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The Ankylosing Spondylitis Podcast - Jayson Sacco EPISODE 4, 4th January 2019
Episode 004: 29 Things About AS You Should Understand.

Episode 004: 29 Things About AS You Should Understand.

I wanted to let you know what this new episode up front I screwed up a little bit and I used the wrong microphone to record it. So when you hear this it's going to sound a little distant because I was using a microphone a little bit farther from me than my normal microphone. So I do apologize about the sound quality of this particular episode. Enjoy. 

Hello, Happy New Year and welcome to this episode of The Ankylosing Spondylitis Podcast. In this latest podcast, I want to do something a little bit different today and I was searching around on the internet and I came across from a website called healthline.com and article by Elaine Rushnell. 

No, not really an article but 29 things only someone with Ankylosing Spondylitis would understand. So I thought I would kind of review this and go through it and apply it to myself hoping that when you hear listen to it, you can take these 29 items and apply them to yourself if they've affected you, or somebody that you know, one.

Number 1 First of all; learn how to pronounce it is kind of important. I've had AS for 35 plus years, and I've said it wrong for most of that time, it is Ankylosing Spondylitis. I've said it many years for Ankylosing Spondylitis, which is wrong. It's Ankylosing Spondylitis. So I've had some feedback on that to the folks that have listened to it and heard me say it wrong. I apologize. I am trying better. It's an old habit that I'm trying to break. But it is, you know, one of the main things is first learning how to pronounce it so you can better educate anybody that's you're talking to.

Number two, and I kind of liked this one. It made me laugh, “Is learn to spell it will make you feel very smart. ‘That's the truth. Nobody could spell this correctly. I shouldn't say that, it's challenging when people that don't have it or have never heard of it see it written out. They all kind of just take a look at it, like it's a dinosaur. Something that you're writing like, you know, some major Latin sentence. What it is that and even if you go to try to put something on Instagram, you'll notice that there are two hash tags for Ankylosing Spondylitis, one of them with the L and the Y reversed. So both come up. You can use both. I do, but it is Ankylosing, and then Spondylitis, as I'm sure most of you are familiar with.

Number three; you can make 1 and 2 a whole lot easier by calling it AS. Most of us do, It's a lot easier and people don't necessarily know what AS is. But that's where you can go in and explain what 1 and 2 a whole lot easier by calling it AS. 

Number four. If you have as you could try to blame your Uncle Joe or your Aunt Mary or anybody, if they have it, it's sometimes genetic. For me. I'm like, really the second-generation family member here in the United States. My family hasn't been here that long, since the early 1900s. So we don't know anybody going back or we don't know very much about it. But from talking to folks, that doesn't appear to be anybody in the past that has it. So was I just a lucky one? Who knows? I'd rather be lucky and get a Powerball ticket. But hey, I guess got this. So you just take it and do what you can do with it. So if you have family history, diagnosis, if you had an aunt or an uncle that always had a sore back, maybe they had it if they walked hunched over, or had a sore hip all the time or got confined to a wheelchair and the family, never do Maybe it was Ankylosing Spondylitis and you can better look back at what they dealt with lack of meds or any issues they might have encountered. So for your family, if you do have it, keep track of it going forward so that anybody at the future might know what's going on.

Really also be interested has anybody done any of these genetic testing’s, 23 and me or any of them to look at any in depth of genetic information? If you've done them, I would love to hear from you. Let me know what the results were what they were like and, and maybe I'll jump out and do one and see what kind of results come back based upon any feedback I get from y'all. 

Number five, remember your grandma telling you stand up straight, do it. We all know that this is an inflammatory disease that also can result in fused parts of your body whether that be your ribcage, your spine, your hips, were in my case, all of them. I have limited Breathing, it's still good, I don't have it as bad as some people in my ribs but my ribs do have some, some restriction. My lower back is shot it is fused the lower, say third of my back. And I've had four hip replaced well, three total hip replacements and one hip revision that lasted about three weeks. So I've been affected across the gamut. And if you have questions on that, or, or want to talk, feel free to reach out via either the podcast or on Facebook and in the Ankylosing Spondylitis groups, and people will be happy to talk with you.

