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Podcast

Navigating Psoriatic Arthritis in Alaska: Dawn’s Story

4 months ago
43 min read
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Summary:

What’s it really like to live with psoriatic arthritis—especially in a place as unique as Anchorage, Alaska?

In this episode, Cheryl sits down with Dawn, who shares her journey of being diagnosed with both psoriatic arthritis and generalized pustular psoriasis. From navigating a complicated healthcare system to managing symptoms in a remote location, Dawn opens up about the real challenges she’s faced, and the tools that help her cope.

Together, Dawn and Cheryl explore what it takes to live well with arthritis, from finding the right medications and building an exercise routine, to advocating for yourself and embracing self-care. Dawn also reflects on the power of mindset, gratitude, and simplifying life to focus on what truly matters.

If you’re feeling overwhelmed by your diagnosis or unsure where to start, this conversation is full of down-to-earth wisdom, encouragement, and hope.

Episode at a glance:

  • Dawn’s Journey: Dawn shares her psoriatic arthritis diagnosis story. 
  • Life in Alaska: Dawn and Cheryl discuss the unique challenges of managing healthcare in Alaska. 
  • The Power of Exercise and Movement: Dawn shares how movement plays an important role in managing her symptoms. 
  • Mental Strength and Resilience: Dawn and Cheryl discuss tools and strategies for mental strength and resilience. 
  • Working in the Medical Field with Chronic Illness: Dawn shares her background in the medical field and how it shaped her approach to chronic illness.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Dawn Kowal

I have Psoriatic Arthritis and Gastroparesis.  I have worked in a medical laboratory/inpatient hospital setting for 21years. I live in Anchorage Alaska.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

  • Links to things mentioned in episode or additional listening
  • Speaker links: 
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  • Cheryl’s Arthritis Life Pages:

Full Episode Transcript:

[00:00:00] 

[00:00:05] Cheryl Crow: I am so excited to have Dawn on the Arthritis Life Podcast today. Thank you so much for coming. 

[00:00:16] Dawn Kowal: Thank you. Thank you for having me. 

[00:00:18] Cheryl Crow: Yeah, absolutely. So just to get started, can you let the audience know: where do you live and what is your relationship to arthritis? 

[00:00:26] Dawn Kowal: So I live in Anchorage, Alaska, and I’ve been diagnosed with psoriatic arthritis and generalized pustular psoriasis, which goes with it.

[00:00:37] So I get a lot of the blisters and things like that on my hands and my feet. 

[00:00:43] Cheryl Crow: Okay. Wow. And I would love to know more about, you know, what was your diagnosis experience? How old were you or around how old were you? And was it easy or was it hard to get your diagnosis? 

[00:00:57] Dawn Kowal: So looking back, I would [00:01:00] say that somewhere around the age of 30, I had what I know today as dactylitis, where all of a sudden the first part of my pointer finger on my right hand just got huge and swollen and red for no reason. And I did go to a doctor and they said, oh, it’s, it’s probably gout. And gave me some anti-inflammatories.

[00:01:24] Moving through the years, I would randomly have times where I was completely exhausted and lots of body, just malaise, just really like that. But I had two boys, one year apart. That kept me very, very busy. I was a stay at home mom for 13 years. So there were times definitely looking back that I knew something was going on, but didn’t quite know what it was. I didn’t really, I would raise it maybe to a provider, but it was pretty much dismissed.

[00:01:57] I’ve had two hip replacements. [00:02:00] I, after, let’s see, what age was I? About probably 35. They did find some issues with my back, but they said, really, it’s not your back, it’s your hips. So definitely a lot of little things here and there. Looking back at lab work I had anti-inflammatory or inflammatory labs that were elevated.

[00:02:22] I am an Energizer bunny by nature, and, and so I’ve been dismissed a lot as, oh, well, she just does it. 

[00:02:33] Cheryl Crow: Oh, wow. I, I was, I think it’s such a double-edged sword sometimes when you push through the fatigue, when you’re able to keep functioning. Yeah. It’s almost like you get punished for that.

[00:02:45] ‘Cause I’ll say, well, if it was really bad, I remember a doctor said that to me once, I don’t think I’ve ever even shared that in the podcast, that she said, well, if it was really bad, you wouldn’t be able to keep going to school and I’m like, well, okay. I thought I should be rewarded for still [00:03:00] persevering, right? 

[00:03:01] Dawn Kowal: So the end of my diagnosis happened in May of 2023 

[00:03:09] Cheryl Crow: Oh, wow. 

[00:03:09] So it was a long time to a long 

[00:03:11] Dawn Kowal: time. 

[00:03:12] Cheryl Crow: Yes. 

[00:03:13] Dawn Kowal: So I got pneumonia really bad. I was very, very ill and my that seemed to have triggered the big, okay, you definitely, this is what’s happening. The psoriasis, the, my anti-inflammatory, or excuse me, I say that inflammatory results in my labs were sky high.

[00:03:34] My CRP and my said rate were sky high, my blood counts. A lot of things were so off that they actually sent up for a pathological review saying what’s going on with this patient? But that triggered the psoriasis part. So I had had little plaque spots here and there, but I live in Alaska. It’s cold and it’s [00:04:00] dry, so you could get these little rashes here and there.

[00:04:03] But that triggered a very huge nope, something more is going on. So, my primary care provider referred me to rheumatology in August of 23, but they let me know because it’s very difficult to, to find a rheumatologist here. In August, they let me know that they wouldn’t be able to see me till May of 2024.

