Alpha Connect Sisterhood Series

Susan Maiolo Angelicola, EM, on Being a Nurse Practitioner and Living with Multiple Sclerosis

April 29, 2022 Kelly McGinnis Beck Season 2 Episode 23
Alpha Connect Sisterhood Series
Susan Maiolo Angelicola, EM, on Being a Nurse Practitioner and Living with Multiple Sclerosis
Show Notes Transcript

On this episode, Kelly chats with Susan Maiolo Angelicola, EM, on her work as a nurse practitioner and what it’s like to live with multiple sclerosis.

Disclaimer: This transcript was developed with an automated transcription program, spelling and grammar errors may occur.

Kelly  0:04  
Welcome to the Alpha Connect Sisterhood Series podcast. I'm your host Kelly McGinnis Beck, national president. This podcast is all about sharing the stories of our members and our connection through Alpha Sigma Alpha. Thank you for joining us today. Welcome to the podcast, Susan.

Susan  0:24  
Thank you, Kelly. Thanks for having me.

Kelly  0:26  
Thank you for joining us today. So, I'm gonna have you start, like I do with every guest, tell us your Alpha Sigma Alpha story. How did you become a member? Where did you become a member? Tell us everything.

Susan  0:38  
Okay, so I joined the sorority in pledge season in the spring of 1992. At Trenton State College in Ewing, New Jersey. And I was part of the Epsilon Mu chapter at Trenton State College. This is the same chapter where everyone knows and loves Chayna Wilson was a member as well to my story for having to come to Alpha Sigma Alpha actually started in high school. So one of my best friends from high school who I grew up with, went to Trenton State College before me, she was two years ahead of me, and pledged Alpha Sigma Alpha, she was in our Delta class, Amy Evans is her name. And she encouraged me to join. And so, you know, like most people went to, you know, look at a couple of different of sororities. And it just felt like a good fit. It was a comfortable fit, because Amy was already a member. And it worked out beautifully. And the funny thing about that is Amy, actually was my assistants pledge master during pledge season, which as everybody knows, sometimes the assistant can be a little bit more tough than the actual pledge master. So that was kind of a funny time in our relationship as friends, but we remain best friends to this day.

Kelly  2:03  
That's awesome. I'd love to hear that you had that idea already in high school, I think for some of those relationships, where you've got a friend that's already joined and gone to that same school, it kind of follow along. So did you join? Did you go through kind of formal recruitment? Or was it kind of informal?

Susan  2:22  
No, it was formal, toward all the groups toward all the groups went through the process. At Trenton State College, there wasn't I'm not sure what it's like at other colleges or universities, but you didn't have to get to know X number of organizations. You know, if you only had wanted to pledge one organization, you only needed to meet with them. I'm not sure if that's different anywhere else. But I think I did like two or three more, maybe. But I really just kind of did that for sake of being fully transparent and making sure that this really was the best fit for me, which it was.

Kelly  2:58  
Sure. Well, certainly I hate I hate to say this, maybe it's the right way to say so lots of things have changed. But certainly in a formal recruitment style, we make everybody at least go to every chapter once. In formal recruitment, you can kind of go see whoever you want, so 

Susan  3:17  
Okay, okay. 

Kelly  3:18  
It's a little different. And certainly, you know, as times have evolved, terms have changed. And I have a VP of new member education and Okay.

Susan  3:29  
Maybe I maybe misremembering some of the process since this was in the spring of 1992.

Kelly  3:39  
Different back then,

Susan  3:40  
I know, many people that are listening.

Kelly  3:44  
Yes, we won't talk about that. Certainly today's college student wasn't born because about 2022. So they've all been born after the year 2000. Which That's right. I feel like I don't age and everyone else ages around me. And then I realized, nope, I'm aging too. It's true. So you came after Chayna. Because I know Chayna was a founding member of Epsilon Mu. Wish she's still in the chapter when you were there?

Susan  4:17  
She was. Yeah, I pretty sure she was.

Kelly  4:20  
So she might have been maybe a junior. senior or junior. Yeah, yeah. Was she still with our sixth class? Okay, so when she's still like, super involved in larger than life,

Susan  4:32  
yes. Yes, of course. It's a shade of shade. We all love Chayna.

Kelly  4:38  
Absolutely. So that I imagined that I imagine what she was like when she was in college and that it had to be probably similar to how she is now and or maybe times 2000.

Susan  4:54  
Yeah, she was wonderful. She's always been such a cheerleader for the sorority.

Kelly  4:59  
Yes. Was she a big Disney fan back? Yes. I think that must be her whole life because that is one thing anyone who knows her well knows her love of Disney and Alpha Sigma Alpha.

