Surviving Guillain-Barre: A Mother's Story of Struggle and Triumph with Holly Frances

Transcript

WEBVTT

00:00:01.120 --> 00:00:04.251
And welcome back to another episode of Life Changing Challengers.

00:00:04.251 --> 00:00:09.131
This is going to be an epic episode, ladies and gentlemen.

00:00:09.131 --> 00:00:11.727
Today I have with me Holly Francis.

00:00:11.727 --> 00:00:20.913
She is an author and a speaker and a certified trainer, but her story is going to inspire you.

00:00:20.913 --> 00:00:25.592
It might, let's just put it this way it's going to be incredible.

00:00:25.592 --> 00:00:28.060
So how are you doing today, holly?

00:00:28.060 --> 00:00:28.783
Everything all right.

00:00:29.184 --> 00:00:30.067
I'm doing really good.

00:00:30.067 --> 00:00:31.792
Yeah, I'm in Edmonton Canada.

00:00:31.792 --> 00:00:39.659
Here it's finally really really beautiful out and sunny and summer is on its way, so I'm feeling great today.

00:00:40.581 --> 00:00:41.741
Oh, love Edmonton.

00:00:41.741 --> 00:01:06.481
I'm in Tampa, florida, so all the way down south of you, all the way across our country and yours, so, yeah, so Edmonton used to be the national the world championships for ITU triathlon, and that's what I do is I'm an endurance coach, coach, so you know what I mean.

00:01:06.481 --> 00:01:12.112
But you know that's the way that this has been brought out as ways of getting through adversity and trauma, and all that with uncommon ways.

00:01:12.112 --> 00:01:17.049
So that's how I've helped with a lot of my own clients, so that's how that came about.

00:01:17.049 --> 00:01:21.962
So, holly, this is the first question I give to everybody.

00:01:21.962 --> 00:01:25.748
Can you tell us a little bit about your childhood, where you grew up?

00:01:25.748 --> 00:01:28.974
What was a compliment of your family and what was the environment like?

00:01:29.599 --> 00:01:33.367
Yeah, so I grew up in a small town called Drayton Valley.

00:01:33.367 --> 00:01:38.706
It's about an hour and a half from Edmonton, I think like less than 8,000 people there.

00:01:38.706 --> 00:01:39.950
It's a very small town.

00:01:40.510 --> 00:01:43.501
My parents I come from a family of three kids.

00:01:43.501 --> 00:01:48.745
Youngest I was a baby, definitely a little spoiled at being the only girl in the family.

00:01:48.745 --> 00:01:52.787
Two older brothers my parents divorced, actually when I was about three years old.

00:01:52.787 --> 00:02:07.763
But I am blessed to have such amazing and supportive parents and they really instilled in us that we were still a family and we did a lot of activities still together and my family both parents were very involved.

00:02:07.763 --> 00:02:22.050
So, even though I come from a broken home, it didn't feel like that and I felt so supported and loved and I think because of that I grew up just with this attitude that I can do anything that I want because I had that support.

00:02:22.050 --> 00:02:31.073
So I attribute that to my parents and my childhood and having that positive upbringing to be able to always look at things very differently.

00:02:31.073 --> 00:02:32.201
Everything happens for a reason.

00:02:32.201 --> 00:02:40.371
That's how I see things and I think that has always helped me as I grew up and as I went through challenges as I got older.

00:02:41.819 --> 00:02:43.183
So did you go?

00:02:43.183 --> 00:02:46.211
So what was high school like for you in Edmonton?

00:02:46.733 --> 00:02:48.824
So I was in Drayton Valley still at the time.

00:02:48.824 --> 00:02:54.563
So Drayton Valley was it was a small town and I knew that a small town wasn't for me.

00:02:54.563 --> 00:02:58.621
I knew that I wanted to get out of there one day, but didn't really know what I wanted to do.

00:02:58.621 --> 00:02:59.802
High school was great.

00:02:59.802 --> 00:03:04.072
I had a lot of friends, I did a lot of activities and just kept really busy.

00:03:04.072 --> 00:03:11.320
I was very outgoing, very happy, very happy-go-lucky, just type of girl, but didn't really know what I wanted to do with my life.

00:03:11.521 --> 00:03:26.641
I moved to Edmonton when I was 18 years old, met my then husband at the time and proceeded to just go through the motions of okay, next is we get married and next we have babies, and just kind of had my whole life planned.

00:03:26.641 --> 00:03:33.123
It was just like this, this thing that I had set up for my life, and I knew what I wanted and I just went after it.

00:03:33.123 --> 00:03:44.543
I got into a career working in human resources and, yeah, I was just really excited once I got married and then had my daughter and I just felt like my whole life was kind of ahead of me.

00:03:44.543 --> 00:03:45.882
I was just really excited.

00:03:46.805 --> 00:03:47.164
All right.

00:03:47.164 --> 00:03:57.383
Well, I've seen it on your website and we're going to have that in the show notes, and I've seen what you've done and how you were before and, yeah, it looked like you were very happy growing up like that.

00:03:57.383 --> 00:04:01.133
So, ladies and gentlemen, we are just about to dive in.

00:04:01.133 --> 00:04:04.605
So you had a little girl and he was Casey, right?

00:04:04.605 --> 00:04:07.993
Yes, was it January of 2011?

00:04:08.379 --> 00:04:12.527
Yep, so Casey was born on January 26th of 2011.

00:04:12.527 --> 00:04:14.251
Obviously, my first child.

00:04:14.251 --> 00:04:15.372
It was so exciting.

00:04:15.372 --> 00:04:21.930
I had a wonderful pregnancy and we were just so excited for her to be born.

00:04:21.930 --> 00:04:29.228
She was the first baby on both sides of the family or the first grandbaby, yeah, so it was just such an exciting time.

00:04:29.588 --> 00:04:36.612
I was also kind of one of the first of my friend group to have a baby, so it was just all new and so exciting.

