Jaelin Palmer is a 25-year-old activist and organizer living with CRPS (complex regional pain syndrome, or reflex sympathetic dystrophy) and TN (trigeminal neuralgia). She was diagnosed with CRPS at 15, following a jaw surgery gone wrong; the TN diagnosis came much later, despite her extreme chronic facial pain. Her mother, Natalie, joins us in this special mother-daughter interview not only because she is Jaelin’s full-time caregiver, but also because we so value her perspective as the loved one of someone living with chronic invisible illness. Both women have gained and lost so much in the experience of living with and striving through chronic illness, and have a wealth of knowledge to share. Jaelin is a happy, social individual, committed to a number of causes – but chief in her interests is LGBTQIA inclusion and awareness (she and her sister McKenna founded the Yucaipa Rainbow Coalition), as well as chronic illness activism (especially with groups like Fight Like A Warrior). In their journeys, mother and daughter have learned what it means to be an advocate – both for oneself and for others – and sat down with Lauren to enlighten listeners with their message of hope, love, and strength.
Key links mentioned in this episode:
Tune in as Jaelin & Natalie share…
- that Jaelin had jaw surgery to fix an underbite – and it was this surgery that caused her TN and CRPS
- Jaelin’s ambition to succeed and to learn: that she was in too much pain to finish high school, and had to transition quickly to home schooling in order to get her diploma
- that both Jaelin and Natalie experienced medical trauma in having to explain Jaelin’s pain and constantly relive her story in the early days of her diagnosis and treatment – but they’ve learned how to better communicate with doctors since then
- that at one stage in the process of diagnosis, one doctor made the outrageous recommendation that Jaelin (then 16 years old) lose weight to calm her jaw pain
- that there are 50 million people in the US living with autoimmune disease – more than with cancer and heart disease combined
- one of the main reasons autoimmune disease research is most likely misunderstood and underfunded (and patients are often first referred to psychiatric care) – because the majority of people living with these illnesses are women
- Jaelin’s acknowledgement that Natalie was “ferocious” in the push for her care
- that Jaelin graduated magna cum laude from college, and would like to go to law school – but is limited by her illness
- that pursuing healthcare with chronic illness is a full-time job
- Natalie’s recommendation that adults teach their kids the process of participation in one’s health and insurance needs
- the discovery that Jaelin’s jaw surgeon had knowingly damaged nerves in surgery – which left her with lifelong chronic pain – and she was beyond the statute of limitations to sue for malpractice
- that Jaelin had a second surgery to improve her comfort levels
- that Jaelin weaned herself from opioids as much as she could during a fellowship in Washington, DC
- the importance of registering with university disability offices to take advantage of opportunities to reschedule tests, etc – which are a student right
- why Jaelin is upfront in communication with professors and other figures of authority in her life
- why CRPS and TN are both nicknamed “the suicide disease” – because both rank in pain above childbirth, and roughly 25% of patients take their lives because of the pain
- that Jaelin had her gallbladder out, but didn’t even notice the pain because as it compared to her facial pain…the gallbladder was barely a blip
- that Jaelin lives through moments of doubt, questioning her sanity AND her identity because of her chronic pain
- that Jaelin has Type 2 TN on both sides of her face, and as such is not a candidate for microvascular decompression surgery
- that Jaelin is currently seeking treatment with doctors at UCLA and at the Mayo Clinic
- that Jaelin helped plan LA’s inaugural Autoimmune Walk, along with Barbara and Haley Ramm
- that the first thing Jaelin does every day is check in with her online community
- that Jaelin struggles to make ends meet because of her disabilities
- tip tops not only for patients, but also for caregivers and loved ones of individuals living with chronic illness
This episode is also sponsored by Embr Labs, creators of the Embr Wave.
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Lauren: All right guys, thank you so much for joining us. I am here today with Jaelin and Natalie Palmer. Jaelin lives with CRPS and trigeminal neuralgia, or TN, and is also an advocate for these illnesses. So thank you for joining us. And Natalie is her mom!
Jaelin and Natalie: Thank you for having us. Thank you so much!
Lauren: It’s such a pleasure to have you both here. You just came from a checkup appointment with your neurologist, right?
Jaelin: Yes, I was at UCLA’s headache clinic.
Lauren: Wow, okay. And this was a new doctor that you were referred to, as well?
Jaelin: Yes, I had been to UCLA’s neurosurgery clinic. And so they had just referred me to the headache clinic, which was a little different, but I got a lot of new information. So that was very helpful.
Lauren: All right, we’ll probably end up getting into that as we continue to chat.
Jaelin: All right.
Lauren: Why don’t we start from the beginning, though. Can you tell us when and how you were first diagnosed with these illnesses?
Jaelin: Sure. So, I was a very healthy, normal child. When I was in ninth grade, I had a surgery … okay, so my mom has an underbite. She had an underbite and cross bite growing up, and she had a surgery to fix that.
An under and cross bite is basically when your lower jaw grows out and to the side. It’s a very common thing that people have. A lot of people have a surgery to fix it when they’re done growing.
With girls, that’s usually somewhere between 15 and 18. With boys, it’s usually older, somewhere in their 20s. And so I stopped growing when I was 15. They X-rayed my hand, they saw that all of my bones were fused. And so they went ahead and did the surgery over the Christmas break during my freshman year.
Lauren: Freshman year of college?
Jaelin: High school, I’m sorry, during my freshman year of high school.
Lauren: Don’t worry, I’m here to fill those blanks in!
Jaelin: And to clarify! And so they told me it would be a two-week recovery, and I’d be right back to high school — no problem. That was certainly not the case. I had that surgery, and I was in horrible, horrifying pain afterward. And we kept going back to the doctor, and he said, “You’ll be fine. Some people just have a little more pain than others. You’re just going to heal right up and everything will be okay.” And we trusted this doctor.
He was the only surgeon in my area in the Inland Empire in California. He was very well respected. And so we trusted him. And it turned out we should not have.
Lauren: This is always the first lesson in Chronic Illness 101, isn’t it? Some doctors are not your doctors.
Jaelin: Yeah. Over the next year, we continued to see this surgeon. We kept going back for checkups, and he kept saying, “Everything is going to be okay.” He had us checking in, he kept prescribing more medication. And after the year was up, and during this year, I could not go back to high school … I had to finish the last half of my freshman year of high school online. And then that summer, the school district said … you either come back to school or you’re a truant — we kick you out. There’s nothing you can do.
Lauren: That’s accommodating of them.
Jaelin: Yeah. And it was interesting, because …
[The school district] didn’t offer any sort of homeschooling — because I didn’t have cancer or anything like that; I didn’t have a disease they knew how to deal with.
I was just in pain from a surgery. And that wasn’t something that the school district knew how to deal with. And so they said, come back to school or you’re a truant. And so my mom figured out a way to help me through it; she figured out how to help me take the California High School proficiency exam. And so that’s a way to get your diploma — not your GED from the state of California. I was a child actor. And so my mom, with the help of an acting friend, enrolled me in our acting friend’s “homeschool”. I was a sophomore in high school — because you have to be a sophomore in high school to take this exam. So I was enrolled in this “homeschool charter school”. So I was then a sophomore. And I studied for this test for months. I got a tutor and I studied, because this test goes way higher than a GED test in math and English.
Lauren: So you were able to use this diploma, then, obviously, to go to college?
Jaelin: Yes, it’s equivalent to a high school diploma. Instead of saying it’s from certain high school, it just says it’s from the state of California. So I went and I took this test …
Lauren: It’s amazing that you were able to figure this out, Natalie.
Natalie: If I’m not a researcher, I’m not anything. That is one thing I do — I figure stuff out.
Lauren: Well, especially where your daughter is concerned … it sounds like you’re a mama bear. So you definitely jumped in there.
