You are an amazing young woman. A true inspiration to anyone with life changing illnesses, diseases, etc. Anything is possible with determination. I wish you the best in all you do.
I suffer from severe mental illness, and your videos are helping me! The EDS and chronically ill community on TH-cam is so warm, welcoming and positive, and I get sweeped in your warmth and feel a bit better. I recognize myself so much, being invisibly disabled, having spoons to portion out your energy, bad and good nurses/doctors, hospitals etc. It's interesting so different things can be so similar! Thank you for putting yourself out here, it helps for more people than you think
Those pajamas do look comfortable! I'm always looking for comfy jammies. Especially for the down days. I'm an adult and recently went in to the grocery store in decent jammies. You do what you have to sometimes. I've been in more than a few drug stores in PJ's after surgeries or getting out of the hospital, haha. Passing out isn't fun, but it's good that you were close to people. I've passed out alone and that is the scariest. Did you feel it coming on? Like your peripheral vision closing a bit, or noise sounding different? Sometimes I get that, but not every time. I've been having the sleep deprivation lately. But I definitely have lots of medical stuff going on. Most of my family don't understand why I can't sleep. My husband said to me when today that when he's hurting, he gets tired. So do I, but it's a whole diff pain going on now. Really sharp pain in my neck and base of my skull and nerve pain everywhere. Like lightning running through my body. It isn't necessarily so much worse than other pains I've had, I think it just keeps my senses on edge or something, but my the outside of my skin is numb, so it's really weird. Done iron transfusions. Made a few friends. They seem to help me feel better. I'm thinking it's time for another. Yes, I always felt bad the day after transfusion, and a lot better the second day. It's weird. Love your hair! I've always been a short hair girl. I've grown it out a few times, but it gets so heavy. So I end up almost shaving it off because it hurts, haha. My hairstylist won't let me shave it off, but we go super short. I'm doing a style thats all about comfort for me now, short almost shaved underneath, almost chin length and growing just on top, long enough to pull back. If I can pull it back, then I don't get the crazy spiky short hair from laying down. Much more comfortable in Florida heat and less weight on my neck. You rock girl! Keep it up! By the way, I've been watching for a few months, even back a little ways, but I've been depressed so haven't said anything. So, Hi I'm Jane. I have EDS. Most likely HEDS, but no geneticists within 12 hours of where I live that will treat adults, only kids. Same with any Rheumy's that know much about EDS and comorbidities. Also dx Endometriosis, Gastroparesis, Spinal Stenosis and something else going on that we don't know what, PPP Psoriasis, etc. Sending spoons!
oh my gosh at the end there is so much more colour on your cheeks and in your lips! i’m so glad the iron infusions are going well despite the initial side effects! :) hope you’re doing well 😊
Hahaha I totally remember having this conversation with you a few weeks ago!!! We need to FaceTime again soon, without the sleep deprivation hallucinations lol!
I love how positive you are. You are such an inspiration to everyone. I found your channel on my recommended I don’t have any medical conditions like you but I think you are such a great role model for everyone
When I get iron infusions I get that licorice taste. Kinda a bonus I think. I always feel crappy after too for a few days, usually get a migraine right after, but the benefits once my levels really pull up far outweigh the couple bad days for sure!
I've missed you, so sorry you've been so sick...I hope the doctors can help you feel better overall, know you are in my Prayers....loving those polka dot jammies❤️
Sorry to hear you cannot do a blood transfusion...I.V Iron takes many months to work....My Hemoglobin dropped to 7.2 (June 2018) and the idiots at the hospital that I was admitted to wanted me to drop to 7.0 first in order to give me a blood transfusion!! Being such a severe anemic caused me to go into complete Respiratory Failure, I could have died😳😳😳I was super pale as you are and the iron infusions took forever to help my numbers come up! Here it is (November 2018) and my hemoglobin is 11.9! But I'm on full time oxygen from all of this until further notice! My Pulmonologist said it could be 2 years before I can wean off of the O2! KEEP FIGHTING GIRL, YOU ARE FOREVER IN MY PRAYERS! You passed out due to being such a severe anemic, and with all of your immediate medical problems I'm hoping they give you Iron to take at home too to help boost yours up faster, your fast heart rate is because you do not have enough blood to carry the necessary O2 to your lungs so your heart is working overtime! Scary stuff...😳😳😳
You are truly inspiring. I’ve just had an echogram done and a genetic testing day scheduled for the 23rd of Jan to be formally diagnosed and which EDS it could be. In one way, I feel a sense of relief that I will have validation that this pain and discomfort and doubt can be put to rest. In another way, I feel like I’m already mourning my ‘old life’ when I could ignore what was happening to my body and mind. I don’t to be told officially I’m sick. I want to be told it’s not all in my head. I feel conflicted, but that’s ok. Thank you for updating and educating.
