A different shaped heart conversations about disability awareness
Welcome to A different shaped 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 different shaped heart conversations about disability awareness
What Happens When You Advocate Louder Than Pain
A birthday fall didn’t seem like a life-changer—until weeks later when pain roared, the knee wouldn’t bend, and the ER’s answers didn’t match what the body was screaming. We walk you through the messy middle: canceled surgery, a psoas impingement label that didn’t fit, a rehab stint that hurt more than it helped, and the relentless push to be heard. When an orthopedic visit finally led to a CT scan, the truth landed with force: the hip had been 50% out of the socket since June.
From there, everything sharpened. We break down the three paths on the table—removing the femoral head, living with a barely functional leg, or committing to a total hip replacement—and why choosing the replacement is the only route back to stability, mobility, and independence. Because cerebral palsy adds muscle spasms that could threaten a new implant, we also share the cast-first plan designed to protect the hip during those crucial early weeks. Expect candid talk about pain management, realistic PT milestones, and a recovery arc that includes six weeks of healing and two weeks of focused rehab.
This conversation is part battle map, part field notes for anyone navigating complex care: why X-rays can miss what a CT reveals, how to advocate when you’re dismissed, and what it takes to align surgeons, insurance, and timing around the holidays. We also look ahead—standing with a walker, getting back to school on a smarter schedule, and releasing a special episode of the birthday speech recorded on day one of the injury. If you’ve ever felt lost in the system or needed a blueprint to push for the right care, this story offers clarity, courage, and a plan. Listen, share with someone who needs a nudge to advocate, and if it resonates, subscribe and leave a review so more listeners can find their footing too.
Can't keep up with AI? We've got you. Everyday AI helps you keep up and get ahead.
Listen on: Apple Podcasts Spotify
Good afternoon everyone. Welcome to Unwinning Heart. I have something to tell you that's been on my heart that I can't I couldn't tell you until it was official. It's still not official, but we're working on it. We're working on the end of insurance approving it. So basically what is happening is I went well let me back up before I tell you what is happening. On June 22nd, which is my birthday, I was feeling perfectly fine and I fell off bed. Me being the idiot that I am, I fall off the bed. Typical sample folding fog falls off the bed on my birthday. Um and I thought I internally bruised my right hip. Yeah, my right hip. And so I don't do anything about it. I go give my speech at my church and I go celebrate my birthday. My birthday. All is good. All is good. Well July so that was the middle of June. July sixteenth happened. Oh my god. The night of July sixteenth into July seventeenth. Oh my god, that was the worst night of my life because owie owie owie and my right hip. So basically July seventh July 16th, I um I can't bend my right knee to I can't get my legs to go down to save my life. And I'm thinking, uh oh. So I tell my aide, we need to get dressed. Get me dressed, try to get me dressed, and I tell my aide, we need to try and get me dressed. My knee won't go down, we need to call. So I press the SOS button on my phone, call emergency services, go through all that. I'm sitting here calming the cucumber on the outside, freaking out on the inside. I'm thinking, oh my god, what did I do? So then I go to the hospital, I keep saying, my hip is out, my hip is out, my hip is out, me screaming in the emergency room, well, um, me talking loudly enough not to yell, but I keep saying my hip is out. So they do a CAT scan, they do MI. They no, I'm sorry, they didn't do IMI. They did a CAT scan and an X-ray. Well, turns out, and this is in Phoenix, Arizona, we have Mayo Clinic. No, this was not at Mayo Clinic. We have a Mayo Clinic five minutes away from my house. If that we have, um, and for those of you that don't know, Mayo Clinic is one of the top hospitals in the country. They have campuses in Florida, Chester, upstate New York, and then Arizona. So people fly in to Mayo Clinic like there's no tomorrow. And I happen to have Mayo Clinic five minutes away from my house. And so I go to the local hospital here, um, which is a teaching hospital, they it met me thinking it's uh remember I told you guys I have a psoas in henchment. Well, all they kept saying is we well first of all, they canceled hip surgery on me. That was a good one. They um put me supposedly for hip surgery and then they cancel it and um say it's a psoas impingement. Well, I'm thinking okay, so I go to my orthopaedic surgeon and so then um my orthopaedic surgeon goes, geez, I