March 19, 2024 • 85 mins
This Week's Episode:
AJ & A.Rae invite you to sit and chat with them about chronic ailments and what that means to them!
Podcast's Introduction:
Do you enjoy company and want to laugh while learning, especially when talking about life's lessons?
Join AJ and A.Rae as they explore the multi-faceted world of health and well-being! No experts on the matter in terms of formal education, but life's experience has taught them a thing or two.
No claim do they make in being all knowledgeable or perfect-
AJ and A.Rae strive for:
- Learning and growth
- Healing, to overcome and be empowered
- Laughter and joy
- A supportive community
AJ and A.Rae state,
"We are two best friends having a conversation and want to include you! So, grab your beverage of choice, pull up a chair, and get comfy! Cheers to womanhood!" ~With love, your hosts
Connect with us:
Facebook: facebook.com/2mamasafterdark
Email: 2mamasafterdark@gmail.com
Instagram: instagram.com/2mamasafterdark
Website: https://wandermusings.my.canva.site/#connect-w-us
We left the kettle on!
Resources and gems for this episode:
Please review on listing posted on our blog, https://wanderingmusings2mamasafterdark.blogspot.com/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to the wandering musings of AJ and A-Rey.
(00:04):
To Mamas After Dark.
Sit back, relax, and enjoy.
Welcome everyone.
(00:26):
Welcome!
Hello!
Someone's awake.
I got up twice today.
And...
Before we were...
I don't know what I'm trying to say.
Are you awake?
Yeah, I think so.
(00:48):
I'm really excited.
Before we started recording, I was working outside.
Because it's been calling me for the last couple of days and weeks off and on.
You know, off and on the snowstorms.
And it's sunny.
So today...
(01:09):
Yeah, today...
Well, it started yesterday because I, without knowing...
Or without planning on it, went over to my dad's and he was like,
Oh, we're going to prune this.
And I was like, Oh, that would have been nice to know so that I could bring the appropriate things.
But that's okay. I came home.
(01:31):
We had to get some other stuff.
So I came home, grabbed my pruning shears, my automatic ones.
That use the battery.
And pruned it.
And I took one of the clippings because I was like, Well, maybe I'll get a rose bush out of it.
Maybe not. We'll see what happens.
(01:52):
I love it.
So then today I was cleaning up some of the stuff that I planted.
You know, the moonlight planting that I was talking about.
Yeah.
Thousands of recordings ago now.
Just before winter.
Yep.
I was cleaning that stuff out because the things are starting to sprout.
(02:15):
The new growth. So I was trying to clean out the gross stuff.
Sorry.
I just watched my elbow.
This daylight savings thingy is getting to us already.
And that's only been a few hours.
Oh, and I planted, I planted one of my rose bushes.
That I ran out of time for before winter.
(02:38):
And so across our fingers, it looks like it should pull through.
I put some rose feed in it too.
Just in case.
The other one looks like it survived a little bit better.
So the pot that I have in the backyard that has all the weeds in it.
(03:01):
We're going to dump that and put new soil in and I think I'm going to plant the other one in that one.
It's the bright pink one.
It's the light pink one.
With the purpleish center.
So.
Our gardening talk a few weeks ago got under your skin.
(03:26):
Oh.
Dreaming about planting things since winter. Come on.
I love it.
But yeah, we got lots of projects to do.
You're never idle.
And if we get it done, great.
And if we don't get it done, we'll try again next year.
It's true.
(03:47):
It's true.
So what you drinking?
Ah ha tea!
It's time to spill the tea.
What are you thinking?
What are you drinking?
I am drinking a chai tea.
You know, tea tea, chai tea.
I found this really cool sugar free one that you just add like whatever milk you want to it.
(04:17):
So and I was like, I'll try it out and it's really good.
So I went back to get some more and the place because I got it at the Amish store down here.
And the place that I got it out at, they didn't have any more.
I was like, oh, other people liked it too.
You know, I have found if you find something you really like, that's the story of your life.
(04:39):
You go back to get it and it's no more.
Yeah.
So I think I'm going to see if it's cheaper online.
I hate to do that because I really love that store.
But ten dollars for this little tiny thing is a lot.
But I wanted to try it.
Did you ask if they're going to have it in stock again?
(05:01):
Oh, they still have the tag there and I would assume they would if they saw it go like, yeah, you know.
But who knows?
Who knows?
What's you drinking?
I have cucumber water and I also am having a tiny little treat of a ice cold Dr.
(05:22):
Pepper.
Don't tell my son I stole his Dr.
Pepper.
You bought it.
I found it in the fridge this morning.
I was like, oh, ha ha.
Nice.
Nice.
Good.
My dad loves Dr.
Pepper.
(05:43):
And so every time we go over, he has a Dr.
Pepper.
He's like, are you going to go to the Maverick?
So we went to the Maverick on Saturday and we got him a large fountain drink.
And his face lit up.
I love it.
It was really cute.
(06:05):
It was also really cute when he found his donut on the kitchen counter.
His face was just like a like a little kid and like pure excitement.
There's my donut.
Was it missing?
I think he forgot about it.
Oh, that's so cute.
Like I think they bought it and then he got doing other things.
(06:28):
And so he thought maybe he already ate it.
And then he saw it.
He was like, oh.
That's the best.
When you forget you've got something and then you see it or find it later and you're like, oh my gosh.
That's awesome.
Right.
Well, I apologize for my sniffling spot and everyone because it's cold down here.
And my bicep met.
(06:49):
That's fine.
I can't hear it.
So it's fine.
Cool.
Excellent.
Excellent.
How about you?
How have you been?
I've been all right.
I'm enjoying the warmer weather.
I have my window open yesterday or my sliding glass doors.
(07:11):
I think I'll do it again today.
Nice.
My son was complaining about it.
He comes downstairs wearing nothing.
He likes to walk around in his skivvies.
And I'm like, dude, put some clothes on then if you're cold.
Yeah.
(07:32):
Kaden does that too.
I do the same thing.
Like grab a blanket or something weirdo.
No, it's fine.
Maybe it's a boy thing.
I think so.
He doesn't like to be wearing clothes.
I think it might be a sensory thing too.
That makes sense.
I'm like, well, if you're cold, put something on.
I like the fresh air coming through.
(07:53):
But then Kaden will go outside in a pair of shorts and a t-shirt with a snow storm.
So I'm like, you know what?
I don't know what's wrong with you.
Yeah.
It's been a busy week, but not too bad.
Nothing unusual.
That's good.
Surviving.
Good.
Living.
(08:14):
Living life.
Awesome.
So on to our musings.
Yeah.
Let's listen to some musings.
Quotes, poems, short stories, inspirational, uplifting news, and of course, tippy-dippy
astrology.
Then.
What you got for me?
Hold on.
My notes just turned off.
(08:36):
Oh no.
I got them.
We're good.
I'm excited.
So I have a quote.
Yes.
From a person named Chris Vos.
And I didn't know really much about him.
But he, after research, he's a CEO, inspirational speaker, and author.
Yeah.
(08:57):
So you can go down the rabbit hole.
I'll have it on our blog.
Because we don't have space in our episode notes anymore.
I find that sometimes we run out of space and then we have to change what we give.
And I just want to make sure everybody has all of the rabbit holes to go down.
A follow-up blog post with all of our resources.
(09:19):
Yeah.
So I've been releasing it.
I think I released it the first time last week or the week before.
And I'll release it on the same day as our episode comes out on our blog for everyone.
Just side note.
But anyways, the quote, the long-awaited quote.
Empathy is not about being nice or agreeing with the other side.
(09:44):
It's about understanding their feelings and perspective, regardless of whether you share their position or not.
I really like that.
Yeah, me too.
I think empathy is misunderstood sometimes.
I agree.
Or mistranslated.
(10:05):
And that really ties into our main topic, which we'll get into later.
But that really ties in.
Well, I think sometimes people think it's more like sympathy.
And yes, they're close.
But empathy is feeling what other people feel.
Again, even if you don't agree with it, you understand and you feel what they feel.
(10:31):
Whereas sympathy is just being like, oh, I'm sorry.
But you don't really feel it.
Because you're okay.
You know what I mean?
Yeah.
But I thought that went really well with today's topic.
Let me get to that.
Yeah.
Thank you for sharing that.
(10:53):
You're welcome.
So on to our hippie dippy astrology learning.
One of my favorite.
I'm going to apologize because it's been a while since I've written this.
And so I've read through it like the beginning of last week to remind myself and to see if I needed to add anything to it.
And then I forgot again.
(11:15):
So bear with me because I had all the pronunciations worked out and I don't have it anymore.
But we're going to talk about lunar rocks and I wrote down lunar rocks, baby.
I'm sorry.
(11:36):
I love it when she does things like that.
You're fine.
So it's an an or a.
Okay, hold on.
And ortho site and ortho site is a calcium rich white rock, which is believed to make up the ancient crust of the moon.
(12:00):
It is made up almost entirely of plagioclasts, felt spar, a common lightweight light colored mineral on Earth.
It is an igneous rock, which means it's cooled and solidified from hot melted material.
This mineral floated toward toward the surface and formed an or though site and ortho site heavier mineral sank and produced the denser interior of the moon.
(12:32):
The primitive lunar crust was made was the primitive lunar crust was most likely made up of an ortho site.
We knew we were going back to school.
So I bring it up because I'm going to share the link. Everybody can journey.
(12:54):
A long journey to the lunar touch rock. If you go if you go online, you can see the National Air and Space Museum, and they have it on exhibit, where you can touch a piece of the lunar rock.
Oh, that's cool.
(13:17):
Yeah.
The lunar rock really does rock baby. Yeah, it does.
That's cool. It sure does.
That's awesome.
Thanks. But I also when I was waiting for you to get online to this morning, because I was running late.
(13:39):
Yeah, you know, it happens. Um, I was looking at the alchemy of herbs book that I shared with everyone before. Um, and I was reading about the ashwagandha herb, and I was like, Maybe you want to talk about that, but then I was like, I haven't really researched it so I don't want to talk about it.
(14:00):
But I will research it and then tomorrow, when we release our blog, um, post about it. Well, actually.
Yeah.
Tomorrow, tomorrow when you're listening.
(14:30):
I don't know when some date.
There is some date that you'll be paying attention to this.
I promise I'll wake up before we end our conversation.
Um, I've been gardening. Okay, I don't have, I don't have a brain right now I've been gardening.
(14:52):
Um, so I was, I was reading about it and it kind of ties in with today's topic. And so I thought, hmm, maybe we'll talk about this but the ashwagandha can be translated to mean smell of a horse's urine or sweat.
I know that sounds so delightful.
(15:13):
Oh, but, but,
um,
the plant properties can do the following.
Adaptogen anti inflammatory antioxidant anxiolytic. That's for your anxiety.
(15:35):
Afrodisiac immunomodulator cardio protective.
Um, because in the western world, it is kind of new to us, and it gives the ability to both strengthen.
(16:05):
And those who are tired and calm those who are stressed, in the Jus.
And I was like, I need some help.
I'm all showing it to you.
Put it in our blog, I think we'll actually do it like we'll release this and then we'll do it the following Monday.
(16:28):
That way y'all know what we're talking about and you're all like they're weird.
Maybe you are thinking we're weird, but hopefully we're just funny.
Clearly after today, after this, you know, the last five minutes, yes, we are weird. I'm just kidding.
At least I am.
What is in your tea today?
(16:50):
Just milk and chai.
Lactose free milk.
You know.
Anyways, cool.
Your turn.
Thank you for screaming.
Well, just really quickly, I want to share a good news article that I found.
It is entitled Hug Therapy Helps Premature Babies Develop As Volunteers Sit In For Moms Who Can't Be There.
(17:18):
And it just caught my eye because I thought it was so cute.
It's in Argentina.
It's a, so it's for premature babies that have parents, either mothers or fathers or both, who are absent and they can't be with the premature babies either due to work, substance abuse, incarceration, even if they're injured or even have unfortunately passed away.
(17:49):
Because of accidents.
There's a team of volunteer huggers who take two hour shifts holding babies in their arms to benefit their growth so they aren't left too long in the machines.
And I just thought that was so cute.
Okay, sign me up. Where do I go?
(18:11):
I know, right? I would totally, if they had that here, which I don't know, maybe they do, but.
They do.
I would totally do that because who doesn't love snuggling cute little babies?
Because you know they have the science behind the skin to skin that helps the babies.
And in the article, it says, hearing them.
(18:34):
And then when we're all done, we'll take them home.
I mean what?
No, officer, my bag was always this big.
Oh, that sounds awful.
Sorry, I just meant that as a joke because they're so cute.
No, it says hearing them sigh, hearing their little hands unclench and seeing their skin turned from beet red to a more natural color is a sign enough for most humans to understand the baby is benefiting from that human contact.
(19:07):
So they said that this hospital welcomes 50 volunteer huggers at a time to spend time hugging premature born babies.
Right now, it consists of 49 women and one man, and it said, go on son.
That's what the article said.
