00:00My body literally feels like it's on fire.
00:03My rare conditions cause me to have debilitating pain.
00:06It feels like there's fire ants crawling up my legs, biting me.
00:11You were having these crazy pain flare-ups.
00:14That was really scary to not know what I could do to help you.
00:17I'm always on high alert.
00:19I'm a little alert.
00:20You might need to call Julie today.
00:21If it starts to roll, it gets bad fast.
00:24And when it does, I call my nurse immediately.
00:26The doctor cleared you today for our big bed of fluids.
00:32So I start my morning on this PEMF mat every day.
00:35It is a pulse electromagnetic frequency mat.
00:38And basically what that does is, like, penetrates your body with infrared heat.
00:43Helps decrease inflammation.
00:45That will help anybody with like an autoimmune disease or a chronic illness, chronic pain.
00:50Kind of have a little bit of relief.
00:52I have six chronic illnesses.
00:54For all of my conditions, there's no cure.
00:56The rarest one that I have, though, is PAN.
00:58That one's been difficult to deal with.
01:00PAN is the acronym for polyarteritis nodosa.
01:03It is a degenerative form of vasculitis that impacts your small and medium-sized blood vessels.
01:08Causes your organ systems to slowly fail because your veins get so swollen.
01:13I was super lucky and I got diagnosed early in my whole journey with PAN.
01:18The PAN had impacted my nerves.
01:20And that injury caused me to develop CRPS or complex regional pain syndrome.
01:25CRPS is a serious pain condition.
01:27I'd say my pain's at like a five and a half right now.
01:30Thank you so much.
01:32I wake up some days and my pain is a 10 and usually that's a let's call my doctors and see if I need to go to the hospital.
01:39But if I can get through it at home, that's ideal.
01:42It's no fun going to the hospital.
01:44On really bad weeks, I'm crying when I wake up.
01:47My body literally feels like it's on fire.
01:49It's hard to treat.
01:50It's hard to control.
01:51And when it is active, it's unbearable.
01:54How are you doing?
01:55How are you feeling this morning?
01:56It's like a five when I woke up, but I feel like it's like a six right now.
01:59Need to get something in my stomach so I can have meds.
02:02My husband and I met when we were 19.
02:05I know that I'm able to live a normal-er life because of Cooper.
02:09Every morning when I wake up, he's out in the kitchen making me my smoothie, organizing my pills,
02:14and just making sure that he is enabling me to have a good start to my day.
02:18He wants me to conserve my spoons and energy so that we can use those for something fun together.
02:23He unlocks life for me.
02:25This will be the only thing that we really have until lunch just because she usually doesn't feel good.
02:31She doesn't like to eat, and the meds kind of upset her stomach, so this is just the base layer.
02:36Breakfast of champions, and I think that's it for this morning.
02:40But we have a lot more to get through on this day.
02:44It was January of my junior year that my health took a nosedive.
02:48Cooper and I were going out to dinner or something, and I remember looking at him as we were getting ready,
02:53and I just said, I am in so much pain right now.
02:55Like, I can't go out to dinner, and instead we went to the emergency room.
02:59And then I got sicker. By 2018, 2019, I was really, really sick.
03:05Couldn't get out of bed. Ended up quitting my job.
03:08You were having these crazy pain flare-ups where you were just like...
03:13Passing out, having seizures.
03:15Yeah, you were so dramatic.
03:17That was really scary to not know what I could do to help you.
03:21When I got that call that I was having PAN, it was a, hey, you have a disease.
03:27There's no cure for it. It only gets worse from here.
03:30And it felt like my heart fell out of my body.
03:33The first rheumatologist I saw about it, they told me I had four months to live.
03:36So that then scared the out of me.
03:39Is this going to ruin my life? Am I going to die?
03:42Am I going to have to change everything about myself and how I live?
03:45On the really bad pain days, it is life-stopping.
03:48That's when my body's on fire.
03:50It feels like there's fire ants crawling up my legs, biting me.
03:55That I have my hand over a hot flame or touching a cast iron that's on.
04:01It's debilitating.
04:03Cooper takes on way more tasks.
04:05If I switch into a bad day or if I start with a bad day,
04:08he goes into full caregiver mode.
04:10I think the hardest part of living with chronic pain is that
04:13sometimes you just don't feel safe in your own body.
04:16And that's a very weird sensation to experience.
04:19It doesn't matter how many different things you do,
04:21you're not in the driver's seat.
