Latest / DA CREW Podcast / Believe In The Journey Podcast| TRIVEDA HARRIS

Transcript

Believe In The Journey Podcast| TRIVEDA HARRIS · DA CREW Podcast

• 0:00
  Speaker 1: Welcome, welcome, welcome. You're tuned in.
• 0:07
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• 0:15
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• 0:21
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• 0:22
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• 0:24
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• 0:31
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• 1:03
  Speaker 4: begins with us.
• 1:05
  Speaker 1: Faith, purpose, power, trust.
• 1:08
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• 1:15
  Speaker 1: This is where it starts.
• 1:17
  Speaker 2: We are the change. Right here in our hearts.
• 1:24
  Speaker 4: Welcome home, welcome through.
• 1:27
  Speaker 2: There's a place for you.
• 1:30
  Speaker 1: A crew around the world.
• 1:32
  Speaker 4: Lifting every voice too.
• 1:34
  Speaker 2: Tune in nightly Sunday through Thursday, 8 p.m.
• 1:38
  Speaker 4: Eastern time. Miss the live, catch the replay, 15, 20,
• 1:42
  Speaker 4: more behind. We are the champs. Welcome to the cool
• 1:58
  Speaker 4: This is where it starts.
• 2:17
  Speaker 3: She's got a story written deep within her soul pages
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  Speaker 3: full of battles only heaven knows through the pain through
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  Speaker 3: the pressure through the tears she had to cry she
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  Speaker 3: found strength in the valley and lifted her eyes south
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  Speaker 3: carolina roots but her voice travels wide calling dreamers forward
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  Speaker 3: telling fear to step aside with every word she speaks
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  Speaker 3: somebody learns to stand because she knows what it means
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  Speaker 3: to be held in god's hand r &.
• 2:45
  Speaker 1: B Good evening and welcome to Believe in the Journey
• 2:55
  Speaker 1: podcast where I am your host Trevita Harris and tonight
• 3:00
  Speaker 1: I am just going to be talking to you guys
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  Speaker 1: simply about Chiari malformation and how it is Chiari malformation
• 3:12
  Speaker 1: awareness month and I just want to talk and bring
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  Speaker 1: some awareness to that condition and And I want to
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  Speaker 1: talk about the importance of having a support system with
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  Speaker 1: dealing with any kind of illness, but specifically Chiari malformation.
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  Speaker 1: But before I do that, before we do anything, we
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  Speaker 1: have to go to God in prayer. Dear Heavenly Father,
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  Speaker 1: thank you for bringing me here tonight in front of
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  Speaker 1: your children. Help the words of my mouth fall upon
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  Speaker 1: the ears that need to hear and help those who
• 3:44
  Speaker 1: are dealing with Chronic illnesses know that they have people
• 3:48
  Speaker 1: who are willing to help them anytime they're having a
• 3:53
  Speaker 1: hard day or whatever. Even though some of us don't
• 3:57
  Speaker 1: look like we're going through things, we are. But it
• 4:01
  Speaker 1: is because of you and your grace that you have
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  Speaker 1: extended upon us that we are able to do what
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  Speaker 1: we do. In your precious and holy name, Jesus, I pray. Amen.
• 4:11
  Speaker 1: But I just wanted to talk to you guys briefly
• 4:14
  Speaker 1: about Chiari malformation and the importance of having a support system. Like,
• 4:23
  Speaker 1: we don't always know how our body is going to
• 4:28
  Speaker 1: react from day to day. Well, really from moment to moment.
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  Speaker 1: Most of you probably have heard about Chiari. may not
• 4:38
  Speaker 1: have heard about Chiari, but I'm gonna start with basically
• 4:41
  Speaker 1: just telling you what Chiari malformation is. And that is,
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  Speaker 1: it's a serious neurological condition that affects the entire body
• 4:50
  Speaker 1: because your brain, the cerebellum is pretty much the central
• 4:55
  Speaker 1: part of what your body needs to function. And it's basically,
• 5:02
  Speaker 1: it means in layman's terms, without getting too technical, it's
• 5:08
  Speaker 1: basically where there's an opening at the base of the
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  Speaker 1: brain and part of it protrudes down through the spinal cord,
• 5:16
  Speaker 1: that opening at the base of the skull. And part
• 5:20
  Speaker 1: of the cerebellum, the far magnum, protrudes through that and
• 5:24
  Speaker 1: it sits on the top of the spinal cord, which
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  Speaker 1: causes a lot of symptoms. Some people, it varies from
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  Speaker 1: person to person, So headaches is not the only thing.
