Recently I was interviewed for the Emotional Autoimmunity podcast with Kerry Jeffrey.
In this interview I share my stroke story which began in Feb on 2012 as well as how I came to be diagnosed with a thyroid condition while recovering from brain surgery in November 2014.
Connect with Kerry click here.
To listen to the interview I did with Kerry for the recovery after stroke podcast with Kerry as my guest click here.
Discover how to support your recovery after stroke go to recoveryafterstroke.com
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was chatting with my wife was no issues are all good. We got to the hospital emergency door and she dropped me off there and said, Look, I’ll go and park the car and I will come back and see you. So I don’t reckon it would have taken her more than around 10 minutes or 15 minutes to get back to me. But in that time I had gone to the triage nurse and started to explain to them that I was feeling this, these sensations again. And by the time
By the time I walked another 50 meters from the car to the triage nurse I had started to forget things. And I don’t remember being able to respond to the nurses are asking me what my name was asking me what was happening to me and all that type of thing and all I remember was blacking out and then waking up a little bit later. What seemed like maybe for four or five minutes later and from what my wife said My wife has said and there was a strange lady at the end of my bed saying, Do you know who I am? And I said, No, I don’t know who you are. And it turned out to be my wife.
Bill from recovery after stroke.com recently, I was interviewed by Kerry Jeffrey from the Emotional autoimmunity podcast and Kerry and I had a conversation about my stroke journey and then being diagnosed with a thyroid condition after brain surgery, literally while I was recovering from brain surgery. In this interview, you’ll get to hear my story. You get to hear how I became to be unwell, a little bit of my background and how it went on the journey to try and heal my brain and my thyroid, and then rediscover myself and emerge from the entire saga as better version of myself, even though I was a little bit physically different, and now living with deficits from brain surgery. And also the negative side effects of a thyroid condition. I hope you enjoyed the episode.
Hello and welcome to the emotional autoimmunity podcast. I’m your host Carrie Jeffrey. This podcast is all about having conversations about real life with chronic illness, bringing you interviews, information and inspiration to help you live your best life with chronic illness. Welcome everybody to episode eight of the emotional autoimmunity podcast. And my special guest today is Bill Gasiamis. And in February 2012. Bill was a busy father with two teenage kids and was the owner of a very successful property maintenance company but Bill experience three hemorrhagic strokes in as many years and he ended up having brain surgery at age 40. Using strategies that he discovered through his own trial and error. Bill was able to compliment his medical treatment and surprises doctors and occupational therapists with the speed of his recovery. And as a result, Bill has made some permanent changes in his life, which I’m sure you’re going to share with us today. Hi Bill Welcome.
Hi, how are you? Kerry?
I’m great. How are you?
I’m doing really well. Thanks.
That’s good. And so well, three hemorrhagic stroke. So I can’t imagine what that would have been like.
Well, kind of not fun and interesting at the same time, so interesting from an observational perspective, but definitely not fun because of, you know, all this stuff that you can imagine that goes that can go wrong when somebody bleeds in the brain. And not fun for me, but also not fun for family, friends loved ones, you know, the kids its was a pretty challenging time, I was really horrific.
I can only imagine and was was the first one. I mean, was that with the worst one? I mean, after that one, you must have thought well, that’s done, you wouldn’t have expected anymore.
Yeah, yeah, surely one, one brain image in a lifetime is enough. So what happened was I woke up one morning on on a February in 2012. And it was just due to go to work as paranormal and I put my shoes on. And when I went off to walk, I noticed that my big left home was feeling numb, and then a different to the numbness that you might get, know, the more join, just couldn’t feel it. I knew it was there, but I just couldn’t get it to respond in the same way. So when I popped my shoes on to go to work
I got through the day, normally there was no problem there, it was all good. And the next couple of days as the time progressed I noticed that the numbness spread from the foot. So from the big toe to the foot. And, and it started to get to that point where I had now really paid attention to it notice that it was happening, but I was still able to go about my my daily routine.
So it kind of got worse after about day three day for what I noticed was that it started to spread beyond my ankle now and by day three and four, it was pretty close to where my knee began at the top of the at the bottom of my thigh and I thought you know, it’s a good time to go and see a somebody about it. And because I was in that maintenance business and we used to lift you know, heavy things, I thought I’m gonna go catch up with my chiropractor he was, I was on speed dial relationship with because I doing silly things. And it and I went and saw him and he said, “Look doesn’t seem to be an issue with your back that might be causing this numbness just pay attention to it. And if it changes just let us know, and then we’ll, we’ll look at it.
So what was happening was the numbness continue to spread and I got to the seventh day after the numbness, I first noticed the numbness. And by now my entire left side was numb and I couldn’t get up on a on a letter word properly without paying attention to where I was putting my foot. And I couldn’t balance on the ladder properly. And it was a little bit weird and a little bit unnerving. But again, I didn’t think that it was going to be anything major, like a brain hemorrhage. So of course thats the last thing you’re thinking. So when I went to the chiropractor again, that seventh day after I made an appointment with him he said look, whatever the issue is, it’s not happening in your back. And I suggest you go to the hospital.
So I went to the hospital and eventually got seen and diagnosed with a bleed on the brain. And then from there, the next six weeks, according to the doctors was to be go home, do nothing. And we’ll see you in six weeks for a follow up to determine why the bleed has occurred. And whether it’s continuing to bleed. So I thought that was it. You know, I thought all right, well, in six weeks, they didn’t seem too stressed out about it, the amount of blood was probably about the size of a cent piece, although it was causing some impact on my sensation. There wasn’t a massive concern about it causing any major problems to me, other than what I was experiencing.
But what had happened was it was bleeding very slowly. And that’s why the numbness started to come on really slowly from the toe all the way up after seven days to the entire left side. Because as the blood increased in size and the amount of blood increase in size it started to impact more and more of the brain.
So that was interesting. So that six week when I was at home, I said to I said to my guys at work, I said look somebody come and pick me up because I’m bored out of my brains take me to work. And while I was at work with them, just watching them work, just paying attention to what they were doing and not really working. I started to feel the numbness again.
