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It's Ok To Not Be Ok With Imani Lewars

a year ago

Dizzy spells and ringing ears? It may just be a bad hangover or something you ate.. or not. How long do you want to wait to find out? Today, Imani Lewars shares her inspiring journey of fighting through Ménière's disease from the early stages of misunderstanding the symptoms and different diagnoses, self-isolation, to finding people who understand and finding comfort and strength in her faith. After all, God will never give you more than you can handle.


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It's Ok To Not Be Ok With Imani Lewars

A Healing Journey

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Welcome everyone to the show. Time and episodes are flying. Thank you everyone for reading. You guys are the best. Be sure to smack that subscribe button, leave us a review, and share your favorite episodes. This episode is with one of my favorite patients, Imani. She is an absolute warrior. She came in with a lot of neurological symptoms. Some things have gotten much better and other things have stayed the same.

She keeps her faith. She never loses hope. She's always looking for an answer and solutions to her health problems. She never gives up. She's such a breath of fresh air to be around. She's so strong. I'm so proud to call her my patient and friend. This was such a great episode. A lot of people will get a lot out of it that are searching for answers to their own health.

As we know, sometimes, the journey back to health is not linear. Sometimes it's up, down, and around and you have to keep searching and keep knocking on doors. That's what she. I'm so excited for this episode. You guys are going to love it, and I hope you enjoyed this episode as much as I did. Please welcome, Imani Lewars.


We have a very special guest. One of my patients, Imani Lewars, has been with me for years now. She has an amazing health journey that she's still going through. She's one of the strongest people I know. She's a warrior and doing everything possible to get her health back to where she wants it to be. She never quits and she's an inspiration to me. I'm happy that she came into our practice years ago. Without further ado, I would like to introduce you to Imani. How are you?

I was thinking, as you were saying that, you should have said my favorite patient, but it's okay.

I forgot the most important thing. My favorite patient, Imani Lewars, where are you from originally?

I am Jamaican. My family is full Jamaican. I was born in Jamaica. I came here when I was 1 or 2. I'm a Jersey native too.

You came right from Jamaica. Your family came to Jamaica to New Jersey.

I'm Jamaican-Jerseyian or Jamerican because I have been here my whole life.

Is there a big Jamaican culture in New Jersey?

I spent a lot of my summers when I was younger going to Jamaica. My family was in New York and stuff. Where I am in Jersey, not necessarily.

You spent a lot of your summers in Jamaica going back.

Yeah. I went there every summer until I was a teenager when you start wanting to do your own thing. I'm hoping to go soon. Jamaica is still a very close part of me as who I am, but I'm also a Jersey native.

What were you into growing up as a kid?

Probably talking too much. That was a big thing for me. I loved food. I still love food now. I used to eat anything and everything. I have six brothers and I have a little sister, but I'm my mom's only child. I grew up as an only child with my brothers. I always wanted to be around people because I have my family. I had my brothers around me. I had my mom, my aunts, and my cousins. As a kid, I love being around people.

I met you a few years ago now. I remember you came in originally with ear ringing tinnitus and a couple of other issues. When did you start noticing it acting up and some of your symptoms coming up and what made you seek cervical care?

In my last year of grad school in 2016, I would have random ringing in my ears, and my roommate was studying. I don't even know the term, but she was in Doctorate. She was getting into med school to study the ears. She kept saying, “Come get it checked out,” but I would never get it checked out because my ear would ring maybe for twenty seconds, and then it would completely stop and it would not happen again. It wasn't often.

I would notice little things like that. I have noticed if I drank maybe two drinks, I would wake up so hungover the next day. It didn't make sense, and then sometimes I would drink and then at the moment, I don't feel like I'm drinking, and then it wouldn't hit me until way after. It would stop and then I would be totally normal so I would never think of it. In 2017 summer, I went to Chicago to visit my best friend and I got a bad vertigo episode when I was in the mall. I had never experienced vertigo before. It was like a hangover. It was a random day walking through the mall and I got dizzy. I couldn't see anything. Everything was blurry and dizzy.

For how long?