Susan  5:13  
But you know, even just seeing pictures on social media she just seems like someone even in adulthood that just has so much fun. And I love you know, to see her updates about Disney and I just think that's awesome.

Kelly  5:28  
Yes, it is. And I have to tell you going to Disney with her is a lot of fun. I've done it. Oh, I bet it's been crazy. Yeah. So one of the ways we got connected was through our mutual love of peloton and the AΣA peloton group on Facebook. So I have certainly had a lot of fun connecting with members just through through that experience. I never imagined when I got the bike that there would be number one the peloton community but then to grow the Alpha Sigma Alpha peloton community has been a lot of fun.

Susan  6:04  
Yeah, it's been it's been fun for me to to go on a ride and seeing if anyone else is on the ride and high fiving them or you know making a plan on Facebook to maybe all ride together. That has been a lot of fun. It makes the right it makes the time go by quicker on the bike and it makes an already fun ride experience even more fun to see others in there.

Kelly  6:27  
They've done an amazing job. I think building community. Yeah, and I love to see it like I see you and Karen Peretta. Right together. We've never met in person learning.

Susan  6:38  
Right? Right, exactly.

Kelly  6:40  
I'm not even sure if she lives. She lives in Ohio. I'm gonna get it wrong. She lives in one of the Carolinas, North Carolina or South Carolina. I have known Karen. Since the very very beginning, I traveled as a leadership consultant and she was a founding member of her chapter at Lynchburg College Now Lynchburg University in Virginia. Oh, funny. So when I see the two of you comment in the Facebook rapid ride and um, like, it just it warms my heart to see those connections as well have two sisters who've never met but have this common to common connections between the sorority and the love of peloton, and, and cheering each other on. So it just it just, it always makes me smile when I see those.

Susan  7:24  
Yeah, if and if anyone is listening that has a bike that isn't part of our group definitely join. And it's just a lot of fun to see one another while you're exercising,

Kelly  7:34  
it is a lot of fun and ride your search for us. And there's a hashtag, which cracks me I always kind of periodically scroll through there, like who else is in here, and then try to like, hunt them down on Facebook if I if they're on there to get them to connect. And so yeah, so that's how we started our connection. And since then, have kind of, you know, followed each other on Facebook. And so I would love for you to share two things about your life and experience. And first thing talking about being a nurse practitioner, especially, you know, in times of COVID, but more in general and kind of the difference between a doctor and a nurse practitioner. I know, some folks may know some folks don't. And it's interesting. I've seen a number of commercials, at least here in the Philadelphia lately really promoting nurse practitioners even more, which I find interesting. So I know a little bit about them, but I'm gonna let you tell us all about your professional career.

Susan  8:39  
Okay, great. Thanks. So I am a women's health nurse practitioner, which means that I primarily take care of women in an OBGYN kind of time in their life. And that can be anywhere from a younger adolescent, starting her menstrual periods that's having challenges regarding that up to and beyond menopause. passion of mine is contraception, preventive health care, nutrition exercise, kind of bringing that wellness piece into my practice. So the biggest difference between what I do and what my physician colleagues do, is the obvious, right, I'm not a physician, I did not go to medical school. So I have a four year degree in nursing. And I have a two year master's degree to become a women's health nurse practitioner, we have to sit for boards like physicians do in order to become certified in our specialty. What we can do kind of varies a little bit by state so I live in New Jersey, and in New Jersey. Essentially if you came to see me in my office, I'm going to do most things that a physician would do who you may see in my office so I will do your annual exam or insert an IUD or take a bite out See your evaluated breast mass, take care of you during your pregnancy, confirm your pregnancy order lab test results and interpret them order radiology exams, ultrasounds mammography is CAT scans and to interpret them, and in New Jersey, and I think in most states also have the ability to write prescriptions, including narcotic prescriptions. So the biggest differences are that I do not perform surgery in the hospital. And I do not deliver babies and I am not on call for our practice. So that's a little bit different than another type of advanced practice nurse who may be a certified nurse midwife who does do deliveries and can be on call and functions in the hospital in that capacity as well. The great thing about being a nurse practitioner is that I really develop lifelong relationships with my patients. There are some days even when there are really tough days in the office that my patients just truly bring me joy. And seeing them go through the different phases of their life is just a privilege for to be able to participate in their health care. So I have an interdependent relationship with the physicians that I work with. We I am fortunate enough to work in a very large department, but one that is very collegial, and we all come to each other with questions, physicians will come to me and say, Hey, can you take a look at this, or I need help with that. And vice versa, we kind of jump off of each other's knowledge base and our niche of the types of patients or situations where we care for our patients. And I'm lucky to work in a really, really supportive environment. So I think it's a privilege.

