I Lost 3 Months of Memory + Had to Relearn to Walk - My Time in the Brain Injury Unit | Storytime
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- เผยแพร่เมื่อ 13 มี.ค. 2018
- This is a fairly different style to the videos I usually film. This is really the first time I have just sat down and told you a little bit of my personal past. I hope this helped you to get to know me a bit more and I hope it inspires you if you are feeling you are at rock bottom. EDS doesn't have to be progressive, it often goes up and down, andI hope this video helped to show that. I am so grateful to be where I am now vs. where I was then. There is hope out there!
Do you guys like this style of video? Let me know. I have a lot of stories to tell!
(And yes that stray piece of hair is driving me nuts too!)
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you are such a brave person. your story is so inspiring you need to be in a tedtalk.
I never miss a video of yours. it reminds me of the blessings that I have and encourages me to work harder.
I live in Saudi Arabia I never heard of EDS before, thank you for sharing your story on youtube it allows me to be more aware of it.
p.s you have a beautiful smile and good luck with your next surgery may God be with you
Oh my God you’re some kind of different breed of human. People quit so fast at the first sign of adversity. I don’t know if people understand drug withdrawal. Even getting out of bed with those symptoms is a feat.. let alone learning to walk and move again with such an unpredictable body.
Ive seen people including family go through drug withdrawal I gone through with my medication if I don't have it bc I've been on them so long that it's like a part of me and drug withdrawal is hell
I feel ya with not remembering parts of your life. I’m also missing time when I was ill. I’m so glad that you fallowed your faith. God works in ways we can’t imagine. You are certainly a beautiful image of that. Love story time, can’t wait for the next installment
It's amazing what we go through when determination sets in... even when our brain shuts us out, our subconscious knows what to do.
I'd really love to see more of this style!! You had mentioned bits and pieces of all of this in the past and it was kinda nice to hear more and understand just how you've gotten to where you are and what's shaped your health journey and ultimately you. Love and spoons.
Good video. Hard to watch you suffering in that old footage but so glad you are on the other side of that. You are one of my resilience role models. Just keep swimming! Or walking. Or trying to swallow. Whatever is going on, keep moving forward, even if it’s only mentally.
I couldn’t stop laughing when you said “guys, I was druuuuuuuuuuged” 😂😂😂🤪
Withdrawing from medication, especially heavy pain meds is no joke. You're definitely a warrior.
Thanks for sharing your story. I've always wondered about the earlier days. I would love to see more "story time" videos.
You are so inspirational! I am also 22 years old and seeing you being happy, smiling, living life even though you have so many conditions, makes me feel like I should never complain about anything. I feel so sad that you have to deal with all of that and I think nobody should ever face challenges like that but I know that this is not the point of your videos and I admire you for that.
I wish you a lot of strenght, faith, love and health!
Maybe I might tell my story some day. Your testimony today just might have helped me a ton.
Hi there! I just eat to say how much hope your story gives me. I have gastroparesis (mainly) not eds, but I live in pretty much chronic hopelessness. My body doesn't work, most doctors don't believe me, and my local er has directed me to stop coming. You showed me that there are so many steps I can still take, when I thought I was out if steps without surgical intervention. Thank you! I hope your day find you well.
I love this type of "story time" video, it would be great if you did more like it. Thanks for sharing!
I'm sorry for all the hard times you have had to go thru. But giving God glory for keeping you here and getting you thru. Thanks so much for sharing your testimony and life. You are an inspiration. I'll keep you in my prayers. God bless!
This brings me to tears....what you went through, what I've been dealing with, what others will encounter. It's hard! We each have a story, some are so much more rocky than others...your's being one of them.
SellyNue well said!
This had me choked up at some points. You are so resilient and I admire your tenacity so much.
You are an inspiration!! I have spinal stenosis and several herniated discs in my lumbar spin. I have experienced nerve pain and thought that was the worse pain one could experience. After watching your videos I am so thankful that this is all I have experienced, pain wise. We all complain about our troubles which are miniscule in the whole skeem of things but in every single video you are smiling. I applaud your outlook on life!!
Omg... you are such a warrior!!!
Wow! You're such an inspiration! This video is a masterpiece in giving us your background ❤ I wish you all happiness in the world!
