Latest / DA CREW Podcast / DELAYED BUT NEVER DENIED THE PODCAST W/ LATONYA MICHELLE | EVERY 2ND MONDAY & 4TH FRIDAY 8PM EST LIVE ON DA CREW PODCAST

Transcript

DELAYED BUT NEVER DENIED THE PODCAST W/ LATONYA MICHELLE | EVERY 2ND MONDAY & 4TH FRIDAY 8PM EST LIVE ON DA CREW PODCAST · DA CREW Podcast

• 0:22
  Speaker 1: USTe tactics of the dusty statistastic starts. The US capital Caractice,
• 0:43
  Speaker 1: the Stars of tune Us has not past fast Coastal.
• 0:53
  Speaker 2: Has best friend, my sister Trevita, and we will be
• 1:24
  Speaker 2: talking about Kiari malformation. But before we begin, I would
• 1:30
  Speaker 2: like to go to the throne and pray Heavenly Father
• 1:34
  Speaker 2: is once again we call up on your name. We
• 1:37
  Speaker 2: asked that you be in the midst of the conversation tonight.
• 1:40
  Speaker 2: We asked at the words and the thought behind it
• 1:45
  Speaker 2: reaches who it needs to reach, and is taken in
• 1:50
  Speaker 2: the way that you would have it taken. I also
• 1:52
  Speaker 2: would like to thank you for traveling, grace and mercy.
• 1:57
  Speaker 2: I've been on the go all weekend, as you know, Lord,
• 2:00
  Speaker 2: but I thank you for keeping me safe. In Jesus' name,
• 2:03
  Speaker 2: I pray man Trevita, Yes, ma'am, how are you? I
• 2:13
  Speaker 2: am blessed in holly, Yes, ma'am, Yes, ma'am. So I
• 2:20
  Speaker 2: wanted to talk to you tonight about kr remlfirmation. I
• 2:25
  Speaker 2: know that I know that that's a condition that you
• 2:29
  Speaker 2: are currently dealing with and have been dealing with for
• 2:32
  Speaker 2: quite some time. Could you tell the people what ki
• 2:35
  Speaker 2: remalfirmation is.
• 2:38
  Speaker 3: Uh Yes, Kiri information is a serious neurological condition that
• 2:43
  Speaker 3: does not have a cure for it. Unfortunately, most people
• 2:49
  Speaker 3: think that the decompression surgery is a cure, but it
• 2:54
  Speaker 3: is not. It is just to help to slow down
• 2:58
  Speaker 3: the progressiveness of the symptoms that we each deal with,
• 3:04
  Speaker 3: and it is you know, it's a progressive condition, but
• 3:09
  Speaker 3: it also helps to slow down the progression of some
• 3:13
  Speaker 3: of the symptoms and to alleviate the pain that is
• 3:16
  Speaker 3: associated with kyr.
• 3:19
  Speaker 2: Okay, how long have you had it or how long
• 3:23
  Speaker 2: have you known that you've had it.
• 3:27
  Speaker 3: I've known that I've had it since two thousand and nine.
• 3:32
  Speaker 3: But from what I understand is that I was born
• 3:36
  Speaker 3: with this condition, just misdiagnosed for years.
• 3:42
  Speaker 2: So I was reading where it's a condition in which
• 3:46
  Speaker 2: brain tissue extends into the spinal canal present have birth.
• 3:51
  Speaker 2: It occurs when part of the school is abnormally small
• 3:55
  Speaker 2: or miss mishappened's shaping. I'm sorry. Symptoms include pain and
• 4:00
  Speaker 2: trouble swallowing. Treatment may involve monetary and surgery. Medication may
• 4:06
  Speaker 2: be given to manage symptoms symptom like pains, but there
• 4:09
  Speaker 2: is no cure. How has it affected your life.
• 4:14
  Speaker 3: It has affected my life in many, many different ways.
• 4:19
  Speaker 3: Number One, I have a headache every day.
• 4:23
  Speaker 1: It is.
• 4:26
  Speaker 3: If you've ever had a migraine headache and you multiply
• 4:29
  Speaker 3: that by ten with the burning sensation in the neck
• 4:32
  Speaker 3: and shoulders. That is what I'm dealing with most of
• 4:36
  Speaker 3: the time. It's not easy. I have issues with my
• 4:44
  Speaker 3: balance at times. I have issues with holding things at times,
• 4:49
  Speaker 3: like it's just random. I can drop something that seems
• 4:54
  Speaker 3: as if I have a good hold on it, but
• 4:56
  Speaker 3: I don't. My knees and stuff will get with at times.
• 5:01
  Speaker 3: So it causes a lot of different things and trying
• 5:07
  Speaker 3: to live a sense of normalcy. My normal is different
• 5:15
  Speaker 3: from somebody else. It's normal. I'll say that.
• 5:21
  Speaker 2: You say you have headaches more days than not. How
• 5:26
  Speaker 2: do you alleviate the pain?
• 5:29
  Speaker 3: I honestly don't alleviate the pain. I've just learned certain
• 5:34
  Speaker 3: things to kind of ease it, but not alleviate it.
