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What's it like to be a Doctor with RA and Vasculitis? Elena's Story - picture of one woman with brown hair and one woman with a black head scarf smiling
General Education, Patient Stories, Podcast, Provider Interviews

What’s it like to be a Doctor with RA and Vasculitis? Elena’s Story

3 weeks ago
70 min read
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Summary:

On episode 139* of the Arthritis Life Podcast, Dr. Elena shares her personal journey of balancing a demanding medical career with managing rheumatoid arthritis (RA) and vasculitis. She shares how she navigated her serious symptoms of RA and vasculitis while finishing her training to be a cardiologist, and describes the surreal experience of going from her cardiology clinic as a doctor to the ICU as a patient within 24 hours.

Elena also shares her favorite resources for living well with arthritis, including supportive footwear brands, arthritis gadgets, and inspirational books. Shes hares practical tips like finding the right shoes to support your joints, using dictation tools to reduce hand strain, and the importance of accepting that some pain may persist while still being able to live a fulfilling life. 

Throughout the conversation, Dr Elena and Cheryl emphasize the value of prioritizing what’s important and showing up for family, work, and health—even when symptoms make things challenging. If you’re newly diagnosed with RA, this episode offers comforting, actionable advice and a reminder that you’re not alone in navigating this journey.

DISCLAIMER FOR THIS EPISODE:

The views expressed are those of the author and do not reflect the official policy or position of the US Air Force, Department of Defense or the US Government*

Episode at a glance:

Personal Challenges and Advice: Elena shares her experience with managing rheumatoid arthritis and vasculitis and discusses practical tips for newly diagnosed individuals.

Useful Products and Tools: Cheryl and Elena discuss favorite footwear brands and how they impact daily comfort and highlight dictation software as a game-changer for writing tasks.

Living Well with Rheumatoid Arthritis: Elena emphasizes focusing on doing what’s most important, even with some discomfort, to achieve a fulfilling life.

Inspirational Mantras: Elena shares her favorite motivational sayings and discusses how this perspective helps her manage daily challenges.

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, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Elena Segre

I am a 30 something Air Force physician in my last year of cardiology fellowship. I was diagnosed with rheumatoid arthritis during my fourth year of medical school, and then a vasculitis (most likely polyarteritis nodosa) last year during fellowship. I’ve recently completed induction therapy involving both chemo and immunotherapy, and navigated fertility preservation just prior to chemotherapy. I’ve started sharing my story on my Instagram to connect with my friends and colleagues amd offer a dual physician/patient perspective on chronic illness. 

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.

Full Episode Transcript:

Cheryl:  00:00

All right, I am so excited today to have Elena Segre, who is a wonderful person I have gotten to know, and she wears many, many different hats as a healthcare provider and a patient. So, if you want to just go ahead and give us a quick introduction; where you live and what is your relationship to arthritis?

Elena:  00:21

Sure. My name is Elena Segre, I am a cardiology fellow physician. I live in San Antonio, Texas. I am related to inflammatory arthritis because I have it. I have a diagnosis of rheumatoid arthritis, plus some others, and that happened about five years ago in 2018 was my diagnosis. So, I have it and I occasionally treat it, although not very much as a cardiologist. It does sort of live in this, in the periphery of what I do, but as an internist, certainly I saw it and evaluated and experience it. 

Cheryl:  00:59

Yeah, yeah. And I know you and I have talked about this off the record, about how different it is to be a, to have the patient lived experience versus the healthcare provider, you know, doctor experience. Can you share a little bit about your diagnosis story, your diagnosis, quote unquote, I often call it a ‘saga’.

Elena:  01:21

Certainly, ‘saga’ is the appropriate term. Sure. So, and if you see me looking down, it’s just because I wrote it down. I wrote some notes here. Everything started pretty early. Well, not too early. It started in 2015 for me when I was 24. I was in graduate school. I’m also a clinical exercise physiologist. 

So, I do cardiac and pulmonary rehab before I went to medical school, but sort of right in the middle of graduate school, I woke up one morning and really couldn’t move my left arm at all. Nobody really figured it out. The diagnosis I was given after some EMGs with like the painful nerve, like, the needles that go in was an undifferentiated mononeuritis. They said idiopathic. It’s just like something that happens sometimes without a great explanation. And I had a few more episodes of that in in graduate school, and it took a couple of months to return to normal function, but I was always able to go back to my, mostly my previous level of functioning. And a few episodes early in medical school. 

In 2018, I was a third-year medical student, and I am also, actually, I’m in the, I’m active duty military. So, I went to the Uniformed Services University of the Health Science, which is a mouthful, it’s abbreviation is USUHS. Essentially, it’s like your academy or your Air Force Academy or West Point for medical school. So, instead of being a scholarship student, like with your HPSP or your ROTC equivalent, I was active duty in school and went to this academy of the medical sciences. 

They forgot, though, to send me to officer training before I went to medical school, like I was supposed to. They just left my name off the list that Congress approved. So, I went halfway through as a third year. And while I was there, I started having some finger pain. We had to, like, stand at attention, where we’d, like, make a fist. And it was just like, it was very painful. And I thought I had a stress fracture in my foot just from marching, you know, as one does at officer training. 

So, I came home, thought I was rehabbing a stress fracture, just took it easy, wore a boot for a little bit, and a couple of months in it just wasn’t getting any better. My fingers were getting really swollen, like they looked like true and true sausage fingers. If you hear that thrown around, like psoriatic arthritis, like, they looked like sausages. And I was seen by my primary care who pretty expeditiously sent me to rheumatology. 

And then, from there, I had one visit where he tried to tell me that, he’s like, he gave me the fibromyalgia speech. And fibromyalgia is a very real condition that we just don’t understand a lot, that a lot of times we say, you know, there’s a misconnect between the brain and the signals. And he was giving that speech. And I’m like, sir, I respect that, but I don’t think the sausage fingers are being caused by that. So, after an ultrasound and some lab test, it was very clearly like a diagnosis of RA. So, the first diagnosis was actually, like, pretty easy, all things considered. It took me about four months from symptom onset to diagnosis to get something. 

Cheryl:  04:26

And then, in retrospect, do you think that those, that not being able to move your left arm in 2015 was like early signs that maybe just flared up and went away, or who knows? 

Elena:  04:36

So, we don’t know yet. So, that sort of gets into the next, you know, yeah, the vasculitis journey. But so, I was on and off different treatments. So, I’ve been on every single class of drugs that you can be on for RA. I’ve been on at least one of them and either failed them or been unable to tolerate them. So, I think I started off with your like standard triple therapy, so Plaquenil, sulfasalazine and methotrexate. I had horrible side effects from methotrexate. I am so disappointed, because it worked so well. And I did the pills and I did the injections, and I would just wake up in the middle of night vomiting, like, every week. Like, five hours after I injected, I would just, like, wake up from sleep and vomit three times.

Cheryl:  05:22

Oh, I’m so sorry. 

Elena:  05:24

So, we got rid of that one. I did Humira. I’ve done Enbrel. I did Orencia after that. And nothing was really, like, it was close, but it was not good enough for what they wanted to see. So, we just kept cycling and cycling. And that took me all the way through my residency in Internal Medicine, being on and off those different combinations of medications and into fellowship. And I got COVID January before I graduated in my residency. 

So, January 2022, and it really started becoming more out of control then. So, I had horrible, like, jaw involvement. I have some ear involvement. Like the, like, the small joints in the ear had synovitis. So, I got that fun little thing. And then, just like really bad, like, inflamed, hot, just like every sort of disease activity measure you could look at was off the charts. I got switched to Actemra, which worked pretty well, but just not quite well enough. And it’s the same story, not quite well enough, not quite well enough. We tried Xeljanz, which was horrible for me. Like, I wish it had worked, because it was the pill and it’s, you know, you don’t jab, that’s nice. 

But things were not looking really well. So, we eventually decided to try rituximab, which was an adventure. So, it is a very long infusion. There are a lot of the other medications can be done on, like, you know, monthly infusion, but they’re usually one or two hours. This is like an eight-hour infusion. And I actually did really well on it, but I can’t tolerate it very well. 

