Hi everyone. Sorry i'm late for commenting. I did my presentation about EDS and it went really good. Everyone loved it (even the popular kids). I am very proud of myself.
Mickey, thank you for opening your life for us to learn about EDS. My 16 year old daughter was diagnosed over a year ago. Watching you helps me understand what she is going through.
Thank you for mentioning Chronically Jaquie. I'm glad you are informed on the risks of complications, especially having EDS and being a pediatric pt. You know your stuff. Good job being your own advocate.
Congratulations on graduating!!! I’m a senior this year and I’m starting to do some internships at physical therapy offices and I’m super excited! Plan on becoming a physical therapist 😊
Congrats on graduating!! My son graduates on 6/5. Best of luck on your future endeavors. I’m thankful the worst of my health issues didn’t hit until my mid-20’s. I can’t imagine going through school with my health the way it is now
I’ve had all kinds of tubes...J, GJ, and G tubes. I had two J tubes to be exact and they were both sooooo painful. I love my GJ even with it coiling frequently.
Am I ever so grateful for the fact that I am cleared to access my port on my own. My Drs have walked through the steps for me and are happy about the fact that I know that as I am the one with the port it will be ME being the one to suffer with the infection should I not clean the skin appropriately before accessing so I am extremely neurotic about the cleanliness when accessing my port EVERY SINGLE TIME I access. And needless to say, I access twice a month.
Love your videos Mickey! I’m doing a Physical Therapy intership with my college over summer while also getting my phlebotomy cert and I’m so excited :) I want to work in medicine and to be a PA in the future 😁
you are so cute and so confident I love it! I have something wrong with my eye and I was so nervous to start a channel because I didn’t want judged!! but you make me feel like I can do what I want and not care what people say ! So I finally started a channel !!! 💖💖
Glaf you came to a decisuon you're good with for the feeding tubes. I have been avoiding my gastro dr bc all he wants to do is a J tube for my gp (not even considering other tubes bc 'I'm too severe') and without any kind of feeding tube is pretty hard and not great atm but I know it's not the right choice for me and hoping he'll cool on the idea or I can figure out how to make a better case for something else. (Or my other docs get my other condition under good control as my stomach's way less grim when it is) x
I have probably got mine from both sides. Weird. Nice birthday gift I love your videos. So much I regognising from my youth. Take care and laugh when ever you can, that is a great pain relief 💜👻 I'm soon 48 years old. Living in Sweden. Have EDS classic and a long list of other diagnosis.
Hi Mickey! Can you explain the difference between the different tubes? I know you say getting a J tube will help quality of life, but what do you mean exactly? What are the differences from what you have now? Thanks! Keep up the good work, I love your videos!
YES I LOVE THESE VLOGS!!!! Also I LOVE the as you say "awkward" stage your hair is at. Yes i do because I love the natural color but with the ends being very blonde & I also love your hair at this exact length to maybe just above the shoulder. You look great in bobs..maybe you can try a "lob" (long bob). Just my opinion of course!! You are so beautiful either way & inside so beautiful. XxOo
Well I’ve never had a port (I know when it’s not accessed you can basically take a shower without doing anything), but I had a cvl, and whenever I took a shower or anything (tubes or not), I just covered it with cling wrap the best I could. I ended up taking more baths during that time tbh since it’s easier to keep it out of the water that way
Hi ♡ I'm new to your channel :) I love you and your content! It's super inspiring! I'm struggling with doctors appointments and getting my diagnosis currently :/
Hopefully you are feeling much better now. You are the one that has to make the decision on you feeding tube, please do what you feel is best for you. Not all tubes are right for everyone. Honestly if your tubes are working for you why change. Take care.
I’m glad you mentioned Jaquie’s passing and how it’s not a good idea for most people to get a straight J tube. I don’t think she really needed it in my humble opinion
I know for my son we are asking people to stagger their time when they arrive to his Grad party. We are also doing those close to him and it's ok so breath!
So you got your classical EDS from your mom .... does your dad's side of the family have EDS as well? If so could you have both classical and hypermobile type?
Hey Mickey, I love watching your videos. I am a fellow EDS-er and a Tubie. I’m curious, if you already have a G/J what’s the difference in getting a J-tube? I have a PEG/J, but I’m confused as to why just a J-tube is more risky than the G/J you already have? Not trying to sound rude, just curious as to what the difference is. Keep on keeping on girly! 💕
I love your videos I am learning about eds. Your port is under the skin?? Do they have to cut the skin to access the port?? I am confused on how that works. What is the difference between a J tube and a gj tube?
Crystal Carroll there is a small needle that goes through the skin and into the port under her skin. A j tube goes into your jejunum(a part of your small intestine) and with a gj tube one part goes into your stomach and the other into your jejunum.
How did you know that your stomach stopped working? Or did it ever work? I have EDS, and have always had trouble eating in the mornings, but recently I’ve been throwing up and unable to eat for a couple of days now.