Natalie: You’ve gotta do what you gotta do. For sure.
Lauren: So you took this exam …
Jaelin: And I passed. Like I said, my mom has always been someone … whatever I need to do or want to do, she always figures out how to help me. So she figured that out. I passed that exam. I graduated high school. So, I went ahead and started at my local community college where I could take classes for two-hour chunks at a time. So that way I could go to school, come home and rest — which was much more convenient for my pain.
Lauren: In the sense that your pain was fatiguing you, but also to manage the pain, sort of in bursts?
Jaelin: Yeah. And also, if I was in a classroom and I was in so much pain that I was, for example, going to throw up, I didn’t have to — like when I was in high school — put up my hand and be like, “Excuse me, can I leave the room?” In college, you just go, obviously. So I could just run out of the room, go to the bathroom, do whatever I needed to do, throw up, take a pain pill …
Lauren: So this was you life … being sick from this pain.
Jaelin: Yeah …
I was just in horrible, horrifying pain.
Lauren: Was it mostly jaw and head, as well?
Jaelin: Yeah, it’s my jaw and face. And so, during this year, we kept going back to the surgeon. And after a year, he finally referred me to a pain specialist.
Natalie: I just want to say something … it’s like, if you have a toothache, it is the most annoying thing in the world.
Every time I get a toothache, I think: she lives with this every day, every year, the next day, the next day, the next day … but it’s all over, like, all your teeth. I just … I can’t imagine.
Lauren: It’s interesting when you say that. Look, I haven’t given birth so I don’t know what that kind of pain is like. But I’ve talked to my mom about varying levels of pain that she’s gone through and things that I’ve been through, and I honestly think that a toothache is one of the worst pains in the world. When it’s really severe, like it’s an impacted tooth or something like that. So it’s amazing … I mean, Jaelin’s sitting here with her mom, and she’s like: “No problem!” (laughs) “Life’s peachy!” But … it hasn’t been easy to get here, either.
Natalie: No. I think at some level, you just start to almost be robotic about explaining it. Because that’s your life. She has to give those details so often to doctors. And it’s just rattling it off, at this point.
Lauren: Yeah. And is it traumatic for you to re-live all of this stuff over and over again, when you’re meeting new doctors?
Jaelin: I think at the beginning, it was. I think at the beginning, there is a lot of tears, and there was a lot of internal pain that came with telling it. But I think over time, I’ve had so many doctors and so many people in general ask me about it. And I think there’s so much power in sharing your story and creating awareness about it, that at some point …
I had to create an emotional distance from it where I could tell the story without creating the emotional attachment to it every time.
Lauren: And that’s another lesson in chronic illness, isn’t it?
Jaelin: Yeah. And it was helpful, being able to tell people your story and being able to tell them what you’ve been through and explain to them what it’s like; I think helps raise awareness for it. I can’t break down crying every single time, not only because it’d be too much emotionally for the other person, but also because it causes more pain for me if I’m crying.
Lauren: Well, it sounds like you found a way to work through it emotionally. That you’ve turned it from something negative into something positive; that you’ve turned it into the awareness raising and the work that you’re doing — which, of course, we’ll get into.
Jaelin: He referred me to a pain specialist.
Lauren: And how old are you? How many years post-surgery was this?
Jaelin: I’m 16. So, it’s about a year post-surgery. And from the surgery, my face is still kind of weirdly swollen. They tell you, a year after, the swelling goes down. But my face still was kind of weird looking. The swelling never really went down all the way …
Natalie: Which the doctor just said, “Well, you’re overweight, aren’t you?”
Natalie: I know, that was so rude.
Lauren: Well, this is the most shocking thing, because I feel like it’s only women who are on the receiving end of comments like that from medical professionals.
Jaelin: And I was not overweight before the surgery, I’d like to point out.
Lauren: You’re not overweight, period!
Jaelin: But within a five-year span, I gained 100 pounds after the surgery.
Lauren: Of course, because how could you exercise and be mobile and be like a young, active person?
Jaelin: Yeah, because I was in so much pain, and they put me on so much medication that slowed down my metabolism. But before the surgery, especially right after that surgery where my jaw was wired shut for a week, I was not overweight at that time also. So that was just rude to begin with, because it wasn’t true.
Lauren: It’s so presumptuous. It’s also a presumption that anyone who’s a certain weight is unhealthy, as if it’s not the body’s normal state.
Natalie: Yeah, she was 16 years old, right?!
Lauren: And how can he say that to a 16-year-old and I’m not give them any —
Jaelin: I’m a 16-year-old, 5’ 8”. I’m just a tall kid, so it was just ridiculous to begin with. But, so — I got referred to this pain specialist. In a few years with them …
I’m diagnosed with complex regional pain syndrome (CRPS), which is an autoimmune disease. That means my nerves attack themselves. So basically, my nerves don’t recognize that my bones healed. So my nerves every day fire off as if all of the bones that they cut during that surgery — they made eight cuts during that surgery and they screwed them all back together — they all still fire off as if all those bones are still broken. So they never fully heal from that.
Lauren: Right. So this is why you deal with pain in your face and jaw from the surgery. And when you say it’s an autoimmune disease, does this mean that the surgery itself, or possibly the medications that you took afterward, triggered this autoimmune condition … like, you had a predisposition to it genetically, somehow?
Jaelin: So, women in general are more likely to have an autoimmune disease. And traumatic events trigger autoimmune diseases.
Lauren: And any number of traumatic events had unfolded since this surgery.
Jaelin: Yes. There is no cure, and there is not enough research for autoimmune diseases.
There are 50 million people in the US with autoimmune diseases — that’s more people than with cancer and heart disease combined. Yet there is virtually zero research being done, and zero money being put towards this.
Lauren: Do you think it’s because 70% of people with autoimmune diseases are women? Do you think that’s the reason that the research is underfunded?
Jaelin: I think that’s a big reason why, and …
I think it’s a big reason why most women who are diagnosed with autoimmune diseases … they’re first told to go to psychiatric care.
And it takes them a long time to get diagnosed with autoimmune diseases.
Lauren: That happened to me!
Jaelin: I was very lucky at the time. I was a very specific case. I was young, I was white. I had a mom who was very ferocious about my care and was going to make sure that no one was going to shove me under the rug.
Lauren: I love it, because your mom is sitting here, super calm … but I can only imagine you would, like, eat them for breakfast if they messed with your daughter!
Natalie: Well, I’ve said to doctors before, “We’re here for your help. She’s not a pain seeker. She graduated from college magna cum laude. She wanted to go to law school. The girl you see sitting here with no makeup on, in her sweats, is not some pain seeker here to be shoved under the rug. What if this was your daughter? What if this was your granddaughter? We’re here for help.”
And oftentimes, we fall into tears, and like it or not, that helps men soften towards you. But sometimes, we stay strong and and I’ve learned to just ask questions and keep going and keep pushing them – until something’s done. And not just say, “Okay.”
Lauren: Do you think that’s because of your journalism background, too?
Natalie: Maybe! I ask a lot of questions. Every question begets another question.
Lauren: So everyone needs a mom who’s been in journalism?! (laughs)
Natalie: (laughs) I think the mom instincts kick in, no matter who you are.
Lauren: Absolutely. But obviously, you two have remained very close. And you’ve advocated for Jaelin from the very beginning, it sounds like.
Natalie: Yeah, I’ve had to do that. And I’ve even surprised myself because I feel like I’m not a conflict person. I’m not that person who’s, like, “I want to speak to the manager!” I’m just not that person. But in doctors’ appointments and stuff, I don’t have any problem being that person. Because I want her to feel better! And it’s just trying to keep a positive attitude through all these years … this next thing is going to help, this next thing … Like today, we went to this pain clinic and saw this doctor we’ve been waiting for six months to see. We learned something. It wasn’t a cure-all, but we keep thinking the next thing’s just right around the corner. And you have to keep pushing for that.
