Latest / DA CREW Podcast / TRIVEDA HARRIS TALKING ABOUT Chiari malformation

Transcript

TRIVEDA HARRIS TALKING ABOUT Chiari malformation · DA CREW Podcast

• 0:05
  Speaker 1: Good evening and welcome to Believe in the Journey podcast
• 0:08
  Speaker 1: where I am your host, Trevita Harris, and tonight I'm
• 0:12
  Speaker 1: going to be talking to you about understanding Kari malformation.
• 0:16
  Speaker 1: September is Kari Malformation Awareness Month, and I just wanted
• 0:21
  Speaker 1: to bring awareness to this condition, not only because it
• 0:26
  Speaker 1: is one that I deal with, but it is because
• 0:29
  Speaker 1: it is rare and not a lot of people have
• 0:31
  Speaker 1: heard of it, and it is often misdiagnosed with other conditions.
• 0:37
  Speaker 1: But before we do anything, we have to go to
• 0:39
  Speaker 1: God in prayer. Dear Heavenly Father, thank you for bringing
• 0:42
  Speaker 1: me here in front of each and every person that
• 0:45
  Speaker 1: is a listening ear tonight. Let the words of my
• 0:48
  Speaker 1: mouth fall upon the ears that need to hear, and
• 0:50
  Speaker 1: let them have a good understanding of what Kari malformation is.
• 0:55
  Speaker 1: And if they do not understand, I am always available
• 0:58
  Speaker 1: to answer the questions to the knowledge that I have.
• 1:02
  Speaker 1: I thank you for allowing me the opportunity and to
• 1:06
  Speaker 1: be a voice to those who are battling with this
• 1:09
  Speaker 1: condition that there is no cure for. But you are
• 1:13
  Speaker 1: a healer of all things, and you keep us focused
• 1:16
  Speaker 1: on what it is that we need to do. As
• 1:18
  Speaker 1: we deal with this condition that is not an easy
• 1:21
  Speaker 1: condition to deal with. But I thank you for this
• 1:24
  Speaker 1: opportunity to be in front of those who are willing
• 1:26
  Speaker 1: to listen to my journey and the information that I
• 1:29
  Speaker 1: have to share about Krii malformation and your precious and
• 1:33
  Speaker 1: holy name Jesus. I pray Amen. Well, as I said,
• 1:37
  Speaker 1: I wanted to talk to you guys about QRII malformation
• 1:40
  Speaker 1: and what Rii malformation is. It is a serious neurological
• 1:44
  Speaker 1: condition that affects the shape of the brain. And basically
• 1:49
  Speaker 1: when people say my brain is too big, that's basically
• 1:53
  Speaker 1: what they're saying is because the base of the brain
• 1:56
  Speaker 1: is coming out at the base of the spinal cord,
• 1:59
  Speaker 1: so it's basically at the brainstem. And there are four
• 2:03
  Speaker 1: types of ki malformation. Type one is the most common
• 2:09
  Speaker 1: and it is basically where the harniation of the cereial
• 2:13
  Speaker 1: tonsils fall into the spinal cord. People who have a
• 2:17
  Speaker 1: harniation of five point five milli centimeters or however you
• 2:23
  Speaker 1: say that millimeters, they may not experience any symptoms at all,
• 2:29
  Speaker 1: but there are some like myself who do experience some symptoms.
• 2:34
  Speaker 1: It can cause extreme headaches, nick pain, balance problems, difficulties, swallowing,
• 2:40
  Speaker 1: vision disturbances, balance issues, and the list goes on. Type
• 2:44
  Speaker 1: two is associated with spinal biffita. It's a birth defect
• 2:49
  Speaker 1: that is an opening at the spinal cord that did
• 2:53
  Speaker 1: not close during the gestational period. It's also the harniation
• 2:59
  Speaker 1: of the cerebral brain stem the fourth ventricle into the
• 3:04
  Speaker 1: spinal cord, and it can cause serious neurological problems such
• 3:08
  Speaker 1: as paralysis, breathing difficulties, hydrocephalus, which is basically like fluid
• 3:15
  Speaker 1: on the brains. Type three is the rear and it
• 3:19
  Speaker 1: is a severe It is the harniation of the cerebellum
• 3:23
  Speaker 1: and the brain stem, where there is an opening at
• 3:26
  Speaker 1: the base of the brain where it allows the brain
• 3:29
  Speaker 1: to come down and sit on the top of the
• 3:32
  Speaker 1: spinal cord. This can be life that threatening and cause
• 3:37
  Speaker 1: complications such as seizures and brain damage. That is type three.