What an inspiring story. Im sorry you have been through so much but i understand and can see from this story how much specific challenges and reaching out for intervention led you to that open door that made so much difference...It was like you were not suppose to do it the way it was and things switched to show you another hard but helpful lesson to build your ability to go through the next steps with much more experience and confidence. Maybe the memory loss was to protect you from all that would have just frightened you and kept you from trusting at that point. God is good. I think your family fought hard for you...and they are to be commended for getting you the help you needed and fighting for you....and the pts that im sure was part of their world watching you go through so much and feeling responsible and possibly very desperate for help....Im so happy you got your smile back and quite amazed at your ability to communicate under so much meds with such clarity of needing to reach out...your such a inteligent individual and such a good attitude. When i want to fuss and complain about less I think about what you go through and think if she can smile and have a good sense of humor with all shes going through I have nothing to complain about and do you an injustice if I gave up with such a small dose of chronic....I need to be thankful and use what ability I have while I have it and be thankful....and pray for many blessing for all youve been through and yet help others be encouraged...bless you girl!!!
I just found your channel! Thank you for posting about your experiences! I had to relearn how to walk after my last spinal surgery and it’s cool to see someone else’s journey.
Thank you so much for this explanation and information! I have been following you here on TH-cam pretty close to the beginning and there were a few things I guess missed or maybe were not aware of! So thank you - thank you for letting us into all of this and about you! Really appreciate you!
You are incredibly brave! Thank u for sharing
Thank you so much for sharing your experiences. I am starting my journey of getting treatment for severely progressive EDS, CCI, Chiari 1, spinal instability, tethered cord, gastro p, and a myriad of other comorbidities. You make me feel like I am not alone and you make me feel understood. Your videos a an absolute blessing to me. I'm scared and your strength makes me feel like I can be strong too
Thank you Christina. For another great video..
Love your vlogs, I had no idea that you've been through so much. Stay strong 💕
Love watching your vlogs. Ty for letting us peek into your life.
This was very enlightening Christina thank you for sharing, I hadn’t realized you have been through that much in your journey.
Thank you for sharing! I've been watching for a while, but it's interesting to understand the full background of how far you've come!!
Thank you for sharing. It was really interesting to hear more of your story
What an incredible story! You are so strong!!
I've been watching your vlogs for quite some time. My husband went to school with Rachael's mother and we've been praying for Rachael thru her journey with EDS. Thru Facebook I connected with you and have been praying for you daily. Thank you for sharing and helping people understand what EDS is. Your spirit is so beautiful I know God is using you in a powerful way!
+Cindy Smith Thank you so very much Cindy! Thank you for following my story 💗 And for praying for Rachael. Is is such a sweet and wonderful girl. I love her and Its so hard to watch her suffer so much with all of this. Shes one of my big inspirations to keep sharing my story to raise awareness
What a fascinating story, Christina! I can’t wait for the next chapter! xxxx
Another video were I could not hold back the tears. I love both. Vlogging and story time. Every time you pop in my head I say a prayer for you.
+Christopher Youse Thanks so much Christopher! 😊
I love story time ! Great idea! You are simply an amazing person. It is almost unbelievable how strong you are! From one EDSer to another much love my friend!
Thank you for sharing this story! It definitely helps make sense of your vlogs/situation now too.
And that rehab center sounds fun and useful, I wish I could do something like thatg as a grown up! I always say how these once a week-but only for like 10 sessions a year absurd situations so many insurances have us EDS patients in is SO not helpful compared to what an intensive program like this would be!
You nailed this video, Christina! 👍🏻
wow! I'm speechless! amazing story, and please share more!
love the story time, please continue
Your positivity and cheerfulness is amazing. Keep pushing through . You are awesome !
christina your are an amazing insperation , your strength and resiliance are extraordinary!!! i also lost alot of memory from epileptic seizures so i kinda understand !!! but i have so much respect and admeration for you , please keep pushing on god will be watching over u and sending you so much love in your time of need !!! bless you and gour family
Wow. You're strong Christina, and you are brave. Sharing your story with us helps to educate me, and no doubt so many others, who are on the EDS journey themselves, or in my case with my teen daughter. It was a hard video to watch, I can't imagine how hard that roughest time was for you or your family. I'm so glad you are recovering. It's been one heck of a journey. I sure wish we had a physio like Trish! Thank you for sharing ♡
You've come so far! What an intense journey. I heard you playing Think of Me on the piano. Phans for life.
