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This week on the Live Your Life, Not Your Diagnosis podcast:
Lee Kilborn is one of those special people that devote their lives to family and service to community. Finding her passion – and absolute talent – early on as a professional volunteer coordinator, Lee made the jump from corporate to work in non-profit.
Through her decades in service, she accumulated a volunteer “army” of 1,000’s that would do anything she asked – I know, because I was one of those volunteers.
While giving so much of herself to her community, her journey also includes diagnoses, a 100+ pound weight loss, and receiving multiple organ transplants.
Throughout all of this, Lee’s focus is still on family and service to her community as she finds her way to what’s next. Come hear Lee’s amazing story with her unique perspective on service, health, and why she still has so much more to give.
Guest Spotlight: Lee Kilborn
Wife, mom, grandma, sister, daughter, aunt, friend, and servant leader, who happens to be living with a chronic illness. Pretty coffee and babies make her world spin.
Connect with Lee Kilborn:
- Website: https://lolleewithms.lolleewithmsdropandgiveme20.com/
- Facebook: https://www.facebook.com/lee.kilborn/
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NOTE: This podcast was transcribed by an AI tool. Please forgive any typos or errors.
[00:00:00] Andrea: I am so excited that I am here with Lee Kilborn. Lee is a wife, a mom, a grandma, sister, daughter, aunt, friend, very good friend I might add. And servant leader who happens to be living with a chronic illness and she says that pretty coffee and babies make her world spin. I'm with you on the pretty coffee.
I don't know about the babies
[00:00:26] Lee: okay. Yeah.
I'll take all the babies.
[00:00:29] Andrea: As somebody who doesn't have kids, that's not so great. Not that I don't love babies. Oh my God. I'm going to get emails now. I love babies But Lee, welcome. I'm so excited to be talking to you today.
[00:00:40] Lee: I'm so excited to be here. I've binged the podcast over the last couple weeks and loved every single, every single one of 'em.
[00:00:49] Andrea: Oh, you're so sweet. Well, now you're going to be part of a podcast that people are going to binge this episode too. I promise. It's going to be so good. So a little bit of background. I met you I don't know how many years ago, like 10 years ago. Long time ago.
[00:01:03] Lee: At least. Mm-hmm. ,
it might have been more like 12.
[00:01:06] Andrea: it might have been. Lee was working at the National MS Society.
I was at the National MS Society as a contractor doing things like teaching coaching classes and workshops and things like that for them. And I will never forget it, somebody walks up to me and she goes, oh my God, have you met Lee? Like, have you met the Queen
[00:01:25] Lee: very
[00:01:26] Andrea: Have you? Yeah. Yeah. Have you met the Queen yet? And I was like, no, I have, I haven't met Lee. And she marched me into your office and was like, meet Lee, like I present to you . And I remember it was one of those things though, it was instant. I think we didn't get very far past like, Hey, how are you?
And then I was like sitting down. We were chatting. It was like an hour later. I mean, it was crazy. It was one of those just instant love at first sight friendship situations that happen.
[00:01:55] Lee: and, and I love those instant connections, you know? And it doesn't happen all the time in life, but it, when it does, you know, you know, and it, it was an immediate, yeah. Immediate connection.
[00:02:08] Andrea: So you have just, I mean, just an amazing story. I know it because I've been there, , with you going through some stuff, seeing you go through stuff. I know you to be just so. Like your power and your perseverance and your fortitude while going through all of this stuff is just to me amazing.
And I know, and I've said it before to you we're probably going to say something like, eh, I did what I had to do.
[00:02:38] Lee: definitely
[00:02:39] Andrea: But your story starts, I always say, our stories are not our diagnoses. They're not our illnesses. So your story starts in corporate working at a bank.
[00:02:53] Lee: Correct at a, at a financial institution. So, we were actually the technology sector here in, in the Dallas area. So I started there, it was really funny, the summer between my junior and senior year of high school. So I was 17 supposed to be temporary summer help and I came out 22 years later. It was a very long summer 22 years later.
And , what was really great was throughout that whole time, I mean, that is really where my love of community service was planted was working with it at that corporation. So really very involved in the community. And I was, I jumped in right from the start, from when we first implemented our first recycled program.
right? So nobody was recycling at that point. That tells you how old I am, but I was young when I started. I was only 17. But no, they, when, from that very first thing that very first effort at trying to make the world a little bit better place, I was involved in everything we did within the community.
And by the time I left, I was actually a senior officer running community engagement and special events for the communications area for the, the company here at the 1500 person office here. And that's where I really could passionately go. My goal of being of service and it was so great to be a part of something so big, and then to be able to actually be the person that was coordinating all of those efforts with numerous non-profit, organizations.
So yeah. When that company was sold, actually I took that opportunity, made a leap of faith, and after 22 years I had jumped over to the non-profit side of things. I set my sights on a non-profit career.
[00:04:42] Andrea: that is quite a leap of faith. I love that you found so early what your passion was. I think that's really lucky. Not all of us can find it that early.
[00:04:52] Lee: Oh, right. And so it, and what was really great was, you know, the, the company that we worked for was really, truly believed in doing things in the community because it was the right thing to do. You know, I, I believe we were, I know that the financial part of it was, you know, governed by the Community Reinvestment Act and all that kind of stuff.
So there were certain things that, you know, they had to do in the community, but it was really much, much deeper than that. It, none of the community development efforts were connected to marketing. So, you know, oftentimes the big corporations will sponsor events and that kind of thing, and it really gets their name out there and, you know, it's on all of the literature and, and all that stuff.
But that isn't what, we did not do it for that reason. It, the two weren't connected at all. So it was really an amazing. Opportunity. And you know, I made lifelong, lifelong friends there that have volunteered with me as late, you know, as last October , they came and volunteered with me with an event that I was doing.
