update & hello. I should be sleeping. #fyp #chronicillness #chronicpain #gastroparesis #advocate

本站添加: 2026-05-29

[00:00:04]Hi guys, I'm live. I'm just going to share that I'm live on a All right, now I can All right, now I can do this, right? Hi guys. Sorry that it's like the way it is. Hold on.

[00:00:21]Got the retouch and the lighting on.

[00:00:26]It's late. So, it is late, but I wanted to like do a live and all of that cuz normally I don't go live at 1:00 in the morning. But hi, I'm Christina Lundelle.

[00:00:41]Um, hey guys, welcome in. I'm Christina Lindell. Um, wanted to do a little live update talk. How's everyone today? Please don't forget to like, subscribe, share, hit that notification button. I'm Christina Lindell. I am your Wisconsin night gastroparesis warrior and then some. Um, gastroparesis is stomach paralysis and that's what I have. So, hello. Welcome in. I have many um I have a lot of followers or subscribers but not a lot. So, I don't know if all of them will come in cuz it's 1:00 in the morning. Thank you for coming in. How are you doing? I saw your chat. Hi back room. How are you? Welcome in. And yes, I will sh I will shout out your name if you're kind. Everything my last live at one point someone was actually kind of mean to me at one point. So only because yes, I have a G tube. I have a feeding tube. My feeding tube right now I don't have hooked up but it's right over here. Um you're doing great. Well, that's good. Um I am I could be better but I'm doing okay right now. I'm in pain. That's why I'm not asleep. Um, this is my wheelchair over here. I want to show you guys actually what my mom got me. Let me show you. Hi. Hi, Hie or Haddie.

[00:02:02]Hadling.

[00:02:04]Trying to say it. Sorry. But this is the what my mom got me for my wheelchair.

[00:02:11]So, I like it. She got that for me. This is my new wheelchair. people hadn't seen it yet. That's actually the bag holding my G2 bag right now for my bag for my stomach contents. But yes, this is my this is the um my heating pad that has a battery pack. Um I really like it. It's actually the uh I'm trying to remember the name of it. It's the something five. Um I can't remember the name. And I've got on the back it is purple actually on the back. You can't really see it. Hold on.

[00:02:44]Hold on. I'll have to hold it a certain way. There you go. It's purple.

[00:02:50]I don't know if you can see it.

[00:02:53]I'm sorry. I was trying to show it, but yeah, I have this stuff. It's legal for me. I can do this.

[00:03:02]Um, I love you, too. I don't know who you are, but I love you. Um, I share a lot of love and light to people, so I'm very kind. As long as you're kind to me, thank you for the likes.

[00:03:14]So, all right, let's get into the nitty-gritty of my update. I've got five of you in here. I'm glad to. Um, so where do I start? I have autism ADHD as well, so my mind has to recenter after I start alive. So, I'm trying to go where I start here. Um, oh, I'm on potassium now. can't really show you everything like my you know whatever but um potassium um by G tube but the thing is is I have to like open it after 5 minutes because my stomach does not like the potassium even though you have to dilute it and it's I'm on 7 is it 7.5 mil milliliters by mouth three times daily for seven days um My potassium keeps going very low and I can't eat salads anymore. I've been trying a while ago. I had to stop. Not a long time ago, but just a little while ago because it was not working. Every single time that I eat, I'm getting sick. And so it means my disease has progressed. Basically, that's what that means. Um having gastroparesis or stomach paralysis is what I have. Um someone told me to eat a cheeseburger.

[00:04:37]It was very demeaning. So, shame on them. Anyway, yeah, I've had some comments, so that's why I'm not very good at doing a live like I wish I could. Welcome to the 32 of you in here.

[00:04:49]Love and light and thank you. Um, but yes, gastroparesis is stomach paralysis.

[00:04:53]And talking to my doctor, I even asked her because I had over 48% left in my stomach when I had my gastro emptying scan. Hello, Patricia. Welcome in.

[00:05:05]Please don't forget to like, share, subscribe. Um, trying to grow my my following. And, uh, I'm a singer songwriter, too. But this is going to this platform right here I want to use mostly for the education and advocacy of what I've went through and what I'm going through and how it's progressing.

[00:05:23]And I'm going to be going back on paliative care. I don't know what it's going to go from there. Um, I have a DNR. Um, that's not an update. I've had the DNR for a little while, meaning no life uh saving measures would be used on me. I am 37, almost 38. I'll be 38 in July.

[00:05:47]Especially, it's funny how there's nine people in here. July 9th is my birthday.

[00:05:50]So, I'm a Cancer. Not that everybody cares about stuff like that.

[00:05:55]Hello.

[00:05:57]Put your Thank you for I like the little dancing. Um and yes, I do. I have I found out I mean I know I had autism ADHD but I've I guess I'm what they would call hyper what do they call hyperverbal autistic I guess is what it's called. Um I talk a lot and those of us who were girls that were not deemed autistic from the get-go were always just labeled ADHD, right?

