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Podcast

Finding Joy Amidst the Flare-Ups: Riley’s Journey with Multiple Conditions

15 hours ago
82 min read
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Summary:

On this episode, Cheryl interviews Riley, who shares her journey living with multiple rheumatic diseases and autoimmune conditions. These include seronegative rheumatoid arthritis, lupus, dermatomyositis, Sjogren’s disease, osteoarthritis, peripheral neuropathy and interstitial lung disease. 

Riley details her complex and often delayed diagnostic journey, the challenges of navigating the healthcare system, and which treatments have worked best for her.  She also shares how she navigates daily life while living almost exclusively at home due to limited mobility and energy.

Cheryl and Riley also discuss the adaptations and strategies Riley uses to manage her conditions and maintain her quality of life, including some special tips for RV living. Riley offers insights into finding peace in the moment, the importance of advocacy, and the reality of thriving in survival mode.  

Riley challenges the traditional idea of what it means to thrive, redefining it as being present for micro-moments of connection, joy, or peace . Her story highlights both the physical toll of chronic illness and the emotional strength required to navigate a complex and often dismissive healthcare system.

Episode at a glance:

  • Riley’s Diagnosis Journey:  Riley shares her journey with multiple autoimmune conditions, including lupus, rheumatoid arthritis, and Sjögren’s syndrome.
  • Treatment Trials and Tribulations: Riley opens up about experiences of medical gaslighting and the emotional toll of being dismissed by providers.
  • The Importance of Advocacy and Self-Care: Riley and Cheryl discuss the power of symptom tracking as a tool for validation and self-advocacy in healthcare.
  • Daily Life Adaptations when you Don’t Leave Home Often: Riley shares her daily tools and strategies that work for her and her family.
  • Finding Micro-Moments of Joy and Redefining Thriving: Riley redefines what it means to thrive—finding value in micro-moments of connection, joy, or stillness.

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:

Riley Harris 

Riley is a writer & abstract artist with Seronegative RA, Lupus, Sjogrens, Dermatomyositis, & RA-ILD/PF. She participated in this year’s Pulmonary Fibrosis Foundation Hill Day event with some state representatives and is excited to get more involved in patient advocacy through sharing her story.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty 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:

Full Episode Transcript:

Cheryl Crow: All right. I’m so excited today to have Riley Harris to share her story with multiple rheumatic diseases and autoimmune conditions. So, welcome, Riley. Can you let the audience know where you live and what is your relationship to arthritis? 

Riley Harris: So I am in rural Oklahoma. As far as my relationship to arthritis, that’s kind of a complex one, as you know.

I actually started out with seronegative, rheumatoid arthritis. I also have inflammatory arthritis from lupus and Sjogren’s disease osteoarthritis. So I know that one’s like off to the side of some stuff and some degenerative stuff as well. So yeah, that’s, that’s most of it, at least.

Cheryl Crow: Yeah. Yeah. And we’re also gonna talk a little bit about interstitial lung disease and how that relates to RA as well in your case, but I would love to hear a little bit, we all in this podcast and [00:01:00] this community, we bond over our diagnosis stories slash sagas. I would love to hear, how were you diagnosed with seronegative rheumatoid arthritis?

Riley Harris: Oh, so that one started I was in my, my early twenties about eight, nine years ago. The problem was that it was my primary that diagnosed it due to insurance barriers. Basically there was a two, three year wait list for rheumatology. And he, he figured out what was going on and I wasn’t really treated for it at all for a couple of years at least.

But that was the, the first time that I had heard of that my labs tend to not come back textbook or normal for what they look for, for that kind of thing. So it, it took a while to, to even remotely hear the name. And then I believe it was three years ago the rheumatologist office that I’m at now, they reconfirmed everything due to the damage in my hands and my feet and just symptoms and everything else. ‘Cause my lab work still hasn’t kicked over. My RA [00:02:00] factor has never hit over on the positive.

Cheryl Crow: Yeah. That’s such a good though, example to know that you don’t have to have bl positive blood work, blood markers to have a diagnosis of RA. It’s known as a diagnosis of exclusion, which means that they take multiple factors into account, the physical exam, imaging, blood work.

And I have, I’ll put some resources in the show notes for what it means to be seronegative, ’cause it’s a, it’s a common area of confusion. So what, yeah, and what were some of your diagno or diagnosis, what were some of your symptoms that led you to go to the primary care in the first place?

It was a lot of pain. Was a lot of it in your hands?

Riley Harris: Mm-hmm. Yeah, it was pain in my hands. I’ve had pain in my spine and my back pretty much throughout this entire thing. I noticed some deformities with my feet with the the ulnar drift with my feet and my hands, which at the time, through probably the first, oh five or six years, because I was just [00:03:00] talking about this to my rheumatologist like two weeks ago.

The shoes I wore for work at the time, I thought that was what was causing my toes to my big toe to go this way and, have that on our drift. So for a long time I didn’t even put two and two together or connect the dots rather that that was the damage from the RA. So now that’s something that we’re having to try to go back to, to correct now.

And it’s gonna be interesting to say at least. ”Cause it’s like nobody ever. Anything, even when I would bring it up and be like, Hey, my feet really hurt, like, what’s going on with this? And it was just never really addressed. So pain was the biggest symptom. Fatigue. I, I was sleeping a lot, a lot, a lot.

Like 18 hours a day. Could not get up in the morning. The morning stiffness was, is still pretty awful. It, it’s a good couple hours to, to get up and around. The mornings are the hardest part of my day. So that was really the the, the biggest ones where I was like, Hey, we’ve, we’ve got an issue. And the problem was that I’m a complex case, so I have a lot of other stuff going on and did then as well pass the C RA and [00:04:00] we didn’t know.

So there was a whole slew of other symptoms that I was in the office for. And unfortunately my RA just got shoved to the side because it was like, well, what’s going on with all of this? And then again, the insurance barrier to the specialist. It, it took a really long time.

Cheryl Crow: Yeah. And I, I appreciate you, you mentioned that.

I think, there are some people that fall into a category, very straightforward, they’re otherwise completely healthy and then they develop rheumatoid arthritis. That was my story, right? And well, actually it wasn’t even mine now I realize, ’cause I had gastroparesis too. But there are people who have that just RA, like that’s their only health issue.

And then there’s people where it overlaps, like you mentioned, and I can just make it so hard. Because then you’re like, well, is it, am I fatigued from Sjogren’s or from RA or from, lupus or from anything else that I’ve already been diagnosed with? And that’s gonna, we’re gonna talk later a little bit about like coping skills and how do you cope with all those, the overwhelm that can come with [00:05:00] being, a complex patient.

But I wanted to also give you a chance to share a little bit of your treatment journey. Like, what are some of the highlights and low lights? Again, the treatment, the quest to find a treatment that works sometimes is straightforward and you get a home run the first try. Other times it’s lots of trial and error.

Riley Harris: That one has been a doozy. Being so complex. Everything seems to be very treatment resistant we’ve figured out over the years. The first one they tried me on was Methotrexate. That did not work started with the tablets. I was worse on that than I was beforehand. Especially with the stomach issues, the fatigue.

Then they switched me to the injectable version of Methotrexate that didn’t work either. Again, got way worse than what I was prior to even being on it. And unfortunately at the time one, they were trying to diagnose a rare condition called dermatomyositis, which is the other reason I needed to get into rheumatology and [00:06:00] couldn’t.

And then around that same period of time of these medications, which is my prior marriage, my husband suddenly passed away. So there was a lot going on. My health kind of got put on the back burner. There was a lot to take care of. It was, it was just a mess for a good couple of years before I really was able to get moved and get situated and get back into like a regular primary care doctor who was different, had no idea.

Brand new to me. And she tried, but it, it was a lot by that point. By that point, everything had just tanked all over again. I was going through these weird periods of just really bad flares that we now call rolling flares basically. And from, from what we can tell, it’s been basically like a three year rolling flare from, from this.

So now that I got out here the last three years, then they tried me on Saphnelo which I’ve heard good things about. A lot of people have had really good luck with. I didn’t seem to have any sort of luck with it at all. So far the only thing my body really tends to respond to is prednisone. [00:07:00] So we have to watch that one.

We’ve had to up it a couple of times and I think that was part of the problem was they tapered my prednisone while I was on Saphnello about six months in, out of the eight or nine that I was on, and I got way worse because of it. And we still haven’t quite gotten through all that. That same year I caught Covid and it was just a whole big mess.

So, then they ended up taking me off that one because they thought I was having non-epileptic seizures, which turns out I’m not. So I was off treatment for about a year actually trying to switch rheumatologists. And then that’s the one that I’m at now. I found out that they’re not seizures. It’s a myoclonic movement disorder from my essential nervous system being attacked from the RA, lupus, Sjogren’s combo.

