I don’t have EDS but I have had my spine fused from T1-S1 starting at age 10, for scoliosis. I’ve been unlocking and processing all the medical trauma. Love and light to you! By the way, I can totally relate to the family stuff.

hi, you don't know me but i just wanted to say: never give up. make the most of each and every day. say a little prayer of thanks that you had this day. no matter how painful. even if the only thing that you are, (which is NOT what i'm implying), but even if the only thing that you were was a lovely person, the world deserves to have that. the world needs you.

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I do have EDS but i also have another, actually really damn rare disease, that was diagnosed before my hEDS and it breaks my heart when the EDS community claims the zebra print exclusively for themselves. It belongs not only to the EDS community but also to the rare disease community! When a big community like the EDS community (for example hEDS is not rare so the community is pretty big compared to the rare disease community) claims this symbol exclusively for themselves it makes us invisible and that is not only dangerous but it also hurts a lot. So please don't do this.

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Hi Christina, I don't know if you checked your comments, but I really love your channel and your content and I hope you're doing well. Please make more videos if you can and if there's another place you make videos, please let me know so that I can follow you there. Again, I hope you're doing well and have a nice day😊

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I just wanted to thank u for sharing knowledge of eds w me. I owe u my life. I started watching you in 2018 or 2019. Without this diagnosis i was becoming so depressed being told nothing is wrong w me when i feel horrible every day. I just was at my eds clinic today for the first time (aftr a 2 year wait) and got a diagnosis and treatment plan and i truly couldn’t thank you more. I am so sorry that you feeling unwell benefited, me but i also couldnt ever express the amount of gratitude i have. And ik that if my pain helped someone it would make it hurt less bad for a second (emotionally at least). You are such an inspiration and i wish you all the best!💖💗💕🥰

I’ve been praying for you sis 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏😢

I had a feeding tube in my nose for about six weeks. Had a total laryngectomy. Thanks for the video.

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Hello, I use Google Translate to talk to you. My name is Ali, from the Arab country of Iraq. I subscribe to your channel. Beautiful video. I am honored to have you. You are a wonderful person.

Can you share your Neurosurgeon name?

Would it be possible for you to do a video about your cervical fusion?

Does her skin look white to you

You look gorgeous I like your style , I wish we could be friends! I can see you as my bestie ❤

5 years later how’s your body? This video made me worried about you! Please do comment asap

Hey Christina. As someone who has followed your story off and on over the past years, I'm happy to see the progress you've made with everything you've been through. I can't imagine some of the things you've had to overcome, but I've been there in many ways. I'm a young cancer patient/survivor. So, I've done surgeries, had the complications, etc. One thing you talked about, "the haze" of when you were not really living and just knew pain and medication...I really connected with that. I went through that exact haze you described. I had the surgery to remove my stomach so that the cancer was out of my body, and then I knew nothing but pain and medication for 3 years. Like you, I also was put on Palliative Care so they can just keep pumping me full of comfort meds. That whole 3 year block is a fog of indistinct suffering. I'm happy to not only be on the other side of that, but to see you come out of that yourself. I really wish you the best in your journey into getting better and more functional. You definitely have my support. Thanks for sharing your story.

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

😣! 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!

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 💜💜💜

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 😢

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 ❤