I am in tears at the amount of pain you must endure. You make me reevaluate myself and be ashamed when I complain, as my pain is currently manageable with meds. I am always amazed at your positive attitude and ability to draw strength from your faith in God. Please know my thoughts and prayers are with you and your surgeon that you will be able to tolerate surgery well, that your surgeon will be able to successfully find and fix what is causing you such pain and that you will have a good recovery so you have the next surgery as scheduled. Sending a virtual pain free hug.
Amy Giles what Elizabeth wrote is so true. I am on pain meds which help the base line pain we resently found out i have got a enlarged spleen and this is now causing me a lot pain even though I take pain meds this new acute pain isn't helped by my pain meds. Also you shouldn't dismiss your own pain as this is not a healthy way to look at it, the thing you need to remember is that there is so many different types of pain and strength that causes different types of pain and symptoms and your pain is as real as the next person pain it could just be that you are suffering from a different type or strength of pain. I learned this at a pain management course and they said that if you dismiss your pain it can cause more problems as you are sort of saying that I shouldn't be feeling this much pain cause this person has worse problems so they are in worse pain than me and this can cause a lot of problems with mental health issues and other health issues. I am not having a go or trying to put you down if fact I am trying to do the opposite and trying to say that yes you are in pain and this is ok to feel pain! Just next time try to think ok so I am in pain and some else is in pain but it might be a different type of pain from what I am feeling. If you get what I am trying to say. Please never put yourself down like that please. I hope that you can understand what I am trying to say and mean. Please just take care. Kelli
God bless everyone who understands your relief/excitement/hope. You used the word 'sentence' regarding your injury and my heart broke with understanding. Thanking God and your surgeons for moving you forward.
You are insanely strong and insanely patient and I insanely admire your complete faith in life and will to fight regardless of what it throws at you. You're such a support to so many people and I hope you always know that it is always reciprocated and that your faith in life spreads and is contagious and it's amazing- you're an incredible, incredible person.
I’ve been told I have a screw loose, too, but I won’t be needing any surgery for that🤪. Wishing you all the best with your surgery and a quick and easy recovery. Hugs.
Lois Cassels I keep getting told that to! But I just say well that screw that is lose is what makes me me and different from other people! Just a little joke I like to say!
Christina, we are lifting you up in prayer, sweetie...that the neck surgery will be small and a simple fix and then for the knee stabilization to work miracles for your mobility! Standing in the gap for you, praying and lifting you up before the Lord!🙏
Anyone Sept '20? Anyone else seen someone facing their pain with such elegance? I'm sure that off-camera Christina has her moments but omg she's always smiling and beautiful - it humbles me
I am so happy for you! I totally understand being happy for a surgery. I swore up and down that I wouldn't have another surgery before I was diagnosed with GHSD. Now I have a jaw surgery coming up, and I can't have it done until my neurosurgeon clears it. I'm waiting for him to get back from vacation to look at my upright imaging and call me with a plan. I'm also probably going to have to have my gallbladder removed. It's so hard to stay on top of all of the chronic illnesses and specialists. I'll be praying for you as go through all of this. You are so strong and amazing!
