The Ankylosing Spondylitis Podcast

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Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I'm really glad that we can connect and discuss these topics on Ankylosing Spondylitis. So first I wanted to read a new review I got from Susan in Tampa, in the United States. She left a review on iTunes for the show and she said, “I was very glad to hear Jayson talk about dating. My experience has been upsetting in that many men are unwilling to date or go further after the initial meeting, mostly due to the cane and the disabled appearance. I just want to stay in my house and not put myself out there. Well, thanks for all the great information, Jayson.”  Well, Susan, you're welcome. I can certainly understand. As I've said many times I walk with a cane I'm hunched over from fusing and my back and neck. And so you know, I don't give off this great appearance of virility at all. I come walking up and I've had some women leave right as soon as I've walked up from the date without even saying more than Hello, once they see how I walk, so I can certainly understand it's not a good feeling. It makes you you know, we already as folks with Ankylosing Spondylitis can be dealing with feelings of rejection. So then when it happens from a complete stranger who you may have had some conversation via text maybe over the phone, thinking, Hey, I kind of get along and then to have that happen. You know, I certainly understand or there are the first dates but there's never the second dates. So Susan, I completely get it. Thank you so much for the review. If you're listening to this episode, contact me through the website spondypodcast.com on the Contact link. I've got an Ankylosing Spondylitis Podcast decal that I'll shoot out to you. So anyway, I really appreciate that review. Today's Question of the Week is actually going to tie into the entire episode. As I was reading through the forums on Facebook, one of the messages came out and it struck me as very relatable and it was from a young lady who was in a relationship and anytime she had something wrong related to Ankylosing Spondylitis, the other party not necessarily one upping her but saying, well, yeah I have this, you have that I have this you have that I have this. And well, neither party was wrong in expressing how they were dealing with their different ailments, the real issue boils down to one party, the person with Ankylosing Spondylitis wasn't getting the support that they needed. And that really is the crux of a situation I think a lot of us deal with this in relationships, whether they be intimate relationships, parental relationships, or work relationships. There are certain things we need for support from all the parties, different ways, but there's also certain ways we need to handle ourselves. So I wanted to kind of jump into that and this could be a little bit of a longer episode than normal. So I thought I would just kind of combine the two as we all know, having any type of chronic condition like Ankylosing Spondylitis or any other number of conditions can take a toll on not only our physical well being, but also our psychological well being. And I think the physical well being we can recover from and push forward through. Its that psychological well being that can be very, very difficult to correct, move forward, and overcome. And that's what we'll talk about to a degree today. So for anybody that's listening, that might be a caregiver or new to what Ankylosing Spondylitis is, in its simplest form, it's a type of arthritis that creates inflammation in the body. Generally thought of as affecting primarily the spine of people, the vertebrae, it really will connect and attack anywhere that there is the connective tissues and bone. Mine started off really, really heavy in the hips, move to the spine and other areas, but we're all Different it's going to affect us all different. So you know, over time, this long term inflammation can create new pieces of bone that form of the spine, which causes you know, stooping, hunched over bamboo spine, it's called impair your mobility. For me it has restricted how far I can walk, how I walk, and I know that if I'm going to walk long distances, I need to take my scooter with me or make arrangements to have a scooter on site that I rent or whatever, when one person in relationship has Ankylosing Spondylitis. You know, it's really a challenge for both people to have to deal with both parties have to really work hard at sustaining both physical and emotional closeness. “As the condition progresses, illness can become all encompassing and overwhelming and structure and support are essential to navigate the demands.” Kristina Brown, doctorate chair and Associate Professor in the couple and Family Therapy Department at Adler University in Chicago. Here are five common relationship issues you may face when you have Ankylosing Spondylitis and hopefully some tips to help maintain a healthy partnership. Number one, You feel like you can't talk about the condition. I can certainly relate to this. A lack of communication can hinder any relationship. We all know that, I've been married and divorced a couple times. So I've been there done that so to speak, but “it can become especially detrimental when someone is dealing with a condition like Ankylosing Spondylitis. You know, it doesn't matter how long we've been together as a couple. We still need to ask directly for what we need”, Brown says in the context of Ankylosing Spondylitis, this can be being clear about whether you want your partner to attend a doctor's appointment with you, for example, and I know this partners are not mind reader's, when you're dealing with your partner. Don't expect them to know what you're dealing with emotionally, physically and pain wise. I would always say with my last wife, I was very direct about what I needed from her. It was helpful, accomplishing something, I was very direct and saying, hey, I need you to help me with this, if you don't mind, I just physically can't do it can't do it alone might be that I also had to let her know, look, I don't need help with this. I know you're trying to help me in this particular instance and while I appreciate it, and I'm grateful for you trying to help me with it, please just let me do it. So you have to address that with your partner, whatever is the best, most appropriate way for your communication level with the partner? If you're not at that point, if you have not let your partner know what you need, please do Don't get mad, build resentment up because you think that they know you need help with this, whatever this is. You have to be very direct, very blunt, yet not rude, not mean, not any way but here's what I need to be able to function properly. Here's what I need to get whatever. So make sure that you're just very direct. Don't try to think that they're going to guess what you need and don't avoid the topic. Even if it becomes, you don't want to become a burden can create feelings of distance and a lack of closeness. Don't sit there and say, Oh my goodness, I'm going to be a burden on this person for the rest of their life. And they're, they're never going to be able to handle this. Don't sell them short. You don't know what they can handle; you don't know what they're capable of stepping up and doing. So that all goes back to communication. Let them know what you need, what you are capable of, and watch what they're capable of doing. Some are going to rise up to the occasion. Others are not, it's better, you know that while you're still functioning, and then you both could go your separate ways if that's what needs to be done. Again, find a happy medium, you don't want to just always talk about you know, your back pain or your lack of mobility or what you can't do, you know, make sure that you also talk with them about what you can do what you like to do what you think is still doable in your new condition as You learn about Ankylosing Spondylitis Number two, Your partner's not sure how to help. This is kind of what I talked about to number one as well, but it should expand on it, your partner won't always know what you need. They're not a mind reader and this means that it's up to you, the person with Ankylosing Spondylitis to be very clear about what you need help with when you need help. And when you want to be or can be independent. This way your partner is going to know what you need help with what you generally like help with and what you generally can do on your own. But again, all that can also change at any given time. So you might say, Hey, I have no problem with my Ankylosing Spondylitis doing the dishes, I'll do those will you make dinner, whatever the whatever the arrangement is, but then there's going to be that time that your back is killing you and maybe you can't do dishes and you go and ask your partner Do you mind cooking but do you mind you know, cleaning up after the meal and it's just that conversation that you have Dad with some of my back is hurting today I I my hips already today, whatever and be very comfortable and open about approaching and discussing your limitations at that given time. I think that's it, at least from my perspective as a man much harder for the man to do. It's much harder for me to admit that there are things that I can and can't do. And I had that issue with my ex wives all the time, which it was very hard for me to sit there and say, I can't do this. I, I can't, whatever I can't is. So that created some resentment, some issues in the relationship. And we know that communicating responsibilities, like the physical tasks that you can no longer perform due to impaired mobility, if you tell them that can help to minimize any tension or resentment in the relationship. And it will also hopefully, if you're very forward and very communicative about what you can and can't do, you and you do the things that you generally say you could do, it will make your loved one fell more like your romantic partner, your partner in life and not just a caregiver for you. Number three, Impaired mobility may limit activities you once enjoyed together. This one is very, very close to me because of the issues I dealt with walking on a cane and having a drop foot so I wear a brace. I have a scooter which makes my mobility issues somewhat mitigated but it's also a different it's not the same as being able to walk together when one of us riding a scooter. So anyway, Ankylosing Spondylitis as we know can make it difficult for getting out and doing and enjoying activities that you might have done as a couple one time whether it be hiking or go into a shopping center together or the grocery store together or just anything that involves, you know, walking any long distances, being the person with Ankylosing Spondylitis, you know that you don't want to really get out there and aggravate your hips hurt yourself. You know that that two hours of movement could cause 2,3,4 days where there is pain, so as a creature of habit, we want to try to avoid pain as much as possible. And that means that we can sometimes limit our interactions with others, we can reduce our social lives. We all know that we've all been where we get up in the morning, we feel fairly good. Have every intention of meeting friends after work, or later in the afternoon to do something. And 5,6,7 hours later, you're emotionally and physically exhausted. And the idea of then going out and trying to put on a happy face to act like you're having a good time when inside you're dealing with a ton of pain just doesn't strike many of us as being a fun event then. So it's done in common, pick up the phone, call, text, whatever and say, I'm real sorry, I can't make it your friends if you haven't had that explanation or that discussion with about what Ankylosing Spondylitis is, they may have hurt feelings, because they've been waiting all day for you to go out. They don't understand and some resentment can build up there where maybe they don't invite you out the next time. And it's just becomes this cycle of isolation. And we tell our partners go ahead, you go and do it, I'm not feeling well go out, have fun. And that puts our partners in a position possibly where they start to feel guilty going, I'm going out, I'm doing these activities, I no longer have my partner with me and it puts some guilt on them. Maybe there's times I know that even though I felt horrible, I've had to kind of, in my mind, say, I gotta suck it up and go out and enjoy this evening as best I can have as good a time as I can. And just deal with the pain that comes along, if it comes along afterwards. So I just have to deal with it. So you kind of got to, or at least, I would hope you try to make some effort to not completely isolate yourself because maintaining those social connections is important, I think psychologically, which I talked about earlier, that once that barrier comes down, and we start to isolate ourselves. That's what the real damage is from and can start to take place in our mind. So, you know, make sure explain to your friends and family, what your limitations are, make sure that they understand that there's some get togethers you can attend, there's some you can't. And if your family and friends are not supportive of it or or think that you're making it up, maybe it's time to find some new friends. You really can't find new family, but you can limit your exposure to them and maybe your partner's family, you you spend more time with them if they're more supportive, and just find ways that are beneficial for you to have a good time within the capabilities that you have to act on this new, you know, new norm, this new way of looking at what as allows your body to do and not do because we all can think this is what I used to like to do, but I may not be able to do it anymore. Good example. I love to hike, used to love to hike, go anywhere walk, Ienjoyed it. All I wanted to do was hike, even though I had been affected by AS in my hips when I was young and had hips replaced, I still liked to go hiking. So maybe, oh, six years ago or so, my ex-wife and I, we were in Arizona, and we stopped at this trail we wanted to we're going to just walk as far and she was great. She really very rarely gave me much flack about my condition. And so we decided there was a Bell Rock in Sedona, Arizona. Nice easy trail. We could walk easy How was that? my cane said let's go as far as we can go. So we walked maybe 100 yards. Do you want to go back? Now? Let's keep going. We kept going. We got 2,3,4 hundred yards. We kept going. She kept looking at me. She goes Are you okay? You're going to be okay because we got to every step you take this way is one footstep you got to take back to get to the car. So Nope, I'm good. I feel great. Love the Arizona weather. It's dry. It's cool out. Let's go. I'll tell you I don't know what I want. I can't go any further. say okay, so we got all the way to the end of the group trails. It started to be rocky rough. I think we should go back. Nope, not go back. Let's keep going. We ended up walking four miles round trip that day, two miles up. Matter of fact, we got so high up on the side of Bell Rock, that people would see me coming at them with a cane and look and go, how did you get up here? I climbed, there was many spots where I'd put the cane up on the top of the rock and just go as best I could. And that was before I was wearing a brace. I was really dealing with the drop foot and having the issues of having to pick my foot up and have a weird gait. So I did it that day. I felt great. I paid for it a couple days afterwards. But it was so worth it to me to be able to enjoy it to get up there at the elevation we got up to and just get back to what I enjoyed that I didn't care about what the ramifications were going to be in the future. So there are times when you're going to feel like that. Let your partner know and just let them know we're going to do as much as we can. Same thing I did when I walked a lot around New Orleans. We took the trial into the French Quarter. And we walked basically a big circle around the French Quarter from the trolley, all the way down to Cafe Du Monde over up another street through Jackson Square, just a great time. And we walked a long ways that day. I was exhausted by the time we got back to the hotel room, but it was so worth it because I got to experience the French Quarter of the way I wanted to not on a scooter, but actually just walking it today. I don't think I could do that today. I'd want the scooter but at least I can say I did it. And for me that psychological victory is what really matters. And my spouse at the time she was fantastic with being very accommodating and understanding that we need to stop, we need to break, I need to sit down. So again, that was really a great trip for me. Number four, You may need to redefine intimacy. One of the things I would first suggest you do when you're looking at intimacy is if you have not read The 5 love languages. That would be the first step I would send you out to do. I know that that is been around for a long time and you may or may not agree with it. But I think once you define what it is that each person finds important in a relationship, then you can then work to build your new intimate life around that. And so I'll have a link to the five love languages in the show notes. It's an easy book to buy, whether it be audible or on amazon.com. So I'll have a link to it through there. And I would encourage you to read it if you have not checked it out from the library, whatever. But I think it's a very valuable book as you look at redefining intimacy once you know what each person finds important that can help you to build upon that and come up with what a new normal might be. In regards to intimate situations Dr. Brown says, “First, we have to expand the definition of physical intimacy and then look for creative ways to add to a couples definition. Touch and closeness are important parts of maintaining physical intimacy. This can start with, whether it be kissing a caress of the face, a hand on the back or the knee. Or for some people just being in the same room, you might be doing different things, but you're just in the same room that can all start to build upon that intimate time you'll share later on.” You also have to know that and understand and have that conversation with your partner that having sex may not be as easy as it used to be, particularly because, you know, certain movements can aggravate Ankylosing Spondylitis, but it is possible to stay close and then keep up a healthy and intimate physical relationship despite any limitations. And here's what I'm going to suggest that you go back and...
Jayson:Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm very lucky today to have on Dr. David Fox. Dr. Fox is one of the co-chairs of the University of Michigan's Autoimmune Center of Excellence. Dr. Fox has been a rheumatologist for a number of years, a member of the medical school faculty since 1985, Dr. Foxx is a professor of Internal Medicine, and from 1990 to 2018 was the chief of the Division of Rheumatology with the University of Michigan's medical school. You've gotten your undergrad from Massachusetts Institute of Technology and your Doctorate from Harvard Medical School. So fantastic training as you then jumped up to University of Michigan, Where you work through all the different wonderful areas that the University of Michigan's medical school has to offer. So, Dr. Fox, glad to have you here and welcome.Dr. Fox:Jayson, thank you very much. I'm very pleased to be chatting with you this morning.Jayson:Something that I find very interesting that you’re involved in is this Autoimmunity Center of Excellence. As we discussed prior to the conversation, there's about 12 or 11 of those centers around the US at different universities and hospitals. And what is the basic premise of an Autoimmunity Center of Excellence?Dr. Fox:It's a group of investigators that are conducting research in the treatment of autoimmune diseases and also trying to understand causes of autoimmune diseases. And these include forms of arthritis, other rheumatologic diseases like Lupus and Scleroderma, and autoimmune diseases that are in other areas of medicine, like for instance, Multiple Sclerosis, which affects the brain. Different centers have specific projects and clinical trials that they're working on. But a very important part of this Autoimmunity Center of Excellence or Ace program, as it's called, is that the different centers have a chance to meet a few times a year and interact with each other and have what are called collaborative projects where we get to work together with an experts at other institutions and benefit from their knowledge and hopefully they benefit from ours.Jayson:Now what I find interesting and these Autoimmunity Centers of Excellence, the ones we're talking about that you're involved with are all in the United States. Is there cross-country collaboration, like do you as doctors and researchers work with folks say in England or Australia or Canada, anything of that nature?Dr. Fox:Yes, we do. Not necessarily directly within the framework of this Ace program, but in other aspects of our research. We certainly work with physicians in other countries. One way that that occurs is in some of the clinical trials, particularly in our scleroderma program. Many of these trials are international trials. It's a rare disease. So we may need quite a few centers to Join up in a clinical trial to recruit the number of patients needed for you know, useful study. So we have collaborations with our colleagues in Europe and in Canada and occasionally other parts of the world.Jayson:Interesting. Your background, I know you've really focused on Rheumatoid Arthritis and the Scleroderma. Dr. Fox:Yes. Jayson:When we look at those diseases, how do they cross over into fields of say, like research for Ankylosing Spondylitis? Or can something that happens in Rheumatoid Arthritis say; oh, wow, this may or may not work for AS let's try it on AS patients.Dr. Fox:Yes. So there are similarities and also differences between these various diseases and sometimes we find out more about where the similarities and differences are by trying new treatments and seeing what works. So for instance, if you look at TNF blockers, so these are biologics that inhibit the action of a molecule called TNF (tumor necrosis factor) Those TNF blockers are useful not only in Rheumatoid Arthritis, but in Ankylosing Spondylitis as well. There are other biologics that may be useful in RA but not in Ankylosing Spondylitis or vice versa more useful in Ankylosing Spondylitis, but not RA. Both of these forms of arthritis are considered autoimmune in that cells of the immune system are inside the joint linings or instructors adjacent to joints and causing inflammation and eventually damage in those areas. And these are locations where the immune system generally does not take precedence. But the details of what's going wrong are somewhat different if you compare these two forms of arthritis and that leads to areas of difference in terms of whether some treatments work in one versus the other disease.Jayson:Oh, interesting. I use myself as an example because I've dealt so long with Ankylosing Spondylitis, the general rule from the best I can see is that it's thought of as a disease that primarily affects the spine. In me the spine was really a secondary area that was affected. Mine really attacked my hips when I was really young and resulted in multiple hip replacements in my early 20s, just because it had so gone after the cartilage around the hips so bad Dr. Fox:Well, it can certainly do that. And we think of Ankylosing Spondylitis and most patients as being worse than what we call the axial skeletal joint the joints that are near the center of the body like the spine or the hips. In some patients with Ankylosing Spondylitis you can get involvement of the hands and feet as you do in Rheumatoid Arthritis. In Rheumatoid Arthritis, the spine can be involved but only the cervical spine. In other words, the neck the lower parts of the spine are not involved by Rheumatoid Arthritis, but are frequently involved by enclosing spines So, one really interesting feature of these different forms of arthritis is that they have an intrinsic kind of map to them as to which locations they go to and and which they avoid. And that's one of many things that we'd like to understand better, but yet have only, I would say, very fragmentary clues as to what's going on.Jayson:Yeah, I've talked with my Rheumatologist who has since retired Dr. Morton, and it was really interesting. Again, when I was diagnosed, there really wasn't any biologics, and it wasn't until the early 2010’s that I was offered and tried out my first biologic, which at the time was Enbrel had short success with it just not long term. So like many the Rheumatologist I was seeing moved me to Humira kind of the same thing and neither worked long term for me but I did feel some relief while using them both for maybe six months to a year on each medication and then stopped. I stayed on Celebrex, which I had been on since it's basically was rolled out. And it wasn't until 2017 that I tried Cosentyx and to me that was a game changer. I had never felt better than when I took that Cosentyx. And I just found it really interesting that my body reacted really well to that I IL-17 blocker. Whereas the TNF didn't do much for me long term and it's one of those mysteries with biologics, you just have to trial and error.Dr. Fox:Well, to a great extent that's true. And we wish we had a more reliable and systematic way of picking the best remedy for each patient on an individualized basis right at the start, and we need to do that is improvement in what are called biomarkers. In other words, things that we can test or image or measure that will tell us this patient is going to respond to a TNF blocker better but the other patient is going to respond to an IL-17 blocker better. And so we will individualize that treatment in that way, to a large extent this biomarker based selection of treatment has already come into play in cancer treatment, not yet very much in rheumatic diseases. But I think that's going to happen over the next five to 10 years. And so treatment