My Spoonie Sisters

Resilient AF a Chronicle of Courage with Delicia

April 21, 2024 Gracefully Jen Season 3 Episode 32
Resilient AF a Chronicle of Courage with Delicia
My Spoonie Sisters
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My Spoonie Sisters
Resilient AF a Chronicle of Courage with Delicia
Apr 21, 2024 Season 3 Episode 32
Gracefully Jen

Struggle and healing often go hand in hand, as Delicia's gripping tale of resilience unfolds in our latest conversation. Facing a health odyssey that begins with severe allergies and the emotional scars of childhood trauma, she takes us through her diagnosis and the powerful connection between emotional distress and physical health. Her story is a beacon of hope for anyone facing similar battles as she recounts her experiences with hay made from barley on a Swiss farm, propelling a discussion on the intertwining of past traumas and present health conditions.

Delicia doesn't shy away from the raw realities of living with chronic pain, sharing the complexities of managing Crohn's disease with treatments ranging from Biologics to a holistic approach. Her journey is punctuated by surgeries and the acceptance of a permanent colostomy bag, yet it's her gratitude and unyielding spirit that captivates us. As she navigates the daily confines of the "Spoon Theory," we're reminded of the power of community, meditation, and a mindset geared towards positivity.

Tune in to hear Delicia's insights on the double-edged sword of medical treatments, the risks of immunosuppressive drugs, and the essential role of therapy in her well-being. The conversation also reveals her passion for advocacy against child molestation, highlighting her determination to turn personal adversity into a source of support and awareness for others. Her trilogy memoir stands as a testament to her courage and the transformative power of storytelling, offering a raw and authentic perspective on trauma, resilience, and the relentless pursuit of purpose.

Website - www.kissingasphalt.com

Facebook Page - kissingasphaltmemoir
Instagram - delicianiami_author

Send us a Text Message.

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Show Notes Transcript Chapter Markers

Struggle and healing often go hand in hand, as Delicia's gripping tale of resilience unfolds in our latest conversation. Facing a health odyssey that begins with severe allergies and the emotional scars of childhood trauma, she takes us through her diagnosis and the powerful connection between emotional distress and physical health. Her story is a beacon of hope for anyone facing similar battles as she recounts her experiences with hay made from barley on a Swiss farm, propelling a discussion on the intertwining of past traumas and present health conditions.

Delicia doesn't shy away from the raw realities of living with chronic pain, sharing the complexities of managing Crohn's disease with treatments ranging from Biologics to a holistic approach. Her journey is punctuated by surgeries and the acceptance of a permanent colostomy bag, yet it's her gratitude and unyielding spirit that captivates us. As she navigates the daily confines of the "Spoon Theory," we're reminded of the power of community, meditation, and a mindset geared towards positivity.

Tune in to hear Delicia's insights on the double-edged sword of medical treatments, the risks of immunosuppressive drugs, and the essential role of therapy in her well-being. The conversation also reveals her passion for advocacy against child molestation, highlighting her determination to turn personal adversity into a source of support and awareness for others. Her trilogy memoir stands as a testament to her courage and the transformative power of storytelling, offering a raw and authentic perspective on trauma, resilience, and the relentless pursuit of purpose.

Website - www.kissingasphalt.com

Facebook Page - kissingasphaltmemoir
Instagram - delicianiami_author

Send us a Text Message.

New Intro 2024

2024

Thoughtful premium products for all the immune challenged.
We make living with chronic illnesses easier! BeWell - Thoughtful products for those with an autoimmune disease. (wearebewell.com)

Support the Show.

Website: https://myspooniesisters.com/

Support:
https://www.etsy.com/shop/MySpoonieSisters

Jen:

Well, hello, my Spoonie sisters. It's your host, gracefully, jen, and I am thrilled to bring to you a new Spoonie sisters. Hi, delicia, how are you today?

Delicia:

Good. How are you doing?

Jen:

I'm doing well. I was so excited to have you on.

Delicia:

Thank you, it's Delicia, just FYI.

Jen:

I said it wrong, didn't I?

Delicia:

Everybody does Delicia, everybody does.

Jen:

I don't know why it just sounded so eloquent to say it that way, didn't I?

Delicia:

Okay, yes, people love it that way. I'm my last one too. So they always say ne-ami. I'm like, it's like Miami, but with an N.

Jen:

Oh my goodness. Well, what a fun name, I love. It All right, delicia, how are you?

Delicia:

Thank you for having me on.

Jen:

Oh, I was so excited to have you here, so, if you don't mind, let's just kind of jump in and tell people why we have you on here and what your diagnosis story is.

