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The Ankylosing Spondylitis Podcast

Episode 8

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Published on:

16th Jul 2019

12:00am

Episode 008: Susan Bratton - Lets talk about sex... Intimacy and romance

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Lets talk about sex, intimacy, and being with your partner. In this episode I speak with Susan Bratton.

 

Susan Bratton is considered the Dear Abby of Sex. She's a problem solver for sexual situations. And she extolls wisdom that comes from helping sexual seekers with reality-based, 21st century solutions.

She writes books, publishes online sexual home study programs, does TV appearances, speaks from stages, has an AMAZING (and sexy!) YouTube channel and Instagram feed and the energy to perk you up and give you more than hope... Susan gives actionable advice you can take to the bedroom.

I'm thrilled to have her on the show and she has a free gift for us today from her Amazon #1 international best seller, Sexual Soulmates called, The Sexual Soulmate Pact. 

http://sexualsoulmatepact.com

 

You can find Susan online at

Susan Bratton - https://susanbratton.com

Twitter - @SusanBratton

Instagram - @SusanBratton

YouTube -  Susan Bratton – Better Lover

Please share this podcast with your family and friends that have Ankylosing Spondylitis or are with someone with AS.

Episode 7

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Published on:

18th Feb 2019

9:40pm

Episode 007: Gina Ryan - Dealing with Anxiety

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In this episode, I chat with Gina Ryan (theanxietycoachespodcast.com). Gina assists people in an online group sessions or one to one sessions to deal with anxiety. Gina’s podcast (podcast episode index) can provide you with a wealth of information to assist you and provide you with some insight into how Gina can assist you.

You can interact/connect with Gina via her website, Facebook, Twitter, Pinterest, Instagram, and LinkedIn.

You can subscribe to the podcast via iTunes, Google Play, Stitcher, Soundcloud, and Spotify.

Episode 6

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Published on:

21st Jan 2019

4:38am

Episode 006: My Name is AS and 4 Reasons to Start Treating your AS

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Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today is going to be kind of a unique episode. I'm going to do a couple of things, but they are tied together. First and foremost, I'm going to read an item that I found online called, “Hello, my name is Ankylosing Spondylitis.” From there, I'm going to review an article that talks about four reasons that you should be treating your Ankylosing Spondylitis. So these tie together because one paints a very, very bleak picture of what we deal with and what you may deal with it sometime in the future. Again, this is not set in stone medical advice. It's strictly just readings and opinions. So make sure if you have any concerns or Questions about anything that we discussed today that you go ahead and talk to your doctor. And then lastly, I'll consult an article from healthline.com about four reasons you should treat your Ankylosing Spondylitis. So I hope you guys enjoy the two pieces put together and I think Kylie Frost from Kylie's race to beat Ankylosing Spondylitis Facebook page for the information. Last, but not least, a housekeeping item. I want you to know that Patreon page is up and available. If anybody should feel inclined to become patreons of this podcast, it's greatly appreciated. Secondly, if you go to the spondypodcast.com page, on the right hand side you can access The Ankylosing Spondylitis Podcast t-shirts, sweatshirts, there's men's women's versions of shirts in there. So I hope to see everybody ordering. I've gotten some feedback from folks that have ordered so far and they like what they see. Everything will be on order until I believe the end of February and then the items will be printed. And you'll be contacted about shipping dates and shipping costs for the items at that point. So anyway, take care and enjoy. The other night I was going through Instagram and I came across this post. And it was a discussion or writing about ankle closing spondylitis. I read it and I thought that is exactly my existence with Ankylosing Spondylitis. Now, I know many of you have different outcomes again, because this disease affects us all differently and I see many of you that are not all but many of you that are younger and haven't had quite fusing yet that you end up with a different experience to how you deal and the ways you can deal with Ankylosing Spondylitis. 

I wanted to read this and but I hope anybody that wants to discuss it will email me at Jayson.Sacco@gmail.com. It's on the web page. For spondypodcast.com and Jayson is spelled j a y so n dot s a c c o @ gmail.com. I did find this on a Facebook page that was called Kylie's Race to Beat Ankylosing Spondylitis. She is in New Zealand and is working to run marathons in spite of her Ankylosing Spondylitis. So I cheer on, I congratulate her and I hope that you all head over there and like her page. 

