Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I'm your host and I hope everybody is doing fantastic. I wanted to go over a couple of emails that I got. Both of them are really cool. The first one is from Alex Levine and Alex has a fitness channel and in the shownotes I’ll have a link to his website. And in it, he wrote to me,
“Hi, Jayson, I just wanted to reach out and tell you that I enjoy the podcast. I have AS and I work as a personal trainer specializing in training others with AS. I just did an event with the Spondylitis Association of America, discussing health and fitness. It's nice to connect with others who are sharing similar experiences, keep on doing the good work.”
And just as I said, I'll have a link to both Alex's website in the show notes, as well as his Facebook page where you can find that event that he did with the Spondylitis Association of America. It’s a very good watch. The second message that I got was from a listener in the Faroe Islands. I hadn't been overly familiar with this country. It's basically located right in between Norway and Iceland and is part of Denmark but it's also I think its own country is the way they they officially look at themselves. But anyway, it's called the Faroe Islands. And I had saw some downloads coming in from there and I was like, that is really cool. I got this short little email but it was really fantastic to get and it was from a gentleman name, I think I'm saying this right Terji Beder, yeah, I think is how you say it. And I apologize for butchering that. And it says,
“Greetings from the Faroe Islands. I just wanted to thank you for hosting this podcast. I feel like there's a lot of information, content missing on AS on the Internet, or really anywhere. This is a great contribution with great quality. I love how you can make so many episodes and still managed to keep the topics original and with not much repetition. Great work. Sincerely, Terji.
Thank you so much. It's listeniers like you and everybody else that I hear from that I do this. And I really again, I love hearing from everybody. So if you're out there, please send me messages. I'll most likely unless you tell me not to read them on the next episode I read and then I respond back to everybody. I really enjoy receiving all these messages. It's just fantastic. So with that said, let's do a couple of quick housekeeping things, please go to spondypodcast.com
, where you can sign up for the newsletter or use the Contact feature to reach out to me. There's also a section in there where you can go to access if you want to get a Spondypodcast t shirt or a couple of other items that are used to help support the show, or even just going to buy me a coffee calm where you'll find a link on the website to help support the show. Everybody has done that so far. Thank you again so much and I really appreciate it.
Now on to todays show. I received an email today that was a solicitation for a website I belong to, and the title of it was, You Are Enough. And I saw that and I looked at it and it said, being you is more than enough. And I started thinking about that, as you know, we have this chronic illness, this chronic disease. There's many, many times that we all look and say, why me, I miss what I could do. You know, I really am tired when I tried to clean the house for the day. I have done every one of those and so I'm not picking any one particular person. But I started thinking and I said, is that really fair to us? Nobody I've ever talked to with Ankylosing Spondylitis has ever said, I asked to get Ankylosing Spondylitis. It's like any disease that somebody has, It just is what it is. And you have to work to overcome and move around it. So I started thinking a little bit you know, they had a couple of quotes that I thought were really cool. In this website is myspondylitisteam.com
. I'll have a link in the show notes and after years of feeling like I need to be better, stronger, healthier and in control, I now know I am enough and that was done kind of anonymously by a member of one of the spondylitis teams. And I started thinking about that. And I said, you know, there's really a lot of truth to that and they started kind of looking around and there's a website, the autoimmuneinstitute.org
. They had a interesting kind of take on this of coping with a chronic illness. And they started off by writing, when your chronic illness has put you through the wringer in terms of doctor and hospital visits, lab tests, imaging, medications and other treatments. It's only natural to feel defeated. And that I think is even compounded for many of us in the Axial Spondyloarthritis community. Because somebody might go through the whole rigor as the article says, and still never be diagnosed. They may walk away with a doctor saying, I'm not sure what you have or it might be fibro or it might be this or the one that really gets to me is, “I don't see any inflammation or fusing in your x rays, so no, you don't have Ankylosing Spondylitis?” Well, that's true. You probably don't have Ankylosing Spondylitis. What you may very well have is Non-radiographic Axial Spondyloarthritis, where you have all of the pain, the stiffness, everything, you just don't have any shown fusing. And for some reason, that seems to get looked over quite a bit. And I hope as more and more people hear the shows, and are able to better advocates for themselves, they're better able to lead doctors to say, you know, I never thought of non-radiographic axial spondyloarthritis. Let's do a little more digging, and you end up with a diagnosis where you can finally get a treatment plan that is best for you. The article goes on to say all of us have been there at some point when you almost want to throw your hands in the air and let the quicksand You wonder, I've been there and spent years attempting to manage the symptoms on my own, we're getting sicker and sicker. The author says, “I was grieving for the health I used to have, unsure of what to do.” So the author is really talking about what could be applicable to any of us, as we deal with these chronic illnesses in this case, Axial Spondyloarthritis, we all look for the remedy, can we fix it? You know, I see everything out there from, well, can I just take supplements? Can I just eat healthy? Can I just you know, skip all medications and only take them when they're applicable to my particular flare time or whatever? There’s always an outlier that that works for them. And I occasionally see them come on to the different forums and say, well, I did this so you can do this, treating this disease is kind of a one size fits all and that's really a mistake. It doesn't work that way. You have to find find what works best for you. I personally am a fan of biologics; I think they've helped me tremendously. Not everybody else is, if you choose not to take them, that's entirely up to you. And you are absolutely within your rights as a patient to choose what you do or don't take. I will never say you're wrong for your particular views. But what I'll also do is tell you not to tell you that your views are applicable to what everybody else should believe. So just remember, as you move through these chronic illnesses, you want to look at what's best for you and understand, you know, we're all different in the way we approach the treatment of this disease. We're not alone. We're all in this together. So it's as the author goes on to, to discuss. “It's an odd mental space to be in, hoping you're suddenly going to get better. We'll either prtending nothing is wrong, or deciding your life is over and you'll die young.”
