E9 S1| Chronic Illness Coach and Advocate Alyssa Truelove Shares Her Story of Living with Endometriosis and Fibromyalgia

In this episode of the Sick and Seeking Podcast, I chat with coach and advocate Alyssa Truelove about her experience living with two chronic conditions: endometriosis and fibromyalgia.

Alyssa offers insight into her diagnosis story, sharing the shocking news she received at just 19 years old of her endometriosis. We discuss the significance of recognizing that your feelings and experiences are valid, even when your illness is invisible and not easily seen by others.

Join us as we delve into the realities of living with chronic illness and the importance of community support in the healing process.

Conversation Highlights:

• Diagnosis Journey: Alyssa reflects on her endometriosis diagnosis and the impact it had on her life.
• Validity of Experience: We explore the importance of acknowledging your body's sensations, even when they’re invisible to others.
• Living with Chronic Illness: Alyssa shares her strategies and mindset for managing daily challenges associated with both conditions.
• Advocacy Work: Insight into Alyssa’s role as a founder and advocate for the Chronically Ill Society, offering support to others facing similar struggles.

Connect with Alyssa:

Email | Instagram | TikTok | Facebook | Website

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Transcript

leslie_field (00:00.078)
need to. You tell me. All right, so here we go. Welcome, Alyssa. It's so great to have you with us today.

alyssa_truelove (00:09.519)
I am so pumped to be here. Thank you for having me.

leslie_field (00:12.89)
Woohoo! So Alyssa and I met through social media, Instagram. It's amazing because I didn't think you could make friendships and connections through social media these days. So fun fact, you can. I started connecting with people in the chronic illness community and boy is that community strong and awesome and I'm still just diving in the beginning. So it's so great to meet you Alyssa. And so I think where we start is tell me about your body. Tell me your body story.

alyssa_truelove (00:40.891)
Yes, yes, and you made such a good point. Social media, as much as there is so much going on there, there are so many amazing people.

to connect with and I'm so happy that it connected me to you. Yay! So my body, so you might be wondering how I ended up here. So I'm going to start kind of from the beginning and with my diagnosis and how I got into the chronically ill world. So about, gosh, over a decade ago now, I believe I was 18 or 19, I was at my boyfriend at the time and I were hosting a dinner party.

leslie_field (00:53.469)
Yes! Yes.

alyssa_truelove (01:19.941)
Easter it's the first thing we're hosting so I'm being Martha Stewart. I'm doing all the things I'm making everything as perfect as I can. As I'm doing this though, I'm getting these pains So my lower abdomen like I'm getting so much pain to the point I can remember we had a corner where our sink was and I grasp on to the counter because I was in so much pain and knelt to the ground and When I did that I was trying to hide it So I was trying to hide everything because I didn't want anybody to know

And at this point I was like, oh, it's just, I'm having some pain, it's normal, I'm sure it'll pass. And of course being concerned as people are, they were like, go to the hospital. And I was like, no, like I am fine, I am fine, this is what happens, you know, the woman's body. And then after I was like...

Okay, I listened. His grandmother actually looked and was like, she's not going to go when everybody's here because she's doing this dinner. But once we leave, you make sure you make her go. So I went. So I went to the emergency room and they took me in. They ran some tests and they sent me home actually. So I'm still in the same amount of pain. They sent me home.

then they told me to come back for an ultrasound the next day. So at this point, you know, I'm at home, I'm in pain, but they had sent me home. So I'm like, there must not be that bad. There's not something that bad with me, right? If you're gonna send me home, yeah. So the next day I get up early and I say, you know what, I'm gonna go myself, like you do like kind of whatever, and I'll call you when I'm done to pick me up.

leslie_field (02:44.596)
Mmm.

Right?

alyssa_truelove (02:58.279)
So they did some ultrasounds, they had me waiting, and then a doctor comes in and is like, okay, so we're gonna do surgery, you have a torted ovary. And I was literally caught off guard in the most scared way, I was like, why, excuse, hold on, back it up, how, you know. Yeah.

leslie_field (03:16.714)
Yeah. Okay, and can you actually tell us what, although it's funny enough, I have Abby's episode who's coming up before yours who talks about a tortid ovary, but if you don't know what a tortid ovary is, even though I know this is not exactly where the story's going, tell us what a tortid ovary is.

alyssa_truelove (03:37.171)
Yes, so as the doctor explained it to me, and I always say I'm not a medical professional, so my words aren't very medical, but it was as if it was twisted. So my fallopian tube was twisted with the ovary, so their concern is that the ovary would die. Like essentially, it would cut off circulation and the ovary would die. So especially at my age, it was a very crucial thing that they needed to fix. So and at this point, I didn't know anything was wrong. I was just living my life doing my thing.

leslie_field (03:41.9)
Yes.

leslie_field (03:46.114)
Mm-hmm.

Mm-hmm.

leslie_field (04:00.844)
Mm-hmm.

alyssa_truelove (04:07.445)
and I would get in pain, but I just always thought it was normal, you know, that was my normal at that time. So now I'm just like, what is going on? So I'm trying to listen to the doctors, but I'm also texting, being like, hey, I'm gonna be transferred by ambulance to another hospital to have emergency surgery for this toedid ovary. So I go to the hospital, at this point,

leslie_field (04:09.431)
Mm-hmm.

Yeah.

leslie_field (04:30.072)
Mm-hmm.

alyssa_truelove (04:34.143)
I call my family, like my mom. She was so upset that I didn't call her the night before, but that's for another time. And always call your mom if you can. So they do this surgery. After the surgery, the doctor comes to kind of share what happened during the surgery. So it ended up that I had stage four endometriosis.

leslie_field (04:38.966)
Yeah, yeah, yes.

alyssa_truelove (04:56.163)
and when they told me this, I was kind of a blank stare. I was like, okay, what is that? I had never heard of this, and at that time, nobody was really sharing their stories, and it wasn't something, I didn't know the word, I didn't know what it was. So I was super confused, and basically they said, you have this, you're gonna have it for the rest of your life, you're gonna be in pain, and then.

leslie_field (05:02.762)
Mm-hmm.

leslie_field (05:12.856)
Mm-hmm.

leslie_field (05:19.532)
and yeah.

alyssa_truelove (05:22.355)
a resident came in. There was, at this point, because of my torsion ovary and everything going on, they were using me as a case study. So I was like, okay, bring it on. If I can be used, if my body can help others, that's fine. So they came in and the one said, okay, so basically telling me about it some more and then saying, so your fertility, you're not gonna have any fertility and blah, blah, blah. And I was like.

leslie_field (05:29.974)
Well, yeah. Wow.

leslie_field (05:36.756)
Yeah.

alyssa_truelove (05:51.199)
excuse me what? So first of all, how are these connected? Second of all, I was so shocked because fertility concerns were nothing I had ever even thought about, you know? That's not something at that age you're thinking about. And then as I learned what endometriosis was, I started to realize, wow, this kinda makes sense. And different...

leslie_field (05:54.431)
Mm-hmm.

leslie_field (05:59.051)
Yeah.

leslie_field (06:03.875)
Right.

leslie_field (06:16.132)
Mmm.

alyssa_truelove (06:18.067)
were the pain I would realize. One in particular was I was in high school and I was doing the beep test. And if you're unfamiliar with what the beep test is, you're essentially running from one line to the other, but you have to do it faster and faster, and it's one of the grading systems they have in PE, like gym class. I was never a very active kid, but at one point I was in so much pain for my period that.

leslie_field (06:30.338)
Mm-hmm.

alyssa_truelove (06:43.783)
I went up to my gym teacher and said, I'm so sorry, like I can't do this. I have my period. It's really painful. And I think they just thought I didn't want to do it or I was being dramatic or over-exaggerating. And then I realized, no, like there's something's going on in my body, you know? Yeah. Yes. Yeah.

leslie_field (06:51.631)
Mm-hmm. Yeah.

leslie_field (06:59.486)
Yeah, wow. Yeah, you had this for a long time, really. And when we were talking, when I was discussing and we were chatting about your story, you were even mentioning that you probably had so much pain, and I think doctors said this to you later, right? That you probably had so much pain in your body, and this comes up again and again that we only know what's normal in our body. So that's your new baseline.

alyssa_truelove (07:16.192)
Mm-hmm.

leslie_field (07:25.91)
So that just becomes normalized. Like you're, and then obviously you probably adapt, you know, we do, our bodies adapt. And so you just adapt it to the pain, which is like so sad, but like wild at the same time.

alyssa_truelove (07:38.256)
It is insane and it really shows and I think as we're talking today as well like

Invisible illnesses, they are not, and I'm gonna say this loud, and I want everyone to hear that, one, your feelings are valid. What you're feeling in your body is valid. And your invisible illnesses are not imaginary. It's not all in your head. And you are feeling those things. And it's one of those things that I've experienced with having endometriosis. And then also, which we'll talk about a little bit later, my second diagnosis,

was that nobody can see on the outside.

