Angela on MALS surgery, vascular compressions and more

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Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Angela. Angela, thank you so much for being here today.

Angela: Thank you so much for having me.

Jill Brook: Okay, so let's start out with some basics. What are the, what are the first few little factoids we should know about you?

Angela: Yeah great question. So yeah, so of course I'm Angela. I'm 36 years old. I live in Massachusetts. I grew up in Massachusetts as well. I would say for me, you know, things that I enjoy doing, I love reading, I love painting, hiking, spending time at the lake, you know, and the beach, and, and you know, I, ever since I got diagnosed with my chronic illnesses, I've, you know, had a passion about advocating for other chronic illness patients and sharing my journey to, you know, try to potentially help others.[00:01:00]

Jill Brook: That's great. Okay, so how would your friends or family describe your personality?

Angela: Great question. I think they would say that, you know, I'm a caring person. I'm, you know, fun. I'm organized, very dependable. I think those would probably be the main things that people would say about me.

Jill Brook: Okay, and if we force you to brag about yourself for a moment, what are you good at?

Angela: You know, so I work in human resources and, you know, I would say that I am good with communicating with people and, you know, kind of being that balance between, you know, people and the company.

Jill Brook: Oh, very cool. Okay. What's the most fun thing you've ever done in your whole life that you can tell us about?

Angela: I would say most fun thing for me is every year we would go on trips to Fort Lauderdale and that would be our, you know, week of [00:02:00] relaxation that we looked forward to. And even though we weren't doing a whole lot, that was so much fun for me because we got to unplug.

Jill Brook: Very nice. Okay, so I know you had alluded to the fact that you had multiple issues, and one of the reasons we got to know each other a little bit is that you had asked some really good questions for the podcast that we are going to ask some experts. But before we get into all that, can you give us a snapshot of what your life looked like before those set in, especially like in the last year or so before the chronic stuff arrived?

What were you doing? What were you up to?

Angela: Yeah, so I was doing, doing lots of, you know, long hikes. I would be traveling for, you know, both work and fun. I was flying on airplanes. I was, you know, going out to dinner weekly, I would say. You know, I have Mast Cell Activation Syndrome, so I was able to eat whatever I wanted. I didn't have to think about it.

[00:03:00] I spent a lot less time in doctor's offices and hospitals. I think I would be there for my annual and maybe one other time, you know, a year. I was able to, you know, work on lots of projects at once. I handled a lot of complex tasks. I spent my weekends like out and about doing things. So all of that has, you know, definitely significantly changed very much over the last, I would say, few years.

Jill Brook: You have a sailboat in your background. Were you a sailor?

Angela: No, it's interesting you ask about that. We actually just found a better place for that. So my grandfather made that for me when I was little. And he actually passed away early in life from cancer. And it was just always something, you know, he worked really hard on it. He spent so many hours working on it.

It has, you can see a little bit, it has like a little name plate on it and, you know, he, he just was [00:04:00] really great with woodworking, so I wanted to put it in a place that that I would see it more.

Jill Brook: Okay. That's really special. That's cool. Okay. So it sounds like you had this really on the go lifestyle. And then what happened?

Angela: So, I would say, you know, first signs that something was going wrong was in early 2017. I started having some abdominal pain, motility issues, you know, reactions to food, and I think at the time I didn't really, I didn't realize how much I was adapting my life and how much things were changing. Like, I we look back and sometimes I have, you know, I, I think about things and then we have these pictures of me sitting on the floor in our apartment with menus all around us.

There's all different, you know, dietary restriction books of me trying to figure out like, okay, if I just change over to this for a little bit, this will [00:05:00] help. And that went on for quite a bit. Everyone was kind of like, oh, you're fine. Like, it's just, this happens. And I was like, okay, this must just happen to people.

Whatever. And then in December of 2019, I was traveling for work, and I was on an airplane headed down to, I think it was Tennessee at the time, and I had this really scary episode on the plane where we took off and then all of a sudden my heart rate shot up to like 180, my watch was going off, I started like sweating through my clothes, like severe, severe chest pain.

I was dizzy and I was like, what is going on? I mean, immediately I was kind of like, I feel like I'm dying. Like, is this it? Am I going to have an emergency on a plane? Like, this is how it's gonna go. And you know, when we got to Tennessee, we landed and I was like, okay, like, I don't feel right, but I guess I just have to like, kind of push through what I'm there to do and then I'll go home.