You want to remember these few things, you don't know everything. And I don't say that in a bad way. I don't know everything. I've never met anybody that knows everything. No matter what challenges you're experiencing in your illness, there's always something out there. There's always a community, doctor, a therapist, something that you have not tapped into yet, maybe you don't have the insurance if you're in the United States or in any country. And until you get that insurance in place, you're not able to tap into some particular resource. But once you get it, then your best bet is to tap into that resource and take full advantage of all it can do to help you. So how you perceive your situation is a direct result of what you know. So when you start to challenge what you know, asking why and how at every intersection, new worlds will open up and that's really true and that you know. You might have your mind dead set that I'm not going to take biologics because they cause cancer. I see a lot of people say this, that they do do this or they do that. And we always say, No, those are potential side effects. New research has also shown that they don't do this or they don't do that, unless you meet certain unique conditions, have certain family medical histories. And I'm using biologics just because that's the simple one for me to recall right off the bat. But that's really applicable to all medications. So you might be adverse to some or all of them. And you find out in talking with people that they've had really good responses to them, and there's far more positive than negatives and you change your mind and say, I'll try this might be somebody like me who doesn't eat the best and who I really need to eat much better and I need to open myself up to and not be so let's face it so lazy to not cook the way I need to be and not fall back on the easy foods that I eat. They taste good for a reason, because they're generally bad for you. So, just realize you're also not alone. You know, whether you're running the diagnosis marathon, trying to get all the doctors to agree as to what's going on with you trying to juggle a complex set of symptoms. There's a community of us all out there who have situations that are similar to yours. And we've all probably been where you're at now as you move through the diagnosis process or the early stages of the disease. And, again, well, we're all going to be different.
We can all bring some perspective to what you're dealing with and at least be empathetic and understanding to what you're dealing with. You know, we all feel alone at times. But we can either experience this loneliness and isolation or in unity. It's a matter of accessing these connections. And for whatever reason, Ankylosing Spondylitis is a very easy disease to become lonely with, to isolate yourself with, I've done it. In a lot of cases, I'm still doing it. And I encourage you get out, be involved, you might not be able to go out three or four nights a week, you might only be able to go out one night a week, and then you have to take the next five or six, seven nights to recover from that, that's fine. Take that one night out, enjoy yourself, don't overdo it, but enjoy yourself. And then you cannot be so isolated, you can be accessible to other people and other people can be accessible to you. And you can keep that connection going. You can accept your current situation without giving up and that's something that really took me a long time to come to terms with. Everybody's in various stages of accepting this disease. Accepting is allowing yourself to be where you are, even if that place is dark. This is how I feel and I'm dealing with it the best I can are two things that you're entirely allowed to say, experience, and feel when you're not craving the life you used to have, or resigning yourself to a future of pain and discomfort, you'll be better able to take small steps forward, and really is the author indicates that's what it is. Take that small step forward, that little baby step to move each. Maybe it's each day you do one thing different. Maybe it's each month you do one thing different, whatever the timeframe is for you try something different to come out of your shell, to be more outgoing with others to interact with others, and not feel so isolated, not feel so alone. All of that's important for your mental health and for you to be the best person you can be. And that doesn't matter whether you're single, married in a relationship, whatever. Isolation can be very damaging to you to relationships. So I encourage you to please make sure whatever the timeframe is to reach out and interact with people.
