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"Preparing for Eye Enucleation: What You Need to Know" · The Eye Believe Podcast

0:24
Fire drills.
0:26
We practice
0:27
because it helps us to know where to go
0:29
and what to do.
0:31
If we were to have a fire.
0:32
However, in the moment, there's a fire.
0:35
There are motions.
0:37
Fight or flight,
0:38
possibly roadblocks to plan.
0:40
And actually,
0:41
fire is very different than a drill.
0:44
Think of the patch training.
0:46
All of the things like a fire drill.
0:49
It's not going to be the same,
0:51
but it will help us all of the emotions.
0:54
And when it's time comes
0:57
more constructive as we begin to now.
1:00
Hey everybody.
1:00
Welcome back to the Eye Believe Podcast.
1:02
Today we are joined once again
1:04
by Tara Workman,
1:05
who is an ocular melanoma patient
1:07
as well as a stage
1:08
four melanoma survivor.
1:09
And she has a really interesting,
1:11
way to just talk to you guys about
1:13
how can you prepare for a enucleation.
1:15
So, Tara, I'm just going to pass it
1:16
right over to you
1:17
so you can talk to us about
1:19
what should you do
1:20
if you're prepping
1:20
for a enucleation surgery?
1:23
Oh, thank you for having me again today.
1:26
I'm so excited to be here.
1:28
this is just something
1:30
that I put together.
1:31
I am mentoring patients from Ohio State.
1:35
If you didn't,
1:37
learn that in the last episode,
1:38
you can always go back and listen.
1:40
this episode,
1:41
we're going to be diving deeper
1:42
into what I did
1:44
to prepare for the enucleation.
1:47
So I put together
1:48
this little bit of information
1:50
and just
1:51
keeping in mind that, you know,
1:53
we're all individuals here.
1:55
So what I might do
1:57
might not be what you do,
1:59
because you may have different needs,
2:02
but it
2:03
you can even
2:04
even if you take one idea away from today
2:07
to say, yes, that idea works for me.
2:10
Then then we're winning somewhere, right?
2:12
So we're going to throw out
2:14
a lot of things that I did.
2:15
But the goal is to be able
2:17
to take one thing away. Today.
2:19
If you are preparing for a enucleation,
2:21
to be able to support you
2:23
in that process.
2:25
So we'll jump right in.
2:27
I'm so excited for this.
2:28
I like I wish something like
2:29
this had existed
2:30
when I had a enucleation surgery.
2:34
yeah, this is in it.
2:35
And when
2:36
I was going into my enucleation
2:38
surgery, there wasn't anything.
2:40
So when I had asked my,
2:43
ocular oncologist about, you know,
2:46
was there a mentor program, she was like,
2:49
no, we we don't have one right now.
2:52
And I was like, well, why not?
2:53
Why not, why don't we
2:55
why don't we have one?
2:56
So it was a couple weeks
2:57
after the enucleation
2:58
where social worker gave,
3:00
picked up the phone
3:01
and gave me a call and was like,
3:02
we had a patient,
3:04
that is going to be scheduled
3:06
for enucleation.
3:07
And we wanted to see if it was okay
3:09
that we reach out
3:10
and give her your information
3:12
to be able to contact you.
3:14
So that's when I started putting
3:15
all these things together.
3:18
I mean, I already had tons
3:20
of notes in my phone, right?
3:22
I, I wake up,
3:23
I have no,
3:24
I have
3:24
like 260 notes in my phone
3:26
of where I journal
3:28
or write things down
3:29
or the things that I'm doing
3:31
throughout this whole process.
3:33
so it was really just a matter
3:34
of taking some of these ideas and,
3:36
and throwing into a presentation
3:39
so that I can have some type of system
3:42
or procedure,
3:43
like some way to monitor
3:45
what I'm talking through patients
3:47
with when I am doing that.
3:49
Mentor process.
3:52
So this is actually a picture of my
3:55
a nucleated eye that's on the cover.
3:57
So this is the I that I had removed.
3:59
You can see through the picture
4:02
some of the pigmentation that I that
4:04
I have in on the outside of my eye there.
4:08
So that was one of the things that I did
4:11
that will, we'll talk about
4:12
as we get into the presentation.
4:14
So here are some of the things
4:16
we'll talk about today.
4:17
Home environment, lighting,
4:20
some assistive technology,
4:22
patch training.
4:24
And I think you could probably,
4:27
talk about mental
4:28
health and support
4:29
in any type of coaching
4:31
in the medical field
4:33
and then prosthetics.
4:36
But first, this is at your request.
4:40
I had, throw this in there,
4:43
even though it's not part
4:44
of my presentation for others.
4:47
You said
4:47
I'd love
4:48
to see the graphs in our last episode.
4:51
So this is a graph.
4:55
when I started having floaters
4:58
that I started tracking.
5:01
And if you can see, there's,
5:03
a thin red line.
5:05
Straight line
5:06
that's going upwards and a thin
5:10
blue line.
5:11
And those are trend lines
5:12
that I added
5:13
so that you can see the trends.
5:17
the duration of the floaters is
5:20
how many minutes
5:21
it was happening throughout the day.
5:24
And the blue line,
5:25
the frequency of the floaters,
5:27
is like the amount of incident.
5:31
So like if it was one, it happened,
5:34
you know,
5:34
just when I woke up
5:35
and didn't happen the rest of the day.
5:37
And maybe it happened for 6 or 7 minutes
5:40
and then maybe it happened
5:41
four times a day,
5:42
which then
5:43
lasted a span of over 25 minutes.
5:46
So this is what I was tracking.
5:48
And you know this in this November
5:50
time frame, over here is
5:54
when I first
5:55
talked to my doctors about it
5:58
and they said it was nothing
5:59
to worry about,
6:00
and this is how often it was happening.
6:02
And then you'll see that
6:03
that gradual
6:05
increase along this line of how,
6:08
how many minutes of my day
6:10
that it was happening
6:11
and how often it was happening.
6:12
So this was my data
6:14
that I was tracking
6:15
on my own to say, okay,
6:17
there is something going on here.
6:19
Like, I,
6:20
I know that you're saying that right now
6:22
that this is not something that we,
6:24
that we are concerned about,
6:26
but look at this, look at this data.
6:28
This is what I've been doing on my own
6:30
to track myself, to see
6:32
that there's something happened in here.
6:34
So anyway, I know that's off topic
6:36
and I wasn't part of the preparing
6:39
because at this point
6:40
I didn't even a enucleation
6:42
wasn't even in my mind.
6:43
I didn't even know that I had
6:46
cancer at this point.
6:48
So this was just
6:50
this was the preview to the cancer.
6:52
And this is what led me
6:54
to kind of push forward and keep pushing
6:56
I doctors to know
6:57
that something was going on. Well.
7:00
And if you are wondering, wondering,
7:02
and want to listen to Tara's story
7:04
in depth,
7:04
where she talks about this
7:06
and talks about how she started tracking
7:08
and her journey to being diagnosed,
7:10
you can actually head to the
7:11
I believe podcast
7:12
and you can find her story there.
