Decoding Chronic Illness: A Rheumatologist's Personal Experience

But hi and welcome , how are you ?

So, I am board-certified pediatric rheumatologist and most recently I added on extra training in something called integrative medicine , which focuses a lot on lifestyle , incorporating lifestyle things into having a chronic illness . And so I am from Houston , Texas , and I have rheumatoid arthritis as well .

And a lot of people think that I went into pediatric rheumatology because maybe I like kids , I have arthritis , it makes sense . But it's actually not that route at all . So I would say my journey was a little bit of a backwards take .

I love children , I loved immunology , I love the physical exam , so I went into pediatric rheumatology and then , after becoming a full-fledged rheumatologist , is when I got my diagnosis of rheumatoid arthritis . So it was quite backwards , because most people have an illness , get inspired to do research in it or specialize in it and then they become that specialist .

But I was already a specialist before ever getting diagnosed with it . So it's a little bit of a unique take , I would say , on having an illness .

And rheumatoid , and that's the reason for that is because rheumatoid arthritis acts a little bit differently than juvenile idiopathic arthritis , certain subtypes and I started getting symptoms , probably like my first year out of training , where I would get some stiffness in my hands , a lot of fatigue and I think a lot of us just to read that to life like being a

woman . I had my second child at that time . I was trying to balance being a real doctor with a family , a career , so I just thought it's that . But then in the mornings when I couldn't wake up or had trouble bending my fingers and kind of grabbing my hairbrush , that's when I realized that there's something probably a little bit more happening .

And that's when I reached out to an adult rheumatology colleague who kind of squeezed me into her lunch break . I wasn't even . I was like a pseudo patient , you know , like like a drive by , like let's just go in , let's see . You know , we'll give you a yes or no .

And sure enough , she was like I'm concerned , based on your history , based on your exam , let's get some labs . And which led to the full fledged diagnosis of RA . Oh , I can't hear you for some reason .

And it turned into like what was probably going to be like it's okay , you're fine , I'll you know , if something happens , call me in six months . It turned into a very long visit of this is a real thing for you and what are we going to do moving forward .

And so it , by the time I got my diagnosis from when I was having symptoms to my actual diagnosis , it was probably six months or so , Six months of just sitting there and kind of thinking this will go away , this will go away , and finally it didn't go away . So I was a bad patient . I was a bad patient from day one .

I should have talked to my PCP and said , hey , I have pains . They would have started the work up . I probably would have gotten into a rheumatologist at that six month mark anyways . But that's essentially when I got the diagnosis .

And I want people to understand that that is so far from true , because a lot of times we spend even years pretending this is not happening .

But I think it's important to realize what's the difference between me pushing through it and persevering versus . This is a red flag of something actually , that something might be wrong .

Right , and to me I didn't know that , I didn't know what the difference was , and unfortunately I found out later that this is what it was , and we all know that the longer you go untreated , the harder it is to kind of tame the arthritis down the line , and so I didn't know all that .

Now it's all hindsight , right , like I can put the dots together , but I didn't at the time .

But in reality it took me eight different medicines biologics to get to the where I am , and to say that like failure is not really a comfortable feeling for me is an understatement . Right , like for anybody , you don't feel good when you try something and then you fail .

You try something , then you fail times eight and it's been a learning curve and I think I've had to give myself grace and patience through the process and that it's not really anything wrong with me . It's just , unfortunately , this is the way it is , but I shouldn't give up .

You know , we can still live a seemingly normal life .

I'm still the pediatric rheumatologist I want I set out to be . In fact , this journey has changed the way I think I handle the illness and teach patients these ups and downs that will happen Like , but they don't represent the entire lifespan of of your diagnosis .

How do you decide that a medication is just not the right fit ? It's time to move on ?

That means when my hands touch your joints I'm not feeling active arthritis . Your range of motion is good . That might mean that we hit partial remission Right . So that might . It might not be to the point that I like it , but I might use the word partial remission . That's still not good enough for me .

So either I add on a different medication or at that point we say , okay , we've maximized the dose , We've maximized the frequency . This is the longest time I've allowed your body to be on this . Now it's time to move on to something else . So we just we kind of have to play by ear . That's the annoying part about this .

