Chronically Living and how to make the most of it

Undifferentiated Connective Tissue Disease with special guest Danielle Julius-Williams

May 03, 2021 Kelsey, Danielle Season 1 Episode 45
Chronically Living and how to make the most of it
Undifferentiated Connective Tissue Disease with special guest Danielle Julius-Williams
Show Notes Transcript

This week I had an amazing conversation with fellow Undifferentiated Connective Tissue Disease warrior, Danielle Julius-Williams. We got to see similarities in our experiences, as well as differences, highlighting that the same autoimmune disease is experienced differently by each person.
In this episode we talk about:

  • what UCTD is
  • diagnosis stories
  • using exercise to control symptoms
  • different modes of coping

Guest Bio:
Danielle is a full time mom of 2, who was diagnosed with UCTD during her second pregnancy. She is very active in the parenting community, and challenges how society views mothers and their bodies.

Follow Danielle on Instagram @fitbyflawless

Kelsey Harris:

Welcome to the chronically living and how to make the most of it podcast. I'm Kelsey Harris, a chronic pain warrior here to inspire hope and strength to the spoonie community, get ready to lift each other up and find ways to live the best life possible. Hey, everyone, thanks for tuning in to another episode of chronically living and how to make the most of it. Today, my episode is a little different than normal. It is a conversation that I recorded between myself and Danielle who is another person with undifferentiated connective tissue disease or you CTD like myself. So this episode is really close to home for me, it was so cool to get to share about our similar yet different experiences with you CTD. We were talking a bit after the episode a while as well about like how broad a range it is, for people with different symptoms of use CTD much like other autoimmune diseases, actually in that sense. So anyways, I'm really excited for you guys to listen to this episode and check it out. Hey, Danielle, welcome to the podcast.

Danielle Julius-Williams:

Thank you for inviting me. I'm excited.

Kelsey Harris:

Yeah, me too. Um, we were just discussing for a moment before we hit record that, like it's so nice to interact with someone else with undifferentiated connective tissue disease.

Danielle Julius-Williams:

Yeah, honestly, I, I literally haven't been anybody else with it. It's, it was very new to me. That's for sure.

Kelsey Harris:

Yeah, I had one other person reach out to me on Instagram. And I reached out to you, but like, it's it's so rare that and most people don't even know what it is.

Danielle Julius-Williams:

I literally didn't even know what it was. And then so to hear that somebody else has it. And I'm not the only one. It feels great. Right? Yeah. Um, so I don't know what you're, like, how you explain it to people, but I kind of like it's like lupus, but not as severe. Honestly, I don't even know how to explain it to people, even to this day. It's still kind of new to me. But I just literally, as soon as someone asks about it, I just go into the whole birth story of my second basically and how I even found out.

Kelsey Harris:

Okay, well, now you've got I'm curious. So how did you get diagnosed with it?

Danielle Julius-Williams:

