Spoons and Ladles and Body Braids: OH My!

Welcome and Thank you for joining us. We are not doctors and we do not give medical advice. We DO share our personal experiences good and bad and what has worked for us.

The episode is a bit random and is a great example of our general randomness dealing with our chronic illness. I had never heard of the Ladle Theory so join in Amberlyn teaching me neat things. 

Please visit Mrs. Labeezy's Amazon Link to see our Zebra "Must Haves". She is eligible for a small commission if you purchase by following the link.
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_cp_ud_aipsflist_aipsfmrs.labeezy_4QNC0KVCS7YE81PGMVVW

I mentioned the Body Braid. You can find this product here.
Here's the woman who's video who helps me every time I put mine on.
https://youtu.be/_WzD6WJ6tQ8?si=jlo1rq_30lwUqGq5

We're on YouTube too: https://www.youtube.com/@taleoftwozebras

Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US

Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com

If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com

Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.

Transcript

Ann Anderson: 0:18

Hello and welcome. Gotta new students. I'm your host, Ann with my co host Amberlynn aka Mrs. LaBeezy. We are not doctors, we do not give medical advice. We do share our personal experiences and knowledge of our common shared illness which is hyper mobile EDS. We are officially.We decided maybe we should give you all a spoon writing to start our day because you know, we always look better than we feel. But do what's your spoon rating today, Mrs. Labeezy?.

Mrs. Labeezy: 1:11

All right. I'm sitting. I'm sitting at five spoons.

Ann Anderson: 1:16

Right? Yeah. Okay. Wait..

Mrs. Labeezy: 1:22

My spoon Max is eight. That's as high as mine have ever gone.

Ann Anderson: 1:28

Okay. So you're okay. Wait, I still don't think we I understand. Okay, because the spoon theory. The Spoon Theory is that we have a limited number of spoons. Yeah. And we never know how much something's going to take or how many will have. It doesn't matter what we do. We can't make more spoons. We can make we can try to reserve spoons to use for another day. And that always backfires. So we're in a spoon rating. It's more like a one to 10 day like, how do I feel? Not really, how many spoons do I have or so eight said also a

Mrs. Labeezy: 2:12

scale thing. You could do a pain scale it can, it can be interchangeable. And you can also go as far as Have you heard of the ladle theory as well, when the students are interchangeable with you know, the spoons that have holes in them. So you can go into your spoon reservoir and pick up a spoon and it's not a normal spoon. It's holes in it. So you're going into do your dishes. But let's say I go into pickup dishes and all my metacarpal sunblocks. So as soon as I go to pick something up, it all pops out and I'm just sitting here with my hands soaking wet, and hands full of dishes and all my bones are popped out. And I'm just sitting here done second guessing all of my life choices. You are

Ann Anderson: 2:58

so now the spoon theory makes is much more appropriate for me. My spoons have O's.

Mrs. Labeezy: 3:06

Yeah. These happen, man. Okay,

Ann Anderson: 3:10

now now I know. Okay, so your, your max is eight. That's where we're at. Like,

Mrs. Labeezy: 3:18

I have never had more than eight spoons. And the biggest thing with the spoons is I know that the ladle days like the big spoon days are the days where I wake up and I'm not nauseous. I have minimal joint pain. I never wake up without pain ever. So when I get up my popping is to a minimal where like I have some popping my knees as I'm walking, but it doesn't hurt as bad. So I can ignore it. You know, my shoulders are cracking a little bit but they're not fully subblocks like right now and I move my shoulders, there's some tightness, but they're not grinding as bad as when they do after 7pm. So I would be able to do laundry right now. I will be able to go upstairs and pick some things up. But like days like yesterday, I struggled to pick my arms up high enough to be able to get myself into my bed. It that was a two spoon day. And that was enough spoons to be able to get myself to and from the bathroom all day.

Ann Anderson: 4:24

Okay, I got to know. Okay. We'll say I'm at a five mentally I think Matawan because it started off very rough, with a very, very difficult phone call to someone who argued who did not have fax. And then let's just say it wasn't the same gender and he has four years experience. One of those. I was like, Can I talk to someone else? I can't transfer you I said because you don't know now.

Mrs. Labeezy: 5:10

There's a button

Ann Anderson: 5:14

that's double that was going to be a tick tock here. Here is the secret If you call Medicare, and it's not going well, because maybe the person thinks they know more than they do. And you asked to speak to someone else, not allowed to transfer you to a different, like a linear move to direct, you can hang up and call back. But here's the deal. I said, Well, I don't want to hang up because I said, I would take a survey after this. And I definitely want to take a survey about you. Right? And he's been interrupting me, he's been like, remember different, there are different. I'm like, No, rubber ducky said Right? To talk. Now. If you are talking truth, I will let you continue. But you on? Not so I have to, you know, that's what I told him. He's talking, he kept interrupting me, because what he was saying was wrong. And I was like, Yeah, give me your documentation. That's wrong. You're wrong. You're wrong. I've been doing this for four years. I've been on Medicare for 20. Dude. You don't get to Trump me now. And so we are having a very bad conversation. And so he says he can't transfer me. And I say, Well, I'm not ending this call. Because I want the survey. So you can disconnect now. That's your option.