Right? Nobody can see and you almost, for myself anyways, I went through this phase where I was almost ashamed or embarrassed and it was really shameful for me. And I don't know why, I don't know where it came from, but I just felt like I always wanted to hide it. Like I never wanted anyone to know I had endometriosis. I didn't want it to be something that...

leslie_field (08:43.538)
Yeah.

alyssa_truelove (08:46.443)
I was kind of known for or people thought I was sick or something wrong with me and I would kind of fight through things or I would always say I was fine and you get so good at you know what working in and living in that amount of pain every day and you're kind of doing yourself a disservice, right? Because

leslie_field (08:58.879)
Mm-hmm.

alyssa_truelove (09:10.983)
You did nothing wrong to make your chronic illness appear. You know, it's not, it took me a long time and lots of therapy, but to realize that what's happening in my body is not my fault. It's nobody's fault, it's just, unfortunately the cards are dealt, you know? And I know it's not like.

leslie_field (09:20.148)
Yeah.

leslie_field (09:30.882)
Hmm.

alyssa_truelove (09:32.959)
go fish where you can trade them and you know get new cards. But yeah that was kind of about my first diagnosis when I got into having and being aware that I was living with a chronic illness.

leslie_field (09:45.502)
Yeah, and so take me back if I had this right, were you like in your late teens you said when this all happened again that whole story?

alyssa_truelove (09:50.783)
Yes, yes, so I was and I always for no I must have been I would have been 19 I believe I was 19 around the 1920. I I was under Yeah, I'm pretty sure I was under my 20s

leslie_field (09:57.942)
Mm-hmm. Yeah.

leslie_field (10:02.75)
Yeah. Is this also why we met? Because of course your diagnosis story happened right around the time that my diagnosis story happened. I was, I know, I'm like, I tell you, and I've said it in many other podcast episodes, like I attract people where there's a lot of similarities and parallels, and I get it, we both have chronic illnesses. We have very different things happening in our bodies, but obviously the same things sort of come up. But I need to be, I guess why I wanted to pause there at the age thing is because

alyssa_truelove (10:11.399)
Right? We're connected!

leslie_field (10:32.898)
We're so young, very, very young for these things, myself and your story, like to have this news said to us, you know, and especially what you're talking about. And thank you for everything you just said, because I needed to hear that again. I was like, can you like just, I'm gonna have this recording and listen to it all the time now, where I'm like, Alyssa said it's okay, and I'm okay, and it's not my fault. So thank you for that. But also that to hear that when you're 18, now, as we get older,

alyssa_truelove (10:38.558)
Mm-hmm.

leslie_field (11:01.286)
and especially me and you, we've met a lot more people who have things going on in their bodies. And another episode guest I had on Rema even pointed out that most people will probably have something in their body that kind of goes off at some point. Like it's like, not working as we had hoped, but you just kind of fine tune and hope that it gets better. But why am I talking about being 18 or 19? Is that when we're that young, I feel like there's very few people. So like we're just living hopefully our best lives. Like we're just hopefully having

great experiences at school and we have good friends and we're enjoying what we can. It's that age where you're trying to just enjoy yourself and maybe get ready to go to college or whatever you're dreaming of in the future. I just wanted to presence this for a moment to be like, that was really, it's a really tough time to be diagnosed when you're 18 or 19. So I just, I had to stop and just point that out because it's a big deal.

alyssa_truelove (11:57.151)
It is, I think it's a big deal because especially at that age, like you said, you brought up so many good points, but you're at that turning point and you are deciding and making decisions and...

doing things of what your future is gonna hold, right? What you wanna do with it if you want to travel or go to school or have a career, have a family, you know? You're looking at kind of who you're becoming. You're not fully yourself at that point, you know? You're growing into who you are and now you're faced with this. So I know for myself, it meant...

leslie_field (12:26.176)
Mm-hmm.

alyssa_truelove (12:33.323)
at that point, because I have a very different outlook now, but at that point I was really looking at things and saying...

For example, travel. I had a lot of friends that were traveling at that age and doing things, where myself, I was trying to get into specialists and doctor's appointments, and I didn't want to travel if that meant missing an appointment, because if I got something that would help me, that could change so much for me, right? And even the path or career path, if you're in that much pain and you're going to school or you're trying to do a profession

leslie_field (13:01.079)
Yeah.

alyssa_truelove (13:11.577)
that's not gonna work with my life now, right? And even having those, I think, those conversations, right? Around your chronic illness with people, it's, especially when you're young, it's such a weird thing to talk about. And like I said, I spent a lot of time not acknowledging it and basically I spent half of my time and energy pretending I didn't have a chronic illness and living my life as a completely healthy person

leslie_field (13:14.061)
Yeah.

alyssa_truelove (13:41.137)
the other part I was struggling to survive. You know, so it's, at that age it's so heavy and I was grateful and I'm so grateful to this day that from early on I've had such a great support system which I know not everyone is as fortunate to have but that's why also like you said, the social media and finding and connecting with people.

leslie_field (13:45.519)
Mm-hmm.

leslie_field (13:49.975)
Really?

alyssa_truelove (14:07.943)
is so huge and having that community is amazing and I just I never personally at that point like you said I had a support system for me with not having you go to doctor's appointments alone and you know being there to help me or doing things but I didn't know one person that was going through what I was going through so it was super lonely.

leslie_field (14:30.678)
Mm-hmm. Yeah, no, absolutely. I couldn't agree with you more. Actually, I kind of laugh at myself when I'm like, I didn't, I guess because I was a Facebooker, I'm like, that's like the old people thing. I'm like on that cusp of being old-ish. I don't know, that's not the point. Anyway, but Instagram's the place where I've been able to connect with a lot of women, particularly, who it's been really.

alyssa_truelove (14:46.587)
Ha!

leslie_field (15:00.286)
Amazing. I mean, I'm talking about the last few weeks. So we're in 2023. It's been like, I don't know, is this my 21st year of being diagnosed with chronic kidney disease? It took me this long to find these communities. And there's definitely a connection. It's like, oh my gosh, we finally found our people. I'm sad that we're all these people, but then again, we found each other and we get each other.

alyssa_truelove (15:15.127)
Yes.

alyssa_truelove (15:20.629)
Yes.

alyssa_truelove (15:24.127)
Yeah, it's just, it's such a different experience when you can talk to somebody and it's almost like you're speaking a foreign language that only people in, that you know, have a chronic illness understand, right? Like what I'm saying, I feel like my insides are barbed wire and I'm feeling like I'm being stabbed in the vagina and flaring like a crazy person.

leslie_field (15:39.086)
Totally, totally, yes.

alyssa_truelove (15:51.195)
and somebody will be like, I got you girl, like I understand, I know that feeling. Yeah.

leslie_field (15:56.17)
feeling, right? I mean, totally. It's, it's the it's, it's kind of as, you know, whatever, sad, unfortunate, frustrating, angry, all the things of why we don't want these things. I personally see those silver lining moments to be like, I'm not alone in this, but at least I can be in connection with someone to say, like, I get you, I got you. And it just helps us get through the day because you know, it's a roller coaster. One day, our body's like, Hey, I'm doing pretty good today. And next is like, No, I'm not.

alyssa_truelove (16:06.627)
Yes.

alyssa_truelove (16:12.026)
Mm-hmm.

leslie_field (16:25.45)
No, I'm not doing it, okay. Not doing it, okay. Right? Okay, so I don't know where we were on the diagnosis story, but I don't know, was there more? Is there more on that part? Yes. Tell us, continue. I mean, are we surprised? No, I'm not that surprised, but please continue.

alyssa_truelove (16:26.22)
100%. Oh my gosh, 100%.

alyssa_truelove (16:34.323)
Yes, yes, there was more. The story continues. No, no, right? So then at this point, being like I said, let's we're just going to land on 19. I'm pretty sure I was 19. So 19 years old.

