Steff Di Pardo - Author and AS Advocate

Jayson:

Welcome to this first episode of The Axial Spondyloarthritis Podcast. That's right, the name has been changed as I referenced in the prior episode. And I'm very excited to have the first guest on of The Axial Spondyloarthritis Podcast after the name change, and that is Steff DiPardo, and Steph, how are you doing?

Steff:

I'm good, how are you doing?

Jayson:

Fantastic. Now you and I know each other, I would best describe you as not only a patient with ankylosing spondylitis a person with that, but also a strong advocate for yourself and others with ankylosing spondylitis, or axial spondyloarthritis. And making sure that everybody feels like their voice can be heard.

Steff:

Yeah, that's my goal. And to just make sure that nobody feels alone with this condition.

Jayson:

You wrote a book, and in that book, it kind of talks about your journey with AS. Tell everybody a little bit how you came to find out that you were diagnosed with this?

Steff:

Sure, so I, one day it was in February 2017. I woke up and I had severe right hip pain. I kind of didn't think anything of it. I figured, okay, I'll just walk this off. And then two weeks later, I had been working I worked at a restaurant at the time. So I was on my feet all day. And two weeks later, my manager comes up to me and she says, Steph, want you to go to the walk in clinic because we can tell the urine so much pain will give you the day off tomorrow, just to see like what's going on and get treated. And turns out that was my last day of work. I never went back because that just started the yearlong journey to my diagnosis of Ankylosing Spondylitis.

Jayson:

How old were you?

Steff:

I had just turned 21 years old.

Jayson:

So you were you were young?

Steff:

Yeah,

Jayson:

I hear so many and read so many stories of people having such a hard time getting diagnosed, talk a little bit about how you got in there, because I think you cover it fairly good. In your book, you didn't have a long journey to get diagnosed, did you?

Steff:

No, it was about a full year. I'm very thankful for that and I feel very lucky. So I had originally gone to the walk in clinic where they just said, we don't really see much going on, I'll give you a few days off work and you should be fine. Didn’t end up going back at all. And I had booked an appointment with my family doctor who told me you know, I can tell you're being honest, and you're in a lot of pain and you're struggling. So we're going to try and figure out what's going on here. You know, you just turned 21, this isn't normal. This shouldn't be happening. So she had referred me to neurologists and a rheumatologist. But here in Canada, it's it takes a while to see specialists. So about six months later, I finally got into see the rheumatologist who then sent me to get bloodwork done x rays and an MRI. And then four months later, we got the results and I was diagnosed.

Jayson:

So from your family doctor to when you saw the rheumatologist that six month window, were you given any pain meds? Were you anything to help you? Or were you just kind of said, wait and see.

Steff:

So she told me to try physiotherapy. I'm actually allergic to Advil, so

we didn't want to try any ad says the biggest thing that helped my pain was physio and like walking every day when it was warm outside.

Jayson:

Okay, no, you're in Canada. So that's not an every…

Steff:

Yeah,

Jayson:

There's plenty of days where you can't go outside is there?

Steff:

Yeah, just because, you know, I'm not a huge fan of the cold. So from like, May through to October, I was walking as much as possible, because I just noticed it started to help with the pain for more exercise.

Jayson:

Wow, that's, that's a shame. It's good that you knew you were allergic to NSAIDs. So that you can't, you know, you don't definitely want to mess with those once you receive diagnosis, so you're talking 10 months or so tell me a little bit about the thought process as a new do you remember what it felt like is to say, Okay, now I know what it is. What do I do?

Steff:

Yeah, it's funny the day I was diagnosed, I don't remember much from because it was like very overwhelming, like, I had finally had an answer. But at the same time, you have this condition for the rest of your life. So it was very overwhelming. You know, I was on Google; I was reading the pamphlet I was given. And I was, you know, relieved, but scared. And I didn't really know exactly what to do. I was 22 at the time had just turned 22. And it was a lot. It was a lot to take in at the time.

Jayson:

Fast forwarding a bit, you now have become such a strong advocate for folks with ankylosing spondylitis, or you know, non radiographic, the whole picture of axial, you know, in this so you and I met you work with a company called Health Union. And we're both on the website called ankylosingspondylitis.net. You do some writing on there. Can you talk about that?

