Life Conversations with a Twist
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Life Conversations with a Twist
Lipedema Life: Living Boldly with Invisible Illness Despite Medical Roadblocks with Donna Piper
"Really listen to yourself. You know more about your body and health, and if you really think that the answers you're getting from your providers are not in alignment with what you know, continue to dig." —Donna Piper
Some days, it feels like your body is working against you—and no one else gets it. You try every diet, every doctor, and still get told it’s all in your head. The truth is, invisible pain is real, and you deserve to be heard, not dismissed.
After a lifetime of health and wellness work, Donna Piper was finally diagnosed with lipedema and other chronic conditions, turning her pain into a mission to educate and support others. Now, as a coach and podcast host, Donna brings a fresh and honest perspective to living with—and advocating for—chronic illness. Donna’s story is proof that you can spend years searching for help, only to find the real answers in unexpected places.
Ready for a conversation that actually gets what you’re going through? Listen in for honest talk about lipedema, chronic pain, body image struggles, food triggers, medical gaslighting, and how to find hope and help when the system lets you down.
Connect with Heather:
Episode Highlights:
01:44 What is Lipedema?
05:24 A Lifetime of Misdiagnosis
11:47 Body Image and Self-Blame
16:12 How to Advocate for Yourself
20:18 Medical System Challenges
24:00 Diet, Food Triggers, and Mast Cell Issues
30:19 Living with Multiple Conditions
39:01 Invisible Illness and Social Stigma
41:47 Body Image and Acceptance
49:52 Listen to Your Body
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Connect with Donna:
Donna Piper is a Relationship Coach, Trauma Expert, and Akashic Records Healer dedicated to empowering successful single women to transform their love lives and attract fulfilling partnerships without sacrificing their professional ambitions.
With a holistic approach blending therapeutic coaching, trauma-informed techniques, and Akashic Records wisdom, she guides clients to release limiting beliefs, heal emotional blocks, and cultivate unshakable self-trust. Her work focuses on aligning mind, body, and spirit to create lasting change—helping clients refine communication, deepen self-worth, and build the foundation for healthy, loving relationships.
Donna’s sessions are a safe haven for those ready to break cycles, embrace vulnerability, and design a love life that harmonizes with their thriving careers. For women committed to both personal and professional fulfillment, she offers tailored strategies to unlock their full potential and step into the relationship of their dreams.
Heather Nelson: Welcome everyone to this week's Life Conversation With A Twist. I have Donna Piper on. We actually are connected through our podcast team. We were just chatting about how great a thing to have when you're a podcaster, not having to deal with the editing and stuff. And we have the same team, and they connected us and said, you guys do that talk. And so I'm really excited to have this conversation today. So welcome.
Donna Piper: Thank you. I'm so excited to be here. I love that our team connects people. Because just chatting with you before, I feel like, oh, my gosh, such a fun conversation. You're so awesome, and I appreciate just your perspective of how you're putting things out in the world to have a different glimpse into people's lives, and maybe what the cause or where they're coming from. So it's really great.
Heather Nelson: This is gonna be a great combo for a Friday afternoon. So tell our listeners a little bit about who you are? What do you do? Where do you live? And then we're just going to dive right in.
Donna Piper: Okay. So my name is Donna Piper. I am living right now in Newport Beach, California. I'm married. I don't have any kids. And I have all these chronic illnesses which I'm sure we will break down. But basically, I have something called lipedema, mast cell activation syndrome, chronic fatigue syndrome. I can't say the first name. It's hard to pronounce, until I go on YouTube and have them pronounce it for me. I also have POTS, and I also have hypermobility EDS. So basically, what that is, is that most of them are linked by connective tissue disorders and lymphatic issues. So chicken and the egg with those, but lipedema especially and how I learned I have all the other ones is when I finally got diagnosed with lipedema, which is a fat disorder. It mainly affects women, and it is now worldwide. They're looking at like one in nine women have it, and are affected by it.
Heather Nelson: So you had this your whole life?
Donna Piper: Yes. It's mainly genetic. They're not totally sure, but there is a genetic component to it. And it comes with not only just the fat and how it looks, it looks more deformed. And I could tell you all of it now or later, whatever you'd like me to do. But as it progresses, there's a lot of pain. And eventually, it could affect your mobility most of the time because of how it changes the shape of your body. A lot of women are either misdiagnosed with obesity. And it's not a lifestyle issue. It's not like you can diet and exercise your way down. It is not affected by those things directly. It's mainly a surgical intervention that you need to have in order. So it's liposuction, basically. But a certain way you do it, there's usually three to five surgeries or more that you have to take out the diseased fat tissue. I've been in the health and wellness industry my whole life. I was a Pilates instructor. I was a dance movement psychotherapist. I was a dancer. I've always been into health nutrition, like what's going on?