I'm trying to get into specialist and figure out what is going on with my body. And I'm hopeful at this point, right? I'm like, you know what? The doctors, they're going to help me. They're going to do what needs to be done. Let's do this. So over the next, gosh, up until a couple years ago. So probably...

almost a decade. I went to multiple specialists. I went on every different hormone therapy you could probably think of. I did Lupron, which was injections to put you into menopause. I had two laparoscopic surgeries and a Cysto, something to do with the bladder, to try to do something to help. And I kept going through this and then it got to the point where they, we talked about a hysterectomy.

So we talked about something that could really help and alleviate what was going on because I got to the point where I was in doctor's office and I said, I can't live like this. I am in so much pain every day. It's draining everything out of me. I was becoming a shell of who I was and it was just really sad. And I was at this point too where I just, I wasn't quite...

leslie_field (17:54.496)
Mm-hmm.

leslie_field (18:04.919)
Totally.

alyssa_truelove (18:12.171)
looking at other sources, right? So I would go to doctor's appointments, I would take what they would say to me, and I would go with that, right? That was kind of all I was doing. You're a doctor, you know best, you have my what, my wellbeing in mind, you know? And not always, not always do they, right? Unfortunately, and I know with Western medicine, one thing that I ran into a lot with endometriosis.

leslie_field (18:20.201)
Mm-hmm.

leslie_field (18:26.175)
Yeah.

leslie_field (18:32.034)
I'm out. I'm out.

leslie_field (18:41.186)
Mm-hmm.

alyssa_truelove (18:41.519)
was it's all about the uterus. Preserving the uterus, preserving you for childbirth and fertility, right? That was always their focus, was around getting you to the point where you could have children, and then apparently it just goes away when you have children. One, that is not true. It does not.

leslie_field (18:49.245)
Wow. Oh, okay. Yeah? Mm-hmm.

leslie_field (19:02.834)
I was like, that doesn't, no, okay, continue, yeah.

alyssa_truelove (19:05.887)
Yeah, no, it doesn't. There's different things, like your body goes through, and I haven't personally, like I haven't had children, but I just said, okay, what are we gonna do? How are, you know, and I was kind of left with the decision either I would have laparoscopic surgeries every couple years, or a hysterectomy would help kind of alleviate that where I would, it would make a massive difference in my quality of life. And that's really what I was looking for, quality of life.

leslie_field (19:29.582)
Mm-hmm.

leslie_field (19:34.166)
Totally. So can you tell me a little bit more about those laparoscopic surgeries? Like the actual procedure itself, like I've heard this term before and connection to endometriosis is what I, yeah, can you tell me a little bit more about this?

alyssa_truelove (19:38.624)
Yes, yes.

alyssa_truelove (19:48.379)
I can for sure and please everybody listen and keep in mind I am not a medical professional. I always say this so if I say things wrong don't come at me. So in my knowledge laparoscopic surgery it's like a laser. So it's going in and it's lasering any of the endometriosis that they're finding in your body. So to remove that. Where now that I'm more educated and I have done research.

leslie_field (19:51.466)
I know. No.

alyssa_truelove (20:15.471)
and I have really become an advocate for myself and I know we're gonna talk about that a little bit later, but there's another surgery you can do and it's called excision. An excision surgery actually goes and removes the endometriosis almost from the root. So how I kind of think about it in my head, and I don't know if this is the best analogy, but if you're doing laparoscopy, I almost think about it as if you are shaving.

leslie_field (20:20.526)
Mm-hmm.

alyssa_truelove (20:42.571)
Right? So you're shaving hair, let's say on the body, and you still have a little bit of stubble after you shave. Right? Where when you wax and you pull that hair from the root, you're actually taking the whole root of it out. Right? So it's not going to grow back as fast and there's not really as much of it to grow back. Right? So, yeah.

leslie_field (20:45.922)
Mm-hmm.

leslie_field (20:56.83)
Yeah.

leslie_field (21:05.122)
Got it. Okay. 101 question. I'm going back to 101 here because I actually don't know a lot about endometriosis myself. So I'm like, I suspect a listener too might have the same question. So endometriosis, is it only present inside the uterus or does it kind of go into the fallopian tubes and up into the ovaries? Tell me more about. So, I'm going to go back to 101 here.

alyssa_truelove (21:12.101)
Yeah.

alyssa_truelove (21:24.047)
So, endometriosis can actually be found on your whole body.

leslie_field (21:28.054)
Wait, wait, what? I know, because I was like, she's kind of alluding that it could go elsewhere.

alyssa_truelove (21:31.053)
Yeah.

Yeah, so it can really grow and like I said, this is from my knowledge that I have, but it can grow and that's what happened to me is it was growing on my bladder, it was growing on other areas so it can spread. So it's not, and that's what is such a misconception is that one is that it only affects that area, right?

leslie_field (21:49.027)
Oh.

leslie_field (22:01.4)
Yeah.

alyssa_truelove (22:01.827)
that area where no, it can affect a lot of other organs in your body. So it can be a, it's a full body disease. Um, yes. So, right.

leslie_field (22:09.29)
Whoa, I'm having like a moment. You're like hearing the wheels turning in my head in real time. Thank you for that because I said, there's something she said about that that I wasn't quite catching on to. So thank you for clarifying that. And again, this is, you know, we do the best we can with the knowledge that we have. We're not gonna get 100%. But essentially we're helping guide, not guide people, but give people a better understanding of like what it is. So you're talking about like, is it, again.

alyssa_truelove (22:27.692)
Yes.

leslie_field (22:36.634)
101 basic question here. Is it something that sort of just like builds up? Like what is it? Is it like a substance? Is it like, I don't know, a plaque? Like what is it?

alyssa_truelove (22:44.643)
Yeah, so it's like endo, like it's the tissue that's growing, but it grows kind of outside and then it grows there. So they say one in 10 people, I would say people with uteruses would experience endometriosis. So it's the same figure as diabetes. And it's so insane to me that we,

leslie_field (22:51.07)
Okay. Okay.

leslie_field (23:04.63)
Wow, yeah, high figure.

alyssa_truelove (23:12.543)
We're still getting to the point, which I'm so proud of, the ENDO community, and there's so many amazing advocates out there that are getting that knowledge out to share. One thing I always say to everybody is check your sources. When you are researching, there's so much stuff on the internet that...

when you're reading something, make sure to really check the source and to know that it is something valid because there's a lot of stuff out there that is invalid information and that's a lot of the stuff that I was even told and some doctors even are not fully versed in what it is still because in let's say they go to medical school like maybe one chapter, you know out of their five years is based on that, right? So

leslie_field (23:48.831)
Mmm.

alyssa_truelove (24:01.469)
and learning every day about it even more.

leslie_field (24:03.322)
Mm-hmm. Yeah, absolutely. No, thank you. So I get it. It's part of the tissue. I don't know if you call it. And I'm going to get this wrong and I want to look it up. Is it like it's something that do with the tissue growing in a certain way?

alyssa_truelove (24:16.011)
It is, and I'm trying to think of the word.

