Summary:
What’s it like to get diagnosed with one of the conditions you’ve treated as a doctor? On Episode 72 of the Arthritis Life Podcast, Dr. Saimun Singla shares her journey first becoming a pediatric rheumatologist (a Pediatrician who further specializes in rheumatology), then getting diagnosed with adult rheumatoid arthritis after the birth of her second child.
Dr. Singla’s experiences as a patient changed her approach to her patients, and led her to pursue a fellowship in integrative medicine. She shares what’s in her personal RA management toolbox, from sleep and meditation to medication and exercise. She also reflects on how her experiences ultimately led her to open up her own private practice in Houston, TX.
Full Episode Video:
Episode at a glance:
- How Dr Singla became a pediatric rheumatologist
- Diagnosis: Dr Singla gets diagnosed with adult rheumatoid arthritis after the birth of her second child
- Pregnancy: What it was like to be pregnant before rheumatoid arthritis and after her RA diagnosis
- Integrative Medicine: How Dr Singla’s personal journey with RA led her to pursue Integrative medicine
- What’s in Dr. Singla’s personal RA management toolbox: lifestyle factors like nutrition, sleep ,exercise, medication and other mind-body approaches in addition to medications
- Being both patient and doctor: Dr Singla describes how humbling it’s been to be a patient and how that’s led her to be a more empathetic doctor
- Pivoting career due to RA: how she started her own integrative pediatric rheumatology practice, Rheum to Grow, in Houston, TX which allows her to control her schedule and accommodates her RA needs
- Culture and the patient experience: Dr Singla reflects on how her South Asian identity and culture affects her patient experience
- Dr Singla’s words of wisdom for the newly diagnosed
Medical disclaimer:
All content found on 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.
Episode Sponsors
Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in September 2022!
Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Speaker Bios:
Dr. Saimun Singla is board-certified in general pediatrics, pediatric rheumatology, and one of the few pediatric subspecialists in the country who is fellowship-trained in integrative medicine. She was diagnosed with rheumatoid arthritis herself after becoming an attending rheumatologist. This unique experience of living on both sides of the exam table made her see the giant gaps in the conventional care model, and ultimately led her to founding Rheum to Grow, a medical practice for kids with rheumatic disease in Houston, TX.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen 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 I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Andrew Weil Fellowship in Integrative Medicine (for doctors)
- Dr Micah Yu – Integrative Rheumatologist
- Article about benefits of “shared decision making” in rheumatology.
- Chronically Brown: https://chronicallybrown.com/ – https://chronicallybrown.com/chronically-brown
- Speaker links
- Dr Singla’s Instagram: https://www.instagram.com/rheum.to.grow.tx
- Cheryl’s Arthritis Life Pages:
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl:
Oh, I’m so excited to have Dr. Saimun Singla with me on The Arthritis Life podcast today. Welcome!
Dr Saimun:
Thank you. Thank you, Cheryl. Thank you so much for having me on the podcast.
Cheryl:
Yay. Can you just let the audience know a quick introduction to you, like where do you live and what’s your relationship to arthritis?
Dr Saimun:
Yes. So, my name is Dr. Singla, and I am a pediatric rheumatologist in Houston, Texas. I have three school-aged children, and I’m also a wife. So, a little bit of a busy life over here. Houston is my home; I grew up here. The only three years I really left Texas was when I did my three years of general pediatrics in Chicago at the University of Chicago. So, the weather was slightly different than Houston, Texas. But it was fun. It was fun living that life, you know, it was before we had children, my husband and I, My husband is also from Houston. My last year of residency is when we had our first child. So, that was about 10 years ago now. And at that time, we kind of made a decision like, gosh, either we stay here and, you know, put down roots here or move back down to Houston where family is. So, I was in the middle of applying for fellowship, for pediatric rheumatology fellowship at that time, and so interviewed at a bunch of places in Texas and ended up matching at Texas Children’s Hospital in Houston. And so, it was very exciting. We all decided to move back down and it was another three years of training to complete that fellowship. And after that fellowship, I stayed on as faculty at Texas Children’s, and then I became an attending rheumatologist, which is just a fancy name for a grown-up doctor.
Cheryl:
That’s great. Oh, my gosh, yeah, there’s so many stages. And I think when people, patients go from seeing a pediatric rheumatologist to an adult rheumatologist, I think that it can be a rude awakening sometimes because the people that self-select into being pediatricians are a little different, right?
Dr Saimun:
That’s right.
Cheryl:
Do adult rheumatologists go through internal medicine first and then specialty? That’s what I thought, I just want to make sure.
Dr Saimun:
Yes. Our roads are similar but a little bit different. You have to do three years of general medicine for them. It’s internal medicine for us, it’s general peds. Our fellowship is three years after that. Their fellowship is two years of adult rheumatology.
Cheryl:
Oh, that’s funny.
Dr Saimun:
It’s just the way it is. Some programs are three years for them, but for the majority, it’s two.
Cheryl:
Okay, great. Okay, well, and then the interesting thing about your journey is after you became a pediatric rheumatologist, you had a personal experience with rheumatology as a patient. Can you tell us a little about that?
Dr Saimun:
Yes, the plot thickens. So, I am just living my life as an adult — or pediatric rheumatologist as an adult, right, at this point, and minding my own business. And then all of a sudden, I start to get stiffness in my fingers, fatigue, just pain, and I’m like, gosh, this feels a little bit inflammatory, but let’s just ignore it because I’m working. I’m a new, you know, attending doctor, I’m just busy. Few months go by and it’s getting worse. The fatigue is kind of like cutting into my days. At this point, I’ve also had a second child. So, I’m thinking it’s motherhood, you know, all that kind of stuff. And like any good medical practitioner, I don’t have a PCP. I don’t have someone to refer me.
Cheryl:
PCP is primary care provider, right? Yeah. Oh, no.
Dr Saimun:
So, I’m like, what do I do? And it came to a point where I’m like, I really should see somebody to figure out what’s going on. And I actually reached out to one of my adult colleagues, and I was like, “Listen, it’s probably nothing. Can you just, you know, fit me in,” and that’s a privilege in itself to be able to call up somebody and get a spot because for most people, a new patient visit takes about three months to get in. And so, here I am on the poor doctors lunch break, and I’m walking in, you know, trying to get a new patient spot. And she examines me and she’s like, “You know, Saimun, I think you have inflammatory rheumatoid arthritis.” And I was like, “Excuse me. What did you say?” Because I really was in denial. I was like, there’s no way could be rheumatoid arthritis, right? Like, I’m doing this day in and day out. How do I miss it in myself?
Cheryl:
Well, and there’s also — what do they call it? Like, medical students syndrome? Where like, you think you have everything —?
Dr Saimun:
The hypochondriac?
Cheryl:
Yeah, yeah, I hate that word. Sorry. I’m like, no, I don’t believe that, really — yeah. I think that’s extremely rare to truly be a hypochondriac. I think that when people are anxious about things, it’s usually them trusting their body. But yeah, but that syndrome, the quote-unquote ‘syndrome’ of the medical students, every time you learn about a new condition, you start being like, “Oh, wait a minute. That could be me.”