• 5:41
  Speaker 3: I used to take medications that would keep me bed ridden,
• 5:48
  Speaker 3: so to speak, to where I was just sleeping and
• 5:53
  Speaker 3: at the time. When you have small kids, teenage kids,
• 5:57
  Speaker 3: that's not always the best thing to do because that's
• 5:59
  Speaker 3: when they tend to do whatever they want to do,
• 6:03
  Speaker 3: and that was not a good thing. That was not
• 6:05
  Speaker 3: a good good space to be into, where you're just
• 6:08
  Speaker 3: functioning off of sleep and you're only up for moments
• 6:13
  Speaker 3: to eat and take the medication. So I've learned little
• 6:18
  Speaker 3: tricks that actually help, and that's usually a concoction of
• 6:26
  Speaker 3: basically extra streme talanol and ben a drill and go
• 6:31
  Speaker 3: to sleep for a little while and then it helps
• 6:34
  Speaker 3: me to function. But most of the time I've just
• 6:37
  Speaker 3: learned to not take the medicine because I don't like
• 6:41
  Speaker 3: being groggy all the time, because benadryl is that lingering
• 6:45
  Speaker 3: effect of being sleepy, and I don't.
• 6:47
  Speaker 2: Like that right me either, me either, I mean I
• 6:53
  Speaker 2: like a good sleep, I do.
• 6:54
  Speaker 3: But yeah, But.
• 7:02
  Speaker 2: Have doctors tried to help you? Come up with something
• 7:07
  Speaker 2: to see if they could? I know they say that
• 7:11
  Speaker 2: there's no cure, but I do believe in God, and
• 7:13
  Speaker 2: I believe that God has a cure for everything, and
• 7:17
  Speaker 2: I believe that He puts doctors in places to be
• 7:21
  Speaker 2: able to help in that sense, Have doctors tried anything
• 7:27
  Speaker 2: with you to help?
• 7:30
  Speaker 3: I have tried the botox injections. That was an experience
• 7:35
  Speaker 3: in itself. I got thirty six injections at one time.
• 7:41
  Speaker 3: It was an experience to say the least. It helped
• 7:46
  Speaker 3: with my migrains, but it didn't really help with the
• 7:49
  Speaker 3: kari with the different symptoms that I was experiencing. It's
• 7:54
  Speaker 3: frustrating when you don't deal with the kiri specialist in sense,
• 8:00
  Speaker 3: because if you go to a neurosurgeon who doesn't specialize
• 8:05
  Speaker 3: in krii the ones that I've dealt with, they their
• 8:10
  Speaker 3: quick solution is to have the surgery. However, the surgery
• 8:14
  Speaker 3: is not beneficial to each person because each kori person
• 8:19
  Speaker 3: who deals with k they're gonna deal with different symptoms
• 8:22
  Speaker 3: and different aspects, and so their number one thing is
• 8:26
  Speaker 3: to try to have the surgery to see what symptoms
• 8:31
  Speaker 3: it helps with and see what symptoms it doesn't help with.
• 8:36
  Speaker 3: But in my opinion, for me personally, that's just not
• 8:41
  Speaker 3: a gamble I'm willing to take. So me and God
• 8:44
  Speaker 3: have been rocking this thing, and so I trust him
• 8:49
  Speaker 3: better than I trust the doctors here on earth.
• 8:54
  Speaker 2: Right right, I know that this month is all also
• 9:00
  Speaker 2: Kiauri malformation Awareness month, as it is hydrocephalous awareness. Doing
• 9:08
  Speaker 2: some reading, I realized that they both are connected. In
• 9:12
  Speaker 2: a certain way, and they both type with spina biffita.
• 9:16
  Speaker 2: Have you been tested for any of things?
• 9:20
  Speaker 1: Uh?
• 9:21
  Speaker 3: No, not spinal biffiita or any thing like that. However,
• 9:27
  Speaker 3: I do have a I guess you could say a
• 9:30
  Speaker 3: conditional offset that is related to QI with is the
• 9:37
  Speaker 3: epilasia Apartioli's continuum. And that's basically where I have localized
• 9:42
  Speaker 3: seizures to the left side of my body. They won't
• 9:45
  Speaker 3: ever turn into Grandma seizures or anything, but they are
• 9:49
  Speaker 3: localized seizures to the left side of my body. And
• 9:54
  Speaker 3: I noticed that when I get overly stressed or anything
• 9:58
  Speaker 3: like that, are having some anxiet mighty issues, is when
• 10:01
  Speaker 3: those tend to be triggered. So I tend to eliminate
• 10:05
  Speaker 3: any stress or anything that's going to cause me some stress.
• 10:09
  Speaker 3: You got to go on about your pieces.
• 10:12
  Speaker 2: Right right right? What would you like the people to
• 10:17
  Speaker 2: know about Kiari?
• 10:20
  Speaker 3: It's an invisible condition. Most people don't understand that just
• 10:24
  Speaker 3: because I look like I'm okay doesn't necessarily mean that
• 10:28
  Speaker 3: I am okay. Like today, I am hurting. My head hurts.