7:14
It's one of the more recent episodes.
7:15
It's only about a month or two
7:17
behind this one.
7:18
just for reference,
7:19
but we will link it in the show
7:20
notes of this episode as well.
7:23
All right.
7:24
So let's get started.
7:25
So home environment.
7:28
So this is one of the things
7:31
I always ask the questions right.
7:33
I don't
7:33
I don't say like
7:34
this is what you need to do.
7:36
but asking these thought
7:38
provoking questions
7:40
to the patients that I'm mentoring,
7:42
or thinking about these things
7:44
in my own
7:45
mind of the things
7:46
that I needed to do in my house.
7:48
Do your stairs have a hand handrail
7:51
or have some type of rail for you?
7:53
Doing the steps?
7:55
is there something there
7:56
that you can hold on to,
7:58
whether maybe it's a rail,
7:59
maybe it's a wall?
8:00
But thinking about those steps
8:02
in those in those first days,
8:04
can you add anything non-slip
8:07
stick grip or neon tape to your stairs?
8:11
So, I did both,
8:14
so I actually ordered this
8:16
tape from Amazon that had nonstick on it
8:20
and then also had a neon strip down
8:23
the middle.
8:24
So in the evening time
8:26
when the lights were out,
8:28
if I was walking around the house,
8:30
and I was going up and down the stairs,
8:32
I had this nonstick slip resistant,
8:36
strip on the steps with this neon tape
8:39
to provide me a better visual.
8:42
One of the things where
8:44
we walked around the house
8:46
my husband, me, my kids,
8:48
and we looked at are the pathways
8:51
clear inside
8:52
and outside of the house
8:53
of tripping hazards.
8:55
So one of the things was
8:58
dog toys in my living room, actually.
9:01
So I have a puppy and
9:03
and actually we started to train my dog.
9:06
My, my daughter is in animal management.
9:09
They started to train my dog
9:11
to put their
9:12
own toys away in their bucket.
9:14
that would have been a tripping
9:16
hazard for me,
9:17
you know, in my blind side.
9:19
just thinking about,
9:21
are there
9:22
things that stick out around corners
9:24
or around couches
9:26
or around your bed, places that are high
9:29
traffic, areas
9:31
that could cause you to trip,
9:33
that you might not see
9:35
unless you know your
9:37
your focus is in a different area?
9:41
dark doorways at night.
9:44
I know one of the things that,
9:46
I had read about or listened to on
9:49
the podcast
9:50
is you might have some bruises
9:53
on your side,
9:54
on your shoulder
9:55
from bumping into the walls.
9:58
so one of the things I did
10:00
is I ordered some glove strap right on
10:03
in all my doorways, and it was eye level.
10:06
It was actually,
10:07
from around the top of my head
10:10
to probably mid arm length,
10:13
where I put a strip
10:15
through all my doorways.
10:17
So walking in and out of the doorways
10:19
in the evening times,
10:20
I had this glow strip.
10:21
Even during the days, it's just a marker.
10:24
You know, that visual marker
10:26
of where
10:26
those doorways are
10:27
just kind of like your
10:28
your hazard zone, right.
10:30
to help you.
10:31
And that doesn't
10:33
let me preface with this.
10:34
That doesn't prevent
10:35
you from, from sometimes
10:37
bumping the wall,
10:38
but it's it's helpful in
10:41
that if you're doing it
10:42
in the evening time
10:43
and it's dark
10:44
and there's less light for you,
10:46
some of those things that can help you
10:48
in those initial stage stages
10:50
when your body is, is adjusting
10:52
to monocular vision,
10:55
are your end
10:56
tables on your unaffected eye side?
11:00
So I, I,
11:01
you know,
11:01
you think of go to reach for a cup.
11:05
you know, initially after your surgery,
11:10
you know, turning, turning your eyes,
11:13
you get some, some pain there.
11:16
so I made sure,
11:18
you know, I moved my furniture around,
11:21
so I used to have
11:24
my coffee table to the right side.
11:28
I had my art, right, I removed
11:30
I switched my furniture around
11:32
and put my coffee table to my left side.
11:36
So when I was reaching
11:37
for the glass or a cup,
11:40
if I'm sitting and watching TV
11:41
or if I put my computer there,
11:43
they are working at night
11:45
when I'm reaching for something,
11:47
I, I have it on my sighted side
11:49
so that
11:50
that was helping me
11:52
with not knocking things over.
11:54
When you reach for things or just having,
11:57
you know, that function of being it
11:59
to my, my sighted side,
12:01
is you're
12:02
seeding in a
12:03
location with the blind side to the wall.
12:06
So something that I found out
12:08
really quickly is I had,
12:12
my blind side to a high traffic area.
12:16
and this was in my living room.
12:21
So somebody would walk
12:23
from the downstairs up, and, man,
12:26
I would have the be scared out of me
12:29
because all of a sudden, somebody,
12:31
like, right up on me.
12:33
And I had no idea that they were coming.
12:35
And I don't know if
12:36
that has ever happened to you,
12:39
but it can sometimes sneak up on you.
12:42
So it happens to me all the time.
12:44
Yeah, it's really all the time.
12:45
And I jump out of my freaking skin.
12:48
Yeah.
12:50
yeah.
12:50
So, I mean, it takes an adjustment,
12:53
you know? It's it's it's not as bad now.
12:56
It's you get adjusted to it.
12:57
But in the beginning,
12:58
it was something that really startled me.
13:00
and then I also positioned myself
13:04
in meetings
13:05
at work
13:06
where the blind side
13:07
would be to the wall.
13:09
So when we're talking
13:09
about our blind side
13:10
to the wall
13:11
versus to this open area
13:13
where there's high traffic,
13:14
so for me, in a meeting,
13:17
I go into my meetings early
13:19
and I always pick the seat
13:21
with my blind side to the wall.
13:23
So that way I don't feel like
13:25
I have a person
13:27
over here
13:28
that I even know I'm not ignoring them.
13:30
Sometimes it feels like I don't see them.
13:33
So they're they're,
13:35
you know, it's different in a meeting.
13:37
Right?
13:37
So when I'm surrounded
13:39
at a conference table.
13:40
So I take that
13:41
same like blind side to the wall.
13:43
And I also use it in work
13:46
that when I show up at meetings,
13:48
I show up a few minutes early
13:50
just so I can pick my seat
13:52
or when I'm in a restaurant,
13:55
I always will pick the side of the booth
13:58
where my blind side
13:59
is to the wall instead of to the server
14:03
that's coming up
14:04
to the side of the table,
14:05
so that blind side to the wall
14:08
part can go.
14:09
Not just your home environment,
14:11
but thinking about
14:12
once you are start like after you've had
14:15
your eye removed
14:16
and you're going out into the community.
14:18
That's just a tip
14:19
that can help you everywhere.
14:21
Really, right?