So, um, when I had my anatomy, ultrasound was my second. First, I should actually start off by saying my first one was born perfectly, you know, first pregnancy ever, sunshine and rainbows. It was fantastic. Second one, I had my anatomy ultrasound. And they basically my ob said, there's something that I need to get a second opinion about. I'm wanting to stay very positive about things. So I'm like, oh, because my first one was born with an extra digit. So I thought that it was just that. I was like, Okay, the next day Sick Kids calls me like Sick Kids in Toronto calls me. And they're like, you need to come in and told me where to go the day. And this was, so I ended up going for an appointment the next day. So literally, from my ob, to sitting in cardiology at sickkids. It was two days. And they basically they did an ultrasound, and they sent me this depressing room with a heart sculpture. And they were like, yeah, so basically, the baby has a leaking valve and are hurt and inflammation of the heart muscle. And they said, usually it's caused by people who have autoimmune diseases, like lupus and stuff like that. Do you have anything? I said, No, I've never been diagnosed with anything. And they said, like, how was your first pregnancy as a strong, strong rainbow? Like I explained, and they were like, you know what, this is very rare. And you know, you need to see a rheumatologist. You know, get your blood looked at and stuff like that. Figure out what's going on with you. In the meantime, we'll treat the baby and make sure that babies or at least try our best to make sure that the baby's born healthy. So I mean, so I started rheumatologist, Sick Kids actually tested my blood. And they said that my antibodies were higher than they can even count. I was like, Okay, this is interesting. And then, and then like, even throughout my pregnancy, like I had to do an IV treatment every two weeks. They put me on steroids to help reduce inflammation in our heart. So it maybe gained like 65 pounds. And I wasn't allowed to work out it was considered high risk so I wasn't allowed to work out or anything like that. So I had to start like cold turkey. And then yeah, but then like in the end, she ended up being born with just a little bit of inflammation and she was on the steroids for a couple months, and now she's perfectly fine. Okay, so she didn't need any surgery or anything like that a pacemaker, nothing, which was fantastic. Yeah, I know, right. So now with all the weight gain that I gained, it was it was really hard on my joints, because I've always been petite. So getting 65 pounds was a lot and I was getting like 10 pounds every two weeks. So yeah, like I just started working out as soon as I could basically, like, like before, like, Well, during my pregnancy, at least anyways, my joints were killing me. Like my knees were hurting so bad my fingers like my every joint, my finger would stick or like, get stuck all the time, kind of in a hurt so bad. They're always inflamed. Like, I couldn't wear my rings or anything like that. My fingers were so swollen. Yeah, and I was like, super tired all the time, too. Yeah. And I kept saying, oh, maybe my iron is low. Maybe my iron is low. But yeah, but then yeah, and then like, so after I started working out again, though, like, I was pretty much back to my old routine. And, and I saw my rheumatologist after and he was like, do you have any of the symptoms that you had before? I'm like, No, nothing. Like just the, you know, like, even the joints like nothing. I feel completely fine. I don't have any issues. Knock on wood. But yeah, like, there's nothing going on to like, Okay, so we're gonna diagnose you with undifferentiated connective tissue disease. And like, I don't know what that is, you're gonna have to speak to me in English a little bit. And he's like, basically, it's just like, little bits of pieces of stuff like that would normally be a symptom of, you know, lupus or anything like that. But they just don't know. I was like, okay, that's reassuring. But now, if I have another one, I'll be prepared to, you know, expect what I expected. What I what I went through with this one, that's for sure.

Kelsey Harris:

Right? Yeah.

Danielle Julius-Williams:

It was difficult. But I do it again.

Kelsey Harris:

I want to give a shout out to Sick Kids. Cuz like, what a phenomenal hospital.

Danielle Julius-Williams:

Yeah, they were absolutely outstanding. Even though even though it was so aware, they were so confident with, you know, the treatment that they were providing and stuff like that they made me feel so comfortable. I never, like, doubted any of the decisions that they were making or questioned any of the decisions that they were making. I just kind of went with it. And you know, thank goodness that I did, because she's the happiest little thing ever. Yeah.

Kelsey Harris:

I um, I lived in Toronto for six years. And I volunteered at sickkids for like two years. And like, it was such a great place to volunteer. First of all, the interaction between the staff and the I just like you could tell that everybody was getting such good care. So

Danielle Julius-Williams:

right? Yeah, for sure. Definitely. It's very family. Family oriented, which was nice.

Kelsey Harris:

Totally. Okay, so then with your uctv, you do get flares, still? Or is it just how you're pretty good right now?

Danielle Julius-Williams:

Honestly, I have a pretty under control. Like I I walk every day between four and 10k every day, given that the weather's nice. And it's been keeping the inflammation down. That's for sure. I have my other than being like, super tired all the time. I haven't had issues.

Kelsey Harris:

Okay, cool. Yeah. So like you I have like, really my anaise when they did my blood test were like, way off the chart. So like that was the CPA like, this is weird. Like, you must have an autoimmune disease. Like, I've never had the swollen joints, but my joints are sore. So I have like more like widespread pain. Fatigue is so similar to you and that sense,

Danielle Julius-Williams:

right.

Kelsey Harris:

Yeah, it's interesting. Like you mentioned, like you exercise a lot, right?

Danielle Julius-Williams:

Right.

Kelsey Harris:

Yeah. And like So do I. And I found that exercise has been one of the most helpful things for me.

