006 In Sickness & Health

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.

I made a commitment. I made a commitment to stay with Emily for the rest of my life, her life, in sickness and health, between her and me and between me and God. Honestly, I feel like there's tons of blessings in that. There's tons of good times in that. There's a lot of bad times. There's a lot of bad times.

I know.

There's, there's tons of good times.

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 will live. Hello everybody! On today's episode of LymeVoice, we have a second part to Emily and Philip's interview. Philip and Emily Gamache have been dear friends of ours, and we've got to watch them walk through Lyme at the same time that we were. In fact, they played an instrumental part in our Lyme journey and an instrumental part in just our social circle.

Yeah, we really just appreciate Philip and Emily being willing to come in here and kind of pull the curtain back and let people see what life with Lyme is really like, because it is, it's really unfathomable. And, um, you know, there's a, there's a lot of factors when you don't know how your spouse is going to feel and you're leaving them home to go off to work. That's something most people take for granted, that their spouse and their kids are going to be safe. And when you have Lyme and you don't know how you feel from one hour to the next, those are really scary, tough things that you have to go through. And you know, when Emily was sitting here in the, in the studio recording, you can just tell she's in a ton of pain. And when you talk to her, You know, she, you can just tell there's so much pain and yet she fights through that pain every day to meet the needs of her family, to try and meet her own needs and helping herself get better. And just their, their time here in the studio was really valuable and we felt like it was worth finishing.

Yeah, but before we get to the rest of the this amazing interview, I would like to read our iTunes review of the week.

Alright.

So, babe, this one is for you.

Okay.

This is from Christine. 5 stars. What a phenomenal resource for the Lyme community, plus anyone who's experienced someone with Lyme disease. Thanks for what you're doing. You are so strong. Christine brings up a good point. One of the goals of LymeVoice is for those— for healthy people to hear the Lyme stories and to hear your Lyme stories. So if you know of loved ones or family members that might, uh, that need a little bit of insight into the Lyme world, please pass this along, and hopefully it can be a tool for healthy people as well. So without further ado, let's get into the message.

All right, all right, so we're in the, in the midst of our healed portion of this interview, and we know that you guys have made some really drastic measures measures towards healing. Um, you guys did some things that people might think are extreme to a healthy listener, but, um, are very necessary when you're sick and you're sick for years and years. So tell us, like, some of those big adjustments that you guys made.

Well, first, we, uh, trained our kids to take care of our house, which is kind of Not cool, but I literally had to think of my 7-year-old son as the man of the house when I was gone. He really had to take care of his brothers and sisters with meals sometimes, and we trained them to, to be able to do chores and stuff that we never would have asked them before Emily was sick. Um, but I always had this giant fear of what if I forgot to pick up stuff he could fix, like cereal, oatmeal, uh, sandwiches or whatever. Uh, what it— because a lot of my shopping, honestly, I don't go shopping once a week. I seriously probably go shopping 5 times a week.

Really?

Like, I am always out of stuff, and that's how, that's how it works with me. Like, I can't come up with a clear plan. Most of my stuff is reactive. So I have milk— I don't have milk anymore, I gotta get it. I— so I go on my way home from work, I get milk.

Yeah.

And then, oh crap, I ran out of taquitos, so now I gotta get that. And I seriously— I am seriously at the store probably 5 days a week.

Yeah.

But anyway, um, we got this opportunity to buy the house next door to her in-laws.

My parents. Your in-laws.

My in-laws.

Your parents. Yeah, sorry. At first, moving in with my in-laws or living next to my in-laws in a normal life would have been not the greatest circumstances. They're fun people. They are fun. We like hanging out with them. We would hang out with them at least once a month with family nights and stuff that they did. But, um, When it became an opportunity, our lives had changed so much that it was like— it was like I knew it would be a huge burden off of me.

Yeah.

Like, so we couldn't afford the house next door right away, so we had to— we actually moved in with her parents for 6 months to come up with a down payment for this house. So we moved out of our house. So yeah, we saved a lot of money by not having a mortgage. And, um, those months where we were living with them, even though they're hard because you're living with people and you don't have your space and all that, I had never been more relaxed about my family is taken care of while I'm at work.

Yeah, there's not a fire starting in the back room.

