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Episode 61: MaryAnn Bowman - CRPS & Gastroparesis
17 Plays1 day ago
MaryAnn opens up with honesty about her daily life with Complex Regional Pain Syndrome (CRPS) and Gastroparesis. She shares how a fall in the bathroom spiralled into a life-altering condition that left her unable to walk, in relentless pain, and dismissed by multiple healthcare professionals. Despite visible healing on scans, she was battling invisible agony.
We discuss the different ways MaryAnn manages her condition, with music therapy, strict routines, soft textures, and self-advocacy. We also talk about how she found a lifeline in ketamine therapy, a controversial yet transformative treatment that helped her regain mobility and her mental stability.
As a founder of several clinical research companies, MaryAnn also reflects on how living with a chronic illness has changed her perspective as a clinical professional, strengthening her belief in patient-centered care.
The song MaryAnn chose is I am woman by Emmy Meli.
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Transcript
Introduction and Guest Overview
00:00:00
Speaker
Hi, I'm Sylvain Berthelot and you're listening to On One Condition, ah podcast to raise awareness about health conditions by listening to people who leave them every day. My guest today is Marianne Bauman and we're going to talk about Complex Regional Pain Syndrome or CRPS and gastroparesis.
00:00:22
Speaker
Hi Marianne, how are you doing today? I'm doing well. It's good as can breathe. Yeah. Yeah. and I can imagine that that's not as as good as a lot of people, but we'll talk about that in a bit. Thank you.
00:00:38
Speaker
Thank you for joining me today on the podcast. It's it's a pleasure.
Music as Therapy: 'I Am Woman'
00:00:43
Speaker
As you know, I like starting with a song. So could you tell us which song you chose and why, please?
00:00:49
Speaker
Um, so I chose Emmy Mellie. I am woman. When I first got CRPS, it was very difficult to do things and move. Um, my limb wouldn't, it was my actual foot.
00:01:05
Speaker
It wasn't moving. um and so i had to do, um physical therapy and I would actually do it at home as well. you had to like get the actual limb to move and it was painful to go through and I would just be under my red light and had my headphones on and I would just play it over and over and over. the song itself was actually,
00:01:26
Speaker
just a bunch of affirmations that she had made into a song. So um I found that music therapy helped me a lot whenever I was in pain, especially to this day. If you see me out and about, you'll usually see me wearing headphones.
00:01:41
Speaker
um Part of the CRPS is like an overstimuli issue as well. So yeah, that's my song. Nice. Well, I'll have to listen to it.
00:01:54
Speaker
It sounds like something we've talked about on on the podcast before, like a music blanket. Does that relate to you?
00:02:06
Speaker
i mean i wasn't on your podcast before, so... But but is that is that something that's comforting or is it more to stop the noise from outside?
00:02:21
Speaker
So it is comforting for me. A lot of times, like I said, I i use my headphones a lot because it stimulates an issue. and um And I have you know just songs in general that I have. and When I'm doing treatments, I'll use my headphones as well.
00:02:37
Speaker
um So overall, yeah, i I feel like music is therapeutic to me. When when people have recommended like meditation, i can't usually turn my mind off, but I find music to be more therapeutic um for me, especially with pain.
00:02:51
Speaker
yeah Because a lot of times you still have to push through anyways and you can't really turn off all the noise around you. and that's kind of a way for me to drown out everything around me.
00:03:02
Speaker
Yeah, yeah. Okay.
CRPS Journey Begins
00:03:05
Speaker
So where should we start? CRPS or gastroparesis? Well, gastroparesis came from CRPS, so we could start with CRPS if you like.
00:03:15
Speaker
Yeah. Yeah. You want me to start with how I got it? Or where am I now? Yeah, let's let's start with how you discovered that you've got it and then and then we'll we'll take it from there.
00:03:31
Speaker
All right. If the world can see me, I'm smiling about it too. yeah I wasn't smiling when it was happening. So I had broke my foot back 2022 of February.
00:03:44
Speaker
they say actually most accidents happen, like most falls happen in your bathroom and they were not kidding. so I got a spinal fusion right at the end of December in my L4, L5,
00:04:00
Speaker
And i got neuropathy from that as well. Year prior, I had a spinal bifida and a tether and ah tethered cord release.