will become more systematic and not just a matter of trial and error. Jayson:Well, Dr. Fox, how do you do that biomarker testing? Is it just through a blood test? Or is it more indept in that I'm not sure how that's done?Dr. Fox:Well, there there are many kinds of biomarkers ideally, for practical purposes, you would be able to do it through blood tests or urine test or or x-rays or other kinds of imaging in the cancer area. Of course, the frequently the actual tumor tissue is available and the biomarker tests are often done on the on the cancer itself. In the case of arthritic diseases, sometimes we have joint flow or sometimes we can take a biopsy from the inside of the joint. But we don't typically have a large piece of tissue, as the oncologist do to do all sorts of tests on so hopefully we will get some biomarker tests that can be done through the blood that reflect the specific pathways that are going on in the inflammation in that patient's joint tissue and then based treatment on that. And so the NIH has organized an initiative called the AMP that stands for Accelerated Medicines Partnership, and that's funded in collaboration with a number of pharmaceutical companies and they initially focused on Rheumatoid Arthritis and Lupus and have come up with some pretty interesting results about immune mechanisms and those diseases that can be measured through biomarker tests and that may be guides in the future to new kinds of treatment and personalized individualized treatment. And so there's discussion about the next phase perhaps, of this and collaborative and that type of approach, I think is is going to move the needle and get us more towards where we'd like to be in terms of picking the right treatment for the right patient. Jayson:Any breakthrough in Rheumatoid or any of those can potentially lead to breakthroughs in the other forms of autoimmune issues. So it's great to hear that as a patient, it might not seem like much is happening, but behind the scenes, it sounds like there's quite a bitDr. Fox:There is quite a bit and there's another branch of the NIH called the FNIH, Foundation for the NIH and this is a branch of the government that is undertaking research that is funded not by taxpayer dollars, but by contributions from pharma companies and philanthropic contributions and one of the programs in the NIH is a biomarkers program and within that program, there is a sub program about immune mediated diseases and in fact, there's a project being organized through that program specifically to come up with biomarkers in Ankylosing Spondylitis and Spondyloarthropathy. And that's in collaboration with the patient organizations that are involved and invested in Ankylosing Spondylitis research. So they're at the table on on this also, along with some academic centers that work very hard in the Ankylosing Spondylitis area. So you'll be pleased to know that we're soon hoping to launch a specific new biomarkers initiative in Ankylosing Spondylitis.Jayson:Oh, interesting. Oh, yeah, we'll definitely keep an eye out for that. Another area that you really focus on, I believe, if I understood this right was autoimmune eye diseases.Dr. Fox:Well, we've done some work in autoimmune eye diseases as well. There are several kinds some involve the retina which is the back of the eye. Some are called Uvitis which means inflammation of the inner structures of the eye but in front of the retina, many patients with inflammatory arthritis or other systemic autoimmune diseases like Rheumatoid Arthritis or Ankylosing Spondylitis, they can get eye inflammation Also, sometimes it can be pretty serious and the eye is a special zone in the body that normally is protected from immune attack, but in some diseases, something happens to break down the barrier that defends the eye and the immune system can get in there and inflame the structures of the eye. It's a very important aspect of autoimmunity and yes, we are interested in that.Jayson:Uvitis/iritis is very common in people that have Ankylosing Spondylitis? Yeah, I haven't had a bout of it in a while. But I've noticed that like many things, the older I get, the longer it takes me to fight it and get rid of it with the last bout being around for a good six months.Dr. Fox:Yeah, six months and and the iritis is quite painful as well. So you know, it's a significant problem.Jayson:Yeah, my first bout of Iritis, nobody knew what it was, was treated as pinkeye. And you know what happens three, four days later, it's not cleared up. And it's only substantially worse, I happen to go to an emergency room. And luckily there was a Ophthalmologist there and he came walking in, he looked at that, and he says, Oh, you got a hot one there. He said, you're not gonna like the treatment that I got to do to fix this, but we're going to get it under control. So we did everything that was done. This was in the early 90s. And it's been a few bouts since but I try to tell everybody from a patient side, even if you've never had I read us or uveitis to make sure you get a good Ophthalmologist on speed dial that understands that if you call them it's an emergency that you need to be fit into their schedule.Dr. Fox:Yes, we need specialized pathologic care for these kinds of eye diseases. They have the equipment to exam the eye properly and the knowledge to ask assess what's going on at least in ankylosing spondylitis, you know when your eyes inflamed because it's bright red and very painful. But uveitis can be sneaky and be deeper in the eye and not as painful and not as red but very dangerous. So patients with juvenile forms of arthritis, they frequently have Uvitis that has no symptoms, but can cause blindness and so children with that kind of arthritis where there's a risk of that kind of up if they have to see the Ophthalmologist every three months. That's how dangerous this condition can be. So yes, the eyes are a very important target organ and we definitely pay attention to that. Jayson:Wow and see again, I was not even aware that it could be that severe. I mean, I knew it could be severe but I didn't understand kids because I never had to affect me and nor did I know anybody that it could be that intense that directed where a doctor needs to be seen that often. So that's that's really interesting. Dr. Fox:The eyes are such complex organs.Jayson:Amazing. Yeah. Well, Dr. Fox, I really appreciate the time you've given to me and to the listeners to talk about some of the things going on behind the scenes. So many times when we go to rheumatologists for our visit, you can sometimes feel like maybe didn't get all your questions answered. I encourage folks to always write down and give your rheumatologist any specific questions, but to get from you a better understanding what's going on behind the scenes. I really just, I can't thank you enough.Dr. Fox:Well, Jayson, you're very welcome. It's really my pleasure to convey some of the excitement and progress that we have in our field. And you know how far we've come in the past 30 years or so. But I like to tell my students we're not quite there yet. Maybe we're halfway there. But for any disease, we want to do more than partially understand it and we want to do more than, you know, partially treated, we really need to aim for understanding the cause the cure, and eventually the prevention of these diseases. And hopefully in the next 30 years, that's where we getJayson:Well, again, I thank you, I think you're being overly modest. And for the listeners, something that's really unique that Dr. Fox, the University of Michigan has established what they call a professorship in Rheumatology, named after Dr. David a Fox. And this is something that in the show notes, I'll have a link to if you should be more interest in it, or want to make a donation to it, leaving doctors coming up future doctors in Rheumatology will be able to apply for and get the David A. Fox Professorship in Rheumatology, I think you're very modest, you know, you're very well liked by what I can read from the colleagues and the information that you have is just from a rheumatology patient.  I can't thank you enough for what you're doing behind the scenes. I look forward to see what future sufferers who have AS will benefit from the research that you're doing today.Dr. Fox:Well, thank you very much. That's certainly our hope.Jayson:Thank you again. I appreciate your time and you have a wonderful dayDr. Fox:You too and be healthy. Thank you. Thank you. Byehttps://medicine.umich.edu/dept/intmed/david-fox-md-professorship-rheumatology-updatehttps://labblog.uofmhealth.org/lab-report/exploring-new-treatments-for-autoimmune-diseaseshttp://www.autoimmunitycenters.org/index.phphttps://www.ncbi.nlm.nih.gov/pubmed/31436036Joy Organics follow link to access CBD learning guide and full range of productsDiscount Code – aspodcast15 for a 15% discount.  Affiliate Links can pay a small commission on any products bought.  It doesn’t affect the price you pay, but will help support the show.
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 jayson@spondypodcast.comThank you and have a great day.https://www.healthline.com/health/ankylosing-spondylitis/resources-for-support
In this episode, I take a basic look at Sacroiliac Joint Pain. In my last xray of these joints, I was totally fused. This fusing of the SI Joints affects everyone with AS at one point.
In this episode, I review an article titled 10 Things Not To Say To Someone With AS. I applied my experiences to this article and I encourage you to do the same.   Mentioned in the show:   https://www.healthline.com/health/beyond-back-pain-with-as/things-not-to-say#1 www.tm.org
Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Again, the show continues to grow by leaps and bounds and we've now been listened to in 54 different countries. I bring that up and tell you all just to share it with you and let you know that this community of us, all of us with Ankylosing Spondylitis, it's huge and it reaches across the globe. So it's really exciting to see when we get a new country come in and listeners from those countries and then sometimes I even get emails from some of those in different countries. It's really great to see that even though we're spread around the globe. We all come together with this thing called Ankylosing Spondylitis and can relate to it. It really makes it seem like it's not such a small thing that that were so alone. That was really fantastic. And let's jump into the question of the week. This week. I saw a person thinking or discussing that they were having a lot of issues with dealing with the diagnosis of Ankylosing Spondylitis. We've all been there; all of us have processed it in a different way. This particular person was very blunt in their writing, which was very good to see, it meant that they had been thinking about it a lot would be my laypersons opinion, they were upset, they were unhappy with realizing that certain things they used to do with ease, they could not do at least to the same standard anymore. And again, I think we've all been there. I know I have, I look at different things. You know, I used to be able to do this so easy. Now it takes me a Herculean effort to take out the trash, something as mundane as taking out the trash. I am on a cane. I have to do everything one handed because I always have to use that cane to walk and that really presents challenges like even something as simple as I decided I needed to clean off my kitchen counters the other day and just you know, do a standard cleaning and wipe everything down. It takes forever because I can't move everything with just here. I'm playing with this hand, put it over here. I've got a good move everything one handed. And it was really interesting to me that I realized it took me almost two hours to clean the kitchen countertops, not because they were dirty, but because it took me that long just to move stuff clean, wipe it all down and then put everything back and I said that probably would have taken an able bodied person 45 minutes tops to get everything done. So I was certainly able to relate to what she was saying and I know in reading from other posts of other folks that get out there and say, Look, I I'm upset about this or upset about that or I missing doing this or I'm missing doing that, whatever that might be. And it's really just something I think that we kind of have to come to grips with Ankylosing Spondylitis. We have to like it. You can fight it to a degree. Some of us are less affected by as than others but are affected differently. Again, everybody's going to have to go through this process as they kind of grieve for what they used to be able to do. Look forward to what they can do, and how best they can do it. I want everybody to be safe, happy. And it's never good having to deal with this, we have a unique position and that we're dealt a poor hand so to speak, but you have to make the best of it. There are people that care about you want you to be safe, wants you to be happy. So I would encourage you to please reach out to anybody, if you're having a down day, build that support network. We've all been there and we all look to be there for each other. So again, I hope everybody is able to best process this as they deal with AS and what they can and can't do. Get a good therapist if you need assistance that way. There's nothing wrong with that. Talk to priests, Pastor, Minister, therapist, whoever best fits your support network of who's going to be able to be there for you. Some times it's best if you find somebody that has AS as well, because we can understand somebody times, it's just best to have somebody that can lend an ear and listen. So whatever that is, doesn’t hesitate to reach out to them and look forward to hearing that everybody is always doing well and is best able to come to grips with the position that as puts them in and what they can and can't do.Now this part of the show is going to really kind of lean heavily towards the American side of medicine, because obviously, I'm in the United States. So I don't understand how the medical systems work in European medical systems or every country has their own thing. So you kind of have to take some of this and apply it to your specific country you live in but when you were diagnosed, how did you put a medical team together? Were you referred to a rheumatologist from your primary care physician? Did you seek out a rheumatologist on your own? How did you decide to go and put this whole team together to help you treat Ankylosing Spondylitis? In my case, my team is my primary care physician, my rheumatologist, an ophthalmologist, and then an orthopedic surgeon. Since I've had multiple hip replacements, yours is probably going to be different unless you had all the same items that I've had. But how did you do that? Now, stay tuned at the end of the episode, I'm going to be giving away three Kindle versions of Ricky White's book Taking Charge: Making Your Healthcare Appointments Work for You, and one audible version of it. So that's in total four items, and I'll be giving them away. Stay tuned at the end of the show and I'll tell you how to enter to win one of those when you look at putting together your medical team. How do you do that? You know, I can tell you how I did it. Mine was really just blind luck. There was no thought process behind it besides, okay, this is where they told me to go. When I was diagnosed. I was only 14 my primary care doctor sent me to a rheumatologist about 75 miles away because that was the closest rheumatologist there was none anywhere closer so what down and after working with him for a little bit He determined that I had Ankylosing Spondylitis and he worked with me from ages 14 to 21. By the time I was 21, I had damaged my hip and brought into the mix was now an orthopedic surgeon since I was going to need a hip replacement. My rheumatologist said, “I'll tell you there's two places to go. One was in Cleveland, Ohio and the other was in Port Huron, Michigan.” Since I lived right there in Port Huron, or near it, that was kind of a no brainer. He referred me to an orthopedic surgeon there, and that's who did both my left and right hip replacement when I was 21 and then 23. It really hasn't been a lot of science in my part, more luck, but everybody's different. The quality of rheumatologists that you run across apparently is quite different. Again, by the time I moved around every time I used a rheumatologist, it was a referral from my primary care physician. One of the things with the book that I'll be giving away the Kindle book is Rick also has Ankylosing Spondylitis. He wrote this book because he had been in the healthcare field in England. In his book Taking Charge, he wrote about, you know, do you often feel anxious or nervous before your healthcare appointments? Do you leave your healthcare appointments, feeling frustrated, like nobody's listening to you? All of these things are going to be covered in Taking Charge. So it's really what I consider a great book and filled with a lot of good information. I found an article called finding a good rheumatologist on ankylosingspondylitis.net (I will have a link to it in the show notes). And I thought you know, we all need to have rheumatologists. I have seen several spots were on different forums, everybody's kind of listed their rheumatologists and the locations to try and help others fine good rheumatologists verse maybe ones that others didn't have such a good interaction with. How can a rheumatologist help you, given that all of us that have Ankylosing Spondylitis or any type of rheumatic disease can experience joint damage that cannot be repaired in some cases or worst case scenario the joint has to be replaced like a hip, knee, you know, shoulder whatever, it's very important to get diagnosed and treated as soon as possible to minimize any of the damage to the joints. Your primary care physician is going to do as much as he or she can before they need to put you over to somebody with a specialty like rheumatology and one thing to remember, obviously, is when you start seeing a rheumatologist, that doesn't mean you leave your primary care physician. I think most of us know that, but those two should work in a great relationship with each other. I find it fantastic, now when I go to my primary care physician, he can see all the notes put in by my rheumatologist, put in by my urologist, put in by everybody, they use the same system that feeds notes. Part of its to help keep people from medication shopping, but the other thing is so that they don't have to rely on my memory of what went on an appointment. They can read the doctor's notes and say, Okay, here's what went on. So I can do this or that to help counter this help make it better, whatever the treatment is that you're going to need. So that team approaches is really the most effective way of making sure that all these symptoms that we deal with from Ankylosing Spondylitis, which are very complex, are treated to the best of what we as a patient need. You know, one thing you look at is how a rheumatologist trained. My rheumatologist that I saw for 30 plus years, he always had a whole series of doctors coming through. So whenever I saw him, there were three, four or five other doctors in training that were with him. I always told those other doctors as we're standing I said, ‘if you take nothing more away from this rheumatology internship, take away the way Dr. Morton deals with the patients. He never forgets that it's a person that could be scared, nervous, whatever the case is just diagnosed upset.’ Dr. Martin never forgot that, and that was one of the most amazing things about him as a rheumatologist is that he understood he was dealing with an individual person and always interacted with you as such. It wasn't just three, four minutes of talking and boom, you're gone. So that's one thing I told all the other doctors really pay attention to his, what we call bedside manner. All rheumatologists must finish four years of medical school, which any doctor will do, and then three years of residency in either internal medicine or pediatrics. Once they've done that they must complete then a two or three year rheumatology fellowship program and pass a test for official certification. While they're doing this many rheumatologists see patients and also conduct clinical research. So there's a number of ways that they can go into rheumatology. They might never deal with patients. They might just stay on the research side, go to work for a drug company or any type of research area. As I've said before, how do you start to find a good rheumatologist? Start with your primary care physician, they're going to know the local rheumatologist and again, depending on your area where I'm at, there's really only one rheumatologist within a 20 mile radius of either side of me so there wasn't a whole lot of choice if I wanted to stay somewhat local. If I want to drive down to any of the suburbs of the Detroit area, I can, everybody's going to be different. So talk with your primary care physician, they're going to know who the rheumatologists are, they're going to have working relationships with some and that may work out to be better for you. That's where you're going to then start to interview these doctors to see who you best fit with. But again, start with your primary care physician. Also, what are characteristics of a good rheumatologist? Not just Ankylosing Spondylitis, but any of these autoimmune or rheumatic diseases are generally rare, can have as you know, unpredictable symptoms and since new medicines are always coming out, one of the things you want to know with your rheumatologist is are they familiar with the latest research and standards of care? Are they dead set in their ways? Because if they are, they might not be the best for you if they're not willing to look at new treatments and new treatment regimes that could work best for Ankylosing Spondylitis. The diseases themselves are complex and a good rheumatologist you know should be able to tolerate uncertainty, be open to collaboration with other doctors and I'd be more than willing to say this is what I understand this is what I think. But we might need a specialist to work with you and be willing to refer you over to that. So make sure and again, every country is going to be different but make sure that rheumatologist is willing to bring in others, whether it be you're having iritis issues and they want to refer you to an ophthalmologist or whatever doctor, you know, urology items, whatever. They're willing to work with other doctors to make sure that you are seeing holistically for your disease. And also, you know, lastly, trust your instincts. You know, when you're talking with the Doctor, do they listen well? Do they make eye contact and look up from their charts? Are they accessible? Is there time in their schedule? Or, you know, are you booking out 6, 8, 10 months because you can't get in before that? Does their staff return phone calls? Is the doctor patient with you while working through options and test to come up with a correct diagnosis because again, everybody's different? There's no cookie cutter approach, treating Ankylosing Spondylitis and are they focused on your quality of life? Do they look at you and say, here's what you're dealing with? How are we going to get you the best quality of life so that you’re AS is minimized as much as possible? You know, those are just a few of the things that you can look at. They all tie in together. And again, when it comes down to trust your instincts, you're going to know when you're talking with the doctor, whether him or her is somebody you think you can work with long term and that you think is going to have your best interest at heart. Also look in the show notes. I'm going to have a link to four different articles on choosing or picking rheumatologists that aren't from different sources. So those might be helpful to you as you go forward and decide is this rheumatologist you have the best for you again Also, don't hesitate to check out the website ankylosingspondylitis.net.And now how to win a Kindle copy of Taking Charge or the audible version. Those will be given out as USA Kindle or the audible. So if you don't use those particular items, you'll want to download the app if you win. So how do you win one or two ways you can be entered, go and like the Instagram page as_podcast on Instagram, and then take a screenshot showing me that you've liked it and send it via direct message on Instagram or show me that you've listened to the show by taking a screenshot of you listening to it on your phone or take a picture of your computer page whatever. However, you can best do that, send it to The Ankylosing Spondylitis Podcast Facebook page, to the Instagram page or to me directly at jayson.sacco@gmail.com again, for spellings and everything look in the show notes and I'll have it all there. Do one of those items, get it to me and I want to put them all in a pot and draw some names and send you off codes to download these books for free or to get the audible for it. So I hope y'all have a great day and take care and good Luck as you work through this disease called Ankylosing Spondylitis.Finding a Good Rheumatologist – ankylosingspondylitis.net - https://ankylosingspondylitis.net/living/finding-rheumatologist/?via=recommend-readingResources from article:1.    What is a Rheumatologist. American College of Rheumatology. Updated June 2018. Available at: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Health-Care-Team/What-is-a-Rheumatologist Accessed April 10, 2019.2.    Sara Altschul. How I Chose My Rheumatologist: Smart Tips From People Living With Arthritis. Everyday Health. Updated February 19, 2016. Available at: https://www.everydayhealth.com/rheumatoid-arthritis/treatment/how-to-choose-rheumatologist/ Accessed April 10, 2019.3.    Making the Most of Your Relationship With Your Rheumatologist. AbbVie, Inc. July 2015. Available at: https://www.ra.com/Content/pdf/14068_RAEnhancements_SeeingaRheumBrochure_R2-62515-yeo.pdf Accessed April 10, 2019.4.    Elaine Howley. How Can I Find the Best Rheumatologist? US News and World Report. July 11, 2018. Available at: https://health.usnews.com/health-care/patient-advice/articles/how-can-i-find-the-best-rheumatologist Accessed April 10, 2019.