Danielle Julius-Williams:

Literally in that in, you know, even when I told my rheumatologist that I didn't have any symptoms anymore. He's like, what are you doing? Like, what are you doing? I need to know and I said I'm still working out. Like I'm literally just going for walks, lifting the baby up and down like But and he's like, okay, just keep doing what you're doing that and he's like, if I don't have to prescribe you anything, that's like the best case scenario, right? So, so it's been good to be in okay.

Kelsey Harris:

Yeah, that's, that's really awesome. Um, how do you feel about having you CTD? Like, do you find that like, affects you at all?

Danielle Julius-Williams:

Honestly, I don't even bring it up unless it comes up in conversation, because people will like, for example, look through my Instagram and say, oh, like you gained a lot of weight when you're pregnant. I said, I know. Let me tell you the story. Especially because it didn't happen with my first it's kind of weird that it just kind of started and I don't know where it came from, per se, because my mom doesn't know if it came from her side. She doesn't have anything. So it's, it's it's the whole situations is weird.

Kelsey Harris:

Yeah, I feel that

Danielle Julius-Williams:

I don't find it affects me or anything. Yeah.

Kelsey Harris:

Yeah, I think I find like, I'm also like, I'm the only person in my family with an autoimmune disease. So it's like, weird. Yeah. But it's also like, it's a weird autoimmune disease, because it's categories even when like, I tell, like, cuz, like, I've seen chiropractors and physiotherapists and stuff and their lifes like so it means we don't know what you have.

Danielle Julius-Williams:

Pretty much, pretty much pretty much, which doesn't help with like, you know, feeling like what's the word I'm trying to find? It doesn't make you feel certain about what's going on. That's for sure. Or, like, I can't think of the word I'm trying to find. But, um, someone had asked me once, if it scares me. I was like, No, no, really. Like, I always I always like to think the best of situations like even when, like I said, even when I was sitting in cardiology, I wasn't putting two and two together. But I never usually I just, I just don't innocence receive the fact like, obviously, the blood cow, you know, like the, the antibodies in my blood show different things, but I never really, like accepted it.

Kelsey Harris:

Okay,

Danielle Julius-Williams:

per se, if that makes sense. I don't know if it helps. But I, but I told her I was like, No, no, I'm not really scared or anything like that. And like, and other some of my other friends that are especially like having, you know, third and fourth kids. They're asking me if I'd have more, and I said, Yeah, 100% more. Now I know what to expect for and you know what, I hope I will not help what I need. To better make sure that, you know, the experience is better. At least a little bit better next time. Yeah, cinnamon rolls, that's for sure.

Kelsey Harris:

Yeah, like you're more prepared to do it again.

Danielle Julius-Williams:

Oh, yeah, for sure. Definitely. For sure.

Kelsey Harris:

Yeah, that totally makes sense.

Danielle Julius-Williams:

Yeah.

Kelsey Harris:

Um, what do you I'm just like, I'm curious. It's just so interesting, because we have like, very similar experiences, in some ways, but different than others. So you'd mentioned you don't you don't really, like you haven't really accepted that you have it. And I'm like, the total opposite. I'm like, oh, like, I totally accepted it. And like, that's what makes it okay. So it's like, totally different strategy, which I find really interesting. Yeah, I mean, like, like I said, like, I, I still tell people about it, but I don't go out of my way to say, Oh, I have this. Like, it just comes up in conversation usually. Yeah, that's pretty much that's pretty much it. Like even when I told I told a couple friends that I was gonna be speaking with you today. And they even asked me like, oh, like, Oh, I have this. Oh, I have that. I was like, Oh, I didn't even know that counts. But I mean, you know, it's, I know, diseases are way more common than I think people think especially like, because I didn't really know about autoimmune diseases before. I mean, my my ex's mother looks my ex does mother has celiac. And then like, besides that, I didn't really know much about autoimmune diseases. I didn't even know that they could be passed on. Right, you know, generations or whatever. But you know, it opened a whole new box for me. I didn't realize there were so many different autoimmune diseases like I knew like there were some and like you hear like MS like being more common, or lupus right, but then you don't hear about all these other ones

Danielle Julius-Williams:

right? What is exactly what it is.

Kelsey Harris:

And if anybody's trying to Google what is undifferentiated connective tissue disease, like you won't really get a good answer.

