Summary:
Living with rheumatoid arthritis as your only diagnosis is challenging enough, but when you add multiple rare comorbidities (or additional diagnoses) it can become overwhelming.
In this episode, seasoned patient and registered nurse (RN) Jan Hempstead shares her best tips for managing stress and living a fulfilling life with multiple comorbidities. Jan lives with rheumatoid arthritis (RA), Ehlers-Danlos Syndrome Hypermobile type (EDS), hereditary alpha-tryptasemia (HAT), Dysautonomia, and more. This includes discussions about the importance of support (including Cheryl’s Rheum to THRIVE program) and mindfulness, meditation and Stoic Philosophy in Jan’s journey.
Episode at a glance:
- Diagnosis story: Jan shares how her rheumatoid arthritis diagnosis was very difficult due to her comorbid conditions: EDS Ehler-s danlos syndrome, dysautonomia, and hereditary alpha-tryptasemia (HAT)
- Best tools in Jan’s toolbox for RA and EDS
- Biggest challenges with Managing multiple comorbidities
- What helps Jan cope with managing multiple conditions
- Importance of community and support groups
- Rapid fire questions (lightning round)
Video of Episode
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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.
Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Speaker Bios:
Jan Hempstead: I’m a retired RN learning to live well with Ehlers Danlos syndrome, dysautonomia, hereditary alpha tryptasemia. This past year, I was diagnosed with rheumatoid arthritis, after being told by two specialists that I did not have RA. The pain from EDS and RA can be confusing at times but I am learning to differentiate between the two.
Cheryl Crow: Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Cures Act, which made sharing electronic health information the expected norm in health care
- Hereditary Alpha Tryptasemia and Hereditary Alpha Tryptasemia Syndrome FAQ
- Arthritis Life Face Sheet – Editable PDF where you can keep your condensed medical history, medication list and goals (FREE)
- 13 types of EDS – EDS society article link
- Episode 71 of Arthritis Life Podcast – all about POTS, Dysautonomia & EDS
- 90 degree angle knife – one example
- “Meditations” book by Marcus Aurelius
- Speaker links
- Jan’s Website: https://www.anotherdiagnosis.com/
- Jan’s Instagram handle: @rebtzen
- Cheryl’s Arthritis Life Pages:
- Arthritis Life website
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl:
I’m so happy today to have Jan Hempstead on the Arthritis Life Podcast. Welcome.
Jan:
Thank you for having me.
Cheryl:
Come on down. I get in game show mode. I get excited. Could you just let the listeners know real quick where you’re from and what is your relationship to arthritis?
Jan:
Sure. I am from upstate New York, which right now is absolutely gorgeous with the fall colors. I’m right near the capital of Albany, New York, and my relationship with arthritis is I was diagnosed with rheumatoid arthritis just about a year ago.
Cheryl:
So a very eventful time, mid-pandemic, or I guess we won’t know until later. At this point in time, it’s mid-pandemic. Yeah, 2021. Okay. I would love to know more about your experience getting diagnosed. We should say before you start that you are a nurse, too, so that you had a lot of medical training, which does change the experience, I think, to some degree in maybe some good ways and maybe some challenging ways.
Jan:
Yeah. I don’t know if it was a positive or a negative.
Cheryl:
Interesting.
Jan:
Yeah, My-
Cheryl:
Yeah-
Jan:
Go ahead.
Cheryl:
Yeah. I was just going to say, can you walk us through what were your first symptoms and how did you get the diagnosis?
Jan:
The diagnostic journey was very long and convoluted, partly because I have a few other comorbid conditions, and one of them is Ehlers-Danlos Syndrome. For those who aren’t familiar with that, it’s a connective tissue disease, and it affects not only your joints, but all connective tissue. Connective tissue is made up of collagen, which is the glue that holds us together. So not only did I already have a lot of joint pain and subluxation, which are partial dislocations and actual dislocations of my joint, but it affected all of my joints.
Jan:
So it was a confusing diagnosis anyway. It used to be considered rare, not so rare anymore. I was diagnosed with that a long, long time ago, about 30 years ago. So besides that condition, I had a few others. So I’m considered a complicated patient in the eyes of most physicians. But I started to notice other things that weren’t congruent with just Ehlers-Danlos Syndrome, EDS for short, and I was concerned about that.
Jan:
For instance, Ehlers-Danlos Syndrome, the type that I have, and there’s several different types, doesn’t typically affect the small joints in your fingers, at least not the type that I have. I was noticing much more pain and stiffness and swelling in my hands and in my feet. So I was concerned about that, first of all. I also was seeing a very amazing neurologist at Mayo Clinic for a very different reason. I also have autonomic dysfunction or dysautonomia.
Jan:
He was very, very thorough, and he ran a multitude of blood work. He said to me, “I think you have some type of autoimmune disease, and that’s what’s actually causing your dysautonomia. I’m not a rheumatologist,” he said, “but I think you’ve got some underlying autoimmune disease.” I had this huge list of blood tests, and he said, “These are abnormal. I don’t know what they mean, but they’re abnormal.” That was before the pandemic.
Jan:
I attempted to see two very well-known rheumatologists at major institutions. The first one saw me and said, “You have EDS. You do not have RA.”
Cheryl:
As if you can’t have both. You already knew you had EDS. Yeah.
Jan:
That’s basically what he said. He did physically examine me. One of the hallmarks of EDS is being very hypermobile, and so he’s bending all of my joints. It was very painful, but he’s bending all my joints. He said, “Yep, nope, you don’t have RA,” even though I had the markers and-
Cheryl:
The blood markers, wow.
Jan:
Yeah. For any of the listeners who also have RA, I had really high anti-CCP levels. Despite having that, he insisted I didn’t have RA. So it was really frustrating. So I went to another rheumatologist at a very large teaching medical center. This was actually during the pandemic, and so it was a telehealth visit. I had sent lots and lots of medical records to him, and he reviewed them. Over the telehealth video, he said, “You’re very, very complex, and I need to review all of this paperwork.” And then he never got back to me.
Jan:
A month went by. And then three months went by. Six months went by. I kept trying to contact him, and there was no response back.
Cheryl:
Wow.
Jan:
I emailed and portal messaged and phone called and never got a call back. This is really common, by the way, for patients who have multiple comorbid conditions. In my last role as an RN, I actually just retired in my volunteer role in December. I retired after eight years volunteering for a large nonprofit. But this is very common. We used to hear this all the time, that patients who have these complex comorbid conditions, it’s very difficult.