You start with one medication Typically that's like your methotrexate and proxen steroid , something like that and then , if that doesn't work , then we go up the pyramid , and and by up the pyramid I mean we start adding biologics . Now some Rheumatologists are trained differently . Depending on where your arthritis is and how aggressive is Aggressive it is .

You go straight to a biologic , you go right up the pyramid and If that one biologic doesn't work , then we add on methotrexate . Typically you don't layer two biologics together because it can suppress your immune system way more than we'd like it to . But methotrexate plus biologic is okay .

So for some of my more aggressive ones , yes , you're on two injections a week , or two , you know two injections here and there , but it's just . I always say we have to be as aggressive as your immune system . There's no , it's not an even playing field , unfortunately .

There's not much we can do about that , but it is what we have to do to put you into remission .

So what works for you works for you , congratulations . But the immune system is built , our genes are built in a certain way . Where that might not work for me , you know , like maybe blue hair won't look good on me , so sorry , that's my One of my three little's in the back . Okay , yeah , but realize .

But and it's not so black and white we live kind of rheumatologist in general , live in the gray area . It's whether it's your diagnosis , whether it's the medicine we're treating . We kind of play it based on what your response is , and so we got to find what that risk , what that combo of meds is .

Maybe it's one , maybe it's two , maybe it's lifestyle plus these medications , that you just need it all .

And rheumatology is just fascinating to me because it's one of the few fields where Labs and imaging are there but your hands and your ears are what gives , gives you more and more clues , because we need to be really good At the physical exam , we need to listen to the story to kind of figure out what's worrisome , what's not .

You know , labs and imaging are always there to support , to support what we're thinking . So that led me and I'm very detail oriented , like to just in general have always

been . So . Immunology , like the joint count and all that kind of stuff I was fascinated by it makes for very long visits , but it's okay , I'd rather know everything about my patients than kind of guess .

So that was , that was the pediatric rheumatology kind of route , traditional route , and then , after my own diagnosis and after failing , medicine after medicine after medicine , I felt like maybe there was a little bit more to my overall wellness other than just the silo of rheumatology , right like I'm a person at the end of the day .

I have Kids I you can hear them in the background I I like to go out and eat with friends . I'm a social person , you know . I in that might mean that I stay up later than normal and but I never understood how those Interplayed with my overall illness and integrative medicine kind of allowed me to have that lens of Maybe .

If you don't sleep eight hours a night , you know for most nights You're gonna flare like . This is not good for your overall health and that is something that you can control . Right , that's not somebody else giving me the locus of control . I decide when I go to bed . So just changing my mindset around .

This is kind of what works for me , this is what doesn't . It was game changer for me . Game changer .

And that's been hard for me to kind of swallow because I came from a point where , yay , I'm in remission and this is getting boring , right , like , I take my medicines , do my labs , it's all good .

But then , after the flares , I kind of felt very Defeated almost , and I had to Retrain my brain and to think , like this is part of the process , we're gonna get back to remission .

I need to do my part in adding to that right , so that meant getting to bed on time , eating better , leaving parties at a certain time , right , so I can get home , and that was just kind of a real talk with myself . And now I'm finally at a place where I can predict when I'm gonna flare .

I know exactly what I need to be doing , or even like , even through different social media outlets or support groups , it's what are some other things we can do besides just take medicines for the aches and pains , because that's , I think , part of the long haul right .

But I think what we need to do is look at the bigger picture and it's so important . Right movement , in that our bodies can handle right , is important to get that stretching in . If we just sit around all day , we're going to hurt that much more .

That's probably why I pursued integrative medicine , because these aren't things that were taught To view in like it's either this or this type of route is where we live currently , and it's mind-blowing to think that you can have the best of all the worlds of therapy out there , I I like the idea of acupuncture for patients that need it .

There's good data for patients with osteoarthritis or just low back pain or muscular musculoskeletal pain in general . Like , if it's going to help your symptoms , why wouldn't you try it and notice ? I said help , not treat everything Right , and so I think wrapping your head around this works and being open-minded about it is what matters .

I try to get massages when I can . Obviously it's financially and like time-wise it's . It's a big commitment , but if I could do it like once a month , I I try to get that in because it helps me also just from a relaxation standpoint , so that really helps me . Yoga is a big one for me , just like you said , to keep that range of motion going .

That stretching Also hits the mindfulness component of just kind of being still because I'll go into yoga , like I need to do this , I need to do that , and then I come out and it's like so that was . That'd be number three .

