The Ankylosing Spondylitis Podcast - Jayson Sacco EPISODE 28
Episode 028: 5 Things I'm Tired of Hearing About Ankylosing Spondylitis
00:00:00 00:16:47

Episode 028: 5 Things I'm Tired of Hearing About Ankylosing Spondylitis

Hello, and welcome to The Ankylosing Spondylitis Podcast. Can you believe that this is almost the end of 2019? Man this year has just flown by. It's been a really, really interesting year for me from the great highs with this show, the great numbers that have come in and the positive feedback I've got from everybody about liking the show, to going from highs like that to dealing with the passing of my father in August and the whole dynamic that created for me. I know I'm grateful for the almost 75 years that he was around and he was here for me. So that was fantastic, but I’m not going to lie. It still stinks to you know, I want to call him. Even though he didn't have Ankylosing Spondylitis, he and my stepmother listen to all these episodes, and were two of my biggest cheerleaders for these episodes. It’s fantastic to know the years that I had with him. 

So with that, on to the show. Now for the Question of the Week, this is going to be a little bit different because I happened to be online and I saw a posting from a fellow AS person in Australia named Tieran Brownlee. He posted an article, now I'm going to butcher this so up front, I apologize, but it is from the xinhua.net, and I'll have a link to it. So don't try to write any this down. It was dated December 7, 2019 and it says Scientists uncover potential nuclear of “bamboo spine”, otherwise known as Ankylosing Spondylitis. So here in Taipei, team of scientists from Taiwan uncovered how the human gene HLA-B27, triggered Ankylosing Spondylitis, which might lead to symptoms of bamboo spine, leading them to find a promising new cure for the disease. Can you believe that? The words Ankylosing Spondylitis and potential promising cure don't even seem like they should be in the same paragraph. So a collaborated research team led by a Dr. Lin Kuo-i with Genomics Research Center of the Academia Sinica in Taiwan, and they found the gene HLA-B27, triggers a miscoded protein response, and then a series of abnormal signal transduction, which eventually causes an isozyme called “tissue-nonspecific alkaline phosphatase” (TNAP) to be highly activated. The elevated tip was demonstrated to be the cause of bone like cell formation around a person’s spine, the research team sent a press release. So that's the extent of the article I'm going to read. There will be a link in the show notes to it and I would encourage everybody to read it. It really caught my eye because farther down you'll see that researchers have found that two existing medicines that are already out there to treat items may be possible cure for Ankylosing Spondylitis. So they may have stumbled across something. As they look at this, we don't know. It's from China. It's not anything that's apparently maybe cleared through the FDA. So it could be years and years and decades away. We don't know. But it's definitely an interesting article to read. So I hope you all go out and read that article, and I'll have a link to it. 


Now, on to the main topic of today, this week, as I was looking through some ideas about what to do for the show, I happened to be going through one of the Ankylosing Spondylitis forums online and I saw some people talking about you know, I hate it when somebody says this, right I hate it when somebody says that in relation to Oh, my back is bad or Yeah, I had AS but I cured it. You know, people say the craziest things to you. I generally like to think the best of people in that they aren't trying to be mean or be off putting their generally trying to be helpful. They just realize they're not being helpful. They're actually being a pain in the rear sometimes. 


So I have to come across this article by Ricky white. That name sounds familiar. I did an interview with Ricky few months back for the show. He has Ankylosing Spondylitis. And the last episode, we talked about his book called Taking Charge - Making your Healthcare Appointments Work for You. So the article that I came across was in healthline.co, and again, I'll have a link in the show notes to this. So don't worry about copying it down is called; Five Things I'm Tired of Hearing about Ankylosing Spondylitis. We all know that unless you have Ankylosing Spondylitis, you're never going to know what it's like. You might have people that can be somewhat empathetic, but they're just never going to quite get it. And they shouldn't because they don't have it. So as I looked at these different things Ricky wrote about I thought I wanted to take the article, and go through it and bring my perspective to it and hopefully that helps you guys. Maybe bring a smile to your face, maybe make you shake your head and say, “Yep, I know people like that”, but I walk hunched over I walk with a cane. As I've said, Before I tell everybody that I, I can tell you exactly what's going on the floor in front of my feet. Because that's where I look, I don't walk standing straight up. 