Oh that part at the end of your infusion looked so hard! But you look amazing at the closing! I can definitely see a huge change in you from the last live insta I saw! So glad Mickey!
My third video watching you and I love you. You are an amazing young woman which I'm sure you've heard several times God bless you may he heal you unless you live a normal life that's what I am praying for and I'm sure everybody that knows you is also praying for the same thing
I have to do the same thing with my left shoulder in the morning. My doctor thinks it might be from muscle weakness and not being able to hold the bone in it's socket. When I start PT here in a little bit for my herniated disc I'll make sure to mention it.
I love how sweet and kind u r and so positive about your conditions and it doesn't seem to bother u and I love that cause then u won't be making vids about boring stuff and saying this hurts all through out the whole vid. 😂💙💙
I recently just found your channel and learned that you live in MN. I too live in MN but was curious if you have heard of a gal named Sara Geurts. She lives in MN and she has been making huge strides with EDS. (she’s a model) I went to high school with her. So I’ve been learning a lot about EDS keeping up with her on Facebook. Small world! Love your channel and positive upbeat self!
If you continue to have a high heart rate, especially when moving from reclining to sitting up or standing, you may look into Postural Orthostatic Tachycardia Syndrome or POTS. I am new to watching your videos and you are very inspiring. POTS and EDS usually go hand in hand along with Mast Cell. So, you may already know this. I wanted to make sure you were aware just in case. Keep being your amazing self! God bless you.
I'm not sure how I found your channel, but I'm glad I did! Before your channel, I had never heard of EDS. So I don't have any physical illnesses, but I do have metal disorders! Yay.... But I love your vids! Hope you feel better! You can fight it!
Hello I’m newish. I have seen some of your other videos though as I struggle with many of the same symptoms/conditions. I’m going to need to get iron infusions too. I also have classical Eds and trouble with my blood. Oh the joys of pots. So sorry you passed out. but I’m glad your Pt caught you! I Hope tomorrow is a better day for you and that your pain level goes down as much as possible. Sending love from a fellow zebra 🦓I
honey don’t worry i’m a hot mess too i broke my ankle two weeks ago and yesterday i passed out and woke up and i ambulance and i broke my neck so yeah i get you :)
For me when I’m sleep deprived is I get SUPER giggly. The one time I’ve hallucinated was when a doctor took me off all medications cold turkey. They hallucination has stuck with me ever since!
After not sleeping for three or four days is when I start going crazy. My anxiety goes bonkers. My pain and stuff goes crazy too. I hear people’s voices and other noises. Idk it’s fricken nuts. I’m at 60 something hours of no sleep right now. Feel better chica
I don't have classical EDS, but my EDS does cause POTS, and the HR pattern you described is my normal day-to-day. Do you not have POTS, or is it just not that severe? I am lucky to have never lost consciousness, but I am also relegated to only exercising in a heated salt water pool, and I keep my legs elevated any time I am stationary. Standing in place just doesn't happen unless I am strapped to a tilt table at an autonomic clinic. I also wanted to ask about sleep. Three days is also my pattern for deterioration....I agree it is sad that EDS people know this. I take quite a bit of medication at night just for sleep, but I am older than you. Will the pediatric doctors you see not prescribe it? I know the side effects can be terrible and some permanent, but I don't know how I'd live without it. I have had serval different "blood product" infusions, but my team of doctors is pretty clueless. Why is a blood transfusion too risky? I had one at my open heart surgery, and various blood products afterwards. I also used to get IVIG infusions back when insurance would cover it. If you have immune disfunction and neuropathy, I highly recommend you check it out with your doctors. I felt so much better on it. The problem is it costs $20k -30k an infusion. They haven't been able to identify my specific gene mutation which leaves me guessing day-to-day what to expect next. I was told only 5% of EDS patients get aortic aneurysm.....I had open heart surgery this year after my FIRST echo showed a large one. I was told only 5% of EDS patients get chiari malformations.....I got mine a couple of years ago. Do you have doctors that seem confident in your treatment and what your future holds? I am sitting here wondering if they are just waiting for me to drop dead from an aortic dissection before 40 so they can analyze my genome and add my mutation to the vEDS diagnostic criteria. Right now they still stand by the hEDS diagnosis and still refuse to treat patients, so I had to assemble my own team of doctors and act as the head. It sounds like you are in good hands though!
