Episode 38 - POTS Diaries with Sandy

00:01 Announcer: This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:23 Jill (Host): Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your hypervigilant host and today we have an episode of The POTS Diaries where we get to know someone in the POTS community and hear their story. Today, we're speaking with Sandy, who I've never met before, but I know she's very patient because she's been sitting here while I dealt with some technical issues, and she has been so friendly and kind, and she's kind enough to share her story today. So Sandy, thank you for joining us.

00:53 Sandy (Guest): Thanks for having me, Jill. This is an honor.

00:57 Jill (Host): So can we just start off with some basics about you and hear what is your age? Where do you live and anything else that is kind of some super basics about you?

01:09 Sandy (Guest): Well, I'm 55 years old. I live in upstate New York, and I work in the healthcare field.

01:17 Jill (Host): Oh, can you tell us anymore about that? What you do in the healthcare field?

01:23 Sandy (Guest): I've been doing home care physical therapy for approximately 11 well, 10 years to when I was diagnosed. I was doing home care, physical therapy and prior to that I was doing therapy in a clinic setting and prior to that I was a stay at home mom.

01:40 Jill (Host): So if we were to ask your family or friends to describe your personality, what would they say about you?

01:48 Sandy (Guest): Prior to POTS?

01:50 Jill (Host): Sure.

01:52 Sandy (Guest): They would say that I was adventurous. I had a positive energy, outgoing, very strong willed. I was the event organizer for my friends and family, and I'd say that I always liked to make people laugh.

02:09 Jill (Host): In a minute I'm going to ask you about what they'd say about your personality after POTS. But first of all, can you just give us more of a snapshot of your life before any sign of POTS? What were you doing? What was going on? What was daily life like for you?

02:31 Sandy (Guest): I was a social butterfly. I disliked any idle time. My kids – they're not couch potatoes, and I think that's because I just always had them on the go. I did not like just to be home doing nothing. I didn't like to be plopped in front of a TV. I loved shopping, shopping, shopping, hanging out with my friends, just just having fun, and I could go 100%. I was the Energizer Bunny.

02:59 Jill (Host): So what was your first sign that something was wrong?

03:03 Sandy (Guest): Well, I was diagnosed with mono and I never really got over the mono. I seemed to have this lagging fatigue. It just followed me everywhere I went and if we were going to be up late at night, I would have to take a nap in order to get through that late evening. So I think that's how it all really started. And then from there it progressed to where, if I was sick with a cold or a flu or any type of illness, I got really lightheaded. So those are the first signs that I did not know, I'd made excuses for them at the time, and then, as years progressed, they just seemed to intensify.

03:42 Jill (Host): Did you find help right away or what was your journey like getting a diagnosis? Did you find a doctor who knew what POTS was, knew to do a tilt test? Was it easy or what did your diagnostic situation look like?

03:59 Sandy (Guest): Well compared to other POTS patients, I would say that my diagnosis was easy, but for me it was not easy. I was hospitalized and the doctors there, including a cardiologist, told my family and myself that I was crazy, I was making it up, and that was really hard to swallow, 'cause then I started questioning, am I making this up? What's wrong with me? Shortly after that, I did have somebody that reached out to me and said, hey, we know you know this - up at Mass General [Transcriber’s note: Massachusetts General Hospital] where - reach out to them and they might be able to help you. And I did and the doctor there had told me, “Have you had a tilt table test?” First time I'd heard of it. I said no, they said, “Get one.” So, I got one here at home. The cardiologist that performed it is the doctor at the hospital that had told me that I was kind of crazy. He's the one that ended up diagnosing me with the POTS from the tilt table test.

04:59 Jill (Host): Can you talk a little bit more about that experience where you mentioned you're in the hospital, your doctor tells you and your husband that you're just making this all up? I mean, do you mind talking about that a little more, like how that went down and how that felt? Like, I think I would have lost my mind. What was that like?

05:23 Sandy (Guest): When I was hospitalized, they actually had me be in-patient because they said that I had a elevated D-Dimer, which means that you have a blood clot. So that was why I got admitted to the hospital to begin with. It ended up not being a blood clot, and then there were the symptoms of - I had tachycardia, I had orthostatic hypotension - but the cardiologist did not want to be, for lack of a better word, he didn't want to be bothered with that as a diagnosis. So, all the other diagnostic testing that was that they ran, I mean, echocardiograms, EKG's. They sent me down for different types of ultrasounds and just every diagnostic testing that you can imagine, and everything came back saying that I was fine. So, at that point I knew how I felt and I couldn't get that across to the doctor, maybe because I wasn't feeling so hot. And they did do a orthostatic testing with my blood pressure. I was in supine and they sat me up and then they stood me up. It was crazy how my blood pressure dropped, but the cardiologist wasn't concerned by that at all. And at the time they weren't checking my heart rate when they were doing the blood pressure testing. So they didn't get an indication as to what my heart rate was.

