Episode 031: 9 Resources for Ankylosing Spondylitis Support
Hello, and welcome to 2020. This is The Ankylosing Spondylitis Podcast and my name is Jayson Sacco and thank you for joining me today. You know, as many do on this first day of the year, I've been reflecting on my life and my interactions with Ankylosing Spondylitis. You know, I've been dealing with Ankylosing Spondylitis and its effects on me for about four decades now. And in those four decades, there are many things I could have done much better that might not have put me in the position I'm in now, and those items will discuss over the upcoming year in different episodes.
But first the Question of the Week. This week, I’ve seen quite a bit on the forums on Facebook dealing with Ankylosing Spondylitis, and chiropractic care. Now, I'll tell you first that the reason I was diagnosed and found out what was going on was due to a chiropractor. He had worked on me for a number of years as a child and just said, I can't figure out exactly what's going on because he's not responding to generally what we should you know, be seeing as results from the treatments he's done. So it was because of him that I was referred to, you know, a rheumatologist who diagnosed me with Ankylosing Spondylitis for that, it turned out great. But fast forward to now, you know, 40 years later with the level of my Ankylosing Spondylitis is, and the amount of fusing that I have going to a chiropractor would be the wrong thing to do. And so you have to remember that there's no one fit scenario for all of us. As a general rule, the Spondylitis Association of America recommends that you do not have chiropractic care done. That is because you may have a chiropractor that's completely unfamiliar with Ankylosing Spondylitis, and what their adjustments you know, may or may not do. So like everything else with Ankylosing Spondylitis, it's really going to be dependent upon each individual. If you have very little to no fusing and you're just in the process of discovering what Ankylosing Spondylitis is, and your chiropractor is completely familiar with Ankylosing Spondylitis, it may be okay. But again as a general rule, the farther you are into AS, the less likely that you should be probably visiting with a chiropractor and stick more along the lines of traditional medicine routines. For other countries, the guidelines may be slightly different or completely different. Always check what the chiropractor knows about Ankylosing Spondylitis, the familiarity they have with it and just make sure they don't try to adjust your neck or crack at or snap it or anything like that, that can cause you additional pain or even worse, maybe even paralysis. So anyway, again, this one is going to be real simple. It's just chiropractic care should I or shouldn’t I is really dependent upon each individual so you are the only one that can make that call? Just know in the United States the general rule is no chiropractic care for anybody with Ankylosing Spondylitis.
Now, the article that I kind of was reading through for this week's episode, (it’s found on healthline.com) is called Nine Resources for Ankylosing Spondylitis Support. We talked about some support in the previous episode and I'd like to cover that, again, with Ankylosing Spondylitis, and I've experienced this myself, you can very easily fall into the trap of isolating yourself due to pain. Even in a household of people, you can isolate yourself. And so where do you turn for support? Where do you turn for assistance in the day to day activities of dealing with Ankylosing Spondylitis could be a spouse, but then there's those of us who are not married or dating that don't have a spouse or partner to turn to. So you've kind of got to look at the different options. And here's nine of what is available.
Number one, Message Boards. You know, there are places like the Spondylitis Association of America, and they have a message board. Also, ankylosingspondylitis.net has message boards, as well as obviously all the Facebook and Instagram, all of those social media/message boards that will allow you to interact with others and let you meet a lot of great people that are also dealing with their versions of AS, and I found that to be very, very helpful. Now it doesn't get you out of the house. There are things you can do to go out of the house. We'll discuss those but at least it's a start and it's a great start.
Number two, this is kind of similar to the first one and that is Online Forums. The Arthritis Foundation, a nonprofit for arthritis research and advocacy, has its own page called Live Yes, Arthritis Network, and that's an online forum that offers opportunities for people to connect. Also ankylosingspondylitis.net is available as well as the Facebook forum so use any of those that you're comfortable with.
Number three, and this ties in with one and two, which is Social Media pages. You know, there's a ton of stuff on Facebook, Twitter, including my very own the Ankylosing Spondylitis Podcast page(on Faccebook), the different Ankylosing Spondylitis pages, Instagram, all of its out there for you to peruse through and interact with people. So there's just lots of those first three, number one message boards to online forums and three social media pages.
Number four Blogs. There's millions of blogs out there. So all you really have got to do is kind of search through the blogs for Ankylosing Spondylitis, chronic illness, any of those, and you can find plenty of places to read and interact with the authors. Spondylitis Association of America has its own called Your Stories, which allows people to type and tell what they're dealing with, as well as ankylosingspondylitis.net has an area titled your stories where you can interact and create your own story based upon your experiences with Ankylosing Spondylitis.
