Vlogging with EDS: Failed Spinal Fusion and Snow Storm Apocalypse | Week 107
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- เผยแพร่เมื่อ 19 พ.ย. 2018
- Faith over Fear Giveaway: gimmyit.com/giveaway/faith-ove...
"Secret Spoonie” Gift Exchange:
www.elfster.com/exchange/view...
Knee Brace: www.donjoyperformance.com/don...
Car Humidifier/ Oil Diffuser: www.amazon.com/econoLED-Humid...
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My Instagram: @watercolor_me_impressed / watercolor_me_impressed
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My Email: Watercolormeimpressed@gmail.com
Accessibility by Abby provided the captions for this video for free. If you'd like to support this chronic illness warrior here are her social links:
Twitter: / accessibleabby
Facebook: / accessibleabby
Ko-fi: ko-fi.com/accessibleabby"
Lullabye (Sting) by Twin Musicom is licensed under a Creative Commons Attribution license (creativecommons.org/licenses/...)
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Country Cue 1 by Audionautix is licensed under a Creative Commons Attribution license (creativecommons.org/licenses/...)
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Your Mum is a SAINT driving for fifteen hours! Driving can be extremely exhausting, especially in rough weather and at night when you really need to be concentrating. I'm in so much awe of her, she clearly loves you with her whole heart. 💖
My moms the same.unfortunately eds man
Let's talk about the mom of the year award
Im enjoying watching these vlogs. I’m also a zebra and I’m home wrapped in my braces and heating pads and pretending we are friends. My guess is I’m not the only one who does this 😉 thanks Christina for making a lonely journey less lonely.
Thank you so much Christina for vlogging about your medical/personal journey I have learned so much about EDS simply out of interest. I am a 4th year nursing student and I am finishing up my labor and delivery rotation and this week I had a new mom who had EDS and the nurses on the unit had never heard of EDS and I was talking to them about it and it’s all because I learned it from your vlogs and that really helped me understand how to take care of my patient. I really wish you the very best and i hope your health improves as much as possible. You really are a huge inspiration and learning from you is absolutely incredible and eye opening so thank you for that. Sending you lots of prayers and positivity 💜
Good for you! I have EDS and teach nursing students. Isn't learning way more fun when a topic interests you? Lol. Thanks for taking an interest, for educating others and for joining a noble and sometimes thankless career. Best wishes to you!
I have also learned a lot from her in terms of how to take care of my patients! I hope more nurses and medical professionals take time to watch her journey, and others like her. It has helped me so much in terms of caring for my patients and thinking outside the box. Not only is she a great support for her community, but she’s making better nurses. Thanks for sharing Christina! I’m always praying and rooting for you, and I always look forward to your vlogs.
Christina
Hi fun tonight
You need a fully functional Iron Man suit for Christmas.
Everykne say that to me to agaga
Man Christina, you have one brave and strong mother. To drive for like 15 hours through a blizzard to get you to the hospital is incredible. Your family is so strong to keep going through all of this. I hope the surgery goes well and this one works better for you. Ans I applaud you for still filming and uploading a video. Good luck! :)
Oh wow your poor mum! How on earth does she manage to drive for that long that must be horrible and she never complains
Her mom must be incredibly patient which is always great to have!
Christina,
Awwww! I'm so sorry spine surgery again. I know sometimes that can happen. I had mine done 2 yrs after my first. Mine was infected with MRSA and I have no hardware now. Completely different. I'm so glad your surgeon is on top of everything. Your mom by the way is super FANTASTIC... Well you and your sister will recovery together😇. Thank you for always sharing your videos💜🐼
The patience of your mother is absolutely incredible, such love and dedication is amazing
God bless your mom! You guys definitely had your guardian angels watching out for you on your trip down in the snowstorm.
I have chronic issues from a long-ago car accident and I couldn’t relate more to your comment about sneezing wrong. It’s epically frustrating to feel like all the taking care of oneself can be negated by a simple sneeze. And that is legitimate - I have lost my cervical adjustment more times than I can count to a stupid, unexpected sneeze. I hope you are recovering and resting by the time you read this. 🥰
Your mum is a legend! She is still laughing when anyone else would be swearing and crying xxxx
Crazy people doing crazy shit in the snow in their car
"I need a valium"
"You've already had one, give me one"
Made me hoot!