We’re way outside of the boundaries of our insurance, but we just ask and we follow up …
Jaelin: My mom always says: The squeaky wheel gets the oil.
Lauren: Absolutely. Well, isn’t that the thing? I think another lesson that we learn in the world of chronic and invisible illness, especially when you’re female, is to push for more. Knowing that you have to make the follow-up calls, they’re not going to follow up with you. Knowing that you have to ask for the cancellation appointment so that you can get in sooner. You have to ask for the additional insurance coverage. I don’t know about you, but I’ve had to threaten my insurance company before because sometimes they just take too long to approve certain things. It’s always about continuing to follow up, and knowing you’re in the right because you deserve health care.
Natalie: It’s a full-time job.
Jaelin: I always say I could have a 40-hour-a-week assistant just to make refills and call doctors’ offices and call insurance offices. It’s impossible to do all of it and have a chronic illness.
Lauren: And imagine if you’re someone who doesn’t have a support system. This is where the importance of a support system is so clear, isn’t it? That if you were a patient who didn’t have this kind of help, and you didn’t know where to reach out, you’d be stuck, wouldn’t you? You’d almost become a hermit.
Natalie: It’s also important to to learn it as you go, though. Because once they turn 18, some offices won’t speak to me anymore. Being a girl, I can say I’m her sometimes. But I also have three other kids; I have 20-year-old twin boys, and I’ve been needing to make some appointments for them. I obviously can’t say I’m them. And so it’s frustrating as they get older that you can’t help, so it’s good that they learn it.
For anyone younger, parents with younger kids … you also have to teach them the process, because at 18 they’re not going to tell you when the appointment is or get the refill.
Jaelin: Because when I was younger, at the beginning … for some reason … I’m a very loud, outspoken person. I always have been. But in doctors’ appointments for some reason, I would just close up and I would talk very quietly, and it was something about the vulnerable state of talking about my health and my pain, and crying all the time.
Lauren: Was this before your diagnosis?
Jaelin: No, it was after the diagnosis.
Lauren: It was a white coat syndrome that set in, almost?
Natalie: I forgot about that. I would say, “Why are you acting like that?” Because it’s not even your personality.
Jaelin: Yeah, I would just get very quiet and I would talk very quiet and my shoulders would just close in. It was so unlike me. And my mom would be, like, “What are you doing? Tell them!”
And my mom had to teach me as I got older how to do things and how to talk to people, so that when I was 18, I could completely take over and care for myself and advocate for myself and my own appointments.
Now I’m 24 years old and I can do all those things for myself. But I’m still so grateful for her, because even the other day we got a bill for the ER for $3,000, and it was because my health care group number changed.
Lauren: Did they tell you about that? That’s great.
Jaelin: No. And I didn’t have to handle it at all. My mom just completely figured that out, and I just kept making my other appointments.
Natalie: I called them and they said, “We only bill once. It’s your responsibility now.” And I said, “Well, if you’d like to get paid, I encourage you to bill twice.” And they did, and it’s all taken care of.
Lauren: It’s learning those ways to be just aggressive enough, isn’t it? Okay, so where are we in the story? You, at this point, were taking college classes?
Jaelin: Yeah. So I’ve been diagnosed with CRPS. And at one point during this time …
My parents figure out that that original doctor screwed up during my surgery. We have seen orthodontists, neurologists … we’ve seen every specialist you can see. And we basically figure out that we have to do the original surgery all over again.
Lauren: Now, was it one particular doctor who mentioned to you that something might have been off?
Jaelin: How I remember it, it was sort of a collective realization of a lot of things, and just realizing that he damaged nerves that shouldn’t have been damaged.
Lauren: Was it something like malpractice territory?
Natalie: Yeah, but we were too late on that.
Jaelin: The thing is …
He waited a year to refer us to a pain specialist. And it turns out, a year is the malpractice statute of limitations to file.
Natalie: I think how we found out that something may have been wrong was, he said: “Nobody has pain from this.” And I think we got to a neurologist and they said, “We have people in here all the time that had that surgery.” That something goes wrong; it’s very common.
Lauren: And did their doctors also wait the year out, as well?
Jaelin: I don’t know. But the thing is, he’s the only doctor in our area. He priced out everyone else. He’s the only doctor in our area. So when he said he has people in there all the time … he’s the only doctor in our area. So they’re all coming from him. And so we were, like, we need to sue him. Because If he’s doing this and not telling people, that’s not fair. And we saw a lawyer, and he said: “He waited until the statute of limitations was up; you can’t sue him.”
Lauren: He clearly doesn’t even care about the fact that his patients are in pain.
Natalie: No, he doesn’t care at all.
Lauren: Isn’t that disgusting? This is a failing of the medical system, absolutely.
Natalie: That you can price out another doctor. And you live in a small area, and [are] the only one who does the surgery. You don’t even have a choice between two doctors to have surgery — and major surgery, where they rip your face apart and nail it back together. It’s pretty scary.
Lauren: Wow. And he’s still practicing?
Natalie: Oh, yeah.
Jaelin: And there’s nothing we can do about it. If we go on and leave reviews online, we just sound like crazy people. Or just bad-mouthing.
Lauren: Are you one of many people doing that, though?
Jaelin: I mean, there’s been a lot of things that go on … we would sound like crazy people if we do it.
Lauren: It’s also, I suppose, more traumatic for you to hold on to that and not be taking care of what you’re dealing with now. If you’re focused more on a thing that happened that you can’t change … than on correcting what’s going to happen in the future, where would that put you mentally, as well?
Natalie: We’re definitely always moving forward.
Jaelin: Basically, I was going to college and the last semester before I had to have the surgery over again, I had been sleeping in a reclining chair for about two years, because I can’t lay flat down — the pressure on my face is too much. So I sleep downstairs in a reclining chair. So I have no private space anymore because I have to sleep downstairs. And the semester before I have the surgery again, all I can do is eat, sleep and go to the bathroom. I have to take a semester off school because that’s literally all I can do.
I’m a one in a million case three times over.
Because they X-rayed my hand before the first surgery to make sure my bones had fused, and somehow I still grew a half-inch after that surgery. And my jaw took on a rare growth pattern that less than 1% of the world’s population has. It grows down and out, so it’s pulling on muscles and fracturing bones as it’s growing. So my orthodontist, how we figured this out … he took every X-ray over these five years and just put them next to each other and he saw the growth pattern.
Lauren: But he made the effort to do that.
Jaelin: Yeah, I have an amazing orthodontist in in my area, that’s a really great guy. And he figured it out. And then they also thought at the time that I must be allergic to the titanium, which so few people are allergic to, that they used to screw all of my jaw back together. So this time we went to UCLA and we had the head of the maxillofacial surgery department do the surgery. And this time, since they used no screws or any metal to screw my jaw back together …
My jaw had to be wired shut for six weeks. Which was horrible.
Lauren: Yeah, especially for someone who’s really verbal, too. That’s six weeks of not really being able to talk, to communicate.
Natalie: That’s old school. That’s what I had, too, in the ‘80s.
Jaelin: Also, you know what was really horrible about it? I just about had my Associate’s Degree in American Sign Language. But no one else in my household knew American Sign Language! So I could sign, but I had no one to sign to. So my jaw was wired shut, and I was, like, if someone else just knew how to to do sign language, I could still communicate. But no one knows sign language!
Lauren: It’s very interesting that you ended up getting a degree in signing. Because it’s another form of communication, and people who live with another invisible condition. So you’re really providing support for those people. But you needed that support at that time — when your mouth was wired shut!
Natalie: But the worst part is starving.
