My MS Story

My MS Story

Episode 186 – Podcast Transcript

[(0:24)]Stephanie Buxhoeveden: Welcome to the Can Do MS Podcast. I’m your host, Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today we’re joined by Ashley Ratcliff Lundy, the Director of Communications at We Are Ill. She’s also an author, entrepreneur, and chronic illness advocate who’s using her platform to uplift and empower those living with MS and other chronic conditions. We are going to include links to Ashley’s book, her organization, We Are Ill, and her business, Poppy and Monarch in the description of this podcast. If you are newly diagnosed and you want to connect with other people who could share your experience, please check out our newly diagnosed meetups, which will also be in the description. Hey Ashley, thank you so much for being here with us today.

[(1:06)]Ashley Ratcliff Lundy: Thanks so much for having me. Really excited to chat with you.

[(1:09)]Stephanie: And I’m particularly excited because I feel like we’re different generations of MS patients, if you will, right? So I’ve been on my journey for over a decade. I was diagnosed about 12 years ago and I was already in health care, then went into MS research. Um, and it’s amazing when I was diagnosed we basically had injectables and that was it. Um, and so I didn’t really talk to my doctor about which treatment to start cause it was sort of like you have MS, here’s your shot. Um, and now that I treat MS and I research MS and, and things have progressed so rapidly, it’s almost like, I don’t even know what the experience of being newly diagnosed is. So I’d love to hear your perspective and your take because I think it’s gonna be a lot different than mine.

[(2:03)]Ashley: Yeah, yeah, you know, as we know, there’s been a ton of advancement as far as DMTs, uh, in the… For the treatment of MS. And so when I was diagnosed, um, I, I will say it’s interesting because even if someone was diagnosed now versus when I was diagnosed in 2018, like that experience is even different.

[(2:25)]Stephanie: Yeah.

[(2:26)]Ashley: So with me, um, I, my doctor didn’t necessarily give me all of the
options, so to speak, which is kind of a little bit unfortunate, but he did, um, you know, say, Hey, these are some options.

[(2:42)]Stephanie: So backing up to your diagnosis, right. And every story is different. Mine’s different than yours is different than everybody else’s, but can you walk us through your journey and how you arrived at your diagnosis?

[(2:55)]Ashley: Yeah. So, you know, I will say I’ve been pretty healthy all my life. I’d never been hospitalized, um, or anything like that. But I remember I had been at work and I was photographing our anniversary event, and so I was on my feet pretty much the whole day. Um, and towards the end of the night, I just felt really depleted and my foot was numb and tingling. I was like, Oh, I just overdid it. I’ve been working too hard. Surely, you know, the next morning it’ll be fine. And then it just like never got fine. And so like, you know, I would walk my dog and I had these like specific slides that, you know, sandals that I would put on just to walk my… You know, take my dog out for a quick potty break.

And I noticed that the sandal, like I couldn’t keep my foot in the sandal. And so they kept on flying off. And so I couldn’t really control it. And so it just got progressively worse, like within a matter of days, like I couldn’t lift my foot properly. And so it would slam down. Like you could hear me coming literally, like you would hear like my foot slamming down, come to find out that was foot drop or drop foot. And, um, so I go to see my primary care doctor. She refers me to a podiatrist, and then he… The podiatrist, um, does x rays, um, nothing’s broken, thankfully, but he’s of the opinion that I have a herniated, or sorry, um, a pinched nerve. And so he refers me to a chiropractor. So the chiropractor examines me, doesn’t MRI of my, um, of my legs, I believe.

And, um, doesn’t see anything or like it was of my lower spine actually because of where the… He thought that it was tied to that particular part of my body. So he doesn’t MRI of my, um, my lower spine, but it doesn’t show anything. And so he also pokes and prods me with the EMG test, which is where they stick the, like the, the needle in you and there’s like these electrodes and then it basically zaps you to, you know, gauge your nerves, your response to the stimulus, I guess. And it basically felt like I was being fried alive. And so those were inconclusive and they just… Everything seemed normal from those tests. So he was of the opinion that I had a herniated disc. And so I, you know, got the diagnosis of, of that, you know, the herniated disc. And so he recommended I do physical therapy. And after a few months, um, nothing was getting better.

