Traversing the Terrain of Still's Disease with Carrie

When resilience meets wisdom, stories like that of Carrie Shepperson unfold. Her journey through the labyrinth of Still's disease, narrative rich with city savvy and mountain wisdom, is one I had the privilege to uncover. Carrie, hailing from Kentucky and a steadfast volunteer at AiArthritis, shares her personal odyssey from bewildering symptoms to a fierce advocacy for those entangled in the complexities of autoimmune disorders. Her analytical nurse's mind, coupled with an unwavering spirit, sheds light on the nuances of navigating a life altered by a rare medical condition.

Grasping the intricacies of Still's disease can feel like piecing together a puzzle in the dark, but Carrie's dialogue with me illuminates the path. She walks us through the rigors of symptom recognition, the significance of lab results that wax and wane, and the importance of understanding even the most enigmatic medical criteria. Our conversation explores both the scientific and the profoundly personal, offering solace to those embroiled in similar battles and providing a gateway to a community that supports and uplifts even in the grittiest times.

Beyond the diagnosis, we traverse the landscape of self-care, where Carrie imparts her wisdom on maintaining joint health and overall well-being amidst the storms of chronic illness. With simple yet potent strategies — a leisurely walk, the right balance of heat, ice, and nutrition, and the embrace of a gratitude practice — she paints a picture of a life embraced with joy despite its trials. Her story is a beacon, guiding listeners through the fog of their own health journeys with the assurance that every small step is a victory in the quest to live fully and vibrantly.

https://www.aiarthritis.org/
https://www.nomidalliance.org/
https://stillsnow.com/

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:42 Navigating a Stills Disease Diagnosis
• 12:32 Understanding Still's Disease Symptoms and Coping
• 27:01 Navigating Chronic Illness Support and Coping
• 35:32 Managing Autoimmune Conditions

Transcript

Jen: 0:42

Hi, my Spoonie Sisters, it's your host, gracefully, Jen, and I am here with Carrie Shepperson and I'm so excited. If you are not familiar with her over on Instagram, she's amazing. She describes herself as Kentucky and half city girl, half mountain woman, row or hunter are and farmer. She's amazing. She has all these amazing animals. I love watching her Instagram. Hi, Carrie, how are you today? Hi?

Carrie: 1:08

Jenni, thank you for having me. I'm so excited to chat with you.

Jen: 1:11

Oh, I'm so excited to you know. It's so much fun when we get to see each other face to face and chat in real time. I love it every second of it.

Carrie: 1:20

That's her technology We've like connected with people all over the world. It's been pretty great actually.

Jen: 1:25

I absolutely love it. And for listeners. You know I am pretty sure how you and I met each other was. We're both volunteers with AI arthritis, and how long have you been doing that?

Carrie: 1:36

I've fought with them a little over a year ago Maybe, maybe a little more. You know, I feel like every year since 2020 has run together, so I have to double check on that.

Jen: 1:47

It's kind of a giant blur. I started with them right right before World AI Arthritis Day, so you might have been a little before that, but it's been so much a little before that, I think. Yeah, so much fun. What is your favorite part of being a volunteer for them?

Carrie: 2:06

Well, I came to them looking for information and they're one of the very few websites and resource centers that has information about still disease, which I know we'll get into here in a little bit. So that's kind of how I found them and so I love how much like patient education they do, patient advocacy and all that and like what a fun group of people like Michael Guadalupe is hilarious, layla is so sweet, tiffany is fabulous, like it's just a great group of people to work with.

Jen: 2:35

And our little chat sessions going. It's so much fun. I love everybody.

Carrie: 2:39

Yeah, it's good. Everybody needs to come join us and volunteer.

Jen: 2:44

Absolutely so. This is a plug in. If you're not familiar with AI arthritis, go check them out. They are on Instagram. You can find them on their website as well. They also have a podcast. It's so, so good to listen to. There's all kinds of helpful tools and information. Go check it out, okay so we.

Jen: 3:06

we are here to talk all about you today. All right, so you have been diagnosed with stills disease. I'm super not familiar with it. I'm actually pretty excited to find out more about it. Do you want to kind of start us at the beginning of when you noticed something was going on and how things went for?

