google-site-verification: google39d92523271df308.html The Ankylosing Spondylitis Podcast

The Ankylosing Spondylitis Podcast

Episode 33

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Published on:

19th Jan 2020

1:45pm

Episode 033: Basics on CBD Oil

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Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Wow, am I excited to be here today! It is really amazing as I looked at the stats the other day.  I want to welcome people coming in from all over the world. We've had listeners pop up from Portugal from Costa Rica, from Guatemala, from Ecuador! Add that into, you know, Morocco, Algeria, England, Canada, the United States, South Korea, India, Pakistan, Switzerland and Turkey. You know, they're just coming in from everywhere. I'm so excited to see this. So excited to connect with everybody that's got ankylosing spondylitis, and bring everybody together to at least enjoy the show and know that they're not alone. 

On this week's episode, we're going to be talking about CBD, whether it be CBD oil, gummies, cream, or vaping, I'm going to bring the little bit of knowledge that I have, and hopefully, get some more experts in here later on during the year that can talk far more in-depth about CBD and how to use it to the best of everybody's advantage. 


Remember, I am not a doctor. These are entirely my opinions and not to be taken as medical advice. So please, if you have any questions about the use of CBD oil for yourself, consult your family physician, your rheumatologist, whoever you see, to talk about what you should and shouldn't be doing with it. 


So what is CBD(cannabidiol)? Well, CBD is a compound derived from hemp. Yes, it can be derived from marijuana but we're going to be talking about the type derived from hemp. It can help soothe joint pain. And you know, it's been talked about for anxiety and a whole number of other things as well but we're gonna be looking at mostly joint pain for the use of CBD oil and in this particular episode, so it's always referred to as CBD for short. It stands for cannabidiol, also known as CBD, and many people will rave about it for its health benefits and potential medical benefits. There have been some studies done on it and shown that it may help with anxiety. There are some other childhood diseases and seizures that they're looking at, like with children, post traumatic stress disorder. So those are whole different topics. But again, there are a number of areas being looked at to use CBD oil. So you might be wondering how does it help people with Ankylosing Spondylitis, or in this case, even just arthritis and they're still trying to link all the different pieces together as to what it can do. But there's a lot of anecdotal reports from patients and some basic research that showing that it may help in a lot of areas that people talk about it. Now not everybody's going to react to it. You may have tried it and not had any reaction to it. I've been on it for probably 30 days now. You know, honestly, I can't tell you that it's made a difference or not made a difference. Maybe I'm calmer now so maybe it's helped with some anxiety. Pain wise, I haven't noticed a whole lot but I think it's really been more anxiety for me. 


CBD is a chemical that's derived from hemp. Both hemp and marijuana are both types of the cannabis plants. But obviously as you know they're very different from each other with marijuana containing THC tetrahydrocannabinol and hemp well it does have some THC it's generally .3% or less so it's not enough to get your high off of or anything of that nature. But you know, obviously hemp and marijuana are very different from each other in the amount of obviously THC as well as the CBD percentages. But again, that's all changing because as these different folks grow the marijuana plants and get better at the cultivating of them. They're able to raise that CBD levels much, much higher in the plants than what it was, you know from nature did. 


By altering cannabinoids, you can inhibit or excite the release of neurotransmitters, which are brain chemicals. They play a role in modulating the body's natural inflammatory response, which are two things we're really looking at and want to have done with arthritis or in this case, ankylosing spondylitis. At this point, they're thinking that CBD works on pain in two parts of the body, at the site of soreness, so it could be a hip joint, finger joint, neck, shoulder, or anything like that and that it also works on your central nervous system, which, as we all know, sends pain signals to our brain. So if it can relax the central nervous system than it might relax any nerve pain that you're feeling. So those are kind of two areas they're looking at and the ability for CBD to calm the central nervous system is one of the reasons that it's being researched quite a bit for all of the Arthritis types, if it can calm down your central nervous system, it can help to eliminate that nerve pain. The other thing that they're looking at is the anti inflammatory properties that CBD has, you know, inflammation occurs when our bodies are fighting an infection or even in the case of autoimmune diseases, a perceived infection. So in an autoimmune disease such as Ankylosing Spondylitis, or Rheumatoid Arthritis, the immune system is attacking healthy parts of your body, your hip joints, sacroiliac joints, you know, neck wherever. The research is still early in this and they're looking at what they're finding in animals is promising for CBD oil and, and the potential outcomes of what we'll see. So I think there's still a lot of to be determined with CBD oil. 