So my physical therapist was like, Hey, you need to get a second opinion. So that’s what I did. Um, I had gone through my, you know, insurance to see who was in network. She said, anything neuro just book it. And I wanted to get a neurologist, but that one was gonna take longer. So I just booked with a neurosurgeon. And when I told my chiropractor, Hey, I’m, I got us appointment with the, um, neurosurgeon, he made me feel really little and dumb. And he told… He just said, you know, you know, why are you doing that? We already know, like the neurosurgeon is just gonna tell if you need surgery on your spine and we know that you don’t, so you’re wasting your time, but whatever. And that was the vibe that he was giving off. And so he made me feel really stupid. And so I canceled my appointment with the neurosurgeon and then like shortly realized like, Whoa, like I’m the one who can’t walk properly. I’m the one with this weird numbness and tingling. Um, I’m gonna call and get that appointment back. And so thankfully I was able to get the same appointment. And then within, you know, the next week I saw the neurosurgeon and, um, he could just tell by the way that I was walking, that it was not a herniated disc. You know, he did [crosstalk]…

[(6:47)]Stephanie: Nice.

[(6:48)]Ashley: …up and down. And he was like, I’m not seeing a herniated disc.
And then he… I brought my scans, like a good patient. And he was like, no, I’m not seeing a trial, a lateral triangulation here. Like what I’m like, this is what he told me. And so, uh, he was like, yeah, we’re gonna do more tests. And so in his office, he had an MRI machine. And so I did a MRI of… He did a MRI of my, um, upper spine and and neck. And so he… It showed, um, lesions. And so in the report he said it’s highly suspicious of a demyelinating disease.

[(7:23)]Stephanie: Hmm.

[(7:24)]Ashley: And I’m like. I don’t know what that is. Like, what is that? And he’s like, I don’t want to scare you, but it could be a mess.

[(7:29)]Stephanie: Yeah.

[(7:30)]Ashley: So we’re gonna need to do more tests. We… I’m gonna refer you to my chiropractor, um, or not my chiropractor. Thank God. No, my neurologist, um, he’s highly recommended. Um, and then they were able to get me in quicker. And so the neurologist ordered a MRI of my brain and that showed lesions. And then to confirm the diagnosis. He, uh, ordered a lumbar puncture, a spinal tap. And then the bands were there, and so that confirmed my diagnosis of multiple sclerosis. So that was on March 9th, 2018. Um, and so I’m glad that I stuck up for myself and didn’t let that chiropractor, you know, throw me off course even more, you know, that whole process took about six months, which I feel grateful for, but when other people hear that, they’re like, that’s way too long.

[(8:22)]Stephanie: Yes.

[(8:23)]Ashley: You know, you know, so I’ve… Ultimately, I was grateful to have the proper diagnosis. But sad that it took that long to get me there and that I was, you know, thrown about the medical… The healthcare system a little bit, you know, and yeah, it was really, um, sad when I got my diagnosis. It was in a way I did feel relief because I knew what was going on with my body, but, you know.

[(8:51)]Stephanie: Yeah, it’s so frustrating that you had to be such a advocate for yourself and your story. That makes me very frustrated on your behalf, but it’s not uncommon, right? I mean, you had foot drop, you had a very, like, clear instance of weakness, but MS sometimes is just tingles. Or just a little blurred vision at first. Um, so it’s not uncommon to have a misdiagnosis before arriving at the MS diagnosis or even delayed diagnosis. I know myself, I, I had a delayed diagnosis cause of me, right? I was like, Oh, I’m similar to you. I’m young, I’m fine. I had some blurred or double vision. It came and went and I was fine. It wasn’t until I had similar to you, weakness in my leg, in my hand. That I was like, Oh, okay, well, this is, this is probably something. Um, and then by the time I got to the provider, they were like, what’s wrong with you? Why didn’t you advocate for yourself? So it’s, uh, it’s a spectrum of experiences. Um, but no matter how you arrive there, obviously receiving an MS diagnosis is life changing. So what were your emotions in those first few days, weeks, months?

