fbpx
Living through Diagnostic Purgatory and Rare Medication Side Effects: Rosemary’s Psoriatic Arthritis & Vasculitis Story
Patient Stories, Podcast

Living through Diagnostic Purgatory and Rare Medication Side Effects: Rosemary’s Psoriatic Arthritis & Vasculitis Story

2 months ago
88 min read
Add comment
FacebookXRedditPinterestEmail

Listen now

Video:

Summary:

In this episode Rosemary, a registered nurse, shares her journey with “diagnostic purgatory,” or the experience of having an unclear autoimmune diagnosis. Rosemary also shares her experience with a mystery skin rash that ended up being a rare psoriatic arthritis medication side effect: leukocytoclastic vasculitis triggered by drug-induced lupus, and an eventual diagnosis of Palisaded Neutrophilic and Granulomatous Dermatitis. 

Throughout the episode, Rosemary and Cheryl discuss the importance of coping skills for difficult medical experiences. They also emphasize the importance of finding the right medications, lifestyle strategies, and the role of psychosocial support. Uncertainty and setbacks can be overwhelming, but self-compassion, support systems, acceptance, and perseverance can help you pursue a fulfilling life despite health challenges.

Episode at a glance:

  • Chronic Illness Journey: The interview delves into Emily’s journey of living with chronic illnesses, from psoriatic arthritis, to developing drug-induced lupus which triggered leukocytoclastic vasculitis, and eventually being diagnosed with Palisaded Neutrophilic and Granulomatous Dermatitis (PNGD).
  • Medication Management: Rosemary shares her experiences with various medications, including Enbrel, Humira, and Plaquenil, discussing their effectiveness in managing her symptoms and the decision-making process involved in discontinuing certain medications. They discuss the importance in recognizing adverse effects, while balancing this understanding with the benefits that medications do provide. They also discuss the experience of arthritis medication side effects.
  • Lifestyle strategies: Rosemary emphasizes the importance of physical activity and wellness in her life, despite her health challenges.
  • Emotional Resilience: Navigating the emotional highs and lows with chronic illness can be overwhelming, from the initial relief of finding treatments to the grief and uncertainty of adjusting plans. Cheryl and Rosemary discuss self-advocacy, and pursuing fulfilling lives despite obstacles .
  • Adapting to Change: Rosemary and Cheryl discuss how to adapt to change, both in terms of treatment plans and mindset towards living with chronic illness, including exploring alternative treatments and embracing new perspectives.
  • Support: Rosemary reflects on the role of support from healthcare providers, online support groups, and in personal relationships – underscoring the importance of having a strong network when facing chronic illness.
  • Advice to Newly Diagnosed Patients: “You don’t have control of the fact that that happened to you, and you didn’t do anything wrong. All you can do now is choose how to react to it. Do the next right thing. Little by little by little, it’ll start coming together. And you’re going to be okay.”

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:

Rosemary McGinn

I was diagnosed with psoriatic arthritis 15 years ago, at the age of 15. I have also worked as a Registered Nurse for the last 8 1/2 years. I experienced a rare drug-induced lupus reaction to a commonly prescribed arthritis medication which triggered multiple complications, some of which are lasting. It was a challenging ordeal that I’ve recently reflected on with a lot of “hindsight is 20/20” feelings. I hope to spread awareness about recognizing potential adverse side effects, while also keeping in perspective how beneficial medication still is for many – including me!

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. Today, I have Rosemary McGinn here. I’m so excited to chat with her. She has a very interesting set of experiences both as a healthcare provider and as a patient. So, welcome, Rosemary. Can you let us know just real quick, where you live? And what is your relationship to arthritis?

 Rosemary:  00:21

Well, thank you so much for having me. I live in Georgia. I live in Cumming, Georgia, North of Atlanta here in the Atlanta metro. And my relationship to arthritis is I was diagnosed with psoriatic arthritis when I was 15-years-old about, I think it was 2008. So, in that, so it’s been about 15 years, which I thought of you because I think on your account, you had just said you lived, you’ve lived half your life with arthritis now. I have now made that milestone as well. 

Cheryl:  00:51

Wow. No, it is, it’s a trippy thing to think about. Yeah. And I would love to delve into your diagnosis journey/saga, you know, what were your symptoms? And how did you get diagnosed?

Rosemary:  01:08

When I was first, my first symptoms were — and I wrote about this, and I know you’re gonna link it — it was I was at a Jonas Brothers concert, which was my, that was my thing. I loved the Jonas Brothers. And I wore, like, I had no backstage passes, I was not going to meet them. But you know, you could. Like, I had to prepare just in case. So, I didn’t wear you know, walking shoes or anything like that. I didn’t think I had to. And so, I work cute ballet flats, and we’re walking and standing the whole time and everything. 

So, after that, my one of my toes, middle toe got swollen. And now in hindsight, I know now it was the very textbook sausage-like digit is what they would call it. That’s what I would know now. And it was swollen constantly, but it hurt, you know, pretty bad in the morning, the toe and kind of a ball or the, yeah, the ball of the foot. It would hurt in the morning and, okay, you know, I’d go to school, in high school, walking around all day. And it would it would fade. It would actually improve throughout the day, which was a little confusing, because you kind of, almost every day, you’re like it’s getting better and then, no it’s not. But the swelling was constant.

So, obviously, my parents were concerned, I let them know. And they thought maybe I’d injured it. So, I went to a podiatrist who was a really great guy and really perceptive. And that was one of, I think, noting that to him, that it hurt the most in the morning and the pain faded was a clue to him. And also, I had psoriasis. We already knew that. So, he asked that, to me, it seemed like he asked that out of the blue. He was like, “Do you have psoriasis?” I was like, what am I here for? I’m here for my toe, like what are you talking about? But yes, I do.

And he was the first person to say. And he said, I think you have psoriatic arthritis. And that was like, what? I’m 15, I don’t know if you understand. Can you look again? And that started the world. It was like, okay, then I got referred to a pediatric rheumatologist. And eventually, you know, moved on to an adult or, you know, rheumatologist and started treatment very conservatively at first with Mobic daily which is Mobic, is also called Meloxicam. It’s an NSAID. And I’m a nurse, by the way. So, I love the generic and brand name meds I’ll get into

Cheryl:  03:21

Oh, actually, that’s helpful, because I often forget the generic names.

Rosemary:  03:24

So, yeah, so Mobic I think is the brand, Meloxicam is generic. And then, it wasn’t until I was 18, that I started my first biologic, which was Enbrel. And then, but as we’ll discuss, I’ve moved on from a couple of medications. 

Cheryl:  03:40

Yeah, and, you know, you mentioned being surprised at age 15 and getting a diagnosis, like, with the word arthritis in it. What were some of the other emotions that you were having at that time?

Rosemary:  03:52

Um, it was a lot of like, feeling confused, because I think my parents had — since my parents were obviously adults, I think they had a much better grasp on the whole picture here, or maybe the gravity of it. I thought it was, like, no big deal or I don’t know. And it’s I wrestle with that still sometimes in I’m always like, I don’t want to be dramatic, but so, you know, I always am a little self-conscious of that. I don’t want to make it seem like it’s this big deal. And it didn’t feel like a big deal.

At first it felt like, okay, I guess I’m gonna get a swollen joint every once in a while, but then I’ll take a steroid pack, I guess, for a week and it’ll be better, and it’ll come and go. And it didn’t, it didn’t knock me down at the beginning. You know, it actually, it was it was a swollen toe. And I started an NSAID. And that, to me, did not feel like a big deal. And I didn’t have maybe a lot of perspective of this is going to be with me for the rest of my life.

And I think my mom did. And my mom is a nurse or she’s retired now, but she’s a nurse. And her mother, my grandmother, and her sister, my aunt, both have, or had and have RA. So, she and my aunt was diagnosed I think a little, I think a little younger than average, too. So, it wasn’t, there was a family history a bit there. So, my mom is definitely familiar with it, seeing her family members go through it.

And I think and I wrote in a response, because my mom cried, she teared up a little bit in an appointment one time because she just — and mom’s do this, you know, for their kids, you feel. You feel everything your kids are feeling, I think we feel bad for them. And I remembered being like, mom, get it together, kind of going — I didn’t understand. So, like, I was kind of at that age where, I don’t know, I knew it was something but it was kind of a gradual oncoming for me. And there was a lot of, when I went to college at 18, I became a nursing student. I think going through nursing school started to give me another perspective, and it kind of continued from there.

Cheryl:  06:01

That’s so common, though, to not truly understand the nature of it. And it’s kind of like a one of the support group members that has been in the alumni group for my Rheum to THRIVE support group, she likes to say — Gittel, she’s has been on the podcast before — but she likes to say, you know, ‘Ignorance is bliss, but knowledge is power’. So, you kind of have that trade off. I, similar to you, I actually didn’t know that any of my systemic issues were due to rheumatoid arthritis until I was in occupational therapy school. And it wasn’t even like that was a big focus in the textbooks. I just happened to make connect the dots.

So, they were talking about multiple sclerosis and autoimmunity and how that can cause fatigue. I was like, wait a minute, is my fatigue —? This is six years after my diagnosis, is my fatigue related to my RA? I thought it was just, I overdid it last night or, you know, so I think that’s, again, just for anyone else listening, you know, it’s sometimes you can be hard on yourself.

I wish I knew how serious it was. But I also think it’s complicated. I don’t know whether you have this experience. But sometimes the doctors are they want to err on the side of like optimism. And they’re like, “Oh, this is like —“ they’ll say like, and in this true. It’s the best time in history to be diagnosed with psoriatic arthritis or rheumatoid, because there are such effective treatments, but it kind of glosses over — it’s still there’s no cure, you know, there’s, it’s going to be with you the rest of your life.

