that I needed to respect and honor that. I think for others in her extended family you know, it's just so hard to wrap your head around, and so there was a lot of talk of, you know. Just try harder, and if you really wanted this pain to go away, it would. You know, and you'd be able to push through and, you know, just, just come to this barbecue. Or, you know, whatever it was that would be going on. And, you know, what I, what I often tell people who are trying to understand what a loved one is going through, particularly for this pain condition is, just imagine that you're being burned alive. Imagine some of the horrific videos that you may have seen of prisoners of war being captured and tortured and, in those moments, all you can wish for is that some is that it ends, right? And that somebody is at peace. And now imagine that for three and a half years, and a family member saying, you know, “could, could you perk up and just have a better attitude,” and it's impossible, right? You, you think of these people being burned alive, and you think that there is no possible way you could just perk up and smile and have a better attitude, or you know, will yourself to not feel that pain and I think it was a very difficult thing for people to understand and very difficult for Elle to try and convince people of her reality, and exhausting for her and I think ultimately, she felt she didn't, she had to conserve all of her energy toward breathing in and out every day, and really didn't have the energy to try and convince anybody of anything.

Dr. Katinka (:

Do you think Vanessa, that this lack of true understanding from some of her family members made her journey, more isolating and more difficult?

Vanessa (:

I do, unfortunately. And again, you know, I'm sure it wasn't intentional. But I think it did two things. One is I, so I'm a psychologist by training and, and I think we all, as humans, have this fundamental need to be heard and to be understood. And so, the absence of that I think was really difficult. Even to have people come to the point of saying, I understand that I can't possibly understand, right? You know, don't try and pretend that, you know, what this feels like because you can't, right. I couldn't, I could know that she was tortured, but I couldn't know what that physical sensation was like. I would have taken it from her, you know, as, as so many parents I'm sure would.I would have taken it from her in a heartbeat if I could. So, just the, you know, this denial of, I think this fundamental need to be heard and to be understood, or at least to be recognized that what she was going through was not something that most people could understand, but they could respect. So, I think that was very painful for her. And then I think there was an additional pain of, you know, really fighting with people if you will and arguing with people, you know, who would really push her in some very aggressive ways and some unhelpful ways. And so, the energy that it took for her, you know, to kind of steal herself for those discussions, when, again, she didn't have energy to spare you know, and the, the stress on her body. You know Dr. Katinka, you know, better than anyone and I know you'll speak to this you know, the impact that stress has on your physical wellbeing and, and so I think the stress from that could not have been helpful for her physical pain.

Dr. Katinka (:

Vanessa as the mother of a child who suffered so much and also as a psychologist, you have a unique viewpoint, I think, to give advice to others who love someone who is in this kind of pain. Do you have wisdom or advice about how to best support a person who is suffering like this?

Vanessa (:

It's a great question and the first thing that comes to mind for me, and I've, I have wrestled with this, you know, as you can imagine of, could I have done something more and, you know, what was my kind of higher purpose job as Elle's mom and have I failed in that role? All of these questions that go through your head and where I've landed and what I truly believe, is I think the best thing that anyone can do for a loved one who's suffering in this way is just hold them and I don't even mean physically hold them, because that may not be a reality depending on their pain and where their pain is, but to hold them emotionally and psychologically, and to just provide that degree of safety that you are there, that you understand, that you understand that you may not fully understand, but that you respect their existence and their experience, and to just kind of hold their, hold their emotions. Hold their soul. Create that space of safety and psychological comfort.You know, I think one of the most difficult things for someone who is caring for someone in pain is to reconcile that you cannot take away their physical pain. It's a horrible, it's a horrible thing to reckon with, right? That here's this person that you love, that you would give your life for, and the one thing you want to do is heal their pain and you can't. And I think that's an unfortunate reality is that we can't love their pain away. We can hopefully find incredible doctors like you, who can, who can actually heal their pain, but we can't love their pain away. But what we can do is love them, truly love them and create psychological and emotional safety if we can't heal their pain.

Dr. Katinka (:

I think that is sage and beautiful advice. Thank you so much for that answer.

Dr. Katinka (:

You and I met after Elle passed through The Burning Limb Foundation who was founded by Philip Robert because you guys actually started a fund for Elle's legacy in her name, and you have donated so much money to other patients who are suffering and I commend you for that. You have helped so many young women to find help. Why did you choose to keep fighting? I mean, you can so easily have walked away from this pain and have put it behind you, and yet you've become a great advocate for others in pain. So, what drove you to do that?