[(10:12)]Ashley: I was really scared. I, you know, didn’t… I knew something was up, but I didn’t expect it to be a chronic illness. You know, it’s like one thing, right? Like in my mind, I was going from like, Oh, this is treatable, right? Like, Oh, it’s, you don’t have to have surgery, but it’s fixable with physical therapy. But then going from that to like, Oh, it’s a temporary thing to knowing like, Hey, this is chronic. Like there’s not yet a cure for this and it’s gonna be progressive potentially, and there’s no cure for it. So it was just like, wow. Like to wrap your mind around that, it’s like, how do you process that? You know, like I was definitely devastated. I like, didn’t know what, like how quickly the progression would happen, like would I be, you know, able to walk myself down the aisle of when I got married? Would I… You know, like all these questions come up in your mind.

And I was very afraid, I was sad. You know, it was a whole grieving process for real about like, what I thought my life would be, and like, you know, coming to terms with what my life could look like. It’s all like very fuzzy and there’s no definite. You know, and that’s what was troubling about it. Even to this day, it’s like, you know, I’m fine right now, but like, what happens if my DMT stops working for me? You know, like, those are questions that I constantly grapple with. Um, so definitely it was hard and I had to process it like, you know, like, uh, the loss of some… Like a person a little bit. Like I had to grieve myself, my, my body and all, you know, my wellbeing. So it was very difficult. But I got through it. Um, thankfully, therapy helps, um, the support of my family and friends helped, you know, like them encouraging me and then finding organizations like we are ill. You know, who ultimately joined to work with as the director of communications and seeing myself represented, seeing other young black women who are still ambitious, who are still career oriented, who are still driven. And that gave me a lot of hope, you know. Let me know that my life wasn’t over so to speak. That there’s still a lot of life I could live in spite of MS.

[(12:28)]Stephanie: Oh yeah, definitely. I think you have to grieve. That’s part of the process of getting a diagnosis, as you said a chronic lifelong diagnosis. And eventually you do realize like, okay, this isn’t gonna end my life. It’s not gonna stop. It’s just gonna change things moving forward. And then of course, after diagnosis, you’re suddenly expected to become this amazing advocate for yourself and knowledgeable about MS and what lessons did you learn about navigating the healthcare system?

[(13:03)]Ashley: That you have to speak up if you want to… If you want to get the care that you deserve, you have to just speak up because unfortunately the squeaky wheel gets the grease, right? If you don’t raise, you know, your voice or make us think about things, it’s just gonna be status quo and I don’t need status quo. I need above and beyond. Like I need…

[(13:24)]Stephanie: Nice

[(13:25)]Ashley: …the best care for myself. And so it was learning that like I needed to come prepared to doctor’s visits. You know, asking questions of my doctor, um, making sure that I was a good patient, so to speak, writing things down. Like, so I could tell them, you know, this is what happened, and this is what, you know, the factors that were at play, you know, I was sleep deprived or it was very hot. You know, all those things. Um, and so yeah, I had to really, um, learn how to navigate the healthcare system by speaking up. You know, it’s hard when you haven’t… you don’t even… I’ve never had to do that before. Because I never saw the doctor except for like, you know, my OBGYN or, you know, like stuff or physical things like that. But if this was new territory. And so I quickly learned that I had to, you know, advocate for myself and speak up. Um, and it, it got easier, you know, the longer I live with MS, the easier it became. And so, yeah, I think you just have to do it. Like, just open your mouth and speak up about what you need, basically, is my takeaway.

[(14:32)]Stephanie: Yes. And being a healthcare provider, I didn’t wanna be the annoying patient, right? I didn’t wannna be that patient where everybody’s like, Oh, not them again. But sitting on the other side of the desk, I treated MS patients. I had over a thousand patients that I saw on an annual basis. It’s a lot of people.

[(14:51)]Ashley: A lot. Yeah

[(14:52)]Stephanie: And so things naturally pile up and it is that one percent of your patients who call you every single week about something or other, and maybe you do do a little eye roll when they call, but the people who call me and speak up and stay in close touch with my nurses and who call me when they were uncertain about something, they got better care. I’m not ashamed to admit it. Right? It’s the ones who came in for their yearly visit and said, oh yeah, I stopped my medicine nine months ago because it was making me feel sick. And never called me.

[(15:27)]Ashley: What?

[(15:28)]Stephanie: And I was like, no, you call me, you call me, please. Right? So the squeaky wheel absolutely gets the grease. You have to speak up. Your, your healthcare provider wants you to speak up. And I cannot emphasize that enough. Like it is not okay to not let us know that you’re not okay.