Kelly  11:48  
Absolutely. And that is my experience with nurse practitioners is at the OBGYN going in for my yoga. And that's where I think I first learned about the you know, the difference, and I see my nurse practitioner every year, that's who I go to I, the only time I ever saw a doctor in the practice was when I became pregnant. And I kind of said, I want to I want every visit to be with a doctor because there was there was at least maybe eight doctors in the practice. And I was like, I'd like to have hopefully met the person that's at the other end when my child is born. Exactly. Yeah. And thankfully that worked out by the time I delivered the person that was there was one that I had met previously. So but other than that, I every year I go see my nurse practitioner, and I just I love her.

Susan  12:45  
That's great. I'm sure she loves you too. And that's kind of have you know, and patients will say, Oh, I'm so happy to see you and you think well, you're coming for a GYN exam that really made my day. And I think the important thing to know too, for for anyone who may not be familiar or who has not had personal experience with a nurse practitioner being their care provider, I also know my boundaries, right? So if I do a biopsy on someone and God forbid, it's a cancer, I'm not going to manage that that person then goes to see my physician colleague or a specialist or if something is really out of my scope of practice, then you refer them to a physician and I think universally nurse practitioners are probably pretty good about that. So anyone that has seen a nurse practitioner or would want to should feel comfortable that they are in very safe and knowledgeable hands, but at the same time, that person knows when it's appropriate to refer to a higher level of care from the physician.

Kelly  13:49  
Sure. So I feel like I remember vaguely at my own regular doctoral practice, there's a nurse practitioner, but I assume every field of study across the spectrum for medicine, you can be a nurse practitioner, is that a fair statement? To me?

Susan  14:08  
It's generally a fair statement. Yeah, there are. So just like with physicians, their specialty, so I am only certified to take care of women from their first period until end of life. So I don't see pediatric female patients, just like a pediatric nurse practitioner would not see a 40 year old woman coming in for her annual exam. There are other specialties like family nurse practitioner or Adult Nurse Practitioner, who just like an internal medicine or family medicine physician sees very, very diverse groups of patients from babies until geriatric care. And those types of more broad general specialists or certifications rather, can also work in specialty groups like Endocrinol allergy or, like I said internal medicine or dermatology. So there are definitely specializations in kind of in and under the umbrella of more broad certification.

Kelly  15:13  
Got it? And so my other question that that just kind of popped in my head, so it's interesting, like I said, I've seen on the news a lot more promotion for nurse practitioners. Why, from your perspective? Why do you think that is that there is, I don't know, maybe less awareness or less. I want to say comfort because that doesn't sound like the right word. But I feel like right, or you might have a bias towards a medical doctor, as opposed to a nurse practitioner for which for all intents and purposes is almost the same, but not quite as you described.

Susan  15:49  
Right? You know, that's a great question. And I've seen those commercials on TV, in the New York metropolitan area to on our local stations. And I know you said you were in the Philadelphia area, I'm not sure if it's just to continue to bring awareness to the profession. The organization where where I work is a huge multi specialty practice organization, we probably have now close to 3000 providers, nurse practitioners, pas, and physicians included. And there are a lot of nurse practitioners that work in our in our organization. So I don't I can't even remember the last time a patient said, Now, what are you or I sensed that they felt uncomfortable with my role, but I think maybe it's regional to or, you know, just if someone's comfort level has always been, you know, the practice that she goes to is only been, you know, staffed with physicians, and there may just not have been any exposure. I think it's just probably to promote the profession in general. I think it's great.

Kelly  16:56  
Got it. Okay, that's helpful. I've always kind of wondered that

Susan  16:59  
in the back. Yeah. We I'm certainly not lacking for business. So I don't know if it's, I don't think I could be much busier. So that's a good thing. That's a good thing. Most days, maybe not by the end of the day on a Friday. But yes, overall, it's a blessing. So I don't think it's out there that promote?

