001 Aaron & Sarah share their Lyme story!

From the creators of Lyme Voice and Disappearing from Society comes a brilliantly simple idea, but this time it comes as a book. Imagine a world in which birds can talk like people. You'll get a bird's-eye view of life with Lyme disease as one bird family must unite to overcome the obstacles of life with Lyme disease. Guaranteed to make you laugh and cry. Written in a way that helps you articulate the losses you are experiencing as a household while simultaneously empowering you to keep fighting. Little Bite, Big Trouble is available today at Amazon.com.

Congratulations, Lyme Fighter. Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. We're your hosts, Aaron and Sarah Satchis. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, to educate, and to encourage you on your Lyme journey to wellness. Together we will fight, together we will heal, and together we I'm Aaron Sanchez, and I'm Sarah Sanchez. We wanted to tell our story. Why do we want to tell our story, sweetie?

We wanted to tell our story to spare other people the suffering that I endured from not knowing, not having medical people who knew what was going on, not understanding that anyone could actually truly be sick for decades. Um, yeah, yeah, there's just a lot of loss that goes with that. And the sooner, the sooner you know what's going on, the sooner you have something to fight against, right?

Well, I guess we should introduce ourselves. Um, I'm Aaron Sanchez, born and raised in mostly New Mexico, um, Central Park, Albuquerque, Belen area. I am the oldest of 7 kids, and Sarah is also the oldest of 6. Our parents are pastors or have been pastors. They're both retired currently, but we're both PK kids and we knew each other all growing up. That was one of those weird stories where you— we, we met, we knew of each other but weren't really friends, and then as we matured and got older, became friends, and knew it was love at first sight. And we are currently been married 14 years, 15 years, 16 years.

Derek's 15.

16 years. I knew that. Yeah, 16 years, which is a victory because we've had everything thrown against us to destroy our marriage and we're still standing. So good job, us. That was a high five, in case you didn't know.

So I think, you know, our Lyme story starts back in 1996. I was camping with a bunch of friends from high school, and I got bit on spring break. Um, it was— I had the typical bullseye rash, except nobody knew what it was, because we're in New Mexico.

New Mexico does not have Lyme, according to the so-called experts.

Yeah. And so I was told it was an infected spider bite. And I don't remember if I was in on antibiotics. If I was, it was insufficient. But really, my first symptom right away was just consistent migraines. And that, that was my big thing. But my personality is pretty much like a goer and a doer and a push through stuff. So It didn't hold me back. And really, I didn't really know anything was wrong, even for a lot of years. I knew I didn't cope with things well, like my first 3 pregnancies, or my only 3 pregnancies, but they just got consistently worse. I was spending more and more time in the hospital, more meds.

Yeah, each pregnancy seemed to get worse, huh?

Yeah, oh, for sure. Yeah, and, you know, I was 21, 20, you know, between 20 and 25, and I would tell my doctors, you know, I've, you know, throwing up like days in a row, days and days. And I kind of got the typical, oh, everybody has a hard time when they're pregnant. Basically, you'll get over it. And I really didn't. It took me forever to recover after my pregnancies and just kind of got used to the fact that I didn't cope with a lot of things real well. Yeah, physical things.

Yeah. And at times, until recently, I always felt like we were kind of weak, like we couldn't handle most of life. Like you were fragile, which you were because of Lyme, but we didn't know it was because of Lyme.

Yeah, and that's one of the hard things about Lyme. Like, you, you only have your own body to judge how everyone else is functioning around you. So when you see people being able to like leave the house and not look like a complete wreck, you start to think, okay, I'm just a wuss, or there's something wrong with me, or I'm not cut out for the challenges I've incurred because my body just continues to fail. And I obviously now looking back, there was no lack of strength. It took a phenomenal amount of strength and courage and fortitude just to get up every day when you're facing a day filled with horrendously chronic pain and horrendous neurological symptoms.

Right.

Yeah. And I think it should be mentioned too that not to toot our own horn, But we are highly functioning people. So when Sarah started, like, we were the kind of people that could remodel and list a house in a weekend. You know, Labor Day weekend, wasn't it? We remodeled.

Yeah, we could. My family used to say operating at the speed of Sarah, and it used to mean like I would get an idea and have it done and completed in a day or something, or I could just tackle big projects and um, right, stay up late and had lots of friends. We were really involved in our church.