So, I had a pretty big infusion reaction. I had really high blood pressures in like the two hundreds, chest pain, shortness of breath. Like, it was just like I couldn’t get through the infusion. So, I took the two doses of that, and we sort of threw it off, because, like, you can’t really do a drug that gives you that. And I was actually doing really well from the joint pain. I was like, wow, this is the best my joints have ever felt, which was great. 

And then, we were in our honeymoon. On our honeymoon, we went to the Maldives, which was truly spectacular, really a great place. And I thought I’d gotten sunburned, and it was just like, March of 2023, and I had this, like, splotchy sunburn all over my legs. And I’m like, well, gosh, I must have missed a lot. That’s a pretty weird looking sunburn. And then, on the plane back, my legs just, like, swelled a lot, which, you know, we were lucky enough to buy our flight on point. So, we were actually flying business class, which was really nice. So, my feet were elevated. I’m like, I didn’t think they would swell this much, but they were really fat. And then, I started getting this, like, what we call a purpuric rash. So, just like little busted blood vessels would sort of break out and, like, you press on them and they don’t turn white, so non-blanching purpura. 

And I emailed my rheumatologist, like, “This is kind of weird, like, what do you think of this?” And he’s like, well, it’s kind of allergic. We’ll try some Benadryl or something, and it just wouldn’t go away. And I got it biopsied. And on the biopsy, the dermatologist called back and says, you have a disease called PAN, which is polyarteritis nodosa. I went, what? So, it’s a vasculitis. It’s a necrotizing small and medium vessel vasculitis, which means that it’s like inflammation in the walls of the blood vessels themselves. So, that’s what they told me I had. I called my rheumatologist, who was following along. He said, “No, you actually don’t have that. We probably have something similar. But when you have it in the setting of rheumatoid arthritis, it’s called rheumatoid vasculitis.” So, that’s where the original diagnosis of rheumatoid vasculitis came from. And it was just at the time some rash. 

And they got a bunch of labs just to look for other things that the vasculitis can cause. So, it can cause kidney problems is a big one. It can cause nerve problems, which is what we may think would happen to the arm. It can cause — anywhere there’s a blood vessel can cause a problem. So, it can cause eye problems. It causes all sorts of problems. What we decided for me was initially it was just skin as the sort of the summer went on. At that point, my blood pressure started going up like a lot. At one point, I was on like five different blood pressure medications and still not in the best control, which is pretty unusual for like a 33-year-old. And at that point we had some more labs done, and there was maybe some involvement in the kidneys too. So, going back-and-forth on different medications for the what we thought then, or we think now, is still that some sort of vasculitis. I was on a medication called Imuran or azathioprine. 

Cheryl:  10:22

Yeah, I took that while pregnant. Yeah.


Elena:  10:25

Yeah, yeah. And, you know, it’s safe in pregnancy, which is awesome. I had some problems tolerating that as well with nausea and vomiting. We made it eventually. Eventually, I just got used to it. But I just kept getting these rashes, and they would break out all over my body, like over my legs, arms, and chest. And we just couldn’t get — I was on steroids for the vasculitis, used much higher doses of steroids. So, usually for like a rheumatoid arthritis flare, you’re sort of looking at like 20 milligrams as your top dose, and you come down for there. For vasculitis, a lot of times they would put me on 80 for a couple of weeks, and then titrate down from that, so much higher doses of steroids. 

Cheryl:  11:05

It’s a lot.

Elena:  11:06

It’s a lot, a lot of steroids, and the blood pressure wasn’t getting better. So, at the end of the year, sort of towards October, everything was just, it was not getting better. Despite steroids, besides the Imuran, besides all this other stuff that I was on. And my rheumatologist decided that was probably time to start thinking about a medication called cyclophosphamide. Cyclophosphamide is a chemotherapeutic drug. It has been used, it was one of the first drugs used for rheumatoid arthritis, and it’s sort of described as like the nuclear bomb to, like, and all other immunosuppressants. 

So, it’s extremely effective for both vasculitis and arthritis, but it comes at a pretty high price, and that it is a true and true, like, we say, like methotrexate, it’s a chemo drug, but it’s not really used at the chemo doses, right? So, it’s a little bit different. This is given at like this, more or less the same doses as a chemotherapy. So, you’re looking at a lot of the same side effects. A lot of — loss of fertility is a big one, and then risk for future cancer. So, risk for bladder cancer and blood cancers. So, it’s not a drug you just, that people typically just use. You’ll use it typically in bad vasculitis or like lupus, where you’re looking at organ involvement, so like lupus nephritis, or like lupus cerebritis, where it’s like in the blood vessels of the brain. So, they do use it, but not that often. 

And in preparation for this, they wanted me — I actually, I wanted to talk about like cryopreservation, or preservation for the fertility, because my husband and I really want to have kids. And that would, it’s much more difficult after you have a cycle for a round of, couple of rounds of cyclophosphamide. We were lucky in that the hospital that I work at has a reproductive endocrinology. Not all of the military hospitals have it, so we were seen pretty quickly by them. Just fantastic. And they were actually able to submit a request to the insurance that they cover it, which is great, because it’s not usually covered. 

But there’s, like, a very special rule that, if you’re using it for, like, actually, the rule says for cancer chemotherapy, TRICARE will pay for it. I didn’t have cancer, so we had to sort of ask really nicely, but it was still the chemotherapeutic. So, TRICARE actually eventually offered to pay for this, which was fantastic. So, the caveat to that is, it’s not TRICARE paying. There’s, like, it’s a very weird reimbursement system. So, I couldn’t get it done at the military facility. It had to be done at a civilian hospital locally so that they could reimburse because this, like, separate pot of money can’t be used to pay the military. 

So, we go over there. It takes a while to get an appointment, right? Everything is one to two months of getting an appointment. And I’m seen by a local hospitals group, and they, they’re like, “Sure, we’re happy to help you out. We need to do all these things first.” And they found a cyst on my ovary, which was totally benign, like, people get ovarian cysts. They’re part of how the ovaries work. Never really bothered me. But they’re like, before we start giving you all these hormones, we want to make sure that it’s not something to worry about or something that’ll grow with the hormones. So, they sent me back because they can’t actually evaluate that at the civilian hospital like at military hospital, and I’m trying to get in touch with like gynecology here and get the ultrasounds done. It was just kind of a disaster, like communicating between two healthcare systems. 

And in the meantime, I start having another big rash. So, at that point, my rheumatologist offers to do a therapy called IV-Ig, which is IV immunoglobulin. And essentially, it’s like — I’m not a rheumatologist, but it’s like the immune part from like a thousand blood donors all pooled into a bottle, you do an IV, and I think it’s supposed to sort of like act as, like, a temporary immune system to tack things down. So, we started a couple of rounds of that while we’re still waiting to get on this Cytoxan. We try and try and try and trying to push through at this civilian hospital, but it’s over the holidays, and things are just not moving. And eventually —

Cheryl:  15:30

Wait, can I just really quickly ask, because I think people listening are going to wonder, were you working full-time?

Elena:  15:35

Yes, I was working full-time.

Cheryl:  15:38

How were you doing that? Like, how are you managing? Like —

Elena:  15:43

Well, it’s, you know, it’s kind of a blessing, because I work at a hospital, so like, all of these appointments, I like, go downstairs, or, like, the lab, I’d go downstairs on my lunch break or something. So, in some ways, it’s a lot easier. The other rule is, the American Council of Graduate Medical Education, the ACGME, actually mandates that programs must give you time away for medical appointments. So, like, I tell them I have something to go to, like, no ifs, ands, or buts, they have to cover me. So, they are very good at working with me, and my program has been extremely supportive. But yes, I’ve not worked full-time for this whole thing, but through there, I was absolutely working full-time on service.