• 5:39
  Speaker 1: And a Chiari headache is different from a migraine. You
• 5:44
  Speaker 1: have people who suffer from migraines who do not have
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  Speaker 1: Chiari malformation. And some people who suffer with migraines have
• 5:52
  Speaker 1: Chiari malformation. I am one of those people. There are
• 5:56
  Speaker 1: four types of Chiari malformation. But I'm not going to
• 6:00
  Speaker 1: get into all of that. The next show that I
• 6:03
  Speaker 1: do on Thursday is The 24th, I think it is,
• 6:07
  Speaker 1: the 24th or the 27th, I'm not quite sure. But
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  Speaker 1: I'm going to go into a little bit more detail
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  Speaker 1: about that. But having a support system is very, very
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  Speaker 1: important because it teaches you that you can actually lean
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  Speaker 1: on people and not try to do everything yourself. Chiari
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  Speaker 1: is one of those conditions where you can be fine
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  Speaker 1: one minute, the next minute, everything seems like it's falling apart.
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  Speaker 1: And it teaches you how to be strong in ways
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  Speaker 1: and areas that you never thought you would be strong.
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  Speaker 1: And I can honestly say, I never thought that it
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  Speaker 1: would be teaching me to actually ask for help because
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  Speaker 1: I struggle with asking for help. And This has been
• 7:06
  Speaker 1: one of those things where I've had to learn when
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  Speaker 1: I'm having a hard day that I need some assistance
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  Speaker 1: and I need someone to help me do whatever it
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  Speaker 1: is I might be trying to do. And sometimes I
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  Speaker 1: still will try to do it myself. If you have
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  Speaker 1: a friend that is known to be that strong friend
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  Speaker 1: in your group and she, is dealing with a chronic
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  Speaker 1: illness as well. It's okay to ask her if she
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  Speaker 1: needs some help. She probably is going to tell you no.
• 7:47
  Speaker 1: I am probably that person who's going to tell you
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  Speaker 1: no because I'm so used to handling things on my
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  Speaker 1: own and I don't want to make people feel uncomfortable.
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  Speaker 1: When it comes to asking for assistance. So I will
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  Speaker 1: struggle before I ask. The difference with living with Chiari
• 8:15
  Speaker 1: means that there are some days we can handle whatever comes.
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  Speaker 1: And then there are other days where you can't really
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  Speaker 1: handle too much of anything. You can barely get out
• 8:24
  Speaker 1: of the bed because any slight movement of your head
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  Speaker 1: hurts really, really bad. And it's not something that you
• 8:33
  Speaker 1: really want to have to end up doing. So Chiari
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  Speaker 1: is also a good indicator for me for the weather
• 8:45
  Speaker 1: because I can tell when rain is coming because my
• 8:51
  Speaker 1: head hurts so bad and it will hurt so bad
• 8:54
  Speaker 1: that the hair on my head hurts. Any slight movement
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  Speaker 1: that I make hurts. And I try to be very,
• 9:03
  Speaker 1: very still, but that doesn't always work.
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  Speaker 5: So help people who are dealing with a chronic illness.
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  Speaker 1: Let them know that they're not alone. Let them know
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  Speaker 1: that they can depend on you and it's not a
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  Speaker 1: burden for them to ask because a lot of people
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  Speaker 1: who deal with chronic illnesses feel like they're a burden
• 9:33
  Speaker 1: on those who are not in a state of pain
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  Speaker 1: all the time. Because when you live in chronic pain
• 9:45
  Speaker 1: all the time, a day when you don't have pain is,
• 9:50
  Speaker 1: is a blessing to say the least. Chiari is one
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  Speaker 1: of those things where it's a rare condition. People don't
• 10:03
  Speaker 1: really know much about it. Haven't really heard a lot
• 10:07
  Speaker 1: about it. It's not one of those things where I'll
• 10:11
  Speaker 1: just have the surgery. It'll fix everything. Nine times out
• 10:15
  Speaker 1: of 10, that's not always the case. Some people have
• 10:18
  Speaker 1: been really successful with having a decompression brain surgery. Others
• 10:23
  Speaker 1: have not. I have not had the surgery, have not
• 10:26
  Speaker 1: considered having the surgery. Me and God have been riding
• 10:29
  Speaker 1: this thing out for the last 14, 15 years. And
• 10:34
  Speaker 1: I will continue to do that until he tells me
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  Speaker 1: it's time to actually have the surgery. Sometimes support looks
• 10:43
  Speaker 1: like just being a listening ear to a person who
• 10:47
  Speaker 1: is dealing with a chronic illness. And a person with
• 10:52
  Speaker 1: Chiari is... I'm just going to talk about me. I
• 11:02
  Speaker 1: struggle with trying to get used to somebody helping me because...
