My Body, My Opp (feat. Nikki)

Summary

Gettin' Grown – "My Body, My Opp (feat. Nikki)"

Host: Jade (“A”), Guest: Nikki (“B”)
Date: February 17, 2026
Network: Loud Speakers Network

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Episode Overview

This episode of Gettin’ Grown centers on the lived experiences of Black women navigating chronic illness and the healthcare system. Host Jade is joined by Nikki (aka “Corporate Barbie”), who shares her complex journey with chronic autoimmune diseases, offering practical strategies and real talk for self-advocacy in medical spaces. The discussion weaves together Nikki’s personal health narrative, the brutal realities of being a Black woman patient, and tactical advice—delivered with wit, honesty, and the uniquely Blackity-Black tone that defines the show.

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Main Discussion Themes

1. Black Women and the Medical System

[07:40 – 10:37]

• Jade grounds the conversation in the context of Black women’s historical and present-day struggles with medical racism and neglect.
• Reference to Shaja Washington’s death from medical negligence as a Black woman giving birth (“her family … ripped from her family. Her child will never know her in the physical sense.” [09:50])
• The importance of self-advocacy and community knowledge as survival tools.

2. Nikki’s Health Journey: Misdiagnosis, Lupus, and the Minefield of Chronic Illness

[13:23 – 21:39]

• 20+ years of complex health issues, initially misdiagnosed as multiple sclerosis, culminating in a lupus diagnosis after relentless self-advocacy and meticulous record-keeping.
• Description of lupus’ impact: daily pain, organ inflammation, cascading effects (“my immune system attacks connective tissue throughout my body … my organs are constantly under attack by my own immune system” [13:43])
• The challenge of “rare presentations” leading to fragmented, siloed care; specialists treating individual symptoms, not the whole person.
• The triggering effects of COVID-19 and “Long Covid” on her condition.
• Self-research: assembling all records, tracking patterns, creating a PowerPoint deck for her specialist ([18:40]).

Memorable Moment

"I put these records on my laptop. I looked at every blood test … I came up with a handful of diagnoses that I thought were likely. And I found a specialist at the Cleveland Clinic ... I actually took a deck, I took a PowerPoint deck into this appointment." — Nikki, [19:07]

3. Building a Care Team & Navigating Medical Bureaucracy

[21:39 – 27:29]

• Proactive “interviewing” of doctors, switching when bedside manner or willingness to discuss is lacking.
• The necessity for “natural curiosity” and partnership from doctors; willingness to review research findings together.
• Advocacy leading to successful interventions: vaginal birth after myomectomy by finding a willing OB-GYN ([25:23]).

Quote

"Treat finding your care team, if you are someone like me, as interviewing people the way that you would for any other job that you are hiring for." — Nikki, [21:55]

4. The Daily Grind: Symptom Management, Medical Procedures, and Unseen Labor

[40:32 – 56:58]

• Description of both visible symptoms (rashes, bruises) and invisible suffering (exhaustion, pain, cognitive changes).
• Early struggles to be believed even by family (“even with that, it was an uphill battle to even convince people close to me that, like, no, something's really, really wrong” [45:58])
• The emotional toll: learning not to “push through” and mask the reality.
• The elaborate medication regimen and life-changing effect of finally accessing appropriate lupus medication (Benlysta infusion).

Quote

"These people, intentionally or not, these people will let you die. They will let you die. They will let you suffer. They will let you languish. And you are the only person who will care about you the way that you do." — Nikki, [28:30]

5. Navigating Perimenopause and Compounding Health Realities

[57:15 – 63:37]

• The added challenges of perimenopause layered on top of chronic illness.
• Importance of established relationships with care providers for rapid response (“[OB-GYN] immediately was like, yeah, say less. We need to do something about this.” [59:06])

6. Self-Advocacy: Practical Strategies & Bullet Points

[65:35 – 73:53] Nikki provides actionable self-advocacy strategies:

• Fight for Yourself: Don’t give up or settle; your life is worth agitating for.
• Build a Care Team: Seek providers who listen, are curious, and see you as a partner in care.
• Presentation Matters: Especially early on, show up to new appointments “like you are loved,” as anti-Black biases in medicine are real.
• Follow Up Behind Care Providers: Read your own medical records, results, and surgical notes (“I found so many things in the records that somebody put in a clinical note ... that no one told me” [68:52]).
• Become an Expert on Your Conditions: Stay informed, research, and bring new findings to your team.
• Acknowledge & Work with Your Privilege: Nikki acknowledges the role of insurance, education, and mental capacity in her ability to advocate, recognizing not all have this access.

Memorable Quotes

"Show up like you are loved and cared for and show up like you have pride in yourself. And I hate to say that, but they do not treat us the same as other people.” — Nikki, [67:44]
“When something hits your MyChart, go read it.” — Nikki, [70:20]

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The Psychological Toll & Relationship with Body

[34:21 – 38:59]

• The fraught relationship with a betraying body: “It is a really hard existence when your ultimate biggest op is your own body.” — Nikki, [34:28]
• Acceptance, begrudging respect, and humor as survival tools: “Sometimes you want to get in the car and you want to drive away from it all and say this shit, but the bitch is coming with you.” ([35:33])
• The twin pulls of frustration (“I just want to be normal”) and gratitude.

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Advice for Others

To Young Black Women Entering a Chronic Illness Journey
[83:59 – 86:24]

• Toxic positivity isn’t helpful; some days, it just “sucks.”
• “You are stronger than you know, whether you want to be or not … you will be [here], as long as you are physically able to and continue to make the choice to be every day.”
• Radical boundaries are essential; learn to say no, guard your energy, and accept your needs.

To Those Who Love & Support People with Chronic Illness [86:24 – 93:15]

• Believe them. Believe their pain and fatigue.
• Do not compare your tiredness or pain to theirs (“do not say, I’m tired too, because you have no idea” [92:19]).
• Offer practical support: go to appointments, pick up household slack, avoid giving unsolicited advice or random cures.
• Respect their boundaries and need for rest (“If someone says ‘I can’t,’ accept that and step in and step up.” [88:08])
• Don’t offer “miracle” cures or compare your auntie’s condition.

Notable Quotes

"If you are in a relationship with someone who is not able to do things that they used to be able to … accept that you're gonna have to pick up some slack … You really have to have a giving spirit." — Nikki, [87:02]
"Nobody wants to feel better than we do. We are doing everything in our power to feel better." — Nikki, [90:24]

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If Nikki Could Redesign Healthcare

[77:47 – 80:23]

• Advocate for a standard of care mirroring ICU for multifaceted cases: a team of specialists who consult together, baseline system checks for all new chronic/complex diagnoses, ongoing multidisciplinary management.

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Notable Quotes & Memorable Moments

• On self-advocacy:
  “I respect doctors immensely … where my knowledge is equivalent to them is my own body that I have had for my entire life.” — Nikki, [29:19]
• On surviving out of spite:
  “There are a lot of times when where I am existing off of sheer spite and just, like, negative vibes. Like, I'm just here because I want to prove that I can still be here.” — Nikki, [80:33]
• On the price of survival:
  “My infusion is $5,000 a month … if I didn't have insurance, it's $7,000 … Last week I spent $500 out of pocket for imaging and medications.” — Nikki, [94:05 & 95:10]
• On beauty and spite:
  “I'm going to be a bad bitch, period … That is a mechanism of spite. It is pure spite.” — Nikki, [83:54]
• On health information overload:
  "Don't talk to me about a turmeric pill, bitch. I took turmeric pills. My fingertips were staying yellow. It did not fucking help. Shut up." — Nikki, [91:00]

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Practical Self-Advocacy Strategies (from Nikki)

[66:13 – 73:53]

1. Be relentless: Don’t settle.
2. Build (and fire) your care team as needed.
3. Look the part—especially early on.
4. Follow up: Read all of your records and labs yourself.
5. Become a student of your body and your conditions.
6. Leverage trustworthy friends/family to help understand medical jargon.

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Timestamps for Key Segments

• [07:40] – Black women’s medical discrimination & introduction to Nikki’s story
• [13:23] – Nikki details history of symptoms, misdiagnosis, and self-advocacy
• [19:07] – The PowerPoint deck for the Cleveland Clinic
• [21:55] – Building and “interviewing” her care team
• [28:30] – “These people will let you die”: the necessity of self-advocacy
• [34:28] – “My biggest op is my own body”: psychological realities
• [57:15] – Added challenge of perimenopause
• [65:35] – Bullet-pointed self-advocacy tips
• [77:47] – “Redesigning” the healthcare system
• [80:33] – The “spite survival” philosophy

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Where to Find Nikki

• Threads: @silent.perhaps – “I am more than happy to answer questions or talk to anybody or encourage anybody, you know, on this journey.” [97:08]

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Tone, Style, and Final Notes

This episode is unfiltered, compassionate, and deeply informative. Jade and Nikki blend warmth, Black cultural specificity, gallows humor, and plenty of side-eye for the medical industrial complex. For Black women dealing with chronic health issues—and those who love them—it’s an essential listen, full of practical wisdom and solidarity.

Episode title idea:
"Silent, Perhaps (Shut the F** Up a Little More)"* (see [97:08]), or Jade’s alternate, “You, Whoever You Is, You Too” — both nodding to the episode’s big sentiments about survival and boundaries.

Transcript

[A]

Your little one grew three inches overnight. Adorable. Also expensive. Sell their pint sized pieces on Depop and list them in minutes with no selling fees because somewhere a dad refuses to pay full price for the clothes his kids will outgrow tomorrow. And he's ready to buy your son's entire wardrobe right now. Consider your future growth Bird budget secured. Start selling on depop where taste recognizes taste. Payment processing fees and boosting fees still apply. See website for details.

[B]

Hi, I'm Kaelyn Coleman, winner of Target's HBCU design challenge. This challenge moved me closer to my dream of becoming a fashion designer through mentorship and support. You can find my design along with creations from other black founders in Target's Black History Month collection.

[A]

So many ladies in the room.

[B]

All.

[A]

That I can see is you this dime pieces in this place but you came through and took the case. Cause you know what I like and you know what I want and you know how to get it Let me in your world Cause I know what I like and I know what I want and I know how to get it Let me prove it to you one on one I'll take it away. You won't take it. You want to say sexual chocolate. Sexual chocolate everybody.