Yeah, yeah, I, yeah, I was not stressed at work that whole time. I was like, oh my gosh, Every— like, they will get every meal. They will not be hungry when I get home. They will have enough clothes for that day. Like, it was amazing. It's the relief that I felt during that time. And then now that we're next door, it's not totally that the same. I mean, we still struggle with meals here and there. We still struggle with laundry sometimes, but I know if Emily's ever really, really bad that day, that, uh, her mom is usually available. Yeah, you know, next door to watch things.

We— yeah, the same thing was similar to us. We're 2 blocks away from our parents, or from Sarah's in-laws. We never had to move in with them, although we were so bad off they kind of moved in with us.

Yeah, for sure.

I mean, not officially, but yeah.

And we— the reason we moved here was because we could be close. Because we just needed so much help.

I had no idea— Philip, you probably remember this— I had no idea how terrifying a caller ID with your wife's name can be when you haven't done anything wrong, you know? Yeah, because it is pure terror. You're like, this could be a good phone call or this could be the end of the world. I understand that feeling of constant fear of a phone call, like your whole world could go spinning out of control and literally your wife could be—

or you're driving to the emergency room, or, or your wife can't drive that day.

Yeah, and it is the evil thing about the whole disease is it breeds chaos. So your wife is no longer able to, um, do what you did, so you do double duty and you neglect changing the oil in the car or that fan belt or whatever. Then it gets down to the point your son breaks his arm and the fan belt goes out. You got a screaming kid. Now you're calling the ambulance and you're going to pay for an ambulance ride. Now it's going to cost you, instead of the $200 copay, now you're looking at a $2,500 copay because you didn't change the fan belt. You know what I mean? Like that, That's a real chaos breed. I mean, that's what this disease does is it breeds that kind of chaos when you're overburdened.

And the, yeah, and the problem is you do, you said it, you're living reactively instead of proactively. Like, oh, all right, we eat food every day, we need 3 gallons of milk for the week. Like, well, and for us, I was the proactive person. I scheduled our events, I coordinated everything, I handled I was organized and I liked to get a lot done, so I was pretty logistically— I could coordinate things. And I remember the years were coming where he was not taking over that role. Like, I remember saying, I, I can't pay the bills anymore. Like, I just, I can't do it. And but that wasn't who he was or wasn't what he was used to doing, so we languished for years in this place of he's reacting and he's trying to put out all these fires. When he's home, he's putting out fires. And, and just the stress that that alone adds. And then you have the financial elements of you're spending money on medical, you're spending, you know, your money isn't your own, your time isn't your own. That's, that's, those are heavy, heavy realities.

I just mean it. Reactive, as I said. I mean, dishes or whatever, I don't have this huge plan to keep ahead of the dishes. Like, if we don't have any more bowls, then I gotta do dishes. That's how it would go. That's how everything— if we're out of socks and underwear, it's time to do laundry. Like, yeah, it's hard to be proactive. It was.

Have you ever stashed a backup pair of underwear for that? Day when there wasn't one to be found?

Uh, sort of, yeah. I have—

I have a spot in my underwear drawer where I keep my, my backup pair.

Yeah, I have a lot of underwear and socks. A lot. Yeah, more than I should.

Just buy more.

Yeah, you end up buying 24 pairs instead of the animal 10 pairs that normal people have. Yeah. Yeah, your mom has mentioned that a couple times because of course her mom ends up doing a lot of our laundry because— and she's like, why do you have so many socks and underwear?

Because if you don't come over and fold them, no one has any.

That's the sad truth.

Um, well, I wanted you guys to talk about like the healing aspect, like what you're doing as a— how just for you, but even as a household.

We did come to a place of deciding, all right, I have Lyme. Move on, you know. We will deal with it, but in the meantime, we have a family. And so, you know, it's more of just, yes, we have Lyme, we're dealing with it constant, but day by day, what can we do to keep a happy home, to keep a happy marriage? It was things like move your bed into the living room. That was for our healing of spirit, you know. So just things like that. Um, we started Fantastic Family Fun Fiesta Fridays. So Fridays is a family time where we— me and Phillip and the kids— we just do really fun things. And it's always different, you know, depending on how I feel. Maybe it's just movie night together with popcorn, or we always just make it special. The kids get to pick their own dinners. We just make it special and it's Fridays and it's— that's brought a ton of healing to family time and our kids look forward to that time.