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  Speaker 1: I'm so used to doing it all by myself. And
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  Speaker 1: the one thing that I hate, people say, well, just rest. Okay, well,
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  Speaker 1: rest doesn't fix this. Sleeping doesn't fix this. Taking a
• 11:30
  Speaker 1: nap doesn't fix this. I'm sorry, y'all. I'm laughing at
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  Speaker 1: this man walking around here in this... San Francisco House Code.
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  Speaker 1: Lord Jesus. Also sometimes if you had a whole day plan,
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  Speaker 1: the plans may change randomly all because Kiari decided that, oh,
• 12:03
  Speaker 1: today is not the day. It's just not the day.
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  Speaker 1: You may have wanted to do something But you can't. No,
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  Speaker 1: nobody knows what you are going through just by looking
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  Speaker 1: at a person and especially me. I don't look like
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  Speaker 1: what I'm going through. And I'm grateful that I don't
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  Speaker 1: look like what I'm going through. But I'm also wanting
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  Speaker 1: to advocate for those who do look like they're going
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  Speaker 1: through something. They still need assistance. They still need help.
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  Speaker 1: And it's not easy for them to ask for that.
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  Speaker 1: So if you know somebody that is dealing with a
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  Speaker 1: chronic illness, always reach out and ask them, hey, listen,
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  Speaker 1: is there anything that I can take off your plate
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  Speaker 1: today to help you? And they might say no, but
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  Speaker 1: if you see them struggling with something, just take it
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  Speaker 1: out of their hands. Just do that. Because I'm going
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  Speaker 1: to be that person. I'm going to say I got it,
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  Speaker 1: even if I because I struggle with asking for help
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  Speaker 1: and I'm getting better. I'm learning how to do that.
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  Speaker 1: And I'm learning really. Kiara has taught me how to
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  Speaker 1: listen to my body a little bit more. And I
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  Speaker 1: can honestly say over the last two years, I have
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  Speaker 1: not had an overnight hospital stay. because I've been more
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  Speaker 1: intentional on listening to my body, which is great because
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  Speaker 1: at least once a year, if not twice, maybe even
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  Speaker 1: three times out of the year, I would have an
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  Speaker 1: overnight stay in the hospital. And I haven't had one
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  Speaker 1: since 2023. I have not had an overnight hospital stay
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  Speaker 1: since then, and I'm grateful. And so I want to
• 14:08
  Speaker 1: continue to do that and stay at the hospital as
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  Speaker 1: best as I can, because I don't like to go
• 14:16
  Speaker 1: and I've learned different tricks. And then also when you
• 14:21
  Speaker 1: work in the medical field, it's one of those things
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  Speaker 1: where you learn what they're going to do for you
• 14:29
  Speaker 1: at the hospital. So if you can learn how to
• 14:33
  Speaker 1: treat yourself at home Because looking like me, a black
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  Speaker 1: woman going into the ER, nine times out of 10,
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  Speaker 1: they're going to prejudge me and think that I'm just
• 14:45
  Speaker 1: there to seek medication. And I'm not seeking just medication.