[B]

That good?

[A]

Oh, have you watched the Eddie Murphy documentary?

[B]

I did. I did.

[A]

Oh, I just watched it. It was so good. It was so good. We'll talk about it in a minute. Praise the Lord, niggas.

[B]

Praise the Lord.

[A]

I'm back again to torture you all alone. Well, I'm not wholly alone. You know, I do have another wonderful guest. Co host, one of our sister friends, my nearest and dearest Nikki, also formerly known as Nicole, also known as Corporate Barbie Online. If you have been a patron, what would you call a person who was on Twitter? A tweeter. Well, if you were on Twitter, in the highlight of its days, before it was the Nazi platform that it is now, then you knew our girl, Corporate Barbie. She came through all the time with colorful commentary.

[B]

Such a polite way to.

[A]

Put it, intelligent commentary, wit. She really shit on you hoes a lot, you know, with her wealthy ways. She was always shaming the masses with her impeccable Christmas trees and decor. And she is here to bless us at the kitchen table today. Welcome.

[B]

Thank you for having me. Let me just be clear that I didn't say any of that. She said that, not me.

[A]

I did. That was fully me. All the opinions are my own.

[B]

Thank you for such a wonderful introduction and thank you so, so much for having me. I'm excited to Be here. It feels like it's super overdue. I've never tipped on down to the kitchen table in the entire time you guys have been doing this.

[A]

Well, you know, you live in obscurity, and I respect it.

[B]

I do.

[C]

I do.

[B]

I'm. I'm in the show, and everybody respects that, and I appreciate it.

[A]

But, yes, you're here today for a very important conversation, actually. And this is where I was like, all right, first of all, we want to give love to Kia. Kia is going to be back soon. Guys, I know you all are like, please, how much longer do we have to endure you? Don't worry. We're just giving her a good space and time and her heart some space to heal in the way that it needs. And we know that's going to be a whole journey. So we want to make sure that we continue to hold her and love her and know that she's missed during these times as well. But everybody needs that time to process how they need to. So I'm grateful for everybody who has joined me. I'm grateful that you came out of obscurity to have this conversation with me.

[B]

I put on some clothes. Okay. You did.

[A]

You put on your. You did your hair. You put on makeup. And she's already a baddie. Let's speak very, very naturally. Okay? Let's be very clear. But she really did put on a little juice for you all. So say thank you collectively. Before we move on to the kitchen table, I just want to quickly shout out the Patreon. Make sure you all tune into the Patreon, where you get the full video version of this podcast, as well as all of our socials, YouTube, YouTube, Instagram, Facebook. I think that we have departed from TikTok because of their nefarious ways. And so I cannot confirm that all the way that we. But I think we have.

[B]

At this point, we can't have. We just.

[A]

No, we can't have anything because these all white men are evil. I also watched that Epstein documentary, the recent one for the victims. God bless everybody. God bless everybody.

[B]

Yeah.

[A]

Speaking of God, blessing, everybody. Thank you to everyone who has donated so far to what I was speaking to you all about with the children who are dealing with the enemies. Ice. So I. I'm trying to talk about this in a way that's safe. You know, we do have to talk about things as a community, but I. I am unsure as to, you know, ramifications that will happen if you say things in a certain way. So, you know, as a community, we have been Caring for some children whose MOT was deported by ICE in order to make sure that they did not go into worse conditions with this already being horrific circumstances. And so we are legally trying to get them to their family, but it is taking costs and, you know, legal fees. And they also just need care while they're here. Clothes and shoes and things like that. So I've been talking about it with the, with the, with the audience, with our community. And so far you all have sent in some donations, and I'm really, really grateful for that. It is definitely going towards helping to care for the children while they're here and also to go towards legal fees and. And things that are needed. We got their passports. That's an update. So now we're just working on other legalities on the other side to get them back. So I just wanted to give you all a little quick update and say thank you. It is my PayPal that is in the description box. I am sending those funds directly on to the direct caretaker. So I just want you all to know that it is not pros, it is not a percentage. It is not like this is going straight to the children. So I just want you all to know that. And I felt like the safest way was just for me to go ahead and send that one directly. So if you see that in the description box, that is how you can continue to donate. $5, $1, $10 if you got it, open your purse, but not that one. Even though today is Valentine's Day and I. And did I open my purse this morning, perhaps?

[B]

Of course you did. Of course you did.

[A]

With that lovely and wholly inappropriate transition. We're gonna go into the kitchen table. You see, this is why I can't be responsible for much. This is why I can't. We'll see you all at the kitchen table in just a minute. Welcome back to the kitchen table. So, you know, it's Black History Month and we're going into Women's History Month, but these are conversations that have to be had all the time. So last week I had Dr. Wendy on the show. Dr. Wendy is an incredible OBGYN out of Chicago. She was our guest at the Chicago Live Show. She's come on multiple times. She's a recurring guest at this point and a family to the kitchen table. And she has spoken to us a lot about perimenopause. Also self advocacy in the medical world because that's why we have black women doctors. I know a good portion of them got into this work because of what we deal With, Right. So it's no secret that black women have a horrible history when it comes to the medical, medical world in general. You know, from experimentation to sterilization and ideologies that we have a higher pain threshold, there's still gross disparity around, you know, our mortality rates when it comes to maternal mortality rates in general. We got the example of Shaja Washington, who passed away here in Brooklyn at Woodhall Hospital from a botched epidural and she went into cardiac arrest. And if you all don't know that story, Shaja spoke up for herself when she knew that the epidural did not feel right. And the doctor still proceeded and, and did a number of things within these, within this process, including there's a test period when you're putting an epidural in to when you actually administer it. For real. For real. And he did not wait that amount of time. He apparently dug it in too far and then he lied about it. And this young lady passed away giving birth and her family, she was ripped from her family. Her child will never know her in the physical sense. So I say all this to say, I know this is really dark, but it's a very necessary conversation. And our good guest here, Nikki, has had a number of medical conditions and advocacy that you've had to do for yourself. And so I thought, you know, you can't be the only one out here who is dealing with so much on a regular basis. And it would be helpful to somebody in the audience who might be going through something similar. So I wanted to start off by first of all having you introduce yourself in the way that you want the audience to know you before we get into all the nitty and the gritty. So I'm going to let you take it away.

[B]

I'm Nikki Nicole. I am a mom, formerly in corporate America, not right now. And I am someone with a really complex medical history who has had to spend an inordinate amount of my time, life and energy advocating for myself to get to a path of diagnosis for different conditions. And so through those processes, I've learned a lot of really hard fought lessons on how to deal with the medical system in general, but also as a complex chronic conditions patient, which we are the kind of patients that no doctors are really happy to see coming. When you add in the fact that I'm a woman, the fact that I'm black, there are layers on layers on layers. And so, you know, I'm excited to be here to talk about some of those experiences and hopeful that what I have to share today will be helpful to anybody who is listening.

[A]

Absolutely. And we're really grateful that you're coming to share this. Right. Because I know it can be deeply personal. But as we also know, if we don't have these conversations more often, then there is no room for any sort of change. And while change does feel so far because of everything that we have witnessed in this world and watched it like ramp up.

[B]

Yeah. They got still snorting cocaine off the toilet seats. In charge of health and human services right now. So, you know, godspeed and good luck to all of us. Yeah. RFK in a hearing this past week, actually said that on the record in like a congressional hearing, that he's not worried about a certain thing because he used to snort cocaine off the toilet seats. That's who's in charge of the health infrastructure this country right now. So God speed and good luck to all of us.

[A]

I knew it was a problem. Let's be clear. I've always known it was a problem, let's be very clear. But I knew it was a problem when this had his family swimming in pure filth.

[B]

Yeah.

[A]

Pure filth and feces.

[B]

Yeah.

[A]

And with no regard, but okay.

[B]

Yeah.

[A]

But we're saying these things out loud at, in like what's supposed to be professional settings.

[B]

Like we're at work.

[A]

Yeah, we're at work.

[B]

Yeah. Our prior cocaine habit off of a toilet seat.

[A]

You know, I'm just gonna pause this right there, one second. I hate these people. These people. Let's get into some of what, Some what? Some of your, your what you actually deal with. I don't know, I don't know how to worded in a way that's appropriate. I don't want to be like, like what's what, what you got? Like, you know what I mean?

[B]

That's the place to start. Right. And the question in response to that is how much time do you have?

[A]

We are, listen, we're here, we're sitting at this table.

[B]

I have a lot of different conditions. And what's really interesting about me is that for almost 20 years, the most serious of my complex conditions was actually misdiagnosed. So right now the condition that I have that causes me the most problems on a day to day basis is lupus, which is an autoimmune condition. It's consider connective tissue disease. And so what that means is that my immune system attacks connective tissue throughout my body. And when you think about connective tissue, you think like tendons, ligaments. Right. And I do have joint problems like my joints are very unstable, right? But it's bigger than that. There's connective tissue in every single organ in your body. And so what that means for me and many people like me, is that my organs are constantly under attack by my own immune system. And over time, those attacks can lead to actual permanent organ damage. In practice, that looks like widespread pain throughout my body. So my joints, my muscles, my intestines, my chest will hurt a lot because the lining around the heart or the lining behind my lungs is inflamed. And so it will hurt, literally hurts when breathed right? I will sometimes break out in the blood, vessels in my skin will rupture, and I'm covered in bruises or I'm covered in petechiae all over my body. I have a form of lupus that actually attacks the white matter in your brain. So I have some brain lesions, and right now it's attacking my tear glands and my eyes. So it never ceases to amaze me what it can do. The big things that you have to be worried about with lupus are that organ damage that I referred to, right? Heart, lungs, lupus loves to attack the kidneys. And so a lot of people with lupus actually end up with kidney disease, and many people with lupus end up needing dialysis or kidney transplants. We are much more likely to die of cardiac related events, thrombotic events, so strokes and ruptured blood vessels, pulmonary embolisms, things like that. Because basically our bodies are just in a state of constant chronic inflammation. Everything is aggravated, everything hurts, there's always something wrong. And so for nearly 20 years, though, originally my doctors thought that I had a very rare presentation of relapsing and remitting multiple sclerosis, because the brain lesions in this form of lupus and Ms. Look identical on imaging.

[A]

As long as I've known you, I thought you had Ms.