Carrie: 3:26

you. So you know we always I think a lot of us with these types of conditions can do kind of the hindsight is 2020. Looking back and seeing little pieces that may have been fit in for years before we ever got a true diagnosis. But the most recent thing that made me kind of get along the rheumatological journey was I had been battled it off and on for years, but I was having a really bad bout of Achilles tendonitis and I was seeing this precious little podiatrist here in my small community and turns out she is a psoriatic arthritis patient and it was really bothering her the way mine was presenting. So she asked me one day do you mind if I send off some labs and check your inflammatory markers, because sometimes autoimmune things can cause this issue? Well, sure enough, she sent off a bunch of labs and my said rate was 119, which is anybody who's familiar with that is just ridiculously high. The way my doctor described it to me is she was like I could shoot you in the leg and send you to the hospital and your ESR would probably be about 50. But it would not be 120. And I was like, okay, that's good to know. So she said your options are I'm going to send you to rheumatology first and if they don't find anything then I will have to send you to an oncologist, because there's not that many things that will cause that high of a said rate and it's probably either a rheumatological issue or a malignancy. So I don't know that any of us would ever like root for a rheumatological rheumatological problem, but I was then. I definitely didn't want it to be an oncological one. So I go to my first rheumatology appointment. They do the you know gamut of labs. I ended up having a positive rheumatoid factor at the time. So my experience with that office was they said they brought me in, ran in the room and said, okay, it's RA, here's a packet and just read it and just let us know if you have any questions and we're going to start to you on the black one all the day. And I was like, okay, so you know. After taking a deep breath and going in my car and crying for a second, I was like, okay, well, I guess this is what we're dealing with.

Carrie: 5:40

And I did not stay at that office very long. I had some other issues with that office and so when I went to my second provider, my RF factor then was negative. So I went from a zero positive RA diagnosis to a zero negative one and then, toward my end of the time with that office, they were really thinking that my symptoms more closely matched one of the spondyloarthropecies, like psoriatic arthritis or ankylosing spondylitis and so, but there were still these pieces that were not matching any of it. So this was a recurrent daily fever that happened at the same time every single day A horrible sore throat, some abdominal pain. I did have sclerosis, mesenteritis found, incidentally on the CT scan, which is sort of a, you know, psoriasitis type situation, really high liver enzyme and some other things that were just not really fitting in.

Carrie: 6:42

So at that point I had an old friend from nursing school that we worked in the NICU together. She reached out and said hey, can we take a look at your stuff? Because she is now a rheumatology nurse practitioner and I'm like at this point, you know, I'm like what the heck? Nobody knows what I have. Go right ahead.

Carrie: 7:01

So I met with her attending and as soon as I stepped in the office and I told him all my situation, he'd reviewed my stuff. He says I don't think you have any of this. Well, of course, like I basically like died, came back to life, sitting right there in the chair and I thought, okay, this is where they tell me, like it's all in your head, I don't have any of these things. What does he need? And he said, no, no, I don't think you have an autoimmune problem, I think you have an auto inflammatory problem. He's like write that down on your old paper up there. And I said, okay, and he's like I want you to go home and that's your homework is to research that, and I want you to come back here in two weeks and tell me what you think you have. So I found this. Yeah, I mean that was he had an idea that he, just like I'm, he was waiting for some lab and stuff and he knows I'm a big nerd and wanted to, like you know, research out of it so.

Jen: 7:52

Okay, yeah, I'm fascinated with that.

Carrie: 7:55

Yeah, not like, don't you like? Not, you know, not literally diagnose yourself, but like we'll come back in two weeks and compare notes and see what we think. So I went home I found this fabulous site that I think we'll talk about in a little bit, but it was formerly the Nomad Nomad Alliance for auto inflammatory disorders and they have this fabulous chart that lists all the different auto inflammatory diseases and I literally remember sitting there with highlighters and colored pencils are like circling things that matched me and things that didn't. And so when we reconvened in two weeks I said I think maybe I have still disease and he said that is what I thought you had. The second you walked in the door. So I think he wanted to see like what my unbiased you know, just looking at all that from my perspective, to see what I thought. And I thought it was pretty cool that we matched. So he said here's the deal.

Carrie: 9:57

You would probably I mean I have very few auto inflammatory patients because they are very rare he said I can send you directly to a specialist like Vanderbilt or Cleveland Clinic or somewhere like that, or we can try some things here. One of the things that you do for these sort of family of conditions is you try interleukin one inhibitors, they kind of become diagnostic in themselves because if they work, they kind of become diagnostic in themselves because if they work that's a pretty good indication that that's what you're dealing with. So that's kind of my long road. Like I know, so many of us have Incoming kind of settling to a diagnosis.

