Resilience in Motion

Join us for a deeply moving conversation with Ashley Spalla, as she recounts her extraordinary journey living with Ehlers-Danlos Syndrome and hip dysplasia. From a seemingly benign basketball injury in college, Ashley quickly found herself facing a challenging medical path that culminated in 49 surgeries over a decade. Her story, filled with determination, resilience, and hope, offers valuable insights not just into the challenges of navigating chronic illness, but also the importance of advocacy, community support, and self-empowerment.

Ashley passionately discusses how her struggles led her to a fulfilling role as an advocate for others experiencing similar challenges. Discover her work with Miles for Hips and how she is committed to raising awareness and improving the patient experience in the healthcare system. She speaks candidly about her experiences with medical professionals and the crucial lessons she learned along the way, emphasizing the importance of seeking second opinions and being an active participant in one’s own healthcare journey.

Moreover, the podcast explores Ashley’s love for adaptive sports, highlighting how her passion for skiing has brought her joy and a sense of freedom despite her physical limitations. Listeners will find inspiration in Ashley's perspective: that living with chronic illness doesn’t mean giving up on your passions – rather, it can lead to discovering new avenues for joy and personal growth.

Through her heartfelt story, Ashley invites you to connect, reflect, and perhaps share in the triumphs and trials that accompany living with a chronic illness. It’s a conversation that speaks to the core of what it means to overcome adversity and emerge stronger on the other side. Don’t miss this uplifting episode filled with wisdom, humor, and hope! Subscribe, share, and connect with us in our communities!

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

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Chapters

• 0:00 Introduction to Spoonie Sisters
• 18:25 Meet Ashley Spala: A Journey Begins
• 26:09 The Start of a Decade: From Basketball to Surgery
• 44:39 Giving Back: Advocacy and Adaptive Sports
• 1:02:45 Emotional Challenges and Finding Strength
• 1:21:31 The Importance of Patient Advocacy and Community Support

Transcript

Speaker 1: 0:08

Hello and welcome back to my Spoonie Sisters, where we bring you inspiring stories from those navigating life with chronic illnesses. Today, we have an incredible guest who has faced an extraordinary medical journey. Her story began in college. What she thought was a simple injury evolved into a decade of resilience and determination, with 49 surgeries, 29 of them just on her hips, and a diagnosis of Ehlers-Danlos Syndrome. She fought through unimaginable challenges. Not only has she overcome these obstacles, but she's also giving back to the community through her work with Miles for Hips, her role as an adaptive athlete and her advocacy efforts. Please welcome Ashley Spala. Hello, welcome to the pod.

Speaker 2: 1:00

Hey, thank you guys, Thanks Jen, Thanks Andy. I'm so excited to be here.

Speaker 1: 1:06

Thank you for joining us today. It's myself, andy and Ashley. We're going to have a wonderful conversation. We did, you know, like Andy says sometimes, the stuffy bio. Do you mind telling us your story with what you thought was a pulled muscle during your ROTC basketball game, and can you take us back to that moment, how it felt when you learned it was much more serious than that.

Speaker 2: 1:30

Yes, I was playing basketball for ROTC in college, I actually thought I had pulled a muscle. When I came back from the game I went to my local sports doc and was like, hey, I think I pulled a muscle, maybe tore some cartilage, thinking in my head maybe this is like a scope surgery. I'll be out for a few weeks. I should be back in the swing of things in a couple months, big deal. He's like let's get an MRI. Okay, that sounds good, let's be thorough.

Speaker 2: 1:59

The next morning he calls me at 8am and I'm like this is not good. And he goes you have hip dysplasia. And I'm like like a German shepherd. And he's like you said it, I didn't. I'm like, oh my gosh, like a German shepherd it I didn't. I'm like, oh my gosh, like a german shepherd. And he's like I have to send you to a surgeon. Oh so this isn't just like torn cartilage. And he's like, oh, you have that too, but you also have hip dysplasia. I'm like, oh, so this is a big deal. And he's like, yes, and so I'm like okay, then I get to the first surgeon and the first surgeon's like I don't deal with this. Not many surgeons deal with this. I'm gonna have to send you to another surgeon. So then I was like shit, this is huge, this is big, the surgeon can't deal with this. I'm gonna have to go to another surgeon.