[00:06:30]And I was not born in the 90s, but it was just the fact that I was a kid in the 90s. So that's one of the things I found out recently though. I knew that I had autism. We knew that already. But now we've kind of figured kind of that spectrum of reality for me of where I kind of belong on that. And that works.

[00:06:49]And if you have any questions, go ahead.

[00:06:51]I'll show you my tubes, too, if you want to know my what it looks like to have a G tube, J tube, and what it kind of looks like to have a gastric stimulator.

[00:06:57]I'm one of 15,000 people in the world to have one when it comes to the gastric stimulator by Antara. Hi, my name is Michelle. I would like to ask you a few questions about the gastric stimul. Go ahead.

[00:07:08]I am here for it, dear. Go for it. I'm serious. I can tell you a lot about it.

[00:07:14]Tell me what you would like. Sha Shayon, is that how I say it? It's a pretty name.

[00:07:21]because the gas extent I can kind of show you where mine is. So, well, I can show you actually. So, I'm going to stand up carefully because I'm a cane here. All right. And this is my fall button. Okay. So, my gastric stimulator is technically you see that how my skin kind of goes around it. It's right here.

[00:07:39]And right up top is my G tube. Now, this is my J tube for feeding. So, I get fed with formula through here. And this is my G tube for stomach contents preventing and letting out excess gas.

[00:07:52]And this here is where the gastric stimulator is placed. Well, mine was um I'm a MD Anderson cancer patient. Okay.

[00:08:03]Well, let me let you know about the gastric stimulator and sorry to hear you that you're going through cancer. Cancer is a [ __ ] Um I will say it just like that. [ __ ] cancer. My best friend had well she's in remission for now. She had stage 4B ovarian cancer. Um, metastasized to her stomach a bit and to her spleen. She had a huge Yeah. And they had to take her spleen out. Full hysterctomy and she's still she she cancer free for now. She still has some cancer markers, but she'll be off the chemo pill this year. Blah blah blah. But anyway, gastric stimulator. So, how is it going to help you and from what I can tell you? Okay.

[00:08:41]So what they do is they make an incision and what it is is it looks about like this. It looks kind of like a um like the pacemaker for your heart. That's what it kind of looks like and it has two leads and those two leads will go to your stomach right straight to your stomach and because your vagus nerve is damaged and the pylori and everything else that is in your stomach doesn't work and it doesn't absorb it doesn't you know when you have nausea and vomiting and it's making you nauseous all the time. You know, me it's gastric gastropreesis. That's what caused all mine. We don't know if a stroke caused mine, but anyway, I had a lot of stuff that could have caused it. Um, but what it's going to do is you're going to feel the healing thing. I'm going to tell you right now, it's not going to be so bad if it's just the gastric stimulator.

[00:09:30]Okay? If you get two the gastric stimulator plus you get a tube put in at the same time, that is a I guess it was a very life-threatening procedure that I had to have to save my life. Um because I'm I'm already I'm still 80 lbs, but I wasn't after I got it. Like I did gain some weight because I was able to feel a little better. I wasn't throwing up all the time. But I'm going to tell you right now, the healing could be different for everyone. Okay? Feeling full always. Okay. Well, it's going to help you with this. And the reason I'm going to sell you that it's going to help you with that, um, if your stomach is not working, you need one, talk to your doctor. Talk to your gastroenterenterologist. I don't know if you're with Mayo at all. Um, talk to them. M&GI is a very great place to talk to in Minnesota. You can call them.

[00:10:20]Cleveland Clinic. Calling them and talking to them, especially about the gastric stimulator because there are many experts out there. Um, I live in Wisconsin, so Madison, Wisconsin is a good one area to talk about it. Now, when it comes to I have zero people watching. There we go. It's like all of a sudden zero people. It was like gone.

[00:10:44]I don't know if they're coming back.

[00:10:45]But, um, with the gastric stimulator for you, it really was night and day for me.

[00:10:50]Okay, I'm going to tell you it was night and day for me on the nausea and vomiting. So, if that is your number one problem with it, it's night going to be night and day.

[00:10:57]at first. Um, they can turn it up. The gas stimulator can be turned up. Um, mine's at 10 volts. I think the highest it goes is like 10.5 or I can't remember, but I'm almost to the highest.

[00:11:11]And they can up and down the cycling as well. They can up and down the voltage and they can up and down the cycling of the gastric stimulator. It's made by Antara, the one I've got. And they also give you a card that gives you a list of numbers for each lead so that when you go to a hospital, they can know. Plus, you cannot have an MRI when you have this entic stimulator because one, it will pull it right out of you. And I don't think you want that. And two, I'm I'm I'm not going to sugarcoat. I want to be the advocate that's going to tell you the truth. Okay? I don't like when people sugarcoat things.