00:04:36.612 --> 00:04:44.983
And when I was growing up even though I came from a divorced family, I knew that I wanted a family so badly and I wanted kids and I wanted to be a mom.

00:04:44.983 --> 00:04:50.509
So when I had my daughter, it truly felt like everything was finally complete.

00:04:50.509 --> 00:04:52.793
It felt like I had everything that I'd wanted.

00:04:52.793 --> 00:04:58.930
My daughter was born, she was 100% healthy and I just felt so blessed and so happy.

00:04:58.930 --> 00:05:12.120
And I remember during those first few weeks being in awe of how perfect everything was going, and I remember almost feeling like guilty, like oh, this is how life is, is this how perfect life is?

00:05:12.120 --> 00:05:18.754
And I had no idea that just a few weeks later my life would drastically change forever.

00:05:20.300 --> 00:05:30.108
So you came down with Guillain-Barre syndrome, correct, which is an autoimmune that actually attacks the nervous system.

00:05:30.108 --> 00:05:32.072
Correct, correct, all right.

00:05:32.072 --> 00:05:35.129
So, before we get into the thick of that, where did you start?

00:05:35.129 --> 00:05:38.882
What did you start feeling and how did you start Like?

00:05:38.882 --> 00:05:40.627
Where did the symptoms originate?

00:05:41.401 --> 00:05:57.812
So I was at home, casey would have been three weeks old and I was still adjusting to life as a new mom and I was breastfeeding and no people were coming over because my house was a mess and I was like up all night and exhausted and loving every minute of it, but exhausted.

00:05:57.812 --> 00:05:59.286
I remember that day.

00:05:59.286 --> 00:06:06.591
I remember sitting on the couch and I had Casey in my arms and I felt like this kind of tingle in my fingertip.

00:06:06.591 --> 00:06:11.913
That was the very first symptom and at the time I obviously didn't realize that till months later.

00:06:11.913 --> 00:06:15.572
But looking back now I know that was my first symptom.

00:06:15.572 --> 00:06:25.163
So this was around actually noon and I remember thinking that's really weird, like I've got this weird tingle in my finger, and I thought maybe I had burned myself because it was kind of like numb.

00:06:25.163 --> 00:06:32.262
But I didn't recall burning myself on anything, so I just kind of ignored it and went about my day.

00:06:32.262 --> 00:06:50.884
About probably about four hours later I was walking up the stairs and I remember feeling really tired and drained and thinking like, oh, it's a little bit harder to lift my legs to get up these stairs today and that's kind of a weird feeling.

00:06:50.884 --> 00:06:51.928
But again I was thinking you know what?

00:06:51.928 --> 00:06:52.391
You haven't slept much.

00:06:52.391 --> 00:06:52.872
You're a brand new mom.

00:06:52.892 --> 00:06:59.793
I did have a C-section with my daughter, so I was recovering from surgery, and so it was like, okay, no, this is fine, you'll be fine, you're just tired.

00:06:59.793 --> 00:07:05.761
So I just ignored it.

00:07:05.761 --> 00:07:16.848
I got this pain in my neck and this was within like an hour of the kind of weakness happening and the pain kind of started as pretty mild and then within minutes like I'm talking like 5, 10, 15 minutes it went from mild to severe.

00:07:16.848 --> 00:07:20.581
So I took some Advil and I'm like what the heck did I do?

00:07:20.581 --> 00:07:26.944
Did I pinch a nerve or something Like I just don't get what I did all of a sudden, like it just came on so suddenly.

00:07:26.944 --> 00:07:36.310
And of course, after like an hour the pain was still there, even though I had taken like two, three Advils was not helping at all.

00:07:36.310 --> 00:07:38.100
It just seemed to be getting worse.

00:07:38.100 --> 00:07:39.584
But I just tried to ignore it.

00:07:41.107 --> 00:07:47.043
Eventually, you know, it was bedtime and I was like, hey, I'm going to put Casey to bed and I'm going to go to sleep.

00:07:47.043 --> 00:07:53.415
I'm going to try to get a good night's sleep, because I'm just not feeling well, like I'm just feeling kind of weak and tired.

00:07:53.415 --> 00:08:01.213
So I went to bed that night I tucked Casey in her little bassinet beside my bed and I lay down and I cannot sleep.

00:08:01.213 --> 00:08:06.341
There's no way I could sleep.

00:08:06.362 --> 00:08:07.244
I'm in so much pain from my neck.

00:08:07.244 --> 00:08:07.605
So I'm online.

00:08:07.605 --> 00:08:11.012
Of course, this is like when Google first came out on our smartphones, right?

00:08:11.012 --> 00:08:13.766
And so I'm Googling things online.

00:08:13.766 --> 00:08:16.531
And I'm on WebMD, like do I have a pinched nerve?

00:08:16.531 --> 00:08:19.682
Why is my neck hurting so bad and why are my legs weak?

00:08:19.682 --> 00:08:22.423
And it says, yes, you have a pinched nerve.

00:08:22.423 --> 00:08:23.184
That's what it said.

00:08:23.184 --> 00:08:26.946
So I'm like okay, what can I do to alleviate this pain?

00:08:26.946 --> 00:08:28.466
So it's telling me all these stretches.

00:08:28.507 --> 00:08:33.431
So I get out of bed and I'm doing all these different neck stretches and yoga poses.

00:08:33.431 --> 00:08:42.856
None of it is helping, to the point where I'm in tears and I'm literally crying and I'm thinking like I can't do this and I don't want to wake up my husband.

00:08:42.856 --> 00:08:43.817
He was sleeping.

00:08:43.817 --> 00:08:54.996
He had to be at work the next day, that was his first day back after being on paternity leave, and so I was trying not to wake him up and I was trying to just do my own thing and deal with it myself.

00:08:54.996 --> 00:08:58.326
But it got too unbearable and he woke up.

00:08:58.405 --> 00:09:11.740
And then Casey actually woke up because she needed to nurse and I said I'll get her.