And apparently that’s been going on for the better part of 10 years. So, and now, now we’ve started Rituxan, we, we had to bring out the big guns. This is where we’re at now. So, I do Rituxan infusions. I’m on plaquenil, prednisone [00:08:00] and oh, what is the other one? Sorry, my brain just glitched.

Oh no. I was on Imuran too for a little bit. That was the other one. Before the Rituxan, I was on Imuran for a little while. What is the other one? Oh, CellCept. I’m on CellCept, that’s the other one. So I’m on a pretty big, pretty aggressive combination right now.

We actually just discussed two weeks ago the Rituxan infusions are twice a year, and you do them twice over a two week period.

So you go for one for six to eight hours, and then two weeks later you go for another six to eight hours, depending on how your body tolerates it. Then you go right six later for another two is generally how they do that for, they’ve got it classified under my lupus right now, because that seems to be the big, the big one that’s like leading mm-hmm.

The pack or so they think at least we’re starting to wonder if we’re a little wrong about that at this point. But yeah, my, my last appointment two weeks ago not outta desperation, but just like, Hey, something’s gotta give. Like, I’m not, I’m getting worse, which we expected a little bit the first few months after the first Rituxan and that [00:09:00] pissed off stage basically after, so long.

But, my rheumatologist is actually going to try to talk to my insurance to see if I can start going every four to five months instead of every six. And I did forget one. I was on Benlysta for all of like months prior to the Rituxan the RAILD, the interstitial lung disease that I was telling you about.

That’s actually why I got switched to the treatment plan that I’m on now from the Benlysta. It’s widely used for -Rituxan and CellCept, both are the combination they tend to use for that for pulmonary fibrosis and interstitial lung disease. And that was actually my pulmonologist recommendation because of the state of my lungs.

So yeah. Yeah, it treatment’s been all over the place and so far, unfortunately nothing has really worked. So with shot in the dark kind of thing. 

Cheryl Crow: Yeah. And that’s, I mean, I’m, I’m just, I’m sorry that you’ve had that experience and I I, I don’t think we’ve actually in, in all the [00:10:00] over 150 episodes of this podcast, I don’t know if Interstitial lung Disease has come up before. So again, we’re gonna talk about like, how do you cope with all this and navigate it. But I would love to hear what symptoms did you have of that? How did it get diagnosed? 

Riley Harris: So I’m still learning quite a bit about this one.

I got linked up with the Pulmonary Fibrosis Foundation, actually got to do an advocacy thing with them for hell day for oxygen supplement, the oxygen supplement bill that just hit Congress. That was the one that we were advocating for with our representatives. It was a really cool experience. Really good information on the Pulmonary Fibrosis Foundation.

They have a ton of resources. I can send you some of the other links from like the articles I was telling you about that I found from the study. From what I’ve been able to tell, it’s a more rare manifestation of rheumatoid arthritis. If I remember correctly from the study, there’s about 10% of us that develop interstitial lung disease.

It’s classified as RAILD. If you have [00:11:00] the scarring, you only have pulmonary fibrosis if you have the actual scarring with it. And I do. Mm-hmm. It’s basically considered a rheumatic lung disease or an autoimmune lung disease. So when you go looking at those links on like those foundations and support groups, there will be different ones.

And it gets confusing because there’s idiopathic pulmonary fibrosis, which is basically no known cause, but it’s I-I-L-D-I think is the acronym. So it’s really, really similar. So you have to really look at which one you’re getting. For me. The problem started about three years ago. And this was another one of those instances, unfortunately that I’ve had a lot of over the last 10 years where I got dropped through the system in the medical department.

I was having a really dry cough constantly. I just couldn’t, couldn’t get rid of it. Didn’t matter what we did. Leasing a lot, that was a big one, was the wheezing. Really short of breath, especially if I’d be up and moving around or walking. But even just sitting down, it was really hard to, to catch my breath.

That was specifically like I walked in [00:12:00] information in hand, Hey, here’s this. They misdiagnosed it as moderate COPD, so it was missed. Yeah. Whereas with this, if they can catch it quick enough, you can’t get rid of it. It’s, it’s a permanent progressive disease. There’s no cure, but they can mitigate the symptoms and keep it from getting worse and it got missed.

So, fast forward three years later, years later, and I finally got into an actual pulmonologist in, out of that hospital system in a different one about two hours away, who luckily has personal experience on top of probably 50, 60 years experience as a pulmonologist with lupus, and RA, and knew immediately what was going on.

And so he got me set up with some inhalers got me a nebulizer machine that helped a ton. And kind of kind of walked me through like, Hey, this is what you have. And I had never heard of it before. It was, it was such a shock. Such a shock.

So it ended up coming down to him, my rheumatologist and basically the [00:13:00] founder of the rheumatology clinic that I go to who’s mostly retired he really only comes in on those complex cases where they just don’t know what’s going on. He came in and was my rheumatologist and basically reconfirmed everything with my lungs. So at that point, they all went, okay, it’s not bad yet, but it’s, it’s at a point where we’re concerned and if it keeps going this way, you’re gonna be in trouble.

The phrase I heard was to save your lungs, which is not a fun thing to hear from three different specialists was that we needed to change the treatment from the, the Rituxan CellCept. So that’s that caveat. Connect the dots to that one. But yeah, it was, it was very easily missed, very easily misdiagnosed, and it happens a lot, apparently, from what I’m seeing.

Both: Mm-hmm.

Riley Harris: It’s not something that they jump to, to, go, oh, well this is what it is, and, there is, testing involved that has to go to that. Normally they would do a lung biopsy and my pulmonologist was like, that’s not a good idea for you because I have [00:14:00] so much going on. And that’s probably why mine was missed as well, because it was just, it, like he said, it wasn’t just like I walked in healthy, but just his breathing symptoms.

It was, I walked in with all of this mess that has been, I’m flaring for so long. And yeah, it was, it was quite a bomb drop actually. That was the, the reality check for us of like, oh crap. There’s one another rare disease that I have now to add to my list. And two, like, it, it really is that severe. ’cause I tend to gaslight myself on that sometimes.

So it was, it was, yeah, it was a lot. 

Cheryl Crow: Yeah, a a hundred percent. And I’m, I’m gonna put some links in the show notes for the link between rheumatoid arthritis and Interstitial Lung Disease, or ra, R-A-I-L-D. I found one that said it li it lists all the diagnoses that you have except for sclero.

So scleroderma, it says it’s the primary pulmonary manifestation of RA as it is for other connective tissue diseases like scleroderma, inflammatory myositis, which that includes dermatomyositis, Sjogren’s, [00:15:00] and then undifferentiated connective tissue disease.

So, just, it’s just something to really, to, to be aware of as a patient and to know like, to advocate for yourself. Like you said, that it, it can even be misdiagnosed even though it is, the most common pulmonary or lung manifestation of .RA. And so obviously you have been through a lot. And before we started recording, I always ask the people I’m chatting with on who are sharing their personal stories.

What are the, what are you most passionate about sharing to the audience, or what stories do you want to make sure are, represented? And I, I I already know you a little bit by the way, I know you through the support group. But I really loved that you had these two things you wanted to share about.

I don’t wanna steal your thunder, but the first one is that how you have been found peace in small moments, like, especially when flaring and, and I would just love to learn, like, what does finding peace in those little moments look like for you? 

Riley Harris: [00:16:00] That one’s kind of a twofold. I really had to think about like how I wanted to word this. ‘Cause like it’s, it’s kind of a, a new concept that I’ve been having to use being house bound for last year. For me it probably looks a little bit different than the average person of like what living in the present moment looks like, I guess because of the situation as this. And especially since starting the Rituxan, I, I’ve been bedbound most, mostly throughout the days, at least half the days for about the last two months.

So it probably looks a little bit different. It really comes down to one just really focusing on what I’m doing at the time instead of the, the spider web my brain tends to do throughout the day of like, okay, well can I get this done? What is going on with this? Is this a new symptom? Like my brain with ADHD on top of everything else tends to go, not even nothing.

Constantly, it just never shuts down. So I really have to work at it to focus on what I’m doing, whether that’s, feeding my dogs [00:17:00] or doing something for myself, or if I’m painting it, it really comes down to just like stopping and taking that breath and going, okay, I’m here. This is how it is. I got this.

And it, and may not sound like the typical definition, but like that, that really does help when you’re confined to the same four walls all the time. Like there are days at a time that I don’t leave our house and it it, that can it, it messes with you after a while, especially if you’re not feeling well.

So there’s that. And then the second part to that for me is the twofold of that, I guess you could say, is when I’m flaring that badly, being able to stop and go, okay, this is how it is. It sucks, but it’s okay. Really coming to terms with the fact that sometimes you just can’t do anything about it. I’ve had some bad pains, layers where nothing in my toolbox has worked, my medications, haven’t touched it, nothing.