Hi Christina! I’m so very glad that they were able to get you in quickly! I’m a zebra mom with 2 teenage sons. My youngest son is also a zebra 😢. It is very very hard. I’m facing a future fusion myself. It’s a very long story but I’ve basically been in a “wait till something happens “ holding pattern because I live in Idaho and the neuro surgeon I saw has never had a EDS patient. In the meantime he told me my neck was so unstable and hypermobile and collapsing so rapidly that any impact could leave me a quadriplegic. I’m starting to be more symptomatic, which leaves me panicked because I don’t trust him to do my surgery, he was honest in saying he could do it but is aware of how complex a patient I am, and just seemed very tentative. When I had the original upright MRI my Gp’s exact words when. Seeing the result s were “this is the worst neck I’ve ever seen (mind the fact that he is also a geriatric doc 😳) and then he said “no one will touch you except for Dr Henderson in Maryland “. This is overwhelming since I already travel to California from Idaho to be able to see someone who knows about EDS. But now things are progressing and I’m scared. I don’t want to end up in a state of needing emergent care for my neck and have no one and end up with just anyone doing my fusion. Especially concerning after the recent death in our zebra community. I’m terrified and don’t know what to do.😫😭. I know your not in a state right now to be able to answer comments but some day if you are able, I would love to have a chat with you on a more personal level. I back watched all your videos and I am amazed by your strength, your faith in God, and your positivity!!! I will be praying for you this week as you face this surgery! Sending all my love, prayers and thoughts out to you sweetie! I really hope we can talk in the future! 🙏❤️🙏❤️🙏❤️
Christina, I wish there was a one-stop shop for all your surgery needs! That way you could get a volume discount, and have all your recoveries at the same time. :) In the future, there will hopefully be some dna therapy that will help our connective tissues be stronger. Aside from the fusing and stabilization surgeries, slowly and consistently building strength with physical therapy is probably the best preventative thing you can do for now (it's what I do, too). Sometimes, I think of the blob fish when thinking about EDS. Wouldn't it be nice if the air pressure around us could stabilize and hold us in our proper form, like the deep ocean water pressure holds the blob fish in its proper shape? I've seen the poor blob fish out of its element, and it looks like a serious connective tissue fail to me. I know you can relate to how that fish feels! Praying for great surgical results and quick healing for you, so you can enjoy the Spring! :D
I'm going on 20years with my full spinal fusion, without it I was given 6mos to live. at age 12yrs. So yeah, well needed. I've never regretted it, but I have occasionally missed being able to have a big stretch like a cat and feel those muscles etc stretch out. But a small price to pay for this much life. All the best to you and your journey, I will be thinking of you.
I’m so glad you found a team to take on your leg when it’s been such a struggle up to this point, even though surgery was not what you were expecting. Yay for the 70-80% chance! Boo for your neck, but it’s good to address the issue as soon as possible. Hearing about all the ways you’re struggling and your body in crisis is so scary; I’m glad this is uploaded at the end of the week so we know you’ve gotten through it. Your family’s adaptability is incredible, being able to drop everything to drive for an appointment, yes your sister had to cancel an appointment and is missing out on support, but unfortunately you’re in crisis so you’re the major priority right now. It’s so lovely that you have a second home when you need to be in that area and that they’re able to welcome you at a moments notice. Hey, your leg surgery is on my parents’ anniversary! Haha 😆. Ughhh, I hate having impressions done at the dentist, and mine didn’t have the digital option the last time I needed a TMJ splint. I wish you every bit of luck for your surgery, although this once sounds simple enough. ❤️
I'm sorry you need 2 surgery's but I'm glad they can hopefully fix it for you. I'm hoping you get your shoulder back again and can finish your room remodel and work on your shop. I always wanna come help you clean and pack and make you like an emergency go bag for issues like this week. My bf went to order me something and saw your shop was closed and was worried about you, it was so cute. It's crazy we have never met but your like family. I was waiting for this video making sure your are ok! So much love for you! (Ps the post card hunt is still going, he's in new York right now! Always welcomed in my town!)
Thats good news Dear Christina that they found reason and will do operation- will pray that all goes well! But thats bad that you in so much pain now, will pray for you.
Saw on your Instagram that you have a surgery date for your loose screw! So happy the surgeon is not leaving you in pain too long. Thumbs up to Trish for being a great advocate, to your mom for being your surgical Uber driver, and to you for being awesome! 👍🏼👍🏼👍🏼
I had knee surgery back in 2010, before I knew about EDS at all, much less that I had it, and even with no idea of the risks at the time, I have never ever regretted it because it was such a radical improvement in pain for me. It wasn't a fusion (though they may fuse one of my ankles eventualy) but a realignment. I hope both of your upcoming procedures go well. Your ability to take this stuff as it comes and keep going is honestly so astonishing and inspiring to me.
Words just can't describe how much I respect you. You are an amazing young lady. I'm 57 and lived a great life. I would trade places with you in a heart beat just so you should experience life pain free. I know you would be amazing and do great things given the opportunity to live pain free. you are an angel.😇 I must also say yiur mom is an amazing woman as well📿🕆 How do you do all that you do!