Jen: 10:36

Okay, so I have so many questions popping into my head. Let's start with the first one. What is the difference between an autoimmune and an auto inflammatory?

Carrie: 10:48

Great question and one that I spent a long time trying to learn, because in nursing school we get about yay much Information on anything like this. So all of this is stuff I've learned, you know recently as a patient myself, in autoimmune disorders. That is a malfunction for lack of a better word of your Acquired immune system. So these are like antibodies that you make when you get exposed to viruses or bacteria or things in your environment, things that you, like. You acquire this part of your immune system throughout life as you're exposed to different things and autoinflammatory disorders.

Carrie: 11:28

It is a malfunction of your innate immune system. So the immune system you're born with, so that includes, like your B cells, your T cells, like your body to make a fever, you know things like that. So that part of your immune system you're born with is what is kind of having issues, and there's several. Now they know that there are several conditions that sort of want to cross over. So there, I think Recently they're kind of saying that like lupus is a crossover one. It has some innate issues and some acquired issues. So it kind of has the whole auto inflammatory and autoimmune thing going on at the same time. And I think also maybe some of the spondylolisorthropecies, which is what they also think maybe I have in addition to stills. So I think it's all kind of the pieces are falling together, but it's all kind of under this umbrella of our immune systems are really just Wacking out. It's just a different part of the immune system is what's having the issue.

Jen: 12:32

And, and how fascinating was it to look at that chart, was? I mean? Did it feel like a lot of information as you're looking at this chart and kind of going, okay, well, this is what I'm feeling. I mean, what was it like looking at the chart?

Carrie: 12:46

I guess pretty wild really, in a way, it was very validating because I was like, wow, like these are literally Listed out symptoms. It took it and that really helped my very Analytical nurse brain to it like really did it in like a head-to-toe fashion, like what are the skin symptoms, what are the Neurological symptoms, what are the respiratory symptoms? Like it broke it down and then a lot of these. Do you have a rash or a series of rashes or something involved? And so they were pictures. Like it was pretty, it's pretty wild, and I also just think I also thought like, wow, there I didn't even know any of these things existed and they're very, very rare. So Phil's disease, I think, affects 40 and 100,000 people, or 40 in a million. I know I'll misquote that, but if they're, that's just, and that's Phil, which is probably, you know, one of there, some that are way, way more rare than that.

Jen: 13:49

So so is it thought of something as being genetic?

Carrie: 13:53

Most of them are almost everything on that chart has. There's a box first for genes and a lot of them do have a gene that is affiliated with them and most of those will crop up in like the neonatal period. So when you're a baby and you're in your first born up, through like the first year of life, a lot of those things will rear their heads in because there is a lot of genetic components. However, phil's disease, first syndrome and Sija are All ones that do not have a gene involved, but I have undergone a genetic testing just to make sure it's not one of the other ones that does have a gene involved. But there's not a gene marker, or at least one they know of yet, that is affiliated with Phil's disease.

Jen: 14:46

Okay, so now that you also.

Carrie: 14:50

Go ahead. I guess I should probably to say that Sija, which is Like a juvenile idiopathic arthritis, and an adult onset still disease, are basically there's a new push to Get people to just call it all still disease, because it's basically the same Syndrome, it's just whether it presents to you as a child or whether presents as an adult. So that's kind of a new thing too. So you may hear a lot of that coming up.

Jen: 15:16

Okay, so so since you've been diagnosed and you've started to learn all kinds of information about it, what exactly is stills disease Physically has some criteria and, of course, I don't meet them all perfectly, as most of us do, do we? Have our questions.

Carrie: 15:40

We never do, and so when I question my results about it, he was like None of you patients ever fit all the boxes. It's really okay, we expect that. And I was like, okay, thank you for making me not feel great. But typically you're gonna have a high fever, and this is the one place where I differ a little bit from your Standard. Still, disease is typically their thought of having a fever of a hundred hundred and two or greater, and mine ever, never, peaks over a hundred and one. But what is very specific to this condition is it involves a quotidian fever, and so what that means is your fever will spike at roughly the same time every day. So what that looks like for me when I would have layers of this is and sometimes it would last for weeks and weeks is About 3 pm In the afternoon I would start feeling like Fluish, like oh god, I'm getting sick, and this was happening in the height of COVID too, and I worked in a hospital, so I can't tell you how many home COVID guests. I went through thinking, okay, it finally got me, you know, like every after. So I would say I would start about 3 pm Feeling like like a key, just really tired, like you feel like you're gonna when you're getting the flu, and then a sore throat would kick in, and I'm talking a Like straight throat level sore throat, like hurts to swallow, which was a huge symptom of COVID at the time. So we are feeling like this and then by about 6 pm, roughly somewhere between 6 and 8 pm, my fever would spike up to usually for me it was about 100 to 101 and then by 9, 10 pm that night it was completely gone. I felt like a million dollars and I would get up again the next day and do it all again.

