Kristi Schiller kept experiencing symptoms that she didn’t recognize as signs of stroke because they were transient. It took more than 6 months to get an accurate diagnosis.
02:49 The Initial Symptoms of Stroke
12:32 The First Incident
18:41 Ignoring The Signs
22:32 Patent Foramen Ovale (PFO)
32:20 Finding A Reason
40:38 Starting A Journal
45:04 Cutting Out Sugar
55:28 Importance Of Stroke Awareness
Kristi Schiller 0:00
I told my husband I dropped my phone walking up the driveway and it kind of got some dirt on it. I said, I’m gonna go in the bathroom, and I said I’m just gonna wipe my phone off and I’ll be out in a minute.
Kristi Schiller 0:11
He said I’ve must have been gone maybe half an hour. And so somebody comes and knocks on the door while the doors locked. I had come into the bathroom, and it’s almost like it was an out-of-body experience.
Kristi Schiller 0:22
I can remember everything happening. My head was throbbing. I could hear a ringing, but it’s not like I was a complete blackout. But it felt like it in my head. I dropped my phone when I walked in and I leaned over to pick it up and the momentum just carried me and as I fell forward, I hit the wall and my bell was pretty rung. But I remember laying there on the floor and I couldn’t move.
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:09
Hello, and welcome to another episode of the recovery after stroke podcast. This is episode 177 and my guest today is Kristi Schiller, the founder of the charity canines for cops, which is a charity that raises funds to donate canines to law enforcement agencies and school districts across the United States.
Bill Gasiamis 1:33
Kristi went and diagnosed as having suffered a stroke several months and wanted to join the podcast to raise awareness about stroke and the signs of a stroke so that others could get help quicker. Kristi Schiller, welcome to the podcast.
Kristi Schiller 1:51
Thank you for having me Bill.
Bill Gasiamis 1:53
Thank you for being here. Take two hopefully this time we’ll get through it and actually have a proper recording at the end of it.
Kristi Schiller 2:01
Yes, I know. We tried a few days ago, and I don’t know what it is, something about Texas, or you know, I don’t know what it is. But our connections weren’t loving each other. But I hope they’re better today.
Bill Gasiamis 2:16
The internet connection isn’t bigger in Texas. Everything else is big and good thing, not the internet connection.
Kristi Schiller 2:25
Well, I don’t know if you saw on the news last winter, but you know, Texas, get all their electricity cut off. We had none for some people a few weeks. And so it’s like everything’s bigger in Texas, but the political brains and the electricity.
Bill Gasiamis 2:45
Tell me a little bit about what happened to you.
The Initial Symptoms of Stroke
Kristi Schiller 2:49
Well, let’s see my symptoms started maybe a solid six months before I was diagnosed and maybe a year, I look back on it I had some auditory issues so severe ones, about nine or so months before football games, things like that any type of loud noises, brakes, cheering, anything would just feel like ice picks in my ear.
Kristi Schiller 3:20
And so, I did get the shot in January, and then got my second Moderna shot in February. And I didn’t think I didn’t have any complications didn’t think much about it. And I’m still not convinced that you know, it had anything to do with that because I was having issues before.
Kristi Schiller 3:46
But I started getting some severe headaches. And just the short term memory was just, it was horrible. In March of this year, I had a case of global transient amnesia. And I dropped my little girl off at school, I went to the grocery store, and we live on a ranch in Texas.
Kristi Schiller 4:12
So it’s nothing for me to have two or three carts. And as I’m ambling through the aisles getting what I needed everything, I’m kind of having to go to my phone saying, if I’m going to cook this, what do I need, oh, butter, and then it would just all the lights everything hurts so bad.
Kristi Schiller 4:34
So I went over to the pharmacy, I got some Excedrin and just thought, oh, it’s allergies. Well, by the time I got done, and the checkout boy was helping me out. He said, where did you park? I said I don’t know. And the sun was hitting me as I came out. And he said what do you drive? I said I’m not really sure.
Kristi Schiller 5:03
I just, and I’m trying not to embarrass myself in front of him, and he’s a young college kid. And so we finally figured out what my car is. And he says, I’ve never helped anybody with two carts before. And I said, I live on a ranch. And he said, Oh, you do? Which direction?
Kristi Schiller 5:25
I didn’t know there’d be a quiz. And he goes, do you live towards Austin towards Houston? And said I don’t know. And as the sun was penetrating on me, I had sunglasses on, but it was the pain was just unreal.
Kristi Schiller 5:44
And I couldn’t remember my husband’s name. I couldn’t remember my name. I said please don’t go get a manager or call the police. I’m not on drugs. I don’t think I need to be on drugs. But I’m just having these headaches. And because he looks pretty alarmed.
Kristi Schiller 6:04
And a lady was going by and she stopped me. And she said, I went to a charity event, she didn’t know the episode I was having. She said I went to a charity event at your ranch. And because I have a charity canines for cops in America, and she said, You’ve such a beautiful ranch, and I said, what direction was it?
Kristi Schiller 6:30
And about that time my husband called I couldn’t have told you my husband’s name. And it, you know, on the iPhone, it gives the name and the picture, and then the title of the company, however you have it set up. And I said, I told the boy, I said, look, that’s my husband I think.