[00:04:32] That was the soonest I could be seen . but thankfully they contacted me and in November, so going back to November, 2023, I was able to get in and thankfully, it was, it’s a PA in the rheumatology clinic here. First thing she said is, so she looked at me just physically and said, oh, you really look like you don’t feel good.

[00:04:59] And I said, [00:05:00] I really don’t. That’s the truth. And then she said, let me see your hands. And she looked at, am I want specifically, I wanna look at your nails, can a nail changes? Have you noticed? I said, oh, definitely. I had pitting nails. I. Fingers were turning, things like that. And then she wanted to look at my skin and, and sure enough these spots that people would say to me, oh, your arm is so red, your elbow.

[00:05:30] And sure enough, she, she said right away, I am fairly confident because as you’re aware, it’s not diagnosed in blood work other than the inflammation. It’s a sight, it’s, it’s what’s going on. You know, with your symptom. The other thing that was happening, because what I know is if I stay down, so if I lay down and chill out, I’m far worse than if I get up and I move.[00:06:00] 

[00:06:00] And so I told myself, for whatever reason in my brain, I knew I had to get exercise, so I would do water aerobics, but I added a trainer, personal trainer two days a week. And another thing that was a huge thing that was happening that I had gone into ortho for is that my bicep muscle would swell so much that I called it a Popeye arm.

[00:06:26] I couldn’t even straighten it. Well, turns out that the psoriatic arthritis can inflame tendons and ligaments. 

[00:06:37] Cheryl Crow: Yeah. I think that you’re showing a key difference between like rheumatoid arthritis, what I have and psoriatic arthritis. What you have is, I mean, it’s, there’s always overlap. Like the Venn diagrams can overlap, but typically RA swells from the very inside of the joint outward.

[00:06:58] Both: Mm-hmm. 

[00:06:58] Cheryl Crow: Versus the tendons and [00:07:00] ligaments getting, getting involved. So, right. I’m so sorry you had that. That must have felt so uncomfortable. 

[00:07:07] Dawn Kowal: It was crazy. I couldn’t, I was like, I should be moving, but then this is what happens. And so since I started my different treatments yes, I, obviously I’m sore.

[00:07:20] Yes, I swell some, but nothing like, like that at all. 

[00:07:25] Cheryl Crow: And I, I, this is, sorry, this is just the OT in me. Did when you were 35 and you got hip replacements. What did they say was the reason for that? 

[00:07:37] Dawn Kowal: Oh, I’m sorry. I had a congenital hip dysplasia on one side, which is kind of funny to me because I was, I did every sport you could imagine, and it was all, you know, everything.

[00:07:50] If I would have knee issues, it was always dismissed, you know? Oh. If you’re fine. They never did x-rays until I complained about my [00:08:00] back. They said, oh my gosh, look at this. How did you not know this? 

[00:08:03] Cheryl Crow: You’re actually, strangely enough, you are actually the second person on this podcast who’s had double hip replacements from congenital hip dysplasia.

[00:08:11] Because I had Carrie on episode 1 47 and similar thing to you. Not only did she have double hip replacements in, well, in her case, very, really early forties, but she also had had it done after having two kids. 

[00:08:25] Dawn Kowal: Yeah. That I did too, 

[00:08:26] Cheryl Crow: which in my mind, I think. Wouldn’t that have come up? Wouldn’t that have somehow come up?

[00:08:32] It can be instructive to look at those cases and say, did, did nobody take the time, like in your case, to start putting these puzzle pieces together? So, just, I’m just glad that you got eventually the accurate diagnosis.

[00:08:43] Dawn Kowal: Oh yeah, me too. Yeah, totally. 

[00:08:45] Cheryl Crow: Yeah. And you, you alluded to treatments. I would also love to hear what have been some of the highlights or lowlights of your treatment journey?

[00:08:53] Dawn Kowal: So. Since it’s been since November of 2023, where I started, I would definitely [00:09:00] say the medication journey is my low light. The highlight in there is sometimes finding something that definitely I can say works. I started is it okay to say the medications I’ve done? 

[00:09:14] Cheryl Crow: Yes. ‘Cause people always wanna know when they, when their doctor prescribes something, they wanna just know a human being has, who’s tried it. So go, go ahead. 

[00:09:21] Dawn Kowal: Yeah, so I, I started with methotrexate, I think that’s the golden stamp one, methotrexate and then added Humira and then did Hyrimoz.

[00:09:35] And I actually had a huge reaction to Humira and Hyrimoz Where that’s when I got the pustular, it brought that out. And as you’re aware, sometimes that can happen. 

[00:09:53] Cheryl Crow: Yeah, it’s one of the rare side effects, but it’s really devastating. Yeah. 

[00:09:58] Dawn Kowal: Oh, it, it was bad. [00:10:00] And fortunately, I, I didn’t get it on my face or, you know, it was on my hands, on my arms and stuff.

[00:10:08] Then we switched off of that and went on Refinamide and then added Rinvoq. So I’m off of everything now except Rinvoq, but I’m going to transition to Cosentyx because the Rinvoq helped. But my provider wants to go to Cosentyx to make sure to keep the pustular part at bay because it keeps reoccurring.

[00:10:42] Cheryl Crow: Okay. Okay. So, yeah. And is it working at least to control some of the disease activity, like the current, or is it, it’s hard to know, right? I always say, say, yeah, I don’t know how bad it would be if I was unmedicated, 

[00:10:58] Dawn Kowal: for sure. And [00:11:00] that’s where, that’s where I’m at. I have to ask myself sometimes what’s worse?

