Listen to the full episode:
Summary:
What happens when your diagnosis is unclear? On Episode 95 of the Arthritis Life Podcast, Kelly shares the long and winding road trialing medications and building her coping toolbox as she navigates an undetermined form of autoimmune arthritis. She shares what it’s like to work as a Speech-Language Pathologist while balancing her health needs, and reflects on the pros and cons of disclosing health information to coworkers.
With advocacy and education in mind, Kelly has also co-founded The International Foundation for Autoimmune and Autoinflammatory Arthritis and is the author of the blog As My Joints Turn: My Autoimmune Soap Opera. In this podcast, Cheryl and Kelly talk about the benefits of spending time with pets, along with the importance of prioritizing mental health, practicing mindfulness, and getting connected with a supportive community.
Vide of Conversation:
Episode at a glance:
- Diagnosis story: Kelly has learned to cope with a changing diagnosis under the umbrella of “autoimmune arthritis,” along with Grave’s Disease. She has tried a variety of treatments to manage symptoms and help determine the underlying diagnosis.
- Balancing Work and Chronic Illness: Kelly works as a Speech-Language Pathologist, and is also the co-founder of The International Foundation for Autoimmune and Autoinflammatory Arthritis and author of the blog As My Joints Turn: My Autoimmune Soap Opera. In the workplace, she navigates disclosing her health to her coworkers and being aware of accommodation options.
- A look inside Kelly’s Arthritis Toolbox: Practicing mindfulness, spending time with pets, getting support, and taking care of mental health.
- Advice for Newly Diagnosed Patients: You’ll be invited to a lot of arguments but don’t have to engage.
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:
Kelly Conway: I’m a patient advocate, a speech language pathologist, author, and pet parent. I have had an ever changing diagnosis journey, but have lived with autoimmune arthritis since the age of 14. I didn’t receive a formal diagnosis until age 32.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Speaker links
- Kelly’s blog – “As my Joints Turn: My Autoimmune Soap Opera”
- Kelly on Twitter: @lolabellaquin
- Cheryl’s Arthritis Life Pages:
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl:
I’m so happy to have my RA and Cavalier King Charles Spaniel friend, Kelly Conway, here today. Welcome!
Kelly:
Thank you, thank you.
Cheryl:
Yeah, I know, I’m so glad to finally get to finally meet you in-person at the rheumatology conference, and then now interact with you more deeply on the podcast. So, thank you so much for being here.
Kelly:
Thank you for having me. Really happy to be here.
Cheryl:
Yeah. And can you just to start off, give us a quick intro to you, and where you live, and what is your relationship to arthritis?
Kelly:
Okay. Well, I’m Kelly Conway. I am the co-founder of The International Foundation for Autoimmune and Autoinflammatory Arthritis. I’m also the author of the blog As My Joints Turn: My Autoimmune Soap Opera. I am from Philadelphia. Professionally, I’m a speech language pathologist. And my relationship with arthritis, I started having symptoms at 14. Tons of tests, nothing came back. At 19, they actually did surgery on my knee, found nothing and were very confused by it. So, I kind of grew up feeling like a hypochondriac.
In my early 20’s, had a big flare up. But again, nothing showed in my blood. And then, in my early 30’s — I think it was around 31, 32 — I had about a year of every single joint in my body swollen in pain, wearing braces, going from doctor to doctor, and finally got a diagnosis of Sjögren’s syndrome, which I really don’t think I have. And so, they started treating me. And so, my diagnosis has gone from rheumatoid arthritis to Sjögren’s to right now, I think they’re saying it’s ankylosing spondylitis or non-radiographic axial spondyloarthropathy. So, they’ve never been, you know, I wouldn’t say I’m a mystery patient. I think there’s a lot of people like me. But at this p
oint, I think they changed my diagnosis to sort of figure out a medication that will treat me. I also have a skin condition. So, they tried psoriatic arthritis for a while, but nothing improved with that. So, and I apologize if I cough, I’m just getting over pneumonia and COVID, so.
Cheryl:
I mean, well, and you know, it’s funny. My first reaction — I have like a million reactions, but one of my first reactions to saying that is like, wow, I am so in awe of how tough all of my autoimmune warrior friends are. I will be like, I don’t want to have to, I don’t want to cancel this podcast recording. So, I’m gonna push through this, you know, where I’m like, also, part of me is like, man, like, I sometimes I don’t want to reward people for like, pushing, you know what I’m saying? Like, I’m just reflecting out loud, but, or I don’t want people to think that you have to be inspirational all the time, or — you know what I’m saying?
Kelly:
Right. And honestly, I probably feel as inspirational as a rock. I’m so tired all the time. But yeah, it’s it’s hard. But I think finding other people was the saving grace for me, because my dog thinks she’s a cat. She’s blurred out there. But she — we have twin dogs. And you know, you posted a picture the other day. And I was like, when did I take that picture of Finny. And I realized it was Teddy. Yeah, I think finding people like me was very, maybe not exactly the same stories, but similar stories. And it was like this big ‘Aha!’ moment. And that’s when I got involved with Tiffany Westrich-Robertson. And we started, you know, first, it was a movement, then a foundation. And just because connecting with people was so important, and Dr. Google is a scary place to visit. And so, yeah, we just sort of — would you please stop. Thank you. She’s obnoxious right now. But I, yeah, I think finding people and I get very inspired by so many people. Like, I remember meeting you years ago in Boston, maybe right?
Cheryl:
Yep. That’s right, in 2019.
Kelly:
And when I found out you were an OT, I was so excited because I was this speech therapist there, like, oh, my gosh, that’s so awesome. And I got you involved with our World Autoimmune Arthritis Day because I knew what a lot of people don’t understand is that when you are in like rehab medicine, or OT, speech, PT, you don’t think of things. I look at a situation and I’m like, okay, how can I make this problem better? Most people don’t think of that. So, all the adaptive stuff that you do, it’s stuff that I’ve done from working with OT’s for so many years. So, I was so excited to meet you, because I’m like, oh, my gosh, this is something that we really need to have people think about, that there are ways to adapt and make life easier. And, you know, it’s not always ‘I can’t’. It’s ‘I can, but with some modifications’. Oh, I met you again at ACR in DC. And I remember, I didn’t realize it was you. And somebody said, “Did you meet Cheryl? She also has a Cavalier,” And then I looked, and was like, “Oh, like, you know her! Wait a minute.” So funny.
