Episode 56: Living With Visible Illness

Guest: Lashana Taylor

Lauren: Well thank you for doing this with me. Absolutely. My pleasure. It's really cool to be here with you and do it. Cause we could have done this over video but we're like, Oh, let's wait until we both cross paths in person. Absolutely. It worked out perfectly. Yeah.

Lashana: And thanks for having me in your home of course. And it's nice to be here.

Lauren: And I remember you and I were just reflecting on your post about a year ago in the podcast cafe. Do you feel like reading that right now? Don't let, and I can hold this for you, be happy. This isn't a test to see if you could stretch with this microphone. No problem. Because what I remember is, and tell me if this is right, you had written something before you even had diagnosis.

Lashana: Yeah. And said hello to everybody in the group.

Lauren: Absolutely.

Lashana: Yeah. I came across the podcast, um, I ended up being diagnosed November the 28th of 2018 and I had came across your podcast about September, October of that year. It was amazing and I just felt so close to everyone, you know? And then you having the online community, it was just amazing and it, it allowed me to kind of open up and be vulnerable, um, where I hadn't in my personal life yet. And so that was a great outlet for me. And you, I, I cannot recall exactly what the question was that you had asked me. It was something in the lines of “What have you taught yourself or what's new in this journey? And my answer was loving the whole me through all of this ugliness loving me through the falls, through the tiredness, through the restrictions and the limitations.”

Lauren: Hmm.

Lashana: And I came across that today and it just warmed my heart because it's still something that I have to apply every day. Uh, being that this is a fairly new journey for me, I was so excited to be with you today that I did share on my personal Facebook and um, my coworkers, my friends, my family was happy. We're happy to chime in and, and I'll share, I'll share with you what it is that I wrote on my facebook.

Lauren: Now we all get to hear it. I love that.

Lashana: I said, today is a milestone in my journey with ms today, I have the amazing opportunity to be a guest on this is not what I ordered. Podcast sharing my experience, my knowledge and expertise with a man or a woman just like myself, hoping to give them some security and some hope. This podcast in her guest pulled me through the darkest of days I hope to provide to just one single person. My mission will be accomplished. Yesterday, 11/28/19 marks my one year since diagnosis. What a way to acknowledge my first year breaking through barriers and living my new life.

Lauren: [inaudible] I love this cause today is November 29 2019 and it's been a full year.

Lashana: It has.

Lauren: And I know your health journey begins much earlier than them, but given that, what would you want folks who are listening to know about what your journey has been?

Lashana: I just want them to know that in the worst of it, it's very hard to see that things will indeed get better and you have to just remain hopeful that it is going to happen. And never happens as soon as you want it to come true. It never does. But it will happen. Rest assured it will happen.

Lauren: Yes, I love that. And that can only be said by someone who has truly been through it, you know?

Lashana: Absolutely.

Lauren: I mean it can be said by anyone, but it lands when it comes from someone who's been through it. So what's like a summary of what your journey has been?

Lashana: Well, it started about seven years ago.

Lashana: It's been quite a long journey and it started with something as simple as sciatica, you know, and of course I went the the, the natural route of I'm going to go to the chiropractor, you know, and get adjusted. That can't help. But you know, that can't hurt anything. And I did. And about six to eight weeks later, the sciatica disappeared. I was like, Oh, this is great. At that same very moment, I realize, wow, my balance is really off. It became hard to get up in the, down the stairs. I had to start using railings. Never had to do that before. And it started just kind of resonating like, wow, your balance is really off for SIADH. It has gone. Your balance is off. Then it was like turn into a horrific backache and my back killed me forever for like a whole like year and a half and then of course, because it's my back, right?

Lashana: I'm like, maybe I should go see like an orthopedic specialist, you know, and see what's going on. I had a primary care lady, your primary care doctor who was not in very much involved, she really did not. I navigated this entire process by myself, which makes me wonder if it would have happened much sooner if I would have been in the right hands here nor there. I go and I see an orthopedic specialist and they're like, yeah, you know what you have going on is not really, it's not really relative to what you're dealing with. I'm going to send you to a rheumatologist, go to the rheumatologists, have some x-rays of my SSI joint, all the things, everything comes back clear. So now at this point I'm like, okay, physical therapy, I'm in physical therapy. I'm like, all right, you know, making some progress.

Lashana: Now I start getting neuropathy now I started having the tingliness in the feet and still have the backaches still have the loss of balance. Start realizing I'm having frequent urination frequency and I'm like, what is going on here?

Lauren: Lots of things adding up.