Jaelin: Yeah. I had a blog at that time. It was called JawSurgeryPain.com; it’s not live anymore. But at one point, it was pretty popular in the facial pain community. And I was blogging all the time about this, and we have a picture of my whiteboard at one time, and it says: “I would seriously injure someone for a slice of pizza right now.” At one point, we started blending slices of pizza. And I would just stick it through the back hole, where my wisdom teeth used to be. At one point I broke a piece of the plastic that was holding my jaw together right, and to this day my jaw doesn’t completely shut on one side because of that broken plastic.
Lauren: From that one bit of pizza!
Jaelin: Yeah! You’re just so hungry!
Natalie: People think you can just have milkshakes, but it’s not just like your teeth are wired together. There’s big pieces of plastic keeping the teeth, and then they’re wired. So it’s not like you can suck anything through — just liquid.
Lauren: Do doctors prescribe a diet?
Jaelin: You use Ensure, but you get so sick of Ensure! There’s a long syringe that you feed through the very back hole, where your wisdom teeth used to be. And so it’s a syringe, but what happened to me at one point … all your medication is liquid … and so at one point, I was getting so much medication and not enough Ensure that my stomach was burning up, too. So it was hurting my stomach to eat anything with the medication. And the best part was that my antidepressant at the time — it had little balls inside the pill and so we couldn’t break it to put it in my syringe to inject it. And so the ball just kept sticking inside the syringe.
So cold turkey after my surgery, I had to quit my antidepressant as well because we just couldn’t get it in a liquid form to get it down me.
Lauren: And also, no wonder you needed an antidepressant at this point, too.
Jaelin: Yes. And also, can I just say … I’m glad I had the second surgery, but if I knew how bad that second surgery was going to hurt, I probably wouldn’t have done it. That second surgery hurt so badly. I was in the hospital for a week-and-a-half after that second surgery. It was the most painful thing ever. I had a morphine drip that entire time I was there; it was the most painful thing I’ve ever felt in my life. I don’t think I can describe to anyone how painful it was.
I’ve never given birth, but it had to be more painful than that.
Natalie: And shout out to UCLA. They were great; it’s a great hospital. They care about pain. We’ve been to a lot of hospitals, and they ask you what your pain level is, and they treat pain. I’ve never seen anything like it, since or before.
Jaelin: After my first surgery, actually … this is something we talked to the surgery center about after my jaw was wired shut … after the first surgery, this lady came over and asked, “How are you doing?” And I couldn’t speak, obviously, because my jaw was bandaged shut after the first surgery, and she was, like, “Honey, you’re coming out of the anesthesia, you need to talk now.” I was, like, “Er, er …” And she was, like, “You need to start speaking now, honey.” And then another nurse came over and nudged her and said, “Look at her chart. Her jaw’s bandaged shut.” And I was just sobbing. Because I was in pain. I couldn’t talk and I was trying to say, I wanted my mom. At that time, I was 15. I’d just had my jaw shut. I just had a horrific experience with the first time. The second time, I was in so much pain. But at least I had a good hospital.
Lauren: And it sounds like you haven’t come up against … or perhaps you have and we haven’t gotten into it yet … but have you come up against any roadblocks with opioids, as well?
Jaelin: Well, we’ll get there! But yeah, so after the second surgery, I was able to function better. So I had the titanium out, my jaw was put back into the right place. I immediately got my degree in American Sign Language. I transferred to California State University, Northridge. And there I actually got this once-in-a-lifetime fellowship, where I moved to DC, and I worked for Congress. It was incredible. And when I got back from DC, I weaned myself off as much of the opioids as I could, in order to still function. Because I was so driven after I’d been to DC. I was, like, ‘I’m going to make this work. I’m going to do this.’ I was so driven. And while I was in college, even though I was in pain every single day, I was head delegate of the Model United Nations team. I was Chief Policy Advisor to the President of our student government. I was an officer in my sorority. I did a fellowship with a nonprofit. I graduated magna cum laude. I was the student speaker when I graduated.
I was the definition of a go-getter.
Lauren: It’s always us! Like I always say, Type A, overachievers! It’s unbelievable to me. It’s always those of us who really give a damn.
Natalie: That is so unfair.
Lauren: It’s so not fair.
Natalie: It’s almost like you guys would take over the world and there’s some force of nature that’s, like, “No, no, no! Let’s keep this top-level group of people back just a little bit, because you’re going to take over!”
Lauren: Well, we’ve already got the odds stacked against us being female, right? So it’s just adding another thing onto the pile, isn’t it? It’s amazing to me that you were able to get through all that. You’re mentioning that you were weaning yourself off the opioids. Is that because you felt that they were actually hindering your functionality?
Jaelin: Yeah, so at that time, I just felt like I couldn’t do everything I wanted to do. I was just so tired all the time. And in classes, I was falling asleep too much. I had already explained to my professors. Thankfully, my university was really great about working with me, with my disabilities and everything, and their EOPS [Student Extended Opportunity Programs & Services] office is great. They’re great about working with disabilities.
Natalie: That’s something that you could point out to anybody that’s listening that doesn’t know that, if you get in the disabilities office at your university … if you miss a test because you just can’t get there, you have a right to take it over, or more. They kept asking her if she needed more time. She didn’t need more time. She needed more days.
Lauren: That’s interesting. Because I’ve talked to a lot of people who’ve been through university with chronic illnesses, and some of them have had no support. But I wonder if it’s also a difference between your going to Cal State, Northridge … if there’s a difference between going to a state university like that, that maybe is more funded by the state government, than a private university. Because a lot of people I’ve spoken to have said they don’t receive support.
Jaelin: You know, what I have found more than anything is, it’s about talking to your professors. I found when I walked up the first day of class and said, “Hey, I just want to let you know I have a disability. I have trigeminal neuralgia. I might end up in the emergency room at some point during this semester. But I just want to let you know, up front, that I’m registered with the disability office. There might be some things I need to work through with you.” And every professor has always been, like, “Okay, great. Thanks for letting me know.” And as soon as I have a problem, I email them, and I’ve rarely had to even involve the disability office. Just because if I let them know up front and email them as soon as there’s a problem, the professors have always been pretty good about working with me.
Lauren: It’s that lesson in self-advocacy, isn’t it?
Natalie: She’s a great communicator. She’ll go in during business hours, whatever she needs to do. She’s been that way her whole life. Thank goodness, she learned how to do that.
Lauren: Well, from you!
Lauren: So at this point, you’re mentioning the TN. Had you been diagnosed with the trigeminal neuralgia at this point?
Jaelin: At this point, I’ve only been diagnosed with CRPS. That’s the only diagnosis I’ve ever been able to get, because out in the Inland Empire … I’m going to be honest … it kind of sucks out there. I’ve been trying to get referrals out into LA as much as possible. Everyone sort of shrugs their shoulders at me. Like, “Wow, I just don’t know what’s wrong with you. Good luck out there, kid!” And I’m like, ‘Okay, I guess I’ll figure it out on my own.’ And so I graduate college, and all that overachieving, doing everything I could, has drained me. I move home and I am so sick. It’s been a little over a year now since I graduated college, and I have just been so sick, so tired, have barely been able to get out of bed most days. I have just been more exhausted than I can put into words. The pain has been so much.
Lauren: We should also put this pain in perspective for our listeners, too. CRPS and trigeminal neuralgia are known to be some of the most painful illnesses known to man.
[CRPS and trigeminal neuralgia are] both nicknamed “the suicide disease”, because 25% of the people who have both of these diseases end up committing suicide. And on the McGill Pain Scale, which is a highly and widely respected pain scale in the medical field, they are both ranked above planned and unplanned childbirth.