Dr Saimun:
I definitely had that crossed my mind. And then throughout the diagnosis, you kind of — this is the first time I’ve ever become a patient other than my OB care, right. So, I am just like, sitting on the other side, kind of flabbergasted by what she just said. And on top of that, I think the delivery of the diagnosis caught me off guard. Because she was like, “Listen, this is a run of the mill diagnosis in the world of rheumatology.” And I think she was trying to kind of connect with me as a colleague, like, “Don’t worry, this is not that big of a deal. We’re going to get this,” but for me, I couldn’t get past like, this is what you have. And then I walked out of there feeling like, gosh, she just — I feel like a disease that just came in like any other person into the clinic. You know, I’m not a person that has this diagnosis. I’m just this diagnosis for her in her 12:30 spot. And that’s when I was just like, is this how I’ve made patients feel? Is this how — is this what I’ve done to families before? Because it’s not a good feeling at all.
Cheryl:
Yeah, I mean, I really empathize with you. And I think it’s hard because I think — I’m wondering, obviously, I don’t know this doctor. But I wonder if sometimes people try to minimize the condition to try to comfort you to say, “Don’t freak out. Like, don’t think that your life is over. Like, this is, like you said, a run of the mill,” but then it ends up making you feel like they’re not taking it so seriously, taking seriously the impact this is going to have on your life and your career.
Dr Saimun:
Exactly. Because on the flip side, she has to see like 12, 15 patients a day, more than that. And so, she just she doesn’t remember me, right? Like, in my experience, but for me, this is like 30, 45 minutes of my entire day that is life changing news. So, when you start looking at it the other way, you’re like, oh, wow, this is a pretty impactful moment in this person’s life.
Cheryl:
It’s huge. I actually didn’t, I didn’t know how many patients rheumatologist saw a day. Because in occupational therapy, our visits are 55 minutes usually, unless it’s acute care when they’re shorter. But like, I’ve always worked in outpatient or school-based — actually in school-based, they’re shorter sometimes — but anyway, in outpatient clinics, there’s usually a maximum of eight people a day, unless you’re doing like a 10-hour day. But you know, so even that, you least have time to answer people’s questions in an hour appointment, but then thinking about having to deliver this kind of information day in day out, like 12 times a day.
Dr Saimun:
Right, right.
Cheryl:
I can’t — or I mean, it’s, I know, a lot of times patients, we do like to vent, you know, and say like, “Oh, I wish I had more time; I wish my doctor was better,” you know, but also like, there’s all these system things, like systemic issues with health care where it’s like, anyway, there’s reasons why things aren’t better, but this explanation not an excuse.
Dr Saimun:
Right. Right. But this is so eye opening, right? Because all of a sudden, instead of like compartmentalizing the care, I’m taking like a third eye point, or bird’s eye point of view, and just kind of looking at the whole situation and being like, I’m patient number six out of the day for her. For me, this is my medical care. And this is not the diagnosis I was expecting. So, kind of like, you kind of start to realize the interplay of everything. And like you said, this is system wide issues that exist in giving and being able to deliver good care.
Cheryl:
Yeah. Oh, my gosh, I have so many follow up questions. But, so how old was your second child when you got your diagnosis?
Dr Saimun:
He was I think about nine months old, like just under a year. And yeah, it’s common postpartum to flare.
Cheryl:
Exactly. Yeah. So, I mean, you have the — most people have a delay in diagnosis if it’s postpartum, even though it’s more common because it is also common for rheumatoid arthritis to first appear postpartum. But it’s also common for people without rheumatoid arthritis to have joint changes, right, during pregnancy and postpartum, and pain and overuse, you know.
Dr Saimun:
Right, which is what I thought it was, which is why I was like, “It’s nothing.”
Cheryl:
When you have a toddler and a little baby, so you’re probably, you know, you’re probably having to pick up the toddler and so, I immediately am thinking to myself, “Okay, what —” because I know you have three kids, so I’m curious what — I mean, again, I also want to ask what was your treatment for RA, but I can’t stop myself from asking — so what was what was your pregnancy like prior to RA versus your third child when you did have RA?
Dr Saimun:
That’s a very good question because my pregnancy was so uneventful the first and second time, and the third time, I was just hit with so much fatigue and stiffness and swelling, that it was just, I was like, “Is this pregnancy or is this the arthritis? I cannot tell the difference between what is what,” but most people have a different experience where their arthritis goes into control and/or into partial remission, at least during the pregnancy. And for me, I had the opposite experience.
Cheryl:
I’m so sorry. Yeah, I was one of the lucky ones. Like, I was teaching swing dance classes like seven months pregnant, like I was like, woo-hoo! But then the postpartum was all flare-ups, it was the worst. But it’s so, yeah, you have two kids to take care of and you’re trying to work? Oh, my gosh.
Dr Saimun:
Yes. You know, it’s just, ignorance is bliss. We’re like, “It’s okay, this is normal. This is all normal. It’s part of pregnancy,” and then the postpartum, you know, after I had my third one, the arthritis really got bad. And honestly, since that time which was now four years ago, I’ve had a very rocky road trying to get my arthritis under control. And then throw in like the COVID vaccines to cause flares here and there, you know, it’s all been kind of a roller coaster since then.
Cheryl:
I’m so sorry. Yeah, I can relate. I know a lot of people listening can relate to that. And so, what are some of the — if you’re if you’re comfortable sharing — what are some of the treatments that you’ve that you’ve tried? And I know that you’ve delved into integrative rheumatology, I would love to learn a little bit more about that too.
Dr Saimun:
Absolutely. So, the first meds I started, I think, were Plaquenil steroids. We just did a real conservative approach to see if that would kind of treat it at least, and it didn’t. I tried that combo for about six months, just low dose steroids and Plaquenil, let the Plaquenil kick in. Still with a lot of stiffness, so she put me on, I believe, my first medication was Humira every two weeks. She didn’t want to do methotrexate because I was postpartum and breastfeeding and stuff, so that was out of the question. But Humira, I had an allergic reaction to. Like, my face just blew up. And this was like months into the, months into the treatment, you know, so.
Cheryl:
Oh, you’ve been on it for multiple weeks and then you had an allergic reaction?
Dr Saimun:
Yeah, so somehow, I had sensitized myself to it and then I woke up with like swollen lips and eyes the day after my injection. And I, as a rheumatologist, know that that’s also a very rare side effect of the medication. So, I’m like, could I — did I eat something? It’s almost like more knowledge is not helpful in this situation. [Laughs]
Cheryl:
Oh, no. You’re dashing my dream that if I was a rheumatologist, I would just know everything.
Dr Saimun:
Nope, nope, nope. Quite the opposite. And then I got switched to Enbrel. And Enbrel actually worked for me for a few number of years up until my third pregnancy. I mean, I was like, “I feel so good. This is, I mean like, this is great.” And then, the point where like I got pregnant with the third one and just flared. And that was difficult. And since then, I’ve been on Orencia, I’ve been on Cimzia, I’ve been on Rinvoq. What else have I been on? Actemra. I mean, you name it, I’ve tried it. And so, right now my combination is Cimzia and methotrexate as of recent.
Cheryl:
Okay, okay. Wow, that’s a lot. That is a lot. And you’re — how old is your youngest?
Dr Saimun:
He’s three and a half. Three now.
Cheryl:
Okay, okay. Well, I just, I really — I empathize with the postpartum Whack-A-Mole kind of trying to get your symptoms. And I was really stubborn. I wanted to stay on Remicade because I kept thinking it was gonna work again.
Dr Saimun:
Right. You get like attached to that medicine. You’re like, please!
Cheryl:
Yes. I don’t want to change, I don’t like change. So, we were like, okay, Remicade. First it was every eight weeks, let’s do it every six weeks, and every four weeks, and let’s increase it. And we got to the point where it was the most it could be with my body weight or whatnot. And then we’re like, it’s just not working anymore. But anyway, sorry, back to your journey. Yeah, that’s a lot.