Delicia:

Yeah, absolutely. So this is actually perfect timing because my second book is about to come out in the next couple of months, and that's where my diagnosis story pops in is in the second book because, as you know, I did a trilogy memoir series and so the first book was sort of my adolescent youth up to age 17, which I was happy and healthy, thank goodness. And you know, it wasn't until 23 that it hit me and 25 that I got diagnosed. So I actually remember the day that it hit me and yeah, it's crazy, right. So I was living in Switzerland at the time and I was living in Bern and it's one of my fondest memories living there. But I was working on a farm with horses and dogs and I had my cat with me, cal, who had come with me from California to Switzerland. And what I didn't realize at the time I found out years and years later is that I have a severe allergy to barley and I didn't know this, and so that's what all the hay in Europe and everything is made from.

Delicia:

And before this happened if you read the first book, you'll see I had a lot of trauma and a lot of stress in my life and a lot of that I realized. In the third book you'll read about my healing journey and I did some breath work and I went back to the time when I was four when I was kidnapped and taken to Baghdad. And that's how the first book starts is a chapter called we're Going to Disneyland. So I was kidnapped and taken to Baghdad when I was four and when I went and did my breath work I saw my child, my little girl, holding all of that angst for the entire year. We were in Baghdad, right here in my solar plexus and just like I saw myself, just tight, my whole body was just tight, tight, tight, tight, tight and all of my fear and anger and frustration and just I don't even want to call it fear, I think it was terror at that point, you know, and it was all in my belly. And so when I'm 23 and I'm living in Switzerland, not knowing all these various things, one of the questions you had in your precursor, which kind of made me laugh, is what would you have done different if you would have known? And one thing I thought about was, like you know, I'm a child of the 70s and 80s, so during that time they were, it was all about eating your wheat wheaties, wheat, wheat, wheat, wheat, wheat. What we didn't know is that our wheat was filled with GMOs. Nobody told us that. We didn't even know what a GMO was back then and I believe personally I'm not a doctor but I think, with all of my trauma and all of the setup that my body had and my cellular memory stored all of that and I read a book by Bessel Vanderkolk which confirmed this later in life but then my cellular memory stored all of that has to somewhere in your body right In the meanwhile I'm like denying, denying, denying. All this happened, all my trauma, all this, all that.

Delicia:

And when I'm 23, I'm in the midst of living in Switzerland, I have this very emotional breakdown because I miss my family, unlike I've ever even imagined that I could miss them like beyond my wildest dreams, especially my mom, like there was no tomorrow. I missed her so much. I felt physical pain that I heard I missed my family so bad. I had a ton of friends there, but there was something missing. It was like there was no mac and cheese, there was no good Mexican food, it wasn't home. You know what I mean. Like it wasn't home.

Delicia:

And I'm a California native and so, as much as I love Switzerland and I love Switzerland, but it wasn't home, and so I was feeling all this stress and, at the same time, breathing in all this barley from cleaning the hay every day, and it was snowy. So when I'm stomping on the cow poop like it's making the steam rise up, so I'm actually like inhaling that, and I I didn't think about this for years later, right, but I kind of put it all together. So this one day, when I was in Switzerland I remember the day very clearly that, like my stool changed. It was always really regular, really normal. That day it just kept coming and coming and coming and coming and I'm like what is going on, like this is not normal, like huge and like not normal, you know. So I was like something's wrong and I worked for someone who was very, very she was a German lady and very staunch and very mean and cruel. I would say she was cruel, you know, and it was.

Delicia:

It was a tough time and so that it that turned into days of turning into diarrhea, and then the blood came and then, you know, the cramping started and I was just like what the hell? Something is wrong with me, so bad, you know, and I couldn't figure it out, even though and I talk about this in my first book very intentionally they kind of flow and they kind of interconnect in places, very intentionally. And and I talk about in my first book how my uncle made me watch him change his colostomy bag when I was 13 and it was very uncomfortable for me and I remember crying out to God, please, no, I never want to crap in a bag, please. You know, and and so when this happened I didn't really put two and two together that my uncle had Crohn's disease. I mean, he actually had been diagnosed with Ulcerative Colitis but he had everything taken out except for a portion of a small intestine. So UC didn't make sense at that point. So I thought he had to have Crohn's. They just misdiagnosed him because it was too early or something, and so you know the fact that he had it. I didn't, I didn't put two and two together and I ended up coming home.

