Episode Transcript
Diaries with Katie
[00:00:00] Jill Brook: Hello, fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today we have an episode of the POTS Diaries and we are with Katie today. Katie, thank you for being here.
[00:00:13] Katie: Thanks for having me. I'm so excited.
[00:00:16] Jill Brook: So tell us some basics. Who are you? How old are you, where are you? Where'd you grow up?
[00:00:21] Katie: So I'm Katie. I'm 39. Next week I'll be turning 40. Woohoo.
[00:00:28] Jill Brook: Woo.
[00:00:29] Katie: Yes. Thank you. I live in Wyoming and I've lived in Wyoming all my life. And we live in a tiny, tiny town. It's a little mountain town at like 800 people is the population. So very, very tiny. And that's all I've really known because that's Wyoming.
I think the biggest town that I've ever lived in is 20,000 people. And that was like insane for me. But yeah, we love our little mountain town. I'm married to my husband Nevin, and we have three kids and we love to enjoy the mountains and go boating and I'm also a part-time cosmetologist and an artist.
[00:01:13] Jill Brook: Neat. So is your tiny little mountain town known for anything in particular?
[00:01:19] Katie: It's just known for the Bighorn Mountains and so people drive from all over the state to come use the recreation for that, for hiking and snowmobiling in the winter. ATVing in the summertime, camping, all that good stuff. Yeah.
[00:01:38] Jill Brook: Okay. And you mentioned art. Tell us more about your art.
[00:01:43] Katie: Yes. So I have an Etsy shop. It's called 3 0 7 Art by Katie. And I like to paint and draw, but I would describe my art as kind of whimsical, abstract. I kind of get my inspiration by the wildflowers in the mountains and just the trees and the mountains and all the beauty that I find there. But I've been painting since I was a little girl, and I've had a little bit of education, but most of it is self-taught and I just love it. It just makes me really, really happy.
[00:02:20] Jill Brook: Well, I actually checked out your Etsy shop and you make beautiful things. It's so colorful and cheerful, and sometimes you have interesting backgrounds, like you don't always just paint on normal canvas. Right? Tell us about that.
[00:02:33] Katie: Right. Yes. Thank you so much, Jill. That makes me really happy. I like to paint on wood slices, so my husband and I will actually go up into the mountains and we'll find like a tree trunk that's already cut. We don't like to cut like a nice tree already. You know, we, we find a tree trunk that's already cut and then we'll bring it home and make slices out of it and we'll sand it down so it's nice and smooth so I can actually paint on that surface.
And yeah, so I'd love doing different things than your typical, just paint on your canvas. So I paint on little wood rounds also to make ornaments for Christmas time and bigger ones that are like 10 inches. And those are probably my most popular ones on my Etsy shop. Everybody loves those and they're really, they're really, really cool.
You should check 'em out.
[00:03:27] Jill Brook: well, it's such a tribute to the natural beauty around you. That's really cool. Are you at a high altitude at your mountain town?
[00:03:33] Katie: It's actually not that high, but I couldn't give you an exact number. I'm.
[00:03:40] Jill Brook: No worries. Okay, and then finally you mentioned that that you have a cosmetology business.
[00:03:46] Katie: Yeah, so I've been doing hair for 22 years now. It's another one of my passions and I decided to take it into my own hands since I've gotten sick and go to people's homes and travel that way. That way I don't have a salon and I'm not having to pay rent or something of that nature. You know, this way I'm not paying anybody, anything. I can work on my own terms and if I'm sick, then I don't have to go to work. So this works out really, really well and my clients are really, really understanding and it's been really awesome to work this way. And we live in like such a small area. We call it the Tongue River Valley where I live.
So the farthest I ever really have to drive is maybe 10 miles to a client's home, which isn't much at all. So yeah, it's, it's really great. And I love like the personal end of it, you know, like no one else is invading our conversation. I just get one-on-one time with my clients and it's really, really great. The relationships you can create.
