GETTING COMFORTABLE WITH THE UNCOMFORTABLE
TONI: Believe it or not, all of that, is as comfortable as it gets for me.
TONI: The truth is, when all of that fades away and life gets real, that’s when things can start to get uncomfortable.
JESSICA: Hi, everyone. I'm Jessica Vilchis and today we’re talking about lupus, kidney health, and getting uncomfortable. I am so honored and excited to be joined by the legendary Toni Braxton, who will share her personal lupus journey and the uncomfortable moments she’s faced along the way. Toni’s rheumatologist, Dr. Wallace, is also here…
DANIEL: A real pleasure.
JESSICA: …as well as Dr. Geraldino…and Dr. Desai. Thank you all so much for being here today.
SHEETAL: Hello!
JESSICA: So, Toni, I want to go back. Walk me through your journey living with lupus. What were those first moments when you were diagnosed? What were you going through? What were you experiencing?
TONI: You know, it was a difficult time for me, because no one knew what was wrong with me. I think that lupus is difficult to diagnose. You need specialists and doctors such as these wonderful people on the panel. And I knew something was wrong with my body. I think most people know something’s not right and they dismiss it. It was all these things and one doctor said to me ”she may have lupus.” And they said no, no, it’s not lupus, it’s not lupus. She doesn’t have this, she doesn’t have that. So, we dismissed me having lupus, and it took years for someone to say, mmm, she needs to see a rheumatologist; this doesn’t feel right.
DANIEL: It takes an average three to four years from the onset of symptoms to the diagnosis. And most people with lupus are young women and they’re in their prime of life. And, oh, you’re just tired, you’re achy, you’re depressed. You want us to feel sorry for you. And that’s not the case.
SHEETAL: And that’s a hard thing. On the outside, what people see is they’re normal but on the inside that’s not how they feel.
TONI: Everything has to line up, like an eclipse almost, for doctors to feel comfortable diagnosing you with lupus. So that’s why it’s important to go to specialists like rheumatologists.
SHEETAL: Yes, exactly.
JESSICA: Ok, so let’s talk about lupus, specifically lupus nephritis. This is where it affects the kidneys. What does it mean to have lupus nephritis?
SHEETAL: Lupus is an autoimmune condition that no two patients are alike. But if something about the lupus attacks the kidneys, it’ll cause inflammation. And some of the earlier findings is you’re spilling protein where you’re not supposed to be spilling protein. The kidneys try to keep it in.
LAURA: It’s an essential organ and when it’s not working properly those things happen and you might end up then needing dialysis, a kidney transplant.
JESSICA: Wow. Okay. So, there’s lupus, there’s lupus nephritis. I want to talk about the percentage of patients that can develop lupus nephritis. If there’s somebody listening thinking I have lupus, I probably won’t get lupus nephritis, what is the percentage of that happening?
LAURA: We’re talking about up to 50% of people living with lupus having their kidneys involved. So that’s quite a high number.
JESSICA: Ok, so I want to talk more about kidney health. How do you monitor the kidney health of people who are living with lupus nephritis?
LAURA: So, in [that] urine we’re measuring the protein content there. That 0.5 number of protein in the urine, is really key. That’s the number where we start getting concerned that the lupus could be involving the kidneys. So, that’s the first indicator that there’s something wrong and that leads to further workup. We’re also checking on the blood, how the waste that the kidneys normally clear out from the body, how that is accumulating. If you see that the creatinine is getting higher that’s another indicator there.
SHEETAL: And between the bloodwork for the kidneys and the urine test, we’re able to gauge if there’s inflammation.
JESSICA: Okay. So, if we’re talking with somebody who is living with lupus nephritis, how often should they go get their urine tested?
SHEETAL: Minimum every three months.
DANIEL: Every three months.
SHEETAL: Minimum.
JESSICA: And why is it so important to do it this frequent?
DANIEL: It’s silent. It can sneak up on you. And you can’t let it ride. You can’t just say, “Oh, we’ll wait till tomorrow.”
LAURA: I always tell my patients we have to be checking no matter what, even if you're feeling great, if things seem controlled, because it might be that there’s no sign that you could see…if that inflammation in the kidneys keeps on going on, then that leads to scarring, just irreversible damage of those kidneys. And at that point, we’re too late to really try to intervene.
JESSICA: So Toni, I want to know how you manage all of these appointments as an entertainer, as a mother, as a family woman. I have kids and a job. I couldn’t imagine having to schedule time for myself. I can barely take care of myself. How do you manage all that and how do you motivate yourself to push through?
TONI: Motivating myself is what I have to do often. But you have to learn to say, you know what? I'm not going to make an excuse today. Today, I'm going to get up and I'm going to do something about it. I'm going to make a call. I’m going to get a doctor if I don’t have one. And if I do have a doctor, I'm going to call and say hi to someone there to get me—get an appointment and just take care of myself.
JESSICA: So, Toni, you know what it’s like to face uncomfortable moments at the doctor.
TONI: Absolutely.
JESSICA: What is it that makes you uncomfortable?
TONI: Oh gosh, I dread the blood. I dread giving the blood. I hate it. My veins, they move around a lot. You know, they like to party and hang out sometimes and that’s the part I hate more than anything. Although, peeing in the cup can–that’s not my favorite either.
JESSICA: In those moments, what is the one motivator that is making you go to these appointments, making you want to continue getting help and seeking help because if you don't, you know, something tragic could happen?
TONI: Yeah, most of the time I don’t feel like going. I don’t want to make the time to go. But I know it’s important to make the time to go, like I said, for myself and my family and just to feel better about myself, to take that hopelessness; that you feel sometimes; away, because there’s no reason I can’t live to be 100 years old.
LAURA: Of course, this is something that we can control, and we’re going to be checking on things periodically to make sure everything’s fine. But it’s something that we’ll always need to be checking on.
TONI: Knowing what you should be doing and not doing it is worse. It just makes you feel relieved, like I did something good for myself.
JESSICA: It also gives you that courage to continue.
TONI: Continue.
LAURA: It empowers people to have control, not having control is what’s really uncomfortable, not knowing what to expect but setting everything upfront knowing your numbers, you know?
TONI: Yes.
JESSICA: And Toni, one last question. If there’s one message you could give to the community living with lupus, what would it be?
TONI: You know I would tell them It’s okay to be uncomfortable. And, go to your doctor, get yourself checked out. And you’re going to have great days, and things will get better.
JESSICA: Thank you.
TONI: Thank you.
JESSICA: Well, thank you all so much for getting comfortable with the uncomfortable with us today. I know it’s a really tough conversation, but an important one for many people living with lupus and lupus nephritis to have. To learn more or to find a doctor near you, just visit the website at getuncomfortable.com.