And this time I couldn’t it happened really quickly like a got to the point where I couldn’t feel my entire left side really rapidly within about 10 minutes. And had one of the guys drive me to drive me home, thinking that that was the best thing to do. And on the way home or a my wife told me to pick me up to be ready to go to the hospital. So I went with her jumped in the car and we live about it’s about a good 20 minute 15 minute drive i’d say from home.
And on the way from the hospital to I beg your pardon from home to the hospital. I was chatting with my wife there was no issues it was are all good. We got to the hospital emergency door, and she dropped me off there and said, Look our game plan to kind of come back and see you so. I don’t reckon it would have taken her more than around 10 minutes or 15 minutes to get back to me. But in that time, I had gone to the triage nurse and started to explain to them that I was feeling these, these sensations again. And by the time by the time I walked now 50 meters from the car to the triage nurse, I had started to forget things.
And I don’t remember being able to respond to the nurses they were asking me what my name was asking me what was happening to me and all that type of thing. And all I remember was blacking out and then waking up a little bit later, what seemed like maybe four or five minutes later, and from what my wife said, My wife has said, and there was this strange lady at the end of my bed saying Do you know who I am? And I said, No, I don’t know who you are. And it turned out to be my wife.
So to to wrap up, you know, was the first one and the second one different or were they worse,. the second one was definitely the worst because it actually put me out of action. And then when I woke up from that, I didn’t know who people were couldn’t recognize people, I had forgotten what had occurred to me all those types of things. But then also, later on the symptoms um that remained after that bleed, which by now have become around the size of a golf ball were that I couldn’t make sentences, I couldn’t type an email, I couldn’t remember who had been to see me, there was so many things that I had lost, I couldn’t finish sentences, I could start sentences and, and lose my train of thought. So I was extremely fatigued. And there was a lot of other challenges, you know that you that make it really sort of scary, and unnerving. And while you’re in it after the second time, you’re thinking, Well, you know, what, what’s around the corner for me?
And how did I actually when you went in the first time and you said they diagnosed you with a stroke? Like how did they reach that diagnosis.
So what they did is, we went into CT the first time and we did a quick CT, and that just revealed what they call a shadow on the brain. And that’s a pretty basic procedure, very simple, very quick to get a response and some kind of a result. And then after they’ve done that, then to get more details more information, they went and did an MRI in a series of MRI’s. And then that revealed for certain that it had been a blood vessel that I had burst and started to leak.
And so was the first from the first stroke. And at first sensation when you were diagnosed, was it the same blood vessel that was just continuing to bleed, increasingly larger amounts to the point that it affected your brain and you woke up and you didn’t know anybody.
Yeah, that particular blood vessel was one of the little ones. And the condition that caused that bleed is an AVM Arteriovenous malformation, so basically, it is some malformed blood vessels that instead of being you know, beautifully straight, and, you know, curving running with the flow of the brain or wherever they need to see what they are, is they’re tightly wound up like a little ball of steel wool. But on a very microscopic scale. And one of those was one of the blood vessels within that little ball of, you know, muddled up blood vessels became weakened. And as a result, just started to leak and, and eventually, you know, blood massively for whatever reason.
And I guess it would take time for the brain to be able to get rid of that blood wouldn’t have I mean that you’d be sort of waiting for the blood to subside, or was the point of the surgery repairing that vein and removing the blood clot.
Yes, and between Episode One, Episode Two was six weeks. So when the blood clot becomes the size of a golf ball, and the doctors are afraid to go in and operate, because they don’t know what they’re going to find. And they don’t know what they’re going to potentially make worse, what they do is they said to me, look we’ve got two choices, we can go in and do an exploratory type of surgery or, and see what we find them and deal with it or we can let it go. And allow it to just subside and monitor it and see what happens.
So when they said to me was an exploratory type of surgery, I preferred that we didn’t do anything, because these types of blades only occur very rarely. And then the second bleed is extremely rare. It’s not likely to bleed again after the second time. So I took the approach that what we’ll do is we’ll just monitor it and see what happens. And between the time of the second bleed and the third bleed, almost 20 months had elapsed.
Wow. So you would have been just starting to get back into your life and starting to reorient yourself. And I was thinking bill as you were talking about that, like when you said you woke up and you couldn’t recognize your wife and you weren’t sure we were what year it was to be faced with those sort of decisions. Like you’ve got strangers in front of you, you don’t really know what’s going on, and who’s around you. And they’re saying where we’re thinking about having surgery in your head, you know, your brain. And that just to make that decision to say, All right, we’ll wait. I mean, that must have been so overwhelming.
Yeah, I mean, so I said, I said that the time that elapsed between then and the third situation was 20 months was actually around 32 months, it was almost three years between the first bleed, the third bleed, and then surgery. So in that time, between the second bleed, and the third bleed, what I’m doing is waiting for this thing to subside. And yeah, I have to make critical life changing potentially decisions. And I’m faced with, you know, doctors jargon and serious implications of work related implications, bills, family, all that kind of stuff.
And the whole time I’m trying to make those decisions, my brain is actually offline isn’t working properly. And I’m losing the ability to make rational, you know, thought processes and to begin at one end, and then ended it the logical end of that thought process. So it was extremely difficult and challenging. And I suppose one thing that didn’t need, which is kind of a blessing in disguise was it didn’t need overthinking, it needed a gut decision, and it needed me to do something, make a decision and stick to it and and follow it through.
So clarity in my head and the ability to, you know, make logical conclusions wasn’t there something else sort of kicked in and help me do that. And it’s, you know, my wife doesn’t know anything about that sort of stuff, either. You know, we’re not doctors, we don’t understand anything, we’re just trying to navigate our way into some kind of a good outcome, it’s a really bizarre situations i have been in yeah,
ooh, I can really relate to everything you’re saying on two different counts. Because at the worst, when my thyroid failed, my brain was so affected that I was aware that my brain was affected, like I knew my brain wasn’t working, it was like, there was some part of me almost sitting back observing that I couldn’t sink and I couldn’t find words, and I couldn’t make decisions, and I couldn’t talk properly. And be aware, when you’re aware, the you know that that’s happening. I mean, for me, that was the most one of the most terrifying things,
It’s Iike witnessing yourself not being able to function. That was really, really scary. And then the other way that I can relate to that story is what I’ve always said about when I fell into chronic illness. And it was such a dramatic fall, that it was literally like being dropped into the middle of a brand new country with no map, no guidance, and being left, find your own way. And I can imagine, that must have been a similar feeling for you, when this has happened. The Language Hearing doesn’t make sense. It’s all this jargon. No one can give you any real directions. And for most of it, you sort of left on your own to try and figure it out.