00:09:11.780 --> 00:09:14.250
I'll get her and I stood up from the floor and when I stood up my legs actually gave out on me and I fell to the floor.

00:09:14.250 --> 00:09:20.985
That was the first sign of the paralysis starting to spread up my body and of course at the time I didn't know that I'm thinking wow, this is a pretty bad pinched nerve.

00:09:20.985 --> 00:09:26.313
I think I need to go to the hospital or see a doctor immediately.

00:09:26.313 --> 00:09:29.767
So I had my husband drop me off.

00:09:29.767 --> 00:09:32.331
I said you know, I don't want Casey coming in with me.

00:09:32.331 --> 00:09:34.003
I don't want you guys to wait with me.

00:09:34.003 --> 00:09:35.366
I'm sure I'll be fine.

00:09:35.366 --> 00:09:39.621
I'm sure that they're just going to give me some medicine and you can pick me up in a few hours.

00:09:39.621 --> 00:09:58.197
So he dropped me off and I kind of just barely so he dropped me off and I kind of just barely walked through the doors my legs were so weak by that point and I was able to see a doctor and I had no idea that that was actually the last time that I would step foot outside for over three months.

00:09:59.840 --> 00:10:07.985
Wow, oh my God, I just, you know, I researched a little bit of Guillain-Barre and it didn't.

00:10:07.985 --> 00:10:13.850
I didn't get a progression, they didn't give me a timeline, but the fact that it was what?

00:10:13.850 --> 00:10:22.856
12 hours from the time that you felt this little tingle, to the point where your legs are buckling and you're falling down in the hospital.

00:10:23.277 --> 00:10:25.841
Yeah, and that was it.

00:10:25.841 --> 00:10:32.731
Yeah, it was wild, it came on very quickly and Guillain-Barre syndrome is very different for every person.

00:10:32.731 --> 00:10:39.605
It's a wild disorder and it does affect everyone very differently and some cases are mild.

00:10:39.605 --> 00:10:45.870
Some people they get paralysis only up to their waist or they'll only get it in their arms.

00:10:45.870 --> 00:10:49.129
Some people are in the hospital for a very long time.

00:10:49.129 --> 00:10:50.706
Some people are in the hospital for a day.

00:10:50.706 --> 00:10:52.198
Some people are there for a few weeks.

00:10:52.198 --> 00:10:57.253
So there's just kind of no progression that the doctors can really say.

00:10:57.253 --> 00:10:59.268
There's no way to predict how it's going to be.

00:10:59.268 --> 00:11:02.950
So, basically, what happened is I went in to see a doctor.

00:11:02.950 --> 00:11:09.366
I was very fortunate that the doctor that I saw recognized Well, to be honest, he actually didn't recognize.

00:11:09.366 --> 00:11:14.908
He said I don't know what this is, but it's something serious and I'm going to get a neurologist to come see you.

00:11:14.908 --> 00:11:20.212
So I was grateful that he said you know, I don't know what this is, but someone else will.

00:11:20.932 --> 00:11:23.193
The second doctor that came to see me, the neurologist.

00:11:23.193 --> 00:11:37.423
He had seen a case of Guillain-Barre syndrome before, which made it very helpful for diagnosing me, obviously Because it's such a rare disease I mean it only affects about one to two out of every hundred thousand and doctors don't see it very often.

00:11:37.423 --> 00:11:40.311
So a lot of people get misdiagnosed.

00:11:40.311 --> 00:11:45.807
They get sent home because maybe it's not coming on as seriously or as quickly.

00:11:45.807 --> 00:11:52.032
In my case it was progressing so quickly that they were able to see it happening right in front of their eyes.

00:11:52.032 --> 00:12:01.451
They would test my strength, they would test my hand strength and my leg strength and they could literally see it getting worse and worse as like half hour hour went by.

00:12:01.451 --> 00:12:05.570
And he said you know, I think you have Guillain-Barre syndrome.

00:12:05.831 --> 00:12:08.647
And I remember at the time going what, what is that?

00:12:08.647 --> 00:12:10.250
I don't know what that is.

00:12:10.250 --> 00:12:11.100
I've never heard of that.

00:12:11.100 --> 00:12:12.023
It's like that's.

00:12:12.023 --> 00:12:13.065
Is that a disease?

00:12:13.065 --> 00:12:14.609
Is it like like?

00:12:14.609 --> 00:12:16.192
Is it similar to cancer?

00:12:16.192 --> 00:12:16.393
Like?

00:12:16.393 --> 00:12:18.744
That was just where my first mind went to.

00:12:19.485 --> 00:12:23.513
Then he told me you know, it's this rare autoimmune disorder and we don't know what's going to happen.

00:12:23.513 --> 00:12:29.044
It can be mild or severe, but we're going to need to monitor you and you're going to need to be admitted into the hospital.

00:12:29.044 --> 00:12:32.038
And I remember thinking I can't be admitted.

00:12:32.038 --> 00:12:33.000
I have a baby at home.

00:12:33.000 --> 00:12:35.684
I got to go back home, just give me the meds and I'm going to go home.

00:12:35.684 --> 00:12:42.855
And they were like no, this is very serious and we need you to be admitted and we'll see how things go.

00:12:42.855 --> 00:12:43.998
You need to call your family.

00:12:43.998 --> 00:12:47.586
You tell your husband to come here and you can bring your daughter here.

00:12:48.350 --> 00:12:52.123
And I remember thinking this must be more serious than I think it is.

00:12:52.123 --> 00:13:02.990
But I still just kind of tried to brush it off and think I'm going to be okay, I'm going to be fine, I'm at the hospital, that's what you do at the hospital, I'm in the right place, they're going to get me better and then I'm going to go home.

00:13:02.990 --> 00:13:05.533
I remember asking how long am I going to be here?

00:13:05.533 --> 00:13:07.676
And they said we can't tell you that we don't know.

00:13:07.676 --> 00:13:09.383
Let's just see what happens.