Jan:
Physicians don’t want to see us because we’re so complex, that it’s difficult to manage us. So I never heard back from that physician. And then of course, when the pandemic was at its peak, I didn’t want to go anywhere. Ultimately, one of the conditions that I have is a genetic trait. One of the physicians that I used to work with at this nonprofit also has this genetic trait, and it’s called hereditary alpha-tryptasemia.
Jan:
In communicating with her, she advised me that patients who have this, HAT is the acronym for it, hereditary alpha-tryptasemia, patients who have HAT often have autoimmune diseases, but they’re modified. HAT, the genetic trait, modifies the autoimmune diseases, so they don’t present exactly the same as patients who typically have the autoimmune disease. So she evaluated me. She got all my blood work, and she said, “You absolutely have RA.” So she began treating me.
Jan:
For my particular scenario, she said, “There are some of the biologics that work much better because of this genetic trait.” She started me on a biologic and, within six months, I felt like a very different person. So I was very, very grateful to her. It was a very long journey, and it’s very common for patients with comorbid conditions.
Cheryl:
I know, but you would think that having such a rich medical history yourself, you would think, “Wow, that should make it easier,” because you know how to present. Also, I would say I’m unhappily surprised that the first rheumatologist didn’t have the clinical reasoning. For me as an occupational therapist, I’m not as trained to the same number of years as a doctor, but we are trained in our master’s to be able to clinically reason our way through situations.
Cheryl:
If a patient has a documented hypermobility and we’re evaluating for rheumatoid arthritis, you would take that into account and say, “Well, rheumatoid arthritis, you’re going to get less. Usually, you’re going to get stiffness in the joints or less mobile.” But if you factor in the hypermobility, you should be able to look at the big picture. But again, I mean it’s Monday morning quarterback, and that’s not super helpful.
Cheryl:
But I’m saying that for people who are listening, it is sometimes your job to connect the dots even if you have no medical training, much less an RN. Did you find in your years being a patient educator, that that was kind of a surprise to a lot of patients? Because it was a surprise to me, I’m like, “I don’t want to do your job for you, but …”
Jan:
Initially, when I very first started, it was a surprise. But as the years went on, I found out that … What I actually taught the patients was, “You have to be your own advocate because no one else is going to advocate for you.” I was in the rare disease nonprofit, so it was common for physicians not to understand the rare disease world. Often, it was the patient bringing the information to the physician.
Jan:
It’s changed a little bit now because the particular rare disease world that I was in, it’s become much more aware. But the patients and certainly the nonprofit was out there educating, and that’s been very helpful. My frustration is after the fact. Just in the past year, I found a very large study at Dartmouth University that EDS and RA are fairly common to exist together. So I actually sent that study to that first rheumatologist that told me they can’t coexist. He did respond.
Cheryl:
So he believed that they couldn’t coexist?
Jan:
Yeah.
Cheryl:
Okay, okay. That’s what, because I already knew they could. So I was like, “Why would …” Okay. I mean-
Jan:
Yeah. He didn’t they would.
Cheryl:
So what did-
Jan:
So I sent him that study, and his response was, “Well, this is new information to me. But I didn’t think you had it anyway.”
Cheryl:
Wow. It’s like-
Jan:
I just said I wanted to educate him.
Cheryl:
No. I’ve had this idea for years that, first of all, I think it’s wonderful that you did that because it is doctors are human beings. Nurses are human beings. Physical therapists, OTs, we can all have blind spots or make mistakes or just not be perfect. So we have to account for that. I think the best providers are the ones that are open to being gently corrected or gently, “You know what?”
Cheryl:
Actually, I know a lot of women who are pregnant or family planning with rheumatoid arthritis. They have to say, “You know what? I just want to make sure you saw the guidelines from American College of Rheumatology were updated for the safety of medicines in pregnancy in 2020.” I know it’s impossible to keep up with everything, especially since 2020. Their lives are taken over by the pandemic. So you could have those conversations like, “Hey.”
Cheryl:
Because I’ve heard so many people come up to me and say, “Well, my doctor says I can’t take any medications on my pregnancy.” I said, “The doctor might be giving you specific medical advice for you. But if they’re saying that, in general, none of the medicines are considered safe, that’s outdated information. Here’s the guidelines to look at.” So you shouldn’t be ashamed or scared to bring up that with your doctor. Like you said beautifully, be your own advocate. Yeah.
Jan:
I also didn’t want another patient to go to him perhaps in my same scenario-
Cheryl:
Exactly.
Jan:
… not to be diagnosed. So I was just hoping I would save another patient to go through the same thing.
Cheryl:
So what did it feel like when you got that diagnosis? Emotionally, what was that like?
Jan:
My husband said to me, “Another diagnosis?” But actually for me, it was relief because my first thought was, “Why is this happening? Why am I having these symptoms that aren’t explained by my present situation?” So I was kind of relieved that perhaps something could be done about it, that maybe there was a medication or a lifestyle change that would improve what was happening.
Jan:
Not happy about having another diagnosis, because when you have as many as I have, it’s just like, “Oh no, one more thing to deal with.” But being an RN, I was thinking to myself, “All right. I’m solution-oriented, so what’s the solution for this? How are we going to manage it?” So I was kind of relieved.
Cheryl:
Yeah. I think when you get diagnosed with something that has multiple treatment options, even if due to your comorbidity some of those aren’t available to you, it can be … I mean I always definitely felt a relief as well in my diagnosis because there are other times you get diagnosed with something where it’s like, “We know why this is happening, unfortunately, but there’s no treatments for it.” And then you’re like, “Oh, boo.” But at least I’m not quote, unquote, “crazy” or it’s not like I’m just making it up, but you don’t have that sense of hope for a treatment.
Cheryl:
So I can totally see how those feelings would be swirling. But yeah, it is a lot. The theme of what we’re going to discuss today is what tips to manage multiple comorbidities. But first, I just wanted to ask briefly about what are … A lot of times people listen to the podcast. They’re trying to get ideas of what treatment/lifestyle factors help when you have fatigue and pain and other inflammation from rheumatoid arthritis.
Cheryl:
What are some of the tools? You mentioned the biologic, which is obviously that’s the cornerstone therapy for me as well. But what else has helped?
Jan:
I have a whole toolbox. I really do. First of all, I have a wonderful physical therapist and an occupational therapist. So I have both.
Cheryl:
Woohoo.
Jan:
Yeah. I have a toolbox, an actual physical toolbox on the side of my couch, and it’s filled with all my helpful little things. I can’t really, at times, separate my EDS from my RA because they’re both joint-related. But I use multiple modalities for both my pain and my fatigue. One of the things that’s been most difficult for me, especially with the fatigue, is learning to pace myself because, first of all, I was an incredibly physically fit athletic runner.