When you, I’m sure were planning, family planning, pregnancy planning, you have to think about this in every aspect of your life, think about your career. So, anyway, sorry, going on a side note.

But I do want to delve into your — I know that people listening might have questions about nursing school, because that’s a big question people have is what kind of careers can I do with this condition and how you manage that. But first, I’m going to be linear with our schedule. With our, we have questions we talked about beforehand. And one of the unique aspects of your story is that you’ve had a rare drug-induced lupus reaction to an arthritis medication. And this is something that, you know, is even though it’s rare, it’s good for patients to know that this could happen. So, can you kind of walk us through what happened? 

Rosemary:  08:14

Yeah, absolutely. So, this was, yeah, and I want to emphasize, like you said, it’s very rare. Read about it, you know, now after the fact that I know, I read about it, really, the incidence right now among the class of drugs that I’ll speak about, which are TNF inhibitors, which is a common drug class of biologic medications for arthritis, as I’m sure many of your listeners know. And actually, it’s actually used with some, like, Crohn’s and stuff, too. And ulcerative colitis, just as another side. But it’s, I’ve read that they’ve reported incidents as 0.1% of patients.

So, it’s one of those side effects when they’re reading really fast at the end of the drug commercial, and they’re like, this can happen, this can happen, this can happen and you’re not listening anymore, and you’re like, okay. It’s kind of one of those. So, I was not something I anticipated. Like I said, when I was 18, I started taking Enbrel and then I was on it for two years, very well controlled. Minor, you know, infrequent flares. And then, when I was 20, you know, you are immunosuppressed on these medications to a degree.

So, I actually got strep throat but I didn’t know. I don’t think I had it as severely as I’m, you know, the symptoms present as severely as they would have perhaps if I wasn’t on an immunosuppressants, which is something I think people don’t know, too, that sometimes your immune system reaction is sometimes what makes you feel sick in a way, you know, sometimes. And I think that’s kind of what happened to me in this case when I got strep throat, I didn’t know. And if you leave strep throat untreated for a while, it can cause some problems.

So, I got petechiae all over my body, my trunk, like my torso, and which are like the small red dots all over me. And but also my psoriasis flared like crazy. I got a head-to-toe psoriasis reaction. So, this was the, this was not the drug-induced lupus reaction. This was a combination of things going on, where they then found out I had strep throat. Another really perceptive doctor that I went to at the time. So, I got an antibiotic and but there was the psoriasis was flaring, too, and then the joints were flaring. So, they said, you know what, I think it’s time for you to come off Enbrel. Let’s try a different biologic, I think embroil has run its course for you. And that’s an intimidating thing, too, to have to switch your medication. And because they’re, you know, I think you know that, like, you get a little attached to it. And you’re like, okay.

Cheryl:  10:37

Oh, completely. And I just want to point out that you, on the blog post — I don’t know if it’s called the blog post. But on Medium, you wrote an article called ‘Sensible footwear: A Yearslong Journey for a Diagnosis’. You have some pictures of what happened to you. And I think these pictures are really illustrative of about what you’re about to talk about as well. But they’re pretty severe, you know, and I have a hard time visualizing in my head sometimes. So, I recommend you look at the link in the show notes or just go to Medium.com and look up ‘Sensible footwear: A Yearslong Journey for a Diagnosis’. Okay, keep going, sorry.

Rosemary:  11:14

Oh, sure. So, yeah. And I didn’t mean to get into the Enbrel so much. So, anyway, they were like, well, you gotta switch. Why don’t we try this one called Humira? And I think Humira had maybe at that point been out for almost maybe 10 years. But anyway, okay. And so, that was when I was 20. And great. Again, back under control; everything’s fine. We’re back to the status quo. And it was very similar medication. Inject sub-cu, subcutaneous injection. I don’t remember if it was every month or every other week, I can’t remember now. 

Cheryl:  11:45

I think it’s one of that, they, it’s variable. Some — 

Rosemary:  11:50

Yeah, it depends on the dose. 

Cheryl:  11:51

Yeah, yeah.

Rosemary:  11:52

Yeah, so I don’t remember. But similar to Enbrel very similar the way you administer it, all that stuff. And same drug class, a TNF inhibitor. So, I took it for four years. Well, for four years total. But so, when I was 22 going into age 23, I was working as a nurse in a hospital. And that’s when like arthritis symptoms started to kind of be a little more, like, I started to have a little bit more fatigue. I was having pain after work in my feet, my legs. And but sometimes you say to yourself, well, I have arthritis. So, what do I expect?

So, I wasn’t too upset about that. But I was noticing, like, at the end of — you stand a lot in the hospital. And with working with patients, which I’m sure you know, in your work as an OT. So, I was noticing some red dots, you know, that kind of stuff. Not a lot, but a little bit sprayed across my feet at the end of the day, but they’d be gone by the morning. If I slept, they’d be gone. So, that was kind of for me, like, yeah, whatever. And I moved on. Like, I don’t know, I think I think I ignored a lot of things in hindsight. And — 

Cheryl:  12:59

That’s so common, too, though. People often say like, they you never know whether you’re over-reacting or under-reacting when you go to the doctor. 

Rosemary:  13:07

Exactly.And sometimes, sometimes too, even with when you — when I, like I said, I was feeling more tired. Sometimes I’m like, am I tired because I have arthritis or am I tired because I’m a human and everybody gets tired? You know what I mean? So, you also feel like I don’t want to jump at everything that happens. But so, when with those, they would kind of come and go and I was like, okay, some red dots, whatever.

But it was when this bump appeared on my knee. I was on my left knee, kind of flesh-colored, kind of pink, painless. Just a bump. It was my skin. It wasn’t part of the joint. It wasn’t part of — it was very sub, very much on the skin. And I didn’t know what it was, and it wouldn’t go away. I waited probably at least a couple of weeks. So, I went to my PCP. And he was like, it might be an abscess. Like, maybe you had an ingrown hair or something like that. Maybe it turned into an abscess. Why don’t you take an antibiotic, like, conservative approach first, which I appreciate. So, he was like, take an antibiotic. And I was like, okay, so I did. And it did nothing.

So, I went back to him. And I was like, it’s still here. And so, he took a biopsy. And he told me it was an abscess. He said, that’s, yeah, it’s still, it’s an abscess. So, you just seen a different antibiotic. This one didn’t cover it. This one will. And I just didn’t believe — I don’t know why I didn’t, I really can’t explain to you why, I knew that it wasn’t an abscess, but I knew it wasn’t an abscess. I was like, it’s just not. And I can I can get into it later as to why he may have thought it was an abscess because the bottom line is that it was fluid-filled to some degree. B

ut that’s kind of a whole other part of it. It was a neutrophilic sort of drainage in it. But it was much more than that. It was not an infected abscess; it was an inflammatory thing going on. So, or a different sort of inflammatory thing, maybe I should say. But I was young and impatient, and I didn’t like having ugly things on my skin. I was very, I was well-controlled with psoriasis. I mean, Enbrel and Humira had my psoriasis almost non-existent most of the time. So, I just went to a surgeon. I was like, I don’t care. I went to a general surgeon; he can just remove it. This is small, no big deal. And he, and that’s how he felt too. I said, “Can you just — I don’t know what it is. Can you just get rid of it?” He’s like, sure, for sure.

So, that was in outpatient. Just sat in his office, local anaesthetic. Okay, cut it out. He’s like, “I’ll send it for pathology. I mean, I’ll let you know. But it’s gone.” I said, okay, I had a few stitches. And he called me with the pathology. And he was like, it’s some kind of — there was a little bit of necrosis, but he thought the necrosis was from the previous biopsy from the PCP. And he was like, but also just inflammation. Nothing specific. I don’t know. Weird. And I was like, okay, and I didn’t care. It was gone. I didn’t care to pursue it more. Except it wasn’t. It was not gone.

And yeah, I guess, disclaimer, here’s one of the first kind of medically gory pictures you might see on the blog post. It grew back much bigger than it originally was, in that the stitch, they removed the stitches. And there was kind of a drainage point with the stitches that never closed. I went back to him to say, “Hey, this isn’t closing,” he put some silver nitrate on it, which is a little, a little treatment you can use to close little things like the little openings in the skin like that, I guess. And he said, it’s fine. It’s a little cautery method, and it didn’t close. I didn’t.

And the whole thing grew back multiple times bigger. It maybe was the size of a pencil eraser. Now it was the size of a ping pong ball. And I was like, oh, my. Like, not only did it not go away, it got so much worse. So, the first lesson I learned was — I kicked myself so much because I already had psoriasis. I already had skin problems. I should have gone to a dermatologist first. I don’t know why it ran to a surgeon. But like I said, I was impatient, maybe. And I was worried about the looks of it, maybe. I don’t know. So —

Cheryl:  17:19

Hindsight’s always 20/20. I have to remind myself that every day, you know. And now, your story, by sharing it, you’re maybe helping others make different choices.

Rosemary:  17:30

Don’t necessarily run to the, to cutting into yourself right away.

Cheryl:  17:35

It’s just such a nurse thing. And my sister’s a nurse. So, I felt like there’s, you’re so tough, you’re like, sure, cut me.

Rosemary:  17:42

Like, I was like, just do it, whatever I don’t know. And anyway, and this is not, this is no discredit to the surgeon. He did exactly what I asked him to do. He was like, I can get rid of it, sure. That’s what I’m here for. So, anyway, obviously, I was like lesson learned. Let’s not do that again. But more concerning now, and also simultaneously, another bump appeared on my elbow, which is my left elbow.

