A Winning Heart
Welcome to A Winning Heart conversations about being awesome with a disability and raising awareness at the same time and absolutely Yes sometimes you have to say F…..CK you to your own mindset and especially your disability!
A Winning Heart
Living Beyond Limitations
Welcome to A Winning Heart, where I explore the importance of maintaining a positive self-image while living with a disability and navigating the healthcare system.
• Rebranding the podcast to "A Winning Heart" for better memorability and visibility
• Developing a positive self-image while living with disabilities through intentional interactions
• Coping with C. difficile infection as a complication unrelated to cerebral palsy
• Understanding the basics of cerebral palsy as a lack of oxygen to the joints
• Managing multiple health conditions including CP, C. diff, osteoporosis, and asthma
• Becoming your own medical advocate when doctors don't believe disabled patients
• Preview of upcoming episodes on medical advocacy and understanding cerebral palsy
Join me after a brief hiatus for Season 21, where we'll dive deeper into medical advocacy and continue educating about cerebral palsy.
Welcome to A Winning Heart, you guys. Well, I'll briefly explain why I turned the name once again Because it's easy to remember. It's easy to remember and a winning situation was getting stuck at the bottom of the heap number one and number two. I just needed an easy name to remember, just because, yeah, so from now on out it's called a winning heart. And you guys, if you know, you know For those of you who've ever visited Arizona in the summer, you know it's a million degrees and it's a million degrees.
Speaker 1:So, apparently, I just woke up from a nap so I didn't realize what time it was. So, thank God, my friend Danielle was hanging out waiting for me, because she didn't call me. She didn't do anything, she just sat there and waited until I showed up. So that's a million degrees later. So, but we don't talk about the heat in the Arizona, because, yeah, that, yeah, if you know, you know, and heat in the ozone is not good.
Speaker 1:But what we do want to talk about is having a good self-image when you have a disability. I was thinking about that, see, I think of podcast episodes when I'm in the hospital dealing with C diff. So I thought about this one when I was in the hospital dealing with what I was dealing with. Now I am just now dealing with almost the end of C diff, although, as you know, as I told you guys, c diff will never go away. So colostrum difficile will never go away and it will just go away to the extent of my body likes me again, and that's it. And people go well, when You've been through too much already, yeah, I have. So I might as well hold a good self-image. Well, I can, because nine times out of ten we're going to be in the hospital dealing with this thing. I mean, you can't deal with C diff when you're at home. No, you can, but no, no, it's just too much to deal with when you're in a home environment. Good self-image, here we go. So what I tend to do in the hospital because if you say anything out of line in the hospital they will call security so what I tend to do is be really, really, really, really, really, really, really nice.
Speaker 1:One of my things is, even when I'm feeling icky, I tend to ask people what brought you into nursing? Why do you like nursing? Why? So I tend to have a really good perspective, even when I'm not feeling that great, and day by day, I could fit it. And the funny thing is, I don't shut up unless I'm not feeling that good. So everyone knows this, including Danielle. So I don't. The fact of the matter is, you know, when I'm not feeling good, I shut up. So if I shut up, that means I'm not feeling good, or I've been pushed to the 10th degree.
Speaker 1:So, having that self-image and we're not talking about the way you dress it's the way you present yourself in these weird situations. I mean, I'm getting. I, after 15 years, I'm finally taking care of something that I need. Well, two things that I need to take care of. And one I might be having deviated substance surgery, which means the podcast would be put on hold, because you really can't hear me when I have gauze and stuff up my nose trying to let it heal. So no, but it's not the. And I'm also getting new orthotics. You guys, after 15 years, I'm getting new orthotics. I'm finally taking care of myself. Move to Arizona and finally take care of yourself.
Speaker 1:So it's the way you present yourself in a way that people will like you and people will understand you, and I think it's the way that Danielle and I grew up. Danielle and I grew up without cell phones, without technology, and if you'll ever see the archives of videos of us, we're able to hold a conversation, danielle and I, in public places. Danielle might talk a little bit louder just to get the point across, but other than that she's good. But when she sees well, especially when she sees me, she's live in prison. She comes running at me, you guys, and the running joke is don't fall, don't fall, don't fall. And that's what I said to her a couple years ago when I saw her live in person. Yes, I have seen my BFF live in person since moving to Arizona, in person, since moving to Arizona, and she'll come running, like literally running at me and like the running junkies, don't fall. Of course. She falls in my lap intentionally and doesn't let go of me, doesn't let go of me.
Speaker 1:So I think a good self-image is how to present yourself in a way that you it's like the old adage treat others how you would like to be treated. And so if and you can teach this in a life skills class too good self-image on don't make a fool out of yourself. If you don't have to, I mean, sometimes you need to make a fool out of yourself to get the point across, but nine times out of ten people will understand you, even if you don't make a fool out of yourself. And so I think I think I know I shouldn't say I think I know human society and I hate to put it this way, but I will disabled or outcast Disabled have been outcast for a long time people with CP have the weirdest game ever.