Mrs. Labeezy: 6:45

You give him one.

Ann Anderson: 6:48

You went silent. I so but we were still connected. So it wasn't letting me talk. I read to him. That which pertains to my situation of being under 65. on disability, and having group insurance through a spouse. When you're under 65, not retired, but receiving disability. And you have a spouse who has insurance, the company employs less than 100 is secondary. See, all I wanted was to add the secondary. He said, they're not secondary. I'm like, That is not what I called about today, dude. Right? He's like, No, it they have to do to under 20. I said, that's that right? Yes. It has been her for years. Oh, my goodness gracious. All right, Richard. Richard, do you need to listen to Gerard I read it. And as I'm reading it, he comes back. And he's and he's like, I'm obviously Barbara Norbert Obrador. We have different information. I said, You didn't ask. You never asked for any of that information. I said, I was at a secondary and he launched into what you considered right information and wouldn't. Okay, so then what does he do? He says, Would you like to talk to a supervisor? I said, wouldn't you need to transfer me?

Mrs. Labeezy: 8:32

Oh, the irony.

Ann Anderson: 8:36

What am I missing here? Okay, this is the trick. You cannot ask to talk to someone

Mrs. Labeezy: 8:44

else. But they cannot hear you.

Ann Anderson: 8:48

They are not supposed to offer you a supervisor. But if you ask to talk to a supervisor, then they can transfer you to a supervisor, which I don't know, in a lot of call centers I'm aware of that's the idiot and then next cubicle, but literally, but okay, you're going to transfer me to your supervisor, who was very keen on letting me know that he was following the rules that they cannot transfer to other people. Of course. Yeah, that's really not what I had to complain about. But I'm complaint is I asked him to disconnect. So I could take the survey, he wouldn't disconnect. So and then, finally, he transferred me to you. And so I wanted to take the survey. Did you get your question answered? I said, No. What was your question? Okay, so when a crossover gets set up, and then it's stuck in setup land and the third party SharePoint program, do your people have access? Like, could they reach in and get it? Like if I told you and I confirm that it was there, that you coordination of benefits people reach in and compete it? Yeah. No. Well, then how does that happen? How does Is it magic? Come on, guys are like, it'll just show up.

Mrs. Labeezy: 10:25

It just magically appears one day.

Ann Anderson: 10:28

I've been working on this for a year, the secondary took over March 1 of 2023. My gosh, well, it can take up to 60 days. I was told 4560 days I said, so. I wait for it. No, no, we're not. We're heading up to real fast. Like I said, so no one's gonna go looking for it. No one's gonna pull it. They're gonna come to work one day. And then their coordination of benefits. They're gonna log on to their computer, and they're gonna say, Oh, look at these new 2000 people who who qualify for SSI.

Mrs. Labeezy: 11:13

Right. Just one day. They just appear.

Ann Anderson: 11:18

Yes. Okay.

Mrs. Labeezy: 11:20

That makes no sense. Yes,

Ann Anderson: 11:22

what you know, are higher on the conversation. The government doesn't have to take any responsibility. We have no responsibility or no way to add or remove any insurance. Interest. What is really interesting, so, Richard my brain spoons are spaghetti. By their they're just all noodley and

Mrs. Labeezy: 11:52

Richard stole them. He's

Ann Anderson: 11:55

been there for years.

Mrs. Labeezy: 11:58

Yes, and you're ready. Oh, my God. Four years.

Ann Anderson: 12:04

Oh, wow. You're so wise. I will me all of your wisdom, Richard of four years. Richard 65. And don't know diddly squat and apparently you'd like to bullied. barked up the wrong tone of your request. Oh my gosh. Okay. That was a long time. What are you working on today?

Mrs. Labeezy: 12:31

Um, well, I I made this zombie duck that's very, very cursed. And I love I love him. And then I started, I started making a heart and then I squished it and put it back in the clay because I didn't like it. And then I started making this stuck. It's another zombie duck. I really like making the zombie ducks. I don't know what it is about them falling apart. And I've resignate with them. So there's an eyeball made out of clay and then another worm. So I'm doing zombie things. What do you make?