We—

I had lots of hobbies, um, and I worked, and— but yet we were able to balance it and loved it. And then just as the years kept coming on and I kept getting worse and worse and worse— so really my major symptoms started in 2007 when I was rear-ended, and it was a minor accident, but it just sent me into a tailspin for 2 years where I at that time we were homeschooling our kids, so I had 3 little kids and I was dragging them back and forth to all these chiropractic appointments, physical therapy appointments, massage appointments, just trying to stem the chronic pain and the chronic migraines that I was living with as a result of that first accident.

Um, yeah, and at the time we had no idea why you were reacting so violently against these minor issues that normal people—

yeah, my first accident, like after about 18 months, my chiropractor was like, well, you must just be among the, among the 5% who can't get better. And that's where they left me, like, yeah, well, sorry.

Yeah, that's what— yeah. And, and that is really the moment when, as you weren't getting better from these situations, that's when they— well, are you depressed?

Oh yeah. So yeah, for years and years, yeah, starting to go into those appointments, I'd be like, look, I'm just in excruciating pain. I have headaches all the time. Every part of my neck and back hurts constantly. I'm not sleeping. And yeah, they kind of like— they, they being a series of doctors and a series of primary care physicians would just continually offer me nothing.

So over a series of years.

Oh yeah, over and over again. And so here again, We are looking at it as being triggered by the accident. We're not looking for— I mean, they ruled out cancer, and I went through a period in like 2009 where I lost a ton of weight, like 30 pounds. My hair was falling out. Like, I was not processing any of the nutrients that I was eating, and so I was just getting real thin, which is— I'm normally not thin. I have very athletic build and It was, it was eerie.

Right. Now let's back up a little bit. I think we fast-forwarded, uh, okay, so we had the, the accident.

Yeah.

And you started to lose weight at this point. And this is now, as far as our timeline goes, this is the point, um, when we decided to adopt our two youngest.

Yeah, we had known we had wanted to adopt. And again, at this point, even though I wasn't feeling well, we were believing it was because of the accident and It takes about 2 years to do an adoption, so we went ahead and started doing the paperwork and all that stuff. And really those next 2 years we just spent trying to recover from the accident and getting ready for the adoption, which was completed in the fall of 2009, and then we were able to go get them in the spring of 2010. The thing that happened in 2010 is about 2 months after we brought our kids home from Ethiopia. So we have 3 young kids, We have 2 now, a boy and a girl, who have severe attachment disorder, severe anxiety issues.

So 5 total.

5 total. And I get rear-ended in another car accident 2 months after they come home.

Right.

And so I literally— and I was hysterical on the scene, the most hysterical I've ever been, because these—

you knew what was coming.

Yeah, I knew that for the next 2 years I was going to be dragging 5 kids to all these appointments. And just the devastation that that does to your routine. And I remember—

although, and then if I can interrupt, although it has to be said, at this moment it is way worse because the first accident we had 3 kids. Now we— now it's even more dire because you still haven't recovered from the first accident, your back is still hurting, you're still having major health issues, 2 adopted kids with severe attachment disorders that are taking up a lot of Time, energy, ruling the house. I mean, it is, is all-encompassing moment. 2 years. Plus, after you got home, accident number 2. Accident number 2. And of course, your back starts instantly hurting.

Oh yeah, it was like my body just reacted instantly. It was just— and really what was happening was I was herxing, except I didn't know what herxing was. I just kept calling it utter fatigue. Can you describe herxing?

In case anyone's—

Yeah, that's great. Yeah. So a herxing to me was very confusing when I learned about Lyme. I kept hearing it. I would like, for instance, when you go to get a glass of water and you're holding the cup, who has Lyme, they're not only expending energy to reach their arm out, like all the ligaments and the joints in that entire arm are screaming at you like you've just lifted 400 pounds of weights and you have the flu. So basically any, any sort, any amount of physical energy, like even stretching in the morning, would trigger this immediate response of utter fatigue. And it just felt like something was sucking the life out of you. And if you've ever walked around with the flu, imagine 2 days before you got the flu, you started this massive weightlifting regimen. And so you're sore, all your tendons, your muscles, your joints, everything is hurting. And that's what a Herx is. And I just kept referring to it for years as utter fatigue, because you not only had to expect, like, things that you didn't normally think about, like holding a cup over the sink. But then after it happened, sometimes that utter fatigue would consume you for sometimes 2 seconds, sometimes 20 minutes.