3:39 Is your watch so light that you didn't know you were not wearing it? 4:19 Of course. 4:33 It does make it easier to recognize when you are being sarcastic, which I like. 8:14 I hope you'll feel better soon. 8:25 Sorry, but...LOL
You may want to cut down the footage a little to cut out the spaces where you aren’t speaking even though they only last a few seconds. It would make the video feel more seamless
I love your videos. Can you do a video about managing periods with chronic illnesses? I have chronic illnesses and have had my period for a few years now and all the birth control I take either doesn't work well or causes a reaction with my mast cell. So if you have any that works please share it with me
I react to my periods but have always gotten very sick from bc pills so those are out of the question. Have you considered cloth menstrual pads or other reusable options? I find that personally I am less reactive to my periods when I use these items as opposed to anything disposable. Good luck with everything!
Hi everyone. Sorry i'm late for commenting. I did my presentation about EDS and it went really good. Everyone loved it (even the popular kids). I am very proud of myself.
Good!!! I'm glad it went well
Zebra Warrior1 good job dont think twice about the popular kids
Mickey, thank you for opening your life for us to learn about EDS. My 16 year old daughter was diagnosed over a year ago. Watching you helps me understand what she is going through.
Thank you for mentioning Chronically Jaquie. I'm glad you are informed on the risks of complications, especially having EDS and being a pediatric pt. You know your stuff. Good job being your own advocate.
I love you so much!!! These videos are my favorite to watch!! Hope you're doing well today!
Congratulations on graduating!!! I’m a senior this year and I’m starting to do some internships at physical therapy offices and I’m super excited! Plan on becoming a physical therapist 😊
My port does the same where it doesn’t want to give blood return but I can tell the needle is in! Love the videos
Congrats on graduating!! My son graduates on 6/5. Best of luck on your future endeavors. I’m thankful the worst of my health issues didn’t hit until my mid-20’s. I can’t imagine going through school with my health the way it is now
I was just rewatching Jaquie’s videos about her port. I am getting one soon. I still can’t believe she’s been gone so long!
Loving your daily vlogs!!!
I’ve had all kinds of tubes...J, GJ, and G tubes. I had two J tubes to be exact and they were both sooooo painful. I love my GJ even with it coiling frequently.
Oooooh two videos in one day? Yayyyy!!!
The video is one week ago.
I adore these videos ❤️ you are such a doll!
Am I ever so grateful for the fact that I am cleared to access my port on my own.
My Drs have walked through the steps for me and are happy about the fact that I know that as I am the one with the port it will be ME being the one to suffer with the infection should I not clean the skin appropriately before accessing so I am extremely neurotic about the cleanliness when accessing my port EVERY SINGLE TIME I access. And needless to say, I access twice a month.
this is awsome first port accesss filmed!!!hope all goes well with your graduation party, your awsome mickey
Love your videos Mickey! I’m doing a Physical Therapy intership with my college over summer while also getting my phlebotomy cert and I’m so excited :) I want to work in medicine and to be a PA in the future 😁
I do the watch thing all the time. I haven’t even owned a watch in a while but still check...lol
you are so cute and so confident I love it! I have something wrong with my eye and I was so nervous to start a channel because I didn’t want judged!! but you make me feel like I can do what I want and not care what people say ! So I finally started a channel !!! 💖💖
What college do you go to?
2 in 1 day. You go girl!!!
Glaf you came to a decisuon you're good with for the feeding tubes. I have been avoiding my gastro dr bc all he wants to do is a J tube for my gp (not even considering other tubes bc 'I'm too severe') and without any kind of feeding tube is pretty hard and not great atm but I know it's not the right choice for me and hoping he'll cool on the idea or I can figure out how to make a better case for something else. (Or my other docs get my other condition under good control as my stomach's way less grim when it is) x
I have probably got mine from both sides. Weird.
Nice birthday gift
I love your videos. So much I regognising from my youth.
Take care and laugh when ever you can, that is a great pain relief 💜👻
I'm soon 48 years old. Living in Sweden. Have EDS classic and a long list of other diagnosis.
Hi Mickey! Can you explain the difference between the different tubes? I know you say getting a J tube will help quality of life, but what do you mean exactly? What are the differences from what you have now? Thanks! Keep up the good work, I love your videos!
Show your biceps.
I hate passing out it sucks, congrats!! I wish I was graduating next year when I should but cause of my health I am 3 or 4 years behind in school 😑
I'm with you, Don't do anything surgically unless it's absolutely necessary.