And so then what [00:06:00] happened after that was we, I flew home. And I had the same episode as soon as we got up into the air again, and I was like, Oh my god, like twice? Like, what is going on? And I remember I was telling my boyfriend and my parents, I was like, I don't really know what happened. Like, this is weird.

And for a couple days after I got home, I still wasn't feeling well. So I went into my PCP and I was like, hey, like, this is weird. This has never happened before. And, you know, immediately they were like, you had a PE blood clot in the air. Like, you need to get to the ER. And I was like, okay. And, you know, we went into that ER visit and they were like, no, you're fine.

Everything's fine. Everything came back fine. So I was like, okay, that doesn't explain anything. So this went on for, this went on until like, I would say August of 2021, where things were [00:07:00] off and on, where I was having these, like, episodes that would come up, but then I would kind of move through them. And then in January of 2021, I got really sick at work, and it was really strange.

It was, like, sudden onset. I, it was like I had the flu, but to, like, the worst capacity that I've ever had it and I remember I had to go home and I was I had to jump in the shower because I couldn't regulate my temperature like no matter what I did. I was like putting blankets over myself And I was sick for like probably like two weeks and I remember thinking wow I've never been i've never been this sick in my life.

Like this is so strange. And so, from what I know now, I was having, you know, definitely some POTS symptoms, dysautonomia symptoms, my GI symptoms were kicking up and then I got the COVID vaccine in March and April of 2021. So, immediate with the COVID vaccine, onset allergic [00:08:00] reaction, where I had hives all around my lips.

You know, I had hives in my mouth and my throat. And I was like, what is happening to me? Like, what is going on? So they didn't stop. They had me have both vaccines because they were like, you gotta get both. It happened both times. They just kind of had had me do Benadryl and Benadryl and wait for a few days.

And you know, it was really, really strange. And then August of 2021 hits, and all of a sudden, in the middle of the night, I wake up. I don't have my vision. I lost it, like, temporarily. My heart rates through the roof.

Jill Brook: Wait, how long did you lose your, your vision?

Angela: It was probably, you know, it was probably for, like, two or three minutes that I, like, I couldn't see. And I was like, oh my gosh, what is, like, what is happening here? Like, it was, it was so scary. And, you know, my boyfriend called an ambulance because he was like, this is just something's not [00:09:00] right. Like, we've, we've been kind of having all these little things happening, but he was like, this is like an escalation point.

So the, you know, the ambulance got there, and my blood pressure was low, my heart rate was high they ended up taking me, and they brought me in, they ran all the tests. They were like, oh my God, everything's great. Everything looks normal. And then they ran my thyroid and my thyroid was a little bit elevated.

So of course they just honed in and they were like, that's what it is. They were like, Levothyroxine and you'll be on your way and you'll be fine.

Jill Brook: Can I just laugh for a second? Because in my journey to figure out what was going on, I had a moment where they found hypothyroid and I was so sure, and they so sure that it would solve all of my problems that I went out and my husband bought me a necklace that almost looked like a, like, you know, like a ribbon you would wear for winning a prize because we thought, I thought back in [00:10:00] 2007, which was like seven years before I got real answers.

Angela: Yep.

Jill Brook: Oh, it's done. It's just that, a little bit of Levothyroxine is going to fix everything. So anyway, I feel for you. Oh no. I feel like I know where this is going.

Angela: Yeah, I'm sure you do. Yeah, I'm sure you do, because I mean, I felt the same way as you, right? I was like, oh, finally, there's a marker that tells us something is going on. This must be it, and if I take this medication for this period of time, I'll be better. Well, as it turns out, it sent me into a thyroid storm.

And so it almost went like the opposite way and symptoms just started to kind of go out of control and I remember being in an urgent care and they took my TSH level again and the doctor came in and he was like, I'm so sorry. He's like, they shouldn't have had you on this medication. He said that they should have ran a second [00:11:00] TSH.

He was like, this is, he was like, now you're on the opposite end and we need to try to bring you back. And, you know, that was, that, that was kind of like my first experience of being like, oh, like, can I trust everyone I'm seeing? Like, that was kind of that first, you know, that first moment. And then, you know, from there, I would say that I was incredibly fortunate because I got into a cardiologist pretty quickly and I was able to get diagnosed with POTS November of 2021.