06:52 Jill (Host): Oh, so, they were so close! They were so close.

06:55 Sandy (Guest): But when I had the Tilt Table test, the cardiologist just basically said, “I don't treat POTS,” when he did diagnose me. So he knew about it, but he just says, “I don't treat it,” so I don't know what he would have done for me anyway, when I was in the hospital.

07:10 Jill (Host): So, don't answer this if you don't want to, but can I ask how your husband and family reacted when they were told that you were imagining all of this?

07:21 Sandy (Guest): Well, my daughter was actually in the hospital room with me when the psych center of a local hospital came to my room and said that, “We were sent here from your doctor to do a psych eval.” So we basically told them to leave because we knew that I wasn't crazy, but it does make you think that you're crazy - that the medical professionals are saying that you are and that you're making this up.

07:51 Jill (Host): I hate hearing that because I think you're right and that was my experience as well is that even if you know you're not crazy, it's like, it's at the very least it makes you think, “Uh oh, I'm not allowed to speak up about symptoms unless they're a lot worse than this.” It makes you feel like you have to be a death door before you're allowed to ask for some help and some attention, 'cause otherwise they're just going to write it off. And you had been in the healthcare field - did this surprise you?

08:22 Sandy (Guest): Well, I had never heard of POTS in all my years, even in when I went to school I did not hear of POTS. And I find that that's a common theme, at least locally, that when I tell the medical field that I have POTS, they either shake their head and act like they know what it is, or they say what is it? So it's a theme. People don't know what it is, at least here locally.

08:48 Jill (Host): A few minutes ago, when I asked how your family would describe your personality, you had made a distinction about before POTS versus after POTS. Can I ask what the after POTS answer is to that?

09:02 Sandy (Guest): Well, I don't have any drive to do the things that I did before. So spending time with friends and even family is not enjoyable. I find it almost burdensome - maybe to them, or maybe to me, because I don't know if I say, “Yes, let's go do this,” I don't know what's what position I'm going to be in. How am I going to be physically? How are my POTS symptoms going to be? I really, I don't know, so I've pulled back a lot and I spend most of my time at home where it's safe.

09:41 Jill (Host): Right and you had mentioned that you previously were the event planner, right? So does that mean that the people around you are doing less stuff too, because you're not there to make everything happen?

09:55 Sandy (Guest): I would say yes. I have some girls from high school that we used to do a monthly - what we called girls night out - and that doesn't occur anymore. So, and then the people that I, you know, would work with or I would call people say, “Hey, let's go here, let's go do this. You want to go away for the weekend?” It doesn't happen.

10:14 Jill (Host): So, at the time we were recording this, it's a couple months until the big holidays, and I know that for me, I completely understand that feeling you're talking about and my feeling around the holidays is, oh geez, if I do schedule something, there's a good chance I'll feel horrible and it'll feel like the most miserable thing in the world to have to follow through on whatever I plan. And if I don't plan something and I feel good, then I'll feel really lonely and lame on Christmas Day when I'm doing the, you know, “safe thing” which is basically don't do anything. Now, I guess you are in your first couple years of this, but do the holidays feel like a big challenge with POTS?

11:06 Sandy (Guest): Well, last year the holidays was COVID, so it was easy to get away with it because everybody was home. This year - you know, it weighs on my mind, but my husband has told me time and time again that if if we go, or whatever it is - a dinner or celebration and I don't feel well, we'll go home or we'll - “We can find a place for you to lay down.” Whatever it is that I need, I would rather have you there than not there at all. So, he helps take some of that burden away from how I'm feeling, and I know that my family will be understanding, and that's who you spend the holidays with is your family. So I don't think it'll be as much of a weight on my shoulders as it is when you make plans with say, non-family members.

11:54 Jill (Host): Oh good, I'm so happy to hear you have supportive family. So, can I ask what are your worst symptoms?

12:02 Sandy (Guest): Oh, fatigue. The fatigue that I have and how I can hit a brick wall without notice. I could be feeling fine, or maybe just a little sluggish, and then I hit that wall and it's it just knocks me out. So I would say fatigue is the top of my issue, absolutely. Lightheadedness, dizziness, that would be second on the list.

