Hi I'm Christina, I'm a 21 year old girl living with EDS (and its lovely associated conditions) who loves to paint and draw when her body allows. This channel is a place where I will document my life living life with Ehlers Danlos Syndrome and associated conditions, answer any questions you may have and hopefully continue to upload more time lapse art videos and tutorials alongside! My goal is to raise awareness but also create a community and a safe place to talk about chronic illnesses and how to live a positive happy life despite their challenges. Please also check out my subscribed pages and playlists to find others like me (and maybe you)! And please always feel free to message me or leave a question in the comments! I would love to hear from you!
Пікірлер
Yay!! You are back and it’s such a blessing to have you. Many have reiterated already that the length of your videos don’t matter, and they truly don’t. I am just here to offer my support and show you love and kindness through every “like” or “comment” I make. Praying for the best for you. And from one shunted individual to another, I too have a shunt but I have a VA shunt, I understand the struggle. Much love ❤️ and hugs 🤗 being sent your way.
That's gotta be the craziest sensation and pain in the world to experience with you whole spine literally collapsing on its spinal cord and discs slipping everywhere! Like you might be one of the only few hundred people in the world to experience that! I have been watching your vids recently cause I am due for a revision surgery for Chiari at age 23 and my first surgery was at 4 in 2005. My L spine is already arthritic too and my CCI is getting worse. My lumbar spine is also losing its lordosis for some reason. I have had tethered cord surgery back in 2007 so maybe thats why? Its weird. I am doing as much PT as I can to avoid any type of fusion so I can continue to drive and birdwatch. I also have EDS which I have mostly kept it controlled with PT and muscles strengthening as well. Thank you for sharing this! I hope you continue to have a good life and I will still follow your journey! There are many of us out here who feem your pain!
Your hair is so beautiful
Wē menn wǣron on wambum ġesmiðode ealdra steorrena
😣! Sending you lots of positive vibes and gentle hugs from a fellow EDS Zebra 🦓, I have subluxated my ankle just from getting clothes out of the washing machine and putting them in the dryer. So now I try to stay put and just toss them into the dryer while standing in front of the washing machine.
I am so, so happy for you. Your ability to withstand all of this is mind boggling.
What an absolute Godsend these surgeons have been. I'm so grateful to God for putting them in your path. He's been looking out for you. Work in progress... Aren't we all? I'm praying for you. **hugs**
This is ONLY to make you giggle when you sneeze or whatever, but you can now say to yourself that every time you sneeze, "Oh no, did i just pop a Rod?" Lol I have internal bleeding amongst a ton of nerve issues, and 2021 was a hard year. I needed around 48 units of blood just that year. Anyway, my family's way is to make silly jokes out of horrible situations without hurting anyone, and my dad nicknamed me, "the lazy vampire." Because the blood was being brought to my port. I told him it's because I didn't like getting my teeth dirty. (That's our sense of humor) need a way to calm the nerves and make those around you more at ease. 15 years of this hoopla and 12 surgeries and a couple of organs later and I'm still no closer to an answer/cure/help. How many autoimmune diseases can one person have? I believe I'm kicking my own BEEP! I love your personality, girl.
I am so debilitated every single day that I literally cannot do a hobby. My health is still declining.. I can’t do any of this. I really don’t know what to do anymore. I don’t have any good days anymore. I have worst days and worse days..
Hope you'd having a good evening Christina
I had CCI & AAI.. got fused C0-C2 with Dr. H…. 2 years later a physical therapist dislocated my C4/5. Dr. H fused my c4/5/6 anterior. I had another neurosurgeon in Detroit where I lived ( during Covid) fixed my tethered cord, but I busted my dura within 2 weeks and needed another surgery to fix my dura healing on outside of my spine!