So let's go ahead and I want to read this and it's a little lengthy, but here we go. Hello, my name is Ankylosing Spondylitis. I am your monster in the dark. I only can be seen once I have destroyed you completely and it's all too late. I'll make you tired. I will make you weak. I will create a complete pain throughout you that you cannot withstand. I am the cruelest of cruel. Your hands will cramp and creak your back will be unfair. The pain will be so intense it will drop you to your knees. It will be so sharp at times like a knife being stabbed into you over and over again. I get great joy and destroying all that's good in your life and no one but you can see and feel the monster I am and what I am doing to you hidden from their eyes. Out of the master of all this and the master of you, your hips. I will take them in pain so severe you will cry begging God to help you and your life a belt you will tie around your leg just so you can lift it to move it in the mornings as I take your hips away permanently. Your neck, my goodness, your neck. Well this will become a test of your will to live the neck so stiff and fused you can't move your head ever again. Then the nerves a crush create endless headaches of mass destruction of your mind and soul a pain never relieved by medications or surgeries. A 24/7 365 headache, so awful that it destroys you mentally and emotionally. It's amazing what I can do the knees, the last motion, the pain, the tears, the fight. Fighting every day waking up saying out loud to yourself, is this monster going to ever give me a break? The scars are endless that I will leave on you. I will destroy and scar every ounce of you. I will be sure to take your mental state and destroy your mind bit by bit. No one knows me or understands me but you all others and passer buys have no idea who I am or the monster I am. I have a name no one knows or even recognizes there is no cure. There is no beating me I am too powerful. The most powerful I am is when I consume your bones and hit them like vices crushing you tighter and tighter forced me to move less and less till no part of you ever flexes, bends or moves ever again. If your bones aren't enough, I promise to calcify your tendons, ligaments and connective tissues until there are painfully hardened masses like pure bone painful throughout frozen from ever stretching, flexing or any motion again and on fire with pain to just because I can Pray to God beg him to end it all, beg him to make it stop cry your tears and scream and pain. I will never let you forget. I live in here with you. I am one of the worst ever degenerative diseases to consume living creatures and never end my week. I will destroy you and more every day. Be sure to remember who I am. I am the all-powerful Ankylosing Spondylitis. Say my name, say it loud. I will not matter though because I am unknown to nearly all they will laugh and look at you and say there is nothing wrong with you. It's all in your head. Doctors, physical therapists, mental therapists, specialist surgeons. Let's not forget the medicines you take to help with me. The list is long and side effects longer I laugh at the pure hell I put you through. Lastly, be sure to remember that if somehow some way you managed to find inner strength to fight me the sheer willpower to remain battling me the pure fight that an IV remember I will eventually be attacking or internal organs one by one hardening killing them as I strangle their nerves, blood flow and overall movement like the bones, tendons, joints and ligaments I began with you, you will not win. In this final part, if that's not enough is what Kylie wrote. And it goes all in all I can say this disease is evil. This disease had destroyed who I was, destroys who I currently am, and assure to destroy all of whomever I ever could be. It's destroying me emotionally and mentally to I would not wish this on anyone, not even a worst enemy. Ankylosing Spondylitis knows this. How will make people see and know your name before you have completely destroyed and gotten rid of me. Again compliments of Kylie Frost from her Facebook page, Kylie's Race to Beat Ankylosing Spondylitis. 

That's pretty heavy stuff. Not all of you will have encountered this level. There's things in this that obviously I haven't encountered yet, and I hope never too, but I think we can all take pieces from it and apply them to not only what we've been through, but what we're going through and Most likely what will encounter in the future. So I hope you enjoy the rest of the episode. You know, I really appreciate everybody that listens to this. 

Let's get into this. This particular article that I came across again was from healthline and it's written by a woman named Annette McDermott, and I'll have a link to this in the show notes and it's “Four Reasons to Start Treating your AS Now.”

Number one, well, obviously Let me take a step back as everybody's well aware, or I hope is aware there is no cure for Ankylosing Spondylitis. We all know it's a very painful at sometimes more than others, but painful, you know, chronic disease that we all have been lucky enough to get in. So as we know that this arthritis can affect your spine and in my case, my lower spine is already fused. There's nothing I can do to change that. But if you're younger, do what I didn't do, which is exercise, check out yoga. I think yoga is really beneficial and wish I had found it way, way long ago and actually put it to you Because it really helps to focus on your stomach muscles, you use them a lot and anything to keep that weight office and focus and keep those stomach muscles active is I think very important. So, on top of the spine, I've had AS affect me in my heels of my feet, my rib cage, my neck is quite bad and fused. I don't have huge abilities to turn it one way or another. So many times you'll see me if I turn I'm turning my whole upper body, if not my whole body to look at somebody. I also walk with a cane due to the hip replacements which I've covered in other episodes, but I'm just kind of going along as a checklist of what it's affected on me. And then last but not least as I write us, which I've had a number of bouts with, that's been quite a bugger. I have all the things that have affected me with Ankylosing Spondylitis. It's the iritis that I absolutely detest, and I'm glad that I've haven't had it knock on wood in quite a while. So all those things can affect you and you may have other things that affect you, I really haven't had any issues with my hands or knees. I don't know if other folks have but for those I've been fairly lucky and not had any real issues with those, you know, once we're diagnosed, depending on when and how you're diagnosed, you can really start to feel alone. And that's really one of the things I'll focus on as we talk a little bit as there's so many ways to get in touch with people now and reach out and you know, just listen to the podcast contact the guests. In the last episode Ricky White, he's a great person to reach out to if you have issues questions, his book I can't wait to read it is how to deal with your doctors and make sure that when you go in there you have an agenda set up so that your appointment is everything you need it to be also good if you're younger, doing the exercise and things like that as important and let's get into it. 

