Putting The Pieces Together: Alanna’s Revised Story

Speaker 1:
0:03

Welcome to EndoBattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us.

Speaker 2:
0:41

Welcome back to EndoBattery. Grab your cup of tea or coffee and have a seat at the table with us. My name is Chelsea and I am taking over for Alana because today we are going to take the time to interview her. Alana shared her story with the audience in the past and it's been a few years since we've talked about things and we just felt like it might be a good opportunity for her to reflect on what she went through during her initial endometriosis diagnosis, through getting treated for endometriosis and seeing what she's learned over these last few years working in the advocacy space and how it applies to her story. So, if we can welcome Alana today Hi, alana, hi, this is different to be on the other side.

Speaker 2:
1:27

It's kind of weird for me being on this side. I'm not going to lie, but here we are, but here we are, here we are, we're winging it. If you want to go ahead and just maybe dive into a recap of what you experienced early on with your endometriosis, just so the audience has a great idea of kind of what you've been through if they're new to your story.

Speaker 1:
1:46

So I would say a lot has changed because, I mean, I think for many of us, the more we learn, the more we learn about our story. And I don't know if you've experienced this, but for me I blacked out a lot of my story. I don't know if it was like the desire to never go back there or self-preservation. Just briefly, I think initially my story was you know, I always had the painful periods as it goes.

Speaker 1:
2:12

You know, I had UTIs when I was in high school. I was being tested all the time for UTIs. Then they never came back with anything in them and they kept trying to figure out what was going on with me. I was in such excruciating pain and it also was interesting, because every time my cycle came around I passed a kidney stone, which I thought was really interesting, and we still have yet to uncover why this was. But I haven't since my excision surgery. Oh, wow, so that's interesting too, right, yeah? So, long story short, I didn't really think much of it until it was my first year of marriage.

Speaker 1:
2:50

We were about to go on a trip for our anniversary and a week before we left I got a kidney stone. I got this kidney stone. My husband happened to be out of town at the time, working because he worked more out of town then, and so my sister-in-law came, picked me up. I was throwing up everywhere, oh no. So she took me to the hospital, to the ER, and they were like well, you have a kidney stone. And I knew I had a kidney stone. I could tell them right away this is a kidney stone, but it was a big one. And they're like, ok, we're going to do an x-ray. Okay, just give me morphine, give me something. I need some relief. And they were like we're going to give you a muscle relaxer. Oh, that's nice. So let's talk about the care that they give you in the ER for things like the known quantities of kidney stones and how painful they are. Right, we'll give you a muscle relaxer.

Speaker 2:
3:39

Yeah, that does not seem like it would be the effective route to take for the pain that comes with a kidney stone. Because they are awful.

Speaker 1:
3:45

Right Awful, and the doctor at the time was more interested in flirting with the nurses than taking care of the patients. And so they did the x-ray. But they found something on my ovary and he's like we need to figure out what this is. Mind you, I had a nine millimeter stone stuck in my ureter and he's like we need to figure out what this is. So he sent me back to ultrasound. I have never seen my husband so furious in his life as he was in that moment, because he saw how much pain I was in. They didn't give me any pain meds to like do a vaginal ultrasound. And the ultrasound tech is like okay, I'm so sorry, like she felt awful, but she's just doing what she's been asked to do. Yeah, long story short, he comes back and he goes well, I don't think it's cancerous, so we're just going to send you to an OBGYN. And I'm like great, but that doesn't take care of the problem. So I went back.

Speaker 1:
4:41

He sent me home that night for the kidney stone, that big Ouch, and I came back the next day. I was like I can't do this and the doctor was like he did what the other ER doc was like this is not okay.

Speaker 2:
4:51

Yeah, thank you, especially if you're in that level of pain to where you're vomiting from the pain because it is so bad. Right, that is not a great level of care that you received.

Speaker 1:
5:01

No, and that's why I think, looking back at it now, if you're thinking about the level of care people with endometriosis get when they go on with extreme pain and it's pretty abysmal most of the time and, like I said, the kidney stone is a known quantity, you know they're painful, right.

Speaker 2:
5:18

You can see it a lot of times on imaging you understand people talk about it as one of the most painful things you can experience.

