#46- Learning about my personal health journey and more on Lupus.

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Transcript

 Hello. Hello my friends. I am Jenny Lynn and this is my show. I am a wife and mom of two crazy kiddos. I have struggled many years with chronic illness and pain. I have a passion to find out as much as I can while navigating through life, not always feeling 100%. I have realized that having a positive mindset is a must in today's crazy world.

You deserve to live this life showing up as your best self, and I can help you get there. If you've been feeling lost after becoming a mom, you're not alone. I know that incredible woman is still in there just begging to be found. I am here to create a safe, non-judgmental space for like-minded women.

Let's empower each other. I am so happy you're here. Now let's jump into the 1 23 Mom Squad podcast with. Jenny Lynn.



Hello everyone. And welcome back to another episode of the 1, 2, 3 moms squad podcast. Today, you guys get just plain old, me little old, me sitting behind the microphone in my den. With my four dogs, hunter need my feet hoping that they won't bark at some point of this podcast, but today's show I wanted just to talk to you a little bit about my chronic illness journey and my history of really when I started having some symptoms and why I'm kind of here today and what led me to be here. 

So if you have been listening for a while, I know that I kind of drop some pieces of information about my life here. And they're into some of the episodes. And I believe my trailer, if you've listened to the trailer from the beginning, I described some of my early symptoms and everything like that. And I kind of tell you a little bit about what to expect from the podcast. 

But if you're here for the first time, I just wanted to let you know that, um, I am a chronic illness warrior, and I have considered myself this title. Because I'm here sharing my story in hopes that everybody else who is out there struggling feels like they can be seen and be heard from somebody who has been and is still. 

Um, having flare ups and can struggle from day to day, but I am just trying to create this community. Four. For us. And for those people that may have loved ones that struggle with a chronic illness or chronic pain. And just have a hard time finding support. From people who are just like them. When you don't struggle every day. 

When you don't have a chronic illness. It's very hard to actually physically understand what it is that the person who is struggling could be going through. And that is just like, If somebody. If I see somebody in a wheelchair that is wheelchair bound and dependent on that wheelchair for the rest of their life. 

I could never understand what it could feel like to wake up and go to bed and not stand up and use my legs anymore. No matter what it is that I say, I could say, I'm so sorry. You know, and sometimes the only thing people that have these disabilities or these illnesses or pain, or however you want to look at it. 

We just want to be treated. Normally we just want to be treated as a normal person. We don't want to be seen as an illness. We don't want to walk around with, like these said, post-its on our forehead that say, you know, I'm in pain today. Please feel sorry for me. I want sympathy. No, I don't want that kind of attention. 

I mean, maybe there are some people out there that, you know, do like that attention. But for the most, for the most part, most people just want to feel normal. They want to feel like they belong. That they don't want to be seen as these illnesses. Every time I see somebody it's like, oh, how you feeling today, Jen? How you, how you doing? You know? And it's like, they, they get that grief, pity sound in their voice. And it's, it's really kind of almost demeaning. Like I get that maybe they're concerned. 

Right. And they care. However. , I don't know. I guess it's kind of hard to explain, but. I don't necessarily want again, that kind of attention. I don't want people to feel sorry for me. I just, if somebody knows your story and somebody knows what you're going through. One time. That's all they need to know. , you don't need to be reminded of your illnesses every time you see somebody. So next time you see somebody that, you know, that struggles or somebody who has a disability. 

Maybe you just treat them like a normal person. You don't look at them like they're broken. You don't look at them like they're different. We just want to feel normal. We just want to be long. And now. That brings me to let me start with the beginning of my journey. I guess I could go really far back, but I'm not going to go that far back because this could get really long and this could get really boring. And I really don't feel like I really don't feel like putting you through all that. 

But other than being, you know, a crazy kid, I really did start my life out as a tomboy. I love to climb trees, which ended up. Um, me breaking my leg and starting kindergarten with a cast on my leg. That was so much fun. I remember sticking hangers down the hard cast to itch. Or a scratch my itch. 