[00:05:56] Andrea: That, just shows your power in this when people are still, people that you've known forever are still coming back and volunteering for you and, and excited to be a part of whatever you're a part of.
[00:06:08] Lee: no, that is, that was a, a real blessing when I took this role just a contract role with a, a nonprofit and needed some volunteers for an event. And it was so cool to see how all that came together because I had one lady and her sister and her daughters and that kind of stuff come and volunteer. They've been volunteering with me no matter where I was focused.
Like 35. So craziness. And then people that I met through the MS Society, you know, a lot of people from all walks of my life. And it's been very cool to see them all come together because they know, they know me. You know, we're friends and I, I do, I get connected to really great non-profits and different causes and they're happy to jump in
[00:06:51] Andrea: It's amazing and not at all surprising So you went into the nonprofit world, leaving corporate, taking the, taking the package, taking the check, as we say, went into nonprofit. What was that like? That leap of faith?
[00:07:06] Lee: Oh my goodness. it was actually not scary for me. . I just knew in my heart that that was what I was supposed to do. I've always felt like I was put here to be of service, and that's what has always driven me and been important. So I, I lost my grandmother that had a profound effect on me, and I made some decisions, you know, the company had already been purchased and weren't, you know, my future was terribly uncertain.
And I just remember thinking on the way home from Mississippi after her service thinking, you know, we only do this one time and life is too short to be unhappy or uncertain or scared. You know, I would, I didn't know what was going to happen to my future. So I thought, well, Then I'm just going to have to take the bull by the horns and figure out my future, you know?
And instead of waiting around to see what's going to happen to me, I need to make something happen. So I went ahead, took the severance package, and, and took off into Searching for a job in the non-profit world I knew there were going to be some things that went along with that, including a, an enormous cut in pay.
I knew that that was going to be part of it. , you know, when you go from corporate to non-profit. Yeah. And not to mentioned the lack of a facilities department was also a big surprise to me. So, you know, at the corporate, I literally grew up there and if it was too hot in our area of the building, we made a phone call and in a few minutes it wasn't too hot anymore.
You know, if I needed a keyboard tray, you know, I came back from lunch and my keyboard tray was installed. So, got to nonprofit and figured out, I mean, I knew what to expect, but I didn't take it this far. You know, I knew that I wouldn't have that kind of support, but when I needed a keyboard tray, it was up to me to go buy it, to go buy one, and then I had to figure out how to get it installed.
I didn't know how to install a keyboard tray, and I didn't. I mean, it used to, I just picked up the phone or I put in a ticket and it magically happened,
[00:09:10] Andrea: Look, a lot of us have grown up in corporate with, , first jobs, first part of our career, and with as much bad things that come from corporate as far as just being overworked and never really getting a break and all that kind of stuff. There are still some things that I miss about corporate. Like I, I worked at a hedge fund where we literally had catered lunch every single day. You would just, everybody would just go over and it was great. I'm like, Ugh, I miss that. And
you're right. Picking up and calling it, even if they tell you to turn your computer off and turn it back on again, like it's still nice.
It's still nice to have an IT department and even HR sometimes, my God, I wish I had an HR department. Sometimes
[00:09:52] Lee: Oh, for sure.
[00:09:54] Andrea: So understandably when you get into nonprofit, there's not, it's a little, probably a little bit of a culture shock.
[00:10:02] Lee: Oh, sure. It definitely was. It was things like that. And, and what, what was really funny was, because I ran the community development department and special events, but mostly the, the community development area, I would have budgets for different campaigns throughout the year.
So if we were going to do the MS walk, , I had a certain budget that could be used for prizes and t-shirts and that kind of thing within the company. And our United Way campaign of course, was huge every year. The biggest thing every year, that's what we did. And I. This ridiculous budget. I mean, we gave away trips.
, we did all kinds of stuff, , with just random drawings. Not based on what you gave, but just based on the fact that you turned your card in and that kind of stuff. Now that sounds funny because now it's all online of course. But back then it was an actual card. But when I went to the nonprofit area, the nonprofit sector, my annual budget was less than my United Way campaign.
That was one for the whole year. So it was really crazy. The good news is, , I had spent so much time, even in the corporate world, , rallying volunteers, signing people up for walk teams, , for different events, for bowling, , for all different kinds of things. And, and literally asking for everything, not just their money, but you know, blood and food and clothing.
So I had done that for so long. I got really, really good at asking for the resources that I needed. No shame either, like I said, I asked people for blood, for clothes.
Clean out your pantries.
[00:11:39] Andrea: I have been asked for a lot and there is no shame there.
[00:11:43] Lee: Mm, I have no shame. And I mean, and and rallying other people to do the same thing. Just I, like I said, nobody's safe. Nobody is sacred. I mean, volunteer volunteers were the same way. Like I said, they were just as valuable a resource as, you know, financial. So I had no trouble just asking people to join me in whatever it was that we were doing.
So that worked really well. The transition over into nonprofit, that worked really, really well, because I had all that experience and I had great connections so I could call, you know, people at, at the corporation or, you know, other corporations, people I knew through that world and get them involved either volunteering or financially or whatever it was that we needed at the nonprofit.
So the transition was amazing, but it definitely was a big. Culture shock, you know, just, it, it, I went from a building with 1500 people in it, you know, and a department that had 200, and then I went to an office of 12.
There were literally 12 people in the whole office. And it, so it was very interesting, you know, to go from kind of this big world to this tiny little place.
And, you know, it, it was just really bizarre for me. So the transition, like I said, well, it, I had the experience and the attitude that I needed to transition there, but the culture and the support and the resource of thing that I think is what was probably the biggest shock to me, to my.
