When you're going through things, these sometimes are difficult to hear. So I had to keep telling myself, even when I didn't believe them, even when I thought I was broken or lazy or crazy, and I knew my body's protecting me, but I didn't care. That's not what I wanted. If you haven't been told this yet, or if you know this and you're still in a battle with it, I'm here just to reiterate these things. You are not broken, you are not lazy, you are not crazy, and your body, it is protecting you, and she's doing her best.
________________
PODCAST INTRO:
Hey, beautiful soul, and welcome to Dear body, I'm Listening. The podcast for women living with chronic pain, mysterious symptoms and invisible illness. I am your host, Donna Piper, movement therapist, Pilates instructor and chronic illness navigator. The space is for the ones who've tried everything, felt dismissed and are still searching for answers. If you've ever felt like your body's speaking a language no one else understands, you are not crazy, and you are not alone. Here we go beyond diagnosis and let you know what diagnosis to try to seek. We talk about swelling, fatigue, brain fog, body shame, nothing is off the table. We explore healing through somatic spirituality, movement and truth telling, because healing isn't linear, and either are we.
________________
Donna Piper: Hey, beautiful soul, and welcome to Dear Body, I'm Listening. I'm Donna, movement therapist, Pilates instructor, chronic illness navigator, and your friend on this messy, magical, healing journey. This podcast, it's something I've needed for years, and I think maybe you have too. Because if you've ever felt swollen, exhausted and plain, dismissed by doctors or just unsure why your body feels like it's falling apart, you're not alone. This space is for women who have been silently suffering, who've Googled their symptoms more than they've talked about them, and who've been told everything looks normal when nothing feels normal. We're not doing surface level healing here. We're going underneath it all with the truth, the tears, laughter and tools that actually help.
So let's get into my story so you know a little bit about me. I was 52, and three quarters years old when I finally got my diagnosis. And for decades, I did everything in my power to heal, to have a healthy body. I ate exceptionally well. I moved constantly. I was a dancer. I taught Pilates. I hiked. I was a movement therapist. I ran marathons, and I did very deep spiritual work. But my body was kind of always changing. I always had thick thighs. I wasn't really quite sure what that was about. I was always like, maybe I'll do more. But then in 2019 after I got pneumonia, it was May 1 of 2019. I remember it very well, I had a high fever. I never had any lung issues before, like I had some bloating, which we'll talk about, and I'm hyper mobile. I had all these other things, chronic migraines, ever since I was younger. I had my weight distributed in my thighs, but I never had respiratory issues. But after that diagnosis, after that pneumonia, things started to unravel for me. And that pneumonia, I was on five rounds of antibiotics. I don't know why I wasn't hospitalized, but after all of that, they told me it was viral. And even though I was exhausted and I had maybe one hour in me to maybe take a shower, they told me to just rest. I didn't really think that was sustainable, but I went back to everything I knew, eating really healthy, eating avocado, healthy fats, and no sugar, no grains, all of these things, right? But I started to get worse and worse.
And about that time, the pandemic started happening. So to have boats where I feel a little bit better, but then my gut issues got debilitating as well. And then I started to gain a lot of weight in a short amount of time. I went from a size 4, 6, to a size 10, 12, which is significant. As my body got heavier, my brain fog deepened, my fatigue worsened, everything got harder, and I just couldn't figure out what was going on. I was eating everything right. I was trying to exercise as best I could when I had energy, and still nothing. I was turning the needle back, making me feel better. I have no kids, so it wasn't like I had just given birth, or something like that. And technically, I'm not in perimenopause. I wasn't burnt out from parenting or having a job I didn't like, and I've always made health a priority for my whole life. But still, my body was screaming, and nothing I tried had a lasting impact. So eventually, I found Dr. Eicher after looking at lymphatic work online, Dr. Perry Nickelstonhis, Big 6, if you're familiar with it. If not, we'll talk about it later. But he suggested a book, a diet book about food for lymphatics, and one of the authors was Dr. Emily Iker.
I looked her up. I got desperate. I was like, no one's giving me answers. I'm not feeling better. I'm doing everything I quote, unquote, should. So finally when I looked up the authors of this book, I'm like, I'm just gonna say that if they're close to me or if they're a state away, I'll travel. And she happened to be in Santa Monica, and I lived on the west side. So she was like 10 minutes from me. So when I went to see her, she's an lymphatic specialist. She's a pioneer in the field. She also works with lipedema, and she's the one that diagnosed me. She said that it was a bummer. I had the bummer one that really is a harder lymphatic to treat, Lipedema. She also diagnosed me with mast cell activation, that's why all this good food that I was eating was poisoning me. Because all this great food I was eating has lots of histamines in it, and she confirmed that I was hyper mobile and most likely had some sort of POTS. Eventually, I also got another diagnosis just six months ago that I have ME Chronic Fatigue Syndrome from Dr. Perrin. He happened to be in Los Angeles at the time, so that's another one that I have. And all of those things, what they have in common is lots of pain, brain fog. Unlike random rashes, fevers, not feeling good all of a sudden, you have lots of energy one day. And the next day, you're crushed, and then the weight gain and pain from the lipedema.