Number one, you'll manage your pain better. We all know that as affects everybody differently, and there's nobody out there, that's exactly the same as the other person which makes it very difficult to treat it. So one of the things you look at when you treat it as we all know, we need your general practitioner, hopefully a rheumatologist and then any specialists on top of it, whether they be saying acupuncturist, a therapist, physical therapist, because on top of the physical items that we go through, as can bring a whole series of mental items. Most of my life I've had severe anxiety, the anxiety was such that there would be times when it almost felt like paranoia. So most of that was been controlled. A lot of it was through years and years of therapy to deal with any of my issues that were causing anxiety. So don't be afraid to talk to friends about anxiety to reach out and get professional assistance. That's really where I want you to go is find a therapist that can help you with your anxiety issues. Ankylosing Spondylitis takes such a huge toll on our bodies that our minds pay for it as well. So you really need to make sure that that therapist is there to help you deal with the items that come along from Ankylosing Spondylitis. Whether it be feeling guilty for not being able to go out with friends having a lack of sleep, you know, that foggy brain that we can get. So all of that can lead to mood swings, depression and really get in front of that before it happens and talk with somebody whether it takes medication to help you with it or just talk you know, reach out and don't isolate yourself.

So under the your manager pain better, she listened number of items, including mood and mental health, sexual function, cognitive abilities, brain function, I had to laugh because she in this article, they repeated sexual function again. So I'm just going to go with the idea that this was just a very horny author and not a not a slip up sleep and cardiovascular health. All of those play a role in our daily lives. I have to sleep with us. Apnea machine, mostly I think because I'm overweight, but my snoring and everything is ridiculous. So all of these are items that I've tried to address cardiovascular health, I have very high blood pressure. Again, it's from being overweight and not having a ton of ability to exercise. I'm hoping to take up kayaking the summer as a good way to do cardio. So depending on where you're at, maybe you can do kayaking, maybe you can do biking, you know, whatever works for you, brain function and cognitive abilities. I'm going to leave that up to you dealing specifically with your therapist, to find what works best for you. Or, again, don't cut yourself off, reach out, talk to friends, make sure that you don't isolate yourself, and then sexual function, if you've got a partner and hopefully they're willing, you can try all sorts of different items. There's a number of different places that you can go to find sexual AIDS. Again, reference the show notes, I'll have links to different places. Whatever It can be that you need to help make your journey through as more fulfilling with a with a partner that you're having sex with. 

They're continuing to do research. I mean, jeez, this is now 2019 and over the last 30 plus years that I've been dealing with, as I've seen just tremendous leaps and bounds, including the biologics that we started seeing biologics on the scene, I think in 2000 Oh, was it 2003 and we started off with the TNF items and now I'm on Cosentyx, which I love But again, it's not medical advice, consult your doctor for any type of biologics that might work best for you if they are able to 

Number two and this is kind of what I was alluding to earlier. You know, as you manage your AS you'll reduce your risk of as related depression and anxiety. That's really a big one. As you go through and deal with the thoughts of I can't do these things that I used to love to do. I used to be a runner, a believer, not if anybody saw me now. They will wouldn't even be able to see that I used to love to run long distances cross country, you know, to three miles, I can't run two or three feet now. So with that said, you know, I've lost the ability to do any type of hiking and getting out in the woods that I really liked to do. So I've had to find other things like this podcast and some writing that I'm messing around with. So do what you can do to not fall into any type of funk and not try to let as overtake you. This disease is going to rob us of certain things. It just is what it is. I hope you can find a therapist that can help you deal with the process of what you've lost, but also what you gain. You gain a community of people that know exactly what you're going through. You're not alone in the struggle. So reach out to people see what they do for hobbies. I love to hear from people about what your hobbies are. I know some people do knitting and crocheting and different things that are not physically demanding, but still allow them to function. I've seen people Turn around and go from doing physically demanding type careers to doing computer work to doing stuff that is more of a sit at the desk and work to make a living. And then some of us have gone on to disability because the constant sitting is not something we're even able to do. So just whatever it is work to manage that work to talk to a therapist, don't let the depression the anxiety get the best of you. In this she talks about most people with as we know, live full of productive lives. We all know that living with pain and chronic conditions is challenging. So that's where the anxiety and the depression come in. She mentioned the 2016 study showed that people with ALS are 60% more likely to seek help for depression than the background population. Well, as far as I'm concerned, that's kind of a No kidding. If you're constantly in pain, you're going to be depressed. So you're much more likely to seek out the help of a therapist to talk through that. So again, Well that's kind of a no brainer item just understand you're not alone and go ahead and reach out for any assistance you might need. 