[00:11:05] The disease or the medication. But I will tell you that even though as you’re aware, you still feel extra tired at times, you hurt, you feel swollen. The fact that I can actually get out of bed and walk down my stairs in the morning without feeling like a robot ’cause I hurt so bad. Yeah, that’s the big difference.

[00:11:33] Cheryl Crow: Yeah, a a hundred percent. I mean, I’ve been really lucky to not have really any, any major side effects of the medications that have, so they’ve, for my body, it’s been a no brainer. Like I have to have them ’cause it, even if I have to take a one week holiday of my medication for like vaccinations and stuff, it’s oh, I start feeling it, you know?

[00:11:51] But I think, but you’re right, the equation is different when you have side effects than you’re really having to weigh pros and cons.

[00:11:59] Dawn Kowal: Of course you [00:12:00] insert prednisone along the way. Yeah. And thankfully I haven’t needed it for a little bit when I had my first massive flare of the pustules. They didn’t wanna use it because of rebound effect, but then.

[00:12:16] It just was so bad that they said, we’re gonna have to take the chance. And thankfully, within three to four days it really tampered down those blisters. 

[00:12:27] Cheryl Crow: Oh, that’s so, I’m so glad to hear that. Yeah. It sounds sounds so painful. And you know, I think for anyone listening who might be newly diagnosed, just know that it is common to have to pivot a little bit in your medication plan. I know people who they started on methotrexate and they are still on it 5, 10, 15 years later, and that’s their only medicine. Other people like you and I and a lot of people on the podcast you know, I’ve had more winding journeys like 

[00:12:57] Dawn Kowal: mm-hmm.

[00:12:58] Cheryl Crow: Well, and I, one of the things [00:13:00] before I have anyone on the podcast, I always like to ask, you know, what are you the most passionate about sharing with a patient audience of other, other people who are living with this condition. One of the things was the importance of advocating for yourself, which I still find hard to this day at times.

[00:13:17] So how, how, I’d love to hear more about, you know, how have you learned the lesson of the importance of advocacy. 

[00:13:24] Dawn Kowal: Well, I guess at this point it’s the look back piece of, wow, I probably should have spoke up more. And I really stand by, the people have no idea. Like they look at me and they see me as this go-go person who can do all of these things when the truth is, you know, there’s, there’s miserable times behind that.

[00:13:50] And so I think probably, looking back, I wish I would have spoke up more. I think though that unfortunately we get labeled as, [00:14:00] oh, they’re just, you know, making things up or wanting attention. And because I work in the medical field and even though when it all started, I was not in the medical field and I, so that was, I was home for 13 years, so I didn’t start back to work until 20 years ago. So I have been in the medical field that long and it’s a stereotype, and so I think if I could say anything to anybody is, is, is if your Spidey senses are telling you and you’re having all these different things definitely speak up.

[00:14:37] Cheryl Crow: Yeah, I think that’s so important and it’s, it’s a very strange, kind of bittersweet experience to have health providers experience when you’ve also been a chronic illness patient. ’cause you unfortunately get to see some of those things you mentioned like stereotypes that providers might have. Can you share just really quick for context, what is your job? 

[00:14:58] Dawn Kowal: Oh, I work in, in [00:15:00] a laboratory. Okay. I’m a pre a pre analytical supervisor. I am a supervisor of the phlebotomy team, so, oh.

[00:15:07] We take care of the, the inpatient world, emergency department, and then myself and my team, I have to get everything ready for testing, so that could be tissue, any, anything that comes outta the body. 

[00:15:18] Cheryl Crow: And I think so, yeah. Looking back, I, I would a hundred percent agree with you in my journey too. I wish I had spoken up more. I think I think. As a woman sometimes also it can be you, you feel like, oh, I don’t wanna just seem like I’m just whining, or I remember thinking that you know, after having my son, luckily I’d already had my diagnosis, but I also, I found it very confusing.

[00:15:39] I don’t know if this is the same for you after having two, your two kids, but not knowing, well, I’ve never had a kid before, so is my body feeling this way? Because that’s what everyone feels crappy postpartum. Totally. Totally. Yeah. Totally. You don’t know, right? Well then 

[00:15:54] Dawn Kowal: I, I ended up with gastroparesis in 2007 or so.[00:16:00] 

[00:16:00] And again, dismissed. Totally dismissed, couldn’t eat, the whole thing. So sick. Nauseated. I ended up getting I referred my own self to Virginia Mason. , I, I wrote in my own letter and I, I got my own results at that time and I sent them to them and they looked, I guess they said as a panel every month or something.

[00:16:26] And one of the providers there said, yes, we we can help this person. We’re pretty sure what’s wrong. And I lost like 40 pounds or something. So I ended up down there and they said, yes, it’s gastroparesis, and here’s your options. So I’ve also been battling. That often when gone through those different treatments.

[00:16:46] So yeah. 

[00:16:47] Cheryl Crow: What, what gave you the courage, do you think, to, to advocate that way? I didn’t even, I got diagnosed with gastroparesis, also the same year I got, or a year before I got diagnosed with RA but I didn’t even know what it was, so I wouldn’t even, I just knew [00:17:00] something was wrong with my stomach.

[00:17:01] I thought I had stomach cancer, but no. You just knew, just you are like, you just knew that conviction deep down something’s wrong. Someone needs to help me. 