14:22
That,
14:23
that we can put
14:24
that blind side to the wall and it
14:26
and it helps
14:27
us in our social interactions as well.
14:31
This is genius.
14:34
additional tips to prepare safety staff,
14:37
making sure, you know,
14:39
you remove the rugs
14:40
that have the ends
14:42
that could be tripping hazard
14:44
or maybe don't remove the rugs,
14:46
but maybe you have
14:47
some kind of sticky stuff that puts the,
14:50
the tips of the rugs down.
14:52
I know that that was
14:54
one of the things that tripped me up
14:56
a little bit.
14:58
purchasing contrasting
15:00
colored cups for hot liquids,
15:04
light cups, dark liquid.
15:06
So that way, you know,
15:08
you're pouring your coffee,
15:09
you got a coffee pot in the morning,
15:11
and you're,
15:12
you know,
15:12
if you got a black inside of your coffee
15:14
and you're pouring your coffee
15:15
out of your coffee pot.
15:16
Now, some people have Keurig now,
15:18
so it doesn't really matter.
15:19
But if you're a coffee pot user,
15:21
which my husband and I
15:23
use coffee pots on the weekends
15:25
during the week, it's secure
15:26
and because we're drinking coffee
15:27
at different times.
15:29
But, you know, having that contrasting
15:33
liquid in your cup,
15:35
I had my husband, he blesses.
15:39
So he did awesome with this,
15:41
but we had a set of bushes
15:44
that sometimes would get crazy growth.
15:46
And the,
15:47
the bush
15:49
bushes would go out into our walkway.
15:52
And it's never actually been a big deal,
15:55
because I just love the,
15:57
the growing and the
15:58
the nature and all of that.
15:59
But now when I'm walking up from
16:04
my groceries or from the hospital
16:06
or the doctor's appointment
16:07
or whatever it is, it's sometimes those
16:13
branches that are there might
16:15
be sticking out and I might not see them
16:18
or realize how close they are to me.
16:21
So we always are making sure
16:23
that those bushes around
16:25
all of our walkways outside are trimmed,
16:28
which I think is very important,
16:31
especially like in the evening time,
16:33
if you're, if you're walking in.
16:34
So if you have any bushes around
16:36
your walkways,
16:37
that's, it's
16:38
a great way to stay
16:39
safe is cutting those,
16:42
oven mitts of course we, we all have.
16:45
We all have, oven mitts. Right.
16:47
but for me, I,
16:51
I actually never use them on both hands.
16:54
I would just grab with one hand
16:56
and sometimes pull things out.
16:58
I now I'm a little bit safer about it.
17:01
Using both both hands.
17:03
and sure, you have long
17:05
handled brushes with sharp objects.
17:09
I don't know if you.
17:10
Have you ever cut yourself yet on.
17:12
I chopped the tip of my finger off
17:14
about three months
17:15
after I lost my vision, so.
17:17
Yeah. Yeah.
17:19
So I have this potato slicer,
17:22
and you, like, do one of these grates.
17:25
On the. Potatoes.
17:26
That's what I did.
17:27
Yeah, I did the finger up.
17:29
Ice right
17:30
the top of my finger
17:32
slice right off blood everywhere.
17:34
I mean, it was it was terrible.
17:36
So like not just the knives
17:38
but you know, ensuring you
17:39
have you know,
17:40
you're using my husband's like you're.
17:42
Never cutting vegetables again.
17:46
yeah.
17:47
Right.
17:47
That's going
17:48
to work because I know you're not quite.
17:50
Yeah, yeah, yeah.
17:51
Nice try.
17:53
I like that you're trying to keep me.
17:54
Safe, but.
17:56
Well, there's also like a
17:57
it's like a mitt.
17:58
You can get like, a glove.
18:00
And it's actually like a stainless steel.
18:02
Like, like strongly knitted glove.
18:05
I don't even know exactly what it is,
18:06
but it's specifically made to
18:08
to block a knife
18:09
or to block a greater block
18:11
a shredder or whatever you're using
18:13
so that you can't just
18:14
accidentally get too close and shave.
18:16
Or chop. Or whatever.
18:18
so that might be something to check for.
18:20
you know, the Amazon place.
18:23
Yeah.
18:23
so non-slip mats and and showers
18:28
and and baths.
18:29
so this to me is, is super important.
18:33
I'll tell you about
18:35
an incident I had actually this last week
18:38
where I think about when you step,
18:41
and, I mean, it
18:42
actually wasn't in a shower or bath,
18:43
but where you step
18:45
and you don't step far enough,
18:47
or you step too close
18:49
because your depth perception is off.
18:51
So we have a boat.
18:52
And this past week,
18:54
maybe a week and a half ago,
18:56
I went to step from the boat to the dock
19:00
and I thought it
19:01
was, closer than it was.
19:03
And I missed the dock.
19:06
And, you know, when you go to step
19:07
and there's nothing there.
19:09
So I went straight down into the water,
19:12
hit my head off the dock,
19:15
scraped up my arms, and my husband
19:18
had to kick the boat into reverse
19:21
and pull it back because I was between.
19:25
I was like,
19:25
sandwiched between the Pont,
19:27
a pontoon boat and a dock.
19:30
When we're pulling in, I mean,
19:32
lucky enough,
19:32
we were just cruising in because
19:34
we were going to to,
19:38
dock it.
19:39
So we weren't going fast.
19:41
But that was a true incident
19:43
where I literally was just reaching
19:46
and didn't step far enough.
19:47
And I was like,
19:48
that's the first time
19:49
my depth perception
19:50
could have actually hurt me.
19:52
When I have this 20ft
19:53
pontoon boat coming at me,
19:55
I was like yelling to my husband.
19:57
My my shoes were floating in the water.
20:00
So the non-slip,
20:02
slip mats and showers and baths to me,
20:05
because sometimes you step
20:08
and you don't you're
20:09
you're not always stepping,
20:12
you know, far enough, not far enough.
20:14
And just being being safe there, that's
20:17
that's my additional safety.
20:20
Safety prep there.
20:23
So any questions on any of those things
20:26
so far?
20:28
No, I think so far, that all make sense.
20:31
I think just those
20:32
these are just in general,
20:33
these are all just things that
20:35
I hope that people
20:36
who are listening before
20:37
in actual and affiliation surgery,
20:39
even if you can't do every single thing.
20:41
Right.
20:41
Because, yeah, that happens to our brain.
20:43
I think some of us get really anxious.
20:45
We want to overprepare.
20:46
But even if all you can do
20:47
is just take 1 or 2 of these things
20:49
and then just pick
20:50
the things that you need
20:51
as they come up, right?
20:52
Like if you notice
20:53
you're running into stuff
20:54
all the time, the night time,
20:55
then maybe you try to close
20:56
to the glow strips.
20:57
Yeah.
20:58
But I really think this is,
21:00
this is just, well, so
21:01
well thought out and like,
21:02
just so many, you just you really,
21:05
you really dove in to, like,
21:06
what is every possible scenario here
21:09
that I would need to be prepared for.