Jan:
I went from being nonstop movement, and I used to run six miles a day, to barely being able to walk. When I was a nurse in the hospital, I worked 12-hour shifts. It was nonstop, and it was go, go, go, go, go. You’d never sit down. I mean getting a break was near impossible. So it’s a huge, massive lifestyle change. Thankfully, I say each thing came very gradually because each diagnosis was along the way.
Jan:
By the time I got to RA, I was already volunteering for the nonprofit that was from my home, and I was able to sit and do that work. But even the pacing now, my mind is incredibly active and I want to do so much that I have to constantly remind myself that it’s okay to stop and rest. I literally set my Apple Watch timers to sit and rest, and that’s what I do. I have to sit and take the time to rest, put my feet up.
Jan:
I do use meditation a lot, and that’s been incredibly helpful. That’s been a rejuvenator for me for my fatigue as well. I’m a poor sleeper and have been since I was a little kid, so that’s not ever changed. So my rest time is really, really important, especially for the fatigue. That was one of the most surprising things for RA is to find out that fatigue was part of it and that’s why I was so absolutely wiped out. I mean not even make it to midday without having to sit down and put my feet up was astounding to me. So again, spending my time to actually make myself stop and rest.
Cheryl:
Yeah. That’s a really helpful one because I always say with fatigue that fatigue is much easier to prevent than it is to reduce once it’s there. So you want to do those little tiny rest breaks. It’s kind of funny because in the literature on exercise and rheumatoid arthritis, some people are looking at the concept of quote, unquote, “exercise snacks,” little bursts of exercise throughout the day rather than one big burst of exercise, so five minutes every few hours of exercise versus one hour uninterrupted.
Cheryl:
I think it’s almost the same for me with fatigue because if I can schedule in those rest breaks, whether I even just close my eyes and not even formally meditate, just listen to a song or just have actually no sensory stimulation for five minutes, and that can be great. I don’t know if you find with dysautonomia, but just the act of laying down for five to 10 minutes, even if I’m not resting, even if I’m watching a show or something, my mind isn’t resting, but my body’s horizontal, that makes a huge difference.
Jan:
Oh, yeah. Massively huge. I have very low blood pressure from the dysautonomia and low heart rate, both of them. So for me, to get my legs up is really important. I guess maybe part of my work ethic from all the years of being a nurse, I push, push, push, push myself all the time. So I really found that I have to literally schedule the time into rest, otherwise I don’t. But then I pay for it later, and that’s what I call my crash. I crash if I don’t. So I have to schedule that time in.
Jan:
By the same token, that exercise is critically important. I do exactly what you said. I do the little mini exercises. I have strengthening exercises. Because of the dysautonomia, I don’t do a lot of upright exercising. I have a recumbent bike, so I use the recumbent bike. I have the THERABANDs. Like I said, I have a wonderful PT who works me through my exercises. So I have brief exercises that I do, and I do them periodically throughout the day, typically after my rest break.
Cheryl:
Yeah, that makes sense.
Jan:
Yeah, after I’ve recouped for a little bit. Music is another thing that I utilize a lot. I’ll put my earbuds in. I’ll play the music, and I’ll exercise to the music because it pumps me up and rejuvenates me a little bit. So those are some really good tools that I use that are helpful.
Cheryl:
In our group, the Rheum to THRIVE Group, the most recent one, we had quite a few more than usual people who have both EDS and rheumatoid arthritis. Is there anything that you have found, maybe compression gloves or external braces and such that … Yeah, okay. Yeah. You’re wearing them. Oh yeah. I was going to say I have this constant rotation. I’m taking them off, putting them back on, changing … The problem is I have too many pairs, so that I just leave them in different rooms. But yeah. What are some of those things that help?
Jan:
These are helpful for not only for RA, but for EDS because I do sleep with them at night as well because my hands swell so much at night that I can hardly move them in the morning. So I always sleep with a pair at night, and I wear them on and off throughout the day. The reason they’re helpful for both RA and EDS is because the compression helps with the joint subluxation with the EDS, but it also helps with the pain for the RA. So I have found these to be absolutely amazing. I have so many pairs.
Cheryl:
I know.
Jan:
I have multiple colors. I love them.
Cheryl:
Is that the Grace & Able?
Jan:
It is the Grace & Able.
Cheryl:
Shout out to Sarah. Yeah, she’s-
Jan:
Shout out to Sarah, yeah. I have, I think, every color-
Cheryl:
She’s awesome.
Jan:
Every color that she has, I have a pair of them.
Cheryl:
That’s amazing.
Jan:
I absolutely love them. Also, because I had dysautonomia, my hands are always freezing. I have very poor-
Cheryl:
Me, too.
Jan:
Yeah. So they’re wonderful. I love them. I have found these to be one of the most helpful tools for both EDS and for RA. Before I started wearing these, I would wake up in the morning and my hands would be so swollen that I couldn’t even close my hands. So this has been incredibly helpful.
Cheryl:
Awesome. I’m sure you’ve already given your feedback. If you don’t know, when I say Sarah, Sarah Dillingham, she’s actually the very first guest ever on Arthritis Life Podcast back when it was a talk show. I interviewed her in 2019 for my talk show, which turned into a podcast because I guess a podcast is a nonvisual talk show, right? But that was back when I thought I’d be doing all in-person interviews. But anyway, she happens to live about 45 minutes from me, and we met at an Arthritis Foundation event.
Cheryl:
We ended up doing the Arthritis Life Extravaganza together earlier this year. But anyway, yeah, I love the mission of Grace & Able, which is to make comfortable, aesthetically-pleasing compression gloves which, for some reason, a lot of medical device people have not prioritized comfort or style. My plum ones are my favorite. The background has it looking weird. But yeah. The compression is great.
Cheryl:
Something that I learned in occupational therapy school, but that it really was one thing to learn it, another thing experiencing it was that compression can kind of, for lack of a better word, scramble the pain signal from your hands up to your brain because it’s too many things at once. It’s drowning out the pain. I’m now focusing on processing the sensation of compression. It’s so unintuitive because you would think, well, if something hurts, why would I want to put more pressure on it?
Cheryl:
There are some people with fibromyalgia who say that it’s too much, that they don’t like it. Again, no tool in anyone’s toolbox is a guarantee for everyone, except maybe taking a slow deep breath is kind of a universal helpful tool for stress. But even, I guess, some people maybe that have costochondritis, no, I don’t want to take a slow breath that that’s going to hurt my costochondritis. But yeah, the point being that a lot of people with rheumatoid arthritis and EDS, separately, love the compression gloves.
Jan:
Compression also helps with proprioception for EDS patients. I mean I wear compression leggings as well for that reason and for the dysautonomia. But I love the compression. I find it incredibly helpful.