They did a great job and five things to do when you feel like giving up. And I'll go through these,
Number One, Find Joy, you know, go on to say it can seem impossible to remember what it's like to feel good, I can certainly understand that. And besides the pain and other debilitating issues, you're under constant pressure by the world around you and yourself to get better. You might have a spouse that doesn't understand or doesn't show any desire to understand, parents, employment, it's all out there that say, well just take some aspirin and you'll feel better because they have no clue as to what we're dealing with at any given time. So there's things you can do to try and remove some of the stress of being sick, which is enough, you know, to knock you down at any given time, but you can try to move your mind into a more positive space. Now, that’s not just someone that tells you well think positive, be positive, no, but if you try to think of a positive thing any given day, it can help as you move forward. So weaving these falling practices into your daily life can regenerate a sense of hope and peace. Resurface a happy memory, think about something that you did in the past that really made you happy, maybe was an event you like to do a television show you like to watch a person you like to talk to. If it's any one of those and you haven't done any of it, you know, if you haven't watched that show in a while, haven't talked to that person. Do it, pick up the phone and call them. Maybe you'll find out that person hasn't called you because they've kind of been afraid and not sure how to approach your illness. Call them up, talk with them. Talk about the illness; don't talk about the illness, but talk to them. Let them know you're still alive. Do something creative and tactile. Maybe you like to work with wood. Maybe you like to just go for a walk. I started doing this podcast. There's all sorts of different things paint, paint, a building, paint a picture, your choice. I don't care. Do whatever makes you happy, could be just doing a puzzle, which is great because we all talk about dealing with the brain fog. Puzzles are great ways to keep that brain thinking,. Keep a gratitude jar, doing so write down one good thing that's happened to you during the day, the week, whatever, put it in there and, you know, keep focusing on what those one good things are, each day or each week. And then occasionally, when you sit down to watch TV, or that jar out in your lap, and read through the different things that you were grateful for. So great, very simple way to just remind yourself of the things that you do good at any given day. Find a meditation practice that works for you. This is big. I've discussed it before I do Transcendental Meditation, doesn't mean that's right for everybody. I am a person that would have easily told you meditation as a joke, but since I had done that, I think it's a fantastic practice. There's lots of different it available on YouTube. So do some meditation, the worst it's going to do is not help you and you move on, it's not going to hurt you the best it's going to do is you find a new practice to help relieve some of your everyday stress. Then finally engage in acts of kindness. You know, if you're walking out to your car and you see a senior, we're gonna put groceries in their car, a mom with kids, a disabled person offered to help them, you going out to grocery stores example and you see somebody self bagging their groceries, offer to help them even as simple as somebody is trying to get something off of a shelf, offered, help them if you can. It's little acts of kindness that going to make you feel better, and be helpful to that person in need, and hopefully make them feel better.
Number Two, Keep a Symptom Journal. This is a powerful tool that can help you recognize patterns in your health. And we've talked about this. There's the app for your phone called Chronic Insights. And I did an interview with the creator of that app and his name is James Allen. James has Ankylosing Spondylitis. So he's very aware of what we all go through. This app allows you to go in, enter in your condition, enter in, how you're feeling that day where the pain is, and turns out to be a great way to then share that with your doctor to give them a better overall understanding of how you're doing at any given time. On top of the journal, you can enter in if it's just paper, you can put you know, how do you feel? When did the pain or the issue you're dealing with start? Where were you when it started? Was there a certain thing you were doing that maybe triggered it to start and all those can be in there to, again, track your progress on any given day, week month, and see how you feel through the year.
Number Three, Partner Up. This one is really easy to do now with social media, find 2,3,4 people that have Ankylosing Spondylitis, or a condition that you're dealing with and should have a message, check in with them every day, ask them to check in with you just to make sure everybody is doing well. As I've done the show, and I've talked with people, all my guests, I don't check in with regularly. But there are some that I check in more often than others. And it's really great. I bounce ideas off of them; they bounce ideas off of me. And we sometimes just check in our venting spot to listen to them feeling like having a bad day and they want to tell you how bad they're feeling. And they just need somebody to listen, that's not their spouse, because their spouse maybe is sick of hearing about it. So there's a lot of ways that you can be there for somebody else. You know, just try reaching out to somebody privately and see if you guys can connect and help each other out. You know, and there's all sorts of groups as you know on Facebook and Instagram and and all over the place. Shoot me a message through Facebook or Instagram and you know, again, I'm happy to hear from you. I'm happy to be there if you need some help.
Number Four, Share Your Story. This is a great thing to do. You know whether it be sharing your story via coming on to The Ankylosing Spondylitis Podcast to talk about your Ankylosing Spondylitis or non radiographic journey, whether it be going to a website like ankylosingspondylitis.net
and in the section they have there you can enter in your biography to talk about what you've dealt with. Maybe it's starting a blog; there are all sorts of things that are available to you to share your story about your journey with axial spondyloarthritis. Any part of sharing can be tough for some folks, just by stepping out sharing it, whether it be on a podcast like this, maybe even creating your own podcast on on a topic. All of it helps you and helps the people that listen to you. So don't hesitate to to step out of your comfort zone, do something that you aren't familiar with. If you want to start a podcast, let me know, I'll send you the resources of the different tools that I think will help get you up and running really quick. And you'd be surprised there's a lot of them that are free. So...