Real stories, told by real people.
Happy New Years!! Hope all is well, It's good to be back with another sit down, we've got another Story to share. Today Rachel joins us, and she has a story to tell.
"From a Kick in the Head to a Kick in the Ass" is the name of Rachel's memoir. Initially, it was only meant for her two boys. She raised her kids without telling them exactly what was going on with her health wise. From infusions to Ocular Melanoma diagnoses and therapy treatments, she kept her condition hidden from both her boys.
This memoir was Rachel's way of giving her boys a peek behind the curtain. An explanation to those treatments, therapies, and, in her words "so they could see life wasn’t bad and, as a family, they made my life a lot easier to navigate."
Listen to Rachel's optimism, and her refusal to "throw a pity party" , the joy and love she has for life, and for her family, and the resilient spirit which no diagnoses, disability or medical condition can choke out. I'm pleased to introduce another GIANTS AMONGST US. Hope you enjoy the conversation, and feel free to share some of your own thoughts on any of the platforms listed.
'Til next time
and very soon,
PEACE!
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Rachel Sindaco :
https://www.amazon.com/dp/B0FJVGFCLT
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Intro Song :
MS Blues - A Song about Living with Multiple Sclerosis by Andy Reynard :
https://youtu.be/KRUOOxzaSG8?si=5SjIhhX-9IL2nsX7
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Background music by :
@bnoizemusic
00:00:04 --> 00:00:13 If I lose my sight I'll talk with the sun Will
00:00:13 --> 00:00:54 you be there to understand me? Right, here we
00:00:54 --> 00:00:59 are, we're high stepping into the new year, 2026,
00:00:59 --> 00:01:03 about a little over a week after the fact, but
00:01:03 --> 00:01:06 happy new years, and it's good to be back. I
00:01:06 --> 00:01:10 hope you all enjoyed some good family time, some
00:01:10 --> 00:01:15 good food, and a nice, warm, cozy, loving environment
00:01:15 --> 00:01:18 to enjoy that holiday time away from the hustle
00:01:18 --> 00:01:22 and bustle of trying to consume and gather up
00:01:22 --> 00:01:26 all the toys and the gifts to give out but aside
00:01:26 --> 00:01:29 from that the time to reflect and appreciate
00:01:29 --> 00:01:36 the love that you have and the the blessings
00:01:36 --> 00:01:38 that are in your life so i hope you're doing
00:01:38 --> 00:01:42 well i hope you're feeling well this is giants
00:01:42 --> 00:01:46 amongst us this is a place where we share and
00:01:46 --> 00:01:48 the unique human experience, and this is where
00:01:48 --> 00:01:51 you're going to hear real stories that are told
00:01:51 --> 00:01:57 by real people. People just like yourself. No
00:01:57 --> 00:02:00 matter where you're at right now or how deep
00:02:00 --> 00:02:02 a hole there is, there's always a rope to grab.
00:02:02 --> 00:02:04 It's just a matter of how you're going to use
00:02:04 --> 00:02:08 it. And the feeling I got after I would write
00:02:08 --> 00:02:10 an incident that happened growing up, it was
00:02:10 --> 00:02:12 like the world was lifted off my shoulders and
00:02:12 --> 00:02:15 I became addicted to that feeling. The Jesuits
00:02:15 --> 00:02:18 will tell you, give me the boy from one to seven
00:02:18 --> 00:02:22 and I'll show you the man. Well, the one to seven
00:02:22 --> 00:02:25 for me was chaos, you know, that ended with the
00:02:25 --> 00:02:28 death of my very dear brother. If this is your
00:02:28 --> 00:02:31 first time tuning into the show, well, it's nice
00:02:31 --> 00:02:34 to have you with us. Kick your feet up. Please
00:02:34 --> 00:02:37 do stay a while. And if you've listened to the
00:02:37 --> 00:02:40 show before, it's good to have you back. I wanted
00:02:40 --> 00:02:42 to do a little house cleaning before we get into
00:02:42 --> 00:02:46 today's story. You can find more of us on the
00:02:46 --> 00:02:49 YouTube channel, as well as Reddit. That's another
00:02:49 --> 00:02:51 medium where you can connect with us. And of
00:02:51 --> 00:02:57 course, hometown, home base is at giantsamongstus
00:02:57 --> 00:03:05 .org. That's giantsamongstus .org. That's our
00:03:05 --> 00:03:09 website with a whole plethora of past stories,
00:03:09 --> 00:03:13 articles and blogs and... the few other ways
00:03:13 --> 00:03:15 you're able to join in on the conversation. You
00:03:15 --> 00:03:17 can leave a voice note and let us know where
00:03:17 --> 00:03:20 you're listening from, how you're listening to
00:03:20 --> 00:03:23 the show, how things are going on your side of
00:03:23 --> 00:03:26 the map. And you'll find all of those links in
00:03:26 --> 00:03:28 the show notes. So with that out of the way,
00:03:29 --> 00:03:33 let's get into it. Today, Rachel joins us and
00:03:33 --> 00:03:37 she's got a story to tell. One time people were
00:03:37 --> 00:03:41 driving down toward the goal. and I dove on the
00:03:41 --> 00:03:44 ball and I got kicked in the head. I don't really
00:03:44 --> 00:03:46 remember getting kicked in the head because apparently
00:03:46 --> 00:03:51 it knocked me out. I came to when the ambulance
00:03:51 --> 00:03:55 was there and they took me to the hospital. I
00:03:55 --> 00:04:00 had a concussion and they sent me home. But then
00:04:00 --> 00:04:03 a couple of weeks later, I'm in school and all
00:04:03 --> 00:04:06 of a sudden I can't feel anything from my waist
00:04:06 --> 00:04:08 down. In between periods, I was getting ready
00:04:08 --> 00:04:11 to walk to my next class and I can't feel my
00:04:11 --> 00:04:15 legs. The nurse called my mom, who was also a
00:04:15 --> 00:04:18 nurse, and she came and picked me up and she
00:04:18 --> 00:04:21 took me to a military, kind of like an urgent
00:04:21 --> 00:04:24 care. It was a bit for military. And they said,
00:04:25 --> 00:04:28 you've got to go over to Walter Reed Army Medical
00:04:28 --> 00:04:32 Center. I got checked in there and had to stay
00:04:32 --> 00:04:34 there for a week as I tried to figure out what
00:04:34 --> 00:04:37 was going on with me. So without further ado,
00:04:38 --> 00:04:40 ladies and gentlemen, this is Rachel and her
00:04:40 --> 00:04:45 story. Rachel, we had a nice conversation before
00:04:45 --> 00:04:49 we hit the record button. So it's great to hear
00:04:49 --> 00:04:53 more about your journey, your experiences, what
00:04:53 --> 00:04:57 made you into the woman that you are today. And
00:04:57 --> 00:05:00 first of all, one more time, I just like to say
00:05:00 --> 00:05:03 thank you very much for taking time out of your
00:05:03 --> 00:05:05 day because you could have been anywhere. You
00:05:05 --> 00:05:08 could have been doing anything, but you're here
00:05:08 --> 00:05:11 having to sit down and I appreciate that. So
00:05:11 --> 00:05:14 how are you doing? How's your day been so far?
00:05:14 --> 00:05:16 It's been well. I've had a great day. That's
00:05:16 --> 00:05:19 good to hear. That's good to hear. And you know,
00:05:19 --> 00:05:23 just to open it up right out the gate is The
00:05:23 --> 00:05:26 fact that you do have a memoir, you wrote a memoir
00:05:26 --> 00:05:29 and you were sharing with me beforehand before
00:05:29 --> 00:05:31 we started recording that this the whole point
00:05:31 --> 00:05:34 of it before was to share this with your two
00:05:34 --> 00:05:37 children who are now grown men now. And this
00:05:37 --> 00:05:41 details a lot, probably some of the meat and
00:05:41 --> 00:05:43 potatoes are what you'll be talking about today.
00:05:44 --> 00:05:48 And that I'm going to link the information for
00:05:48 --> 00:05:51 that in the show notes. So anybody who's listening
00:05:51 --> 00:05:56 and they feel compelled or gravitating towards
00:05:56 --> 00:05:59 reading this memoir that you've written. They'll
00:05:59 --> 00:06:02 have access to do that. So with that being said,
00:06:03 --> 00:06:06 Rachel, if you don't mind just opening up and
00:06:06 --> 00:06:08 just maybe sharing a little bit about some of
00:06:08 --> 00:06:12 your background or your childhood and how it
00:06:12 --> 00:06:16 was for you growing up. Absolutely. I am a military
00:06:16 --> 00:06:20 brat. I grew up, well I didn't grow up, but I
00:06:20 --> 00:06:24 was born in Texas and I lived there for six years.
00:06:24 --> 00:06:27 And then the military took my dad to New Jersey
00:06:27 --> 00:06:29 for just a short little stint. And then we went
00:06:29 --> 00:06:32 to Germany for three years. And then the final
00:06:32 --> 00:06:37 destination was Virginia. So throughout my journey,
00:06:37 --> 00:06:40 I'm a very social person, so everywhere we landed,
00:06:40 --> 00:06:43 I had to meet everybody on the blog, get to know
00:06:43 --> 00:06:48 everybody before the moving boxes were even put
00:06:48 --> 00:06:51 into our location. Was that, that wasn't hard
00:06:51 --> 00:06:54 for you to, like, to pick up and start over again
00:06:54 --> 00:06:56 and lose friends and then gain friends? That
00:06:56 --> 00:06:59 wasn't hard for you? No. it wasn't. In fact,
00:06:59 --> 00:07:02 my sister loved that she had a little sister
00:07:02 --> 00:07:04 who liked to go out and meet people because she
00:07:04 --> 00:07:06 would send me out there to meet everybody and
00:07:06 --> 00:07:10 then introduce her to people. She's five years
00:07:10 --> 00:07:12 older than me and she would just push me out
00:07:12 --> 00:07:15 there and say, Set forth go find everybody. Tell
00:07:15 --> 00:07:23 me how they are Recon mission Tomatoes you're
00:07:23 --> 00:07:26 the first one to get here, but if it's open arms,
00:07:26 --> 00:07:34 you also get that too Yes, so I I have always
00:07:34 --> 00:07:37 been the one to go out and meet everybody because
00:07:37 --> 00:07:40 I'd like to do that I'm definitely an extrovert
00:07:40 --> 00:07:44 so The final landing spot for us was in Virginia.
00:07:45 --> 00:07:50 So I got to actually spend time in elementary
00:07:50 --> 00:07:53 school, middle school, and graduate from high
00:07:53 --> 00:07:56 school all in the same area. Even though my dad
00:07:56 --> 00:07:58 was still in the military, we lucked out that
00:07:58 --> 00:08:01 way. So the friends that I had in elementary
00:08:01 --> 00:08:04 school from fourth grade till I graduated high
00:08:04 --> 00:08:09 school, we were always together. It was pretty
00:08:09 --> 00:08:12 awesome. Yeah. And, um, yeah, would I, would
00:08:12 --> 00:08:17 I remember, um, just going and retracking the
00:08:17 --> 00:08:20 backstory that you shared with me to, to kind
00:08:20 --> 00:08:23 of give me, you know, just to get me up to speed
00:08:23 --> 00:08:25 of, of some of the things that you, you dealt
00:08:25 --> 00:08:27 with early on or some of the things that came
00:08:27 --> 00:08:31 to be. And that was a, that, that, I don't know,
00:08:31 --> 00:08:34 would you call it a freak accident? that happened
00:08:34 --> 00:08:36 to you while you were you were active and you
00:08:36 --> 00:08:39 were athletic as a as a child or was through
00:08:39 --> 00:08:42 your adolescent years and you played you were
00:08:42 --> 00:08:46 playing soccer and that when I read that I've
00:08:46 --> 00:08:52 heard about such things that come later on in
00:08:52 --> 00:08:54 years when something is in doubt with right when
00:08:54 --> 00:08:56 it should have been I don't know if can you talk
00:08:56 --> 00:08:59 a bit about what what transpired and what happened?
00:09:00 --> 00:09:02 It's kind of the title of the book too, right?
00:09:02 --> 00:09:05 It is, it is. From a kick in the head to a kick
00:09:05 --> 00:09:13 in the ass. Yes, so I have always played soccer.
00:09:13 --> 00:09:15 When I got into high school, I played field hockey.
00:09:16 --> 00:09:20 I did all kinds of sports. But when I was playing
00:09:20 --> 00:09:25 soccer in high school, I decided to play goalie.
00:09:25 --> 00:09:28 I tried wanted to try to play goalie and my coach
00:09:28 --> 00:09:30 had said great, you know get in there and I thought
00:09:30 --> 00:09:34 I was pretty decent at it and One time people
00:09:34 --> 00:09:39 were driving down toward the goal and I dove
00:09:39 --> 00:09:41 on the ball and I got kicked in the head I don't
00:09:41 --> 00:09:43 really remember getting kicked in the head because
00:09:43 --> 00:09:48 apparently it knocked me out and I came to when
00:09:48 --> 00:09:53 the the ambulance was there And they took me
00:09:53 --> 00:09:57 to the hospital. I had a concussion and they
00:09:57 --> 00:10:00 sent me home. How old were you? Well, I was 17.
00:10:01 --> 00:10:04 Okay. Anything about that was concussions. You
00:10:04 --> 00:10:06 always hear now about concussions, football players,
00:10:07 --> 00:10:08 all of that kind of stuff. There's a protocol
00:10:08 --> 00:10:13 back then. It was just dust yourself. Drink some
00:10:13 --> 00:10:19 water, dust yourself out, sleep. Now they tell
00:10:19 --> 00:10:22 you when you sleep, make sure somebody's watching
00:10:22 --> 00:10:24 you, but then they're just like, ah, get some
00:10:24 --> 00:10:28 sleep and you're free to go. So that's what happened.
00:10:29 --> 00:10:32 I went about playing the sport, but then a couple
00:10:32 --> 00:10:37 of weeks later, I'm in school and all of a sudden
00:10:37 --> 00:10:40 I can't feel anything from my waist down. It
00:10:40 --> 00:10:43 just happened. In between periods, I was getting
00:10:43 --> 00:10:46 ready to walk to my next class and I can't feel
00:10:46 --> 00:10:49 my legs. And all of a sudden, there's nobody
00:10:49 --> 00:10:51 in the hallway. Everybody else has made it to
00:10:51 --> 00:10:54 class. And I had to get upstairs, and I didn't
00:10:54 --> 00:10:58 know how to do it. My legs just wouldn't work.
00:10:58 --> 00:11:01 And fortunately, a teacher or somebody, I don't
00:11:01 --> 00:11:04 even remember, because when you're in that much
00:11:04 --> 00:11:07 stress trying to figure out what's going on,
00:11:08 --> 00:11:10 somebody came and collected me up and took me
00:11:10 --> 00:11:14 to the nurse's office. And the nurse called my
00:11:14 --> 00:11:17 mom, who is also a nurse. and she came and picked
00:11:17 --> 00:11:20 me up and she took me to a military, kind of
00:11:20 --> 00:11:23 like an urgent care. It was a bit for military.
