brooke jill group homesFINAL
7:48PM Jan 23, 2021
So yeah, so we've got Brooke, Alicia here. And this is kind of a continuation of a podcast that we did, I believe it was in June discussing, we both have daughters that have Tuberous sclerosis complex, which is a genetic condition that causes benign tumors to grow on different organs of the body. And Brooke also has TSC. And one of the issues with tsp issues, or one of the things you should always it's very variable. So people are impacted differently. And as you well know, I have I have offspring with TSC. So each, each of those, each of my offspring are affected differently. And so we're going to talk a little bit about our daughters, and, you know, the situation that they some of the challenges that they've they've had personally and trying to get them to, you know, to have a life to have a quality of life and what, you know, each of each of us have had different, you know, different presentations. But in TSC Some things are, you know, universal. So anyway, so here I have Brooke and Brooke, as I said, TSC mom, she's also a hairstylist, and she is an advocate for she's worked with the TS Alliance, doing a lot of advocacy for them. And she also is a top notch, I don't know whether you call yourself marketer salesperson for thrive ,she lives it, uses this thrive supplement, and they have really had an impact on her quality of life. So we're going to talk about all that. So I'm going to kick it over to Brooke, I think I had a little intro here. Oh, I was gonna say, yeah, we've done our best to advocate and support our daughters, we've had to make tough decisions, lean on mental health services to keep them safe, preserve our own safety. And sometimes these choices are sorely inadequate. Sometimes our resources run out before we can get our loved ones into a situation where they can take advantage of supports and services and start to forge their own lives. Sometimes group homes are a good option, and ideally should be a good option for more. But again, we are dependent, or they're dependent on funding and disconnects between providers and often not able to implement and implement enough surrounding support services that would enable individuals to be more successful learn from the group home living situation and move into a less restrictive environment. So, you know, I think my point is that I think they can work. I think there's a lot of challenges. So Brooke, why don't you go ahead and give me a little bit of your background and talk about your experience.
Okay, I know this is part two. So if you watch part one, you can hear a lot. I mean, we could reshare that somewhere. So speaking on that I was diagnosed at 18 with TSC. And I had kidney tumors, basically was dealing with a lot of kidney stones, urinary tract infections, that type of thing at the age of like, 17 ish, probably a little bit after my hormones got to use, you know, used to my body, and were like, Hey, we're not gonna let you do life anymore. I was a cheerleader I skater, singer traveling singing group for a Christian. It was called Youth for Christ, stuff like that. I was very, very involved in a lot of things. So for me to be told at 18 I be in the wheelchair by the age of 30 was very detrimental to my mental health. Being told I could never have children. If I did, my body would fight the fetus off. So I just gave up and like, honestly, I was in Darvocet in the basement, and like watch real world and just said My mind was just junk. Because I just like might as well live vicariously through someone else. Since I can't leave my basement. Moving on, I ended up getting pregnant have a daughter with Tuberous sclerosis complex your directory, I was told that basically, you should have an abortion because your body will fight the fetus off anyways. But for me, I chose not to everybody has a different view on that. And that's fine. But that's something I wanted to have to live with. And then having her she was good for about the first four months. And you know, it's just, it's a whole long story when you have to see and I could break down every single little bit of our lives. But I then was pregnant for my son after she started seizing and went to Canada for infantile spasms. I mean, if you I know we've all been through a different differently. We're on a different boat, Jill has different stories with her children that I'll have with rain. But listen, that boat was sinking, I didn't have a way out diastolic was every night we had 13 different medications, which leads lead to brain surgery. And I'm like, well, maybe the doctors were right. Maybe I you know, I didn't know what I was getting into. I was not affected that way. It was my kidney. So I didn't have that loss of functional life. And then I wasn't able to do things and never had anyone ever told me that I couldn't do anything until 18. But when someone tells you can't do something for me, it changed my mind. It changed our mindset to autoplay while I can have dogs and travel and whatever happens happens. But I was young, I wasn't in the mindset. You know, my kids, my friends were in college and I was like, jealous of them because I couldn't just go out and drink and have fun I would drink and then end up with antibiotics for 30 days so I couldn't like live that you know, let's get it out of your system like because I was trying to just live I had people asking me Are you gonna die like they didn't really understand to disclose this. Nobody really got it but nobody also wanted do include you because they're also scared to ask you. And it's this whole type of loneliness that you go through when you're diagnosed and your child's diagnosed. And it could be parents that have gone through different things, if you have cancer or different things, it's just a really lonely place. Because nobody knows what to say. And I don't blame anybody, I wouldn't have known what to say, what it was just a very solitude place that you get yourself in, and then, you know, you go on through life, and then you realize you have to if you're lost, you plug in, and then you start digging into advocacy. And I didn't want to be a part of it, I didn't want to be part of the TS Alliance, the beginning, I didn't want to know what my life was going to look like, I was scared, because there are so many different variables, like Jill said, and I was just in fear of like, what's coming, I don't want to know what's coming, I'm more afraid to know what's coming, because this is bad enough, you know. So you just kind of go through life. And then you're like, wait, I got told I had four and a half centimeter tumors that I had to go on dialysis, or that my body was going to shut down, I'm like, crap, they're right, I'm going to be in a wheelchair with age of 30. So I said, I have to dig in, I have to do this drug trial, I have to move forward. And then I just jumped, I jumped with everything in with all fear involved, but I knew that I couldn't be an effective parent on dialysis, or having radiation, when that wouldn't even help the tuber sclerosis, you know, go away, it was just kind of come back. So moving on, I just became a huge advocate, I paid for myself to go down there because I wanted this so bad. And then I got involved with adult regional coordinators, I'm a regional have five states now. And I'm glad because I feel like I can help my child if I'm not plugged in. But I also know more of the resources and stuff that's just kind of like the basis on where where I ended up and how I got involved in the GSE community and advocating so