Cheryl:  16:25

I just think it would be so mentally exhausting to be like a functioning cardiologist, and then have to manage all your own health. I mean, I think, as a patient, sometimes we forget that our doctors — this is a little little life lesson in here I’m interjecting — but, you know, our doctors might be battling things we have no idea about as well, whether it’s fertility related, or chronic illness. So, anyway, point, that’s my point, but you have, you’re in the middle of telling your story.

Elena:  16:50

That was actually, I was thinking to myself, it was about that time because it was over Christmas that this is all happening. And I was doing our Christmas coverage. I was in our cardiac care units who are like our sickest patients. And I’ve been, I was working on my blood pressure, changing all that stuff, changing the medications to get on, like, pregnancy friendly medications for during the IVF cycle. And it’s always like changing all my medications all over the place. And I woke up this morning, one morning, it was like Christmas Day, or the day after Christmas, my blood pressure was like, 70/40. Like, I did go to the hospital to, like, work, and I was like, oh, I don’t feel good. And I was like, I was joking. I’m like, man, my blood pressure is lower than all —

Cheryl:  17:32

Than your patients. Yeah. 

Elena:  17:35

So, I sat down during rounds that day. But other than that, we made it out okay.

Cheryl:  17:40

That’s amazing. That’s more power to you. That’s a lot. 

Elena:  17:45

It was, it was a lot. But, you know, it didn’t really seem — it was, I’m pretty used to managing my health, because the RA has been going on for a little bit, and it sort of rolled up. So, it didn’t seem like a lot of the time, like, looking back on it, I’m like, what was I doing?

Cheryl:  17:59

That’s what, I do not —

Elena:  18:01

Go to work. That’s what I do. 

Cheryl:  18:02

There are times, seasons in my life before starting this podcast and everything, because my health has been pretty, you know, stable-ish in the last four or five years. But there were some times in the mid-2010s when I look back and I’m like, I do not, like, you don’t know how difficult it was to function every day until you start feeling better then, you’re like, how did I function through all that? But, you know, one hour at a time, one minute at a time, one breath at a time. Yeah.

Elena:  18:33

So, we finally, mid-January after all this, I’m trying to talk to the outside REI department, and they’re just not responding. I think the provider was on leave or something. And I wake up one morning, I’m not able to move my left foot. Like, just a complete, like, drop foot, doesn’t move up, doesn’t move down. And I’m like, oh, that’s weird. That’s why I emailed my rheumatologist. I’m like, hey, just so you know… He’s like, why don’t you come in downstairs that same day. So, you know, it was easy because I already got to work, so I just go down two flights of floors underneath, and there he is. He walks me. And he’s like, that’s mononeuritis, which is, again, that same, what we think maybe happened to the arm. Nobody knows, because that was so long ago, and I don’t have even have RA then, but they said that’s probably mononeuritis multiplex, which is essentially like the vasculitis, the vessels that feed the nerve are inflamed, so the nerve starts hurting. So, they admitted me. I was actually, like, in scrubs. I, like, ran some stress tests for the department in the morning, went downstairs, and they’re like, “Well, we need to admit you.” I was like, are you guys kidding me? So, I was admitted for six days, I think.

Cheryl:  19:51

Oh, my gosh, is it because is it life threatening? Or what —

Elena:  19:56

Life and limb threatening, yeah. So, they were — so, life, limb, or eyesight, sort of the rule for the emergency room. So, that’s like, considered a, like, a major manifestation of the vasculitis. And I had just gotten a bunch of rash too, so they admitted me, and we did something called pulse dose steroids, which is just like stupid high doses of steroids. So, it’s like, I got a gram of Solu-Medrol for five days, which is about, it was like, it’s like 650 milligrams of prednisone. It’s just like huge doses of prednisone. It does not feel good.

Cheryl:  20:38

What did it feel like? 

Elena:  20:40

So, if you, like, feel like, you can put people into, like, psychotic breaks from these. Like, I didn’t sleep, like, hardly at all. You can put people in the funny heart rhythms with them. I didn’t have any of that. It was just like, I was, like, totally jazzed. Like, think about the worst, like, prednisone shakes you ever had and multiply it by, like, 100. Like, it was miserable.

Cheryl:  21:01

I get really anxious on like 25 milligrams. I literally can only imagine. 

Elena:  21:08

It was horrible. The good news is, is with an admission, you’re really able to coordinate a lot of care. When somebody’s inpatient, it’s a lot easier to get people to come and see you. So, rheumatology was not joking around. They’re like, we need to start the Cytoxan. And it doesn’t really matter that you haven’t done the IVF yet. Fortunately, the department at my hospital was able to come up and see me. And even though the military hospitals, we don’t run the, like, the cycles of IVF that often, there are a couple of cohorts a year, they were about to start their winter cohort. And they were actually able to squeeze me in. We ended up paying out of pocket for it. It’s at cost when it’s at the military. So, we paid, I think, $7,000 for the cycle, which is much, much more discounted than it typically is for a cycle. And they were able to squeeze this right in. 

So, they were, the rheumatologists were willing to wait for that cycle to be completed, not for me to wait and see what was going on at this other hospital. But one to two weeks, they’re like, okay, we think we can give you the steroids, and as long as in like two to three weeks, you can start the cyclophosphamide, we’re happy with that as long as nothing changes. So, I started the hormone, like the hormones for the IVF, like the shots were done in the hospital. I had like five people come up and visit me the first day. They’re like, we’re gonna take care of all this, no problem. And then, I was discharged, and continued the injections, and I went home. I actually went back to work the day after I got out.

Cheryl:  22:41

Oh, my gosh.

Elena:  22:42 

I was like, oh, okay. Well, I know I’m just doing some, like, IVF injections. I can do that at work. So, I went back to work. And for like a week and a half while I finished the stimulation for the IVF and then they did what they wanted to do, my egg retrieval in the OR. So, usually it’s an office-based procedure, but I was having enough problems with blood pressure that they were like, we really think it’d be safer to do it under general anesthesia. So, we did it under general anesthesia in the OR. 

I don’t remember anything, which is super easy. And then, after that, I ended up taking a week and a half off for there. Had some problems. Started the cyclophosphamide, started doing some blood draws. Had some really low platelets for a while, which are like a part of your blood. So, I was called back in the emergency room a couple of times. I almost got admitted, but fortunately, fortunately, I did not have to get admitted again for that. And then, after about two weeks, I was able to go back to work. And that was, and I just got my first cyclophosphamide dose, so sort of started therapy for that, and finished the egg preservation, and was like, okay, it’s time to go back to work.

Cheryl:  23:59

This was February of 2020?

Elena:  24:00

February, yeah. The way that cyclophosphamide works is it’s done in cycles. So, the first three doses were two weeks apart, so I’d go in every two weeks, and I would take three days off after the injection or the dose day, because I would feel really bad, a lot of nausea, but it’s a chemo drug. So, you feel your nausea, you’re vomiting, you just feel like garbage for like a couple of days, and then you like, start to feel a little better. And I would go back to work in between. After two, after three dose cycles of that, I got spaced up to every three weeks, which was much better, because I was able to recover a little bit more in between. And I did that for a total of six cycles, I think, six cycles, yeah. Six cycles of cyclophosphamide. And that took me to the beginning of March. 

I had another episode of weak foot that I was readmitted for and given more steroids. And then, one more episode of rash sort of towards April timeframe that we didn’t even wait. They were like, every time you get a rash now, you get like, a weak foot or a weak arm or something. So, they brought me in, and the plan to get off the cyclophosphamide, which you can’t do forever, was to try the rituximab again. And the rituximab is the medication that worked really well for me, but I had a lot of side effects with the infusion. So, like, okay, no problem. We’re just going to see how it goes again. Maybe it was the kidney issues from the vasculitis, that’s why you are having the reaction to the rituximab. Now that the vasculitis at least is maybe a little bit better controlled and you’re on some blood pressure medicines, let’s try it again. 