They had me do two tilt table tests, which I don't recommend doing more than 1 of those if you don't have to, but the 1st one, they just quickly did just a tilt. And then the 2nd one, they did the full autonomic testing, which gave them more info. So, you know, we got that diagnosis pretty quickly and, you know, but it didn't explain everything, you know, it didn't explain a lot of these other, you know, kind of other things that were happening.

[00:12:00] And I, my cardiologist at the time was like, I know there's more, but I don't even know where to send you or like, what to do. So then I kind of, you know, I, from there, I started to look around social media and I started to follow, you know, different, different social media. Different social media team, like, that were that were saying they were suffering from chronic illness and I was like, okay, let me start to look into POTS and then I started doing a lot of reading and that's where it kind of, like, led me down to the EDS, MCAS path where I was like,

I need to look into these because the symptoms of both of these that these other unexplained symptoms to a T and I was able to, you know, find the right doctors, knock down some doors to get in sooner. And then I got those diagnoses in early 2022. So, you know, we started to, you know, kind of put pieces together.

[00:13:00] We started to get, you know, medications on board and we started to kind of figure out different things to help kind of calm those symptoms down. But then there was still this overarching gastrointestinal symptoms that were becoming so debilitating that I couldn't eat, I couldn't sit up anymore when I was eating.

I had to only be, you know, eating when I was laying down. I was just suffering tremendously. And it got to a point where I was just on, you know, drinkable formula. And then we started talking about feeding tubes. And, you know, finally in 2023, I got diagnosed with vascular compressions. So median arcuate ligament syndrome, superior mesenteric artery syndrome, May Thurner syndrome, and Nutcracker syndrome.

And that was kind of a big pivotal point for me in some of this GI stuff that was going on. And I ended up making the decision to have open abdominal [00:14:00] surgery in October of 2023 for median arcuate ligament syndrome. And that was, that was quite the experience. You know, quite, quite a, quite a tough recovery.

It's almost like a full year recovery for you to like, really feel back to yourself.

Jill Brook: Oh wow. And did that help?

Angela: So, that helped, very specifically, the symptoms I was having from Median Arcuate Ligament Syndrome. So, it helped that.

Jill Brook: And should we just quickly maybe have you say what that is for people who are like, I know I've heard that somewhere, but I can't place it.

Angela: Yeah. Yeah. Yeah. Yeah. So Median Arcuate Ligament Syndrome. So that's, you know, really the Median Arcuate Ligament is it is in your stomach. It compresses the celiac artery and it causes like reduced blood flow through your abdominal organs. So, you know, food is struggling to get, you know, fully pushed through with that blood flow.

There's also a [00:15:00] neurogenic component as well, where, you know, nerves get damaged in what's called the celiac plexus. So there's, you know, on top of the compression of the artery, there's nerve damage and stuff like that.

Jill Brook: All right. So you had this quite major surgery. It took a year to heal and then, and then some GI symptoms were improved, but nothing else. Is that what I'm hearing?

Angela: Yeah, so I was able to, I'm able to eat, I'm able to, you know, sit up, sit up and eat, which is, was a huge accomplishment for me. You know, that chronic, sharp abdominal, like, upper abdominal pain has fully gone away for me, I would say, you know, losing weight, I was losing a lot of weight because I wasn't able to eat.

So, you know, I've been able to maintain weight. So, you know, a lot of that stuff has improved. But then unfortunately, earlier this year in February, they believe I had COVID [00:16:00] and that completely, you know, set me back from a POTS and MCAS standpoint. And then I, I like just a couple weeks ago, they officially diagnosed long COVID and ME CFS.

So I'm early stages in that path right now of kind of figuring, figuring all of that out.

Jill Brook: Wow. And, okay. And you had mentioned a couple of the other vascular compressions. I think you mentioned Nutcracker Syndrome, right? Do you want to say what that one is?

Angela: Yeah, so Nutcracker is the compression of your left renal vein. So in your kidney. And it's most commonly between the aorta and the superior mesenteric artery in your stomach. So, you know, that one, that one leads to a lot of left flank pain, so I still have that. Other things that it can lead to, like blood in your urine you know, pelvic congestion.