• 3:45
  Speaker 1: Type four is the least common, but it is also
• 3:48
  Speaker 1: the most severe. It is the undeveloped or the absence
• 3:52
  Speaker 1: of the cerebellum and often fatal in the early infancy stages.
• 3:58
  Speaker 1: So usually if a person our baby is born kind
• 4:05
  Speaker 1: of they may make it through the delivery stage, but
• 4:12
  Speaker 1: not usually. So those are the different types of QR malformation.
• 4:18
  Speaker 1: The harniation that a person may have does not signify
• 4:22
  Speaker 1: whether or not they're going to be symptomatic or not.
• 4:26
  Speaker 1: It just is a condition that affects each and every
• 4:29
  Speaker 1: person differently, and you never know what you're gonna deal
• 4:35
  Speaker 1: with when you are dealing with KI malformation. Like I
• 4:38
  Speaker 1: said before, KI does not have a cure. There is
• 4:42
  Speaker 1: no cure for KR malformation. There is a decompression brain
• 4:48
  Speaker 1: surgery that is offered to patients who deal with KI,
• 4:54
  Speaker 1: and basically what that does is it helps to slow
• 4:57
  Speaker 1: down the progression of the condition and and it doesn't
• 5:02
  Speaker 1: It can sometimes alleviate some of the symptoms that a
• 5:05
  Speaker 1: person may be experiencing, but it is better for a
• 5:09
  Speaker 1: patient who is under the age of twenty five to
• 5:13
  Speaker 1: have a better outcome due to some of the research
• 5:16
  Speaker 1: that I've done is that if you are over the
• 5:19
  Speaker 1: age of twenty five, the complications may be a little
• 5:22
  Speaker 1: bit more in depth for you. So you always want
• 5:27
  Speaker 1: to make sure that you get more than one opinion
• 5:32
  Speaker 1: and outweigh the options and what the outcome may be.
• 5:36
  Speaker 1: Because some people who have had that surgery that I
• 5:40
  Speaker 1: know personally have not been able to do the things
• 5:46
  Speaker 1: that they once were able to do before they had
• 5:48
  Speaker 1: the surgery, and it is a long recovery period for
• 5:52
  Speaker 1: some people. After having that surgery, you do run the
• 5:56
  Speaker 1: risk of losing your vision, having other complications like developing
• 6:03
  Speaker 1: Parkinson's disease and things of that nature. So whenever you
• 6:07
  Speaker 1: are considering bearing brain surgery and any capacity, understand that
• 6:14
  Speaker 1: the risks are are there, so never take it lightly.
• 6:19
  Speaker 1: Some of the symptoms some of the other symptoms that
• 6:21
  Speaker 1: you can have with KRII my information is nosebleeds, slurred speech,
• 6:26
  Speaker 1: occasional swelling, hyper and hypotension, a horse voice, abdominal pain,
• 6:32
  Speaker 1: shortness of breath, facial numbness, paputations, tachycardia, blackouts, ear pain,
• 6:39
  Speaker 1: brain FuG phototopia, tingling in the limbs. It's a lot
• 6:45
  Speaker 1: of different symptoms, and I will be honest with you guys,
• 6:48
  Speaker 1: some of these symptoms that I have experienced and now
• 6:53
  Speaker 1: that I'm going through minimfaus, they are in the same list.