Cheryl:
I know. Well, and yeah, I, first of all, Tiffany did come on the podcast, and I will link to her episode in the comments, because both of you are — using that word inspiration — you’re both inspirations to me, what you’ve created with the IFAA, AiArthritis, is just, I mean, it’s such —
Kelly:
Truly, her ideas have always been amazing. And we’ve, you know, evolved into AiArthritis, and she had this dream, and she had this vision, and I’ve always been more of the backseat person and supporting and because I’m still working full time. But her vision is incredible what she’s built, and I’m just proud to be a part of it. I think we’ve, yeah, we’re really —
Cheryl:
It does take a team. That’s what I’m working on recently, is delegating more. And, you know, you can have, you need to have a visionary on the team, but you also need the people to execute and tie up loose ends and also just have a different perspective. So, I I love your guys’s team, you know, teamwork approach. But yeah, I actually, sorry, because we have so many similarities working in rehab fields and having the same dog, for some reason, I thought you had definitive, for lack of a better word, rheumatoid arthritis, but nothing is so clear cut typical, you know, the typical is to be atypical when it comes to these diseases.
Kelly:
Exactly. And a lot of times, because it’s so confusing to so many people, a lot of times I just say, “I have RA,” to general people. Who’s ever heard of non-radiographic axial spondyloarthropathy? Nobody has heard of that. And a lot of times when my doctor and I talk, like, I have the sausage fingers, and I have like the lower back pain, but then I also have like, you know, symmetrical joint pain. She’s like, you know, you have so many characteristics of different things. So, we really focused a lot on the spondyloarthropathy the last few years, and she often refers to it as autoimmune arthritis, which, you know, AiArthritis, when we were IFAA, that we were one of the first groups to really start using that term. And it just makes sense. I definitely have autoimmune issues. And it manifests in my arthritis. So, you know, day by day, it’s always an adventure.
Cheryl:
Well, and I just love the name of your blog ‘As My Joints Turn: My Autoimmune Soap Opera’, which is a play on ‘As the World Turns: The Americans Soap Opera’.
Kelly:
You’re probably a little too young to remember this, but Carol Burnett had a show and she used to have a skit on her show called ‘As My Stomach Turns’, which was a play on ‘As the World Turns’. And it’s just so overly dramatic, and my mom used to use that as like a joke like, “Oh, her life is a soap opera, I call it as my stomach turns.” And it just always stuck in my head. So, originally, my blog was like, oh, my life with, you know, arthritis; it was just something simple. And then, one day I was like, as my joints turn, that’s the name. So, I do, I love the name and I keep the domain because I do. I haven’t been writing as much. I’ve been focused on other writing lately, but I try and bring some humor and some realism. I’m not one to give advice and research topics. I just basically blog about my life and what it’s like living with the disease. Because sometimes I think people just need to know they’re not alone.
Cheryl:
You know what, I have come so full circle on that. Because I felt like initially, like, sharing my story was just wasn’t ‘enough’ quote, unquote. I was like, I want to share all my OT tips and hacks. And people still really respond to those right or like, help people understand, let’s say, for example, how fatigue works or what we know about how fatigue works, and autoimmune disease and what we don’t know and all these deep topics, but so often what people say that they respond to the most and something I’ve shared is like, you know, let’s say, they’re 23-years-old, they just got diagnosed. So, like I’m just, it’s nice to see that you like, you know, have a job and have a kid and have a dog, like just doing the normal, like, elevating the normal, everyday living and thriving you can do in your daily life is something that’s really valuable. And like you said earlier, knowing that you’re not alone in the soap opera elements of it. And I think even just, you know, we could spend the whole hour just talking about what it’s like to not have that definitive diagnosis to ground you. Because for me, having it, I was in the ‘mystery’ quote, unquote, accused of being a hypochondriac category until I wasn’t. Like, it was only a couple years, and those were horrible years. But when I was feeling really sick and didn’t know why, and went to all these different doctors, but then when I got that definitive diagnosis of RA, it was like, this is a textbook case, homerun case. Like, every single one of your numbers is off the charts. You have the subjective signs, you have the objective signs, you have a great aunt that has rheumatoid arthritis, like, so tiny bit of a family history, like would have been even more of a homerun if it was like a full family history. But you know, so there was no doubt ever since I got my diagnosis. And I think I’ve taken that for granted. Like in your case, I think it’s hard to — I mean, I’m just imagining, it’s hard to have that ambiguity.
Kelly:
And nobody wants a diagnosis, although you want a diagnosis. You know what I mean? And that’s so confusing. And actually, I’ve written about my diagnosis journey several times. Rick Phillips, who does RA Diabetes, he always used to do an RA blog week. And he included me even though I was always like, I don’t know what I have anymore. And I would write about diagnosis journey. And then, I’ve recently moved into writing books. I’m a big romance novel fan. And I’ve been writing books, and I decided I’ve never — years ago, I read a story. And the author wrote about her mother-in-law passed away from rheumatoid arthritis lung disease, so like, the fibrosis with lung disease. And I was like, thank you. Because my friend just lost her mother to that. And I was like, I’ve never seen anybody mention, you know, and I was like, you know, maybe people will read that and look it up and then learn something. So, I just decided I wanted to write stories that showed people going through their journey of diagnosis. And the one book I just finished, it is my story of diagnosis. It’s definitely not my life in the story, but that whole part. And I read it, and I gave it to some friends. And I’m like, “Is it too confusing? Is it —?” They’re like, “Well, it is kind of all over the place.” And I’m like, but that’s what it was. And I really didn’t want to change it because it was going from doctor to doctor. It was wanting a diagnosis, but not wanting a diagnosis. It was wanting answers, but hoping I could just change my diet and everything will be okay. And so, I kind of poured that in and it was hard. And I had to sit back and I haven’t reread it in a while. But it was hard putting it down on paper. And really — oh, my gosh, she’s resting her head on my shoulder. Yeah, it was hard going back to it. Because I’m, gosh, I’m like 20 years out already. And thinking about how hard that was and how I was made to feel crazy, and I was told, “It took you so long to get sick. It took you so long to make yourself this sick. It’s going to take you a long time to get better.” And I remember sitting in my car when — oh, yeah. Sitting in my car when that was said to me, and I literally was like, wait, I did this to myself.
Cheryl:
That’s wrong. I mean, obviously, you don’t need me to tell you that
Kelly:
And at the end, she said, “You need to get yourself some help.” And I was like, “Oh, I’m gonna get myself some help. And I’m gonna get myself a doctor who can help me and not blame me.” And I hung up the phone, I never went back to them again. But it was just, I have some of those memories that just stick out in my mind. I could forget why I walk into a room. But I’ll never forget so many pieces of those vignettes in my mind of trying to figure out what was wrong with me and how sad I was and how bitter I was. All my friends were having kids and getting married and I could barely — I walked out of a supermarket because I couldn’t lift my arm up to get a box of tampons off the shelf. And I was too embarrassed to ask for help. And then, I would get a message from my friends like, “Hey, do you want to do this this weekend?” And I’m like, “I can’t, I can’t,” and so it really, it was very painful. I didn’t write a lot about that but just all of those things just stick in your mind. So, when I, you know, 20 years later, people will say, “Oh, I bet you wish you just didn’t have this.” And I’m like, of course I do. But I have to look at all the things it did bring into my life. It brought me some friends that are, you know, very close friends. It got me opportunities to do things. And, you know, my mom will still say, “Don’t post that on Facebook.” And I’m like, Mom, I post —
Cheryl:
So will mine.