Well Yeah, you’re given advice, and it’s hard to sign papers and all sorts of things. But they don’t really mean anything, the advice doesn’t really mean anything it. They know what they’re trying to say, and they know what they’re trying to achieve, etc. But we don’t necessarily able to connect, when I wasn’t able to connect the dots. And that’s weird. What you said is exactly what happened to me is, I know that part of my brain is not working. But I just don’t know which part and I can influence it to start working. And I can influence that to help me make a decision. But I’m very aware that it’s not working well, and then that causes frustration. And then that causes difficulties, you know, in
in, committing to something that difficulties in responding, and they’re just looking at you hoping that you’re going to be able to give them something that they can say, Yep, that’s what we want you to do that the doctors are really looking for me to say to them yeah. I agree with what you’re saying we will do what you said, but I couldn’t really, I don’t think I was fit to do anything in that stage, you know, to sign any documents or do any of that stuff. But I think I think what I needed was a power of attorney was that bad, like my brain was that far offline. And there was so much so much of the critical thinking gone and the decision making ability have gone, that I didn’t think I was in any state to make any decisions. Whether they were major or minor, and especially not in relation to you know my well being at that time.
And so they you use a font, you’re the breadwinner of the family, I’m imagining you can’t work, your brains not working enough to even probably make business decisions and and tell your employees what to do or how to keep things going. And you would have had physical disability, I’m imagining at that stage Bill.
No, I didn’t really have, which is another strange thing. I, the numbers have gone away the blood vessels, the clot was bigger, but the numbness had gone away. It’s such a bizarre thing, like completely different to the first time but all these major decision making processes with regards to work and communicating with my clients and my staff. Were also not there. So I think for the first I haven’t asked them, but I think for the first few months, they were pretty much navigating through the business side of you know what needed to be done on their own, and somehow between my clients who were very loyal and amazing clients at the time, that we’re communicating with each other with my employees, and managing to get the jobs done with me being involved, but just at a very high level involvement, not at the nitty gritty, you know, type of detailed part of the, what was required? Hmm.
And how did your family even be able to make sense of that situation is that I imagine, lots of things would have had to change?
Well, yeah, my wife was wife, she was somebody who went to work. And she was somebody who helped raise his kids. And she was a daughter to a mom who was unwell. And a dad who was unwell. So she, she had a full book. And the last thing she needed to become was a care of somebody who was recovering from stroke, especially carer of somebody is recovering from something that she has no idea about no information.
When I went home from hospital, you know, she wasn’t any wiser as to how to help and what to do. And, you know, she struggled, and she didn’t get it, and she still doesn’t get it even today, you know, when I have my ongoing challenges that, you know, brain surgery can create, she still doesn’t get it. And it’s not that she doesn’t want to get it or doesn’t have the capacity as a human as an intelligent human to get it and she just doesn’t get it. Because how can you put somebody in your shoes and explain to them this is what’s happening to my brain right now. And then understanding when they’ve never experienced that. Never want her to experience it. Therefore, I never want her to get it but not getting it makes it extremely frustrating both for her and for me.
Hmm. And that’s I think that’s the common situation that everybody that I’ve talked with that has chronic illness experiences, because on the outside, you can look the same as you were, and you might still be functional. But you know that things are very, very different. And people might still have the same expectations of you. And they expect you to do what you’ve been doing that when you’re saying well, I can’t do that. They they don’t understand. I mean, they don’t understand the day to day adjustments that you’ve got to make. And I think people don’t get it. They just say they don’t get it until they get it and you never want them to get it because I wouldn’t wish wish on my worst enemy.
Yeah, exactly. And not only that, I didn’t look like I had a stroke. Until they opened my head up, you know, nearly three and a bit years later, and I had a massive scar and I had to learn how to walk again. Until then, I didn’t look like I had had a stroke I look normal, There was no drooping on the face. You know, there was no walking weird. There was no clenched fist or arm that wasn’t working. It was nothing. So as far as they were concerned, like, he looks as good as as always looked.
It was just bizarre that. For the first time I really understood what it was like to have a mental disability, you know, where people are struggling with psychological challenges, and they feeling a certain way and and and the outside world doesn’t get them and they feel isolated. And they feel alone. Because
oh yeah you look great man. That’s what I used to get. Wow, looking good,
Hmm Yeah, and that’s, that’s the hard thing. If you look right on the outside, but inside, there’s a whole lot of other stuff going on. So what led to the surgery
Yeah so, then, as things subsided after that first bleed it was continuing to do what they call micro bleeds. But I didn’t have that massive episode again, until November of 2014. So feb 2012 was the first experience. November 2014, was third experience. And in November, what I what had happened was I was by now I was back to work, the blood, like you said had started to subside, it started to get absorbed by the body, it’s starting to get broken down. And it started to decrease the size of the clot. So everything came back on the line, my ability to work, my ability to remember make sentences type an email, do all the stuff I was doing before had come back. And I was driving to an appointment with a client. And I noticed a numb sensation on my left side. But this time it was burning, Like I had been in the sun and only half my body was burnt.
So what, what I did was I pulled the car over to try and work out what was going on on my left leg and my arm and the rest of my body just got out of the car and I walked around the floor three and the car to shake it off or whatever, I don’t know what I was doing. And it went away. As soon as I got out the car and walk around, the car it went away, so jump back in the car. And then took off to continue to towards this appointment and it automatically happen again.
So at this time, I realized that something was going wrong, I didn’t know exactly what it was, I suspect that that it was potentially another bleed. So I was in Melbourne, and I was driving around. So I thought I drive myself to my up to the hospital that was taking care of me. And when I got there, I went to triage and I said to them, Look, I think I’m having other bleed, they took me in and they CT scan. And literally within about half an hour of me having that experience, they realized that I was in fact having another bleed. And this time, the bleed, you know was a little larger than the first time but not as big as the second time. And the and I was admitted to hospital.