I think Number four of having the mental discipline of knowing when to say yes to things and when to say no to things , especially like having my own practice . Now you just want to be a yes woman and say yes , yes , yes , yes , yes to everything . But that's just , it's not the reality .

And I , I did that initially and I realized what a Detriment that was , to my help , because mentally and physically , you know , trying to fit in a bunch of things , I couldn't do that , so I had to put some boundaries in place . That was number four , number five , I think . We did the physical stuff , the mental stuff .

But I think the social support is also critical , like being around people who don't understand why you don't want to be out till Midnight , probably not . Or like they judge you or they're like oh , come on , you're too young not to be out till midnight , you know , like I don't , you don't need that energy , I don't .

I also shouldn't feel like I need to explain myself to you . I 100% .

I don't think any of any human is okay after not sleeping . It's not normal . It's not normal . We normalize these things and they're really not , and so for me it's a lack of understanding . I don't think they mean it personally . I think it's more of a lack of understanding on their end , and so I just move right along from that .

Stress is good to a certain point because it pushes us to do things like finish tasks and get stuff done and be a certain way , but at the same time , when you live with it chronically and the worries it's not healthy for our immune system , it kind of pushes you over into this inflammatory state that people with arthritis it's the last thing they need in their

life is more information .

I'm very content with a tea and a blanket on my couch on a Saturday night , and that's okay for me , like I have no problem , just kind of slowing life down because I realized that where I need to put energy in is with the people that understand me and care about me , and so that's where my efforts are .

But at the same time , like when I'm looking at my kids and like if they want to do that , I'm all for it . If they don't want to do that , I'm all for that too , because you determine what your values are . That's , I think , where things got lost in translation coming over from India to here .

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So I , after my diagnosis , like I said , I pursued integrative medicine fellowship and just last year I decided to kind of be brave and I thought , you know , day to day , I was living my life as an arthritis patient , but I was also living a very parallel life to my own patients and I realized that we were both wanting the same thing , which is someone to

not just listen to our joint problems and our fatigue problems , but also our whole life . Like how is this going to fit into our whole life ? Because I wasn't going to do the other way around , I wasn't going to dance around the arthritis , right ? So I decided I need to create a practice where I give that space for families .

So they come to me yes , of course we're treating the arthritis . However , we need to right , we're doing labs , imaging all that . But then I also do the practical stuff . Like , okay , what are you going to do when you have a flare ? You're traveling abroad , or you're traveling for a Christmas break , for a week , what are you taking in your bag ?

Like , so the real , real life stuff I address . We do a lot of mindset work as well . So what are you going to do when you flare and you're because you're stressed . How are you handling your stress ? Are we brushing it underneath the rug or are we doing something daily ? So I address like the mind-body component .

We also talk a little bit about the diet In kids . I most definitely don't like to restrict or push any sort of specific diet . We just talk about kind of what the anti-inflammatory foods are and how we expose children to that kind of daily . And then also the sleep component . How do we optimize sleep habits with the era of iPhones and screen time ?

That's been very difficult . And then in aromatherapy I incorporate as well Kids love that right before bed . I do that with my own kids . Supplements , you know I do .

I don't do it to treat the overall condition , it's more the things that I think are missing from your life , and for most people that's vitamin D , especially if you've been on steroids for a while . I'll check a level to see where you are . There's some newer data coming out about probiotics as well and the gut microbiome . So it's .

I always think about risk benefit analysis , like what's the benefit of taking it versus the risk ? So as long as the benefit is higher , I'm all game for it , say .

The third one I think about is fish oil as well , because , again , it's not that it's going to fix all your inflammation right away , but for the long haul it helps lower decrease of things like heart disease , stroke , hypertension , all those kind of things .

So I definitely like to keep the regimen as simple as possible but for certain people , based on kind of their lifestyle I do talk about the various supplements for them , and some people are open to acupuncture for pain or yoga or things like stretches . I make sure that we have .

We work with a good PT who understands arthritis as well and what type of exercises you could be doing for that .

I absolutely hated her , and part of it was she wouldn't touch me and part of me was like you need to touch my shoulder , you need to feel where the problems are . And the other one , that's what I was used to her doing , but she was fully booked out after my surgery for two months .

