This is the first in a three episode set discussing diagnosis and treatment ideas for Axial Spondyloarthritis.
In this episode I talk about things to consider when you are told you have Axial Spondyloarthritis.
Hello, and welcome to this week's episode of The Axial Spondyloarthritis Podcast. So I wanted to do really kind of a series here and this will be the first of three episodes over the next few weeks that really talk about the whole diagnosis/treatment process of axial spondyloarthritis. What do I do? Can I talk to people? I feel alone, because nobody's heard about this. And there's so much that is a newly diagnosed person that you just, you're feeling like you're taking a drink out of a firehose, as you've got information coming at you from everywhere about this disease. So I wanted to first start off and just kind of work you through the disease, what it is, and how do I start to begin to adjust to what I'm dealing with.
But first, a couple housekeeping things, please head over to spondypodcast.com, there, you'll find a tab at the top called Reviews. When you go to the Review page, there's going to be a link right at the top of the bar across that says rate show click on that, please leave me a review of the show at either Apple podcasts or Podchaser, or if you really so inclined at both would be fantastic. But please leave a review for the show at one of those for me, if you wouldn't mind, that would really be great.
So with today's show, I decided to title it. And this is really based upon a series that was done at the Arthritis Foundation. I'll have a link to it in the show notes. But today is a really, Adjusting to Being Diagnosed with Axial Spondyloarthritis and what does that mean? Well, as I've said, Before, I was diagnosed in 1984; there was no ability to reach out to other people like there is today. So that really made it much, much different. And for anybody diagnosed today, I really think that you can get overwhelmed if you're not careful. But you can also be exposed to so much good information. So what do we look at? As we start off with this diagnosis? What does that mean?
Well, first, I suggest you Accept the Change that's going to happen in your life. A diagnosis with axial spondyloarthritis means that some things in life are going to change for you job that you do might be something in the future that you're able to continue doing certain activities you do with your family, your spouse, your significant other, all of those may become more difficult, not always, but may become more difficult to do in the future. So you know, if your job involves, like a lot of hours of sitting in a computer, or building even houses, there might be some adjustments that need to be made, as some sports you might like to do, those might not be possible in the future. So if you can play them now, and they don't hurt you too bad, keep doing it, your body will tell you when you are no longer able to participate in certain things. And once your body tells you, your best bet is to listen to it and stop. And then finally, there could be some changes to the way you interact with your family. You know, one of the things that I remember is that, as I said, I hurt as a kid, I don't know, if I was always believed perfect. I know I wasn't always believed and you may encounter similar items, you've been telling a spouse or a significant other, I don't feel good, this hurts. I don't want to go do that today. Because I don't feel good, I'm having a flare, whatever the terminology is that you use and they may or may not understand. They may want to go do the item themselves, and you're at home because you can't participate, that happens and just hope that they're there to help you when you need their help, and you can't participate in certain things. So it really, there's going to be a lot of changes that may come along, you could end up pushing some people away, you could end up drawing some people closer, it's all gonna be dependent upon your mental attitude and how you handle the disease. It's gonna hurt, there's no getting around that there's no painkiller that's going to take all the pain away, you are going to have a painful experience. But it's how you deal with that, which will really see how it comes out in the end. And that's about the only thing I can say because it's just something that you're going to have to go through. And there's not a lot that can be done to alleviate 100% of the pain that you're going to experience.
And with that the next thing is Planing for the Pain. You know, when you have an axial spondyloarthritis diagnosis, what you really want to try and do all the time is manage the pain. You're always trying to find out ways to alleviate or minimize the pain. That's not always possible. It's not something anybody wants to hear. But I'm trying to be as 100% honest with you as I can, that you're going to encounter pain and you're going to just have to deal with it. As somebody that's been dealing with it a long time about how they dealt with the pain when there was no pain medications handed out for this disease. I can tell you many, many days I just dealt with, it doesn't make me great by any means. It just means that you know, there are things that they're not going to be willing to hand you pain medications for to alleviate. And so you're going to have to come up with ways to help to plan to manage that pain. One of the ways that I use is meditation, I think meditation is a great thing to learn, it can be done, I do Transcendental Meditation, you can go to a Transcendental Meditation School that's near you, if you want, there are a number of other options available to you as well. In the shownotes, I'll have a link to videos on Transcendental Meditation, as well as some other meditation options, find the one that works best for you. Another thing that I never would have thought about using to manage the pain but I am a huge believer is yoga. The more you move, the better you feel. That's just unfortunately, the way this disease is. There is a fantastic page on Facebook, called Yoga for AS and the two gentlemen that run it both have AS. And I would highly encourage you to get involved and start watching their videos, interact on their page, use icepacks if you need them, use heat pads, find what works for your body, and then make sure to have that available and have help for the days when it's really really bad.