• 10:33
  Speaker 3: That's why number one, I got a glasses on. Number
• 10:36
  Speaker 3: two my neck and shoulders are on fire because it's
• 10:41
  Speaker 3: very tight, and it hurts that just because we look
• 10:47
  Speaker 3: like we're good and that we sound like we're okay,
• 10:51
  Speaker 3: we're not always okay. And as you can hear, my
• 10:54
  Speaker 3: voice is starting to do whatever this is. Yeah, this
• 10:58
  Speaker 3: is another symptom that I have to deal with when
• 11:02
  Speaker 3: I am in the middle of a flair. And so
• 11:06
  Speaker 3: it can come like I can wake up in the
• 11:08
  Speaker 3: morning and be perfectly fine. Headache is minimal, but as
• 11:14
  Speaker 3: the day goes by, the more that I'm doing, I
• 11:17
  Speaker 3: can become easily overwhelmed. And that's one of the things
• 11:21
  Speaker 3: that I want people to understand that just because we
• 11:24
  Speaker 3: look like we're okay and that we have no problems
• 11:27
  Speaker 3: and that we have no issues, there is an underlying
• 11:30
  Speaker 3: cause and we just want to be treated with the
• 11:34
  Speaker 3: same respect of a normal person that isn't dealing with
• 11:39
  Speaker 3: anything like this. Because a serious neurological condition of brain
• 11:44
  Speaker 3: injury or whatever you want to call it, it is
• 11:48
  Speaker 3: something that affects every aspect of our body. Because KRI
• 11:53
  Speaker 3: affects the cerebellum, which is the main component in the
• 11:56
  Speaker 3: brain that controls bodily functions, and so balance issues, voice issues, tetanitis,
• 12:06
  Speaker 3: which is the ringing in the ears, vision problems, balance issues.
• 12:11
  Speaker 3: Not only me having a stroke is also contributing to
• 12:15
  Speaker 3: some of the things that I have to deal with.
• 12:17
  Speaker 3: On top of y'all, these little fruit flies is get
• 12:22
  Speaker 3: on my nerves. They are well, I got some bananas
• 12:28
  Speaker 3: in here too, so they not helping because you know
• 12:31
  Speaker 3: your nephew he been sick. But anyway, letting them know
• 12:37
  Speaker 3: that if I drop something, don't laugh. You know, if
• 12:41
  Speaker 3: if my legs go weak in the middle of just walking,
• 12:45
  Speaker 3: understand that I didn't trip over anything. My legs literally
• 12:49
  Speaker 3: just gave out. And it's one of those things that
• 12:53
  Speaker 3: I have to be mindful of because I used to
• 12:56
  Speaker 3: be very active, running and things of thatwature. So a
• 13:00
  Speaker 3: lot of those things I can no longer do. Like
• 13:03
  Speaker 3: I love to clift weights, I love to run, I
• 13:06
  Speaker 3: love to do those types of things, but I can't
• 13:08
  Speaker 3: do those things anymore. And that's been frustrating for me
• 13:12
  Speaker 3: because I can't do them anymore. So I have to
• 13:15
  Speaker 3: find things that I can do that don't gyrate my head,
• 13:22
  Speaker 3: like just no jumping, no you know, heavy lifting, things
• 13:26
  Speaker 3: of that nature. And I'm still a hard headed and stuffer.
• 13:29
  Speaker 3: I'm gonna do it anyway, but I try to not
• 13:33
  Speaker 3: do it so much.
• 13:38
  Speaker 2: I understand we are both a part of the hard
• 13:41
  Speaker 2: head committee. I believe.
• 13:50
  Speaker 3: Girl good.
• 13:54
  Speaker 2: Did he said that? Go ahead?
• 13:59
  Speaker 3: No, you go?
• 14:01
  Speaker 2: DD said what I was saying that d D said that.
• 14:05
  Speaker 2: She said that I believe in a good sleep aka nap.
• 14:09
  Speaker 2: I don't take naps. I take sleep. Yeah you don't.
• 14:12
  Speaker 3: You don't really do naps. Naps are literally thirty to
• 14:16
  Speaker 3: forty five minutes. Basically, that is what a nap is.
• 14:20
  Speaker 3: You go to sleep. Yeah, you get in the bed,
• 14:23
  Speaker 3: under the cover and all of the above. That is
• 14:26
  Speaker 3: not that's not what that is. But yeah, see noll no, yeah, see.
• 14:36
  Speaker 3: I like a good nap better to forty five minutes.
• 14:40
  Speaker 3: I'm good and I'm ready to go. But I'm not.
• 14:42
  Speaker 2: Big on naps.
• 14:44
  Speaker 3: Like me taking a nap. I really don't feel good
• 14:48
  Speaker 3: to take a nap, Like I have to not feel
• 14:52
  Speaker 3: good to take a nap. But I've been trying to
• 14:55
  Speaker 3: do better and get a nap in here and there.
• 14:57
  Speaker 3: But yeh, it's just not working out for me.
• 15:02
  Speaker 2: Because I know my niece and nephews fuss about about
• 15:05
  Speaker 2: you not taking naps.