Steff:

Yeah. So I had actually started my website in November of 2018. I would post blog here and they're about just the daily living with AS. And then in May of 2019, Health Union found me through my website, and they asked me to start writing for them for AS, and I was so excited, you know, because it was, you know, more opportunity to reach more people. And I've been writing for them for about a year and a half now. And I absolutely love it. It's like a little community of, you know, patients with AS. And we can all write about our journeys and their experiences and read about it as well and I love it.

Jayson:

Yeah, I think that's really good for people that are newly diagnosed, to be able to find articles written by people at the times when they were newly diagnosed, to kind of help put everything in place as to what they're maybe thinking, feeling, possibly going to experience all of it.

Steff:

Yeah and that was my goal with starting my website is that I realized when I was diagnosed and googling, you know, Ankylosing Spondylitis, I was reading into like, you know, Web MD, Healthline, medical webpages and I never found anything super personal. And kind of like people's experiences going through a so that's kind of what I wanted to create. And then once Health Union created, you know, a bigger picture of that it was just amazing.

Jayson

Yeah, it's really a great website. Now, for the listeners, I'll have a link in the show notes to all of Steffs writings that she's done on ankylosingspondylitis.net, as well as Do you still run your website?

Steff:

I do. But I don't post on there as often.

Jayson:

Okay, I'll have a link to it for everybody as well. So you can read the stuff that's out there. But as Steph said, in your you're active on the different forum boards, I see you posting different things and responding so people can find you really easy to talk with you.

Steff:

Yeah, I'm in a couple of Facebook groups. I'm on ankylosingspondylitis.net and then I use primarily Instagram, to reach people and talk to other people with AS and other chronic illnesses as well.

Jayson:

Yeah. What's your Instagram page?

Steff:

My Instagram page is Totallyfunkless.

Jayson:

Yes, it is and I will have a link to that in the show notes. I love the name that I just wanted you to say the name. I love the name.

Steff:

Thank you

Jayson:

Now, most importantly, what I want to talk about more in its entirety is your book, Just Breathe: Short Essays About My Life With A Chronic Illness. What led you to write that?

Steff:

So ever since I started writing the articles and blog posts, I had this idea that I would love to write a book one day figured that would be far in the future. I wasn't totally thinking about how to get that done or anything. And then after a support group meeting, I think it was in January, I went out for dessert with my friend and she mentioned one of her friends published a book on Amazon for free. And you know, you're totally able to do everything yourself. And she was like, you know, it's possible you can do it. And I started thinking about it. And I was like, I think I'm going to do this. I'm going to write a book. And I spent the next few months working on it. And now I have a book.

Jayson:

So how long do you think it took you to do?

Steff:

I would say, four months.

Jayson:

Oh, wow. So you really did knock it out?

Steff:

Yeah, I did. I worked pretty hard on it.

Jayson:

Awesome and it's all again, I'll have a link to the book in the show notes. It's available in Amazon as either a Kindle edition, or a hardcopy or not hardcopy but uh, you know, yeah, I guess hardcopy paperback edition. You've been diagnosed now for how many years? What year was that? That you were diagnosed?

Steff:

I was diagnosed in 2018.

Jayson:

So in that two and a half years, if you had to look back at the Steff that was diagnosed, what do you think you would tell her from the day of diagnosis? What would you tell her remember to ignore?

Steff:

I would tell her that her life is far from over. And I guess it's going to be okay. There's more to life than your diagnosis and just take it day by day.

Jayson:

Fantastic and it's so true. The one thing I really want people that are newly diagnosed to understand is that your life is not over. Your life might change, you know this, I know this. I used to love to go hiking out in the back country and fishing. You know, we're walking I can't do that anymore. But I can go pull off on the side of the road pull into a county park utilize different facilities that are built for folks that I'm a little more disabled than some and I can still do what I like just maybe not as aggressively as I liked. But that doesn't mean my life is over and sometimes one door closes and another door opens up.

Steff:

Yeah, and like you know, you can still do the things you love. It just might be a little bit different and you learn to adjust your lifestyle you find new things that you like to do and exactly a new door can open up and just like minded with a writing it You never know what's gonna happen.

Jayson:

Yeah, look is I've made so many friends you know, people like yourself through Health Union through the online boards. I'll get a letter from somebody or an email, I should say, that talks about how they discovered the show. Anyway, I never would have done that if it weren’t for Ankylosing Spondylitis, you know. So just the idea of doing this, it might not be what I imagined doing, you know, 35 years ago, but I love it now. And I wouldn't want to change anything now.

