PODCAST INTRO: Hey, beautiful soul, and welcome to Dear body, I'm Listening. The podcast for women navigating chronic symptoms, invisible illness, and that daily dance between hope and exhaustion. If you've ever been told it's all in your head, well, this podcast is for you, because your body is not lying, and neither are you.
Hi, I'm Donna Piper, movement therapist, Pilates instructor and chronic illness navigator. After years of being dismissed, misdiagnosed and doing everything, quote, unquote, right, but still getting sicker, I created this space to tell our truth. Here, we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We're going to explore lymph breath, movement, self trust, latest research books, relationships, basically everything, all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
Hey, friend running low. Me too. I'm Donna, this is Dear Body, I'm Listening. We're in it together.
________________
Donna Piper: Hey, beautiful soul. Welcome back to Dear body, I'm Listening. Today, we're going to talk about the part of chronic illness that nobody puts on Instagram, and no doctor ever prepares you for the money, the dollars, the cents. And honestly, the cents with an S, because financial stress has its own smell, its own energy, and you feel it everywhere when you live in a body like ours. So this is not meant to trigger anyone or upset anyone, but you really need to be prepared for how expensive it is to have a chronic illness. In my situation, I have so many, and it's hard for me to work. Fortunately, I'm in a situation where my husband is gracefully taking the burden for now, but I want to talk about it and put it out there.
So if money stresses you out, maybe not listen to this podcast. But if you're kind of putting your toe in like, okay, I really need to deal with this financial stress that's looming in the background constantly anytime I need to make a purchase, or when I'm trying to figure out what I need to do for my health, and then give it a listen. And there's going to be some stories, there's going to be some numbers, and I'm going to give you some suggestions of how to start getting in a space where not only do you deserve rest, but you also deserve to pay, and have the money to pay for whatever you need in order to get healthy. That usually goes hand in hand. We don't want to be a burden to our families, and then we also don't want to add extra expenses. But the reality is that things cost money, so let's break it down.
Here's the truth. Being sick is expensive. I just don't mean co-pays and deductibles. I mean the whole invisible price tag. Its therapies insurance can call optional, quote, unquote, which is necessary for your well being. It's the compression garments that cost more than designer chains. It's surgery that could literally change your life, but comes with a price tag. Sometimes, the amount of a down payment on a home. So if you've ever thought that it's not just my body that's tired, my wallet is too. This episode is for you.
If you're new here, I'm Donna. I'm a dance movement psychotherapist, a Pilates instructor, and a woman living with lipedema, MCAS, Mast Cell Activation Syndrome, ME/Chronic Fatigue Syndrome, POTS and hypermobility. And not only have I fought through these symptoms, or I am trying not to fight anymore. I'm trying to co-exist with my symptoms. But sometimes, you do have to fight for what you want with different insurance companies and different doctors. So instead of saying fighting, maybe declare and stand up, reiterate, use some perseverance even on the days where you feel like you have zero energy, don't do it on that day. Wait till you're having your better energy day later on because we have receipts, invoices, and those lovely not covered letters that really could wallpaper my house at this point. Let's do this today. We're pulling back the curtain and getting real about the financial stress of being sick. I am trying to give you some tools, some scripts and mindset shifts so you can navigate it without drowning.
Real talk, no gloss, just us. Now, let's dive in.
Let me paint you a picture. If you get stressed about money, do not listen to this podcast. If you're curious about potentially the dollars, literal practical dollars that are estimates based on my experience and researching this for the last two years since I got sick, then go ahead and listen. But only listen if it's not going to give you more stress. That's one thing our chronic illness invisible bodies do not need, is more stress. But financial stress for most people is always lurking in the background. So if this is one stressor that you can begin to shift your mindset around in your physical body and your reactions to them, this is really why I'm putting it out there, and also just to talk about it. It's super expensive, that is why I advocate for a ICD-10 code for lipedema. So if it is actually an illness that's recognized universally, and a code that insurance companies can build, then potentially, this will take a lot of this financial stress off of our plates. But in the meantime, we need to be aware, be practical and realistic about how much all this is costing.
So if you finally get a diagnosis, like in my case, I finally got a lipedema diagnosis, and I was relieved, sad and angered all at the same time. But basically, the conversation went, you have lipedema, Mast Cell Activation Syndrome and HDDs high probability. So here's the deal. With the lipedema, there is really no reversal of it. There's no cure, and the best effective treatment is surgery. My insurance at the time when I got this diagnosis was Kaiser, my husband's company, and went with a different provider. Now he's with a different company, and we have different medical insurance. But Kaiser doesn't recognize it. There's really no one in the system that could refer me to. I had to pay out of pocket for this doctor. Because of all of the symptoms I have, none of my doctors, even though they're willing to give me blood tests and tests, maybe referrals, they never went anywhere, and no one really took me seriously. So that's the other thing. You may need to have 500 initial visits to get a diagnosis. Now, it's down to 350. It really depends on your area and who diagnoses you if they even want to.
