Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. How's everybody doing? I can't believe this year is more than halfway over. It's flying by even as, as goofy as 2020 has been. The year is just flying right by today's episode going to be a little bit different. There's a website that I like, and I sign up to get notifications when they send out new articles that are put up on the website. And the website is called ankylosingspondylitis.net. And you can go there; you can sign up to get notifications. There are some good articles, and they're almost all written by people with ankylosing spondylitis, which makes them kind of interesting to read and see what others are going through. So the notification came the other day, and I see this title it says Be True To Yourself, Even if it Hurts. I noticed it's written by Jed Finley. Jed was on an episode recently with myself and a number of other people with Ankylosing Spondylitis, Episode Number 57, which was the group discussion on our Ankylosing Spondylitis journey, and I'll have a link to that in the show notes. Jed also started the Facebook group Living with Ankylosing Spondylitisthat has 28,000+ members in it, so it's a very active group, a lot of people a lot of discussions going on, on all sorts of different items. So anyway, he wrote this article, and I started to read it and you know, I agreed with a lot of what he was saying, and I'm just kind of gonna go through it and give my feelings and two cents on it. And the article is titled, Be True To Yourself, even if it hurts. And again, it's available on ankylosingspondylitis.net. and I have a link to that in the show notes.
So Jed writes, you're walking down the street, you run into someone, you know, they stopped to talk and the first question they ask is, how are you? Well, we've all been there you see somebody, Hey, how you doing? What's it like? How are you feeling? For me, I walk and many of you can relate to this. Walk with a cane and I'm hunched over. So just seeing somebody coming is can be a challenge because I'm looking, you know, my neck is fused down. So to look up, I don't always see who's approaching. And my peripheral vision on the sides is bad. So I've had people say stuff to me and I, I've turned my whole body to look at them. And I think sometimes I might not hear them and they think I'm being rude. And that's not the case. It's that I don't see you or don't hear you. So, again, it's just one of those things that AS just keeps giving and affects us in unique ways. And it continues when you have a chronic illness. This is a loaded question. And it's loaded for T Rex, your friend or acquaintance is not ready for the blast. That is your answer. You say to them something like my back has been killing me for a month. I have four doctor's appointments this week. I'm trying a new medication, but it gives me headaches and my relationship with my spouse is strained because of my illness. He goes on. No, we don't say that. We don't even mention we are doing that great. We say the same thing every time I'm fine. Well, isn't that the truth? If you go into a big rundown of everything you're dealing with, most people are going to check out after like 30 seconds, then you're going to get the obligatory. Uh huh. They've got their own things they're dealing with, in some cases; they ask you how you're doing and they really don't care. They're just being, you know, nice, and that's fine. But you always have to temper it and that's one of the things that stinks about this diseases. Is it just somebody you talked to in passing? Or is it somebody that you might really know, and want to have a little more of a deeper discussion with it, and you have to judge whether they really want to have that deeper discussion, to understand maybe what Ankylosing Spondylitis says, I live in a very small town and recently, I was featured on the front page of the newspaper talking about Ankylosing Spondylitis. This was really great in that I've gotten a lot of local feedback from people that have Ankylosing Spondylitis that I had no clue about. So it's been great to connect that way. And I've had people say, Hey, I saw you in the paper and great article and you know, different things. So it was neat, that people are reading it, and it can bring some awareness and maybe might temper some of that. Well, how are you question, at least locally, because they read in the paper that, hey, he's not doing that Well. So maybe if I'm smart enough, I'm not going to ask him. How is he doing? So I don't know. It's just you think out loud as you read through some of these things. And, you know, it's just kind of how you deal with in our day by day basis, he continues, we know nobody is prepared for the truth, nor do they really want to hear all that is going on. They expect and I'm fine and to move on down the street. I'm fine is our way of protecting them and ourselves. And again, it ties back into the point of; we only have so much energy in any given day, Ankylosing Spondylitis is draining. As it is, do you want to continue to run around and tell everybody how you're doing when they most likely aren't going to listen? Now, that doesn't mean don't be an advocate. Definitely be an advocate, if you choose for educating people on Ankylosing Spondylitis, that might be a article to the newspaper that might be a internet post. It might be coming on and posting and being active in one of the forums like living with Ankylosing Spondylitis. Being an advocate, it can be with people that are just coming on board that don't know anything about Ankylosing Spondylitis, or just got that diagnosis and are nervous and you maybe you've been dealing with it for four or five years and you can say, Man, I remember what it was like when I was in that situation and your words, your response to somebody on a forum, maybe that calming piece that they need to read. Just consider, you know, if you want don't hesitate to, to not be a advocate for Ankylosing Spondylitis. So he goes on, the truth hurts, but why? Why do we feel the need to protect them? I want to share my reasons and afterward I want to hear yours. See if any of these apply to you not passing along pain. He goes, I believe if we're honest with the people in our lives, it would kill them. They aren't ready for this level of pain. This especially applies to family members and others who care a little more deeply. They