Props to your mom the unsung hero in this story! I would never had made it through that snow apocalypse! Praying for your upcoming surgery!
Christina, you are truly POWERFUL beyond measure💜💜💜.. and your family, especially your mom. Such a strong woman! And the drive that it took to get your appointments this time! I am completely humbled when I watch your vlog each week😊 Thank you and I pray that you feel better soon!💜
I had one doctor tell me I’m a condundrum. Sounds more official than “disaster.” Feel free to use if it fits! 🤗🤗🤗
Best wishes and prayers in finding answers and a comfortable position. Thank you for sharing your journey and showing that there can be happy moments and smiles on a difficult journey. Also, best of luck to your sister on her surgery.
I geez I got so worried watching you guys traveling 😱. So glad you made it safe to your appointment.
You are really going through a lot! I will surely pray for you. I just feel so bad for you.
Your Mum is a superhero without cape.
Omg Christina,your still going through it , traveling all that way ,your mum is certainly super mum to drive in those conditions,and as for you ,your such an inspiration to everyone we should call you the bionic woman, yes in deed
I love watching your vlogs and thank you for keeping up with them knowing what you are going through ,hope they can get you sorted asp ,well my lovely lady see you on the next vlog gentle hugs to you both and all the best xxxxxxx
Wishing you a very speedy recovery! Get better soon! Love from🇨🇦
Happy Thanksgiving Christina! Im glad u and ur mom safely made it thru that snow storm. I'll pray that u'll have a safe surgery.
That snow storm was horrific to drive in especially around NY NJ, I'm glad you made it through safely
9:54 I don't feel like Trish would approve of that technique! 😂😘
You in your braces falling onto your couch was everything 😂
Can I say again how ABSOLUTELY AMAZING you are? I admire your ability to be maintain such a positive and cheerful attitude. Love you lots.
Happy Thanksgiving! Thank you for sharing your journey, and your family's journey, and good luck with this next round of surgery! I'll be praying for you.
Yay! Another video. What a tumultuous week! I'm sorry about Thanksgiving. It's hard to be away for the holidays.
Oh, my goodness! That snow and ice storm! I am so sorry that you had to endure all of that...and then OF COURSE the CT was not just laying down and going through the machine...it had to be a complicated one. Sounds like my kind of luck. I am keeping you in my prayers. Would love to know if you do get a PO Box set up...I know your friends at Light and Love Crochet Swap would love to send you some love! Lots of love and prayers for you and your family!
Oh Christina, I wish I had words to make it all better for you!! You endure SO much and you handle it with such grace. I know you have your days when the tears come and that is normal and expected. You help me (fellow zebra) handle what I go through!! Thank you for making these videos!
Insurance- I hate it that it’s dictating when you have surgery. Sending you prayers and a big gentle hug from Oz
I agree, some health issues are extremely time sensitive, and waiting can actually cause permanent damage especially with spinal cord injuries. Studies show you have minutes before permanent damage begins. Not days, weeks, or month's, and most insurance protocols demand 6 weeks Physical therapy before surgical intervention.
A trick the truck drivers use to battle ice on windshields is a bit of isopropyl alcohol in your washer fluid it lowers the freezing level of the fluid to keep it from freezing and spraying it on snow/ice will de-ice your window (while staying warm inside the car, poor mama)
Thank you for chronicling your story. I long for a sustainable lifestyle. I find that the trickiest part is monitoring my attitude, and being willing to adjust my expectations. Gratitude, forgiveness, patience, self-love, service and acceptance are some of my favorite tools.
Geeze what a rough week!! Thats so scary w the roads! But so happy u guys r okay! Im so sry abt u needing another spine surgery :( im praying for both you n your sister. 💜🙏
And i just want to say thank you for sharing your life w all of us! 💜 i cant explain how much you have encouraged me and inspired me with your videos n just amazing n grateful attitude you always have! Thank you! 💜
Such a lovely present getting all those balloons 🎈 xx
I’m praying for you and your family. We had a second miserable snow storm in Massachusetts. You are better where you are for now.