Kelly  17:17  
Absolutely. So what me what made you interested in going the nurse practitioner route, then maybe going for? You know, physician route

Susan  17:26  
school? Yeah. So it was something that I definitely thought about. In fact, I was going to fit for some biology exams without taking the course I forget what that's called in college, where you buy the book, and then you just sit for the exam, auditing a course, maybe just to get the credits. Because I thought to myself, Do I really want to kind of narrow my options and miss out on something, but to be honest with you, and I don't just say this, because I am a nurse practitioner, there hasn't been one day where I have regretted not going to medical school women, especially who are physicians, women and men, but women especially, I mean, they have my utmost respect. It's a lot to go to four years of medical school than for OBGYN to do a four year residency, where you are on call all the time, day and night doing deliveries. And then coming out with a lot of debt. In some circumstances, it's just a lot. And I did not want to be on call. That's also why I didn't ever pursue becoming a nurse midwife I for my own peace in my life and my lifestyle that I want. I like to come home every night and not have a pager and not be on call. But I some of my couple of my dearest friends are female OBGYN physicians, and it's a lot and like I said, they just have my utmost respect, because it's it's very demanding.

Kelly  19:08  
Absolutely. And it's not the word is I want to use I mean, I think probably demanding is the right place. And it just it takes a lot to get there. Right and, and then a lot of time afterwards to start to pay off all of the debt that you've accumulated. Get in there. It shouldn't be quite that expensive, I think to become a medical professional. I've heard that right. It certainly the the depth that folks acquire to is what drives folks to specialize because they might be able to earn more than a general practitioner, but I feel like that's where the biggest need is in the population.

Susan  19:44  
Yeah, absolutely. I agree. Those primary care providers, especially in areas of the country, where you know, geographically there may not be such a high population to try to find good primary care care. It is really tough out in more rural areas. I agree with you.

Kelly  20:03  
Yeah. Well, thank you for all that you do for you in the profession. And oh,

Susan  20:10  
What about COVID? You had to Kelly? Yeah. Fortunately, doing what I do, I was never on the front lines during COVID. Like so many people that I know were in health care and are struggling with it emotionally, every single day still. So what happened to me was I was furloughed for one week within my organization, which most nurse practitioners and physician assistants were in early April 2020, because our offices essentially shut down. So if all you do is see patients in the office, there are patients, no patients are coming in. So we were furloughed for just a week, thankfully. And then we were brought on to the COVID response team until July of 2020. And what that looks like for me was kind of a mix of everything I was doing. antibody testing, when antibody tests first came around after Memorial Day in 2020. Wearing the whole space suit every day and the mask and everything pricking people's fingers to see if they had had COVID. In the past. That was before Radon Testing was readily available. I did a lot of telemedicine and phone calls to patients, triaging them on the phone, when they had symptoms, determining if they needed urgent care or emergency room care whether they could just kind of tough it out at home with comfort measures, telling people their positive test results that at that time, were taking days to come back. So I kind of did a little bit of everything. But fortunately, was not ever for the most part in harm's way, like others in the medical profession were.

Kelly  21:56  
But I imagine you have had the experience of patients delaying their limbs or breast cancer screenings or whatnot.

Susan  22:06  
Currently, I feel like just now things are really getting caught up. If I see someone that I haven't seen for an exam since early 2020, or the end of 2019. That's, that's more of the unusual case. Now I feel like most women, at least in my geography and demographic are caught up. So yeah, it's it's been an interesting journey, to say the least. And I still, by my own, you know, we don't have to, we could just wear regular surgical masks that I still wear the n95 all day every day.

Kelly  22:38  
I'm sure certainly, in some respects, I think you know, you go into the doctor's office or whatnot, you know, there's likely germs there already. So whether it's COVID, or something else, it might not be a bad thing, just to wear a mask for your own health.

Susan  22:54  
I do not disagree.

Kelly  22:57  
So one of the other things that you have have shared publicly a little bit I've seen on Facebook is that you live with multiple sclerosis. You never say that well. And I would love if you could share a little bit about your journey living with MS.