I've probably done every cleanse known to man, and every trend. And I was really doing it, but my body wasn't changing. Why were my legs still fat? What is going on? Everyone else is like, oh, I changed. I had two more glasses of water, and I totally feel like a different person. Or I had some flax seeds, and now I'm just down 20 pounds. And I'm like, oh, my gosh, I've been eating clean for decades. I did all the right things, and my weight wasn't changing. I was really focused on that. And then a few years ago, my weight went from like a 2, 4 to a 10, 12. I couldn't have eaten my way into that, but my body changed. Its swollen. It took me about two years to find someone through my regular doctors. It was like, maybe it's blood cancer, maybe it's hormones. No, it's not this and that. And then finally, I found a doctor that is a lymphedema and lipedema specialist in California, and she diagnosed me with lipedema. And then from there, I found out all these other things. I'm like, oh, that's why I was never able to lose weight, because it's not affected by diet or exercise. I could starve myself. But the diseased fat is not necessarily going to reduce.
Heather Nelson: It wasn't something that you were born with, and your parents are like, you have this chronic disease, but it wasn't until recently. It was only a few years ago till you actually figured out what it was, because you weren't able to lose the weight by all the things that you were told to do to lose weight.
Donna Piper: Exactly. So there's different stages and types. But lipedema is like, if you had fat from your hips, it's usually in your thighs. From the hips to the knees, it looks like columns. So it looks like sausages. And when it goes to the lower leg, it's like cuffing. So your feet aren't swollen, or your hands aren't, and then you could see with my arms, this is all lipedema fat.
Heather Nelson: It's the part that we all love so much in our bodies.
Donna Piper: It's like there's muscle underneath. I'm in stage two, so there's different stages. You don't have to be overweight to have lipedema. It's not cellulite. It's more like a granule, because there's fibrosis and disease fat in there. Mine progressed to stage two, and so I have weight saddle bags, hips like pants, don't ever feel right. Jeans are tight in places where they shouldn't be loose. That kind of body style. And it can get worse when you just get more and more volume, but it doesn't look symmetrical ish. But sometimes, you have different areas. But half of my body is way different than my upper half. When I was less weight, my waist and my upper body looked normal, and then my legs were much larger. So it's disproportionate. So it's not like you just eat, and your whole body gets heavy. You'll only get heavy in certain areas.
Heather Nelson: Is this something that's curable?
Donna Piper: Only through surgery. There's conservative treatment, and some people say they've reversed it. So I think mainly, it depends on what treatments you have and how your body responds to it. But for instance, in my case, I've done pretty much everything to reduce my weight. And really, surgery is the only way I'm going to release the diseased fat, mainly because I'm not as vain as I thought I was. I would love to put on pants or have something fit or be cute, but it's really about the pain and the mobility issues, because you're in pain constantly. Your legs really feel like cement, almost. It's hard to lift and move them. Especially as it progresses, then it's hard to walk and move around. And it also because where the fat accumulates between your knees and your thighs. If that's where you have it, then that grows in volume. So then your body, then your feet kind of bow out to the outside, so that affects your gait. So because there's so much volume in between your structure, your legs, your body compensates for that by shifting how it looks, and then it can wear out your knees and ankles. But basically, a lot of women have a hard time standing or getting up and down as it progresses, and that's one of the main reasons why I will be getting surgery in January of 2026.
Heather Nelson: I was going to ask you if you were going to do it. Is there anything that helps with the pain?
Donna Piper: Compression hose, compression wear, and that's a whole thing. Most doctors don't know about this, and my mom has a totally different body type than I do. She has teeny, tiny, little stick legs, and she has a little, tiny belly, mainly because she was pregnant and she was tiny, so it never went down. But everything else about her is like, maybe she's like 110 pounds, like soaking wet. She's always been very tiny. I have had the exact opposite. So my dad was adopted, but it's from his line, because my mom's side looks more like my mom physically. So it is genetic, and it's passed down. But people haven't even really known about this. I think it was discovered in the 20s or 40s, somewhere in there a while ago. But the issues are, oh, I feel tired, I have brain fog, I feel inflamed, I don't feel right, I have pain. And those were just, unfortunately, symptoms like that, that doctors kind of blow off. It's either, oh, you're dramatic. You're actually not doing what you say. You can't eat healthy and look like this. You can't be working out and look like this. Or it's hormones or something else. It's always something that they don't really take seriously.
