I love Lauren Daigle’s music. I find them so inspirational. Especially her song” You say”. I have my nails done, I have the zebra 🦓 stripes on my ring fingers. With hope we can get far, when we feel like throwing in the towel, just remember that God is right there beside us. I look at it like this: we’re all one herd, and we’re suppose to be there for each other, be there for them to lean on!
I so relate with loosing friends from chronic illness. It's been 6 years and my grandparents still think I'll 'get better'. It's comforting in a wierd way that I'm not the only one struggling with isolation, the 'i use to be able to..' and so many doctor appts with no answers
I cannot thank you enough for making these videos. For spreading awareness and helping to break a lot of stigmas of chronic and rare illnesses. My daughter was diagnosed with EDS about 6 months ago just after she turned 12. She has been through so much since she was 4 when she was diagnosed with advanced stage metastatic melanoma. Her symptoms of EDS became more evident during her treatment and it took us 5 years to find the right doctor to get the diagnosis. She has been diagnosed with so many different things in that time but there always seemed to be some piece missing and that was EDS. All of your videos have been extremely helpful. We've only just found you a few days ago but already they have filled us with so much hope. You are like a mighty little miracle. Your sunny disposition and beautiful smile are just what we need to remind us this might be difficult but we can get through it. One of her biggest struggles is using a wheelchair when she goes out of the house (she'd rather just stay home) for more than a few minutes. She's always felt like people were staring and if she got up for some reason like it hurt too much to sit any longer people's looks get strange like you're not supposed to do that. Again I can't say thank you enough.
I love your personality so much. Been watching ur vids 3 days straight. I rly hope things get better for u, they find a cure or what ever. I totally understand the isolation part. Since I struggle with a few mental health stuff... sending lots of hugs
You should Watch “The Fosters” or “Glee”! Those are my two current favorite shows! I’ve also watched “Greys Anatomy” all the way through about 3 times 😂
Do you watch The Frey Life or Chronically Jaquie? They both battle chronic illness, one being cystic fibrosis and the other has some of the same conditions as you, and both have adorable service dogs. I think you'd like them. Do you ever want to get a service dog?
Meredith Wood I watch both and love both!! I do want a service dog! I am working with my own dog for the past 5-6 months to train her as potentially a service dog but she has a long way to go before she will be fully trained if she is able to complete all of the training
I just found you tonight. My first CZcamsr that I started following was while my son was in the hospital. And it was... THE FREY LIFE! I loved that you had the bear sticker on the back of your phone. I’m sure Mary loves it! I really enjoy watching you talking with a smile. That makes such a big impact. 😀
Omg your fave Netflix shows are mine too... greys is so amazing. But I think I've cried more at that than at real life 😂. I have EDS and plenty of the co-morbidities too. Your videos are super informative. They are also really helpful as I don't feel so alone. Keep on keeping on. 😊😊
Just a clarifying question. Is the reason you are on the natural whole formulas is because of your Mast Cell? I totally empathize will all the issues you have. I am an 18 year old girl and I am starting college in two weeks and I did not expect all to start college being 100% TPN dependent on 2.5 liters to keep me alive and needing a central line to live. My whole high school career extracurricular wise was ruined because of my Ehlers-Danlos. For me it start with severe joint instability and so I had to quit violin, something I loved so much and had dedicated so much time to, and then I was diagnosed with Central Adrenal Insuffiencey (completely unrelated and another rare condition to the EDS), then Dysautonomia, and then GI issues. The over these past 7 months my GI issues have just continued to get worse and worse until the point where the NJ I had was not working for me anymore and now I need TPN. I saw a specialist last week and it was recommended to go ahead and get the GJ tube (my parents have been very resistant to this idea because of the idea of being fed through a tube for a long period of time even though I had an NJ tube from January until the end of July; I finally had it taken out 3 weeks ago because of the line infection I had I could no longer keep it down and the irritation was killing my nose and throat.), and then the ileostomy and my parents are really struggling with these needs of mine. It was recommended to get it done as soon as possible because of the whole central line risks and being on TPN is even worse for central lines. This was not the path I imagined at all but I am definitely grateful for not having an NJ right now until I get my GJ and it is nice to see my face completely bare for the first time this long in 7 months. I had to graduate and go to a prom with an NJ tube and even though I rocked it I still wish my parents would have considered the GJ tube sooner like my doctors here at home had been saying (the motility specialist saying it really helped) and I think they are more open to the idea but they are still a but resistant. Out of everything m relationship with my parents has been the most strained because they are very resistant to the things that could help me and are hoping for some easy fix or magic pill to fix all my issues. That is so frustrating to me.