I mean, you know how that goes. You go down the list of like the heating [00:18:00] pad, the lidocaine, the other topicals, the braces, the meds, the naps. Like you go through the whole thing in your toolbox and like nothing even makes a dent in it. And really at the end of the day, there’s not much else you can do.

You can either sit and be upset and stress, which is just gonna make all of that worse. Or you can stop, take that breath and go, this is just how it is and it sucks and it’s okay that it sucks. All I can do is what I’ve done. Take the nap and go from there. And that’s been a really, a really tough one for me to wrap my brain on around.

I’ve gotten better about it, but that really keeps my sanity when it gets that bad. Especially because my husband works a lot, so I’m home alone, just me and a dog. And it, it’s very isolating. Like I said, it can really mess with your head, especially when you’re in that much pain so often. So it’s really crucial for me to be able to have those moments and go, I’m okay.

As horrible as this is, it’s gonna pass.

Cheryl Crow: You describe it in such a vivid way, and I [00:19:00] think I love the word peace in that moment, and it always reminds me of one, my therapist has used like the word surrender sometimes where you would, it’s like the last thing you think would be helpful, right?

It’s kinda like the acceptance paradox I always call it, where it’s like, well, wouldn’t you think at face value that, no, I just need another tool in the toolbox. I just need to try another thing. Try another thing. Wouldn’t that be more helpful in the moment, and it’s like if one of those tools is going to work, yes.

Like if there, but like you said, there are times when you have tried everything and so instead of using energy, maybe trying one more thing that’s maybe not gonna work. Using, like saying I’m going to be, or to allow this moment, however you say it, take a breath, accept this moment, allow it, tolerate it. It is a peaceful, more peaceful experience than it’s scrambling.

Is that, am I summarizing it [00:20:00] correctly? Okay. 

Riley Harris: Yeah. Instead of fighting it, surrendering to it. Yeah, that was the word I was trying to, trying to pull up. So thank you for saying that. ’cause my therapist does the same thing and it’s, it’s that surrender and I have a really hard time with that. I was so independent before I got so sick.

And that’s not something you just get rid of as a personality trait, so when it gets that bad, I immediately go into like that, that fight mode of like, what can I do? And it really didn’t, it really didn’t hit me until my husband said something about a month ago, right after the, the Rituxan infusion that I had when it really ramped up and everything was really angry and started having these really bad pain flares.

And he stopped and looked at me one night and was like, what are you doing? I’m like, what are you talking about? Like, I’m, I’m X, Y, Z and I went down the list of symptoms and this is what I’m doing. And he interrupted me and goes, no baby. What are you doing right now? Is this helpful for you at all? And I stopped and really thought about it and went, oh, oh, wow.

Like the, the light bulb [00:21:00] finally clicked and I’m like, you know what? You’re right. Like there’s, I’ve done everything I can do. Like, just go take a nap. It’s fine. Just sit. Okay. And from that point, it’s, I really had to really had to focus on it. And it is a surrender because it, it’s not easy, but it -why make things worse on yourself? There’s some days that are just like that, and I think that’s really hard for a lot of us to really wrap our brains around because we want to be better so badly. And it’s just like sometimes you just gotta let go and just ride with it. That’s the best thing you can do for yourself.

Cheryl Crow: Yeah. It’s so hard to undo that almost now, like subconscious programming, right? That you should always be fighting and you need to conquer your illness and mm-hmm. Again, it’s like my therapist used to say, you’re a good, well, he would still say it, but that’s not as often anymore. But you know, you’re a good problem solver, which is great for solvable problems.

It’s not helpful for unsolvable problems. And then that begs the question, okay, well how do you differentiate? It’s like the serenity [00:22:00] prayer. How do you differentiate between the things that you need to, that give you the strength to accept things change, the things I can change and accept the things that aren’t gonna change.

That’s my butchering of it. But I, and that’s to me, it’s, I’ve had to learn to embrace the uns, the, the fact that that’s an un fundamentally unknowable question. It’s just a matter of giving our best guess in the moment. Right. ’cause Right. If that heating, maybe the heating pad works for you nine times outta 10, you just don’t know if you’re in that nine or one, in the moment.

Riley Harris: Yeah, that’s exactly, exactly. We tend to get so frustrated when stuff doesn’t work. Like, like I said, nine outta 10 times at night and then that one time it doesn’t. I’ve been running into that a lot where like, it’ll happen and, like my lidocaine, the topicals that I’ve been using will work and, and I’ve got like a prescription strength one at this point from pain management.

Sometimes it works, and then the very next day or two days later, I’ll use it in the same place and it doesn’t, and I’m just like, [00:23:00] why is this not working? And it’s like I have to really stop myself and go, okay. That’s just where we’re at today. Like there’s nothing I can do about that. So it, it’s, it’s hard, but yeah, that’s exactly it.

Cheryl Crow: I mean, it’s very antithetical to just logic, right? It’s like they say insanity is doing the same thing and expecting a different result. It makes you feel insane to do the same thing and get a different result.

Like that doesn’t make sense. Fundamentally. Other than that, there is an inherent, I would say, I have had to accept that there’s an inherent kind of chaos and randomness to health issues at times. Maybe it’s a butterfly flapped, its wings a hundred miles away and that’s why I’m flaring up.

It’s just absurd. Sometimes you just don’t, it’s can be more helpful to just accept the unknown.

You brought up so many things I know that are gonna relate to people listening. And I think the other thing that, you made a good point before we started recording that I, I haven’t had a lot of guests on this podcast or just in general on social media or, and blogs and stuff.

There haven’t been a lot of people that I’ve seen at least talk about, [00:24:00] navigating being housebound like you mentioned, or mobility loss. You said you wanted to share a little bit more about the, the reality of what that is like for you, especially with the peripheral, it’s the peripheral neuropathy.

Oh my gosh, I can never say that, in your legs plus the RA. And also it sounds like you have a few kind of life hacks or things that might help others who are in a, a similar position. So whatever you wanna share on that. Sorry, that was like a very long-winded question slash prompt.

Riley Harris: Yeah, that’s something that like what I, I really had to think about like, okay, what, what can I show? Especially being housebound and then that, that’s when that light bulb clicked. Like, you never, you don’t see us when we’re at our worst, like I was telling you, earlier, it’s, we tend to hide away and that, unfortunately compound compounds, compounds – I could talk right today that, that societal. Judgment of like, oh, well you were out three days ago and you were fine, and now suddenly [00:25:00] you, you can’t do this. And it, I feel like that kind of makes that worse because we’re so prone to just hiding away at it. And so I thought, okay, well let’s see if I can show some sort of that if nothing else.

And like I was telling you earlier too, I almost rescheduled because of the pain flare I was in. And I got halfway through that email and went, what am I doing? I’m literally trying to hide away and do exactly what I’m trying to talk about. Like, that’s, it’s still counterproductive. Like this is one of those rare opportunities where like, yeah, you probably can’t tell just by looking at me, but like that I at least attempt to show kind of like what that’s like.

So, because it’s, it’s not talked about, I don’t think I’ve ever, I’ve read maybe like blog posts from, from people over the years, but it’s never something that really comes up.

Cheryl Crow: I’m gonna add one thing that I totally forgot to say that actually in, I wanna make sure to represent Carrie on the podcast, Carrie Kellenberger she did talk about that. She she is in 

So hers is difficult to treat Axial spondyloarthritis. So just because I’ve wanted [00:26:00] to be like, wait a minute. It’s not the very, very first time it’s come up in the podcast, but it definitely hasn’t come up like often, so, sorry.

Riley Harris: Oh, yeah. No, I’m glad you remembered that. That’s awesome. And I’m glad that I’m not the only one talking about it, because I feel like even in our support groups and stuff, it’s not, it’s not something that we talk about.

Like, I, I can’t tell you if I’ve ever really seen more than just the, the passerby sentence on, a Facebook post in a group or, if I happen to mention it in the, the graduate support group, when in my introduction, like it’s not something that we really ever see come up. And I get that a lot of that is probably the societal norms and the guilt that we feel are the shame or just not having the energy to get out and show that.

And I understand that nobody wants to take pictures or have conversations when you’re in that much pain and you’re that tired and can’t keep your eyes open or you’ve been throwing up for three days and can’t get out of bed. Like nobody wants to show that. But I feel like at some [00:27:00] point there needs to be some sort of a glimpse into that because there’s so often that we’re just not believed.

I feel like if any one of these providers, that we see could, could look and see us or even. A few hours in a day like that, then maybe we wouldn’t have so many problems. Like there’s just so much to that, that I feel like could be solved if we got a little bit more of that experience out there to people.