Because of the reaction I had, they did not want to do it as an outpatient. They wanted to do it as an inpatient. And I actually, turns out, just because of the way the hospital works, they needed to do it in the ICU. So, I was admitted to the ICU for this, which was actually, I thought it was a little bit overkill, but was actually probably the right place to do it, because I had the reaction again. I had, we got through the whole dose, or half of the dose, which was good. It’s given two days, two weeks apart. So, I got through the full first day, essentially, just doing it really, really slow. Allergy helped us out. So, I had, like, allergy, I had critical care and rheumatology, all co-driving the ship. But I had, again, sort of just like, we were able to push a little bit harder because we’re in a place that could deal with it better than an outpatient infusion clinic. 

But just like chest pain. I’m a cardiology fellow, so I’m pretty well acquainted with chest pain. But yeah, it felt like exactly like I tell people, it feels like in the textbook. So, it was true and true angina, which is what chest pain is from you have heart pain. And it was like crushing, we call substernal, felt like something was sitting on my chest, just like you read about in the books. Like, all sweaty and nauseous and then like a huge headache. And what we think happened was there’s a type of heart disease called vasospastic angina, which is where the blood vessels sort of close up, they just spasm shut, sort of like in Raynaud’s, which I also have Raynaud’s, where your blood vessels spasm shut in your fingers. They can spasm shut in your heart and also in your brain. So, we think that’s probably what happened. Had some EKG changes that would support that. And I don’t have any, like, I got, like, all of the cardiac workup afterwards, and otherwise my heart’s super healthy. So, we think it was causing some spasm in the arteries, probably because the arteries were already unhealthy to begin with. 

Cheryl:  27:33

Because of vasculitis.

Elena:  27:35

Vasculitis, exactly. And so, that’s sort of off the table for now. It lasts like six months. So, we’re waiting for at the end of September to see what happens when the rituximab finally leaves my body, but things have sort of quieted down, because things were just not going the way we wanted them to. Rheumatology actually referred me to one of the vasculitis Center of Excellence, which is going to be, like, one of those brand name hospitals, you know, you think about, like, Hopkins or Mayo. So, I went to a hospital like that to get their vasculitis experts opinion. And I get there, and she’s like, I don’t think you have vasculitis. I’m like, what? Like, come again. What? She’s like, it’s just not quite right. My presentation is not quite right. The biopsy doesn’t look quite right. I don’t know what it is, but I don’t know that you have that. 

So, I get my pathology samples, which have been frozen from my skin biopsy and stored at the military hospital shipped to this other like brand name hospital and the pathologist reviews it and gives a little summary. He’s like, well, it’s either this or old vasculitis, and they just didn’t catch the vasculitis in time because, like, probably because it healed, or had been a couple of weeks since the rash had started when I got it biopsied. So, we still don’t know what it is. She the vasculitis expert was very nice. She said, you know, it’s either vasculitis or it’s something new, and it’s like the sort of disease that only a few people even know what it is. But you know what? I also showed — so, this brand name hospital review that gave me a new pathology reading, and I show it to my rheumatologist, and I’m like, yeah, what do you think of this? She’s like, “Looks like you have vasculitis.” 

And then, the vasculitis expert looks at the same report, not even like the slides, but the same report, and says, “Oh, this is not vasculitis.” So, like, we have no idea what it is. I think probably it’s vasculitis because it responded to the vasculitis stuff. But, you know, you have an expert saying, “I don’t think this is it. Could be it, but it could not be it.” So, I have no idea what it was at the end of the day. But right now, I haven’t had anything in a little bit, so we’re just going with it’s done for now, and we’ll deal with it again. They’ll do some more biopsies is the plan if something comes back, and try to get luckier with the pathology this time. 

Cheryl:  29:59

Well, and oh, my gosh, there’s so many learning points in here, but one thing we had talked about before recording is ambiguity and uncertainty. Seems like you have received from the Universe and your health like a masterclass in experientially experiencing. 

Elena:  30:19

Correct. And it’s not something that I as a cardiologist deal with that. I mean, like cardiology is one of my favorites, because it’s not black and white, but as far as medicine goes, it’s like, pretty black and white, like someone’s having a heart attack. You take them, you can see it on the screen, you fix it, and you know it’s done. And it’s pretty definitive. And a lot of things are kind of like that. And we have unknown. And when you get deeper into anything, there are always shades of gray. But as far as medicine goes, cardiology is like a pretty well defined. We have a lot of money to study it. We’ve been doing it for a long time. And when I saw this other vasculitis expert, she’s like, “This is just how rheumatology is. It just lives in shades of grey.” And she was like, I’m not at all surprised that it’s like this. And my rheumatologist said the same thing. She’s like, “This is just how our practice is.” I’m like, good for you, I couldn’t do that. But yeah, shades of gray is exactly it, which is frustrating, because we went through all this treatment to hear maybe it’s not even that, at a significant personal cost of maybe sacrificing fertility and, all that. So, you know, I don’t, I don’t know. I kind of hope it just is vasculitis because I’d have done the right thing. But, you know, looking back on it, I think everybody acted in great, like, good faith and on the best information they had at the time. And that’s all that you can ask. 

Cheryl:  31:40

Well, I think sometimes, when you have dual diagnosis, they can mask each other, overlap in ways that make them not look like each other, right? Like the classic case that I see with as an occupational therapist in rheumatoid arthritis is like someone with hypermobility who also has rheumatoid arthritis, and then you got the stiffness from the rheumatoid arthritis and the hypermobility, they mask each other. So, you’re not stiff enough to really look like you have RA but you’re not hypermobile enough to look like you really have, you know, you actually have both. I don’t know if that’s the same, I definitely am not a vasculitis expert. 

Elena:  32:13

Me either. They’re always like, “What do you think?” And I was like, I literally don’t know. Just tell me what you think it is.

Cheryl:  32:18

It’s not my heart, so I don’t know. I did have —

Elena:  32:21

It’s not in my box of, you know, I don’t know. They did say that it was probably more likely polyarteritis nodosa more than rheumatoid vasculitis. Rheumatoid vasculitis tends to happen in old people who’ve had really severe arthritis for many, many, many, many years. So, it’s a complication that’s gone down a lot since the introduction of the biologic medications, and, like, I have arthritis and it’s bad, but I don’t have any, like, true and true, like joint deformities, like my hands don’t look on first inspection like I would have arthritis or something like that. 

Cheryl:  32:52

Right, right. Yeah, no one’s ever, and I was diagnosed with severe rheumatoid arthritis in 2003 but because I’ve responded so well to a lot of meds, a doctor just last summer was like, or last spring, was like, “You don’t have what we call across the room rheumatoid arthritis. I can’t tell from across the room that you have it.” But I do want, if anyone’s listening wants to hear other stories about people with vasculitis there are two episodes of the podcast previous to this one, like number 87 with Hay, and then 118 with Rosemary. She had a medication side effect that induced vasculitis.

Elena:  33:32

The TNF inhibitors, like your Humira and your Enbrel can also cause them. 

Cheryl:  33:36

That was what it was in her case. Yeah. So, just in case, but it is not one that I, like in my experience, you know, see a lot. It’s definitely more rare than your straight up rheumatoid arthritis. 

Elena:  33:50

It’s not something that I’ve seen a lot of either. And unfortunately, as a cardiologist, the vasculitis we see is like the really bad one, but you get, like, the really bad stuff that happened from. So, I’ve had, like, in memory, recent memory, one patient with vasculitis, and I don’t know that he’s still, I think he’s still alive, but he ended up going for like, a heart transplant. That’s where we were. So, yeah, very severe. You know, just like anything else is on a spectrum, and when you get cardiology involved in a vasculitis, it tends to be on the more severe side of the spectrum.

Cheryl:  34:21

Understandably. And how, what are some ways that you’ve coped with that uncertainty?

Elena:  34:29

Poorly. I mean, not at all, really, but it just sometimes it feels fake, because I am, you know, as a physician, I’m sort of taught to deal in probabilities. So, the probability that somebody has a disease like this is already low with the vasculitis. In terms of the disease, that it may be not vasculitis, but something that only a few people know, that it’s, like, doesn’t exist, right? That probability doesn’t exist. So, like, what is really the likelihood that I have that? So, it just feels a little fake. I’m like, why? Why are we going through all of this? And my husband’s really good at reminding me. He’s like, no, like, remember, you saw this person and this person, this person, it’s definitely not fake. And like, you have all the, like, objective evidence, and you can’t make up a rash. Like, I saw it, so you’re not making this up, but. 

