004 How to Survive the Lyme Bomb, with Philip & Emilee Gamache
6 Apr 2015 · 39 min
In this episode of the Lyme Voice podcast, hosts Aaron Sanchez and Sarah Satchis (joined by co‑host Lincoln) sit down with Philip and Emilee (Emily) Gamache to discuss their long‑term battle with Lyme disease. The conversation begins with a promotion for the book Little Bite, Big Trouble, which uses a bird‑family metaphor to help families articulate loss and stay motivated. The Gamaches recount Emilee’s early health struggles, the vague tick exposure, years of misdiagnosis (including a provisional MS diagnosis), and the eventual discovery of Lyme and co‑infections through a live blood analysis and CD57 testing. They describe the challenges of finding a knowledgeable doctor (Dr. Hillary Schlinger), navigating negative standard Lyme tests, and dealing with costly, experimental treatments. The episode delves deeply into family dynamics: the strain on Philip as a caregiver, the logistical nightmare of meals, laundry, and childcare, and the emotional grief of losing once‑normal activities. Practical coping adaptations are shared—emergency freezer meals, board games, moving a bed into the living room, indoor recreation, and modifying daily routines to conserve energy. Financial pressures, including selling a house and a retiring specialist, are mentioned. Throughout, the hosts emphasize community support, encouraging listeners to share tips, visit the Lyme Voice website, and join the Facebook group. The episode ends with a standard medical disclaimer.
Chapters
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 Welcome to Lion Voice.
I'm your host, Lincoln Sanchez, and this is my dad, Aaron Sanchez.
Hello everybody, my name is Aaron Sanchez. Welcome to Lion Voice. This morning I have— well, it's morning for us as we have 5 kids and a full house. Sometimes I have to wake up very early to do my recording, and Lincoln is usually an early riser, so I I have him as my special co-host this morning. Say good morning, Lincoln.
Good morning.
How are you doing today?
Good.
Are you ready for a super cool episode of Lion Voice?
Yes.
I hope everybody else is too. Today, uh, we have friends of ours. Philip and Emily have been friends of ours for the past, oh, couple decades now. I actually knew them as teenagers when I was helping them, or when I was helping with the church, uh, with their youth program, and they were both teenagers in that youth program. That's where I originally got to know them, got to watch them fall in love, get married, have kids, uh, and unfortunately got to watch them go through Lyme. And they, uh, that's what we're going to talk a little bit about today because Philip and Emily actually had a really big part in helping Sarah and I in our Lyme, uh, journey. As we go into this episode, one of the things I'd like to highlight is, uh, just how Emily and Philip approach life and how they approached functioning with Lyme. It's inspiring just to hear their attitude. And yeah, they're getting the tar kicked out of them. But Emily's attitude during the whole thing is just very inspiring and encouraging to me, so I hope it's encouraging for you as well. So without further ado, here we go. When were you first diagnosed, Emily, with Lyme?
In 2011. 2011, yep.
2011.
And you're, we are located in New Mexico, Rio Rancho, which is a suburb of Albuquerque. So did you contract, do you believe, do you remember a time that you contracted the tick bite?
I'm pretty sure when I was 16 on a family vacation to Virginia.
Okay, so you came back, did you remember getting a bite, a mark, or a rash?
No, but we remember ticks on us all all the time.
Oh yeah.
And we were camping out there, so they were always on us and we were always getting them off, but I don't recall an actual bite.
Okay.
And your sister has Lyme?
Yeah.
And do you think she got it at the same time? Yeah. Okay.
When you went on that trip, did you know of Lyme? Did you know to be cautious of it?
No, I had zero knowledge of Lyme. I don't even know if I've ever heard of it before then. Right.
So we have a special relationship with Emily and Philip because, because of Emily was actually diagnosed about what, a year, 2 years before we were?
Yeah.
And it was because of Emily's influence in our life and her just the relation of same symptom-like issues that we kept having, she kept encouraging us to talk to her doctor. So Your doctor, her name is Hillary Schlinger, and she's here in Albuquerque. And how did you find her? I mean, so you got it— so tell me your story. You got— you started getting sick.