In this episode, I cover some of the basics of my process to get on SSDI. My case was unique compared to many, so please do your research if you are applying for SSDI. My information is in no way legal advice, so please consult an attorney for any specific questions you may have.   The place to start is the Social Security Website. Here is a listing of what you need to apply for disability (https://www.ssa.gov/hlp/radr/10/ovw001-checklist.pdf). There are also some good sites that provide disability information. Here is a list of some I have looked at. Please be aware that some of these sites are from attorneys and I am not recommending that you use them. I just like the information that is provided.   https://www.disability-benefits-help.org/cpc/about-ssdi?utm_source=bing&utm_medium=cpc&utm_term=ssdi&utm_content=SSDI%20vs%20SSI&utm_campaign=SSD+-+Phrase&__egma[MatchType]=p&__egma[Device]=c&__egma[Creative]=77790493266508&msclkid=9652b544f2f219c51abae872d4a03694   https://www.spondylitis.org/Spondylitis-Plus/social-security-disability   https://www.disability-benefits-help.org/disabling-conditions/ankylosing-spondylitis   Videos  https://www.youtube.com/user/ginsbergssd
Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's so great to be here. As I record this sitting in my apartment it’s March of 2020 and it's about 55 degrees outside here in Michigan. So I know that's not warm to many of you, but for this winter, it just tells us that now we're starting to head into spring and the warm weather is on its way and man that just makes me so happy. I received another review for the show and I just wanted to read. It is a five star review from the podchaser.com website. And if you ever want to leave a review for the show, if you're inclined, go to podchaser.com. You can find my show The Ankylosing Spondylitis Podcast and then go ahead and leave a review for it. So anyway, this review is from Liquid Soap and it says:Awesome, simply very humane and informative. I love it.I'm glad they're happy with the show. Glad you're happy with the show. I'm glad you're listening. And it's great to have you here today. I want to touch base on something that I read on one of the forums. It's the form called Living with Ankylosing Spondylitis and you can find that on Facebook. This was a posting done by Angela Coplin Robinson back on October 21st of 2019. I finally connected with her and she said it was great to review this. So I've wanted to review this for a while and it really, I think goes to the whole core of everything that we all think of with Ankylosing Spondylitis. I want to just read this because it's so powerful the way she wrote it. I don't think that there's anything really that needs to be changed because it's just, in my opinion, perfect. So I want to read it, and then add my commentary in certain spots, and at the end of it, and I hope this just really resonates with everyone listening because I just think this is perfect. In fact, Angela originally posted this message to her family and friends, and she writes:Tired of walking on eggshells around certain people. This will be quite a long post, but I want my family and friends to know a few things. 1.    I love each and every one of you. I might not go see everyone all the time. But I am battling a disease that sometimes controls everything in my life. When I'm in a flare, I don't venture out and these last few weeks have been hard. Now I'm coming out of one and feeling less defeated. 2.    I do everything in my own time. I clean the house, cook and do normal everyday things when I have less pain and more energy. If you walk into my home and see that it's not pristine. I'm probably in a flare. You all know I love a clean home and believe like modded a place for everything and everything in its place. 3.    My memory is shit. If I say I will meet you or call you back, you can  remind me the day before or morning up. I forget words sometimes and stumble around in my own mind. Please help me remember, I do have a tablet that I write things down on if I remember to look at it 4.    When I tell you that I'm in such pain that I wish God would take me, it doesn't mean that I'm suicidal. I love life and I want to live my best life to see my kids, grandkids, nieces, nephews grow up. Just in those days. I can't see past some of this debilitating pain. Not all days are bad, though. 5.    I hate saying that I'm hurting all the time. So when you ask me how I'm feeling, I may just lie to not be complaining. I heard every single day, but it's a controlled pain. Only during times of flare, I'm in massive pain. 6.    I'm sick of doctors needles, prescriptions, and this disease period. I am trying Remicade infusion therapies on Wednesdays to try and stop the process of ALS or at least slow it down. He'll be tired for a few days afterwards. At the least, this is my last ditch effort to help myself. Please don't tell me my decision is wrong. When I tell you understand that I have researched this chemotherapy drug immensely, and it scares the shit out of me. But I've already been taking symposia. So this is it. I understand your concerns. But I need you to understand that I don't want to live in constant pain. If I don't have to. I'm praying this works. 7.    If I stand up and sit down a lot, and tend to be anxious, it's because I'm having a pain and movement helps me just follow with me and keep talking. lol. I want to talk I need to talk. I'm just a mover lol. And number eight. And finally, if I don't answer your call, please give me a day or two to try to call back. Some day’s exhaustion hits me so hard until I can't seem to muster up the energy to hold a phone conversation. And this goes back to number 3, Memory is Shit. I will say sometimes forget to call you back, or may call you to tell you some, the same thing two or three times. Don't get frustrated with me. Just listen again and act like I never told you. In closing, I love you all so much. I need each of you in my life, not only for support, but for my mental well being. I love to laugh with you. As I start new treatments. I'm asking that anyone that I am in contact with take special precautions to let me know if they're sick or anything. My immune system is weakened. And we'll we can more with the new treatment. We can see each other when you're well. Thank you to my family and friends for listening. This isn't a sympathy post. I just thought it was time to let you all know what was going on and how I'm feeling. I love you all. After I read that I sat back and thought about it a little bit and I really think that Angela has written one of the best pieces about just overall how you do in your life with AS, it's really interesting. Well, we may all do different treatments and have slightly different variations that really covered a lot of how you can explain to family and friends, really what you're going through. And I think this really gives a great outline as to how that somebody can help to support you. If your memory is bad, make sure that they either have you write it down, put it in your phone, add it to a note tablet that's on the refrigerator, whatever, anything that can help to trigger that memory. I know I've said this before to folks. Just the other day when I went down the stairs, got out to my car, sat down and got ready to go. When I realized the whole reason I was going to run the errand was to mail a package and I'd left the package back in my apartment, which meant I had to shut the car off back into the apartment up the stairs, get it and then repeat the process. Now, for some they may say Oh, it's no big deal. Just remember, I want a cane and I walk with a brace on my foot to keep me from tripping. So it wasn't that it was a big deal to walk. It was the big deal that I had just my memory was for shit and I walked right out the apartment right past what I was going to do. And the whole reason is I just forgot how it doubles if you put your keys down and walk around and look forward. I did that the other day walked around, look for my keys couldn't find couldn't find them. You know why? They were in the pocket of my pants I was wearing. It's just little things like that that you'd go. What I never used to do stuff like that. So there's all these different ways that we survive. Have you noticed everybody is talking about CBD oil? With that in mind, I partnered up with Joy Organics. With Joy Organics, you get quality THC free products that are broad spectrum and made with hemp grown in the United States. Its third party tested to make sure high standards are maintained. If you go to the link in the show notes to go to Joy Organics you can order CBD soft gels, tinctures, gummies, and so much more. They offer free shipping on orders over $50. If the order is under $50, shipping is only a flat rate of $5. And they offer you a 100% money back guarantee if you do not care for the product. So again, go to the show notes, where you will find a coupon for 15% off your order. Remember every order supports the show to keep this show going. We're getting a fantastic product for you. That's one thing about people with Ankylosing Spondylitis is we are survivors we overcome. Huge, huge obstacles are put in front of us that a lot of people don't deal with at any given day. And we overcome them. And there's other folks that have issues that are as severe or some cases worse than Ankylosing Spondylitis and I give them kudos for doing that. You know, so anybody that is overcoming any type of chronic illness, chronic pain, chronic fatigue, we're survivors. We know how to interact, how to focus and how to move. You know, she said something about the house is cleaned at her speed, her time and I can certainly understand that. You know, if you walk into my apartment, it's clean, but there is some clutter around and I get to it when I get to it. I spent two hours cleaning my kitchen yesterday. Not because it's dirty, but because I had a lot of stuff on the counter and it just took me a lot of time to move it. Put some stuff away and throw some stuff away. So I got everything cleaned. This morning when I went to get my medication I looked around and said, “Man, it's pretty cool, it's a nice clean kitchen.” Now, had I been able bodied. I'll bet I could have had the whole thing done in 20 minutes. While it took me two hours because I had to stop a couple times. But that just is what it is. We're all very good at overcoming challenges, anything that we consider a life challenge it's put in front of us, we overcome we figure out how to get around it and do it. So as I say that I hope you all can take something away from this. Angela seems like a very nice young lady is very active on the boards you can find her and connect with her and was a pleasure reading that I just, I hope you get some benefit out of my sharing it to you if you missed her original post. So have a great and wonderful day. Again, keep your head up. Go over to spondypodcast.com sign up for the newsletter. If you're looking for, whether it be CBD oil, there's the link there for joy organics or if you need something from Amazon There's the links there for the different items that I posted out any of those pay back. Don't change the price to you but pay back a small commission to me to help keep the show going. I would be so grateful and so appreciative. And I look forward to talking to everybody in the future. Everybody have a wonderful week. Well, see you soon.Joy Organics follow link to access CBD learning guide and full range of productsDiscount Code – aspodcast15 for a 15% discount.  Affiliate Links can pay a small commission on any products bought.  It doesn’t affect the price you pay, but will help support the show.
Jayson:Welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be really a neat episode because I've got James Allen on the line. James is a fellow ankylosing spondylitis person. And James has developed a really cool app called Chronic Insights. And James, how are you doing today?James:Hi, Jayson. I'm not too bad today. Yeah, you know, the usual ups and downs, aches and pains, as we all know, but yeah, today, I guess is about, I'd say, three or four out of 10 on the pain scale, so not too bad. How are you?Jayson:Oh, I'm doing great. Today was my Cosentyx day. So that means we're gonna have a good day. I've learned something new. As people that are listening to the show. I learned a new word and I want to share it and it's called Kip, and I have no idea that that's a British word for taking a nap.James:Yeah, sometimes if you're feeling really tired, you just need to go have a Kip for 10 minutes.Jayson:There we go. What a cool word man. That is awesome. So James, why we are talking is not only just because you have Ankylosing Spondylitis, but I first want to talk about Chronic Insights for a few minutes. Tell the listeners, what is it, what can they do with this app? Because it's really cool, but I'd rather have you tell them.James:So Chronic Insights is essentially, it's a symptom diary. It's an app that I've been working on for about a year now. You can it's available on the Google Play Store, and also on testflight, which is Apple's version of beta testing. So not officially released yet. It's really version 1.0. It's a bit rough around the edges and I'm looking to get people to try it out for me and give me some feedback. And what it does is quite simple really allows you to record your symptoms throughout the day, whether that's pain or fatigue, stiffness, anxiety, mobility issues, any symptom that you want to track. So it's mainly for people with chronic pain or chronic fatigue, people like us with Ankylosing Spondylitis, or other potentially other conditions as well like Fibromyalgia or other forms of arthritis, Endometriosis. I mean, the list is endless the number of conditions which involved chronic pain and fatigue. So you can record say, right now, I mentioned before, I'm probably about three out four out of 10. I can just record that in the app, it's captured. I don't have to remember that. I can also record where on the body the pain is. So at the moment, it's kind of my middle of my back right now, but throughout the day, it shifts and changes maybe it'll be my shoulders layer, or my hips, and so buying, tracking and recording throughout the day, you can then look back on your symptoms and see, what are the trends or the patterns? What are the things that I've trained that have potentially impacted my symptoms? And and what does that look like when you look at the, the graphs and the charts that are available? And what does it look like visually on the body, as are there particular areas of the body, they're affected more or less over, you know, on average. So that's, that's essentially what it does in an in a nutshell.Jayson:As you said, you can record the different items through the day, but you can record them the way the graphs are set up in there. If I'm having pain in my spine, I can actually pull up the copy of a skeleton and circle the spine. If I'm having muscle pain, I can pull up a full body image, not me but just have a representation and circle the part of the body that is hurting so maybe it's your rib cage and it's hurting one day, but it's your Left leg the next day. You can you can adjust and it's not just some, you know, static figure you're able to bounce back and forth between skeletal and muscular pain.James:Yes. I mean, that was one of the main goals of creating the app because there are other symptom diaries out there on the app stores. And I tried quite a few of them myself when I decided I wanted to start managing my my symptoms better, but none of them I found really allowed you to record the location of my of your pain very well. I mean, some apps kind of give you a basic ability to do that, but I just thought they were all they were. I felt like I could make a better one basically, because, I mean, all forms of chronic pain but most forms that I know of the pain is never constant and never changing. It's usually changing all the time. And that's one of the things that is difficult. To manage when it comes to chronic pain is the fact that it's constantly up and down and, and so when it comes to talking to your doctor and tell you know, they they ask you, how have you been? You know, Jason, it's been six months since last appointment we how you've been, and I don't know what it's like for you and I find my mind kind of goes blank, I don't know what to say there's so much has happened. It's almost and I can't remember most of it. I probably just tell them how I felt today or yesterday because that's all I couldn't really remember. But having this visual record of which parts of my body been hurting, to be able to show somebody picture, it's so much easier.Jayson:Well, it seems that invariably almost every time I go to the doctor, I edit, let's say a two or three on the pain level, and even though I do walk with a cane and have a leg brace, you know, there's still a big difference between me at a seven or eight versus a two or three and if I go walk in and feel pretty good. Are you walking If you visit with your doctor and say, yeah, I'm doing I'm doing okay, that doesn't give a true picture if they've haven't seen you in six months a year where the cool thing about this app is right now there's a basic export feature to show your doctor here's here's kind of my pain journal here's here's what I've been dealing with and I think that's pretty cool.James:Exactly I mean, that's that's a such a change with me because it with my own experience of whenever I will go in to see the doctor. More often than not he I would happen to be having a good day, and it was almost frustrating in a way that I would go in. I'd be feeling fine or not fine, but pretty good. I don't know about about you, but my rheumatologist likes to do these measurements while I'm there. So I'll try and touch my toes, bend over and touch my toes. And he'll measure how much my back flexes with a tape measure and kneel measure my chest expansion with a tape measure as well and a couple of other things and I mentioned The doctor's appointment and I'm, and I know I'm doing quite well, because I'm having a good day. It's almost, it's frustrating. So I kind of have an idea. And I do say, you know, by the way, this is a good day. You know, if you did this yesterday or the day before the measurements wouldn't be the same, it'd be much less but all they can do because the yearning see them for this brief fraction over time, all they can do is just magically how you are right then. So another one of the motivations that made me want to create a better symptom diary to help me describe the full picture because doctors only ever see that tiny little slice of the story. Jayson:Speak of the story. You develop this because you have Ankylosing Spondylitis. Tell me a little bit about your journey of discovering Ankylosing Spondylitis, you're dealing with it to what led you up to the creation of this app.James:Well, it started like a lot of people with as I think started windows was very young. So I was 16 years old. And just out of nowhere out of the blue, my right knee just blew up literally within the space of a day. It went from fine to very swollen and stiff. And the next day, it looked like there was a balloon inside it. I almost couldn't see my kneecap anymore. It was just this round thing. It's kind of freaky. So that happened just for no reason that I could figure out so I came, you know, I came down the stairs and I said, Mom, Dad, you know, my knees stiff and swollen. What do I do? I was very lucky because my dad has worked in the NHS all of all of his life. So the NHS is central health service in the UK, the National Health Service and my dad had been had worked in there mainly as an ophthalmologist who's a basically an eye doctor. He did cataract through his career. So he knew Straight away saying that I needed to see a rheumatologist which, you know, most people don't get that the normal route would be you go and see your GP and then hopefully your GP knows a bit about rheumatology and knows to refer you there, but I was lucky that I could basically go straight to the rheumatologist because my dad knew straight away. Oh yeah, this is some sort of rheumatic reaction. So I got to see a rheumatologist pretty quickly. He drained my knee, took all the fluid out and immediately started investigating it. So I had the blood test. You initially called it a reactive arthritis, which I think is just like an umbrella term for arthritis that is caused by some sort of reaction, your immune system reacting to something. So from there, the blood test came back as I think it was called zero negative, which meant which narrowed that diagnosis pretty quickly. You know, within a few months, I was diagnosed with ankylosing spondylitis. This is what it is. So you know, I'm very well aware that's probably not the typical story. Most people take a lot longer to get diagnosed, but I was pretty quick initially, it actually didn't really it wasn't a big problem. The first few years that the stiffness and swelling went away. I started on a drug called sulfasalazine and I can't remember but I might have started non-steroidal anti-inflammatories as well, which took the swelling away. And not a lot happened for a couple of years. Really, it just sort of I just sort of forgot about it. It was only until I started to go to university that it started to spread to my lower back. So I started getting pain in my lower back a lot and just very, very gradually over the next couple of years. That just seemed to get worse, worse and worse, just very, very gradually. and stuff. I noticed it started affecting my hips, and sometimes my shoulders, or my whole spine, and just getting more and more pain and stiffness, and the fact that it, it was so gradual, the change, the increase in pain and fatigue, I almost didn't really notice it happening. I mean, obviously, I noticed that I was in pain, but I didn't know as how much help I really needed. I didn't really notice how much trouble I was I was in until I kind of got to a breaking point when I was at university because I was I was trying to do my studies, student Psychology at the time, and it was getting really hard to go to lectures to do do my work. Just get up in the morning start to get get really hard. What I was doing at the time. I was just trying to plow on regardless. Just just basically trying to force my way through it. Just try and pretend that it wasn't happening. You know, just try and do absolutely everything that I was doing, and just sort of fighting through it. And that worked that that, you know, I could do that for a couple of years. I was, you know, young. I wanted to get on with my life and my career. But after, after a couple of years of doing that, it just, it just slowly ground me down a little bit. And, yeah, it got to a point where I suddenly realized I didn't know what to do. It was it was getting so hard, like everything was getting so hard. Yeah, I guess the sort of stress and anxiety and depression sort of snuck up on me. Until one day I just, I realized I really needed some help. So I went to see a counselor at the university and I saw I just burst into tears after about just a few minutes of talking to the counselor and you know, I finally had somebody who wasn't my family or close friends somebody that I could just be completely honest with and actually just explain what was happening I had never really explained or described to anybody from the from the beginning what what was happening, and when I was going through doing that, I just I just sort of broke down into tears and that's when I realized that I was I was really suffering you know, I needed I needed I needed some help. So, yeah, I I gone through some tough times at university, and that that's when I started getting more help from my rheumatologist which we tried for quite a while changing to different non steroidal anti inflammatories or tried diclofenac one called  Naproxen, one called Taracoxip(sp) started on painkillers, tried all sorts of different things. And it didn't really help. It wasn't well it did. It did help but not enough. I was in a lot of pain. And one day at one day where my rheumatologist I just said, I don't know what to do, and I'm really struggling and kind of hack. Yeah, I just I just don't know what to do what what, what else can we do? And because oh, by that time I learned to sort of be more honest about what was going on inside me. Instead of just bottling it up and just trying to soldier on I was, I was much more willing to say, I'm really struggling here. I'm in a lot of pain. And so that's when he said, okay, James, I didn't realize you were struggling so much. Let's start you on this thing called Humira. So people who have as probably heard of biologics, and now you've obviously heard a biologic He cause he hadn't realized how much I was struggling because I kind of had an ear when I was younger even just saying out loud I'm in a lot of pain was quite hard to do because almost saying that makes it more real.  You almost don't want to say it because by saying it you kind of admitting that your life is not great right nowJayson:Saying it means you give into it, saying it to me. I completely understand what you're saying because as a young guy, it felt like anytime I said it to any level about my pain, that it maybe was defeating me that I was less.James: Yeah.Jayson:I wasn't where I needed to be. I wasn't living up to what maybe my own expectations or others were. And so I completely understand that. It's, it's, and I don't know if women experienced the same because I just haven't had that conversation. But when I talk to other guys that have it, which is not that many. This is only second or third conversation I've had with people with it directly, it's kind of that you're showing that weakness you don't want to show. It's something that when I was young, there was nothing was gonna stop me. I was going to climb every mountain that was thrown in front of me. Well, this was a mountain. I couldn't climb, not by myself. And that was probably the hard part.James:Yeah, yeah. There's something about I think being especially I don't know, obviously, I don't know how compare but maybe being a young man. I don't know if it's harder than being a young woman. But yeah, I find it really tough like you to just to, just to realize and admit that you need help, that you're sad, you know, that you're, maybe you don't know how to handle it. You don't know quite what to do, because these are all the thoughts that I was having, but I was kind of bottling it all up, which makes it even worse, which makes it worse for sure. I mean, I think the I think is well known now that stress affects the immune system and affects your nervous system. You know, in fact, Your body this is this this really strong link between what happens in the mind and what happens in the body. And for sure if you're more stressed you are the more I think it I think it definitely makes it worse. Yeah. So getting on to biologics was was a huge thing for me. So the one I started on was called Humira and I'm so glad that I am so grateful that I sort of opened up and, and explained what was going through because I took the first injection of Humira and I was sort of told that maybe if, if it you know, it works for some people, that doesn't work for other people. Let's give it six to eight weeks, and we'll come on we'll have you back in and we'll see if you've improved. So I had my first injection and I wasn't, so I was, I was expecting this long, slow, possibly possible improvement, but what happened was the next day I woke up and I straightaway I felt something's different. I wasn't quite sure what it was. But after a few moments, I realized that I could move my neck, just the movement, my neck felt different. And I realized, all right, I can actually move my neck in look further than I had moved it than I could comfortably move it before. And it just took off. It was, it was it was just like a miracle. It was like this miracle cure out of nowhere, that completely took away my symptoms. I mean, for you know, I would occasionally notice it every maybe once a week or a couple of times a week. But for the most part, I could just I got my life back. I could do what I what I did before. It was Yeah, it was amazing. I even I did a half marathon which I would never would have thought of To to raise money for the National Ankylosing Spondylitis Society. So our half marathon called the Great North Run. And that happens in Newcastle where I live, so that that was just just amazing. Jayson:So tell me, what year was that?James:So that would have been 2010 by the time I got on to humera that was 2010. Okay, so you're a young guy, you started a biologic, you're having great success with it right off the bat, which is not unheard of. I know doctors like to tell you give it six, eight weeks, give it up to six months, and you might notice some difference, but I noticed not just Humira but biologics in general, if your body is going to accept them, it seems to be fairly quickly that they like that reduction, inflammation. Jayson:And so now you're young guy, you're on this biologic, you're feeling well, are you still on Humira?James:I'm not No, I'm actually on something called Cimzia or Certolizumab because what happened was after three years of being on Humira I started noticing my sort of background pains which were really Humira made it really minimal, almost gone but after three years I started noticing is it can is it gotten? Is it getting a bit worse and over over the space of a few months, all my symptoms came back I just got all the pains that are coming back the fatigue, and I knew I knew within about a month Oh, here we go. I I remember this I remember what this feels like. This is this is Ankylosing Spondylitis, coming back. So it's different for everybody but with biologics, and with anything to do with the immune system. The thing is, the immune system is so amazingly complicated. It scientists don't understand a lot about how it works. Still, and That's why these drugs affect some people. And it doesn't affect other people and people's. Some people have side effects some people don't. And it turns out some people become older. I don't think it's entirely known why but for some people, the effects start to wear off after a few years. And I just happen to be one of these people where for whatever reason, and it's not quite known wine, whether it's my immune system that has become almost immune to the, to the drug, or what I think there's a theory that my immune system actually starts attacking the Humira and destroying it before it can take effect, which is quite annoying, but for whatever reason, it all came back. And that was probably harder than that was harder to take than the original onset, because I knew what was coming. And I'd had these three years where My symptoms had gone down so dramatically. And I managed to
