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Why Rachel Sindaco Says She’s Lucky to Have MS | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everyone
0:03
welcome back to the Eye Believe Podcast
0:05
I'm Megan and I have an amazing guest today
0:08
we have Rachel Sindaco
0:09
and what's really special about Rachel is
0:12
she has just written a book
0:13
and she's gonna tell us her story
0:14
and then tell us all about her book
0:16
welcome Rachel
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hi thank you
0:19
so I started writing a book this past January
0:24
and it's called
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from a kick in the head to a kick in the ass
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my involuntary journey with Multiple Sclerosis
0:30
and Ocular Melanoma
0:32
I decided to write the book for my boys
0:35
I was only gonna write it for them
0:37
just so that they had an idea the
0:39
the weird things that went on with their mom
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as they grew up
0:43
because I had multiple sclerosis the entire time
0:46
of their lives
0:47
and then I got ocular melanoma 14 years ago
0:53
so after people read my book
0:56
they said you really should publish it
0:58
and so I was like oh
1:00
but not many people know all of my circumstances
1:04
and I don't know that I want to get out of this bubble
1:06
that I've made for myself
1:08
I decided to do it
1:10
and I let the world know that I am not drunk with MS
1:14
and that just because my my balance is off
1:18
that's both multiple sclerosis and ocular melanoma
1:21
so when I wrote my book I
1:24
I had the the drawing
1:26
the cover with the eye patch
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obviously that's for ocular melanoma
1:30
and also the cane that's for both of them
1:33
ocular melanoma and multiple sclerosis
1:35
and then the orange tie is for multiple sclerosis
1:39
I am so glad I did this and
1:42
I have found out that there are several other people
1:46
that have both ocular melanoma and multiple sclerosis
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they have reached out to me and said
1:51
I also have it
1:52
I think one person had multiple sclerosis first
1:57
and then found out they had ocular melanoma
1:59
and the other two actually were vice versa
2:01
they had ocular melanoma first
2:03
and then multiple sclerosis
2:05
I found out about my ocular melanoma
2:09
this is a fun story I was trying to change medications
2:13
from my multiple sclerosis medication
2:16
and I they sent me to an ophthalmologist
2:19
so as I'm there I have had optic neuritis with um
2:23
my multiple sclerosis
2:26
and they kept looking and sending in other doctors
2:29
and I'm like guys
2:30
it's just optic neuritis no big deal
2:32
they're like well
2:33
we want to send you to a retina specialist
2:35
fine just another
2:37
another visit fine
2:39
I go there eight hours later
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I heard tumor mass
2:44
all that kind of stuff being thrown around
2:46
I was by myself
2:48
passed out there
2:51
and um
2:52
yeah it was
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it was hard to go by yourself to these things
2:57
especially when you're like
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it's optic neuritis it's not a big deal
3:00
well they sent me off to Wills Eye Hospital
3:03
and lo and behold I had ocular melanoma
3:06
and they they sent me back home they said
3:09
deal with your kids
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make sure they have somebody to watch them
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cause they were young and went home four days later
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had to go back out to have my plaque therapy done
3:20
so I spent three days in a nursing home
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or not a nursing home they call it a retirement center
3:27
but my husband was with me
3:29
and it was actually a nice place too
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it was two bedrooms two bathrooms
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a living room a dining room
3:35
a kitchen
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cause
3:36
they didn't want my husband to sleep in the same room
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because you're radioactive
3:41
but he was like no
3:43
I'll stay in there with you
3:44
and my eye was a sewn shut
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so he had to read to me
3:48
and you never think about your eye being sewn shut
3:52
when you open your eyes in the morning
3:53
they both open and they try to open
3:55
and then the pain that would jolt through me
3:57
I was like oh
3:58
this is not good
4:00
so I just for four days slept with my
4:03
or just stayed there with my eyes shut
4:05
I refused to open them cause it was painful
4:08
oh I bet
4:09
so you thought that it was optic neuritis
4:12
what is optic neuritis it is
4:15
I believe it's an inflammation of your optic nerve
4:19
and I always had it in my left eye
4:21
so it would do the same thing as ocular melanoma does