We talked about our son has Lyme now. Now, do you suspect that some of your kids and—

Our boys tested positive.

Okay.

And our girls tested negative.

Okay. And Phillip, how have you been tested?

I have— they tested my CDC, I think.

CD57.

CD57, whatever that is. Uh-huh. And they said I was right on the edge, like it was negative, but I was right on the edge, so I probably have Lyme, but they're not—

So it's suspicious. They're watching you close, kind of.

His CD57 was not in the high normal range. It was in the low normal range. But, um, I mean, yeah, that's stressful.

We know there's a lot of people out there that state that it can be transmitted by sexual contact. So, but we also know that certain people's immune system are more susceptible to it.

Yeah.

So I haven't got it yet. I need to keep up my immune system. I need to be a lot more proactive than I have been. Like, I need to be juicing with Sarah. I need to be doing those type of things. So, and, and one of the reasons is just actually listening to your story, Phillip, as you've talked about this and worrying about it, and you guys as a family, your nutrition has changed because basically everyone is at risk at this point.

Yeah, and as far as the diet goes, that's mostly to keep a healthy body so that they can be fighting proper, you know, all of the whole family, even the girls, if they're eating right, they're going to have a healthier body and it's going to fight harder. So it's not necessarily to help with Lyme, it's to help with—

Of course.

Just fighting. Right. So, you know, we stopped processed meats. We do a lot of the coconut oil. No wheat or gluten.

Before Lyme, were you interested in this type of thing? Were you— have you always been healthy? Minded, or was it kind of a product of your environment?

It was definitely a product of our environment. We were never like outrageous. We like—

I always like to be healthy. Yeah, I always wanted to, uh, get my vitamins and minerals from my food rather than—

but we would never have like considered like, oh, let's not eat processed meat anymore, right? That wouldn't have been on our radar.

Right.

Um, so drastic changes like that were made just to keep our bodies as healthy functioning as possible.

Gluten. We just noticed when we took our kids off of gluten, I don't know if it was a suggestion by somebody, but it made huge differences in their behaviors and stuff they struggle with. My one son has an issue with digesting stuff and whatnot. So yeah, when we took them off of gluten, they, they were happier too. Not just healthier, but they were happier. They worried about stuff less. Stuff didn't matter as much.

Well, our second son, he does have celiac. So even the fact that he had an autoimmune disease makes him more susceptible to Lyme and everything. So the fact that he does have autoimmune disease too makes us want to keep his body functioning as healthy as possible. And because we took him off of gluten, we took the whole family, and yeah, Kaden made huge changes even though he didn't have celiac.

Yeah. Okay.

Yeah. So instead of just treating the one kid, we just cut it out of our whole house and, um, So nobody's, nobody's like taken care of diet-wise. We're all just the same diet, which I think is nice.

We didn't add in gluten-free. We should do that. We didn't add in gluten-free. We took out gluten.

Yeah.

Because gluten-free stuff is so expensive, but it's also not good for you. I mean, corn isn't good for you. Rice is iffy, you know. So we didn't add gluten-free to our home. We just took it out. So instead of sandwiches, we do lettuce wraps. You know, we don't—

that's a great suggestion.

Yeah, we don't add in.

Yeah, yeah, we don't have meals with bread.

Like, yeah, do you do it like— do you do the occasionally when you just gotta have that piece of toast, or if we're like—

we don't buy it, but we will if we're like out and we're like a burger, you know, usually it's a burger.

But yeah, any of our cheating is at a restaurant.

Yeah, we don't bring it in. Yeah, and so we don't do pastas, you know, our dinners are all based around—

not gonna have pasta anywhere.

Yeah, we'll do spaghetti squash spaghetti, you know, just— yeah, so we don't add in, we just take out.

Yeah, and there's lots of good meals. I mean, steak and potatoes are right, wonderful.

Yeah, right, steak, potatoes, and green chili.

Kids love salad.

So yeah, and that's the thing too, is because we've taken it out and that's their only options, they don't complain about what we serve. They eat everything, um, and they enjoy it because they know that that's your options. It's not like there's cookies in the cabinet or anything like that, so they're used to it.