00:11:24 --> 00:11:27 And they said, you've got to go over to Walter
00:11:27 --> 00:11:30 Reed Army Medical Center. So they took me to
00:11:30 --> 00:11:35 Army Medical, Walter Reed. And I got checked
00:11:35 --> 00:11:38 in there and had to stay there for a week as
00:11:38 --> 00:11:40 they tried to figure out what was going on with
00:11:40 --> 00:11:44 me. In having my mom as a nurse, one would think
00:11:44 --> 00:11:47 that she's the ideal candidate to be there with
00:11:47 --> 00:11:52 you until she heard whispers of possible brain
00:11:52 --> 00:11:57 tumor. So she just about passed out. They had
00:11:57 --> 00:11:59 to put her into a bed while they took me off
00:11:59 --> 00:12:04 to run tests. Wow. It hits differently when it's
00:12:04 --> 00:12:07 your own daughter that's being diagnosed with
00:12:07 --> 00:12:10 something like that, right? Absolutely. As soon
00:12:10 --> 00:12:14 as she heard brain tumor, she... I mean, she
00:12:14 --> 00:12:17 turned white. I was just standing there like,
00:12:17 --> 00:12:22 brain tumor. I don't know. I'm 17. It's not gonna
00:12:22 --> 00:12:25 be a big deal. Not that serious. Yeah, you don't
00:12:25 --> 00:12:28 think it's that serious. Right. Invincible, you
00:12:28 --> 00:12:32 feel sometimes. Not sometimes, but you do feel
00:12:32 --> 00:12:35 invincible. That is exactly. You do. Nothing
00:12:35 --> 00:12:38 bad is gonna happen to me. It's gonna be fine.
00:12:39 --> 00:12:43 Mom, when you wake up, I'll be back. I don't
00:12:43 --> 00:12:47 want to jump too far back, but I'm just curious,
00:12:48 --> 00:12:51 hindsight, do you think that there was something
00:12:51 --> 00:12:55 that could have been done to prevent it from
00:12:55 --> 00:12:59 escalating, like say had you went to go to a
00:12:59 --> 00:13:02 doctor and seen immediately after you had the
00:13:02 --> 00:13:07 concussion, or it was inevitable? I truly think
00:13:07 --> 00:13:12 it was inevitable. And the reason I say that
00:13:12 --> 00:13:14 is because I've done some research on multiple
00:13:14 --> 00:13:17 sclerosis and I've talked to some neurologists
00:13:17 --> 00:13:21 and they say that they believe that a traumatic
00:13:21 --> 00:13:27 event will actually be the gateway to letting
00:13:27 --> 00:13:31 multiple sclerosis run rampant. I mean, I don't
00:13:31 --> 00:13:34 want to say it in those simple terms, but they
00:13:34 --> 00:13:39 do think that some kind of traumatic event that
00:13:39 --> 00:13:44 lights the ms fire and i don't know if they mean
00:13:44 --> 00:13:48 that it lays low in everybody i doubt that but
00:13:48 --> 00:13:51 anybody that is predispositioned to it i think
00:13:51 --> 00:13:55 because i'm pretty sure there are a lot of people
00:13:55 --> 00:13:59 out there that probably have ms but they write
00:13:59 --> 00:14:03 things off like your fingers go numb so all right
00:14:03 --> 00:14:07 maybe i was sleeping on it wrong you know i I
00:14:07 --> 00:14:11 did something to a nerve or you wake up in the
00:14:11 --> 00:14:14 morning and your legs feel kind of out of line,
00:14:14 --> 00:14:17 but then it gets back to normal. So you never
00:14:17 --> 00:14:21 go get that checked. You never go and get an
00:14:21 --> 00:14:24 MRI or any of the numerous scans that they can
00:14:24 --> 00:14:28 do on any of us and find anything. I tend to
00:14:28 --> 00:14:34 think that science and medical knowledge is maybe
00:14:34 --> 00:14:37 sometimes not a great thing. because now people
00:14:37 --> 00:14:39 are getting labeled and they may never have another
00:14:39 --> 00:14:43 event but they see they have to go through a
00:14:43 --> 00:14:46 spinal tap or they have to get an MRI and they
00:14:46 --> 00:14:50 see I used to call it UBO was considered an unidentified
00:14:50 --> 00:14:53 bright object, but now they call them plaques.
00:14:54 --> 00:14:57 There's a name and a label for everything, isn't
00:14:57 --> 00:15:01 it? And then if you have like you have the ability
00:15:01 --> 00:15:05 now to self diagnose yourself with everything
00:15:05 --> 00:15:09 in the book. My wife also is a was a nurse for
00:15:09 --> 00:15:12 over 20 years. And she said that when they were
00:15:12 --> 00:15:16 in when they're learning. um all of the the medical
00:15:16 --> 00:15:19 conditions and the symptoms and they said that
00:15:19 --> 00:15:22 it was normal for the professors to say after
00:15:22 --> 00:15:26 this you're going to start seeing sicknesses
00:15:26 --> 00:15:28 and illnesses maybe in yourself or people around
00:15:28 --> 00:15:31 that isn't necessarily true but it's because
00:15:31 --> 00:15:35 this it's it's like now you're you're uh where
00:15:35 --> 00:15:37 your attention is being focused on you're gonna
00:15:37 --> 00:15:40 find what you're looking for one way or the other
00:15:41 --> 00:15:44 Absolutely. Absolutely. Because in college I
00:15:44 --> 00:15:47 took a class. I wanted to be a nurse because
00:15:47 --> 00:15:50 both my parents are. My dad, he was a nurse in
00:15:50 --> 00:15:53 the military and my mom was a nurse. So I thought,
00:15:53 --> 00:15:55 oh, I want to do that. But I agree with your
00:15:55 --> 00:15:57 wife. All of a sudden you come down with every
00:15:57 --> 00:16:01 condition known to man because you just... we're
00:16:01 --> 00:16:04 taught about it. Yeah, you can pretty much if
00:16:04 --> 00:16:07 you read, I'm not to discredit any of it, but
00:16:07 --> 00:16:09 if you read, you can go and pick an illness and
00:16:09 --> 00:16:13 like if it was for the multiple sclerosis and
00:16:13 --> 00:16:16 then you might see all of the symptoms. And I
00:16:16 --> 00:16:18 think all of us could probably check off maybe
00:16:18 --> 00:16:21 five or six of them and say, oh, you know what?
00:16:21 --> 00:16:24 I think I might not to discredit. I'm sure it
00:16:24 --> 00:16:26 does have a place, but there is a fine line,
00:16:26 --> 00:16:29 like you just said, where we also lose some of
00:16:29 --> 00:16:31 our own judgment and maybe just getting in touch
00:16:31 --> 00:16:35 with our own bodies, intelligence and, you know,
00:16:35 --> 00:16:37 listening to ourselves also rather than just
00:16:37 --> 00:16:41 going off of what the professional is saying
00:16:41 --> 00:16:45 or the book is saying. Yes. But again, I truly
00:16:45 --> 00:16:48 believe that if we were to go grab a thousand
00:16:48 --> 00:16:52 people off the streets and have them get an MRI
00:16:52 --> 00:16:57 or a CT scan or any number of scans, we're going
00:16:57 --> 00:17:01 to find something wrong with them. You go looking
00:17:01 --> 00:17:03 for something, you're going to find something.
00:17:03 --> 00:17:07 A hundred percent, yeah. So I kind of like to
00:17:07 --> 00:17:13 think if you don't have anything that is majorly
00:17:13 --> 00:17:15 wrong with you right now. Why are you going to
00:17:15 --> 00:17:18 open up that box? Just wait a minute. And I know,
00:17:18 --> 00:17:20 I know, I know there are professionals out there
00:17:20 --> 00:17:24 that would say different. Oh, we can stop it
00:17:24 --> 00:17:27 early and all that. But then as we were talking
00:17:27 --> 00:17:31 prior to the show, you can get yourself into
00:17:31 --> 00:17:36 a bad place because you'll think, oh, well, I
00:17:36 --> 00:17:40 have a brain tumor. Oh, I have MS. I have cancer.
00:17:41 --> 00:17:44 I better go get it checked. Don't do that. Don't
00:17:44 --> 00:17:48 do that. Because that bad place might not have
00:17:48 --> 00:17:50 to come around. You know what I mean? Yeah, I
00:17:50 --> 00:17:52 know exactly what you mean. Don't go fishing
00:17:52 --> 00:17:57 for stuff. Enjoy your life. Right. Yeah. No,
00:17:57 --> 00:18:02 that's a very, very good point. And yeah, we
00:18:02 --> 00:18:06 can get fixated on all the negativity, whether
00:18:06 --> 00:18:10 it's things that are outside our outside our
00:18:10 --> 00:18:12 window that's happening that we have no control
00:18:12 --> 00:18:16 about or things that are going on that we think
00:18:16 --> 00:18:19 that are going on within our own lives. And that
00:18:19 --> 00:18:22 pretty much just always takes us away from the
00:18:22 --> 00:18:25 moment, from the present time to just enjoy life
00:18:25 --> 00:18:29 and do things that we feel are going to be beneficial
00:18:29 --> 00:18:33 for ourselves and then even for those around
00:18:33 --> 00:18:37 us that we love. And to get back to when you
00:18:37 --> 00:18:40 said that Your mother heard the diagnosis of
00:18:40 --> 00:18:43 it being brain tumor, and then you were hearing
00:18:43 --> 00:18:47 this also and saying, well, you know, it's going
00:18:47 --> 00:18:50 to be all right. What was the final take on that?
00:18:50 --> 00:18:52 What did they say was actually wrong with you
00:18:52 --> 00:18:56 or that you were dealing with? So they took me
00:18:56 --> 00:19:00 to get an MRI, which was an adventure in and
00:19:00 --> 00:19:05 of itself because MRIs nobody knew. really what
00:19:05 --> 00:19:10 an MRI was going to do to the hospital to, I
00:19:10 --> 00:19:14 guess. people even so they would take you out
00:19:14 --> 00:19:17 into this little trailer and You would get your
00:19:17 --> 00:19:21 MRI done out there and they didn't give you headphones
00:19:21 --> 00:19:25 Why you were like a test dummy then? Round for
00:19:25 --> 00:19:28 a while longer than that, but okay. That's not
00:19:28 --> 00:19:31 like it is today where they make you nice and
00:19:31 --> 00:19:34 cozy They're like, okay, let us give you headphones.
00:19:34 --> 00:19:37 What kind of music you want to listen to? Yeah
00:19:37 --> 00:19:40 you just got to hear all the thumping and it
00:19:40 --> 00:19:45 was loud and but I didn't mind it I think I even
00:19:45 --> 00:19:49 fell asleep in there to be quite honest because
00:19:49 --> 00:19:53 again I'm 17 years old I'm just going through
00:19:53 --> 00:19:55 what they're telling me to do as long as they
00:19:55 --> 00:19:59 can get my legs working again it's gonna be great
00:19:59 --> 00:20:06 so after the MRI they said that I had UBOs which
00:20:06 --> 00:20:08 are at the time they called them UBOs, which
00:20:08 --> 00:20:11 was unidentified bright objects. Now it's called
00:20:11 --> 00:20:14 plaques. They had some other term in between
00:20:14 --> 00:20:18 plaques and UBOs. They just keep changing the
00:20:18 --> 00:20:22 terminology, but they're these little plaques
00:20:22 --> 00:20:25 in your brain and in your spine. And they said
00:20:25 --> 00:20:29 that that's indicative of MS. We have to do a
00:20:29 --> 00:20:34 spinal tap next. Yay. Now that was something
00:20:34 --> 00:20:38 that no, nobody really wants to get one of those.
00:20:38 --> 00:20:40 And especially - And still when you're hearing
00:20:40 --> 00:20:43 this at 17 years old, you're hearing a spinal
00:20:43 --> 00:20:45 tap. Are you still thinking like, this isn't
00:20:45 --> 00:20:47 really a big deal. It's just gonna be a poke
00:20:47 --> 00:20:50 in the back or how are you feeling now? Well,
00:20:50 --> 00:20:53 when they told me that you weren't allowed to
00:20:53 --> 00:20:56 move, and again, thank goodness my dad was the
00:20:56 --> 00:20:59 assistant chief of the Army Nurse Corps. So he
00:20:59 --> 00:21:03 was there with me. And he was in the room holding
00:21:03 --> 00:21:06 my hand as I'm getting the spinal tap or lumbar
00:21:06 --> 00:21:09 puncture, whatever you want to call it. And I
00:21:09 --> 00:21:13 was warned, do not move. You don't want to get
00:21:13 --> 00:21:17 paralyzed. Okay. At 17, those were paralyzed.
00:21:18 --> 00:21:20 Yeah. That kind of freaks you out a little bit.
00:21:21 --> 00:21:26 That's more serious. It drips so slow, your spinal
00:21:26 --> 00:21:29 fluid drips so slow coming out there that it
00:21:29 --> 00:21:32 felt like I was laying there or you have to get
00:21:32 --> 00:21:35 into a fetal position. It felt like I was there
00:21:35 --> 00:21:40 for days. Oh, and then when it's done, this is
00:21:40 --> 00:21:43 even a bigger joy. You have to go and lay down
00:21:43 --> 00:21:45 and not move because of the fear of a spinal
00:21:45 --> 00:21:48 headache. And from what I understand, those are
00:21:48 --> 00:21:52 horrific. Again, I am a rule follower. So they
00:21:52 --> 00:21:55 told me just lay down, don't move around a lot.
00:21:56 --> 00:21:59 That's exactly what I did. And then that came
00:21:59 --> 00:22:02 back that I believe it was called some kind of
00:22:02 --> 00:22:05 antigens in the serum. I don't know. But they
00:22:05 --> 00:22:08 said that that is definitely indicative of MS.
00:22:09 --> 00:22:14 Okay, so Those were good times, but I didn't
00:22:14 --> 00:22:16 get to leave the hospital for a week because
00:22:16 --> 00:22:19 they put me on a five -day IV steroid treatment
00:22:19 --> 00:22:24 which actually was great because I could feel
00:22:24 --> 00:22:27 the feeling coming back in my legs and by the
00:22:27 --> 00:22:30 fifth day I was up able to walk around so that
00:22:30 --> 00:22:33 whole time up until you had you received the
00:22:33 --> 00:22:36 IV you had no pretty much no feeling on the bottom
00:22:36 --> 00:22:40 half No feeling they would ask me to walk And
00:22:40 --> 00:22:43 when you can't feel your legs or your feet, your
00:22:43 --> 00:22:46 foot will hit and you're still standing. But
00:22:46 --> 00:22:48 then your next one is trying to move and then
00:22:48 --> 00:22:52 you kind of flop to the ground. So a few days
00:22:52 --> 00:22:55 of that. I mean, are you feeling like my I really
00:22:55 --> 00:22:57 hope that things get back to normal because it's
00:22:57 --> 00:22:59 kind of scary now. It's not just an overnight
00:22:59 --> 00:23:03 thing. Yes, it was very scary. And when they
00:23:03 --> 00:23:07 were saying multiple sclerosis, we actually knew.