• 6:58
  Speaker 1: So I can't necessarily tell what is a kar symptom
• 7:04
  Speaker 1: or what is the symptom of menopause. So's it's very,
• 7:09
  Speaker 1: very crazy when you are already dealing with these symptoms.
• 7:13
  Speaker 1: The reason I wanted to talk about ki my information
• 7:16
  Speaker 1: not only is it because I deal with this, but
• 7:19
  Speaker 1: it is a rare condition and most people don't get diagnosed.
• 7:26
  Speaker 1: For years, I was misdiagnosed from a child to I
• 7:31
  Speaker 1: was thirty, and I ended up having a stroke, which
• 7:35
  Speaker 1: led to my actual correct diagnosis. Because I suffered as
• 7:40
  Speaker 1: a little girl with nose bleeds all the time. It
• 7:43
  Speaker 1: was issues because they would think that I was getting
• 7:46
  Speaker 1: overheated because I did have issues with regulating my body temperature,
• 7:51
  Speaker 1: which would sometimes lead to nose bleeds. It would be
• 7:57
  Speaker 1: ringing in the ears, the nos and tingling in my
• 8:01
  Speaker 1: hands and feet, and that didn't start. The numbness and
• 8:04
  Speaker 1: tingling did not start until I was about nineteen years old,
• 8:08
  Speaker 1: and so no one had any idea of what was
• 8:12
  Speaker 1: causing it. They were just saying that the headaches that
• 8:15
  Speaker 1: I was having the nose bleeds were just migrains and
• 8:19
  Speaker 1: I was just too hot and was just having the
• 8:21
  Speaker 1: nose bleeds and the heart paputations. I was having those
• 8:29
  Speaker 1: a lot. I was at a doctor's appointment my yearly checkup,
• 8:34
  Speaker 1: and the doctor you know, when they go to listen
• 8:38
  Speaker 1: to your heart, you know, you gotta breathe and do
• 8:40
  Speaker 1: all that stuff. And so I was doing that and
• 8:43
  Speaker 1: the doctor stopped and she was like, are you okay, Yes, ma'am,
• 8:46
  Speaker 1: I'm fine. Are you okay? She's like, yeah, but are
• 8:50
  Speaker 1: you okay? I said, yes, ma'am, I'm fine. What's wrong?
• 8:54
  Speaker 1: She was like, your heart rate just sped up? Are
• 8:57
  Speaker 1: you sure you're okay? I said, yes, ma'am, I'm fine.
• 9:00
  Speaker 1: And this happens all the time, I said, it happens
• 9:03
  Speaker 1: sometimes when I'm laying in the bed and I'm not
• 9:06
  Speaker 1: doing anything. I'm not stressed, not worried about anything. But
• 9:09
  Speaker 1: this has been happening since I was a little girl.
• 9:11
  Speaker 1: So I'm not sure why you're so afraid right now.
• 9:18
  Speaker 1: But this is normal for me. But no one ever
• 9:21
  Speaker 1: put two and two together until after having my stroke.
• 9:27
  Speaker 1: The reason that KRII information awareness is so important is
• 9:32
  Speaker 1: because people are oftentimes misdiagnosed, and being misdiagnosed means that
• 9:38
  Speaker 1: you hinder being able to get the necessary treatments and
• 9:44
  Speaker 1: medications that may help to alleviate some of the symptoms
• 9:47
  Speaker 1: that you may be dealing with. It affects your jobs,
• 9:52
  Speaker 1: it affects your relationship. It also plays a major role
• 9:56
  Speaker 1: on your mental health. And a lot of people don't
• 10:01
  Speaker 1: necessarily think about that or talk about that in the
• 10:03
  Speaker 1: sense of Kyr, but it does affect your mental health
• 10:08
  Speaker 1: because you're not the same person anymore. You went from
• 10:11
  Speaker 1: being able to drive, to being able to cook, to
• 10:14
  Speaker 1: being able to stand, to do all of those things,
• 10:17
  Speaker 1: and then now you are falling. You are having these excruciating,
• 10:24
  Speaker 1: debilitating headaches and things of that nature, hamings patries. You're
• 10:30
  Speaker 1: dealing with so much at once that you don't even
• 10:33
  Speaker 1: know what to make of it. You're having the balance issues,
• 10:39
  Speaker 1: you're having issues with your vision, you're having difficulties swallowing,
• 10:43
  Speaker 1: You're having all of these different things that are happening.
