SPEAKER_00 0:12

Hello, my name is Taylor Lopez. I'm the Health Communications Director here at the National Minority Quality Forum. And I am joined here today by the lovely Miss Kimberly Bodhi. She is a lupus patient as well as a lupus warrior and a lupus patient advocate. And Miss Bodhi, I have to say I admire you so much about what you're doing. I know the journey with lupus cannot, it's probably not easy at all, and you're doing an amazing job in the advocacy space. But I want to start with when you were first diagnosed. Um, what made you, you know, go and seek care to find out if you had lupus or you know what was going on with your body?

SPEAKER_01 0:52

So my journey started in 2020 with the COVID impact. No, I did not get COVID, but I started having a lot of health issues. I started having some back pain. My breast started changing colors, the way it felt. So I went to the emergency room, they said low potassium, and I said, Well, okay. So, you know, I took the potassium pills and kept going. But the pain progressed. So I went to my primary care to follow up after the emergency room visit and she noticed the change in my breast as well. She had sent me for a mammogram. They said breasts looked totally different. You need 3D. Kept going back and forth to the emergency room to the doctor. Finally, my primary care sent me to a breast cancer specialist. She said it wasn't breast cancer. I needed to go see an OB specialist. I went to the OB specialist, and the specialist detected that I had a five-pound fibroid that had calcified, died, embedded itself in my uterus. So my body thought I was 11 weeks pregnant.

SPEAKER_00 1:54

Wow.

SPEAKER_01 1:55

So my breasts were trying to lactate. So I had granulomal mastitis. So March 2020, I had a hysterectomy. I was released two days before the world shut down. During that time, I was still having issues with my breast. So then I had to have a double mastectomy in July 2020. When I came out of that surgery, both my hands turned blue. That's when they detected that I had Ray Nud syndrome. And the infectious disease doctor then stated you need to go see a rheumatologist, there's something still wrong with your blood. In August 2020, they found discoid lupus, which now has progressed to SLE.

SPEAKER_00 2:33

Wow, so you had to see a number of specialists before you received an accurate diagnosis of lupus.

SPEAKER_01 2:40

Yes, generally it takes six years for a lupus patient to get properly diagnosed, but with me, I'm a unicorn in these streets. So they say it was six months, my world got flipped, turned upside down.

SPEAKER_00 2:52

And so prior to your diagnosis, how much did you know about lupus? Like were you familiar with it? You were you an expert in it? How much did you know about lupus?

SPEAKER_01 3:00

I have a church member that has lupus, and she's wheelchair bound, and that's all I knew about it. That she had um various health issues back and forth in the hospital. Sometimes we wouldn't see her in church, but I wasn't as involved. I of course kept her in my prayers, but I did not research or anything about it until it actually impacted me, and she started walking alongside me and our hope keepers' ministry at Worcestream Church.

SPEAKER_00 3:26

Wonderful. And I imagine with your type of diagnosis, you're probably taking, you know, a number of medications. Um, how are you managing, you know, your medications? Like, do you have a system set up? Like, have you found it very difficult to keep up with your medications, or how are you managing that?

SPEAKER_01 3:47

So, due to the difficult morbidities I had coming out of the hospital, I was on 20 pills when I got released. Oh my god. Due to high blood pressure and things of that nature, they were still trying to figure out what was going on in my body. But recently I've been able to advocate myself through research and learning and becoming an uh ambassador for the Lupus Foundation of America to one get off the steroids because the steroids have an ill effect on your bodies, causes people to have hip replacements, knee replacements, ankle issues, because it's deteriorating your organs. So I take hydroxychloroquine and I take by um steroids timely times, like if I'm in a flare and then I'm on blood, two blood pressure medicine, one for my blood pressure, I'm starting, and amlodapine helps with the ranods as well. So generally, when you have lupus, it comes with other friends in the auto community. So I have three, I deal with chogens, lupus, and rhinods. But as far as I'm concerned, I have mild discord and I have mild SLE, so I'm not on any biologics or anything that's taking, you know, intravenously at the moment.