Susan  23:19  
Shortly me happy to. So my diagnosis is kind of a funny one. And my friends and family will still say I still can't believe that's the only thing that tipped you off. So this was in 2004 into 2005. And I had a sign called Learn meets sign, which the only way I can describe it is if you lower your chin to your chest. I not only felt a stretch in my neck and back, which anybody would but I had this what I can characterize as a vibratory sensation. It wasn't pain, but it felt like my spinal cord was vibrating. Interesting. And so of course, I was a yes, I was I was four years into being a nurse practitioner at that point. Google this back then I think there was Google. And you may have this is a sign with MS. So I told my partner at the time and my parents. I have MS. It's totally ridiculous. You don't have MS. Go to the doctor. You don't have MS. So my physician at the time and family practice doctor said she she said that's probably a pinched nerve. We'll get an MRI. Well, they're lesions all over my brain and spinal column. So there we go. I diagnosed myself. So now now every time I think I have something they say I'm sure you don't have that but you never know. So right away, I reached out to a wonderful A physician who and I live in northern New Jersey practices or at the time practiced in New York City. And he and his colleagues run an international MS practice where they are neurologists that have a fellowship specialty in just handling and taking care of patients with multiple sclerosis. So I knew that that's what I wanted, rather than a general neurologist and being so close to a metropolitan area like New York City that was readily available to be just to pay a toll and go through the tunnel for that. So I have been under his care since that time, I am very fortunate and blessed that the only symptom I really have ever had is fatigue. And sometimes some weeks it's really, really bad. And most other days, it's manageable and going to bed early, which my husband is very supportive of. And coffee, which is my only chemical addiction, keep me in line most weeks. But you know, MS is very interesting, because people who have MS can have such diverse experiences with it. I mean, if you looked at me, you would never know that I have MS. Unfortunately, many times, I'll forget that I haven't to other than the fatigue. And then you can have some people with really progressive disease states that will wind up needing support for ambulation and walking or need wheelchair care or have problems with bladder and bowel function that need to self catheterized. I mean, it can just run from A to Z, what someone's experience with MS can be like, so I am extremely fortunate that I live with it the way that I do. I take that I give myself intramuscular interferon injections every week, which I take Tylenol before and after Otherwise, they would give really aggressive flu like symptoms. So I have to I do that on a Friday and take before and after pre medication with extra strength Tylenol, and that works really well again, very blessed. Most people that have MS these days do not take injections. This is super old school. But my neurologist, sense of all of this is Hey, you are basically in remission. And yes, you've been giving yourself injections since 2005. But you also haven't really had an exacerbation, so I'm not taking you off. And I guess that makes sense. But I do have, you know, some parts on my legs and my bad have a lot of long term bruising, that will probably never go away but full price to play to. True.

Kelly  27:51  
So you said 2004 That seems off?

Susan  27:55  
For 2005. Yeah. Yeah, most people are diagnosed with MS somewhere between 20 and 30. knew that. Yeah. Yeah. It's unusual, very unusual to have a pediatric diagnosis or later in life into your 40s 50s and 60s. So it's really within that I think, probably 20 to 40, let's say age range. That's the most common time of diagnosis. Yeah, I'm not really sure why that is.

Kelly  28:24  
It's interesting. I incorrectly assumed it was more attributable to, you know, later in life. No, exactly. The timeframe. You said you wouldn't like for Easter? Yes. So yeah, I guess maybe that's because maybe more the symptoms become more presentable on a daily basis or interfere with daily activities more or maybe I'm just thinking about the west wing and the fact that Jed Bartlet was diagnosed with MS. And that's what I remember.

Susan  28:54  
Yep, yep, that's right. She was. I don't know. I mean, it's the interesting thing is that if you are a male, and or if you are diagnosed later in life, you tend and this is a generalization to have a more difficult disease, to manage and to get into remission, as opposed to your quote unquote, typical female in the 20 to 40 age range.

Kelly  29:21  
And is it hereditary?

Susan  29:23  
They don't believe that it is. No one in my family has MS. My father has rheumatoid arthritis, which is another autoimmune disease. My mother doesn't have any autoimmune diseases. My husband and I don't have children. So I have nothing to go by with that. There is some discussion and this has actually been on in the media recently, that there's a lot of research and looking into whether MS can be triggered by the Epstein Barr Virus mono. So yeah, and I'm pretty sure I had mono when I was little. Right? I think I did. So who knows if that's something thing that could have triggered it. It's also more common in our latitude in the northern parts of the country and northern parts of the world. So kind of the northeast through the middle of the country over to the United Kingdom and France and all of that area of the world, you're much more likely to see people with MS diagnoses than further south. And the closer to the equator, you are in Central and South America, there probably are very few people that have MS. And the reason for that is that they think there's very much a correlation to vitamin D status, and autoimmune disease in general. So long before it was trendy to take vitamin D, I've been taking high dose vitamin D for probably 15 years. So who knows that that has something to do with keeping my disease at bay?

Kelly  30:53  
Interesting? Well, there's a good plug for why you should get out in the sun as much as you can certainly a sunscreen. Yeah, it's get out in the sun, or I know, I've got friends who have like seasonal depression or whatnot that Oh, get a lamp during the winter months, when you can't be outside as much just to continue to kind of get that get that UV rays and have an impact, certainly from a depression standpoint, but certainly, clearly other benefits too.

Susan  31:25  
Yes. Right, exactly.

Kelly  31:28  
And so do they anticipate that as you age, you could see additional symptoms.