So, now I’m like, oh, my gosh, this is crazy. And now, a lot of things, if you care to read the blog post, this keeps it a little linear in my head. It’s hard for me to explain it all because this was happening around 2017-ish. But from 2016 to about 2018-ish, this is kind of all taking place and it gets a little jumbled in my head, but so the bump on the elbow shows up. I’ve got the bump on the knee has grown back.

And now, a lot of things are happening at once at the same time. Those red dots are still happening, if you remember that I talked about. But they’re kind of ever so slowly and gradually getting a little bit worse or taking a little bit longer to fade, or hurting a little bit more. Like, I could, instead of just seeing them, I could kind of feel that they were coming on while standing or things like that.

So, I went to a local dermatologist where I was living in Indiana at the time. And I saw dermatology nurse practitioner, and she looked at them and she said, “I think it’s keloids, and we can inject them with Kenalog.” And Kenalog’s this corticosteroid, I think, it’s a steroid. And she thought if we inject them locally, that’ll calm it down. But just a note about keloids is keloids are something that are kind of a hypertrophic or an overgrown scar. But they’re usually they’re not, yeah, it’s a condition that people have, but they’re in response to an injury to the skin. Something has to happen to the skin for a keloid to happen.

Cheryl:  19:40

So, it wouldn’t explain the initial appearance but it would explain after the surgery it being bigger but not why it’s there in the first place. 

Rosemary:  19:50

Exactly. So, with the knee, you’re right, that would track for the surgery, sure. But why was it there in the first place? And with the elbow, there was no — why would that be a keloid? I didn’t hurt my elbow. But I was kind of, I was like, okay, sure, do the Kenalog. And I was just like, yeah, you could be right, I guess. What do I know? I don’t know, I wasn’t working. I’m a nurse, but I’m not, I don’t know. I was working in GI at the time, I was very tuned into GI things. I was doing colonoscopy, assisting with colonoscopy and EGD’s, and things like that.

So, we did. And actually in hindsight, too, the Kenalog injections, although she was wrong about the keloids, Kenalog injections was a really reasonable approach, though, too, and was actually something suggested again down the line. So, it definitely didn’t hurt the situation. But we tried a lot of, like, several rounds of Kenalog injections, and just like nothing happened, nothing improved. And also, I can’t remember exactly, they all were slowly starting to pop up. I slowly, at some point, one came on my right knee now. A

nd so, I called, at one point we had kind of stopped with the Kenalog injections, and I called her office and I said, I’d like to speak, can we review this with one of the doctors? Not to insult her, but to, like, can we, like, we need to do something else, this isn’t working, and the other ones are appearing now. And they just didn’t call me back. They did not call me back. You would call, you would get, you know, the front office, maybe scheduler or assistant or maybe they transfer you to a medical assistant or maybe a nurse. And they said, you know, the office policies will call you back in two to three business days. And I’d say, okay, and I’d wait two to three business days. And they wouldn’t call me back.

So, I called them again. And I probably call them with the waiting, with the quoted amount of time, I probably call them three times and then waited and never got calls back. And this was before, too. So, again, this was like maybe 2017. I don’t think I had a patient portal with them. I’m not sure that that was so prominent then, that you could just very easily — it definitely existed, but I don’t think I had it with this office. So, I went to them. I went there in person one day, and I was like, um, nobody’s calling me back. And again, I just walked up to the scheduling desk, and they’re like, “Well, let me go on the back and talk to somebody,” and then they came back out.

And they said, well, they’ll call you back. So, I was just oh, you know, I was like, okay. I’m done with these people. They’re not helping me. And now in the meantime, let’s say now, about two, I’ve got another one now on my heel, one of my right heel has come up. They’re slowly coming up. So, I go to, I was living in Indiana, but I grew up in the Chicago area and where I was living in Indiana, it’s only about an hour and a half away from Chicago. So, I was talking to my parents who were living in that area still and my husband, who I wasn’t — we weren’t married yet, but was probably my fiancee at this point. He was very busy with work.

So, my dad and I got, I got myself an appointment with a Northwestern dermatologist and my dad took me to downtown Chicago where the office was. They were within the northwestern health system. It wasn’t like, you know, the university. It was the health system. I go see him. And it’s like, you know, it’s a skyscraper. It’s intimidating. I grew up in the suburbs, you have to go, literally, we took the train, we took an L, we like walked a little bit, and you go to a skyscraper. And we were on the 30th floor. It was intimidating.

And he sees it and kind of explained — but and I have to note at this point, the dots, the vasculitis, they weren’t present that day. And they weren’t yet so constant. They just weren’t there that day. Because I hadn’t worked. I had slept well. I hadn’t been standing for 12 hours. And I think I mentioned them, but like I said they weren’t there. And I was more worried about these bumps. Those were the things that were the constant and so I, so he took a biopsy. So, we’re at like biopsy number three, I don’t know.

Cheryl:  23:50

I made a bingo board to fill out here.

Rosemary:  23:54

I know, a lot of biopsies. And, um, so he’s, you know, he was like, I will let you know, like, the biopsy will tell, like it was like, you gotta wait for that. So, okay. So, he called me and eventually with those results and he was like, I think what you have is something called ‘Erythema Elevatum Diutinum’, EED, which is a mouthful. And I was like, tell me more. And he was like, it’s something that can occur in people who have existing autoimmune diseases or problems which you have, so that tracks, and but it’s benign.

And he said, and I’ll never forget the quote, because I was talking to him on the phone. I’ll never forget it. He said, “If it really bothers you, we can try to,” like, it was that phrase, “If it really bothers you, we can try to do something about it.” Or we can, you know, you know, that’s, you already know, surgical removal doesn’t work. You tried Kenalog injections. It’s mostly cosmetic. It’s mainly, it’s benign, for the most part. It’s not something that’s going to really hurt you. And I was like, oh, okay, I’m being dramatic. Like, I guess this is not a problem. That was kind of, I was very sensitive.

And I do want to like throw in, again, I probably was more tired than usual, I might have been more sensitive than usual more like I was a little hyper. So, that I just was like, okay, I’m being sensitive, I’m being silly or like I’m overreacting, why am I pursuing treatment for this? This is just because I’m vain, this is a vanity issue. So, I was like, okay, message received nothing to do about it, I guess. It’s just something like psoriasis or something like psoriatic arthritis where I just have to accept that I have another diagnosis on my list of diagnoses.

So, I was like, okay. And but so now, you know, life is continuing and they’re on my feet now, too. I’ve got a bump on the bottom of my left toe, I’ve got a bump on my — I misspoke, my left big toe, my right second toe, the back of my right heel, the outside of my left heel. And, like I said, to recap, the elbow and both knees. So, I’m like, these — and these are coming up, like a new one is coming up every month or so. And now, the problem cannot be ignored about the red dots anymore. I was, they would last longer, they would take longer to fade. They burned. You could —

Cheryl:  26:25

You really have to look at these pictures. Because when you’re saying dots, this is, they are extremely like in your — you have, you know, pale skin. These are extremely red. I’ve never, I’ve had skin issues. And I’ve never had anything this — maybe when I had chickenpox when I was a kid, I don’t know. But these are not just little looking like acne or something. So, not to be like, it’s, you know, but I just —

Rosemary:  26:48

Oh, yeah. So, dots does sound like a euphemism, in that they really did start as dots. But you’re right. The picture in there is when they were, that’s what I’m saying. They progressed, too. That’s when it couldn’t be ignored. They got worse and worse and worse, to the picture you’re referencing, that was about as bad as they would go. And, and actually, at times worse, you can see on that picture on the ankle bone, like the malleolus, that one had ulcerated into a wound at some point.

It was standing was painful, it felt like my legs were burning. I’m sure all of this was contributing to fatigue. They themselves were painful. And they became raised, too. They used to be flat, but then they became raised. It was really becoming like alarming, obviously. And in the meantime, too, I was, I decided to leave the hospital, I couldn’t do the 12-hour shifts anymore, which was really emotional for me. It’s actually kind of still emotional to talk about because I just felt like I couldn’t do it. And I was, like I said, I was working in what they call endoscopy, which is like mainly GI, some pulmonary, some, some random other things. But you had to be on call, too. Because sometimes overnight, you might get an emergency.

So, you know, you just share that, but you rotate on call and weekends overnight. But in addition to 12-hour shifts, I could not physically do it. And I was only like 23 or 24. And I just felt like such a, oh, like I just couldn’t believe — this was this was probably the first thing in my life that I felt like changed — I felt this was the first thing in my life that felt like an option was taken away from me because of having arthritis, which I still, I don’t know why in hindsight I hadn’t really yet connected to my arthritis yet. I knew that it was like, oh, I’m this person who’s prone to autoimmune things, but I didn’t know exactly what was happening yet.

Cheryl:  28:46

Well, remember, you keep saying you didn’t know, but this was this is a 0.01% or 0.1% chance of happening. So, if we lived our lives considering every 0.1% chance thing, we would literally never do anything because we would be just considering things all day long. So, I mean, I’m similar to, very similar to you that it’s really hard not to beat yourself up when, you know, when you find out things that connect the dots. Not trying to make a ton of dots.

But in retrospect, and I think that’s a very profound thing to work so hard for a career – and you know, I’ve, I mean, occupational therapy school was hard, I can only tell you the things I’ve heard about nursing school, how hard that can be. So, to at such an early age have to give up part of it, give up part of your hopes and what kind of like a, quote unquote, ‘normal’ 23-year-old were dealing with things and ‘normal’, quote unquote, 20 — I will say quote unquote because I don’t like the word normal, but, you know, 23-year-old would not normally have to contend with. I guess I do like the word normal ’cause I just used it like five times. So, you know.

Rosemary:  29:55

Well, and I see what you’re saying with that. Yeah, and also, what I thought in my head which we can speak to later when you said you thought people might have questions about nursing school, I had a picture in my head of what I thought a nurse was, and what I thought like being a nurse was. And I thought, so, it that it was really — I was, it was hard to wrestle with kind of.