Kelly:
Mom, you gotta remember, I’m an advocate. Like, people expect me to post things. And I’m not, you know, and I know some people think I do it for attention. Especially, you know, family. They’re like, “Why are you posting that?” But, you know, I do it because it connects with people. And I was so desperate in the early days to connect with somebody who understood.
Cheryl:
It is, really. I truly believe it’s a trauma to be undiagnosed, or to particularly, to have to have doctors who don’t believe you or who accuse you of faking it. Because it’s one thing — and I replay this, I will replay this probably the rest of my life. You know, what I wish the doctors had said to me, and again, this was only two years I went through this, I mean, you’ve gone through two decades, but not to play like suffering Olympics, but I wish they had — it’s okay to say, a doctor to say to me, that it would have been okay for them to say, “We don’t know why you’re feeling so sick. Like, we understand that like, a year ago, you were the captain of college soccer team. Eating healthy, you exercise every day, you’re super muscular.” Like, I could literally run a mile and like five and a half minutes, like I was the picture of health. Nothing happened. I just started wasting away and then had one joint that hurt and the rest of my body just felt really off until the morning I woke up and all my joints hurt. And then, I got my diagnosis. But long story short, if they had just said, “We believe you,” like, there’s no, like, they would be like, “There’s no reason for this to happen. So, you must be making it up.” Whereas I’m like, I have no reason to make it up. Like see, I’m getting riled up like, so if they just said, “We don’t know why, but, and to be honest, like, I’ve reached the end of what I can do to help you in this moment. But I believe you,” and like, “Here’s some resources or come back if anything changes,” and like that would have been such a different conversation. That isn’t kind of like, “Well, I can’t figure it out. So, you must be faking.” Or, yeah, anyway, I’m just so sorry you’ve gone through that.
Kelly:
Well, when I finally did get a diagnosis, I went to this doctor, she was brilliant. She really helped me. I didn’t feel great. But I was so much better than what I was. I was no longer wearing braces. I didn’t limp. I did limp, but I didn’t limp every day, I was doing a lot better. And she ended up changing jobs and she sold her practice. But she ended up selling it to somebody at a different hospital. And even though it wasn’t that much further, I just didn’t want to do that. So, I went to, I found another rheumatologist in that hospital. And he literally looked at me, looked at my bloodwork and said, “There’s nothing wrong with you, I think you should come off all your medication.” And I was like, what? Because there’s nothing wrong with you. Then, like, why are all my joints swollen? “I don’t know.” Pain, and he refused to re-do my prescriptions, like even the Plaquenil he refused. I didn’t need it. So, I finally went to the doctor that my doctor sold the practice to and she sat with me for an hour and a half. And I told her what the other doctor said. And I was like, “Is this all in my head?” And she pulled out my file which was thick and she goes, this is not all in your head. And the person I trust more than anything is the person who she got the practice from. I mentored with her and I interned with her and she was my mentor. And she’s like, “You’re absolutely not.” She sat with me for an hour and a half. And I was like, this is my doctor. Yeah.
Cheryl:
Yeah. If you can get in — people who live in more like urban areas have more options. In the rural areas you might not have access to second opinions, but I really do advocate, if possible, or if you don’t feel satisfied with the care you’re getting or you feel like the person isn’t listening or you just have a complex case. Some people have just complex cases and that’s actually why a lot of people — I actually ask rheumatologists all the time, like, why did you choose rheumatology? I actually feel like it’s the hardest medical specialty. People think like brain surgery is the hardest. Well, at least you can look at it. Like, there’s the brain. Like, I’m doing surgery, here’s this vessel, it goes here. Whereas with rheumatology, it’s like so ephemeral, right? Like, they’re seeing conditions and no one really understands exactly how pain works and they fluctuate and they’re dynamic. And sometimes, like, why does Enbrel work for some people with RA and not others? And why did the JAK inhibitors work differently? You know, so, anyway, you have to have a high, I call it like an ambiguity tolerance, you know, just like they call it with kids, we work on frustration tolerance. I think with autoimmune, we have to work on our ambiguity tolerance of like, “I don’t know, it could be this, it could be that.”
Kelly:
Right. And my doctor has been really good. And, you know, will say, “Well, how can we make this better?” And I said to her at one point, I was at a point in my life where I was like, I don’t think it can get better, I don’t believe, because it hasn’t in so long. So, it’s, yeah, it’s a roller coaster. It’s definitely a roller coaster. And right now, I’m on medication that I feel fairly good. I’ve been failing on medication for almost two years, finding nothing that worked. And tons of steroids, tons of steroids. And I’ve gained so much weight and I feel horrible about myself. And I would try to walk. But when I would walk, I couldn’t work. Because I was in so much pain at work, so then everything kind of got thrown off. So, now I’m on a medication where I’m doing infusions, which is a hassle to go and get it done. But I’m doing it. And my body feels so much better. But I’m constantly sick. And it’s the trade off and I’m not like, I’m not like just a sinus infection. I’m like, oh, pneumonia. Now, I just got over a bout of COVID and then rebound COVID. And that’s not from, you know, obviously, it’s not from — I was exposed to that. And that’s how I got it. But I’ve just been so rundown, and so hard. Just every little day things, it’s just, even showering. Like, I’m like, I gotta go shower tonight. Okay. [Sighs] Like, it’s just, it takes so much energy to do everything and taking care of my elderly mom, you know, just even doing her laundry for her. It’s, I’m exhausted. And then, you know, God love her, she’ll say, “Oh, can you go do this for me?” And I want to get angry because I’m like, I really can’t do it. But I can’t say no to her. And then, you know, I’m struggling this week. But you know, it’s a balance. And sometimes it’s hard to find that balance.
Cheryl:
Absolutely. Yeah. And sometimes you just only have so much energy. But you know, I think it is such a tradeoff like, Okay, I want my joints to feel better. And I want that to control the overall inflammation. But is it worth exactly the increased infection risk, especially when you work with kids? And so, that brings me to my next topic, because people do, especially the young people getting diagnosed with, you know, autoimmune arthritis, often will be like, you know, how did you choose to be an occupational therapist? Or, you know, what are some career fields that are easier or harder to do? Did that factor into your decision? Or did you always know you wanted to be an SLP? Or tell us what you do, sorry. They can’t read my mind, people. Listen.