21:11
And and it shows.
21:13
Well, and I will tell you
21:14
that I didn't need
21:15
all of these things either.
21:17
And just like you're saying that
21:20
you you may not need them
21:21
all, and I didn't,
21:23
but the fact that I did all of
21:25
these things,
21:29
made me feel so comfortable
21:32
going into my surgery
21:33
because I felt so prepared.
21:36
So, no, you know, that's just,
21:40
just a mindset
21:42
shift is like feeling prepared
21:45
makes you feel more confident
21:47
of what's going to happen
21:48
when you come out of surgery
21:49
and you are monocular now.
21:51
So if you take it as it is,
21:55
you can do a couple
21:56
and that can help you be prepared.
21:58
And then you can refer back to this list
22:00
and you could say, okay, I and I know
22:03
we'll probably attach this
22:05
to the, to the podcast notes, right.
22:07
For people
22:08
to be able to refer to,
22:10
hey, I am having struggles
22:12
with bumping into walls.
22:13
What are some of the things I could do
22:15
going back to that list to help me out?
22:17
Yeah, this is absolutely a resource
22:19
we can make available to people.
22:21
Right?
22:22
So in
22:22
so informally assessing
22:24
your house and areas
22:26
that may need additional lighting,
22:29
are they hallways bright enough.
22:31
Can I add motion lights to
22:34
or brighter bulbs.
22:35
Or maybe I have to light in my bulbs.
22:37
Maybe they're too bright.
22:39
I think for me, we
22:41
we have a really dark hallway.
22:44
we have kind of a long hallway,
22:46
and there's only one light in it.
22:49
So on the other end of the hallway,
22:52
adding motion lights into the plugs.
22:55
So when I walked by it,
22:56
you know,
22:57
the motion lights
22:58
would pick up and click on.
22:59
So I had light in the hallway
23:01
because the hallway was not lighted.
23:04
Maybe you have a lighted hallway
23:05
and it's not something you need, but,
23:07
you know, just asking yourself
23:09
these questions
23:10
to make that informal assessment
23:12
to see what you need
23:14
and what you don't need.
23:15
Do I have blinds in the windows?
23:17
in places that I might need it
23:20
to change the,
23:21
the natural lighting if necessary.
23:23
Maybe you have
23:25
sun that's shining in one of your windows
23:28
every day. Maybe it's really bright.
23:31
Maybe you don't have light coverings.
23:32
Maybe that's some place
23:33
you might need to add blinds.
23:35
But maybe your
23:37
your house is on the opposite ends
23:39
and there it's not getting in in
23:42
any sunlight.
23:43
Well,
23:44
now you've done that
23:44
informal assessment of your house.
23:46
So you know that's not
23:47
something you need to change.
23:50
under cabinet lighting for kitchen areas.
23:53
Is that something you need?
23:54
Do you walk in your kitchen
23:56
at night for a late night snack?
23:58
Do your kids, you know,
23:59
are you in there with your kids
24:01
or are you trying to be quiet?
24:03
Whatever. Maybe.
24:04
Maybe I don't late night snack at all,
24:05
but I need it at 5:00 in the morning
24:08
because I'm an early bird
24:09
and I'm trying not to wake up
24:10
anybody in the house,
24:12
so maybe I need some under
24:14
the cabinet kitchen.
24:15
Kitchen lighting?
24:18
maybe I have lampshades
24:20
or bulbs that I need to reduce the glare.
24:24
task lighting is huge, right?
24:28
in in your bedroom, on your couch.
24:31
If you're not using
24:32
some of that overhead lighting.
24:33
Do I have task lighting?
24:35
Is it enough for my computer
24:37
or do I need to?
24:38
I need to help work areas?
24:41
dimmable lights and light switches
24:44
if possible.
24:45
Could be something
24:46
that you use, lighting for any,
24:49
any kind of pathways at night outside.
24:54
I know we added a bunch of
24:55
solar lights to our our pathway outside.
24:59
because that was something that we have
25:02
in all Greystone.
25:04
so it blends in at the night for me.
25:08
And and the patterns that it was,
25:10
was difficult for me.
25:12
So adding
25:13
lighting to my pathways at night.
25:16
So there is also a link,
25:19
in here
25:21
for some vision research since
25:27
you're going to share this tab and said
25:29
so this is just a link
25:31
up, I'm getting a pop up.
25:33
Sorry about that.
25:35
lighting clocks,
25:37
eye chart, assistive
25:39
blue light pitch protection.
25:41
So this is.
25:42
Yeah, this is
25:44
just some of the things
25:45
that you can see here
25:48
that there's all kinds of different
25:50
vision, Aids here,
25:53
blind or low vision devices
25:55
for independent living.
25:56
So that that's just a resource
25:58
that was linked there.
26:01
That is incredible.
26:03
Like, that's such an exhaustive list.
26:05
Like how neat that
26:06
there are so many resources available.
26:08
Yeah.
26:09
And and I actually got on there and,
26:11
and the thing that I ordered off there
26:13
with actually sat on my coffee cup.
26:16
So I have my coffee cup in the morning
26:18
when I am using my coffee pot,
26:20
I stick my, my, gadget.
26:24
I actually don't know what it's called,
26:25
to be honest with you.
26:26
I got it off of this
26:28
because it's super helpful,
26:29
so I stick it on the edge of my cup.
26:31
So when I'm put in my coffee in there,
26:33
when it gets to the top,
26:35
or close to the top,
26:37
it starts to be so I know to stop pouring
26:41
so that I had purchased that.
26:44
And that's wonderful for me.
26:46
You know,
26:46
when you don't have
26:47
one of those contrasting cups,
26:49
if that's one of the
26:50
the things that your depth perception
26:53
has changed for you.
26:54
So there's a lot to
26:55
resources on on there
26:56
for low vision product.
26:59
All right. Assistive technology
27:02
I mean
27:03
on your iPhone or your Samsung device,
27:06
whatever you use
27:08
there's always a place
27:10
for assistive technology.
27:12
I think one of the things that,
27:15
you know,
27:16
I don't know
27:16
if anybody uses their phone
27:18
or their email for work
27:20
or anything like that.
27:21
I know phones are widely used now, right?
27:24
And we do a lot from our phones.
27:26
There's an accessibility feature
27:29
on your phone,
27:30
and when you go to the
27:32
accessibility feature, then you can look
27:35
for all of the audio and visual features.
27:41
And when you go to the audio
27:42
visual features
27:44
that can help you decide what
27:48
what assistive technology that you need.
27:51
Do you need your font to be bigger?
27:53
So your, your one eye is not straining?
27:57
do you need it to be bolder?
27:59
do you need it to be smaller?
28:01
I don't know, there
28:03
there could be many things
28:04
that you could use in
28:06
that's the one thing that I made sure
28:09
that I did is
28:11
I actually went through the features
28:13
one by one.