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it starts to gray out stuff
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cause my ocular melanoma is on my optic nerve
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so I have no I have no vision
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central vision I only have peripheral vision
4:37
so I just thought it was the same thing
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it was things got dark gray
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and I was like oh
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the optic neuritis is back
4:45
and thank goodness I was switching medications
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cause I don't know that I'd be here
4:49
talking to you if this hadn't been realized
4:52
if I would have just gone along and said
4:54
optic neuritis I'm not worrying about it
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I'm not going to the doctor
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well we all know that ocular melanoma is
5:01
can be
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well it is deadly
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so yeah
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yeah it can spread if you don't catch it
5:06
so that's amazing
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so you were having the symptoms
5:09
same ones you had before and the only reason you went
5:11
is because you needed to change your MS medication
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and then they were like oh
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this is something different
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and you said no
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it's not I know what this is
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so
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what a shock like
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I can't even imagine oh
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it was it was a shock
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and now any any changes in anything
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I do not try to say oh
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well it's this
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no I just go to the doctor
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that's smart I'm not a doctor
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and I don't know why I thought oh
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it's the same thing
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yeah I mean
5:40
it makes sense to me you have the same symptoms
5:42
you're like I know what this is
5:43
I've been doing this you know
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and I think when you have a chronic illness
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like multiple sclerosis
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you probably have stuff all the time
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that's coming up that you're
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you know it's
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it's the multiple sclerosis
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so you know
5:53
you're probably not looking for something else
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because especially those kind of things and
5:58
and autoimmunes and stuff there's so many symptoms
6:01
probably feels like it's always something new
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that's true you just don't know
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because with multiple sclerosis
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you get these um
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we used to call them UBO's
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unidentified bright objects
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and I would have them on my spine
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I had them in my brain
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so you never know what it was gonna affect
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I'm just lucky I have MS again
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I wouldn't be here talking to you
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yeah and I think that's like
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such a great takeaway that you're lucky you have MS
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having MS could have very well saved your life
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and I don't think you hear that very often
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no you don't
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so you did the bracytherapy
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and how many years ago was that
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14
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since you've had that done