You have such a positive energy ✨ you inspire me
God Bless, Christina! You've been through some scary times for someone so young. Stronger every day, girl! :D
You are amazing because you have been through so much trauma and pain and yet you seem so resilient. You keep bouncing back through hard work in physical therapy and so many surgeries. You inspire me with your story. I hope the best for you you deserve it!
You are so brave, you had to go through so much and I am angry about such silly things in life and you are so positive, you are beautiful, don't let people bring you down, Go Christina (sorry for my english)
I love watching your videos and I always talk about you to everyone that I’m close to that knows I have Eds. My friend and I are also talking together about you. I have EDS and my friend has mast cell and EDS. Your videos give us someone else that we can listen to and feel like we are finally understood about our problems. Your videos help so much. Thank you for just being you ❤️❤️❤️
Thank you for sharing. You are definitely a brave chronic illness warrior. You’ve come a long way. Sending hugs from Oregon
I am so so so incredibly impressed by your strength, little Lady!
Wow, girlie!!! What a great vlog that was! Loved hearing all the details of that part of your journey. We have five children (four girls, one boy), and they’re all involved with music one way or another...our second oldest is going to school for a music education degree. Amazing that music was the biggest influence for you! xoxo
Thank you Christina.
Thank you for sharing, it must have been so hard but I'm glad you made it to the other side. I've had a similar experience and now I'm a lot better, but it's still hard to look back on. Like you I lost a chunk of my memory and it's frustrating for me, because I can not remember my best friends last days before he died, it's a struggle everyday but you inspire me so much and I really look up to you. Thank you so much, you are a light in this world and in my life
Well aren't you a gem 😍 ! So inspiring for some of us with chronic diseases and a whole lot of stories too . Thank you for Story time , I watched the whole thing , it was one blessing to another . An uplifting journey , your a very good story teller with one great attitude 😚 ! ~ M.S. survivor 30 years !
keep up the positive mental attitude. you have more burdens to bare than one so young should have. good luck and may the good lord be with you. and thank you for the all the hard work you do for the video's. I have many more to watch to get caught up on your progress and unfortunately your setbacks as well. I think that which does not kill us makes us stronger. I will try to send you positive thoughts and prayers. I myself had to learn to walk again and have had major spinal surgery. but no were what you have had to suffer. God speed young lady and blessing for your parents. I see you have been blessed with a great mother. I look forward to watching you get better.....
Thank you for this video - my goodness, I will never complain again (well, I will at least try complain a lot less) about my issues starting right now. You're strength, and resolve is inspiring.
As I am sitting here, I am in the midst of getting my daughter ready to be diagnosed what we think is POTS. She most likely also has EDS, and yesterday had a severe reaction to a dentist appointment (loss of hearing, and her throat swollen, to the point she could not swallow water), so her random allergic reactions made me think of you - she has been allergic to stuff since she was a baby, starting with diapers of all things. But compared to what you have been through, she is doing well, so I will keep that in mind, every time we get frustrated with something that is going on. Thank you for that. She has also slight swallowing issues, especially with medicine, as do I. Thankfully we never have been given issues with getting anything given to us in liquid form.
Also, I just figured out that my Great-Grandmother and my Grandmother were diagnosed with what was called "Connective Tissue Weakness" by the doctors in Germany then. I have some of their same symptoms, so the leap to EDS is not a big one, especially since POTS (which I have a mild form off) is so closely intertwined with EDS.
Sorry for ranting. I am grateful for you, and for your openness. You are only slightly older than my daughter. I wish you all of the best!
Wow this is very eye opening. Didn't realize just how extensive your medical journey has been. The video clips from your recovery and rehab are hard to watch but you are a role model. But on a different note i plan on going into the art therapy field so its nice to know patients appreciate it.
Thank you so much for investing your time and energy into making this video. I'm going through some of the things you went through. I'm experiencing rapid deterioration from worsening neuromuscular symptoms. I'm losing my ability to walk very quickly. My proprioception and balance are terrible (I have ataxia-like symptoms). I walk with my arms splayed out to keep my balance, and I often misstep. I can't walk a tandem gait without flailing dramatically. My muscles fatigue quickly and severely. The muscles around my knees are too weak to support them, so my knees buckle as I walk. I experienced dystonia-like symptoms for the first time after a very severe episode of muscle weakness. It was very scary. I've had to borrow a wheelchair from my university because I can't get to class without it, but my arms are too weak to push it, and the straining triggers POTS symptoms.