I think we should talk about like career, trying to juggle a career And like when you can't leave town, you can't go on overnight trips, like some of those career dynamics. And then, but I really want you to explain what you're doing, like where you're at, like with Hillary, like your doctor is retiring. Obviously you've made like some initial adjustments and stuff, but like what's moving forward, what does that look like? Um, Do you start looking out of state? Do you, you know, a career?

There's really nothing there for me.

Yeah, I was—

I mean, I just go to work and work and come.

I hide everything from him, like, because I don't want to disturb his sleep. So I will leave the bed if it's horrid, and I will go lay on the shower floor for hours because we have a tankless water thingy. Yeah, so I always would— yeah, hide everything from him.

It hasn't changed my career.

When you say hiding, when you say hide everything, hide your— the way you're feeling, or like what's happening in the house, or no, all of the above?

Yeah, all the above. Like, he already had so much burden on him that I knew he had to get a good night's sleep in order to work, because if he lost his job, I'm really screwed. So really, it was a selfish thing. But so if I was— felt like I was dying, I would leave and just go in the night. There were times when I thought he's gonna wake up and find me here dead in a shower or in a bathtub or in the living room floor, because I wasn't gonna dare wake him up because I knew he needed his sleep. And he I needed him functioning to the best he could be functioning because I couldn't be, right? And so I just would do it alone, um, so he would get his sleep. And then, I mean, he's gotten mad at me so many times for being too strong or absolutely, um, saying, oh, I can do it, you know. He gets mad because he's like, no, you can't. It's not all on you. But I just knew he had to bring home the bacon, so I would.

Philip, do you feel like you said you just go to work and come home? Is that because you don't have the time to invest into work, or is it just because home consumes enough energy that—

No, I've never, I've never thought a lot about career. I always just wanted a job that I would go to and put in my time and come home. And I've always thought about home more, always. So it didn't change when she got Lyme. So I just, I don't really think about work at all when I'm at home, and when I'm at work, I'm thinking about home. So yeah, so yeah, that didn't change much. Um, I try to, I try to better myself at work as much as I can.

But, um, but work has to stay in a tight little box though. Like, you can't— I mean, can you leave for an overnight trip or two?

Oh, no way.

Yeah, yeah.

But I— yeah, that's not required at my job anyway.

It just so happens his job was perfect for our situation. I mean, he gets home at 3 in the afternoon. Which is huge.

Yeah, that is huge.

So half the time he's on shift, I'm sleeping because he goes in at 3 AM. So I sleep for half of his shift, and so do the kids.

Wow, that's amazing.

So we just happen to be so blessed in that area, which is not normal for most.

Yeah, yeah, yeah. For us, it was a huge transition because I worked, I worked a lot. And he worked and he had several different side businesses that would take him out of town, and we've had to just give all that up.

Yeah.

I mean, so yeah. I think it's really important for Emily to talk about what she's doing, what her, like, protocol is at this point, and even the fact that Hillary's leaving or retiring. Like, there's so many people who literally do not have a physician in their state, or that they have access to. Yeah, yeah. And you really do need a team of people. Emily, why don't you, you guys, and from both your perspectives, tell us really where, where you're at physically, how many years you've been doing antibiotics, um, and what, what's the next phase for you on your journey to healing?

Uh, well, we've been treating for almost 4 years, treating Lyme. 2 years of that was on antibiotics, and now I'm on a break from antibiotics. I'm still constantly up and down. I'm way better than the beginning of this journey, but I'm still constantly up and down.

Yeah, I wouldn't even say necessarily your health is way better. We're just better at it.

You're just used to living a different life.

Well, yeah. Yeah, we're way better at it for sure.

Because you're still in a lot of pain a lot.

Yeah, I'm still doing pretty bad, but I mean a lot like the tremors and stuff, those, those are pretty under control. So there are things that are much better, but as far as functioning like a normal person, it's— I'm far, far, far from that. Um, and yeah, my doctor's retiring this year, so that's horribly tragic.

Does she have solutions for you? Does she know who to pass you off to?

