Hey welcome everybody. I appreciate you taking the time to listen to this episode of The Ankylosing Spondylitis Podcast. It's kind of interesting, as a person that's had Ankylosing Spondylitis for over 34 plus years, I'm in no way an expert and I continuously learn. I'm an only an expert on the way as has affected me and the weird thing or the unfortunate thing about this disease is that we are all affected differently.
One thing I do notice as I read the forums, whether it be on Facebook or the different areas, is I see people that are maybe in the earlier stages of AS and still quite flexible, still can move relatively well and I see a lot of talk about, I've cured it, I'm going to fight back against it to the best of my research capabilities. There is no such thing as curing Ankylosing Spondylitis, there's remission and I hope you all enjoy long fruitful remission. But I found nothing that says that there is any wave based upon medical research that as is actually cured. I'm not saying that to be a downer, I'm just saying, go into this realistically go into this with the idea that you're managing something that's going to affect you for your lifetime.
Whether you be in your 20s 30s 50s or 60s, you're going to be dealing with this most likely the rest of your life and that if you take that attitude, my thought is if you carry on forward with that attitude, well as a chronic illness, there's going to be good days, there's going to be bad days, you're going to end up fighting this with the good fight, you're going to come out of this much better than somebody that is always trying to ignore.
With this podcast, one of things I want to look at is can we help this with diet? I see people say, “Oh, you've got to be a vegan” or all you've got to eat this or “You must eat…” data you stay away from this.
You know, I really don't know because I'm a terrible example I do not follow any type of specific diet. And I need to. I've had four hip replacement actually three hip replacement operations and one revision that failed and I carry too much weight I need to be able to lessen the weight that's being carried on my joints.
My last surgery created a drop foot for me on my left foot, which means I now will be wearing a brace. Matter of fact today I went and got fitted for a brace to hopefully help to keep me from tripping so much on my left foot. So there are a lot of things that can affect that. The weight that I carry, and the limited use of my left leg.
I can't exercise I can't go out and run I see people that are able to do that. The stretching is great. All of these items, whether it be running, stretching, anything to keep that weight off. Stay away from any type of diabetes, or, or any type of sedentary lifestyle as best you can is going to only benefit you. So as we go forward in this, I want to look at diet. I'll be having somebody on pretty soon talks about a diet based upon it's called NSNG, no sugars, no grains, and Vinnie Tortorich here to talk about it. And in that episode, you'll find links to his books and his website and videos and he's had his own podcast. He's got a lot of good evidence as to the no sugar, no grain theory, and how it can help and reduce inflammation, which is really the main issue that we all suffer from. And on top of that, it can help to keep some of you, hopefully the weight off.
I've also planned on having a person on to deal and talk about, you know, relationships, not how you deal with your friends. I think we all do fairly well in that aspect. It's really the relationship you have with others that care for us. Whether it be a boyfriend, girlfriend, whoever.
You're going to deal with situations where you're having a flare, and they don't understand is if they don't have any type of illness like this. They're going to have higher energy levels most likely want to get up and go and do things and there's going to be times when you just don't feel like it and how do you deal with those? How do you explain that to somebody? If you're not in a relationship dating, when do you bring up something like Ankylosing Spondylitis? Even the name can scare people. So how do you bring that up? How do you explain that there's going to be times when you just don't want to do anything and on top of that, maybe there are other things that are affecting you besides just the AS.
I also hope to look at medications biologics as a big thing. When we look at the different items I've been on, oh, Enbrel, I've been on Humira and both of those didn't work for me for very long. I would take them have great results for two-three months. And then it was just nothing.
A pain would come rushing back. I now have been on this is December. So I've now been on Cosentyx for a year (and it's for me, this is not medical advice. You know, please contact your doctor but for me co Centex has been a game changer). This is something I wish would have been around 25-30 years ago. I might have had less hip replacement operations and not been dealing with some of the issues I am now.
It’s (Cosentyx) removed much of my pain. And now the pain that I have for the most part is the leftover of my spine already being fused. My lower spine is already sore and stiff all the time because the vertebrae are fused. So there's nothing I can do about that. But I have better ability to take deep breaths. I don't have that constricted lung feeling like I was for a while and I'm only hoping as I lose weight, that ability to take deeper breaths comes back to me, you know, many times over. So tell me what affects you. You know, come on to the podcast, send me a message from Facebook, or from Instagram. Let me know how you guys are doing let me know what you're feeling. Let me know what is affecting you. Let me know what you'd like to hear. Experts come on and talk about. Again, I I hope to have somebody on from the company that makes consent tix. I'd like to have others on to discuss how they deal with their AS how they've dealt with it short term. It's, you know, for people that are relatively new, what type of things would you want to hear?