Lashana: Yes. And then that's like five years of symptoms that just continuously. Then I, my walking started, I couldn't run anymore and I started looking funny when I'm walking. I'm like, what is going on here? And finally get in the hands of a UDaB medicine here in Seattle and they're are one of the top doctors in schools. And I was like, okay. So I get in there about, I'd say it was about August of 2018 and she again looks at the X rays of the back and everything and she's like very much what you have going on is neurological. So she sends me for an MRI scan on my brain.

Lashana: Now we're really lost because it comes back clear, healthy brain. Okay. But I'm still gonna put you today then forward me to a very qualified neurologist. At Swedish medical center here in Seattle. And at that point in time I was desperate. I was in such pain and agony and decline and no answers. And it was I, I literally went to her and I said, I need you to take the most aggressive approach. I am willing to put up with anything necessary to find out what is going on. Well,little did I know that that was gonna result, result in the spinal tap, everybody loves those. This lady, I saw her October 31st, 2018 I had a diagnosis November 28th. And unfortunately it was a diagnosis of primary progressive multiple sclerosis. And as heartbreaking as it was, it was almost a relief to know what was going wrong. I'm not losing my mind. Um, these people are telling me nothing's wrong. There's something very wrong. And the grace of God, I was able to get answers. And at that point that started my journey. Even though the decline had been for so long. And anybody who has had a chronic illness that kind of, you have the whole journey prior to even being diagnosed. It's, it's, it's um, it's draining.

Lauren: Yeah.

Lashana: It's extremely draining and ah,

Lauren: It can be lonely. It can be confusing. Like you said, is there something not wrong with me but it feels like there is and to finally get that validation.

Lashana: Absolutely. So that was, that was then at that point in time it was relief as, as scary as it was and the fear of the unknown and all of those things, it was very much relief at the same time because now I know what is going on. I know I'm not going to have a shortened the lifespan because of it. I, there could have been so many other things that would be worse. You know, that uh, it, it brought a sense of relief.

Lauren: Yeah. And primary progressive MS how would you describe what that means?

Lashana: The difference between a relapse remitting form and primary progressive is that relapse you have symptoms that come in and out. Um, and primary progressive is where you just have a constant decline and that is very much my story. It was, it's constant symptoms and then constant, um, restriction with my mobility. Secondary to that, that the neurologist also told me that people who have spinal lesions, um, cervical spinal lesions and don't have lesions on their brain, that kind of summarizes as primary progressive as well. Me being half African-American also makes my disease course. Um, naturally a more aggressive disease course, um, based on ethnicity.

Lauren: I didn't know that.

Lashana: Yeah. Yeah. It was very interesting for me to learn that from my neurologists.

Lauren : So your neurologist told you that there's some element there related to ethnicity?

Lashana: Yep.

Lauren: I never knew that.

Lashana: Yes.

Lauren: I know that there have been some correlations with other diseases. I just don't know that MS was one of them.

Lashana: Yeah.

Lauren: Yeah,

Lashana: I was, I was very intrigued to figure that, find that out.

Lauren: So it was this mix. You felt the relief, but then also you had this completely new information. It was….

Lashana: No information. Absolutely. And it was one of those things where I didn't have anybody in my life or close to me that has experienced multiple sclerosis. And as you know, it's, everybody's journey is so different. You're never going to find two people that have the same exact symptoms. And I feel like learning about ms is kind of like parenting in the sense that there is no blueprint.

Lauren: That's a great way of putting it.

Lashana: There's no blueprint. You literally figure it out. They, after day, week after week, year after year, and being that it's only one year here, I still got a lot to learn, but I've learned so much just in that short timeframe. Yeah.

Lauren: It's like there's, it's a multifaceted feeling that I have about the fact that there's no blueprint because in some ways it's really frustrating that there's no blueprint, there's no one perfect approach. And there's also not anyone who's, who has a crystal ball who can tell us what's coming next.

Lashana: Exactly.

Lauren: But then at the same time, what I do love about there not being a blueprint is that means that we need to be in the moment. We need to be paying attention and we need to be creative if we want to do this well, and we kind of have to improvise with what life brings us.

Lashana: Absolutely. And adapt accordingly.

Lauren: Yeah. So, and for you, I know you've had to do that and I'm curious how that theme has shown up for you of, of adapting as you go.

Lashana: The adaptation did not come into effect until I embraced and accepted where I was at right now. A lot of this past year was spent not embracing this journey really. I guess I kind of had the feeling that if I accepted this that it would never go away. Well, the reality is is it never will go away. But I couldn't learn to adapt until I accepted that,

Lauren: Ooh, that is just,

Lauren: it's complicated. It really is complicated.