• 10:47
  Speaker 1: You never know how you're going to deal with the
• 10:52
  Speaker 1: symptom as they come, because you could go with just
• 10:56
  Speaker 1: having the horrible headaches, and then the next day you're
• 11:00
  Speaker 1: dealing with another symptom like shortness of breath, or you're
• 11:05
  Speaker 1: having another symptom, which is the numbness in tinkling in
• 11:08
  Speaker 1: your hands. One of the medications that they usually prescribe
• 11:12
  Speaker 1: is that anti seizure medication named Topomax, and with that medication,
• 11:17
  Speaker 1: one of the side effects for that is numbness and
• 11:20
  Speaker 1: tinkling in the hands. Well, if you're already experiencing that,
• 11:23
  Speaker 1: you're not going to know how to explain it, if
• 11:29
  Speaker 1: you're not going to recognize it as being a new
• 11:32
  Speaker 1: symptom for taking the medication, or if it's just one
• 11:36
  Speaker 1: of the symptoms that you're already dealing with. And that
• 11:39
  Speaker 1: was one of my issues with taking that medication is
• 11:42
  Speaker 1: that I had the numbness and tingling in my hands,
• 11:46
  Speaker 1: but I was already having it, but it did intensify
• 11:48
  Speaker 1: it to where I had to, you know, eventually get
• 11:52
  Speaker 1: off of that medication. The other thing is you learn
• 11:57
  Speaker 1: to pay more attention to your body and the signals
• 12:00
  Speaker 1: that it gives you. Also, the weather plays a major
• 12:04
  Speaker 1: part in how you're going to deal with these symptoms
• 12:07
  Speaker 1: as they come. You don't always think about that, but
• 12:11
  Speaker 1: it does play a major part. So if it's about
• 12:14
  Speaker 1: to rain, you're gonna feel that. You know, the old
• 12:15
  Speaker 1: folks say that if you have knee pain, joint pain,
• 12:20
  Speaker 1: or anything like that, you can tell when the rain
• 12:23
  Speaker 1: is coming. The other thing is with dealing with kiari
• 12:28
  Speaker 1: you get a lot of pressure built up in the
• 12:31
  Speaker 1: head when the temperature is changing. For me, when it's
• 12:35
  Speaker 1: really really cold or it's really really hot, it affects
• 12:38
  Speaker 1: me in that way, and I can always tell when
• 12:41
  Speaker 1: a storm is coming because I'm usually stuck in the
• 12:45
  Speaker 1: bed and this week I have literally with the weather
• 12:50
  Speaker 1: changing and it being cooler in the mornings. In the mornings,
• 12:53
  Speaker 1: it is hard for me because my head is hurting,
• 12:59
  Speaker 1: so I'm usually with the heating pad or an ice
• 13:03
  Speaker 1: pack on the back of my head. The headaches that
• 13:06
  Speaker 1: I have are usually very difficult to deal with because
• 13:13
  Speaker 1: it's not just a headache. It's a burning sensation at
• 13:17
  Speaker 1: the back of my head down my neck to my shoulders,
• 13:21
  Speaker 1: and it hurts. It's very painful. I do not wish
• 13:25
  Speaker 1: this on my worst enemy. It is not one of
• 13:28
  Speaker 1: those conditions that you would want someone else to have
• 13:32
  Speaker 1: to deal with. Excuse me. Being able to share the
• 13:40
  Speaker 1: awareness and the information that I have with this condition
• 13:43
  Speaker 1: is one that I want people to know that it's
• 13:47
  Speaker 1: an invisible condition. Yes I look like I am fine,
• 13:51
  Speaker 1: like there's no issues, that I don't have any problems
• 13:54
  Speaker 1: or anything like that, but I deal with this condition
• 13:57
  Speaker 1: and I've been able to make it look like I'm okay,
• 14:02
  Speaker 1: even though most days I am in pain because I
• 14:05
  Speaker 1: have a headache. I don't know what it feels like
• 14:07
  Speaker 1: to not have a headache, and I feel like the
• 14:10
  Speaker 1: day that my head does not hurt, then there's something
• 14:14
  Speaker 1: seriously wrong because I do not know what that feels like.
