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BELIEVE IN THE JOURNEY WITH TRIVEDA HARRIS · DA CREW Podcast

0:08
Speaker 1: And as you know, this month is k Information Awareness Month,
0:19
Speaker 1: and I wanted to share with you my personal journey
0:23
Speaker 1: of what malformation has been like for me since my
0:27
Speaker 1: diagnosis actual correct diagnosis sixteen years ago, and what led
0:33
Speaker 1: up to getting the proper diagnosis. But before we do anything,
0:37
Speaker 1: we have to go to God in prayer. Dear having me, Father,
0:40
Speaker 1: thank you for bringing me together. Me and all my
0:42
Speaker 1: guests who are tuning in. We are sorry for the
0:45
Speaker 1: delay tonight, but you know, there's always something that's going
0:50
Speaker 1: to happen whenever you're trying to spread the word or
0:52
Speaker 1: bring awareness to anything. But we thank you for your guidance,
0:55
Speaker 1: for your patience, for your understanding for each and everything
0:58
Speaker 1: that we do. Help the words of my mouth all
1:02
Speaker 1: upon the ears that need to hear, and help me
1:05
Speaker 1: to bring awareness to this rare condition that there is
1:08
Speaker 1: no cure for. It is a condition that is invisible
1:12
Speaker 1: to the eye, but the patient to deal with it
1:15
Speaker 1: like myself, we are walking testimonies and blessings of what
1:19
Speaker 1: you can do when we trust in your healing and
1:22
Speaker 1: your purchase and Holy name Jesus, we pray Amen. And
1:26
Speaker 1: as I was saying, this month is Kori Malformation Awareness Month,
1:31
Speaker 1: and the last show that I did, I talked to
1:34
Speaker 1: you about what Kuri malformation is, and tonight I wanted
1:39
Speaker 1: to talk to you about my journey and what it
1:42
Speaker 1: has been like for me being diagnosed with this condition.
1:46
Speaker 1: And I'll be honest. When I first found out I
1:50
Speaker 1: had this condition, I had never heard of it before,
1:54
Speaker 1: and it was an incidental finding. And what I mean
2:00
Speaker 1: by that is and y'all, I'm sorry. I got the hiccups.
2:03
Speaker 2: I'm not growing.
2:04
Speaker 1: I'm still going forever before eight, but I probably spread
2:07
Speaker 1: in areas that I shouldn't.
2:09
Speaker 2: But anyway, I had a.
2:13
Speaker 1: Stroke in two thousand and nine, and that was August
2:17
Speaker 1: the twenty second of two thousand and nine. That's what
2:20
Speaker 1: led me to finding out that I had KRII my information,
2:25
Speaker 1: but I still wasn't quite sure. A month after having
2:28
Speaker 1: my stroke, I was back in the hospital literally on.
2:34
Speaker 2: September the twenty.
2:39
Speaker 1: The September twenty second of two thousand and nine, and
2:44
Speaker 1: being in there just literally less than thirty days.
2:47
Speaker 2: After having a stroke. I was back in the hospital.
2:49
Speaker 1: And the doctors and nurses, they really didn't have an
2:54
Speaker 1: idea of why I was back because I wasn't presenting
2:58
Speaker 1: a stroke like symptoms at that time. I didn't have
3:01
Speaker 1: any other things that would indicate that I was having
3:06
Speaker 1: another stroke, so they really did not know, but they
3:09
Speaker 1: knew something was wrong. And I was admitted again to
3:12
Speaker 1: the hospital for another four days, and I had one
3:16
Speaker 1: of the nurses who came in and she was telling
3:18
Speaker 1: me that she had just had one of her friends
3:22
Speaker 1: and I inserted into the hospital admitted into the hospital
3:27
Speaker 1: for something similar that I was having, and she told
3:31
Speaker 1: me what it was. So I asked one of them
3:34
Speaker 1: if they could, one of the nurses if they could
3:36
Speaker 1: take me down to the records department so that I
3:39
Speaker 1: could get my medical records from my previous visit. And
3:44
Speaker 1: I wasn't going to be able to get the other
3:46
Speaker 1: records until I was actually discharged from the hospital so
3:50
Speaker 1: that I could compare all of the notes. And so
3:56
Speaker 1: she told me about the condition. KIRII my information and
3:58
Speaker 1: so all I had was my phone. So I started
4:01
Speaker 1: doing some research about the symptoms that I was experiencing.
