Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Again, the show continues to grow by leaps and bounds and we've now been listened to in 54 different countries. I bring that up and tell you all just to share it with you and let you know that this community of us, all of us with Ankylosing Spondylitis, it's huge and it reaches across the globe. So it's really exciting to see when we get a new country come in and listeners from those countries and then sometimes I even get emails from some of those in different countries. It's really great to see that even though we're spread around the globe. We all come together with this thing called Ankylosing Spondylitis and can relate to it. It really makes it seem like it's not such a small thing that that were so alone. That was really fantastic. And let's jump into the question of the week. This week. I saw a person thinking or discussing that they were having a lot of issues with dealing with the diagnosis of Ankylosing Spondylitis. We've all been there; all of us have processed it in a different way. This particular person was very blunt in their writing, which was very good to see, it meant that they had been thinking about it a lot would be my laypersons opinion, they were upset, they were unhappy with realizing that certain things they used to do with ease, they could not do at least to the same standard anymore. And again, I think we've all been there. I know I have, I look at different things. You know, I used to be able to do this so easy. Now it takes me a Herculean effort to take out the trash, something as mundane as taking out the trash. I am on a cane. I have to do everything one handed because I always have to use that cane to walk and that really presents challenges like even something as simple as I decided I needed to clean off my kitchen counters the other day and just you know, do a standard cleaning and wipe everything down. It takes forever because I can't move everything with just here. I'm playing with this hand, put it over here. I've got a good move everything one handed. And it was really interesting to me that I realized it took me almost two hours to clean the kitchen countertops, not because they were dirty, but because it took me that long just to move stuff clean, wipe it all down and then put everything back and I said that probably would have taken an able bodied person 45 minutes tops to get everything done. So I was certainly able to relate to what she was saying and I know in reading from other posts of other folks that get out there and say, Look, I I'm upset about this or upset about that or I missing doing this or I'm missing doing that, whatever that might be. And it's really just something I think that we kind of have to come to grips with Ankylosing Spondylitis. We have to like it. You can fight it to a degree. Some of us are less affected by as than others but are affected differently. Again, everybody's going to have to go through this process as they kind of grieve for what they used to be able to do. Look forward to what they can do, and how best they can do it. I want everybody to be safe, happy. And it's never good having to deal with this, we have a unique position and that we're dealt a poor hand so to speak, but you have to make the best of it. There are people that care about you want you to be safe, wants you to be happy. So I would encourage you to please reach out to anybody, if you're having a down day, build that support network. We've all been there and we all look to be there for each other. So again, I hope everybody is able to best process this as they deal with AS and what they can and can't do. Get a good therapist if you need assistance that way. There's nothing wrong with that. Talk to priests, Pastor, Minister, therapist, whoever best fits your support network of who's going to be able to be there for you. Some times it's best if you find somebody that has AS as well, because we can understand somebody times, it's just best to have somebody that can lend an ear and listen. So whatever that is, doesn’t hesitate to reach out to them and look forward to hearing that everybody is always doing well and is best able to come to grips with the position that as puts them in and what they can and can't do.
Now this part of the show is going to really kind of lean heavily towards the American side of medicine, because obviously, I'm in the United States. So I don't understand how the medical systems work in European medical systems or every country has their own thing. So you kind of have to take some of this and apply it to your specific country you live in but when you were diagnosed, how did you put a medical team together? Were you referred to a rheumatologist from your primary care physician? Did you seek out a rheumatologist on your own? How did you decide to go and put this whole team together to help you treat Ankylosing Spondylitis? In my case, my team is my primary care physician, my rheumatologist, an ophthalmologist, and then an orthopedic surgeon. Since I've had multiple hip replacements, yours is probably going to be different unless you had all the same items that I've had. But how did you do that?
Now, stay tuned at the end of the episode, I'm going to be giving away three Kindle versions of Ricky White's book Taking Charge: Making Your Healthcare Appointments Work for You, and one audible version of it. So that's in total four items, and I'll be giving them away. Stay tuned at the end of the show and I'll tell you how to enter to win one of those when you look at putting together your medical team.