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have you had to do any other medications or treatments
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or has that been enough
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that has been enough
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they wanted me to come in every three months and get a
6:50
an injection in my eye which I don't I
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I feel for everybody that has to get that done
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I could never get over that
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I had to get that done three or four times
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and they realized it wasn't working
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and to be honest I don't even know why we were doing it
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I just felt I I followed along
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they said come in
7:08
I was like tell me the time
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I will be there
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I don't know many people that enjoy going in
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and having a needle stuck in their eye
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there's oh yeah
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I could not get over that
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and I was so thrilled when they said to me
7:21
you don't have to get it done anymore
7:23
I think I threw a party I don't know
7:26
that's a great reason to have a party
7:28
I love that exactly yeah
7:30
because all of your life you're told
7:32
don't put anything in your eye
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be careful shield your eyes
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don't don't ever do it
7:37
and then they come at you with a needle and
7:40
and you know
7:40
somebody's holding your arms down
7:43
it's just not natural but it
7:45
it helps I mean it
7:46
it does help people
8:19
you said you wrote the book in January
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when did you publish
8:23
at the end of July 1st of all congratulations
8:25
that's very exciting thank you
8:27
and where all can people find the book
8:31
Amazon and Barnes and nobles
8:34
and it's also
8:35
again
8:35
not real familiar with publishing and stuff like that
8:38
but Amazon you can get it on KDP too
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I don't know what that means
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but uh and where you just have to be a member unlimited
8:48
and then you can read the book
8:51
so I'm gonna assume KDP is Kindle because OK yes OK
8:56
Kindle Kindle
8:57
I don't have a Kindle so that's not in my world
9:00
I'll look it up real quick
9:01
KDP Amazon
9:03
yes KDP is Kindle
9:05
Kindle Direct Publishing so if you have a Kindle
9:07
you can find it on Kindle
9:09
Amazon Barnes and noble
9:10
we will post an Amazon link from um
9:13
A Cure In Sight we do an affiliate program
9:14
so if you buy from the A Cure In Sight link
9:17
you're supporting Rachel
9:18
and you're also supporting A Cure In Sight
9:19
so if you'd like to use our link
9:21
it does not take anything away from Rachel
9:23
it's Amazon gives us an extra little commission
9:25
just as an affiliate
9:26
so you can help us both if you do that
9:28
then what about where can people find you
9:30
on socials do you have websites or socials
9:33
it's just my my name Rachel Sindaco on Facebook
9:37
Instagram
9:39
that's perfect
9:40
so the book came out this summer
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it's available Amazon
9:43
Barnes and noble everyone go grab a copy
9:46
and then Rachel
9:47
what else would you like to tell the community
9:50
I would like to tell the community
9:51
to make sure you continue to go to your appointments
9:56
do all of your follow ups
9:58
make sure you get your scans
10:00
it is so important to
10:02
my tagline is keep your eye on the ball you
10:06
I don't ever want to miss anything because I know
10:09
I have known people that have had this for 25 years
10:12
and you think when you're that far out of it you're
10:15
you're fine and
10:16
and then it can come back with a vengeance
10:19
it can spread to your liver
10:21
your lungs
10:22
it can just wreak havoc when you least expect it
10:25
so stay on top of it
10:27
yeah that is so important
10:29
and definitely something that patients
10:31
as well as their family members
10:33
keep getting those dilated eye exams
10:35
what about your kids what do they think of all of it
10:38
well I didn't tell them in the very beginning
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in fact um
10:44
they they were young
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I think they were like eight and 13
10:48
and then after a while
10:52
it just came out they
10:53
oh and
10:54
I believe it was
10:55
when they were asking if we know anybody with cancer
10:58
I said
10:59
me I have eye cancer
11:01