Germany just passed a law, or they did a study. And now, lipedema is actually recognized as a diagnosis, and the surgery is recognized as an intervention here in the States, depending on your insurance. They don't even have a diagnosis for it. There's not an eye code, those codes that you put in for diagnosis. Lipedema doesn't have its own. It's lymphedema, which is L-Y-M-P-H. when you have cancer or something, people know about the lymph and lymph nodes, and that swelling. that's asymmetrical because of something, maybe surgery or something got damaged, and it's under that code. So most doctors don't know about it. They've never heard about it. And then most patients haven't. And so it's really more about advocacy, and that's really why I started a podcast because I also have other ones that are complicating it. But one in nine women worldwide have it. It's huge. And I know that if I knew about this when I was like 15, 16, 20s, my view of my body would be totally different.
Heather Nelson: I was gonna ask you, how do you view your body now? Obviously, you know this is something that it's not your fault. You've done the work to get rid of it. But now, you know that it's not. How do you feel about your body now?
Donna Piper: It's complicated. I look disgusting. How I viewed myself, why am I so fat? Wanting to be like, maybe if I figure something out, it's still kind of my fault. I must have done something. And for years of knowing what I was doing physically, teaching Pilates, I was running, I was lifting weights, I'm old, I'm 54 so health food stores were like a thing. There was no Whole Foods. You literally go to a store that said health food, it had that weird smell in it, that's where I would shop. I was always trying to do something to make me feel healthy, because I knew my body wasn't responding. But I thought it was because of something I was doing wrong. Literally, we aren't inundated with all these things about, buy all this convenient junk food, but then buy all these supplements to make you look good. But if you just change this one thing, then you'll have this perfect body, and you'll have all this energy. And there's biohacking now. There's so many things, so I really was like, there must be something wrong with me because all of these things that, anecdotally, or even scientifically research has done when I was ingesting them or doing that, it didn't change my body significantly. People probably don't want to think so, and more of this culture of like, why would people do that? But going to the grocery store, feeling like people look in your cart and you just want to scream at them and like, no, it's not a lifestyle thing. I'm not lazy. I have this disorder. I have this thing that is just even new to me. But when you're overweight, you get unconsciously, consciously, whatever. People are like, oh, you're probably doing something to cause that.
When you have a disorder, it seemingly looks like, okay, yeah. It's a lifestyle issue, but you know what you're doing. It also creates a lot of shame for me, irritation, anger, and then wanting to scream. But then also wanting to think, well, maybe I'm not doing something. My doctors think that I've given them a list of how I've exercised, what I eat, and they're still saying that I'm not doing what I think I'm doing. So then you start to gaslight your own self like, oh, maybe I'm not doing it. But so this is really the body that I have. Not fit normal sort of connective tissue, collagen, making bodies like my body. And the women that have this kind of body and what I have genetically, they're just two different blueprints. Those things definitely work for people that have normal collagen making and don't have connective tissue issues. When you do, we're trying to fit how we take care of ourselves in this other model, because there's not a model out there for how to live our lives, and how to benefit from it. And each person is so unique, and it's so under researched and underfunded. So there are a lot more communities now, and there's more people. So that's a good thing about podcasts and social media, and also having these doctors that have been doing these surgeries for the last 20 years. People trying to be like, no, I have this, let's these grassroots things bring it more forward. And then now, anything to bring it all forward so people get the medical care that they need. And also the mental thing of like, I'm not crazy. I didn't make these up. These symptoms are very real. The brain fog, this weird inflammation and this pain, I'm just not making this up. They're symptoms of these other things.
Heather Nelson: So it sounds like you went through this whole process to even find out that you have this disorder. If someone's listening to this, and they are like, oh, this might actually be me. What advice do you have for them to do? Do they go to their regular doctor? Are there specialized doctors that just specialize in this? How do they go about that?
Donna Piper: Well, right now, there's a community that is lymphedema simplified, and there's some teachers and some researchers. They wrote a textbook, and it's coming out at the end of September, and it's going to have a companion that comes with it. So if you suspect that you have it, you could bring it to your doctor. So that's one thing that's not out yet, but it's going to be on Amazon, so it's going to be available. So that's something that I didn't have, and a lot of women didn't have. So at least there's going to be a resource that tells you about the disease and what it is. But for right now, go to your primary care physician, say that you suspect this. Ask if you could be referred to either OT or PT, so Occupational Therapy or your Physical Therapy to see someone about lymphedema and lipedema so they can refer you to one of those things, and they can give you because you would like to have total decongestive treatment. So what that does is once you're in those sorts of clinics, whether it's OT or PT, they can get you in the system and assess you, they touch your legs, they feel your body. They do this to see if you have lipedema, or if it's lymphedema, or if it's something else. So that's a great place, and that will start to get you into your healthcare system. So you can get a compression hose, and you can get maybe a pump, and maybe see other specialists down the road. You can also go to vascular doctors to get checked.