Speaker 1:
5:24

Exactly, and so he sent me home and then got a referral to my OBGYN after this kidney stone was removed and it was an effort to make that happen. So they sent me home and then I saw the OBGYN. She goes. I'm pretty sure you know what it is. I'm 95% sure it's endometriosis. But the thing was is that she made me think that this was an extremely rare condition, Right?

Speaker 2:
5:50

And that one thing that I've noticed is that it seems like doctors tend to play down how serious it is too yeah, you know where they're just like. Oh, you have endometriosis, not a big deal and they don't seem to take into consideration the fact that it can affect our bowels and our kidneys and our diaphragms and our lungs and every other single area of the body. It's a systemic disease that causes, you know, loss of organs, and they don't seem to understand that, it seems.

Speaker 1:
6:17

It seems, and I don't. I'm sitting here thinking about it. I really don't remember if she even asked me if my periods were painful. So the other part of that, too, was I had a miscarriage pretty early on and I didn't put that correlation together. I mean, we weren't trying, I was on birth control, oddly enough, but it wasn't working.

Speaker 2:
6:37

Clearly, right, right, or I missed something you know, because ADHD hashtag ADHD, I forgot my birth control because there was a squirrel in there.

Speaker 1:
6:48

Yeah, and I didn't have the pain on the birth control. Now that I'm thinking about it, I don't know, there's probably a lot of correlation there. But so I went and she was like, well, we're going to go ahead and do a laparoscopic ablation surgery and I was like, okay, mind you, I thought this was rare, I thought that this was not very common. I had a chocolate cyst the size of a very large egg and I was like, okay, well, you know what they do when they aren't trained to properly take care of those. Now that I know this, now they drain it, but it gets everywhere, right? Yep Makes adhesions. Does all this other stuff with your ovary, right?

Speaker 2:
7:28

Yep Creates inflammation. It's yeah, it's a nightmare.

Speaker 1:
7:30

Right. So then she's like we're going to put you on this drug called Lupron and Lupron will slow the progression, if not cure the endometriosis. And I said, okay. Again, I did ask at that point what are the side effects, she goes, you're going to have? You could potentially have hot flashes because you're not cycling, there is risk for bone loss, you know they have seen that further on in the line and. But it's supposed to really help and and, mind you, it was like a thousand dollars a month for this shot and insurance didn't cover it, or they did cover it, but not a lot of it Anyway. So we ended up doing that for about three months and then I got off of it because of insurance purposes. Well, then we went and did the Marina.

Speaker 1:
8:16

IUD and I felt awful on that. I came to like 30 pounds, but it didn't help my symptoms. I was in so much pain all the time.

Speaker 2:
8:23

Yeah, and I think that's really common actually with patients with endo, where sometimes they get on these progesterone or, you know, combined IUDs and they do well, but a lot of times they end up worse off than they were before the IUD.

Speaker 1:
8:38

And that was the case for me. So, like then, I was sleeping one night, turned over in bed and literally felt like I was dying, something like my intestines had twisted to the point where I was throwing up. I was clammy white, was quite literally seeing stars from the pain, and I didn't wake my husband up because I wanted him to sleep and I was like, no way, it's nothing, because at that point I was already gaslighting myself into thinking my pain wasn't that bad, right, into thinking it's just in my head, right. And so he woke up and he was like what in the world, you know? Like no, wake me up, we are going to the hospital.

Speaker 1:
9:17

So, after all that, I had another endometrioma on my other ovary, so they did another surgery. But they're like okay, we're going to laparoscopically do another ablation. And I said okay, and I just thought this was my lot in life, obviously. And she goes if ever I don't feel like it's safe to do the laparoscopic, I'm going to do a laparotomy. And I didn't think anything of it, thinking, wow, that's not really going to happen.

Speaker 2:
9:42

Yeah, I did. Wow, that's not really gonna happen.

Speaker 1:
9:47

Yeah it did. Yep, you woke up with a full incision across your abdomen. Yes, oh yeah, like bigger than my c-sections. Oh, wow, so it took me. I mean, she was like I didn't feel comfortable doing a laparoscopic surgery with how much endo you had on your intestines and I was like okay and just to clarify, this doctor was just a normal OBGYN, run of the mill, normal doctor, not a specialist.