00:23:07 --> 00:23:11 somebody, one person, I knew one person and she
00:23:11 --> 00:23:14 had it bad. She couldn't walk, she couldn't get
00:23:14 --> 00:23:16 around, she was miserable. The most miserable
00:23:16 --> 00:23:20 person I think I've met. Can you, because I'm
00:23:20 --> 00:23:23 pretty sure everybody that is going to listen
00:23:23 --> 00:23:25 to this and even myself, you've heard of multiple
00:23:25 --> 00:23:28 sclerosis, but what exactly is it? Are you able
00:23:28 --> 00:23:32 to just kind of break that down or for somebody
00:23:32 --> 00:23:36 who's not too... Can you give me your medical
00:23:36 --> 00:23:40 definition of what a multiple... You're probably
00:23:40 --> 00:23:43 like, I didn't say I was a doctor. Exactly. I
00:23:43 --> 00:23:47 was 17 years old. But I mean, are there certain
00:23:47 --> 00:23:50 challenges that come with it or certain symptoms
00:23:50 --> 00:23:52 that are pretty much across the board with someone
00:23:52 --> 00:23:55 who's dealing with multiple sclerosis? You said
00:23:55 --> 00:23:57 the numbing of the hands or numbing of the fingers
00:23:57 --> 00:24:00 and no MS patient is the same because what it
00:24:00 --> 00:24:04 is, your body attacks itself. So it attacks.
00:24:04 --> 00:24:07 It's my the myelin sheath, which is runs down
00:24:07 --> 00:24:11 your spine. It protects your. OK, so now I'm
00:24:11 --> 00:24:13 getting into something. I'm not a doctor, so
00:24:13 --> 00:24:19 I can't tell you exactly. I was pretty convincing.
00:24:20 --> 00:24:24 And it kind of want to think of it as. electric
00:24:24 --> 00:24:27 wires when you have the coagulated stuff that
00:24:27 --> 00:24:30 goes around the the wires. You know what I'm
00:24:30 --> 00:24:33 talking like they're ready. Okay, got you. Yeah,
00:24:34 --> 00:24:37 that's how I think of the myelin sheath when
00:24:37 --> 00:24:41 it's wrapped around your nerves. Yeah, that's
00:24:41 --> 00:24:44 like the protection coil. Correct. That's how
00:24:44 --> 00:24:47 Again, a doctor might come on here and say you
00:24:47 --> 00:24:49 were absolutely wrong, but that's how I was,
00:24:49 --> 00:24:51 how somebody, a neurologist had described it
00:24:51 --> 00:24:54 to me. So, and then this is something that it's
00:24:54 --> 00:24:56 a condition that does, you can't reverse it,
00:24:56 --> 00:24:58 right? You just have to, you learn to live with
00:24:58 --> 00:25:04 it. Not yet. Not yet. I truly believe that hopefully
00:25:04 --> 00:25:08 in my lifetime, they are working on things to
00:25:08 --> 00:25:13 maybe slow it down or re. Well, slow it down.
00:25:14 --> 00:25:17 Absolutely. There are things that help slow it
00:25:17 --> 00:25:20 down. The medications, they're called DMTs, which
00:25:20 --> 00:25:23 are disease modifying treatments. So those have
00:25:23 --> 00:25:26 slowed them down. But I do think they will be
00:25:26 --> 00:25:30 able to regenerate the myelin sheath. I do think
00:25:30 --> 00:25:32 that. I've actually seen some studies and stuff.
00:25:33 --> 00:25:37 So it depends on how bad your MS is, how much
00:25:37 --> 00:25:41 it can actually recover and help it. for the
00:25:41 --> 00:25:45 young people and even the people that don't have
00:25:45 --> 00:25:47 an aggressive form of multiple sclerosis, I think
00:25:47 --> 00:25:50 would be able to benefit greatly from that. So
00:25:50 --> 00:25:55 fingers crossed that that stuff can happen sooner.
00:25:55 --> 00:26:00 Yeah, absolutely. And yours, your condition,
00:26:00 --> 00:26:02 was it an aggressive one? Did it progress over
00:26:02 --> 00:26:05 time? Oh, it did progress over time. In fact,
00:26:06 --> 00:26:10 From the time I was 17 until after I had my second
00:26:10 --> 00:26:15 child, I wasn't on any DMT because it was on
00:26:15 --> 00:26:20 a lottery system when I was 17. So they opted
00:26:20 --> 00:26:24 to actually diagnose me with transverse myelitis,
00:26:24 --> 00:26:27 which is also some kind of infection in the spinal
00:26:27 --> 00:26:30 cord or spinal sheath. I don't really remember
00:26:30 --> 00:26:34 I was 17. Remember I was invincible. None of
00:26:34 --> 00:26:39 that mattered. Wonder Woman. Yes. So they didn't
00:26:39 --> 00:26:43 have DMTs at that time. It was on a lottery system
00:26:43 --> 00:26:45 and there was no way I was going to be the lucky
00:26:45 --> 00:26:48 winner of that one. So they diagnosed me with
00:26:48 --> 00:26:52 transverse myelitis because they knew at the
00:26:52 --> 00:26:54 age of 17 eventually I'm going to get off of
00:26:54 --> 00:26:57 my parents insurance and if I'm labeled multiple
00:26:57 --> 00:27:02 sclerosis, good luck getting insurance. So, yeah,
00:27:03 --> 00:27:06 so they did right by me. They absolutely said,
00:27:07 --> 00:27:10 we're not going to label you. Fast forward to
00:27:10 --> 00:27:16 after my second son was born, I got optic neuritis,
00:27:16 --> 00:27:19 which is I guess the inflammation of the optic
00:27:19 --> 00:27:23 nerve. And so I would get gray, darker vision.
00:27:23 --> 00:27:27 So I went into an ophthalmologist and He said
00:27:27 --> 00:27:29 okay. Well, they didn't say okay. I get a phone
00:27:29 --> 00:27:32 call from them saying you need to come in and
00:27:32 --> 00:27:36 I said Just tell me I have multiple sclerosis
00:27:36 --> 00:27:41 and they're like, how did you know I said? I've
00:27:41 --> 00:27:44 had this I know about it They're like you never
00:27:44 --> 00:27:47 had somebody just say I have multiple sclerosis
00:27:47 --> 00:27:51 and I said well, I guess I'm the first and so
00:27:51 --> 00:27:56 after that I got to be part of a trial for rebiff,
00:27:57 --> 00:28:01 which was is a disease modifying treatment. And
00:28:01 --> 00:28:03 from there, I just started getting different
00:28:03 --> 00:28:07 treatments. And I guess over time, it slowly
00:28:07 --> 00:28:12 progresses. You don't notice it until you realize
00:28:12 --> 00:28:16 you can't do certain things. I was walking great
00:28:16 --> 00:28:21 until probably about seven years ago. And when
00:28:21 --> 00:28:24 you think Oh boy, it would be nice to go out
00:28:24 --> 00:28:27 for a nice long walk. And you realize, geez,
00:28:27 --> 00:28:32 I can only go maybe a mile. And sometimes that
00:28:32 --> 00:28:35 mile you have to stop halfway through and take
00:28:35 --> 00:28:38 a break. My legs just aren't working as good
00:28:38 --> 00:28:40 as they were. All right, I'll sit down and take
00:28:40 --> 00:28:42 a little break. And then when you take your break,
00:28:43 --> 00:28:45 you start walking again, but you need to take
00:28:45 --> 00:28:48 another break because they're not as good as
00:28:48 --> 00:28:51 they were for the first half the walk. They just
00:28:51 --> 00:28:54 didn't regenerate as well. Then you realize,
00:28:54 --> 00:28:58 boy, I guess it is progressing a little bit,
00:28:58 --> 00:29:01 or maybe that's just the nature of the beast.
00:29:01 --> 00:29:05 I'm getting older. Yeah. Do you have like, say,
00:29:05 --> 00:29:08 if you go on it, if you want to just treat yourself
00:29:08 --> 00:29:10 and get out, put some fresh air on your face
00:29:10 --> 00:29:12 and go for a walk. Do you have anything with
00:29:12 --> 00:29:15 you just in case like a cane or a walking sticks
00:29:15 --> 00:29:17 or some Nordic sticks to help you? I used to
00:29:17 --> 00:29:21 do the Nordic sticks. So OK. Yes, I did like
00:29:21 --> 00:29:24 the Nordic sticks because you felt like all right
00:29:24 --> 00:29:26 These are just my walking aids and you do that
00:29:26 --> 00:29:29 anyway when you go for a long hike great, right?
00:29:29 --> 00:29:33 But now I would definitely if I'm going on a
00:29:33 --> 00:29:36 long walk I want somebody's arm so I can hold
00:29:36 --> 00:29:39 on to the arm or There's something called a roll
00:29:39 --> 00:29:44 later which is like a walker wheels on both the
00:29:44 --> 00:29:46 front and the back not like the walkers that
00:29:46 --> 00:29:50 you see and retirement home not those and I also
00:29:50 --> 00:29:56 have a trike that is it's an assisted pedal trike
00:29:56 --> 00:30:00 so I if I'm pedaling and then I've gone too far
00:30:00 --> 00:30:03 I can put it on assist and it'll go ahead and
00:30:03 --> 00:30:06 the motor will kick in and I can get back home.
00:30:07 --> 00:30:10 the beautiful, beautiful things that technology
00:30:10 --> 00:30:13 has done over the years to allow somebody who's
00:30:13 --> 00:30:16 dealing with certain things to be able to still
00:30:16 --> 00:30:19 enjoy themselves and do things that they normally
00:30:19 --> 00:30:21 probably wouldn't be able to do, or they'd have
00:30:21 --> 00:30:26 a hard time doing on account of their condition.
00:30:27 --> 00:30:30 Correct. Yes. Because once your legs stop, once
00:30:30 --> 00:30:33 they decide they're not working that day, and
00:30:33 --> 00:30:37 it can happen in the blink of an eye. okay there's
00:30:37 --> 00:30:39 no warning there's no warning it just happens
00:30:39 --> 00:30:42 you can be mid -step and they're like we're done
00:30:42 --> 00:30:47 oh why just collapse oh yes have you had that
00:30:47 --> 00:30:50 happen that's fun oh yeah it's a great time that's
00:30:50 --> 00:30:54 fun oh yeah because people look at you like they
00:30:54 --> 00:30:58 just they go on strike on a whim without working
00:30:58 --> 00:31:00 right now right and so they fall and they come
00:31:00 --> 00:31:02 running over to you and they're like oh are you
00:31:02 --> 00:31:06 okay and i'm like oh i'm fine and out laugh and
00:31:06 --> 00:31:08 then they look at me like what is wrong with
00:31:08 --> 00:31:11 you and i'm like look it's it's all good they
00:31:11 --> 00:31:14 just decide to stop working i'm fine i didn't
00:31:14 --> 00:31:17 get hurt i appreciate you guys helping me that
00:31:17 --> 00:31:18 I'm not going to ask him to pick me up and take
00:31:18 --> 00:31:22 me to a car. So I'll just say I'm going to sit
00:31:22 --> 00:31:24 here for a minute. I'll be OK. That's what you
00:31:24 --> 00:31:27 told me. You told me beforehand. You said like,
00:31:27 --> 00:31:29 yeah, I'm sure a lot of people think that I'm
00:31:29 --> 00:31:31 drunk or I'm under the influence. But you're
00:31:31 --> 00:31:35 joking about it and smiling and being real lighthearted
00:31:35 --> 00:31:39 about it. Did you did you always have that that
00:31:39 --> 00:31:41 type of outlook and accepting it in that way?
00:31:41 --> 00:31:44 Or was there a time where you were feeling like
00:31:44 --> 00:31:47 Why did I get this shake? I'm getting a bad shake
00:31:47 --> 00:31:50 right now. It's one thing after the other. I
00:31:50 --> 00:31:53 think I was lucky. Take that with a grain of
00:31:53 --> 00:31:56 salt. But I think I was lucky that I got it when
00:31:56 --> 00:32:01 I was 17 years old because I'm invincible. It
00:32:01 --> 00:32:05 wasn't going to affect me. In fact, so I was
00:32:05 --> 00:32:09 a junior going into senior going to be a senior
00:32:09 --> 00:32:12 the next year. I went off to play soccer in college.
00:32:12 --> 00:32:16 Only play you were still active. Yes. Oh, oh,
00:32:16 --> 00:32:20 yes Wow, okay about that, but I only played for
00:32:20 --> 00:32:23 a year because then I found a sorority and well
00:32:23 --> 00:32:30 there was no time playing soccer Priorities,
00:32:30 --> 00:32:33 we have our priorities. Priorities changed. So,
00:32:33 --> 00:32:34 well, there might have been a little drunkness
00:32:34 --> 00:32:38 there, so. Yeah, yeah, chug, chug, chug, chug,
00:32:38 --> 00:32:41 chug. That's right. So maybe that's like the
00:32:41 --> 00:32:46 21st of now. Because I didn't have, in college,
00:32:46 --> 00:32:50 nobody knew I had MS. If I was having a bad day.
00:32:50 --> 00:32:53 Oh, this was your best kept secret then. It was
00:32:53 --> 00:32:56 the best kept secret until I think I let people
00:32:56 --> 00:33:00 know that didn't already know maybe about seven
00:33:00 --> 00:33:02 years ago. And now everybody knows now that I
00:33:02 --> 00:33:05 have the book out. In fact, some of my sorority
00:33:05 --> 00:33:08 sisters are like, you had MS this whole time?
00:33:09 --> 00:33:12 And I said, yes. Why would I go ahead and tell
00:33:12 --> 00:33:16 you guys about that? We were in college. We were
00:33:16 --> 00:33:21 there for a reason. And it wasn't just to party,
00:33:21 --> 00:33:24 but to also get an education. That's what I was
00:33:24 --> 00:33:27 thinking there for a reason. Was it to party?
00:33:28 --> 00:33:32 To get an education? This is the higher learning,
00:33:32 --> 00:33:37 ladies. That's right. Yeah. So I said, well,
00:33:37 --> 00:33:40 why in the world would I ever say anything to
00:33:40 --> 00:33:42 you guys about that? Was it because you I mean,
00:33:42 --> 00:33:45 I'm just I'm just curious. Did you not want to
00:33:45 --> 00:33:47 have that pity? And just wanted to be looked
00:33:47 --> 00:33:51 at as dumb. There's nothing wrong with me. I
00:33:51 --> 00:33:56 dislike pity to all ends. I don't want people
00:33:56 --> 00:34:01 to pity me. And, you know, I maybe I'm sure there
00:34:01 --> 00:34:05 are people that have chronic illnesses that do
00:34:05 --> 00:34:09 well when people maybe pity isn't the word that
00:34:09 --> 00:34:14 people want to help them. But to me, I want to
00:34:14 --> 00:34:18 help myself first. I don't want somebody to want
00:34:18 --> 00:34:21 to help me out of pity. I guess that's where
00:34:21 --> 00:34:24 it comes back to the pity because I think that
00:34:24 --> 00:34:27 they look at me different and they feel sorry
00:34:27 --> 00:34:31 for me, which to me is pity. And then they want
00:34:31 --> 00:34:35 to help me instead of letting me ask, would you
00:34:35 --> 00:34:38 mind helping me? Because then that's not pity.