Number six, It's frequently misdiagnosed so ask for a specific genetic tests for it. I got very lucky, so to speak with this when I was 14 years old. After several years of chiropractic medicine and, and some therapy and just always growing pains tough and out. We finally got referred to rheumatologists, this was back in 1984, Dr. Allen Ward down in Warren, Michigan, north of Detroit and a walked in. He asked me a few questions. Get a couple just in office, you know, stretch tests. And he looked at me says you have Ankylosing Spondylitis. It was now let's prove it by doing the test. And so I've listened to many of your stories where the rheumatologist just absolutely fights you on this diagnosis and it's very sad because it was not the experience I've had. I've had great rheumatologists over the last 30 plus years in both the Detroit area. And then San Antonio, I made a major mistake when I moved to Phoenix, and I left my Ankylosing Spondylitis untreated for about a decade. And that was really a mistake on my part. The weather out there made me feel good, but there's probably a lot I could have done to avoid some of the issues I'm dealing with now. 

Number seven exercise will make you feel better remember motion is lotion. With this one, I'm going to kind of go back in it and say exercise may make you feel better. There are certain things with my hip replacements I can and can't do now. But it is true. If I get up and move around. I generally feel better. So I walk with a cane. I try to walk around my apartment, walk outside. I have a scooter. So when the weather's nice, I live in Michigan. So we're dealing with chronic weather right now. But in the summertime, I could take my scooter outside with my dog go around, get up move. I just try to move as much as I can. Which is limited compared to some of you that have Ankylosing Spondylitis have full motion can still run exercise. It does cause you some discomfort. But remember that not all of us can do that. And I see many folks that just throw a blanket statement out there. Exercise, do this do that you'll feel better. Remember, this disease affects all of us differently. So just throw in a blanket statement to go exercise that's not really a good or a fair comment. Because, again, there's limitations on what we all could do. Some of you can run marathons, do it, some of us can walk across the apartment building and we're winded. Do it, whatever the little bit as you can do it. But for the folks that are more able bodied, don't expect to see someone who's got more restrictions. Being the same level of activity and don't feel that or, or make icy comments on some of the Facebook groups where people trying to put others down because they perceive that everybody should have the same level of mobility that they do. And that goes for the limited mobility as well as the very active So anyway, that's my two cents on number seven. 

Number eight, AS will sometimes accompany other disorders - many of which are easier to say and spell. We all know that. I've got the issues with arthritis with my eyes. That's been the main one and I have very, very high blood pressure, which is probably going to cause me some more issues if I don't get it really under control. But you guys all know, I've seen people just list a bevy of diseases that they have in addition to the Ankylosing Spondylitis. And I feel for you, take care of those, manage them as best you can. And if you need to talk about it, again, go to the forums, reach out, reach out to myself, be happy to talk Listen, and provide any feedback if I have I'm a no means an expert, you know. So I would tell you, whatever I tell you, or if you're a younger person with this, just starting this journey, watch me whatever I've done do the opposite. You might fare very well with it. The new medications are fantastic.

Number nine, You can use heat or cold for relief. Take your pick. That's true. If you haven't some inflammation, you need ice down a spot on your body. It's generally going to feel fairly decent and reduce some of that pain and or swelling, as is a very hot shower that can, can temper some of that. So, again, this is personal preference might be one the other or both, just do what is best for you. And, you know, whatever brings you the most relief. 

Number ten, AS sometimes causes breathing problems. So if you're a smoker, you’ll be sorry. And what I mean by that is, sometimes the cartilage in your ribs can start to calcify or to turn into bone, I should say. And when it does that, your restrictions or your ability to take deep breaths is severely limited. Again, I have some of that but it's still for the most part checks out okay. But I've seen others that are much more restricted, where they've had their as his attack their ribs, but their hips are back might be fine. So again, we're all different. Do what your doctor says. What if you're smoking, you know, you really want to make consider stopping that.