12:30 Jill (Host): When does the fatigue tend to hit? You said it feels like you hit a wall, like is that something that only happens if you're doing something pretty strenuous? Or does it hit you at the grocery store? Or might it hit you in the middle of this podcast? How predictable or not, is it?

12:48 Sandy (Guest): It's very unpredictable. I haven't been to the grocery store since my diagnosis. Well, I shouldn't say I haven't been - I may run in with my husband for something quick just to test myself, but I typically don't go to the grocery store. But it can happen at any time, it's unpredictable. I don't know when it's going to happen. I do know that if I overexert myself, it tends to come on stronger, for sure. I do work in a very accommodated position for four to five hours, three days a week, and those three days that I do that work, I'm done for for the rest of the day.

13:29 Jill (Host): Are you able to still enjoy the work that you do?

13:32 Sandy (Guest): So I'm still helping out the rehab team at my position, it's just in a completely different role. So, I do enjoy it and I'm thankful that my employer has given me this accommodation because I think that working is is good for my mental, instead of just being home all day.

13:52 Jill (Host): So, what's the biggest life change that you've had to make because of POTS?

13:58 Sandy (Guest): The biggest – well, obviously it's been work because I I can't function in my role as as a physical therapist assistant. And I'd have to say giving up fun activities, being with my friends, that's been hard, too.

14:13 Jill (Host): Do you think that having a chronic illness has changed you as a person?

14:19 Sandy (Guest): Absolutely. 100%.

14:23 Jill (Host): Now, I know you are still a little bit new to finding good doctors that really know POTS and can help, right? Do you feel like there's some hope that if you find the right help that you can improve?

14:37 Sandy (Guest): I do have hope. I do go out of out of town - I go down to Maryland to Johns Hopkins, and I've had two visits there and with more to come. In fact, I go in a couple of weeks, and I'm hopeful because that is what they specialize in with the doctor that I am seeing there. So, I have to be hopeful that there there will be changes in my condition. I'm hopeful.

15:06 Jill (Host): Have you tried a lot of different things already to see if they help your symptoms?

15:13 Sandy (Guest): I feel that we have tried - and I say we because my husband is at my side 100% of the time - we have tried medications. We have tried diet because I have horrible insomnia. So, we tried some different types of sleep therapy, as they call it. I have tried exercise, I - gosh I just I just feel like there's there's a million things that we have tried and so far we haven't found that that winning combination yet.

15:46 Jill (Host): Can I ask you more about your insomnia and your difficulty sleeping? I guess I kind of have a couple questions, like what does your insomnia look like and feel like? And what do you do as you're laying there?

16:01 Sandy (Guest): My insomnia - and that's another thing that I've had since I had the mono - has been sleep issues, disturbances, and what happens is I do take a sleeping pill every night. I've been on that for 15 years and it's just to help me fall asleep. But, I wake up after 2-3 hours and then I could be wide awake. I am wired. It's like - I don't drink coffee and I've never been a coffee drinker - but I feel like that's what it would, I would feel like if I drank coffee. I'm just wide awake, I could do anything at 1:00 in the morning. So, it's challenging because then it catches up with me at maybe 5:00-6:00 in the morning. And then you're trying to get some sleep, or maybe you have to go to work or a doctor's appointment, and it it just really plays havoc on your life. What we've tried has been, you know, changing my meals - when I eat last. We've tried some super foods that they say help with sleep. What I've done in the middle of the night when I can't sleep is I've actually listened to podcasts, such as yours. That's what I find can maybe relax me, but it doesn't put me back to sleep.

17:20 Jill (Host): So you are actually awake from 1:00ish to 5:00ish? Is that what you're saying?

17:26 Sandy (Guest): Yes, 1:00 to 6:00, could be 2:00 to 6:00. It it varies, but anywhere between usually 1:00 and 3:00 AM is when I am waking up for no apparent reason and I could be so tired that when it's bedtime I could just be drop dead tired and I can have a problem falling asleep. And I've been told that it could be from some adrenal insufficiency that I'm suffering from and just that norepinephrine release. So there's just a lot of variables going on that we're still trying to figure out and how to best take care of them.

18:06 Jill (Host): What does a good day look like for you these days? Within your range of bad days to good days, what does a good one look like? How much energy do you get to have? How much sleep do you get to have?