00:34:39 --> 00:34:42 It's, would you like to help me? And if they
00:34:42 --> 00:34:45 don't, fine. Okay, just say no and that's okay
00:34:45 --> 00:34:48 because then I'll figure it out. I've never had
00:34:48 --> 00:34:50 somebody say no, but I want to give them the
00:34:50 --> 00:34:53 option. Yeah, sympathetic or however you want
00:34:53 --> 00:34:55 to put it. You feel like you're helping them
00:34:55 --> 00:34:59 out. But then sometimes you can get in the way
00:34:59 --> 00:35:02 of cheating them to be able to, like you said,
00:35:02 --> 00:35:04 to help themselves and then once again, develop
00:35:04 --> 00:35:07 some type of some type of confidence in their
00:35:07 --> 00:35:10 abilities and not just have everybody do everything
00:35:10 --> 00:35:12 for them, because then it's like you're just
00:35:12 --> 00:35:15 you're not evolving, but you're. you're devolving,
00:35:15 --> 00:35:17 you're going back and now you're being babied
00:35:17 --> 00:35:19 and you're being pampered and now you can't do
00:35:19 --> 00:35:22 anything for yourself. There is going to be some
00:35:22 --> 00:35:23 things that you're going to need help on, like
00:35:23 --> 00:35:26 you said, but also like to be able to say, no,
00:35:26 --> 00:35:28 I got this. Let me learn it. Let me figure it
00:35:28 --> 00:35:31 out. And I'll be better for that later on. Yes.
00:35:31 --> 00:35:34 In fact, I know sometimes I get a little snarky
00:35:34 --> 00:35:38 when somebody sees me trying to get up and walk
00:35:38 --> 00:35:40 somewhere and they're like, here, let me help
00:35:40 --> 00:35:44 you. And I'm like, no, I can do this. Then I
00:35:44 --> 00:35:48 feel like they're hovering around me and I appreciate
00:35:48 --> 00:35:50 because I know they don't want me to follow hurt
00:35:50 --> 00:35:53 myself They mean well. Yeah, they mean well it
00:35:53 --> 00:35:58 but sometimes I get a little Irritated because
00:35:58 --> 00:36:01 if I'm in a familiar surrounding I know Where
00:36:01 --> 00:36:04 I'm going what I'm doing I have things that if
00:36:04 --> 00:36:06 I have to grab a hold of if I feel like I'm gonna
00:36:06 --> 00:36:09 go down I know You don't have to hover around
00:36:09 --> 00:36:13 me and I feel bad. I feel bad about saying this
00:36:13 --> 00:36:16 now because I don't want somebody to hear this
00:36:16 --> 00:36:20 and think that I'm ungrateful. It's like a tricky
00:36:20 --> 00:36:22 dance because there's some people like say for
00:36:22 --> 00:36:25 instance that are that are meaning well and they
00:36:25 --> 00:36:27 want to help out and this might be the first
00:36:27 --> 00:36:29 time that they've encountered just someone who
00:36:29 --> 00:36:32 needs that type of assistance never mind what
00:36:32 --> 00:36:34 their condition is but just someone that they
00:36:34 --> 00:36:36 see oh they they need a little bit of help let
00:36:36 --> 00:36:39 me help them. But on your end, you've been through
00:36:39 --> 00:36:42 this plenty of times and you have people that
00:36:42 --> 00:36:45 sometimes always just assert themselves into
00:36:45 --> 00:36:48 the situation. And then so you're seeing the
00:36:48 --> 00:36:50 overall how many times it's happened. And this
00:36:50 --> 00:36:52 person has seen that one time that I can help
00:36:52 --> 00:36:57 out. And it's like, you know, a contrast in interest
00:36:57 --> 00:36:59 right there. He means well, but you're getting
00:36:59 --> 00:37:02 tired of I've already had eight people today
00:37:02 --> 00:37:06 trying to do this. Just let me go. Yeah, let
00:37:06 --> 00:37:11 me be And and going back to just the fact that
00:37:11 --> 00:37:15 you like you're able to joke about it laugh about
00:37:15 --> 00:37:19 it not take it too serious and and we did mention
00:37:19 --> 00:37:21 some of this beforehand and it was the fact that
00:37:21 --> 00:37:24 we're not downplaying any of it to where you
00:37:24 --> 00:37:26 you had you had a good point and you brought
00:37:26 --> 00:37:33 up that there to to allow people to have That
00:37:33 --> 00:37:35 pity party, sometimes you need that. You have
00:37:35 --> 00:37:38 to let out this frustration, this anger, this
00:37:38 --> 00:37:41 tension. But then there comes a time where you
00:37:41 --> 00:37:44 have to make a decision if you want to stay there
00:37:44 --> 00:37:46 or you want to bring yourself out of it and start
00:37:46 --> 00:37:48 to do something about it. And that's a place
00:37:48 --> 00:37:51 that some people it's one way or the other. And
00:37:51 --> 00:37:53 you have to make that choice and you're going
00:37:53 --> 00:37:56 to live with that choice. Exactly. You can either
00:37:56 --> 00:38:00 decide to. pick up your, well, I was going to
00:38:00 --> 00:38:03 say pick up your big girl pants, but it's also
00:38:03 --> 00:38:09 big boy pants and move forward and learn to live
00:38:09 --> 00:38:12 with it. You don't have to be happy about it,
00:38:12 --> 00:38:17 but this is the hand that you were dealt. So
00:38:17 --> 00:38:20 start playing the cards, get them out there,
00:38:20 --> 00:38:24 play the cards. And I also have run into some
00:38:24 --> 00:38:27 people that really need to make sure that they
00:38:27 --> 00:38:32 Talk to somebody go see a therapist Because I'm
00:38:32 --> 00:38:35 learning that there are a lot of people that
00:38:35 --> 00:38:40 as soon as they hear MS They are just they'll
00:38:40 --> 00:38:43 say I am so young I have this am I gonna live
00:38:43 --> 00:38:48 to? Get married I have never and now there is
00:38:48 --> 00:38:51 argument about this too, but I have never ever
00:38:51 --> 00:38:58 heard of somebody dying from MS I've never ever
00:38:58 --> 00:39:03 heard about an autopsy report that comes back
00:39:03 --> 00:39:07 that MS was the cause of death. You die with
00:39:07 --> 00:39:12 MS, you can get hit by a car, and you died with
00:39:12 --> 00:39:17 MS, but that wasn't the actual cause of death.
00:39:18 --> 00:39:22 Just like you can die of pneumonia, you can die
00:39:22 --> 00:39:25 of a heart attack. and happen to have MS, maybe
00:39:25 --> 00:39:30 MS weakened the stuff and was a gateway to it,
00:39:30 --> 00:39:34 but I have never heard of MS as a cause of death,
00:39:35 --> 00:39:40 a medical cause of death. Maybe, have you ever
00:39:40 --> 00:39:44 heard of that? No, I can't say I have, no. And
00:39:44 --> 00:39:48 so people are worried that MS is gonna be what
00:39:48 --> 00:39:52 is written on the autopsy report. death caused
00:39:52 --> 00:39:58 by MS. You die with MS. Or maybe the other fear
00:39:58 --> 00:40:01 is that it's really going to cripple them and
00:40:01 --> 00:40:03 they're not going to be able to do the things
00:40:03 --> 00:40:06 that they once enjoyed doing. But it seems that
00:40:06 --> 00:40:09 you've... You have your challenges and there's
00:40:09 --> 00:40:11 times when your legs just give out. But I mean,
00:40:11 --> 00:40:14 I'm it's it's safe to say that you're still you're
00:40:14 --> 00:40:16 still doing things that you've you've always
00:40:16 --> 00:40:18 enjoyed. You might not be playing soccer anymore,
00:40:18 --> 00:40:21 but I mean, anymore. I can't play. So I can't
00:40:21 --> 00:40:25 go for. So are you you're legally blind. So in
00:40:25 --> 00:40:28 order to be legally blind, you know, how does
00:40:28 --> 00:40:31 that light at all from that eye? I can see light
00:40:31 --> 00:40:35 from that eye and I have peripheral vision. but
00:40:35 --> 00:40:37 I can't see straight ahead because the tumor
00:40:37 --> 00:40:41 was on my optic nerve. And I guess we should
00:40:41 --> 00:40:47 tell everybody about my ocular melanoma. Yeah,
00:40:47 --> 00:40:51 how did that, because this was, you had the diagnosis
00:40:51 --> 00:40:55 with the multiple sclerosis and like I kind of
00:40:55 --> 00:40:58 got ahead of it too because I said your joyful
00:40:58 --> 00:41:00 spirit. Never mind the fact that it seemed that
00:41:00 --> 00:41:03 you were getting hit with one thing after the
00:41:03 --> 00:41:05 other is like, how much more can we just lay
00:41:05 --> 00:41:08 on top of her and see, see if she's going to
00:41:08 --> 00:41:11 cave in? And so, yeah, so you can share how that
00:41:11 --> 00:41:15 all transpired and what to place and sound like
00:41:15 --> 00:41:18 multiple sclerosis is the best chronic illness
00:41:18 --> 00:41:21 in the world. But I'm going to lay it out there
00:41:21 --> 00:41:25 that if it wasn't for multiple sclerosis, you
00:41:25 --> 00:41:29 and I may not be having this conversation. because
00:41:29 --> 00:41:34 I could not be here. I went in to change my multiple
00:41:34 --> 00:41:37 sclerosis medication. I wanted to go on something
00:41:37 --> 00:41:40 called gelinia. That required going to see an
00:41:40 --> 00:41:44 ophthalmologist. I went in to see the ophthalmologist
00:41:44 --> 00:41:48 and there was one ophthalmologist in there said,
00:41:48 --> 00:41:50 hold on one second, I'm gonna go get another
00:41:50 --> 00:41:54 doctor. Came over and in my mind I'm thinking,
00:41:55 --> 00:41:57 okay, they see optic neuritis. because optic
00:41:57 --> 00:42:01 neuritis is a condition with multiple sclerosis.
00:42:02 --> 00:42:04 That's what they're seeing, not a big deal. So
00:42:04 --> 00:42:07 I even said to them, oh, I have optic neuritis.
00:42:07 --> 00:42:10 I said, I'm thinking that I'm having a relapse
00:42:10 --> 00:42:12 of it because I do have a little darkness in
00:42:12 --> 00:42:16 my eye. They said, no, it's not optic neuritis.
00:42:16 --> 00:42:19 And I said, I don't know that they know what
00:42:19 --> 00:42:23 they're talking about, but okay. So then they
00:42:23 --> 00:42:26 said, We're gonna send you to see a retina specialist
00:42:26 --> 00:42:32 and I was I said, all right Again, I don't know
00:42:32 --> 00:42:34 that they know what they're talking about. So
00:42:34 --> 00:42:37 fine. I'll go see this retina specialist I go
00:42:37 --> 00:42:40 by myself to see the retina specialist eight
00:42:40 --> 00:42:43 hours I was at the retina specialist. I was the
00:42:43 --> 00:42:48 youngest one there by probably 20 or 30 years
00:42:48 --> 00:42:52 and You were still a teenager at this time? No,
00:42:52 --> 00:42:56 no, no. This was only 14 years ago. Okay. I was
00:42:56 --> 00:43:00 still the youngest person there because And you
00:43:00 --> 00:43:03 had to go in and out of rooms So you would go
00:43:03 --> 00:43:05 in and get a test and then you would go sit back
00:43:05 --> 00:43:09 down Then they call you into another room and
00:43:09 --> 00:43:15 I kept hearing tumor mass all of this Words that
00:43:15 --> 00:43:19 I knew weren't great but nobody was grabbing
00:43:19 --> 00:43:22 their hair yet and running out of the room. So
00:43:22 --> 00:43:26 I thought, okay, I'm still eight hours not eating,
00:43:26 --> 00:43:30 having nobody to talk to, your eyes are dilated
00:43:30 --> 00:43:33 the entire time. And they finally said, okay,
00:43:33 --> 00:43:36 we're gonna do a dye test on you. So we need
00:43:36 --> 00:43:39 you to come in, we'll hook up an IV to you so
00:43:39 --> 00:43:43 that we can do this dye test for your eyes. And
00:43:43 --> 00:43:48 I had said, oh, whenever I get IVs inserted I
00:43:48 --> 00:43:51 have to lay down because with multiple sclerosis
00:43:51 --> 00:43:53 I would get that probably once or twice a year
00:43:53 --> 00:43:57 with my medication and I said or else I'll pass
00:43:57 --> 00:44:00 out or I'll blackout. They said well we can't
00:44:00 --> 00:44:03 because you have to be upright as soon as the
00:44:03 --> 00:44:05 dye goes in we have to immediately take the picture
00:44:05 --> 00:44:08 and I said okay we'll give this a whirl. Well
00:44:08 --> 00:44:11 as soon as the the IV went in I started to go
00:44:11 --> 00:44:14 down but we got me sitting back up I was okay
00:44:14 --> 00:44:18 they got the picture And when they were taking
00:44:18 --> 00:44:21 the IV out, now this has never happened to me,
00:44:21 --> 00:44:25 but why not happen? Took it out and I went down.
00:44:26 --> 00:44:30 I passed out. So I wake up on this dirty floor.
00:44:30 --> 00:44:32 To me, everything's dirty. If I'm on a floor,
00:44:32 --> 00:44:37 it's dirty. And I was so grossed out about it.
00:44:37 --> 00:44:39 And they were like, here, let's get you a pillow.
00:44:39 --> 00:44:41 I said, oh, can we just get me up off the floor?
00:44:42 --> 00:44:44 Thank goodness that was the last thing I had
00:44:44 --> 00:44:47 to do, but then I had to drive home. Again, I
00:44:47 --> 00:44:50 was only five minutes away from home, but the
00:44:50 --> 00:44:53 fear is I'm dilated. I just passed out. I haven't
00:44:53 --> 00:44:56 eaten in, at this point, probably 10 hours. Fine.
00:44:57 --> 00:45:00 They had to give me these little glasses things
00:45:00 --> 00:45:03 that... Therefore after a surgery, I thought
00:45:03 --> 00:45:06 if I get pulled over not only with my multiple
00:45:06 --> 00:45:09 sclerosis and they asked me to walk a fine line,
00:45:09 --> 00:45:13 then they see my eyes dilated like a crazy person.
00:45:13 --> 00:45:17 I am something brand new. We've never seen this
00:45:17 --> 00:45:21 one before. I was like, I am going to be screwed.
00:45:23 --> 00:45:26 Fortunately, I got home before all that. So after
00:45:26 --> 00:45:28 I passed out, I forgot all about this and they're
00:45:28 --> 00:45:33 giving me these little glasses things, they had
00:45:33 --> 00:45:36 said, we're making an appointment for you up
00:45:36 --> 00:45:39 at Will's Eye Hospital in Philadelphia. You don't
00:45:39 --> 00:45:41 have to worry about doing anything. We're going
00:45:41 --> 00:45:43 to call and make the appointment and we'll get
00:45:43 --> 00:45:45 with you when it's going to be. And I'm like,
00:45:45 --> 00:45:47 this has got something to do with that tumor.