Kelly:
I’m a speech language pathologist. I fell into it. I never heard of it. As a kid, I went to Catholic school, so we didn’t really have therapies. I was in the school of communications, and I was trying to apply into the school of communications at my college, and they just didn’t have any more room. And they stopped taking applications my sophomore year. So, they said they were not taking any for another year, possibly two. And I was like, what do I do? So, I was talking to a friend of mine, and she said, “Oh, well, I take communication disorder.” So, I was looking at her classes. And I’m like, that sounds interesting. And I wanted communications, so communication disorders. And the funny thing is, I walked into my first classes, and there was my best friend from high school and her college roommate. So, the three of us are still SLP’s today. Two of my closest friends are speech language pathologists. And what I say too, I’m always — most of the, the people I work with, they have no interest in taking students but I always do take students. Because I think being a speech therapist, or an OT or PT, I think they’re the greatest jobs ever. Because you have so much flexibility. I could go virtual, I could work in a hospital, I can work in a school setting. I could do accent reduction, I can do all kinds of things. Granted, you have to become highly qualified in these things and know what you’re doing. Do I know what I’m doing and accent reduction? No, which is why I don’t do it. But I know at some point, exactly, I could if I looked into it. You could do feeding and swallowing therapy, which I do really enjoy. And it was kind of interesting when my dad needed speech therapy for swallowing. It was funny that I was telling him stuff. And of course, “Oh, who are you, a doctor?” And so, then speech therapists will work with him. I’m like, “Oh, that sounds so familiar. I wonder where I’ve heard them from before,” so like those little things. But I always say, I don’t know any OT, PT, or speech therapists that don’t like what they do. They don’t like the paperwork. They don’t like dealing with insurance and all that stuff. But they all love what they do. So, I think those three careers, I am just very passionate about trying to get kids to do them, to look into it. So, I recommend a lot of kids go in. And all the kids that want to be doctors, I’m like, become a rheumatologist. So, it gets brought up a lot and like, you should go into rheumatology.
Cheryl:
Yeah, I do the same. I try to encourage people to have I know that they’re in med school. But yeah, can you just briefly tell the listeners, you know, because I think a lot of people hear speech language pathology. And there’s this old idea from when I was young that, “Oh, speech therapy is just helping people articulate better,” which I did go to speech for articulation as a child because I was ‘Cheryl Crow’ for a long time. I really struggle with R and L.
Kelly:
Well, R is why I dye my hair because it stresses me out. Yeah. So, I, again, I didn’t know about that. I didn’t remember kids going — and no kids did go to speech therapy, because I remember kids who said R’s and L’s incorrectly. That’s one part of my job. I also work with kids who have expressive and receptive language disorders. So, how they are able to express themselves, how they’re able to comprehend spoken language. Sometimes, kids have disorders in terms of fluency or stuttering. There’s voice issues. Not always my specialty with voice issues, but I have worked with people with voice issues with Parkinson’s. But my area of specialty, I’ve really focused the past, gosh, 32 years on autism and augmentative and alternative communication. So, my area of specialty is really people who either need help augmenting their speech, or we need to give them an alternative means of communication, such as using a device that will speak for them. That’s what I — that’s really my passion and what I specialize in. And I try and I used to do more volunteering with, like, ALS patients, and helping set them up and troubleshoot when they couldn’t get in touch with people. That’s something I really enjoy. And I love when my kids will come in, and they’ll give me some new and exciting information on their device. And they’re so eager to tell me something, and their parents will say, “Oh, you know, my daughter texted me the other day using her device.” And I’m like, I still have kids that I taught how to text years ago, who still text me like 50 times a day. And that’s fine. Nobody’s supposed to have my number, but you know what, it’s in there. It’s in their program, and they have to text somebody. So, they’re going to text me and, you know, they want to remind me whenever The Voice is on or Dancing with the Stars. And so, it’s all about communication. So, speech is, people often look at OT and PT, and they’re like, you can see a physical, you can’t always see a speech issue. So, it’s about learning how to become a better communicator. And probably the most work I do is in pragmatic language and social skills. And I work with secondary students, so middle and high school. And it’s just really fun helping them prep for job interviews and how to engage with peers. I’ve even, you know, how are you going to ask somebody out on a date? What are you going to do if you really want to ask them? And it’s those little things. If you go to a dance, how do you make small talk? So, I have a lot of fun with my job. I think that’s why I’m still doing it. I just, I do, I love the people I work with, and I love the kids I work with.
Cheryl:
And yeah, I worked in both a elementary and high school and a lot of times, people who go into pediatrics, they really want to work with the little kids but, you know, middle school and high school are such fascinating times, you know, to be there for a child and helping with those life skills. Like, we had a program through the district I worked for that also had like, it was called like ‘Life skills’ and they would do 18- to 21-year-olds with disabilities would still qualify for services through the school. And it’s just really helping people get a job at Starbucks or get job experience. It’s really, yeah, it’s a great area if you want to really be able to help someone else improve their quality of life. But it can be hard when your own quality of life has been negatively affected by your own chronic illness, right. So, can you share a little bit how you’ve coped on the job with — or I’m sure it’s like, ups and downs, you know, but.
Kelly:
Well, like, the invisible illness. When I first got sick, I was in grad school. So, I was originally a special education teacher and I went back to school. So, when I was in grad school, that’s when I got really sick. And so, I think that going to school and becoming a speech therapist kept me sane. And I remember my one professor said, “Well, it’s interesting, you know, you don’t have to walk well to be able to be a speech therapist.” And I’m like, you don’t but when you work in a school, and you have to go get the kids…
Cheryl:
You do a lot of walking in a school. Yeah.
Kelly:
Oh, my high school is ginormous. So, I eventually, my original start of my career was early intervention. I did three to five, and then I did zero to three, which was really interesting. You are doing feeding and working with little kids and their families. And then, 10 years ago, for my health, I was like, I can’t keep working with kindergarteners, I just can’t. They use me as a tissue and that’s the part, but I get too sick. So, I ended up switching to secondary and I would say my first two or three years, my immune system was a little bit better and, you know, slowly that’s still deteriorated. So, getting sick is my biggest, my biggest issue with everything, because when I’m sick, everything just gets thrown off. So.