[00:17:09] Dawn Kowal: Yeah, right. Here you are trying to, at that time, my kids were in high school and I was working then, and you’re just so sick. Like, you know you have it.

[00:17:20] You are so nauseated, you can’t eat and you’re losing weight. And the gastro doctors are saying you’ve gotta eat. It’s like, yeah. So anyway I just finally decided, you know what? I don’t know. I, I just said something has to change and that, and I did that myself. 

[00:17:39] Cheryl Crow: Yeah. Yeah. I think that’s such a great testament.

[00:17:42] There’s probably someone listening right now who’s going through something similar where they’re just like, I can’t wait any longer for someone else to like to figure it out, I have to take charge. And unfortunately that is how our healthcare system works a lot of times.

[00:17:56] If you don’t know, I realize I always try to define terms [00:18:00] medical terms. So gastroparesis tech, like officially in terms of the root of the word is like stomach or gastrointestinal system paralysis. Right? It doesn’t have, but it doesn’t have to mean complete paralysis. It just, in another word for it is delayed gastric emptying.

[00:18:14] Yeah. So like in my case, when I did a gastric emptying scan in 2002, it showed my stomach. Empties five times slower than a normal person’s. So it just means that you get full easily, not just, it means that you get full easily and the food doesn’t move along the tract very fast. And so, it leads to, like you mentioned, nausea, just feeling crummy and even malabsorption issues sometimes.

[00:18:37] Dawn Kowal: Right. 

[00:18:37] Cheryl Crow: So that’s the test for that is a gastric emptying scan. And also I’ll put a link on the show notes to what gastroparesis is. And also gastroparesis falls under the umbrella of dysautonomia or disorders of the autonomic nervous system . And so, people with RA I did not know this until a decade after my diagnosis, people with rheumatoid arthritis, psoriatic, other inflammatory forms of arthritis are [00:19:00] more likely to have dysautonomia as well.

[00:19:02] So it’s something to, to add to your list of, oh, I’m not just being paranoid, like maybe there’s actually something else going on. Do, do you take any treatment for your gastroparesis or just life, lifestyle?

[00:19:14] Dawn Kowal: Not now. I did use Reglan and of course that medication is not looked upon, so I just know how to control it by the way I eat and making sure I eat the right food so that I can, I don’t get constipated. 

[00:19:29] Cheryl Crow: Yeah, yeah.

[00:19:30] Dawn Kowal: So I have a whole system. 

[00:19:32] Cheryl Crow: Yeah, me too. Yeah.

[00:19:33] It involves magnesium. Uhhuh, my friend Magnesium. Yeah, yeah, yeah, yeah. Oh yes. It’s a, it is a tough, it’s a really tough one. I so I, I, again, my heart goes out to anyone who’s had to deal with that. There’s, you don’t, there’s nothing that makes you appreciate your autonomic nervous system more than having a dysfunction in it.

[00:19:53] You’re like, wait, my body used to just do all this stuff. Mm-hmm.

[00:19:56] You know, like I look at people who can just eat whatever they want and be like, [00:20:00] do you know how lucky you are? Do you ever do that? I’m like, what’s it like? What’s that? But I, but also someone else is looking at me.

[00:20:09] There’s so many things I still can do. ’cause I’m mobile and I’m, you know. Exactly. Yeah. So it’s always important to remember, you know, so many things that we can be anyway grateful for as well.

[00:20:20] The other thing I know that you were hoping to chat about and share with the audience today is like the role you mentioned earlier, Aqua exercise, water, exercise, water aerobics. And, and then just in general, what role exercise has played in your toolbox for managing your condition? So I would love to hear more about exercise and also just self-care in general. 

[00:20:41] Dawn Kowal: So it is huge. It is a huge part on my life that I have, I learned with kind of like.

[00:20:48] I unknowingly knew that I had to be doing this, and I have so many things that I’m thankful for because I do [00:21:00] patient care. I see really, you know, little better, so much worse off than me, so I feel very fortunate every single day that I’m able to do this. And so it has helped me stay strong mentally. I learned through personal situations, a brother passing away, having to put a mother in hospice care all around the same time.

[00:21:26] I realized that what it did was, especially the, the training that I do, the personal training, it’s only 30 minutes, two times a week, but it really pushes my brain to a level that yes, you can do that when you think, when I watch my trainer show, say, this is what we’re doing, and I think, are you serious?

[00:21:51] But it pushes me. I have added people who train with me now, and I have also learned that they can [00:22:00] do things more reps than me, or more this or that. And that’s okay. I’m okay with that because the fact that I’m doing it is just the goal. And then with the water, it just speaks for itself. I will never not be in the water.

[00:22:15] It’s salt water, it feels great. Example. Yesterday I had a workout this morning. I was able to get into the pool. I also got a, a dog a year ago, a puppy that makes me get out and walk even in the wintertime. So it is just huge. But I wanna also add that I give myself a day of rest. And so with my job and everything I do to stay active, I recognize that I need a day to just relax and not be go-go and all of that.

[00:22:54] So that’s also very key for me. As far as other things I [00:23:00] do, I’m not outwardly a a church going person or a spiritual person, but at the same time, I do make sure that I do prayers every single morning. And so it, the intent for me is just taking a pause, making that whether you have quiet time or yoga or whatever you do, I might also start my day by stretching.