Lashana: And the moment that I accepted it is when I was able to break barriers.

Lauren: So it's like you had a fear that if you did accept it, that would mean it wouldn't go away. But then you realize, well, it's not going away either way. So what would happen if I started to bring acceptance to my ms after all this time spent, not wanting to accept it, and then what you found was, okay, now I have more freedom and openness and more options for adaptation.

Lashana: Absolutely.

Lauren: Wow. I'm just taking a deep breath because that's the kind of information I always need to hear, you know, like, right. So much that isn't in our control, that asks of us, okay, can you see me for what I am and now what will we do together? Kind of like, it's almost like partnering with the ms.

Lashana: yeah, no, it was, and it was really hard to partner, especially because a lot of people say, you know, ms is invisible. Mine is not. Mine is not invisible. I use an assistive device. And that at first broke me a legit did and I had the hardest time understanding why was I so insecure, why I didn't ask for this. I was just kind of dosed in in life. You know, it, it took me a long time to really be okay with that. And I felt like once I embraced it that it would never go away. That I'd always use an assisted device. And that's not true. That's absolutely not true. There are people who have been partially paralyzed, diagnosed, treated and rehabilitated. You know, I, I didn't understand. I think one of the biggest breakthroughs in this journey is mine is not invisible. It is very physical. And why? Why was I so insecure? Why did I care so much about what pot people thought? Why? And through a lot of self work, I realized it was because a high had never had been forced to do the work inside to identify my beauty on the inside. Everything was strictly external. How beautiful you are, how gorgeous you are. Oh, your hair is beautiful, you're so cute. You know all of those things. And the second that I am using an assisting device, I no longer felt any of those things.

Lauren: That part was taken away in your, your way of seeing it was, I don't have that anymore.

Lashana: Yeah. So I had to turn inside and do the work.

Lauren: What have you discovered?

Lashana: I've discovered that the reason that I was so insecure for so long was because I used to be a critical person that's ugly, that's extremely ugly. So once I identified I was able to fix it and the second that I fixed it and forgave myself for all my main critical comments and thoughts over the years, I began to be okay and not be insecure.

Lashana: Mm. It was ugly.

Lauren: I think when that allowance is made to give kindness to that part of ourselves. And in this case you're talking about Chris being critical, anything of the external world also turns inward. Right? So in a way you became released from your own

Lauren: criticism [inaudible]

Lashana: I knew there were people that who like how I used to be. There's people out there like that and that was what made me insecure.

Lauren: Yeah. Well that makes a lot of sense. And I also want to ask you the part about the external versus the internal and kind of judging based on looks. Have you been able to find a new way to see yourself through this journey with the visual mobility

Lauren: challenges?

Lashana: And thanks for having me in your home of course. And it's nice to be here.

Lashana: Yeah. And said hello to everybody in the group.

Lauren: Absolutely.

Lauren: Hmm.

Lauren: Now we all get to hear it. I love that.

Lauren: [inaudible] I love this cause today is November 29 2019 and it's been a full year.

Lashana: It has.

Lauren: And I know your health journey begins much earlier than them, but given that, what would you want folks who are listening to know about what your journey has been?

Lauren: Yes, I love that. And that can only be said by someone who has truly been through it, you know?

Lashana: Absolutely.

Lauren: I mean it can be said by anyone, but it lands when it comes from someone who's been through it. So what's like a summary of what your journey has been?

Lashana: Well, it started about seven years ago.

Lashana: I'm like, maybe I should go see like an orthopedic specialist, you know, and see what's going on. My end do. I had a primary care lady, your primary care doctor who was not in very much involved, she really did not. I navigated this entire process by myself, which makes me wonder if it would have happened much sooner if I would have been in the right hands here nor there. I go and I see an orthopedic specialist and they're like, yeah, you know what you have going on is not really, it's not really relative to what you're dealing with. I'm going to send you to a rheumatologist, go to the rheumatologists, have some x-rays of my SSI joint, all the things, everything comes back clear. So now at this point I'm like, okay, physical therapy, I'm in physical therapy. I'm like, all right, you know, making some progress.

Lauren: Lots of things adding up.

