Vlogging with EDS: This is Just Where I'm At | Week 106 

I NEVER feel you’re complaining, Christina. I can’t believe anybody would think that. You always come across as so smiley and positive even though you’re going through such a lot. I know what it’s like to live with chronic illness and I really admire you for trying to make the best of a horrible situation. I hope things start to improve for you soon. Love from England!

You "complain" all you want to darlin' ....We're listening and care.

I can't believe someone told you that you are complaining. I see a total opposite; a really strong woman who has trouble breathing (I would FREAK OUT) and is in immense pain but chooses to see good sides to it and thinks about her sister, and tries to be productive, social, etc etc. The sheer idea of it all could break a person and you are here making 500% out of it. It's honestly so touching I cannot even describe it in words.

People who comment regarding how well you are entertaining them are not separating the realism of a RU-vid vlog of a chronic illness blogger from the other videos they see on their screens. You are not here for anyone’s entertainment. You have nothing to apologize about even if you were because you are Uber upbeat and positive, never a complainer!

You’re not complaining, you’re being real. This disease isn’t easy, and if you were always acting like it was, you would be misrepresenting our community. I appreciate your candidacy, and I also feel that, as much as you have been through, you have handled yourself with a grace and a spirit that most of us could only hope to inhabit. I love your videos! They have a bit of everything in them,; and I look forward to your updates every week. You have educated us, entertained us, laughed with us, cried with us, and kept those of us who are housebound company for over 2 years of your life. We have enjoyed every minute, and can’t wait for more!

You share your weeks with us, good or bad. You dont complain.

Whoever said something about you complaining is obviously lost. You are not here to be inspiration porn. I hate the idea that people who have disabilities or chronic illnesses have to always present this super happy face and facade that everything is great so that other people think it’s all OK. Like if you’re uncomfortable with the idea that someone with a disability has trouble and has something to say about it that’s on you. You are here to be real and this is real.

I don't think you complain. As a matter of fact I admire how resilient and patient you are with all your problems. I think I wouldn't be as positive if I were in your shoes. Keep being strong, I love it when you post 😘

There's a big difference between sharing what your going through and complaining!!!! Sharing is what helps other's understand these issues your dealing with, and helps those with a similar health conditions and what all goes with it!!! Guess what people chronic illness and pain isn't easy to live with and sadly there are more bad days than good, this is our reality, and pray other's would be spared from this kind of life... Everyday is hard, even when the smiles don't show how much it hurts!!!

As the mother of a 21 year old with HEDS, I want to tell you that you are an inspiration. The average 'healthy' person would crumble if they were forced to live one day with your conditions. You have always amazed me with your positive outlook and your willingness to take us all along on your life journey. To the people who made negative comments about the tone of a video, I say you have no idea the suffering EDS brings. EDS makes supermen and superwomen out of people. You, Christina, are a hero!

Your not complaining. Your teaching so many people! Hopefully the Drs. can figure this out soon 💜‼️

I don’t think you complain - you are you - being honest with you life and what is happening. ❤️

One more thing... Don’t give up ever! Your day is coming, your relief is coming, your body will get itself all in place where it’s saposta be. One of these days you will sleep great, wake up to live another wonderful day with no complications. Just give things time. Don’t stress yourself! Your so loved!

I watch videos for the people doing the things, not the things the people are doing!

I’m so glad that you don’t listen to those people that are saying that you are complaining! I honestly can’t stand people that complain all the time and I’ve always found your videos to be very informative. I’ve never felt that you were ever complaining. You just tell it like it is!

Whoever said that you just complain needs to shove off. You're doing great and your videos are amazing, and the realness in your videos shows what life for many of us IS EVERY DAY

Christina, first and foremost, you do not owe us anything! This is your channel and you control the content or the lack thereof. We, your humble fans, follow you because we like what we see. I, personally, am not chronically ill but I am entering my senior years and aging is kind of like a chronic disease because something is always breaking down in your body as you age. But while you deal with life-threatening issues, I deal with nagging issues, things that wear on you but aren't immediately lethal. You are a very brave young lady, especially for taking on as much of your daily care as you do and not relying on a health aide to get through your daily routines. Stay strong Christina! You have an iron will and a golden soul.

