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from teaching to leading support
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From Teaching to Leading Support Groups: Jed’s Ankylosing Spondylitis Journey

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Summary:

In episode 146 of The Arthritis Life Podcast, Jed and Cheryl discuss the realities of managing chronic illness, particularly ankylosing spondylitis, while navigating daily life and professional responsibilities. Jed shares how he balances his role as an elementary school teacher with his condition, describing tools like his compression gloves, heating pads, and a massage recliner to manage pain and fatigue. 

Both Jed and Cheryl emphasize the importance of finding a supportive community and adjusting personal goals, as chronic illness often reshapes life plans. Cheryl also highlights the power of acceptance and resilience, and together they underscore the value of living fully within one’s limitations, embracing good days, and finding joy in achievable dreams.

Episode at a glance:

  • Chronic Illness Challenges: Jed shares his experiences living with ankylosing spondylitis, a chronic inflammatory condition that impacts daily routines and long-term goals.
  • Balancing Work and Health: Jed and Cheryl discuss the practical tools and strategies he uses to manage pain and fatigue while teaching, including compression gloves, heating pads, and a massage recliner.
  • Finding Community Support: Jed and Cheryl discuss the importance of connecting with others who understand the chronic illness experience, providing both emotional support and practical advice.
  • Redefining Goals and Expectations: Cheryl discusses how chronic illness reshapes personal and professional goals, encouraging resilience and adaptability.
  • Acceptance and Joy in Small Wins: Both Jed and Cheryl emphasize embracing good days and celebrating small achievements, focusing on a fulfilling life within the boundaries of chronic illness.

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:

Jed Finley is an Ankylosing Spondylitis patient leader and advocate who founded his online support group in 2007. He also supports the AS/AxSpA community leading local groups and writing for axialspondyloarthritis.net. Jed lives in a log cabin with his wife and 5 animals, and spends his working hours teaching 5th grade in St Louis, Missouri.

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:

Full Episode Transcript:

Cheryl:  00:00

Yeah, I’m so excited today to have Jed Finley! Welcome to the Arthritis Life Podcast.

Jed:  00:05

It’s so great to be here. Thanks for having me on, Cheryl.

Cheryl:  00:07

Yay. It’s neat. Now, we’re recording this in 2024 and it’s been — I’m having more and more people where before I had never met, hardly anyone in real life. Like, on my podcast, everyone had been just social media friends, which you were a social media friend, but back in September, we got to meet in real life. So, yay. Yeah, it’s nice to connect with someone I’ve already established that IRL relationship with. But back to you, yeah. Can you let the listeners know where do you live, and what is your relationship to arthritis?

Jed:  00:40

Yeah, absolutely. So, I live in just outside of St Louis, Missouri, in a little rural area. But my relationship to arthritis is that I have been living with ankylosing spondylitis or axial spondyloarthritis since I was 12-years-old. So, I’m 43 now, so we’re working on 31-years since I was diagnosed with that condition. 

Cheryl:  01:05

Wow, that and, you know, that’s one that not a lot of people know can happen at the pediatric level. You know, you tend to hear more stories of people with axial spondyloarthritis or ankylosing spondylitis who are older. When you — I think we’re just going to dive right into your diagnosis story slash saga, you know, yeah. How did you get diagnosed? What were some of your first symptoms? 

Jed:  01:32

Yes. So, I mean, I was fairly active. I was an athlete. I played ice hockey, I played football, I played baseball poorly, but, you know, I knew, I knew what athletic pain felt like. I knew what it was supposed to feel like after a hockey game or after a football game. And then, around the winter of 1993 I started having pain and stiffness that was really unusual for me. You know, I was creaking and cracking, which, you know, I used to have a little bit of back pain, you know. But not this, this was a lot more intense. It was like I was being pulled down into the ground by some kind of extra gravity. So, you know. But I just kind of lived with it. I figured, you know, like, it’s probably just pain, you know, maybe it’s growing pains. That’s what they always said, it was growing pains. And I think I actually heard a lot of people my support groups lately talking about how, for them, it was growing pains, and then those growing pains never stopped. But that’s, you know, kind of what, you know, my parents thought it was. 

But then it was, you know, my big diagnosis moment was, it was Easter weekend of 1994. Off school, and I decided to play a nice game of one-on-one kickball with one of my school friends. And I mean, we played for like four hours. I think it was just constant running, running, running, non-stop. And it was kind of, it was kind of chilly that day. And as we all know, you know, how cold weather can affect arthritis. So, the next day, we went to, I was living in New Jersey at the time, and so we took the train into New York to see the circus at Madison Square Garden. And I was a lot more stiff, and I was a lot more, you know, in a lot more pain. And coming home on the train, I got to the point where I think it’s just sitting on the train for that period of time where I think it was like an hour-and-a-half ride. It I got to the point where I couldn’t walk anymore, just so much pain and so much stiffness. And my dad had to carry me off the train. 

And at that point, my parents knew that it didn’t go away. Easter Sunday came along, hadn’t gone away yet. So, we made an appointment with probably my pediatrician. He said this is above my pay grade. Sent me to a rheumatologist. I feel like it was pretty sudden, a pretty quick turnaround for that. Really, honestly, I don’t remember that well, but yeah, he looked at me and said, “You’re 12-years-old. There’s absolutely no reason for you to be feeling this way. I’m gonna guess that you’ve got ankylosing spondylitis.” Tested me for the HLA-B27 gene, and that turned up positive. And he said, “Okay, I think you’ve got AS.” the other side of the story was, at the time, there was no real good treatments for 12-year-olds. I think methotrexate was the only treatment at the time. So, he said, “Stay limber. Stay active. Try to ignore it.” And that’s what I did for several, several years.

Cheryl:  04:48

Wow. Oh, my gosh. So, much, so much to unpack. I mean, how did it — do you remember what it felt like to at least have, like, an explanation for the pain? Like — 

Jed:  04:59

Yeah. I mean, I think, I mean, the way I remember it, I don’t think it was that, I don’t feel like it was that big of a deal for me. I want to say that he gave me an NSAID to take. But, you know, I think I felt like I had, like, this special thing, big 21-letter word, which I hadn’t really even learned how to pronounce at the time, but this ankylosing spondylitis. And, but yeah, I mean, he told me he wasn’t much I could do with it. So, he gave me a list of stretches. I started going to PT, and just all I remember is getting, like, TENS, like, you know, electric, electric shock therapy, and it makes it sound so much worse. But then also, I remember bouncing a ball and riding a stationary bike. But honestly, I don’t, I don’t feel like I did that very long. So, yeah, not a lot going on at the time. 