00:13:09.383 --> 00:13:29.186
Unfortunately, the paralysis spread so quickly that within 72 hours of that very first tingle basically a day and a half of being at the hospital the paralysis spread all the way up my body, affected my legs, arms and up until it affected my breathing.

00:13:29.186 --> 00:13:33.354
So I was put on life support in ICU after 72 hours.

00:13:34.360 --> 00:13:37.975
Wow, so you actually had paralysis of the airway?

00:13:37.975 --> 00:13:39.039
I did, yeah.

00:13:39.039 --> 00:13:40.364
But, you had to get ventilated.

00:13:40.364 --> 00:13:46.567
Because that's incredible, because I'm sure now that you've also probably lived through COVID, you know that was a big thing.

00:13:46.567 --> 00:13:52.285
Right A month later you might not come off and at this point at least we didn't have that scare.

00:13:52.285 --> 00:13:57.024
But wow, I mean, that's incredible, what I'm gonna let you tell us.

00:13:57.024 --> 00:13:59.796
But what was the actual feeling?

00:13:59.796 --> 00:14:02.101
What were you feeling through your body as this was going on?

00:14:02.101 --> 00:14:04.424
Was it nothing, or was it like just pure pain?

00:14:04.865 --> 00:14:05.807
It was pure pain.

00:14:05.807 --> 00:14:10.615
So with Guillain-Barre syndrome it's affecting the nervous system.

00:14:10.615 --> 00:14:16.390
So GBS is basically it sees an attack on your body and that can be anything.

00:14:16.390 --> 00:14:24.471
It could be the flu, it could be a cold, it could be surgery, it could be childbirth, and so for my case, I had just given birth.

00:14:24.471 --> 00:14:26.922
Three weeks earlier I also had a C-section.

00:14:26.922 --> 00:14:29.287
Those are known triggers for GBS.

00:14:29.687 --> 00:14:36.889
Gbs usually comes on two to four weeks after some sort of trigger, so that's kind of what they attribute it to be.

00:14:36.889 --> 00:14:46.563
And then from there what happens is, you know, normally, in a normal body, in a healthy body, your immune system attacks whatever that trigger is, bites it off, and then your body gets better.

00:14:46.563 --> 00:14:58.423
Right With GBS, it continues to attack and then it begins to attack the nervous system and what it does is causes weakness, tingling, pain and then paralysis, or potentially paralysis in my case.

00:14:58.423 --> 00:15:06.975
So it was like inflammation, basically, of every nerve in the body and it felt like my body was on fire.

00:15:06.975 --> 00:15:11.989
It felt like I had been run over by a vehicle, fallen off a building.

00:15:11.989 --> 00:15:13.491
It was unbearable.

00:15:13.491 --> 00:15:16.984
I was on extreme amounts of narcotics.

00:15:16.984 --> 00:15:23.211
I was so out of it but also very aware of my surroundings.

00:15:23.292 --> 00:15:25.455
So, although I was heavily sedated.

00:15:25.455 --> 00:15:31.331
I was still awake and still knowing what was going on, still in excruciating pain.

00:15:31.331 --> 00:15:33.543
All of a sudden, you know I'm rushed to ICU.

00:15:33.543 --> 00:15:38.721
They're saying we're going to give you some treatment, we're going to put a breathing tube in your mouth.

00:15:38.721 --> 00:15:40.065
You're not going to be able to speak.

00:15:40.065 --> 00:15:46.254
I wake up and I have this tube down my mouth and I can't communicate.

00:15:46.254 --> 00:15:48.265
I can no longer move my body.

00:15:48.265 --> 00:15:49.450
I'm in ICU.

00:15:49.450 --> 00:15:59.529
My entire family, friends, family from out of town obviously is rushed to be by my side and at that point it was like this is it?

00:15:59.529 --> 00:16:02.168
I'm not getting out of here, I'm dying.

00:16:02.168 --> 00:16:04.927
That's what I had come to the conclusion.

00:16:04.927 --> 00:16:06.995
I'm on life support and this is kind of it And'm dying.

00:16:06.995 --> 00:16:08.038
That's what I had come to the conclusion.

00:16:08.097 --> 00:16:12.446
I'm on life support and this is kind of it, and everyone is just here to say goodbye, oh my God.

00:16:12.446 --> 00:16:16.333
So you had mentioned that you were in an immense amount of pain and I can imagine.

00:16:16.333 --> 00:16:20.660
I mean, you're actually.

00:16:20.660 --> 00:16:24.308
You're talking about a virus that's literally attacking the nervous system, so every single nerve ending is on fire and it's firing.

00:16:24.308 --> 00:16:26.740
Did the narcotics did?

00:16:26.740 --> 00:16:28.826
Did they help at all?

00:16:28.826 --> 00:16:31.471
Do you think they dulled it a little bit?

00:16:31.471 --> 00:16:31.932
What did it?

00:16:31.932 --> 00:16:48.885
What did it feel like when you started to, when I'm sure I'm picturing this in my head, but I'm thinking that you, you you'd have a nurse that come in and they'd push them more, because obviously you know, here would they give us this little button and you ask more if you, whenever you want, but you don't have any control, so they got to do it for you.

00:16:49.346 --> 00:16:56.341
Yeah, so we I mean, I went through so much pain for so long I had to actually have a pain specialist come in, somebody.

00:16:56.341 --> 00:16:57.846
I didn't even know that existed.

00:16:57.846 --> 00:17:02.746
But yeah, there is a person called a pain specialist that specializes in trying to help your pain.

00:17:02.746 --> 00:17:17.590
So I'm, yeah, I mean in ICU and I'm I had a nurse by my side almost all the time I here in Canada you know ICU it's I very, very, very fortunate to have the care that I did and the nurse was was amazing.

00:17:17.590 --> 00:17:23.647
So I had a 12 hour nurse at a time and they basically very rarely left my side.