00:04:11
Speaker
So i was just having spinal issues anyways. And I fell in my bathroom a year later and ah broke my fifth metatarsal. And I just kept going to the doctor's office. It was just like burning and swollen and nothing was relieving it. When I mean burning, it was burning and cold. It was just, it was this, this feeling that I can't explain, but it just never went away. And it was the most horrible pain I had ever felt in my life. And. okay ah kept going to the podiatrist and he was like yeah you're fine It's healing up good. It's healing up fine. And I'm like, no, it's not. It's not fine.
00:04:47
Speaker
um and then there was like discoloring. um Like my foot looked like the zombie foot. Actually, at one point it was like blue. And then I was, yeah, i I was losing my nail. I lost my nails on my foot. I love my legs got all hairy. My leg itself got hairy.
00:05:06
Speaker
and I get laser hair removal. So I don't have that as an issue. Yeah. It kind of got like this silver look to it, my actual leg itself, when this was all going on. And the slightest bit of touch would bother me. So when I say touch, I mean like the wind blowing. So nothing could be on it.
00:05:24
Speaker
I couldn't wear a shoe. i couldn't wear anything.
Diagnosis Struggles and Ketamine Treatment
00:05:27
Speaker
And the MRI, like the CAT scans and stuff like that, everything showed that I was completely healed and it was not broken anymore, even though it felt broken.
00:05:35
Speaker
Yeah. ah i And when you said that the wind was bothering you, is it like, was it pain or was it that it was annoying? you know It was pain. It was absolute pain. So okay it was any kind of draft or you couldn't touch me.
00:05:55
Speaker
i took a shower, i would be crying. i couldn't sleep at night. I got less than a few hours of sleep. This was going on for months until I finally went to my internal medicine doctor.
00:06:07
Speaker
She was like, you know what, maybe you have CRPS. And I was like, what was that? So then I went to another doctor, um osteopath doctor, and then he said it might be CRPS.
00:06:20
Speaker
And he had mentioned something about ketamine at this time. and then I started going online and searching things because I work in research. And I searched all, all of like everything that you could do for it. And so such, you know, um and then I found a ah podiatrist down south that actually works with like CRPS and stuff. And so then I got it confirmed again.
00:06:41
Speaker
and then I made an appointment with this ketamine specialist on the west coast of Florida. So I wanted to make sure it wasn't all in my head. I needed all these additional doctors to tell me because I had the one doctor telling me, no, no, no, you're fine. And everything's okay.
00:06:55
Speaker
So wasn't until that was February. wasn't until like June when I actually got ah some sort of treatment to actually fix it because i couldnt like shower like i said i couldn't actually walk on that foot even though the foot foot was completely healed.
00:07:09
Speaker
um And then they started me on just like it was ketamine at the time, but everybody was like, oh my gosh, ketamine is the horse tranquilizer. Yeah.
00:07:21
Speaker
to a lot of family members that actually stopped talking to me. I don't talk to them to this day because they don't believe in the treatment. um They think it's all in my head You know, it's crazy.
00:07:32
Speaker
So I started with the treatment and it actually got me from not walking on my foot to kind of like a little bit walking on my foot. And then I started getting me infusions, which was very intense.
00:07:44
Speaker
You do a two week, four hours a day, every day. ketamine infusion. It was, it was a lot. It's very draining. It's not a fun process. It's like you're just getting high and you know what i mean? Like, so went through that somehow during all this stuff started the gastroparesis from it, but I was going with the ketamine treatments. I think I started at the two weeks and then went back for three weeks, another few days and another few weeks for three days and then it was i was going like every four weeks and then push it off to six weeks and then eight weeks it was going for i was pushing it off but i actually was able to walk my foot again but every time i got closer then i um started feeling pain and then i have it at home i have at home like medication and stuff like that too for uh for ketamine
00:08:37
Speaker
just to like get me by throughout the day. Cause I still wake up every day in pain, but not like enough to where I can't walk anymore. Like if you see me throughout the day and you've seen me at a conference, you'll usually see sometimes I walk a bit slower or usually after a few days at a conference, I'm kind of like,
00:08:54
Speaker
I'm done by that time and I might have to rest more or i start living and things like that. So yeah, it just like comes back. ah yeah there's a lot So what kind of pain is it? Is it just in your in your foot or is it elsewhere in your body?
CRPS and Gastroparesis Connection
00:09:11
Speaker
So CRPS starts at the affected limb, but it could move to other limbs or go throughout your body. It makes you oversensitive to pain in general. ah like any kind of,
00:09:23
Speaker
injections or shots that I get are more brutal or I'm also kind of like how to have a PTSD towards like anybody coming near me. So a lot of people that know me usually say like they they kind of warn me if they're going to come touch me. Everybody knows not to go by my left side because I'm kind of like a little leery just because it's my bad side.