00:45:48 --> 00:45:52 And now we're getting real. And they said just.
00:45:52 --> 00:45:55 You'll hear from us." And so then they called
00:45:55 --> 00:45:57 me and said, you know, in two weeks, you're going
00:45:57 --> 00:46:00 to be going up to Will's Eye Hospital to see
00:46:00 --> 00:46:04 the Shields. Take somebody with you. Of course,
00:46:04 --> 00:46:06 I'm going to take after that experience. Yes,
00:46:06 --> 00:46:09 somebody is going with me. So we had two young
00:46:09 --> 00:46:13 boys. My boys were maybe 10 and 13 years old.
00:46:13 --> 00:46:15 So I had to have my parents come down to watch
00:46:15 --> 00:46:18 them because Philadelphia was three and a half
00:46:18 --> 00:46:19 hours. And if it was going to be another eight
00:46:19 --> 00:46:23 hour appointment, we're staying there. So we
00:46:23 --> 00:46:25 went, had the appointment. It was another eight
00:46:25 --> 00:46:28 hours in and out of rooms, all kinds of testing.
00:46:29 --> 00:46:36 And they said, you have ocular melanoma and we're
00:46:36 --> 00:46:40 catching it. It's small. So that's good. Your
00:46:40 --> 00:46:42 chance of survival at that time was 50 % when
00:46:42 --> 00:46:45 we do the surgery, which is good. Actually 50
00:46:45 --> 00:46:47 % was good because if they, if it would have
00:46:47 --> 00:46:51 been bigger, it would have been like 70 or 80%.
00:46:51 --> 00:46:54 Chance of not surviving would have been like
00:46:54 --> 00:46:57 70 % or something like that. It was not a good
00:46:57 --> 00:47:01 number So they said we're gonna do surgery on
00:47:01 --> 00:47:06 you So that was on a Monday on Thursday. So go
00:47:06 --> 00:47:11 home get your Affairs in order. I said we have
00:47:11 --> 00:47:13 kids and they said we'll get somebody to watch
00:47:13 --> 00:47:15 them because you're gonna need to be here Thursday
00:47:15 --> 00:47:19 to Sunday Okay. What they had to do was insert
00:47:19 --> 00:47:25 a radiation disc behind my eye and then they
00:47:25 --> 00:47:28 sewed it shut and then you went back in on Sunday
00:47:28 --> 00:47:31 and they removed it. Oh yeah, this was such a
00:47:31 --> 00:47:35 fun time. They're inserting it behind your eye.
00:47:35 --> 00:47:39 I'm thinking of, not to make a joke of the situation,
00:47:39 --> 00:47:42 but I'm imagining, I'm imagining when you see
00:47:42 --> 00:47:46 these movies about a UFO abduction and they have
00:47:46 --> 00:47:49 them laid out and they're doing all these probings
00:47:49 --> 00:47:52 and they're poking in places that there shouldn't
00:47:52 --> 00:47:55 be any probing going on and you're on the other
00:47:55 --> 00:47:59 end of that. Do you feel all of it? I felt it
00:47:59 --> 00:48:03 all and more because when they told me well I
00:48:03 --> 00:48:05 mean not the actual thing but when they told
00:48:05 --> 00:48:09 me we are going to be inserting this disc behind
00:48:09 --> 00:48:13 your eye in my mind I'm thinking how is that
00:48:13 --> 00:48:15 disc going to get there are they going to have
00:48:15 --> 00:48:18 to cut this side of my eye do they go do they
00:48:18 --> 00:48:21 pull your eyeball out do they how in my mind
00:48:21 --> 00:48:24 and and then I'm like wait a minute all of my
00:48:24 --> 00:48:27 life i've been told don't put anything in your
00:48:27 --> 00:48:29 eyes don't let anything near your eyes and now
00:48:29 --> 00:48:31 you're telling me oh we're gonna go ahead and
00:48:31 --> 00:48:34 put this behind your eye yeah this is gonna all
00:48:34 --> 00:48:40 of this is not normal not normal at all but they
00:48:40 --> 00:48:43 they were the one well hey they know things and
00:48:43 --> 00:48:46 they saved my life so where did they go through
00:48:46 --> 00:48:53 did they go through push it behind your eyeball
00:48:53 --> 00:48:58 somehow but oh i don't i just don't know i never
00:48:58 --> 00:49:01 want to i mean i i watch the video so i kind
00:49:01 --> 00:49:05 of know how they do it but it just slides behind
00:49:05 --> 00:49:08 your eye and they they i think they have to stitch
00:49:08 --> 00:49:11 it there i don't know okay these are questions
00:49:11 --> 00:49:15 that i probably should know No, but you you felt
00:49:15 --> 00:49:18 it you said and that that's more important than
00:49:18 --> 00:49:20 anything actually when they inserted it they
00:49:20 --> 00:49:24 had me put under so Again, I don't know what
00:49:24 --> 00:49:28 was going on when it was happening But I did
00:49:28 --> 00:49:33 know when they had my eye sewn shut because When
00:49:33 --> 00:49:36 you shut your eyes and you try and you're not
00:49:36 --> 00:49:39 thinking you don't just open one eye at a time
00:49:39 --> 00:49:42 You open them both. So with it being sewn shut
00:49:42 --> 00:49:46 the searing pain that goes through that eye because
00:49:46 --> 00:49:52 it can't open is horrible. So for those four
00:49:52 --> 00:49:54 days I tried to keep my eyes shut as much as
00:49:54 --> 00:49:59 possible. There was no TV watching. Fortunately
00:49:59 --> 00:50:03 my husband was there so he read me books and
00:50:03 --> 00:50:07 we would have the radio on or the TV on and I
00:50:07 --> 00:50:10 just didn't watch anything. I had to assume he
00:50:10 --> 00:50:18 was feeding me some good food and to trust. I'm
00:50:18 --> 00:50:26 trusting you dear with my life. Yeah. Yeah. So
00:50:26 --> 00:50:29 it was not. You had company. That's good that
00:50:29 --> 00:50:33 you had someone with you while you're laid out,
00:50:33 --> 00:50:35 not not really able or not wanting to open your
00:50:35 --> 00:50:41 eyes because of the pain. My goodness. I slept
00:50:41 --> 00:50:44 a lot. In fact, I didn't even stay in a hospital.
00:50:44 --> 00:50:48 They had me in like a retirement home or not
00:50:48 --> 00:50:52 a nursing home, but kind of like a retirement
00:50:52 --> 00:50:55 home, I guess, because it had it was a condo
00:50:55 --> 00:50:58 that had two bedrooms, two bathrooms, a kitchen,
00:50:59 --> 00:51:03 a dining room and a living room. And they had
00:51:03 --> 00:51:06 two bedrooms because he wasn't supposed to. Stay
00:51:06 --> 00:51:09 in the same room as me because I was radioactive.
00:51:09 --> 00:51:12 I actually had these things on me labeling me
00:51:12 --> 00:51:15 radioactive So anybody that saw me would be saying
00:51:15 --> 00:51:19 oh boy. We need to stay away from her So I wasn't
00:51:19 --> 00:51:23 allowed out of my place. He was So he could go
00:51:23 --> 00:51:27 out and get us food and stuff like that But he
00:51:27 --> 00:51:30 wasn't supposed to sleep in the same bed, but
00:51:30 --> 00:51:34 he didn't he did he was okay with that and that
00:51:34 --> 00:51:36 was 14 years ago and thank goodness he's still
00:51:36 --> 00:51:41 alive so I guess the radiation yeah and I have
00:51:41 --> 00:51:43 heard from other people that they also the same
00:51:43 --> 00:51:45 thing their husbands said they were staying in
00:51:45 --> 00:51:48 the room with them so I guess it's an abundance
00:51:48 --> 00:51:53 of caution and that was the the other uh close
00:51:53 --> 00:51:56 call where you said it was a 50 -50 % chance
00:51:56 --> 00:51:58 that's a lot better than you said it could have
00:51:58 --> 00:52:01 been, and everything with the surgery, it went
00:52:01 --> 00:52:03 as good as it could go, considering the fact?
00:52:03 --> 00:52:06 Correct. Oh, yes, because now my tumor is flat.
00:52:07 --> 00:52:10 So the only thing I get checked now every two
00:52:10 --> 00:52:15 years, I have to get scans because oculomelanoma
00:52:15 --> 00:52:17 does like to spread the wealth to your lungs
00:52:17 --> 00:52:20 and to your liver. So you have to make sure,
00:52:20 --> 00:52:24 because I have met somebody that was 25 years
00:52:24 --> 00:52:29 out and it metastasized so she yeah she ended
00:52:29 --> 00:52:34 up passing away. On the count of that I you don't
00:52:34 --> 00:52:37 have to answer but I mean I'm just curious what
00:52:37 --> 00:52:39 goes through everybody's going to be different
00:52:39 --> 00:52:42 the way they deal with it but for you and then
00:52:42 --> 00:52:45 you getting past the surgery I'm just curious
00:52:45 --> 00:52:49 if you had a lot of those fears inside of you
00:52:49 --> 00:52:52 that you dealt with for a time. Like, my goodness,
00:52:52 --> 00:52:57 I hope this doesn't just show back up. And it
00:52:57 --> 00:53:00 takes away you being able to live your life because
00:53:00 --> 00:53:02 this is still something that's in the back of
00:53:02 --> 00:53:05 your mind or it's weighing on you. Like, my goodness,
00:53:05 --> 00:53:07 it could change any minute. And I'm like a ticking
00:53:07 --> 00:53:11 time bomb. That is exactly when I first had to
00:53:11 --> 00:53:14 go do the surgery and then go back every three
00:53:14 --> 00:53:18 months to get checked for the first year and
00:53:18 --> 00:53:22 then I went back every six months. My fear was
00:53:22 --> 00:53:25 that I wasn't going to see my boys graduate from,
00:53:26 --> 00:53:29 first of all, even get to hit 16 or 18 years
00:53:29 --> 00:53:33 old, graduate from high school. I'm not going
00:53:33 --> 00:53:35 to be a grandma. All of those kind of things
00:53:35 --> 00:53:38 went through my mind. And I imagine that goes
00:53:38 --> 00:53:40 through everybody's mind. In fact, I've been
00:53:40 --> 00:53:43 very lucky. because there are so many people
00:53:43 --> 00:53:46 that when they get diagnosed with ocular melanoma,
00:53:46 --> 00:53:51 it's large and their lifespan was I'm sure cut
00:53:51 --> 00:53:54 much shorter than anybody would have ever guessed.
00:53:56 --> 00:54:00 So yes, it was very nerve wracking. Knock on
00:54:00 --> 00:54:04 wood. I've seen my oldest son get married to
00:54:04 --> 00:54:07 a lovely girl. And my youngest son, he passed
00:54:07 --> 00:54:13 the bar. So He is now an attorney and I hope
00:54:13 --> 00:54:17 to see him get married, but I don't see any reason
00:54:17 --> 00:54:22 that I won't be able to because I have the same
00:54:22 --> 00:54:25 probability of getting hit by a car that anybody
00:54:25 --> 00:54:28 else out there has. So I'm not going to worry
00:54:28 --> 00:54:31 about it. There are so many things that can happen
00:54:31 --> 00:54:36 to me that are unexpected. But I'm not going
00:54:36 --> 00:54:39 to worry about those. So I'm just going to keep
00:54:39 --> 00:54:42 my proverbial eye on the ball and keep getting
00:54:42 --> 00:54:46 my scans and doing everything that I can to keep
00:54:46 --> 00:54:49 myself healthy. And it's always going to live
00:54:49 --> 00:54:53 here, but it's not going to dictate how correct
00:54:53 --> 00:54:57 dormant it always is going to have. It's going
00:54:57 --> 00:54:59 to be here, but I'm not going to provide it a
00:54:59 --> 00:55:02 seat at the table. That's a beautiful way to
00:55:02 --> 00:55:06 put it. That really is and I think the things
00:55:06 --> 00:55:08 that you're doing everything that you mentioned
00:55:08 --> 00:55:13 it's only going to strengthen the powerful innate
00:55:13 --> 00:55:17 ability the body has to heal and to stay well
00:55:17 --> 00:55:20 when you're doing these things because Everything
00:55:20 --> 00:55:23 is connected from the psychological, the emotional,
00:55:23 --> 00:55:26 the physical. And so you can you maybe you're
00:55:26 --> 00:55:28 eating well or you're exercising, but you have
00:55:28 --> 00:55:31 stress up the yin yang. You're anxious. You're
00:55:31 --> 00:55:35 in constant worries. And that's going to promote
00:55:35 --> 00:55:37 a lot of things going on within you. And that
00:55:37 --> 00:55:42 can also help reactivate certain cancerous cells.
00:55:42 --> 00:55:46 They even have studies where the stress can enhance
00:55:46 --> 00:55:51 or it can really bring to life these tumorous
00:55:51 --> 00:55:56 cells in the opposite or having the opposite
00:55:56 --> 00:55:58 frame of mind where maybe you're living your
00:55:58 --> 00:56:00 life, you're filling your life with things you
00:56:00 --> 00:56:03 enjoy, you're filling your life with love and
00:56:03 --> 00:56:06 embracing the moment and appreciating the people
00:56:06 --> 00:56:09 around you and what you have, the thankfulness
00:56:09 --> 00:56:10 and gratitude and all that type of thing that
00:56:10 --> 00:56:14 could have the opposite effect. And like you've
00:56:14 --> 00:56:16 said, where maybe you do have this in you, but
00:56:16 --> 00:56:19 it's dormant. There's no There's no food for
00:56:19 --> 00:56:22 it to grow. You're starving it. Exactly what
00:56:22 --> 00:56:25 I'm trying to do is starve it. And stress, stress
00:56:25 --> 00:56:31 is horrible for multiple sclerosis too. So I
00:56:31 --> 00:56:36 don't need any more stress in my life. And people
00:56:36 --> 00:56:38 always say, well, don't stress about it. Yeah,
00:56:38 --> 00:56:42 good luck with it. Everybody stress. It's easier
00:56:42 --> 00:56:45 said than done, right? But in my mind, as far
00:56:45 --> 00:56:49 as the ocular melanoma, I am just doing everything
00:56:49 --> 00:56:54 that I can. And if it so happens springs up somewhere
00:56:54 --> 00:56:58 else, then we will deal with it because I'm aware
00:56:58 --> 00:57:02 that it could happen. Am I going to be happy
00:57:02 --> 00:57:04 if it happens? No, but I'm going to do the best
00:57:04 --> 00:57:07 I can because I want to keep marching forward.
00:57:07 --> 00:57:09 Like I said, I still have another son that I
00:57:09 --> 00:57:12 want to see get married and have great kids.