Lashana: Now we're really lost because it comes back clear, healthy brain. Okay. But I'm still gonna put you today then forward me to a very qualified neurologist. At Swedish medical center here in Seattle. And at that point in time I was desperate. I was in such pain and agony and decline and no answers. And it was I, I literally went to her and I said, I need you to take the most aggressive approach. I am willing to put up with anything necessary to find out what is going on. While the little did I know that that was gonna result, result in the spinal tap, everybody loves those. This lady, I saw her October 31st, 2018 I had a diagnosis November 28th wow. And unfortunately it was a diagnosis of primary progressive multiple sclerosis. And as heartbreaking as it was, it was almost a relief to know what was going wrong. I'm not losing my mind. Um, these people are telling me nothing's wrong. There's something very wrong. And the grace of God, I was able to get answers. And at that point that started my journey. Even though the decline had been for so long. And anybody who has had a chronic illness that kind of, you have the whole journey prior to even being diagnosed. It's, it's, it's um, it's draining.

Lauren: Yeah.

Lashana: It's extremely draining and ah,

Lashana: it can be lonely. It can be confusing. Like you said, is there something not wrong with me but it feels like there is and to finally get that validation.

Lashana: Absolutely. So that was, that was then at that point in time it was relief as, as scary as it was and the fear of the unknown and all of those things, it was very much relief at the same time because now I know what is going on. I know I'm not going to have a shortened the lifespan because of it. I, there could have been so many other things I would be worse. You know, that uh, it, it brought a sense of relief.

Lauren: Yeah. And primary progressive. Ms, how would you describe what that means?

Lauren: I didn't know that.

Lashana: Yeah. Yeah. It was very interesting for me to learn that from my neurologists.

Lauren : So your neurologist told you that there's some element there related to ethnicity? Yep. I never knew that. Yes. I know that there have been some correlations with other diseases. I just don't know that a mass was one of them.

Lashana: Yeah.

Lauren: Yeah,

Lashana: I was, I was very intrigued to figure that, find that out.

Lauren: So it was this mix. You felt the relief, but then also you had this completely new information. It was [inaudible]

Lashana: no information. Absolutely. And it was one of those things where I didn't have anybody in my life or close to me that has experienced multiple sclerosis. And as you know, it's, everybody's journey is so different. You're never going to find two people that have the same exact symptoms. And I feel like learning about ms is kind of like parenting in the sense that there is no blueprint.

Lauren: That's a great way of putting it.

Lashana: Exactly.

Lashana: Absolutely. And adapt accordingly.

Lauren: Yeah. So, and for you, I know you've had to do that and I'm curious how that theme has shown up for you of, of adapting as you go.

Lauren: Ooh, that is just,

Lauren: it's complicated. It really is complicated.

Lashana: And the moment that I accepted it is when I was able to break barriers.

Lashana: Absolutely.

Lashana: yeah, no, it was, and it was really hard to partner, especially because a lot of people say, you know, MS is invisible. Mine is not. Mine is not invisible. I use an assistive device. And that at first broke me. It legit did and I had the hardest time understanding why was I so insecure, why... I didn't ask for this. I was just kind of dosed it in life. You know, it, it took me a long time to really be okay with that. And I felt like once I embraced it that it would never go away, that I'd always use an assisted device. And that's not true. That's absolutely not true. There are people who have been partially paralyzed, diagnosed, treated and rehabilitated. You know, I, I didn't understand. I think one of the biggest breakthroughs in this journey is mine is not invisible. It is very physical. And why? Why was I so insecure? Why did I care so much about what pot people thought? Why? And through a lot of self work, I realized it was because a high had never had been forced to do the work inside to identify my beauty on the inside. Everything was strictly external. How beautiful you are, how gorgeous you are. Oh, your hair is beautiful, you're so cute. You know all of those things. And the second that I am using an assisting device, I no longer felt any of those things.

Lauren: That part was taken away and in your, your way of seeing it was, I don't have that anymore.

Lashana: Yeah. So I had to turn inside and do the work.

Lauren: What have you discovered?

Lashana: I've discovered that the reason that I was so insecure for so long was because I used to be a critical person. That's ugly, that's extremely ugly. So once I identified I was able to fix it and the second that I fixed it and forgave myself for all my main critical comments and thoughts over the years, I began to be okay and not be insecure. It was ugly.

Lashana: I knew there were people that who... like how I used to be. There's people out there like that and that was what made me insecure.