And the only time that I’m really seeing it now is like the really severe long covid or me patients that are finally coming out of the woodwork, even though they don’t have the energy to, by any means to try to start talking about this. I can’t say the, the myotic encephalitis, I can’t pronounce it correctly, but it’s severe.

Cheryl Crow: It, it’s what used to be known as chronic fatigue syndrome. Now it’s myalgic and encephalomyelitis, I believe is how you pronounce it.

Riley Harris: . I have chronic fatigue, but I have the less severe version of that from what I was told at least.

But it’s, it’s also tied into all of my other stuff, so [00:28:00] it’s hard to tell what’s what’s what, but that’s the only community that I’ve really seen talking about it. And that’s only. This one particular email that I get from one of those patients that has a, they have a, a podcast, I can’t remember the name of it.

I’ll have to, I’ll have to email it to you. But they’ve been going over all the long covid stuff and the, the funding cuts and the research and they stay up to date on like all of that stuff. That’s where I get all of my information from and they’re, they’re wonderful, but like even they brought up in a previous email, I think I got last month, that it’s the most severe of them that are coming out and using that energy that they don’t have and causing themselves to literally be unable to move in bed for six months.

Plus trying to bring attention and awareness to this stuff. Like they’re the ones that are stepping up and that’s the only time I’m seeing it talked about right now, which is not much comparatively speaking to, the grand scheme of things. So it’s important and I feel like it’s something that even in our support groups that we should be talking more of.

‘Cause I’m sure there’s a lot more of us. [00:29:00] Than just me. I guarantee it. It’s just nobody wants to admit like, this is what’s going on. There’s nothing wrong with being housebound. Yeah, it sucks, but there’s nothing wrong with it. I had to get through that bit. It, it’s hard to accept, but it, it is what it is,

Cheryl Crow: I really appreciate you, you talking about that. I definitely agree. There should not be any stigma. It’s like we’re all functioning to the best of our ability given what our bodies are allowing us to do. And this just came up actually in one of the, the newbies, one, the newbies support groups yesterday, where someone was like, well, I was feeling really guilty this week because I saw that there was a girl with rheumatoid arthritis who ran like the London Marathon.

And like, I was like, why can I, like, I can’t even get to the mailbox and she’s running a marathon. And it’s like, that’s what her body is allowing her to do. It’s not like she’s trying a hundred more times harder than you, like you have to try just as hard as she does. You are having to try to get to the mailbox and that is as hard for you as a marathon is for her.

It’s like we’re all, that’s how I see it. But I think so often people just wanna hear the inspirational stories of like, and there [00:30:00] are many, I would say statistically, the majority of people, as far as the research I’m aware of people with who have just rheumatoid arthritis, the majority are going into remission on the current medications. Just to put that out there, like that is one of the reasons why those stories are more prevalent because they are happening.

But at the same time, people are like, oh, so we don’t wanna share like the more severe or more difficult to treat people because we don’t want the people who are newly diagnosed to be scared that that could be their reality.

But it could. So you still have an opportunity to thrive and do the best you can with what, in what your body is allowing you to do. So, sorry, this is about you getting representation. So, and let, let me let you talk more.

Riley Harris: You hit it on the head.

It it, well, and it’s that, that inspiration porn that we talk about in a support group too. That’s the other problem with that is they, society wants to believe that it’s something that can be beat. They don’t, they don’t want to look at us and go, oh, that could happen to me at any [00:31:00] point, no matter what I do.

Like, oh, I can avoid this. Or, oh, she has it, but she, she does this marathon. She lives with normal my life. Like, yeah, some of us do, some of us don’t, and that’s okay. It’s valid. It’s just as valid trying to get to the mailbox as it is going to that marathon.

I’m so glad that you brought that up because that’s something that, especially when we get the severe, I know I struggled with it a lot of like just, if I get out of bed that day and I get one or two things done, that’s okay.

That’s valid. That’s as much as I can, I can do my best is gonna look different every day and that’s gonna look vastly different. Then when I can get out of the house and go run an errand with my husband or go out and play a game of pool for an hour with him on a date night. Like, it’s two vastly different things.

I have no control over that. 

There’s that comparison trap is so, so hard not to fall into it, especially when you don’t have much to do. Sitting around, that’s one of those life acts. You’ve gotta keep yourself busy, at least mentally. To a certain degree or you will just go insane, especially with that comparison trap.

Cheryl Crow: [00:32:00] Yeah, a hundred percent. And I, I would love to hear more about keeping your mind busy. Like what, what is a day in your life like, if you don’t mind sharing?

Riley Harris: It’s pretty simple, if I’m being honest about it. I found one thing that helps is I kind of stick mostly to a routine.

But I had to be flexible within said routine. But otherwise that, that kicks up, that, that shame, guilt spiral that we were, we were talking about. And it’s, it’s not much, if I’m being honest about it, like I pretty much leave the house for medical appointments and testing at this point. The occasional errands for maybe, an hour or two where I spend most of it in the truck or in my wheelchair with my husband.

But typically in the mornings I. I’m having sleep issues. I caveat that. We think that because my central nervous system is basically so fried out from all the inflammation and that it is now picked up my insomnia issues to the max. So I’m only sleeping like two or three hours a night, four, four to five on a good night, which is rare.

My average is two to three right now. So I’m up and around at 7 30, 6 [00:33:00] 30, but my husband goes to work, so generally speaking, he’ll leave. And then I’ll get up, get moving around a little bit, take my medication, scrub my caffeine, and I’m right back in bed. Like I’m not even gonna lie about it.

Cheryl Crow: And are you, when you said you’re getting up, sorry, this is the occupational therapist in me, but even drilling into the details, are you using mobility aids to get around the house like a walker or are you able to walk short periods? 

Riley Harris: It’s, I can walk short periods. The caveat to that is we live in an RV so I can do what I call the furniture lot.

Yeah. We can’t get a mobility aid into the bedroom because there’s about the, the width of knee space between the bed and the wall all the way around. And sometimes it’s slightly like I have to turn a little bit just at an angle to get around the frame. And then there’s maybe a foot, foot and a half between the bed and the bathroom door.

And then right here is my, my stove, and my kitchen table. So I do what I call the furniture walk, because this [00:34:00] walker right here is one of those ones that has just the the wheel in the back and then the where you like put, it’s made for when you’re actually like walking where you can lift it up and like push off of it.

Both: Right. 

Riley Harris: I use them more as a, as a chair because it’s not the type that I need right now. I didn’t even know they made these until recently. ’cause I, I used to have a rollator a while back when these did ones. We’re trying to get another one of those in the house. That way I can stay off my legs as much as possible right now. But they make little triangle rollators that are basically in the shape of a triangle and it’s just small enough where we could get it down the hallway to the bed so I could use that.

The problem is they’re about twice the price of a normal rollator, so they’re like 130 to 180 versus the, well now they’ve gone up, they used to be like 50 to 60, now they’re like 70 to 90 for just a basic seated rollator, which would work out here in this limited space. But it’s gonna hit this area right here before the bathroom and get stuck.

So I basically furniture walk first thing in the morning. If it’s [00:35:00] too terribly bad my husband will help me get up and stabilize me that couple of steps to get into the bathroom and get to. Whatever I need to, ’cause we have the other life hack that I’ll talk about. We have stuff set up in every room of the house and there’s a lot of duplicates of things, so I don’t have to try to manage and carry stuff.

So sometimes if it’s too bad after he’s awake, he’ll help me. But most of the time I can just roll. ’cause I can’t sit straight up in bed with my spine issues. I’ll roll off the bed and kind of grab the wall ’cause it’s, it’s right here so I can just do that little bit. It looks a little funny, but you know, it works.

Cheryl Crow: That’s, that’s a really interesting, I would say pro of an RV. Like normally in OT we would think, oh, an RV wouldn’t be like my at face value, I would think that would be a more challenging environment. But in terms of things being close together, actually it’s a bonus.

Riley Harris: It’s a lifesaver. I actually told him and my rheumatologist that I’ve never been so grateful to not be in a bigger house or an apartment. Because one, the financial burden of making it accessible for me right now would be [00:36:00] astronomical.

Like, it, it would be impossible for us to do. Yeah. I am a moderate fall risk because of the, of the peripheral neuropathy now which we just found out like a month ago. So because of that, like I have never been so grateful to be in an RV because of that small space. Like some stuff is harder.

Yeah. I’ll admit that. But as far as being able to still get around by myself, as difficult as it still is, yeah. Stuff is really close. So I can just, and if I do happen to fall in the bedroom, which I’ve done multiple times, I’m basically falling on the bed. Like the, the space is too small then unless I’m at just the right angle, I’m not gonna fall on the floor in between the wall and the bed.

I’m gonna hit the bed and that, that makes things a little easier too. And I can literally stand and do this at any given point and grab onto stuff if I need to. So that, that helps a ton, especially being a ball risk. So, that’s how I get around in the morning. 

