There Needs To Be A Seismic Shift in How Some Medical Professionals See Their Patients / Mary

I think with lipedema, there’s so much of it is, all of us who had it… And I’m in a lot of online groups and stuff like that. But everybody… I didn’t find out, even existed until I was… what year was it? 2017 or 18 when I first read about it?

And the reason I read about it is that or discovered it, I was having such knee pain. One of my knees was really hurting, really… like arthritis or something. And there was one day I was leaving work, walking to the car, and walking across the parking lot. And I stepped off the curb and I just stepped wrong or something. And it was like shooting knee pains. And I was like, oh my God. And we have an urgent care, you know, it’s a college campus. So there was the health center and there’s an urgent care in the health center. So I thought, fuck this, my knee’s been hurting for a while. I’m just going to the urgent care. It was like six o’clock, six 30 or whatever. I go to the urgent care. I got an x-ray – a little arthritis, nothing major. They couldn’t really figure it out. So there was an orthopedic guy on call at the urgent care. He was so horrible to me. So horrible.

And I had to get a… What was it? They tried to get a knee brace for me. And they did not, in this urgent care. I know I’m heavy. I’m not like you have to cut me out of the side of a house heavy, but that’s how they made me feel. Cause they did not have a leg brace that fit me. And this is the medical center where our 350-pound defensive linemen on our football team are treated, and they didn’t have a single leg brace that fit around my leg. So I was like, I left there in tears just because I felt, you know, feel like deformed. And I’m like, what? And at that point I’ve climbed fourteeners 14,000-foot mountains, done the fourteeners. I was doing triathlons. Cause I kept trying to find something that would make me lose weight or have the body I’m supposed to have or whatever.

So I was like being active, doing all these things. I went to boot camp. I had a trainer, all this stuff, but my legs are fat. They are so fat. And I got home that night and I was like, how could this medical center that treats our football team, our football team goes there. How could they not have a knee brace that fit around my leg? Am I that freakishly large? And so I Googled something like why do I have fat knees, you know? Or something like that. And that’s how I found it, but it was like no doctor had ever told me I have. And it’s just the lymphatic… It’s not the same as lymph edema, although it’s related. But it’s just that the lymphatic system, the lymph fluid gets trapped in the fat cells and causes them to multiply. It’s like fertilizer for them.

But it was like, if I hadn’t Googled that, would I even know? I probably wouldn’t know that I have it. I’d probably still be crying about my physique and trying to do things and lose weight and it’s not working. And I don’t know. I don’t know. But again, can’t remember where I started with this, but it just didn’t discover it till later in life. So it’s been kind of hard to get used to. A lot of people in these support groups say that when they found out about it, they cried tears of relief or tears of joy, because there’s a reason that they never could lose the weight or get past a certain size. But I found, I had the opposite reaction to me. I got really pissed and then really depressed, because when I thought I was just fat, when I thought it was just me, even though I’m not eating more than my friends, I’m not going home, I’ve never been a secret binger eating 1500 or 15,000 calories in a day. I don’t do that, but I’ve just always been heavier.

And it pissed me off though. Cause I felt like it took hope away. It was like, yes, it’s nice to know not everything is my fault. And yes, it’s nice to know there’s a reason I look like this. But no, it’s not nice to know that dieting won’t make it go away or doing another triathlon won’t make my legs look better. That’s been hard… I still struggle with that. That’s a hard pill to take. So anyway, so I Googled it, found out about it, read a lot about it, and was convinced I had it. I had my physical with my doctor and I really do my doctor very well, but she had never heard of it, at all. So I showed her pictures and I was like, what do you think? And she’s like, well, you sure look like you have it, but I’m not. I’ve only just heard about it today. So I can’t diagnose you or anything, but she read, she was good. She read about it and was trying to give me suggestions. I went back, I was still having knee pain. How did I go back to that doctor?