00:17:23.647 --> 00:17:40.188
So we had pain meds, you know, on a regular rotation, and then I was allowed a top up of a kind of an additional dilaudid, it was called and I was allowed that every hour Wow, every hour.

00:17:41.280 --> 00:17:44.931
And it did help for about five minutes.

00:17:47.305 --> 00:17:47.546
Oh no.

00:17:47.546 --> 00:17:49.391
So that was that's where I was trying to get to.

00:17:49.391 --> 00:18:00.053
I wanted I want people to understand that you're in the most immense pain possible and I wanted to hear you say that, ok, when they press the button and they got the top up, it was like you got a little bit of relief.

00:18:00.361 --> 00:18:06.701
I got it lasted five minutes, five minutes, and I would, I remember I would look up at the clock on the wall.

00:18:06.701 --> 00:18:12.984
It was like this you know the school, the clocks that you'd have they have at school, exact same right Reminded me of my childhood.

00:18:12.984 --> 00:18:31.434
And looking at the clock when you're little at that, when school's out, and I would look at the clock and I would say, oh, I have 55 minutes until I can get another dose and I would just count down five minutes until I can get another toast and I would just count down Wow, Wow, I mean that's, that is nuts, so okay.

00:18:31.494 --> 00:18:33.955
So I come from a little bit of a healthcare field.

00:18:33.955 --> 00:18:45.057
I was an EMT at one point and I still work in healthcare, but I'm on the tech side Cause at this point I would be thinking epidural, you know, just shut it down.

00:18:45.057 --> 00:18:46.119
But did?

00:18:46.119 --> 00:18:47.000
Did they try that?

00:18:47.000 --> 00:19:01.397
No, that was not something that was amicable with your diagnosis.

00:19:01.397 --> 00:19:02.759
Okay, that's cool.

00:19:02.759 --> 00:19:04.541
That's the first thing that came to my mind.

00:19:05.325 --> 00:19:17.286
Yeah, we did something subcutaneous is what they eventually did so where I got medication through kind of the fatty parts of my stomach and that was able to help.

00:19:18.328 --> 00:19:26.393
So that would kind of yeah, that would, that would kind of de-stimulate the nerve endings and at least give you a little bit of oh wow.

00:19:26.393 --> 00:19:34.493
So during this time you're I'm I'm assuming you're you're getting family, regular family, coming in.

00:19:34.493 --> 00:19:37.608
What was going on with your mom and your dad at this point?

00:19:38.691 --> 00:19:49.046
So they're there and they are talking to the doctors and they're learning everything they can about GBS and this disease that none of us have ever heard of before.

00:19:49.046 --> 00:19:58.805
I'm 26 years old, so I mean, I'm young and I had my whole life ahead of me, and so this was just so sudden and so unexpected.

00:19:58.805 --> 00:20:13.059
But the doctors were telling my family that you know, guillain-barre syndrome can be very severe, but the good news is is that almost everybody gets out of ICU eventually and recovers and gets back to their life.

00:20:13.059 --> 00:20:18.586
It's just going to take some time and you just have to be patient and you just have to hold on to hope and you just have to keep fighting.

00:20:18.586 --> 00:20:28.135
And so they did, and they held on to that hope and they were very positive and upbeat and said you know you're going to get through this, because that's what the doctors were telling us.

00:20:29.204 --> 00:20:39.752
Me, on the other hand, I mean, I'm in ICU, I'm on a breathing tube, I'm not seeing any signs of improvement for days and days and then weeks and weeks.

00:20:39.752 --> 00:20:45.836
So for me it was very challenging to believe that you know I am going to get out of there.

00:20:45.836 --> 00:20:54.022
Sometimes I thought they were lying to me, that they were just, you know, maybe just trying to keep me alive because they weren't ready to let me go.

00:20:54.022 --> 00:20:59.032
I just felt like they weren't telling me the truth.

00:20:59.032 --> 00:21:01.818
I thought I was going to die at any minute.

00:21:01.818 --> 00:21:03.729
The breathing tube was.

00:21:03.729 --> 00:21:07.884
Picture yourself underwater when you're just about to run out of air.

00:21:07.884 --> 00:21:11.351
That feeling, that's what it was like at all times of the day.

00:21:11.351 --> 00:21:17.059
So I was so afraid to, because I could still move my head.

00:21:17.059 --> 00:21:18.791
My head was the one thing that I could move.

00:21:18.791 --> 00:21:32.829
But I was afraid to move my head because I was afraid that if I even moved, it would just cause the breathing tube to move and then it would kind of vibrate in my throat and I could feel it and it would cause severe anxiety.

00:21:33.873 --> 00:21:35.006
And then, of course, my daughter.

00:21:35.006 --> 00:21:37.074
She's there every day with me.

00:21:37.074 --> 00:21:49.173
I was so grateful that they said you know, it's very important that she be here with you, and they would put her on my chest and they would have her in a bassinet right beside me, which was amazing.

00:21:49.173 --> 00:22:02.132
It was so awesome that I could have her there, but at the same time it was so devastating because it was this reminder of you know, this is what I have and this is what I had at home.

00:22:02.132 --> 00:22:07.115
And now here I am and I had wanted to be a mom my whole life.

00:22:07.496 --> 00:22:16.882
And then here I am and my daughter's three weeks old, and now I'm dying is what I felt like, and I felt so robbed of my future.

00:22:16.882 --> 00:22:39.695
I felt so just heartbroken that, you know, everything that I wanted was just taken away from me and there was no future, there was no hope, there was no reason to keep fighting, and so for a very long time I just laid there, you know, with no hope in my eyes, and I remember my family just tried to do everything they could to try and cheer me up.

00:22:39.695 --> 00:22:43.054
And it's so hard when you're dealing with pain.

00:22:43.054 --> 00:22:49.095
And I was also very ill from all the medication I was on, so I was vomiting up to like 20, 30 times a day.

00:22:49.095 --> 00:22:50.028
So it was just.

