How to Exercise with Rheumatoid Arthritis: Randi’s Story

On Episode 9 of the Arthritis Life Podcast, Randi Blackmon, a personal trainer and chiropractic student who’s lived with rheumatoid arthritis (RA) for 7 years, shares her best tips for exercise with RA. Scroll down for a full episode transcript below!

She also sheds light on the unique challenges people of color face in the healthcare system.

Randi and Cheryl dive deep into Randi’s diagnosis journey, her career as a track and field athlete at the University of Alabama, her best advice for newly diagnosed patients, her tips for exercise with RA, and even some dating and relationship advice. 

Randi was diagnosed with Rheumatoid Arthritis at the age of 16 after 6 years of trying to find an answer. Randi says: “My journey with RA has not always been easy, but it has been rewarding. I have had to learn what works best for me in controlling my RA because of course not everyone’s RA is the same. I manage my RA with exercise, a moderation diet, a medication, chiropractic care, and plenty of rest. Oddly, I am thankful to have been diagnosed with RA at 16 because I have become the best version of myself as a result of it.”

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare she say) FUN patient education and self-management resources. 

Links to things discussed in the podcast episode:

• Randi’s Instagram
• Randi’s Youtube Channel
• Women’s Health Magazine article about Randi’s story
• Statistics about racial disparities in healthcare, chronic pain and rheumatology
• Free Handout: Cheryl’s Master Checklist for Managing RA
• Cheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
• This episode is brought to you by the Beginner’s Guide to Life with Rheumatoid Arthritis, an intensive online program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.

Here’s the show breakdown:

• 01:00 – Randi’s diagnosis story
• 4:35 – What it was like to be a college athlete with RA, doing the triple jump in track and field.
• 8:20 – Randi’s sports injury misdiagnosis.
• 10:20 – Why Randi pursued her personal trainer certification.
• 12:54 – Why Randi pursued Chiropractic medicine as her career.
• 18:00 – Randi’s tips for how to exercise with RA: resistance training, muscle building, cardio and more. 
• 23:10 – How Randi and Cheryl make cardiovascular exercise fun!
• 28:45 –   Randi’s advice for newly diagnosed patients with RA (hint: there are many sports metaphors in this advice!). 
• 32:45 – Discussion about combining “natural” approaches for RA versus Western medicine, and how to find common ground and balance.
• 35:00 – Randi’s tips on how to build a good relationship with your provider.
• 39:38 – How healthcare quality can differ for people of color. 
• 45:46 – How Randi and Cheryl learned not to underreport pain to their providers.
• 48:00 – Randi’s experience dating with RA and love story with her fiance.
• 55:15 – Bonus content: Cheryl’s favorite dance routine she learned in the 1990s from MTV videos

Medical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Full episode transcript:

Episode 9 How To Exercise With RA Arthritis Life

Hi everybody! I am talking with Randi who has been a college athlete and a personal trainer, and is now in school to become a chiropractor. She is going to tell us all about her own personal journey of being an African-American woman in the medical system. She is also going to tell us all about exercise.

Randi has had so many different experiences over the years – managing her own RA while exercising plus helping others. So I’m really excited. So let’s go! 

Hi, my name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, I’m also a mom, teacher and occupational therapist.

I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say you don’t look sick, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness. No topic will be off limits here. I will also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there and ready to figure out how to manage your life with arthritis. Let’s get started. 

Cheryl:  Hi, Randi! I’m so happy to be here. Can you tell me a little bit about your diagnosis journey? 

Randi: So let’s see, my journey, of course, with many people that have chronic illnesses, it took a while. It definitely wasn’t something that was quick. I noticed my symptoms actually at age 10, that’s when it started when I was in gymnastics. And, we really just thought they were pains because gymnastics is such a demanding sport and you’re always pounding. Right, just beating on your joints.

So my coaches, my parents, my doctors that I saw all the time, they thought it was because I was in such a high impact sport. Eventually, it got to the point where I had to walk away from gymnastics because I was getting injured and I wasn’t healing like everyone else was from their injuries. So I had to walk away from that. 

I then started playing basketball and running track. My first year of basketball, of course, when you’re playing basketball, you’re always jamming your fingers, when trying to catch the ball, you’re jamming them. That just comes with the game. But, there were times where I would jam them and I realized that they were still jammed for long periods of time after or they seemed jammed and I hadn’t even jammed them. I was talking to my parents and I told them I didn’t know what was going on with my hands. This is just really weird. 

It got to the point that when I tried to open doors, I couldn’t. I couldn’t open doors or turn door knobs. And, so at that point, my mom was like, let’s go and find some answers because when I was in gymnastics, we would still go to doctors. Typically, we’d go to orthopedic doctors and they thought it was just tendonitis. They’d tell me to take ibuprofen, two times a day and go about your day.

I did that for six years just thinking it was tendonitis. So, my hands were jammed and about this time, I was in my sophomore year of high school. My mom said that this was getting serious, so let’s go ahead and start finding some specialists and going on about that process. That actually took us about six months.

I don’t remember the exact number of specialists we saw, but it was a lot. At first, everyone just saw my hand x-rays. I had MRIs done and they thought that it was normal. I was passing orthopedic tests so nothing was giving them any indication that anything was wrong. It wasn’t until I went to a hand specialist who actually saw when I broke my thumb, when I was in gymnastics. His wife, who was not a doctor, was in the room at the time and she told me that when she was younger, she had rheumatoid arthritis. Her husband was like, Oh yeah, that is a thing.