(19:28):
And there are 200 applicants on the waiting list so they only allow 50 at a time.
Yeah, it's if you're maybe, maybe, maybe check around if your hospital doesn't have something like that.
See if you can start it, maybe give the idea.
(19:49):
On the same page today, I would, I would totally do that.
That was my good news article of the week.
Yeah, I like it, and it kind of is in the same vein as what we're talking about today.
You know, I didn't even do that on purpose. Splish splash. We're diving into the main topic.
(20:14):
Yeah, I mean, it's a positive side of what we're talking about.
Yeah, which is which is chronic illness.
It's a little bit ailment, disease, however you want to phrase that. It's a little bit heavier of a topic.
Yeah, it's one that's really close to our hearts because we both have a chronic thing that has changed our lives.
(20:36):
And for the good, bad, ugly, whatever you want to call it.
But and when we have topics like these, we always like to start out with that disclaimer of we are not professional.
We're not medical professionals. We are not any type of professional giving.
We have a degree in life. You know, we're not giving medical advice.
(20:58):
We're not giving any type of advice other than our own personal experience and saying this is what how we are navigating, coping, navigating, and take it as you will.
And we hope that we have. Yeah, research it out. See if it works for you.
(21:22):
Obviously, if it doesn't work for you, don't do it.
Yes. It's kind of how I am. My brain's like, don't do it. It's like when you're like, oh, that hurts. Well, stop doing it.
We just hope that maybe something we say might be helpful to somebody who might be going through something similar. Yeah. Yeah. Yeah.
(21:47):
So to start us off, AJ. Yes, ma'am.
What if you feel like telling us what are you navigating?
I navigate a couple of things. I have chronic pain.
(22:11):
I guess I call it chronic or something like that.
I know. I guess you want to call it technical.
So I have that. And then I also have something called
Meniere's disease. That's for the rest of my life.
(22:34):
What is that? It's an inner ear disorder.
Corruption. It's a it's a inner ear. It's a disorder of the inner ear.
It basically makes it so that if you're in a flare up, it makes it so that you have severe vertigo.
And it's not fun. And so you have to have a lifestyle change to handle it.
(23:03):
And it's not the funnest thing ever, but you know, you handle it.
You deal with it.
So and it's a fairly new thing for me. Both of these things are fairly new within the last couple of years.
(23:26):
And I guess I should say start out by saying that the chronic ailments or chronic illnesses,
diseases are long term health conditions that can have a significant impact on a person's quality of life.
And so they whether or not you have an official diagnosis,
(23:50):
you know, these chronic ailments, they can you can have them as you're listening.
You might be thinking, oh, maybe I have a chronic ailment or an illness,
but I have haven't had it officially diagnosed because for a long time, I didn't think I.
I didn't think I fit into that category because.
(24:16):
We are very fond of this term. I didn't fit in the doctor's pretty little box.
I didn't fit inside their little check marks.
And so I didn't think that I qualified as having a chronic ailments.
But if something is. Which does play into your mental well-being after you think you're not.
(24:45):
Yes, yes. And you're like, oh, I'm not crazy. I know what my body is doing, but that's a different.
Yes. Oh, gosh. We could go on forever about that one.
But you. You deal with these things for so long.
(25:08):
And whether or not you start to assume everybody else is dealing with it.
Oh, OK. Well, if I'm not sick, then everybody else must be going through this, too.
Yeah. Then why did they look better than I? Right.
And to speak on that, it's.
(25:33):
Chronic illnesses and ailments are.
That's what makes them so difficult is because.
It doesn't just because, you know, you have these symptoms doesn't mean this person with the same diagnosis or whatnot is going to have the exact same symptoms.
(25:56):
I'm seeing a pattern because there's a lot of things that we have talked about lately.
That we have said that. Even though we may look the same in terms of having.
A human body and being of the human species, we have to tailor things for ourselves and our families.
(26:22):
That they're not. Just because it's right for one person doesn't mean it's right for another person.
I like what we said in the opening, but to say things simply, living with a chronic illness or ailment ailment.
There we go. Alment. Not element.
Sucks. Yeah.
(26:43):
From feeling like you are constantly drained, feelings that you are broken on top of feeling awful almost always, if not always, one has the pressures of life and the people around them.
I've had judgmental looks and I even recently had someone say something judging to me because I have chronic Lyme disease and it's something that if you look it up in the dictionary or not the dictionary, but the web.
(27:14):
MD or even talking to health care practitioners in the Western world. No offense to them. They're great for what they're good at.
It's there's nothing wrong with you or there's something else happening and then you go through all the testing and they're like, well, there's nothing wrong with you.
(27:35):
Like, obviously there is something with me. I'm not operating at functional.
And it's the they don't fit in their perfect little box. If you don't check mark all the boxes.
You don't have it.
And you're fine.
You're good.
It's in your brain and you're like, no, it's not in my brain.
This pain I'm feeling is not in my brain.
(27:58):
So, like I was saying, I've recently had someone judge me that would know better because they also had a chronic thing but I don't think I'm not one that shares my chronic issues with a lot of people.
You have to be really close to me.
(28:20):
Or I have to feel like I have to explain myself.
And if I don't feel like I have to explain myself, then I don't.
But I had a person who was like,
I wrote it down because I needed to write it so that it didn't sound bad because I care about this person.
(28:45):
You know what I mean. But, um, judging me by a cover I look healthy.
I look like I shouldn't be overweight I look like because I'm active and I do all of these things it's like well what's your problem my problem is my body doesn't function.
I'm healthy, that it should.
(29:07):
Because of my experience with Lyme disease and having it for so long.
And I will circle back.
I promise.
It was so long without having a diagnosis because all of the main chemistries and blood work came back as, oh you're completely healthy for so long that by the time I did go to like a natural path.
(29:36):
And I was like, oh, I'm healthy, I'm healthy, I'm healthy, I'm healthy, I'm healthy.
And then I realized I had a surrounding that we had to kind of filter through and be like, oh you had, at some point, Lyme disease with your EPS and bar and everything else.
(30:02):
So I went into that but this person pretty much called me lazy, that I was rude.
And that I was being disrespectful and inconsiderate.
And I said you know, I'm not one to go around talking about what I'm going through and I think I learned that from my grandma.
(30:28):
She only told you if she had to.
And I said, but let me, let me explain what I'm going through and I'm not using it as an excuse for anything.
But this is why I don't commit to things. And I laid it out, you know, like, I get triggered by things that I don't always get triggered by.
(30:51):
They're not constant.
They're not like,
for some things it's like, okay, for example, I'm lactose intolerant.
I can have cheeses, I can't have like straight milk.
Kind of thing.
I know that if I have stuff that has it, that's not cooked.
(31:14):
I will probably not feel well.
That's same trigger, right?
I have a glass of milk that's not a specialty milk.
I will get sick.
That happens.
For me, it's I can work outside for eight hours and be totally fine.
(31:35):
Or I can work outside for 30 minutes and be down for the count for the rest of the day and then the day after.
Because I have symptoms that include brain fog.
So that's why sometimes when we're talking, I'm like, I don't even remember what I was trying to say, or I don't remember the word.
(31:59):
And it's also those moments where you're like, when you're meeting somebody new or or whatnot, you're like, I feel like I might be judged because they think I'm an idiot.
I don't know what I'm talking about.
You know, so like brain fog is something that I go through.
(32:21):
Lime fibromyalgia is pretty much where same symptoms of fibromyalgia is just most consistently happens when you're triggered.
So it's not all the time that you have all of these aches and pains, but it's most of the time you have at least in my experience.
(32:42):
I at least have them in like dole, like a dole egg that I've learned to live with.
And I think there's other symptoms, but those are like the two that come to my mind right now.
But yeah, so I explained to this person, I said, you know, I have all of these things that that may or may not trigger me.
(33:06):
So that is why I don't say, hey, for this deadline that you're imposing, I may or may not have it ready.
It's how I answer it.
And I know that might be very inconvenient, but that's how I have to live kind of thing.
(33:30):
Stress is a definite trigger, though, and I think that is for everybody's chronic things.
It's at least a pattern that I see in people that I know to have chronic ailments.
That stress is definitely very hard on them.
(33:55):
And then at the very end, this person was like, I can see that you have a lot on your plate because I also brought up like my grandma passing.
You know how it does affect me even maybe even a little bit harder because of my chronic ailments, because, you know, I'll be thinking about her and of course really sad.
(34:16):
And then I haven't done this in a while, but like I'll be crying pretty hard.
And then I feel like, oh my gosh, I have to throw up, you know, and then everything else just falls apart.
It's to the point that at least spot knows like if I am very upset, he'll be like, you have to calm down or you'll get sick.
(34:41):
So, yeah, as.
First of all, I want to know who this person is so I can go give him my piece of my mind.
It's a conversation conversation we had before and you know if you think okay.
I don't like this person.
I have as a race friend, I watched her get diagnosed with Lyme disease, and it was very difficult getting her watching her be, I guess, Miss Miss diagnosed.
(35:19):
Cast aside, cast aside ignored.
What sort of looking for.
Just the doctors would be like, whatever, you know, for for a long time years.
Oh, you need to lose weight.
That was one that came up.
(35:40):
You need to lose weight and I said, you know, at the very beginning of my journey, I worked out six days a week, I was at 140 pounds, you can't tell me that I need to exercise.
And that is the reason why I feel like crap because I haven't been.
I haven't been because I hurt, I hurt a lot.
(36:01):
You know, and.
Yeah, I had a lot of people.
That are health care providers that were like, oh, you're fine.
Like fatigue.
The first time I brought it up.
(36:23):
The doctor pretty much told me, well, you're young and you'll grow out of it.
I was like, I'm sorry. What? Yeah. Well, you have young kids and you're working 40 hours a week. And I'm like, and I shouldn't be like sitting down for five seconds and falling asleep.
(36:44):
Yeah, you're, you're just in my early 20s. Young mom, you're tired. It's fine. You'll you'll you'll get better.
Yeah, it was a lot of be like, we're sitting here almost 20, 20 years later and I haven't grown out of it yet.
It was very infuriating to watch.
(37:08):
That happen and.
To watch her do all of the things that they were telling her to do and to see it not working to see it make it worse.
You know, just, it was awful and to have that helpless feeling of I don't know how to help.
(37:30):
And to see the change when with that diagnosis finally came and then the slow changes of the lifestyle that you've made.
On my own without a doctor's help.
I mean, I got a natural path to do. She's the one that diagnosed me. But even then she kind of cast me aside because her treatment for making me very sick to.
(38:01):
And instead of finding alternatives.
And expensive to.
And very expensive.
Yeah, this was out of pocket and it was like two to three hundred dollars.
Thing. Thank goodness I could get my blood work done.
(38:25):
Three because I had already paid out of pocket, but yeah, so it wasn't working and to do the other stuff that she wanted me to do, I would have had to pay like a thousand bucks and I was like, I cannot do that.
I cannot do that and have everybody eat because at the time my kids were still in.
(38:48):
They were were they still in daycare. I think they were still in daycare.
It was just like that towards the very end of that, you know, like, and I was like, that's like a payment for them to go to daycare.
And I had to have them do a daycare because I have nobody else to take them to.
(39:09):
And that is one of the things that's frustrating about chronic illnesses is you're already stressed, tired, emotional about, you know, not feeling well.
And then you're spending all of this money going to doctors and whatnot.
And so you have the added stress of these medical bills piling up.
(39:32):
And so then you're stressed about paying these medical bills and then you're going, OK, well, then I should stop going to the doctor.
And then you're like me where you get overwhelmed by how many doctors appointments you have and all the blood tests and et cetera, et cetera.
And so it just keeps piling on and it does not help your chronic illness or ailments.
(40:00):
And it just it's a never ending cycle.
And I see yours. OK. Your journey has also been very stressful to watch.
And I feel for your frustrations, because being a person that's gone through it, it's like, I know how you feel like sometimes just looking at a person.
(40:23):
That's the nice thing about finding, I guess, if you can put a positive to it, right, because I'm a person that does that.
The nice thing about finding other people who have chronic things that they're going through is that you can just look at them and they know.
They know you don't have to say anything else and just be like.
(40:44):
And they get it. And that was a nice thing about the three of us, one that she wasn't ready to talk about.
And I understand that was that we could just look at each other and, yep, I feel you.
Go take a break. Do whatever you need to do. Go for a walk.
(41:05):
Go. I had multiple times that both you and Nettie told me to go home and I was trying so hard because I had already gone home before.
And this is before I had, you know, the what's it called again? Why? Where I could go.
What? Yeah, before I could before I had the health plan where I could leave if I needed to.
(41:30):
Your 9.5 job? What are you talking about?
I can't remember it's called that on my brain. Insurance? PTO? Insurance.
Yeah, like kind of like PTO. But what's the doctor's plan that says you can go home?
Oh, FMLA. Thank you. But I had the continuous one. I didn't have it.
(41:56):
Yeah. You know, because I could go if I needed to, but I work if I needed to.