18:20 Sandy (Guest): Today, it's Sunday. And today was a good day. I had a good night's sleep that was a beautiful thing to wake up to was a good night's sleep. So that means that I wasn't up at 1:00 or 2:00 AM and up until 5:00 or 6:00. It means that I - my sleep might have been fragmented - but at least I was able to sleep throughout the night. We went to church. We went out to lunch. And then part of my therapy that I am to do is I'm to walk at least five minutes a day. So after doing the church and running an errand, I didn't go in to the store on the errand, but we ran an errand and went to lunch. And then I went and walked for 12 minutes. Now, after that I hit that brick wall. I was done. I could barely get back to our vehicle. My husband was helping me get there, but I did all of that. That's a good day for me, and then the rest of the day has been spent on the couch. So that's a good day.

19:21 Jill (Host): Yeah, So what is the best type of help or support that people could give you right now?

19:29 Sandy (Guest): Them really understanding POTS. They have to understand that it's invisible. I may look good to them, but I may not be feeling good. That every day is a struggle in one way or another, with with POTS, even on a good day, which I don't take for granted on my good days. But every day there is a struggle of some sort, at least for me, at this point of my journey of POTS. They really just need to understand and educate about what the autonomic nervous system does for you, because there's so many things that I don't have that other people have with POTS that it affects, so it's it's a large - it's a large bubble that POTS patients have to deal with, and I wish people would take the time to learn it, understand it, educate themselves on it, be aware of it, have knowledge. Knowledge is power, they say.

20:30 Jill (Host): Yeah, it sounds like your husband has been very supportive. Do you wanna tell us a little about him and how he helps you? Or how this has affected him or anything? I love hearing about supportive family member 'cause I know not everybody has that, and so I kind of want to say, Yay! You know, thank you nice supportive people out there. Do you want to tell us about yours?

20:59 Sandy (Guest): Absolutely. People say that their spouse is their rock. My husband is my rock and more. I could never be where I am today if I didn't have him. He understands. He helps. He is very protective. He understands, he's as educated as I am. He takes me to appointments. He goes in with me, he drives me the 4 1/2 hours down to my appointments for POTS. He is just there every second of every day. I can't say that he doesn't get frustrated not at - he doesn't get frustrated at me, he just gets frustrated with what I'm going through. So that's where it's hard on him. But his love and support - I can't even begin to explain what he does for me day in and day out, and I wouldn't be where I am without him. That's just that.

22:08 Jill (Host): OK. So, I just have to say first of all - love him. Don't know him, love him. But how long have you been married?

22:16 Sandy (Guest): We've been married for - it was just 20 years this month.

22:20 Jill (Host): Congratulations! So, my next question is what gives you the strength to deal with all this? Do you have any things that help you cope?

22:31 Sandy (Guest): I do see a medical social worker, and that's because I've had a lot of a lot of problems dealing with having a chronic illness, and how it has changed my life and how it's a grieving process because I've lost that healthy part of me. And I have to learn how to live with the new me. So, my best coping method is what the tools that she has given me to be able to get through this time. It's fairly new that I started seeing her, but I started to get depressed and I started to feel why? Why was I here? Why am I dealing with this? So there was a lot of "whys”. And she's she's helping me. Her tools have been exceptional. I recommend a medical social worker or any type of help that you can get for your mental aspect of having a chronic illness, not just POTS.

23:29 Jill (Host): Yeah, thank you for sharing that 'cause I think that's so important. Is there anything that you know now about living with POTS that you wish you had known sooner?

23:41 Sandy (Guest): All of it. Everything that I have learned. It's it's a learning process right now. It will continue to be a learning process and I think it's hard for people to actually understand what it's like to live with POTS or chronic illness until you are in that mode.

24:01 Jill (Host): Has anything at all positive come from this experience? Is there any silver lining whatsoever?

24:10 Sandy (Guest): I guess you could say that I feel that I've been given this this road, this journey for a reason. So I need to find the positive in that road, in that journey. After a long time of thinking about it, that I need to do my part to educate, to get the word out there, to let people know what it is, and what they can do as just the general public to to help. I want to get awareness to the health care facilities locally. So, if I can make a difference and help people, then I feel that that's what my journey is going to be about. And I've started that already. I've had posts on Facebook and I've had people that have reached out to me and said, “Hey, my gosh, my friend, daughter just got diagnosed,” or “My niece just got diagnosed. Do you mind if I had them call you?” So I've had phone conversations with people that are new to POTS. And it's it's nice just to converse with somebody else, and it validates what they're feeling, it validates what I'm feeling. Make that that awareness out there so that people can understand, and not just about POTS- just in general about people that have any type of chronic illness and the invisible ones because you can't see what's wrong with them. I feel that that is what POTS is going to do for me is it's going to make me want to educate and get the word out there. So, I hope as I start to feel better and stronger, that that will grow even more than what I'm doing now.

