Life With an Invisible Disease - With Denise Stracener

In this episode, I sit down and have a chat with my dear friend, Denise.  Have you ever wondered what it's like to live with an invisible disease? We get real about living with MS, a sneaky illness that doesn't always show its face. We dive into what it's like dealing with everyday stuff and big challenges, celebrating the little wins like being able to fold laundry, and facing down people's judgments. She also shares about leaving a job she was forced to leave due to her diagnosis and finding ways to cope and find joy in the new normal—think nature, simple pleasures, and those small but mighty self-care acts.

Denise also shares her story of a game-changing treatment in 2016 that put her MS on pause, reminding us why we've got to keep speaking up for ourselves. And, because we can't face it all without our tunes, we talk about the songs that keep us going strong—tracks like "Stronger" by Kelly Clarkson and "Barracuda" by Heart, which are more than just music; they're anthems of resilience. If you're looking for a community that gets it, or maybe a new fight song for your own struggles, this episode's got you. Join us for a chat that's as real as it gets, and maybe find a bit of strength along the way.

Support Denise for the 2024 MS Walk at this link:
https://events.nationalmssociety.org/index.cfm?fuseaction=donorDrive.participant&participantID=402939

Transcript

Speaker 1: 0:34

Do you have those people in your life that you reach out and say, hey, I really need your help with something, and they don't really care what it is that you need help with and they're like, yes, I'm in Well. Today you get to hear from my friend Denise. We've been friends for over 35 years. It was like middle school. In the episode I said 30 years, but it was literally I'm pretty sure I was like 12. In the episode I said 30 years, but it was literally I'm pretty sure I was like 12. So when we became friends, when we met and became friends and we drifted over the years for various life reasons and reconnected a few years ago and again, I don't know if you have people in your life like this, but when we reconnected it was like no time had passed and we sit and have beautiful conversations all the time and we just kind of get each other and it's amazing.

Speaker 1: 1:25

So today's episode we go into what life is like living with an invisible disease. Denise was diagnosed with MS on October 1st 2007. Ms on October 1st 2007. And to know her is to love her, because she is just a beautiful, beautiful person and she is so strong. And there were some things that we talked about in this episode that we had never actually talked about in a lot of detail about her disease and what it's like living with an invisible disease and what she faces every single day and it's very moving and gives a lot of perspective, because people really are going through things that you know, we have no idea. We have no idea when you're having a conversation with somebody, you have no idea what their past traumas are, if they have any medical issues going on like you just don't know. And it seems like people just sit in judgment so often. I was listening to something today and they were talking about creating a judgment journal and I was like, oh, that's amazing, Like how often if we sat back and actually like thought about how often we sit in judgment that was tracy lit, that's what I was listening to today. Um, a judgment journal. I think I might give that a try. I think it would be a good exercise because I think we don't necessarily want to believe or think that we judge people, but I think we probably do more than we realize.

Speaker 1: 3:02

Anyway, getting back to my beautiful friend Denise, I asked her if she would be willing to be on the show and this was actually my second episode that I recorded and she was like yeah, I'll do it, okay, no problem. And so we chatted and it isn't quite as long. I would like to go a little bit deeper with her about all of this and another conversation. So I will very likely have her back sometime soon and we'll chat a bit more. But this is just kind of a short little chat that we had and I wanted to share it with you. In the show description you will find information about how you can support Denise. The MS walk is coming up later this month and there's a link to help support her and fundraising efforts or the MS Walk. So if you are so inclined and would love to support, the link is in the show description.

Speaker 1: 4:05

Thank you so much for listening and enjoy today's episode. Welcome, denise. I'm so excited that you agreed to be a guest on the show today. How are you? I'm doing well. How are you? Fantastic? So would you take a few minutes and just kind of tell us a little bit about yourself?

Speaker 2: 4:25

Sure, my name is Denise Dresner, I am 49 years old and I currently live in Washington and I have gone through some stuff in my life. I was diagnosed with MS October 1st 2007. And there's been a lot of ups and downs and hills and valleys with all that, but oddly enough, I'm very thankful for my diagnosis because it has shown me a lot about life and changed my perspective on a lot of things.

Speaker 1: 4:57

But what makes you say that? What do you feel like it's changed?