I love watching your video's!!! You're so strong and courageous and you always explain things so well. "it's nothing you did, your docs did..etc" I suffer from depression and you're one of only a few people that help me get out of bed on my hard days. hoping your surgery day went as smooth as possible. Everyone has " a screw loose" but only one in a million and say it literally.
I’ve had chronic pain for years that is still undiagnosed. I’m waiting to see a rheumatologist in March. 🤞🏻 While I hate thinking of anyone in as much pain as I have, there is comfort in knowing I am not alone. I’m praying you! ❤️
Good luck with your surgery I hope that it is easy to fix and sort out what is going on! I am always praying and keeping you in my thoughts and prayers. I also will be praying for the surgeon and your family. I hope you heal OK and sort of quickly after surgery( I say sort of quickly as eds always slows down healing time but we can always think positively about it. I am so happy that they are willing to do surgery on your leg to help stop that problem and i will be praying for you with that as well. I love your channel and how positive you are and how you try to spread it. I will be praying and keep you and your family in my thoughts and prayers. Anyway please take care and God bless you all lot's of love from me kelli xxxxxx
Oh wow, Christina you are one tough Zebra, I wish you all the best for your surgery. I am traveling 7 and a half hours to have my heart checked out next week. Something is attacking my heart muscle, and need to find out what. Anyway all the best with it.
That's amazing news that you finally got an answer!!!!!! I will be praying that it goes well and it all comes out as planned :) You are an amazing person don't ever forget!!!
Sending so much love and prayers that the surgery goes well and that you can hold on till it happens, I’ll be thinking of you all week and sending you healing vibes and prayers xxx
I am so glad that you have some answers and a plan in motion. Good luck with surgery tomorrow. I hope that it goes smoothly and relieves a lot of your current pain. Xoxo.
Sending prayers and positive thoughts!! I actually learned last week that I have spinal instability and need fusion surgery later this month. Your videos have made this whole process significantly less terrifying, so thank you so so much! I hope everything goes smoothly with your surgery and recovery. You are amazing 💙🦓
Thinking of you beautiful ❤ The EDS journey is a challenging one for sure.... I'm with you hun... I had my bladder removed recently.... Thanks EDS... Hopefully it will help. We are little warriors. 💪 Hoping the surgeries go as well as they possibly can. I love your videos & think you are such a precious positive person... all my love from NZ. Nicole xoxo
So sorry you are having all of this going on... But so glad there are some great solutions in place! Yehhhhh- so glad your long lost ring splint was found! I really look forward to the video on your complete spinal fusion, the ins and outs as to why it was necessary for you. I really appreciate you taking the time to do all of the extra videos! As always an encouraging video! And I'll be keeping you in my prayers for both of your upcoming surgerys - keep fighting girl and keep being that light!
Good luck this week! When performers get ready to hit the stage, we tell them "break a leg!", but, what can you tell a zebra with a loose screw??? 🤔 We really need to come up with something😉 Sending love and prayer💞
Good luck with your surgery.. remind him to have a Philips screwdriver handy. Every time I open something up it turns out to be the other kind of screw driver that I needed. 😜
I love your glasses! I have a similar pair! Good luck with both of the surgeries! EDS is always a fight, watching your videos definitely helps other EDS patients continue their own fight (like me).
If it’s any help, I’ve had my Mayo Neck plate for 19 years and the rod in my lumbar spine for 11 years. I’m also having neck surgery at some point this year xxxxxx
EDS in a nutshell - not knowing if it's better to treat it or leave it. So, so sorry you've been having such a difficult time with all of this (And I know it's going to get worse)
I hope you haven't had feel the screw itself while it's been loose... or worse, hear it rubbing up against something. I don't even want to think about how creepy and scary that would be... I remember being completely and totally freaked out when I first realized that I could feel the heads of the countersunk titanium screws after I'd had orthognathic surgery to move my upper jaw forward and my lower jaw back.
if its ok to ask, was/is your knee brace custom built or was it a prefab one? i need the same kind (with a ROM hinge) also for EDS related problems, but ive had an absolute nightmare trying to figure out which ones would work or are worth the money. TIA for any advice you can give. good luck with all your surgeries and stuff, i know it sucks like hell.
allie grimmer that’s unnecessary. She has a genetic condition that causes a lot of pain and problems. She has braces and a feeding tube and such to help her live her best possible life. They are the tools that she uses so she can be safe and in less pain.
