38. Refusing Limits with Allysa Seely

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00 

Jen Milner 

Welcome back to bendy bodies with the hypermobility MD, where we explore the intersection of health and  hypermobility, focusing on dancers and other aesthetic athletes. This is co-host Jennifer Milner here with the  founder of bendy bodies, Dr. Linda Bluestein.  

00:15 

Linda Bluestein 

Our goal is to bring you state-of-the-art medical information to help you live your best life. Please remember to  always consult with your own healthcare team before making any changes to your routine.  

00:24 

Jen Milner 

Our guest today is Alyssa Seely. Two time paratriathlon gold medalist, fresh from her gold medal win in Tokyo.  Hi Alyssa, and welcome to bendy bodies.  

00:47 

Alyssa Seely 

I am excited to be here this morning. 

00:49 

Jen Milner 

Alyssa, before we go any further, can you give us a little background, both into your health journey and your  competitive career?  

00:57 

Alyssa Seely 

Yeah, I was diagnosed in 2010 with Chiari malformation, basilar invagination and Ehlers-Danlos syndrome  after about two and a half years of seeking a diagnosis and being in and out of the hospital growing up, I was  very active kid. I did every single sport my parents could put me into, T-ball soccer, baseball, karate,  gymnastics, dance, you name it. I did it. I just had a ton of energy and loved being active. I finally found my  place in competitive dancing and in competitive running. That is where my career in triathlon stemmed from. In  college, I switched from running to triathlon and I have not looked back.  

01:52 

Jen Milner 

I love the juxtaposition of competitive dancing and competitive, what most people consider a sport and instead  of dance, I love that you did both of them and I'm sure enjoyed both of them and got something different from  each of them. That's very cool. Yeah.  

02:06 

Alyssa Seely 

I, absolutely believe that every sport, every activity has something to teach you as a person, as a human and as  an athlete. My strength is the run in triathlon. It has been described as my deadly weapon many times because  that's typically where I finished races and put my competitors behind me, but I do credit dance for that. Learning  how to use my feet at a young age. Now, my foot has been really helpful in running. They're very similar  mechanics in the way you use your foot when you're dancing, jumping, gliding across the stage and when you're  running and if how to use your feet properly prevents injury, and definitely helps your running form.  

02:53 

Jen Milner 

That is a great connection. I often hear dancers are encouraged to start as a cross training conditioning for the  aerobic aspect of it. Something that they don't think about very often is that they're formed for running needs  just as much attention as their form for dancing. So I love that. You're talking about how you could take the  training that you did in dance and add it to the training that you needed for running. It's not just going out there  and seeing how fast you can go, but there's technique to it. There's biomechanics to it. You want to apply that  same attitude of that towards running as you do towards dancing, or you should write for everybody out there  trying to do more than one exercise.  

03:34 

Alyssa Seely 

Absolutely.  

03:36 

Linda Bluestein 

It's a great thing to do because we know that's being more diverse is tends to better for your body. Well, Alyssa,  you are a multiple gold medal athlete, as well as someone with multiple complex medical conditions, including  Ehlers Danlos syndrome and others, as you've already mentioned, but how have you been able to compete at  such a high level, despite having so many health challenges,  

03:57 

Alyssa Seely 

Sheer stubbornness, and a team that I have built over the years that has supported my dreams and been willing to  improvise, to look outside of the box and to come up with solutions when problems arise.  

04:15 

Linda Bluestein 

That's fabulous. You mentioned about being diagnosed with Chiari malformation, basilar invagination, and  EDS. Can you walk us more through that diagnostic journey and how those conditions impacted you? 

04:29 

Alyssa Seely 

Yeah. I, after my diagnoses, looking back and when doctors started asking questions, I've had symptoms my  entire life. I've dislocated joints. My entire life I've subluxed drinks my entire life as a kid. It was my, like what  we called stupid human trick. I would just like pop my joints out and pop them back in. People thought it was  disgusting and hilarious all at the same time. It just was what it was like. I had no idea that was something that  was wrong. I was obviously as a dancer, I was always very flexible. I did gymnastics as well. I never had to  work for my flexibility. It was super easy sometimes being the center of some jealousy because of it, when  others were working really hard to get their splits. I was like, okay, this is boring. Let's do something else. As I  grew, my symptoms got more severe with time and I would say, or some of the secondary diagnoses became  more evident.  

05:27 

Alyssa Seely 

We think I'd probably had gastroparesis my entire life, but it became pretty evident about third grade and  continued to get worse throughout high school and into college. Because I was a dancer and a runner, it was  automatically an eating disorder. It was, there was nothing actually wrong with me and they decided this with no  testing. In high school, when things started to get really bad, my pots started to get worse. I would pass out,  standing up. I would, you know, shake in practices. I wasn't able to eat enough. I was throwing up. I just hit it  from the world. Doctors didn't believe me. I wasn't going to tell anybody else about it. I was just going to keep  my head down and I was going to do whatever I could to accomplish my dreams. It was finally in college that  things got to a breaking point.  