[00:13:20] Andrea: Yeah. Did you pick the MS Society because of a specific reason?
[00:13:27] Lee: I did not. And that's what's really interesting. So, you know, I was diagnosed with MS obviously when I was working at the , MB and A and the, all of those people, you know, I had been there for a long, long time and they had literally seen me graduate high school, you know, get married, have a baby, buy a house, all those things.
They saw me literally grow up. So when I was diagnosed, that was in 2000. You know, I was pretty young, still not as young as you, but I was 32, I believe, 32, 33. And so I mean, they, they were my family. So when, when I went out, you know, when I took the, the severance package, I asked for it and, and decided to go save the world my own way.
I just knew that I wanted to be in the nonprofit sector. It was what I enjoyed the most, that connection being of service, all of that. So I looked around, you know, I took some time. I will tell you, I did take a few months off just to enjoy, you know, some time with my daughter at that point. We had kids that were 20 and 10.
So my 10 year old was my daughter, Hannah, that you now know as a grownup. But yeah, we spent, I, I spent the summer with her knowing I would not ever have that chance again. And then I focused my career search in, within the nonprofit sector. Well, throughout all of that, I happened to go into the MS.
Society one day to pick up some T-shirts and from my family from the walk. And it was really crazy. I realized that they didn't have anyone at the front desk, and I said, Hey, I mean, I knew them all very well. I'd been volunteering, fundraising, all of that kind of stuff for seven years. So I said, Maybe I can come up and answer phones and stuff for y'all sometimes because I'm not really doing anything right now.
Well, by the time I got home, they had a whole different idea. So, the executive director called me and I interviewed for a actual position that they had open for volunteer engagement. And a few weeks later I was, I was working there. So it was really just divine intervention, you know, a stroke of luck, a a, I don't know, but it, I, I landed where I was supposed to land.
[00:15:42] Andrea: I would say they knew a good thing when they saw it and snatched you up as fast as they could.
[00:15:48] Lee: Well, thank you. It was it was definitely mutual. I mean, I thought at first I was, I was a little hesitant to write at first because I was like, oh my gosh, this all just came out of the blue and I didn't even mean to do this. And is it going to be okay? And, you know, it felt kind of, I was afraid that it was self-serving.
because I happen to be living with MS. And I thought, well, I don't want it to, I want to be of service and I don't want this to be something where I'm, I feel selfish about it, or I feel, you know, that I could be helping another group of people or something until I finally had to make myself realize, you know, it's, it's not about me.
I would be working in non-profit somewhere, you know? I had interviewed with some other non-profits and stuff and planned to do, planned to just keep doing that. So it's not like I set out to work at an organization that served people diagnosed with MS. I didn't mean to do that. It just happened.
And at first, you know, I questioned that quite a bit after I, well, first when I accepted it, you know, before I accepted the job. And then even after when I was there, you know, I, I. I still just wasn't sure that it was the right place and that it, that was actually my purpose. So it took me, I don't know, I want to say eight, 10 months before I finally realized these two things don't have anything to do with each other.
My diagnosis is my diagnosis, and when I go to work every day, it's not about me. It wasn't about me. I just had to put things in two different boxes and say, okay, yes, I have MS, but when I'm at work, I, I never addressed problems. I never approached topics or meetings or anything from a person living with MS standpoint.
I didn't do that. I had to approach it from a professional standpoint.
[00:17:43] Andrea: that's interesting. I mean, we talked a little bit about this because , both of us have MS and both of us have been in a role where we are helping, directly helping other people that have MS and how you do have to get to a point where you compartmentalize.
But I do think that it's interesting that you didn't feel like you wanted to come into meetings or talk to people about the perspective of a person living with MS when you were kind of the avatar of who they were helping.
[00:18:15] Lee: right. So it, yeah, it was just interesting that, that really never, it was just never the way I felt about it, ? And I will tell you, having worked there for, 13 years, of course I was a volunteer for seven years before that. I definitely worked with people, both staff and volunteers, that that was the very first thing that was their opening.
No matter what the situation was, their opening was, , I have MS and here's what I have to say. And I just, I, I, like I said, I didn't ever want it to be about me. I wanted it to be about the people that we were helping and serving and, , making sure that we were raising the money for more research.
Not necessarily for a cure for me individually, , but for the people, the whole community. And I mean, I, I worked with some people that it was absolutely their main focus and it came out in, in ways I would just never have wanted to be perceived, you know? And some of it really was upsetting for me because I never, I just didn't approach things that way.
And if we were, if you were there and you worked there, you needed to be professional, and this wasn't about, recognize, it was not about you. It was about what we were doing and our mission, not about what's going on for Lee personally.
So I had a
trouble with that.
[00:19:40] Andrea: Yeah, it's a really interesting position to be in. I am the same way. I mean, if obviously, like I talk about it, it's, no, it's no secret . When you write a book and you host a podcast, it's no secret that you have MS. But I like, if I'm just talking to, you know, Joe Schmo on the street, I don't lead with it and I don't really talk about it.
And it really depends on the type of conversation on if I even bring it up. Even if the other person says they, they have some kind of chronic illness, I don't even necessarily bring up mine just because it just depends on what it is and, and what the context is. But it's, it's, you're the same way as I am where I think, and you can tell me if this happened to you from the very beginning for me.
Pretty much from the very beginning I made that delineation, like, I am not my MS. I am not, that does not define me. That is not who I am. That is not what I'm going to lead with. That is not what I want people to think about. And it's not from a denial perspective, it's just that we never, we never took on that identity of MS.
And I think you were probably the same way,
[00:20:56] Lee: Oh, absolutely. In fact, the crazy thing is Andrea, it never even occurred to me. It didn't even occur to me that I was supposed to just say, oh, well that's it. You know, that's who I am and I give up and this is the way it's going to be. It not that I thought I could, I I, it certainly wasn't denial. I mean, I knew what they had told me was true.