Um, I split my chin open two years in a row. One, I fell off a light pole that I was dangling on. And then I, uh, was in an inside ice skating rink and Clearwater mall. And, um, during my Easter vacation, I fell on the ice and split my channel open again. In the same spot? None. No. Nonetheless. So I have a really nice. 

Lovely scar. Luckily you can't see it because it's under my chin. So other than that, my childhood was pretty, pretty normal.

I danced for as long as I could remember. Since I've been three, I had always danced. I loved music and putting on shows and plays and dancing in, or sh you know, Showing my mom different tricks and I was always moving, always dancing. And, um, you know, the tap jazz ballet acro, I did gymnastics. Um, 

It was just, it was just a part of my life. It kind of was who I am. It was Jenny, the dancer, you know, so. I got really serious into dancing when I was a teenager. But it took up a lot of my time, I went from school to dance, came home, did my homework, had dinner and went to bed. 

There were times when I couldn't really focus during school because I became so fatigued. From just not being able to rest my body and. Like with anything. You can burn yourself out. If you keep doing too much of the same thing over and over again, and your body is going to send you whispers. And if you don't listen to them, whispers, they're going to become screams. And apparently I was not listening to those whispers because when you're a teenager, you're, you're like, I'm invincible. 

Right? I can do anything. I'm a young kid. I, you know, I can. I can do whatever I want and feel good. Right. Well frog. So. I remember going on a cruise ship with my family. And I was, I think I was 15 years old. And the last day when you disembark the ship. Oh my gosh. This took hours. You guys, I hope that it's different now. 

Um, because we're going on a cruise in June, but you disembark the ship and they do like level by level. And it just, it just took hours. I remember sitting against the wall, just with my head down and it finally came time for our deck to disembark the ship. And I stood up and I collapsed. I couldn't, I couldn't stand up anymore. 

Um, my father ended up having to carry me off the ship. And I don't remember even, you know, getting home and everything. I just remember. Being so unbelievably exhausted. And fatigued that it actually just, it felt hard to blink. That is how fatigued I was. So. My mom makes me doctor's appointments. And, um, you know, I had some blood work done. I don't even know if I had scans. I just don't even remember. But I got diagnosed with model the Epstein-Barr virus, otherwise known as EBV. 

And little, did I know anything about model? They say it's a kissing disease, right? Well, I was obviously not kissing anybody on a cruise ship. I have no idea where it came from. I mean, it could have came from me drinking out of a simple water glass that maybe somebody else had that was infected. 

Um, I don't, I don't know. Um, So I, I was diagnosed with mano and unfortunately I had it, I had it really severely, so I had to be homeschooled. I was a sophomore in high school. And it was kind of nearing the end of the year. So I was in. I, it was near the end of the years. So when we, when it came time to take final exams, I could not, they would not allow me to go in. 

With the rest of the students to take the exam. So I had to wait till everybody was gone and I got to sit in the gymnasium. The hot gymnasium by myself to take these long exams. Which was not fun. I had it so bad that I had some, I had hepatitis, I just remember. Feeling like I was underwater being, trying to walk around with like cinder blocks, tied around my legs. 

It was not a good feeling. I really, really hope that anybody else that has had model.  Or anybody else that it has experienced this type of fatigue? Two. You know, really get yourself. I checked and to make sure that, you know, what's going on with your body. When you're doing too much, you need to listen to your body. It's, it's telling you things every single day, your body is smart. You guys, your body knows when you're T you know, when you're tired, when you're hungry, when you're thirsty, when you have to go to the bathroom, these are all little clues, right. 

That we know about our body. But what happens when you feel utter exhaustion, or you can't keep your head up, or you, you know, your joints feel a little achy. You just, you have to listen to that. That's your body saying, Hey, listen, something's going on? You got to listen to me. We need to either, you know, we need to drink some water. We have to have some salt. We need to just take a day to rest and literally do nothing. 