Delicia:

It took about a year and a half to get diagnosed and, you know, took everything under the sun that the doctors told me to take and nothing helped. Nothing helped, nothing helped. It wasn't till my mom fought, even when I went in the house, the doc, I can been seeing the doctor. I went back and with my mother I had 103.4 fever, I had jaundice. I weighed 117 and 3 quarter pounds. I was like skin and bones. My shoulders were bones, were like popping out and I was emaciated and the doctor said we're not gonna admit her. And my mom had to like fight to get me admitted. Yeah, exactly. So when they finally admitted me and I was on the table, he was doing the colonoscopy and I was all whoa, this demo, all is fun, you know.

Delicia:

And then, and then I hear him say like this looks like Crohn's disease, young lady. And by that point I had done the research and I had worked for a biotech company, santa Cruz biotechnology. So I, you know, I had a lot of people in my ear about what it could be, because they would hear me in the bathroom. You know, there's no escaping this at work, there's no escaping it and and so it's so hard to talk about it. But yeah, it's.

Delicia:

When he I still remember it like it was yesterday when he called he said I, this looks like Crohn's disease, young lady.

Delicia:

And then immediately I snapped out of it and I was like no, no, no, because I know, I knew how much worse it was than all sorts of colitis, you know, and I was just he was like I'm sorry, young lady, and I was just like no, no, no, no, no was like it was so devastating.

Delicia:

It was so devastating. But you know, I mean, and after that I even went to to see a different GI and I asked her about getting pregnant and I was, you know, at that point I was 25 years old and even though I'm gay, I still want, thought about having kids and like you know, and, and so I asked this doctor you know if what she thought about me having kids, and she just like looked out the window, she couldn't even look at me, you know, and so it was really awesome, it was rough well, and to be 25 years old feeling like everything that you look for it as a future is just being torn away from you yeah, there's no way to describe that a life-saving looking, you know, and they tell you there's no cure, but we can, you know, treat it with medication.

Delicia:

But I didn't realize at that time that that didn't mean treating my pain, you know, and if the medication didn't work, I didn't realize how intense the pain would get. I mean, I just had surgery on a minor like outpatient general kind of go into that doctor's office surgery on a fistula which I didn't know was a fistula until Thursday. I kind of had an idea but I wasn't sure. But the doctor was just like, you know, they don't tell you how much pain that you're gonna be in and about the fistulas and about, you know, all of the different things that it can do to your body the arthritis, the this, the that. It's like you know we can treat it with medication. But can you, you know, and so that you know, I tried for a long time to just I hadn't didn't take meds for 20 years and I was doing okay, you know I would still be in pain. I would treat it with with, mostly with what I put ingested into my mouth. I, I watched the food that I eat and tried to do really good. But you know, I mean, I don't think that, and I come to the realization of this because I can't beat myself up, because I know I did everything in my power possible to help myself, even like, even though Prenda's own makes me want to commit suicide. I took it in 20 because I was so sick.

Delicia:

I had done a hyperbaric chamber which really helped the Crohn's disease.

Delicia:

I was in really bad straits and I actually did a GoFundMe and my friends helped me and I did 67 sessions in a hyperbaric chamber and I felt the best that I had felt in 30 years, you know, and I was pooping solid and, I'm sorry to say, but like I had ridges and it was like what is going on here, you know.

Delicia:

I felt I had energy. It was amazing and I was planning on going back once every six months for a maintenance dose, but COVID hit and they closed and then I and this is all in my third book and then I I couldn't get treatment there, so I had to turn to medication and the only thing the doctor could give me is Prenda's own, and so I took the Prenda's own and, as I was weaning off of the Prenda's own, I started the Prenda's own, probably in November 2019, august 5th of 2020, while I was still on the Prenda's own, my colon ruptured and I had to be rushed to the hospital and I was at the hospital, rolled in the door at 1202 and on the operating table by 1205.

Jen:

Oh, wow.

Delicia:

Yeah, I was serious, like, and I almost died and it's really scary. I have the pictures of the perf that was in my colon and and so now I have a colostomy, my very own colostomy bag for life, just like my uncle. So it's, you know, kind of interesting how things come full circle and you just that's why I call my series Resilient AF, because life throws you a whole bunch of shit and we just have to deal with it as it comes, and and and roll with the punches and be as happy as we can be and it's hard to be when we're in so much pain. So I love this Spoony theory and like how it works and how to explain it to people. You know, based on that, it's really an interesting concept.

Jen:

Absolutely, and so you know you've been going through this, you know as early as age 23, and now here you are. You know your, your worst fear happened. How did you work through that?

Delicia:

Yeah, it's a great question. At first I was. I was angry, you know, and it was real hard to look at this bag when I woke up in the hospital. Oh, I've never talked about this on a podcast before, so, yeah, I was really real hard to look at it. I was really ashamed. I had already felt like I lost all my dignity around this.