Ann Anderson: 13:16

I am working on a bubble blanket. Who have bubble stitches. And what's nice about them I gave a I made a muffler out. And my aunt pushes the bubbles in. And then she then she pushes on the other way, as she tells you like inside out and she just keeps and it's quiet and it's so warm. And she's got you know, rheumatoid arthritis in her hands, and it's terrible. And she's happy. See, that one's probably favorable blankets.

Mrs. Labeezy: 13:55

I cannot do with the plastic puppets because when I did PTSD therapy, that is the Fidget that I used while we were doing it. So that emotion is associated with bad memories.

Ann Anderson: 14:07

Wow,

Mrs. Labeezy: 14:08

I wonder if I could do that one. Because it's a different. It's a different texture, different motion.

Ann Anderson: 14:17

And it's not the same pop because like the plastic is like a pop. This is like a squish.

Mrs. Labeezy: 14:25

Yes. And I love the way that it looks. It just looks so soft

Ann Anderson: 14:35

these are made of wool, they're not so soft. They're really really warm. Oh, I'm excited. I'll have to make some out of this type of yarn.

Mrs. Labeezy: 14:44

I'm totally gonna here to drop off my kids at school in the morning too, because we've had the top off for the last week. So it's so cold in the morning.

Ann Anderson: 14:54

I um, the pattern that I got, it did allow or at least maybe it's not the pattern I got. I get patterns and I use them kind of like a recipe where i i It's it's a loosely based thing. Rainbow zebras, you keep the you keep the one color either white or black but then you have the rainbow going through it And then the main is the rainbow without the sun i i thought your your daughter or little little ones, my boy rainbows.

Mrs. Labeezy: 15:30

She loves everything rainbow that girl. So

Ann Anderson: 15:34

I got ideas.

Mrs. Labeezy: 15:36

Yeah. Let's see that I love your creative outlet with yarn. I have so much yarn that I'm gonna send your way because it's been sitting here for a while and no one's using it. Because

Ann Anderson: 15:53

Okay, yeah, I'm just gonna send it to you. Okay? Yes. All right, so we got our projects. And once you're done any good news this week

Mrs. Labeezy: 16:11

not that I can think of I had to go do a bunch of lab work this last week to try and figure out what flavor of small fiber neuropathy I have. Um, I finally have a good neurologist that is really motivated to figure out a good bulk of the symptoms that I'm starting to experience. I have not experienced a lot of the nerve symptoms that I'm experiencing now. And what those are, it almost feels like there are electric fire ants biting me. And it will happen all over my body. Now it used to just be my legs. But it happens mainly on my joints. But last night, it happened like on the front of my pubic bone. It happens on my arms that Oh, it'll happen on the side of my neck. Um, and we don't know exactly what is causing it, we're hoping that if it's autoimmune, it's going to be fixable or at least helpful. Bye IVIG infusions, but that was only figured out a bowl by doing a plethora of labs and then going back in for follow ups. But it's it's the whole tale of, of walking down the long narrow road of what door are we supposed to go into and figure out which, which form of treatment we're supposed to be doing? It's exhausting and tiring.

Ann Anderson: 17:54

I think it's good news that you are able to complete it because there were some feats of strength and, and and things that require are required, if I recall correctly, that were scary. And you were able to do that stuff, you were able to complete the tests that were really really hard. Yeah. So I think that's

Mrs. Labeezy: 18:20

the, one of the biggest one they had us they had me do all of them are fasting, which normally you don't have an issue with, but they had me do glucose testing just to make sure I'm not becoming diabetic. And with that they have you drink a glucose solution, which is a bottle of basically sugar water in it tastes like a flat, sugary soda. And you have to drink that within 10 minutes and sit there for two hours, and they draw your blood up. Draw your blood again, and I was so scared that I was gonna get sick, because I do have gastroparesis. And anytime that I drink liquids quickly, or I just drink liquids, period, I get sick. And my stomach just does not like when things enter it ever like so. It's a guessing game of Hey, are we going to play nice today? Are we going to play games? Yeah.

Ann Anderson: 19:23

That's, I'm sorry, that made me laugh because last just last night, my loving husband. I was like I did to flu. I did two liters of fluids through my report last night and I one of them was spiked with vitamins. And um, I haven't paid yet. He's like, I don't ever see you drink. I was like, Oh, he's like maybe you should start drinking water. I'm kind of snarky these days. If it didn't feel like I was gonna die every time I drink the water. And it makes me so sick. i Yes, slow nauseated. He's like, Okay, I didn't say water.

