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April 19, 2020

Living with an Ankylosing Spondylitis Diagnosis

Living with an Ankylosing Spondylitis Diagnosis

Hello and welcome to this episode of the Ankylosing Spondylitis Podcast. How's everybody doing yesterday here in the thumb of Michigan for spring, we were getting intermittent snow showers. So that really stinks. I'd love it. If any one of you could send some warm weather this way. I absolutely just enjoy the heck out of that.

With that said, I want to touch base and do a couple housekeeping items. I really could use everybody's help. If they could take a moment to go to the link in the show notes and go to podchaser.com and leave a review for the show. It's a very helpful way for others to find the show, and I would be completely grateful for anybody that did it. So again, it's pod chaser, calm. You can search out The Ankylosing Spondylitis Podcast, and then if you would leave a review, I would really appreciate that. Also, if you go to spondypodcast.com, which is my website for the show.

You can access all the prior episodes, some articles I have out there on different subjects, as well as a link to pod chaser and sign up for the newsletter. I call it the intermittent whenever I feel like sending it out newsletter, I don't send out a ton of them. I think I've sent two this year. So again, I don't send out a ton, but it's a great way for me to keep in touch with everybody and I have different things that come up on occasion to share with everybody. And lastly, in the show notes, you'll find a link to Teespring for the month of April. If you use at the ankylosing spondylitis podcast store in there, you can get 25% off your order by using the keyword April. So again, follow the link that's in the show notes. And I hope to see pictures of people wearing those shirts in different locations. 

Now, onto this week's show. I was on the website ankylosingspondylitis.net, which is a website I talked about in a previous episode looking around for a few things because I've noticed a lot of questions lately about I'm recently diagnosed with Ankylosing Spondylitis. What does this mean to me? These medications scare me. My life is going to end. You know, as I know it, all these different topics came up and I happen to come across an article that was called Living with a Diagnosis of Ankylosing Spondylitis. So I really wanted to kind of run through it. It's not long and related to how my life has gone with this Ankylosing Spondylitis diagnosis. I've been dealing with this for 36 years now since I was officially diagnosed. So let's take a look. Again, it's called Living with a Diagnosis of  Ankylosing Spondylitis. We all know that having a chronic condition like Ankylosing Spondylitis, you know, can impact all of our entire existence, our entire lifestyle that we're used to, well, each of us is going to get a s differently. And you'll see from somebody like Dan Reynolds of the Imagine Dragons up on stage bouncing around look physically fit to somebody like myself who's on a cane hunched over had multiple hip replacements. We both still have Ankylosing Spondylitis. We've just dealt with the diagnosis is different mainly based upon when we were diagnosed and the medications available and what we know about it now versus what we knew about it when I was diagnosed. So there are many aspects of as that, you know, we can't control we can't control how fast the inflammation will take off. And all of us it's different. Mine came on very hard in my hips and my si joints to the point where as I've said, By the time I was 21, I'd had my first hip replacement and by 23, I had had my second hip replacement. That's Island usual there's many of you that will go your entire life with ankylosing spondylitis run, walk normal and never even consider a hip replacement. That's the huge variance. And why if you're new to ankylosing spondylitis, and you come on and ask the question, What am I in for? The only real answer is I don't know. Nobody knows. So that's what makes it so difficult in many cases also for diagnosis. So make sure that once you're diagnosed with Ankylosing Spondylitis, you try to do these few things. Because this may make a huge difference in your outcome of how you end up with Ankylosing Spondylitis. 

Number one, take medications as prescribed. You know, that's really very prevalent right now with this COVID-19. And I see many people say, Well, I stopped it because I was afraid I stopped it because of this. Did your doctor tell you to do that some of the responses are no said well, you really want to discuss that with your doctor because there may not be a reason for you to stop it. There's no real conclusive evidence at this time because of so little being known on COVID-19 that taking a biologic does put you at a greater risk. We don't know it may or may not. So again, when things happen Make sure that you're taking your medications as prescribed, as you and your doctor discuss them. And what they say is the best course of action for you to do when it comes to taking your medications. Don't rely on what you might hear from a Facebook forum or from Twitter or anything like that, do what your doctor tells you. 

Number two, eating healthy foods. Well, that only stands to reason what you put in is what you get out, the better you can do it eating and controlling what you eat. And really limiting things like sugar may have just untold benefits that you experience by limiting these things. Not only sugar, but dairy, possibly gluten, any of these items by limiting or if at all possible, eliminating them from your diet could just make you feel tremendously better. So again, talk with your doctor about this, test it out. Maybe try eliminating sugars and see how you feel eliminating glutens do one at a time don't have to do it all at one time. Just do one at a time and then see how you feel once you eliminate each one for a 30 day period or whatever you decide to test it at. 

