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Cyndi Lynne Lamarucciola talks about navigating work culture when it’s more acceptable to leave early to go walk your dog than for a doctor’s visit. How to successfully leave the corporate world behind. Feeling embarrassed as a nurse who “should have known what was going on” when it came to her own diagnosis.Gracefully handling chronic illness in the workplace, The real way to “stay in your own lane” when dealing with what other people think of us- without it blowing up in our face. Why we need to be our own PR department, the secret to asking and receiving help without feeling like a burden, Advocating for yourself with family, friends, work, in a healthcare setting. And the secret to getting a second opinion without conflict.
Guest Spotlight: Cyndi Lynne Lamarucciola
Cindy Lynne Lamarucciola is the creator of the Heal Your Life Community. Cindy Lynne draws on decades of experience in healthcare, corporate management and life coaching. She designed the program to empower women to successfully manage their life career and reclaim their health while still being active, informed participants in managing their diagnosis.
Your diagnosis is only part of your life. Put your diagnosis in its place. Nurse coach, mom, yogini foodie and compassionate guide. Cindy Lynne helps women rediscover their best life after a diagnosis.
Free Guide Cyndi Lynne talks about in the episode
Join her Heal Your Life Community
Connect with Cyndi Lynne:
- Website: www.cyndilynne.com
- Instagram: https://www.instagram.com/coachcyndilynne/
- FB: https://www.facebook.com/coachcyndilynne
- LinkedIn: https://www.linkedin.com/in/cyndilynne/
NOTE: This podcast was transcribed by an AI tool. Please forgive any typos or errors.
Cyndi Lynne Lamarucciola
[00:00:00] Hi, everyone. Welcome to Live Your Life. Not Your Diagnosis. If I picked one word to describe today's episode, it would be empowerment. Cyndi Lynne works with people who have received diagnoses of all kinds. And uses her expertise as a nurse and a coach to help them move through the increasingly complicated healthcare system.
To create a plan for their diagnoses and beyond.
This is a highly informative episode. If you're still in the thick of things with managing a diagnosis or potential diagnosis.
She gives us so many great tips and tools to become more educated and less anxious about a life-changing event.
At the end, we talk about the very real idea of self image during and after a diagnosis. So please enjoy this week's episode and visit andrea hanson coaching.com for more on Cyndi Lynne resources we talked about in the show and transcripts from today's episode
Welcome to the live your life, not your [00:01:00] diagnosis podcast. I'm Andrea Hanson, author, motivational speaker. And master certified coach. When I was diagnosed with multiple sclerosis, I was told. I would never reach my goals. But I did. And I'm on a mission to prove that life with a chronic illness can still be expansive and quite remarkable.
Everyone has their own unique path. I'm talking to people, living with a chronic illness that come from different backgrounds, have different points of view and are achieving amazing life goals of all kinds. Do you inspire you? To achieve what you thought was impossible. These stories are raw. Uncensored and judgment free.
This means that there may be some adult language sensitive topics and
possible triggers for listeners. Listener discretion is advised
[00:01:45] Andrea: I am here today with Cyndi Lynne Lamarucciola the creator of heal your life community. Cyndi Lynne draws on decades of experience in healthcare, corporate management and life coaching. Cyndi Lynne [00:02:00] designed the program to empower women to successfully manage their life career and reclaim their health while still being active, informed participants in managing their diagnosis.
Your diagnosis is only part of your life. Put your diagnosis in its place. Nurse coach, mom, yogini foodie and compassionate guide. Cyndi Lynne helps women rediscover their best life after a diagnosis. Hi Cyndi Lynne how are you?
[00:02:30] Cyndi Lynne: Hi, I'm doing great. Thank you so much for having me and great job on the last name there.
[00:02:36] Andrea: Thank you. It is a passion of mine. Having lived with a really hard to pronounce last name for most of my life.
[00:02:43] Cyndi Lynne: I get that.
[00:02:44] Andrea: What I love first and foremost about your story is that you have had so many different facets. You are in corporate, you are a nurse, you're a mom, you're a coach, you're a yogini. You have your own business.
There's all sorts of things and all sorts of positions that [00:03:00] you've been in. Where were you in your life when you were diagnosed and how did that fit in
[00:03:04] Cyndi Lynne: Sure. Um, you know, I think like a lot of women like us, when we look back on the path that we've taken, we, would've never believed it had somebody told us this is where you're going to end up, and this is the stops you're going to make. And this is the way it's going to work out because of course we all come out of school or, or start a career with an idea of how things are going to shake out.
So I started. Nursing school graduated with my bachelor of science and nursing went and worked in a hospital and, and that was all fine and good. And then things began to migrate for me. So I went from working in the hospital with patients, primarily cardiology, pacemaker, defibrillators, that kind of thing to working for one of the companies that manufactures those devices.
And then I moved from a sales position and, and installation, if you will, into the corporate world and [00:04:00] what, uh, shock it was. I mean, there was marvelous parts of it compared to nursing because there was actually the possibility of just walking out at five o'clock and, and not thinking about anything. But I was, um, shocked to, to really experience how unhealthy the environment can be in the corporate world.
I've been out of it for, you know, for almost 15 years now. And yet everything I hear from my client says nothing has really changed. You know, laws can change. HR regulations can change. Um, the posters that are all displayed around our, or all this blade around are changed, but it still can be a challenge to, to be a woman in the workplace, in a management position, if you have any kind of health issues at all.
it was, it was probably, I like to joke that when I was in the corporate world, it was more acceptable for me to say, [00:05:00] I need the afternoon off to take my dog to the vet. Then I need the afternoon off to go to a doctor's appointment. Because if you said you had to take your dog in, everybody would be like, oh my gosh, I hope they're fine.