Carrie: 17:32

Another classic symptom of stills is hepatomegaly and spleenomegaly, which are enlarged liver and enlarged spleen, which I had mildly at the time when I was diagnosed. That can also cause elevated liver enzymes. Another key feature is people do tend to have a very high ferritin level in their blood, which and I'm talking like in the thousands Mine is high, normal, like close to 200, but it's never been that high, and so that is a key feature also that you can typically find with stills. And then you have very RA type symptoms, so like polyarthritis sometimes it's symmetrical a lot of joint pain, even some, I think, myalgia, so you have muscle pain on top of joint pain and then some joint swelling and things like that.

Carrie: 18:25

So your typical arthritis symptoms that go along with it still tends to affect the ankles and wrists more than some of the other conditions. So that's something to kind of be aware of and I think those are pretty much the main symptoms. You can also have some swollen lymph nodes with it. But the biggest things are if you also have to have a negative ANA and you have to have a negative rheumatoid factor, because otherwise that would you couldn't say that it was not lupus or RA or one of the other ones. So your all your other rheumatological labs will be also be negative.

Jen: 19:05

Okay, Okay, so oh, and the rash. I forgot the rash.

Carrie: 19:09

Oh, yeah, Tell us about the rash. Yeah, Literally the stills rash. So it is a now again. Typically for most people it is a red rash, Sometimes it can be itchy, Sometimes it doesn't, and it will typically come up with the fevers. Now, sometimes I would have mine outside of the fevers, but it would come up. It would be on your trunk, your limbs, and it's like a raised the fancy word is macular rash and then it would just disappear and it's usually like a salmon colored. So you'll hear the typical stills rashes of salmon colored transient rash. And then I also have had some other bar rashes on top of that, which is probably more leaning toward that like so soriatic saying, but that's a story for another day.

Jen: 20:03

Wow, okay, how frustrating to deal with this. Day in and day out, it's like, okay, well, you know, in an hour I'm going to get a fever, possibly a rash. I'm going to feel like hell. And then, well, tonight, before I go to bed, I'm gonna feel great, yay.

Carrie: 20:23

Yes, 100%, and at the time I was working Monday through Friday. Well, then you know, you get off work and then you get to feel like crap all evening and then get up and go to work again.

Jen: 20:34

So yeah, it was incredibly frustrating, well and you're a nurse, I'm assuming you work incredibly long, stressful, backbreaking hours, you know, standing on your feet serving others all day long. Plus, you guys have this incredible farm and animals. Yes, how in the world did you get yourself through all that?

Carrie: 20:55

That and if I could give advice to anybody going through this, I think you really have to find your why and what brings you joy, and that needs to remain your focus, because those things are what get you through these days. So on the days I felt the worst, I would go and make myself walk through the garden, I would go and make myself go down and do my chores with the goats. I would make myself do these things because that brought me joy, no matter how I felt on the inside. Like that, joy is a choice, and so I think that just my passion for those things is what kept me going through the really hard days. But there were some days that, you know, no amount of that would whatever matter, and those that's okay too.

Jen: 21:50

I think that's incredible advice and that can apply to anyone, anyone. You know we don't want that to take our joy away and it's easy to let it do that. And you know we're going to circum to those moments in those days or there's hours where you know we feel the woe is me kind of feelings and that's to be expected, and we're going to mourn our old life, right, but you still want to keep a hold of that joy.

Carrie: 22:17

And I think grief is just such a natural part of all this, and you go through all the stages and you go through sometimes all in one day I know, I have you know hundreds of times and denial and bargaining and acceptance and all the things.

Carrie: 22:34

And yeah, you can go through it four times in one day and that's very, that's very good too. But I think that, yeah, I think that. And then especially, animals are great, just because you know they don't care if you're flaring or not. They are like where's my hey ladies? Like they don't care and I was like it gives you a purpose. You know you got to, still got to do your chores, even though you don't feel good. You know so that. And then usually you know, like we all know, motion is lotion. So you know, when you get down there and by the time you get to the barn, you loosen up a little bit or you do some work. So it's okay.