There are a lot of different brands on the market and at this point, I'm not going to tell you which one is the best one to take. I think there's the one that helps you. So how do you find the right CBD product for you? Well, you know, you can go to a pharmacy grocery store, there's places to order online. I've even seen a video store that sells CBD oil. So it's not for lack of opportunity to purchase it. It's what's going to be best for you. 


So there's really four ways that you can use CBD oil. And the four common ways: 

1.    Edibles, you know you eat a cookie or gummies or drink a soda any type that's been infused with CBD oil. 

2.    You can Vaporize it. You can inhale it through a vape pen. heats up the CBD oil, 

3.    There's Sublingual Drops, you know, you take the drops and you put them under your tongue, give it a few minutes, and it absorbs directly into your bloodstream really fast doing it that way. 

4.    And then there's Topicals. The topicals can be just a cream that's infused with CBD oil that you rub on your hands, your knees, your hips, wherever. 


So with that, having four different ways. There are different rates at which the body will take the product in, and how long you might expect to see it before it starts to kick in to help you relax or potentially relieve some pain. On average, these are real just averages: 

Edibles 30 minutes to two hours. If you vaporize it, a couple minutes. If you do this sublingual drops, you know under your tongue 15 to 30 minutes and topicals on average about 10 minutes. So now that you know how to take it, and how long you might expect Wait before some type of results happen. 


How do you find the right CBD oil like I said, it's everywhere being sold by everybody. First it's not cheap. Don't buy the cheapest CBD oil because it might not be exactly what you're looking for. By the same means you don't have to buy the most expensive either look for CBD oil that's made in the United States. Look for CBD oil that has a carbon dioxide based extraction method and if you can look forward to see organically grown hemp. That way it doesn't contain any chemicals or resin residual items from you know bug sprays and things like that if it wasn't cleaned properly. And lastly, when you look on the back, look first few ingredients as possible. There's also a Consumer Reports article that has a whole guide do shopping for CBD oil, then pick the right dose. You know, this is where it's really kind of different. jury's still out on what to do. 


So you might want to start with a low dose, you know, such as 5 to 10 milligrams, and gradually work your way up over the number of weeks to higher dose, if needed, people can find relief in the 20 to 35 milligrams of CBD daily. But that doesn't mean you will, you might do less, you might do more. Things like body weight, all that can potentially come into play. So again, you really kind of have to play around but start off with 5 to 10 and try to work yourself up to 20 or 30. After a few weeks, you can take the full dose at once or break it up throughout the day, maybe 35 milligrams or 20 milligrams. You want to take five milligrams four times a day. I mean, there's a number of ways you can do it. You don't have to take it all at once. Lastly, how do I discuss this a doctor? Well, your doctor whether it is your family physician, or your Rheumatologist has most likely heard of CBD oil may be taking CBD oil and should have some general guidelines for you to follow. They will most importantly, let you know if it'll interact with any of your current medications. That's the big thing, it possibility that you might bleed a little bit more if you're on it. So if your on a blood thinner, you may want to be careful with it. If you're going to have surgery, you definitely want to stop taking it before the surgery and let your doctor know that you've been taking it and what the last day was that you're taking it. And then also keep in mind, the doctor you're talking to here, she might be relatively new to understanding CBD oil and its potential benefits. So they may have limited knowledge and not able to answer all your questions. It doesn't make them a bad doctor. It just means that they're still not up to date on some of these alternative items. And as such, they may use you as a guinea pig. And what I mean by that is, they may be excited to hear what your experiences with CBD oil and what your thought processes on taking and adding to your medication regime. 


So overall, go ahead, look for the CBD oil that is fewest ingredients. Take it the way you like whether it be gummies vaping edibles or drops under your tongue and start off with low doses and work your way up from there, you'll be able to find the item that works best for you. And hopefully, find some relief and see how it works for you. I wish everybody a great day. And I hope to hear success stories from this and bring you more information very much more in duration actually on in depth on CBD oil in the future. So take care and have a great day.


https://creakyjoints.org/alternative-medicine/how-to-take-cbd-for-arthritis/

Episode 32

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Published on:

12th Jan 2020

1:45pm

Episode 032: 20 Ways To Cope with Fatigue

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Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I want to welcome you to another episode where we're going to talk about something that affects all of us to various degrees, fatigue.

What is fatigue and how to potentially fight it? So how do you know if you're dealing with fatigue or if you just plain tired? Well, as I was searching around, I saw this great article from a website called creakyjoints.com and as I read through it, it made me think of some things that I've seen posted on the various Facebook forums. Everybody talked about this fatigue kind of had to stop and think was that person maybe tired or is it fatigue? What brings about fatigue? And one person even said, you know, “Fatigue is just like it's taking all of my energy” and so I thought that was kind of interesting. 