You know, can I cover for you? If you had to go to the doctor's office, there was a whole different weight to that. So I, I didn't talk about what was ailing me. I didn't talk about circumstances that I was having challenges with and I just kind of kept going. So by the time I was in my final corporate position, I was a, a manager of a, a regulatory affairs department and , , was in the process of going through an FDA inspection, which is a, extremely stressful process.
And the, and the whole company gets evaluated and, and you have people in looking over documents and you really need to be on your game and you need to provide, what's asked for and do it in a professional and very timely manner. And, and there's a lot that, that really hangs on [00:06:00] these. And during this particular inspection, I started getting just this terrible stiff neck.
It could hardly wait till it was done. And, and you never really know how long they're going to last. And if I could just get a massage and if I could just get to, you know, maybe a chiropractor, maybe somebody could help me. And the pain got so bad that I ended up, um, in the dentist office because the massage didn't help muscle work, didn't help, um, painkillers didn't help, you know, and I needed to function.
So we're talking just big doses of ibuprofen, which were doing me no good
And found out that I had a massive, absces a large part of my bone had actually been infected and was disappearing.
Had infection all down my neck and, and lymph on that size. And I [00:07:00] had, I was so accustomed to a stress level.
Where that kind of pain was part of the stress. And you'd just wait for it to pass that. I didn't even know this was going on in my body.
[00:07:12] Andrea: it's amazing what we get used to as, just as humans. I think it's just part of human nature. If it's something that is constant like that, or like a slowly increasing, we get used to it so fast that we don't realize how big it became until it's gone.
[00:07:31] Cyndi Lynne: Right. And it, and it became huge. And the other part of it is it's really embarrassing. Like as a nurse, how did I not know that this was going on? But I had compartmentalized so much and I had responsibilities and I did not want to, you know, I didn't want to come, I didn't want to come up short for the company.
And there was so much at stake and, and this was my job and I was proud of the job that I was doing. But the toll it took [00:08:00] was tremendous. And when I stepped back, when I saw the x-rays, when I saw the bone missing, it was a wake up call that I really needed to do something else. Mm-hmm
[00:08:12] Andrea: I'm always interested in. What that departure actually looks like because we're in corporate and I think you put it very well. There's a certain sense. A lot of times, not always. I know for me, there's this sense of community, even if it's not like you're so loyal to the actual company, there's a community within the people that you work with.
There's pride in your job. And so just picking up and leaving incredibly difficult.
[00:08:43] Cyndi Lynne: It is. And when you're in a
Situation and you, you have people in the trenches with you and I had my employees that I felt very responsible for and would try to, to shelter from some of that. And I didn't want to leave [00:09:00] them high and dry, you know, then there was the whole aspect of household finances.
We were a home that was used to two incomes and it was a significant income. So there were those conversations about, okay, now what, and when I decided to leave, there was a part of me that was willing to do some consulting in the same area, but I really wanted to make a clean break. because I knew I would probably end up in the same situation and just put myself there rather than letting, letting someone else, you know, under the guise of, of someone else doing it.
I could probably work myself into that same mess my
[00:09:42] Andrea: That is something that is not talked about a lot is a lot of people, a lot of people with chronic illness will leave corporate because of exactly why you, or why you left. And they think I'm going to become self-employed I'm going to, whatever that business is, I'm going to run my own [00:10:00] business and they Don.
Realize, and I was guilty of this too. They don't realize how indoctrinated they are into this corporate culture. And they don't know any different, I didn't know any different. And so when I started running my business, I was, I basically became my boss that I left and wanted to get away from. And , you just don't know any different and to do something different feels so strange. And I remember feeling like I was slacking a hundred percent because I left dishes in the sink because I worked from home. Like I kept feeling like I had to clean things up really fast or make dinner every night because I'm home. I should be able to do this.
No idea what a balance would look like as far as working, especially working from home. and not making half your day about running errands, going to the grocery store, doing all sorts of things that you feel like you should do cuz you're home. But then all of a [00:11:00] sudden you have all this other responsibility on top of you.
And then at the same time, I felt like I was lazy because I could only work for like three or so hours a day before I would get super tired. And I didn't understand that once you start working for yourself, you are hyper focused
on what you're doing. Like way more focused than when you're at corporate.
I just didn't understand the balance at all. That took me a while out
[00:11:28] Cyndi Lynne: it is. It's a, it's a, that's a real interesting thing because you want to feel productive. There's a lot of things you want to do, but if you don't know what the structure of that looks like, you're right. I can at least tell when the dishes are washed, you know, I can check that box. It's done. So I had the advantage that I, I wanted to work with clients again.
I wanted to work, not with patients necessarily. I wanted to work with self driven people who wanted to get well,[00:12:00]
And that's a little bit of a controversial statement. I think if you would, if you would query people in a hospital, you'd say, okay, who wants to get well?
And everybody would say yes, but the reality of it is many, many people check into the hospital, get there. What we used to call the tuneup, some IV fluids, the medications that they haven't been taking back on board, get things balanced out, go home decline because they don't keep up all the practices, the medication, the nutrition they're supposed to and come back and do it all over again. And it was very frustrating as a healthcare professional. And I'm sure it was frustrating for the individual as well, but I wanted to work with people who truly wanted to make a differe.
So I started with physical practices, , Pilates and yoga. And I still see some clients on a, a rehab basis for that, um, something called muscle activation techniques.
