S2 E1: Ripped Genes (Genetically Challenged)

Robin Alexix Powers

Robin Powers is Smart, Strong, Resilient, Selfless, Caring, Charismatic , Reliable, Inspiring, & purposeful. She is also a Clinical Consultant, volunteer Ambassador of Cheektowaga for Rare and Chronic Diseases, Author, illustrator, graduate, nonprofit cofounder and president, small business owner and Clinical and motivational Speaker. She is also a Motivational Pro-social leader in the Revolution of "Bringing the Hope back into the Hippocratic oath."

Social media and contact information: 

https://m.facebook.com/pg/RobinAlexixPowersB.S/posts/
Www.soapingforacure.company.site
Www.rareability.busniess.site
Email is powersr01@mail.buffalostate.edu
Robinpowers@rareability.org
Robinpowers@truthbombbeauty.co

Podcast Transcript:

Damaged Parents: [00:00:00] Welcome to the Relatively Damaged Podcast by Damaged Parents where pliable burdened, ripped gene kind of people come to learn maybe just, maybe we're all a little bit damaged. Someone once told me it's safe to assume 50% of the people I meet are struggling and feel wounded in some way. I would venture to say it's closer to 100%.

Every one of us is either currently struggling or has struggled with something that made us feel less than like we aren't good enough. We aren't capable. We are relatively damaged. And that's what we're here to talk about.

In my ongoing investigation of the damage self, I want to better understand how others view their own challenges. Maybe it's not so much about the damage. Maybe it's about our perception and how we deal with it. There is a deep commitment to becoming who we are meant to be. How do you do that? How do you find balance after a damaging experience?

My hero is the damaged person. The one who faces seemingly insurmountable odds to come out on the other side, whole. Those who stared directly into the face of adversity with unyielding persistence to discover their purpose. These are the people who inspire me to be more fully me. Not in spite of my trials, but because of them.

Let's hear from another hero. Today's topic includes sensitive material, which may not be appropriate for children. This podcast is provided for informational purposes only and is not intended as advice. The opinions expressed here were strictly those of the person who gave them.

  Today, we're going to talk with Robin Alexix Powers. She has many roles in her life, sibling daughter, granddaughter, mother, sister, cousin, half sister, and more. We'll talk about how she struggles with multiple genetic disorders. And how she is finding health and healing. Let's talk

Welcome back to Relatively Damaged by Damaged Parents. We've got Robin Alexix here today and she literally has ripped jeans both ways. Why don't you tell us about that?

Robin Alexix Powers: [00:02:11] Sure. Thank you. Um, I say ripped jeans, because I was brought up in poverty, so I said secondhand clothing and, uh, people would always make fun of me from my, you know, my ripped jeans, but then like you will, you know, I've got enough problems actually. So make fun of me all that you want to, but I really don't care because I also have ripped genetics, um, or bad genetics I've got a whole bunch of genetic, rare connective tissue diseases. And other rare diseases that are not connective tissue diseases. Some of it's not been mapped yet, but I'm going to argue probably most of it's genetic. So both ways.

Damaged Parents: [00:02:40] Yeah, that's tough stuff. Now. You're also just started Rare Ability.

Robin Alexix Powers: [00:02:46] Yeah.

Damaged Parents: [00:02:47] Why don't you tell the listeners what that's about?

Robin Alexix Powers: [00:02:49] Sure. That I, um, I started that with my, co-founder Debra Vick, and she is a stem educator and she also has rare diseases. And I met her at a conference for global genes in 2019. And I was just amazed that she was willing to talk to me and she felt the same way actually, oddly, she had like a table there and everything.

So then we, decided to together coin, um, you know, I started a nonprofit and I had already coined the term Rare Ability, which. My inherent unique ability, or other people's unique inheritability ability to do something, in their own special way that no one else does in that exact way that it's like their niche, their fields, I guess.

So we picked that name. and the idea of the nonprofit. Not just be for rare diseases. It's supposed to be inclusive, socially inclusive platform to help empower communities, to be inclusive and empower them from the classroom to the boardroom mindfully, empower them. And so she likes to, she likes mindfulness and I'm trying to get my best into the mindfulness practice.

So it's mindfully empowering, communities from the classroom to the boardroom.

So that's what we just started with.

Damaged Parents: [00:03:50] yeah. And you said something really interesting that you're trying to get into the mindfulness. Tell me a little bit about that struggle.

Robin Alexix Powers: [00:03:57] Yeah, it's hard for me to do just cause like, I feel like some people are kind of toxic about it. You know what I mean? Like toxic positivity and I'm not really down with that. I'd rather be realistic. To me, mindfulness is being aware of what's going on and even if it's bad, it just being okay with that and trying to get through that struggle, but realizing, when you're at fault and when you're not at fault, because I realized that commonly I'll put myself, on the line, I'll hold myself far too accountable.

It's me trying to rebalance the scales, I guess, and not just be so negative and against myself and realizing that it takes two people to take on to make the mess, I guess. But I can tell that more often I ended up getting victimized and that's probably just because I'm empathetic and victimizers. I spoken like, smell me out.

It's like, I have some type of, I don't know, um, empathy smell or something, but it's. I remember one person asked me, they're like, why do you like to be victimized so much? And I'm like, I don't like to be victimized. It's just easy to victimize a person. That's already been a victim.

Damaged Parents: [00:04:51] Almost like, it's what, you know, therefore

Robin Alexix Powers: [00:04:54] right. Yeah. It's just programmed almost. It's like, cause I'll automatically go into yeah. Protective, like, I'm sorry. You know, I didn't mean to, and then I'll just apologize. Apologize, apologize. Cause it's, pre-programmed in my brain for some reason. I think that if I apologize enough that they'll stop, which that never makes them stop.

The only thing that you can do is get away from them, which is why I've gotten away from at least some of them. There's a struggle with other parts going to mention, but you know, it's always, I feel like, overcoming it, like, that's like the it's part of the Odyssey of your life.