Speaker 2: 5:00

I am thankful for things like being able to fold laundry, things that most people would not like to do. I like doing it because it means I can. I mean it made someone's accomplishment maybe you know running a 5k or I don't know, getting a big client, something like that but for me it's more basic stuff like, hey, I was able to do the laundry and the dishes today. That was amazing. Most of my MS stuff is invisible. I don't have a lot of outward facing issues, so that makes it more difficult, I think. But yeah, just getting back up when you've been knocked down is a big, a big thing. That I've learned through my diagnosis and other things in life.

Speaker 1: 5:48

How did that feel when you first were given that diagnosis?

Speaker 2: 5:53

It was a relief, yet devastating at the same time, because I had been having all of these symptoms and nobody could put them together. And once I finally got the diagnosis, I was like, okay, this sucks, but it gave me a way forward. I knew now okay, now, now, what's the next step? How, what do we do? How do we move forward from here to try to combat it as much as I could, to try to keep the life that I had? How?

Speaker 1: 6:22

long were you, I guess would you be open to sharing a little bit about, like, what your symptoms were and what prompted you to pursue, you know, trying to figure out what was going on.

Speaker 2: 6:34

Yeah, I. Well, the main thing that happened was that I woke up one morning and the whole right side of my body was not working. So of course I naturally went to oh my gosh, I've had a stroke or something horrible. There had said, well, do you have a neurologist? And I was suffering from migraines really bad back then and I said, yeah, I have this doctor. And she was like, okay, well, I'm going to refer you to her. They happen to be within the same system because you might have MS.

Speaker 2: 7:07

And I was like, whoa, and a good friend of mine had MS. And I was like, well, what does this mean? And of course I went home and started doctor Googling, which nobody should ever do. Um and uh, got my appointment with that doctor and she did an MRI and she was like, yeah, you have lesions on your brain, which are, you know, spots, basically scarring, and um, but we're going to wait till you have more before we do anything. And everything I had read had said early intervention is absolutely crucial to outcomes. So I kind of I knew I needed to do more, but I was in denial and I went to my sister-in-law's wedding and I danced while I was there and then the next day I like literally couldn't move. I was in so much pain.

Speaker 2: 7:58

So, I was like, all right, something's got to give. So that was when I went to Swedish in Seattle and they did a bunch of tests and they're like, yep, you have MS. So they and this was in October, like I said, october 1st and so we did every baseline test. You could imagine. We did tons of stuff, stuff, because they wanted to have a good picture of where I was when I started. And then I actually started treatment on Christmas Day of 2007. And I've been on six different disease-modifying drugs which there's no cure for MS disease modifying drugs which there's no cure for MS, but there are medications that can either stop progression. That's the. That's the goal is for it to keep you where you're at. A lot of them failed for me until I had a treatment in 2016 and 2017. And since then I've had no new lesions on my brain. So that's incredible. Yeah, it's stable, which is great, yeah.

Speaker 1: 9:04

So what would you say was the biggest mindset shift that you had to make after getting that diagnosis?

Speaker 2: 9:11

Well, I had to leave. I had to stop working in 2009 and I had worked at children's hospital for 16 years At that point. I started there when I was 18. Oh wait, yeah, 18.

Speaker 2: 9:23

And so, and leaving work is so ingrained in how we see ourselves and who we think we are and our self-worth. Even all these years later, I'm still partially in denial about my diagnosis. I long for the days of doing the things I used to be able to do, but accepting that new normal, which literally can be every day you wake up. It's a new normal. You know, things I could do yesterday I can't do today. Sometimes I'm better, sometimes I'm worse, sometimes it's the same. But the honestly, the biggest mind shift was when you and I met for a life coaching session about a month, six weeks ago, something like that and we were talking about how I missed who I was before and the things I was able to do, and I was angry that those things had been taken away from me and you had said something that totally kind of blew my mind. You're like, well, then, take them back, take your power back, and I was like, well, duh, it seems so simple, but it was so, honestly, life altering for me.

Speaker 1: 10:39

And that makes me so happy that it was so impactful for you, because I think sometimes that we, we don't realize that the areas in our life that we give away our power and to just say, just say, no, I'm not going to allow that to control me anymore, I'm not going to allow it to take, take that over.