There wasn't a moment in which I wasn't glued to the screen, eagerly waiting for the next twist and hoping for it to be for the better! The story of this part of your life is truly captivating! It also helped give some contrast, helping to explain your engagement and over all predominantly positive attitude towards life. Thank you for sharing this!
+karoscgot Thank you! And thank you for watching 💗
Wow not sure what to say, your poor family and you had to endure to much, I can only say praise the lord you are still here. Hugs xxx
ive watched your vids seen you go through so much but the clips when the drugs hit all at once and you saying can feel them stuck then your out of it made me cry because you always seem so strong and to see how scared you was is heartbreaking to watch christina you are one beautiful amazing and strong young woman as a mother i know your mum and family must feel the same as i xxxxxxxxxxxxxxx
+Lisaa Aww Lisa, thank you! Sorry to make you cry. Without the hard times I never would have been the person I am now 💜
I have been seeing your videos for a while now but never commented on them... but after this video, all I wanted to do was give you a big hug and tell you how amazingly brave you are :-) lots of love from France (and I love your vlogs but this type of video is really educational, so I would like to see more definitely !)
+Maelle Francou Awww well thank you for commenting! Love back from the US! 😘
I am so proud of you! When you are in those scary places where it feels like nothing is going to happen, God really does comes through. I’ve learned so much from you. You’re so brave, strong, and determined. Looking forward to part 2!
Christina, WOW....Thank you for sharing this, I now understand so much more. Girl, you have been through some rough storms! Bless your 💓. I have to say, I thought I had some struggles with the in and out of hospital, etc etc...Well, it's apples and oranges I sapose. Different situations. I'm so very glad your still with us, the pain meds that was building up in your system, OH MY! Thank you Jesus for holding Christina in these very difficult times, and thank you for all you do..Amen
Christina, I will keep you in my prayers, think of you often and hope sooner then later you can be pain free!!! What a strong woman you are, and honestly you are probably the strongest I know!
Much love and hugs your way
Peace~
I am having many the symptoms you described early in the video, muscle twitches and pretty violent jerks on my left side. Thank you for making this video because I genuinely thought that these were normal symptoms of getting older. I’m seeing my doctor next month :) thank you so much for educating me
What an incredible story! Thank you for sharing!
+Laura Gud Thank YOU for watching! 😊
I very much enjoyed this video, and all the little picture and video add-ins really helped enhance the story! And wooww, you are so strong Christina and we are all very proud of u for what u have overcome! EDS CAN’T STOP U! 💪
+Celiac Zebra Thank you! Im glad you liked this style 😊 💪💪💪
This was a very interesting video into your illness and life. I'm truly sorry you have experienced so much pain and I'm glad that you're doing better :)
+Karla4478 Thanks so much Karla! 💕
Prayers, girl. Hugs from MN! I've been where you were! (Surgery/drugged up)
I admire you so much. You are very brave. I wish you all the best & that you improve to your maximum potential!
+Laura Todd Thanks a ton Laura! 💕 That means a lot!
I really like this style of video. Thank you for your stunning vulnerability! I was really moved by how long you've been fighting your fight and living so bravely
+Happy Little Raisin Oh good! Im glad you like it. Thank you for watching and following along on my journey!
I hope you make more story time videos! 💕
This video is so similar to my experiences in so many ways, but also so interesting as kind of different. I spent a huge amounts of time inpatient & used a walking machine like that called a ‘lite gait’ & felt like I was a space walker. The arm machines and leg machines too. I also did the brownies and wii games too 😂😂 You’re one tough girl and I’m loving your vlogs. Hope you’re doing okay as can be!