Hi Christina. Your continued optimism and gratitude for the smallest of "normal" things is amazing. I'm not as ill as you, but I'm also battling rare diseases (including MCAS and dysautonomia) and I understand the bad days when it's all you can do to just survive. The days I'm the most grateful for are when I don't have bad nausea and I can get a few things done around the house. Today's not one of those days. It's a bed and meds day. I wish I had a tenth of your great attitude and optimism. You're amazing, you really are. Love, Rozzella

Don't let people bring you down by complaining about these videos in the comments. I'm a "normal" healthy 20 something year woman and I understand that you are having a tough time. I know I can't grasp all the medical aspects but I still feel a connection to you. Msg me anytime on ig or fb we are connected on both I love your vlogs including this one. Love ya girl!

I don’t feel like you are complaining! People who watch your videos should know that they are about a person going through so much that they themselves would be overwhelmed. Shame on the person who said that. They are a coward- they would never say it to your face but they feel it is okay to pick on a chronically ill person. We love you- keep doing you!

Really sorry that people have been giving you flack for what they think is complaining. I've never thought you were complaining, to be honest I'm in awe of your positivity in the face of uncertainty and adversity. God has clearly blessed you with the ability to stay sane and keep moving forward while in the face of challenges that would send most people into severe depression. Seeing you create all sorts of things is a huge source of inspiration to me! When my health is struggling, my creativity is usually the first thing to go. If anyone is criticizing you then they're exposing remarkable ignorance and apathy towards you and what you're going through. You have nothing to apologize for, and I was SO glad to hear you say that!

Your such a strong inspiration beautiful lady. I love watching you and no it's ok to say your not feeling well you can say that with all the stuff you go through.

You have no one to apologize too!!!! You already are doing so much for all of us!

They obviously haven’t seen all you been through is they even THINK you complain YOU ARE ALOT MORE UPBEAT THAN MOST COULD BE 😍You’re amazing

I'm so angry at that comment you mentioned. Your illness seems exhausting. You put on a really brave face everyday. You're really strong. Keep doing you.

Gosh I don't know how you deal with all these things and still have such a positive outlook, it really is inspiring.

You aren't complaining, just telling your story of how life is going. You actually seem very positive and up beat especially for the circumstances you are dealing with. I have a couple braces I need to wear depending on the day and the events happening that day. You take care and don't let any negative comments get to you. Praying for you. God bless.

I can't believe you are only 22, you are so wise. And you can complain as much as you want but its really just sharing because you have to deal with so much! You are amazing! You amaze me how well you put yourself together. And I love your jewelry and fashion style. You rock and I wish you much better days soon.💕

You don't complain. You explain.

Dear Christina, never feel that you have to apologize for what you’re going through or what you share here on your blog. The fact that you take time to share with all of us is amazing considering what you’re dealing with. If someone doesn’t like the content of your blog, no one is forcing them to watch it. This is life, life with a chronic condition that we share, it isn’t always pretty or positive, but we do our best to carry on in spite of everything that encompasses living with EDS. You young lady continue to be an inspiration to me and I’m sure to many others, your determination to keep moving forward and even smile when you’re in pain is a testament to your beautiful spirit. Thank you for taking the time each week to let us have a peek into your world and how you manage your journey. I love you. Hug’s ✨🙌🏼✨🙏🏼✨🙌🏼✨💖✨💫 p.s. remember, you didn’t cause it and it’s not your fault. 💞💫

Sorry that you are having such a hard time..I pray that your doctors will find the solution to alleviate your discomfort💜 Please know you are AMAZING.. you remind me of what true strength looks like in the midst of daily struggle. I don't have a chronic illness, but you totally inspire me Christina.. thank you! 💜