Cause they always say medical Odysseys, you know, you're in a medical diagnostic Odyssey, but I'm like, it doesn't really stop after the diagnosis anyways. And I kind of feel like it's the same thing with surviving, childhood slash adolescent slash you know, cause it was up until I was 28 that I didn't separate from my mother.

Um, and her toxic manipulative ways, you know, but, I feel like it's an ongoing struggle and an ongoing, way of, me trying to just, um, readjust the parameters and perfect my, you know, life and the best of circumstances, that I can, to allow my son to have the best life that he can. So at least I got him, you know, a therapist and stuff to help him deal and cope with traumas that the skeletons in my closet from my past, you know, which I can't help, but have some like everybody, but, you know, it's, there's a right way of going about it and there's a wrong way of going about it.

And I'm sure that I'm not doing it perfectly, but I know that at least I'm trying mindfully to, be conscious of what, what I could have used in the past is the way that I think about it. I'm like, what can I really use in the past? And then I try and be that person for other people. I love doing that actually.

But then for my son, you know, I'm trying to get him the services that I really could have used in the past. So I'm hoping that my damaged childhood, didn't it won't end up damaging his childhood, too badly.

Damaged Parents: [00:06:30] Yeah. it's hard, as a parent, I think sometimes

Robin Alexix Powers: [00:06:34] I feel like it's always hard,

Damaged Parents: [00:06:35] Yeah. Right.

Robin Alexix Powers: [00:06:36] I feel like no matter what, like they may seem like they have like the most perfect life, but I feel like everybody's gotta have something going on. You know, that they're not saying because some people just say they're happy as can be and you know, healthy as can be.

And I'm like, I don't know if they could really be the picture for most people and I feel like you're a majority of people must have some type of psychological damage, something from their childhood or from other parts of their life, cause I feel like nobody can have it a hundred percent perfect.

It's some of those odd statistical you know, anomalies, there must be a few people that have it. Very good. But I'm going to say most people probably have it more hard than they would like to admit.

Damaged Parents: [00:07:08] Yeah. Yeah. So now. I think you grew up with most of your genetic disorders and things like that. When, when did you start or when did you guys know there was a challenge and then how have you learned to cope?

Like maybe you could take us on that journey.

Robin Alexix Powers: [00:07:24] Yeah. I can tell you about that. So basically when I was a kid, I was very young. I, when I was about my son's seven right now, so when I was actually seven years old, I didn't even have the time to worry about why I was in pain and I, my first memories are actually of pain, but first I had to escape a very

risky and a traumatic childhood, where my dad thought that, he was a God in wanting to bring us to heaven, which, you know, it's actually sounds a lot more nice and peaceful. And when, when I say it that way, because I've had other things said about me, which are not like that at all, and he didn't know any better.

And that's why I do not hold them at fault in any regard. And I just miss him and wish that I could find him because I feel like he was kind of victimized in it because I just gave my mom sole legal custody. And she's actually very manipulative. And, you know, that's why he ended up changing his name. Probably.

I'm not sure exactly what they did cause he was in the military, but they like covered up how I could, find out anything about him or ever be able to talk to him again never know if he's alive or dead or anything. I don't blame him because I know that the likelihood of one of that, my mother's three children getting away from her was very slim.

Cause my mom was very, I don't know, very good at manipulating people and also. Making you stay loyal to her like forever and stuff. Cause I was lying all the way up until I was 28 for her two years after I was sexually assaulted by my stepdad. I continued to lie for her, continue to make excuses and I was about to give birth to a child.

So I was like, I will lie for you no more. And that's what I stopped the lying and then after I gave birth to my son, when he was about, I dunno, I think, a year and a little bit of change that's when that happened. Actually no he was younger. I was a year, sorry. It was in 2014. I tore my ACL and my mom wanted me to be able to have help because I had a torn ACL.

That's the main ligament in your knee, which allows you to be able to, you know, to move your knee, to ambulant your leg, to use your leg. Uh, it was fully torn and they didn't want to do surgery because Ehlers Danlos syndrome. They think that, I don't know if we do surgery on you, you're just going to explode and break and all these different ways, which is not really true.

They just have to be extra careful but they refused to do surgery. So they put me in a leg mobilizer and then just gave him the perfect opportunity to take advantage of the fact that I was more disabled than normal, even though you're 50% more likely to be abused if you are disabled. So that, and then the fact that my mother would not be home until many hours later, and then my son was sleeping in his crib.

So it's just makes me sad that he did that to your new mother, so that's one thing that I have prevalent problems forgiving. Like I can forgive my mother for out of fear saying, stay out of my marriage, because I was, she was like, oh, I don't want you to see the domestic violence. And I'm like, it's okay, mom, I've seen it the entire time.

I can get us help. I know how to get the help. Now. I was, when we were, when I was younger, you know, I didn't know of the best things to do, but now I know of, you know, where we can get good help, that won't be very disruptive and stuff and we'll help you guys get through this. And I just tried to stay out of my marriage and I was like, I can't help people that don't want to be helped,

 So then I just started to. Sorry back when going backwards a little bit. So when I was 13, I dislocated my knee and that's when I was like, well, where you always had this pain, which is, I guess nerve pain is bilateral carpal tunnel and tarsal tunnel syndrome. But when I dislocated my knee and then they brought me, my mom brought me to a doctor who my grandmother paid a whole bunch of money to basically tell me I'll grow out of it.

And there's nothing wrong with me. And I could tell that he was lying just by his tone. Um, and I was like, and I can tell that you're lying. I dunno why you're wrong, but I can tell that you're wrong just because you're lying and I will figure it out and I will find out. And then two years later I figured out Ehlers Danlos syndrome and I presented it to my primary.

And he said to me, it's too rare. You can't have that. So I said, I'll be back. I'm going to go to the geneticist next. And then the geneticists was Florida said that he was embarrassed, which was not really appropriate. And I felt really bad. And I explained to him do not be embarrassed just because I happened to know way too much about this, but I learned all this about this.

People look at me and they see a young looking, you know, female that looks like a child, probably in some kids or people I'm sorry, adult size. And you know, they think that there could be nothing wrong with this person because you look healthy and they don't realize how many disabilities are invisible and how many people may look like a child, but aren't, and how many people are children, but they are still sick because there's no cap hood.