Speaker 2:
10:08

correct, right, but she touted herself as a specialist.

Speaker 1:
10:12

Okay, so that's where for me, and why I started this podcast was because a lot of the story came from the fact that I was told by the doctor that I was seeing, which I do think she had good intentions and I do think she was way more knowledgeable than a lot of doctors, but she was like I treat a bunch of patients here in this area. She's like that's my bread and butter, so of course, I thought she knew everything there was Right and I had full faith in her. I had full trust in her that she was helping me and that she knew everything about this disease.

Speaker 1:
10:44

It got to the point where after that surgery and it took me months to heal from that surgery Like I couldn't lay flat for almost three months and I couldn't I mean forget intimacy because I could barely function. I ended up getting back on Lupron for nine months because I didn't know any different and I wanted to preserve my fertility.

Speaker 1:
11:04

So, that was the other part of this. Right, it's because I wanted to have kids but I didn't want them right at that point. So she said, well, in order to maybe help preserve that fertility and for it to slow the progression, or I don't know if she said cure. I don't think she said cure, but she said it could get rid of the endo. We don't know she goes, but until then let's put you on the loop run. It'll help you progress with that and then we'll we'll go from there.

Speaker 1:
11:32

And so I was on it for nine months, came off of it and I think three months after I got pregnant, but I had never had a period, so I didn't even know how far along I was when I got pregnant. She told me. I remember her telling me during my visits. You know, some people don't have any endo once after they have a baby or any symptoms. And I was like so hopeful After I had my baby and I had a C-section because she was breech and she couldn't flip After I having the baby and I was in so much pain all the time and my cycle started eight weeks postpartum. Ouch, that's quick.

Speaker 2:
12:03

That's fast right, especially because you were nursing.

Speaker 1:
12:05

Yes, I was yeah, Yep, and so my pain got worse and so I didn't think I'd have another baby. Meanwhile she's trying to. She did uterine biopsies, like three uterine biopsies in between babies uterine biopsies in between babies and those are awful.

Speaker 2:
12:19

They're awful and they make it seem like it's not going to be an awful procedure. It's like getting an IUD placed where you're like and I had the same thing with the IUD.

Speaker 1:
12:26

I almost passed out in the office, yeah, and they, they were like here take some Advil, yeah. So what's the solution? All the time to our pain, we take NSAIDs and then we take the narcotic pain medication and that's supposed to get us by in life, right. But we know they're not good for us. Nope, we know there are side effects from them, right. High addiction rates, huge, and then anxiety, depression, yep, all of those things, right? Meanwhile, and also I have this kidney issue. So I'm taking NSAIDs, I'm taking Advil and all those other things narcotics and my kidneys are terrible.

Speaker 2:
13:02

Right, it's a bad recipe, it's a bad recipe.

Speaker 1:
13:05

So, and then on top of that, we have, you know, like the Luprons or Alyssas, which, by the way, don't do anything Like. They might give you some symptomatic relief. But is it worth it? In my opinion, not really. That's something you'd have to discuss with your doctor.

Speaker 2:
13:26

But for me it wasn't worth it. I will say, in my time of endometriosis advocacy I know maybe two or three people that benefited from those medications and that's it, after talking to hundreds, if not more than that of people, so it doesn't help most people. And again, yeah, that is a conversation for your doctor, for sure, but it's not the cure-all drug that the commercials tout, and it's not.

Speaker 1:
13:47

Well, that's what's funny. So you said commercials had my second baby, again C-section. So there's a correlation here. I didn't know it. After her I had such bad periods. I was never off my cycle. I bled months on end. I maybe had a day or two a month where I wasn't bleeding. I was anemic and in pain. I remember driving places, not knowing how I got there because the brain fog and fatigue were so bad. I was short with my kids and there were babies. And I just remember thinking this is not the life I wanted, because I couldn't get off the couch half the time. I could sleep for hours on end, like probably 10 or 12 hours, and still be exhausted all the time and I couldn't retain anything. And I remember feeling like I felt lazy and I felt inadequate. And then it kind of steamrolled into am I depressed?