I am in tears at the amount of pain you must endure. You make me reevaluate myself and be ashamed when I complain, as my pain is currently manageable with meds. I am always amazed at your positive attitude and ability to draw strength from your faith in God. Please know my thoughts and prayers are with you and your surgeon that you will be able to tolerate surgery well, that your surgeon will be able to successfully find and fix what is causing you such pain and that you will have a good recovery so you have the next surgery as scheduled. Sending a virtual pain free hug.
Amy Giles what Elizabeth wrote is so true. I am on pain meds which help the base line pain we resently found out i have got a enlarged spleen and this is now causing me a lot pain even though I take pain meds this new acute pain isn't helped by my pain meds. Also you shouldn't dismiss your own pain as this is not a healthy way to look at it, the thing you need to remember is that there is so many different types of pain and strength that causes different types of pain and symptoms and your pain is as real as the next person pain it could just be that you are suffering from a different type or strength of pain. I learned this at a pain management course and they said that if you dismiss your pain it can cause more problems as you are sort of saying that I shouldn't be feeling this much pain cause this person has worse problems so they are in worse pain than me and this can cause a lot of problems with mental health issues and other health issues. I am not having a go or trying to put you down if fact I am trying to do the opposite and trying to say that yes you are in pain and this is ok to feel pain! Just next time try to think ok so I am in pain and some else is in pain but it might be a different type of pain from what I am feeling. If you get what I am trying to say. Please never put yourself down like that please. I hope that you can understand what I am trying to say and mean. Please just take care. Kelli
In my top five of my favorite UA-camrs. I am a Christian and I believe God will take care of you. You are the strongest person I have ever known'
God bless everyone who understands your relief/excitement/hope. You used the word 'sentence' regarding your injury and my heart broke with understanding. Thanking God and your surgeons for moving you forward.
You are insanely strong and insanely patient and I insanely admire your complete faith in life and will to fight regardless of what it throws at you. You're such a support to so many people and I hope you always know that it is always reciprocated and that your faith in life spreads and is contagious and it's amazing- you're an incredible, incredible person.
missgirlah and
Wendy Martindale-Bergene yeh i may have got carried away ~and~
So now it’s Monday the 5th. You are really getting ready to head into surgery. Get it girl.
I’ve been told I have a screw loose, too, but I won’t be needing any surgery for that🤪. Wishing you all the best with your surgery and a quick and easy recovery. Hugs.
Lois Cassels I keep getting told that to! But I just say well that screw that is lose is what makes me me and different from other people! Just a little joke I like to say!
Christina, we are lifting you up in prayer, sweetie...that the neck surgery will be small and a simple fix and then for the knee stabilization to work miracles for your mobility! Standing in the gap for you, praying and lifting you up before the Lord!🙏
Anyone Sept '20? Anyone else seen someone facing their pain with such elegance? I'm sure that off-camera Christina has her moments but omg she's always smiling and beautiful - it humbles me
I am so happy for you! I totally understand being happy for a surgery. I swore up and down that I wouldn't have another surgery before I was diagnosed with GHSD. Now I have a jaw surgery coming up, and I can't have it done until my neurosurgeon clears it. I'm waiting for him to get back from vacation to look at my upright imaging and call me with a plan. I'm also probably going to have to have my gallbladder removed. It's so hard to stay on top of all of the chronic illnesses and specialists.
I'll be praying for you as go through all of this. You are so strong and amazing!