• 14:50
  Speaker 1: I'm seeking relief because the pain has gotten so bad
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  Speaker 1: and I don't know what else to do. And so
• 15:01
  Speaker 1: having to go to the ER, is definitely the last resort,
• 15:07
  Speaker 1: especially for a person who deals with chronic pain. And
• 15:11
  Speaker 1: if you're a Black woman, most of the time when
• 15:13
  Speaker 1: you go to the hospital, you're looked at as if
• 15:17
  Speaker 1: you're seeking just narcotics. And a lot of times we're
• 15:22
  Speaker 1: not seeking narcotics. We're simply seeking help and knowing what
• 15:28
  Speaker 1: to say to get the actual treatment that you need
• 15:33
  Speaker 1: without them treating you as if you are number one,
• 15:37
  Speaker 1: bothering them. Two, you're seeking just the drugs when you're
• 15:42
  Speaker 1: seeking help and relief. And it's frustrating because I've had
• 15:48
  Speaker 1: to deal with that. And it's horrible, but I've learned
• 15:56
  Speaker 1: to advocate with intention and be direct about what it
• 16:01
  Speaker 1: is that I need. And once I've learned how to
• 16:06
  Speaker 1: do that, it took some while for me to be
• 16:12
  Speaker 1: forceful without being rude, I'll say, because sometimes it can
• 16:21
  Speaker 1: be a little disrespectful, but when you're in pain and
• 16:26
  Speaker 1: you want help, you're going to say whatever you need
• 16:29
  Speaker 1: to say to get them to understand what it is
• 16:32
  Speaker 1: that you need them to do. And having a good
• 16:36
  Speaker 1: primary care provider, neurologist, and all of those things, letting
• 16:41
  Speaker 1: them know what is working and what is not, asking
• 16:45
  Speaker 1: the right questions, and not just taking every single medication
• 16:49
  Speaker 1: that they try to give you because some medications create
• 16:54
  Speaker 1: more symptoms than And you already deal with enough. So
• 17:00
  Speaker 1: knowing what works for your body is very important. Knowing
• 17:06
  Speaker 1: what limits to set for certain medications, because every dosage
• 17:16
  Speaker 1: may not be the right dosage. The standard dosage, I'll say,
• 17:20
  Speaker 1: may not be the right dosage for you. So you
• 17:22
  Speaker 1: may have to tweak that and having that. conversation with
• 17:26
  Speaker 1: your doctor is going to be important. So making sure
• 17:31
  Speaker 1: that you have a good medical provider who actually listens
• 17:36
  Speaker 1: to what you're saying, because you live with your body,
• 17:40
  Speaker 1: you live in it 24 hours a day, seven days
• 17:43
  Speaker 1: a week, 365 days a year. You know what feels different.
• 17:48
  Speaker 1: You know what feels right, what feels wrong, what's working,
• 17:52
  Speaker 1: what's not. All of that is important when it comes
• 17:55
  Speaker 1: to advocating for yourself and having a good support system
• 18:00
  Speaker 1: around you, not just family and friends. I have a
• 18:05
  Speaker 1: very good support system around me and it has gotten
• 18:11
  Speaker 1: so bad. I ain't going to say so bad, but
• 18:14
  Speaker 1: it's gotten to the point to where they can tell
• 18:17
  Speaker 1: that I'm not feeling good just through text message. And
• 18:23
  Speaker 1: I'm grateful for those friends and my family who know.
• 18:29
  Speaker 1: My kids definitely know. And they're quick to call to say,
• 18:36
  Speaker 1: what are you doing? Because I had you on my
• 18:39
  Speaker 1: mind and I feel like you're doing something you're not
• 18:42
  Speaker 1: supposed to do. Nine times out of 10 here lately,
• 18:45
  Speaker 1: I have not been doing nothing I'm not supposed to
• 18:47
  Speaker 1: be doing. So I have really been resting and doing
• 18:52
  Speaker 1: the things that I am supposed to be doing, which
• 18:56
  Speaker 1: is mostly resting. I'm not doing anything outside of that. Now,
• 19:01
  Speaker 1: when I do decide that I want to get up
• 19:04
  Speaker 1: and mop the floors and do the laundry and do
• 19:09
  Speaker 1: all this other kind of stuff, it's like today. I did,
• 19:16
  Speaker 1: I got up and I... I mopped the floors upstairs
• 19:20
  Speaker 1: and I mopped the floors downstairs in the kitchen and
• 19:24
  Speaker 1: in the living room. I didn't do the lower level,
• 19:27
  Speaker 1: but I did do the upstairs and the first level.
• 19:32
  Speaker 1: Didn't do nothing else, but I'll probably pay for that tomorrow.
• 19:37
  Speaker 1: But it was something that needed to be done and
• 19:39
  Speaker 1: I had the energy to do it. Now, tomorrow, of course,
• 19:44
  Speaker 1: I probably will pay for that. But having people who
• 19:50
  Speaker 1: are there to offer support, pray for you, and give
• 19:55
  Speaker 1: you words of encouragement, number one, having that relationship with God.
• 20:01
  Speaker 1: My relationship with God has been beneficial to me in
• 20:05
  Speaker 1: more ways than I can even count. And more ways
• 20:08
  Speaker 1: than I can even share because having a stroke in
• 20:13
  Speaker 1: 2009 and then finding out that all the years of
• 20:17
  Speaker 1: all the other symptoms that I was dealing with as
• 20:19
  Speaker 1: a child growing up with the random nosebleeds, not being
• 20:22
  Speaker 1: able to regulate my body temperature, the heart palpitations, the
• 20:27
  Speaker 1: numbness and tingling in my hands and my feet that
• 20:30
  Speaker 1: will alternate from side to side, the harshness in my
• 20:33
  Speaker 1: voice that would change, um, just the vision issues, the
• 20:44
  Speaker 1: ringing in the ears, just all of these different things
• 20:47
  Speaker 1: that I had to deal with growing up. And of course,
• 20:50
  Speaker 1: the headaches that was just simply diagnosis being migraines after
• 20:55
  Speaker 1: having the stroke and then finding out that I had
• 20:59
  Speaker 1: Chiari and also a brain aneurysm at the same time.