• 15:08
  Speaker 3: Especially yes, yes, they.
• 15:17
  Speaker 2: Yeah, so we we need you to do better and
• 15:21
  Speaker 2: invest in some naps ma'am.
• 15:24
  Speaker 3: Yeah, My my nap bank is is actually full of
• 15:29
  Speaker 3: deposits I haven't taken. I've only taken very few withdrawals
• 15:34
  Speaker 3: on those naps, and I give fussed that about that
• 15:37
  Speaker 3: quite regularly. I know you do.
• 15:42
  Speaker 2: I know you do. I know that you're also an
• 15:48
  Speaker 2: author and you also have your own publishing brand and company.
• 15:55
  Speaker 2: How has ha been, KII? How am I trying to
• 16:00
  Speaker 2: with this? How has that inspired you to where you
• 16:03
  Speaker 2: are today?
• 16:05
  Speaker 3: Number one? I will say it has inspired me to
• 16:09
  Speaker 3: actually stay focused on what I can do because Keyarri,
• 16:15
  Speaker 3: like I said, it is a progressive condition. And also
• 16:18
  Speaker 3: having a stroke, it forced me to stay active, keep
• 16:24
  Speaker 3: my brain active, keep my brain moving, because if I
• 16:28
  Speaker 3: don't use, you know, as joh saying goes, what you
• 16:33
  Speaker 3: don't use, you lose, and I refuse to you know
• 16:40
  Speaker 3: what knowledge I have, and so I pushed myself to
• 16:43
  Speaker 3: actually stay on top of everything. Like when I started
• 16:49
  Speaker 3: the writing journey, I had no idea about formatting, I
• 16:54
  Speaker 3: didn't know how to edit, I didn't know any of
• 16:57
  Speaker 3: those things. I knew how to write, but as far
• 17:01
  Speaker 3: as writing and putting a book together or anything like that,
• 17:05
  Speaker 3: I had no idea. And writing the second book, I
• 17:09
  Speaker 3: wrote about Kari and I wrote about my stroke and
• 17:13
  Speaker 3: how I was able to continue to raise my children,
• 17:17
  Speaker 3: and it was titled Struggle, Strength and Success or my
• 17:20
  Speaker 3: information won't Win because I refuse to allow KR to
• 17:24
  Speaker 3: control my life in the sense of being stuck in
• 17:28
  Speaker 3: the bed and being just not having the quality of
• 17:35
  Speaker 3: life that I feel I deserve, and so being able
• 17:40
  Speaker 3: to push myself and teach myself the things that I need.
• 17:45
  Speaker 3: I want to make sure that any client that I
• 17:47
  Speaker 3: get who's wanting to write a book or anything like that,
• 17:51
  Speaker 3: I want them to know that I've started where they are,
• 17:55
  Speaker 3: and so I know how to get them to the
• 17:57
  Speaker 3: next space, which is becoming. And it's a greater experience
• 18:05
  Speaker 3: when you can actually teach something, take somebody from beginning
• 18:11
  Speaker 3: to the finished product, you know, and through it myself,
• 18:17
  Speaker 3: I can take you from start to finish.
• 18:19
  Speaker 2: You know.
• 18:20
  Speaker 3: And I'm always going to push other people when I
• 18:24
  Speaker 3: see that they can do. I don't believe in limitations,
• 18:29
  Speaker 3: I'll say that. And so if I come in contact
• 18:33
  Speaker 3: with somebody and they feel like they can't do something.
• 18:36
  Speaker 3: Can't ends up getting out of their vocabulary because can't
• 18:39
  Speaker 3: doesn't exist. It's always where can't, could and can and shell,
• 18:45
  Speaker 3: and so you have to replace that can't word with
• 18:48
  Speaker 3: can and will and shell. And so when you do that,
• 18:52
  Speaker 3: that changes the perspective on people.
• 18:59
  Speaker 2: Well, I like to pat myself on the back for
• 19:05
  Speaker 2: getting you started to write and because I wrote my
• 19:10
  Speaker 2: first book in twenty eighteen, and I came to you
• 19:13
  Speaker 2: as fast as I could listen. You need to put
• 19:16
  Speaker 2: your poetry in books. You need to do this, that
• 19:18
  Speaker 2: and the third. And you looked at me like you're
• 19:22
  Speaker 2: looking right now, because your face says a whole lot.
• 19:25
  Speaker 2: And it's a humbling experience for me watching you grow
• 19:32
  Speaker 2: into where you are now, going from writing writing a
• 19:38
  Speaker 2: book and not being too happy with how it came
• 19:41
  Speaker 2: out to actually having your own publishing business where you
• 19:46
  Speaker 2: are taking in clients and helping them get their brand
• 19:52
  Speaker 2: off the ground. My voice is gone. I've been on
• 19:54
  Speaker 2: the road all day. Okay, so I am struggling. I'm
• 20:01
  Speaker 2: not going to keep you because I know you said
• 20:03
  Speaker 2: your head is hurting. But before I let you go,
• 20:06
  Speaker 2: is there any final thoughts that you would like to share?