Kristi Schiller 6:49
And I’m trying to make jokes as I’m going along. And I just feel like it’s bright, it hurts, but yet, everything’s getting more narrow and darker. And, I said look, it says he’s the CEO of an oil company I did pretty good huh? I’m trying to make the guy laugh. But the minute I hear my husband’s voice, I started crying.
Kristi Schiller 7:13
And I said, I don’t know where we live. And he said, what? He said, where are you? And I told him, I said how do I get home? And he said, did you taste something in the store? It’s when he hands you like a sample of some food? And I said no. And he goes, well, you take a left out of the driveway and go seven miles and you’re in front of our ranch. So okay, I can’t believe I drove myself home.
Kristi Schiller 7:45
Then the headache was just so omnipresent for about 48 hours. I went to the doctor, and I said, Look, I think I have a brain tumor. I mean, it’s that serious. And he said, No, you don’t, I said could I have dementia? He says no. So he pulled blood. He says your blood is fine. You know, it’s probably just allergies.
Kristi Schiller 8:12
Okay. So a month later, we went to a friend’s birthday party. And we drove about an hour and a half, two hours to Austin. I remember getting there, we got there about 5:30 in the evening. And, he lived on a big lake. I don’t remember anything after that.
Kristi Schiller 8:32
And actually, I had given up I only have red wine. But I decided when these headaches started back in January or the Christmas time, I was going to give up red wine because I thought maybe it’s the tannins. It’s something that’s causing these horrific headaches.
Kristi Schiller 8:50
And so I didn’t have anything. And he said I was just not making sense, like one minute and I was so thirsty. So he says, Look, I made us a reservation. And I have a girlfriend, that’s kind of a celebrity and interior designer. She was there and she said I want to tag along. We went to this, this fancy steak house.
Kristi Schiller 9:16
And we see our neighbor. I don’t see him. I mean, apparently I did. And he’s a politician here in Texas. And he said, he sent me a text. And my husband said I just locked in and just kept looking at this text. And he says, oh, Kyle’s here.
Kristi Schiller 9:42
So I don’t remember any of this the next morning. He starts referring to his daughter and says, you know, oh, his, you know, Kyle’s daughter is going to do so great in school and what a pretty girl and I said, who?
Kristi Schiller 9:58
And he says the little girl’s name and I said why do you keep talking about them? I mean, they’re lovely people, but you just keep bringing them up and he said we were with them for three hours last night, they ended up eating with us.
Kristi Schiller 10:15
And he said, so he took me back to the doctor. Doctor never said, let’s get an MRI. Let’s get a CAT scan. I can pull more blood, but I can tell you, she’s fine. Everything comes back fine.
Kristi Schiller 10:29
Pulled more blood. Everything was fine. So about two and a half, three weeks goes by. And I have an appointment back in Austin at the governor’s office for my charity. And right before I sat down, I said, Is there somebody here who can give me an aspirin. Just that morning when I got up it was doing it again the throbbing.
Kristi Schiller 10:56
And so 8 or 10 people sat around this table, and I got ready to speak. I couldn’t remember the name of my charity. I couldn’t remember what we did. I just said I just need a minute. I think this is allergies. Well, again, called the doctor. And he said look, I mean, the only thing I saw was your little own vitamin D.
Kristi Schiller 11:26
Okay, so now, that was May, now we go into all the way to the end of June. The headaches were still kind of there. But I mean, I kind of learned to try to, you know, deal with it.
Kristi Schiller 11:45
So we were at a friend’s house for his birthday party. And I kept dropping, I noticed after that time in May, that I forgot about dinner to the governor’s office. So now it’s about eight weeks have gone by I just dropped everything. And I go to put my hand and to like, open up the car door in would miss the whole handle.
Kristi Schiller 12:13
And then I was like whoa, you know, how did I miss that? And in just everything that I got ready in, you know, I had cut back on added sugar. I’m like, Okay, now you’re going to go gluten free, I guess now’s the time you’re going to get healthy and to do what gave up red wine.
The First Stroke Incident
Kristi Schiller 12:32
And I told my husband I dropped my phone walking up the driveway, and it kind of got some dirt on it. I said I’m gonna go in the bathroom. And I was feeling dizzy, but I didn’t want to alarm him. And I said, just gonna wipe my phone off. And I’ll be out in a minute.
Kristi Schiller 12:49
Everybody 20 people, they start mingling and get ready to sit down. He said I must have been gone maybe a half an hour. And so somebody comes and knocks on the door. Well, the doors locked. I had come into the bathroom. And it’s almost like it was out of body experience.
Kristi Schiller 13:07
I can remember everything happening. My head was throbbing. I could hear a ringing. But it’s not like I was a complete blackout. But it felt like it in my head. Again, everything had gotten really narrow. But I could hear like people talking to the door on the other side, I can remember that.
Kristi Schiller 13:30
I dropped my phone when I walked in and I leaned over to pick it up. And the momentum just carried me and as I fell forward, I hit the wall, Venetian Plaster type wall. And my bell was pretty rung. But I remember laying there on the floor and I couldn’t move and I was like, I bet I jammed my neck.
Kristi Schiller 14:00
Or I’ve got a pinched nerve. That’s what’s wrong with me. But yet I still couldn’t move when I was laying in the floor. A few minutes later. I hear it, tap tap tap. And you know we’re ready to sit down for dinner.