Speaker 2: 10:55

So I'm so happy that that that was helpful yeah it was very helpful, and it's not just with my diagnosis, it's with loss. Um, my only biological son, passed away at nine days old in 1998. And I still think about him every single day, every day, and he has made me a better person, and it's so many things where we give away, like you said, our power, and it's just something like I said, something so simple was just life altering for me.

Speaker 1: 11:36

I mean, you've obviously had a lot of things come at you in your life and so how do you, how do you navigate through that? What's your well like, what's your go-to? You know, on the days that you're like, okay, well, wasn't like it was. Just you know today's, every day, is a new day and you don't know, you don't know how your body's going to react. You don't know what, what your mindset's going to be. How do you, how do you honor yourself?

Speaker 2: 12:01

The biggest thing for me is on the days that I can do things. I do do things. However, I then tend to overdo. On the days that I can do things and it's kind of a mantra that I've gone with since I was diagnosed is a day to play means a day to pay. So if I go out and do a bunch of stuff, or even, you know, if I do dishes and laundry and clean the floors and all that, the next day I'm physically I'm not going to be doing a whole lot because my body will be really sore, but it feels so good to have done those things it almost feels worth it.

Speaker 2: 12:39

Yeah, um, and you know, just trying to take each day and accept what I can and can't do on those days. Sometimes that's a lot more difficult than other times, but I just not moving forward and not pressing myself and not putting one foot in front of the other when things get bad is not an option for me, because I want to show up not only for myself, but for the people in my life, for our sons, for our grandchildren, for my husband, for my friends, and that's really important to me to be there for them as well and to be my best for them.

Speaker 1: 13:23

So what do you do to take care of yourself and like, do you do a lot of self-care, Do you?

Speaker 2: 13:29

I do I um positive affirmations was something that you and I talked about, and my husband actually got these big, bright, like almost thought bubble things, pieces of card, cardstock, yeah.

Speaker 1: 13:45

And he put them around the house.

Speaker 2: 13:46

I loved that, like there's one on my bathroom mirror. This is, she is amazing and it's a big arrow, and so I have these all over the house. I've got them here in my office. One of them is his note to self. I'm going to make you proud, so proud, today. You're getting better every day anyway.

Speaker 2: 14:04

And they are not just there. I actually look at them. And they are not just there. I actually look at them and say them out loud, which to me, is a big part of self-care. I go and sit out on the patio for at least 30 minutes a day, usually an hour. I walk our puppy and it's just those little things. So much of the time people think, oh, self-care means I need to go get a massage, I need to get a facial, I have to go get my nails done, know that kind of thing. And it's it's the little things each day that add up for you, showing up for yourself, that I think are so important. I mean, yes, sometimes I do. I go painting at the little local. You know, paint, paint and sip, kind of thing. Or I will go get my nails done or go to the farmer's market. That kind of stuff to me is still self-care, yeah, and I think it's all, it's all very important.

Speaker 1: 14:58

Do you feel like that's really shifted things for you?

Speaker 2: 15:02

It has, because it makes me realize that the little things really matter, whether that's, like I said, sitting out on the patio, I feel so much better instead of just staying in our apartment. And, you know, with the same air and the same surroundings it's like just getting outside always feels good, and on days that I'm not feeling well, I don't want to do anything. I want to sit on the couch and binge some stupid television show, especially right now. I recently had hand surgery so I can't. I do quilting and that kind of stuff. Well, I can't sew right now.

Speaker 2: 15:34

So, and there's other things that I can't do that I usually do, but I know it's short term because I'm going to recover and it's going to be fine. But especially now, those little things that I can do to change my daily surroundings, or you know, just sitting around doing nothing is huge, and that includes going out, going to the farmer's market, going with my husband to the grocery store, um, just to to take that step of what my knife sorry, what my life normally is is big for me, yeah.

Speaker 1: 16:10

Well, you consistently inspire me and we've been friends for over 30 years. We had kind of drifted apart for a while and then reconnected and I've been so grateful for that and just to really see your, your strength and the things that you you I don't want to say deal with, but like that come at you all the time, like there's. It seems like there's always something coming at you and you are just like I'm here for the battle, I'm going to do this and nothing is going to knock me down, and that's so motivating.