want us to be well, and they hate that we hurt. Some of them wish they could do more to help us and the fact that they can't hurts. And this kind of ties in recently, you know, with the article I mentioned, when it was putting the paper, I got a like a PDF copy of it that you can find on spondypodcast.com and my stepmom sent it out to some family members. And when my aunt replied to my stepmom she wrote, we knew he was hurting, but we never knew to the extent of it, he hides it so well. We never knew all the stuff he was going through and they shouldn't know all the things I mean, you know, I don't go around and share with everybody unless they ask if somebody asked me, you know, something specific, how was your hip replacement? How would you know? How is your back, I'm gonna probably go into a little more detail. But that's just me. You may not be comfortable doing that. And, and I can certainly appreciate that and, you know, you do what's best for you. So Jed goes on and says, I'm not honest with my parents about my health, they have their own medical issues, and they don't need to be worrying about me as well. Saying I'm fine, is my way of helping them keep things off their plate is not our friends and families fault that we are in pain, why make them feel it? Like it is? Well, I agree and disagree with that to it to a degree. Now, that doesn't mean that in this example of a parents, that you go over and just dump on them. I go over and ask my parents, how are you doing medically What's going on? You got any doctor's appointments? You know, I I want to be aware of what they're going through. I want to be aware of if there's an issue, if they'll tell me, sometimes they don't. And so sometimes you have to make some inferences and make some guesses as to what they're up to. And if they then in turn, ask how I'm doing. I may say, last couple days have been real rough, my back's been killing me or this or that and you just kind of deal with it and take it as it is, you know, I, I've had the communication with one of my parents before about my house, it's not dirty. But there are some stacks of papers around, there's some clutter, and that I know drives him nuts. But guess what, that's me. I don't have the energy all day long to spend it, picking stuff up and try to do the other things I want to get done. So I have to pick and choose the battles of what gets taken care of around the house. And if they don't like it, again, it's not dirty. It's just some stacked up papers that I eventually get to and, and move on. So it's just one of the ways of dealing with it, but I don't try to hide from anybody what what I'm going through. This is a big one though he Jed continues and he says, I just don't have the energy. From my experience. Most people I'm honest with don't want any follow up information. They hear I heard, and they say hope you feel better and move on. However, from time to time, someone wants to know more and after that, they have follow up questions, and I don't have the strength to give all the answers. So somebody might say, Me: You know Ankylosing Spondylitis is a form of arthritis. Them: Is it like rheumatoid arthritis? Me: Kinda, but a little different. And on the questions go until you feel like you should be paid for the med school level explanation you're giving. Well, again, that's where I agree to disagree to it to a extent because there's such a limited number of people in the United States that deal with ankylosing spondylitis. It's not something that is on everybody's radar. They don't know what it is. Sometimes you've got to give them a little bit of information to kind of bring them up to speed. That no, it's not rheumatoid arthritis, it's not osteoarthritis. Those are damaging in their own ways, but they're not ankylosing spondylitis. And the name doesn't help out because we know what it is. But it doesn't tie into like, it doesn't say arthritis in it. But that's because it's more than just arthritis. So, the name can be confusing that the level of information we provide may not always be the amount that somebody needs to comprehend. And on the other end, the person that needs to comprehend it may not really be in a position or have a desire to comprehend. So they just kind of Yeah, whatever and move on. So again, it's where are you going to use your energy in any given day that best helps you that's best for you. He continues, and you might not have all the answers or the ability to stand there as long as they are wanting you to. And that's a big deal. Like, I can't stand very long. So if I meet somebody in a grocery store where I can lean on the cart, fine, no problem. If I'm out on my cane, I've developed like a great little elevator speech, because you got about three minutes before I gotta get going and move to keep moving because I can't just stand there, unless I can find something to sit down on. And then he goes on. I'm all for spreading the word about AS, but sometimes I'm fine, is all I can muster. And again, if that's you, and I'm fine is the best you want to give and can give, hey, that's there's nothing wrong with that. That’s entirely up to you and you give of yourself as much as you want or feel that you can. We're all different and we all have different things we want on any given day, not wanting to be minimized. Jed writes, AS is a very serious condition. So when someone takes your symptoms and tries to treat them like something they're not, it can be quite helpful. He writes, have you tried a vegan diet? Ice and rest do wonders for me? Have you tried and then insert any herbal remedy here. While we are all getting older. He says that last one makes me read. On a side note, I once had a doctor say, we are all getting older, you're just getting older, a little faster than most. He says that's still my favorite comment. At least he gets it. I did numerous episodes that are really good to share with your family if they're just maybe not getting it not understanding it. I've said this in the past that a lot of times, if your spouse or significant other, if they hear you continue to talk about something, they tend to be a little more dismissive of it at times, not exactly the right way to handle it, but that tends to happen quite a bit. But if they hear somebody else talk about it, I believe that that lets them if they listen, it lets them then turn and look at you in a real