Kristi Schiller 14:15
So I remember kind of sitting up and getting a washcloth and you know, I’m like my neck God It hurts so bad in from my ear to I guess my collarbone just felt like I must have landed on it that way.
Kristi Schiller 14:31
Well, it proceeded to get a lot worse in the next few days. I switched pillows. I you know of course WebMD is the death of all of us. You know we all go on and you know everybody’s dying.
Bill Gasiamis 14:44
Kristi Schiller 14:46
Exactly. So I went on and it matched everything to a pinched nerve and I thought that’s what I did I must’ve hit it. So I start putting a heating pad and then I start putting ice on I call a neurosurgeon I know in Houston. And I said, look, I was afraid to kind of get out anywhere that you’re going to catch COVID In wards, you just got to go the emergency room and tell them that you don’t feel good, where you’re gonna wait with 30 really sick people. And this is how you get it. So, it was July 12. So June 29 was the night that I passed out on the floor. So that went all the way up until the night of July 11.
Kristi Schiller 15:39
I was still having a hard time sleeping. So my neurosurgeon in Houston said, I’ll order more when you get here. But you have to come with an MRI as a baseline. I mean, I don’t order that I’m too high up on the totem pole. Basically. I don’t order all that. So let me see a recent MRI and, you know, we’ll go from there.
Kristi Schiller 16:06
Okay, so I had had some disk problems about 10 years ago in my lower back. So I thought, That’s it. It’s just moved up my neck. And this makes perfect sense. I know I talked myself into it. I was very hot that night. And the temperature I’m embarrassed to say, I don’t know what you do what I’d be over there, but it’s 65 degrees fahrenheit inside my house.
Bill Gasiamis 16:30
That was your heating on?
Kristi Schiller 16:36
Oh, no, no, no.
Bill Gasiamis 16:39
The air conditioning.
Kristi Schiller 16:40
Bill Gasiamis 16:42
65 Fahrenheit to Celsius is 18 degrees Celsius. So you had it on because you were trying to get cooler because your body felt hot okay.
Kristi Schiller 17:00
So I went to bed about and I even called my female doctor, and she’s a girlfriend and I said, Cindy, my neck is jammed. And I’m so hot. And what can I take as if I had anything, what can I do? And she goes, Well, you know, is it I hate to say it, I don’t want to poke she and I are the same age, she said that it could be like menopause okay, well, I guess that’s it.
Kristi Schiller 17:36
And I have a jammed neck and I have to find a different pillow. So I’m walking around with my iPad by key pack. And I tried to get up that morning, when I was laying flat. I was so nauseous after I slept for two or three hours. And I felt like even in the dark, the room was spinning. So I put my foot on the ground to try to go to the bathroom. And I just knew I was going to.
Kristi Schiller 18:18
Did I eat something? Still trying to piece it all together. Well, by 3am I said I can’t stand this the nausea is just too bad. So I got up and went into the frigerator. And I remembered I had a cold pack. Like for sprains or if somebody falls down and wrap it around your, you know, joint or leg or whatever.
Ignoring The Signs Of A Stroke
Kristi Schiller 18:41
So I went to the freezer and when I opened it up, everything was dark in my kitchen. And when that light hit me in the eyes, everything just started to exacerbate and get much more narrow. And that’s the last thing I remember when I went down. And so I had my hands trying to steady myself on the glass shelf in the freezer.
Kristi Schiller 19:04
So when I fell back, I pulled it and it all came out. So it made a loud noise that wakes my husband up. So he comes in and he says I see one foot sticking out behind the island, and I am calling your name. And he said you had two half gallons of ice cream that have fallen out by your end.
Kristi Schiller 19:27
And he’s like, Hey, do you want some ice cream? And he said you just started seeing everything was you know, and he got over me to help me. And I was like you’re sitting on my chest. I can’t breathe he said I’m not touching you. I’m trying to help you and everything just felt like it was getting smaller and tighter.
Kristi Schiller 19:48
And we still didn’t go to the hospital. Because I’m like whatever it is these allergies or maybe I said she says it can be pre menopause. It didn’t seem worthy enough to me. I don’t know. I know it sounds crazy looking back on it. But a friend of my husband’s his orthopedic surgeon for Texas a&m University.
Kristi Schiller 20:13
So he’s telling him about these crazy episodes. And he said, You know what? Just what are y’all doing tomorrow? We open like 8:30 in the morning, but come over an hour before, no one’s gonna be there. Just me and I’ll have it a tech come in. And I’ll run her through the MRI machine in my office and then you can take that to your doctor.
Kristi Schiller 20:38
Wow, gosh, that sound like heaven. Great. Well, as I was trying to get dressed, after about 30 minutes of being in the machine, I noticed I kept missing my buttons I was by myself, and I couldn’t quite get it in the hole.
Kristi Schiller 20:53
When I finally got it in, I was three buttons off, like nothing was lining up. I remember there was a tap on the door. And it was my husband and Dr. Brimhall. And my husband’s like you need to sit down.
Kristi Schiller 21:08
I said okay. And then Doctor said you’ve had massive strokes. He said in what you’re feeling is all in your carotid artery. I said, Wow. Well, I found out that I think there was five of them, but they only count for one stroke.