Well, in 2009 I had a major surgery and I crashed then.
Okay.
And then so we started just investigating what went wrong. We thought something went wrong in surgery.
Oh, like a botched surgery?
Yeah, so we started just really looking into that and seeing what was going on.
Yeah, it took you a long time to heal.
Yeah, it took me forever.
A lot longer than it should have.
And I got infections from it. It just didn't go as smooth as possible. And he was a great doctor and really helpful, but my body just wasn't reacting proper to it. And so we started looking into it, and then I kind of gave up after about 2 years, or that was 2009.
And what were your primary symptoms during those 2 years?
I was basically bedridden at that time, and like, I had surgery, so of course I was bedridden from surgery, but then I just could not get back to normal. I couldn't do normal things. I just always felt nauseous. Really weak, a lot of body pain. Probably at that time that was about it, but just couldn't get better. Right. And so we were just constantly thinking it was surgery. Right. After a while, I had a neurologist tell me it wasn't surgery because I had it healed finally. So they were saying, no, it's not— has nothing to do with surgery. So they started looking into other things, and then we kind of gave up. I was sick of going, and we just gave up. And then I got pregnant, so then I was like, oh, I better find out what's wrong before, before this baby is born.
So tell us a little bit, if you don't mind, a little more of your history. So you and, you and Philip are married at this time?
Yes.
Um, you've—
we have 3 children.
Okay, and so you're pregnant with your fourth? Fourth. Okay.
Yeah, and so just being pregnant, I was really motivated to find out what was wrong and, you know, what it meant for the baby. And I was on heavy medication at that time.
So that's all because of the surgery?
Um, well, and symptoms.
Oh, so you've already started down the— yeah, one prescription, a Band-Aid fix that, another one to fix that.
They were all medications for symptoms, nothing for healing.
She was on sleeping Medicines, pain meds, big time.
Yeah.
Yeah.
And, um, anti— did you, did you get on anti-tremor meds even?
No, not— I hadn't had tremors yet.
You hadn't had tremors yet.
So all these symptoms, and then, so what was the— do you remember the moment where you thought, hey, I need to look into Lyme? Or how did, how did you hear the word Lyme?
Um, so because I was pregnant, I was desperate for a solution, so we started back up. We started with a neurologist first. No, I started with a GI first doctor, and luckily I was having— I didn't know how to pee, and so I told her that, and I didn't, I didn't even think to tell her that. Like, I wasn't going in there thinking that was a symptom, but as she was talking to me, I said, oh, another thing is, is I'm not quite sure how to go pee. Like, I have to give it a lot of thought.
Now, this is something that had developed, or you've always had a problem?
No, um, well, it probably since surgery, so for like 2 years.
So since surgery, okay.
Yeah, and it was like I had to give it so much thought. And so right when I said that, she just stopped what she was doing. She said, you're in the wrong place, this is neurological, you need to see someone else. And she actually called a neurologist to get me in right away. So that was really nice of her to take me so serious.
Yeah.
Um, I need to look at my records, find her name, because that was amazing. I mean, we didn't get that anywhere else. So she sent me to a neurologist, and, um, you know, they did nerve tests that I failed at and stuff, so they knew something neurological was going on but didn't quite know. So they just said MS is the problem.
Yeah, and they scanned her and stuff and found no—
well, I had spots on the brain but not lesions.
No lesions.
So So at this point they were pointing you towards MS?
Yeah.
Well, yeah, he unofficially diagnosed me with MS and he basically said, we'll wait for lesions to appear, but as of now we're saying MS.
So, but they didn't give you— obviously, did you start taking MS meds or—
No. Okay. Um, almost like that same week, um, we went to do a live blood analysis. I don't even know where we found our name.
So when we went to the blood analysis, we knew what Lyme and Bartonella looked like. Oh, we knew, and it was from a movie that we had just watched.