Speaker 2: 2:48

And at this point I was very green into the surgery medical game. I'd had maybe two surgeries at that point. They were outpatient sports surgeries at a clinic like nothing like in a big hospital, nothing with staying overnight, nothing like that. Totally unprepared, not aware of like how I should advocate for myself or if I should have a second opinion, none of that. When this trusted doctor, you know, at a clinic I had gone to for years, sent me to another clinic, I thought, okay, well, this is probably the doctor I should be at. Lo and behold, he did not do the surgery correctly, he was not trained correctly. Behold, he did not do the surgery correctly, he was not trained correctly.

Speaker 2: 3:36

It set off a decade long of surgeries and issues. It led me out to Boston Children's Hospital and to a myriad of other surgeries, including a femoral osteotomy, which is where they break and rotate your femur, and then um other hip surgeries and scopes, um other major reconstructions being done to try to like alleviate what was done previously. I ended up having a hip replacement done at the age of 29, which was only eight years after the original surgery, because at that point we had done everything. And then some I happen to be. Life likes to smack you in the face after you've already been dealt with. Enough stuff. I ended up being 0.01% of the population this doctor likes to tell me.

Speaker 2: 4:27

I got in a reoccurring infections in my hip replacement that cost me my hip. So I lost not only the hip replacement but my hip entirely, my right entire hip, for about seven and a half years. I had it reconstructed in Chicago in the fall of 2023. Even then, it's still about 40 to 60% of what it could be. It's very painful. I still have issues to this day.

Speaker 2: 4:57

It's not a typical total hip. When I say total hip replacement, it's not one what everyone thinks of. When, when I say total hip replacement, when when you like look up a total hip replacement, it doesn't look like one on an x-ray, like it's very like I'd have to say medieval. It's got like a cage on it, like just like it's got a lot of extra metal because I had a lot of my pelvis missing from the infections. The infections caused me to be on vancomycin so long that it caused severe kidney damage and kidney failure and so I have stage two kidney disease from that. So a lot of a lot of pain and suffering from an initial surgery that shouldn't have happened that way.

Speaker 2: 5:44

Now that it's kind of in a stable place um, as much as it can be. I work with others to promote awareness and education on what should be the proper way to go about surgeries. Get second opinions, what questions you should ask. Here's the proper information, here's education on what is hip dysplasia, what is femoral osteotomies, what is avascular necrosis or other hip disorders. And then, as well as then, I do my off time adaptive sports. I've done everything from wheelchair basketball to racing with Challenge Athletes Foundation, which my favorite thing is winter season, which I know people think I'm crazy because I love winter and I love the snow. So I go out skiing, adaptive skiing. That is my fun thing to do, so I'll be doing that the next week or so I'll be flying out to Colorado to go adaptive skiing again.

Speaker 1: 6:44

That actually sounds incredible, thank you. But I'm also going back to some of what you said too, and eye images. Right, I've got all these images going in my head of what this looks like. I'm almost picturing this cage. When you said medieval, I'm picturing like chicken coop material for some reason Don't ask me why, but that's where my brain went was a chicken coop hip. I mean, it sounds like this torture that you've been through.

Speaker 2: 7:10

It kind of looks like it kind of goes around the hip, it cages it kind of like around the hip to hold the hip in. It's like a wire system. So it kind of is a little bit.

Speaker 1: 7:23

If that it makes it sound like I could make it visualize what it is from there you had to have more and more and more sounds like there's not much of a hip there to even work with, so how do they go around building that up?

Speaker 2: 7:36

They do what's like called a triflange and it is like a metal like prosthetic of your socket. Then they put in the femur the femoral head and then off the femoral head the like goes down into your femur all the way down. The rod goes all the way down and because I had about this much missing of my femur about four inches they had to make up for that with metal. So I have a very long metal rod almost down to my knee which hurt, um, especially when it gets cold or especially when the weather changes. It's not even so much when it gets cold or especially when the weather changes, it's not even so much when it gets cold, it's when the weather changes very quickly and if you're in the Midwest or in different areas and it changes in like five minutes, like it just is what it is.