Steff:

Exactly, like I said, I was working at a restaurant, like straight from high school, I didn't go to college, I didn't really have an idea of what I wanted to do. And it's almost like, with as I found my purpose, which is amazing, you know, I, I never in a million years thought I would be a writer or write a book. And here I am. So, you know, things happen in life changes, and sometimes it's for the better.

Jayson:

Yeah, and you just roll with it. And now that you've done your first book, the second, third, fourth, or however many are much easier.

Steff:

Yeah, exactly.

Jayson:

So now, with that said, What do you see for the future? What do you see for your future? What are you hoping to accomplish going forward?

Steff:

So next up, I mean, in the next couple years, I would love to write another book, maybe like a more full length book mind sort of like a, it's around 84 pages. But I would love to write more and more as a more experienced life, because this one is about the last three years. So I'm only going to get more experienced, the more I live with it. So that's my next, you know, big goal. But in the meantime, I'm going to keep writing my articles, I'm going to keep advocating on Instagram, and kind of just spread more awareness everywhere I can.

Jayson:

Are you on Canadian disability?

Steff:

I actually am not. I have applied twice formally. I been denied twice and I'm currently on my third application, hopefully, Third time's a charm, but it is near impossible to get.

Jayson:

It's got to be your age?

Steff:

Yeah, that's what I'm thinking as well. And the fact that at the moment, my current rheumatologist does not want to fill the forms, so I just have my family doctor filling them out for me and I just feel like a specialist would probably do a little bit better, but he refuses.

Jayson:

Does he refuse because he thinks you could go back to work?

Steff:

He just says in his experience, people with AS don't tend to get it. So he doesn't want to try, which is kind of frustrating. But I can't do anything about it. Really. It's a condition that can be pushed forward the states on our disability policy.

Jayson:

Okay, interesting. I just never know how all that works.

Steff:

Mm hmm.

Jayson:

Let's touch base on that for Do you have an attorney?

Steff:

I don't and that's kind of what I'm thinking of, for the third time applying.

Jayson:

Does an attorney cost you money in Canada?

Steff:

I believe they get pay from the government if I get disability got

Jayson:

Okay, so it works like the states where they get a portion of your back pay.

Steff:

Okay. and stuff.

Jayson:

One of the things I want to touch base on is, I have a lot of listeners out of Canada and since I'm not versed on it, could you talk a little bit about the disability process in Canada and some of the issues that can be encountered? How far are you into the process?

Steff:

Yeah, so at least I know, for Ontario, it's called ODSP is like government covered disability. So yeah, I've applied two times, I'm on my third time, and I'm thinking it's my age, as well as my rheumatologist. He says that I won't get it for AS he has never seen it given for AS so he doesn't want to fill out the forms. Whereas my family doctor is more than willing to but she's done it twice. And I haven't gotten it. So it's just a little frustrating that he won't try. But we are really going to try this time and give as much info as we can. On AS, as well as you know, the mental health depression, anxiety, and hopefully third time's the charm, but I'm not sure.

Jayson:

So for Canadian listeners, and maybe I'm not aware this is disability done it up province level, or is it done at the national level?

Steff:

I believe its province,

Jayson:

Really? Okay, that's interesting. So somebody in Alberta might have different hoops to go through that somebody in Ontario.

Steff:

Yeah, because, um, what ODSP stands for is Ontario Disability Support Program. I think maybe the CPP, which is Canada Pension Plan that might be federal, but I don't qualify for that.

Jayson:

Very interesting, very interesting. So that's going to be something that anybody listening in Canada that wants to put in or needs to put in for any type of disability, you really need to look into your local provincial services. It sounds like then there's not a federal or not federal but there's not a national Canadian disability program.

Steff:

Yeah, no, it's province to province.

Jayson:

So third time, how is that? This might sound like a stupid question to some but how has that affected you emotionally?

Steff:

It is very hard, I remember the first time I was denied, I was gutted and I didn't apply for another. I got applied back in 2017. And it was before my diagnosis. So I was like, okay, you know, maybe that's why. And so, earlier this year, actually was when I tried again, it took me two and a half, three years to, like, muster up the courage to do it again. And I was denied again, and that really hit me hard. I was emotionally like, not okay. Because you put so much effort into it. And you know, it's your, your life. It's right now I live with my parents, I don't make a whole lot of money. And I'm almost 25 I'd love to move out in the near future in the next few years. But honestly, without disability, I don't really see it happening anytime soon. So I'm hoping that this time it will happen. But it takes a lot out of you because you put everything into it and to read the word like we don't consider you having a disability. It's very hard when you know, you know your life day to day and how hard it is to get out of bed. Some days, and someone just tells you nope, you don't have a disability. Sorry, we're not going to help you.