So that one, you know, [00:17:00] we, I have that diagnosis, but we are still trying to figure out, you know, what we want to do with next steps on that with the help of my providers.

Jill Brook: Yeah. And I know that's one where people do sometimes nothing, or sometimes even as, as big as, like, having their kidney taken out and put in somewhere else. And so that one can have some pretty serious treatment sometimes.

Angela: Yeah.

Jill Brook: That the kind of thing you're having to think about?

Angela: Yeah, so, you know, thinking about when I always look at these things, I'm trying to look at, like, best possible outcome for me. That's usually how I go into it of, like, what's the least risk of reoccurrence and stuff like that. So, things that are on my plate to think about what you were talking about, the renal

autotransplant. That's a very, very major surgery where, like you said, they take the kidney, they place it, I think it's just like a little bit higher [00:18:00] than your pelvis, and move it out from that that compression point. And I mean, that's a, it's a huge decision to make. So yeah, we, right now we're kind of keeping an eye on things and kind of keeping an eye on making sure things don't get worse.

I feel the flank pain every so often, just kind of depending on how my day is going where I'm like, still there, still there. But yeah, that one's a tough one for sure.

Jill Brook: May Thurner the final one that you had? And that's where the blood has difficulty getting up out of your lower extremities.

Angela: So that's compression of the left iliac vein which that leads to, you know, some reduced blood flow, and then you have your increased risk of like deep vein thrombosis in your leg and stuff like that. So one of the hard parts with that is, you know, sometimes with POTS or, you know, with [00:19:00] Dysautonomia, you already have some challenges with, you know, with blood flow and, you know, sometimes my leg does swell, or, you know, sometimes I have heaviness in my legs and you're, you're always kind of in that

mode of like, is this serious? Is, you know, what's happening to my leg enough to go to the ER to make sure that my May Thurner isn't acting up? So those are just always kind of, you know, those decisions that you're always making that make it so complex when you have so many of these conditions.

Jill Brook: Absolutely. And I think one of the questions that you had sent in that is such a good question, and I know I've thought about this too, is can MCAS make the compressions worse? Can the compressions make MCAS worse? And I'm not sure there's any data on this. Just from hearing some experts talk about it, my understanding is the answer is yes and yes, which is a giant bummer.

Angela: Sure is, I know. Yeah, I struggle [00:20:00] heavily with MCAS. My team, you know, my team has worked really hard, but I still take a lot of medicine to manage my MCAS at this stage and even that doesn't even cut it. So it's, it's a bummer because you're like, if these things do impact, you know, compressions or compressions do impact MCAS, it's, you know, you're kind of in this cycle.

Jill Brook: And I don't know about you, but I am also in the midst of trying to decide kind of what to do about pursuing compressions, and since my MCAS is also kind of bad, I am afraid of getting the MRI with a contrast just to get really good imaging of it. And I know that that's a whole nother rabbit hole you can go down.

And I've recently had this frustrating experience I've been talking to various experts and thinking, you know, okay, I already struggle with MCAS every single night. I have a hard time sleeping because of it. I [00:21:00] do worry that gadolinium contrast dye in my body would not be a welcome thing. I feel like where my life is right now, I can kind of like live with things.

I can't, it can't get any worse though. So I just mentally could not deal with it. So even though there's a promise of things getting maybe a lot better, if I went through with all this stuff and got stents and stuff, I'm scared that what if it doesn't help and now I've put some foreign things in my body all for nothing.

And the interesting thing for me is like, if you go and you, you look into, okay, well, what about contrast dye? Is contrast dye really a big deal for MCAS patients? The vast majority of the literature would say, nope, it's fine. It's no problem. I actually had a physician say to me just yesterday, it's like mother's milk.

But on the other hand, there are physicians out there who will say there is such a thing as, I think they call it SAGE symptoms associated with gadolinium exposure. And there's a whole patient community out there that swears that the gadolinium messed them up and a lot of their symptoms look like a lot of MCAS symptoms.

[00:22:00] And when I have asked a couple of physicians about this, they kind of write it off, but what comes to mind is, well, the MCAS patients were getting written off not so long ago. So if there's a community of people out there that are saying they have this problem, I am inclined to believe them. And I really struggle with this, and I am guessing you've thought about this more than I have, because you have more compressions.

