March 1, 2020

7 Steps to Prepare for Rheumatologist Visit

7 Steps to Prepare for Rheumatologist Visit

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope this episode finds everybody doing fantastic. I have a huge favor to ask of everybody listening, it doesn't matter where you're at in the world, if you would go to spondypodcast.com and sign up for The Ankylosing Spondylitis Newsletter, and kind of poke around the site and take a look at it, I would really appreciate it. If you have any feedback, use the Contact page to shoot me back any feedback on the web page and tell me what you think what you'd like to see, you know, just what can I do to make it better for everybody. And then, if you are an Apple user, please go out to the iTunes and hit subscribe to the podcast so it gets delivered to you automatically. That really helps. Because the more subscribers that Apple sees for a podcast, then it turns around and shows that to more people. So the more people that subscribe, the better even if you listen on Spotify, if you're still an iPhone user, or any of the other podcast players out there, and you still happen to use it on iPhone, or computer, Mac, whatever, go out to iTunes, subscribe to the show. It just helps, you know, become better, accessible, better visible to everybody else that may be looking for something like this, I would really appreciate it. And if you can leave a review while you're out there, I love it. Once I get them, I'll read them on air and if you put your name in there or give a review, and then shoot me a message through the Contact page on the website and tell me what your screen name is, and that you want me to use your real name. I'll do that too. So whatever works, I'd love to give you credit for the reviews that you leave. 

So let's jump right into this week's episode with the Question of the Week. I happen to come across an item on one of the Facebook forums and it was do doctors take kickbacks? Well, the general answer that is Know. Now before you go blowing up my contact page, let me tell you why I say no. The reason is, is because kickbacks by themselves are illegal. A kickback is a payment of funds negotiated up front, usually for some certain type of treatment/service. So, no, there are no kickbacks in the medical field. But what we've all seen when we've gone into doctors offices is that sales rep come in with the lunches. Heck, with my general practitioner in Texas one time we were having an appointment, and he said, “Hey, have you eaten?” And I said, “No why?”. He goes, come on, let's keep talking about your treatment plan and it was when I was getting ready to apply for disability. And he said, Let's go grab a bite to eat, we'll talk about disability. And I said, Fine, let's do it. So we went down and everybody all the employees had already eaten so him and I just sat there and grabbed a bite in the break room and and talked about how to handle the disability application procedure. So that type of lunch happens a lot. But that's not considered a kickback. It's considered a business lunch and that happens in not just the medical field that happens at so many businesses. When I was in the brokerage field, both on the selling side and the wholesaling side, there was lunches, dinners, entertainment flying all over the place. So it's not just something strictly found on the doctor side, and I honestly don't have any problem with it. You know, doctor wants to bring in, that's fine. When my first child was born, she had an issue with reflux, and there was a special type of formula that we had to get for her to drink. This stuff was expensive and this is like 18 years ago. I think that seems to me that stuff was $35 a can. And when I went to the appointment with my now ex wife, we were sitting at the baby doctor's office, and I mentioned something about man, this stuff's expensive. Is there any type of alternatives to it? He said, unfortunately, there's not. Just as he said that, I heard him yell, hey, And I thought he was yelling at me and a head popped around the corner of the office. And he looked at me and he says, this is the sales rep for Enfamil. And then he looked at the rep. He says, Do you have any of ABC, whatever the formula was in your, you know, in your car, the guy says, Yeah, I think I got about a case of it and the doctor looked at the rep and says give all those cans to this guy and you can bring back more when you come through again. And then he looked at me says, Go with him, make sure he gives it all to you. So I felt kind of bad, but I went out there. And he happened to have a bag that said, Enfamil on it, you know, like, what you use carry groceries, and sure enough, he had 11 cans of that big cans and he gave me all 11 cans. He goes, the doctor must like you to do this. I started laughing, I says, and he must not like you to make you do this. And so we kind of joked about it. But anyway, those type of things, I'm sure that got written up somewhere as a reportable event. Well, maybe not 18 years ago, because I don't think it was reportable at that time, but it If it was done now, I'll bet you that got wrote up, you know, that type of event would get written up to be reported back as a gift or fee spent at that particular office. So, again, are there kickbacks? I think from big pharmaceutical companies, there's probably not there's so much scrutiny on them that you know, they they can't take the chance. Now other doctors, they may get a speaking fee, get I really have no problem with that. You know, my doctor that diagnosed me when I was first diagnosed in 1984. I looked him up on the, there's a website, you can look up payments to doctors, and I'll have a link to it in the show notes. And he got about $240,000 in 2018 and half of that was speaking fees. I have no problem with that. I don't think that influences his medication, prescription recommendations, because I noticed that the prescription that he recommended to me was way way down there on the list of companies that you know, recommended or gave, meals and all that stuff to them. So I don't think it's nefarious as some of the people seem to think it was on the Facebook post. And you know, you do go into a doctor's office, one person made a comment that doctors and I didn't look, I think they were the United States, but they've made a comment that doctors weren't even allowed to set except pens and paper, you know, from sales reps. And so I started looking around a little bit and I said, You know what, I found that that's not actually correct. There's a website MD links calm, and it says the physicians guide to acceptable pharma swag. And it goes on talking about gifts should primarily be beneficial to patients and should not be too pricey. You know, things like come to a seminar on these latest ways of treating ankylosing spondylitis will provide you a textbook about the seminar and lunch. You know, that's kind of what they're talking about. But they said, cash payments are not permitted. Individual gifts related to a physician's work, such as pens and notepads are miserable. And I don't know about you, I've been to the doctors offices quite a bit and saw the, you know, pick a drug name on a pen. And their their little cup of pens at the front is filled with them from every different type of drug rep when they come in and drop off five or 610 20 pens, whatever it is. So, I didn't think that sounded right when I read that they weren't allowed to take pens and paper that isn't acceptable gift, and that's from May of 2019. And I'll have a link to the the thing physicians guide to acceptable pharma swag. So, with that put to bed, kinda, 