Mrs. Labeezy: 20:12

I'm like, okay, so all the sugar, which is giving you it made me even more sick. Okay. ate? You

Ann Anderson: 20:19

know, I had I'm not in sharing my weirdness. I have extremely low sugar. So it doesn't help you? Well, no, because I told them story. Yes, the deal. I, I have TPN or did I get? It is liquid sugar going straight into your heart. And then though the worries is that you'll become diabetic, so they want to check your sugars, and I'll be in the hospital. And I'll have infused em infusing as they're taking the blood sugar. I never cracked 100 And I just was getting symptomatic and they tested my blood. While TPN is going in. It's at 60. And they're like, oh, no, we'll give you glucose tablets. Okay, you can swallow, right? Why does everybody asked if I can swallow? That's not where the problem lies, right? In. Yeah. So yes, I can swallow. Okay, here, here, take these two glucose tabs, and I'm jumping on them and getting them down. And they give it however much time they're supposed to. And they take my blood again, there. It's 53. Surprise, surprise, I told you guys. But nobody listens. Yeah.

Mrs. Labeezy: 21:54

How do you how do you meant that? Because I mean, if you even with TPN. And if you don't absorb sugars, as is how are you supposed to get sugars?

Ann Anderson: 22:10

Well, it was through TPN.

Mrs. Labeezy: 22:14

And it was like, were you absorbing it enough? Through that?

Ann Anderson: 22:18

Yeah, enough. Yeah. I mean, my labs are still totally oak and I'm still low on everything. But they stopped the TPN. And they also stopped all the medications. So I'm trying to mitigate a hospital visit for withdrawals.

Mrs. Labeezy: 22:46

Yeah. And are you now officially off the Benadryl as well?

Ann Anderson: 22:51

Yes, I had. Yes. How

Mrs. Labeezy: 22:54

was that going? That's been my biggest fear with you. Because that that has the capability of hospitalizing you. Yes.

Ann Anderson: 23:05

Um, I went to PubMed, which was medical publications that are for in so I researched Benadryl withdrawal. And so the scary thing is I also just recently started seeing a psychiatrist, and they put me on a liquid antidepressant. And it's not one that's good for my genetic testing. But who cares because it's liquid, and maybe I'll absorb some. Right. And they said, The problem is, often people don't know they're dependent or that they're, that they're abusing, because they'll get it off the counter now, I'm not abusing it as prescribed. It's on my list. So psychiatrists, man, you see that I take IV, Benadryl, and you prescribed a medication that counter dicks and sends them into psychosis worse, because of serotonin, I don't know. So, here's what we have to do is zebras. I am going to the doctors who are supposed to be the experts, and I want them to be the experts and I can trust them. And they, we can't prescribe this, the DEA is dinging us. You have to stop this. So yank it away and follow up with your psychiatrist. And I found an article that talked about a person who came in with psychosis and heart issues. And so they were given them heart medication, and then psychosis medication. Which was a really, really, really bad combo. That medicine is one of them. So I stopped taking that last week, and I tried my hardest to make the Benadryl last as long as possible. So they say withdrawal can happen 24 to 48 hours. And I've been doing the fluids and I am hoping I mean, how many hours out are you?

Mrs. Labeezy: 25:22

How long have you been off of the Benadryl now?

Ann Anderson: 25:26

Last night was my last dose. And so I

Mrs. Labeezy: 25:35

although they say 24 to 48 hours is the amount of time for withdrawal periods because of the longevity that you've been on Benadryl? Your withdrawals are going to be longer. Yeah. As as much as I don't want to have to say that.

Ann Anderson: 25:51

Yeah, that is another issue. Yes. So they I don't know. If it was like, Can I like, put myself into the hospital for like, safe monitoring? Can you help? Yeah. sponsibility for this? No. Okay. Seriously?

Mrs. Labeezy: 26:15

Like they honest they, with you going through withdraws. That is a safe ask to ask. Oh,

Ann Anderson: 26:23

oh, um, they don't do that. They don't know. If I have the know. No, that's not how that works. So sorry. I'm sorry. It's not something that I talked about. That's what we survived. We survived. Did you know there's a cut there, there's a connection. is dripping sarcasm flag degenerating between the brain and pain? No, you just don't think about it. I am a genetic sir. I'm going to just go outside and drink from the hose. And here's my other thought, honestly, honestly, to quell the nerves. When I saw that, Benadryl and the, the antidepressant that they chose for me, are vinegar. And, you know, that was a bad thing. I thought, you know, that's for normal people. Yeah, it might be the utter perfect concoction for me.

Mrs. Labeezy: 27:32

I get that. Wait, like, yeah, absolutely.

Ann Anderson: 27:37

Why if I can't research regular stuff, because it doesn't apply to zebras the same? This is this is the same that I can't apply this all. i Yes, I've done the genetic study. And I already know that this antidepressant is not a good fit for me, but I don't have choices. Right?