[00:11:46]I've been going through this for 5 years. I I don't like gaslighting. You know what I'm saying? So, I'm going to tell you like it is and I'm going to try to be nice and and and not scare you, but I want you to understand that it's still an evasive procedure to have a gastric stimulator.

[00:12:04]Um, when I had my J tube and gastric stimulator put in, that was the hardest recovery I've ever had in my entire life.

[00:12:17]I had a child.

[00:12:20]This was worse than child birth.

[00:12:23]Um, my daughter's going to be 17. So, and I'm going to tell you this, it really was. It for me was I was so small. I don't know how small you are. I don't know how tall you are. I'm 5' 3 and I'm 80 lb. Oh, or 79, whichever one I am right now.

[00:12:40]Thank you for the likes. I saw it. Um, they have me on a trial drug. Okay.

[00:12:45]Which one? Oh, propam. Yes. motity. I'm on that as well. Um I can show you. Oh, I can't bring up my thing. But um my motity. So I don't know if you're on the uh one or two milligram. I'm on the two if I remember right. Or five. I don't remember. Hold on. This is what my motity looks like. It's pink [ __ ] Hold on.

[00:13:11]I take a lot of pills. You see this?

[00:13:14]Okay. Okay, so this is what my maturity looks like.

[00:13:19]It's pink and it says two. So I think I'm on a 2 milligram.

[00:13:26]This is my multivitamin pop. But yeah, this is my morning, afternoon, evening, night time.

[00:13:45]And one of these is always nice to have.

[00:13:48]My other two are right here. But one of these is really nice to have.

[00:13:54]I take a lot too. And it's 1 milligram.

[00:13:56]Yep. Yeah. See, I take one. This is my actual medication list. And I want to tell you the gastric stimulator. If you really want to know more about it, you can go on to antara uh.com or Ant look up the Entagastric stimulator. It's E N T E R R A gastric stimulator. That's the one I have. And only 15,000 plus people in the world even have a gastric stimulator. Um, so this is a big big decision for someone to to make. I got a headache. Sorry. But it is a very big decision for someone to make. And it was kind of like it was a big decision for me to have a DNR. It was a big decision for me to have any of that. Um, I keep getting a headache. Hold on one minute.

[00:14:39]But it's true like having the DNR and all I'm going to be on pal of care soon, you know, all those things.

[00:14:47]I mean, I'm making these right decisions and my mom talked with me and she's like, you know, I'm on your side and right now it's about quality of life for you. And I'm like, yes, I know. I'm like, I've kind of realized this and I'm not it's not like I'm going to pass in like 5 years. I'm not going to say that. Like my mom says, like it's not like we're going to think that you're gone and be gone in like 5 years or anything like that. We're going to sit here and think, you know, well, we need just to have you have quality of life so you can be happy, you know, so you can, you know, have what you can have, you know? I mean, I we don't know my future with all of this. There's no cure for what I have.

[00:15:24]Did you get an eye transplant? No, I did not. Why would you ask that?

[00:15:31]I wish I could. Sometimes my eyes, I just tell you what, I wish I could get an eye. Not really. I love my eyes. I actually have really pretty eyes. I'm just very tiny.

[00:15:44]Cuz I have to Oh, I'm sorry. Um I didn't know you.

[00:15:51]Oh, I'm sorry. I didn't know if you were being like People have been mean in my my lives, so I am so sorry. Um, well, I'm so sorry to hear that you're half blind, but I hope that you're you can get what you need um in the transplant. And I hope that you can see the way you want to see and the way you can see. Um, I will pray for you. I will send my love and light towards you um in my own energies and how I pray. Um, and like I said, I don't judge anyone for what they believe. So, like I said, I pray my own way. I'm I am pagan.

[00:16:28]Please don't judge. I just don't sit there and flaunt it all the time. I don't sit there go, "Oh, I'm a witch."

[00:16:33]You know, I don't say stuff like that. I I on my Facebook it it's apparent, but I don't I only advocate for basically this. I mean, yes, I post some stuff.

[00:16:45]Um, I'm going on a tangent because I have ADHD and autism. But I just need to explain that because you'll notice if you go on my Facebook, it's going to be totally different than here. Even though I advocate, especially for mental health, I advocate as well. And even when I'm going through it myself, I try to help others because it helps me in turn.

[00:17:06]They told me that if I max out on the meds that then there are to butt in.

[00:17:11]Okay. Then they are to butt in. Okay, I get you. All right. Well, if if that don't work, well then hey, um you know, I wish you all the best. I seriously do. And I'm going to have a smoky poo on the camera.

[00:17:30]Please don't yell at me, okay?

[00:17:34]Quality of life, right?

[00:17:41]like I said. Um, but no, I I actually quit for four years and then I started up again a little bit. Like I only take a couple whatevers. Not trying to make it any better than it is cuz it's not.

