Savannah in the hospital

It’s Not In My Head

Why it took 12 years for Savannah to get a diagnosis

Savannah Hunt knew at a young age that there was something wrong with her health. The problem was that the doctors could not pinpoint an accurate diagnosis. For 12 years, she was in and out of doctors’ offices, labs, imaging studies, and hospitals without ever receiving a diagnosis. She began to think her ailments were normal. That is until a night last year when her kidneys started to fail. 12 years after first being seen for her condition, she learned she had lupus and lupus nephritis. Tara Tingey sat down to interview Savannah about her chronic illness journey. Read the interview below. You can also watch it on YouTube or listen in on your favorite podcast channels.

[00:00:00] Tara: Hi, welcome to Situation Positive, a positive community for those affected by chronic illness. I’m Tara, your positivity partner, and I’m really excited to jump into our interview today, today with Savannah hunt and Savannah, how are you?

[00:00:18] Savannah: Good! Hi!

[00:00:20] Tara: We are so glad that you’re here with us. I know a little bit about you just from what you’ve been posting on social media, but why don’t you go ahead and introduce yourself.

[00:00:29] Savannah: Yeah, my name is Savannah Hunt. I live in Arizona, San Tan Valley area. I am 23 years old. I’m married. I have three kids. I have a toddler who’s three, and I had had a set of twins for one. So it’s definitely busy. There’s never a dull moment. They’re always running around and into everything. So, yeah. So that’s who I am.

That’s where I live right now. I have, I just got diagnosed with lupus last was it last week? A couple of weeks ago. I just barely found out that I’ve been living with lupus all these years and I have lupus nephritis.

[00:01:06] Tara: So you just found this out. So. So to kind of bring us through your story from kind of when you started up until just a few weeks ago when you got your diagnosis.

[00:01:16] Savannah: Yeah. So it’s a long story. I’ll try to keep it as brief as I can without missing the important details. But, so I started having problems at 11 years old, there was a night where I was playing basketball at church, just with a ton of other young girls. And that night I came home, not feeling well. So I went to bed and I was like, Hey, this is weird.

I don’t really feel good in the middle of the night. Like I got this really high fever and my neck was stiff and I had all this joint pain and all my joints started swelling. And I was like, this is, so this is so weird. So my dad took me to the emergency room and they ran all this blood work. We were there till like five in the morning and they were like, oh, we’ll just send you to your family doctor.

And I was like, okay, sure, whatever. We go to my family doctor and he’s like, oh, I’ve seen this before you have septic arthritis. And we were like, okay. So he put me on all of these antibiotics. So I was on these shots. Morning and night they gave me shots every day on my bum. So I’d go into the doctor’s office twice a day as a young teenager.

So I was 11, 12, 13 when this was all happening around those years. And I would get shots on my booty every day because they thought I had septic arthritis. So I was on this really high dose of antibiotics. So anytime I was on antibiotics, I felt fine, but the minute he took me off the antibiotics, all my swelling came back.

All my joint pain came back. I wasn’t sleeping very well at night. I had all this anxiety because I wasn’t sleeping and I was like, what’s going on? So that kind of happened when I was younger. And then at 14, 15, we were like, okay. Every time we’re done with the antibiotics, it comes back and it’s not going away.

There’s nothing we can do. I saw at that time specialists, but they were like, oh, like there’s obviously some type of virus, but we don’t know what it is. And so then I have the opportunity to go to the Mayo clinic up in was it Minnesota? Yeah, it was Minnesota and I stayed there a week with my dad. They ran all kinds of tests.

I saw a rheumatologist who was a lupus doctor. I saw a rheumatologist, arthritis doctors. I did MRIs. I did ultrasounds. I did every type of blood work. They couldn’t find anything. There were like, oh, well you’re 15 years old, whatever it is, it either just like went away or it’ll manifest its manifest itself later on throughout your life.