Jen: 23:08

What is your favorite animal?

Carrie: 23:10

My favorite animal are the goats on the farm. Well, I don't know. It's a close tie between them and the and the cows. I would not recommend goats to beginners. They are not your gateway drug to farm animals. Make those your very last choice when you're picking out your farm animals. Do like me and start with some chicken work up from there. Goats are the most delicate and yet indestructible animal I've ever known. Like I've seen my herd queen Myrtle, aka murder, aka queen Satan puppy she. I've watched her fall 15 feet out of a tree that she'd climbed and lands like a cat and be fun. But then I've also had a goat who, like one goat, ran her in the stomach and her room and shut down and she almost died of neurotoxinia. So like they're just they're like somewhere between a cat and a dog. I call them horned cat dog. They just have the craziest personalities and they're. I love their milk like I milk the goats we make soap, we make cheese I make bath bombs and go milk soap.

Carrie: 24:24

So that's probably my favorite animal because they're for I call them like my spirit animal. But I do also love my cows. I love to milk down one day, but that's going to take a little training, but they're great to. I love cow cuddles are the best.

Jen: 24:40

So I think you need one of these. And and people aren't going to be able to see this, and and because you so because I have my headphones on, I don't think they're going to be able to hear it either. I don't know if you'll be able to, but it's a screaming goat for your desk. Let me know if you can hear it. I don't know if you can hear it, but it's correct. I think I got this for like $6 on Amazon.

Jen: 25:09

And I got it for a gift exchange actually, and I thought it was so hilarious that at the gift exchange I actually used to steal from people. Right, I stole it and kept it because I thought it was so funny and I was the one that brought it. And then another gal thought it was so hilarious, she wanted it for her desk because she's a teacher, and so I ended up ordering one and sending it to her as a surprise. I think you need one. I think you need one.

Jen: 25:36

You know if all else fails if you're in a rough mood, play the streaming goat. I am there, amazon, here I come. Ok, so what does your treatment plan look like and do you feel like your symptoms are well managed?

Carrie: 25:52

Personal experience throughout all the treatments from the get-go when they thought I had RA, has been that typically I will try a biologic, get about six to eight really good months out of it, have a good flair, and then it feels like it just never has the same efficacy after that. I will say that when I finally arrived to the sales diagnosis which goes back to saying that kind of the treatment is a little bit diagnostic in and of itself is that when I started on the Interleukin-1 inhibitor, alaris, which is canokinamab, that basically had complete erasure of my symptoms and I have gotten. I started that in October of 22. And it wasn't until about October of last year that I feel like it's just now kind of starting to lose its efficacy a little bit. So that's one of those things like I will probably try to ride that train as long as I possibly can because there's very few IL-1 inhibitors to try. So we're going to try to make this thing work as long as possible. My other plan of treatment is again we're kind of looking into still there's.

Carrie: 27:08

I actually did a poll on the International Still Support Group that I am on on Facebook who actually AI arthritis sort of co-manages that, and I did a poll of people who have still plus another condition and a lot of people have been diagnosed with still plus RA, still plus Boreatic, still plus AS, still plus blah, blah, blah. So I don't think I'm alone in that at all. So I think maybe I can get a little more time out of the alaris which is up until very recently, has taken care of all those systemic symptoms. So I'm talking the fever rash things like that that's just now starting to creep back in. But the joint stuff I'm having a really hard time with right now. So I think hopefully adding a little bit of treatment for that portion will buy me a little more time with the IL-1 inhibitor that I'm on currently. So that's kind of where we are now.

Jen: 28:11

OK, so your inhibitor, can they play around with the dose? Can they up the dose and see if that helps with the symptoms that are creeping in it?

Carrie: 28:20

is a weight-based drug, so I'm currently on the highest dose they can give and the highest frequency. So unfortunately, there's not really much we can do there except purchase, try a different one. I do think, fortunately, though, that they do have the antibody test available for that particular drug, which is great for the test to see if you've developed drug antibodies, so that can give us a little more clear picture of whether the drug's kind of run its course for me or maybe just get some other things creeping in that we have to deal with. So that'll be good. I think that's our next plan with my next appointment coming up.