• 14:18
  Speaker 1: I do not know what a pain free head feels like,
• 14:24
  Speaker 1: if that makes any sense. So those of you who
• 14:27
  Speaker 1: have never had a headache, thank God for that, because
• 14:31
  Speaker 1: it is not fun at all. And I do deal
• 14:36
  Speaker 1: with my grains. And there is a difference for me
• 14:39
  Speaker 1: with knowing the difference between the two, because a migrain
• 14:43
  Speaker 1: is usually gonna be just on one side and it's
• 14:46
  Speaker 1: over one eye. It could be in the center where
• 14:50
  Speaker 1: it affects my vision, but kari also affects a vision,
• 14:55
  Speaker 1: So if it's on just one side of my head,
• 14:58
  Speaker 1: I know that it's just a migraine. If it's both,
• 15:03
  Speaker 1: and there are days where I do deal with having
• 15:06
  Speaker 1: both a k headache and a migraine, and those are
• 15:11
  Speaker 1: the days where my eyes, my eyes hurt, my eyelashes hurt,
• 15:16
  Speaker 1: my hair hurts, my head it hurts to move it
• 15:19
  Speaker 1: hurts to breathe, It hurts to do anything. Any movement hurts,
• 15:25
  Speaker 1: and just trying to lay as still as possible is
• 15:30
  Speaker 1: not always easy to do. But that's what I have
• 15:34
  Speaker 1: to do to try to, you know, not cause myself
• 15:39
  Speaker 1: any pain. Now, I love to laugh. I love to
• 15:42
  Speaker 1: be silly, but coughing and sneezing and laughing creates a
• 15:45
  Speaker 1: lot of pressure and pain in the back of my head.
• 15:49
  Speaker 1: But I love to laugh, So I will not give
• 15:52
  Speaker 1: Kari the satisfaction of taking away my joy to laugh
• 15:56
  Speaker 1: and to enjoy life as God has allowed me to do. So.
• 16:03
  Speaker 1: As I said before, Ki malformation has no cure, there
• 16:08
  Speaker 1: are some medications that you can take to help alleviate
• 16:12
  Speaker 1: some of the symptoms that you may be having. The
• 16:17
  Speaker 1: abdominal pain, the knowledge of the apputations, the tachycardia, which
• 16:25
  Speaker 1: is basically a fast heartbeat, and that can be life
• 16:28
  Speaker 1: threatening if it's not checked. But if you're dealing with
• 16:32
  Speaker 1: Kri malformation, it's going to be a difficult road to
• 16:37
  Speaker 1: figure out what medications can help manage that. So being
• 16:43
  Speaker 1: a advocate for yourself is very, very important when you
• 16:47
  Speaker 1: finally get a correct diagnosis, So make sure that you're
• 16:51
  Speaker 1: advocating for yourself when your body does not feel right
• 16:54
  Speaker 1: and something does not feel right, so you make sure
• 16:57
  Speaker 1: that you are advocating for yourself and don't just take
• 17:00
  Speaker 1: any medications that the doctor prescribes in the hopes of
• 17:03
  Speaker 1: saying that this is going to be a cure all
• 17:06
  Speaker 1: because number one, I have met a few brain surgeons
• 17:10
  Speaker 1: neurosurgeons who have just been adamant on saying that they
• 17:14
  Speaker 1: are the best at what they do, and I'm not
• 17:16
  Speaker 1: saying that they are not. However, you can't in the
• 17:21
  Speaker 1: same breath say to me that KRII is not the
• 17:25
  Speaker 1: cause of the symptoms that I'm dealing with, but at
• 17:28
  Speaker 1: the same time tell me that kari is the cause.