[00:23:25] I’ve learned that it, again, it takes me five or 10 minutes, but I have to do that to get myself moving. So I think that covers my little platform. . Of what’s important and what works for me and again, I understand at the same time. So if somebody said, I, I can’t do that, because they, they, I would, I would be compassionate and understand that, but I would also try to encourage them to move in some [00:24:00] manner.

[00:24:00] I realize that again, most work out with people that they, you know, they’re very more active and stronger, but I, I do what I can. 

[00:24:12] Cheryl Crow: Yeah, I think that’s so, so important. I mean, I, we, at the time this comes out, you will, people will have heard a story from Riley who talked about how, you know, sometimes it is hard if you’re on social media a lot, which I know you’re not good job having boundaries, but but she was saying that, you know, it’s hard sometimes seeing people with the same diagnosis she has who are like able to run a marathon and do stuff when she has a hard time getting to the mailbox. 

[00:24:37] Both: Mm-hmm. 

[00:24:38] Cheryl Crow: And I, and we talked about how, you know, but we should celebrate, the wins are always relative to what your body can do.

[00:24:44] So if it’s hard for you to get to the mailbox and you went to the mailbox twice in one day, when normally you do it once in one day, that’s huge. Celebrate that. It, you know, don’t compare your, our bodies are just different, even if we have the same diagnosis, right? 

[00:24:58] Dawn Kowal: Yes,

[00:24:58] Cheryl Crow: Yeah, I was gonna [00:25:00] ask, sorry. When you said salt water, is that like an indoor salt water pool?

[00:25:04] Dawn Kowal: Yeah. Okay. Yes, it is an indoor, yeah. 

[00:25:07] Cheryl Crow: I just had this imagining of you, of jumping off of like a glacier in Alaska . I 

[00:25:10] Dawn Kowal: wish I, I, I have, I definitely, I love the water, so I paddleboard, I do that in the lakes here in the summer, and they’re cold. They are definitely cold. Yeah. And cold. A cold does affect me.

[00:25:25] This is a hard place to live. We have a lot of weather happening all the time. We have huge mountains in the backyard. We have an ocean, you know, we have everything. Yeah. But I definitely can tell you that I was just in Hawaii a few weeks ago and my body and my skin really loved it. So 

[00:25:46] Cheryl Crow: my eyes really love Hawaii.

[00:25:48] Yeah. 

[00:25:49] Dawn Kowal: Because the 

[00:25:49] Cheryl Crow: humidity really helps with dry eyes. I don’t know if, do you have dry eyes with your psoriatic arthritis or No, 

[00:25:57] Dawn Kowal: I, not so much dry [00:26:00] eyes. I definitely have, again, your skin. Skin, we never skin and in my mouth and half of my mouth is dry. Yeah. Interesting. I. 

[00:26:10] Cheryl Crow: Well that’s, yeah, sorry, I got, I got this off on, on Hawaii.

[00:26:13] Yeah. Hawaii and water exercise. But yeah, I think whatever. I always say to people that what’s the best exercise for arthritis? What’s the best exercise for arthritis? I’m like, the best exercise is the one that you’re gonna do.

[00:26:25] Dawn Kowal: Exactly.

[00:26:26] Hundred percent.

[00:26:27] Cheryl Crow: Yeah. And it’s the one that you enjoy, you know?

[00:26:29] Yes. But there’s this, for rheumatoid arthritis, they call it the gel phenomenon, which is where the synovial fluid in your joints, if you’re inactive for a long period of time, even just for sleeping, you know, eight or 10. Yeah. 

[00:26:41] Oh, yes.

[00:26:42] Yeah. I think, I think, and if, and if people are listening who are just struggling to find that perfect balance between activity and rest, I, I feel you. Because I think that that’s something that I, to this day still struggle with. There’s times when I feel like, okay, I’m staying in my zone of I can push myself within this zone, and if I go [00:27:00] outside of it, I know I’m gonna be fatigued just ’cause of my sense of my body at this point.

[00:27:04] Because sometimes I, I think I’ve stayed in that just right, ideal zone, and I am, then I still feel bad afterwards . Did, do you ever have those times too? 

[00:27:12] Dawn Kowal: Oh I thank you for bringing up sleep. Sleep is a huge issue and that’s been chronic for me and goes with the pain.

[00:27:20] It will wake me up. I’m horrible, horrible at sleeping, and it is number one. On the list of what’s important for you, what benefits you the most is sleep. And I, I do, I try every which way. Maybe someday I’ll, I’ll be better at it, but it, it’s, it’s a huge problem. 

[00:27:41] Cheryl Crow: Well, there’s only, I think sleep is one of the interesting lifestyle variables where, you know, there’s new, the, the big three people tend to think of with lifestyle are nutrition, exercise, sleep.

[00:27:52] The fourth one being mom, you know, mental health, stress management. Yeah. Sometimes that’s kind of falls, well, it depends on how you put things into, [00:28:00] what buckets in terms of like your non, non-pharmaceutical interventions. But sleep is one where, you know, I have to remind myself what can I control?

[00:28:09] I can control my behaviors before bed, like how much I’m on my phone. Yeah. I’ll leave it to your imagination to guess how much. More than I should be. I’m on my phone and then, you know, my sleep environment, like to some degree I can control the heat, I can control the type of, you know, bedding I have, I can control whether I let my little doggie in the bed.

[00:28:31] There, he’s this, this is my day bed, my office bed. Oh. Have beds. You have a 

[00:28:35] Dawn Kowal: key, a cavalier all yes. 