Mrs. Labeezy: 27:56

Well, I feel like we do that a lot within our community too, just in the aspect of grasping for straws. Because you are given such a limited Avenue, like amount of avenues to go after. So you do grasp but you can get a new goal with it. So it makes sense that you went down that path. I don't blame you at all. Make sense? That's

Ann Anderson: 28:20

how I'm making myself feel better. I did purchase some some children's liquid. So if I feel like if seizures start if the anxiety is already there, but if it right to talk about psychosis. The full meltdown last night I think definitely was part of that. For sure. But I'm, I'm here, I'm, I'm

Mrs. Labeezy: 28:53

working to make it through this.

Ann Anderson: 28:56

Yep. That's my biggest concern for you moving

Mrs. Labeezy: 28:59

forward is going to be your MCAT symptoms. After the withdrawal symptoms and everything is done. You're finally going to see how bad this shit truly is. Because you've had all your MCAT symptoms muffled. You still have them there. But they've been muffled.

Ann Anderson: 29:17

I know that, you know that. And that I am at palliative and I'm like, can you please help me? Will you please help me do this safely? And they said no. How dare you ask? How dare? Did you? These were the words. Did you really think that you could come in here and make that ask? We don't do that. They said that. That's not our deal. That's not so you don't you don't you do acknowledge that I'm dependent on this, which I didn't know was an option. But all right, but you're not gonna help me? No. Okay. Okay, all right. So that's cool. You're not gonna help me. Um, there was something else you said.

Mrs. Labeezy: 30:11

It was just the the biggest concern was the your M cast reactions follow? Yes. Yeah,

Ann Anderson: 30:19

yeah. Because what I told her was that I said I, I realized now that I will need to get back to so I'll be going back to square one, I will be going back to my severest of M cast my severest of dysmotility. Like everything is coming to a grinding halt, and I'm going to have pain and yep, it's already there. I've been we have a limit. For me. Pain is 10. Is that is where I'm screening. Right? And writing

Mrs. Labeezy: 31:00

for your answers.

Ann Anderson: 31:02

But that has to last more than four hours to go to the hospital. Yeah, and now we've extended it because they don't care or do

Mrs. Labeezy: 31:13

so you're not important enough to them. But

Ann Anderson: 31:15

what the what the but the palliative when I told her that it was going to go it was gonna revert. She's like, you can't think negatively like that. Okay, so we're looking at it for what it is. Right? So with your think positively and then I'm fine. This pain is not pain. No,

Mrs. Labeezy: 31:44

no, it's all in your head. You see, with your interest. Do you get the GI issues as well like the like rapid gastric emptying? Or is yours like the anaphylactic. What do you experience?

Ann Anderson: 31:59

Both? Both? Yeah, I'm very, I would say that the like, I remember, in the last year being in the mall, and there was a new restaurant that was doing seafood. And I live in the Midwest, so yeah, I don't think that's a good restaurant. But right. I wasn't gonna stop there. But as I walked by, all of a sudden, my throat started to close, holy shit, not in a situation that I'm in. Often I'm like, Oh, no. And then there's been a few other things that have started to close the throat. And so I do have an appointment with an immunologist. And we're going to talk about the epi pen.

Mrs. Labeezy: 33:01

Are you on any other type of allergy medications?

Ann Anderson: 33:06

That I can swallow? You

Mrs. Labeezy: 33:08

right? Can't pharmacies create? Are there?

Ann Anderson: 33:14

compounding pharmacies? Yeah,

Mrs. Labeezy: 33:15

compounding pharmacies to where we could make like. Like, are there liquid options for like Claritin or options like that? Are those do those exist?

Ann Anderson: 33:32

They exist that I did buy the liquid Benadryl. I do hold liquids, medicine, medicine under my tongue as long as possible because it seems to be the area where I might have some absorption. And the compounding pharmacies, I saw a specialist because I went through menopause. I was like, Hey, guys, I'm really not okay. Can you like check? Because I had the hysterectomy when I was 30 to go, Yeah, you're in menopause? 100%. Cool. Could that be why the TPN is reacting differently? And is that part of the problem? Yes. And we're gonna send you and they said they they were so sorry. But there was nothing they could do to help me. I said, What about compounding? They said, it won't help you. Because lidocaine doesn't help you. So obviously, your dermal layer is affected by your EDS. And so since lidocaine and Novocaine and that stuff doesn't work with me, they feel that topical stuff will not work for me. And I'm allergic to a lot of the patches and stuff. So that's all I've heard for the last year, and that's why I got off TPN and I told my doctor I was doing that because I was giving that

Mrs. Labeezy: 35:08

What about allergy injections like, like, injection like schedules like I know my allergy. Just offers those for like I my allergies, not severe enough to require those. Well,

Ann Anderson: 35:25

M cast isn't going to be shown on the allergies. So seeing the allergist, I don't know what we're going to do about that. I, I saw the rheumatologist to apparently gave my two doctors a smackdown is that the one doctor, all of a sudden I have the allergy of the other doctor, I went to the portal, and I literally have a referral that is active for every single subset. Oh my gosh. They didn't think they got there like this woman needs help. So we're just going to refer to everything. There's no reason there's no reason you just like checkmark the boxes and then made a mistake deal. Was that our learning? Or do you want to talk about why one was to get diagnosed with learning? That was that was that was a lesson in perseverance, guys. It is it does. It takes perseverance. Oh, and then I think I didn't share. The last I was left with my palliative doctor. She said that there's only three other patients like me, and that they quote go all go out of state.

