Living with Lipedema

Transcript

Jamie: Hi friends, Jamie here with some updates. This is the beginning of our show's third season. We started the show off with a mix of women's personal stories and interviews I did with experts. Last season, we changed our show name to 'If You Knew Me' and we tweaked the format. Every episode last season was a woman's personal story.

We are continuing with that format in this season. I co-produced this show with my husband, Piet, and he, and I just got married. And after the wedding, we took a break from producing this podcast for a few weeks. And during that pause, we were hit with a big vision for 'If You Knew Me'. We really look forward to sharing more about that vision in the coming months.

In the meantime, I wanna remind you that we will host our first live online event, this September more information about that at the end of this episode. So stay tuned. 

Okay. So now into today's episode, Every week on 'If You Knew Me', we walk into the heart and mind of one woman. Each guest can choose to share her real name or to stay anonymous.

This week we hear from Kerry Jones. That's her real name? 

Kerry is a personal chef in Portland, Oregon. Her passion for cooking comes from years of struggling with all kinds of body issues. Just lately she learned that she has a condition called lipedema. You likely haven't heard of it, although it affects one in every 10 women.

When you have lipedema, your fat cells don't shrink. So no matter what you do, you can't change your body shape. As it progresses, your legs can become extremely large, heavy and painful. After learning all of this, Kerry decided to take action. 

Her story's entitled 'living with lipedema'.

Kerry: I've been really struggling with this new diagnosis of lipedema.

I already kind of had enough on my plate health wise. It's been kind of the main focus of my life, my entire adult life. And I think I don't really show that I don't wanna be too high maintenance or demanding or like victim role vibes. The people that know me well know that I have Hashimotos that I have colitis.

Um, that I had an Epstein bar, a virus flare when I moved to Portland from New York, uh, that I, you know, had a ovarian cyst removal in New York city a few years back. Um, there's more, but I don't really talk too much about the ins and outs, um, sort of boring and also heavy. And so, uh, I haven't gotten all my preexisting shit under control.

I've been waiting, working towards that for many years now, but, um, this new diagnosis was kind of. it's that same thing that happens when I was diagnosed with Hashi where like it's relieving because you understand that this is why your body is this way. It's an explanation you feel affirmed. And like, in the case of lip edema, it makes.

Your body a certain way, and you cannot change that. It doesn't matter what you do. It doesn't matter that my diet has been pristine. I've been gluten free and dairy free for 10 years. I don't do peanuts or soy. I don't do any ranted oils. Uh, I, you know, only drink spring water. I only bathe in, uh, water.

That's been. Filter that doesn't have chlorine and fluoride. I don't use any cleaning products or makeup or skincare that, um, has any toxicity. Like, I go all the way in every aspect of my life and I have done for years now. And, um, none of that has ever made a difference in. The way that lip edema manifests in my body.

And because I didn't know it was there because I didn't know this disease process was happening. Um, I made it mean so many things about me, my abilities or what I thought I was doing versus what was actually happening. I mean, it really sorts, it begins to affect your mental health. Because you're so confused.

There's a disparity between the input and the output, you know, when you're exercising multiple times a week regularly and really feeling good about that and noticing gains in certain ways, but then these certain things never change. Um, it's just so frustrating. And again, confus. So when I got that diagnosis, it was very kind of relieving and affirming to know that that's why this is happening.

It's not my fault. It has nothing to do with what I'm doing,

the identity of being sick or the identity of having diseases, having disorders, having conditions. This starts to build in my mind, in my psyche, who I am. It is a sick person, but that, isn't what I want to be. That isn't how I present, but it's in there and. It's happening. It's always been happening since puberty.

It's a burden and, um, it's undeniable.

So lip edema affects women. Um, it actually affects about 11% of women and it is a lymph and connective tissue disorder. um, but it has previously been thought of as the painful fat syndrome. The reason for this is when you have lipedema you a have an excess of disease tissue. usually expressing on the legs.

The legs are always involved with lipedema. Um, it's also painful that tissue, that extra tissue is very painful, very tender. There's easy bruising, but a lot is not known. I mean, there's conferences every year about lip edema and all of the top surgeons and doctors and manual emphatic, drainage therapists and people in this.