How do you do that? You know, I can tell you how I did it. Mine was really just blind luck. There was no thought process behind it besides, okay, this is where they told me to go. When I was diagnosed. I was only 14 my primary care doctor sent me to a rheumatologist about 75 miles away because that was the closest rheumatologist there was none anywhere closer so what down and after working with him for a little bit He determined that I had Ankylosing Spondylitis and he worked with me from ages 14 to 21. By the time I was 21, I had damaged my hip and brought into the mix was now an orthopedic surgeon since I was going to need a hip replacement. My rheumatologist said, “I'll tell you there's two places to go. One was in Cleveland, Ohio and the other was in Port Huron, Michigan.” Since I lived right there in Port Huron, or near it, that was kind of a no brainer. He referred me to an orthopedic surgeon there, and that's who did both my left and right hip replacement when I was 21 and then 23. It really hasn't been a lot of science in my part, more luck, but everybody's different.
The quality of rheumatologists that you run across apparently is quite different. Again, by the time I moved around every time I used a rheumatologist, it was a referral from my primary care physician. One of the things with the book that I'll be giving away the Kindle book is Rick also has Ankylosing Spondylitis. He wrote this book because he had been in the healthcare field in England. In his book Taking Charge, he wrote about, you know, do you often feel anxious or nervous before your healthcare appointments? Do you leave your healthcare appointments, feeling frustrated, like nobody's listening to you? All of these things are going to be covered in Taking Charge. So it's really what I consider a great book and filled with a lot of good information.
I found an article called finding a good rheumatologist on ankylosingspondylitis.net (I will have a link to it in the show notes). And I thought you know, we all need to have rheumatologists. I have seen several spots were on different forums, everybody's kind of listed their rheumatologists and the locations to try and help others fine good rheumatologists verse maybe ones that others didn't have such a good interaction with.
How can a rheumatologist help you, given that all of us that have Ankylosing Spondylitis or any type of rheumatic disease can experience joint damage that cannot be repaired in some cases or worst case scenario the joint has to be replaced like a hip, knee, you know, shoulder whatever, it's very important to get diagnosed and treated as soon as possible to minimize any of the damage to the joints. Your primary care physician is going to do as much as he or she can before they need to put you over to somebody with a specialty like rheumatology and one thing to remember, obviously, is when you start seeing a rheumatologist, that doesn't mean you leave your primary care physician. I think most of us know that, but those two should work in a great relationship with each other. I find it fantastic, now when I go to my primary care physician, he can see all the notes put in by my rheumatologist, put in by my urologist, put in by everybody, they use the same system that feeds notes. Part of its to help keep people from medication shopping, but the other thing is so that they don't have to rely on my memory of what went on an appointment. They can read the doctor's notes and say, Okay, here's what went on. So I can do this or that to help counter this help make it better, whatever the treatment is that you're going to need. So that team approaches is really the most effective way of making sure that all these symptoms that we deal with from Ankylosing Spondylitis, which are very complex, are treated to the best of what we as a patient need.
You know, one thing you look at is how a rheumatologist trained. My rheumatologist that I saw for 30 plus years, he always had a whole series of doctors coming through. So whenever I saw him, there were three, four or five other doctors in training that were with him. I always told those other doctors as we're standing I said, ‘if you take nothing more away from this rheumatology internship, take away the way Dr. Morton deals with the patients. He never forgets that it's a person that could be scared, nervous, whatever the case is just diagnosed upset.’ Dr. Martin never forgot that, and that was one of the most amazing things about him as a rheumatologist is that he understood he was dealing with an individual person and always interacted with you as such. It wasn't just three, four minutes of talking and boom, you're gone. So that's one thing I told all the other doctors really pay attention to his, what we call bedside manner.
All rheumatologists must finish four years of medical school, which any doctor will do, and then three years of residency in either internal medicine or pediatrics. Once they've done that they must complete then a two or three year rheumatology fellowship program and pass a test for official certification. While they're doing this many rheumatologists see patients and also conduct clinical research. So there's a number of ways that they can go into rheumatology. They might never deal with patients. They might just stay on the research side, go to work for a drug company or any type of research area.