Oh yeah, under our tree. Yes, Sarah's mom told us to watch this documentary. She thought— she had watched it and thought, gosh, this is the stuff Emily tells me that's going on with her. So I watched it, and so we had knowledge now of Lyme, and her symptoms were so similar that I thought, wow, that's crazy. But because we had MS in our head, yeah, we were like pretty sure it was MS, and we were kind of going with that. Um, so we went to a live blood analysis, and she had seen all these corkscrew bacteria in my um, okay, in my blood and stuff. And she was showing us, and so she's the one that said, I'm pretty sure it's Lyme. And then she ran some blood work. And but, um, that scan was pretty interesting because like 5 times she said, oh, I've never seen that before. Oh, I've never seen that before in my blood.
Yeah.
And so it was, it was kind of funny because I was like, wow, she's been doing this so many years and She kept seeing things. I had a bacteria shaped like a flower. She had never seen that. She had no clue what it was, but you had some polluted blood.
You know, that brings up a really good point because I've heard other people who cannot get treatment because they do not have a negative— or they do not end up with a positive Lyme test. We've talked to people who haven't done the antibiotics and stuff because they keep getting negative tests, but we've also heard from a lot of people who have done the blood analysis analysis that you can see the spirochetes. And so that's a really important factor even to remember because, yeah, that we all know anyone who's been in the Lyme world for any amount of time knows, knows the issues with the testing. And yet, yeah, that's a really good affordable option. I think it costs, what, under $100? Yeah, to get your blood.
And it was, it was fascinating. She told me a lot of information during it.
Yeah.
So what did that trigger then? So all of a sudden you now have a, what, a tentative diagnosis?
Yes, because she did run blood tests. I did test negative for Lyme, but, um, I tested positive for co-infections and like Bartonella. And so she was like, well, you can't have one without the other. And, um, My CD57 showed that it was pretty fishy, that I probably had Lyme. So just things. So she directed me to Hillary Schlinger. That's how I found out about Hillary.
Okay. And a CD57, for those of you who don't know yet, is in layman's terms like a marker for where your immune system is at. So typically people with Lyme have below the 60 mark, and you want to be up in the above 100 and up into the 200s and 300s, I think, is how far it goes.
Right.
But, um, yours was really low.
Yeah. Yeah, I, I don't remember the actual number now.
I thought you said it was like 19 or—
I think it was in 20.
Oh, okay, okay. It's still so low.
Yeah, yeah, not good.
Not a good, not a good number.
So that— so 2008, if I remember the timeline right, is— you said 2008 is when you got your diagnosis.
No, that's 2009.
No, 2011 I got diagnosed. 2009.
Oh, you had already been sick for 2 years.
Yeah, is when I was really— but looking—
and that led to my— was the— I'm sorry, go ahead.
Looking back, I could see symptoms before then. I just didn't know they were symptoms.
Right, and that's my next question, which I think is an important one, is how long were you sick before the diagnosis?
Well, really sick for 2 years.
But before that, like even in high school, I was about 16, I thought I was lazy. Like I kind of just thought, oh, I'm kind of lazy because I didn't want to do things. Um, you know, we'd go out and play a baseball game or something and I'd be so tired, and so I just felt like I was out of shape, lazy. I had no idea it was a problem, like something was going on.
Right.
Yeah, I remember when we were dating, so that would be a little—
like when I was 19.
Yeah, 19. Um, you were getting vertigo at one point.
Yeah, I had vertigo for a long time before.
I do remember that.
Yeah.
Yeah.
And we didn't— nobody could answer why or how or what was wrong with her.
I would, I would always have—
that was before kids even—
spells of random vomiting. So I just thought, I just thought all those things were normal. Like, right, like, oh no, I— yeah, I thought I was lazy. I just, I felt like food bothered me, so I didn't eat very much. And so just things like that. But looking back, you can see that they were symptoms, right?