And we need some sleep. Maybe we need some sunshine, but you guys, it's so important to listen to these cues and to know your body. Once you start to really know your body. And become aware of the clues that it's giving you. You are so much more in tune as to what to do next. So I encourage you. If you can, if you are a person like me, who does struggle with many symptoms on a daily basis to start a symptom journal. 

And you just have to put, you know, put, just put the date or something and just go through your symptoms. And then maybe after you're feeling that symptom, did you eat something that may have made you flare like inflammation

? So. There's lots of different things. That can go into why it is that your body is having, you know, specific symptoms. 

So, let me just go past, so now I had, I had motto. Okay. So after I. After I was. Cured, I guess, cured with that. I went into remission. EBV never goes away. It just becomes dormant. Actually, most adults have the Epstein-Barr virus in their body. It's just, it just stays dormant until something happens and then it like fully kicks it. 

And then you're going to feel the wrath of the mama mama. Mano and everything else that goes with it. So I encourage you to take care of your body. Just take care of your body from head to toe. Okay. So after that, Back in. Back, I guess back in the days, right when I hit school, um, I live in Buffalo, so it's cold. 

Uh, we would snow shoe. And, um, I remember putting on snow shoes for gym. One year and I have little feet and all of the boots were really, really large. So I had to put on these boots and they were already wet from like the class before. So it was extremely uncomfortable. And not to mention they were large. So when I got out in the snow, the snow fell into my boots immediately. 

I don't know what happened. And I don't even know if this is, if this is the case or what caused it. But I I'm a bath lover and. Uh, you know, after this whole, um, season of snowshoeing, I would come home and I would tell my mom, like, I am just so cold. I can't warm my body up. I would be like freezing, shaking in the rest of the day in classes. And, um, 

I took a bath and I just remember sitting in the water. And screaming, literally screaming at the top of my lungs for my mom. I said, mom, come upstairs. I told her, I said, mom, my feet feel like somebody is stabbing my toes. Literally just taking knives and little needles and puncturing. If it hurts so bad, I didn't know what was going on. And this continued to happen, you know, for a couple months. And I realized that had happened every time when my, when I went from being the cold into warm. 

So we kind of thought that maybe. Maybe I got like a little case of frostbite from being out in the cold with these wet snow shoes. Um, so we went back to the doctors. I became like a frequent flyer at my doctor's like, okay, Jen, what's what's going on now. So there I was diagnosed with Raynaud's disease or Raynaud's phenomenon. 

So this is one your extremities, your hands. Your fingers, particularly maybe your nose, your toes can, they can go white turn purple. It's just a bad case of circulation. So I got diagnosed with Ray nuts, which made it really hard. On me. During Buffalo winters because they're long and they're cold. So I never. 

I never got into any like outdoor winter sports, like skiing, or I tried to do ice skating. I really loved ice skating, but I just, I just couldn't be out in the, I, you know, on the ice that long. So. So I tried to stay indoors, but, um, it's hard to do when you're a teenager and you're going in and out, but I did the best that I could. I survived. I got through these winners. They are there's. 

Um, still there. Uh, bothering me, there are some days that are. Worse than others, but I'm rarely barefoot. In that I'm like rarely barefoot in the house, even in the summertime when I'm wearing flip flops outside, I have socks that I come into when I get in the house because my feet will get cold immediately. Um, 

So that is something that my body just, you know, I have to do for my body because once my feet get cold and the rest of my body gets cold and then I stay cold for the rest of the day. And that's not good. Then that can run me down and then I can get sick. So that is something that I have learned to, you know, just deal with and it's okay. Because I I'm I'm okay with wearing socks. They're comfortable. They keep my feet warm and I like fuzzy socks. 

So. Now I've got Raynaud's and now I've got, I've gone through mano and there are days that are just hard on me as you're pushing through. You know, junior, senior year in high school, I had to quit dancing because I couldn't do it anymore. I couldn't, I couldn't go five days a week and dance, like I used to which ripped. 