Thank you for your videos although I hate all the hospitals visits and procedures that you have to endure ! As a junior nursing student these videos have been very helpful in learning about the condition and how to better help my pts
Man, that looked like a heck of a scary drive, and I’m from Wisconsin so I’m waaay used to the snow. Glad you made it safely! Sorry you have to have another big surgery.
I’ve been praying for you Christina!
You got this Christine we are all thinking of you and praying for you love you
Send good wishes for ur surgery, i will be keeping a eye on facebook for updates. Ur mom is great and think we all need to send her love for battling the storm for you. Driving for that many hours is impressive event without being in a stormy, being in aa storm makes it even more impressive.
I hope you continue enjoying that new knee brace! I actually beta tested it for DonJoy back in the day. It's my favorite go-to brace for when my knees act up. ^_^ Good luck with the revision surgery!
Your mom is a trooper. I don’t think I could do that trip from your perspective or your moms.
I know Christina has a lot of problems but mom is a saint and deserves a lot more gratitude. Yet when she speaks it's always about her and her discomfort. She complained during the whole drive while mom is trying to keep them alive during that time.
@@imthinkingmaybe2615 cuz u gef frustrated from both ends.shes also vloggjng her experience even though its complaining its also our realities and per eds patient is dif
Hugs hoping you heal and resting nicely
It's 6:30am here and I was just about to go to sleep when I saw this! No sleep just yet lol
Hi Christina,I’m Art and I just started watching your videos and they are such a huge inspiration to me..I’m 37 years old and in the past 3 years I have had 2 cervical spine fusions..first one anterior cervical spine fusion c4-c7 that failed completely so I had to do a revision fusion laminectomy C3 to T1..also I had to repair to shoulder labrum repairs..right elbow decompress ulnar nerve..and tons of epidurals and trigger point injections with no relief 😞I’m a father of 2 beautiful kids and I have an amazing wife..my last surgery which was the revision fusion and laminectomy has put me out of work for 15 months in two weeks I’m going to attempt to return..First reason is because financially I am tap out completely..second,I need to make sure I keep my benefits that way,I’m able to continue go to San Francisco UCSF hospital to see my neurosurgeon.its been so rough.. I take depression medication and medication for anxiety and sometimes I feel like it doesn’t even work..It’s amazing to see you so full of life and it makes me very happy..My neck is fully fused front and back and I lost a lot of mobility,I have constant nerve pain and muscle spasms and pain 24/7..so watching your videos makes me appreciate on what I have and gives me the strength that I need to get through this..you are truly amazing and beautiful and thank you so much for your videos they lift me up..I would love to hear from you thank you
Happy Thanksgiving Christina. Hope you get to spend it at home with family, I know you can't eat, but I also know how much the family time means to you. (i've been watching you forever). Well that stinks that your stuck in Maryland for Thanksgiving. But good luck with the surgery.
I have chiari malformation. I had my decompression as an emergency surgery in 2015. I had 4 bleeds. Long road, still struggling but glad to be alive. I would love to talk to you guys. I don't know many people who have these issues.
I totally understand the feeling of waiting for the next shoe to drop. But living one day at a time and sometimes one hour at a time is the only way to live, whether with illness or with good health. That's how I survive.
Your mom is totally a trooper. I can't imagine driving that long in that kind of weather. And I feel so bad for your sister. Seems she is always left out; obviously not intentionally. I hope she gets lots of attention when you guys are at home.
Hope your surgery goes well!
Christina, instead of that huge unit for your oxygen ask for a portable oxygen concentrator. I have the unit that stays in one place then I have one that comes in a small carry bag its awesome and i use it quite often.
You all are amazing. Blessings. You were also so funny about the car trip, I would have freaked.