Jen: 28:56

So my next question for you is looking back. What do you wish you had known at the very beginning of this journey? Great question.

Carrie: 29:05

So much. I mean, I wish that I had learned more nursing school, but then there's plenty of people that we don't learn anything like that. I think the biggest thing is that I had no idea the mental toll that this would take, the constant wondering what is wrong with me? What if they're wrong? What if it was the malignancy that made my said rate that high? What if this? What is that? What if I can't be a nurse anymore because it's too hard for me to work like that? What if I lose my job? What if I don't have enough money because I haven't been able to go to work? What if this? What if that? That is a huge mental toll. So I think the mental toll surprised me way more than the physical toll ever did. And just feeling and I still feel this way to today I feel like you also get a little bit of imposter syndrome creeping in, a lot of self-doubt. I think that you worry like what if? This is in my head? So many of these conditions do not have a? Oh, you have. This lab is positive, so check the box. This is what you have.

Carrie: 30:21

Both of my current working diagnoses are diagnoses of exclusion, and that's very hard for me as somebody who is a perfectionist in a very anal personality, to not have somebody say this lab is positive and you have this disease and this is how we treat that disease. That is super hard. That's hard, hard, hard. When you you're just looking for a sense of community, I think and you're not sure if you fit into that Like what if I really don't have skills, like, and here's all these people that do have the high ferritin and the 104 fever and that kind of thing and that's not me. What if I don't have that? And then I'm like trying to masquerade as one of these people in order to have a sense of community. Or well, I hear this maybe it is psoriatic arthritis, but I've never had like a typical psoriasis rash. So it's like you kind of end up feeling like you're floating out in this nebulous place without a home.

Carrie: 31:20

Because I think that, like my sisters and all these wonderful online spaces, I'm so glad that people like you exist, where it's not diagnosis exclusive, because I think there's a very large supportive community around things like RA and lupus and things that have a or can have a very definitive diagnosis. So it's hard for people who have some of these things where it's like, well, it's not any of these things, so we think it's this. So just some mental toll can be really, really huge, and I don't think I was ultimately prepared for that part. I think I knew, oh well, I can play through the pain, blah, blah, blah, and the symptoms, I can function, I'll make myself function. But it's the mental toll that I think I wish I had known so that I could be more prepared for it, and instead I've had to develop coping mechanisms along the way.

Jen: 32:19

Well, and I think you touched on a really good point and part of why I wanted to create this space Because some of us fit in a box and some of us don't, and then some of us we fit in a box but then we have other stuff going on outside of the box and it was important to me for people to support each other, whether we fit into a box or not. I wanted to try to pull everyone together and say, hey, we might not have the same things, but we get each other and we can support each other, and that's important to me. And I think the biggest part was 100%. The beginning of my journey was so hard and so scary and you know, I lost friends because sometimes people don't believe you, or they think you're making it up, or they think you want attention or it's too difficult for them, so they just kind of phase you out.

Jen: 33:09

I wanted a space where we can come together create some amazing friendships and support each other too, and I don't care which illness, which thing you have going on. I want us all to come together, and so I'm glad you touched on that and I'm glad that we met All right. So my next question for you is about your Spoonie Toolkit. What are the top five things inside of your kit?

Carrie: 33:38

So the very first thing in my kit, let me find my lips because I want to be, you know, perfect. So it's just good timing, because my first tool is phone a friend. So I think it is vital that you develop some kind of support system and that doesn't have to look like people who live in your house or in your community. That can be a support group like Room to Thrive or my Spoonie sisters or I mean that's one great thing about you know, social media and the internet gets a lot of slack, but I do think that it has been wonderful to bring people together who may not ever get a chance to meet in real life. So I think it's super, super important to develop some kind of support system, be able to phone a friend and be like Jenny. I cannot get over this fatigue today. Like just brushing my teeth, I had to go lay down and take a nap, like I know you understand, and that is so important because somebody who doesn't live with this every day, they don't get that, they don't understand that like taking a full shave, your leg, wash your hair, moisturize your face kind of shower is we'll take it out of you on certain days, and that you can just chalk it up to. That's about all I can get done that day. So I think that that is the biggest one is you've got to have some kind of support system, and it doesn't have to be somebody next door, it can be on an online space. The second thing would be movement crucial, crucial, and now we are definitely getting some evidence-based research on that Recent studies that have come out that shows that it reduces fatigue, it reduces muscle thornness, it reduces joint thornness and my favorite phrase is motion is lotion, and there's times where I'm kind of scared to stop moving. You know the second I do I'm gonna stiffen up and feel like poop. So I try to keep moving as much as possible. Even on my worst flare days, I try to make myself like just go out and the weather's pretty, just take a five minute walk up and down the driveway. It can be turtle flow, that's okay, but it just lubricates the joint, gets some warm, reduces the pain, and so you can find some kind of movement that brings you joy, because don't pick something that like. One rheumatologist told me to swim and he was just so adamant on that, and sometimes swimming would be joyous for people and I like to swim in a pool in the summer, but I don't wanna go swim at a gym so like. That is not something that I would have stuck to. So I think it's very important to find movement that you enjoy and that you love. So that might look like aerobics, that might look like weightlifting, that might look like a walk, that might look like yoga, that might look like five minutes of stretching in a chair. That's okay. Just find something that you enjoy and I promise it'll be worth it.