Cheryl:  35:21

Yeah, no, that’s really, that’s really interesting. I think that, I think it’s such a — I call it often like a whiplash, like a diagnostic whiplash of like, all you want — a lot of people who’ve shared their stories on this podcast, and myself before I was diagnosed. All I wanted was a clear-cut diagnosis. And then you get it, and there’s a tiny bit of a whiplash of like, oh, wait. Now I have this thing I can wrap my head around. So, that’s positive, but the negative is that I am now have knowledge of specifically what’s bad about me. But then, you’re like, okay, but now I’m adjusting to that. And like, in my Rheum to THRIVE support groups, I’ve seen so many people go, the majority of people continue with the same diagnosis they get, but there has been, it is not uncommon for people to then have a change in diagnosis, like we thought it was ankylosing spondylitis, but now we’re thinking it’s psoriatic arthritis or rheumatoid arthritis. And they’re like, well, wait a minute, I didn’t like that I had it, but —

Elena:  36:16

Yeah. It was something, at least I had an answer. It’s totally discombobulating, if anybody else has to deal with it, I’m all ears.

Cheryl:  36:26

Oh no. I mean, I think, I wonder, just listening to how much you’ve functioned during all this, is that maybe your work potentially, being able to focus on something else could be a way of coping? 

Elena:  36:39

Yeah, absolutely. And I’ve had the like, an incredible, like, blessing that I’ve really been privileged in terms of the way that the healthcare system has interacted with me. I don’t tend to get gaslit as much, I think, as people, because, you know, it’s harder to do that to a colleague. So, I think, you know, I do get a VIP treatment when I’m seeing, like, I just am, because I’m a doctor, and that, you know, is lucky for me. It is unlucky for a lot of other people that they are not getting the same sort of treatment. But I get a lot of people who spend a lot of time with me. At the beginning of all this, when I wasn’t sure what was going on, my blood pressure just kept going up, and my primary care doctor was not really appropriately educated onto that, that this is not normal. I was because I deal with blood pressure. Oh, that’s actually right in my wheelhouse. 

So, I’m like, this is pretty weird, and I had a very good mentor that actually wrote one of my letters of recommendation for medical school who’s a nephrologist, and my parents happened by him. He’s a good family friend, and we’re telling what was going on. He was like, I think this is vasculitis. And he had had connections in a another very large brand name institution with their rheumatology department, and sent my case over to them, and they actually gave me an informal second opinion, sort of in the middle of, like, when I was still getting the ‘We think this is vasculitis’. So, I’ve had a lot of a lot of support that I don’t think most people have, in terms of this is a diagnosis, this is what we’re gonna do. Yes, you’re getting appropriate treatment. Yes, you’re getting all the testing that you need. 

Cheryl:  38:16

Yeah. I mean, I think there is this funny saying that I’ve heard like that I don’t really agree with, that doctors make the worst patients. I’ve seen, but I’ve seen that more in like, I’ve seen that in like, ortho, like, when I — I hope it’s okay to say my uncle’s a doctor, and he’s had, like, he did do the classic thing where, like, he had to get surgery for something, and then like, like wasn’t supposed to put weight on it, and then just did, you know, like, that kind of thing, I can see. But in the, in the case of something like, you’re dealing with the gray areas, it feels like maybe that’s an asset to have that. 

Elena:  38:48

It is a little bit, I always worry that I’m pushing a little bit too hard for something, because I think it is that way. And I understand that I’m not the most objective or the best expert on my own health in terms of, like, exactly what’s going on. You know, in terms of the diagnosis, I think I was lucky in terms of it was a blood pressure issue, because I really am very qualified to deal with it, so I knew something was wrong, and I felt very empowered to say, look, you’re wrong. And I have a delightful primary care manager. She is not an MD or a DO. So, there’s a little bit of a power mismatch there. And, you know, she’s fantastic. But when I, when I went in and said, look like this is not getting better, and this is not an appropriate management, you can’t just keep putting medications on you got to find out why. And I said, I want to referral nephrology. And it was, I mean, that was it. Like, she was like, okay, no problem. And I think probably there’s more pushback on most patients on getting specialist referrals.

Cheryl:  39:45

Yeah, okay. And I wanted to tie up the end just to make sure that that I do, that I don’t forget. Sorry. I’m just like, this is how my brain works. I had to write it down on my little sheet here that I take notes on. So, in terms of the IVF, and so you have gone — before you did the chemo, you were able to, and I know that’s a long process. So, is it basically that the egg is, like, available whenever you end up wanting to use it in the future?

Elena:  40:15

Yeah, so we ended up doing embryo preservation, because they asked me what do I want to do. I’m like, I don’t know. And I’m with my husband, who I think is the only person I’m going to have kids with, as far as I know. And I think they’re essentially more shelf stable if it’s an embryo. So, I did, it was like two weeks of hormone injections every day, a couple of injections, and then you would go in either every other day or every day for labs in the morning, and then ultrasounds, like, a couple of times. And so, they would do that for like a week and a half, and they measure and they measure, and you’re measuring your hormones, and they decide they’re looking at how many eggs, egg follicles they see on the ultrasound. So, like, they’re like, okay, it’s like, today we see, like, 10 eggs, and then the next time would be like 15. 

And they just keep pushing and pushing and pushing until they’ve decided this magic number in terms of, like, the hormone levels and the eggs and how likely are you to have a complication from going too hard. And they’re like, okay, and then you give yourself one last shot called the trigger shot. I think it was like two days before we went to the OR that causes them to all mature at the same time. And then, they just, they go in and pluck them out. So, and then after that, I was like, okay, I’m like, okay, it’s done, like, got them out, great. It is not done. I think it’s done there if you just freeze eggs. But since we’d opted to do the embryos, they implanted the semen, the sperm and the egg together, and you had to, like, wait for them. So, they actually mature as like an embryo on petri dish, essentially. And you — this was, I think this was the worst part, like, I had no idea this was going to happen. Usually, there’s, like, a lot of counseling that goes into couples. So, like, what’s going to happen? We just didn’t get any of it. I mean, which is nice, because we got it there fast. We got fast care, but we just didn’t know what to expect. 

So, like, every couple of days, we get a call from our REI and the embryologist and be like, “Okay, these are where you’re at. You got, think we got, like, 18 eggs harvested, but only, I think, only 5 of them implanted.” So, all of a sudden we’re down to, like, five, and then they would call us and see how they’re maturing. And at like two weeks, they’re like, okay, we got the final number and we had three, which was a little disappointing from where we were standing, but it is what we got. I think there’s a lot of research into how to get the best results from IVF, and they’re like, you know, minimize your stress and, like, exercise and make sure you’re healthy. And I was not at all healthy. So, probably it was because I was very sick that we didn’t get a lot of embryos. But that was very stressful to hear, like, how many are going in the freezer and all of that, and then they’ll stay there, as in the freezer, until we’re ready to try to conceive. 

Cheryl:  43:04

Okay, okay. And you know, there’s a book that covers, that I’ve recently finished that I do just want to recommend. It’s called ‘Between Two Kingdoms: A Memoir of a Life Interrupted’. It’s by Suleika Jaouad, and she was a young person who had cancer and went through a bunch of cancer treatments and wrote a beautiful — she used to have a New York Times column about it, and then definitely covers the, Between Two Kingdoms is actually about living in that gray area between, like, the, quote unquote, ‘kingdom of the well’ and the ‘kingdom of the sick’. And she had to decide, like, at age 20, they actually heard doctors were like, “You need to start chemo right now, but it’s gonna kill your fertility.” And she had to, like, convince them to let her wait one more month so she could freeze her — so, similar, covers some of that. So, it’s just, it’s a great read as well. But yeah, that’s just, that’s a lot to have to cope with. I mean, your wedding and your honeymoon were, like, you only had, like —

Elena:  44:10

The preview, yeah.