It’s getting lost in my memory now. Cause I know I Googled it after I had the bad experience with the orthopedic doctor. At some point I talked to my doctor, and she agreed, I probably had it. Couldn’t diagnose me. I tried to find… There’s nobody in Northern Colorado and we’re like an hour, hour and a half from Denver. So, I was looking around Northern Colorado to see if there was, but I couldn’t find anybody who knew about it. I went back. Why did I go back to that orthopedic guy? I can’t remember. Maybe it was a follow-up or something. And he wanted to see me. And my knee was getting a little better. And I never figured out why that knee pain happened and maybe just twisted it or just something. I don’t know. But I was back at that orthopedic doctor and I told him, I said, since I was here last I’ve discovered this thing called lipedema, which I have, which explains the heaviness in my legs.

And he was just, he was such an asshole. And he was kind of like, sounds like you want to have that disease that Google told you, you have. And I was like, no I don’t. I said, but I’m telling you, this is the shape of my legs. This is what my legs look like. I’ve done… Listed all the things, the triathlons, the mountain climbing, the heights, the trainers, all this shit. I said, and I can’t. Even I lost, a few years ago, I think it was after I saw all of you in Virginia, I lost like 60 pounds. I made a concerted effort. I mean, it is possible for me to lose weight. Just more difficult than others, I guess. So I lost 60 pounds. My pants size never went down. So I got on the top half, I went from a size 20 to a size 16, 14, my bottom half was still a size 22.

So it’s like, there is something physiological here that is not normal, you asshole. But he was the worst. I send in a note to the owner of the practice because he was such an asshole. But he was dismissive and he read, ’cause I brought printouts. I want you to know about lipedema, cause I know not a lot of people know about it and it didn’t even have an IDC code until, but it has one now. Didn’t have one for a long time because it was just, I think people just thought people were fat. And so I showed him, here’s my handouts that I brought, and he kind of looks at them and he goes, “give me a break”, threw them back at me. And he goes, lose 50 pounds, you’ll thank me. And I was just trying not to cry because I always feel vulnerable in the doctor’s office anyway.

Goes, lose 50 pounds, you’ll thank me. And then he left and I think he was going to come back or something and I just got my stuff and I walked out. I was like shaking. I was like, that’s a whole other subject. I’d be happy to talk about anytime is the dismissive doctors who fat shame you. And it’s like, even if I was sitting in my house doing nothing but eating cake all day, every day, I should still be worthy of maybe getting rid of this knee pain. But he was just kind of like, I can’t do anything for you. You’re a fat, lazy slob, lose 50 pounds and maybe we’ll talk about it. So it was a long time period of multiple frustrations trying to figure out what the fuck was going on with my legs and my body because that’s the kind of attitude I was met with.

And again, my personal doctor, who’s the one who’s going to be doing my biopsy. She’s my OBGYN. But she’s like my regular, I see her for my physical every year. She’s lovely. She’s tried to learn about it. And she will say, she’s not an expert. She believes that I have it. Anyway, so after all of this, I couldn’t find a local doctor in Northern Colorado, but then the pandemic started and I realized doctors are doing telehealth now. You know, it didn’t use to be a thing, but now it’s a thing. So Dr. Karen Herbst, H E R B S T is like the world expert in lipedema. And so, and she works at Beverly Hills, of course. And so I got an appointment with her, telehealth and she talked to me for a solid hour. I had blood work, sent her blood work and test results and that sort of thing.

She was awesome. She agreed. I definitely have it. Nothing can be cured. However, and I have to get better at this. This whole year was I was in a bad way this year, just depressed and didn’t do anything but. Talked to her, I guess it was not 2020. It was 2021 when I talked to her. So it was sometime last year, her waiting list was like eight months, nine months, 10 months long just to get an appointment with her. And so I had the appointment and they send you all the pre paperwork and the tests they want you to get done and stuff. And I did all that.