It lasted for a minute or so. It was scary. We sat down in the mall and we were thinking like, “Maybe you ate something.” At that point, I didn't even drink. I was like, “Maybe I had low blood pressure.” It didn't happen again for a long time. I then would have random tinnitus and stuff. I went to the ENT. They did all these tests. Everything was coming back normal. In 2018, I went to Denver and got sick on that trip on the last night. When I came back the next day to my friend's party, I was drinking. Drinking and not feeling anything. The next day I had to go to the hospital because I was busy for hours.

I had a vertigo episode. My ear was ringing. It was like everything all out once for hours. My mom never experienced that. My friends and family, nobody knew what was going on. I went to the hospital and then they told me I had gotten a vertigo episode, and they said I need to go follow back up with my ENT to see what was going on. It's like slowly things are building. That last episode in January of 2018 was the most intense. Thank God it has not gone back to that point, but that's when it got the craziest.

What was it like trying to figure out what was going on? What was the ENT saying? Did you go to any neurologist or anything like that?

It was horrible. I have seen my mom get a little dizzy here or there, but nobody in my family. I have never heard about anybody having tinnitus. Even going to the ENT. I never had to go to the ENT up until this stuff started happening. The ENT that I had was great. He kept on saying he had gotten a second opinion from another ENT there and he doesn't think I have Meniere. He doesn't want to say I had Meniere’s because my hearing is so good, there's no damage and all these types of things, but it still kept getting worse.

I had another ENT tell me it was BPV. Everything is like Meniere’s and BPV, and all these other types of things I was going on. I did do another Meniere test. It showed some damage to my left ear. At this point too, I was only having tinnitus in my left ear. It wasn't both of my ears like it is now. They are testing all these things. After the second test, he did see a little bit of something but even then, he kept on saying like, “I don't think it’s Meniere’s. It doesn't match up with how Meniere’s usually presents itself for people.”

Not in a bad way, he's like, “It doesn't present the way that it usually presents,” and he's been a doctor for years. I went to PT because bouncing back from having that bad episode, it's disabling. I couldn't go to work because walking and stuff were like I'm off balance. Eating things was triggering me. They gave me Meniere’s diet. I'm low dairy, low sodium, and all these things help with the ears. Nothing fully stopping it. They are giving me Meclizine and stuff like that but not stopping it to help manage the symptoms.

Did those medications help at all?

No. I felt like they made everything worse, to be honest. I would be tired or I would feel the dizziness more to the point where I wanted to go to sleep. I took three of those pills because I didn't understand the point of it. Coming off of the pill, I felt even worse. I would stop taking it then I did PT and that helped, at least to get me back to being able to go to work. I walk through the hallways because I'm a counselor. I’m dealing with students with fast things and getting my body adjusted to my eye movements and things.

That helped but I started to plateau. This is within 2018 before I start to see you. I'm having tinnitus in both ears. I'm trying to manage all these things. My friends or family don't know about it because it's hard for me to talk about it. If I do talk about it, nobody knows because we have never experienced it. It hasn't been in our family or anything before, so trying to figure out all these things is hard. PT helped, but it plateaued.

I'm a believer. I'm going to church and I have had elders pray over me and things like that. I remember feeling defeated one night. I was laying down and I was like, “Dad, is this where my life is supposed to be? Is this what the rest of my life looks like? I'm managing it.” At that point, that's what everybody's saying too. You got to learn to live with this. You are going to have to learn to accept this, but I didn't want to accept it. I still don't want to accept it because it doesn't make sense. I was laying down and I had stopped looking up techniques and all these things.

I Googled randomly Meniere’s. I don’t even remember the word. Your name popped up and I went back to sleep. The next day at work, something in me told me to look at it again and I looked up your office and the type of stuff. I'm still discouraged at this point. I'm like, “I'm not going to do this.” I started looking it up because I'm like, “It's weird how it came to me.” My mom now, I'm always like, “God sent me to Dr. Kevin because I was literally done.” I didn't want to deal with anything. Even days later, I randomly typed in things. I forgot what I typed in just to see if your name would have been the first one to pop up on the search and it wasn't the first name that pop up on the search.

That's how I know this was sent from God for me to do that. I remember coming to you and meeting with my mom. She was hesitant of course because of how everything had been going, but then we started and things got better. I remember being able to eat my first meal and not getting a whole dizzy episode. I’m able to walk and not have to do my eye exercises from PT every day. Starting with you, I slowly started getting parts of my life back that I had lost over those last years.