Angela: Yeah, it's so, and what would have, it would have been between 22 and 23, I had, I think it was 15 CT scans with contrast.

Jill Brook: 15. Wow.

Angela: Because of all the ER visits, right? So they, because of how I was presenting, they are required to do a CT scan to make sure nothing more serious is going on, and then they would give me contrast and then things would get even worse.

And, you know, so there's, what I've learned with this is [00:23:00] there's contrast for CT scans, which is different, and then there's the gadolinium, and neither go well for me at all whatsoever. Both of them cause me challenges in the moment, right? So it's, I, I get hives, my throat starts to feel like it's closing and, but then, for me, the worst is after.

And a lot of my providers have a really hard time understanding that. They're like, what do you mean the worst is after? And it's like for two or three weeks after, I'm having all of these like weird pop up symptoms in almost every organ that, you know, that come up. And so the hospital system that I'm a part of here in Boston, they have actually a protocol ahead of

CT scan contrast, and gadolinium, that's, you know, steroids, Benadryl, and there's a 12 hour protocol, so if you need a scan, you got to be in there for 12 hours and wait, or there's a [00:24:00] 6 hour protocol. So, I had been at the 12 hour protocol for about a year and a half, and then now I'm at the six hour protocol.

So that does mean I think some of my medications are working. But it's, I still have the aftermath. You know, you just kind of have this aftermath of it. And then you also made another good point about surgery, right? So it's always, you know, nerve wracking going into surgery and the hospital that I chose for surgery actually is very well versed in MCAS and they had a whole MCAS protocol for me like down to their like their radiology team, their sedation team, like everyone had a really good MCAS protocol and I actually was extremely successful with MCAS symptoms.

Jill Brook: Oh, that's so great to hear.

Wonderful.

And it [00:25:00] sounds like even though you did maybe react to the contrast dyes or gadolinium it was not a permanent escalation in mast cell symptoms. It would go away after a couple weeks.

Angela: It would, yeah, it was a very temporary discomfort, but I know people that have had longer escalations of symptoms, or I know there are people that have said that there's been permanent challenges that they continue to have after. So, you know, it's hard. I think we always are in this place of how is it going to impact me?

Because we just don't know.

Jill Brook: Right. Right. And to be fair, I guess we should bring up the other side, which is, I think there's a lot of people who believe that if you improve the circulation by, you know, figuring some of this stuff out and doing whatever you need to do, stenting or embolizing or whatever, then the circulation gets better and then everything in your body works better and either MCAS symptoms might get a lot better.

So there's that possibility too. And I just wish there was a lot more [00:26:00] data on it.

Angela: Me too. Yeah, I'm a very, I read, I read the data, I read papers, and when I don't have some data in front of me, it just makes me nervous.

Jill Brook: Right? Right. Wow. Okay, so how functional are you now with everything that you know and all the help that you've received?

Angela: I, yeah, yeah, so I'm able to work. I would say that was kind of my first checkbox was to be able to get back to work and be able to function at a fairly decent capacity and, you know, I would say that that has improved significantly since surgery. And so I work from home four days a week and I go into the office one day a week right now and I'm able to do that.

Some of the ME CFS fatigue has been really getting me recently, so that's more of like a newer challenge. And I'm trying to actively work on pacing. I have been [00:27:00] using a different tool to, you know, kind of help myself figure out my energy envelope. So that's like a work in progress. But I would say from where I was, I remember like, I was using the Rollator, you know, at the beginning of my POTS diagnosis, trying to get into physical therapy.

And I remember being able to sit up for one minute was like, I did, I did great that day, you know, so I've come a really long way and most, you know, I would say most significant improvements coming after, you know, healing from MALS surgery.

Jill Brook: So what do you wish you had known sooner about all this?

Angela: Yeah, I, I wish I, I think I wish I knew how to advocate for myself better, sooner. I think it took me a little bit to realize how much I needed to advocate for myself and you know, how much follow up I really needed to do to be able to make, you know, make [00:28:00] a lot of headway into getting into the right providers and, you know, I had to, I always say this, I had to knock down like a lot of doors to get into the right providers and be really persistent.

And that's really hard when you don't feel well, like, that the last thing you want to do is to be on the phone calling and calling and following up, like, you just, you just want someone to follow up with you at that point. You're like, can't someone just do it? But, you know, I think one of the things too, that I really learned throughout the process is how to present my, how to understand who my providers are and how to present what's going on in a way that they digest it best.