And we were like, okay, whatever. So I got home from the Mayo clinic and life kind of continued. I went back to high school and I, I had daily headaches since I was 11. So I thought, oh, everybody has headaches. This is just how it is. I was always nauseous. I was just like, oh, And everyone’s nauseous. This is just how it is.

Savannah in the hospital
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Like, that was just my normal. I always had joint pain. I always was nauseous. I always have had headaches. Sometimes I would have flare ups and my joints would swell, but that was only if I like went to Disneyland and walked all day or if I did something crazy, then my joints would just flare up now, looking back,

I know why, but. This is high school. I was 17. I had broken bone tissue and my ankles just randomly that they happened to find. So I got surgery on my ankles, which was totally unrelated to all of this. And then 17 I was fine. Turned 18. I was fine when I say fine, meaning I was just daily having headaches, but nothing too crazy.

So I went to college at 18. That’s where I met my husband. We dated. We ended up getting married. And during that time, just a healthy college student, just living with my normal everyday nausea, normal, everyday migraines, normal, everyday cramping, just things I thought I’m a girl and we have periods and stuff.

This is, I guess, normal. Cause that’s what everybody was telling me. They would just say, oh, drink more water. Oh, you’re not eating enough. Oh, you need to go gluten-free dairy-free oh, this and this. And this is normal and that’s normal. So I was like, Okay. I guess this is normal. Okay. So then we got married a couple years later.

We had our first baby, that pregnancy was terrible. I was so sick and I was like, okay, this is normal. People get sick. I had my baby afterwards, everything kind of just continued on with life. I had the same thing, headaches every day, joint, knee, but nothing too crazy. Then I got pregnant two years later, after that with twins and that pregnancy, I was even more sick and my feet were swelling.

My ankles were swelling. I was constantly throwing up. I couldn’t keep anything down. It was just such a hard pregnancy on my body. And so the twins were born and my body was never the same, again. I started, I had like episodes where I would pass out and the paramedics would come and I would be dehydrated or I couldn’t move my body.

And I was so dehydrated to the point to where I couldn’t like, I was completely paralyzed. I could not move or anything. I was low potassium, low magnesium. Each day I was dizzy each day. I was lightheaded each day. I. Had a ton of joint pain and nauseous. I was nausea, nauseous, and all of that.

And so fast forward there a year and a half right now, but when they were about a year old, so only six months ago, I was like, oh, This is not normal people say, oh yeah, I cramped too after babies. Oh yeah. Like your periods get worse after baby’s like, oh yeah, just drink more water. And you’re fine. But I don’t think people realize like how much pain I was in.

And I don’t think I even realized how much pain I was in because it was so normal to me. And so finally, like six months ago, I was like, I’ve had enough. Like we need to come to the bottom of this. I’ve had issues since I was a kid, this has to be related. And so I started doing my research. I went and saw a family doctor and he was like, oh, well you just have like low magnesium, low potassium.

That’s why you were in the ER, you were just dehydrated. You’re fine. And so he’s like, just drink more water. I’m like, okay, whatever. And he’s like, well, okay, we can run everything. Let’s just run all kinds of tests. I’m gonna check your thyroid, your kidneys, everything. He was like, I think the very first person who checked my kidneys because people don’t just check your kidneys.

Like it’s not like a checkup. I don’t think I could be wrong, but to my knowledge. People don’t really just check your kidneys, your GFR count. That’s not something you just do, but he did. And he saw that it was at a 65. So the way the GFR works with your kidneys, anything over a 60 is considered normal and healthy.

Anything between. a 30 and a 60 is stage three of kidney disease. Anything below a 30 is stage four kidney disease. So this was back in August. He ran blood work and it showed that my kidneys artist’s 65 GFR. And he was like, this is weird. Hmm. Let’s do an ultrasound, did an ultrasound. And he’s like, oh, didn’t see anything move on.

It would just faulty blood work. And I was. I feel like something’s wrong. Like, I don’t think, I think something’s wrong with my kidneys. Like, I don’t think that’s just built faulty blood work. And so I transferred to a different doctor and I’m like, Hey, I’m going to go to a different family doctor at a different location.