Vanessa (:

Oh my gosh! Good question. You know, I, until you just said it, I don't know that I was even aware that it was a conscious choice. I don't know that I've reflected on it. But, there's two things that come to mind, you know, one is, I always, you know, every day that Elle was living every day, since she's passed and every day that, that I will live, my primary motivation is to do right by Elle. That has always been my driving force. I want to do right by her. I want to know that I am doing what she wants me to do. I want to make her proud. Strange as that may sound, it is so important to me. And so, I think that's one of the reasons, you know, Elle was, and is such a warrior and such a fighter for the things that she believes in and I could not possibly honor her and do right by her. And at the same time, turn my back on this community of people who is in such dire need of your services. And I think the second thing is, you know, I just, I cannot bear the thought of other people, certainly young girls and young women suffering in the way that Elle suffered. It's just a horrific, it's a horrific disease, and I have so much respect for you, Dr. Katinka, for looking at, you know, looking at this disease in the eye every single day, and putting yourself, you know, in the thick of it. You know, dealing with all that this disease brings it, it cannot be easy and I just. I can't bear the thought of other people suffering in this way, if there's anything at all that I can do to help them because, I can't. It's hard for me to even hold the thought in my head of how much Elle suffered that I can't bear the thought of someone living through it in present time.

Dr. Katinka (:

Thank you for your kind words Vanessa. Elle was a fierce advocate for the disabled, because she did spend some of her last years in a wheelchair and finding she was bedridden. Can you talk to me a little bit? We discussed the other day, what exactly she was fighting for when we talk about being an advocate for the disabled? Yeah, she was, you know, I think for her so much of her existence was and is about truth and respect. And so, I think she was fighting for the disabled community, you know, to kind of speak their truth of what their existence is like and at the same time for others to treat the disabled community with the same respect that anybody would want and need to be treated with and so, you know, a combination of accessibility whatever your disability is, you know, menu restaurants having menus in braille, or you know, staff who can sign or, you know, ramps to get int. You know, I can't tell you how many sidewalks we would be on, right with these huge cracks or slopes or whatever, right. That were just impassable in a wheelchair. Or, you know, you pull up to a restaurant and there's an eight-inch step to get in, right? And all of these things that once you start seeing them, you can't unsee them. Because it's everywhere around us and you realize this world is not really designed for those with disabilities and so she was a huge advocate in that vein, and then there was this other vein of, and I hope I articulate this well. She wanted people with disabilities to be respected for who they were and who they are independent of the disability. So, you read, you know, some of her words at the beginning of this podcast. The last thing Elle would want is for someone to say what beautiful words from somebody in a wheelchair, right? She wouldn't want those qualifiers, right? If you think she was a good writer, it's because she was a good writer, Elle was exceptionally brilliant. Not because she was disabled. Not because she was in pain. Not because she was in a wheelchair. [It was] Because she was exceptionally brilliant, right? And you could put a period at the end of that sentence. And so, she didn't want the qualifiers of, you know gosh, that's great that you could do X, Y, Z from a wheelchair or without sight or without hearing. She just wanted people to be recognized for what they could do as humans and that was a huge cause that she took up.

Dr. Katinka (:

Vanessa, when I read your book, something that struck me with such great sadness was that every time in a moment when I realize that her pain was spreading, you know. It spread to the other leg, and it spread to her arm and her upper body and her back. In the first moment when there was a conscious realization that that is what was in fact happening, she turned to you and she said, “I’m sorry.” Her first concern was for you. Do you think that Elle experienced guilt about her condition and how it was impacting her family and loved ones?

Vanessa (:

I know she did. As much as I would, of course try and tell her, you know, Elle, the last thing you should be is sorry, right? And we'd hug and we'd cry. You know I never would want her to feel guilt or like a burden but I know that she did, we would talk about it. We would talk about it, you know, openly when she was coherent and she would talk about it pretty extensively. She had a series of ketamine treatments which we don't have to go down that rabbit hole, but when she would be kind of coming back into consciousness after being on ketamine for a while, it was like a truth serum, right? And she would just, she would just talk about everything and she would talk very openly and in quite a bit of detail about the guilt that she felt and feeling that she was a burden on me. So, I know that she did. There was a conversation that she and I had, not long before she died and we were talking about a treatment. IVIG treatment for auto-immune issues, which was very expensive and not covered by insurance and she was kind of ringing her hand saying, mom, you know, I see how hard you work. I know that you're working to the bone. This is, you know, a huge expense. Like, I just feel awful doing this. You're never going to be able to retire. And I looked at her and I said, “Elle, what do you think I'm going to do? Am I going to know, go retire in Hawaii? And you're going to be sitting next to me on the beach, in your hospital bed, you know, hooked up to an IV,” and we had a good laugh over it. She said, “okay, touché, you're right. I get it. You know, you're never going to be able to, you know, relax and enjoy life in that way. If I'm sick, it's just not what a mom can do.” But I know that she felt extraordinary guilt.