Yeah, and I think that's perfect. And I you know, every time I hear you explain, that seems like to me, you need to get to that place where you really start to own it yourself, and you realize that nobody's going to save you, even if you're a parent, you know, the system is set up, is not going to support you, they're not going to they'll people will help you. And there's wonderful people along the way, but you're running the show, you know, and and that I think, is really a good example of that once you started to own it, and just, you know, kind of face it. Everything shifted, even though I know it's been a huge struggle. And it I think our lives are, you know, often very challenging, but there's also really wonderful things too. So, right, right, I wanted to ask to have you talk a little bit about brain now I, my daughter right now is in a group home, and we just we she was in a adult foster care, now it was shared living situation, which is a little bit less restrictive. And that's where at the time that we placed her that we thought that she might have the chance to do well, and kind of what we found out was that it feels like and I know you'll be able to relate to this, you're in this race, you're trying to give your kid as many skills or as much support. So when they if they do go on to a more independent situation, they're able to grasp those supports. And I think what you know, in a lot of ways, it's been a learning experience, because in some ways her skills are up here, and she had other skills down here. And ultimately, you get kind of pushed down a little bit when you in order to kind of work within the systems. And the opportunities start to diminish a little bit. And you know, her mental health kind of, because that wasn't really addressed, if you don't address the full package of the human being that we have, you know, their mental health, their physical health, their spiritual, their emotional health, all of that. And one thing's really out of balance, and they're in a stressful situation, it's easy for me to look back and see why things were were hard for her. And so ultimately, she ended up in a group home in between having these mental health crisis over this summer, which really was TSC, the TAND, which any of you watching is the behavioral component that is very frequent with a TST diagnosis and is is basically covers the entire mental health spectrum anyways, they didn't really know how to how to address her issues. So ultimately, she's she ended up in a group home. And, you know, I think along the way, what has stood out to me is the amazing people that are involved, and that really do care. And they're working within a broken system and they know it and you know, I that takes a lot of courage and and then as a parent, it's it's learning to be the squeaky wheel and learning who to talk to and just kind of hanging on loosely, because you are going to lose some control. And that's one thing I'll mention, I want to give Brooke a chance to talk about your experience. You had some issues where your daughter was having some I don't know if you wanted to talk about that, but I'm going to bounce it back to you.
Yeah, so I met Joe randomly. And I learned so much from someone I never met in my entire life. But she has three kids with us and I guess I really started to realize in 2018 when I was struggling before This whole journey or what I was talking about the nutritional health and stuff, I was struggling to be president, I was struggling to stay ahead of the TSC. If that's even possible. I feel like at least if I'm not running behind it, I'm running with it now. But when I did that I got green and SSA because we were struggling with she was consistently inconsistent like what you're saying with Mary Ellen, you know, as far as like she's here, some, some places, but also here, and so you have to figure out how to connect that, but also like, know what she needs. And when I filled out the SSA stuff, me having TSC also, I hate tests, I hate packets. I hate all of that stuff, because I have to relive everything from you know, everything a neuro psych evaluation, I'm like, do we have to, and there's stuff that I feel like as parents that we push aside so we don't have to relive it. I'm realizing some things now like having PTSD from things that I went through. I didn't realize till now till I'm put in situations and I'm like, crap, where's that coming from? You know, so some A lot of it was just, I don't want to deal with it. I didn't want to rehash it. And we tell somebody, so I took control, so I could just control it, then you're limited on what your resources are going to be. So we went to like therapy three days a week, she had a personal therapy, a family counselor than our brother. We were in this like whole group for 18 months. And they helped me fill out the paper, they were very helpful with like getting her social security and all that stuff. When I started a plug in, but looking back two and a half years later, after I started that journey, redoing the assessments, getting another neuro psych, you know, all of this stuff, I had to realize that it wasn't enough for them to just look at rain and say she needs help, they had to see everything on paper. Thankfully, we I used to work for a group home because when rain was younger, and I'm like, Okay, this might be my daughter's life sometime. And I want to know what it's like inside. I was like, I want to put
myself like that's pretty admirable that you did that because I don't
even realize why I did it. But I knew the lady and actually that's where rain goes a day have now and she got approved for 6000 hours through the state. Finally, a teacher and adaptive school learning a grant that you get a john Patterson grant, like I had to dig I had to know other mothers, I had to see people that were searching for what I was searching, but it took two years to get that care. And I felt like in all the meantime my son's like, I tried to get him into a mentoring thing. And he was getting ignored. And you know, it's hard when you have a child that like, and I want to talk about this when you have a child that can is capable of doing mostly everything themselves. My son is a genius he gets maybe sports out pandemic gets always self sufficient, knows how to brush his teeth, do his hair, he shows up comes downstairs, he's ready to go like, honestly, it's like he's a plant, you need to water on feet on like we're good. But it's so weird because I was so worried to not affect his life so badly that I wasn't asking him how he felt. And then he just feels like so neglected that I just don't even say like, I know you're doing your work. He's like, Yeah, but it would be nice. We had this talk today, he's like, it'd be nice for you just to ask me. And I get that because I'm a very independent oldest of a child. And nobody has to ask me if I need help, because I figure it out myself. However, it would still be nice to know that you're like, hey, do you need something. So moving on to what you said, we ended up with really bad behaviors, put cameras in our home to protect ourselves, she was making up rumors that weren't real. I had to literally tell people I didn't want to tell just to protect ourselves things that I couldn't imagine your own child saying ever about you or about people in your home. But I had the cops basically said you have to protect yourself. So she ended up in a psych ward in June. And that was the most debilitating day of my entire life more than brain surgery. More than anything, but I knew to help her I had to let her go. And I guess where I'm coming of this. If you want a village you need to be the village to. So I realized that I can't do this alone. No one can do anything alone. I can't be an amazing hairdresser by myself. I can't be an amazing entrepreneur by myself. I can't be an amazing advocate by myself. I needed to let go of that control that I had to hold on to because I felt like when you have to see you have nothing left helping you anymore. Like everything that's happening to my tumors, my kidneys, my body, I have no control over. But I had control over that. And for some reason like that I could control that area, that environment. It was out of control because I was trying to do it alone and I don't have the resources by myself to be able to help my child succeed in life. Now she's out day half our days a week living her best life. She does go to school two days we have worked it out through this pandemic transition like she can go to school a couple of days and then there three days, but she's living her best life. She's happier. And you know what, I've had a lot of go I've had a lot of other people like raise my child not really but I've had to realize like I deserve a life too. And that took a long time and I know Joel is kind of there to like, what part of advocating like a mother you know they say advocate a mother but also like what point is it that you can do better for your child's life if you are not taking all the pressure for you just you like it is not up to you to control I don't know children what I'm
trying to say mean it's almost like you have to live in their head. It's such an Yeah.