00:57:12 --> 00:57:15 Yeah, still living your life. There's still a
00:57:15 --> 00:57:18 lot of life to live. Yeah, that was another reason
00:57:18 --> 00:57:22 why it was great to hear your perspective and
00:57:22 --> 00:57:24 the things that you've been through because of
00:57:24 --> 00:57:26 the outlook that you still have on things. And
00:57:26 --> 00:57:28 you said from the beginning, you're like, I'm
00:57:28 --> 00:57:31 an optimistic person. I always see I'm looking
00:57:31 --> 00:57:34 for the greater of things or I'm seeing the positive
00:57:34 --> 00:57:38 in things. And I think that could be. very beneficial
00:57:38 --> 00:57:41 to help you with your health and to get well
00:57:41 --> 00:57:43 with the recovery and to stay well is having
00:57:43 --> 00:57:46 that. I mean, there's some people may say, oh,
00:57:46 --> 00:57:49 you're just that's wishful thinking or you're
00:57:49 --> 00:57:52 you're you're. But there's a difference between
00:57:52 --> 00:57:54 like you said, you you are aware of these things.
00:57:55 --> 00:57:57 You're doing everything within your ability and
00:57:57 --> 00:58:00 your control that you can do to prevent this
00:58:00 --> 00:58:03 and everything that is going to happen outside
00:58:03 --> 00:58:06 of that. Why worry about it if it's going to
00:58:06 --> 00:58:08 be out of my hands and out of my control? Anyways,
00:58:08 --> 00:58:10 I'm just going to live my life and make the best
00:58:10 --> 00:58:13 of it. Well, I do have still some some breath
00:58:13 --> 00:58:15 in my lungs and some some days to look forward
00:58:15 --> 00:58:20 to. I just want to enjoy life and you can't enjoy
00:58:20 --> 00:58:24 it if you're constantly worrying about other
00:58:24 --> 00:58:28 things. They take over. Those worries take over.
00:58:28 --> 00:58:31 They do. They paralyze you. I'm not a what if.
00:58:32 --> 00:58:36 I don't believe in what ifs. What if it comes
00:58:36 --> 00:58:39 back? Well, what if it does? What are we going
00:58:39 --> 00:58:47 to do about it? What if I'm hit by a car? The
00:58:47 --> 00:58:49 ceiling could collapse right now. What if that
00:58:49 --> 00:58:52 I mean we could you could go on the list exactly
00:58:52 --> 00:58:55 Just like somebody had asked me they have a ton
00:58:55 --> 00:58:57 of plaques in their body for multiple sclerosis
00:58:57 --> 00:59:00 Am I gonna die? No, you're not gonna die. You're
00:59:00 --> 00:59:03 not gonna die And I don't care if you have a
00:59:03 --> 00:59:07 thousand plaques. That doesn't mean that you're
00:59:07 --> 00:59:09 gonna have any kind of disability You can have
00:59:09 --> 00:59:12 one plaque and it's in a really bad spot And
00:59:12 --> 00:59:14 that one plaque can cause you to be disabled,
00:59:14 --> 00:59:17 but I don't care if you have a million plaques.
00:59:18 --> 00:59:20 I really wish neurologists wouldn't tell people
00:59:20 --> 00:59:23 how many plaques they have because people with
00:59:23 --> 00:59:27 chronic illnesses focus on numbers and how it's
00:59:27 --> 00:59:30 going to affect them. They're not seeing the
00:59:30 --> 00:59:33 blueprint on where those plaques reside in their
00:59:33 --> 00:59:37 body, especially when they say, and my pinky
00:59:37 --> 00:59:40 was numb. Well, congratulations. That's awesome.
00:59:41 --> 00:59:43 Because when I fall asleep on my hand, my entire
00:59:43 --> 00:59:47 hand goes, you're very lucky. It's only your
00:59:47 --> 00:59:51 pinky. And then they'll say, and it lasted for
00:59:51 --> 00:59:55 a day. Again, that's great. Oh, but I have a
00:59:55 --> 00:59:58 thousand plaques. Okay. Can you live with that
00:59:58 --> 01:00:00 pinky being numb? Because if that's all those
01:00:00 --> 01:00:03 thousand plaques are going to do to you, continue
01:00:03 --> 01:00:08 living your life. Right. I just wish people wouldn't
01:00:08 --> 01:00:14 focus on the what ifs, what if that plaque. That's
01:00:14 --> 01:00:17 probably where people that they can't seem to
01:00:17 --> 01:00:20 get over that, they can't seem to get past that,
01:00:20 --> 01:00:22 that's probably where how you said something
01:00:22 --> 01:00:24 that could be helpful is if they have someone
01:00:24 --> 01:00:26 to talk to about it, because that's something
01:00:26 --> 01:00:28 that they're going to have to deal with, come
01:00:28 --> 01:00:31 to terms with. If not, then it's going to be
01:00:31 --> 01:00:34 just a dark cloud over them that eventually will
01:00:34 --> 01:00:39 probably end up consuming the zest from, or any
01:00:39 --> 01:00:43 potential to enjoy the rest of their life. And
01:00:43 --> 01:00:45 that's a scary place to be. Well, eat away at
01:00:45 --> 01:00:49 them. Did you go through for yourself, or did
01:00:49 --> 01:00:53 you, like during the times of where you, maybe
01:00:53 --> 01:00:56 you had some depressive episodes? I don't know
01:00:56 --> 01:00:58 what it looked like. Did you speak with, no,
01:00:58 --> 01:01:02 that was it? I am an eternal optimist, so. That's
01:01:02 --> 01:01:04 just ingrained. That's just part of your DNA.
01:01:04 --> 01:01:08 I think so, but I would highly recommend to people
01:01:08 --> 01:01:13 to talk to somebody because I'm not saying that
01:01:13 --> 01:01:16 there are times that maybe I maybe it would help
01:01:16 --> 01:01:21 me, but I am also an open book. So as soon as
01:01:21 --> 01:01:23 something is bothering me, everybody's going
01:01:23 --> 01:01:29 to hear about it. You voice your concerns, right?
01:01:29 --> 01:01:32 I do. I do. You don't bottle things. I don't
01:01:32 --> 01:01:35 and and I'm very fortunate because I have a fantastic
01:01:35 --> 01:01:40 support system and maybe these people that find
01:01:40 --> 01:01:43 themselves in a bad place just don't have a support
01:01:43 --> 01:01:46 system and I Don't even know how to tell them
01:01:46 --> 01:01:49 to find a support system. I'm lucky because I
01:01:49 --> 01:01:53 have I had a wonderful, my dad is wonderful,
01:01:54 --> 01:01:56 my mom was wonderful, my sister, my husband,
01:01:56 --> 01:02:00 my boys. I have a great support system surrounding
01:02:00 --> 01:02:04 me so I can bounce things off of them. And my
01:02:04 --> 01:02:08 friends are also there. If I don't have somebody
01:02:08 --> 01:02:11 here I can talk to, I can just text somebody
01:02:11 --> 01:02:14 and say, hey, you have a moment to talk? And
01:02:14 --> 01:02:16 they'll get on the phone with me. And I really
01:02:16 --> 01:02:21 wish everybody had a great support system. And
01:02:21 --> 01:02:24 I wish I had some kind of magic wand that I could
01:02:24 --> 01:02:27 wave so that they had it. I don't even know how
01:02:27 --> 01:02:30 to direct them to them. However, there are support
01:02:30 --> 01:02:35 groups. So. Yeah. You're right, especially with
01:02:35 --> 01:02:38 the wonderful age of the internet, there's communities
01:02:38 --> 01:02:41 for you name it, whatever you're looking for,
01:02:41 --> 01:02:43 whatever you need. And I'm sure there's, like
01:02:43 --> 01:02:45 you mentioned, there's support groups for people
01:02:45 --> 01:02:47 that are dealing with this specific condition.
01:02:47 --> 01:02:49 And they wouldn't have to even go in person.
01:02:49 --> 01:02:53 They have Zoom ones now. So it would be well
01:02:53 --> 01:02:55 worth looking into because then they're with
01:02:55 --> 01:02:57 like -minded people. I know there are people
01:02:57 --> 01:03:01 out there that don't have family and probably
01:03:01 --> 01:03:05 feel very isolated. And it would be, I would
01:03:05 --> 01:03:08 think it would be very beneficial for them to
01:03:08 --> 01:03:13 get therapy and to join a support group, to have
01:03:13 --> 01:03:16 a wall to bounce things off of and just the friendship.
01:03:17 --> 01:03:20 Do you want to grab a coffee? Want to get together?
01:03:21 --> 01:03:23 It does good. It does good for the soul and the
01:03:23 --> 01:03:26 spirit. I've seen these documentaries of people,
01:03:26 --> 01:03:29 I think they call it the Blue Zone, where there's
01:03:29 --> 01:03:31 certain parts of the world and these people live
01:03:31 --> 01:03:34 to be a small demographic of people. They live
01:03:34 --> 01:03:37 to be, I think the Blue Zone is considered over
01:03:37 --> 01:03:40 a hundred years old. And there's an island in
01:03:40 --> 01:03:42 Japan. There's a few other places, but Japan
01:03:42 --> 01:03:45 is the one that sticks out. right now and I'm
01:03:45 --> 01:03:48 able to recall but one of the main things they
01:03:48 --> 01:03:52 ask him like what is it with with this area and
01:03:52 --> 01:03:54 these people and one of the main things for them
01:03:54 --> 01:03:58 is even at their age of 100 they still get together
01:03:58 --> 01:04:01 they garden together like you said they have
01:04:01 --> 01:04:03 tea they're having coffee they're even doing
01:04:03 --> 01:04:06 like some tai chi or these exercises together
01:04:06 --> 01:04:10 and it's like the sense of community of support
01:04:10 --> 01:04:14 and this camaraderie that we've built this relation
01:04:14 --> 01:04:17 relationships that we've built and this is this
01:04:17 --> 01:04:21 has been our medicine to keep us to keep us not
01:04:21 --> 01:04:23 just alive to be a hundred because you could
01:04:23 --> 01:04:25 be a hundred but if you're crippled and not able
01:04:25 --> 01:04:28 to do anything then what is that but they're
01:04:28 --> 01:04:31 still able to move around enjoy themselves and
01:04:31 --> 01:04:34 live a happy and joyful life at the age of a
01:04:34 --> 01:04:36 hundred and that was one of the main things was
01:04:36 --> 01:04:40 just to be able to bond and interact on a personal
01:04:40 --> 01:04:44 intimate relationship share that time with with
01:04:44 --> 01:04:48 people that they've grown to know, enjoy and
01:04:48 --> 01:04:51 have a very beautiful relationship with. Sounds
01:04:51 --> 01:04:53 like a great reason to get up in the morning.
01:04:54 --> 01:04:58 That's right. Yeah. You know, Rachel, you mentioned
01:04:58 --> 01:05:01 that you're an open book. I want you to kind
01:05:01 --> 01:05:04 of touch on the whole reason for wanting to.
01:05:04 --> 01:05:07 Write this memoir in the first place because
01:05:07 --> 01:05:10 you do have a memoir out and I'm gonna link it
01:05:10 --> 01:05:13 in the show notes So people can be pointed to
01:05:13 --> 01:05:16 this book that you've written this memoir that
01:05:16 --> 01:05:19 is now available But if you can just talk a bit
01:05:19 --> 01:05:21 about the whole reason behind you wanting to
01:05:21 --> 01:05:26 write this and how that played out So I came
01:05:26 --> 01:05:31 across journals that I wrote when I was 17 because
01:05:31 --> 01:05:36 my neurologist had said, start writing a journal
01:05:36 --> 01:05:40 and taking notes about feelings. Like if you
01:05:40 --> 01:05:44 lost feeling in your fingers, take notes and
01:05:44 --> 01:05:46 how long you lost the feeling, when did it come
01:05:46 --> 01:05:49 back, just journal. And so I kept doing that
01:05:49 --> 01:05:53 even through college, even though nobody knew
01:05:53 --> 01:05:56 about this, I would still pay attention to my
01:05:56 --> 01:06:00 body, listen to it, take notes. And I stumbled
01:06:00 --> 01:06:04 upon that and I thought, you know what? I think
01:06:04 --> 01:06:09 I want to write a book so my boys understand
01:06:09 --> 01:06:13 maybe the quirkiness of me when they were kids,
01:06:14 --> 01:06:17 why their mom every so often would have a nurse
01:06:17 --> 01:06:20 coming into the house and hooking her up with
01:06:20 --> 01:06:24 IVs. And then I would sit there and give myself
01:06:24 --> 01:06:28 medication and remove the IV and why I couldn't
01:06:28 --> 01:06:34 go do things because I had to give myself the
01:06:34 --> 01:06:38 IV or for any number of reasons. I wanted them
01:06:38 --> 01:06:44 to understand that I was wanting their life to
01:06:44 --> 01:06:47 be uninterrupted, which I think we did a pretty
01:06:47 --> 01:06:50 darn good job with that. And I never missed.
01:06:51 --> 01:06:53 I can't say never. I think there was two games.
01:06:53 --> 01:06:56 My boys played all kinds of sports like I did.
01:06:57 --> 01:06:59 And I always wanted to make sure I was at a game.
01:06:59 --> 01:07:02 I never wanted them to feel like I didn't want
01:07:02 --> 01:07:08 to be at a game. So I would always work my medications
01:07:08 --> 01:07:12 around their games. do that kind of stuff. But
01:07:12 --> 01:07:16 I wanted them to get a better feeling about what
01:07:16 --> 01:07:19 was going on, because I never said, I have multiple
01:07:19 --> 01:07:21 sclerosis. It would just be something like, oh,
01:07:21 --> 01:07:24 my leg isn't working well today. And then when
01:07:24 --> 01:07:28 I got the cancer diagnosis, when we'd have to
01:07:28 --> 01:07:30 make the trip to Philadelphia and constantly
01:07:30 --> 01:07:34 had to have my parents come, I would say, something's
01:07:34 --> 01:07:36 wrong with my eye. Never wanted to utter the
01:07:36 --> 01:07:38 word, the C word, because no kid needs to hear
01:07:38 --> 01:07:42 that. So I just wanted them to get a glimpse
01:07:42 --> 01:07:46 of our whole life, the boys, our whole family,
01:07:47 --> 01:07:52 get a glimpse into how I was trying to maneuver
01:07:52 --> 01:07:58 and run life so that they understood it was all
01:07:58 --> 01:08:02 because I wanted us to have just a normal family.
01:08:03 --> 01:08:06 They didn't find out. I don't think I told them
01:08:06 --> 01:08:11 about. any of this by name until they were 16
01:08:11 --> 01:08:15 or 17 years old. And then my older son decided
01:08:15 --> 01:08:20 he was going to be a neuroscientist to cure multiple
01:08:20 --> 01:08:23 sclerosis. Well, he went off to school to get
01:08:23 --> 01:08:27 a biology degree, but he canned the neuroscientist
01:08:27 --> 01:08:32 thing after a while. He said, wow, I don't know
01:08:32 --> 01:08:37 that I can do that. It's intense. And I said,
01:08:37 --> 01:08:39 that's okay. There's somebody out there that's
01:08:39 --> 01:08:42 going to do it. And I want you to do what you
01:08:42 --> 01:08:45 want to do, not something for, you know, that
01:08:45 --> 01:08:49 you think. Yeah. Find your groove. Don't do that.