So, I mean, since they didn’t really know what it was, they recommended that I go back and see my primary care physician and bring that up to them. So, that’s exactly what my mom did. She said we’re going to go see your pediatrician and we’ll see what she says. So, at the appointment, my pediatrician was kind of fighting my mom saying that it wasn’t rheumatoid arthritis. No, we don’t need to do that test. It doesn’t seem like that’s what it is. My mom was like, okay, look, well, my grandmother, so Randi’s great- grandmother, my great-grandmother and one of her daughters or my mom’s aunt both have rheumatoid arthritis.

So my mom was like, well, there’s a genetic – family members who actually have it. My mom kept begging to have the blood work done and finally the pediatrician was like, okay, we don’t even know the code for testing for RA. So we’re going to have to look that up, but we’ll give it time.

Obviously it’s not something that is tested often if they didn’t even know the code. So my mom just said, we’ll wait for the code and we’ll call it a day. Lo and behold, once we got the code back, I got the blood work done and I found out I had arthritis. I was then  transferred to a pediatric hematologist. I finally had a diagnosis! Seven years to this month of us having this conversation. 

Cheryl: Wow! So you had to go through a lot. I mean, imagine how much longer it could have been if your mom hadn’t been such a fierce advocate for you, right? 

Randi: Oh, for sure, definitely longer, one hundred percent would have.

Cheryl: What age were you at when you got your diagnosis?

Randi: I was 16 when I officially got my diagnosis. 

Cheryl: So you ended up being a college athlete while having rheumatoid arthritis. Can you tell me a little bit about what that was like?

Randi: So let’s see, I was quiet about my RA when I first stepped on campus, because I did go to a ( ) school. Competition was tough and I didn’t want my coaches to think I couldn’t perform and I didn’t want my teammates to think I couldn’t either. I definitely didn’t want people to take me lightly. So I kept it quiet, a secret really. But, in terms of honesty, when I was lifting heavy weights during my freshman year of college, I gained 20 pounds, just from lifting and exercising so much. So I didn’t experience as many flare ups when I had that much muscle mass. And, I mean, I believe that it’s because I had so much muscle that that was taking so much pressure off of my joints.

So, I didn’t have as many flare ups. I definitely had days where I was fatigued or I was a little rundown, but I think that since I had such a high caliber amount of teammates around me, that pushed me to ignore how tired I was. Ignore if I was a little bit stiff because I definitely wanted to be there. That helped me from making sure I took my medication on time, because I definitely wanted to be in good shape. I also made sure to go to the training room a lot, do a lot of rehab and make sure of all the preventative stuff. So honestly, I think mentally, I didn’t think about it as much at the beginning as I did once my RA started to get bad towards the end of my career. At that point, that’s when it definitely, it definitely got into my head a lot. 

If I didn’t have RA, I still would be competing at my dream school. So that definitely started to mess with me. But in all honesty, I always thought of myself as the same as everyone else. And, I just wanted to make sure people thought of me that same way too. 

Cheryl: Wow! And yeah, it’s just so tough to be a college athlete and then to have to battle that on top of that. That’s just amazing! Just for the record, you did track and field, right? Just in case anyone’s wondering what the sport was and the triple jump, right? 

Randi: Yes, I triple jumped. 

Cheryl: Yeah, I’m sorry. I’m just wondering if that affected your feet? Because there was a lot of pressure on your feet, right? 

Randi: Yeah, it was definitely hard on my feet, which was kind of crazy, but it wasn’t really the balls of my feet that I had an issue with. It was more so my heels. I think because in triple jump when I was in high school, it was the balls of my feet. But when I got to college, I learned how to jump correctly. So I wasn’t striking the ground with my heels. Once I started to do that, I was like, Oh, my heels hurt a lot. The only other thing I had was shin splints, but the balls of my feet, surprisingly, I think maybe because of learning how to jump correctly, the balls of my feet were definitely saved.

Cheryl: That’s great! The balls of my feet, just through my daily activities are swing dancing. Those are the ones that have hurt more than the heel, but I see how with the mechanics of how you’re jumping and running, could affect the heel. But yeah, that must’ve been really hard when you ended your college career. How many years into college for you? 

Randi: I started freshman year. I only got to compete in two meets and then I injured my ankle. Once I injured my ankle, I was misdiagnosed for like a year. We thought it was something else and that’s what it ended up not being; by that time I had been misdiagnosed for so long. In the meantime, I thought that the injury was resolved, so I came back my second year and started training in the fall. I realized my ankle still really hurt. So we went through the process all over again around Christmas time of my second year. So, in my sophomore year I had surgery, at which point, I had only gotten to compete two weeks so after that surgery, I had to walk away from the sport. 

Cheryl: Oh, I’m sorry! That’s so disappointing when you worked so hard. 

Randi: Yeah, it definitely was. And I definitely was super upset because I walked away from gymnastics too. But, I think my coach definitely enjoyed having me around the team and they become like family. He allowed me to be a volunteer coach so I got to stay around for my final year of college. It was amazing. I loved the transition of like Randi the athlete and then the new freshmen were calling me, Coach Randi. That just made me really happy. 