And you have to know I have to know that rain wants to get up and go to her day job and eat lunch there and have taco day. And Friday was all this day in that, that I'm just meeting her where she's at. I'm eating town where he's at right now and whatever they want. Because you know what, I want to live my best life too. And I can't live my best life if I'm empty all the time. Because I'm making myself feel like everything is my problem, or everything is my Yes, I'm going to advocate but I also want to let my child have their best quality of life, too. It's not fair not to.
Absolutely, I know exactly what you mean. And I think that I got to the point where I was doing so much like I would wake up in the morning, I had these binders next to my bed with all their IEP stuff in it, I like lived a breathe it. And it, it became it became just too much. And I mean, I couldn't work I couldn't, I couldn't, I was just so immersed in their care that I couldn't, you know, see that to them, it might not be ideal either, just like what you're saying. And so I've tried to kind of make it make something work for us in our family where, you know, I can keep my other two offspring out of group homes, and we can kind of have more structure seen. And I can have, I can add, that's when I started, you know, I started doing the podcast, and considered a full time employment, you know, outside of the home and something held me back. And I now know that it would have been a disaster, but maybe it wouldn't have ultimately I think I would have been really having a hard time working in a system and making recommendations that I didn't necessarily agree with ideal. And that would I feel like it would have, I would have damaged my soul. And I felt like I'd done enough enough damage throughout the course of my life to my soul, that I just didn't think I could do it at that point. So I tried to we're trying, we're trying to make it work. And we've got, it's like a part time job. And we've got I've got my son, my other son, he goes to a program through his school, and my daughter, my older did my daughter with TSC. That's 22, I was able to get her to go to a community, she went to community college and because of her seizures, I drove her. And she now is doing remote learning through finishing her degree. And you know, it's like this piecemeal patchwork. But back to the point of what Brooke said about taking care of myself and having something some kind of life that I wasn't just this like, this fierce advocate parent, and I think we lose, you know, and I think when I thought about going back to work away from the home, I couldn't separate my psyche, from my offspring. And I think that sounds like really unhealthy psychological, you could probably label it all kinds of things, and therapists would have a heyday with it. But it was a process that I had to go through. I don't think that if somebody told me you need to make a cut, you need to break away from your kids a little bit that I would have I would have resented it. I had to kind of come to that, that awareness myself. And and it was hard to it's hard to make the decision that I could not care for my my oldest daughter in the home and let my other children have an opportunity at quality of life in that setting. Because the demands of one offspring can often be just like Brooke was saying, you know, you're you're always putting out brushfires, you're ignoring one kid or you're just like giving them like hi in the hallway, and it starts to catch up. And so you're balancing the needs of these human beings. And you've really got to watch out for going down the rabbit hole and getting trapped in too much. Too much giving I guess, would be the, the terminology. And I guess to bounce it back to you, Brooke, at what point would you consider I mean, I think we all kind of like even now I'm always watching my son. And I'm like, we have to do a lot of work around the house to I don't want to say accommodate, but to make it a livable situation. So in some ways, you're like running, you're running your own group home. And I cannot thank you enough for saying that. It takes a village, you know, as a parent, you know, whatever it could be, oh, man, I'm such a hero. I did all this or whatever. No, I had help all the way. I mean, I think that's one of the things I learned through this process is, like you said, I do not I cannot do it alone. I need people I need resources I need, you know, and I think if I had more money, I might have done things differently. But I didn't. And that's one thing that I think that is hard for parents that have kids with special needs, his resources, you know, these programs if you want anything extra that's not covered or to try some alternative therapy or whatever that's on you. And
so that's another and see, and that's why I didn't do for a long time. Yeah, because what you do as a TFC parent or special needs parent, I'm not saying either way you go into the survivor mode, and I've literally lived off 20 bucks a week because I've made it work but I've been exhausted and I'm not saying this isn't even about money, but what you're saying like you could have done on our things or you could have worked on I couldn't work more than what I was working. And right now I'm at the point where it's weird, we finally have all the help we need at this time and what you're saying about the whole group home. But I only work three days a week. But I started to work smart, not hard. I can work 312 12 hours for two days and eight hours for one and make what I was making in the six days. But it's taken me 19 years of being a hairdresser, to finally say, after everyone got shut down with a pandemic, we were off three months. I'm like, you know what everybody can do with their root touch ups. And if they don't want to book ahead and plan ahead, that's our problem. And I'm not being mean. But I had to start like realizing like, yeah, setting up a boundary. If I want to take that day to go help with my daughter's group home, I can do that. If I want to go do motivational