Definitely love the idea of a dressing around braces idea because it is definitely difficult as well as trying to stay warm but not be too overheated when going to the hospital because I don't have a car so generally I have to get an Uber to my doctors in the big city and then deal with the weather there and then going into the hospital and then coming out of the hospital and waiting for an Uber so trying to be warm but not overheated and stuff like that with wearing braces is definitely something I would be interested in

you are loved, baby zebs ❤️⭐️💚💙💜

I hope you can find solutions to your spinal problems. You have a lot to deal with. I’m praying and pulling for you to get better. It’s hard to see you struggle and in pain. I hope your medical team and you can find a solution to better health .

Christina, you are an amazing young lady💜💜💜💜

HUGS n PRAYERS for you!! anyone that says you complain should spend a day in your shoes. You are such a positive person and any days that you are not positive are normal. I love your honesty!

Oh girl, I'm so sorry that you're going through this. When life is hard, you shouldn't have to make it look pretty to make others happy. The greatest gift you can give us is truth. I'm also chronically ill and I feel like a failure every time I don't match the optimism. I don't feel like a warrior, I do not feel brave, I do not feel strong, and my smile is often broken. And that's ok.

I’m hoping that you start feeling “normal” soon and find out what’s wrong with your spine. Ignore the naysayers, we love your videos and know you are sharing not complaining. Sending prayers your way.

I think your working too hard on others to the detriment of your own health . Your not capable of complaining , your testifying of your real life experiences . Chronic disease is not bright or sunny , it’s filled with pain and suffering. Just know we also have these times and need to know someone’s suffering with us . We love you so much and please tell Lauren we’re praying for her and love her too 🥰 . Happy Thanksgiving 🦃!

You're never boring! Let's face it, chronic illness doesn't take breaks. It comes and goes in waves of severity, but it's always there, lurking, waiting. I have my neurosurgeon appointment set for January in North Carolina, so if anyone is near Hendersonville, I'll be there from the 12-19! Hopefully by then I'll have some idea of what's going on with my own digestive tract as I see a specialist in Houston on the 27th. I had to plan all my appointments around my sons oral surgery follow up appointments. I didn't feel right taking any more time away from him getting his teeth fixed.. so, Christina I really do understand your dilemma. I'm dehydrated, malnourished, have malabsorption issues, dysphagia, and SMAS... but my son needs to get his dentures fixed and fitted so he can start eating real food and gaining weight. What's an extra week? Right?

So sorry you have been having problems with you spine and neurological symptoms. Prayers for you

Sweet, sweet Christina..... please ignore the comment from that individual!! I know how it is hun & we can only be positive when we are literally safe enough to do that. It's called Maslow's hierarchy of needs. Health & safety are pertinent to being able to be self realised (or to work in ones self/personality/cheerfulness). There comes a time when our batteries are depleted & that's where you are at. I feel honoured that you are sharing your journey with us all & I feel deeply connected to you when you are vulnerable & truthful like you were today ❤ Truth heals hun... I understand that is also difficult to be this vulnerable. I get it that you are trying so hard to just live.... I too am in that boat so understand that all too well... Yes we use positivity alot of the time, but its healthy to just tell it how it is sometimes. Keep being the wonderful, spirited person that you are & know that you have so much love & support here. We are with you sister! Anyone who isn't can kindly move on to somewhere else & watch something else. Big hugs from New Zealand. PS: I'm 45 years old & a trained cognitive behavioural therapist. I've spent years working on myself & with clients when I could, to help me deal with this EDS beast... You show much of the wisdom I've acquired over 20 + years. You are seen & heard for your strength & your beautiful spirit ❤ Keep being you! Big hugs love Nicole xoxo

I am sorry your going through this Christina. Hang in there, you will get through this.

A lot of people confuse realism with pessimism. Nobody is 100% all the time. Life is up and down.