[B]

So just over the last couple years, we've been able to tease out what's actually going on with me. And I think they have it right this time. I think, okay, okay.

[A]

Who knows?

[B]

Who knows? And so for years they thought that I had a really rare presentation of relapsing and remitting Ms. Where I had an initial flare, which is a period of increased disease activity that took me from what my baseline was before to a deteriorated state and then just stayed there and stayed stable and didn't get any worse. And again, that's an unusual presentation. So I was being treated for that along with a bunch of different other conditions. So I also have POTS which is orthostatic, hyper or hypotension. So my blood pressure gets too low when I stand up, sit down. I had endometriosis, adenomyosis, fibroids. So I've had a hysterectomy to deal with all of that. Joint instability has led to, you know, multiple surgeries on joints. My back is like hurricane wreckage. I often have rashes and things that are just. I. I'm good for showing up to the doctor or the hospital. And they need to go into the medical textbooks because they're like, I've never seen this before. I've never seen a case of this. And so it was 20 years of all of these different diagnoses coming, like, oh, you have this, you have this, you have this. No, you have this, you have this, you have this. And I was saying to everyone from day one, guys, I think there's a single source of problems here. There's one thing going on in my body that is responsible for all of this, and it would be great if we could figure out what that is. I don't think I have truly, you know, 25 different individual autoimmune conditions. Like, there's one thing, finding doctors who are willing to put all of the pieces together, though, is very difficult. And so for years, I would be treated for individual things as they would happen, feel a little bit better, not great. And then something else, another symptom, another new strange phenomenon would happen. And then I go see a new specialist, and we treat that thing as a one off. Well, ultimately, we got to a point where that approach simply did not work. And I was getting progressively more and more sick. And I think that getting Covid 1.0 I got. For. For those of you who don't know, I got Covid in March of 2020. So I got the original Batman.

[A]

Yeah, the OG please.

[B]

And I was extremely sick from Long Covid before we even knew what Long Covid was for a year. And I don't think that that helped things. I actually think that worsened kind of the inflammatory cascade and sent me down a path of just worsening symptoms. And so I ultimately made the decision to make an appointment with a specialist at the Cleveland Clinic. After gathering all of my medical records from the last 20 years from every doctor I've ever seen. I gathered all of my medical records on my laptop. And I know some of you girlies would use ChatGPT for this. I'm gonna tell you I would not, because your health records are not private once you put them in there. But What I did is I put these records on my laptop. I looked at every blood test, I looked at every surgical report. I looked at every single clinician's note. I looked at every hospital admission. I looked at all of my labs to spot patterns. I looked at the time in which certain symptoms would pop up versus others, the age I was at which certain things happened to me, and some patterns did jump out. Using that data, I came up with a handful of diagnosis that I thought were likely. And I found a specialist at the Cleveland Clinic who deals in some of those. She's a rheumatologist. And one of the things that I thought was that I had a vasculitis of some kind.

[A]

Okay?

[B]

Made an appointment, got on the road, went to the Cleveland Clinic, met with this lovely woman who took this, you know, these files and this. I actually took a deck, I took a PowerPoint deck into this disappointment with her.

[A]

Can I pause you right there? I just want to pause you right there really quick before you keep. Because this is very important information. Let me tell you all about this lady here real quick. This is one of the most detailed, thorough I've ever met in my life, okay? In the best of ways. And in, I mean, a possibility model, truly, in every form and facet of life when it comes to how you handle things, from the way that you run your household to your professional self as well. And I think it is, this here.

[C]

Is.

[A]

This is, this is. This is university level work. Like, you're doing what the doctors should have been doing, especially because you'd been. Because you just went for context just to let the people know, because you have been dealing with these issues for, like you said, at least 20 years. Right? You just went to the Cleveland Clinic visit. What was that last year?

[B]

No, that was 2023.

[A]

2023. So three years ago in a 20 plus year journey is when you're like, all right, I need to stop. I need to literally break this all down in this way. Please continue with your story. I have more questions for you, but please continue. I just wanted to give them context.

[B]

So. And the thing. Let me be very clear. I have a team here locally of wonderful doctors, right, who were all trying their best to help me feel better within their purview, right? So a rheumatologist is like, joints, I can treat that. Right? A cardiologist is like, chest pain. We can make sure that you're not dying of a heart attack anytime soon. A pulmonologist is like, we can try to get your lungs better. My Primary care physician is like, I can treat you for migraines or a neurologist can treat me for migraines, right? And I have an incredible OB GYN who helped me with all of the issues that I had with my reproductive system. But I want to say that one, there's not enough time in the day for any one of these doctors to sit and go through these records in the way that I had to in order to get somewhere, right? They are over text, they have too many patients. And so I want to be sensitive to that, right? I have encountered some shitty doctors. I don't know any of the specific doctors that I have now for it taking this long to figure out what was wrong with me. I've always had a team of great doctors, but that's not by happenstance. I have built a team of doctors brick by brick. So I've had to interview, like treat. And everybody does not have the ability to do this. Everybody's insurance is not going to allow for this. And I understand that. But to the extent that you can treat finding your care team, if you are someone like me, as interviewing people the way that you would for any other job that you are hiring for. So I'll give you an example. I've talked about the things with my reproductive system and because of that, before I even became a mother, I had to have a robotic myomectomy to have fibroids removed to preserve my fertility. I went to the doctor in my city who was the best at the minimally invasive robotic surgery that I desired to have. He did great with the surgery. Did not like his bedside manner. He was a fucking asshole. And so I knew that ass. I knew immediately after that surgery that I would not continue to see that man for future gynecologic and obstetric care. I also knew that when you have a myomectomy, the thinking, especially at that time, you know, 12 years ago, was you cannot ever have a vaginal delivery after that because of the fear of uterine rupture.

[A]

Okay?

[B]

I really like hearing that because I am so sick all of the time. So imagine healing from major abdominal surgery on top of already always feeling like death on top of not getting any sleep, having a newborn. I just felt like I wanted to avoid a major abdominal surgery if it was safe for me and my child to do so. Got into medical journals. I looked at the studies that outlined what the actual risk was. I got a hold of my surgical reports that had pictures of how my incisions were closed and what the size of the masses were that were removed. I did the research. I looked into the studies that showed that the risk for your average patient who's had a single robotic myomectomy is actually very low. And so I set about interviewing different obgyns to see if there were any who would be willing to allow me to have a trial of labor. Because really, what it ultimately boiled down to is a fear on the part of doctors of not wanting to be sued if I did have a uterine rupture. And, hey, listen, I feel that, like, you don't want to risk your license. You don't spend $500,000 or however much it costs you to go to medical school.

[A]

Absolutely.

[B]

This is the most litigious field in medicine, I think. But I wanted somebody to hear me and actually look at the evidence with me. So I went to three different obs, and the first two were absolutely, no, won't do it. The third that I talked to was like, well, if you have your records, I'll take a look at your record if you were closed up the right way. I have no problem with a child of labor. And so she became my ob. And that is like, we are. That's my good Judy now. Okay.

[A]

Locked in.

[B]

But I went in with research papers and pictures from my surgery and my medical records. And that's how I approach finding any doctor, any. Any primary care physician, obviously, anybody that I have to see. Neurologist, cardiologists, I'll go. If a doctor that I trust refers me, I'll start with the person that they refer me with. But if anything in that situation is not to my liking. Yes. So I'm gonna find another one. Thank you so much for your time. I've done this in the past couple weeks. You know, you and I have discussed this, right? I mentioned earlier that one of the things that appears to be happening with me right now is that my disease is attacking my tear glands. I sure you guys know this, but your tear glands can just fall the fuck out of your skull into.

[A]

Let me tell you something. You.

[C]

You.

[A]

Every day, somebody teaches me something new about the body. You taught me. You were like, your tear glands can fall. I said, what? My whole other homegirl a couple years ago was like, do you know that your cervix can drop, like, out of. Almost. Almost out of your vagina? I said, what?

[B]

Yeah, yeah, yeah, yeah, Continue. So I find, you know, doctors that are. Are a good f me bedside manner. They have a natural curiosity. They're willing to listen because clearly, I can talk Talk, talk, talk, talk about what's going on with me. Right. But I'm so grateful in the situation with the ob. Right. Like, we were able to work together. And I had a successful vaginal delivery. Shout out to the boy, my son.

[A]

Yes.

[B]

But, you know, recently I was referred to an oculoplastic specialist when my ophthalmologist could not figure out what this. This swelling, this mass was in the orbit of my right eye, and it presented like a cancer initially. Right. And so I had this urgent referral to oculoplastic specialist who I'm like, listen, this is what's going on. It's impacting my vision. I'm having headaches and nerve pain in the area. I'm extremely concerned about this. And he took one look at me, it was just like, this is your tear gland has prolapsed. I see this every day. Okay. I hope that's what it is. But what do we need to do to confirm that? I'm not the kind of person that you can watch away things with me. And he was not feeling a sense of urgency behind, like, let's get a ct, let's get some imaging to make sure. Because some of the medications that I take and my conditions also put me at a higher risk for cancer. So you. When a lump or a bump pops up on me, you need to do your due diligence. You need to be proactive, not cancer, before you decide on whatever this benign process is. He wasn't moving with any urgency. He wasn't interested in investigating further. And I said, oh, okay. Thank you so much for your time. And the next week, I had an appointment with an eye clinic that has an act right about them. And I've had a CT and I'm going to have an mri. And, you know, we've gotten down a path of eliminating some things, but we still don't know for sure exactly what's causing the problems with my vision. But my point to this is you have to advocate for yourself because no one else will. These people, intentionally or not, these people will let you die. They will let you die. They will let you suffer. They will let you languish. And you are the only person who will ever care about you the way that you do. And so you have to. And listen, I respect doctors immensely. I respect the discipline and the focus that it takes to get a medical degree. And I do not claim that my knowledge is equivalent to them about the conditions they treat. But where my knowledge is equivalent to them is my own.

[A]

Is your own body that I have.

[B]

Is your own body for my entire life. And I'm very mindful and cognizant of when anything changes. And I do not hesitate to take my concerns to a doctor and raise those concerns and keep talking until someone takes me seriously. Which is how I ended up at the Cleveland Clinic a few years ago with a woman who specializes in vasculitis. And bless her heart, she looked at all of the documentation that I sent her. She sat with it for two weeks.