Lauren: Unbelievable. Man, so when you do decide to have children, that’ll be no problem! (laughs)
Jaelin: That’s what I’m hoping! At one point in college, I went to the emergency room for facial pain. I needed help and I was also sort of holding my side, and they did an ultrasound and they said, “You have gallstones. Can’t you feel that?” I needed my gallbladder out, and I was, like, “No, I can’t really even feel that. That’s not a concern to me.” I had facial pain. I couldn’t feel gallstones and my gallbladder was about to burst.
Natalie: She had to have her gallbladder out. Me, I called 911, I thought I was dying when I had my gallbladder out. And she’s, like, “Oh, no, I didn’t even feel it.”
Jaelin: So I had surgery and my gallbladder out from the ER, and I didn’t even notice because my facial pain was so bad.
Lauren: I mean, it’s unreal what you have become. You’ve become this Amazonian.
Natalie: That’s a great way to look at it!
And yet there are still some times in my bed, some days, where I’m, like, ‘Am I making this up? Is this in my head? Am I a crazy person?’
Lauren: Is that because people have told you that?
Jaelin: It’s just some days … I don’t know … I just feel like some days …
Natalie: You can’t believe this is your life, maybe?
Jaelin: Yeah, and I’m just feeling like … maybe I am just being lazy, or, I could just get up and live my life, you know? I sit there and I live my life like this. And I just wonder, you know, if this is just something that’s become me. And then some days, I have these horrible pain feelings, or I forget to take my meds one morning, and then two hours into the day I’m hunched over in pain, and I’m, like, ‘Nope! it’s real!’
Lauren: Yeah, well, those reminders are certainly something. But it’s frustrating listening to that. Not even being your mother … I’ve just met you. It’s frustrating for me to hear that, and to think that you would not even believe yourself sometimes. People who have illnesses like this, that you don’t look in the mirror and see it … the position that you have to put yourself in … but you’re sort of put there socially, aren’t you? Because if no one else can see it, they can’t justify it … how can you?
Natalie: We had a really striking experience like this. So many doctors had seen her. And this one doctor said, “I know this special dentist. And he can come see you; he has his own plane.” So we call him … “Oh, yeah, I love to practice flying my plane.” He flies in to where we are …
Lauren: I am already concerned about him having a plane!
Natalie: So he flies in, we go to see him, and he actually looks at me and says, “Mom, you are the problem. She is getting so much attention from you from doing this. This is your problem. And you need to tell her she’s okay. You’re allowing this to happen.” I burst into tears. I went out into the parking lot. She was still in the chair. He followed me out there and still told me that it was my fault. I’m crying and sobbing and falling apart.
Lauren: Also, stay in your lane, man! He’s not a psychologist!!
Natalie: Yeah. This was at the beginning. And I wish that I would have known then what I know now.
Lauren: But if you were in that position again, I don’t think you’d have nearly the same reaction.
Natalie: No, not the bursting into tears anymore. I’m past tears now. I’m at the mad stage. I would be mad.
Lauren: And we kind of get more done when we’re mad, don’t we? If you turn it into something that you’re using positive energy for.
Jaelin: Absolutely. But at the beginning of this year, I was sort of a little mad. I was thinking, it’s been five years since I’ve had a new set of doctors take a look at me, and see what new procedures or new treatments there are. I’m going to do it all over again. So I went to a new neurologist, and he’s taking a look at me typing up some notes and he said, “Okay, so you have trigeminal neuralgia along with the CRPS.” And I’m, like, “I’m sorry??” … leaning forward, stretching out in the air. “Could you say that again??” And he was, like, “Well, you have trigeminal neuralgia, obviously.” And I’m, like, “Obviously?” And he was like, “You’re a pretty textbook case.” And I said, “I’ve never been diagnosed with this.” And so I went home and did some research.
And I am a pretty textbook case of trigeminal neuralgia, yet in almost 10 years, no one had diagnosed me with that.
And so I immediately started doing research on treatments for trigeminal neuralgia, and discovered microvascular decompression surgery, which a lot of people find relief from. And I found out that they do it at UCLA, where I had my second surgery done. So I immediately made an appointment with the neurosurgery department there. I go there with my mom, and we’re really excited about the surgery — and they tell me I’m not a candidate, because I have type two trigeminal neuralgia, not type one.
Lauren: There are two types?
Jaelin: Yes. And I also, once again — a one-in-a-million case — I have trigeminal neuralgia on both sides of my face, and not just one side. And so they told me that I’m not a candidate for this surgery.
Natalie: And we cried! We’d been mad … but we did cry.
Jaelin: We were bawling.
Natalie: Yes, just six months ago we cried again. He felt terrible; he wanted to help.
Jaelin: Yeah, he felt so bad. He said, “I know you wanted this to happen. I’m not completely ruling out surgery, just not this surgery.” And so he referred us to where we went today, the headache clinic.
Lauren: So this has been six months in the making.
Jaelin: Yes, because they were booked so far out.
Natalie: Plus, you have to call and call and call.
Jaelin: It’s so hard. And so he said, “Have them take a look at you. If there’s something they can do for you, great. If there’s nothing else that they can do for you, come back and I will try some riskier neurosurgical options.”
Lauren: So that’s still something potentially in the future?
Jaelin: Yes. And he actually referred us today to another department, as well. And so we’re just getting referred to a bunch of people again.
Lauren: You’re gathering information.
Jaelin: Yeah, we’re gathering more information. And actually, right now I’m also looking into getting someone at the Mayo Clinic to take a look at me, as well.
Natalie: So we will be doctors by the end of the year … so if anyone needs us, just call the Doctor Palmers.
Jaelin: I was in a sorority in college, and everyone referred to me as Dr. Jaelin. Literally, if someone was sick, someone would call me and be, like, “Hey, so this is what’s happening. What should we give her?” And I’d be, like, “A couple of antacids. She’ll be fine.”
Natalie: We’ve had neighbors do that, too. They’d have an earache or whatever, “Okay, what did they give you?” Amoxicillin. “Okay, ask for the Z Pak. You’ll get there faster.”
Jaelin: Her dad, my grandpa, is a doctor.
Lauren: You learned this by osmosis!
So it’s been 10 years. It’s been a long time. And it’s been a lot of different doctors, and it’s been a long journey.
Lauren: And this has also turned into advocacy work for you, too. Have you found a real positive in all of this, in meeting the community?
Jaelin: Yes, so about three or four years ago, I helped plan LA’s inaugural Autoimmune Walk, and over that first year we raised over $80,000 for autoimmune diseases. I spoke at that, and I helped plan it, along with Haley and Barbara Ramm. Haley Ramm is actually on Hulu’s Light as a Feather … check it out … Season Two just came out.
Lauren: That’s actually been on my Watch List. I’ve gotta watch it now!
Jaelin: Yes, it’s great.
Natalie: She’s known them for a while.
Jaelin: And so that’s still going on every year, which is great. And that was something amazing that I was really proud to be a part of. But right now, I am actually the director of advocacy for Fight Like A Warrior, which is an amazing organization, which proves that “sick fights back”. They originally started out with a small program called ‘Cards for Warriors’, where people can request cards for loved ones with chronic illnesses; people with chronic illnesses make cards for people with chronic illnesses.
Jaelin: Yeah. And it’s sort of grown into this big nonprofit that now does a lot of advocacy work for people with chronic illnesses. And I’m really excited, because just about three months ago we started the whole advocacy division that we hope will grow into a bigger advocacy platform that will hopefully grow to be something that’ll help even more people.
Lauren: So you’re also meeting more and more people living with invisible and chronic illness, as well.