I'm so sorry about your failed fusion and need for such a big surgery again! I have EDS type 3 and my symptoms are nowhere near as bad as yours but I definitely deal with a lot. I wish I could just give you some of my good health and take on some of your bad health in return. Your positive outlook on life and constant good attitude towards everything you are dealing with is inspiring. I'm 44 and looking at neck fusion. Fortunately my thoracic vertebrae are somehow in good shape but my lumbar-sacral vertebrae are a mess and my SI joint instability is so painful. I don't even know what the plan is for that. I just get dystonia in in fact my thoracic spinal muscles, my rhomboid muscles and scapular muscles, and my lumbar-sacral muscles are torture! I guess they call that being a "stiff zebra" but my ankles and wrists are a night.are and pop in and out CONSTANTLY unless I wear the braces, I'm in ring splints and a knee brace, a C-collar and a part time wheelchair due to my horrific lower back pain. I also have Narcolepsy with Cataplexy which causes falls on a regular basis which I have a service dog for and I do get help from my 73 year old mom and my 23 year old daughter who has been developing the same symptoms as I had at her age which I am so sad about because they are incredibly painful and when she gets sick she stays sick and she is miserable. I don't have doctors who know a thing about EDS and last time I went to PT my knee dislocated and we couldn't get it back in. My ribs would pop out and my sternum would pop and crack so loud they'd have me stop those exercises because everyone else could hear it. I had told them no about the recumbent bike but they asked if I could just do an easy setting for a few minutes. My knee went. I didn't go back. Now I'm in two knee braces.
I just hope you get through this with ease and am so sorry to hear about your awful trip to your surgeon and missing Thanksgiving and your sister's surgery. Your parents are saints, you are a total gem and I hope Christmas is amazing for you!
I'd like to start a channel myself but have no clue what I'm doing and am asleep so much, but when I am up with Narcolepsy induced insomnia, yes it's a thing, it'd be nice to have something to do other than be in front of the TV which is rotting my brain faster than the brain fog lol!
Oh, my G-tube is coming up as well, I'm bloated like I'm 9 months pregnant from SIBO and gasteoparesis. Just waiting on one more endoscopy and to see my GI surgeon. Ugh it's never simple but boy do you know that! I wish you nothing but the best for your upcoming surgery and hope everything goes well for your sister too!! 🦓💪❤️
Oh no, I prey you catch a break. I hope this surgery helps alot
All the best wishes!!
Hi Christina, That was quite the ordeal you and your mom went through on the road, I’m glad you made it safely to your destination in spite of it taking forever to get there. I’m sorry you are having to go through another surgery so soon after your last one to fix your shunt. Life with EDS is never easy for sure. As for living in the moment I try to do my best, but I agree that it’s sometimes necessary to plan ahead for the recovery that often follows the moments. I do a lot of bead weaving and find that it’s great therapy and requires me to be in the moment. Please know I am keeping you and your family in my prayers. I hope you have a nice as possible Thanksgiving day with your mom and friends. Take good care and may God bless you with a successful surgery and recovery. Many blessings to you and you loved ones. ✨💖✨🍁🦃🍁🦃🍁✨💖✨💫
Super excited I just signed up for the secret Santa!!! You are in my thoughts and prayers... I wishing you and your family a very wonderful thanksgiving!!! I will be checking your Instagram to see if anything with your surgery date!! Sending you and your mom lots of hugs and love all the way from Oregon!!!
Wishing you the best.. Bless up, love
Hi hun! You're in my thoughts and prayers and I'm sending hugs and healing thoughts your way! Have you ever contacted patient airlift services? It is where pilots use their personal planes to fly you and a caregiver to out of state hospitals for free. It takes a few weeks initially to set it up, but once that's done, they do all they can to get you to your destination as soon as they can. I used to travel with O2 quite a bit and my home health delivered my o2 to wherever I was staying, 4 free so you don't have to pack it.You may want to see if yours can do that. We love and miss you, but your health is top priority right now, so vlog when you can and don't worry if you can't.
,
Who is your surgeon? I became a new follower this week. I too have Chiari, EDS and many other comorbid conditions you do as well as a few you don't. Glad to have found you. You and your mom laughing has made my day!!