OMG I LOVE YOUR STORY! AND YES FOR BEING A BAND GEEK! :-D fellow band geek zebra here ;)
And you have definately been through a heck of a lot.... I have a couple friends who have been through similar (it's really amazing, actually, I reconnected with 2 friends, one I've known all through elementary - high school, the other was a fellow band geek in high school, and we fell out of touch and reconnected, and neither of them know each other, and I'm glad I reconnected via Facebook with both of them, they have both been through so much from EDS, one of them was in a coma apparently and lost 3 months and had to learn how to read and write and walk and everything again, I wasn't in touch with her at the time, whatever algorithm Facebook uses just never showed me her stuff, but yeah... Small world sometimes! I'm not local to either of them, but it's nice to know I'm not alone, and one of them suggested the aspen Vista and that's been a lifesaver lately... Golly gravity is heavy, haha... Being upright is hard! ;) but my doctor doesn't know what's up with me, upright cervical mri showed some things but not instability, which was honestly... Really a bummer, as odd as that sounds... I feel it being unstable and I turn my head and some of the time it kinda freaks me out the way my neck /head jolts, it tends to feel better usually after it does that, or if not, then it will jolt and crack around again, and I'll feel so much better for a bit... I don't know if I clinically have cervical instability, since it seems I don't, but I can relate to just *knowing* the part of your spine that's causing issues, and the pain shocks, and just... I feel like I know what's wrong, and I feel better believing I have some idea than being clueless, that's even scarier...
I got rambling, sorry... Whatever I was saying though I forgot lol... You're amazing though!
Thank you for sharing, I find it insightful, plus it's nice getting to know more about you.
+loopysos Thank you for watching! 😊
OMG! What a story! You have been thru the ringer, truly. You r so strong and have come so far. It's a miracle, really. Thanks for sharing ur struggles with us. I wish u better health in the future.
Wow all that footage was very upsetting to watch 😢 you're so lucky you didn't overdose! So scary.
You excuse joy and happiness despite your physical problems. Quite the inspiration! I have EDS as well and watch you to see what it looks like to be gracious despite how miserable you're feeling. I'm struggling with losing my work identity. I'm trying to find the positivity of the situation. You've helped spur me on. So thank you! I wish you all the health and happiness you can achieve. Xoxoxoxo
excuse or exude :-)
AffordBindEquipment ...oh, exude, thanks! Didn't proof. Lol
+samiamisme Thats okay, I knew what you meant! 😂 And thank you. Im sorry to hear about your situation. I hope you are able to move on and enjoy this new chapter of your life 💗
I
I had a lumbar drain when I had my most recent brain surgery (my third) this past August and the most painful thing I can remember in my life was being awake to get the stitches in my back. Because of my brain “issue” I have had upwards of maybe 100 MRIs since I was in first grade (I’m in seventh currently). The goals from my occupational therapist were to walk around and I did but I felt so nauseous. I am amazed that you powered through all that stuff that has happened to you.
Hi beautiful, thank you so much for sharing your story...There were definitely things I didn't know about you that you highlighted...It was very tough seeing you struggling to talk when the medicines were being absorbed incorrectly, what a hideous thing that must have been! Thankgoodness you finally figured out the swallowing issues. What a massive few years. You are a beautiful, remarkable, strong & resilient young woman. I truly get alot of what has happened to you... EDS just keeps on giving doesn't it 😪
I'm recovering from bladder removal surgery thanks to EDS & dysautonomia... We keep on keeping on don't we.
Big hugs to you. Love Nicole from NZ xoxo
+MsFunky1973 Thank you! And hang in there! Bladder removal must be a pretty difficult recovery mentally and physically 💕💪
I think I should share my story of something similar on my channel. I was older when I lost probably more than 3 months of my memory and lived in hospitals and a children's rehab center for acute and sub-acute problems for a long time. I want to do a testimonial for them so I know I'll at least do that. They gave me my life back. I wouldn't be here today without the help we had back then. There are so many important things that happened that I don't remember anything from. =/ i am so sorry you had to go through this. I would never ever ever wish what i went through, or even Half that, on anyone else. I am praying for you daily!! 💞
This was very enlightening for me Christina. So many things you mentioned I have experience of but had no idea they had to do with EDS. I am going to have to rewatch it and take notes for my Neurology consult next week. I wanted to stop and take notes but didn't want to hault the progression of the
story. You have been through so much, I think you don't give yourself credit for still being sane, alive, to have kept trying so hard and being so amazingly and astonishingly positive after all of that. Don't question that these types of video's are valuable for people that know they are Zebra's
and those that might still be searching. Oh and that even for people that have great uncomplicated health, I think educating them helps all of us. I know I hear all the time that not only Dr's don't understand us, but loved ones and friends too so this does good for lots of different people in one
foul swoop. Please continue to do these, more specific video's for your Zebra friends sake. I wouldn't mind if they got even more specific because there is so much to cover, and the intricacies of this disease can go on for ever. oh by the way, I now realise why you are addicted to seeing Trish. It
sounds like she does for you what my Chiro/Kino does for me. I love how she goes into bat for you communicating with your Dr's and surgions best of all.