Your puppy in the leaves ❤️❤️❤️❤️❤️

I love your vlogs Christina and I never feel you are complaining. Thanks for sharing the up's and the down's even if there are lots of down's lately, that's ok! Thanks for being honest with us and I will be praying that your health becomes more stable. Love you girlie!

Hi I just want to thank you for sharing all your trials and tribulations... I’m not going to pretend that I know what you’re going through but I grew up in and out of hospitals due to crowns disease and I now have a 7yr old son who has spinal muscular atrophy... so I can at least relate to your difficulties... As much as wouldn’t wish chronic health issues on anyone, I believe that seeing someone else going through issues is really helpful to soooo many people out there....Again thank you for being here and for sharing your story.

I agree! It’s not complaining it’s just saying how you feel which has been bad lately!

Dear, sweet Christina, you owe us nothing. Your channel is not supposed to entertain us - what you give to your followers is far more important than entertainment. You share with us the wonderful, funny and charming parts of your life - we should be willing to also be there for you during the overwhelming, painful and difficult parts. Your story is a real-life chronicle of the exceedingly difficult task of living with systemic, multiple chronic diseases. Those who have difficulty seeing the full range of what you deal with might just fast forward through those spots and refrain from leaving less than supportive comments. Many of us support you unconditionally and I count myself in that group.❤️

The fact that you were able to post a video this week is very impressive. Ignore the sucky people who say you complain, because you definitely don't sound complainy at all. You're literally just telling it how it is. I hope you feel better soon. Also, you don't even have to make these videos, you're doing it because you want to. So those people can lay off and appreciate it when you can post something. Also, a fashion video would be neat. All the best!

I’m praying for you sweet girl. Keep being yourself. You are educating us and somehow encouraging as well.

You should never feel like you have to apologise for being in the situation you're in. Christina you do so much already, from keeping your body together, to spending time with family & friends, and so much more that we don't see! When you upload these videos, or use other social medias, you are a source of joy for many people and especially us chronically ill people! Every week i look forward to watching your next vlog, and i follow your instagram and i love seeing what you get up to and create. Some people always have to find something to complain about, but you should never have to justify why you can or cannot do something, how you live your life, or what you share online. You do you, and as long as you're happy, that is all that matters :)

You are NOT complaining. You telling us how you're doing is what we signed up for. Please don't let silly comments like this get to you. You're such a strong and impressive individual. Don't let anyone tell you otherwise!

You've been through so much. You do you :) you're allowed to have feelings 💜 you are perfect just the way you are.

Oh whatever to anyone who says you “complain.” If anything, it’s very clear things are way harder than you often let on. Just always tell the truth of wherever you are and whatever you need in the moment. I’m here for it all: up, down, joy, pain, horrible, miraculous, beauty, mess. When you need to pretend, pretend. When you need to vent, vent. No positive spin ever needed. You’re an artist. Your one job is to tell the truth. Every time you do (no matter what that truth happens to be), you become a light in the darkness. So proud of and grateful to you. Xoxo.

You are such a courageous young lady. God bless you, sweetie.

Love the brace dressing video! Don’t listen to those other people saying negative things... we only see like 20-30 minutes of your week. There’s no way people can judge you negatively based on this content. Life is life. Life is real; and sometimes life sucks. I hope you start feeling better soon. I am wishing you well and keeping you in my thoughts. 🙏🏻

I watch your vlogs every week no matter what!! Keep up the good work of keeping yourself alive and working! Lots of prayers sent your way!!

Christina, I appreciate your honesty and openness, and I'm sorry you're having a hard time. Ignore mean comments! You're an incredible human!

I know it's hard to do, but please try not to feel bad/guilty if your surgery needs to be close to your sister's. It's not your fault, and you need what you need. I'm so sorry you're going through so much!

I love your videos because you tell it how it is and you are just you. Whether it is a good day or a bad day, you are sharing your life and shouldn't feel you have to spin it some way for the people watching. You are so strong and lovely, and I, like many, am keeping you in my prayers. Lots of love from your Canadian friends :)

Ignore the person who was so negative. I think you are handling all this so well. I don’t think many people would be able to handle this with the grace that you do. Hugs.