00:22:50.028 --> 00:22:56.055
It was pure hell in ICU and I had no idea how I was going to get through it.

00:22:57.105 --> 00:22:58.228
So I am.

00:22:58.228 --> 00:23:09.156
I'm going to assume the best part of your day in those days which you know, obviously there wasn't a lot of them was when your husband or your parents would bring Casey in.

00:23:09.597 --> 00:23:09.798
Yes.

00:23:11.147 --> 00:23:11.368
Is it.

00:23:11.368 --> 00:23:12.393
Would that be fair to say?

00:23:26.096 --> 00:23:26.596
Yes, absolutely.

00:23:26.596 --> 00:23:28.818
And I remember like I was just so proud of her yes, would that be fair to say?

00:23:28.818 --> 00:23:33.963
Hear all the nurses going oh, casey's here, oh my gosh, she's so cute.

00:23:33.963 --> 00:23:37.351
And I remember just being so proud and being like, yep, that's my little girl.

00:23:37.351 --> 00:23:39.415
She was just an angel.

00:23:39.415 --> 00:23:40.258
She truly was.

00:23:40.944 --> 00:23:44.314
It was like she knew that she needed to be on her best behavior.

00:23:44.314 --> 00:23:47.188
She was just amazing from day one.

00:23:47.188 --> 00:24:04.128
She slept really well and she never cried and my family would just do all these little fun things to try to get her to smile, to get her to laugh, and she just was kind of this light in a very, very dark period of time.

00:24:04.128 --> 00:24:07.075
But there was also a lot of pain there too.

00:24:07.075 --> 00:24:12.314
You know they would put her on my bed and they would say you know, you need to cuddle with Casey.

00:24:12.314 --> 00:24:14.157
Of course I couldn't cuddle her back.

00:24:14.157 --> 00:24:26.617
She would reach out, she would try to wrap her finger around mine and I couldn't feel it and I couldn't reach out to her, and so it was also very, very depressing and kind of heartbreaking.

00:24:26.617 --> 00:24:27.626
You know to go.

00:24:27.626 --> 00:24:29.829
You know I'm her mom and I can't do anything.

00:24:29.829 --> 00:24:34.939
I can't hold her, I can't feed her, I can't be the mom that she deserves.

00:24:34.939 --> 00:24:43.772
And a lot of times I would say, you know, I don't want her on my bed because I want her to be held by somebody else who can actually take care of her.

00:24:43.792 --> 00:24:51.554
So it was a very, very depressing time, very dark time, but thankfully I was able to get in touch.

00:24:51.554 --> 00:24:53.698
Well, not myself, but the nurses, you know.

00:24:53.698 --> 00:24:59.125
They saw me at my at my worst.

00:24:59.125 --> 00:24:59.748
They saw me losing hope.

00:24:59.748 --> 00:25:03.499
They kept telling me you're going to get better, you're going to get better, and I just would shake my head and go no, I'm not, I'm not getting better.

00:25:03.499 --> 00:25:15.948
And so they reached out to a previous GBS survivor that they had actually cared for a few years before and, crazy enough, he was actually in the same ICU room, that I was in the exact same one.

00:25:15.948 --> 00:25:17.069
Oh wow.

00:25:17.069 --> 00:25:20.678
And so they had cared for him and he had recovered.

00:25:20.678 --> 00:25:27.459
So they said you know this woman, holly, she's in ICU, she could really use some motivation.

00:25:28.345 --> 00:25:34.898
So he walked into the hospital room and he brought his family with him as well, and he had three young daughters.

00:25:34.898 --> 00:25:39.317
They were all, I think, under the age of four when he was diagnosed.

00:25:39.317 --> 00:25:56.015
And he walked right up to my bed and said you know, I have been where you've been and I am here now and I recovered and I made it back to my family and you're going to too and that was a huge, huge turning point for me.

00:25:56.015 --> 00:26:04.713
That was like, okay, there is someone else out here out there that's been through what I have been through and they got out of it.

00:26:04.713 --> 00:26:07.373
He was a very young dad.

00:26:07.373 --> 00:26:15.960
He got back to his daughters Maybe I can too, just maybe and so that was just like this glimmer of hope that you know okay, maybe I can too, just maybe, and so that was just like this glimmer of hope that you know, okay, maybe I can do this.

00:26:17.101 --> 00:26:17.421
Awesome.

00:26:17.421 --> 00:26:21.048
So that was the, that was the start, that was your turning point.

00:26:21.048 --> 00:26:30.596
Before we make that turn and we round that corner, can you give us and we know a lot of it, is you just literally being there in pain?

00:26:30.596 --> 00:26:37.247
Can you give us like literally being there in pain?

00:26:37.247 --> 00:26:39.732
Can you give us like a typical day of those first few of those, of that you know the?

00:26:39.853 --> 00:26:42.700
first few weeks, first couple months, for sure, it was a groundhog day.

00:26:42.700 --> 00:26:44.226
Every day was the same.

00:26:44.226 --> 00:26:49.673
So I would wake up and I remember immediately waking up you.

00:26:49.673 --> 00:26:51.636
You know, instant anxiety.

00:26:51.636 --> 00:26:54.300
Oh, I'm still here.

00:26:54.300 --> 00:27:02.678
I remember I would dream about living my normal life at home, and then I would wake up and I'd be like, nope, I'm living a nightmare.

00:27:02.678 --> 00:27:07.211
So it was instant, instant pain, instant anxiety.

00:27:07.813 --> 00:27:13.549
I would always ask my mom oh yeah, by the way, also at this point, you know, I was on a ventilator with a breathing tube.

00:27:13.549 --> 00:27:19.125
After about 10 days they said you know, this needs to come out, we need to give you a trach.

00:27:19.125 --> 00:27:24.675
So they put a hole in my throat and I was given a tracheotomy.

00:27:24.675 --> 00:27:30.213
So from here I was able to mouth words and we had a communication board.

00:27:30.213 --> 00:27:33.349
Basically it was like this eight by 10 piece of paper.

