Finding Hope in Battling Endometriosis and Long-COVID With Alysia J Dagrosa

Speaker 1:
0:00

y'all. So get ready. Last episode we talked about expectations and how that shows up in your business, how it shows up in your mindset about being able to grow in your business, and this is kind of an interesting one, too, around expectations, but more specifically around the topic of endometriosis. What do you do when everyone else has given up on you? What do you do? Where do you buckle down? Where do you find hope? Where do you lean into?

Speaker 1:
0:28

In this episode, this is definitely a story of finding hope, finding grit, finding support, also leaning into community, and we're talking to Alyssa, who is a long COVID survivor as well as an endometriosis warrior. That's actually where we meet her in this story, initially talking about her journey with endometriosis, which I wanted to feature in this month because it is Endometriosis Awareness Month and, if you didn't know by now, I'm an endometriosis warrior and we get into that a lot in this episode. But you want to tune in because we share with you some tools, some people, some hope on how you can manage and live your life living with chronic illness and endometriosis, especially if you feel like others have just given up or they don't even understand right. This is such an inspiring episode, also tangible things to take away from. So be sure to stay tuned and check out this little sneak peek of Alyssa's story before we hop all into this conversation.

Speaker 2:
1:35

I came back from Israel. I helped out with the Endo Summit. Again we had hundreds of people. It was a fabulous event. I had all these plans. I had started studying for my BCPA exam. I was in the depths of it. I was getting ready to test. Covid hit. My life changed.

Speaker 1:
1:58

Welcome to Crafted to Thrive, the globally ranked podcast for entrepreneurs living with chronic illness. I'm your host, nikita Williams, and after being diagnosed with multiple chronic illnesses myself, I figured out the surprisingly simple missing links to growing a profitable business without compromising my health. Since then, I've helped dozens of women just like you learn how to do the same. If you're ready to own your story and create a thriving business that aligns with your health and well-being, you're in the right place. Together, we're shifting the narrative of what's possible for entrepreneurs with chronic illness.

Speaker 1:
2:38

This is Crafted to Thrive is Crafted to Thrive. I am so excited to have Alyssa. Am I saying that right? Hon, it's Alyssia, alyssia. I thought I was like I don't think I'm saying that right the moment I said it. Okay, alyssia. I met her at the Chronic Con event in New York, brooklyn, which I should do a whole episode talking a little bit more breaking down why that was so amazing. But I don't even know. I think we were just walking in the same area and I was like, hey, how are you? And we kind of just started chatting and you shared that you are a fellow Indo warrior and now life, and where you are in life. So I can't wait for everyone to talk, to learn more about you and kind of get to know your story and what your advocacy is now in life. So please tell us a little bit about where you are, what you're doing now and all that Jess.

Speaker 2:
3:39

Okay, sure, sure, sure, and it was the yellow pants.

Speaker 1:
3:42

Girl yes, yes, you was wearing some yellow pants.

Speaker 2:
3:46

They were so fire and it was like a beacon. It was just the yellow pants were just bringing people towards me. I love it. But yeah, hi, my name is Alicia DeGrossa. I'm a board certified patient advocate. I've been board certified patient advocate for two years now. I'm also a certified full spectrum doula. I'm working with the citywide doula initiative right now, so I'm taking a couple clients here and there with them and that's all community doula work. So what does that mean? Those are clients who are in underserved populations. There's a certain income threshold as well for them to qualify for the program, and the program overall worked with a lot of first-time moms and high-risk. And the high-risk moms are really more my niche, if you will, because, as you know, I'm in the endoverse. How I got to be a board certified patient advocate? Because I mainly serve the endometriosis population. The doula was kind of an add on so that I could better serve that population.

Speaker 1:
4:55

I mean such important work. First and foremost, when I met you, as like I didn't know that was a thing, like there's so many things that I didn't know that was a thing, like there's so many things that I didn't know was a thing until Chronicon, I'm just like always, I'm so thankful I have this community and meet people like you and just so many things you just don't know about. But to give the audience a bit of context, what does being a certified patient advocate actually mean as well?