Although I do have to say I've had to switch neurologists several times over the 20 something years I've been diagnosed. As you do, people retire, they move on or whatever. And I will tell you that every new one that I've seen, including my new one now that I've only seen for about three years, I have asked them, knowing what you know now and seeing my scans and all of that, would you still diagnose me with
I would just still to give me the same diagnosis. And all of them have looked at me and just shaken their head and said, yeah, we would. I'm like, Ted Gummit, . Damn it. I was trying to make you say, oh no, they're wrong. That's not
true. So, and like I said, it's not about denial, but I do make sure that I'm asking the question.
But it really, truly never occurred to me that this. Was my life, well, I decided very early on, or maybe it's just the way I am, this is a part of my life. It's something I have it's not going away. So I just needed to make friends with it, T hat's what I thought. I was like, well, if we're going to share this body, then we just gotta make, room for it because there's nothing else I mean, what else was I going to do?
And I know it, doesn't mean that I gave up or that I didn't have the fight in me or whatever. Because believe me, I fought through a lot of it. But it's just was, it was never an option. Never something I thought of, and, it's just like, people would say, well, I don't understand why this would happen to you.
And, I'm like, but, tell me why it wouldn't, that's what that was kind of always my thought process was, well, what would make me so special that I shouldn't have gotten that That I should escape having a chronic illness. I'm no different than anybody else. So why? It's just funny how people look at it that way.
Well, I never said, oh, why me? Well, why wouldn't it be me? I'm no different than anybody else. And people get stuff all the time. And I, I don't know where that came from, Andrea. I can't tell you where inside of me that came from, but I just knew that this was something I was going to have to deal with.
And that's what exactly what I've done. , I've made adjustments where I absolutely had to, I've pushed things way too far sometimes, and been paid the price for it physically. You know, I've done a lot of things right. But I just, like I said, I just need it to be, it's part of me, part of my life, whether I like it or not.
So whatever, it's just like anything else in my life just happens to be not so fun.
[00:23:51] Andrea: Yeah. Well, and I think that says a lot, just, just right there, talking about how you dealt with this diagnosis. It. it says a lot about how you have gone on and dealt with some of the other diagnoses you've had as you've,, as you've gone on.
[00:24:10] Lee: Right Because things have definitely been very interesting over the years. I remember one time they had my ns was, was super bad. It's not, not going to make a big, long story, but it is pretty dramatic. So I, we had a party going on at the corporation where I worked special event. And it was huge. And I worked it and I worked on it for months and I worked and worked and worked.
And when I left that evening when the event was over, my husband Craig basically carried me to the car. Because I could no longer walk or stand up on my own. Got me home and I was out of work for the next six weeks, . So that was an interesting adventure. So at the beginning of that, I had talked to my neurologist, said, Hey, this is what's happening.
I feel like I'm going to die. And they said, well, let's do an IV steroid treatment. Well,
[00:25:10] Andrea: Those are some special places in hell
[00:25:14] Lee: let me tell you,
[00:25:15] Andrea: steroid treatments.
[00:25:17] Lee: oh my gosh, and I had to do it so many times over the years, but this first one, what nobody knew was that apparently I had high blood sugar. And when you take steroids, it shoots your blood sugar through the roof.
So by day three, Because back then I was having to go into the hospital, have the IV, and then go home every night. By the end of the third day I was very, very, very sick and , couldn't get enough to drink, had no idea what was happening to me. I was, I couldn't even think straight. So my husband actually called the neurologist and said, Hey, you know, she is not right.
What's going on? And he said, well, get her to the emergency room if it's more than 15 minutes away, take her to your fire department. And Craig's like, well, okay. So he gets me in the car and we take off. And I remember opening my eyes in the car and thinking, we are going at the speed of light and I don't know what's happening, but he's getting me where he needs to get me.
So when we got to the hospital they took my blood sugar and the girl turned the. Thing around to me that the thing that counts at there wasn't even a number, Andrea. It just said critical. So next thing I knew, there were people all over me and you know, they're giving me shots and all this kind of stuff, and my husband's standing in the corner just with his mouth hanging open, like, what the hell is happening?
So after they had given me at least three, in three shots of insulin, my blood sugar had come down to like 700. The doctor told me they had no earthly idea how I hadn't gone into a, a coma. And I was like, well, I, I didn't even know, but we had no idea what was happening. Had no idea that my blood sugar was even high to begin with.
So, yeah, so that was an interesting story. Very dramatic. I didn't have to stay too, too long. I know. I was
[00:27:16] Andrea: You're so funny. It's so dramatic.
[00:27:20] Lee: I know. So dramatic. It was this crazy trip to the hospital. But yeah, so that was crazy. So, then finally, you know, I came home and I was like, well that was even worse than the iv, right?
Which is what started the whole crazy thing.
So anyway, I was out of work for six weeks, finally able to go back and I'm like, maybe I should not push quite so hard anymore. , maybe I really didn't have to work, you know, 20 hours a day for months to make that event what it was. But it was great. It was a great event.
but you know, yeah, I paid for that one. I paid for that one. So, yeah, I mean there, and then of course I, all this other health things that have come up, I did eventually that the blood sugar is normal and all that went away, but it did take years because I had to do those IV treatments
over and over and over and
[00:28:17] Andrea: I, Yeah.
[00:28:18] Lee: The more I did them, the more weight I gained, which made it harder for me to get around, which made my legs go numb, which made me have to do another iv. I mean, it was this vicious cycle. It was like the steroids and then the weight gain, and then my legs would start to go numb again. And then it was the steroids and then the weight gain.