Monday, or if I want to do at my son's VIP concert, I can do that. I wanted to make a light that I could not spread myself thin anymore. And honestly, it was getting to the point where I agree with you at work. I was in this panic mode. What's happening? what's coming up next Am I gonna have to dodge this client in the middle of a highlight? You know, those? Those were things like I was telling the resources, people, I don't think I can even work anymore because I'm so scared to be at work for the safety of my child. So when you're asking, you know, now what point do you consider group home? At any point where anyone safety is at risk? That's when I consider it. If you would have asked me before, I remember crying to myself in my car singing song of rescue me by Lauren Daigle, which I really liked to find peace in that because rescue me, I will send an army for you. If you read the words, I needed an army, I needed someone to step up and say we got you broke, we're here we're gonna hold on to you. We're not gonna let you fall. And whatever that army looks like for you, whatever your beliefs are. That's, that's your opinion. But you need an army. I am a single mom. I mean, I have a supportive boyfriend. But he has no children on his own. So he's walked into a hot mess. I mean, it's a mess. He's had cinnamon rolls, thrown at him remotes, TVs busted. I mean, we can't have a lot of nice things. Because honestly, if it's like having a child, you have to put like, protective stuff on the cupboards. That's basically what your life becomes. And it does become a group home. And then everyone's living on eggshells. My son wouldn't come downstairs for months at a time. I mean, we all feared for our lives. And I know that this transition of you know, the pandemic has been hard on some. But for me, it's woken me up. Because I had to realize the pigs in my parlor. And what I was allowing will continue and doing the same thing over and over is insanity. And so when that happened to rain, as hard as it was, it was honestly a blessing, because it was able to pave the way for me to get her help. And for me to say, Brooke, it's at the point where you have to realize like if it's not safe, and she's not in good hands, and let's say epidiolex stops working or her body gets used to the new medication. I'm not saying it's out of the picture. Do I want to do it? No. But is it better for her to have 24 hour care and safety vision? And for me to know that I'm not playing damage control to try to save whatever just happened? Because I can't be here. 24 seven in her face? Yes, it is. Is it? Is it possible for me to send her a group home? Because that's better for her life? Yes. She already told me she loves it so much. She's moving in with one individual. She loves her. And it's her grandma. Okay, cool. Like, if that makes you happier. And that's where I want you. Right? Because who am I to say that that just because it's not what I want for her life doesn't mean that's not what she needs. And so when I started to look at that, and I, my son's going through a different transition to with like, gender and stuff. And I'm just meeting town where he's at, you know, like, I'm not educated, but I'm plugging in and learning because I need to know, to where to meet my child. And if I agree with it or not, if that's what makes my son happy right now, whatever. But I wanted to wear jenko jeans and a choker and join a skater group and loved Abra Levine. So who am I to say that he can't be happy right now, doing whatever he wants, you know, it's it, there's a difference between enabling and advocating. And I've really learned a lot of that having different things happen in my life, I will advocate for you and support you. And if I'm your biggest fan good, I won't enable the bad behavior anymore. I'm not going to allow it to continue to my control. If I know it's out of hand. I need to recognize that and move move the app forward. So
yeah, the enabling is a good point. I think there's there's nothing we do that's exactly what we do as parents you get caught up because enabling instead of instead of advocated
Yeah, and there is a difference.
There really is.
You're guilty of it for sure. Oh,
absolutely. Me too. And I think that that was the point with my daughter where I and all the all of them wherever you've got to step away and for me that was doing the podcast and talking about it for a little bit from a distance and connecting with people outside my my circles and talking to you know, people that might have other resources and whatnot, but it is it is through and I totally lost my train of thought you brought up something really good and I can't remember now exactly what you said.
Well, if you want to think for a second I was going to tell you something about so I was talking to this lady, I don't really know She's out of Canada. And she does this group for people that called you grow grow up for domestic violence survivors. And we're all in some kind of trauma, like I said, on our own, whether it's having a special needs child and advocating, whether it's going through a traumatizing relationship, a narcissistic, like, whatever, you deal with that after effects because of you got to relearn your life. But she asked me one day, she's like, Brooke, I hear you do all this stuff for everybody else. But what do you do? What is your purpose that makes you wake up and like, Joe, you having the podcast is your purpose, you're reaching so many lives, whether you feel like it might be one or two or 10 that day, you're advocating for people so they don't get lost, like you had to get lost to find yourself, you know. And when you start looking at your purpose, and you realize, like, you know, what, I do have a purpose, there is more to me than just an advocating mom, there is more to me than just damage control. There's more to me than just fixing things after they're broke. Like you really start to be able to help other people. And I'm really thankful for you, because you've really helped me step out of that with competence.