00:09:44
Speaker
My left, i we believe that it's kind of like extended to or throughout my body because I have the gastroparesis now too. And my left, it's kind of like on my left shoulder as well. So it's a matter of how soon you treated it from when you and initially got it and what you did to treat it. There's like all different things you could do for it. You could do like spinal cord stimulators. You could do calmer therapy, which is kind of like, um,
00:10:08
Speaker
a TENS unit, but, but, but more advanced, you could do narcotics. You could do ketamine therapy, which is what I looked into, which happened to have the most results from it was because it resets your pain receptors.
00:10:22
Speaker
Yes. I'm in pain basically all the time, but it kind of gets, um, as long as I can keep the flares down, then I'm pretty good. But every once in a while I'll get a flare. If you follow me, you'll see that I get flares and, you know, and then things get bad. and So the gastroparesis is a paralyzation of your digestional track, which started to with the CRPS because again, it's all, all my nerves and everything. And so sometimes with my food, i will either get like where I look like I'm six months pregnant because I can't finish like my, I can't, it's not going anywhere, just super constipated or it's going the other way and I'm throwing up or yeah, it's going out.
00:11:02
Speaker
It's not fun. No. yeah So sometimes people are like, you know, i don't eat too much. I sometimes have to build a liquid diet for a bit or just like blend everything, know.
00:11:14
Speaker
And it's that, so is it that your muscles, like your intestines, muscles don't don't work? It's more like your your nerves.
00:11:28
Speaker
i don't know that it's your muscles. Yeah. It's a sensitivity to like touch temperatures. Yeah. Swelling, all good. um There's a deep, deep pain, and it could be like burning, but also cold.
00:11:42
Speaker
So the pain sensitivity scale, I want to say is like a 48 on the scale. So it's past amputation and stage cancer. Really? Wow. Yeah.
00:11:56
Speaker
But most people, like when they see me, they're like, nothing's wrong with you. You're fine. Because I'm usually always smiling, except for like once in a while, I'll like, Well, that's, that i mean, yeah. That's invisible illness though, right? Invisible conditions. Yeah. Invisible conditions.
00:12:13
Speaker
Which one of the reasons why I like this podcast is to to make people aware of them. How do you manage it then? Apart from the treatment, is there anything else you do to manage the pain and to be able to carry on doing your work? i mean, we met at a conference. I couldn't tell that you had anything.
00:12:36
Speaker
So how do you manage carrying on with life, essentially? Yeah. Oh, it's difficult. So during that whole time, obviously I was not managing it well at all. It was always hard to manage it without anything. If you would have like at that period, I was just like, I'm done. So they actually call it the suicide disease. I mean, a lot of people are like, I can't deal with this.
00:12:59
Speaker
i have a support group that I started with women in Florida that have it. There's about like 14 of us in there. But yeah, there's really, really bad days because being in pain constantly is not exciting, right?
00:13:13
Speaker
If you don't have a, like, if there's not a really a cure and but it's mostly, i think it's three times as likely if you're a woman than a man to have it. So if you're pain constantly, there's no cure.
00:13:27
Speaker
I mean, that could drive you crazy. But for me, I have my at-home treatment stuff. So I have medications like lodal, snotroxone, supplements. I do the ketamine therapy.
00:13:41
Speaker
Obviously, that's a big stigma. And I mean, even in the industry, I've talked to people that don't know about either ketamine or they don't know about CRPS. I, whenever I travel, I bring a lot of I bring a bag just of my like special things that I need. Everything has to be soft. So like fabrics to me are still to this day. I can't have anything that's scratchy. And when I say scratchy, it's probably normal for you, but for me, it's very uncomfortable. It's scratchy.
00:14:09
Speaker
have to like soft, soft fabric. So this is like kind of Spanx brand. It's very soft. It's like the arrow and which is like super, super soft. i have I sleep with a heating blanket every night just because it calms all my nerves down.
00:14:25
Speaker
When I'm in the cold, it's it's really, really painful for me. So the heat's better for me, but I have to have it cold like in the room. I bring with me my medications wherever I go.