And then I was approached by my surgeon who was monitoring my condition for those almost three years since 2012. And she came in and she said, Look, these things bleed once, and they very rarely bleed a second part.
Now, yours has bled twice, and we didn’t expect it to bleed a third time. Now that it’s bled a third time, it’s unlikely that it’s going to stop. And the next one could be massive and could be more catastrophic then what we don’t want to do is put you in a situation where you’re at risk. And we also don’t want to put anyone else at risk. So you know, they were afraid that driving couldn’t badly, you know that I could fall somewhere and black out and not be found. And she basically said to me, we have to take it out. And I completely agreed with her, I had no reason to argue with her or disagree with her. Because the third time was the symptom one as scary as they were the you know, the second time, but definitely by then, you know, we were all over this thing continuing to occur. And we figured that the best thing to do would be to get it resolve some way or another?
And how did you prepare yourself for facing brain surgery?
Well, something must have guided me from the very beginning Kerry. That’s an awesome question. Because I started to prepare myself almost immediately from first the first bleed, not that I was preparing for surgery, but came a little bit disheartened with the doctors, not that they don’t do a great job. And without doctors I wouldn’t be here. But there’s a big gap in the information that people are given in hospital and what in fact, they actually need when they go home.
So I started to do research, when I was up for it. And when I could remember for a few minutes and it wasn’t too tired, I would research to find out, you know what I could do? And low and behold, you know, there was a ton of things I could do. But let me explain to you the kind of guy that I was before stroke and who I became so the kind of guy was before stroke was a tough trading Dude, you know, that pushed through barriers and broke through, you know, things in my way and overcame hurdles, and did all the things I need to do and just push through and got things done and the most I used to look after myself was going and get my back manipulated, because I popped it something out or I pinched nerve or something.
So I started to discover that, in fact, what I could do is influence my own well being and start helping my body to heal. And I was really, you know,
I did an audit.
I’m back it just went to a phone call for some reason.
Otherwise you go,
yeah, so did I say I did an audit,
Ah no you just said you researched in every moment that you could when you weren’t fatigued, or when your brain was working and you found out there were many, many things you could do to help yourself.
Cool. So then what I did was I did an audit of me my life, and all the things that could have possibly contributed to a brand new.
And you wouldn’t believe it, there’s was so many things that could have contributed that I might have done. And one of those things was smoking. One of those things was drinking, not necessarily excessively but drinking, not eating properly and not looking after my diet. For me one of the big issues, how was sugar and became later on sugar. And I discovered that, okay, so what I can do is if I’ve been and I was completely honest with myself, and I, you know, look myself in the mirror and said, right mate, you are in control of the things that you are in control of you’re not in control about anything else.
So what you can do is you can make take massive action to influence your well being for a positive outcome, you’ve got children, got a wife, you got people that love you, you have to be here you can’t not be here. So I did some research on diet. And that was, I think the biggest thing that I changed for the first time in my life, I was considering whether or not drinking a can of coke or was actually beneficial. Whether you know eating, you know, a loaf of bread a day was beneficial whether drinking excessive amounts of coffee was beneficial.
So I realized that I could change that. And then I learned about how that positively affects my body and my well being. And I trust the research that I found that actually taking those things out enhances well being it doesn’t decrease well being. I did that. And I moved on and continue to do that. But so what I wanted to do was I wanted to take two paths, I wanted to prepare my body for the potential surgery that may or may not come but also wanted to prepare my mind. And this is the new me, this is the part of me that nobody had ever seen before.
And a lot of the things that I did included, meditation included Reiki, yoga, included, coaching, life coaching, you know, to really, deve, you know, delve deeply into who I am and how I was, you know going about my life. Now I really paid attention now to my relationships and how I was treating people, family, friends, etc. And all of this helped prepare me to be really calm when it came to surgery, because one of the things that I had, in front of me from the first bleed, to the second bleed was I had a lot of time I had nearly three years.
And you know, when they say, you know, when somebody’s given a terminal, somebody has a terminal illness, and they’ve got time, and they come to the point where once they, you know, face a few of the demons and understand what was happening and speak to the people that they love, and you know make peace and find themselves spiritually and all that kind of stuff that they can let go easier, and can and can transition out of life into death, you know, really amazing versions of themselves. Well, I kind of did that not expecting to pass away because my, my diagnosis wasn’t terminal. But I thought that if if on the operating table, things don’t go well. And I don’t wake up, I was really comfortable with knowing that now that I had done all this self reflection and started to tell people i loved them or apologize to my children for being an ogre from time to time and told my wife that she was amazing more often. And then started to look after my body, I was mentally, spiritually and physically, a much better version of myself. And when I presented myself to my surgeons, and this is what I told them, I said to them, I’m going to be the best patient you’ve ever had, I’m going to be the perfect, you know vessel or you guys to do your job and get the job done so that when you complete your task, we all have the best outcome, you guys get a great result, and I get a great outcome. So that’s the that’s the compact version of how I prepared myself.
No, I love that, that that’s amazing. And so it sounds like you sort of handed everything over and said I’ve done in thing that I can do. And whatever comes then I’ll deal with it.
It’s exactly what I said. And it was very liberating. I’ll tell you, it was one of the most calm and relaxed places I’ve ever been in. And everyone else around me was, you know, a mess but. I wasn’t and I was keeping then calm. And I was telling them that it’ll be right. And I was explaining to them that no matter what comes, you know, I’ll ever come in. And you’ll see, I’ll get back, you know, and everything will be fine. And it’s exactly what what I did you know. And when I reflect on it, I also think I was trying to convince myself, not just family and friends. But yeah, I was just an amazing version of myself the best I’ve ever been coming from a tradie background.
hmm. And I’m really, I’m interested to the end said that was a physical, mental and spiritual journey, and a transformation because I know, from my own experience, and other people that I’ve talked to that when something like this comes into your life, it can cause you to question everything you believe so far, and gain work through your own fears and work through your own stuff, and come to get greater clarity and great a fight for greater belief or greater trust. And it sounds a little bit like that was also part of your experience.