Speaker 2:
5:27

patient advocate actually mean as well. So, similarly to doctors, I have a board that I am beholden to. There are a lot of advocates in a lot of different ways, but instead of just being just free and out into the world, I have a set of ethics that I have to be held accountable to. There are some tenants that we are required to uphold certain standards. I have to be non-biased. I have to be open to everyone If I see suffering anywhere in the world. One of our tenants is that I am required to say something and being a board-certified patient advocate also, there's a community involved in that as well, and we support each other.

Speaker 2:
6:06

Reason why I'm a BCPA is because of Heather Guidon. Anything about the endo community. She is one of the OGs. She is absolutely the goat. She's one of the loudest voices in endometriosis. She's my mentor. So you know, I wanted to make sure I was serving people from a place of knowledge. I wanted to make sure I was serving people from a place of peer reviewed science. And so, because she's a BCPA, I was like, okay, well, if Heather's a BCPA, I should do that as well. I went and I did. I studied, she gave me a. I should post it somewhere, the letter of recommendation that she wrote to the board. It was so heartfelt and I appreciate all the work that she does and time that she puts out for anyone, doesn't matter what level, how long you've been in the advocacy world, she will always take her time to speak to you and she.

Speaker 1:
7:02

I love Heather, oh I love that and I love that it's such a loud voice to help women not just women, just people in general to be seen and heard in the health care industry in general, the wellness world Right. And that kind of brings me to my first question is what has been your journey to now with your own, you know, health and wellness?

Speaker 2:
7:30

So I struggled with endo for 20 years, which is not an uncommon story. You know, I had symptoms right away from my first period, at age 12. I was diagnosed or, you know, presumed diagnosed, because I didn't have any surgery at 19. But that's when I first heard the word endo and at 32, the age when I finally had my big endometriosis surgery I had excision. I'm very, very fortunate to blessed and highly favored to be a one and done, because there are many folks that I know who have many surgeries, many, you know, ablations that didn't work. But I went and I saw Dr Cenervo. He's the man, he is the man top echelon.

Speaker 2:
8:20

I traveled from New York to Atlanta because I was a thoracic case and we all know Dr Cernervo is the guy to see if you have and what does thoracic case mean? I had endo in my right lung and on my diaphragm, and so that's why I went and took the leap of faith and went to Atlanta and had my surgery, and that was just five years ago. I just celebrated my five year anniversary last week and I have been symptom free since and I remember. So that was 2018. That was an interesting year. I had a lot of surgery that year ending with that major surgery. The other surgeries were not endo related. It was a banner year.

Speaker 1:
9:07

Banner year usually I feel like surgery surgeries are not a one in like there's a lot of things that are happening in your body, usually before that that you're dealing with two of theirs morbidities, yeah, exactly so. Yeah, totally makes sense yeah.

Speaker 2:
9:23

So I had three non-related surgeries leading up. I'd never had surgery in my life and all of a sudden I had a year where I had four surgeries, ending with the big one, and that was five hour surgery in Atlanta. And I remember that year I was not as vocal as I am now, for sure, but I was still vocal about my journey and everyone was like you should be an advocate, you should be an advocate. And I was like no, I don't want to do that. I'm a chef, I am a pastry chef, I own my own business. I was like why would I want to do? I've got this, I'm running a successful business. I'm about to, you know, get rid of this problem. Why should I be an advocate and get rid of this problem? Why should I be an advocate? And then life lifed. I love that Life lifed. Life really lifed hard, and a whole bunch of things happened. And so for my 33rd birthday, I decided to take a pilgrimage and I lived in Israel for a while.

Speaker 1:
10:24

Wow.

Speaker 2:
10:25

If you know about the story, the woman who bled for 12 years that story really resonated with me. It does with me too Right, it was 12 years for me, from diagnosis to proper care 12 years.

Speaker 1:
10:41

Yeah.

Speaker 2:
10:42

And you know, we think maybe she had endo, maybe she had a deno, maybe she had some combination of all of these things. And you know it talks about she spent all her money right, all of her money on doctors. She went to see everyone, she saw all the priests and they only made it worse.

