Most people, even most doctors, have never heard of lipedema, a disorder that affects nearly 19 million people in the United States alone. In this introductory episode, we'll talk briefly about what lipedema is, and how I came to discover that I was one of those 19 million people.
Welcome to the debut episode of the Spotlight Lipedema Podcast. I can't describe how excited I am to get this podcast finally started. It has been long in the making. I've been rolling ideas around in my head for well over a year, but finally got things together, and with the help of my wonderful producer Chris Duckett, was able to get this episode done and the podcast officially launched. Hopefully, this is just the first of many, many more to come.
On this episode I'm going to give a quick introduction to lipedema for any listeners that may be unfamiliar with it or who've been recently diagnosed. That will be just a baseline for what will become my story - how I have dealt with being fat for most of my life, and how I came to be diagnosed. How I'm living with lipedema will be saved for future episodes. Also in future episodes, we'll get into more detail about lipedema and hear the stories of people with different stages and types lipedema and at different ages. I think you'll find that we have lots of similarities in our stories, but what we can really learn from is how our experiences have varied.
Like everyone diagnosed with lipedema, I've had to learn a lot about what it is, what it isn't, and how to deal with it. I encourage everyone to visit the following websites that have been so helpful to me.
Treatment, Research & Education of Adipose Tissue Program at The University of Arizona Health Sciences: https://treat.medicine.arizona.edu/
The Lipedema Foundation: https://www.lipedema.org/about-lipedema
Fat Disorders Resource Society: https://www.fatdisorders.org/lipedema
The Lipedema Project: https://lipedemaproject.org/
Lipedema Simplified: https://lipedema-simplified.org/
Special thanks to the wonderful people who have been so supportive to me as I started my lipedema journey - Abbi Bliss, Maureen McBeth, Joni Donlon, Kate Megonnell, Barb Steinberg, Carol Zisfein, Helen Luqman, Emilza Ordonez, Susan McVey, Mary Pellnitz, Raina Singh, Wednesday Vail, Miriam Aladdin, Dr. David Song, Kimberly Miller, Myrna Marcellin, Dr. Nadiv Shapira, Dr. Janna Latchchinina, Catherine Seo, Leslyn Keith, Mende Staggs, and Raeannn Sparks - and of course all the wonderful people on Dr. Song's team at Georgetown University Hospital and on 7 Bles.
This episode is dedicated to the strong women in my life who now guide me from Heaven - Julia "Judy" Pellnitz, Catherine "Kitty" Spaluzzi, Anna Commesso and my spirit sister Jackie Conti Antretter. I love and miss you all.
Producer: Chris Duckett - https://www.duckettproductionservices.com/
Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php
SLP 1 - Introduction
Welcome to the Spotlight Lipedema podcast. I'm your host Lori Pellnitz. I'm not a doctor or a medical professional. I'm a woman with lipedema and lymphedema who wants to shine a light on what lipedema is and the challenges of living with it. This podcast is dedicated to everyone with lipedema both those that know that they have it and those who remain undiagnosed when I learned about lipedema back in 2017.
[00:00:28] I was shocked that something like this. Exist with most doctors knowing nothing about it. I knew right then and there that I had to play my part in making this disfiguring disorder better known so fewer people will continue to go undiagnosed My hope Is that the spotlight lipedema podcast will become a forum where we can connect to people living with shared challenges concerns and fears a place where we can share knowledge of not just living with lipedema, but thriving with it someplace where we can learn from each other and hopefully from some experts in the field.
[00:00:59] Thank you for joining me on my lipedema journey, welcome to the very first episode of the spotlight lipedema podcast. I'm your host Lori Pellnitz. I am very excited to be finally getting this podcast kicked off. This is something I've wanted to do since I first learned about lipedema back in 2017. I love listening to podcasts.