Susan  31:34  
Generally speaking, while anything can happen, I think the longer you go, being in kind of a quiet state of your illness, the longer you'll remain there. I've even talked with my neurologist about coming off of my injections, because in my mind, I feel like, if I stopped them, I'll be fine without them. And the point is, you just don't know until it happens. So he's, he's convinced me to stay on them for now. And he's kept me healthy and well, for all these years. But yeah, I think the longer you go, and your medications are working for you and keeping your disease in check, the longer you'll be good. Hopefully.

Kelly  32:15  
Absolutely. Well, that's good. And I chuckle a little bit, I think about folks on different different kinds of medication, right? And you can never figure out like, I feel good. So does that mean I'm cured? Or does that mean exactly. The medicine is doing what it's supposed to do? And I feel good, because I'm on the medicine. And it's hard to know.

Susan  32:33  
That's exactly right. I have patients that tell me that all the time, right. I was starting to have blood pressure medication, and now my blood pressure is normal. Yes, please stay on your blood pressure. So I should just listen to myself.

Kelly  32:48  
Well, sometimes they say that you're not always you're the best patient if you're in a medical profession.

Susan  32:53  
Right, right. This is true.

Kelly  32:56  
Well, that's good that there's such a positive I think prognosis for you to know from going from there. Because like I said, I when you had shared on Facebook, that you had MS. I thought, you know, I don't I don't know a lot about MS. I don't know what that's like and you know, curious to hear more. And I imagine others will be curious to learn more about it as well. Like I said, I know that it's a degenerative disease, or neurological disease. And like I said the most the thing that I remember the most is watching the West Wing. And that whole that whole storyline about him hiding it and then coming out and saying this is not a big deal. You all are making this a bigger deal than it is.

Susan  33:40  
Yeah, well, it's funny, I'll I'll tell you a little bit about the disease first, and then I'll jump off of what you just mentioned. So it's kind of interesting to me what actually happens in the body when you have MS. So all of the nerves and all of our bodies are basically insulated by a waxy sheath called myelin and ye li n. And that helps to protect all of our nerves so that they communicate with one another and your nervous system functions normally in your brain and spinal cord. With MS, your, your immune system, which is why it's called an autoimmune disease actually works against it's against itself and your body tries to destroy that myelin sheath or that protection around the nerve. So now your nerves are exposed. Some of them die, they don't communicate with one another. They don't, you know, synapse off of each other in the way that they should, which is why some people have movement disorders with MS or lose function or the ability to walk or have effect their bladder or bowel because all of that area is also innervated with nerves. So that's actually the physiology of what happens in the body. The other thing that when you mentioned trying to keep it a secret on the West Wing, I know someone Lucy has a very high level professional job and has had it for years. And her employer and colleagues do not know because she fears that it would affect the way that she's viewed and possible opportunities for growth that she would be given. I have always been very upfront with, I've worked in two different places now since I've been diagnosed about what I need in terms of accommodation, for example. So I think it's really important as someone is comfortable that if you live with a chronic illness, could be anything but like MS that you advocate for yourself in your workplace. And so for me, that means every year I have family medical leave forms filled out by my neurologist, but women who have had children usually have those filled out for obstetric and postpartum care. But basically it's it's job protection so that if I have unexpected absences related to my MS and can't come into the office and see my patients that could never be held against me, in a job security situations. So I wish everybody who lives with a chronic illness felt comfortable enough to confide in their employer and in their, with their HR department, like I have been able to thankfully. Because I don't think it's something that anybody should have to fight have to hide or feel potentially marginalized because of,

Kelly  36:33  
I couldn't agree more, I think there's a lot of work we still need to do to normalize all kinds of health related illnesses. It seems like, you know, cancer and some of the big ones people eventually either have to share because he can tell physeal Shortly, or you you've got treatment that takes you out longer, but you know, I think about it, not that it's the same in any way, shape or form, but similar to mental health. 

Susan  37:02  
You know, I was gonna say that Kelly's Absolutely I couldn't agree more,

Kelly  37:06  
you know, we just we need to get comfortable talking about these things. Everybody has something, right, that they're going through and you know, and that was part of why I was curious to learn more from you of you know, what, you know, what is MS? And you know, how do you live with it? And so this has been really informed infront bull, I can't talk today. Educational informative, all the words. For me. You know, I've learned quite a bit just listening to you share that, and certainly would be you view that disease differently for folks, because I think I've always thought about it as more of a debilitating disease. Yeah, it gets, it only depends on to your point where those where it it hits in your body?