Cheryl:
Yeah. Proprioception is your body awareness, for those who don’t know. Actually, I have this theory that it is disrupted in rheumatoid arthritis as well, but I don’t have data to support that other than … Actually, I think there is some data because I know I found an article that was Proprioceptive Retraining for RA because proprioceptors are located in the joints. So if you have damage to the joints, it’s understandable that you would have … They’re in the joints of the tendon.
Cheryl:
Before having RA, I was extremely, extremely athletic, played college soccer at Vassar, upstate New York, was getting free tours every fall of beautiful leaves. I never dropped things. I never bumped into things. I was really good at art and everything, fine motor stuff. I definitely have found over the 20 years of having RA, that proprioception’s gotten worse. I’m dropping things, breaking things, bumping into things, hitting my head on things. So maybe that’s more attention.
Cheryl:
It’s hard to disentangle attention from quote, unquote, “clumsiness” sometimes. But yeah, proprioception is one of the hidden senses along, with vestibular and interoception. But is there any other tools? Do you use any braces or?
Jan:
I do. But I use them mainly for my EDS. I have full leg braces I wear for my EDS. I do use wrist braces. I have Grace & Able’s wrist brace.
Cheryl:
Oh, nice. Yeah.
Jan:
Yeah. I use that as well because my wrists aren’t involved as well. I don’t use any ankle braces, but only because I wear full KFO braces. So those are knee, ankle, foot braces-
Cheryl:
Yeah, and-
Jan:
… that go right into my shoes.
Cheryl:
Is your EDS type the hypermobile?
Jan:
It is. It is.
Cheryl:
That’s what I assumed. Sorry. But I was like, “Wait, let’s make sure we say that out loud.” Yeah.
Jan:
It is. It’s the hypermobile type. For whatever reason, and we’re not sure why, it might be related to the hereditary alpha-tryptasemia genetic trait. Mine’s pretty advanced, so I have daily dislocations. That’s the reason that I wear the braces.
Cheryl:
Sorry to nerd out. Not sorry to you. I know you don’t mind nerding out-
Jan:
No.
Cheryl:
… but people listening. But it was funny. I literally was just driving in our neighborhood looking at, because it’s Halloween time, looking at these skeletons hanging in people’s yards, just nice, not morbid things. No, but I was thinking, in occupational therapy school, I really went to occupational therapy school to help people be able to function better in their daily lives. I wasn’t as much interested in the kinesiology and anatomy and physiology. I was like, “I want to learn just enough about that to be able to help people more and help kids.”
Cheryl:
At the time, I thought what I was going to do is work with children with developmental differences and neurological differences and physical disabilities, like CP, cerebral palsy, and I did end up doing that. But anyway, point being, I remember this aha moment. One of our professors was talking about how literally your skeleton is just held up by … I know it sounds so obvious. But it’s like gravity is acting on us all the time. So if we don’t have that tone in our muscles and our connective tissues and everything, it will fall down.
Cheryl:
It’s really obvious if you see someone who had a stroke because they don’t have the innervation to their muscles. Just if the person’s shoulder, you see it’s one side of the body is not affected in a stroke. The other side is. So it’s like you have a pre and post comparison. You see one shoulder is just looking quote, unquote, “normal,” the other one is just hanging. In your case, it’s not from a stroke, but it’s from the EDS. But it just blows my mind, to be honest, sometimes thinking that that’s all that’s holding us up.
Jan:
Hence the braces, because I was falling all the time.
Cheryl:
Oh, yeah. Thank you. Thank you for tying that together. You need this. If your body isn’t maintaining, whether it’s the muscle tone or the connective tissue, not strength, but whatever the right word is, again, I learned just enough to be dangerous. But yeah.
Jan:
Well, the way that the EDS specialist explained it to me is with EDS, most people’s muscles, tendons, and ligaments, they’re collagen-based. So they connect the bone to bone, and they hold them in place. But in someone with EDS, he said, “Think of it like this way. There’s a rubber band. The rubber band goes out, and it comes right back in. It goes out, and it comes right back in. But the patient with EDS, it goes out, and it doesn’t come back in or it goes out a little bit and comes back in just a little. Each time it goes out, it comes back in less and less and less.”
Jan:
So for an EDS patient, the more stretched, it just keeps staying out and out and out and out further until there’s no more elasticity left at all because the collagen is defective. So eventually, and of course the older you get, I’m 66, so the older you get, the less elasticity you have. So my legs have much less bounce back. My knees were dislocating. My ankles were dislocating. My hips weren’t staying where they needed to stay. So I was just falling all the time. But these braces are a blessing, and they allow me to walk without falling, most often.
Cheryl:
It’s really just providing the-
Jan:
I won’t say all the time.
Cheryl:
Yeah, I might fall for other reasons. Yeah, no. But yeah, they provide that tension to keep the joints in place. Forgive my ignorance, but do they ever do just full joint replacements? Would that help for knees and hips or for it, or no?
Jan:
Well, that helps the actual bone, but it doesn’t do anything for the muscles or the tendons.
Cheryl:
Right, right.
Jan:
So it doesn’t really hold that in place. My dad had EDS and my dad had joint replacements, but he still-
Cheryl:
He did?
Jan:
Yeah.
Cheryl:
They need to figure out how to, not just the bone replacement, but replace the connective tissue.
Jan:
They do sometimes do cadaver replacements of some of the ligaments. But the attachment replacements aren’t always very successful, and they don’t last very long. I’ve had 19 orthopedic surgeries, and none of them have been successful. They last for six months to a year.
Cheryl:
I’m so sorry.
Jan:
I’ve had my shoulder done-
Cheryl:
I just realized I was that person that’s like, “Have you tried this?” I just was curious. Sorry. But yeah. 19-
Jan:
Which is why RA is just a complicating factor because RA, as you know, complicates the joint issues even more. So hopefully, being on a JAK inhibitor will prevent further destruction because I certainly don’t want to have any joint replacements.
Cheryl:
No, no, and they’re becoming so much less common. I have friends who are certified hand therapists who work in hand surgery and hand therapy clinics and they said, “We used to see so many patients with rheumatoid arthritis with joint replacement surgeries in the knuckles and in the hand.” They’re like, “We just don’t see any of them anymore with the current medications.” So that’s a good development.
Cheryl:
But still obviously, I understand your fear. I do want to get into this concept of having comorbidities. That’s just a fancy word for multiple diagnoses, multiple conditions, multiple disease processes. It can be really stressful. I think when I first became a chronic illness patient at 19, 20 years old, I had this idea that all my doctors were in the same place somehow, even though they physically weren’t. I somehow was like, “Well, they’ll talk to each other.”
