00:00My body literally feels like it's on fire.
00:03My rare conditions cause me to have debilitating pain.
00:06You were having these crazy pain flare-ups.
00:09That was really scary to not know what I could do to help you.
00:13Cooper takes on way more tasks.
00:15If I switch into a bad day or if I start with a bad day,
00:18he goes into full caregiver mode.
00:20Every now and then I get the occasional keyboard meanie.
00:23The big ones that percolate to the top are like,
00:26you can't be in that much pain.
00:28You look normal.
00:33How are you doing? How are you feeling this morning?
00:35It's like a five when I woke up,
00:37but I feel like it's like a six right now.
00:39Need to get something in my stomach so I can have meds.
00:42My husband and I met when we were 19.
00:44I know that I'm able to live a normal-er life
00:47because of Cooper.
00:48Every morning when I wake up, he's out in the kitchen,
00:51making me my smoothie, organizing my pills,
00:53and just making sure that he is enabling me
00:56to have a good start to my day.
00:57He wants me to conserve my spoons and energy
01:00so that we can use those for something fun together.
01:02He unlocks life for me.
01:04This will be the only thing that we really have until lunch.
01:08Just because she usually doesn't feel good,
01:10she doesn't like to eat, and the meds kind of upset her stomach,
01:13so this is just the base layer.
01:15Breakfast of champions, and I think that's it for this morning.
01:19But we have a lot more to get through on this day.
01:22It was January of my junior year that my health took a nosedive.
01:27Cooper and I were going out to dinner or something,
01:30and I remember looking at him as we were getting ready,
01:33and I just said, I am in so much pain right now.
01:35Like, I can't go out to dinner.
01:36And instead, we went to the emergency room.
01:38And then I got sicker.
01:39By 2018, 2019, I was really, really sick.
01:45Couldn't get out of bed.
01:46Ended up quitting my job.
01:47You were having these crazy pain flare-ups where you were just like...
01:52Passing out, having seizures.
01:54Yeah, you were so dramatic.
01:56And that was really scary to not know what I could do to help you.
02:01When I got that call that I was having PAN,
02:05it was a, hey, you have a disease.
02:07There's no cure for it.
02:08It only gets worse from here.
02:10And it felt like my heart fell out of my body.
02:13The first rheumatologist I saw about it,
02:14they told me I had four months to live.
02:16So that then scared the out of me.
02:18Is this going to ruin my life?
02:20Am I going to die?
02:21Am I going to have to change everything about myself and how I live?
02:25On the really bad pain days, it is life-stopping.
02:28That's when my body's on fire.
02:30It feels like there's fire ants crawling up my legs, biting me,
02:35that I have my hand over a hot flame
02:38or touching a cast iron that's on.
02:41It's debilitating.
02:43So I start my morning on this PEMF mat every day.
02:46It is a pulse electromagnetic frequency mat.
02:49And basically what that does is, like,
02:52penetrates your body with infrared heat,
02:55helps decrease inflammation.
02:57That will help anybody with, like, an autoimmune disease
02:59or chronic illness, chronic pain.
03:01And I have a little bit of relief.
03:02I have six chronic illnesses.
03:04For all of my conditions, there's no cure.
03:06The rarest one that I have, though, is PAN.
03:08That one's been difficult to deal with.
03:10PAN is the acronym for polyarteritis nodosa.
03:14It is a degenerative form of vasculitis that impacts your small
03:17and medium-sized blood vessels, causes your organ systems to slowly fail
03:23because your veins get so swollen.
03:24I was super lucky, and I got diagnosed early in my whole journey with PAN.
03:29The PAN had impacted my nerves, and that injury caused me to develop CRPS,
03:34or complex regional pain syndrome.
03:36CRPS is a serious pain condition.
03:38I'd say my pain's at, like, a five and a half right now.
03:41Thank you so much.
03:43I wake up some days and my pain is a 10, and usually that's a let's call my doctors
03:48and see if I need to go to the hospital.
03:51But if I can get through it at home, that's ideal.
03:53It's no fun going to the hospital.
03:55On really bad weeks, I'm crying when I wake up.
03:58My body literally feels like it's on fire.
04:00It's hard to treat.
04:01It's hard to control.
04:02And when it is active, it's unbearable.
04:05Cooper takes on way more tasks if I switch into a bad day or if I start with a bad day.
04:11He goes into full caregiver mode.
04:12I think the hardest part of living with chronic pain is that sometimes you just don't feel
04:17safe in your own body, and that's a very weird sensation to experience.
04:21It doesn't matter how many different things you do, you're not in the driver's seat.
04:25I am still not feeling good.
04:27I'm a little worried we might need to call Julie today.
04:30All right, let's do it.