The first time I remember making myself go to sleep because I started hallucinating from sleep deprivation was after 3 days of house sitting for my aunt.. I let her dogs outside and watched them for a bit then the ground turned into the ocean.. I cocked my head to the side and went "hmm the ground is an ocean now.. Yeah maybe I should sleep" then watched TH-cam for a while and fell asleep for like 4 hours 😅
I'm new to your channel can I ask a probably very stupid question ? Why do u have to wear face masks? Your such a strong girl amazing how positive u are
I bring my rate down by watching the number and almost like, hold my breathe, but breathe slowly out and it will start to come down. But I starts sweating horribly too and get super hot, so I drink ice water for that. It's so crazy... I just found out I have EDS and yet I have had to have both my knees operated on multiple times and now my back too. I even fell at work years ago and was taken to the hospital and the said nothing was wrong, so my Dr said eat salt. My blood pressure drops real bad too, but will skyrocket too. I have so many weird things. But EDS explains a lot of it
Glad the iron helped (eventually)... I've only "pumped iron" once, but they gave me iv benadryl prior to it, I wonder if that might help you/be an option? I also am realizing that you might be one of the several people I know who are allergic to antihistamines, which is just... Sometimes I feel like there should be a way to appeal these things, ya know? Hahaha... I'm totally kidding, cause I know that's not how it works, but at the same time... Like "really?" lol. (for what it's worth, I'm allergic to cold, and now I've become intolerant to heat, so I'm a bit... Idk what to call myself haha... A zebra?... We are all special in our own special ways... Lol. My friend and I keep having health challenges, she actually has eds type 3 as well, but she's got a really rare autoimmune disorder that keeps nearly killing her, in the most literal sense. She's a fighter, it just is crushing me that she's been in so many hospitals and almost constantly, yet doctors seem to just accept that it's rare and killing her, without having the curiosity/using critical thinking, to help figure out how they can help, with her disorder or with her quality of life, even... And it's like... Just the general things they would do if she didn't have vasculitus PAN, they don't bother doing or investigating because they just... Idk. It doesn't make sense to me. She's fighting, so why is it so hard to get her doctors to put in some minimal effort and just... Try one of the many things they could TRY! she wants to. And yet it just.... It doesn't seem to matter. She accepts the reality of the situation, and she's had her heart and breathing stop enough times that... I know I'm lucky to have her every day that I do. But she's lived over 2 years since the onset of this, and she keeps surviving and, yeah, the odds haven't been in her favor, but that seems like a dumb reason to not at least like... There's options to try. Doctors just seem to not be willing to try. And she's considered hospice for pain management, cause honestly she's... I don't know how she deals. She shouldn't have to suffer in so much pain. But to get hospice, aka pain management... Which shouldn't be the same thing, yet... That seems to be the reality... She would have to not try anything else that might help her live, like chemo etc. I don't have a point, I'm just... She's been to John's Hopkins... If anyone has any suggestions, even for a team of doctors that would at least just care... Or prayers? I would be thankful. Sorry that honestly wasn't why I started typing this, and I... Idk. I just hate feeling like there's something more I could do to help. Yet I'm in a similar boat, but I'm luckily just... Sinking much slower... And hopefully there's answers and I'll be ok and be able to live more life and... I'm fine, just not able to be there for her as I wish I could. Not because of pain, it's cause something is up with my neck that causes neurological issues primarily if I'm... Anything but horizontal. Some of it is POTS, but I've got flow issues, but I think I figured out a doctor who could help figure it out, now I just have to get an appointment lol... But I've got hope so I'll be fine. I just wish I knew of a doctor that will research and just... Fight beside her... I'm not a doctor. There's research, though. There's hope. They just.... Have to care... Thanks for showing how you pop your hip back in... My hips dislocating is new to me and it's not intuitive, to me anyways, how to put it back in, that helped a lot though, thanks!