Just rip my heart out. Um, And that is something that still to this day, I wish I could go back and somehow, you know, push through and do it because I really, really wanted to do. I really want it to dance. I that's just what I wanted to do. Um, And it was difficult to see my peers continue to dance and know that I couldn't, I went to some recitals or local competitions and I would actually just cry, um, to myself because I really, really want it to be on stage. So that was really hard. 

It was really hard to watch. But I, you know, It, it is what it is. And I had to just do what was best for my body. So I tried track and field. I really enjoyed running. I ran like in fifth and sixth grade fun fact about me. I broke a jump roping record when I was in Philly. It was fourth or fifth grade, a jump broken jump roping record. That is not easy to say. 

Um, yeah, so I was, I mean, I was, I was fast. I was, I was tiny. I just, I enjoyed moving men movement. So I decided to do tracking field and long distances were a little bit hard for me. That was, that was hard on my, on my knees. Um, so I stuck to the short distances, which was fun. Uh, for a couple of years that I did. And then senior year I went back to dancing because I, I just, I wanted to do it for one more year. 

I made it through one more year and, um, and then I was done and then I was done for good, but I'm, I am glad that I did it for one more year. So after the hat, um, came my, my wonderful encounter with kidney stones. I was driving to go see a friend. And I got a stabbing pain in my side, and I felt like I wanted to throw up like immediately. And so I pulled my car over because I definitely couldn't function. Pull my car over. 

I took out my, uh, my big cell phone at the time. And a call obviously told my friend that I can't make it. They met me where I was and drove my car home. And after that, I got to the emergency room where I was diagnosed with a kidney stone. It was lodged in my ureter. And at that point I needed a lithotripsy. So that is just a. 

Fancy term for lasers and you lay in a, like, I don't know, little pool of water, and then they kind of blast the little businesses. Um, you know, Le. Bless the stone into pieces so that you can pee it out into pieces and they give you like a little, I call it a hat. Um, little filter that you can pee through so they can collect the stone and then they send the stone away to see if it's a. 

Uh, citric acid, I believe, or uric acid. Stone. So. Needless to say after that, I was extremely happy to pass that stone, but unfortunately that was just my. First kidney stone of many to come. I am now almost. Let's see. 25 years. Some later I am continuing to grow kidney stones. My father tells me that I grow rock gardens. 

Um, because I found out that I have Sponge kidney. So apparently imaginary sponge kidney is something that you can be born with. Most people are born with this. Um, the insides. Of the kidney, our sponge, like, and so the urine gets stuck and can cause crystal, crystal, like, like little pockets, um, that. 

Create the stone. It's all just wonderful. Right? So. So now I've got this other condition. I'm literally just adding, adding these lists. You know, the little summary sheets that you get from your doctors, right? And they just, um, they add to the list and I'm like, okay, here we go. Here's another thing. 

So I started taking a medication to hopefully, you know, keep the stones at bay and to just keep my, um, my urine from crystallizing in my kidneys. But through the years, I've had so many lithotripsies and you read her ass copies, which is where they actually have to go in and grab the stone because of where the placement is. And then sometimes you need a stent, which is really fun when it has to come out. Um, 

It has caused some scarring and it is in both sides of my kidneys. So I have to see a nephrologist, uh, Every six months and they run some tests to make sure that my kidneys are functioning properly. So here we are now. During this whole time, you. Um, my biggest symptom was always fatigued. Always, always having fatigue and joint pain. And I'm like 20 years old in my young twenties. And I'm having all of this, you know, all of these issues. 

It wasn't far after that, when I had seen a rheumatologist and I went for several blood tests and my marker for my, um, a and a. For it's an inflammation. Marker was hi. So after that they  diagnosed me with lupus. Now there are different types of lupus.  So I'm just gonna I'm on the lupus website. And I just kind of want to go through a couple of things about lupus, because I feel like it's been. 

