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What You're Forgetting To Discuss With Your Doctor
Episode 7111th October 2020 • The Axial Spondyloarthritis Podcast • Jayson Sacco
00:00:00 00:20:31

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Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody has been just having a fantastic week. It's always exciting when I get to bring a new episode out. And this one really I think is going to be real helpful for some folks. But first, before we get to this week's episode, let's take care of a couple of housekeeping things. I need you to help everybody that listens, I really want to see the both Instagram page if you go to, I have a link in the show notes. I hope you go there like the page if you're on Instagram, as well as go to and sign up for the newsletter. I really love seeing those numbers grow and I want to see him keep ratcheting up, keep growing so that I can stay in touch with everybody. 

So onto this week's show, I see a lot of questions across the different Facebook forums, from people that are fairly new to being diagnosed with Ankylosing Spondylitis. Maybe in the last few years, maybe they've moved have not been real diligent about going to a rheumatologist thought, oh, I'll treat it naturally. And just haven't built that rapport up that some people have after dealing with the rheumatologist for over, you know, 10 plus years. So I came across this article, and I thought it would really be helpful. And it's titled Ankylosing Spondylitis doctor discussion guide, what you're forgetting to ask your doctor. And I really thought it covered a lot of good basis, I know what it's like you get in there, you maybe get a little nervous dealing with the doctor dealing with the staff, it's old hat for them, they they deal with the stuff every day, we see them maybe two or three times a year. So it goes back to making sure that you are your best advocate. That's a theme I try to put through this whole podcast show is that the best advocate for treating your disease is going to be you making sure that you give all the proper information to the doctor. And with that said, I wanted to go through the eight things that this article discussed. Now, they make a really good opening. And they say a diagnosis of Ankylosing Spondylitis may leave you feeling overwhelmed and concerned about the future, AS is a chronic or long term form of arthritis that causes inflammation, stiffness, and pain in the joints of your spine. And really the joints of your body, your doctor will go over AS treatment options with you. But they may not address everything you need to know to help you manage your condition. And then they go on to these eight different things. And I really thought they were good included in this. When you go down to the show notes, there is a form that they have in the article that you can print and take to the doctor's appointment with you. And I'll have a link to that. So you can go ahead and and pull it up as a PDF form printed off and take it to the doctor if you'd like.

Number One, What can I do to manage my AS at home? Well, there's so many ways that you can look at your house to make it work better for you. And it's important that you know what your limitations are so that you can best address those, you know, maybe at some thing like vacuuming, maybe instead of the vacuum you have, you need to look at a lighter vacuum, maybe even a robotic vacuum, or vacuuming just sections of the home at a time instead of doing the whole house, maybe do a couple bedrooms or a living room, take a break, you know, whatever needs to be done. But there are different things you can look at. If it's vacuuming causes issues, you know, maybe it's ironing, maybe you need to sit down while you iron. I haven't ironed anything. Gosh knows how long. So that one's kind of out the window. I don't even know if I own an iron. I don't think I do grocery shop online or enlist the help of grocery store clerks to bag and load your groceries. This is a pretty easy one. As we move forward, it's been getting easier and easier with the COVID issues. Again, this is really more applicable the United States. I unfortunately don't know how this works in other countries, but in the United States, you can go right online, order your groceries from some of the major retail chains. And then you pull up, you call them text them, whichever it is and they bring your groceries out, put them in your car, and all you got to do is take them into the house. If you want to go into the store, that's fine. Maybe it's time to use a cart and ride around the store. Don't worry about what other people might think or the looks you might get. You can't be worried about that you've got to worry about what works best for you. I've used carts before. You know as many of you know, I have issues with walking long distances. Lately though, I've been using a regular grocery cart and leaning on it so that I do get some use and exercise of my legs. So it's whatever works best for you. You know, have somebody help you load the groceries in your car, and I invested I'll have a link in it in the show notes in this cart that I use to you know, pull my groceries in the house. I don't carry them in bag by bag, I can't do that. So I put them all in the cart, wheel the cart in and then unload from there. Maybe you have issues with loading and unloading the dishwasher? Well, maybe you need to load it while you're seated. Bring a chair out into the kitchen and load the dishwasher. That way. Maybe you need to empty it while you're sitting down? You know, that's certainly an option. Again, bring a chair out. And it could be where you work with your partner, if you have one, where they put the dishes up in the cupboards, if you empty it and load it, you know, you can figure it out whatever works best for you. And then there are different tools that you can use. And in the shownotes, I'll have a link to both kind of a grippy arm thing I that's a real technical term that I use to put stuff up high, not heavy stuff, I can't hold heavy stuff. But there are certain things if I need to reach it up high, as well as the thing I used to put on socks and it's like $10 -  $11, something like that, that's easily ordered, off of Amazon. So those are just little tools that you can help and little ideas to help you around your house. Again, you have to do what's best for you, I found that I can't dust and once you know, just one whole thing through the whole house. So I dust room by room, and I pick a room to dust each day. So I know I'm going to do that one room, probably going to vacuum it too. And then I'm done for the day with that, and I'll do another one tomorrow. And then finally around the house, make sure you're practicing good posture; make sure that you are sitting up straight one possible laying down flat as much as you can, or as easy as you can. So those are just things make sure you have maybe cushions behind your back, sitting high back chairs at dinner. All of those things can help to contribute to your back, not hunching over Don't slouch when at all possible.

