PODCAST INTRO: Hey, beautiful soul, and welcome to Dear Body, I'm Listening. The podcast for women navigating chronic symptoms, invisible illness, and that daily dance between hope and exhaustion. If you've ever been told it's all in your head, well, this podcast is for you because your body is not lying and neither are you.
Hi, I'm Donna Piper, Movement Therapist, Pilates Instructor and Chronic Illness Navigator. After years of being dismissed, misdiagnosed and doing everything, quote, unquote right, but still getting sicker, I created this space to tell our truth. Here we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We're going to explore limp, breath movement, self trust, latest research books, relationships, basically everything all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
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Hi everyone, and welcome back. My name is Donna, and we are getting ready to get right into our real talk recap. So if at 15 I had known what I know now, I think I would have had a huge change in perspective about how I looked at my body and my whole life. At 15, I thought I just had bigger thighs. I danced, I hiked, I did all types of sports. I swam every day, the regular kids stuff and into teen stuff. I was still very active. And even though I moved every day, I still had thicker thighs. And I also ate really clean food. We'd have the occasional fast food.
But a few years before I started my period, I became a vegetarian, and I never really ate a lot of junk food. Junk food wasn't really around our house. There wasn't a lot of sugar and stuff. My mom would eat very sugary foods, and she has a totally different body type for me. We're going to talk about that later episodes, but I wasn't that girl. Especially when I went into college, I was even healthier. I didn't have soda, I didn't have coffee, I didn't have fast food. I ate really healthy. And yet, my clothes never really looked like my friends even though it was a size 02 or 4 at the time. But my legs were always thicker, so I was always more concentrated on my lower body. Why wasn't I as thin as my friends? And why wasn't it then based on everything I did? And by the time I got to college and I was dancing for 8, 9 hours a day, it was still the same. I was one of the stronger technical dancers in my program, and I still felt very self conscious about my weight. That was made up in my head.
One of my ballet teachers came up to me and she touched the top of my thighs, and she says, ballerinas don't have thighs like that. And I know that she was trying to be motivating, because I think she thought like everyone else did. I just had an eating problem. I ate too much, or I wasn't disciplined enough. But that was not the case at all, and that just reinforced my self consciousness about my thighs. So anywhere I looked, I thought I was really judged about how large my legs were. And even though I wanted to believe nothing was wrong with me, I always was thinking that there was something defective like, what am I not doing? What am I doing wrong? What I wasn't trying hard enough to do in order to get my weight proportional?
And if I had known that lipedema was a thing, like this is just genetics, this is how you're going to be, but it's not laziness, it's not a lack of trying, it's not a certain food, that this might happen for whatever reason, and they don't even really know why it grows. They think it has something to do with hormones and stress. But basically, my system, because I have all these other things that just don't behave like other systems do, and I probably know that like I had this thing, I would have much been much more gentle on myself, this misunderstanding of my body and thinking that. It was more in my control than it really has messed with me for decades, and it still messes with me till this day. And I don't think I'm the only one.
So now, we're gonna get into the segment that I like to call, let's get lymphatic. So here we're gonna really just break down what Lymphoedema is. And again, this is something my 15 year old would have loved to know. Usually right around puberty when you get your menstruation cycle, your legs start gaining, and they're a little thicker. The area typically grows in between the top of the thighs and knees, and it might look more column shaped. Even though I was fit, I had some definition on the side. I had a larger bottom and bigger hips, saddle bags, even much more. And as I got older, that got more pronounced. I had more tenderness in my body. I would bruise easily, and I would work out or do something and bruise. And I thought, oh, that was kind of weird. I never really thought of it. And then also having cold hands and feet, a lower body that looks different than the upper body.