28:15
So by doing the the,
28:18
the vision settings one by one,
28:20
I was able to say, okay,
28:21
what change did this make?
28:24
And then once that change was made,
28:27
I looked to see what it did.
28:29
And then I would turn that feature off,
28:31
and then I would
28:32
in turn the next feature on to explore
28:35
what it did to the phone.
28:37
And then I turn it off and so on.
28:40
So I went through all of the features,
28:42
so I didn't change anything on my phone
28:45
at that time
28:46
because I didn't know what I would need.
28:49
So I just explored the features.
28:51
So I felt prepared.
28:53
And if I needed something,
28:56
then I would be able to
28:59
then go back and say,
29:00
okay, this is what I need.
29:02
I need it to be bolder.
29:04
so here's how I
29:06
here's here's
29:07
where I need to go to make it bolder.
29:09
Because sometimes
29:10
when you explore
29:11
multiple of those features,
29:12
you're not sure what you need and
29:14
and what's going to be good
29:16
for you at the time.
29:17
So I just took a few minutes
29:19
and it doesn't take long
29:20
to to explore all of those features.
29:24
I also
29:25
I put in here there are some apps,
29:30
for low vision
29:31
that you can look through.
29:34
this is another,
29:37
another thing that I linked in
29:39
to the presentation.
29:40
So any of these could be things that you
29:44
you might want to look into or explore
29:48
on your, on your apps.
29:55
There's there's so many things.
29:57
So I would say
29:58
at least just start with the phone
30:00
and the accessibility there.
30:02
And then you could explore
30:03
the apps apps later if needed.
30:07
Just
30:08
any any questions?
30:11
I have a couple.
30:11
So you see all of the different options
30:14
like just to see what's available.
30:15
I think the key thing
30:16
we maybe want
30:17
just people listening
30:18
to take away is like, okay,
30:19
this is a lot of information,
30:21
take what works for you
30:23
or just know that it's here
30:24
and you can come back to it,
30:25
because you may not feel like
30:27
you have the capacity to, like, explore
30:29
all of these options right now.
30:30
Maybe all you do is you try one
30:32
and that's it.
30:33
but just maybe utilize
30:35
this, bookmark
30:35
this, this episode
30:36
as a resource that you can come back to.
30:38
You can explore the presentation
30:40
Tara is presenting here.
30:41
And just,
30:42
you know, just know that you
30:43
can come back to this.
30:46
100%.
30:47
So this one requires no resources, right?
30:50
Except maybe a patch
30:51
or some kind of bandana.
30:53
And, you know,
30:54
this is something
30:55
that I will take out of Clay's playbook.
30:59
Kit, playbook.
31:00
Butler had talked about patch training
31:02
is that I'm pretty sure he did.
31:06
so
31:08
to me, patch training,
31:10
is like a fire drill, right?
31:12
It's.
31:13
And that's how I described it.
31:14
In here,
31:15
we practice it
31:16
because we help us know where to go
31:19
and what to do if we need a fire.
31:22
It's completely different.
31:23
When you have the fire.
31:25
There's emotions, there's crazy chaos.
31:29
There's phone calls
31:30
being made to emergency services
31:33
and all of the things
31:34
that are happening around us.
31:37
But and that's
31:38
what it's going to feel like maybe when
31:40
when you have your eye removed, there's,
31:43
you know, your
31:44
you have doctor's appointments,
31:46
you have check ups.
31:47
You, you know, you have that,
31:48
you wake
31:48
up, you have this
31:49
tennis ball thing on, on your face,
31:52
you know, it's a little bit of the fire.
31:55
You're being thrown into the fire.
31:56
So whenever we think about patch
32:00
training, it's not, you know,
32:03
it's not going to change
32:04
all of the, the emotions and things.
32:07
But what it is going to do is it's.
32:11
It's.
32:11
Going to help you
32:12
be more calm in the moment.
32:15
as you begin to navigate
32:19
the new world that you're in.
32:21
So patch
32:22
training for me,
32:23
like your brain's not set up.
32:25
You know, your brain set up for two eyes.
32:29
and so when you cover it with a patch,
32:31
you know, it's nothing like what it's
32:34
going to be like
32:35
when you're actually monocular.
32:37
But I will tell you, when I did it,
32:39
I went outside in the dark, I,
32:43
I realized I put it on,
32:45
I walked down my driveway,
32:47
I went
32:48
for a walk with it on, and I was like,
32:50
double checking myself.
32:51
was I step in too close
32:53
to the side of the road?
32:55
Was I step in too close
32:56
to the middle of the road
32:57
when I was taking a walk?
33:00
when I was walking down
33:00
my driveway at night,
33:03
I had to turn my head all the
33:05
way to be able to, like,
33:07
listen to the noises of the crickets
33:09
in the dark.
33:09
You know, when I hear a rustling and,
33:12
you know,
33:13
was there a rabbit or whatever
33:14
it is, and you look,
33:15
but you have to turn all the way.
33:18
So it's really it it's really just about
33:22
practicing for the fire,
33:24
just like we do a fire drill.
33:27
So that's that's genius.
33:28
That's literally
33:29
like the best way I've ever heard it.
33:31
But like.
33:33
Well.
33:33
I, I work in a school.
33:35
So that's how, you know,
33:36
I equate the fire drills
33:38
preparing kids, right,
33:39
where
33:40
you never actually getting
33:41
the emotions of the fire.
33:43
But it's the preparation
33:44
and the muscle memory
33:46
of when the fire comes. What do I do?
33:51
So patch training
33:52
is is another one of those
33:55
right strategies to to support
33:58
mental health.
33:59
staying connected.
34:02
You know,
34:02
this is one of the most important pieces
34:04
staying connected with people.
34:06
connecting with joy.
34:08
I know in our last episode,
34:09
I talked about staying connected
34:11
to Joy, doing the things that
34:14
are important to you
34:16
and that bring you joy.
34:17
Whether you're a golfer,
34:19
whether you like to walk in nature,
34:22
whether you just like going out to dinner
34:26
to certain places,
34:27
whatever it is that brings you joy,
34:29
make sure you continue
34:31
to do those things.
34:33
and staying connected
34:34
with a positive mindset and gratitude.
34:37
I mean, for me,
34:38
it was never really about.
34:40
And that's again, this
34:42
my personal journey and
34:43
and piece in my story that I'm sharing.
34:46
It was never really about the fact that,
34:49
losing, the sight of one of my eyes.
34:53
It was, I never really focused on that.
34:56
I was focusing on, like,
34:59
kicking cancer's, but, like,
35:01
this is coming out.
35:02
I am going to do the thing,
35:05
and I'm going to stay alive.
35:06
And that's what's important to me.
35:08
I'm not worried about losing that.
35:10
I. Because I'm still alive.
35:11
I'm still here,
35:13
and I'm still living for my kids.
35:15
I'm still going to work every day.
35:19
I'm still impacting the lives of others.