Jaelin: Yeah. Actually, the only reason I’m able to contact someone at the Mayo Clinic was because the other day I was on a phone call with other girls with invisible illnesses … when I called the Mayo Clinic, they said they didn’t treat CRPS. And then when I was on this call, the girls were like, “Oh, no, no, they definitely do. I actually saw someone for CRPS. Here’s their number, and here’s the doctor’s name.” And so it’s incredible what this community can do. I am so thankful for this community. The first three years that I had a chronic illness, for some reason, even though I was a teenager, it didn’t dawn on me that there would be community online. So the first three years I was just all alone, thinking I was the only one who dealt with this. I was alone in my room, just trying to figure out how to navigate through this journey.
And once I found the online community, it really changed my life. And to this day, I’m so grateful for online community.
That’s how I met you.
Lauren: Yeah! It’s how I’m meeting so many people who are coming on the show, and I’m just connecting with in general. And it’s amazing how open the community is to meeting new people. No one’s, like, “No, don’t talk to me.” Everyone’s really friendly. We’re all very open to each other. I think that’s really amazing. And the fact that you’re able to then also network with doctors because of it is priceless.
Jaelin: Yeah, absolutely priceless.
Lauren: What about you, Natalie, how do you feel about all this advocacy work that Jaelin is doing?
Natalie: It’s been amazing. I’ve seen her grow from it. As she does her photo shoots, it’s been a lot of fun. She always makes me and her sister … we’re professional photographers by now, along with our “doctoral degree”! It’s fun to see her. Sometimes a photoshoot will wear her out the next day. But at the same time …
I don’t want her to be defined by her illness, either. I don’t want her to fall into the community so deeply that she forgets that she was going to be a lawyer and she’s going to run the world!
That worries me. But I am proud of what she’s doing. I can see how incredibly important it is for people to bind together.
Lauren: And I think there’s definitely inroads there that can be made, particularly with regard to disability rights and the legal space, right?
Natalie: Oh, wow, don’t get started on that!
Lauren: But you’re so deep in that with the community that that’s already a window that you have into the legal profession. And I can see that definitely turning into something more, as well.
Natalie: Right, for a long time she wanted to be a doctor and help other kids like her. And then she got into politics. She said, “What am I doing? That’s my calling.”
Lauren: Absolutely. You’re a communicator, so there you go. It’s really interesting to me, because in this disability community, we struggle with identity a lot. There’s always that … Do I define myself by this disease? Does this disease define me? There are always those give-and-take conversations happening. And also, there are the parts of the community that are very depressed, and not necessarily dealing with what’s handed to them — from an emotional perspective. And then there are the other parts of the community that are getting up and doing something. And it’s about meeting everything in the middle and helping everyone, isn’t it? I think that’s really exciting. So, can you tell us what a typical day looks like for you? Is there a typical day in the life of Jaelin, in terms of how you’re managing your symptoms and taking medications, and all of that kind of thing?
Jaelin: I can tell you what an ideal Jaelin day looks like.
There are definitely days where I am just worn out and I don’t feel good, and all day is just spent in bed. And I’ll be totally honest about that.
But on the days where I’m doing okay, I’ll wake up and the first thing I do is, I’m checking my phone on Instagram because I want to see what everyone is up to. I want to see what’s going on in the community today.
Lauren: So the first thing you do is check in with the community?
Jaelin: Yeah, definitely.
Natalie: And by “first thing”, that’s maybe 11am.
Lauren: Same for me!
Jaelin: Because it’s hard to go to sleep. I’m sure a lot of people will relate to that. It’s hard to go to sleep with a chronic illness.
Natalie: That’s the frustrating thing for me. I’m like, “Can’t you just go to bed earlier so we can get up earlier?” I don’t understand why she can’t just adjust that schedule.
Jaelin: And what I tell her is, “Okay, Mom, if I can only just give you my pain and say, ‘Just go to sleep!’”
Natalie: I would gladly take the pain.
Jaelin: Yes, she would gladly take the pain. But I just explain to her … if you just had all this pain, and then I’d tell you to just go to sleep …
Lauren: It’s not that simple.
Jaelin: Yeah, it just doesn’t work that way.
Lauren: And how many medications do you then take to make all of these things happen, without screwing your body up?
Natalie: I’m, like, “Can’t you just have a glass of wine? You’ll be fine!” (laughs)
Lauren: If only wine could cure everything! (laughs)
Jaelin: (laughs) That is my Mom’s cure for everything!
Lauren: It’s often mine as well! (laughs)
Jaelin: But yeah, so I’m checking in, and then eating breakfast. And then I’m on my computer; I’m checking in with Fight Like A Warrior, seeing what emails are up to today. Like today, we have a story takeover, so I’m checking in to see if anyone needs anything from me — any last-minute graphics, checking in with team members. I have five team members, so there’s often a lot of coordinating to do there. And then a lot of times what I’ll end up doing is getting dressed for, like my Mom said, little photo shoots for Instagram. I’ll often get my Mom or my sister to go somewhere around the neighborhood, or in my backyard, to take a little photo shoot. And then get that all set up and scheduled for whatever day that is.
Lauren: So it’s really about engaging with the community even more, and creating content for other people in the disability community.
Jaelin: Yeah, definitely.
Natalie: All within 100 square feet, though. That’s the thing; it’s not a big life, it’s all in a small area. Because that’s all she’s up to.
Jaelin: Yeah, definitely very true.
Lauren: There’s a limitation there, but you’re engaging beyond that physical, geographical limitation with the wider world.
Jaelin: Isn’t that great?
Natalie: That’s the great world we live in.
Jaelin: And I created a thing called Master List. It’s a “to-do” list, but separated by categories. And so I’ll create those at the start of the week or at the start of the day. I try to check off as many things in the sections as I can in a day. And then usually by like 6, 7, 8 … whenever it is that I’m done … I’m just, like, “I’m done.” And then my sister and I usually will pass out and watch RuPaul’s Drag Race on my bed.
Lauren: (laughs) That’s not a bad way to end the day!
Natalie: Now that The Bachelorette’s over.
Lauren: Can we talk about that??
Jaelin: That was a surprise ending!
Lauren: That was a surprise ending, let me say! Now what about balancing the demands of work and life? Is this work that you’re able to make a living doing?
Lauren: So this is volunteer work?
Jaelin: Yes. Fight Like a Warrior is all volunteer work. I’ve honestly been trying to monetize my Instagram. That’s something I’ve been working very hard at.
Natalie: Tell them your name.
Jaelin: Oh, yeah … @JaelinPalmer.
Lauren: Oh, my goodness!
Jaelin: Yes, my Mom loves to plug that.
Natalie: And the movie Yours, Mine & Ours, starring Dennis Quaid, is on Netflix. She is the girl bully in that movie.
Lauren: You were a girl bully?!
Jaelin: I’m always the bully!!
Natalie: If you’re over 5’ 8”, bam … you’re the bully.
Lauren: And yet … the sweetest girl!
Jaelin: Yeah, it’s a height thing. And yeah, I’ve been applying for part-time jobs as much as I can — remote work or in person. After I graduated college, I went to DC to work. What I would love to do here is work in a regional office for a Congressperson.
But the reality of it is, I can’t work in an office for eight hours a day. I can’t realistically expect myself to get up and work all those hours and not need a rest. And that’s something that’s been very hard to deal with. That’s something that’s been very hard for my family to deal with. Because I have no money.
Lauren: And you’ve got rising health costs, as well.
Jaelin: Yeah. I have no money coming into my bank account.
Lauren: Send her some money, guys!
Jaelin: (laughs) It’s something that I’m trying to figure out, and it’s difficult. It’s incredibly difficult, because being a young person and being sick, and not being able to just go get a job anywhere … I tried to at the beginning of this year; I was a host at a restaurant, because I thought … a host, right? Not that difficult. You’re just seating people.
Lauren: It’s shorter hours sometimes, yeah.