00:14:39
Speaker
i sleep with silk sheets now. like Everything has to be, like I said, it all has to be soft. Yeah, it's just a lot of conditions to kind of be with me. And everyone's like, oh, my gosh, you bring so much stuff. But it's just like a lot of accommodating things. So even if I'm at the hospital, they, you know, I'll have like, you know, don't give me adhesive tape.
00:14:59
Speaker
ah You know, you have to do everything on the right side. You can't do anything on the left side. um You know. Heave like it's heating pads. I have to kind of have a certain amount of rest a night, at least ate out eight hours of sleep is my preferred thing. But like last night I went to bed at 1030, woke up at eight. So I'm a big sleeper and I just need that certain amount of time that I'm actually resting or my body's just calmed down. Because if I'm not getting that active light or that time where my legs are up and my body's just like sleeping, I'm not okay.
00:15:36
Speaker
um anytime I'm at the conferences afterwards, when I come back, I need like a few days just to decompress. And I usually go from like my bed to my couch. I won't even make it into my office because I just, I just can't do it because it's too much like on my feet all those days and stuff like that. So like once I've been on my feet for that much of time, if you see me, I can't have the, like the high shoes.
00:16:01
Speaker
A lot of times I'll have some guys say things to me like, oh you're not wearing this didn't think that they can say that to me. Really? really Yeah, yeah, I've had it happen. and I'm like, you know, they're like, oh, you look so cute. Like everything looks nice because if you see me, I wear all this stuff, right? But I can't wear the shoes because I can't walk in them. One, I'm afraid I'm going to fall or trip.
00:16:24
Speaker
And if I do that, then something else might happen somewhere else, right? And spread. And two, like it's going to hurt me. i actually bring the spray that kind of makes you go numb.
00:16:36
Speaker
I spray my li my foot with it. in my legs before I walk around too much. Yeah. So I'm like, I can't do all that just so I look that good because it's not, because I can't even walk in it.
00:16:50
Speaker
Yeah. Yeah, it's not their place to comment on that anyway. That shouldn't be an expectation. i know, I know. Yeah. can you Can we go back to like your left side? Yeah.
00:17:04
Speaker
Is it that it's like any touch or anything on your left side is really painful, or is it that it's almost a fear of of of it being painful?
00:17:17
Speaker
it's a little bit of both. It depends if it's flared or not flared. So like right now, all of this has kind of been bothering me and my, my left leg area has been bothering me as well. So it just depends on if it's flaring or not flaring. Yeah.
00:17:34
Speaker
Yeah. So there's couple of things that I'd like to go back on You talked about like being in pain constantly, not being fun, obviously.
00:17:47
Speaker
But how did you manage the mental health side of it? Well, at first I didn't. i I didn't at all, which was totally weird for me because I'm not like a depressed person. But when it all happened in the first few months when it was just like, this is not getting better and I don't know what to do and nobody's helping me and no doctors are listening to me and everybody's telling me this is fine and I'm being gaslit. Like what's going on? You know, so that was really difficult for me because if I know that I could, if I know that
00:18:23
Speaker
What it is and and how to get better, and then I'm fine. I'm focused and I can get better. But if I don't know what's wrong with me and I have somebody telling me that everything's fine and it's not fine, and I'm like, this is absolutely painful and like something's wrong, um and I'm also not getting sleep and I feel like a zombie, like I was getting four hours like so at that point I was literally crying all the time like and it was so much pain I remember my kids had to help me like in the bathroom go from the shower to like the toilet because I could not walk on like at all and I had the scooter even though that foot was healed so that was a very low point in my life lowest I've ever been in my life because I'm just like I'm not like that after that part
00:19:06
Speaker
I started the support group, so I thought that was helpful. And also talking about it helped me as well.
Mental Health and Support Systems
00:19:14
Speaker
And i go to like physical therapy.
00:19:18
Speaker
And so I did aqua therapy, talk there. With the ketamine therapy, when I first started, there wasn't anything. So that that place was very sterile. And it actually kind of came with lots of its own set of PTSD for me.
00:19:36
Speaker
So part of that therapy there was you had to wear a diaper. You couldn't get up to go to the bathroom. And I have chronic pelvic issues like with endo and uro and bowel water, everything stuff.
00:19:50
Speaker
So I was having a struggle there because i was obviously under you know, ketamine and I wanted to get up and go to the bathroom. And then I was being yelled at and told I can't get up. and And so I felt like I was in trouble every time I was going. And you can't tell somebody when they're on anesthesia that they can't do something.