[00:05:00] Jill Brook: Oh man, that is such a great idea. I wish that I, as a patient could get my hair cut by having someone come to my home so I don't have to go into a crowded place and smell all those smells. And you could probably like sit outside on the deck or something on a sunny day.
[00:05:17] Katie: Yeah, it's so great. Like a lot of my clients, they'll be in their pajamas and a lot of them have little kids you know, that are just running around and sometimes they'll like, you wanna drink some wine with me? And I'll be like, well, probably not cuz then I'll get all splotchy and dizzy.
But you can have wine... So it's just a really relaxing atmosphere for them and me actually. So it's really awesome.
[00:05:43] Jill Brook: Very cool. Okay. How would your friends or family describe your personality?
[00:05:48] Katie: I had to ask my friends and my family about this because I'm kind and caring of what I would say, but a lot of them said that I am family driven and I have a bubbly personality. I'm affectionate. And they also said that I am creative, of course, and I'm that type of friend that's honest and straightforward. I'm gonna be that friend that's not gonna lie to you. If you need a straightforward answer, I'm gonna give it to you. And I'm pretty funny too. I have that comical side to me.
[00:06:23] Jill Brook: Excellent. So have you had POTS and associated things your whole life or did you have a life before POTS and chronic illness? And if so, can you give us a snapshot of what your life looked like at that point?
[00:06:41] Katie: Yeah, so I was diagnosed with POTS last summer and I didn't really have a lot of issues. Like serious issues with POTS leading up to that. Like things were happening to me. But my main issues coming into this were, I've been diagnosed with hypermobile eDS and that came about in 2014, and that took a couple years to get diagnosed with that.
So I kinda had a feeling that more things would come about with eDS once I got diagnosed with that because you know, once you start researching and you know, trying to learn all you can about Ehlers-Danlos syndrome, you read about POTS and mast cell activation syndrome and all these other things that come along with it.
It was in March of last year, I got a new doctor who's treating my EDS, and she's been really, really amazing and I started telling her like, I would break out, my arms would break out. Well, you can see me right now. No one else can.
[00:07:49] Jill Brook: Oh, yep. You've got blotches confirmed.
[00:07:50] Katie: Yeah, really, really bad.
For some reason, I'm really hot right now, but my mast cell is acting up right now. I was telling her that I thought I might have mast cell, and she's like, well, tell me what happens. And so she diagnosed me with mast cell then. And so I knew that POTS was probably coming next because I would get dizzy when I would stand up, but I I just thought that was normal.
I thought everybody would go through that. And then everything that happened to me I thought was normal. I thought everybody had these things happen to them too, and I am always so cold, like my fingers and my hands, my toes. I just can't ever get warm and in the summertime, like my entire family loves with the air conditioner being on, and I hate it, I want it to be like 78 in my house, and they like it to be like 68. So I'm always in my wool socks and a hoodie and I like to go sit out on our back patio and it faces south and it doesn't have a roof on it or anything, but I just love it. I sit out there and I bake, sit out there, and I get nice and warm.
I can feel like the blood rushing through my body and then I can feel my heart starting to race. I just thought that was the natural feeling of your body, like warming up because your body loves the feeling of getting warm and the sun. And I explained this to my doctor and she's like, no, that is not normal.
Not everybody feels that like that is probably POTS. And I was like, oh. She goes, you should probably check your heart rate after you do that. Like sit in the sun for five to 10 minutes and then check your heart rate. And so I did that and my heart rate was like up to 150 one day just sitting in the sun.
[00:09:45] Jill Brook: Oh, just sitting. Oh.
[00:09:46] Katie: Yeah. So that was a good indication. And then I had kinda a pretty bad episode when I had an art show downtown last summer, and I thought I was like having heat exhaustion or a heat stroke, but I was running my art booth for a few hours and it was like 99 degrees on the black top. And thank goodness I had a friend there helping me work my art table because I had such brain fog that couldn't really communicate very well with customers and.