Lashana: I kind of really spoil myself with a lot of cute clothes like that I really do. And then they asked me to fill a lot better. It really does. Awesome. Yeah, I mean, I feel like it's a simple fix. You know my significant other, why you always got packages coming, you got another packet and I'm like, yeah, I needed that card again. I needed the high rides. Dean's, what are you talking about? They got the frayed him, what are you saying? You know? So I just put a lot of additional into my external and that that made me feel better. And I think that once I became comfortable with it, people were no longer uncomfortable with it, meaning my peers at work and things like that. I think people really thrive off of your own acceptance. Their response is going to kind of be in line with yours. You know what I mean? It's all about how you present it and it took some serious work.

Lauren: Yeah. And I feel like it's what I would call the emotional heavy lifting of going through something that you didn't plan or ask for and all of a sudden you get this whole curriculum you're dealing with, okay. Physical appearance and being critical in the world and being critical towards myself, and I'll readjusting to this new way of being in the world. And I love that you incorporated cute clothes into it because there is a way that we can tend to our physical appearance out of fear. But what I'm hearing from you is you're doing it with love. Like there's a joy, there's a playfulness to it. Like, Ooh, cute little outfit. Yeah. I'm going to get that card again. Sounds like it's not because you're afraid of what would happen if you didn't, but because you're being drawn towards it.

Lashana: Yeah. So that kind of started, you know, putting bandaids on the open wounds. You know what I mean?

Lauren: That's so cool. Now I would love to talk a little bit about your, um, I don't even know what you'd call it. It's like a protocol you've been following to support your journey.

Lashana: Yeah. Yeah. I um, was enough to come across a book that literally changed my life and it's called Overcoming Multiple Sclerosis and it's written by Dr. George Jelinek and he has a program that's called Overcoming MS: OMS program. It is heavily based around the way that you eat. So it's a plant based diet plus seafood simply for the purpose of the Omega threes being that ms is an inflammatory disease. And then there's some other pieces that are important that they incorporate in there. And as meditation, you know, the mindfulness part of it, vitamin D supplementation and also uh, flaxseed oil, um, on a daily basis. Again, a great, um, you know, high in Omega threes in an anti-inflammatory. And it was exciting because I literally implemented that probably about three weeks prior to my diagnosis because I was in just such a desperate place and everything was so out of control that it was the one thing that I could control. And it, it made me feel good. Like you're taking control of this, you're doing what you can do. MS is so unknown and so you can never anticipate what a day is going to be, you know? And so for me to be able to do that, I think it also helped kinda patch those open wounds. You know it's like okay you're taking control here, you're doing something that's great for your body, you're going to allow yourself to thrive. And it was what I needed.

Lauren: That's so cool that you found something that could give you, cause you were mentioning there's no blueprint but then in some ways this is also a helpful laying out the steps for some really important parts of supporting your health.

Lashana: Absolutely.

Lauren: And actually in a lot of things that you've just described are similar to what my doctor tells me, you know like eat nutrient and eat nutrient rich foods, plant based diet is very nutrient rich omegas and vitamin D having a disease-modifying therapy is part of that is journey as well. So it makes a lot of sense. Meditation is a good thing, although I don't think my doctor tells me that but I hear it elsewhere. So this is sort of like your end, by the way, I want to mention, I haven't worked with this protocol before so I don't have any personal experience with it. But just hearing it, it makes a lot of sense. And you've been doing it for how long?

Lashana: It's been a year and three weeks. Yeah. It was my first Thanksgiving applying the no dairy, no animal protein, all that good stuff.

Lauren: Wow.

Lashana: Yeah.

Lauren: So it was a great experience and instead of big impact for you.

Lashana: It has. It definitely has. I mean even if you take away chronic illness, you take away ms, you're still doing your body good. It just happened to be my reason to make that change. But anybody could make that change and they're going to thrive.

Lauren: Yeah. I'm glad you found it. And I also wanted to talk about the medication aspect of things cause you and I connected, I think it was right before your first infusion and we chatted a little bit and you and I have similar medications. We're not on the exact same medication, but similar enough. We both go to the hospital for an infusion. I hadn't really heard too much like you and I checked in a little bit, but I'm curious, how did it go with your first infusion?

Lashana: Again, it's one of those fear of the unknowns. So I mean overall it went great. The DMT that I'm currently on is Ocrevus. It is the only FDA approved medication for someone with primary progressive, um, while at the bulls sclerosis. So it was pretty easy to say yes, I didn't have a choice to make. Yeah. Other than yes or no. That was the only choice I had. The first two half doses, they were, they were fine. I mean, I had mild reactions, nothing that was intense, nothing that couldn't be handled. And then we fast forward six months in September, I had my first full dose infusion and everything went fine. I did feel different. I did, I did encounter some again, no blueprint. You'd, nobody can tell you what you're going to experience, you know? And again, it was scary because I didn't have anybody to tell me, Oh, that that's normal. Those symptoms though, they'll go back away. You know, don't worry about it. You know, it takes a little time for your body to adjust and all of those kinds of things. Um, overall it's been great. I now know what to expect. I'll have a higher tolerance for it because I say this is just the process, you know, it's going to get better. It's just the process.