In reading this article, it talked about what is fatigue versus being tired. Fatigue is a symptom you need to pay attention to because there's a red flag for so many underlying diseases. It's often the driving symptom that leads patients to come in and eventually get diagnosed, says Ellie Cohen rheumatologist in New Jersey. Medically speaking. You know, fatigue is characterized by feeling of weakness and chronic lack of energy. I can certainly relate to this. A number of years ago, I had moved and I had boxes to unpack in my new home and just the thought of, you know, when I got home from work, sit on the couch for a minute to collect my thoughts and just the thought of trying to unpack a box, exhausted me before I even lifted a hand to do anything. I'd fall asleep right there sitting on the couch. Yeah, I had worked eight, nine hours that day. But my job wasn't that taxing. So I was a little concerned. I couldn't figure it out. Talked to my doctor. For me. It became an issue with testosterone. Mine was extremely low. And when you top that low testosterone off with taking about 3600 milligrams of gabapentin a day. I just couldn't function properly. So we adjusted and I went on an injectable testosterone, I switched up some of my medications and how I took them and that helped immensely. But for all of us it's going to be different is either going to be medication, disease, or some combination of the two. So there's really like five questions you can think about when you're looking at is it tiredness or fatigue and those are :



1.    Do you wake up tired even after a full night's sleep? 

2.    Do you find it difficult to muster energy for activities you enjoy or you know are normally excited about? 

3.    Do you skip important daily activities? You know, like showering or do you take a day off work because you're just too exhausted to even think about them 

4.    Do you sleep, you know more than seven, eight hours at a night and still wake up tired. 

5.    has the exhausted lasted you more than a week. 



If those are how your feeling and any given day, you know what you really want to talk to your doctor about that because it's probably fatigue and not just simply, you know, you need a couple extra hours of sleep, because even extra sleep isn't going to help you pull out of that fatigue. So, when we look at this, we say, well, what can cause fatigue and chronic illness? 


Number one is pain. You know, if I'm in pain, and my body has to continuously process how to deal with that pain, then there really isn't a lot of energy for other things. So having to then take energy off to think about cooking or communicating with other people or any of that just is something that can't even mentally comprehend, or even want to deal with and what can cause the pain is inflammation. If you're having a lot of inflammation, even a flare that can really, like I said, jumpstart the pain, which can then jumpstart the fatigue. So if you're dealing with chronic inflammation from AS, it's not under control, you're probably going to experience more pain and hence more fatigue. So again, they kind of build off of each other. And if you can get that inflammation under control, you may lessen that pain and thereby have less fatigue to deal with. You may have multiple health problems on top of as you could have fibro, or any other number of different conditions, autoimmune diseases that could, you know, one you layer those on top of each other, it's just going to be too much for the body and want to put the body into kind of a shutdown mode deal with the fatigue, the pain, the inflammation. 


So, again, these items are all items that you're going to want to really talk to your doctor about. And then lastly, we all know medication side effects can lead to potentially increased fatigue. You know, biologics can cause fatigue. One of the main things that we used to treat as being biologics and can turn around and cause more fatigue, which we thought we were getting rid of by taking the biologics to reduce the inflammation to reduce the pain to fix the fatigue, so it can be a vicious circle. Again, I'm not a doctor, this is not medical advice. I'm not telling you not to take your biologic or to look for a different one. But these are all things that you want to be able to comfortably talk to your doctor about. 


So how do we really cope with this fatigue that we all experience? Well, I'm going to go through these next 20 items, and they're kind of broken down into sections based upon each particular topic. 


So change your medication regime: 


Number One, consider injections instead of pills. You know, the same drug, doctor may tell you that if you take it in a pill form versus an injection form, it may cause extra fatigue or additional fatigue that you wouldn't experience with an injection medication. It might not be available as injection like Gabapentin wasn't, but there are some that there may be that option for you. In this article, Dr. Cohen mentions Methotrexate; she says that with the pills, you may have to take more of the medication to get a therapeutic dose, because it has to pass through your gastrointestinal tract. Whereas if you take an inner muscular injection, you can also use less medication as it goes directly to your bloodstream. I'll have a link to those common questions about methotrexate in the show notes. And you can look that up and talk to your doctor about any medications you're taking if injections are an option.