Speaker 1: 8:27

You just deal with it.

Speaker 2: 8:28

but that is. It's a giant implant because they have to make up for all the pieces that you've lost and unfortunate. The irony of the situation is with infections the more metal you have, the more at risk you are for more infections, but the fact is they have to put more metal in because you lost because of the infections. So it's like a circular situation of crack Wow.

Speaker 1: 8:53

Okay Now from here, do they think you're going to be kind of status quo for a while? Do they have a game plan for the future? Well, I'm pretty stable right now.

Speaker 2: 9:02

So it's kind of status quo for right now I don't think, unless science changes and moves forward with an implant that I think I would want to go through anything else. So I'm pretty stable right now. I don't have any active infections that I have to worry about. Knock on wood that I would just like to keep it, like you said, status quo.

Speaker 3: 9:49

So, ashley, I have some questions. You mentioned Midwest. Are you currently still in the Midwest? I'm from the Midwest, I'm from the Chicagoland area, very nice. It's different. So when you said you like winters, midwest winters and bodies, you're just built for it and you have to buy your winter stuff from there, because it's just a different kind of cold.

Speaker 2: 10:14

Yeah, for sure.

Speaker 3: 10:16

So, with all of these hip surgeries that you've had, can you share maybe some of your emotional challenges that you faced during the journey of your physical recovery.

Speaker 2: 10:26

I think for me the biggest challenge was dealing with the depression that came along with all of the surgeries. Yeah, came along with all of the surgeries. Yeah, I would go through like surgery and I would get through the hardest part and that would be like the physical part of the surgery and the initial phase. But then in the lull of the recovery and the longer part of the recovery is when you kind of get the like the recovery blues.

Speaker 2: 10:56

I it was coping with all the constant like circular, like I would heal, get better, start over, heal, recover, get better, start over. It was the constant like having to like pick myself up and start over and do that constantly for years and in some years I would have four or five surgeries or more. It was just relentless. Having to learn how to cope with that was very, very difficult and for many years I didn't know how to properly cope with that and so it was some with medication, with the help of medication. In recent years, in the last I'd say like five years, I've done a lot of counseling therapy sessions and that has been a huge change for me and that has been like opening doors for how I deal with like life in general, from medical trauma past traumas to current situations. That has been a huge change.

Speaker 3: 12:01

So there is also another component that plays a significant role in how you recover and can cause some complications. So how did the diagnosis of EDS impact your understanding of how you?

Speaker 2: 12:15

heal EDS. Learning about EDS at the beginning like when I went out to Boston Children's at the very beginning put puzzle pieces together. That surgeon his name was Dr Michael Millis and he put puzzle pieces together and it made sense that certain things didn't work. It also made sense that certain things would work better in the future. He was able to help not only get me on the right track but moving forward and get me to the right doctors. Genetically Also, like with surgeries, I don't deal with local anesthetic very well, so it was doing better anesthesia for me or better pain management, and then for wound care, because I have classical EDS so it affects my skin and wound care a lot more than it does for like a hypermobile patient. Then we would learn how to close our sutures differently. That made a huge difference in wound closures and infection rates. For me that just made a huge difference altogether. Learning about the diagnosis was difficult, but it was also a blessing in disguise because we learned what we were doing wrong to do what was better for the future.

Speaker 3: 13:35

How do you stay motivated through all of those rough?

Speaker 2: 13:38

times I would say it's the people around me, it's my support system, it's my friends, it's my family, my friends, it's my family. For the longest time, up until about this past Christmas, I had a dog for 15 and a half years. She was my ride or die buddy through the whole thing. She was my fuzz nurse and so she was like the best friend I had. But it was everything like that. It was everything from my dog, my parents to my friends, to my support friends online, facetiming, in in the hospital to check on me, and it was everything like that. I would have to say it was definitely, definitely my support system.

Speaker 1: 14:21

Love that little verbiage you threw in there, your fuzz nurse. I feel like this needs to be a meme, a quote, a sticker, I don't know, but it needs to be something. I love that.

Speaker 2: 14:32

For a nurse yeah buzz nurse.