[A]

And you're answering. What's so crazy is you've answered like five of my questions in all of this, right? Because. No, this is great, actually. Like, oh, damn, I don't even have to. I don't have to ask that either. I don't have to ask that either. I. But I love, I want to go back to what you were just talking about as it pertains to your body. Right.

[C]

I am in my season where I have fully accepted that acts of travel is my new love language. And what I love about travel, particularly solo travel, is I really love how empowered I feel, sort of negotiating new places, new cities by myself and being able to speak the language. Language of wherever I'm traveling is something that I love and really makes me feel like I can do anything, especially on my solo travel adventures. And Babel has been an amazing tool that has helped me to negotiate new language and and develop new language in all the cool places that I'm traveling. So if you're ever feeling overwhelmed or have felt over overwhelmed by the idea of learning a new language, you are not alone. Okay. Talking is hard. Studies show that 70 to 90% of people trying to learn a new language give up. Fortunately, Babel's built so that it's really easy to get started. They understand that people learn differently. So you can dive into a podcast. When you don't quite feel like a quick lesson, you can speak out loud to get that practice in. You can explore courses based on specific topics or even create your own customized review list, all within the app. Learning a new language with Babel is all about small steps, big wins and progress. You can actually track and feel. Their bite sized lessons fit easily into your daily routine and are also easy to remember. Just 10 minutes a day is enough to start seeing real results. Babbel lets you practice real life conversation step by step, without the stress or pressure. You'll build the confidence to speak up when it matters, from ordering a coffee to chatting with new friends abroad. And Babbel is more than just lessons. They even offer a large collection of podcasts where Babel experts reveal language secrets and offer an inside look at local cultures, which is what I love. So I have used this in my solo travels and it has really helped me develop conversation skills when I'm traveling abroad and to do so confidently. Like once upon a time, I'm holding up the Translate app and you know, stumbling through conversation and I've been very, very proud of the progress that I've seen in myself as I'm negotiating spaces with people and really learning and broadening my understanding of different culture. So 10 out of 10 I fully recommend make fast lasting progress with Babbel, the science backed language learning app that actually work works. Here's a special limited time deal for our listeners right now. Get up to 55 off your Bible subscription at Bible.com forward/grown. That's B-A-B-B-E-L.com forward/grown. Get up to 55 off at Babel.com forward slashgrown. Make sure you go to the website B-A-B-B dash E-L.com forward slashgrown. Rules and restrictions may apply. Bon voyage.

[B]

Hi, I'm Kaelyn Coleman, winner of Target's HBCU Design Challenge. This challenge moved me closer to my dream of becoming a fashion designer. Through mentorship and support. You can find my design along with creations from other black founders in Target's Black History Month collection. Well, the holidays have come and gone once again.

[A]

But if you've forgotten to get that special someone in your life a gift.

[B]

Well, Mint Mobile is extending their holiday offer of half off unlimited wireless. So here's the idea. You get it now, you call it an early present for next year. What do you have to lose? Give it a [e-mail] Switch limited time. 50% off regular price for new customers. Upfront payment required $45 for 3 months, $90 for 6 month or $180 for 12 month plan taxes and fees. Extra speeds may slow after 50 gigabytes per month when network is busy. See terms.

[A]

You clearly had to start paying very close attention and form a very particular type of relationship with yourself. So how is navigating all these multiple concerns, how is that influenced your relationship with your body? How what is your relationship like with your body?

[B]

That's a great question. It is a really hard existence when your ultimate biggest app is your own body. And I'm a black woman in America who was an executive in corporate America. So baby, I got some options.

[A]

The call's coming from inside the shell.

[B]

Is coming from inside the fucking house. Okay, that's crazy.

[A]

That's crazy.

[B]

So my relationship with my body is very complicated because life continues to happen around me. Things, the economy, the job, the marriage or relationship, parenthood, all of those things continue to happen around me, and they continue to have ups and downs. And sometimes you need an escape from the stresses of your life. For me, there is no escape. And for people like me, there is no escape from what is most of the time the biggest stressor in my life, which is my own body. And that is a maddening, frustrating, upsetting, agonizing thing to deal with sometimes, right? Sometimes you want to get in the car and you want to drive away from it all and say this shit, but the bitch is coming with you.

[A]

I know you're like, that's. You're like, damn, I can't escape you.

[B]

But the thing, though, that I also have to say about my body is that I respect. Respect it immensely. Because I have dealt with things for years that have the potential to kill people. I have dealt with things that are, like, so painful and so overwhelming physically. And I still. She still. We get up every day. We get up every day and we can laugh and we can smile, and we don't look like what we've been through. And so I have. It's a love hate relationship, right? Like, there's an immense love and respect for, like, yeah, girl, you got me through. What is this? Surgery number 10 of my adult life. And we out here, right? You've gotten me through, like, my brain. Despite, you know, brain fog and cognition and memory issues and things. Like, I'm still very. She's still up here. I'm still very smart. I'm still very sharp. I'm still very funny, even if only to my self. I be cracking myself up.

[A]

No, no dead ass. No dead ass. And she got the loudest laugh.

[B]

Okay?

[A]

And look at me. I have no room to talk.

[B]

I laugh and I tell all of my. I've told you this before. Like, y' all be like, I worried about you. And I'd be like, yeah, you should. But really, when you should is when I can't laugh at any of this anymore. And I have not reached that point yet. And so there's this immense, like, love, hate, gratitude, respect, but also deep frustration and just, why can't I be fucking normal for once? Like, that is. I literally, you know, I say that at least twice a month out loud. Like, this shit again. I just want to be normal. So my relationship with my body Is definitely complicated. I think that I try to have as much of a sense of gratitude as possible about, like, with the understanding of the conditions that I have, like, how bad things can go and that it hasn't gone that badly yet. Like, I don't, as of right now, knock on wood, I don't have any kidney damage. My heart and lungs are fine. Like, I've been given an all clear for right now from a cardiologist, a pulmonologist, like, so, you know, it can always be worse. And I know people hate hearing that. I hate hearing that sometimes, right? But I'm a living example of the fact that that is true for me.

[A]

It could literally be worse.

[B]

It could be worse. And the fact that it's not causes me to stop and thank my body from time to time. I still would love, like, I still would love to figure out a way to square up with myself, like, to.

[A]

Just no fair, very Spider man.

[B]

Eat my own ass very much. But until, you know, somebody innovates in a way to make that possible, I just have to sit in these conflicted feelings of, like, okay, it is what it is.

[A]

I think that's very real and that's very honest. And I'm sure that is extremely relatable because people feel that externally, right? So you can only imagine the challenge of having all of those, those nuanced feelings literally about not even yourself, like your spirit, but your physical. I want to go back a little bit to some of the things that you are living with and that you had, have. Have had to advocate for, because you did speak about them showing up in one way, but actually being another, you having to keep track of those things that had me thinking about. You spoke about your bruises, you spoke about your rashes, you know, some of the external things that people can actually see. But I can imagine in 20 plus years of dealing with these medical conditions that maybe there was a time where because some of those symptoms were so internal that they weren't taken as seriously or listened to. As a black woman who comes from a very problematic foundation, I also know how we can be dismissive ourselves, which is probably due to how we've been treated, right? It's like, girl, you just a hypochondriac. So talk to me about what it looked like, especially in the earlier days, because I can imagine with age and experience and you dealing with this, this is how you've gotten so savvy and how to move. But Earl, tell me how that, what that looked like for you with things not always being so overt and obvious.

[B]

So I've always, for my entire life, right, I've always gotten sick more easily than other people. I have always had, like, from the time I was a child, weird rashes and things where you go to the dermatologist and they're like, let me go get a textbook. And they'll go get a textbook and say, I've never actually seen this before. It's this. And it's you. You treat it with this, this cream. It's like from a virus or it's from a bacteria or it's from, you know, something. So I've always been prone to getting sick really easily. I've always needed to sleep way more than people. So like, you know, when I was a teen and you know, as a teenager, you start to sleep in, you start to sleep a little bit more longer. Like it was normal for me to sleep 12 to 15 hours if. If my mom would leave me alone and let me. And so I've always been more tired than other people. And so those things were constant with me, right? Always had, you know, these really heavy periods that were really painful and just. Was just always kind of just a little sickly is how you would describe it.

[A]

A little sickly is so black. It's so black.

[B]

A little sickly. You know, she ain't. So when I got into my early to mid-20s, I started to notice that the fatigue was different instead of just, I'm a sleepy girl, I always need a nap. It got to a point where it was like the way that I describe the fatigue that I deal with that is typically relatable to most people is when you were a kid and you would go to the pool in the summer and swim all day in like 80, 90 degree heat, what did you feel like at the end of the day when you got home after you took that shower, you hit that bed.

[A]

That, that's it, Bed to the bed.

[B]

That's what I wake up like in the morning. And it doesn't matter how many hours I sleep, it doesn't matter. That is my baseline. That level of exhaustion started in my mid-20s. And so it was very. Because I've always been very serious about my sleep hygiene and getting enough sleep. And so it was very weird to go from just, I'm generally tired to oh, my nigga, I am exhausted.

[A]

Just like, I can't go on any further.

[B]

One foot in front of the other. Feels like I'm walking through quicksand just to try to get up and like get out the bed. And it didn't matter how much I slept. So that was the first thing. And then it became like I put on a whole bunch of weight out of nowhere for no reason. And anybody who knows me knows that I've always been, despite these chipmunk cheeks, I've always been naturally thin without. I can eat what I want. I can. And over like a six month period, I put on like £40 out of nowhere, right around the time that this really intense fatigue hit me and I stopped being able to do things that I had been doing prior. So this was during the first period of my life where I ever was consistent about going to the gym because I never had to. I was like, oh, I'm slim and trim no matter what, right? But I had.

[A]

Do y' all hear these annoying flexes?

[B]

I gotta take em where I can get em, girl. You know, I'm falling apart on me.

[A]

No, you're right, you're right, you're right.

[B]

So I had actually, in that timeframe, decided to care about health. Right. Which is so funny. And so I was at a gym, I had joined a gym. I was taking like step aerobics classes. Like I was Kia.

[A]

Okay, A possibility model, if you will.