00:20:11
Speaker
So it was a very, not a very good environment for me. And I finally just recently moved in January to a place that was local, which is a much better environment, includes talk therapy. And the setting itself is nice and inviting. it has like soft everything that I like and allows me to bring my essential oil and bring all of my things. Like even says you could bring a dog if you want to. Yeah. So yeah.
00:20:38
Speaker
I feel like now i'm actually addressing those things, whereas I couldn't. And even, like I said, that place before was kind of giving me anxiety itself. Yeah. Yeah. So, which you don't want when it's supposed to make you feel better.
00:20:54
Speaker
No, you don't want it. Those treatments were actually four hours away. And then I had to, uh, have a caregiver with me. So I had to trust other people to take me and be under their discretion, you know? And so that was also difficult for me.
00:21:11
Speaker
and then just recovering from that being gone for about a week and then recovering. And it would take like a month because it was just like a lot. And so now having it local, it's so much easier because I don't have to have a caregiver if I don't want one. ah And I just have, they have just everything there and it's about 20 minutes from my house.
00:21:30
Speaker
So. Good step forward then. Yeah. Yeah, I think so. But I think the mental health is is very important, which was why I was looking for. It just wasn't something that was covered with insurance.
00:21:45
Speaker
So this is out of pocket. wow And at the time, it wasn't something that was was affordable. It's still not a not affordable, if I'm being quite honest with you. ketamine is not covered under insurance, but it was covered at the other clinic because they charge for other things.
00:22:02
Speaker
um It is covered for mental health now. like FDA approved it. but But even like therapy itself, a lot of the places don't approve You know, it's, they're not, they don't take copays, right? It's cash. So it's, you get what you pay for, I guess, you know?
00:22:19
Speaker
Yeah. Which is another can of worms. But yeah, I've heard that dealing with insurance companies is not fun at all. No.
00:22:30
Speaker
In the US. Yeah. No, and i I pay a lot of money for my insurance. I have like a platinum plan and it's insane. And still it doesn't cover everything. oh I'm like I almost paid $2,000 a month for insurance and then I can't even see the doctors that I want to see.
00:22:47
Speaker
Wow. Wow. Yeah. ah Going back to to the to the stigma around ketamine. So what would you say to someone who questions you being prescribed ketamine?
00:23:03
Speaker
Well, I don't like confrontation, so probably wouldn't say too much. Well, I won't argue back, so you can try it on me. Well, I would say should... Actually, I recommend it to everybody. I'm like, you should try ketamine, you know? That's what I say. I'm like, it's really good for mental health, number one. And if you have chronic pain, I think it's great. Like, you should totally do it.
00:23:27
Speaker
Because, you know, like... It's, it resets everything. And honestly, it's completely changed my life. ah Before I used to not, I used to think being vulnerable was a sign of weakness.
00:23:40
Speaker
I used to not share like my pain or, or anything that was going on in my life because it wasn't just CRPS that I had before. It was endometriosis. um You know, I was dealing with that for years. And I just remember,
00:23:54
Speaker
while back with one of my partners, uh, saying like, you look sick, you shouldn't look like that. We're going to go see a client and you can't look like that. And i was like, okay, so I always pretended like I was fine. But then once I started telling clients what was actually going on with me, they were so so much more receptive and, and better client. Like we just had a better relationship because they knew it was working so hard for them.
00:24:21
Speaker
even under all these conditions. Yeah. You know what I mean? So, um, I think this whole ketamine stigma, I think a lot happened with the Matthew Perry.
00:24:33
Speaker
and don't know if you heard about that, but he also was being, he was using it as fun and using other drugs and things like that. um I actually had family members that sent me stuff while that was going on. And I was just like, seriously, ones that I didn't talk to.
00:24:49
Speaker
My parents were setting were coming with me some of my infusions and I had family members that didn't like that. They thought that they were just going on vacation. They thought that I didn't need help during infusions, but they didn't actually experience it. they didn't So they didn't know that going to infusions, there's no way that a person doing ketamine infusions can drive or walk like you, I mean you could walk, but you need somebody assisting you because that's being on an anesthesia. You just, you're not in your right headspace. You're just not. like a
00:25:24
Speaker
So I think that most people think this, it's this horse tranquilizer or this ah date rape get a gateway drug. You know what i mean? Like, and it's, it's just not. And I think it's a very powerful tool that you could use for mental health. And it it really made me when I first started doing the infusions really break down and kind of like being very vulnerable, like I said, and it's just changed things for the better as far as mentally, not even the pain, not even the pain that we're talking about. It helps with the pain, but also just mentally.