Well, the problem was I never lost any of that weight, and I was so swollen and it was awful. So I got weight reduction surgery. I got a a gastric sleeve in 2016, I believed, and I lost about a hundred pounds and everything went away. ,
except for the
[00:28:59] Andrea: I remember that. I remember that. It was like, almost like a light switch. You
were like, this is amazing. I, I don't have this anymore and this isn't happening. And
it was, it was pretty, it was pretty dramatic and pretty amazing.
[00:29:13] Lee: It was, it was really the best thing I've ever done for myself, because I finally figured out, okay, the MS isn't going away. The more weight, the, the more steroids I do, the more weight I gain, which was causing even more trouble for my body. And I thought the only thing I can possibly change here is, is to have weight reduction surgery.
And it was a long process and it was scary and it was painful and all of that. But at the end, I mean, it was so totally worth it. I went into the hospital for that surgery on 13 different medications every day. And I came out on five. Just from the initial weight gain, weight loss in the hospital because it was so much water.
So the weird thing is, during that surgery my gastroenterologist, the surgeon actually figured out that my, he happened to look at my liver and thought, that doesn't look right. So he pulled a piece off and sent it away to be biopsied. So while I was in recovery my doctor went out to talk to my husband, tell him everything went well.
But he asked him, you know, is Lee a drinker? And Craig's like, no, she
a drink. And for years, you know, she hasn't drank since we were kids. And the doctor's like, He said, no, really? She doesn't drink. She hasn't, since we were, she was in her early twenties. And even then I wasn't, I didn't drink heavily, so he told him her liver is in bad shape and I've sent a piece off her biopsy.
So I came back that I had stage four cirrhosis of the liver. Now I was very confused because I thought at that time that the only way you could get cirrhosis, I, you know, attributed it to alcoholism, which obviously is what the doctor was asking, you know, is did I drink a lot? And he was like, well, I knew she didn't seem the type.
And Craig said, no, she's, she's not. So it was really bizarre and just out of left field and I'm thinking, wait, this cannot be right. You know? How in the world did this happen? Well, long story short, it happened. Obviously not from drinking alcohol,
but whatever it happened, and I, there's nothing at that point, there was nothing to be done. But wait so I just
[00:31:45] Andrea: Thankfully that doctor had the wherewithal of saying like, this is, this doesn't look right. Let me go ahead and investigate this. Even though it had nothing to do with why he was in there.
[00:31:55] Lee: well, and absolutely because, , you're right, I didn't have any symptoms. No one suspected, never, my blood work never showed like elevated, , liver enzymes or anything like that. So there had been literally no indication of liver disease. So yeah, thank God he, I decided to have that surgery and that he saw it and thought that does not look.
you know, so I knew pretty quickly after all that, that I had cirrhosis stage four and end stage is what they called it. So I was like, what in the world do I do? They said, well, nothing, if you don't have any symptoms, don't worry about it. There's nothing you can do about it. There's no saving it.
The liver can regenerate, right? But not once it's, to that point, had it been earlier when they caught it, then it would've possibly, they could have possibly helped, help it recover itself. It was already too late by the time they figured it out. So five years or so went by and nothing.
I mean, I didn't have a symptom.
[00:33:01] Andrea: what Was that like? , what were you thinking? What were you feeling at the time when you
knew that this was happening?
[00:33:09] Lee: honestly, Andrea, after a while you know, a few months or so, I just didn't think about it. It didn't hurt me. Not that I didn't have any symptoms. So the only thing was every six months I had to go in and get a scan, like a CT scan and something they call the, a doppler of my liver in that area.
Just making sure that the blood flow was good, that there weren't any tumors, right? So they were worried that I would develop liver cancer, so I'd go in every six months I'd think about it then, because I had to go in for the scan and never anything, every time it came back they said, looks the same, no tumors, no.
Whatever you're doing. Great. So, really, I, I thought about it when I had to go get the scans, but because I didn't have any symptoms and. I have a very full life and plenty of things to be focused on. Thankfully, that just kind of fell to the background. And then then 2020 happened, so I guess it was really only three or four years after the surgery and 2020, the shithole that it was happened and everything, everything changed.
So yeah, that is when I got Covid and never fully recovered. I mean, within a month or two we figured out that I was, that my liver was failing, so, had to go through a million tests, you know, that took months to complete. And I had to see so many different doctors and, you know, they, they figured out I had to have a transplant.
So I wound up on the list for a liver transplant. Of course my MS diagnosis. Came into play with all of this because they're trying to figure out, , they didn't want me to take my MS medication because of course it's processed through the liver and they were worried it would cause more damage.
And I'm like, well, but it's already at stage four and what am I supposed to do about my MS? I, I refuse to not take any medication for it. So you guys better figure something else out. Because I've been on medication since a couple of months after I was diagnosed. Now I've had to switch a couple of times in there, so there have been some minor breaks.
I'm talking a matter of a month, maybe , and they wanted me to just be off of it until I got the transplant and I was like, no, I will not do it.
[00:35:35] Andrea: did you know how long that was going to be before you had the
[00:35:37] Lee: Well, no, no.
I mean, I was on a transplant list.
[00:35:41] Andrea: so they wanted
you off the medication for some unspecified amount of time.
[00:35:45] Lee: Exactly.
And I was not willing to
do that. And I know that there are people with MS that don't ever take any medication for it.
They don't take any disease modifying drugs. That is fine. That is fine for you if that's, but, but no, I figure, you know, even if I weren't going to do it for myself, I owe it to those people that love me to at least give myself the best chance that I can have. So, you know, I've
always been on the medication,
[00:36:13] Andrea: Yeah, we're not knocking anybody who doesn't take medication. Totally. Your call, because I'm the same way. I basically, from the day I was diagnosed, I've been on some kind of medica like it's changed, but some kind of medication. And for us to have somebody say, you can no longer take medication is kind of the equivalent of someone who has never been on medication and doesn't want to be on medication.