Hi Christina! I’m so very glad that they were able to get you in quickly! I’m a zebra mom with 2 teenage sons. My youngest son is also a zebra 😢. It is very very hard. I’m facing a future fusion myself. It’s a very long story but I’ve basically been in a “wait till something happens “ holding pattern because I live in Idaho and the neuro surgeon I saw has never had a EDS patient. In the meantime he told me my neck was so unstable and hypermobile and collapsing so rapidly that any impact could leave me a quadriplegic. I’m starting to be more symptomatic, which leaves me panicked because I don’t trust him to do my surgery, he was honest in saying he could do it but is aware of how complex a patient I am, and just seemed very tentative. When I had the original upright MRI my Gp’s exact words when. Seeing the result s were “this is the worst neck I’ve ever seen (mind the fact that he is also a geriatric doc 😳) and then he said “no one will touch you except for Dr Henderson in Maryland “. This is overwhelming since I already travel to California from Idaho to be able to see someone who knows about EDS. But now things are progressing and I’m scared. I don’t want to end up in a state of needing emergent care for my neck and have no one and end up with just anyone doing my fusion. Especially concerning after the recent death in our zebra community. I’m terrified and don’t know what to do.😫😭. I know your not in a state right now to be able to answer comments but some day if you are able, I would love to have a chat with you on a more personal level. I back watched all your videos and I am amazed by your strength, your faith in God, and your positivity!!! I will be praying for you this week as you face this surgery! Sending all my love, prayers and thoughts out to you sweetie! I really hope we can talk in the future! 🙏❤️🙏❤️🙏❤️
Christina,
I wish there was a one-stop shop for all your surgery needs! That way you could get a volume discount, and have all your recoveries at the same time. :)
In the future, there will hopefully be some dna therapy that will help our connective tissues be stronger. Aside from the fusing and stabilization surgeries, slowly and consistently building strength with physical therapy is probably the best preventative thing you can do for now (it's what I do, too).
Sometimes, I think of the blob fish when thinking about EDS. Wouldn't it be nice if the air pressure around us could stabilize and hold us in our proper form, like the deep ocean water pressure holds the blob fish in its proper shape? I've seen the poor blob fish out of its element, and it looks like a serious connective tissue fail to me. I know you can relate to how that fish feels!
Praying for great surgical results and quick healing for you, so you can enjoy the Spring! :D
I'm going on 20years with my full spinal fusion, without it I was given 6mos to live. at age 12yrs. So yeah, well needed. I've never regretted it, but I have occasionally missed being able to have a big stretch like a cat and feel those muscles etc stretch out. But a small price to pay for this much life.
All the best to you and your journey, I will be thinking of you.
I’m so glad you found a team to take on your leg when it’s been such a struggle up to this point, even though surgery was not what you were expecting. Yay for the 70-80% chance! Boo for your neck, but it’s good to address the issue as soon as possible. Hearing about all the ways you’re struggling and your body in crisis is so scary; I’m glad this is uploaded at the end of the week so we know you’ve gotten through it. Your family’s adaptability is incredible, being able to drop everything to drive for an appointment, yes your sister had to cancel an appointment and is missing out on support, but unfortunately you’re in crisis so you’re the major priority right now. It’s so lovely that you have a second home when you need to be in that area and that they’re able to welcome you at a moments notice. Hey, your leg surgery is on my parents’ anniversary! Haha 😆. Ughhh, I hate having impressions done at the dentist, and mine didn’t have the digital option the last time I needed a TMJ splint.
I wish you every bit of luck for your surgery, although this once sounds simple enough. ❤️
Very best of luck for surgery for Wednesday, lots of gentle zebra hug & love from across the pond xxxxx
I'm sorry you need 2 surgery's but I'm glad they can hopefully fix it for you. I'm hoping you get your shoulder back again and can finish your room remodel and work on your shop. I always wanna come help you clean and pack and make you like an emergency go bag for issues like this week. My bf went to order me something and saw your shop was closed and was worried about you, it was so cute. It's crazy we have never met but your like family. I was waiting for this video making sure your are ok! So much love for you! (Ps the post card hunt is still going, he's in new York right now! Always welcomed in my town!)
Thats good news Dear Christina that they found reason and will do operation- will pray that all goes well! But thats bad that you in so much pain now, will pray for you.