And then when you Google, when I started four years ago looking for different symptoms, none of this popped up. I found my doctor. Her name is Dr. Iker in Santa Monica. I went on, it's called Stop Chasing Pain. His name is Dr. Perry Nickelston, he does a lot of The Big 6. It's lymphatic stuff. There's something going on. I feel stuffed and I'm like, let me learn about this. And one of his 20 resources that he had was nutrition for lymphedema and lipedema. I didn't even read that section of the book. But I looked at the doctors, and I was like, I'm not getting anywhere. Let me just see where they are. Maybe they could do video consults. Maybe they can help me. And Dr. Iker happened to be in Santa Monica, not far from where I was living in LA, and she diagnosed me with the one. She's like, you have the one that's kind of a bummer. That's harder to treat. You need to have surgery. Conservative treatments will help slow the progression. But once you gain this volume, it's really difficult, and usually unlikely that it reduces. But you could stop your progression mostly. They know if there's an estrogen component to it. Because usually, you gain these weights during puberty, menopause and pregnancy. However, in my case, I was told by all of my doctors that because of my age, it's probably menopause, but all of my tests were negative. I still can get pregnant. All my things are in normal ranges. The other thing with lipedema too, when you get blood tests for inflammation, you could feel inflamed. But typically, your inflammation markers seem normal. So it's very tricky. So it's really about you to educate your doctor, But if you ask for specific things like, I'd like to see if I have lymphedema, lipedema due to lymphedema, can you refer me to the PT that would handle that, because I'd like some total decongestive treatment.
Heather Nelson: You hear so many people that are like, we go to our regular doctor and they don't know what to do, especially when it comes to women's health like hormones and all the things. And so I think sometimes, we all are like, well, we're going to go to the doctor, and we know something's wrong with us, and they just run tests, and everything's fine. But we know it's not fine. And so thank you for sharing how they can navigate our lovely medical system. Because I get it. I think these doctors, most of them, go and they learn the basics. But now, all these disorders are coming up, and illnesses, and cancers and things like that might not necessarily have been back years ago when they went to school. So it's just very interesting. I have a question for you, and you probably don't know this, because I think obviously, this disease is very new. And then I was going to bring up the shots. I know there's lots of different brands, but the weight loss shots that everybody's talking about and thinking that they need to do, does that help lipedema? Are you not supposed to take it?
Donna Piper: A lot of US doctors that are surgeons, that are board certified plastic surgeons that do this particular lipedema reduction surgery, because there's a definite way that you need to do it. Just going to your regular cosmetic doctor is not going to help, because you're looking for diseased fat to make sure you remove it when you're getting this reduction. A lot of them have been trying Tirzepatide in a small micro dose with maybe compounding with B6. They've seen that that can help with inflammation and pain. You can have just lipedema, or you can have an obesity component. And a lot of times, women don't know that they have lipedema, because maybe they are overweight, so all the regular fat that responds to weight loss, diet and things like that, will shrink down, even if they have bariatric surgeries. And then part of their body, they'll stop, and it will look more typical with lipedema. Because these areas will look like, okay, maybe I was overweight everywhere. And then now, my legs have a certain columnar look. They look like this, and they won't budge. And that's when they figure out that they have lipedema. So it's both.
And if you have just straight lipedema, classically, they do. I've been trying tirzepatide myself to see if that was going to help with my pain, because I get a lot of pain and swelling, and it's really uncomfortable. I was like, fingers crossed. Any weight loss, awesome. Because I'm going to get surgery. But if there's something that comes along my path that I could do without 100% right, like I would totally do that. I think some of the areas that maybe had some normal fat in there, maybe I lost like two or three pounds total the last six months. But it's more about seeing if I can reduce the inflammation. Because now, they're doing more tests with all of these things, like it helps brain health. It helps cardiovascular health. So over the next several years, more and more companies are supposed to come out with these GLP ones and variations to help other aspects. Right now, there's not one on the market that's totally for lipedema and addresses that one, just the tirzepatide. And you could talk to your doctor about that as well. And typically, it's the micro dosing that helps with the inflammation.
Heather Nelson: Do you have to have a special diet? Are there certain foods that you feel bring on inflammation and pain?