06:11 

Alyssa Seely 

I was having seizures. There were times when I would stop breathing and that's when I could no longer hide that  something was truly wrong. I was in and out of the hospital being gaslighted by physicians and told that there  was nothing wrong with me. It was all in my head. I was doing it for attention and a whole laundry list of other  excuses. At the time I was working for a doctor and she did believe me. She saw it with her own eyes. One day  we sat in her office at the end of the day and she called my neurologist and was like, I'm not getting off the  phone with you until something is done. Something is very seriously wrong. This is not psychosomatic. This is  not in her head. She's not attention seeking something is wrong. She's like, in any ways, nobody can  psychosomatically stop breathing.  

06:59 

Alyssa Seely 

That is not a thing like that does not happen. He continued to ignore it and do nothing. I tried to continue on with my life. I was a collegiate athlete. I was a full ride scholarship student and in college and I was doing the  best I could to just make it by. It was the doctor I worked for. A PA who worked in her office is actually the one  who was suggested Ehlers Danlos syndrome. It was actually pretty early in these two and a half years. I  mentioned earlier. At the time, I mean, this was 15 years ago. Very little was known about it. Very little was  known about his comorbidities that any of this was related or that it was anything more than just like, okay, my  joints dislocate. So, although I had that diagnosis, it wasn't really helpful in getting any help at the time.  

07:48 

Alyssa Seely 

After being in and out of the hospital for years, it's getting no answers from doctors. I finally was at my wit's end  and I pulled all of my medical records from the hospital and started going through and page by page and  Googling anything. I didn't know, searching answers myself. Fortunately I had started at the most recent  medical records when I should have started at the beginning. I got all the way back about 7,000 pages and saw  on my very first CT scan that the Chiari malformation was there. The neuroradiologist who read it suggested  being referred to neurosurgery immediately, that was never done. It was ignored by the neurologist I was seeing.  He just continued to tell me there was nothing wrong with me and that it was all in my head. I did a little Google  search just to find somebody who treated Chiari. I called there was a neurosurgeon and happened to be in the  town I was living in at the hospital that I was being seen at.  

08:53 

Alyssa Seely 

He was one of the leading experts in the world. And he was a pediatric neurosurgeon. I was an adult at this time. It wasn't sure he was, would take me, but I was hopeful that there would at least be some advice or answers. I  called his office. I just asked, Hey, I see, I saw this on my CT scan and there's multiple other MRIs that confirm  it. Do you have any suggestions? The person on the phone is like, hold on a second. Let me get you the nurse. I  speak with the nurse and she's like, what? Now, tell me exactly what your stand says. I read it to her, the  herniation and everything. She asks about my symptoms, the seizures, the episodes where I would stop  breathing, the passing out all of that. And she's like, hold on. Just one moment. She puts me on hold me not  thinking anything of it, because you're put on hold by doctors all the time.  

09:41 

Alyssa Seely 

Right. She goes and gets the neurosurgeon. He answers the phone. He's like, can you send me those reports right  now? I'm like, well, they're in your hospital system. Like you could pull up the images and you're like, oh,  perfect. He pulls them up on the computer and he's like, how soon can you come in? I saw the neurosurgeon that  day and within days I was having surgery. Many of my symptoms were relieved shortly after that point. Wow.  The journey then continues at that point. I still didn't have diagnosis of pots or gastroparesis, or, and or any of  the secondary diagnoses. Those have kind of come over the years, but we, I've had symptoms for years and  years, and this has been going on most of my life, if not all of my life. That's a quick little glimpse into my life.  

10:27 

Jen Milner 

That is a story that is number one, amazing. Number two has so many elements that we hear over and over again  from the people that we work with, the whole you've had these symptoms, your whole life, but at first may not  have been aware of it because it just seemed like a cool thing, right? The cool party trick or whatever it might  be. As you hit your teenage years and you start to kind of hit that wall, you're such a high level performance  athlete that you just end up medically masking it and continuing to move forward. You're trying to get help and  you're trying to get information and you feel like you're not being heard. You feel like the doctors don't believe  you we've had other people on who have had gastroparesis that had said the same thing. Well, you were a dancer. You must have an eating disorder.  

11:14 

Jen Milner 

To go from that, to having to be your own medical detective, I don't know that I've talked to someone else who  has gone through every page of their medical records and gone to that depth of discovering your Chiari,  malformation yourself, and getting the physician on the phone in one phone call and getting the help that you so  desperately needed. What an incredibly encouraging story for other people to hear, just that you have been on  this journey. The struggle that you went through is one that is mirrored by so many others. It's really impressive  what you have done advocating for yourself. Another piece that's really familiar to us is that you had one person  that believed in you had one medical doctor who said, Hey, I'm not sure about this. I think, I think you're not  lying. I think there's something going on. Just having that one person that kept you going and helped you and  encouraged you and pushed you forward.  