Lauren: Absolutely. Well it was neat to talk to you about it because sometimes I chat with people because through friends or whoever connects me to someone who's going to go take a similar medication that I've taken. It's kind of neat talking about it together. Like when we chatted on the phone, I was kind of excited to be able to offer something, which is funny to me. Cause when I go back in time to when I got my first infusion, I was like, not in any way thinking about how I would be helpful to anybody else. I was just like, Oh, I'm going to get this infusion. I'm scared. I remember the first time I got my full dose, I was like not thrilled about it. Not thrilled. So for me it was kind of like full circle to be able to talk to you and feel like, okay, I get to support you and also help you to feel less alone. But also kind of look back at my first time too and how very vulnerable it is to go in and welcome a new medication into your body. So it was kind of special to do that. So thanks for letting me be a part of that with you.

Lashana: Absolutely.

Lauren: You had two infusions, right?

Lashana: So yeah, the first first dose is considered a half dose. You get two half doses 14 days apart, right. And then you go six months and then you get your full dose infusion. So it's initially when you started to um, servings if you will of 300 milligrams each and then w you fast forward six months later and you're doing the full 600 milligrams.

Lauren: Okay. Got it. So it sounds like this is for you, tolerable, manageable.

Lashana: It is. It's twice a year. Um, you're not having to take something every day or twice a day or inject yourself. Um, so I'll take that as a win, I'm going to run with that one.

Lauren: Yeah. Well, and I'm also curious like who goes with you when you get your infusion?

Lashana: My mom goes with me. Yeah. She has her own eCommerce business and so she's able to work remotely. She brings her laptop, you know, it's a, a lovely, um, a lovely place that we go to. It's beautiful. And so it has a Starbucks. She's happy, she goes to lunch, you know, and she, she just keeps me company, you know, it's really nice to have support and you know, when you're going through something like that that you're not quite a veteran at, you're not kind of seasoned in this yet. It's all kind of new. And so she sticks by my side through it all.

Lauren: That's so cool. And you're, you've got some strong supports in your life and that was one of the things we chatted about on the phone too. I wonder if you could tell me a little bit about your, the relationships in your life.

Lashana: I'm very lucky. It's more often than not that I hear people that go through their health journey alone or they don't have people who understand. I hear a lot about how they, my family, they just don't understand. I have an extremely supportive mother and you know, her husband, my stepfather, you know, I commend him too because that had to be extremely hard for my mom to watch her daughter be in a constant decline and hurting and all of those things. So I commend him for being a support to her. You know, my grandmother, the both of them, they're just constantly, you know, on my side and just have, you know, consistent support and calling me every other day to check in on me and I have my best friends. You know, the one thing about, I think going through this journey with ms is it legit filtered out the people who are not meant for my life. And I, I really take that as a blessing because I think many people have people in their lives that are weights and not necessarily an equal friendship. And sometimes it takes traumatic events to really realize who's in your corner. And it filtered out those that weren't for my life. And it allows my energy to be spent where it matters most.

Lauren: That's so bittersweet.

Lashana: It is.

Lauren: It can be really painful seeing where the relationships aren't working out, but then at the same time bolsters in so many ways. The relationships you do have to see, wow, we're getting through hard together and the strengthening of that relationship.

Lashana: I'm, I'm super blessed between my, my best friends and my mom and my stepfather and my grandparents and my uncles. I mean, it's just, they're amazing. And I honestly could not have gotten through this without them.

Lauren: I'm so glad that you've got them in your life. And I also have a lot of reverence, like what you're talking about when you hear that not everybody has that. And there's, that's hard. And it's part of why I like doing these conversations and having an online community of people with chronic illness. Oh my gosh, it makes such a big difference to have even somebody you've never met before that you meet online who gets it. In some way.

Lashana: It really breaks my heart when I hear that people, they, their family doesn't understand or they're not supportive and it's like I can't even, I can only imagine, I can't relate, but I know how critical their support was during, during the whole, everything until this day.

Lauren: Yeah. So it's almost like, I want to say for the folks who have enough support in our lives, if we have it within us, it's really cool to be able to pass that on. You know, I'm curious because you have participated in the podcast cafe before and I know you're also on social media and stuff like that. Like have you made any new friends?