Speaker 1:
11:00

Every time I read that account, I'm in tears. I'm in tears.

Speaker 2:
11:05

Right. So that story led me to decide to go to Israel and it was originally supposed to be a 33 day trip. I extended my trip. I was there for a little more than two months. I had an apartment in Nazareth. I had an apartment in Nazareth. Heather gave me the information for the main endo clinic there in Tel Aviv. I called them, I set up an appointment. I got to meet their head surgeon I guess it's a one-on-one, me and him. We sat down, we talked, he introduced me to all these advocates in Israel. So I extended my trip. I stayed in Tel Aviv. I lived out of a hostel after I gave up my apartment in Nazareth. So I lived out of a hostel in Tel Aviv and that's where it started.

Speaker 1:
11:51

Wow.

Speaker 2:
11:52

That's where the advocacy journey started.

Speaker 1:
11:55

Wow, I'm betting you learned so much there about so many things.

Speaker 2:
12:00

So many things.

Speaker 2:
12:01

So, many things Like the original trip was okay. Well, because they call 33, they call you Jesus here, right? So that's why, for my 33rd, that's why I decided to take this pilgrimage, I went everywhere. Jesus went in order because particular. And, yeah, I visited where he met with the woman and she touched his hem and in that location now is there's an organization, it's in Magdala, it's called the Magdalena organization and it's run by women and they, you know, they've got their tchotchkes and things that they sell and there's like a ticket price to get in and all of that money goes towards women's health. That's what's happening in the place where she touched his hem.

Speaker 1:
13:00

It's so amazing to me the different stories of women who have been diagnosed with endometriosis and how long it has taken us to actually get to. Many of us are still dealing with it, like with me. I still wrestle with it, as not as much as before I had my surgery, but it definitely is not always a one and done experience. Oh, absolutely, and I almost find it's kind of rare that that is a one.

Speaker 2:
13:27

I understand that I'm a rare case.

Speaker 1:
13:30

But I think it's powerful to know that you took that journey and I want to talk a little bit, too, about what was the change like. What motivated you to go from it sounds like you know, in your pastry chef business, your pastry business, you were doing well to then pivot into this advocacy work, other than the fact that you became the patient and then the patient needed the advocacy like you needed the advocacy for yourself. But what shifted for you so much so that that needed to happen? Was it more of a challenge to do that work? As a woman living through some of these challenges, what was the, I guess the question I'm asking you? What was the moment of the brink of like, hey, my life is going to look completely different now?

Speaker 2:
14:19

Before I had left, I had been asked to speak at the Endometriosis summit and I met all kinds of different women at different levels, different stages, looking for a surgeon, already had surgery, already had 14 surgeries, whatever the situation may be, and my one little talk resonated with so many people. And then, when I went to Israel and I went, went to that place and I sat on top of these mountains and I climbed all these places and I had a lot and I went by myself, mind you, I was there by myself, which is scary, just saying yes, I lived by myself.

Speaker 2:
14:59

I traveled by bus because I don't drive, I'm a typical New Yorker, I don't. I traveled by bus. A typical New Yorker, I don't. I traveled by bus, and a lot of these bus drivers don't speak any English.

Speaker 2:
15:08

But to all of these different you know locations where he drove the pigs out of um the demons out of the pigs, where he multiplied the fish, I even listen, the sea of Galilee is one of my favorite places, even listen, the Sea of Galilee is one of my favorite places and it was probably on the shores of Sea of Galilee. Yeah, yeah, yeah, that's where it is. On the shores of Galilee is where it hit me and I'm like, listen, blessed and highly favored to be in a position where I was able to do a one and done, which is the goal for everybody, right, and it was so difficult for me to get the information and it's so difficult for most people to get the correct information to, because there's so much misinformation out there, so we through all of that stuff to get access, access to proper care. I was like I can't keep this to myself.

Speaker 1:
16:07

Yeah.