Yeah. And one of the reasons I really want to bring that out, because I want this show not to only go out to the Lymeys out there, but also to their families. And that's the reason that we actually got together today is because many times at church, like we said, Philip and Emily have been our dear friends for the last couple decades. And, uh, um, but we've often talked, especially Philip and I, and Philip and Emily and I and Sarah, just how much pressure is put on us, uh, the, the healthy spouse, um, or the spouse that's technically in charge of, of caring for the house when the, the, the mom is sick, when the— when you have the Lyme, um, who's no longer able to take care of— you have how many kids now?
4.
4. And we, and we have 5.
So yeah, there's just a lot of logistics of getting meals prepared, getting laundry caught up, and those are, those are really, really hard things when— yeah, to keep all those boats sailing.
Lyme, and Lyme is so intense. It is such— it will floor you, and it's hard for the patient. But no one, you know, no one really taught— no one was saying, hey, you've got to watch out for the husband who's about to be immersed in this horrible, horrible event. It was gonna rob his wife to the point where you can no longer even have physical contact. The slightest touch causes so much pain to the person with Lyme that they can't. So there is no intimacy, there's no hugging, there's no cuddling even, and how hard that can be on, on the spouse. So that's one of the reasons we wanted to talk. Philip, during all this time when Emily is going further downhill, further downhill, you try one thing, you think it might be— I mean, how many supplements did you guys try that were supposedly the cure answer?
Oh yeah.
Or like, um, you know, whatever, uh, vinegar. If you drink vinegar, apple cider vinegar, apple cider vinegar, which it is a healthy thing, it's a good thing to do. But do you remember those days where it was like one supplement after another, one more event after another?
Oh yeah, and, and, and the, the feelings that it brought, like, uh one thing after another felt like, oh, it was bringing, uh, some light into our house. It was making life easier for Emily, right? And it was probably just maybe a placebo effect, um, but, uh, yeah, we tried tons of stuff, tons of stuff.
Well, you get to the point where even a placebo effect is welcome because any break, right? Yeah, give me 30 minutes of, of just a break and I'll take it, you know?
Right.
Absolutely. When the first trouble started happening, it was an inconvenience to me. I— it was like, okay, she's sick and I'm gonna do the right husband thing. But there was a point where it got where I was like, this sucks, I don't like this anymore, and I'm pissed at you for it. I mean, you can go there or you can stop and you can say, you know what, this is my life, my wife, my responsibility. Do you remember having a point like that where you had to make the decision? You know, You had to.
Real— you're still married. Yeah, real specifically, I remember getting home from work needing dinner and not being ready to figure that out for myself. Like, always, always, she's always been there to think about dinner, to prepare dinner. And when I get home and she's like been in bed and it's like "Sorry, I can't do anything," I would lose it. It was like, I cannot handle this. Like, we all need dinner, and you spent all day in bed. Surely you could have thought of dinner or something.
Yeah, like taking something out of the freezer, anything would have been great.
And yeah, I remember having lots of, lots of angry spats just about dinner.
Because food is very important.
That's funny you say that. I've— no, I totally identify with you because dinner has always been really important for me too. As part of my upbringing, when I was growing up, it was dinner time, everybody came together every meal— or not every meal, but every— at least dinner. And that was a central part of our entire family existence. So it was probably— you come from a similar family. Yeah.
Well, and here's what— here's what family members need to hear, because it's not First of all, in order to like get food out of the freezer, you have to be able to walk and breathe at the same time. You have to be in a right— like mentally, you have to be in a place where you can problem solve and figure out what you had, because you're not in this healthy state where you run to Walmart on Mondays and you plan your meals out. I mean, that's what healthy people can do, and I used to function that way, and then I wasn't a healthy person anymore. So you have to learn to work with what you have in your pantry And that's usually inconvenient and it usually takes longer. And then it's not even that. Like, for me, even if I could get dinner together, then I couldn't sit at the table and have dinner because I didn't have the strength or the stamina to do those multiple things. I could sit at dinner or I could make dinner, but I couldn't do both in one night.
Yeah. Yeah.
