On August 13th, 2021, Lupus Warrior- Zoe Lozano and I, Rachel Clare Weiss, went live on Instagram for a Q&A to talk about all things Lupus! Below are seven of the Q&A!
Question 1: What age were you when you were diagnosed with Lupus?
Answer 1: I was diagnosed when I was 37; I am almost 44. I have two children, and I'm married; my husband and my children have been very supportive, and we've all been learning through this journey.
Question 2: What type of Lupus do you have?
Answer 2: I have Lupus SLE, which is Lupus Systemic Erythematosus; basically, that's the one that affects your organs, so there's a lot of inflammation inside of you that can affect your kidneys, your liver and also your brain, and the lungs, so basically the main organs. Now I have Lupus SLE right, but there's a different one, which is Lupus SLE Discoid, which affects more skin types. So you know how they talk about the flares and the butterflies, the butterfly rash, that's why the butterfly is the symbol for Lupus. It doesn't affect us all the same.
Question 3: Do you feel like many people know that, or do you feel like people, when they hear that someone has Lupus, think it's the same as somebody else who has it?
Answer 3: Exactly, that's the thing, some people give you the diagnosis, and they tell you that you have Lupus and the doctors that tell you that your blood work came like this, and your inflammation levels are high, so they tell us that you have a chronic disease and most likely it's Rheumatoid Arthritis or Lupus and sometimes it's tricky because, at the beginning like when I started, I couldn't even do exercise or high knees, I had to help myself with like work. We used to have five cabinets, and I used to help myself go up to look for the files and the ones underneath, so um, then that's when I started to worry. In the mornings, I felt heavy, my legs, everything felt heavy, like I did a lot of exercises, and I felt super tired. It's always good to listen to your body because sometimes we live this hectic life, especially if you have a business or social media and run something, your family, your house, and you know your life in general. You can be so overwhelmed by all that stuff, and you're like, I feel something, but it's okay you tell your body to be quiet. That happened to me in 2016; I was kind of in denial, so the first step was they told me I'm a nutritionist, so I was helping people lose weight and always focus on losing weight and having a healthy relationship with food. That happened to me, and they gave me the diagnosis of Lupus, and the first thing they told me is I have Sjogren's syndrome. It affects your eyes, the whole system. You can't cry; you run out of those glands, it affects your glands. You're always dehydrated. You need to drink more water than you're supposed to, and even though you drink more water, you're still thirsty, so it's kind of complicated to manage those. Because normally, when you have one chronic disease, it always comes with another one.
Question 4: What do you do to raise awareness, and how does it truly affect you personally? Your day-to-day, the most significant impacts that it takes on you and your family.
Answer 4: Every day, it's got a challenge; you have to wake up and hope for the best and best attitude. For example, my social media, my @onederfulfood page I started, more than having followers or knowing different things, which is nice, I like collaborations with different brands. Still, more than that, I wanted to show the other side of food. Basically, it's not just to have fear with food. Every day when I plan something to put on my page, I'm thinking about people who have Lupus and think about the healthy people; I didn't want to do it just about myself. I wanted to do it to share the positive side when you have a healthy lifestyle. It's challenging. For example, in my case, some friends told me, I didn't even know you were sick because you look normal, you look great and everything, so I was like, yeah well, it's something that is going on inside of you, it's literally like a war every single day. Thankfully I found the right doctor, so I wanted to tell you that my support system, of course, my kids, my husband, my friends, I have great friends and support system with my church. You can't do it alone. It's something that you have to take every single day and balance the food that you eat.
Question 5: What does that look like for you? How do you balance your day?
Answer 5: For example, I know a lot is going on, like food freedom and on Instagram, and listening to your body, yes. It's good to do that and to have a good relationship with food. You have to treat every patient or client individually because you never know what this food will cause in their bodies or try to balance. That's why I was in the hospital in the beginning twice because I was reading so much, and it was exhausting, it is exhausting. Sometimes you don't even want to realize that it's just too much, and at one point, I talked to my dad, who is a medical doctor in Mexico, and I told him after going to the doctor, "can you just come and explain that to me!" "I'm just tired of reading." In 2019 when I felt so sick, you can check out my Instagram, where you will see I was wearing a wig, my hair started falling because of my kidneys. I am still battling with my kidneys. Sometimes it can affect your liver or your lungs or your brain, or your kidney. Fortunately, I found this good doctor, and they acted quickly with the right medication. But, they treat you as another patient; they care about me, but at some point, treat the disease. They don't treat you by who you are. I was probably taking five or six medications in that very small period. That messed up my whole body. It got to the point because they saw how inflamed my kidneys were that they gave me the medication for it, which only made it worse, and I almost had to go on dialysis. I was reading then thinking, "okay, so with dialysis and kidneys going down; you probably live another ten years," I was like, "no, I want to live more than that!'"
Question 6: What did you do when you were faced with this challenge?
Answer 6: It was really, really hard. Now I can share about that. I'm excited about using my learning from the classes I took, like holistic nutrition and everything you can do to support your adrenal system and Sjorgens syndrome, your skin, your kidneys. Instead of worrying about the problem, I try to focus on the solution. Don't put your mind every single day, "oh, I have this, I feel like I am going to die." If you have a different attitude towards whatever is going on with you in life, you can survive, you can get better, you're sending signals to your mind, positive signs, and some can be a war inside of you. Sometimes we're so mean with ourselves, so mean, we talk very negatively, we tell bad things to ourselves. For example, I use to weigh 120 pounds, with all the medication, I gained about 20 lbs in a month. I was up to 138 pounds, and I'm 5'2", so I felt bloated my body, and it was hard to accept that because you see yourself like that, and then for me, it made me feel like, oh my gosh, I need to be super skinny, I need to be less than 120 pounds, and I was always worried about that. I just wanted to create this space to focus on eating healthy and being healthy instead of focusing on your weight and how you look. Every day as you work on this, it will fall into place. Health and wellness are not just what we think, what we speak, what we eat, what we drink; it's everything. There's no way you can achieve that wellness or health without changing your mindset.
You can follow Zoe as she flourishes on her journey personally and helping others through nutrition on her @onderfulfood page!
You can listen live by clicking here!