So Oh, my goodness, thank you so much. And, and same for you. I remember, I saw you on, I think it was some group and you had a video, you were doing a video and I was like, Wow, she is just like, she's just like putting it out there telling it like it is appreciated that
so many friends because of it, but it's what I
don't need. I think as a team, you know, we're just we don't have a lot of and you and I talked about this, we don't have a lot of time to BS around things, you know, I mean, we you find your purpose, you find your passion. And I don't have time, I don't want to say I don't have time for small talk. But if something is negative, or is I feel like it's going to take energy that I need elsewhere, I really have learned to avoid that or just, you know, not in an unhealthy way, but to sidestep it. And the thing that I wanted to talk about was, you know, human rights, I think that that's an issue as that we're dealing with, with my daughter where, you know, where do we step in, I mean, she's her own guardian. And that's been that's been an issue. And in some ways, I can't go back and fix it. And I also, I think it's like significant to be that I've held on to that kind of hope that in some way, she's going to be able to, at some point, step into that into that role. It's made things very complicated in a lot of situations, because, you know, she's making, she's the one that I've cut out of a lot of a lot of the care, because she is her own guardian. But fortunately, in this group home setting, the the manager, the house manager is phenomenal. And we you know, she clicks with me, and I'm able to interact with her in a way where we can kind of guide things, but there's a lot of things that they, you know, they cannot restrict, like you can at home, you know, like I had, we have locks on our cabinets, we had people walking in the house and telling me people told me that was a human rights violation. And I was like, well, would you like the opposite? You know, it's like, we're keeping our children all alive and safe. And yet, we're forced in some ways into these roles, where we are kind of stepping on their, you know, human rights. And so I think in the group home situation, they really are cognizant of that. And even even in those situations, it It happens because the the people, our loved ones, whoever it is, are not able to obviously advocate for themselves, like my daughter, but I think that, yeah, anyways, it can get really complicated with the human rights issue. And I think I can observe the the situation in the group home all the time, and watching how everybody interacts, and looking at the big picture, because if I wanted to, like nitpick every little thing, or I think a lot of the situations that we're told are terrible or to avoid, are also because our perception might be, you know, we might have a bias or something, you know, like, Oh, my God, my daughter's in a group home. That's just the most the worst thing in the world, when in reality, you know, I see the potential there. If you're, if you're in a good place where your offspring is able to, you know, like I said, hook in, then and you're able to work with the team, then I say, and you keep moving forward. I think what I'm seeing now is there's this, okay, at the same time that they move out, because we need them to move, you know, we can't run our lives without them living with us. Their their care is taken over by someone else. So they're the TSC care is incredibly complicated. And that's been a challenge because bunches of medicines have been added, you know, therapies have been changed. And I think that that has a, an influence on their long term health, physical mental health, if they're on medic, multiple medications that aren't being, you know, supervised in a way to see how it's impacting them, long term or overall at all. They're really set up to become sicker and and cognitively suffer. And I'm starting to see that a little bit. You know, I think, if I had was going to step in, I'd say, let's evaluate the mess. Let's do this. But there's only so much you can do. So you're kind of, you're forced to, I don't want to say look away, but you're forced to accept. And I think that we have these extremes, like, Oh, my God, I would never do that are these black and white ideas of life. And I think TSC Talks case, man, and you know, so many situations really forced you to like, look at a lot of gray, and real kind of evaluate on the human beings that you're working with. And just holding on to that presumption of competence, I think has been important to me. You know, knowing that, that in there, there is some really smart young lady that is looking to bloom, and, you know, how do we let that happen? So that's my rant on that. Let's talk about something else. Let's talk about how you are able to do self care and the thrive piece and or if you had any thoughts on what I just said,
Well, I have had people No, I totally agree with that. And I guess, I mean, kind of like what you said, until you're at a place where you completely lost everything. Do you ever really know what you truly need to keep going? And I couldn't have went at the trajectory that I was going and be surviving, right? Because there's only so many times you can cry in fetal position, watching criminalise. There's only so many times that you can lock yourself in your bedroom and cry. But at the same time, it's still happening around you whether it changes, you know, I told people before, even with COVID, like, after COVID, we still have TSC, we still have to fight, right. So and I know a lot of parents, listening will understand this, but our lives aren't over. We still have to advocate, I still have to stay at home all day and wait for the mailman to bring the medication. It's not. I mean, it's not ever over, you know. So, yeah. And I feel like people think like, it's a quick fix, but neither is your life. So when I started on this journey, I was a quick fixer. I thought just doing this going to the gym a couple of times doing this a couple times, I'd be better, right? We all think that new medication, not that you don't need it, but it helps. But you also have to do the work, you have to do the work and show up for yourself. You have to work out they've told me even at the clinic, they're like, what are you doing for you? And I was like nothing. I was drinking a pot of coffee a day a ton of Mountain Dew and then wondered why my adrenal glands were a mess, and I couldn't function and coffee made me go to bed. And I'm like, Okay, I'm not doing my any self dessert, like any service while I'm trying to get my kidneys better. But I'm filling myself up all this stuff. And I'm not like a workout guru or perfect person. But I had to really look in the mirror and think if I really want to feel better, I have to like really feel better, and actually, like, take care of myself at a premium level. So I started to do that. I started to go to counseling. And when someone's like, what do you do? It's not just one thing. It's a lot of things. I constantly filling my mind, I no longer have cable, I don't watch the news. The world is ending at this point. And I have no clue what's going on. Unless someone tells me which someone always does tell me either in the salon, where I live, or whatever. So there's no sense of me wasting all day watching the news on that, because someone's just gonna tell me anyways, even if I don't ask them. And so that's where I'm at with that. I don't need to fill my mind with that. I join around people, entrepreneurs, I just joined a DNI group to grow the business that I want. I want to do more traveling weddings, for hair, you make really good money, you get to see a beautiful wedding day. I have a friend that goes with me and we've we've literally go everywhere to do traveling weddings. So what do I do for myself, I just show up for myself. I do my three steps in the morning. I drink a ton of water. I mean, if I have a pop, it's like a sip. And it's just really to make my son upset because he loves Diet Pepsi and I'll drink like this much out of it and walk them off. Just let him know he needs to turn in his homework. So I do that kind of but I don't really even like it or care. I don't know I do Reiki sessions. Because I've learned the mind body and soul go all together. So like if I don't want to go back on the 10 medications that I was on because I slowly with doctors went off respectively in time. Because I'm a seasonal depression person I went through seasons I actually am staring right now at this happy light that I ordered. Here. You sit in front of this happy light for like a half hour and it's supposed to increase your mood. It has like natural lights to it that helps you like just be happy I live in Ohio. It's depressing because it's dark and gloomy if you can't see. So I just I do a lot of things. I guess. I do my drive in the morning. I google calendar blocked out my life now because if not, it's too overwhelming. And let's face it, I'm at an age where if I cough I pee. So I got to figure out how to keep myself on task because if I don't, I don't know my tsp brain cannot handle all this without a structured schedule. So I literally put wake up and thrive. Listen to pie Get ready for work. I give myself everything I'm doing a time. Wow. That's impressive. Yeah, but it's taken a long time, two and a half years, probably of realizing a schedule for myself and it gets changed all the time, my whole month is planned out, however, it's going to change, but I'm going to know where everybody's gonna be when it changes. And that makes me have comfort, and that's what I can control. So about the whole news thing, I'm just focusing, like I told my son, I realized this is a huge, you know, issue in the monumental world. However, like focus on what you can control, I can't control that. It's sad for me, I've advocated on the hill so many times, however, I can control my heart, the way I respond, my reactions, how I deal with daily life, so I'm really working on that, because that's hard for me.