Start completely from scratch. Tell them my story from the time when I was a kid. And see if he’s going to run anything, like basically ask him to do another ultrasound to do more tests. So. What fast forward saw this new family doctor who was not even a doc, he’s a PA, which is I like PAs personally better.

I feel like they have more time to listen to you. So he was like, oh yeah, that’s not normal. That’s weird. This is weird. Huh? Okay. You’re only 23. That’s weird. And I’m like, yeah. Yeah. See. And so he’s like, Let’s one more test. Let’s run everything. Let’s rerun, everything. Let’s order another ultrasound. Let’s send you to a neurologist to check your check your brain, make sure nothing’s going on.

And we’ll go from there. My kidney test came back. It was like the day before Thanksgiving, I remember the phone call and the kidney test came back and they called me and they said, your GFR jumped down to 42. Like something’s wrong with your kidney. And I was like what the heck? My kidneys thinking of my mind. Okay.

Worst case scenario I’ll need a transplant, I’ll still be alive. Right? Like I’m just, I started panicking my head, getting all this anxiety, you know, like what the heck is going on. So this is back in November. Let’s see where it was I to do. And then after that, my family doctor calls me and he said, Your kidney count is low.

I’m sending you to a urologist because this is not my expertise. You’re going to a neurologist now for your brain stuff to check your brain from all the passing out, or I didn’t pass it that much, but from those episodes, I had all the dizziness, all the light headedness, checking your brain. And then I’m gonna also send you to a urologist to check your kidneys, make appointments, fast forward a thousand appointments later.

We’re in December. December now rolls around. I see a urologist and the urologist is awesome. He’s like, I don’t know why you’re seeing me though. I don’t really like specialize in kidneys and he’s like, oh yeah, your kidney doesn’t look good. I’m going to send you to somebody who I personally know who I would trust my own wife and kids with.

Is this nephrologist. So. We made an appointment with this specific nephrologist and went and saw him. And he was like, oh, this was before Christmas. And he was like, Hmm, your GFR is a 42. That’s really weird. Tell me about everything. So I told him the whole story. I just told you about growing up and this and this and this.

And he’s like, have you ever seen a lupus doctor, a rheumatologist? And I was. Yes, but every time I do see a rheumatologist, they look at me and they say, oh, you look healthy. You’re fine. And then they dismiss me and it’s a dead end. I’ve seen probably four different rheumatologists and they say, you don’t have any butterfly rashes.

You don’t have any rashes. You look fine. And they won’t run anything. Yes. It is hard to diagnose lupus, but you have to have like eight out of, yeah. You have to have like eight out of 12 markers to be able to mark it and blood work. You have to look for the right thing. But the rheumatologist never gave any time of day because I quote, looked healthy.

So I told my nephrologist that I said, yeah, I’ve seen rheumatologists. They always say, oh, you look healthy. You’re fine. And so I told him that and he’s like, that’s weird. So he’s like, it could, he said, I’m not telling you it is this because I honestly don’t know yet. But he said it could be lupus nephritis.

Like that would be the only thing that makes sense. You’re 23. You’re in my office. Your GFR. 42. You’ve had all of these issues that are lupus, like symptoms. And I was like, oh, okay. Like, whatever, not whatever, obviously it was like panicking the whole time, but so going through all that, he said, okay, let’s do blood work.

And then I’m 90% sure. We’ll have to do a biopsy to figure out what it is, but let’s do all the blood work first. And I’m like, okay. And he’s like, okay, I’ll see you. End of January. But my GFR is going to get lower. He’s like, no, it takes years and years and years, kidneys, kidneys, like are slow progressing organs.

So it takes years for things to drop. So I’m like, okay, so then fast forward a week later, right before Christmas. I’m getting my hair done at my friend’s house. And I instantly start feeling like light headed and I’m catching myself from like passing out. Like I’m like almost passed out and then I have to like keep myself awake.