I tried to look presentable to people, but my hair was just drenched with sweat and my heart was racing. And this just went on for hours. I had chest pain, I had a migraine. I knew that I had like all this splotchiness going on, you know, and I felt like I could faint several times. And so after that it kind of went into like this big flare up of joint pain and I was kind of laid up in my bed for a good few weeks after that. And after not getting better, I finally contacted my doctor and she was like, yes, that definitely sounds like POTS. I don't think you had a heat stroke. And You should probably go to the hospital and let's try an infusion and see if that helps you.
And I just got sodium chloride infusion and I walked out of the hospital and I felt amazing and I didn't even have any more joint pain. And I was like in tears because that was the first time that had ever happened to me. I hadn't had pain in a long time. So that's when I was diagnosed with POTS officially.
[00:11:36] Jill Brook: Wow. So that was like the liter or two of saline infusion that changed your life?
[00:11:42] Katie: Yes. Yep. And now I have an open order to go to the hospital and get two a week if I want to, but I don't. It's too expensive. My insurance is good, but it's still like $200 after my insurance, so $200 each time. That still adds up quite a bit.
[00:12:04] Jill Brook: And how long does it help you for? Once you get an infusion?
[00:12:08] Katie: I feel like I'm still testing those waters out, but I feel like probably a good week. I feel pretty good. Yeah. Yep.
[00:12:18] Jill Brook: you had mentioned a minute ago that your brain fog was so bad during that hot art fair that you had a hard time communicating with your customers. Can you just talk a little more about what that felt like to have brain fog that bad?
[00:12:31] Katie: Yeah, it was just embarrassing. Like I can remember that they'd hand me their money to pay for something and I was trying to give them change back from like a 20 from 10 50, you know, and I couldn't even do simple math like that. And so that was super embarrassing.
I'm not great with math anyways, but just to do simple math like that. And I couldn't do it in my head. It was horrible. So I remember the math was really, really hard for me that day. And a lot of people just asking me about my art, you know, like, How do you come up with these ideas? And I was just like I don't know.
I just do it. I wasn't like in my art groove that day and I just felt like I wasn't as personable as I usually am. I'm usually very bubbly and can carry on a conversation with anybody and, but my friend reassured me that I did totally fine and everybody loved me, but I just, I didn't feel like I did very good that day.
[00:13:37] Jill Brook: Oh, good friend. So you had talked about having A family and boating and camping and hiking and all these things that, in my imagination, it just sounds like the most beautiful, picturesque Wyoming scene. Are you able to do all those things or has POTS and EDS in mast cell activation changed any of that?
Or how do you manage to enjoy the outdoors these days?
[00:14:03] Katie: Yeah, so our hiking has dwindled quite a bit. We haven't even gone this year yet at all. It's pretty hard for me to go hiking and when we do we try to find a trail that I know is pretty flat and easy for me. Anything that has an incline is super hard and our kids are pretty athletic and in shape.
We have a daughter that's 17 and a 15 year old and a 11 year old son. And so it's hard to keep up with them no matter what, but it's really hard. And they're all really good about understanding what's going on. But yeah, the hiking has just been kind of put off. Boating. I, I don't know if I can ever give up boating.
I just kind of deal with it. We have a bimini top on our pontoon, so I just make sure that I have my electrolytes and my salt pills with me, and everybody knows that mom gets a shady spot all the time on the boat. So and camping. We usually only get to do a couple trips the summer for camping cause we're so busy. But yeah, we, we still try to get that in.
[00:15:21] Jill Brook: Oh, that's good. So it sounds like your family's pretty supportive.
[00:15:25] Katie: Yes, they're really amazing. My husband's been by my side through all of this and he's my best friend. He's a coal miner and he works really long hours. He works a rotating schedule of days and nights. So when he is working, he is kind of non-existent.
He is just me and the kids, and so it's. It's kind of a struggle a lot. When I'm not feeling good, everything's on me. And I know he feels really bad about that when he's gone. But then when he is here or when he gets off, he always makes time to help me out when I don't feel good. A lot of times he'll come home and rub my legs.