Cheryl: That’s such a great example of how due to rheumatoid arthritis or any other additional injury or illness, it might affect your ability to participate in the things you value, but you can find a different way. I was a division three soccer player, so nowhere near as the same caliber as you, but the team aspect and the social aspect is something that I think people who aren’t athletes don’t always understand, that it’s not just about the sport. It’s about the family, they become your family. It’s like your identity. It’s what you’ve worked so hard for. So yeah, it becomes a big part of you.

Yeah. I’m wondering, how did you decide on becoming a personal trainer and then now pursuing chiropractic school? 

Randi: So, this is actually one of my favorite questions. I’ll start with personal training because during my last year of college that was when, my RA got really, really bad. And, so I was playing really bad and I was 600 miles away from home. I was just miserable and that was at the point where we were switching medications and trying to find something new. It really was just, one of the lowest points of my life because I had lost 20 pounds in one month and I just was really sick and it just wasn’t a good time at all.

Once I finally found that new medication I wanted to start working out again, because being an athlete, that was something I did all the time. I wanted to become that athlete again, so I started working out again, thinking that I could just jump back into it, at the level I was at during my freshman year. I really thought, oh, I can do that. No, I absolutely could not. I was like, Hey, you’re not at the same level you were at, but that doesn’t mean that you can’t get back to that level.

At the time, I was taking my exercise physiologists class for my senior year and my professor told me that the class was tailored to how to prescribe exercise to people that have various conditions. In class, we got to a point where we talked about how you prescribe exercise to people with different types of arthritis. I was all over this section because it was like, I can come up with a workout journey specific for me, and then it’ll be perfect and I can start out slow.

And it’s exactly what I needed to do. So I learned through that class, how to prescribe exercise for people with arthritis and that made me want to get that certification as an exercise physiologist, because I know what it’s like to walk into the gym and speak to a personal trainer and you tell them, this is what I have and they look at you, like they never heard of it and want to move on. Meanwhile you’re like, well, I can’t do that because you’re in so much pain. You flare up and can’t work out anymore. Ultimately, it just makes you feel defeated that you can’t ever work out again when that’s really not the case.

So that’s what got me into personal training and getting that certification because it was personal and I wanted to be that for other people. In terms of chiropractic, I have always loved the medical field. I knew that from a very young age.

That’s exactly what I wanted to be because I was injured so many times. I’ve been a patient so many times, so I know what it’s like to have that connection with your doctors or physical therapists and everything in between. Initially, I jumped around a lot. At first, I wanted to be a physical therapist, then a pediatric rheumatologist, then I jumped to an ophthalmologist. I was jumping all over the place. It got to the point where I’ve always been business minded; like the entrepreneur in me kicked in. I always wanted to own my own business, so someone came in and spoke with us in one of my classes at Alabama.

She was a representative from Palmer Chiropractic College. I was just listening to her. Of course, you hear about chiropractors and you think of just big men being chiropractors. You don’t think of, or really see women as chiropractors. And I’m only five, three, barely 125 pounds. So when I thought of applying adjustments to people, I thought there was no way I could do it. I’m not even going to think about that. It was funny because my dad was telling me that one of his good female friends had just become a chiropractor. My first question was, how tall was she? He was like, well, I mean, she’s like five eight. I said, yep, I’m not that tall so there’s no way. I spoke with the woman when she came to my class and asked her about how small I am and stuff like that. And she told me there are so many chiropractors that are my size. And I was like, okay, you’re just saying that, because you want me to go to school there. But, she showed me a list of all these chiropractors and their Instagram’s. It became like this perfect little combination because I always wanted to be a chiropractor growing up. We have a family chiropractor we’re close with and so that was just something we always did.

And when I saw him a lot, when I was first noticing my symptoms with RA and just bouncing around. My symptoms weren’t as severe at the time because I saw him so often and I was getting massages and a lot of soft tissue work and other little rehab work that he was doing with me…

My RA is considered severe and it’s definitely active so I became passionate about it because it’s a natural side of healing and having chiropractor work with other health professionals, it really just made me happy. It was something that I became very passionate about and now being in school, I just love it more and more every day.

Cheryl: That’s so great. I think, especially when you’ve spent a lot of time, I’ll say…the way I think of myself before I chose occupational therapy was kind of flip-flopping, but for me it was like, I’m going to be a teacher, I’m going to be a speech therapist, physical therapist. I want to be an OT, oh wait no, I’m going to go to law school!

Of course, everyone goes through that phase, right? I want to go to law school when you’re the kind of person who doesn’t, you’re open to so many different ideas when you finally make a choice. I think you’re a little bit scared in the back of your mind. Like, am I going to be happy with this? What, am I going to flip flop again after this? But for me, when I went to school, I was like, I love this. It’s such a great feeling. 

Randi: No, one hundred percent, I understand. When I started chiropractic school, I was like, are you sure you didn’t want to go to PT school or med school? Right, but now that I’m in it, I absolutely made the right choice and I’m so excited. I can’t wait to graduate and start practicing because I definitely want to focus on sports rehabilitation. I still get to focus on PT and focus on chronic illnesses and autoimmune illnesses. I feel like I’m living my dream. I’m so excited. 

Cheryl: The dream is to live your dream. Are you currently working as a personal trainer on the side during Chiro school? 

Randi: Yes. Right now it’s more where I set up workout plans for people because not everyone is in Houston where I’m located. So I actually send stuff out to people. That’s one way. I was training my best friends recently before Corona happened and that was a lot of fun. 