So I had to go see this other one and as soon as I could , I went back to my original . And you know , I think it's important to find a good fit for you that understands what's going on with you .

So we try to do kind of quarterly events to get all of them together to do something fun , like not sit around and talk about their joint pains , but they'll go cook , they'll do bowling , they'll do you know , something fun .

So they realize that we're all normal and the parents go talk , and so I'll mingle amongst both groups and kind of get the low down on . You know what they're talking about , yeah .

So anything frozen that you can pull out of the freezer and you cook for dinner , you know , other than a frozen vegetable or fruit , probably a little modified , the sugar component ? For sure , like we're , they're hyper palatable foods for a reason for us to kind of crave it and keep going back to it and creating habit loops right .

So those are the two big ones . Sometimes people will ask me about gluten tomatoes , nightshades and whatnot . If you , gluten is its own little world . So , though , if you have filiac disease , yeah , you should absolutely be staying away from gluten . Now I have a big chunk of patients , I would say , who , whenever they eat gluten , they don't feel great .

Whether it's manifested as headaches , belly pains , joint pains , I'll say , okay , let's limit it , let's because I or find gluten free options .

And then what I closely monitor is the weight and height for kids , to make sure that , even though they're restricting that , but they're still growing , Because I don't , I want them , I want there to be a balance between them growing and not feeling horrible with what they're eating , so that that I kind of talk about .

And then the other part is with the nightshades . The data really comes to us from osteoarthritis patients . So whenever you see a title that says this is treats your arthritis , you know , be very careful . There are different types of arthritis .

You need to make sure they're referring to inflammatory , immune mediated rheumatoid arthritis , Because osteoarthritis is a very different beast . That , yes , we might all be destined for osteoarthritis at some point , but that that is a different mechanism , right ?

So wear and tear , and there was some data saying that people with that eat tomatoes , or the lycopene component of tomatoes causes them to have pain . And so if your outcome is pain , I don't want it to be causative , like tomatoes equals pain you have . There's a big path in between , and so it's always trial and error , trial and error .

I won't say don't eat this . And then some people also ask me about lectins . It's like the new thing with with certain types of vegetables that they have this outer layer that can irritate the gut lining . It's a little . Does that food cause you to have joint pains or belly pains or worse than anything ? Right ?

If the answer is no , then we continue , and if it is , then we try to modify it . I was like , okay , let's pressure cook your beans , or you know things like that , and see how it works . It's very much trial and error . There's not a black and white yes or no . This is going to lead to this .

Just , I think what we're trying to do is use all , engage all our senses , so sight , sound , smell , especially right before bed , to cue in the brain to let them know like , all right , this is the time to go to bed . We're going to let go of all our thoughts and just let our brain rest , because rest is very critical for us .

And so I like , I like the peppermint eucalyptus on my pillow , I just spray it . Some people like diffusers that's fine too , or candles , or incense , whatever floats your boat .

It helps taking a deep breath , doing the injection and then exhaling , and so whenever I do get a little bit nauseous I'll do deep breathing with a little bit of the orange essential oil in front of me .

So I don't know if taking collagen and then breaking it down in the stomach is going to add anything to it . Because collagen is helpful for , like , if you have osteoarthritis a lot of times because it's the building block of thing between the bones . The collagen it's like the little pillows between the bones , and so in that case I would say collagen may

be helpful . But if you're taking it orally for rheumatoid arthritis , I don't know that it's going to offer much symptom relief . Hey , if you take it and it works for you , great Congratulations to you . But there's no reason in my head that I would prescribe it to everybody .

And fish oil also helps because I have dry eyes with the arthritis and recently I went to the ophthalmologist just last week and he's supposed to be like a top dry eye person .

I waited like seven months to get into that appointment and the top two things he said were fish oil , GLA , which is gamma-linoleic acid Start with that and see how I do and then supportive eye drops as well .

I was like I can't believe these words are coming out of his mouth , but I'll take it , you know , to do these type of oils and I had already started fish oil prior to seeing him and I will say I noticed a little bit of an improvement in the dry eyes from taking those .

I would say around three and a half to four grams because there's newer data linking it to , like , cardiac arrhythmias . So you don't you don't want to be in that boat . We just need the right amount .

What is the difference between joint pain versus joint stiffness ?