 

Number Two, schedule injections for weekends. If you have biologic that you take that you experience fatigue from it, if you can schedule it for a Friday or a Saturday, that gives you two to three days to try and recuperate from it. So that's certainly something that you want to talk to your doctor About see if they can set you up for a Friday or even Saturday dosage of your medication.


Number Three, split up doses. You know, another potential way to handle the medication related fatigue is to actually split your doses and takes them at different times in the day. I do that with my Gabapentin. Now, instead of taking just a big dose all at once the beginning of the day, I take some in the morning and some of the evening and I experienced less of the brain fog and issues with that.


Number Four; ask about timing medication around morning versus evening. In some cases, your medication if it's known to cause any type of fatigue or tiredness, talk to your doctor about whether you could take that medication in the evening right before you go to bed. If you're having trouble sleeping that might help with some of that and you get the benefit of it. So, again, talk to your doctor about that. Your pharmacist can tell you which medications cause any type of fatigue or tiredness and then you can write that down and take that and discuss it with your doctor. 


Next, under protect your mental health:


Number Five, you know, see a psychologist or therapist, you know if you're feeling that the fatigue is causing additional issues in your life, whether it be depression or anything where you think talking to a third party might help, go for it! With a psychiatrist, you may be prescribed additional medication, while with a therapist, probably not, unless they lead you back to talk to something to your doctor about. But either one of those there's no shame in going out and talking to somebody about dealing with your mental health issues if they're present. 


Number Six, use the Spoon Theory when talking to loved ones. Now I have to admit that this was new to me and you know, so I started looking at basic premises that you have a spoonful of energy available for each task need to get done each day. Every time you do something you move a spoon. People with chronic illness start each day with fewer smaller spoons than healthy people and everyday tasks require more spoons when you have a chronic illness than when you don't. So you can run out of spoons much faster than a healthy person, i.e., your energy much more quickly than those around you. So if you have a spouse, family member, whoever that is more of a visual thinker, that Spoon Theory might help. 

Number Seven, don't overdo it on the good days. This is one that gets me a lot. On the days when our illnesses are bad we all know to kind of take it easy and gentle and hope for the next good day down the road. But on those days when we feel good, those days when we feel quote unquote healthy. Those are the days when we go at it as hard as anybody with a chronic illness can we try to power through everything we do things like we remember it before AS. Push, push, push, push, push, and what happens? We go to bed and that next morning, we wake up and feel like we've been run over by a tank. And that can last 1,2,3,5 days, however many it is, but it's overdoing it on those good days, that really gets me. I know I've read from some of the other ones that other folks that get you as well. 


Number Eight, know your limits and be firm with others about what your limits are. That can come down to if your family members asked you to help with moving something, you might not be able to do that anymore. So if you have lupus or AS or any type of chronic illness and folks are asked you to come out after work, come out on the weekends, go go go. You might be able to do one of those items and not be in so much pain the next few days that it makes sense, but you have to know what that limit is and you have to stick to it and then once you stick to it, you have to be firm with your friends. If they start to give you, you know, friends or family if they start to give you a hard time about why you're not participating, why you're not coming along whatever it is, if to be very protective of your health. 


Consider supplements;

 

Number Nine, try CBD. I see a lot of questions on that and we may have to do some whole episodes just on CBD. Some people have great relief from it, some have okay experiences, and some have none. I really think it's a function of the product you're taking and how consistently you're taking it. One particular person said, “Honestly, CBD has made the biggest difference in treating my fibromyalgia, more than any prescription meds I've tried. I'm still tired, but I feel less of that crushing exhaustion.” So that's a great response to CBD. But again, not everybody has that. So make sure to read the labels and try it. See what happens. Take it for a couple weeks, three weeks, four weeks, whatever you want. Try a whole bottle and after that's done, if you don't have any type of really good response to it, you can stop.

 

Number 10, Take probiotics. This is one that I'm still a little torn on. I know that there's a lot of research that looks at the gut health in relation to how we've all developed AS. If you take probiotics, does that help your gut biome? Possibly? Are you taking the right one? Are you taking one that's got a bunch of sugar and fillers in it that really isn't helping you? I don't know. There's so many of them that you really got to watch what you're taking. And then maybe instead of taking a probiotic pill, you just eat things like yogurt, sauerkraut, Kimchi, or Kiefer. Try any of those that are available many grocery stores and see you might have better results with that than actually taking a probiotic pill. 