Dr Saimun:
We’ve all had similar journeys, where you’re like, hopeful, sad, hopeful, sad.
Cheryl:
Yeah. And how did you learn, or when — I mean, when did you even have time to learn about integrative medicine during all of this? So, first of all, what is integrative medicine?
Dr Saimun:
Yeah, right. Right. So, integrative medicine is the specialty of medicine that combines conventional or Western medicine with more complementary/Eastern medicine. And when I say Eastern medicine, it’s not just throwing like Chinese herbs and acupuncture and Ayurveda at whatever. It’s evidence-based therapies for specific illnesses. So, these are supported by the National Institute of Health for certain conditions. So, you can have acupuncture for headaches, low back pain, things like that. Just because I felt like the reason I pursued integrative medicine is because number one, all my patients asked about it. And they were like, “Well, what diet should I be on? What supplement can I take? Can I do this?” And in our regular training, our traditional conventional training, no one talks about this because there isn’t enough data to support the use of X, Y or Z, right?
And so, integrative medicine kind of came up on my radar because A) patients were asking me about it, and B) I had those same questions as a patient. So, I was like, let me look into this and how I can answer this for my patients. And initially, I wanted to do like a webinar on it. And then, I went into a rabbit hole online on More about integrative medicine and decided to pursue a fellowship in it, which is two extra years of training, just like a drop in the bucket at this point. I was like, I can do that. [Laughs] So, I signed up for that. I applied for that fellowship through the Andrew Weil Integrative Medicine Program at the University of Arizona. I’m just about to finish that this summer and next month. So, that gave me more of kind of a broader perspective on what to recommend based on evidence. And it’s, I’m not saying these are randomized, double-blinded, placebo-controlled trials. It’s just really hard in the world of integrative medicine. But at least there’s enough evidence to say that this works, and that probably doesn’t, so let’s not try that.
Cheryl:
Absolutely. I was just reviewing — well, first of all, congratulations! Again, I think anyone listening, it’s like, “How is she doing all this? It’s like having three kids and working?” Oh, you don’t know. Okay. People will ask me that and I would say I don’t know, either. But yeah, and that’s Dr. Weil, the fellowship in integrative medicine. For those who have listened to a lot of the episodes, it’s the same one that Dr. Micah Yu, who also has, you know, a autoimmune diagnosis and he’s an integrative rheumatologist, he is on the same one. And, you know, it’s interesting, because I think, you know, or I was just reviewing the UCSF website, like Osher Institute, and they have they have randomized control trials that they’ve referenced for nutrition and diet for rheumatoid arthritis, which I found really — because yeah, for so long, I kept hearing that line of like, “There’s not enough data. There’s no — no one’s doing any high-quality data,” and I’m like, wait a minute. People are — it’s changing. It’s slowly changing.
Dr Saimun:
It’s changing. And it’s not just institutions that have integrative medicine. Kind of across the board, people are starting to look at diet and psoriatic arthritis. I mean, just a couple of weeks ago, there was a new article on psoriatic arthritis and diet and weight loss, you know, it’s like, every month.
Cheryl:
I’m choosing to put my head in the sand on that. It’s like, low calorie diet, do not sign me up. I’d rather have arthritis. No, I’m totally kidding. It’s like, it’s almost like, it’s like the intermittent fasting ones too, where I’m just like, I will not be doing this. I will cope with my, if my disease gets much worse, I will consider it. But yeah, we all have the right to kind of say like what we’re willing to try for our quality of life and what we’re not willing to try, right.
Dr Saimun:
And that’s the importance of shared decision making. When you have that doctor-patient relationship, you know, you really need to talk through things and be like, “No, I’m not going to do that.” Just like, “I’m not going to do methotrexate because I don’t want to, blah, blah, blah.” You’re allowed to an opinion.
Cheryl:
Yeah. Oh, sorry.
Dr Saimun:
No, it’s okay.
Cheryl:
I was gonna say, when you said shared decision making, I’m so glad you mentioned that, because it’s something that as a provider, I know what that means. And I say provider, I just mean health, right? I know I’m not a doctor, by the way, for those listening. I’m an occupational therapist. But when we say shared decision making, I think health providers know what that means. But patients may not know. So, can you describe like, what does that mean?
Dr Saimun:
Sure, yeah. Shared decision making is where the doctor is not the only one running the show, right. Like, they’re gonna give their expert advice, their opinion on what’s going on. And you also have input in their decisions. So, in their med, that means their medication choice, you know, when you want to wean, when you — I’m not saying dump the doctor’s choices, and disregard what they’re saying. You can have a conversation with them about, okay, what’s the pros and cons of this? When can I get off of this? What do we do next? And so, you make decisions on your treatment based on that conversation?
Cheryl:
Yeah, and that’s really supposed to be the gold standard in rheumatology, you know, and I feel like — this is totally just a sense I’ve gotten, I’m curious of your opinion — but like, I feel like it’s more common in pediatrics and not maybe as common in adult medicine.
Dr Saimun:
Because parents want the best. Which parent doesn’t? Every parent wants the best for their child, right? You want to minimize the amount of meds and side effects, so they’re gonna question everything you have to say, which is not bad. As a doctor, you need to be able to come back and answer those questions. They’re real concerning questions. What is the long-term effect of this medication? And as a physician, you really have to say like, listen, we don’t know the details of this, but what we do know is X, Y, and Z. And so, based off of that uncertainty or whatever, we know we have to move forward with the decision.
Cheryl:
Yeah, yeah. It really is a relationship that you develop with your provider, which is why I always encourage people, if they have enough providers in their area, which I know for pediatric rheumatology in particular, is not a luxury everyone has but to get a second opinion and I just had someone in the support group, the Rheum to THRIVE group I’m facilitating who said, “I’m so glad I took that. I was annoyed at having to take the time to find a second opinion, but I did,” or just interviewed a different rheumatologist, and they’re like, “I’m so much happier now,” you know, so it’s gonna be a relationship you have for a long time with your doctor, so.
Dr Saimun:
Exactly. In the world of pediatrics, it’s pretty much your entire childhood, and then you go on to an adult rheumatologist.
Cheryl:
Yeah, yeah.
(Mid-episode ad)
I know my listeners are very interested in like, basically, the way I put it very simply, it’s like, all the tools in our toolbox. Like, tell me all the tools that you could possibly use on a daily basis to help manage your condition. So, what are some of the tools — let’s just start with integrative medicine, like, what are some of the interesting things you’ve found helped with RA?
Dr Saimun:
It’s been a trial-and-error process. But the four main things I would say that I always come back to, which are kind of the pillars of integrative medicine, is going to be nutrition, your sleep, exercise, and mind-body therapies. So, those are key. And I would say everyone has a different level of importance to those four. For me, sleep is actually number one, by far. If I don’t get good sleep, I am not only cranky, my joints hurt and I’m achy. You know, naps help a little bit. But I need my 8 to 10 hours, which is really hard when you’re a mom of three with a full-fledged career, you know, so I actually put an alarm on at the end of the day for when to go to bed just like I do when I get up because it’s really easy to keep watching those shows on Netflix.
Cheryl:
Totally. I’m the same. It’s really — I think right when you said like the four things, you know, the four tools — nutrition, sleep, exercise, and mind-body — I immediately had this idea of like a pie chart where you show like for one patient, it’s like nutrition is their main pillars, like, you know, takes up half of the pie chart. For someone else, it’s sleep, you know, so discovering that for yourself is so important. And how do you — how do you protect your sleep? Because there’s a joke in my family that I’m a sleep diva.