So the type that I have, she said, I have a lot of fibrotic tissue, fibrosis in my thighs and hips. So the stuff I can do to manage it is I have to eat a low inflammatory diet, anti-inflammatory diet. I have a massage gun to break up the fibrosis, a foam roller also to break up the fibrosis, a vibration plate to get the lymphatic system moving. Because basically my lymph system is sluggish. So it just stagnates and just sits there. So I have a vibration plate, which broke down. So now I have to get a new one. Cause I got a cheap one. I shouldn’t have gotten a cheap one. They recommend swimming every day if you can. And actually not even swimming laps, but treading water. Cause if you can get your body more vertical, there’s more water pressure against your legs.

So just getting the legs going under the water is good. So it is good that there are things to do to manage it, but it is such a time suck. It is like a full-time job. And so I get up, go to work, come home, walk the dogs, one night a week after work, I have a voice lesson. One night a week, after work, I have chorus. One night a week, twice a month. I have PEO, which is the philanthropic scholarship group I go to. So it’s like I get it and I don’t want to do it. And that’s a struggle that I’m having is that I’m still in the pissed-off stage. So I go through phases where I’ll do all these things. I’ll tell myself, Mary, you don’t have to do everything every day, but do try to do one thing, one good thing a day, but then okay, try to add another thing and I try to do all this and then I’m just like, fuck this, and I stop doing it.

So I’m not really the best patient, I’ve discovered, but I’ve never really had to manage anything chronic before. So it’s still fucking with my head. So, that’s where I am right now. So there is hope I can at least stop stalling. A lot of people get surgery or try to, but insurance will not cover surgery for it. There’s a special name for it, which I’m blanking on right now. It’s like debulking, but it’s a version of liposuction and insurance sees liposuction and they’re like, oh it’s cosmetic. Even though lipedema can grow to the point where you are immobilized by it. And people are in wheelchairs or walkers and all that stuff.

So, the liposuction can help. However, I’m A, a surgery weenie. I don’t want to have surgery unless I really, really, really have to have surgery. And then I’ve read enough people with complications that make me really wary. There are also a lot of people who have it. They’ll have liposuction. Let’s say my biggest part is my saddlebags and my thighs. Some people have it all the way to the ankles. I have it to my knees. So I’ve got the hips, the saddlebags, the thighs, but then so they’ll have liposuction and then it explodes in another part of their body. And I’m like, I don’t want that. I’m used to the big ass thing, the thought of having surgery and then more surgery. And then I had a surgical consult with Dr. Thomas Wright, W R I G H T, he’s in Missouri. He’s one of the surgeons. There are not that many surgeons in the country who have expertise in this, because they have to do lymph sparing, not regular liposuction. So they need different techniques. I had a surgical consult with him. He was very nice and everything, but he was like, yeah, you definitely need about three or four surgeries. Each surgery is about 10 to $12,000. So I’m like, I could fight it with insurance or take out a loan or another mortgage or something. But I don’t want to, just, I’m ordinary about everything right now.

I mean, I’m in all these social media groups, people talking about the surgeons and everything. Some surgeons seem to care more about aesthetics than others, but for people who have appealed to their insurance companies and some people have won and gotten insurance to cover it, if you make any mention of aesthetics, it will not get covered. A lot of people get it covered when they have mobility issues, or they’re in constant pain. And I don’t have the only mobility issues I have is just that I’m big. And I knock things off tables with my hips because I don’t realize they’re that big. I can still walk and hike and swim. So I don’t have mobility issues that way yet, I don’t have constant pain like some people have. I know the pain that they’re talking about when I was… lipedema also explodes, gets bigger.