4:04
Speaker 1: And these were symptoms that I had been having as
4:06
Speaker 1: a little girl growing up, which was the nose bleeds,
4:10
Speaker 1: the paputations, the numbness, and tingling in my hands and feet,
4:15
Speaker 1: So this was always something that I had been dealing
4:18
Speaker 1: with but never been properly diagnosed. The headaches that would
4:22
Speaker 1: last for days, the shortness of breath, the ringing in
4:25
Speaker 1: the ears, all of these things not all at one time,
4:28
Speaker 1: but over time. These were symptoms that would start. The
4:32
Speaker 1: numbness in the tingling in the hands that started around
4:36
Speaker 1: age nineteen. The nose bleeds had always been from age
4:40
Speaker 1: five till still I still deal with the random nose
4:45
Speaker 1: bleeds and have no indication that that's going to happen.
4:51
Speaker 1: It's not because I've gotten high or overheated or anything
4:54
Speaker 1: like that. But I do deal with temperature where I
5:00
Speaker 1: can't really regulate my body temperature. So being admitted into
5:06
Speaker 1: the hospital that second time in two thousand and nine,
5:09
Speaker 1: it was frustrating, but.
5:15
Speaker 2: It was something that was necessary.
5:16
Speaker 1: So needless to say, I ended up getting my medical
5:19
Speaker 1: record in that I found the information about Kori, my information,
5:24
Speaker 1: and it was there. It was there in the original
5:28
Speaker 1: visit from when I had the stroke, but it wasn't
5:31
Speaker 1: mentioned to me when I was being released from the hospital.
5:35
Speaker 1: They only said that I had a stroke. I had
5:37
Speaker 1: a two millimeter brain aneurysm and that they were more
5:41
Speaker 1: concerned with those things than anything else, and they didn't
5:45
Speaker 1: feel that the Kari was significant. So after doing more research,
5:53
Speaker 1: not being able to use my left side, not being
5:55
Speaker 1: able to walk, and not being able to hold a
5:59
Speaker 1: loaf of bread, shoe button shirts in my pants, just
6:02
Speaker 1: the normal things that do coincide with having a stroke,
6:08
Speaker 1: that was something that was very, very frustrating to me.
6:11
Speaker 1: But having to raise three small children, I had to
6:15
Speaker 1: do my research. So after getting all of my paperwork,
6:19
Speaker 1: I started doing the research. Finding out that one in
6:24
Speaker 1: every one thousand person is diagnosed with kri malformation. You
6:31
Speaker 1: would have to deal with a true Kris specialist. There
6:34
Speaker 1: are newer surgeons, but there is a difference in the
6:38
Speaker 1: specialty of what they deal with. So having a surgery
6:43
Speaker 1: by a newer surgeon who does not specialize in Krii
6:47
Speaker 1: malformation is not a good idea, but it's not something
6:54
Speaker 1: that I have considered doing. So fast forward to twenty thirteen.
6:58
Speaker 1: I had a major flare with my condition. I went
7:02
Speaker 1: to bed on a Wednesday night. The next morning I
7:06
Speaker 1: woke up and the whole entire left side from my
7:10
Speaker 1: face all the way down to my foot I could
7:13
Speaker 1: not feel, but at the same time it was just
7:18
Speaker 1: it was twitching, so I couldn't describe it in no
7:21
Speaker 1: other way. I had a horrible headache, which I was
7:25
Speaker 1: used to having a headache because that's one of the
7:26
Speaker 1: major symptoms of KARI. My information and went to the doctor.
