Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Angel Ramos
Saturday, November 04, 2017
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with gamer Angel Ramos.
Dan: Welcome to this AS Life Live, which brings together people with AS, like myself, to share our stories to help inspire each other to be the best versions of ourselves. Today I’m meeting with Angel Ramos, who was diagnosed with AS at a young age, like myself, and we both share a love for video games, so I brought along this little toy we’re going to put it to use. Come join us.
Dan: Hey, whats up man?
Angel: Hey Dan, how you doing?
Dan: How you doing, great to meet you.
Angel: Come on in.
Dan: Alright, thanks.
Dan: So, I heard you’re a bit of a gamer.
Angel: I am, definitely.
Dan: PC, console?
Angel: A little of both.
Dan: A little bit of both? So I brought a little virtual reality.
Angel: I know what that is.
Dan: You do? All right, cool. I was thinking we could set it up, if that’s cool.
Angel: Yeah, that’s all right.
Dan: All right, cool. You want to grab that?
(Dan and Angel play VR game)
Dan: So, we’ve done the VR. What’d you think of it, by the way?
Angel: Awesome. That was much better than I was expecting.
Dan: Palms a little sweaty?
Angel: Yeah, I’m shaking, and it’s from how intense that was, yeah.
Dan: So I thought, you know, now we could talk a little bit about your AS, your history of it. I’m curious to know, when – you know, you’re pretty young. So when did it first, when’d you feel the first symptoms, what did it feel like, how’d you get diagnosed? Tell me kind of, walk me through that.
Angel: I specifically remember that I couldn’t walk as well as I normally could, and I wasn’t really sure why. And my parents, for a while, they thought that I had just hurt myself in some way, maybe at school. And, I mean, I thought that too.
Angel: And very slowly, over the next few years after that, the pain kind of started going to other places, and it started intensifying. It wasn’t just kind of a slight throb. It was much sharper, in my back and my hips.
Angel: It started getting intense and I couldn’t even do well in PE anymore, in school – it was just, it was getting in the way of it. And my parents at that point finally felt like, well, maybe it is weird, and we should take him to a doctor. And I got different diagnoses, like, the first doctor thought it was scoliosis. The, another doctor thought that I needed a new mattress… and I thought, like really, could it be that simple? Just a new mattress?
Dan: A new mattress, yeah.
Angel: And then it wasn’t until I finally got referred to a rheumatologist because all my bloodwork came back with high levels of inflammation. And then that rheumatologist finally tested me, and that’s how I got diagnosed, when I was…
Dan: And what age was that?
Angel: It was tough, at first. And there was a lot of anger. But that was quickly followed by relief, you know. ‘Cause once you understand what’s wrong with you, I think there’s less mystery around it and it’s not as scary, and I knew that my treatments were working. So I had a handle on it, and it was just, keep that going, you know, just take it one day at a time
Dan: So how does it, how does it affect, like, exercising now and things like that?
Angel: So as far as exercise, couldn’t really do much. Nowadays I do some yoga in the morning to stretch it out, because that’s when my back is the most stiff.
Dan: Now that you’ve kind of gotten your mind wrapped around routines and certain things that work for you, a plan to manage it with your rheumatologist, are you able to gain, are you able to do, you know, the things you love: hang out with your friends? What’s your life like now?
Angel: Yeah, definitely. Once I had a handle on it and I could adjust it, having a schedule is what helped me the most. Like specifically having time set aside for friends, and making sure that my body was ready for whatever it is that we did.
Dan: So how would you say, that living with AS has affected your relationships?
Angel: Well, I think I got very lucky, with having very amazing friends who were super supportive and they were always there for me, and definitely wanted to make me feel comfortable having the disease and being around them. So if that meant I couldn’t join them on a hike, that wasn’t a big deal or they wouldn’t scold me for it or make me feel bad for it and they were also just as happy hanging out with me, playing video games, watching movies. And my romantic relationships, it definitely took a toll a little bit at first, because again I wasn’t as informed originally so it weirded people out if I ever told them, I have such and such. They looked at me like, I don’t know what that is, oh well I guess it’s not important. And of course it’s incredibly important to live with this disease. Along the same lines, you know – having girlfriends who liked to be outside all the time was definitely a challenge. Um, and it definitely psychologically made me feel like I wasn’t good enough for a lot of them just because of that. But again, I think that I got very lucky for the most part ‘cause I’m in an amazing relationship and this girl is phenomenal. She really understands, she really supports me, and you know – I’m there for her too and it’s important that we balance each other out and she knows that I’m gonna have bad days and good days and she will too, and we have to be there for each other on those days.
Dan: Sounds like a keeper.
Angel: Yeah, definitely.
Dan: So if there was one word to describe AS and how it’s been for you, just one word, what would it be?
Angel: Challenging. It is a challenge. But because it’s a challenge, it’s something that I overcome every day, and it’s something that I wake up, I have it; I go to sleep, I have it. And getting through each day is a little victory for me.
Dan: That’s rad. That’s a great way to look at it.
Dan: So, okay, if AS had a face and it was sitting next to you right now, you could say something to it, but short, like a sentence, or maybe a word, what would you say to AS?
Angel: Let’s work together on this, cause we share this body.
Dan: Well, I think you found a great balance. Angel, it’s a pleasure, great to meet you, thanks for having me over.
Angel: Nice to meet you, of course.
Dan: Thanks for playing the video games.
Angel: Thank you for bringing it. That was awesome.
Dan: I had a great time hanging out with Angel, and now I’m going to head out to meet our next guest. In the meantime, you can go to ThisASLife.com for more information. Take care.
12/7/2017 10:03 AM
Thank you Angel & Dan!
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