And so, I just, I just lived with it. And actually, honestly, for about 10-years, I totally forgot that I had it. It was — I ran cross country and I played golf and I was, they said, my coaches always told me that I had to loosen up. I was too stiff. And then, I would remember, oh yeah, I am like, I am stiff. You’re right. I am. But the name ankylosing spondylitis. It sort of just left my vocabulary until this was right before I graduated from college. I was just about to lose my insurance, and so my parents were like, all right, let’s get you checked out for every single thing we possibly can get you on. And this doctor goes, “You know what? I think you might have ankylosing spondylitis?” It’s like, oh, yeah, I do. I remember that now. But had not, was not able to forget about it ever since then. 

Cheryl:  06:50

And so, were you having like periods of flare ups and remissions like in those 10 years? Or? 

Jed:  06:55

I remember, I knew that I would have moments being totally stiff. My college roommates called me ‘old man’, which was, which was a double thing, which I was, I was the oldest kid at my school. I had to do my freshman year twice due to Lyme disease, which, you know, there’s another, yeah, another factor there, yeah. So, I was trying to do pre-med because I still had that desire to help people in the healthcare world. But then, you know, I contracted Lyme disease, and I thought I had beaten it. Had a second, second coming of it. I was too tired; I was too worn out. I couldn’t keep up with my grades. 

So, my grades went all the way down the tubes, and they said, “You know what? We’re gonna ask you to repeat your freshman year, and maybe this time, focus on something like communications instead of pre-med.” And so, I’m like, okay, but yes, I was a year older than everybody else at my school for the most part. So, I was old already. But then, yes, it was very obvious that I had a bad back. I was always kind of, you know, kind of hunched over and, you know, moaning and groaning when I get up out of the couch. And, you know, again, it’s just to think about, though, again, I’m still in my early 20s, how much life I actually had at that point compared to now, 20 years later, right? I’d take those days. 

But, yeah, it was a — but, yeah, I, you know, I ran cross country for about, for about, I started off running for the team in college. Because of my grades, I wasn’t allowed to be on the team the second time around, but they still let me practice with a team because I still had the mindset, I gotta stay moving. I gotta stay functional. And one day I broke my ankle, and I say I broke it tripping over the foul line on a basketball court. Which again, it’s flat. You can’t trip over it. But that’s, I was just walking across the court. I wasn’t even playing, and my ankle just gave out. Turns out, I had actually broke my ankle months before, apparently. Because when they took the X-ray, they’re like, it looks like it’s been healed and broken a couple times now. I am very stubborn when it comes to my health care, so I probably did feel pain, but I just ignored it.

Cheryl:  09:32

That’s like, tell me you have chronic pain without saying you have chronic pain. An X-ray reveals that you have repeatedly broken your ankle without you knowing.

Jed:  09:41

Exactly. Whatever, I’m in pain every day anyway. What do I you know? What do I care? And so, but I, you know, that was the first time I ever stopped moving since my diagnosis, and the few months that I was kind of laid up, it was, that was the first time my AS had a chance to catch up with me. So, when I healed, I tried to get back into running again. I loved running. It was just, it wasn’t even the exercise. It was just that freedom of going places, you know. I loved a good 10-mile run over. I would do, I would do 10 miles over 3-miles. I mean, just that freedom, feeling of freedom. And I was in the middle of a 10-mile run, and then one day I just, I got tired, and I said, “You know what? I quoted Forrest Gump, I’m kind of tired. I think I’ll go home now.” And my running days were over ever since.

Cheryl:  10:36

Oh, my gosh. I didn’t, I didn’t know that. Yeah, that’s, that’s a lot. I mean, and I think what I’m curious about is in the 10 years — I mean, I’m curious about 500 things — but the 10 years since you got diagnosed, you’re in the early 2000s, you’re now there’s always — you’re an adult, which means a new world of medications at the time is open to you, and the biologics are on the scene. So, did you, what was your treatment journey from that point on?

Jed:  11:06

So, unfortunately, for almost 10 years — no, actually, it probably was about 10 years from that point, I still went untreated because of lack of insurance. I spent two — now, after college, I spent two years overseas where, you know, I was in Vietnam and Ecuador and, you know, it’s like that they had hospitals there. But, I mean, honestly, I wasn’t gonna be going there just for fun, you know, it was only for, like, serious emergencies. So. 

Cheryl:  11:39

And you were teaching English, right? 

Jed:  11:40

Yes. Yeah, teaching English in Vietnam and Ecuador. And I was actually in the Galapagos Islands for the Ecuador, so I like to say that I was teaching, teaching English to turtles.

Cheryl:  11:51

[Laughs] Amazing.

Jed:  11:53

Yeah. But so, I came back, and it’s like, all right, well, it’s time to get insurance. And so, I applied to all these different insurance plans. And I get a call back saying, “Unfortunately, we have to decline you because you have,” — and there can hear the paper shuffling — “Anykylosing spondylitis.” Again, it was, it was on a list. They didn’t know what ankylosing spondylitis was. It was just on a list of instant, you know, if they got it, I’m sorry. It’s a preexisting condition. We cannot let them have insurance with that. So, it was not until I got my first full-time public-school insurance provided teaching job that I actually got treatment. But at the time, before I had used my first biologic, my neck was — I was not fused, but I was so close, because ankylosing spondylitis causes the vertebrae to fuse together. I thought I was fused. Now, after some treatment, suddenly I was not fused anymore. But so, I was so close, I could not turn my neck practically at all. A little bit to the right, but practically nowhere to the left, which made checking my blind spots and driving really difficult.

Cheryl:  13:14

Did you turn your whole trunk? Kind of like —? 

Jed:  13:16

Yeah. I mean, that’s if I had to turn around. It was all the way, all the way around, because the rear view camera was not standard function, you know, standard equipment yet. But I will say, though that, you know, I went to, I went to a rheumatologist. I actually called up 13. There was 13 in the area. I got rejected by all 13 until about an hour later, one called me back and said, “She will see you as a patient because she finds you interesting.”

Cheryl:  13:48

Why did the other 12 reject? What? I never heard of it? 

Jed:  13:51

Well, it wasn’t so much, they either had no more space. 

Cheryl:  13:54

Oh, okay.

Jed:  13:55

Yeah, yeah, they weren’t rejecting me because of the condition. 

Cheryl:  13:59

I thought it was just like, we don’t want you, we have spaces and we don’t want you.

Jed:  14:03

No, no, no. They just they had, the had no more space, or it was we can’t see you for another six to 10 months. So, yeah, fortunately, this one called me back. She was semi-retired, so she sort of had the ability to pick and choose the patient she wanted. I, as I would find out, she was just really tired of the older crowd who didn’t really need a rheumatologist, as much of as like an orthopedic surgeon. So, yeah, someone with a with a fun chronic condition like ankylosing spondylitis? Yeah, she was ready for that. So, she saw me, got me on a biologic right away. And, you know, I mean, obviously after insurance, hem and hawed for a little while. 

Cheryl:  14:51

Yeah, yeah. 