Cheryl Crow: Yeah, no, that, that paints a really vivid picture.

And I just wanna, I, I usually pride myself on remembering to always define all the terms, but as an OT, sometimes I forget, or as [00:37:00] an occupational therapist, sometimes I forget. And so I think, I don’t think we defined peripheral and neuropathy. So the peripheral is like further down your body from your core.

So in your case it’s a lower body peripheral, so like closer to your toes or lower than your hips. And then and neuropathy is, you can’t feel stuff. Right?

Riley Harris: The way it was explained to me is it, it’s nerve damage from my essential nervous system being attacked from my immune system.

It’s all that inflammation from the RAand the lupus and all of that. They can’t really tell me exactly which one has done it because all of mine are so interlocked together being systemic diseases. Yeah. But because it went untreated for so long which it’s progressive as well and there’s no, no cure for it they, they didn’t catch it for three years.

That was the other thing that got missed. Mm-hmm. It just started up randomly one night, and for me it’s in the, in between my knee and my ankle most of the time. It started in my left leg. And I get the, the burning feeling on the [00:38:00] inside. Really sharp pain. I just started getting the electric shocks, which are probably the worst part about it.

But it is spread to both legs now. And it’s mostly just the front end of like that shin area of the front end of my lower leg. And then when we did that balance test and found out that I’m a moderate fall wrist, I found out that it’s actually been affecting my heels and my feet for a long time, and I didn’t know.

They’ve been numb for probably a good year and a half, two years, but I had no idea because they don’t tingle the way that the other areas do. I just thought I had calluses on my heels and had just adjusted to walking differently because of the deformity from the RA in my feet. I never put two and two together until she went to do those tests and I literally couldn’t feel where she was poking me on the heel of my foot and I stopped and I looked down and I’m like, oh, wow.

Like that. I can’t feel that like that. That’s a problem. 

Cheryl Crow: Have a very, very, very mild amount on my feet. But I was noticeable for me as an OT to the [00:39:00] point where, because I’ve been on biologics for 22 years I brought up to my doctor and I said, should we rule out like MS or something? ’cause sometimes people can get secondary MS to being on biologics long term or just rule out something else, that could be causing it. Well I’d also been in a car accident in 2016, so then when you add more things like you’ve experienced, it could be really challenging.

But turns out, ’cause I was noticing it was actually bothering me ’cause I was like I would, I have this thing of it was in my fingers and toes and I have lotion in my car on the driver’s side, like, p door. And I would pump it and think, I, I’d think I, it didn’t come out ’cause I didn’t feel it.

And I looked down and be like, oh, the lotion came. So I pump it like two or three times. I’d be, oh, I have a bunch of lotion on there. And I didn’t know at that time that yeah, four or five, four to five people per 10. So 40 to 50% do people with just RA. Now you have multiple things with lupus. Two lupus can also cause it, people can develop some form of peripheral neuropathy.

It’s usually for [00:40:00] RA. In like the wrist, like carpal tunnel type stuff. But sorry, not, not to go on a little tangent or not tangent, but like, I just wanna make to, to say for the audience that, it does, it can’t, it can happen, especially if in when the disease is not perfectly well controlled.

Again, if you get immediately on a good med that works for you when you go in remission, you’re not gonna be as likely for this to develop.

Riley Harris: It’s very important. And my, the problem we’re running into for me is that I’m allergic to all of the medications for nerve pain that they would give you.

So stuff like AM Maline course all of those, anything that’s an S-S-R-I-I, I cannot take it. I can not take it. And I’m already on Gabapentin, but it doesn’t do anything for that. I, it just doesn’t. I got lucky enough, it doesn’t seem to affect it really at all. I’m on that for other reasons. And they can’t really adjust the dose because of how much it mies me out past a certain dosage.

On top of the really high powered payments that I’m on, on top of all of the other medications that I’m on we figured it out. I’m on 21 medications a month, and there’s only about four to six of those roughly that I can interchangeably not have to [00:41:00] pick up every month. Like my EpiPen that I just got put on, which that was something I forgot about.

With the RAILD I have the extra component of it being how did you say it? Asthma without being asthma, basically. It’s like an asthmatic component is what I have to it. To a point where he put me on an EpiPen to carry with me constantly because he was worried that I would just run into something random that we weren’t aware of and basically have an asthma attack that’s not an asthma attack.

Cheryl Crow: Oh my gosh. Gosh. You fear unlocked. Geez, I’m so sorry you’re going through all this.

Riley Harris: Yeah. It’s, it’s been a lot. It’s been a lot. So, well there’s like that, like a steroid cream that I use for the rash that I’ve had for the last year that has to be biopsied. Mm-hmm. Which we’re pretty sure is one of the lupus rashes, but even my rheumatologist was like, it’s starting to scar.

We need to, we need to figure this out. So there’s a couple of those meds that I can like interchangeably, not have to get every month, but like it, it’s a lot. It’s a lot to keep up with. So,

Cheryl Crow: yeah, exactly. It’s a, it’s a lot to keep [00:42:00] track of and Yeah. I definitely, there nerve damage is a different feeling than, like, to me, the flaring of rheumatoid arthritis to me feels very much like that internal fluid within the joint is hot and it’s squeezing outward.

Like, I feel like there’s like a, like someone’s, I feel like it’s like a handshake from the inside out, right? But that’s not, it might feel a tiny bit like a burn in the sense of it’s warm, but it’s not a nervy burn. To me it’s not like that searing tingling.

So, first of all, it’s just hard to describe, your pain. But I think, yeah, that can help people understand, like if you’re have, you’re like, wait, how do I know if I’m having peripheral neuropathy? Because it, it’ll, it’ll, it also would be slightly in different places sometimes than within the joint outwards versus out from the, the nerve pathways.

Anyway, that’s a whole other thing.

Riley Harris: Totally right about that. And you were actually the first person that I’ve heard explain that [00:43:00] expanding in the joint pain, the lower joint of my lower back. The problem that I’m having with that is it feels like that joint is just slowly expanding out constantly for hours, days at a time with no break like that.

I’ve never heard anybody else explain that kind of a pain before. So I’m really glad that you brought that up because I don’t, so. Oh, we worry about the peripheral neuropathy too. It, it’s a searing, like somebody has doubt my nerve endings and my veins and my gasoline and then hit it with a blow torch is what it feels like if you, I know that sounds extreme, but when it’s bad, bad it is bad.

And the electric shock, I have literally fallen three or four times because of it. Because it’s like somebody taking like a, like those cow pro, pro can’t say the word right. The, the prongs cattle pros, the electric pros they use sometimes for, yeah. Yes. Thank you. It’s like getting cake in the rod. Thank you.

That that was what I was looking for. It’s like getting [00:44:00] with that from the inside.

So it, it can get really, really bad. And that’s my, like I said, mine started up randomly one night just out of nowhere in one spot in my leg. Nothing worked. I. And it didn’t calm down for about a month and a half. I actually went to the ER twice for what we thought was blood clots, ’cause my leg was swelling and we weren’t sure.

And it, it entirely got missed all due to insurance barriers and providers dropping the ball on referrals and, that kind of thing. And it, it was, it was a mess. And what’s crazy is like, I have mild damage according to my test in that one leg. And I remember telling my neurologist, if this is what mild feels like, I don’t wanna know what severe feels like, ’cause this is debilitating. I, I can’t stand up for more than 10 minutes at a time and walk around without it flaring up.

So I had to be very, very careful that throughout my day bit, I have, I do a lot of up and down, a lot of up and down. And the only treatment that I have available is lidocaine, basically.

I was getting lidocaine patches through pain management for about two years for, for other reasons for my [00:45:00] spine and my arthritis and stuff. And with the insurance switches there’s now a barrier to that where they won’t pay for ’em and they’re five, $600 a box for. 30 of them. So now we’re at a point where we’re still having to pay out of pocket for a compound lidocaine that does help, but insurance won’t pay for it.

And for 60 grams it was $60. The container’s about like this, and it’s only filled up to a back here. So like it, it’s only so much that you can get. And that’s, and that’s a good deal with where we’re at with the pharmacies that I use, they’re, they’re locally owned and they’re, they’re wonderful people. So they, they work with a lot of their, their patients and customers and stuff.

But it’s expensive because I don’t have any other, I can’t take any of the medications. So between that and the RA and my knees getting so bad, my right one in particular, my mobility went from okay, I can still walk around and, get stuff done and help out on the farm and stuff and, do what I need to do to, I can’t stand or walk for more than 10 or 15 minutes at a time.

It just. It’s just how it is. So hence the furniture walking. [00:46:00] ’cause then I can do like the hop around thing and the problem I’m running into is it’s more neuropathy in my left leg and my RAand my right knee. So I do a lot of this bit and my hips are already messed up. So it’s compounding all of these other issues that I have trying to navigate around that.