Saw on your Instagram that you have a surgery date for your loose screw! So happy the surgeon is not leaving you in pain too long. Thumbs up to Trish for being a great advocate, to your mom for being your surgical Uber driver, and to you for being awesome! 👍🏼👍🏼👍🏼
I'm so happy you have your surgeries scheduled...good luck and speedy recovery!
Good luck with your surgeries!
I hope your surgery has gone well and you have an easy recovery. Sending prayers
I can't even begin to imagine the amount of pain you endure. You are such a fighter. I wish you the best of luck on your surgeries!
I had knee surgery back in 2010, before I knew about EDS at all, much less that I had it, and even with no idea of the risks at the time, I have never ever regretted it because it was such a radical improvement in pain for me. It wasn't a fusion (though they may fuse one of my ankles eventualy) but a realignment. I hope both of your upcoming procedures go well. Your ability to take this stuff as it comes and keep going is honestly so astonishing and inspiring to me.
So relieved you now have a plan. My heart goes out to you and your family during this next journey. Peace be with you.
Best of luck today for your surgery. Wishing you a speedy recovery so you will be ready for your knee surgery.
You've got this! Cheering for you
Good luck Christina! 💕
Words just can't describe how much I respect you. You are an amazing young lady. I'm 57 and lived a great life. I would trade places with you in a heart beat just so you should experience life pain free. I know you would be amazing and do great things given the opportunity to live pain free. you are an angel.😇
I must also say yiur mom is an amazing woman as well📿🕆
How do you do all that you do!
❤️ Gentle hugs coming to you from here in the UK.
Good luck with your surgery! I hope everything goes well and your recovery isn't too bad! 💕
I love watching your video's!!! You're so strong and courageous and you always explain things so well. "it's nothing you did, your docs did..etc" I suffer from depression and you're one of only a few people that help me get out of bed on my hard days. hoping your surgery day went as smooth as possible. Everyone has " a screw loose" but only one in a million and say it literally.
I wish you peace and calm as you prepare for your surgery, and for god to be with the surgeon and the surgical team. You will get through this!
Christina, I will be praying for a successful surgery that will end your pain!! Keep us posted on how you are doing!
Praying for things to workout for the best
I’ve had chronic pain for years that is still undiagnosed. I’m waiting to see a rheumatologist in March. 🤞🏻
While I hate thinking of anyone in as much pain as I have, there is comfort in knowing I am not alone.
I’m praying you! ❤️
Good luck with your surgery I hope that it is easy to fix and sort out what is going on! I am always praying and keeping you in my thoughts and prayers. I also will be praying for the surgeon and your family. I hope you heal OK and sort of quickly after surgery( I say sort of quickly as eds always slows down healing time but we can always think positively about it. I am so happy that they are willing to do surgery on your leg to help stop that problem and i will be praying for you with that as well. I love your channel and how positive you are and how you try to spread it. I will be praying and keep you and your family in my thoughts and prayers. Anyway please take care and God bless you all lot's of love from me kelli xxxxxx
My heart is really going out to you. I know what its like to be in pain from multiple different medical issues. Sending you prayers and hugs
Oh wow, Christina you are one tough Zebra, I wish you all the best for your surgery. I am traveling 7 and a half hours to have my heart checked out next week. Something is attacking my heart muscle, and need to find out what. Anyway all the best with it.
That's amazing news that you finally got an answer!!!!!! I will be praying that it goes well and it all comes out as planned :) You are an amazing person don't ever forget!!!
Sending so much love and prayers that the surgery goes well and that you can hold on till it happens, I’ll be thinking of you all week and sending you healing vibes and prayers xxx
I am so glad that you have some answers and a plan in motion. Good luck with surgery tomorrow. I hope that it goes smoothly and relieves a lot of your current pain. Xoxo.
I’m a zebra with twin 7 year old boys. I’m 8 week’s post op from back and shoulder surgery. It’s super super tough with kids.
This is the video that brought you to me!