Cheryl:  44:12 

Yeah, like a year before or, like, not months, just months before that, and then you’re like, all of a sudden having to be like, okay, so we’re going to —

Elena:  44:18

Yeah, yeah. We took a year off between the wedding and the honeymoon, because it was too much to plan both. So, we’ve been married for like, a year and a half, but I knew, like, we were planning on having kids after I finished my training. I just, I knew I couldn’t do kids and fellowship at the same time, so it was a little bit sooner than we were expecting to think about all of that, but I’m glad we had the opportunity to. And the team was so fantastic.

Cheryl:  44:41

Yeah. And then, you could, theoretically, these fertilized eggs could be either implanted into you or into like a gestational carrier, depending on how your health is going. 

Elena:  44:53

Actually, I should be, as long as I’m in remission, I should be able to carry and I should be able to. If we don’t have enough eggs, or those don’t work out, I should be able to carry another egg. It’s not the — it’s not like the pregnancy machinery — it’s the true toxic to the eggs is what the Cytoxan does. So, we’ll see. Hopefully, I stay in remission and I just have a pregnancy, which I think is pretty good for a lot of autoimmune diseases, is it tends to get better in pregnancy. So, we’ll see.

Cheryl:  45:22

The RA, for sure. I think the numbers are between 60% and 70%. I was in that category, like I went into remission during pregnancy. I felt the best I’ve ever felt since my diagnosis when pregnant, which, like, I’m, like, everyone who’s pregnant is complaining. I didn’t want to be one of the people, like, what’s wrong with them? It was just for me, I’m like, my lived experience is that I actually have way more energy than I really do. I felt like, oh, it’s like, 7pm and I’m not dragging to keep myself awake for two more hours, you know. But so, I really would hope that. But I would say for the record that lupus is one that maybe people won’t, wouldn’t be aware of, that tends to have more complicated pregnancies. 

So, but I was told in 2020, and I believe this is still the case, if your RA has been pretty stable, you’re not considered a high-risk pregnancy just for having RA. I mean, in your case, you have two conditions and maybe might need more — but just for anyone listening, it might surprise them, because I’ve seen like in my support groups, or in like social media people saying, “Well, I’m sure I’m just considered automatically high risk.” And actually, you know, not necessarily, and so you just, but you do need to make sure that your medications are safe for pregnancy and all that. But yeah, I mean, you’ve definitely, I know you said, you answered the question I asked, “How have you been coping?” You answered it the way that a couple people have actually in the past, too, which I think is always a funny answer, of, like, not well. Like, I take it as a very honest answer. 

Like, that’s how a lot of us feel about ourselves, where, like, everyone else is coping better than me. Like, what is, you know, but I guess that’s what my negative self, my shoulder, my shoulder negative guy versus my shoulder angel. The Shoulder Devil is like, “You’re not coping well,” but it’s like, compared to what? Like, how are you supposed to cope? There’s a lot being thrown at you. So, yeah, I think that. I mean, it seems like you’re definitely, like, a problem solver, and you’re getting, you know, you’re in control, like, working on, like, my biggest advice always is work on controlling what you — identifying what it is you can control and what you can’t control. And, like, learning to just, again, things will sit in one of those categories, won’t they? You know, sometimes —

Elena:  47:38

Yeah. You can do things like exercise and stress management and that’s going to make all the difference in the world. And, like, sometimes it doesn’t matter at all. Like, you can be stressed or not stressed. Like, your disease is going to be horrible, so.

Cheryl:  47:50

Yeah, yeah.

Elena:  47:50

Don’t worry about it too much. 

Cheryl:  47:52

Yeah, yeah. Or just, like, the conditions of your life are just not allowing for that. You’re like, if I’m going to my best friend’s wedding, like, I’m not going to take a nap in the middle of the ceremony, like, even if I know that a nap is like, the right thing that my body needs right now, you know. But, and one of the things you also — I’m just trying to look at my list here — also, before we started recording, you said that you wanted to, you know, one of the things you’re passionate about is helping your physician colleagues understand the patient experience that isn’t taught in school and that even the most thoughtful physicians might not think about. That was such an insight, like, that’s such a beautiful phrase. Again, words are hard.

Elena:  48:35

I mean, as much as like, you try to like, think about what somebody might be going through, like, at the time, like in between appointments, or like with the treatment, or like how they might be feeling. Unless you really live that experience exactly, and nobody can live anybody else’s experience exactly, then it’s, I think, really important to listen and just do the best you can. I always ask the patient and say, “Look, I’m human, like, I want to be there for you. Please let me know, like, what I can do to help you out,” like and maybe this is me projecting what I want, to me, onto them, but I say, “You never bother, please don’t ever hesitate to reach out to let me know if you have any questions or anything like that,” because often your question that might be really bothering a patient would take me, like, five minutes to address over the phone, and it’s no problem at all. But, you know, there are certain things like you don’t even think about. 

So, I use blood thinners all the time. I’m a cardiologist, like the backbone of cardiovascular medicine. I got Lovenox shots, which are like the blood thinner shots for the first time, and they sting. Like, I’ve done a lot of shots of like Humira and all this stuff, and those guys stung so bad. I had no idea. And nurses always like, “Oh yeah, Lovenox hurts like a, you know, like crap,” and I was like, oh, didn’t know. Like, I prescribe this seven times a day, and I had no idea that it really stung. So, there are little things like that, like, know that your patient’s getting waking up at 3:30 in the morning for labs every day while they’re in the hospital. Or like that discharge, there’s a lot of moving parts to discharge from a house, from a hospital, but like, the patient doesn’t really realize that. 

And I think, like, the first time I was admitted, we got discharged at like, 8:30pm and it was just like, I was just like pacing. I just gotten all these steroids, and I was just like pacing back and forth, like I was about to strangle someone. And I know exactly what they were doing, like they were trying to move it through, and probably trying a little bit harder, because I’m, like, a friend of theirs, but like, it’s still going to get done. So, I think it is really hard for doctors to know, and a lot of your doctors are generally younger, healthier people. That’s how they’re able to get through medical school and residency, and they will not have that experience. So, even if they’re trying to think about it, it’s just something you don’t, like, I don’t think about when I’m on the wards or doing it, because I’m thinking about other things.

Cheryl:  50:56

Yeah, I mean, it’s such a tricky thing because you only have so much time with the patients, too, so you, you can’t possibly think of every possible aspect of it, but I think you’re right to just, you know, just listening and asking about their actual lived experience and what are, yeah.

Elena:  51:18

And patients can help out on the other end by sort of Like, making sure you know what you want to talk about when you come in for an appointment, or if you’re in the hospital, like making lists for when the specialist stops by that day, but like, having a list so you don’t forget, because it’s so easy to forget when you go and you’re like, all these things I want to say. Symptom tracking is great, so that we know, like, I’m giving you this medication, it has a side effect. When did you actually have it? Like, when did it start? How bad is it? Like, what is it impacting? Otherwise, I won’t know. Like, if I’m your doctor and like if nobody’s keeping track of it, I’m like, all right, sounds good. Everything’s working good. Congratulations.

Cheryl:  51:52

Yeah. And a lot of people tell me in the rheumatology or chronic illness world that they’re nervous about bringing their symptom tracking journal or system to their doctor because they’re worried the doctor is going to, quote, unquote, like, ‘gaslight’ them or say that, like, “Well, you’re just,” and I was told this once, the very first time I ever brought my symptom tracking, this is, like, a couple months prior to my RA diagnosis, the doctor, and this was, like a concierge doctor that was meant to be helping me determine, you know, what was going on. She eventually did lead me to my RA diagnosis, but she said that, “What do you think it means that you made this list?” So, I’m like, okay, who made you this —? Who died and made you the psychiatrist? 