And that happens like 13 times. And I like tell my friend, I’m like, Hey, you need to take me home. I need to go to the ER, So she hurries and washes my hair and luckily we finished the foil. So that was exciting. I was like, I don’t want to be in the emergency room with a half brown hair, half blonde hair things you think about in the moment.

So my hair is all wet. She pins it up. She drops me off at home. I told my husband, I’m like, we need to go to the emergency room again. Like I’m going to pass out. And like also I was like having anxiety cause I’m like, I just feel terrible. I need to figure this out. Something is going on. I don’t know. So we ended up in the emergency room that night we waited 10 hours, 10 hours.

It was terrible. So my husband was trying to keep me awake and emergency room the whole time. This is the first time I’m telling the story. So that’s good for me to like talk about it more. Cause the easier it will be to talk about it. The easier it will be the more I talk about it, but anyways, So we’re in the emergency room.

Finally get to my room. He runs a CT scan on my head and he’s like, Hey, no tumors, nothing crazy huge. So worried I had a brain tumor and then he ran other blood work and. He was like, you’re dehydrated, you got bags of fluid, got home. The next day I called my kidney doctor and I said, Hey, just so you know, I was in the ER last night, he was like, okay.

Like okay. But then that night I had the feeling like you need to see your nephrologists earlier. You cannot wait till the end of January. You don’t have till the end of June, January. And I was like, I want to but my GFR was in the emergency room. So I looked on my Sonora quest app or my like app with all my records on it.

And my GFR had jumped down to a 30. And I instantly started panicking. I was like, I am one point away from stage four kidney disease. And if we don’t get on this, I’m going to be on dialysis. And then I have to be on transplant lists and this is going down so fast and I don’t want to do so. My husband, you know, That night.

Savannah in the hospital
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He was like, Hey, the doctors are really wouldn’t have, let us go. If you were kind of like dying, like they’re not going to just release you from the emergency room if you were gonna like die. So I keep telling myself, you gotta trust the system. I got to trust the system. I got to trust the doctors. Fell asleep that night, somehow woke up in the morning and the nephrologist calls me and he’s like, I just reviewed your blood work.

Your GFR is now at a 30. If you’re at a 15, you need dialysis. I’m going out of town tomorrow. I want to see you today, come into my office today. And so I went and saw him that day and he meets with us and he’s like, yeah, Is it happening fast, something was going on fast. He said, I’m skipping all the blood work.

I’m ordering you a biopsy today. We need to get this started today. So the front office ladies faxed it all that day. A miracle here. It takes a week. To two weeks for it to even be approved by insurance and to get it faxed. But the very next day, everything was set in stone for a biopsy for a week later.

So the process was so fast a week later, right after Christmas, I got a kidney biopsy, which by the way, you’re supposed to be asleep for those. And I was awake for the whole procedure. They go in your back with these long needles and like they’re guided by an ultrasound. And I was, I forgot what the drug is called.

Like Twilight drug. They’re like, oh, you’ll feel like you’re dreaming. Like, it’ll be like a step under anesthesia. The whole time I was awake and I was. How are you guys doing okay? Is my hair the way, just move it out of the way. And they were like, put your head down, put your head down. And I felt everything anyways, that was not a fun experience, but so that was the kidney biopsy.

Then after the kidney biopsy, we were waiting and waiting for results because we’re like, Hey, we’re 90% sure. This will tell us what’s going on. Like it has to beginning of January. So just this month on our five-year anniversary, January 5th. The doctor called us, said he had our results. We had an appointment with him.

We walked in, I sat down, he walks in and he says, Savannah, it is what I was afraid. It was it’s lupus nephritis. And I was like, what so crazy. And so he instantly just started talking, like telling me everything. And in this moment I’m like trying to like. Sink it all in. And he’s like, apparently you’ve been living with lupus all of these years, that explains growing up, like what was going on?

He said it now has gotten into your kidneys and your kidneys are attacking itself. So now what we need to do is we need to send you to the hospital and we need to put you on steroids. We need to put you on chemotherapy to try to pause the kidney, count the GFR and With treatment for like three months, then you’re on an ongoing medication.