I think at first, like, I, so many things were going on that I was just kind of like all over the place when I was presenting things. And I, when I go into a doctor's appointment, these days, I kind of have a more structured approach. And I wish I had that sooner, because I feel like a lot of people weren't taking me seriously at first.

I. You know, a [00:29:00] lot of people were saying to me, you know, this is typical of anxiety and, you know, there's a pandemic going on. Of course, you're anxious. You know, I remember my PCP who is not with me any longer. I fired him at that point, but I remember him sitting across from me saying, you know, hey, there, you're a woman, there's a lot of hormones and I was like...That

was probably my most mad moment. I feel like I like stormed out of there because I was just so, so upset. And then like another moment was when EMTs were getting called here and they were having to take me to the hospital. They were pulling my boyfriend aside and they were like, she's just anxious, like you need to really convince her that this is just anxiety and trying to talk him out of it.

And I just, you know, I know I'm not the only one that that's happened to and I know that this continues to happen to people and just breaks my heart because it's, you [00:30:00] know, it just feels like you're up against so much and you're up against so many like preconceived notions and stuff like that and it's just so hard to, you know, really get through and get your diagnosis.

Jill Brook: Wow. What is the best support or help people can give you these days?

Angela: I would say being understanding, you know, understanding that things might be unpredictable. Like, I never truly know how I'm going to wake up in the morning. I may wake up and be having a bad day and I might have to cancel something or I might have to do something that helps me preserve my energy a little bit more.

And I think just being understanding that I don't have, I don't have control.

Jill Brook: Has this experience changed your view of the healthcare system?

Angela: Oh, yes. I was just having this discussion earlier, because they referred me to a doctor earlier today, and I called, and, they were like, oh, it's a year wait. And I was like, [00:31:00] a year? One year? One full year? One, 365 more days with us without help? Seriously? And then they were like, oh, and there's another level, like, your primary care needs to present a case of why you should be seen by this doctor.

And it's like, what happened to the days where we just, like, called and got an appointment and, you know, got into the schedule? Like, why do we have to go through, like, all these hoops? But, you know, I was actually in the emergency room. I'll give you another example. I was in the emergency room last week and severe, you know, it was a severe pain situation.

They were concerned. It was like, you know, they, they weren't really sure. They were like, is it appendicitis? Is it ovarian torsion? And they fast tracked me and one image found a fibroid and they were like, oh, that's it. That's what's wrong. You need to follow up with your OBGYN. And, you know, again, didn't I was like, are you sure?

Like, I just want to make sure, like, do my bowels look okay? Like, is [00:32:00] everything okay? And they were like, yeah, everything's good. Follow up with your OB GYN. So I get to her, I follow up with her in person last week, and she was like, it's not me. Like, this isn't, like, this wouldn't be what's, you know, what the problem is.

She was like, but what I will say is you need to message your GI. And I was like, okay. So I messaged him and he was like, he was like, oh my gosh, he was like, for some reason, you know, your colon, your bowels, like they're completely full. Like we need to do he was like, did they not tell you this in the ER?

And it's like, how, why, why, why do we have to go in circles? Like, why can't someone just look at the imaging and say, hey, here's what's going on. But it kind of brings me to my bigger, you know, kind of my bigger thought about the healthcare system. It's incredibly broken. You know, we, we get thrown into this cycle of going into the ER, the ER [00:33:00] can't manage the complexities of what's going on with us, and then we call for a specialist appointment and there's a year or two wait.

And then you're in the ER a whole bunch of times, you know, until then, and you're trying to get in and I just, and I don't know what the overhaul is. I know it's, it's, it's huge that would, that would need to happen, but it's very, very difficult for chronic illness patients to get the help that they need.

I think the doctors, you know, on the other side of things, I think the doctors are overwhelmed. You know, I, I know they are, you know, when they come into the room, you can tell they're trying to like get in through as much as they can. But when you're a complex chronic illness patient, 15 to 20 minutes doesn't cut it.

That only scratches, you know, scratches the surface. I try, you know, I try not to get too disappointed. I try to, you know, figure out like, okay, what do I need to do next? Like, [00:34:00] how do I continue down my path? But I would say there's some days where I just get so discouraged, where I'm like, how are we going to get to the bottom of these symptoms?