Dr Saimun:
There’s nothing wrong with that.
Cheryl:
No, I’m gonna get T-shirts made. Like, I was just talking about that in some of my other interviews. But like, and one of the ways that I — I mean, from a young age, Charlie has known that like sleep is important for mom and like, if that means he needs to be on the iPad for like an hour while I take a nap, I’m not going to feel guilty about that, you know. But talking to people who are moms feel — you know, so how have you protected your sleep?
Dr Saimun:
I think it’s been a learning curve. Just like you, I had a lot of mom guilt, like I need to get up before the kids so I can do my thing, you know, have breakfast ready, it’s just going to make my day easier. But it’s not. It’s not easier. I’m just more tired starting the day. So, what I’ve done is like you, we’ve told our kids like, do not get up at this time. We expect you to play, keep yourself busy, just don’t hurt yourself, you know. They’re kind of older now, so this is a real possibility versus before where it was more like, okay, the only thing I can do is just go to bed early, and wake up when they wake up.
But now, we will have like family movie nights on Friday and Saturday. So, it goes pretty late, like 10 o’clock for them is really late. And so, they know that do not wake mommy up at 6:30 in the morning on Saturday, because this is her time to rest. And so, we’ve set boundaries with that. And consistency is key because sometimes it works, and sometimes it doesn’t. But for the most part, they’re really great. And then my husband also has been super supportive when we’ve just been kind of trial-and-erroring what works, what doesn’t. And so, if I’m tired, he’s like, “You sleep in, and I’ll get the kids.” I mean, they’ll have cereal with sugar for breakfast, but I really have zero control at this point.
Cheryl:
You have to choose your battles, right? What I love is that you’re modelling self-care to your children, you’re modelling that you are worth investing your time, right, to take care of yourself.
Dr Saimun:
And that’s a mindset that you kind of really have to slip into. It’s not anything that I think we’re born with, I think it’s like you just work hard, you do what you need to. You’re there for everybody else, right. But then, I’ve seen on the flip side what happens when I’m not well, I’m cranky, everybody else is just cranky, because I’m cranky. You know, work is just hard. It’s sluggish. You’ve slept through the day, and that’s not healthy for anybody.
Cheryl:
Yeah. I totally, totally agree. And what about for you, what are some of the things that you found helpful for nutrition on the nutrition and exercise pillar?
Dr Saimun:
Yeah, so nutrition is just an overwhelming part of the pie like you mentioned, because there’s just like, “You do this diet, cut that out, eat this food,” and you’re like, if any of these were the magic, you know, equation to fixing my arthritis, why are there so many of them?
Cheryl:
I said the exact same thing before where I’m also like, you know, I’ve been gluten free for over a decade. It hasn’t had any effect that I’ve noticed on my RA, but it’s helped my stomach. And I know theoretically, everything’s interconnected. Yeah, but other people are like, “Oh, my gosh, I cut out gluten. And I have zero joint pain, like, right, zero.” And so, it’s worth a try.
Dr Saimun:
That’s amazing. Yeah, it is worth a try. I think it’s the symptom tracking is where this comes in. And I know you’ve taught others on how to do that, so that’s really important. I actually didn’t start that till about a year ago and I’ve had arthritis for many, many years now. And so, when you start to track your symptoms, and I just give my stiffness a number in the morning. And then, so if the number goes up from the day before, I can see like what did I do differently. And for me, I cut out gluten, it didn’t really make a big difference, thank God. So, I’m back to eating gluten, you know. I can enjoy my pastas and my bread. There are certain foods like wine triggers it, you know, that’s not really a food, but wine triggers.
Cheryl:
It can be a food to some people. [Laughs]
Dr Saimun:
[Laughs] Red wine will trigger it or just certain, like certain meat. I’ve cut down on meats. The more vegetables and fruits I eat the better, which intuitively makes sense, right? Like we’re humans, and that’s kind of what we’ve evolved with.
Cheryl:
Right, yeah, I know. That’s super helpful. I know that, yeah, I know that a lot of people are just very overwhelmed, like you start, with nutrition. So, I think I like your idea of starting, you know, I don’t want to begin putting his words in your mouth, like starting small and just tracking.
Dr Saimun:
No, that’s right. That’s right. Because if you do too many changes at the same time, you won’t know what’s what, right. So, and I’m not a big fan of the elimination diet. I just, I can’t do that with the way my life works. Like, if I’m in clinic, I can’t really — I don’t have like food options to — not a huge meal prepper. When I do, I’m great. But it’s not consistent at all. Or out with friends, the social aspect of it is really hard to stay on track with elimination diet. So, I just track my symptoms and work backwards. And that seemed to work for me.
Cheryl:
That makes sense. And what about exercise?
Dr Saimun:
Yeah, so for me, I have to have some sort of movement, right. Yoga is very helpful, because I think it helps stretch the joints. I actually love running. But and I used to run on high incline before I realized it’s not so great on my knees. And so, now I’m back to normal. So, I’ll just do like a mile, a mile and a half. And then I’m big on weights, because I know that a lot of strength training is great for bones and building up the strength in the bone. So, I tend to focus on resistance training, yoga, and then running when I can.
Cheryl:
That’s great. That’s great. Yeah. And I think, to me, whenever I teach people about the basics of self-management, I always say yeah, the three pillars for exercise for rheumatoid arthritis and related diseases are like stretching, strengthening and cardio.
Dr Saimun:
Exactly. There you go. I didn’t know I was doing that.
Cheryl:
You are. Check that off the list, yeah. Yeah. And the strength training is really good because we’re also — people with RA are more prone to like, muscle wasting, you know, and especially uncontrolled disease. And it just feels good. It feels, to me, it feels good to have like some cardio. Actually, the cardio is what feels the best to me. But I also do, I like the feeling of having a little bit more muscle, it makes it more, your body move more efficiently. So, it actually cuts down on fatigue, which is, it’s like unintuitive to some people, right. They’re like, “Why I have to like exert energy to feel more energy? Like what?” And then mind-body, I’m really curious, again, because you seem like, at least as we’re talking, like mentally resilient. ‘Cause I’m just like, I can’t even — like, I have one child. And that’s a lot, you know. And I’m not working as a doctor all day. So, I’m like, how, what are you —?
Dr Saimun:
You know, I didn’t know what mind-body therapies were until I entered the world of integrative medicine. So, that’s basically taking care of your mental health, right? That whether that’s journaling, that’s meditating, using guided imagery at night, there’s so many ways that you can address your mental health. And the problem with mind-body therapies is that there’s zero instant gratification with it, right. You sit down to meditate, and you have this what we call monkey mind. And I end up with like more to-do lists after my meditation than before. But that’s actually a myth. Like over time, you start to kind of calm your brain and just be in the moment of taking those deep breaths, feeling the cold air going into your nose, the warm air coming out; you start focusing on those small little feelings, rather than, “Oh, my God, I need to finish this and call this person and do this.” It’s, that will happen. That’s the rest of your day. But for now, focus on what’s happening in front of you.