Jed:  14:52

“Have you tried chemotherapy yet? You know, because we think that might work.” No, no, no. So. It was, I hear people saying, when did I start my biologic? It took me, it was probably another, like, three, four, you know, two months, you know. It was almost instantaneous. I was able to turn my head again. It targeted that inflammation that was affecting my, my cervical spine, and I was able to turn my head again. I was like, oh, my gosh. It was like, goosebumps. I’m getting goosebumps just thinking about it right now. It’s like this, it was a great moment. 

Cheryl:  15:28

It is so — no, and it’s not, you’re right. It’s not the average experience, but it does happen to some people where it is literally 24-hours, 12-hours, 48-hours, and it’s, yeah, it’s almost feels magical, right? I’m so glad you got that experience, but I’m so sad you didn’t get it earlier because of insurance. But better late than never, I suppose. I’m really glad you didn’t have a full fusion where your bones just kind of grow together, because otherwise, then that medicine can’t undo that, right.

Jed:  16:01

Right. Exactly. I think, I think it was a combination of biologics. And also, they always say, you know, don’t go to a chiropractor. It’s so bad for ankylosing spondylitis. Stay away from the chiropractor. Well, a chiropractor — I didn’t know they were chiropractor when they showed up. They came to my school doing wellness checks, kind of, “Hey, we just want to kind of check you out.”

Cheryl:  16:23

I do not endorse this, for the record.

Jed:  16:26

And they said, you know, they provided X-rays for me. And said, “Honestly, I think we can help you. Forget that popping and snapping that, you know, that chiropractors usually do, we just want to stretch you and do some very localized stretching,” you know, so they would kind of mobilize my shoulders and stretch my neck and just again, slow movements. Nothing, you know, nothing jarring. And I did that for about three times a week, for, I don’t know how long I actually did that, that little program that they had. But, you know, it got, you know, I took X-rays again, and I had space between my vertebrae again. So, they said it’s, it’s just, we’re hydrating it. Basically, we’re getting it open to allow, you know, fluids to get back into it. And, yeah, it gave me, gave me more mobility, and more, you know, further away from the fusion that I thought I had already experienced. 

Cheryl:  17:30

That’s great, yeah. And I think, yeah, there are times when, let’s say, the ‘fire’, quote unquote, of inflammation, starts within the joint itself, which is typical for the rheumatic, you know, diseases, or with psoriatic arthritis, it’s like, kind of the emphases, you know, the where the bone — but then it spreads. It has this cascading effect, like the secondary effects. You start holding your neck differently, and then the tissues on like one side become overstretched, and the tissues on the other side become over tight. And so, yeah, there are certainly soft tissue things that can help a lot. So, I didn’t mean to — I get scared with chiropractors, just there’s some that when they do the —

Jed:  18:07

I will say that I left that chiropractor because I felt like he was kind of taking advantage of me a little bit. But I went to another one who, honestly, he just wanted to learn about ankylosing spondylitis from me. He had studied it. He looked at my X-rays, you know, he wanted to make sure. And he would just again, nothing jarring, nothing crazy, but he would, you know, when my vertebrae were tilted. And I actually had, I had tilted hips for most of my life not even realizing it. So, he realigned my hips. He realigned parts of my spine that, you know, just gently kind of pop them back into the place where I can take that pressure off my spine. 

I never — you know, again, it’s whether you go to a chiropractor or not, totally up to you. Do your research, but find someone who knows your condition. That they act — yeah, fortunately, we have a local chiropractic college where actually we do our, I do my support group meetings, in exchange for me and my co-lead will come in and actually talk to their classes about spondylitis. So, they create some first-person experience and actually understand what the books may not teach them.

Cheryl:  19:34

That is, that is huge. I think I joked I’m an arthritis hand model at the University of Washington, because I’ve gone to their medical school a few times, and when they’ve asked for patient volunteers to come and just each of the medical students can just softly, you know, examine, oh, what does it feel like in a joint that has a little bit of swelling, not an uncontrolled flare, but not a completely normal joint of somebody my age? And that’s just an amazing empowering thing. And so, okay, so between the kind of chiropractic and the medications, you were getting your mobility back. 

And I should stop for a quick moment here, because typically, I like to do a little educational tidbit of, you know, ankylosing spondylitis or axial spondyloarthritis versus rheumatoid because there is this division, right. Symptom wise, I have inflammation in the tiny joints in the periphery of my body from rheumatoid arthritis. That’s like the little joints of my fingers and my toes. Those are like the worst. Whereas, the flip side is true, typically for spondyloarthritis, especially axial, which means back, right, spine. So, for you, you mentioned neck, cervical spine, that’s like the neck, back, pelvis, hips, right. Are those the ones that tend to be inflamed or stiff for you? 

Jed:  20:51

Yes, yes. The again, just the spine all the way from the top, you know, top to tail, and then the side joint, which is the sacral-iliac joint in the pelvis that allows you to bend forward. Now, I cannot — I can barely touch my knees, let alone my toes. So, it’s actually quite comical when I try to show off, but it has gotten me a lot of doctors to listen to me, because I’ve had a few say, “Well, you don’t fit the definition of ankylosing spondylitis.” You know, I actually had one rheumatologist who said, “You should be in a wheelchair,” like, saying, like, oh, people with aAS, you know, she didn’t think I had AS because I was not in a wheelchair. And so, I just, I showed her. I tried to, I tried to touch my toes, and saw that I could barely even reach my knees. And she’s like, “Okay, I might be wrong.”

Cheryl:  21:51

Well, especially the HLA, not that that’s exclusively diagnostic, but the fact that you’re symptomatic with that is, yeah.

Jed:  21:59

Right, yeah. And, you know the HLA-B27, you know they’re finding that, you know, when I was diagnosed, it was gospel. If you had it, that’s it. You got AS. But now they’re finding that most people who develop as do have the HLA-B27 gene. However, most people with the HLA-B27 gene do not develop AS. 

Cheryl:  22:23

Okay, yeah. It’s like the positive rheumatoid factor — oh, no, it’s not exactly the same. But a lot of people don’t realize that you can have positive rheumatoid factor and not have rheumatoid arthritis. 

Jed:  22:35

Yes.

Cheryl:  22:37

But rheumatoid arthritis will eventually have.

Jed:  22:39

Exactly. Yes, a hundred percent. And it’s also possible that you have the — or that you don’t have the gene and still develop AS, because it’s not just that gene. There’s a ton of other genetic markers that could possibly lead to it. And I mean, honestly, AS has not been studied as much as other conditions have. So, they’re not, they haven’t yet to figure out every single area. But the TNF-alpha, whatever marker, I guess, they know how to treat that. But the interleukin-17, -23, is they know that is a connection, a genetic marker with AS, but they don’t yet know how to work with it for the most part, you know, to have treatments that that target. That they just don’t really understand why. 

Cheryl:  23:35

It’s really, you know, anyone who tells me that they figured out, you know, the immune system, it’s like, it’s not, it’s extremely complex. Yeah, so.