[00:17:53]But I could be doing so much worse.

[00:18:00]Truth. No problem. I hope your headache goes away. Yeah, this is probably actually going to help it. Believe it or not, don't don't ever Nicotine does have its medicinal properties.

[00:18:11]It does help with a headache for some darn reason. It will. That is true. That has been a proven fact that tobacco or caffeine can actually help a headache in certain ways. Why do you think they made aspirin?

[00:18:27]You know, sometimes I remember things I didn't remember. When I said about the aspirin, I was like, [ __ ] I kind of forgot about that.

[00:18:34]Kind of forgot about aspirin and how it's made. Cuz basically aspirin definitely it's basically caffeine. It's basically like a caffeine pill in a way. Although I can't take it cuz it'll hurt me. I'm kind of allergic to it.

[00:18:55]Tylenol too makes me itch my skin off.

[00:18:58]That's what Tylenol does.

[00:19:01]We don't do Tylenol in this house for me. My husband does. I don't.

[00:19:07]Um, okay. So, other updates cuz I got on a tangent and I'm so sorry because I keep losing people and I'm so sorry that I can't stay on track. If I had a script, it would be great. But maybe I could just show off my wheelchair a little more if you guys would like.

[00:19:23]You know, this woman is can't sleep cuz she's in hiding and she wants to update you guys.

[00:19:29]And yeah, well, I'm going to go to bed. I will see you tomorrow. Okay. I will see.

[00:19:36]Okay. I don't know if I'm going to be on tomorrow. Oh, because I have an appointment in the morning or in the afternoon, but we'll I'll try to be on tomorrow, but I'm gonna stay on for a little while cuz I've only been on for 20 minutes. And let's see who comes in, you know, who pops in and says what's up. Um, I am going to do a smoke and have a great night, by the way. Love and light to you. I'm hoping that I helped you with your question and wish you the best in your cancer journey and I hope that it goes away and if it's not able to go away, I wish you peace in every which way.

[00:20:15]Okay. But yes, I do. I wish you the best. Get some sleep.

[00:20:21]My eyeballs I'm rubbing them just because my eyes are dry.

[00:20:28]My eyeballs are dry.

[00:20:31]My eyes are dry.

[00:20:35]Hi.

[00:20:37]It's removed every six months. Oh, okay.

[00:20:42]What's removed?

[00:20:45]Now I'm Now you've got me perturbed. I have to ask the questions now. I'm so sorry.

[00:20:53]I don't mean to cry.

[00:20:57]Oh, it's an autoimmune. All right. So, do you have a blood type? Is it a blood cancer? Autoimmune.

[00:21:05]Leukemia.

[00:21:08]I'm confused.

[00:21:11]Autoimmune.

[00:21:13]I don't know a lot about can stomach.

[00:21:15]Oh, okay. Oh, okay. So, that's what caused your gastroparesis. Okay. Cuz yes, stomach cancer can cause it. They have checked me for that. Um, I'm sure they're going to keep checking for that eventually in my event maybe. There's nothing they can really do for me though.

[00:21:32]And like I said, I'm on liquid uh potassium and through the G tube that goes into my stomach.

[00:21:43]This is where it goes.

[00:21:45]Right in here.

[00:21:47]And then my feeding tube is right here.

[00:21:50]My feeding pump is in there. I'm just not hooked up right now so that I can do this. My husband, he put it up on the pole inside our bedroom for now. It's called NES. Must be a Is it a rare form?

[00:22:02]Must be a rare form of cancer, I'm assuming.

[00:22:06]They have been they have been checking me for cancers and other different levels. But so far, we're just ruling it out now because they just can't find anything, which is good.

[00:22:16]So, yeah. Okay. I kind of figured it was rare. I'm so sorry to hear that. I mean, hey, we can't control when we get something, right? But we can try to control how we cope.

[00:22:30]I'm learning along with people that do have cancer. Now, believe it or not, I don't 2% of the population get it. Yeah.

[00:22:38]Hi.

[00:22:40]Uh, that's Yeah. And that's the thing is I have a rare disease myself. I have a couple. And uh the thing is is it's like I mean gastropesis is technically rare the kind I have. So um I mean true gastroparesis is rare like if you get di if you have diabetes type one that can also cause gastroparesis.

[00:23:06]Um there's other things that can cause gastroparesis but the main one is diabetes. It can be cancer. It can be stroke. It can be um endometriosis. It can be polycystic ovary syndrome. It can be so many different things. And I had a I had a pulmonary ambolism. I've had a stroke. I have had I had endometriosis and polycystic ovary syndrome. Had a hyerectomy when I was 25.