Number 11, The posture issue is important, not only one standing, but when sleeping or sitting. Lie flat and sit up straight, always. Easier said than done. I cannot sleep on my back. So I do sleep on my side, and I have an adjustable frame bed that I occasionally use. Same with a chair, I like to recline back at times. But I can tell you this, as soon as I replied back, I'm going to sleep so that sometimes fights against me and I will substrate. The other thing I find myself doing is looking down to read, which I know is bad. I've got to come up with some situation where I can pick a book up or an iPad up closer to it level to read off of that. So that's going to be one of my next items to try and try and conquer. 

Number 12. Don't just walk. Strut or march, head high, shoulders back. Join a marching band or Fourth of July parade, and smile. Again, you know, that's kind tongue in cheek, but it is important again for the posture, make sure that you're always trying to keep your back as straight as possible. That way, when you're older 60s 70s 80s hopefully 90s you're not one of the folks, you see this walking over hunched, looking at the top of their eyes. Unfortunately, I'm in my late 40s, and that's me at this point. So I try to sit as straight as possible, even though most of the damage is done, 

Number 13, Physical Therapy is always a good thing for pain, and can be very rewarding too. That's very true. Again, you are going to have to know your body the best. If you are having a major flare, physical therapy might just be like torture. So if your doctor recommends physical therapy, do it, do what the physical therapist says. You'll most likely be happy log on and make sure that that physical therapist has some understanding of range of motion and how as can affect ribs, hips, neck so that they can work with you in the most proper way. 

Number 14, Test your range of motion every so often. Throw a ball, stretch, or walk a treadmill. I try to do this try to lay flat on the bed, I have to have one leg off. So I can lay straight but stand straight against a wall if I can, anything to try and stretch my back out the opposite way of hunched over. One thing I like to do is occasionally go to like a pull up bar, or if you're if you have a playground near you where you can have monkey bars, just put your arms up straight in the air, grab a hold of the bar, and then slowly take your weight off of your body so that you're holding by your arms to stretch out that spine to let it pull itself more back into a natural position. So remember, just keep that range of motion as strong as you can, so that it stays with you as you UH,

Number 15. Join a support group. This is sometimes the best therapy. I like the Ankylosing Spondylitis groups that are on Facebook, there's a number of them, so I'm not going to point any of them specifically. But there's a number of them, join them. Remember, everybody's different. I see people go in and say, well, what should I expect from this? What should I expect from that? The real answer generally should be I don't know. What you receive for a benefit from it might not be what I receive. But if I've experienced something with say, Humira embroil, whatever, I can put that out there, but don't try not to say this is what you will get because you don't know what they're going to get. They're going to get something completely different than you. I took. I took Humira and I took the other ones 70 or something like that, by to all three. They provided relief for two Three months, and then it was over. Some of you folks have been on for years; I finally got put on cassette decks. And as far as I'm concerned, that is a miracle medicine. For me. it's worked out phenomenal and taken away all my pain. What I tell folks is that do what your doctor says progress through the medicines that are best for you. I also see a lot of folks try to not people in the support groups. If you go to any of these biologics, yes, there are some side affects I some bad. I tried actually many cases I try not to read them, which I know sounds ridiculous, but with the side effects, I looked at it as I'd rather have quality of life than quantity of life. I've got this disease. It affects me it's already affected me it's already ruined a lot of things my body can do. So if I can find a medicine that provides me relief, I'm going to take it not going to worry about the side effects. I don't want to live in pain. I'd rather live a short good life than a long miserable life. Again, that's just me. If you want to avoid them, go for it. I can't tell you to not do that. 

Number 16. NSAIDs can help with pain relief, and new medicines are being approved every day. As we said, there is Cosentyx, there's Enbrel, there's Humira, and the list goes on and on. Work with your doctor to determine what's going to be best for you. Ask questions of support groups that are fine, but work with your doctor. If somebody is in these support groups telling you don't do it, don't do it. Don't do it. I can't say to ignore it. But have that conversation with your doctor. Not with everybody to support group Doctor is going to know your whole medical history or should know most of your medical history and be able to better talk you through any of your concerns. 