There were several times that they were like, girl, you need to go home. And I'd be like, I can't drive home.
I can't I can't get home. So I was blessed that I don't know if you I think you took me home, too.
I'm sure we all did it for each other. Yeah.
(42:19):
Or if I can make it home, I preferred if I can make it home because I didn't want to ink.
That's the other thing that's really stressful when you're chronically ill is you don't want to inconvenience anybody else.
Oh, yeah. 100 percent.
And then you feel guilty that you're not going to work, you know.
And so you sit there and you're like, girl, you've got to stop or you're not going to get better.
(42:46):
But I think since taking myself out of that stressful situation, because it was stressful.
And then we had all the politics on top of it, the nine to five.
Sure. Yeah, you can say from everything about that particular job,
(43:12):
which I really loved.
Don't get me wrong. I really loved that job.
I just couldn't handle stress from everything because it was making me sick.
And I recognized that I needed to get out of there.
And then from the other job that I had after when things started to get toxic, I had to I had to leave.
(43:33):
But we were going to be moving.
And then that fell through, which is good, because that's when I heard or learned that my dad had MS and we needed to be here.
So things happen for a reason, but I have noticed significantly a difference of not being stressed out.
(43:56):
Because even if I get to a point where I'm triggered to where I have to take a down day, it's only for a day.
And it's where I can still do things in between.
And it's not because before it was days and I had to be in bed. Yeah, it was. I have I was going to say I've noticed that your flare ups or what you want to call them.
(44:20):
I call them flare ups, my triggers are way, way less frequent.
They're not as bad to where that we yeah, you need to stay in bed or down for the count.
(44:41):
The scariest time for me.
Was when I was still in the house, the other house.
And I was called it. I was like, no, I can't say that. And thankfully, Nettie was down the road.
(45:04):
And I couldn't walk to my bedroom.
That was the scariest part.
And I literally had to have spot.
I like wrapped my arms around him and I he had to walk me down to my bed and I laid there.
And then Nettie came with alternative ways.
(45:28):
And I bring up.
To get things under control. This is back when I still had on my lower back those veins that would show up.
From I think those are from the bio films that I've been reading about.
But they I haven't had those show up in a long time. I'll get pain there, but I haven't had those.
(45:53):
And I'm always like, are there veins there?
Because then then I know how bad it might be if I don't see them.
Then I know and I know you've seen them before because I've had you put.
Back when we were working together, I was like, I really just need somebody for me.
You know, kind of thing. And.
(46:15):
Yeah, that was the scariest. I was like, oh, my gosh, I.
I can't not be able to walk like I have to be.
And something's got to give. And so it was a really good day when.
You know, I had quit the second job, the job after we worked together.
(46:36):
I put in my two weeks and then.
When that came up and it looked like we weren't going to be able to go just a little bit before.
The end of my two weeks.
I was I just I kind of had a little breakdown because I was like, if I don't go, then I probably should stay.
(46:57):
And he was like, you don't have to go back to work.
And I was like, oh, I see you.
I mean, I have a hard time not.
I have a hard time being vulnerable.
In terms of. We only have a one income, and so if something happens.
That scares me.
(47:21):
But at the same time, I'm able I'm able to be doing the steps to help me heal and to help me minimize my triggers that I don't even know about sometimes.
And I think you do a wonderful job because.
Like I said, you're doing even a year ago, there's a huge difference in you and.
(47:47):
And I am so proud of you and how far you come in and taking your health.
Under your control.
In the best way that you know how and.
I think it makes a huge difference because having a chronic element or illness or whatever it may be is not easy.
(48:09):
At all.
And.
And some of the treatments, and I know this has happened with you, some of the treatments have other side effects that you're like, is it worth doing.
Yeah.
I even know, and I don't want to share too much because it's her story to tell, but even with Nettie, like there are things.
(48:34):
She doesn't like to be on a whole bunch of medication, so she'll try to cut out as much as she can and have certain things for just when it is, and I've done that.
Okay, I have this in my arsenal.
If, if I'm not feeling great, if it's so, so bad, I can do this.
(48:55):
I'm in the exact same way that I get, I get to the point where I'm like, I don't, like I said earlier, I'm so overwhelmed by doctors, doctors visits and being on these medications, I'm like, okay, I'm going to do everything I can to stay off of them and only when I need them.
It does get very overwhelming.
(49:18):
And there's well and, and those things play with your chemistries, I mean they're good to a certain point, but they play.
Excuse me, they play with your chemistries, and then it changes and alters other things and so that's like, when you're doing your herbal stuff.
You need to know what it interacts with, because a lot of medicines are based off of the natural world and we've synthetically made them, or we've empowered, like we've put more to it, you know.
(49:50):
And so if you're, you're already on a blood thinner and you take a herbal thing, whether it's a plant form, or a powder or whatever, and you mix it and it is another blood thinner, well then you're going to have problems right.
Or, if they're counteracting each other, you know you're going to have problems so it's really good to make sure and I think that's what we're trying to say in the very beginning, make sure you're researching things, make sure you're working with somebody who is knowledgeable
(50:25):
about what you're going through and how they can counteract each other or react to each other.
Yeah, do you think that
you've come to terms with your chronic illness yet, or do you think you're still trying to work through accepting it.
(50:50):
Okay, this comes into, because I feel like I've come to terms with how I have.
I feel like even just recently have come to terms with the fact that it's dawned on me, let's say it that way, it has dawned on me that the thought of health, complete healing, back to when I was young.
(51:20):
And before having all of it.
I was going to be back there. It's the same thing as mental right after you've gone through an experience, you'll never be the same person you were before.
And so, I have come to terms with the fact that I will never feel a body that won't have someplace in it, a pain, whether it's dull or not.
(51:55):
And it has come to me that it is okay.
I'm okay with that.
I just ask for more good days than bad, more good moments than bad, because I want to live my life and I want to interact with people that I love and care about.
(52:17):
And I can tell when I'm getting overly stressed because I get overly agitated and moody and I try really hard not to be.
I try to have as much open conversation as possible, as possible with those that are around me.
Like, and I've taught this to you guys, because somebody shared it with me, about how they were reading and that their sister needed a way to describe when they had energy or didn't.
(52:52):
And so I just talked about how many spoons and now you all talk about how many spoons you have because it's so much easier to explain.
And I know you have it right written down so you can paraphrase how you want.
But from when I was just sharing it to people, it explains how many energy bars I have, especially if you're talking about with kids.
(53:14):
Use video games, you know your health bars.
Those spoons are my health bars, and I can wake up in one day and have, let's say start with five spoons and have those gone in 30 minutes, or I can wake up one day and have two spoons and they last all day long.
(53:35):
And I just go through my life, you know, so having a way, if you don't want to talk about spoons, make it something else, but having a way to communicate it to the people that need to know.
Is so important and it helps navigate it so much better.
So much better.
(53:56):
My kids they, they, they joke, oh you're always tired and I'm like yeah, that's my reality now. That's my baseline.
Now it's a good day if I'm at least just tired and not exhausted, or to where I'm like I'm done. And I've, I've been able, and I'm grateful that my family is okay with the fact when I say I'm done.
(54:20):
They respect it because they know I'm done.
And they watch out for me.
I think one of the hardest things is trying to have my son understand that is, yeah, some days are better than others and I have this energy I'm like okay let's go do this or you know I have more energy to even just do things, but even then
(54:43):
you have to consider.
Just do things at home. And then, all of a sudden, your spoons are gone, or the next day, or even the next week. You have no energy and he's like, why, I haven't done anything.
Oh wait, that was like from three weeks ago.
So, yesterday you why yesterday could we do this but you know today you can't explain it I just, I physically can't you know and it's so frustrating.
(55:14):
He now has a, he now has a chronic illness. And so I think, yeah, I'm hoping that there's a little bit more understanding happening, and maybe you could sit down and say, now you know when you feel this way.
That's, that's how I may not look at because I have learned to navigate that part and still be able to function because of necessity. Right.
(55:41):
Life goes on, it doesn't turn off.
You know you still have to do things my bills are still do on the due dates that they're do.
So, maybe just having that short little conversation of, you know how, when you go through this.
This is what I'm doing and you know how like yesterday you had all of this energy and you're all over the house be be be be be be be be be.
(56:05):
And today or like I just want to lay down and sleep.
That is the same.
One of the biggest blessings for me, living with a chronic illness is, I get to work from home now. So I'm not using up all of my spoons in the morning getting ready to go to work driving into work, walking into work, I can preserve my energy.
(56:31):
Well, and you don't have as much stressors from outside horses. Yes.
Being at home. Yeah, I think in the beginning you know for even four years ago.
My life, our life was so different than it is right now and I think that has definitely taken some of the stress off of me.
(56:53):
I'm able to manage my symptoms and I don't have flare ups as much as I used to know triggers for me.
One of the hugest triggers and it even says if you look up what I have it says stress is one of the triggers summertime I do not eat, you will find.
(57:14):
I don't hear from me as much in the summertime because each is one of the biggest triggers for me. I knew to. Yeah, heaps. Yeah, all of us. It sucks. All of us. We don't do so well in the summertime.
Pressure changes fatigue, you know all these things.
I'm always like, oh, I feel better. And you guys are like, that's because we come alive in the winter time.
(57:40):
I mean I hurt you know I don't want to go outside.
Feel the yucky I'm going to puke all summer long.
Well, and, and for me I don't feel like I have to puke but I do feel like all of my life force and then eat that.
Breathe in and taste it. Um, that pulls all my energy out. So I try to do things in the very beginning of the day and the very end of the day.
(58:10):
But I came up or I found this, this quote of what it's like, and it sums up a little bit of what it's like for me, living with chronic Lyme disease, and it's when is Lyme disease considered chronic.
And patients typically use the term chronic Lyme disease to describe the cluster of symptoms that started after getting Lyme disease, and that persists, despite having received of course antibiotic treatment, or whatever treatment you might be going through, which has been deemed
(58:48):
curative by the infectious disease Society of America.
I say it, because that is a Western approach to what is chronic Lyme disease, as it says, it's a cluster of symptoms that haven't gone away after treatment, so people say that they have.
But when I was the person that couldn't walk down the hallway.
(59:15):
According to everybody else was okay.
So, if you're going through that.
Know that you're not alone and know that you're not psycho.
Never. That there's something happening. Even if it's a phantom thing that is happening, it is your reality.
(59:38):
Which is okay to seek and never stop fighting for yourself, or for someone around you that you think you that is struggling never give up.
I don't think, I don't think you.
And I say you would be in the same place that you are right now if you hadn't come along to Nettie and I, because we were like that's not right you should be going.
(01:00:04):
They. I am forever grateful for you guys because you guys pushed me literally picked me up and took me to appointment sometimes.
And fought for my.
You're my voice, picked up the phone and said nope this is not right she needs to be seen.
(01:00:31):
Or we went to your, you know blood draws because just needed somebody to sit with you.
Or, you know, we always.
Yeah, that's the nice thing about finding people that have been where you are.
And that needed to, you know, I said fine for my, my story, I said fine to the people that were like you needed to do this and you should do that and it's because you don't work out and it's because here it's in your brain and all of those things I said fine, I will go
(01:01:00):
elsewhere, I got a diagnosis, it was very nice that I went elsewhere, I'm sorry that I couldn't continue doing it because it made me sick.
And it was too expensive to do alternatives to it.
But just knowing what I was going through and putting a name to it. Sometimes easiest for the best thing.
(01:01:21):
Even if you know it's a terminal thing.
Right.
Obviously I haven't gone through that yet.
I hope I don't go through that yet.
But I watched.
I watched my grandma go through it. And she, when she got her diagnosis of.
She made a decision.
(01:01:42):
She said you know, I could live for a couple more years and be sick.
Or, I could live quality life.
Or, I could live for a couple more months.
Or, however long I'm supposed to be here.
And go peacefully.
(01:02:05):
But she was also like 87 years old.
But what I'm saying is that sometimes we have to make those decisions.
I can keep going and banging my head on the wall.
And have people tell me that I'm crazy.
Or, I'm crazy.
Or, I'm crazy.
(01:02:27):
And tell me that I need to do these things.
But not give me a how to do those things.
That was the most infuriating.
Okay. You want me to do this.
You want me to do this.
How do you want me to do this?
I don't know.
I just paid an office pay for you to tell me that I'm psycho.
(01:02:48):
That is in my mind.
How do you want me to do this?
Well, and I'm going to be out here getting beaten up by someone with some
kind of portraits on the wall.
And it's a very frightful sighting experience for me.
It's cool and I'm really passionate about my week.
(01:03:11):
Yeah.
Like what do you want me to do?
And I feel challenged to determine what exactly I want to do from here.
I'm going to be doing a lot of
work on this.
But if I update, then it helps.
If I take time for myself and slow
If I take time for myself and slow
down.
This is something that's really hard
for me to do.
(01:03:33):
And I'm getting a little bit better.
Because I'm a doer.
You give me a stack of things I will
go through it as fast as I possibly
can.
Like a work.
But anyways, moving on.