[00:01:21] So the first thing that I did when I learned about lipedema and figured out that this is what I've been dealing with my whole life. Was to look and see if there was a lipedema podcast, but I couldn't find any there were other health podcasts that did an episode or a segment on lipedema, but nothing dedicated to it specifically so I decided I would learn more about it and get one going.
[00:01:44] So here we are just to start off with a simple definition of lipedema. It is a fat disorder. I know for many people that sounds like a cop-out already. Like I'm trying to make an excuse for why I'm fat, but that disorders are a real thing lipedema is a real thing. It is not a made-up internet disease lipedema was first identified by doctors at the Mayo Clinic in 1940.
[00:02:12] Yep. I said 1940. Lipedema fat is different from normal fat. It isn't soft and Squishy like normal fat. It's nodular so you can feel like there's little more balls or grains of rice under your skin and the distribution of lipedema fat tends to be symmetrical and concentrated on the legs hips buttocks and sometimes the arms as well.
[00:02:37] It's actually estimated that about 80% of people with lipedema will wind up having it in their arms. The more we learn it appears you can have lipedema almost anywhere on your body. But from the waist down is where we see it most of the time. And while it's predominantly an issue for women men can have it as well and there's a huge disproportion between the upper half of our bodies and the lower half.
[00:03:03] Just using myself as an example at my largest. There was at least a five size difference between my shirt and blast size and my skirt and pants eyes. Folks will stop edema will have either an exaggerated pear shape large saddlebags a big buttocks with a shelf or trunk like lumpy legs or all of the above another classic sign of lipedema is the ankle cuff the build-up of lipedema stops at your ankles.
[00:03:33] So you get what can almost look like a bracelet just above your ankle. And lipedema is painful. It can be a constant ache in your legs or a feeling of intense pain, especially with pressure. Just an average house cat walking on your leg can feel like someone is driving a nail into it. Sometimes it's restless legs.
[00:03:55] That can't get comfortable no matter what you do. And the swelling that comes with lipedema, especially at the end of a long day just makes it worse normal fat is a tough enough challenge for most people but lipedema fat tends to be mixed with fibrotic tissue and filled with fluid neither of which response particularly.
[00:04:16] Well traditional dieting and exercise. So, how do we deal with it? Well, we'll be getting to that in a future podcast. So while I wanted to start this podcast to have another way for Lymphedema patients to learn more about the disorder and what we're dealing with at the various stages of lipedema.
[00:04:34] I also want this to be a place that gives a voice to lipedema patients unlike a YouTube video or a post on Facebook podcasts can be very personal very intimate. It can be like, it's just you and me talking in the car while you're driving to work or while you're getting ready to go to work in the morning or maybe you're listening to the podcast as you're sitting getting treated by your therapist or dozing off to sleep at night.
[00:04:58] So when you listen to these podcasts, I want you to imagine a sitting around the table chatting and having a cup of coffee together or maybe a glass of wine. Whichever you prefer. This podcast is about us and as it progresses, I want your feedback. What did you like? What didn't you like? What did you find helpful?
[00:05:15] What information would you like to see in future podcasts? I have a Facebook page where you can post your feedback and make suggestions for future podcasts. And while I'm based in the Washington DC area. This is a podcast not just for folks in the u.s. So whether you're in California or Oklahoma, New Zealand, Germany or Dubai, you are all part of this community.
[00:05:36] I'm initially aiming for a podcast a month, but that may change as I put together lists of potential episodes. I've already got a lot of ideas and topics I want to address so we'll see how it goes. So for now, let's take a quick break and then I'll tell you my story.
[00:05:58] I've had weight issues just about as long as I can remember. I was 12 the first time. I joined Weight Watchers. I must have joined and quit Weight Watchers at least 30 times in my life. I would lose slowly get to about 15 to 17 pounds and then it would stop I would follow the plan and nothing would happen week after week after week you lose.
[00:06:22] Hope you give up and you stop going then weeks later you figure you have to do something. You figure it out. Somehow this time you're going to do something different. You're going to eat less exercise more anything different and you hit the 15 to 17 pound mark and it stops again, but that's not the worst part.