Cheryl:
Right, and it’s interesting. I remember asking my rheumatologist years ago when I first became an OT, and I was looking into different settings. I always thought I would want pediatrics and/or school-based or outpatient. But I also was open to other settings. I actually really liked my skilled nursing internship. But it was a pretty swanky skilled nursing placement. They told me they’re like, don’t think that everywhere is like this. It was really nice. But anyway, and my doctor said, you know, you would think that everyone who’s on biologics, which are kind of medicine for rheumatoid arthritis, you’d think that they would all be getting really sick all the time. She’s like, but I have people who are flight attendants and kindergarten teachers and stuff who don’t get sick all the time. So, it’s still again that ambiguity of like, some people are getting sick all the time. Some aren’t. Why is that?
Kelly:
You see, I was the kid growing up who always got sick, and that every year ended up in the hospital I think until I was like 9 or 10. Like, dehydrated, I would get really sick. I’d get horrible infections, like sinus infections and bronchitis. And so, I’ve just always been like this. And the older I get, the more I feel it wearing me down like this. In September, I had pneumonia which is interesting. It’s the second time I’ve had pneumonia. Both times I thought I was having an RA flare. I did get all the joint pain, the feeling lousy. Twice I’ve done this. It wasn’t until I came home and I had 104 fever. I came home, I lay down. I woke up. I’m like, oh, wait, no, something’s really wrong. But yeah, that’s how lousy I had become used to feeling. So, then I got over that and then I got hit with COVID and then rebound COVID. COVID was a big topic for me. I don’t know if you know, I lost my father.
Cheryl:
I’m so sorry.
Kelly:
He had fallen. Prior to vaccines in 2020, he had fallen, broke a hip. We found out there was COVID in his nursing home where it wasn’t — it was a rehab hospital. But it’s set up like a nursing home. And we found out there was COVID in the building and we tried to get him out but we weren’t able to. Nobody would take him. So, we’re talking about bringing him home. And I got the phone call that he ended up rushed to the hospital and it was, you know, he ended up with sepsis and the COVID pneumonia and everything. And people still will say, “Oh, well did he have pre-existing conditions?” Yeah, but he didn’t have COVID when he went to the hospital and that is what caused everything to spiral down. And three weeks after he died, my uncle, same thing, fell in a nursing home doing rehab because we couldn’t get him into a rehab hospital. And he contracted it. So, it was just extremely difficult. And, again, being immunocompromised, very difficult. My mother with COPD, I made the cover of the newspaper because I drove like — I forget, like a 300 miles round trip just to get her the COVID vaccine. Because I was adamant.
And my mother did, she fell this past summer and she was in a rehab, and then she had to go into a temporary nursing home. And she did get COVID, and she did get pneumonia. And guess what, she’s fine. And if you would have asked me back then, I would have thought my father would have survived COVID easier than my mom because of her breathing. So, yeah, I, you know, I stress that the vaccines worked for my family. And even though, you know, I ended up getting COVID two years and nine months into the pandemic, it was annoying, because I don’t get colds. I get sick; I get an infection. I don’t get a cold, and I felt like I had a cold. And I’m like, this is what I’ve been saying to doctors for years, I don’t get colds. And I was literally sitting there. And I’m like, this is not something I’m used to feeling. So, it was a rotten cold. But it was definitely a learning experience. And I didn’t get as sick. But the fatigue is what’s killing me. But COVID was something I wrote a lot about in terms of how it impacted my life, why I was making the choices I needed to make, why I was being super cautious. And I think people did connect with it. People disagreed with me, and that’s their right. I’m not telling you how to live your life. I’m just saying how I’m living mine.
Cheryl:
Yeah, and I think it’s funny, because this hasn’t come up to too much on on the podcast so far. But yeah, I’m curious. Because it obviously seems like you’ve you were a really strong advocate for your mom getting the best care possible and masking, I’m assuming, and getting the vaccines. And how has it been? Like, you do seem to be somebody who has good maybe like boundaries, like I’m like a people pleaser. So, I still struggle sometimes with being like, what are they going to think about me, you know? Like, worrying about what others think.
Kelly:
You’ll get that. And, you know, I had depression prior to all of this. So, in 2020, I lost my dog, Georgia Grace, who again was the ultimate goony dog. I lost her in the very two weeks into the pandemic and my life kind of was crushed. But somebody who bought the book that I wrote about Georgia, got me my puppy, my Finni. So, she brought me joy. And I think it was meant to be because I don’t think I could have handled Georgia’s care, which was 17 pills a day and two shots of insulin, and working five jobs. I don’t think I could have maintained that with also taking care of my mom, losing my dad, losing my uncle. And then, I lost a cousin Christmas Eve as well. So, it was like kind of like a huge thing. So, I think the puppy came into my life at the right time. But I think — I don’t think I was very good at communicating the level of depression I was going through. And I really did cut people off. And I’ve said to some people, “I’m really sorry.” Some people were like, “We get it, it’s okay.” And other people have pushed me away. And there’s still some people that I’m like, I need to repair those bridges. But I have no energy to do it. But I sort of, you know, my closest friends really did get it. Other people kind of just let me go. And that’s fine. I was being a crappy friend. At work, I really held my boundaries.
Cheryl:
Oh, have you — I’m sorry. I meant to ask this earlier because people ask me all the time. Should I disclose it? Because I can’t tell you whether you should or shouldn’t disclose your disability at all in the workplace. But do they know?
Kelly:
I don’t have anything official with accommodations. My coworkers know because I couldn’t hide the limping. I couldn’t hide that. You know, I can’t type anymore today or if I know there’re days I couldn’t get shoes on so I’d come in with bedroom slippers. I’m very open about that. And most of them are friends with me on Facebook. So, they’ve seen my blog. I haven’t needed accommodations other than handicap parking. And I will — my dog is snoring, I apologize if you can hear that.
Cheryl:
I can’t even hear it.