How am I ever going to get all my providers to talk to each other and get on the same page? It's, it's so complicated.

Jill Brook: How do you cope? Do you have any tricks or things that help you?

Angela: You know, I would say, you know, journaling definitely journaling helps. I do enjoy walking. I can't go too long of distances, but you know, I would say I enjoy walking, being outdoors. My boyfriend is an incredible support system for me. Like we will bounce ideas off each other. Like he kind of knows when I'm feeling down about things and he'll try to, you know, kind of help pick me back up or I'll know when he's feeling down about things and I'll kind of do the same thing for him.

And but you know, I would say another big area that [00:35:00] helps me cope is the chronic illness community. Like, I've made so many amazing friends on social media that, you know, are navigating the same things, and I think just having those, you know, those people around me that understand what I'm going through, like, when I tell a story like that, they truly understand, like, what I'm saying, and the impact, and just having that support has been so helpful.

Jill Brook: Oh, that's great. That's great. A shout out to your boyfriend. Hooray for supportive people.

Angela: I know. So, yeah, I'm so grateful for him.

Jill Brook: Do you have any health related victories that you've seen in the last, you know, year or two where, you know, it was a victory for you?

Angela: Yeah, I think I would say my recovery from MALS surgery and everything I had to go through with that was a pretty big victory for me. I really, when you go into that, you don't really know how it's going to come [00:36:00] out or how you're going to heal or, you know, how everything's going to work. And I really followed the surgeon's instructions and, you know, kept to the schedule that he recommended.

I kept to my PT schedule and, you know, shout out to my physical therapist, because, every week I go in there, there's something different and there's something, you know, something, even during surgery, there's something more complex and she would pivot and say, Hey, this is now what we're going to move to.

And, you know, I would do it and I would be extremely regimented. So I feel like that was a huge victory for me. That was my first surgery ever too, in my life. That's what my surgeon was like, you're picking this one to be your first surgery. And I was like, guess so, but yeah, that was a, that was a really big, you know, I would say big win for me navigating the recovery of that.

Jill Brook: That's great. So are you up for a speed round where we lighten things up [00:37:00] a little and just ask you to say the first thing that comes to your mind?

Angela: Yeah, absolutely.

Jill Brook: Okay, what's your favorite way to get salt?

Angela: Ooh, quickly, I would say Vitasium Fast Chews. Those, those work really well for me.

Jill Brook: What's the drink that you find the most hydrating?

Angela: My Buoy Rescue Drops.

Jill Brook: What is your favorite time of the day and why?

Angela: Morning is the best time of day for me. I'm the most productive and have the most energy. I start to crash quickly when I start to come to lunchtime, so it's, for me, it's always been morning.

Jill Brook: Where is your favorite place to spend time?

Angela: In my comfortable chair with my heating pad and watching, watching TV and reading.

Jill Brook: What is one word that describes what it's like to live with chronic illness?

Angela: Unpredictable.

Jill Brook: What is some good advice you try to live by?

Angela: Yeah, [00:38:00] I think the best advice I try to live by is, you know, I I can only control as, you know, certain things and, you know, I think for me just living in the moment and trying to appreciate, you know, what's working and just kind of navigate what challenges come my way.

Jill Brook: What is something small or inexpensive that brings you comfort or joy?

Angela: Oh, my heating pad brings me a lot of comfort and joy.

Jill Brook: Who is somebody that you admire?

Angela: Oh, good question. So someone that I admire, Bella Brave is she was a 10 year old girl who was on social media. She was battling a few different conditions and she passed away earlier this year, but she is someone that, you know, had a big impact on me and just how she went about life. Her mom was sharing a lot of [00:39:00] things on social media and sharing a lot of their experiences, but you know, I think a lot of times, when things get really hard, I think about all that she had to go through, and I'm like, you know, if Bella could handle it, so can I.

And, yeah, and I continue to admire her, and I'm so grateful that her mom's continuing to share her legacy.

Jill Brook: Okay, what is a meal that really works for you?

Angela: Great question.

You know, I think I have it down. Below, I would say anything low histamine really works for me. One thing that's like a go to is ground turkey with steamed vegetables. That's something that is consistent for me that I don't have a problem.