Then I was like, okay, surgery. If I had to pay out of pocket for surgery, which I'm choosing to do in my area. I live in Southern California, what I was looking at for each surgery was $20 to $35,000 minimum, and that's just the surgery. And looking at four to six surgeries in the initial place that I was looking, that is a lot of money. So 30,000, 3 surgeries, that's 90,000. Plus I'd have to probably have two more additional surgeries, so it's another 60,000. That's around $150,000, right? And that's not even counting everything else. Not in that moment of relief that I had this. Then there's also like, let's get a game plan. So I started first on my mast cell because it was described to me, and which I found through my research is that, yes, a lot of my food, which was all healthy, Mediterranean diet, I did not start from a place of just eating junk food, not working out. I started a place of, for decades, my whole life, probably since I was 13, I ate very healthy, organic. I was vegetarian. I did all these healthy things. I always moved. I was a dancer. I didn't start from a place where I ate really bad on a standard American diet for 50 years. And then all the sudden, switched. I was choosing these really super healthy foods, and I was not. Not for my body. It was missed by all the other money that I had spent through the years with functional doctors trying to get to a root cause that never went anywhere.
So again, when you have to go out to these other specialists that don't take insurance, or you don't have insurance that they take, or they don't even have insurance that they would even consider taking, you're going to have to pay out of pocket, plus the surgeries. That is a lot of money. Now, let's say that if you've done your research, and if you're listening to this podcast, you are doing your own research. So looking at conservative treatments in order to get approved for surgery if you go the insurance route, you'll need to figure out how to get a referral from your PCP to an either OT or PT that handles lipedema, which usually is some undiagnosed code, or it's lymphedema with lipedema, something like that. But if you talk to your PCP, hopefully, they will find you a referral code. Then once you get over to the clinic that OT or PT is able to suggest and provide compression that is flat knit made or subscribed for lipedema patients, which is different from other compression. So all compression is not made like you can get some online alternatives, and that's what I started with.
My doctor that I paid out of pocket handed me a stack of paperwork and a flyer that said, buy these compression hose, and start wearing them. They're about $120. It was Solidea. I think I have links in my other podcast about this. So right off the bat, I spent $500 for a diagnosis. Then I had to buy some books and learn about histamine intolerance and the Swiss Institute website about their guidelines in changing my food. I probably spent about $120 just on books to figure out what to eat. Then I bought my compression hose, which is 100 and with taxes, about $127. And then I saw follow up appointments with this doctor to use a pump and everything, so there were like 295 each out of pocket. I looked for my own pump, which I found online. I just went to Amazon, the best kind of pump that was gradual for lymph flow for the same amount of money. Probably there was a sale, so it was 295. Plus I already had vibration balls that I bought before for a lymph fork, and some heating pads with vibration. I have a higher dose. I call it the hot pocket. But basically, you get in, and it's infrared light that I had before my diagnosis, that was another $500. So all of these things, they add up, right? And that's part of your treatment, because you want to get your body in the best possible place it is before you undergo surgery, in my opinion.
And then after you get the surgery, you're going to need new compression. And if you get flat knit through your insurance company, great. But they only give you prescriptions two times a year. And typically, you need to buy some more. So that's anywhere from $100 to maybe $1,500, depending on the company and what you want. So again, lots of lots of dough going out there. Then you also want to have some MLD before and after, and they run anywhere from 100 to $200 per session. So you typically need to probably, average from all of my research out there, it depends on your prescribing surgeon as well. They may require it as far as your pre op, but not always. Then also a part of your post op, but they don't always prescribe it, so you really do what they say. But if MLD is included, that's anywhere from 2 to $4,000. And then if you travel out of state, which most of the ladies have needed to travel, to go somewhere to find a doctor, whether it's in this country or out of country. So when I say in and out of the country, I'm in the US, I'm in California. And then you'll need stuff for that, like a wedge pillow probably for your recovery, whether it's inflatable for travel or just to have a new one at your house. Puppy pads for post off drainage, things like that. Maybe darker sheets for a little bit if you go home, or if you're staying in a hotel. Different clothing that is usually dark so that is comfortable, and a little stretchy.
The first few days after surgery, you have all of these things. You need slip-on shoes, so you might have to get different types of shoes, or temporary shoes. All of these things add up, the flights, the hotel, all these little accouterments that really are necessary for that. You might also need a stool to sit down depending on what part of your body gets surgery, and how mobile you are before and after. You may need to run a wheelchair, walker, things like that. So all of these things add up. I suggest that you really kind of look at all of the cost in total even though that stresses you out. Do it in a way where you do it in bits so you're not sitting down overwhelmed. But each time you buy something to increase your quality of life, this is what all of these treatments are for, in my opinion, is to give me a different and better quality of life than I currently have. That is the beauty of spending this money.
When I spend this money, I really think, okay, I'm putting it out there. I'm buying this thing, this device, having this treatment, saving this money for something that is going to drastically shift my quality of life. Sometimes, the drastic is very kind of the long game, but it does increase your quality of life overall. That's what I look at when I get stressed about money. Because sometimes, I'm like, oh, gosh, I don't want to do that. I don't want to spend all that money, and I don't want to do it every week that I'm not working right now, I'm just like a big cost, or I'm just a big expense. That stress level also doesn't help when I go to do these therapies or when I buy something that I know I'm going to need. I want to do it with the energy behind it that it's going to be helpful, and it's not creating more stress in my body. Because stress, as we know, fuels the inflammation, which then fuels all the other stuff that we have. So having chronic inflammation and having chronic stress about that, they kind of feed off of each other.
One of the things to re-regulate my system, because I have a hard time switching from a sympathetic state, which is fight or flight, that's stress that turned on to a parasympathetic, which is rest and digest system. Money fuels that system. Money will get me in that state where I'm hyper vigilant, and my system is totally dysregulated. And then I already have all these things with dysautonomia so it doesn't help. And then if you have some comorbidities, I paid for a few courses to learn about my hypermobility issues and how that can contribute to flares. There's a lot of overlap of symptoms that I have, so I want to make sure like, okay, because I adjusted a few things with my food, major things with my food, I did all these treatments, lipedema, drainage, self drainage, power plate, la, la, la, and it still wasn't shifting. So then I needed to relearn how I am in my hypermobile body, but as a larger woman with more volume on my legs than I have ever had.