Cheryl:
I love that. That’s been — that’s probably the biggest piece of my pie of my daily management. Well, I guess it fluctuates, right. It changes depending on how my condition is and what’s going on externally, you know, in my life context. There’s obviously external stressors like we were we renovated the house and moved this year, you know, at those times that was stressful. So yeah, that really affects, you know, and stress is very inflammatory. So, if you manage your stress and it’s super, super helpful. And yeah, for me, I always joked before when I didn’t understand what mindfulness and meditation was, where I was like, “I’d be the worst at that,” because like, I’m not, I’m like a high energy person. But it is like, it’s about — the thing that resonated with me when I learned about it was like, becoming the observing self. So, you’re not just the ‘self’, you know, walking through your life, you’re observing it. And so, you can be observing, like, if I’m taking a moment to like, sit and just observe my thoughts. Those thoughts could still be scatter brained, right? They could be like, “What’s going on for dinner tonight?” but I’m taking a moment to observe it. And then, in certain kinds of meditation, yeah, then you bring your focus back to your breath. And other times, you just say, “I’m just gonna be in the moment and watch my brain think of thoughts and not judge them, and not say they’re good or bad. And just allow them.”
Dr Saimun:
People think you just have to kind of turn off your brain when you meditate. And that’s such a myth, because the goal is to kind of just be present. And like you said, take that bird’s eye view of everything that’s going on around you so you’re not so reactive to the world.
Cheryl:
Yeah, yeah. And do you have like a formal routine with that?
Dr Saimun:
I, you know, every morning, I’ll wake up and just do like a quick six-minute meditation. I’m not even aiming for 15-20 minutes.
Cheryl:
That’s great. That’s more than I do.
Dr Saimun:
Hey, something is better than nothing. So, I have one song that I listened to that I’ve listened to for the past two years. And it’s just music. And I basically, I go through a certain kind of like a schedule of thoughts that I have to force myself into being, into thinking about compassion, gratitude, innate harmony. I think about being a healing presence to people. Gratitude, I think I said, as well as unconditional love, just for others, family members. So, I kind of walk myself those through those elements, and then kind of feel better by the end of those six minutes. So, I’m not already like, “Oh, I’m late,” you know.
Cheryl:
Oh, my gosh, that sounds amazing. Did you learn that somewhere? Or did you just tell it to yourself?
Dr Saimun:
I kind of tweaked it. But it’s something I learned through the fellowship. And I’m happy to teach that to others. But it’s called the heart chakra meditation. And it’s supposed to kind of make you more intuitive with the world, what’s going on around you. So, because I think all of us are very me-centric, right? That’s normal. You’re like, “I’m that, I’m this, I’m that.” But like, there’s so much going on around us. And so, it helps you be more interconnected.
Cheryl:
I love that. It reminds me a lot of self-compassion. I know it’s more than that. Because you’re talking about gratitude, too. And like connecting to like being a healing presence, but with self-compassion, this funny irony about it is it’s about taking a moment to provide yourself the compassion like that you would provide a friend but also, at least a part of the practice that I’ve learned through Dr. Kristin Neff, a psychologist who does a lot of research on self-compassion and teaches about it, is that you’re also connecting the fact that like, all humans have suffering, you know, and all humans will go through suffering. So, I am part of a group of, you know, a global population of people who suffer. It is not just me, you know, which can be on the one hand, I guess, depressing, to be like, “We all are suffering. Wait, this sucks.” Or you could be like, “Okay, you know what, it’s part of life.”
Dr Saimun:
And I think it’s a powerful notion that you’re just like, I’m like everybody else, you know, you are not immune. Nobody else is immune to this feeling.
Cheryl:
Yeah. Yeah. That’s, that’s how I tried to look at it. And I just, I realized I wanted to ask this earlier and forgot. But what is, in general, like, I think it’s very fascinating for people to think about what it would be like to be not just a doctor and a patient, because there’s people out there who are like, I’m a cardiologist and I have rheumatoid arthritis. You know, that’s like, not a related condition, although, cardiology is related. But, you know, like, what are some of the, I don’t know, I just would love to hear your reflections on being both patient and doctor.
Dr Saimun:
You know, that’s a great question, because I didn’t even give my moment — the time, like the time in my life to reflect on that question until COVID when things kind of just finally slow down, you know, so all of us had a second to breathe. I think, if I were to kind of look back at it, the one word that summarises it is ‘humbling’. Like, it’s just very humbling to be patient because in all of my training, all of the decades, decades of training that I’ve had, I think being a patient has taught me how to doctor more than anything else. Because you learn — you are basically in that person’s head, because you are that person. So, the same feelings of hopes and frustrations and fears, I have as my patients and their parents, I’m just channelling it in a way where I can apply it. I have a sense of understanding of where they’re coming from. So, I don’t dismiss feelings, if they don’t want to do something, you know, I try to, instead of judging, kind of coming from a judgmental point of view, you are more like, “Okay, help me understand why you don’t because I think we both have the same fears. What is your biggest fear?” And so, we kind of — I have that empathy angle much more than I did before this diagnosis.
Cheryl:
That makes complete sense. I mean, I wonder, I wonder if people are going to wonder, I wonder if others will wonder, do you ever disclose to your patients that you have RA?
Dr Saimun:
You know, it’s interesting that you asked that because for the first few years, I never did, I was almost like, ashamed of being like, gosh, I’m a rheumatologist. And my arthritis is poorly controlled. What kind of doctor am I, right? But I think there’s a lot of strength in being able to share my story. And then I started kind of realizing that every time the parent would be like, “My child does not want to do this injection.” I’m like, “Yeah, I don’t want to do mine either.” And I think that accidentally, maybe came out one day, and that’s when I first realized like, “Wait, you’re on injections, too. What do you do? Like, how do you handle it? If you’re doing it, maybe I should be doing it too,” you know. So, there is strength in my perspective, because I’m that person sitting there as well.
Cheryl:
Oh, absolutely. I know that in occupational therapy school, we were taught like — what was it called? Like, limited self-disclosure, or something where it’s like, therapeutic self-disclosure, like only disclosing something if you feel like it’s in the best interest of the patient. Which completely makes sense, right? Or they can be like, oh, I’m going to use this, like, 20 minute appointment to process my own feelings. But yeah, I think it’s really powerful. I think also, like, one of the questions I get one of the really basic questions is like, how do people put together a life with this condition? And just the fact that you’re working, the fact that you’re physically there.
Dr Saimun:
You know, it’s been an interesting road because my career has actually taken a pivot since this diagnosis, since learning how to live with this diagnosis. Because when — and I just recently left a job at a large Children’s Hospital. And one of the things that was really difficult for me was being on call because I told you, sleep is critical for me.
So. when I was on call, I was getting paged overnight, and I would wake up feeling groggy and tired, right. And so, that kind of went on. Every time that happened, I was on steroids. It followed every single week I was on call. And so after a while, you realize like, okay, this is bleeding into my work life now. How am I going to manage this and manoeuvre being a mom and having a career? I didn’t want to quit. I mean, I’ve worked so hard to get here. So, that’s kind of when the integrative medicine stuff, you know, bubbled in my head. And I thought, well, what if I can try to create a new type of practice where I do both rheumatology plus integrative medicine — we’ll call an integrative rheumatology — for kids, and kind of start this new journey for me where I control my schedule, but I’m also able to deliver the type of care that I think my patients would want, you know, because I’ve been on their side, I’ve been in their shoes.
Cheryl:
No, that’s, I mean, first of all, that’s incredibly inspiring. And it’s definitely something that I think a lot of people end up with — people with rheumatoid arthritis — end up needing to rethink their job setting. They may not may or may not need to rethink their entire career choice. But what setting is the best for my lifestyle?
Dr Saimun:
And that is not an easy question to answer overnight, because for me, I felt weak initially. I’m like, gosh, I’m not able to keep up with my peers. I’m trained just like them. But I can’t do this service because it’s affecting my health. And that weakness, that feeling is not great. And it took a while to kind of get over.