Kristi Schiller 21:28
Where in there in the same artery. So we’re driving to use them. So it’s about an hour, 10 minutes. So we drive into the medical center, and I wait. And it takes them about 11 and a half hours to get me and to some place a neurological spot there. And so they start running tests, I’m guessing I’m there a week or so.
Kristi Schiller 21:59
They can see the strokes, arteries, there’s no clot there’s no buildup, there’s no nerves, and it’s, they were ischemic strokes and they said that we don’t see a bleed so they ran more tests, more CAT scans, MRIs, spinal taps, I mean, you name it, they ran it.
Kristi Schiller Has Patent Foramen Ovale (PFO)
Kristi Schiller 22:32
So I have the most amazing neurovascular neurologist and her name is Dr. Tenu, Garg. And I was put with her and I was put with a heart doctor, they did find a PFO, which is a hole in the heart that I’ve had since it was born. She said, this has to be what it is, because that’s the only thing that’s left.
Kristi Schiller 23:00
Well, they did some more tests. And they did it a little implant on my chest, that it’s not a pacemaker, it just sends a note somewhere and let them know if there’s any arrhythmia and I don’t know if it’s India or Indiana, I can’t remember.
Kristi Schiller 23:21
And so it lets them know if there’s any, you know, arrhythmia or anything like that. And so she’s like, I just feel like this is there’s something else. I’m not sure what well I went back after I was released from the hospital, I went back for some more meetings. And I met with her and the department head.
Kristi Schiller 23:45
And then they did some tests and I came back 10 days later, I remembered my vascular neurosurgeon that I looked at the department head and I said thank you so much for taking time out of your day. I can only imagine how you know busy you are. I said your office is lovely.
Kristi Schiller 24:06
She kind of looked at me and my husband’s well you remember Dr. Jones? I’m so sorry. I said did I meet you in the hospital? He said you spent two hours with her less than a week and a half ago here in this office. I said I’ve never been in this office.
Kristi Schiller 24:32
And so little the short term has really given me a hard time so she looks at me that day and she said I think you’ve had another stroke. I said how can you tell and she said I just want to go and have another MRI. (inaudible) they order when the medical center. It’s considered speedy if you can get it 10 days, I mean, it’s such a big place.
Kristi Schiller 25:03
And I went, and they lined me up for another one. And I came back a few days later, early in the morning, and the stroke had moved to my brainstem or not moved, but another stroke, a pons. Right on the brainstem.
Kristi Schiller 25:22
And again, they put me back in the hospital, ran more tests another series of everything, and still can’t find anything. So I said, you know, a million and a half dollars worth a test later, it’s a two cent baby aspirin, I feel like that keeps me alive every day.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called a seven questions to ask your doctor about your stroke.
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 26:44
So, you know, this whole time do you think you were going to the doctor and giving them the wrong information? Of course, you weren’t telling them that you’re having a stroke if you didn’t know that much. But were you being kind of were you underplaying what was happening to you, therefore, maybe, unintentionally misleading them and then making it harder for them to know what was going on with you?
Kristi Schiller 27:15
No, no, because I was coming back. You know, I came back three times in four or five months for the same thing. So how much blood can you pull? And of course that didn’t show anything? Except a healthy girl.
Bill Gasiamis 27:34
Yeah, and that’s the problem when you diagnose somebody, by the way, they look on the outside. And I suppose when you’re at the doctor’s appointment, your amnesia is not there. Everything is okay, most of the time is that right?
Kristi Schiller 27:50
Well, the short term was affected. The, what they diagnosed is the amnesia, that’s usually about or a little episode. Usually that affects someone, two to maybe five hours. So it’s an it’s where they say, to have it more than maybe two or three times. So again, I just thought, it’s my short term memory, So I started loading up on vitamins.
Bill Gasiamis 28:28
You do what you can and you make decisions, and you look at the internet, and you try and solve your own problem. And COVID is a real issue because a lot of people are not going to the hospitals, and not getting serious help when they need it because they are afraid of COVID or there’s an over demand for hospital beds or whatever. And people are going well it’s not that important, I haven’t got COVID or probably don’t have COVID.
Kristi Schiller 28:54
Right. And I mean, I live in the middle isolate on our ranch. And so I just thought, well, as long as I’m out here, I’m safe. And I mean, I dreaded just going to see my regular doctor. And, you know, there wasn’t, you know, and I came straight from the parking lot and went straight, like I waited.
Kristi Schiller 29:14
And I just kept thinking I just don’t want to catch COVID. And that was the whole reason when someone said, why don’t you go to the hospital right away? Well, you know, and when, maybe let’s say I test negative for COVID. They’re gonna say we have a lot of really sick people here. We’re gonna have to put you over here and we’ll get to you when we get to, you know, and so I just didn’t want to be put in that position.
Bill Gasiamis 29:41
Yeah, how would you know? You don’t know. So how are you going through life and managing your life? So you got a little daughter, and how are you getting through that? Because I imagine with these episodes that you’re having, you’re involved, your daughter’s around like that’s happening with her around, haw’s she managing it? What is she feeling?
Kristi Schiller 30:04
Well, she is 15 and a half. And so she in America, we get our driver’s license, at least in Texas, when you’re 16. So the doctor they wrote her letter that she can get hers early. She’s like, sorry, you had to take one for the team Mom, I get my driver’s license early.