• 21:02
  Speaker 1: Those were things that I did not... know had it
• 21:07
  Speaker 1: not been for the stroke. I would not know that
• 21:11
  Speaker 1: I was living with this rare condition. And I will
• 21:16
  Speaker 1: say over the last few years, there have been more
• 21:20
  Speaker 1: people being diagnosed with Chiari. And there are some related
• 21:24
  Speaker 1: conditions that are with Chiari. So Make sure that you
• 21:32
  Speaker 1: are watching my page on Facebook because I've been sharing
• 21:38
  Speaker 1: tidbits about QRI malformation all month so far. So tomorrow
• 21:44
  Speaker 1: there'll be a new update about it. But having a
• 21:53
  Speaker 1: truly strong support system changes lives. Because when you have
• 21:59
  Speaker 1: that support system, you have other people becoming friends or
• 22:05
  Speaker 1: befriending people who deal with the similar conditions. They may
• 22:10
  Speaker 1: not have all the symptoms that you deal with dealing
• 22:12
  Speaker 1: with Chiari, but they can relate in the sense of
• 22:16
  Speaker 1: having some of these issues and even having the issues
• 22:20
  Speaker 1: with finding the right doctors, finding the right neurologist, finding
• 22:26
  Speaker 1: the right medications. having someone that you can discuss these
• 22:30
  Speaker 1: things with is very, very beneficial. And it's a wonderful
• 22:34
  Speaker 1: thing when you have that level of understanding from someone
• 22:39
  Speaker 1: else who is dealing with something similar. It also requires
• 22:46
  Speaker 1: being able to listen, understand, having patience and having respect
• 22:51
  Speaker 1: and being willing to educate, not just yourself, but others
• 22:56
  Speaker 1: who are willing to learn how to be supportive of
• 23:00
  Speaker 1: you and not just look and say, oh, well, just
• 23:04
  Speaker 1: take a nap. You'll feel better if you just sleep. Well,
• 23:08
  Speaker 1: maybe you shouldn't eat this. Maybe you shouldn't eat that.
• 23:11
  Speaker 1: All of those things are, is one of those things
• 23:18
  Speaker 1: where people are quick to say, well, you shouldn't be
• 23:21
  Speaker 1: eating that or you shouldn't, you should rest more. You
• 23:26
  Speaker 1: should walk more, you should do this more, you should
• 23:30
  Speaker 1: do that more. But those are people who are not
• 23:33
  Speaker 1: living with the condition themselves. So it's easy to say, hey,
• 23:41
  Speaker 1: it looks good, it sounds good, but it's not always beneficial.
• 23:45
  Speaker 1: And also, you don't have to be so to interrogate
• 23:55
  Speaker 1: people when they are sharing with you what it is
• 23:59
  Speaker 1: that they are going through and what it is that
• 24:03
  Speaker 1: they may need from you. And sometimes they may just
• 24:06
  Speaker 1: need you just to listen to them then. Sometimes they
• 24:10
  Speaker 1: may ask for some solutions to, hey, I'm dealing with
• 24:16
  Speaker 1: this symptom today. What have you tried to eliminate this
• 24:21
  Speaker 1: type of pain or this ailment or whatever? Being able
• 24:27
  Speaker 1: to offer a solution without saying, well, this is what
• 24:32
  Speaker 1: worked for me. Okay, that may have worked for you.
• 24:36
  Speaker 1: It may not work for me. Or ask the question,
• 24:40
  Speaker 1: have you tried this? And if you did, what was
• 24:43
  Speaker 1: the outcome? How long ago did you try this? Just
• 24:47
  Speaker 1: being able to ask questions without making it seem as
• 24:50
  Speaker 1: if you are a know-it-all. Because we don't know-it-all. Um,
• 24:58
  Speaker 1: I don't know a lot about, um, all the different
• 25:02
  Speaker 1: medications that are offered. I know the ones that I've taken.
• 25:06
  Speaker 1: I know more of the natural medicines that actually have
• 25:10
  Speaker 1: helped me. And I only take one prescription medication that
• 25:17
  Speaker 1: helps eliminate my, um, migraines and to where I'm not
• 25:24
  Speaker 1: experiencing them as frequently as I was. And also I've
• 25:29
  Speaker 1: learned what foods trigger certain things. And so when you
• 25:33
  Speaker 1: are mindful of those things, you tend to know what
• 25:37
  Speaker 1: is beneficial and what's not and how to navigate through
• 25:43
  Speaker 1: dealing with Chiari. But don't feel guilty for meeting people.