Speaker 2:
16:08

I can't keep this to myself. There are one in 10, right. And how many women do you know? That's just one in 10 women, we know. We know now that you know it's very rare but men can get it and there are lots of different folks who can get endometriosis, but it's one in 10 women. And how many women do you know? So you know that you're not the only one in your circle who has it. Yeah, and by speaking out and there are a lot of people who don't feel comfortable, it's not their calling to speak out, it's not whatever, whatever someone's's situation is why they don't speak out. It's not their time, it's not their place, whatever the situation is. Because people come to me privately so often and they're like thank you so much for speaking. Because of you, I was able to do x, y and z and improve my health yeah because of you, I felt like I wasn't alone.

Speaker 2:
17:05

Because of you, I realized that I wasn't an oddity. Mm-hmm because of you, I don't have to suffer in silence.

Speaker 1:
17:13

Yeah.

Speaker 2:
17:14

And I said to myself I was there and I. And there's something about Israel that, like, really makes all of your emotions more intense. Whatever you're feeling, the highs are higher, the lows are lower, some something about that place. And so I wrestled, I wrestled, I wrestled, I wrestled what am I going to do when I get home?

Speaker 1:
17:36

wrestled, I wrestled, I wrestled what am I gonna do when I get home? Because I bought a one-way ticket. Mind you, girl, you were like I'm just going. Okay, that's all you need to know. I'm going.

Speaker 2:
17:43

I'm going, I don't know when I'm coming back, I don't know who I'm gonna be when I come back. I don't know what I'm gonna do when I come back. But I'm going, and so I wrestled, I wrestled with every single day what am I going to do when I get home? Is this what I need to be doing? And that was it. I was it. And then, once I got to that place of clarity, the whole trip changed. The whole trip changed.

Speaker 1:
18:07

It is so true and I love that you shared that.

Speaker 1:
18:11

I've had people ask me because part of what I do is helping people share their story right and to use it as a way of leverage for growth, for community, for resource you know, resource, finding, all of these different kinds of things and people always ask me well, nikita, you do it so easily, like you talk about your story so easily, and I'm like yo, this is for everybody. Like you telling your story this deeply, you have to want to do it one and you have to want to tell it in a way that it does serve others, and it's not that it's a wrong or right way of doing it, but you have to make that decision for yourself and to your point. No one can decide that for you. But also, leaning into the people who are telling their stories is helpful too, and so that's why there has to be kind of like this mix of people who are open and sharing their stories and some who just need to receive those stories and be served, and that's okay, right, because that's a powerful story to share, completely different. Everyone's story is so different and it will hit someone differently based on where they are in that journey. So thank you so much for sharing that.

Speaker 1:
19:24

Where are you, health wise, today?

Speaker 2:
19:27

Where am I health wise, while I have zero endometriosis symptoms? I have zero pains. I can breathe, you know, because that's thoracic endo.

Speaker 1:
19:41

We'll take your breath oh, that's one thing I wanted to say. Y'all heard where that endometriosis I always have to. I always like to bring this out. Endometriosis is not just a woman parts issue.

Speaker 2:
19:53

Okay, it's not just a woman parts issue. Ok, this is not just a whole body system.

Speaker 1:
20:00

Right, and so that is a huge one that I feel like I always like to make sure that I clarify in these conversations, because we only think, oh, my period or I'm having cramps, I'm like. No, sometimes you have an. Often more recent research is showing that it's more beyond those parts of a woman's reproductive system. So it's not just a reproductive system situation, it's a whole systematic body problem. And so just know that, yes, you could very much well have endo on your, on your lungs, on your kidneys, on so many different areas, and so don't let a doctor tell you that that's not true. Just saying they.

Speaker 2:
20:40

They tried to misdiagnose me with COPD. I did not have COPD, I had endo in my chest and there was a period of time where I was wheelchair bound or rather using a wheelchair, not bound by it, because it helped me move when I needed it To. A year later, climbing mountains in Israel, and I remember there was one particular, the Mount of Transfiguration, and when I had researched going there, I thought it was going to be an easy nature walk. It was not A full-fledged hike and at one point in time'm climbing I'm literally climbing a mountain and I go. Why is this happening to me? And then I thought to myself no, no, no. God put you on this mountain for a reason.