[00:06:44] The worst part is that when you joined up again this time you were 20 pounds heavier than you are the last time you joined. So you aren't even breaking even you try and you try and you fail your family doesn't believe that you're trying they don't believe you're following the plan. Your doctor doesn't believe you're following the plan.
[00:07:04] But you know that you are does this sound familiar? Well, it wasn't until I got to college where I had two great friends. I was with them all the time and they couldn't figure out why the clothing I brought with me to school in September. Didn't fit me in May we did the same things ate the same things drink the same things and their weight stayed the same and I gained 20 pounds.
[00:07:29] We knew something wasn't right. But what again somehow it felt like my failure. I wasn't trying hard enough was I sabotaging myself was I sleepwalking to the refrigerator and eating a gallon of ice cream, of course not. I would insist that I wasn't overeating. I was following the eating plan and still gaining or at least not losing I was exercising.
[00:07:50] I was told that that was impossible. I was told you know, it's the law of thermodynamics. I was told I was lying to myself. I was being delusional and I got bigger and bigger. I finally did have some weight loss success back in 2003 when I followed the South Beach Diet until I didn't when I was on their phase one low card plan.
[00:08:11] The weight came off will not most all of it. But a good chunk. I lost about 75 pounds and I was thrilled. The only problem was that not much of it came off of my hips buttocks and legs. I lost a lot on top but not on the bottom which made my hips look even bigger than they were when I started but they weren't they were actually sizes smaller and the disproportion really showed.
[00:08:35] Then I got a dog job stress has kicked in my company got bought by another company and then I started to have hormone issues that caused me to be severely anemic very low energy. So any meal prep was just about impossible. I ate what was fast and easy your could be delivered and the weight started to come back.
[00:08:53] I still didn't eat a lot but my food choices were horrible. I felt too sick and stressed out to care when I tried to go back to the South Beach Diet. When I started to feel better even that wasn't working for me anymore. So I started to look for more answers. I read all kinds of health and nutrition books and then when clicked it was called the smarter science of slim by Jonathan Baylor.
[00:09:17] I learned a tremendous amount from this book that it wasn't overeating. In fact that made me fat but eating sugary and processed foods were putting me on this blood glucose insulin roller coaster that was causing a lot of my problems. So I weaned myself away from processed foods the sugars and starches in the grains and things started to move slowly but in the right direction, then someone suggested that it might move a little bit more quickly if I eat more fat.
[00:09:49] Eat more fat, huh? I read more about why that could happen and I tried it and it worked. I actually lost about 55 or 60 pounds happy days are coming in but I don't want to get into diets here because you know life happened again, and I veered off track but not totally so while I stopped losing and gained a little back it was nothing like it had been in the past.
[00:10:12] So now fast-forwarding several months. I was working a part-time job. There's a freelance job that would put me on the phone with clients and talking about health and nutrition and one of my clients was a wonderful woman named Abby and Abby changed my life. Abby told me that she had challenges losing weight because of her lipedema lipedema.
[00:10:32] What's lipedema now, I'm a researcher by trading. I've been fat my whole life and I had never heard of something called lipedema. When Abby started to explain to me what it was I couldn't believe it. It was as though she was describing me. We had a great call talking about it and I was Googling away while we were talking and sure enough.
[00:10:51] That was it. That was what I'd been fighting my whole life. Thank you, Abby. Thank you for giving me the answer to my decades-long quest now. I knew what I was dealing with. Well almost. The more I read about lipedema the more I felt Vindicated see I knew I wasn't overeating. I knew it wasn't because I wasn't exercising enough.
[00:11:12] I knew it wasn't my fault and then I felt terrified. What do I do? Now? How do I deal with this? I'm not married who was going to help me deal with this. Where do I start? Is there a podcast? Nope? No podcast Facebook. What can I find their lipedema sisters USA? I found my people. Another Facebook groups to lipedema Warriors liposuction groups eating plan groups lipedema Fitness groups so much.