00:26:00
Speaker
I'm just obviously very open and talking now because I wouldn't otherwise be If you would have saw me a couple of years ago, I would have been like, yeah, i'm not telling you anything about me because you don't need to know.
00:26:11
Speaker
Yeah. Yeah. I found, I found exactly the same as you said, actually, that the the more you share with people, the the better the relationship, the better they understand you, the less you feel awkward if something happens or if you can't make a meeting, then they completely understand. And,
00:26:34
Speaker
I don't know if you agree with that, actually. Let me know what you think about that. But feel like society is is moving forward in that respect, that it's more understanding and vulnerabilit vulnerability is actually becoming a strength. Like being able to talk about yourself, to share how you feel is is a strength and is accepted now.
00:26:57
Speaker
Do you agree with that? Yeah, absolutely. Yeah, I totally agree with that. I think... I think it's with the like the new the new generation coming in in. You know what I mean? They're not going to put up with it.
00:27:10
Speaker
I think that's what's happening. um It's the old the older generation is kind of like moving out and ah where it was you were forced to have to deal with everything and just kind of chuck it up.
00:27:24
Speaker
and And now this younger generation is coming through and they're like, nope we're going to deal with our mental health. I mean, i'm I'm struggling with that too. Cause I'm like, Oh, we do, we do.
00:27:39
Speaker
Oh, okay. So, uh, you know, that's, it's kind of interesting to not to go from like, Oh, he's having to do everything because that's the only, the only way I ever knew was like, do everything, be everything only, you know? And that's part of the reason too, why i probably have all these chronic conditions from what I've read.
00:27:57
Speaker
Okay. We kind of give them to ourselves. Yeah. You kind of make everything worse, right? You flare up because you're so stressed out by doing all the things that you do. Yeah. Yeah.
Advocacy in Healthcare
00:28:10
Speaker
So is your link to the clinical industry, did that happen before CRPS or or is it ah that you decided to go in the clinical industry because of CRPS? Yes.
00:28:26
Speaker
So I've been in the clinical industry since 2012.
00:28:30
Speaker
I actually, previous to that, was working at like probation DUI. And then I just got into it kind of just at a site level back in 2012.
00:28:44
Speaker
And I've been in finance, you know, all that. Gosh, since then. um In 2015, I launched a company. And then now, just recently over the summer, I launched ClinGrow then collla trials and well Co-founded CollabTrials and then Clinical Research Justice League co-founded as well. So very busy.
00:29:12
Speaker
Don't have time for all and all the things, all the all the diseases, but... it's okay yeah Yeah, it sounds like you're not giving your yourself much room to rest, but at the same time, you don't seem to be complaining.
00:29:27
Speaker
No. Well, honestly too. So I think part of the thing is when you have these conditions, you should also keep yourself busy because I've seen that the people that are at home and not doing anything and not staying active, they're the ones that kind of get taken over by the disease and not getting better.
00:29:49
Speaker
So if you stay a little bit active, but not too active, there's line. then you you just have to keep your body moving because with this, if you like don't stay active, then you could, you're you your stuff could start to, forget what the word is, but basically like where your limb doesn't move.
00:30:08
Speaker
Okay. wow yeah So that was one of the concerns that I first had. Remember when I told you, when you asked me on my song, initially my limb was not moving. My toes were not wiggling. My foot was not, it wasn't able to move. I had to make it move. And it took lots of like fighting for months to get it to come back and like rehabbing it myself.
00:30:28
Speaker
So I was doing awkward therapy and then doing it again by myself every day, like every morning, every night with, you know, that song over and over and over. Well, a few others, but that one in particular and doing red light therapy and doing magnesium baths at home. Yeah. How long does that last? oh that was months. Yeah, that was months. And even still this, still to this day, like i still do the stretches and everything every day because,
00:30:58
Speaker
Like it doesn't, that foot doesn't, even that whole leg, that's my bad side. It doesn't move as good as the other side. So if you stay still, then that limb itself can actually get stuck in that position.
00:31:16
Speaker
I forgot the word of what it is. And then I get these bad spasms too. um and they're just like horrible. Absolutely horrible. In your foot. at them And get stuck.
00:31:28
Speaker
Oh yeah. Okay. Well, I don't know if you looked up any the pictures of it or anything, but yeah, you could, that whole limb could look pretty gross. Mine was pretty gross looking, but it's, it doesn't look like that anymore.