[(15:50)]Ashley: Okay.

[(15:51)]Stephanie: So please call them, even if they act annoyed, call them. The other thing I experienced too is I’ve been on six different therapies at one time or another, and I changed them for various reasons. You mentioned an allergic reaction, I had side effects. Um, were there any conversations you had about finding the right medicine for your lifestyle or one that would work well for you?

[(16:19)]Ashley: Um, I would say, unfortunately, no. Now I know that that should have occurred, but when I was, you know, getting diagnosed, it was like, so much to deal with, right? Like, you’re just told that you have this no cure. And then you’re hell do I do about it? And so my doctor, you know, he did give me choices but he never mentioned, you know, oh, are you person who can do injections like that wasn’t even asked.

[(16:46)]Stephanie: Wow. Yeah.

[(16:47)]Ashley: You know, and I know that that’s something that I should be asking. And so unfortunately he never, um, mentioned, um, the, uh, infusions. Um, and so that wasn’t even something that I knew about. Even though there were, you know, those sorts of DMTs on the market at the time that I was diagnosed. That was never presented as an option to me. And I don’t know if that was because my MS wasn’t severe or wouldn’t warrant that. I have no idea, but I just found out later when you, you watch TV and you see a commercial, you’re like, Oh, that would have been great to know back in 2015.

[(17:20)]Stephanie: Yes.

[(17:22)]Ashley: Cause then I could have, you know, picked a different DMT that works with my lifestyle. So basically I have to adapt my lifestyle to my DMT because it’s working for me and I’m grateful for that. It’s working. And so I want to be careful about just switching, you know, something that’s working for me when, you know, I don’t wanna introduce other problems. You know, so unfortunately that wasn’t the case with me, but now I know that shared decision making with your, you know, your doctor is key because you… You know, the best therapy is the therapy that you will use and stick to.

[(17:56)]Stephanie: Right.

[(17:57)]Ashley: So you need to, you know, be having the, having these conversations and being thoughtful about how it can work with your lifestyle. You know, like, I like to travel and now because I have an injectable medicine, I have to, you know, factor that in. Like I need to make sure that my medication is refrigerated or it doesn’t get too warm, and I got to make sure I, you know, can, you know, set it aside in my luggage and keep it on my person at all times. You know, like that sort of thing.

[(18:24)]Stephanie: Yeah

[(18:25)]Ashley: So it’s a lot to think about. Now it’s just like, you know, another thing on the to-do list, but it does… You know, it’s something that I have to be mindful of. And so I wish I had been given the option to maybe choose something different. But here we are.

[(18:39)]Stephanie: Yeah. Yeah. I, I like to get to know my patients. I like to know what they do for work. I like to know if they travel, if they spend a lot of time abroad. For instance, I had a, I had a military population. I practiced New DC. So I would have to figure out what DMT I could get somebody who’s deploying right? Over to Afghanistan or just so many things or college students who want to spend a semester abroad, or I had, um, high school and college students who spend summers doing internships out of state. So I really think lifestyle and the individual should play a bigger role in DMT selection, especially like you said, is it a pill? Is it a needle? Is it an infusion? Because the goal would ideally be to live your life as normal as possible. Right?

And I absolutely switched disease modifying therapies more for adherence issues cause people either were having side effects or they just didn’t like it. You know, they hate, they were sick of the needles, they were sick of taking a pill every day. Not everybody wants to take a pill every day, right? And that’s fine. So I switched more for personal preferences or for side effects or for comfort than I did for efficacy or breakthrough disease. Because most of these drugs that we have now are highly effective. And now it’s about what are you going to adhere to? What are you gonna take a hundred percent of the time? What is going to fit with your lifestyle? And I always say, your DMT should not make you feel worse than your MS does. And so if that is the case, it is absolutely time to speak up.

[(20:24)]Ashley: Yeah. Thankfully, I didn’t have any of those issues. Like it was, I guess once I got over the initial, you know, Oh, that’s a needle.

[(20:33)]Stephanie: Yeah.

[(20:34)]Ashley: You know, my body didn’t feel…

[(20:36)]Stephanie: Yeah.

[(20:37)]Ashley: …that, you know, so…

[(20:38)]Stephanie: Yeah.