Really sorry this is happening. Gentle hugs to you.💙 Being honest about the hard stuff is NOT complaining. 😊 Love all your vlogs whether you are stuck in bed or having surgery or going to watch a musical. Just happy you take the time to make them.

i know you don't want to make more stress on family and lauren but your life is important as are you i have never met anyone so unselfish so caring putting anyone before yourself even if its hard on you pls christina never doubt how important you are to so many and we all are here for you you can complain all you want stay strong xxxx

i think you have a right to complain honestly, but even so, you don't really complain in these vlogs. you just show us your life and how you're dealing with Life in general, whether that's great or terrible. sending you so much love x

I don't think you complain too much and until someone walks in your shoes and deals with what you have to deal with I say Shut up! You are so damn amazing and I love your family. Hang in there sweetie. xoxoxox

You complain less than anyone I know and you have more reason to than most. You are a ray of sunshine and you inspire me to keep moving forward! I love and admire your honesty about your life, because it's something I haven't worked up the nerve to do yet myself. I'm so, so sorry your body won't let you have a break. I'm always sending hugs and positive energy your way

I have never heard you complain! Don't worry about random l negative comments. I've watched every single vlog, and you need to share what is going on in your life. It's not complaining! Don't worry about positive..... Vlog your life, people love you!

I am so sorry you are having so much difficulty. Just know that you are not alone. I can totally relate to how you are feeling. I have been learning how to talk about my struggles with my health, and I worry that I'm complaining a lot, but you put it so well. You're just saying how it is, and sometimes "how it is" sucks and that's okay. Keep smiling, you really are beautiful.

Darling this is YOUR vlog and you can say whatever YOU want. I’m here for you whenever you need me xxxxxxxxxxxxxxxxx

I think I speak for quite a few of us when I say the only reason I want to see more positive content is because I want YOU to be having more positive things happen in your life instead of struggles, and don't want you to be feeling so terrible ♥️

You are right! You are human and I feel you do not have to ever apologize. EVER... From one chronic pain patient to another its ok to vent, scream, yell, cry. Never keep it bottled in. I think most of us here understand and would never be upset by that.💜💛

Brace fashion sounds good but only if you're up to it 💕

Take care of you! We understand you need to take some time for yourself! Another day, is just that, another day. Take some time for yourself! We love you!

I admire your positive attitude and strength as you face such adversity. I'm just praying for you to be healed some how and wish a normal life for you. It's hard to see such a beautiful vibrant young lady go through so much.

You make me feel so grateful that I only have my neck fused and screwed. You are just such a positive person and I hate to see you in pain and upset. Sending on my love from the 🇬🇧 U.K.

No apologies necessary! You do you, and we'll just be grateful you use up your spoons putting out this content. Whatever that may look like. I've had spinal issues like you're describing, it sucks and it's debilitating so rest up and hang in there. Sending love from New Zealand xo

It’s not complaining, it’s you verbalizing your frustration!!

I’m glad to hear from you. Everyday is not roses when you have a chronic illnesses. Today for me is just curled up in the bed in pain. I watched your videos from the beginning and now that I’m caught up I may have to go back and rewatch again.

I don't think you complain but if some people think you're complaining, then you have every right to. It's your vlog and you're talking to process everything going on. Keep doing what you're doing, I enjoy your vlogs and i always feel your positivity coming through 💜🦓 Hoping you get some answers and improvement soon regarding your back pain!

Love your videos. You can’t help being sick.

I still look forward to your vlogs every single week and I don’t think you’re complaining. I find your honesty refreshing and it helps me feel less alone! 💗

Never commented but always watch your videos. I never feel like you complain, and your spirit inspires me everyday. Thought I would let you know.