Yeah, it really is an unbelievable amount of exertion and effort just to do normal day tasks, which is part of the problem, because that is so out of the norm that most don't really hear. They don't understand. I didn't understand and I was watching you do it. It wasn't through— I mean, it really— it has taken me 6 years to understand what a Hertz is because it's so out of the norm. So from a doctor's, from an outside perspective, I see where their mistake is. Their mistake of this must be in her head. There's nothing like that. There's no existence of a disease that horrible. But for those of you who are listening, it's, it's true.

Yeah, I describe it as being an incomprehensible disease because it really is. The person experiencing it continually over and over, you would just get— you just start to think, okay, I'm just a wuss or something something is wrong here, I can't cope with it. But in reality, you're expending, uh, 10 to 100 times the amount of effort that you normally would be because your body is fighting this chronic debilitating illness that it's attacking your brain, your central nervous system. Um, and so really what happened for me in that 2010 was I began to have a lot of neurological issues. My hands and my feet began to feel like they were asleep all the time, but it was really painful. Like painful needles. So it, it really is an incomprehensible disease. And so as I'm going to these different doctors telling them, hey, there is this— I am in excruciating amount of pain, like everything, normal tasks, uh, I can't even do because I can't withstand the pain of standing up to do the dishes or move laundry ahead or all those things, because my limbs were falling asleep constantly. I was twitching. I was in horrendous amounts of pain. And then you're taking pain medicine and all these things. But really what began is I was so thankful I didn't have a history of depression beforehand. Yeah, but every time I went to a doctor, they would listen to me and then they would start to question, well, you have a lot of kids, that's probably, you know, you're probably depressed. And I kept telling them, no, I'm not depressed, I'm in pain. Yes, I'm crying in your office right now because my life is like falling apart and my body's not working. But that doesn't mean that the depression is causing the pain. And that was so frustrating.

You were— and which is horrible, but very— okay, it needs to be said, you can be depressed because of pain and not be a depressed person, right? Don't let anybody tell you otherwise, because yes, when you're in pain for a large amount of time, it's depressing. It's hard to face the day. It's hard to wake up and open your eyes and face another day. That is a very hard thing. That's a depressing situation to face day after day. You are not depressed. You're depressed because of pain.

Yeah, and I really felt like every doctor I saw was like, oh well, I think you're depressed, therefore these things are happening. And I did not take a lot of antidepressants or pain medicine that they were recommending because I was so adamant, like make. No, I'm not depressed. I have a really good life. We've done a lot of things, like we've fulfilled a lot of the goals we've set for ourselves, and I'm happy. I'm where I want to be. I'm just drowning in pain and fatigue and neurological issues. And so really what I felt— I had read a book called The Pain Chronicles by, um, Melanie Thernstrom, and she describes the the different cultural influences, the different religious beliefs that people bring when they walk into a pain clinic. And I'm reading this book and I'm like, why do I not have a pain clinic? And I'm astounded to find after like 4 years of chronic pain that nobody ever told me, hey, there's pain clinics that—

no, yeah. And, and to describe the level of chronic— this is not like— this is like Every, like, heavy doses of hydrocodone, you know, morphine. Was it— were you on morphine?

Not at this point, but yeah, every— I would— I took every major drug and as much as the doctors would allow, basically.

So we kept— we kept wanting more, or you kept wanting more because you needed— it wasn't working. It wasn't working, and you were in extreme pain all the time. So You were astounded to find out that there is such a thing as a pain clinic, and I was mad at myself because I hadn't. But just in case people don't know what a pain clinic is, because you didn't, explain what a pain clinic is.

Okay, pain clinic is just— it's a newer field of medicine. Before, it was always thought that, oh, if you're running a fever, treat the disease and then the pain will go away. And now they're realizing that pain for a lot of people does become the syndrome, pain syndrome, in and of itself. So you can go to a pain clinic with doctors who really understand pain levels and are way more proactive in helping you to minimize those symptoms. They're not—

they're, they're not going to find Lyme necessarily, or mine didn't, but no, um, it's still a Band-Aid fix to the issue of Lyme, but at least it was somebody that was paying attention and giving a little bit of effort into managing your symptoms, which is the first we found. So if you haven't found a pain clinic, that's a great start. Look into it, ask your primary about it, because you're gonna need a primary as far as I understand.