They feel stuck and you're going to feel that worse in the morning . Or if you're sitting in a long car ride . And the reason that happens specifically in arthritis that's more indicative to me of something inflammatory like rheumatoid arthritis or psoriatic arthritis it's because overnight , when your joints move , they kind of crystallize .

They sit there , I think of it like Jell-O , so you feel stuck and you can't move very well in the morning , but then as the day goes along , you move a little bit , you wiggle and jiggle , you feel better . First is somebody who's in pain . I need to know is it a sharp pain ? Is it a dull pain ? Is it only in the morning ? What makes it better ?

What makes it worse ? If you're telling me your pain is worse at the end of the day , it kind of makes me think opposite of arthritis . It makes me think is this more mechanical ? Is there something going on in your how you're aligned . Do you have hypermobility ?

Because that's one of the more common things I see , and so we'll try to differentiate between arthralgia versus arthritis , which is the joint stiffness .

Right , it's the stiffness that clues me into something inflammatory going on If you're pain . So then we do a pain diary and we really try to figure it out . We might do be doing the blood work up in the background or imaging in the background , but in the meantime I'm going to be asking you to keep a diary of your pain .

Triggers , alleviators , aggravators how often are you taking Tylenol or an aproxen or Ibuprofen , things like that ? But yes , most definitely you can see both , I will say , for certain types of arthritis , like erosive arthritis can be very painful . Soriatic arthritis can be very , very painful as well .

So for me the pain is going to be there , Sometimes even no matter how much I've put the arthritis into remission . It's just the pain can be a lingering thing . So then we try to look for supportive ways to help with the pain .

I need to bring it back because your body has lived in this position where it thinks it's okay to go past the range of motion and we need to bring it back .

So physical therapists or occupational therapists have creative ways to do that , whether it's through splinting , bracing , taping , strengthening the core as well , so you're really engaging the core and not overworking or over-extending your joints . It's a trial and error process again , trying to learn what works for you and what doesn't .

It's about learning what moves work for you and what doesn't , and what's critical . Critical is core , always core .

Some people are blessed to be able to just control their arthritis with diet or certain supplements right , but not everybody is like that . We're all on a spectrum . So the complementary stuff if it didn't work to treat your arthritis or control your arthritis or manage your symptoms , then that's going to have to be accessory to the medications .

So , yes , the crux of your therapy is unfortunately going to be these medications that we all have to take , right to manage it . Then the complementary stuff is going to be to control the stuff that the medicine is not going to help with .

So that's going to be things like aches and pains that you get after yoga or swimming to help loosen up your joints a little bit , or what else is there Yoga , acupuncture , mindfulness techniques especially working through pain flares and whatnot .

Or if you're about to go into a stressful period of your life , you better know that you probably need to journal every morning or every night , just kind of knowing when to kick those into high gear and when you can just kind of coast on medications or maybe no medications , Okay , I think you have answered everything so wonderfully .

But at the same time , I'm also not the best patient , because I think my expectations for myself are different . Just knowing what the doctor is looking for , right . So , if ever , if I hear the word partial remission , I think automatically oh , I'm such a failure . I've tried everything and it's still not working right .

I think it's important to give yourself grace , because it's not that you're not doing what you're supposed to be doing . It's not right for you , the combination is not the right one for you . So we're going to keep working until we move in that direction . And what are we going to do in the meantime to help you kind of cope ?

It's all about the coping in between . So it's tough , it's one , it's not a sprint , it's definitely a marathon what we're dealing with here .

I think also in the beginning I had some wishful thinking that this was a one and done deal .

Keep our fingers crossed , oh yeah .

Right , I will tell you the medication I'm on , but I can't guarantee it's going to work for you . Right , we're all different . And some people have come back and they're like , oh wow , the lotions you use and all these different things are wonderful . Yeah , some come back and they're like I tried it , it worked for a while . It's back again with a vengeance .

We're not going backwards . It's a book that we don't read backwards , we keep going forwards .

If it's the mental part I think of just dealing with the chronic illness I think it's important to realize that there's tons of help out there .

First of all , at any price point in network , out of network , whatever it may be , I recommend that you go see if talking to somebody would help , because sometimes releasing that through words or writing or art or whatever it may be , is what you need right , and grappling with the fact that there are things you can control about this and there are things you

cannot control about this . And so once you settle in with that feeling and really understand that , I think for a lot of my patients that's worked wonderfully .