and I worried about my youngest cause he has blue eyes
11:05
my older one has brown eyes like his dad
11:07
but I worry about my younger one cause he's fair skin
11:10
like me and so I kept
11:13
I keep telling everybody
11:14
wear your sunglasses while you're out um
11:17
even when you're driving in a car
11:19
to make sure you have sunglasses on
11:20
or pull the visor over to the left cause they say that
11:25
you don't really get it from the sun
11:26
but you may as well protect your eyes anyway
11:28
wear glasses
11:30
and it doesn't hurt to put on sunglasses
11:32
cause it can protect you from other things
11:34
yeah that's very true
11:36
good eye safety tips
11:38
in fact
11:38
they also tell you when you're monocular
11:41
cause I I kind of am monocular
11:43
my left eye with it being on my optic nerve
11:46
I can't see central vision
11:49
I can only see peripheral
11:51
and they want you to wear just glasses
11:53
so that you protect your your good eye
11:56
and today I was messing around with the can of soda
12:00
but I couldn't open it up
12:02
so I took a knife and I jammed it
12:04
and the little
12:05
I don't know what those things are called
12:06
they open up the soda with
12:08
came flying off and zoomed past my good eye
12:12
and I was like
12:14
I could have just made myself totally blind
12:17
I need to make sure I have something on my eyes
12:20
when I do this
12:21
as soon as that happened
12:22
I just thought back to Doctor Shields
12:24
the Shields them saying you should always wear glasses
12:28
I was like man
12:30
you're right
12:32
those doctors are right sometimes
12:34
I know well
12:36
those doctors are right all the time
12:38
no they are I was kidding
12:39
but you're you're right
12:40
they are right and they
12:42
they tell you things for a reason
12:44
and even if we're not sure what the reason is
12:46
or it doesn't make sense to us
12:47
we have to trust that there's a reason
12:49
they're telling you yes
12:51
and 14 years later I had a close call
12:54
and I didn't have them on
12:56
yeah oh
12:57
and it's crazy too cause you're home
12:59
so
12:59
you probably let your guard down a little bit at home
13:01
thinking like oh
13:02
it's a safe space but it's actually probably not
13:04
because so many accidents do happen in the home
13:08
oh yes
13:09
haha yeah
13:10
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get your scans wear your glasses
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even if it's not for vision
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which most of us I think it is
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but wear them anyway and what else
13:40
enjoy life live the best life you can
13:43
that's what I keep telling myself every day
13:45
I try not to be a negative Nelly
13:47
I just want to live and get out
13:50
even if I don't feel like it
13:51
we have this one life to live
13:53
and protect yourself but enjoy it
13:56
that's perfect I think that's such a great message
13:59
and something that everybody can implement
14:01
and benefit from and it is so true
14:04
it's easy to get stuck in that like
14:06
mundane every day and it's easy to
14:08
you know say
14:08
why me and all of those things that
14:10
you know we all do for various reasons
14:12
I have it so much better
14:14
than other people with ocular melanoma do
14:17
I was lucky it got caught early and my tumor has shrunk
14:22
when you decided to start writing the book
14:26
what was the final thing that made you write it
14:28
you said you wanted to write it for the kids
14:30
but what was kind of like the
14:32
the incentive of like alright
14:33
I'm gonna sit down and do it now
14:34
I found my journals
14:36
that I kept from when I was 17 years old
14:40
when I was 17 that was when
14:41
I first got diagnosed with multiple sclerosis
14:45
so they told me to keep a journal
14:47
and I kept that through and when I was in college
14:51
the reason the title of my book is
14:53
from a kick in the head to the
14:54
a kick in the ass is when I was in high school
14:57
I played goalie for soccer and I got kicked in the head
15:01
which knocked me out and
15:02
they thought
15:03
that was the gateway to my multiple sclerosis
15:07
cause I had I suffered a concussion
15:09
and back then they didn't do anything for concussion
15:12
they said ah
15:13
just rest relax sleep
15:15
they don't tell you to sleep anymore
15:18
like just relax
15:20
don't don't fall asleep without somebody around
15:23
that was the gateway
15:24
so I started taking notes about all of my symptoms
15:28
because after that two weeks later
15:31
I couldn't walk up steps
15:32
I couldn't feel from my waist down
15:34
so they put me in the hospital for a week
15:36
and they did lumbar punctures
15:39
and they did all kinds of scans and MRIs
15:44
and they put me on steroids
15:46
which for five days that took care of
15:48
I could walk again
15:51
and so again I was journaling
15:53
and I I found my journal
15:55
and I was like okay
15:56
I'm gonna start this is
15:58
this is it
15:59
and I'm gonna start back from when I was a kid
16:01
living in Germany
16:03
because I did have also some odd things that
16:07
you know my body constantly did odd things
16:10