We're not offering medical advice, we're just telling you our story, right?

Don't be mistaken.

If, if I were to go back and do it again, I would get a pain clinic much sooner. And I— but here's the thing, in the book as I'm reading it I was mad at myself for having not investigated and found out this thing. Well, in her book, The Pain Chronicles, she specifically says like it's 5% of people who should be seeing a pain clinic or a pain doctor are actually seeing it. So there's a huge percentage of people who are just struggling to exist and their primaries are, are in, at least in our experience, very few people could offer us any help. So at that point, like, I had just kind of concluded, I'm probably going to live the rest of my life in pain. It's just a matter of trying to make the most of it. And so, and I mean, I had lived with such high levels of pain and fatigue and really the inability to stand for a couple of years. And but then you just keep going, you keep adapting your life or modifying it, or really your life just starts to get really small because—

it's the best analogy is totally the frog boiling in the water because that's really what you end up at. And before you know it, you're about to die because you've adjusted in it and made, you know, you've just accepted your reality for too long because no one is offering anything else.

Yeah, it wasn't like we weren't fighting. I mean, I, I do not like to watch TV. I was doing it because that was really all I could do, like when I had to sit down and rest and For years, my legs and my hand— my legs and feet just tingled and tingled unless I was like sitting in my bed with my feet propped up. And so for years, I would like sit down for a half hour or an hour, make myself watch television or something, and then get back up hoping that that would help me, you know. And you keep adapting and trying to modify, and you keep eliminating things from your life. But when you're in that phase of chronic illness and you're spanning, you know, a decade, that's— it's hard for you even as a person to say, hey, this isn't me, because it is you. You think you remember what it's like to not be in pain and not to have to sit down every few seconds to catch your breath. But for me, I mean, I had lived with the inability to breathe and walk at the same time or breathe and talk. Anytime I went up the stairs, I was completely winded. I was always in pain, and this was pain— it would make me throw up very consistently. Like, at this point, the pain every day was far, far beyond the pain I ever experienced delivering any of my kids. And so if, if you can factor— if you can wrap your head around it, I literally would just wake up every day and just pray that God would give me strength to meet the needs of my kids and because it literally felt like it was just sucking the life out of me to walk up and down the stairs.

Yeah.

Okay, well, let's get back to the timeline a little bit. Um, we talked about pain, we talked about—

so I think in 2012 is about where we're at. And in 2012, I really began— I kind of concluded that I'd probably live with pain my whole life. But I remember starting to think that I was going way downhill. I was having a lot more neurological issues. I was becoming very clumsy. I was dropping things or forgetting a ton. Like, I was constantly leaving the fridge door open when I was getting food out.

That's right, I remember.

Because if I didn't leave the fridge door open, I would forget what I was doing.

And so it took me forever to figure out because I'm like, why do you keep— I walk in and you're upstairs and the fridge is wide open. I'm like, sweetie, what are you doing?

Yeah, I really began to modify my in weird ways, things that I'm still now trying to unlearn. Because when you have no strength and you have no stamina and you can't breathe, you start to modify. You don't go around the house picking up, you just—

yeah, you know what, let's talk about you not breathing because that was a major symptom, symptom, hiccup, problem that you encountered. So when you say I couldn't breathe, what is, what is that? Now is that If I remember correct, is that part of Herxine at times?

No, no, it's the— it's a respiratory infection. Uh, it's a pneumonia, like there's chlamydia pneumonia, and for me that was one of my co-infections that I had.

So you were actually diagnosed with chlamydia pneumonia?

Yeah.

So that was the cause of your— yeah, so we didn't know this at this point, right?

And if any doctor— this is what's so frustrating— if any of the 12 to 15 doctors that I saw over this 15-year I was constantly telling them I cannot breathe, I'm winded all the time. So here, like, if I had to walk up— I had little kids too, so, and I run a real estate company and I'm constantly working from home. I'd have to like go up the stairs and so that I could hear the conversation if the kids were downstairs. So anytime I was on the phone, I'm up and down the stairs and I'm so winded, I just cannot catch my breath and I'm just heaving to breathe from just exerting a couple of steps. And this started happening way over 15 years ago. And also the inability to stand. No doctor ever said, hey, you know what? That's not normal. Your inability to stand. There's a medical term for it. I forget what it is, but it's a real thing. And it really doesn't happen to normal people. So I don't know, not being able to breathe. I remember thinking I couldn't even walk from like the car to my son's soccer game, like the field. I'd be so out of breath. I constantly had to have a chair. But none of the doctors I ever saw took these as like legit things. Of course, they, they would check for cancer every few months.