leslie_field (24:18.206)
No, I know. It's because I didn't ask this to Alyssa. So now she's like trying to do it off the top of her head. I'm like, can you please get us a scientific explanation with all the technical words of what endometriosis is? Go. So I apologize, Alyssa. I threw you into this head first right now.

alyssa_truelove (24:22.945)
Right?

alyssa_truelove (24:32.743)
No, that's okay. I just, I'm thinking of the word. I can't think of what the word is, but.

leslie_field (24:36.522)
That's okay. That's okay. We'll keep the listeners, you know, go Google it right now. Go do some research. Check your facts. Where did you get the information? So that's fine. But it just, I had no idea. I had no idea. So thank you for sharing that with me. Okay. I stopped you in the middle of your diagnosis story. Please. We're worried.

alyssa_truelove (24:42.926)
Yes.

alyssa_truelove (24:55.519)
No, I love this, I love this. Okay, so then, oh, okay, so we'll go, so now fast forward, I am 26.

and I'm at the point where I'm like, something needs to change. My body and my quality of life needs to improve. I can't keep living like this. So I'm at the doctor and this is where it's kind of, you either keep doing laparoscopic surgeries or you have a hysterectomy. And at this time, I thought that those were, one, the only options, and two, good options to take because they are coming from a medical professional, right? And a specialist in this area.

did not want to do the hysterectomy because they kept talking about me having children. So they kept saying, well you might change your mind, you might this, you know. And I said, I need to be healthy in my body, right? This has nothing to do with.

leslie_field (25:43.445)
Mm-hmm.

leslie_field (25:55.266)
Mm-hmm.

alyssa_truelove (25:59.171)
the chance of me having a child or my fertility. This is about my quality of life first because even if I did go down that route, if I am in pain every day and if I can't function as a human, how am I supposed to take care of another human, let alone myself, right? So it was one of those things where I, and once again, shout out to therapy, I had done a lot of therapy.

leslie_field (26:19.195)
Yeah. Yeah.

alyssa_truelove (26:29.425)
and gone in and really wanted to showcase I am the patient, not my uterus of Neverland down there. And, side note, they had told me if I did get pregnant by a miracle, then one, it could be very dangerous. Right? So I'm pushing at this point to have the hysterectomy.

leslie_field (26:40.321)
Yeah.

alyssa_truelove (26:57.999)
and I go to the doctor's appointment that is kind of that decision making. You know how some of those doctors appointments are like, okay, we're going to make a decision whether we move forward or not. The doctor actually said to me, so this is the one appointment I go to by myself. I haven't. Right. And normally I don't. Normally I always take somebody either have my mom, my nanny, or like my husband at the time would come with me. So the doctor actually said to me,

leslie_field (27:07.063)
Mm-hmm.

leslie_field (27:14.27)
Oh.

alyssa_truelove (27:26.867)
do you, first of all, does your husband, like have you talked to your husband? Is this a mutual decision? And I said...

it like I have talked to my husband one it does not matter what he thinks to be quite honest yes we like we had and my husband is the best like I couldn't ask for a more wonderful husband and he was in support of our decision but it's my body at the end of the day it is my body so it should not matter whether I am single married you know whatever and then

leslie_field (27:52.066)
Yeah.

leslie_field (27:56.462)
Mm-hmm.

alyssa_truelove (28:02.771)
Oh my gosh, the one and I will never get this out of my head. He said to me, what if your husband got hit by a bus tomorrow and died and you met Jim and Jim wants to have a baby with you? I literally, my face, I wish somebody caught me on camera. You know, that moment where I was just like, okay, well, if this is like your test to ask me.

leslie_field (28:06.542)
Mm-hmm.

leslie_field (28:23.499)
Yeah.

alyssa_truelove (28:32.799)
I wouldn't be with Jim, you know, if Jim just wants me to child bear for him, you know. That's not really the direction of my life. So end of the game, I did have the historectomy and mildly it helped and I was like, I'm so excited I'm going to be cured, you know. It did not, you know. So it did not. But the one thing I will say is throughout.

leslie_field (28:35.222)
Right. Mm-hmm.

leslie_field (28:45.899)
Yeah.

leslie_field (28:54.37)
Hmm

alyssa_truelove (29:00.787)
this entire time leading up to this point since my first emergency surgery, not at one time did a medical professional, a doctor, anyone recommend mental health support.

leslie_field (29:15.778)
Hmm. Just mind boggling. Actually, and I want you to talk more about this in a second, but as soon as you've said that that doctor, and I don't know if he was a surgeon or the doctor or whoever, I always sit there and I think to myself, is he or she, look at me being so like sexist, he. What we know, I still think most doctors are men. Sidebar, anyway, is that person really the best placed person to be asking you that?

alyssa_truelove (29:18.371)
Which, yeah.

leslie_field (29:45.166)
question, you know, like for them to be, you know, what about gym and gym, da da da da da da da. Because I just, so I have to like plot, I just want to go back there because talking about mental health, I get it. The doctor is, has a job and maybe they're just trying to cover their bases and, but I'm like, I just don't feel like that's the right person to be asking that question in that context. Um, I had a very similar situation happen when I was doing IVF and I was questioned by

alyssa_truelove (29:51.177)
Like...

leslie_field (30:13.27)
the doctor about my decision and choices. And it threw me into an absolute tizzy after I was so upset for so many reasons. So I get that moment. So it is mind boggling to me that they didn't recommend mental health services. And it just, I guess shows maybe just a lack of the focus in our conventional medicine. Although I suspect with the pandemic, lots of things have changed because we have all been through it. You know, everyone's been through it. But anyway, like, so.

alyssa_truelove (30:39.546)
Yes.

leslie_field (30:42.058)
That is such an important point that you bring up. I don't know how to fix it, but it's something that I'm so glad you highlighted.

alyssa_truelove (30:49.483)
Yes, and I think too that, yeah, it was just mind boggling that that was never recommended at all. And I think it's something with going through a chronic illness, yes, your body, like physically, is going through it and internally, but I think what I was lacking in a lot of that as well, and like I said, I did go out more recently than before and seek out my own mental health support, but.

it is mentally challenging for you because one, it does affect your brain. Like anything that you have is going to affect your brain, but you're almost going through.

like a rebirth. When you are diagnosed with a chronic illness and when you were told there is no cure and this is now your new normal, you go through a grieving process of that person you used to be. Thinking back to when you were a healthy person that had no care, that didn't have to you know prepare, make sure you have your medicine when you go out the door, you know, all of these little things that now living with a chronic illness become your normal and you go

that where if there was steps to properly you know go through and realize like again that feeling that grief feeling that sadness when you were diagnosed that is okay those feelings are valid and going through different stages anger right like why is my body doing this why can't I make it better you know it's

leslie_field (32:19.645)
Mm-hmm.

leslie_field (32:24.836)
Ugh.

alyssa_truelove (32:26.687)
It's trippy, like your brain goes through a lot in those moments and you feel so many things.

leslie_field (32:33.006)
So many things, I think you alluded to this earlier, like, and I don't know all the stages of grieving myself by heart, but I believe one part is denial. You know, you mentioned this earlier that when you're diagnosed to, there's, and I'm not saying, how do I say this? Huh, there's a part of you that totally wants to deny it. It's just like, I don't wanna deal with this because of the heaviness, because of those

alyssa_truelove (32:42.625)
Yes.

leslie_field (33:01.646)
multitude of emotions that you can go through. You know, even just going to a doctor's appointment, how it can really set you off, you know, like just the news they have or the recommendations they make or just how they treated you that day, you know, like it's a very heavy burden to carry around with us and it doesn't get easier but we do it and like you said,

alyssa_truelove (33:10.641)
Mm-hmm.

alyssa_truelove (33:16.844)
Yes.

leslie_field (33:29.942)
the mental health professionals out there that if you can get the support, it makes all the difference. I personally have shared many times that I go to therapy and I like name check my therapist on this podcast all the time. But I should say, I've never said this, that for many years of my life, I was very anti-therapy. I was like, I don't want to talk to a stranger. It's really weird. They know everything about me. I don't know anything about them, which is fun because when I do get like tidbits, I'm like, I know now 10 things about Janine. And I get really excited.