35:21
Like staying
35:21
connected to the things
35:23
that you are thankful for,
35:25
not the things that you know,
35:27
the thing that you're losing,
35:29
the safe thing,
35:30
you know,
35:31
just stay connected to those things
35:33
you have, not what you don't have.
35:35
So I know that's that's sometimes
35:37
hard to do.
35:38
It's easier said and said than done. But,
35:42
that's, that's
35:43
that's what I do every day
35:46
being active.
35:48
in the things that you
35:50
that you enjoy again,
35:52
meeting with homies for support, rest,
35:55
relax, cessation techniques,
35:57
sleeping, meditation,
35:59
all those things are to support, mental.
36:03
Health.
36:05
And I think one of we have
36:08
another slide here that I would say,
36:12
you know, hospital resources
36:14
are are really important.
36:16
Talking with your doctor
36:17
if you are struggling with anxiety
36:21
or depression, you know, this
36:25
this journey is different for everyone.
36:28
And a lot of times,
36:31
you know,
36:32
there are people that do struggle
36:33
with that anxiety and depression.
36:35
So if you are in a place,
36:37
make sure you're reaching out to your
36:40
to your care team
36:41
and making them aware of that.
36:47
do you have anything else to add there?
36:50
I, I just, I mean,
36:51
I just for a second that
36:52
I think that if you need the support
36:54
or even if you think you
36:55
might need it in the future,
36:57
it's always
36:58
it's always
36:59
something that is worth
37:00
pursuing for sure.
37:02
And when I think about this.
37:05
So the reason why I'm saying, saying
37:08
this is
37:08
if you need other support
37:10
to make sure you reach out for
37:12
it is
37:12
one of the things that my doctor
37:14
had shared with me was that sometimes
37:18
people go through a grieving process,
37:21
after a enucleation,
37:24
and they equate the grief
37:25
grieving process of losing the eye,
37:29
to the grieving process
37:31
of losing a loved one.
37:33
And you go through the stage
37:35
stages of grieving,
37:38
that part of your body.
37:40
I personally never had that
37:44
and never went through
37:45
that grieving process
37:47
and never experienced anything like that,
37:51
because I do believe it's partly
37:54
because I worked so hard
37:55
in the preparation area,
37:57
and I was very comfortable
37:59
with all of the things that I was dealing
38:02
with,
38:03
and I never had that
38:04
anxiety or depression
38:06
or any of those things,
38:08
that I needed support with.
38:11
But it's okay if you do.
38:13
It's normal if you do.
38:16
there's there's nothing to be ashamed of.
38:19
If you do need that support.
38:21
So keeping that in mind
38:24
is that if you do need that support,
38:26
please, please, please
38:27
reach out
38:28
and stay connected to the community.
38:30
Stay connected to your health team.
38:32
because the mental health
38:33
piece is so important.
38:35
And if you are
38:36
if if you do go through
38:38
that grieving process,
38:39
there are people there
38:40
to support you in that.
38:43
Absolutely.
38:45
the last thing to talk about
38:47
is the prosthetic,
38:49
ensuring that you study the process
38:52
so you know what to expect.
38:56
researcher Oculus
38:58
so you feel comfortable with them.
39:01
I think that is one of the things
39:03
that was really important to me.
39:06
We did
39:06
we did talk about this
39:08
a little bit in our first episode.
39:10
Is making
39:11
the decision
39:12
of whether you want to have a fun eye
39:15
or you want to have your,
39:18
you know,
39:18
along with your with your look like I,
39:22
I did a photo shoot of the
39:26
of both
39:27
my eyes together from multiple angles.
39:30
I did a photo shoot with just the that
39:33
I so I could have it to remember.
39:36
those are things that I did for me to,
39:39
to have a memory of,
39:43
So those are just little tips.
39:45
But the prosthetic is definitely part
39:47
of the healing process, right?
39:49
Because now we're weeks after surgery
39:52
and we're probably ready
39:54
to see what we're going
39:56
to look like moving forward.
39:57
Well, you know, feeling
39:59
like we're whole again
40:00
because we have a prosthetic.
40:03
so whatever your personal preference
40:05
is, if it is an empowerment eye,
40:07
studying the person
40:09
where you want to get
40:10
that empowerment I or I from,
40:14
maybe it is the lab that's local to you.
40:17
Maybe it's not.
40:19
So this part is like the last piece
40:22
to the puzzle.
40:23
After you have your eye.
40:25
It's it's almost like closure, right?
40:27
It's like that closing piece.
40:29
I've.
40:30
I've made it through the process,
40:33
I survived it.
40:34
I'm moving on
40:36
because I got my prosthetic.
40:38
So that's really important to be able to
40:41
to be able to make this your own
40:44
and do whatever suits your needs.
40:49
I have a question.
40:50
Yeah, yeah.
40:51
So on this, this piece of right,
40:53
you know,
40:54
adjusting to having your own prosthesis,
40:56
having it made
40:56
in the way that it makes sense to
40:58
you be it
40:58
a look alike
40:59
or an empowering eye
41:01
that is kind of more fun and cool.
41:02
I am curious,
41:04
do you think that, the people
41:06
that you've met and mentored,
41:08
that having some level
41:09
of personalization,
41:10
whether it's like a tiny tattoo
41:11
on, like the look, a lot of eyes,
41:13
but I've seen a lot of
41:14
or having something
41:15
that is a glitter eye or,
41:17
you know, just done
41:18
intentionally different.
41:19
Do you think that the mental health
41:21
of the patients that you've seen
41:22
go through enucleation
41:23
and choose to do
41:25
that is better or the same, or,
41:28
you know, just not as good?
41:29
have you noticed the difference
41:31
in the patients you've mentored?
41:33
I would say their confidence level
41:35
and feeling comfortable
41:37
with their prosthetic, is impacted
41:41
at least by ten, right?
41:43
If if they're feeling confident
41:45
with the way that their,
41:47
their prosthetic looks that is impacting
41:50
their mental health tenfold.
41:54
yeah, absolutely.
41:55
I mean, there's
41:56
nothing like
41:58
looking at yourself in the mirror
42:00
and not feeling comfortable,
42:04
with the way that you look at yourself
42:08
or you look at your eye,
42:09
or if you feel like you're
42:10
looking in the mirror
42:12
and you're
42:12
reminded every day of this negative piece
42:17
where you're not comfortable,
42:20
that that can be long term trauma,
42:23
you know?
42:23
So when I look in the mirror at myself
42:27
and I look at my empowerment,
42:28
I, I'm excited
42:31
because I am for staying true to myself
42:35
and being who I am by, you know,
42:38
shaping myself
42:39
with the type of
42:40
I that I'm wearing every day.
42:43
and I think that goes for I don't think
42:46
I shouldn't say the words think,
42:48
because that's a guess.
42:49
I know that
42:50
I have been told
42:51
that it is very empowering.
42:55
to to have that confidence in
42:57
yourself when you get your prosthetic
42:59
and you feel comfortable with it.