Yeah. Put a stethoscope on your back. Well, your lungs sound clear.

Yeah. And everything. Of course you do blood work because I went in like during those years, About every 3 months I would go in and say, draw my blood, something is really wrong, we've got to keep trying to figure this out. And I mean, I was very persistent in just saying something is so wrong. But you do—

that's an important point because this is, this is about this time, about 2012. So we're what, 12 years into the issues? We realized that we had to fight for ourselves. The doctors were not giving us answers. The doctors did not have a clue, and because they didn't, because they had 15 other patients behind us, they just— the unknown file, and we get ignored. Or not intentionally, but if you don't have an answer, what can you do? And I mean, I understand the system. It's a broken system, so I'm not blaming each doctor individually, but this is what happened to us. And the reason we're bringing this out now The reason we're doing this podcast is so you, if you're listening and you're in the same situation, you can know it doesn't have to be like this.

Yeah.

And there's answers out there.

To really, to advocate for yourself is such a huge lesson because I think initially I, I don't know, I, I guess I just assumed if there was something wrong, they'd figure it out, but they weren't. And I remember in 2012, I ended up— I was having more and more neurological issues, more and more missteps or falls that were really unusual. I'm athletic. That was not an issue for me in the past, but I just couldn't— I just lost any athleticism and just really was struggling. Obviously, I was struggling with neurological issues and dexterity issues, but, but again, it was all minimized. Like, oh yeah, this is just pain, your nerves. I mean, for years they're like, oh, your nerves are overreacting. And when I cringe when I see commercials, you know, with fibromyalgia people, because that's how they diagnosed me for 7 years. It was like, oh, you have fibromyalgia, just get used to this. Like, your, your body's not functioning normally. So then you push yourself, you think, oh, okay, my body is telling me I'm in pain, but I'm really not because my nerves are dysfunctional.

Yeah, we were believing the fact that we believe in the doctors when they said there's nothing wrong with you. You are not sick, it's all in your head. So therefore you go out and push yourself even harder, because if it's not real, if it's all in your head, then your body should be able to absorb it. Unfortunately, in this case, your body was revolting.

Oh yeah, I was so sick and just didn't know it. And I mean, I felt it, but life doesn't stop. So you have to choose when you are dealing with a chronic illness and your illness is expanding over decades. You make a choice every day. Okay, do I let this disease or whatever this unknown unknown thing consume me? No, I wasn't gonna let it steal from me. There were days, lots of days, where I literally could not get out of bed, and I would like write "lost day" in my journal because I couldn't even go and move the laundry ahead. I couldn't even, um, do those things that were really important to me. And really, during this period, like, even, even things that we had been able to do, like, um, hire housekeepers to come in and help cover things we're just at the point where we are out of money. We were literally hemorrhaging. We were hemorrhaging money at the chiropractor every week, at the massage place, at the acupuncture place, because each thing would help incrementally, maybe 3 or 4 or 5%. But then you get to this point where, like, you know, you, you can spend $500 a week trying to manage your pain and you're only getting a 3% reduction. So you start to say Okay, I'm not— this isn't beneficial. So you, you don't go and do those things because you want that money for soccer registration or cleats, or it just became this horrendous cycle of—

yeah, and all the time they're also telling us this is all in your head. So you never even give yourself the confidence to fully invest into this because the doctors, the experts, are telling you what— and they are experts, it's just not in Lyme. Lyme, they're not.

Yeah, they're not. And so even—

excuse me—

so really in 2012 what ended up happening was I took one wrong step down my stairs and I fell and I herniated my disc. And this put me in bed. I literally, like, my left arm was basically tied to my side. I couldn't really— couldn't use the whole left side of my body. And it ended up the first physician that I went to see said, oh, you're fine, you're young and healthy, you'll be fine, right? And I'm thinking, this guy didn't even open my folder because I am not healthy in any way. And so we had to wait for another surgeon. During that time, I'm on huge amounts of morphine, so much morphine that I should not have been driving. Like, nobody told— nobody said, hey, by the way, you're taking all this medication, you shouldn't be driving. And so I, as I had a harder and harder time driving, did it less and less just because I didn't— couldn't turn my head to look out the mirror or any of that stuff.