And that’s, that’s where the loss of mobility is coming into play. So I, I have a lot of little life acts to be getting around and stuff with my hands. ’cause my hands are my other biggest problem besides my spine. 

Cheryl Crow: Yeah. Yeah. I mean you have to, you’re just forced to be really creative. So like when we were first, sorry, first asking about like the day in the life, you were saying sleep is really disrupted, which I’m so sorry to hear ’cause normally sleep is like that relief you can get, from pain. So, and what is it like throughout the day a mix between like activity and rest? Like taking care of the dogs or getting yourself some food or socially connecting on social media and stuff like that.

Like [00:47:00] is there anything we’re missing in the day of the life?

Riley Harris: Yeah, that’s basically the routine is I’ll get up when he goes to work and he goes ahead and takes the dogs outside first thing in the morning. ’cause it’s just not safe for me to get down the three steps that we have going out to the RV.

And then the three steps to the ground we’ve got he actually just put mats, like what you see in kitchen restaurants. So it was great. Or whatever. We have two of those down at the front in front of the front door basically for grip purposes. So we have that, and then I’ll get up, give whatever I need to out of the bathroom and stuff and go back to bed and kind of sit with the dogs after he leaves and wait for my medications to kick in.

I figured out because of the sleep issue, I tend to take one or two naps before, before I get out of bed, basically. At least the one. 

Cheryl Crow: Mm-hmm. 

Riley Harris: And I basically just sit until I start feeling drowsy and then I’ll go ahead and lay back, take a nap, get up and then just give myself some time to wake up and unlock.

At that point, I’ll probably grab whatever caffeine and I had started. I usually use just enough the first thing in the morning to avoid the migraines because that, [00:48:00] that actually helps with my migraines quite a bit and I tend to wake up with them quite often. So after that point, usually after the second one, I’ll get up and feed the dogs first.

My husband works at a butcher shop, so we have them on a raw diet. Which is great for them, but it’s a little bit more work on my end. Mm-hmm. So that’s one of the other little wifi hacks that we do, is he uses like a big empty, old butter container that’s like just big for their dinner stuff.

And then we have the little bitty ones that you see from the grocery stores that we cleaned out. And I put what I call their breakfast stuff in that one, because it’s easier to pick up. Well, I have the one right here. It’s easier to pick this up out of the fridge for me than it is, you know that. Yeah, yeah, yeah.

Full raw, so that’s one of those little iPads that I do, and they’re labeled a lot of post-it notes over the house. So I’ll do that. And then usually after that I try to eat and just making my food and eating is enough to, at, at this point I’m wiped out. I’m done. I had to sit back down.

It’s either the pain levels are too high, my fatigue levels are [00:49:00] too high or, or the neuropathy’s too bad at that point, or my knees bothering me so much that I can’t stand up without, falling. So generally I’ll sit back down after that and that is usually the other nap of the day.

Unfortunately, as much as I hate it, I used to hate taking naps. And then after that, usually getting up and around, it’s pretty close to when he’s usually coming home from work. Sometimes he’ll come home and have to wake me up depending on how late I’ve crashed ’cause it’s not always an immediate thing.

So some, there are some times where he’ll come home at 6 30, 7 30 at night, and I’m still asleep from three, four o’clock in the afternoon. It just it varies day to day. And then he does dinner for the dogs at night because usually by the time he gets home, I’m still just, just wiped.

It’s a lot of up and downs throughout the day, like you said. And then we try to sit down and do dinner and, try to get a little bit of quality time in stuff because he does work early mornings, so he goes to bed around, midnight or one, sometimes he stays up. Most of the time he can’t, he’s too wiped out.

So. Yeah. And then I’ll usually stay up for a little bit after he goes to sleep till probably about two or [00:50:00] three. Sometimes it’s five or six in the morning before I’m back in actually asleep. And then I just start the process all over. And generally if I have phone calls I need to do, or appointments that, need to be made or whatever, I’ll do that around the same time that I feed myself and the dog.

When I get done with that before I go to sit down, because I know once I sit down, I’m done. I’m out. Like that’s, that’s just all there is to if I hit that bed, I am done for the day. So that’s how I squeeze that stuff in. Any social media time that I do that I wanna do, or advocacy trainings or, the support group meetings, that’s, that tends to hit around that time for me.

Mm-hmm. So it’s easier to work in like those afternoon ones like I was telling you the other day because of that, because usually I am, I’m done for before that. So it’s just a matter of being flexible and knowing that, okay, this is generally how my days go and if I can. Deviate and do some of the dishes or at least get the dirty laundry together for him to carry over to start that night.

Little stuff around the house that I can do. And then we’ve just basically got different stations in [00:51:00] every room set up and duplicates of med boxes and crushers and braces and, stuff like that. Anything that I don’t need to try to carry around because my hands are so affected. I do have the ulnar drift on both of my hands.

It’s progressively getting worse. I need to get the, the silicone spacers for that in my, my feet. Actually, we just discussed that about two weeks ago. So that’s the other thing that helps a lot is those little, little hacks throughout the day and stuff. So 

Cheryl Crow: I feel like we should do, if, if you ever have the, if you have the energy or, or bandwidth at some point would be interesting to do, like, this is again, the OT in me, but a video of. Your day in the life, in your, in your RV and, showing the different things. I just think it would be so instructive for other people and they would, they would learn from what you’ve, what all the, all the adaptations that you’ve put into place to help you, live the best quality life that you can.

And I was just, I don’t know if you saw this, this is something I didn’t ask you about before, so let me know if, if this isn’t, you don’t wanna [00:52:00] talk about this, but I, I’m very chronically online and I saw this video the other day that was really interesting. It was like an older woman wearing like very colorful kind of clothing and it was, I, I forget what the video was on, but it went extremely viral.

There was multiple millions of likes and comments and views, and it was somewhat, the interviewer asked her, are you in pain right now? And she’s like, yeah, I’m in pain all the time. And it’s, and it was like, I, at first I was like, yeah, this is like, this is what some people experience. But I think, so like, I’m like, why did this go so far?

I mean, she did a great job explaining it, but it was also like, oh, right. Because to most people who don’t experience chronic pain, that’s like unfathomable, right? That you’d just be able to sit here and have a conversation with me and be in pain. ‘Cause to the average person without pain, pain is like- you can’t do anything else when you’re in pain, you have to address it, right?

So, I’m just curious if you want to describe, like, what does your [00:53:00] body feel like right now, as we’re talking? 

Riley Harris: Oh, side note. I think I know the video you’re talking about, it’s the one where she goes, I’ve got a bit of a migraine going on right now. She’s talking about masking. Oh, yes, yes, yes.

That video. I, yeah, I know exactly. I saw that one the other day, matter of fact. And it was a perfect example of that. And I, I’m glad that you brought that up and brought us that follow up question because that’s exactly what’s going on right now. Like I said earlier, I almost rescheduled because of the pain that I’m having.

It. It’s a caveat, not a caveat, it’s a combination of things. Generally with me, it’s never just one thing, unfortunately. So the biggest one that I’m really dealing with is my spine issues. Or that’s more of a combination of the inflammatory arthritis and we think my RAhas been affecting it. But up until recently the scans haven’t really shown much besides the degenerative stuff.

We’re actually looking further into that with a lumbar MRI because of a sclerotic lesion that was found on a scan. So I’m having that looked into too. But right now my spine [00:54:00] feels like somebody has a grip on it and they’re twisting it from like here to about here. And it’s just a constant slow twist if you can imagine that that ache and that stretch and in that bottom ball going underneath that, like I was saying earlier, it feels like it’s just slowly expanding out, just constantly with no, no reprieve, no break.

Which can get pretty excruciating at times. That, that actually keeps me from walking. We, I tell my husband it’s locked up basically. ’cause it keeps my hips from moving the way that I should when I walk. So I walk, bend over and just like hang. Is it hangin bottle, I guess is how that goes.

Yeah, yeah. Because there, that’s going on. I’ve had a lot of stiffness and joint pain in my hands today. Particularly in my right one. My left one’s still pretty bad. But like trying to open, I can do it now, but this morning I couldn’t open my hand all the way. Like, this is every bit of energy I’ve got to, to do this and just hold on to anything.

So there’s [00:55:00] that. I have a lot of the muscle pain from the Sjogren’s, so all through my ribs here. And that, that muscle area that’s around your spine, it’s like. Somebody’s got me in a big hug and it’s just compressing slowly, constantly. So I’ve got that compression in, but that expanding out with the joint in my back right now which is not fun to deal with.