I have after three days of no sleep. I was with a friend that had West Nile disease in the hospital and I was afraid if I fell asleep he'd die. It's happened to me before so I freaked out. Lol
I’m not sick and I don’t have a feeding tube. I learning about different illnesses and how other people live. I was wondering when your port is accessed how do you take a shower and keep it protected? Also, do you have to do anything special with your feeding tube so you can take a shower? I’m not trying to be rude, I’m just genuinely curious.
I have a question and if you have already talked about this then I'm sorry for the waste... if it is not to personal does EDS effect your menstrual cycle I've been watching your videos for a little bit now and when you explain more I've been more curious about how it would affect it if it's too personal I understand I just didn't know if your condition affected it or not
Hi there my name is carletha. I have problem with my iron I had infusion before it is horrible and I hated it alot but it made me feel much better and I do
Sarulia my body demands a lot of sleep from me and I have psychosis that is made worse by being tired (among other things) so I start hallucinating if I only slept for like 7 hours lol
You are an amazing young woman. A true inspiration to anyone with life changing illnesses, diseases, etc. Anything is possible with determination. I wish you the best in all you do.
IronBlitz she’s an inspiration to me I have gastroparesis and fibromyalgia and gastritis and acid reflux
The iron really seems to have helped. Your colour is so much better!
I suffer from severe mental illness, and your videos are helping me! The EDS and chronically ill community on TH-cam is so warm, welcoming and positive, and I get sweeped in your warmth and feel a bit better. I recognize myself so much, being invisibly disabled, having spoons to portion out your energy, bad and good nurses/doctors, hospitals etc. It's interesting so different things can be so similar! Thank you for putting yourself out here, it helps for more people than you think
Samir the Cat in Jesus name any spirit causing problems go right now, and be healed fully now in Jesus name
+@@meolahresseh5031 I don't believe in exorcism, but I guess you're trying to help me, so thank you!
Samir C. Cat don’t wanna sound rude but what is you diagnosis (mine is bipolar with psychosis).
OH MY GOSH I LOVE YOU AND YOUR VIDEOS SO MUCH
NOT AS MUCH AS I LOVE YOU!
How are you feeling today
Those pajamas do look comfortable! I'm always looking for comfy jammies. Especially for the down days. I'm an adult and recently went in to the grocery store in decent jammies. You do what you have to sometimes. I've been in more than a few drug stores in PJ's after surgeries or getting out of the hospital, haha.
Passing out isn't fun, but it's good that you were close to people. I've passed out alone and that is the scariest. Did you feel it coming on? Like your peripheral vision closing a bit, or noise sounding different? Sometimes I get that, but not every time.
I've been having the sleep deprivation lately. But I definitely have lots of medical stuff going on. Most of my family don't understand why I can't sleep. My husband said to me when today that when he's hurting, he gets tired. So do I, but it's a whole diff pain going on now. Really sharp pain in my neck and base of my skull and nerve pain everywhere. Like lightning running through my body. It isn't necessarily so much worse than other pains I've had, I think it just keeps my senses on edge or something, but my the outside of my skin is numb, so it's really weird.
Done iron transfusions. Made a few friends. They seem to help me feel better. I'm thinking it's time for another. Yes, I always felt bad the day after transfusion, and a lot better the second day. It's weird.
Love your hair! I've always been a short hair girl. I've grown it out a few times, but it gets so heavy. So I end up almost shaving it off because it hurts, haha. My hairstylist won't let me shave it off, but we go super short. I'm doing a style thats all about comfort for me now, short almost shaved underneath, almost chin length and growing just on top, long enough to pull back. If I can pull it back, then I don't get the crazy spiky short hair from laying down. Much more comfortable in Florida heat and less weight on my neck.
You rock girl! Keep it up! By the way, I've been watching for a few months, even back a little ways, but I've been depressed so haven't said anything. So, Hi I'm Jane. I have EDS. Most likely HEDS, but no geneticists within 12 hours of where I live that will treat adults, only kids. Same with any Rheumy's that know much about EDS and comorbidities. Also dx Endometriosis, Gastroparesis, Spinal Stenosis and something else going on that we don't know what, PPP Psoriasis, etc. Sending spoons!