Let's jump off to this week's main discussion is Seven Steps to Prepare for Your Next Rheumatology Visit. You know, I came across this article in health line and I'll have a link to it below. And I thought it really gave a good outline for prepping for rheumatologist visit especially if it's a new rheumatologist you're working with that might not have a lot of medical history or interaction history with you or even if you have a rheumatologist on the fence maybe about if you have AS or not or you're even recently diagnosed with Ankylosing Spondylitis. So I thought these seven steps are really good, really no matter where you sit in your diagnosis for dealing with a rheumatologist to make sure that you both are on the same page. So again, as we know, Ankylosing Spondylitis, it's a form of arthritis and it affects your spine, your hips, you know, pretty much everywhere. And that's the real pain is that in affecting everybody differently; it can make it a very tricky disease to diagnose. And especially as we still deal with the stigma that women don't get it or now it's really not get up but don't get it as much as men do and we're seeing that change. But again, all of this can help put the pieces together to make sure you get the proper diagnosis. So you know, when you go to see this rheumatologist, whether it is your first time or your hundredth time, they're going to critique, Ankylosing Spondylitis and maybe any other diseases that are applicable to their background. So here are the seven steps. 


Number one, Keep a Log of Your Symptoms, you know your rheumatologist, they can't treat you if you go in there, and it's a great day, you're having one of your good days. That's all they know about you. So if you keep a log of how you feel on a day to day basis, and that can be an app, there's some apps out on the at least I know on the Apple App Store. I don't know about the Google Store, I would guess that they're out there as well. And so keep a diary could be paper and pen if you don't want to do it as an app, but which joints hurt. When did the pain start? Where you doing something specific when it started? Or was it just you getting up in the morning and noticing the pain before you had a shower, took your medicine, whatever? What does the pain feel like? Is it sharp? Is it dull, achy, tender, throbbing, you know be very descriptive so that your doctor knows what you're dealing with and then how severe is the pain on a scale of one to 10? You know, if you were there marking everything a 10? Well, is it really a 10? Or are you really in that much pain? If you're really in that much pain, then that is best to explain to the doctor more about what's going on. But if you're just marking everything at 10, because you kind of think it hurts, you know, be be judicious in the use of it, so that your doctor starts to trust your descriptions of what a five is, what an eight is, what a 10 is, how has it changed over the last few days or weeks? If you were to see your doctor on I'm just making something up here, but April 1, and you were feeling fairly decent, April 3, you start to have a flare or what you perceive as a flare or I write us or whatever, how long did it last? How did you treat it? What did you feel like on those days as it went on? Gather all that information. Heck, even with your phone, if you want to keep a video diary, and just video yourself it's probably not going to show as much as writing it down. But videotape along with in their age myself when I say videotape, there's no videotape in the phones. But you know all y'all know what I mean. Those recordings, along with your journal entries can really be helpful and helping to diagnose you. How does the pain impact your daily routine, you know, is the pain. I can remember when I was in college, I got pain so bad and my feet and my shins couldn't walk. I had to take days off of classes, because I physically could not walk to the classes and they were bringing my meals my roommates were bringing my meals up to me because I was in just ungodly amounts of pain from that, then it went away, and I never had that type of pain again. So what was it? Who knows? Did I cause it was it? AS cause? I don't know, could have been I've had other general foot issues that are tied to AS, so it was probably the startups and then last is it kind of discussed? Is it worse when you get up in the morning? We know that with Ankylosing Spondylitis, a lot of our pain shows up in the morning as we get up and move. Some of it tends to work itself out. So, again, document document. And then what do you think you've documented, document some more? Let the doctor know exactly what you're dealing with. Because these, these answers to those questions can help your doctor gauge how well your treatment is working if he or she needs to make changes to your treatment, and just overall what your general quality of life is. And if these are something that the doctor wants to keep it, as notes, at least here in the States (I don't know how others countries work), but at least here in the states that can be entered into your continued treatment that disability wants to see when you went and if you apply for disability. 