So, I went from the — I was really fortunate though because working in GI at the time at that hospital, I was working with a lot of gastroenterologists who also had their own practice and they had their outpatient setting as well. So, I moved, I applied at their outpatient endoscopy procedure center, which so I was doing the same job, basically, but not in the hospital. I went to an outpatient setting where you don’t have 12-hour shifts, because it’s an outpatient office and not even open for 12 hours. You’re just there at the regular business hours and no on call, so I wasn’t on call overnight or on the weekends. And I did need to make that shift.

But, I mean, ultimately, it was still standing for good amounts of time, but not as, not as physically demanding as the hospital. So, this was all — it was we’re hitting the point now where it was getting pretty, like, I was getting pretty down and emotional and anxious. And so, anyway, I went back then to my rheumatologist in Illinois, like I said, I’m from that area. And when I had moved to Indiana, I loved that. She was treating me since I was 16. I never left her. Like, I even, I went to college in Wisconsin, I moved eventually to Indiana. And while I was in Wisconsin, while I was in Indiana, I mean, I only saw her every — it varied on how my condition was going at the time. But our regular appointments were maybe every three months or every six months. It kind of varied.

But I would always go back for her. Because my parents still live there, it was easy enough. So, I went back to her in Illinois. And now, see, I have to kind of cut the Northwestern guy a little bit of a break because he didn’t see the vasculitis like, which is what it was, spoiler alert. He didn’t see the dots, as I’ve been calling them. And like she did, she saw them in full. They weren’t fading anymore. They were there. So, she, long story short, she referred me to the Cleveland Clinic. And that, you know, we had to wait a while to get in, but we got it through her referral. And I, so waiting for the Cleveland Clinic, the bumps that I speak of on my feet were opening into alternating wounds, and I was bleeding through my socks while I was working. And I was.

And now I was going to local wound care, too. And it was all just a mess. But now it felt like you just have to wait for Cleveland, wait for Cleveland. They’ll fix it, they’ll fix it. So, we went and they saw rheumatologist who immediately got dermatology on. They were really really good about like working together across specialties, which is really hard to find just in sort of the normal outpatients. They’re like a tertiary care centre. When you’re just in the outpatient setting, getting your dermatologist to call your rheumatologist or, you know, getting specialties to —

Cheryl:  33:11

The only time that ever happened for me was pregnancy because the stakes are so high. Other than pregnancy, it’s really hard for me, at least.

Rosemary:  33:18

Me too, with pregnancy. Yeah, I did get my — That’s a whole thing we can get into that, too. When you start pregnancy and rheumatic things and autoimmune things. Oh, man. But yeah. So, they were really wonderful. Actually, her office was like, on the third floor and dermatology was on the fourth floor, and then they were literally in the same building. They were a floor apart, they talk to each other, whatever. So, she got them involved immediately. But all the answers didn’t come immediately. You know, it was like we had to work this out.

They thought — they were going to, they were testing me for RA, they were testing, they thought maybe I had lupus. They thought maybe — I got like a chest X-ray for sarcoidosis or something. I was getting more biopsies. They biopsied the, quote unquote, ‘dots’ as I’m calling them, and they biopsied the bumps again, so now we’re on like the fourth biopsy of the bumps at least.

So, they pretty quickly, the dots were biopsied very pretty definitively, I guess, shown leukocytoclastic vasculitis, which is like the mouthful for saying like inflammation of your blood vessels, but it was, for me, it was that vasculitis can sound like a scary thing because I know there are versions of it that like can affect organs and stuff like that, like a lot of internal stuff. That’s very serious. I’m not saying, I’m not minimising this, but it wasn’t immediately life threatening or anything. It was my skin. It was skin vasculitis. But painful, painful nonetheless. So, it was, there’s a lot of we got to start treatment even before we have answers and you kind of have to reconcile with that. You have to just start taking the medications even though you don’t know what’s going on.

So, it was starting steroids. They, like I said, they thought methotrexate, maybe you have RA. But my rheumatoid factor was negative. They were doing that, they were drawing my — it’s called a lupus anti-coag panel. Which this experience gave me a whole new perspective, sympathy, like appreciation for people who go through lupus diagnosis because I never knew how — I kind of thought there was a test for it. And it’s you have lupus or you don’t. It’s very much not like that. I was not really familiar with the lupus diagnosis process.

Cheryl:  35:30

It was covered — oh, sorry, I was just gonna say it’s on the show Dr. House where they they repeatedly, like, it could be lupus, it could be lupus because it’s such the great mimicker, right. It could look like so many other conditions. That’s why I always think of when I think of the lupus.

Rosemary:  35:45

That makes me — I just recently listened to Dr. Amigas, is that how you say it on your podcast? 

Cheryl:  35:50

Oh, yeah.

Rosemary:  35:51

She was like, I get to be like Dr. House. 

Cheryl:  35:53

Yeah, yeah, but yeah, so like, yeah, and in this case, it’s like rheumatology saves the day in the sense that like, if nothing else from this story, I almost wonder — sorry not to be like just skipping ahead. But if people are thinking, okay, if you’re having something weird go on, if you don’t know whether or not it has to do with your inflammatory arthritis, and when you have some sort of mystery, always loop and get the rheumatologist in the loop because you never know what’s going to relate and what’s not relating to your inflammatory arthritis. 

Rosemary:  36:27

Yeah. And again, in hindsight, I, you can tell from what I’ve said, I waited to involve my rheumatologist and I’m somebody, I already had arthritis. I was already established with a rheumatologist. And I did not even I did not go to her right away. I didn’t. She came later because I was like —

Cheryl:  36:44

I would think the same as you. I would think dermatology, like, and I’ve had times where I’ve gone and I’ve had skin issues. And the rheumatologist has just said, “Oh, that’s a term thing. Just go to the derm, it has nothing to do with your RA,” so it just as easily could have been that. But yeah.

Rosemary:  37:00

And I don’t know, too. Maybe kind of being sort of in the, I mean, being in the medical, as a nurse, you work with a lot of doctors, and some of the, you know, some of the best people I’ve met. Not all of them, but a lot of great people. But you do, you are kind of privy sometimes to the like, oh, we can’t deal. They think we can deal with this, but we can’t. They gotta call the other person or call the other person. And so, you kind of like, oh, I don’t want to be that patient, or so, you know, you get a little self-conscious because you’re on the other side of it sometimes. yeah.

So, anyway, it was a lot of, it was like a 4-hour drive to Cleveland from where I was living in Indiana. They stayed in great — and they by the way, I mentioned this earlier, they did have the patient portal function on the phone at that time, which was kind of like, oh, they are so high-tech at the time. Because the sort of local offices at the time did not have that yet. They used Epic for their charting.

They had my chart, it was so — oh, I got my lab results right on my phone. I couldn’t believe it. Like, which that’s a double sided, what’s the expression, double-sided, double-edged sword, because you get the results, like, before they even call you about it sometimes. I’m like sitting here, yeah, you’re like freaking out, you’re like, oh, my gosh, something’s abnormal. And then, they call you and they’re like, “Oh, that’s not actually that big of a deal.” Or, you know.

Cheryl:  38:17

Oh, a hundred percent. I had a brain MRI to rule out MS because I was starting to have some symptoms of MS. 

Rosemary:  38:24

Oh, that’s scary.


Cheryl:  38:25

Well, I’d also — it was a confounding variable because I’ve been on RA biologics for a long time, which you can for some of them get MS as a secondary thing or, but I also had that car accident in 2016 where I had a concussion and a neck injury. So, if you’re trying to get dizziness, you know, is the dizziness, most likely it’s the concussion, post-concussion, but you don’t want to say everything is due to the concussion when really, you actually also concurrently have like MA.

So, I got the result and exactly the same as you said, I got it through the portal. And it’s like, we had saw it. I knew what an incidental finding meant. I knew that it wasn’t a — normally an incidental finding, this is something where they weren’t looking for it. And it doesn’t necessarily mean a huge deal. But it said a cavernoma, and a cluster of abnormal blood vessels usually found in the brain and spinal cord. It was in my frontal lobe and I could see it on the image. It’s not like a tiny little weird thing. I was like, that’s not normal, you know.

Rosemary:  39:20

And it’s your brain. 

Cheryl:  39:22

It’s my brain. Of course, the neurologist was so blasé, like the default, like, those rarely ever, nothing happens. You just get monitored occasionally and make sure they’re not bursting into your brain. But even if they burst they normally just stay localized. I’m like, well, if it just stays localized, I need my frontal lobes! Like, anyway, long story.

Rosemary:  39:41

Oh, the brain. Yeah, that is the thing that I was getting. And like I said, I didn’t know what that, like, lupus anticoagulant — that, for people who don’t know, that’s like multiple tests kind of together. It’s a panel. And so, it was like some of them were normal, but some of them were abnormal.

And I’m like Googling it and my mom’s Googling it because we’re like thinking that, you know, or it just comes through whenever and you’re like, you don’t want to see anything abnormal, but of course you get it. And sometimes it’s maybe indicative of something or sometimes, like you said, maybe it’s an incidental finding. Or it’s a, you know, we could draw it again later. Maybe it was just a one off or something. So, it was a lot.

Cheryl:  40:21

What do they call that? Do they call it remnant?

Rosemary:  40:22

Yeah. The term — I know, I was trying to find it —

Cheryl:  40:26

Artefact. Artefact?