Cheryl: That’s so great. I want to give you a chance if you would like to use this platform to bust any myths regarding exercise for people with RA because I’ve been on social media and there can be a lot of confusion. Like, should I exercise if I have pain and, of course, medical disclaimer, if you’re having anything severe, you should go to your doctor and see your medical team.

Yeah! Do you have any myths that you like to educate people about or maybe even a better way to put it, just like general tips and tricks? What kind of exercises have you found helpful for yourself and for the people you’ve worked with? 

Randi: Yeah, I think when you first start working out, you definitely want to use resistance bands because the biggest thing you want to build is, you want a certain level of muscle. As I mentioned earlier, when you have more muscle, that takes pressure off of your joints. I did run into that problem. When I first started working out, I wanted to build muscle, but I was building it with heavyweights. So I had to start with resistance bands because I was still building muscle and I was able to actually minimize the amount of flare ups I was having, because when we work out, there are times if you overuse a joint, it’s not going to be happy with you and it’s going to flare up.

I would say it is a longer process for people with rheumatoid arthritis to start back working out again. But, if you’re gradually and slowly building muscle, that helps you to sustain and have less flare ups and more workouts. One very important thing for people with RA to remember is that we focus on cardio because RA can affect the cardiovascular system. So if your heart is not functioning the way it should be functioning and blood is not pumping the way it should be pumping, that leads to problems. I know that not everyone can just go out there and start running because I definitely couldn’t start running right away.

There’s definitely many ways you can do cardio – swimming, ellipticals are really nice. I loved biking or even using the arm bike. Those different things that help to get your heart rate up just a little bit. It’s really good. and if you’re doing cardio, then you want to do 30 minutes of it. Now, that doesn’t have to be 30 minutes in a row. You definitely can split it up between three sets of 10 minutes of something, or you can even split that into more and do six. Sets of five minutes of something, as long as you’re getting 30 minutes in, no matter how you get it, it is the exact same value.

A lot of people don’t know that because people think 30 minutes? I have to jog for 30 minutes. I can’t even jog for more than 10 minutes and I will go ahead and put that on record because I can’t. I would be so tired. For me, it’s easier to split it up and make it really small so I can keep going. I think for me, that helps with fatigue too, because if I do 30 minutes all at once, I’m more likely to feel fatigued versus if I did 10 minutes in the morning, 10 minutes at lunch, 10 minutes in the evening.

Cheryl: Yes! Break that out and it doesn’t make me as likely to feel, sometimes you could get a little bit of exhaustion if you’ve overdone it or did too much at once. I think that scares some people away from exercise, they try it and they may be pushed themselves too far. Then they feel like they can’t do it because it hurts. And so learning how to, almost be like a little detective with yourself, like, okay, I tried 10 minutes and that was too much. So let me try five minutes. Let me try breaking it up, I’m assuming that’s how a personal trainer or a physical therapist would do.

I mean, obviously OT could help as well with exercise programs, but I like your point about, separating. I think sometimes people think exercise is one thing, like you said, it’s either exercise – it’s running or cardio or strength, but really for RA, it’s really good to have a balance between building muscle to support the joints, and getting cardio to sustain your heart.

And that was it. That’s been hard for me because I used to be a runner and that was my favorite. And it’s the easiest, right? Because for me, it was easy in terms of logistics. You don’t have to remember where’s the exercise band, where’s this, you just need to know your running shoes are there and just get up and run, whereas I’ve had a harder time since I stopped running because of RA. It’s harder to remember to integrate it my routine.

Randi: I understand because for me, I hate running. If it’s something I did, if I never had to do cardio again, I would never do cardio. I would rather lift weights. So, one thing that I like to do instead of just running, because just thinking about putting some shoes on and running for me is, I’m crying. I don’t want to, but I have thought of how can I do it? My resistance exercises as well as the cardio. So, I actually love to do body weight circuits. I’ll do jumping lunches for a little bit, take a ten second break, then I’ll jump into, I don’t know, maybe some crunches for 20 seconds and I take a ten second break. I had to tweak the time because I couldn’t do jumping squats for 20 seconds. I’ll try, give it 10 seconds and then relax. But then I’d do the circuits and hit my resistance and hit my cardio both at the same time. And I’m not miserable, just jogging, but I’m actually just moving.

I then found a better combination. If I could do circuits for the rest of my life, if I had to pick one thing, it’d probably be circuits. I wonder if there’s any way people could see videos of you. I definitely have some, I think, I have some circuits on my Instagram. I’ve been meaning to record more of them because I realize that people prefer circuits because no one likes, well I can’t say no one, but many people don’t like it. You know? I know I’m in the minority that I used to love running but it’s very common to not like running. It’s more like, I get bored. I respect it. I used to call the circuit training sometimes, like an obstacle course kind of thing. Not like a real one, when you’re like going to the hoop or whatever, but where you’re kind of like mixing and matching. Like some lunges.

Cheryl: I think that is definitely good for attention. If you get bored with exercise, my favorite running wasn’t long distance, it was intervals like hills and I realized that. My feet would hurt too much if I did sustained running now, but I can go up and down stairs. So that’s what I try to do. I live in a tri-level home and have two sets of stairs. So I can enter the stairs to get to the entrance. I’d go on the stairs, outside and then up and down the stairs inside to get my heart rate up really fast, at least if you like high end. If I have to do cardio, I love to sprint because it’s quick.