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_khttps://www.healthline.com/health/beyond-back-pain-with-as/5-things#1
Hello, and welcome to The Ankylosing Spondylitis Podcast. I can't believe this is the final episode of 2019. So as I wrap up 2019 and look towards 2020, it's just been a fantastic run this year. This is the 30th episode of the show and I wanted to do something a little bit different for this episode. As we look at having Ankylosing Spondylitis and interact on the message boards on Facebook and on the various websites like ankylosingspondylitis.net, I think about the things that I've experienced through the years dealing with Ankylosing Spondylitis, whether it be relationships, the highs and lows of marriages, dealing with family members, work, everything comes into play and I’d really like to take 2020 to be the kind of year of support for Ankylosing Spondylitis. What can I do? What can we all do together to not only better support us, but also find ways to get support from the people around us? So as we roll out of 2019, I came across an article on healthline.com (I'll have the link in the show notes). It's called Finding Support and Talking About Your Ankylosing Spondylitis. That can be very challenging for many of us. As I've said many times, I was diagnosed when I was 14. I didn't meet another person with Ankylosing Spondylitis till I was 26, maybe 27. So it was about 13 years till I meet another person with it, or at least that I was aware of. There was no internet, there was no anything to look up and find information. You went to your rheumatologist twice a year, and what information he gave you is all you really knew about it. There was no way outside of that, that I was aware of at those times to find additional information. So what's available to everybody now is fantastic, but you know, just In the US, spondylitis affects at least 2.7 million people. And I know from the show having been downloaded on 59 different countries, there are lots of people around the world that are dealing with Ankylosing Spondylitis or have loved ones that have Ankylosing Spondylitis. We know that that number is exponentially higher and it doesn't include the people that have it but have not been diagnosed are fighting to get diagnosed. So that number will do nothing but continue to rise. Why? Don't know, hopefully medical research can figure that out as go forward and future generations will either have less amounts of people with it or the best case no people with it. So how do you get support? You know, it's challenging enough as we all know to pronounce Ankylosing Spondylitis, let alone to explain it to anybody around us, our family members or occasional acquaintances or our job, you know, may seem easier just say to somebody I have arthritis and then just try move on from there. But that really minimizes the condition that you're going through in their mind when you say they being people you tell, if you just say you have arthritis and are very nonchalant about it, they're not going to understand the pain and more importantly, the fatigue that you deal with Ankylosing Spondylitis. So Healthline came up with a series of seven things to help as we go forward with getting support. Number one, ditch the guilt. It's not unusual for someone with a s to feel that they've let their family or friends down. I can certainly attest to that. Well, it might be normal times to feel that way. You don't have to. I can't tell you the number of times I felt guilty for not being able to do certain things with a spouse or girlfriend or feeling guilty about not being able to keep up with friends as they were go go go or, more importantly, to do the things I wanted to do with my kids as a father That I just couldn't do now, on the flip side, what I did learn is that kids are extremely adaptable. And mine never looked at it as that you couldn't do these things at least, they never said that outright to me. But what they did do is become extremely adaptable to helping me at the times I had them for the summers and stuff as a divorced parent, they became very good at knowing what I couldn't, couldn't do and, and we just, we made it work. So it was always amazing to me how adaptable your kids are, if you give them the opportunity to be adaptable, to let you know, let them in on what you're dealing with. So just remember, if you allow guilt to fester, it can lead to depression. And that's one thing that we don't want to deal with on top of Ankylosing Spondylitis as depression. Number two, educate, educate, educate, you know, it can't be stressed enough. Education is the key to making sure that others understand Ankylosing Spondylitis. Educate your spouse, have them go to doctors appointments with you have them come in when you go to see the doctor so they understand what the doctor is telling you, educate your co workers, educate your boss, you can be very proactive about it, I made sure that my boss knew and he was more accommodating when I worked because both of his young children have dealt with juvenile rheumatoid arthritis. So he was fairly familiar with what I might be dealing with, and was therefore more accommodating to let me do certain things, whether it be maybe work from home an extra day, or work a few hours this day, but leave early for a doctor appointment. We had a really good working relationship that way and for that, I'm always going to be a very appreciative of what he did. But give your co workers give your boss a chance to understand what you're doing and dealing with, especially in certain jobs where I see people that have jobs where there's their life and other people's lives can be affected by the quality of their work. So you have to be in tip top shape maybe for whatever your job is. So it's best that you left your job though there may be accommodations, but it just continues to educate that having Ankylosing Spondylitis doesn't mean we're any less of a person. It's an invisible illness. So a lot of people aren't going to believe what we're dealing with. So that's where you have to educate, educate, educate. Remember that, to combat this, educate the people in your life about as and how it impacts your day to day. You know, you can print some online educational materials for families and friends. Give them this podcast, let them listen to somebody besides you talk about their dealings with Ankylosing Spondylitis, which may open them up to them listening to you when you talk about this condition that nobody can see.Number three, join a support group. That's been the big one for me. And that was my takeaway for 2019 is I wanted to join a support group here in Michigan where I live The support group was about three hours away to the early part of the year I skipped out said no, I don't want to drive. I finally took time, drove over, and met with everybody at a meeting and it was great to connect with everybody. So go to a website like Spondylitis Association of America and see if they have a local support group to your area (this is for the United States). For people in England, Australia, Canada, many of the other countries, you guys also have Spondylitis Associations. I'll have links to them in the show notes, where you can find communities local to where you're at and if there's not a community support group near where you're at, consider starting one. You’re probably not the only person in that area with Ankylosing Spondylitis. So maybe you contact the spondylitis Association of America and put together your own support group for that area could start off small with 1,2,3 people could grow exponentially over time, but the more interactions you get, the better, plus it's also therapeutic. That you're sitting there talking with other people that have Ankylosing Spondylitis. When I went, I saw people that had some of the similar conditions and experiences I had up to folks that just had a sore back or had been dealing with, you know, some mild fusing for the years. So there's the whole gamut. But we all share that same item. And it was it was really kind of fun. Number four, communicate your needs, you know, your spouse, your kids your job, they can't work on what they don't know, if you don't let them know what you're dealing with, and try to hold it all in. You're not going to have us, for example, a spouse I didn't let my first spouse in. She knew I was hurting, but every time she tried to help I pushed her away. It wasn't fair to her, wasn't fair to our marriage, and wasn't fair to me and caused many, many issues. And you know, I don't know if that was part of the divorce, I'm sure it was but anyway, communicate what you need. Many people want to help, but they might not know how I know that when I help somebody I see maybe as simple as holding a door for somebody, they see me walking up with a cane and I open the door and hold it for them. I sometimes get people amazed that I'm doing that and it feels good to help people and people will want to help you and get that same, feel good rush out of it. So if somebody wants to help you put groceries in your car, let them if you're having a bad day, whatever simple or as complex as it might be, communicate your needs. Let people know when you might need some help people when they might need some help. And just it allows you to be a better person. Number five, stay positive but don't hide your pain. This is a hard one. This is a real hard one for me, is I tried very much to mask what was going on with me until my final few years at work. When I broke down and had a scooter I had been on crutches for a couple years. But even when I was on crutches, we had a building it was good, I think half mile long. And I would go back and forth on that building on crutches as best I could, so that nobody would ever think that I couldn't do something I tried to hide or minimize my condition as much as possible. And that doesn't mean you're out looking for special favors or anything. You're just looking for accommodations to make your job easier to make your life easier to make sure that you can be the best person you can be. But stay positive, that positive mindset is going to help you be more open. In my opinion, there's some research out that talks about chronic illnesses and I think it uses Parkinson's, which isn't exactly what we have, but it's still a chronic condition and the ability to stay positive can help in that so do as best you can. It helps to keep you out of depressive states. If you're finding that you're having a hard time being positive. If you're finding that you're having a hard time dealing with this and feeling that you're slipping into a depressive mood. Please see a doctor  or see a therapist It might be something that's as simple as talking to somebody besides a spouse or a co worker and can help you out doing talk therapy, it might be something where you actually need some medication, shorter, long term to help out with a condition. There's nothing wrong with reaching out to folks to say that you need help. Number six, involve others in your treatment. You know, many times, you'll know that if you ever seen a loved one that's dealing with a condition and there's nothing you can do it feel helpless. You want to do what you can do to help them even though you don't know how well that's how others feel when they see you. So if you have a spouse, a mother, a father, any brother, sister, and they want to go to a doctor's appointment with you to better understand what Ankylosing Spondylitis says, let them go. Bring them into the fold, so to speak, let them know what you're dealing with. Let them know the medications you take the pluses and the minuses that can happen, the things that they might see from the middle You taking the medications, good and bad that way, your loved one your family member, they're all better able to help you cope with this condition called Ankylosing Spondylitis. So, you know, in addition to going to doctor's appointments, maybe some of your family wants to come over and take a class with you. Maybe some want to come over and help you on occasion, like cook a week's worth of meals to make it simpler on yourself and your family. Have your family help with cooking meals for a week. There are all sorts of things that you can do to get others involved that helps to your benefit. Number seven, get support at work. This is one that took me a while to take up. When you're at your work, discuss with your supervisor, direct supervisor, whoever HR, what type of maybe accommodations you might need, or that might be able to make your job easier for you. Maybe they can put you on a new job that makes So that you can work longer. That was what ultimately happened to me, my job moved me to a position that allowed me to probably work another eight, nine years longer than I thought I would before I finally took a medical retirement of 47. I didn't want to take one. I just couldn't do it anymore. You know, it's an honest conversation you have to have, it's a hard conversation. And sometimes if you're used to holding everything in, you have to be brutally honest and peel back and say, Look, I'm not feeling well, you can't see this illness, but here's what it's doing. Here's what I'm experiencing. Here's the fatigue that it causes. You know, if I forget something or whatever it might be, it's not that I'm being sloppy. I just might be extra tired. Let them know, get everyone involved. I think you might find that you find better working relationships once people are able to understand why you're acting certain ways that you are. Let everybody know that it impacts your life in various ways. I assure them of your ability to do your job. And be like said be very clear about accommodations you may need if you want and it's a small enough company or it's a family run company. You may even consider contacting somebody like a spondylitis association and getting brochures that you can put in a break room about Ankylosing Spondylitis or even talking to the folks on a break period about what it is that you deal with, and open it up and say, Hey, you might have had questions when you see me do this or this. Now's the time to ask them, I'm here to answer questions. And I'd love to talk about Ankylosing Spondylitis. Maybe you don't want to do that. It's entirely up to you, but you know, get support at work that'll help you to stay working longer. So with that all said, we wrap up 2019 and I look forward to going into 2020. Remember, you don't have to go it alone. Even if you don't have close family members, you're not alone on this as journey. Go to any of the Facebook Ankylosing Spondylitis groups. Reach out to them, go to ankylosingspondylitis.net and there's a community section there. All of those websites can provide you with some measure of support as you go through this Ankylosing Spondylitis journey. You know, everyone has to deal with it his or her own way. Everyone has his or her own cross to bear as you deal with the Ankylosing Spondylitis pain, but you don't have to deal with it alone. There are many people out there that are willing to help and or at least listen and allow you to vent. So with that said, I hope everybody has a wonderful New Year and a great start to 2020 and I look forward to interacting and growing with you all in the New Year. Thanks for a great 2019, Byehttps://www.healthline.com/health/ankylosing-spondylitis/living-better/finding-support#1
Welcome to this episode of The Ankylosing Spondylitis Podcast. I'm very honored today to have Matt Burgess on. Matt is the founder and president of Freedom Fidos, which is a service dog training organization out of Columbus, Georgia. Matt's focus with these dogs is to provide them to disabled military and first responders a thing that's near and dear to his heart. Matt's not only served in the military, being in the Georgia National Guard, and serving overseas in Operation Enduring Freedom and Iraqi Freedom, as well as being wounded serving overseas. So with that, Matt, how are you doing?Matt Burgess:I'm great today. Thanks so much for having me.Jayson:Oh, it's my pleasure. First and foremost, thank you for your service from those of us that like myself, I grew up all I want to do is join the military with the Ankylosing Spondylitis that was not to be in my cards. So I ended up having to go a different route. So for me anytime I can get the message out to help anybody, whether you're disabled service members, or in this case, a combination of the two. I love to do it and freedom fighters and such an amazing story. I'd really like if you could tell the listeners a little bit about your military background and what brought you into thinking about service dogs.Matt Burgess:Yes, sir. Well, first of all Jayson, thanks even though you didn't military thank you for your service now and what you're doing for humanity, which is really means a great deal to me and I'm honored. The first time in the military, I was in the infantry from 1993 to 97 and deployed to Bosnia and Macedonia and went through three blast explosions, which created traumatic, brain injury but they didn't really have that term at the time or really, no, was and I knew I was different, but I wanted to stay in the military. I got the military with honorable discharge in 1997. did a couple different jobs. Brandon the Tree Service Then after 911, I wanted to go back in, can you serve again and also I hope to get into federal law enforcement. So I felt like military police would help my resume. So I joined the National Guard for what they call a try one, which was to be what year graduated in the top 10% of my military police school and was doing pretty well kind of tracking with the military. I deployed to Iraq in 2003, with the Georgia National Guard, and a month later, I was having sharp pains and falling down in extreme cases of vomiting and despite my protagonist, I was headed back to the United States. And I went through two years of medical treatment and trying to determine what the case was and was sent the Walter Reed anthrax vaccination center where they determined When I was the most classic case of symptoms as a result of the anthrax, and so in 2006 I was temporarily retired for the military in 2007, permanently retired. Jayson:They even thought you had Ankylosing Spondylitis what like what I have because they just couldn't put together what was going on with you. Matt Burgess:Yes, sir. Amongst several past that was one of the primary considerations that a wonderful doctor he really went above and beyond and he really considered that that might be the diagnosis.Jayson:Interesting and then it turns out to be this shot you got an essence it was you know, a vaccination to try and keep you safe turns out to be what caused you all your problems?Matt Burgess:Yes, sir. The reaction to it ended up creating 18 previously non-existent medical conditions, five of which, you know, the doctors label the top five killers. Jayson:So, wow. So you come back. You've been given all this News. What led you to say I want to start an organization to train service dogs? Matt Burgess:I was medically retired; I went to a couple of technical schools and then I went to, in Gainesville, Georgia, enrolled in a associate's degree at Gainesville State and got my associates degree and my grades were good enough that I was able to transfer to University of Georgia and then in my final year at the University of Georgia, my pet of 15 years, a dog had passed away. I went to Athens, Georgia animal shelter and the first kennel I walked into there was this little brown and black bundle of fur and it started, he walked up and started to chew on my shoes, just looking at me like ‘Please take me, Please take me.’ So I put in the application and the amazing thing, now I know why, was six people ahead of me didn't take that dog and I got him. So a year later, I was working on building a privacy fence and I named the dog. I thought he was going to be security dog because he was a Rottweiler Shepherd mix, I named him Brinks. A year later, I working on a privacy fence and the wind blew and hit me. Because I was already susceptible to head injury, it knocked me unconscious, and Brinks jumped an existing five foot fence and went and scratched on the neighbor's door, going back over the fence. I woke up to Brinks dropping my cell phone on my chest and licking my face in that very transformative pivotal moment, I knew my life's purpose, and I knew that we would start a nonprofit, rescue dogs from shelters, train them to be service dogs and provide them at no cost to disabled veterans in order to give the same quality of life back to the veterans that Brinks was giving me. Jayson:Had Brinks been trained to do any of that?Matt Burgess:No, he hadn't and when he did, it was just instinct. He's mostly untrained, so I started working with him.  He was of course very puppy and he would run through my house with chewed up shoes and when I told my professor that Brink’s ate my paper, my term paper, it really wasn't a lie. It was the truth, understandable, but still a little stressful. So I invested in a lot of dog training videos and it really started learning how to train dogs. But what Brinks did when he saved my life for the first time amazing to me, powerful, often intangible thing about the canine were they know so much and they know us often better than ourselves, and just because it can become a powerful collaboration.Jayson:You have this episode happen, you've got Brinks with no idea that he will do this. Brinks is not thought of as a service dog he’s really just to be a pet, you know, a ball of fur around your house. Tell me about the first dog that you ever went and rescued to train. How did that come about? Matt Burgess:Shortly after that I went to the Shepherd Care Center where they have a six-month program where they work with veterans with traumatic brain injury and Post Traumatic Stress Disorder. While I was there, a veteran told me about who had a service dog told me about an organization in South Carolina who would train existing pets to be service dog. So I searched down the organization, went to the organization and invested myself, became a lead trainer, and I trained to be a service dog and then in 2014, started on my own and the incredible powerful story of the first dog we rescued named Bronson. He was in White County, Georgia; he'd been severely abused and pretty horrifying situation. We placed him with a child with special needs at the time and it's been an incredible journey that it's pretty hard not to get emotional about it. Jayson:To date how many dogs has Freedom Fido’s rescued and put to work? Matt Burgess:We have created 43 service dog teams and will be placing eight more by the end of this year, by the end of December. We have a waiting list of 200 plus so it's a pretty big need.Jayson:Yes and now with that said, You've got some relationships with the various kennels around, the pounds, all the places that hold basically unwanted dogs. You must have a lot of time and effort just in vetting dogs?Matt Burgess:Yes sir. So when we go to the kennels, we of course wish we could take them all and I think half or a good part of the reason why I started Freedom Fido’s is to walk into the shelters and be able to say yes and it's a very emotional experience and when we go to the kennels, tennis ball training is one of my favorite ways to train the service dog. So I walk in with a tennis ball, bouncing the tennis ball and at first all the dogs pay attention, but the dog that is still paying attention to the tennis ball 20 to 30 minutes later is usually your very driven, task oriented dog. That dog is probably the one dog we can afford to do a personality test and we also take Brinks with us because as much as my partner and I try to speak dog, we can't. So Brinks can tell us if there's anything with a dog that we might not see and it is very emotional draining three to four hour experience. Again, we wish we could take them all but then at the end it's just really amazing. When you walk out with this don't look at maybe the eyes, they're given up for any reason and they don't. I understand that and it's almost like they know that you saved their life. And then it just begins that powerful journey with the culmination or their place with a veteran in the collaboration and the symbiotic relationship and the healing is just beyond words.Jayson:Now these dogs, when you pick them, obviously each person that's going to receive a dog is going to have different needs. But that doesn't mean that all the dogs have to be large breeds for a mobility type service. They could be small breeds for emotional issues, anything of that nature, could they not?Matt Burgess:Absolutely! It's really amazing when you get these dogs from the shelters and give them a chance. We actually have two small Yorkies that retrieve items off the ground and the cool thing with them is they're able to jump up in a wheelchair for those two veterans. So yes, absolutely. There's pretty much, there's really no dog that is excluded and we work with every disability except for the seeing eye dog.Jayson:That being said, do you train the dogs to the ADA standards? So the dogs are a service dog and not just an emotional support dog?Matt Burgess:Yes, sir, we do. We're really directing and really pay attention to the ADA which paraphrase says there's a dog that can be passed trying to alleviate a disability then the dog has the right to be in public. So our dogs are tasked trained to alleviate a physical disability for the individual. Jayson:Oh fantastic. So that way the dogs can't be discriminated against and forced to be left out if that person needs the assistance.Matt Burgess:Absolutely it is. For example, when I walk into a restaurant, Brinks carries my wallet or carries my keys. He brings the wallet up on the table, he pays at grocery stores, he helps me do my laundry, he retrieves, he can take items at a grocery store off the shelf and paws up and put them in the grocery cart, also wakes me up when I stop breathing by licking my face. He’s saved my life numerous times. So he's my hero and so we like to we sort of use him as the gold standard that we want to replicate or duplicate what he gives to me and give that to other people.Jayson:One of the things that's really neat about Freedom Fidos is you've caught the attention of a lot of people, including an author named Ramona Rice and she wrote a book that includes you guys called Walk In My Paws An Anthology: Working Service Dogs. It was just published about two months ago and if I understand right from reading the information on it, it talks about Oh, roughly three dozen dog service dogs and how they help the people that have them.Matt Burgess:Yeah. So that's really been a wonderful highlight of 2019. We are very grateful that Erik Weihenmayer, one of my good friends I met on a mountain climbing expedition that had a piece that aired on NBC. Ramona saw that and reached out to us and being the incredible, in my mind, modern day Mother Teresa that she is, she had written first one book and donated the royalties about Cushing's disease.  