Sending prayers and positive thoughts!! I actually learned last week that I have spinal instability and need fusion surgery later this month. Your videos have made this whole process significantly less terrifying, so thank you so so much! I hope everything goes smoothly with your surgery and recovery. You are amazing 💙🦓
Thinking of you beautiful ❤ The EDS journey is a challenging one for sure.... I'm with you hun... I had my bladder removed recently.... Thanks EDS... Hopefully it will help. We are little warriors. 💪
Hoping the surgeries go as well as they possibly can. I love your videos & think you are such a precious positive person... all my love from NZ. Nicole xoxo
I'm so excited that you finally have a concrete answer on your knee/leg!!
So sorry you are having all of this going on... But so glad there are some great solutions in place! Yehhhhh- so glad your long lost ring splint was found! I really look forward to the video on your complete spinal fusion, the ins and outs as to why it was necessary for you. I really appreciate you taking the time to do all of the extra videos! As always an encouraging video! And I'll be keeping you in my prayers for both of your upcoming surgerys - keep fighting girl and keep being that light!
Ahhhh yay the ring splint!!!
Always warrior Christina 💜 You know we will always root for you and wish for your surgery to go great
Good luck this week! When performers get ready to hit the stage, we tell them "break a leg!", but, what can you tell a zebra with a loose screw??? 🤔
We really need to come up with something😉 Sending love and prayer💞
Chronic Butterfly Well, I’ve got a 3am thought for the night now lol #🦓life
Good luck with your surgery.. remind him to have a Philips screwdriver handy. Every time I open something up it turns out to be the other kind of screw driver that I needed. 😜
Good luck dear
Glad to hear you're finally getting some answers. Praying everything goes smoothly ♡♡♡♡
I love your glasses! I have a similar pair! Good luck with both of the surgeries! EDS is always a fight, watching your videos definitely helps other EDS patients continue their own fight (like me).
I hope all goes good with the surgery and hope you feel better
Sending prayers to you! I hope your surgeries go well and that you have a smooth and fast recovery
I hope the pre-ops have gone well and I’ll be praying for you on Wednesday cariad xxxxxx
If it’s any help, I’ve had my Mayo Neck plate for 19 years and the rod in my lumbar spine for 11 years. I’m also having neck surgery at some point this year xxxxxx
Sending lots of love and prayers your way ❤
Love you so much Christina ❤️❤️❤️❤️❤️
You’ve got this girl. You are one of the strongest people I have literally never met! 😉
Tramadol is the only thing that works for me also. I use regular and extended release. Hope you feel better soon!!
I feel for you, I wish there was more they could do for you💗❤️
Big hugs xxx
EDS in a nutshell - not knowing if it's better to treat it or leave it.
So, so sorry you've been having such a difficult time with all of this (And I know it's going to get worse)
Oh Cristina cariad! Why can’t they all work together for you?? Hoping your feeling better today, my lovely friend xxxxx
I love watching your videos while doing my chores, so I love when you post longer videos! Also, why can't you take a flight to Maryland?
Yeah to answers, boo to two new surgeries you have to endure!!
I hope you haven't had feel the screw itself while it's been loose... or worse, hear it rubbing up against something. I don't even want to think about how creepy and scary that would be... I remember being completely and totally freaked out when I first realized that I could feel the heads of the countersunk titanium screws after I'd had orthognathic surgery to move my upper jaw forward and my lower jaw back.
girl dont worry i have same issue.....so dont worry give mi hi 5
Personal elephant supplier 🤣
Kerry Sheehan
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if its ok to ask, was/is your knee brace custom built or was it a prefab one? i need the same kind (with a ROM hinge) also for EDS related problems, but ive had an absolute nightmare trying to figure out which ones would work or are worth the money. TIA for any advice you can give.
good luck with all your surgeries and stuff, i know it sucks like hell.
Gina Cook here. Note if you ever need to talk I'm just a PM away.
Get ur back fixed the way you were born with
allie grimmer that’s unnecessary. She has a genetic condition that causes a lot of pain and problems. She has braces and a feeding tube and such to help her live her best possible life. They are the tools that she uses so she can be safe and in less pain.
Get rid of the feeding tube and eat but mouth like a normal person
GET YOUR SPINE FIXED BACK THE WAY YOU WERE BORN WITH
Get rid of all your braces