Speaker 2: 16:49

I have. My doctor calls me an auto immune factory because MS is an autoimmune disease, which means your, your immune system basically attacks itself. To describe what MS the the best thing that they. Um. When I was diagnosed they said it's basically like a piece of wire. And how wire has that the coating on the outside, like the plastic coating, and when you have MS, your body attacks and say that that is your nerve. With MS, your body attacks those nerves and they basically take bites out of that plastic. So when your thoughts or anything with your nervous system, like my brain telling my hand, okay, you need to move, now when it's going over that wire to send that signal, that divot stops the thought, stops the action. So then the action doesn't happen or it happens more slowly. So that's what basically and that's an easy way to describe MS.

Speaker 2: 17:53

But then because of that I also have celiac disease, I have psoriasis, I have and it's. They're all autoimmune things and then you just have your stuff in regular life that hits you all the time and it's like I got to push through it. I just have to not. Not pushing through is not an option. But thank you, and you inspire me as well with your positive attitude, cause sometimes I'm like I'm not always a ray of sunshine. Let me tell you, there are times that I want to get on my pity pot and stay there, but I don't. I get there, I vent, I do whatever I need to do and I get off.

Speaker 1: 18:30

But sometimes we just got to let it out right.

Speaker 2: 18:32

Yes, absolutely yeah.

Speaker 1: 18:35

Like, it's not always rainbows and sunshine. No, you got to feel those feelings and allow your like, give yourself permission to feel that and say okay, but then it's like we just don't want to. You know, stay there.

Speaker 2: 18:50

So like what can you do?

Speaker 1: 18:51

What can you do to feel better? What can you? You know whether it's going out on the porch or, you know, playing with your cute little pup. You know things that you can do to to just feel good. Yep, if somebody was facing a disease that that that got you know that diagnosis, what, what's your best advice that you could give to them?

Speaker 2: 19:16

try to stay positive in the bad times, and it's hard, Especially with something like MS, where a lot of it is invisible. People will say, oh, but you look so good. That's one piece of advice. Never say that to somebody with MS. But I guess you know, am I doing everything that I can today to push my life forward? To push me forward, to help me be healthier? Because this really is one day at a time, whether you have a medical issue or not, just life one day at a time. What am I doing? Everything I can today to make my future better tomorrow?

Speaker 1: 20:01

That's amazing advice. It really is, because we obviously, we all know that tomorrow is never promised and we know that you know, might as well make the most of the present moment that we're in, absolutely, absolutely. So can you tell me a little bit more about like what it's like to to have an invisible disease, like people like you said? They see you and they say, oh, you look great, you look fine, you know, like, really, do you feel like you have to go out of your way to like explain, or do you just say, whatever, it doesn't matter, they don't, they don't need to know, or how do you handle that? Depends on who it is.

Speaker 2: 20:45

Um, I mean, I can't tell you how many times, like, if I go to the mall, even if I'm having a good day, I will park in a handicapped spot, because I would rather save that energy for walking around the mall than saving the energy to walk from my car to the mall, and because it is invisible. There's so many times that people will come up to me and go why are you parked in the handicap spot? You're not handicapped. It's like you don't know my life. And I'll tell them well, I have multiple sclerosis. They're like oh well, you look fine. Well, gee, thanks, that makes it all better, that is so fantastic.

Speaker 2: 21:25

But those, those don't get to me. I just let it go. But when it's someone that's close to you, that's when it's so hard, it's like if I could give you MS for 20 minutes, so you get it, give you MS for 20 minutes, so you get it. But then I think I wouldn't want to, because I don't want someone to feel the pain inside, the nerve pain, the, the spasticity, the all the stuff that I feel all the time. I'm constantly in pain, but people can't see that.

Speaker 2: 21:57

Yeah, so when you put on a brave face all the time, I try but sometimes that gets old, you know, and and something that a lot of people say specifically about MS is that you don't get it till you get it, and I can't expect people to get it. But when it's someone that's really close to you and they're like, come on, why aren't you doing this? It's like I can't, I just I can't, and that's when it hurts, cause you're like okay, you've been in my life for a long time, you know, you've been around me with my diagnosis. You know about my diagnosis.

Speaker 2: 22:30

I'm very open about my MS diagnosis because I think that if I can help anyone out there by you know, oh look, she did this, or this is how she conquered this, or this is what she went through, then I am happy if I can just help one person. So my husband and I both have been super open about it. We actually call it our MS, because it's not just me. I have the physical symptoms, I have the, the, the brain issues, but he has it too, because he has to deal with it more than anybody else does. Yeah, but sorry, I totally got off what you're no, you're, you're good.