43:01
I, I did me
43:02
so actually,
43:03
I came across the person,
43:05
that she actually does my hair
43:08
now, so she,
43:10
she has a prosthetic eye,
43:11
she's monocular.
43:12
She's from she's from the community.
43:15
And I found her.
43:17
She's about a 45 minute drive.
43:19
So I drive there to to get my hair done
43:21
because I'm supporting
43:22
my monocular friends.
43:24
but I go to her,
43:27
and she told me about an experience.
43:30
She actually went to the to a lab
43:33
that I had been referred to,
43:34
that I chose not to go to,
43:36
and she had a very uncomfortable
43:40
experience at the lab,
43:43
and she was not comfortable
43:45
with her prosthetic eye.
43:46
And she, in the long
43:49
term,
43:50
ended up going somewhere else
43:51
to get an eye,
43:53
a prosthetic new prosthetic eye.
43:55
And in that time,
43:56
where she went to somebody else,
43:58
it made a world of difference for her.
44:01
because now she felt much
44:03
more comfortable with herself and her eye
44:07
when she looked in the mirror.
44:09
So that is just one specific example
44:11
that I have.
44:12
If I knew how much it impacted her
44:15
not to have a prosthetic,
44:17
that she was comfortable.
44:19
Oh, that's so impactful.
44:21
and and it makes a difference,
44:23
right, to have the opposite experience
44:25
and be able to share that.
44:26
Like for you
44:26
to have had a good experience
44:28
with your ocular rest
44:29
and to then be able to refer people
44:31
you mentor
44:31
locally to that
44:32
ocular is based on
44:33
that experience feels so good.
44:36
I'm like,
44:37
I mean, just knowing
44:38
from referring people myself,
44:39
I would bet that
44:39
it feels so good for you too.
44:41
Yeah, yeah it does.
44:43
So absolutely.
44:44
All of this, in summary, to say is
44:47
you can do all of these things.
44:49
You can do one. You can do none.
44:51
This is your journey
44:53
and you need to make it
44:54
what you want it to be.
44:55
These are all just tips,
44:57
you know, from my self
44:58
that has gone through the process.
45:01
I know many, many other people
45:04
have been through this process
45:06
and probably
45:06
have even additional things to share.
45:09
So make sure that you're,
45:10
hopping on these podcasts
45:12
because like I said,
45:13
I listen to over 40 of them, so it's
45:16
definitely
45:18
something a way to educate yourself.
45:20
So I think making
45:23
making whatever
45:24
you need to make out
45:25
of your journey, please,
45:26
please do that
45:27
and just know
45:28
that, you know, there's
45:29
lots of available
45:30
resources out there for you
45:33
all.
45:34
Tara, this has been fantastic.
45:36
Do you have a minute
45:36
that we could just give you
45:37
a couple questions? Sure, sure.
45:40
Okay, so my first question is,
45:42
as far as ocular melanoma
45:44
specifically goes,
45:45
were there any support
45:47
groups that you utilized?
45:48
You mentioned support groups
45:49
and like kind of
45:50
reaching out to your community,
45:51
did you specifically reach out
45:52
to just local people or,
45:54
and, you know, as
45:55
you found them,
45:55
or did you also find
45:57
some online community?
45:59
So I went to Tuesday
46:02
night for with insurance site.
46:05
and then I got into some Facebook groups
46:10
and in those Facebook groups,
46:12
there's a one eyed Facebook group,
46:14
that I had joined in ocular melanoma.
46:18
So there are a couple
46:19
Facebook communities
46:20
out there for online.
46:23
those are,
46:24
you know, ones that I had shared
46:25
play was in one of them.
46:27
There's multiple out there
46:29
to choose from.
46:30
I don't know the names of all of them
46:32
because there are multiple,
46:33
but I joined a couple of those
46:36
to to stay connected to the community.
46:39
So I think
46:41
and then again
46:42
Ohio State, now I'm mentoring with them.
46:45
So that's a whole nother
46:46
community through my, my local area.
46:49
So making
46:50
sure you reach out to the hospitals
46:52
and seeing if they have anything
46:54
that they already have in place,
46:56
you have adherence, right?
46:58
And then you have lots of kind
46:59
of social communities on social media.
47:04
So good.
47:04
Okay.
47:05
This this is something
47:06
that I didn't even
47:07
really fully think about.
47:08
And I don't know
47:09
if this is even something
47:10
you've thought about.
47:11
but insurance and prosthetic eyes.
47:15
Have you ever talked to the people
47:18
you mentor about, like,
47:19
anything that you needed to do
47:20
ahead of time to prep
47:22
for trying
47:23
to get insurance to cover your eye?
47:24
Or have you just found that,
47:26
you know,
47:26
it was your experience
47:27
that you just had to pay cash for it?
47:29
So I actually didn't have to pay cash
47:31
for it. So,
47:34
insurance for me, I actually did
47:36
some of my own research.
47:38
And that's a great question
47:39
because I've never actually had anybody,
47:41
ask me that question.
47:43
I was told by my ocular oncologist
47:47
that I would probably have to pay part
47:49
out of my pocket,
47:50
and then get reimbursed for
47:52
for some of it.
47:54
but I reached out as soon as I had
47:56
my enucleation scheduled,
47:58
and I and I chose my Oculus.
48:00
I reached out to my Oculus right away,
48:03
and I got on to the calendar
48:06
for scheduling,
48:07
and I worked with their team
48:10
and they already sent pre authorization
48:13
from the Oculus to my insurance company.
48:17
So it was rolling.
48:19
before before I got before
48:22
I even got there
48:24
to get fitted for the eye.
48:26
So I actually had nothing
48:28
coming out of my pocket.
48:29
So my tip would be is
48:31
as soon as you know,
48:32
you're having that, that
48:34
a enucleation piece
48:35
and you've chosen
48:36
your oculus
48:37
is to reach out to whoever it is.
48:40
Now my phone I so your insurance
48:43
usually pays for that initial eye
48:45
and in any eye after that.
48:47
So my phone I pay out
48:50
I paid out of pocket for but you know,
48:53
I had that initial cost
48:54
for my first eye that was covered.
48:56
And then I paid $500 for another phone.
48:59
I but,
49:01
you know,
49:02
according to some of the other things
49:03
that other people pay out of pocket,
49:06
I didn't feel like it was that bad,
49:08
but it was something
49:08
that my family and I had planned for.
49:12
going in.
49:12
We actually planned
49:13
because at my ocular oncologist
49:15
told me
49:16
that I would probably
49:17
have to pay out of pocket
49:18
and being reimbursed,
49:20
so when I didn't,
49:21
I was like, oh, this is like a party.
49:23
Like, I'm excited.
49:25
But I would definitely
49:26
that tip would be
49:27
as soon as you find out,
49:29
get, you know, get paperwork going,
49:31
get on the schedule, get get scheduled,
49:34
talk to there.
49:35
there
49:36
medical claim people
49:37
and their insurance people
49:38
to get that ball roll
49:39
in as soon as you can
49:40
so that maybe
49:41
we will hopefully reduce the amount
49:44
you have coming out of your pocket.