It’s hormone driven. I don’t know exactly how but it’s menopause makes it explode in a lot of people, which it did for me, perimenopause and menopause. It’s like my body changed completely. A lot of people, it changes when they have kids, which I never did obviously. So for me, puberty, I got bigger at puberty and then a lot bigger at menopause. Oh, stress also plays into it. So the year Dave, my first husband was sick and then he died of cancer, I gained 90 pounds in one year. I know I did not sit around and eat enough to keep that many calories. But I think in retrospect I’m like, Ooh, I bet that was the lipedema somehow growing because of stress. I don’t know that for a fact, but that seems pretty severe to gain 90 pounds in one year. So back to Dr. Herbst, I saw her, she gave me all these things to do. I should do them all. I don’t do them all. Maybe eventually I will do them all. I don’t know. I don’t know. It’s not like I’ll do all these things and I’ll be transformed. I’ll do all these things, and I’ll stay the same that I am now. So part of me is like, fuck it. Why bother?

But on the other hand, I don’t want to become immobilized. And it’s interesting just seeing the pictures of other people who have it and hearing their stories. Some people, it explodes so fast and some people are in their eighties and still chugging along. So I don’t know, but I’ve known this one woman, I knew online. She died and I never knew her well enough to know exactly what happened, but she was wheelchair-bound because of it. And then she got sepsis, and she got cellulitis in one of her legs and then got sepsis and she died. So did she die from lipedema or did she die because she had it? You know, I don’t know. So there are comorbidities associated with it when it’s really advanced, but I don’t think the lipedema itself would kill you. But other things would, part of me thinks it’s not a well-known condition.
So part of me wants to get the word out there. And I don’t think I have any friends on social media who make fun of fat people, but you never know. You never know. So just part of me wants to get the word out there. So people don’t do that. Stop being, don’t be an asshole. And people who know me and maybe like me, might realize that the next fat person they see is not worth making fun of, you know what I mean? That’s kind of why I want to say something. That’s kind of why I don’t want to say something because it feels very, like it’s not something I want to address, in a way, even to myself. The public reaction that I have gotten throughout my life as an overweight person has hurt me so much that I don’t want to open myself to that again, by even discussing anything that is reflected in my weight.

It’s like, I want people to know about it. I want them to know that not all fat people are lazy slobs. Sometimes there are conditions that cause people to gain weight, but I also don’t want to even invite that kind of discussion about me and my body in any way, shape or form. Even though I don’t think anybody would be saying mean things to me, to myself, but it’s even just putting it out there, makes me feel kind of like eeeeh. I want to get the knowledge out there about the condition, with maybe some level of empathy or if people know me, they might have sympathy about it or something. But I also don’t want anybody talking about… Thinking about my body or talking about it, or just having it being a subject of discussion is just horrifying thought. And that’s definitely something I’ve struggled with because, here are all the things you can do to help yourself, but none of them make it go away and that’s kind of mind-blowing.

It’s just so contrary to what 56 years of living before I discovered lipedema, even cancer, even though can breast cancer is rampant in my family. You chop it off. You’re better. To be fair, no one from my grandmother to my mother, to my aunt, to my sister, none of them ever died of breast cancer. So to me, 90% of the time things can be fixed. And then to have something that is not fixable is just kind of whiplash. What the hell?

The attitude that medical professionals have towards fat is so detrimental, that everybody sees it as something to be fixed or something to be cured, or there’s something wrong with you, me, if you have all this extra weight. And it’s like, you got to kind of flip it. It’s not always things that I do that make me this size.

Sometimes there are things medically that happen to me that make me this size. And I just think that they don’t think that way, the medical professionals that I’ve met, it’s never looking at anybody and thinking, why are you doing triathlons and hiking and biking and swimming and still at this weight? It’s never that, it’s always: you must be doing something wrong. And it’s just that, it’s always looking at the patient as the thing that needs fixing and the body is… I’m not explaining it well. It just feels like there needs to be a seismic shift in how some medical professionals look at their patients. And to not look at the patient and see… just somehow to be, make it more organic and look at the bigger picture. It’s like maybe the size I am, or maybe the rippling in my legs is not a moral failure. Maybe there’s something physical that is causing that and you can help with that, but they just don’t… doesn’t come across that way.