Jaelin: It ended up being so labor-intensive, that I was literally just shaking at the end of shifts. And they were, like, “We need you to clean better and work harder.” And I was telling them, “I cannot work any harder than I am.” And every second I wasn’t there, I was asleep … actually asleep. So I was either asleep or there. I couldn’t do anything else in my life because it was so hard.
Lauren: And that’s the difficulty, isn’t it, as well. A lot of bodies, not just some — but like, a huge part of our population that’s disabled, is not designed to work within the rubric of general employment — these 9-5 kind of jobs, jobs where you’re on your feet a lot, jobs where you don’t have access to the comforts that you need to manage your pain and fatigue and things like that. So it’s really interesting how many employers could make those kinds of accommodations — if they really thought about it.
Natalie: Well, something so simple as, anyone that works with the public is not allowed to carry around a water bottle. So she didn’t have water. Here she is sweating twice as much as the regular worker, and her medication makes her thirsty — and they would not let her have water available. You have to have a drink on your breaks.
Lauren: Wow, that’s really bad.
Jaelin: Yeah. It was apparently a health violation or whatever that I couldn’t have a water bottle on the side or anything. But I mean, I was just dying.
Lauren: I’ve never heard of that.
Jaelin: And my other problem is, even at a desk… I have to lie down at some point during the day.
Lauren: But not all the way, just reclining!
Natalie: (laughs) I would always say, when I had the surgery when I was 16, I’m like The Elephant Man — because I remember that The Elephant Man couldn’t lay all the way down. That movie had come out in the ‘80s, and my face was all swollen, and I couldn’t lay down. And I was like, “I’m The Elephant Man!!”
Lauren: That’s so funny you bring that up, because I was talking to someone only yesterday about The Elephant Man. “I’m not an animal. I’m a human being!” So, this is also, I think, one of the things that we are addressing here — the fact that health advocacy and disability advocacy needs to be paid, right? So many of us who work in the advocacy space don’t necessarily get paid. And I know it’s hard, because we work for foundations where they’re putting all the money into research and different causes and events and stuff — to help create more awareness. But it’s really interesting that a lot of advocates work on a volunteer basis, and perhaps within just the health advocacy space, there needs to be a change, too?
Jaelin: Yeah, it’s so tough because when you work for them, you know how much the money is needed to do other things. But at the same time, you know how much the employees need the money. Then at the same time, you know if it’s paid, you know how few employees will be paid — and then how hard those few jobs would be to get. And I don’t know … it’s all just so difficult. Everything is.
And getting disability from the government is so difficult. We tried that; we went through the very difficult process to do that. I got denied.
Natalie: And so now we’re at: do we pay a lawyer and go through it again? She wants to work; she also doesn’t want to be on disability. But yet she has no money. Yeah, it’s a difficult decision.
Lauren: How important do you think it is that we keep talking about chronic illness and invisible illness in particular?
Jaelin: I think invisible illness, in particular, is incredibly important. Just because I feel like in these spaces, it becomes so normalized that we think, like, ‘Oh, yes, it’s a thing.’ Everybody remembers it and knows it. But then if you go out into the world, you forget that, in general, it’s not known — and people forget about it so easily. In college and in my sorority and just on campus, it’s incredible how many people just don’t realize it … how difficult something can be, even when you’re just setting up an event … you know, things like, “Hey, we should have an accommodation for that.” People forget about that. Or just assuming something when they see something — like, “Can you believe they did that?” Well, like, “Hey, you don’t know what they’re going through.”
Natalie: Her roommate said to her, “You’re so lucky you have a handicap placard.” And I remember she called me, crying … “How lucky I am?! You’re lucky you can walk from your parking spot all the way; you’re lucky you can go out and party; you’re lucky you can go on dates.” Just little comments that people don’t think anything of.
Lauren: I’m sure she didn’t mean to hurt you, either. But it’s those off-handed comments that can be the most painful — that come without thought.
Jaelin: Yeah, it’s just little things that build up into big things. My roommates lived with me and knew how hard everything was for me, and still sometimes would question why I would be laying in bed all day or would make fun of me for waking up so late — or things like that. And, you know, it’s like, “You know how hard it is for me.” It’s just so difficult. What I’ve learned from having my chronic illness, more than anything … there are two main things: number one …
I truly have learned to appreciate that you never know what someone else is dealing with. Everyone is fighting a battle that you know nothing about. I have learned to appreciate that for every single person.
No matter what anyone says about someone, I think in the back of my mind … I have no idea what is going on in their life, and so I cannot judge them based off of that. And number two is, that …
I can handle anything life throws at me because I have been in the very lows of lows. And I have gotten through it. I just know that.
And that’s something empowering to know, too — to be able to know that no matter what I go through in life, I will be able to break through it. And it’s something that has gotten me through a lot, and it’s something that makes me not have fear for the future.
Lauren: Yeah, it’s really interesting because I always wonder … what was your goal, Natalie, raising children? Was it, like, I’m gonna raise empowered, strong, but vulnerable human beings? It’s because of her illness that this has happened.
Natalie: Absolutely. I was raised in a very strict religious environment. And I felt like that was so oppressive. And I sought out to just do the opposite. You’re a girl, you can do whatever you want; you need to get a degree, you’re your own person. Where, I was just expected to get married and have kids. Which I did at a very young age. Moved to California, and was, like, “Wow, there’s a whole world here!” And I love it here.
Lauren: So it’s come good in a way — I mean, not fully, because obviously, you’re still dealing with symptoms. But in an emotional sense, it sounds like everyone’s come good. So that’s really important, isn’t it? And that’s also something to be thankful for, too, isn’t it? Because it’s like those times when you couldn’t take your antidepressants and were seeking mental health support as well, to deal with these physical illnesses. That can be really challenging, too. So, I wrap up my interviews with some Top Three Lists. And I’ll ask you both, actually … you can each give me your Top Three … what your Top Three Tips for someone who suspects they might be entering this invisible chronic illness world — whether it’s tips for family and loved ones, or tips for patients.
Never stop seeking answers, number one. And number two, always push for more information.
The doctors are done. They’re on a schedule. But you want to say: “What happens now? What do you think I should do next?” My third one would be: Take it seriously, I guess. Take your child seriously, and don’t make them feel like there’s anything wrong with them.
Jaelin: I think for the person actually going through it, I would say … number one …
Believe in yourself and know that you can get through it. I think having belief in yourself, and knowing that you have the power to navigate this, and you have the power to advocate for yourself, is more important than anything else.
I was lucky as a child; when I didn’t know that, I had my mom to do that for me. And then she taught me how to do that for myself. And that has made all the difference in my life. Number two would be, I think, to know your limits. And know when it’s time to stop, and be able to tell other people … always have someone there you can tell, “Hey, this is my time to stop.” Because when we’re out, sometimes there are times where I’m just, like, “This is enough.” Or even this weekend, we were thinking about going on a lake trip, and I know I’m not going to go unless my sister’s there. Because then if everyone’s out, my sister and I can say, “Oh, we’re going to go back to the house.” And we can drive her car, and I can go back and rest.
Lauren: She then becomes your advocate within the family.
Natalie: Yeah. We literally went to the emergency room on our way to Cabo before we got on an airplane, because she was in so much pain. It inconvenienced the rest of the group, of course … they’re in vacation mode, they want to have fun. But we’re in an Uber on the way to the emergency room. You’ve got to be there.
Lauren: And it sounds like your family really does show up. It’s not just your mom, it’s your siblings. Everyone shows up.
Jaelin: Yeah. I mean, my family’s amazing.
Lauren: You’re very lucky.
Jaelin: Yeah. And I think number three is: self-care. I know people say that a lot …
Lauren: It’s a buzzword!