And so I had a physical practice and people could set appointments and, um, and they still can to some degree, [00:13:00] and, and that was measurable and that was fine, but it was also new. So the money I was making was nowhere near what I was making in the corporate world that I had spent 25 years building.
And there was a strange identity piece with that.
You know, I'd always been very independent, able to take care of myself if I, if I needed to, I've, you know, been married for 32 years to the same, man, who's always been very supportive, but there was a part of me that, that, that financial piece made a big
[00:13:37] Andrea: I think there's so much , to the sense of identity when it comes to, especially when it comes to people with chronic illness, cuz you're battling something very real with your health. And then you're also battling normal stuff that happens within your life.
And there are so many different facets to our identity , and one of them, especially when you're coming from being in a job that pays [00:14:00] well and being used to bringing home a paycheck that financial identity is so important. And I think , that's , a healthy thing. I don't think there's anything wrong with that at all, but it's interesting how that changes when we do things like I have to get out of this environment because of my health.
And then you don't realize, oh, that's going to pull a whole other piece of my identity out of whack that I have to then re-calculate
[00:14:31] Cyndi Lynne: It's really interesting. And if I can skip ahead in this a little bit, cuz that identity piece
is is what I work with women on now
and not just their identity. So it is a great segue, but not just the identity related to work, but their identity related to their diagnosis. Because I think you probably know people who ha who get a diagnosis who go through treatments, who are maybe chronic in their diagnosis that managing that [00:15:00] becomes a job of sorts.
And there's an identity that goes with that.
And. That identity can get comfortable. So sometimes as we move into remission or as we are cured of our disease, or as things become stable, we kind of don't know who we are again, then just like it took some time when I left corporate to figure out, okay, who is this person?
What are they doing? What do I say? When somebody asks me, you know, at a family picnic, oh, what are you doing? It's the same when someone's managing diagnosis long term or even acutely. And it's like, okay, that, that can kind of be done. And we could wrap some of that up now. Who are you?
[00:15:44] Andrea: yeah. Yeah. That's, that's absolutely something I did when I was working with, people that were newly diagnosed, it was a big question of who am I? Now that I have this, who am I now that I have MS. Who am I? Now that I have this chronic illness, but you bring up a really interesting [00:16:00] point because even though there are illnesses that will never go away, like a lot of chronic illness, there's managing it, there's managing symptoMS.
There's so many things that we can do to make ourselves better to where it's not such a disabling situation on a daily basis. And then it's another question of who am I now?
[00:16:24] Cyndi Lynne: And when you have something like MS, that can, you know, like literally come and go relatively quickly, where you have good weeks and bad weeks. And, and hopefully the good ones last longer than weeks, but there's also that, that, okay, who am I? Who am I this week? What am I going to have to do to accommodate this week?
And how does that affect people's perceptions of me, which, , we'd all like to say, I don't care. What other people think if you're going into a corporate workplace or if you have people depending on you, then yes. I have MS and I am still a dependable woman and a great [00:17:00] mom and a, a great employee, but it's figuring out what that looks like.
[00:17:05] Andrea: right. And I think you hit on something really important there it's other people and yeah, stay in your own lane. Don't worry about what other people are saying but. I feel like it's not completely possible to just shut everybody else out
[00:17:22] Cyndi Lynne: No,
[00:17:22] Andrea: about it.
And other people, what they're thinking about us can affect us in the way that they're reacting to us or what they're saying or how much they do call on us or depend on us. And that comes from a whole bunch of things that we have zero control over, which is their comfort with what they're seeing, maybe what is happening with us through no fault of our own is triggering them in some way.
And they're reminded of something else in their life that we have no idea about. And so it's this interplay between other people and yeah, I'd love to say, [00:18:00] forget it. Don't listen to anybody or don't even think about what they think about you, but.
[00:18:05] Cyndi Lynne: it matters and it impacts us and actually one of the first pieces and it's still one of the most popular pieces is, a free ebook that I have on my website. And it's how to, you know, how to communicate and maintain your privacy.
How do you, how do you determine ahead of time, who you're going to tell and what level of information you're going to share with them?
because the last thing you want to do is confide in an office mate, that, um, I, I may be in the bathroom a lot this morning because of some new medication. Can you keep an eye on the phone and know that that's going to stay between the two of you as opposed to hearing, two hours later? Oh,
I hear you have some more health probleMS from, from a stranger. So knowing, deciding ahead of time, um, what your message is,
you know, I think in the corporate world, we have PR departments and we need to be [00:19:00] our own PR department. We have things like middle drawer statements that you know, that we can have prepared
so that when
[00:19:09] Andrea: tell me more about that. What is
[00:19:10] Cyndi Lynne: oh, middle drawer statements, uh, maybe that's an old thing, but it was kind of like if there was something going on in the company, some.
[00:19:16] Andrea: Mm-hmm
[00:19:18] Cyndi Lynne: Strange stock thing or some announcement about a product, and you would get asked the middle drawer statement was the pre-written message that you could share publicly. So all of the messaging would be consistent. So I recommend, and in fact, in the ebook, there's a, a template to write out your own middle drawer statement.
So for example, if I'm recently diagnosed with MS or recently diagnosed with breast cancer, there may be people who I want to tell this information to. There may be people who I want to wait until I [00:20:00] have a treatment plan so that I can say yes, in fact, I've been diagnosed. I have a great. Team of physician and support, and my treatments are all set.