The heart rate jumps up; I’m out of breath for a quick second, and then I’m fine. I can recover and then redo it. 

Randi: I do love running hills. I love doing a 50 meter sprint, something that’s short, or I have to, if I’m in a big open field, like a football field, I will do a little bit above a jog for about a hundred yards. I get to the other end and rest for about a minute 30 seconds. Then I’ll do that going back and I’ll try to do that at least 8 or 10 times. So for me, it’s not just sustained running, but I still am getting my heart rate up and doing something that’s quick. 

There was someone that I need to look up. I’ll have to find this. There was someone that tried to figure out what is the shortest workout you can do, that has a really good effect. It was one of these bursts. It was like, get up from your desk and do 30 seconds of stair climbers or something, and then get back down. I’ll have to find it.

I think a lot of times people think quantity over quality for exercise. Depending on what you’re targeting, you could get more bang for your buck doing 10 minutes intervals – jog the straights, sprint the curves or something versus 30 minutes of slow jogging. It just depends what you’re going for. The beauty of exercise is you can make it exactly what you want to make it. I think that if it’s not fun, then it makes it harder to do it so it’s always about tweaking it to make it more fun and enjoyable.

Yeah! I think dancing is the one thing I’ve been thinking a lot about lately because I really enjoy dancing. I know not a lot of people like dancing in public or dancing on video like I do. I’m like, look at my name, but I recommend that when people are averse to traditional exercise, if they find it intimidating, to just get up and dance. No step in, clap or step into, maybe a gentle clap or just step to the beat, and get your body moving. That was my second dream growing up, to be a hip hop dancer. At this point I’m like, Brittany, just take a hip hop class but I’m like, no, you’re kind of old school. I don’t know but now that you brought it up, I am going to take one accountability partner. I’m going to! Now I have to! We know one of the few good things coming out of the pandemic is that there are more online classes than ever. So I’m sure you can find a good online hip hop class.

Cheryl: I know there are some good swing dancing classes or jazz, which is what I did in my twenties and early thirties. It’s true, you’re so right. You’re not going to keep doing it unless you find it fun or just intrinsically rewarding. Like you feel better after you do it. So you keep doing it? 

Randi: Yeah, I think I’m going to. I’m going to look around because me and my brother growing up, we used to watch hip hop routines on YouTube and we would learn them in our rooms. So, I think I could find some general ones. I’m always trying to give encouragement or advice to newly diagnosed patients because it’s so common to get misdiagnosed. I try to talk to other people and ask, how did you wrap your mind around this over the years?

Cheryl: Do you have any general nuggets of wisdom or support that you like to share with newly diagnosed patients? 

Randi: For sure! I wish someone had told me this when I was first diagnosed, is that it’s your journey. I like to think of it as track and field in the terms of you having to stay in your lane. If I am running my race and if I’m in lane four and I look in lane five, then I’m going to mess up. My race is not going to go the way I want it to go. It’s not going to go how I was trained too because I was too focused on who was in lane five. I feel like that just goes with so many other aspects.

When I did gymnastics, if I was on the balance beam and someone was on floor exercise, I can’t watch their routine while I’m on beam, because then my routine is not going to go as planned. So I believe that we have to focus on understanding that our journey is specific to who we are and what may work for you may not work for me and vice versa. I can’t come down on myself and think something is wrong with me or discredit who I am, because what works for you may not work for me. 

I feel like when we’re talking to new people and finding out what they do to control their RA, we just have to take it with a little bit of understanding. I’m so thankful that they share that and they’re open with me, but I also need to think that if it doesn’t work, that it’s completely okay and, even if you’re doing something that I want to try, then just try a little bit of it. I don’t need to hear exactly what someone is doing and then wake up the next morning and try it to make my life match theirs. I guess just understanding that things are going to change and what may work for you three years ago may not work for you today and that’s okay. It’s all about tweaking and changing; my RA is different from everyone else’s RA and I think that’s pretty cool.

Cheryl: We are all not the same and so it’s pretty specific. That is so beautiful. I also think that social media is a blessing and a curse. I was diagnosed in 2003 before social media existed, It was literally being created at that time. I had no one I could talk to. I just had my own journey and like you were saying when you have all these other examples, it’s so tempting to think, well they did that, so I should do that or they’ve done that and they feel better. So I should do it too or just feeling judged by the people who are like, well, why aren’t you doing this?

So, for a little bit, because I wasn’t on social media when I first was diagnosed. I didn’t jump on until I had already had RA for almost five years. So I didn’t hop on social media but just did what I wanted to and I think for me the only thing I felt like I was missing from social media was that support group. Just to be able to talk to people and know that there are other people out there. Looking back at it, I definitely appreciated that. I had my journey under control. I wasn’t trying to tweak things, I wasn’t going back and forth. I was just trying to figure out what I needed to do and that was a great experience.

Randi: Even to this day, there are times where people are on different diets, like a carnivore diet, vegan, pescatarian or gluten-free. There are so many diets out there. If someone is on that diet, or a specific guy asks me, what diet are you on? I tell them that I’m not on any specific diet. I just try to minimize how much “bad food” I eat, but I still eat what I want. Then it’s like, no, you need to do this. This is why this is happening. This is why you flare up. This is blah, blah, blah and I’m like, no, I promise you, it’s okay, it’s all good. Now, there was a time where I didn’t eat for four days in a row and I still had a flare up, so I could eliminate every food in the world and I still would flare up.