Number 17 If you suspect it's more than a pulled muscle, follow your instincts. Get help.Again, this goes back to knowing your body. When you feel something coming on when you feel an issue a problem. You know, if you all have pulled muscles, we know that those heal in a couple days, but if that pulled muscle is still there, 456 days later, might be something different might be something that you want to check out with your family physician if you don't have a diagnosis for as if you do have a diagnosis for AS and you have encountered long lasting items again, go to your rheumatologist, go to your general practitioner, hopefully they work hand in hand or at least know each other and are comfortable with trading information back and forth. So that you get AS the patient get the best care. And again, if you're in the San Antonio, Texas area, or in the southeast Michigan area, like the Detroit area, you want a referral for a rheumatologist, contact me via Facebook, I'll be happy to provide you the names of who I dealt with in those areas. I think they're fantastic. 

Number 18 AS is an equal opportunity pain in the neck. It can occur in children, teens, and adults. I can remember I was diagnosed I said as 14, but I didn't go back to 910 11 years old. And remember the pain. And it was just told it's growing pains. You know, you'll grow out of it. That was the early 80s. You know, when I was diagnosed with Ankylosing Spondylitis, I didn't meet somebody else with that disease. For another 12 years, there was no internet, there was no any way to connect with folks that I was aware of. I was given this disease, no support. I mean, not My rheumatologist was great. I could talk to him all that kind of stuff. But as far as any type of support groups, I live in a small town of 1800 -1900 people. There wasn't anybody else to talk to. So mentally, that was a whole different ballgame than what you have today. We just jump on the internet boom, you've got, you know, a million people or 20,000 people or however many of these groups that you can talk to. 

Number 19, AS may change its mind, going from relapse to remission, so learn to outsmart it. This is very true. I think for a number of years when I was in Phoenix, the dry humidity, put me into a remission with it. It wasn't getting worse. But I also ignored it so I should say it wasn't getting worse. It was getting it was getting worse slower. That's not the right way to say it, but that's how I'm going to say it. It was slowly progressing verse, a fast paced issue like I think you encounter When you're in these colder wet climates like Michigan, Wisconsin, Minnesota, New York, Pennsylvania, these upper peninsula or upper Midwest states where there's a lot of humidity, lot of cold, wet damp, I think the disease progresses farther up here. I have no background to you know, there's no medical research that I'm aware of that says that that's true. That's just my own hypothesis. So, or my own feelings. Quit using those big words. So make sure whether you live in Florida, Arizona, Texas, Wisconsin, Minnesota, wherever that you're appropriately addressing your disease with the specialist so that it doesn't go beyond or where you can keep it in check better. Sorry, needed a little drink there. 

Number 20. Well Ok, maybe you can't quite outsmart it, but you can learn to deal with it.This is the big one. We all have to learn to deal with it. Once you have this. There is no key There is no, I've, I've cured myself as has gone. Know what most likely you are? Is it a remission and very happy for you. But don't stop going to the doctor. Don't stop treating it. Don't stop your meds. Continue to treat it just as if you were having the pain. Because one day and I hate to say this, but one day generally it's going to be when not if but when you get a relapse when you get a major flare. It's better to have those medications in you present and there to deal with it. Then have to start over from zero because you stopped everything and you took 235 years off from the rheumatologist. It's exactly what I did. And I paid for it. So again, do the opposite of what I did and I think you get better keep this disease in check. And again, it's a mental game. 

Number 21. The symptoms can vary from arthritis-type pain to eye problems to heel pain.I've had all three of that pain in the ribs, the spine, the hips, knees, and the heels. I was in college, and man my heels were on fire the point where I couldn't go to class, I couldn't walk beyond going downstairs to get a bite to eat, and then come back into my room. And by that time I was in so much pain, all I could do is sit there and put my feet up and had no clue what was going on. So it was very challenging. I was in a wet climate at a university called Central Michigan University. I had to walk across campus everywhere. And for two three weeks I didn't go to class I could just couldn't put weight on my feet. But the other thing I didn't go to the doctor either so I was neglecting my as and again I paid for that and I still get the yo paid the iris if you ever Thank you have paint guy get into a doctor as quick as possible and generally not a med Clegg not knocking them, but they don't have the access to the qualifications for irate us. What I found is that I got a ophthalmologist and I've called them up before I've said, Look, I have Ankylosing Spondylitis, my eyes are starting to hurt. And I'm fairly certain that this is about with Iris, I need an emergency appointment. And I'm usually in that day or the next day I understand the severity of that and busy or not, they tend to get you so make sure you know a good local ophthalmologist that you call it the drop of a hat, because I write us. First time I got it I treated as pink eye. And it got worse, worse and worse until I go to the emergency. And there was just basically sheer coincidence, there was a ophthalmologist that was there had dealt with another issue with emergency clinic. The hospital, he came in, he looked at my eye and he told me I was I may lose the eye. And I ended up having to get a shot of some type of steroids right directly into the eye. Let me tell you, you don't want that. That is not cool. So go and just make sure to have your doctors all lined up before these issues strike. 