Yeah, you were struggling to get up and get out of bed, so your driving kind of stopped except for emergency situations, which was almost every day at this point. Let's stop for a second and describe—

now, had you—

did you—

have we— had we, um, applied for disability at this point?

Yeah, during this time I applied for disability for the first time.

No, the, the herniated disc time? Yeah.

Okay. So I applied for, I applied for disability. And the thing is, when you apply for disability, from the day you apply, you cannot make more than, I think it's around $1,000 or $1,100 a month. So I should have applied for disability about 2 or 3 years beforehand, but I just wasn't at that place where I could give up X number of dollars every month to hold out for disability. It's super—

wait, oh yeah, we were working. You were working during all of this?

Like, yeah, I was still working.

I needed this.

Accidents. Yeah, so obviously I kept trying to take on stuff for work and ended up really not being able to fulfill a lot of that stuff because I was just super sick. Not only was it just a herniated disc, it was herniated disc with— yeah, Lyme. But so Yeah, so this is this horrible fall of 2012. I'm waiting for my surgery. When you apply for disability, here's something you should be aware of. I applied for disability through the Social Security office. I did not know that you could get a lawyer to help you and work on your behalf for free. Um, I would never recommend applying in person by yourself. It actually was a horrendous experience and cost us Tens of hours of time. And the thing that happened is when you apply for disability, they will automatically enroll you in Medicaid, or at least this is what they did with me. And I've heard the same story from dozens of people. They applied me, put me in Medicaid. I never asked for that. And we are self-employed and we had a self-employed insurance that would only be the primary. If you ever had other insurance, you lost that coverage. So I never would have applied.

It was really good insurance.

It was great insurance. Yeah, it had really kept us afloat all those years of crazy medical bills. It had— we had great coverage. So I was enrolled in Medicaid for 30 days, and at 30 days they said, by the way, you don't qualify, right? And, and I lost my Medicaid coverage, but I also could not get back on my old coverage because we were grandfathered in.

That program no longer exists for the self-employed, right?

So literally what happened to me is when I applied for disability I lost my insurance during the time that I was getting a herniated disc surgery. And before we even knew any of this had happened, we had had tens of thousands of dollars incurred in medical expenses. So just think about disability. Disability is a hard thing when you don't know how long you're going to be sick, but don't do it by yourself.

Yeah, get lawyers. And lawyers, you have to shop around a little bit from what I understand. But look into it, do the research, because there is some out there that will give you, uh, will bill you at the end of your settlement so you don't have to pay up front, right? And yes, you're gonna have to pay a lawyer, but it's well worth it because as when you're struggling just to wake up and get out of bed every day, you cannot handle something as intricate unless you're already in that field and you understand. But we didn't.

Yeah, and I was actually— I had done a ton of our own legal work through our our adoption and our company. Like, I was comfortable actually reading legal documents.

And in a healthy state—

in a healthy state, it was just a disaster.

You were in a sick state. You were not capable anymore.

Yeah. So I think really what happened around this time is I really— that even that those few months before I had that herniated disc, I was start— I remember starting to think, I don't think I'm going to live to see my kids get older. Like, this is not normal. Like, to have to just every day face every day where, you know, your pain is going to be so excruciating you're probably gonna end up vomiting. You can't. Um, yeah, it's, it's awful.

And so I remember thinking, like, yeah, there has to be an end to that.

Oh yeah, really. And even at the beginning of 2012, I'm thinking, you know what, I'm not going to be around. This is not— this is so dysfunctional and requires so much effort just to do something simple like this. I can't endure this.

And you were in so much pain.