Dr. Katinka (:

If you are listening to this podcast and you are experiencing that guilt, one message that I want you to get today, if nothing else, is that you did not choose this. A common emotion that I have noticed all chronic pain patients share to a greater or lesser degree is guilt. Patients feel guilty for a variety of reasons. They often feel guilty because they feel they have so little, contributes to their relationships. Or they feel guilty because of the money that has to be spent through the years in an attempt to first find the diagnosis and then to find relief. They also feel guilty when their health affects their family members' lives and activities. They feel guilty when they can’t hug their children or they can’t make love to their spouse. They cannot work, and often feel that they're constant drain on their family's financial and emotional resources. But the thing about guilt is it truly doesn't fix anything. It only eats at you from the inside, like an asset and at night when everyone else is asleep, it lies to you. And it whispers to you that yes, truly, your family would be better off without you. It would be so insensitive of me, because I'm a person who has been healthy all my life to try to convince you that life is good, despite your pain and that butterflies and rainbows are to be found in your every day. You live in a hell that the likes of which only other people have walked or learned in your shoes can truly understand.

Life is not good every day and that's the truth. Frankly, some days it must be hard to remember why you need to go on and other days are just plain going to be horrible. Through the years however, I have come to know a few great truths. You're alive today because your job here on earth is not done. Plain and simple. If you truly could not contribute anything good anymore, I spiritually believe that it'd be time for you to go and that too will be all right in its great divine time. However, you are here,alive. If not living, breathing, if not thriving. You must figure out why you are still here. What do you have to give? What haven't you learned yet? What is left in life for you? And what did you have left to give others? Another truth is that most of you do not realize how much you are loved exactly the way you are.

Most people are not islands. When we laugh and we are loved in return, we are charged with a great responsibility. We form attachments and anchors here on earth, binding us irrevocably, our loved ones. We impact their lives and they impact ours. They need us and they learn from us and there we go, we take a piece of them with us so that they can never truly be whole like before again. You have to remember why your life matters. Broken as you are. You are here. If you can only kiss your grandchild on the cheek, once today you made his or her life better. You added to their experience on earth. If you could only watch a small part of a movie with your family tonight, you made your home warmer. If you could pet your dog just for a minute, you made its day. You’re unique and original and you cannot be replaced.

Dr. Katinka (:

Talk to me a little bit about the day that you lost her. If you are okay with that, I know it's very painful.

Vanessa (:

No, I appreciate it, you know, and I agree with what you said. I think every day that someone is here, they're here for a reason. If it's only just to kiss someone on the cheek or hold their hand for a moment. And, in Elle's hardest days, sometimes that's all we did. You know, she, it was hard for her to be around people when she was suffering. So when, sometimes it was just a kiss on the forehead and a squeeze of her hand and you know, and, and those moments carried me. And I, wrote in the book, you know, I had, I don't know if you would call it a premonition or a fear or what, but I had dreaded this idea that at some point Elle was going to say, I've done everything that I can do here and now, and it's time to go. And I had these kinds of images, right. That I would try and get out of my head. But the day that she passed she had been just in horrible shape. We had recently returned from a hospital stay. She had no longer been able to digest any food. They were talking about putting her on a feeding tube. We had just come home from the hospital. At this point she needed a catheter in order to relieve herself. She couldn't control her bladder on her own. Her heart was racing. Her blood pressure was uncontrollable. Her pain was, you know, all through her body. And she had these open lesions on her feet that had kind of scarred over. And the day before she passed, they had all reopened. And so, her feet were kind of wrapped in what looked like boxing gloves, right. So much gauze just to, to keep, to keep the blood in place. And so the day that she died, it was a Sunday and, sleep was not an easy thing for her to come by. And so, once she did fall asleep, which was usually kind of the early hours of the morning she would usually tend to sleep until about midday. So, my younger daughter and I went and ran some errands and I came home and I had texted her. We had a routine you know, she texted me when she got up, and I had texted her asking if she was up and she hadn't replied. And I just felt something was off and I went in her room to check on her and, and at first blush, it looked like she was in her bed, but I noticed her wheelchair was not by her bed. Which would have been impossible cause she couldn't go anywhere without her wheelchair. And I pulled her covers back and there were just kind of, you know, pillows on the bed under the blankets to make it look like she was there and her wheelchair wasn't anywhere to be found and I was just kind of, be fuddled and anxious all at the same time. And then I went into her bathroom and the lights were off and I saw this kind of vague silhouette of her wheelchair and I turned on the lights and that's when I found her and she had taken her life. And, I just held her and screamed obviously and remember thinking, oh my gosh, today's the day. Today's the day. You know, and then it was just this blur of, you know, me trying CPR, even though I knew that she had been gone for a while and then it was, it was useless. And paramedics and family coming over, right. And just this whole flurry of chaos as you can imagine. And I just, held her. I had asked the police and paramedics and everyone who is here to let me spend some time with her before they took her out of our home and they did. And, so I spent our last couple of minutes in her room with her, just kind of petting her head and singing some childhood lullabies to her that I used to sing and, you know, wishing her sweet dreams. You know, she was determined. And she wrote about it. She was determined to have her story told. She was determined to have her words on paper. She was determined to somehow explain this experience and this existence. And she was determined to be an advocate. Both for the disabled community, as well as the LGBTQ community. Really, as well as any community of people that are marginalized.

