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My body literally feels like it's on fire
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My rare conditions cause me to have debilitating pain. It feels like there's fire ants crawling up my legs, biting me
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You were having these crazy pain flare-ups. That was really scary to not know what I could do to help you
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I'm always on high alert. I'm a little worried you might need to call Julie today
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If it starts to roll, it gets bad fast. And when it does, I call my nurse immediately
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The doctor cleared you today for our big bed of fluids. So I start my morning on this PEMF mat every day
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It is a pulse electromagnetic frequency mat. And basically what that does is like penetrates your body with infrared heat
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helps decrease inflammation that will help anybody with like an autoimmune disease
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or a chronic illness, chronic pain, and have a little bit of relief. I have six chronic illnesses
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For all of my conditions, there's no cure. The rarest one that I have, though, is PAN
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That one's been difficult to deal with. PAN is the acronym for polyarteritis nodosa
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It is a degenerative form of vasculitis that impacts your small and medium-sized blood vessels
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causes your organ systems to slowly fail because your veins get so swollen
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I was super lucky, and I got diagnosed early in my whole journey with PAN
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The PAN had impacted my nerves, and that injury caused me to develop CRPS
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or Complex Regional Pain Syndrome. CRPS is a serious pain condition. I'd say my pain's at like a five and a half right now
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Thank you so much. I wake up some days and my pain is a 10
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and usually that's a let's call my doctors and see if I need to go to the hospital
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But if I can get through it at home, that's ideal. It's no fun going to the hospital
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On really bad weeks, I'm crying when I wake up. Our body literally feels like it's on fire
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It's hard to treat, it's hard to control, and when it is active, it's unbearable
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How are you doing? How are you feeling this morning? It was like a five when I woke up, but I feel like it's like a six right now
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Need to get something in my stomach so I can have meds. My husband and I met when we were 19
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I know that I able to live a normal life because of Cooper Every morning when I wake up he out in the kitchen making me my smoothie organizing my pills and just making sure that he is enabling me to have a good start to my day
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He wants me to conserve my spoons and energy so that we can use those for something fun together
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He unlocks life for me. This will be the only thing that we really have until lunch
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just because she usually doesn't feel good, she doesn't like to eat, and the meds kind of upset her stomach, so this is just the base layer
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breakfast of champions and I think that's it for this morning but we have a lot more to get through
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on this day it was January of my junior year that my health took a nosedive Cooper and I were
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going out to dinner or something and I remember looking at him as we were getting ready and I
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just said I am in so much pain right now like I can't go out to dinner and instead we went to the
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emergency room and then I got sicker by 2018 2019 I was really really sick couldn't get out
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out of bed, ended up quitting my job. You were having these crazy pain flare-ups where you were
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just like passing out, having seizures. Yeah, you were so dramatic and that was really scary
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to not know what I could do to help you. When I got that call that I was having PAN, it was a
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hey, you have a disease, there's no cure for it, it only gets worse from here. And it felt like my
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heart fell out of my body. The first rheumatologist I saw about it, they told me I had four months to
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live. So that then scared the out of me. Is this going to ruin my life? Am I going to die? Am I
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going to have to change everything about myself and how I live? On the really bad pain days
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it is life stopping. That's when my body's on fire. It feels like there's fire ants crawling
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up my legs, biting me, that I have my hand over a hot flame or touching a cast iron that's on
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It's debilitating. Cooper takes on way more tasks. If I switch into a bad day or if I start with a bad day
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he goes into full caregiver mode. I think the hardest part of living with chronic pain
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is that sometimes you just don't feel safe in your own body
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And that's a very weird sensation to experience. Doesn matter how many different things you do you not in the driver seat I am still not feeling good I a little worried we might need to call Julie today All right let do it
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No matter how sick I am right now, it could always get worse, and that scares the shit out of me
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I'm always on high alert. If it starts to roll, it gets bad fast. And when it does, I call my nurse
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She's on speed dial. She just drops what she's doing, and she comes here. Hi, Julie
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Hi, Alex. Ooh, your blood pressure's good today. Honestly surprised. I thought it would be not good
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When I get IV hydration infusions, it's usually when I'm having really high symptoms
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I'm calling her saying, hey, I just talked to my doctors and they want me to go to the ER
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but I really don't want to. Can we try to do an IV hydration at home
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And if that works, then I can avoid the ER and everyone's happier. Sometimes it kicks in in a couple of hours, but a lot of times my patients feel it right away
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It keeps me out of the ER. It keeps her out of the emergency room. First, I was just a content creator, and then I started dabbling in the influencer scene a little bit
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Save your spoons and pace yourself kind of thing. I think it's really important to document my condition when I'm not feeling well and when I'm feeling well
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because I really want people to see, like, what a life with chronic illness looks like in its entirety
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When I looked around online, it was a lot of educational content creators. What I didn't see was somebody sharing their full life
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The good days, too, but also, like, how bad the bad days were
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and to show how wide of a life we live having chronic illnesses
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I think when a condition isn't visible, it's so easy to jump to conclusions that somebody is faking it, that they're exaggerating
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that their flare-ups are for attention. Every now and then, I get the occasional keyboard meanie
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The big ones that percolate to the top are like, you can't be in that much pain, you look normal
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or you look happy, or you look pretty, or whatever. and the fact is like pain doesn't look a certain way
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I'll be honest, like some days are really hard to find positivity
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I find that when I'm having low moments, I lean on Cooper a lot, I lean on my family a lot
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Will you get my computer? I want to FaceTime my dad. This is the perk of having a dad as a doctor
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Hi dad. Hey how are you guys Coop Alex Feeling a little bit run down because of this IBIG stuff but it okay It happens My dad is the surgeon in chief at IUPUI
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Having a parent that is in the medicine field when you have such complex, rare diseases is so comforting and honestly one of the best blessings
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You're unique, as you know, right? You've got a bunch of different things going on, so it's not simple
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I remember crying at a coffee shop with my dad saying, I don't think I'm going to get better. I'm only going to get worse from here. Why should I even keep trying
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My dad just looked at me and said, medicine keeps evolving, honey. Like, you got to hold hope. Sit with it. Be with your family. We're going to get you through this
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And honestly, that was the words I needed to hear at that time
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You just kind of keep checking off until you get to the exact right place and then just stick with it
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I mean, just listen to you over the last 30 some years as you've kind of battled through all this stuff
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Thanks, dad. Good mama squeeze for us. Yeah, I love you, DC
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Thanks. Get some rest, recovery, okay? Sounds good. I think I want people to walk away after hearing my story and know that hope can exist in any situation
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I feel very hopeful. And I think that has to do with the fact that I have accepted that I have a chronic illness
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that my life does look different than other people, that I am worthy of getting care and
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feeling okay and good by whatever means that takes, and that if I have an unconventional body
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I can and get to live an unconventional life. I truly think that every experience that
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we have in life is for a reason. When I look back at being born sick and getting sicker as an adult
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it's led me to here. I don't think I would change it. Having a chronic illness doesn't mean your
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life is over. I think it's like being grateful, choosing to look at the good side of things or
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like still finding the good out of things and being unapologetically yourself as you deal with it all