• 20:09
  Speaker 2: With the audience.
• 20:13
  Speaker 3: Just be mindful of September is ki my information month.
• 20:21
  Speaker 3: Get to know someone who is dealing with an invisible condition,
• 20:27
  Speaker 3: not just Kiari, but hide yourselfhalss s, final befit, the lupus, MS,
• 20:35
  Speaker 3: Crohn's disease, anything that you cannot see with the visible eye,
• 20:39
  Speaker 3: because just because and I try not to be rude,
• 20:43
  Speaker 3: because you know, people will always say, well, you don't
• 20:46
  Speaker 3: look sick. And I try, I try really not to
• 20:51
  Speaker 3: be a smart you know what, but I have to
• 20:56
  Speaker 3: say sometimes you don't look stupid, but yet here we are,
• 21:01
  Speaker 3: because it's annoying for when somebody says you don't look sick.
• 21:06
  Speaker 3: I didn't know I needed to walk around with the
• 21:08
  Speaker 3: label on my face or my forehead that says, hey,
• 21:12
  Speaker 3: I'm sick. There's something wrong with me. Yeah, I don't
• 21:16
  Speaker 3: feel like I need to do that.
• 21:17
  Speaker 1: Now.
• 21:17
  Speaker 3: There are days when I feel like like my shirt
• 21:20
  Speaker 3: says we need space. Me and Kiari do need space.
• 21:23
  Speaker 3: We need to take a day apart.
• 21:25
  Speaker 2: But that's not you to happen.
• 21:28
  Speaker 3: So I'm learning to embrace what I have to deal
• 21:32
  Speaker 3: with with Kiari because it's just days where it is
• 21:36
  Speaker 3: not going to let up. It's gonna be hard, it's
• 21:39
  Speaker 3: going to be difficult, but I.
• 21:42
  Speaker 2: Choose to not give in.
• 21:45
  Speaker 3: And anybody that you know that is dealing with a
• 21:49
  Speaker 3: unseen illness, give them some grace because at some point
• 21:54
  Speaker 3: you're gonna be dealing with something. It may not be
• 21:57
  Speaker 3: you personally, but it may be someone that you know,
• 22:00
  Speaker 3: So extend grace to someone else because it is not
• 22:04
  Speaker 3: easy to go from what you knew was normal to
• 22:11
  Speaker 3: a new normal, because every day is a different day.
• 22:14
  Speaker 3: For me. I fear going to sleep number one, because
• 22:19
  Speaker 3: I had a stroke. I woke up different after having
• 22:23
  Speaker 3: that stroke, and I still tried to be in denial
• 22:27
  Speaker 3: about having the stroke because I was still going to
• 22:30
  Speaker 3: work until I couldn't feel my left arm, and then
• 22:34
  Speaker 3: I drove myself to the hospital because I was still
• 22:37
  Speaker 3: in denial of what a doctor had just told me.
• 22:41
  Speaker 3: So I'm very over and I'm very hard headed, and
• 22:46
  Speaker 3: I think that's part of the reason why God has
• 22:49
  Speaker 3: kept me here, and me and him we go back
• 22:51
  Speaker 3: and forth all the time, like, God, look here, I
• 22:54
  Speaker 3: don't know what you got on this agenda food, But
• 22:57
  Speaker 3: if there's something, there's a purpose, there's a reason, And
• 23:01
  Speaker 3: so I just want people to understand that keyr is
• 23:04
  Speaker 3: not an easy condition to deal with. We fight, we
• 23:09
  Speaker 3: are in pain, but we do what we are called
• 23:14
  Speaker 3: to do because a lot of us are not just existing,
• 23:19
  Speaker 3: but we're living. We're living the new normal. Like I'm
• 23:23
  Speaker 3: still able to drive, I'm still able to work, I'm
• 23:29
  Speaker 3: still able to do those things, but there are limits
• 23:32
  Speaker 3: to it. It is frustrating, it is hard, but love
• 23:38
  Speaker 3: somebody with grace, give them the grace that you would
• 23:42
  Speaker 3: expect to receive if you were on the other receiving
• 23:47
  Speaker 3: end of it.
• 23:48
  Speaker 2: But it's how can the people support you During kor
• 23:58
  Speaker 2: malformation month, the.
• 24:01
  Speaker 3: Color is purple, so if you want to wear purple
• 24:06
  Speaker 3: and make a post or something that says I love
• 24:10
  Speaker 3: someone who has kar. The other thing is you can
• 24:14
  Speaker 3: donate to the Kari Foundation. They usually do a walk
• 24:20
  Speaker 3: and if there's not one around here, maybe one day
• 24:23
  Speaker 3: I'll consider setting up a kor walk around here. But
• 24:28
  Speaker 3: there's a Conquer Kari Foundation that you can donate to.
• 24:34
  Speaker 3: And also if you're experiencing these things, because oftentimes we
• 24:40
  Speaker 3: are misdiagnosed. That was one of the things that I
• 24:43
  Speaker 3: was misdiagnosed for years with having KI. These are symptoms
• 24:47
  Speaker 3: that I noticed as a little girl and in my
• 24:51
  Speaker 3: early teens. Was not only the headaches because they were
• 24:55
  Speaker 3: I was diagnosed with just having my grains. That was it.