My scottish grandma (born 1904) would have called you a "bonnie lass"...I just want to say you're "fricking beautiful"
oh my gosh at the end there is so much more colour on your cheeks and in your lips! i’m so glad the iron infusions are going well despite the initial side effects! :) hope you’re doing well 😊
Hahaha I totally remember having this conversation with you a few weeks ago!!! We need to FaceTime again soon, without the sleep deprivation hallucinations lol!
I love how positive you are. You are such an inspiration to everyone. I found your channel on my recommended I don’t have any medical conditions like you but I think you are such a great role model for everyone
Oh Mickey! Take care and be well sweetie xxxxxxxx
When I get iron infusions I get that licorice taste. Kinda a bonus I think. I always feel crappy after too for a few days, usually get a migraine right after, but the benefits once my levels really pull up far outweigh the couple bad days for sure!
Ely Kloker in Jesus name be healed
Your blanket is very beautiful and it looks like it's so so warm! Feel better soon Sweetie!!!
So nice to see an update. I am not on instagream so this is the only way I get to see updates. Hopefully the infusions will help. Take care.
I've missed you, so sorry you've been so sick...I hope the doctors can help you feel better overall, know you are in my Prayers....loving those polka dot jammies❤️
Your short hair is my absolute favorite😊💜
Sorry to hear you cannot do a blood transfusion...I.V Iron takes many months to work....My Hemoglobin dropped to 7.2 (June 2018) and the idiots at the hospital that I was admitted to wanted me to drop to 7.0 first in order to give me a blood transfusion!! Being such a severe anemic caused me to go into complete Respiratory Failure, I could have died😳😳😳I was super pale as you are and the iron infusions took forever to help my numbers come up! Here it is (November 2018) and my hemoglobin is 11.9! But I'm on full time oxygen from all of this until further notice! My Pulmonologist said it could be 2 years before I can wean off of the O2! KEEP FIGHTING GIRL, YOU ARE FOREVER IN MY PRAYERS! You passed out due to being such a severe anemic, and with all of your immediate medical problems I'm hoping they give you Iron to take at home too to help boost yours up faster, your fast heart rate is because you do not have enough blood to carry the necessary O2 to your lungs so your heart is working overtime! Scary stuff...😳😳😳
Thank you for sharing your bad day it made Feel better no I am I’m not the only one
Never the only one ❤️ Hang in there girly!
"I'm never doing a Day in the Life again!" 😂
Haha I say that now until I don't have anything else to film 😂
Crazy how fast things can change.... keep being strong!
You are truly inspiring. I’ve just had an echogram done and a genetic testing day scheduled for the 23rd of Jan to be formally diagnosed and which EDS it could be. In one way, I feel a sense of relief that I will have validation that this pain and discomfort and doubt can be put to rest. In another way, I feel like I’m already mourning my ‘old life’ when I could ignore what was happening to my body and mind. I don’t to be told officially I’m sick. I want to be told it’s not all in my head. I feel conflicted, but that’s ok. Thank you for updating and educating.
my iron infusions give me horrible migraines too. I take two extra strength Tylenol before and it helps dull the pain
Oh that part at the end of your infusion looked so hard! But you look amazing at the closing! I can definitely see a huge change in you from the last live insta I saw! So glad Mickey!
You are the most amazing and courageous young Woman. I love watching your videos. You are a true inspiration to everyone. God Bless you sweetie.
YOU ARE SO FLIPPING AMAZING! I LOVE YOUR VIDEOS
I get iron infusions twice a week and every time I go I get a horrible headache. It’s a classic symptom. The other symptoms have subsided pretty much
Tiffany Amber in jesus name be healed
Meolah Resseh Amen, thank you ❤️
Bless you for still having a smile on your face, even with everything you have going on! ❤❤
Edit: Thank you so much Mickey for liking my comment! ❤
Just realised that we’re wearing the same coloured nail polish.. it looks so good on you!!
When I wake up I just casually put my body back together. Love you micky❤️❤️
My third video watching you and I love you. You are an amazing young woman which I'm sure you've heard several times God bless you may he heal you unless you live a normal life that's what I am praying for and I'm sure everybody that knows you is also praying for the same thing
YES another video! Yay, your so beautiful and I hope you feel better.
You are one amazing person "life with stripes".i love listening to you.
Holy moly look how good your color is after the iron ☺ 👍
Funnily enough teal ribbon also covers my medical issues as well , poly cystic ovarian syndrome.