But okay, she was, she’s a good person. She genuinely thought the best of her knowledge, was that I was just a hypochondriac that was overly stressed about everything, and that, yes, I, at that point, actually, I had a definitive diagnosis of gastroparesis, so at least there’s something definitively wrong on my body. But it was like, something else is wrong, very off. But I was, my symptoms were that I was tracking, were, like, related to my GI and, like, something’s off. I’m trying to figure out what I can and can’t eat. And just, like, “What do you think this means that you made this tracking?” I’m like, it means that I feel shitty and I want to feel better. And like, I’m going to the doctor to feel better, but she’s like, “I think you need to, like, step away from the list making,” and like, and that’s just it. I think we just have to acknowledge that some doctors will just say that and yeah.

Elena:  53:26

And the other thing that I do is I don’t necessarily bring the list with me. It’s something that I review in the, like, in the waiting room before I go in. So, like, I have, I use Guava to track, which is amazing. But like, it makes me a little PDF while myself, and then I can say, okay, like in general, these are the things that are bothering me. And this is when it started. And I don’t, like, I mean, you can print out a PDF and things I generally don’t, because I find it gets in the way of, like, an organic conversation. But it just helps me sort of remind myself, okay, was I actually feeling bad? Was I not feeling bad? Sometimes I forget if I’m feeling well the day I go and I’m like, “Yeah, great, everything’s good.”

Cheryl:  54:02

I hate that. I always feel better the day that I’m in the office. I’m like, what is up with that? Except there’s been a couple of times my rheumatologist has been like, I like, she has to call me out. But this is just because we’ve had a relationship now for like 20 years that I sometimes, I really minimize my symptoms sometimes because I’m like, I just so badly want to be feeling good. I’m like, “Oh, it’s probably just this. It’s probably that I just,” you know, like, we went to Japan this summer. So, “Probably just that I went to Japan, and my, maybe my joints are still stiff from the airplane.” She’s like, well, that was seven days ago. You know that you were in Japan seven days ago. So, maybe we just, you know, yeah, so you kind of have to know yourself and know your own, like, I actually, ironically, I’m like, yeah, I’m accused of being a hypochondriac. I actually tend to be, objectively, more of a minimizer, you know, I actually tend to minimize what I’m going through. And that’s not good. 

Just FYI for the record, for anyone listening, for in rheumatoid arthritis, the analogy my doctor used years ago that really stuck with me is, you know, you don’t want to minimize your symptoms to your doctor, because it’s like a fire. The inflammation from rheumatoid arthritis is like a fire. So, you want to catch it when it’s really small and it’s much harder to catch, like, you want to catch it when one room is on fire, not the whole house. And so, the longer you wait, in my case, it was when, it’s always been when one medication is not working anymore. You don’t want to keep staying on it for too long and letting that inflammation — I know you’re nodding because, like, you know, but just for people listening, because I tend, I think it’s if you don’t know that you might say, “Well, let’s just, since we only, there’s only so many meds out there, maybe we’ll, like, we’ll squeeze all the time out of this med that we can,” you don’t realize that there’s a risk to that. 

Sorry, taking over your story. But, anyway, I those tips are really, are really helpful, for sure. Being organized. I always just do it on my Notes app, like I make a list of what I want to talk about on my Notes app so it’s on my phone, easy to keep track of. But you mentioned guava, which is a symptom tracking app, and it is very helpful. I’m going to put a link to that in the show notes. And if you’re listening to us on audio, by the way, like if you’re listening on your podcast platform, you should definitely look up the video version, because Elena has a beautiful cat that was there.

Elena:  56:16

She’s over there now, she’s off screen. 

Cheryl:  56:19

Yeah, she was. She was just curled up really cutely for a lot of the interview. But is there anything else you want to cover before we go to the rapid-fire questions?

Elena:  56:29

I don’t think so. Got a lot of it. There was so much. We covered a lot.

Cheryl:  56:36

Yeah, we did. We did. I just, I always ask that because, yeah, sometimes when I’m in an interview, I’m like, oh, I really wanted to make that point I forgot to make. But if you think of it later, that’s okay, too. Yeah. What are your best words of wisdom for a newly diagnosed patient?

Elena:  56:56

Loosen up your shoe budget. So, like, I’m like kind of cheap on certain things. And like, I like, I haven’t been doing it this year because I don’t, like, we’ve had enough going on to worry about saving money, too. You know, I’m a fan of watching my finances. And I got diagnosed, and I just went through a bunch of shoes. And I was like, I just buy a pair of shoes. And they weren’t the right shoes, and I would like try to stick with them and they were not right. And I just, I went through a lot of shoes. So, if you’re newly diagnosed, be okay with, like, buying a lot of new shoes. Like, it’s okay, it won’t last forever. You’ll find the ones you want, and you can keep buying those.

Cheryl:  57:35

Do you have a favorite brand?

Elena:  57:38

I wear — so, in the hospital, I wear, I’ve got these new ones. They’re called Cloves that are, like, wipeable sneakers, and they’re pretty good. I like those. I like my Dansko’s because they’re real hard, and when I’m wearing lead, they’re much more supportive. I don’t have as much hip or knee pain afterwards. But they’re not, like, cushy, they’re like, real hard. They just have aggressive foot support. They’re not good for running around, you’ll turn your ankles in them. So, I’ll wear those in the lab, and then I’ll wear, I like Hoka sneakers too, but they’re not wipeable, so I get like, weird stuff on them. I spilled a smoothie on it once, so it looks like it’s blood, but it’s really like blueberries. But then, there’s like, it’s kind of gross after a while. So, I wear those. And then, at home, and then sometimes in the hospital, Birkenstocks as well. But then, at home in Texas, certainly, I’m like Birkenstock sandals, like 100% of the time. 

Cheryl:  58:31

Yeah, we have the same exact taste. I literally, all my shoes are Dansko’s, Hoka’s or Birkenstock or like Mephisto’s that are, like, similar to Birkenstocks. And especially, I have Dansko’s I’ve had for like 10 years. So, they are really helpful. 

Elena:  58:43

I got mine in graduate school. I’ve only had one pair. I know my foot’s changed just enough that they cut off the circulation on the top, so I may have to get a new pair.

Cheryl:  58:52

Yeah, yeah. And they do, you know, typically, I have almost never had pain in my left foot, but I’ll get pain on the ball of my right foot, kind of like the, you know, with rheumatoid arthritis, you usually get pain in like the knuckle joints. That’s kind of like the equivalent of the knuckles in the foot can get inflamed. And the Dansko’s, I was talking about this with the podiatrist, what’s really nice is they make you sit more stand more on your heels than the ball of your foot, so you’re alleviating that pressure. 

Elena:  59:21

Yeah, and that’s like, the MCP’s are the ones that are, unless I’m on steroids, are always inflamed. So, like, the Dansko’s are like my dream shoe. I love them.

Cheryl:  59:30

They’re so good. But you’re right that if you’re trying to run in them, that you could definitely twist your ankle. Do you have a favorite arthritis gadget or tool in your toolbox?

Elena:  59:40

I do. So, I’m an exceptionally fast typist, and it was really hard to let go of this. But as sort of, when I was in fellowship and writing more and more, and my joints just came worse, I transitioned to dictation, and it’s been like a complete game changer. Because even when, like, my fingers are not inflamed, they still get more tired than they used to, and I cannot type as fast. And I was worried that I wouldn’t be able to speak as fast as I type. But with a little bit of practice, you can, and you’re not using any of your joints. So, I just have this little like, Dragon dictaphone, and I can talk into it, and it’s amazing. So, I do that sometimes with text-to-speech on my phone, too, if I’m having, like, a bad hand day. But for work, the dictation is huge.

Cheryl:  1:00:25

Yeah, it feels, to me, like it’s almost the standard of a lot, a lot of doctors now are using it because it’s just so fast. Or they have a scribe.

Elena:  1:00:33

Well, that’s nice. I don’t get fellow scribes. They certainly don’t give military those. 