If you've listened to my stories, you know that I increased a lot of volume in a short amount of time. So my strength and my load needed to change too, and also what was triggering. I had no idea that things that I just took for granted were actually triggers for the flares, for the hypermobility part. I'm not saying that I can't segment everything out. I'm one human, so I had to relearn that. But with that, there are shirts, bras and compression that helps with EDS, which are hypermobility, and that's also expensive. Every purchase, every garment I see for this stuff online is around $100, give or take. It's usually nothing really good for less. And typically, you could pay more, but you can find deals. So again, depending on how many garments you need. I found out that my fingers are really hyper mobile, so getting little splints for that, finding different tools that I need to work out. I needed to buy some new gym equipment.
Also for mass cells, some of the things I take are just over the counter supplements for H1 and H2 blockers. But again, they're 30, 40, 50 bucks, depending on how many you get for each one. Then the other supplements that I get, each supplement that I buy is anywhere from 40 to $60, so I take about a handful. I've wasted money on a lot more, but I've really narrowed it down to what I need. Also, when I buy some protein powders and creatine that helps with the collagen issue, with the EDS, the hypermobility, those are 60 plus per bag of protein. So even food isn't super affordable or inexpensive, so all of this adds up. I bought a power plate because of the hypermobility, and it was the only one that I really knew that I worked with 25 years ago when I used to train clients. They had them at their houses, and so I knew that my level of stability and what I needed is not one that really vibrates your whole body and rocks it side to side. I needed something with different progressions. The power plate is expensive, but it was the best thing for me. You can get a vibrational plate that's pretty good, probably around $300 or less. But again, you need to look at what your comorbidities are, and if it's worth it to have your body rock side to side, or if that might be triggering, if you have any sort of cervical stability. Things like that also go into where your dollar is going. So what is the best thing for your money?
I know I am totally someone that gets locked in. Even though I know that with all my research with the doctors that have been doing lipedema surgeries and doing talks on them, there's a little bit of disparaging stuff like how or why. They really don't know why. People might say, why? They know there's an estrogen component, but they can't tell you what it is, and why or what helps it. Everyone's different. They can't even really tell you how you go from stage one to stage four. Four is you always have a lymphedema component to lipedema, because it's just the nature of it. So they kind of stage it into a four. But really, there's three stages. When you talk to the doctors that really have been doing it, there's three stages. So why does someone get that? And then the areas of the body are affected differently, so they really can't tell us. But what they can tell us, and what has seemed anecdotal from all the women that have had surgery, and the surgeons that do the surgery, taking out the diseased fat does increase your mobility. That heaviness in your legs and how you feel it, that it's hard to move and all of those things that do subside, and you also have less pain. The pain might be different like, who knows when I get it done? I may always have a level of pain because I have other comorbidities that have to do with pain. But the pain will be different, and I'm looking for mobility.
All of this money that I'm spending to travel to Germany to get my surgery done, to stay in the hotels, to pay for my flights, to get all the clothing options that I want to get, to get the shoes that I want to get. I'll be going in January. I live in Southern California, so I need to get outerwear. So all of those things to me are going to be worth it. And also to my husband, because it's hard on our partners. Even though he's very loving, generous and wants me to get all the help that I need, no questions asked, I still feel that as a partnership, I am much more of a burden, and I don't want to be. That's part of the reason why I'm like, okay, the money that I'm going to spend for this is worth it to increase our quality of life. Not just mine, but to me is to be a wife and a partner, and someone to enjoy our lives with. So it feels like death by thousands of receipts. And the worst part is, even if you do, or if you are fortunate to get insurance, have a company that you're already with, or that your partners that insures you and they're able to get the insurance to pay for most of these things, it's not like you get diagnosed. You're like, okay, cool. Here's the plan. Let's submit it through insurance. Blah, blah, blah, it's going to work. No, it's usually a decline process. There's paperwork.
So again, if you're new, if you're going to look at any of these, whether it's insurance or out of pocket, just start collecting your receipts. Get a little basket, or a box, or an envelope, and just keep filing away. Or if you're not cluttered, scan it on your phone and make a folder for all of these things, so then you can go back when you really want to look at the numbers for the moment. Anything you spend, put it into a filter because it can be so expensive that it might stress you out, that you might want to say no to it, and we don't want to do that. We don't want to say NO to our health. But we have to be practical. Some people may be listening on a fixed income, and it's not an option to get surgery. So I encourage you, if you're listening before October 9, even if you listen to this after October 9, I'll put a link in the show notes to email the committee to get us recognized in the insurance coding system. The doctors have a code, the insurance companies have a code so they know what it is, so then it's not something that you have to try to figure out and overly justify when you're trying to really just manage the cost of all this. It's sad. There's a lot of conditions out there that depending on your insurance company, they won't cover. So it's not just an art issue. It is a systemic issue. That's what we're going to talk about next.
Now it's time for the connective thread where the story meets the science.
Here's where we shift gears. Real Talk gave you some numbers, and I kind of mixed it with what I'm going to be telling you now, but I want to talk about what we can actually do.