I have to do the same thing with my left shoulder in the morning. My doctor thinks it might be from muscle weakness and not being able to hold the bone in it's socket. When I start PT here in a little bit for my herniated disc I'll make sure to mention it.
I'm glad you feel better and I'm praying for you to get beter
I love how sweet and kind u r and so positive about your conditions and it doesn't seem to bother u and I love that cause then u won't be making vids about boring stuff and saying this hurts all through out the whole vid. 😂💙💙
I recently just found your channel and learned that you live in MN. I too live in MN but was curious if you have heard of a gal named Sara Geurts. She lives in MN and she has been making huge strides with EDS. (she’s a model) I went to high school with her. So I’ve been learning a lot about EDS keeping up with her on Facebook. Small world!
Love your channel and positive upbeat self!
Beets, cherries and other dark red colored fruit are high in iron! I hope they can help you ❤
Katie is so pretty! Also hope things are on the uphill for you, Mickey. Sometimes we have to jump through so many hurdles to get to the other side!
If you continue to have a high heart rate, especially when moving from reclining to sitting up or standing, you may look into Postural Orthostatic Tachycardia Syndrome or POTS. I am new to watching your videos and you are very inspiring. POTS and EDS usually go hand in hand along with Mast Cell. So, you may already know this. I wanted to make sure you were aware just in case. Keep being your amazing self! God bless you.
Crazy day! Thanks for sharing Mickey! You and your sisters are so cute together! 💕
Thanks! Its my favorite part of the video 😊
I'm not sure how I found your channel, but I'm glad I did! Before your channel, I had never heard of EDS. So I don't have any physical illnesses, but I do have metal disorders! Yay.... But I love your vids! Hope you feel better! You can fight it!
Your such an inspiration girl.You inspire me to keep pushing throw in everything I do.You are the best❤️❤️😊😊
So happy you posted. I love your vlogs
Hello I’m newish. I have seen some of your other videos though as I struggle with many of the same symptoms/conditions. I’m going to need to get iron infusions too. I also have classical Eds and trouble with my blood. Oh the joys of pots. So sorry you passed out. but I’m glad your Pt caught you! I
Hope tomorrow is a better day for you and that your pain level goes down as much as possible. Sending love from a fellow zebra 🦓I
honey don’t worry i’m a hot mess too i broke my ankle two weeks ago and yesterday i passed out and woke up and i ambulance and i broke my neck so yeah i get you :)
I love your jammies! Polka dots are my favorite. Also your hair looks A-mazing.
That's literally the exact same way I put my hips back in every morning! #EDSsquad
I saw your comment on Ann Lee Fisher video
I’m so happy I’ve been waiting for this since your live stream!❤️❤️
Sara krueger me too ❤️
Haha! Thanks for joining the Live and hanging out with this hot mess 😂
Your colour looks way better after the infusion. Keep an eye on ferritin and get it again if you need it.
Its good to see u feeling better
For me when I’m sleep deprived is I get SUPER giggly. The one time I’ve hallucinated was when a doctor took me off all medications cold turkey. They hallucination has stuck with me ever since!
You inspire me so much and you are so so so pretty!!!
Oh for hemoglobin problem, take sublingual B12 and take 2 prenatal pills or equivalents per day
After not sleeping for three or four days is when I start going crazy. My anxiety goes bonkers. My pain and stuff goes crazy too. I hear people’s voices and other noises. Idk it’s fricken nuts. I’m at 60 something hours of no sleep right now. Feel better chica
You are so inspiring!
Feel better 💗💜💜💕💕💕
I get that way when I don't sleep . I used to see spiders all over the room . Which is scary
Video was still private. I am early. :)
Drew Bressel no you’re not
Drew Bressel I hate you you’re so annoying
Claudia Villatoro what’s the problem??
I don't have classical EDS, but my EDS does cause POTS, and the HR pattern you described is my normal day-to-day. Do you not have POTS, or is it just not that severe? I am lucky to have never lost consciousness, but I am also relegated to only exercising in a heated salt water pool, and I keep my legs elevated any time I am stationary. Standing in place just doesn't happen unless I am strapped to a tilt table at an autonomic clinic.