So it's so complex because it's not even about the dinner. It's about having— being able to sit up at a table, being able to clean up afterwards. All that stuff, it's so complex because of how that works, right? Yeah, yeah.
Oh yeah, it became, it became— I mean, the way I coped is basically, uh, everything was reactive. Uh, if I got home and there was no chance of her creating a dinner, eventually I started buying emergency dinners. So we had taquitos in the freezer, we had Hormel chili in cans, we had I mean, stuff that I could just not think about it and make it really easy. And, uh, that helped a lot. That helped a lot. We also went to my parents a lot to hang out, but honestly, to get a meal.
Yeah, no, yeah, you're absolutely right. Yeah, yeah, it gets to that point.
Yeah, I remember going to my brother's thinking, you know, if we hang out, then we'll probably get dinner, we'll probably get lunch. And that, that's how that helped a lot too. That really did.
Yeah.
So, but then you arrive at places where you can't go hang out.
Yeah.
How did you guys cope with that? Like, I know that's, that's a big thing because even the sicker I got, he didn't want to go places by himself with the kids. And I'm like, oh, I don't, I don't, I don't want you to miss out on these things just because I can't be a part of it. But for him emotionally, that was a big drain to keep going places without me.
Yeah, Phillip, a lot of times I would encourage him to just leave me because, well, plus it was a burden off of me. I'm like, oh good, they're gonna be fed. Yeah, so it was a huge burden off of me if they did leave. But, um, he— yeah, he hates doing things without me. Yeah, I mean, we, we do everything together. I mean, we grocery shop together. That's what we've done our entire marriage. And so it, it's hard for us— we don't— to do stuff separate. He does, um, a lot separate now, which is hard, and he hates it.
But, um, but honestly too, uh, it's come down to accepting. There's been tons of grieving. There's been tons of— yeah, my reality is different. Like, I just— everything's gonna be harder. Um, well, like, I remember driving down the road one day and seeing some girl running for exercise and being floored. Like, that is not reality to me. Like, girls don't run. They just sit in bed.
Yeah.
So anyway, grieving a lot, knowing that, um, a trip to the zoo can happen, but it's gonna be really rare. Uh, I probably never— well, maybe not never, but I won't get a hike with my wife anytime soon, if ever. And so I had to grieve about stuff like that. I had to realize that—
mourn the loss—
life, yeah, life has just become less active, period. We are now a house family who hangs out on couches and beds.
Yeah, right? Yeah, so true.
Yeah.
Yeah, um, yeah, recently I looked at a photo album of Caden, so he's 10, and it's the zoo, we're at the aquatic center, we're all— all these places, and that's our photo album. And then if you look at Cheyenne's, who's 6, all of the pictures are from my bed or couch. And yeah, I thought looking at it like that was tragic, of seeing what Kaden experienced— not that he remembers, he was a baby— and then Cheyenne's experience, you know, just seeing your life drift away in a photo album like that was really hard to see.
Especially, I mean, you guys have always been like this. You're involved parents. You're concerned. You're active in your church. You're active in your community. You're active with your kids. We worked really hard to build the family that we have. We set out to have more than one kid, and we established our house and set rules into place. Lyme destroyed all our hard work. It destroyed the life that we worked hard to protect. You're a stay-at-home mom. Sarah's been a stay-at-home mom on purpose because we wanted our kids to be home with the mom. Also happened that we had Lyme and you didn't have a choice anymore. Like Philip is saying, it is a real grieving process and it should make you upset and it should make you emotional that you are losing this. And to lose and to show emotion and to be upset and angry about the loss that we're experiencing is okay. It's what we do with that anger is where we end up having problems and where it transfers into your marriage and so on.