Now, with the weight that I've gained in stage two of lipedema that I'm in, I have weight around my waist, but that wasn't the case for me before, for years and years up until probably like three or four years ago. I did carry weight in my belly area. It was usually really flat. And the other odd thing that comes with lipedema is there's no appetite. You have low hunger cues, especially if mast cell activation syndromes are involved. I could go days that I don't think about food. I know some people think about food and plan about food, and that's a whole different thing. I forget to eat, or I'm not really hungry. I want to eat. I want to have an appetite, but food is unappealing. Then you eventually get some pain or heaviness in the legs, either after some movement. So I remember dancing for hours and hours, so I have a lot of stamina. But at the other end, my legs would get really tired. So doing things to reverse that blood flow was very beneficial. And at the time, I just thought because I was so active. I didn't realize there was a circulation lymphatic thing and connective tissue disorder, as well as histamine and all the other things we're going to talk about later, and other things that were a part of it.
I've had migraines my whole life. I was at 7, and anytime that I went to a doctor to be like, yeah, what's going on with me? I have all this pain, all X, Y, Z, of all these things. There's nothing wrong with you. You're fine. Don't worry about it. And then as I got older and I got into this different stage of lipedema, for about 15 years, I was pretty much told, you're probably really not eating as clean as you think you are. You just need to try harder. Eat less, exercise more, that whole thing. And if someone ever says that to me these days, I just kind of want to scratch your eyes out. No, you're not listening. That is not what it is, and that is not what lipedema is. It has nothing to do with calories in, calories out.
Yes, if you're eating a lot of food that gives calories, you can have an obesity or a weight gain component to it. But the actual place in your body where there's stubborn, quote unquote fat is, if you have lipedema, it's not going to go away on its own. And there's many different things out there with conservative treatment or not. And for me, my journey, I did all the healthy things my whole life, and that still happens. So I think there is a way you have to treat it 100%. However, it's not just as simple for most people as changing diet exercise. God loves them. The women out there that have just done a few tweaks with food or exercise and found their trigger, and they're able to do that? Awesome. I want that case for everyone. That just doesn't happen to be me or a lot of people that I'm in, women that I'm meeting.
And so what do they know about lymphedema? Well, they know that it's hormonally triggered. They know that it's genetically influenced, and there's a lymphatic component so there's a little bit of a debate. I've heard from a lot of different doctors, especially surgeons, because I'm looking for a surgeon to do the surgery. Talk about stages. And there is a paper that was published. I think Karen Hertz published it. I'm not 100% sure, so don't quote me on that. But there might be four stages. But basically, there's a lymphatic component to an lymphoedema component. To anyone that has lipedema, from my understanding, lymphedema and lymphoedema are like cousins. So when you have the disease fat, if you have someone with lipedema, it's also connective to tissue disorder, and your weight gain is usually very symmetrical, and there it comes with a lot of pain. And it's not just pain in the legs and the lower body. It could be pain throughout the body as well, and it changes the way the larger your legs get. It changes the curve of your legs, so it changes your gait, so there's more stress on your joints. That's heavier weight in the bottom, so your ankles, knees, hips and everything are stressed more. So then you could start to have joint issues.
I just danced forever. I never had any foot pain at all. I have really flexible feet. And because of the weight gain, the bone spurs that I've had there for probably decades now were bothering me, and it started to hurt because of that extra weight. And my foot wasn't striking in the same place it normally was, because my legs are expanding. So my structure is changing. So those are just some things to kind of look out for with. If it is lymphedema or lipedema. Lymphedema is always a component, and the stages are usually one, two and three. The fourth stage that they have is light lymphoedema. It's hard to say it's both, but there's always a component. For every doctor I talked to or heard speak about, how did you surgery, and what it is, and the fluid component, that they're always together.
So the other thing about lymphedema, lipedema or obesity. What are the differences? I kind of talked about this already, but I'll do a short recap. Lipedema is a fat and connective tissue disorder, typically symmetrical and painful. Lymphedema is fluid buildup, usually swelling in one limb due to a damaged lymphatic pathway. And obesity is more generalized and typically can be reduced with lifestyle changes. So typically, when you have lipedema, you can lose weight everywhere else where you don't have the fat lipedema nodules. And wherever they are, that diseased fat tissue, it's typically not going to go away without a surgical intervention fully. You might have some good results with all the conservative treatments that we'll talk about in future podcasts, but that's just kind of the general genetic makeup of the lymphedema person.