Speaker 1:
14:40

You know, yeah, is this how? But I just there was so much self-doubt in that space. But again and here's a subset of that is I'm telling people about endometriosis and about this doctor who can help them, because this was my belief, right, like this person was the person that could help anyone. And then it got to the point after my second pregnancy where I had seen this commercial for oralisa and I was like it's the magical drug, right? Yes, and they make this commercial sound like it is like the B's and E's, right. So we went to the doctor and we're like we heard about this thing called oralisa. She's like, oh yeah, it's a great way to help your symptoms or could help stop the growth of endometriosis. I think is really what she said help your symptoms or could help stop the growth of endometriosis. I think is really what she said. And so I took that.

Speaker 1:
15:27

But then I was feeling worse again. Nothing was helping. Again, the bleeding was out of this world and so we started thinking about doing a uterine ablation. And I remember and Elliot's talked about this before on the podcast but she said at one appointment it could make your endo angry. And Elliot was like hold on, no, because it gets angry enough. We don't need to add another monster to this, because it was so bad, and I think I single-handedly supported the menstrual sanitary napkins because at that point I actually couldn't even wear tampons because it hurt too. Yep Came to it that I had adenomyosis and it was really bad. I had always had a lot of hip and back and joint pain on top of it and I just thought nothing of it. My endo pain was so bad it kind of covered up a lot of it too, right.

Speaker 2:
16:13

You're kind of in that triage mode where like this is the most pressing symptom and the thing I need to take care of, and even though all these other things hurt, I'm not even going to think about it because I don't have the energy for it.

Speaker 1:
16:24

Exactly. I have the energy to do X, y and Z, but don't you dare put B and C in there, right, because I can't. I can't do it.

Speaker 1:
16:33

Yeah, I ended up learning more from Nancy Snook and like understanding what excision and ablation was and the difference between those, and so I had my surgery, had a hysterectomy because of the adenomyosis and then ultimately ended up taking at that time deciding to take my ovaries as well, because I had reoccurring endometriomas and they were large, and I remember talking to my doctor and saying, if there's a way to keep them, I'd like to do that, but if not, then take them.

Speaker 1:
17:01

But again, I didn't know long lasting effects of that either. I didn't know why you'd want to keep them other than for hormone production. I didn't really know the pros versus cons of that, and so I wish that would have been better explained to me, because I went into my surgery thinking everything was magically going to be better, like intimacy was going to be way better and I wouldn't cry after every time because of pain, I wouldn't be bleeding constantly which is true I don't, but which is the great part about it but I didn't know the other side effects that were going to be coming from not producing your own hormones.

Speaker 1:
17:39

I didn't understand that I still had work to do in understanding my body and healing my body. I think that was the really frustrating part from that perspective, but I came out feeling significantly better, like my life forever changed at that point. I'm such a different person, but when I started this podcast, I think for me it was trying to right the wrongs of guiding people in a direction that was harmful to having more reoccurring surgeries and more medical management than what their body should be going through when it doesn't really manage anything. It might be a bandaid, but it's not managing anything, and so when I started the podcast, I was like I'm gonna do this as a way to like put it out there. Yeah, to tell the truth, but I'm not the expert, so I need someone to talk about it. So that's kind of where my story initially started, but it's obviously progressed quite a bit yeah, no, it's just in the last.

Speaker 2:
18:37

You know how long have we known each other now? Four years, three years, I don't know. It feels like we've been friends for like I have no idea just in the last you know how long have we known each other now?

Speaker 1:
18:43

Four years, three years, I don't know. It feels like we've been friends for like 25 years.

Speaker 2:
18:46

I have no idea. I don't even think it's been that long, has it? I don't know, maybe We've been to two summits together, so three years. Yeah, almost three years I think we started our other venture October of 21, if I remember. So it was right around there. So so, yeah, I think we're going on. We almost have a three-year anniversary coming up.

Speaker 1:
19:02

What are we gonna do? My work wife, we're gonna get ziggy's, we're getting ziggy's we do that anyway, right, hashtag, sponsor us, yeah, please thank ziggy's. We ask every time every time I haven't heard anything from you guys anyways, over the last three years, you, you really have changed a lot.