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Christina I have a question what do doctors use port a cath used for blood work
i love that ur back i love love ur leather bracelets did you make them i would love one how much did it cost? And again soon happy ur back its so relaxing to rest and have a coffee and relax w you again
Hi Christina! Merry meet! The algorithm somehow sent me here and you definitely earned my sub! You made me feel like I was hanging out with an old friend and just catching up. I'm so glad that you have been able to regain your life. At one time, I was completely homebound and just trying to get to that next pain pill. My health stole a good portion of my ability to raise my daughter, which I've come to terms with. I share some similar health stuff with you, and we have a lot in common. My surgery count,😮 mostly orthopedic, is at 27. Sadly, 28 will be next month. I do have a channel, but I've not posted any health stuff in a long time. There's a video that I'm really proud of, though, detailing a bad day. Looking forward to more videos and catching up with your old work. Hugs 💜💜💜
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My grandad had a spinal fusion and unfortunately he got mrsa and then sepsis after the surgery in his spine and it ate away his spine and his spine literally got eatin in half from the infection so it started dangling in half basically and they tried to clear the infection but then the infection went to the brain and he died a horrible painful death that I wouldn’t wish on anyone 😢 ty for telling your story I’m supposed to get a spinal fusion also due to degenerate disc disease and fractures in my L5 S1 and now in my neck I also have another disease spondylitis but with what happened to my grandad I refuse 😢
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@@elkedoherty3083 yes it was absolutely traumatizing 💔😣
Christina this is a great video
Christina how many ways can they place a breathing tube
Idiopathy can become a way of life with Ehlers-Danlos. I’ve heard I don’t know or there’s nothing left to work with so many times.
Imagine all of your tragic and excruciatingly difficult experiences, have built into a knowledge for future surgeons to draw from, and make others lives better.
So glad you’re doing so much better!❤️
Christina I heard redbox is going out of bussniess
Hi Christina I'm wondering why shunts that are supposed to help people like you and me don't last long they say the window is anywhere between 10 minutes to 10 years go figute
I would say 6yrs, as you were gone for 4yrs.
I cried so much watching this , im so happy for you 😢
Hi Christina I hope your having a good day
My beautiful girl you are so amazing, love you to pieces
I’ve followed your journey for years so glad you took the time to share your experience and knowledge with us ❤
I know you very likely have no idea who I am, but you are the reason I know what eds is and how I've been able deal with it. I'm finally, after 8 or 9 years getting an appointment to get my diagnosis. I'm 21 now and I'm so lucky to have been able to get a jump start at 12 all because if you. I can't thank you enough for the information and guidance you have given all of your viewers and im proud of you for knowing when an event is too fresh to talk about, after all, you need your oxygen mask first! I've seen every one of your videos and they have changed my life for the better, thank you so so much ❤️
I agree with you saying that your past surgeon was big enough to admit he was at the end of his experience. I had a gastro consultant who said he had done everything he knew to do for my problem but the difference in the UK is that he referred me to a different person in London but I admired it too when he said he didn't know what to do. It is a hard thing to do and I'm glad he did and I'm grateful for all he did like you xxxxxx
It's absolutely amazing to see you again! You look so rosey cheeked and healthy! I was always so worried for you, especially when you had that awful nurse afrer surgery that left you alone. I am so happy for you to have a beautiful life! All the best! Love your content!
Gosh I have so many awful nurse stories. Maybe one day ill share some 🤣 But you are such a sweetheart 💕 Thank you!
You have such incredible resilience. You do what you gotta do to survive throughout all that time, and even with all the trauma, you find a way to help people where you can. It's so good to hear that you're doing better now than you were a few years ago. You're a bright light in this community, and I hope you continue to thrive and shine.
You had your turn around surgery the day after I had my OC5 fusion which provided so much infrastructure and relief. Today is the one year anniversary of the second detethering and I’m lying in a hospital bed watching you after getting the last of the screws out from an acdf done in 2019. (I am allergic to titanium evidently so I had to have all hardware removed. The OC fusion was removed last May.) Your willingness to share your story directed my focus back in 2017-2019- when I was getting zero help from the local medical community. So it’s very fitting I’m lying here watching you talk about your turn around I’m incredibly saddened by your journey and I’m also incredibly grateful that you persevered as you have! Bravo! And I gotta say the obvious, “Your mother is phenomenal!” Your dad probably is as well, but I know more about your mom’s participation in your journey so that’s why I’m underscoring her awesomeness at the moment. I have high respect and praise for her. I hope lauren is well! Thank you for bringing your story full circle for us. I hope all the insanity and the hell that it was is in the past - forever! I’ll be forever grateful for you!
