My Body Feels Like It’s On Fire | BORN DIFFERENT - video Dailymotion

Truly

VIRAL podcast host and content creator Alex lives with "debilitating pain" every day - and, at its worst, it can be so painful that it feels like her "body is on fire." Having been diagnosed with six chronic illnesses - all of them incurable - Alex has to carefully manage a host of symptoms every day, from the moment she wakes up. The rarest of her conditions, polyarteritis nodosa (PAN), causes her blood vessels to become inflamed, which can do untold damage to other organs in the body if left unchecked. Although the condition was caught early, it had already damaged Alex's nerves, leading her to develop complex regional pain syndrome (CRPS), an often "unbearable" pain condition that affects her life every day without fail. Alex told Truly: "On really bad weeks, I'm crying when I wake up. It feels like there's fire ants crawling up my legs biting me, [or like] I have my hand over a hot flame, or touching a cast iron that's on. It's debilitating." When the agony is too much, a trip to the ER is unavoidable - but Alex pulls out all the stops to avoid that where she can. Gritting her teeth and fighting through the pain inevitably causes Alex to experience fatigue, so she leans on husband Cooper, who is nothing but supportive and "unlocks life" for her. When Alex has a bad day, Cooper goes into "full caregiver mode" and takes on all the daily living tasks required to enable Alex to push through her flare ups, as well as calling in help if things escalate. And when Truly went to film with the couple, it wasn't long before Cooper had to make that call. With Alex's chief surgeon dad Mark tuning in via video call and home nurse Julie rushing over to give Alex an emergency infusion, will she turn the corner and get through the rest of the day? Or will she face one of her dreaded trips to the ER?  Follow Alex: https://www.instagram.com/alexandrawildeson https://www.tiktok.com/@alexandrawildeson  Tune into Alex's podcast, Calling In Sick: https://www.instagram.com/callinginsickpod https://www.tiktok.com/@callinginsickpod https://www.youtube.com/@CallingInSickPodcast

Transcript

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?

My Body Feels Like It’s On Fire | BORN DIFFERENT

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