Kristi Schiller 30:26
There’s that. I’ve had a little, a few bouts with just seizures. I guess maybe, you know, I probably had maybe a half a dozen. And I had never had that before prior to this. And, you know, I it’s just you kind of just don’t know when it’s coming on.
Kristi Schiller 30:50
And they are not like a grandma. But all the free thing you’re hearing sounds like it’s kind of at a distance. And then I know that wherever I am, I need to even when I’m sitting down and need to lay flat. Because it’s about to happen.
Bill Gasiamis 31:13
Do you you talk about it so matter of fact? Is a concerning? Is there any fear there? Like what’s going on for you, though?
Kristi Schiller 31:22
Of course, I mean, I’m petrified. I mean, I feel like, I’m not even middle age yet. So you know that, you know, you have so much life left to live. And, you know, I’m not really supposed (inaudible) drive. Now, my ranch is big enough that I’ll putz around and get in my car and go to different parts of it.
Kristi Schiller 31:54
And every now and then, if I need something that’s close by the grocery store, whatever, I’ll sneak to town. But yet my family has an app. It’s like, you know, it’s kind of like being under house arrest. Ding ding ding she left the ranch. And where are you? And they’ll you know, you need to come back home. Okay.
Bill Gasiamis 32:16
Are you consenting to that or are they doing that under duress?
Kristi Schiller Finding A Reason
Kristi Schiller 32:20
Yes. And we know I’m consenting to it. But it’s just, I would never say why me I was because I was in broadcasting for years. I started a charity that is now global. And so maybe a higher being or something in this world decided, you know, what, if this is going to happen to someone, I’m going to give it to her.
Kristi Schiller 32:50
Because she can be a voice. We just have to find out what it is I’m going to be a voice for. But I just feel that there’s and I’ve been able to reach out to other people like in facebook groups that are kind of, you know, younger, or or just going through similar symptoms.
Kristi Schiller 33:11
You know, I’ll go on to say, Does anybody else? You know, what happens when you experience these seizures? Do you feel nausea afterwards? Do you feel is your head hurting? How long should I go, you know, with my head hurting like this? What’s not normal? Because none of it’s normal.
Kristi Schiller 33:30
But has anybody else experienced that? And it’s really, I’ve really met some really interesting people. And, and for the longest time, I was really embarrassed that I didn’t know it. This is what was happening to me. And they were like, how could you not will? I went to a doctor.
Kristi Schiller 33:55
And they didn’t know. And they sent me back home. And he agreed, you know, maybe it was allergies. And I called my gynecologist. She’s like, Well, you seem fine. But when it would happen, it was severe. And so, you know, I keep trying to find the positive. Maybe this has happened to me, because vocally, I can handle it. I don’t know. I am just trying to find the positive in it every day.
Bill Gasiamis 34:32
Yeah, I think that’s a great thing to do. I think doing that does help to focus the mind because there’s a lot of things that we can worry about after these types of situations. And that doesn’t make it better. That makes it worse, because emotionally mentally, that impacts your physical, your physiological state.
Bill Gasiamis 34:52
So it’s definitely better to look for the silver lining if there is one and it may be hard to find but at least you’re focusing on trying to find it. And if it does pop up, you’ll see it you’ll, you’ll go well, okay, that’s what it’s about for me. And it might take a while and some people that are going through the hard times.
Bill Gasiamis 35:12
They are struggling with that they’re focusing on why me they’re focusing on this shouldn’t be happening to me, or what did I do to deserve this? Or that kind of stuff? You’re born, you’re alive. That’s all you did. And that’s part of being alive, you have to go through shit sometimes.
Bill Gasiamis 35:29
And unfortunately, sometimes the shits not pleasant and, and hangs around for longer than you want it to. So you just have to look for the silver lining. And kind of that was for me, what kept me going. I had three brain hemorrhages over three years, and then brain surgery.
Bill Gasiamis 35:46
And for me, it was the whole exact same thing. It’s like, what can I do? That’s going to make it better? How can I support myself? How can I get through this? What can I learn from this? And and that made it so that I didn’t focus on? I wonder if I’m going to have another one? And when will the next one be? and all that kind of stuff. And I just made I prepared? You know, I love this saying I’m not sure exactly who says it, but it’s like, expect the best and prepare for the worst?
Kristi Schiller 36:18
Yes, absolutely. And no, I say if it’s my time, it’s my time, I don’t want it to be my time. But I’m definitely going to use, and it’s been a wake up call, again, they haven’t figured out what’s causing this. But it’s been definitely been a wake up call that if somebody means something to you call them or go see them.
Kristi Schiller 36:49
And you know, tell people how you feel? Or if there’s something that you want to do, do it. Because this is not a dress rehearsal. I mean, we’re here. And I still keep thinking that, you know, after my second lumbar puncture, I was like, there’s got to be a reason that I mean, I’ve got the best doctors in the world.
Kristi Schiller 37:19
And if you know, all the surgeons standing around half a dozen of them are still scratching their head. When it happens, I don’t know if it’s just gonna be Wow, we didn’t think of that or I had been tested for MS for lupus, jak 2, Lyme disease, Moyamoya. I mean, the list is just so long.