Cheryl:  1:00:37

Well, let me tell you, who gets the scribes, the fancy dermatology. I have a wonderful dermatologist who’s not, she’s totally down to earth and but she works at a fancy dermatology clinic. So, I’m like, oh, my gosh, this is so over the top whenever I go there, I’m like, okay, anyway, sorry. But yeah, they always, they have a scribe to help, yeah. The gastroenterologist has a scribe, too, actually. Do you have a favorite book or movie or show you’ve been watching recently?

Elena:  1:01:07

So, we are horrible TV people. We like to put one season on or one show on forever. We recently made it to the entirety of Law and Order SVU. Well, at least you don’t want to think about it, right? You’re just like, all right, the next episode for, like, 25 seasons or something. 

Cheryl:  1:01:23

No, you like what you like. 

Elena:  1:01:24

And you talk and do whatever. Like, low brow.

Cheryl:  1:01:28

No, not at all. Look, there’s no — there’s no such thing as a guilty pleasure. People like what they like, and it’s not hurting anyone to like Law and Order. 

Elena:  1:01:36

But in terms of books, my probably my favorite book is a book called ‘In Shock’ by Rana Awdish, I think is the name of the author. But she is a — it’s a fabulous read, and it’s sort of what made me want to start posting my story. She is a critical care physician who, during the birth of her child, had a health syndrome, which is like the hypertension or something. She ended up in, long story short, ended up in her own ICU, like, ventilated, on dialysis, and she talks about the experience of being in that situation. And like, sort of the things we do in an ICU, like, we’ll do things like a daily awakening trial, where a patient who’s intubated on sedation, you take away all the sedation, and you see if they wake up to, like, see what happens. 

And she’s like, this was the most terrifying part, because, you know, you don’t know what’s going on. You’re like, tied down, you’ve got something in your throat, and all of a sudden, you’re like, awake, and then like, they like plunge you to like, they plunge you back into darkness, and they like, re-sedate you. And it’s like, every day. And so, just like hearing about that, and then she’ll talk about how, like, providers, like, we use a lot of slang, so, you know, like, “Oh, this one’s, like, tried to die on me last night.” She’s like, well, I didn’t really try to die on you last night. Like, that’s kind of rude. And so, to sort of, like, watch what you’re saying, and sort of, again, that perspective that you may not otherwise have. And it was, I read it in a day, like it was, it was so good,

Cheryl:  1:03:02

Wow, okay, it’s called ‘In Shock’. 

Elena:  1:03:05

‘In Shock’. Yep. 

Cheryl:  1:03:06

That is so — as someone with cleithrophobia, which is fear of being trapped. Like, that’s literally what we just described as, like, my nightmare of like being held down and like not being able to move and being conscious is just like, ah. But so, and yeah, the overall point is very well taken, that, like, you have to consider, yeah, the patient lived experience.

Elena:  1:03:27

We don’t think about it, right? They’re like, all right, sedation trials done. Under sedation, so. 

Cheryl:  1:03:33

Gosh, well, it’s like, they’re noticing, they’re knowing or figuring out now that, like a lot of people, and that they thought were in like comas were actually, like, conscious and, yeah, it’s just, yeah. I definitely would check that one out. Do you have a favorite mantra or inspirational saying? 

Elena:  1:03:50

Yeah, I, like, so I had a little meme this year. I know you’ve seen it going around, but there’s like this little hamster, and he’s got, like, star glasses or something, and she’s, like, driving, like, a purple car or something.

Cheryl:  1:04:02

Okay, I know.

Elena:  1:04:04

“The horrors persist, but so do I.” And like, you will ask me how it’s doing. I’m like, well, we’re hanging in there.

Cheryl:  1:04:10

Oh, my gosh. Wait, I need to, like, add that as the episode artwork for this episode.

Elena:  1:04:16

I’ll send you the I’ll send it to you because I have, like, bookmarked it and I, like, printed out and put it on my desk. The horrors persist, but so do I. 

Cheryl:  1:04:24

I love it. 

Elena:  1:04:25

And then, the one that sort of got me through a lot of things I did, like, some like, I did, like, mountain warfare training with some of the Marines and like, the bigger stuff you’re, like, “You can do anything for X number of time,” and it doesn’t really matter how much long it is, if I’m on a tough rotation, like, do anything for two weeks, right? Like, it’s just two weeks, or, like, anything for a day, or anything for three minutes, or whatever, it’s just like, all pain passes eventually. All bleeding stops.

Cheryl:  1:04:52

That’s like me getting, like, having it an MRI, or I’m like, I can just, I can do anything for 10 seconds. I can, yeah, I love that. I love that. What — and this is the, this is the vague one. This is the question, this next question is, like, the question that this podcast is literally like, trying to answer, like, implicitly. But to make it explicit, like, what does it mean to you to live a good life and thrive/attempt to thrive with rheumatic disease?

Elena:  1:05:23

I think it means to be able to do the things that are most important to me. Maybe not everything that I want to do, but the things that really are most important to me. So, showing up for my family, showing up at work, showing up for my health in a way that’s not horribly interfered with by symptoms. So, you know, like, I can tolerate some pain, but if I am in too much pain to do my job, or my fingers aren’t working well enough to do my job, that’s not living well. But if I’m at a little bit of discomfort, that’s okay. As long as I can show up and do what I need to do and do what’s important to me within reason, then I think we’re doing pretty well.

Cheryl:  1:05:58

I love that. That’s really similar to how I look at it as well. Like, maybe not necessarily. I mean, yes, in a perfect world, the symptoms would all go away, but a lot of the times, the best we can do is just not be completely interfered with, you know. So, I think that’s a very, very well-taken point. And you mentioned earlier that you started to share your story online more. Where can people find you?

Elena:  1:06:25

On Instagram mostly, or actually exclusively, because I like, can’t post on TikTok. I don’t know how to do it. My handle is @TheDancingPhysiologist, and it’s, you know, it’s really sort of still a personal account. I leave it open, and I do write about a lot of stuff. I think now that things are, knock on wood, have sort of calmed down a little bit, I’m writing a little bit less, but I do have a, like, a Notes app for future posts, but you’ll see me like hanging out with my best friend. But also, I do try to write some posts on sort of my experience and what I’ve learned from that, and what I take for that going forward. 

Cheryl:  1:07:00

Yeah, I really have to say I think you’re a really good writer. I mean, if you ever end up taking some of your posts and turning them into a blog or something like that, I think it would be amazing. Not to give you one more thing on your plate, which is very full, but, yeah, that’s wonderful. Well, thank you so much for taking the time to share your story. I mean —

Elena:  1:07:19

It was so much fun. Thank you for having me. 

Cheryl:  1:07:21

Oh, and I know you said before that you’re a listener of the podcast, which is, it’s always fun to have someone who is like a podcast enthusiast attend. And I hope, I hope that it was, I always say that, you know, I’m very enthusiastic about sharing my story, but I often underestimate the emotional labor that it can kind of take. It’s going to be tiring and emotional to go through all these, you know, details of realizing what you’ve gone through. So, thank you for taking that, you know, doing that emotional work.

Elena:  1:07:52

My pleasure. 

Cheryl:  1:07:53

Yeah, Teddy can tell. He’s, hold on a second. They say like, yeah, the dogs can kind of — there’s Teddy, my dog. So, if you, this is the teaser to listen to the YouTube, to watch on the YouTube. You can also see a link to a video on my podcast. Yeah, yeah. Teddy can tell when I’m starting to — it’s like they dogs get to know like, your winding down voice. Oh, my gosh, your kitty lets you hold her. 

Elena:  1:08:19

Yeah, she’s gonna scream here. She was just about to punch me. 

Cheryl:  1:08:24

She’s like, okay, I’ve tolerated it. 

Elena:  1:08:26

I’m done. 

Cheryl:  1:08:27

Yeah, yeah, oh, my gosh. Teddy’s like, can I just meld into your face because he’s a Cavalier King Charles, so yeah. Well, thank you so much. I’ll let you go get rest, much need rest, but we will talk later. Bye-bye for now.

Elena:  1:08:39

Thanks, Cheryl. Have a great evening. Bye-bye. 

Cheryl:  1:08:41

You too. Bye.

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