Number three, this is also very important. And these are not listed in any particular order. They're all really actually important. But number three, staying active through regular stretching, exercise and physical therapy. If your doctor prescribes physical therapy for you, go do it. Make sure you do your stretching in the mornings in the evenings. And whenever possible, whether you know it's walking, whatever you can do for exercise and to continue to push your body do it our bodies don't like to be static. They don't like to be in one spot all the time is our current environment kind of somewhat forces us to our bodies need to be active as much as possible. So make sure that you are keeping yourself active. 

Number four, making adaptations as needed to your home or work environment to support your body. This could be something like a sit stand desk. It could be something as simple as a different ergonomic type chair, something maybe to rest your legs on while you're at work, or prop your leg, a leg or legs up on while you're at work could be a certain type of recliner or a sit stand type of recliner chair if, depending on your condition, in my case, was something as simple as a $7 sock puller that I ordered off of Amazon that allowed me to pull on my socks without bending over. That was a game changer for me and fairly inexpensive and easy to implement. So we're all going to be different. We're all going to have different needs and different ultimately wants to make our conditions easier on ourselves. So come up with a list of them, ask other people online what they found helpful. Take that and research it and see what's beneficial to you. 

Number five, stop smoking. This one is huge. It's going to improve your overall health. It's going to limit some of your exposures to Various toxins. So talk with your doctor. If you're a smoker, your doctor may be able to prescribe smoking cessation type medications for you, or I think there's patches and all that I'm not a smoker. So I don't know what all the different options are. But I know smoking can cause all sorts of issues. And I would encourage you for your health and your family's health to quit smoking. 

Number six, getting a good night's sleep. Well, we all know that sleep is important because your body needs that rest to recover and recuperate and to give yourself an overall healthy outlook, and for many, including myself, I have sleep apnea, so I'm supposed to put a mask on every night. I don't always do that. I forget some times, and I can notice the next day. If I've worn my mask topics. I have a very hard time when I sit down at my office chair or anything. I almost fall asleep instantly. So make sure if you're having a hard time sleeping in Get a sleep apnea study done. Maybe you need to sit up in a recliner to sleep better. Maybe it's a different mattress, you know, look at the different options that will help you get a better night's sleep so that your body can help to heal and fight the inflammation and allow any medications you're taking to fight the inflammation so that the ankylosing spondylitis doesn't run away on. 

Number seven, recognizing your limitations and honoring them, this one's important. And as you get through and find out how you're doing with ankylosing spondylitis, there may come a time when you're not able to do things that you used to do could be through age could be through just deterioration of joints. Increase in inflammation could be a number of different things. If you can no longer do those things. Understand that it was good. Well, you could do them you're for whatever reason, or whatever part of ankylosing spondylitis is now limiting you from doing these items and come to grips with that. It's it could be very, very challenging. If it's a if it's something like maybe right thing that you love to do, and you no longer can do it. You know, it might take talking with spouse, a therapist, something to come to grips with it. But once you accept what you can and can't do and understand your limitations and honor them and and one way or another, you will be able to move past them. And it may open up doors to allow you to do other things that you would never considered before.

Number eight, managing stress and caring for your mental health. That's a big one stress can really trigger a flare very easy. So if you can control your stress, whether it be through meditation, whether that be through exercise, or some combination of them, I've turned to using meditation. I took a class on transcendental meditation, not saying that's the one you have to take, find what works for you and see if that helps. I was very much a skeptic on how meditation would do anything. I really didn't believe in it until I did it. One I did, I found out that for me, it made a tremendous difference. I'm not as good about doing it as much as I should, I try to do it as often as I can to help control stress, keep my blood pressure down along with the medication that I have for blood pressure. And I think it's a very important tool that all of us can implement in one form or fashion. And there's a number of meditation videos on YouTube that you can access to do it for free. 

Finally, number nine, ask for help when you need it. This is also a big one and can go along with recognizing your limitations and honoring them, there's going to come a time when you're going to need help with something that you may be used to do without even giving it a second thought that can be very hard to accept. It was for me, it took me a long time to understand that there were things I just couldn't do as easy anymore. And when people offered to help, it wasn't out of looking down on me it was out of a desire to help me and when at all possible. So I encourage you too, as you develop and your Ankylosing Spondylitis moves along, look at those items that you can't do anymore. If somebody offers you to help them, please let them that's something that they can help you with. It's easy for them to do accept it and be thankful that you have somebody that cares enough to actually help you out. 

So overall, those nine things are some things that you can very easily implement into your lifestyle. And hopefully, once you've implemented some or all of them, it will better not only your overall lifestyle but your lifestyle with Ankylosing Spondylitis. And allow you to see the Ankylosing Spondylitis doesn't have to be a mental and or physical death of you a death of your lifestyle that you can overcome. You can adapt and move forward and lead a healthy productive life with Ankylosing Spondylitis and be the best that you can be. So again, thank you everybody so much for listening. I really appreciate it. I hope everybody has a wonderful day and I look forward to talking to you soon.

Link to referenced article - https://ankylosingspondylitis.net/living-with/

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