And he was telling me the side effects of the chemotherapy. It’s like a high chance of infertility. And I was like, I wanted one more baby. And so I was obviously sad about that. And I went through that whole process of being sad about it, but I’m grateful that I had three. Anyways, so yes, January 5th was just when I barely got diagnosed with lupus.

And lupus nephritis where it was that I think my GFR is like 38 right now. So yeah. Anyways, if you want me to like, keep going or ask questions before I continue.

[00:19:18] Tara: Yeah. But girl you’ve been through it. Oh my goodness.

[00:19:22] Savannah: Gosh, it’s a story.

[00:19:24] Tara: 12 years now? That’s horrible. What, what was the feeling like when you finally got that diagnosis after 12 years?

[00:19:33] Savannah: It was, it was, it was a feeling of relief. Like, like I’m so glad that I have an answer, but it was a feeling of almost anger with like past doctors, people who didn’t like people who pushed me to the side and like, Totally brushed me off. It was more just anger. I had a lot of anger of, are you serious?

I spent so much time at doctor’s office. I see. I’ve seen so many doctors I’ve done so much blood work. I’ve seen four or five rheumatologists. Like you couldn’t have prevented all of this kidney stuff. It was like a lot of anger, but it was also relief. It was mixed with so many emotions. It was like a oh good.

Like, I’m glad it’s not like a brain tumor or something like that, where they’re saying you have tomorrow to live or stage whatever of cancer where they say you have tomorrow. So like, it was a relief that even the lupus nephritis is not ideal. And it’s, you know, it’s a kidney disease. It’s serious. It was more just kind of relief that I wasn’t going to die tomorrow.

[00:20:35] Tara: Right. If that bittersweet where you finally have answers, but it’s not exactly the answer that you maybe wanted.

[00:20:44] Savannah: Exactly.

[00:20:45] Tara: So, how did it feel when you finally found that doctor that, you know, finally believed you and kind of was able to give you exactly the treatment you need?

[00:20:53] Savannah: It, it felt so good. It’s hard to explain.

Like I tell my husband all the time, I’m like he is our angel. Like he is our saving grace. He listened to us. He didn’t have to, he didn’t have to order the biopsy that day. He could have went through the process. He said, usually, you know, you check it off with blood work first, and then you do the biopsy after everything is checked off.

But he saw that we didn’t have that much time. And he did his a job above and beyond. He just happened to review my files, like on his own time and saw that I needed him and he listened to me and he heard me, he could have totally brushed me off the first visit and said, you’re 23. Why are you in my office?

He could have very well said. Totally brushed me off. Like all the other doctors, he was the only doctor who would listened. And so the fact that I have in my, in my life is gold. Like, I feel like I owe him everything.

[00:21:49] Tara: Absolutely. That’s always great to find those doctors that, you know, they’re not going to stop until, you know, they help you as best they can.

Kind of jumping a little bit back to earlier on in your story, you had mentioned. You just thought your symptoms were normal for everyone. Yeah. At what point did you kind of realize like, this isn’t normal for everyone? What kind of talk me through what that was like, finding that out?

[00:22:13] Savannah: Yeah, it actually wasn’t I so the twins messed up, like my hormones, like crazy.

So I was actually seeing a homeopathic doctor to check my hormones and just kind of see what was off balance emotionally. And she was the one who was like, ’cause I went into my health history and she was the first person who told me that wasn’t normal. She goes, okay, well, we’ll wait, wait. She’s like, all of this you’re explaining to me, there is something there.

You need to run MRIs. You need to run ultrasounds. You need to demand blood work. She said, you need to find answers because this is not normal. That was back in October. And I like stepped back inside. After that visit afterwards, I hung up with her and I was like, oh, This isn’t normal. Everyone was brushing me off like, oh yeah, birth does that.