But I remember one of the things I told him, and this was as I was like going way downhill, I felt like, you know, you, you give each other grace and, you know, you're trying, you're making the best, especially, you know, as you're, you know, because you become sicker and sicker, you have to start modifying everything, and that there is that loss process. But I felt like for him, because I needed so much help to just do everyday function I tried not to ever argue about stuff that I knew, like, that was related to me being sick. Like, if I wanted to go do something but I wasn't able to, and then he reacted in a certain way, I tried to just let that go in the sense of, like, knowing, you know what, we're not fighting. It's not him and I. This is the illness. Like, it's creating this vortex of, yeah, loss and grief and And but almost trying to like protect myself from that to a certain extent because I didn't want to argue about an illness. I didn't want to, but yet you do. You have to come to those places where you can tell yourself, yeah, this— there's loss here.
Yeah, I loved being active. I loved, uh, going to parks. I loved walking and running and bike riding and snowboarding, riding dirt bikes. I remember wanting to teach Emily a lot of that stuff and, and then yeah, that all came crashing down. That's not totally an option anymore, and it might be someday. I mean, we still have hope. We still have hope there, but—
And I know for you, even when I got sick, I remember one time you calling and saying you know what, life is just going to be different. It's not less, it's just different. Instead of going out and doing things, you sit and you play cards. Or so explain, like, how— at what point do you guys just kind of like both separately come to this place where you realize, okay, we just— life has to look different?
Uh, I probably got there way before Philip. No offense, but I am just a suck-it-up type of person. And so, you know, if, if I'm not feeling good, I'll just say, well, let's build a tent and I can sit on the couch in the tent, you know. Like, I'm just the type of person that will make, you know, fun out of whatever we have. And so I try my hardest to do that. And so it keeps us going. But, um, I don't even remember the question.
Yeah, you've been, you've been really good with, uh, making this stuff fun, being creative in it. Where my mind always went to like, well, let's go to park, or let's have a picnic. Yeah, let's do something fun like that outdoors or whatever. You've been really good at bringing, bringing it all indoors.
Well, and every time he'd say let's go to the park, I'd get my feelings hurt, even though he didn't insult me. But I would just feel like he was putting this pressure of something he knew I couldn't do. And then I'd have to feel guilt of saying no. So it was like, wow, I'd have to like force myself not to be mad or be hurt. But him saying let's go to the park would just— it would hurt my feelings and I'd get angry and I, I'd just say, what, you know, are you trying to hurt me? You know, but he wasn't. It was just a simple request. So that was hard too, to learn to back up and say, wait, he's not, he's not hurting my feelings.
But yeah, we, um, I mean, we started getting indoor stuff. I mean, I remember thinking, I will never have a TV in my bedroom.
Oh yeah, like, we think we said that.
Yeah, I hate the TV. I hate it, right? And, uh, but no, I mean, if you can't do anything but lay in bed, then eventually we got a TV in our bedroom, and, uh, eventually we got a laptop to watch stuff in whatever room was convenient that day. And we got board games. We have closets of board games.
And, um, but it also takes energy to play a board game.
Yeah, so that was also very just dependent on what the day— well, and when I was really sick because I was, um, pregnant, was the pregnancy was horrid, um, we put a permanent bed in our living room so that I could be a part of the family but still be in bed.
That's such a great idea.
You know, that's inconvenient having a bed in your living room, but it changed everything because mom was always around in bed still, but in the living room. And that was— that made a huge difference in everything. You know, I could still be with the kids.
And yeah, yeah, at first you were— you were closed up in your bedroom and we were going on with life playing with toys in the living room or whatever.
And I was getting very depressed because I was alone all the time in my room. So we brought the bed in the living room.
Yeah, those are some things that I wish we would have done that just didn't occur to me because even I didn't understand, and I really didn't understand even why I was so different. Like, I had to sit like in a bed with my feet up. So even to sit on the couch, you know, for a couple years I could sit on the couch with my feet in weird positions But then I just got to the point where I couldn't even sit on the couch without like being propped up. But we didn't, you know, we didn't make that modification. Um, but that's a great suggestion to even just, okay, this is, this is where we're at and this is what works for us and it's not going to look like any of our neighbors, right? And that's okay.
Yeah.
Yeah.
And even the kids thought it was fun to have my bed in the, you know, my bedroom was basically living room and It added a fun— yeah, to a tragic situation.