04:32No matter how sick I am right now, it could always get worse, and that scares the shit
04:36out of me.
04:37I'm always on high alert.
04:38If it starts to roll, it gets bad fast, and when it does, I call my nurse.
04:42She's on speed dial.
04:43She just drops what she's doing, and she comes here.
04:45Hi, Julie.
04:46Hi, Alex.
04:47Oh, your blood pressure's good today.
04:50Honestly surprised.
04:52I thought it would be not good.
04:54When I get IV hydration infusions, it's usually when I'm having really high symptoms.
04:59I'm calling her saying, hey, I just talked to my doctors, and they want me to go to the
05:03ER, but I really don't want to.
05:05Can we try to do an IV hydration at home?
05:08And if that works, then I can avoid the ER and everyone's happier.
05:11Sometimes it kicks in in a couple of hours, but a lot of times my patients feel it right
05:16away.
05:17Keeps me out of the ER.
05:18Keeps me out of the emergency room.
05:19First, I was just a content creator, and then I started dabbling in the influencer scene
05:23a little bit.
05:24Save your spoons and pace yourself kind of thing.
05:27I think it's really important to document my condition when I'm not feeling well and when
05:32I'm feeling well, because I really want people to see what a life with chronic illness looks
05:37like in its entirety.
05:38When I looked around online, it was a lot of educational content creators.
05:42What I didn't see was somebody sharing their full life, the good days, too, but also how
05:47bad the bad days were and to show how wide of a life we live having chronic illnesses.
05:52I think when a condition isn't visible, it's so easy to jump to conclusions that somebody
05:57is faking it, that they're exaggerating, that their flare-ups are for attention.
06:03Every now and then, I get the occasional keyboard meanie.
06:06Big ones that percolate to the top are like, you can't be in that much pain.
06:12You look normal or like, you look happy or you look pretty or whatever.
06:16And the fact is like, pain doesn't look a certain way.
06:18I'll be honest, like some days are really hard to find positivity.
06:22I find that when I'm having low moments, I lean on Cooper a lot.
06:27I lean on my family a lot.
06:28Will you get my computer?
06:29I want to FaceTime my dad.
06:30This is the perk of having a dad as a doctor.
06:32Hi, dad.
06:33Hey, how are you guys?
06:36Coop, Alex?
06:37Feeling a little bit run down because of this IBIG stuff, but it's okay.
06:42Happens.
06:43My dad is the surgeon in chief at IUPUI.
06:47Having a parent that is in the medicine field when you have such complex rare diseases is
06:54so comforting and like, honestly, one of the best blessings.
06:57You're unique as you know, right?
06:59You've got a bunch of different things going on.
07:01So it's not simple.
07:02I remember crying at a coffee shop with my dad saying, I don't think I'm going to get
07:06better.
07:06I'm only going to get worse from here.
07:08Why should I even keep trying?
07:09My dad just looked at me and said, medicine keeps evolving, honey.
07:12Like you got to hold hope, sit with it, be with your family.
07:16We're going to get you through this.
07:17And honestly, that was the words I needed to hear at that time.
07:21You just kind of keep checking off until you get to the exact right place and then just
07:26stick with it.
07:27I mean, just listen to you over the last 30 some years as you've kind of battled through
07:31all this stuff.
07:32Thanks, dad.
07:33Give mama squeeze for us.
07:34Yeah.
07:35I love you, DC.
07:36Thanks.
07:37Get some rest, recovery.
07:38Okay.
07:39Sounds good.
07:40I think I want people to walk away after hearing my story and know that hope can exist in any
07:46situation.
07:47I feel very hopeful.
07:48And I think that has to do with the fact that I have accepted that I have a chronic
07:53illness, that my life does look different than other people, that I am worthy of getting
07:59care and feeling okay and good by whatever means that takes.
08:03And that if I have an unconventional body, I can and get to live an unconventional life.
08:09I truly think that every experience that we have in life is for a reason.
08:16When I look back at being born sick and getting sicker as an adult.
08:20If it's led me to here, I don't think I would change it.
08:23Having a chronic illness doesn't mean your life is over.
08:25I think it's like being grateful, choosing to look at the good side of things or like
08:31still finding the good out of things and just being unapologetically yourself as you
08:36deal with it all.
08:46I think that's a good thing.
08:47I think that's a good thing.
08:47I think that's a good thing.
08:48I think that's a good thing.
08:49I think that's a good thing.
08:50I think that's a good thing.
08:51I think that's a good thing.
08:52I think that's a good thing.
08:53I think that's a good thing.
08:54I think that's a good thing.
08:55I think that's a good thing.
08:56I think that's a good thing.
08:57I think that's a good thing.
08:58I think that's a good thing.
08:59I think that's a good thing.
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