She is training someone currently who is in, um, who is right now doing eyelash training, um, and then she's gonna be working with her side by side in her office to get her ready. But I'm not sure if I'm gonna go that direction just because now I know that woman's new. Yeah, so that's scary to me for sure.

So while you were on antibiotics, you guys are treating your kids herbally? Have you done antibiotics with the kids?

No.

Okay.

Um, especially for Caden, his GI is so messed up, I don't want to even go there.

Um, that's why we're on a break of antibiotics for you because it really messed up your gut.

And well, then we switched to injections to get away from my gut.

But, um, you've been doing 4 years on and off of oral antibiotics but no IV, right?

Right. Okay. No, um, only 2 years of oral.

Okay.

And then I did like a while of injections. Antibiotic.

Okay, what are— where's your pain levels at?

I don't— that's hard. Um, well, if I'm doing something, like 1 to 10, it's at a 9. Um, if I'm just sitting here, it's like a 5-ish. But, um, yeah, if I'm doing anything, I'm being stabbed to death the whole time I'm doing it. But, uh, And yeah, I just can't get that under control for some reason.

Yeah, you're writhing in pain at night often.

Yeah. Oh, and at night it's pretty bad. But, um, yeah, so I toss and turn a lot. But yeah, so yeah, we don't really have a plan moving forward, which is kind of scary.

Yeah, we're at a beginning of a transition. We just lost our doc. Well, we're gonna lose our doctor.

We're gonna— we have one we're looking into We do. And she's a neurologist. You know of her.

Yeah.

So I'm excited because most of my symptoms are neurological. So that's exciting, but I don't know. We'll see because she's big into Byron White and I've done Byron White unsuccessfully.

Unsuccessfully?

Yeah, for a year I was on Byron White formulas and—

I don't know what Byron White is. Tell me what Byron White is.

He's a doctor who who developed a formula, several formulas, um, tinctures, different herb tinctures.

Okay.

And he claims to heal Lyme pretty quickly. So I'm not— I mean, I don't know how quickly, I can't remember, but I mean, his formulas are very good, but I was on them for a year with no success, so I don't know where I'm at with that. We'll see, but I know doctor— the doctor we're looking into focuses a lot on him, so it's kind of scary too to go into that.

Yeah, and that stuff's all herbal, so it's not covered insurance-wise, and it's pretty expensive.

Yeah, and that's the other thing is I feel like Dr. Byron White's formulas may be overpriced. My doctor now, she got the ingredients off of Byron White's formulas and kind of made our own tinctures. And they were like $20 a tincture. Byron Whites are usually around $100 a tincture.

So that stuff is so subjective too because, you know, it depends where you are in your own life, where your Lyme is at, to see how effective things are.

And Yeah.

And I'm pretty wary when people claim to be able to heal Lyme like, like it's easy.

Right.

I'm pretty wary. And so, I mean, maybe they found the secret, but you know, you have to go in pretty carefully about that kind of stuff.

What I've heard referred to is that Lyme attacks your weak— the weak parts of your genetics. So, or whatever. So if you've even an old injury Um, it was really interesting with Sarah when she was in her treatment, her bite spot, uh, as she was going through the treatment and she was coming towards the end of the treatment, the bite spot flared up and a spot of eczema actually showed up on the bite spot and it stayed there for months.

It's still there. I still— my original like 2-inch little lesion that started started off, and turns it— because I had the actual bullseye rash, it's still right there on my left thigh. The day I started treatment, it just hurt. My left hip and my left thigh were just excruciating for days and days. And I remember thinking, oh my gosh, you know, here I am 18 years later finally attacking the beginning of it. But yeah, it's like a little—

I don't know. Yeah, and I don't know what the medical reason for that is, but it's almost like the little spirochetes are on that one spot saying, and this is our spot, you can't have it, and holding on for dear life as your body is trying to remove them. Yeah, I don't know. Yeah, so old injuries can— the point of that was old injuries can spark up, and, and that's where the Lyme attacks. Even in, you know, like if you're more susceptible to allergies, your allergies get really bad, or you present allergy situations where you were never allergic before and now you're exposed to Lyme and all of a sudden these genetic, you know, you're allergic to cats where you weren't before, or milk, or gluten, or da da da. So because each part of us is individual and there's individual treatments for each part of our ailments, if you don't address those individuals, you can't attack the Lyme itself. So you can't— there's not a one pill. There's no one pill that works for Emily. There's no one pill that works for Philip, Sarah, or me. I mean, because we're all individual, we have to have this regimen that gives us 3%, that regimen that gives us another 20%, removing gluten, that's going to give us the remainder, and hopefully If we can put enough puzzle pieces together, we can gain our life back, or what our new life is with our new Lyme ingredient.