Somebody telling them you have to be on medication. It's that same, like, no, this is not how I am choosing to do this. And you know, different people have different types of, I mean, MS is different in every single person, and so I wouldn't
[00:36:49] Lee: Well, absolutely. And they didn't even have, you know, thankfully, I, I have obviously relapsing remitting. I know you do
two, ,I believe.
But you know, for a long time, Andrea, they didn't have medications for people with pri with primary or secondary progressive MS. They didn't even have medications developed.
So for a long time they, those people didn't have an option. You know, we just happened to fall in that category that we had the options. So, you're right, I, and I don't care what kind of medication people take or whether or not they decide to do it, I just know that what I needed to do for myself and my family, so I refused to stop taking that medication.
I was like, you're going to have to give me a different alternative because I'm taking it, you know, , so, Anyway, long story short, before they could get me the liver transplant I wound up in the hospital with infections a couple of times. One in my leg and then one in my stomach. And then I wound up in there for dehydration and malnourished.
I was now malnourished and dehydrated. And so they kept me awake. They did all this stuff, kept me on, you know, IV liquids, fluid and all of that. And long story short, before I left they diagnosed me while my kidneys had failed, my kidneys were failing as well, so they put, put me on the kidney list along with the liver hoping obviously for a single donor for both.
But who knew how long it was going to be and how much longer I could hang on because I was very, very sick at that point. It wasn't even a week they called and had a potential donor. Wanted me to come in and have all the pre-op stuff done and I did. And next thing I knew, I was in there in surgery.
getting a new liver and a new kidney.
[00:38:42] Andrea: So tell me how, what were you thinking during that week and even during that month? Because I know how it felt on the outside looking at you. I mean, I, I can tell you now, I was terrified. I was so, so scared because I didn't know, I mean, obviously I wasn't there with you knowing every single. Thing that was going on, but I was, I was just holding my breath and just, thinking about you and praying for you every single day.
But what was it like on your end? Because I know that when we're going through big traumas and big things like that, it can be very different with the person going through it. And oddly, sometimes it's not quite as scary because we're, we're thinking about
[00:39:25] Lee: Exactly right. And so I will tell you, , leading when I was really sick and before my kidneys failed, I did just keep getting sicker. And so emotions ran very, very high in the house, , and there at the moment, are eight of us here and a cat and a dog.
So it was a very emotional time. , my family was very afraid, but of course trying to be brave and supportive and all of that. And I, of course was trying to not let anyone know that I was. Afraid. , I was trying to, I've always, that's kind of a critical flaw for me in that I'm always like, no, I got it.
Everything's fine. , not that I won't talk about my feelings, because believe me, I do. But, but in those kinds of cases, I'm like, I'm, it's going to be okay. , I, I've always been kind of that central part for our family, and I couldn't, I couldn't be, so I do remember having a discussion with my sister and saying, I need you to be this, and if there's, if something does happen, I need you to do these few things.
Take care of my girls, , that kind of thing. And I had that conversation with her, , I told her early on in the process, she was going to have to be my person, , that I could say, speak the, Bottom line facts too. And she handled it. She did. It was, I know, can't imagine how hard it was for her, but she did.
kind of a blessing. I think that the more time that went by and the sicker I got, the more, I don't remember Andrea. So there's a lot of space and a lot of things that I have no memory of. ? I know it was a miserable time. . I know. I was absolutely miserable. I know my family was miserable. I cried a lot and I slept a lot.
So thankfully, , I don't remember a whole lot. And, and I know that when I was in the hospital and then they sent me home with the dues that my kidneys were gone to. I don't remember really feeling anything. I don't remember thinking. Oh, , I hope that this works, that they find someone soon, or I hope that I live, , I guess on some level I understood that I could lose my life, but I didn't, I didn't live there, you know what I mean?
I just was like, okay, I'm going to hang on today and we're going to, , it's going to be okay. I'm going to get through today. And that's just what I told myself, , and I don't remember a lot of details. I, I do remember when they came in and told me that the organs were viable. , On one hand, of course, I was so relieved, but I also was terrified, , that something would go wrong and I wouldn't make it anyway.
And then I was utterly devastated to know that someone else had to lose their life, for me to have mine. And that somebody else's family was going to have to have that feeling of loss. , it was devastating. because I just kept thinking, you know, who am I, , who am, why am I special? Right? Why does this person have to lose their life?
[00:42:45] Andrea: Mm-hmm.
[00:42:46] Lee: to stay. So that was a hard feeling.
[00:42:48] Andrea: how did you eventually reconcile that or have you.
[00:42:54] Lee: actually, I'm not sure that I have Andrea, I still, sometimes it hits me and I just think, I mean, I remember not long after the surgery, even probably still in the hospital, telling my best friend in the world. I remember telling her, , I would give them back if that family got to keep him. , I would, I swear I would give them back if, , it meant that someone else could live.
And thankfully she was smart enough to say, well, Lee, someone gave these so that you could live, , people choose to be organ donors. They choose this. And, or, or even if he hadn't, his family was able to make that choice and to know that someone else was going to live. That something came out of this and God love her.
, I needed that because I was just so horrified, , that it had to happen that way. So there are times where I still think, oh my goodness. , I hate that. I hate that for his family. I hate that for him. I, I hate the whole thing. And I still have not been able to bring myself to ask much about him or the family or anything, , because I, I could get some information to them so that they could contact me.
[00:44:12] Andrea: Oh really?
[00:44:13] Lee: I, I have to say, I, I am, I am not strong enough to do that yet. I'm not, I would not be able to have a, a coherent conversation , you know, or to
[00:44:22] Andrea: Well,
[00:44:23] Lee: to them how I feel, you know?