Number Two, Should I quit smoking? The answer is yes, you definitely should quit smoking. If you smoke, you should quit. Research has shown that smoking increases inflammation in your body. So if you're smoking, you're going to have flares and things of that nature or the potential to increase flares, I should say. And it also increases your risk of cancer, heart disease and stroke. It's more difficult to manage multiple chronic conditions. So if you smoke quit, it's a you know, habit that I know for people can be hard to break, I watched my father, not be able to break the habit, but use it all your options that are available to you, for many people their jobs. If you're still working, look at your employee benefits. There are companies that offer smoking cessation programs pay for and pay for some of them. So check into whatever options are available. I know anybody that smokes does not like to be told to quit smoking. But if you smoke quit, it's one of the best things you can do for your life. So and then lastly, ask your doctor about any smoking cessation programs that he or she may have access to. 

Number Three, Is there an AS diet? Well, kind of, is the probably the best answer. I've looked at the no sugar, no grain diet. I had Vinny torta rich, the developer of it on way back on episode three. And I have a link to that in the show notes. There are some key things that you want to look at, namely, cut out processed foods, any type of processed food is going to be terrible for you whether you have a house or not, if you can push to eliminate those. That's fantastic. There are some things like the Autoimmune Protocol Diet, I think something of that nature. And a few other things would have been Mediterranean Diet, Keto Diet. The thing is with ankylosing spondylitis; we all react to things differently. So with that said, What works for one person may not work as well if at all for another, but there are some baseline things that you can consider have plenty of produce, doesn't mean you got to be vegan or vegetarian or anything like that, but have plenty of produce, especially vegetables, high end calcium, to help with preventing osteoporosis, you want high fiber foods, so that can be part of the vegetables you eat. You want lean protein. So you know if you're into hunting, a lot of wild game is very lean. If you're not look for very lean cuts in the store of meat or the cut you get cut a lot of the fat off of them if you can as minimal marbling to some of the meats the cheat as possible. Look at fish, especially fatty fish like salmon. That's a very good thing to add in. If you can have that a couple times a month that only works to better yourself because of the Omega acids and things of that that you find in the fatty fishes nuts if you're not allergic to peanuts or tree nuts like that, look at and some of the nuts I believe it's the rar the nut the better. So if you like salted peanuts would not be a good thing. But raw almonds wood some very limited whole grains This is one thing the article says is talking about whole grains and I really don't agree with him on that. I would say that have them is unlimited amount of in your diet as possible. And the other thing that the article talks about which I found really interesting as I read some of their research is dairy. I don't need a lot of dairy but I had heard that you I do eat I eat cheese. I like cheese. I had heard that dairy itself was an automatic inflammatory issue. But what they say in the article is that dairy falls in the middle of the inflammatory spectrum. Research indicates it may cause inflammation and people allergic to milk. However, it may have anti inflammatory benefits and people without a milk allergy. So what is it? I guess if you don't have a milk allergy, dairy in moderation is probably not a bad thing. So again, ask your doctor if dairy is a good choice for you. And if you're overweight, ask your doctor for a referral to a nutritionist who might be able to help you come up with a healthy eating plan. 

Number Four, What are the best exercises for AS? Well, I would say the best exercises are the ones that you can do. We know regular exercise is critical to managing as if you're sedentary or constantly sitting on the couch that is not good. It allows joints to stiffen and increases your overall level of pain. That type of exercise you do is important though, you've got to do what I say is again, do what your body will let you do avoid any high impact exercise. If it hurts you there are some people that run marathons that have ankylosing spondylitis. If it's not affecting your joints, and you can do it, do it in moderation. I know I said that I say I think they run triathlons. But still, it's a lot of running to do, do what your doctor tells you is best. Some of the key things to do are things like swimming, yoga, I had the two gentlemen from Yoga for AS, Jamie and Jeff. And I will link to that episode in the show notes. They're great. They're yoga instructors and they both have Ankylosing Spondylitis. And their Yoga is designed around helping you to stay mobile and active, I'd encourage you to go to their Yoga for AS follow them, and get active polities gentle walking, and gentle stretching. There are people on I've looked at their pages on Instagram that showed different stretching exercises that they do. And they have Ankylosing Spondylitis. So there are a variety of options that are available to us. We're all at different levels, the stretching, or polities or things like that is not anything that I can do based upon how far I am along the fusion spectrum. But if you are newer to AS, you're newly diagnosed, you don't have a lot of fusion and things of that nature and yours just really getting going along with a good dietary, you know, workup and understanding what you're you should be eating exercise, and the medication could keep you from ever developing as to any real bad, you know, overall condition. So you know, you are in control; you've got to be the best one to tackle it. 