Donna Piper: Yes. So typically, there are women that just can do an anti inflammatory diet, like a Mediterranean diet, something like that. But I was on one of those diets for 20 years, 30 years. I would eat healthy avocado and healthy fats. I haven't had seed oils in decades. I did all of these things, and I found out that one of my things that I have, including lipedema, is mast cell activation syndrome, which is very complex. But basically, your mast cells are your first responders. If you get cut in milliseconds, they go to help, make sure that nothing is going to get passed there to give you an infection. So one of those things is histamine. So histamine actually aids in your immune system. So if you have too much of the immune system, histamine in your some enzymes, you either don't have enough, or you're blocking it somehow, and it's called a DAO enzyme. So in my case, even though I was eating all these healthy foods, or a lot of them were either high histamine, or they released histamine, or they blocked that special DAO. So for decades, I was eating very healthy, and I couldn't understand why I was getting gut pain. I'd go to gut doctors and they're like, oh, it's this or that, or maybe it's your thyroid, or take this supplement, do this cleanse, and it would be temporary relief. But then I would still wake up in abdominal pain, then it got worse. I would eat something, and then no matter what it was, I would look six months pregnant by the end of the day. So there were all of these things that were going on.
So my case is a little more special, because I have all these triggers for food. So what has helped me reduce some of the pain in my stomach is a Keto and more carnivore diet. I was a vegetarian for most of my life, but switched over to just really kind of figure out these autoimmune issues that I have, because it's quite debilitating. You just feel horrible, and it changes day by day. You never know how much energy you're going to have, and what you're going to do. So at some point, I was like, I need to figure this out. So a lot of women have done really well with a keto diet that have lipedema for many reasons, because it has so much protein and fiber to it. It's more sustainable, unless you really love bread. But gluten in general, most of the consensus food, is one of those tricky things. But in general, women with lipedema are advised to stay away from sugar and gluten. And in my case, soy too. But basically refined sugar, gluten, those are kind of the normal things because it has to do with inflammation, so anything that's going to inflame you. We could talk a whole thing about gluten. But of all my sensitivities, I've always had gluten. I show up and nothing else. I'm sensitive to pretty much everything. The only thing that showed up on my tests were those two consistently. Also because when you're in a flare, if I would go and get a blood test if I'm in a flare, then probably a lot of things would show up. But if I'm getting a blood test and not in a flare, then it's not going to show up on a blood test.
Heather Nelson: I can't even imagine the last couple years of your life learning all about, like you said, so many foreign words. And I'm like, I have no idea. Sorry, but I feel like as we are getting older, as women are getting older, I think we are having to be more aware of how we eat, what we eat, our hormones, all of these things. It gets very daunting like, what diet do I do? I'm not supposed to drink, but I love to drink. I love my gluten, but it makes me feel like crap. We have to go through these while men get to eat and drink whatever they want over your suffering.
Donna Piper: It's so complex. When you get older, there are more sensitivities to that, I think, in my case. There's a little bit of younger people getting more diagnosed in their 20s and 30s. But if you've been eating and doing a certain way, and your body hasn't had the support that it needs because you didn't know what to do for decades, you know your body is smart, so it adjusts to everything. Its main goal is to stay alive, right? So it can do so many different things to keep you alive and working. So that means it might have to push things somewhere else, and give energy somewhere else. And eventually, that might turn into inflammation. So this could be going on for years. Your body's like, okay, we're working. We're over time, but she still needs to breathe. Her brain still needs to work. Our blood still needs to pump. What can we shift around as we're under attack? And what are we doing to help this? So those are kind of subtle over time. It's not like you're just hit by something or break an arm. It's little subtle changes, and they don't really pop up into your face like, hey, you need to do something until you have a stomach ache. Or you drink something, and then the next day, you feel like crap. And then that lasts a few more days, you're like, it was just like a half a glass of wine. What's going on? Something just needs a little extra support somewhere, and that's the hard thing. Because if you don't know where it needs support or what to do, then you just think that it could be a million other things. Or sometimes, it's too daunting to even research and figure it out. There's a lot of conflicting information out there.
Heather Nelson: Okay, so you have lipedema, you have MCAS. You also mentioned POTS, and you have chronic fatigue. Talk a little bit about how all of this really affects your day to day.
Donna Piper: So POTS is like blood pressure. It's not really pressure. It's mainly about the fluid in your body. But when you stand up, you could get light headed and have to lay down.
Heather Nelson: All of this stems from the lipedema, like it all caused all these. Or do you think they're all just different?