• 24:58
  Speaker 3: But these types kr your headaches do not last well.
• 25:03
  Speaker 3: They last longer than a week sometimes, and this was
• 25:08
  Speaker 3: one of the things, because a typical migraine will last
• 25:11
  Speaker 3: you maybe two to three days, but a headache can
• 25:15
  Speaker 3: last about a week, if not longer sometimes, and so
• 25:20
  Speaker 3: be mindful of that. Also advocate for yourself. I had
• 25:24
  Speaker 3: nose bleas, I have heart paputations, numbness and tingling in
• 25:30
  Speaker 3: my hands, in my feet where I used to think
• 25:32
  Speaker 3: that I had tied my shoes to type. But these
• 25:34
  Speaker 3: are things that people need to look out for when
• 25:38
  Speaker 3: dealing with KRI. And don't be afraid to ask for mrs.
• 25:43
  Speaker 3: Ask for those things, and ask for your medical records.
• 25:47
  Speaker 3: If you've been to the er and you know they
• 25:50
  Speaker 3: told you you just have migraines or whatever, make sure
• 25:53
  Speaker 3: you get a copy or written copy of your notes
• 25:57
  Speaker 3: from that visit at the er, simply because they may
• 26:01
  Speaker 3: tell you one thing in that room, but they have
• 26:04
  Speaker 3: noted in your chart something totally different. So when you
• 26:08
  Speaker 3: get that hard copy or visit. You're going to find
• 26:11
  Speaker 3: out more things of what they didn't tell you. So
• 26:15
  Speaker 3: always get that advocate for yourself, ask the necessary questions. Also,
• 26:20
  Speaker 3: don't take every prescription that the doctor prescribes for you
• 26:23
  Speaker 3: simply because some medications that they prescribe for you cause
• 26:28
  Speaker 3: ultimate ultimate other symptoms that you don't want to have
• 26:32
  Speaker 3: to deal with. So if you're on medication now that
• 26:36
  Speaker 3: it's supposed to be treating your headache, understand that it
• 26:39
  Speaker 3: could cause kidney damage later on, especially if they're telling you, well,
• 26:43
  Speaker 3: we're going to have to monitor your kidney's function six
• 26:48
  Speaker 3: months from now, so we'll have to cove you come
• 26:50
  Speaker 3: in and do this, and so be mindful of that.
• 26:54
  Speaker 3: One of the medications that they do use to treat KRII, topomax,
• 27:01
  Speaker 3: one of those that medicine I did not realize. I
• 27:04
  Speaker 3: had been on it for years, from two thousand and
• 27:06
  Speaker 3: nine until two thousand and eighteen, and so being on
• 27:14
  Speaker 3: that for so long, I did not realize that it
• 27:17
  Speaker 3: caused calcium build up until I had a kidney stone
• 27:21
  Speaker 3: for the very first time in twenty twenty, and so
• 27:26
  Speaker 3: when I had that kiddy zone, I'm a researcher. I
• 27:31
  Speaker 3: do research, and then I realized that this was a
• 27:34
  Speaker 3: medicine that I had been taking for years, and so
• 27:38
  Speaker 3: finding that out, it was like, Okay, yeah, we can't.
• 27:40
  Speaker 3: We can't do this, and if we do, make sure
• 27:43
  Speaker 3: that in moderation, that I'm doing the things that I can.
• 27:47
  Speaker 3: Even if I have to go back on this medication
• 27:49
  Speaker 3: later on down the line, I know what to do
• 27:52
  Speaker 3: to help myself to prevent the calcium build up again.
• 27:58
  Speaker 3: So just be mindful, don't always take every single prescription
• 28:02
  Speaker 3: that the doctor prescribes. I'm want of those people that
• 28:05
  Speaker 3: I will argue with my MIE in which I do
• 28:08
  Speaker 3: with my primary care provider about medications, because you're not
• 28:12
  Speaker 3: just gonna give me a medication because you say you
• 28:15
  Speaker 3: think or let's try. No, I'm not your guinea pig.
• 28:19
  Speaker 3: We're not going to let's just try and see. And
• 28:23
  Speaker 3: also they'll tell you that, okay, if you start this medication,
• 28:26
  Speaker 3: give it a little like a month or so to try. Really,
• 28:32
  Speaker 3: all you need is fourteen days for that medicine to
• 28:35
  Speaker 3: get into your system to notice whether or not it's
• 28:38
  Speaker 3: going to do something to actually help you. After those
• 28:42
  Speaker 3: fourteen days, if nothing has changed, you can stop that medication.
• 28:47
  Speaker 3: They will try to tell you that you can't stop
• 28:51
  Speaker 3: a medication that quickly. If you were not born taking
• 28:55
  Speaker 3: that medication, you can stop that medication. It is not
• 28:59
  Speaker 3: going to change anything outside of that. That is one
• 29:03
  Speaker 3: of the misleading things that doctors will tell you. If
• 29:06
  Speaker 3: I start you on this medication, you can't just stop it.