Cheryl:
There’re so many toxic beliefs in medicine, I think. From a young, or from early on, from what I’ve heard in medical school, it’s like everyone brags about how little sleep they got, right?
Dr Saimun:
Exactly. Exactly. And now if I brag about it, I am not in a good place with my arthritis. Like, you just have to kind of learn to put yourself first because how else are you going to help others if you can’t help yourself?
Cheryl:
No, exactly.
Dr Saimun:
You’re useless.
Cheryl:
Right, and learning how to challenge those beliefs. And I know that — I don’t know everything in medicine, but I hear things on Twitter about, you know, it used to be people were on call for like 48 hours kind of thing. And now, it’s like they’re starting to have more boundaries on that and limiting — I mean, there’s still, things are not — definitely, the system for becoming a doctor is not kind to people who have health issues.
Dr Saimun:
I agree. And it’s kind of like a badge of honor if you’re able to, you know, push through this 40-hour call and come back again in two days and do the same thing for three years straight, you know. When you’re in the thick of it, you don’t think twice you just do it, you’re like, this is what I need to do to get to my endpoint. But when you take a step back and realize that, is it affecting you in a bad way, you know. Sometimes you can control it, sometimes you can’t. Like, you’re not going to graduate from residency, unless you put in that work. That’s the reality of it. But on the other side, when you become this attending doctor, and you become an adult, you’re like, is this what I want in life? Is this that, you know, is this kind of where I see myself for the next 15, 20 years?
Cheryl:
And it’s that sunk cost fallacy, where sometimes you’re like, well, geez, I just put so much time and money and effort into something. I don’t want to like, pivot away from it entirely. But yeah, like, I think it’s really important to question those beliefs, whether that’s in a medicine, career setting or law, you know, I have had people on the podcast who are lawyers, with all sorts of careers, and yeah.
Dr Saimun:
And it’s the same type of environment too, right? It’s like, you just put in the work, put your head down, and don’t make a squeak about how you feel.
Cheryl:
Yeah, it’s so inhumane. It’s just, and it’s just ironic that you are worried about being seen as weak, when you are actually pushing through so much more pain and fatigue than the other doctors who you’re worried about judging you even know about, you know.
Dr Saimun:
Yeah, it’s kind of that people pleasing, I don’t even know what the complex is, but definitely had it.
Cheryl:
Yeah. Well, I mean, certainly, I would say, in my experience, I always like to be the — I like to be the exception, you know. Like, oh, well, other people couldn’t do this, but Cheryl could. I was always like, “Oh, like, I’m conquering rheumatoid arthritis.” I know that there’s a lot of like, people who find inspiration in those kinds of messages and totally, you know, whatever works for you works for you. But I do think that it’s been helpful for me as my disease has progressed, you know, and I’ve kind of had more ups and downs than initially, to recognise that, like, sometimes that’s not the best thing to push yourself so hard that you pay the price, your health pays the price. You only have one life.
Dr Saimun:
Right. Exactly, exactly. And it is a trial-and-error process. I’m not saying like, go into every job and be like, “I need like X amount of sick days,” you know. I think you need to know where your limit is. And once you figure that out, then you stick to it.
Cheryl:
Yeah, yeah. You seem to be good at that, having a good ability to do that. I’m like —
Dr Saimun:
Oh, no, it’s a work in progress. I’m by no means perfect. I mean, I was on steroids every month I was on call, so, a lot to learn.
Cheryl:
That’s rough. That’s rough. And actually, I forgot to ask you this earlier, but I’m curious, what made you interested in pediatric rheumatology in the first place?
Dr Saimun:
Right. Yeah. So, you have to kind of — it’s a two-part decision, right. So, first, you decide to go into pediatrics and then you decide to go into rheumatology. So, I didn’t know from medical school that I wanted to do pediatric rheumatology. So in medical school, I thought I wanted to be a surgeon. But then that was one of my first rotations. I was like, oh, I don’t think this would this is for me. Pediatrics is actually my very last rotation. And I love the feeling of being able to connect with families, educate them, just that whole connection that you get. And then throughout residency, I realized I liked the chronic care. I know that a lot of people, a lot of my colleagues went into like cardiology, ICU, the neonatal ICU, but for me, I love that long-term connection with families. I loved the physical exam. I loved immunology, so kind of all came together with pediatric rheumatology.
Cheryl:
That’s wonderful. And there is a shortage.
Dr Saimun:
Yeah. There’s, I think, about 350 of us in North America. They’re working on, you know, working with Congress to try to increase more spots, try to maybe pay off loans for people who decide to go into the fellowship. There’s different ways of going into it. But at the end of the day, any doctor who takes care of a child with chronic illness, there is going to be challenges involved. And complex care, in this case, with diseases that not everybody has. There’s not a lot of research, a lot of funding doesn’t go into it. There’s a lot of barriers to good care here.
Cheryl:
Well, in that, yeah, I’m curious. Yeah, I always say like, I’m amazed that anyone wants to go in there. And I’m very grateful and in awe of anyone who wants to go into rheumatology in general, whether it’s pediatric or adult because I do feel like a lot like what made me want to become an occupational therapist is helping people overcome something. And like, you have a starting line and a finishing line. And even though actually it’s a little more complicated than that, because I did actually want to work with developmental disabilities which don’t have a finish line, right. They are a chronic condition in the sense that they’re, you know, there’s something that you’re diagnosed with and they don’t go away. But in general, you can maybe have some like distinctive leaps, like you didn’t know how to do X-Y-Z, and then we taught you how to do X-Y-Z. And but with, so I think a lot of people who go into medicine, whether it’s straight up becoming a physical therapist or going into like, real, you know, becoming an actual — actually I shouldn’t say real, sorry — becoming like a doctor, medical doctor, they are motivated by the desire to, you know, fix a problem, right? You know, in the cases your heart doesn’t work, I put a valve in it, your heart works now, you’re good.
Dr Saimun:
Right. Move on.
Cheryl:
Yeah. Whereas in your case, it’s like, you have this, you know, and so, I mean, I think it does take a totally different mindset to be like, we’re going to, you know, improve what we can.
Dr Saimun:
I’m so glad that you mentioned that, because I didn’t realize that going into rheumatology. You knew that. Wish you told me that before.
Cheryl:
I’m glad you didn’t know it because you wouldn’t go into it then.
Dr Saimun:
But as a patient, I actually learned that it is so important to teach these children coming into our clinics that you are not going to get — it’s not instant gratification. You are going to have to work to take your medicines, learn the names of, you know, the meds, when to take it, why you’re here. And it is a journey. It is not a destination of like point A to point B. It is a journey that you’re gonna learn to navigate; you’re gonna have ups, you’re gonna have downs. But this is the reality of having a chronic illness.
Cheryl:
And it’s a rude awakening for some people, right? And that’s why I think mental health care is so, so important to be done and congruent with, with regular health care, because it’s like with, you know, with the medical side. Because it’s like, how — I try to make everything as simplified as possible. And so, I actually made this chart once of like, what are the solvable problems? And what are the unsolvable problems? You can like, you know, sometimes, like, if I have stiffness that’s like more mild, it might be like a partially solvable problem today, because I might be able to say, like, “Oh, I can put on like this compression glove. And that really reduces my stiffness. And it’s functional now.” So, that’s like, okay, that’s a little bit solvable. But then like, there’s always, with a chronic illness, going to be some things that are not solvable. So, learning to cope with that.
Dr Saimun:
And the control factor, I think, we all want to have some sense of control, which is why people gravitate towards the supplements and the nutrition because they’re like, “We can do that. We can control that part.” But at the end of the day, your immune system is your immune system, so we’re going to have to do our best to try to wrangle it in and fix it.