Wow! I'm sitting here scared of my upcoming jaw surgery and removal of Eagle's Syndrome. This totally puts my worries into perspective. You are an amazing and inspirational person!
Chronicles of a Broken Person Wishing you the best in your surgery.
im currently in a nursing home for rehab after having ,y right lower leg amputated. This will be the third time i've had to relearn to walk due to severe sepsis issues where both times I wasn't;t expected to survive. The trouble is my body is rebelling. It is a daily struggle and i try my best every day. i look up to you cause you have moxie and a joie de vivre i wish i had
Im glad im not the only eds sith progressin at an alarming rate.thanks for inspiring me. Def understand more stable but always a set bacl and weather affects it to.
+nicki p It can be pretty scary when things go downhill so fast. Unfortunately I have a pattern of that. But the best news is that a lot of my symptoms were able to be reversed with the proper treatment/surgery. There is always hope! Hang in there Nicki! 💗
I just want to say that you have a true testimony to what God can do!!! Thanks for friending me on facebook. You give me hope and inspiration. I'm so glad you shared this with us.
+Ebony Marie Of course! Only good can come from putting your story out there 💜 Awareness is the first step towards proper diagnosis and treatment
PLEASE PLEASE PLEASE. Make more
Omgosh, Christina, I have sooo many (almost every one) of the same symptoms as you described from before your memory loss, but after, too, but NO hypermobility of joints, so it cannot be EDS, right? Any advice appreciated regarding a diagnosis, as they havent gotten it right, yet. They just diagnosed me with something called restrictive lung disease, a horrible, progressive disease with no cure. I very well might have that, but it only explains some of my symptoms. Anyway, enough about me. I am SOOOOOOO glad you got at least some of the treatment you needed...that God gave you that chance, that that door opened for you! 😊😊😊😊😊 you amaze me and inspire me to stay positive, so don't ever give up! God is always there and his timing is best, right? Bless you, hon. Thank you for sharing this, and I pray you'll have physical strength, emotional strength, fast healing, less (or no) pain, patience, understanding, and all the good things that you, as a child of God deserve (all the things I pray for for myself lol)! He loves us so much!
You can't have EDS without hypermobility but you can definitely have instability still :)
olivia hermansen Ty for clarifying! 👍
My joints and joint instability are a major component of my EDS. In November 2014 I got evaluated for an inpatient pain program at Cleveland Clinic, we had been trying to get me into inpatient rehab for months at that point. Originally they told me no because I was too sick for their program and my problems were too physically based for them and to be helpful . They said I definitely needed inpatient rehab though an they would try to find a program for me. A few weeks later they called back and said they could offer the same things. So in January 2015 I was admitted for the pain program with the promises it would be modified for me. When I came the inpatient team was shocked at how bad things were and admitted they took more then the program could handle. They typically use a standard program everyone does but with me because my joints are so bad I was doing a program completely different from the other kids. They sent me to see orthopedic specialists who told me at 15 I needed my shoulders fused. Which limits range of motion of my arms to max 90 degrees. The program was helpful for occupational therapy and learning to live around my joints and instabilities but it never actually addressed the issue. The fact was I was too sick for the program, they even considered keeping me a third week inpatient (typically they do two weeks inpatient and a week outpatient; from time to time keeping kids for another week outpatient but they had never done a third week inpatient before) and ultimately decided against it because they were not equipped to handle me.
Thank you for sharing your journey. We have many similar issues that were caused by different things. As I have watched some of your videos I am amazed to have found someone who has and is going through what I have been going through. My journey started with a car accident during the summer of my junior year of college. The car I was in was hit by a car going 45mph as we sat at a red light. The impact turned that heavy Volvo 180 degrees and sheared the bumper off. Because I was turned slightly towards the driver I got whiplash from side to side and front to back. At the hospital they only X-rayed my neck. So even though I was having symptoms of a spinal cord injury it went undetected for many years. I got treated incorrectly for various symptoms but no one looked for the underlying cause. The negligence of my primary doctor nearly cost me my life. If I hadn’t demanded that an MRI be done I would have either died or become a quadriplegic on a respirator within days. The Neuro surgeon I was sent to couldn’t believe I do the thing done during the evaluation by his assistant. She left to talk to him and he came in to redo the evaluation himself in less than a minute after she had left the room. He was puzzled how I was able to do it because just looking at the scan there should have been no way for me to be doing anything. After the surgery he said that the damage had been even worse than seen on the scan.