I know we have made some strides of improvement with you. It's frustrating too because you want to get your entire life back and you are still suffering from some things. You've also tried a bunch of other different things. You've tried acupuncture and functional medicine or nutrition

It is natural medicine. This thing has been such a journey. I forget parts of it. Even in that first year, I lost 30 pounds. I was so skinny because I didn't even want to eat because if I would be eating things, everything would set me off. I'm a foodie. I love to cook and eat. I even wanted to go to culinary school at one point. It was a huge interruption in my life causing all these things. I did acupuncture before I even started coming to you but it had nothing to do with this stuff.

My mom still feels that's a part of this whole thing, but who knows. I try acupuncture with you and even I remember talking to you. You are like, “Just try it.” At first, it did help, but it wasn't until he tried to see what was going on with my jaw. That opened up Pandora's box to a whole another set of issues that we are trying to work out now. It has been a journey. It's weird because it's not like if somebody has chronic headaches. There are so many different things. I remember now the jaws unlock like having tingling in my hands and my feet.

My jaw shifts randomly. I had to get new retainers. It keeps spiraling to new things being unlocked. I went to do natural medicine to see if anything else was showing up, and then that show that I had been exposed to mold, which then was another blow to the face. It’s something else, and then I had to take those pills. Even that process has been intense because it has been hard for me to consistently take the pills because I do feel reactions from them. Even that, it's constantly flowing which is not a good flow. It’s like a roller coaster of things.

Where's your mindset out right now after trying so many different things? Some things getting better. Some things stay the same. How do you stay on this roller coaster you are on now?

It's tough. Honestly, God has been a huge part of that for me and my community. Being able to cling to the Bible, having friends that pray for me when I cannot pray for myself and I don't have anything left in me to give, and gratitude. I remember the 2020 shutdown, my friend had given me a book on gratitude and she has a series. One of her books is called The Secret and the other one is called The Magic. It was The Magic that I read.

It was 30 or 40 days of something different that you do each day and each thing reminds you to be thankful. Whether you are being thankful for the water running in your sink or your organs and the blood in your body. I did that every day, and then after I finished reading the book, I read it again. After that, I started writing down ten things I was grateful for every single day. I did that from 2020, but I decided to chill out a little bit.

I did that every day because I needed to remind myself what I was thankful for like what God has given me or what's coming. Life keeps coming. At 25 or 26, I wouldn't be looking at myself now like this is where I'm at, but this is where I am. God, community, gratitude, my therapist, and your hugs. Having a doctor like you that cares about me.

We have had conversations where you have seen me break down. For me, that's always so important. Of all the doctors I have had in my entire life, being able to have you see me like that, hug me, talk to me, and say, “It's going to be okay. We are going to figure this out.” Even you persistently push me or say, “Maybe we need to take a break or maybe we need to do whatever.”

Being honest with me has been so important. That goes back to God for me because he's placed all these things in my life to keep me going because it has been rough. I have had suicidal thoughts. I have had thoughts of self-harm. Sometimes those things made you think like, “If I was to do this life would be easier. If I was to leave things would be easier,” but that's not true. Having community and these things have helped a lot.

One of the most difficult parts about everything you or people go through with the Meniere’s, tinnitus, and dizziness is an invisible injury. If you look at yourself or if someone is looking at you, you look perfectly healthy and young but on the inside, you feel like you are dying. There are a lot of unexplainable things going on inside and people can't see that.

It's like what you were saying before. Trying to express that to people, whether it's family or friends, it's not a thing 98% of people have ever experienced, and when you start talking about it, it sounds crazy. People want to help and they asked like, “What do you want me to do?” You don't even know how to help yourself at some time so it's like, “I don't know.” Sometimes you need people to be there for you to get you through it.

Even as you say now. That's why you are one of the people that's helped me so much because you understand. That's one of the reasons that resonated with me when I first started seeing you because you told me what brought you to do this work and how your life was impacted. I was like, “He knows what it feels like. That's what I need,” because it's true. I will be here out and I look fine. Even now, my hands are tingly as I'm talking to you. My jaw is weird, but I have learned to power through it because once you spiral down that well with me, it's a snowball. I'm not going to sit here like I'm perfect. There are moments when I break down sometimes several times a day, but I have to keep bouncing back.