[00:11:41] I needed to read and learn. How do I find a doctor who can confirm that? This is what I have when so few doctors have even heard of lipedema or worse yet say it's a made-up internet disease. I went into the groups and I read my learned and the Panic was gone. Or at least it had subsided for a while.
[00:11:59] I learned about a couple of doctors not too far from me that could make an official diagnosis and I decided to go to see dr. Shapiro in Delaware about a two-hour drive, but he knew what he was talking about and I didn't care about driving a couple of hours to go to see him. When I got to dr.
[00:12:16] Shapiro his office his staff was wonderful when I finally got to see him. He looked at me and said I don't know how you're even walking. I told him I have no choice. I live alone and on the second floor of my building a wheelchair isn't an option. Dr. Shapiro confirmed that I had stage 4 lipo lymphedema with secondary lymphedema.
[00:12:36] He did a full examination and an ultrasound of my legs and said at this time he wasn't able to do any kind of liposuction on me because of my very large saddlebags the large mass of lipedema fat and lymphatic mess made it so I was not a candidate for liposuction until it was removed. He told me that my first priority was to find a certified lymphedema specialist who had experience working with lipedema patients.
[00:13:04] And then I had to find a surgeon who could do the reconstructive surgery to remove my saddlebags. He also encouraged me to follow a ketogenic eating plan to lose as much normal fat as I could before doing surgery. So when I got back home, it was back to Facebook and lipedema sisters USA looking for a recommendation for a certified lymphedema.
[00:13:25] Therapist, one of the members in my area Miriam who you will meet a future podcast recommended that I get in touch with Maureen a therapist in Columbia, Maryland. You'll also get to meet her in a future episode. I made an appointment to see Maureen as soon as I could. When I arrived at my first visit and hobbled into the physical therapy office with my two canes Maureen greeted me with a big hug and an apology.
[00:13:53] And this meant so much to me. I can't begin to tell you. The first thing out of Maureen's mouth was to apologize to me on behalf of the medical community because as she said we have failed you you should never been allowed to get this bad. The first appointment was a consultation and a discussion of what we can do in the near term to get some improvement in my legs.
[00:14:15] We talked about manual lymphatic drainage or MLD wrapping compression and eating Quito. We also making a made an appointment for me to come back the next week to get wrapped for the first time. Maureen told me that before I go for my next appointment. I should weigh myself then I would get wrapped and when I would take the wraps off I need to weigh myself again immediately.
[00:14:37] The difference would be our first indicator of how much fluid I was holding in my legs. So that's what we did. Maureen wrapped me from my ankle to my hips and somehow I managed to get my big body and my bad knees up the flight of steps to my apartment. I was able to stay wrapped for two days. And when I took the bandages off and weighed myself, I was down more than 15 pounds.
[00:15:02] I had lost 15 pounds of fluid from my legs in two days. I worked with Maureen will enter with her colleague Chanel getting MLD getting wrapped and wearing ready wraps on my lower legs for a few months and was able to reduce the size of my lower legs by 15 and 17 centimeters the upper legs and hips buttocks area were another story they got a little bit smaller, but without doing something about my saddlebags.
[00:15:31] Our ability to progress was blocked. So we started to look into the right surgeon to help me get rid of my saddlebags. I found a couple of surgeons in my area that could do the job, but would they be willing I suddenly became petrified and panicked again. What if they said? No, what would I do?
[00:15:49] Where would I go from? Here? We met with dr. David song at Georgetown University hospital and after an examination and discussion he agreed to do the surgery, but and it was a big butt. Which I have to say somehow seems appropriate for somebody with lipedema and lymphedema. But anyway, he said he could give me a 100 percent guarantee that there would be some kind of post surgical complication.
[00:16:17] Didn't know what it would be but there would be something it could be anything from a mild case of cellulitis to all-out sepsis. He made it clear that this was a very risky surgery. I told him that I understood but that losing my Mobility was not an option. I was not going to give up without a fight.