Cheryl:
Because if you’re a student, you’re used to everyone … You go to school and your professors might talk to each other. High school, everyone’s in the same cafeteria. But it took me a few years. I was like, “These people, the right hand does not talk to the left hand. My gastroenterologist doesn’t talk to the rheumatologist. They don’t talk to the …” Anyway, but that’s my experience. But yeah. What have been some of the unique challenges, I guess that could be the whole episode, but some of the challenges of having multiple and being labeled as a quote, unquote, “complex patient?”
Jan:
There are multiple challenges. And again, one of the things being a nurse educator, one of the things that I learned very early on is that specialists don’t talk to other specialists. If you have a really good primary care physician, and it’s tougher and tougher to get one, hopefully your primary care can help coordinate your care. But again, that’s rare. But specialists don’t talk to other specialists. Because some of the conditions I have are considered rare, I don’t even go to the same health systems for my specialty care.
Jan:
I have some in Boston, Massachusetts. I have some in Scottsdale, Arizona. I have one in University of Mississippi. I have some in New York State. I’m now going to be going to one in the University of Pittsburgh. To coordinate the care from all of those specialties is nearly impossible. So what’s incredibly difficult is to get those specialists to talk to each other. The one thing that I have learned, thank goodness for the Cures Act.
Jan:
For those of you who don’t know what the Cures Act is, it’s a federal act that states that the physicians have to upload all of your information into your portal. Anyone that doesn’t have a portal, if you’re just not comfortable doing the portal, make sure that you have your physician put all of your information into the portal and print it out.
Cheryl:
The portal’s an online-
Jan:
Online portal, yeah.
Cheryl:
… site where you can log in. You get your own login. I have my own login for each place. I have my primary care is at one facility. My rheumatologist and podiatrist and a couple others are at another facility. So usually, there’s one login per organization. There’s a dermatologist. Yeah. You’re so right. A lot of people don’t know that.
Jan:
Medicine is like a silo. Each specialist is in their own little silo, and they don’t speak to each other. I don’t think it’s for any ill intent. I think they just are all so incredibly overworked. I mean I’m in the medical profession, so I understand. Even when I worked on the unit, you literally have so many patients to take care of, you can barely breathe. So you do the best that you can with what your resources are, and you move on.
Jan:
I think everyone feels that crunch, that pinch, and they do the best that they can do. Of course, there’s good, better, and best, and there’s some not so good. So I think as a patient advocate, what I say all the time is go in your portal, print that information, and bring it to your specialist. “Here’s what Dr. So-and-so said. I wanted you to have this information.” Make it brief. Don’t bring 50 pages because they’re not going to read it. Bring your last report. Bring your last set of labs.
Jan:
If you’re in a different system, you need to bring the labs. But if you’re in the same system, you don’t need to bring the labs, but bring the report because they’re not going to read Dr. So-and-so’s report. So when I go to Boston, I bring my report from Mayo in Arizona. When I go to University of Mississippi, I bring my report from Boston. I think it’s so important to share that information. I have a geneticist who does the most thorough comprehensive report, and I bring his report to every single one of my physicians. They all are very appreciative of that.
Jan:
I only have one kidney, and I’m in renal failure with the other kidney. So when I went to my nephrologist the other day, I brought my geneticist report to him and he was incredibly grateful because he wants to be kept apprised of what’s going on with the rest of my body, not just my kidney. So I think it’s important to just share that information. It’s very, very difficult.
Cheryl:
How do you keep track of it all? Do you keep digital copies or do you have binders?
Jan:
I used to do the paper thing, but I have so many physicians-
Cheryl:
I know.
Jan:
… it got overwhelming. So I just have a list of all of my specialists and all of their contact information, and then everything’s in their portals. Then I have the log in credential to the portal.
Cheryl:
Yeah, you don’t want to make a system that’s harder than it has to be, for sure.
Jan:
Yeah. No, no, no, no.
Cheryl:
It’s already in there. That makes total sense.
Jan:
Yeah, it’s in there. It’s in there.
Cheryl:
I just want to plug super, super quickly because I think people have told me it’s helpful. I made this two-page editable PDF thing that I call the face sheet, which is a term that they use in healthcare sometimes, especially in inpatient. But it’s a quick, at-a-glance, this is the person’s picture. This is what their date of birth, their diagnoses. I made just a template that other people, you can download and use yourself and also put because, of course, the occupational therapist to me, what’s important to me.
Cheryl:
What are my goals? What am I trying to achieve with my health? I want to be able to coach my son’s soccer. Those are my realistic goals, and that’s realistic for me right now. It wasn’t five years ago, so things change. But it’s been helpful for me because when I meet especially a new provider, I’m able to say … First of all, it’s visually pleasing. It’s not super colorful, but it looks a little nicer than most medical forms.
Cheryl:
It has my current medications and dosage, greatest hits of my medical history of had a baby with a C-section in 2014. It just takes up two pages, and that way you can have it even for yourself because I also have some of my medications are Walgreens. Some of them are specialty mail order. Some of them are from X doctor. Some are from Y. So you have a list of your current medications, current dosages. So that’s another little tip of organization because it is …
Cheryl:
A lot of people say this, but I’ll say it again, being a chronic illness patient and especially, in your case, a rare disease patient with multiple comorbidities, it is a full-time job just managing your care, managing the logistics of your care, not just the actual physical, your physical.
Jan:
No, that is very true. That is very true. To your point, I do carry a separate list of just my medications, my allergies, my diagnoses, and my surgeries. That takes up one whole sheet, just that, because I’m on so many meds. I have so many allergies and surgeries and diagnoses. But I keep multiple copies because every time I go to a physician, my meds change almost on a monthly basis. So I just have to keep updating them, and then I carry them with me.
Cheryl:
Sometimes I think, “Oh my gosh, I have to give this to my husband because if there was an emergency.” I got in a car accident in 2016, and the biggest miracle wasn’t that I survived, it was my husband answered the phone because when I was sitting there in total shock, my hands were just shaking. I called him. But I was like, “Yeah, he wouldn’t know,” because he’s not as involved in my care to the degree of knowing. He knows the name of my medication. He could look in the fridge to know what one of them is.
Cheryl:
He knows where I store the medications. He doesn’t know all of it just because it’s just not something that I’m like, “Oh, did I remind you that I’m on 25 milligrams …” That’s not a conversation that comes up. So making sure other people in your life have a copy of that is also really good.
Jan:
Very important, yeah.
Cheryl:
And then you seem very level-headed, and I know you. You mentioned earlier that you use meditation. But what are some of the other things that have helped you cope emotionally? Because it’s a lot to have to handle all this.