7:32
Speaker 1: They just treated me for my grains and sent me home.
7:37
Speaker 1: Well over the course of a week, I ended up
7:41
Speaker 1: losing my ability to speak, and it was frustrating because
7:47
Speaker 1: as you can see, I talk very well. I do
7:50
Speaker 1: have some issues every once in a while where I lose.
7:55
Speaker 2: My training throat or.
7:57
Speaker 1: Words get twisted or whatever, but this is something that
8:00
Speaker 1: I've had to learn to deal with with having this condition.
8:03
Speaker 1: So that was frustrating, to say the least, because I
8:07
Speaker 1: went to bed and I woke up different. And not
8:12
Speaker 1: only that, it was hard to communicate to the doctors
8:17
Speaker 1: what I was experiencing, and they were more concerned with
8:21
Speaker 1: the aneurism rupturing or it causing some problems, and It's like,
8:26
Speaker 1: that's not what I'm worried about. I'm worried about everything else.
8:32
Speaker 1: Because I was fine a couple of days ago, and
8:35
Speaker 1: I have a video that I posted my group in
8:39
Speaker 1: the Believe in the Journey group about what happened, because
8:44
Speaker 1: about three days before I had that issue, I had
8:48
Speaker 1: done a photo shoot and nothing seemed out of the ordinary,
8:53
Speaker 1: nothing seen as if this was going to be a
8:56
Speaker 1: flare up or anything like that. But needless to say,
8:59
Speaker 1: that took me out of work. I could not work.
9:04
Speaker 1: I was working at an optical place, so I was
9:07
Speaker 1: an optician while I was actually a contact lens manager,
9:11
Speaker 1: and I could not perform my job anymore because trying
9:17
Speaker 1: to measure somebody for their glasses and your hands are shaken.
9:20
Speaker 1: You don't want to mess up a progressive on a
9:24
Speaker 1: person who is going to be using those glasses.
9:27
Speaker 2: It's just not a good look.
9:28
Speaker 1: And so I was unable to do my job, and
9:32
Speaker 1: that took me out of work for about two years.
9:36
Speaker 1: And honestly, I've never truly been cleared to go back
9:40
Speaker 1: to work. But when you have three kids that you
9:43
Speaker 1: have to take care of and you're a single parent,
9:47
Speaker 1: you gotta do what you gotta do. And I refuse
9:50
Speaker 1: to sit around and wait for disability, even though I
9:54
Speaker 1: had the medical evidence, the two neurologists had signed off
10:01
Speaker 1: on me to be able to, you know, be approved
10:08
Speaker 1: of my disability. But you know, when you have people
10:12
Speaker 1: who don't really understand what this condition is, and just
10:15
Speaker 1: because I look fine and I was in my thirties
10:19
Speaker 1: when I was trying to get disability to them, I
10:24
Speaker 1: could find a job that will allow me to sit
10:28
Speaker 1: and miss seventy five percent of days. I don't know
10:31
Speaker 1: what job will allow you to miss seventy five percent
10:34
Speaker 1: of the days that you're scheduled to work, But needless
10:37
Speaker 1: to say, that was the information that they gave me,
10:40
Speaker 1: that I could find a job that would allow me
10:43
Speaker 1: to miss those days. Jobs are not very forgiven in
10:50
Speaker 1: situations like that, and I ended up walking away from
10:54
Speaker 1: a job because I had an employer who was not
11:01
Speaker 1: very agreeable when it came to my condition and she
11:07
Speaker 1: didn't understand. And I don't understand why she didn't understand.