A lot more people have been diagnosed with this lately. And I just want people to know a little bit more specifically about this disease who would affects how it can affect you and the different types of lupus. So. I'm reading off of the lupus research Alliance website. You can find all of this information there too. If you have a loved one, I can go ahead and I'll, you know what, I'll just copy this and put it in the show notes. If you have a loved one that struggles, or maybe you want to just read through this better, um, this way you can send it to them. So. 

Lupus is a chronic and complex auto-immune disease and it can affect any part of the body which can cause widespread inflammation. And tissue damage in the effected Oregon. So most commonly the impacted areas are the joints, the skin, the brain lungs, kidneys, and blood vessels. So the different types of lupus, the most common lupus that most people have is called systemic lupus, Aretha Mudd, ptosis, or S L E. 

And it can affect a lot of parts, different parts of the body. So there's also different types of lupus, cutaneous, lupus, which causes like on the skin and can cause rashes or lesions. Especially when you're out in the sunlight. Or a drug-induced lupus, which is similar to SLE. But can cause an overreaction to certain medications, but will go away after the medication has stopped. 

Now neonatal lupus occurs when an infant acquires the auto antibodies from the mother that has the lupus S L E so. Sometimes the skin liver and blood problems can resolve within six months. The most serious problem though is a congenital heart block, which can require a pacemaker. 

Who is most likely to get lupus? Well, anyone can get lupus, but the disease mostly affects women. And it's actually makes up about nine out of 10 adults with the disease. It's also more common with, um, African-Americans Hispanics, Asians, and native American descent re. Than in Caucasian women. Does lupus run and families, according to the most recent research genes play an important role and maybe a risk factor, but genes alone do not determine who gets it. 

It's likely that many factors trigger the disease. So what actually causes lupus? Well, Unfortunately lupus remains unknown, but there is solid evidence that genetics epigenetics changes in chromosomes that affect gene activity, environmental factors, viruses, and infections play a role. Like the EBV virus. 

That doesn't say that I'm adding that in there because that creates a weakened immune system. Further studies of these variables is expected to improve our understanding of causes, which should lead to improve diagnosis, prognosis prevention, and treatment. Now is lupus serious? What is the risks? The most serious risks are cardiovascular disease, kidney disease, and stroke. 

Specifically people with lupus are at an increased risk for our Theo. Uh, I can't really pronounce, this are thrilled skill Rosis, which is the deposition of fat and cholesterol plaque. Along the lining of the arterial wall.

In some people inflammation can occur in the heart itself, which is myocarditis and endocarditis or the membrane that surrounds it. 

What are the symptoms of lupus people with SLE? The most common form of lupus may experience with  varying severity, which is fatigue, pain, or swelling in the joints, skin, rashes, and fevers. Now, if you've heard of the butterfly rash, that is like a telltale sign of lupus. The rash goes across the cheeks, up on top of the nose. And so it looks like a butterfly that is like a telltale sign of lupus. Just going to add that in there. 

So how do they actually diagnose lupus? Well, unfortunately there's no single test to definitively diagnose lupus, so it could take months or even years to really be sure most likely the doctors have to rule other illnesses out. So they do a complete medical history, physical exam, lots of blood tests. 

The Dr. May also perform skin and kidney biopsies.  They'll extract tissue samples. And then they examine under a microscope to make a diagnosis. 

What are the treatment options for lupus? You might need to see different kinds of doctors to treat the many symptoms of lupus, but once you're diagnosed, your primary for lupus is usually a rheumatologist who treats arthritis and other diseases that cause swelling in the joints also known as any auto immune disease. 

The rheumatologist may then send you to a clinical immunologist for treating immune system disorders. Uh, nephrologist, like I see, which helps the kidneys, a hematologist for the blood. Dermatologists, if it affects your skin or a neurologist, which affects the nerves. Cardiologist your heart and blood vessel problems and an endocrinologist. If it affects your glands and hormones. 