Oh yeah. Twins messed you up. Oh yeah. Like it was, it wasn’t until somebody told me that this was not normal. And even like, I knew I had health issues. I just thought that was my body though. Like my husband and I, we just were like, oh, I just have joint pain. It’s I don’t know. I’m fine. We just didn’t think too much about it until it got really bad and pushed me over the edge where I was like, okay, something.

[00:23:27] Tara: So, what was that like? Cause that’s almost like an invisible type of it’s know, internal pain. Like you don’t visibly look sick. Like the doctors were fine. What, what is that like kind of just living your day-to-day life, with invisible pain and you know, talking to friends and family and whatnot?

[00:23:43] Savannah: Yeah. I, and when I did say things, obviously my family like believed me and stuff like that.

They were like, oh, sorry, you have a headache. And they were always good. And my husband obviously has always been good. It growing up, it was just, I dunno, with my friends and stuff, they were all like, oh, okay. I don’t think they really understood, but like after the twins were born was really when I was living in pain and really kind of when things escalated.

And like I was saying earlier, and with the daily migraines and with the daily struggles that I had, it was hard to get out of bed. It was hard to. Just exercise. It was hard to wake up early. I was in a grad program and running a business at the time and I had three new babies that were two and under, and my husband was doing pre-med stuff.

So I never saw him. So it was a time of craziness. And with my everyday pain that I thought was normal, it was the hardest year of my life. Joint pain, constantly migraines, constantly cramping constantly. And I felt like. Because people were telling me it was normal. I felt like I couldn’t, I couldn’t complain about it.

So I felt like I was living in, it felt like I was. Keeping so much hidden behind closed doors. Like I felt alone. I felt like I was suffering alone. I felt like nobody understood it was, it was, I was really fighting a silent battle that nobody knew about. Obviously people put on a face, like you could see me at church, you could see me, you know, post a picture of my kid and her birthday party.

And I looked fine and I look healthy, but people don’t really understand what is actually happening behind closed doors. So I think that was the hardest thing for me is I didn’t voice it, voice it to anybody. I just kept it to myself because I thought this is motherhood. It’s like, I guess people feel like this after babies.

And so. Kept it hidden and I really do too much about it, but yeah, I hated it. I hated that. I hated keeping it hidden and living with constant pain. I just finally said, I haven’t, I have enough of this. I’ve had enough. We need to figure this out.

[00:25:56] Tara: So has your diagnosis kind of changed the way you think about that? Is it easier to talk to people about it now? I mean, I know you’ve only just got it.

[00:26:03] Savannah: Yeah, absolutely. Well, I’ve learned so much, even the last three weeks of knowing like emotionally. Emotionally, physically, just everything I’ve learned so much in the last three weeks, but I, my diagnosis is getting easier to talk about when, if you asked me three weeks ago and I started talking about it, like I would get super stressed and like PTSD would come back and I could feel my body like getting lightheaded because it just made me nervous.

Cause it was new and scary and there’s so much happening and there’s so much unknown. But now that the diagnosis has settled in and I’m talking about it more and like, my anxiety is like, I’m okay with it all. Like now that everything is finally stable, I, I’m totally fine talking about it. And it’s getting easier every day.

And because now I have a diagnosis, I am finally able to get treatment. I, what that looks like right now is I’m on chemo every two weeks. And then I’m on steroid pills. At first, I stayed in the hospital for like three days and I did IV steroids, IV chemo. And then they sent me home. I’m on like 20 different medications.

And then I go back for chemo every two weeks. And then in like a couple months, I’ll be done with chemo, done with steroids and they’ll keep me on an ongoing pill. So I think now that I’m getting treatment, I’m just relieved. I’m like, yes. And as long as my body continues to respond to. I like without side effects and stuff and continues to respond, then it should be able to pause the kidney nephritis at a 38.

I’m at a 38 right now, GFR. It’ll be able to pause it for like 10 or 20 years before I would ever need a transplant. So yes, it’s getting easier to talk about and that’s easier and I’m rambling by now, but the hard part, I think. Is knowing that there is no cure. There’s no cure for lupus. There’s no cure for lupus nephritis.