My legs always hurt really bad and he makes time to do those kinds of things and plays with the kids. Our youngest is, you know, he's one of those at the moment his feet hit the floor. He is, he has energy until he goes to bed at night. So, yeah, he's always out playing catch with him. And so I'm really, really thankful for that.
And our, our daughter is the caring type who like, if I'm out doing hair, I'll come home and she's cleaned the whole house and has made dinner, so
[00:16:46] Jill Brook: Wow.
[00:16:47] Katie: that's amazing. And our other son, he's really good with our dogs. He'll take the dogs for a walk and everybody helps in their own way, you know, and I don't even have to ask them.
So I think that's what the greatest thing is.
[00:17:01] Jill Brook: Oh, that's so nice. Now talk a little bit more about doing haircuts, because that's normally like a major standing situation
[00:17:12] Katie: Yeah.
[00:17:12] Jill Brook: right? How has that been for you?
[00:17:14] Katie: It's getting more and more challenging and I'm like, almost like don't want to talk about it just in case my clients listen because they feel bad about it already. And I don't wanna lose any of them, but they know that I love them and they know that I need them too. So it's hard to stand in one place for that long, like doing a color and a cut takes at least two hours. So I never knew why when I'm blow drying a client's hair, why I'm turning to like just a sweaty mess while their hair's getting dry and beautiful.
Why my face is turning red and I'm sweating profusely and getting dizzy. It all makes sense now. It's just amazing when you get a diagnosis, how you're like, wow. My life actually makes sense to me. Like all these aha moments, you know? But yeah, that's been a really big challenge. That's like the hardest part for me is just standing in one spot and blow drying their hair with the heat and everything, that's really, really hard.
And a lot of my clients are like, I don't want you to do this anymore. I'm gonna go find someone else. And I'm like, no, because if you don't use me as your cosmetologist, then I can't pay my medical bills.
[00:18:37] Jill Brook: Yeah,
[00:18:38] Katie: It's like a catch 22. You know?
[00:18:40] Jill Brook: yeah, yeah. So what gives you strength to cope with all of this?
[00:18:45] Katie: I always say my kids and my husband like, They're everything to me and they give me hope and strength and I know that they're watching me and I know they're gonna have challenges in their life. And, you know, EDS is hereditary. Like it's 50 50 chance that they could have it. And I don't know if any of them do yet, but if they do, I want them to know that they can make it through life. And if they want to I know that, you know, some situations it makes it really hard to where people can't work, but if you remain positive, a lot of things are possible, you know, and I try really, really hard to keep that positive, bubbly personality because I, I just know they're watching me, you know?
And I just want them to remember that I was always happy and positive.
[00:19:48] Jill Brook: Oh, that's so nice. do you feel like POTS, EDS, MCAS has taught you any life lessons?
[00:19:54] Katie: Yeah. Feel like it's taught me that. Like before, we were always so busy and on the go all the time. Our kids were involved in so many things and, and we were too. But now we've like slowed down and I I'm like such a go-getter too. I still am, but this has forced me to slow down and realize that it's okay to take a break.
And listen to your body, even though sometimes I don't want to. It's really important to listen to your body and just slow down and enjoy life. You know? Just because like the rest of the world is so busy, it doesn't mean you have to be, it's okay to just enjoy the simple things in life.
[00:20:40] Jill Brook: Nice. So what makes you really happy these days?
[00:20:44] Katie: definitely Painting. Enjoying my family and I've really been enjoying advocating for all my chronic illnesses. And for others, I've opened up a social media account just advocating for all my chronic illnesses and bringing awareness to all of it. I think that's really, really important and.
It's made me really happy. At first I was a little scared to be so vulnerable about it all, but I think it's really important to get information out there because when I was first diagnosed with EDS in 2014, like there was one book I could find about it, and now there's so much more information and it's just really important for people to realize that invisible illnesses look like this. You look, look normal, you know? So yeah, advocating and bringing awareness has brought me a lot of happiness.