Jan:
Well, a few things. First of all, I have a therapist. My geneticist, one of the first things he said when we started seeing him … My kids have some of the diseases that I have. They both have kids. My son is 36, and my daughter’s 42. They don’t like when I call them kids.
Cheryl:
They’re your kids forever.
Jan:
They’re my kids forever. They both have Ehlers-Danlos Syndrome, and they have dysautonomia as well. When we started seeing the geneticist, one of the first things he said is, “I’m going to strongly, and I’m using the word strongly, recommend that you see a therapist. Anyone with a chronic illness needs to see a therapist.”
Cheryl:
Good for them to advocate for therapy.
Jan:
Oh, he’s very, very adamant about it, so we do. I have a therapist that I speak to. This is what he said. He goes, “I don’t care how much support you have, how many family members you have that are supportive or how many friends you have.” He said, “You need a third party, completely impartial, who’s professionally trained to deal with this to help you through this kind of mess.” So we do. We do. We have a therapist. None of us have the same, but-
Cheryl:
Oh, I was going to say, “Oh, you share one, that’s cool.”
Jan:
No, no, no, no, no, because my kids don’t live in the same town that I live in.
Cheryl:
Oh, yeah. Okay. Yeah.
Jan:
We actually all live in different towns. So I speak to a therapist on a regular basis, who’s been wonderful. I’ve been a long-term meditator for many, many years. I use deep breathing, many different techniques for stress relief. I am a studier of philosophy, in particular one called stoicism, that I’ve been practicing for a couple of years now, which is very helpful. I have honestly never really been stressed about my health. My family is. I’m not. So I’ve been very lucky.
Cheryl:
How old were you when you were diagnosed with your first condition?
Jan:
Let’s see. My son was two, so I was 32 when I was diagnosed with EDS. I had been sick for most of my life, but not diagnosed. I had had many, many instances. By then, I had already had probably six or seven orthopedic surgeries, but they were, “We don’t know why-“
Cheryl:
What was the explanation from the doc? “Oh, we don’t know.”
Jan:
My orthopedic surgeon used to say, “You’re a real loosey goosey.”
Cheryl:
Oh, my God. It’s like how there’s this DSM diagnosis, Diagnostic Statistical Manual, that’s what DSM is, called developmental coordination disorder, also known as dyspraxia, which used to be known as clumsy child Syndrome, which I mean I kind of like the name clumsy child Syndrome because it’s adorable. But yeah, no, I mean most kids don’t … I don’t think the word, clumsy, is that pejorative because it kind of describes the Syndrome. But yeah, it’s developmental coordination disorder.
Cheryl:
But yeah, so I think that could be along with it, loosey goosey Syndrome. When did EDS become a disorder or?
Jan:
Oh, I don’t remember when it …
Cheryl:
Interesting.
Jan:
It was described way back, way, way back.
Cheryl:
Yeah. Okay. Okay. Sorry. I’m fascinated by that.
Jan:
It wasn’t well-known for a while. I joined the Ehlers-Danlos Society in the ’80s, so I mean they knew about it then. But then it was considered really rare.
Cheryl:
The 13 subtypes were not even described until 2017.
Jan:
Yes. it’s become much more known as time has going on. They told me I had type three back in the ’80s. There were numbers of types, and I think there were only eight types back then.
Cheryl:
Okay, okay.
Jan:
Yeah.
Cheryl:
Okay. Wow. Okay, sorry. I’m getting us off track, but I’m putting a link in the show notes now as we speak to make sure to give people more info because it is very … I mean I could say almost confidently someone listening to this who has RA probably also has EDS, Ehlers-Danlos Syndrome, and hadn’t been diagnosed yet. So stoicism philosophy, okay. Was your son your second child or your first child? Sorry.
Jan:
My son was my second child. My daughter had had a couple of elbow dislocations when she was small, but all they kept saying to me is, “It’s just nursemaid’s elbow. Don’t worry about it.”
Cheryl:
That is somewhat common when putting kids in … I remember learning about that in school, putting kids in their jackets, you dislocate their elbow.
Jan:
Yeah. Except my son had so many patella dislocations, and those are kneecap dislocations, he would fall. He would walk. His kneecaps would just pop off.
Cheryl:
Oh, that’s not-
Jan:
He would just drop on the floor. But he was such a happy kid. I would slide it back on, and he would get back up and walk again. But I took him to our pediatrician and she said, “There’s something going on here.” He had had multiple elbow dislocations, too. An orthopedic surgeon was able to identify … The orthopedic surgeon looked at my son and then asked me to come over. he looked in my eyes and he said, “You all have a collagen defect. You have some kind of connective tissue disorder.”
Jan:
It turns out the whites of our eyes, the sclera were blue, which is common in a connective tissue disorder because the white is supposed to be white and ours are blue because you can see through into the eye. You can see the back of the eye. It makes it look blue.
Cheryl:
Oh my gosh. That’s a good quick test.
Jan:
Not everybody. Not everybody has it, but for some people. But he was a very, very astute local orthopedic surgeon. He sent us down to the Joint Disease Hospital in Manhattan because we lived in upstate New York where there’s not much.
Cheryl:
Oh my gosh.
Jan:
They diagnosed us. They put us through a whole panel-
Cheryl:
So you said-
Jan:
… my son, my daughter, and myself. It turns out my twin has it. My brother has it, and most of my twin’s kids have it.
Cheryl:
Wow. Is your twin identical?
Jan:
Not at all.
Cheryl:
Okay. Oh, okay.
Jan:
Looks nothing like me.
Cheryl:
Okay. Okay. I need to just circle back to something. You said you don’t feel stressed about your health. Do you feel stressed about your children’s health?
Jan:
I feel more stressed about my children only because-
Cheryl:
I feel like I’m interrogating you. Sorry. I’m just going to be like, “So Jan, where were you on the night of October 1st? Were you stressed?” No.
Jan:
… only because they were not as diligent about caring for themselves as I am. My daughter is now because she actually just went to a rheumatologist and they think she has ankylosing spondylitis. So I’m concerned about this whole connection between EDs and autoimmune diseases. So she is being presently seen by the same rheumatologist that I see because I was concerned that she had some kind of autoimmune disease displaying some kind of symptoms. My son is 36 and invincible.
Cheryl:
In his head or in real life?
Jan:
In his head.
Cheryl:
Oh, okay.
Jan:
In his head. He knows he has EDS, and he’s has multiple dislocations. He is very, very muscular. He has a very demanding physical job. So he has developed very strong muscles, and it mostly prevents his dislocations, except when he’s occasionally doing something overly physical, and then he has the dislocation. I can put my own dislocations back in now, but I don’t have the muscles he has.