I look forward to seeing your next video. Hang in there.🤗
+Merilora Duncan Wow Merilora, Im so very sorry to hear about your accident and the gross incompetency of the ones who were in charge of taking care of you. Thank God it was finally found and you were able to advocate for your own care. Hope things are a bit better for you these days💜
Christina, Thank You so much for the advocacy work that you are doing for Our EDS zebra Community 🦓❤! You are making a huge contribution and education to other EDSers, caregivers ,nurses, rare disease researchers, geneticist and Physicians to the true effects, Pain and complications that can and do occur with EDS. I applaud you for your triumphant spirit and allowing a vulnerable look into your world, and I applaud your family who clearly love and stand by you so much!❤ 🦓 You are a true Cherished Hero to our community! Many Blessings and prayers for you!
The Insufferable Movement on Facebook
For others haveing some symptomatic issues with brain stem activity that are not at surgery level yet, I have been useing Savella to help control some of the uncontrollable leg nerve signal failures, body movements, falling/ collapse issues, involuntary shaking tremors, POTs issues, temperature regulation issues, headaches. It has helped me I feel , it's typically used for fibromyalgia but works on the brain stem so it may have off label uses for us with EDS, POTs, Chara cranial instability spinal instability. As a community I think it's important for us to share with each other what works and doesn't for a lot of times our doctors may be desperate to help us but don't quite know how because there isn't a lot of information due to the complex nature of EDS and it's comorbidities. I would Love to hear from ALL of you 🦓! What has worked, not worked at all, so we can work together and help educate each other and also the younger zebras new zebras that are coming in the desperately need an effective game plan to manage their symptoms. If anyone would like to share please find me at: The Insufferable Movement on Facebook and we can start a thread together! Much love and God Bless, Lindsay
More storytime please!
I loved this video soooo much. ♥️♥️♥️u
I totally get the memory loss, unfortunately. When I was in the hospital due to a blood infection last year, they gave me Ativan+Morphine IV and I lost most of my memory for about 5 days, and I’m not entirely mad about that...
Apparently my kidneys tried to shut down and I was in a lot of pain, then I got pneumonia and dystonia and all that fun stuff. Worst part is, I found out last week that my brother in law had to help me up just so I could puke violently all over the place 🙈 Not gonna lie, I am now thoroughly embarrassed especially considering I had been married for less than 2 weeks! Gah!
Anyways, so glad you recovered well, and thank you for making such a wonderful, informative video.
I just found your channel and you are so inspirational. I cannot imagine what you deal with on a daily basis. I do have one suggestion for this particular video and I really hope you don't take offense to it. As a recovering addict, the footage of you over drugged was somewhat of a trigger. It would be good if you put a warning that that's in this video. I wish you the best and I'll be praying for you. ❤
I was a band room geek, huge time😊. There was a group of us who spent our lunch hours sorting music in the band room. I played the clarinet, adored it. Happy memories.
+Lois Cassels Flute player here! 😊
Your Faith and Trust in God through all your pain and suffering is amazing!! You gave it to Jesus. God gives us more than we can handle, but not more than HE can handle. Together (you and God) can do anything. It all comes down to faith and trust...and you are faithful! Amen! God is so good! You are an inspiration. Thankyou! I'll keep praying for you.
Your witness to God's faithfulness to you shows on your face. I watched a lot of your vids before I got to this one and I just thought that there had to be a God connection somewhere in all that, to have the radiant smile in ALL your vids, to be so positive in the middle of all that suffering. God bless you in your future. Thanks for being so vulnerable in the open. It encourages others that "if she can do it, so can I."
Thanks for sharing your journey. God is good. He doesn't give us more than we can bear, even thought it is hard to understand why we need to suffer sometimes. Continuing to keep you in my prayers.
I like this style of video!
+crystalpaganperez Oh good! I liked filming this way 😊