Kelly:
She’s not as loud as my previous dog. But she’s pretty loud. Yeah, handicap parking is something. And there’s been issues recently in one of the buildings and I just basically, I went pretty hard and said, you know, this is an ADA violation and I really, you know, you can’t expect us to show up early before you block off a lane, if every able-bodied person doesn’t have to experience the same thing. I think it makes me a little bit more compassionate towards my kids when they’re really going through something hard. But I’ve often said to them, you know, you’re at a moment where do you give up trying to make this better? Or do you figure out how to manage it better? Or do you try and fix it? So, I think I do have with some of my kids, I’m able to say, “Listen, I get how hard this is, I get how exhausting it is,” especially my kids who have cerebral palsy or sort of physical issues where it’s hard, “But you have to keep moving. So, how are you going to be the best you can be?” And like I’ve said, you know, any sort of diagnosis you get, whether it’s you can’t say your R’s, or you get diagnosed with an incurable disease, when it happens to you, it’s a big deal. You look at the scheme of things and be like, “Oh, well, one is not as serious as the other.” But when it happens to you — and I don’t know if anybody’s ever said this to you — when I was diagnosed with Graves’ disease, I remember a very dear friend of mine said to me, “Oh, well, thyroid, that’s not a big deal.” And at the time, like my body was so out of control with my hormones. I was so skinny, I was a size two, and those clothes were big on me. My body was like a rubber band, and I would get angry, and just everything was going on. And I did not feel like myself. And when that person said that to me, I was like, how dare you? But I didn’t say anything. Because again, I’m a people pleaser. And then, I felt guilty. I’m like, well, she’s right. I don’t have cancer. And then, you’re like, no. When it happens to you, it’s a big deal. And nobody should, you know, minimize something you’re going through. It just, it’s not the end of the world. It’s a different way of living in the world. And it’s hard to find that balance. And that’s a balance that changes as you get older. Like, you went from being somebody living with RA to being a mom with RA. I haven’t had that experience. But now I’m looking at how am I going to be a retired person with RA and afford my medications and do I want to live in a northern state, because I live in Philadelphia, do I want to stay here where there’s snow? No, I want to move somewhere warmer because the cold is painful.
Cheryl:
Move to Arizona with Wendy Hawk — do you know Wendy Hawkins?
Kelly:
No, I don’t.
Cheryl:
She runs a group.
Kelly:
Arizona’s in my list because my hair is fabulous in Arizona, the humidity is good. But there’s, I’m sort of at a transition place right now where I’m trying to plan for the transition. I just don’t know what the right thing to do is. So, I’m trying different things and hopefully I will, you know, my ultimate life, I would live on a big ranch with lots of rescue animals and a billion dollars where we don’t have to worry about bills.
Cheryl:
Oh, yeah. Personal chef, yeah. Actually, in our Rheum to THRIVE group, there’s this recurring theme of we call it like Rheum Island, like Rheumatoid Island where like, we invite people to say, “Okay, this doctor has invaded the island,” or, “They’re not invited.” It’s like this island where everything that we want and need is there, right. Like, all the people understand you and give the benefit of the doubt, the doctors listen, you have every, you know, every chair is comfortable. And you have heating pads and cooling pads at the snap of a finger. And yeah. But sorry, I didn’t mean — I just went on a tangent from that, but about retirement.
Kelly:
So important. And I my car was just demolished in front of my home and so I had to get a rental and the only rental I could get on the holiday weekend was a Jeep Wrangler, which is an awesome car. They’re awesome. They’re very cool. I’m not an off roader. So, I wasn’t going to take the doors off and it’s freezing. But climbing in and out of it, my hip is killing me. And the seats. It’s a great car. It is a fantastic car. But I was like, you know what, I don’t want to keep climbing in and out of this. It’s too hard for me. So, I switched it out and I got a Chevy. I think it’s an Equinox right now. And I sat in it and I’m like, oh, my gosh, this is so much more comfortable. Like, I’m not in pain when I get in this. And sometimes I — so I did… Why am I having brain fog since COVID so badly. Meditation, meaningful meditation, mindfulness, mindfulness. And I took a very amazing course through the Thomas Jefferson University Hospital has a program and I’ve learned to kind of live with pain where I know I have it. But I can focus enough that I kind of keep it at my fingertips. If it goes away, obviously, it comes rushing back. But I think that’s how I get through most of it, because I keep everything here, right. I acknowledge that it’s there. But I focus on what I need to do as much as I can. And it works, for the most part. It’s not a cure, but it definitely is a good strong tool in my toolbox. But I think I’m so used to being in pain that when anything else gets added into it, like, I broke my foot or I cut something, I can’t deal with that extra pain. It’s like a sensory overload for me, because my body is not used to that level of pain on top of the pain that I’m used to. So, somebody said, one of the doctors was like, “You must have a low level of pain threshold.” I’m like, yeah, no, I don’t. But yeah, it’s like all those little things. And like I said from the beginning, having somebody who gets it and understands, “Why would you switch out that car?” because my hip was killing me. Like, I’m not an old woman. But oh, my gosh, that hip is killing me from just pulling myself into it.
Cheryl:
Oh, yeah. All of the little activities of daily living like getting in and out of a car, brushing your hair, so many things.
Kelly:
I’m in a ponytail because today, there was just no way I could do my hair.
Cheryl:
For years, I never blew my hair dry because it was just too much. I mean, also, I just was not interested in it as well. But yeah, I mean, it’s work. It’s work for your hands. It’s energetic, you know, expenditure.
Kelly:
Rarely ever blow my hair dry. And so, I always get ready at night. I shower at night.
Cheryl:
Okay, that’s a good life tip.
Kelly:
Because I start working at 7:20 some days. I cannot, and it takes me a long time to fall asleep at night, I can’t get up at 4:30, 5 o’clock in the morning to shower and get ready; I can’t do that. So, I shower the night before. I let my hair air dry. I braid it. And then, I get up the morning and if it’s a good morning, I curl it. That’s why my hair is long now. So, I can just put it up. And it is what it is. I wear a lot of zippers. I don’t wear a lot of buttons. I just can’t, you know. Shoes are primarily mules. Because to always tie shoes or handle the swelling that my feet go through during the day, so I have to be able to take them on and off. Yeah, so it really does, like, it impacts so much of my day. But now it’s just habit.
Cheryl:
Yep. Yeah, I mean, you kind of, you know, one thing I recommend for people is like kind of become a detective in your own life. Like, what are all the little small areas where you could swap something easier, like slip on shoes versus shoes that you tie, you know, a different kind of wide grip for a pencil or a different way of holding a pencil; little things like that. Yeah, that could definitely give you some helpful life hacks. But I want to make sure that I give some time to talking about pets and the role because you mentioned mindfulness tools and then kind of a refocusing strategy where if you’re in pain, kind of refocusing on what’s in your life. But what has been the role of your animals in your life and coping and the joy they bring? Just whatever you want to say.