So treatment plans may aim to prevent or treat flares, prevent or reduce organ and joint damage, reduce swelling and pain, help your immune system or help balance your.  Hormones. Now, unfortunately. There's really no cure for lupus, but researchers are making progress and hopefully. 

We can understand a little bit more about this disease and how we can either prevent it, hold it off. But a lot of it is unfortunately just inflammation and trying to keep inflammation at bay. So if you have the choice to follow. , low inflammation type, diet and lifestyle. Do so, especially if you're already struggling with these diseases now. 

I hope that that shed a little light. On , the topic of lupus for you guys. I know that. It has become a widespread illness these days. And sometimes I'm hoping that doctors just don't throw it out there to be like, okay, well you have lupus because people, you know, really go to their doctors and their healthcare team for answers. But unfortunately, because lupus does not. 

Have a definitive yes or no blood test as many autoimmune diseases like fibromyalgia. Um, they don't have , any specific tests for them. So they ruled them out, but unfortunately it's really just a guess. So Just keep that in mind. 

So after I got diagnosed with lupus. It really was a domino effect from there. Um, after I had my children, I started getting a lot of GI issues, like a lot, a lot. Which caused all my abdominal. Surgeries I've had a six, but I've had two C-sections with my children. My daughter's was an emergency C-section. 

Um, I apparently my placenta was attached to the uterine wall, which caused me to bleed profusely. I, it was the scariest moment of my life. I honestly thought that if I was going to close my eyes in the emergency room, that I, um, or the operating room that I wouldn't have woke up. So I was in the intensive care unit for two nights. 

Before they moved me to the labor and delivery room, which I plan on breastfeeding my daughter, but I couldn't, because I didn't even have the energy to hold her. I needed a blood transfusion. So they gave me two liters of blood. Which luckily. Um, you know, helped me. My iron was extremely low. I definitely felt better after having the procedure. 

Um, but it was scary knowing that somebody else's blood is, you know, going to be circulating through my body. But it saved my life. So for anybody out there that donates blood. Thank you. Thank you. From the bottom of my heart, had you not done that? I might not be here today telling you my story. 

So I'm going to kind of wrap this episode up here just because it's a, we're kind of going on a half an hour and I don't want to keep talking your ear off about my issues. Um, but next week I'll go into a little bit more and kind of continue where I left off. But until then, I hope that you guys are following me across all my social medias. 

I did have to change my Instagram account name. It was hacked. So my new user on Instagram is 1, 2, 3 moms squad. Quad everything now is actually 1, 2, 3 mom's squad. And you can find all the links on my website as well, which is 1, 2, 3 moms squad.com. And, um, and don't forget to subscribe to my YouTube channel. I am going to be putting more videos up there about my journey. 

Just cup, like two minute videos, two, three minute videos about pretty much what I'm telling you now. So you can, you know, about everything that I'm going through and that I have been going through  . 

That I'm a real person telling you and sharing my story. In hopes that I can reach out to those that need this type of support. I'm here for you. I understand you. And if you ever need somebody to talk to. I am here. That is why I really wanted to, that's why I created my connect and reflect mentorship program to help those more personally that need that type of support. 

Because you're not broken and you're not defined by your illnesses. You can still live and love your life no matter what. And that is what I am here to help you do. And I came up with this quote the other day. Just because you don't feel whole, does it mean you're broken? Please keep that in mind. Next time you're feeling down and out. And I know we all get those days and it's totally okay because we're human. 

But don't stay there. All right. Don't stay in those dark days because there is light out there and I am. Proven fact of that because you have the ability to change somebody else's life too. So put that chin up. You got this. I got you. We have each other. And that's why I'm here. So. Thank you for being here and thank you for listening to my story.  

You are an amazing person. And I hope that you know that and don't ever forget it. So until next time my friends i will see you next week.



 Thank you all for being here. I am so glad we found each other. See you next time. Have an incredible day. My beautiful friends.