Jan:
He requires sedation and physician assistance to put his dislocations back. So he’s not onboard with the going to all the medical care that my daughter and I do. So I’m more concerned about him than I am about my daughter.
Cheryl:
Having more stress about your kids than yourself is a pretty common thing in life. I just was curious because It’s a rare person living with so many serious conditions that is able to … I’m trying not to say this in a … But you are managing your stress in a way that is not causing a lot of stress, which is unusual.
Jan:
Yeah. Well, you have to. You just-
Cheryl:
I speak as a stressed person. No.
Jan:
You have to know me better. My nickname is Zen Jan.
Cheryl:
Zen Jan. Yeah, yeah, I know. Yeah. Yeah. So you were already zen at 32 when you had these? Okay.
Jan:
No, no, not at 32. No, no.
Cheryl:
Oh, okay. You weren’t?
Jan:
Back then I wasn’t. I think it came more with age and lots of challenges. As the challenges of life came, I became more and more calm and tranquil. Again, I’ve been meditating for decades, so I think that has certainly helped.
Cheryl:
Is there a resource? If somebody’s listening to this like, “You know what? I keep hearing about meditation. I’ve been on the fence about it.” Is there a book or website or resource you would recommend for beginners? I know you had a stoicism book, too, that you recommended once in the group.
Jan:
Oh, you probably can’t see this.
Cheryl:
I see it.
Jan:
Marcus Aurelius Meditations.
Cheryl:
Okay.
Jan:
That’s one of them. I mean I probably have 15 of them, but …
Cheryl:
Okay. No, that’s great. That’s great. Just a good starting point because there can be some connotations like, “I can’t meditate because I’m too high energy.” I’m saying that as something I used to say. It’s like if you’re somebody whose mind jumps around a lot and all that, you’re the best person to try meditating because it will help you.
Jan:
I took a class many years ago on mindfulness meditation. One of the things that they taught me was you don’t have to have a blank mind. It’s not about getting your mind free of thoughts or having a blank mind. It’s just about sitting and focusing on your breath. Let your thoughts come and go. First of all, just a little share here, I have ADHD. I don’t take meds for it anymore, so I’ve learned to use my breathing and my meditation to stay calm.
Jan:
If I didn’t have the meditation, I think … Now, I can tell you I still get distracted. I haven’t cured the distraction of ADHD, but I have definitely used it to be calm and not to be all over the place.
Cheryl:
That’s super helpful. I’m sure that a lot of people listening have that.
Jan:
Yeah, for sure. There’s no wrong or right way to do meditation. I used to use guided meditations. Whatever works. There’s no right or wrong. There really isn’t.
Cheryl:
Well, I’m sure you’ve inspired some people to meditate, listening to this. The other thing I wanted to ask you about is community. What role has that played on your journey with all this? Obviously, you’re coping really well on your own, but …
Jan:
Usually. It’s helped, usually. I mean. One of the reasons that I joined your Rheum to THRIVE group was for community. Although I did learn a huge amount about RA being an RN, I could have just researched it on my own and found it out. But having that sense of community, being with other people who live what you live is so rich and amazing because other people don’t understand what you’re going through. Unless you actually live it, unless you walk in those shoes, it’s not the same.
Jan:
So having that sense of community is so, so, so important. When I was with the nonprofit, we always had support groups. I used to moderate the support groups, and people would sometimes sob and say, “I didn’t know anybody else felt like me.” So it’s so important for people to get together and have that sense of community and know what it’s like to feel the same way. Of course, we’re all different. We all have different personalities. We all feel differently.
Jan:
But the bottom core is we all suffer the same. But we all rejoice the same, and we all feel the same. So it’s just so important to be with other people who can understand. It’s the understanding.
Cheryl:
Yeah, absolutely. It’s almost like when you hear someone talk about what they’ve been through and you’ve been through that same thing, you look at that person and they survived it. They survived, therefore I can survive, too. But for some reason, just saying to yourself on your own, “I know I can survive this. I will get through it,” it’s different than … It’s that old saying in writing, show don’t tell.
Cheryl:
It’s like someone telling you, “You can get through this,” is different than you seeing she got through that or he got through that. They are on the other side or they’re in the thick of it and they’re managing to thrive as best that they can in the moment or just survive because that’s what they need in the moment. Honestly, I first started groups because I’ve always loved groups, but also I feel like one-on-one is too slow.
Cheryl:
I want to have a bigger impact, and I also want to protect my energy as somebody also living with a fatiguing illness. I’m like, “Okay, if I do groups, I can help 20 people in one hour versus 20 hours to help 20 people one-on-one.” But it has had much more impact than I even thought it could because of that sense of I can just see people’s shoulders relaxing and the sense of relief that you’re not the only one or you’re not alone. So sorry, just on my soapbox now.
Jan:
Plus to share. Plus to share. Sometimes people will share things and you’ll go, “Oh, I never thought of that.”
Cheryl:
Yeah. The sharing the specifics, sharing tips-
Jan:
Yeah.
Cheryl:
Yeah, that’s true. That’s not just sharing our emotions and the emotional ability. That’s super helpful. No one can keep up with the news and the latest developments with the vaccines and all that during COVID. “Oh hey, did you see that this came out? Or did you ask your doctor about that?” And again, I know it’s not a forum for medical advice, but it’s more like a information sharing and encouragement.
Cheryl:
There was definitely a few times where people were like, “Oh, I’m so nervous to go to ask my doctor. I want to advocate for myself, but I don’t know.” Everyone’s like, “You can do it.” Aggressive encouragement is needed-
Jan:
Yeah, that’s helpful.
Cheryl:
Yeah, yeah, yeah. It’s funny because rheumatoid arthritis isn’t considered a rare condition because it’s about one in 100, I believe. I don’t know. I always forget if it’s one in 100 women or one in 100 adults. I think it’s more rare for men than women, but point being it’s not a rare officially condition. But it can feel when you’re young and you don’t know anyone else in your community or regardless of what your age is, actually.
Cheryl:
I’m just thinking about the things people have said to me like, “I got diagnosed with this thing that seems really overwhelming. I googled it and it looked like people that were totally older than me. What is my life going to be like?” Now they can see a breadth of people living different kinds of life. Some people in the Rheum to THRIVE group are on disability. Some people are retired. Some people are working full-time.. Some people’s disease is in remission. Some is super active and uncontrolled.
Cheryl:
It’s just figuring out ways that each person can improve their quality of life and is really helpful and ways to just sit with the present moment. Be able to sit with this is what we’re going through and it might get better in the future. It might not, but we’ll get through it.