12:11 

Jen Milner 

That's an amazing story.  

12:13 

Alyssa Seely 

Yeah. I mean, I was desperate. I was being told that one hand that there was nothing wrong with me, but the day  I actually pulled my medical records, I was in that neurologist office and he walked in, I was 19 years old. I was  sitting by myself in this doctor's office and he walks in and he says, with the way your neurologic symptoms are  progressing, you'll be lucky to make it to October. This was an, this was August and he just walked out of the  

door and that was it. Like, that was the end of the appointment. I just left and I was like, and I didn't even know  what to make of it because here, this guy is telling me I'm crazy, but there's nothing wrong with me. He had  gone to the lengths that while I was in the hospital, he had one psychiatrist come see me.  

12:56 

Alyssa Seely 

The psychiatrist had said, I don't really think there's anything here. That's psychiatric. That was just the general  psychiatrist who was on call. He then decided that he was going to have his buddy come in and, after I think he  had another psychiatrist come in and then finally he was going to have his buddy come in because he didn't believe the first two when they said that neither of them thought there was any psychiatric problems and that it  wasn't, psychosomatic. I don't know if it's his ego, I don't know what it was, but so then he had his buddy come  in and, try to, I think essentially he tried to have his buddy be like, oh yeah, it's definitely a psychosomatic. I  was just like, I'm not seeing another person, like we've been through this. Unfortunately that was probably fuel  to his fire of like, oh, well, if you're unwilling to see people, like, if you're refusing to see a psychiatrist, even  though I had already seen to it was just a really bad match.  

13:48 

Alyssa Seely 

I was trying to figure out like, what is this guy's motives like, he's, you're saying I'm crazy. That I'm making all  of this up for attention. Now he's telling me if my symptoms keep progressing, like, is he just trying to scare me  out of this or is this real? I was desperate and I pulled all of my medical records and figured it out on my own. I  was, I was sick of being treated the way I was getting treated. And, I was, I had worked for a doctor for multiple  

years. I understood how medical records work. I do know a lot of, I didn't know, a lot of medical jargon. I  obviously do not have an MD and I would never claim to have an MD, but I also have an education in science  and knew how to research. I think that was the biggest thing that helped lead me to finding the answer and  finding a correct answer was having the education, the know-how and the ability to research.  

14:37 

Jen Milner 

Well, and this is an excellent example of taking a negative situation and turning it into a positive that you were  in that position and you were able to do something with it. It, you, like you said, to go get your medical records.  I imagine that there are lots of challenges for you in your career as an athlete that other people don't have  because of your health issues. I know that there have to be some really hard times, but I'm wondering, are there  ways that those health issues have turned into a positive situation or that you have used them for positive?  

15:13 

Alyssa Seely 

Absolutely. It was only about a year ago that I have been public with all of my, or with the complex chronic  medical or illnesses, mainly because I had thought for so long people would kind of look at me and be like, oh,  like, she can't be a competitive athlete. She has all of these other things going on. The reality is it has made me  the strongest person, the things that I've dealt with my entire life being told, I can't being told that this would  never happen. That would never happen. Not, I can't do this, or you can't do this. You can't do that. You can't be  an athlete. You can't, you can't. And I found a way. So, it's kind of, for so many years hiding it taught me how to  mask pain. Some of that came from being an athlete prior, to all of this, but then it has kind of reinforced that.  

16:09 

Alyssa Seely 

I'm on the race course, I've had so many competitors say to me, we never know like how you feel, because we  cannot read you. Like, we don't know if you're dying. We don't know if you're hurting or we don't know if  you're just out for a Sunday stroll, like your face does not tell us anything. And, I think that's really real. I've  learned to push through the pain, learn to push past the pain. As an athlete, I said last year when I was going  through some other challenges or health stuff that pain during any workout or any race would never match what  I've been through at other times in my life. I remember that every time I'm racing that, and I, I just am able to  push myself so much further in so much harder because of it. I, my leg was amputated below the knee back in  2013, AF because it is assumed that because the Chiari malformation advisor at invagination was left for so  long, the pressure in both my brain and my spinal cord during that time started to cause damage to both the brain  and spinal cord or spinal cord itself, which left me with some long-lasting neurological effects.  