Yeah, because you gotta let go, I found that I had to let go of all the bullshit stories that I was telling myself, you know. So once you kind of get to that point where there’s no more bullshit. Well, what that makes way for is just truth, whatever the truth is you know, and I’m a problem solver. by nature, and, you know, painting, maintenance sort of company, that’s all you’re doing, fixing people’s problems, and you overcoming problems and solving challenges. And so I just took it upon myself as being another challenge. But at this point, the stakes where a lot of I had to stop saying why something was possible and I had to find out what was possible. And then once I found out why it was possible, now wanted to figure out what the path to that end result was.
So the spiritual part of it was, I think, one of the most important parts, because that’s what they believe made me feel in my heart, that everything would be okay. And then, you know, the trust in the gut came, as well. And then the idea, the idea in the head was, you know, making the right decision about how you’re going to prepare and the right decision was, don’t leave it in the hands of the doctors to give them a, a great body to operate on.
Because that’s not their job, their job to be great at what they do, Open heads up and take stuff out and close the head up and get you back out into the world. So I took responsibility for what was my part of you know that, that journey, the part of the task, or the part of the job that we all had, you know, which was to get me back on my feet, doctors couldn’t take responsibility for that. Nor did I want to be responsible for, you know, operating on my own brain have those skills. So that’s, that’s what I did.
And it sounds like something really needed to be done. Because otherwise, we’re walking around with this ticking time bomb, waiting for that to go out. And how can anybody live under those conditions?
Yeah, it’s not nice. Because you do put a couple of things on hold, you know, you don’t take risks with your family and your car, you know, and something more that is in your head, you know, my wife became the regular driver for a long time until I was given the all clear. Yeah, and you don’t want to put, you don’t want to do that to your family either, you know, Mum and Dad were freaking out and this guy you know he’s got something going on in his head, iis it going to happen again. And you know, you don’t want to do to the children. So it’s a hard decision, but it’s the right one and really needs to be done, you can’t not resolve that matter, you know,
you’ve just got to face that and go in and, and hope for the best and do all you can to prepare as you did. So post surgery, what happened?
My my story, you know, it didn’t, I’m the kind of guy I like a lot of attention. And so I find things to get people to start fussing over me again. So you know, we’re in, came out of surgery and realized that I couldn’t feel my left side, my entire left side. And we were going to, I was booked in for some rehabilitation. So the rehabilitation was to happen for about a month or two. But there was going to be a few days between surgery and by the time I was transferred out to go to the rehab facility. And while I was in bed, I was having a couple of rough days, about two or three days after surgery, and they didn’t know what was wrong and why it wasn’t more alerts for then I
then then what they expected me to be and they ordered just some random chest x rays. And just to check everything out and make sure everything’s okay, my bloods came back, okay, and all that type of thing. And then the doctor comes after the did this chest X ray, and he just looks at me. And I’m looking at him and he’s looking at me and then he said, Look, are you all right. And I said what do you mean am I alright? of course I am alright, but apart from the obvious. He said well, can you swallow? I said Yes, I can swallow. Can you breath? Well I’m talking to you on talk yeah I can breath
What are you on about what are you doing? And he said, “Look, what does scan and we found that in your in your neck or in your throat somewhere near there? We notice this deviation in your oesophagus and in your windpipe.” I said okay, what does that mean? He said “well something is pushing your esophagus and your windpipe to the right by about six centimetres”
“And Haven’t you ever noticed anything?” I said, Well, no, I haven’t ever noticed anything. And they were looking at my throat on the outside and my neck on the outside and they couldn’t see anything either. And so OK well far out you know, here we go again, like What is it there what’s going on. They did a few more tests and now what they found was that I had an enlarged thyroid gland on the right side. And they said that one of my glands had become the size of a cricket ball. And this was news to me, this was the most amazing news I never experienced or heard anything about it before.
And they did a few tests. And they felt around and they in fact confirm that what it was doing it was growing. But instead of going outwards, so that was it was growing inwards and down. So it was not obvious to anybody that had become that large. And especially not to me and it because I could swallow on it and all those things normally, I didn’t notice that it was a problem until the chest X ray.
So it wasn’t cancer?
not just a goiter, it was just an enlarged thyroid gland. And for some reason it had enlarged and become that massive. And they discovered that it wasn’t a cancer by doing that amazing, beautiful test, you know the one Have you ever experienced that where they asked you to lie back they put a a little bit of local anesthetic on your throat and then they pierce you throat into the goiter with a needle. And they move it around, up and down Kerry. They take it out and then they move it over by one centimetre and then they go again. And they keep doing that until they get what they call enough samples to take to pathology to test
that sounds very unpleasant belief.
And that was while I was lying down with a patch on my head and a scar on my head and brand New hole in my head that they had just put back together
you must of wonder that at this stage is this stuff going to ever end or is it just they just got to find something else.
Yeah, well, I felt like I felt like well what do we do now like what’s next. So that was a little bit unnerving. Because until we knew that it wasn’t cancerous and it wasn’t more serious than a g0iter which is serious, but not the next level of seriousness. Again, here was me now still having not been able to get up on my feed from brain surgery. And we’re dealing with another issue. It such it was a bit of a blow.
Yeah, because goiters normally grow out and they’re quite visible on the neck and they can get quite big. So that’s they picked up reasonably easily that but for this thing to be sneakily stealthing inward and down that’s incredible?
Yeah. I tend not to do things in halves I tend to do things really know you well.
You attention seeker Bill.
I go all out and get the most bang for my buck.
Exactly. And so did they end up removing that that part of the thyroid?
So you know, what’s interesting is that, at the beginning, I didn’t want them to take it out. I was fine. Nothing was going wrong. But I don’t know what it was cold whether is psychosomatic for what it was. But as soon as they told me that I had a large thyroid gland, guess what happens and I started to feel lethargic, started to get cloudy again. And I started to go through all these things that I was experiencing when I had my second blade, you know, the fatigue, the cloudiness, that inability to make decisions and all that kind of stuff was was coming back
And had me really confused and perplexed because I was really well for the majority of the time. And I never ever had any issues in my life. Except now I know that some of the issues I did have like my gut, my bowls, and my energy levels when I was growing up, were most likely related to this underactive thyroid, or sometimes it was sort of overactive. Sometimes it was under under active thyroid gland.