Cheryl: It’s okay, I’m okay. So speaking my language, the diet seems to be the one that people get fixated on. It’s hard for people to understand that because it worked for you doesn’t mean it works for everyone else. And for me, the fact that they’re so good, these diets were so different.

Exactly.! Remind us of that. You are literally, a carnivore or vegan and those are complete opposites. Some work great for one person and then some of them work great for another so that’s evidence that what works for one doesn’t work for another.

Randi: Exactly! So, no, I’m not; it’s crazy but I’m happy. I’m happy for those people who are on those diets and it works for them. I’m totally happy for them. It also makes me super happy that they have found a way to control their RA in a great way. I just know it doesn’t control mine, so I’m okay. It’s not just diet, it’s the natural cures or natural approaches versus Western medicine. If there is no way to come behind them and I think that that’s such a big thing when I tell people that I’m in chiropractic school, their response is but you take medication.

We can combine the two and optimize it because if both are working for me, that’s perfect. That’s what we need. And that’s okay. It’s like throw the kitchen sink at it, you know, but it’s not working so don’t keep doing it. I think it’s great that you’re getting trained as a chiropractor so you’re able to speak to it from the sense of, or from the perspective of a professional, and as a patient who has benefited greatly from Western medicine. You tend to think of it as rheumatology is the Western meds versus the Eastern.

Really, there are so many that tell me that acupuncture works for them. That’s great because we want the patient to be happy and feel good. So if I tell my doctor that I turned around three times yesterday, drew a rainbow and I felt good, they’re going to tell me, that’s great and to keep doing that! Keep drawing and turning around in a circle. You know? Another thing is you guys have a lot of experience as a patient, and not just as a patient with RA, but also with your various injuries in general.

Cheryl: Do you have any good advice for other patients so they can have a good relationship with their provider? 

Randi: Yeah. I think that when you walk into a doctor’s office, I one hundred percent believe that doctors are impressed if you have a list of questions for them. It gives them a sense that you want to be in charge of your health and that shows that you want to feel better and live the life you want to live. So, definitely having a list of questions when you go into the doctor’s office helps to build a connection. I also believe that when you aren’t, I feel like people think that when you don’t have a doctor’s appointment, you can’t ask your doctor any questions. Absolutely not! 

In between your doctor appointments, email your rheumatologists if something is going on. If you’re not feeling right, email them because when you see them six months later and they tell you I haven’t heard anything from you, is everything going well? And you tell them well, all of this happened, it frustrates you because you’re living in pain and you’re only seeing your doctor every six months. So that’s the only time that you actually can feel better and get closer to your doctor. 

But, if you’re communicating with your doctor and keeping things open and letting them know what’s going on with you even when you’re not seeing them, that helps your doctor know how you’re doing, and helps to build that connection. Now, when you do see each other and you have been communicating with them, they’re able to remember what has been going on in terms of your diagnosis. I definitely think communication, even when you don’t see them is so, so important. Sometimes, even if you’re just telling them that it’s been a month and you’ve been taking your meds on time; you’re doing great, hope you’re doing well and thank you. That goes a long way because doctors are humans too. They are like your friends and they want to check in on you and make sure you’re doing well.

Cheryl: Totally! I think a lot of times people are afraid and don’t want to bother them but, you know, that’s their job and that can actually help them do their job better. They can only care for you better and I promise you, doctors are not going through all this school to only see you for 30 minutes and calling it a day. They want to build connections with you and give you the best care possible. So make sure that you’re doing your part too, by talking to them like you would a friend, especially rheumatologists because so many have gone into it because they want that long-term relationship with a patient. I’ve heard from some of them and they don’t want to just see you in and out in 20 minutes or when you’re asleep, like anesthesiologists…

…You know, I saw my first rheumatologist, who I still see now, she was just out of med school. I was 21 and she was probably thirty-something at the time. I’m hoping to see her till she retires and that’s most of my life, right? She’ll be 60 or whatever. I can’t do the math, but you know what I mean. 

Randi: No, I get it. It seems that’s how me and my pediatric rheumatologists were, we saw each other from the time I was 16. She even saw me through college. So once I had to transition from her, she told me we’re friends. We are still going to go get coffee together, we’re still going to have a relationship and I was like, I love you, mom. You know, it was such a great relationship.

Cheryl: And so they definitely want those connections. That’s so great. Thinking about interactions between providers and patients, I also wanted to bring up, you are a person of color in the U.S. receiving healthcare. Is there anything that you wanted to speak about how race affects healthcare in general or your specific experiences? 

Randi:n Yeah, for sure! I know being in chiropractic school, it starts out with the statistics that black women are four times more likely to die during childbirth than any other race. So we always talk about that statistic and we’re always thinking of, we’re not delivering children, but what can we do to ensure that we’re giving the same amount of care to all of our patients across the board? And so I definitely think of it when I’m seeing my doctors. For the most part, I haven’t had any issues with my doctors. I think only with the one where I was telling them that I was in pain, that it wasn’t necessarily taken seriously. So my mom, thankfully my mom is, I just wish you could meet her because she’s so strong.