Carrie: 36:33

And then my third thing is heat and ice. So I think we all can attest to the fact that sometimes our joints like feet, sometimes our joints like ice. So I think heat is very important because it brings blood flow to the area and helps heal those areas and helps get blood there so it can get the inflammation out. But sometimes certain things like ice like, for example, my knees really like ice, so I'm a knee icer. But then I might have a hot pack on my ankles or my wrist. So just to experiment and figure out what works for you, get a million different kinds of packs, just find the best one for you.

Carrie: 37:10

And then hydrate. And eating right is another thing, and I don't mean eating right, like you gotta check your calories and crap like that. I'm not about that life, but I do think it's important. Sometimes, when I'm in a really bad player, I have no appetite, so I really try it's nothing else just to like meet my protein goal that day, because I think when you are fueling your body, it makes it easier for your body to deal with what's going on. So definitely hydrate. Get your favorite water bottle, your Stanley, your Nalgene, whatever you like, and make sure it's full and that you're using it.

Carrie: 37:46

And then my fifth thing would be compression and braces. So, like I have a whole drawer full of different things. Love my compression gloves, love my wrist braces, love my compression socks. If you're like me and you're a nurse and you work on your feet, if you are not already wearing compression socks, I don't know why you're not. Please go buy some immediately. They are lifesavers. Wear your compression. Talk to your provider about what appropriate braces are for you, because all of those are game changers.

Jen: 38:17

And now, how about shoes? I'm assuming shoes for your job are super important. My husband forced me to finally go to one of those specialty shoe stores to find like a wider toe box, because I have rheumatoid arthritis, I have bunions, all the things. And then he also forced me to get inserts. And I'm telling you, if you're not used to inserts it's weird, and I'm still trying to get used to it. So have you had to find some special shoes for being on your feet those long hours?

Carrie: 38:48

So any fellow nurses out there. We are all familiar with the dance goes, the clogs that nurses wear, and I lived in those for probably the first 14 years of my career, twisted my ankle plenty on them, if you know, you know. And when I got diagnosed with that I could not wear them anymore. My ankles didn't have the strength for them. They didn't fit my feet well anymore. So I have gone to like kind of, like you said, like a nice, roomy shoes. So I have switched them in between crocs, nice and roomy. You know they're good for the hospital because you can wash them off. But my newest love are the Boston Birkenstocks and I pretty much live in them 24, seven, 365 days a year.

Carrie: 39:44

But the point is especially people who are dealing with any kind of Achilles and heel stuff. Yes, girl she's showing us her lovely Birkenstocks. I mean, I live in them all the time. It was in the summer, clouds in the winter Is that a lot of times a heelless shoe is really good, or an open back shoe, because when you do have Achilles 10, nice, it can actually make like a hump kind of develop back there. So just experiment. But I think the biggest thing is room. It helps with swelling and just general pain and comfort, really so, and I recommend a flat shoe. I think that the zero toe drop has really helped with, in kind of Achilles plantar fasciae I just said.

Jen: 40:30

Hands down. Totally agree with you, absolutely. So next question for you how do you maintain your sunny disposition, sunny disposition.

Carrie: 40:42

I think that goes back to my wife. You know, I just I think again. It's joy is not one of those things that like comes to you, it's not like bestowed upon you by the universe. Like you have to find that you find the joy in a day. I can still find joy in a day when I am feeling like absolute dog poop. You just have to know where to look.