I agree. Totally. That's a slideshow,
I'm probably too much, but that's what you get with me because I can't ever like dim it down,
Like I say, 10 things, I have to talk about all 10 of them. And then I get sidetracked on to be like, you don't
have a place in your life. You can't just like ignore what's actually helped you and what's helped me is 10 different things because people think it's just like, one thing is gonna fix it. And it's not, you know,
a quick fix society. You know, I think we we want that we are we want that. So guess what
you'll see is not a quick fix. And it's here for till we find a cure. So like, I've learned to not that it's not going to happen overnight. Nothing is
No, I mean, yeah, I would concur. I think as some of you know, Ronnie, it's been really, really important to me. Because it, I think it's it combines one activity, it's a meditation, you know, it's physical. And it's also like, a time when I am by myself, you know, there's no, I can think whatever I want, I can take that time in my head and process things, or I can listen, you know, just, it's that time is there. And that's been crucially important. And again, like Brooke says, There's 10 things you know, and I did, I got a tapered off the segments that I was put on, I think I had a personal mental health crisis, complete psychotic break, during the time that I was kids were younger, and I was going through divorce, and there was just a lot of a lot of stuff going on. And I hadn't dealt with a lot of the traumas that had come up over the time that you know, that we were in the middle of them. So it was like this Boomerang thing. And I just kind of fell to the, to the ground. And, you know, I had I was in recovery programs and whatnot. And through that runnings been really helpful. And through that process, I started to learn more about our medical system. And I'm not going to bash it, but I am going to be pretty honest about what happened is, a lot of times, you're you know, you're in this recovery program, you're given more medications to avoid, you know, alcohol or whatever. And I think that we're starting to learn more about what Brooks said, you know, it's, it's the mind body spirit, everything works together. And we've in our society, we've had all these separate things, you know, we've got the mental health, got the physical, we've got the spiritual we've got. So you know, again, it was a situation like a, like, growth is erratic. So anyways, I was on all these meds, and really, really sick physically, like, headed towards krones, I ran this marathon and not to be gross, but I had to run into the woods like eight times, because I was having gastro intestinal issues. So at that point, I knew that I had to do something. And I also knew that there was no one doctor or no one person I could go to. And truthfully, I didn't feel really, like very many people would understand my life. So I kind of did it on my own, but with a lot of support, you know, kind of going along and learning who, who is really smart, who's out there, and what are their life's Like, who do I respect? Who do I want to model myself after and it's not one person, it's pieces, you know, and it's and it's really kind of working in the self forgiveness and all that stuff. But again, it was the running and cannabis, you know, I've talked a lot about that and CBD. And I'm kind of a psycho not to and a lot of ways I will like right now the supplements I've kind of started exploring supplements. And it's one thing I really want to start talking a little bit more about on our weekly lives is these these kind of alternative supplements and like C 60. I'm not even going to explain what it is but it's an it really interesting I don't know whether to call it a supplement c 60. And these detox D like magnesium and I think a lot of the things that Brooke utilizes that are in thrive these I you know, I'm not, I don't do thrive, but I do implement like whole different nutritional and supplemental sources to improve my my psyche, my physical health and kind of doing a lot of research and reading. And these spiritual connections always been really important to me and I think, really good, glad to have a practice where I feel like I can connect to something beyond myself and with other people too. So I don't know I still am a mess. A lot of days. I think that I need to remind people that I'm not any kind of Guru in any way. But I will say that
the physical activity, I think that a lot of us in our society, we were forced, we're in jobs where we're sitting around a lot, the human body wasn't meant to sit for sit as much as we do. And we can push ourselves, I think we can really where we've made it this far, I think people are afraid, they're afraid to push themselves, they're afraid to try something new. Like, for instance, vitamin D, I saw somewhere in some country or some state, they've now banned it, because people were taking adulterated sources or whatever. I don't know, I don't know about that. But it also is an immune booster. And, you know, it won't cure COVID. But it will help your immune system and help you tolerate that, if you if you happen to have it. And there's lots of things like that, that we aren't told that our system is really focused on Oregon based and specialists, which is why THC gets really tricky, because it's an Oregon, you know, you're dealing with tumors in multiple organs, and you're seeing multiple specialists, and you're the one that's connecting it, you know, the dots you as the the person that has it, or if you're working with your offspring, you know, no one's over it, no one's looking at the show. And I can give you a example. Like, during the time that I was immersed in my children's care, I got some blood test results, and I don't think I was supposed to see. And I remember looking at them, and they're like triglycerides, and their numbers were just horrible. And I remember I just broke down a crime, like, how do I even start to fix this? How do I fit? I mean, there's so many pieces of it, there's, I mean, what could it be? What could be causing it? Is it the tumors? Is it? Is it the medications? Is it because they're not physically active? Is it netic thing? So you're like this detective, and but no one was, no one was going to tell me that no one was going to read those blood test results to me. And a lot of ways that's when I started really researching cannabinoid medicine and alternative methods. And I was like, oh, Holy sh, T, I can't just sit here and look at these results. And so I started asking the doctors, and they, you know, I, they would tell him, I'd say, Well, how, what happens if this interacts with this? Or how is this long term, they didn't have the answers, you know, and they give me what they knew, but they knew very in within their focused area, and they're certainly not going to because a liability really give you any kind of advice or anything. And I don't think they know, I don't think they know enough about outside of their their areas. And to me, that's a huge problem. But, you know, Brooke, and I make the best of it. I think that's what as a TFC parent, we can't single handedly fix the system, we can't do everything. So we have to compromise we have to take, we have to be able to accept maybe not ideal, and I think that's true, more than just, you know, of course, TSC, I think our systems are really kind of made to oppress us and marginalize us, we are human beings with amazing variability. And we're all different. And we, we need to just remember that, that we have some power to and I think as time goes on, and you're talking with these doctors, and you've learned over the years, and you're still kind of having to bend the knee over and over again, to the medical system, to the mental health system, and hash out your trauma along with your kids trauma, and to get the help that you need. And to really give somebody a full picture of what's going on, so they can help you or your kid is exhausting. And yeah,
I don't think it's ever possible to really give a full picture.