Jed:  23:47

Yeah, and I will say that another little educational point for as is that typically you do need some kind of, like, physical trauma that sets it off. So, like my co-lead in my support group, it was a car accident. I’ve heard a lot other people have had its car accidents or like they fell at work or something. For me, I believe it was a allergic reaction. I had a very nasty allergic reaction to something in a farmers market. No idea what it was, because I don’t know what I’m allergic to when I didn’t eat that. But it was shortly after that that I started developing symptoms. So.

Cheryl:  24:30

Interesting. I mean, I think, yeah, there’s, I know, for rheumatoid arthritis, it’s usually like, they have the theory of, like, it’s a genetic predisposition meeting that environmental trigger, you know? So, yeah, maybe the environmental trigger could be a trauma, or it could be a virus, like when you said, you said, Lyme, obviously, you already had a diagnosis before that. But sometimes that can also, anytime your body’s fighting a virus or bacteria, it could kind of set off that. It could set off that immune response to go haywire. It can decide exactly, “Hey, synovial lining of the joints. We also don’t like that.” You’re like, no, no, that’s good. We want that. Oh, my gosh. And you’ve mentioned a few times, you know, leading support groups and building community. You know, I know that it can be hard to kind of be public about what, you know, what I’m saying is, be public, speak publicly about a health condition in your own jury. So, how did you, how did you become involved in your current, you know, work with running your groups, and sharing online?

Jed:  25:37

Yeah, I mean, so it was 2007 was when I really got started. The they had, you know, Facebook had just introduced groups. And I was like, you know, I’d like a group. So, but I was like, what do I have? Well, I have ankylosing spondylitis. I have never met anyone with AS before. So, I bet if I start a group, I could get a few like, you know, 10, 20 people to join me. And, you know, for a while that was what it was, you know, some people would come in. We would, you know, we would share recipes. Like, you know, because diet is a big thing for me, and also, you know, herbs. 

And, like, I really, honestly, at that point, didn’t even know how broad it was for biologics and DMARDs and NSAIDs and all the different drugs that are out there, because I was still living in that idea of, there’s nothing they can do. So, let’s just try to make life comfortable. And the, you know, the group is called Living with Ankylosing Spondylitis, because I wanted to encourage people to live with the condition. And eventually, you know, when Facebook started doing the whole algorithm thing, and people who had mentioned AS in their life started getting notifications, hey, maybe you’d like to join this group. Suddenly, you know, hundreds of people came in. I was like, hey, I remember when I hit 100 people. I was like, That’s so exciting. Just about two months ago, we passed 50,000 people. So, yeah.

Cheryl:  27:13

It’s a big job moderating that big of a group. My hat’s off to you. Because moderating that big of a group, my hat’s off to you. Whew.

Jed:  27:23

Yeah. Oh, it’s not easy. I tried to do it alone for so many years because I wanted to have some kind of control over what everything was. I realized I couldn’t do it. We get over, we get, like, 100 posts a day, and twice as many members trying to join. And, you know, have to figure out which ones are the spammers and which ones, which are the posts are the bad ideas, or, you know, Dr Balu is going to cure you of this condition, and they make that post 10,000 times, like when we grew out of the group. But it’s — so, I have, I think it’s, I got four really good spondy friends, you know, who now help me moderate the group. And it’s fantastic. But, yeah, I started the group, and then through that, I started meeting other people who had already gone into other areas of advocacy. So, you know, Dawn Gibson, she was my spondy sister, and Chris Hill, my spondy sibling. We started hanging out online, doing Twitter chats together, and that’s, you know, I’d heard the word ‘advocate’, and I was like, Well, I’m not going to march in Washington with a sign and, you know, protest patient rights and stuff. I don’t have the energy for that, you know. 

And then, I found out that, oh, what I was already doing with the support group is, in fact, advocacy. But you know, it’s I realized that I had this condition. I had a voice and a story that a lot of people did not have. I like to say that my spondylitis gives my pride and purpose. I am not ashamed of my spondylitis. I’m proud that I have it. Yes, it is a pain in the butt, literally, but, but I still, you know, the purpose that it gave me to be an advocate, to meet with patients, and, you know, go to conferences and talk and lead support groups and, you know, do online videos and stuff. I mean, that’s amazing, you know. And also, you know, as I think, let’s see, I think it was about four years ago that I did that panel discussion with you. And I was the only guy. I think there was, like, there was, like 10, 13, somewhere between that?

Cheryl:  29:44

I’m gonna link to this in the show notes. It was the storytelling hour. Honestly, my brain fog, I totally — so this is your second appearance on the podcast! Yeah, yeah. I think because initially I wasn’t planning on publishing as a podcast. So, then, yeah, then, okay, yeah, that was in 2021, January. So, yeah, three-and-a-half years ago. Wow. 

Jed:  30:04

I remember where in my garage my desk was when I did that. So, yeah, I was the only guy. And so, that was sort of my story that I told in this, in this, you know, storytelling, you know, production that you did, which is that, why aren’t more guys involved? And so, now, since then, I’ve met plenty of guys with AS who are willing to talk about it. But still, it’s the women do most of the talking. And my support group is 60% women, you know, and pretty much every online group is like that. It’s about 60% women, 40% men. You know, guys, guys, you gotta man up and talk more about your conditions, okay? 

Cheryl:  30:51

Well, and there used to be this thought that there was a significantly larger amount of men that have ankylosing spondylitis than women. Now, I think the latest numbers is about 50-50, right? 

Jed:  31:01

It is, yeah, it was believed for so long that only white men could get it. And so, because of that, women and women of color, and I mean men of color as well, could not get the diagnosis because there’s no way they could have it, you know, so they were getting a lot of lupus and a lot of fibromyalgia and other conditions. And the problem is, though, it’s different treatments, you know. If you don’t start treating AS, you know, as early as possible, it’s, you know, it’s degenerative, it’s progressive. You gotta really get it fixed. So, you know, they were not getting it again. The me, being a white male, and, you know, that’s when I was 12-years-old. Again, I just I fit right into the area that my rheumatologist is looking for, which is I was able to get to my diagnosis so early. 

But yes, since then, and these doctors have, you know, younger generations of doctors, they’re studying more. They’re understanding it more. It is about 50-50, straight down the line, men and women. And it really, I think there’s like what, there’s like one, or there’s like one or two ethnic groups where, like, nobody has AS and other that it’s like this, I think, like Pacific Islanders, honestly. I can’t — don’t quote me on that one, but there’s like, one or two where, like, no one has AS. Other than that, it’s pretty common, no matter who you are. So, it’s, yeah, we’ve come a long way. And I am very thankful that these doctors, the medical experts, are getting better education and just willing to try. Because, I mean, honestly, like whether, you know, whether you’re Crohn’s or ulcerative colitis or RA or ankylosing spondylitis, we’re all pretty much taking the same medications. So, there’s a lot of overlap, yeah. So, if you have these symptoms, what’s it really gonna hurt to try it out? I mean, if you get better, woo-hoo, you know?