They don't know why it triggers it, and it's different times of your life. You could go into different stages. Maybe you'll always be stage one. Or maybe an early part of your life, you get into stage three. I was stage one pretty much up until just a couple years ago, and then I became stage two. So it really depends. Anytime in life, it can grow. And that's the thing they don't really know. What is the trigger to make you accumulate volume in your legs? So back to, why would knowing this sooner changed everything for me? Well, maybe just knowing this now, you could start blaming yourself. You could start thinking that you're not doing enough. Because even though I was very strict, very well, exercised and did all these things, I wasn't getting the results. I always have this negative self-talk like, oh, my gosh, maybe I should do more. Why isn't this working?
I probably would have not spent decades doing every cleanse imaginable. You name it, I've tried it. Every weight loss, you name it, I've tried it. And it was really more about, I wanted to be healthy. If I have this weight, I'm not healthy. So that was my drive. And then I always felt judged. Like, oh, my gosh, people are gonna see like, I really just thought that people thought I was not a good person myself. There was something wrong with me because I was heavy. So all of these negative thoughts that I feel about myself were rooted in the fact that my legs were so big. So my case is very complicated as well. Because I have mast cell activation syndrome, which has a lot to do with food and environment. And finding those triggers are painful. And it's a pain in the butt. It's not easy.
I have hypermobility, which contributes to some of the same symptomology, same with chronic fatigue syndrome and POTS. And who knows what else there could be that is also a root cause for all of this, but they all connect, and by learning some of this information earlier, I would have not been down all these rabbit holes that I have been, I probably would have been able to find something that actually was going to help me. And it would have definitely saved me years of confusion and shame.
So now we're going to go into one of my favorite segments. What we call, Ask Donna. I got a question from one of my friends, how do you deal with the grief of being misdiagnosed for so long? And that was really, really tough. I think in the process of all of the five stages of grief, I had to mourn all the time that I lost and really go back with a lot less anger about all of my situation and how I feel, and I want to let you know that it's okay to mourn, it's okay to be angry, and it's okay to still be figuring it out,. It's expensive to have these diagnoses because the specialists that you find, they want to be paid out of pocket. And it's not like 100 bucks, not even 70 bucks. It's more like 2, 3, 4, $500, $600. You don't know how many consultations there are. And that's not with all the testing and all the other stuff. And the kicker is there's no clear cut diagnosis or a pathway like, do these things and you'll improve. Try these things. Everyone's different. This is what most people try. This is how it's helpful, but it may not be for you. That's really hard when you spend so much money.
You don't have a lot of time. I've had to cut back on my work. I used to work full time a ton, and then I went to not working at all, and then I started working again. And then I've had to cut back. I've had some complications with chronic fatigue syndrome and my hyper ability with the mast cell and the lymphedema, so I need to work in order to pay just for my medical bills. And it's hard to find people that are good and in my area. And when you have so much brain fog and you're exhausted, it's really a tough journey. So my kind of wisdom, let's say I use that term loosely because I don't know how far I'm into this journey to be much more wise than you. But stick with it. Take it easy and mourn. Give yourself the time that you need to actually deal with the anger and the upset feelings. All of the doctors are saying, not a big deal, or I just need to do this one thing more. It was more about food and exercise.
If I would have started this podcast a year and a half ago, which I wanted to, I probably would have been way angrier about all this. I'm being a little bit more gentle and seeing like, okay, I wanted the fantasy of, no, yeah. I have the diagnosis, but it's really not gonna affect me. I'm gonna figure out a way to overcome it. I'm gonna figure out a way to still reduce my weight, to reduce my pain, to be able to walk, to change, to bring my structure back. I'm not having all this pain and all this problems walking and all this stuff. I have to come to terms with the reality that it is that that's not true for me as much as I want it to be true for me. It's not true for me, and I really have to mourn that as well. So forgiving myself and really accepting every day is that's as a practice, and to really make it a part of the fabric of my journey now. And sometimes I just don't feel like being thankful, or grateful, or accepting, or forgiving. When I don't feel good and I wake up with a headache like I had today, I don't feel that excited about being, okay, I forgive all the people that didn't help me and all of that stuff. Because it's not the truth.