I'm so sorry to hear this. It sounds like you're really struggling and trust me I get that! To answer your question about the formula, MCAS is one of the reasons. I have many food intolerances which we suspect are caused from MCAS. But also we didn't like the ingredients in normal formula because they are surprisingly bad for you! Most are made of High fructose corn syrup, vegetable oil, sugar, and other ingredients that aren't helpful to your body. Not all formulas are like this but I can't have any dairy which cuts out a lot of options and i can't have sugar which basically eliminates most formulas that aren't real food blends. I hope this answered your question! If i missed anything or you have more questions ket me know! I hope you can get things figured out with your health
I don't blame you with the normal formulas because most of the time they are high fructose corn syrup with some vitamins added. When I tolerated NJ feeds I was started on Osmolite 1.5 and I did fine on it. But with the issues I had with toleration now we switched it to Vivonex RTF (the most broken down food on the market) so my gut has to do no work to break things down. We have things kind of figured out what is wrong wise, the issue is treatment wise I have exhausted all options so basically TPN, GJ tube, and Ileostomy are my only options at 18. We are starting with the GJ and I am hoping to get my PICC line switched to a Hickman line or port for long term use and they better for infection risk wise. I see a new GI doctor tomorrow to rapidly get a GJ placed and possibly a better central line. My GI issues are so complicated.
I love your tips for people with chronic illness (i have several myself), you get it, we can't be positive all the time, I love what you had to say about hope, and focusing on what I can do instead of what I can't do. When I tell people I'm sick , they act surprised because I'm young and I don't look sick, and I can work. I always say, you know I can't do things like I used to do, or for as long, and I have to take more/breaks and I have to have help or do things differently than I used to, I still do the things I love even if it causes me pain (cause I wouldn't be able to do much of anything if I never wanted to be in more pain). Ya it sucks and I do cry sometimes, morning the loss of my old self that used to be stronger and do gymnastics, etc but I still do things I love, I just have to modify them to fit a body that doesn't work right!
All of my friends think I'm crazy cuz I have eds so I binge watch Netflix all the time when I have to stay home from school so I have watched some of my shows up to 9 times just cuz there is nothing else I can do when I am having a pots episode or something like that
I just found your channel and I have some medical issues too. Not as serious but still I can relate to you medically but also you seem like a really cool person and I would love to talk more.
This comment is rather late so I don't know if you will answer, but I was wondering where you plan to go to become a service dog trainer and how somebody can become one?
I have eds and was recently diagnosed with orthostatic hypotension I was wondering how do you explain ehlers danlos to people because when I go to school I usually have on at least a couple braces and every on always ask what's wrong with me a I have no clue what to say I have only been diagnosed for about 4 months PS you are one of my favorite CZcamsrs
Hailey Sanns when I get asked what EDS is, I just say that its a collegian abnormality which affects my joints which means I have to wear supports and braces to help my body function. If that doesn't work then just tell them that you have joints that don't work properly because to explain it in context takes ages
So EDS’s symbol is zebra and that is because doctors are trained to look for the most common answer like horses but rare diseases do exist back to the horse analysts zebra exist they are just less common so basically it is like doctor are trained to look for common things but uncommon things are there to
I love Lauren Daigle’s music. I find them so inspirational. Especially her song” You say”. I have my nails done, I have the zebra 🦓 stripes on my ring fingers. With hope we can get far, when we feel like throwing in the towel, just remember that God is right there beside us. I look at it like this: we’re all one herd, and we’re suppose to be there for each other, be there for them to lean on!
I so relate with loosing friends from chronic illness. It's been 6 years and my grandparents still think I'll 'get better'.