Rosemary:  40:27 

Yes. Yeah. That’s like, yeah, that’s like on heart monitors. But yeah, so the same concept. Yeah, I think that’s what we could call it. So, it was, yeah, it was a lot of constantly feeling like, do I have lupus? Do I have RA? Do I have —? So, and then, in the back, in my head, too, I’m like, okay, I have skin problems now, these other skin problems. But now, I also have some joints. If I have lupus, is it still that I have psoriatic arthritis or not? Or did I never have psoriatic arthritis? Has it been rheumatoid this whole time? Like, it was very confusing.

And the way I’m talking about it, it sounds like this was all happening quickly. It wasn’t this was months and months of follow ups and driving back and forth, and labs, and whatever. So, they knew it was vasculitis. I was on steroids for that. Like I said, they put me on Plaquenil because that’s a lupus medication and I think an RA medication, too. Could be for either or both. Methotrexate, they started. And then, they also started something called Dapsone, which they thought could help the, I think, side note might also be — no, I don’t remember, I’m not gonna say it because I don’t remember. But Dapsone was for that, that was to target the bumps.

But the problem was Dapsone, this is not a side effect. This is a known thing with Dapsone because of like the mechanism of the drug or because of the — I can’t remember the word for this either, but the just how the, the mechanism of action, I guess. It causes hemolytic anemia; it causes like the hemolysis of red blood cells. So, that’s not the kind of anemia where you can just eat iron-rich foods and it’ll be okay. It’s like it’s, it’s just what it is, I guess.

So, I took the Dapsone and within three weeks, you’re supposed to get your blood tested right before so they can establish a baseline and then they’ll test you again in a month. And I only made it three weeks before I started having terrible like symptoms. Like, very, not fatigue, like lethargic and like terrible headache. And so, I went to the doctor and sure enough, like, I was like, my hemoglobin had dropped like over three points, and I was like at a 13-something which was in the normal range. And then, it was down to like a 10, which is not, which is below normal range. Not horribly anemic, but I think the precipitous drop really maybe emphasized how terrible I was feeling.

So, that drug was not working for me, which I still, I’ve heard you talk about this on your show before. And this was a tough one for me, too, because it was one of the ones that they had a lot of hope for. And maybe it could have worked and I felt like I just can’t handle it, and it’s my fault because it’s making me too tired or it’s making my head hurt. And I’m like, I’m just whining about this medication, but you were truly anemic on it. And it’s very hard for your body, I think, sometimes to compensate with that when it’s not used to it. But then, I think if I had stuck it out, maybe my body would have learned to compensate.

So, that was a tough one. But I ultimately stopped that medication. But anyway, and then they said, after some time, they were like, let’s resume like a biologic for your psoriatic arthritis. They had, by the way, I should say, I guess, they had ruled out RA. They had ruled out sarcoidosis. And I do think at this point, we knew it was a drug. And they did say, listen, this, you don’t — we don’t think you have lupus but we think you’re having a drug induced lupus reaction to your medication.

Cheryl:  43:44

Right. To Humira.
Rosemary:  43:46

Humira. Yes, to Humira, which now I had been taking Humira for four years. And this felt like I had been cheated on or something. I was like, what are you talking about? My medication did this to me? Because when I tell you it had my arthritis symptoms under control, I hadn’t seen my psoriasis since that incident I talked about and I was 20. I had not seen a patch. So, it had been so good to me is how I kind of felt if you, if I can, like, if I can, you know, it feels like it’s a person I’m talking about. It’s a medication. It had been —

Cheryl:  44:21

Betrayed, you got betrayed by it.

Rosemary:  44:23

I was so betrayed. I said, what are you talking about that this, you think this did this to me? I felt so, yeah, it was, that was very upsetting. And so, they had stopped it during all these testing. We had already discontinued it. And then, they did, you know, they landed on that after, sometime after they discontinued it. They’re like, you know what, we do think this is what it is. It’s a very rare side effect. 

Cheryl:  44:48

And I just want to, I’m putting this link in — which was updated June 2023 — in the show notes that about drug-induced lupus, but just to know that it typically goes away when you discontinue the drug so it’s not a permanent case which is, which is a good — so it’s just, it’s reassuring to know that I mean hopefully no one will go through what you had to go through, but if, but there is —

Rosemary:  45:13

I do want people to know I do not have lupus. Like, this medication did not give me lupus. I had some lupus-like symptoms for a period of time, which is what they attributed the vasculitis to. They said we think you had a drug induced lupus to reaction to Humira and that triggered vasculitis in you, in my skin. And then, they said, okay, now separate from that, now you have vasculitis. We think the vasculitis is the underlying cause of these bumps of the skin issue. So, it’s kind of like this, we had to follow sort of this chain. This sort of chain reaction, I guess, I should say. And so, I’m like, okay. But we, so we knew all of this, but we still didn’t really know what the bumps were and very not sure what to do about them because surgery didn’t seem like an option anymore

. We already did Kenalog injections, I was already on high dose steroids for everything else. That wasn’t — systemic steroids — that wasn’t doing anything, at least to the bumps. And I was on all these medications. So, they’re like anyway, let’s just, let’s, if we get your psoriatic arthritis now maybe back under control, let’s just see what happens.

So, they started me on Cosentyx, which is a different drug class and is not a TNF inhibitor. It’s an it’s an IL-7, which is an interleukin seven. And it’s a newer — I’ve heard you say on your show before, too — they’re always coming out with new drugs, which is so true. We’re always having a lot of options come out. So, Cosentyx is a, it’s not, you know, very new now, but I still think maybe now it’s less than 10 years old.

Cheryl:  46:45

It’s like the TNF inhibitors were the first class, like Remicade, Enbrel, Humira. And I’m trying to — I know I’ve been on IL-7. I’m trying to remember if it was Actemra… Or is it Actemra or Orencia? I kept trying to look this up as we’re talking. But yeah, they’re the newer, newer one. 

Rosemary:  47:05

Yeah. So, it was a little newer, and they were basically like, “Listen, don’t ever take a TNF inhibitor again, it doesn’t agree with you. Let’s try a different class of drugs. Here’s Cosentyx. Give it a try.” Like I said, the vasculitis was still very much a problem. It was, it was still definitely meaning to be controlled with prednisone and things like that.

So, I was on a few different medications, a few different immunosuppressive medications to be exact. And I had these, these bumps where I’m calling them bumps, but they were draining. And what they we found out, too, is a neutrophilic drainage, just kind of like a white blood cell drainage. Not really important, but the point is they opened. They would open sometimes, which is a source of infection, right. And I was on a lot of immunosuppressants.

So, I got a cellulitis infection in my elbow, and in my left, the one on my left elbow. And I had been at work that day, and my elbow was really hurting. And it got worse and worse throughout the day, and I got home and I couldn’t even bend it or straighten it fully. But I had long sleeves on. And I, you know, I’m like, I’ll just, let me just, I don’t want to look at this right now. I knew it was gonna be something bad and I didn’t want to look at it. So, I waited till I got home. And it was, it looked infected.

So, I went to the, my husband took me to the ER and it needed IV antibiotics. I was in the hospital for five days. The IV antibiotics — and part of the reason it took so long was because the IV antibiotics gave me an acute kidney injury because they were so like intense. And somebody at the lab didn’t draw my trough on time. It’s a whole thing. But just because they’re so busy, I don’t blame the lab or the phlebotomist. They’re always so, like, they’ve got a million things to do all the time.

So, anyway, and by the way, an acute kidney injury that was also a very temporary thing. My kidneys are fine. I don’t have problems in my kidneys. But so — 

Cheryl:  48:45

I mean, this is a lot. Like one day you’re working and the next day you’re hospitalized. 

Rosemary:  48:50

Yeah, I had to like, I texted my manager at the time who was a really, really lovely person, really wonderful to work for. I texted her, and I had just been at work with her all day. And I was like, “Listen, I can’t come in tomorrow. I’m in the hospital.” I was like getting admitted. It was like the evening. She’s like, what are you talking about? I just saw you like three hours ago. And I was like, I know.

But like it’s — and I was, I was really transparent with her throughout a lot of this, because of how she was really wonderful and always, you know, treated me with a lot of respect in regards to this and gave me a lot of understanding which I really, like, I don’t think everybody is lucky enough to be in a work setting where they’ll afford, you know, time off that you need or just be understanding that I hated to call in sick the time. That I got anemic from the Dapsone, I called in sick that day. And I obviously call them sick when I was in the hospital.

And I really hated that. I hated having to do that because I just feel like my coworkers will see me as somebody who’s not dependable. I’m going to make them short staffed today. They’re not going to have the extra hands. It’s something I really — that was another, that became, that was like an emotional thing for me, too, but it was something that I was beating myself up about. Because I have to say, again, like, my coworkers, my manager were really, really wonderful to me. Nobody gave me like a hard time about it. Which I know I was really lucky for, because maybe not everybody has that.

Cheryl:  50:13

And you would think, and I was gonna say, well, in healthcare they’d understand. That’s not true. I’ve heard too many stories of people whose coworkers should understand who were not. 

Rosemary:  50:21

Absolutely. 

Cheryl:  50:23

So, that’s really —

Rosemary:  50:24

Well, and part of this, though, I think, too, was because I was in the outpatient setting now. So, I do have to say, I think if I had still been in the hospital setting, it is harder for people to understand, to have that maybe empathy sometimes in the hospital, because you are so short staffed all the time. You’re overworked. You’re — the physical demands are crazy. The hours are long. And I’ve been on the other end of that, too, where I would, before I was working in GI, I worked on a med surg floor. And if you came in one day, and somebody had called in sick, it could be deflating. It wasn’t — I didn’t have anger towards the person, but you just knew how it was going to affect your day. And that’s in that inpatient setting, right. So, that’s why I really just beat myself up about it.