She was writing another book, as you mentioned, Jayson it is 33 stories of service dog handlers and she wanted to donate the royalties to a nonprofit with service dogs. So in addition to that, the relationship is growing. She also ended up including Freedom Fidos in the book; it's been an incredible journey. She's just one of the most high caliber, giving, big-hearted people I know. And so now she's very instrumental in Freedom Fidos and we're just ecstatic about the book. My co-partner and one of our board members, Christine and her service dog, Oakley ended up being on the front cover and it really shows their connection. So we're really excited about the book, we really feel like it's a book that the world's been waiting for. It's a tearjerker, is compelling, it's gripping in a must read way and so we're really thankful to Ramona for what she's done.Jayson:Very neat and I'm looking forward to getting a copy because anybody that is listening, when you buy a copy the proceeds come back to help Freedom Fidos which is really fantastic. Matt Burgess:Yes, sir. It really is! We're really excited about it. We are a 501(C)(3) non-profit, so that's one of the challenges, is raising the funds so we can keep on supporting our populations because we're all in and hungry to do it. So that the 200 plus, all those voices are on my mind daily and they will lie on my mind and so there's certainly an urgency to play see dogs and the funds from this book are absolutely helpful. So we're really grateful to Ramona.Jayson:So anybody that’s listening, if you're a veteran or first responder, or you know someone that fits this, and have issues with PTSD or mobility or anything, please reach out to Matt and his organization or freedomfidos.org and talk with them, there may be some things that he can discuss with you to help and if possibly may be that you end up on the list to receive a dog that may be something that's of help to you. If you have other specialties or you want to become an advisor because you have business acumen, you know how to write grants, you've had business experience, whatever that specialty is, reach out to Matt. Matt would love to talk with you and there's also ways to help go around to different organizations if you're in the Georgia area, and help with the dogs and the fundraising and stuff. So there's a lot of things that are very important that help keep Freedom Fidos running and I would encourage anybody to reach out and talk with Matt and see if you can't be of assistance. So Matt, maybe somebody wants to try and train their own dog. There’s no requirement that a dog has to go through a specific organization for training. If you could give that person two or three bits of information when they go to talk about picking out a dog at a pound one was the tennis ball you mentioned, what other things might they use to try and vet to find the right dog.Matt Burgess:I like to really recommend even if they don't end up going through a service dog organization, I would really recommend they find someone experienced with dogs to go to the kennels with them to make sure they get the dog. I don't recommend it because it's a very challenging experience, which takes a lot of time and experience and I've actually had, in my first days, I've actually had dogs where I didn't pick the correct myself and sometimes you don't know and in fact, you may not even know until the last week that the dog may not make it. But I highly recommend that they find someone with service dog experience to help them pick out the right dog. It’s typically not the dog that most individuals would think. Jayson:Interesting. So yes, look at your local services, see about dog training and see what folks offer any type of assistance with going to vet a dog. It might not be a pound dog, it might be a dog where you have a certain breeder in mind and that professional dog trainer can tell you yes, you want to look at puppies here. No, you don't want to look at puppies here. Here's the puppy you want to consider, because as Matt said, you don't want to get to three years into training of the dog and maybe through no fault of the dog. he or she is just not cut out for this and now you have a dog that can't do what you were hoping it to do. What do you do? It brings up a whole other series of issues to deal with.Matt Burgess:Yeah, that’s absolutely great advice and for example, when we go to the kennels, there's so many things we have to test for and a lot of it has come through experience. For example, food aggression, or the inability to be compatible with other dogs. There are so many things that have to be looked for. And then sometimes for one of our populations, children with special needs, we actually use a very ethical breeder, we use the Golden Doodles, a very ethical breeder, and have had great results for our population of veterans that have allergies, so they need the golden Doodle, hypoallergenic dogs and so we have a very ethical breeder that we can recommend to anybody and I'd be glad to do so. Jayson:Great. So if that's somebody’s issue (allergies) they're dealing with, then you've got some way to help them with that as well.Matt Burgess:Yes, absolutely. We actually had a Golden Doodles in training for children, it was special. We also have them out there with the veterans as they have the allegation we are this breeder out there and just incredible journey and what they're doing. Jayson:Awesome. Now, is there any particular task that's harder to train a dog to do?Matt Burgess:Yes, definitely. That's the fine balance we try to find because they have to be the dog. The canines have to be in public and they are service dogs. Well, we're not in any way trying to break their spirit. In fact, we want to enhance their spirit because enhancing their spirit then lets them be motivated to do what they do. And you see their pride and their desire to please and the hardest thing is important because that is when they bark, because that is how they communicate. It's actually Okay. We can't allow that in public. So that's one of the hardest things to correct. To let them understand when it still is okay to bark. For example, if someone comes up to a house okay, but if they see in public, we try to correct that.Jayson:Well, I have trained my own dogs; none...
Hello and welcome to this episode of The Ankylosing Spondylitis podcast. My name is Jayson Sacco and I thought we would cover today some new best practices for rheumatologists in working with Ankylosing Spondylitis patients. Now these are updates that came about from the annual rheumatologist meeting that was held earlier this year. These are the guidelines from the American College of Rheumatology, the Spondylitis Association of America and the Spondyloarthritis Research and Treatment Network and they've updated their guidelines on the management of Ankylosing Spondylitis and Nonradiographic Axial Spondyloarthritis. First I want to touch on the question of the week. This one was kind of interesting. I saw a young lady post something on Living with Ankylosing Spondylitis on Facebook that she was having rib pain and was mentioning that to her rheumatologist, and they said that they thought it was unrelated to AS and there really wasn't anything that they could do for that rib pain. I started Looking through it I personally know rib pain can be an issue where your ribs attached to your spine, and also where the ribs come together at the front of your chest. Those areas are prone to inflammation and then again are prone to fusing. Everybody's going to get a different some people may have a lot of pressure and pain in the ribs. Others may have very little I've been lucky to have very little but I have had it and I know it's painful in the show notes. I'm going to have a link this was from posting I found from the UK Ankylosing Spondylitis Association, and they talk about good as your ribs can become a flame, the ribs can become a flame, you know, like I said, where they attach with the spine, and that can lead to stiffness and eventually fusion. If you have a doctor that's telling, you, ribs aren't generally affected or anything of that nature. You know, just a quick Google of rib pain and Ankylosing Spondylitis will bring you a number of articles. So remember that they can be affected One of the things you can do as a patient is make sure you're doing a lot of deep breathing. You're doing exercises to keep your ribs flexible, and even when it hurts. Keep doing that deep breathing. If you're doing swimming, it helps lightweight exercises, nothing heavy. You're not trying to build huge muscles. You're just trying to keep all that stuff around your rib cage fluid. The more you exercise your ribs, like anything else that deals with Ankylosing Spondylitis, the better off you'll be. So again, in the show notes, I'll have a link to this and you can read it. It's real short couple paragraphs long. With that, let's go on to some of the new guidelines for treating Ankylosing Spondylitis. The last time these were updated, actually drafted was 2015. In that four-year time period, quite a bit has changed, you know, a lot more information’s become available about the diagnosis and then just treatments evolved. There's more biologics that are available now and something to point out in here that I was kind of wondering about seems like they're actually starting to look at as well, these guidelines will be in the show notes (at end of this), I'll have links to these articles. These guidelines help to ensure that rheumatologists, healthcare professionals have current knowledge across the board about what are best practices for treating somebody with AS. There was 86 recommendations, we're not going to go over all 86 of them. There are really a few that I think are the real important, but again, the article I have links to those so you can go out and research them. They were again disseminated to rheumatologists but not only were disseminated by but we're coming together by the American College of Rheumatology, Spondylitis Association of America and like I said before the Spondyloarthritis Research and Treatment Network, really what they're trying to do is if they can get everybody kind of streamlined in the treatment, the whole goal is to get a faster treatment to people and not these stories that you might read online where a person you know, languishes for years trying to get some type of diagnosis. They're trying to come up with faster ways to track people, so the we get the treatment much earlier in the stages of AS and not later on in life. So as I said this the first time and updates have been done in four years and they address medication and non medication treatments, they look at as related comorbidities, the disease activity assessment, imaging tests and screening and then managing biologics and biosimilars, the main motivation for the changes, you know, as mentioned was the new treatment options that are available. There were also some clinical questions about the medication treatments as well as the use of imaging. The results of the literature review, were then debated by a voting panel that they have that works with looking at all this so everybody gets some input is really what it amounts to. So that ensures that these changes are based on good data and are worthwhile you know for all of us patients. So as I said there was 86 recommendations, patients can talk with their doctors about these new guidelines, but some of the recommendations I'm just going to read through these and I apologize, I'm going to not use the scientific name for Some of these drugs, I'm going to use the street names because honestly, I can't pronounce the scientific names, it'll end up sounding like a butchering with me trying to do that. Some of the recommendations were strong recommendation to treat adults with active AS who are taking non-steroidal anti-inflammatory drugs, may also start a Tumor Necrosis Factor inhibitor, TNFi.  So that was one of the first things that they said is that they want to start off the treatments with TNF inhibitors. We see that fairly common because most people say, “My doctor want to start me off on Humira or emerald.” Second strong recommendation to continue treatment with the originator biologic for switching to a biosimilar drug for adults with stable as So basically, the way I read that is if you're AS is under control, and you're on Enbrel, let's say then the idea is to keep that treatment going and maybe some doctors were saying no switch to this or we'll switch to that or we'll move this will do that. I don't know, but this is trying to say why don't you just stay on the thing that's keeping it stable.Third conditional recommendation to treat with a TNF rather than with a drug like Cosentyx, or some of the other ones that come along. They want to look like start everybody off with a TNF inhibitor first and then after that it's conditional recommendation to treat with say Cosentyx or Taltz if the TNF inhibitor doesn't work. Another conditional recommendation they made was to treat the patient with either Cosentyx or another medication called Taltz using those two over using Xeljanz. So basically, we're saying okay, if the TNF you know, Enbrel or Humira doesn't work then to try something like Taltz or Cosentyx verse jumping to Xeljanz. So it looks like Xeljanz has maybe been moved farther down the list of favorable treatments. Another conditional recommendation was against repeat spine radiographs. A standard approach for adults with active or stable non-radiographic axial spondyloarthritis who are receiving treatment. So it looks like they're saying, okay, we're just not going to do a whole lot of X rays, any type of imaging, I should say if everything seems to be going along with normal as treatment, another one is traditionally in favor of the use of sulfasalazine and limited clinical circumstances and then finally, MRI is not recommended to search for inflammation and patients with axial spawn to arthritis. So really, what does this mean for all of us? For some people, you know, it's going to be nothing like for me, for others, it might mean looking at other medications or fewer imaging tests, depending on what your doctor is recommending. Again, this is not medical advice, just talking about some of the items that are coming out. So really, it's going to still come down to your relationship with your rheumatologist and what he or she recommends that you do as you work for because these guys are guidelines are not blanket statements, your individual medical history and treatment responses Still going to dictate the treatment you get. Just overall I thought it was kind of interesting. I'll put these links out. There's an interview with a Dr. Michael Ward. He's the chief of clinical trials and outcome ranch at the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Man, that's a mouthful. He says, “we took the opportunity to revisit some previous recommendations for which substantial new evidence was available and also included new recommendations on some other topics such as imaging”. It's really great to see that there. Even though we might not think that it appears there's a lot going on behind the scenes, the doctors are still working on trying to figure out more and more about these conditions we deal with that are all interrelated to Ankylosing Spondylitis. So the big thing is going to be as I mentioned, with comorbidities is the ophthalmologist which I've mentioned in other episodes, make sure you have an ophthalmologist that's familiar with treating as because of the I write us and the conditions that you can get with there's also like I said, there was the question And recommendations for a is centered around the use of the IL-17 inhibitors which are like Cosentyx, Xeljanz. and then biosimilars, they're really looking at how everybody is affected and where I was saying that earlier, as I had mentioned that I had been on Enbrel then I switched to Humira and had very little long term success with either of those drugs, but then when I'm put on Cosentyx 5-7 years later and had great results with it for me so far, and I'm no longer allowed to take any NSAIDS due to kidney issues. So the Cosentyx has really been fantastic for me. And again, these are just guideline treatments. This is going to be a real short episode this week. And I hope you all have great luck in reviewing some of these and implementing them with your doctor. The whole key is to make you a more informed patient. So when you go to the doctor, you understand what he or she is, is trying to get at so that you can come to a better treatment plan because that's really what it's all about. Is getting you the best treatment plan you can have to mitigate some of the pain from Ankylosing Spondylitis and any other issues that you might be suffering from. So thank you again for listening. Hope you all have a great day and we'll talk to you soon. ByeFrom Ankylosingspondylitis.net – New Treatment Guidelines for Ankylosing Spondylitis: https://ankylosingspondylitis.net/clinical/treatment-guidelines-update/
Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing fantastic as this episode reaches you. It’s been just a great couple of weeks going on here as far as health wise, I mean, I've been dealing with some fatigue, but, you know, I hope everybody is feeling great, fighting the fatigue that you can keep up that good battle against Ankylosing Spondylitis. So recently I joined a service that pushes any reviews that that come in from anywhere in the world and I received two of them. One of them was from Australia, and it was from amwave, and this was from November of 2019. And they wrote, “I really enjoyed the well researched content and practical relatable tips.”Well, thank you and amwave, if you are listening, please reach out to me through the website spondypodcast.com I'd love to get in touch with you. The other review came in from the United States and it was left in January 19th by somebody that goes by wiscobri, and same with you, if you are listening, please contact me through the spondypodcast.com website. And they wrote,”Such a great podcast full of relevant conversations related to AS. Anyone living with AS will benefit from and relate to these open and honest chats.”That's what it's all about. I just want to do these things so that all of us that have Ankylosing Spondylitis can somehow relate, listen and not feel so alone. And before I do this week's Question of the Week, I thought I would point out that you may have heard an ad that I ran at the beginning of each episode The last few episodes for Joy Organics. I had Courtney Garber on an episode or two episodes ago talking about Joy Organics line of CBD products. So I encourage you to go out there and check there'll be a link in the show notes. Anything that you buy, it does create a small payment back to the show to keep it going. So I really appreciate it. If you follow that link and you're in the market for CBD products, I really appreciate it if you consider Joy Organics. So the Question of the Week, this week, I kind of decided to, instead of speaking a specific question, I'm going to pick one that I've seen a recurring theme for over the last several years, and that's something to use of DMARDs or otherwise known as biologics. And what I thought I would do is over the next few months, I'm going to start releasing some episodes, and doing some episodes on the DMARDs. There's really, I think, a lot of confusion out there. And I'm going to start at the maybe the 30,000 foot level, and then work down to a more more granular level of each type of product. I think some of the things that are being posted, may not factually be correct, but I don't know? The best way to to approach each of those. So I thought what I'd do is just anyway, do a number of different episodes, starting off at the real high level about biologics and working down to a more granular level, they won't all come at one time, they will come over a series of, you know, several months. So, you know, if you have really good or bad experiences with biologics, I'd love it if you went out to spondee podcast calm and contacted me to let me know what happened. And are you 100% able to relate that use of the biologic to the condition that developed where you told 100% by doctors that this is what caused it? We know this is what led to it? Or is it just anecdotal that you developed something around the same time that you took the biologic, and you're relating to that I'd love to know and try to see about putting some of that information together for a show as well. So you get no judgment. I don't. You're 100% able to believe anything. You want as far as what might or might not have happened with your medical treatment, I just want to be able to get it all together to share with everybody that listens. So that's this week's Question of the Week. It's really more of a statement of the week. But more to come on it and I look forward to really going more in depth with this topic and finding some great guests to help really delve deep into this subject of DMARDs or biologics. In this week's episode, I want to talk about chronic illness, living with chronic illness. It's something that we all experience; there are certain things that we encounter certain things that we deal with, that I thought I would address in dealing with chronic illnesses. There was a book written about 10 years ago called How to be sick by Tony Bernhard. I'll have a link to this in the show notes for you if you want to go over and look at it. Its subtitle of the book is a Buddhist inspired guide for the chronically ill, and their caregivers. And this is really something that whether you have AS, or you're living with somebody or caring for somebody with AS these are kind of eight things that maybe each of us as we deal with our journey in having Ankylosing Spondylitis and what it means to each of our lives, probably really needs to come to grips with. So this article was by Teresa Burchard, and I'll have a link to it as well. She really encapsulated a lot of what I think we all deal with and in one way or another, you know, “life isn't about waiting for the storm to pass” said Vivian green. “It's about learning to dance in the rain.” And that's a quote that the author wrote about dealing with chronic illness, and she herself had dealt with a chronic illness for six years with a Treatment Resistant Depression, little bit different than Ankylosing  Spondylitis, but still something that can cause you chronic pain, disease, mental anguish, everything. So in here she talks about, “I'm shifting my energy from finding a cure, to learning how to live around the illness.” turning to people with debilitating conditions, like fibro, lupus, chronic fatigue, AS, as well as meditation teachers, and thinkers. For instructions on how to manage painful symptoms, here are a few of the items that this author picked up on the way and tips on how to dance in the rain and where to find the courage to try again tomorrow because that's really what it comes down to, is we have to know that when we go to bed at night, we're going to get up in the morning and we're going to tackle that dragon again that disease AS and what it does to us. You know, I can remember many many days. When I would be having extremely bad flares and my hips, and it would take me 30 to 45 minutes just to get out of bed, because I had to move so gingerly one leg at a time, because of the just massive amounts of pain it sent through my hips, through my spine, everywhere. So, you know, I've lived with all this different pain through my whole life and there's certain things you you come to grips with, as you advanced with the disease as you age, and it's always a learning experience. So number one, Let go of the blame. Former law professor, Tony Bernhard, who wrote the book, contracted a mysterious viral infection on trip to Paris in 2001. In how to be sick, she wrote; “I blamed myself for not recovering from the initial viral infection, as if not regaining my health was my fault. A failure of will somehow or a different deficit of character. This is a common reaction for people to have towards their illness. It's not surprising given that our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted. The bias is often implicit or unconscious, but it's nonetheless palpable.”I read that and I was really kind of struck by it because it really goes to the core of when we look at Ankylosing Spondylitis or we feel how others look at us, that they somehow view that we're maybe faking it, that we're maybe not in the pain that we are, you know, as a kid, again, I always relate back to constantly being told that I was lazy, and that that really chewed into me and stayed with me for all my years until now I still deal with it in certain areas where I think something all of a sudden, I'm like, man, I can't be lazy. I gotta do this whether I feel like doing