Speaker 2:
19:18

Your knowledge base is so much more than it was when we started. All of ours are, you know, but you've done a really good job of really diving into the research and connecting with different people that can offer you good information, good education, good resources on things, and you've really worked very hard to do that and I can tell that you've just transformed over these last few years Like a little endo butterfly.

Speaker 1:
19:40

Like a little beautiful endo butterfly. Yeah, it's interesting Looking back at it now. There's a lot of things I wish I would have done different or known more.

Speaker 1:
19:49

Yeah, like what I really wish I would have known how to advocate for myself. I really wish I would have known that it's okay to ask people for their advice and help. I really wish I would have known that there's spaces and avenues to get support and to talk to other Indo warriors about your story. Yeah, and I think that both you and I have felt this in one way or another in that when we started the nonprofit so we both of us are on a board for a local nonprofit here for endometriosis advocacy, support and awareness and education. So it's called Endo Village and you'll hear me talk about it a lot because I'm really proud of the work that we're able to do here and we are wanting to create this space for others to get what we wish we had. I want to encourage people, like if you're feeling lost and not sure what steps to take next, to reach out to people in the community, kind of vet them, but reach out and ask questions. Ask other patients questions, Because I felt so alone and isolated and just felt like this was super rare.

Speaker 1:
20:57

Yeah, and I don't think I was. Truthfully, what's interesting is I didn't even really know the statistics until I started the podcast. Yeah, that's how green I was, Yep. Looking at it now I'm like I recite those probably every day. And so because there's value in each of those numbers, yes.

Speaker 1:
21:16

When you're talking one in 10, potentially one in seven. That one has value. I didn't realize I was in such a community of people, with one in seven to one in 10, depending on who you talk to.

Speaker 2:
21:30

That's huge. That's huge and it makes such a difference Having people around you that understand what you're going through, that understand the ups and downs of this disease and how one day you can feel great and the next day you can feel awful and having that support where it's like, hey, I'm canceling on you, hey, I am not going to make it to this.

Speaker 2:
21:50

I know we committed to doing this but I just don't feel well enough. And having those people in your life where they're like, hey, girl, I get it, can I bring you a heating pack? Do you need me to order you food? Do you need a Ziggy's? Yes, always. But having that support has made all the difference, I know, in both of our worlds, for both of us.

Speaker 1:
22:05

Well, I think too, because something that I didn't really realize. So again, I thought, you know, once I had the surgery, I was magically going to be healed. Things will be so much better. I heard people saying they might need pelvic floor PT, but I was like I'm I'm the lucky one that's not going to need it, and he didn't say anything to me. Yeah, everyone does. Anyone with endo you need pelvic floor PT.

Speaker 2:
22:26

I would agree with you on that. It can really, really really make a huge difference. Huge difference, Huge difference.

Speaker 1:
22:32

But I also didn't realize how much of my endo pain was covering up all of these other conditions that I was having. Yep, since starting this, I have realized that my bendiness is actually a correlation or a condition, and mine happens to be hypermobile EDS, ehlers-danlos Syndrome. Yeah, and so I didn't realize that that's not normal. I mean it goes along with, like heavy painful periods are not normal. Extensive hypermobility is not normal.

Speaker 2:
23:05

Dislocating your job at the dentist office not normal? That's weird, I know they make you think it's normal, though they do. This happens all the time and I'm like I don't think it does.

Speaker 1:
23:14

No, no, no, no. And then you know joint pain and bone loss and hot flashes and brain fog and fatigue. I didn't know until about a year after my surgery that I should be on testosterone. Yeah, how much of a role testosterone played in our lives.

Speaker 2:
23:31

And the end of world. You know, I mean, I love a lot of the stuff that we're doing in there and there's a lot of doctors out there that are starting to push this a lot, but they, they ignore the hormone aspect of it almost completely. Not not all of them, but a good chunk of them will tell you your hormones are fine, you don't need anything, even if you're missing, you know, ovaries and you know, you may have one removed and you may have one leftover.

Speaker 2:
23:56

In your case you had both removed but even with one leftover it can go into ovarian failure, right, and especially if they, you know, operated on it and we've done really a really good job. I feel like over these last few years in general, like I say, we as the endometriosis advocacy world of like really getting better care, teaching people about the disease, teaching them what to look for in specialists and things, but I think they and we maybe have dropped the ball when it comes to the hormone side of things, because they just take out your ovaries and it's like good luck, good luck, hope you don't feel terrible and if you do, we're not going to help you, right.