[00:28:37] Cheryl Crow: He is the sweetest. Yes. They’re so sweet. And then mm-hmm. But I can’t control physiologically if my brain’s going to go into sleep mode. That’s up to my brain, you know? And do I think that that can be what’s so frustrates you?

[00:28:49] Like, I know sleep is important, I’m trying to sleep, but you can’t make yourself sleep. Yeah. Right. So 

[00:28:54] Dawn Kowal: sleep and, and I thank you for bringing up nutrition. And so I know for me, staying away from [00:29:00] sugar is huge. sugar and trying to get, you know, basically the Mediterranean diet for me is the best.

[00:29:07] So I try really hard. Yeah, to stay on that. And then fluids. Oh, and that’s something else with the gastroparesis. You ask me and tell me that I need this much water. The thought of it totally makes me wanna throw up. 

[00:29:27] Cheryl Crow: Yeah. Yeah. Yeah, that’s something, that’s a really good point.

[00:29:31] I just think so many people when they’re newly diagnosed, they’re just like, where do I even start? So, you know, it takes, it’s taken time right? For you to that trial and error, figuring out what is your trigger food, you know, yours might sounds like, is sugar.

[00:29:44] Some other people’s. Some other people do okay with sugar, but then they have a hard time with like dairy I or red meat. Other people, you know, it’s a little bit customized. There are some general recommendations like the Mediterranean style eating pattern.

[00:29:56] The other thing I wanted to ask is, you know, it sounds like exercise and [00:30:00] your, and your kind of daily management toolbox helps you cope. But is there anything else that’s helped you cope with all these ups and downs and it sounds like a pretty demanding job and having kids and just what, what helps you cope?

[00:30:13] Dawn Kowal: I think I just, for whatever reason, I have learned to be so strong in my brain. Mentally I feel very fortunate and I think a lot of it has to do with what I see every day. And I just feel very fortunate no matter what, how I feel. I, I feel like I’m the luckiest person just because I am able to get up, put my feet on the floor.

[00:30:37] And, and do what I do. So I don’t know how or why I, I got this really strong brain that I have. But that, that’s something that I feel very fortunate about. 

[00:30:52] Cheryl Crow: No, I think well what, to me what you’re demonstrating is gratitude. You know, I am, all of the [00:31:00] mental wellness people will say gratitude practice can be so powerful.

[00:31:06] And I think that’s beautiful and that you just kind of learn that on your own.

[00:31:10] Dawn Kowal: Maybe having kids and help me to go through the process of their 34 and 35 now. So raising them and just going through all the trials and tribulations that. I’m not sure how I, I mean, I can take so much in my backpack I call it, where you just throw everything in there and carry it every once in a while.

[00:31:34] It’s, it’ll, you know, everyone’s gonna have their day, everyone’s gonna have their moment where I become emotionally unintelligent. But I supervise up to 30 people and, you know, have grandkids and all of the personal things that happen. A husband of 39 years uhhuh all of it. And I, I think for now [00:32:00] probably for me because the kids are gone. 

[00:32:03] Both: Yeah. Yeah. 

[00:32:04] Dawn Kowal: And so I have my own time at the end, you know, when I get off work I just, I try to take just those moments. 

[00:32:14] Both: Mm-hmm. Mm-hmm. 

[00:32:15] Dawn Kowal: And no matter what I, I’m very thankful every day. We never know what tomorrow’s going to bring. So I think I what I see every day and know about what’s happening. It’s true. So yeah, nothing’s perfect. It is not going to be, but be thankful for. For what you can do and what you do have and don’t have every day.

[00:32:44] Cheryl Crow: Yeah. That’s absolutely beautiful.

[00:32:48] It really is just basic perspective taking, but it’s really easier said than done.

[00:32:56] Like it is. We all know we should, you know, be [00:33:00] grateful for the little things, but I think having accountability partners is. Is golden because I don’t know if your husband is that for you or you know, or maybe your own self. But that for me has been really helpful. I think my mom especially and my husband are good at.

[00:33:17] It reminded me of okay, well you have the, you know, you still have remember to look at what you still have when something’s been hard.

[00:33:24] Dawn Kowal: I do have to, I do, if I am doing morning round collections with my team. Yeah, I pur purposely come in about 20 minutes early and get started ahead of them because they’ve actually said you’re just too much in the morning.

[00:33:41] Cheryl Crow: This is definitely something that would happen to me. Yeah, yeah. Well, 

[00:33:44] Dawn Kowal: I tell ’em, well, it’s how I got my name. That’s when I’m at my best. Yeah, 

[00:33:49] Cheryl Crow: at the dawn, that’s when I was 

[00:33:50] Dawn Kowal: born. Let’s go. 

[00:33:52] Cheryl Crow: Well, a lot of people say that, you know, that mornings are hard for them with arthritis and inflammatory arthritis, but I, I [00:34:00] have always, I definitely feel the morning stiffness at times and morning soreness, but my energy is still better.

[00:34:06] Oh yeah. In the morning for sure. 

[00:34:07] Dawn Kowal: I’m way better. I’m far more that’s just. Yeah. Exhausted and, yeah. 

[00:34:14] Cheryl Crow: Yeah. Yeah. Oh my goodness. Well, just, just for sake of time, first of all, I’m so grateful for you for doing this during your work day, which I know you’re very, very busy. So, onto our kind of, they’re rapid fire questions, but as you know, you bet you’ve listened to the podcast, you know that sometimes they’re not so fast.