Aww you are such a gem! Thank you for saying that. I love my family. But my mom is DEFINITELY a special one. She deserves so much credit. Theres nothing I have gone through that she wasn’t right there for. Shes truly a rockstar. But my Dad is pretty darn special too 😉
Geez i am so sorry for you having to go through all of this! I have chronic pain and i cant imagine going through this! Im glad you are doing so much better though! I have been subbed to you for years and im glad you're so much happier and feeling better
I have kept up with you on instagram, but I wanted more, please don’t disappear from us again
I do NOT plan on it 😉
Look into legal action on your previous surgeon, he is infamous.
Hi Christina I have a question how do they externalize a shunt never seen one before I had one done but I never seen what happens
Well it’s kinda gnarly and it unfortunately is not something they can do and then just send you on your way. I had a lumbar drain so the tubing from my shunt came out of my back instead of into me and was being drained into an external device. But you have to stay very still and every like 30 mins it seemed they had to come in and measure it and make sure it was perfectly level with my position so I didn’t drain too much or too little. Then to move/change positions or go to the bathroom they clamp it off. So it’s not a fun thing! and they have to be SO careful it doesn’t get infected. Its very exciting when you get to have it go back inside lol
@@christinadoherty3212 Thanks for anwering my question by the way my name is Mike and I too have hydrocephalus
Christina I'm glad your here to tell us your story
Hi Christina my name is Mike and I found your channel a year ago cause I saw you have a shunt I do too I like learning about health related things
You are amazing and brave, and courageous and i continue to pray for what you need. You inspire me. Im 64 as nd i mean this from the bottom of my heart and soul.💗🙏👍💐can you share your nuero surgeon name and address?
❤❤❤❤❤❤❤❤❤❤❤❤❤❤ SO happy for you, Christina! Congratulations! ❤️🇨🇦
I’m so sorry your journey got so incredibly difficult. I wish I had words to truly express that sentiment. You’re a great KZread creator for our community. There’s so much value to what you are doing here on YT. I hope it ends up feeding your soul as well.
Tx for your great videos. Just sharing...what helps me...simple whole foods, meats, veggies and some fruit as tolerated along with no synthetic vitamins supplements or processed foods. I had to add in chicken liver small amounts thru the day. Ivwatch😢 Samantha lou rare resilience on FB and Dr Cynthia Li book, website and interviews. Very helpful in my research. Again just my sharing of what helped me if it helps others.🙏
So glad you’re back on KZread. You helped me so much 2017-2019.
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Thank you for this video and for sharing this hard part of your life. I always appreciate your insight and information
By the end of this video, I was in tears. I'm SO HAPPY that you finally got the answers you needed & the surgery that gave you your lease on life!! I've been following you since the beginning & you have been such a valuable resource... Not just for info on EDS, but someone who makes me feel less alone. I don't have quite as many complications as you, but my level of function is so impacted that I don't even feel like I belong in my peer group. I can't drive, I can't really work, I have difficulty attending social functions... There are some things I can do & some days are better than others, but i's hard to be in my 30s & feel like a child. Being along for the ride on your journey has been so validating. So... Maybe it's parasocial nonsense, maybe it's the parts of your story that I can relate to, but I'm so ELATED that you are recovering!! You deserve these wins so much. 💖 And congrats on the exercise & PT success! I've been in & out of PT & even tho it can hurt, I always feel much more mental clarity when I can get moving! And any improvement in physical strength helps us w/ EDS avoid deteriorating further.
I'm only a few minutes into the video, but wanted to say I'm always happy to see you pop up on my KZread feed. I've followed you here since at least 2017. (I remember watching your weekly vlogs while playing Breath of the Wild, because that game stressed me out a bit sometimes and I wanted the virtual company.) I've been keeping up with your Instagram in recent years, and just glad to hear how you're doing. I just have 'loose ligaments' with no specific further diagnosis and only mild problems, certainly by comparison. I like seeing how you still adapt things so you can do them! I have to do a bit of adapting here and there, and it reminds me that there's so many ways to do what I want to do! I also crochet a bit (I've been prioritizing other things; my hands and wrists give me the most trouble and I also like to play video games and do art) and it's been really fun to see you enjoy that too! I've also had a few mental breakdowns... wishing you the best with everything!
As a fellow EDSer with horrible spinal fusion pain this gives me hope! Thank you for sharing your very difficult journey with us. ❤
I just adore you! ❤
Thank you for sharing your journey. I'm glad you found hope. ❤ It gives me hope for some of the issues I deal with, too. Ehler's Danlos is such an interesting condition and medicine is always learning.