¶ Introduction to Spoonie Sisters
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 .
Hey , thank you guys , Thanks Jen , Thanks Andy . I'm so excited to be here .
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 .
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 . 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 .
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 . 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 .
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 . 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 . 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 .
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 .
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 .
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 ?
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 .
You just deal with it .
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 .
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 .
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 .
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 .
Yeah , for sure .
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 .
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 . 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 .
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 ?
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 .
How do you stay motivated through all of those rough ?
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 .
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 .
For a nurse yeah buzz nurse .
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 ?
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 .
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 .
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 .
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 ?
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
¶ Meet Ashley Spala: A Journey Begins
at the moment , so it's the one I'm merging with .
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 . 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 ?
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 . 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 . 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 .
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 .
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 . 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 .
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 .
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 .
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 ?
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 .
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 .
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 .
They're adaptable and they're beautiful that suits you . I love that . I love that , I love it oh , guilty pleasures .
What is your favorite guilty pleasure tv show ?
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
¶ The Start of a Decade: From Basketball to Surgery
Harry Potter's on , so for sure .
Okay , let's do this one Celebrity crushes . Which celebrity would you want as your best friend For Sendsworth ?
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 .
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 ?
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 .
That should be the question . We should ask everyone who they want to narrate their life . Yes , samuel L .
Jackson hands down Either Morgan Freeman or Liam Neeson because their voices are amazing .
I would say Morgan Freeman , but he would put people too calm . What if I'm ?
angry . I need the emotion , I need the emotion .
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 ?
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 .
Yeah , you have Samuel L Jackson when it's Hands down .
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 .
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 .
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 .
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 .
I'm just not hilarious , I just think I'm hilarious .
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 .
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 .
Yeah , do do my work at the church and do a recording with you .
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 .
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