Sphere go to the conference and share papers and, and studies and personal testimonials and, you know, firsthand experience with their clients. And the, the world of what this disease looks like continues to grow and build, but it's hugely misunderstood and, um, understudied and, uh, underdiagnosed. I mean, it took me till I was 38 to be diagnosed.

So that's just astonishing. The only treatment for lip edema is liposuction. There are conservative treatments that. can begin to lessen symptoms, but I've been told by numerous practitioners that I've been working with since I was diagnosed in October, 2021, that they rarely really do much for folks with lipedema.

They're not stopping the disease process and they're really just sort of a bandaid. So those conservative treatments I did from the beginning. That includes wearing compression garments. So like medical grade, really tight, really hard to put on leggings.

So I'm a personal chef. I've created a business it's centered around healing myself. It's the reason that I. Do the work I do is trying to heal, you know, myself through food, food as medicine. And I do that for my clients as well. And I cook in leggings and a big t-shirt in my chef coat. So I was wearing those compression leggings, like on day one after diagnosis.

Um, and then there's, um, some pumps that you can go. You can go to a, um, practitioner and they put this strange sleeve on your legs. Lip edema affects the legs mostly. Well, it affects the legs in everyone that has it. Um, but it also can affect the arms or the trunk. It manifests as, uh, easy bruising pain in the legs, heaviness in the legs.

I've had these symptoms, my whole life it's to the point now, where, when I sit in my. I have to pull my left leg in after me with my hands. I can't pull it in myself with my hip flu or muscle. There's a heaviness that starts to build and build as a progressive disease. And so it won't be getting better on its own.

If anyone could stop the progression, it's me, what I've done is slowed the progression, but it is still progressing. And I see it even when you do. The the proper treatment for lipedema even when you do the lipo section, the surgeon, or the doctor that you work with on that treatment, uh, emphasizes the need for manual lymphatic drainage after the treatment, because it's so necessary to move the lymph.

Like the thing with lipedema is your lymph flow is stunted it's thwarted. Something has happened. and it's no longer moving the way that it should. And so there's blockages and it manifests pain and heaviness and swollenness and a sort of particular dimpled appearance in the tissue. So the reason lipo suctions, the only treatment is that it removes the disease tissue lipedema cells.

Can't shrink like normal fat cells. Normal fat cells shrink and grow. You never lose fat cells, but they shrink and grow. And the Beema cells don't shrink. So the only way to treat this disorder is to remove them. So I actually, I, I went through the treatment of my arms about a month ago and it was very strange, but, um, I'm healing very well.

And I'm glad I did it.

Lip edema is so tied to mental health. It's undeniable. I mean, I've talked to so many women that have it just, you know, on the internet over the last several months and everyone has the same experience. My experience has been. Just feeling like I'm gonna, I'm gonna discover it. There there's something that I haven't figured out yet.

There's something I'm doing or eating or some way that I'm being, um, that is the problem. There is, there is a problem. I'm very clear on that. Always since puberty, there is a problem with my body. Something is wrong here and it doesn't look right. It doesn't act right. I'm 38 and I'm just diagnosed. it makes absolutely no sense.

I've I've, it's been showing itself in my body for 22, 3, 4, 5 years. And I was just diagnosed. Nobody knows about this thing and you see people everywhere with it. Once you realize once, you know, I'd never even heard the word lip edema before October. Lip edema looks like tree, trunk, legs. Your ankles are not streamlined into your shoes.

They're sort of like more hearty and there are certain fleshy areas that always are present. One is just under the knee, kind of on the inside of the legs. There's a, a big pad there that's always present with lipedema people. Um, super easy bruising, super extreme tenderness. It's mistaken as cellulite frequently, and because so many women have cellulite, um, I think I just always thought that I had cellulite on my thighs.

Let's say, um, not understanding at all that this is something totally different. This is something much greater. Unrelated completely.