Also, you're going to have to practice some Emotional Self-Care, we'll choose what is that? Well, you hear people will sometimes say you are not your disease, or another one, I've even said quite a bit is I have AS, AS doesn't have me. That can be hard to accept when you're dealing with massive flares, huge amounts of pain and all you want is, you know, some type of something to help alleviate or minimize that pain. But what you have to remember is, even through the pain, you're still you, you're still that person that you were before the diagnosis, you are still that great person that brought joy to kids, happiness to a significant other, you know, helped out your parents, whatever it was, that the things you enjoy doing before your diagnosis, you're still capable of those, it just might be on a different level, a less amount, whatever it is, don't let yourself get overwhelmed, I guess is what I'm really trying to point to make sure that you practice, you know, some type of self care, take care of yourself. That might mean at times when your friends are going out and you want to go out really bad, but you just can't do it. Maybe they'll come and hang out with you at your house while you deal with a flare, maybe they won't, you can't be upset with them. If they don't, because they're all everybody's got their lives, they're going to lead and you are going to be as active and involved as you can. And then the days when your body doesn't want to do it, you'll sit back. So remember, if you're feeling overwhelmed, or you're feeling discouraged, remember these items:
I've seen people that are in bad flares turn around and snap at everybody. And well that can be overlooked by many, eventually it becomes something that others become resentful of, and could drive a wedge into a good relationship that you don't want to lose. So really, you have to remember to not only take care of yourself, but just be cognizant of the attitude that you have doesn't mean that you have to ignore your pain doesn't mean that you have to not let others know that you're in pain, but you can't take it out on others. So that's if that's a lesson that I could, you know, pass on to anybody. I hope that that's the one because I made that mistake for many years. And I'd rather see many of you. In fact, I'd rather see all of you not make that mistake.
The other thing you want to do is build a support network. You know, the personal relationships that you have, can give you a boost, when you're not feeling very well when you're at a low of phone call from a friend can really change your overall you know attitude for the day. And that means that friends and family can be come great support for people who have axial spondyloarthritis. So try to never drive a wedge between them. Explain what you have. If for some reason they question or don't believe you be because this is a disease that nobody's really heard of. Give them an episode or two or five or 80 of this show to listen to. Let me be your voice. Let me explain so that it's not you complaining in their mind It's, instead they're learning about what you're dealing with, if you can help to change it from a thought process like that, where maybe somebody says, Well, she just complains all the time, or he's just complaining all the time, to Wow, I listened to the show with this gentleman that talked about his experiences with axial spondyloarthritis. And now I understand what you're dealing with, I just thought it was you, I didn't realize that there's many, many others that go through this as well. And that might really go a long ways towards salvaging some relationships if they're, if they're becoming rocky.
So finally, stay positive. If you can keep a positive outlook, you know, it can help to, in some cases, maybe even release pain blocking chemicals. Now, this doesn't mean that you're going to, if you stay happy, your your pain is going to go away. That's not what I'm saying at all. But if you can stay positive, and try and you know, work through any of the pain, it might not be as intense, it might be a little bit less, doesn't mean it's going to work for everybody doesn't mean it's going to work every time doesn't mean you have to always be the most positive person around and, and can't have those off days, where you sit there and go, geez, you know, this really sucks, but you can't have more of those days than the positive days or else. The negative attitude is really going to allow you just not to feel as well. You know, try to be as happy as you can with the life that you build. It's all about perspective sometimes. So try to focus on what's right with your life instead of what's wrong. It can really make a difference at times.
With that, I hope everybody has a wonderful day. I wish nothing but the best for everybody in their daily struggles with axial spondyloarthritis. If you have questions or concerns, please feel free to reach out through the website to me. I'm happy to talk to you, we can jump on a zoom call if you're having a rough time, chat a little bit, and I'd be happy to listen to any issues you're dealing with. So again, please try to stay as positive as you can. And have a wonderful week and I look forward to talking to you in the future.