Oh yeah, the pain was off the charts. There was no— I mean, you go into these pain clinics and they're like, oh, what kind of pain are you in today? And I'm like, well, on a scale of 1 to 10 now, my like, okay, if you have a baby and, you know, kind of like in the whole kidney stones delivering a baby, that's like, like a 5. And I'm thinking, yeah, okay, that's at a 5. I'm at like an 8 pain level, which is why I can't stop throwing up, you know. Right. Something is so very wrong. And, but, uh, and Aaron and I have talked about this and we've talked through this with my family. Like, from my opinion, I had been saying for a really long time that I felt like I was dying. And, and, but I don't really feel like you guys heard Well, yeah, because—

yeah, and that's hard. That's a hard situation for both parties because even as the Lyme's caretaker or the spouse, you're still— you, you— we've been trained that the doctors are right, that the doctors know what they're talking about. They make an income, they went to school for 8 years, right? We know that doctors know what they're talking about, so you listen. So the experts are telling me she's fine. She's telling me she's not fine. You end up listening to the experts, and is really what we did.

Yeah, and it really is the, the frog in the boiling pot. Because obviously, if you had walked into my house as the house is falling apart, and I am in bed for majority of the day, you'd be like, hello, something's really wrong here. Yeah, but it had been over a decade for us of things, me not coping with things, and me having a hard time. And even when I had my herniated disc, I'm like, of course it's me, you know. Why does this stuff keep happening? This is so— this isn't me. And yet, yeah, and yet it is, because it's been part of your MO for so many years, right? And so that's really why we wanted to start doing these podcasts, because Because families need to know that when their family members are saying, look, I'm dying, or I really literally cannot get out of bed, that person, if they're a productive, normal person— I know there's some people who get some thrill out of being in bed or whatever. I'm not talking about those people. I'm talking about healthy, productive people who are, you know, contributing to society and their communities and their families. That pain and fatigue literally stops them from functioning, right? And it was— we even have video of later on when I was having seizures and stuff, and the neurologist literally is telling Aaron that she's causing all of this because of anxiety. And I'm sitting there in a wheelchair at this point.

I finally caught on that these doctors got their heads somewhere. Anyway, so I was understanding at this Right?

Yeah, but we didn't know what to do, and nobody did.

And you were so frustrated with me because I didn't know.

I was so heartbroken because I just felt like you weren't fighting for me, which you were doing everything else. You were keeping track of— you were keeping the house afloat, you were earning all the money, you were paying the bills, you were doing the grocery shopping. But I was— I felt like at that point, like, I was so weak, I didn't— I couldn't fight. Like, I didn't know what else to do. And even—

yeah, it's a horrible spot. And if you, if you listening know of someone in this spot, if you're in this spot, you get out. You can do it. We did it. Like, you look for help. Listen to our story. Don't stay there. Don't accept this as your reality. Yeah, this is not normal. It's not in your head. If any of this is sounding familiar, look into Lyme. Look into getting proper testing, looking— because we're going to talk more about this, and we'll have resources on our page, on our website, limenvoice.com, so that you can find the right kind of tests. Educate yourself, because what you're going to learn, if depending on what part of your Lyme journey you're on, you are your own advocate. Yeah, for sure. You, you really are. You and your spouse are on your own. You have to understand what the doctor's saying. You have to understand the treatments that are being given. You have to understand that, uh, the, the ins and outs of Lyme's. And you can't go from one source. You have to get out there. So one of the things that we hope to continue to do with this story is just bring in more options, more information to educate yourself.

Um, yeah, and, and that was one of the things, like, I didn't want to lay in bed. I wanted my time to be profitable. And so I, you know, reading tons of books on health and nutrition and illnesses. And, you know, we're going to bring some of that into our format and different authors and different physicians around the United States who are willing to speak with us. Hey, thanks so much for listening to Lyme Voice and the first part of our story. Be sure to listen to the second part. Get ready for more episodes in the coming weeks.

And also, for more information about our show, go to LionBoys. We got some of the products we've used, some of the books that Sarah's read and I've, that I've read. We've, we have for list for sale on our website. Feel free to check out that. Sarah's blog's there as well. And also, please feel free to share this with your friends on Facebook and on Twitter. We need your support, and the best way to do that is for you guys to help us spread the word. Together, we're gonna make our voices louder.

Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters. Keep it up. We'll see you next time.

LymeVoice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. Okay, Lincoln?

Okay.

The medical information on LymeVoice is provided as is without any representations, warranties, expressed or implied.

Okay?

Okay. LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents. Okay?

Okay.

If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast.

Got it, Lincoln? Got it.

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Dry.

Written in a way that helps you articulate the losses you are experiencing as a household while simultaneously empowering you to keep fighting. Little Bite, Big Trouble is available today at Amazon.com.