It, it gets pretty debilitating when it gets, gets bad enough. And then there’s the joint pain in my feet. My neuropathy in my left leg is pretty bad today. So that’s on fire from the inside out, but so is my right knee from the RA. So because it’s all swollen up like twice the size of what it should be today, so, I could go on too.

And that’s the sad thing, like I, I generally explain it to people that even with my medications, well prior to taking my, my pain medications in the morning with caveat to that, I do, I am on a transdermal pain patch that’s a seven day patch. So it’s a constant hourly release system [00:56:00] for seven days.

So I constantly have something in my system for. Like my long-term constant pain. Mm-hmm. And then I have a breakthrough pain medication I take every, every six hours for, for breakthrough pain because my breakthrough tends to be the worst of it. So like when I get up and it’s been eight, nine hours between that breakthrough pain dose it, my daily pain level is about a seven on the scale.

That’s what I wake up with. That’s what I deal with on a daily basis. Now with my meds, sometimes I can get it down to like a four, maybe a three on a good day if I’m really lucky. Mm-hmm. But like days like today it, I’m at a solid nine and you wouldn’t guess it. 

Cheryl Crow: Wow. Yeah. 

Riley Harris: Like that’s where it’s at. And I know that’s really hard for people hearing this to, to imagine that. ‘Cause we’re, we’re sitting and talking like it, there’s nothing wrong. I understand that it does not look that way, but I got dropped through the system so much and had to function as a parent, as a wife, as someone who worked, I was a bartender for a long time, working six, seven days a [00:57:00] week. I ran on a retroverted hip, hip joint for six months bartending.

I had no idea. I had no idea that’s where my pain was coming from. So, you get used to just having to function like you have to survive. You have to eat, you have to pay your bills, and it, you get to that point where you have to mask it.

When I go into the emergency room from a flareup of the chronic pericarditis that I have, which is for those listening that don’t know what that is it’s inflammation around the lining of your heart, which can be a complication of RA and Lupus and both.

It literally feels like I’m having a heart attack for three days straight, nonstop. I’m talking curled up in the fetal position, crying hysterically, can’t talk, can’t breathe it. It gets bad. And sometimes the only thing I can do is go to the emergency room because my medications do not touch it, and they have to check me for heart attacks and all this and this for family history stuff.

But it has gotten to a point that when I go in there for that and I tell them, look, I’m out of 10, like. This is what this is, that thankfully I go to the same place. So they know me and they’ve seen me enough [00:58:00] times to know what I’m talking about, but I’ve had it for the last three years, every day to some degree.

Whether it’s just the palpitations or just chest pain or pressure or whatever else. So I’m used to dealing with that. So by the time that I get in there, even my my blood pressure and stuff won’t always reflect that I’m in that much pain at that time. And I have to really rely on the fact that like, I, I know some of these nurses and hopefully I get one of them and not somebody new who’s not gonna believe me because I’ve, I’ve learned to mask it so, well, you wouldn’t guess it by, by just looking at me right now.

But that, that’s the reality of it. I can tell you when we hang up, when we get done with this recording, I’m gonna sit down. I’m gonna probably be out for a couple hours. That’s just all there is to it. Every bit of energy that I’ve got just to get up, get dressed, feed the dog, and do this. And this is actually more than what I normally do in a day.

Cheryl Crow: And yeah, and we’ve gone, I remember we, before we started recording, I had said, if we need to do this in two different sessions or three, break it down, that would, it’s totally fine. But I’m, I’m so appreciative [00:59:00] of, of the time you’re taking, because like you said, it’s like, like we talked about earlier with the M.E. CFS, it’s, it’s like if the the problem you want to represent is a problem with a lack of energy, then you don’t have energy to represent that problem. It’s like a circular, so I really appreciate you using your very limited energy to just paint, to share and paint that picture for people and Yeah, it is, it’s, it can be so, heartbreaking.

Like those ER situations where it’s almost like your coping me mechanism becomes used against you, right? Because they’re like, well, you can’t possibly be at a nine or a 10 because then you wouldn’t be coherent. You’re like, but I’ve practiced really, I’ve had a lot of practice, right? Like, my body has learned how to adapt to this to some, or your brain has learned to adapt to some degree.

. But yeah, it’s just you’ve, you are juggling a whole bunch of things and I usually have these, some rapid fire questions at the end.

I might just do a couple of them, if that’s okay. Just to make sure that we conserve your energy. Do you have [01:00:00] a, what words of wisdom or message would you wanna share to somebody who might be newly diagnosed with inflammatory arthritis? Whether that’s lupus or RAor Sjogren’s. 

Riley Harris: I really struggled with this one ’cause I feel like a lot of what gets said is all of the same things, which is all, don’t get me wrong, they’re all important things.

Mm-hmm. But it’s all the same points that get brought up to this question. And I even fell into that because my, my go-to is speak up like. 

Find one that will listen no matter what, no matter how crazy you look. Don’t, don’t try to be the perfect patient. Take your records, do your research, do your symptoms tracking, but find somebody that’ll listen.

Don’t wait. Because of the fact that I went over 10 years untreated and undiagnosed. And that’s, I can tell you right now that, that, that medical gaslighting is why I’m as disabled as I am. I would not be this severe had they just listened to me years ago when all this first started, or even five years in, so that’s [01:01:00] normally my go-to on that one. But again, I feel like it’s always the same stuff that gets. Brought up.

Cheryl Crow: I mean, that’s not one that always for sure gets brought up. I think that that advocacy is, is huge. I mean, if it hadn’t been for the, I’ve mentioned this before, but if it hadn’t been for the, the family and socioeconomic privilege I had at the time, I in the form of my mom and dad hiring like a concierge doctor who also gaslit me initially and said I wasn’t sick, I was just anxious, but then I was able to get the diagnosis within like a year of that.

I would, I would’ve been in this, potentially in the same position given the severity of like my, I unfortunate that was seropositive, so my blood work was all off the chart, and they were able to diagnose it. But prior to that, it’s like, I, I was so not the person that wanted to stand speak up.

I’d be like, oh, well the doctor says I’m not sick, so I guess la la la. Like, I don’t wanna annoy anyone. I don’t wanna bother anyone. And anyway, so that I. I think that, sorry, I, I think that’s really, really important. But if there’s anything [01:02:00] else you wanted to say for newly diagnosed people, you can also say that 

Riley Harris: That’s, that’s my biggest one is, and that’s a kind of a two part thing.

Like it’s a lot of work and a lot of energy to symptom track and do your research. But I’m telling you right now, that is probably the most important thing that goes hand in hand with speaking up. Had I not, I would not be here today. I’ve already gone septic once a few years ago from basically the ER doctor telling me your went went completely haywire for no reason.

You just got unlucky. It was what I was told. I was supposed to spend a week in the hospital and spent four and a half days, and it was severe enough the night that I went in that they didn’t show me my lab work until they released me. And I got, I got that close and had no idea. So the, when I say you have to speak up, that, that’s where that comes from for me because.

We shouldn’t be on desk door before somebody listens. It shouldn’t be that severe. And it’s, it’s really important. But had I not done all of the [01:03:00] tracking and all of the research that I had done to walk into these appointments and still get gast the way that I did it would’ve been a lot worse for me than what it was.

So that’s kind of the, the twofold thing for me. I asked my husband that question last night when I was going over some stuff, and his big thing on that one ’cause he’s got knee problems and some other stuff of his own. And the, his advice on that one was just take it a day at a time, basically, just don’t, don’t let yourself go easy on yourself really, which is it’s a good, it’s good advice.

That’s 10 seconds at a time is my go-to. And as I’ve told you in the support group before, you, you know the story about that one and it, I still use that every day, all day. If you can’t take the next five minutes, take it 10 seconds at a time. And that has literally saved my life. I don’t know how many times or gotten me through the worst of my pain flares.

That would be the only other piece to that that I think that I would add, and I know that was one of the other rapid fire questions is like phrase or whatever, but that, that’s my go to. He calls it a quarter mile at a time. Mine’s 10 seconds at a time. So, [01:04:00] it’s, it’s really, really useful.

More useful than I thought it would be. 

Cheryl Crow: I, I love it. No, I similar have had similar experiences where it’s just 10 breaths or five breaths or one breath, one minute at a time. I, I love that. And I think I’ll just skip to the last one just for time. Like what this is, this is like the $10,000 question off this podcast.

Like, but what does it mean to you to live a good life and thrive with rheumatic disease? 

Riley Harris: This is the one I struggled with the most. Me. Yes. I was actually checking his brain about this one. I was like, I don’t know how to answer this. So for me, I also will admit, I’m still in survival mode right now, and I have been for a very long time.

So for me, thriving with all of this looks vastly different than what you would normally expect to, to hear or see, I guess in that context. For me, it, if I get one or two more things done during the day without just absolutely feeling like crap [01:05:00] afterwards, from pushing it too hard, that’s thriving.