And when you can get sick, it's like people think oh, you're too young to be so sick and be beautiful at the same time. It's like, you could be, zero days old and still be very sick. You know what I mean? You guys are going to go to the cancer ward and tell all the kids on chemotherapy that they aren't sick.

Cause that's ridiculous. But I sometimes take doctors back into that mindset because I would say you're too young to have this, or you're too young to have that. It's too rare to have that. And I'm like, that's not how it works guys. Like I know you guys went to school for this. I don't know why they taught you that way.

Unfortunately for the world, you can be very young and very sick. You know, you can be very healthy looking and still be very sick. So it's just very strange how I guess, damaged you can be just from, you know, how you were born and just the fact that society likes to put these, I dunno, blanket terms on things, you know, for its own comfort.

I call it societal comfort where they're like, oh, you're too, you know, young and beautiful to be sick or something. And I'm like, well, that sounds nice in theory, but that's not really the way that it is. So it was around I think when I was 17 and I had it on some of my documentation officially, and then after I gave birth to my son, then I finally had it officially documented in all my medical records that I had Ehlers Danlos syndrome.

And that's just one of the very many genetic anomalies that I have, which is oh so much fun. You know, my doctors are all like, oh, I don't want to have you on these pain medications because there's, I have three people on pain medications and you know, the government's all mad at me for it.

And I'm like, well, you could just defend it with the fact that I have all of these, genetic diseases that, caused me to be in pain. But also I'm trying to go to medical school so that I can come with gene therapy so that we don't have to use these medicines anymore. Cause I know they cause other people.

You know, addiction problems, which is not what I have, because I wish that was the answer only because while I know that must not be a great thing. I know that nobody wakes up thinking I want to be a drug addict. There's a treatment for it. There's no treatment for Ehlers Danlos syndrome. There's nothing even in the pipeline as a treatment.

So there's only things that they can use to cover up. The side effects of having the disease, but they can not treat the underlying mechanisms, which is very frustrating to me. So speaking with my doctor yesterday, and she's like, I wish I could have you on, you know, on non narcotic medications for your pain and that you could do things that are not, using narcotics to manage your pain.

And I'm like, I wish that too, but if we could only get me my home health aid we could possibly be going more in that direction. Cause then I would not be doing things that they approve seven years ago to help me not damage myself as much. But also you have to remember that I'm a single mom and I have no help.

And then she finally went back on what she was saying. Since you remembered which patients she was talking to you, the one that's trying to go to medical school and trying to find better answers for her, for everybody, because I feel like opiates, first of all, can't solve all types of pain cause they certainly don't do it.

You know, very much for nerve pain, I have to say. So I'm trying not to swear, but I guess I saw on your thing that you can swear, so they don't do jack shit. I mean, they do a little bit, they'll take the edge off of it, but only for so long when they take the edge off and then they do almost nothing.

That's why for me, Lyrica was a savior for me, but they're calling it the new, heroin, which is ridiculous because they named heroin that because they thought that it was going to save everybody from morphine and from the addictions with morphine. So I find that to be very hilarious and that sad kind of ha ha funny, way cause

wow. Did it fail at that? You know what I mean? It's twice as addictive because it crosses the blood-brain barrier twice as fast. Which makes it I dunno, probably twice as addictive, I would think. Although, I don't know, cause I've never been on heroin. I don't know. My doctor is like, I don't want to be putting another heroin addict on the streets.

I'm like, well, are you giving me heroin? She was like, no. And I'm like, you're putting me on the streets. And she's like, no. And I'm like, well, ergo, you're not putting another. Not that you've put any heroin addicts on the street. You can't do that. You know, the person has to make that choice themselves. It's not like you can, it's not like doctors are always over your shoulder going, you know, don't do this.

This is bad. Although that's kind of how my subconscious says, it's like, Robin, don't do this. You can't do that. That's bad. And I'm like, okay, I know that, but other people don't have that, but still, even without that, you can't, I feel like doctors put themselves too on the line and like the government's put them too on the line for it

in the end, they're just trying to do the best that they can to treat their patients. So their patients don't have to, suffer things that we can actually prevent the suffering of. And then other people decide to divert that and that's going to happen until the end of time because people just take advantage of things when they want to, you know what I mean?

It's where abuse comes from. It's just come from them exploiting, you know, and taking an inch and then you give an inch and then they take a marathon is what I'm saying right now, because of things that are going on custody court. I don't know. So I feel like I give it and she takes a marathon. And it's just like, man, I feel like I can't even give a centimeter anymore because otherwise it's just going to turn into three days until I see my son, which is, I was just trying to be generous, but my generosity, is kindness is going to be my killers.

What I say. Cause sometimes I've learned that you can be too kind of, I always used to say, you always have to have one flaw at least, and kindness, can't be the worst one that you can have. And I'm like, I don't know. It could be your undoing I've noticed. And that's why I've started to take back a little bit on that.

And that's why it's like, I, at one question, you know, in this thing that you do before. The podcast where you ask, what have you found the most helpful, you know, into, overcoming? And it's like, I feel like it's going to be a process forever. I don't feel like you can actually ever fully overcome it and just how we're always, students for the rest of our lives.

You know, I feel like I'm always going to be overcoming it for the rest of my life and learning new things about it. So always be teaching me and then I can always hopefully teach other people from what I've learned.

Damaged Parents: [00:16:19] So it sounds like what I hear you saying is not only are you going to continue to learn to manage your disabilities and the different genetic diseases  that you have. but yet on a nother level, the emotional journey of learning and managing and having boundaries that all of that is a

process.

Robin Alexix Powers: [00:16:38] Yeah. It's one big mess of a purpose. Yeah. I call it a beautiful disaster. I don't know. Yes. I feel like it's when the process, at least.

Damaged Parents: [00:16:45] Yeah.

Well, so. It seems like just from everything you're telling me that you are very much so in the middle of a struggle, a very real struggle, not just with your diseases, but also with what's happening with your son. And what are some of those emotions that come to you like that are difficult?