Number five Online Talk Shows. This can be accessed from anywhere in the world that you've got internet access if you look on the Spondylitis Association of America, on their web page, you will find a show called This AS life and there's a live version of it hosted by a gentleman named Dan Reynolds, who is a lead singer for a band called Imagine Dragons. You can turn into this when it's on live. You can also watch past episodes on the website. Anywhere you have Internet connection. That's a great spot to start if you want to see and hear others that are dealing with their as issues. In the vein of talk shows, there's also exactly what you've got here, The Ankylosing Spondylitis Podcast. Well, I don't take incoming phone calls or anything like that. I do try to bring relevant topics to all of us that are dealing with Ankylosing Spondylitis. So you search podcast, there isn't really any others out there that are specific to AS but there are a number of them that have AS topics covered. So I think you'd be surprised if you do a search on as podcasts.
Number six, Find a Support Group. You know, that was my big thing that I wanted to do in 2019 was to join a support group, there happened to be one about two and a half to three hours away from my house. The Spondylitis Association of America does this support group and it's one of their affiliate support groups and it's fantastic. I met with them once at the end of the year. And we have another meeting coming up in a couple weeks. I’m really looking forward to going so I'm hoping the weather holds out. Look at the website for Spondylitis Association of America and see if there is a support group near you. They all have leaders help facilitate discussions on a number of different topics that are about or related to Spondylitis Arthritis. You know, sometimes there's guest speakers and if there's not a support group in your area, let's figure out how to get one started, you know, reach out to Spondylitis Association of America. If you're in the United States, if you're in another country look and see what your local arthritis association offers. And let's see if we can get one started so that it's now you're the one that's leading it, and now you have your support group, that'd be a great 2020 goal.
Number seven, consider a Clinical Trial. There are all sorts of medications that have come out to help with Ankylosing Spondylitis. We're all familiar with the biologics and the other things that are out there, but there are a number of different ones that are being looked at through time. So maybe you donate some of your time to a clinical trial. I know I recently, about two months ago participated in an advertising review done for a medical company for a drug. I don't know what the medication is that they were looking at advertising issues for, but I do know it was for Ankylosing Spondylitis. I'm curious to see if and when it comes out what they might have taken away from the advertising suggestions that we did. So it was a lot of fun. Anyway, clinicaltrials.gov you can do searching for Ankylosing Spondylitis and see if there's any that are in your area that you can participate in.
Number eight, you know, you can always or should be able to at least Turn to your Doctor for Support. Now he or she should be able to provide you with literature and discussions on medications and therapy and also recommend support groups. So make sure to ask your doctor and their nurses about what activities they have available that might relate to Ankylosing Spondylitis that you can take advantage of. They'll have a world of information available. You just have to know how to ask for it. Sometimes I find especially my new rheumatologist is not the best about just freely sharing the information like my previous rheumatologist was.
Finally number nine, your Family and Friends. It's interesting when I read the forums to hear the number of people that talk about how they can't turn to their family and it's really kind of sad. I always wonder what it is that your family doesn't accept. It generally all I can come up with is that because we don't always have visible external signs to our illness that they feel it's, you know, for lack of a better word, fake. I know I experienced that when I was a kid. So I was deemed as lazy and different things were said to me because of my really inability to participate in certain things or do them the way they might need to be done. So I get that and until I started having hip replacements, the whole item of well, in certain members of my family, that they finally accepted that Yeah, maybe there is something wrong with this guy. Maybe he's not just faking it and lazy. So if you're dealing with that, sorry, you know, try to find other people that will be more open to listening and talking with you through support groups, or any of the other suggestions I brought on. Don't forget to be active in the Facebook forums. That's a great way to interact with a lot of people and meet some really great people and you know, get some support you need. Share this podcast with your family and friends, and let them know that let them hear somebody that's dealing with it. That's not you. That may very well lead to them getting a better understanding of what's going on. So there's a number of ways you can try that or tackle that. So I wish you good luck and doing it. And just know that as we all deal with as it is, as I said before, and isolating disease and can make you feel like you're alone, like it's just you that nobody understands what you're going through. And the only way to fix that is really you starting off and reaching out. There's all of us here in your in this as family that will help you communicate with you be there for you. But until you're ready to accept it and open yourself up to it, you won't be able to get the full benefit.
So I wish you luck. I wish you all a great start to the new year and just a fantastic 2020 as we go forward and I can't wait to keep interacting with y'all. So you guys have a great day. And if you have any questions don't hesitate to contact me at email@example.com