11:10
Speaker 1: But when you work with when you are dealing with
11:13
Speaker 1: a neurologist, they are specialty doctors and they usually don't
11:17
Speaker 1: work on Fridays. And the company that I was working for,
11:20
Speaker 1: we were closed on Fridays to see patients. However, we
11:25
Speaker 1: still had to come into the office. And when the
11:31
Speaker 1: temperature starts to change, the season starts to change. My
11:34
Speaker 1: body is affected by the change in the weather. And
11:38
Speaker 1: I let them know before I even got hired that
11:41
Speaker 1: this was going to be something that was going to
11:44
Speaker 1: be an issue for me, and if it wasn't something
11:47
Speaker 1: that they were going to be able to deal with,
11:50
Speaker 1: to let me know upfront and they could go with
11:52
Speaker 1: another candidate. Well, I got hired. The woman that hired
11:58
Speaker 1: me was not the lady who was actually over all
12:02
Speaker 1: of us, but the manager operationals manager. When she came
12:06
Speaker 1: in her attitude, she was basically on a power trip.
12:10
Speaker 1: And you know, you deal with some of those people
12:12
Speaker 1: who are on power trips to where if they don't
12:15
Speaker 1: have control at home, if they're in an authoritive position,
12:19
Speaker 1: they tend to abuse their power.
12:21
Speaker 2: And that was the situation.
12:23
Speaker 1: So when it came down to me having to miss
12:26
Speaker 1: days and go to these appointments with my neurologists, not
12:29
Speaker 1: just here in South Carolina, but I had to travel
12:32
Speaker 1: to North Carolina to get treatment and help due to
12:38
Speaker 1: kiari because there's not really many local doctors that specialize
12:44
Speaker 1: in treating kari, whether it's by prescription medications or holistic medications.
12:54
Speaker 2: So I had to travel.
12:55
Speaker 1: And so she didn't like that so I ended up
13:02
Speaker 1: she ended up trying to report me to HR. Well,
13:06
Speaker 1: what happened was the HR director sent paperwork for my
13:09
Speaker 1: doctors to sign off on, and it was fall it
13:14
Speaker 1: fell under the American's Disability Act, and with it falling
13:18
Speaker 1: under that, she had no basis to fire me. So
13:22
Speaker 1: she used it as if I was late for any
13:26
Speaker 1: reason that she felt was unacceptable, that.
13:32
Speaker 2: That would be the cause.
13:34
Speaker 1: Well, we ended up getting into a disagreement about I
13:41
Speaker 1: got a flat tire, I came in, I called and
13:46
Speaker 1: let her know that I was going to be there.
13:47
Speaker 1: I got there even before the office opened because I
13:51
Speaker 1: was at the tire place early and I got there.
13:54
Speaker 1: That was a Tuesday, that Friday. That Thursday, my face
13:58
Speaker 1: was so swollen because I was in so much pain
14:01
Speaker 1: that I could not be.
14:02
Speaker 2: At the front desk.
14:04
Speaker 1: And so I told her that, you know, I was
14:06
Speaker 1: going to utilize one of the days to go home.
14:09
Speaker 2: And she didn't like that very much.
14:13
Speaker 1: Needless to say, so, she told me that I was
14:17
Speaker 1: going to be suspended. So my question was, Okay, if
14:21
Speaker 1: I'm going to be suspended for what reason, for how long?
14:26
Speaker 1: And is it with pain? Those were questions that she
14:29
Speaker 1: refused to answer, so me being in the amount of
14:33
Speaker 1: pain that I was in, my face was swollen because
14:36
Speaker 1: I was in so much pain. To I just said,
14:40
Speaker 1: keep the job, I'm going home, and that's what I did.
14:46
Speaker 1: So working with a condition like this, just because people
14:52
Speaker 1: can't see, oftentimes what you're going through, they will try
14:58
Speaker 1: to make you feel bad for actually feeling bad.
15:03
Speaker 2: And there's nothing that.
15:05
Speaker 1: I can do with Kiari. There's nothing that I can like.
15:10
Speaker 1: There's no cure for this, so I can't make this
15:15
Speaker 1: go away. It's not something that is.
15:19
Speaker 2: Curable.
15:21
Speaker 1: I make the best of every single day that I have,
15:26
Speaker 1: the random dizzy spells, the numbness and tingling in my hands,
15:32
Speaker 1: and feed the horrible headaches, the ringing in the ears,
15:37
Speaker 1: the heart reputations. Earlier today, my son was talking about
15:43
Speaker 1: he touched my hands and they were ice cold.