to like piece them all together and make a story about her life. But you know, all those things you have to find the right person. So I just love that we again are encouraging people and saying like, if you're open to it and you can make it work, give it a try.

alyssa_truelove (34:01.677)
Right?

alyssa_truelove (34:06.071)
Yes.

alyssa_truelove (34:15.895)
Yes, and something you brought up a good point. I know we're kind of going all over, but I love it. I want to talk about doctor's appointments because I went through it when I went to doctor's appointments. So I used to go to doctor's appointments and be so anxious and nervous leading into it where I would just, I would put myself in more pain because I would just be feeling so anxious to go in. I was nervous. I always felt like

leslie_field (34:19.518)
Oh, I love it. This is what we're here for.

alyssa_truelove (34:45.759)
As soon as they started talking, I would go blank. Sometimes I started crying and I was so intimidated and scared about what was going to happen. So leading into, I'll kind of go into my part two of my diagnosis, part two. So I, over the next, I guess five years or so,

leslie_field (34:48.716)
Mm-hmm.

leslie_field (34:55.168)
Yeah.

leslie_field (35:01.026)
Part two. Yeah.

alyssa_truelove (35:11.143)
And recently, I started getting more pain, but different pain. So it wasn't the pain that I normally got with my endo, but at this point, I just put everything to endometriosis. You know, my toe was bugging me. Oh, it's just my endo. You know, I just blame my endo for everything. Um, and, but it kept getting worse to the point where I couldn't function, and it was really taking over, and this was more pain, and it was a f-

leslie_field (35:16.419)
Mmm.

leslie_field (35:23.982)
Right? Yeah. Yeah.

alyssa_truelove (35:41.157)
even like I was getting which I know now people call it brain fog but I would be working and I would be forgetting things or I was out of the zone which is totally not me and I couldn't figure it out you know I couldn't figure out what was going on so I went back to the doctor

leslie_field (35:54.423)
Mm-hmm.

alyssa_truelove (36:01.327)
and this is a different doctor at this time, and I just kind of went in and I was like, okay, I need to figure out what's going on with my body. So this is me over 10 years later for my first kind of time where I knew, you start to learn your body and you know when something isn't right. So what I was starting to do is I was like, okay, I need to be an advocate for myself. This time around is not going to be the same.

leslie_field (36:10.487)
Yeah.

leslie_field (36:19.362)
Yep. Yep.

alyssa_truelove (36:30.483)
So what I started doing is I started tracking. So number one, if you don't use a daily tracker, you should totally use one. I have one and I'm obsessed with it. I use it every day and I track everything in my day. Kind of from what I eat to if I'm taking medications to what I did that day. Everything that can kind of help play the picture of that day so I can see different things happening.

leslie_field (36:57.774)
Mm-hmm.

alyssa_truelove (36:58.423)
And then before my doctor's appointment, I write out almost like a script. So I write out a script. I have kind of my little tracker, so all of that information. Because it's almost like you're...

leslie_field (37:03.245)
Mm-hmm.

alyssa_truelove (37:11.575)
not going to court, but like you're going, you're solving a mystery, right? So it's like the more clues and the more evidence you can give the doctor, the more it can support them too, right? Because I know, and I've been to doctor's appointments where I've been like.

leslie_field (37:14.978)
Mmm.

leslie_field (37:18.986)
Yes, totally.

alyssa_truelove (37:28.971)
I feel like I'm getting stabby pains and that's, I'm not describing things well. I might not be giving them enough information that they need, right? So, and I do this, and this is something I've continued to do, and I write it out, and sometimes if I get, depending on the doctor, right? Some doctors make you feel more comfortable, but I'll read it, and there was this one doctor where it just wasn't.

leslie_field (37:38.454)
Yeah.

alyssa_truelove (37:53.303)
We didn't mesh, let's say. The bedside manner wasn't really there and I would get really uncomfortable. And the one time I gave my script to the doctor because I physically was emotional and I was crying and I just couldn't read it, but that information really helped, right?

leslie_field (37:55.71)
Yeah.

leslie_field (38:07.447)
Yeah.

Mm-hmm.

alyssa_truelove (38:11.199)
So those are two things that I always say is bring with you to your doctor's appointment. Is have a script of all the things you wanna say so that you don't forget anything or you don't get steamrolled or you don't get kind of pushed over. Have everything there and then have those trackers to really see kind of what's going on because there may be things that are connected, right? And maybe really random things that you don't think about that are connected, right?

leslie_field (38:22.218)
Yeah?

leslie_field (38:33.817)
Mm-hmm.

alyssa_truelove (38:38.891)
My second thing is if you can and you have the ability bring somebody to your doctor's appointment with you The reason I say this is because when you're taking on that information It can be a lot to handle and sometimes we don't Metabolize it right we don't really take in the information So that person that comes with you they can take notes They can really kind of see it from an outside perspective and allow you just to kind of be there and have that information

leslie_field (38:44.171)
Yes.

leslie_field (38:51.316)
Mm-hmm.

alyssa_truelove (39:08.179)
there. I think those things are super important to do to really help you get everything you need out of those appointments and be your advocate and have another person there. So if a doctor, let's say the doctor denies something that you're saying or kind of pushes you over, like let them know like okay, can I have that in writing or can you put that on my record that you don't think I should have?

leslie_field (39:30.791)
Mm-hmm.

alyssa_truelove (39:34.635)
an ultrasound or whatever that may be, right? Because, and having that person with you is almost like you have like a bodyguard, like somebody there to support you and be with you, right? It can make a huge difference.

leslie_field (39:37.474)
Mm-hmm.

leslie_field (39:43.096)
Yeah?

leslie_field (39:46.41)
apps, I feel like we could, we're going to pause on this whole moment because doctors appointments. Can I tell you, oh my gosh, so funny story. I just saw a doctor, I mean, is it funny? It's kind of just normal for me. I saw a doctor the other day and I'll never forget and I actually, no, two, I've had two doctors compliment me lately. So I must have finally got myself together. One said,

alyssa_truelove (39:50.523)
Yeah

alyssa_truelove (40:00.525)
Right?

leslie_field (40:11.626)
I've never seen such great, I brought her my medication list on a Word doc and usually the PA, physician's assistant takes it and they put it in. No, they scanned my actual document, which I was so embarrassed about because this doctor, this is when I take it, this is the medication, this is why I take it because me and you know we probably have a lot of meds. And so she actually was like, I was so impressed with that document. And I like...

alyssa_truelove (40:16.662)
Yeah.

alyssa_truelove (40:32.343)
Yeah!

leslie_field (40:37.826)
turned red because I was like embarrassed, which is so funny because I was so proud of myself. But I did this whole social media post where like, I was like, I got the gold star today from my doctor. Like, thank you very much. So that just happened to me. And then, I know, I was like, God, it took me so long to do this, but apparently I know what I'm doing. The second one was my doctor was like, you're so knowledgeable. He was like, he was like wowed.

alyssa_truelove (40:50.784)
I love that.

leslie_field (41:01.078)
I was like, yeah, I have a million skin conditions. You better believe I came in here ready to talk about all of them and all the places. Like I came prepared. And that was the point I wanted to bring up. Every time I go to the doctor's office, there is this thing I always think about and it's perfectly aligned with what you're saying. If you're going to a doctor and you haven't thought about why you're going in some detail, and you said this more beautifully, but yeah, if you're showing up and you're just like, I got there and that's my win, ugh.