Jill Brook: What is something that you're proud of?

Angela: Think I'm, I'm proud of my ability to advocate for myself and kind of push through all the barriers that have, you know, been put in my path. I think it's taught me, you know, it's definitely taught me a lot, but I think that would [00:40:00] be probably what I'm most proud of at this stage.

Jill Brook: What is the toughest thing about living with chronic illness?

Angela: I would say like the unpredictability of your symptoms, especially in a public setting, especially in a setting of people that may not fully understand what's going on and what's happening to you, I think that's, that can be challenging. Like, I think about, you know, like a holiday party. You know, at work, and, you know, no one knows that I might be sitting there, like, almost ready to pass out, and I think that's, you know, that's, that's challenging.

Jill Brook: Yeah. Have you ever had to sit or lie down in a weird place because of POTS? And if so, where's the weirdest?

Angela: Yeah, I'd say, hmm, I definitely have had to sit down in a lot of places. Probably weirdest, I think, was probably outdoors on a hike where I didn't, you know, I had to just, like, lay on the ground and put my feet up against, like, a tree or [00:41:00] something. And that's, that's, that's probably one of the weirder ones.

I feel like a store is kind of maybe, maybe not normal to others, but, you know, and I've had to in a store and the mall, like, just different situations like that, where I haven't had a place to sit.

Jill Brook: Okay, I just have a couple more questions. What do you wish more people understood about, I was going to call it the triad, but it's kind of like the triad plus, POTS, MCAS, Hypermobility, Vascular Compressions, ME CFS, whatever else is in the mix.

Angela: Yeah, I think I wish people knew more about how complex our day to day is. And I think I also wish people knew that, you know, we don't always start with the same energy envelope every day. So, it all depends on, you know, what's happened to the night before, how much sleep we got, what our heart rate variability might have gotten down to.

So, and you know, I [00:42:00] may wake up one, one day and have a ton of energy and be ready to do something, or I may wake up the next day and be having a bad day and have to cancel everything. And I think I wish more people knew about that, that, you know, I, I sometimes I'm like, I'm not, I'm not trying to make excuses or anything like that.

Like, my body really isn't cooperating today. Like, I can't get it to go.

Jill Brook: Is there anything you'd like to say to your fellow patients who are listening?

Angela: Yeah, I would say, you know, keep advocating for yourself, you know, continue to do your research alongside working with your providers. You know, listen to podcasts and you know, listen to, follow people on social media that are, you know, reliable sources for you to get information from and just try to get as much information as you can so that when you are kind of heading into these appointments, you [00:43:00] are armed with all sorts of information and can kind of have those discussions with your doctors. You know, find any available support groups and connect with other people too that, you know, are experiencing the same, you know, chronic illnesses because I feel like that connection, you know, really does help, you know, really does help you as you're navigating through.

Jill Brook: And last question, why did you decide to let us share your story today?

Angela: Yeah, I think, you know, I have been following Standing Up to POTS since the beginning of my journey. There were, you know, a lot of, you know, podcasts at the beginning of my journey that really helped me. Actually, one of them had sent me out to Dr. Afrin for MCAS evaluation, and I would have never known about that, or never knew about his expertise.

You know, I think for me, I'm like, okay, what if someone's listening to [00:44:00] this and I've shared something that can help them? And I think that's always, you know, what I'm trying to do, even when I'm on my social media channels as well. I'm, I'm trying to share because I, I know how much I got helped from other people's stories.

So I'm like, how can I give back and, you know, try to help them along their journey or cut their time down to diagnosis or treatment or something like that.

Jill Brook: Oh, that's great. And we can put them in the show notes if you're up for it. But what are your social media handles that people could follow you at?

Angela: Yeah, so on Instagram, TikTok, and Facebook. I am Positivity POTS EDS MCAS so I can definitely share that with you.

Jill Brook: Fantastic. Well, Angela, thank you so much for sharing your story and your insights with us. I know everybody appreciates it so much, and we are all just wishing you only good surprises in the future for healing and everything else.

Angela: Thank you so much. Thank you so [00:45:00] much for having me. I really, you know, really appreciate the opportunity to be able to share.

Jill Brook: Oh, it's our pleasure. Okay, listeners, I hope you enjoyed today's conversation. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone, and please join us again soon.