I mean, stepping you
at, I that's why when someone says what do you do, I do a lot of things because there's so much trauma. You don't even recognize I've done a Bible study this year about like, how you are in the womb, and how it affects you as a person if your parent was an alcoholic, or if your father was an abuser or the mother, like I've looked at, like traits that carry on from just being in the womb like I go back. Yeah, we had to do like a timeline. And there was stuff that I probably didn't really want my grandma to hear. But I wanted to get it out because it needs to be dealt with. So I'm not saying that I was, you know, and some people were afraid to do it. And I'm like, Listen, I don't want to rehash this over and over and over here and make myself feel bad. And what I'm trying to get at is what you're saying is we normalize, we normalize misery. Yeah. And people can't just normalize What if you don't have to feel that crappy. One of you actually can feel like you're giving to society being a part of life and not just Netflix singing it all day because you have no purpose. Like, whatever that means for you, whether it's Jill CBD or my you know, venture with thrive, whatever quality of life can get you out of your house and being a person again, and actually like being a part of your life. Do that. If it's riding your bike, if it's running, if it's going to lunch with a friend to get you up and ready and out. Do something Because of the saddest thing for me to see so many people and not just in our community, but I have a lot of clients and they're afraid of them their own blessings, like they're blocking their own blessings. They're afraid of their own work. They're afraid of what? You know if I can, I don't know, I just see so many people just trapped in fear away from like, what you're saying they're so they lived in such fear. And like, we lived in fear, too. But we know that the fear is lonely. Yeah. And a fear makes you I mean, I had to be calm. Last year, I did the three months where I did no drinking, no chick fil a. Every month, I did something new broke, don't overspend cool. I got COVID. So I was home for a week and a half. So that helped, you know, like, there was things that I had to do, but I had to really discipline myself and to not keep being those traits. And doing that over and over. And thinking that I'm going to feel different. So I just feel bad watching people not think that there's not a way that you can feel better. Because if you want to stay on meds, stay on meds, but also give yourself counseling, self help, read podcast, listen to positive things like, do something that moves you that you look forward to, or you will literally lose all effort into wanting to live. Yeah, and it will hit you really quick.
Yes, I, one person out of a podcast, Caroline, Clive Warren, she's use this terminology circling this drain of despair. And I think so many people live there. And for good reason. I mean, we are used to getting up on a dime and taking our ourselves or for you know, to the hospital, I mean, or thinking, Oh, my God, I see this happening. What does that does that mean? It could lead to something life threatening. Now, I will say that that's not happening in my life right now. Knock on wood, but many people still, you know, may live with that long term. And that affects your whole your psyche, and you're just CTP up to see PTSD, ongoing trauma. And I think one other thing is like, whatever you whatever you bring to your relationship with TSC is going to get blown up and brought to the forefront, there's really no way to run and hide, so your baggage that you bring into a relationship or whatever, all that stuff, I guess for me has had to come up one thing after another and, and kind of come up and out. And that's been, you know, a long process. And it still goes on, but I you know what, like what Brooke is saying, I mean, it doesn't mean that you have to be doing something to help yourself every second of the day, because Holy sh it, I don't do that. But not try, you know, when you do get stuck in the rabbit holes, because we all go down them. And sometimes, you know, I'll go through a stretch where I am just in a funk and I need to It's okay, you got to like let it be let yourself run from the pressure we run from. We run from those those extremes. And you know, there's just such a value for really like kind of sitting in your crap and figuring it out for yourself.