Donna Piper: Lipedema is definitely hereditary. They all are hypermobility. So you can have hypermobility, you can have a spectrum disorder, or you can have EDS, which is Ellis Down syndrome. Basically, lipedema is a connective tissue disorder. It also gives you the mast cell issue, because your body is like sending out stuff, like you're not making things correctly. And we think there's all this foreign stuff in your body. So POTS is also related to EDS and hyper mast cells. So those kinds of things blend together. Chronic fatigue is something where your system isn't working well. My lymph system wasn't working well, and my brain and my body aren't talking anymore, like my central nervous system. They just did a study in Edinburgh that came up last month that really has proven that chronic fatigue syndrome is actually a disorder. It's not just something that your doctors can't figure out what it is. You're tired all the time. There's no real reason you're probably making it up. So they just dump it in chronic fatigue syndrome, they've proven that it's a brain issue. Somehow, your brain isn't talking and doing what it needs to do anymore to the rest of your body. So that comes with a lot of, I just forget certain words.
I used to be pretty smart. I went to school. I got my masters in dance movement therapy. I wrote lots of papers. And now, sometimes I just can't think of words. It feels like your brain's a little broken. And the fatigue is not just like, oh, I need to take a nap. It's like, I could take a nap after a nap. But if there's this crushing fatigue that even just getting up to do dishes, or standing for a few minutes overwhelms your brain to think that you can even do that. Also, it has to do with your lymph actually working to get some of these. So the lymphatic system is kind of like a garbage disposal system. Anything your body doesn't need, it pulls out, and then it tries to run through your body, and you eliminate it through urine, defecation, sweat. Or it'll go back in through your blood vessels around your heart and get reused. So when that's not working right, it's more stagnant in your system. So then over time, your body is doing all these things to help it out, and then it gets more and more stagnant. Because then, there's more fluid to move out, and the fluid just turns into it, and starts to kind of go from a liquid to more of a solid in certain places. That also happens with the lipedema. There are lymphatic issues as well, and the lymph system is one of the systems that maybe doctors get 45 minutes. More people are talking about it now, but it's a system that they couldn't really see because they didn't have the technology to see it.
So like animals and endeavors when they have passed away, it was so light, and it's right at the skin surface that it would dissolve, so they couldn't see it. They would open up and like, oh, there's a heart, there's a blood vessel. So now with technology imaging and screening, they can see how it works more. So there's a lot more research done on the lymphatic system. But still, all of these are kind of in their newer phases to get research money to actually find medical interventions, whether it's just manual stuff like massages, or compression support, or medications. And unfortunately, the truth is women make up a huge amount of the population. But if they don't get funded for research, and if they don't think that there's a pill or something that is actually going to take care of it, that's profitable. They don't really have companies researching these things. That's the truth of the medications. So fortunately, there are some donors, and there's been some studies here and there where they're allowed. And hopefully, that'll get better. If more people know about these things, then they could talk to their providers, or talk to their people to try to get some support. So all of these things that I have make it just difficult to think, to do research. Each one of them independently, they have their own protocol. So my food, when you talk about food, one says, do vegetarian diet. Well, I did that forever, and that got me nowhere.
Others are like, stay away from this, or add this one food, and that might be really high in histamine for me. It's really overwhelming to figure all this out. They all have similar symptoms, like hypermobility. It will give you headaches, it'll give you pain, I'll give you brain fog, and it'll make you tired because your body doesn't have the right support system for your skeleton. So even driving in a car, you could feel uncomfortable because you're the passenger. Because your body's moving around, so your body's constantly trying to be stable. So that takes a lot of energy. With chronic fatigue, one of the things that it cures, or ways to treat it is to literally do nothing. Have someone shop for you, have someone clean your house, do all that stuff. Maybe take four hours of your day to do something. Look at the list of what you need to do, and maybe only do one and two of those. Rest is the only way to do what they figured out now to help chronic fatigue.
That is a whole different mindset when you're trying to help yourself figure it out in our culture, to do more like, how can I do more of that? Can I push through? So there's a huge learning curve, I know for me to kind of figure out like, even taking a shower, I have this little tracker thing that's called the Visible armband for chronic fatigue, and people now do it for long covid. Washing the dishes took all this energy. It tells you how many pace points you should have. I have 10. And then it tracks how much energy you use by doing different activities throughout your day. So taking a shower is. A lot of times, most people if they report, oh, gosh, the only thing I could do today is take a shower. Anything else wipes me out. It takes a lot of energy. So to learn what takes a lot of your energy and how to prioritize that to your day, and the stigma that comes with that people, just think that you're lazy. You know what I mean? It's like, oh, you're just lazy. You just don't want to do it. Oh, you're procrastinating. There's all these negative connotations with rest and health. And even my own perception of what that means.