Kelly:
Well, originally, I always had dogs growing up. And once I bought my house. I used to — the Jersey Shore, this is very popular TV show — if you live in Philadelphia, the weekends are spent down the shore. We don’t say ‘At the beach’, we say ‘Go down the shore’. And that was my lifestyle. So, every weekend I was down the shore in the summer. I travelled a lot, so I didn’t really have a lifestyle that I thought I could have a dog. Once I bought my house, I was around 31, 32. Again, I was still travelling a lot and I had a dog that lived with my parents. And I didn’t feel right getting a dog while she was still alive because she was mine. And I gave my mom and dad because I couldn’t have her with me. So, I have cats who that I adored. I never had cats. My mom never liked cats. She now loves cats. But I had cats and I loved them. And then, for my 40th birthday, I was like I want my dream dog and I made a mistake, because I didn’t research the health. I read it but I mean, I had a dog. She was epileptic diabetic. You know, I thought I knew what we were doing, or what I was going to do, it was fine. And then, I got Georgia Grace who’s a Cavalier King Charles Spaniel like your Teddy and my Finny Roux. And Georgia was bred by a backyard breeder who loved dogs, but again, didn’t do the heart testing, didn’t do the neurological testing. And Georgia was a lemon. Which is why I wrote the book ‘Making lemonade with Georgia Grace’. So, at age two, the dog that I got to get me, you know, I researched like a dog that didn’t need a lot of grooming, I could handle the brushing. [Coughs] Excuse me. Didn’t need a ton of exercise. could handle the fact that I had a small yard. So, I got a breed that I felt would fit my lifestyle. Plus, I was a big fan of Sex in the City and Elizabeth Taylor was the dog on there. I had a co-worker who had two, so that was the that was the breed that I wanted.
And she was the best thing that ever happened to me. But at age two, she was diagnosed with syringomyelia which is very painful disorder, and living in pain. I went into panic mode. I can’t let my dog suffer. I can’t let my dog — so I pursued avenues that like most people wouldn’t. You know, she was the first dog in the state of Pennsylvania taking cannabis. My dog had acupuncture. And every year she kept getting more and more. So, you know, she had syringomyelia which is like a Chiari malformation. So, part of her skull was pressing on her brain, and she was leaking spinal cord fluid. So, we did the acupuncture and I was told she wouldn’t live past three by multiple people, because I wouldn’t be able to control her level of pain. So, she was on. By the time she died, she lived till — she died right before her 11th birthday. She was on 17 pills a day. Two shots of insulin. Her medical care each month was more than my mortgage. And I worked five jobs just to give her quality of life. I went overboard, but I think everything I did, I was able to manage her pain. And I think it got to the point where I could just look at her and be like, okay, there’s something not right. But I think she was my partner in sort of the whole journey. If I hurt, she laid with me if I if I felt good, she would go with me. And she was like my sounding board of, you know, okay, I might need to take it easy today. Like, she can’t do this. So, let’s have it be an easy day. And I think it was my part, my neurotic desire to make sure her life was as pain free as possible. And also, my knowledge of how to manage chronic illness kept her going.
And it’s funny because again, Finny Roux was gifted to me, and she’s a blessing. And having a healthy dog is so different. And I knew I couldn’t meet her needs. So, she goes to doggy day care, and she gets a lot more, she’s much more active. And I really try and make sure she’s, you know, she’s a pandemic puppy. So, I’m really trying to like catch her up on all the socializing and getting out and doing something. I think at some point, she’s gonna make a good therapy dog. Georgia was a fantastic therapy dog. I have to get this one to this point, because again, she was pretty much with me only. But I think having a pet that you can manage — I love grey nose or blue nose Pitbulls? I think they’re the most beautiful dogs. Could I manage a Pitbull? No, I can’t. I couldn’t give them — do I love Huskies? Absolutely. I love them all. But I can’t physically take care of them. Sorry, my phone was going off here. Sorry about that. So, again, I got pets that I can manage. I got pets that I knew that size wise, I could pick her up.
Cheryl:
That’s huge. I obsessively, you know, researched before getting Teddy. And that was the thing that came up over and over again. Like, the number one mistake to new pet owners make is choosing a dog based on how cute it is and not based on how it fits your lifestyle and your abilities. Like, I actually wanted to do a rescue. But I just, you know, as a first-time dog parent, never had a dog before, had a four-year-old at the time and two cats. I’m like, I just don’t — I don’t know, if I have the ability to train, you know, a rescue dog with a past that’s unknown in a way that is safe, you know, for my family, even if it is one of these easy temperament dogs like a Cavalier. Any dog has the ability to —
Kelly:
Yeah, I do a lot with Cavalier rescue in terms of donations and we raise money for various organizations that really rehabilitate and rescue mill, mill daddies. And I never had a purebred. I rescued — we had mutts. Now they’re called designer dogs, but I never had a purebred dog. Every dog came from the pound; every dog was a rescue. And now when I know, you know, I work full-time. I am not home during the day. I am not rescuing a dog that I can’t dedicate what they need. Getting a puppy. She adapted to my schedule. So, she’s able to be left at home when I work. She’s not alone. She has two cats. She loves it. I have neighbors that can get to her if I need, you know. But yeah, rescue is a big passion of mine. But I know my lifestyle doesn’t lend to it. And I know a lot of people have made the mistake with the best intentions to rescue a dog and the dog just did not fit their lifestyle, or the dog couldn’t handle being left alone. The dog couldn’t handle getting in the car to go to grandma’s house, like those little things. Right now, my dog is snoring so loud on my back. She’s a cutie.
Cheryl:
Yeah, no, and I think there’s, I think you pointed out something I think is super important for people, maybe who do want to support, you know, animal rescues. Like, maybe make a donation to the Humane Society, you know, in honor about all the work that they’re doing. And there’s other, you know, a lot of times non-profits they need donations, you know, so, um, you can do it, you can help in other ways.
Kelly:
Exactly. And so, Georgia Grace was not a rescue, but she was often featured on rescue websites. And when she died, I heard from 26 countries because again, I wrote a book about her. So, people all around the world knew about Georgia Grace, and I didn’t realize that. Like, I used to joke, I’m like, “Yeah, I’m her momager.” And then, when she died, like, I got cards from around the world, I got messages, I still get messages about her. But, we raised money, and we were able — it was an Arizona rescue. We were able to buy off their Amazon wishlist.
Cheryl:
That’s amazing.
Kelly:
It meant so much to me, because people really, towards the end, twice, I had to have people help me, because I couldn’t — her hospital bills were outrageous. And she wasn’t ready to leave me. But already, people helped me. So, I felt so good that we were able to help dogs that really needed it. Because again, Georgia was not a rescue, but I feel like in a way, not many people would have kept her. And there’s one other person who had a dog with similar issues. And she’s actually from Washington, his name was Stewie. Stewie the Cavalier. And he had a lot of stuff too, wasn’t supposed to live. And, you know, his mom and I talked, and we’re like, it was so hard and she had medical issues. So, you would think it would be so much harder. [Coughs] I’m sorry. But yeah. So, you know, you would think having a dog with special needs would be so much more taxing. And I do think it was, but also, it kept me focused. And I think I was the right parent for the right dog.
Cheryl:
Yeah, yeah. Well, I mean, I hope everyone checks out your blog, and also your books, because they’re really, they’re wonderful. And, you know, I know that you haven’t been feeling well recently. And so, I appreciate you taking an hour to chat. But is there anything else you wanted to say before we wrap up?