So by sharing that, instead of just saying, you know, oh Andrea, I I'm diagnosed with breast cancer. I'm communicating very clearly. I've got this under control. I'm not soliciting advice. I'm not soliciting
input and that, you know, and that kind of shuts some of that down. Whereas if I just come to you with the problem, you are going to want to help me. And I may not be actually looking for help or input at that time. I may be, you know, there's so many different stages. Uh, when we get a diagnosis, understanding, ready to move forward, decision, making all of these kinds of things and being [00:21:00] intentional about how you share your message and your information help better, uh, help people better understand.
What, if anything you're
[00:21:10] Andrea: That's the kind of thing I wish I had. I was diagnosed. In my early twenties And I went to, at that time, I actually went to a small startup and I felt like I had to tell people.
I knew, technically I didn't, but I felt like I needed to, because of the environment was so close. , at the very, very beginning, it was just two of us and then three of us. . I remember feeling like I didn't want to hold back. Like, it's almost like I was lying to them because it was such a
huge, huge part of my life, especially when I was first diagnosed.
So I wish I had had some kind of like, Hey, you don't have to tell 'em everything. Not that I was, you know, just vomiting information, but people know, people knew when I had to leave and I was like, I'm going for, an, infusion.
And it's just, it's tough because sometimes you feel like you're opening up way more [00:22:00] of your life to people who don't necessarily, they haven't really earned my trust at that point.
I just am doing it more for self preservation because I don't want
them to have a reaction about what I'm doing or think I'm being lazy or think I'm cutting out on work or think, , in a small startup think I'm going to be, , making the insurance for the entire office a mess.
[00:22:22] Cyndi Lynne: unreliable. Yeah. We have all those thoughts. And that's why being very intentional and saying, you know, especially in a, in a small group, um, You know, who needs to know if you're going to be gone. And those types of things in a larger group, it's, you know, it's much easier to have one or two close confidants, and then the wider message would be, for example, you know, for the next couple weeks on Thursday afternoons, I'm going to be out for a couple hours for a medical appointments and John's agreed to cover in the meantime.
So let him know if you need anything and he'll have access to me.[00:23:00]
And if there's any changes to the schedule, I'll let you know.
[00:23:04] Andrea: I think that's fantastic because, that rumor mill is real. And the last thing you want to do is do anything. That's going to put you in that rumor mill. And I remember thinking that that was such a tough thing to navigate, because it can get really, really messy quickly.
[00:23:25] Cyndi Lynne: Mm-hmm . And again, that's part of the exercise, um, that we do in that ebook is figuring out your kind of circles of, you know, similar to circles of, of influence
and who needs to be right there in close with you. And this even applies to, to family and friends. You don't want to, you want to be intentional about which friends you share things with immediately, for example,
because there may be people who care about you very much.
and, you know, and then you'll need to get the two boxes of Kleenexes. And you'll both end [00:24:00] up on the couch for a week, as opposed to the friend who will be like, you know, Andrea, that sucks. How can I help? What can we do about this?
Let's get moving.
And there's the friends that you, you know, we also talk about who you can count on for what, who you can ask for what help and how to ask for that help in a way that makes it very comfortable for both parties.
So it's, it's much easier for me to say, you know, Andrea, I'm open in the afternoons. If you need Dr. If you need rides anywhere to treatments, I'd be happy to take you.
[00:24:38] Andrea: I like that because that is a way to set clear boundaries. Which is something I think everybody with chronic illness has had some kind of practice with some more than others. I have found it. And a lot of people have found it a very essential part of managing not only your illness itself, but your [00:25:00] life with this
illness. And I think people like to know how they can help you.
And that also helps you because I feel like people want to help people. And it's from the best intentions, people love us, but there is so much information out there. And there are so many, you know, cousin, best friends, nephews who did something one time that cured something that maybe you have.
I mean, there is so much of that out there.
And I feel like sometimes getting that clear boundary as far as what you need help with and what you don't need help with, can cut down on just the barrage of random. Want to be helpful information about what
[00:25:46] Cyndi Lynne: mm-hmm
[00:25:47] Andrea: be doing.
[00:25:48] Cyndi Lynne:
Many people, unless until they've managed something like this are really hesitant to ask for help.
And then sometimes people don't know how to offer help. And yet here we have like long term friends that [00:26:00] just kind of don't know what to do with each other.
And then they don't have the basis for conversations going forward.
So it's much easier to say, you know, Andrea, I'm I drive right by your house on the way to the grocery store. I'm going tonight after work, what can I bring You You know, your job than to be a good receiver is to have that list handy that you can snap a photo.
And, and text it to them.
[00:26:27] Andrea: and not feel guilty about it. I think a lot of times also we, we go into the, no, I'm fine. Thank you.
Don't want to Don't want to be a burden because the feeling of being a burden, I think is a very real, I'm not saying that it's true, that we're a burden, but the feeling that we're a burden can be very real.
And sometimes it's hard to accept, like you said, do you have to receive that offer of help? Sometimes that's really hard because you feel like, well, yeah, they keep asking, but they're just being nice.
[00:26:57] Cyndi Lynne: right. Or if I ask them, maybe they can't say no. [00:27:00] So I always recommend asking very specifically as well saying, you know, I have an appointment on Tuesday afternoon, Andrea it's at 11 o'clock and I think it's going to take about an hour. Would you be able to drive me? And that gives you really clear parameters so that you can say, oh my gosh, I, you know, can I catch next time?
Because I have this at, at one o'clock and it's going to conflict
as opposed to an open statement. Well, do you think you could take me to the doctor on Tuesday then you, don't know what to say, like when, and you know, I mean, it just gets ugly.