Heather Nelson: Before we started recording, I was saying that I love when people tell their story because I think it educates people, and it also triggers somebody who might be thinking they have something. Or they're going through that same thing and they're like, hey, I'm not alone. There's somebody out there that I can connect to lean on. But really for me, having and hearing these stories really puts life in perspective. Because sometimes, we get frustrated by the person that cuts us off, or we're frustrated because we have a headache, or kids are screaming at us, or whatever life might throw at you. You feel like your whole life is horrible, or you had a bad day. But then I'm like, people are really going through so much more in their life, whether it's chronic pain, or illnesses, or things that they can't control. Then I'm like, I just think that we all need to be just more appreciative of our life, and empathetic to what other people are going through. You had mentioned the person at the grocery store, why are we judging what's in people's carts, or what they look like? Because sometimes, it's not really up to them. You think of somebody who got in a car accident and they're burned to death, and they have these awful burn marks all over them, that's not their fault. And going through life with a little empathy with the people you interact every day, I think is just such a great reminder.
Donna Piper: Thank you for talking about that. They're called invisible illnesses because I may not present that I'm in pain constantly, but I am, and a lot of times. If you meet me when we first got in the call, I'm like, oh, my God, my hip is killing me. And as a person that has it, you don't want to talk about it all the time, either. Because when you talk with people a lot of times, I know I cancel a lot of things because I'm in pain. You can't predict it, so you don't know when you're going to have a big flare day. So then you feel guilty and bad. So then you tend not to make plans, because then you don't want to be the person that cancels. But then you also don't want to be again, like, oh, I'm canceling because I'm in so much pain. So there's all of these social aspects to it too. And what does pain like? If my legs are feeling really heavy and they're bloated, how can I even relay that to you from a physical symptom. I'd have to tell you, and then I'd have to talk about it all the time. Obviously, I love to talk about all this stuff. I don't have a shortage of words. But you also don't want to be a burden to someone because you feel like a burden anyway. Because you're like, oh, my god, I can't even do my own dishes. What was going on with me? Until you kind of figure that out and get a diagnosis or something, and then get support. There are treatments.
If you have chronic fatigue syndrome, I highly recommend a thing called the Perrin Technique. He did research for probably 20 or 30 years of his life's work, and he's really been at the forefront to help women with chronic fatigue syndrome. He also wrote a book about long Covid, if you have that. So there are researches and people out there that have been doing this, understanding these women. They would come and would listen, and they would try to be like, okay, let's figure this out. And then they would see other women kind of the same. So then, now there's a little bit more surgeons and doctors, but most of the population has never heard of it. And when you tell them that you can't lose weight by diet and exercise, their brain shuts down. They're like, no. That doesn't compute. We're told that you just diet and exercise, and you lose weight. And when you tell people that, that takes them a while to even understand it. And it takes you even a while to understand, what do you mean? I can't control what my body does. If you get cancer or anything else, but any chronic illnesses, you don't know that your body's doing all the stuff behind the scenes until you have all these symptoms.
Heather Nelson: Actually, I had somebody talk about body imaging, and how to love your body for what's given to you. Your shape, your size, your color, whatever. And so if anyone's listening to this, go back. I don't know what episode. It'll be before this, but it just talks about body image. No matter what we've gone through, or what we're going through, or what we look like, how we accept who we are as a person and in our body. So I just wanted to say that I want to bring up a topic because, and I don't know how you feel about this, but I think it'll be a great conversation. Because I think a lot of people are struggling with this, and I'm seeing more change in this. When you go to a doctor, they're like, take this medication. Take this medication. Take this medication. And I think a lot of people now are leaning toward, I know you do a lot of spiritual stuff. I'm sure you do some meditation and do more of a holistic treatment for yourself. How does that play a part in what you're going through? And then also, does cannabis help in a lot of the stuff that you are going through?
Donna Piper: So I definitely think there needs to be this bridge between traditional allopathic medicine, because there are some medicines and things out there that are really helpful. It's not going to change everything right, and you need to also learn what your body can respond to, and what it needs. And when you talk about body image and acceptance, it is huge. If you can't really change, unless you're aware, then you have to accept certain things. And acceptance is a lifelong practice. How can I do these lifestyle changes that maybe I don't want to do? Because there is a lot of anger and hate towards your own body. I'd be lying to say, like, oh no, I'm chill. I went into a lot of spiritual work because I was having such a hard time with my body, and that forgiveness is acceptance. And forgiving myself for having these things. But there's still this human part of me like, no, I can figure it out. Maybe I will do this thing. I was a trauma therapist. I did PTSD specifically for a long time, and I have all this education, but I can't figure my own stuff. So then there's a lot of guilt and shame. Why haven't I healed my trauma enough?