Cheryl:  33:12

Yeah. Yeah. And I just for the rheumatoid arthritis, the latest number, just to tie up that end, because I don’t want to forget, is about 70% women, people with rheumatoid arthritis are women, 30% men. So, there is still a gender difference in rheumatoid arthritis, but not ankylosing spondylitis or spondyloarthritis. And so, yes, and I’m glad you brought it up. You know, race as well, and the kind of old misconceptions that led to these diagnostic delays, which you’re so right. The sooner you can get treated, the less your disease will progress typically, you know, you are able to go into remission long-term. So, that’s huge. 

And the other thing I really want to make sure to ask you about, because I see this a lot of people ask me, you know, especially young people in their 20s, 30s, and now — I still say we’re young. We’re in there. I’m same age as you, 43. But they ask, you know, what are, what are careers that are good for, you know, or what, you know, what is a good career if you have ankylosing spondylitis? I mean, I don’t know whether you said yes or no to being a teacher, but you’ve been — tell me about being a teacher in English with ankylosing spondylitis. 

Jed:  34:20

Yeah. So, you know, I have an interesting, I kind of an interesting journey with it, with employment and ankylosing spondylitis. When I started out, I was working in special education as a instructional assistant, you know. So, not the lead teacher, just helping out. I was assistant teacher, you know. So, take the IEP goals, you know, how can we tailor this to each kid? But then also, just, there’s a lot of physical needs with that. So, you know, getting down on the ground, picking kids up, you know, whether it’s changing, changing them. Just, there’s a lot of physical needs. And I did that for four years. Well, three-and-a-half years, and then it just became way too much. 

And I was in my like, in my team, like my, you know, classroom, I was out with having ankylosing spondylitis. I felt they needed to know why I was unable to do certain things. You know, I had got these color-coded wristbands from the National Axial Spondyloarthritis Society, which is the British group. And so, I bought it for three pounds. And so, but it’s a green one if you’re having a good day, yellow one for an okay day, and a red one for a bad day. And I just, I wore those just to say, so they would know without even asking, here’s what kind of day he’s having. And if I’m wearing the red badge or the — not the red badge, the red wristband, I mean, it’s just give Jed some space, and that will be fine, but it got way too much. So. 

Cheryl:  36:05

That’s a brilliant system, though, whether it’s schools or not. That’s a brilliant system. I’ve seen people have little fatigue meters or pain meters where it’s like a little pin you can slide it. That’s another great thing. But yeah, my previous specialty was in occupational therapy and pediatrics and special ed, and it can be a very much more physically demanding than your general education setting. Yes, sure. So, that’s a really good distinction.

Jed:  36:31

Yeah. So, they sent me to a different elementary school where I was basically a one-on-one with this little girl with cerebral palsy who just needed someone to help her write, you know, just like little, little physical needs that she needed, you know, but nothing high demand, you know. I didn’t have to pick her up or anything. I just, I would walk with her down the hall. She’d hold on to my arm. And that was about as physical as the job got. And that’s fantastic. And then, they brought me into a classroom, and then I was just teaching curriculum. And oh, my gosh, it was amazing how much less pain I was feeling. So, you know, since then, I, I had to, I had to get accommodations under the Americans with Disabilities Act, because I did have an administrator who found out about my condition and decided to bring it up during a performance evaluation, which huge, no, no. You cannot do that. He was young. He was inexperienced. I don’t think he knew, honestly, that you you’re not allowed to do that. 

So, you know, I went straight to HR and said, I need accommodations under the Americans with Disabilities Act, just because I was afraid that, you know, it was going to cost my job at some point. I needed some documentation that said you cannot — you can get rid of him if he like, if he is dangerous, or if he, you know, really messes up the education world, but you cannot get rid of him because he has trouble walking from one point to another, okay. Because I wasn’t going to do the other two things so. But yeah, I eventually, I did get a walker, you know, got a rollator, because the school I was in was a quarter of a mile from one side to the other. I had to do a lot of walking back and forth and upstairs and downstairs, and I needed a place just to sit down, honestly, that could travel with me. 

But, you know, so I was all about the accommodations, you know, they gave me a camping stool to sit on when I had recess duty. You know, I just want to make sure that I was covered. Because I am dedicated. I’m a great teacher. I know what I’m doing. I know how to do it. It’s just sometimes the physical side of it was too much. Now, now I’m teaching fifth grade. I am in a teeny, tiny school compared to the ones I was at before. Oh, my gosh, it’s so small. And I never, I just, the worst, the longest trip I ever get, is, like, next door to the library, and that’s it. So.

Cheryl:  39:07

That’s such a great hack, like, I mean where you live, like living under a more rural area if you’re going to be a teacher actually decreases the walking demand significantly. I love that. 

Jed:  39:17

Yes, pretty much. Yeah, exactly. So, you know, smaller school means less stress on your bones, kids. So, but, yeah, I mean, it’s great where I am and, you know, I always have a chair front of the room, back of the room. If I need to sit down. It’s there for me. But it’s not — it doesn’t get to the point ever where it’s now, oh, my gosh, I can’t function anymore. This is terrible. Grandpa’s gotta sit down. And, you know, I say, “Grandpa’s gotta sit down,” because sometimes you gotta put a little humor, a little bit of humor, into it. And, you know, so, some kids, you know, some kids are ready for the explanation of chronic illness and disability. My middle schoolers, totally. We talk about it all the time. These elementary kids I’m with now, some of them, they’re not quite ready for that full description yet. I still, during the Paralympics, took advantage. Showed, hey, look what these people are doing, you know? You know, they’re blind, but they’re still running a race, you know, they’re missing a leg, but they’re still swimming, you know? And it’s kind of an intro to it, but yeah.

Cheryl:  40:31

Yeah, I think it definitely depends on the kids maturity level. I mean, fifth grade is there’s some kids that are so advanced for their age and some that are still so immature, but.

Jed:  40:42

Exactly. So, I don’t use the grandpa line very much with them, but, you know, “Oh, my gosh, I’m feeling old. I gotta sit down now,” you know, the big ‘Oh!’ because I had to sit on the floor today for, like, a counseling lesson for my whole group. And I’d like, oh, my gosh. But they helped me up, and it’s great.

Cheryl:  41:04

My aching back, yeah. I mean, and that’s, yeah, I think it’s good for kids to grow up and seeing a diversity of bodies, a diversity of abilities, you know, I think. And it’s true that not every setting is 100% appropriate or supportive, or, you know, ideal for something like, I’m thinking, like being like a surgeon, or like, we have to stand for long periods of time. And for me, with small, you know, with finger pain, having to manipulate tiny little instruments, that would not work.

Jed:  41:34

No, no. And, you know, and my hands aren’t great either. So, I got tested for RA two years ago, and nope, you’re fine. Everything’s perfect. But then again, you do my scans for AS, I’m still perfect in every single way. You know, just it shows, you know, it’s different everyone. Like I say, you know, everyone lives a different experience. You know, what works for one person may not work from another what one person looks like may not apply to what another person looks like. But, yeah, I’ve got my fingers. They’re not as —

Cheryl:  42:10

Dexterous? 