I know I've talked to folks that are newer, into the journey of AS, and you never want to minimize anybody's pain because pain is pain. But I try to explain in some cases, they're paying me lesson as time goes on. It's hard for them to hear, especially if they're in a flare at that particular point. Because all bets are off at that time. But for me, pain has lessened as the as seems to become less aggressive than it was say in my 20s. I was a miserable person in my 20s Knees because the AS was so bad, so strong. It's one of the things that definitely contributed to the failing of my marriage in my 20s and early 30s was strictly due to the fact that I wasn't treating the as the way it need to be treating, treated, I wasn't on the proper medications. And I was just a son of a gun. I was a bastard, to be around when a flare would hit me. On top of that, especially like I write us, or any of those other diseases that are the peripheral of as when they would affect me, forget about it. I was just all just a miserable person to be around. And, you know, so as we go through this journey with as I'd like to hear from people, where is it that they get most of their pain, spine. Mine was in the spine, but it wasn't as bad as the hips from the hips down. I was constantly in pain, my heels of my feet, not so much my knees, but the heels of my feet would be almost impossible to walk on at times. hip pain for both the right and the left side. I had my left hip replaced the first time in 1991. I was 21 years old, then the right hip. I remember being at work one day and I lifted a box. And I pivoted, and my right hip gave out. And I looked at the person I was working with, and I said, it's time to have this hip replaced. Sure enough, I went to the doctor and they're like, all this has got to come out and change. And that was when I was 23. Knock on wood, I'm 48 almost 49 that right hip is still going strong. It's 2025 years old, almost 26 years old. The left tip I haven't had as good luck and that's created a lot of the problems I deal with. You know I also excuse me, as we talk about different medications.
You know, are you in a state that allows for medical marijuana. I am in Michigan, where not only is their medical marijuana available, but there's also recreational marijuana available. Now. I don't use either of those. Not because I disagree with them I'd love to. But I also don't want to lose the rights to purchase and or sell firearms, I enjoy going to the shooting range, I enjoy hunting. And so until they remove that federal violation, which then limits my second amendment rights, I have to stay away and just hopefully see the anecdotal evidence come up that the CBD oils, the recreational use of marijuana in the medical use of marijuana. It all gets in and helps to alleviate some of the pain. So I've thought about having people on From the marijuana industry here in in Michigan, but if you're in another state and have connections and want to hear from that state, I'm completely open to it as well. Whether it be retailers, growers, or just the medical marijuana industry, I, this is a podcast for all of us. I do it. I want to have you all on. At some point, you know, this is an open forum. So if you want to come on, just shoot me a message through Instagram or Facebook that you want to come on or we'll talk and we'll get you on I, I want this to be for everybody. I've got plenty of bandwidth to put podcasts out. So unfortunately right now due to due to limitations, if I can better figure out or have one of you guys show me better how to use Skype. Then we can go around the world and whether you're in Australia, India, Europe, wherever I can get john but right now I don't have that recording of Skype down 100% so I'm limited to just Mexico, United States and Canada at the moment, but again, anybody can show me how to fix Skype. We can go much farther.
So, back to when you were affected by affected by the Ankylosing Spondylitis. How old were you? Were you and your 20s? Can you remember younger when you 30s your 40s? In my case, I was diagnosed at 14. But I can remember going back 10 nine and being told, oh, it's just growing pains, you'll grow out of it. You're, you're fine. Well, we weren't and at that time, there wasn't the amount of medications and pain management that was available. You just literally just had to tough it out. And there was you know, take some aspirin and that was about the extent of what the rheumatologist could provide to me back in 1984. You know, do we want to talk genetics? It'd be neat. I think it'd be neat to have somebody on to talk about have many of us done our 23andme or ancestry.com, or whatever, to see how we're affected. Are we all HLA-B27 negative or positive? I'm positive. I don't remember my kids test results. We tested them and none of them I think were positive for that marker. But my oldest daughter mentions some hip pain, so I'm hoping she doesn't have it. So those are the things that we look at. I don't want this to be a venture that causes dissent among people with AS. Again, the, only constant with Ankylosing Spondylitis is that nothing is the same for all of us. We all have a journey to follow with Ankylosing Spondylitis. Our journeys are all going to be different, but the same, we can be compassionate to each other. We can listen Be there. The first time I met people that had as like me, it was an eye opener. Growing up where I did, pre Internet days, I was the only one that had AS. Nobody in my family had it. My parents were basically first generation in America. So we didn't know anybody back further and grow. You know, I was in a real small town in the thumb of Michigan.
I didn't meet somebody that had AS for a decade, and then it wasn't a Bobby till another decade after that, that actually had meaningful conversations with people with as that all of us dealt with this.
This issue as we marched forward and worked on it. We all experienced it differently. But they were the first times I ever felt that the person sitting across from me, could empathize with me and not really looked down upon me not feel sorry for me. I didn't want anybody feeling sorry for me. I think that's probably a constant is I don't want to be felt sorry for. I just want to be understood. Tell me is that how that goes for y'all. So anyway, want to wrap this up, it wasn't really set to be any specific topic. It's just that I wanted to get out and communicate with everybody. And I hope you'll respond back. I hope you like it. I'm not going to do a whole lot of editing on these shows. I want to keep a fairly raw fairly just whatever goes in the microphone is what you guys hear that way. You know, I, I don't know. To me, it just is better. Whatever you hear is what you get. So I hope you guys have a great afternoon. I look forward to hearing from you. Please go out and check out the Ankylosing Spondylitis Instagram page. Feel free to hit me up on Facebook at Jayson Sacco and I look forward to Hearing everybody's stories, being supportive with everybody, knowing where you stand and where, where you're at and what locations and you know, just how we can better be there for each other and be resources for when you have an issue with your rheumatologist or spouse or a sibling or whoever, that we can all kind of lean out there in a more easy way to, to, I should say put a helping hand out there to each other, just to let others with this condition with Ankylosing Spondylitis know that there's people out there for them. So anyway, enough rattling on. I hope you guys have a great day, and I look forward to hearing from you all in the future. Take care