[00:23:32]Um you can still have endometri endometriosis and you still technically have polycystic ovary syndrome once everything has been removed. Believe it or not, it doesn't really go away. Um and endometriosis is should be treated like a cancer. They've actually talked about that in scientific journals and people have talked about the actual doctors um actual experts have talked about thank you for the likes actual experts have talked about um endometriosis should be treated like cancer and that also gastroparesis and stomach cancer or cancer in general are the two most worst diagnosises that gastroenterenterologists say that they give. They never want to give those two diagnosises. cancer or gastropesis because it's not curable.

[00:24:23]I have IBS, chronic constipation, so the top. Oh, hey, I want to go. Oh, but um I hear you on the where depends.

[00:24:36]So, I mean, I'm openly about I'm open about my stuff and I want to show you guys.

[00:24:45]Hi, welcome in. Please don't forget to like and subscribe and share. I'm having a wonderful talk with um if I'm gonna I hope I say it right. I don't want to butcher it. Shalin. Shalen. Shal Shellen. I'm trying. Shayen trying.

[00:25:01]Yeah, mine. Um I'm very I have to say I'm on Miralex. I'm on stool softeners.

[00:25:06]I'm on everything under the sun.

[00:25:08]Michelle. Okay, thank you. But here I'll show you.

[00:25:12]See?

[00:25:15]My mom got me this for my wheelchair. I got my inhaler in here cuz I have COPD as well as asthma. My other inhaler is in the bathroom ad. But yes, my wheelchair right now. It's kind of dirty. It's got my dog's hair on it. Um but it's actually got he's got it's purple and teal.

[00:25:36]The back is all purple, actually.

[00:25:39]Oh, ouch. I'll stand up so you guys can see it. I got to be very careful. We're a fall button, everybody.

[00:25:45]So, I'm going to let you guys see the back of it because it is so cool. Ouch.

[00:25:50]Okay, there we go. All right, hold on.

[00:25:53]That way you guys can see the back.

[00:25:58]All right, so there's the back. It's purple.

[00:26:05]So, okay, let's get back to where I was sitting.

[00:26:12]Try to do this carefully.

[00:26:18]Okay. It's like Christina, don't fall. I will see you tomorrow, Michelle. All right.

[00:26:25]I'm just trying to maneuver my way so that I don't fall my butt over.

[00:26:33]All right. Yep. Sweet leaf. Okay.

[00:26:37]All right.

[00:26:42]Okay.

[00:26:47]All right. My butt hurts. Ouch. Hold on.

[00:26:51]I have to fix Oh my gosh. I have like no cushion. I have only bone right there.

[00:26:57]So every time I sit Let me put back.

[00:27:05]Oh my gosh. Put that back up there.

[00:27:10]Ouch. Ouch. Ouch. Ouch. Ouch. Ouch.

[00:27:14]I feel like I need baby powder.

[00:27:22]H. Okay. Like I said, I'm open about my chronic illness. So, if anyone has questions, just just ask. It's okay.

[00:27:29]It's okay to be this transparent in your illness. I'm just going to say it's okay to be transparent. Like I said, this is not made for under 18.

[00:27:40]This is made for the 18 up.

[00:27:43]So, holy shitis. All right, let's get some salelonite out.

[00:27:51]My salonite wand. We're just going to keep it right here.

[00:27:56]All right. Hy. Hey, welcome in.

[00:28:01]Can't sleep, but I've been doing an update. Um, also, I think I said this already, but just in case just coming in, I'm going to be going on paliative care again. Um, I'm going to probably end up, we don't know, but possibly with hospice/Paliotative because with certain things I can do more, even though you can get off hospice to go back into just regular paliotative like and I'm probably going to be going on TPN. That was one I have not talked about yet. I'm probably going to be going on TPN or PPN, which TPN is total parental nutrition.

[00:28:36]And that is something um that's probably gonna be my best bet now.

[00:28:44]So, thought I'd let you guys all know.

[00:28:48]Um I'm seeing my nutritionist dietitian next week.

[00:28:52]So, this ought to be good. Um but yeah, uh that's that's one of those things. Um it's kind of hard to talk about. I mean, if you think about it, um, I don't know.

[00:29:11]I mean, being 37, almost 38.

[00:29:16]Dealing with a chronic illness that you can't control, of course, but knowing you're never going to be cured, knowing that your life is technically going to get harder no matter what.

[00:29:35]And I've done so much in my mind to try to just accept in some way, shape, or form that my life is not going to go as planned anymore.

[00:29:49]I guess that's kind of how I've been trying to deal with it.

[00:29:53]Tell me if I'm wrong. Like, this is medicine, by the way, guys. Don't even I'm I do this medically though.

[00:30:04]I am a medicinal only. Medicinal, but I'll show you the medicinal. Some good stuff.

[00:30:14]So, this is actually jelly. It's called jelly. Um the name of the brand. And it's actually uh what is it? Cherry gelato.

[00:30:24]This is a card cap.

[00:30:27]All right. I'm just checking to see if the citrine bead that I have inside it if it's stuck in the banger or not.