Kristi Schiller 37:51
And you know, for brain cancer for tumors for and I’m having another CAT scan and a few days. And, you know, it’s just that many experts and that many pieces of fine equipment, you know, whatever it is that they use, and all come back scratching their head.
Bill Gasiamis 38:14
At some point, there’ll be an outcome. You seem to take it all in your stride though, like, Is this how you always are? Are you just cool calm and collected? Because this is really… Is it just a facade?
Kristi Schiller 38:30
Well, no, I mean, I’m pragmatic, but at the same time, if we don’t know what it is? I don’t know what it is. I’m going to whine about.
Bill Gasiamis 38:43
Kristi Schiller 38:45
I mean, if it were just said, Look, you have, you know, a tumor in your brain and we didn’t see it and it’s pressing. I’m like, okay. At least now, at this point, we could go somewhere with it and say, Okay, who is the best at what? And we just can’t get that far. And like I said, it’s been almost 9, 10 months. And you know, we don’t know what it is. So I don’t know what I have to worry about. I mean, if if I don’t know what it is, I can’t really bitch about it.
Bill Gasiamis 39:19
Yeah. Is it a little bit of control what you can and let go of what you can’t type of thing?
Kristi Schiller 39:30
Absolutely, absolutely. I mean, look, you know, at the end of the day, all of a sudden you wake up and you say I’m not the center of the universe. Shocker. But I’m not. And you In fairness, as Dr. Gard told me in the beginning, I was really I was panicking. I was having panic attacks.
Kristi Schiller 39:56
And every time I start to stutter, or something like that, that I’m like, Okay, is it coming? Then you start anticipating it. And she’s like, I’m throwing, and I bet I text her more days in a week than I do my husband. And I’m like, Hey, have we thought about this? I just saw this.
Kristi Schiller 40:20
And she’s like, yes, we tested for that. Okay. Well, have we thought about having my water tested? She goes how long have you been drinking that water. And I was like, 15 years of this Ranch, she said, It’s not the water.
Kristi Schiller Starting A Journal
Kristi Schiller 40:25
Okay. I mean, but you can spend your whole life. Yeah, that can be your job. I kind of rather you know, I started journaling on what, really, and I had to, because if not, I’d forget certain things. And so, before I was even diagnosed, I, my short term was so bad. So if you and I were sitting down having dinner, and you proceeded to tell me a story about what happened you.
Kristi Schiller 41:17
And maybe you didn’t know that I was sick, I’d say do you mind, and I take out my little, my little pad. And I start taking shorthand while you’re talking. Because that’s how fast my memory could leave me. And so, you know, I would just start the bullet points of what somebody was saying.
Kristi Schiller 41:43
So I could be sitting at a table with a dining table 10 or 12 people, I’d pull up my little pad and I remember I didn’t one time and didn’t explain it to someone they say are we boring you?
Kristi Schiller 41:54
I said no. So then I explain the whole thing. And they felt bad. You know, I get to wear water. I, you know, I say I’m gonna drink a gallon of water a day I try to everyday when I start out. That’s my goal. I don’t actually ever hit it. Because water is pretty boring.
Bill Gasiamis 42:14
Yeah, and that’s a lot of water.
Kristi Schiller 42:16
That’s a lot of water. But I’m thinking if I can just flush out of my system. I mean, we wear sunscreen as a preventative. Think about it, the things that we do, we brush our teeth with fluoride as a preventative.
Kristi Schiller 42:33
You may or may not take a flu shot or a COVID shot to protect us. And you know, sometimes I feel like I’m swinging without a net. What am I doing wrong? They told me nothing. But what am I doing, that’s not protecting myself?
Bill Gasiamis 42:51
I agree with them, that you aren’t doing anything wrong. And what you’re doing is trying to solve a problem that it may be is not in your hands to solve, but you’re going about it the right way. I think you’re going okay, so what can I control? What What can I do? And if I’m not doing anything?
Bill Gasiamis 43:11
If drinking a gallon of water is okay, unless I’m not drinking a gallon of wine. Do you know what I mean? Like, it’s like, yeah, you’re doing something, and you’re not making it worse. And that is a really good thing. And same with me, I was out to dinner last night with some friends.
Bill Gasiamis 43:35
And we’ve known each other for two and a half, three years. And still, every time we go to dinner, they asked me about we’re going to grab a wine Do you want one and every time I say no, I don’t drink anymore, and I can’t drink. And we go through this whole thing every single time.
Bill Gasiamis 43:53
And basically, what I haven’t said to them is, is I’m doing the things that I can do that doesn’t make my situation worse. I’ve never explained it like that to them. And that’s what I’m doing and drinking wine. I enjoy it. And I love the taste of wine. I love the way it makes you feel during a meal.
Bill Gasiamis 44:12
But I don’t like what it does to me post-stroke and how it makes me feel makes me feel like I’m having another stroke. And if I’m going to have an if I’m going to have a wine, and I’m going to think about the possibility of having another stroke, or it’s going to trauma, bring up a trauma from my previous three episodes. So that takes the fun out of it. Like there’s no point.
Kristi Schiller 44:37
Because now you’re focused on that wine.
Bill Gasiamis 44:38
Yeah, and I’m creating that anxiety which makes everything worse and there’s no need to go down that path. So I love what you’re doing. You’re taking matters into your own hands in the areas that you can control. They’re minor, but they really major in how they make you feel emotionally and how they make you feel some control in the situation. Would you agree with that?