She was sitting there and was like, look, I know my child is grown and she’s telling you that she’s in pain, but y’all, aren’t taking her seriously. So we’re just going to go ahead and go since y’all won’t take her seriously. I think that had my mom not been there, I probably would’ve just been like, maybe I’m really not in that much pain. It’s okay. I’m just going to go home or whatever. Who knows what complications I could have had. I do feel that’s what many people of color are faced with. They feel invalidated and start to think, here is someone who has been to school X amount of years, and they’re saying this, but how I’m feeling is not indicative of something that serious. But, at the end of the day, you know your body better than anyone else. Thankfully, I had a mom who was in the room who was like, y’all are going to listen to my daughter or we’re going to go. And she made the change.

I feel that now since the conversation has been talked about more, it’s opening people’s eyes. I’ve had people contact me and tell me, these are the doctors that I want to see, or I need to see a list of doctors, because I’m in chiropractic school and I go to school near my home. So, everyone who is out of town comes into the school, people of color, and they’ve asked if I know any specific doctors who look like us, that they could go to and, if that if they can go to those specific doctors that look like us, they’d feel more comfortable. I feel like I would actually be heard and it be a better experience. Honestly, I just hate that people have to seek out people that look like them to really feel like they will be heard. I want everyone to be heard from no matter what person office they walk into.

However, I do think that with what’s going on right now, other races are going to notice that they need to change how they are, because it’s becoming an issue. If you’re on the fence of going into the medical field or you just don’t know, or even in another aspect of teaching or something of that nature, just do it because there are little ones that look just like you that want to know that they can make it too and that there’ll be safe. 

Cheryl: That’s beautiful! Just like we were talking about earlier with social media being a good and bad thing, I think people are hopefully exposed to more images of people who look like them as doctors. I follow a lot of accounts of doctors and, being from Seattle, there are a lot of Caucasians and Asians, but not as many African-Americans. I never had an African-American doctor until I was in California so being able to see those examples is so important. I’m going to share some statistics around regarding black women and pain, black men; pain particularly for women, their pain isn’t treated as comprehensively, as white people are.

There’s no excuse for that, right? 

Randi: Yeah. It’s just really unfortunate. So thank you for sharing. Hopefully we can spread awareness. Of course, and the rheumatology field is pretty much all Caucasian, but hopefully that’s changing. My pediatric rheumatologist was Hispanic and that was definitely different. I never had a doctor that was Hispanic. That was new for me and with that experience, there were certain things that, like with her, it was kind of crazy because I think I was so conditioned at that point.

Marina, you’re not in pain, whatever level of pain you really are in, it’s a negative compared to what people are in. With her, when I would switch, she would ask me how’s your pain levels? I’m like, I don’t know, a two. She would immediately go, okay. That’s a six. So she always knew that if Randi says a certain number, then it’s higher than that and she’s really in pain or if Randi sends me a message saying ‘Hey, I’m not feeling too well, I am experiencing pain’, then that like a code red. She’s really in pain and so that that really helped me because I knew that she was listening to me and it helped me transition to, I’m in pain, I can say it. I need to stick behind my word and be honest with the pain levels that I’m experiencing. 

It is so common to under report your pain to your doctor and in my case, it comes from a fear of being called a hypochondriac or being a complainer. Have you ever had that same fear? 

Cheryl: Oh yeah, because it’s almost like no one can see our illness. It’s like, what are y’all really complaining about, because we don’t see anything going on. I also think for you having six years where you were told nothing else is wrong or it’s just random aches and pains from being an athlete. I had about two to three years where I was told repeatedly, like to the point where I had deconditioned a lot. Like I had gone from 125 pounds to barely a hundred pounds and this is not normal for me. We’re just stressed.

I was told that I should go to a counselor. I’m not against counseling at all, but I was like, counseling is not going to heal my body but when you finally get that validation, you can also feel like it’s still tenuous almost like you don’t want them to think you’re a bad patient.

The doctor patient relationship is a complicated one because there’s a power dynamic, right?

Randi: For sure and that’s what really made me fall more and more in love with chiropractic. It’s almost as a chiropractor, people are walking into your office because they’re in pain. That’s the reason why they’re in your office. So, I never had an issue with being at school because we have a clinic at school that we go to. There’s never been a time where I said that I was in pain and they dismissed it and were like, you’re fine, nothing’s wrong. They made a way to treat me and made sure to check up on it every week to see that I was getting better. So, I guess it’s just everyone evolving and I’m happy for that. I just hope that once our little grands and great grands are running around, that they feel validated from the start, you know?

Cheryl: Oh yeah! Healthcare has come a long way in terms of patient centered care and collaboration with patients versus even just, you know, I remember my mom telling me when she was pregnant and we’re very Caucasian family, so it wasn’t having to do with race, but it was like being a woman in the seventies and early eighties, they were so dismissive and she would bring something up and they’d be like, you’re fine. They even chastised her for complaining too much when she was in labor. I hope that things, like you said, for our grand kids, will get better, but it won’t get better until we address some of this stuff, until we speak up about it.

Randi: For sure! 

Cheryl: This is so great. I want to be sensitive to your time. Is there anything else you wanted to share? I feel like we really touched every single aspect of my life, so I was really happy when you got engaged. Congratulations for that!