[B]

I was hit with mine, you know what I'm saying? I was. And it started being so hard for me to keep up in the classes. And I was like, what the hell is going on? Like, this is crazy. So I lived with that for a while. And then, you know, I saw primary care physician mention a couple things and, you know, initially they hit me with what? They hit all women. Well, maybe you're just depressed. Maybe you just have anxiety. Maybe you're just this. And I'm like, only thing I'm depressed about is the fact that I don't feel well.

[A]

Yeah. And I'm tired.

[B]

Good. My, like, this is what I'm depressed about. It took a little bit of going back and forth on that. And what happened was I continued to start to sleep progressively more. And so I was sleeping 20 hours a day on days where I didn't have to get up and go to work. And when I was awake to get up and go to work, I was just miserable. I couldn't think, I couldn't concentrate. I was having really bad memory loss. I was doing shit like walking out the house, leaving my door wide open to go to work. It got to the point where I had to put post its to say, girl, remember to close the fucking door before somebody comes and steals all your shit. It was bad. And I've always been someone who has always had a very sharp mind. I've always had very good recall. And so it was terrifying. But no one was taking those things seriously. But finally I realized I'm sleeping 20 hours a day. And, you know, I'm in a relationship. I have a spouse. I have, like. And we're, you know, like. And I can't do anything. I can barely, you know, be a wife. And I'm like, this is a really inopportune time for me to be this way. Right.

[A]

Yeah.

[B]

And because it was mostly internal stuff that wasn't apparent to anyone. Like, even my own family kind of was like, it's not really wrong with you. And that's against the backdrop of having a family in which autoimmune conditions run rampant. And I have an aunt who exactly like me. Like, she ran this same course. She got really ill at almost the exact same age, 10 years ahead of me. And even with that, it was still, like, an uphill battle to even convince people close to me that, like, no, something's really, really wrong. And part of that is because I have a terrible habit of pushing through anything, showing up in ways where it's hard for you to tell that something is wrong. Because it's important to me to do good work and be a good friend and be a good spouse and all of these other things. Right. And so I will show up, up to things, looking like nothing is wrong. And on the inside, I am practically shaking because I'm in so much pain where I'm so tired. But finally, after a few months of, like, I'm sleeping 20 hours, I went to my primary care physician at the time, and I broke down. I was bawling in his office. And I said, I've tried everything you've asked me to do. I've taken vitamin D supplements. I've taken vitamin B12. And he had sent me to his credit, he was working with me. So he had sent me to an endocrinologist. Like, maybe a thyroid is the problem. Maybe it's this. Maybe you maybe have sleep apnea. So I had had a couple sleep studies, and everything was coming back normal. And I went and I broke down in his office and I said, I recognize that everything has come back normal. And I've done everything that you've asked me to do, but, like, I don't have a life right now. This is not living. I need help. I need you to. I need someone to help me with this. And so the first thing that happened that truly changed my life for the better was he said, I don't know what this is. I'm not exactly sure how to treat it, but I do have some ideas about what we can do. Just for the fatigue component, he put me on a stimulant. He put me on a stimulant, Modafinil Provigil that some people take for like sleep disorders like the narcolepsy sometimes people take. There's some applications maybe in like adhd, maybe, I'm not sure.

[A]

Okay.

[B]

But he put me on that and that brought me back up to a baseline level of like, okay, I'm exhausted, I'm in pain, but I can have a life again, right?

[A]

Yeah.

[B]

That stabilized me for a little bit. And then the memory problems and the cognition and things got worse. And this is when it gets really tricky with like people around you. You look fine, you act fine, but yet you can't remember to do this very simple thing or you're too tired to do this thing that's mandatory or necessary for you. And so it was very hard to get everyone around me to understand, like, no, something's really wrong. So, you know, I was stable for a period with the stimulant, but then things just continued to get worse. Like I would get really weird rashes. I would start to have just widespread pain everywhere, constant headaches, and every time something would happen, I would be sent to a new specialist. So when I started having headaches all the time, I got a neurologist. When my chest started hurting all the time, I got a cardiologist. When I started having shortness of breath, I got a pulmonologist. When I had a six month long period of chronic sinus inflammation that be could caused vertigo. So I was just dizzy and wanting to throw up 247 for six months, I got an EMT and they had to go in and like completely Roto rooter everything. In my nose, I had a chronic dry eye that was so bad that I had to. My corneas were constantly scratched, which is really painful. So I had to get silicone plugs put in the drain, the tear drain system in my eyes, which is, is really fun.

[A]

What are you made up of? I'm just so curious.

[B]

Hold your eye open while somebody is putting like this tiny little silicone plug in this little tiny hole at the inner corner of your eye. I've had so many painful medical procedures. I've had spinal taps, I've had muscle and nerve conduction fiber tests, which is where they stick a probe into the muscles of your leg. And like, basically shock you to try to watch how your nerves conduct that shock through your body. I had a colonoscopy way before, like, hitting the age where it's required. I've had multiple biopsies, like skin biopsies. I've had a breast biopsy. I've had, you know, multiple abdominal surgeries, and I've had joint surgeries. And so it became very apparent to people over time, like, something wrong with her. And also, I stopped showing up. I stopped showing up. I stopped. I've always been a homebody, but you could always count on me to, like, when it's time to come out. To come out.

[A]

No, you'll come out. Yeah, you will.

[B]

I stopped showing up. I stopped. Like, people see me now locally, you got a good four times a year to see me. And I'm talking about 30 plus year friends. You got a good four times a year to see me because I have to conserve my energy. And I think it was around when I stopped showing up that people started to understand, like, oh, every time I call her, she's actually in the bed. Or she had to go to the hospital again, which. Hospitals are really funny thing for people who are really chronically ill because we sit around and we will be in pain that somebody else would probably think they're dying. And we're like, yeah, go to the hospital this time, because they're just going to waste my time and send me home.

[A]

Which is what a. What a mind fuck for a decision that you have to make for yourself.

[B]

Especially when you have pain. Like, really, I get really bad chest pain. Really, really bad chest pain. When either the sac around my heart is inflamed or the lining behind my lungs is inflamed. And you will feel like you are having a heart attack.

[A]

Truly, this is what I'm saying. I'm like, how do you know the difference?

[B]

You don't. You don't. And I had to pin my cardiologist down and I said, listen, is there anything that you can tell me to help make the decision about when I should come into the hospital versus when I should not? Because, you know, I've come to the hospital for chest pain multiple times. For them to just be like, it must just be your pleuritis acting up again, and I waste time and energy. And, you know, and typically I've only gone because my mother has just been absolutely beside herself that, like, if you have to go, you have to go. And I'm like, all right, I'm gonna. This lady can get a good Night sleep. I know they not about to do nothing with me. And so my cardiologist said that for me and it's not medical advice for anybody else. But what she said to me was, when it is just general inflammation around the heart, the treatment for that typically is high dose ibuprofen. And so I take ibuprofen at home for 24 hours around the clock and I don't feel any better. She said to call them and they'll have me come to their office for an EKG rather than just go to like.

[A]

Because it used to be aspirin. Right.

[B]

So aspirin is for, for like heart attack prevention.

[A]

Right.

[B]

Ibuprofen is for like inflammation, inflammation, inflammation around the area. So, you know, I get little, you know, tricks and tips there. But a lot of the time it really is just like it, we'll do it live. We'll just, you know, I'll, I'll have like intense abdominal pain for weeks and finally go to the ER and they'll think, oh, you have a kidney stone or you, your appendix is ruptured. And it's just that none of that is true. Lupus is attacking my intestines and causing like, it'll attack the blood vessels and restrict blood flow. And so the intestines are like, girls, ouch. And it hurts.

[A]

For your blood to be going to be flowing and it hurts for your blood to flow.

[B]

It literally hurts. We're not getting enough blood and it's not to the point where like, it's going to kill me. But it's very painful, but it's uncomfortable. So I'm on a lot of medicines over, over, you know, over time we've kind of figured out, like I said, I went to see that doctor at the Cleveland Clinic, that wonderful woman, took two weeks with all of the records that I shared with her and said, you know, I don't think there's a single thing that explains every single problem you've ever had, but the one thing of that explains the majority of this is lupus. And I, you have systemic lupus and your local rheumatologist, I was already seeing a rheumatologist for joint problems. She said she could treat this. And so, you know, my rheumatologist to that point was kind of like, I don't know what you, you have, I don't know what to do with you, but I do know that I can try to make your joints and muscles feel better with these medications. And so she had me on a couple of medications that they helped, but not a ton.

[A]

Okay.

[B]

And so I came back from that appointment armed with this diagnosis from this preeminent expert rheumatologist in her field. And that was enough to get everybody on the good note. And within months, I was approved for Benlysta, which is an immunosuppressant infusion. So I take 20 pills a day. So there are pills that I take multiple pills multiple times a day, and they're all on my nightstand. So as soon as I wake up, when my alarm goes off, I take my morning pills, which is. I take an immunosuppressant pill. It's a pill they give to people who have had organ transplants. I take my stimulant. I take hydroxychloroquine, which I don't think they truly know how hydroxychloroquine works. It's just the standard of care for lupus and a couple other autoimmune conditions. I. Depending on where I'm at with pain, I may have to take medications that act on my nerve fibers just to shut them up so that I can function without feeling constant pain. And then I go once a month, and I have an infusion. So I go sit in an infusion chair for two hours every month, and I get a steroid and I get enlisted. And this combination of medications has really been life changing for me. Not to say that I don't still have pain and issues and exhaustion and fatigue. It is still possible to flare while you are on medication. But it changed my life dramatically within a month of me starting enlisted. And I shared that with everybody who knows me. Like, this is crazy. I can do things that I never would have been able to do. Like, I can shovel snow now. Who would have thought I could shovel some snow?

[A]

Not me.

[B]

And I definitely still have hard days. I have hard times. I have things pop up that are, you know, crazy. Like right now, the things that I'm dealing with with my eyes, which is nuts. And then you add. You know, I'm a woman of a certain age. I'm 43. You add perimenopause on top of this.

[A]

So that was gonna be my next. That was. That was my next. Because I feel like I. I either saw something recently, somebody said something along the lines, who I don't even think deals with as many chronic issues as you deal with, but they basically were like, bitch, I. I floated through menopause because I had so much other shit going on that I didn't even. So I'm curious to know how does, how does perimenopause come into play with you? Already dealing with so many chronic issues.