Speaker 2:
21:24

This time last year you would not have been able to do it take a deep breath, because you could not do that this time last year. Take a deep breath, I stopped myself. I took a deep breath and I kept climbing. But where, where am I now?

Speaker 1:
21:36

I know.

Speaker 2:
21:37

So I did all of these things. I came back from Israel. I helped out with the endosummit. Again, we had hundreds of people. It was a fabulous event.

Speaker 2:
21:48

I had all these plans. I had started. I had started studying for my BCPA exam. I was, you know, in the depths of it. I was getting ready to test. Covid hit. My life changed. I went from the healthiest I'd ever been in my life to the lowest, lowest, lowest possible depths. I had two strokes from COVID Over the last three years. I've had not one, not two, not three. I had seven near-death experiences over the last year. I'm improving.

Speaker 2:
22:24

I'm able to sit here in front of you today and talk. I do walk with a mobility aid, but I can walk. I can speak. Sometimes I have trouble speaking, sometimes my words don't come, but I can speak. I can eat.

Speaker 2:
22:42

I can't eat all the things I want to eat because I've got some paralysis still in the esophagus, which is I don't want to bring us down just a moment. I don't have full use of my right hand anymore. Ot has gotten me in a great place, but I can't do that fine skill work that I used to as a chef. As a chef, not being able to use my right hand properly, not being able to eat the things I want to eat, not being able to taste the way I used to taste. It's a lot.

Speaker 2:
23:19

And thank God I'm no longer on the chef trajectory, because if I was still trying to be a chef as my career, this would be really devastating. I mean, it's got a level of devastation to it even as an advocate. But if I was trying to make a living as a chef right now, that would be literally impossible. So God ordered my steps before I took them Right, and our good friend Shannon, who makes all those wonderful T-shirts. She sent me one with a. It's got a brain on one side and flowers on the other and it says I'm'm here, I'm still here. So that's where I am right now.

Speaker 1:
24:01

I'm still here and wonderfully, all the things.

Speaker 1:
24:08

Wonderfully, I mean, when I met you in May which is crazy to say that that was just like a couple like a few months ago.

Speaker 1:
24:16

We're in September, almost October at this point but I felt like when I met you you had such, lived a lot of life real, quick, right, and I've had people tell me that about me.

Speaker 1:
24:32

But there's like maybe another person that I've met that is around the same generation of me that about me. But there's like maybe another person that I've met that is around the same generation of me that I truly felt that way, like instantly, from just a sentence of a word, like oh, you live some, you live some life and you've had to make some decisions about life and choosing how you want to see life. So I'm curious what has been? Because this is not like you said, this is like we're we ain't y'all know I'm not on the show to talk about like isn't we real here? Like this is not easy, this is not unicorns and rainbows, this is real, real life. That when real life happens and life is hard, like beyond hard, to be brave enough to choose to still be here, what has been the mental mindset work you've had to lean into most to still be here listen.

Speaker 2:
25:36

But god, because what you, what you just said, the fortitude it has taken, fortitude it has taken to still be here because there were some, there were some dark times. There were some times when the doctor, last year, the doctors gave up on me. There was a period where they were sure I was gonna get better and last year they, they gave up on me. But God did, god didn't, and I'm still here because of that. I don't know if you watched the Chosen. Oh girl, you gotta watch the Chosen.

Speaker 2:
26:10

Chosen got me through some dark times and I don't watch it. I don't just binge it because of what happened to me earlier in in my COVID journey. I first found it and I could only watch so much at a time, and so what ended up happening was, whenever I was in a really dark place, I was like, all right, I'm going to watch Chosen, and whatever that episode was was the exact words from God that I needed to hear, and so I don't watch it. I don't just binge it. When it comes on my heart to watch it, I watch it. I'm like, okay, I hear you, I hear you, I hear you.

Speaker 2:
26:50

And that's what helped me, not just the Chosen, but I listen to a lot of gospel music and I sing it out loud and I cry, and then I listen to the more uplifting ones and then I sing it out loud and I rejoice and I go through that cycle and there's a scripture from Esther and it talks about hard work and this work you know we do is hard and this work, this work you know we do, is hard and it's important for us to do it right, because someone else could and someone else probably will. But consider this what if you were chosen for such a time?