Delicia:

The first time I had to be in the hospital with Crohn's, when I was with somebody with just a freaking headache and I was smelling up the room, you know just, and crying out with just agonizing, crushing pain. That's what I was going to say about the surgery earlier. Is that the aftermath of that? I felt like, is this the surgery pain that people take pain meds for? Because this ain't nothing compared to my Crohn's cramping, like it's like 10 million times worse. You know, it was just, like it's horrific. I can't even put it into words what Crohn's pain feels like, you know, and I tried in my books but I can't, I can't explain it to people if they are not living with it. That's. Anybody who has Crohn's understands, you know. But I just kind of, as time went on, I realized that the bag saved my life and I named her. I named her Aedia that's my stoma's name after the Sarah McLaughlin song and if you listen to the words, where you know the words, you'll understand why. But it's a beautiful song. I reached out to Sarah McLaughlin on instagram but I don't know if she appreciated that or not, but I told her I named my stoma after song because, like, I thought that was a pretty like freeing, elaborating thing for me to do. You know, I think that was the first step. For me was like acceptance, naming her and giving grace and gratitude to my, my bag.

Delicia:

And then once I realized that my life was starting to get a lot better, that I wasn't in the bathroom for 20 to 40 minutes at a time when I went out with friends. I didn't get the looks when I came back to the table of like, oh my God, are you okay? You know, I didn't feel that stigma anymore and it started to feel good. Of course, I had a different kind of stigma with the bag, because I have a lot of challenges wearing clothes now around this thing. I have a lot of challenges, but the benefit is I'm not running to the bathroom all the time, I'm not having to sit in the restroom for 20, 30, 40, 50, sometimes three hours at a time. It makes a big difference, and so I'm grateful for it.

Delicia:

Now, like one of the first things I was able to do was I went with my brother from another mother, tom he's actually mentioned in the books. We went kayaking and I thought to myself I couldn't have never done this before. There's no way I could have sat in a kayak with strangers and been in the middle of the ocean and not be stressed out about having to poop straight up, you know. So, yeah, it's been a challenge, but I think now I embrace it. Like everything else in my life, I've come to know that there's a reason or a rhyme for it, one way or another. That's why my third book is called the Queen of Silver Linings. People sometimes get annoyed with me, but I don't care, because you know what. There's always a positive. Sometimes you have to look really, really, really hard for it, and I haven't quite found it yet with Crohn's, but I'm still looking, I'm still looking. I haven't given up.

Jen:

You're gonna find it and then you're gonna tell us all about it.

Delicia:

I am. I hope so.

Jen:

So, now that you have this bag to deal with, do you still have any kind of pain?

Delicia:

I do. I just got out of hospital. I was in November for 11 days and, like I said, I have this fish shula now and I'm on Biologics, which is really scary for me because my brother died of PML, which is the main side effect of all the Biologics, and there's a thing that 50% of the population has in their body called the JC virus, and if your immunity gets low enough, the JC virus can flip to PML without you knowing it. And then my brother died, literally within two months. He died at 45. So yeah, it was, and he had AIDS, so his immune system was very low. But yeah, I'm in the same boat now where I'm on Biologics.

Delicia:

It's scary, but I had to say you know what, like I have to figure out quality of life because I didn't have any. Even with the bag I didn't have any. I was in intense pain every single minute of every single day, and now with the Biologics, that's helped me quite a bit. They also found something called a CMV when I was in hospital Psydolo Megalovirus or something like that and so they had me on antiviral. So for a while I'm like I don't know what's working, but something is, you know, and so I'm feeling better unless I ingest or eat something. You know I drink or eat something that's not good for me, like sugar, which I have a weakness for. But Don't we all Can't beat myself up. I gotta love the chocolate.

Jen:

Absolutely, and you know we gotta treat ourselves a little bit.

Delicia:

Exactly. I tell myself that you know what. You dealt with a lot of shit in life. You're allowed to go get ice cream every now and then.

Jen:

It's fine you know we might pay for it later, but it's good in the moment.

Delicia:

Yeah, and I find that if I eat like a little bit of sugar, I'm okay. But my problem is I can't just eat like a little bit of sugar. It's like a box of Pringles, you know, like you can't just eat one, they're gone by the time. You know. That's my problem with sugar. Don't give me a box of C's candy, please, and thank you.

Jen:

You know, I'm that way with Girl Scout cookies.

Delicia:

Oh, I'm so glad I stayed by them having a gluten problem.

Jen:

I have a thing for the tag-alongs the mixture of the chocolate and the peanut butter.

Delicia:

Oh, I used to love the Samoas.