Jed:  42:11

Thank you very much. Yeah, they’re not as dexterous as they can be. I do think about, oh, my gosh, yeah, I couldn’t do surgery or anything like that, let alone the standing. But any job I can do, or I can sit down and have the freedom to sit down, you know, because, and that’s another thing that I think, you know, workers with chronic illness and disability to work on is making it normal that, you know, you tell me I have to stand up this many hours. But do I really need to stand up this many hours? You know, can I still do my job with sitting down, with accommodations, you know. If I sit down, can I then stand up? 

You know, I know my last school, they really, they were huge, into the standing desks, you know, because some people, they couldn’t sit down for very long, but they could still stand up and work and sit back down and work. And just having that freedom to accommodate your work environment for you is just so important. So, you know, anyone listening, if you’re in pain, if you’re dealing with arthritis of any kind, or any other kind of condition, and you need a little bit of help it. It really can’t hurt to ask. Because people should have, there is the Americans with Disabilities Act, just to get those accommodations. I’ve had good stories. I know there’s been other people I’ve heard from who have not had, but. 

Cheryl:  43:48

Yeah, it has to do with, yeah, you have the right to reasonable accommodations, and that’s where the devil’s in the details. What is considered reasonable. And it is, you know, and it has — what isn’t reasonable if it interferes with your ability to do the require the core job and but it also has to do with how big the company is, because some smaller companies are not set, like, accountable for the ADA. But long story short, you know, you’re saying you advocate for yourself to have accommodations and adaptations. Is there anything else you would say for people who are considering teaching specifically as a career who have maybe also a autoimmune arthritis like ankylosing spondylitis?

Jed:  44:34

Yeah, I might say, like, definitely know your limits. If you cannot get up, you know, sit on the ground and get back up again and lift a kid up, maybe special education is not for you. But just know that I can teach a social studies lesson whether I’m standing or sitting. And that goes for every other you know position out there, or you know, class out there. Just, I would say that it’s not bad. I mean, just, if you just, if you want to be a core teacher, and, you know, teach math, science, you know, English, it’s actually a really good job to have, because it does allow so much flexibility in how you do things. And if you do recess duty and they want you to stand up for however many minutes, if that’s tough, guess what? You can watch kids on a swing set sitting down as well. 

So, I mean, that was my first accommodation was that, I said, the same principal who said, you know, “So, what’s this about you having a chronic condition?” He said, no one should be standing — or should be sitting down outside. Everyone should be up and walking around. And I said, I can’t do that. I need a stool. And HR was like, okay, what else do you need? Like, that’s it. I just need to sit down. So, you’re not asking for anything else? Nope.

Cheryl:  46:05

It’s so simple. It just might work.

Jed:  46:07

Yeah, right? I mean, like, I do — people ask for like, giant, like, exoskeletons to help them, like, walk. I mean, like, I’m confused. Like, yes, I’m asking for stool. And the ability to say that I’m sorry, this piece of paper says I’m allowed to sit down. That’s all I wanted, you know? It’s the most reasonable accommodation you could ever possibly ask for.

Cheryl:  46:29

Well, what about fatigue? Because I imagine teaching to be like you have to be on all the time. And what if you’re having a high fatigue day? How do you deal with that?

Jed:  46:38

Oh, my God. Well, you know what, I’m really good at faking it till I make it. I will say that being on has been good for me because I do not have a lot of downtime. So, just it has given me that. I don’t know if it’s fake energy or if I’m actually creating good energy, but I am able to get through the day perfectly. Now, given winter, you know that may change things. I may, you know when it gets cold, my pain, my stiffness, my fatigue, it always gets worse, you know, when it’s cold. So, we’ll see what happens. But however, when I get home, I sit in my recliner and I fall asleep until I need it. Because, you know it’s, yes, it hits me.

Cheryl:  47:35

So, yeah, I wonder. I mean, do you identify as like an extrovert?

Jed:  47:40

I’m an introverted extrovert. So, yeah, you put me in a group of whoever, I’m not the one talking. Now, as you met me, you met me at Healthy Voice, we’ve been talking for almost an hour here. Yeah, I can talk. I got comfortable, right? And, you know, I am able to create this energy and use it, because I enjoy this. I love talking about my chronic illness, and I love educating people, and I love doing podcasts. And this is where I get my strength. So, but no, after, when we’re all done here, I’m going back to sleep again. 

Cheryl:  48:22

Yeah, I’m similar. I feel — I’m not an introvert, I’m an extroverted extrovert. Like, I’m definitely an extrovert. But so, I feel the same way as you, where sometimes I’m like, I’m energized. There’s a textbook definition, right? You’re energized by being around other people. And then, the minute I get home, yeah, or even, like, right now, like, turn off this meeting. I’m saying I’m going to be, like, needing to recharge my physical, because my physical fatigue will suddenly take over, you know.

Jed:  48:50

I think I’ve commented on your TikTok multiple times, saying, I wish I had your level of energy. 

Cheryl:  48:56

I self-select the moments that I’m feeling good energy to do those videos. So, yeah, it’s like if a tree falls in the forest and no one hears that, yeah, my most fatigued time is when I’m not making videos. But I know, yeah, definitely, I joke on, like, yeah, I’m a high energy person who’s like is slightly lower energy because my chronic illness, but still, probably, yeah, my social energy is very high. But that’s just, but that would be one of the concerns I would imagine people having is, you know, like, some jobs, you know, and this is not to go down the rabbit hole of jobs, because we need to wrap up. But you know, some, some jobs where you’re not tied to, like being somewhere at a certain hour, you’re tied just to, like, performing these job tasks, like, within a week. So, if your fatigue is really severe, those kind of jobs can be better than a job like teaching, or even occupational, traditional occupational therapy, where you have, you’re tied to, like, an hour, you know. Like, you’re like, okay, these are the hours I’m have to be there. And you can’t just be like, I’m taking a nap now, you know? 

Jed:  49:53

Right. I don’t, you know, I’ve got a, I’ve got a really funny schedule where the first few hours of the day it, it’s really slow. It’s like we do like, a few minutes here, and then they go to PE or art or whatever for an hour, and then we come back for about 20-minutes, and then we go to PE, or we go to recess and lunch. Then, after lunch, it is a four-hour block of just, go, go, go, go, go. And, yeah, I have to, I have to fake it till I make it as much as possible. Now, again, much like the energy I’m giving here when I’m presenting, I give it my all. But like I said, I usually will then come home, sit in my massage heat recliner, and that’s where I am the rest of the night. 

Cheryl:  50:42

Yeah, yeah. Well, that’s a great that’s a great routine, you know. And moving on to the rapid-fire question, do you have — you’ve already given so many helpful words of advice, but do you have any additional words of wisdom for newly diagnosed patients, specifically?