So first, let's talk about why it's so expensive. It's not you, it is the system. The US codes lipedema surgery as cosmetic because it's liposuction. It's not lipedema removal, so they're not looking at a disease fat. They're looking like, oh, you want to look thinner. So it's cosmetic because you have to go to a plastic surgeon, or certified cosmetic plastic surgeon. I forget what they are, but they have all these things. Sometimes, they're double board certified, and that's what you're looking for. So people that really do know about this and have done multiple surgeries to really help you, because, again, you don't want to spend 8, 10, even $3,000 for surgery that really isn't going to help because it's not easy to go through. So not only just the money, I mean, it's major surgery on us. So you want to look for a good surgeon, right? So if we have that code, that would help us. Also, compression is sometimes optional. But if you can get through a good PT or OT system where they are able to work with sub contractors that measure you for custom flat knit, that's the best. If for some reason you can't go to those companies directly, it is quite expensive, right?
And then sometimes, people look at MLD like, what is it? It's a massage. So then it's spa-like, so why do they need this extra massage? Well, the massage, you had a particular type, there's water, there's a few others out there, but it's specific, and it helps you push that fluid out because your lymphatic system isn't doing what it needs to in order to get that fluid out. So we want to get as much fluid out, because the fluid adds to the pain. And if you go to the PT, so if you go and say that you hurt your shoulder, or your hip, or your knee. Like, I twisted my knee, I need physical therapy. But if you're going to look at it and they look at it like, okay, there's weight. So they look at that like, okay, weight is a lifestyle choice, which in our case, it is definitely not. And so they're not looking at that as like, okay, you need this because your body is changing. It's changing your structure, which is putting extra pressure on your joints. It's looking at like, oh, you have this choice. You're not making the right choice. So maybe we'll give you a few sessions. Maybe not. But PT is so important, especially if you have any comorbidities.
Or if you've had lipedema for a while where it's, basically, you're not in a wheelchair, but you're chair bound. It's hard to walk, it's hard to move. Because then, things pool around our pelvis. We need pelvic PT. We need PT to learn how to walk when our body is different so we're not putting extra stress on our joints. We need these things to learn how to move in this larger body that a physical therapist that is trained can give you. So again, that's not always part of what we get, even though that would be the perfect plan once you get diagnosed. So in my opinion, and I'm sure there's other doctors and patients out there that have their own perfect plan, but this is my podcast. This is my opinion, so take it for what it is. Then let's go into the triage kind of map, right?
These are phases. This is not chaos or anything. But let's go into the next thing. So the first phase zero is what you want to focus on stabilizing. Focus on flare control. So basic compression, daily movement, if able. But even if you could just move for 10 minutes, doing some foot pumps, something like that. And then, in my case, because I have MCAS other than lipedema as well, I take some H1 and H2 blockers. And then your phase two is kind of like, if you have chronic fatigue, which I do, then rest is a major thing in there, and to really not overdo it. So for me, part of that stabilization phase was to really get a visible band to figure out how much energy I was expending. Because days I felt good, I didn't feel like it was any big deal. I didn't associate doing a lot of minor life skills as a major stressor. So that's for me. I had to really pare down all my food to see where these things were coming from. I don't recommend paring down food, because that's the extreme way. I am an extreme person, but I do not recommend it.
And then next phase, let's go into restoration. So we're adding, if you can add that, get that complete decongestive therapy to see how much volume you have that can be reduced, how much fibrosis you have that can be reduced. You got your compression off the rack. You start to learn how to do self MLD, and then some simple nutrition shifts. Then your next phase, let's go build, so you add gadgets. So if the vibration balls, which I didn't mention before, but I took multiple courses on the lymphatic system and things how to treat it. And so 5, $600 a course. That is up in the real talk, but I didn't mention it, so I'm putting it here. So add the gadgets, but add gadgets based on like, okay, all right.
So now, if you've been listening to my podcast, you know like, okay, so hypermobility can cause flares. How much of the shaking? So how much instability does my body really have? Where am I on that spectrum? Do I have just hypermobility? Or do I have a hypermobility spectrum disorder? Or do I have a version of EDs, which is a hypermobility version as well. So where am I on that spectrum? Because even with just regular old hypermobility, going to that end, your joints aren't stable, right? So what you're doing is trying to use your muscles in a way to stabilize your body, because it takes a lot of effort just to sit up, to stand up straight, to breathe, all of these things. So figure out what other comorbidities you may or may not have, and then start to make purchases based on what you need. So if you do need a pump, try to get that through your insurance. If you can go through your PT, like for me, the pump was denied. They're appealing on my behalf, but if my appeal doesn't go through, I have to figure out how to get a better pump that has a trunk piece, because right now I only have the legs. And if you can invest in some power plates, things like that. But swimming is really one of the best things for lipedema. Most of these conditions that I have, the POTS that I have are really, I don't really talk much about that. Because POTS, even though I have it, I have trained my body throughout my life to ignore those things. I'm trying to rope that in, but what I do for that is the electrolytes. So that's something with nutrition to give me as a nice baseline. So it helps my volume of blood in my body to increase a little bit. So there's that as well.