Jen:

Oh, yeah, my husband loves those.

Delicia:

Delicious, but I can't have them cause of gluten, so that makes it easy for me.

Jen:

Yeah, absolutely.

Delicia:

People always freak out about how I'm so strict with what I eat except for the sugar but because I always tell them like if you felt the pain that I felt after you ate that food, trust me, you wouldn't eat it either, you know.

Jen:

Yeah, Absolutely. And I don't even have Crohn's, I have Irritable Bowel, which they thought was colitis years ago.

Delicia:

I'm so glad it wasn't.

Jen:

It's been a battle, it's been unique, but I'll tell you just from my experiences. You eat something one time and it makes you feel like death rolled over and you never wanna eat it again, or you wanna avoid it for the next three months.

Delicia:

I think I haven't had popcorn for probably 28 years.

Jen:

Oh, wow.

Delicia:

Yeah, like no desire, because I know how it feels. Yeah, it's crazy and I stopped eating meat because of that too. I mean, I eat fish but I stopped eating meat in the year 2000, because I felt like I feel like beef and chicken and pork and stuff is like hurting my stomach and I could have been wrong, but I don't know. Like I said, I don't know that we have much control. No matter what we do, it seems like this thing has a mind of its own, honestly.

Jen:

Absolutely, and I think we still yearn for some way of controlling how we feel and we're gonna take all the steps that we can to make it a little better, but that doesn't mean it's always going to work.

Delicia:

Right, exactly.

Jen:

So what does your Spoonie Tool kit look like?

Delicia:

I do a lot of meditation. For me that's a really key factor. I notice if I stop meditating, I change as a person, my life around me changes. The way people treat me change. It's really interesting, actually, and so that's helped a lot.

Delicia:

Besides that, I don't know, there's not a lot that once I I guess my family is another thing. I would say my friends, who have been my family, who are there for me, who understand me so much more than my blood family, because they've taken the time to care enough to understand me and they get where I'm coming from. They know, like some people, like my best friend, she can see it in my face, you know, and immediately she's like are you okay? I saw pain and I'm like do you know how much I appreciate that, like so many people don't see it. You know, my boss is also one of my best friends and I've worked for her for almost 20 years and she sees it and she gets me.

Delicia:

Like she said to me when I started taking biologics. I was trying to explain it to people because I was so. I was beside myself. I couldn't fathom the poison that I was putting in my body. It felt like I was intentionally poisoning my body and I didn't like it and I still don't like it.

Delicia:

And she said to me you know what everybody else was telling me you should just be happy it's working. You should just be happy it's doing something. You should just be. And she said to me no, I get it Because you're like the Amish. It's like living your whole life without power and electricity and now you're told you have to use this in order to survive. And I'm like that's exactly what it is, you know it's like. And she said it's almost like going against your religion. It's like your internal great. And I said that's exactly what it is. I'm such a natural I don't even like to take Tylenol and now I'm putting biologics in my body. So, yeah, I have to. Yeah, my friends are really people that I lean on and somebody that I go to when I when I need, when I need to reach into that toolkit for sure.

Jen:

Now you're you're taking biologics. I want to ask you this, because I'm sure listeners are going to be curious Are you doing infusion or are you taking it orally?

Delicia:

I'm doing the Inflamex, which is the new version of Remakade. I wouldn't have done it because the part, the reason why I haven't done it for so many years is because I've been so paranoid about PML. But my doctor has been phenomenal. I mean, he's an anomaly for Kaiser, he is mind blowing GI guy and he did so much research and every question I asked him in the hospital he came back and had an answer for. And this that I'm taking is the lowest risk of PML biologics that's out there by far and it's one of the oldest biologics that's out there as well and it's not one of the ones you see all the commercials for. It's called Inflamex or fliximab Infliximab is what it's called oh, infliximab, yep.

Jen:

Okay, so what exactly is PML?

Delicia:

Progressive Multifocal Lukoin Syntopathy. Basically it is a virus that eats away the myelin sheath in your brain. It's basically a really rapid Alzheimer's. So my brother I talked to him, this is my brother that was put up for adoption that I met when I was 15. He and I were super close, closer than my brother. That was that I was kidnapped with and grew up with, although he and I are close now. But my other brother and I were tight, you know.