But again, this was outpatient. So, the stakes are a little lower. But an inconvenience to everybody, I’m sure, nonetheless. So, yeah, that’s tough. But if anybody listening works in the inpatient setting and you have to call in sick, please don’t feel bad about it. Like, nobody’s mad at you personally. The conditions are just tough. Like, it’s just grueling conditions. And I get it, and my heart goes out to you. Yeah, but yeah, so brief hospital stay, which was very much a bummer. And very, yeah, that was a low point for me. I was having a lot of pain at that point. The wounds on my feet were not good. It sucked. It sucked.

Cheryl:  51:49

And then, had you already gotten married at this point? Or no?

Rosemary:  51:52

I had just gotten married. Yeah, my husband, and this was like through sickness and health, right? I had just gotten married. I think we were like maybe we were less than a year married by the time I was in the hospital. We got married sometime in 2018. And I was in the hospital January 2019. I say sometime in 2018 like I don’t know, it was April 2018. [Laughs] So, it was less than a year.

And actually, my husband was a resident at that, he was a family — he’s a family practice. So, he was, he was in residency at the hospital that I was admitted to, because that’s where we live near. And it was funny, like a nurse came in to help me with something when I was in there, not to help me but to, you know, do whatever they have to do, give me medicine or whatever. And they saw him standing there. And they recognized him as one of the residents. And I think he was working that day. So, he might have been wearing scrubs. And he was like, “Oh, I’m so sorry. You’re rounding? I’ll come back later.” And he was like, leaving. He’s like, no, no, I’m not, like, come on. So, that, like, that was like a whole ‘nother — I felt bad for him too, because he was so busy.

Cheryl:  52:55

That’s a grueling schedule, though, too, right? Like, they’re not home that often like, so you didn’t —

Rosemary:  53:01

It was the worst timing, too, because he was on his — so, with family practice, you know, they do different rotations throughout residency that vary from inpatient to outpatient, to medicine, to OB, peds, pediatrics, but either in the inpatient setting or the outpatient setting, or they have elective rotations maybe where they’re learning about other things. He was on his medicine rotation, which is the like, ah, you’re inpatient, you’re doing the medical floors, the adult, it’s the busiest one. Yeah, that’s the busiest one. Maybe they have to respond to the codes or something. It’s the whole thing.

So, anyway, so that was tough. It was — yeah, so my husband, I have to give a lot of credit to him, because this he was going through his own stressful time with work and, you know, completing his residency training. And his wife’s in the hospital and his wife has like wounds on her feet which he was, many a time, he was the person doing the wound care and my feet when I was just, like, over it and like couldn’t even deal. So, um, you know, he obviously is one of the people I couldn’t have gotten through all this without.

So, anyway, the hospital stay comes and goes, and Cleveland is still following me. And so, they invited me to a dermatology conference. They said, we want to present your case to the attendees who are other dermatology professionals, I think mostly locally in the area. But we host these conferences. So, would you come so then they can look at you in person? And I was like, oh, yes. Because I thought, wow, what an opportunity. Like we’re gonna get a think tank together of these people who certainly somebody will know. Somebody will know the answer, or somebody will say, “I’ve seen this before,” whatever. And I really thought in my head, I was like, I’m gonna get to sit in on this. I’m gonna go to a room or a lecture hall or something, and they’re gonna put up a slideshow and I’m gonna get to hear all of their thoughts, everything they’re thinking, and I’m going to be an active participant in this.

And that was not true. I got there. They put me in the appointment room that I had always been in, and they’re like, we’re gonna go talk about you, and then we’ll come look at you. Like, okay, which I do kind of understand. I mean, that is how they treat it for all the patients with these conferences, I get it. But it was, it was like, we’re gonna go talk about you in the other room, and then all these people are gonna look at you that you know we just talked about you. And I was like, okay.

Cheryl:  55:20

Like, I know rheumatology is really unique in many ways. And I’ve been a patient partner at the conference before as well as speaking as an occupational therapist, and we’ve had patient representatives on panels, and they treated us like equal partners, you know, so I’m not, not to be like dermatology sucks or something. But no, just saying like, it doesn’t have to be done that way. Like, it could be a way that felt less like you’re like a zoo animal they’re just like looking at, you know? 

Rosemary:  55:51

It’s funny you say that, because that’s how I — right afterwards, I remember the term I was saying to somebody I was talking to about it, said, “I felt like a circus.” Yeah, like a circus freak or something. I felt like the I was the attraction at the circus or something. I don’t know. So, it wasn’t — no, it’s okay. Because I really did, like I appreciated their efforts. And I appreciated them presenting me at this case, like, I was grateful for that. But if I could change anything, I wish I could have been privy to the conversations because I was of course, I was interested. I wanted to know.

But so, anyway, I sat. She, she was this one, she was a dermatology resident who I spoke with the most and she, I couldn’t say enough nice things about her. She was so nice. She was like, “Okay, this is what we’re gonna do. You’re just gonna sit here, we’re gonna go talk about you. We’ll be back. And then, here, let me open this poster.” And it was this like, trifold poster that you use at your science fair when you’re like in junior high or whatever. Like, I had to do that in seventh grade. And they had every picture they had taken of me, of the wounds, of the skin, of the vasculitis across this time period that I had been going down, which had been months.

And I just started bawling. I lost it. I started crying. It was like the first time I cried in front of any of these medical professionals. And I guess I just, it was like, it felt like I just got hit in the face with it. It was like I just got hit by, like, I don’t know, I just got smacked in the face with everything that had been going on.

And that was one of the first times, too, where I was like, maybe I’ve been like ignoring the emotional aspect of this and burying my feelings a little bit. Because it was like a, it erupted. I just started crying. And I think she was a little taken aback. She was like, “Oh, my God, I’m sorry. Like, do you want me to close it?” And so, that was tough. And I was like —

Cheryl:  57:40

It kind of feels like, to me, I’m imagining it was like that you put a frog in boiling water, it jumps right out. But if you put it in lukewarm water, and you slowly turn the temperature up, it’s like you would have these things that had grown over time. And you’re just, you’re coping with it by saying just get through the next week, get through the next day, get through the next hour. And then, when someone presents you with this poster, it’s like you’re all of a sudden hit with the boiling water. You’re like, oh, my gosh, you know? And —

Rosemary:  58:05

I was like —

Cheryl:  58:06

Yeah. Oh, sorry. Go on.

Rosemary:  58:07

No, you go. Tell me. 

Cheryl:  58:09

No, I was just gonna say that somebody my doctor or my therapist finally convinced me of — he’s a psychiatrist. So, he’s a doctor, and he does clinically like hour-long therapy sessions, which I actually never knew psychiatrists could do that before I started seeing him.

But anyway, he says, you know, “Avoidance is a great short-term strategy. It’s never a good long-term strategy.” And so, in this case, you’re avoiding coping with your emotions, because it’s just too difficult in the moment you have to just, you’re in survival mode. And then, once it’s resolving, you’re giving yourself the emotion, the space to actually confront it. Anyway, yeah.

Rosemary:  58:45

Well, and that’s it. So, and it probably was a good thing that something finally forced me to confront it because I was, I was kind of, I think, I’m glad to have heard you say that because I don’t think I put a name to it. I think avoidance is what I was doing.

And I was like, it was the first time I had a lot of, like, I felt bad for myself. Like, I had a lot of compassion — I looked at all that skin. And I was like, who is this happening to? This is horrible. Like, I felt like it was pictures of a different person, but I simultaneously knew that it was me. So, I suddenly felt so sad and like bad and like frustrated.

And I started crying. And she was, she did, she closed the poster and they reopened it later. Like, I’m sorry, I can’t look at it, it was too hard to look at. But it wasn’t a lot of time either to kind of get myself together because like, I was like, let me compose myself.

So, you know, she gave me some tissues and she was really nice, but she had to go present my case. So, she left and I, you know, got it together. I had to roll up my sleeves and my pants and my whatever, that this was where you feel like a circus attraction or whatever comes into play because you’re like, here I am. What do you think? And it was, it was like an hour of people cycling in and out of the room. And have you tried Kenalog? Have you tried Dapsone? Have you tried —? I’m like, yeah, yeah, yeah, tried it already. Thank you. So, and it was just a lot of wow, whoa, that’s weird, huh? Oh, isn’t that just the darndest thing? And I was like, isn’t that though, but can you help me?

Cheryl:  1:00:19

It’s like, it’s like you’re willing to do the emotional labor of showing your story in return for hoping to get some answers. And then, when you don’t get the answers, it’s like that trade off suddenly maybe doesn’t seem — that’s so rough. 

Rosemary:  1:00:32

Yeah. So, I think through all of that they did land on like the diagnosis, but not, did not ever — and I’ll get to this, I guess, but to this day have not landed on a treatment or cure, maybe. So, they call it ‘Palisaded Neutrophilic Granulomatous Dermatitis’, PNGD. Don’t ask me to say it again. I’m just kidding.

Cheryl:  1:00:57

I’m putting, I’m putting a link to it. I had to look it up. I had to look it up. And I put it in the show notes.

Rosemary:  1:01:04

Yeah, sorry. That’s a long one. And actually, to people who read the blog post, I have some hyperlinks within there as well for anybody who’s interested in any of those further readings. But similar to that other diagnosis I had said about erythema elevatum diutinum it’s kind of seen with people who have autoimmune problems, I think, especially with inflammatory problems. Not, you know, technically harmful. Obviously, it’s a problem if it’s going to open up and cause infection or wounds. But then, limited research on it, because it’s very rare.

But what they’ve known is what I’ve already said basically, Dapsone, Kenalog injections, maybe. One of the links had maybe another medic — I don’t remember what the third medication was, but I know it’s one that I already had tried, they had run through it all. So, this is actually a testament again, too, before you have the answers, sometimes it’s okay to continue with the treatment. Because even going back to that dermatology nurse practitioner, what we tried was not necessarily, that wasn’t the wrong answer. We just didn’t know what it was yet.