00:31:40
Speaker
I do still have like nail damage and yeah stuff like that, but. Going back to the to the clinical industry, do you have a different view or different appreciation on what we do as an industry with yourself experiencing chronic conditions and having to go to the hospital regularly?
00:32:04
Speaker
Do you think that gives you a different insight into what we do as an industry or not? Absolutely. Absolutely. I know you asked me back and then I, I think I have undergone. Okay. Number one, let's start with that.
00:32:20
Speaker
Other than that, i would say, Going back to when I got into research, I remember that I was having like, every time I, this was back before it had struck me, I had painful periods and they were just so horrible. And I looked like a zombie. And I remember one of the site directors telling me, Marianne, I think you have endometriosis. And at that time I had no idea what that was.
00:32:41
Speaker
And she was absolutely right. i had no idea. i was in my like early twenties. um And then it took me like another several years to actually get diagnosed and have many doctors gaslight me again and tell me, no there's absolutely no way you have it. It's all in your head.
00:32:56
Speaker
Okay. So that that was that fast forward to where I am now. The whole reason why I'm able to even get the care, which is not even the best care, if we're being honest, is because of what I know from clinical research and, and, and the doctors. And I guess I would say,
00:33:18
Speaker
what leverage I have or, you know, but my father was in the hospital recently and my parents were under the impression that you can't ask the doctor for certain things. You can't ask for medical records. Like they were just so naive to these things. And I was like, no, you have, the records are your information. You could tell the doctor you want this. You could ask for these certain things. So it was just like,
00:33:41
Speaker
how many other people are under this impression because they're not educated at all? And that's my problem that I have. And that's my why with research is because yes, I'm able to help my parents and I'm able to help myself, but we have to do better and help the society in general because How many other people are just like in COVID, right? how did How many people, all these old people that died because they weren't there at the hospital to help their parents, right?
00:34:10
Speaker
Because I've had to help my father while he was just there because otherwise they're going to trick him. But it's just like, that that's the thing that concerns me. People who aren't getting quality care because nobody's there to speak on their behalf or stand up for them.
00:34:24
Speaker
Well, yeah, and you're talking experts. You don't know yourself. Correct. You're at usually a very vulnerable point because when you go to the doctors, it's never for a good thing.
00:34:40
Speaker
So, yeah, but like everyone on the podcast tells the same thing, that you need to advocate for yourself. Otherwise, you don't get what you need. Yeah. and And sometimes you you need to push back, ask for second opinions.
00:34:58
Speaker
But it's not easy. it's not. And it's difficult to know if you're right to do that or not. It's not easy. And it really messes with your head because then you start to question, am I right or am I wrong? Right? Am I...
00:35:13
Speaker
is Is this right? Like, is this pain real or is this correct? To this date, I've been right about everything that I've diagnosed for myself or the people around me. Right. um I'm the undegreed doctor over here, but I'm like, I, I sometimes think like, am I going crazy? Like, is this real?
00:35:31
Speaker
No, because they'll literally tell you you're wrong. And same thing with my parents on that chart. I remember another occasion on the hospital chart. It said that my dad had a coloscopy bag.
00:35:43
Speaker
But he never had one. It literally said on his medical chart. you don't read your patient records?
00:35:51
Speaker
They didn't know. you know what mean? They just don't. It's nothing about them because they shouldn't have to. but know what I mean? It should already, it should be correct. Yeah.
00:36:02
Speaker
Sorry. I'm going to get all heated about it. but No, no, no. I'm with you. i with you. can't see how my face is right now. Yeah, yeah, yeah. Wow, wow.
00:36:13
Speaker
So much we've gone through. That's um really amazing. yeah, I've made so many, so much notes. I take notes during the, the, the discussion. And yeah, there's a lot. You took notes? Yes.
00:36:31
Speaker
ah have one last question for you, which I love asking everyone. What's your happy place? A place where you feel at peace? oh okay. If it's just totally generic, I actually love my couch. I just,
00:36:49
Speaker
I have a heating blanket there in the corner and it's like i just go chill there every night and and just like relax. I would say I wasn't working, but that's my time when I check up on all my LinkedIn that I didn't answer throughout the day. So I say I'm not working, but I'm really working because I've got to respond to everybody. And I have like this blue skylight. If anybody went to SOS, there was the light in the fort. And then i kind of have the essential oils diffusing and I just kind of chill.