Mrs. Labeezy: 37:03

Wow, that's reassuring.

Ann Anderson: 37:06

So you're telling me to go away? Okay. You're not going to take you've said we don't do this. So that's what they get to do, at least in this state. They get to say I'm not comfortable. I'm not going to do that. Find somebody else. In fact, everybody I know who like you goes out of state go out of the state. What type of resources do you think everyone has? I don't know what they are talking. I do know what they're talking about the expectation that that's reasonable. Like she asked me? Did you honestly think that you could come here and ask? honestly think I could come and ask for you to help me to safely get off on medication I've become dependent on because it's the only thing you'll allow me? Yes. Did you honestly think that telling me to go to another state is a reasonable expectation? I mean, sure. Throw it out there is like Have you considered going to another state? But you didn't throw it out? There isn't? Like have you considered because you don't know if I have the resources or not? Because you don't want to problem solve? If I don't have the resources to do that, if, in fact you are at the end of the line as palliative often is. But no, that's they said when I met with them two years ago, and started this that the way they would handle it is if I got quote bad enough, they would slide me into hospice. Okay. That was, yeah. Let me slide me into hospice now. I just don't

Mrs. Labeezy: 38:51

understand, like, how would they feel if they were treated this way, I can the exact same position if they were to walk in in your shoes, and were talked to and treated this in this exact same way. You know, it, it baffles me because it's almost as if you're not giving any, any regards to your life. It's not even worth their time, effort, any of that. And it's just not. It's not fair, because you are worth that. And it is worth their time. But it's, it's just, it's more work for them. And it's more than they're willing to put into it. And I feel like our medical system has become this machine. Where if you don't meet their check boxes that they're trying to check off in this appointment. It doesn't fit in the box. They push it off and you move on to the next person because they're going on to the next box.

Ann Anderson: 39:55

I will share a very on kind on popular but it's difficult because I thought at one point that cancer is something that everybody can relate to like everybody's scared of it. Yeah, you You know, when you say someone has pancreatic cancer or stomach cancer and they can't eat, oh, that is you can't eat what? But in the gastroparesis community, it's like, why don't you just eat? Why, just why can't you do this. And then I saw it was shared that there's oncologists now that are refusing to prescribe pain meds to cancer patients, specifically pancreatic cancer, which is I think it's a common knowledge thing that that's one of the most painful cut types. So the the oncologist, and this was on the East Coast wouldn't prescribe pain meds. So the wife took her husband to the ER, only to learn that on the low down low, and I want to research this. The hospital had gone to a no opioid status in the entire hospital. And they're doing that on the East Coast. I don't know if you've been at a children's hospital recently.

Mrs. Labeezy: 41:26

Not recently. Our our

Ann Anderson: 41:29

area Children's Hospital 10 years ago, plus, they went completely sugar free. So like all the vending machines, the only options were sugar free. They didn't have any, like coffee creamer was sugar free. Everything was sugar free. And they were part of a study and they were getting money for doing that to see if that would help curb the diabetes. In children. No,

Mrs. Labeezy: 41:59

it doesn't they just get it from anywhere else.

Ann Anderson: 42:04

Well as one who struggles with their sugars,

Mrs. Labeezy: 42:08

oh, my god, drip

Ann Anderson: 42:10

and had a child there. And I also don't get it being in the hospital most recently. I did I do have celiac diagnosis. They didn't have a single gluten free option. That's our lesson for today. Perseverance or stick barons? And I mean, I think that getting the diagnosis is still worth it. Because at least I know that my my brand of crazy. And if they don't want to work with me, that's not my fault. It's like my traumas, not my fault. But it's my responsibility to heal from it and right, like this diagnosis, and their treatment or lack thereof is not my fault. But I still need to persevere, I still need to try. And that's what I do.