17:24 

Alyssa Seely 

One of which is spasticity and essentially my muscles. Although my joints are very loose, my muscles would  have gotten very tight because they don't get the correct neurological signals anymore. It was a combination  between the spasticity and Ehlers-Danlos syndrome. The spasticity was so bad in my left, but that it was  subluxing my ankle, 24 hours a day, seven days a week at times dislocating it. We tried bracing for years. We  tried electrical stimulation. We tried literally every single thing we could think of the spasticity would break the  braces. The electrical stimulation worked for a little while, but eventually it started to cause deterioration in my  knee pain, in my hip and my back. I wasn't able to live the life that I wanted to live, which was being active,  being able to take my dogs, hiking, going, running with friends, or, any of the other active things I love to do. 

18:23 

Alyssa Seely 

I was a competitive athlete and that part of me didn't change different diagnoses. I had basically been told the only option left was surgical. I had met with about, I believe eight different surgeons. Almost everybody had a  different opinion. Most of the opinions were their ideas of what they could do to try to save my leg. And, these  were not proven surgeries. These were like, well, we can try this and this. If it doesn't work, then we'll just fuse  your ankle or we'll just fuse your ankle and your knee, or, and so I decided to start asking them what the success  rate of these surgeries would be. Some of them involves multiple surgeries up to five or six. Some of, I mean,  we're talking years of time. Some of them involve external fixators and all of these things. I'm like, if I'm going  to go through this, I want to know what the success rate is.  

19:17 

Alyssa Seely 

And, and so when they start describing the success rate, I'm like, no, I don't want to know your success rate.  This is how I'm basing. This is what I'm basing success off of. Am I going to be able to go hiking with my dogs?  Am I going to be able to keep up with, hopefully my future kids, am I going to be able to enjoy an active  lifestyle? I made them look at success through that lens and tell me what success would because this was about  my quality of life. This is my life. This isn't then, doing some new surgery so that they can put it in a journal and  use me as a lab rat. This was my life. Once they started looking at success through that lens, they were like, oh, I  mean, 5% or like, 3% and you can find something else to do with your life.  

20:06 

Alyssa Seely 

And I'm like, you're right. I definitely don't have to be a competitive athlete, but I'm always going to be active.  Like you can't take that away. That is part of who I am and not being that person would destroy me. It was  funny because the very first surgeon I had seen actually a year and a half prior to seeking surgical opinions had  said, the best thing you can do is amputate you'll have a better life, better quality of life. And I was just like,  what? I mean, I just came here because my foot's a little not stop. Like, what are we talking about? I left his  office and like never kind of looked back. Until a year later I was getting these surgical opinions and I  remembered what he had said. I saw him again. I also one other surgeon in these eight people that I saw said the  same thing.  

20:58 

Alyssa Seely 

Like, we can try to save it. Like, if this is about keeping your foot aesthetically, we can try to say that we can do  all of these things. If this is about living the life that you want to live, amputation is your best option. That is  what we moved forward with.  

21:16 

Linda Bluestein 

That's absolutely amazing. In my 25, 30 years of practicing medicine, you're the first person I've ever heard of  or met or anything that had amputation for that reason. We always worry about Phantom limb pain. You already  having EDS, I would think that would also be a concern. That's really fascinating that you approached it in the  way that you did and said, this is what I need and that they were able to figure out that was the best option for  you. That you were able to then compete at the level that you've been able to compete at, given all of these  amazing things that you've been through.  

21:57 

Alyssa Seely 

Yeah. I mean, when were talking surgical options, elite athletics was off the table. It was not something that was  considered in the decision I was making. And we knew surgery was necessary. My foot was losing circulation.  It was getting sores on it and infection. We knew no matter what surgery was going to have to happen. I think  for myself, I made the best decision possible. It had been three years that we had been trying everything we  possibly could to get my foot back into its socket, to get circulation, to make sure that it was not going to cause  damage to my knee and my hip. Honestly, I have never second guessed the decision. I have never even, the only  time I ever think about it is when somebody is asking me about it on podcasts or for interviews or whatever it is  because, in four weeks I was walking and eight weeks I was running and had my life back after three years.  

22:56 

Alyssa Seely 

And, and to be fair, that is not normal. That is not a normal timeline. If anybody hears that is experienced  amputation, please do not expect that. I was like, I don't know, just like some freakishly, huge unhuman thing. I  don't know what happened, but yeah. Let's not set expectations based off of that please.  

23:14 

Linda Bluestein 

Oh my goodness. And, and you obviously are an incredibly strong-willed person, extremely motivated having  an incredibly positive attitude. I imagine that there's been some pretty hard days, both physically and  emotionally. Can you share any tips for our audience or strategies on what you do in order to get through some  of those hard days?  

23:33 

Alyssa Seely 

Yeah. I think there's a few things that use the first being that the days that I'm just like not feeling it, that, things  are not going well. I have learned that for myself, my symptoms are typically better if I am up and moving  around, my blood pressure does better. If I'm not laying in bed for extended periods of time or not sitting down a  lot. I do try to get up, get active and there's things that I've done long-term to control symptoms, but they're also  things that I do in the moment. Some of the long thing, long-term things that I have found to be very helpful. I  absolutely understand and know this is not an easy journey, but one of the best things I did for myself, and one  of the hardest things was to put on muscle mass, having problems, getting nutrition. It was really hard for me to  keep on weight, but being able to put on muscle mass has protected my joints.  