Cheryl:
Yeah, yeah. Yeah, I was gonna also about kind of, I was mentioning like the, I don’t want to be too negative about the culture of medicine, but this kind of culture overall of like, pushing yourself, you know, no one’s allowed to complain, like, doctors are super tough. Doctors don’t go to the doctor, you know.
Dr Saimun:
Right. I know, I’m guilty.
Cheryl:
Yeah, no, it’s so common. But I’m curious, and I didn’t prepare you for this question so totally feel free to pass, but I’ve also had some people from different cultural backgrounds. Like, I’m a white woman. And, you know, and I’m curious if like your cultural background has, like affected like your experience of having chronic illness?
Dr Saimun:
That is a great question. I think, yes, it has. Because I’m Indian, South Asian, so I think when people have a chronic illness — and it might not be generalised to the South Asian culture, don’t get me wrong. But for me, I think when you have a chronic illness, it’s more kept on the down low. It’s not like this publicised thing, like, “Why are you talking about it?” It’s more like, “Just keep it on the low and then we’ll try to figure it out. And by the way, you should probably be eating a gram, you know, of turmeric every hour and eating this.” And there’s like, so many, so much input that everyone just loves to give.
And so, because we’re such a family oriented culture, right, like, grandparents, and parents, and this, and that. But at the end of the day, I don’t — for me, it wasn’t an issue because I grew up here. So, I was like, listen, there’s no reason I need to hide what I have. I am going to start these medications. And this is how it’s going to be. And also, I was so young when I was diagnosed. I was like, late 20s, early 30s. And people were like, “You don’t have that. That’s something like my grandmother got,” you know, and so a lot of people are just also in denial of the whole thing, so it’s kind of brushed under the table, you either keep it on the DL or you treat it like it’s nothing. And so, that was kind of hard for me.
Cheryl:
Yeah. And I had Suruthi on, who she has started a non-profit called Chronically Brown. I don’t know if you’ve heard of it, but she is a non-profit working towards tackling the stigma of disability within the South Asian community. And yeah, she shared so many interesting insights. And again, there’s no — I mean, there’s a billion people in India. Yeah, you know, a lot. So, it’s not like there’s one monolithic culture, but I just, yeah, I wanted to hear know your reflections on that because I have heard the same thing. You were saying that, you know, that it’s a little bit like, invisible disabilities are even more invisible, or maybe there’s a stigma against talking about them.
Dr Saimun:
Right. And they’re like, “Is it contagious, an autoimmune disorder? If I marry you off to this person, are they gonna get it?” You know, it’s very interesting.
Cheryl:
Yeah, it’s not — maybe in general, you know, I think a lot of us struggle with it being seen as like a weakness.
Dr Saimun:
Exactly. And that’s a good way to think about it. It’s a weakness. It’s not like a strength you carry around.
Cheryl:
Right, right. Yeah. Well, thank you for sharing about that. And I also wanted to know, in general, one of my favourite questions to ask my interviewees, whether they’re, you know, a health provider or a patient, or in your case, both, is what kind of words of wisdom do you find helpful to give to the newly diagnosed, because that’s why the population is so near, you know, to my heart.
Dr Saimun:
You know, it’s good for new patients to hear these perspectives. I think, for me, it’s don’t have expectations on yourself and on the disease, because everyone’s course is different. What works for someone might not work for you. You might be on seven biologics, you might be on one. I think it’s normal to have hope coming out of that clinic visit, right. Like, I really hope things are gonna go well, and to have optimism because that’s also part of the mental health part of it, to be optimistic. But be realistic. And so, don’t have expectations that, “My course is going to be X, Y, and Z. And then I’m gonna be all good, and never have to deal with this again,” because I guarantee you there are going to be little bumps in the road. And if you have that notion that this shouldn’t be happening, you’re going to — you’re setting yourself up for disappointment.
Cheryl:
That’s so — I wish I had learned that because I, when I got diagnosed, I was very lucky to have like, kind of a best-case scenario after my diagnosis, which was, you know, went on methotrexate, went on Enbrel, went immediately into medicated remission. Good. So, in my mind, I didn’t think that, why would that change? You know, I wanted medicine. Like, I didn’t know that your body could create antibodies to the medicine. So, it didn’t even cross my mind, like, so I just thought, “Oh, this is kind of like, you know, some people take insulin the rest of their life if you have diabetes. I’m just going to take Enbrel and methotrexate for the rest of my life. No worries.” And then maybe, yeah, when I want to have a baby, I want to take off the methotrexate. And then when my body created antibodies to it seven years later, that was such a rude awakening. It was like, no, no, hold on, I already figured this out. I just take Enbrel. Like, this is not —
Dr Saimun:
This is not happening.
Cheryl:
Something must have been wrong. I literally thought like, my medication must have been like, you know, not kept to the right temperature or like something. Like, is my refrigerator not working? Like I didn’t know, right.
Dr Saimun:
It’s not me. It’s them. [Laughs]
Cheryl:
Medication didn’t — I didn’t fail the medication. Medication failed me. Yeah. So, yeah, that’s so great. Not having too many expectations. And it’s just, it’s hard to know how to function, how to plan your day, without expectations. But to not cling so tightly to them and not clinging to the idea that there’s a one-size-fits-all, that you just need to find the right person. And unfortunately, there’s a lot of people on social media who prey upon people with autoimmune diseases.
Dr Saimun:
Exactly. I was just gonna say that.
Cheryl:
Okay, tell me what’s your thoughts on that.
Dr Saimun:
I think it’s so sad. Because when you’re in the most vulnerable position of your life, right after this diagnosis, you’re like, I don’t want to be on these medications. But at the same time, I want to get better. And this person is saying that this diet or this pill or this whatever cured their RA or cured their lupus, and I just want to be like, no, because then this would be publicized, everyone would be on it, right? Like, if it’s too good to be true, it’s probably not a thing. And that’s where your healthcare providers are really important. Just doing your research as a consumer of the world is very important, right. Like, how accurate is this information out there? Sometimes I’ll see stuff and I’ll be like, oh, that’s not gonna — that cleanse is not going to fix your arthritis. I mean, try it. But please be on your Enbrel as well.
Cheryl:
No, it’s really, it’s really tough. Because I’ve also, I think there’s like a grey area. Like, there’s the, there’s some people who are like truly just charlatans who are like, “I know that this is wrong, but I’m going to make money and profit off of people’s pain.” And that’s like the really black and white part, right, because those are the not good people. But then there’s the people who have like really good intentions, and they think like, because something worked for them, it will work for others. And again, if you have no medical training, you would be like, oh, yeah. Like, oh, my gosh. I’m so excited because I went vegan and my RA went away. No one else is going there. No one else is — the problem is no one else is teaching patients about, you know, unless they get referred to a registered dietician, so you could have the best intentions but not understand the complexity.
Dr Saimun:
Right. And that’s where that expectation then comes in. If your expectations are you’re going to be completely fixed from this, you’re setting yourself up for failure again, because that’s not reality. That’s just not reality. If you look at all the patients together in the world that have arthritis, everyone has a different journey. And there’s not one fix for everyone.
Cheryl:
No, no. And it’s better to look that reality in the face than to spend your whole, you know, this is what I try to teach to people, it’s like, you know, you could try to spend your whole life trying to find that silver bullet that’s going to make your rheumatoid arthritis go away. Or you could spend the limited time you have left focusing on functioning the best that you can, having the best quality life you can, even with this diagnosis. And it’s up to you. Like, if it’s if it’s meaningful and important to you, and you’re like, “No, I want to find a cure or like a something that’s gonna make it go away,” and that becomes something meaningful in your life. But I think it’s like there’s this presupposition underneath that to say that I can’t have a good life unless this is cured or healed. And that’s not true.