Speaker 1: 14:35

Love it. It's so cute. Now you've had to navigate the complexity of being a patient and an advocate. What has your experience been like with the doctors, and how did you find the right specialists who truly understood your condition?

Speaker 2: 14:50

I feel like trial by fire truly trial by fire for some of them, like pain management has been trial by fire Orthopedics I've kind of learned through my own problems how to red flag situations. I would figure out that was not a doctor. I would look at their CV and be like, okay, that's a doctor that could possibly take my case, and then I would talk with them or talk to their staff and bring up or email them and once I got more into the advocating part of this side of the field, I got to talk to a lot of them personally and then could also talk to them professionally personally and then could work with them on both sides of the fence. So that was very helpful.

Speaker 1: 15:41

That's great. I think that that goes to show that for those listening, do your homework. You don't have to go to the first person you find or the first person that insurance covers. Keep digging, keep looking, talk to the staff. It's worth it. I've actually been doing the same thing since we moved over here to the other side of my state. I've been afraid to switch rheumatologists, but I've been working with the Arthritis Foundation over here and I've actually gotten to meet some of the rheumatologists and now I'm kind of geeking out, going okay, I like this one, I like this one, I like this one. They have great stuff. Okay, now I gotta find out if they take my insurance, because I'm tired of driving four hours and these people are actually quite amazing and very knowledgeable.

Speaker 2: 16:23

Yeah, societies and foundations like that like the Elder Stanlow Society is a great resource. Societies and foundations like that like the Elder Stanlow Society, is a great resource. Like Miles for Hips. We don't endorse any one surgeon but like we will help locate surgeons in different regions for people to recommend. If they request help finding a surgeon, we will help find a like fellowship trained surgeon in that region Same for like the PAO group. I will really try my best. Trained surgeon in that region Same for like the PAO group. I will really try my best. I will even PM, like private message, someone and really try to link in someone to a surgeon. If I know the region they're in or I'm familiar with that doctor or specialist, or if they're having a problem, I will like call, I will go work head over heels to try to help someone get in with the right physician, because I know how much that makes a difference.

Speaker 1: 17:11

It sure does. I think that's a fantastic resource to be able to have for people. And then that's exciting that you're working on part of that. So as a board member for Miles for Hips and you also co-admin of the Perry Okay, I'm not even trying to say it, I'm a partner Osteotomia like osteotomy yeah, that thing. As a co-admin for that or the group, you're now helping others. How has giving back to the hip dysplasia community influenced your journey?

Speaker 2: 17:47

I think it's made me more grateful for everything that I've gone through. It's made me. People have asked me if I've regretted what I've gone through, and I will tell them no, because that I wouldn't have met some of my friends the way, some of my best friends the way I have, and that I wouldn't have been able to do these things. I really think that I'm burdened, meant to do these things for other people. I feel like it's a way of paying it forward and moving it forward. I would love to help advance this patient-doctor relationship, advocacy type of relationship, forward in this field, not only in this field, but in so many others. But this is the one that has my heart at the moment, so it's the one I'm merging with.

Speaker 3: 18:28

Ashley, it's just a slight pause. I am so glad that Jen asked you the question, that she just asked you, because when I was reading it I said to myself I am going to stumble across how to pronounce this and I'm a whole nurse. I looked at it and I was like man, this is really about to test me and whether or not I still remember how to pronounce things. And so, guys, when you listen to the playback, I need you to give, gracefully, jen, some grace, because I'm looking at the words myself and I had to ask no, jen, you can go ahead and take it. We're over here struggling sometimes, guys, ahead and take it. We're over here struggling sometimes, guys.

Speaker 3: 19:13

So, ashley, I want to talk about adaptive sports, because sports is my jam. It has my heart in all capacities. Your decision to use a wheelchair although may be tough, but you turned it into an empowering experience for you. Can you share a little bit about what that transition was like for you from what you did know into adaptive sports, so that you can know it from a different angle?

Speaker 2: 19:38

I knew a lot about wheelchairs from a couple friends and I didn't know a lot about adaptive sports. I actually joined an adaptive foundation local to Indianapolis that did adaptive sports. I would do a clinic here or there. I first started with a basketball clinic and then I joined the basketball team. Then I was asked if I'd like to try a ski trip and I never thought I would enjoy something as much as I did running. I thought I lost my passion forever Once I got in a wheelchair.