Number 22. Know your family history- It should be part of everyone's health profile. I've tried to gather as many of my medical records digitally as I can. I have a small little USB drive that I tried to load everything onto a USB drive. It does take time to paid it's not the best but If I ever have to go somewhere, I can throw that USB drive in my pocket, hand it to a doctor, nurse rheumatologist, whoever, they can plug that in, they can see my x rays, they can see surgical records, they can see everything that I have that I've saved. It's not all of it, but it's what I have. So, again, start compiling those, whatever you've got digitally store up and I would encourage you to put them on a USB drive that is easily something you can throw in your pocket for a bad trip to the hospital. 

Number 23. Make sure someone has your back, so to speak. You need this other voice. If you're young, hopefully it's one of your parents that's, you know, backing you up and saying this isn't right. Johnny or Jane is not moving correctly, they're experiencing this pain and they can help push the doctors if you're having a hard time with the diagnosis. If you're older, hopefully it's a spouse if the spouse is giving you problems about it Then reach out to somebody in a support group. There's some great people reach out to myself, if you want. I did a conference call one time with somebody with ALS and the rheumatologist and we kind of talked about their symptoms and my symptoms and how mine were similar, not the same. Similar this person's and the rheumatologist did agree that it probably was Ankylosing Spondylitis and decided he would go ahead and do the testing for it. I've done this, if you want to do it, let me know. There are plenty of us out there that will be happy to help you in any way we can. 

Number 24, Stay on top of AS physically, mentally, and spiritually. Be optimistic. I can't tell you how much that's important. This disease sucks. It will suck the life out of you if you let it. I've seen people that have just piss poor attitudes because they've lost their ability to do whatever they thought was their God given talent. I understand. I didn’t ever envision myself being on disability at age 48. It's not where I wanted to go. But you know, you have to use that old adage take lemons and make lemonade out of them. I'm hoping that by doing this, I'm helping you the listener feel better about yourself. Read a read a book of whatever any type of uplifting information. If you need affirmations, look for those. If you need the Bible, read the Bible. If you need just fiction books, read fiction. If you remember Amazon, Amazon has a program where you can borrow a book every month from them to read, you don't have to buy it, you can just borrow it. So use that if you if it's something that will take your mind off. So whatever it is, focus on learning stuff and keeping your mind in a positive place. That'll dramatically help with How you conquer as remember, you've got Ankylosing Spondylitis doesn't have you. So keep that positivity going. Don't use up all your energy fighting fatigue this 

Number 25. Don't use up all your energy fighting fatigue. Rest and move forward. You know, this is a great example. I live alone, not married. I clean my house. But I can tell you it takes me four. Basically all day to clean my house from vacuuming. Laundry dishes. Were what I call an able bodied person could blow through it and maybe two hours because they never stop. I have to stop. So I vacuum stop. That stop might be 10 minutes. Might be two hours depends on how my hips feel. Depends on how my back feels. But then get up and go fold laundry. Go clean a kitchen counter. tops, whatever it is, do that. But remember; don't try to just blow through it all as a quote unquote able bodied or normal person would. Because all you can do is burn yourself out and create issues, possibly even a flare. So take care of yourself. Nobody's going to criticize you for having an all day cleaning session instead of just a few hours. 