It's tough. I remember first when everything happened, I lost friends that I thought were my best friends. It’s like, “We are not going out to the bar and drinking. We are not doing these things. I don't have to wear earplugs. Maybe they are embarrassed. They might not want me around to wear my earplugs.” That's hard. Imagine, you are dealing with all these symptoms, then you are losing friend groups that you thought were going to be there forever. Part of that is because of the illness, but the other part is me too. I'm taking accountability. I don’t how to talk about it to them or what to say. They didn't fully know what I was going through. That's the hard part too, managing on top of how the symptoms make you feel. Sometimes you feel crappy and you snap at people for no reason.

Even though you don't want to sleep, you want to sleep. There are all these things hitting you at once that it's overwhelming. The support system that I have had, I'm so grateful for it because even sometimes I'm like, “I have no support system.” That's what goes with me. I have them and they have shown me at times when I don't expect anybody to show up for me. They have shown up and I'm so thankful for that. Especially in 2021, my church community has transformed and that has helped me so much having people to pray for you. That power of having somebody pray over you lifts you so much. The community has been so important and that's what honestly helps to keep me going now.

I remember when I was going through all my stuff like in the height of it when it was at its worst. Have you ever heard of a guy named Joel Osteen?

I shouldn’t laugh. I'm sorry.

That's the reaction you get from everybody. Somebody gave me one of his books. I knew exactly who he was, and I was like, “I don't want to listen to this guy. I don't need to read this guy's book,” but I opened the book and started skimming through the pages because I was like, “What else do I have to lose?” The only thing I took from that book that made me hold on for years was this one quote. It said, “Tide always comes back.” No matter what you are going through, there's a yin and yang to everything. The tide goes out, it's got to come back at some point. That one quote made me hold on for dear life because it made sense to me.

“I was like, “Something's got to give eventually.” I hung on for years after that and I will never forget that quote, it's engraved in my brain. I put it on a wall. I put up a bunch of quotes all over my room. Anything to get a visual to trick my brain to be like, “We are not getting defeated here. We are going to get through this.

There are little moments like that and I'm sure there are little moments, little books, or people, that when you are having the lowest of low moments, there is God, people, and things that bring you to moments that you are like, “Even though I'm not feeling my best, there are some beauty and light where it's complete darkness.”

When you do come out the other side, it's the most beautiful thing in the world because living without those symptoms makes life so much more beautiful. When you do get through the other side, I don't know how and when, but I know you will. It's going to be a very beautiful life. You are going to be so happy and thankful that you did go through this because it makes life that much more beautiful out on the other end.

I stand in agreement with that. All over my room, I have sticky notes with Bible verses and quotes. All these things help because it's true. I'm in a group and we are reading a book. It's called Crazy Faith. The pastor is Mike Todd. Every week we are talking about another chapter and something in the chapter that stood out to me was about sharing your testimony and talking to people. It talks story short from the parable that this guy is paralyzed. His friends take him to Jesus to heal him, and his friends literally are the reason he gets healed. They dropped them down the roof and Jesus heals him.

He comes in on this mat and Jesus says, “Pick up your mat and go.” In the part of the book, he's like, “What's your mat that you are going to pick up? Bring it to people and say what God has done in your life and show your testimony.” That could have easily been a go. He told him to take the mat as a reminder of what he's gone through.

I was emotional reading it because I'm like, “The week that I'm talking to Dr. Kevin, you are telling me to pick up my mat.” This is my mat, and that's what pushed me to do this. Remember when we first started, I was so excited about your show and then I kept getting discouraged. I don't want to talk to anybody yet until I'm better. The reality is I have been getting better and it's been up and down.

Sometimes it's super down, but there are so many testimonies out there with people who are better or still going through it like me. You feel discouraged and isolated, and it's so easy to isolate. I still struggle with isolation, but that's what made me say, “I need to talk to Dr. Kevin. I want to reach out about the show because people need to know that it's okay that you are not okay. That's a part of the process and you will get through it.” That's all I want to talk to you about because people need to know. It's okay that you are not miraculously healed yet, but you'll get there. That's what I'm holding onto with myself and people like you are helping me to remember that all the time.