[00:34:32] But what are some of your best words of wisdom for someone listening who might be newly diagnosed? 

[00:34:39] Dawn Kowal: So my words of wisdom are to keep a drama free zone. Keep, keep your life as simple as you can. Simple as possible. And again, stay positive.

[00:34:49] So to your point about me, I have no social media. I never have a, a lot of it is because I try to have a private life and keep my [00:35:00] work life very separated.

[00:35:02] And it’s just not something I’ve ever done. But just honestly, keep your life as simple as you can and as drama free. Believehave a lot going on in my personal life with my kid, kids, grandkids, and all of that, but I save the drama. I am just not there. So keep your life simple. 

[00:35:23] Cheryl Crow: My mom started saying this, ’cause this phrase, and I know she listens to the podcast, so hi mom.

[00:35:28] But that, you know, reminding herself like, not my circus, not my monkeys. Totally, I remind myself of that. ’cause I, I have a hard time with self-regulating when I’m like some, like my husband likes, didn’t make a joke about I can’t go to bed yet, someone’s wrong on the internet. Nope, not my, I’m not gonna, even if I never slept a wink the rest of my life, I’ll never be able to correct all the misinformation out there.

[00:35:48] Dawn Kowal: Oh no. 

[00:35:49] Cheryl Crow: Do what you can. 

[00:35:50] Dawn Kowal: For sure. 

[00:35:51] Cheryl Crow: Yeah. I love it. I love it. Do you have a favorite quote or inspirational saying for tough days? 

[00:35:58] Dawn Kowal: So it’s, this is just [00:36:00] goofy. If I have to work very early, so I get up at three in the morning it’s time to make the donuts, 

[00:36:07] Cheryl Crow: so I, I 

[00:36:09] Dawn Kowal: gotta get up. I gotta just go, just so that’s one of ’em.

[00:36:13] I love that. That’s just love that goofy and silly if you know, whatever the donut shop, the little guy anyway. Yeah, yeah, 

[00:36:20] Cheryl Crow: yeah. I’m trying to remember what that was. Yeah. 

[00:36:22] Dawn Kowal: Oh gosh. Dunking Donuts, is that what it was? Oh, probably, 

[00:36:25] Cheryl Crow: yeah. Yeah. 

[00:36:26] Dawn Kowal: Okay. And then the, is the old make lemonade outta your lemons, Joe.

[00:36:31] Yep. It’s gonna be a terrible, and I have a situation with kids. We played competitive hockey and 

[00:36:37] Both: oh boy. And if they 

[00:36:38] Dawn Kowal: would get, not get this team or that team, I’d say, you know, pull those bootstraps up, hook them on tight, and just move forward again, what can you control? 

[00:36:50] Cheryl Crow: Yeah. I feel like that’s another undercurrent of your mental strength.

[00:36:55] This is, this is my arm chair. My arm chair assessment is that you have a good, [00:37:00] sounds like you have a really good sense of what is in your locus of control, what is not, and you’re not spending a lot of time stressing out the things out of your control. And that’s so, 

[00:37:09] Dawn Kowal: no, 

[00:37:10] Cheryl Crow: that’s, that’s wisdom. That’s wisdom right there.

[00:37:12] That’s the sorority prayer. Right? 

[00:37:15] Dawn Kowal: Right. Yeah. Yeah. 

[00:37:17] Cheryl Crow: Do you have, it’s okay if you don’t, a favorite arthritis gadget or tool in your toolbox? 

[00:37:23] Dawn Kowal: I. I would say not off the top of my head, although I do have you know, like stretch bands. 

[00:37:30] Cheryl Crow: Oh yeah. Exercise band. Yeah. 

[00:37:31] Dawn Kowal: So I guess that would be one. That’s how I start my morning.

[00:37:35] I completely stretch. I have learned that my hotspots are upper back or lower, upper back, I’m sorry, between the shoulder blades. 

[00:37:45] Both: Mm-hmm. 

[00:37:45] Dawn Kowal: And anyway, if I’m gonna have a flare, that’s where it shows up in my shoulder and stuff. But if I do those bands, so I literally pull it tight across my waist and whip my arms behind my back and do that, [00:38:00] and then do just a quick stretching and use that band.

[00:38:03] Both: Mm-hmm. 

[00:38:04] Dawn Kowal: That I would say that there’s that. 

[00:38:07] Cheryl Crow: They’re so helpful. I always think of those exercise bands I, because I use them with strength training. Mm-hmm. Yeah. 

[00:38:11] Dawn Kowal: You’re so right 

[00:38:12] Cheryl Crow: that they could be useful for stretching, not just strength training. So 

[00:38:15] Dawn Kowal: stretching, strength training. And then, I have a Thera gun, so Oh, yeah.

[00:38:20] For tightness. That works great if you’re gonna talk about tools, but 

[00:38:24] Cheryl Crow: yeah. you’re like, if those who don’t know, it’s not a gun. It’s No, no. 

[00:38:28] Dawn Kowal: Yeah. 

[00:38:28] Cheryl Crow: Hold a Thera gun, but yeah. 

[00:38:30] Dawn Kowal: Massage 

[00:38:31] Cheryl Crow: gun. Yeah. Massage gun. No, no. I’m just, I, I know what you’re talking about, but I just, yeah. Sorry, I’m just trying to imagine someone listening who’s what are they talking about?