15:46
Speaker 2: Now, mind you, I was under.
15:47
Speaker 1: A fleece blanket on the bed because I was taking
15:51
Speaker 1: a nap, but my hands were ice cold, so he told.
15:54
Speaker 2: Me, don't touch you.
15:56
Speaker 1: But I didn't touch him. He touched me first, anyway.
15:59
Speaker 1: That was just this is not an easy condition to
16:02
Speaker 1: live with. It's not an easy condition to deal with.
16:07
Speaker 1: Most people don't understand that if I tell you I'm
16:13
Speaker 1: not hungry, it has nothing to do with me not
16:17
Speaker 1: wanting to eat. Sometimes having this condition, I don't have
16:21
Speaker 1: an appetite. I don't remember to eat. It's even though
16:26
Speaker 1: I'm like a plus sized woman. You would think that
16:28
Speaker 1: I'm eating all the time, but I'm not. I don't
16:31
Speaker 1: have an appetite, and trying to get people to understand
16:33
Speaker 1: that it affects my appetite, it is hard for people
16:37
Speaker 1: to understand, and they're like, well, just eat something. Okay, Yeah,
16:40
Speaker 1: I can eat something, but if I don't like what
16:43
Speaker 1: it is that I'm eating, I'm going to throw it
16:46
Speaker 1: up because I will not be able to stomach it.
16:49
Speaker 1: And so trying to explain that is frustrating because people
16:54
Speaker 1: don't seem to understand that if I'm telling you I'm
16:57
Speaker 1: not hungry, I'm really really not hungry. And then there
17:01
Speaker 1: will be days where I binge eat and it's not
17:05
Speaker 1: an eating disorder. And what I mean by binge eat
17:09
Speaker 1: is meaning I will eat breakfast, lunch, and dinner. I
17:13
Speaker 1: will have the usual three meals, but they're still not
17:17
Speaker 1: like a full meal for someone else, like I might
17:23
Speaker 1: eat a whole thing of fruit I might eat a
17:27
Speaker 1: thing of like some vegetables, like some turnle, greens, cabbage, corn,
17:35
Speaker 1: just it's something like that, and that's not for everybody.
17:39
Speaker 1: So my journey with Kiari has not been an easy one.
17:43
Speaker 1: It has been one that not only myself and my
17:47
Speaker 1: children have had to learn to deal with and cope
17:50
Speaker 1: with and learn the signs and symptoms of when I
17:54
Speaker 1: am having a bad day, my face will be swollen.
18:02
Speaker 1: Not just my face will be swollen, but you can
18:04
Speaker 1: tell in my voice, in my body if I'm not
18:11
Speaker 1: able to move, Like as long as I'm up and
18:14
Speaker 1: I'm moving around, then it's fine. But the instant I
18:18
Speaker 1: have sat down for more than thirty minutes, it makes
18:22
Speaker 1: it very painful to get up and move around. And
18:26
Speaker 1: sometimes you'll never notice those things. But if I mentally
18:32
Speaker 1: tell myself that I have these things that I have
18:35
Speaker 1: to do, I'm able to get them all done. Like
18:39
Speaker 1: the other day, I cleaned the kitchen and I went through,
18:42
Speaker 1: cleaned out the refrigerator, put away some laundry, took all
18:47
Speaker 1: of the trash out, did all of that, and.
18:50
Speaker 2: By the end of the night, I was in so
18:53
Speaker 2: much pain that it hurt. And so.
18:58
Speaker 1: It's not easy, but I make it look easy. Yeah,
19:03
Speaker 1: I'm so sorry, I got to hiccups. So I'm not
19:05
Speaker 1: gonna be doing much more talking. But my journey with
19:09
Speaker 1: Kiari has been one of challenging, one of learning to
19:15
Speaker 1: pay more attention to my body, even though some days
19:18
Speaker 1: I am still very stubborn and very hard headed.