Speaker 1:
27:30

as this.

Speaker 2:
27:34

Yeah, and again it goes back to the chosen. You got to get up on my Jesus show, girl.

Speaker 1:
27:40

Well.

Speaker 1:
27:41

I mean, how is life, life, work life now Like what's working life now? What does that look like? I know, Cause I follow you on Instagram. I know you you're still going through the rehab and and getting to a new place, like the new, new normal right For you physically. So how are you finding, you know? I like to say harmony more than balance, between taking care of yourself to get to the place you want to, or be at the place you are, and financially take care of the things you need to or do the work that you're doing. What has been some systems or mindset or work or help that you've been leaning more into for this season?

Speaker 2:
28:29

Right, right, right. So pacing myself is a big, big, big thing. The amount of work I'm doing right now I wouldn't even call it part time, quarter time, because part time is 20 hours a week I'm doing maybe 20 hours a month because it's really, it's more of a stipend, honestly, kind of situation that I'm doing with the doula work and I try, I try to doula the way other people doula for a couple months and it did not work.

Speaker 1:
28:59

Why did it work? Tell me, Alicia.

Speaker 2:
29:04

It did not work. I don't know what I thought I was doing. I don't know what I thought I was doing doing and I had to dig deep and do some soul searching and try to figure out what I was going to do. Because I was, I was doing an apprentice program and I was like I want to finish this program because once I finished the program, which I just completed, and I all I have to do right now is file some paperwork and I will be have the more advanced doula certification and I will be have the more advanced doula certification no-transcript decision I felt I needed to make, but I needed to put my health first and I said no and I sent them an email and immediately the next morning I get a call Alicia, what's going on?

Speaker 2:
30:32

what's going on? And I was like well, listen, listen, this is why. And they were like listen, we don't want to pressure you, but we really enjoy having you on the team and we're willing to work with whatever it is you need. And I don't know about you, but a lot of jobs aren't willing to give you the kinds of accommodations, but a lot of jobs aren't willing to give you the kinds of accommodations. So, even though it's only a little bit of work and it's only a little bit of money as a result, I signed my contract because they're willing to work with me.

Speaker 2:
31:06

They're like listen, your health is first. If you have to do half as much as all the other doulas do, that's fine. If you need to do less, that's fine. Once you're on the team team, you bring a level of expertise that we wouldn't have if you weren't here. We see you as being a mentor later on to get your nut because, like you, have to have a certain number of births before you can be a mentor.

Speaker 2:
31:30

They're like we can really see you being a mentor and your health is important to us. And that was so important that they said and it wasn't just one, they then made um, had me sit with the that was my supervisor and then supervisor above that, they had me sit with the upper level supervisor and she said the same thing. She said listen, your health is important to us and in a world right now where a lot of other people's health isn't important to anybody else and they're not interested in safeguarding your health, to have an employer tell you your health is important to us, that was big to me and I was like, okay, I'm going to go ahead and I'm going to sign a new contract, because I can't imagine getting the level of accommodation that they're giving me right now anywhere else.

Speaker 1:
32:17

Yeah.

Speaker 2:
32:18

That's awesome.

Speaker 1:
32:19

Yeah, I think the lesson that I hear in that and it's scary, and I think that's part of what you're saying. It's scary to put your health first at times for the realization of what that actually might mean or what that might look like, especially in a financial sense. But it's so interesting. I find more and more stories and especially the women that I have had on the show who have said that where it's usually 90% of the time in your favor. I think the reason why is that people in general will not care about your health if you don't.

Speaker 2:
32:54

Ain't that the truth? Because I work myself crazy through all that endo pain, through not being able to breathe, with my business and I found a lot of my clients didn't care. They didn't care if I you know. Oh, you're late, I don't what's going on with you. Oh, I'm having trouble breathing. Okay, Well, you're late. I don't know what's going on with you.

Speaker 1:
33:16

Oh, I'm having trouble breathing, ok well you're late, what?