Danielle Julius-Williams:

Pretty much like I even tried to you know, even after my rheumatologist explained it to me, I'm like, I'm still not getting

Kelsey Harris:

My rheumatologist didn't even explain it to me. She says, because she initially diagnosed with lupus. And then she backtracked. She's like, wait, you don't have enough symptoms? And then yeah, and then she just dropped it in conversation, and then like nothing after, and I was like, Oh, so I'll Google this on my own.

Danielle Julius-Williams:

Yeah, pretty much. Oh, my goodness. But yeah, it's, it's even. So I have my sister's in med school. And I even like, had mentioned it to her and it came up in conversation. And she, she even doesn't really understand. Like, I know, she's a little school, but it's like, you know, pieces of the puzzle that just aren't quite clicking. And that's exactly what it is. is what it is.

Kelsey Harris:

Yeah, I guess. So how do you, um, like, help yourself the most physically, do you think it's the exercise that makes the biggest difference for you?

Danielle Julius-Williams:

I feel like it. Yeah. Like, for example, over the winter, I'm not really walking as much, especially outside and stuff like that. Like, I like to hibernate, per se, like, kind of in the winter. I don't like to do a whole lot. And I definitely felt it this past winter with COVID and stuff like that, you know, not being able to do a whole lot. And then I was like, You know what, I don't want to go through that again. So I'm gonna start doing like, even if it's a little like half an hour hour workout. Super easy. Every little bit kind of helps. For sure.

Kelsey Harris:

Yeah, yeah, I think exercise is super important. So what do you What's your exercise routines? Like So you mentioned walking?

Danielle Julius-Williams:

Oh, yeah. So I'll walk every day. I'm literally been walking twice a day because my mom's been staying with me. Because my car's been shot but so we've been walking like twice a day so we'll do like a 4k in the morning and then 4k in the evening. And then if I don't work if I don't go for a walk in the morning I'll do like I'll grab the baby and do like a quick like workout with her. I'll do like like, like a baby benchpress kind of thing. There's like those kettlebells those like kettlebell swings that usually do but I'll do it with the baby yeah you know, like squats lunges, stuff like that. When with the kids push ups they like to sit on my back. It's hard.and stuff like that. Yeah, it's it's it's it's a and then an expensive Wait, for one of them's one of them's 20 pounds. The other one's 30 pounds. I got a variation. variety.

Kelsey Harris:

That's awesome.

Danielle Julius-Williams:

Yeah.

Kelsey Harris:

Cool. Yeah. I also do like combination of walking and weight, but I use bodyweight. So it's kind of similar. Like I don't. Yeah. COVID times.

Danielle Julius-Williams:

Yeah. I mean, like, if they don't cooperate, then I'll just do bodyweight activities, right, but usually, they're pretty good. They're like, This is fun. I'm like, this is not fun for me, though.

Kelsey Harris:

How old are you kids now?

Danielle Julius-Williams:

21 months today is the smallest one and four years old.

Kelsey Harris:

That's awesome.

Danielle Julius-Williams:

Yeah. Yeah.

Kelsey Harris:

Busy and fun.

Danielle Julius-Williams:

Definitely, definitely busy but fun. Yes, definitely. And they keep me on my toes, which is good. Like every time I want to be lazy, they do not allow me to do so. It's good.

Kelsey Harris:

Awesome. But you mentioned that fatigue was something you're still struggling with. How do you kind of deal with that?

Danielle Julius-Williams:

I just try to keep moving. Like even like, pretty much just fighting through it. I mean, I try to take my multivitamins like Yeah, no, that's pretty much it. Like I just try to keep moving I because as soon as I hit like For example, this weekend, I put a movie on on my laptop. And just like I was like, Oh, let me just like lay down. And I just passed out. Like it and it was maybe like, eight, nine o'clock. Like it wasn't even late. And I woke up, I'm like, Oh, well, that movie was great, I guess.

Kelsey Harris:

Yeah, yeah. I also find it's like...

Danielle Julius-Williams:

I just I've just been fighting through it.

Kelsey Harris:

Yeah, if you sit down, right, it's like the hardest thing to get back up.

Danielle Julius-Williams:

Right?

Kelsey Harris:

Um, yeah, I'm, I'm just so one thing I always ask my guests is like, how do you keep making the most of it with with having chronic illness.