25:58 Jill (Host): That is such a beautiful and generous and mature and evolved answer. I really admire that. As for what a silver lining is, that's beautiful. And thank you in advance for all the awareness raising. So, are you up for doing what we call the speed round where you just say the first answer that comes to your mind?

26:26 Sandy (Guest): Sure.

26:27 Jill (Host): And we know your brain is not getting as much circulation or as much oxygen as it's supposed to, and that's kind of part of the fun. But here we go. What is your favorite way to get salt?

26:40 Sandy (Guest): Well, actually I just just figured this out recently. I have chicken broth every day in the morning and I add a teaspoon of salt to the chicken broth so that I get my allotment, and then anything after that is is bonus.

26:55 Jill (Host): Very efficient. OK. What is the drink that you find the most hydrating?

27:02 Sandy (Guest): Water. Always and forever.

27:05 Jill (Host): What is your favorite time of day and why?

27:10 Jill (Host): Breakfast, 'cause I love breakfast. So as soon as I get up and can have breakfast, that's my favorite time of the day.

27:18 Jill (Host): How many doctors do you think you have seen for POTS?

27:23 Sandy (Guest): Probably 10.

27:25 Jill (Host): How many other POTS patients have you ever met in the flesh?

27:30 Sandy (Guest): Zero.

27:31 Jill (Host): What is one word or one phrase that describes what it's like living with a chronic illness?

27:41 Sandy (Guest): Relentless.

27:42 Jill (Host): Oh good one. What is a piece of good advice someone ever gave you?

27:49 Sandy (Guest): Uh, surround yourself with people who are understanding.

27:54 Jill (Host): What is something small or inexpensive that brings you comfort or joy?

28:01 Sandy (Guest): Oh, a video or a photo of my new grandson.

28:05 Jill (Host): Who is someone that you admire?

28:08 Sandy (Guest): My husband.

28:10 Jill (Host): What is something that you're proud of?

28:13 Sandy (Guest): I'm proud that every morning I can get up and put 2 feet on the ground.

28:19 Jill (Host): What is the toughest thing about POTS?

28:24 Sandy (Guest): Learning how to live with it.

28:26 Jill (Host): What are you good at?

28:29 Sandy (Guest): Being a mom.

28:31 Jill (Host): What is a gift that you would have sent to every POTS patient if you were Oprah and had infinite funds?

28:40 Sandy (Guest): A cure.

28:42 Jill (Host): [Laughs] Right? What is something you are grateful for?

28:49 Sandy (Guest): My family who support me.

28:52 Jill (Host): And last speed question people might suspect you’re a POTSie when...

28:59 Sandy (Guest): When I'm at the grocery store with my husband and I have to sit on the edge of the cooler of the in the grocery store.

29:05 Jill (Host): If you ever do meet a POTS patient face to face, it might be there, right? You meet someone else sitting on the cooler. OK, I just have a couple more questions. What do you wish more people knew about POTS?

29:19 Sandy (Guest): I think I've touched on it already, that it is invisible. Never judge a book by its cover. How taxing it is on on you daily, or at least I - I mean, it is on me. When I say I can't, believe me, I can't. I can have never a full tank, but I can have a tank of gas and it can be empty in a matter of minutes, hours - I don't know. And how much effort I put into living every single day. How much effort it takes for me to get through a day. That's what I would like people to know.

30:00 Jill (Host): I feel like you are so eloquent about describing some of these things that I am excited that you feel like your calling is to help spread awareness, because you are really good at it. OK, so is there anything that you would like to say to your fellow POTS patients who might be out there listening?

30:25 Sandy (Guest): Yeah, I would say surround yourself with people who understand because it's tough. It is tough. You're going to have down hours. You're going to have down days. You're going to have down weeks. You may even have a down month. If you surround yourself with people that understand it can, they will make it easier for you. You need to be your own advocate, especially in the healthcare field, if you find that people don't know what it is. And if you can educate yourself on everything POTS, then you have all the information and that's going to make it easier for you in the long run.

31:01 Jill (Host): Beautifully said. Sandy, thank you so much for sharing your story and your insights with us. We really appreciate it and we hope your journey has only good surprises ahead. Ad hey, listeners, remember this is not medical, dental, spiritual, fashion, or menu advice. Consult your health care team about what's right for you, 'cause we're all so different. But please consider subscribing because it helps us get found by people like you. And thank you for tuning in. Remember, you're not alone, and please join us again soon.

31:38 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast And I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: if you would like a copy of this transcript or the transcript for any other episode of the POTScast, please email volunteer@standinguptopots.org.]