Carrie: 41:12

So one thing I've been doing lately is I have a gratitude page in my little bullet journal and I call it one good thing. So each day I write one good thing from that day. And of course, most days I can come up with 50 things that are great, but every day I can come up with one good thing. And so that might be like I got to talk to Jenny Weaver today. Like that'll be my one good thing today, like, so, yeah, like you can find a good part of every day. So I think it's so much about mindset. So much about mindset and use your resources. Like I have a fabulous therapist, I have fabulous doctors, I have a fabulous support system, like I really put my mental health first in everything, period. So I think you really have to prioritize that and just don't wait for joy to come to you. You go find it. Go seek the joy and bring it out of the day if you have to.

Jen: 42:18

Absolutely. I think some of your quotes here belong on on some stickers or some posters or something, something that maybe take some dry erase markers, write it on your mirror so you have to see it every single morning. How to write on your face or minding you. I think we all need to consider doing that, okay, so resources. What are some resources that you would recommend?

Carrie: 42:45

Yeah, I have my Spoonie sisters, obviously, but you but the reason I say that too is because, jenny, you, you are so good to share a million resources, so like you're a great place to go for people who are looking like for specific resources about conditions and things like that. Like you just have a lot of things that would cover everybody. So I don't want to beat a dead horse because you've shared a lot of great ones. So I think, for our purposes today, I'll focus on ones that are specific to the auto and claimatory conditions, because people don't know as much about those. So the first one that I would recommend is a AI arthritis, which we talked about earlier. Their website is wwwairthritisorg and they are a fabulous group. One thing I will really point out, excuse me, that is so good about them, like I said earlier, with their patient education and specifically for still disease, they actually have pamphlets that you can print out or put in your wallet, cards that you can put in your purse or your wallet that you can take Like, say, you had to go to the ER. One life-threatening complication of still disease, whether it's the juvenile form or the adult onset form, is something called macrophage activation syndrome and it can kill you rapidly, and so that is something that, like you need to be able to tell those doctors and providers to look for specific things in lab work and things like that. So that is just a great group, and they've done a lot about the condition and about resources involving that.

Carrie: 44:21

The next one I would mention is the auto-inflammatory alliance.

Carrie: 44:26

This is the one that was formerly known as the NoMID alliance, and their website is wwwnomidallianceorg, and that is where they have all that great information about each individual disease and they have that amazing comparison chart that I talked about with my highlighters and my color pencils and everything. And then another one that is very specific to stills is a website that is stillsnowcom and it's run by Dr Jack Cush, and some of you who have been in the rheumatological game for a long time might know him because he is very, very active with Rheum Now, which is his parent website, and both of these websites have a ton of information. Like he shares the very latest research articles and talks about what they mean, and he's one of the few people in the country who's really worked extensively with stills disease, and so you can go on there and use the symptom calculator and see if you meet the criteria and you can also get a lot of ULAR and ACR coverage through both of those sites. So those are all great sites for auto inflammatory diseases specifically.

Jen: 45:44

Thank you so much for sharing those. I will make sure that I link them in the show notes for easy access. And, of course, lastly, where can everyone find and follow you?

Carrie: 45:54

Oh, I don't have a page that is specific to the Spoonie life, but I love having new friends, so if you just want to see a day in the life of a Spoonie, who is a nurse and a farmer, come follow me on Instagram. I'm Carrie Branson on there and if you like specifically the farm animals, you can follow our farm page, which is Southern Songbird Farm, on Instagram and Facebook, and you'll get lots of fun pig videos and goat videos and cow videos and channel videos and cute animal pictures.

Jen: 46:30

I love it. I don't think I follow it, but I need to. Now I have an Instagram dedicated to my cats, so, yeah, I definitely I'm here for the animals. I want to see all the goats. Give me the goats.

Carrie: 46:44

I need to have a screaming go.

Jen: 46:46

I want to see some goats screaming yes, exactly Well, thank you for taking the time out of your day to be with us and, gosh, I hope I get to have you back sometime.

Carrie: 46:59

Anytime. Thank you so much for having me. This is a great show. I love listening to everybody's story and I hope that maybe somebody might have learned something today.

Jen: 47:08

I hope so too. Is there anything that for some reason we forgot to touch on, that you can think of?

Carrie: 47:14

So just keep on keeping on people. This stuff is a hard pill to swallow, but we have a lot of great resources and great people out there to connect with.

Jen: 47:26

I could not agree more. Well, thank you again. And well, my spinny sisters, until next time, don't forget your spoon.