If I can sit down and actually be present in the moment while my husband’s cooking dinner and we’re training jokes or listening to our playlist and dancing around or whatever else, and I can just bebop on the bed alongside while he is doing that or whatever, or even just 10 minutes of actually playing with my dogs, no phones, no nothing, no thinking about what meds do I need to take or how much pain I’m in or what needs done and really focus in on, playing with them.

That’s thriving for me right now because I am in survival mode. Every little bit of my day is going to survival stuff. So thriving is very different. I look at it differently in the same sense that I look at re trying to go for remission. It’s not a destination that I’m trying to get to. Because I’m full well aware that with my situation being so complex and treatment resistant, that remission may be possible, but it’s not very likely.

Like that’s just not, if I hit it great, awesome. But that’s not the goal [01:06:00] at the end of the day for me. So I don’t look at thriving as a place to get to. I have to find little moments that I can thrive in now because I don’t know when I’m going to be out of this flare enough to differentiator, I guess, separate the two, if that makes sense.

So thriving today is being able to have this conversation with you the way that I have, because I almost rescheduled with where I was at.

That’s, that’s my way for the day. Like, that’s thriving because on a normal day I can’t do that, so it. It’s not the typical answer, but I really had to like rack my brain.

I’m like, how do I phrase this in a way that’s gonna make sense to people? And they can see that like, or really understand that you can still thrive in survival mode. It’s just a moment by moment by moment thing. And you have to be a lot more intentional with it than what our societal norm of thriving.

Yes, the rheumatic disease or any disease really at all would be. Does that make sense at all? 

Cheryl Crow: No, a a thousand percent. [01:07:00] And I think, the, the phrase that came to mind when you were saying that is like micro moments, like finding those moments, finding the freedom, I remember one of my favorite books is called Man’s Search For Meaning by Viktor Frankl, who’s a Holocaust survivor.

And he talked about, he said like, between stimulus and response is freedom and what is he, he said something like, the last of the hu human freedoms is our ability to choose our attitude in any certain set of circumstances, which I don’t, I still dunno whether that’s completely true. Like if we can completely choose our attitude, like I’m gonna choose to be like the most positive, optimistic person in the world, but meaning like the stimulus, whatever’s out of our control in our life is causing us to be in survival mode, right?

In your case, and you have this, this freedom to respond to survival mode, right? And you can choose to or be conscious about being present in that moment, even for those micro moments. And that can be, that would fall under the umbrella of, of [01:08:00] thriving in, in your circumstances. Same thing of like the amount of exertion required to go to the mailbox for some people is the same as other people going to, the marathon.

We should celebrate people doing the accomplishments that are relative to the context of their constraints. Not just like, we only celebrate people with RA who can like run a marathon. It’s like, you doing this podcast, that’s your marathon. That’s amazing. So anyway 

Riley Harris: Very well said, very well said.

I love that quote too, and I do agree with you. We can’t always control the, like the fullest degree. It’s a spectrum thing. Yeah.

That’s, that’s it exactly. It’s, it’s being able to sit down in that moment and kind of look, just, just for example, we play, he plays music on the speaker from our playlist when he is cooking dinner and stuff.

And he is, he is very goofy individual, my husband. So he is always dancing around and, joking around or whatever else. And it’s being able to take that moment and look down the hallway and watch for a minute and go, you know what, yeah, there’s X, Y, Z going on. Yeah. I feel like this, or this is what’s going on, or [01:09:00] this test is coming up, or we’re worried about this, or this medication is doing this, and being able to stop that chatter.

I go, you know what, at the end of the day, I have a loving, supportive spouse who’s my caretaker, which not all of us have. That alone is a blessing in itself. I would not be here if it were not for him and everything that he does. I have two wonderful dogs that help me with my conditions that I didn’t have to train.

They, they did it all on their own. They’re incredibly intelligent and they’re rescues that we just happened to get. I, I can’t believe I got that lucky with it. And at the end of the day, I’m still breathing. I’m still here and go, my life’s not that bad. I might be housebound, I might be bedbound some days, but I have things in my life that some people don’t have.

I have good things going on despite the chaos of all that, and that is thriving for me and being able to recognize that moment is that, that, that what’s the word I’m looking for?

Cheryl Crow: Thriving.

Riley Harris: Yeah. It. What’s the word?

Oh, brain [01:10:00] glit. Brain glit.

Cheryl Crow: Oh, I always say system processing.

Riley Harris: System processing, yeah.

Error 4 0 4 file not found., That’s the other problem with my central nervous system being involved. I have the brain spinal cord involvement from the lupus, RA, sjogren’s, and the, the neuro involvement. So my brain fog is so bad, like my brain will just shut down. I stutter. I use the wrong words.

I can’t come up with the right word. I thankfully, my husband’s a very good interpreter and I can maybe get one or two words out or the wrong one and he’ll go This. Yeah, that, that thing that does the thing that does the other thing that goes. Mm-hmm. Mm-hmm. 

Cheryl Crow: No, I mean, for what it’s worth, I feel like this is not to gaslight you, but I would say for, for what I consider my standards of coherency, you’re, you’ve been very coherent. Maybe, maybe, maybe my standards are offline because me having brain fog too, but you make sense to me, which means either we’re both completely [01:11:00] incoherent or we’re both coherent 

or the two.

Riley Harris: I appreciate that. I, I’ve had to focus pretty, pretty hard with it, but it, I’m, I’m doing better today with it than I expected because that was, that whole almost reschedule.

I was worried that I wouldn’t be able to get the words out because my pain brain, it gets so bad. That even he can’t understand me sometimes. So I was worried about being able to get everything out in a way that would be, in the coherent, understandable way for that. So I’m, I really appreciate that.

So you feel really good right now. 

Cheryl Crow: We, we got this. Well, thank, thank you so, so much again. This has been incredible. And we went over the time that I had that we had allotted for this. And I really appreciate, there was just so much, so much. I was, I usually highlight things as we’re talking that I’m like, oh, this would make a good like quote post or like a good Instagram reel, like excerpt.

And I’m like this basically whole podcast. I was doing that like every other minute. So [01:12:00] thank you again, and I know you’re not, yeah, so. Yeah I usually ask people to share their social media handles, but I know you’re not currently on social media, but maybe if you join it later, we can, I can add that to the show notes.

Riley Harris: It’s in the works, it’s in the works. I’m trying to very slowly get into the advocacy and getting to be more online. And because I, I’m a pretty open book about all of it. It’s just been a slow call. The problem is that when I first got like, everything really, like solidly started to get it all diagnosed three years ago, I made the, the graves mistake that my therapist points out and not giving myself that time to grieve, and I just jumped straight in.

So like, trying to share my story because I was so angry and so rageful, I didn’t want it to happen to other people because I know it does. And I was seeing it in the groups that I was in a lot. I wasn’t the only, 10 year, 15, 20 year person, that had almost died because of, this kind of stuff.

So I just jumped in head first as a way to cope, which worked for a little bit, but I burnt out so [01:13:00] quickly. And then I got even worse and more severe and I couldn’t keep up with it. So now it’s the very, very slow crawl of like, okay, I’m gonna do this six week training, and then we’re gonna go from there.

I’m gonna do this one event and go from there. And it’s just You passed the baby steps. Yeah. Yeah. Because you, but I had to get past the majority of it first, so 

Cheryl Crow: I think there’s no pressure. Just do it when, when it makes sense, for you. So, thank, thank you again. And for those listening, don’t forget that we do have, if you were just listening on your podcast platform, that I do put videos out on the Arthritis Life YouTube channel or just my website as well.

If you wanna watch a little video, you can see both of our post-it notes behind us. I can see yours on the mic. Is that the microwave?

Riley Harris: Yeah. It doesn’t work. Actually, we have one that was one of the, that, that’s why I said we could do a part two because the live pack thing that I have in place with like the duplicates.

How we’ve made the RV more accessible. Our microwave and mini fridge is like right [01:14:00] here across from the bathroom door. Oh, okay. And it was switched when we moved in here ’cause it was a different mini fridge that went out. Well there was like an open gap here and my husband actually came in when we got the newer mini fridge and like redid the shelf to raise the microwave up to where like I only have to reach like here instead of reaching way down here where I was 

falling over to make that easier for me to get into on top of using like lightweight plastic plates and stuff like that.

That way I’m not dropping things and hurting myself the way that I was. But this one doesn’t work and we just left it here. So now it’s like a bread storage container. And all of my notes need that. Don’t go anywhere. Stay on that with post-it notes.

Cheryl Crow: I love it. I love it. Well, yeah, we’ll definitely have to do a follow up on that, but I’m, I will say goodbye for now. But thank you again so much and we’ll talk to you later. Bye. .

​[01:15:00] 

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