• 25:52
  Speaker 1: Don't feel guilty for asking for help. Be consistent and
• 25:56
  Speaker 1: be clear when you're asking for help so that they
• 26:01
  Speaker 1: know what type of help you actually need if you
• 26:04
  Speaker 1: are going to say that you need help. I'm struggling,
• 26:09
  Speaker 1: like I said, with that battle because I don't always
• 26:12
  Speaker 1: want to ask. And I'm getting better at doing that.
• 26:22
  Speaker 1: But I ain't going to keep you all long. I'm
• 26:25
  Speaker 1: about to get off of here because Chiari is a
• 26:32
  Speaker 1: topic that has a lot of different layers that goes
• 26:38
  Speaker 1: to it that we could talk about for hours. And
• 26:42
  Speaker 1: it seems like I'm rambling, going in and out about
• 26:47
  Speaker 1: it as a whole. But this is something I've definitely
• 26:50
  Speaker 1: lived with. For the last, well, literally my whole life,
• 26:54
  Speaker 1: but the actual diagnosis, not until 2009. And it's hard
• 27:02
  Speaker 1: to navigate some days because I can tell somebody that
• 27:10
  Speaker 1: I deal with a brain disorder and they'll look at
• 27:12
  Speaker 1: me and look like, no, you don't. You don't look
• 27:16
  Speaker 1: like nothing is wrong with you. You don't sound like
• 27:19
  Speaker 1: nothing's wrong with you. You don't walk like nothing's wrong
• 27:23
  Speaker 1: with you. That's the moment. That's in this moment right now.
• 27:29
  Speaker 1: That don't mean 10 minutes from now, I'm going to
• 27:31
  Speaker 1: be able to do that. Five minutes from now, I
• 27:34
  Speaker 1: might not be able to do that. That's just how
• 27:37
  Speaker 1: predictable Kiari is. And I can't tell you that today
• 27:44
  Speaker 1: is going to be wonderful. But I will say today
• 27:47
  Speaker 1: has been great. Tomorrow, will I have some issues?
• 27:51
  Speaker 3: I don't know.
• 27:53
  Speaker 1: And the day could start out really good and it
• 27:56
  Speaker 1: could be really bad. I just, I don't know. It's
• 28:01
  Speaker 1: just that unpredictable. We were out at dinner the other
• 28:09
  Speaker 1: day and I was fine until I got out of
• 28:13
  Speaker 1: the car to walk into the restaurant And I had
• 28:18
  Speaker 1: to grab on to him because I got dizzy. Now,
• 28:22
  Speaker 1: we were already walking to go inside the restaurant. And
• 28:28
  Speaker 1: he didn't know. But he was like, what's wrong? I
• 28:31
  Speaker 1: was like, I got dizzy. So I got to hold
• 28:34
  Speaker 1: on to you. He was like, how? I can't tell
• 28:38
  Speaker 1: you how. This is just what happens. So don't let
• 28:42
  Speaker 1: me fall.
• 28:43
  Speaker 5: So.
• 28:44
  Speaker 1: It's just those things that happen randomly. I don't know.
• 28:48
  Speaker 1: There's no rhyme or reason to this. It is not
• 28:51
  Speaker 1: a drop in my blood pressure. It's not any of
• 28:54
  Speaker 1: those things that you would think. My blood pressure didn't drop.
• 29:00
  Speaker 1: My blood sugar didn't drop. None of these things are
• 29:04
  Speaker 1: the issue. My blood pressure has actually been very good
• 29:07
  Speaker 1: here lately. And that was one of the issues that
• 29:11
  Speaker 1: I had to fight to get my primary care provider
• 29:15
  Speaker 1: to understand that when you're in a heightened state of
• 29:19
  Speaker 1: pain daily, your blood pressure is going to be a
• 29:23
  Speaker 1: little on the higher side, but not to where it's
• 29:27
  Speaker 1: stroke-like levels. And so trying to regulate that with a
• 29:33
  Speaker 1: blood pressure medication is not feasible for me. because it
• 29:38
  Speaker 1: doesn't regulate the blood pressure because it's not a blood
• 29:41
  Speaker 1: pressure issue. It's a pain issue. And so once I
• 29:49
  Speaker 1: learned that, trying to get him to understand that, it
• 29:53
  Speaker 1: took some time. And it took him having to have
• 29:57
  Speaker 1: a coworker who was diagnosed with the same condition for
• 30:01
  Speaker 1: him to truly understand what it was that I had
• 30:05
  Speaker 1: been explaining to him. But just know when you are
• 30:16
  Speaker 1: dealing with someone who's dealing with a chronic illness, be
• 30:22
  Speaker 1: a good source of support for them. Let them know
• 30:27
  Speaker 1: that they're not being a burden on you by asking
• 30:31
  Speaker 1: for help. Surround yourself with people who can see you
• 30:36
  Speaker 1: and who can hear you when you're silent because that's
• 30:40
  Speaker 1: just as important as anything else. And celebrate your good days.