• 17:33
  Speaker 1: So it's like either it is or it isn't. Yes,
• 17:37
  Speaker 1: I have KORI, but it is not the cause of
• 17:39
  Speaker 1: these other symptoms. When we all know that the brain
• 17:43
  Speaker 1: is the central avenue for what your body is able
• 17:47
  Speaker 1: to do, because the brain has to sit the signals
• 17:50
  Speaker 1: to the body so that you're able to do what
• 17:53
  Speaker 1: is necessary to make your body move, and so not
• 17:59
  Speaker 1: just allowing them to say, hey, yeah, I'm the best
• 18:02
  Speaker 1: and I'm gonna, you know, operate on your brain and
• 18:05
  Speaker 1: take a piece of it out so that your brain
• 18:08
  Speaker 1: will have more space. Take a piece of the skull
• 18:10
  Speaker 1: so that your brain will have more space to have
• 18:16
  Speaker 1: this CSF fluid flow, so that there aren't any backups
• 18:21
  Speaker 1: or anything like that. A lot of crazy symptoms. It
• 18:25
  Speaker 1: is a little trick that I've learned over the years.
• 18:29
  Speaker 1: And it may be a little gross, but sometimes I
• 18:33
  Speaker 1: have not necessarily random nose bleaves. That's a different story.
• 18:36
  Speaker 1: But if I am holding my head down, this not
• 18:40
  Speaker 1: allergy season, is not cold and flu season, any of that.
• 18:44
  Speaker 1: But if my nose just starts to run, that is
• 18:46
  Speaker 1: an indication of spinal fluid. And so taking a brown
• 18:52
  Speaker 1: paper bag and if it dries clear, I'm okay. If
• 18:57
  Speaker 1: there's anything other than that it's a different color, then
• 19:01
  Speaker 1: there's an infection somewhere and I need to get to
• 19:03
  Speaker 1: the doctor. So learning how to cope with KR has
• 19:07
  Speaker 1: not been an easy thing for me. However, it has
• 19:12
  Speaker 1: been a journey, and to say the least, because when
• 19:15
  Speaker 1: I first found out I had Krii maulformation, it was
• 19:19
  Speaker 1: life changing number one, because I had a stroke. Having
• 19:23
  Speaker 1: the stroke is what led to me finding out that
• 19:26
  Speaker 1: I had Krii maunlformation. So I say that my stroke
• 19:29
  Speaker 1: was a gift and a curse at the same time,
• 19:33
  Speaker 1: because I was able to find out why I was
• 19:36
  Speaker 1: having these debilitating headaches, why I was having the numbness
• 19:41
  Speaker 1: and the tingling, why I was dealing with the palputations,
• 19:44
  Speaker 1: why I was dealing with so many of these things
• 19:47
  Speaker 1: that no one could ever put two and two together
• 19:50
  Speaker 1: to give a true diagnosis until I had the stroke.
• 19:56
  Speaker 1: It is not easy at all dealing with an invisible
• 20:03
  Speaker 1: illness because people will always say, well, you don't look sick.
• 20:08
  Speaker 1: I try to be polite when people say that is no,
• 20:12
  Speaker 1: I don't look sick, but they don't look stupid or
• 20:15
  Speaker 1: crazy either. But it is what it is. People are
• 20:19
  Speaker 1: going to say things that don't make any sense at all,
• 20:24
  Speaker 1: But no, I don't look like what I've been through,
• 20:27
  Speaker 1: and that's by God's grace and his mercy, he has
• 20:29
  Speaker 1: kept me covered each and every time I've had to
• 20:32
  Speaker 1: deal with this condition. I'm going to give you a
• 20:35
  Speaker 1: little backstory about how this diagnosis, even though you heard
• 20:40
  Speaker 1: me mention it a few moments ago, is that I
• 20:42
  Speaker 1: had a stroke. However, the stroke I was hard headed
• 20:47
  Speaker 1: in the sense I did not believe that I was
• 20:50
  Speaker 1: having a stroke, and so I drove myself to the hospital.