24:28 

Alyssa Seely 

Also specifically putting muscle mass on my lower body has helped significantly with my symptoms of pots.  There is a caveat to this. It has to be kept up. If I stopped training, if I stopped working out, which our bodies do  need rest. I lose weight very quickly. My symptoms come back very quickly. For example, after Tokyo, this  year, we rushed into Tokyo. You had mentioned I had endocarditis. October of 2020, the games were in August  of 2021. I had multiple reactions to medications and other things. So it turned into a mess. Long story short, I  was in the hospital from essentially October to the middle of February and was not doc training until the middle  of March. I had to qualify for the games in June and compete in August. So it was a very condensed timeline.  

25:24 

Alyssa Seely 

So when we jumped in full force. There was no like build into exercise or anything like that. My body was in a  state of stress constantly. From this time we started work training to after me finishing competing. And so my  body needed a break. I had to give my body a break. It needed it physiologically. I needed it mentally, all of  that. I for came back after Tokyo and I decided I was going to take some time off and only do what my body felt  like doing, which was not much, it was walking the dogs. I was going hiking with friends. It was not swimming,  running, biking, lifting, or any of the above. And I lost seven pounds. I lost muscle mass and all of my  symptoms returned very quickly and very harshly ones that had been controlled. Our bodies do need rest, which  is hard.  

26:13 

Alyssa Seely 

It is hard to get back into it every time. Being active, adding that muscle mass definitely has made a huge  difference in my symptoms. The other thing that I do day to day is when I'm not feeling it, I don't want to get up.  I tell myself I have to start whatever it is. For me, it happens to be a workout because that's what I do for most,  for work. If I wake up and I'm like, I just don't want to get out of bed. I'm not feeling good. I am dizzy. I'm  whatever I tell myself, you have to get up, you have to start. If in 15 minutes after starting, you still feel like  this. You can go back to bed and you can do whatever you want. The rest of the day thing is usually within those  15 or 20 minutes, like your body's up and moving your endorphins, start going.  

26:52 

Alyssa Seely 

I'm like, oh, I actually don't feel as bad as I thought I did because getting up, getting my blood pressure up just  makes me feel better. That's one of the things I do. Even though I'm discussing a workout right now, I do it 

Page 7 of 13 

Episodes have been transcribed to improve accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us as soon as possible. 

Transcript for Bendy Bodies Podcast, Episode 38: Refusing Limits with Allysa Seely 

really with anything. If I have calls in the morning or whatever it is, I will try to start it. If I start feeling better,  great, if not, I give myself some grace and my body, the rest that it needs. I try really hard to listen to my body,  but also make sure my body's not lying to me. If that makes sense or deceiving me, I guess, would be a better  word, because sometimes it's hard to read what our bodies are telling us. What exactly does it need? Does it  need rest or does it need something else?  

27:40 

Jen Milner 

There's two things from that I love is that number one, you can do more than you think you can. Right? Well,  more than two things. I'm not going to number them first. You can do more than you think you can. I don't want  everybody listening to think, well, I'm never going to win a gold medal. She's just an amazing superhuman,  Alyssa, you are an amazing superhuman, but you're also an example of how you, anybody can do more than  they think they can sometimes. Right? Giving yourself that, just start, like, just start it. We can make a decision  further down. If you need to, we'll show ourselves grace and we'll go back to bed. I think that's such an  important point to make. I love what you say about listen to your body, but also make sure your body's not  deceiving you. It's hard to learn the difference in that, right?  

28:28 

Jen Milner 

When you need to take that rest time, it's really important to listen to your body and take that rest. Sometimes  your body is saying, just stay in bed when your body really means I need to move. I just don't want to. So those  are all really great tips. Thank you for that.  

28:44 

Alyssa Seely 

Yeah. I think for myself personally, I've always been the type of person that's just like push, push. I've talked to  other people that are like more cautious than I am and are like, my body needs rest. It's telling me I need a rest. I  rest, rest. It, although these are two opposite reactions, I think they're exactly the same. It's us not understanding  our bodies. It has taken years to learn that pushing through everything is not going to accomplish what I want it  to accomplish, but also doing nothing is not going to accomplish what I want to accomplish. We have to find the  

middle about the middle ground. We have to learn how to communicate with our bodies and we have to learn  how, and when it is appropriate to push through uncomfortableness and when to offer ourselves grace. Yes,  

29:34 

Linda Bluestein 

Definitely. I think that's all so important. Another thing that I wanted to dive in just deeper when you talked  about muscle mass, I could not agree more when it comes to pots symptoms. I, that's definitely something that I  see in my patients as well. I hear so often people say that they have difficulty building muscle mass and  personally, as someone also that has EDS, I have tremendous difficulty putting on muscle mass. I would love to  know how, what strategies you used that were successful for you to build more muscle.  