00:27:33.349 --> 00:28:01.627
Everyone just wrote down letters and eventually they wrote down words that I would commonly use and they would point to them, and then I would either blink my eyes or nod my head, depending on how much energy I had, and so I would mouth things, and that's how I communicated with my family, and the first thing I would always ask is who's my nurse and the reason I would ask that is because so many of the nurses you know it's ICU, they're dealing with a lot of very traumatic experiences.

00:28:01.627 --> 00:28:13.657
A lot of you know there was a lot of car accidents, there was a lot of very severe elderly people, a lot of people that were sedated or in comas With Guillain-Barre syndrome.

00:28:13.678 --> 00:28:21.078
You know, people are awake and aware, and there for a long time and they didn't necessarily know how to care for me.

00:28:21.078 --> 00:28:22.548
They didn't know how to handle the pain.

00:28:22.548 --> 00:28:24.535
They didn't know, they didn't realize that I was.

00:28:24.535 --> 00:28:26.507
I literally felt like I was on fire.

00:28:26.507 --> 00:28:32.095
I was so hot that I couldn't have blankets on me, that I couldn't have blankets on me.

00:28:32.095 --> 00:28:36.200
The blankets basically felt like they were suffocating me.

00:28:36.200 --> 00:28:46.130
They made me feel too hot, they made me in pain, they made me itchy, just everything.

00:28:46.130 --> 00:28:47.134
So I would basically be there just laying there.

00:28:47.134 --> 00:28:54.750
I would have 15 different cold cloths all over parts of my body because I just felt like I was on fire and that was the inflammation in my nerves.

00:28:55.872 --> 00:29:09.130
And then I'm nauseous and I'm dealing with a lot of pain and just asking you know, I want a nurse that has dealt with me before, because whenever I had a nurse that had been in my room before.

00:29:09.130 --> 00:29:16.376
You know, they were a lot more understanding, a little bit more comforting, and so that was always my first question whenever I woke up who's my nurse?

00:29:16.376 --> 00:29:23.654
And you know, some of them were absolutely incredible, even if they didn't have experience with GBS.

00:29:23.654 --> 00:29:29.174
You know, some people are just destined to be nurses and they're just incredible at what they do.

00:29:29.174 --> 00:29:34.717
And they would, you know, hold my hand and they would get me my pain meds, and they would.

00:29:34.717 --> 00:29:37.471
They would try to lift my spirit Some days.

00:29:37.471 --> 00:29:50.059
They would do my makeup and they would like try to brush out my hair, and they would just do all these little things, and so we would try to just pass the time, and that's so hard when you're in ICU and you can't do anything.

00:29:50.059 --> 00:29:53.570
So, you know, my mom tried to get us into a routine.

00:29:53.570 --> 00:29:57.752
She would brush my teeth every morning, she would wash my face.

00:29:57.752 --> 00:30:04.974
I would get a sponge bath from the nurses, which is basically like a cloth that they would just wipe me down.

00:30:04.974 --> 00:30:10.294
That was my highlight of the day, because it actually cooled me down and made me feel a little bit better.

00:30:10.957 --> 00:30:13.930
I would get my you know, my narcotic injection, and it would help in that moment.

00:30:13.930 --> 00:30:14.135
So I would kind of feel all right bit better.

00:30:14.135 --> 00:30:15.333
I would get my you know my narcotic injection and it would help in that moment.

00:30:15.333 --> 00:30:15.773
So I would.

00:30:15.773 --> 00:30:37.039
I would kind of feel all right for for, like I said, like an hour and then from there, usually after all my meds, I would get like 15, 20 different pills that would be basically chopped up into a liquid format and then squeezed into a feeding tube in my stomach.

00:30:37.039 --> 00:30:43.255
So that's how I fed and it made me extremely, extremely nauseous.

00:30:43.255 --> 00:30:52.855
So from there that's usually when I would get sick they would actually lift me out of bed once a day.

00:30:53.935 --> 00:30:58.846
That didn't happen until probably three weeks in or a month, almost a month in, I think.

00:30:58.846 --> 00:31:05.108
But you know, when you're lying down your heart is resting on your lungs and so it's putting pressure.

00:31:05.108 --> 00:31:08.016
So my lung was actually collapsing.

00:31:08.016 --> 00:31:10.007
So they said you know, she's got to get out of bed.

00:31:10.007 --> 00:31:26.835
So they had had this hoist that would lift my body up into the air and move me over into this big lazy boy chair and it was the most excruciating painful thing, just having everything touch me and move me and I would be hyperventilating.

00:31:26.835 --> 00:31:36.009
And they got me on Ativan and I would get in the chair and I would be like, okay, I just want to get out of this room, I just want to go do something else.

00:31:36.369 --> 00:31:39.076
So they would actually take me through the hospital halls.

00:31:39.076 --> 00:31:41.388
Sometimes they would take me outside.

00:31:41.388 --> 00:31:49.015
I would sit outside and I would spend 10 minutes outside and I would go yeah, no, I don't want to be here, I just want to go back to my room.

00:31:49.015 --> 00:31:56.307
Because I'd be in so much pain, I'd be in so much discomfort on my back, there'd be people walking in and out of the hospital.

00:31:56.307 --> 00:31:57.912
They would do a double take of me.

00:31:57.912 --> 00:32:09.628
I literally looked like I was dying and I often had my newborn baby on my lap, because my family's trying to give me that connection, and people would just stare at me.

00:32:09.628 --> 00:32:13.178
And so I would just be like, no, just bring me back to my room.

00:32:13.178 --> 00:32:14.866
And I would go back to the room and go.

00:32:14.866 --> 00:32:17.113
I can't believe I want to be back here, but I do.

00:32:17.113 --> 00:32:19.096
And then I'd be in bed and go.

00:32:19.096 --> 00:32:22.933
I just want to get out of here yeah and it was just, it was just so.

00:32:22.974 --> 00:32:24.176
Torture, yeah, and it was just.