[00:27:34] Andrea: Yeah. Yeah, it, it does. And we're talking a lot about advocating for yourself with your, close friends, family work. Talk to me about seeing it from the side of being a nurse and people advocating for theMSelves while they are navigating through healthcare.
What are some of the most effective things that they can [00:28:00] do that you've seen received?
Well on the healthcare side to advocate for theMSelves and help get through what can be a really, really complex, place
[00:28:11] Cyndi Lynne: Yeah. So the, the diagnosis is complex. The healthcare system is complex. Insurance systeMS are complex and, and sometimes it can all seem overwhelming.
And one of the ways I work with clients is actually to help them with this. So I have clients who call when they're diagnosed and they're like, okay, where do we start?
And it's as often with the acute diagnoses as it is with chronic, um, you know, we talk about, are you comfortable with the group you have, do you have a group of people assembled? So who who's on your team?
Do you feel comfortable with not only the diagnosis. but the proposed treatment in the follow up,
you know, so many people give the advice, oh, you better get a second opinion.
Maybe you should get a second opinion, [00:29:00] but people don't really know how to do that. And often they're afraid. They're like, well, I don't want to get my doctor upset. I don't want to have an adversarial relationship.
[00:29:10] Andrea: And to be fair, I think that That can happen. Not that it there's a problem asking for a second opinion, but there's a problem with maybe ego someone
[00:29:25] Cyndi Lynne: you.
[00:29:25] Andrea: that from the doctor's side,
[00:29:28] Cyndi Lynne: Right.
[00:29:28] Andrea: a very real thing.
[00:29:31] Cyndi Lynne: It's a very real fear. It doesn't, it doesn't have to be presented in that way. So for example, when I work with clients, we're very specific.
Are you unclear about the diagnosis? If you have something that's pretty. I'll say routine or common, it may not be a tricky diagnosis. And you may say, yeah, I believe, you know, this is what they say I have.
And I believe that this is what they have, they're [00:30:00] recommending this treatment. Okay. So why would a doctor recommend a particular treatment? Well, he might think it's the best for you. It might be the only one he knows about it might be the only treatment available in the facility that he has privileges in, or maybe it's the only treatment available in your city.
So if you, if you ask questions about other treatment options, you know, rather than just saying, I want a second opinion say, I, I would like to know more options for treatment. What options are here, what other options do you know of that might be available at a different facility? Are there any clinical trials going on for this right now, what's available in, in, in other cities and you'll get a real clear picture from your doctor's response.
If he is knowledgeable on this subject [00:31:00] where he says, yes, this is available here. This is a, a clinical trial one hand here, but this is really just for people who are over 65 or what, you know. So you get an idea that he knows what's going on in the field.
If there is no information forthcoming about other treatment options, then you probably want to look to a specialist. Very often we see GPS attempting to manage, , diagnoses that are considered relatively common , and medicine is very protocol based anyways. Medical doctors are very standard of care. That's legally what they must do. Standard of care protocols. , natural paths , are more held to a quality of care standard , and best practices of current times.
but you need to, you want someone who knows what the options are and then there's the potential that they can be customized for And whether that's customized for your [00:32:00] or customized for your lifestyle
[00:32:05] Andrea: I. am always a huge proponent of a specialist. And I know I come from the, , MS. Neurology type of a world, but that was always something when I worked with clients, , who were newly diagnosed and looking at their treatment plan and what their doctor was saying, I always would, , ask them, are you seeing a neurologist or are you seeing an MS specialist or , a specialist in whatever, , illness they've been diagnosed with?
Because something like the nervous, , system is such a huge. Just Universe
that I don't necessarily want somebody who knows about that. And these 500 other things I want someone who's going to say, all right, let's not think about those 500 other things.
Let's just look at what MS does, what MS effect is [00:33:00] and, and treat from there. And if you know, I mean, I just think it's really important to get as specific as possible with the person who is going to help you. Once you have a diagnosis, I know it's different, cuz I know not everybody gets a diagnosis
but I think that if you are sure on your diagnosis, go for a specialist.
[00:33:25] Cyndi Lynne: Mm-hmm
[00:33:25] Andrea: If you can,
[00:33:26] Cyndi Lynne: I have found as a nurse and as a patient, that specialists. Are more respectful and more likely to refer to other specialists. Like they are proud of the domain that they have mastered
and don't need to, prescribe as if they have all of the other domains mastered as well.
So, you have MS that's relatively well managed and now we're going to add a pregnancy to that.
Okay. Who are we going to work with [00:34:00] from that perspective? Who are we going to work with after the pregnancy? You know, that we can continue to, to bring everything back kind of online into that as much homeostasis as we can.
So, yes, I agree with that completely. When, when you can get a specialist, a specialist also offers more treatment options.
To adjust to your lifestyle. So for example, clients who have, who live in very rural areas may have to time treatments differently than someone who lives in a city close to the medical center.
You know, they simply may not be able to make those trips, even from a health perspective to someone in the energy to do, uh, a traditional, um, course of a particular therapy, a specialist is going to have a better handle on how do we modify that?
[00:34:52] Andrea: When it comes to actually being in the office. With a doctor, either [00:35:00] just getting that diagnosis, figuring out, trying to explain your symptoMS.
Maybe you're not diagnosed yet at all. What are some quick tips for people to have? Just so they can feel like they are communicating effectively advocating for theMSelves in that moment.
[00:35:18] Cyndi Lynne: Mm-hmm so I always recommend, and there's been a big wrench thrown in this recommendation over the last about two years. You'll understand why is that? You have someone with you.