It's comforting in a wierd way that I'm not the only one struggling with isolation, the 'i use to be able to..' and so many doctor appts with no answers
I cannot thank you enough for making these videos. For spreading awareness and helping to break a lot of stigmas of chronic and rare illnesses. My daughter was diagnosed with EDS about 6 months ago just after she turned 12. She has been through so much since she was 4 when she was diagnosed with advanced stage metastatic melanoma. Her symptoms of EDS became more evident during her treatment and it took us 5 years to find the right doctor to get the diagnosis. She has been diagnosed with so many different things in that time but there always seemed to be some piece missing and that was EDS. All of your videos have been extremely helpful. We've only just found you a few days ago but already they have filled us with so much hope. You are like a mighty little miracle. Your sunny disposition and beautiful smile are just what we need to remind us this might be difficult but we can get through it. One of her biggest struggles is using a wheelchair when she goes out of the house (she'd rather just stay home) for more than a few minutes. She's always felt like people were staring and if she got up for some reason like it hurt too much to sit any longer people's looks get strange like you're not supposed to do that. Again I can't say thank you enough.
I love your personality so much. Been watching ur vids 3 days straight. I rly hope things get better for u, they find a cure or what ever. I totally understand the isolation part. Since I struggle with a few mental health stuff... sending lots of hugs
I absolutely love the word of the year idea! Gonna have to steal that one.
You Are wise beyond your yrs!
You should Watch “The Fosters” or “Glee”! Those are my two current favorite shows! I’ve also watched “Greys Anatomy” all the way through about 3 times 😂
Your business ideas is a niche.
You're such an inspiration!
Do you watch The Frey Life or Chronically Jaquie? They both battle chronic illness, one being cystic fibrosis and the other has some of the same conditions as you, and both have adorable service dogs. I think you'd like them. Do you ever want to get a service dog?
Meredith Wood I watch both and love both!! I do want a service dog! I am working with my own dog for the past 5-6 months to train her as potentially a service dog but she has a long way to go before she will be fully trained if she is able to complete all of the training
I love them.
I just found you tonight. My first CZcamsr that I started following was while my son was in the hospital. And it was... THE FREY LIFE! I loved that you had the bear sticker on the back of your phone. I’m sure Mary loves it! I really enjoy watching you talking with a smile. That makes such a big impact. 😀
Do you still have EDS.
Omg your fave Netflix shows are mine too... greys is so amazing. But I think I've cried more at that than at real life 😂. I have EDS and plenty of the co-morbidities too. Your videos are super informative. They are also really helpful as I don't feel so alone. Keep on keeping on. 😊😊
I also love that the tape on your tube is a love heart ❤️❤️
Just a clarifying question. Is the reason you are on the natural whole formulas is because of your Mast Cell? I totally empathize will all the issues you have. I am an 18 year old girl and I am starting college in two weeks and I did not expect all to start college being 100% TPN dependent on 2.5 liters to keep me alive and needing a central line to live. My whole high school career extracurricular wise was ruined because of my Ehlers-Danlos. For me it start with severe joint instability and so I had to quit violin, something I loved so much and had dedicated so much time to, and then I was diagnosed with Central Adrenal Insuffiencey (completely unrelated and another rare condition to the EDS), then Dysautonomia, and then GI issues. The over these past 7 months my GI issues have just continued to get worse and worse until the point where the NJ I had was not working for me anymore and now I need TPN. I saw a specialist last week and it was recommended to go ahead and get the GJ tube (my parents have been very resistant to this idea because of the idea of being fed through a tube for a long period of time even though I had an NJ tube from January until the end of July; I finally had it taken out 3 weeks ago because of the line infection I had I could no longer keep it down and the irritation was killing my nose and throat.), and then the ileostomy and my parents are really struggling with these needs of mine. It was recommended to get it done as soon as possible because of the whole central line risks and being on TPN is even worse for central lines. This was not the path I imagined at all but I am definitely grateful for not having an NJ right now until I get my GJ and it is nice to see my face completely bare for the first time this long in 7 months. I had to graduate and go to a prom with an NJ tube and even though I rocked it I still wish my parents would have considered the GJ tube sooner like my doctors here at home had been saying (the motility specialist saying it really helped) and I think they are more open to the idea but they are still a but resistant. Out of everything m relationship with my parents has been the most strained because they are very resistant to the things that could help me and are hoping for some easy fix or magic pill to fix all my issues. That is so frustrating to me.