Randi: Thank you. That was a great, great time! I’ve been dating Matthew for four and a half years, so it’s been a long time. We started dating my freshman year of college and, the crazy thing is the person that I was talking to, the guy I was speaking to right before meeting Matthew. We were just having a conversation when we first met and, it just came out in conversation. I told him I have rheumatoid arthritis. He stopped mid-conversation, looked at me with this blank stare and goes, yeah, I’m definitely not dealing with that and left. I’ve never spoken to this man again. That was the last moment I ever talked to him and of course, I was devastated. I was so sad and thought is this what college is going to be like for me? This is horrible. Yada, yada, yada, then came back to you. So it’s just kind of like now looking back at it, I think I handle those situations because people do walk out of our lives or they don’t understand RA or our chronic illnesses.

I had to change my mindset of that it’s not me they have a problem with, it’s their not wanting to understand. Some people grow up and you have this idea in your head of what RA looks like, or you have this idea of what everything else in the world looks like. So if someone’s not going to ask you questions about how RA affects you, how it looks in your life, then they don’t know you. If they turn away from you, it’s not because of you, it’s because they don’t want to understand. I’m so, so thankful for Matthew because the second I told him, he was like, okay, tell me more about it. He’s always wanting to learn more. He goes to my appointments with me. It was so funny, he met my pediatric rheumatologist and she was like, Oh my gosh, you brought a guy to your appointment? My adult rheumatologist also met him and loved him.

He’s been very active, so I’m super excited. It’s like I’m in a movie. It’s so beautiful. Our best friends from college were there. He’s a photographer and he took the pictures and his girlfriend was there, who is my best friend. It’s crazy because they both will be in the wedding. So it was like, I’m going to cry, so thank you. I’m super excited. I get giddy every time I think about it. I was just really lucky that I didn’t have any experiences like that with people just thinking that, or at least if they thought that they didn’t tell me, you know?

Yes, but it’s common. I think a lot of times it’s important to acknowledge that that’s probably going to happen or there is the potential that it could happen to everyone, but it shouldn’t. Does it mean that no one is going to understand? You found that person and even when you find that person, I think for a while, I battled with thinking that I was a burden and that Matthew had to do this. I thought about it so much, when planning for the future, kids and stuff, just thinking, what if you have to take care of kids and take care of me? I just got in my own head and felt that I was going to be a burden to him. People would always tell me that I was so lucky to have somebody that wants to walk through this journey with you. One hundred percent, I’m so blessed to have Matthew. I will say that a thousand times, but I also had to realize and tell myself that he’s lucky to have me too. Like I’m so much more than just my AR, that is just a piece of me. There are definitely many more qualities that I have that Matthew was attracted to and wanted in a long-term partner. So we have to understand that as chronic illness patients and auto-immune patients, we are valuable and people are blessed and lucky to have us in their lives, just as much as we are to have them in ours.

And for me, what gets to me about that, man? The mentality of thinking that someone might be less than because of their illness. To those people, I want to say, that anyone at any time could develop something like this. Just because you’re 23, one hundred percent able-bodied. You could develop anything in 5 years, 10 years, you could have a stroke. You could get MS. You could get RA. It bothers me one hundred percent but mine came a little early, which is okay. At least I know what I’m dealing with and I’m prepared. I mean, I feel really bad. There are a lot of women I’ve encountered now that I’m a mom and in my late thirties, I am connected to certain people who didn’t get their diagnosis and didn’t develop RA until after having a baby. That can be a whole other level of we say in sickness and in health, when you get married but this person is now clinically stuck with me and it’s like, yeah, they could get hit by a car tomorrow and then you’re going to be there for them because you love them.

That is the thought process I wish everyone had. I understand there have been people in ugly relationships with people that have been rude and that has happened. That can’t be discredited, but I just want those people to know that those people were just rude. It wasn’t a reflection of you, it was a reflection of themselves. 

Cheryl: My gosh, your negative opinion of me says more about you than me. For me, it’s like you know people are going to think what they’re going to think regardless of what you do. You could be perfect. I mean think about, actresses and movie stars are so beautiful and so good but yet people would say like Tom Hanks, he’s overrated, or Meryl Streep, no talent, so no matter how perfect you are someone will cut you down. You just have to just have to love you for you and that’s it. That’s like the most perfect point to end on.

Randi: Okay. I think that’s going to go on our soapbox, like Cheryl and Randi’s soap box hour. That would be fine. I know we could look, we can dive in because we were ready. 

Cheryl: Thank you so much. Thank you so much for listening to today’s episode. Don’t forget to check out my latest courses and resources on my arthritis life.net.

Cheryl: This podcast is brought to you by the beginner’s guide to life with rheumatoid arthritis, a four week online education and support program that I created from scratch to help people with inflammatory arthritis, to learn everything they need to know to navigate the social emotional, physical and logistical challenges of rheumatoid arthritis and related diseases. The next group was going to start in August, 2020. To learn more about arthritis, life.net, or bit.ly/arthritis course all in lowercase. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even Tik Tok. Check out the links in the show notes.

OUT TAKE: 

Cheryl: What’s funny is I’m 38. I think I’m older than you because YouTube wasn’t around when I was little. So, we would have to wait for MTV for the videos to come on, like the ones for them to show people who don’t understand what it was like. Anyway, there were these guys, in the late eighties, early nineties called kid n play and they did a dance that people are now doing on Tik Tok, where you put like you step away from each other, you step towards each other, you hit each other’s legs and like a pattern. Then you turn around and people are doing it all now. I’m like, I used to try to learn that. Yeah, I’ll have to say, we’ll have to put this in the show notes. This is very important for people. Yeah, one hundred percent.