Delicia:

But he called me from Florida one day and he sounded drunk as a skunk and I was like are you okay? I'm sorry, I only have one drink and I'm like, whoa, something's wrong. About a week later, my then 10, 10 year old or 11, maybe 12 year old nephew yeah, he was 12 at the time he called me about a week later and said Auntie, my dad's in the hospital, he just had a stroke. And I was like, well, that's weird, because when he called me, like a week ago, I thought there's something wrong, you know. And well, turns out he hadn't told anybody that he had AIDS for 10 years. Yeah, and I found out after his doctor faxed his paperwork to my, to my work, and I got his paperwork and I'm like this guy who's come over for Thanksgiving and cut himself like around my kids never said that he was HIV positive. Like, yeah, mind blowing, right, so mind blowing. So I even asked him straight up but he said no, no, that paperwork must be wrong. And I'm like, yeah, crazy right. That wasn't until we were in the I had flown him out from Florida to here and we were at the ER that the ER doctor says so, mr Simon, it looks like you have HIV for the last 10 years. And he said yes, and I'm like I'm going to kill you guy. But like, yeah, crazy, right. And she's like, how do you get it Sex? I'm like, oh, my God, you're such a jack. So like yeah, just crazy.

Delicia:

But he after that he got in the hospital. The doctor said like we're going to do a surgery to make sure that's what it is. They had a cut open his brain. They took a little piece of it and they biopsied it. And they said usually, once we, once we check it and we, we verify, that's what it they called. The whole family in said once we verify, that's what it is. It's about two months before they pass and I ended up doing like an Oprah's Big Give thing for him and did like a last wish thing at Giant Stadium for him and stuff that giants were amazing in. And then he passed almost exactly two months to the date of that and he had just like he just had his 45th birthday, like a week prior.

Jen:

Wow.

Delicia:

Yeah, it's crazy.

Jen:

And I feel like that's not something that doctors warn us about.

Delicia:

Never and honestly, it's not something that doctors even know about. I know more than half of the doctors do. It's crazy. And like I've asked my GI. My GI is like way back when, when I got tested for it, for the, for the virus that switches right. I asked my GI and he's like Well, I'm going to have to send you to the infectious disease doctor. I don't know how to do those tests. And I'm like how do you not know when you deal with people who have Crohn's disease and all the research is going to be biologics, nothing but biologics. By the way, all of the money for research is going. I've had several doctors and gastroenterologists telling me this all of the money for research is now going in the direction of biologics, that's it, nothing else. And like, how do you not automatically test people for the JC virus? How do you not? Because I asked Dr Chow, my doctor. You know how do I check myself To make sure that my levels aren't getting so low that it's not going to flip? And he goes there's no way we can do that honestly. But they are checking. They're checking my blood every month, they're checking my white cell count. But like there's got to be with technology. There's got to be a way to check that stuff, to make sure, like, oh, your immunity is going a little too low, let's, let's hold back on the medicine a little bit this time, you know, and it's okay if you're a little bit sick. We don't want you to die with PML, you know. I mean, there's ways to check that. Why aren't they checking it?

Delicia:

I had a fight, you know, I had a fight to get my JC positive negative test and it came back negative. The first two times it came back negative and I don't know why. But Kaiser retested it again and I didn't even know this until I went back to the doctor and he said, oh, no, you're positive. And I said I thought I was negative. I read it on my test and he goes no. But then they resented in for a deeper dive test and you're positive Crazy.

Jen:

And you know I've been on Biologic since 2013. First time I ever heard about it was from you today.

Delicia:

Are you kidding, I'm sorry. Like I started a website called whatthehealthnet, even though it's not up and running right now. Like I feel like I should get it back up and running because what the health? You know, like what is going on in this country. How do doctors not inform you of this? My brother died of this and, yes, he had AIDS and yes, your immune system has to be really low, but some people do get to that point on and the other. Here's the other thing when I was taking my, I was taking the biologics and I was taking the antiviral at the same time. They didn't tell me the antiviral also lowered your immunity. So as soon as I told the, the infectious disease doctor, about my brother's issue that he died of, I told her exactly all this. She freaked out and said you need to stop taking the antiviral immediately. So there's something to it, it's not, you know.

Jen:

Yeah, absolutely. And you know, for most of my illness life I have been on a mixture of methotrexate, which is like a low dose chemo mixed with a biologic, and at one point for me I think it was 2015 or 16 I was on actemra and it lowered my white blood count so much that they were like you can't take this anymore and this is not good for you. This is, this is scary, scary.

Delicia:

Yeah, they shouldn't even be doing that to our bodies, like there's some sort of alternative, but there's no money going to any sort of alternative. It's mind blowing. You know. It's mind blowing because before my colon ruptured I actually had a GI who fired me. She said I can't be your doctor anymore because one day she was right, one day you're gonna go into an emergent situation. You're gonna your colon's gonna rupture and it's because I don't have any medication that I can give you, because all I have is biologics, imprendisone and everything else you're allergic to, like all the sulfur drugs, all the toucher dogs. She goes, I don't have anything I can give you and I'm like she goes, I can't see you anymore as a patient because I don't want to be there when your colon ruptures in the hospital and I'm like she's scared of you.