Yeah, they're like, this is fun. You're like, this is tragic.
Yeah.
And I, going back to even the photographs, I have the exact same scenario with my first two and even with Nate. Like, we're out doing stuff and playing and going on playdates, and, and I always worked from home, and so we always had stuff going on. And then with our other two, all the pictures— if there— there's hardly any. We don't have hardly any photos from the last 5 years except for photos other people took, but all of them are from my bed. Yeah, maybe the couch. But, and even just like, the house is a wreck. Like, in every picture, the house looks like a disaster. And I'm like, ugh.
I just remembered a, um, thing that I think my mom said. I don't know. But she said, you'll never— your kids won't look back and remember a messy house. They'll look back and remember a fun mom. And so that's what I think about. I'm like, because I'll be stressed about laundry or dishes, and then I'm thinking their memory won't be of that. It'll be of a fun mom. Yeah, a happy mom, you know.
I felt that same way for a lot of years, but then, because I was sick— I was sick for 17 years before I had a diagnosis. And 14 of those years I had, I had pretty serious issues, but we didn't really know it for those first few years. I always justified, like, I would say I felt like I was constantly lowering my standards in life, in what I expected from everything. Like, okay, I used to think it was important to do the dishes, but I actually don't really think it's that important anymore because if I have to do the dishes before I like have time to play with my kids, that'll never happen. So for a lot of years I used that like, okay, it doesn't matter, we're focused, we're— but then it just got to the point where, I mean, it's hard. It's hard not to look at yourself and think, okay, I'm just being lazy, or something is— maybe I just don't care, maybe I used to care and I don't anymore. Or I think that's just a hard process because other people's influence. You know, you, you don't want to have other people come over to your house when it's completely a disaster, but if you have to wait to get it cleaned up, you never have anyone come over, right? Those are hard things.
Or if you clean up, you're going to be too tired to actually sit there and talk with whoever, right? You can't sit there and talk. And that was a hard adjustment for me, is the one thing You can do one— when we're in the height of it, if it was a good day, you could do one thing. You can get ready to go to church, or you could go to church. You can't do both.
Or you could load the dishwasher, but that was it. You couldn't cook dinner, you couldn't move laundry, you couldn't go on a walk.
Yeah, our heel part might not— I mean, might not be what you're looking for right now. Because we're kind of discouraged right now, and Hillary's retiring right now, so we're in a really bad place right now with that.
You know what, that's okay, because you would not believe the number of people I talked to who are like, yeah, I was okay, and my doctor that I've had for the last 5 years just told me there's nothing else he can do for me. So it is really important because there's going to be so many— there's so many angles, and there's so many ups and downs. And I mean, even for me, I'm in a good place right now, but Nathan isn't. My 10-year-old isn't. And so that, that weighs heavily on me. And even though, you know, we went through drastic measures to be able to go out and do treatment— we sold our house, my parents helped us, like, we used everything we could because I was at that phase where I was dying, I wasn't going to recover— but we were not there yet with Nate. And so we're having to use a completely different tactic with him. And so, you know, that's, that's part, that's part of the ebb and flow that everybody deals with.
Well, Lincoln, what did you think of that episode? Was that cool? Yes. Good, I'm glad you enjoyed it. I hope the rest of you enjoyed it as well. I hope some of those just everyday practical tips were helpful. You know, I'd love to hear some of your your tips. And, you know, just those practical things can help. So we'd love to hear some of your practical tips. Those practical tips, just a little bit here, a little bit there, ease the suffering, ease the pain of dealing with Lyme every day. You know, that can help. So we'd love to hear them. Join us at— on our Facebook page at LymeVoice on Facebook. Also, you can visit LymeVoice.com. There's some of the products some of the resources that we've used. We're gonna keep bringing more and more resources, so if you check back into our store page, you can order them right off of our website. So thank you for joining. Lincoln, would you have any parting words?
Keep up the fight, Lyme fighters!
Good.
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.
LymeVoice 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.
From the creators of Lime 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.
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