Kelly:
No, not really. If they check out my blog, they’ll see I did start — Excuse me. Again, I’m like, okay. [Coughs] I did start writing romance novels, which is not for everybody’s cup of tea, but I wanted to focus on, they’re called Chronic Romance, and it’s about people, diagnoses. So, one is about someone with thyroid cancer. I didn’t have thyroid cancer, but I did have Graves’ disease. And so, I kind of went through the experience, and there’s drama and there’s romance and whatever. But and then the second one is called Dragonfly, and that’s really about a person going through a diagnosis of rheumatoid arthritis and sort of what that was like. And just showing that you can have a career and you can have a family and you can have a life. And again, it’s not the end of the world, it’s a different way of living in the world. And it’s finding that balance is really key. So, if I can help somebody along the wa, find that balance, or just let them know that they’re not the only person out there looking for that balance, then the limp that I do is worth it. That’s all. But I think we have an amazing network of people that we both know that I learned so much from everybody. I learned from you, I learned from Tiffany, from Chronic Eileen, from Charis Hill, and all these people that are just — Debbie Constantine — like, all these people who are just amazing and just brilliant in how they can, you know, I’ll say, “Hey, my doctor said this, and I’m just not sure.” And within five seconds, I have support.
Cheryl:
Yeah. Until we, yeah, you really are not alone. And that’s, I think, whenever, you know, I go on this, soapbox all the time about the power of social media for the chronic illness community. And I know that there’s downsides of social media, but having access to people, I didn’t know a single person, my age who had even a similar condition when I was diagnosed at age 21, we figured out — I kept saying 20, because it was like, the month — anyway, it’s a month before my birthday. But so, you know, the fact that now people can get diagnosed, and in the waiting room after their appointment, they could just go, you know, not Google, but like, go on Instagram, like find people and just see what life could look like is really reassuring, I think, to people.
Kelly:
And, you know, social media can be a terrible place. And I think we were talking earlier about Effie Koliopoulos’ — yeah. And I did write. And I forgot what I wrote. But I did have the title. And it was called ‘A Stranger Thing’. Because people who knew me didn’t know how to help me. While strangers on the internet that I connected with, they really did help me. And there are pitfalls. But you can get invited to a lot of arguments, but you don’t have to accept that invitation. So, there are — and I don’t have to engage with them if I don’t want to and it’s not me being elitist, or me not valuing who they are. It’s just I don’t have to, you know, engage with them. And I’ve really set very strong boundaries. Because I get people who love Cavaliers who try and friend me and people who, you know, have arthritis that try and friend me. And I’m like, if I don’t really know you, I don’t have — we don’t need to be friends. We can follow a social media page and just be friends that way. So, I think, yeah, it’s definitely connection is important.
Cheryl:
Yeah, yeah. And I think boundaries is something that I’m definitely still working on. So, I appreciate anyone modeling healthy boundaries, because I would just say I’m very inconsistent. Sometimes I’m in the optimistic mood. And I’m like, sure, I’m gonna invite everyone into my life and then I’ll have to realize, no, like, there are, you know, there are some things that are meant to be.
Kelly:
Yeah. And trust me, menopause gives you more bravery than you ever expected to have.
Cheryl:
I know just getting older has, yeah.
Kelly:
Yeah, I just don’t care. And not that I don’t. It’s not that I don’t care with a lack of respect. It’s that, you know, you can have all kinds of opinions, and that is fine. But I found through my blog, I have a core group of people who have followed me for years. I don’t know why they still stick with me, but they do. Finni Roux would like to say hello. Oh, she’s exhausted from sleeping all day.
Cheryl:
Oh, yeah. That’s how mine is. Yeah.
Kelly:
It’s exhausting, my poor baby. But yeah, and you know what’s really funny, the funniest part of the whole thing, I’m in a group that does a lot with Cavalier rescue. And there was a woman who followed my blog. I didn’t realize she didn’t know I was As My Joints Turn.
Cheryl:
Oh, my gosh, that is so, yeah. When people put the dots together, like, “You’re that person?!” Yeah.
Kelly:
Yeah. I posted a picture of myself in Georgia. And I get this message. She goes, “Oh, my. How did I not know you were her? I had no idea.” Yeah. She was a big part of my blog back in the day because a lot of stuff that we did was very similar and she was just so cute. But yeah, people didn’t know. So, I have, I probably have two dozen people who followed me originally for my blog, but also had Cavaliers.
Cheryl:
Yeah, yeah. Yeah.
Kelly:
And yeah, it’s so funny because I was like, oh, I thought you knew that’s who I was.
Cheryl:
It’s such a small world. It truly, truly is. And I think chronic illness is one of the things that it does transcend all, you know, it transcends — it can happen to anyone, regardless of age, religion, favorite dog breed; it can happen to anyone. So, yeah, it’s making those connections online has been just, yeah, for me, being an extrovert, it’s been a lifeline, especially during the pandemic when we were physically isolated.
Kelly:
Yeah. And Zoom, I got sick of it, because it was really my entire life. It was work all day long.
Cheryl:
Yeah, yeah, that’s true.
Kelly:
But as you know, doing podcasts and, you know, I mean, I think all of us were in a panic in that beginning. I mean, we didn’t think we would survive. And yeah, I originally didn’t want to take the vaccine. I’m like, no way am I taking the vaccine. And then, it was actually talking to rheumatologists from all over the world, oh, yeah, I’m gonna take the vaccine. I get it. And again, it’s a personal choice. And, you know, I have very strong feelings about everything that happened because I had such traumatic loss. But I think, you know, it’s a balancing act. I have to, you know, with having pneumonia and COVID and this car accident, I really, just driving home today, I’m like, I have to take care of my mental health. I have to — you can appoint somebody with little things that like, it’s one more thing to do. But I know I have to do it. So, yeah, and live and learn. And boundaries are something I’ve become better at as I’ve gotten older. And it’s got to sometimes be like, yeah, no, I don’t need, I don’t like drama. And I hate when I’m invited to it. So, that’s why I don’t have to join. I could say no to your drama. And it’s okay.
Cheryl:
Yeah, I need to repeat that to myself. Well, thank you so much. I want to give you some time to rest because you’ve been through a lot. Your voice is I know getting a little tired. But thank you so much. And I will share all of your links to your social media and your — so if people want to, you know, see what you’ve written in your blog, they can do that. So, thank you again.
Kelly:
Thank you, Cheryl. It’s been a pleasure.
Cheryl:
I’m so glad to be able to talk longer and we should do this again sometime! Bye-bye for now.
Kelly:
All right, bye-bye.