[(20:39)]Ashley: …thankfully it was tolerable. And so…

[(20:40)]Stephanie: Yeah.

[(20:41)]Ashley: …I’m still on it.

[(20:41)]Stephanie: It is good. Give it a try, right? It might sound scary and then you try it and it’s not as scary…

[(20:46)]Ashley: Yeah.

[(20:47)]Stephanie: …as you thought it could be.

[(20:48)]Ashley: Yeah, you get used to it.

[(20:50)]Stephanie: We’re gonna pause here for a brief message from our generous sponsor and we will be right back to talk more with Ashley.

The following message is brought to you by Novartis. Since partnering with the Vardist, I have been thinking a lot about when I was first diagnosed with relapsing MS. To be honest, I was overwhelmed and in denial, and I didn’t wanna accept it. Eventually, I had to be real with myself, reflect on what was important, reframe how my diagnosis was impacting my life, and focus on how I was feeling. And I wish I’d started thinking about my needs sooner. It helped me get to a place of acceptance and find the right treatment choice for me. And I really hope others don’t wait as long as I did. That’s why I partnered with Novartis to create a three step guide hoping it can help people speak up and voice their needs. Get the guide at reframingms.com.

Welcome back. So how did your perspective on life shift after your diagnosis? And what changes did you make in how you approach your goals and your priorities?

[(22:02)]Ashley: So once I got, you know, a little bit along my MS journey and realized, you know, my life isn’t over like I, I’m actually feeling good. I could, um, continue chasing my dreams. And so, um, I… You know, I’ve been a writer my whole life and so at the time I was diagnosed, I was working in communications at Snapchat. Um, and so I also kind of became like the go to person, you know, the frame of reference, so to speak. From people who… Other people in their life would get diagnosed with MS, and so they would ask me like, oh, can you talk to my cousin or, you know, my neighbor, you know, was diagnosed. And I would always say yes, because I wish I had that when I was diagnosed. I didn’t really know anyone who was diagnosed with MS in my circle.

And so I, you know, would always give them advice, but I realized like I could help more people if I wrote a book about it. And so I wrote my self help memoir, it’s called Jesus Year, and it came out in 2020, um, and it covers my diagnosis journey and talks about, you know, the whole range of experiences being, you know, it being… Um, it affecting my family too, like it’s not just you who’s affected by it. It’s like something that affects the whole family. Um, and then, um, I also… You know, so I wrote the book and then I also recorded an audio book version of it. I narrate it. And, um, it became a bestseller on Amazon in, uh, 2021. And so I knew that like I needed to continue, you know, advocating and speaking up. And so I, um, took on a more leadership role with We Are Ill. It’s a patient advocacy organization that supports black women living with multiple sclerosis.

And so I joined the team at We Are Ill, and we’ve been doing such great work as far as, um, educating our community on advocacy and DMTs and shared decision making, the whole realm, the whole range of the MS experience. And then I, um, also started my own business. It’s called Poppy and Monarch. Um, and I make wearable flare, um, enamel pins, t-shirts, sweaters, hoodies, um, for the chronically chill and their cherished ones. So I really wanted to have something that spoke to the community of people who have, um, non apparent Illnesses. So, you know, looking at me because I don’t have a mobility aid, um, you wouldn’t know necessarily that I live with MS and that I struggle every day with it. And so I wanted something, uh, to speak to that community to make them feel seen heard and understood. And so that’s what Poppy and Monarch is. I launched the business in October 2023. And so we’re still going strong.

[(25:01)]Stephanie: I love that. It’s so inspiring to hear how you took MS and it was really a catalyst for all this positive change and action in your life. And I think that is incredibly inspiring and adverbial.

[(25:15)]Ashley: Thank you.

[(25:16)]Stephanie: I do want to go back to something important that you said, um, and that’s that MS doesn’t just affect the person that’s diagnosed, right?

[(25:24)]Ashley: Right.

[(25:25)]Stephanie: It’s also impacting families, partners, friends. So how did your loved ones react and what advice would you give to others who are navigating those relationships?