30:10 

Alyssa Seely 

Yeah. It comes to building muscle, I was hesitant at first, mainly because I knew how hard it was for me to gain  weight, right? Like my body likes this weight and it doesn't matter what I do. Like this is the weight my body is  going to be. It is going to always tend to lose weight over gaining weight. It's been like that ever since I was a  child. We had discussed adding muscle mass and I discussed this with my athletic team, not with my medical  team, I was hesitant because I was like, I don't know how we're going to do this. I, getting into calories, all of  that. I do work with both the clinical dietician and a sport dietician. They work in tandem. I do think anybody  thought does have gastro-paresis or trouble putting on muscle mass. Having a clinical dietician is helpful. I have  a sport dietician as well because they just specialize in sport itself.  

31:07 

Alyssa Seely 

Right? She, the sport dietician's job is to make sure that I'm feeling my body appropriately for sport. The clinical  dietician is like, okay, this is the recommendations of what you need from the sport dietician. So how do we get  that? If I was not only athlete, I wouldn't eat, I would not eat a sport diet. In a very long-winded way, all I'm  trying to say is that a dietician is helpful in this process. A clinical dietician would be perfectly capable of  helping you put on muscle mass. That is the first thing is if we don't have an excess of calories, then it is not  possible to gain mass. That is just how the body works. If there's no building blocks, there is no building. That is part one, part two is with the instability in my joints, with hyperextension, with all of my subluxations and  things like that, we started at the ground level, please do not just like go pick up a 30 pound weight and expect  to like achieve something here.  

32:05 

Alyssa Seely 

All you're going to achieve as an injury. When I said we started at the ground level, like we started with no  weights at all. We started with just body movements, learning how to move my body in a safe and healthy way,  learning proper range of motion. Those are things that you have to accomplish first, if you do not have that,  you're just going to cause an injury. This is not just for people with EDS. This is literally for everybody like the  strength and conditioning coach I work with. He does this with every single athlete he works with because the  main purpose of strength training is not necessarily getting stronger. It is keeping your joints and your body  healthy. If you don't know healthy ranges of motion, how are you going to keep your body healthy? So that is  step one. There are a lot of resources.  

32:50 

Alyssa Seely 

If you don't have access to a team, I do understand I have access to more people given my career choice, but if  you don't have access to a team, there are a lot of resources, online videos and things like that. Just make sure  that the ones, the resources you're looking at are coming from reputable sources and are not just some fitness  guru, like showing out anything he can for views and likes. That is the best advice I can offer, but there are good  resources online. I'm actually currently working on a YouTube series to hopefully help people that don't have  the resources I do with some of the things I've learned. The next step is adding in very lightweight that can be  done with resistance bands. You can get a set of resistance bands off of Amazon or eBay or wherever your  choose to shop for about $30.  

33:37 

Alyssa Seely 

That will take you a very long way. You don't need to spend thousands and thousands of dollars to make this  happen. With resistance bands, you start with the lightest one and you continue working on those same motions,  not extending past a healthy range of motion, making sure that you're engaging the correct muscles and, trying  to stay balanced on shied. Everybody has one weaker side, but we need to try our best to stay balanced. From  there we can start adding weight. People see, me posting videos on social media or this or that with weight that  took years to achieve, that did not happen overnight, that did not happen in a month like that literally happened  in over years. That's kind of step two, the two to this whole process, the good thing is they can be done at the  same time while you're working on your nutrition and making sure you're getting enough calories and protein  and all of that, you can be starting the range of motion and the band work and all of that as well.  

34:35 

Alyssa Seely 

It's definitely a current process, concurrent process that can be happening at the same time.  

34:41 

Jen Milner 

This just comes back to the, one of themes that is coming out of this conversation, which is that it's a long  process, right? The diagnosis might be a long process. The training should be a long process though for you. It  was a condensed process to get to the Tokyo games. Building muscle mass is a long process, figuring out the  balance that you need. There's just, there's a lot to that. One of the things I have wondered about for you that is  that since you are an elite athlete and you travel the world as a person with multiple medical conditions, how do  you prepare for international travel and making sure that you are going to have the support that you need? I  know that travel is a big issue for even our high level athletes that we work with to make sure they have some  medical stability, some team in place, or the ability to get the care that they need.  

35:33 

Jen Milner 

So how do you make that happen?  