It's kind of like there's a little bit more room for improvement there. Like you gotta come a little bit prepared. It's not just getting to the appointment and getting your butt there, which in itself can feel like a lot sometimes. It can be like a full mission, but you have to prep. And I always laugh, I'm like, seriously, every time I go to the doctor, I laugh and I go, why was I never given the manual that tells me that you can't just be like, ta-da, I'm here. Like that's not enough. Like you have to really.

alyssa_truelove (41:33.829)
Mm-hmm.

alyssa_truelove (41:40.855)
It can be a mission for sure, for sure. Yeah.

alyssa_truelove (41:58.521)
Yeah!

leslie_field (41:59.534)
Come prepared and I get it, it's our bodies, we're exhausted, maybe we have a lot of medical things happening, maybe we have sick children, maybe our work is really busy. The last thing you wanna do is like you said, maybe you didn't say that, because you seem very gung-ho about your tracker and I totally applaud you and I'm inspired. But yes, I do the same thing. I'm like, I know that doctor's appointment's coming, I need to come in prepared. This is not something I can just gloss over. So that's why I'm glad we just paused for a second.

alyssa_truelove (42:26.712)
Yeah.

leslie_field (42:27.474)
If you don't show up with your doctor's appointment with something like you're kind of doing it wrong is like kind of my suggestion.

alyssa_truelove (42:35.715)
Well, and it's also that you want to, you have to think, right? Doctors and especially specialists or surgeons, they are seeing so many people.

Right? They're seeing so many people that by the time you get to your follow-up or the time you're here, they, yes, they maybe scan your form before you go in, right? But you're, you being prepared, like you said, with that information, that medical list, is just more ammunition, more things so they can help you more. Right? So that will be able to help you more.

leslie_field (43:03.118)
Woof! Woof!

leslie_field (43:08.526)
Sorry, I just realized she could have edited that out. It's not a big deal. But yeah, sorry. Little muffin. We'll edit out little muffin barking. She's very vocal. But yes, sorry, I cut you off on that moment.

alyssa_truelove (43:16.707)
That's okay.

alyssa_truelove (43:22.125)
No, no, no, no. I forgot what I was saying. No.

leslie_field (43:24.01)
Well, the doctors and the specialists and all the good stuff.

alyssa_truelove (43:26.947)
Oh, yes. I will tell you though, I was not a tracker person before, and that's where, and we're gonna lead into this, but that's why when I...

have been creating resources and what I'm doing now has really been inspired by that because I wanted to find a way that works for me because I am not, certain things I love to do on the computer and I do a lot on the computer and there's amazing things you can do. But when it comes to my tracker, like I have it, it's like a printed thing like that I print out almost like in a binder and it's like little check boxes. It's super cute because I want to want to do it, you know? It's, let's not.

leslie_field (44:06.315)
Yeah. Yeah.

alyssa_truelove (44:08.877)
make it clinical, let's make it fun. Let's make it so it's a resource that you want to use, you know?

leslie_field (44:11.114)
Yeah.

Yeah, no, totally. I love that. So we've gone and covered so much and I feel like, obviously, there's so many more directions we can go. But I guess I wanted to like take a little turn here and talk about maybe the depth of maybe the emotions and go back to those, you know, those dark moments that you've had to move through. And I wonder if you'd be

alyssa_truelove (44:17.092)
Yeah.

alyssa_truelove (44:30.317)
Yeah.

leslie_field (44:42.874)
how do you get through those moments when you're in utter pain or just, you know, at the, at the moment of what do I do? Like, tell me more about how you moved through those moments.

alyssa_truelove (44:56.543)
Yeah, like I have definitely had very dark moments where it just felt too much to handle. Like I would just be curled up in a ball in the corner, bawling my eyes out. And I just felt so helpless and like I couldn't do anything. And it's hard. It's hard when you feel that way because...

your body is attacking you. Like your body, your safe place, what holds all your organs, you know, is you're being attacked by your body. It's such, and if you've never experienced it, it's such an intensely emotional thing to feel, because...

you just feel so let down by your body and you start to hate your body. And I went through that where I really, I had a lot of anger and a lot of hate towards my body in the fact of why is my body doing this? Like, can it just give me a break? I'm frustrated, I'm angry, and that's not emotions I normally feel. So for me, it was kind of scary in a way

leslie_field (45:44.418)
Hmm

leslie_field (45:48.883)
Mmm.

alyssa_truelove (46:11.969)
I was really losing a lot of who I was and I think that that was really the scariest part but something that helped me, so one of the things for flares that I wanna share because my therapist and I we kind of came up with this idea and I'm obsessed with it now. So it's something I do to reframe my brain because I think that's a lot of it sometimes, right? Is reframing the way that you think about things. So what I've created is my flair box.

leslie_field (46:32.347)
Hmm.

alyssa_truelove (46:41.935)
So I have a box and inside of it is things that I love. So like a special pair of pajamas and I have some treats in there. I've got a special candle and I have a note to myself. And on the note, it basically says, this gives you permission to have a flair day.

permission to relax, permission to binge watch Netflix, and to really let yourself be, right? And it's really cute, it made it all cute. But, so now when my body is in that pain, it's like my brain is like, okay, so this is happening, so then this happens, right? So then I go get my flare box, and I give myself permission to be in that moment, and realize it's okay. Because another thing that I,

leslie_field (47:25.454)
Hmm.

alyssa_truelove (47:37.589)
than my dark moments, well it is one of my dark moments, but like is my thought that I'm lazy. Is the thought that I'm lazy and I'm not doing enough and I think this is also like my generational thing, but like that you are, your worth is connected to your work. You know, what you're doing, your career, how much you're working, what you're providing, like all of that stuff, right?

leslie_field (47:56.715)
Mm-hmm.

leslie_field (48:02.067)
Yeah.

alyssa_truelove (48:03.719)
I was so hung up on the fact that I was lazy if I would lay on the couch. I'm lazy I could be doing this this and this you know and That is something that it also caused a lot of arguments and fights in my house um just because

My husband, who I'm, like I said, I'm so fortunate, he's such a supporter and the biggest advocate for myself and anyone suffering with this, but he would say to me, you need to listen to your body, you need to rest, you need to, like you have to realize that you're living with a chronic illness. Like you are doing these things, like you are working these 50 hour work weeks and then doing this and this and you're not giving your body time to rest, you're living like there's nothing wrong with you.

which is then making it worse, you know? So, and I would always kind of push back and be like, no, I'm fine, like, it's not a big deal, but then he would see me curled up, bawling my eyes out, or some days when I shower and it gets to be too much, so I'm just curled up at the bottom of my shower crying as the shower's falling on me, you know? So, the flare box for me has made a huge difference because it just really changes the way I think about it.

leslie_field (48:53.051)
Mm-hmm.

leslie_field (49:19.378)
I love that. I really, really love that. I think this was another parallel that was coming up, that lazy concept. I really, really struggle with that. I could say so much on that piece, where my brain is telling me lots of things and my body is telling me something completely different. And it's been a lot of work personally, so I totally identify with this. I've had to do a lot of work around...

alyssa_truelove (49:26.508)
Yeah.

leslie_field (49:47.87)
It's okay to go slow. It's okay that I can't function and maybe do as much as others. Doesn't mean I love that. Doesn't mean I wouldn't change it if I could. But it's accepting the reality of what's right in front of me has been one of my biggest parts of my journey, is having this acceptance and not denying. And yeah, finding an alignment that they can work together.

alyssa_truelove (49:55.717)
Mm-hmm

alyssa_truelove (50:02.799)
Yeah.

leslie_field (50:14.802)
I used to work a really, really busy job and my body was my tool to do the job that I loved and I sort of ignored her and put her through it and I wasn't very kind. So I totally identify with everything you're saying and I'm going to circle back really quick to a minute. I remembered you were talking about bringing people to your appointments. I just want to highlight that one more time. Yes, yes, yes, yes, yes. So I used to be really private.

alyssa_truelove (50:17.547)
Mm-hmm. Yes.

alyssa_truelove (50:26.523)
Mm-hmm

alyssa_truelove (50:41.594)
Yeah.

leslie_field (50:43.694)
with my more recent appointments, because I'd seen nephrologists, which are kidney doctors, for, as we know, like 20 years now. And I would never really involve my husband until fairly recently, because the numbers started to change. Basically, I was very stable for a long time, so I wanted to do the get in and out, like, I'm fine, right? Everything's good, I'm leaving, okay? But things started to change, so my husband said, hey, I want to be more of an active role. And it was really interesting, because at first I was like, I don't, this is private, this is my stuff, I don't really want you here.

alyssa_truelove (50:49.668)
Yeah.

alyssa_truelove (50:57.803)
Mm-hmm. Yeah.

leslie_field (51:13.258)
And I learned really quickly that just to soften, because when he is present, he does pick up more information. We had to put some ground rules in place. So if you're like me, you might have to have some like ground rules because my husband or some people who love and care for you, like it's very different for them. And maybe you're one of those people who are listening, who doesn't have something going on with themselves, but you support or love someone who does. I could, I watch him.

alyssa_truelove (51:22.702)
Mm-hmm.

alyssa_truelove (51:33.273)
Yes.

leslie_field (51:41.758)
as he sits beside me, it's very challenging because he loves me so much and the way he approaches me and my sickness or illness is very different than how I approach it. We have a lot of things that are similar, but it's a little different. So just so you know, if you have that person come, maybe you do have to have some ground rules. So we have some very specific rules about how I lead the meeting. This is my meeting and other few little things that we do and we found a very good way.

alyssa_truelove (52:01.614)
Yeah.