[00:38:37] Oh, I know. All right. Because when I’m listening to certain podcasts, I’m like, what are they talking about?

[00:38:41] Dawn Kowal: Yeah. 

[00:38:42] Cheryl Crow: Do you have a favorite book or movie or show you’ve been watching or reading like lately?

[00:38:49] Dawn Kowal: I do, I love sports. I’m a complete sports junkie. Oh, 

[00:38:53] Both: yay. 

[00:38:53] Dawn Kowal: And so my favorite movie was, remember The Titans. I love Denzel Washington. I think [00:39:00] he’s a great actor and I love the message behind that. 

[00:39:03] Cheryl Crow: So good. Nothing like I’m a soccer player you know, by, 

[00:39:07] Both: mm-hmm.

[00:39:07] Cheryl Crow: By life. I don’t play currently, but Yeah. Yeah. Nothing like a good sports sports movie. What does it, last one, what does it mean to you to live a good life and thrive with psoriatic arthritis? 

[00:39:22] Dawn Kowal: I, like I said, just I’ve had to tell myself just being able to not necessarily keep up with the others that I’m working out with, but just doing it and doing the best that I can do.

[00:39:38] And then sharing my story when it’s applicable and just showing being this person. And then when they do find out, oh wow, you know, you, you have that, but you are able to do all this and just, that’s, I guess, in a nutshell. Yeah. And [00:40:00] I, I am also thankful for my provider. Oh yeah. Who helps me.

[00:40:09] She she’s very good if I make a call and say this or that, you know, so she, I would say she, she helps me thrive, but, and my family. 

[00:40:20] Cheryl Crow: I wonder how many rheumatologists do, do you have a lot of choices of rheumatologists in Anchorage or is there just a handful? 

[00:40:28] Dawn Kowal: It’s a handful. It’s, it’s improved, so, okay.

[00:40:32] It, it was next to nothing and it, and it has improved. So, there’s a clinic, there’s in the one that I go to, there’s probably four or five mDs and then the PA’s below them. And I have seen the MD that, but I really connected with this PA and to have her look at me without anything else and just saying, oh, you just don’t look [00:41:00] like you feel good.

[00:41:01] You know, it’s wow. 

[00:41:03] Cheryl Crow: And so when you you did have a question somewhere in there, like, how did you feel when you were diagnosed? Oh, yeah. How, you know, were you emotional? 

[00:41:10] Dawn Kowal: I was not, I just, I was not emotional whatsoever. I was just like, thankfully I’m gonna feel better. And because I felt I was hurting so bad, I was so exhausted, I was just like, it didn’t matter.

[00:41:30] Finally, someone’s got to it. And when I got the later when I’d ended up with the Pustular outbreak, I just finally looked at her and said, well, I guess she got the diagnosis right, didn’t you? You know? 

[00:41:43] Cheryl Crow: Mm-hmm. Yeah. I, I feel similar that it’s very, it can be a very relieving experience diagnosis. Yeah. It can be, the emotion can be happy or relieved or, or hopeful it doesn’t, yeah. Sad or upset. But [00:42:00] you know, it’s, all of those are valid, especially when you’ve been suffering without knowing why, and then someone tells you why. Oh, and that there’s treatments for this.

[00:42:07] Okay, let’s go. You know, let’s go is right. Yeah. But that’s how I was too. Yeah. Oh my gosh. Well, thank you. This has been so great. You’re welcome. Yeah. Was there anything else you wanted to share with the audience? I feel we got to most of it, but just in case. 

[00:42:23] Dawn Kowal: Nope. I, I think I covered it all. I just I, I do understand that there’s folks out there that cannot move maybe to the level that I do or, and all those things. So I don’t wanna come across as, you know, like I’m an arrogant person here, you know what I mean? I wanna, I’m very compassionate and I, I do understand. 

[00:42:44] Cheryl Crow: Oh my gosh. No, I think you came across great, in my opinion. You never know how people are gonna respond. That that’s one thing I’ve learned through being on social media, that you never know how people are gonna take your, what you share, but your intent is clearly to, you know, share your story and help others [00:43:00] paint a picture in their mind of what life could look like for them.

[00:43:02] , If someone’s on day one or day seven of their, you know, diagnosis mm-hmm. So, and you know, you’re holding down sounds like a full-time job for many years and being able to balance being a mom and you know, doing your exercises and all your activities with that job and so I think that that’s a big question a lot of people have in their head too.

[00:43:23] So, yeah. So thank you so much for taking the time and. If she’s not on social media, like we said, so normally I say, oh, follow up with, you know, my guest on Instagram or whatever. But but if you have a, if you have a burning question for Dawn, I guess you could contact me and then I could filter it to her.

[00:43:38] If she 

[00:43:39] Dawn Kowal: sounds good, I I would be open to whatever. Yes. Totally. Awesome. All right, well, nothing against social media, I wanna say that. Oh, yeah. Nothing against it. It’s just personal choice. That’s all. 

[00:43:50] Cheryl Crow: No, and it’s, yeah, I mean, it’s how the majority of people find out about this podcast. I don’t do any currently, like external marketing or anything. So I definitely am need social [00:44:00] media for, for getting the word out about, about my work and everything. So, yes. So, but thank you so much for your time. Yeah. And we’ll talk to you later. Bye-bye for now. Thank you. 

[00:44:10] Dawn Kowal: Bye-bye. 

[00:44:10] Cheryl Crow: Bye.[00:44:12]