35:36 

Alyssa Seely 

I like to call organized chaos and sometimes a little more guts than I probably should have, but no, it is hard. It is really hard. I, when I travel with a lot. I have my nutrition, I have my medications. I have everything that  normal people don't have. I can't just walk into a new a restaurant to get my nutrition. I have to bring it with me.  That is not easy, especially not easy when you're traveling across the world or when you are traveling  somewhere where you have to be for multiple weeks and your medications expire, or this happens, or that  you've got customs to deal with and everything you have to educate yourself. You have to be prepared every  time I travel somewhere, I make sure that I have researched what the local or if there's a local English speaking  hospital, if not seeing what translation services are in the country, not everybody has the same laws as the U S  that is something you have to realize.  

36:39 

Alyssa Seely 

ADA is the Americans with disability act. It is not valid anywhere else in the world. You need to know where  you're going. You need to know their customs, there's their laws and their rules to be the most prepared.  Everywhere I go, I do my research.  

36:57 

Alyssa Seely 

I, if there's an English speaking hospital, I have. All of its contact information just in case I need it. I, if there  was not an English speaking hospital, I know how translation services work. Do I need to hire a translator? Does  the hospital provide a translator? There somebody, within the race that I'm going to, that would be able to  translate? Do they have medical services, all of those things. I just try to be as prepared as possible. Things  happen. I've only ended up in a hospital in a foreign country once, which I think is a very good record, but I just  try to be as prepared as possible. I, and to just make sure you are advocating in a way that is appropriate based  on the customs and the traditions with the place you are traveling to. They, like I said, ADA is just American. I  think that is one thing that makes me cringe when people are like, but they're not following the laws.  

37:50 

Alyssa Seely 

I'm like, well, it's not their law. They don't have to follow it. Places don't have to be accessible. They don't have  to offer translators. They don't like, and a lot of countries don't. You have to be prepared to provide your own  services, but also advocate in a way that is effective because sometimes the way we advocate in America is not  going to be effective in other countries, you're going to be seen as rude, hostile, or combative. So you need to  know these things. Those are all very important things when you're traveling. Yeah, definitely. And, and  speaking of advocating for yourself, we know that there's a whole spectrum of hypermobility and associated  disorders and the Ehlers-Danlos syndromes are actually a group of 14 different subtypes. And then there's  hypermobility spectrum disorder. All these different types of conditions for these people who are listening and  are wondering about maybe it's advocating or any of the other aspects that we've talked about.  

38:48 

Linda Bluestein 

There anything in particular that you would like someone to know that has hypermobility spectrum disorder or  one of the Ehlers Danlos syndrome?  

38:58 

Alyssa Seely 

I think the biggest thing, I think there's a few things. I think the first is a diagnosis is not an end all be all. If  you're not getting a diagnosis, it's not the end of the world. I know some people can get very hung up in  sometimes yes, it does help mentally to know like, okay, this is what is wrong, but you can take steps to try to  improve your quality of life. Even without a diagnosis, believe me, most everything that I've done to improve  my quality of life has not come from a doctor. Actually, almost everything has not come from a doctor. A lot of  it is lifestyle choices that I've made personally. Like I had mentioned, it's putting on muscle mass, it's finding the  right balance between being active and giving myself grace. It's learning how to communicate with my body. It's  all of those things.  

39:39 

Alyssa Seely 

If you're in the process and you just feel like of trying to get a diagnosis and you just feel like you're not being  heard, take a step back and ask yourself is what I'm putting myself through going like, is this having a  diagnosis? It worth what I'm going through currently for my mental health, just to have this label, or if it's not,  maybe I can take a step back and start doing some of these lifestyle changes on my own. Maybe I can start learning, appropriate ranges of motion. Maybe I can start learning what my body wants from me and how best to  serve my body, to get the best out of my quality of life. Because dude, at the end of the day, a label is not worth  the turmoil and I was in it and I was in a position that I needed life saving medical treatment.  

40:25 

Alyssa Seely 

I just, you see people so frustrated cause people aren't listening to them and I'm like, it might feel better for five  minutes to have that diagnosis, but is it worth what you're going through right now? That's something we all  have to make. If it's a decision we all have to make individually, right? Maybe it's worth stepping back and  trying to make these lifestyle changes, giving yourself a break, giving your mental health a break and showing  yourself some grace. I think that's all it is because it is hard. I'm being desolate by physicians as hard being, not  being believed as hard, not all of those things. Let me tell you the diagnosis doesn't necessarily change that  either. You're still going to find physicians who don't believe you or don't believe in EDS or anything else that is  all still there.  

41:07 

Alyssa Seely 

So that's my first piece of advice. The second is that there are options to make our quality of lives better. I just  really hope nobody finds themselves in a pattern of self despair or destruction because you can live an amazing  life. I don't want this to come from like, oh, well you're a gold medal athlete standing on top of the world  because I've been in your shoes. The reality is we all have our gold medals and that might be like being able to  take your kids to the park. If that is your goal, that is an amazing goal. It is a worthy goal. It is a good goal to  focus on. Don't take other people's level of perceived success as what you can or cannot do. Every single one of  us has different goals, different aspirations and different lives. Some things mean more to others than they  would to ourselves.  