I feel like too, um, there's so many tests that are so important to know what treatments are better for you than someone else. Like, I have a double mutation in my gene Had I not tested for that, I wouldn't know that my double mutation means such and such. I need way more B12 than most people. There's just these blood tests that are crucial to knowing how to treat you specifically with other things as well.

Yeah, yeah.

And that's just a process of reading things online, your doctor's input, and just, yeah, piecing it together. As we roll towards our conclusion, what, um, give us your quote. What's your inspiring quote that you're attached to at the moment?

Well, there's two things that I say over and over throughout my days. Uh, one is, um, I think it's It's in Philippians and it's, uh, don't worry about tomorrow for it'll worry— or there's enough worries for today. And in my life, that's even like hourly. Like, it says tomorrow. Yeah, but honestly, it's like, don't worry about tonight because right now this morning has enough worries about it. Um, and my other one is, uh I can do all things through Christ who strengthens me. And even though I feel really weak through everything, everything has been getting done like that absolutely needs to, you know. And those are the two things I say over and over and over and over.

Yeah.

Mine's in Ephesians, and I think it's 12:1 and 2, but I'm not certain on that. But it's talking about running the race with endurance and getting, you know, to the finish line and despise the shame. Like, there's just all this chaos around you, but you have to run the race and finish with endurance. You know, it's going to take endurance, but just finish strong, you know, just keep going.

Don't give up.

Yeah, keep going. Just keep swimming. Just keep swimming. That could be another one. But it's just, you have to, you have to have it. Keep running.

Yeah, well, in, in— I was athletic at one time, like Philip, and I used to run marathons. And then in a marathon, you talk about hitting a wall where you come to a point where your body is physically done. Your mind is turning against you, and it is only literally your only thing left holding you in, in place on that, on that course is your willpower. Your mind is trying to tell you, stupid, this is dumb, you're in pain, your body— because after mile 20-something, your body starts to break down. Your body's not designed to go that far. It's an amazing athletic ability to run a marathon, and I appreciated that. But the wall is very similar to what we experience with Lyme. You get to that point where all reason, your body, all your emotions, everything tells you to quit, and literally the only thing you have left is that willpower that says, just keep swimming, just put one foot in front of the other, just keep moving.

Yep.

And I'd like to encourage family members out there too. You never know when a phone call to someone is gonna be that exact word, that exact encouragement they needed just to get the ball moving enough for that day to make it through the next couple hours.

And I have a friend who, she harasses me all the time, so her texts She'll text me something just joking, snooty or dumb, or— and that's like, that's what got me through so many little hard spells of just her harassing me. And you know, it's a stupid relationship, it's funny like that, but yeah, it's just you need those people in your life putting a tiny break in the reality.

Yeah.

Oh yeah, that was true for me. I mean, I just Desperately, I sometimes couldn't even pick up the phone, but I just wished like somebody would send me a text or call or, you know, just so you know, like, okay.

Yeah, it's, you know, and something I didn't understand until we were multiple years down the road. When you're— when you as the Lyme patient and feeling like words here if you need to. When you as a Lyme patient, you're in such pain and such agony and you're struggling just to survive, you literally do not have the brain function, the brain power to put the sentence together to say, can I— can someone please call me? You can't even make that decision, even though it's almost like more of an emotion that you wish somebody would contact. Because wouldn't it make sense that if you wanted somebody to call you, So you would say that?

Yeah, you're not, you're dying. I mean, you are. If you're not treating it, if you're not fighting against it, you're dying. And so yeah, you know, there's a reason people—

Well, and that was my mistake as a husband too, is I often saw you struggling and didn't ask the probing questions because I didn't know that you didn't have the power to form those questions. So even as a friend who's watching someone out there, you may not know to ask those questions because you just figure, well, if they need something, they'll tell me. But when that person is so sick— and I missed a lot of opportunities to help you because I didn't ask, or I didn't text, or I was at work and I didn't check in.