And this is, this is where you don't call the friend who gets the box of Kleenex and sits on the couch with you. This is where you call the friend.
Who's like, okay, what's next? Because they will hear things you don't.
And when, when we're in fear, you know, when we're in that shock, our saturation point for, for gathering information is very finite.
And very often after people hear the word cancer or, or, I mean, it just stops
right [00:36:00] there and the doctor can continue talking about this and that and the other, you know, and, he can be very informative, but you need someone else there who is listening on your behalf.
[00:36:12] Andrea: Yes. I remember when I was diagnosed, looking at, , images of my brain and my neurologist. I remember really hearing that I was diagnosed when he said, oh no, you're on fire.
There is no doubt that you have MS. But that was not the first time he had said that he probably said it in about four different ways. And I think I was the last one in the room to be like, wait, no, hold on. What do you mean?
what are you saying?
When it's happening to you, it's proven you get tunnel vision
[00:36:43] Cyndi Lynne: Yes. No, it is.
[00:36:44] Andrea: can't, you, physically can't hear as well. You physically can't see as well. You can't process things well. And it's really, really hard for things to get
[00:36:56] Cyndi Lynne: And that's, that's completely physiological. You go into a fight or [00:37:00] flight. The blood literally leaves your brain and it's ready to go to your legs to get you the heck out of there.
So having someone else there, the other thing that I can't say enough is that if you are sitting in the doctor's office, getting this news, it is not an emergency.
[00:37:26] Andrea: Ooh. Okay. Say more about that.
[00:37:28] Cyndi Lynne: If you're wheeled in and on your back, it's an emergency,
you were already in the hospital. I'm guessing even when you heard those words, you weren't automatically wheeled off for some emergency procedure.
You had treatment
But if you're walking into the doctor's office to
get test results,
chances are, it's not an emergency
[00:37:49] Andrea: That's a really good thing
[00:37:51] Cyndi Lynne: And it's not my intent to minimize the shock of that news, but it means you can pause.[00:38:00]
You can take the breath, you can step away. You know, so unless they're calling the ambulance for you, you can take a day or two to formulate some questions you can take time. And, and what we see happening now, um, uh, a client of mine under the guise of efficiency , in the medical system, a woman who went in for a routine mammogram on her way, home from work stopped in,
got her appointment.
You know, you're sitting there till the, uh, technician looks and make sure the pictures are fine, that there isn't, that you didn't move around and squeal when they stuck you in the machine. The technician comes out and says, the doctor looked at this and there seeMS to be something suspicious.
We're going to take you down the hall and do a biopsy.
And here's this woman. With their slacks on, with the gown still on the top with their shirt, with their purse hauling down the hallway with, oh my gosh, I have breast [00:39:00] cancer. I'm supposed to pick up the kids. I wonder if I could get ahold of my husband, like all of this stuff happening to this woman and then an invasive procedure.
And I'm sure somewhere along the line, she's, you know, they put the paper in front of her and she signed, but she was just kind of marched through this. And she called because this was all said and done, and the biopsy sent, she went out in her car and sat and cried.
And I'm like, how is that care?
Anything they're going to find on a mammogram can wait a few days.
So how different would that experience have been? If they would've said to her, there's something suspicious, we would like to schedule a biopsy. Can you do this today? And she said, you know what, I'm going to make sure I'm going to go home.
I'm going to pick the kids up. I'm going to make arrangements for them tomorrow so that somebody can get them after school. My husband's going to know what's going on and I'll come back at 10 o'clock [00:40:00] tomorrow morning and we'll take care of this.
How different of a place would her mind be for an insignificant amount of time in terMS of the disease process?
[00:40:10] Andrea: And that was something that was explained to her. Not
[00:40:14] Cyndi Lynne: Right?
[00:40:14] Andrea: there's something serious, but
no, we can, we can see you in a week because we're busy, but have it explained to her like, Hey, here are your options. We can do it right now.
[00:40:24] Cyndi Lynne: right,
[00:40:24] Andrea: we can wait. And by the way, it's okay
[00:40:28] Cyndi Lynne: right.
The hospital wants to be efficient. The hospital wants to keep you in their system
because perhaps if you suspected that there was something you may go to a different center,
but right away, you're plugged into the system so that you, you don't ask questions. You've already had an invasive procedure.
You teacher, you you kind of lose all those choices.
[00:40:50] Andrea: it puts you in a very inherently vulnerable position.
[00:40:54] Cyndi Lynne: Yes.
[00:40:55] Andrea: especially if you're alone, because you just went in for a routine mammogram.
[00:40:58] Cyndi Lynne: The [00:41:00] experience for her and her whole feelings around her control over her body, her agency, over her body, her decision making process could have been so different. if she'd have known, you know, if she'd have realized this is not an emergency,
and then she wouldn't be worried. The kids would be taken care of the household is in order. And, and you find this very often, especially in men's health, because even in households that are accustomed to two incomes, socially men are still the primary breadwinners in many homes.
And to snatch them, you know, quite literally, sometimes out of the car and into a hospital bed
Is kind of devastating for the whole family.
Even if the outcome is good,
because there isn't the planning there, if somebody tells you to get your affairs in order, it sounds like in the end, and really it is, you know, what, get things lined up. Let the people, you know, you need to be away from work. [00:42:00] You know, if, if you're like me and used to go on your lunch hour, my computer was still powered up.
My lunch was still there. You know, you can't just be, uh, snatched from the earth and not have implications. So even having a little bit of power in that situation sets you up for much better thinking, um, the ability to do like my favorite ask better questions
[00:42:23] Andrea: Yeah, and I do think that's really important. It takes time. It takes confidence,
[00:42:29] Cyndi Lynne: Yes.