As I've said before, how do you start to find a good rheumatologist? Start with your primary care physician, they're going to know the local rheumatologist and again, depending on your area where I'm at, there's really only one rheumatologist within a 20 mile radius of either side of me so there wasn't a whole lot of choice if I wanted to stay somewhat local. If I want to drive down to any of the suburbs of the Detroit area, I can, everybody's going to be different. So talk with your primary care physician, they're going to know who the rheumatologists are, they're going to have working relationships with some and that may work out to be better for you. That's where you're going to then start to interview these doctors to see who you best fit with. But again, start with your primary care physician.
Also, what are characteristics of a good rheumatologist? Not just Ankylosing Spondylitis, but any of these autoimmune or rheumatic diseases are generally rare, can have as you know, unpredictable symptoms and since new medicines are always coming out, one of the things you want to know with your rheumatologist is are they familiar with the latest research and standards of care? Are they dead set in their ways? Because if they are, they might not be the best for you if they're not willing to look at new treatments and new treatment regimes that could work best for Ankylosing Spondylitis. The diseases themselves are complex and a good rheumatologist you know should be able to tolerate uncertainty, be open to collaboration with other doctors and I'd be more than willing to say this is what I understand this is what I think. But we might need a specialist to work with you and be willing to refer you over to that. So make sure and again, every country is going to be different but make sure that rheumatologist is willing to bring in others, whether it be you're having iritis issues and they want to refer you to an ophthalmologist or whatever doctor, you know, urology items, whatever. They're willing to work with other doctors to make sure that you are seeing holistically for your disease.
And also, you know, lastly, trust your instincts. You know, when you're talking with the Doctor, do they listen well? Do they make eye contact and look up from their charts? Are they accessible? Is there time in their schedule? Or, you know, are you booking out 6, 8, 10 months because you can't get in before that? Does their staff return phone calls? Is the doctor patient with you while working through options and test to come up with a correct diagnosis because again, everybody's different? There's no cookie cutter approach, treating Ankylosing Spondylitis and are they focused on your quality of life? Do they look at you and say, here's what you're dealing with? How are we going to get you the best quality of life so that you’re AS is minimized as much as possible? You know, those are just a few of the things that you can look at. They all tie in together.
And again, when it comes down to trust your instincts, you're going to know when you're talking with the doctor, whether him or her is somebody you think you can work with long term and that you think is going to have your best interest at heart. Also look in the show notes. I'm going to have a link to four different articles on choosing or picking rheumatologists that aren't from different sources. So those might be helpful to you as you go forward and decide is this rheumatologist you have the best for you again Also, don't hesitate to check out the website ankylosingspondylitis.net.
And now how to win a Kindle copy of Taking Charge or the audible version. Those will be given out as USA Kindle or the audible. So if you don't use those particular items, you'll want to download the app if you win. So how do you win one or two ways you can be entered, go and like the Instagram page as_podcast on Instagram, and then take a screenshot showing me that you've liked it and send it via direct message on Instagram or show me that you've listened to the show by taking a screenshot of you listening to it on your phone or take a picture of your computer page whatever. However, you can best do that, send it to The Ankylosing Spondylitis Podcast Facebook page, to the Instagram page or to me directly at firstname.lastname@example.org again, for spellings and everything look in the show notes and I'll have it all there. Do one of those items, get it to me and I want to put them all in a pot and draw some names and send you off codes to download these books for free or to get the audible for it. So I hope y'all have a great day and take care and good Luck as you work through this disease called Ankylosing Spondylitis.
1. What is a Rheumatologist. American College of Rheumatology. Updated June 2018. Available at: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Health-Care-Team/What-is-a-Rheumatologist Accessed April 10, 2019.
2. Sara Altschul. How I Chose My Rheumatologist: Smart Tips From People Living With Arthritis. Everyday Health. Updated February 19, 2016. Available at: https://www.everydayhealth.com/rheumatoid-arthritis/treatment/how-to-choose-rheumatologist/ Accessed April 10, 2019.
3. Making the Most of Your Relationship With Your Rheumatologist. AbbVie, Inc. July 2015. Available at: https://www.ra.com/Content/pdf/14068_RAEnhancements_SeeingaRheumBrochure_R2-62515-yeo.pdf Accessed April 10, 2019.
4. Elaine Howley. How Can I Find the Best Rheumatologist? US News and World Report. July 11, 2018. Available at: https://health.usnews.com/health-care/patient-advice/articles/how-can-i-find-the-best-rheumatologist Accessed April 10, 2019.