[00:30:42]The old trusty panda always does it.

[00:30:46]Okay.

[00:30:49]All right, guys and gals or whoever's watching. Hi.

[00:30:55]It's time for the 1:30 in the morning. Dab daboom.

[00:31:11]Got to heat it up.

[00:31:20]Now I'm going to cough a lot. They may not look pretty.

[00:31:24]But that's just how it goes.

[00:31:29]All right. One, two, three. Cheers. E.

[00:31:33]Cheers.

[00:32:23]Good.

[00:32:25]I'm good.

[00:32:57]could go.

[00:33:02]Okay, hold on. I got to fix my It hurts.

[00:33:07]When you when you have a tailbone that has like no fat on it, it sucks. It hurts.

[00:33:22]Mia, my butt is hurting again.

[00:33:40]I got to stand up. It hurts. When you have a feeding tube and you cough, it hurts. But it's the only medicine that actually helps with other stuff.

[00:33:50]Right here is where it hurts.

[00:33:53]There we go. Every time I cough, it hurts. Just going to stand like this for a minute. I love you all. Thank you for watching. I'm not leaving. I'm just saying thank you cuz this [ __ ] hurts.

[00:34:10]This ain't going to let out light.

[00:34:13]Okay, sit down.

[00:34:21]I don't normally show my pain like this.

[00:34:23]So you guys, you were lucky. The only person watching.

[00:34:29]I'm just thankful for people who do and anyone who asks questions.

[00:34:35]I'm just thankful for the people who do subscribe. You know, I understand that I'm not like everyone else. I am not that good at making a live. I am not I'm not that good at it.

[00:34:50]But I'm trying.

[00:34:53]I'm trying.

[00:34:55]I am who I am.

[00:34:59]Learning certain things I'm I can do.

[00:35:02]It's I guess apparently when I'm on a live and I love you guys. You guys are awesome. If you guys are subscribers, please subscribe, please like, please share.

[00:35:12]I'd appreciate it because now I'm realizing those who do come in and they stay, that's what matters um more than anything. It doesn't as I mean it grows. You the pe the amount of people grow that are watching you eventually as you make a live. And I just don't think I'm that great at it because I have been trying.

[00:35:36]I I haven't and I'm not that great at it. And I think it's because I let everybody's comments get to me just a little bit sometimes.

[00:35:45]Not today. Not in this one. This one was okay. This one's been great so far.

[00:35:51]But I think I just in the past I've let too many negative comments get to me.

[00:35:56]And maybe I just need to remember that they've never been in my shoes.

[00:36:03]some of them, you know, or, you know, they don't know what it's like to have a feeding tube, a gastric stimulator and a G tube and being 80 pounds at 5 foot three and they can't and not knowing what it's like to not be able to eat food and and when food just smells rotten and they don't understand that that you want to eat the food but you can't and your stomach won't allow you to because it's par paralyzed because of a nerve that's damaged and you don't exactly know why and neither do the doctors and you feel like a human guinea pig and then you decide well I'm you're going to be an advocate because not very many people know about a lot of it especially the doctors and I literally saved my own life in a way because I got help from others so they saved my life too. I was on a Facebook group and they said, "Hey, call these different hospitals. They may be able to help you." And you know what I did? And you know what they did? They saved my life. I was 78 lbs. So malnourished.

[00:37:17]And the weird thing is is I gained weight. I went up to like 90 something.

[00:37:20]Right now I'm back down to 80, 79.

[00:37:28]So, it's like failure to thrive mode has kicked in. And that's what it feels like. It feels like failure to thrive has kicked in because now my body went back down to almost to where I was, which was 78 lbs a year ago. Well, a year and well, January 4th of last year is when I got my G or J tube and gastric stimulator, right?

[00:37:52]And I was 78 lbs.

[00:37:54]I went up to 90 lbs, 90 something pounds, right? Like I said, and now I'm back down to 80 and I got my G tube in January of this year, almost a year to the day of getting my J tube and gastric stimulator.

[00:38:13]And so I feel like I have done every single thing in my body, in my being, every single thing. And I will continue to do so.

[00:38:30]Trust me.

[00:38:32]For anyone who thinks that I might not, who thinks that I'm just going to give up, never going to give up. That's not in my my natures. I don't give up peasy.

[00:38:43]even when I should sometimes on things.

[00:38:48]But maybe it's just that innate drive to keep alive. I've even when I don't even want to be on this earth sometimes feeling, I don't it's not a you don't actually want to be gone feeling. It's a you just feel done feeling. Even when I have those feelings, I still love being alive. I still love life. I still love so much about life. Even if I can't eat, even if I watch the people I love eating foods that I wish I could eat or watching other people eat because I wish I could eat.