hope let's try cont let's try physical therapy. So we started that after rehab. We started that after remember I told you guys I spent two weeks in the rehab center that wasn't good? Well, the hospital made me do that because they couldn't figure out why. So the hospital made me um go to rehab. I'm like, what what? I have nothing with me at this point. And so you're making me go where? To rehab to try and manipulate this leg. Well rehab was a disaster in the half. Owie, owie, owie, owie, owie. Owie still. And so um rehab said, well, why don't you go to outpatient PT? Yeah, with one bent leg and one straight leg. So yeah, that and my medical liaison is looking at the rehab like I can't do this. She can not move. She can not move. So um fine, we hook up with uh at-home PT. They're doing what they can to bring the leg down. I even remember I told you guys I even rented a dyno splint from insurance, and I didn't buy that thing out, right? I had it on a couple times. That thing is huge. So fast forward, we're not dealing with the dyno splint. I made the fatal mistake. Well, um, I made the mistake of announcing something on Facebook last night because I was so freaked out that this is actually happening. So for those of you that don't listen to the podcast, you might have read it on Facebook. And so I am now in the midst of as if I don't have enough going on, waiting for a total hip. Because my hip, um my doctor said continue physical therapy. Second visit, he said, geez, I wish you were better now. Third still continue physical therapy. Third visit, he says, well my medical liaison's assistant mentions x-rays. Doctor doesn't think of x-rays to begin with, and with x-rays you can only get uh one viewpoint. So my doctor literally says, I need Wyn to go get a CT scan. If Wyn can get in the CT scan at this point, and my aide is sitting there, and I'm thinking, yes, I can get in the CT scan. They did a CT scan for the blood clot, the mysterious blood clot they thought I had when I had pneumonia. So I'm like, I'll go get a CT scan. So on Halloween, I went and got a CT scan. Well, the results are in. Basically, my hip since June is out of the socket. And I knew this going in. The hospital didn't see anything. Always have a medical advocate with you, or always advocate for your body and scream it at the top of your lungs like I did. Apparently they don't listen to me. Um, which I'll get to in a minute why. And then um so my hip is out of the socket 50%, which means every time I move it hurts. It hurts like hell. So basically, he gave me my doctor, my orthopedic surgeon gave me three options. He said we can either take the ball out of the hip and just leave it, and that would leave you with a fairly floppy leg, which wouldn't um wouldn't help you in standing. And I'm like, no, it wouldn't. Who does that leaves with a fairly floppy leg? Um so um and the third option is a total hip. So I said, I will go with a total hip. Now, in my case, with typically they don't do this. Um typically they they don't do this. In my case, they are um doing a cast after the total hip. The reason why they're doing the cast, and the reason why they're not leaving it alone, like a typical total hip is, um, is it to calm CP down because muscle spasms will pull the dang thing out if they don't cast it. So we have that. We have six weeks of recovery. We spend I spend two of those weeks in the rehab center, yes, working on PT daily. Um, yes, because in my rehab center, I get treated like a VIP. I've been up there twice. I didn't go up there for the initial diagnosis of getting leg down, but because the initial diagnosis of getting leg down was such an emergent emergency situation that I couldn't. So basically what happened, what is going to happen, I'll have the surgery, I'll have a total hip on my right side. Now, for those of you who are thinking, what what a total hip? Yes, you heard me right. A total hip, which means they take my hip out and put mechanics around it, or they leave my hip and then put mechanics around it. I believe they take my hip out and put mechanics around it. No, my hip is not bone on bone. It's not I'm not at the age where it could be bone on bone, but they want to do it because it's a high rate of success. And it will bring my mobile my mobility back. So basically, you will see me standing again with a walker with my support crew behind me, and you might see videos of me walking because yeah, for those of you that know me personally, for those of you that know me in public, like um, you know that I like to keep keep my intended, and you know that bed bound is driving me absolutely crazy. Being bed bound, eating three meals a day in this bedroom is driving ups is driving me up so wall. So what do I do in the um function of weighing for total hip? I go to church number one, because church is my same space, so tomorrow I'm spiting everyone up there, and when I say everyone, they have no