I thought that was the hardest part to come to the grips, to like, it’s your, it’s your body attacking yourself? And there’s no way to reverse that completely. People just live with their lupus. They live with their lupus nephritis. You just try and manage it with medical treatment. And, you know, people do things like eating healthy and all that.

[00:28:30] Tara: So the lupus nephritis that’s specifically to the part of your kidneys, correct? Okay. Yeah. So, so some of our community members that are watching on our Situation Positive videos might also be in a similar situation to you where maybe the. I have waited a long time for a diagnosis. Maybe still don’t have a diagnosis.

What kind of like advice or what things would you say to someone in that situation?

[00:28:58] Savannah: I would say, do not give up on answers, do not give up on answers. The pain is not in your head. You’re not making it up. I felt crazy. Like I got to the point, especially remember this as a teenager where I left appointments and I was.

Is it in my head? Like they’re making me feel like it’s in my head. Like I was, I started to question myself and throughout my life, like I constantly was questioning myself with anything, with decisions I was making. The pain was in my head. If he’s migraines were actually like, I was constantly questioning myself.

And so when I started pushing for answers, I was, oh my gosh, there is something there. I told you, there’s something there’s, there’s something really bad there. And so it was more, just a huge learning experience for me that like, it’s not in your head. And so the advice that I give you is push for answers and I hope you get answers.

And I know you will get answers. If you just continue and continue and push and push. If you don’t like that, doctor you’re seeing, then don’t see him anymore. You can walk out of your appointment. If you want to do that, you can see different doctors. Do your research. You have to do your own research. You have to be an advocate for yourself.

You can’t just go to a doctor and say, all right, It doesn’t work like that. Unfortunately, the medical system does not work like that. You have to know how to maneuver your way through. You have to know how to be an advocate for yourself. You have to have questions ready at your appointments. You have to have up questions ready at your appointments.

You have to know what’s going on. You have to. You have to know what to ask. You have to be on top of the doctors because they’re trying to figure it out. Just like you’re trying to figure out. They’re doing the best they can do. So you are your best advocate for yourself. You have to push for answers.

You’re the only one who knows yourself to. A doctor can look at you and say, well, we just did an ultrasound. I don’t know why you’re having some pain. And you can say, I am having some pain. There is some pain there. Like I promise they’re there, but they’re seeing, well, I don’t know what to do. Cause we did an ultrasound.

There’s nothing else. And so that’s your chance to say this is here, there is pain, something is wrong, we need answers. And so I think just keep pushing for answers and being an advocate for yourself, doing your research. So you have the options out there. See the doctors out there, see who’s around you.

Google the best doctors, Google the best family doctors. There’s amazing doctors out there and they’re ready to listen. They’re ready to do their job. And there’s also bad doctors there and doctors who brush you to the side and brush you to this rug and see you. You’re just had twins and you’re fine. And just drink more water and take your prenatals.

There’s also those doctors. So trust your gut. Know. Know. You’re like, know. When you are in a situation that you need to get out of, if you’re with a doctor who is telling you something that doesn’t feel right. You have to go with your gut. You have to trust your gut. If anything, that’s what I learned. There were too many domino effects that if I did not trust my gut, those domino effects would not have happened.

One thing led to another thing led to another thing, led to another thing. And if I didn’t push for it and if I didn’t trust my gut, then none of that would’ve happened. So you really, especially with lupus, it’s, it’s so hard to diagnose. It’s hard to, it’s hard to find. So. You feel like something is just off with your body, just keep pushing for answers.

Keep seeing doctors until you get answers.

[00:32:36] Tara: Absolutely.

[00:32:36] Savannah: I’m very passionate about it.

[00:32:39] Tara: Great. Everything you said is so true and so important, and it’s good to, you know, bring that to the light and let people know, like, be your, be your own advocate. Like that’s so amazing. So. Bringing us all back home.

You’re your whole story. All 12 years. It’s it’s gotta have some dark times, some good times. So when that negativity creeps in, what do you do to combat that? How do you take your situation and turn it positive?