I'm going to be doing a lot of work on
this.
I'm going to be doing a lot of work on
this.
(01:03:55):
But I have found if I take the time
to be like, you know what, it's okay
if my best is 60%.
If as long as I'm hitting 60%, then
I'm hitting a
And I know that you've struggled
with that as well.
And are struggling with that.
Being tentative to commitments
and specific events and engagements.
And I'm going to be doing a lot of
(01:04:17):
work on that.
So,
we'll make plans.
You be
Nettie.
Hey, let's plan on doing this.
But if anybody doesn't feel good, we
know that we can count out and
nobody's gonna how many birthday
celebrations have we canceled.
I'm like, you're the president.
(01:04:39):
And do we care.
No.
Because we know how hard it is
for us to do that.
We know how much we have beat
ourselves up
to do that.
To say I can't do that.
It's why
with people that don't know I have a chronic
illness that I'm like, maybe.
(01:05:01):
Oh, well,
you have to RSVP. Well, then don't plan on
me. I won't be there.
If I have to RSVP because
I don't know if I'm going to be
there or if I'm going to be there.
I'm not going to be there.
I'm not going to be there.
I'm going to be there.
People have been trying to get a
lot of work done.
(01:05:23):
So,
we're gonna have to do this.
I'm like, there's no need to
have to go.
And I'm at least
with a person that understands.
There are a couple of engagements
that I've had to be like, I'm sorry.
I hate to say it that way, but that's where I've had to cut myself, you know, in terms
(01:05:46):
of making sure I don't beat myself up.
I have had to catch myself and say, then it's not worth, it's not worth the pain and suffering
to go through for that person so that they feel good and I feel like crap.
I can't do that.
My body doesn't allow me to do that.
I don't have that privilege.
(01:06:07):
Someone helps and you don't have to put a religious thing to it.
It helps in terms of just again slowing us down and giving ourselves a break.
I've found the benefits of it, especially when I was working in that stressful situation.
(01:06:31):
I was like, I have to take my break.
I have to go somewhere else.
I can't be where somebody will find me for one reason or another.
Yoga, I'm getting back into that and I found why I'm drawn to yoga is because you can do
it the way that your body allows you to do it.
(01:06:53):
And it's not so exersive that it takes out a ton of energy.
Like going for a run, bless whomever does that.
If I am running, you better be running too because bad stuff is happening.
(01:07:14):
Take cover.
Clean or cleaner diets help.
Cutting out excessive sugar has helped me tremendously.
I still have my triggers.
Those are going to be there, but my joint pain doesn't hurt as much.
(01:07:34):
I love dark chocolate.
It has health benefits.
It's better.
Yeah, well it's dark chocolate.
Oh, come on.
It's fine.
But doing it in moderation.
Epsom salt baths.
Those are godsend.
AJ is shaking her head.
Those help so much.
For me, I have to do monthly massages.
Again, this is something that I wish more insurance.
I wish I had a
(01:07:59):
better body.
They only do it if you were in an accident or something like that.
And then they usually have it like you get like 10 visits or something.
I'm like, well, there's 12 months in a year.
That doesn't help me.
(01:08:20):
And if heaven forbid, I need an extra one that month because my body, you know, it releases
all the tension in my body is holding and it breaks up all of the toxins in my, in my
tissues.
Because that's what chronic Lyme disease does.
It goes into your tissues.
It's no longer in your bloodstream.
(01:08:42):
It's now in your tissue.
So that helps.
Of course, a ton of research practice and fail.
Right.
I feel like a scientist.
I'm like, can I try now?
You kind of are.
Yeah, absolutely.
(01:09:04):
Just like, and I put this note in my notes because just because you read, not that I
read this for chronic Lyme disease, but for any serious ailment, sometimes some of them
say like arsenic is a good way of going through it.
Don't take arsenic by yourself.
(01:09:25):
Please don't.
You know, I worked at an infusion center and some of the treatments were arsenic, but this
was controlled doses with people that could help you if something went bad.
You know, please use your brains.
So don't take it.
Is what I'm saying.
(01:09:48):
If it says, oh, try this particular thing.
Um, but it has to be this strand and you find something with the same name, but a different
strand.
I'm just saying I have to put that out.
I think the other thing that's really helped me that I can see in my life is explaining
(01:10:12):
in ways.
And I, and I know I mentioned this with the spoons, um, plenty in ways that people around
me that care about me and that I care about and have those relationships or want to have
those relationships.
That they can understand what I'm going through.
(01:10:33):
Um, and I want you to share that spoon story.
If you, we were kind of running over a little bit, but if you want to send it to me or if
you want to kind of give a paraphrase and send it to me and then I can push it out.
Yeah.
I was going to say it, there's a PDF that I think that we should include in the blog
(01:10:55):
post because it's, it's a lengthy story, but it is a great story about.
And so I was like, is this the spoon reference that you keep talking about?
Cause it is a wonderful summary of, you know, the, it explains how people living with chronic
illness or pain or disability and or disability, um, have this limited energy resource, um,
(01:11:22):
and expend more energy than the typical person on everyday tasks.
Um, and so physical and mental loads.
And so it's a great story.
I liked it.
I read a little bit and I was like, yeah, yeah, like that.
So we, we're going to, we don't really have the time to read.
(01:11:46):
I would love to have read it, but, um, for you guys, but we'll just share the PDF and
so you guys can read over it.
So really quickly, last question, AJ, what are some of the things that you do to cope
with your diagnosis?
Diagnosis, um, diagnosis, diagnosis, diagnosis, diagnosis.
(01:12:14):
For me, one of the biggest things that I've had to do are cut out.
And this sounds really, really bad, but I've had to cut out toxic people.
It doesn't sound bad, of course it doesn't sound bad.
(01:12:35):
Who you are around is a huge trigger for even physical ailments because it's a huge, again,
stress is a huge trigger.
So I've had to limit one around.
Like you said, I don't commit to anything anymore.
(01:12:58):
I really don't.
And unfortunately that has meant that I've had to cut ties with a lot of people because
they don't understand.
They just don't, I'm sorry, but I, I can't commit to that.
Maybe I'll show up.
Maybe I won't.
(01:13:19):
Um, physically I have to cut out or cut significantly cut back on salt.
That salt is a, I'm not sure logistically how it all works, but salt is a trigger.
So do you find that pink Himalayan salt?
(01:13:43):
I haven't actually tried it.
Actually know what?
I think that is the salt I have.
Because it's not as potent, I find.
I just barely have salt in anything.
But also, but also salt tastes, everything tastes salty to me.
(01:14:05):
So I don't like salt.
Like I'll taste, I'll taste something and be like, oh my goodness, this is so salty.
And someone's like, no, it's not.
What are you talking about?
So I don't know.
Yeah.
Um, and I don't, I don't crave salt at all, but that might be the medication that I take
(01:14:29):
to offset my symptoms or my disease.
But I avoid the heat like no other.
I don't go out in the summertime.
I'm an inside person.
I just, I really, really limit what I do now.
(01:14:53):
Some people might view that as lazy, but oh well.
Oh, that's the other word.
They called me lazy.
What?
And to outside people who don't know the struggle, yeah, I might, you and I, not you, you're
definitely not lazy.
Definitely not.
But I've been called it.
(01:15:15):
Well, they don't know you very well then cause you're not, I might be to the outside person
cause you're not lazy.
Cause I get off work and then I'm just like, I can't do anything.
I can barely cook dinner, but yeah, but you push yourself to get your house clean because
you can't handle it.
Yeah.
I can't handle messes.
(01:15:36):
And we're like, no, do it tomorrow.
And you're like, but I just need to do it.
And then the next day you're like, I hate my life.
But you're like, I know I've been there and I was trying to help.
Yeah.
It's okay.
Then she does it to me and I'm like, I, you're right.
Yeah.
(01:15:57):
So what else do I do?
What do I do?
I think that was everything.
I know you drink more water.
I probably drink more water than I should.
I probably drown myself a little bit.
Yeah, but that's really good about get like when you're working with like chronic stuff,
(01:16:17):
it gets those toxins out.
It gets your, your body filtering those things out.
And if you don't have water, then you're going to be dehydrated and then all of those things
are going to build up.
Who wants to do that?
And I think that is another thing I think that's frustrating is because to the outside
(01:16:37):
person looking at me, I don't look like a healthy person because I'm overweight.
But then at the same time, I look like a healthy person because I don't look like the definition
of like a sickly person.
You know, right.
You don't look like you're, you don't have blue or action skin.
Normal.
You don't look like you need help.
You know, you just look like maybe you eat too much, which is really rude.
(01:17:01):
But on the inside, I'm like, no, I eat.
If I eat, if big word, if I eat because eating is a difficult task for me, I don't want to
eat.
I don't like to eat.
She loves the veggies.
I know that.
I eat predominant diet of veggies.
I have forced myself to eat protein most of the time.
(01:17:27):
And so it's like, well, something's not right.
That is a key.
I want people to know that is probably if you were like that, that it might be your
oh, moment of maybe something's wrong.
It doesn't mean what we have.
It's just one of those things.
Maybe I should look into this, you know.
(01:17:47):
Yeah.
Or if you're craving the same thing all the time, unless it's like the jalapeno cheese
bowls or something or the chive ones.
Those are just good.
So anyways, but I've been dreaming about it since you shared it.
I'll bring you one.
(01:18:07):
But I do want to just leave you guys with the message.
I know I said earlier, please, please be an advocate for yourself and those around you
that you might see are struggling.
Please never give up.
Don't take no for an answer.
And find different alternatives to get that answer or start doing what it is that makes
(01:18:33):
your body feel better.
If you feel like for like being lactose intolerant.
I cut out dairy before I went to a doctor and I said, you know, I think I'm lactose
intolerant.
I seem to be OK with cheeses.
But when I drink it, I feel really sick.
And she was like, well, you could pay for an allergy test, but let me say this in my
(01:18:56):
experience.
If you have symptoms that are alluding to this and you cut it out and those symptoms
go away, you probably have it.
And I was like, well, I don't.
Yeah.
I'm technically going along with that.
(01:19:17):
And feel free to reach out to us on social media email, you know, if you want to.
It's all on anyway.
If you want our email is to mamasafterdark at gmail.com.
If you would like to, if you have questions, if you want to talk about what you may be
(01:19:38):
experiencing, we're an open door.
Open book.
Yeah.
If we don't know the answer, we might find it for you.
We'll help you.
I say might because we like, we like to go down rabbit holes.
So we'll gladly go down that rabbit hole with you.
Instead, it could be this, it could be this, it could be this.
(01:19:59):
I don't know, go see what happens.
But you're not alone.
I mean, that's what we did for each other at our at the clinic.
You know, well, maybe it's this or I looked up this or ask about this or, you know, they
gave a diagnosis to.
I mean, we did that with everybody's diagnosis.
What does that mean?
Yeah.
(01:20:20):
Go back and ask about that.
Ask about this treatment that they're putting you on because it says XYZ happens.
Ask those questions because they are so busy and I know that they want to help people.
That's why they got into that field.
Right.
They are so busy that the well intended statements are said.
(01:20:47):
They intend to do that, but they walk out that door and they are pulled six other ways.
Please know that there are people and if you don't ask those questions, then they're going
to assume that you're fine.
They're going to assume if you don't say that this happens to me after I take it, they're
(01:21:08):
going to assume that you're fine with taking it, that nothing is happening.
That's bad.
So share those things.
And if their doctor or health care provider isn't patient enough, isn't to where you're
like, oh, well, it's fine alternatives or they kind of roll their eyes or nothing happens
(01:21:29):
after find a different person.
Advocate for yourself.
Never give up.
Yeah.
I think that's our main thing.
Find out what works for you.
Be those scientists for yourself.
Listen to your body.
And if you're not getting what you need, find it.
Keep going.
Even if it's to where you start doing it yourself or you change your provider to somebody else.
(01:21:54):
I know insurance, but even with that, find alternatives.
There are so many people out there that can help you.
It's a throwdown.
It's a challenge.
We've got something for you.
So I have a challenge.
We're going to wrap this up.
(01:22:15):
I have a challenge and that is to cut yourself slack.
To put it simply, when you're stressed out, when you have all of these pressures happening
to you and you're just like, I have to take a break, take a break.
Because I have found in any situation when you are making a judgment with that anxiety,
(01:22:41):
that stress, all of that guilt, whatever is coming up, it never serves you.
So cut yourself some slack.
Because you deserve it.
Absolutely.
You would cut your friends some slack.
Cut yourself some slack.
Treat yourself the way you would treat your friends.
(01:23:02):
You've heard enough about us.
Let's get a little bit from you.
Here's your Q&A and your polls.
Sip your tea.
Let's chat a while.
The question of the day or the week, what have you learned from either your own experience
(01:23:23):
or from watching yourself or yourself watching someone else close to you?
What have you learned from the experience or experiences of chronic illness?
Or what have you learned from this episode?
(01:23:46):
So with that, we love you.
So grateful for you.
Have a blessed day.
Bye.