so I just documented everything and put it in the book
16:14
I was gonna just print it out and give it to the boys
16:18
but people are like put it on Amazon
16:20
I was like
16:21
okay
16:24
that's some great encouragement though
16:26
I mean talk about good feedback
16:28
like the world needs to hear these stories
16:30
I think that's great
16:31
the way I look at life is
16:33
I don't want to feel bad for myself
16:36
because you can look to either side of you
16:38
and somebody has it way worse than you do
16:41
people always say oh
16:42
I am so sorry that you have multiple sclerosis
16:44
and oh
16:45
then you have eye cancer and I'm like
16:48
they're not great but
16:50
there are things
16:50
way worse out there than these two things
16:54
I'm gonna manage them and I'm gonna stay on top of them
16:59
but please don't pity me
17:01
I love that and all you can do is all you can do right
17:04
that is true
17:06
so the book is out now
17:07
what kind of response have you gotten
17:10
since it's been published
17:11
cause you said there were some people that you found
17:13
with ocular melanoma that had MS
17:15
that have found you
17:16
was that through the book or was that just through like
17:18
social media it was through social media
17:21
and the book went on the other day
17:22
and I was happy to see that I had a lot of reviews
17:25
to me a lot of reviews is like 20
17:28
a lot of reviews but
17:31
especially on Amazon
17:33
and people are buying the book that I don't know
17:36
and they're leaving me reviews
17:38
and they're telling me how much it's helped them
17:41
and I try to be honest but I add humor into it
17:45
because to me I like to laugh even when I fall down
17:49
and I know people think that I'm drunk or something
17:52
I'm like it's MS and
17:54
and I never know if it's ocular melanoma or MS
17:57
that's causing my balance issues
17:59
because I have one eye that sees
18:02
one that doesn't and my left side
18:06
and it's all on my left side too
18:07
it's my left eye and my left side
18:09
so I'm kind of
18:12
I wanna fall left
18:14
that's interesting that it's all on the same side
18:18
I agree yeah
18:20
I was actually curious
18:21
other people that have ocular melanoma
18:23
and any other kind of chronic illness
18:25
does it affect one side or is it both sides
18:29
and I
18:29
I know people are always asking with ocular melanoma
18:33
do more people have it on the right side
18:34
or the left side and I never found the answer
18:38
cause nobody actually then says okay
18:40
well
18:40
the tally is this many people have it on the left side
18:43
this many on the right side
18:45
Rachel thank you so much for being on
18:47
we really have appreciated you coming
18:49
and sharing your story OM and MS together
18:52
that's such a amazing journey
18:55
and to keep such a positive outlook
18:57
so we're very grateful for you and for your time
18:59
and just sharing your story with us
19:01
thank you so much for having me on
19:03
absolutely it was our pleasure
19:05
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21:18
what you're in the mood for that night
21:21
what your comfort level is at that moment
21:23
and um we've got 5 KS coming up
21:26
the new 5 KS for 2026 are out
21:29
some of the dates have been released
21:31
so if you're looking for a
21:32
lookin' for a cure 5K near you
21:35
check out our website you'll find them there
21:37
and I think that's all for me
21:38
what do you think Rachel
21:40
we good yes
21:41
we're good thank you
21:43
alright I wish I could do the 5K
21:47
they they are fun yeah
21:48
I do encourage that yeah
21:51
I wish my my legs would argue with me
21:53
but yeah
21:54
I absolutely
21:56
but for anyone who is able
21:58
please find one and when you do sign up for a 5 k
22:01
you can um
22:02
do a team
22:03
where you can invite all of your friends and family
22:05
to come and be on your team
22:06
and if someone's not local
22:07
they can do it virtually
22:08
so there is a virtual component
22:11
and Rachel you could do the virtual one too
22:13
cause you don't actually have to run it
22:14
you just sign up
22:15
and you still get the medal and the T-shirt
22:17
all the all the swag bag stuff
22:19
and there's also the option to donate
22:21
so if you can't make any of these events
22:23
you can always go to our website and donate
22:26
and if you can't donate just share
22:28
find a post we try to engineer most of our posts
22:31
so that they're shareable
22:33
so that they're they might be asking for a donation
22:35
but please understand
22:36
that we're not asking you to fund your own disease
22:38
we're not asking
22:38
of the OM community for those donations
22:40
if you have them that's wonderful
22:43
but if you don't
22:44
share the post so that your whole community can see it
22:47
and maybe you can raise some donations
22:50
through the community so there
22:52
there's always an option to just share
22:54
if you can't do anything else
22:56
but we do hope we see you at some events
22:58
because we would love to connect
22:59
and meet more of our omies
23:01
and just see you guys face to face
23:03
alright so on that note
23:04
we're gonna end here and we will see you guys next week