04:23I am still not feeling good.
04:25I'm a little worried we might need to call Julie today.
04:27All right, let's do it.
04:29No matter how sick I am right now, it could always get worse.
04:32And that scares the shit out of me.
04:34I'm always on high alert.
04:35If it starts to roll, it gets bad fast.
04:37And when it does, I call my nurse.
04:39She's on speed dial.
04:40She just drops what she's doing and she comes here.
04:42Hi, Julie.
04:43Hi, Alex.
04:45Oh, your blood pressure's good today.
04:48Honestly surprised.
04:50I thought it would be not good.
04:52When I get IV hydration infusions,
04:54it's usually when I'm having really high symptoms.
04:57I'm calling her saying,
04:59Hey, I just talked to my doctors and they want me to go to the ER,
05:01but I really don't want to.
05:03Can we try to do an IV hydration at home?
05:05And if that works, then I can avoid the ER and everyone's happier.
05:08Sometimes it kicks in in a couple of hours, but a lot of times my patients feel it right away.
05:14Keeps me out of the ER.
05:15Keeps her out of the emergency room.
05:17First, I was just a content creator and then I started dabbling in the influencer scene a little bit.
05:22Save your spoons and pace yourself kind of thing.
05:25I think it's really important to document my condition when I'm not feeling well and when I'm feeling well.
05:30Cause I really want people to see like what a life with chronic illness looks like in its entirety.
05:35When I looked around online, it was a lot of educational content creators.
05:39What I didn't see was somebody sharing their full life.
05:42The good days too, but also like how bad the bad days were.
05:45And to show how wide of a life we live having chronic illnesses.
05:50I think when a condition isn't visible, it's so easy to jump to conclusions that somebody is faking it,
05:56that they're exaggerating, that their flare-ups are for attention.
06:00Every now and then I get the occasional keyboard meanie.
06:04The big ones that percolate to the top are like,
06:07you can't be in that much pain.
06:09You look normal or like you look happy or you look pretty or whatever.
06:13And the fact is like pain doesn't look a certain way.
06:16I'll be honest, like some days are really hard to find positivity.
06:19I find that when I'm having low moments, I lean on Cooper a lot.
06:24I lean on my family a lot.
06:25Will you get my computer? I want to FaceTime my dad.
06:27This is the perk of having a dad as a doctor.
06:30Hi dad.
06:31Hey, how are you guys? Coop, Alex?
06:34Feeling a little bit rundown cause of this IBIG stuff, but it's okay.
06:39Happens.
06:40My dad is the surgeon in chief at IUPUI.
06:44Having a parent that is in the medicine field when you have such complex rare diseases is so comforting
06:52and like honestly one of the best blessings.
06:54You're unique as you know, right?
06:57You've got a bunch of different things going on, so it's not simple.
07:00I remember crying at a coffee shop with my dad saying, I don't think I'm going to get better.
07:04I'm only going to get worse from here. Why should I even keep trying?
07:07My dad just looked at me and said, medicine keeps evolving, honey.
07:10Like you got to hold hope, sit with it, be with your family.
07:13We're going to get you through this.
07:14And honestly, that was the words I needed to hear at that time.
07:18You just kind of keep checking off until you get to the exact right place and then just stick with it.
07:24I mean, just listen to you over the last 30 some years as you've kind of battled through all this stuff.
07:30Thanks, dad. Good mama squeeze for us.
07:32Yeah. I love you, DC. Thanks.
07:34Get some rest recovery. Okay.
07:36Sounds good.
07:38I think I want people to walk away after hearing my story and know that hope can exist in any situation.
07:45I feel very hopeful.
07:46And I think that has to do with the fact that I have accepted that I have a chronic illness,
07:52that my life does look different than other people,
07:55that I am worthy of getting care and feeling okay and good by whatever means that takes,
08:00and that if I have an unconventional body, I can and get to live an unconventional life.
08:05I truly think that every experience that we have in life is for a reason.
08:12When I look back at being born sick and getting sicker as an adult.
08:18If it's led me to here, I don't think I would change it.
08:20Having a chronic illness doesn't mean your life is over.
08:23I think it's like being grateful, choosing to look at the good side of things
08:28or like still finding the good out of things and just being unapologetically yourself as you deal with it all.
08:34How do you deal with it all?
08:35How do you deal with it all?
08:37How do you deal with it all?
Comments
1