00:32:24.176 --> 00:32:29.979
We'd watch tv and my mom would read me messages that people would reach out to me.

00:32:29.979 --> 00:32:38.230
Um, in my city, you know, I was in my 20s and I had a newborn and that's a very devastating, heartbreaking story.

00:32:38.230 --> 00:32:44.452
So it made the news and there was a lot of people reaching out to me and a lot of even strangers.

00:32:44.452 --> 00:32:52.835
You know people that had gone through GBS before reaching out, messaging my family, even stopping by the hospital to try to see me.

00:32:52.835 --> 00:33:03.747
Yeah, it was quite wild but it was very motivating to feel, you know, that love and that support of people all over just rooting for me.

00:33:03.747 --> 00:33:06.357
And my mom would read me these messages and go.

00:33:06.357 --> 00:33:22.032
You know there's so many people fighting alongside with you and you know you're not alone and you may not feel strong, uh, but we're here, we're your strength right now, while you have none oh man.

00:33:23.296 --> 00:33:30.390
So when, how long was it before you finally started to see a light?

00:33:30.390 --> 00:33:31.511
You know where?

00:33:31.511 --> 00:33:37.333
When did things start to finally calm down to where you started feeling like whoa, hang on a second, something's a little bit better.

00:33:38.684 --> 00:33:49.795
So, to be honest, that happened about six weeks in my fingertip moved, so that was the first movement that came back, which is very fascinating, that that was that first symptom.

00:33:49.795 --> 00:33:55.617
And then that's where it first came back Same finger and my family was ecstatic.

00:33:55.617 --> 00:34:00.317
They were like, oh my God, this is the sign, this is it, you're going to get better.

00:34:00.317 --> 00:34:09.887
But in that moment I was literally vomiting and in so much pain and crying that it was hard to get excited over a fingertip moving.

00:34:09.887 --> 00:34:12.554
So I wouldn't say that.

00:34:12.554 --> 00:34:14.838
You know, that was the pivotal moment for me.

00:34:14.838 --> 00:34:18.773
It was certainly for my family, that was a sign that I was getting better.

00:34:18.773 --> 00:34:24.550
It wasn't for me, though, but as time went on, I did get better.

00:34:24.550 --> 00:34:53.251
I didn't always, I wasn't always able to see that, but I was, and you know I wrote about it in my book, where I talk about the progression that I went through, and when I go through that I'm able to say like, wow, every day I did show signs of improvement in some way, but for me, I would say it was probably almost two months before I really started to believe that.

00:34:53.251 --> 00:34:54.606
You know, maybe I'm going to get out of here.

00:34:55.407 --> 00:34:57.152
So when you're on a breathing tube.

00:34:57.152 --> 00:35:06.958
You know you're on a ventilator, you're surviving because of that machine and so, no matter what, even though I'm paralyzed, I can't do anything.

00:35:06.958 --> 00:35:08.007
I can't move my body.

00:35:08.007 --> 00:35:10.811
Priority number one is my breathing.

00:35:10.811 --> 00:35:14.985
And so they said you can't get out of ICU until you get off the ventilator.

00:35:14.985 --> 00:35:25.637
So you have to do these trials off the ventilator and you're going to do them for 15, 30 seconds at a time and gradually we're going to wean you off the ventilator.

00:35:25.637 --> 00:35:30.476
So you know, the priority number one is let's deal with that.

00:35:30.476 --> 00:35:37.710
So every day we would start doing those and I remember the first time that I did it, I truly felt like I was going to die.

00:35:37.731 --> 00:35:46.074
I was running out of air, I was hyperventilating, I was panicking, I'm crying and I'm going, I can't do this, put me back on.

00:35:46.074 --> 00:35:51.170
So they put me back on and they said, okay, you lost 15 seconds.

00:35:51.170 --> 00:35:58.230
And I remember going 15 seconds like how am I going to last a day?

00:35:58.230 --> 00:35:59.413
How am I going to breathe on my own?

00:35:59.413 --> 00:36:01.677
I can't do this, I can barely last 15 seconds.

00:36:01.677 --> 00:36:06.016
And they said we're just going to keep going, we're just going to keep drying, one day at a time.

00:36:06.016 --> 00:36:12.137
So I kept drying and I remember I think it was like the third or fourth time.

00:36:12.137 --> 00:36:20.233
And I remember I think it was like the third or fourth time I made it to 15 minutes and my family was so happy and everyone was so happy.

00:36:21.074 --> 00:36:24.018
But it had taken some time to get to those 15 minutes.

00:36:24.018 --> 00:36:37.693
And I remember again thinking 15 minutes like how long is it going to take for me to learn how to breathe?

00:36:37.693 --> 00:36:56.248
For 48 minutes, which is how long I needed to be able to last before they would consider taking out the trach and it just felt so impossible to me and everyone said you're making progress, you are making progress and I see that now I'm able to look back on it now, but at the time it didn't feel like it and I remember just feeling so hopeless and saying like I don't even know why I'm trying.

00:36:56.248 --> 00:37:00.318
I just can't see how I'm ever going to be able to do this.

00:37:00.318 --> 00:37:02.788
The nurses saw that.

00:37:02.788 --> 00:37:04.873
They said you know, we got to get.

00:37:04.873 --> 00:37:06.516
We got to get Kit back in here.

00:37:06.597 --> 00:37:18.692
Kit's the name of the guy that's had GBS previously, so he comes back in and he brought the sign with him that time and it was actually a sign that one of his nurses who was also my nurse at the time.

00:37:18.692 --> 00:37:26.456
She had made this sign for him and she had put it on his wall and he said you know you need this more than I do.

00:37:26.456 --> 00:37:27.817

Surviving Guillain-Barre: A Mother's Story of Struggle and Triumph with Holly Frances

Listen On

Recent Episodes

Related to this Episode

From Paralyzing Despair to Empowering Hope: A Journey Through Guillain-Barré Syndrome