• 30:47
  Speaker 1: Give yourself grace on the bad days. Know that having
• 30:53
  Speaker 1: a bad day and needing support doesn't erase the fact
• 30:57
  Speaker 1: that you are strong because you're doing what you have
• 31:01
  Speaker 1: been doing. Yeah, blood pressure signals are more than most
• 31:06
  Speaker 1: people realize than just having pain and dealing with other issues.
• 31:11
  Speaker 1: Most people don't, they don't do the research. So they
• 31:15
  Speaker 1: don't understand that, that the blood pressure has more than
• 31:19
  Speaker 1: just one signal. to let you know that something's wrong,
• 31:24
  Speaker 1: but your blood pressure is going to be raised when
• 31:28
  Speaker 1: you're in pain. And when you're in a heightened state
• 31:33
  Speaker 1: of pain consistently, your blood pressure is going to stay
• 31:37
  Speaker 1: at a normal pace for you. And when you know
• 31:44
  Speaker 1: what that blood pressure looks like, you have to be
• 31:48
  Speaker 1: able to advocate that for yourself. Because if you don't
• 31:51
  Speaker 1: know what you're normal blood pressure is. And it doesn't
• 31:56
  Speaker 1: have you looking crazy or whatever, because the problem with
• 32:01
  Speaker 1: some doctors that I have found is that they are
• 32:05
  Speaker 1: strictly textbook. And when they're strictly textbook, that's all they
• 32:12
  Speaker 1: go by is what they learned in medical school. Not
• 32:15
  Speaker 1: understanding that when you are technically treating people, you are
• 32:19
  Speaker 1: treating the whole person. not just the actual disease or
• 32:24
  Speaker 1: the condition are therefore up. So you have to learn
• 32:29
  Speaker 1: and you have to be able to listen to the
• 32:31
  Speaker 1: patient as they're telling you what they are experiencing and
• 32:35
  Speaker 1: what they are dealing with, because it is not just
• 32:38
  Speaker 1: a textbook treatment because that doesn't always work because each
• 32:43
  Speaker 1: one of us are individuals and we have to advocate
• 32:48
  Speaker 1: and figure out what it is for us. Yes, not
• 32:52
  Speaker 1: everybody is a textbook case. And when you run into
• 32:56
  Speaker 1: those patients who are not just textbook cases, this is
• 33:00
  Speaker 1: where it actually comes into being able to treat the
• 33:04
  Speaker 1: person as a whole and not just the condition itself.
• 33:10
  Speaker 1: And it's like taking your car in. You went in
• 33:13
  Speaker 1: for an oil change. You find out you need brakes
• 33:17
  Speaker 1: and rotors. you went in for one thing they saying
• 33:22
  Speaker 1: you need something else so you gotta be able to
• 33:25
  Speaker 1: know exactly what's going on and being able to relate
• 33:29
  Speaker 1: it to your doctors and they have to be willing
• 33:32
  Speaker 1: to listen and I can honestly say that I am
• 33:35
  Speaker 1: grateful that I found some providers who really listen and
• 33:45
  Speaker 1: hear me because I will argue with you in a
• 33:48
  Speaker 1: heartbeat Because you ain't finna give me just a medication
• 33:51
  Speaker 1: because you think it's going to work because of the
• 33:54
  Speaker 1: research or whatever that you've done on it. And say, hey, well,
• 33:58
  Speaker 1: we're just going to try this for a little while
• 34:01
  Speaker 1: and see how it does. Try to know who. I'm
• 34:04
  Speaker 1: not the guinea pig. So we're not going to try
• 34:07
  Speaker 1: nothing unless we can get some clear understanding and some
• 34:12
  Speaker 1: boundaries established. hey, listen, this don't even sound like this
• 34:16
  Speaker 1: is going to be beneficial to me. So we ain't
• 34:19
  Speaker 1: even going to try it. I ain't going to waste
• 34:20
  Speaker 1: your time. You ain't no need for you to send
• 34:22
  Speaker 1: that over to the pharmacy because I ain't going to
• 34:24
  Speaker 1: go pick it up. It's just not going to happen.