idea that I'm coming. And so I have friends up there and they have no idea that I'm coming. So that should be interesting, and then I, as I said, I will announce the date of my hip surgery. They're also linked to name the muscles in my um tendons to keep my tendons happy while they do the turtle hip. Yeah, so it's a lot. It's a lot. So I'm going to church. Busted hip should be fun, should be interesting. But yeah. I can't um I can't be in this house anymore. I won't be. Um this is gonna be a crazy month and I'm supposed to go back to school and I'm like do we play it after hip surgery and then start once recovery is going or do we pick it up um in recovery? I think I think once I um figure out the hip what date my hip surgery is, I'll call them, I'll call them on Monday and ask them to start it in January. So if so if that yeah, I'll probably do that. So if my hip surgery is in December, which I shouldn't get to call in five to seven days, to schedule hip surgery. Yeah, um so unfortunately I'm gonna be down for the count for six weeks. Oh, when they told me that. Two big huge braces later and uh beyond the camera. I'm like, great, fun, but it's better than having I want my hip in socket, of course, but it's better than having a hip that's 50% out of socket and screaming at me every time I move, exce for the exception of lying down. Although it sometimes screams at me even when I'm lying down. So I'm like, great hip. Yeah, yeah, winning this Christmas, you're winning this new year, it's gonna be a Christmas present, and uh maybe a new year's present. I don't know when insurance has decided to approve it. So I don't know. Busted hip. Here we come to fix it. Bionic woman, here we come. So it's like really Merry Christmas to me, a total hip. And I just thought of that. Merry Christmas to me a total hip. Uh uh expensive Christmas at that, but thank God insurance is coming up for it. So we'll see when my date is and I'll be dancing down always after this. And so yeah, either I'm down for the count around Christmas, or I am up for the count around Christmas and down for the count in 2026. But I think it's gonna be down for the count around Christmas and start the new year with a brand new hip. I think that's gonna be the goal. Or I don't know, now I'm waiting for insurance to approve it. So yeah, that's my story, and I'm sticking to it. And yeah, so fun. Sometimes hip replacement here we come, and I'm gonna let you guys go, and then next week we're going to go on the lighter note now that you um know about my hip. And I will set up the day of my surgery, no matter uh what day it is, I will release a special podcast of the speech I did on my birthday. I have it recorded, and so you can hear me. I don't wince wince in pain, you can hear me speak while having the first day of having a broken hip. So that's gonna be fun. You can hear me speak while I'm getting my hip fixed, you guys. So I'll release that the day of my surgery. But we're gonna let you guys go, and next week we're gonna talk about cruising and other fun with Mickey and Minnie Mouse and um The Disney Cruise by Danny Golden Not Mind Me because I haven't looked at four months. Yippee, I'm so excited for uh 2026. I um I don't know if as I said, I don't know if this surgery is going to be the end of 2025 or the beginning of 2026. But either way, I'm excited for 2026 to be up and moving finally and have the appropriate diagnosis. So I want you guys to tune in next week and we'll have fun, and it's gonna be uh a pill battle from here. And yes, I'll be recording TikTok and possibly we be recording podcasts either in the hospital or on um in rehab talking about uh hip replacement as a study seven year old slash study eight year old and so be on the lookout for that and talking about a hip replacement with cerebral palsy, and so I'll be doing it all via myself, and it's gonna be interesting. So you're gonna come along with on this amazing journey with me, and we're gonna let you guys go, and you have a lot to think about, you guys. So how you can help me is just send players and good wishes, and I'm not asking for any monetary donations because I've got health insurance, I've got it all covered, and so it's perfectly fine. We just need to wait for the green light, and as I said, I'm waiting for to approve it, and then we can get the green light. And so we're gonna let you guys go. But Danielle, do you wanna leave us out? Yeah, yeah, yeah, so uh thanks for following us, you guys, what's the cute funny set on the other side? Oh, and this is being recorded via my phone because I was afraid that Zoom would kick us out. So this is being recorded via my phone. So that's how I would be doing it in the hospital and in the rehab too. I would be well in the rehab I would be using the Wi Fi, but in the hospital when I feel up to it, I'll be using the phone because hospital Wi Fi is icky. So we will catch you guys next week. Bye you guys. Bye.