Yes.

leslie_field (52:10.614)
where he's been a really beautiful support for me. So even me who's been through, and you who've been through so many, so many meetings, I actually have been in recent ones where I'm sitting there getting the information and I could just feel my body shutting down. I'm like, this is too heavy, this is too much, this is gonna cause a lot of emotional turmoil. I'm always just so thankful someone else is there. And obviously another one is all of us seem to have cell phones these days. You can always ask the doctor for permission to record.

alyssa_truelove (52:27.416)
Mm-hmm.

leslie_field (52:40.47)
which I often do now, and usually they'll give me permission. But one of the other things you mentioned to me, and now we're going in a different direction, is one of the doctors that you said was a pretty pivotal doctor. I really want you to share what that doctor said to you, the newer family doctor that you were working with, because we're not always gonna find doctors that have the best bedside manner, or they're going to say things that really affect us in a way that's...

alyssa_truelove (52:49.881)
Ha!

alyssa_truelove (53:00.386)
Oh yes!

alyssa_truelove (53:06.468)
Yeah.

leslie_field (53:09.638)
we don't really like, but sometimes we find those beautiful, I don't know, angels, or those perfect people who come to you at that perfect moment, and I just love to share that story.

alyssa_truelove (53:18.475)
Yes, and this circles perfectly because this goes into kind of that, yeah, what I'm doing today in the second diagnosis that I had.

leslie_field (53:22.026)
what you're doing today.

leslie_field (53:26.539)
Yeah.

alyssa_truelove (53:26.983)
So I, as we were talking about, I was now going through everything with my body and it was just getting worse and it was getting to the point, like I said, brain fog. I couldn't really function in things that I knew weren't normal and weren't in my normal pain level one. So then I finally get an appointment with my new family doctor. So during COVID, my family doctor retired, I got a new one.

alyssa_truelove (53:56.877)
kind of a medical like meds check that's it so I never really met him but I finally got an in-person appointment so I went in and to this one I actually this one I think I went there was a reason something I went by myself I don't remember why because I don't normally but I went by myself but I had all my notes my script like I'm ready to go I'm like I don't know who this guy is but I said to my husband I said I'm gonna go to this appointment and

leslie_field (54:17.058)
You're ready to go, yeah.

alyssa_truelove (54:24.311)
I'm getting answers. Like he is doing tests, there's something that's going to happen, I'm getting a result from this meeting, I'm not leaving this meeting, him telling me it's nothing, right? So I go in and... I'm not leaving this meeting, I'm getting a result from this meeting, I'm not leaving this meeting, I'm getting a result from this meeting, I'm not leaving this meeting, I'm getting a result from this meeting, I'm not leaving this meeting, I'm getting a result from this meeting,

he listens to me. First of all, you could see as I'm explaining things to him and I'm kind of a new patient to him, right? Because he hasn't really seen me in person but he's reading my chart. He's reading everything, you know? And he said to me, at one point he said, I'm so, he's like, I'm so sorry that you have gone to go through all of this. And then he said to me at one point during this, so this was my first meeting with him, he said,

basically told me my feelings were valid and my pain was valid and what I was feeling was valid, which was so surprising to me. He also, he was touching me, he was doing a couple things and then he's like, okay, so we're gonna run all of these tests. He's like, I'm pretty sure I know what's going on, but we're gonna do these tests to find out. He said, what I want you to do is really to focus on being happy.

He said, you need to focus on being happy and relieving the stress. And that's kind of where, and then he said, we're gonna come back and we're gonna make a plan for whatever is happening, like in your body. So then I left that appointment and I got in the car and I was bawling. So I called my husband, I was bawling, and he thought, I just maybe got steamrolled, like he thought what has happened to me so many times is they just kind of said,

It's nothing, you're fine, you know? Kind of that old, it's all in your head, it's just the end-ower, it's all in your head. Which, I'm going to say this again, to anybody listening, your feelings are valid. What you are feeling in your body is valid, and no, it is not in your head. And no, you're not over-exaggerating. Because that is something I used to do a lot, is tell myself I was over-exaggerating. So you are not. If you are feeling it, and if your brain is telling you it, it is happening in your body.

leslie_field (56:01.199)
Mm-hmm.

leslie_field (56:06.741)
Yeah.

alyssa_truelove (56:31.757)
So then I go and I get all the tests done. I go, I do whatever test he wants me to get done. So then I go back and he tells me, so it ends up that I have fibromyalgia, kind of from elimination of, what did he call it? He said it is the, the,

the elimination of diseases. So essentially, he does all of the tests. He was pretty sure he knew that's what it was, but he wanted to outlaw anything else that could have been. And then his plan for me, so he did put me on some medications, but he went back to, he said, okay, he said, you are going to have this, like your life is going to change. You're gonna have this for the rest of your life, but you need to focus on being happy and do things that...

leslie_field (56:54.53)
Mm-hmm.

leslie_field (57:00.906)
Yeah. Yeah.

alyssa_truelove (57:20.763)
Sorry. Do things that are being, make you happy and building your life in a way that makes you happy. So things that do not serve you, people that maybe bring drama, you need to like not even worry about that and focus on your happiness.

which was so mind blowing to me. I couldn't, I literally couldn't believe it that he was telling me this because it was so validating. And I have never in my, what am I now, 31? My 31 years felt so validated by a doctor before and I just, I knew that this is something now that I'm gonna have for the rest of my life and that will lead into the next thing, but.

leslie_field (57:48.407)
Yeah.

leslie_field (57:56.706)
Hmm.

alyssa_truelove (58:05.987)
to know how he delivered that message and how he wanted to set up a plan and his approach, like I will forever be thankful for that doctor.

leslie_field (58:15.278)
Absolutely.

leslie_field (58:19.778)
For as much as we say, you know, we want to empower ourselves, but yet we do respect the fact that these people went to medical school and they have a lot of knowledge. You know, they are the specialists. So for as much as I'm like, I want to do my own research, I want to find my own resources, I want to maybe work with other specialists, we give as much as we don't want to, there's still that we have to give them, I don't know, a little bit more. Yeah. Yeah. And just to know that...

alyssa_truelove (58:45.883)
Grace, a little bit of grace, yeah.

leslie_field (58:50.83)
They're doing the best they can and with the knowledge they have. And there's something about the power of their words is what I guess I'm getting at. And for as much as we wanna say, I'm gonna ignore that doctor and forget what they said, whatever, their words have weight to us. And especially in those moments, all doctors and their words and what they're saying have weight. But I just wanted to highlight this moment because...

alyssa_truelove (58:58.004)
Yes.

alyssa_truelove (59:08.011)
Mm-hmm

leslie_field (59:18.974)
I know that was probably a very pivotal moment for you. And I'm so grateful you found that doctor and that doctor was able to deliver that message to you because I know it had a profound impact on you.