00:37:18
Speaker
That's my normal, regular, happy place at home. Like I don't take too much. And I try to have, like, I'm done by working in the office around 7.30, so I could take my nighttime medicine and just relax.
00:37:31
Speaker
Chill on the couch. Chill on the couch. I didn't even like it, so, like, everything could calm down. Yeah, Nice. I think a lot of people will relate to that, having their happy place as a couch.
00:37:47
Speaker
yeah Well, the couch i actually recovered because it was it was just like regular microfiber, but I got like this velvet covering over it. And then I have like all these cozy pillows now and um it looks very boho in the living room and lots of plants. And I just wanted the vibe to be very soft. Like i said, yeah texture is really important to me. So shoes, fabric, clothing, everything has to be super soft because otherwise I don't like it.
00:38:14
Speaker
Nice. Well, i'm I'm very, very impressed with how much you must go through on a daily basis. And and you people can't see it, but you have a smile on your face constantly.
00:38:30
Speaker
I do have smile on my face constantly. And I really love helping people. So I... I that's actually why the whole volunteer thing started to I was like, yeah, i just want to help people. I want people who regardless of what they look like, or what their CV says, and want them to have opportunity because like, why not?
00:38:50
Speaker
Nobody's hungry, then people who have to put food on their table, and you don't know what people are going through. so yeah, I genuinely like to help people. Yeah, and you don't know what people are going through. You've just said that. And and I think the the I want everyone to to really be conscious of that because i think society would be much nicer if if people would be accepting of that.
00:39:17
Speaker
Oh, on something on that level I would like to say. i So I didn't know when it first happened. I got special accommodations at like when my foot was in the beginning thing for flying.
00:39:31
Speaker
And that was fine when I had the boot. But once the boot came off, I started, I had the cane for a long time. And just recently, probably over the last year, i got rid of the cane for flying, but I still get special accommodations for flying.
00:39:44
Speaker
And I'll have people that cut me off or the desk will kind of give me some grief sometimes. because of how I look. But I do the special accommodations because I don't take a wheelchair anymore because I can walk it and I need the walk before I get on the plane and sit for a long time because once I sit too long, I start getting the the spasms and everything else and my foot goes numb and it gets painful.
00:40:08
Speaker
I need the accommodations so I could get on board. i could sit up close to the front of the plane because with the gastroparesis, I might be throwing up or I might be, you know, I'll be in the bathroom a lot during the flight anyways. but also I need to bring all my stuff on board, unpack it for the flight. And I'm a lot slower than everybody else. And people don't like to wait for you, but people, like I said, they'll actually look at me and ask me a question.
00:40:32
Speaker
Whereas they wouldn't ask somebody that was older. And it's usually the old people that cut me off, which is kind of like, why? And it happens all the time. and I'm just like, i just I don't say anything. I'm just very nice about it. But just because of how I look,
00:40:49
Speaker
Nobody knows what I look right now like right now, except for you. But yeah, that happens to me constantly. And when I stay at a hotel, i also ask for special accommodations because I need my medication.
00:41:01
Speaker
So it's usually a fridge, a room close to the elevator, because most hotels are carpeted and I can't carry my luggage far. It's too heavy and it gets stuck. So close to the elevator is the best for me. Yeah.
00:41:13
Speaker
and a quiet room because um once I take ketamine, I could hear, it's like super senses, I don't know, but I could hear everything. in like a quiet room and close to the elevator.
00:41:26
Speaker
And usually with the handle bars in the shower, so I could grab just in case i lose myself. Yeah. lose myself like yeah yeah But there's all sorts of special accommodations for people. That's the thing I wanted to say during the whole rant was there's special accommodations for people that have any sort of disability, you know, and people don't are not aware of that.
00:41:52
Speaker
always. And I just wanted to mention that on this podcast that there are. Yeah, you're right. and and And also people may be aware and may think, oh yeah, but people will look at me. So maybe I shouldn't do it, but there shouldn't be a situation where they should feel bad about, but using what is available to, to feel better.
00:42:14
Speaker
Yeah. Thank you for mentioning it. Well, it's been a pleasure. Thanks a lot for taking the time. I always want everyone to listen to the podcast, obviously, because I'm passionate about it.
00:42:26
Speaker
But I think there's so much you've shared that should help people understand others better and be more accepting. that Yeah. thanks you so much yeah Thanks for having me. Appreciate it