Or maybe depleting 

Robin Alexix Powers: [00:17:10] I feel like I failed my son. Yeah. I feel like I failed them because I feel like, well, you know, I should have known better, but I feel like I fell into all of the traps anyways, and I feel like I should have known better, but at the same time, I don't know at this, I had only just overcome it.

You know, when I was 28 after I had met his dad and that's just me overcoming my mother. And then I realized, oh my goodness, I fell into the trap, but at least I didn't choose to stay with him, you know? We, you know, have separated in some sense, but I feel like when you have a kid, you can't get a divorce like you do with a marriage or something.

There's no divorce from having a kid, unless you want to be unfair to that kid and keep them away from one of their parents. So as long as his father is behaving and is at least being neutral, you know, neutral, he doesn't have to be nice. He just has to be neutral. It's just not, you know, negatively, not just bad, you know?

Cause I always end up feeling guilty for what my son has to. That's why I got him a therapist. Cause I was like, well, I could at least give him a therapist that he can at least talk to people about how you feel. Cause like right now, I'm in contempt of court and he actually works during these times that I am denying him access to his son.

And he actually used to live right next door to me and I moved there so that he could have easier access to a son. So I was trying to make things easier for him. Silly me, trying to think, how could I make things easier for Jamie?

As hard as you try, you can never fix something a hundred percent.

So I feel very guilty and I cry a lot. And then I don't know. I'd bring myself back and I'm just like, well, at the end of the day, I know that I've been trying as hard as possible to make things fair. And that's when I realized yesterday and I was crying yesterday because I realized that I've been trying to make things so fair to the point where it's unfair to me,

I've decided I made a contempt of myself, my own court in the court of Robin. I'm in contempt of that one. There's any court that I should be in contempt of it's the one in fairness to myself, because I've completely discounted all fairness to myself by just trying to make his dad happy.

Which I realized will never happen. I can not ever bring him that, whatever he's looking for. You know what I mean? Cause I gave him an extra overnight when I'm in contempt of court. And then he exploited that and turned that into a two day thing and I'm like, wait, I never said okay to this. And he's like, we talked about this and I'm like, we may have talked about it.

I remember the conversation. I even have it recorded on my phone because I installed a voice recorder or a, like a phone call recorder for my insurance company, because I like to approve things and then take them away or say, well, we want another prior authorization and stuff. So I like to you know, send those calls to my friends and on Capitol health.

Cause I'm a very active, free lobbyist or advocate, they call it, but it's kind of like free lobbying, but you know, I don't mind doing it because I like to stand up for people that, don't know to stand up for themselves or don't stand up for themselves or cannot stand up for themselves.

So I sent them all of the footage of it, of the making me beg and plead for things that were already approved that I already had the letters of, so that, did that injustice. But then it ended up at least to have giving me proof of, me, giving an inch in him, just taking a marathon with it.

Cause he's like, well, if I do this favor for you. And so I had him take me to the dispensary and I paid him $10 and it took 30 minutes out of his time and, you know, I paid him for it, but then you decided to not bring my son home until Thursday evening. Even that was suppose to be Thursday morning. And I gave him this Wednesday, just out of the kindness of my heart.

It's not custody ordered or anything, but I thought maybe I'm being too selfish. You know, I'm being too gritty. And if I just give him this time, he'll feel better. Like he, has, I don't know more  of what he already has, which is the legal end of it because we're technically right now we have joint custody, but he has visitation because I'm the one that's always been there since the beginning.

I'm the one that's always been my son's primary caregiver. So he's like, they're punishing me. I'm like, no, they're just not going to punish me for doing nothing wrong. You know, they're not gonna have your mom take care of our son, just because you would like that better now or something, you know? Cause I've done nothing wrong to be a bad mother.

So that's why they're not punishing me. He just doesn't understand that they aren't punishing him. He thinks they're punishing him and I'm like, they're not punishing you. They just don't want to punish me. But now they're saying that I made contempt of court in the objective of the next court cases to punish Robin A. Powers .

With a fine or imprisonment. And I'm like, oh, that's interesting. And or imprisonment, I'm like, he's working. You know, I tell my lawyer then she's like, wow, I can't believe that he got away with doing this, petition. It was sort of signed by the court and everything, and he's working and I'm like, I guess they just don't ask, are you working during the time in which you're complaining of?

Cause if you are, then let's give you form B, which is change of circumstances. Cause that's just a different thing that you can do in custody court. And I just know way too much about it now. Like everything and it being, you know, that chill hill transfer. Then I, since I don't really have the money, I don't have the financial resources.

I have a, what I call intellectual currency where I'm like, well, I'm smart enough to figure it out. So I will figure it out because I have to figure it out the only other way. And then people get mad at me because I know a lot, but it's like, I had to learn all of this because it was no other option, you know?

And that's what people don't realize. I know that I know a lot and I know that's annoying cause it annoys me more than anybody, but it's because I had to learn it that way. And that's what our society put me in the position of, with the diagnostic, odyssey thing, the doctors would have no idea anymore.

They're just like, nah, we have no idea to go to medical school. After I've learned all of this, you know what I mean? Cause they're saying that I have Ehlers Danlos syndrome, but they're saying that there's something else that's malignant and rare and undiagnosable. So I'm like my goodness, you guys are gonna, give me the migraine about migraines because first of all, that doesn't make any sense.

You guys don't know. For fact that I have something else that's malignant and undiagnosable, that's rare. It might just be that my other chronic conditions are not being managed properly, which is making my blood work look like it's malignant side. You know what I mean? So what I tell doctors is I always tell them to think in terms of, if you have a chronic disease and you don't manage it, what does it become?

And then they always answer your malignant. And I'm like, yes. So this could just be that we have another chronic disease that we haven't figured out yet or the ones that we have are not being managed properly, which then makes them malignant, which is very silly that I have to reformat their brains to make them think this way.

But that's why it's going to be interesting becoming a doctor from the other end, because I know that I've been told that, patients make rubbish doctors and, I would think it would go both ways. Doctors would also make rubbish patients. Patients would make rubbish doctors. It would just be best if we could just have healthy people, empathize with sick people, but just doesn't work that way.