Number one, Ricky says is, “How's your back today?” I get that question a lot. You know, everybody will say, Yep, I had a bad back, I had this. Yeah, you know, I'm not trying to take away your issues. You might have pulled a muscle, you might have done something you could have been quite severe and you had back surgery. I don't know. So I'm not going to take away from anything you've dealt with. But don't try to minimize what I deal with for myself and most of us that have Ankylosing Spondylitis, it is motor function. It's actually our pain is deep down in the bone of the spine, the rib cages, shoulder blade, the neck, all of it. So it all comes into play for us and it's a different type of pain. Then the person that pulled their back muscle and took an ibuprofen or something and you know, hot shower and they felt better in a couple days. So for us AS can be systemic, I always equate if you took all of the enclosing spondylitis symptoms and put them on like a Rubik's Cube, you could twist it up and then choose a side and that's going to be maybe the pain that I have that day. It's nothing that ever lines up. We never solve this Rubik's cube of pain. Sometimes my back is fine, but you know I have a lot of pain in my left leg because of my drop foot. Sometimes my neck is killing me, you know we can have pain in every joint everywhere is ligament, AS doesn't discriminate it attacks anywhere it wants and so all of us are going to have pain in some fashion. But whenever I'm going to have the same pain, wherever now I'm going to have the same symptoms. Ricky's lays it out really well and you all can very well know when you're in pain, what's in pain, and how it affects you? But again, you're going to hear people that say, how's your back today? 


Number two fatigue, he says, “Yeah, I used to get tired a lot too.” I certainly understand what he talks about this, AS makes me tired as well, but tired is different than fatigue. Even though the dictionary says they are synonymous. If you're tired, you go take a nap, you can go get a full night's sleep, whatever it might be, and wake up refreshed, feeling great and off with your day. With Ankylosing Spondylitis, we deal with the fatigue, which is just the 24 hour a day grind our body is doing against us to fight any inflammation and that fatigue works itself out in terrible sleep patterns. You might only get two or three hours worth of sleep in a bed, then need to go into a recliner for a couple hours then back in the bed. So you never get that, that solid night's sleep that you need. There's all sorts of ways that this fatigue comes out and it could be that you know, I know for myself when I was working for full time job come two or three o'clock in the afternoon, there's some days when just staying awake was almost impossible for me and people would not understand why I was so tired and here I'm using tired and fatigued synonymously. But it was not that I was tired and not getting a good night's sleep, or being that I was staying up and partying or something like that. It was all based around this constant, never ending inflammation battle that was going on in my body. For many of those years, I was on no medication besides Celebrex, which did very little to minimize it. So yes, we have fatigue. It's much different than tired. All of us deal with it. So if somebody comes up and says, Oh, yeah, I get fatigued as well. Just you know, roll your eyes, nod your head, thank them so you understand whatever and move on. 


Number three; you've been fine all day. “Why do you need to sit down now?” Well, in my case, I again walk with a cane. So I say this a lot of the days, but I need to get up and move to keep that activity level going. So there's many times where those of you who don't work a sitting type job like I had, you go and go and go all day. A mother chasing kids or a dad chasing kids or any of that, you go, go, go all day, and you hit that wall where it's like, my body can't do anymore, it's done. I have to sit down, I have to rest, I have to get off my feet. I have to give my shoulders a break my back, my hips, whatever it is. You need to be able to take that time for you and sit down and if the people don't understand it, you know, they don't understand that you've overdone it, that's unfortunately something they're going to have to deal with. You know, they're going to look at you and say, I still got a lot of gas in my tank to go let's do this. Let's go hiking. Let's do this. Let's do that. A lot of times don't they understand where we just hit a certain point. We're done where that played out. 


For me a lot of times it was in social activities. I wake up in the morning, by the time I took my shower, my meds were kicking in, and somebody would say, hey, you want to go out and do something tonight after work? Well, at that point in time, it sounded fantastic and I was good to go and felt good and was happy to go. Fast forward to 4:30 – 5:00 o'clock in the afternoon and I felt like a train just hit me. I was beat up, exhausted, fatigue kicked in medicine might have worn off to a degree and my body just said, No, you're done. Well, then I would have to tell that person. I'm sorry, I can't go tonight. They'd be like you were fine this morning. You know, what do you mean you can't do this. I have to say many people didn't understand that. But I had a couple of really good friends that completely got it and were very, very accommodating and making sure that if I wanted to go somewhere after work, they would make sure to maybe drive so that they could drop me off at the front of the place like say a restaurant for dinner or something they would drop me off at the front that they would go Park and come back and so those folks were always fantastic and were great to deal with. It's people like that make you still want to be able to get out, even try to fight through the pain and have some social life even though many nights I still didn’t want to.