And then your last phase is like, okay, so you've done all the things you have, the gadgets. You really are selective about what you're doing. You're really looking at supplements or anything as something that you might need. You're also looking at any sort of more fringe therapies, which I'm all about. Because if it wasn't for fringe therapies, a lot of these things wouldn't be discovered. There's a lot of women that have like, okay, I know that there is a reason for this. And then there's some doctors that are willing to listen and be like, okay, so what is that? Let me go more about it. Or they might have a personal experience. They might have a family member, then themselves might go through something that they also couldn't get answers for so they're more open to looking at these things, and that is annoying as it is showing up all the time, and trying to get our providers, or going to a provider and really trying to figure out where that moment is, where you find someone that's listening. Or you say so much to a doctor or to a colleague if you're in the medical profession, and then they start to find their own research and do this. I'm thankful to all the doctors, the people, the patients that came before me, that have given me as much information as they have. I am grateful for the many studies that they have done. Because without having some of these studies, we wouldn't have some of the correlations.
I had to go to five different areas to kind of hone in mine. And now, at least when I first started, there was maybe one thing I saw that connected them. But now being in all these different groups, I have been making their own connection. And there's other people that are in the same things that are seeing these connections. And as we get more research, there's more people talking about it. We have shared experiences, then we start to adjust. Like, okay, so what can help us? If you have all of them or just one, it's going to be helpful. Do your research on your own body, what your own things are. I have been reading so many different women that have EDS, that have multiple surgeries because they didn't know they had it. So EDS are very hard because there's a genetic testing that your doctor has to recommend. And a lot of times, your doctor will give you the diagnosis without the official, because the genetic testing is expensive for the insurance company. They usually deny the whole thing. But go on to these different websites, see if you have most of the criteria, then try to really get a diagnosis. Again, if you're on multiple levels, but you want to know, or have at least some idea of, I don't want you to waste your money, right? This is what we're talking about, dollars and cents, so try to do some research on the front end to see if these gadgets and these things will work for you.
I love it when I come across stories that people didn't have to have surgery, and they were able to drop their weight with some GLP and other gadgets. They're cool, they're good, they're happy. They have less pain, this and that. That's not my story. I'm the actual opposite of everything, unfortunately. So surgery is going to be my option because it's the only one I haven't tried. But I love to hear stories where they reverse it, or they take their stage two down to stage one without surgery. I love that. And if that's you, I want you to do your research to find out what's going to be beneficial for you. Go, because the worst thing it is, and I've done this so many times and wasted so much money, but I can't look at it as I wasted every dollar that I spent on things. I didn't go anywhere. It actually ruled out some stuff. I've kind of like, oh, that doesn't really work for me. Maybe this is why. So I've kind of compiled a lot of personal information on all my failed doctor visits and failed root cause experiments, which there's been too many to name.
So research a lot of times. It's free. There's a lot of AI tools out there that you can use to kind of help guide you to ask, like, okay, I'm interested in this, but I'm not really sure where to go. Can you give me some credible sites? Then at least start there. Each one is like a little breadcrumb. So really look at that, and then figure out where you need to splurge and save. Pretty universally, not always everyone, but most women with lipedema really do better with flat knit, just the comfortability. Because when you have a flat knit based over the rack, something that is compression, but not flatten it, it does feel different. There's a difference, I think it's called a wall, if I'm not mistaken. Something like that, basically how the structure of the garment is. In my experience, how it feels is that the more circular, even the really good active wave that I had, which I felt was very comfortable, feels different than my flat knit. My flat knit is more supportive around that, kind of holds everything in with more of a structure, and depending if it's circular knit or flat knit. How it's built will do different things of compression.
How is my compression now? It starts from my ankles and pushes up right to the calf area where that's like your second heart, your second pump. That's universally adopted now. There is PTs, Chinese medicine, acupuncture, whatever, everyone's like, oh, the second heart is in the calves. So it's pushing up that gravity, so it's a gradual push of the compression. So for me, that's a splurge, but it's also saving me a lot in the long run. So fortunately right now, my insurance covers it. But even if it didn't, that is something I would personally splurge on. Anything that's going to help me pre and post op, and just in general is manual lymphatic drainage. So that is something that, even though it's a splurge, it's actually, I think, saving me, getting progressing in this illness, and it's helping my system the support it needs.
And then we're also looking at, where do we do it? Get a skilled CLT, PTOT, someone that has Vodder technique. Get an actual technique that's proven for MLD, have safe footwear to help you with your gait when things come unstable, or it's going to support the structure more. Things you might want to save on. Some entry level red light therapy. You might get a rebounder, which is just as effective, sometimes more effective than the vibration, depending on your other comorbidities. That's like a few $100 other than a $2,500 power plate, unless you're going to really use that. You can also try to use loaner items. There's pumps, there's different power plates, there's different braces. Maybe you could try it out before you purchase it. So look at different ways that you could save.
Let's go on to number four, which is the 10% rule. Outside of surgery years, try to cap chronic care spending at 10 to 15% of your take home pay, or your total allotted amount for that year. If you're spending a lot and blow past it in a couple months, take a pause your purchases and re-evaluate, like maybe some things do require more of your money right now. Things obviously are flexible and change. But if you're just in maintenance years, see how you can either cut down your costs, or stay within that 10 to 15% budget.
So let's look at a quick buyer's guide for number five, compression. So I am an advocate of flat knit. However, if you can't do it, you can't do it. But think of trying to get two custom pairs, and then maybe one off the shelf for a different date. So you have three in the rotation. They say that within six months of wear, wash and all of that, that it needs to be replaced. So look at that, see what your best are, and come up with a plan that's best for you. Then gadgets, which I am a sucker for. Ask yourself, will I use this at least three times a week? If the answer is no, try to wait. Maybe there's something else that you have that does work. I'm kind of impatient with what is working or not working. So then in those days where I'm feeling really down, I look at stuff. If something crosses my screen and I'm like, oh, maybe that'll work. Maybe that is the thing that I'll use more. I'll try. But chances are, if I'm not really in the stage, in the phase in this season, whatever words you like to use of me addressing that sort of concern. Maybe I want to do it later, or I thought about doing the past, but something else is a priority, I really need to ask myself that question three times before I buy something. Because 9 times out of 10, if I buy it, it just sits there.