Number 11. Boost your vitamin D intake. This is something that I've looked at I'm actually having my vitamin D intake increased, and I have had it done for, oh gosh, six, seven years. I'm on 50,000 iu’s once a week. So that is to help get my vitamin D levels up. You want to talk to your doctor, he or she is going to be able to tell you, yeah, vitamin D supplement could be good for you or will do a prescription strength vitamin D to really get you a large dose of it. Again, talk to your doctor, he or she's going to be the one to tell you what's the best avenue for you to approach that. 


Number 12. Try Melatonin. Again. Melatonin is a hormone that helps regulate sleep/wake cycles. There's some research that suggests Melatonin supplements can help with insomnia, and other sleep issues. So you can try it. Talk to your doctor about it before you decide to go down that route. Just to make sure it doesn't affect anything of the other medications you might be on. But again, it's available over the counter at both drugstores so you can easily pick up a bottle of Melatonin and try it out after discussion with your doctor. 


Live a healthy lifestyle:


Number 13, Exercise every day. This is a hard one, this goes back really to the don't overdo it on the days you feel good. Exercise is really tricky for those of us that have pain and fatigue. I have my days when I want to exercise my days when I don't want to exercise and I know on some of those days when I don't want to exercise. I don't. It could be pain, stiffness, soreness, whatever. But then there's other days when I feel pretty good and I decide to go out and I just have to make sure I don't overdo it at the gym. You want to make sure that you don't overdo it to like create any additional joint pain so that you're not stuck on the couch for a few days like an excess pain, but there is a benefit to exercise for people with as the movement you do helps to keep the mobility in your body and your joints. So I'd encourage you to do as much or as little exercise every day as you can. 


Number 14, Practice good sleep hygiene. If you're not sleeping well, it's going to mean you're probably feeling some fatigue. So like all of us with autoimmune or inflammatory diseases have to work even harder to get good rest. So make sure the quality of sleep is a top priority. You know, there are articles and articles and articles written on sleep studies, but some of the things you can do remove the TV from your bedroom, remove your electronics from your bedroom as far as phones, anything that could be buzzing might wake you up. And then if you snore, like I did, get a sleep study done, and you may need a CPAP machine. I know on the nights that I don't wear my CPAP machine or don't wear it long enough. I wake up feeling like I had a terrible night's sleep tossed turned and when I can keep it on for most if not all the night, then I feel really well when I wake up the next morning.


Number 15, Keep a blanket and pillow in your office. Well, I don't work outside the home anymore. I do this podcast now, so I’ve got a pillow and blanket right downstairs on my bed. You, depending on your boss may or may not be able to bring a pillow into work. That's one of those that if you have a very liberal office where you've got just great employee benefit options, you may have areas where you can take a nap. If you don't, you know, you're just going to kind of have to deal with that as you can. 


Number 16, ditch the soda. Soda has been the killer for me I am having a virtually impossible time giving it up. I know it's a mind over matter. But my mind sure is not getting over on this matter. And caffeine may pop you up in the short term, but it can contribute to chronic fatigue in the long run. Artificial sweeteners and diet drinks may disrupt the balance of your gut bacteria as well and play a role in fatigue. It's best to stick to filtered water herbal teas and other natural drinks, you know, if you're thirsty, if you need a little sweetness, maybe add a little bit of honey into some water or tea. It's some benefits from eating honey as well. So that's one that I'm just I'm still trying to fight that battle on that. 


Number 17, ask about flexible work arrangements. Some jobs, they may allow you to work three, four hours in the morning, three, four hours in the afternoon with a two three hour break in between. That's not really common, but they may be out there. So see if you can come up with any type of flexible work arrangement with your boss, they may or may not be open to it, but it never hurts to ask. 


Number 18 eat an anti inflammatory diet. You know, inflammation is the underlying problem of as that is the issue that we deal with is the inflammation the damage that it causes, along with many types of arthritis. You can help to control that inflammation by what you eat. If you can reduce or eliminate processed foods, sugary sweets, salty snacks, fast food, you know all that stuff that tastes good, but it's terrible for you. Eat more fruits, vegetables, beans, clean proteins, read more about the anti inflammatory food nutritionist wants you to eat, they'll be a link in the show notes to that.