[00:44:25] Andrea: and it, it hasn't been that long though,
right? I mean, it's, it's, yeah. Yeah. It's, I mean, I feel like, it sounds like on some level you are grieving the loss deeply of someone that you, number one, have never met, and number two has done the ultimate in service and giving. And I can tell you one thing without even looking at it, your love language is service and
[00:44:57] Lee: is true.
[00:44:58] Andrea: I can imagine that it takes a little bit of time.
[00:45:03] Lee: Mm-hmm., I can never be able to express my gratitude, I don't think. And, , not just to the donor family, but also to the so many people in this world that, that helped me and my family through it. You. Financially, emotionally, , bringing food and, and it, , remember we're in the middle of the pandemic, not in the middle of it, but, we're in a bad place.
And, , I couldn't see people, they couldn't come in, , I couldn't have visitors at the hospital other than, one family member a day. So I mean, it was really hard. And there were just people from all times of my life that came forward and, , it was crazy. So I'm very, very grateful, , for the whole thing, , for my family, for, , when I was so horrible, especially when I came home from the hospital, Andrea, I was on the most ridiculous amount of steroids ever in the history.
While I was in the hospital, I had an IV and was taking like 60, was it 60, 120, some kind of maybe 120 milligrams a day.
I mean, I was a lunatic,
[00:46:14] Andrea: for those of you, because I know not everybody knows the, the wonderful world of steroids. The way that, that Lee and I know on one hand, yes, they work, they do amazing work. That's why they've been around. On the other hand, like you said, it turned you into a stark raving lunatic.
Just a lunatic that, and you're like on the war path for no fucking reason at all.
Like, it doesn't ma like your orange juice container could be low and you are out for blood. I mean, it is. I am not kidding when I say it is a special part of Hell
[00:46:53] Lee: Yeah. It
[00:46:53] Andrea: But It
works. But It
works. I used to sequester myself when I was on steroids. I used to literally turn into a hermit. I was like, I don't need to be around anyone right now.
[00:47:03] Lee: That's what I would say. I am not fit to be around people. And so, and that was when I was on, the dosage for treating, you know, the MS exacerbations was one thing. This was like steroids on steroids. It was just an overwhelming amount. So, you know, I, I was terrible and, I cannot believe that I actually, my family and, and my friends and people actually didn't smother me with a pillow because I was just so crazy.
So crazy. And, , I'd get on these things where one, , just one thought process was all I could, I would pick up. And I would just stay on this subject, whether it was crazy or not. And, and they'd all be just like, huh, what is she talking about? So I was really out there. And like you said, sometimes I was angry, , and didn't even, couldn't even believe that I was saying the things I was saying.
And thankfully I didn't cuss anybody out or anything, but I was like, that is not me. What am I doing? You know? But I couldn't help it. And other times, crying uncontrollably and you just have no control over your emotions at all.
[00:48:11] Andrea: right?
[00:48:11] Lee: So that was really amazing that everyone that loves me still loves me.
said I'm out . So that was a long, that was a, a definite upheaval and very just, it just sucked because I'm like, look, so I have this chronic illness. I live with it every day. Yes. Sometimes it acts up, sometimes I have to tell my family, Hey, today I have MS. Not getting around. Well, you know, or I'm so fatigued, you know, I, I pretend like I don't have it every day.
I don't have it when it bothers me.
[00:48:45] Andrea: Sure. Well, yeah.
don't think there's anything wrong with that,
[00:48:50] Lee: mostly I
just ignore, if it leaves me alone, I leave it alone,
[00:48:53] Andrea: yeah, that's a really good way of putting it.
[00:48:55] Lee: mm-hmm.
[00:48:56] Andrea: Yeah.
[00:48:57] Lee: Yeah. And, and it's true. I just figure, okay, if I don't, I'm not, I'm not really all that concerned with it until it starts jacking me up. Right. Then I'm mad because I'm like, this is my life. I don't have time for this
[00:49:09] Andrea: Yeah.
[00:49:10] Lee: But I, I've learned, like I said, I've learned to listen some so anyway, yeah, I was already like, okay, so I've got this going on.
Then we have the pandemic. And oh and, by the way, I got laid off in the middle of all of that, and then, And then this, you know, and I'm like, are you serious? Not that I, like I said, not that I ever asked, oh my gosh, why me, why did I have to do this when I've already got this? But it was like, son of a bitch, I need a minute.
This is crazy. , how did things just get, just spiraled, ? So clearly past all of that. Now, , I'm definitely I'm going to say 90% myself. , I, I don't know that I'm a hundred percent yet. I'm not sure that I know what that looks like anymore at this point, right? I mean, I, I have some learning still to do about
[00:49:58] Andrea: Mm-hmm.
[00:49:58] Lee: exactly what what is Lee at a hundred percent, what does that mean, right?
And I think it just means happy and I don't know. I guess, and I'm just, I'm not quite there yet. , I'm happy most of the time. Content, not so much. , I'm trying to figure out, like I talked about the other day, I told you, , I'm trying to kind of build my future, not just necessarily, find my purpose in life, because I'm pretty sure I understand my purpose.
I just need to build it. , I'm in a position that I haven't really ever been in before in the fact that I have options, I have choices. I never, ever thought, never did I feel like I had the choice to not work. To a knob, I thought that's what it was. That was my life. I, I love working. I am, I, I gave it everything I had and still , of course maintained a, a marriage and a home and, and parenting and all of the things, friendships, all of the things that, the hats that I wore, that I wear and never considered that I didn't have to work full-time for someone else.
So that's all I knew. And now all of a sudden I'm face, yes, I could do that again. But I don't think I want to. So trying to figure out what, how this looks moving forward and what are my real options. I, I don't just, because that's the way I did life for, 40 years doesn't mean I have to do it that way again.