Lashana: I have. I um, one in particular this, this one gal that I connected with was through the Ocrevus service group. The medication that I take, they have a leveling online group of people and stuff. I did connect with her and um, it was amazing because you know what, so I use the assisted device, so does she, but I don't own it the way she does, like my photos, you're not going to see a single one with me with a walker. It's not going to happen. I just, I've embraced it, but I, I'm not very vocal about it and all those things. And she is, and it was amazing because when I first connected with her, um, she had not told anybody about her diagnosis. Right. But here she is like fancy cute outfits and you know, she's got her walker and I mean, and she is just lit up about it and her hair is done or makeup done. And I'm like, go ahead girlfriend. And she messaged me and she's like, if you, if you don't mind not, you know, mentioning the MS or whatever, like I only talk about it in the Ocrevus group. I was like, I'm slowly, that's your journey for you to say, you know, but I'm like, I like this woman because she's owning it. And she's like, I was opposite. I felt like I needed an explanation to be needing an assisted device. Like I don't know what's wrong with me, but I need this thing here. She hasn't told anybody, but she's just owning it and I'm like, I can learn something from this lady right here. It was amazing. I was like, I kind of envy her. She just bold and I love every minute of it.

Lauren: Sounds like she's been somebody who's enjoyed having you in her life too, huh?

Lashana: Yeah, yeah. We chat back and forth. We're definitely supportive of one another and um, it's been great having, you know, met her in person or anything like that, you know? But uh, I really enjoy, you know, and she's a mom of like, I think she has like seven kids, like ranging from like 20 years old down to like four. I'm like, woo, girlfriend. You got your hands full.

Lauren: So if you could go back in time and talk to the, you have before your diagnosis. What would you want her to know?

Lashana: I would want her to know that you are not the same. You, you're a greater version of self. Legit. A greater person.

Lashana: Wow, that's deep.

Lauren: Yeah. Even as you say that, I could see something awakening in you. Tell me more.

Lashana: Having MS and the journey up and you know, up into the diagnosis and has taught me many things that I don't think I've ever would have touched on in life. That being, I'm now a vulnerable person. I know what vulnerability is. I was a very independent woman, you know, self-sufficient, never was codependent upon anybody and it literally forced me physically to be vulnerable and let people help me. That's very new to me. And for the longest, I swore vulnerability was weakness and reality is the polar opposite. It taught me empathy. It literally took for me to go through this to be able to put myself in other people that took experience to be empathetic. I could always pity someone. I could always say, Oh, that's unfortunate. I'm sorry that you're going through that, but to put myself in their shoes and their perspective, that's a whole whole different ball game. I think the biggest thing that it taught me was patience. I think that kind of might be that millennial in me where it's like, I'll put in the work, but I need instant gratification. I'll do all the work, whatever, whatever I have to do to make this happen, but I need reward. With MS, patience is required. Nothing happens as fast as you want it to. Nothing.

Lauren: So you've learned patience in a way that you've had to live patients. I love that you said you are an even better you and what came up for me is maybe even more you, if that makes sense. Like you're more of yourself, more of your essence. In touch with your own human capacities.

Lashana: Absolutely. Yeah. I mean those are characteristics that I really think you have to kind of go through a challenging time to experience all of those things. Patience, empathy, you know?

Lauren: Yeah. Like, we can learn about it as a subject, but we need, we really have to walk through the fire. You do. It's a whole other thing.

Lashana: Yeah, absolutely. And I wouldn't change that for anything. It sucks that it had to be MS to teach me those things.

Lauren: Yeah. It'd be nice if it could be something else, right?

Lashana: Yeah. Just like wake up one day and learn empathy. Just be enough.

Lauren: But you were also willing to be in this process in an open enough way that you could invite in more empathy. I always like to acknowledge that it's, yes that the trials and tribulations, but also how you met them, you know?

Lashana: Yeah. I feel like I've kind of fast forwarded in life like I'm going to be 50 and maybe some people have never experienced those thing. You know, it's, it's, it's allowed me to be a better friend. It's altered my perspective on a lot of things in life and that's amazing, especially when I see it like affect those closest to me, you know, in a positive way.

Lauren: How have you seen it impact your relationships?