Number 19 take advantage of shopping technology. These days there are many things you don't have to leave your house for now. It's going to be dependent upon area. I live in a very small town where the closest real grocery stores 20 miles away, so there is no delivery service. But there is curbside pickup if I don't want to go into the store. Yes, I'm going to pay a fee for that, but I can order my groceries and pick them up at the curbside so that I don't have to go and actually wander through the store. When I lived in San Antonio. It was fantastic because you could actually even have your groceries delivered Buy some of the major chains there. So that really could keep your house bound if you are so inclined. So take advantage of that. Even some local, you know areas where you live, some smaller markets may do delivery if you're in a larger city, and you don't want to shop at some of the larger chain stores, but you'd rather shop local markets, they may have delivery service. And finally, 


Number 20, take breaks from your phone. What I mean by that, well, technology can be a catch 22 when it comes to resting. You know if you're watching Netflix or you're playing a game on your phone or surfing the web might feel like a good way to wind down but it's not really rest and depending on what you're looking at, you may get even more anxious. So take a break from your phone, set it down, especially at night when you go to bed. It's been reviewed and research that the blue light emitted from phones, tablets and laptop screens can mess with your sleep, which is why I said to leave a lot of the bedroom. Usually about a Good hour, so half an hour before bed, eliminate that stuff so that your brain can actually start to really settle down. 


Overall, those are 20 items...

Episode 31

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Published on:

5th Jan 2020

2:00pm

Episode 031: 9 Resources for Ankylosing Spondylitis Support

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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.com


Thank you and have a great day.


https://www.healthline.com/health/ankylosing-spondylitis/resources-for-support

Episode 30

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Published on:

29th Dec 2019

1:00pm

Episode 030: Finding Support and Talking About Ankylosing Spondylitis

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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, Bye


https://www.healthline.com/health/ankylosing-spondylitis/living-better/finding-support#1

Episode 29

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Published on:

22nd Dec 2019

2:00pm

Episode 029: Pet Peeves Heard About Ankylosing Spondylitis

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Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's going to sound like a broken record, but I just can't thank all of you listeners enough. It's been incredible the numbers that I keep seeing on the show, we've now been downloaded in 58 different countries. To me, that's amazing. When I went about making the show, it was going to be only in English. And I didn't really know what kind of reach the show would have. But 58 countries is amazing, we've literally circled the globe. It's great to see everybody that is enjoying the show, and finding some type of comfort from it, entertainment value, whatever, and then turn around and contacting me and saying how you like the show. So it’s been fantastic and it's been really interesting. The downloads coming out of Switzerland have been huge. So whoever's in Switzerland enjoying the show, I hope you just keep enjoying. I'll just keep making the shows for everybody around the world. But it's neat to see these downloads come from different countries.

With that, I want to go to the Question of the Week. This question was brought about kind of by video I just watched where a young lady recently diagnosed with Ankylosing Spondylitis was very upset just with the overall you know, everything of dealing with being diagnosed with Ankylosing Spondylitis. That video kind of broke my heart. As many know I was diagnosed a long time ago and my remembrance of being diagnosed is non-existent. I just have Ankylosing Spondylitis just is what it is. It's been part of my life for 35+ years. So when I see somebody that's recently diagnosed or read about it, it kind of breaks my heart as they go through all the stages of understanding and dealing with what a diagnosis means. 


With that said, I wanted to point out a website that many of you may be familiar with. If you're not, this might be of help. There's a website called ankylosingspondylitis.net. What I like about that website is all the resources   available. There's a community section about it a basics, Types of Spondyloarthritis, Signs and Symptoms, Being Diagnosed, Treatment, Living with AS, Mental Health, and then some special sections. And there's just a ton of articles out there that are about Ankylosing Spondylitis. I think there are a lot of good things that we can all take away from it. As far as being diagnosed if you're new to this treatment options, again, if you're looking for different ways to help yourself feel better, and I'll have a link in the show notes to ankylosingspondylitis.net. I think it's a great website. I encourage you to go check it out. Look around, you can make a profile and then if you want to tell your story, you can. You can share your story with others, so that it just becomes a more robust community and you get feedback to help you give feedback to help others. It's really I think, just a neat website and a neat resource for all of us to utilize 


This week's episode was started by a posting online that I was participating in. We were all kind of having some fun with it. You know, there are all sorts of things that people will tell you to do, generally well meaning and they'll come up to you and say, Well, I know your back is hurting. So try this or you know, go swimming or whatever they tell you. Everybody started a thread based on the pet peeves that they heard, and I pulled out about 23 of them and they kind of make you chuckle. So really, take this episode with some levity, enjoy it and just know that most of the time these people are not meaning anything negative. And just sometimes you’ve got to kind of roll your eyes and say, “Yea, thanks. I never thought of that before.” and move on. Be as snarky as you want or be as nice as you want. Whichever works best for you. These 23 different pet peeves are kind of boiled down of what I saw posted online. So here they go. 


Number oneHope you feel better soon, Don't we all? You know, they don't quite understand that this disease we never really feel better. We just have better days than worst days. You know, again most people don't say that to be mean. It just is what it is. 