[00:42:30] Andrea: ask better questions. This makes me think of something that, um, you had said where, when you were in nursing, in the cardiology, unit, you would see patients who had kind of the exact same diagnoses or would in kind of the same position, but they would have very different mentalities about what was going on.
me, what do you think the difference was and was part of it, the fact that maybe some felt like they had more [00:43:00] control and troll and maybe better advocates than the other person. What would, what was the difference do you think?
[00:43:07] Cyndi Lynne: I think, looking back at it after all these years, I think the patients that did the best were the ones that the doctors considered kind of a pain in the ass.
[00:43:18] Andrea: Yeah. good news for me.
[00:43:21] Cyndi Lynne: They, they had questions. They wanted their questions answered. They didn't just go along with everything. They wanted to know what was going to happen to them. They wanted to know why that was going to happen to them. And one step removed from that when I wasn't able to give, as the nurse, when I wasn't able to provide those answers and you know, very routine things you say, okay, this is the test.
This is what it does. This is what it's going to feel like. This is about how long it takes. You'll be back in your room for lunch.
If there were things going on that I couldn't get answers to, I would think, no wonder the patient's [00:44:00] upset. You know, if I, if, if I'm not getting straight answers from the doctor, why exactly are we doing this one?
This was the path we were going down. It's like, okay, are we, are you thinking of some of some other options? Are you thinking another diagnosis? But if the patient is expected to go for a test. That's invasive. They should know why. And so that's the, the, the patients that question, the patients that, that bring their list, you know, into the
office with them, the patients who want to talk, not just to the nurse, but the doctor, um, and, and you know why it's not that they don't believe either one.
They want to make sure they get the, both the same story from both.
And that makes sense, because you want, you want to feel like there's coordinated care. You want to feel like, okay, there's a plan. And you want to feel like you're part of that plan.
[00:44:53] Andrea: and you want to feel like people are telling you the whole story
and not just the spin or the part that they [00:45:00] feel like they should tell you, but they don't want to tell you something else because they don't want you to react or freak out about something. You want to make sure that you're hearing everything in a very straightforward manner.
do put myself in that pain, in the ass patient category proudly.
But I also, I think the good healthcare teaMS don't care, they want to answer questions. And I think part of what makes it makes me feel like, um, Proudly a pain in the ass is that by asking a lot of questions, you are slowing down the process, you were telling them like, whoa, whoa, whoa, hold on.
Don't like drop the information and run. Cuz you have another patient, stay, explain this, tell me this. And let me sit with it for a second and think about it. Because a lot of times you're processing information about you
[00:45:56] Cyndi Lynne: Yes. Mm-hmm
[00:45:57] Andrea: and in the same instance, you're trying to be [00:46:00] logical and separated enough to be able to ask good questions
about what's next or what's going on or why do you think this?
And so I think part of it is we don't, we feel that rush of, you know, they gotta come in, come out and you know, you get your 10 minutes and you feel. I know, sometimes I feel like
[00:46:21] Cyndi Lynne: standing in front of the door.
[00:46:22] Andrea: Yeah, exactly. Exactly. We're not done here and that's hard to do.
I think for some people I know when I was younger,
[00:46:30] Cyndi Lynne: Yeah. Mm-hmm
[00:46:31] Andrea: me to do. How do you, or what do you tell people developing we talked about before, which is the confidence to be able to not just ask questions, but make sure they're answered.
[00:46:43] Cyndi Lynne: right.
So the writing the questions down and making them good questions.
So rather than why do I have to take this pill? You know, is it important that it's every morning or do I just have to take it once a day, you know, ask specific [00:47:00] questions that are relevant to your lifestyle. So you don't have to give the whole story of why you want to know, but you know, if, if you are a person who does intermittent fasting and you eat between 12 and six and there's pills that you're supposed to take at six in the morning with food, okay, let's talk about that.
Can we take this without food? Can we shift the, the schedule differently? how how can I make this work? You know, not, I don't want to take your pills. How can I make this work in a lifestyle? That's very important to me
and that's contributing to my
[00:47:36] Andrea: Yeah, a lot of times I think that there is protocol. And so the doctor will say, this is protocol, or this is how you do it, but the second you say, okay, hold on.
That's not going to work for me then all of a sudden it's like, oh, well it's not, I mean, you could take it whenever you want just every 24 hours or
[00:47:55] Cyndi Lynne: Yeah.
[00:47:55] Andrea: you know? And so it's first, I feel like the first thing that's [00:48:00] given to you is just going to be the rote protocol.
[00:48:02] Cyndi Lynne: routine,
[00:48:03] Andrea: it's up to you to start asking questions or saying, speaking up for yourself and saying like, Hey, that doesn't work for me.
How do we make it work for you
or for me? And a lot of times it's a lot easier than you think it is.
[00:48:13] Cyndi Lynne: It is. And it's not, you know, it doesn't have to be scary. And, and
in that moment of taking them pause, you're allowing them to think as well.
And you know, I don't, it's, it's not to bash on these physicians I think part of the reason, like they they're there to provide solutions and they want to get to that, that solution that they want to provide, or that is statistically the first solution to provide, you know, based on standard of care. And it's up to you to say, okay, wait a minute. Now you say that I have this. Tell me a little bit more about the diagnosis.
And then this is the medication you're prescribing. What does this, do? You know, does this shrink a tumor? Does this, or [00:49:00] okay. You said I have to have radiation and chemo. Which one are we going to do first?
And why? Why would we do one first before the other?