19:22
Speaker 2: But I don't take chances.
19:23
Speaker 1: When things stay numb for too long, or I have
19:27
Speaker 1: these nosebleeds that last for too long, or if I'm
19:33
Speaker 1: feeling too much pressure, too much pain, I will go
19:38
Speaker 1: to the hospital and get checked out. One of the
19:42
Speaker 1: reasons is hard for a black woman to go to
19:45
Speaker 1: the hospital because most of the time they thinking that
19:48
Speaker 1: I'm seeking pain medicine and I'm seeking relief for the
19:53
Speaker 1: pain that I'm in.
19:55
Speaker 2: So it's hard to.
19:58
Speaker 1: Advocate for myself in a sense of not just being
20:03
Speaker 1: one to seek medication because I'm not a pill popper
20:06
Speaker 1: and that's not something that I like to do. I
20:07
Speaker 1: don't like to take medication because I always look at
20:10
Speaker 1: the side effects of the medications before I even take them.
20:14
Speaker 1: So I always try to find natural remedies to help
20:19
Speaker 1: ease my pain and to help me get through my day.
20:24
Speaker 1: So going to the hospital or the emergency room is
20:29
Speaker 1: usually my last resort if I can't find comfort in
20:34
Speaker 1: the home remedies, so to speak. But kiari is not
20:41
Speaker 1: an easy condition to deal with. Advocate for yourself. Advocacy
20:51
Speaker 1: is very, very important when it comes to your health.
20:54
Speaker 1: Make sure that you are asking all of the necessary questions.
21:00
Speaker 1: If you are unsure about something, make sure that you're
21:04
Speaker 1: writing it down so when you do go to your
21:06
Speaker 1: next check up, our appointment, or whatever, that you have
21:12
Speaker 1: those questions and if your doctor is not making you
21:16
Speaker 1: feel comfortable, go and seek a second opinion. There's nothing
21:20
Speaker 1: wrong with that. People will always try to tell you
21:24
Speaker 1: that what they think is best are they try to
21:26
Speaker 1: minimize the symptoms that you're having because they don't see it.
21:30
Speaker 1: But you live with your body three hundred and sixty
21:34
Speaker 1: five days out of the year. You know when something
21:37
Speaker 1: feels all. So make sure that you are telling them
21:40
Speaker 1: when something doesn't feel right, if this is a new symptom,
21:43
Speaker 1: because with kiari, there is going to be something different
21:46
Speaker 1: that you're going to experience.
21:47
Speaker 2: And that's one thing that.
21:49
Speaker 1: I have noticed over the years, and as I get older,
21:52
Speaker 1: there are new symptoms also. I'm now going through menopause.
21:57
Speaker 1: So there's a whole lot of stuff that's going on
21:59
Speaker 1: right now that I don't always understand. But God has
22:04
Speaker 1: kept me covered, he has kept me going, He keeps
22:07
Speaker 1: everything that I need. So even on the days when
22:11
Speaker 1: I don't quite understand what's going on or what He's
22:13
Speaker 1: putting me through, he makes sure that I make it
22:18
Speaker 1: to the next destination that He has for me. So
22:22
Speaker 1: if I have given you any information, or if you
22:25
Speaker 1: have any questions, please feel free to reach out to me.
22:28
Speaker 1: And if I don't know the answers about KI my information,
22:31
Speaker 1: I will definitely find someone who does. But September is
22:37
Speaker 1: KI mal Information Awareness month. Color is purple, and I
22:42
Speaker 1: thank you for taking the time to listen to me
22:45
Speaker 1: and make sure that you advocate and love someone like
22:48
Speaker 1: myself who has KARI. And always remember, stay out of
22:52
Speaker 1: God's business. The only thing that he needs you to
22:54
Speaker 1: do is to be obedient to what He's called you
22:56
Speaker 1: to do.
22:57
Speaker 2: Good Night, you guys. I'm gonna share that video all
22:59
Speaker 2: my pain. Good night
23:13
Speaker 1: Hmm.