[B]

There is no floating conditions. Conditions there. There is no floating over here. Like shout out to the person having that experience. I love that for them, but it has not been my experience. And so I realized that I. Well, I didn't realize it. I mentioned it to my ob. I started having difficulty sleeping. And for obvious reasons, like, sleep is so critical for me. I dead ass. Like, I have to sleep at least eight hours a night every night. If I don't like, it's trouble for me the next day. And so I started waking up every night at 3 or 4 o' clock am unable to go back to sleep. And that's very dangerous for somebody like me. And so I'm like, you know, this is consistent. This is not just like a little bit of occasional insomnia. What the fuck is going on? Like, I'm like, this is crazy. I got to do something about this. And it's making me miserable. And then I started to just be a little bit emotionally unstable.

[A]

Relatable, content, very.

[B]

Like, people who know me know, like, I'm real even tempered. Now. My temperament is not necessarily a sweet temperament, but it's a calm.

[A]

No, but you're even killed. Yeah, you're even one.

[B]

And it's very consistent. It is hard to piss me off. It's hard to make me have strong feelings about much of anything. And so I was over here losing my shit, just hollering all the time. My poor kid is like, who are you? What did you do with my mother? And so I was like, this is not good. I can't be over here carrying on like this. Especially because he's a preteen. And so he's in an age where there has to be a calm, loving demeanor to help get through some of the things that come with that age. And so I had my annual exam with my OB and mentioned some of these things. She was like, yeah, you, you at that age. And you probably are, because people who've had a hysterectomy and had at least one of their ovaries removed tend to go into it a little bit earlier. So let's do some labs and let's, you know, let's see. So she did some labs and my labs were crazy. Like, you know, we have to be careful with people like you because the interplay of the hormones and the medications. But let's start very conservatively. I want to put you on some combination HRT in the Lowest doses possible. And I want you at your next appointment to talk with your rheumatologist and make sure that they're okay with this. But. So she did put me on a progesterone pill and an estrogen patch. And then when I tell you, game changes again. Once again and again, it speaks to the quality of care I have built up with the care team that I have. All I had to say one time to my good sis, Dr. Angela Rouse, is, hey, feeling a little bit off. And I see so many stories of women who are like, I had to fight. I had to fight to get anybody to test my hormones, and they still won't give me hrt and they still say I'm too young to be in perimental menopause. But I had a doctor that I had auditioned, you know, a decade plus ago. We've been in the trenches. He immediately was like, yeah, say less. We need to do something about this, particularly for you. I know it's very critical that you need to sleep. I also know we need to be careful because of these other things. And so I built up a team of people who operate in that mode now. Now I have to fill in gaps for them, right? Like, I have to make sure every time I have blood work taken, I look at it myself. I have to make sure that every time I have imaging, I look at it myself. I'm not a radiologist, right, But I've gotten good at reading imaging.

[A]

Absolutely.

[B]

My life. And just as a recent example, I had a CT of my orbits in my head last week, and I read the report from the radiologist, and the radiologist is like the lacrimal glands, which are the tear glands that we're Right now. They're like. Like they're in the right place. They're symmetrical, they're not enlarged. And I'm looking at these images, like, nigga. Where like, I can see one of them is lower than the other and it's bigger than the other one.

[A]

Like, like, how am I seeing this and you not seeing this?

[B]

And so I go to the follow up with the actual specialist, and she's like, yes, well, let's look at your images together. As you can see, this gland has dropped down way too far. It's way bigger than the other one. So, like, I have to check behind people. I have to spend a lot of time, like, when it's time to make a referral. Referral. Get lost in the sauce. They all cracked a lot. And so I have to make as many calls as necessary. To make sure that that referral actually gets scheduled. And I recognize that not everyone has the mental capacity. Not everyone has that. The kind of insurance that I've had access to. Not everyone has the money to pay the co pays for some of the things that I've had to do and had to be on. And I understand that. And I am. For a patient like me, I've had best case scenario as far as, like, finances and insurance and the mental wherewithal. Right. To be able to re. Everybody's not capable. And in a perfect world, you wouldn't have to be. Everybody's not capable of reading, like, an actual scientific study from publishing a journal or information on the National Institutes of Health site. So I recognize that there are ways in which I'm privileged, but I also recognize that there are ways in which I just have to do. And I have to be this way because if I don't and if I'm not, I am going to have zero quality of life or I might not be here. I have. I mean, don't get me wrong, it's very ghetto. And sometimes I really do feel like I've seen enough.

[A]

But.

[B]

And that's not just because of my body. Like, look. Yeah, around, right? Like, sometimes I'm like, yeah, see, we wrap this up, right?

[A]

But, oh, this world is just like my body right now. That's so nuts.

[B]

It's real ghetto. But I have. I have a family. I have a son. I have a lot of things that I still want to see and do in this life. And so, you know, there's no choice for me and for people like me to just continue to push forward. And so that's what we do. We get up every day and we push. Adobe Acrobat Studio, your team's home base.

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[A]

So you have said so many like really useful things, right. I think that people can take away. I wanna, I want to kind of bullet point a few of them them because I think these have been wonderful strategies. So if you could bullet point the things that you just said, what strategies would you, would you give to somebody to help them to effectively advocate for themselves? And you broke down how you had to document and so what, like in some concise bullet points, how would you, what strategies would you give to somebody to, to do that?

[B]

I think the most important thing is to resolve yourself, to actually fight. It's really easy to just want to give up and say that's what they say it is. This is the best I'm ever gonna feel. At least I'm alive. But you have to be willing to push, you have to be willing to fight, you have to be willing to agitate people, you have to be willing to question authority. Like you have to resolve yourself. This is my body, this is my life. No one is going to care or fight as much for it as I will. That's number one. Number two, you have to build a care team. And even if your care team is just your primary care physician, to the extent that it's within your control with your insurance, with your finances, whatever it is, you have to keep searching until you find someone who listens to you, who listens to you, who is willing to take your concerns seriously and who is willing to do follow up to investigate those concerns. Every doctor is not like that. Every doctor does not have a natural sense of curiosity. Which is the big thing that I think that patients like us need is we need doctors that have an innate sense of curiosity who like solving puzzles. Yeah, everybody's not like that. Right?

[A]

Yeah.

[B]

And so as much as possible, being able to find a doctor or doctors who are like that and who have a bedside manner that works with your personality, the other things that I would Say is. And I hate that I have to say this, but as a black woman, I've gotten out of this quite a bit in recent years because I have established relationships with my care team. So I will go to an appointment in pajamas and a head scarf and not give one because they know me. When your doctors don't know, you show up like you are loved and cared for and show up like you have pride in yourself. And I hate to say that, but they do not treat us the same as other people and they make really harmful assumptions about us when we show up in certain ways, especially to a new patient appointment or things like that. So to the, to the best of your ability, whatever you're capable of in that moment. Right. Especially if you're not going to seek emergency care, show up pleasant as possible, show up dressed as decently as possible, and you know, show up willing to have a conversation with someone and force someone to treat you as an active participant in your career. I think the next thing that I would say that has been very important for me, you have to follow up behind people. And by follow up behind people, I mean read your records, look at your blood test results, look at your post surgical reports. Like when I went back through my records for 20 years, I found so many things in the records that somebody put in a clinical note or in a radiology report that no one told me. My fibroids were known to doctors years before they told me about them. I've had ovari. I've had an ovarian cyst on my ovary that I have left for years and no one was telling me about it. Right. I would just see it for myself in the report. I have a liver hemangioma. Nobody told me that. Right. And it's an incidental thing. It's not a big deal.

[A]

And all of these are in your reports? Documents in reports.

[B]

But no one, they didn't feel the.

[A]

Need to communicate that.

[B]

Tell me. Right.

[A]

That's insane.

[B]

I've seen scans of my lungs where like there's like there may be some lobular pneumonia. Nobody said that to me because they were so focused on like, they're ruling out a pulmonary embolism. I have abnormal blood test results all the time where nobody says anything because the doctors even either haven't read them or they haven't felt like it was important to what they were focusing on. But with a patient like me, everything is important. Everything, unfortunately, is important to the overall clinical picture of treating someone like me. So you have to get comfortable with when something hits your. My chart. Go read it.

[A]

Okay.

[B]

Go read it. When you are going to see a new specialist, contact the healthcare center or system that you go through and ask for. Request all of your records, like your post surgical reports, like, ah. When I was in the middle of this exercise, I found out that I. During my myomectomy and nobody ever told me this, and this is crazy because I literally almost died. I had a reaction to the anesthesia.

[A]

Oh, okay. All right.

[B]

Malignant. Something that has to do with, like, you have a bad reaction to the anesthesia and basically your temperature spikes up and your vitals crash. And so they had to pause the surgery. And they never told me or my family about this. All they said when they came out was, surgery took longer than we thought, it was a little more challenging than we thought, and that was it. But then when I get the actual narrative report from the surgery, like, bitch, it read like an episode of Grey's Anatomy. They thought I was in there about to die. Nobody told me. And they should have because it matters for management of anesthesia for future surgery. So I had countless surgeries after that where no one had informed me or my future surgical teams that I had had this complication once.

[A]

Why is that not illegal?

[B]

I mean, I think technically it is, but so much time had elapsed. But this is the doctor that. I told you I didn't like that motherfucker. I told you that. I told you. So, like, you have to be willing to go behind doctors and read your reports. I think the final thing that I would say is you need to become an expert in your condition or conditions, whatever that looks like for your level of education. Cognition. Because I don't assume everybody can or wants to read medical journals, but it helps. Doctors don't have time to. They're supposed to, but they don't have time to read the latest journal articles. And standards of care change. Right? There are new treatments coming out all the time, although, I don't know, you know, the way they've wrecked public health infrastructure and studies and trials here right now. But like treatments change, there are new promising things that pop up. And often your doctors, particularly if they've been practicing for a long time, they don't know about it. I. There have been many times when I've introduced my physician to a new concept in treatment or that this is something that also happens within bodies as a part of this disease because it's newly recognized. Right. You have to become an expert in your conditions. And it sucks. We're tired yeah. The same lives that everyone else has. And we have, you know, the. The physical pain and the physical exhaustion. And now it's like, I gotta do one more thing. Yeah. I hate to say it. You do. You really do. And the final thing that I would just say is just be grateful. As hard as it is to live in a time frame where you have access to the specialists and the research and the medications. Right. There are some. Some conditions for which we're still at the starting line. Right. But there are other conditions for which like this, you know, 70 years ago was a death sentence for somebody.