So we'll get all into all of those things, break all of that stuff down, and many other things that are in the unseen illness world. And even though I'm a Movement Therapist and deeply spiritual, and I know how to listen to my body, I was like, I knew something was wrong, and I wasn't getting the answers. I still couldn't pull out all of my tricks, all my tools, and I still couldn't connect with something to try to start to heal me. I definitely have made my body a bottle, and hated my body at times. I had to grieve. I felt a lot of shame about not being able to fix it because I have education, and I have done tons of research ever since I got diagnosed, so I kind of see where the common threads are. But I can't find my own triggers. And something that I have said to my clients forever is that, your body doesn't need to be fixed. You don't need to be fixed. You're not broken. But boy, did I feel broken? Did I feel like a failure of all of these years of doing my best, of doing all the things, and still I end up 54 years old, now heavier than I've ever been, and I can't diet and exercise my way into it.
I know a lot of people out there, if you have lipedema, say, oh, you can do these things. But for me, I started exercising. I started with great food. I started my whole last 40 years of my adult life dancing and moving so it's not like I was doing horrible things to my body. And then woke up one day and like, where am I at? I actually was doing everything. All these conservative treatments, and just not the compression host. I had a red light therapy power plate rebounding 20 years ago, like all of the things. So for me, conservative treatment isn't really going to help heal and reduce the nodules and the fat that I have in my legs. So there is a lot of shame around there. And I did go about like this woe is me pity party, which I think you need to do. I really think that all of those feelings are valid. It sucks to have these things, especially when no one really understands you. And every doctor, every person or you say X, Y and Z about your thing, and then they look at you and try to be helpful, friends, family doctors with old information. That's like, dude, it's not helping you.
But that's not the thing. I know what it is. That's not these normal ways to treat so as a side note. I know my lighting is going. I don't know what to do about it, so why am I here? What was my turning point? Why did I end up with this podcast? I want it to be a love letter and an apology to myself for putting myself in a little box. I had to figure it out. I was a horrible person, and a piece of S-H-I-T because I haven't been able to figure out how to heal myself and take it just a sacred pause to say that I am here and I hear you, and I'm saying that to myself and to you because my healing is never going to start with a new supplement. And it's really come to look at my chronic fatigue . How can I slow down? How can I do less? And we'll talk about this visible band.
But once, I really just started like, okay, I'm not going to try to force and figure it out. I need to sit back and just be like, you know what? I have zero energy today, and be good with it and not shame myself, not push myself, not berate myself. Be like, okay, this is what I need today. What do I need to do? Look at rest as something as not because I'm lazy or I'm sick. But because if I want to get better, I need to rest to have more presence over this other than this innate thing in me that wants to figure everything out and just start to trust like, okay, what comes into my path. Trust my body to have enough time to redo all these things. All of these healthy foods that I was putting in my body for the last 40 years were poisoning me, giving me too much histamine, doing too much, so it's going to take more than changing my diet overnight to make me feel better. Even though that's what I wanted it to be, it's not the reality of it. So I'm saying this again to me, and I do believe this. When you're going through things, these sometimes are difficult to hear. So I had to keep telling myself, even when I didn't believe them, even when I thought I was broken, or lazy, or crazy, and I knew my body's protecting me, but I didn't care. That's not what I wanted.
If you haven't been told this yet, or if you know this and you're still in a battle with it, I'm here just to reiterate these things. You are not broken, you are not lazy, you are not crazy. Your body is protecting you, and she's doing her best. So what this podcast is offering is not going to be polished. It's going to be more real and raw. I may say some bad language words, and it's going to be full of truth. Because even with everything that I've learned, everything I know, everything I thought I knew, it still didn't heal me. It's very confusing, and there's a lot of information. And if you have one of these things, it's a lot of it. Most of us have multiple core mobilities, a lot of different things that go together, and a lot of the symptoms are the same. But sometimes, it comes from the lipedema. Sometimes, they'll come from hypermobility. And figuring that out is such a cluster. And when you're tired and you don't feel like that, your brain doesn't work. It's hard to organize all this stuff.
So here, we're going to talk about swelling and fatigue, chronic illness, lipedema, mast cell activation syndrome, and the derivatives M,E/Chronic CFS, which is Chronic Fatigue Syndrome. I don't know how to pronounce the ME part, but I will get better at that. POTS, EDS, and there's many other chronic fatigue sort of things or autoimmune that are in here too. But these are some of the major ones that have a lot of overlap. We're going to talk about brain fog and body shame, also rest movement, somatic tools, how to really work out the best way to actually make you stronger and better? That might take a big gap and like, what movement to do when you can't move? And also some sacred support for you that I think whatever your belief is, if there's something more that it really is, a nice, invisible support around you. And then we're also going to talk about gadget hacks, deep talks, and just having a sisterhood or community, or just feeling that you're not alone.
I'm gonna do some solo stories like now, some honest interviews, some feel good flows just to kind of give you some movement stuff that I have found that's helpful. And most of all, permission to not have it all figured out. So if you have any sort of questions that you like, if you want to leave in my website or below this in any of the comments, I haven't set it up yet, but I will, but a number so you can drop me a question. Or DM me on my instagram, which is lipedema_donna, I'll leave that in the show notes below.
Thank you for listening. This is going to expand and grow. You're going to learn a lot of information, and also just having someone that knows how you're feeling along this journey, you'll have a friend in me. I invite you to join me on my next episode. What I wish I knew at 15 about lipedema, because probably would have changed everything for me. So I am so glad you're here, and I will see you over in the next podcast.
________________
PODCAST OUTRO: If this episode made you feel even a little more seen, brought you a dose of clarity or pointed you toward your next step, please rate, review and share it with someone who's been quietly carrying the same questions. You can find some more resources, blog posts and healing tools over at donnapiper.com. Don't forget to subscribe so you never miss an episode. Until next time, Dear Body, I'm listening, and I am so glad you're here.