49:46
Now, that's such a good point.
49:48
Okay,
49:48
I think this is probably
49:49
my last question.
49:50
And then we'll wrap it up
49:51
and let people
49:51
just get back to their days.
49:53
but I am wondering
49:55
when you had your eye on nucleated.
49:57
Usually what happens after that is
49:58
you have a conformer, right?
49:59
So that's that like bubble eye that they,
50:01
they put that temporary piece
50:03
in that holds the socket open.
50:05
Did you have the same size
50:07
Conformer the whole time?
50:08
or did you see your oculist
50:11
and find that it was better fitted
50:12
after you saw your oculist
50:14
before you even had that I made.
50:16
So I had my conformer made,
50:19
and then my ocular oncologist
50:23
actually offered me to say,
50:25
do you want a painted conformer?
50:28
so she came in and she was like,
50:33
here are the colors
50:34
that we have to choose from
50:36
for your painted conformer.
50:38
So she said, you know, insurance
50:40
doesn't pay for the painted conformer
50:42
you would have to pay.
50:43
I think it was $120
50:45
or something like that.
50:46
But we could order
50:47
you a painted conformer
50:49
so you didn't have to have
50:50
to clear one in
50:51
until you get your prosthetic.
50:53
So I did the thing
50:54
I ordered the painted conformer,
50:57
and when I ordered the painted conformer
51:00
and I put it in,
51:01
it was a different size
51:03
from so from the clear conformer.
51:06
And it was very uncomfortable for me
51:10
the size that it was.
51:11
And so the painted conformer
51:15
that was ordered for me,
51:16
I didn't end up wearing
51:18
because of the discomfort,
51:19
and I ended up
51:20
keeping the clear conformer in
51:22
and putting it back in,
51:23
because that's
51:24
what was comfortable for me.
51:26
and then I kept that clear.
51:27
Conformer for the rest of the time,
51:30
I will say,
51:30
I do want to add this
51:31
one, this one other tip.
51:34
because this wasn't in there.
51:35
One of the things
51:36
that I had learned after,
51:38
and I'm sure you probably know
51:39
this is immediately
51:41
after when you have your eye removed.
51:46
when you move your eyes
51:49
and you kind of look,
51:50
that's when you feel the pain.
51:52
That was really the only pain
51:53
that I had is
51:54
when I was looking
51:55
to the side or whatnot.
51:57
So things that I did,
51:58
I tried to move things at eye level,
52:01
so I wasn't like up and down,
52:03
but one of the things that I did is,
52:06
if I had to look at something to my left
52:09
or my right, I would close my eyes,
52:13
turn my head,
52:14
and then open my eyes to look so that me
52:18
trying to move my eye
52:20
to the left or right,
52:22
didn't cause a lot of pain.
52:24
So in the first couple
52:25
days, that strategy of closing your eye,
52:28
turning your head
52:29
opening and looking,
52:30
and I know that seems
52:31
kind of difficult tonight.
52:32
I have I have to do that all the time.
52:35
So that would be my biggest tip of
52:37
like when you come out of surgery.
52:39
I didn't, I wasn't prepared.
52:41
nobody told me
52:42
that I was going to have that
52:44
that initial pain, like moving
52:46
and looking around
52:47
that room was going to be painful for me.
52:50
so that was one of the things I,
52:54
would maybe.
52:54
Practice.
52:56
Because it's not natural
52:58
to close your eyes
52:59
and turn your head
53:00
and open your eyes to look.
53:01
The natural thing
53:02
is, I'm just going to look to the side
53:05
or I'm going to look.
53:06
I'm going to look to the left.
53:07
I'm going to look to the right.
53:07
I'm going to look down.
53:09
You know,
53:09
that's the natural thing
53:11
that we don't turn our
53:12
our head for everything.
53:13
We just turn our eye.
53:15
and that's when you get the most pain.
53:17
So practicing that like it could be
53:20
when you do your patch training or,
53:24
you know,
53:24
something like that,
53:25
that you're practicing
53:26
for the fire again. Right.
53:28
We're we're back to the fire drill.
53:29
So I'm going to practice
53:31
doing some of those things
53:33
because it's it's
53:34
not a natural thing that you do.
53:36
So it will definitely help with the pain
53:39
when you come out of surgery.
53:40
So that's another tip
53:41
that I probably need to add
53:43
into this slide show for people is like,
53:45
when you come out of surgery,
53:46
here are some tips for
53:48
right when you come out of surgery.
53:51
Well,
53:51
all things
53:52
considered, I felt like this
53:53
as far as just things
53:54
you can do to prepare.
53:55
I'm like you said,
53:56
kind of the point
53:57
of this
53:57
whole presentation
53:58
that when you made this mentoring program
54:00
or kind of started,
54:01
this was to help people duplicate
54:04
some of the process of what you did
54:05
and to just mentally
54:07
prepare a little bit more,
54:08
maybe not,
54:09
so that you could actually do
54:10
all of these things
54:11
or even need all of them.
54:13
But it was more of that mindset
54:14
of feeling
54:16
like you said, like the fire drill.
54:17
Like it just helps
54:18
you feel like,
54:19
okay, this is a little bit
54:20
more muscle memory.
54:21
And now I can think logically through
54:23
what I'm experiencing.
54:24
I felt like that was such
54:25
a good way to explain it.
54:26
So the fire drill analogy,
54:28
like absolute chef's kiss,
54:30
and just for like reference
54:32
for anybody listening to this podcast,
54:34
we do have a couple of enucleation panels
54:36
that I'm sure Tara has listened to.
54:38
And those are enucleation panels,
54:40
multiple patients
54:41
talking about things
54:42
like things to prepare for pain
54:43
and just kind of
54:44
what was the surgical pain
54:45
like and how long did it last?
54:47
So if you're interested in listening
54:49
to those podcast episodes,
54:50
we will link them in the show notes.
54:52
and they have people like Clay.
54:54
And then there's,
54:55
you know,
54:55
a host of other patients
54:56
like Tara who have awesome things
54:58
to share with the community.
55:01
Thank you
55:01
so much for having me back again today.
55:04
You're so welcome, Tara.
55:05
This was fantastic, I loved it.
55:07
I love the hat.
55:08
And like, seriously,
55:09
this was so much fun.
55:10
It's such a style.
55:11
Like it's such a style.
55:13
as we wrap it up, you guys,
55:15
I just want to thank you
55:16
again, our listeners,
55:17
for being here, for tuning in to the
55:18
I believe podcast.
55:19
If you wanted to catch those zoom nights,
55:21
we do have those Tuesday nights at 7 p.m.
55:24
eastern time.
55:25
You can find the link on social media,
55:27
on our Facebook page
55:28
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55:29
or Instagram Addiction site.
55:31
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55:32
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55:33
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55:34
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55:35
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55:37
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55:39
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55:40
We'll see you guys next time.
55:41
Thanks for tuning in. Just.