Speaker 2: 23:13

Yeah, it's really it. It, the invisible stuff is really hard. And you know, one of the things that they, the medical community, do is it's called neuropsych testing, where you go and they ask you, you know here's a handful of words, remember them, I'm gonna ask you about them later. And like five or six hours later they're like, hey, what are those words? After they they've done all this testing, I mean, literally it's a six hour test, um, and a lot of times for people that are having trouble getting a diagnosis, that's what they use to kind of make the diagnosis. However, you're in a room, you and this one other person, there's no noise, it's super quiet, it's comfortable, which is absolutely no part of what normal life is like, and so a lot of people don't get their diagnosis because they go to this and they're like, oh yeah, you're mildly, you know, cognitively affected by this or I can't remember the word, but they're really much more affected because they're not in a normal situation. So that's something, too, that a lot of people with MS struggle with is actually getting the diagnosis, because it's it's a diagnosis of elimination. So once they've eliminated all the other stuff and these pieces fit, then okay, it's MS. That's fascinating.

Speaker 2: 24:38

So just trying to work through that is really hard, and I think it's important for people that do have MS or any kind of of medical issue is to connect with others that have it as well, because they're really the ones that are going to get it. Like, hey, do you experience this? How do you? You know, how do you cause? Multi? Multitasking is like no longer a part of my life at all, but how do you handle these situations?

Speaker 2: 25:05

And everybody's MS is different. It's like a snowflake, because I may experience things that somebody else has never experienced, or they have one thing that's that is the biggest thing for them and you know this is my biggest thing is fatigue and, um, brain processing, like cognitive processing, right, um, but yeah, it's, uh, it's tough. When it's, it's much easier, like if my I have something called drop foot as well, but it usually only creeps up if I'm sick or something, because then you get something called a pseudo flare, which is basically a fake flare. It's not new damage, it's old damage that creeps up whenever you're sick or have a virus, and mine is my drop foot, so this is my foot, literally, when I pick it up off the ground, it just does this, so my toe would drag, but I have braces for it. So if I'm, you know, using my cane or using my walker, people don't question anything, right? But when I'm not, they're like but you look great, you're doing fine.

Speaker 1: 26:13

No, that's really such a good reminder that you know we, we have no idea what's going on with people, we have no idea what people are battling, we have no idea. You know, you can look at somebody and think everything is just perfectly fine, but then you know they've got things going on inside of them, whether it's, you know, a diet, a medical diagnosis, or things going on in their head or whatever in their life, and we have no idea. And especially not to just assume.

Speaker 2: 26:43

Yeah, not to throw out cliches, but you know you, you don't know what someone's going through. I can't even remember it now, so it doesn't matter. But basically exactly what you said you can't until you've walked in someone's shoes. You have no idea. And it's definitely not our place to judge each other. Granted, I think in this, our place to judge each other. Granted, I think in this world, people judge each other way too much. But it's not, that's not for us to do. We should be kind to each other rather than, you know, being competitive and judgmental. But wouldn't that be a great world? That would be a great world and we can do our part, right, that's, right, that's right.

Speaker 1: 27:21

Starts with you, yeah it all starts with us, and we can be the ones to impact the change in the world. I agree. Thank you so much for taking the time today Okay. So I want to end with one question Okay, what is your favorite book, movie or song?

Speaker 2: 27:46

Oh Lord, Well, my favorite. I have two favorite songs Okay Stronger, by I can't remember her name.

Speaker 1: 28:01

Kelly Clarkson. I believe there you go, thank you, one of my favorites too.

Speaker 2: 28:06

And then Barracuda by heart, just because I love heart and you can't not like that song but, yeah, stronger, Definitely when I'm not. You know, I'm definitely a music person. That's like my big self-care listening to music, but yeah.

Speaker 1: 28:22

I too am a huge music lover.

Speaker 2: 28:23

Yeah, I'd say those are my, my biggest.

Speaker 1: 28:27

Well, those are good ones. Those are good ones. Well, thank you so much. I really truly appreciate it, and I know that people will find this very valuable and helpful. I hope so. Yeah, thank you so much. Thank you, shannon, I appreciate it, thank you.