Mrs. Labeezy: 43:03

Right? It validates it and it it tells you and explains to you exactly why and how everything is happening. And it explains to those around you what's going on with you. Um, and the biggest thing that I've found, especially with having children is explaining to them what's going on with their bodies. All three of my children did get EDS from me. So you know, they're at the point in their lives where they're very, very bendy. Now they do experience pain here and there. It's not constant yet, thankfully. But growing up, I didn't know what that was. And I was just told it's growing pains. It's normal. So I didn't understand. We now have the knowledge and understanding to where we know what to avoid to where we don't make the long term damage and mistakes that I made. And it helps. Yeah,

Ann Anderson: 44:00

definitely. So I would say to parents, can we please believe your children? Yes.

Mrs. Labeezy: 44:10

Like oh, man when I was a kid.

Ann Anderson: 44:13

Yeah, the Novocaine didn't work. And the dentist was like, it's just pressure. I'm like, It's pain. And I was screaming and that was back in the day when parents didn't go to appointments with kids. I walked myself there. But the doctor the dentist told my parents your doctor, your child is sensitive. She says the didn't more but it's just pressure and letting it was excruciating pain. You porcelain. No. Why did why would why would they listen to a child versus a doctor? You're just lying. I mean, that was over 40 years ago. Didn't question doctors. I do not blame my parents. Please know that. Grace not so yeah, but if your kid says Mom, this really hurts like you only took two steps. Can you try running? No mom, I took two steps and it hurt and my ankle twisted. Oh, you're the clumsiest person in the world. Watch that, that that saying that you can't walk and chew gum That hurts. Well, there's a reason usually, to say it. Possibly. I

Mrs. Labeezy: 45:25

have two very, very accident prone children. They run into literally everything, and especially my middle one, he does have ADHD. So he does we call it the swerve where you'll be walking in a straight line and half of his body will go around an object and then swerve around it. But every time when he comes home from school, you'll hear out Oh, and initially, as a parent, you want to say, like, How in the hell are you hurting yourself that damn often? I want to so badly because like, I kid you not. And it is constant, like not, if not hourly, every half hour is hurting himself. And I'm like, Bro, are you okay? And I, it, it took me it was maybe two or three years ago, I truly sat back and I was like, Bro, are you good? And he was like, No, I am so frustrated. I run into everything. And then I stubbed my toe. And then I hit my elbow on this. And then I run into this, I hit my head on that. And I'm like, Oh, my goodness, stock up on ice packs. They there. It's called proprioception they, they don't have it, you know, their their vestibular is, it's not fully formed. And especially if your children are neuro spicy. Our, our brain is not quite balanced. So I mean, I know if I'm tripping over things. Someone that's half my size is gonna be tripping over things double as much. Okay. It's one of those things where I've come to learn if I approach it with love, caring and understanding. They know that they can come to me upset knowing that they're going to get that love and comfort rather than getting picked on and make the feeling worse than the fact that they're already having a shitty day.

Ann Anderson: 47:37

Oh, yeah. Well, I I saw a physical therapist out of state who specializes in EDS to do an evaluation. She's phenomenal. And she made a comment, like you have a phenomenal body awareness. I was like, is that not common with EDS? And she said, No, most of her clients really struggle with body awareness. And she explained it to me that since we have the joints that really don't know what to do, they didn't they don't respond, like, Hey, today, I'm going to put in this much effort to lift my knee to avoid that step up to my house. Mm hmm. I did that I it's automatic. I did it. And I tripped. And I hit something that dropped why? And it was because today, when you were maybe it was sitting in your in your class, and you wrapped your leg around the leg, the leg of the chair. And then your body got really tired because it was tensing up trying to keep your feet straight. And then you're on the bus. And like you sat on the other leg because that leg was kind of hurtin and so you were like pushing down on the bus and you're sitting on the other like, apply Conner counterpressure. And then you go to get home and you go to step up into the house and go Tripoli trip trip, but pretty BUMP BUMP Bippity boppity. Boo,

Mrs. Labeezy: 49:05

yeah. And it's never related to more than anything in my life.

Ann Anderson: 49:13

And you're not gonna see that pattern. You're not gonna recognize that pattern. Maybe until you're in your 50s Right. And you're like, you know what I sat. Today I was sitting and I was sitting with my leg wrapped around that the leg of the chair. Oops, that's

Mrs. Labeezy: 49:34

not the best move. I can't sit crisscross applesauce anymore. You know, where you sit with your legs like over each other? Because the way that my ankles turn just a little bit. I've learned that the outside of my ankle bone subluxed is out just so that when I stand up, they sell books healthfully.

Ann Anderson: 49:58

I did try I have I have the body braid Amberlynn. Yes. It is worth it.

Mrs. Labeezy: 50:05

I'm getting on with my tax returns. Okay, good. So,

Ann Anderson: 50:10

yes, I would say there's a lady I'll send you up all I'll make a note to link to the Body braid lady. I don't know why her explanations of putting it on click. But like, I follow along with her, and I get it on right every single time. I tried to do it on my own. Your magic is, but I'm just gonna follow along. That's my god do.