01:08:50 --> 01:08:53 And then my younger son, he would always send
01:08:53 --> 01:08:55 me stuff like, Oh, have you tried this with MS?
01:08:55 --> 01:08:58 And that's also another funny thing that people
01:08:58 --> 01:09:03 think that diet and these different vitamins
01:09:03 --> 01:09:05 and all this is going to be the great cure for
01:09:05 --> 01:09:08 MS. And it's good that you want to focus on a
01:09:08 --> 01:09:10 healthy lifestyle. It's good that you want to
01:09:10 --> 01:09:14 focus on a healthy diet. I'm a vegetarian, but
01:09:14 --> 01:09:18 that stuff isn't going to cure me. I mean, if
01:09:18 --> 01:09:24 I decide I'm going to have a beer, that is not
01:09:24 --> 01:09:30 going to be the thing that just is going to put
01:09:30 --> 01:09:36 me in my grave with MS. And that's fine. If that's
01:09:36 --> 01:09:40 how people want to get through life with MS is
01:09:40 --> 01:09:44 to follow different diets. And as long as it's
01:09:44 --> 01:09:47 a diet that's not hurting them, that's okay.
01:09:47 --> 01:09:50 I don't take anything away from anybody. But
01:09:50 --> 01:09:52 what I know is that I have been a vegetarian
01:09:52 --> 01:09:56 for 35 years. And they tell you that, oh, a vegetarian
01:09:56 --> 01:10:01 diet is great for MS. Well, But then again, maybe
01:10:01 --> 01:10:06 that's why I've done so well for 37 years. I
01:10:06 --> 01:10:10 just don't know. Yeah, whether it could have
01:10:10 --> 01:10:13 progressed more had you not, who knows? Yeah,
01:10:13 --> 01:10:17 who knows? I don't know and nobody knows. Well,
01:10:17 --> 01:10:19 you're still optimistic about the fact that there
01:10:19 --> 01:10:23 is going to be one day a cure for it and Godspeed,
01:10:23 --> 01:10:26 hopefully sooner than later, but that there are
01:10:26 --> 01:10:30 things that you can do. things that you can lifestyle
01:10:30 --> 01:10:33 changes to, I guess, to manage it a bit better
01:10:33 --> 01:10:36 and not just to say, oh, the hell with it. I
01:10:36 --> 01:10:37 got it. And I'm just going to let it all hang
01:10:37 --> 01:10:41 now. I don't like some people that they they
01:10:41 --> 01:10:45 they with the let's just throw diabetes or diet
01:10:45 --> 01:10:48 diabetics. And they still don't take care of
01:10:48 --> 01:10:50 themselves. You can manage it. You can you can
01:10:50 --> 01:10:53 really manage it. And there's even cases of it
01:10:53 --> 01:10:56 being reversed and pretty much written of. But.
01:10:56 --> 01:10:58 There are some people who they just keep doing
01:10:58 --> 01:11:01 what they're doing and little by little their
01:11:01 --> 01:11:03 body just starts deteriorating. You can't get
01:11:03 --> 01:11:06 away with it. Your body's forgiving, but not
01:11:06 --> 01:11:10 that forgiving. Not at all. Yeah, it's it wants
01:11:10 --> 01:11:13 to right the ship. Doesn't want you to keep tipping
01:11:13 --> 01:11:17 it over. I read something recently that there's
01:11:17 --> 01:11:19 some form of there's some kind of bacterium.
01:11:20 --> 01:11:24 So this has to do with food that could. be something
01:11:24 --> 01:11:27 to help with multiple sclerosis, maybe finding
01:11:27 --> 01:11:29 some kind of cure, finding the gut bacteria.
01:11:30 --> 01:11:34 So that could be something to do with food. So
01:11:34 --> 01:11:37 there is something to do with that, but I also
01:11:37 --> 01:11:40 don't believe because there's a number of diets
01:11:40 --> 01:11:42 throughout my years with MS that they're like,
01:11:42 --> 01:11:45 oh, follow this diet and you're going to be cured.
01:11:46 --> 01:11:48 Oh, follow this diet, you're going to be cured.
01:11:48 --> 01:11:52 Okay, if it was that easy if it was that easy
01:11:52 --> 01:11:57 we would nobody would have MS The sad thing is
01:11:57 --> 01:11:59 when it comes to a lot of this stuff They see
01:11:59 --> 01:12:02 that there's a group of people that are that
01:12:02 --> 01:12:03 are desperate for answers and they're gonna try
01:12:03 --> 01:12:06 to sell something to them Oh, absolutely same
01:12:06 --> 01:12:08 thing with fight and they make a business out
01:12:08 --> 01:12:10 of it. Yep. Same thing with vitamins Oh somebody
01:12:10 --> 01:12:13 will say oh this vitamin has helped me. Well
01:12:13 --> 01:12:17 good. I'm glad it helped you but Nobody would
01:12:17 --> 01:12:20 have MS if it was this one vitamin magic pill,
01:12:21 --> 01:12:23 magic pill. And that's what everybody is looking
01:12:23 --> 01:12:26 for the magic pill. I mean, I would love for
01:12:26 --> 01:12:29 that. But I think it's a little, little more
01:12:29 --> 01:12:32 complex, right? Something like that. And in fact,
01:12:33 --> 01:12:37 even when they do find a reversal, it's not going
01:12:37 --> 01:12:41 to be a simple take a pill. It's got to be something
01:12:41 --> 01:12:44 else because we have pills now with MS. I mean
01:12:44 --> 01:12:47 it is great that they've come from where you
01:12:47 --> 01:12:52 would have to do injections and then it went
01:12:52 --> 01:12:55 to the pills and now it's down to like where
01:12:55 --> 01:12:58 you can get every six months go in for an infusion.
01:12:58 --> 01:13:00 That's the one that I'm on and I'm grateful because
01:13:00 --> 01:13:03 I don't have to worry about did I miss a pill?
01:13:03 --> 01:13:06 Geez, I don't feel like giving myself an injection
01:13:06 --> 01:13:09 today. Now, every six months, I just have it
01:13:09 --> 01:13:11 on my calendar. I'm going in, getting my six
01:13:11 --> 01:13:15 -hour okra vis infusion, and then I get to go
01:13:15 --> 01:13:17 home and not worry about it again for six months.
01:13:18 --> 01:13:21 Love it. You know, that's almost as good as a
01:13:21 --> 01:13:25 cure, even though, you know, you still have the...
01:13:25 --> 01:13:28 Not that I get relapses anymore, but it's just
01:13:28 --> 01:13:32 the eventual thing with MS that... Eventually,
01:13:32 --> 01:13:35 your legs just don't. It could also be age. I
01:13:35 --> 01:13:39 don't know. Combination. I like to always. Yeah,
01:13:39 --> 01:13:42 I always say I can't just blame it on that because
01:13:42 --> 01:13:44 I am getting older. Everybody's getting older.
01:13:47 --> 01:13:50 I don't I just don't know. I don't have the answer.
01:13:50 --> 01:13:54 Right now. But you're still it sounds like you're
01:13:54 --> 01:13:57 still. living your life, you're still enjoying
01:13:57 --> 01:13:59 your life. You have some beautiful people around
01:13:59 --> 01:14:03 you that you're able to spend and cherish the
01:14:03 --> 01:14:05 days with. And that's wonderful. And then with
01:14:05 --> 01:14:08 the idea with the book, with the journals, you
01:14:08 --> 01:14:10 revisiting the journals and you piecing it together.
01:14:11 --> 01:14:16 And you said that you wrote it. And you didn't
01:14:16 --> 01:14:18 know that was something I was going to ask you,
01:14:18 --> 01:14:20 but I let you just carry on and you answered
01:14:20 --> 01:14:22 my question because I was going to ask you. So
01:14:22 --> 01:14:25 this whole time or for how long did you hold
01:14:25 --> 01:14:29 off on telling your children or your two boys
01:14:29 --> 01:14:31 about it? And you said not until they were 16,
01:14:31 --> 01:14:34 17. And you wrote the you wrote the book and
01:14:34 --> 01:14:37 you said that they just recently read it. And
01:14:37 --> 01:14:40 what was their reaction or their response to
01:14:40 --> 01:14:43 it when they let you know, like, we finally read
01:14:43 --> 01:14:48 it, Mom. Well, it's funny because they said you
01:14:48 --> 01:14:51 write books like you're talking to us, just like
01:14:51 --> 01:14:53 you talk. And I said, well, how else would I
01:14:53 --> 01:14:56 write a book? I'm your mom. That's how I am.
01:14:56 --> 01:14:59 I'm going to have a conversation with you. And
01:14:59 --> 01:15:01 they said, well, that's how the book feels like
01:15:01 --> 01:15:03 you're having a conversation. Oh, so it feels
01:15:03 --> 01:15:07 personal. It's real personal. But it's not. It
01:15:07 --> 01:15:10 wasn't just personal for them. But they said
01:15:10 --> 01:15:12 that it sounds like you're just having a conversation
01:15:12 --> 01:15:16 with the reader. And I said that was my intention.
01:15:16 --> 01:15:20 Yeah, I said that's my intention. It's not a
01:15:20 --> 01:15:23 this is what you have to do. This is going to
01:15:23 --> 01:15:26 solve everything. This is my life and I'm just
01:15:26 --> 01:15:29 telling you about it. Oh, that's probably, I
01:15:29 --> 01:15:31 guess that was a compliment thing, because that
01:15:31 --> 01:15:33 was how you were trying to come across, right?
01:15:34 --> 01:15:37 Come across as like, this is a personal conversation
01:15:37 --> 01:15:40 that I'm having. It's not a manual, a reader's
01:15:40 --> 01:15:42 manual on what to do and how to do it step by
01:15:42 --> 01:15:45 step. And that kind of takes the emotion and
01:15:45 --> 01:15:47 the intimacy out of it anyways. I think if you're
01:15:47 --> 01:15:50 reading, you could read a manual to how to clean
01:15:50 --> 01:15:53 your coffee machine by, it's pretty dry. Exactly.
01:15:54 --> 01:15:56 And the same thing with MS. I mean, there are
01:15:56 --> 01:16:00 plenty of books out there that, OK, these are
01:16:00 --> 01:16:03 written by neurologists and so matter of fact
01:16:03 --> 01:16:06 about everything. But at the end of the day,
01:16:06 --> 01:16:09 not every person is the same. In fact, I just
01:16:09 --> 01:16:11 heard recently, and this was the first time I'd
01:16:11 --> 01:16:16 ever heard this, that multiple sclerosis is the
01:16:16 --> 01:16:20 snowflake illness. Not one person is the same,
01:16:20 --> 01:16:22 just like a snowflake. And I thought that was
01:16:22 --> 01:16:26 a fantastic analogy. I remember you did say that
01:16:26 --> 01:16:32 early on. You said that everybody is going to
01:16:32 --> 01:16:34 experience it completely different. It's not
01:16:34 --> 01:16:38 a one cookie cutter and one size fits all. No,
01:16:38 --> 01:16:42 it is not. So your experience is completely different
01:16:42 --> 01:16:44 to the next woman or the next man having MS.
01:16:44 --> 01:16:47 Correct. I mean, there are going to be some similarities,
01:16:47 --> 01:16:52 but just because I have weakness on the left
01:16:52 --> 01:16:55 side of my body, The other person might have
01:16:55 --> 01:16:58 it on the right side of the body or just in their
01:16:58 --> 01:17:03 hands, just in their feet, just cog fog. They
01:17:03 --> 01:17:07 have cognitive issues, their eyes, it could be
01:17:07 --> 01:17:11 their eyes. You talked about other readers who've
01:17:11 --> 01:17:15 read your memoir and this is talking about your
01:17:15 --> 01:17:17 experience with MS and just the things that you
01:17:17 --> 01:17:19 went through, but even people who don't even
01:17:19 --> 01:17:22 have that, they... you know, they received it
01:17:22 --> 01:17:24 in a certain way or say, wow, this was something
01:17:24 --> 01:17:28 that was that I could appreciate your story and
01:17:28 --> 01:17:31 thank you for sharing it. Yes. They've had other
01:17:31 --> 01:17:34 chronic illnesses or people that don't even have
01:17:34 --> 01:17:37 chronic illnesses said I get so down on myself.
01:17:38 --> 01:17:42 But this was, I guess, for a lack of better terms,
01:17:42 --> 01:17:45 inspirational. Right. Because you don't let things
01:17:45 --> 01:17:51 get you down and you just take every day. as
01:17:51 --> 01:17:55 it comes. And I try to live my life that way.
01:17:55 --> 01:17:58 It's contagious. You know, sharing these stories
01:17:58 --> 01:18:02 in the same way we talked about this a bit beforehand
01:18:02 --> 01:18:04 too. When you get around people, they're always
01:18:04 --> 01:18:07 negative. They're always looking at the bad end
01:18:07 --> 01:18:11 of the stick and the ugly side of things. that
01:18:11 --> 01:18:16 energy, it can pull you down. That is contagious.
01:18:16 --> 01:18:19 So now if you're around somebody who's the complete
01:18:19 --> 01:18:21 opposite and they're seeing things, some people
01:18:21 --> 01:18:23 might say, oh, yeah, they bug me. You know, they're
01:18:23 --> 01:18:26 just too happy or whatever. But it's contagious.
01:18:26 --> 01:18:29 It can rub off on you. I think it just awakens
01:18:29 --> 01:18:31 something that's in everybody that they feel
01:18:31 --> 01:18:35 like, you know, this. Yeah. Why am I? always
01:18:35 --> 01:18:37 looking at it this way. I mean, there's something
01:18:37 --> 01:18:39 to be happy about or I should appreciate this
01:18:39 --> 01:18:42 or I should have a bit more gratitude here. Yes,
01:18:42 --> 01:18:45 just like a smile. Do you ever walk past somebody
01:18:45 --> 01:18:47 that has a smile and all of a sudden you have
01:18:47 --> 01:18:51 a smile? Yeah, yeah, you can. You see them smiling.
01:18:51 --> 01:18:54 They have a great smile and then you smile because
01:18:54 --> 01:18:57 they have a great smile. So simple something
01:18:57 --> 01:18:59 that simple and it could change somebody's day.
01:18:59 --> 01:19:02 Something that small can really change somebody's
01:19:02 --> 01:19:05 day. Because I have to be honest, I've never
01:19:05 --> 01:19:07 walked past somebody that has a frown on their
01:19:07 --> 01:19:10 face and been like, well, geez, now I better
01:19:10 --> 01:19:14 put a frown on my face. It actually makes me
01:19:14 --> 01:19:16 put a smile on my face. It actually makes me
01:19:16 --> 01:19:20 put a smile on my face because I'm like, hmm.