Then exercise. So invest in something that you want to do and what you like to do. Swimming is ideal because of the different things that it does. The water helps with the lymphatic flow as well, generally, universally, easy on bodies. So maybe you need to buy a membership if you're of a certain age, like me, almost 50 or 55. A lot of times, community places are 50 plus, so they might have a more discounted rate for you. If you're a part of a pool or maybe that is something that you want to splurge on your membership, maybe you have a nice gym, or you have met some trainers that are adaptive to your needs and they could be really worth it, more so than maybe getting something at home you may not use, or any sort of trendy gear. So with braces and bras, different supports if that have a bendy body. Get something that you really like to try out. Don't be afraid to turn it. Then once you find the thing that works for, get one of those and a backup so you have it, especially if you need something where you work out and you feel better having a compression shirt on, or if you're going to be driving and you need something like a compression bra or something like that. So find what works, and don't be afraid to return if you're like, no, no, no, this really doesn't work.
Number six, funding hacks. There is an HSA and FSA. Those are some different medical discounts. If you have those plans, and many devices, and also garments, and also some supplements qualify. There's also some manufacturer assistance out there, so definitely look into that. If you're denied, or if you really need medication, see if they will work with you to see if there's a discount there. Medical travel. Ask for disability hotel room rates if you can. And if you apply, depending on what the requirements are, every hotel is different. But it doesn't hurt to ask, right? Then you can use some companion fare points. If you have any credit cards that give you travel, kind of complicated, but now with chatGPT, there are some agent modes. But that also helps you figure out your miles. Because even if you don't use AI, going to different websites can be complex. So watch some YouTube videos to see how you can really get the most out of your travel rewards, if you have any credit cards that do that.
There are also nonprofits and micro grants, especially for surgery and mobility aids. I don't know how much, really. In general, they have that for a lot of different things. See if there's anything in your area or any groups, or if you could be a part of any study. So get yourself in some communities, get yourself on some lists and just ask. They can always just say no, but there's also some medical assistance situation. So look that up in your state, you might qualify for something. Like you need to do this, but you don't have the funds, so maybe they will give you a medical loan, things like that. See what's out there. See if you can also, like I said, be part of any study. Put yourself on all those lists if you would like to get something with a lower cost, or maybe part of a future study, and then taxes. Even if you have insurance, you're going to have to do this anyway. Get used to tracking in the easiest way that you need to.
So like I suggested, you have a box, you have an envelope, you have some place where you just put all the receipts. You don't even have to deal with it at the moment. But then eventually, once a week, once a month, kind of go through it, scan things. If that's what you like, send it to a folder. Make a folder on your computer, enter these things in a spreadsheet. If you really are not tech savvy or don't want to deal with that, see if your spouse, friend, daughter, son, someone you know, aunt, uncle, someone in your family that you don't mind sharing your personal information with, and see if they can help you put it on the spreadsheet, because you want to track all of those things. You also want to track your mileage, lodging and any thing that you've paid that's deemed reimbursable. Because you may need that just to prove that you did something if you go through medical. You can always give it to your account and CPA. Things are always changing, so it could be part of your write off. However, if you have a write off, they're going to want some backup information. So just make sure you do that.
You can talk to maybe some surgeons. If they're local, maybe when you're negotiating, surgeons are hard. Some of them don't even do MLT, and they do have relationships with different clinics. So find out. Say, what's the most affordable? If there is anything where you can bundle, which you never knew a surgeon could do, you could hit them at the right time. But see if there is a way to bundle some compression and MLD with what you're getting. I know, for me, compression and what I've looked into the surgeon, compression is always, I'm going to need new ones, and that's out of pocket. That's around 800 to $1,000. I know that's an additional expense. Where I'm opting to have surgery, part of my stay, because I'm going to be going alone, is going to be in a hospital, and that's part of the MLD. I'm not going to have to do it outside of encompassing at one cost.
Once I leave the hospital, though, I'm going to be there for another 7 to 10 days after my discharge date. I'm going to go to their local MLD. There's two or three places they suggested. And so I'm going to look at cost and recommendations, and see what's the best one. So in my case, my first part of the MLD is a lump in the charge, right? So see if there's something like that. So with your insurance, let them know that this isn't about cosmetic care. It's about functional mobility, and you want to have reduced infection risk and different comorbidities. So find out what codes they need that demonstrate medical necessity. Find out what they are looking for. Make sure that your provider that is helping you with this puts in those code. For your PT, OT, ask if they have any clinical experience with EDS, hypermobility, POTS, chronic fatigue, MCAS. And then if they do, you can also just say, okay, instead of doing a per session rate, is there a way I could buy a package? Because sometimes, especially independent people will give packages if they know you're going to be there for a long time. It kind of guarantees some rate. Maybe they'll give you a discount on a package, especially if there's someone you really want to work with.