Speaker 1:People with CP have the weirdest game ever are told oh, you're not smart until you get to know us. Then you end up getting to know us and it's just fear of the unknown. And you guys will hear recording of me speaking live next week. Next week happens to be my birthday, which we don't admit that to anyone, even though we just did. But you will hear me speak on the basis of what is cerebral palsy and educate people, which means I am trying to educate people along the way what cerebral palsy is and what cerebral palsy is not, what cerebral palsy is not. So I will always be the educator, even outside the classroom. I will always be the educator of okay, cp is CP, I can get independence. If you get me angry at you. You will not be my good friend if you get me angry at you and people saw that after my back surgery. Then I got very, very, very, very, very angry in the hospital immediately after my back surgery too, to my back surgery too, and they're like, okay, you got put in the position that left you vulnerable and left you very angry. So I, other than that, I tend to speak my opinions and people know this, and so I can't shut up from what I believe in educating people around the world about CP, because I obviously can't shut up, and this has been my thing from day one. I mean, we started this project. It's been going over 15 years now, danielle and I so and it will continue, and it will also continue to be an interview show and so, if you guys want, you can click on the website. You can find me on PodMatch when that is open back up again. And yeah, you can just figure it out. But I am trying to educate people about CP.
Speaker 1:And one quick fact, and for those of you that don't know what cerebral palsy is, aka CP for short, it's an unblowin' term that is used there's several different types of CPD, dan. You actually have a different type than I do, believe it or not, and I have the most common one, which is ataxia spastic cerebral palsy. Which is ataxia spastic cerebral palsy, and basically what cerebral palsy is in a nutshell, is a lack of oxygen in the joint bus. So therefore, yes, and now you may ask me this does C diff have anything to do with cerebral palsy? Glyphosate and diphosphate have anything to do with cerebral palsy, or C diff as it's known? But no, it doesn't. No, it doesn't.
Speaker 1:Does double weak lungs? Yes, it does. Cialis palsy has weak lungs to begin with, and then cerebral palsy on, that on, in combination with asthma, yeah, like that's fun, and then in. But cerebral palsy does have GI issues out the yin-yang. No, c diff doesn't have anything to do with cerebral palsy.
Speaker 1:No, I didn't catch it because I had cerebral palsy, I have cerebral palsy. No, I didn't catch it because I had cerebral palsy, I have cerebral palsy. No, no, no, wrong place, wrong time. Wrong place, wrong time. I caught it. Well, I'm going to tell you guys where I caught it. I caught it in a rehab center in Scottsdale, arizona, and this rehab center knows how I feel, and so, yeah, they know how I feel, the hospital knows how I feel, the hospital knows how I feel.
Speaker 1:Two misdiagnoses later and finally diagnosed and so C diff will never go away. It's one of those. I have to be careful with my neck surgery, how they give me. If they end up giving me antibiotics, which they do to cure the infection, I have to let them know which I will, that I got C diff because C diff is kicked up by too much antibiotics. So one of my extra comorbidities is C diff. I have double weakened lungs, I have cerebral palsy, I have osteoporosis, I have a brain bleed, I have C diff, I have organs that are too small for my body, which has to do with cerebral palsy, and I am still here, still kicking it. So basically, and I have asthma too. So basically those comorbidities equal me and I love my life, even though C diff kicks my butt when it's in a flare.
Speaker 1:And I just have to be careful now with the antibiotics usage. And now I just have to be careful of being in not necessarily being in hospitals, but I just have to be careful with the antibiotics usage. And I'm going to be careful when I'm in hospitals too, and I'm going to watch People Like a Hawk. And so we'll see if they give me antibiotics for my next two surgeries and I will be vocal and be my own medical advocate on this one. And so, yeah, I just have to be my own medical advocate.
Speaker 1:Teach you guys, maybe, when we come back on, how to be your own medical advocates, because what I'm coming to find out is that doctors don't believe the disabled. They believe the AIDS and medical liaisons more than they believe the disabled person themselves. I mean, I've gotten in fights with people from hospital beds too and I just basically said, yes, you, you did now leave me alone. So, basically it's, you have to fight for your own independence. And that's why I said at the beginning I'm really really, really, really, really nice to people. When it comes to me being sick, me being in a hospital, I have to be really really nice to people because they're not going to want to help me, and I need extra help with CDIF.
Speaker 1:So, yeah, when we get back, which will be the end of July, the beginning of August, because we are taking, but don't worry, you guys will still hear me by that time I will have Podmatch opened up again and I will I will definitely teach you guys how to be your own medical advocates because, let's face it, your level ones are going beyond this planet longer than you are, because if your parent of a disabled child or have a loved one who has a disability, a loved one who has a disability, I bet you, your loved one, is going to be on this planet more than you or longer than you are. So, basically, I have to teach you guys how to be your own medical advocates, because I don't want you guys to get tromped on, I don't want you guys to get stomped on, and I really have to have you guys be your own medical advocates, because if I go out this door without teaching you guys how to be your own medical advocate, then what's the point, what's the point of teaching you about cerebral palsy without medical advocacy slowing in there? So I'm going to let Danielle lead us out and then we'll be back, probably the end of July, the beginning of August, with a new season and with a new episode on medical advocacy. So I'm going to let Danielle lead us out. Thank you for following us. What the cute funny said over there. Thank you for following us.
Speaker 1:And next week will be a bonus episode of me speaking. I mean, someone's got to record it on their end. So yeah, so you guys will hear me speaking and you guys will see it on YouTube. And by that time, by the beginning of July, I will have Podmatch open up so you guys can get a hold of me on Podmatch and then we'll get rock and rolling with season 21 and keep going and yeah, which is a little unbelievable that we're on season 21. And sorry about the stupid C diff hiatus, I mean the stupid back surgery hiatus, but it is what it is. Life kept lifing and got in the way of my work, but I appreciate everyone's support and we'll be back with season 21, and we'll kick it off with medical advocacy and, yeah, we'll kick it off with the invention of simple policy and medical advocacy. So I will catch you guys later. Bye, you guys, bye.