Speaker 2: 20:20

We went out and we tried adaptive skiing for the first time five years ago or five and a half years ago, and we were out in Crested Butte, colorado. I went down the mountain for the first time with the instructor and I was like oh buddy, this is it like I found my shit. This is like my jam. I like sliding on snow is the best thing ever. I can do this over and over again and I'm hooked. And I was hooked from that moment on and so, like every year, I gain more and more gear in my room my parents are like like hundred, like lots. Lots of gear is garnered every year for skiing adventures, but it makes me feel so free.

Speaker 2: 21:11

I think that's what adaptive sports does? It just makes you feel so level with everybody else. It puts you on the same level of everybody else. It makes you feel free and open. Everyone out there just loves it. Everyone's smiling. It's not even their job, it's just a fun thing to do and they're just like. I mean. Adaptive sports really does open up so much for people it does.

Speaker 3: 21:34

I love how you glow when you talk about going down a mountain. You can. It's like the adrenaline junkie and you just started beaming and when you said, that's fine, my jam, you're led to your transition to adaptive sports, led to some athlete sponsorship. Challenge Athlete Foundation what is that like? Can you tell us a little bit more about the Challenge Athlete Foundation? The Challenge.

Speaker 2: 21:58

Athlete Foundation is a great foundation. I got my first racing chair from them via the grant from the Challenge Athlete Foundation. Via the grant from the Challenge Athlete Foundation they do different sponsorships and grants for athletes, whether it be grants for equipment or camp or adaptive athletes, because unfortunately for us, insurance does not pay for sports chairs, and sports chairs are very expensive, just like wheelchairs are very expensive, just like everything else in medicine is very expensive. They offer different grants at different age groups and age levels and different offerings at camps at different intervals. There's so many years like types of sponsorships depending on what you're going for whether it be a trip or a camp, or there's different types of things and then you can apply and then they every spring give out the award notices and let you know if you've been selected.

Speaker 2: 23:03

I was selected under their veteran military section under Challenge Athlete Foundation. I was just absolutely stoked. It's a great program. It wouldn't have been possible to get my chair otherwise. It's a beautiful chair, I've loved it for racing and it's something that I think as I move on to my next racing chair, I'll pass that chair on to someone else and let them experience racing chairs, so that'll be a nice experience for them.

Speaker 3: 23:33

So you shared a quote about what from CS Lewis, and I love the quote hardships often prepare ordinary people for extraordinary destinies. Why that quote? What about that is like? This is actually speaking directly to me.

Speaker 2: 23:48

James Lewis is a favorite author of mine, like he can make me tear up like almost like on spot. But that quote for me is like my life in a quote. I feel like, oh my gosh, like everything about life has been hard, but that doesn't mean your life and the cards you play and the hand you play cannot be extraordinary. So I feel like even though I've had a lot of hardships doesn't mean that my destiny is any less than anybody else's.

Speaker 3: 24:19

Your story your journey, your strength, all of the above. Spending this time with you has been amazing. Getting to know you has been amazing and your journey is truly inspiring. I can't wait for our listeners to hear just you and to experience you and all that you have to share. Where can they follow you? Where can they connect?

Speaker 2: 24:43

You can follow just me on my Instagram at Ashley Spalla, but you can also get on Miles for Hips and support our Miles for Hips. I'm our information and resource chair and I'm always doing different activities with their nonprofit. I'm always available that way, or friend me on Facebook. Same thing, ashley Spalla. I'm always looking to message or have new friends, so I'm on Instagram a lot, so Messenger is always a great one.

Speaker 1: 25:12

Before we close, I want to do something kind of fun with you, and I think you're going to be up for this. Are you ready? Ready, unusual choices? If you could be any animal, what would you be? Oh, a wolf.

Speaker 2: 25:27

Oh, why would you choose that? That they can be anything from lone hunters to wolf pack, so I like that about them. They can be like.

Speaker 3: 25:36

They're adaptable and they're beautiful that suits you. I love that. I love that, I love it oh, guilty pleasures.