[00:33:05] Savannah: Oh man. That’s so it’s, I’ve learned so much about that. It’s so hard to, it’s so hard to do that because.

I could sit here and say, well, I have lupus nephritis. I’m 23 years old. I have three kids. And like, you know, poor me the stinks, which yeah, it stinks. And yeah, there are dark days, but I’ve been trying really hard. Like how can I turn this trial into a blessing? What can I do to make this hardship a blessing for myself?

And for my, for others. And so I’ve been trying really hard to start talking about it and telling other moms about my story and what has helped. And then conversations come up and people say, oh, I have this issue. I think I may have this issue. Or you got me to go see my doctor. You got me to go see this person.

I am trying to talk about it more and bring awareness to it so that people can be an advocate for themselves. I’m trying to look around and see all the blessings that have happened and all the docs, dots, connecting. I’m religious. So I am very grateful for a God who watches over me and I see all those dots that have connected and I’m grateful for that.

I try and. If anything like that is happening, if it’s a bad day, I just kind of take a step back and be like, all right, I’m grateful. I’m getting treatment. I’m grateful. I have answers even though it wasn’t the answer I expected. Like I’m grateful that I have answers. I’m grateful that I’m getting treatment.

I just try to like spin it back. Like, wait a second. Like, I’m not going to die tomorrow. Like we have met modern medicine. It’s such a blessing. I’ve been trying to also like, anytime I feel like stressed about it, or if there’s ever a moment where I feel it’s kind of funny. Like if someone takes, if someone tells me like just deep breaths, breathing in, breathing out, like the relaxation techniques, for some reason that triggers me, like my body.

Freaks out because instantly my body, like it’s like PTSD. It brings me back from the paramedics when they’re telling me to deep breathe. And it brings me back to so many dark moments in my life. So anytime it gets stressed out, deep breathing, doesn’t help me. I’m a very physical person. So what I do is if I ever get anxious at a doctor’s office, anything, I’ll just find something to look at.

And I’ll just describe that object in my head, just to bring me back to the present moment. So I’ll find like an outlet and be like, oh, It’s white, there’s four corners, blah, blah, blah, blah, blah. And like, that’s kinda like my zone, like mindfulness exercise that I do anytime I get stressed about anything with this.

But I think just recognizing when your body like. Recognizing what’s going on and trying to just find those solutions for you personally, like Kate listening to your body. Do I need water right now? Do I need to lay down right now? Do I need to turn on a movie for the kids so that I can. Sit on the couch, I think, especially like somebody with a chronic illness, just making sure you just really, really listened to your body each moment of every day.

And don’t push yourself too hard. Have grace.

[00:36:25] Tara: Yeah, those are all really good points. You, you said trial and a blessing. I love that. I feel like that’s something I would have saved on Pinterest. That’s a great, so, so moving forward where can people kind of follow your story or learn more about.

[00:36:40] Savannah: Yeah.

I just started an Instagram blog and I think I’ll open up a web website eventually just to kind of blog, but it’s called itssavshouse. So I kind of figured I’m like, I love my degree is in family and human development. I’m in grad school right now. And I work a lot with like families and individuals, and I do a ton of research on.

And I also am interested in health because of my health journey. And so I wanted to combine it something that’s in my house, what’s in my house. Well, we talked, it’s a lot of health. It’s a lot of food. It’s a lot of salads. It’s a lot of recipes. It’s a lot of relationship advice. That’s so I created itssavshouse and that’s what, that’s what it’s going to be.

[00:37:22] Tara: That’s awesome! I love that! That thing, your stories too, they’re always something different every day.

[00:37:29] Savannah: You never know what I’m posting.

[00:37:31] Tara: So glad to have you on our show today. And I loved hearing all about you and your story and your positivity. Well that is all we have for you guys today, but make sure you subscribe to our social media channels so you can stay informed and we’ll see you next time.

[00:37:47] Savannah: Thank you have a great day.

[00:37:49] Tara: Bye.

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