And I believe that she felt that, that she had done that, that she had put her words on paper. She knew that I would bring them to the world. She knew that I would continue her work and her advocacy.

Dr. Katinka (:

Vanessa, I think that you have expressed, and it's very important to you that people leave this podcast with a message of hope.

Vanessa (:

Very much so you know, Elle's story when I reflect on it, I mean there's pieces that are obviously extraordinarily painful, but ultimately hers is a story of hope. And, and our story together is a story of hope. What she shows me every day. What she teaches me every day. How she guides me every day is a story of hope. And, you know, I believe in her case and in our case, just this little, you know, world of the two of us, I do believe in her case that she had done everything she could do in her body. And you know, Dr. Katinka, I know you and I talked in the past about whether your treatment would have been helpful for her or not. And you know, I believe that her case was just intractable and that she really did come here and do what she needed to do in her physical body, and is continuing to do what she needs to do, not in that physical body. But I just want to be abundantly clear that does not mean that that's the path for others. I think there's so much incredible work that you do. I know there's research that you've done in the years since she's passed and new treatments and evolving treatments and, you know, things that weren’t available years ago that are available now. And so hers is a story of hope and I just want everyone to walk away with that, if you can hold on long enough and be loved fiercely enough. There is hope. And, you know, I think the other thing I would say is for those who have lost loved ones to this disease, or any other, or suicide for any other reason, there is still hope in life after that as well.

You know, it's a horrific experience for anybody who's lived through it, but our loved ones can still give us hope and so I just want to make sure that that comes through, because I know that that is so much what Elle believes.

Dr. Katinka (:

Thank you, Vanessa.

Dr. Katinka (:

Today. I'm welcoming. Amber. Amber is currently a patient of mine and she suffers from complex regional pain syndrome. Welcome, Amber!

Amber (:

Hi, thank you for having me.

Dr. Katinka (:

Amber, you are Canadian. You're from Calgary.

Amber (:

Yes.

Dr. Katinka (:

How long have you had CRPS?

Amber (:

I've had it for 11 years now.

Dr. Katinka (:

That is a long time to suffer. How old were you when you first got sick, Amber?

Amber(:

I was diagnosed at the age of 13.

Dr. Katinka (:

So that was a very vulnerable age and it must've been really hard to process at the time. Did you go on the internet and look up possible outcomes of your disease?

Amber(:

I didn't per se, but like my mom did a bunch of research and I think I was kind of more, you know, I didn't really want to know about it, because I was scared of the outcome and it was just kind of hard to understand being so young and being diagnosed, but I knew that it wasn't going to go away and that I might have this for the rest of my life.

Dr. Katinka (:

Do you remember feeling or experiencing hopelessness?

Amber (:

Yes, for sure. I've had many, many hopeless nights and feelings, but especially on July 12th, 2011 is when I reached my lowest and just lost all hope.

Dr. Katinka(:

Tell me a little bit about what your physical condition was at the time and your level of pain.

Amber (:

When I was first diagnosed, it was just in my right leg and then it slowly spread over to my left and I was in a wheelchair for probably six months, I would say. And like, my pain was eight or nine. And like I was taking tons of pain medications. I was barely sleeping, and my days were back and forth, like from the hospital. I couldn't go to school. Yeah, it was very, very dark.

Dr. Katinka (:

Tell me about that day, Amber.