[(25:33)]Ashley: Yeah, so I’ve heard it said before in the Can Do community that MS is not a me disease, it’s a we disease. And so it definitely affected my family. Like I remember my brother he was abroad, um, so his now wife is from Poland and so he was in Poland with her when I got my diagnosis. I didn’t want to, you know, disrupt his fun and tell him like, Hey, it’s some heavy news. And so I waited until he got back to tell him. But before I could tell him, my dad told him. And so he was devastated. He calls me crying, thinking that like I’m on death’s door. I’m not, thank God. But it’s just… It was just like a grieving process because they love me. They want to make sure I’m going to be okay. And especially my father in particular, he was with me when I got my diagnosis. He was sitting with me in that that doctor’s office. And so it really hit him hard because he has, you know, dreams like for… Like I have for myself, he has dreams for me too. And he just was like, devastated at the thought that like my life would be interrupted in a way. And so it really hit him hard. Um, he, he definitely still is grieving it. He like, you know, like they call and check on me, like, how are you doing? Like, you know, how… No, for real, how’s, how’s your health do? I’m like, I’m good. I’m good. I promise you. I’m good.

[(26:50)]Stephanie: That’s what my parents do to me. Still, 12 years later, it doesn’t go away. And I understand. I think it’s harder for them.

[(26:57)]Ashley: Right.

[(26:58)]Stephanie: To live it. It’s me.

[(26:59)]Ashley: Love it. Yeah.[crosstalk]

[(27:00)]Stephanie: It’s just become part of my fabric. But I still think it’s, it’s more prominent on their minds than it is on mine sometimes.

[(27:08)]Ashley: Right. A little bit. Yeah. And I think because they don’t have the lived experience, they want to help, but they don’t know how.

[(27:15)]Stephanie: Mmh.

[(27:16)]Ashley: And there’s not like, they can’t make it go away, but they wanna be supportive, you know? So it’s… I, I totally understand why they are the way, you know, they…

[(27:24)]Stephanie: Yeah.

[(27:25)]Ashley: How they react. Um, but yeah, definitely it’s something that I wasn’t prepared for. I didn’t think it… I didn’t had no idea that it would affect them the way that it did. Cause I’m just dealing with it. I’m processing it too.
And so…

[(27:37)]Stephanie: Yeah.

[(27:38)]Ashley: …Um, so yeah, it’s something that definitely affects the whole family. But I think when you get into the flow of it and you like set boundaries, like, Hey, stop sending me articles that say like, you know, about this person who had a bad go of it, you know, within that. Or like, stop, you know, stop that. [laughter] Like, I will, it’s not helping me. I know that it could happen to me, but I don’t wanna dwell on that. So like, you know..

[(28:03)]Stephanie: Yeah.

[(28:04)]Ashley: …and then, you know, like asking them like to stop, like when I tell you I’m okay, believe me.

[(28:09)]Stephanie: Yeah.

[(28:10)]Ashley: You there, you know. So that sort of thing. So you have to like also set boundaries with your family members too, as you go along this journey. And they mean well…

[(28:18)]Stephanie: Of course.

[(28:19)]Ashley: …but for everyone’s sanity, you have to like, let them know like what, what you can tolerate or what, you know, what you can’t. So…

[(28:24)]Stephanie: Yes.

[(28:25)]Ashley: All in love though.

[(28:26)]Stephanie: Yes. All in love. And I think I’ve learned too the way that you project your story outwards is the way that you receive it back. So I think you and I have a very similar approach to our MS diagnosis…

[(28:38)]Ashley: Yeah.

[(28:39)]Stephanie: …and we tend to receive more positive, optimistic, uh, feedback in return. But it is up to you a little bit to set that tone, I think, and if that’s not the tone you want, and you do want a little pity, fine, great, that’s great, too, right? Um, but I think also letting them in and letting them see the vulnerability associated is important. And I remember there was one particular moment with my husband where I was having a lot of weakness in my legs and I was just determined that I was still gonna do everything for myself and he could not help me. And like, it was, it was a mountain that I wanted to die on. Right? And he got mad and my husband doesn’t get mad.
He’s not a mad, angry person at all. And he’s just expressed to me that I feel powerless to do anything. If you let me carry a box for you, that would make me feel better.

[(29:34)]Ashley: Yeah

[(29:35)]Stephanie: And I was like, Oh, I guess that makes sense. Cause when he’s sick, I wanna take care of him. I make him soup, I bring him tea. It makes me feel good that I’m helping improve his quality of life in a time of need. So that was sort of a eyeopening moment about boundaries and about, uh, setting the tone of conversation, but also the… That it is a gift at times to let your family and friends be there for you. Just like you would be there for them.