• 34:27
  Speaker 1: So learning to raise your hand when you need help,
• 34:34
  Speaker 1: learning to extend a phone call, a text to somebody
• 34:38
  Speaker 1: to say, hey, look, today is a bad day, even
• 34:41
  Speaker 1: if it's an emotional bad day. reach out, let somebody know.
• 34:46
  Speaker 1: And if you have the friends that I have, they
• 34:51
  Speaker 1: know when I ain't having a good day and they,
• 34:55
  Speaker 1: they gonna be quick to say, well, then you need
• 34:57
  Speaker 1: to go lay down, go and put the phone down,
• 34:59
  Speaker 1: put the laptop down, go and sit down somewhere and
• 35:03
  Speaker 1: I'll check on you later. So I'm glad that I
• 35:07
  Speaker 1: have those people around me and I will be back on, uh,
• 35:14
  Speaker 1: thursday i think it's the 24th or the 27th one
• 35:17
  Speaker 1: of them days yeah um don't don't quote because i
• 35:20
  Speaker 1: ain't looking at the calendar but i'm going to continue
• 35:23
  Speaker 1: to post about kiari malformation all month if you can
• 35:27
  Speaker 1: one of these days wear purple in honor of kiari
• 35:31
  Speaker 1: malformation oh yeah and them grandbabies honey my my um
• 35:37
  Speaker 1: my granddaughter honey she will tell me when she's here
• 35:40
  Speaker 1: up at the house. Okay, TT, we need to check
• 35:43
  Speaker 1: your blood pressure and she will get the blood pressure cuff, honey.
• 35:47
  Speaker 1: And she'll put it on me and tell me, okay,
• 35:50
  Speaker 1: you need to be still because we need to check
• 35:52
  Speaker 1: your numbers. Okay. Well, ma'am, I got you. And we,
• 35:57
  Speaker 1: we do what we need to do because she, she
• 36:01
  Speaker 1: says she's my nurse and my doctor and she's going
• 36:03
  Speaker 1: to take good care of me. And she does. I
• 36:06
  Speaker 1: can't tell her she don't. Um, But, child, she's something else.
• 36:13
  Speaker 1: But Chiari malformation is one of those conditions that you
• 36:18
  Speaker 1: don't look like what you're going through. A lot of
• 36:21
  Speaker 1: us don't. But it is a truly unpredictable condition. But
• 36:26
  Speaker 1: get you a good support system that you can actually
• 36:29
  Speaker 1: depend on on hard days. Because when you are having
• 36:34
  Speaker 1: a hard day, being able to lean on somebody is
• 36:37
  Speaker 1: very beneficial. So just reach out, let them know, but
• 36:44
  Speaker 1: build that support system. Family, friends, coworkers, whatever it may be,
• 36:51
  Speaker 1: build your circle of support and continue knowing that you
• 36:56
  Speaker 1: are not alone in what you're going through. And help
• 37:00
  Speaker 1: comes in numbers sometimes. And it's okay. And you are
• 37:05
  Speaker 1: still stronger than what you even know. Because God has
• 37:09
  Speaker 1: kept you here for a purpose. So continue to show
• 37:12
  Speaker 1: up and do what he's telling you to do. And
• 37:17
  Speaker 1: until then, I am going to say this and then
• 37:20
  Speaker 1: I am closing. And you know what I'm about to say.
• 37:23
  Speaker 1: And that is stay out of God's business. The only
• 37:25
  Speaker 1: thing he needs you to do is be obedient to
• 37:28
  Speaker 1: what he's called you to do. So until I see
• 37:30
  Speaker 1: you again, have a good night.
• 37:41
  Speaker 2: Find that sound turning ashes into messages, lifting others from
• 37:45
  Speaker 2: the ground. She knows healing is a journey and purpose
• 37:50
  Speaker 2: has a cost. But nothing is ever wasted when God
• 37:56
  Speaker 2: restores what's lost. Believe in the journey. Believe in the climb.
• 38:01
  Speaker 2: God can turn your pain into power over time. Believe
• 38:05
  Speaker 2: in the journey. Don't give up the fight. There are
• 38:09
  Speaker 2: wings in your struggle and hope.
• 38:11
  Speaker 4: In the night.
• 38:12
  Speaker 2: Through every mountain, through every valley, through every tear you
• 38:17
  Speaker 2: have to release. Keep moving, keep growing, keep trusting the process.