Number two, which falls under unsolicited medical advice, Try a coffee enema, it will remove the impurities in your body that are causing AS. That one wasn't said to me, but if somebody said that to me, I might be like, “what are you nuts?” I'm not really even sure where to go with that one. So, you know, do with it as you choose. 


Number threeYou should go lay down or sit down and rest. Well, yes, thank you. I'm probably going to do that at some point or multiple points throughout the day. I might not want to do that. I might want to try and keep up with everybody else. But my body won't allow it. And so thank you kind of Captain Obvious. 


Number four, one uppers. I have arthritis in his finger and it hurts when I do this, whatever this is you and they don't understand that the wave as strikes, it can be through the whole body. It can be certain spots of the body, whatever. But it's not just as simple as a maybe having a little soreness and a hand or a finger when a storm is coming. It's a whole different ballgame. 


Number fiveYou should work out more or stretch. Really, again, thank you. I know I should work out. I'm not sure if you're telling me I'm fat, or you're just telling me that I should feel that way to try and be helpful. But there's days when I always my mind always wants to say you need to go work out you need to stretch you need to do this. But physically, there are just some days I can't do it. And I'm sure many of you experienced that as well all the time. 


Number sixYou're too young to have arthritis. I got this all the time, especially being diagnosed at age 14. I was always told you just being lazy. You. You don't want to go out and do stuff because you're just lazy. You're too young to have this. You're too young to do this. Well, thank you for being the doctor and telling me what I can and can't do. But yes, I do have a autoimmune disease, it's never going to get better Matter of fact, it will get worse. But, you know, that's just one of them.


Number sevenIt will get better. Well, you don't really know that. I don't know that when I you know, if I went back to myself in my 20s when I was having my major flares and my fusing through my 20s and my 30s if somebody would have told me it was going to get better, I would have been like you're nuts. But back then also, there was no biologics to help control it. Now in my late 40s, almost 50 as the as has kind of fused everything, the pain is changed and it has gotten better I don't get the flares like I used to I don't near get the harsh pain like I used to. It's a different kind of pain now. But I'm also on biologic that helps and some other pain meds that that really do the trick. So for all of us, it's really just a game of trying to find that medicine cocktail that helps us out the best. 


Number eightHave you tried cutting out gluten? Again? Maybe well meaning gluten can certainly affect a lot of things. And it can affect those of us with as. So it's well meaning but it's just one of those items that gets thrown at you just willy-nilly by everybody. 


Number nine, when someone starts a sentence to you, with, At least at least you…, you know, you can still do this or at least you can still do that. Yeah, at least I can still get up in the morning at least I can still move on. Yes, those are all true. There's always somebody that's possibly worse off than me. I don't want to minimize anybody else's situation, or make them feel bad because they're having a bad day or a flare. So I can always look at that one and just say yeah, and move on. 


Number 10But you don't look like there's anything wrong. Well, I'm Not sure how you're supposed to look. In my case, I'm hunched over I walk with a cane. I'm 49 and I, I walk like I'm about 99 I look like there's something wrong. But there's many people that have as that have been able to keep it under better control, have gotten access to medications as they've been developed, and can still participate in a lot of different activities. So, yeah, there is no one look to how any of us should look. We're all different and affects us all differently. So we just we are who we are. 


Number 11Are you taking your meds properly? Yes, again, thank you. I am taking my meds properly. Just the taking of my meds is not going to change how I feel on any given day. There's all sorts of other outside factors that can be anything from the weather to stress to you know, doing A lot of running around and doing errands and things like that. So it's not just take my medicines feel great. It's take my medicines, and then hope all this other stuff doesn't help me not feel as great. Again, it's just something that you hear. 


Number 12, Just get some more fresh air and exercise. That was always my grandmother would say that to me when I was a young kid, you’d feel better if you just go and get some fresh air. I never held that against it because it's my grandmother. You can't hold anything against your grandmother. She's, well meaning. Nobody knew anything about Ankylosing Spondylitis in the early 80s and mid 80s. And it was just something that, you know, you took a pill and it was cured, so to speak. 


Number 13 It's all in your mind. No, it's not all in my mind. It's in my shoulders. It's in my spine. It's in my hips. It's in my feet. It's in my neck. It's anywhere but In my mind, it's not one of those things where you can you know, overcome this you're not going to go to a Tony Robbins seminar walked out cured from Ankylosing Spondylitis (no knock against Tony Robbins. You know, if you like that, that's great. Just the only example I could think of right off the top my head). So anyway, it's in more than just your mind. 