Jan:
And we’re here together.
Cheryl:
I mean each person shares so much as well. It’s one of those things, like that cliché that teachers say, “I learned more from you than you learned from me.” But yeah, it really is a special thing. So thank you for sharing. I want to be sensitive of your time, but I do have some … I just started a new segment that I’m calling rapid-fire questions or lightning round, although in true me fashion, these could each be a long discussion.
Cheryl:
But what would be your best quick tip for somebody who’s newly diagnosed, who just got their diagnosis and is like, “Oh my gosh,” what would you say to that or word of encouragement?
Jan:
I would say, well, first of all, join Room to THRIVE because you’ll learn so much and have support. I think it’s really important to reach out for support. I think that’s the most critical thing, so you don’t feel alone.
Cheryl:
Yeah. Yep. I was so stubborn. I was like, “I can do this. I got this. I can do this on my own.” No, it was so much easier with a group, with support.
Jan:
It is.
Cheryl:
Do you have a favorite arthritis gadget or tool in your toolbox? I guess we kind of already covered this a little bit, but …
Jan:
Well, we did, except the one thing I didn’t mention is I am Italian and I love to cook. I think my favorite tools are my kitchen gadgets because I have a lot of … Actually, I got a lot of them from your website, but-
Cheryl:
Awesome.
Jan:
I did. I have the, I don’t know what you call it, it’s the right-angle knife.
Cheryl:
Yeah. I just call it the handle knife, but there is an official name for it. Yeah.
Jan:
Yeah. There is, and I can’t remember what it’s called.
Cheryl:
90-degree angle knife.
Jan:
Yeah, 90-degree angle knife. I have that, and I use that every single time I’m cooking. Love that.
Cheryl:
It’s so helpful.
Jan:
I could not hold the other one at all. It was so painful. This one is so easy to hold, so I use that.
Cheryl:
That’s one of my favorites, too.
Jan:
Yeah, I love that. I mean I could go on and on about the kitchen gadgets. But I would say my kitchen gadgets.
Cheryl:
That’s one of the lesser known ones, too, so I’m glad you mentioned it.
Jan:
Oh, I love that one.
Cheryl:
Yeah. I did a video about it for Global Healthy Living Foundation, which is the parent nonprofit of CreakyJoints. And then a bunch of chefs were critiquing. I was like, “I’m not a chef. I’m just showing you a different knife.” It was so hilarious. “But why are you using that knife for bread?” I’m like, “I’m just demonstrating it on bread.” “It’s not a bread knife.” I’m like, “It’s okay. I’m showing the fact that it’s a 90-degree angle knife.” Anyway, so do you have a favorite book or show or movie you have watched recently?
Jan:
Well, Marcus Aurelius’ Meditations is my favorite book, and I still read it every day. It’s funny. When I’m really exhausted and I just want to kind of relax and chill, what I’m doing is re-watching all of the old ER shows=
Cheryl:
Oh, wow.
Jan:
… because once a nurse, always a nurse, and I’m kind of an adrenaline junkie.
Cheryl:
Wow.
Jan:
I don’t know if you know this. ER was written by a physician. Michael Crichton was a physician.
Cheryl:
What?
Jan:
It is the most true-to-life, medically accurate medical show ever written. So when I want to get my medical thrills, I sit down, put my earbuds in, put on my Hulu, and watch the ER reruns.
Cheryl:
I didn’t know. I knew that they had doctors on staff writing, but I didn’t know-
Jan:
Yeah. That one was written by a doctor.
Cheryl:
Written by a doctor. Wow. Okay. Awesome.
Jan:
So it’s very medically accurate.
Cheryl:
Okay. Oh, that’s so cool. I need to watch it. I watched a lot of Dr. House, I didn’t watch as much ER. I know Dr. House is not very realistic in terms of the amount of time spent per patient.
Jan:
Yeah. This was very accurate. My husband laughs because I’ll sometimes get so into it, I’ll watch three shows in a row.
Cheryl:
You crazy, girl. No. Do you have a favorite mantra or inspirational saying or quote?
Jan:
It’s hanging right across from me. It says, “I choose tranquility and peace of mind.”
Cheryl:
I love it. I’m writing this down. Sorry. And then what is something that’s bringing you joy right now?
Jan:
The autumn leaves. I absolutely love them. It is so gorgeous. The colors are brilliant and bright.
Cheryl:
I need to visit. I’m inviting myself.
Jan:
Absolutely beautiful. We’re kind of at peak. Well, we’re a little pre-peak, but it is just so beautiful no matter where you look, the bright, bright reds, oranges, and yellows. It’s gorgeous.
Cheryl:
I love it. Again, this could be a whole episode. But what does it mean for you to live a good life with rheumatoid arthritis?
Jan:
This is kind of easy for me because no matter what I had, whether it was EDS prior or dysautonomia or RA, for me, living a good life is living the life that you want to live in the moment. I live in the present moment always. So whether it’s with a disease, without a disease, with the pandemic, without the pandemic, it’s living in the present moment in any joy that you can find.
Cheryl:
I love it. I love it. It sounds simple. But when you start actually practicing present moment awareness, you realize how much of your life is spent living in the past or the future, I mean ruminating over the past or pre-ruminating about the future, thinking about what’s going to happen tomorrow. What could go wrong? How do you cure or fix your health, and what’s going to happen to me? Yeah. That’s beautiful.
Cheryl:
Is there anything else you wanted to share with the listeners before we wrap up? You’re like, “Oh, I really wanted to make a point about this.”
Jan:
No, I don’t think so. I’m just happy that I found you on my journey, and it’s been a pleasure.
Cheryl:
Thank you. I’m just in awe of your mindfulness, and I’m very inspired to get that book, The Meditations. Did you say it’s Marcus Aurelius? Am I pronouncing that right?
Jan:
Marcus Aurelius, Meditations, and it’s an easy read because they’re very brief little meditations.
Cheryl:
I know that people listening are going to be really inspired by and, what’s the word, edified by your outlook and some of the tips, especially with managing multiple comorbidities. So thank you so much and-
Jan:
Well, thank you for having me.
Cheryl:
I will put Jan’s links and links to things we talked about in the show notes, including a link to episode 71 where I talk with Emily Rich, an occupational therapist who has POTS, postural orthostatic tachycardia syndrome, about hypermobility, EDS, and POTS 101 and a little bit of the research in the overlap between these conditions and RA, because it is interesting. There’s some additional tips there. But thank you so much, Jan.
Jan:
Thank you, Cheryl.
Cheryl:
I hope you have a wonderful fall day.
Jan:
You, too.
Cheryl:
Thanks. Bye for now.
Jan:
Bye-bye.