Speaker 2:
33:20

Or? Ok, hey, my team is going to have to bring the cake. They're running behind. I'm going to the ER. Oh well, you knew you were feeling sick this morning. How come you didn't tell us?

Speaker 1:
33:37

What, and it's really true People will not care about your health if you don't. Yeah, it's so empowering and also important to note that that's okay to stand your ground and say and put that out there and see what happens. You never know, you know. You never know until you say it. Never know until you say it for certain you don't. And yes, I do think in some corporate environments, in certain circumstances, you do have to be a little bit more strategic with how you take care of you, just because of you know the social things that happen in the world. But ultimately, at the end of the day, do you still want to be here and you know later, like you know, do you want to still be here later to function, to be an experienced life. So thank you for sharing that. I think that's a huge thing. I think I love to know what has been some fears you've had to overcome with working in this new way of working right, because it's not the way you probably would have wanted to work, or things like that.

Speaker 2:
34:34

Right, and I certainly can't be as physical of a doula as some of the others doing that like hardcore massage. I'll do some massage, but I'm not not the way some like literally hold up the ladies. I can't. I can't do that. Some of my fears of you know I need to come up with a better word because I don't want to say that my body's been unreliable because it's been there for me. You know what I mean. It's supported me through all of this and it survives. But sometimes it gives out, sometimes it calls for rest, sometimes it asks for rest, and I've been nervous that I'll be at a birth or something and my body will be like ha ha ha. No, we're not, we're done, we're done for today. I've been very, very nervous about that. I've been nervous about being able to keep up the pace, but now that they've lessened my workload substantially, that fear is at least alleviated. I'm also nervous, very, very nervous, about catching COVID again, because I actually had it twice and the second time I had it caused a really, really bad setback. And so I do have this trepidation of catching COVID again and wanting to be safe in the work that I do. There's even more trepidation now that people aren't masking anymore and we've got a surge going on. So these are my trepidations having a setback, having a setback in doing the work I don't know.

Speaker 2:
36:13

There's so many things I want to do, there's so many things I want to do with my life, with this work, with everything, and it's hard to stay still, it's hard to just rest, and I've learned that rest is important. It's finding the harmony. I'm working on that. I'm working on that right now. I'm trying to find the correct balances of how much work I can do, the correct balances of how much work I can do, how much rest I need.

Speaker 2:
36:51

I watched an interview yesterday where the doctor was saying, when it comes to long COVID which is what I have, and the post-exertional malaise that you get from doing things it says that list of things you want to do for the day, look at that list, cut it in half. And the amount of things you want to do for the day, look at that list, cut it in half. And the amount of rest you think you need to accomplish those things, double it. I'm learning to, to figure out what my limits are and and and work within them so that I can continue to do this work later on so I can have that longevity and also so that I'm serving my clients in a way that they get the best of me.

Speaker 1:
37:29

I love that and I know that struggle is real. I think anyone who's living with chronic illness in general, that's one of the biggest and hardest lessons, right, because we enjoy what most of us, if you have the privilege or the blessing to be doing something you truly enjoy, like rest feels like really not what we want to be doing, like it's really not what we want to be doing. But I've learned for myself personally, like rest is not only required. It is ultimately giving me more, right, it's giving me more than I would have if I have, if I don't rest. Even though it's annoying at times, right, even though it's annoying when you're like, but I want, and it's like, yeah, but it's okay and your body is actually doing, the thing that I've learned to appreciate is that my body is actually trying to help me live longer when it's telling me to rest not the truth and when I push it I say she, she be like girl.

Speaker 1:
38:34

Look, I told you you need to sit your butt down. I told you.

Speaker 2:
38:38

I told you right and it's not that so. So you're right. Like I said, it's not that my body isn't reliable, it's just asking for what she needs and I just have to listen. I have to stop trying to push her like a machine and realize, you know some things that it needs extra assistance with, and that's okay.

Speaker 1:
39:06

That's okay. Well, I appreciate you so much for coming and sharing your story. What are some things in your, your world, that you want to share, that's coming up or that you want to bring attention to?