Lashana: Well in particular, my best friend was kind of going through, uh, you know, a rough patch in their marriage. They'd been together for years together since they were like their 13 teenager. You know, I was able to kind of help her alter her perspective on why, why the dynamic of their relationship had changed. And specifically I asked her, I said, have you reassured him that he is needed and that he is wanted? She says, no, no, I haven't. And I said, you're making everything happen on your own. He's probably feeling like, what's my purpose here? What’s my role? And she literally stopped and she was like, wow, I need to let him know that. And I was just so happy to be able to help because it's simple, but it's only simple when you have an aerial view of it and you're not face to face with it.

Lauren: Right. And you're able to bring that in, be able to see both of them, see what was missing and offer it. Certainly offer it in a way that she was able to hear it. Pretty cool. Yeah. What does it mean to you to live a fulfilling life and has your definition changed because of your health journey?

Lashana: It has changed. I think fulfillment is attempting to live my life without regret. To try all things. MS is limiting it. It puts limitations on your life, but as long as I try and give 100% I don't want to be 70 years old and look back and say, well, what if I would've just tried this? That's fulfillment is attempting all that you desire and at least try. You're not always going to be successful at everything. You at least took a try. And it's changed because prior to ms I feel like anything was possible and I try to keep that same perspective with the reality of knowing there are limitations and boundaries, physical limitations and boundaries, but outside of that, just try. I don't want to live in regret and I think that's fulfilling is, is trying all that you want.

Lauren: No, I love that. That's so cool. Do you have any funny stories from your health journey?

Lashana: Okay. So this was probably about a year and a half prior to diagnosis. We talked about my, my balance, right. So a girlfriend, my best friend, we've been best friends since like fourth grade and we went, okay, we, it was a day date. We went to go get some food, there's a Mexican restaurant and then we were going to go to the movies. So we go to this restaurant and I'm going to try to give you guys a visual of what this looks like. So the parking lot is in the back of the, the entrance of the building. So you have this sidewalk that goes from the parking lot to the front of the restaurant. So we're leaving, I had a great time, got some good food, got my leftovers and we had one margarita. That's it. Just one. So here we are chatting it up. We're walking back down the sidewalk. My girlfriend's walking in the inside, so she's closest to like the building and I'm walking on the outside, which is close to like the shrubbery in the little bushes and all that good stuff. And we're just chatting away. I don't know what happened. All I know is I ended up in the bushes and I'm like, Oh, this is, this is a great experience. And my girlfriend didn't realize it until, she's probably about, I don't know, five or seven feet away. And she turns back around and she's like, Lashana! And she comes in here I am trying to get myself out of the bushes and she comes up and she tries to help me or she helps me up and she's picking these twigs out of my hair, right? And I said, why did you let me fall in the bushes? She's like, girl, I wasn't even anywhere near you. What do you mean let you fall in the bushes? I was like, she's like, but your food is intact. You made sure to keep that. So here I have my to-go box and it's just perfect. I opened up, my taco is still, you know, and I'm like, priorities clearly.

Lauren: That's hilarious.

Lashana: And she’s like, after she dusts me off and all that and get myself together, she's like, I can't take you anywhere. People probably thought they over-served me or something. I had one whole margarita ended up in the bushes. But it was not just the margarita balance, it was the balance issue. Then it was just one of those where you kind of felt like, okay, it's happening and you brace yourself as best you can, you know, and uh, my food made it. I mean that, that's an accomplishment right there.

Lauren: what do you have now that you might not have had, although I think you've answered that in some ways, but however you want to answer that, what do you have now that you might not have had without

Lashana: Much more fulfilling relationships. With my friends and my family. They're on a lot deeper level. Again, filtered out those that kind of just weren't in line with my life and allowed me to really put my energy and time in growing and strengthening the existing relationships.

Lauren: Yeah. It sounds like in a way there's this connection between you're an even better you, there's even more of you in your life, the real you. And that also there is the same thing showing up in the relationships where they're even better than they were before that you've been able to get through so much together. You've been able to connect and allow folks to show up for you and tell them how much they mean to you.

Lashana: And that's exactly... let them show up for me because I was always that friend that always put in and was always wanting the best for everyone, you know? And it was my first time in life where the roles reversed and my friends got to be those people for me. Again, that vulnerability. And they showed up in ways that I had never seen them before because the dynamic had changed. And they showed up like clockwork.

Lauren: Wow. That is so special. It is. And I can just see in that look in your eyes how much it means to you.

Lashana: Absolutely.

Lauren: So finish this sentence… This is not what I ordered.

Lashana: Is a refund negotiable? Cuz if so, I’ll take it.

Lauren: And maybe a taco. Thank you so much for joining me.

Lauren SelfridgeFebruary 25, 2020