I've certainly had deep awareness around the way my body looks. When I'm with a new partner, there are things that I will wear or things that I will do with the lighting or, you know, positions that I feel more comfortable being in, just in order to present the best face, you know, and even with clothing, like I've always had a keen awareness around what is flattering for my body.

and I think the reason that a lot of people in my life have told me since I was diagnosed, like I never thought there was anything weird about your shape or your skin or your legs or your arms or anything about you. It's because I dress very, and for every pair of jeans that I own, I tried on probably 30 pairs to.

Get to the point where I'm like, okay, this is going up above my hips. And it's coming in at the smallest part of my waist. These are the right kind of fabric that my cellulite, my sort of textured thighs are not showing through the fabric. Uh, never really felt comfortable in shorts. Never really did short dresses.

Definitely never wore sleeveless or spaghetti straps. Um, and even if like that's never occurred to my friends, they probably can't name a time that I'm wrong. I just have always had it on my mind, whether it's with a boy or a girl, it doesn't matter. I, I haven't wanted to be seen.

I'm sorry. I didn't think I would cry. It's rocked my confidence for sure. It's been its own hurdle and icontinue to overcome it. You know, I continue to just keep moving forward and it's definitely been a huge learning experience about myself and about how to value. Every aspect about myself that has nothing to do with this and how to value the aspects of myself that do have to do with this.

And even though there is something quote, wrong, how to see myself, not as a victim and not as though I'm damaged, but just to see myself as a whole being and as a complete person. A complete woman.

I think Americans are so fat phobic and always have been. Um, I think there's really something there with lip edema. I feel like it's in the shadows. In this really like shameful way. I think, uh, when I was diagnosed, I even had feelings like, oh, I'm not like these people, like looking at photos of people with lipedema emotionally, when you're in the category with some of the photos that you see online.

I mean, it's just heart wrenching. What these legs can look like. It's like, How could it get to this? It it's unbelievable. You cannot believe that someone would be walking around with legs like this and how much pain they must be in and how reduced their quality of life must be. And now this is what you have, and now this is your fate.

It's really been a journey for me to get insurance coverage for my treatment. But, um, it seems as though I've achieved that goal, I have not yet received the check, but, um, they have approved. The treatment and the treatment plan. Um, it really took something to get there, but, um, you know, that feels like a, a pretty real victory.

Like it's saying, this is a real thing. A lot of people have it. I have it. And I am doing this treatment to help my life, to try to have a life that includes less pain and sensitivity. And obsession and focus on these aspects of my body that I have. They've never been out of my mind for one second, my entire life.

I know that there's some sort of psychic, spiritual journey that I'm on and I just keep having forks in the road. And this is just the latest one. And all I can do is be present with each one and. The path that feels ethically and morally and spiritually, correct for me. And that's what I've done with my treatment.

And I've expanded my mind. I've expanded how I think of something like lipo section. Never would've thought that that would be a sentence that I even say, but it's where I am. 

Jamie: Thanks so much for listening to this week's episode. Kerrry Jones is a private chef who focuses on comforting nourishing, local and organic food that heals the mind, body and soul.

She offers a weekly meal delivery and also event catering in the Pacific Northwest of the United States. Links to follow her and learn more are in the show notes. As I shared at the top of the show, we will be hosting a live online event. This September, it will be our very first live event with a prior show guest.

Our theme for the series is major life changes and our special guest for the kickoff is sister Monica. Claire sister. Monica is an Episcopal nun who has a TikTok following of over 170,000. She's been highlighted by Oprah and the New York times. If you've been listening to the show for a bit, you likely remember sister Monica's story.

It was episode number 10, sister Monica grew up as Claudette Powell and in her mid thirties, she made the radical decision to leave her life as a struggling actor to join a religious community. This fall she'll share more of her personal story with us. There will be an open Q and a, and you can meet other incredible women from around the world.

Just go to our show notes and sign up for our newsletter. We are confirming the exact time for the event and we'll send out date details and links via the newsletter. So go to the show notes and sign up. This podcast is produced by me, Jamie younger, and my husband, Pete Hermans. Thanks so much for listening to, if you knew me, we'll be back with you next week.