alyssa_truelove (59:23.919)
Oh, me too.

alyssa_truelove (59:29.587)
It really did. It literally changed my life. His approach and how he did, it changed my life in a way that I realized I have two paths I can go down right now. One is the path that I've been doing this entire time which clearly as we know was not working out for me. Or I could go down a different path and realize, okay, so this is something I'm going to have instead of fighting against my chronic illness, instead of, well now

What is it? Like I always joke with chronic illnesses. I feel like it's Pokemon like you're catching them all get all the cards You know my collection is growing um but It um my gosh my train of thought

leslie_field (01:00:00.769)
Hehehehehehe

leslie_field (01:00:06.623)
Totally.

alyssa_truelove (01:00:15.683)
Brain fog, see brain fog just popping up. I'm like, what was I just going, oh, I could go down my other path. And the other path is learning to creating a life around my chronic illness, right? And creating a life where that's part of it. And I made huge within, so this diagnosis happened last year. And within that year, I made huge decisions. I actually resigned from my job and I took a break because I realized I need to,

leslie_field (01:00:18.194)
It's...

alyssa_truelove (01:00:45.677)
time in my life give my body time to process and see what I need to do right and see what I can do because at the end of the day and this has been a huge shift for me I never was this person that thought about that but

leslie_field (01:00:55.456)
Yeah.

alyssa_truelove (01:01:04.343)
is you only, energy is your most valuable currency, right? Money, yes, obviously we need money to live, it's important, you know, you need money, but energy is your most valuable sense of currency and if you're familiar with the spoon theory, as Christine, I don't remember her last name, but she created the spoon theory and it is such an incredible way to look at your energy and if you do not know what that is, research the spoon theory, it'll change your life.

but

I realize at that moment that energy and the energy I have in my day is sacred, right? So I need to be super mindful of where I'm putting that energy and where I'm giving it to see people in my life. Are they giving me energy or is it draining when I hang out with them? My job. I don't need to be the best at something or climb the corporate ladder. I need to obviously make money to survive because that's important.

but...

I want that time and I want to use the time when my body's feeling good to spend with the people I love, to travel, to do things that are important to me. So it was a huge, huge moment for me and I just, I felt like I almost got a second chance. Like being diagnosed as, although it is not the best news you want to hear, right? But it has impacted my life in such a wonderful way.

alyssa_truelove (01:02:38.273)
that I have this new appreciation for every moment and it's really changed my whole life.

leslie_field (01:02:38.42)
Mm-hmm.

leslie_field (01:02:44.398)
Oh, yeah. I'm so glad you shared that. I, it's really, I call it medicine. This is the type of medicine I want right now because it just, it's, I don't even wanna touch that because it's just so beautiful and I appreciate you sharing that and it's not an easy path or road to even just come to that realization. And I totally identify and have parallels too because we wanna fight against it but it's coming into that acceptance.

alyssa_truelove (01:02:52.331)
Yes.

leslie_field (01:03:13.19)
and just supporting and loving ourselves at the end of the day, instead of fighting against what's happening, you know? Because at the end of the day, it's not gonna work out probably if you fight against your body.

alyssa_truelove (01:03:16.664)
Yes.

alyssa_truelove (01:03:23.695)
No, and yeah, and like we said, like learning to love that new version of you, right? And almost.

like what I like to do and sometimes I'm a cheeseball sometimes but it's learning and almost like date yourself. Like take yourself out on dates or do things and find things that you enjoy now because those things might be different right? Maybe now going and getting flowers for yourself once a week. Maybe that's something that you're doing for yourself that makes you happy and brings you joy that you know that maybe when you're having a flare and you can look at your flower.

and you know those little things you can do and Every day do something for yourself whether it is just you know putting your moisturizer on or you know writing yourself a journal like a note or taking that time to maybe take a bath or Eat something yummy that you wanted to eat like do something for you because those moments are important

leslie_field (01:04:27.806)
I think this is leading into perfectly, and we've been hearing it all along about what you're creating and what you're doing. So you have your business called the Chronically Ill Society, and I know that you're gonna be launching a course, and your mission is to help conserve and save your spoons, which is connected to the spoon theory. And so before we close, I mean, we can hear it. You are an advocate. I believe you do some coaching with people.

alyssa_truelove (01:04:49.12)
Yes.

leslie_field (01:04:56.75)
Tell me more about this part of your life and the work that you're doing.

alyssa_truelove (01:05:01.675)
Yes, thank you. Yeah, so once I kind of went down this road and I started doing these things, like example the tracker or different things like this, I realized that for so long in work and because at work I'm very type A, I have systems and processes, I have everything all super organized and I'm trying to be efficient in every part of my work that I do when I was at my other job. And then I realized why am I not putting that energy into my own life?

Right? Why am I not trying to make my life easier? So I started to do things and I started to like you said actually one of the resources I've created is like a chart with all your medicines and your doctors and stuff So that's super cool that you have one too and different things that Allow you to save your spoons so that you can use them and use your energy for what you want to use it for Right, so I have created and we're gonna be launching in April, which I'm so excited

leslie_field (01:05:45.422)
Mm-hmm.

leslie_field (01:06:00.6)
Woohoo!

alyssa_truelove (01:06:01.509)
chronically fulfilled life. So it's a gonna be a high-touch group coaching program for all of the chronic illness warriors out there and I am your lead. You'll be going along this with me but it's tools, resource, guidance, calls to really help you thrive and learn how to live with your chronic illness and with a supportive community of warriors going through just what you are but to really

systems, prioritizing your self-care, and really creating a life that you love. Looking, we're gonna dive into all aspects of your life in the nice wheel of life that we have, because they are all important, all of them, to really not allow your chronic illness to define you, but be a part of who you are, and really take the strength that you have to use those. So I'm just, I'm so excited, and like you said,

people online and that have shared their stories and I'm just so excited to be able to help make everybody save their spoons so they can do more things that they love!

leslie_field (01:07:09.15)
Yes, absolutely. And your passion for this comes across very clearly. I can tell that you are meant to do this, that this is going to be something that just is so connected to who you are and your soul and your heart. And after we talked the other day, I knew that because it's so interesting because you sit there and you go, that's what Alyssa, you know, you're here for a lot of things, but I know that you're really here to do that work.

and we're very grateful to have you doing that work. So thank you for what you're doing and for what you're launching. No, and I genuinely mean it because you wanna know why? I was thinking about what you're creating and building, I thought, I don't wanna do that. So I was like, that's not something I would wanna do. Like I could tell like Alyssa's really passionate about that. I'm like, my thing, I wanna podcast. I wanna share this story of people just like Alyssa so that we can.

alyssa_truelove (01:07:43.407)
Thank you, oh my gosh, you're gonna make me cry. Yeah.

alyssa_truelove (01:07:52.503)
Yeah. Ahahaha.

alyssa_truelove (01:08:01.612)
Yeah!

leslie_field (01:08:05.93)
you know, get their stories out there, what it's really like to be living, you know, in our bodies when things don't go as planned. And it's just been such a pleasure chatting with you today. So thank you so much, Alyssa.

alyssa_truelove (01:08:11.672)
Yes.

alyssa_truelove (01:08:15.803)
Oh my gosh. Thank you. And remember everybody that's listening, you brought it up again, but anybody that is listening, you are not alone. That is like, if one thing can come out of this, two things actually, your feelings and what you're feeling is valid and you are not alone. There is a community of people out there and you need to find your people to be that support system for you as well. And well, you've got two here, so.

leslie_field (01:08:42.762)
Woohoo! Yes, and people are genuinely, genuinely will be there for you. It's really beautiful. So thank you, thank you, Alyssa. We'll be linking to all your stuff in the show notes so people can find you. And I'm wishing you a beautiful day and I continue to hope that you will feel good each and every day in your body.

alyssa_truelove (01:09:03.403)
Yes, I am wishing everybody big hugs, sending love, and wishing you a pain-free day.

leslie_field (01:09:08.651)
Woohoo! Yes! Alright, I gotta push stop!