YES I LOVE THESE VLOGS!!!! Also I LOVE the as you say "awkward" stage your hair is at. Yes i do because I love the natural color but with the ends being very blonde & I also love your hair at this exact length to maybe just above the shoulder. You look great in bobs..maybe you can try a "lob" (long bob). Just my opinion of course!! You are so beautiful either way & inside so beautiful. XxOo
Just curious but when you shower do you unnatach all of your ports or tubes or do you have to keep them in at all times? ❣️
Allie Gorsett i believe they just cover it with a tape cover or something tubes are waterproof i may be wrong
Well I’ve never had a port (I know when it’s not accessed you can basically take a shower without doing anything), but I had a cvl, and whenever I took a shower or anything (tubes or not), I just covered it with cling wrap the best I could. I ended up taking more baths during that time tbh since it’s easier to keep it out of the water that way
Hi ♡ I'm new to your channel :) I love you and your content! It's super inspiring! I'm struggling with doctors appointments and getting my diagnosis currently :/
Same..I hope you get answers soon
@@1jazzyphae I hope you get answers too :)
@@sarahjorenelt thank you💙
Hopefully you are feeling much better now. You are the one that has to make the decision on you feeding tube, please do what you feel is best for you. Not all tubes are right for everyone. Honestly if your tubes are working for you why change. Take care.
Where do i find the white v neck merch you had on??? I love it.
Amazing! She is a walking miracle
You have such a good personality!
Whoa! It's been a whole month? Where are you? :D
Tara passed away, so she needs some time to herself.
I’m glad you mentioned Jaquie’s passing and how it’s not a good idea for most people to get a straight J tube. I don’t think she really needed it in my humble opinion
Much love from a fellow Classical EDS Zebra! I got my EDS from my father, that is what the genetic testing showed. Great video!
I know for my son we are asking people to stagger their time when they arrive to his Grad party. We are also doing those close to him and it's ok so breath!
So you got your classical EDS from your mom .... does your dad's side of the family have EDS as well? If so could you have both classical and hypermobile type?
I really enjoy the vlogs!
Hey Mickey, I love watching your videos. I am a fellow EDS-er and a Tubie. I’m curious, if you already have a G/J what’s the difference in getting a J-tube? I have a PEG/J, but I’m confused as to why just a J-tube is more risky than the G/J you already have? Not trying to sound rude, just curious as to what the difference is. Keep on keeping on girly! 💕
That’s when you say, ‘My nurse will come in..... a hair past a freckle!’ 🤣🤪
Yes
Why do they put a patch under your port? I’ve never seen that before and don’t understand why it would be necessary...
Hi Mickey Love your videos
Love the vlogs!
I love your videos I am learning about eds. Your port is under the skin?? Do they have to cut the skin to access the port?? I am confused on how that works. What is the difference between a J tube and a gj tube?
Crystal Carroll there is a small needle that goes through the skin and into the port under her skin. A j tube goes into your jejunum(a part of your small intestine) and with a gj tube one part goes into your stomach and the other into your jejunum.
How did you know that your stomach stopped working? Or did it ever work? I have EDS, and have always had trouble eating in the mornings, but recently I’ve been throwing up and unable to eat for a couple of days now.
R there more complications for pej tube then a pegj tube also ur amazing keep up the good work xx
Love you so much
Many people inherit it from their mother, but my mother inherited from her father.
First like and comment I love your videos
I’m getting a whole exome panel too and they think I got my EDS from my mom. :)
Just Monika. I have it too!!! I have it from my mom too! I have type 3 hype mobility type so I dislocate a lot!
Maddison Purvis I currently am diagnosed with hEDS as well. I don’t dislocate as often as I subluxate, but my hips are the worst. :) Good luck to you
I love you so much you r so inspiring also I have a question for you does the hurt
Are you okay? I’m starting to get really concerned.
Early squad!
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First time see you video and you are pretty and god bless you and i hope that god cure your body because your so nice person
Can you do a house tour sometimes? And maybe show around if there's any aids to help with your everyday life, if you have any?
Does your dad use ports?
Me watching this because I’m scared to do this tomarrow 😂😭
Does your Mom have symptoms of EDS?
3:39 Is your watch so light that you didn't know you were not wearing it?
4:19 Of course.
4:33 It does make it easier to recognize when you are being sarcastic, which I like.
8:14 I hope you'll feel better soon.
8:25 Sorry, but...LOL
I cannot remember her name. Whats her name?
Cylie Miller Mickey.
I love your videos so much!!! If you ever wanna talk you can always dm me
How tall are you?
It would have been a private thing for me
ILove You Beautiful Pretty. 🤗🤗🤗🤗🤗🤗🤗
You may want to cut down the footage a little to cut out the spaces where you aren’t speaking even though they only last a few seconds. It would make the video feel more seamless
I love your videos. Can you do a video about managing periods with chronic illnesses? I have chronic illnesses and have had my period for a few years now and all the birth control I take either doesn't work well or causes a reaction with my mast cell. So if you have any that works please share it with me
I react to my periods but have always gotten very sick from bc pills so those are out of the question. Have you considered cloth menstrual pads or other reusable options? I find that personally I am less reactive to my periods when I use these items as opposed to anything disposable. Good luck with everything!
I take the depo injection. Before the injection I was passing out every month due to heavy blood loss. I was just diagnosed with EDS June 20th 2019.
Do you not know how to access your own port?
Hey