Number Five, Where can I get AS support? AS support is everywhere, it's more available now than it's ever been. Now with the Internet, you can reach out from anywhere and hear from people around the world as to what they're doing to help combat their Ankylosing Spondylitis. So for local, you know, help, you might have a physical therapist. In addition, these are all in addition to your regular primary care physician, you might have a physical therapist, maybe a nutritionist, if you're really looking to lose a lot of weight or some weight. Maybe you have a therapist or mental health professional that can work with you to make sure you don't fall into any type of depression or any anything. You know, it's always good to talk. Maybe it's marriage counseling if you're having issues with a partner or spouse. So just get as much support as you can. And don't hesitate to reach out to the different forums and ask people for help answer questions, things that nature. 

Number Six, does AS cause complications? Boy, can it cause complications, on top of the mental issues, whether it be marriage issues, dating issues, divorce issues, there's the physical issues that we deal with. And we know that inflammation can cause all sorts of complications. And they can be inflammation in the spine, which we know is going to happen with Ankylosing Spondylitis, but it can affect other parts of your body too, and affect your eyes can make it difficult to breathe might be fractures as bones and joints weaken. And it could be heart problems from increased inflammation if it's not addressed, and you're not taking care of it properly with medications to keep the inflammation down. So not everyone that has as will develop some or all of these or any of these complications, really. So ask your doctor, make sure you're keeping an eye on yourself and talk with your doctor about any red flags that may be coming up things that you need to be concerned about, so that you can best address them. It might be exercise, medication, or diet or some combination of all of those that will help you address whatever you're concerned about.

Number Seven, What research is being done on Ankylosing Spondylitis? There's a lot. I did an episode a while back with Dr. Fox from the University of Michigan. And we briefly touched on some of the research being done in the field of spondyloarthritis in general and Ankylosing Spondylitis. And, you know, researchers, there's three genes that researchers have identified that contribute towards Ankylosing Spondylitis. And there's more coming as they as they learn more about this. So they know that, to understand it, researchers are seeking to better understand the following the inflammatory and immune responses of Ankylosing Spondylitis, how environmental factors impact as if there's new therapies can slow or stop spinal fusion. And if the gut microbiome plays a role in the development or progression of AS, again, talk to your doctor if you want to see about getting involved in any type of as research Your doctor may know of studies that are going on that they can put you into get involved with. The other thing you can look at is the Ankylosing Spondylitis, web sites that are specific to each country. In this case in the United States, the spondylitis Association of America has a section that they put up that contains research studies that are taking place, head over to the show notes. I'll have a link to a study that's trying to be conducted on your gut and food and everything that takes place and they're looking for people to sign up for that they want to study how it affects Ankylosing Spondylitis patients. 

Number Eight, What is my outlook? That's really hard to say, because that's entirely dependent upon what you do as your best advocate. In general, for newly diagnosed people with ankylosing spondylitis, the outlook can be fairly good. You know, there are new medications available. There are new medications coming and who knows what the future will hold. And if you are diligent about diet, exercise, and medication, you may have little to no Ankylosing Spondylitis issues, compared to somebody like myself who had no medication available. For the first say, 20 years of Ankylosing Spondylitis the first 15 years, let's say. So, if you're newly diagnosed, make sure as as this whole episode has been about as to be your best advocate, I can't stress that enough, you have more control over the progression of this condition than you might think. And it's up to you to communicate rarely with your doctor, ie to be your best advocate. And then, once the doctor and you have come up with a plan of attack, to follow it, if they tell you to try something, try it. If they bring up a biologic to you, I would encourage you to try it. I know there's a lot of people that say oh, I don't want to deal with biologics, I don't want to take what I'm scared of. You know what, try it. If you have a bad reaction, some people are going to have very bad reactions, that's just part of medication. But that's not standard across the board. So you might have sight injection, rashes bumps, when you put the medication in you, it creates a welt on your leg a little bit, at least on mine, where the medication is, sits there till it absorbs in your system. So there's little things like that that are just normal. But if you have anything that's abnormal, those are where you want to contact your doctor, if you're really afraid of the biologic shot, a lot of our shot forms. If that concerns you, talk with your doctor about taking the first few shots in their office so that you have the full medical staff there that can help you with administering the shot watching. See if there's any site injection reaction spots, any type of allergic reaction, you know, anything. 

So with that said, ultimately, the bottom line is that you are your best advocate. Nobody else is going to fight as hard for you as you are. So don't let fear of the unknown. And learning how to manage your symptoms scare you and let you think, Oh, I'm going to act like a turtle. If I just, I just ignore Ankylosing Spondylitis, it'll go away. It won't, once you have the diagnosis, develop the plan of attack and go after it. And again, with that said, jot down your questions, jot down the notes the doctor says to you so that you have a way to refer back to them. So it's not just based upon your memory and goes in there and start to develop the plan of attack that's going to work best for you. Thank you again, so...