Mrs. Labeezy: 50:41

Honestly, if you can follow her, then I can like, I think we should do that for one of our podcast. Like episodes, we should do the body braid and go over it. It would be Yeah,

Ann Anderson: 50:50

yeah. And what I really liked about it, I'm gonna do I don't this is not I don't have a deal with them. Guys. This is not commission based. Please know that. What I love about it is that it's 100% adjustable. And so if my lower back is really struggling today, I can give it more support if my shoulders if my legs if, today i i tend to have mast cell reactions, that balloon me. And my body and I and all of a sudden, I'm like three sizes bigger. I'm an I'm turning into a blueberry. I don't know. But that's what happens. And the body braid accommodates that. I don't have to, you know, worry, I can just loosen it. Because every single time you put it on, you adjust it. And to me that's also a lot less mental. Because when you have a belt, you know that you put it on the third notch, right? Right gay that you have to put it on the first notch and you're like, damn, the body brain doesn't like that. Because it's undone completely. And then you redo it and whatever is comfortable, it's comfortable, there's no notches, it's just adjusting to what's manageable for your body that day.

Mrs. Labeezy: 52:15

It's what I'm excited for. I've been able to wear my CAFOs since gaining weight with EDS your your weight and yo Yos so much. And when I originally got fitted for my CAFOs I was at my lightest with my gastroparesis. And with my weight getting heavier, my cables will pinch the insides of my thighs when I walk with a body braid, I'd be able to wear it in between all of the weight yo yoing. So I'm so excited about Yes,

Ann Anderson: 52:43

yes, definitely. And someone asked today about a waist compression. Apparently you can get waist compression like for for men medically. And she was saying she has a super long torso. And for feedback. So I gave feedback. Because my husband is six five and I'm five nine. We have the same inseam his body then I think Dr. Gumby and him like have the same that really long torso but not so long legs, but then I have the really long legs. Well, one of our children got it all. I was able to get recommendations and long bodies and guess what? The body braid manages that too. Yeah. It's like it's not a one size fits all because the arms they give options for small, medium large. And it has more to do. I think with your wingspan and it does maybe circumference.

Mrs. Labeezy: 53:56

Oh, that makes sense. So excited though. It's such a cool option. I've been eyeballing it for a couple years now. Cool.

Ann Anderson: 54:05

And here's my weirdness. Also gloves. You have to take this finger out because this is the power finger for if you're a Mac the Mac user power finger

Mrs. Labeezy: 54:17

why are we wearing gloves?

Ann Anderson: 54:20

Yes because of when you do yard work and it's there's 70 degrees swings in our temperature here ah in the Midwest and there's dryness and the heater kicks on but the humidifier doesn't. I have I have hands that that need to be moisturized and protected because they're damaged.

Mrs. Labeezy: 54:50

Do you have written on to?

Ann Anderson: 54:52

Oh yeah, that. Yeah. You know what I think is so weird. My were nods is the worst when I'm taking a shower and I'm hot. Get cold. I am beautiful. My hands and feet are purple when I get out of the shower not red. Purple.

Mrs. Labeezy: 55:13

That's interesting. My my legs will turn bright red and purple. But it's fun. actually like when I work out all of my skin turns bright red and all adrenaline dump too though.

Ann Anderson: 55:27

Well, I feel like we're not just the blue and the purple. The Red was like the swelling but yeah

Mrs. Labeezy: 55:36

it's cold for me it's not the hot

Ann Anderson: 55:41

that's what it's supposed to be that's what I'm telling you those purple what? I'm hot it also goes purple when I'm cold. But that was that's what it's supposed to do.

Mrs. Labeezy: 55:52

In your broken

Ann Anderson: 56:04

language Yeah, okay. This has been fun thanks for having this lovely chat with me. Thanks. I don't know what people are gonna think of us now and I don't care. They love us for it. Though, we will weird are trying but did you know when you try to get to spoonies and deeper soup boonies together. It's really hard, you know? spoons, and zebras and tests and pain. And I don't know when enough medicines that you're not actually being weaned off of you're just like cold turkey stopping and so who cares? Really?

Mrs. Labeezy: 56:50

They're cold turkey you they're not cold. They're not weaning you.

Ann Anderson: 56:54

I know. I know. So. We love you guys. And if you think you're weird, you're not alone. If you have mean voices in your head, as our favorite Gunkel would say tell them to fuck off. When they're really loud, calling resources calling your support team. You need cheerleaders. We got cheerleaders. Get yourselves a cheer squad when you can't do it yourself. It's okay. We asked for help. like starting a whole bunch of stuff because I gotta tell myself it too. So we'll see you next week and an ambulance gonna sign off with her signature. Bye bye