it or not. You still do it, and sometimes to the detriment of how I think feel the next day or the next several days. But, you know, that's something we all have those little things that were said to us, maybe not so little. But all the items have built up through years and years of dealing with this. And we really have to learn to let go of a lot of that as best we can. And use that energy that we use to hold on to any of those negative thoughts and use that to the betterment of ourselves, towards healing ourselves. So, however you choose to do that is your own path you have to follow whether that be through therapy, whether it be through religion, whatever process helps you, I encourage you to please follow it. Number two, Distinguishing your illness from yourself. I've said this many episodes over and over. I have Ankylosing Spondylitis, Ankylosing Spondylitis does not have me. We all know that in many ways, and I, I'm even reluctant to use this word, we see things of ableism I guess is the best way to put it, where people are doing their normal day to day activities. And look at us funny if we can't if we need to ride a cart through the grocery store, if it takes us longer to do certain things and that type of issue can again build up on you. So it's very important that you work with anybody that's helping you, anybody, your family, your friends, to let them know that you have Ankylosing Spondylitis, but you are not Ankylosing Spondylitis, you are, whoever you are. AS is just a part of you. It might not be a part you like. It might be a part that some days takes up all of the energy and attention and other days not so much. But again, you are not Ankylosing Spondylitis and you have to really figure out the best way to separate yourself from that. So I hope you find it if you share this episode with others that maybe are caregivers for you or others you know with as who maybe don't have as deep and understanding these episodes may help them have a better understanding and allow them as well as you to distinguish your illness from yourself. Number three, Address envy. According to Bernhard, the author, envy is a poison, crowding out any chance of feeling peaceful and serene in the mind. I can certainly understand this. I look at people doing different things, whether it be on social media, whether it be on TV, or whether it just be friends that live locally around me looking doing these different things and saying, Wow, I really wish I could do that. I wish I could still do that I wish I could still hike like I used to wish I could still do this or that. And sometimes you have to watch and make sure that it's great to remember what you couldn't, couldn't do, and whatever skill set you had and some particular item, but don't ever if you can, don't ever let that overtake your ability to still interact with your friends, and just congratulate them on what they're able to do and just remember the good times and share stories and laughter with them if if you can, because that's really going to be best to keep you interacting with people. The author wrote, “The antidote to this is a Buddhist term ‘Mudita’ meaning sympathetic joy, joy and the joy of others.” The idea is to be happy, as the author said, from her husband and friends to try and enjoy joy, their joy. So, you know, maybe they're enjoying a great hike that they did, and your friends come and tell you about it and you're able to mentally picture what they did, and enjoy that they're so happy from it. And maybe there's another activity that you guys can all do together next time because you're not able to hike or whatever, you know, Bernhard the author says, “it's okay to fake that term Mudita in the beginning, good will, will eventually enter our hearts and minds and bodies until it's a genuine expression.” So, again, if you are thinking along those lines, you know, as fake it until you actually learn the best way to internalize that and, and be happy for everybody around you for what they can do. There might be things that some of them can't do that you're capable of doing and they may want to be envious of you or better yet learn from you. Number four, Honor you limitations. You know, chronic illnesses are tough on people or people that are people pleasers, because the pleasing types, they can no longer escape by in their low maintenance ways. You know, as the author says, “it only took me a few years of suffering, the consequences to figure out that it's far more painful to not assert myself and cause a setback the last months than it is to say, I'm sorry, but I can't honoring my limits.” She says means I choose to stay home from a family vacation. And that type of a decision is painful, it can be difficult to make, because you're missing out on memories you're missing out on time with your family. Those are certainly things you'll never get back. But I know it's very easy for health to deteriorate and need to protect that and make sure that you are again, honoring your limitations knowing what you think, can't do that something that I'm 50 years old now. I'm not sure I 100 percent do that yet. I know I've pushed myself many times and paid for it for days and days where I'm just in excruciating pain. So it's one I work on. It's one I hope you can work on. It's one I hope you can find peace with.Number five, Connect with universal suffering. This one I kind of had to think about and go through what the author was saying. It really is more of something I've thought about before but anyway, she says there's a famous Buddhist tale of a brave woman whose only son had died around his first birthday. She says to Buddha, “can you revive my dead boy? Buddha replies, yes, but I will need a handful of mustard seed from a house where no child, husband, parent or servant has died. She returned to Buddha empty handed because death had visited every house.” Now when I say this, I don't mean any disrespect to any parents that has lost children. It's really just a, it's an overall reminder and a very powerful reminder that, that suffering is merely part of the universal suffering that all of us as human beings endure. So if I can place my pain in proper perspective, my heart opens and empathy for others. What I really look at what she says that is, my personal philosophy has always been, I'm just glad I can get up at a daily basis and take care of myself, because there's always somebody that's worse off. That doesn't mean that my pains not important. That's not in any way trying to diminish my pain, or to diminish anybody else's pain. That's strictly the way I personally try to keep order in my mind as to how I deal with my Ankylosing Spondylitis. You are certainly entitled to deal with your pain in any way you see fit. So, again, I hope you can come to some way of understanding how you fit into this concept of universal suffering. And what we have is a bad enough disease, but I hope you're able to as you deal with it, put it in perspective of what you're dealing with. Number six, Use your pain for good. This one you kind of say what, Rick Warren, pastor of the Saddleback Church in Orange County, the five love lessons, I think, is what it's called his book. He said, I'm certainly not going to waste this pain, about the sudden suicide of his son Matthew in April of 2013. One of the things I believe in that God never wastes are hurt, and that oftentimes, your greatest ministry comes out of your deepest pain, whether you're religious or not. What we can take away from that is that we We have our deepest pain with ankylosing spondylitis. I know I've had many times where I'm just excruciating pain. I'm up all night. And I'm sitting there and it gives me time to reflect, as best I can, on my personal situation, what I can do to not only cope with my pain, but can I help anybody else? Whether you have ankylosing spondylitis, or maybe it's just a person that needs help putting their groceries in a car because they're dealing with a young child and getting them in a car seat, and maybe the weather's not as nice or the weather's hot or whatever. There's all sorts of little ways that you could benefit other people without having to even think about what as is done to you are doing to you. And so, use your pain to come up with a way for for good. That's just all I can do is hope that you take out of this show. Some way to stop. Think about when you're in your deepest pain, and you're trying to deal with it. How could someone best help you? How can I help you? How could it just a phone call to do we want to talk when you're having a lot of pain? If so, reach out to me on my website, provide a phone number. And we'll talk through your pain, whatever it is that you're needing, you know, let somebody in your family know, let a friend know. Reach out on one of the communities on Facebook and ask for some connection with people. There's always somebody on those forums.Number seven, Let go of expectations. Anyone who's been sick for over a year, they know the disappointments of new treatments that promise to be yet or the cure of, you know, that might end this nightmare. And we see this all the time on the Facebook forums, you know, should I drink celery juice? Should I go to a vegan diet? Should I go to an all meat diet? Should I do this? Should I do that? There are all sorts of things being thrown at you. I'm not saying any of those things are bad. Just make sure that if you get so excited about one thing, even if it does not help you at that point, that doesn't mean that's the end of all the options. Good example. I'm now on my third biologic from doctor. The first two, they worked okay, but not long term. This third one has been fantastic now going on almost two and a half years. So if that first biologic treatment doesn't work well for you. Don't despair. Don't get down in the dumps. I know we all want the first thing that comes out to work. But move on. Let's try something different. Let's see what the next option is to help you in your quest to lessen the pain and slow down the progression of Ankylosing Spondylitis. She writes, “our suffering arises from our desire for certainty and predictability” says Bernhard, when we try and let go of our yearning for control, we can begin to know peace within. She writes, “imagine living in a world where we've let go completely, and it's okay. If we can't go to that family event. It's okay. If a medication doesn't help. It's okay. If a doctor is disappointing, just imagine inspires me to let go a little, then it's easier to let go a lot. And every once in a while, I let go completely and momentarily bask in the glow of that blessed state of freedom and serenity.”, let go of expectations as best you can. And then finally number 8, Find your tribe. You hear that said a lot. But really, that can be just as simple as...
Hello, and welcome to The Ankylosing Spondylitis Podcast. Well, this is the month of November and I hope everybody's doing well. First I want to take a minute to talk about the show itself. I cannot thank everybody enough for making October just an amazing month for the show. The download numbers were through the roof and the feedback I got on the episodes was fantastic. So I really appreciate that and we added in a number of new countries that have access to show Let's get right into the show for the Question of the Week, I saw several people asking the same question online and it is can Ankylosing Spondylitis be inherited? Is it an inheritable disease you know, from one family member to the next generation to generation, in essence, it can run in families. In one of those markers, they used to look at it as the HLA- B27 gene. Now having this gene doesn't mean that you will get Ankylosing Spondylitis, but it is one of those markers that they look for. I found this kind of interesting in that research has shown that more than nine out of 10 people with AS carry the HLA-B27 gene, that's pretty amazing. It's almost 100% of everybody has it having this gene does not necessarily mean you'll develop as, as I said, it's estimated eight in every 100 people in the general population have the HLA-B27 gene, but most do not have AS so if you have it, you may end up getting AS but it doesn't mean you will. It also shows that's one of things you can look at it and family members and this particular person in the Question of the Week, they were wondering if they should have some family members tested for it because they and the other sibling had it. So I kind of replied back that it's not going to hurt anything. It never hurts to know if that gene is present because it could go along to explaining some future medical conditions if they run into AS it's also something to know that as we said as can run in families that gene can be inherited from familymembers to family member and if you have AS and test show you carry the HLA-B27 gene and their is a one in two chance that you could pass on the gene to any children you have is estimated that between five to 20% of children with this gene will then go out and develop AS that's still quite a wide variants of it. I have three kids they were all tested for the gene and if I remember right to came back with it, one didn't maybe all three had it. I don't remember exactly what it was, but they were tested and I believe my two older ones did have the gene one is showing some effects. I don't know if she'll come to grips with it. And hope you know, personally, I hope nothing ever develops of it. The other one is not nor is the youngest one. With that said, let's move on to today's topic of discussion. The Question of the Week done, let's look at this week's topic. You know, when I was diagnosed with Ankylosing Spondylitis, I was told a couple of things. Now,granted, you know, this was 35 years ago, so a lots changed. But when I was diagnosed, I was told this is primarily a man's disease, you'll rarely if ever see it in women. And it's primarily disease people of Mediterranean descent.What we found out is that is obviously not the case. So we know that today all these advances have been done in the research for Ankylosing Spondylitis that in fact, women get it probably just as much as men. I found this really cool article and it talked about different things dealing with a woman's diagnosis with Ankylosing Spondylitis. Again, as we've all heard, and been told women don't get it, but we know that that is incorrect. And I've had to do is look through the boards on Facebook, you'll see that there's just a ton of women dealing with this condition. So as we know, Ankylosing Spondylitis is an inflammatory form of arthritis that we get that starts in our SI joints or spine moves up the spine and then or can affect your ribs, your shoulders, your neck, move down affect your knees. It's going to take it all into play when it does this thing. So female patients are still underrepresented in clinical research This under recognition results in a delay a diagnosis which causes under diagnosis and a delay of optimal treatment strategies, which leads to increased disease burden and female patients with Ankylosing Spondylitis. So it's really something that needs to be looked at and addressed. And thankfully they are number one, as common women, according to the authors of a research review about as a women a bias that as affects men almost exclusively as existed even through the first half of the 20th century. Earlier estimates figured that the male to female ratio to be in the area of nine to one today data suggests that the ratio is much more even, some estimates say two to three to one. So they're still showing a bias towards men having the disease but it's dramatically decreased. And I think you're going to find as they do more and more research on it that that drops from say, two to 3-2 to 1 down to maybe one two to one, it's going to be almost on par. One population study of Canadians and Ontario, which looked at the prevalence of AS between 1995 and 2010 found that although men had greater prevalence of AS throughout the study, the male female ratio decreased significantly over time from 1.7 and 1995 to 1.21 in 2010. That's pretty amazing.In other words, as is more common in men than a women, but not nearly as much as previously thought, All we need now is to get that message out to doctors. The others go on to say, but both doctors and women living with as symptoms don't know about as or suspected as a cause of women's back pain. It can lead to significant delays and getting diagnosed getting on proper treatment and on the path to feeling better. Number two, women take longer to be diagnosed with ankylosing spondylitis the pain and stiffness from AS can strike you know, not just in the lower back the pelvis or the hips, but we can get it and other joints as well. Anyone which is has connective tissue that link ligaments and tendons to bones. Basically, as you know, we can hurt all over it and it can lead to being a very debilitating condition. As we're well aware, older research found a staggering discrepancy in how long it took typically took women to get diagnosed with as compared to men. One study from the 70s found that for men, it was an average of three to four years. For women, the diagnosis delay was 10 years on average. So that really can play a huge part in the treatments that women need to get on to live a healthy and productive life with as more recent research from 2017 showed that 32% of women out of the study of 23,889 people showed the average delay in diagnosis for males was six and a half years compared to 8.8 years for women. So men's diagnosis has gone longer, while women's is shortened up a little bit, you know, and there's still some reasons for the under diagnosis. You know, could it still include the bias of as being only for men or differences in the disease? Depression and women that could be delayed or misdiagnosis according to this study. So again, a lot of information I'm going to have all of these links down in the show notes for you to go and do further research on your own. Number three women may not have as much radiographic damage. Again, this is going to get kind of technical, and I apologize if I do it any Miss readings of anything, but there's radiographs or x rays. I the single most important imaging technique for the detection and diagnosis and follow up monitoring with patients as well. Doctors take into account a patient's history, physical exam and blood work. Well diagnosing Ankylosing Spondylitis seeing damage to the bones on x rays is what clinches the diagnosis. If they don't see that damage on your x rays. Or it's hard for them to see or it's limited and in visibility. They're going to start looking for what's Osteoarthritis it's this it's that it can make the diagnosis of women even that much more difficult when you have the symptoms of AS but no radio Graphic damage. You may have a condition called non radiographic axial spaniel arthritis, women may be more likely to be diagnosed with non radial axial spaniel arthritis than men. The challenge though, is that newer biologic medications used to treat some as patients are not yet FDA approved for people with non radiographic axial spinal arthritis. So that may change is the FD is considering new indications. So if women are more likely to have non radiographic than men, they may also may be limited to the disease treatments. This is really kind of a catch 22 for women as they try to function and get proper treatment for AS. Number four, women may have different as symptoms which in parentheses, but this is debatable to symptoms as present differently in men than women. The answer depends on which studies you look at. Since results vary. Some research has found that women with AS tend to have more pain in their cervical spine and peripheral joints than men. However, other research is not for Differences between men and women in terms of which joints are affected by AS. Number five women have more systematic symptoms when you look in addition to the lower back and joint pain that is associated with AS multiple studies have found that female AS patients experience more inflammatory bowel disease than male patients do. Research also shows higher prevalence of psoriasis and inflammation, you know, skin disease and women than men. You know, those are the things you have to be aware of, and that can affect your as diagnosis. So make sure that you're talking with your rheumatologist to cover all your bases. Number six, women may have more misdiagnosis, I can understand the frustration I read on the forums of women that say I swear I know I have AS but I just keep getting told this and I don't think it's this but it's got to be that research shows that women who report having widespread pain are twice as likely to have a delayed as diagnosis. Those who don't The most common misdiagnosis fibromyalgia, which has some overlapping symptoms with as I see this on the forums all the time, I'm being told I have fibro and I don't think it is and so that I think that's a go to for many doctors when they don't see the damage that we talked about on the X rays. Previously, they jumped right to a fibro diagnosis because they may not want to consider a non radial axial spaniel arthritis diagnosis. So you have to be your own advocate, you have to be your best advocate, going forward with diagnosis and just go after the doctors and saying, here's what I need to know here's what's happening. And if that doctor doesn't agree doesn't seem to work with you go to another doctor. Keep going to rheumatologists and see what the different doctors say don't just settle with one doctor's opinion if if you think that that doctor is just not giving you the the time you need doesn't mean that their diagnosis is wrong. You have to wait for all the information there. ending to you but also keep pushing if you're not feeling better for any types of treatments that you're getting. Number seven women may respond to as treatment differently. The two mainstays of drug treatment for AS are the non steroidal anti-inflammatory drugs the N Said's, which helped reduce inflammation and relieve pain and then biologics, which target specific parts of the immune system to reduce inflammation slow down or in some cases, maybe even stop disease progression. Research shows that anti TNF biologics you know medications like Humira and bro Sims and some others may not work as well and women as in men, you make sure that if one biologic doesn't work for you, you may have to keep trying don't let that be a downer for you don't let that turn you off the biologics. You know, if you don't succeed on one, keep going. I'm on my third and this is finally one that's working fantastic. So don't think that you have to stop at one or that anything. After one is just not going to work keep at it. Other research has found that there are certain predictors associated with a better treatment response. These include having the HLA-B27, genetic marker, a short disease duration and not having taken TNF biologics before.Number eight women with as may have worse quality of life we know that's not really surprising that going longer without a proper diagnosis and treatment can impact the way women cope with as compared with men research from the Arthritis power research registry presented at the American College of Rheumatology in 2008 teens Annual Meeting found that there was considerable gender differences and how as affected the patient's quality of life. In nearly all cases, women reported that as took a greater toll on their relationships than men did. For example, well 45% of women said that as cause difficulty maintaining friendships, only 25% of men dead. In many cases, women reported that as affected their ability to function well work more than men 29% of women so That they were frequently late to work compared to 12% of men and 24% of women said that they had to switch their job as a result of as well. Only 15% of men said the same. Other research suggests that certain as side effects such as fatigue, night pain, sleep disturbance may affect women more than men and women who have AS and fibro and other co-occurring types of chronic pain may have different pain sensitivities, that affects how they handle the quality of life issues. Those were eight items that I briefly went over to discuss about how as affects women and it's not just a man's disease anymore. It's never been a man's disease. It just meant there was a lot of women that were misdiagnosed or undiagnosed. So how can women advocate for better health? One of the best things women can do is to make themselves aware of symptoms of as, as well as the differences in mechanical verse, inflammatory back pain. Make sure to press the doctor to see if, as could be possible diagnosis for you or your family members. or friends, you have to find a doctor who cares about you. If you don't like the diagnosis and you seem to not be getting the results from this doctor, go find another one. You know don't let that one doctor if you are unsure be the final say and in what you're dealing with, you have to be your best advocate. You have to be the advocate for your as treatment men, women, whoever you've got to go to the doctor you've got to have a set plan of what you're looking to do what you're looking to get out of that appointment. And don't hesitate to write down questions write down how you've been feeling keep a journal of my hips hurt this day, my my back hurt this day. The pain scale on a scale of one to 10 would be this document everything out because the more you can document everything out before a diagnosis of as has given the better you can help the doctor lead to that diagnosis. Again, I really thank everybody for listening. If you have any questions, don't hesitate to reach out To me, and I hope you all have a wonderful day and take care with this as we're all in this together. Goodbye.For the Question of the Week, can AS be inherited.  Here is a link to the article  (https://www.nhs.uk/conditions/ankylosing-spondylitis/causes/) that I took some of the items I discussed for the question.Everyone with Ankylosing Spondylitis has heard that “Women Don’t get AS” uttered by someone before. In this episode, I run down a list of 8 items from the article Ankylosing Spondylitis in Women: 8 Key Facts to Stop the Stigma (https://creakyjoints.org/education/ankylosing-spondylitis-in-women/)This article by Lauren Gelman from Creaky Joints is really an interesting bit of information with links to all sorts of studies discussing AS in women more in-depth.
In this episode I review and article from drugs.com that discusses The Top 16 Myths About Ankylosing Spondylitis Treatment (https://www.drugs.com/slideshow/ankylosing-spondylitis-treatment-1065). I tackle each myth and apply how I am affected or if I think it is Fact or Myth.I apologize for sound, I forgot to set the microphone for recording and episode was recorded from computer microphone.Also, in mentioning food, I meant to say that the types of foods you don't eat can help to reduce inflammation.
In this episode I discuss my experience with -iritis. If you have Ankylosing Spondylitis, changes are you will get -iritis at some point. Here is my thoughts on -iritis.
In this episode I talk with Vinnie Tortorich, author of Fitness Confidential (https://www.amazon.com/shop/vinnietortorich). Vinnie started as a trainer and along with books, he has a high quality vitamin store and a coffee club all accessible from his website (https://vinnietortorich.com). In 2019, Vinnie will be releasing FAT a documentary. Keep an eye out for this, I think it will be of great interest to everyone. You can also access his podcast from his website or directly on iTunes.
Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be the 23rd episode already. This is fantastic. In this episode I'm going to talk about, you've been diagnosed with Ankylosing Spondylitis. Now what? First I want to recognize that it's just been amazing. The number of downloads I've seen coming through for November, is looking like it could top October, which was a record month. So thank you to everybody that's listening. Thank you for all the feedback I've been getting. We've also had some people checking out the show from a couple new countries, South Korea, Bulgaria, Singapore, and Honduras. So welcome to those new places, and also a flurry of people out of Ireland have been downloading the show. So to all the listeners, Thank you so much. So let's jump in and do the Question of the Week.What was I going to talk about? Question of the Week. Oh, yeah. Brain fog. I don't know about y’all, but I've seen this discussed multiple times throughout the forums. I get these brain fog episodes. I get things like I can't quite comprehend anymore, and I myself get that. I do a weekly trivia game and there's answers that pop up that I know. I know them and I just can't think of them or I want to say something to somebody and I, I sit there and it just rattles around my head. I'm like, “I know the answer”, but why can't I get this out?Well, forgetting names, losing words, trouble concentrating. You know, brain fog is common. It can be disturbing. I don't like getting in and I'm sure nobody else does. It can be thing that causes concern when you're at work, if you forget things, will I forget things? Did I forget something? All that can play into your stress related to work and maybe even trigger a flare if it gets too bad? A study done in 2018 that was on Rheumatoid Arthritis patients, not Ankylosing Spondylitis patients, but I think there are enough similarities that is of interest in that study found that they think that there's a connection between inflammation and cognitive dysfunction. The inflammation disrupts signals between pain receptors in the brain literally fogging up mental functioning. That's very interesting. So I'd be curious if anybody's brain fog gets worse during a flare, have you noticed it? Have you noticed in times of high stress, your brain fog gets worse? You know, now, I haven't had any writing or spelling issues result of that. I'd be curious to know if any of you guys have mine is just recalling certain things. My recollection of facts and figures gets real murky. There are also some medications that may potentially cause some brain fog. One person I saw blamed their brain fog on Humira. I don't know if that's true or not, that's just what I saw them saying. Other drugs, such as prednisone, it's put out there to reduce inflammation, but it can sometimes affect cognitiveIssues. Again, I found nothing that said these were long-term effects. They were more short term when. drugs were in your system. There's also some cholesterol lowering statins, which may contribute to brain fog. I'm on one of those. And that may also be part of the issue. See, there we go. Couldn't get the words out. I'm going to do this, I suggest you do this as consult your doctor. I'm not a doctor. None of this is, you know, hard and fast medical advice is just to make you aware of some issues so that you can bring these up and talk to your doctor about them. So you're not going crazy. Most likely, these are not long term permanent effects they may most likely are medication effects. So again, talk to your doctor, see what he or she says is the best course of action going forward. I've seen one person and this is only for states where it's legal, obviously, who swears by cannabis to control the brain fog. It's not something I've tried, but whatever works for you is the best. So make sure that you're getting a lot of sleep, stay organized, if it's affecting you, and a lot of different areas of your life, plan out your day if needed, and take time out. If you have to take time out to kind of step back, reset yourself, do a meditation, whatever it is to kind of calm yourself down and get yourself back into a spot where you can process information correctly. And now, let's go on to the rest of the episode. So you've been diagnosed with Ankylosing Spondylitis. Now what? You know, maybe you just received this diagnosis from your rheumatologist you've been seeing. This could be your first rheumatologist, could be second, third, or fourth one if you were having issues with any of them. They've given you, lots of information. There are some things you want to generally keep in mind when looking at Ankylosing Spondylitis. You know, when did you start to notice symptoms? Did you experience the pain for three more months? Do you have more pain in the morning or evenings? Can you exercise the some of the pain? Those are some things that the rheumatologist may ask. Those are things that you want to just kind of keep in the back of your mind as you work with your rheumatologist and maybe start to journal your experience with Ankylosing Spondylitis. So you get a better idea of how to get a handle on them. You know, once you've been diagnosed, the rheumatologist is going to also want to know stuff like family history, personal history, do a physical exam, imaging, like x rays and MRIs. And finally, blood work. Seems like every time I go into a doctor, they're drawing blood to test me to check how the medications are interacting with me. I was diagnosed in 1984 at the age of 14, and finally had why I had been in pain for the last few years. Being only 14, how can a diagnosis be processed by a 14 year old. When there was no such thing as the internet, there was no such thing as talking to other people that had Ankylosing Spondylitis. It was just here's what the doctor said, here's what you can take and come back in six months. So there really wasn't any way for my 14-year-old mind to process anything. I just said, okay, and went on with my life. As an adult, not sure how I would deal with that, especially now with the internet, which is great and allows you to connect with people research things, but you can also over research some stuff as an adult, you are going to think about this much differently than I did as a 14 year old kid.Looking through the websites, as I was going on thinking about this, I found a great article titled, ‘Newly Diagnosed, Four Things You Should Know, by Lisa Marie Basile (I hope I said that last name correct). She is such a nice person. I've reached out and talked to her several times. Here is a link to this article. It's fantastic. So this is really going to be a summation of a lot of what Lisa said, her information is so good. Number one, your emotional responses to your diagnosis are totally valid. You know, you might be angry, you might be sad, you might be a little bit happy because you finally figured out what's going on and have a way to treat it. But any type of emotional response you have is valid because you're the one that has to deal with it, and your emotions could go all through those things in a matter of minutes, seconds hours. I was just a kid when diagnosed, so my emotional reactions were different.As an adult, you don't like present you might have anger, also confusion, fear, whatever. They're all valid. Process them, deal with them as best you can. If needed, look into therapy if you need to go that route. There's nothing wrong with that. So remember, if anybody tries to tell you that your emotional responses are inappropriate based on you're diagnosed with AS that's not true.Number two, use the internet to your advantage. But don't use it too much. As Lisa said, there are great support groups on Facebook dealing with Ankylosing Spondylitis. You can look up people on Instagram dealing with the same condition using various hash tags. If you need to talk to someone like a therapist, I encourage you to do that. Whatever makes you better able to tackle this diagnosis of Ankylosing Spondylitis, so that you can still remain a happy, productive, healthy person in whatever way or form or shape that is.You know, when you get online there's all sorts of both positive and negative posts that you can come across. So, deal with those realize that everybody has Ankylosing Spondylitis differently and affects us all differently, but though it's the same disease, it affects us all differently. So somebody might be dealing with something a little more dramatic or, severe than your are. Take that for what it is. If you can offer support or you want offer support, feel free and go for it. If you can't, you know, just move on, we're all here to support each other as best we can. Also, listen to your doctor, as you're dealing with it and you're looking on the internet. There's nothing wrong with researching medications, researching side effects. But remember with medications, side effects are usually listed as potential side effects, not guaranteed side effects. I see this a lot with biologics as people talk about them. Many will get online and treat a biologic like they're going to get those side effects. You know, you may you may not everybody reacts differently. Is it important to know what the side effects are? Probably. Again, I'm not a doctor; discuss it with your doctor. When I was put on a certain biologic, I never even thought to ask what the side effects were because honestly, I didn't care. I had so much pain that any side effects could be dealt with. I was just looking for something to help try and ratchet back some of the pain I was dealing with.Number three, keep moving and stretching as much and as often as you can. Anglo spondylitis isn't a disease you know that will require you to exercise to fight its progression. The more exercise you can do, the better. Don't go out and go crazy without first discussing it with your doctor to find out what he or she recommends is best for you to do. I am a perfect example of what not exercising will do. My back is seized up. Exercise wasn't discussed much, you know what was always said was deep breathing. I've had multiple hip replacements, which limits the exercises I can do, but I wish I would have started this 30 years ago. I now do some limited push-ups, meditation, I try to do some yoga, but if you're much more able bodied than I am, keep that going. You know if you're in pain and all you can do for the day is walk, walk. If it's walking around the block near your house, walking down your driveway, or just walking across the house. It doesn't matter anything to keep moving as good. As I've said in other episodes, when I watch TV, in between the show like when the commercial break comes on, that's what I do push ups.Goal is 10 push-ups. When I get 10 push-ups done during commercial break, which is easy to do, then I'm happy. That's some movement for me. You can set up whatever works best with you and your, with you and your doctor. Look into yoga, there's lots of yoga videos on YouTube. If you're in a more metropolitan area, there's a ton of yoga classes you can look into whatever works best for you. Some people you're going to see, especially if you're newly diagnosed, you just see that they're able to do really heavy exercise, you know, CM, weightlifting, all this crazy stuff that I, I wish I could do, but I can't. Before you jump in and say, Man, I'm going to run to the gym and become a power lifter. Again, I can't emphasize enough, talk to your doctor, let him or her tell you that those are the exercises that they want you doing. And they think that those are the best to help keep you going. Do you know but at the same time, do what you feel comfortable with or cause you a lot of pain. You know, ratchet up back and do what you can do without putting yourself in excessive amounts of pain. Number four, not everyone will understand your perspective. You may look healthy and normal on the outside, but some people won't understand that. It's really an invisible illness and effects mostly stuff on the inside. Again, I'm a little bit different because of my lack of exercise and hip replacements. When I walk, I walk with a cane, I'm hunched over, I have a brace because of a drop foot. People can tell there's something wrong with me. But they can't tell that what. I pulled into a handicapped parking spot, because from the waist up, everything looks fine. As I'm sitting there in my car, and I have had people come up to me in the handicapped spots and knock on the window and ask why I'm parked there. They're thinking, I'm assuming or thinking that I may have dropped somebody off that I'm parking there illegally. Whichever, is it right of them to do? No. But they do it. I can't control others actions. I've gotten out of the car before with my cane and then said, Can I help you and that usually shuts them down pretty quick and gives an apology and they walk away. But you have to handle it. You're going to have people say, maybe it's a fake illness. Some of the worst things is maybe your family, your spouse, they may not understand what you're going through, share this podcast with them. Let them hear from somebody besides you that this is not a fake illness, that it really is something you're dealing with, so that they can better understand why there's those times those days when you're in a lot of pain. You know, you wake up in the morning and you might see your spouse and you your body feels good. You take a shower, everything's fine. And when you get home that night, you're stiff, you're sore, your spouse wants to go out, and you’re just burned out. You can't do it. It's caused all the fatigue in the world to you. They get upset with you. That's going to happen. It happened to my last marriage. She couldn't quite understand why I was dealing with what I was dealing with. She gave it a good shot. I can't critique, or I can't say negative that way she tried, but it was still very hard for her to understand. So, you know, build a support network if your family's not helping or able to better provide that support network for you. Join one of the Facebook groups. There's many of them that deal with Ankylosing Spondylitis. Just type that in the search on on Facebook and you'll find all sorts of groups with a lot of really good people out there.You know, like I said, share this podcast with them.Anybody that's not believing you and, you know, just do the best you can do every day. Be the best that you can be. You know, seek out the support groups. There's depending on where you're located at listening  there's national Ankylosing Spondylitis organizations like Spondylitis Association of America here in the United States. There's also the Canadian Spondylitis Association, the Australian Arthritis, which deals with Ankylosing Spondylitis as one other items. So there's a bunch of them. I'll have links in the show notes to the different national organizations that I know of. Look into those and see if one of those provides any local support groups for you.It's not easy. You know, while I'm very sorry that you were diagnosed with Ankylosing Spondylitis, it's also not a death sentence. It's not the end of the world. You just have to learn to adapt, and then overcome.I know that might sound easy and You might think this guy's nuts. How am I going to overcome this? You'll find a way I have faith in you make sure that you can. I have faith in you, I think you'd be able to do it just fine.  Make sure you go out and find me on Instagram at @ as_podcasts. And I look forward to talking to you in the future. Bye!How Doctors Diagnose Ankylosing Spondylitis: https://creakyjoints.org/doctor-patient/how-ankylosing-spondylitis-is-diagnosed/Spondylitis and Brain Fog: https://www.myspondylitisteam.com/resources/spondylitis-and-brain-fogSpondylitis Association of America - https://www.spondylitis.orgCanadian Spondylitis Association - http://www.spondylitis.caNational Ankylosing Spondylitis Society - https://nass.co.ukArthritis Australia - https://arthritisaustralia.com.au/types-of-arthritis/ankylosing-spondylitis/
Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. I decided in this episode I was going to kind of revisit some of the areas that we had already touched upon and some issues I’ve been having with my right eye brought this upon. I started looking around I said, you know, I've kind of touched about all this, but I'm going to tie them into this package of nine possible complications that we can come into from having Ankylosing Spondylitis. The actual nine possible complications came from an article in Medical News Today that I'll have linked below. But a lot of these are all things that those of us that have Ankylosing Spondylitis need to be aware of, we need to watch out for this. If anybody's listening for the first time, Ankylosing Spondylitis is a chronic autoimmune disorder. Anyone that's diagnosed with AS needs to be aware of these complications, that it can present to our health, both physical health and mental health. There are a lot of things that we need to be aware of. So first, this week's Question of the Week, saw a post yesterday that kind of touched me it was one where the person said that they were really kind of feeling ignored by everybody withdrawn. No real social life, at times, maybe despondent, maybe it's a little touch, but I'm going to use that word despondent, many people and what some fantastic to see jumped right on and told this person, hey, you're walking around here, and I understand how you're feeling. But you know, chin up, all of that is great to support the person. I love seeing it. But this person's emotions were not wrong. As I touched on in the last one, they have to own their whole scope of emotions, and then deal with it in the best way that they can. So I hope this person gets any type of therapeutic help that they need, build a support network, even if it's support that you don't physically see the people but you talk to them online. All of that is Good because we know that this disease can really affect you socially. And overall it can just be a real, a real isolating type of item and we'll talk a little bit more than nine items. So anyway, I saw that I was really happy to see everybody jump right in and discuss with this person. So kudos to everybody that is listening that takes place at the forums participates and offers a friendly shoulder to cry on so to speak when it's needed. I really enjoy that about this community. We're going to look at the complications as we've said, Ankylosing Spondylitis you know as a type of arthritis, and if based upon triggering painful inflammation in the body, whether it be in the hips, the knees, the feet, the elbows, the, you know, ribs, whatever. As the condition progresses, if the inflammation remains unchecked, other complications can arise in our life. It's very important to get the inflammation controlled that can be done by diet that can be done by medication. or some combination of all of the above. If you're having questions, not sure where to start, talk to your doctor. These items I'm going to go across just so I can get this out there. I am not a doctor. This is not specific medical advice related to you. It's for informational purposes only. If one of these sounds like it's something that you are having a struggle with dealing with, or concerned about, consult your doctor talk to him or her so that they can help you work through the stages of what needs to be done to alleviate this problem or head off this problem. Number one, eye problems we all know about uveitis. I write on the type of conjunctivitis that you might get through having Ankylosing Spondylitis. As I've said in previous episodes, you really want to have now this really applies more to the United States because I'm not sure how doctors work in other countries), but if you have Ankylosing Spondylitis in the United States, you really want to have an ophthalmologist at a minimum on call. The ophthalmologist can usually, if you talk to them and say, “Look, I have Ankylosing Spondylitis, it can develop to iritis. There are times I may need to call and have an emergency appointment”. The doctor, the ophthalmologist should be well aware of that condition and be able to get you in quite fast though, they'll understand the need to get this treated quickly. So remember, if inflammation spreads to the eyes, it can cause symptoms, like where your eyes will get swollen, painful, red and puffy. You might think oh, I've got pink eye if you have as we go getting anything treated for pink eye, always just default right to uveitis and have the doctor treat you that way. Is there a prescription medications that they can provide to you get in there, get it treated, and don't let it go too far. Number Two, reduced flexibility. This is what I deal with. When I was a kid. The doctor started testing me and saying bend over and can you touch the floor. I couldn't now I'm lucky if I could just bend over and even a bigger challenges for me standing up straight. I covered this in a previous episode where I talked about exercise, do what you can, don't overdo it, but do what you can to keep your range of motion strong. Make sure to adjust for your posture, make sure that you're sitting correctly. If you have a job that requires a lot of sitting, make sure that they try to accommodate you with a better chair if available, or whatever they can do. My old employer had a whole ergonomics department, they would come right to your desk and measure the way you're sitting they measure your chair and my case I just had to provide a doctor's note based upon my disability and they went and got me a special chair to sit in which was awesome. The only part was that as people kept trying to take it, but because it was a unique chair, I could always go figure out who had it and we'll go back to my desk, make sure that you're adjusting for those things. If you have a home office, you know maybe you look at getting a good chair, whatever it is to make it better for you. Number Three tiredness or fatigue. One thing that will come across a lot and Ankylosing Spondylitis is fatigue. In my case, I was so tired, I'd moved into a new house and just a thought of unpacking a box, maybe sit back down on the couch and be exhausted need a nap. After working a full day. I just couldn't have the energy didn't have the energy to actually unpack. So I went to my doctor, and he started doing a bunch of tests on me obviously started off with a blood test. And he said, I'm going to check your testosterone. I said, Okay, I've never had that done. He checked it, and I was really low. And he says, there's your problem right there. Now, I don't know if that's as related. I can't say it is can't say it isn't. But I got the testosterone shots, and I'm still on him to this day. And it's been an amazing item for me providing the energy back that I lacked. So talk to your doctor. It could be vitamin B shots could be any number of things that he or she could detect and offer to help with some of the fatigue that Ankylosing Spondylitis brings in. You also may be prescribed biologics. The Enbrel’s and Humira has some of those by reducing the inflammation can then turn around and if the inflammation goes down, your body isn't fighting it so you're not as fatigued. So like I said, there's a, there's a lot of ways to address this one and then again, another option is on top of all these other ones is exercise. Keep all that in mind, talk to your doctor. But if you're tired all the time, there may be some very good ways to help adjust some of that and work with it. Number four, Osteoporosis. Osteoporosis is a bone disease that makes the bones less dense than normal, it occurs in the body loses too much bone or makes too little bone the most can become brittle and may break more easily. This is something that can develop in the spine of people with as the bamboo spine and so the risk of spinal injury becomes greater. You'll see this discussed online when a lot of people say I'm going to my chiropractor and there's others that say don't I personally don't go to a chiropractor and won't go to one because my spine is already fused. So you know, I'm not going to take the chance that even though the doctor may say that he or she knows what they're doing. They really do. So you know, this creates a lot of contention online. If your spine is not fused, yet chiropractor may work for you, if your spine is fused, you may want to stay away. It's really your choice and then according to a study and current rheumatology reports asked you a process frequently occurs in people with as even in the early stages, the disorder is a severe inflammation caused by as that is not to contribute to it. So, you know, again, talk to your doctor, let him or her discuss with you the options and what's best going forward. If you have been told you might be developing any osteoporosis to go along with it Number Five gastrointestinal disorders. I see this online with different people talking about different gastrointestinal disorders that they have developed. And again, current opinion rheumatology did a report that said up to 50% of as patients have inflammation, their gut inflammation in the intestinal tract and bowels can also contribute to issues like stomach pain, stomach ulcers, diarrhea, problems with digit digesting and more severe conditions can lead to something you know, like maybe Crohn's disease or any number of other items that I see people talk about. I've been fairly lucky and have not had any real gastrointestinal disorders. So knock on wood it stays that way. I do really feel for the folks that have it I that's one that has got to be real rough. Number six, increased risk of heart disease people with as may also be at increased risk of developing some heart problems, cardiovascular issues, that as contributes to include aortitis, aortic valve disease, conductive problems, ischemic heart disease, and cardiomyopathy. So taking preventive measures to reduce the risk of any cardiovascular symptoms or disease is important what those of us with as again, it goes back to what the heart disease regular exercise, eating a healthful diet are all part of a good treatment for people with as and to reduce the risk of heart disease. It also helps people to avoid tobacco use and maintain a healthy weight. So in my case, I don't use tobacco. So that's not an issue. The Healthy Weight has been my problem and I'm in the process of trying to lose some weight. So we'll see how that goes. Number Seven, this is one that relates back to the Question of the Week. Number seven is social unemployment problems, you know, with having Ankylosing Spondylitis should not always have any direct impact on employment, we know that it does. If you're unable to work for long periods of time, or if you're in constant pain, when you're at work, all those can make keeping a job much more difficult. Again, I'm going to use the state's here because if there's number of places that are at will employment, you know, if you miss work, they can cut you and they don't have to give any reason and it makes it harder for you to prove that there was a wrongful termination. So my suggestion again, I'm not a lawyer, but if you think that you're going to be missing time from any job due to your Ankylosing Spondylitis, make sure to go out and get the FMLA set up through HR Also, if you think that there's any contestable issues or contentious issues With your HR department, one thing to remember is generally with your HR less is more, they're there to protect your company, they're not there to protect you. So if you think that you're being treated in poorly or incorrectly due to your job due to your boss due to anything that's around the employment, your best bet is to always seek the services on attorney first and have them walk you through what might be the appropriate items to discuss with HR, what might be the appropriate items not to discuss, get an attorney, if you think there's any issues with losing your job, then there are a couple of rare complications and to be honest with you, I had never heard of these before. I'm not really affected by them, but I'm going to go over them. Number eight, and I'm going to butcher these names. So please, I apologize for this. I don't have a medical background. So saying some of these Latin terms always throws. Number Eight Cauda Equina Syndrome, inflammation that we all have with as could cause bony overgrowth and lead to an extremely rare condition called Cauda Equina Syndrome. This condition causes bone growth, which leads to pressure and swelling at the end of the spinal cord. The swelling can compact the nerves the lower back and cause symptoms such as pain and numbness, stinging or tingling sensations in the legs, inability to walk in incontinence, if left untreated Cauda Equina Syndrome can lead to paralysis and other severe issues. If you think you have that think there's something you might have talked to your doctor about it that was rare, so make sure that you're informing your doctor that you think you may have thisNumber Nine Amyloidosis. I butchered that one, is caused by the buildup of protein called Amyloid in the organs; amyloidosis can cause symptoms such as weight loss, water retention, and tiredness. Again, this is a rare syndrome, rare complication. So you're having these issues, talk to your doctor with that amyloidosis. You might have any symptoms that resemble nerve damage, such as tingling in the hands and feet, and there are some medications that are used to treat this. So But again, it's a rare item So now that we've looked at these nine items, what are some of the treatments, these are going to be really basic. So the more in depth treatments you want to talk to your doctor about. Remember Ankylosing Spondylitis presents itself in a variety of ways. And even though we have the same disease, we don't always have the same complications. Everybody in this is different, which makes it so hard. So doctors are also going to prescribe a number of different ways to treat it could be assets to help with reducing inflammation, that's usually one of the starting points up to things like the various biologics that are out there that can help to control the inflammation and then reduce some of the progression of as not cured. I'm going to cure maybe taking you out of a flare, reducing or slowing down the progression alongside medical treatments. Doctors also might suggest that we do some physical activity, come up with a workout plan. If you're like me and you're overweight, start off with something simple, do what your body can do, but don't overdo it. Maybe it's physical therapy that the doctor puts you in. There's light stretching, get out one of those rubber bands. You know from like a Walmart or a Meijer or you know, Academy or whatever you have around that you can use just stretch your legs and stretch your arms, if that's the basics of what you can do. There's also that exercise like swimming, bicycle riding. If you can do that those all can help promote flexibility and reduce some symptoms. And then once you're done, use either ice or hot pockets on any of those to help reduce some of the inflammation. Overall, Ankylosing Spondylitis we know is complex disease disorder, and it could cause some serious complications for all of us if they're left unchecked. The great thing is I don't see a lot of people talk about not doing anything with it online. They're just curious as to what the best path is. And it's very hard for a bunch of people to tell you what you should do. That's not safe. Have your doctor tell you what you should do. But always be aware of any symptoms or side effects because you want to make sure you live a good, healthy, happy life. Find a treatment plan that works for you. Just go forward. Remember, we're all here to help each other and I really appreciate You're listening. It's fun to do these. I love getting the feedback from everybody. And I wish everybody just a great day and successful time in dealing with their Ankylosing Spondylitis. ThanksLink to Article: https://www.medicalnewstoday.com/articles/317500.php
In this short episode, I discuss my fusion journey and some of the things I encountered as well as some of the things I do now to fight off fusion. I reference the following two articles in this episode:   https://www.healthline.com/health/progression-of-ankylosing-spondylitis#who-is-affected?   https://www.healthline.com/health/ankylosing-spondylitis-men-and-women#1 If you are looking for great vitamins, or CBD oil I would ask that you consider purchasing from my webpage. It doesn't increase your cost but does allow my site to earn a small commission to help keep this going.
Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. This is your host, Jayson Sacco and I hope everybody is having a fantastic day. You know, personally these last few weeks, I've been really dealing with some what seems like extra amount of fatigue. And I don't seem to be the only personal loan as I read through the Facebook forums, notice a lot of questions on fatigue and how do you handle it? What do you do and where's it coming from?  It sucks and whatever else, you know, people are talking about. So this week's Question of the Week is going to be what do I do about the fatigue? Well, we all know that with Ankylosing Spondylitis, we have increased inflammation, and that inflammation can lead to sometimes excessive fatigue depending on on the level of inflammation. So there's really a couple things we can look at now. In my case, I don't know if so much the fatigue is caused by inflammation or if I'm just not sleeping well enough at night, I think that's really my issue, not getting a quality enough sleep. When I do get some sleep, and I have a Cpap machine, and my mask just hasn't been sealing. My mask is old and I need to replace it. So I think that will fix some of the issues. But we all know that for a lot of us, the main culprit is inflammation and how does it dovetail in with creating the fatigue? Well, if you have inflamation issues, you know along your spine and your hips, wherever they can release a chemical that has a role in the fatigue that we deal with. So that's just one thing you want to think about is if you're feeling fatigued is the underlying symptom really inflammation that's just not being treated properly via medication. So we also know that with these we want to aim for sound sleep, which is me. So this particular paper that I was reading, gave a few tips. Some of these are easier said than done. Go to bed at the same time every night, including weekends. Well, that's fairly easy to do since I don't have much of a social life. So going to bed at the same time is usually not that hard. Take breaks throughout the day instead of naps. Well, that's interesting because I tend to fall asleep in odd spot. So you know, I can just konk out in the middle anywhere. So it's not really an issue of taking a nap. It's just a maybe a power 10 minutes that I might be out. Another item is do relaxing pre bed activities, such as deep breathing exercises. Avoid sleeping in on the weekends, or vacation days. I don't generally do that. I'm pretty much up between six and seven every morning. Take a warm bath before bed. That's probably not what I'm going to try. But if it helps you, great. I'd love to have a hot tub. I think that'd be fantastic. And then regulate the temperature in your bedroom. Well, mine stays, you know chillier than the rest of the house. But that's just a function of the way that this particular place is built. So another thing you can do is check for anemia. I know I have anemia and I take 50,000 IUs of iron once a week. But if you're getting frequent headaches, dizziness, shortness of breath, or have some pale skin, that could be signs of anemia, and you want to talk to your doctor about that addressing that might help you sleep better. I think it's really a function of doing all of these but you know, address each one, one at a time. There are some dietary considerations. I know myself, my snoring, which is my sleep apnea is a function of the weight I've put on, I need to lose a fairly large amount of weight for me, and I think in doing that, I would have less sleep apnea and thereby less fatigue, and maybe less inflammation. Get some exercise. Again, easier said than done. But there's always something we can do. I try to do some exercise before I go to bed or while I'm watching TV. You have to figure out what fits best for you, your pain levels, your ability, what what you're capable of doing. So those are just a couple of really basic things to consider with the fatigue and really more designed around before you go to bed, the more we might be able to wear ourselves out before going to bed, the better we might sleep. So it's just something to consider and see if that doesn't help you out at all. And now on to today's topic, and I came across this article and it is about a year and a half old. But I don't think that much has changed in relation to this topic. And that is, you know, Ankylosing Spondylitis in Men and Women. What are some of the differences? Now, we know Ankylosing Spondylitis is a form of arthritis and autoimmune disease. There is some question of whether maybe the classification might change but for right now, that's kind of where it sits an inflammatory disease. We know that it affects the spine. It can cause pain, can limit range of motion and it involves flares. You'll see many people talk about flares and I'm having a flare up that can cause you know, acute symptoms, and then maybe followed by a remission, but flares there is no timeframe, you know, it's going to last a week, it's going to last two days, it's going to last six months. You don't know it's a big unknown. So hopefully, if you get one, it's followed by a period of remission where it's not such a severe set of symptoms for you to deal with at that point. Now, Ankylosing Spondylitis can vary a lot from person to person, symptoms can be severe, but as we know not everyone with AS develops spinal fusions or has serious complications. Some people might have a much more mild case where others might be much more severe. Mine developed very young, very hard hitting. So by the time I was 14, I was in extreme pain and that lasted for a good 15 or so years, and then, you know, it was brief bouts of remission in there. But by my mid 30s, it started changing a little bit. Come into my 40s I had more pain, second I had more hip replacements. And then now I've been on a good biologic that works for me for the last couple years and that's really made a huge difference. So anyway, symptoms can be severe, as I said, but not everyone with AS develops, you know, the spinal fusions are as the serious complications. What we do know is that neither age nor gender affects the severity of the disease. So that's kind of interesting, and that's good to know and what was once thought, you know, to be more prevalent in men, and there still is a few more men diagnosed versus women diagnosed. I think that number like I've said in other episodes is really going to come in parody as more and more women are properly diagnosed and are not left off on the sidelines with some different diagnosis just to, you know, get them into medication and move on, then this delayed diagnosis and women can then mean that they may have more of an advanced disease due to being you know, misdiagnosed for X number of years, however long it took them to get their diagnosis. There is some research that does suggest there are differences in the way men versus women get the disease, and function with the disease and the progression of the disease. But the findings have been kind of inconsistent. So, you know, there is nothing at this time that says you're going to see this in women and this in men, but they are trying to look to see which way each of the sexes is developing and advancing with AS, and then part of the problem is that research has focused heavily on men. But again, as with the items that starting to change, as more and more women are diagnosed or their misdiagnosis is corrected. So some recent studies have included more women, but there's not enough data yet to reach from conclusions about the differences and sexes with AS and well the exact cause of AS is not clear. There is a pretty good idea that genetics play a role. One risk factor for as is having a family history of the disease. I find this interesting because in my family, well, we don't know that many generations back. I'm the only one with it. So I am the entire family history of Ankylosing Spondylitis for my family. But I know there's others, fathers, daughters, mothers, sons, you know that it's passed down from from generation to generation. We know that as Ankylosing Spondylitis progresses, you know, the pain becomes more debilitating and can cause a reduced range of motion. You might also experience pain in other areas of your body. You know, be your hips, neck, shoulders, feet, those are all susceptible and many more to damage from Ankylosing Spondylitis. As some people, you know, they're only going to have maybe some very intimate and back pain, very minimal back pain and discomfort, while others can be quite severe. Mine is quite severe where I've had already the fusing of the spine, and some fusing in my neck. So, you know, everybody's going to be different. I’ve met people that have had it for a number of years and have had very little in the way of fusing so it's great for them that that's the version of Ankylosing Spondylitis that they got. It can be debilitating as we know and then it can eventually lead to disability. Early symptoms, you know, fevers loss of appetite, fatigue, anemia, inflammation of the eyes, iritis and uveitis I've done episodes on all of these in a bit more detail that you can find in my past episodes.Genetic predisposition. You know, many people with AS have a gene called HLA-b27. However, having this gene doesn't mean you'll develop Ankylosing Spondylitis and on the other side of that, not having this gene, you could still develop Ankylosing Spondylitis. So the link between HLA-b27 and Ankylosing Spondylitis, we do know varies by race and ethnicity. For example, among Caucasians, about 95% of those who have as test positive for the genes, about 80% of people from the Mediterranean countries do, well, only about half of African Americans with AS test positive for this gene. So again, these are all areas are looking into and it's really stuff that can change on a year by year basis as more and more research is done on Ankylosing Spondylitis with age, arthritis is also can sidered a disease that comes about as you're older, it's what the seniors will get, as I used to think when I was much younger. But Ankylosing Spondylitis commonly occurs in people between the ages of 17 and 45. Some younger, some older, some people are diagnosed as early as kids and that was me. Others I see are getting their diagnosis as in their 40s and 50s. But maybe have had problems since the 20s. The age of onset is about the same and men and women. It was previously thought that men with AS are more prone to pain in the spine and back than women. But there's been more research done. That indicates that back pain is the main symptom for both men and women seeking diagnosis. In addition, it's found that women have more neck hip and knee pain, while men generally might have more foot pain. Again, these are general items. You as a woman could have, you know a ton of problems in your feet and little in your hips, I am a man I had a ton of problems in my hips. So they're general. But again, everybody's gonna be different, you know, reproductive health concerns, as affects men and women during their peak reproductive years, but does not really appear to affect fertility. It can affect and you'll see this if you read through any that the Facebook forums is the function, the ability to be intimate the ability to create kids can be slowed down or minimized or even reduced, not because of inability to be, you know, create the children. But because of the pain associated with conceiving, caring and birthing the children, women with AS who are pregnant or trying to conceive, really want to talk with their doctors to find medications that can help them keep inflammation under control, and have even seen some women online comment that once they became pregnant, and got into the pregnancies that put them in a remission from Ankylosing Spondylitis. So obviously you can't spend the rest of your life pregnant. But that's been beneficial for some of those women over those nine month periods. Symptoms such as a stiff spine, back pain can continue throughout pregnancy, and NSAIDs, you know, non steroidal anti inflammatory drugs, like ibuprofen or Advil can help relieve some of that pain, but can cause harm to your unborn child. So, don't just take them because you used to take them. Anything you're putting into your body when you're pregnant, as you well know, can affect the baby. So make sure to talk with your doctor about what's appropriate for your pregnancy. As a side note, really not dealing with pregnancy or fertility or anything like that. But I came across an article from a magazine. It was a study done back in 2015 was when it was published and it was called Sexual Dimorphism in the Th17 Signature of Ankylosing Spondylitis. I'm not going to go real deep into this because I butcher it with all my medical terminology pronunciations. But what I will say and I'm going to put a link to this in the show note is the conclusion was kind of interesting. The conclusion read the results of the study demonstrate distinct sexual dimorphism in the activation status of the immune system, in patients with AS, particularly in the Th17 access, this demorphism could underlie sex related differences in the clinical features of AS and could provide a rationale for sex specific treatment of AS. I found that really interesting, the whole study, as I read through it, and I hope you'll take the time to read it is, you know, five years ago, they were looking in many years past, but this study was looking at how might we treat men and women that get this disease? We already know that there could be some differences in the way the disease presents itself between men and women, we do know that those differences that the way the disease presents itself may result in women being taking a lot much longer time to be treated, which could then result in, as we said earlier, a much more severe case because of the delay in treatment. So I really think it's interesting that we have this disease here and it gives us all the some of the same characteristics, some of the same problems, but can present itself in so many different ways that they're even now looking at, is there a way to treat men versus women so that both sexes get the proper treatments? It's not who's gonna get the better treatment? Who gets it worse? It's how do we look at this disease? Or do we even look at this disease based on a men versus women's situation? And then how do we treat it from there? So I just I find that very, very interesting, and I think that is a very well needed and long overdue way to determine this disease and look further into it. So finally, we know that if you have Ankylosing Spondylitis, whether you're a man or a woman get help, the sooner the better. I personally am a believer in biologics. I like them for myself. I thought they've done well. I know other people can have some quite adverse reactions to them. So talk to your doctors about what is the most appropriate way for you to treat your Ankylosing Spondylitis after diagnosis. You know, it's important to see your rheumatologist at least once a year. You're probably going to want to start off every six months but at least once a year, even if you feel that your symptoms are mild. And then lastly, we all know that there's no cure for ankylosing spondylitis, but it's the early detection that both men and women need and that can help to control how it disease progresses. By giving you the early treatment, so anyway, early treatment, early diagnosis can help alleviate pain and prevent the disease progression of both men and women. So, well, there are some interesting studies done to say, you know, how do we treat the different sexes Overall, we all tend to get the same symptoms, get treated, get documented, if it gets to a situation where you're looking to apply for disability, at least here in the States. I don't know how it works in other countries, but at least here in the States, that documentation is going to be critical. Did you get in there? Did you do everything the doctor said? Did you continue to show worsening symptoms to the point where the disability becomes needed. So you control that by making sure you stay in and visiting the doctor and making sure that you discuss with him or her how that disease is progressing in you. So, again, I can't thank you all. Enough for hanging out with me. It's great to have you guys here and interact with you online. And I look forward to many more episodes of talking with everybody. Take care and have a wonderful day.https://www.healthline.com/health/ankylosing-spondylitis-men-and-women#1https://onlinelibrary.wiley.com/doi/full/10.1002/art.39464https://www.healthline.com/health/ankylosing-spondylitis-fatiguehttps://spondypodcast.com/shop.html Here you can access the links for Joy Organics. We do earn a small commission from anything purchased via the links. This does not affect the price of any items.
In this episode, I present a brief history of Ankylosing Spondylitis.  But first, the Question of the Week; on one of the Facebook Forums, I saw a question related to leg neuropathy from hip surgery. Getting leg neuropathy from a hip replacement is a known issue that you can encounter. While both the Orthopedic Surgeon and the Anastesealogist are working on you during a surgery, your nerves can be damaged in a number of ways.  Here is an article that discusses it https://online.boneandjoint.org.uk/doi/pdf/10.1302/0301-620x.99b1.bjj-2016-0430.r1In the above article, it describes Nerve Palsy after total hip arthroplasty. This is the condition that I had and it ended up causing damage to the Sciatic and Femoral nerve resulting in drop foot and no feeling from the knee down in my left leg. It is a very good read and something you should discuss with your surgeon before a procedure.In dealing with the history of Ankylosing Spondylitis, it’s probably easiest to lay out the past as follows (thank you to MedicalMarijuana.com).History of AnkylosisAnkylosis has a long history, which includes these events:·       Early in the second century CE, the physician Galen distinguished it from rheumatoid arthritis. (Galen, Commodus)·       In a 5,000-year-old Egyptian mummy, people who examined the remains found skeletal evidence of “bamboo spine,” or a total fusion of the vertebrae.·       In 1559, surgeon and anatomist Realdo Colombo described what may have been the condition. (Realdo Colmbo)·       In 1691, Bernard Conner published the first account of skeletal pathologic changes linked with ankylosing spondylitis. (Bernard Conner)·       In 1818, Benjamin Brodie became the first doctor to document an individual thought to have ankylosis along with iritis. (<a href="https://en.wikipedia.org/wiki/Sir_Benjamin_Collins_Brodie,_1st_Baronet"...
In this episode, I speak with Riley Cook about her Ankylosing Spondylitis and her service dog Gatsby and the various ways he helps her on a day to day basis.. Riley has been dealing with AS for about 10 years. A few years ago she decided she needed a service dog and took on the task of training Gatsby herself to perform the needed tasks. Gatsby can help Riley with a number of daily tasks like helping to steady Riley when walking, bracing for Riley when Riley needs to stand up, picking up items from the floor, pulling Riley’s wheelchair and so much more.You can connect with Riley at her Instagram page (instagram.com/gatsbygoldenservicedog). Riley also has an apparel company called Aware with a Flare (awarewithflare.com). Riley mentioned the following service dog organizations:Palmetto Animal Assisted Life Services - https://paals.orgCanine Companions for Independence - https://www.cci.orgThere are numerous organizations that are available to try and assist people with getting a service dog. Here are some additional services/resources:Americans with Disabilities Act FAQ - https://www.ada.gov/regs2010/service_animal_qa.htmlPaws with a Cause - https://www.pawswithacause.orgHere is a link to an article from Ageless Paws discussing a service dog for dealing with pain management - https://agelesspaws.com/need-service-dog-pain-management/Finally, here is a link to the International Association of Assistance Dog Partners - https://www.iaadp.org
In this episode, I interview Ricky White, author and current President of Walk AS One. Ricky (www.rickywhite.net) was diagnosed in 2010 with Ankylosing Spondylitis and it would lead him on a whole new journey. He was a nurse at the time and AS left him at times unable to easily perform the physical side of nursing. Through the years, Ricky transformed to a stay-at-home dad while his wife went to work when they moved to the United States. He was doing a blog (www.endlesstrax.com) that was popular in the AS community. He no longer posts to it, but the works are still there to read.   If being a stay at home father and getting  back into karate wasn’t enough,  Ricky started helping to found the 501c3 charity  Walk AS One (www.walkasone.org). The group wants to see everyone with AS keep moving to fight the affects of AS that can happen with a lack of exercise/movement. In May of each year for AS Awareness Month, there is the event Walk Your AS Off (www.walkyourasoff.com).   Ricky has written both fiction and a non-fiction book. The non-fiction is a great book to help you be your own advocate for dealing with your doctors. The book is called Taking Charge: Making Your Healthcare Appointments Work for You (http://mybook.to/taking-charge) that is available from Amazon. As both a nurse and patient, Ricky’s book can help you structure your appointments so that you can work to get your questions answered and become your best advocate for treatment.   The Ankylosing Spondylitis Podcast shirts are now available for order. Follow this link lakeshoregraphics.net/fundraisers   I am collecting orders till end of February (2019) and then shirts will be created and mailed.   Also, the Patreon page is up, follow this link: www.patreon.com/aspodcast
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Podcast Details

Started
Dec 5th, 2018
Latest Episode
Mar 29th, 2020
Release Period
Weekly
No. of Episodes
43
Avg. Episode Length
21 minutes
Explicit
No

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