• 29:10
  Speaker 2: You can.
• 29:10
  Speaker 3: You can stop it the same way you started it.
• 29:13
  Speaker 3: Give it, yeah, give it fourteen days to get in
• 29:17
  Speaker 3: your system a good little bit, and once you have
• 29:21
  Speaker 3: realized what it's doing. If it's helping, then continue to
• 29:25
  Speaker 3: take the medication. If it's not. If it's not helping
• 29:29
  Speaker 3: and you're not seeing any results, then stop taking the medication.
• 29:33
  Speaker 3: Don't get yourself called up into where you're constantly taking
• 29:37
  Speaker 3: a medication that now you gotta get your kidney's check.
• 29:40
  Speaker 3: Now you gotta get this check. Your blood pressure is
• 29:44
  Speaker 3: prone to spike because you're on this medication. It could
• 29:47
  Speaker 3: go either way. And that's one of the things why
• 29:50
  Speaker 3: I am so adamant about not taking prescriptions anymore, is
• 29:58
  Speaker 3: if I don't see benefit, we ain't gonna argue about it.
• 30:02
  Speaker 3: I'm just not gonna take it. Me and God gonna
• 30:04
  Speaker 3: have a conversation. He's gonna give me a couple of
• 30:07
  Speaker 3: other solutions, and I'm gonna go with what he recommends
• 30:10
  Speaker 3: more so than what man recommends. And I can say
• 30:14
  Speaker 3: that God has kept me this far with being diagnosed
• 30:19
  Speaker 3: with Kari, and he is keeping me functioning. Now. Some
• 30:23
  Speaker 3: days I'm a little hard headed, I'm a little stubborn.
• 30:25
  Speaker 3: Now I'll be liking to listen to him too, but
• 30:27
  Speaker 3: he always comes back to me and sit me down
• 30:31
  Speaker 3: and be like, Okay, you didn't listen. Now you got
• 30:33
  Speaker 3: to sit over here for a couple of days because
• 30:35
  Speaker 3: she was hard headed. Sorry, I'm sorry. You know I'm
• 30:38
  Speaker 3: still learning and we got to go back and forth.
• 30:41
  Speaker 3: But you know, I'm gonna always be obedient as best
• 30:46
  Speaker 3: I can. He knows the child and he created, and
• 30:50
  Speaker 3: he knows that she can be very stubborn and wants
• 30:53
  Speaker 3: to do it her way to see what the outcome
• 30:55
  Speaker 3: gonna be. But most of the time he always right.
• 30:57
  Speaker 2: I will say that absolutely. Well, I thank you for
• 31:04
  Speaker 2: joining me tonight to talk about Kiari malformation and to
• 31:10
  Speaker 2: raise awareness for it. I'm not gonna hold you. I
• 31:14
  Speaker 2: want you to go and resk, lay down, do what
• 31:18
  Speaker 2: you need to do well.
• 31:19
  Speaker 3: I'm gonna lay down for just a little bit because
• 31:21
  Speaker 3: my grandbaby gonna be over here her mama and don't
• 31:24
  Speaker 3: want to go to the movies child, So I will
• 31:27
  Speaker 3: have a little little mama here in the little movie.
• 31:31
  Speaker 2: Tell me we're gonna take a nap. It's eight thirty three.
• 31:36
  Speaker 2: Tell her we go take a nap.
• 31:38
  Speaker 3: We gonna see how this is gonna go. She's a
• 31:40
  Speaker 3: she's a night out. She she's her mother, Yeah, she's
• 31:44
  Speaker 3: her mother child. And I quickly tell her, Lisa, grandma
• 31:47
  Speaker 3: is going to be whatever you choose to do, you
• 31:51
  Speaker 3: can do it right in this space. But outside of that,
• 31:53
  Speaker 3: we're gonna have a little problem. She'd be like okay,
• 31:56
  Speaker 3: T T. So she usually is okay, but if I
• 32:01
  Speaker 3: give her this bath tonight with the little nighttime bath, oh,
• 32:06
  Speaker 3: she would be out in thirty minutes. So I ain't
• 32:08
  Speaker 3: gonna worry about it because that little stuff put me out.
• 32:11
  Speaker 3: I use the baby nighttime bath myself and I'll be sleep.
• 32:15
  Speaker 2: Yeah. Yeah, I would like it too. We tried it
• 32:19
  Speaker 2: on Ka, but kay, she's allergic to lavender so that
• 32:24
  Speaker 2: you can't have it. I use it, and it's just.
• 32:32
  Speaker 3: Another natural thing you can get for kids to help
• 32:35
  Speaker 3: them sleep at night, and that is tart cherry juice. Okay, yeah,
• 32:41
  Speaker 3: it's tart cherry juice. Now I drink it only because
• 32:45
  Speaker 3: I like, like, this is another natural thing that I do,
• 32:49
  Speaker 3: and that is it helps with inflammation and so when
• 32:53
  Speaker 3: you're having joint pain or anything like that, So you
• 32:55
  Speaker 3: take two teaspoons in the morning and two tea spoons
• 32:58
  Speaker 3: at night and it helps. That also helps with lour
• 33:01
  Speaker 3: and the blood pressure and sugar cravings and things of
• 33:04
  Speaker 3: that nature as well. So tart cherry juice one hundred
• 33:06
  Speaker 3: percent tart cherry juice. It's very tart, but it is.