[(30:04)]Ashley: Yeah, absolutely. And I have to shout out my husband because he has like been he’s seen it all like we weren’t married at the time. But he’s been along the journey with me from like the the weakness and the numbness to like the actual diagnosis. He makes sure that I you know, take my DMT. He’ll take it out of the fridge for me. He’ll like stop me like, Hey, take this. It was like, remind me to take my vitamins and, you know, tough love. But it’s crucial because I need to stay on top of it. So yeah, having people who… It’s a blessing to have someone who is looking out for you and wants to help you along this journey. We all need a little help.

[(30:42)]Stephanie: Yeah, it is a wee disease.

[(30:44)]Ashley: Yes, for sure.

[(30:46)]Stephanie: So if you can go back in time to your brand newly diagnosed self, what advice would you give?

[(30:54)]Ashley: I would say chill out, it’s gonna be okay, um, do what you can when you can, like don’t, there’s no need to rush through it, process your story, your, your grief, know that it’s a journey. It’s, it’s something that will be with you for, you know, your lifetime, but still find time to do the things that you love. And still get joy out of life. You know, MS isn’t stopping any, any show unless you let it. So, you know, go on that trip, you know, book that flight, you know, have these fun experiences. See your friends, see your family, like make time for the things that you care about because you still can. And that’s, what’s gonna help you, um, feel well. You know, like it’s, it’s all like a spectrum of things that help you feel well. So, you know, do things that you love, find support in your community, you know, rely on your friends and family, look for groups that, you know, can support you, um, you know, support groups or just other patient advocacy groups, um, start to educate yourself when the time is, right? You know, don’t, don’t dive into it too quickly. But once you feel ready to like take that on, get to know more about MS. I have a, um, Google, uh, alert set up for multiple sclerosis. So I can just stay up to date on any, um, advancements. And of course, it’s a lot, so I tried to like, it can be overwhelming at times. But I do set a time side, set time aside to like go through that and just. Stay up to date on, you know, what’s happening with MS. But, uh, you got it, take your time and just let people help you.

[(32:38)]Stephanie: Yeah. It’s a marathon. Not a sprint.

[(32:40)]Ashley: It’s a marathon. Not a sprint. Yes.

[(32:42)]Stephanie: Yes. I love that. And I love that you embody that not only can you live a full life, but maybe arguably a more meaningful one with MS.

[(32:53)]Ashley: Yeah. Absolutely. I, I like to say that MS gave me purpose in a sense because it… If I wasn’t sick, then I wouldn’t know that other people needed the encouragement, right? Like…

[(33:04)]Stephanie: Yeah.

[(33:05)]Ashley: …it opened up a whole world for me. And so, it caused me to be intentional with my time, too. You know, like, now that I know that I have this illness, I wanna… While I’m healthy, like, I wanna do the things that I wanna do. I wanna achieve the things that I wanna achieve, so.

[(33:20)]Stephanie: Yes. Yeah, that’s what I keep saying. I said, I’m not gonna wait until retirement to take that trip.

[(33:24)]Ashley: Right.

[(33:25)]Stephanie: It’s I’m gonna go now while I’m young, relatively young, and [laughter] still looking pretty good and prioritize experiences and friends and family and life over work, which I might…

[(33:38)]Ashley: Yes.

[(33:39)]Stephanie: …do more if I didn’t have this.

[(33:42)]Ashley: Yeah. Work is not the end all be all.

[(33:44)]Stephanie: Yeah. Thank you so much for your time and your wisdom. I could chat with you all day, but we really appreciate you being here and sharing your story with us today.

[(33:54)]Ashley: Thanks so much, Stephanie. It was a joy speaking with you and I really appreciate the time.

[(33:58)]Stephanie: I am.

[(33:59)]Ashley: Bye.

[(34:01)]Stephanie: Thank you for listening to this episode of the Can Do MS podcast. Which was created in collaboration with Novartis. If you liked this episode, please leave us a rating and review on Apple podcasts or Spotify. We appreciate your feedback. Until next time, be well and have a great day.

[END]

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