Delicia:

Yeah she did. I kind of wish she was there. But you know, I mean, what can I do? I'm scared shitless that I'm gonna get this PML I still am, you know. But what can I do? It's a quality of life, you know. Either I spend all day in pain and bed all day, you know, or I'm up and I'm able to be resilient and do what I got to do and take a chance, and I guess life's all about taking chances. So that's what I did.

Delicia:

I took a chance and it's, it's been worth living. I mean, I went to a dance the other day with my friend and I wore a mask the whole time, of course, you know, except when we're outside. But I mean, like it's worth it. I go to dinner with people and I wear a mask the whole time, but it's worth it just to have that social interaction, to feel like you're living, to feel like you're alive, to feel like you're living a life worth living. As they say in DBT, which is also a big part of my toolkit dialectical behavioral therapy it's an amazing tool and therapy has been amazing tool for me in general, but DBT has been just really amazing well, I want to make sure that we don't leave anything out.

Jen:

So we've we've gone through. You know your journey and we've talked a little bit about your books. What inspired you to start writing these books?

Delicia:

I love this question. It was actually so and I know everybody says this about their books so it sounds so stupid and cliche. But like for the last 20 years I kind of believe in psychics and my ex-girlfriends have sort of gotten me that as presents, his psychic readings and stuff and about three to four I think different psychics in various times of my life have told me you need to write your story. Sorry, that's my 23 year old cat. I can't really control her much. I just kind of.

Jen:

Okay, let her roam. I love cats.

Delicia:

You're a good company and she's still jumping and stuff. She's almost 23, so I'm like you do what you want to do, so, but where was I? Where was?

Jen:

I. You were talking about the psychics oh yeah.

Delicia:

so they about three to four of them have told me write your life into a story. It's going to be made into a movie and I'm like, whatever, you know, like I'm 20, like okay, whatever. And then throughout my life they just keep telling me this and I'm like now I'm in my, you know, 40s and I'm like what do I have to write about? My life has been nothing but negative, you know, negative, negative, negative. I had like a horrible childhood and I grow up and then I get Crohn's disease and I deal with this Like it's been horrible. Why, who wants to read about that? You know, I thought to myself like God, that's awful, no. And then when I was 48, I think I was 48, I read Bessel van der Kolk's the Body Keeps the Score. I read a lot of self-help books and that book was amazing. It brought up so many aha moments for me.

Jen:

I keep hearing about this book from people I actually ordered it.

Delicia:

Oh my God, it's incredible. So it's all about how your cellular memory stores your traumas in your body and it comes out as something else and this kind of ties into what I was talking about earlier. And I realized so my whole life. People would ask me oh my God, you were kidnapped. That must have been so traumatic. And I would always be like I don't know. I was four. How am I supposed to know? You know, I was four years old. I don't know. And I do know, though I didn't realize that my body knew, you know, and that's why I was able to remember it in my breathwork, which I did years before I read this book, by the way.

Delicia:

And then I read the book and I was like, oh my God, I had a pullover on the side of the road. I was probably only a block from my house, but I had to pull over literally on the side of the road and say I've had PTSD for 44 years and I didn't even realize it and that's a huge chunk of what's wrong with me. And I kept reading and I read about intermittent explosive disorder, which I had never even heard about. That is usually comes up in people who have been sexually abused and I'm like, oh my God, I'm not a crazy lunatic, that's why I freak out sometimes. It's not cause I'm insane, it's because I have this weird disorder. So I was able to put these names to things right and it was able to give me some clarity about a lot in my life.

Delicia:

And then I looked at, I looked him up. I saw they were doing a retreat at their house like the following month. So I wrote this letter to them. I didn't know that their retreats were booked up for years in advance. I had no idea. I wrote this letter to them explaining what had happened and I didn't know until I was there that they moved stuff around and did things to squeeze me in that weekend. And so I flew to Massachusetts and that weekend, that weekend, changed my life. It was. It was pretty phenomenal.

Delicia:

It was a group group therapy thing and it was just it was an eye-opening experience and I realized that I've made it through so much in life and then I'm so resilient and that I do have a powerful story to share because at the end of all this I'm a happy, well-adjusted person who enjoys life and appreciates sunshine and butterflies and the ocean and puppies and rainbows, you know, and I'm just a really happy like.