[A]

Yeah.

[B]

And now it's like you live annoyed every day.

[A]

And I'd rather be annoyed than. I'd rather, you know, annoyed than being on my Deathbed.

[B]

Yeah. At 32.

[A]

Oh, these are. I'm. Thank you so much. Like this. Thank you so much. And I also would add, if I may, because y' all know, I'm. I. I don't live with this, but I have a sister who's a nurse, and I'm one of those people that you spoke about that doesn't necessarily have the wherewithal to sit there and, you know, and go through all of these documents in that way. If you got somebody in your family or your close circle who also can help you to understand, the same way that if you have a close friend or family member who's an attorney and you need them to help you with some legal jargon, I think it's also super, super helpful in the. In the medical field as well. And that's what's helped us. Right. Because the really fucked up thing is that with all of the good people and all of the people who are actually in this field, because this is what they love to do or, you know, they want to help find true solutions and changes to. To some of these conditions that people have been living with. We know a black woman is the one who came up with the. With the patent and with the cure for leprosy. Like, that was a black woman. So we need people like that in this world. Right. But also, on a whole, the system is really up and they're not held accountable in the way that they should. To the point where. When I lost my grandmother last year, I told the audience and, you know, that this was not like, I lost my grandmother because she was old and was getting ready to go. This was a medical malpractice. And what's helping us right now moving forward in, you know, pursuing this in a legal manner is we literally had to. We had to Link up with somebody who used to work in the department that fights people who fight the medical system for killing their relatives. And we have to get the insight from, from them to help us to fight this because it's like, okay, they got these loopholes and these loopholes and these loopholes. So I'm really grateful and I know the audience is really grateful for these things that you've shared and God damn, you deserve, you deserve some. I don't ease. Doesn't even feel appropriate. Like I just, it doesn't even feel appropriate.

[B]

Yeah, because, you know, as I said, life continues to. Life on top of and around all of these things and so on top.

[A]

Exactly. Other things that you can't control as well.

[B]

Yeah, yeah. So, you know, I, I every year pray that like this year is going to be a healthy year. And by healthy, that doesn't mean I'm not sick, I don't have any problems. It just means that I have more good days than bad. And, and you know, maybe I managed to stay out of the hospital or not have a surgery and not collect a new specialist. Unfortunately, I told 2026 to come in here and sit down and not touch. And she said, I'll knock all this over.

[A]

Not a, not a cat of a year.

[B]

I have already collected a new specialist this year. But even in that I'm grateful because, you know, the, the possibilities for what it could have been were really ugly. And so far it looks like it is just more of my normal, which I can handle. I can, I can handle that.

[A]

So. Okay.

[B]

Okay.

[A]

All right, I'm gonna ask you a couple more questions.

[B]

Go for it.

[A]

If you could, ideally, in a fully ideal world, if you could redesign the healthcare system based on your personal experiences, what would you change?

[B]

First, This is truly, truly ideal state.

[A]

Truly ideal.

[B]

So the way that people are cared for when they end up in like ICU with multi organ failure is that every morning there is a consortium of all of the different specialists treating them. They get in a room, they get on their zoom and you might have like a radiologist, a pulmonologist, a nephrologist, an oncologist, a hematologist, like all in the same room or on the same call to discuss the case and bounce ideas for treatments off of one another. Right. If that was, and I know all of the reasons why it's not, but if that was the immediate standard of care when someone is diagnosed with one or more complex or chronic illnesses that impact multiple organ systems throughout the body, that right out the gate you are assigned A multidisciplinary care team that has specialists that are most importantly, experienced with your condition. And that because they work in these multidisciplinary teams to treat this condition, are up on the latest treatments, the latest research, but then they're working together. So no one doctor is in isolation. Everybody is working together. Everyone is seeing what treatments are happening in this area, what the blood test results look like in this area, and they're working together, together for the benefit of that patient. Like, if that was just the standard of care. And hey, we heard you were diagnosed with lupus. Here's your welcome packet that has your rheumatologist, your nephrologist, your pulmonologist, your cardiologist. And maybe you don't need all of them yet, but the way we're going to start you off is with a baseline assessment of all of your critical organ systems to make sure they're okay, rather than waiting until you start to have symptoms. And, like, that would be. And I know all the reasons why it's impractical, and I know all the reasons why it doesn't work for, you know, generally healthy people. Right. But that could be the standard of care. The moment you are diagnosed with a complex, chronic, lifelong disease, oh, my God, what a much better world it would be for those of us who live that life.

[A]

What do you think you've learned about yourself through this process that surprised you.

[B]

How spiteful I am?

[A]

Say more.

[B]

Because, like, there are a lot of times when. Where I am existing off of sheer spite and just, like, negative vibes. Like, I'm just here because I want to prove that I can still be here. The only reason why I haven't given up, the only reason why I still get out of bed is as a fuck you to whatever my target is that day, whether it is a doctor, whether it is my body itself, whether it is just the universe in general. Like, I have surprised myself with how often? Because I'm not a spiteful person. Like, when it comes to dealing with other people. Right?

[A]

Like, no, you're not.

[B]

Typically, I have some shit with somebody aside from one specific person. And if you follow me online, you.

[A]

Know, she's a Taurus.

[B]

You know, she. If we're not talking about her, just, like, things just roll off of me. I don't.

[A]

Yeah.

[B]

So I'm not really a spiteful person overall. But when it comes to, like, I need to prove this particular doctor that had me up wrong or prove to my body, oh, you. You tried to take me out the game when I was about to go do something that I'm really gonna enjoy or whatever. Like, I've been surprised by just how often I am just existing on Malaysia Malevolence. Like, it's been really shocking.

[A]

I want to call this episode existing on malevolence, but I feel like. I don't know if I'm saying I.

[B]

Don'T think people will understand what it means.

[A]

They'll have to listen to the whole conversation.

[B]

Hateful vibe is truly. It's like coffee hateful vibes some mornings. And that's all that I have.

[A]

So, yeah, I've been, wow, look at our intersection.

[B]

I've been surprised by how often I don't have a positive standpoint from which to approach my life or my day, but I still do it anyway.

[A]

I was not expecting that answer, so thank you.

[B]

That's also why, despite the fact that, like, this is a disease that takes a lot from people in way of appearance, right? Like, some people have scarring, lupus, that leads to alopecia and bald spots. It can lead to thinning of your hair. It can. Like, in the case of what I'm talking about with my eyes, it can deform the shape of your eyelids. You have swelling. You can gain a lot of weight from some of the medications that you're on and things. And, like, I'm like, no, I'm going to be a bad bitch, period. Like, and it doesn't matter. I may not be a bad 24, 7, 365, but when it's time to pop out, I'm still gonna pop out. And I'm not gonna look like what I'm going through and then do that is. Thank you. That is a mechanism. I ate that one thing down, right? That is a mechanism of spite. It is. It is pure spite.

[A]

Because it's just because you, whoever you is you, whoever you is for that day, it's yes, yes, yes, you too.

[B]

That's why.

[A]

That might be what I call that episode, because.

[B]

I like that.

[A]

If you were to talk to a younger black woman who doesn't know that she's getting ready to have an undertaking in this. In this world, what message would you want her to carry through her health journey?

[B]

That's really hard because you know what you want to say to somebody is, don't give up. You got this. But I also hate what I call toxic positivity. Like, sometimes shit sucks, and it's okay to say that it sucks. And sometimes I'm not gonna hold you. I have never been a person who finds Fault in somebody deciding that they simply cannot go on and they can't do this anymore because nobody knows what you're going through. So I'm always very careful about the platitudes and the advice that I try to give to people. What I will say is, you are stronger than you know where you want to be or not. Because I'm tired of being on God's strongest soldiers list year after year after year after year. But I'm here. And you, you will be too, as long as you are physically able to and continue to make the choice to be every day. I would also say get very comfortable with saying no and conserving the energy that you need to survive. We spend a lot of time early in our illnesses, and I still, I still, you know this. I still push myself too far sometimes. But you lose a lot of time feeling ill and sick because you pushed yourself too far to prove a point to someone or because you don't want to let someone down. And at a certain point, you have to accept you are not like other people, and that's okay. And so you have to create and protect certain boundaries. Like everybody in my life knows, generally speaking, I don't leave my house on Sunday. I need one day to do nothing. You want to see me on a Sunday? You gonna come over here and sit in my bed with me? So get very grounded in. You are not the same. That is okay. Have and protect those boundaries. I think those are the two things that I would say with you.

[A]

Saying that is sparked. If you love a person who lives with chronic or complex issues, what do you think is the best way to love and support those people?

[B]

Number one, listen to them and believe them. A lot of us have people in our families, in our homes who do not fully believe the extent of what's wrong with us. And listen to them, believe them, support them. If they ask you to go to a doctor's appointment, take your ass down to that medicine medical office. If you are in a relationship with someone who is not able to do things that they used to be able to do or that are stereotypical of their gender except that you're gonna have to pick up some slack. Right. If you are not. When it comes to romantic relationships, if you are not somebody who has a truly caring, nurturing want to give, stay your ass the away from somebody who has a chronic illness. Because the thing about us is stress makes our conditions worse. And you stressing us out literally makes us more sick.

[A]

Yeah.

[B]

And a lot of stress that we encounter on a Day to day basis is with people who either don't believe us or they think we should be doing more for them or we are doing a lot for them and we're pushing and we're showing up, but when we're down, it's not being reciprocated. You have to, you know, find out what are meaningful ways to help them. Whether that is you do more housework where you get a housekeeper, or you accept that even though you're a man who married a woman and you wanted a woman who was going to cook every night, odds are your wife or your girlfriend has this condition and she works every day. Like y' all gonna be doordashing quite a bit. Get used to it. Find some favorite restaurants. Rhymes. Or maybe she's not able to be sexually active with you as much as you would like, Like. Sorry. Okay. I mean this is, this is you.

[A]

In your hand tonight. My or figure out whatever you all's arrangement.