Thanks for hanging with AJ.
And A-Rae.
We hope we've brought a little fun, sass, and joy into your lives.
For more information about our episodes, us, and what we may be up to, please visit our
website at wanderingmusings.my.canva.site.
(01:24:12):
That's wanderingmusings.my.canva.site.
If you enjoyed this episode, please like and subscribe to us wherever you listen to your
podcasts.
Cheers to womanhood.
(01:24:37):
Ciao.
Thank you for your support of our podcast.
Original music composition written and performed by Gregory Anderson and used with permission
(01:24:58):
from Anderson Media.
Welcome to the wandering musings of AJ and A-Rey.
(00:04):
To Mamas After Dark.
Sit back, relax, and enjoy.
Welcome everyone.
(00:26):
Welcome!
Hello!
Someone's awake.
I got up twice today.
And...
Before we were...
I don't know what I'm trying to say.
Are you awake?
Yeah, I think so.
(00:48):
I'm really excited.
Before we started recording, I was working outside.
Because it's been calling me for the last couple of days and weeks off and on.
You know, off and on the snowstorms.
And it's sunny.
So today...
(01:09):
Yeah, today...
Well, it started yesterday because I, without knowing...
Or without planning on it, went over to my dad's and he was like,
Oh, we're going to prune this.
And I was like, Oh, that would have been nice to know so that I could bring the appropriate things.
But that's okay. I came home.
(01:31):
We had to get some other stuff.
So I came home, grabbed my pruning shears, my automatic ones.
That use the battery.
And pruned it.
And I took one of the clippings because I was like, Well, maybe I'll get a rose bush out of it.
Maybe not. We'll see what happens.
(01:52):
I love it.
So then today I was cleaning up some of the stuff that I planted.
You know, the moonlight planting that I was talking about.
Yeah.
Thousands of recordings ago now.
Just before winter.
Yep.
I was cleaning that stuff out because the things are starting to sprout.
(02:15):
The new growth. So I was trying to clean out the gross stuff.
Sorry.
I just watched my elbow.
This daylight savings thingy is getting to us already.
And that's only been a few hours.
Oh, and I planted, I planted one of my rose bushes.
That I ran out of time for before winter.
(02:38):
And so across our fingers, it looks like it should pull through.
I put some rose feed in it too.
Just in case.
The other one looks like it survived a little bit better.
So the pot that I have in the backyard that has all the weeds in it.
(03:01):
We're going to dump that and put new soil in and I think I'm going to plant the other one in that one.
It's the bright pink one.
It's the light pink one.
With the purpleish center.
So.
Our gardening talk a few weeks ago got under your skin.
(03:26):
Oh.
Dreaming about planting things since winter. Come on.
I love it.
But yeah, we got lots of projects to do.
You're never idle.
And if we get it done, great.
And if we don't get it done, we'll try again next year.
It's true.
(03:47):
It's true.
So what you drinking?
Ah ha tea!
It's time to spill the tea.
What are you thinking?
What are you drinking?
I am drinking a chai tea.
You know, tea tea, chai tea.
I found this really cool sugar free one that you just add like whatever milk you want to it.
(04:17):
So and I was like, I'll try it out and it's really good.
So I went back to get some more and the place because I got it at the Amish store down here.
And the place that I got it out at, they didn't have any more.
I was like, oh, other people liked it too.
You know, I have found if you find something you really like, that's the story of your life.
(04:39):
You go back to get it and it's no more.
Yeah.
So I think I'm going to see if it's cheaper online.
I hate to do that because I really love that store.
But ten dollars for this little tiny thing is a lot.
But I wanted to try it.
Did you ask if they're going to have it in stock again?
(05:01):
Oh, they still have the tag there and I would assume they would if they saw it go like, yeah, you know.
But who knows?
Who knows?
What's you drinking?
I have cucumber water and I also am having a tiny little treat of a ice cold Dr.
(05:22):
Pepper.
Don't tell my son I stole his Dr.
Pepper.
You bought it.
I found it in the fridge this morning.
I was like, oh, ha ha.
Nice.
Nice.
Good.
My dad loves Dr.
Pepper.
(05:43):
And so every time we go over, he has a Dr.
Pepper.
He's like, are you going to go to the Maverick?
So we went to the Maverick on Saturday and we got him a large fountain drink.
And his face lit up.
I love it.
It was really cute.
(06:05):
It was also really cute when he found his donut on the kitchen counter.
His face was just like a like a little kid and like pure excitement.
There's my donut.
Was it missing?
I think he forgot about it.
Oh, that's so cute.
Like I think they bought it and then he got doing other things.
(06:28):
And so he thought maybe he already ate it.
And then he saw it.
He was like, oh.
That's the best.
When you forget you've got something and then you see it or find it later and you're like, oh my gosh.
That's awesome.
Right.
Well, I apologize for my sniffling spot and everyone because it's cold down here.
And my bicep met.
(06:49):
That's fine.
I can't hear it.
So it's fine.
Cool.
Excellent.
Excellent.
How about you?
How have you been?
I've been all right.
I'm enjoying the warmer weather.
I have my window open yesterday or my sliding glass doors.
(07:11):
I think I'll do it again today.
Nice.
My son was complaining about it.
He comes downstairs wearing nothing.
He likes to walk around in his skivvies.
And I'm like, dude, put some clothes on then if you're cold.
Yeah.
(07:32):
Kaden does that too.
I do the same thing.
Like grab a blanket or something weirdo.
No, it's fine.
Maybe it's a boy thing.
I think so.
He doesn't like to be wearing clothes.
I think it might be a sensory thing too.
That makes sense.
I'm like, well, if you're cold, put something on.
I like the fresh air coming through.
(07:53):
But then Kaden will go outside in a pair of shorts and a t-shirt with a snow storm.
So I'm like, you know what?
I don't know what's wrong with you.
Yeah.
It's been a busy week, but not too bad.
Nothing unusual.
That's good.
Surviving.
Good.
Living.
(08:14):
Living life.
Awesome.
So on to our musings.
Yeah.
Let's listen to some musings.
Quotes, poems, short stories, inspirational, uplifting news, and of course, tippy-dippy
astrology.
Then.
What you got for me?
Hold on.
My notes just turned off.
(08:36):
Oh no.
I got them.
We're good.
I'm excited.
So I have a quote.
Yes.
From a person named Chris Vos.
And I didn't know really much about him.
But he, after research, he's a CEO, inspirational speaker, and author.
Yeah.
(08:57):
So you can go down the rabbit hole.
I'll have it on our blog.
Because we don't have space in our episode notes anymore.
I find that sometimes we run out of space and then we have to change what we give.
And I just want to make sure everybody has all of the rabbit holes to go down.
A follow-up blog post with all of our resources.
(09:19):
Yeah.
So I've been releasing it.
I think I released it the first time last week or the week before.
And I'll release it on the same day as our episode comes out on our blog for everyone.
Just side note.
But anyways, the quote, the long-awaited quote.
Empathy is not about being nice or agreeing with the other side.
(09:44):
It's about understanding their feelings and perspective, regardless of whether you share their position or not.
I really like that.
Yeah, me too.
I think empathy is misunderstood sometimes.
I agree.
Or mistranslated.
(10:05):
And that really ties into our main topic, which we'll get into later.
But that really ties in.
Well, I think sometimes people think it's more like sympathy.
And yes, they're close.
But empathy is feeling what other people feel.
Again, even if you don't agree with it, you understand and you feel what they feel.
(10:31):
Whereas sympathy is just being like, oh, I'm sorry.
But you don't really feel it.
Because you're okay.
You know what I mean?
Yeah.
But I thought that went really well with today's topic.
Let me get to that.
Yeah.
Thank you for sharing that.
(10:53):
You're welcome.
So on to our hippie dippy astrology learning.
One of my favorite.
I'm going to apologize because it's been a while since I've written this.
And so I've read through it like the beginning of last week to remind myself and to see if I needed to add anything to it.
And then I forgot again.
(11:15):
So bear with me because I had all the pronunciations worked out and I don't have it anymore.
But we're going to talk about lunar rocks and I wrote down lunar rocks, baby.
I'm sorry.
(11:36):
I love it when she does things like that.
You're fine.
So it's an an or a.
Okay, hold on.
And ortho site and ortho site is a calcium rich white rock, which is believed to make up the ancient crust of the moon.
(12:00):
It is made up almost entirely of plagioclasts, felt spar, a common lightweight light colored mineral on Earth.
It is an igneous rock, which means it's cooled and solidified from hot melted material.
This mineral floated toward toward the surface and formed an or though site and ortho site heavier mineral sank and produced the denser interior of the moon.
(12:32):
The primitive lunar crust was made was the primitive lunar crust was most likely made up of an ortho site.
We knew we were going back to school.
So I bring it up because I'm going to share the link. Everybody can journey.
(12:54):
A long journey to the lunar touch rock. If you go if you go online, you can see the National Air and Space Museum, and they have it on exhibit, where you can touch a piece of the lunar rock.
Oh, that's cool.
(13:17):
Yeah.
The lunar rock really does rock baby. Yeah, it does.
That's cool. It sure does.
That's awesome.
Thanks. But I also when I was waiting for you to get online to this morning, because I was running late.
(13:39):
Yeah, you know, it happens. Um, I was looking at the alchemy of herbs book that I shared with everyone before. Um, and I was reading about the ashwagandha herb, and I was like, Maybe you want to talk about that, but then I was like, I haven't really researched it so I don't want to talk about it.
(14:00):
But I will research it and then tomorrow, when we release our blog, um, post about it. Well, actually.
Yeah.
Tomorrow, tomorrow when you're listening.
(14:30):
I don't know when some date.
There is some date that you'll be paying attention to this.
I promise I'll wake up before we end our conversation.
Um, I've been gardening. Okay, I don't have, I don't have a brain right now I've been gardening.
(14:52):
Um, so I was, I was reading about it and it kind of ties in with today's topic. And so I thought, hmm, maybe we'll talk about this but the ashwagandha can be translated to mean smell of a horse's urine or sweat.
I know that sounds so delightful.
(15:13):
Oh, but, but,
um,
the plant properties can do the following.
Adaptogen anti inflammatory antioxidant anxiolytic. That's for your anxiety.
(15:35):
Afrodisiac immunomodulator cardio protective.
Um, because in the western world, it is kind of new to us, and it gives the ability to both strengthen.
(16:05):
And those who are tired and calm those who are stressed, in the Jus.
And I was like, I need some help.
I'm all showing it to you.
Put it in our blog, I think we'll actually do it like we'll release this and then we'll do it the following Monday.
(16:28):
That way y'all know what we're talking about and you're all like they're weird.
Maybe you are thinking we're weird, but hopefully we're just funny.
Clearly after today, after this, you know, the last five minutes, yes, we are weird. I'm just kidding.
At least I am.
What is in your tea today?
(16:50):
Just milk and chai.
Lactose free milk.
You know.
Anyways, cool.
Your turn.
Thank you for screaming.
Well, just really quickly, I want to share a good news article that I found.
It is entitled Hug Therapy Helps Premature Babies Develop As Volunteers Sit In For Moms Who Can't Be There.
(17:18):
And it just caught my eye because I thought it was so cute.
It's in Argentina.
It's a, so it's for premature babies that have parents, either mothers or fathers or both, who are absent and they can't be with the premature babies either due to work, substance abuse, incarceration, even if they're injured or even have unfortunately passed away.
(17:49):
Because of accidents.
There's a team of volunteer huggers who take two hour shifts holding babies in their arms to benefit their growth so they aren't left too long in the machines.
And I just thought that was so cute.
Okay, sign me up. Where do I go?
(18:11):
I know, right? I would totally, if they had that here, which I don't know, maybe they do, but.
They do.
I would totally do that because who doesn't love snuggling cute little babies?
Because you know they have the science behind the skin to skin that helps the babies.
And in the article, it says, hearing them.
(18:34):
And then when we're all done, we'll take them home.
I mean what?
No, officer, my bag was always this big.
Oh, that sounds awful.
Sorry, I just meant that as a joke because they're so cute.
No, it says hearing them sigh, hearing their little hands unclench and seeing their skin turned from beet red to a more natural color is a sign enough for most humans to understand the baby is benefiting from that human contact.
(19:07):
So they said that this hospital welcomes 50 volunteer huggers at a time to spend time hugging premature born babies.
Right now, it consists of 49 women and one man, and it said, go on son.
That's what the article said.
(19:28):
And there are 200 applicants on the waiting list so they only allow 50 at a time.
Yeah, it's if you're maybe, maybe, maybe check around if your hospital doesn't have something like that.
See if you can start it, maybe give the idea.
(19:49):
On the same page today, I would, I would totally do that.
That was my good news article of the week.
Yeah, I like it, and it kind of is in the same vein as what we're talking about today.
You know, I didn't even do that on purpose. Splish splash. We're diving into the main topic.
(20:14):
Yeah, I mean, it's a positive side of what we're talking about.
Yeah, which is which is chronic illness.