Cutting Out Sugar
Kristi Schiller 45:04
Absolutely. You know, I try to cut out, I don’t know if anybody’s capable of cutting out sugar, because it’s in so much. But you know, it was a wake up call, like the added sugar, I was never a soft drink drinker.
Kristi Schiller 45:24
But just sugar is in everything. And so that gave me anxiety, my doctors like, okay, added sugar, let’s just don’t do this overnight, because you’re going to drive yourself, you know, to a point of anxiety that you can’t come back from.
Kristi Schiller 45:44
She said, but try to watch, don’t add any extra to it, you know, just try to awareness. And I want to say that the reds and then the average American has like an extra 18 pounds of sugar a year in the eye is something that I never would have guessed that. And again, it’s trying to get enough sleep. My sleep, it’s been very, very hard for me to fall asleep.
Kristi Schiller 46:14
And then you kind of feel just so lethargic in the morning. And, you know, I you know, it’s it’s the anxiety, I wouldn’t say it’s so much um, the and I have little bouts of I’ll go ahead and say I have little bouts of anger. Like if somebody so let me do that for you. Okay, I’m not an invalid.
Kristi Schiller 46:40
And then I’m wonder how do other people look at me now? You know that that has to be around me all the time. I don’t think people think twice about it. They don’t know me know, that, you know, I was having these little fits of just pissed off. And I didn’t know what I was mad at.
Kristi Schiller 46:59
And so I went back and I said, look, I don’t want to seem ungrateful. And I told my doctor, I said, I’m just having these I don’t know what I’m mad at. But it’s like, everything irritates me. She said, that’s part of the stroke.
Kristi Schiller 47:15
Like, Oh, okay. Okay, so that part wait, wait, I’m normal? She’s, well, in that sense that you’ve had a stroke, that part of it is normal. And in certain days, like I made sure today that I went to bed early last night. By the time you and I were going to meet today that I had lots of rest.
Kristi Schiller 47:37
Because after a certain time of the day, if you didn’t know me, you think Shinsen of country club day drink, you know, my words will start to come out. And if I say, you know, I need a glass of water, it will be dry. Water are the words. It’s what I’m feeling.
Kristi Schiller 48:09
And maybe the words are jumbled. And I was at a salon after I got to the hospital a few weeks ago. And there was a woman next to me. And underneath my sweater, I had my hospital band. And I had, I don’t know, I didn’t want to take it off on it there and I pulled it down.
Kristi Schiller 48:31
And I have a big clear water jug thing with me. And I’d put some of the flavored sugar free, you know, Berry or whatever is in there. And so it kind of looked pink. And I was having a hard time explaining to the person cutting my hair. And I see this woman looking at me and I could feel her looking and I could see her in the mirror.
Kristi Schiller 49:00
And I would try to drink more. I thought okay, I’m more hydrated, because that’s what’s happening. And then I saw her kind of roll her eyes. I was like, bitch, I had a stroke. She’s slike, and I’m like I don’t know where that came from. And she goes, Oh, I wasn’t judging and I go yeah you were you thought I was drunk?
Bill Gasiamis 49:21
She thought you were drinking Rose.
Kristi Schiller 49:24
She thought I was drinking Rose and she was well that’s what it looked like. And I was like well just goes to show you that looks can be you know it’s not everything you think it is. And then she and I got a good laugh out of it. I saw her looking hard at me for maybe 15 minutes. I was like I just I can’t do this. I’m the internal anxiety is so bad.
Bill Gasiamis 49:46
Yeah. People who haven’t been what we’ve been through judge, and that’s okay. Because they they ignorant they don’t know any better. And that’s me that’s what who I was, that’s what I was like before this. So at the moment, it’s like, oh, okay, you’re just like me before anything bad happened to you.
Bill Gasiamis 50:09
So alright, I get it, no worries, please stay that way stay ignorant that’s better for you and your health long term. And it’s a short way to find out what it’s like to be a stroke survivor is to have one that’s done away. And it’s, you don’t want to know that way. You’d rather not know my thing.
Bill Gasiamis 50:29
My biggest issue is that nobody understands what I’m going through, other than stroke survivors, and my they really don’t. And that was frustrating me at some point, because I couldn’t explain my needs. But then I realized that I would never want them to know what I’m going through. Because there’s only one way for them to really know. It’s like, forget about it.
Bill Gasiamis 50:52
I’ll just educate them when the time arises. And I won’t judge them back for being judgmental to me. I’ll just go, alright, let me explain something to you. And then we’ll bring everybody together on the same page that I can stand. And then maybe next time they see somebody who’s struggling, and they won’t automatically assume that the person is drunk.
Bill Gasiamis 51:14
They might go, Hey, do you need a hand? Because often, we even get judged as stroke survivors going to hospital I have heard so many stories where a stroke survivor will go to a hospital with symptoms of a stroke on a Friday or a Saturday night. And the hospital goes, wow, I mean, here is another drunk guy, another drunk girl. They’ve just come out from being out on the town. Just put them in a corner and make them wait. I was like oh that’s rough, you know.
Kristi Schiller 51:46
I don’t know if you can see this.
Bill Gasiamis 51:49
Kristi Schiller 51:53
Can you see that?