Yeah, and when you're— when you have to ask for help for everything when you literally can't get up enough times in a day to go refill your glass of water, you, you pick and choose. You're like, okay, I know I'm gonna have to ask for a glass of water in the next half hour, so I'm not gonna ask for help to get that book I'd like to read while I'm sitting here. I mean, you just start— you negotiate in your head every, every movement, every task. And I mean, my kids constantly were going and getting things for me and stuff, but it is. You, you're not living in the same reality. You are in a, in a very isolated, lonely place because you live from appointment to appointment hoping that, hoping that that next appointment will tackle a symptom or that some insight will come in through blood work or something, you know. You're just, you, you're living in a really isolated place. Yeah, even if people are around you, because you can't— you can't be involved, you can't be engaged on the same level. So yeah, it's hard. Uh, yeah, you know, I just wanted you guys, both you and Phillip, just to talk to other spouses out there. I mean, we have other— we, you know, it's not all women who are sick. There's definitely, um, a lot of men who are in the same boat. So what would you just say to the spouses in particular who are living with a spouse that has Lyme, or any chronic illness for that matter.

Oh yeah, fibromyalgia, cancer, diabetes, etc.

Yeah, I mean, especially when there's pain, cuz pain— lots of people don't feel well, but pain adds an incredible harsh element to your life. And it does, especially when the pain with Lyme, you know, it's, yeah, it's not just the pain of getting up off the couch, it's the pain of getting back down afterwards. So, what would you guys—

Pain is used for torture.

Right. Yeah.

It takes everything in me to be nice to people because I'm in so much pain that, I mean, it takes all of my effort to be nice.

Yeah.

And that's awful. Yeah, and sometimes because he's the safest, then I can unload and be mad at— mean and nasty to him because he's the safest.

Yeah, and even a healthy person goes through those things where you're frustrated with your spouse, but I always felt like I had to minimize everything because I needed so much help with my illness, right, that I couldn't be like, oh, By the way, I have, you know, something else I want to talk about. It didn't matter, right? You're just like, oh, I need help getting a glass of water every half hour. And yeah, so I mean, what advice would you guys give to spouses who are in the same boat but not as far along?

It's really just a commitment for me to be married to Emily, you know.

No, that's important, Phil. You made a commitment to be married to her. You stood up in front of family and friends and loved ones, and you testified, and you said, yes, I will be with this woman for the rest of my life.

Yep.

In sickness and health. Dang it, I wish I read that a little closer. No, just kidding, that's just a joke. But you're one of the few people— I mean, this disease Okay, we all know how hard marriage is.

Yeah, marriage is hard for healthy people.

Throw in this crap, throw in this pain, forget it, we're doomed. The fact that you and I still have a marriage together and a happy marriage.

Yeah, well, I'd like to say that. So my advice would be, uh, uh, I, I made a commitment. I made a commitment to stay with Emily for the rest of my life, her life, in sickness and health, between her and me and between me and God. And honestly, I feel like there's tons of blessings in that. There's tons of good times in that. And I would never walk away from that because There's so many good times in that. There's a lot of bad times. There's a lot of bad times, but there's, there's tons of good times.

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

So you guys still exist, therefore you have a You have not been defeated by this fight, by this disease. Good job. Thank you, Lymeys, for checking us out. Please keep in tune with us. We're going to be bringing lots of new products, lots of new ideas. Check us out. Rate us on iTunes and Stitcher. Feel free to contact us. Come to our website, LymeVoice.com. Check out some resources. Put your inputs. If you have a question, a concern, a problem, please put it down. Contact us. We'd love to talk with you. Maybe we can come up with a solution together. Maybe I have a resource. Maybe I have a question for you. Thank you again. We'll catch you next time.

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. Lion Voice 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 Lion Voice is provided as is without any representations, warranties, expressed or implied. Okay?

Okay.

Lion Voice makes no representations or warranties in relation to 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 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 missing as a household while simultaneously empowering you to keep fighting. Little Bite, Big Trouble is available today at Amazon.com.