Susan  37:51  
That's exactly right. Yes, I have a lot of, for example, a very common first sign of having MS is something called optic neuritis, where you would have eye pain and loss of vision. And on an Optima logical exam, you would see a lot of damage and inflammation to that optic nerve. I have a lot of lesions in my brain, but none of them are nearby optic nerve. And I've never had my vision impacted. So you're exactly right. It really depends upon where it is for you personally and your body.

Kelly  38:25  
Yep. And so the injections that you take every day are really what helps kind of keep those keep that myelin together. Yes. Is that the best way to save?

Susan  38:37  
Yep, there are some daily injections that people use minus a weekly one. But yeah, so it helps to it crosses the blood brain barrier. And it helps to protect that demyelination from happening.

Kelly  38:52  
So I work in in the healthcare field, I'm in an early stage development company. So I know what crossing the blood brain barrier means. But maybe you can share that for others who are listening who don't necessarily understand what that term means. Because it's important term when it comes to developing pharmaceuticals.

Susan  39:10  
Right, right. So most medication that you would take, Don't cross this barrier in our central nervous system and have access to brain function. Essentially, that's the easiest way to explain it, I think unless you want to jump off that in any way. But some drugs do cross that barrier in our central nervous system and make it up to the brain.

Kelly  39:30  
And it makes it more effective. Yes, in the body. And so I work we're developing, hopefully a new drug to help treat Parkinson's disease. Oh, wonderful. And the current standard of care is a drug called Liba dopa which if you gave it alone doesn't cross the blood brain barrier. So you always see it in conjunction with carbidopa which is what helps it do that and then metabolize in the system. So It that's that's how I became familiar with that term of, you know, interest in the CNS space. Right? It needs to cross the blood brain barrier in order to live.

Susan  40:09  
Yes, yes. Yep. So honestly, having MS is what makes me so intent on doing the peloton like I do it. And I just had my 1000 tried a couple of weeks ago. And I feel like for me, and this is probably someone could diagnose this psychologically, but for me, it's a little bit about control. So this is a disease that I don't have control over, I do to some extent with the treatment that I'm continuing to give myself. But I didn't, you know, there's nothing that I could have done to prevent this, this is happening. And however it's going to happen, it's going to happen for the rest of my life. So I feel that keeping myself in as good a physical shape as I can. I wholeheartedly believe that movement, and food but movement is medicine. And so being able to move my body and keep my muscles strong, and to keep my flexibility and balance as best as it can be, is absolutely key to staying healthy and keeping this disease at bay. So there are many times during those 1000 rides, I did not feel like writing I believe me, I'm just as happy to sit on the couch with a bag of pretzels with my husband and I can't. Like I'm not you know, someone that would be us becoming a nurse practitioner to go be a personal trainer or anything like that. But it's it's like this, this little tap on my shoulder all the time, get on the bike, you've got to stay strong. You've got to stay healthy, you can do this. You have to do this. And so that's kind of been my overriding motivation.

Kelly  41:51  
Well, congratulations on 1000 rides. Thanks. That's amazing.

Susan  41:54  
It's three years. It's not that impressive. It's like a crash or something.

Kelly  41:59  
I think I've had the bike now. Two years, three years, three years. I'm not there. I think I just hit 700. So

Susan  42:10  
that's great. Yeah, that's awesome. That's way more than most people, right.

Kelly  42:14  
It's one of the things I love about that community, right is you hit certain milestones and people celebrate them with you. And if you're lucky enough to get a shout out on a live ride. Yes. Right. Your thing, which it totally is mine.

Susan  42:29  
So Kelly, who is your favorite instructor?

Kelly  42:32  
Oh, that's a hard one. I would say it's a it's a toss up between Jen Sherman and Robin. Okay. I haven't had a chance lately on the Sunday writes to join you all, when she does her Sunday, Jen Sherman does her Sunday rides, but she is one of my favorites. I ride a lot with Robin. And then it kind of depends on my mood and the music I'm into and whatnot. So I might ride with Cody, I might ride with Christine. Yeah, I like Dennis for country music because he does like 80s and 90s country music. So I get myself a little bit there. But yeah, so it all just depends. But I love that they've got such a wide variety and making music. And I think I was thinking about this, as you were saying, you know, sometimes I just gotta motivate, you know, tell myself to get on the bike. And I do the same some days where I've had a super busy day and I'm like, I didn't get on the bike. I know I need to get on the bike. And I think well, even if I get on and do like a 1015 minute ride. Like I love that they've got short ones. If you want to hop on real quick and get a short little workout in or do a 30 minute ride or a 45 minute or 60 I have yet to do anything longer than an hour. More than an hour. I've got a friend who's done a 90 minute ride. I was like

Susan  43:54  
crazy. Right now. That's that's a lot.