And, and now it was really playing up, you know, and that was really making a mess of things, especially since I changed my diet, you know, still sticking to that. I was still, you know, as healthy as I’ve ever been, you know, I was still doing all those amazing things to get my brain right. But at the same time, now, my thyroid decided, you know, to pack it in and say, you know, we’re going to, I’m going to give you a hard time on your body temperature now, I’m going to make it difficult for you to think and to do things that have energy.
And I just thought check this thing out. I don’t know whether it was psychosomatic but something triggered it and made it go to the next level. So I avoided touching it for about 18 months to two years. And the reason why is because I was sick of being in a poke them product by doctors over the last three or four years. And we got to the point where eventually it was operated on because I think my surgeon was overly enthusiastic to open up my throat and take it out.
And I say that now because that happened in 2016, and reflecting on it now, I really think that was the wrong decision to take that half of my thyroid out, especially since what it led to was then even greater symptoms of thyroid challenges, even greatest symptoms are under activity, weight gain, and temperature issues. And you know, all the things that you actually have experienced in your own thyroid condition.
And it would have been difficult for you to tell at that stage. Well, what’s what’s a hangover from the stroke? And what’s the brain fog and the lethargy, and the inability to think that comes from being hyperthyroid.
You nailed it. That’s exactly what was going on. And I remember going backwards and forwards to my follow up appointments with my head surgeon and my follow up appointments with my thyroid surgeon, and all the special that I went and consultant and then separately and to get third, fourth and fifth opinions. And that was the one question I was asking. I was like, okay, so is it what I’m experiencing from my head? Or is it on my thyroid?
And they would just not getting anywhere could be from both? And I’m like, Well, how do I make a decision now on what’s going to happen to my thyroid? You know, when I don’t know what it is that is causing these symptoms, which are identical, which are exactly the same. And when I read up on thyroid conditions and I read a couple of the books, you know, my favorite book I read was a book from Dr. Datis Kharrazian. Yes. You know, why is my thyroid still playing out? Or something like that? Yeah, yeah. You know, and
I’ve got that one. It’s a good one.
Yeah, when I read that, and then compare that to the books that I was reading for, you know, healing the brain. You know, my favorite one being by Dr. David Perlmutter, you know, which was? The one about getting rid of wheat out of the diet?
Grain brain, grain brain
Grain brain, Yeah,
yeah, it was kind of like, wow these are identical symptoms, you know, and it just made it even more complicated, then make it even harder to make the decision.
Exactly. And then what would happen is you will run smack up against the biggest issue that all of us people with thyroid issues faces is the the inability of the doctors to understand or the lack of information or being held hostage to TSH testing and not being able to get a proper full thyroid panel. And just it’s it’s really difficult. And I think that is one of the hardest parts for myself and many others, and probably you as well to, to actually get a doctor who will listen to you and be willing to go beyond the very basic testing to help you find better levels of health is incredibly frustrating.
Yeah, my doctor, my general practitioner was sick of seeing me, and sick of me asking him to test after test after test. And yet, and at some point, he said, Look, I’m going to get audited on these tests by, you know, the government and I can continuously do these tests for you and I said, that’s fine, I’ll pay for them. I don’t care what it takes. But I want to know, I don’t want to know, just by TSH and T4 my T3, I want to know a lot.
I want to know everything about everything that might be related to it. And I would read the books and make lists of all the things I wanted him to test and he would test them. And then I would take that to the next stop there and see if I can get somebody to comment on you know, my results. So eventually, after, you know, going backwards and forwards too many doctors, I got to one who was a real arrogant guy, you know, I call him arrogant because that’s how it came across.
And i said to him, I want to know what’s causing my, my my issues, my weight gain, more brain fog, all that kind of stuff. Here are all my tests, but I’ve done over the last 18 months, 24 months and tell me what to do. And I’ll do it, you know. So anyhow, we got through this first part of my conversation, is that okay, so would you get all this information from? I said to him well, I got it from books and from the internet, that’s the last thing you wanted to get.
And then when he said to me, when you can’t do that you can’t go the internet and find stuff on the internet and most of that stuff is bullshit, and i said to him well, if I can’t go to the internet, where the hell am I going to go? I’ve been going to doctors for the last two and a half years to get somebody to say something about what’s happening to me and nobody has said anything. So until you can tell me what the hell’s going on. I’m going to the internet because I need to know something. And I need to guide you guys in some format. So that, you know, I can get to the bottom of what’s happening so I can take some action.
So he was he said, like, Okay, well, fair enough. You make a good point there. And then he asked me a really interesting question. And for me, the question had been asked, but not as directly as he and what he said was OK, let’s forget all this stuff. He goes, have you ever done an Iodine test?
And I said, No.
He said, why not? So no one’s asked me to in the, however long it’s been that I’ve been going through this, no one has asked me if I’ve done the iodine test. And he said, well go and get an iodine test done. Do that, and then come back to me and tell me what the results were. And then we’ll go from there. And you wouldn’t believe it, I wanted it and iodine test, Kerry, and my Iodine levels were almost at zero. So when I got to the doctor, and I showed him there he goes, Well, this is 99.9% of your problem now that you haven’t got your thyroid gland, because by then I had removed that half of the glad. He said, This is what your problem is, it is. Now I’m confident to say to you that it’s unlikely that any of the symptoms that you’re feeling with regards to lethargy and all that kind of stuff is related to your brain. It is most likely related to your iodine levels. And the reason why your TSH levels are increasing, and why we’re seeing some deficiencies in all the other things is because you are zero in iodine levels, and if it you start taking this supplement, you will feel better. And then we’ll touch base in a few weeks. So sure, sure enough, I would have got an iodine supplement. And within two weeks, I was a completely different person.
Wow thats amazing.