light. Go on. I'm hearing this person say that they're going through this, this and this. Do you experience this? Let them start to ask you in their understanding, hopefully becomes better. So I've done a number of episodes that you can access to share with your family. I have a link to a collection of episodes down below. But there's ones like, Episode 41: An open letter to my family and friends. Episode 29: Pet peeves heard about Ankylosing Spondylitis, in Episode 28:Five things. I'm tired of hearing about Ankylosing Spondylitis. And then finally, Episode 13: 10 things not to say to someone with Ankylosing Spondylitis. So in the shownotes, I'll have a link to that collection of episodes and you can just share that with anybody and they'll get all four or five of those episodes right off the bat and be able to listen to them kind of just in a chunk, and maybe get a better idea of what you're dealing with on any given day. So Jed continues on with the article. But with those lines, all they're trying to do is minimize and simplify our condition. They may want to legitimately help us. However, they aren't willing to put in the effort. vegan diets and herbal remedies might have helped them or someone they knew with their energy level or sleep. Maybe it even helped with their pain. But as of right now, Ankylosing Spondylitis does not have a cure. And that is what they're looking for a one step and done solution, believe me, if as could be cured with vegetables, I think we might have heard about it. Jed continues on with this section. Quite frankly, I just don't trust you. There are people in our lives who we just don't trust with our condition. Oftentimes, it's a boss supervisor, or the nosy co-worker in the break room. The people who can't handle our reality or might use it for nefarious purposes. Now that I have accommodations under the ADA, I am out about my conditioned with my supervisors. However, that still doesn't mean I'm going to give them every bit of information about how my day is going. And the nosy co-worker. Yeah, right I really don't care, who knows about my abs. But I also don't want to be the subject of gossip. Those are two different things. Well, I no longer am in the workforce. And so I don't worry about co-workers or anything of that nature. I can remember back to times where, before I had gone into under FMLA, with my hip replacements, I was kind of, you know, I would have people ask me how I was doing and they could tell I was in pain and that something was off, but I was real careful about what I said to anybody. And it wasn't until after my hip replacements, when I was on crutches for what ended up being a couple years that I couldn't really hide what that something was going on. Well, there are some workplace accommodations, at least here in the states that were made for me. I'm not sure how anybody else around the world would handle it. Everybody's got different laws and different regulations. So you have to address that or approach it in the way that that is best for you. And then he continues on, you know, try to be yourself. Now that I've laid out the most popular reasons for people telling you are fine. When you are most certainly not going to turn the tables just a little while you are in your full right to share whatever you want. I encourage you to be true to yourself. Your AS life is your life, and you shouldn't censor yourself for the benefit of others. If you give someone the full story about all your pain, appointments, struggles and relationship stresses, and they can't handle it. Do you know whose problem that is? Not yours. Let them be the ones to feel uncomfortable for a change. You are an important person and you deserve people's attention. The fact that someone wants might not have the best reaction doesn't mean you shouldn't share. It actually means you should share more. You are the forefront of the information on movement someday. When Ankylosing Spondylitis is a household name, you'll be part of the reason that happened. And that's very true. Again, we are our own best advocates, whether that be with the doctor as you push for better diagnosis, a diagnosis, better medications, better treatment options, you are the one that has to best approach that and deal with it. And you have to be the one that pushes to always have your best interests at heart. When you're dealing with family, friends, spouses. You have to give them enough information to understand what's going on, but also not to hold that against you or to disregard what you're going through. You are the one that has to always be your best advocate with everybody. And as a side note to that, I did an episode at the end of March episode 43, where I interviewed James Allen, and he developed an app called chronic insights. And I'll have a link to that episode in the show notes. But if you go out to I think at the time, it was only available on the apple platform, but check if you have a Google or an Android phone check to see if it's out there. The app is called chronic insights. And he's building this app up. And right now it's focusing on helping you as an Ankylosing Spondylitis patient, track your conditions on a daily basis. So the app is being designed. James has Ankylosing Spondylitis, and the app is designed for people with Ankylosing Spondylitis at this time. He will be incorporating some other elements into it as he builds the robustness of the app up. But I wanted to let you know that I saw some changes come along some updates as he continues to work on that. So with that said, I hope everybody has a fantastic day. Please do me the honor of going over to spondypodcast.com, signing up for the newsletter. And then if you're so inclined, take a look around. I've got options for picking up a T-shirt there or a sweatshirt; you know a number of different things. So, thank you again. I look forward to hearing from you. Please don't hesitate to go out and contact me through Facebook or Instagram. I'll have the links in the show notes. Take care and have a wonderful week.
Helping others understand Ankylosing Spondylitis - https://player.captivate.fm/collection/9f3e0f6c-7c48-4c1f-9b23-82821fc6bdd3
Episode 43: Interview with James Allen, developer of Chronic Insights app (to track your AS symptoms) - https://player.captivate.fm/episode/9b41f5a0-55c9-4fe6-9ec4-4759a2296f50
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