Delicia:

It doesn't take much to make me happy. And this, this thing I don't know why it made me realize that and after this weekend I started writing. It was that was in November, and in December my nephew and I went to Big Bear and spent Christmas in a cabin and I started writing in that cabin in Big Bear, which is ironic because the first chapter in my first book, kissing Asphalt, is we're going to Disneyland. My mom was actually with her boyfriend in Big Bear on a ski trip when my father kidnapped us. I didn't even think about that till afterwards, but it's like it's so crazy how the universe just connects things, you know, and if we take the time to really look, you can see that.

Jen:

Absolutely, and I think you touched on something that I tell people all the time, and I don't put it in my own words, but I always tell people, no matter what our illness, whatever we've been through, we have so much to offer and sometimes it might not feel like it because we're mourning the life we wanna have or we used to have, but we still have so much to offer and people to be there for.

Delicia:

Exactly. And what I realized is that I can turn the tragedy into my life, into beauty. And I can do that by doing exactly what I'm doing and being extremely vulnerable and putting my life out into the world and making myself available to people and saying I'm here if you wanna talk. And the next phase of this, which I just realized that I have huge passion for, is child molestation. I wanna go into the schools. I wanna start talking about pedophilia, because if we don't start talking about it, it will never change and it needs to change. It is so bad.

Delicia:

In this country People talk about drug use, people talk about serial killers. But you know the serial killers and the drug users half of them wouldn't exist if we were able to reach them as kids and give them a voice to say no, don't touch me, you know. No, it's my body. And how do you reach somebody who's six, seven years old that this is happening to? They can't even compute what you're saying to them. Their mind's not even advanced enough to understand what you're trying to explain. So how do you? It's like something I'm grappling with now. I've figured this out and where I'm supposed to be helping in the world. But how do I do it? I need to. I've already reached out to one organization here in Santa Cruz who's gonna have me help them at their summer camp.

Delicia:

Talk to high schoolers. I wanna talk to high schoolers. I wanna talk to middle schoolers. I wanna talk to younger kids if I could, because it started happening to me at seven, you know, and at seven nobody was talking to me about that. Nobody was talking to me about grooming and how I felt like the lowly scum of the earth by everybody else around me, except for this guy who lifted me up and made me feel so special and made me feel like I was the most beautiful thing on the planet and that my opinions mattered and that my voice meant. Something, like where everybody else made me feel like I was nothing. You know, like if I had heard that when I was seven, maybe, just maybe it wouldn't have taken me 50 years to figure out that that's what he was doing, you know. And so I found what I wanna do, but I just don't know how to do it. I'm trying to figure that out right now and, yeah, I wanna help. I wanna help in a big way.

Jen:

Well, it sounds like you're taking those steps to do that, and I'm anxious to find out how that goes.

Delicia:

I think it's gonna help me too with my own dis-ease, because, you know, I tell you, I've never felt as much joy inside my heart. Never in my life have I felt as much joy, except maybe when I came back from Baghdad and saw my mom for the first time. But like when somebody sends me an email, says thank you for writing your book, it's helped me, or thank you, I didn't realize that my little girl needed help and I'm getting the help that she needs. It's like I'm not a crier, but it does that to me every time, because it's just like I can't believe I did it. I can't believe I took something that was so horrible for me and made it into something good and something that can change the world. Like that's what I wanna do. But I'm just me. I'm just a little me, but I'm trying.

Jen:

You're like a butterfly.

Delicia:

Let's hope I flutter by, we'll butterfly and flutters by, there we go.

Jen:

Okay, where is the best place for people to fight and connect with you?

Delicia:

So I'm at kissingasphaltcom is my website and you can pre-order the Not my Circus right now if you want to. From there, you can get on my email mailing list and also you can reach me at Instagram deletioniamy underscore. Author or resilientaf underscore. Memoir or kissingasphalt.

Jen:

Okay, yeah, well, make sure to add that in the show notes so they can easily find it. But thank you so much for taking the time out of your day to share it.

Delicia:

Thank you.

Jen:

Even just a snippet of your story. Thank you so much.

Delicia:

I'm so. I was so much, it was so much fun to talk to you. Thank you for having me on. I'm really thankful for you and people that do podcasts, as we reach so many more people than we otherwise would be able to, so I really appreciate it, thank you.

Jen:

Well, it was my pleasure and my spoony sisters. Go check out Deletia. You're not gonna be disappointed. Until next time, don't forget your spoon.

Delicia's Diagnosis and Healing Journey
Living With Chronic Pain and Resilience
Acceptance and Gratitude for Life's Challenges
Navigating Chronic Illness Challenges
Health Challenges and Resilience Through Writing
Resilience, Trauma, and Finding Purpose

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