[00:39:26]I don't cry over it anymore that I used to I used to get jealous. I used to get angry when I'd see people eat because I couldn't do it. I wanted to so badly because but my stomach because it don't work.

[00:39:44]Um I mean I had over 48% left in my stomach during my 4hour well and two day type of scan for my gastric emptying scan at Mayo in Rochester, Minnesota cuz they make you they can't had me come in on Friday all day.

[00:40:03]They do like four scans of your stomach in a 5 hour period. Then I had to come back on a Saturday morning, have a scan and Sunday morning. Did not know that they have radiology open on a Sunday.

[00:40:14]That was weird. And we had to drive four hours. Sorry, four hours each time.

[00:40:25]That was painful.

[00:40:28]And I just remember now I'm just knowing that my I don't want to know how slow it is now. The average person is 90% if not all the way empty after 4 hours. I had over 48% of the food left in my stomach that I had to eat before the scans. And that's a lot. So, and that puts you in the severe gastropreces stage, which is technically considered sort of in stage. Um, and then it it gets progressively worse.

[00:41:01]It does. You can't stop it. It I'm sorry if anyone ever tells you that gastroparesis is curable.

[00:41:15]You should probably tell them to ask a gastroenterologist.

[00:41:21]You should probably tell them to ask a actual specialist. Or maybe you should just tell them it's actually not curable, my dear. Um, now if you get opioidist, I'm gonna say it like that because this is for 18 and up. I'm pretty sure I can say that. If you get that version, uh, that can be, I guess. I mean, as soon as you stop using, then it goes away. Um, I that's I didn't start trying any CBD product of any sort until after this started, just so you guys know. And I was I tried gummies first. Bad idea. Apparently with gastroparesis, do not do gummies.

[00:42:02]Stomach cannot process it or break it down. That's why I thought I could I was I wanted um what was it that we got? Oh, gushers. I got gushers off a freaking Tik Tok, right?

[00:42:17]Couldn't do that. My stomach went and I was so backed up. I had a kidneysized amount of stuck in me. I had to go. It was in so much pain. So much pain. They had to give me ketamine. The ambulance EMTs had to give me that because my body wouldn't stop. I had so much impacted.

[00:42:40]And I tell you, I that was the worst. I mean I've been I was I've been in so much pain because of this stuff that it's just not that's why I mean also pain management is you know we are trying to get me on actual strong pain meds by the way um because I am into the point where the pain creates a lot of anger it creates a lot of frustration it creates a mindset that I'm not used too. But the chronic illnesses that I've got, it it's created so much pain. My mind just goes and I get angry. I get sad. I I just go like it's just And it's so strange how it's not your fault. It's because one I'm chemically imbalanced in there because of being malnourished. I am.

[00:43:36]Yeah.

[00:43:41]But the thing is, there's not anything I can do about it.

[00:43:51]I wish there was.

[00:43:55]And I'm sorry that I I wish I had more answers about gastroparesis on that, but there the only thing I can tell you is that most people with gastropreesis just need to be there for each other. And if you have severe osteoporosis like I do or Aaylor Stanlo syndrome like I do or asthma, COPD, right?

[00:44:25]and all the things I got. I I mean, seriously, if you've got all these things, my heart goes out to you. If you got cancer, I I'm just saying anyone that's going through an illness that cannot be cured, I am hugging you right now and I'm sorry you're going through it because you know what? But we're we're going through it together, right?

[00:44:46]That's how I look at it. We have to survive as best as we can. We have to never give up. And that is one of the things that I have vowed not to do. Even though I'm going to be going on paliative care, it doesn't mean I'm giving up. That's not even hospice isn't really giving up.

[00:45:03]It's just when your body's actually giving up. You can't, you know, if your body is just like you can choose. You know, I could be I qualify for hospice and I ain't doing it. I'm I'm doing paliative. There's a there's a clear difference. Close but different. And you can transition from paliotative to hospice. Now paliative and yes I do have a DNR um and I have paperwork. I have to carry my purse. I'm going to be 38 this year.

[00:45:35]So, but paliative care is supposed to help with the pain, help with, you know, managing all those things and hopefully they will do strong pain meds as I'll put it very, you know, cuz I need it getting to the point like we I can't do the intratheal monitor or not monitor intratheal pain pump sorry because it's like a hockey puck shaped or whatever and I guess it's big and because of my Aaylor Stanlo syndrome, my skin's stretchy.

[00:46:04]So what it would do is it could flip and I'm so skinny that it just kind of Yeah.

[00:46:10]And if I bump it because it's connected to your, you know, spine, you know. Um, and I they'd already told me I don't qualify because of that. My Aaylor Stanlo syndrome basically makes it kaput.

[00:46:28]So, I'm just like, "Okay, or Oh, it broke some more. We're going to put you over there." My selonite wand.

[00:46:39]Damn it.

[00:46:42]This is just awesome.