[00:16:39] I did not want to have to require a wheelchair at this point in my life if at all and I would do whatever I needed to do. So we set a date August 6th 2018 as the date of my surgery approached. I got more and more nervous, but I was still determined. On the actual day of my surgery. I was literally shaking from nerves my close friend.
[00:16:59] Joanie had taken the day off to get me to the hospital and was there for me the whole day? I don't know what I would have done without her. The surgery went really well and what was supposed to be a 5-hour surgery was done in half the time the surgical staff and patient care team at Georgetown University Hospital were amazing.
[00:17:17] I can't thank dr. Songs team enough. And also I'm thankful to the nurses and text on Georgetown hospitals 7 blessed floor. I received exceptional care there after two weeks in the hospital. I went to rehab at Adventist Health Care. Unfortunately shortly after I arrived I had my first case of cellulitis in my right leg complication.
[00:17:40] Number one, that could be a real challenge for people with lymphedema. The patient care staff there was also wonderful my cellulitis cleared up and in two weeks. I was back home where MedStar visiting nurse service took over my care think started out pretty good until I managed to accidentally pull one of the drains that was in my left leg out within a week.
[00:18:02] I had a huge wound open up on my upper left thigh and all the fluid that was supposed to be going into that drain. Found a new exit so I had complication number two. I wound up needing to get a wound vac and because of the amount of fluid it would have been hard to keep up with it any other way and of course, you know complication 3 was right around the corner in October.
[00:18:25] I wound up back in the hospital with another case of cellulitis again in my right leg. So I wound up with another one week in the hospital. Requiring two different simultaneous IV antibiotics to see Improvement in the cellulitis and then we had to switch to a different to IV antibiotics to get me transition to an oral antibiotic so that I could go home this case of cellulitis.
[00:18:52] And the strong antibiotics knocked more out of me than the surgery did and it literally took me more than two months to start to feel almost back to normal. My legs were significantly weakened and my stamina was completely gone. I continue to try to recover from the cellulitis and wait for the wound in my left leg to close by this time.
[00:19:13] It was February 20 1960 months after my surgery. My nurse Myrna was convinced that there was something in my leg that was preventing the wound from closing. We did X-rays and ultrasound CT scan and all that could be seen with the surgical Clips. Well me and it was right and in July 2019. My wound revealed a surgical clip that needed to come out and it finally worked its way out on its own.
[00:19:40] Since then everything has started to close up pretty quickly, but it is still not completely healed more than one year after my surgery. However, now the wound is very very small even smaller than the size of a tip of a ballpoint pen. So that brings me to today. And getting this podcast started I wanted to get it started earlier, but with all the challenges of the last year it took me a while to have the time in the mindset to begin.
[00:20:05] I'm still trying to rebuild my strength and stamina. I've been challenged in my ability to prepare meals. So I've not been as good at sticking to my eating plan as I had hoped but it's getting better and this podcast will help me stay focused on what I need to do some have suggested that I do bariatric surgery, but I don't think that that is something for me.
[00:20:24] I don't think quantity is an issue. But as I continue to heal and better able to prepare meals and get more active and as I can get myself better wrapped in compressed, I think that I'll make progress in weight loss. But since I know that this is something that's helped so many ladies with lipedema.
[00:20:39] I'm going to try to have an episode in the future about how to decide whether or not it's the right thing for you. Other episodes being planned will focus on diagnosing lipedema various eating plans for lipedema lipedema research tools and hints for living with lipedema liposuction and more lipedema stories.
[00:20:57] And as I said earlier, please feel free to go to this podcast Facebook page to give your feedback and ideas for episodes that could help you stay tuned for our next episode, which is going to be called. It's not obesity. It's lipedema. Thanks for listening until next time stay strong have patience with yourself.
[00:21:16] Stay optimistic and just take things one day at a time.