And that's why a lot of doctors are like, you have to go to medical school because you would just be so great at it. And you'd be able to empathize with patients, you know, and advocate for them, which, I've always dreamed of doing. And I'm like, well, you're doing an excellent job at it right now because most people can't even get this far to the point where they can realize that.

I don't know, I have intelligence and I do know a lot about my own body. They always get very uppity about that. They don't want to admit that patient could ever know more about just one particular subject, out of all of medicine than they do. But in the end, I feel like everybody knows their own body, the best who's the better authority on their body other than the person.

you know? So even if they don't even know that much about medicine, if she was asking the right questions, You'll probably get a lot of insight that you wouldn't have otherwise. So I don't know, I'm trying to develop a program with Berkeley where you would have an advocate, you know, follow the patient instead of with the doctors so that they could, you know, follow with the patient with chronic conditions.

And then somebody with chronic conditions could be more well managed. Well that will having, you know, an empathetic person that's kind of already been through all of the rungs that you have to jump through without any help. I would like to be that person that's on the other side to help them through it. You know, You hold their hand to grab their hand and help pull them to the other side.

Cause I feel like there's not enough of those people that will pull you to the other side. Like when you have damaged parents, You have been a damaged kid, which then damaged people and make more damaged people. So that's why I get nervous and I feel very guilty, but I know that I'm doing my very best to be as little damaged as I can be.

Although I'm saying you don't, while I've gotten over some of it, some of it's lasting and it takes a long time to try and get through and figure out that there's more wrong. Like you'll think that you're at the end and then you'll be like, oh, Nope, that's actually not really normal. And that's something else that's broken.

Well, I guess now we'll start working on that. Strange how many things you ended up learning about yourself and about the world when you're just trying to figure out, the best Odyssey, I guess, per se or path for yourself, even,

you just, you learn a lot, along the way.

If you're trying hard enough, I feel trying really hard. I feel like you'll learn a lot. Yeah.

Damaged Parents: [00:24:40] I mean, it seems to me that with your willingness to do so much research, if I were a doctor and knowing that there are so many things out there, there's no way a doctor, one doctor

Robin Alexix Powers: [00:24:52] Right. I would never expect them to be

Damaged Parents: [00:24:54] Yeah. So the, the idea that. I think it would be really neat if the perception could change.

It says it was kind of like I'm driving in a car and you've got the person in the passenger seat and

they're saying, Hey, watch out.

Robin Alexix Powers: [00:25:07] backseat driving.

Damaged Parents: [00:25:08] What if it's shifted? What if it's not backseat driving? What if it's copilot?

Robin Alexix Powers: [00:25:12] That's what I say, it's a buddy system.

It's a buddy system. You know what I'm say? I'm saying, you know, like the advocate, my ideas, you know, just to bring in someone else that would also be a doctor, but have a different type of standing that it could be like a buddy system. Like my one friend got sepsis, cause the doctor didn't wash his hands.

Well, I bet you that he meant to wash his hands, but he was probably thinking about silvery, many things that could've gone wrong with the surgery. And I wouldn't have been thinking about those things. I'm not the surgeon so I could've been like hey, I noticed that you forgot to wash your hands. You know, don't forget that. Cause we know that that's important, but I know that you must be thinking about a million things,

Cause that way it could come off as a buddy system thing. Like you're saying like I'm a, co-pilot like a backseat driver. That's not all bossy, but like, Hey, you must be thinking about like a million things right now, but you forgot to wash your hands and I don't fault you for that, but we just don't want her to end up with sepsis you know,

to my one friend that was died twice and that's where I actually came up with the idea.

And then also my advisor Roswell Park V, I don't know. May he rest in peace. I say every single day I miss you buddy. Cause I miss him so much. And he asked the doctors to listen to me and then I was his advocate, but they didn't listen to me. And I was gone for two weeks and then two weeks that I was gone, they gave him a non-full match for

a stem cell transplant and with his prior existing conditions of a past cancer and him being, you know, over the age of 65 and stuff, he needed a full match. And I was like, you guys will either end up killing him very painfully with graft versus host, or you may end up dying from the cancer. If you guys don't find a full match in time, but at least you won't die from graft versus host, which is very painful.

You know, so he would probably, I was like rather die from the less painful way from the cancer. And he was like, yes, listen to her. She's my advocate. I thought that was enough. It was not enough. I now have learned a little bit more. It's not enough because he sent me the saddest email ever. He's like, make sure that you continue to, talk about your efficacy and about how your idea of following it the other way, you know, backwards than being like a buddy system would be great because he was like, I wish so badly that you were here right now to help me and I wanted to be there, but then there was

the coronavirus happened like a week after I got back or whatever. And I wish that I had gone during that week, to at least in, up from, for pain management. So I know that he was not even given any pain medication at the end and I even have pain medication now, but like, you know, my doctors are all like, oh, I'm also nervous about it.

I'm like, you could just be mindful of what you're doing. You know, I'm one of three patients that you're treating. It's like, that's not even that many, you know what I mean And I wish that I could go to a pain management doctor, but you just have to write out one little letter that says, there's nobody else that does pain management that's in network.

So then I could go to an out of network doctor, but she has her medical or billing assistant or whatever that still hasn't written a letter. And I'm like, why don't you just have me write it up? And you can just sign it, you know? cause it's like, I know that she feels the same way. She also agrees with me that there's nobody else..

But yet she still wants me to get this doctor that I can't get without her just writing a little letter, just why I wish that they had this assistance backwards because that's one of the jobs that I would have the advocate do. they would help by, you know, coordinating the writing of the letter and they would have the doctor sign it and make sure that they agree with what they said and all that, and then make sure that that patient has that done and gets it into the insurance company for the patient.

Cause they could take over a lot of the extra medical billing that they added, without adding another position, which is why I feel bad. And I empathize for the doctors. So they had so much paperwork without anyone else to help them with it.

Which makes no sense, which is why, I guess the advocate idea that they would help them with that paperwork.

So I'm just hoping that, you know, people like it.