It's a little bit ailment, disease, however you want to phrase that. It's a little bit heavier of a topic.
Yeah, it's one that's really close to our hearts because we both have a chronic thing that has changed our lives.
(20:36):
And for the good, bad, ugly, whatever you want to call it.
But and when we have topics like these, we always like to start out with that disclaimer of we are not professional.
We're not medical professionals. We are not any type of professional giving.
We have a degree in life. You know, we're not giving medical advice.
(20:58):
We're not giving any type of advice other than our own personal experience and saying this is what how we are navigating, coping, navigating, and take it as you will.
And we hope that we have. Yeah, research it out. See if it works for you.
(21:22):
Obviously, if it doesn't work for you, don't do it.
Yes. It's kind of how I am. My brain's like, don't do it. It's like when you're like, oh, that hurts. Well, stop doing it.
We just hope that maybe something we say might be helpful to somebody who might be going through something similar. Yeah. Yeah. Yeah.
(21:47):
So to start us off, AJ. Yes, ma'am.
What if you feel like telling us what are you navigating?
I navigate a couple of things. I have chronic pain.
(22:11):
I guess I call it chronic or something like that.
I know. I guess you want to call it technical.
So I have that. And then I also have something called
Meniere's disease. That's for the rest of my life.
(22:34):
What is that? It's an inner ear disorder.
Corruption. It's a it's a inner ear. It's a disorder of the inner ear.
It basically makes it so that if you're in a flare up, it makes it so that you have severe vertigo.
And it's not fun. And so you have to have a lifestyle change to handle it.
(23:03):
And it's not the funnest thing ever, but you know, you handle it.
You deal with it.
So and it's a fairly new thing for me. Both of these things are fairly new within the last couple of years.
(23:26):
And I guess I should say start out by saying that the chronic ailments or chronic illnesses,
diseases are long term health conditions that can have a significant impact on a person's quality of life.
And so they whether or not you have an official diagnosis,
(23:50):
you know, these chronic ailments, they can you can have them as you're listening.
You might be thinking, oh, maybe I have a chronic ailment or an illness,
but I have haven't had it officially diagnosed because for a long time, I didn't think I.
I didn't think I fit into that category because.
(24:16):
We are very fond of this term. I didn't fit in the doctor's pretty little box.
I didn't fit inside their little check marks.
And so I didn't think that I qualified as having a chronic ailments.
But if something is. Which does play into your mental well-being after you think you're not.
(24:45):
Yes, yes. And you're like, oh, I'm not crazy. I know what my body is doing, but that's a different.
Yes. Oh, gosh. We could go on forever about that one.
But you. You deal with these things for so long.
(25:08):
And whether or not you start to assume everybody else is dealing with it.
Oh, OK. Well, if I'm not sick, then everybody else must be going through this, too.
Yeah. Then why did they look better than I? Right.
And to speak on that, it's.
(25:33):
Chronic illnesses and ailments are.
That's what makes them so difficult is because.
It doesn't just because, you know, you have these symptoms doesn't mean this person with the same diagnosis or whatnot is going to have the exact same symptoms.
(25:56):
I'm seeing a pattern because there's a lot of things that we have talked about lately.
That we have said that. Even though we may look the same in terms of having.
A human body and being of the human species, we have to tailor things for ourselves and our families.
(26:22):
That they're not. Just because it's right for one person doesn't mean it's right for another person.
I like what we said in the opening, but to say things simply, living with a chronic illness or ailment ailment.
There we go. Alment. Not element.
Sucks. Yeah.
(26:43):
From feeling like you are constantly drained, feelings that you are broken on top of feeling awful almost always, if not always, one has the pressures of life and the people around them.
I've had judgmental looks and I even recently had someone say something judging to me because I have chronic Lyme disease and it's something that if you look it up in the dictionary or not the dictionary, but the web.
(27:14):
MD or even talking to health care practitioners in the Western world. No offense to them. They're great for what they're good at.
It's there's nothing wrong with you or there's something else happening and then you go through all the testing and they're like, well, there's nothing wrong with you.
(27:35):
Like, obviously there is something with me. I'm not operating at functional.
And it's the they don't fit in their perfect little box. If you don't check mark all the boxes.
You don't have it.
And you're fine.
You're good.
It's in your brain and you're like, no, it's not in my brain.
This pain I'm feeling is not in my brain.
(27:58):
So, like I was saying, I've recently had someone judge me that would know better because they also had a chronic thing but I don't think I'm not one that shares my chronic issues with a lot of people.
You have to be really close to me.
(28:20):
Or I have to feel like I have to explain myself.
And if I don't feel like I have to explain myself, then I don't.
But I had a person who was like,
I wrote it down because I needed to write it so that it didn't sound bad because I care about this person.
(28:45):
You know what I mean. But, um, judging me by a cover I look healthy.
I look like I shouldn't be overweight I look like because I'm active and I do all of these things it's like well what's your problem my problem is my body doesn't function.
I'm healthy, that it should.
(29:07):
Because of my experience with Lyme disease and having it for so long.
And I will circle back.
I promise.
It was so long without having a diagnosis because all of the main chemistries and blood work came back as, oh you're completely healthy for so long that by the time I did go to like a natural path.
(29:36):
And I was like, oh, I'm healthy, I'm healthy, I'm healthy, I'm healthy, I'm healthy.
And then I realized I had a surrounding that we had to kind of filter through and be like, oh you had, at some point, Lyme disease with your EPS and bar and everything else.
(30:02):
So I went into that but this person pretty much called me lazy, that I was rude.
And that I was being disrespectful and inconsiderate.
And I said you know, I'm not one to go around talking about what I'm going through and I think I learned that from my grandma.
(30:28):
She only told you if she had to.
And I said, but let me, let me explain what I'm going through and I'm not using it as an excuse for anything.
But this is why I don't commit to things. And I laid it out, you know, like, I get triggered by things that I don't always get triggered by.
(30:51):
They're not constant.
They're not like,
for some things it's like, okay, for example, I'm lactose intolerant.
I can have cheeses, I can't have like straight milk.
Kind of thing.
I know that if I have stuff that has it, that's not cooked.
(31:14):
I will probably not feel well.
That's same trigger, right?
I have a glass of milk that's not a specialty milk.
I will get sick.
That happens.
For me, it's I can work outside for eight hours and be totally fine.
(31:35):
Or I can work outside for 30 minutes and be down for the count for the rest of the day and then the day after.
Because I have symptoms that include brain fog.
So that's why sometimes when we're talking, I'm like, I don't even remember what I was trying to say, or I don't remember the word.
(31:59):
And it's also those moments where you're like, when you're meeting somebody new or or whatnot, you're like, I feel like I might be judged because they think I'm an idiot.
I don't know what I'm talking about.
You know, so like brain fog is something that I go through.
(32:21):
Lime fibromyalgia is pretty much where same symptoms of fibromyalgia is just most consistently happens when you're triggered.
So it's not all the time that you have all of these aches and pains, but it's most of the time you have at least in my experience.
(32:42):
I at least have them in like dole, like a dole egg that I've learned to live with.
And I think there's other symptoms, but those are like the two that come to my mind right now.
But yeah, so I explained to this person, I said, you know, I have all of these things that that may or may not trigger me.
(33:06):
So that is why I don't say, hey, for this deadline that you're imposing, I may or may not have it ready.
It's how I answer it.
And I know that might be very inconvenient, but that's how I have to live kind of thing.
(33:30):
Stress is a definite trigger, though, and I think that is for everybody's chronic things.
It's at least a pattern that I see in people that I know to have chronic ailments.
That stress is definitely very hard on them.
(33:55):
And then at the very end, this person was like, I can see that you have a lot on your plate because I also brought up like my grandma passing.
You know how it does affect me even maybe even a little bit harder because of my chronic ailments, because, you know, I'll be thinking about her and of course really sad.
(34:16):
And then I haven't done this in a while, but like I'll be crying pretty hard.
And then I feel like, oh my gosh, I have to throw up, you know, and then everything else just falls apart.
It's to the point that at least spot knows like if I am very upset, he'll be like, you have to calm down or you'll get sick.
(34:41):
So, yeah, as.
First of all, I want to know who this person is so I can go give him my piece of my mind.
It's a conversation conversation we had before and you know if you think okay.
I don't like this person.
I have as a race friend, I watched her get diagnosed with Lyme disease, and it was very difficult getting her watching her be, I guess, Miss Miss diagnosed.
(35:19):
Cast aside, cast aside ignored.
What sort of looking for.
Just the doctors would be like, whatever, you know, for for a long time years.
Oh, you need to lose weight.
That was one that came up.
(35:40):
You need to lose weight and I said, you know, at the very beginning of my journey, I worked out six days a week, I was at 140 pounds, you can't tell me that I need to exercise.
And that is the reason why I feel like crap because I haven't been.
I haven't been because I hurt, I hurt a lot.
(36:01):
You know, and.
Yeah, I had a lot of people.
That are health care providers that were like, oh, you're fine.
Like fatigue.
The first time I brought it up.
(36:23):
The doctor pretty much told me, well, you're young and you'll grow out of it.
I was like, I'm sorry. What? Yeah. Well, you have young kids and you're working 40 hours a week. And I'm like, and I shouldn't be like sitting down for five seconds and falling asleep.
(36:44):
Yeah, you're, you're just in my early 20s. Young mom, you're tired. It's fine. You'll you'll you'll get better.
Yeah, it was a lot of be like, we're sitting here almost 20, 20 years later and I haven't grown out of it yet.
It was very infuriating to watch.
(37:08):
That happen and.
To watch her do all of the things that they were telling her to do and to see it not working to see it make it worse.
You know, just, it was awful and to have that helpless feeling of I don't know how to help.
(37:30):
And to see the change when with that diagnosis finally came and then the slow changes of the lifestyle that you've made.
On my own without a doctor's help.
I mean, I got a natural path to do. She's the one that diagnosed me. But even then she kind of cast me aside because her treatment for making me very sick to.
(38:01):
And instead of finding alternatives.
And expensive to.
And very expensive.
Yeah, this was out of pocket and it was like two to three hundred dollars.
Thing. Thank goodness I could get my blood work done.
(38:25):
Three because I had already paid out of pocket, but yeah, so it wasn't working and to do the other stuff that she wanted me to do, I would have had to pay like a thousand bucks and I was like, I cannot do that.
I cannot do that and have everybody eat because at the time my kids were still in.
(38:48):
They were were they still in daycare. I think they were still in daycare.
It was just like that towards the very end of that, you know, like, and I was like, that's like a payment for them to go to daycare.
And I had to have them do a daycare because I have nobody else to take them to.
(39:09):
And that is one of the things that's frustrating about chronic illnesses is you're already stressed, tired, emotional about, you know, not feeling well.
And then you're spending all of this money going to doctors and whatnot.
And so you have the added stress of these medical bills piling up.
(39:32):
And so then you're stressed about paying these medical bills and then you're going, OK, well, then I should stop going to the doctor.
And then you're like me where you get overwhelmed by how many doctors appointments you have and all the blood tests and et cetera, et cetera.
And so it just keeps piling on and it does not help your chronic illness or ailments.
(40:00):
And it just it's a never ending cycle.
And I see yours. OK. Your journey has also been very stressful to watch.
And I feel for your frustrations, because being a person that's gone through it, it's like, I know how you feel like sometimes just looking at a person.
(40:23):
That's the nice thing about finding, I guess, if you can put a positive to it, right, because I'm a person that does that.
The nice thing about finding other people who have chronic things that they're going through is that you can just look at them and they know.
They know you don't have to say anything else and just be like.
(40:44):
And they get it. And that was a nice thing about the three of us, one that she wasn't ready to talk about.
And I understand that was that we could just look at each other and, yep, I feel you.
Go take a break. Do whatever you need to do. Go for a walk.
(41:05):
Go. I had multiple times that both you and Nettie told me to go home and I was trying so hard because I had already gone home before.
And this is before I had, you know, the what's it called again? Why? Where I could go.
What? Yeah, before I could before I had the health plan where I could leave if I needed to.
(41:30):
Your 9.5 job? What are you talking about?
I can't remember it's called that on my brain. Insurance? PTO? Insurance.
Yeah, like kind of like PTO. But what's the doctor's plan that says you can go home?
Oh, FMLA. Thank you. But I had the continuous one. I didn't have it.
(41:56):
Yeah. You know, because I could go if I needed to, but I work if I needed to.
There were several times that they were like, girl, you need to go home. And I'd be like, I can't drive home.
I can't I can't get home. So I was blessed that I don't know if you I think you took me home, too.
I'm sure we all did it for each other. Yeah.
(42:19):
Or if I can make it home, I preferred if I can make it home because I didn't want to ink.
That's the other thing that's really stressful when you're chronically ill is you don't want to inconvenience anybody else.
Oh, yeah. 100 percent.
And then you feel guilty that you're not going to work, you know.
And so you sit there and you're like, girl, you've got to stop or you're not going to get better.
(42:46):
But I think since taking myself out of that stressful situation, because it was stressful.