I also wanted to ask about sleep. Three days is also my pattern for deterioration....I agree it is sad that EDS people know this. I take quite a bit of medication at night just for sleep, but I am older than you. Will the pediatric doctors you see not prescribe it? I know the side effects can be terrible and some permanent, but I don't know how I'd live without it.
I have had serval different "blood product" infusions, but my team of doctors is pretty clueless. Why is a blood transfusion too risky? I had one at my open heart surgery, and various blood products afterwards. I also used to get IVIG infusions back when insurance would cover it. If you have immune disfunction and neuropathy, I highly recommend you check it out with your doctors. I felt so much better on it. The problem is it costs $20k -30k an infusion.
They haven't been able to identify my specific gene mutation which leaves me guessing day-to-day what to expect next. I was told only 5% of EDS patients get aortic aneurysm.....I had open heart surgery this year after my FIRST echo showed a large one. I was told only 5% of EDS patients get chiari malformations.....I got mine a couple of years ago. Do you have doctors that seem confident in your treatment and what your future holds? I am sitting here wondering if they are just waiting for me to drop dead from an aortic dissection before 40 so they can analyze my genome and add my mutation to the vEDS diagnostic criteria. Right now they still stand by the hEDS diagnosis and still refuse to treat patients, so I had to assemble my own team of doctors and act as the head. It sounds like you are in good hands though!
Sleep deprivation is weird and I know the lighting strike thing. When I close my eye it does it so bad.
Yesssss!!!!!!
The beginning is literally me every morning lol. I have to fix my body to Mickey!!
Madeline Victoria be healed now in Jesus name, every problem in the body leave right now
I was wondering if you were in a wheelchair all the time or just sometimes, im new to your channel so just wondering
When I'm sleep deprived I just get really sick with like a fever and throwing up it's not fun but I think hallucinating is even worse😫😫
Your growing so much!
I want to be as pretty as you. your so kind. my family is PRAYING for you to get better. we love you! LOVE YOUR VID.....have a great life
Well I was told by a neurologist that headache/migraines can be treated with some caffeine
Injectofer is a life saver! Hard to find though!
The first time I remember making myself go to sleep because I started hallucinating from sleep deprivation was after 3 days of house sitting for my aunt.. I let her dogs outside and watched them for a bit then the ground turned into the ocean.. I cocked my head to the side and went "hmm the ground is an ocean now.. Yeah maybe I should sleep" then watched TH-cam for a while and fell asleep for like 4 hours 😅
I'm new to your channel can I ask a probably very stupid question ? Why do u have to wear face masks? Your such a strong girl amazing how positive u are
Love your videos!!!!! ❤️❤️❤️❤️❤️❤️❤️❤️❤️
Your Amazing sorry you have to go through health issues it sucks.
Your so pretty and so so so so amazing . Kepp strong and be happy 😇😊
Living for the short hair
I bring my rate down by watching the number and almost like, hold my breathe, but breathe slowly out and it will start to come down. But I starts sweating horribly too and get super hot, so I drink ice water for that. It's so crazy... I just found out I have EDS and yet I have had to have both my knees operated on multiple times and now my back too. I even fell at work years ago and was taken to the hospital and the said nothing was wrong, so my Dr said eat salt. My blood pressure drops real bad too, but will skyrocket too. I have so many weird things. But EDS explains a lot of it
Glad the iron helped (eventually)... I've only "pumped iron" once, but they gave me iv benadryl prior to it, I wonder if that might help you/be an option? I also am realizing that you might be one of the several people I know who are allergic to antihistamines, which is just... Sometimes I feel like there should be a way to appeal these things, ya know? Hahaha... I'm totally kidding, cause I know that's not how it works, but at the same time... Like "really?" lol. (for what it's worth, I'm allergic to cold, and now I've become intolerant to heat, so I'm a bit... Idk what to call myself haha... A zebra?... We are all special in our own special ways... Lol. My friend and I keep having health challenges, she actually has eds type 3 as well, but she's got a really rare autoimmune disorder that keeps nearly killing her, in the most literal sense. She's a fighter, it just is crushing me that she's been in so many hospitals and almost constantly, yet doctors seem to just accept that it's rare and killing her, without having the curiosity/using critical thinking, to help figure out how they can help, with her disorder or with her quality of life, even... And it's like... Just the general things they would do if she didn't have vasculitus PAN, they don't bother doing or investigating because they just... Idk. It doesn't make sense to me. She's fighting, so why is it so hard to get her doctors to put in some minimal effort and just... Try one of the many things they could TRY! she wants to. And yet it just.... It doesn't seem to matter. She accepts the reality of the situation, and she's had her heart and breathing stop enough times that... I know I'm lucky to have her every day that I do.