Jed:  51:00

Yeah, absolutely. I think the number one thing you have to do when you first get diagnosed, well, let me — okay, the number one thing you have to do is ask as many questions as possible. I tell this to everyone. When you go into your doctor’s appointment, have questions and concerns written down, because they’ll try to rush you as quickly as possible. The average doctor’s appointment is like, 5-minutes long. You know, after waiting, I waited 6-months for a 5-minute appointment. Unfortunately, they have to cram in as many people as possible, so you want to utilize that time as much as possible. So, I would advise write down any concerns you have, you know, have the answers ready like you know they’re going to want to know. How much stiffness you have in the morning? What is your level of fatigue? Which joints are hurting? 

When I fill out that form, all I can do is think about what’s hurting right now, but I may forget that the middle, you know, the middle joint of my left middle finger has been inflamed for like two weeks prior. So, write those things down so you’re prepared. And then, after that, get a community. You don’t, you do not have to join my online support group, but most people do. I mean, I’ll be honest. Whenever I hear about a new like celebrity with AS, I’ll be looking up, hey, are they on my group? They are. Yeah.

Cheryl:  52:27

You got the cutting edge of groups.

Jed:  52:30

Absolutely. So, I just, get that community, whether it’s an online community where it’s like a like a like a Facebook group where you do message boards, or if it’s like an online support group like I do with the Arthritis Foundation, or an in-person group like I do at Spondylitis Association of America. Again, I do them all, but you choose whatever kind of community you’re looking for and maybe that is just writing tweets or Instagram posts or whatever.

Cheryl:  53:02

Or lurking. They call it lurking, where you just watch the community, and you don’t even participate, but you’re learning like a sponge.

Jed:  53:10

It’s funny. I will, I will look up, you know, just kind of look at a profile on my support group. And this person’s been in my group since 2018 but this is the first time they’ve posted, you know. And they’ve been there, it’s just, you know, sometimes their answers are getting, you know, getting it, or the questions are getting answered. And so, but it’s, there’s tons of groups, you know, like, there’s, I think I want to say somewhere like 5.8 million people in the United States alone who have some kind of spondyloarthritis. It may not be axial spondyloarthritis, it may not be ankylosing spondylitis, but some kind of spinal arthritis. There’s a lot. There’s millions of people. You are not alone in this. And there are tons and tons of communities that you can join.

Cheryl:  53:57

I love that. I will add links to those, the virtual Arthritis Foundation one. And of course, your Facebook one, and the Spondylitis Association. I didn’t know that they had that. You were the one doing the in-person one, because I was going to ask you, you mentioned an in-person group. That’s amazing. And you know, I also have my group is initially I made my group Rheum to THRIVE, was for Rheum to try to THRIVE specifically, but because so many people were looking for more, like, information and resources and connections for the related autoimmune arthritis like psoriatic arthritis and spondyloarthritis, I also, now, I redid the program in 2023 so that it includes psoriatic arthritis and ankylosing spondylitis as well. So, that’s, that’s something I always like to tell people, too. Yay! There’s lots of options. There’s definitely options. Yeah. And do you have — the dogs are like, yes, all of the dogs. Do you have a favorite arthritis gadget or tool in your toolbox?

Jed:  54:55

Oh, yeah. Well, I do have my compression gloves. Especially I use them in the winter time, they’re not, they’re nothing special, like they’re not high tech. But, you know, they keep my they keep my hands snug and warm, and that’s important. I have my — oh, I think it fell off. Here we go. I have my heating pad here, my cape heating pad. And I just, you know, I pull this over my shoulders, and it’s great, you know? It keeps my back warm when I’m sitting at the — 

Cheryl:  55:30

I have the blue one, yeah. It’s so great.

Jed:  55:35

You know, it keeps my back warm when I’m sitting at my desk or at my table. And so, I love this thing. This is, I think, the third one I’ve had, because I just, I wear them out. But, yeah, this one is, I’ve had ones with vibrations as well. But the heat is the most important part. I love heat. Those are my two main, you know, kind of gadgets or things that I use, just, you know.

Cheryl:  56:12

Your lazy boy, the recliner chair. That’s a classic.

Jed:  56:16

And my, yes, and my heated massage recliner chair which, my wife determined that I needed. And I agree with that. It’s also, ooh, it’s also a lift chair. So.

Cheryl:  56:27

Oh, you have the fancy on, yeah. 

Jed:  56:29

I have the fancy one. So, if I, if I ever have trouble getting up, I just push a button. It stands me up for me. 

Cheryl:  56:35

Beautiful. Oh, those things are amazing. I went for an Airbnb that had one, and I was like, I’m never leaving. Do you have, a totally different note, do you have a favorite book or movie or show you’ve been watching recently, or reading?

Jed:  56:49

Oh my gosh, ‘I love Only Murders in the Building’. I just, I just finished the fourth season and I’m so —

Cheryl:  56:56

I didn’t finish it yet!

Jed:  56:57

Oh, I’m not spoiling anything, but, oh, my gosh, I love Steve Martin and Martin Short and and, you know, Selena Gomez, yes. And this season has been so great with all the celebrity, oh, celebrity cameos that they’ve been coming in. But yeah, I love that show. Book wise, I’m always, all I ever read is how-to-manage-your-classroom-better type of books. Yeah, always trying to learn. But yeah, it’s, I enjoy just mostly, I just enjoy sitting in the quiet. That’s, you know, kind of my bliss is just decompressing and just, you know, letting, letting the pain and the exhaustion just melt away.

Cheryl:  57:49

I love that. I’ve heard of this quiet, I’ve never experienced it. I’ve heard good things. I love it. And then, do you have a favorite like inspirational saying or mantra, just something that like you find yourself repeating? 

Jed:  58:06

I mean, I — not one. One I always say is, “A wizard is neither early nor is he late. He arrives precisely when he means to,” and that’s from the Lord of the Rings. And I used that quote in in a book that I was a part of. It was 13 of us provided our stories. It was called ‘Made to Overcome: Chronic Illness Edition’. And I, so it was most, it was mostly Healthy Voices people, which, you know, how we all got connected for it. But I wrote about about my life with ankylosing spondylitis and kind of the ups and downs that I live with. But that’s the quote I used at the top of my, you know, right underneath my name, which is because I had had AS for like, 20 years before I ever really got involved in advocacy. But, yeah, the moment that I was, when it presented to me, I was ready, you know. Like, I wasn’t trying to force it. I wasn’t trying to, you know, make things happen when it wasn’t time for them to happen. But when the moment was right, I struck.

Cheryl:  59:29

I love that. You are a wizard. This is amazing. Last one, that’s a big one. What does it mean to you to live a good life and thrive with rheumatic disease?