You know, I don't have to continue to do it that way.
[00:51:42] Andrea: Yeah, it's an interesting crossroads that we can be at. It's, we have. So many different identities within ourselves, right? We have our health identity, which can be rocked again and again and again. When you have something like MS or you have other conditions that develop, we have our identity as a partner, our identity as a mother, if we have children, as a grandmother, and, and one of those identities is our work identity, our career identity, and moving into a different identity can be just as big of a move as it can be with figuring out what Lee's 100% is as far as your health and how you feel, right?
Figuring out what Lee's new set point is with what you want to do with your career. It's exciting, but then , it's also a little bit of like a, Switching identities, which can be rocky, it can be a little bit unnerving sometimes. And sometimes it's, it can be where our old habits from corporate or even from non-profit because it's not like non-profit is, smooth sailing and it's no big deal.
Like you kind work, you kind of work yourself to death at nonprofit too. But these old habits can come back and creep into this new identity. And so there's a lot of work. I know for me, I had to really pay attention to that and really do a lot of work on myself to not have old corporate Andrea creep into new, you know, new business, Andrea, because it totally can.
And so it's, it's just as much as of an identity switch as a lot of other things.
[00:53:29] Lee: Oh yeah, I am definitely , I, and I spent this last year really adrift, , I, I struggled a lot with what do I do now, , or am I ever going to be able to do anything again? , am I always going to be this week? Am I always going to be this tired? Obviously the answer to that is, to those things was no, , that I just had to give myself a little bit of time to recover and recuperate.
I'm not good at that because I, I, I'm not, I don't, I don't sit around, well, I need things . I, I do, I do things. I'm busy and I've got places to go and things to do, and, and I'm always, you know, what is my next adventure? And, I'm always
looking, I'm always one step ahead of myself,
[00:54:13] Andrea: you are always, you will perpetually be like the bride at the wedding. Like it's just . You are always doing something. You're always
[00:54:20] Lee: Always. Yeah. And, and I love it. I mean, that's how that, that gives me energy, you know? I love that. And I wasn't, I, I truly physically wasn't able to do it. There have been times living with MS that I haven't physically been able to do what I want to do. Other times where I've had to alter that and do it a different way.
Okay. So maybe I can't physically do what I've been planning to do, but I'm just going to give you case in point, national conference here in Fort Worth. I had a big, big part of it trying to pack up my stuff to go to Fort Worth to get ready. And I mean, it was ridiculous. Andrea. I couldn't even walk around my room to pack, but I was trying and I was determined I was going right.
[00:55:08] Andrea: Mm-hmm.
[00:55:09] Lee: my husband finally came in and I was sitting on the bed and he said, are you okay? and I just started crying and I was like, I, I, I can't go. I can't go. I can't actually walk. And he said, you know, thank God he sat down on the, on the bed and he was like, thank God you have come to this realization. Cause he knew better than to try to say anything to me.
Cause if he'd had tried to say, Lee, I don't think you should go, oh, I would've had a cow. So he is like, I'm just going to stand back and wait until she gets there. And I got there and he was like, you're right. You cannot, what are you
[00:55:43] Andrea: Mm.
[00:55:44] Lee: So I'll tell you what I did. I ran my portions of the conference in a recliner with ice bags everywhere and an iv, a steroid at IV in my arm,
And I did everything on the phone and through the computer. It was ridiculous, but I was not going to miss it. I had worked for months and so much had gone into it and. I wasn't going to not be a part of it, so I couldn't be there. And I hated that part, but I was still going to do what I needed to do. Of course, I rested in between, you know, but yeah, from a recliner with the IV and and ice packs.
So sometimes you just have to change your perception, , okay, I realize I can't go there and do this because I can't walk around and I'm not going to make it. But if I get a nurse out here to get an IV in my arm, I can, I can do this from the recliner. And that's exactly what I did. And it's what I'll do now.
I know that I'll come up with exactly the right thing. I'm doing some contract things and love it, , so getting to do be a part of like the non-profit events and things that I love so much. So that has really helped kind of ease me back into the world. And I don't know where I'll land, but I know it'll be happy.
Just gotta get there.
[00:57:07] Andrea: I love it and I know you will. I have no doubt at all. Lee, thank you so much for coming and sharing your amazing story and being just so honest and open with some things that so many of us go through. And, , even those dark moments that some of us are in. And giving us that different perspective.
[00:57:28] Lee: Yeah. It's all in the way you look at it. So it's not always, you know, I'm not all sunshine and rainbows, believe me, but, you know,
I, I left to my own device. Yeah. You do know. Left to my own devices, though I'm generally a pretty happy person and, and really know that I, I really do believe that everything that happens happens for a reason.
And, and I, I feel like I was put here to be of service and I was, able to stay here. Because I'm not done and I know that, so I just have to figure out what it is. But that's why I believe we were all here, you know, was to just be there for each other. And I know that sounds kind of cliche, but it's how I feel.
You know, I need to be of service and I'll figure it out.
[00:58:18] Andrea: you're not done. You
are not done. Well, Lee, thank you so, so much. I really appreciate it.
[00:58:25] Lee: well, I have loved every minute of it, so can't wait to talk again soon.
About Live Your Life, Not Your Diagnosis
Hear inspiring discussions with people living with chronic illness. These people went after their passions and big goals -even when everyone told them they couldn’t. Listen to stories of resilience and gratitude in the face of uncertainty.
I’m your host, Andrea W. Hanson, Author, Motivational Speaker, and Autoimmune Rebel living with multiple sclerosis. You’ll not only fall in love with these guests, but you’ll soak up positive mindset tips and ideas to find your own unique path to success.