Speaker 1:
24:30

And it's awful and it's awful and it's also so to put things in perspective. When you're hypermobile and then you add the lack of hormones to that, it creates a lot of issues within your joints, because estrogen, well, and testosterone really help with joint health and help with bone health and muscle health. And when you're hypermobile, muscle is key because your joints themselves have a hard time creating that stability. You need muscle Right, and if you can't build muscle because of a lack of testosterone, you're in a world of hurt. And boy did I feel that.

Speaker 1:
25:06

And I think what's interesting is like after my hysterectomy and not having that testosterone I actually think did me a lot of disservice. Like it, it really set me back in my overall quality of life. I do think had I started earlier, I probably wouldn't be facing some of the issues that I have. I wish I would have known, but again, there's a lack of talking about it until probably the last couple of years. I would say I heard about estrogen, right, I mean, I got a patch right after my surgery, right, but I didn't. I hadn't heard about testosterone until our friend Inga. She was like Alana you need to get testosterone, you need it.

Speaker 1:
25:41

And I was like okay, you know, but how, who's going to prescribe it? And so I had no BGYN prescribe it and but didn't really keep up with the like maintenance of it. So I ended up seeing another hormone specialist. But I feel like it's a constant battle, it's a constant work in progress, and what I didn't really realize is that, although I don't have the endo pain, so to speak, I have other pain that's a result of other conditions or other chronic illnesses. I wish that I would have had more of a realistic expectation.

Speaker 2:
26:14

Yeah, I agree with you on that. I kind of thought, I mean, I was back at work within two weeks of my excision and my hysterectomy. I was back, I worked in an office and I, you know, was able to kind of make my own hours and work when I needed to. But I really wish I would. Somebody would have been like hey, you don't need to do this right, you need to take six weeks off, you need to rest. You know, they said, oh, it can take six months to feel better. And it really it took me years and I think it took you years because you have to battle all of the. You know you, with the endometriosis and excision surgery and the hysterectomy, you put out the five alarm fire, you know, I mean, and it was raging and it was, but there's still some hotspots, there's still some spots that are, you know, smoldering, that are either from the original fire or from other fires that started, that just weren't addressed because the endometriosis took priority, because it's so debilitating.

Speaker 1:
27:04

Right yeah, and there were so many things that I didn't realize were a correlation with endometriosis Bowel movements. I had no idea.

Speaker 2:
27:12

Oh, me either, I would. It's always everybody's like period poops and I'm like, oh, this is normal, Right, it's normal for me to feel terrible. No, no not normal. Constant UTIs with negative test results, right, and you just get the wipe from front to back, right? Okay, great, I'm pretty sure I know how to do this. I've been a vagina owner my whole life and I am fairly certain that I know how to wipe properly to prevent utis, but I will take your advice okay, that's.

Speaker 1:
27:39

I mean, that's better advice than what some give, right?

Speaker 2:
27:42

no, it is take what you can get. It is, I mean, at least you gave me something Right.

Speaker 1:
27:47

But it's interesting because I think again, the kidney stuff. There's some correlation there to how I felt and all these other things that I look back at and think, hmm, I'm now seeing this in my 10-year-old and so I had no idea of the genetic component to it prior to this, and so once I figured that all out, it was like now this is another thing that I have to be aware of for my girls, yep, and I wish I would have known that. Not that it would have changed anything, I would have still had my kids. I had a lot of misunderstood fears and then, on top of that, I think the thing I am grateful for is that I learned how to advocate for myself better in retrospect.

Speaker 1:
28:32

You can't live in the past trauma. You kind of have to learn to. I hate to say this, but you have to learn how to manage and deal with some of that trauma or it's consuming. Yes, absolutely. And so, even though there were times that my doctor I genuinely think she cared, I genuinely think she wanted to do the best by me, but again it was her lack of knowledge and understanding, and then it created this false hope within me Every time I went to go see her and a new procedure or a new drug or a new thought process. I had hope. And then all of a sudden, I started getting to a point where I lost that hope and that's what kind of led me into this excision arena, cause I was like this is just my lot in life. I'm going to have to have surgery every two years, and you don't realize how damaging surgery is, especially with endometriosis Right, and especially with somebody that's not an expert Right.