Number two, Make a List of Questions for Your Doctor. We've all been in to see the doctor and he's running behind her she's running behind and your point was supposed to be at two and you don't get it there till 45 minuted then doctors, they're trying to get through it as quick as possible because they've got other patients that are backed up, and they know everybody's getting anxious and angry. And when those happen, you could have a doctor that unfortunately, we're all human loses focus might not be listening as closely because they got other things in their mind. So what I encourage you to do is make a list of questions, carry around a small notebook, speak into your phone, write it on the note section of your phone, and write out different things that you might want to talk to your doctor about. Great sample questions which might include, 


·      Do you think I'm on the best treatment for my symptoms? 

·      What kind of improvement should I expect to see with my treatment? What other treatment options are available? 

·      What do you plan to do if I don't see any improvement or if my symptoms get worse? 

·      For how long should I stay on this medication? 

·      Or how long should we give this new medication to to work before we look at something different? 

·      What should I do if I have side effects from my treatment? 

·      Who do I contact? 

·      Could I benefit from seeing any other health care providers, like a physical therapist, pain management, a nutritionist? 


And you can come up with any number of additional options. Remember, make those list of questions for your doctors so that both of you whether you're harried or or short for time, you don't forget what you came there to talk to him about. 


Number three, Bring a List of Your Medications. Keep a running list of all your meds that you take. There's a great app for this on at least, again, I use an iPhone. So there's a great app on this called Medisafe, and I track my meds every day. It's kind of a pain but when I go to the doctor, and I can provide a list of the meds that I took, but the days I might have missed them or what I missed or what I skipped. They really like seeing that, you know, also include any over the counter and decides that you take include if you take any, you know biologics in there, and this thing that I have this app, you can track all of that also include medicines you take to treat any other conditions, if applicable, and any vitamins or herbal supplements that you are part of, you know, your daily medication takes. So write it all down the doses. When you take a morning, evening both and that way, your doctor can review everything this is I probably wouldn't suggest it but you could as you could, I'll put all your medicines in a bag and take them in and let the doctor look at the each individual jars. But it's really not needed anymore with the ability to easily record through apps and just writing on paper what you're taking. 


Number four, Recruit a Friend or Family Member, ask a partner or friend or family member to come with you to an appointment, especially if it's your first or second visit to this rheumatologist. You might be anxious you might be might be covering a lot of things you want to ask for and could be good. Just have somebody drive down there and be there for moral support. You know, they might remember some things. If they see you enough, they might have some things that they've noticed about how you act that you don't even recognize. And they can ask the doctor say, Hey, I see that they're doing this or this, is that something I need to be concerned about? You might not even be aware you're doing it. And it could be very good information for the doctor to know about what you're dealing with. Again, take somebody along if you can.


Number five, Know Which Tests You'll Need. Well, we get a lot of X rays and MRIs and different things like that to look for the bone structure and any fusing that might take place. For some of these tests, you might need to prepare by not eating or drinking for several hours or by removing anything containing metal. Usually, they'll tell you that when you're scheduled for those tests, here's a blood test but it has to be a fasting blood test. Again, try to remember all those as best you can. And from somebody, namely me that's gotten those blood test results. And then all of a sudden realized the next day, you know, I go and have every good intention to go get them done. And the next day or the next day turns the next day. And next thing I know, I'm four months, five months, six months along, and I'm supposed to go see the rheumatologist two or three days and I haven't got my blood work done. So then that's kind of a wasted rheumatology appointment if you don't have it done. So get it done sooner rather than later, don't procrastinate. As a procrastinator, I'm telling you not to procrastinate, you know, and then take it off the metal in the jewelry. When you have the different things done. That's, that's standard, you, they should be able to tell you any of that and then just like I said, put them on your calendar and get them done. 


Number six, Don't Be Hesitant to Expand Your Treatment Discussion. Because of time constraints, you know, doctors might keep the focus of your appointment on medical therapies. But lifestyle changes are a big discussion topic on the different Facebook forums and could be very very beneficial to the treatment of Ankylosing Spondylitis. If you haven't covered these topics with your doctors yet, bring them up in your next appointment. How often should you exercise and what types of workouts are best and safest for you, if you should work out at all? Whether you should use heat or cold? And if so, how often, if you smoke, what methods you can try to help quit. And then finally, you know how to get emotional support if you need it. So maybe the doctor says, why don't you see a therapist or maybe you need to see a psychiatrist, you know, talk with your doctor about any of the issues so that he or she can recommend a holistic treatment path for you. 


Number seven, Discuss Your Emotional Needs. You know, living with painful and chronic conditions can be hard on your mind and body. You know many of us know that don't neglect your emotional state. If your rheumatologist can't address your mental health needs, ask...