Dr Saimun:
Right. Right. And I think that is a normal feeling, especially in the beginning, after the diagnosis. You’re like, “Why me? Why do I have to have this? I don’t want this.” But the truth is, it’s there, it was diagnosed, and we have to fix it. And medicine, we”ll try to do everything we can with modern medicine and conventional therapies to get you to a place where you feel like you’re living up to your potential.
Cheryl:
Yeah, I love that. Oh, that’s so, that’s so good. And then was there anything else before we wrap up that you wanted to touch on or share with the audience? I’m sorry. I always like to have that anything else time. Because like, when I’m being interviewed, sometimes I’m like, “Oh, I didn’t get to say that,” you know.
Dr Saimun:
No, I think the biggest thing is changing the mindset from ‘This is my expectation of what’s going to happen, I’m going to go from point A to point B’ to just learning the journey of it, and then also sharing it with others, right? Like, I think it’s so powerful to be able to be part of support groups and the Juvenile Arthritis Foundation or the Arthritis Foundation, it’s really important to share your story because it gives hope to others. And that’s what’s helpful. And that’s partly why I kind of branched out and did my own thing with starting my own private practice here in Houston, is because that is the one message I think anyone with a chronic illness needs to hear, is that you can live and thrive, just like you say, with a chronic illness. It’s just making sure you have the right education, the right support, the right — and just being empowered. And that’s not going to happen overnight. It is a process; it is a journey. But me as a doctor, that is what I’m here to do. And me as a patient, that’s what I’ve learned. So I can doctor you to do that.
Cheryl:
Right. I love that. I love that. And what’s the name of your — I know your practice isn’t all the way, it hasn’t started yet, but.
Dr Saimun:
That’s right. It’s starting in August, so just — what are we — like, two and a half months away now? It’s called Rheum to Grow; rheum with R-H-E-U-M.
Cheryl:
You know I love a rheum pun. I love it, yeah.
Dr Saimun:
Yeah, I ruminated on it for a while. Yes, it’s Rheum to Grow in Houston. And so, if you’re in Houston and you’re interested in having kind of an integrative rheumatology approach, I’m happy to see you. That’s actually my website is www.rheumtogrowtx.com, because it’s in Texas.
Cheryl:
Is it just pediatric rheumatology, or is it —?
Dr Saimun:
For now, it is. Yes, it’s integrative pediatric rheumatology and I have a clinical hypnotist to help with chronic pain. I have a nutritionist. I’ll have an Ayurvedic practitioner who does kind of nutrition based on your body type, your personality type. So, there’s different avenues to kind of make you feel your best.
Cheryl:
You should get an occupational therapist too.
Dr Saimun:
You know, girl, you need to move here.
Cheryl:
I know. The weather, Seattle’s having like the wettest spring? Oh, it’s just, yeah, I mean, Houston is definitely sounding appealing. Although, in general, there’s some things about Texas I don’t like.
Dr Saimun:
Agree. I agree.
Cheryl:
I mean, no where’s perfect. But I love that. And I think, yeah, oh, that’s awesome. I’m excited for you.
Dr Saimun:
I’m excited. It’s the next step. And I hope to like really make a big impact for these kids coming through the clinic, you know. And it’s not just for kids who have rheumatic illnesses, I can still apply integrative medicine to like ADHD, migraines, back pain, anxiety. I can help you with that part as well. I’m not gonna be managing your meds, but I can help you with everything else.
Cheryl:
That’s really important for people to understand because you are trained as a pediatrician right, and you have an additional specialty in rheumatology, but you could see pediatric clients. Sorry. I’m telling you what I think you do. Patients, patients, sorry. It’s funny, in OT, for some reason, there’s like this, like, some people call people clients and some called patients. It’s interesting. But yeah, patients. Yeah.
Dr Saimun:
Literally little people, like little clients.
Cheryl:
Or kiddos. Like, yeah, there was one — there’s this long thread on one of these like social media sites of like, “Should we be calling our patients like kiddos,” because you’re like, oh, I have some kid, like, “Hey, my kiddos here,” yeah, and it’s funny because I love pediatrics. That’s why I went into work in like pediatrics, but then now I’m doing — I also love adult so I guess I love everyone. But yeah, I’m getting ready to volunteer this summer at the Juvenile Arthritis camp in Washington state where I live. Yeah, I do it like, I mean, I’ve done it every year. I guess I was gonna say I do it every year, but I don’t because they didn’t even exist — last year didn’t happen, and there’s a few times I missed it. But it’s just, it’s wonderful to, you know, I think they do connect with the fact that I can say like, I’m a patient, you know, I have arthritis.
Dr Saimun:
Exactly. And then people are like, “Wait, you’re not just giving me advice. You have actually lived this advice,” you know, it’s totally different. You have such street credibility.
Cheryl:
Yeah, what I also know, what I have noticed is as a patient, sometimes I’ll be like, saying something like, “Oh, well they don’t understand,” or this person — you’re tempted to say that right, like when you know it’s an invisible condition. Like, I could be talking to, and actually was, I had had a situation where I was talking to somebody who was a doctor that I didn’t know also has rheumatoid arthritis but because it sounds like, “Well, you guys don’t understand,” and like actually… I’m like oh, my gosh, you know, we all have to challenge those like mental errors our brains want to make which is the, “Oh, okay, if I don’t know that they have RA,” even though I’m aware and I tell people all the time, “You can’t see it. It’s an invisible illness,” you still make those errors you know.
Dr Saimun:
It’s okay, we’re all human.
Cheryl:
Exactly. Self-compassion, self-compassion. And so, where can people — I know you have, in addition to the Rheum to Grow clinic website, you also have some social media. Where can people follow you?
Dr Saimun:
Yes. So, I am new to Instagram, okay, so don’t judge.
Cheryl:
No, you are doing great.
Dr Saimun:
My handle is @RheumtoGrowTX and I try to spread as much information I can about pediatric rheumatology to help families especially when they’re newly diagnosed, not just with arthritis, but your lupus, you know, it’s a lot of info to put on there. So, get ready for more.
Cheryl:
Yeah, is there rheum for more?
Dr Saimun:
There is rheum for more. [Laughs]
Cheryl:
Sorry, I can’t stop it. We’re talking about rheum, like R-H-E-U-M.
Dr Saimun:
That’s right. Hopefully, you know how to spell rheumatology. That’s the only way this works.
Cheryl:
Yeah. I know. Oh, that’s so funny. Anyway. Well, thank you so much. I mean, I know you have limited time just with being so busy setting up your practice, and having three kids, and taking care of yourself.
Dr Saimun:
That’s right. No, thank you so much for having me. I hope this has helped at least one person out there to realize that you can have a career and kids and live with this diagnosis. But yeah, thank you.
Cheryl:
Oh, no. And I just, I hope that your treatment plan — I mean, I know that everyone’s going to have ups and downs. But I do hope that yours, this becomes a little bit smoother, you know, and not maybe quite as many lows as what we hope for.
Dr Saimun:
Right, right. No, thank you. I appreciate it.
Cheryl:
Yeah, well, don’t forget to follow Dr. Singla online and I will put all these links in the show notes. But for now, I will say goodbye and thank you again.
Dr Saimun:
Thank you. Bye.
Cheryl:
Bye.