But she's lived over 2 years since the onset of this, and she keeps surviving and, yeah, the odds haven't been in her favor, but that seems like a dumb reason to not at least like... There's options to try. Doctors just seem to not be willing to try. And she's considered hospice for pain management, cause honestly she's... I don't know how she deals. She shouldn't have to suffer in so much pain.
But to get hospice, aka pain management... Which shouldn't be the same thing, yet... That seems to be the reality... She would have to not try anything else that might help her live, like chemo etc.
I don't have a point, I'm just... She's been to John's Hopkins... If anyone has any suggestions, even for a team of doctors that would at least just care...
Or prayers?
I would be thankful.
Sorry that honestly wasn't why I started typing this, and I... Idk. I just hate feeling like there's something more I could do to help. Yet I'm in a similar boat, but I'm luckily just... Sinking much slower... And hopefully there's answers and I'll be ok and be able to live more life and... I'm fine, just not able to be there for her as I wish I could. Not because of pain, it's cause something is up with my neck that causes neurological issues primarily if I'm... Anything but horizontal. Some of it is POTS, but I've got flow issues, but I think I figured out a doctor who could help figure it out, now I just have to get an appointment lol... But I've got hope so I'll be fine. I just wish I knew of a doctor that will research and just... Fight beside her... I'm not a doctor. There's research, though. There's hope. They just.... Have to care...
Thanks for showing how you pop your hip back in... My hips dislocating is new to me and it's not intuitive, to me anyways, how to put it back in, that helped a lot though, thanks!
❤️hang in there love
Love ur video can u do a planner video and what in my bag video
I have after three days of no sleep. I was with a friend that had West Nile disease in the hospital and I was afraid if I fell asleep he'd die. It's happened to me before so I freaked out. Lol
I’m not sick and I don’t have a feeding tube. I learning about different illnesses and how other people live. I was wondering when your port is accessed how do you take a shower and keep it protected? Also, do you have to do anything special with your feeding tube so you can take a shower? I’m not trying to be rude, I’m just genuinely curious.
I pass out so often too even with my iron infusions 😔 it's the worst feeling. I always throw up after too
I have a question and if you have already talked about this then I'm sorry for the waste... if it is not to personal does EDS effect your menstrual cycle I've been watching your videos for a little bit now and when you explain more I've been more curious about how it would affect it if it's too personal I understand I just didn't know if your condition affected it or not
You seem so happy and positive. Do you get anxiety or depression at times from everything you have to deal with ?
Omg yay new video ❤️❤️
You look better after the iron injections.
I do weekly iron infusion my hemoglobin was 3.7 when I went to the er last time. The iron has helped.
Oh dear that's low 😑 hope you are feeling better
Hi there my name is carletha. I have problem with my iron I had infusion before it is horrible and I hated it alot but it made me feel much better and I do
Doctor told me mines at a 3....going go get an iron infusion soon. I am scared tho
Cute and comfy always important fun feels good
Just curious with feeding tube. I though bandages now go over and taped down to help with skin integrity verses under
I have the same vera bradley bag as you I also have EDS myself!
If your reading this Mickey, you are such an inspiration to me I hope they can figure out a way to fix the flipping I love ya (:
Girl it takes 3 days for you to hallucinate while sleep deprived? It takes me a few hours after I'm initially tired.
😂
Sarulia lol it takes me about 4 to 5 days to start hallucinating
Sarulia my body demands a lot of sleep from me and I have psychosis that is made worse by being tired (among other things) so I start hallucinating if I only slept for like 7 hours lol
You remind me so much of lily fron how i met your mother 😍
New fan 💖 blessings to you
So why exactly do you use a wheelchair? Is it to prevent dislocations?
Dude your hips 😯😯😯😯
I know! And especially that sound near the beginning! It made me cringe
can you do a video on like body care? because you said that your mom washed your hair for you so i’m curious how you wash your body and such
Much love, ❤️
You are very inspiring I hope you get well beautiful
Omg I get the lightning strikes also😂
I'm just curious but why do you have to wear a mask ? Love your content btw😊