So, we had already tried a lot of stuff. And in the, again, the limited data limited research. They say some people experienced spontaneous resolution, and I’m like, well, that sounds great. And also, treating the underlying disease. So, I think psoriatic arthritis, drug-induced lupus, vasculitis, a lot of stuff was going on. But we were treating the other diseases and they’re still here.

So, basically, it was kind of like we were at an impasse, I guess. There was a point where a couple of the ones on my feet had, they were open wounds, and they ended up, they did go away. Two of them went away, and one of them has gone away forever, and the other one grew back. And so, I, to this day, I still have one on my right heel, my second toe, on my right foot, the outside of my left heel, my elbow, and both of my knees. Those are all still here. However, they are not draining. They’re not, like, they’re like dormant volcanoes, I guess you could say. They don’t open, they don’t drain, they’re not wounds.

So, I do think all that inflammation in my body was we regained control over all of that. But for whatever reason, I have not experienced the spontaneous resolution or maybe the medications we tried didn’t work. Maybe if I ever revisited Dapsone someday. There’s a lot of should I bother trying to pursue it still? Should I not? I don’t know.

I’ve mainly come to a place where I’m fine with it. It’s a little awkward wearing shorts and sandals sometimes and your feet and your knees look a little strange. But you come to accept that, too. It’s been years now. So, that’s okay. Cosentyx is doing great for me. I’m back to the no psoriasis, no, you know, not a lot, not a lot of joint flares. Not a lot of, you know, minimum not a lot of pain all the time or anything like that.

So, Cosentyx was the answer for me for my psoriatic arthritis for now, you know, until the next which may or may not happen. And the bumps are here. Maybe someday they won’t be. But it’s okay. 

Cheryl:  1:04:16

Well, and that’s, that is like the, I call it the chronic illness see-saw. Like, I made this visual for it a couple of years ago, but where you’re like, it could be better. It could be worse. Like, how much energy mentally do you spend, or should you spend trying to get to the bottom of it and fix it, versus how much energy should you spend adapting to it? And saying, well, like the null hypothesis in science, right, is that things won’t change. Like, that your intervention won’t work.

So, what if it does, what if they never go away? I’m kind of hearing between the lines is that it’s tricky, and I don’t think anyone knows the right answer. Like, at the end of the day, I have to tell myself I did the best I could with what I have. Who knows, like, I could Monday morning quarterback it tomorrow and say, “I should have done this, I should have done that,” but I can’t.

I’m already exhausted. I don’t want to exhaust myself more by letting myself be haunted by that could’ve — would’ve, could’ve, should’ve. I’m just, right now as we’re talking, I’m finishing up the Taylor Swift themed episode that’s going to come out of at this point when this comes out. 

Rosemary:  1:05:19

I love that.

Cheryl:  1:0520

Yeah, there’s this song ‘Would’ve, Could’ve, Should’ve’, you know, and I’m like it’s hard not to be haunted by that. And so, along, that’s really good — all roads, I will say, like, all roads lead, when you’re dealing with chronic illness, they all kind of lead to, in my experience, like, there’s a mental and emotional mental health aspect, right? Where you’re like, you get to the end, you get to a point where you’re like, how do I cope with this?

And so, earlier, it sounded like, when I said avoidance, I mean the way that my therapist explained it is like, when you shove stuff down, like your emotions down, you avoid feeling them because you’re like, I’ll deal with this emotion later. I can’t handle it right now. And again, it’s a very, it’s a functional short-term strategy that gets you through the day.

But there’s a saying in therapy, that which we resist persists, you know, so it’s gonna come back to us someday, potentially. And so, how, you know, did you — I’m always curious to hear if people went to therapy, and, you know, how have you coped with the mental side?

Rosemary:  1:06:28

Yeah, so during all this, in the thick of it, I feel like this was kind of my acute phase. I was like, make no mistake, I was anxious. And I was upset; and it was hard. So, like, life was kind of, you know, my regular sort of days, but it was tough. So, I did start therapy. I did it while I was still living — we eventually moved to Indiana.

But while I was in Indiana, I started therapy. It was around the time of my wedding, too. I was like, I was also like a bride, like, freaking out about my wedding, also having some other issues. So, I went to therapy. I did briefly try an anti-anxiety medication. But this was right about the same time they were just telling me I had a drug-induced lupus reaction. So, psychologically, and in hindsight, that was not a great idea for me because I was like, okay, I’ll try this medication. And it was, we’ll talk about drug class again, it was an SSRI. And when the, that was a primary care doctor who prescribed that to me. I said, my anxiety is terrible, blah, blah, blah.

And he was like, “Okay, I just, you know, it’s incumbent upon me to let you know about the side effects, you could have something called serotonin syndrome,” and blah, blah, blah, getting into, he got into all the side effects. And I took that medication one day, and that night, I had a full-blown blown panic attack about it.

And I was like, I’m having serotonin syndrome, because and I fully acknowledge it was a psychosomatic reaction. I had, I had just found out I had a very rare 0.1% drug-induced lupus reaction. So, I had convinced myself I’m gonna have all the rare, you know, medication, and I was already taking all these prednisone, and I was already —

Cheryl:  1:08:06

Prednisone makes me so anxious, by the way.

Rosemary:  1:08:08

Yes. Prednisone hypes you up. I don’t know if people who haven’t taken it or when you take the week-long pack, it’s kind of not as much but I was on like 60 milligrams of prednisone per month, daily. It was a lot. I had the moonface; I gained some weight. I was like a mess

. So, then, here I am, oh, sure, I’ll take this other medication, who this doctor was just doing his job letting me know what the side effects were. But I had just also found out about this other side effect. So, I assumed I was gonna, you know what I mean?

Cheryl:  1:08:39

You’re like my track record for rare things is like —

Rosemary:  1:08:41

I know, I was like, well, I guess I’m gonna get this too. And so, I just, I had a complete mental block to it. I couldn’t take it, which is not the fault of the medication. It was my experience with what was going on with me at the time? So, I abandoned that. And I went to therapy, which was like, it was the only thing I could do at the time, because I was not, I would, like, I would have been just, oh, if I had to add another medication, you know?

Cheryl:  1:09:04

I totally get that. Yeah. 

Rosemary:  1:09:06

Yeah. It was very, it was helpful for me, was the first time I ever did it. It was eye opening for me in a lot of ways, because there was a lot of coping strategies I never knew existed.

And those made a lot of difference for me like breathing techniques and the, like, I don’t know if you’ve ever heard of like the 4-7-8 breathing if you start to get overwhelmed. That’s a big one for me. Love it. And that really helps me feel, that’s like, maybe that’s also a grounding technique.

So, I learned some grounding techniques, too. Like, feel where you like, maybe touch your fingers together, feel the ground, feel your surroundings. A lot of mindfulness stuff. I also have always loved doing yoga. So, I was kind of, it was easy for me to sort of intertwine that with yoga, maybe try some meditation. I don’t do any like formal meditation, but just I think more mindfulness is maybe the way to describe things like that, that I’ve tried.

Cheryl:  1:09:59

And before I talked to you, you shared a few bullet points. And I latched on to this phrase you wrote, which is that, you know, “Mindfulness techniques, breathing techniques, and accepting that it’s okay to not have control.” That was, that’s one that I still work on, I have to work on that one every day.

Rosemary:  1:10:17

That’s a huge one for me for me, too.

Cheryl:  1:10:19

Because control is so comforting. And control is helpful if you have a controllable problem. But sometimes our problems are not controllable or not solvable.

Rosemary:  1:10:29

This was the perfect example of that. It was like this long-lasting issue, ultimately mostly temporary, but this kind of long, ongoing, like, issue that I, yeah, like, and as I said, with every bump that popped up on my skin, it was like I had lost a little bit more control. Because those were like, I’m not even doing anything, I’m just sitting here and bumps are popping up on my skin, you know, like I didn’t, it was so — and I think I’m similar to you in that way that when I was in therapy, I was putting a lot of the anxiety, again, this was avoidance, I was putting a lot of the anxiety on my wedding, instead of on this medical problem that was happening with me. I said, it’s just the wedding, it’s just the wedding. Once the wedding is over, I’ll feel better once the wedding is done and the planning is done and all that’s done, I’ll feel so much better.

Because I also saw that as that was something I could control. I had a date for my wedding. It was going to come it was going to go and it would be fine. So, I was like, everything’s gonna be fine after the wedding. So, I kept putting all of that on, it’s just the wedding. And my therapist was like, I think you have, yeah, issues with control, she was like, you have to be okay with not being in control. Because that’s life, you know?

Cheryl:  1:11:45

Oh, my gosh. So, I mean, that’s such a beautiful thing, it’s liberating. Yeah, that the therapists felt comfortable bringing that up, because I feel like it is really hard to tell a control freak to not being controlling, because it’s like, the first response is, like, my first response to my therapist, I have had two therapists. One’s female, she’s a psychologist, and other one’s male, he’s a psychiatrist. And she was, you know, the first one that introduced me to this concept. I’m like, but what if I’m really good at being in control? I just try really hard.

And the problem the thing is people who are high achieving, people who, you know, they often, things like anxiety and the desire for control, you can channel them in a functional way, or you can channel them in a non-functional way. It’s not to say that you should never be in control in your life, but we have, but it’s liberating to accept the situations where you’re not in control if you have chronic illness, particularly.

So, my kudos to you for being open to that. Because that took me multiple times of multiple therapists till I actually was willing to let go of control. 