• 20:54
  Speaker 1: Once getting there, of course, the doctors were fussing about
• 21:00
  Speaker 1: me actually driving myself there. By the time I got there,
• 21:03
  Speaker 1: I could not feel my whole entire left side. I
• 21:06
  Speaker 1: never had any issues with my speech or anything of
• 21:09
  Speaker 1: that nature, and it was a hard thing to deal
• 21:14
  Speaker 1: with as far as being told that I had a stroke.
• 21:20
  Speaker 1: I have three small children at the time, they were thirteen, eleven,
• 21:24
  Speaker 1: and seven, and so having three kids to take care
• 21:31
  Speaker 1: of it was a difficult thing. But I prayed and
• 21:36
  Speaker 1: asked God to keep me covered because I have opted
• 21:40
  Speaker 1: not to do the decompression of brain surgery simply because
• 21:45
  Speaker 1: I don't feel that it is right for me at
• 21:49
  Speaker 1: this time. As long as God is keeping me covered,
• 21:54
  Speaker 1: I am going to continue to rock with his diagnosis
• 21:58
  Speaker 1: and his instructions for me. In twenty thirteen, I had
• 22:04
  Speaker 1: a major flare up with Kari and I ended up
• 22:08
  Speaker 1: losing my ability to speak and I lost the use
• 22:14
  Speaker 1: of my left side again, so it was difficult. And
• 22:19
  Speaker 1: then during that time I was diagnosed with a condition
• 22:22
  Speaker 1: called eppalasia partialist continuum, and basically it's a condition that
• 22:27
  Speaker 1: is localized seizures to one part of the body, and
• 22:31
  Speaker 1: it could usually last for a couple of days, a
• 22:35
  Speaker 1: couple of months, and even years, and for me it
• 22:37
  Speaker 1: has been years. I have learned different ways to cope
• 22:41
  Speaker 1: with not only Kari, but with Appalachia Partialist Continuum. I've
• 22:48
  Speaker 1: learned different ways and how to pay attention to my
• 22:52
  Speaker 1: body when it's given me signals to rest. Now, I
• 22:55
  Speaker 1: will be honest, there are days where I'm still extremely
• 22:59
  Speaker 1: stubborn and I don't want to sick and I don't
• 23:01
  Speaker 1: want to be confined to the bed. So I'm still
• 23:06
  Speaker 1: hard headed and struggle with that. But I am learning
• 23:09
  Speaker 1: and I'm getting a whole lot better. As a matter
• 23:12
  Speaker 1: of fact, this morning, I was still in my bed
• 23:16
  Speaker 1: at nine o'clock and my son, my youngest Nathan, was like, well,
• 23:24
  Speaker 1: it's good to see that you are actually in the
• 23:27
  Speaker 1: bed and you are resting. You're not up doing anything
• 23:30
  Speaker 1: that I don't think you should be doing. But of course,
• 23:34
  Speaker 1: my children have been my biggest support system through this
• 23:38
  Speaker 1: whole entire journey, and having a good support system whenever
• 23:42
  Speaker 1: you're dealing with anything that is health related does help
• 23:46
  Speaker 1: with the outcome of whether or not it's going to
• 23:49
  Speaker 1: be a good journey or a bad journey. So make
• 23:52
  Speaker 1: sure that you have a good support system around you
• 23:58
  Speaker 1: because KIARI is life changing. It is life altering having
• 24:04
  Speaker 1: the decompression surgery, and if you don't have someone that's
• 24:07
  Speaker 1: there to help you maneuver through your recovery stage, you
• 24:11
  Speaker 1: could have some laps, or you could, you know, just
• 24:16
  Speaker 1: not do too well with the surgery overall. But understand
• 24:19
  Speaker 1: that when you do take that risk to go under
• 24:22
  Speaker 1: the knife, that you may not be that same version
• 24:24
  Speaker 1: of yourself before you had the surgery. But after being
• 24:30