[B]

You really have to have a giving. You really have to have like a giving spirit. So you have to listen. You have to find out what's hard for them and look to lighten the load in, in ways that work for you. And this is not to say that like most of the people that I know who are very sick, we are, we will work ourselves to the bone for other people. Like we will, you know, we still. I'm a cook, I'm a clean. I'm a. Because it's hard for us to accept the fact that we're not like everybody else, right? So when someone like that says to you, you, I can't, I've hit a wall, I can't go anymore. Accept that and step in and step up. If you're not in a romantic relationship and you are a friend or you know, a relative or something like that, again, the advice of listening and, and being, you know, accepting that what they say is true, that applies to everybody. The other advice, don't. Don't tell nobody who has been living with a chronic or complex or rare condition for any period of time about your cousin sissy's auntie or the, the ragweed pills that they're taking or apricot seeds or ivermectin or whatever the. Shut the up, shut up, shut up.

[A]

Listen, y' all know, y' all know I'm a crunchy, right? But I not getting.

[B]

Your own house or your own salad. Shut the up talking to us.

[A]

Nobody. Somebody who said my valves are pinched, I can't breathe, my chest is on fire. I okay you. I Can't let me. Let me stay in my lane.

[B]

Nobody wants to feel better than we do.

[A]

Yeah.

[B]

We are doing everything in our power to feel better.

[A]

Yeah.

[B]

And a lot of the stuff that y' all like to throw at us is unhelpful. It's unproven. It might actually make our condition worse. And you're approaching us as if we don't know more about our condition than you do. Shut the up. Don't. Don't tell me nothing about what this doctor in Honduras said. Don't tell me nothing about my diet that I need to switch. Don't talk to me about a turmeric pill, bitch. I took turmeric pills. My fingertips were staying yellow. It did not fucking help. Shut up.

[A]

I apologize to anybody I've told to take turmeric and bromelain for their inflammation if it.

[B]

But the thing is. The thing is. The thing is telling someone to take that for generalized inflammation is one thing. And you and I have talked about turmeric before, right? You might have been the person who prompted me to get them little yellow ass pills. If I was. I tried.

[A]

Didn't work.

[B]

It didn't work, you said.

[A]

Because I am. Look, we are the house. Your construction and my construction is different.

[B]

And also, you and I have a relationship where you can do that.

[A]

A lot of times I don't go online.

[B]

We don't have a relationship with trying to tell us what to do to manage a condition in our bodies that we're very intimately familiar with. Like.

[A]

Yes.

[B]

Use that energy instead to ask what you can do to actually help that person or to just come sit with them. Because sometimes we just need to just cry into somebody's lap about how unfair.

[A]

Yeah.

[B]

Whatever the current day's ailments are. Right? So just, you know, talk to people, listen to people, be supportive, and just understand. And here's another thing.

[A]

Please.

[B]

Every chronic illness person will tell you that they've had this experience multiple times in their lives. And I'm going to tell y', all, like, please stop doing this. If somebody who has a really serious illness says they're tired, do not say, I'm tired, too, because you have no idea, no idea what the type of exhaustion is that we deal with. With. They're not the same. And. And I understand. Everybody's tired. Look around outside. We are all bone tired, weary, exhausted, of America, of the globe, of Elon Musk, of white folks in general, of course, in America, of this.

[A]

Of the Epstein files, of the idf, everybody.

[B]

And that's not to say That I don't believe that you are tired in your fucking bones, mama. And sir and whoever else I'm talking to, somebody who is sick says I'm tired, do not automatically say in response I'm tired too because you have no idea. You have no idea.

[A]

None. Yeah, thank you for that. And you know what? We were going to go into our last two, our last two segments but I think you kind of really.

[B]

I ran out the clock.

[A]

No, you didn't even run out the clock. You literally covered all the bits basis because you're. We do self care and, and, or, and I know that's right where it's like a celebration of something you did for yourself. You have saved your own life. You have trill. You have saved your own life. You have advocated for yourself up and down the block. I think that's the biggest I, I know that's right that you can have and your petty peis don't recommend your powdery yellow capsules to me. I am really sick.

[B]

Unless your pills are going to completely shut off my immune system, then just don't even. I mean I'm sure we all would love it if some over the counter thing or weed out of our backyard would work because I mean my medications, my infusion is $5,000 a month. The pills that I take are $2,000 a month. Like I wish that I could go dig up Dandelion in my backyard and be done.

[A]

That'd be the hear these prices too. What. How disgusting from this health care system to gouge people in this way for things that they actually need to sustain their lives. How hateful and harmful.

[B]

I have great insurance and the bin lista infusion they have like a patient assistance program where basically anybody who gets on the drug who has private insurance, they enroll you in this plan. It's not like income based or anything and they cover whatever is not covered. So I'm not putting a ton of money out of pocket towards those medications every month. But if I didn't have insurance like it's $7,000 a month.

[A]

So many people don't.

[B]

It is, it is, you know, but there's also the CO pays for all the different doctors visits. There's the CO pays for all the different imaging that I read require. Like last week I saw my primary care physician, I had an infusion, I had a CT of my head and I had to refill out my prescriptions. Last week I spent 500 out of my pocket for imaging and medications. And I know y' all see how much everything costs outside right now. So, like, yeah, I wish I didn't have to spend that because I could put it towards other things. But so if, if I thought that, you know, if, if just turmeric pills works, like, that would be. I would be like, you really did your big one, God. Like, you really, you really did. That's not to say you didn't do your big one, God.

[A]

But, no, but, no, but, no. Wow. Thank you so much. This is going to be really helpful for somebody who is navigating this, this world. This is going to be helpful for somebody who maybe at the start of their chronic illness journey and they don't know where to start and they don't have the support that they need because oftentimes we don't know the people who are there to support. You don't have any clue on how to do so, as you just said. So this is, this is going to be, this is invaluable information, truly, and I'm really thankful for you coming and spending this time and talking, talking to the people. Whoever needs to hear it, needs to hear it now. Is there a place where the folks can hit you up if they have any additional questions or if they have something specific that we weren't able to touch on in this conversation?

[B]

Sure. I'm not super active on social media anymore, but I do pop in on threads several times a week. So if you want to find me on threads, my username there is silent. Perhaps shut the fuck up a little more.

[A]

You know what? That's actually the name of this episode. Yeah.

[B]

So Friends is open. It's not private. It's silence. Perhaps. I am there and I am more than happy to answer questions or talk to anybody or encourage anybody, you know, on this journey. I'm. I'm happy to be here. And I should have come sooner because, you know, as I shared with you, one of the things that kept me active online for so long was that there were just countless times where somebody would come to me and say, hey, I'm having this issue. I'm having these symptoms. I am not sure where to go. And we would have a private conversation and I could encourage them and give them next steps. And I've had a lot of people come back to me and say, I finally got a diagnosis. Or, you know, I just got approved for Ben Listo, or I, you know, whatever. And I've always felt like it was worth it to share because I know that I had a reputation for being private about the details of my life. I've always Had a reputation for being extremely graphically open about the things that I go through with my body. And it has always been because I so often felt alone and I realized that other people did and being able to share and talk about these. These things that you feel like nobody else is going through, especially when there's no one, you know, directly in your life that can relate to it. So I am, you know, very happy to have been here today and thank you for having me. And I really hope that this episode blesses somebody and if it doesn't, bless me because you. That's why.

[A]

So many titles. How do I choose? No, I'm. I'm so grateful. I know Key is so grateful. If you see she was here in spirit because she also, you all know she deals with her ra.

[B]

Yeah.

[A]

And so. And so I know there is somebody out there that this is going to ping and this is going to hit. And again, for those who are also supporting those who live with chronic conditions and chronic illnesses, this is also a very important conversation. So I'll have all of Nikki's. Well, her one information in the description box. So you are. You can contact her. But maybe, I don't know, I'm just putting it out there. I don't know, maybe this will spark some sort of. Maybe you put. Maybe this is your life's work. Maybe you are here to help other people to advocate for their health journeys as well. I don't know. We'll talk.

[B]

I mean, since I wanted a black women push the hell out of corporate America, I.

[A]

Which is insane.

[B]

Might be time. Might be time to pivot. Maybe this is.

[A]

I'm just saying this is a one year. Okay? I'm gonna come to you with my two miracle. It's a one year. It's a new beginning.

[B]

Okay?

[A]

So, you know, we have just shed many, many, many old things. Is also in, you know, a Chinese New Year. So it is a fresh year. I don't. New beginnings for things. This may be your calling.

[B]

I'm just saying maybe this is your call. Have enjoyed being here today, so I've enjoyed having you.

[A]

You all check out Nikki's information in the description box. Even for your own entertainment. You can go to her threads. She's always talking about something, whether it be Shark Week or. Or. And it's always in a very entertaining and colorful way. And I mean that very sincerely. I mean that so sincerely. So you all go check her out. Thank you so much for listening. We're sending love to Kia. And lastly, make sure that you drink your water. Mind your business. Mind your bit. Especially mind your business, okay? If your business needs you to really mind it and nobody else's. In cases like this, make sure you're doing that and moisturize everything on your body because you should be very grateful that you have one and your black will crack if it's dry. Bye.

[B]

Eczema is unpredictable, but you can flare less with Epglis, a once monthly treatment for moderate to severe eczema after an initial four month or longer dosing phase. About four in 10 people taking Eglis achieved itch relief and clear or almost clear skin at 16 weeks, and most of those people maintain skin that's still more clear at one year with monthly dosing.

[A]

Emplis Lebricizumab LBKZ, a 250 milligram per day 2 milliliter injection is a prescription medicine used to treat adults and children 12 years of age and older who weigh at least 88 pounds or 40 kilograms with moderate to severe eczema, also called atopic dermatitis that is not well controlled with prescription therapies used on the skin or topicals or who cannot use topical therapies. EBGLIS can be used with or without topical corticosteroids. Don't use if you're allergic to ebglis. Allergic reactions can occur that can be severe. Eye problems can occur. Tell your doctor if you have new or worsening eye problems. You should not receive a live action vaccine when treated with Ebglis before starting Eglis. Tell your doctor if you have a parasitic infection.

[B]

Ask your doctor about eglis and visit ebgliss.lily.com or call 1-800-lilyrx or 1-800-545-5979. Hi, I'm Kalen Coleman, winner of Target's HBCU Design Challenge. This challenge moved me closer to my dream of becoming a fashion designer through mentorship and support. You can find my design, along with creations from other Black founders in Target's Black History Month collection.