I'm so sorry to hear this. It sounds like you're really struggling and trust me I get that! To answer your question about the formula, MCAS is one of the reasons. I have many food intolerances which we suspect are caused from MCAS. But also we didn't like the ingredients in normal formula because they are surprisingly bad for you! Most are made of High fructose corn syrup, vegetable oil, sugar, and other ingredients that aren't helpful to your body. Not all formulas are like this but I can't have any dairy which cuts out a lot of options and i can't have sugar which basically eliminates most formulas that aren't real food blends. I hope this answered your question! If i missed anything or you have more questions ket me know! I hope you can get things figured out with your health
I don't blame you with the normal formulas because most of the time they are high fructose corn syrup with some vitamins added. When I tolerated NJ feeds I was started on Osmolite 1.5 and I did fine on it. But with the issues I had with toleration now we switched it to Vivonex RTF (the most broken down food on the market) so my gut has to do no work to break things down. We have things kind of figured out what is wrong wise, the issue is treatment wise I have exhausted all options so basically TPN, GJ tube, and Ileostomy are my only options at 18. We are starting with the GJ and I am hoping to get my PICC line switched to a Hickman line or port for long term use and they better for infection risk wise. I see a new GI doctor tomorrow to rapidly get a GJ placed and possibly a better central line. My GI issues are so complicated.
I love your tips for people with chronic illness (i have several myself), you get it, we can't be positive all the time, I love what you had to say about hope, and focusing on what I can do instead of what I can't do. When I tell people I'm sick , they act surprised because I'm young and I don't look sick, and I can work. I always say, you know I can't do things like I used to do, or for as long, and I have to take more/breaks and I have to have help or do things differently than I used to, I still do the things I love even if it causes me pain (cause I wouldn't be able to do much of anything if I never wanted to be in more pain). Ya it sucks and I do cry sometimes, morning the loss of my old self that used to be stronger and do gymnastics, etc but I still do things I love, I just have to modify them to fit a body that doesn't work right!
Anna M i so relate.
Great video, and thank you for posting!
All of my friends think I'm crazy cuz I have eds so I binge watch Netflix all the time when I have to stay home from school so I have watched some of my shows up to 9 times just cuz there is nothing else I can do when I am having a pots episode or something like that
I did college online because that’s when my health started getting really crappy. Going to college school online was a pretty cool experience.
Online college is wonderful! I got my associates almost entirely online through a local community college.
You can get a certificate in entrepreneurship.
I just found your channel and I have some medical issues too. Not as serious but still I can relate to you medically but also you seem like a really cool person and I would love to talk more.
I love your videos so much 💖 I'm currently looking into an EDS diagnosis, can you make a video about how you got your diagnosis?
Sure! Thanks for the video request! I can't tell you when it will be up but I am adding it to my list of videos :)
I love Lauren Daigle too! I'd love to hear the story about how you met her.
I cannot believe you are 16!!
Trisha Lenon funny you say that because today's my birthday so I'm 17 😉
Can you eat or drink anything at all with the feeding tube?
You should make a video on meeting Lauren daigle
This comment is rather late so I don't know if you will answer, but I was wondering where you plan to go to become a service dog trainer and how somebody can become one?
I have eds and was recently diagnosed with orthostatic hypotension I was wondering how do you explain ehlers danlos to people because when I go to school I usually have on at least a couple braces and every on always ask what's wrong with me a I have no clue what to say I have only been diagnosed for about 4 months
PS you are one of my favorite CZcamsrs
Hailey Sanns when I get asked what EDS is, I just say that its a collegian abnormality which affects my joints which means I have to wear supports and braces to help my body function. If that doesn't work then just tell them that you have joints that don't work properly because to explain it in context takes ages
I just got diagnosed with the same thing last week.... I hope you have been doing well bc rn my body feels like its giving up on me!
you figure skated?!
wait why is her channel called life with Stripes? Sorry for the dumb question
So EDS’s symbol is zebra and that is because doctors are trained to look for the most common answer like horses but rare diseases do exist back to the horse analysts zebra exist they are just less common so basically it is like doctor are trained to look for common things but uncommon things are there to
Ugh liquid hope screwed my tube up sooo much. Never again..
Do your college online.
I am also chronically ill, where do you live?
New sub such a cute
Can you go swimming? This is probably a really personal and dumb question but, can you have children?
Are you a wheelchair user
Ben Collins SHE has a video on her channel. Yes she is useing a wheelchair. But not fulltime.
😀😀😀😀😀😀