Jaelin: Yeah, it’s a buzzword, that people say self-care. But I think that means a lot more than … oh, journaling and bubble baths! I journal, I do. But for me, it’s a way to right things. It’s almost like a therapist. You write things and you work things through and you cry and everything. But for me, that means when I’m in a lot of pain that day, I have to tell people, “No, you know what? I can’t hang out” … no matter how embarrassing it is, or whatever. And I just lay in my bed in a ball with a heated blanket and I watch Netflix all day.
Lauren: Sometimes self-care looks like boundaries. Knowing your limitations, and then knowing how best to take care of yourself.
Jaelin: Yeah …
Self-care is doing what’s best for you, no matter what.
Lauren: That’s really great. Now, obviously, you’ve had to change the way you live your life. Maybe this is just the way you live your life, because you got stuck with this so young. You fell into it. Are there lifestyle changes that you’ve had to make that you ever cheat on? Or, comfort activities — like you say when you get into bed with your heating pad? Or, guilty pleasures or secret indulgences — a Top Three that you could give us?
Jaelin: I was thinking about this one … I think there are certain ways that I think my mom would like me to live, that I don’t do! Like, my Mom would love me to exercise and eat a certain way.
Natalie: I do indulge her Pirate’s Booty obsession.
Lauren: Pirate’s Booty is fantastic!
Jaelin: Yeah! Pirate’s Booty actually, legit, helps my digestive system.
Lauren: Your mom’s laughing!
Natalie: And what does Nutella do?
Jaelin: Nutella doesn’t help anything, but I love it!
Lauren: Nutella produces joy! (laughs)
Jaelin: Yeah, yeah! (laughs) Okay, so obviously Nutella and Pirate’s Booty are my snack things that I love, that I’m just obsessed with. I dip green apples in Nutella. Apples really do help … I know it’s hard to say, but constipation comes from opioids … we’ve all just got to be honest about it. Apples actually do help with that.
Lauren: Good to know.
Jaelin: And Nutella just makes it more tolerable, is all I’m sayin’. Sometimes, you know, if you can’t down any more stool softener or laxatives or whatever, sometimes I’ll eat three apples in a day. It’s a natural fiber.
Lauren: And it naturally cleans your teeth. So there’s a double benefit!
Jaelin: Yeah, so you do what you can. And then, I love heated blankets because — unlike heating pads — they’re long, and you can wrap them around areas. So for me, for my face, I can wrap it around my face in certain areas, and you can wrap it around your stomach. Heated blankets are the bomb. My mom loves them, and our dogs love them, too.
Lauren: Of course they do!
Jaelin: That’s the other thing … if you have them wrapped around yourself, your dog will want to cuddle with you.
Lauren: Cuddles! Can’t deny the joy of the cuddle.
Jaelin: Who doesn’t love an animal snuggling with you? And I think any TV show that you want to watch … my sister and I watch the dumbest TV shows together. Some people might think they’re ridiculous, but RuPaul’s Drag Race …
Lauren: That’s a groundbreaking show! And it’s fantastic.
Jaelin: Actually, okay … I will say, I watch dumb shows on my own. But my sister and I watch pretty classic TV shows. We watch Will & Grace. We watch RuPaul’s Drag Race. We watch Love Island. My sister is a proud gay woman who is a huge advocate in that community. So we watch a lot of gay shows.
Lauren: So that’s two advocates in the family.
Natalie: Oh, yeah It gets better.
Jaelin: My sister has worked with It Gets Better Project for a long time. And on my own, I watch the dumbest TV shows!
Lauren: So you just like to indulge, and you give yourself permission.
Jaelin: Yeah. No, I mean, I think I’m one of those people who have watched too much of Netflix and Hulu’s programs — just because I spend so much time in bed. Sometimes I’m just watching it because I need something to watch while I’m sitting there.
Lauren: Absolutely. And Natalie, do you have any Top Three self-care or comfort activity tips for caregivers?
Natalie: I think that sometimes I have to remind myself that she’s not me, that I’m a separate person.
Because your kids feel like a part of you. And when she’s suffering, I’m suffering.
And then I have to think to myself, I still have to spend time with my boyfriend … significant other … I was trying to think of a better word than ‘boyfriend’, which sounds silly when you’re 50 years old.
Lauren: No, you’re not!
Natalie: I just turned 50.
Lauren: You look fantastic!
Natalie: Well, thank you. It’s all the sun and wrinkles over the years!
Lauren: Not at all. I would not have guessed that you were in The 5-0s.
Natalie: Thanks! So yeah, disconnecting yourself from it emotionally. There are days when she’s in her room and I think I should just go spend some time there. But then I think, I should take a breath and live my life. Always keep going. Ask doctors lots of questions. Always keep thinking that there is help around the corner.
Jaelin: That’s self-care for you.
Lauren: Self-care is not just for patients. It’s also for caregivers.
Natalie: Just taking time for myself. I try to exercise, I try to stay on top of my looks. I think it’s important that when you go into the doctor’s, also, your kid might be looking like something the cat dragged in, but you don’t want to look like that, too.
I think that, right or not, the world perceives you by how you look. And at least as a parent, you want to be presentable … “Hey, look, you know, we’re a family that’s taking care of business here, and my child deserves this respect.”
Jaelin: That’s actually very true, however weird or wrong that may seem. A lot of times, the person who is in pain looks like a strung-out druggie because you haven’t showered, you’re sweating, you’re shaking from pain. I think the parent or the person who’s with them needs to look put-together.
Lauren: Doin’ business.
Jaelin: Yeah, nice and put-together. My mom always has makeup on, her hair’s done, she’s in nice clothes. Because then it shows … she’s sick and someone’s there taking care of her.
Lauren: And it shows the stark contrast.
Natalie: I would say overall, doctors believe her. We have never had a doctor say, “You’re a pain seeker.” They will give her that extra shot of fentanyl or whatever if I insist.
Jaelin: Only once in my life, at an ER, have I been marked as a drug-seeker.
Lauren: That’s actually pretty good odds, given the opioid crisis.
Jaelin: Most of that is due to my mom, and then the other half, I will say, it’s because I’m a young white girl — I’m very lucky.
Lauren: You recognize your privilege.
Jaelin: I’m very, very lucky to look how I look when I go in there … and speak how I speak. Because I know when I go up in there and with the education I have and how I look, that doctors believe me. And the other thing I’m looking for is …
Get everything documented early.
Because my mom has taken me in every single time, has gotten everything documented, has gone to every doctor … that when they pull up my history, it doesn’t just say ‘Oh, she’s been in for pain meds.’ They see a history of, ‘Oh my gosh, she’s seen every neurologist; that goes back years and years and years.’ They’re, like, “Okay, we believe you. Here, let me do it.”
Lauren: That’s wonderful. Well, what a wonderful team. I can’t thank you both enough for coming on the show today. Is there anything else you want to share with our guests before we get to lunch?
Jaelin: I would just say …
If you have a caregiver, always appreciate them. Always remember to say ‘thank you’ to them.
I probably don’t say it enough. But I try to remember to thank my Mom for everything she’s done for me because I appreciate it so much. I could not have gone through my life without her. I probably wouldn’t be alive without her. And so, just thank you so much, Mom, for everything you’ve done for me, and I love you so, so much.
Natalie: You’re welcome. And you are great at expressing that, you are.
Lauren: And we’ve got it now on audio to prove it! Tell us again where they can find you, Jaelin.
Jaelin: Yes. So you can find me on Instagram @JaelinPalmer and all my other links are through there.
Lauren: Well, Jaelin, Natalie, it’s been an absolute pleasure. And I look forward to hearing more about how your journey continues, and hopefully you find some more solutions.
Natalie: Yes. Keep ‘em coming.
Lauren: Thank you so much.
Jaelin and Natalie: Thank you.