Omg Christina, sending big love. The person who said all you do is complain should try 'empathy' you do amazingly and I see you as the most NON complainy person, you are sunny, thoughtful, compassionate, interesting and intelligent all of this comes through in your videos, oh and humour! If someone who watches your videos does not pick up on this, then it's on them and not you. It seem a lot of people are oblivious to chronic illness and disabilities, they don't understand. I'm sending you lots of love and good vibe energy to help you get through this xxx

You are like Xena Warrior Princess! You battle all kinds of physical things coming at you and you kick ass! Your braces are like battle armor. You are like yeah I can't swallow water but I don't need to act on that yet. OMG You are so tough! With all you've got going on you are still going to appointments and having a friend over all the while always looking beautiful. I think you can show the downside to being a warrior princess too. It's discouraging to prepare for battle again and again. It's okay to be upset about that. I am so sorry your body is giving warning signals again. In my opinion just stating the way things are is not complaining. I think it is just being honest. The way you work around physical challenges with a positive attitude is inspiring. It is okay with me if you don't feel positive though. Even Mary Frey cries sometimes and gets frustrated. I am sending hopes that the doctors have great judgment about what will help and that it is not hard on you. Thank you for sharing your life with us. Prayers for you, your sister and your family. 💜🌙⭐

You are one very brave and strong girl.

I'm glad you don't feel like you need to apologise, because you don't need to. I really do enjoy watching your videos. I'm still not sure how I even found your vids, since I don't have EDS lol But I'm very glad I did. You just do you and don't listen to people that try to put you down. If she/he doesn't like watching they can just unsubscribe :)

Keep up loading. I always look forward to ur videos ! If ur complain about being in pain complain girl. Ur human. I'd complain to as well as everyone else I'm sure ! Get better soon

No, you're not complaining! You're being entirely real with us and I love it. Keep doing you and I hope your bits start cooperating more for you 😊💗🐶

NOOOO no the spine again!! I hope it ends up for the best. LOVE your videos. They are always interesting

I like watching your vlogs BECAUSE you tell us/show us how your life really is! You are telling us about your reality, things that happens, how you fell about it, and I like that. If a person mistake that for complaining, they can go and watch vlogs that do NOT show life IRL. I am so sorry your body is giving you such a hard time, I really do hope you won't need another surgery. Hugs! ❤ / Disa from Sweden

Girl I feel you SOOOO MUCH!!!!! Don’t apologize to anyone.... they don’t get it!!

OMG hunni ignore that other person you are going through a lot of medical issues and keep us up to date, so never think that you are complaining. We love you and we are here for you no matter how bad your day is. We watch you so you have a community to talk too - that's not complaining to us xx

Love your positive outlook

Who think we should have a day in Sammy's life video! 🙋

You are an amazing young lady. Your face is still smiling still with everything you are going through. You are so strong, thank you for being honest with us. You sound positive whatever you speak about. Sending you buckets of love and healing wishes beautiful young lady. Xx

I feel your pain, girl. The emotional, mental, and physical turmoil of keeping up with EDS (especially when it involves major spinal instability and head complications) is so incredibly hard. It's compounded even more when things happen one after the other. And trying to maintain a facade is impossible-- you shouldn't have to feel bad for talking about what's happening. Like good ole Dr. Seuss said, "Those who matter don't mind, and those who mind don't matter." We care about you and want to get these updates! You have helped so many in the EDS community ... I know that my last several months of spinal surgeries and septic shock have been much easier knowing I'm not alone in the battle, and that someone literally understands what it's like! Thank you for your hard work, transparency, and compassion. I feel so blessed to have stumbled upon your channel two years ago!

You are not complaining. It’s so hard when we have set backs but you can get through this.

Cristina we love to know how you are ,you don't complain at all ,you are going through so much ,it is so hard when you have chronic illnesses, you have more then enough then alot of people bless you stay strong and if you want to complain you go for it girl you have a dam good reason sweetheart ,love watching your vlogs see you in the next fingers crossed for your back love x

Christina your an amazing young woman going thru so much. Don't waste one second of your valuable energy on any negativity! Continued prayers for you and your family!