Amber (:

Yeah, so It's crazy. I remember it like it just happened. So, throughout the day I just knew that, you know, like this was going to be it. And so, I kind of had a plan like the whole entire day. And so, then I waited until like my sister and my parents were in bed. And then I wrote a letter and then I got up, and looked at the kitchen just for my pain medication, because I knew I was on tons of strong ones that it would do the trick, but then all I could find was a bottle of Tylenol. And so, I took like the whole bottle and I just remember praying and just asking God, like, please, please take me because I was just, you know, I didn't want this to be my life. If this was how it was going to be. And like, the amazing thing is, is that my mom actually, before she went to bed, she like, had a feeling like that she should lock up like all of my pain medication, and all of my sleeping pills. And so, she did that. So that like, if she never did that, I don't think I would be here

Dr. Katinka (:

Amber, right before this happened. Tell me about what's going through your mind. Did you think about your family? Did you picture your mom finding you? Did any of that pop into your head?

Amber (:

No, like for me, I felt like I was, I was doing them a favor, I guess you would say. Cause I felt like I was a burden and that like, they would be better off if I wasn't there. Cause it's hard to watch. Like my mom and dad, you know, they go through a lot, too, like watching me in pain. And so, I felt like I was doing them a favor, but.

Dr. Katinka (:

And someone found the note, is that correct?

Amber (:

Yeah. It was my sister that found the note.

Dr. Katinka (:

They rushed you to the hospital.

Amber (:

Yeah. So, my mom she didn't really know like what to do. And so, she was very flustered. And so, she called like the children's hospital and like my chronic pain team and she asked, what like she should do. And so, they said, yeah, like bring her into the hospital. So, me and my mom went and she called my dad and he rushed there as well, like from work. And we were there all day. The whole day.

Dr. Katinka (:

So amber fast forward, 11 years later, that was your only suicide attempt. Is that correct?

Amber (:

Yeah, it was my only suicide attempt, but I've had many other, you know, plans in place. I just have never gone through with it. So, it's kind of been a journey of just having those thoughts and feelings, not knowing if that's how my story will end.

Dr. Katinka(:

You've tried many different things. All the standard medical treatments. I know you attended Boston's pain program for three weeks, and then you finally found our program. How many weeks are you into our program?

Amber(:

So, this is the end of my 12th week.

Dr. Katinka (:

Tell me how you doing.

Amber (:

Good, I actually woke up today for the first time in 11 years and I did not have any pain, and I thought I was dead cause I didn’t have any pain.

Dr. Katinka (:

Does that feel amazing?

Amber (:

Yeah. Yeah. It's so hard to understand and they wrapped my head around, but it feels amazing.

Dr. Katinka (:

And do you feel hope for your future?

(:

I do. I have just been trying to process everything and I think like when you're in it and you have chronic pain, having hope is scary or like sometimes then dying, but now it's like, I can't wait to live and it's like, I'm, I'm glad I'm here. And I've never like, used to be able to say that, but yeah, I want to be a mom. So now I can see me with kids and yeah, I see a future

(:

And you are married and your husband has been here supporting you through this? So, a whole new life is opening up for you. Is that fair to say?

Amber (:

Yes.

Dr. Katinka (:

Amber, if you could throw a rescue rope out to someone listening today, thinking the only way out is to end things, what would you say to them?

Amber (:

I would say that I've been there and I know how it feels and you're not alone in this process. It may seem like the only way out, but it isn't like the only way out there is hope. And, and you may feel bad like for your family or you feel like a burden, but you're not a burden and your family would be worse off if you weren't there. And I realized like that, there's only one you and there's, you were created for a purpose and like, you may not be able to see it now, but hold on. Cause there is hope.

Dr. Katinka (:

Thank you so much for being brave in telling your story. I wish our audience could see your face. You have so much joy on your face. You look so different from when you started. I would say that today our program is much more evolved than it was three years ago. We have added treatments. We're now able to help more sick people, more acute people than we could have three years ago. So, I don't know that I could have helped Elle three years ago, but I thought it is important to tell Elle’s story and to tell Amber’s story. The name of our clinic is The Spero Clinic and Spero means hope. Our motto is “Dum Spiro Spero”. And what that means in Latin is “While I breathe, I hope.” So, If you're listening to this today and you are breathing, you woke up another day, please hold on to that last flame of hope. Do not let it go out. Fight, fight, fight for your life because it's worth holding onto. Thank you for listening.

Kaylie (:

Thank you for listening today. We know this is sensitive content and can be difficult to hear for some. Again, we would like to reiterate that the national suicide prevention lifeline number is 800-273-8255. Thank you so much for joining us today. We are excited about every new person we are able to reach. It is our most sincere hope that our podcasts will bring hope to many. If you or someone you love is suffering from chronic pain, please don't lose hope. Visit our website at www.thesperoclinic.com for more information and stories of hope. That's www.thesperoclinic.com for more information and stories of hope.

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