One of the things that struck me back in February, or at the end of January when I met with Dr. (inaudible), I was going to him for lymphatic work because my body was growing again. I heard really good things about him, and I had no idea that he was a specialist in chronic fatigue syndrome. I didn't read his books. Someone told me he was going to be in LA, I went and we had to do this questionnaire, and all the all these things. Out of living like 1 to 10, one is bedridden on your deathbed, and 10 is fully actualized living without any complications, I scored a three, and he said something very profound to me. He said, you are functioning as a three, but you're presenting yourself like a seven. And really, the paradox of living with these kind of illnesses is that I don't always look sick. I feel horrible, and I'm in a lot of pain. I can't really function, but I don't look like people think they would look. Or if I smile or something, people just assume like, oh, I'm fine. But inside I'm crumbling. So if that is you as well, I see and hear you. You're not alone. It's a real thing to be giving 100% and really only running on like 30% of fuel.
And the other thing that's helped me deal with grief is trying to find connection and share my story with friends. I don't always like to, because I don't want to go into it all, and a lot of times I just don't understand. When you tell someone about your weight and you're like, you have this bad disease. They kind of look at you like, oh, well, you could eat something different and lose weight. Or if you talk to them about mass cells and all the foods, there's such a long list of foods that give you histamine, they'll kind of look at you still like it doesn't compute to them. It is a big thing to kind of go, huh. Even as the person that has it going on and understands how food and all these things feel in my body, but it's like, huh? My body's not cooperating. All this research has done is all the healthy foods and all this healthy food is, really, is what is like tearing me apart. So to try to step out of myself and not be so isolated. Because when I feel bad, all I want to do is just really shut down.
So if you feel like that too, I do want you to honor your rest and still try to do what you can to reach out. And then now, we're going to go into the feel good flow segment, which is one of my favorite things since I am a Pilates Instructor. I was a dance movement therapist. I'm very body based as far as I really like to move and do things. So one of the things that I found when you can move, you're feeling like you just need a little bit of support. It's gentle. And this is called just a wall with a pillow. And one of the things that you could do is just simply stand with your back against the wall and then slide down to your like in a seated position so your whole spine is supported, almost like you're in a chair. So go down as low as you can, your feet, your knees and your hips will all be in a straight line. So your knees will be right over your toes, and your legs aren't going to be that far apart, and just gently squeeze like a pillow. Or if you have a yoga block or something in between your inner thighs, you're just going to squeeze that because a lot of your lymph so your lymph flows from your feet back up. So the limp part flows up, and then from your head down into this clavicle area, into your heart.
So one thing you could do is when you sit there on the wall and you contract and hold for 2030, seconds while breathing slowly, that helps, and then you stand back up, that helps to get that pump going in your legs, squeezing the back of the knees, and in the hips, where there's a lot of lips, and then when you come up, just shake it out. You could do this few times, or whenever you need a little extra kind of oomph. I like to do it with Dr. Perry Nickelston Big 6 lymphatic reset. You can look it up online, YouTube. I'll have a link in the show notes to one of his short videos about it. But you stimulate your big six lymph points. There's more of them, the collarbone, behind your ears and your neck, armpits, your abdomen, you're growing behind your knees. And then just do some like toe taps and raises, and then some arm circles to help. And it's a good way to prep your body before, and then also doing this gentle wall sit will help, kind of pull everything in you, and then release to get that lymphatic going.
So thanks for tuning in, and I will see you next time.
On Dear Body, I'm Listening, I'm so glad you're here. If this episode made you feel even more seen, brought you clarity or reminded you that you're not alone, please take a moment to rate, review and send it to someone who needs that same reminder. You can find more tools, blog posts and support over at donnapiper.com. And hey, don't forget to subscribe so you never miss an episode. Got a question for me every month. I do a listener coaching episode, and I'd love to hear from you. Send your questions, stories or flare up confessions to [email protected], and you just might hear your answer on the show. Until next time, Dear Body, I'm Listening. I am so glad that you are here.