  Speaker 1: diagnosed with tr you're never what normal is considered anymore,
• 24:36
  Speaker 1: because I don't necessarily know what normal is for anyone
• 24:44
  Speaker 1: outside of myself, because this is a new normal, and
• 24:47
  Speaker 1: every day is a different symptom that I'm going to
• 24:51
  Speaker 1: have to encounter, because I never know from day to
• 24:54
  Speaker 1: day what I'm going to have to deal with and
• 24:57
  Speaker 1: what I'm going to have to face when dealing with
• 25:00
  Speaker 1: with KYR because it could be tomorrow I have a
• 25:05
  Speaker 1: speech issue, or I could have some abdominal pain, or
• 25:11
  Speaker 1: I could be dealing with Dizzey spells or just whatever,
• 25:16
  Speaker 1: and they are random they come, and they go, and
• 25:19
  Speaker 1: they do whatever they want to, and each and every
• 25:22
  Speaker 1: patient is going to deal with something different when dealing
• 25:26
  Speaker 1: with KR and my information, so there is never one
• 25:30
  Speaker 1: patient that is the same as the next one. You
• 25:35
  Speaker 1: can know five different people who have KEYR, and out
• 25:40
  Speaker 1: of those five, they each are going to tell you
• 25:43
  Speaker 1: something different. Some may not even have a headache, Some
• 25:47
  Speaker 1: may not have ever experienced balance issues or issues with
• 25:52
  Speaker 1: vowels or anything of that nature. Never dealt with any
• 25:56
  Speaker 1: numbness or tingling. But yet they have dealt with the
• 25:59
  Speaker 1: heart path you take. They've dealt with the shortness of breath,
• 26:02
  Speaker 1: They've dealt with the vision disturbances, They've dealt with the
• 26:05
  Speaker 1: ringing in the ears. So you just never know what
• 26:08
  Speaker 1: symptom you're gonna get. And that's just like the forest
• 26:11
  Speaker 1: gumps in life is like a box of chocolates. Well,
• 26:14
  Speaker 1: KR malformation is too. If you want to support someone
• 26:21
  Speaker 1: who is dealing with Kori malformation, there are several support groups.
• 26:26
  Speaker 1: Conquer Kari is one of my favorites, and Kris Support
• 26:31
  Speaker 1: dot org is another one that I like, And of
• 26:36
  Speaker 1: course there's many Facebook groups, TikTok, Instagram. So if you
• 26:43
  Speaker 1: have any additional questions. If there's something that I did
• 26:46
  Speaker 1: not cover that you don't understand about kri my malformation, please
• 26:50
  Speaker 1: you know, reach out and if I can help, and
• 26:53
  Speaker 1: if I don't have the answers, and if I know
• 26:56
  Speaker 1: someone that I can direct you to, I definitely will
• 26:59
  Speaker 1: do that. I'm going to share a video that I
• 27:02
  Speaker 1: made about KR malformation on my personal page and also
• 27:08
  Speaker 1: in my podcast group. Lord, I just went completely blank.
• 27:19
  Speaker 1: It's about eight minutes long. So whatever I did not
• 27:22
  Speaker 1: cover here, just go and watch that video. But I
• 27:26
  Speaker 1: thank you guys for tuning in tonight. My voice is
• 27:29
  Speaker 1: starting to go, so I'm going to get off of here,
• 27:32
  Speaker 1: but I thank you for tuning in and taking the
• 27:34
  Speaker 1: opportunity to learn a little bit more about KR malformation.
• 27:38
  Speaker 1: The color for Kori is purple, which is why I'm
• 27:41
  Speaker 1: wearing purple tonight. But love on somebody that has keeping
• 27:49
  Speaker 1: and as I remember to stay out of God's business,
• 27:52
  Speaker 1: the only thing that he needs you to do is
• 27:54
  Speaker 1: be obedient to what He's called you to do. Until
• 27:57
  Speaker 1: next time. I see you guys later. Good Night.