It's a powerful testimony. There are so many people that are going through what you are going through. I know at a point, it feels like you are all alone. You are by yourself and nobody can relate, but there are thousands of people suffering from vertigo, Meniere symptoms, and tinnitus, and they are lost. If they hear a story like yours, that goes such a long way because they finally have somebody that they can connect with.

I thought I was the only person in the world that was going through Post-Concussion Syndrome because I stopped googling everything. It was the scariest thing ever. When you Google your symptoms, the worst-case scenario pops up so I stopped doing that. I thought I was the only person in the world with this. Even my friends that have concussions, they would get better, and I'm like, “I'm not getting better. There's got to be something wrong with me.” If I heard anything like this, even if I heard your story when I was going through this, it would save me so much time and energy. It would restore my faith in a lot of things because there are so many people that think they are going through this all alone. When in reality, there are so many people that are out there suffering from the same things that can relate and can help.

I remember years ago, I was talking to you about support groups or something. It’s because you do feel alone and you don't feel talking to people around you about it. Not because they don't love you because they do. Not that they don't care. They do, but you want to talk to somebody that understands it because it is so isolating.

I remember the Meniere’s packet that they gave me when it first started. It was like, “Don't be alone.” I remember throwing it because I want to be alone, and it was hard. This jaw stuff is now added to it. You know how much that's been stressing me out. That's a whole other layer, but you can't isolate and you have to find outlets to talk about it or at least lean on somebody.

If it's a hug to know that you are going to be okay, it's so important. Isolating literally is going to make everything that much worse. When you are alone, that's when the enemy comes in. That's something we talk about in church. He knows you are alone. This is one that counts. You can't be alone. You have to have that armor on to be ready to retaliate because you are not alone, and there are people with you.

At the end of all my episodes, I like to ask all my guests, what is one piece of advice that has resonated with you over the years that you would like to gift the audience. It could be absolutely anything.

I knew you were going to ask this question and I was trying to practice my answer. My piece of advice would be to remember that it sucks and it's going to suck. To pull on the beautiful things and the moments, even if it's something that happens in two seconds to hold onto each day and remember that. That can make the difference between you getting through the day or you being down.

Hold on to something little or small each day as a reminder that you are getting through it, regardless of your faith. I talk about God. That's for me. That gets me through it and your community. Don't isolate yourself. Remember that even though you feel alone, you are not alone. Don't punish your friends and family for that because they don't understand.

One of my biggest takeaways from this episode is something you said, “It's okay to not be okay for certain periods of time.” A lot of us strive for perfection. We beat ourselves up when we are not okay. We talk down to ourselves. We get frustrated and it's okay to take a step back and realize it's okay to not be okay and get through it because you will be one day. I appreciate you saying that. That was a gem I'm taking with me.

I say that to myself every day. Every night before I go to sleep, I'm like, “I'm alive. I made it through the day.” That's something that I hold on to. Some days my symptoms get so bad that I'm like, “How am I going to get through this?” I even thought about calling you on Tuesday because I was like, “Do I need to go back?” I felt so off on Tuesday, but I was like, “Let me hold out,” and here I am. It was holding onto each moment that you get through it because that's something to be thankful for.

If somebody read this episode and wants to reach out, maybe they are going through the same thing, where can people find you and reach out to you?

They can reach out. Should I give my Gmail? Do I do that?

Don't give phone numbers. Give a Gmail, maybe an Instagram or something.

Instagram is perfect. That's a great idea. They can follow me on Instagram @ClickDuh. I would love for us to connect that way. I'm here to talk to people and listen. Even if I'm not going through all of your symptoms, I'm here because I have been through so many at this point. Thank you so much for coming to the show. We will have you back when you are 100% ready to go. This was to get you on to share your original story and then we are going to get the other part later. You are coming back on soon enough. Thank you so much for sharing your story, putting all the cards out on the table, being vulnerable, and sharing everything. I love when people do that.

Thank you for having me and being patient with me because I stress out and I cry. I appreciate you for letting me cry and be who I am. I didn't cry not one time this episode.

No, you didn't. It was good. It was a great episode. I loved it, and I'm excited for this to come out.

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