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Feb. 2, 2020

Exploring ankylosingspondylitis.net

Exploring ankylosingspondylitis.net

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope everybody's doing fantastic today; I apologize if the audio quality is off a little bit. I'm fighting a bit of a head cold, so I can't really tell if I'm sounding clear or not. I'm real happy to be here today and be able to record and talk with everybody about what I think is a really cool resource. 

But first, I want to do this week's Question of the Week. You know, as I was going through the Facebook forums, I happened to come across a very simple message that somebody had wrote, and it just said, “I can't go on anymore. I can't do this anymore.”

And I thought about it in, you know, my first response was, yes, you can, because we all have been there. We all have thought that, you know, it gets to a point where there's any given time where your pain is pretty severe and you just think I can't do this anymore. But as people with Ankylosing Spondylitis, we can do it, we do do it. We do it every day, we do it every hour, and we just survive. That's the way it goes. Now, that's not to take away from anybody's pain and say that it's less or that it doesn't belong or that they're thinking about it the wrong way. Because we all have that pain, we all deal with it. First, if you really do think that you're in a potential where you're going to hurt yourself, there is the National Suicide Prevention Lifeline at 800-273-8255. So first, if you do really think that you may hurt yourself, please reach out to them or reach out to anybody that is on the forums. There's just a bunch of great, great people that are willing to talk with you, listen, empathize, and work through any issues you're dealing with. So again, when I see these messages of saying I just can't do it anymore. I certainly understand we've all been there, but please reach out and get the support you need, if you're not getting it from a significant other, or family member, reach out to any of us on the boards. There's just a great number of people there that would be willing to talk with you, I'm sure, either through chat or through a phone call to make sure that you are in a good place. So, don't ever think that suicide is your only option. I did some research and a new study published in the Annals of Internal Medicine found that 10% of the more than hundred thousand suicide deaths included in that study occur to people with chronic pain, though the study you know, can't prove that chronic pain was a contributing factor. The lead author Emiko Petrosky, medical epidemiologist with the Center for Disease Control, did note that mental health issues were more common among those with chronic pain, and that the proportion of suicides by people with chronic pain had increased from 2003 to two Thousand 14 as the number of people with chronic pain rose. So the answer isn't that people with chronic pain aren't strong enough. They not that they just need to toughen up as so many people tell us if you have chronic pain, you know, you know what it's like to deal with some get the appropriate help, whether that be reaching out to the Suicide Prevention Lifeline, a therapist, family, or just any of us. We're here to help support you in any way we can. 

Now, onto this week's topic. A few months ago, I came across a great website called ankylosingspondylitis net. Now, many of you may be familiar with it. I actually was not at the time when I came across it. And it found it to just be a fantastic reservoir of information. There are tons of articles on the website written by people with Ankylosing Spondylitis. So it's not that it's just people telling us how they think we might feel. It's really people that are dealing with Ankylosing Spondylitis. And one of the contributors and how I found the website was through Jed Finley, who hosts one of the Facebook forums/pages called Living with Ankylosing Spondylitis. It was through here that I followed some of his writings back to ankylosingspondylitis.net and as I went through the website, it found just great, great resources. When you get there again, it's ankylosingspondylitis.net, you'll find in the upper left corner, a menu section. And when you click on that, it opens up a whole world of information to you. And you'll find Q&A stories forums, in some very good information if you're just being diagnosed with Ankylosing Spondylitis. You'll find all sorts of links to what it is? What are the different types, you know signs and symptoms, diagnosis treatment, living with AS, mental health and then special sections of it all broken down, you can go right to it and just delve into all sorts of great topics that are written by people with AS. I was so impressed with the site that about a month and a half ago or so I was able to partner up with them to help to moderate some of their Facebook forum information for the ankylosingspondylitis.net Facebook pages. So it's really fantastic and I really am extremely excited to be partnered up with them. But again, the website itself has got so much great information that I see questions all the time from people about, well, what are some of the basics What do I expect? You know, if you go to basics. And it says what is Ankylosing Spondylitis and it breaks it all down his symptoms. It talks about how the curvature of the spine is affected, how the SI joints are affected, who generally gets Ankylosing Spondylitis and we know that that number of statements that it’s a men's disease is starting to change. And we're seeing more and more women diagnosed properly with it. So it's becoming much more parity, men to women in this. So it's just all sorts of great information out there to help you in your search for additional pieces of the puzzle that you may be looking at. You know, it's also what if you've been diagnosed, you go to diagnosis, and it talks about maybe the challenges you've dealt with with getting diagnosed. Some of the criteria doctors look at some of the diagnostic tests being used. And then at the bottom, there's always going to be links to articles like there was a great one called finding a good rheumatologist, or pain in your emotions. Those are done by the editorial team, but you can Then go back up and search on some of the different authors that work in the community section like Jed and, and any of the other ones and delve into the articles that they've written as well. I just got a great one out there right now that talks about, you know, going bowling with Ankylosing Spondylitis. 

So there's all sorts of fantastic information available to people that either have or think they have a closing spondylitis. You can follow along on these articles and see that there's just such a fantastic outpouring of information for people. These people that write these articles really want to help. It's just a great place. I can't say enough good things about it. The thing that I really like is under the community section, you can go to a section called share your story. I encourage people to do that. Go out here and write about your journey with ankylosing spondylitis. How were you diagnosed were you not diagnosed yet and put it out there to share for others to read because Well, we all have a differently. There are people that can take a lot of good information away from reading about others, battles with Ankylosing Spondylitis to best know how to approach their doctors and talk about it. So it really I wanted to make sure that in my desire to provide information and support for everybody with ankylosing spondylitis, I bring to light the different tools that and resources that are available. So on top of this website, this is just one in a family of websites that this company runs. So if you have anything else besides Ankylosing Spondylitis, if you scroll all the way to the bottom, you'll see that there are other just other sister sites that you can then go and explore. If you have psoriatic arthritis or rheumatoid arthritis, or irritable bowel syndrome or whatever, there's different Ms. There's all sorts of different options out there where you can find additional support for anything you may be dealing with. So Again, I encourage you, this episode is fairly short, because I want you to go to ankylosingspondylitis.net and explore it yourself. Read the fantastic articles, join the community, sign up for their email list and get access to new stories when they're published in know that they're there. So take advantage of it. Take advantage of their Facebook page as well as any of the other Ankylosing Spondylitis support Facebook pages, and I look forward to interacting with you all online. You guys have a great day. And if you have any questions, don't hesitate to reach out. I'm happy to touch base with you.

Suicide and Chronic Pain:


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