Number 14Essential oils will cure you. I'm not overly familiar with essential oils what they are, but I saw a number of people comment this particular item. And I see people bring it up on the forums. I'm not going to knock them because I don't know what they are. But, again, there is no cure for Ankylosing Spondylitis at this time. So there are no ways there are ways to control it. There are ways to put it into remission from diet exercise, medications, but there is nothing that will cure it.


Number 15You just need to lose a few pounds. Again, thanks for telling me I'm overweight. I really appreciate that. It's not like I can't tell it when I look at myself in the mirror in the morning. But I always try to look at and say, Man, I hope they're just saying that because they're trying to be helpful and not be rude. So it's one of those things where you just say, All right, thanks, and move on. 


Number 16. We all hurt. Yes, we do. I will never minimize your pain to make mine seem more extreme. We do all hurt. But we all heard differently. You’ve cut off a finger; you're going to hurt a pain way that I have no concept of because I've never cut off a finger. I have Ankylosing Spondylitis. Unless you have as you're not going to understand how I feel. So everything is relative. We all hurt. We all have our issues that we deal with. But again, I'm not going to minimize somebody else's situation. And don't minimize mine. 


Number 17, Don't stay up so late. You know, again, I haven't heard that since I was a kid, but somebody apparently heard that they were being told don't stay up so late, and you'll feel better get more sleep as where I think it was going. 


Number 18, If you don't think about your back pain, you won't feel it anymore. That kind of goes back to, it's all in your mind is much as I wish that I could just will this away. It's not going anywhere. You know, the more positive affirmations I do, it's not going to get any better. I might feel better mentally, but physically, it's not going to adjust how my spine feels on my neck feels how my shoulders feel how my hips feel, you know, you get it, you're not going to be able to positive affirmation way your way out of as, 


Number 19, It's just stress, you need to relax. Well, stress might trigger a flare and make my as worse, but it's far more than just stress and that kind of goes back to all The other things, just calming myself down. Well, it might help to ease the symptoms of a flare, maybe even take me out of a flare, or take any of us out of a flare. It's not going to fix it. It's not a function of stress as causing Ankylosing Spondylitis. 


Number 20, You've changed? Yeah, I have, depending on when you were diagnosed, there was things pre diagnosed that you might have done that you don't do now, you might not be able to meet with friends as often or as at the drop of the hat as you used to the idea of going skydiving might have appealed at one time and not appealed anymore. And whatever else you used to like to do, maybe just not even think about it just run out and do it might not be something that you're able to do so quickly now. So yeah, we have changed as changes you. 


Number 21, I didn't understand what the person wrote but they just said I can cure you, somebody walks up and says I can cure you, I got this magic been for you, you know, you spend as much as little of your time with them as you want and decide whether they're wasting your time probably are but you know, that's again, that's my opinion. You give them as much time as you want. 


Number 22Hope you get better soon. I hope I do too. Not going to happen. I might have a remission. I might not have, you know, as much pain. But again, Ankylosing Spondylitis as we all know, doesn't go anywhere. It always is there it's always lurking. And well medications can keep it a bay. We're not going to get better anytime soon. 


Number 23 ties back to the other It's mind over matter. No, it's not. So with that said, even though those were kind of fun and you can be snarky with responding to some of them and some of them are well meaning but have no real sense. What it really leads us to is we can all be the advocate for Ankylosing Spondylitis. Develop what I call an elevator speech a little 30 to 60 second item about what Ankylosing Spondylitis is. So when that person walks away, they have a maybe better understanding of what AS is. You be the tool that explains what Ankylosing Spondylitis is, as best you can, if you're willing to and help to spread awareness of Ankylosing Spondylitis. So, with that, I hope you all have a great day. I thank you for allowing me to come and talk with you. And we'll talk to you soon. And I can't wait we I think have some really cool stuff coming up for 2020, take care.

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About the Podcast

The Ankylosing Spondylitis Podcast
A podcast for people with Ankylosing Spondylitis
A podcast for people with Ankylosing Spondylitis. I am Jayson Sacco, a 34 year plus Ankylosing Spondylitis survivor. With this show, I want to bring the AS community together and talk with doctors, organizations, and individuals all dealing with AS.
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Jayson Sacco

I host two podcasts, the first is Outdoor Adventures with Jayson where I discuss hunting and fishing topics in America and around the world. The second show is The Ankylosing Spondylitis Podcast. This show deals with the autoimmune disease I've been dealing with for 35+ years.