Damaged Parents: [00:28:19] When you're saying advocate, what I'm thinking of is like, the words that come up in my mind is like this peer specialist, someone who's been through that they can go on that same journey. And so what I'm trying to figure out, because it sounds like a fantastic and beautiful idea is where that funding would come from.

Robin Alexix Powers: [00:28:35] The execution of it of it. Yeah. The insurance company I would fight that they would be a provider other because through all of my journeys of my diagnostic Odysseys here, I had to basically learn how to become a medical biller. Cause her medical biller kinda is lame it's nothing that I just like about this person.

She just doesn't happen to know that much about medical billing. And I didn't know this is what she was paying for a medical billing. I don't think that my doctor gets to hire, who does her medical billings. I offered to do it for free, you know, and that's, a pretty good offer. And she goes, why would you ever do this?

I'm like, well, because if I'm being asked to do my own medical billing, I know that other patients are too, which means there's other people's suffering. And I just can't bear that thought because I know I became the volunteer ambassador for rare diseases and chronic diseases for the town of Cheektowaga. And they even, refer you to me, like if the town supervisor finds it to be necessary, and then I do help for free, you know, because I feel like there should be somebody there to help, cause there isn't, but that's, you know, my idea of it and basically what you said, like a peer specialist, but obviously I want to take on way more responsibility than one person's should, but it's because the doctor has been given so much that it's like impossible for them to remember it all, you know, it's not even their billers know it all.

And that's why it's like I know that you're not a pain management doctor. You just have to write one little itty bitty  letter, and then I could go to one or we could just continue this nonsense. And we're just continuing the nonsense for right now. I don't know.

Damaged Parents: [00:29:45] Well, and I think too, like if they can see the patient as a team member and not

the power dynamic, that's there. Cause

Robin Alexix Powers: [00:29:54] They love to feel like they're in power. It's like a power trip kind of thing I want to read this like little book or like a little calendar that's doctors saying the darndest things, because our practitioners say the darndest things. Cause it doesn't really matter what part of the continuum they are if they're in the clinical community.

Sometimes some people say to me, when I broke my arm, I remember last year they said to me, um, I didn't break your arm so I don't have to fix it. Well, I'm sorry. I didn't think that we became doctors to broke what we fixed because this comes into question. What are you doing in your, spare time?

What have you done in the past? What are you planning on doing in the future? Because this is very, yeah, I'm just very worried about your career here past, present, and future for being a doctor, have you just, came on the scene just to fix what you broke, and you're saying this in reference to pain management.

When literally my contract just says that I must go over it with the, uh, orthopedic, cause she's not an orthopedic which I understand that, you know, before I come to her and then it's just part of the contract. So I was just telling him, well, you know, I just have to make sure that I follow the contract, or dot my I's cross my T's, you know?

So if you can just say no, but instead he's like, no, because I didn't break your arm and it's like, you should have just said, no, you know what I mean? But you just didn't understand that. So I brought that up to him later. We can't just say that to patients because I've had one doctor also say to me, if you get a cold, you'll die.

And I'm like, you don't say that. You say, if you get a cold, let us know, we'll bring you into the hospital. And then we will do our best to take the best of care of you. And things should work out. Things should be fine. You know what I mean? We will do our very best. You shouldn't say if you get a cold or you'll die, it's not even accurate.

I mean, they don't know if you're going to, they have no idea. They're not God. if  there is a God they're not the God and they feel this power complex is, surgeon, God complex, even just the doctors do and like the assistants do.

And cause I know that they all just say things to me like that one of her assistants who is like a medical assistant, so pretty low on the I don't know, power totem pole, but she's like, you can't get your medication filled until you piss in this cup properly. And I've problems with peeing since my bladder exploded, I gave birth to my son.

I don't know if they gave me a C-section my bladder exploded. Lovely. So it just doesn't function very well anymore. So my doctor was like, no, I'm not really worried about that. I'm just doing this for the protocols sake, just to make sure that I've done what the insurance wants me to do and all that. So you can get a feel, just come back on Monday.

And I'm like, can you just give me a catheter though? Cause I'm like, I've been given so much water that I have to be so bad that I feel like I'm exploded. It's already exploded in the past. And she was like, but don't count on me to give you a catheter. And I'm like, no, like please. So obviously, I don't know.

I want the pee out of me and it's like, go ahead, test it all that you guys want to, but get it out of me. And she's like, don't count on me to give you the catheter and I'm like, no, cause that's a worst answer. Then you can't get your pain meds filled because if I can't pee my bladder  could really explode again. Cause hollow organ exploding.

It's just a thing. That comes with the Ehlers Danlos syndrome package. Your hollow organs can explode at any moment. So since already happened before I get nervous about it happening again, but at least it wasn't Halloween at the time it was very full. So least a very full bladder did not explode.

And then I gave him, I took my Adderall, so I know that's a diuretic. So then it allowed me to pee. I don't know. It's very complicated how all these medicines, it's like treating side effects for symptoms and symptoms for side effects. It's just all very interesting. And from my perspective, because I think that I'm having all this fun with all these medications and I'm like, I know that to other people that don't need these medications, they're probably fun.

But to me, since I need them, I'm not having any fun. I'm like, when do I have the fun? And I'm so guilty of I'm like, cause I'm not having any fun at all. I'm like a miserable, honestly, it's just interesting. Cause like they think of them as like happy, fun time or like party medications.

 Other post students or whatever. When I was an undergraduate, they were like, you have a pharmacy in there and I'm like well, I mean, I guess I have most of the basic medications that we could need, you know, to save somebody's life. So I kind of, but it's actually just what I need for myself.

So no, I don't have a pharmacy in here. Unfortunately it looks like a pharmacy, but that's how many conditions I have. And this is the best way that we have right now. You know, I'm just hoping for gene therapies. Yes. Gene therapies that don't go on the end of, you know, like designer babies. Cause I'm worried about that because if we go in editing, you know, like before the baby's born, same, they could just decide to give the baby

blue eyes instead of brown eyes. And that is just ridiculous because who cares if the brown or blue or brown and blue, just as long as they function in my mind, I actually would love to have brown and blue eyes. That'd be very pretty, I think. So I'm just worried that the genetically modified organisms of people will be a problem.