Number four, “Have you tried?” This is my absolute favorite one because it just lets all the things come just rolling out. Have you tried bee stings? Have you tried ant bites? Have you tried this? Have you tried this spice? Have you tried that, it's just crazy the things that get thrown out at and some I've tried some, they didn't work, some I have no intentions of trying because I've found a medication that works for me. You might want to try it holistically. I entirely support you trying to treat yourself any way you want, but don't tell me that I'm wrong for the way I treat it. And I won't tell you you're wrong for the way you treat yourself. So again, it's all sorts of crazy stuff that from legal to illegal that people will tell you. It could be go to chiropractors. This is a big one and chiropractors might work for some folks that have little to no fusing. For people with Ankylosing Spondylitis, you are told to stay away from chiropractors. The manipulation can cause damage with my fused spine. A chiropractor would be in most cases nuts to even consider working on me, but I don't go to one, but that raises a lot of issues on the board. So you know, if you have had luck with it, and your chiropractor works for you, that's great, but don't tell me or generally everybody else that they need to do that. Everybody needs to choose what's applicable for them. You know, same thing with the diets or supplements, or anything else, you can thank the people for their help, file it under the get rid of or it might be something that interests you and you run across somebody that's really got some good further data, and ideas for you to look at. So even though the “Have you tried?” might be negatives a lot to you, it doesn't mean you're not going to uncover a nugget in there that really turns out to be something that's helpful. So just make sure that when you look at items, and Ricky puts this great, it's “thank you for trying to help. It's kind of you, but please don't insult my intelligence or my team of doctors by insisting I try your magic beans.”  With that said, you're going to have to learn how to deal with the folks as they come up and many times again, they're not meaning anything negative by it, but you know what's best for you, your doctors know what's best for you. So deal with that and, you know If it sounds too good to be true, it probably is. 


Number five “You don't look like you're in pain.”  That's one we get all the time, at least I know I do and I walk hunched over on a cane. You know, the article says, “you're probably trying to compliment me, I get it, but often it feels like you're insinuating I'm lying about my pain levels.” When you're in pain every single day you get used to not showing it. I know I do. I like to think that my threshold for pain is extremely high because I've spent so many years masking what I deal with and many of you are going to be like that as well. We all mask these huge levels of pain, so that everybody around you thinks that we're okay. “Sometimes I just want to look in the mirror and not be reminded of the turmoil and torture inside occasionally just need to pretend to be, ‘normal’ so I can cope.” I've been there, it goes back to the same thing where you want to go out with your friends, you want to feel like you're being a good spouse, or being the best father or mother to your kids and not feeling like you're letting them down because you can't run to the park. We as people with Ankylosing Spondylitis and many other chronic illnesses, we beat ourselves up enough trying to limit what everybody else sees. So that I think a lot of us get wound tight. Everybody's going to be different. I know sometimes when I hear that it's like nails on a chalkboard to me, you know, again, I like to think that people are not saying this to be mean. I like to think that they're doing it to try and compliment me, but many times they take it as a backhanded insult. 


So what's the takeaway with all this? It's easy to get frustrated and annoyed by suggestions, comments, questions that we encounter daily, but we have to sometimes learn to turn the cheek. Anyone who says one of the above to you. 


I hope you all have a wonderful end of 2019. I look forward to going into 2020 with everybody. It's been great to hear from everybody. So don't hesitate to reach out to me via The Ankylosing Spondylitis Facebook page or The Ankylosing Spondylitis Podcast, Instagram page(@as_podcast). I love hearing from everybody and you guys have a wonderful day.


http://www.xinhuanet.com/english/2019-12/07/c_138613917.htm?sfns=mo&fbclid=IwAR1Aq16zOdqNooO0KztpySRPEA3JoBuVH1BBFYo8GetIibdreIHulmJri_k


https://www.healthline.com/health/beyond-back-pain-with-as/5-things#1