[00:46:48]Really don't want to get splinters of selonite in me. Just saying. I don't think that would be very good.

[00:46:59]miss I will see this. Hi soning.

[00:47:07]I'm confused.

[00:47:11]I accidentally uh accidentally kind of hurt my selonite wand and it broke a little.

[00:47:19]So it Anyway, hi. How are you? I'm Christina Lundelle or Christina Newman.

[00:47:26]Um, married DNR bracelet, wheelchair, feeding tube backpack. Even though my feeding tube and stuff is in there. Um, I got my feeding tube here. GTube.

[00:47:43]My GTube bag in here for stomach content. That's me. Hi.

[00:47:52]And I'm going on pretty Hey, thanks.

[00:47:54]here. No.

[00:47:58]Um, but thanks. And I'm married. Um, I have gastroparesis, severe osteoporosis, severe gastroparesis.

[00:48:07]Um, yeah.

[00:48:12]And I advocate about it as well as I share um about my diseases and what I do to cope.

[00:48:24]Um, as well as some of the the herbal remedies that I use like marijuana.

[00:48:34]This ain't it, but Oh, please. That's a Did you hear that?

[00:48:48]I was hoping they were coming closer.

[00:48:53]But yeah, anyway, always be kind in the chat, please. Um, and don't say certain things in the chat that are sexual in nature by any means. That is not what this is for.

[00:49:09]This is a very This is a mature chat.

[00:49:12]This is not a immature chat. Thank you.

[00:49:19]That's why I say Tina. And this is about chronic illness. This is about me being on pale care. This is about me going to be going on TPN.

[00:49:29]Pretty sure um my potassium has been very low. So I've been having I'm having to put this into my G tube into my stomach.

[00:49:37]Um so yeah, this is what my life is now.

[00:49:42]And yeah.

[00:49:51]Hi, how are you? Welcome in. Please don't forget to like, subscribe, share.

[00:49:58]I've been live for 50 minutes on the dot. Um, in two, it'll be 2 a.m. in about 2 hours or 2 hours. 10 minutes.

[00:50:08]Sorry. 10 minutes.

[00:50:10]Apparently, I can't read a clock.

[00:50:18]But yeah, I'm I don't know. I might end this live in a little bit here just because I don't know how many people are going to show up now cuz I had a few in the beginning which was kind of really cool. Um not a lot of people, you know, commented. I had one wonderful person comment um earlier, Michelle, so that was nice. Um but yeah, otherwise I talk about chronic illness, chronic pain, um what I deal with. Um if anybody has questions about gastroparesis, um and the updates that I've got.

[00:50:56]Yeah. But I shared my updates. I think I'm probably going to take my pills here. Wait.

[00:51:13]a whole bunch.

[00:51:28]Hate that.

[00:51:31]You know, it's a reflex now. Every time I take pills, I always stick my tongue out. Why is that?

[00:51:41]Never thought of that.

[00:51:45]Is it because of when I was a kid? I was They're always like, "Okay, let me see."

[00:51:48]Uh like, "Okay, open up and go." Ah, I have ADHD and autism. So, there you go.

[00:52:05]touch of the tism.

[00:52:08]Um, might as well tell the truth.

[00:52:12]Um, I also Yeah. Let me show you my wonderful wheelchair.

[00:52:22]This is me wheelchair.

[00:52:25]It's also purple.

[00:52:28]Oh, what's it got on it?

[00:52:31]Oh, it's got my formula by accident on it. Hold on.

[00:52:36]So dirty.

[00:52:40]I don't like it. Me nuts.

[00:52:48]It's my formula from from my feeding tube. It must have spilled on there.

[00:52:54]But yeah, it's my new wheelchair.

[00:52:59]That's my feeding tube bag. And my uh this is my There we go. Now you can see it better. Thank you for saying good luck. But yeah, this is my my lovely new wheelchair.

[00:53:12]And that's my my G2 bag. My mom just got me this to put on my wheelchair.

[00:53:21]And it actually has on the back it's got pockets.

[00:53:27]So, yep.

[00:53:30]There she be.

[00:53:32]She my baby. I may not be able to drive, but this is mine. And she did my brakes.

[00:53:40]And these come out like this. If you don't really want them like that, you can actually just kind of hide this somewhere. You really want to kind of like put it up here.

[00:53:49]Or you can have it sitting like that.

[00:53:51]Just have it like that if you really don't want it up. But there you go.

[00:54:05]Sorry, I almost dropped, guys.

[00:54:10]I think I'm going to go to bed, guys.

[00:54:13]I'm thankful for you guys being here.

[00:54:16]Please don't forget to like, subscribe, share if you'd like.

[00:54:22]Um, I'm trying to figure out how to do lives cuz I'm not very good at it, but I'm trying. So, thank you for being here. Um, yeah, love and light. Blessed be and sweet dreams everyone from me and my husband.

[00:54:43]Bye.