Speaker 1: 25:45

What is your favorite guilty pleasure tv show?

Speaker 2: 25:48

man, let's see. Big bang theory is my tv show and movies are harry potter. For sure my mom gets tired of them playing on. They're like my comfort, it's like my comfort movie from, like my kids show like. So anytime there's like a surgery or recovery or hospital stay, which is a lot, so Harry Potter's on, so for sure.

Speaker 1: 26:13

Okay, let's do this one Celebrity crushes. Which celebrity would you want as your best friend For Sendsworth?

Speaker 2: 26:20

Thor Hands down, yes, the Hammer like hands down Thor all the way, and he seems hysterical too, like he seems like he would be hilarious I want to make sure of somebody that's delicious and funny.

Speaker 1: 26:37

Yes, exactly okay, andy, I want to ask you the same question. Okay, what question go? Which celebrity would you want as your best friend hands down?

Speaker 3: 26:46

samuel jackson he'll keep. He'll give it to me real, like he will. He will not hold any punches. He's like here's the, the raw. Do it like what are we doing? Get it together also. He's funny, right. So if you just imagine him walking around narrating my life, that would be so amazing, that would be the dopest day of my life if he just walked around and narrated my life. He could be my anger translator. He could be my peace negotiator. He could be all kinds of things.

Speaker 1: 27:17

That should be the question. We should ask everyone who they want to narrate their life. Yes, samuel L.

Speaker 2: 27:23

Jackson hands down Either Morgan Freeman or Liam Neeson because their voices are amazing.

Speaker 3: 27:30

I would say Morgan Freeman, but he would put people too calm. What if I'm?

Speaker 2: 27:34

angry. I need the emotion, I need the emotion.

Speaker 3: 27:37

I need the emotion of how I'm feeling, especially at doctor's appointments. Can you imagine that Samuel L Jackson is your bestie and advocate?

Speaker 1: 27:45

at a doctor's appointment. So you have Morgan Freeman when you're happy and things are calm, and then you switch it up when you're not Correct.

Speaker 3: 27:55

Yeah, you have Samuel L Jackson when it's Hands down.

Speaker 1: 27:58

Both of mine, I think, are delicious, that's why I work the day Delicious, but they're funny too, and you probably won't be surprised because I feel like I've told you these before. Dwayne the Rock, johnson yes, those arms, yes, that's my first one, and Kevin. Hart.

Speaker 3: 28:13

This guy's Kevin Hart, jenny's a 40-year-old Black man, and she dresses like a barbecue dad and she's it's okay, though it's okay, she loves it and I love her so good.

Speaker 1: 28:26

I let Andy in on my family inside joke about that, about how I was like I wish I was Kevin Hart. Yeah, that's so good. I think it's because I like people that are so different than me. I think that's what it is, because he's hilarious. I find him hilarious, I understand his humor, but I am not great at putting out my own humor, if that makes sense.

Speaker 3: 28:50

She's not good at relaying the joke. She can understand the joke, but she can't create or narrate, say, a joke. So by the time it leaves out of. Jenny's mouth, it's not as funny, and so she said I wish I was got my hilarious.

Speaker 2: 29:04

I'm just not hilarious, I just think I'm hilarious.

Speaker 1: 29:10

Like I'm hilarious in my own mind. I was gonna say the same thing. I think hilarious things all day long. Can I communicate them? No, exactly, and all the time I'm speaking with Andy and I stick my foot in my mouth, all the time I say all the weird things like I, what did I say to you, the other, something about I'll do you and I'll do this.

Speaker 3: 29:29

I said I first I'll do the church and then I'll do you later. And I was like nope, nope, nope, nope, nope. And though, if we could just pause for a second and reword that, no, ma'am.

Speaker 1: 29:40

Yeah, do do my work at the church and do a recording with you.

Speaker 3: 29:44

Yes, yes, the full the complete thought. The complete thought matters Like grammar and punctuation. The complete thought matters because too much was left out in context.

Speaker 1: 29:55

Okay, it was such a pleasure getting to know you more, Ashley. Thank you guys and listeners, go talk to her. She's super fun. Yes, please, she's sweet. Reach out to her. She'll talk back to you in a