Jayson:

Yeah, completely invalidates you. Yeah, I've heard from folks before to say that you shouldn't take that personally. Because it's a form letter that you know, somebody sitting in a bureaucratic office somewhere throws out, but at the same time, it's not just a form letter to you. It's not just a form letter, that you get its validation, or lack thereof of what you're dealing with at any given day.

Steff:

Yeah. And it just feels like you know, just some random person, you don't know who they are. They just get to decide your fate in that part of your life.

Jayson:

In the system of what I know is similar to the States, you may want to look into attorney and a different rheumatologist. If, you know, with the national health care program you've got in Canada, I don't know how easy it is to switch doctors.

Steff:

Yeah, I'm actually; in the process of I've been referred to a new rheumatologist. But like, I had to wait six months last time; I'm not sure how long it'll be. So me and my family doctor are gonna apply again, if I don't get it this time, hopefully by then I'll have a new rheumatologist and who's willing to help me with it. And I guess we'll go from there.

Jayson:

Well, good luck in you. I hope that that process goes much more smooth for you that you got a doctor that will work with you, not against you.

Steff:

Yeah, it's very hard when your doctor doesn't want to help you. But yeah, thank you. I'm hoping, you know, things will change.

Jayson:

You're such a fantastic advocate for as I can't tell the listeners enough about please go out to your Instagram page interact, you're very friendly answer messages. You know, people can find your writings on ankylosingspondylitis.net, you're kind of all over the place, which is really, really great.

Steff:

I do my best to respond to everyone, especially on Instagram, because I know, it's hard. It's hard. It's a hard disease to deal with and if you don't have much support in real life, Instagram has a huge community of people that are more than willing to talk to you and let you vent and that's kind of just what I want to do. I want to be that person and I will do my best to respond to you as soon as possible. But yeah, I just love talking to people and being you know, that shoulder to cry on, if you are having a bad day, just talk to me and I'll I'll do my best to make you feel better.

Jayson:

That goes for a lot of people. There's some good people on Instagram that I've met, interacted with, and so I, it's awesome that you're not only part of that community, but working so hard to keep it up. Because there are people that come in that are new, and just some of them you can tell that they're really emotionally upset, thinking their life is over. And it's almost walking them off the edge of the cliff, so to speak, to say, No, come back, it's, everything's gonna be fine. It's just; you just got to look at things a little different.

Steff:

Yeah and, you know, when you're newly diagnosed, it does. There are a lot of emotions, where you are excited to have a diagnosis, because, you know, every person is different with how long they've been undiagnosed. So it's relief, and it's sadness, and you're grieving and it's a lot and yeah, Instagram, there's amazing people on there and, you know, pages upon pages of people relating to you and telling you that it's going to be okay, and I think that seeing people on Instagram, able to live full lives with this disease, when you're newly diagnosed is so important. Just to see like, Oh my gosh, I'm gonna be okay, you know, take this time to grieve and to feel but you you're going to pick yourself back up and we're going to help you and everything is going to be okay.

Jayson:

Yeah, that's, that's probably the perfect sentence to end this on, as everything is going to be okay. Yeah, Steph, I can't thank you enough for your time. I really appreciate it. I love reading the stuff that you write and put out and it's it's really good. I want everybody that's listening to head down to the show notes, where you'll find the link to ankylosingspondylitis.net. That will go directly to a listing of all of Steff’s different writings. And then as well as her Instagram page, please reach out if you have questions. If you're newly diagnosed, who've been diagnosed for 20 years, you know it, reach out to stuff and offer to help with anything that she's trying to do with advocacy, you know, whatever works best for you. Look at how stuff does it and become an advocate for it AS, become an advocate for just helping people because it really does pay just immense dividends.

Steff:

Yeah, thank you so much for having me. I really enjoyed talking to you. And yeah, if anyone wants to talk to me, I'm always here.

Jayson:

Awesome. You have a fantastic day, and I can't wait to talk to you in the future.

Steff:

You too. Thank you so much.

Jayson:

You take care.

Steff:

Bye.

Steff DiPardo’s writings on ankylosingspondylitis.net

https://ankylosingspondylitis.net/author/stephaniedipardo/?via=homepage-recents

Just Breath by Steff Di Pardo - https://amzn.to/3p7jfbw

Instagram - https://www.instagram.com/totallyfunkless/