And then again, number eight, paper trail is power. So track your flares. Get yourself before and after photos. Receipts, organize them yourself or by category. This all is evidence for your appeals, evidence for grants and our tax write offs. And then have a sample budget. Everyone thinks of a budget as what you want to spend, not at which you are constricted. Say like, okay, I'm allowing myself X for this. So essentials only. This is what I want to be within. So you could do some subscription services if you have something like fullscript, if you have some sort of relationship with a provider that has fullscript, or even if you get your things off Amazon or somewhere else. A lot of times, people love subscriptions. There's a Subscribe and Save. So usually, that could save you 5 to 15%, so try to get that together and put an amount. And then your builder plans, what are some things that you might want in the future, but you're not ready to purchase now. Start to put away what that is. 10, $15 a month, till you get it to a place where you are like, okay, I'm going to bump up my essentials only. I'm going to put it in maybe more. Say, I had it at 150. I want to at least double it, because I want to be able to try some things out, or get some garments. Stack your budget.
Then for a surgical year, plan for all the things. All these little, tiny essentials, clothes, new shoes, lotions, aftercare, things that maybe you wouldn't think of. Look online, go to different threads, ask yourself what people have got, what they really needed, what they're most happy that they bought. And create yourself your own little pack. Also, if you can do that in advance and get the cost down, maybe you collect things here and there. Most surgeons now have a huge waiting list, so you may have some time. Say, I'm not going to get surgery until the middle of 2026, so that's almost like nine months. Maybe a little bit more. So every month, buy one thing that you might need, so then you can put it in that budget. It's something that you're building up towards, and you don't have to think, oh, gosh, now, I'm paying all this money out for surgery. And now, I have to pay for all these things. There's all these little things that you might want to get, so start now if you know you're going to be doing surgery at some point or something else. So the bottom line, you can create a money map that supports your body without drowning your finances. That's one way to do it. Just look at it, and see where you can get help when you need to.
Myth Buster. Less hype, more help.
Myth. If it's medically necessary, will insurance cover it? Nope, Lipedema surgery, they consider cosmetic most of the time. Compression, depending on where you get, they could say that it might be optional. Same with your pumps. MLD, oh, a massage. I don't know, could that sound like spa therapy. We're not sure. And PT after your surgery? No, it's not necessary. Again, you want to work with your providers to see what codes they have that will more likely say in that code that this is medically necessary. Not a wish or something you would like, but something that they actually need in their notes, writing these things that support that. And this is really what your body calls survival. It's really getting a better quality of life. There are a lot of things out there that you could do. But for me, it was super hidden. It's still hidden, and I haven't unlocked all these doors of all this wealth of information. And then sometimes I'm like, well, maybe I just didn't ask the questions. Or maybe my brain wasn't working. So I go back to these different providers thinking that maybe I missed something. They did have a plan, and there is a roadmap, and they are going to tell me how to figure this out.
I go back and I'm like, oh, no, I'm not crazy. They didn't realize. They're just like, no, this is what you have. And they just let you loose. So this is my experience so far, and there's thousands of other women, maybe even more than that that have their own experiences with all these things. So I encourage you to communicate with your fellow peers that have it, think they have it, and kind of see what they've done, and how they've navigated. This is like the quintessential grassroots. Even though there's more talk about it, there's still such a huge gap, and there is a big financial burden. So I encourage you to just know that it's going to cost you some money, and that has feelings with it. It could be anger, it could be sadness, it could be rage, it could be fear. It could be all of them at once. And just after you feel those feelings that are very valid and you just sit with them and be like, this is really how I feel. Then start a plan that works for you financially, and try some of the suggestions.
I want to hear your suggestions. So if you've tried something that works, share it here. Go on to different groups and share it there because it does really help. Money is one of those things. Money and food, even more so than religion and politics, get people really riled up. It's part of that survival we're hitting. And in our health, also survival. So we're all in that survival, that lower first chakra that like, okay, what do I need to live and survive? So your body is trying to survive. It takes money to throw at these things to help you with getting yourself to a baseline where you feel that your quality of life is something that you like. You can go and do the things that you want to do, and that's really what this is about. Try to give you some ideas on where to put your money, and then you need to figure that for me, out for yourself.
So because for me, it's MLD, it's compression, it's going to be surgery. I like my power plate. I like my toys. I like my workout gear. I like my supplements that I finally found. So that's probably going to change as my body changes. That's what I've found where I feel like putting my money in those areas is giving me an ROI, right? And then because there's many things that I have spent money on that there's been no ROI, Return On Investment, but I have to make peace with every dollar I spend. Again, the stress and the tension around it is going to not let me be in a state that's more optimal for healing. There's tons of research on it, the state of how you are, how you receive, and where you are to get healing really does matter. It's not just woo. It's not like positive talk. You really physically want to get yourself in a state where you're in a place to receive, and your cells are going to places in your body. Your energy is going to different places where it is creating these pathways of parasympathetic stimulation, not sympathetic stimulation. Once the parasympathetic comes on the spider flight, that's what turns off the rest and digest. So we want to get ourselves back into rest and digest in all areas.
Thinking about financial stress does really alleviate some and it's real concerns. It's not just like, oh, think about it, if you have a fixed income, you have a fixed income. If you lost your insurance because you lost your job, these are all very real things. I'm not having you take this lightly, but feel the feelings around it, and then look at things from a different perspective. When you're being more logical, use both sides. Where as humans, we have all these different sides. Use your emotions and validate them, and then make decisions based on dollars and cents. And the sense of S-E-N-S-E is what makes sense to you. What is your best investment? Where are your pennies and dollars going to benefit you from something you like? Because if everyone says, swim, swim, swim, but you hate swimming? Then don't invest in a membership, a bathing suit and all the things that you need to go swimming. Invest in something that you would want to do. Look at these things with a more like, not just other people are getting, because I have fallen prey to that too. I really am like, oh, well, they're doing that, and that's working for them.