But if we're just very careful, it won't be, you know, so I'm hoping for good gene therapies,

Damaged Parents: [00:33:58] yeah. Yeah. I'd be afraid of triggering

Robin Alexix Powers: [00:34:01] Yeah. Other stuff.

Damaged Parents: [00:34:02] Yeah.

Something that

we don't know.

Robin Alexix Powers: [00:34:04] That's what I'm worried about. That's what I brought up because I was like, if we go in and we edit all this stuff, we've no idea with the quote unquote junk DNA. Cause it's, nothing's junk. we just don't know what it does. They gave it the stupid name, junk DNA.

It's just more like, we don't know what it does. DNA, if it could just be unknown DNA. I don't know. But no, they named it junk DNA. Just how they named outer space. Isn't empty, but there is stuff around me and I'm waving my arms in the air. I know what I'm hitting lots of particles, but my arm can just go through the particles.

So they thought of it as empty. Nothing there it's just silly thinking. In retrospect it always looks different. hindsight is always better, but still we could think about things more mindfully even before we do them and learn from our mistakes in the past, because otherwise history will always repeat itself.

 One thing that gets me depressed is if I look in the past in history, cause I took social movements and history at the same time, not a good idea. Don't take them both together because then you'll just get really mad and you'll see that commonly social movements don't actually end up achieving all of their goal.

And then there's still problems left in the system. So right now we're all living in a society that was not even designed for the people that live in it. It was designed for white lawyers that were loyal to the British crown and that's what they actually designed it for. Those are the people that were allowed to like write up our constitution.

And none of those people ever existed living in our society. So I say we scrap it all and we start over, but that's just me. That's just my own perspective.

I just think that we can all do better.

Damaged Parents: [00:35:17] Yeah.

Now you have got all these challenges and struggles on a daily basis. It seems like you've got such a great positive attitude. because I hear your frustration and I see the smile on your face

Robin Alexix Powers: [00:35:30] It's just I'm trying to stay realistic about it. Yeah.

Damaged Parents: [00:35:33] Yeah. Like I see, I see both and I think both can exist. I'm trying to figure out how do you get to a point where both can exist or where you're okay knowing that yes, I can be frustrated and I can still have joy?

Robin Alexix Powers: [00:35:44] I get to that point just because I feel like that's the only way that I can do this. I feel like that's the only way that I can do this as if I am mindful of the frustration, but then I also am mindful of the things that I can not take for granted because I've seen myself lose so many things that I wasn't mindful of at the time to be grateful of.

So I think that maybe that's part of what helped me gain that perspective of, you know, I should really be mindful and grateful for what I have, because I know that it could all be gone in an instant because when I was younger, we lived in the back of a truck, not even a trailer, not even a trailer. And we had the back of a truck, a 24 Wheeler, not even the front end of it.

Very ridiculous. And CPS left us there, which shame on you, CPS, I'm still mad at you guys. I don't know. They're always mad at me when I'm always like cause they always come back to harass me and I'm like, you guys are bothering me as an adult. Now when you guys left me as a child and I begged them to take us and I said, at least take my sisters because they're younger than me and I'm the oldest.

So it's my duty to, you know, I don't know to be the last one. And that's just some type of mindset. That's very common. I guess, statistically but I don't know. Why would I think that apparently I was just putting my life at less value, I guess, for my brother and sisters, but I just, I'm sorry, sister and sisters, my sister's transitioning.

So I always forget, I always say it wrong and I feel like I'm going to do that forever, but it's because they don't communicate with me very often. So I just haven't had enough of a chance to develop that thing in my mind where I set that habit because before they went by a different pronoun and that's why I always

mess it up for them. And I'm sorry. And I love them very much just in case I ever hear this because I mean, she, but it's just a mistake that I make because I just learned it like a few months ago, you know?

Damaged Parents: [00:37:08] Yeah. Kudos to you for trying.

Robin Alexix Powers: [00:37:10] yeah,

Damaged Parents: [00:37:11] yeah,

Robin Alexix Powers: [00:37:11] I wish I had a rubber band on my wrist or something just to remind myself, but yeah, I'm trying my best.

Damaged Parents: [00:37:15] So it just maybe is something that you learned the cope.

Robin Alexix Powers: [00:37:19] Cause I've tried to go to therapists and stuff to teach me better ways to learn boundaries, but I didn't even learn what the term boundary until somebody else told me, oh, you're having problems with boundaries. And it was just like a friend, not a therapist.

So I've tried to go to trauma counseling and they were always just like, well, you're just doing so great on your own. We're just going to leave you on your own. And I feel like that's just the way they're pushing me off. So this is the only way that I've found on my own in order to balance it. I don't know if there's a better way there probably is.

So I always feel like there's always better, you know, you can always achieve great, but you can always achieve more if you keep on trying is how I feel and it will never be perfect. It will always be a singularity of trying to approach that perfectness forever. And we'll never quite get there, but the closer that we get, the better off that we are as how I feel.

So I don't know I feel like I have to try my hardest because I was gifted at least intellectually. I was not gifted with my bodies malfunctions. At least I was gifted with possibly making a difference in that because oddly enough, Berkeley has wanted me and they would love to do this program, this advocacy program that I've been thinking of, they're actually really interested in it.

It's just interesting. She can be because I'm just like, you guys don't really know that much about me yet, but you guys would love to do this program with me. I mean, that's awesome. It's just, but they want it. So Berkeley is, I never thought that Berkeley would want me.

I always thought to myself, why would Berkeley want me? I don't know. They want me, so I just never thought that I would be in a place in my life where I could think medical school. That's a real possibility, but it's a real possibility. It's just crazy. Or lawyer. People have to also tell me, I make a great lawyer.

I know that I'm probably make good at both, but if only my body could just function properly and then I could really do. Either, but I think I'm going to have to go doctor just to make my body function better, just so that I can hopefully then be more successful in helping others.