42:01 

Alyssa Seely 

There are ways to achieve what you want to, you have to have hope. You have to be willing to be uncomfortable  at times because it is only through being uncomfortable that we do make these gains and that's hard. Some  people are better at being uncomfortable than others, but all of us can do it. We don't have that power to, we just  have to find the strength. Usually is that is through focusing on a goal or focusing on something that we want to  achieve. If you are finding yourself in like despair or this pattern of self destruction or not wanting to do  anything, killing hopeless, please find somebody to talk to please find help. Please find a counselor. It is worth it  feeling better. Being able to enjoy life. That quality of life, like I mentioned earlier is the most important aspect.  If it's helpful to take some of the steps that I've done for myself, take to your doctor, like this is what I consider  success. 

42:56 

Alyssa Seely 

How do we reach it? Don't let them define success for you. Define it for yourself and be confident in how you  want to define it.  

43:04 

Jen Milner 

Okay. I feel like that was just an amazing 20 minute inspirational Ted talk in about two minutes of conversation.  So. That was really great because it feels like I can tell that everything that you are saying is coming from a very  real place of hard won information, right? This is not something that you read in a motivational book. This is  something that you have learned the hard way through walking this really long road, oftentimes in a very lonely  way. I think that comes through very clearly that this is hard won experience speaking, and it is amazing to me  how positive you are and how so many points in your life. You have moved with the assumption of, well, I'm an  athlete. I'm moving forward with that rather than going. Am I ever going to be able to walk again? You said, I'm  going to walk again.  

44:02 

Jen Milner 

What's the best way to do that? W well, what is the best way for me to move forward with the lifestyle that I  want and how can I make that happen? I'm sure that there have been compromises and I'm sure there have been  lots of disappointments, but you are an amazing example of what can happen if you move forward with a heart that is so very dedicated to finding the answers and giving yourself the life that you want. How can other people  find you and find out more about you? What is a good way for them to reach you.  

44:37 

Alyssa Seely 

This way? Really to find me is on social media, which I think is everything for most of the world nowadays, I  am not great at social media, but I'm trying my best. One of my biggest challenges is I tend to not like putting  myself out there in big ways, but I am trying to do better because I do know how many people are struggling  with things that I have struggled with. Hopefully by sharing my story, maybe adopter will see like, oh, this is  

incredible. Like maybe I should have my patients define what success is for them. Maybe I should stop defining  it for them. Or, a patient seeing like, oh, look like if this is how she got through this, maybe I can give that a try  or whatever it is. I'm trying my best, but check out social media on Instagram, on all of my handles.  

45:22 

Alyssa Seely 

I am triAlyssa and hopefully get in touch. I'm always happy to share advice. It may take me of time to get back  to you, given where I am in the world and things like that. I do try to communicate with as many people as I can and answer as many questions as I can. I would love to hear from you.  

45:45 

Jen Milner 

That's amazing and incredibly gracious of you. Well, you have been listening to bendy bodies with the  hypermobility MD today. We have been speaking with Alyssa Seely two time paratriathlon gold medalist, fresh  off her gold medal win in Tokyo, Alyssa. We thank you so much for taking the time to come on the Benny  bodies podcast and share your expertise with us today. It has been really wonderful to hear your story and learn  from you.  

46:09 

Alyssa Seely 

Thank you so much for having me.  

46:11 

Linda Bluestein 

It was great chatting with you. Thank you so much. Thank you for joining us for this episode of bendy bodies,  with the hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other  aesthetic athletes. If you found this information valuable, please share it with a colleague or friend and leave us  a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. If you want  to follow us on Instagram, it's at bendy underscore bodies and our website is www.bendybodies.org. If you want  to follow Bendy bodies, founder, and co-host Dr. Bluestone on Instagram, it's at hypermobility MD, all one  word and her website is www.hypermobilitymd.com. If you want to follow co-host Jennifer Milner on  Instagram, it's at Jennifer.Milner. And her website is www.jenniferhyphenmilner.com. Thank you for helping us  spread the word about hypermobility and associated conditions.  

47:18 

Linda Bluestein 

We want to hear from you. Please email us at info@bendybodies.org to share feedback. The thoughts and  opinions expressed on this podcast are solely of the co-host and their guests. They do not necessarily represent  the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and  should not be used in any legal capacity whatsoever. This information is not intended to diagnose, treat, cure, or  prevent any disease as this information is for quality educational purposes only, and is not a substitute for  medical advice, diagnosis or treatment. Please refer to your local qualified health practitioner for all medical  concerns. We'll catch you next time on the bendy bodies podcast.