So there is this relationship with medicine and holistic things that you need to find what works for you that's supportive. And I used to go from a feeling of like, I need to fix it. Now, I just need to find more support. So looking at more support. If traditional medicine supports you enough to get you where you need to go, to do the other things to support you, then it doesn't have to be forever. You have to figure out what's worked with you. And to cannabis, I haven't even ventured there. I know a lot of people that do have pain, especially physical pain, cannabis works and different things to that. I have some good friends that like that, that's what they do. She's a nurse. She helps people with all that stuff. I haven't tried any of that mainly because I'm kind of an anomaly when it comes to anything.
The one thing that should work for people gives me a bad reaction. I have had migraines since I was seven. For decades, people have been like, get Botox. Get Botox. And my friends have had it. It's so great. It helps you. I'm like, I would be that one person that would have the eye permanently down. I've never been that fortunate so that these things work, so I've always erred on the side of caution. So I take medication. Fortunately, I don't. I have H1 and H2 blockers, which are over the counter, and some supplements to help with lymphatic support. Very basic supplements that I take. The weird thing is I have all this stuff, but my labs and stuff are good, so my blood works well. I don't have diabetes. I don't have insulin resistance. I don't need blood pressure medication. Because I have all of these things, and my BMI is high, but that's the anomaly with these certain other diseases that, fortunately, I don't have. But what I do have is manageable somewhere else, but I always find that there is a place for both. And that's really what I go through. If it supports your body enough to get you to do what you need and want to do in life, do it. If it supports you in a way that starts to make other things not work as well, or diminishes your quality of life, then find alternatives. So that's kind of my philosophy on that.
Heather Nelson: That's a great perspective because you hear from both sides. But I love that, depending on what it is, and you know what makes you feel better at the end of the day. I do have a friend who has a lot of chronic pain, and cannabis does help her. She doesn't like smoking it, but drinking it helps her with pain and inflammation. So I was just curious. I know cannabis is more of a thing that is being more talked about, and how it's able to help people through some of these things.
Donna Piper: My friends that do it and have nurses that prescribe it and stuff think it's like the best sort of bridge between both medicine and natural things because it can be prescribed in certain dosages. I just can't personally talk to it because I've never been offered it, or it's never been a thing where it's like, oh, I should seek it out. I think I just have all these other things, list, tether of stuff to get through.
Heather Nelson: I want to have you on after your surgeries. I'd be curious to hear how the surgeries have changed this, because I think everyone now wants to know, and I definitely would love to have you on for that. Tell everyone a little bit about your podcast, what it's about, where they can find you? Because I know that's a lot of the work that you're doing right now, too.
Donna Piper: So I have a podcast called Dear body, I'm Listening. And what I go over is all of these different things, of the struggles to have a chronic illness, especially an invisible illness where there's a lot of grief and sadness. My background is a psychotherapist with dance movement therapy, I have my thesis, and all my work was with trauma that's transitioned over the years to coaching, things and relationships. But also, Pilates and movement are a big thing. So I definitely have a take on how people should be moving. And it's not like Instagram Pilates. It's more traditional how Joseph Pilates trained. But if you have a chronic illness, really taking it slow, rest, not our traditional way.
Again, it's a whole another blueprint you need when you have chronic illness to heal yourself, and it doesn't fit in line with what is currently out there in the mainstream that's really accessible. So that's really my whole thing, to try to get knowledge and awareness. Because I know if I was diagnosed with lipedema when I was 15, psychologically and emotionally, I would have such a better relationship with my body, and I would have been able to understand myself more and know what I need from my doctors. I'd have more education of what I actually needed other than going in and thinking that they were going to help me. I could ask questions. Because sometimes in life, you just have to write, say the right key phrases, and then you get whatever you want in life. So you can find me there at my podcast. It's in all the places. My website is donnapiper.com. I'm not great at Instagram, but that's where I hang out. So social media is not my thing, but I do like to play around with it, and that is at Donna Piper. And then my journey with just the lipedema surgeries, and I would love to come on again, is at lipedema_donna.
Heather Nelson: I love it. Thank you so much for being here. Is there anything we didn't talk about, or anything that you want to leave the listeners with today?
Donna Piper: Just really listen to yourself. Know more about your body and health. And if you really think that the answers that you're getting from your providers are not in alignment with what you know, continue to dig some. It may take a while. It did for me, but you will be led down the path a little bit, so don't give up. It is frustrating. It's inexcusable what they do. I'm not debating any of that. But right now, you have to work with the system you have. So other than saying the big F, you might say that initially, but then go back. Figure out the ways to what you need to say in order to get the help that you deserve. It's difficult, but don't give up.
Heather Nelson: Such a great reminder. Thank you so much for being here. Thank you for telling your story. I wish you nothing but the best, and I definitely would love to have you on because I think I'm interested to see, obviously, this is still a new thing, but how the outcome helps your life. So thank you again.
Donna Piper: Thank you so much.