I have to sit back and be like, well, if I bought that thing, would I use it? Is it anything that I would remember to use? Because you have it lurking in your home or somewhere in a cabinet. I have bought many things that I don't use because that's not either my priority or it's something that I don't even resonate with, that I would use it. I either need to invest. There's only so much energy we have with all these chronic illnesses, and there's almost so much time. So you can spend most of your day doing all these different things. Do five minutes of this, 20 minutes of that, X, Y, Z. But the reality is we don't do that. We do the things that are going to resonate with us, but also feel like we're there. We're doing something, and there's only a few, limited, so don't buy 50 things. Start with something, if you're new to this, and buy one and see how you do it. Or rent it, or do it on a loan. A rebounder, those are very effective for a lot of people.
Find a place that has a rebounder. See if you go use it, see if you like to jump on it. Maybe it scares the bejesus out of you to jump, and you would never do it because you don't want to bounce something. Maybe you live in some place where you're afraid of noise above or below. So many other factors that go in other than these people use it and it works. You have to see if it works for yourself. Then if it is, and it's something you really want to do, then invest in it. Use your dollars wisely with things that matter to you and not to anyone else.
The next thing I really want to talk about is our Feel Good Flow. Money stress doesn't just live in your head. It lives in your body. It's in your jaw, you clench when another bill shows up. Or if you're not sure if you want to pay for this thing that you know will make you feel better, but you felt like you've been paying too much. It's in the shoulders that creeps up towards your ears when you think about the expense. It's the shallow breath when you whisper, how am I going to pay for this? So let's release some of that right now. Start by sitting or standing with your feet grounded. Take a slow inhale through your nose. And on your exhale, let your lips buzz like a hum or a soft raspberry. That vibration tells your nervous system that you can soften down. Do it two, three more times. Inhale, then buzz with the exhale. Inhale, and buzz with your exhale. And again, inhale and buzz with your exhale.
Now, roll your shoulders up towards your ears and hold them there. This is what your financial burden feels like in your body. Now, drop your shoulders with an audible sigh and let gravity take the weight. Next, put one hand on your chest, and one hand on your belly, and whisper after me, I'm not my bills. I'm not in debt. I am worthy of care. And say it again this time. Imagine the words rising down or changing them. Imagine the words rinsing down your spine, washing out any guilt, shame, nervousness, fear, anxiety, dread, anything that comes along with it and say, I am not my bills. I'm not in debt. I am worthy of care. And now, if it feels safe, let's shake it out. Start with your hands, flick your fingers like you're shaking off water. Then add your arms, your shoulders and your legs. Just be sure that if you're hyper mobile, that you don't shake too vigorously. Just let your body, just shake it out. Let your whole body jiggle, bounce, tremble for about 30 seconds. No right or wrong. Just imagine shaking off the weight of every expense, every not covered letter, every dollar you didn't have to spend, every dollar you didn't want to spend, and then stop, stand still, feel your feet on the floor. Take one last deep breath, exhale with a sigh. And just for the moment, just let your body feel free. Your body is free. Your body is already caring enough. You don't have to carry the stress of money on top of it.
So remember to rest when you can, ask for help when you need it, and do this little movement anytime before you make a financial decision. Get yourself in a state where you feel the feelings, and then you shake them out, and you're clear. So the clearer you are without the lens of emotion about money, whether it's fear, or dread, anger, anxiety, whatever it is, then you could start to look at like, okay, what's going to be best for me? Where am I putting my money? Then you can come back and get yourself on a plan. We have to start baby steps, and start anywhere along the process that feels good for you. And again, never listen to anything that's going to make you more anxious, including this podcast.
This is shared education and lived experience, not medical advice, and is not meant to be. Check in with your body, check in with your clinician and find out what fits your life.
Here's the truth, chronic illness doesn't just drain your energy, it can also drain your bank account. The system is not built to protect us from that reality. There's not a lot of resources out there for us, and insurance doesn't really help us out. And the things that we need can be pretty expensive. You don't have to believe this, but what I believe and have had to practice myself, because I'm not doing this podcast because I haven't, it's a theory. I have had to actually do all of these things, saying the numbers out loud, naming the stress and breaking the silence. It's a small rebellion, and it does help you come into grips of what is important, and what you really want to be doing. It grounds you in your own healing, and it gives you back some control when our health is in anyone else's hands. And it's not actually benefit us. That place sucks. I've been there many times. I've seen family members in those places with different illnesses, and it sucks.
Just by doing this, as far as our finances and where we want to put our time, energy and our money, by expressing this, it does help. The whole point of this is to make the invisible visible with not only what the illnesses are, but all the other things that come with it. And when we do that, when we stop feeling so alone, or we start to express what we are afraid to express, then we start to feel a relief, that we have to do it multiple times. It's not just once, but that's the process, that's the beginning. So if this episode landed for you, share it with someone that you might think needs to hear it. Send it to a friend who's maybe juggling the same medical chaos and the same receipts. Let them know that they're not alone, and no one is carrying this load alone. We all have our own struggles. They're all a little different. However, we all can share some of the same stresses, and even that commonality will make it feel less stressful.
If you want some more information, any more tools or the occasional rant, come out and hang out with me on Instagram at Donna Piper. Until then, take care of yourself out there. Rest when you can, and ask for help when you need it. Bye for now.