And then we had all the politics on top of it, the nine to five.
Sure. Yeah, you can say from everything about that particular job,
(43:12):
which I really loved.
Don't get me wrong. I really loved that job.
I just couldn't handle stress from everything because it was making me sick.
And I recognized that I needed to get out of there.
And then from the other job that I had after when things started to get toxic, I had to I had to leave.
(43:33):
But we were going to be moving.
And then that fell through, which is good, because that's when I heard or learned that my dad had MS and we needed to be here.
So things happen for a reason, but I have noticed significantly a difference of not being stressed out.
(43:56):
Because even if I get to a point where I'm triggered to where I have to take a down day, it's only for a day.
And it's where I can still do things in between.
And it's not because before it was days and I had to be in bed. Yeah, it was. I have I was going to say I've noticed that your flare ups or what you want to call them.
(44:20):
I call them flare ups, my triggers are way, way less frequent.
They're not as bad to where that we yeah, you need to stay in bed or down for the count.
(44:41):
The scariest time for me.
Was when I was still in the house, the other house.
And I was called it. I was like, no, I can't say that. And thankfully, Nettie was down the road.
(45:04):
And I couldn't walk to my bedroom.
That was the scariest part.
And I literally had to have spot.
I like wrapped my arms around him and I he had to walk me down to my bed and I laid there.
And then Nettie came with alternative ways.
(45:28):
And I bring up.
To get things under control. This is back when I still had on my lower back those veins that would show up.
From I think those are from the bio films that I've been reading about.
But they I haven't had those show up in a long time. I'll get pain there, but I haven't had those.
(45:53):
And I'm always like, are there veins there?
Because then then I know how bad it might be if I don't see them.
Then I know and I know you've seen them before because I've had you put.
Back when we were working together, I was like, I really just need somebody for me.
You know, kind of thing. And.
(46:15):
Yeah, that was the scariest. I was like, oh, my gosh, I.
I can't not be able to walk like I have to be.
And something's got to give. And so it was a really good day when.
You know, I had quit the second job, the job after we worked together.
(46:36):
I put in my two weeks and then.
When that came up and it looked like we weren't going to be able to go just a little bit before.
The end of my two weeks.
I was I just I kind of had a little breakdown because I was like, if I don't go, then I probably should stay.
(46:57):
And he was like, you don't have to go back to work.
And I was like, oh, I see you.
I mean, I have a hard time not.
I have a hard time being vulnerable.
In terms of. We only have a one income, and so if something happens.
That scares me.
(47:21):
But at the same time, I'm able I'm able to be doing the steps to help me heal and to help me minimize my triggers that I don't even know about sometimes.
And I think you do a wonderful job because.
Like I said, you're doing even a year ago, there's a huge difference in you and.
(47:47):
And I am so proud of you and how far you come in and taking your health.
Under your control.
In the best way that you know how and.
I think it makes a huge difference because having a chronic element or illness or whatever it may be is not easy.
(48:09):
At all.
And.
And some of the treatments, and I know this has happened with you, some of the treatments have other side effects that you're like, is it worth doing.
Yeah.
I even know, and I don't want to share too much because it's her story to tell, but even with Nettie, like there are things.
(48:34):
She doesn't like to be on a whole bunch of medication, so she'll try to cut out as much as she can and have certain things for just when it is, and I've done that.
Okay, I have this in my arsenal.
If, if I'm not feeling great, if it's so, so bad, I can do this.
(48:55):
I'm in the exact same way that I get, I get to the point where I'm like, I don't, like I said earlier, I'm so overwhelmed by doctors, doctors visits and being on these medications, I'm like, okay, I'm going to do everything I can to stay off of them and only when I need them.
It does get very overwhelming.
(49:18):
And there's well and, and those things play with your chemistries, I mean they're good to a certain point, but they play.
Excuse me, they play with your chemistries, and then it changes and alters other things and so that's like, when you're doing your herbal stuff.
You need to know what it interacts with, because a lot of medicines are based off of the natural world and we've synthetically made them, or we've empowered, like we've put more to it, you know.
(49:50):
And so if you're, you're already on a blood thinner and you take a herbal thing, whether it's a plant form, or a powder or whatever, and you mix it and it is another blood thinner, well then you're going to have problems right.
Or, if they're counteracting each other, you know you're going to have problems so it's really good to make sure and I think that's what we're trying to say in the very beginning, make sure you're researching things, make sure you're working with somebody who is knowledgeable
(50:25):
about what you're going through and how they can counteract each other or react to each other.
Yeah, do you think that
you've come to terms with your chronic illness yet, or do you think you're still trying to work through accepting it.
(50:50):
Okay, this comes into, because I feel like I've come to terms with how I have.
I feel like even just recently have come to terms with the fact that it's dawned on me, let's say it that way, it has dawned on me that the thought of health, complete healing, back to when I was young.
(51:20):
And before having all of it.
I was going to be back there. It's the same thing as mental right after you've gone through an experience, you'll never be the same person you were before.
And so, I have come to terms with the fact that I will never feel a body that won't have someplace in it, a pain, whether it's dull or not.
(51:55):
And it has come to me that it is okay.
I'm okay with that.
I just ask for more good days than bad, more good moments than bad, because I want to live my life and I want to interact with people that I love and care about.
(52:17):
And I can tell when I'm getting overly stressed because I get overly agitated and moody and I try really hard not to be.
I try to have as much open conversation as possible, as possible with those that are around me.
Like, and I've taught this to you guys, because somebody shared it with me, about how they were reading and that their sister needed a way to describe when they had energy or didn't.
(52:52):
And so I just talked about how many spoons and now you all talk about how many spoons you have because it's so much easier to explain.
And I know you have it right written down so you can paraphrase how you want.
But from when I was just sharing it to people, it explains how many energy bars I have, especially if you're talking about with kids.
(53:14):
Use video games, you know your health bars.
Those spoons are my health bars, and I can wake up in one day and have, let's say start with five spoons and have those gone in 30 minutes, or I can wake up one day and have two spoons and they last all day long.
(53:35):
And I just go through my life, you know, so having a way, if you don't want to talk about spoons, make it something else, but having a way to communicate it to the people that need to know.
Is so important and it helps navigate it so much better.
So much better.
(53:56):
My kids they, they, they joke, oh you're always tired and I'm like yeah, that's my reality now. That's my baseline.
Now it's a good day if I'm at least just tired and not exhausted, or to where I'm like I'm done. And I've, I've been able, and I'm grateful that my family is okay with the fact when I say I'm done.
(54:20):
They respect it because they know I'm done.
And they watch out for me.
I think one of the hardest things is trying to have my son understand that is, yeah, some days are better than others and I have this energy I'm like okay let's go do this or you know I have more energy to even just do things, but even then
(54:43):
you have to consider.
Just do things at home. And then, all of a sudden, your spoons are gone, or the next day, or even the next week. You have no energy and he's like, why, I haven't done anything.
Oh wait, that was like from three weeks ago.
So, yesterday you why yesterday could we do this but you know today you can't explain it I just, I physically can't you know and it's so frustrating.
(55:14):
He now has a, he now has a chronic illness. And so I think, yeah, I'm hoping that there's a little bit more understanding happening, and maybe you could sit down and say, now you know when you feel this way.
That's, that's how I may not look at because I have learned to navigate that part and still be able to function because of necessity. Right.
(55:41):
Life goes on, it doesn't turn off.
You know you still have to do things my bills are still do on the due dates that they're do.
So, maybe just having that short little conversation of, you know how, when you go through this.
This is what I'm doing and you know how like yesterday you had all of this energy and you're all over the house be be be be be be be be be.
(56:05):
And today or like I just want to lay down and sleep.
That is the same.
One of the biggest blessings for me, living with a chronic illness is, I get to work from home now. So I'm not using up all of my spoons in the morning getting ready to go to work driving into work, walking into work, I can preserve my energy.
(56:31):
Well, and you don't have as much stressors from outside horses. Yes.
Being at home. Yeah, I think in the beginning you know for even four years ago.
My life, our life was so different than it is right now and I think that has definitely taken some of the stress off of me.
(56:53):
I'm able to manage my symptoms and I don't have flare ups as much as I used to know triggers for me.
One of the hugest triggers and it even says if you look up what I have it says stress is one of the triggers summertime I do not eat, you will find.
(57:14):
I don't hear from me as much in the summertime because each is one of the biggest triggers for me. I knew to. Yeah, heaps. Yeah, all of us. It sucks. All of us. We don't do so well in the summertime.
Pressure changes fatigue, you know all these things.
I'm always like, oh, I feel better. And you guys are like, that's because we come alive in the winter time.
(57:40):
I mean I hurt you know I don't want to go outside.
Feel the yucky I'm going to puke all summer long.
Well, and, and for me I don't feel like I have to puke but I do feel like all of my life force and then eat that.
Breathe in and taste it. Um, that pulls all my energy out. So I try to do things in the very beginning of the day and the very end of the day.
(58:10):
But I came up or I found this, this quote of what it's like, and it sums up a little bit of what it's like for me, living with chronic Lyme disease, and it's when is Lyme disease considered chronic.
And patients typically use the term chronic Lyme disease to describe the cluster of symptoms that started after getting Lyme disease, and that persists, despite having received of course antibiotic treatment, or whatever treatment you might be going through, which has been deemed
(58:48):
curative by the infectious disease Society of America.
I say it, because that is a Western approach to what is chronic Lyme disease, as it says, it's a cluster of symptoms that haven't gone away after treatment, so people say that they have.
But when I was the person that couldn't walk down the hallway.
(59:15):
According to everybody else was okay.
So, if you're going through that.
Know that you're not alone and know that you're not psycho.
Never. That there's something happening. Even if it's a phantom thing that is happening, it is your reality.
(59:38):
Which is okay to seek and never stop fighting for yourself, or for someone around you that you think you that is struggling never give up.
I don't think, I don't think you.
And I say you would be in the same place that you are right now if you hadn't come along to Nettie and I, because we were like that's not right you should be going.
(01:00:04):
They. I am forever grateful for you guys because you guys pushed me literally picked me up and took me to appointment sometimes.
And fought for my.
You're my voice, picked up the phone and said nope this is not right she needs to be seen.
(01:00:31):
Or we went to your, you know blood draws because just needed somebody to sit with you.
Or, you know, we always.
Yeah, that's the nice thing about finding people that have been where you are.
And that needed to, you know, I said fine for my, my story, I said fine to the people that were like you needed to do this and you should do that and it's because you don't work out and it's because here it's in your brain and all of those things I said fine, I will go
(01:01:00):
elsewhere, I got a diagnosis, it was very nice that I went elsewhere, I'm sorry that I couldn't continue doing it because it made me sick.
And it was too expensive to do alternatives to it.
But just knowing what I was going through and putting a name to it. Sometimes easiest for the best thing.
(01:01:21):
Even if you know it's a terminal thing.
Right.
Obviously I haven't gone through that yet.
I hope I don't go through that yet.
But I watched.
I watched my grandma go through it. And she, when she got her diagnosis of.
She made a decision.
(01:01:42):
She said you know, I could live for a couple more years and be sick.
Or, I could live quality life.
Or, I could live for a couple more months.
Or, however long I'm supposed to be here.
And go peacefully.
(01:02:05):
But she was also like 87 years old.
But what I'm saying is that sometimes we have to make those decisions.
I can keep going and banging my head on the wall.
And have people tell me that I'm crazy.
Or, I'm crazy.
Or, I'm crazy.
(01:02:27):
And tell me that I need to do these things.
But not give me a how to do those things.
That was the most infuriating.
Okay. You want me to do this.
You want me to do this.
How do you want me to do this?
I don't know.
I just paid an office pay for you to tell me that I'm psycho.
(01:02:48):
That is in my mind.
How do you want me to do this?
Well, and I'm going to be out here getting beaten up by someone with some
kind of portraits on the wall.
And it's a very frightful sighting experience for me.
It's cool and I'm really passionate about my week.
(01:03:11):
Yeah.
Like what do you want me to do?
And I feel challenged to determine what exactly I want to do from here.
I'm going to be doing a lot of
work on this.
But if I update, then it helps.
If I take time for myself and slow
If I take time for myself and slow
down.
This is something that's really hard
for me to do.
(01:03:33):
And I'm getting a little bit better.
Because I'm a doer.
You give me a stack of things I will
go through it as fast as I possibly
can.
Like a work.
But anyways, moving on.
I'm going to be doing a lot of work on
this.
I'm going to be doing a lot of work on
this.
(01:03:55):
But I have found if I take the time
to be like, you know what, it's okay
if my best is 60%.
If as long as I'm hitting 60%, then
I'm hitting a
And I know that you've struggled
with that as well.
And are struggling with that.
Being tentative to commitments
and specific events and engagements.
And I'm going to be doing a lot of
(01:04:17):
work on that.
So,
we'll make plans.
You be
Nettie.
Hey, let's plan on doing this.
But if anybody doesn't feel good, we
know that we can count out and
nobody's gonna how many birthday
celebrations have we canceled.