Speaker 2:
29:21

And then you add the EDS piece on top of this Right, which makes healing more difficult. It makes everything more difficult, way more difficult.

Speaker 1:
29:28

And so I think, just looking back on that and realizing like I learned a lot and I'm going to use that to help advocate for my daughters but continue advocating for myself, I'm grateful for that. Like I was having kidney issues, my labs were off, so we were trying to figure all this out with my labs, and so I had to go see a urologist and this is not that long ago and remember I went in and she completely dismissed me.

Speaker 2:
29:57

So common too.

Speaker 1:
29:58

Before I would have been like well, that's just how it goes. Like she literally told me you probably don't have a kidney stone. Yeah, she didn't look at me. She didn't even look up at me Hardly. She didn't shake my hand, she didn't anything. She didn't even come close to me. She didn't acknowledge my concerns. She didn't ask if I had questions. She pretty much said, well, we're going to do this scan and it's probably like, like, but at the same time it was that was so invalidating Then it made me feel like I'm crazy. So then, when I do see a provider who legitimately thinks that I need help with something and that feels like they can, I'm like but I'm not worth your time.

Speaker 2:
30:37

Right, I'm just wasting your time. I'm just wasting your time. Why are you here, you? You have a kidney stone. I'm not going to help you with that. You might have a kidney stone. You have a kidney stone.

Speaker 1:
30:44

I'm not going to help you with that you might have a kidney stone, maybe not, I don't even really know. Yeah, exactly, but in that I learned that I don't have to settle for her and I ended up calling back and saying I want my money back because Kimather Redman actually gave me this advice. Love Kimather, I love Kimather. She said they didn't perform a service that you were charged for. Ask for your money back, yeah.

Speaker 2:
31:07

And I was like okay, done, Did they give it to?

Speaker 1:
31:08

you.

Speaker 1:
31:08

No, it was worth a shot, but I was able to then find myself a provider who was able to help me, who was willing to be part of a team for me, and I didn't realize how important it was to have a multidisciplinary team and a team that'll work together, because these conditions a provider may know their specialty, but when you have multiple things going on at once, it's important to have your providers talk to one another, because they may not put the full picture together, but if you have a complete picture, there's going to take it's going to take one doctor to look at it and say this makes me think that you might have this right, or this makes me think that this might help you here.

Speaker 1:
31:48

The other thing that I think I want to tell people, though, is, when you have a chronically ill body, like you, have multiple different things going on. The thing that I'm learning is that I can't expect the same of me that people without these conditions can do. So, for instance, we often say I have so much on my plate I can't do the same of me that people without these conditions can do.

Speaker 1:
32:05

So for instance we often say I have so much on my plate, I can't do all this. The correlation I make with this is that a person that doesn't have a chronic illness maybe has like a 10-inch dinner plate. Right, right, you go to a buffet, you get your 10-inch dinner plate, you fill it with all the things and you still you're able to enjoy it. You all the things and you still you're able to enjoy it. You're able to fill yourself up with it. A chronically ill person really only has a six inch dinner plate and if you try to shove everything from a 10 inch dinner plate onto a six inch dinner plate, it's going to overflow, yeah, and it's going to get contaminated and the food's going to touch.

Speaker 2:
32:41

It's going to touch.

Speaker 1:
32:43

And you're not going to be able to like, savor what's on your plate. You're not going to be able to enjoy it in its purest form, right, and it's not going to be nutritious in that standpoint because it's going to create more anxiety. It's going to. You know, all those things for us ADHD or autism spectrum people the more we try to pack on, the less fulfilling it is yeah from people the more we try to pack on, the less fulfilling it is yeah. And so the thing that I've learned is that my chronically ill plate needs to be managed, and so I have to choose what I want to put on. Thanks for joining us today in a part one of this two part series when Chelsea takes over endo battery. Come back next week as we continue to unravel the things that we have learned in our journeys. Until next time, continue advocating for you and for those you love.