there is value in being in your own silence and in your own head. And I think for the longest time, I was afraid of my own head. So I distracted it with things that I could just escape from whether it's reading a book, or watching those news cast or, you know, like, whatever could be a new reality for me, it felt better. But it also wasn't fulfilling. And so when you're saying that, like I had to really get to an empty place where I had literally nothing left to like, I don't know I've been there. And so I I guess I'm speaking like you are from experience have we been in a dark place. And there is a time after I had COVID it affected me more mentally than it did physically. And I was in a dark place. I didn't know if I could dig myself out again. And so I'm like, bro, can you do this again, and I cried. And I was like, okay, you gotta dig her out, you got to get her out. Because she has a purpose, she needs to wake up like, there's so much left we have to do. And between that I got into a car accidents had COVID was off. Like it was just a mess. But just in realizing that like, I'm not playing the victim because of this circumstance. I'm gonna rise up from this, but I've had to be in some dark places that were very lonely. And I guess what I was gonna try to say to you is I'm at the point in my life, you can bring up my past, you can tell me everything I've done and I've had that spiral to through the divorce and through that thing. Not exactly, probably we're all different. But I had that time where I had to be like someone I completely wasn't just appeal myself again, you know? And I'm not proud of it. It is what it is. But I'm at the point in my life where you can bring up whatever you want. I've moved past it, and it doesn't hurt me it's actually part of my growth. So it's not that I'm shameful or Wish I mean, I guess I wish I wouldn't have been to the extreme that I was because I went off the rocker. But I'm glad I did. Because I know that it's it's past it's behind right
you know, right and you know, you brought your you know, of course you had help and whatnot but you you were able to recognize that and see it and not get get try Knock, knock, knock. I think that's a big thing. You know, cuz Yeah, I do have those. I have had a few like low places and I always think You know, this will be the last time that I go down a dark hole. But it won't be an MC, it's just knowing that you do you are going to be on the other side of it. I will say, you know, I think back to when the kids were younger, and I don't know about you, but I'm I experiential learner everything. It seems like maybe I'm autistic or something. I can't learn it unless I live it. So I mean, with the kids and their meds and whatnot. I mean, I used to try their meds. I used to feel like I had to see what it felt like, you know, and I get that. Yeah, and I think back and I think, oh, my goodness, I mean, when you're managing, like, three offspring with all these different medications, you know, you have no idea how they're experiencing it. And yeah, so that was one that you know, I was at the place where I would, I would I would try it, I can tell you exactly how this med feels. And that midfields I mean, it definitely was not ideal, but also that desire to alter alter your consciousness, I think is a normal human desire. And I want to just speak about this briefly. I don't think it's, we should feel bad about that. I guess with my daughter, I think that's come up because she had a drink of alcohol. And she realized that she, you know, it gave her that feeling and maybe I'm explaining it wrong, but just let like altered sense where you know, you feel like I don't know what your thing is, that puts you there. But it was just like, the minute she did that the hammer came down the hammer of society came down and you know, and she was she is chasing that feeling. And how do we find that feeling without being self destructive and whatnot because I again, I think that you want to you want to have a drink fine. You know, you want to use cannabis recreationally and get really blasted. You know, I think you need to really consider Of course, your surroundings and anybody that you might be affecting, but alter your consciousness think outside the box. I mean, we're, we're so locked into this like, right and wrong, good and bad. And experiment, you know, in safety. And don't be afraid of that. I think it's a wonderful experience. I will say microdosing psychic, psilocybin has been really helpful just for that change of perspective that like larger broader connection that it's hard to describe. And now I'm pretty much labeling myself as a whack. So anyways, yeah, no,
you're not. No, I totally get it. I think that's what I was searching for that like out of body experience. I felt like I had some kind of control, but without having control. And so I didn't try the medication but I was on a lot of suffering was on anyways. So I do know what that felt like. We were on very, we were both on Risperidone. We were both on Wellbutrin. We're both on. We're still both on Afinitor. That's the drug that I am still on, are both on citrusy. So we were on a lot of the same stuff. So I guess I didn't have to try it. But I did always chase that feeling of wanting to have control because I had no control when I wanted to control that if I drink. And so when I yeah, I totally understand that completely.
Yeah. And how do we give that to our, you know, our loved ones that are on all these meds or that you know, for them for my daughter, you know, drinking would be risky, but they're in their 20s or she's in her 20s It's a normal thing to do. How do we safely you know, again, it goes back to human rights. So anyway, like
my son, I he's dealing with some like, not motivated, and I'm like, okay, so take vitamin B six in the morning and take melatonin at night to get yourself rest because he wants to stay up and be a part of like the nightlife. We'd like singing orchestra. We're on a zoom or Dallas. Yeah, so I'm like, Okay, I get that and I love you. But like it's three in the morning. He wants to know that I've got my daughter sleeping. He's up doing random stuff. And I He's like, well, I'm just not motivated to be at school. I'm like, okay, so yeah, I just I don't want him to go on meds. I really don't. I want him to try to do it all natural if he can, as long as we can. If If I have to admit to myself that he does and we will but right now we have counseling going on. And counselor at the school counselor that telehealth so whatever I need to do right now I'm doing whatever I can on my end, but he knows he's seen his sister go through so much stuff. I just don't want to start and have to fix this because you have side effects of this and then it's a whole thing and then you you know, I just had a friend get rid of 12 medications. She doesn't have THC, but she just was sick of it. She's down to two got a new doctor. They figured out that half of it was because it was helping the other stuff not have the side effect of the other stuff. So everybody's on their own journey to not do pharma. It doesn't have to do with THC. It's just we want to feel again. And so when you're looking for that feeling, or that excitement is really within yourself in the self care. And so when you say that like for me, I can't go to Jamaica and have some ganja because I will pass out and ruin my whole trip. However like you know, if I Did it more at a safe level possibly, but little doses for me my body absorbs stuff really, really well with THC. So I have to watch that because I will be not effective. If I do that, like what you said if you want to pass out and yeah, but for me, I have to like less is more for me because it actually helps me more if I use last but everybody's at a different place in their life not judging. I hope I didn't say anything wrong, but
no, no, there's no nothing wrong. There's no rules here. Yeah, I think that we've pretty much covered everything. It's been a fabulous chat.
I've enjoyed this.
Yeah. So for everybody out there watching, thank you for watching and we will be back at some point.
We will sooner than later. Thank you.