I'm like, you're the president.
(01:04:39):
And do we care.
No.
Because we know how hard it is
for us to do that.
We know how much we have beat
ourselves up
to do that.
To say I can't do that.
It's why
with people that don't know I have a chronic
illness that I'm like, maybe.
(01:05:01):
Oh, well,
you have to RSVP. Well, then don't plan on
me. I won't be there.
If I have to RSVP because
I don't know if I'm going to be
there or if I'm going to be there.
I'm not going to be there.
I'm not going to be there.
I'm going to be there.
People have been trying to get a
lot of work done.
(01:05:23):
So,
we're gonna have to do this.
I'm like, there's no need to
have to go.
And I'm at least
with a person that understands.
There are a couple of engagements
that I've had to be like, I'm sorry.
I hate to say it that way, but that's where I've had to cut myself, you know, in terms
(01:05:46):
of making sure I don't beat myself up.
I have had to catch myself and say, then it's not worth, it's not worth the pain and suffering
to go through for that person so that they feel good and I feel like crap.
I can't do that.
My body doesn't allow me to do that.
I don't have that privilege.
(01:06:07):
Someone helps and you don't have to put a religious thing to it.
It helps in terms of just again slowing us down and giving ourselves a break.
I've found the benefits of it, especially when I was working in that stressful situation.
(01:06:31):
I was like, I have to take my break.
I have to go somewhere else.
I can't be where somebody will find me for one reason or another.
Yoga, I'm getting back into that and I found why I'm drawn to yoga is because you can do
it the way that your body allows you to do it.
(01:06:53):
And it's not so exersive that it takes out a ton of energy.
Like going for a run, bless whomever does that.
If I am running, you better be running too because bad stuff is happening.
(01:07:14):
Take cover.
Clean or cleaner diets help.
Cutting out excessive sugar has helped me tremendously.
I still have my triggers.
Those are going to be there, but my joint pain doesn't hurt as much.
(01:07:34):
I love dark chocolate.
It has health benefits.
It's better.
Yeah, well it's dark chocolate.
Oh, come on.
It's fine.
But doing it in moderation.
Epsom salt baths.
Those are godsend.
AJ is shaking her head.
Those help so much.
For me, I have to do monthly massages.
Again, this is something that I wish more insurance.
I wish I had a
(01:07:59):
better body.
They only do it if you were in an accident or something like that.
And then they usually have it like you get like 10 visits or something.
I'm like, well, there's 12 months in a year.
That doesn't help me.
(01:08:20):
And if heaven forbid, I need an extra one that month because my body, you know, it releases
all the tension in my body is holding and it breaks up all of the toxins in my, in my
tissues.
Because that's what chronic Lyme disease does.
It goes into your tissues.
It's no longer in your bloodstream.
(01:08:42):
It's now in your tissue.
So that helps.
Of course, a ton of research practice and fail.
Right.
I feel like a scientist.
I'm like, can I try now?
You kind of are.
Yeah, absolutely.
(01:09:04):
Just like, and I put this note in my notes because just because you read, not that I
read this for chronic Lyme disease, but for any serious ailment, sometimes some of them
say like arsenic is a good way of going through it.
Don't take arsenic by yourself.
(01:09:25):
Please don't.
You know, I worked at an infusion center and some of the treatments were arsenic, but this
was controlled doses with people that could help you if something went bad.
You know, please use your brains.
So don't take it.
Is what I'm saying.
(01:09:48):
If it says, oh, try this particular thing.
Um, but it has to be this strand and you find something with the same name, but a different
strand.
I'm just saying I have to put that out.
I think the other thing that's really helped me that I can see in my life is explaining
(01:10:12):
in ways.
And I, and I know I mentioned this with the spoons, um, plenty in ways that people around
me that care about me and that I care about and have those relationships or want to have
those relationships.
That they can understand what I'm going through.
(01:10:33):
Um, and I want you to share that spoon story.
If you, we were kind of running over a little bit, but if you want to send it to me or if
you want to kind of give a paraphrase and send it to me and then I can push it out.
Yeah.
I was going to say it, there's a PDF that I think that we should include in the blog
(01:10:55):
post because it's, it's a lengthy story, but it is a great story about.
And so I was like, is this the spoon reference that you keep talking about?
Cause it is a wonderful summary of, you know, the, it explains how people living with chronic
illness or pain or disability and or disability, um, have this limited energy resource, um,
(01:11:22):
and expend more energy than the typical person on everyday tasks.
Um, and so physical and mental loads.
And so it's a great story.
I liked it.
I read a little bit and I was like, yeah, yeah, like that.
So we, we're going to, we don't really have the time to read.
(01:11:46):
I would love to have read it, but, um, for you guys, but we'll just share the PDF and
so you guys can read over it.
So really quickly, last question, AJ, what are some of the things that you do to cope
with your diagnosis?
Diagnosis, um, diagnosis, diagnosis, diagnosis, diagnosis.
(01:12:14):
For me, one of the biggest things that I've had to do are cut out.
And this sounds really, really bad, but I've had to cut out toxic people.
It doesn't sound bad, of course it doesn't sound bad.
(01:12:35):
Who you are around is a huge trigger for even physical ailments because it's a huge, again,
stress is a huge trigger.
So I've had to limit one around.
Like you said, I don't commit to anything anymore.
(01:12:58):
I really don't.
And unfortunately that has meant that I've had to cut ties with a lot of people because
they don't understand.
They just don't, I'm sorry, but I, I can't commit to that.
Maybe I'll show up.
Maybe I won't.
(01:13:19):
Um, physically I have to cut out or cut significantly cut back on salt.
That salt is a, I'm not sure logistically how it all works, but salt is a trigger.
So do you find that pink Himalayan salt?
(01:13:43):
I haven't actually tried it.
Actually know what?
I think that is the salt I have.
Because it's not as potent, I find.
I just barely have salt in anything.
But also, but also salt tastes, everything tastes salty to me.
(01:14:05):
So I don't like salt.
Like I'll taste, I'll taste something and be like, oh my goodness, this is so salty.
And someone's like, no, it's not.
What are you talking about?
So I don't know.
Yeah.
Um, and I don't, I don't crave salt at all, but that might be the medication that I take
(01:14:29):
to offset my symptoms or my disease.
But I avoid the heat like no other.
I don't go out in the summertime.
I'm an inside person.
I just, I really, really limit what I do now.
(01:14:53):
Some people might view that as lazy, but oh well.
Oh, that's the other word.
They called me lazy.
What?
And to outside people who don't know the struggle, yeah, I might, you and I, not you, you're
definitely not lazy.
Definitely not.
But I've been called it.
(01:15:15):
Well, they don't know you very well then cause you're not, I might be to the outside person
cause you're not lazy.
Cause I get off work and then I'm just like, I can't do anything.
I can barely cook dinner, but yeah, but you push yourself to get your house clean because
you can't handle it.
Yeah.
I can't handle messes.
(01:15:36):
And we're like, no, do it tomorrow.
And you're like, but I just need to do it.
And then the next day you're like, I hate my life.
But you're like, I know I've been there and I was trying to help.
Yeah.
It's okay.
Then she does it to me and I'm like, I, you're right.
Yeah.
(01:15:57):
So what else do I do?
What do I do?
I think that was everything.
I know you drink more water.
I probably drink more water than I should.
I probably drown myself a little bit.
Yeah, but that's really good about get like when you're working with like chronic stuff,
(01:16:17):
it gets those toxins out.
It gets your, your body filtering those things out.
And if you don't have water, then you're going to be dehydrated and then all of those things
are going to build up.
Who wants to do that?
And I think that is another thing I think that's frustrating is because to the outside
(01:16:37):
person looking at me, I don't look like a healthy person because I'm overweight.
But then at the same time, I look like a healthy person because I don't look like the definition
of like a sickly person.
You know, right.
You don't look like you're, you don't have blue or action skin.
Normal.
You don't look like you need help.
You know, you just look like maybe you eat too much, which is really rude.
(01:17:01):
But on the inside, I'm like, no, I eat.
If I eat, if big word, if I eat because eating is a difficult task for me, I don't want to
eat.
I don't like to eat.
She loves the veggies.
I know that.
I eat predominant diet of veggies.
I have forced myself to eat protein most of the time.
(01:17:27):
And so it's like, well, something's not right.
That is a key.
I want people to know that is probably if you were like that, that it might be your
oh, moment of maybe something's wrong.
It doesn't mean what we have.
It's just one of those things.
Maybe I should look into this, you know.
(01:17:47):
Yeah.
Or if you're craving the same thing all the time, unless it's like the jalapeno cheese
bowls or something or the chive ones.
Those are just good.
So anyways, but I've been dreaming about it since you shared it.
I'll bring you one.
(01:18:07):
But I do want to just leave you guys with the message.
I know I said earlier, please, please be an advocate for yourself and those around you
that you might see are struggling.
Please never give up.
Don't take no for an answer.
And find different alternatives to get that answer or start doing what it is that makes
(01:18:33):
your body feel better.
If you feel like for like being lactose intolerant.
I cut out dairy before I went to a doctor and I said, you know, I think I'm lactose
intolerant.
I seem to be OK with cheeses.
But when I drink it, I feel really sick.
And she was like, well, you could pay for an allergy test, but let me say this in my
(01:18:56):
experience.
If you have symptoms that are alluding to this and you cut it out and those symptoms
go away, you probably have it.
And I was like, well, I don't.
Yeah.
I'm technically going along with that.
(01:19:17):
And feel free to reach out to us on social media email, you know, if you want to.
It's all on anyway.
If you want our email is to mamasafterdark at gmail.com.
If you would like to, if you have questions, if you want to talk about what you may be
(01:19:38):
experiencing, we're an open door.
Open book.
Yeah.
If we don't know the answer, we might find it for you.
We'll help you.
I say might because we like, we like to go down rabbit holes.
So we'll gladly go down that rabbit hole with you.
Instead, it could be this, it could be this, it could be this.
(01:19:59):
I don't know, go see what happens.
But you're not alone.
I mean, that's what we did for each other at our at the clinic.
You know, well, maybe it's this or I looked up this or ask about this or, you know, they
gave a diagnosis to.
I mean, we did that with everybody's diagnosis.
What does that mean?
Yeah.
(01:20:20):
Go back and ask about that.
Ask about this treatment that they're putting you on because it says XYZ happens.
Ask those questions because they are so busy and I know that they want to help people.
That's why they got into that field.
Right.
They are so busy that the well intended statements are said.
(01:20:47):
They intend to do that, but they walk out that door and they are pulled six other ways.
Please know that there are people and if you don't ask those questions, then they're going
to assume that you're fine.
They're going to assume if you don't say that this happens to me after I take it, they're
(01:21:08):
going to assume that you're fine with taking it, that nothing is happening.
That's bad.
So share those things.
And if their doctor or health care provider isn't patient enough, isn't to where you're
like, oh, well, it's fine alternatives or they kind of roll their eyes or nothing happens
(01:21:29):
after find a different person.
Advocate for yourself.
Never give up.
Yeah.
I think that's our main thing.
Find out what works for you.
Be those scientists for yourself.
Listen to your body.
And if you're not getting what you need, find it.
Keep going.
Even if it's to where you start doing it yourself or you change your provider to somebody else.
(01:21:54):
I know insurance, but even with that, find alternatives.
There are so many people out there that can help you.
It's a throwdown.
It's a challenge.
We've got something for you.
So I have a challenge.
We're going to wrap this up.
(01:22:15):
I have a challenge and that is to cut yourself slack.
To put it simply, when you're stressed out, when you have all of these pressures happening
to you and you're just like, I have to take a break, take a break.
Because I have found in any situation when you are making a judgment with that anxiety,
(01:22:41):
that stress, all of that guilt, whatever is coming up, it never serves you.
So cut yourself some slack.
Because you deserve it.
Absolutely.
You would cut your friends some slack.
Cut yourself some slack.
Treat yourself the way you would treat your friends.
(01:23:02):
You've heard enough about us.
Let's get a little bit from you.
Here's your Q&A and your polls.
Sip your tea.
Let's chat a while.
The question of the day or the week, what have you learned from either your own experience
(01:23:23):
or from watching yourself or yourself watching someone else close to you?
What have you learned from the experience or experiences of chronic illness?
Or what have you learned from this episode?
(01:23:46):
So with that, we love you.
So grateful for you.
Have a blessed day.
Bye.
Thanks for hanging with AJ.
And A-Rae.
We hope we've brought a little fun, sass, and joy into your lives.
For more information about our episodes, us, and what we may be up to, please visit our
website at wanderingmusings.my.canva.site.
(01:24:12):
That's wanderingmusings.my.canva.site.
If you enjoyed this episode, please like and subscribe to us wherever you listen to your
podcasts.
Cheers to womanhood.
(01:24:37):
Ciao.
Thank you for your support of our podcast.
Original music composition written and performed by Gregory Anderson and used with permission
(01:24:58):
from Anderson Media.
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