• 33:12
  Speaker 3: It's good when it's cold, and it's actually better than
• 33:16
  Speaker 3: cranberry juice. So get you some tar cherry juice.
• 33:19
  Speaker 2: Yeah, I have to try.
• 33:21
  Speaker 3: Yeah, it'll help you sleep too. It's good. But it's
• 33:25
  Speaker 3: good for kids, So don't give them a lot. Just
• 33:27
  Speaker 3: give them a little bit right before bed and then
• 33:30
  Speaker 3: they'd be good. And if she doesn't have any peanut
• 33:32
  Speaker 3: allergies or anything like that, she can take a And
• 33:35
  Speaker 3: this is good for yourself too, Like I'm these are
• 33:38
  Speaker 3: all little things that I do. If you can't sleep,
• 33:41
  Speaker 3: take a spoonful of peanut butter.
• 33:44
  Speaker 2: Yeah.
• 33:44
  Speaker 3: Help.
• 33:46
  Speaker 2: So yeah, something new every day.
• 33:50
  Speaker 3: Yeah. See, Like I said, I'm very, very weird when
• 33:53
  Speaker 3: it comes to certain things, and I've eliminated taken a
• 33:55
  Speaker 3: lot of prescription medications for that particular reason. So if
• 34:02
  Speaker 3: I can find something that is natural and that it works,
• 34:05
  Speaker 3: I'm sticking to that because at one point I was
• 34:09
  Speaker 3: on I want to say, six different medications at one time,
• 34:15
  Speaker 3: and I was only I was walking zombie and I
• 34:19
  Speaker 3: did not like that feeling. And I have not been
• 34:21
  Speaker 3: back on any of those medications now since I want
• 34:31
  Speaker 3: to say twenty twenty nineteen. Okay, so I've been heavy
• 34:39
  Speaker 3: medication prescription medications free since then. So everything I do
• 34:44
  Speaker 3: now is if it ain't natural, I ain't got I
• 34:47
  Speaker 3: don't know what is right.
• 34:50
  Speaker 2: Well, I want to take a moment and thank you
• 34:53
  Speaker 2: for coming on tonight. Tell the listeners about your podcast
• 34:59
  Speaker 2: real quick.
• 35:00
  Speaker 3: Okay. My podcast is titled Believe in the Journey and
• 35:04
  Speaker 3: it is every second Sunday and fourth Thursday of the month,
• 35:09
  Speaker 3: and I will be doing a full understanding of KRII
• 35:15
  Speaker 3: on September the fourteenth at eight pm, So make sure
• 35:20
  Speaker 3: you guys tune in because I'm gonna talk about the
• 35:22
  Speaker 3: types of KR malformation. There are four types and so
• 35:28
  Speaker 3: I want you guys to understand that, and then I'm
• 35:30
  Speaker 3: gonna give you a little bit more about me and
• 35:33
  Speaker 3: my journey with KRII. So I'll try not to keep
• 35:38
  Speaker 3: you guys too long, but k is a lot of
• 35:42
  Speaker 3: information to cover. So I may end up doing both
• 35:46
  Speaker 3: shows for the month of September on KR malformation. I
• 35:49
  Speaker 3: haven't decided just yet, but yeah, make sure you tune
• 35:53
  Speaker 3: in Sunday, September the fourteenth at eight pm to believe
• 35:58
  Speaker 3: in the journey. If you are wanting to write a book,
• 36:02
  Speaker 3: you can come and talk to me about that. We
• 36:04
  Speaker 3: can have a consultation call and we can get your
• 36:08
  Speaker 3: vision out there. That is Wings of Transformation Publishing business
• 36:13
  Speaker 3: page is on Facebook, or you can contact me directly
• 36:16
  Speaker 3: Trevida Harris. If you have in trouble, remember my name.
• 36:19
  Speaker 3: I always give you this little cheesy analogy, and that
• 36:22
  Speaker 3: is if you can remember Velvida cheese, you can say Trevida,
• 36:26
  Speaker 3: so you'll always remember my name. Anything else I got
• 36:30
  Speaker 3: going on, I don't think so outside of that, yeah, no,
• 36:37
  Speaker 3: I've got none else.
• 36:38
  Speaker 2: Okay, Well, thank you again for joining me tonight. It's
• 36:44
  Speaker 2: been a pleasure as always. I will be back on
• 36:48
  Speaker 2: the fourth Friday of this month with my co host
• 36:53
  Speaker 2: d D discussing spina biffita because well, hydro syphilis.
• 36:59
  Speaker 3: Yes, yeah, and that is blue still mm hmmm mm
• 37:08
  Speaker 3: hmm yeah, so.
• 37:11
  Speaker 2: Look out for that and I thank you all for
• 37:14
  Speaker 2: tuning in tonight. I have a good night, Yie.