Yeah, and I couldn’t believe that everyone had missed this thing over the last, you know, a couple of years that I’ve been going through this and then what that does is that leads me to start studying and researching more and finding out why iodine is so important. And what I discovered is that it’s the main reason why thyroid glands become enlarged. Because what they do is they start to increase in size, to try and catch more iodine through so that you can utilize that to give me you know, to create all the hormones that it needs to create to energize us and to give our brain, you know, energy and the rest of it. And as it grows larger it impacts but the problem is people see it as being large and enlarge. And when when when I go to my thyroid doctors or on my surgeon, they only have one solution for a large I thyroid gland that’s to remove it. And since they only have one solution, when I asked them the question, what causes a large thyroid gland? They say nothing. Sometimes these things just grow.
and that’s exactly what was said to me when I went in and said, he said you’ve got this, your thyroids dead, it’s cactus. And I said why? oh we don’t know, it just happens. And I was like, in my mind, I’m thinking that doesn’t make sense, like something caused this to happen. I want to know, and that’s what set me off on my quest, because I thought it started somewhere, there’s got to be something that created this. And if there’s something that created this, then they must be something you can help to reverse it.
Absolutely. And one of the things that I then realized when he told me that I was low in iodine, and it was zero, and then it still took two or three months for it to click was that amongst all the other things that I was doing to support my well being I had stopped eating iodized salt.
And I replaced it with Himalayan pink salt.
And that was what took my thyroid situation to the next level of under activity and being and becoming so difficult to, for me to deal with. Because remember I said a bit earlier, I remember I said all of a sudden my thyroid stopped working and all these things it was around the same time I stopped eating iodine.
Unknown Speaker 55:59
and Isn’t this the the challenge though, Bill, it’s up to us with as a person with the health problems to pretty much try and get find all the pieces and put them together in a way that sort of makes sense. And will sort of determine causality. And then what you can do to to rebalance that. And I think what you’ve been able to do is amazing. I mean, just first to prepare yourself for the surgery and take that personal inventory and really be willing to look at yourself. And I think when we are willing to do that and say, Well, look, I must have been doing situations in my life so far that led to this. So I’ve got to take responsibility for finding out what that is so that I can create the best possible health and happiness that’s available to me. And I really think that’s that’s the turning point, isn’t it?
Yeah, it is. Because you know, when you’re recovering from brain surgery, or thyroid surgery, you feel really bad for such a long time. If you reflect on how good you felt before you were sick, you know, you kind of get a little bit of nostalgia, you know, I’d like to be that well, again, I didn’t want to be as well as I was before I was sick, I wanted to be better than that.
Because being as well as I was, before I got sick meant that I was on the verge of being sick. So I wanted to get better than what I was. So that’s what I focused on. And I got that and who benefited from that. Everyone else benefits around me, that’s fine. We benefit the most. I’m my own client, you know, like I benefit the most from taking steps to really take responsibility for my own action for my own well being and take the parts that are not the doctors responsibility away from them. And you know, bring it to me, we have we live on the best time in the planet Kerry you and I would have been dead for two years ago.
No doubt about it, we now have access to the internet from our homes. So you know what, when we’re completely stuffed and, can’t walk or have the energy to exert ourselves, we can, if we can log onto a computer, we have a world of information at our fingertips through Google, and it’s free.
So that’s exactly what I did like you any moment where my brain was actually working, and I could focus on was on the internet, I was reading I was watching, I was listening, I was absorbing, and I was looking for information.
Yeah. And, and not only is it available, it’s easy to read most of the time, you can you know, read extracts of research and articles, and you can get amazing books. And you can find amazing communities online like yours, you know, and my community that I set up. But, you and I we found each other because you were doing amazing work, you know, in your space a long time ago, well for me was a couple years ago, if not longer, that I found you. And I was inspired by that i thought well, but here’s a lady who’s going through something traumatic and who’s looking for solutions and coming up with outcomes. She’s posting about her good days, and just posting about a bad days. So it seems like it’s going to be a bit of a roller coaster. But let’s work towards focusing on, you know, well being and then celebrating the good days, and then, you know, resting and retreating on bad days.
Thanks, Bill I really appreciate that. And I think we’ve talked about this with a lot of the people I talked to that when when you see people that have got your illness, and they seem to have fix themselves and whether they changed their diet or whether they’re on a specific medication, it seems to come a point where they don’t acknowledge the illness anymore. And it’s like, you can imagine that they’re over it and they don’t have it anymore. And when you see somebody who seems that far removed from where you are, it’s not at no longer aspirational, or inspirational.
Because you start to think they’re two different to me, they must be strong than me, they must be more determined than me, they must have more help than. And I like to be honest about my life. Because while I am absolutely blessed to be fairly stable, I still live with three chronic autoimmune conditions. And when you’ve got autoimmune conditions, you are going to flare, I mean, there’s no, there’s no way you can avoid it, it’s part of the experience. And that can be set off by anything, you can be doing everything perfectly for your health, and you can still experience the flare. And it’s just part of that learning to live with us and talking to people about and that’s why I’m doing this. And I know, that’s why you’re doing your podcast, because you want other people to hear other people’s stories and experiences, because our stories are healing. And when you can hear somebody who’s been through a very similar thing to you, that gives you hope, and that gives you comfort. And that gives you reassurance that, hey, they like me, and they did that. So I can do this too.
That’s it and everyone’s at a different stage in their journey. So you know, when you’re at the beginning of the journey, you want to hear there is an end to the journey, even though you don’t know how you’re going to get there, you want to hear that there is an end to it. And I’m not sure if there an end, when we have a chronic, situation like you know, thyroid issue, or a brain you know, um challenge, I have numbness on my left side all the time, every day, 24 hours a day, seven days a week, it’s like I sat on my, you know, leg that pins and needles that people feel when they sit on their leg and it goes numb.
I have that on my left side. So it doesn’t really go in. But there are days where I don’t notice it. And they are good days. Because that means that whatever it’s doing is out of my awareness. And if it’s out of my awareness, that means that it can’t really be impacting me too much negatively at that moment. And that creates a buffer between me and the illness. And that buffer gives me you know, more space to be me more space to be normal, or, you know, whatever version of normal I am. And then it enables me to, you know, remember what it was like when I was feeling like that. And when I having a bad time. I don’t feel so bad about it. I know ok look, retreat, rest, pay attention to what you just ate or didn’t eat. And you know what you drank or what you didn’t drink, you know how much time you spent over working or, you know, exerting yourself when you shouldn’t have and learn from that and then adjust and go again.