01:19:20 --> 01:19:23 I hope they have a better day. So that's probably
01:19:23 --> 01:19:25 what these readers or they came across. They
01:19:25 --> 01:19:27 don't even have a chronic illness, but I guess
01:19:27 --> 01:19:31 your you peppered that I'm sure it's in your
01:19:31 --> 01:19:34 in your writing and in your story is the optimism
01:19:34 --> 01:19:36 or the outlook that you still have in the upbeat
01:19:36 --> 01:19:39 that you still have and the joy that you still
01:19:39 --> 01:19:41 carry. And it comes across and people that are
01:19:41 --> 01:19:46 reading it and probably. them reading what you
01:19:46 --> 01:19:48 have been through and to still have that outlook
01:19:48 --> 01:19:50 and that spirit. They're like, wow, you know,
01:19:50 --> 01:19:52 this is a bit of an uplifter. I needed that.
01:19:52 --> 01:19:55 That's a good. I need a double dose of that.
01:19:56 --> 01:20:00 I hope so. Yay. But the interesting thing I have
01:20:00 --> 01:20:04 to tell you is since I wrote this book, I have
01:20:04 --> 01:20:08 been contacted by four different people that
01:20:08 --> 01:20:13 have both ocular melanoma and MS. An ocular melanoma
01:20:13 --> 01:20:17 is six in a million people get it. Wow. Six in
01:20:17 --> 01:20:21 a million. Wait, six in a million? Six in a million.
01:20:23 --> 01:20:26 So yeah, let that sink in. And I've met four
01:20:26 --> 01:20:30 people who have both like I do. So there's five
01:20:30 --> 01:20:35 of us right there. And that can also see that,
01:20:35 --> 01:20:38 that's really your perspective and how you look
01:20:38 --> 01:20:40 at things. And I'm sure maybe there was a time
01:20:40 --> 01:20:44 where you're feeling like, what are the, you
01:20:44 --> 01:20:47 know, that's one of those things where it would
01:20:47 --> 01:20:50 be real easy to say when you find out the statistics,
01:20:50 --> 01:20:55 six in a million, and I get it, what the? I mean,
01:20:55 --> 01:20:59 it's hard. That's it. Oh, yeah, you can look
01:20:59 --> 01:21:07 at like, wow, I'm just a special specimen to
01:21:07 --> 01:21:11 have that. And then to have that. But also the
01:21:11 --> 01:21:14 you can you can take that one way or the other.
01:21:14 --> 01:21:16 But then they have that. And then how you mentioned
01:21:16 --> 01:21:21 that the 50, 50, 50, 50 chance of surviving and
01:21:21 --> 01:21:25 you ended out. making it that the cancerous cells
01:21:25 --> 01:21:29 are now dormant and you're not giving them a
01:21:29 --> 01:21:33 place at the table anymore? Nope. Do not want
01:21:33 --> 01:21:37 them anywhere near my table. That's awesome,
01:21:38 --> 01:21:40 but I did not know. See, that's a striker right
01:21:40 --> 01:21:44 there. And you've met four, so there's five.
01:21:44 --> 01:21:47 Well, four that have both. I've met a lot of
01:21:47 --> 01:21:50 people that have ocular melanoma. I mean, by
01:21:50 --> 01:21:52 a lot of people with ocular melanoma, we have
01:21:52 --> 01:21:57 groups on Facebook. So I know a number of people
01:21:57 --> 01:22:00 with ocular melanoma, but what are the chances
01:22:00 --> 01:22:04 that they have both like me, ocular melanoma
01:22:04 --> 01:22:08 and MS? That was what was really crazy because
01:22:08 --> 01:22:11 I'm thinking, okay, six in a million, and I know
01:22:11 --> 01:22:15 four others that have... the same things I have.
01:22:16 --> 01:22:19 And you mentioned before, with the long walks,
01:22:19 --> 01:22:22 do you still take those long walks, but you're
01:22:22 --> 01:22:24 just a bit more precautious? Like just say, for
01:22:24 --> 01:22:26 instance, things that you want to do if you want
01:22:26 --> 01:22:29 to get out in nature, you want to get on a bobsled
01:22:29 --> 01:22:31 and let the wolves pull you around the snow.
01:22:32 --> 01:22:35 Oh, that would be awesome. I would love to do
01:22:35 --> 01:22:39 that. Is it safe to say you take precautions
01:22:39 --> 01:22:42 with whatever it is that you're doing? I do and
01:22:42 --> 01:22:45 I do use a rollator if I know let's say we want
01:22:45 --> 01:22:49 to go to an outlet mall and I want to be able
01:22:49 --> 01:22:53 to walk around I will take this rollator and
01:22:53 --> 01:22:57 if I get super tired from let's say my legs are
01:22:57 --> 01:22:59 just like okay we're not doing this anymore the
01:22:59 --> 01:23:02 rollator actually you can flip it around and
01:23:02 --> 01:23:05 it can be a transporter which is like a wheelchair
01:23:05 --> 01:23:07 but it has a seat and somebody then can push
01:23:07 --> 01:23:12 you Okay, so be out walking around and then as
01:23:12 --> 01:23:14 long as you have somebody there I guess I would
01:23:14 --> 01:23:18 I would hasten to ask somebody That is out shopping
01:23:18 --> 01:23:21 and I was by myself. Do you mind just pushing
01:23:21 --> 01:23:25 me? But if I had somebody one of my clan with
01:23:25 --> 01:23:27 me I would say okay, I'm gonna sit down now.
01:23:27 --> 01:23:33 Can you push me? I Don't think it'd be very nice
01:23:33 --> 01:23:36 to go up to somebody listen my legs have given
01:23:36 --> 01:23:40 out on me do you mind if you push me around these
01:23:40 --> 01:23:42 are the stores i want to go to just pamper me
01:23:42 --> 01:23:46 a little bit right exactly you can take me to
01:23:46 --> 01:23:49 get my my feet massaged you don't mind waiting
01:23:49 --> 01:23:54 right that they have those those options and
01:23:54 --> 01:23:58 those type of devices and tools for people that
01:23:58 --> 01:24:00 are dealing with that's that's that's pretty
01:24:00 --> 01:24:04 cool too because years ago you know you had something
01:24:04 --> 01:24:07 whatever it was and it was pretty much just put
01:24:07 --> 01:24:09 a bandaid on it and drink some water and pray
01:24:09 --> 01:24:14 to the gods that you're healed. Exactly. Yeah.
01:24:14 --> 01:24:19 You have to pray real hard. But it is nice that
01:24:19 --> 01:24:23 there are so many options available because if
01:24:23 --> 01:24:25 a cane doesn't work for you, you push the roll
01:24:25 --> 01:24:29 later. As long as your legs will let you. Again,
01:24:29 --> 01:24:31 you get tired and you're with your tribe. Then
01:24:31 --> 01:24:35 you just say, hey, I'm going to sit down. Let's
01:24:35 --> 01:24:38 go. Let's go have a drink or have something to
01:24:38 --> 01:24:41 eat and let's see if my legs will recuperate.
01:24:41 --> 01:24:45 and if not then okay well push me around a little
01:24:45 --> 01:24:47 bit more if you want or push me to the car and
01:24:47 --> 01:24:51 i'll wait for you i mean you have to be flexible
01:24:51 --> 01:24:59 i definitely agree wow but the way everything
01:24:59 --> 01:25:06 played out you were taxed once twice three times
01:25:06 --> 01:25:09 who's counting, but you still have this this
01:25:09 --> 01:25:13 optimistic outlook. You wrote this memoir to
01:25:13 --> 01:25:17 share with your your boys to let them in on some
01:25:17 --> 01:25:21 of the behind the scenes of what was going on.
01:25:21 --> 01:25:24 And this was for them. But in the process, other
01:25:24 --> 01:25:28 people have. have read it and it touched them
01:25:28 --> 01:25:30 in one way or the other. People that are dealing
01:25:30 --> 01:25:32 with their own illnesses, people that aren't
01:25:32 --> 01:25:34 even dealing with their illnesses, but maybe
01:25:34 --> 01:25:38 just dealing with their outlook on life or maybe
01:25:38 --> 01:25:41 a narrow minded point of view. And it's broadening
01:25:41 --> 01:25:43 their perspective a little bit and giving them
01:25:43 --> 01:25:47 something more to aspire to or something more
01:25:47 --> 01:25:50 to look forward to. And the glass, the glass
01:25:50 --> 01:25:54 can always be. half empty or it can always be
01:25:54 --> 01:25:56 half full. Whichever you prefer, it's going to
01:25:56 --> 01:26:01 be that way for you. And it really has been a
01:26:01 --> 01:26:04 pleasure and a joy to speak with you, Rachel.
01:26:04 --> 01:26:07 And you've already graced us with a good amount
01:26:07 --> 01:26:11 of time. And I appreciate your words, your joyful
01:26:11 --> 01:26:15 spirit that you have. And to me, I mean, listening
01:26:15 --> 01:26:19 to this, this is something that I can see and
01:26:19 --> 01:26:23 take note of my own self, where I tend to maybe
01:26:23 --> 01:26:26 bicker, cry, complain about the smallest of things,
01:26:27 --> 01:26:29 but there's so much to be grateful for. There
01:26:29 --> 01:26:32 really is. I'm going to link. In the show notes,
01:26:32 --> 01:26:35 I'm going to link your information so people
01:26:35 --> 01:26:37 can be pointed to your book if they want to find
01:26:37 --> 01:26:40 your book and if they want to read your memoir.
01:26:41 --> 01:26:42 And if you'd like to leave off with any other
01:26:42 --> 01:26:46 words and you'd like to just share something
01:26:46 --> 01:26:49 before we wrap it up. Well, thank you for having
01:26:49 --> 01:26:53 me on. And I do want to say I feel like I am
01:26:53 --> 01:26:56 lucky. I know people would shake their heads,
01:26:56 --> 01:26:59 but I think I was lucky that I got MS when I
01:26:59 --> 01:27:05 was 17 because I then found out many years later
01:27:05 --> 01:27:10 that I had ocular melanoma and had the two not...
01:27:10 --> 01:27:15 I didn't have MS. I may never have known I had
01:27:15 --> 01:27:18 ocular melanoma until it was too late. So I think
01:27:18 --> 01:27:22 I'm the lucky one. I know it sounds funny, but
01:27:22 --> 01:27:24 I just think that I was. That was almost like
01:27:24 --> 01:27:31 the warning. It was to prepare. Because with
01:27:31 --> 01:27:35 MS, you know that you need to keep on top of
01:27:35 --> 01:27:38 stuff. So by keeping on top of stuff, even being
01:27:38 --> 01:27:41 on medication, okay, but I want to try a different
01:27:41 --> 01:27:44 medication, so let's go do that. If I was okay
01:27:44 --> 01:27:48 with status quo, I would not be here. I'm almost
01:27:48 --> 01:27:53 certain I would not be here. It was almost as
01:27:53 --> 01:27:56 if something said, because there were two different
01:27:56 --> 01:27:58 oral medications out there was gelinia and tech
01:27:58 --> 01:28:02 federa and i wanted to try gelinia first and
01:28:02 --> 01:28:05 that's the one that i had to go see an ophthalmologist
01:28:05 --> 01:28:07 if i would have said first i want to do tech
01:28:07 --> 01:28:10 federa there would have been no ophthalmologist
01:28:10 --> 01:28:13 involved and so i would have kept going on with
01:28:13 --> 01:28:17 the coincidence or was that divine intervention
01:28:17 --> 01:28:23 somehow some way yeah so I try never to look
01:28:23 --> 01:28:28 at any of my journeys negatively because it's
01:28:28 --> 01:28:32 got to be something important that led me to
01:28:32 --> 01:28:35 the next. Blessings to you and yours, Rachel.
01:28:35 --> 01:28:39 Thank you again so much. Thank you. From a kick
01:28:39 --> 01:28:43 in the head to a kick in the ass. That's the
01:28:43 --> 01:28:47 name of Rachel's memoir. And you can find her
01:28:47 --> 01:28:51 links in the show notes. I hope you enjoyed this
01:28:51 --> 01:28:55 conversation and I appreciate you all spending
01:28:55 --> 01:28:58 some of your day with us I say this often after
01:28:58 --> 01:29:02 an episode but it comes from a sincere place
01:29:02 --> 01:29:05 it was a delight it was a treat it was refreshing
01:29:05 --> 01:29:09 to listen to Rachel who having gone through the
01:29:09 --> 01:29:12 hospital visits and dealing with the body that
01:29:12 --> 01:29:15 breaks down sporadically struggling to just walk
01:29:15 --> 01:29:19 at times The surgeries and therapy treatment
01:29:19 --> 01:29:22 having your eyes sewn shut and along with raising
01:29:22 --> 01:29:26 the family. Let's not forget But her optimism
01:29:26 --> 01:29:30 was something that she held on to it wasn't stripped
01:29:30 --> 01:29:35 away by any of it multiple sclerosis and Ocular
01:29:35 --> 01:29:39 melona her diagnosis. They didn't define who
01:29:39 --> 01:29:42 she was There's two things you can do when life
01:29:42 --> 01:29:46 happens to you when life life's you can get bitter
01:29:46 --> 01:29:51 or you can get better Rachel she's chosen the
01:29:51 --> 01:29:55 latter she's still living she's laughing she's
01:29:55 --> 01:29:59 celebrating life with the wonderful support from
01:29:59 --> 01:30:03 both of her boys and her loving husband Rachel
01:30:03 --> 01:30:05 once again thank you for sharing some of your
01:30:05 --> 01:30:11 journey with us you are a giant amongst us and
01:30:11 --> 01:30:15 one more time before we rock out of here I appreciate
01:30:15 --> 01:30:18 you Every one of you who has been a part of the
01:30:18 --> 01:30:22 show, every one of you who tunes into the show
01:30:22 --> 01:30:26 and sharing some of your day with us, you know
01:30:26 --> 01:30:29 how to reach out to us. The links will be in
01:30:29 --> 01:30:31 the show notes. Let me know how you're feeling,
01:30:31 --> 01:30:34 how you're doing, how life has been and your
01:30:34 --> 01:30:38 side of the map. This is a two -way conversation.
01:30:38 --> 01:30:42 I always enjoy hearing back from you. We're here
01:30:42 --> 01:30:44 to grow together. We're here to build together.
01:30:45 --> 01:30:48 we're here to take ownership of our lives and
01:30:48 --> 01:30:52 make things happen and understand that we have
01:30:52 --> 01:30:56 the ability and the power to write and live our
01:30:56 --> 01:31:00 own script so here's to a new year here's to
01:31:00 --> 01:31:04 a new day we're gonna catch up and do this again
01:31:04 --> 01:31:10 real soon you be safe out there you be sane and
01:31:10 --> 01:31:13 be the change you wish to see let us leave off
01:31:13 --> 01:31:17 with a little reminder that if you would like
01:31:17 --> 01:31:20 to be a part of the show and share your story
01:31:20 --> 01:31:23 or even the story of someone in your life that
01:31:23 --> 01:31:27 has impacted you in a positive way you could
01:31:27 --> 01:31:31 always reach out to us via email we'd be happy
01:31:31 --> 01:31:38 to connect until next time and very soon peace
01:31:48 --> 01:31:57 Looking for a sign to know I'm on the right road
01:31:57 --> 01:32:02 Ain't seen no sign since Jericho