Speaker 2:
39:21

Well, follow me on Instagram. It's at Tantylis T-n-t-i-e-l-y-s. I am going to be having um, I've got a lot I got. I got some art projects coming soon and also, um, an amazon storefront that's in the works. One of my big things that I I love to do is help prepare people for surgery. I want to be what I wish I had, and so I don't want anyone to get blindsided by anything and I want to make sure they have all the things that they need so that they can go through the experience as comfortably as possible. So the things that are going to be on the Amazon storefront are things that are going to help you prepare for the surgery and then heal. You know, make you comfortable while you're healing after. Things like, you know, belly bands, the correct pillows, you know stuff, stuff like that yeah, To make things easier on you to so that you can you can heal with ease.

Speaker 1:
40:22

Yeah, you're so right about that. My husband cracked up at me because anybody who says something about surgery and it's like for any something in the pelvic area, I'm like, oh, do you got a pillow? Do you have the long pillows that wrap around you? Like? They look at me like I'm crazy, but I'm like these are the things I wish. Somebody told me that I didn't know and they're like how did you know? I was like because I know, because I didn't have it and I had to figure it out.

Speaker 2:
40:49

And now you know you don't have to go through it Exactly, and a lot of people have really good packing lists, but I want it to be so that you know exactly what to get Like just here, just check these things off, go buy them on Amazon and then you're good, you don't have to think about it, you don't have to think about finding it, it's just there for you.

Speaker 1:
41:11

Yeah, so many things, and I think it's again. This is going back to what we were talking about earlier. For those of us who share our stories, we know the importance of sharing some of the things that we wish we knew and giving like making it easy, because it's already hard enough going through this battle and yes, it is a battle of living with endometriosis or any other chronic illness, specifically to not know, like, what you should have because doctors don't tell you. I had recently. I had a family member who was had surgery and the doctor told her that it was a six week recovery time and I told them that's a lie and I don't mean that in like the. I'm like that's the book answer, that's what a book would tell you.

Speaker 1:
42:00

But if they actually pulled their patients who have been through this surgery, the surgery happened to be a hysterectomy, a full hysterectomy. They would tell you this is not a six week recovery. Like you don't really feel completely yourself until and yourself is like a new yourself for like a year and yeah, and you don't levels to it. There's so many levels to it and you don't. You go thinking, oh, it's just going to be six weeks, I'm good, and you're like disappointed and upset and having setbacks, but they're not setbacks like this is going to happen.

Speaker 2:
42:34

This is the actual process. Yes, yeah, there's, there's. There's the first two week, there's the first. There's like there's different milestones, and that's the way the doctors should tell you that there are different milestones of recovery. There's the two weeks, there's the six weeks, there's the six months and then there's the year and you hit different milestones of your recovery in those processes and you don't get your energy back until a year later.

Speaker 1:
43:01

Yeah, yeah, so many things, so can't wait to get here about that and check out your Amazon store and things like that. I will link it in my. I have a private podcast feed for endo warriors specifically and it is all things life with endometriosis slash, business, living with endometriosis and its tools, and conversations and stories about what you need or what you need to know so that you don't feel alone going through this. Literally, it's pretty much my manifesto of what you should do with endometriosis and being and treating it. So this will probably be added to it, along with those resources that you shared. So thank you so much for coming and sharing your story.

Speaker 2:
43:48

My DM is always open. If anyone ever has any questions, like before the storefront is live or anything. You're getting ready to have surgery and you need someone to help prep you. By all means, my DMs are always open. Please, please, please, do not hesitate to just shoot me a question whatever, awesome, awesome, well, thank you again.

Speaker 1:
44:08

Thank you. That's a wrap. Y'all Thanks for tuning in to Crafted to Thrive, the podcast that helps entrepreneurs with chronic illness to thrive and build a holistic business and life. Check out our website at craftedtothrivecom for this episode's show notes and all the gifts and goodies. Connect with me on Instagram at Thrive with Nikita for more tips and behind the scenes and more. Tag me to share what you loved about this episode and I'll feature you on an upcoming episode. So until next time, remember, yes, you are crafted to thrive.