Exceptance this is so much a part of that. And you agree that it’s just, well, it’s here. And this is happening. And I’ve just got to find a way to make the best of it that I can if it’s sitting on the couch or whatever it’s doing. I’ve just got to try and make the best that I can.
Yeah, I don’t talk about it. People talk to me about what happens to me. So I’m at that point where I don’t talk about me. General day to day life on my podcast I do on the calls I do, with you I do and that’s perfectly fine. But it’s other people who come to me and say, Oh, look, how are you going you know how are you feeling it’s been a long time and people are still asking as if I’m just out of surgery.
I only talk about it when I am feeling unwell. Like anyone who’s feeling unwell from a stomach bug or a cold or whatever, that’s when they talk about that’s what I do. So I have accepted that my leg is the way that it is in my arm is the way that it is. And at the same time because of that acceptance, I don’t really consider it as I never do. I’ve never gone the path of. I wish it didn’t, although it would be great. If it didn’t do that. I don’t really go down a path of thinking, I wish I never had this happen, you know, or whatever.
And I some people can’t do that yet. But I’ve got to that point, you know,
which is fantastic. And out of all the things you’ve done build us to finish up, what is the thing you are most proud of.
There’s no doubt about I’m most proud of, um you know, healing my relationships with my children and my family and friends. And not that I was a terrible person, I was just a normal guy doing the best that I could do to get over the line. And you know, make ends meet, pay the bills, do all that kind of stuff. So you know, I was probably lacking resources to be a chilled out more calmer version of myself. I think I’m better at that now. As well as that I think that the instinct somewhere inside of me to say set up a podcast a few years ago was another thing that I’m extremely amazed with and proud of you know, and my podcast started off a little bit different. It wasn’t about stroke, it was just about sharing stories of people healing from various illnesses. But I found that I had a lot of traction once I set up the podcast, and specifically started to focus it towards stroke survivors and rebranded it and renamed so now it’s called recovery of the stroke.
And you can get it at recoveryafterstroke.com And what happens every single day, which I’m sure you’re getting, as well as I’m getting contacted by people saying that episode was amazing. I really needed to hear that or asking me a question via email or, you know, telling me what do I do, my family and friends have just gone through this and I can share them, I can, you know, show them an episode or get them to listen to a podcast that’s specific to their needs. And somehow that helps people be in a slightly better situation than what my wife was when she was dealing with, you know, the sudden of her drama partner having a brain hemorrhage.
And it’s that that need to give back. I found exactly the same thing because I was so I felt so terrified. And I felt so isolated, I felt so alone and lost. And when I started to feel better, I wanted to share what I could to give some reassurance because I think the internet while it can bring beautiful, wonderful, fantastic things and lots of research. It can also bring lots of despair, because you can read on the internet people with things the same as you who are dying, who are committing suicide who are lost, hopeless, helpless, flailing around looking for someone or something to help them. And I guess I like you I wanted to be bring a little bit of light, a little bit of hope, a little bit of comfort into that place to say, Life still can be good. And there’s so much we can do to not only help ourselves, but to help us it’s through the same experience.
Yeah, I had an interesting email literally was a couple of days ago, what he said about people feeling depressed and down, you know, somebody contacted me and said, Look, we’ve got, I’ve gone through this was three months ago, I wish I’d never woken up from it and every day I go to sleep. I wake up, I wish I hadn’t woke up from my previous night’s sleep. You know,
this person is somebody I don’t know, they haven’t reached out further than that. I’ve responded to that. I’ve asked them to seek help to ask, you know, ask for a referral to somebody to help you know, a psychologist a coach a counsel or anyone. I mean, it really helped me at the beginning, it’s another thing that I did, you know, so I feel like our stories are important, they’re important for sharing with other people, we definitely are going to save lives, I know that we’re going to definitely save lives by doing these things. So it motivates me to keep doing it, I definitely feel like we’re going to impact people to make a change to look at something more seriously, or to investigate something more deeply, and to find the solution for themselves.
Because I don’t know what your solution is, you know what your solution is, but you’re going to have the courage to go to that place to find the solution, you know. So I’m really touched and inspired by people who contact me for interviews, or the people who contact me for assistance and help and I can’t not do this anymore. So you know, I’m proud of it, no end and at the same time, it is extremely healing for me, every time somebody says to me, can you come and share this to a group of carers or to a group of nurses, people with brain injuries or to a group of doctors, it makes it feel like it was all worth it that, you know, it was meant to happen so that I could teach these people. And so that we can make slowly, little little increments of difference to everyone’s life, which all add up in the end, and become, you know, the most amazing blessing that they’ve received. And I know people can say that about their stroke sometimes. And I get it. But honestly do say like it’s one of the best things ever happened.
And that was beautifully said, Bill. So can you tell everybody where they can find you and what you can do to help them?
Yes, so I’m really proud that I’ve just recently launched my new website. Now we’re also just built into a community. People who are recovering from stroke and carers can join become members. And for that, what they get is a get one on one coaching by me in a forum. And they also get access to monthly trainings and they also get access to other people who are similar to them that have experienced stroke that they can communicate with and create connections with. And also, I’ll be sharing other bits of information about you know, the latest research for healing the brain stroke recovery. And I get amazing people on the I’ve had some amazing doctors on there. And leaders in neuroscience research on this. So if people are interested in anyone is curious, they can go to recoveryafterstroke.com which is the same place where they’ll find the podcast, which is also available on iTunes and Stitcher and all the other places where you can get podcasts from.
Fantastic and thank you so much bill it’s been a pleasure to talk to you. And thanks, everybody. I’ll be back in a couple of weeks with another podcast and another fantastic gift for you. Bye for now.
You have been listening to the emotional autoimmunity podcast. You can read the show notes over at my website, www.emotionalautoimmunity.com and sign up to get your free copy of moving through the grief of chronic illness, a nine phase model from anxiety to resilience, you can subscribe to the show on iTunes. And if you enjoyed this episode, I would love you to leave a review. Thanks for listening