Kelly  43:58  
For me. It's a lot. She loves it. And she's part of the Power Zone group, which is a whole other piece for me that I'm here to ride and enjoy the music and you know, hear your stories. So, so for me, it's been enjoyable. I actually got the bike because Angie Schaefer I don't know if you've seen her in our Facebook group or Britain, she lives in St. Louis, Missouri. Okay, so she had the bike before I did. And she always used to post and she was like, you really need to get the bike. And so I went to the Philadelphia store, because I've never seen a spin class before in my life. Yeah, and said, Well, let me really see this bike in person and decide if I want to make the investment. Right. And that was honestly what sold me was they put me on there. They stuck me on an MRI for like, I don't know, 1520 minutes. Yeah. But then they went through all the features that you get with the peloton and the app and the other instructors and workouts and I was like I owe like this fits into my life, like trying to have a gym membership and go to a class has never worked for my schedule and my travel both professionally and sorority wise. So sure, this was like, I feel like it opened doors for me from a in a health and exercise place that hadn't before because I can do strength training. And I can do outdoor walks, or runs and yoga, and I love their sleep meditations. And I can take my phone and my app and go with me to a gym at a hotel, or even just they do like bodyweight exercises, you could do it and nothing else that I could do in a hotel room. And so, for me, that was what sold me. And when people like, that's a lot of money for a bike. And I'm like, Oh, it's so much more than a bike.

Susan  45:53  
It's truly, really, really is

Kelly  45:54  
absolutely between the community that they have done an amazing job curating, and then all these other opportunities on that platform. That for me was huge. And I can definitely say in the last three years, I have worked out more in the last three years than I think I ever had done previously. Because it's so convenient.

Susan  46:16  
Yes, it really is. It's right. You're absolutely right. And I and I feel the same way about you know, some people really and truly enjoy and have motivation from going to a gym and meeting with their friends at the gym and being part of an in person, class environment. i For better or worse. I know me and I'm just lazy. And I'm not going to get up at 5am and go to a spin class, but I will go to my basement gym and do it there.

Kelly  46:42  
Yeah, no, actually, I don't think that's laziness. It's just a personal preference. Yeah, that's true. The people that say, you know, who's gonna ride at 5am? Like, Oh, honey, that's not me. I've tried to get up in the morning. My legs don't want to go. Right. Like they really just like they feel like mud. Yes,

Susan  47:01  
I can do six, I can't do five.

Kelly  47:03  
I think I'm better like after I've had a cup of coffee. A little bit more alert than I can hop on. So

Susan  47:10  
I have been known which you may want to try to put on your two water bottle holders. What are on one side and coffee and a to go cup on the other? They weren't Oh,

Kelly  47:23  
well, I might have to try that out.

Susan  47:26  
Especially if you do a 60 minute one, you can use that little bit of extra caffeine to push you through.

Kelly  47:31  
So Good lord. Well, I don't know about that. But I might try that. I might have to try that one morning to get my butt out of bed and see if it works. Well Susan, this has been a lot of fun. Thank you for coming on and sharing your stories. I have really enjoyed this time together and to get to know you a little bit better.

Susan  47:51  
Yes, thank you, Kelly. And likewise at when peloton Studios in New York opens up in the summer or the fall. You should make a trip over to New York City and we can do a live ride together and meet the instructor.

Kelly  48:03  
Yes, that is on my bucket list. I heard September. The last time when not the last time I was in the city my son and I went in December and so I he wanted to go to the NHL store in the city. So we walked over to the NHL store well it's right there by the peloton studio feet and I was like taking pictures and he looked at me I was like, I'm so excited. Here's the peloton studio even though it's closed, and he's like a dork. I was like, well, so well. So I

Susan  48:32  
cannot when I did that once a couple of years ago before COVID. And I have a picture with Ally Love hugging me. Oh, yeah. So that that should be on our agenda for some time in the next year as well. Were letters somehow,

Kelly  48:48  
you know, I bet we could try to reserve the room and get a whole Alpha Sigma Alpha group. Could you imagine?

Susan  48:55  
Oh my gosh, I would love that. That

Kelly  48:57  
would be awesome. We'll have to put that in the Facebook group and see who's who's ready. And we can plan it. We just got to figure out how we plan it far enough in advance, but that that would be awesome. We could all get shirts made and there would be like a live ride on demand for years that show the Alpha Sigma Alpha riders. Absolutely. Well, thank you so much. I really enjoyed it and I hope our listeners have as well and to our listeners. Until next time

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