Rosemary:  1:12:47

And I kind of, I mean, I will say like, again, credit to my husband, he was like very encouraging of therapy, and especially because he, like, the SSRI was just not going to happen for me. I think that’s it. That’s the right answer for a lot of people. And it maybe could have been the right answer for me if the stress in my life was not caused by a different medication, maybe. It’s just I was so averse to it, I couldn’t. So, it was like there was you, got to do something. And it was like, I guess I gotta do therapy.

Cheryl:  1:13:15

And it can go — just like with, you know, natural methods and medications for rheumatoid arthritis, you can do, like, I take a small dose of an SSRI as maintenance for my anxiety, and like panic attacks, and I do the work in therapy, too. And it just the anxiety meds for me helps take the edge off.

But I just want to normalize, I had the hardest time getting my body adjusted to them as well. And I think if I hadn’t been — I had been on anxiety meds a long time ago. And then, I’d stopped them. And then, I started them again. And I remembered that the first time they also were hard to get on. So, I had to push through that initial like week or so of feeling worse before it gets better. It was like I had that comfort of knowing that that had happened before. But I almost, the first two nights that after the second night, I had to be like, I am going — I am out of my mind, like, this is —

Rosemary:  1:14:07

Yeah, it makes you feel like jittery kind of or something, right? And like you said, yeah, no, yeah, I agree with you. 

Cheryl:  1:14:14

No, no, and sorry. I’m like, I want to make sure. I’m like, wait a minute, I need to stop talking about my story. But no, thank you for sharing about going to therapy and what helped you. And I also wanted to give you a chance to share, we’re not going to be able to do all the rapid-fire questions, which is totally fine, because they’re not actually rapid-fire. They’re like long questions.

But what but the one I want to ask is, what are some of your best words of wisdom or things you’d want to say to somebody who might be newly diagnosed either with psoriatic arthritis or with palisaded neutrophilic granulomatous dermatitis? I can’t say it.

Rosemary:  1:14:55

Yeah, I can’t say it half the time either. I gotta see what I said, I don’t remember. Oh, yeah.

Cheryl:  1:15:01

Jurassic Park?

Rosemary:  1:15:02

Yes, yes, thank you. I love movies, that’s like something you would know about me almost off the bat. So, I like derive some of my wisdom from movies and quotes that stick out to me or morals or lessons. And Jurassic Park, I have to clarify, 1993, the original movie, not like the Jurassic World, the first, the first Jurassic Park. And that was, it’s a book I love to but, you know, the book is by Michael Creighton. But the movie is great.

And I was first exposed to the movie. There’s a scene in the movie where the guy who is creating Jurassic Park, the dinosaurs are out, bad things are happening. Everything’s already, chaos has already ensued. And he’s saying to Laura Dern’s character named Ellie in the movie, he’s like, “If I do this, and if I do this, I can still get it back under control, we can still —” like, people have died in the movie at this point. And he’s like, “I can still, we can still open, it’ll be fine.” And she like has to kind of have like a, like a big come-to-Jesus moment with him. And she said, “You never had control. That’s the illusion.”

And for somebody like me, and like you’ve described as well, that was also like, oh, you have to accept sometimes. And like you said, not in all aspects of life, of course there are aspects of life that you have control over certain things. But as with chronic illness, and anything, there’s the dinosaur or something in your life that you can’t control a dinosaur. You think you can train it or get it to stay behind an electric fence or whatever? I got news for you, like vasculitis ain’t it. Like, I don’t know.

So, when you said for in the realm of newly diagnosed, you’re going to feel like, what did I do? Like, what did I do that this happened to me? And what could I have done? And what if this? And what if that? And you don’t have control of the fact that that happened to you, and you didn’t do anything wrong. Like, all you can do now is choose how to react to it. And I’m not saying it’s always going to be, like, I was over here having panic attacks myself, you’re not always going to have like the perfect day. But you just have to move forward. Which brings me to the other quote I mentioned.

And my response to you which was from just totally 180 on the movies. You know Frozen II the cartoon? There’s like a, yeah, there’s a point in that movie where Anna is like, she’s at her lowest point. And she could just, she could choose to despair, she could choose to give up and despair, and just lay down and say I’ve lost, you know. But that’s the point in the movie where she sings this song. And it’s, I think the title of the song is this, too, but the chorus is just ‘Do the next right thing’. And that resonated with me, too, because it’s when I’m at my worst, when I’m feeling very overwhelmed.

And when you’re trying to process something like a new diagnosis, I would understand if you feel overwhelmed, because sometimes it involves, well, we’re gonna have to refer you to another doctor, you’re gonna have to make all these other appointments, you’re gonna have to start these new medications, you’re gonna have to maybe make some lifestyle changes or modifications.

And so, what I would say to those people is just do the next right thing, meaning pick a task, pick a task. Do one thing today. I used to be the kind of person to when I was younger, I’d have a to do list with like 20 things on it for the day. And then, somebody I don’t remember where I read this, or who told me this, but don’t ever have more than three things on your daily to-do list. Because you’re kind of, you don’t know what’s going to happen. This relates back to control, too. You don’t know how your day is gonna go. Just do the next right thing. And just pick one task. And I think little by little by little, it’ll start coming together. And you’re going to be okay.

Cheryl:  1:18:43

That’s such particularly good advice for newly diagnosed because I think a lot of people are like, well, how am I going to do this? And what am I going to do? And what about my career? What about my family? What about having a kid? You know, and you’re like, whoa, you know, one thing at a time, you have to give yourself that time and space and that patience.

Last question. This is a big one. But I know you’ve wrote some notes out before which are really great. What does it mean to you to live a good life and thrive with chronic illness/psoriatic arthritis? 

Rosemary:  1:19:13

Okay, I have to refer back. I think that — yeah. Yeah. So, I’m a big proponent of yoga, I do love yoga, and something even if you don’t want to, or if you don’t practice yoga, there are still lessons to be learned from it. And one of it is to honor your body. That’s the thing that I hear a lot in yoga, and it’s just acknowledging how amazing your body is. I’m so grateful for my body. My body has challenges but I’m so grateful for the things it can do. It will never cease to amaze me.

And with that in the theme of honoring your body, though, also don’t push yourself past your limits. Like we have to, like, I think I was experiencing this sometimes in pushing, trying to push through working in the hospital when I couldn’t, like, when I was in so much pain. Or when I was working that day, and then after work, I went to the hospital. Like maybe I should have stopped a little sooner and said, “Hey, my elbow hurts,” like it’s okay to acknowledge limitations, but also like, just celebrate and be grateful for all the wonderful things you can do. And also, I tried to focus sometimes, too, on the people around me.

And I think life is about relationships and connecting with people and acts of service and serving other people. That’s when I’m like the most joyful and happy. So, it’s kind of a mixture of that. It’s like honoring your body. And you do have to take — it’s the oxygen mask thing on the plane, you have to put on your own mask before you can help anybody else. But also, I really, I really believe that life is about your relationships with other people and connecting with people and helping people. And that is where so much joy can be derived from. I found that in having a child, and getting married, and my friends, and my work and patients I’ve met. So, that’s life is crazy, but it’s great also.

Cheryl:  1:21:10

I love it. No, I really, I’m a very extroverted, like, relationship-oriented person. So, I really resonated with that as well. That definitely gives me energy and gives my life meaning as well. So, I think that that’s really beautiful. And where can people find you online if they’d like to connect further? 

Rosemary:  1:21:29

Yeah. So, I don’t have like a huge online presence. But I’ve just forayed into sort of blog writing on Medium or which I know you said you’ll link. So, that’s where you’ll find me there. And then, I’m on Twitter, where it’s just where I would post things that I would write, too. And I believe my Twitter handle is @RosemaryMSN, because it’s mostly directed at my, like, my healthcare interests and such. So, that’s that little shout out to my nursing.

Cheryl:  1:21:53

Yeah, I love that. Thank you so much. I mean, again, you mentioned that it’s, or even if you didn’t mention that, it can be hard to tell your story. I mean, I know that this isn’t the same as feeling like a circus animal. Because we’re talk — you’re able, you have the microphone, you’re able to talk about it.

But it’s still, I’m often surprised. I tell my story so often, it still sometimes can hit you and emotionally when you tell it again. And so, I appreciate you taking the time to share such a challenging journey. But ultimately one that, you know, you’re using your platforms now to educate others. And that’s a really beautiful thing. So, thank you. 

Rosemary:  1:22:36

Yeah, well, thank you. And I want to, I mean, it took me years to sit down and write it down. And writing it out did feel like I got it out. It was hugely cathartic. And, yeah, thank you so much for having me. I really, really appreciate and I really appreciate everything you do. So, thank you for your work and your platform.

And like, I mean, I just, like you and I, again, are similar and connections in life. And I just think it’s beautiful the way that you can connect with people. So, thank you so much. 

Cheryl:  1:23:01

Yeah, I’m really glad that, you know, just for people listening like she contacted me out of the blue on on Instagram. So, you never, you know, if you want to share your story. I do now have a like application form that I send people sometimes if I don’t already know them. In your case, I you sent me your blog post and I read that I’m like, oh, my gosh, it’d be perfect. But it’s an application form.

Because unfortunately, I do get people who want to share their story, it turns out that they’re just trying to sell like a supplement or something which I don’t promote any supplements because it’s just way outside of my scope and, frankly, in my interest area.

So, you know, I want to, I need to vet people who come on the podcast, but it’s a Google Doc. And if you can email me at info at myarthritislife.net. I’ll send you the little Google Doc if you want to share your story, you can apply this rigorous application which is me reading what you said.

But anyway, thank you again, Rosemary. I hope I know people are going to have lots of positive feedback on this episode. So, we will connect further later and I hope you have a good time with your little baby. And we’ll talk to you later. Thanks, bye!

Rosemary:  1:24:08

Thanks Cheryl, thank you so much. Bye-bye.

Add comment

Your email address will not be published. Required fields are marked *