Jed:  59:41

Yeah. Look, this can be such a killer, no doubt about it. It can wear you out. It can hurt your self-esteem. Physically, it’s just terrible. But there is so much hope. There is so much, you know, good that can come out of it. Like I said, like I was diagnosed with chronic arthritis of the spine when I was a kid, but it has allowed me to speak at conferences, sit on panels to educate people and like pharmaceutical companies and other nonprofits, and I have written books, and I have, you know, had a couple good TikTok videos and just stuff like that. It has given me so many opportunities to do things where I could really just use my energy. Wherever it comes from, I use it. 

And, you know, it’s like, you don’t know what’s going to happen until, until it happens. But I see people, you know, with axial spondyloarthritis, who are just having the absolute worst day, and they don’t know how to deal with it, and they don’t know what’s going to happen, and they are mourning the life that they’ve lost. And believe me, me too. I wish I could still run. I wish I could still play sports. I had it. I had a dream to run a marathon. I may walk one day, just for fun, because walking is still okay for me. But for the most, but those, those things are passed. I had to, I had to give up on those things, but it’s allowed me to do so much more. So, even on your worst days, even when you think, this is it, this is the rest of life, you do have those days of remission where things get a little bit better. 

You know, take advantage of those days. And yes, doing more may hurt you in the future, but you can only do so much, right? I always say that I would much rather hurt because I did something than hurt just because my body hates me. So, and again, that’s just me. Maybe that doesn’t apply to you. I don’t want to force people to do anything they don’t want to do, obviously. But I really believe that, you know, take advantage of the good days, and it will hopefully just kind of push away those bad days, you know, even if it’s for an hour or two. Just celebrate, celebrate the good life.

Cheryl:  1:02:09

Yeah, I mean, what I hear and what you’re saying, you know, I definitely, I asked, what does it mean to you? So, you’re okay. It doesn’t have to mean the same thing to everyone else. So, that’s good. You know what, your answer is completely 100% true to you. And I think what I hear in that is a thread of, like, acceptance of this is what it is like. Yeah, I had the same thing as you. I had a really specific — I still was able to run for a while when I was first in medicated remission after my RA diagnosis, but I kept putting off this idea of running a marathon. I was like, I’m gonna do that later, I’ll do that later. And then, of course, I didn’t realize there was a possibility my meds to not work. I thought they were just going to work forever. So, anyway, that’s my story. 

The point being, you know, I could spend the whole rest of my life mourning that dream, or I could make new dreams that are actually achievable, right? Or I could say they’re side by side. I could still mourn I haven’t run a marathon, and I don’t know. I might; I might not. Probably not seeming at this point, but maybe, and I’m gonna let that co-exist alongside, hey, here’s some things I can do. You know, I just went to dance class again for the first time since pre-pandemic, a swing class, and I hadn’t been, I hadn’t done it very much, you know, since the —

Jed:  1:03:16

You could have fooled me with your performance at Healthy Voices. But okay.

Cheryl:  1:03:20

I’ll have to put a link to that. Yeah, the Healthy Voices, when we say Healthy Voices, that’s a conference that’s sponsored by — or it’s put on by Johnson & Johnson, but it’s a really amazing patient advocacy summit conference. And so, and there is a talent show, and I did enter it not knowing the level of talent that was going to be there.

Jed:  1:03:40

I’m not brave enough, you know, I’m perfectly okay grabbing the couch in the front seat and just watching.

Cheryl:  1:03:45

Yeah. I mean, there were, like, people who could have been on Broadway, singers, and there was a drag queen, and there were so many cool talents. And I was, luckily, I was only one doing vintage jazz, 30s, 20s, 30s style solo Charleston routine, so no one could tell that I was — no, it was great. It was great. And, you know, lean into the life you have, not the life that you wish you had. That’s what it feels like you’re saying. I love that. Yeah. Lean into your arthritis life. [Laughs] That’s a new tagline, that’s a new tagline to the podcast. I love it. Okay, is there anything else? I’m sorry. I feel that now I’m feeling I’ve been keeping you away from your beautiful chair, your massage chair. Is there anything you want to share with the audience before we wrap up?

Jed:  1:04:27

You know, just, I just want to say thank you for having me on and you know, it’s such, such an honor to be a part of this, of this podcast. And you know, I’ve been a fan for so long, you know. 

Cheryl:  1:04:38

I’ll give you your trophy.

Jed:  1:04:41

Yay, hurray. I’m so glad that we got to meet at Healthy Voices. And, you know, just, I really appreciate what you were doing, and just the level of which you do it. So, you know, just want to throw a little love back at you, because it’s, I really, you’re great. All that you do is perfect. Thank you for doing what you do for the community.

Cheryl:  1:05:00

Same for you. And similar to you, I had a long period of living with this before I became involved in building community and being an advocate. And it’s a wonderful thing to be able to go pay it forward, you know, and help other people. And so, thank you so much, and I will definitely put links in the show notes. But where just to say out loud, where can people find you online?

Jed:  1:05:22

Yeah, so you can find me on TikTok at @LivingWithAnkySpondy.

Cheryl:  1:05:29

I love that, yeah. 

Jed:  1:05:31

And on Instagram at @JedFinleyAS, those are my two main social medias. Or if you and you want to find the support group, go on Facebook, type up ‘Living with Ankylosing Spondylitis’. It’s huge. It’s the biggest moderated group on there. You’ll be able to easily find it and just make sure you answer the questions, and I’ll let you in. 

Cheryl:  1:05:55

And that is a huge, huge job, and that you do that all, you know, just on your own time is and that you actually take the time to moderate it is a huge service to the community. Because I do, I will have said, I will say, I’ve been known to warn people on just the level of moderation and curation of, you know, accuracy on some Facebook groups is not great. But, you know, but that doesn’t mean that all of them are bad, right? It’s just kind of like a thing to keep in the back of your mind. 

Jed:  1:06:27

You know, every once while, someone who’s selling something that may not be the best advice ever, you know, get through, but we’re also really good at staying on top of those things to make sure that the advice you get in that group is the best that can be provided. 

Cheryl:  1:06:45

Yeah. And you know that that kind of thing that can happen when you’re, you know, at the waiting room. I mean, it’s not specific to, you know, right, it’s just on a larger scale in Facebook groups. But yeah, oh, you’re at 51,000. I’m getting the link to your group right now to put in the show notes. So. 

Jed:  1:07:00

Yay! 

Cheryl:  1:07:01

Yay. Growing by the minute, by the time this is published, to maybe 55,000 now. Yeah, that’s amazing. Well, thank you so much. I’ll wrap it up for now, but hope you all go follow Jed. You have a great voice for radio, too, so I love it. I feel like, when I first started this, I was like, I don’t like my voice. But anyway, that’s negative self-talk. And hopefully they’ll join your group and follow your axialspondyloarthritis.net, also guest writing, that was obviously — I want to make sure to mention that you do writing for them. And thank you so much. We’ll talk to you later. 

Jed:  1:07:37

All right. Thanks a lot, Cheryl.

Cheryl:  1:07:39

Bye-bye for now. Bye!

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