Number 26. Realize there will be good days and not so good days. Do the very best that you can. This is important because I can tell you from personal experience, you'll wake up in the morning you'll feel great. You can't wait to go out with your buddies, your girlfriends. You know, you got a date, plan, whatever it might be. You're all excited to do that in the morning. By four or five o'clock in the afternoon, you're like, “I can't do this, I'm exhausted.” You know, maybe I worked that day, maybe I, maybe I did nothing, but I'm going to flare. And you end up thinking and having to cancel plans. And I know, you feel terrible for doing it. You don't want to do it, you just physically can't do it. So make sure to get that rest in there, make sure to get your eating properly, really watch the weight. You know, this goes back to being optimistic. If you have bad hips, or the propensity to have bad hips, from a disease, like as all any extra weight you carry; can put dramatic pressure on knees, hips, and feet, all of it. So really watch your diet. And I don't mean for a short-term diet. I just mean in general, long term, and watch what you put in your body. Again, there's no right thing as to what to put in your body. All of us are going to react different to different things. So as I've said, it's great to go out and ask for maybe a Keto Diet or What I like is the NSNG diet by Vinnie Tortarich was on the show a few episodes ago, or last episode, but make sure to do what's best for you, you're going to know what triggers your AS. And I'm finding out that for me it's gluten the type stuff I cannot eat a lot, little bit but not a lot. I really can't do pasta anymore. I made a switch to the vegetable pasta. And the op i can do because it's made out of potato, but I can't do a lot of it. And I'm starting to cut back on that. And what I have done which turned out really good as I got meatballs, put them in a pan, put all sorts of the pasta sauce that I liked on them and then covered it with a little bit of cheese and a lot because the cheese is a an inflammatory item. So I wanted to reduce that at my diet. baked it. Fantastic. No noodles, all meat, vegetables, I think was a fantastic deal. So I encourage you to look at foods like that meals like that. Meat Loaf's, you know, all again, whatever works best for you.

Number 27. Pay attention to potential hazards such as slippery rugs cracked pavement. Falling can result strains, sprains fractures. Just be cognizant of your surroundings. There's a crack in the sidewalk and there's a lift up, you know, be careful of it. Again, I'm using myself as a guinea paper as a show and tell you all that I have a drop foot from my last hip replacement on my left hip. Little spots can throw me and I can catch my drop foot because it doesn't pick up anymore. So I have to be cognizant of there's a crack at the sidewalk. If there is a little bit of a lip on a door, you know for the seal at the bottom. That goes up in interest. Oh, hi. To watch all that, because I can tell you I've tripped, I fallen. Hell I've tripped on flat surfaces before. And when I fall, I tend to fall in favor my right side. And I'm pretty much sure that one of these days I want to break my collarbone by doing that. So be very careful of how you do that. Be very careful of how you fall. 

Number 28. Wear your seatbelt! Protect your body. We know that if we're in a car accident, and you get tossed around like a rag doll, because you don't have your seatbelt on. It could be a much, much more of a severe issue for any of us because we could break next backs. Anything so sure your seat belt, you still going to get probably crunched around if there's an accident, but maybe not nearly as bad. 

Number 29. Make the commitment to exercise and practice good posture. We've kind of covered all these in the previous bits, but remember Sit straight, you know, keep your legs good exercise. If it's as simple as doing some squats in front of the mirror before you get in the shower, just anything to get that heart pumping, to burn some energy, get up and stand if you have an iPhone or an Android phone, put the exercise apps on there. Again, track whatever you want to track. I use lose it. I don't get a dime for that. I just haven't like that. Because I lazy and I can scan the UPC is a food so that I can track what I'm eating. I find that I'm much more accountable to myself when I track what I eat. That what it's just a free for all. So again, those 29 are from a website called healthline.com and they were written by Elaine Rushnell. I'll put a link to the show notes to these 29 things only someone with Ankylosing Spondylitis would understand. I hope you all have a great day, a great week. Hope you New Year's was fantastic and your Christmas was great. So if you have any questions don't hesitate to reach out to me. Take care. And let's keep this positive, you know, vibe going for the Ankylosing Spondylitis into 2019

Link to Healthline article: https://www.healthline.com/health/ankylosing-spondylitis/living-better/29-things#18