You know what I mean? So it just, it's something that I could never decide. What do I want to do when I grow up? So I never got to think of that. I had to think of what do I have to do when I grow up? What will actually help me survive longer and help other people than survive longer I had never thought, what do I want to do though when I grew up?

I've always thought of, I mean, the last month I've been thinking about that. What would I have wanted to do? Probably forensic chemistry, probably something still in the sciences. I'm not certain though. So I never really got to think of it.

Damaged Parents: [00:39:17] Yeah.

And it sounds like finally you're in a place to where it's okay. That you can think about, oh my gosh, I need boundaries. Oh my gosh, what do I want? What's good. What is good and healthy for me? And that's a really cool place to be.

Robin Alexix Powers: [00:39:32] It is really cool place to be in. It's just a new place to be in. I literally just got here a few weeks ago. I finally realized because when I realized that giving him that extra night and stuff wasn't enough to make him happy. And then he was just exploiting that I'm like, you know what? I am just in contempt of myself because I'm doing everything that I can against myself and I'm not okay with that.

I need to take back charge of my own life and I need to set boundaries for myself and explain, and I even told them, I was like, can you just try and be more mindful of my feelings? So I've been trying very hard to be mindful of your feelings. Cause I'm like I'm also have done something to make him feel this way.

I don't think I did anything. I think that his family convinced him that I was making him out to be, you know what, he's not. And he just decided to go to custody court again. And I just don't know how he's going to defend himself. And my son already knows that he may end up in contempt of court and I will not save as dad's, but if he ends up in contempt of court, I won't put him in contempt of court.

But if the court puts him there, I'm not saving him out because like once he lost custody and I give it back, stupidest move of my life. But I was just trying to be helpful, be trying to be hopeful if I gave it back, that he would then understand that it's a privilege and not a right. It's a very high honor.

I think it's a high honor that my son thinks that I am the best parent for him, that he wants to be with me. It's just so amazing that some, you know, I always wish to the universe, please bring me somebody that always loved me forever. And it happened. It's just, you know, amazing than it did, but I just feel so bad that he has to endure all this nonsense from his dad and from the court.

But hopefully eventually, his dad will run out of arguments and the court would be the sick of listening. I'm hoping this will be the last run. So I'm going to ask the court. You know, does this help my son this is not helping him in any way. This court is designed for my son. It's not designed to put me in contempt of court and put me in possible jail time or whatever nonsense they're talking about.

I'm like, this is just nonsense. But if there was no such thing as nonsense, I would be poor, you know, I would have no sense at all is what I say. So I'd be totally poor. I'd be really poor without nonsense. I'm rich in nonsense.

Damaged Parents: [00:41:19] What I think I heard in your conversation when you spoke about your son where you speckled him in was that he gets to have his relationship with his dad. and

because his relationship hopefully will be very different than what your relationship was like.

Right. And

Robin Alexix Powers: [00:41:35] Yes, exactly. that's what I'm trying very hard to ensure. I'm like, no matter what happens. You know, , I made him promise actually at the beginning, when I found out that I was pregnant before I told him, I said, if I ended up becoming pregnant, would you stick around or would you not?

And he said that he would. So that's when I decided to let him know. Cause otherwise I was just going to go have my son without his knowledge, because I wanted him to have a dad that would be there. Yes or no. Or even if they transitioned just a parents that would be there. Yes or no. And yeah. Just decide to, I don't know, disappeared because of their own fancy, It's just not cool to me because my dad was taken from me and then my mother just disappeared at her own fancy because she's the one that took my dad and then it wasn't, convenient for her. So she just left. It's like interesting. I don't know. I just wish the court could have seen the right perspective at the time that I had been old enough, to defend my dad, but I wasn't old enough to know any better.

So I'm just trying to do my best for him so that he doesn't end up as damaged as me. And hopefully he can get help with the therapist.

I got him, because he knows that I'm trying my best for him. Cause that's why care if he hears it. Cause he knows that I'm trying my best. Cause I just like to be honest

Damaged Parents: [00:42:33] Yeah. therapists rock. okay. So we were at that point in the podcast, so three tips or tools they could just pop into your mind for listeners, anybody listening to the podcast that they could do. So just three tips or tools.

Robin Alexix Powers: [00:42:48] Yeah. I would say, honestly, if other people are involved, think about this in a way of how would you want to be treated if that was you, even though it's hard to do that because some people may not have had the childhood that I had. So they wouldn't think of that. But still think, if there's a child involved, like it is in my circumstances, if you were the child, what would you want?

So I try and give him a stake in his future, even though the courts never do. And I wish that they would, but they'd try and pretend like even an eight year old or a seven year old or whatever, a five-year-old they can't talk and they can't get perspective when most of them can. By the age of three, most of them can utter full sentences and can, give accounts and they would advantage have no reason to not give the true perspective. So give the child to stay, if the child is, if there's a child involved, try and, make sure that you're fair to yourself and that you set boundaries for yourself, but that you're also mindful of other people.

But don't forget about yourself because I forgot about myself, make sure that you're mindful of yourself and remember that. You shouldn't hold yourself too guilty. Cause it's good to hold yourself accountable, but you can hold yourself too accountable is what I've learned. Don't hold yourself so accountable to the point where it would just be harmful.

You know what I mean? Hold yourself accountable, but allow yourself the knowledge of knowing that we are just people and we're not perfect. And that's okay because that's part of what makes humanity beautiful. The fact that we're not perfect, but we can always strive to achieve better. So try and give yourself a little bit more credit than you do, be mindful about other people and also be mindful of yourself.

Damaged Parents: [00:44:13] I love that. Thank you so much for coming on the show, Robin. I'm so glad I got to have you on

Robin Alexix Powers: [00:44:18] I'm so very grateful. Thank you so very much.

Damaged Parents: [00:44:22] Thank you for listening to this week's episode of Relatively Damaged by Damaged Parents. We really enjoyed talking to Robin about how she has learned to advocate for herself. We especially liked when she talked about advocating for others, because it's the right thing to do. To unite with other damage to people connect with us on Instagram. Look for damaged parents. We'll be here next week still relatively damaged see you then