SPEAKER_00 5:04

So I I can imagine that is so much to manage and keep track of. Um, you know, now you are, you know, you went from diagnosis and now you're in this advocacy space um with lupus. How did you get into you know advocating for you know lupus?

SPEAKER_01 5:22

Well, I learned about the lupus foundation of America through social media, Facebook, and I started a uh I did the online one first in 2022. They told you to welcome out the community, take your pictures, send it in. 2023 I actually did the full fundraiser on Facebook and I became the top fundraiser, so I was able to uh do the whole like scissor thing and cut the ribbon and everything like that. But I was so exhausted because even though it's only a mile, you're there all morning. So walking around, taking pictures, interviews, things of that nature, I was exhausted. So it taught me a lot about how I needed to prepare for the next year, but it also showed my friends and family that would there cheering me on what I go through, and they saw the extent of what fatigue is because a lot of people don't understand the extent of the fatigue. The next year they asked me to sit on a panel as a warrior, so I told my story there, and then they asked me to be an ambassador after that, and then I joined a support group, and then I like I would like to do a support group as well, so I'm doing the support group as well, and I just got inducted into the Lupus Research Action Network that delves more into clinical trials.

SPEAKER_00 6:40

Congratulations! And now while we're on the topic of clinical trial, so I think you know, we both know that clinical trials is something that a lot of folks in our communities are not very aware of, they might not have a lot of knowledge about or even what kind of questions to ask, especially when it comes to lupus clinical trials. Um, what kind of information or advice can you give to other lupus patients who might be, you know, interested in a clinical trial or considering a clinical trial but just don't know where to start or even what kind of questions to ask their doctor?

SPEAKER_01 7:14

First of all, I would ask them to actually see what their boundaries and parameters are with their family. Some clinical trials is just taking statistics, demographics, things of that nature. Some of them you're actually hospitalized, taking the medicine, doing the trial. So see what your boundaries are first, then reach out to your rheumatologist, see if they are progressive and advanced in that area. If they're not, then as an ambassador of the Lucas Foundation of America, I would ask them to join Ray, which is Research Accelerated by You. It's a soft launch into those types of clinical trials, and it'll be able to match you to different states, different types, and to see where you will want to be. And not to be hesitant. Yes, a lot has happened in our lives as far as the BIPOC community with clinical trials, but to know that we have safeguards now, there are laws, you know, you don't have to stay. If you don't like the way you're being treated, you can come out of it. But that anything that you eat, drink, wear has been tested on somebody. So the stigma of clinical trial really needs to be taken down because it's not what a lot of people have in their hearts and minds for it to be. But as an ambassador with my um lupus team as well with the chronic disease coalition, it's just spreading awareness. It starts with education. So know what you want to do first. Are you truly trying to go for the disease awareness? Are you trying to cut down on your symptoms or are you really trying to go for a cure and then see which avenues that are available for you to move forward?

SPEAKER_00 8:53

Well, Kimberly, I cannot thank you enough for sitting down with me and sharing your journey with me. For anyone that's watching now, um, could you share where they might be able to find you or reach out to you on social media or online? Uh yes, so I'm on everything.

SPEAKER_01 9:10

I'm on LinkedIn, Kimberly Bodie, I'm on Facebook, Kimberly Bodie, I'm on Instagram, Beautiful Live314, B-E-A-U-T-I-F-L-E-Y-E 314. I'm on Twitter, I'm on Blue Sky, I'm on YouTube, I'm on everything.

SPEAKER_00 9:28

Wonderful. So there's no excuse that's why someone cannot find you. You are a wonderful resource. I'm sure there's going to be a ton of people reaching out to you after viewing this. Thank you again for sitting down with me. And for you all watching, if you would like more information on lupus as well as lupus clinical trials, you can visit beyond-lupus.org.