[00:21:43] Jill Brook: That's great. Can we do a speed round where you just say the first thing that comes to your mind?
[00:21:48] Katie: Yes.
[00:21:49] Jill Brook: it doesn't even have to make sense.
[00:21:51] Katie: Okay.
[00:21:52] Jill Brook: What's your favorite way to get salt?
[00:21:55] Katie: Okay. Pickles.
[00:21:57] Jill Brook: What's the drink you find the most hydrating?
[00:22:01] Katie: Raspberry salt, L m N T,
[00:22:04] Jill Brook: What's your favorite time of the day and why?
[00:22:08] Katie: 1:00 PM because I get to like, relax and take a nap. That's my nap time.
[00:22:15] Jill Brook: Where is your favorite place to spend time and why?
[00:22:19] Katie: I really enjoyed being out on the back patio, even though it's not great for me anymore. And I love being on our boat too. That's a good place.
[00:22:31] Jill Brook: Nice. What is one word that describes what it's like living with a chronic illness?
[00:22:37] Katie: That's a hard one. Exhausting.
[00:22:39] Jill Brook: What is some good advice that you try to live by?
[00:22:43] Katie: Take it easy. Slow down, slow, slow down in life.
[00:22:47] Jill Brook: What is something small or inexpensive that brings you comfort or joy?
[00:22:54] Katie: My Chapstick
[00:22:55] Jill Brook: Oh, who is someone you admire and why?
[00:22:59] Katie: My husband because he's always been there for me. He works his butt off and he's just been like my strength through all this and my rock.
[00:23:10] Jill Brook: Do you wanna say his first name so we can all send some love and appreciation his way?
[00:23:14] Katie: His name is Nevin, like Kevin, but with an N.
[00:23:18] Jill Brook: Nevin, you're the man. We appreciate you. Okay. What is something that you're proud of?
[00:23:24] Katie: I'm definitely proud of my art and cosmetology career. And my positivity that I've kept throughout all this.
[00:23:36] Jill Brook: What is the toughest thing about POTS?
[00:23:39] Katie: I would say the dizziness and how like my extremities are always so cold. That's really hard for me, cuz then that causes joint pain too.
[00:23:52] Jill Brook: What's an activity you can enjoy even when your body is feeling pretty terrible?
[00:23:58] Katie: Binge watching shows,
[00:24:00] Jill Brook: What helps you fall asleep, if anything?
[00:24:03] Katie: muscle relaxers.
[00:24:05] Jill Brook: Mm-hmm. What gives you energy when you need it?
[00:24:08] Katie: Oh, probably LM n t.
[00:24:12] Jill Brook: Mm-hmm. What is something that you're grateful for?
[00:24:16] Katie: My family.
[00:24:17] Jill Brook: Okay. I just have a couple more questions. What do you wish more people understood about chronic illness?
[00:24:24] Katie: It's unpredictable and we never know how we're gonna feel. So Like if we have to cancel plans, you know, I just think that people don't understand that part of it. Yeah, it's unpredictable.
[00:24:37] Jill Brook: And last question. Is there anything you'd like to say to your fellow POTS patients out there who might be listening?
[00:24:44] Katie: Yes. Definitely try to stay positive no matter how hard it gets. And to remember that you have to always advocate for yourself because no one else is really going to do that for you.
[00:24:56] Jill Brook: Good. Good advice. Well, Katie, thank you so much for sharing your story and your insights with us. We really appreciate you and your family, and I know everybody listening wishes all of you the best going forward.
[00:25:11] Katie: Thank you Jill, and thanks for putting on such an awesome podcast. Like I listen to every single one, and you're doing amazing work for everybody and bringing awareness.
[00:25:21] Jill Brook: thank you so much. I don't do very much. It's all the amazing people who come to share their stuff, but thank you and thanks for being one of them.
[00:25:28] Katie: Thank you.
[00:25:29] Jill Brook: Okay, listeners, hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.