Also for number three on this she says you may limit your risk of as problems outside of your joints we know that we know as affects our spine, our large joints, mine was my hips. But she says in this as may wreak havoc and other areas of your body to according to the Cleveland Clinic as results and I issues in 25 to 40% of the people with the disease I write us a condition that causes I inflammation, light sensitivity, and even vision loss is common. When I first was diagnosed with iritis, it was treated as pinkeye. I was put on medications for pinkeye, which was the, you know, drops in the eyes. And three days later, I was in so much pain that even in the dead of night, the light from a streetlight would cause me blinding pain in my head. So I was lucky I was young enough living at home, my dad took me into the emergency room, and there just happened to be an ophthalmologist at the emergency room on a Sunday which usually doesn't happen he walked in and he found out I had Ankylosing Spondylitis he says you have iritis and he started treating it and he told me I was only a day or so away from losing my eye that's how severe it was. To this day there's times when I get a little bit of vision loss due to the damage done to the cones floating in my eyes and the stuff that stuck the doctor told me never to bother with LASIK because with as it's not going to heal properly and he says you're going to you're going to end up being a prime candidate for cataract surgery. I came to think about what the older folks have when they have the cornea is rework So anyway, just know that that I write us as a major one if you have any eye pain call and I've mentioned this in other episodes, call an ophthalmologist and get in as soon as possible. Let them know you suffer from Ankylosing Spondylitis. If they tell you there's a long wait they'll usually figure out a way to squeeze you in early. So again, as we talked earlier about doctors have on staff and ophthalmologist is another One that you want to make sure that you have a good relationship with. 

I've also in this and I wasn't familiar with this, but I'd love to hear from anybody that's experienced this is lung scarring. I'm not even sure what they mean by that. 

The next one she talked about was decreased lung volume and difficulty breathing. I have that they checked my deep breathing and I'm sure most of you always have your lungs listen to when you go in. I do have some tightness from my rib cage, I have met other folks that are really bad to have their ribs really affected and their breathing is compromised to a degree from that. 

Then she mentions neurological complications from scarring of nerves at the base of your spine and I'm not sure if that's what she means as far as like when we have SI pain, sacred iliac joint pain, or in my case, I had nerves damaged in my left leg from a hip replacement. So I have a drop foot, not sure if that's what she means or if there's other items outside of the SI joint. 

Then last but not least, you know this is going to be a short episode, it's, you know, just four things is that you may slow the disease progression, we know this, everything you can do in your 20s. To slow your progression, in my opinion is going to pay huge dividends in your 30s 40s 50s and beyond, if you can get ahead of it, do the yoga, do what the doctors tell you get on the

Episode 5

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Published on:

12th Jan 2019

5:08am

Episode 005: Ricky White - Author and AS Warrior

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In this episode, I interview Ricky White, author and current President of Walk AS One. Ricky (www.rickywhite.net) was diagnosed in 2010 with Ankylosing Spondylitis and it would lead him on a whole new journey. He was a nurse at the time and AS left him at times unable to easily perform the physical side of nursing. Through the years, Ricky transformed to a stay-at-home dad while his wife went to work when they moved to the United States. He was doing a blog (www.endlesstrax.com) that was popular in the AS community. He no longer posts to it, but the works are still there to read.

 

If being a stay at home father and getting  back into karate wasn’t enough,  Ricky started helping to found the 501c3 charity  Walk AS One (www.walkasone.org). The group wants to see everyone with AS keep moving to fight the affects of AS that can happen with a lack of exercise/movement. In May of each year for AS Awareness Month, there is the event Walk Your AS Off (www.walkyourasoff.com).

 

Ricky has written both fiction and a non-fiction book. The non-fiction is a great book to help you be your own advocate for dealing with your doctors. The book is called Taking Charge: Making Your Healthcare Appointments Work for You (http://mybook.to/taking-charge) that is available from Amazon. As both a nurse and patient, Ricky’s book can help you structure your appointments so that you can work to get your questions answered and become your best advocate for treatment.

 

The Ankylosing Spondylitis Podcast shirts are now available for order. Follow this link lakeshoregraphics.net/fundraisers

 

I am collecting orders till end of February (2019) and then shirts will be created and mailed.

 

Also, the Patreon page is up, follow this link: www.patreon.com/aspodcast

Episode 4

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Published on:

5th Jan 2019

12:26am

Episode 004: 29 Things About AS You Should Understand.

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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...

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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.