Bill Gasiamis 51:54
The photo of your brain there? And then there’s a yeah, there’s a white spot?
Kristi Schiller 52:00
Oh, yeah. Okay. So that was one of the larger ones. And I have to tell you, when she first pulled that out, and I saw that it seemed like my whole life froze for those 10 seconds, because I thought maybe it’s brain cancer.
Kristi Schiller 52:22
I mean, I didn’t know. And I felt almost relieved when they said you’ve had strokes. I was like okay. I mean, you know, I hate to be that way, but I’m not taking the strokes, lightly. But I was so relieved. And I can just remember crying thinking, so it’s not brain cancer.
Kristi Schiller 52:51
And she said, you know, because I was having such a hard time processing everything. And she said, No, she said, but she immediately said, we know it’s the hole in your heart. Well, so then they told me did some more tests. And a cardio surgeon came back and said, I can repair the hole in your heart, it will only prevent the strokes, 2% to 4%. Well, then why bother?
Bill Gasiamis 53:19
Yeah, I’ve heard that before for a lot of people that sometimes they avoid surgery. And I’m not a doctor or an expert, but sometimes I understand why it’s okay to if you’re going to do it to live for a little while and manage it with medication because you’re under duress already.
Bill Gasiamis 53:40
You know, there’s a heart surgery, maybe that’s going to happen, you know, maybe the doctors have got a good plan about that. And it’s something that you can settle in the future. This happened to you. It’s very fresh and very early, you immediately wanted to come on and share you said you wanted to raise awareness like who do you hope is listening to this that are going to go oh okay I should pay attention to Kristi?
Kristi Schiller 54:08
Well, between all the avenues on social media. I have about a million followers, and I’m going to make sure everybody that is out there gets a copy of this. I mean, just because if it can happen to somebody, that was my age. I’ve never had a cigarette in my life. I’ve never had a beer in my life.
Kristi Schiller 54:30
I mean, you know, yeah, I like sweets, but I’m not sure cheesecake will kill you. I mean, I guess if you have enough of it. But you know, I’m just trying to think of like vices and things like that. I mean, I couldn’t think of any enough. And then you beat yourself up that am I just that damn dumb that I didn’t see it?
Kristi Schiller 54:53
And when somebody goes and you didn’t go to the hospital? Well, yeah, hindsight. 2020 I wish I would know exactly, but as far as I’m concerned, I thought okay, and then I talked one of my dear friends suffers from migraines, and she has since she was young. And I was like, almost wanna throw up it hurt so bad she goes yep, migraine well in a way it was, but that was a byproduct of what was happening. So I just counted it as migraine.
Importance Of Stroke Awareness
Bill Gasiamis 55:28
And if you had known somebody that had a stroke beforehand, you might have thought, Okay, I wonder if it’s a stroke. But you never knew anybody that had a stroke before. And if you had, you never had a deep conversation with them to find out what it was like.
Kristi Schiller 55:42
I have, like my grandmother died of a stroke when I was like four. I mean, I expected something very elderly, and maybe had other pending issues. I really didn’t think about like I said, I didn’t know anybody or if I did, I wasn’t aware that they had. But you know, I still get a little tongue tied, trying to get it out.
Kristi Schiller 56:11
But you want people to be aware, what if I had caught this earlier? You know, what if I had gone in and said, I’m going to see I’m insistent, because I didn’t know about neuro vascular neurologists, you know, and I probably wouldn’t have gone, you know, to directly to a specialist, but at least would have gone somewhere I would have demanded a cat or an MRI or, and said, You know, I really think that there’s something more.
Kristi Schiller 56:46
And so when they were like, you know, you’re healthy, your blood pressure was very low, I’ve always had very low blood pressure. Um, and as I submitted slow, that’s good, right? And, you know, my neurologist said, you’re on your low life, that it’s just as bad as when you have high because it’s fighting just as hard to try to, you know, keep up.
Kristi Schiller 57:12
So if I would have looked at those signs, and then never having migraines, and then all of a sudden loss of words, the short-term memory is what scared me the most. And the, my rock in my foundation, her name is Kristen, will call and tell me something. And she’s in a few hours there, she said, Are you gonna send me that?
Kristi Schiller 57:40
And I was, like, send you what? She was we just talked about it, and I have to go through my phone. So we had a 45 minute conversation about something. And then I thought, okay, and I was like, maybe I had dementia. And my doctor said it doesn’t happen that way. You know, that kind of that look when they’re you know, when they’re away?
Bill Gasiamis 58:08
Yeah. When they look at you and it’s like, you’ve been on the internet again, Kristi.
Kristi Schiller 58:13
And you don’t catch dementia or you know, whatever it is that you know, it doesn’t happen that fast.
Bill Gasiamis 58:21
Apologies for the abrupt ending to the show. This interview was plagued by technological problems. And the internet connection was sketchy at best. It was our second attempt at recording, so we just called it a day at the end of the second loss of signal.
Bill Gasiamis 58:38
Now regardless of the ending, I do hope you enjoyed the show and I would really appreciate it if you could leave the show a review as it encourages search engines to rank the show higher in the search results making it possible for recent stroke survivors and their caregivers to find other people that have already been through what they are going through right now. And that might make their stroke recovery that little bit better. Thanks again for being here and see you on the next episode.
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