[00:49:07] Andrea: So we've talked a lot about navigating healthcare, being your own advocate, having other people advocate, what that looks like in the work environment. But one thing that you're very clear on, I also ascribe to this is that your diagnosis is only part of your life. This is not your entire life. Some at some point, I think it takes more center stage.
If you're trying to figure out something, or you have a symptom that pops up, or you have something else that pops up and you're, you could be really focused on it, which is fine, but it still doesn't mean that that's your life.
[00:49:42] Cyndi Lynne: Right? Mm.
[00:49:43] Andrea: that's who you are. how do you help people who may feel like this is their entire life and affected their entire life and infecting everything from their schedule to their identity?
How do you help them realize like, no, this is only part of who [00:50:00] you are.
[00:50:01] Cyndi Lynne: So that's why the heal your life community came in. I saw that need, and I, I wanted to provide it in a very accessible way. So each month there's a different topic covered in terMS of creating your new identity and your new life. one of the things that I hear women say so often is I just want my old life back, but you know, how much the experiences you've been through have transformed you.
And they've actually grown you as a person
and that old life doesn't fit anymore.
[00:50:33] Andrea: It it's almost impossible. Like you,, you cannot go back.
[00:50:36] Cyndi Lynne: Right? You're, you're bigger than that now.
And so now it's like, okay, now what? And so very often women will stay in, in the, in the comfort of familiarity of their diagnosis. Even if their diagnosis is very uncomfortable, and then as things progress and you may be stabilize and you're in a maintenance kind of phase, a remission kind of phase, it's like, okay, I was spending, [00:51:00] you know, 16 hours a day managing this
now, what, what does that look like?
What hobbies do I want now? You know, how do I get my sleep back?
What about my body image? It's changed from all of this. I get to decide now how I want to dress. And not just because I want to camouflage a certain feature or because I have to wear wigs for a while or, or don't have to wear wigs, but it's that to sit?
Like, what do I want my look to be? And in the community, we get to play with that for a month and we do it in very bite size pieces. It's at your own pace.
There's resources, there's, um, journaling prompts, but it's kind of a place for you to go and, and place. So we rebuild your, your, you know, we heal your body image.
We heal your self [00:52:00] image. All right. Just like, you know, circling all the way back to that. Who am I now that I'm not in corporate full-time
what is my self image? Okay. I, I didn't have a choice about adjusting my self image to a person with MS. What do I want it to be going forward?
A person who has this, that, and the other thing.
And, oh, also by the way, has MS. You know,
[00:52:26] Andrea: right.
[00:52:27] Cyndi Lynne: have to take center stage all the time, even if there's weeks that it props up pretty heavily. You you're still building the, you that you want to live in all of the time.
[00:52:38] Andrea: Mm-hmm , it's the idea of what I think is kind of the myth of balance.
You don't have everything perfectly evened out all the time. Sometimes things take center stage, but then I think it's a skill to let it fade into the background. If it doesn't
[00:52:57] Cyndi Lynne: Yes.
[00:52:58] Andrea: stage. And I think with something [00:53:00] serious as a chronic illness, that can be hard to let go of
[00:53:04] Cyndi Lynne: Mm-hmm
[00:53:05] Andrea: it can feel like you're not doing everything or maybe you're in denial or something like that.
[00:53:10] Cyndi Lynne: oh, that denial. yes,
[00:53:13] Andrea: to not focus so much on it. Oh,
[00:53:15] Cyndi Lynne: absolutely. Upcoming next month in the, um, heal your life community is, uh, exiting the sick role.
And it's a, controversial area and, and it's also very challenging for people who have something like MS. That you can go along perfectly fine.
Average, Joe, and then. Something comes along, pulls the rug out from underneath you and you require a bit more management there. And it's like, well, maybe it's not safe to let people expect me to be normal. You know, maybe I'll just hang onto this identity a little bit, because then if I have a bad week, I don't have to worry about letting them down because they don't expect me to be, you know, quote, I I'm making the air quotes here, normal, you know, [00:54:00] when maybe 80% of the time you're operating, like any other person.
So, and, and that, you know, it's adjusted for, for work situations for home and family, um, but it's that, you know, what do we want our lives to look like now?
And we get to decide, and it's exciting.
Oh, thank you.
[00:54:18] Andrea: Ah, I love that we absolutely get to decide and it can be. Really empowering, really exciting and really, really wonderful because it sets us on a whole new journey, and we don't know where it's going to end and it can go into some really fantastic new roles, new identities, new everything. Cindy, Lynn, thank you so much.
I really appreciate you coming and sharing all of this knowledge. I know it's helped me a lot. I know it's helped people listening a lot and it's been a pleasure listening to you very clearly. Just [00:55:00]
[00:55:08] Cyndi Lynne: Well,
thank you for letting me, share my excitement about this message. I appreciate you.
Thank you for tuning into this episode of Live Your Life, Not Your Diagnosis. If you like the show, don't be shy. Please give us a five-star rating and review. Follow us on apple podcast, Amazon music or wherever you're listening right now. To see complete show notes and resources mentioned in this episode
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About Live Your Life, Not Your Diagnosis
Hear inspiring discussions with people living with chronic illness. These people went after their passions and big goals -even when everyone told them they couldn’t. Listen to stories of resilience and gratitude in the face of uncertainty.
I’m your host, Andrea W. Hanson, Author, Motivational Speaker, and Autoimmune Rebel living with multiple sclerosis. You’ll not only fall in love with these guests, but you’ll soak up positive mindset tips and ideas to find your own unique path to success.