Danielle Julius-Williams:

I literally just continue living my day. As if I didn't have it. I just don't think about it. I do what I, you know, keep working out, eat healthy, the girls keep me on my toes. And just make sure that I'm doing what's best for myself, my body, you know, make sure that the girls are okay, obviously, too. But they're not going to be okay. Unless I take care of myself. So I just make sure that, you know, I make sure that I take that time to really make sure that I'm thinking for myself.

Kelsey Harris:

Yeah, I think this is simple. I think that's, that's awesome. And like, yeah, just let that self care that kind of flows out to help everybody else too.

Danielle Julius-Williams:

Right. And you know, especially with being a parent, it's kind of hard to, it's easy, sorry, to forget about taking care of yourself. And I saw it firsthand like what it's like not because I couldn't work out, right. So I and I was eating like garbage. Because I was so stressed out. But I saw like firsthand what, what happens if I don't take care of myself, and how quickly My body is going to react. So I've definitely, it was a huge wake up call and definitely have been paying more attention. That's for sure.

Kelsey Harris:

Yeah. That makes sense. Um, how's your daughter doing now? your youngest one.

Danielle Julius-Williams:

She's great. Like she's so I her one year. So basically, when she was actually, yeah, when she was born, they said that they would have to see her every year until she was 20 in cardiology, and then they saw her at her year appointment, and they said, honestly, if we didn't know her history, we wouldn't. She was a completely normal kid. Okay, awesome. Yeah. I mean, she's, she's literally the happiest baby. So cuddly. She's great. She's fantastic. I mean, both of them are great. But I wanted the first one to do the super cuddly one. But the second one's cuddly.

Kelsey Harris:

That's hilarious. Awesome. Um, if someone came up to you and asked, and they said they were like, recently diagnosed with you, CTD you and asked you for advice? What would you tell them?

Danielle Julius-Williams:

I would say, to pay attention to how they're feeling. Um, you know, the fatigue was a huge a huge thing that changed. For me for sure. The inflammation was big for me, too, for the inflammation also, because of the meds that was on but it didn't really help that there wasn't working out. So I mean, I would say to keep you know, even if it's just for a half an hour walk every day, you know, it's not much do that, you know, make sure that you're not eating like garbage, like sweets and stuff like that. Nighttime snacks were horrible for me. Yeah, it's, it's really just staying healthy, keeping your body as intact as you can, besides all of that other stuff. And then you know, and then at least you're doing as much as you can do for your body. Then everything else just kind of happens.

Kelsey Harris:

Yeah, totally. Yeah, it's just like the basics of healthy living. Right.

Danielle Julius-Williams:

Right, for sure. I mean, it's, it's not easy for everyone, obviously, but you know, you got to try and do what you can. Yeah,

Kelsey Harris:

yeah. Totally. Awesome. Um, Daniel, where can we follow you on social media?

Danielle Julius-Williams:

Instagram @fitbyflawless FITBYLAWLESS, and that's pretty much all I got Ya no, my Instagram I post retty much everything to do wi h the girls staying healt y. What we do on a daily basis That's pretty much it.

Kelsey Harris:

It's great. Everybody should definitely follow you. Cool. Well, thank you for coming on and chatting with me and like talking about uctv. And hopefully we spread a little bit of awareness today.

Danielle Julius-Williams:

Yeah, for sure. Thank you so much for having me. I had a blast.

Kelsey Harris:

I just want to thank Danielle again for coming n and having that aweso e conversation with me. I reall , really valued it. I ho e everyone listening to to let e know what you guys think of th s format, too. It's a little b t different because it was more f a conversation than n interview, which I really like . And yeah, I think that what t e biggest takeaway is like ju t taking care of your health n general. Regardless of wh t condition you have is o important. And everyone jus , you know, I would love to he r reviews and shout outs as wi h my guests. It's always great f you mentioned them into in a review or a shout out as wel . I'm also going to be giving aw y my new ebook if you do a revi w for this podcast. So you ju t have to screenshot your revi w once you do it and send me n email to Jane vers s [email protected] And then I wi l send you a copy of my eboo , which is six ways to impro e your health. So everyone kee s making the most of it. Thank y u so much for joining me today n the chronically living podcas . If you love this week's podcas , please subscribe, rate and lea e a review. Until next week, st y stron