You leave me baffled. For two reasons. 1. I'm getting few opinions from different doctors if I have EDS .. Since my catalogue of current diagnoses could fit into this one. 2. I don't know ppl who have been chronicly ill for years or decades and me .. but I enjoy this. And mostly I just lurk watching videos, but I decided to comment to yours ... 5 vids ago ^^
So odd seeing ppl who suffer like me (some worse) talking and making sense.
EDS is still relatively new to me. Still it it's so familiar the more I read and dwelve into it.
Thank you for making it easy to get into, understand, digest .. even enjoy since I'm left smiling.
Be well. =) Feel loved.
Thanks for teaching us as you go through your journey. We learn so much from you. About the vision, I had no idea that people could actually see leaves on a tree. I thought something was wrong with my glasses and that it was abnormal to see that much. As it turns out My vision was 20/400+ and I couldn’t see the big E on the eye chart lol :) but fortunately glasses and contacts help me see well enough to function. Take care of you!
Thank goodness for cell phones- I too have been trapped in bed due to chronic illness and had to call my husband who is in the next room to come and help me out of my pillow fort ( elevation of head because of gastroparesis, elevation of legs because of back injury...). It’s like once I get settled I say to him ok see you next week lol!
Love to know more about the new knee brace more because I had one of the original versions of that brace.
God is surly with you everyday and in your hearts. your mom is a hero for driving in that scary mess.. my charms fell of my bracelet you made. not sure how to put back on but I still have them .. Happy Thanksgiving and I will be thinking about your sister because I will be alone for Thanksgiving also
You've got to get a onesey with a zipper bottom flap.
You are a real corageous and fighter girl. Impressive. Best wishes.
I saved your vlog till I felt really bad because watching you would make me feel better. I’ll offer my services as a Nana if you need an extra one my grandkids think I’m pretty great. My chiropractor said I was a hot mess too.when you were shuffling to the couch I thought of the old song “ shuffle of to Buffalo”
I am so sorry you need more surgery. It is natural to feel disappointed when something else goes wrong. I really hope and pray that after this ordeal you will be able to function at you best for a long time. I also hope you sisters surgery goes without a hitch too. You are in my prayers.
Evonne Nyberg love you❤️
It's soon a New Year! Let's look at goals for the new year. After a successful recovery period.
You could never ramble too much. Praying that your surgery goes well.
Oh, I am only 13 minutes in, but my heart is breaking for you...pausing for some comfort food (Deviled Eggs) before I continue! Don't go anywhere Christina! ;) I'll be right back!
Crazy that at the point of this video being posted that I already had my port for 8 months, was able to independently access/do my own port care including deaccessing and then near the end of November '18 beginning of December '18 and I was starting my journey of independently infusing IVIG after my insurance wouldn't agree to me getting IVIG as outpatient hospital but they were totally fine with me being independent in infusing IVIG.
Ooo sweet lady... So sorry... Thank you for keeping things real! The wedge pillows are great- I sleep on a set of them, one for the upper one for the lower! Such a crazy adventure for you ladies but greatful you are safe and sound! Lol a survival documentary... I understand the lack of sleep thing. Question: is your sleep disrupted quite often? If so is it neurologically related or some other things? So cool the donjoy brace- I've seen those before and wondered how much support they provide and if they restrict too much!? So thankful that your surgeon is able to navigate all of this, but wow such a big surgery again. So sorry and praying all the more for you. EDS is not for the week of heart, mind and spirit... And then navigating the medical world. Every day is a productive day even when it's a rest day! Awe as always always good to see you for the week! Great big gentle hugs my sweet friend!
Admire your good mood! You are amazing and beautiful 💛
I got caught in that storm too. Awful. I would see doctors in Boston if that is at all an option. I hope things get better.
I've missed so many months of your vlogs & I missed you!! So upset by the state you're in, but... With EDS, it's always about putting one foot in front of the other & taking one day at a time.
Thinking of you.
My spine is falling apart I can’t get my Dr to even give me a back brace they put me on a 10Ib weight restriction I have so many thing wrong with spine and all my Dr want to do here in Florida is give me injections with medication i’m allergic to and the GI issues are unbelievable. Glad you have Dr that care
Just found you thank you awesome video very good info 👏❣❣❣
Has Trish tried dry needling on you, providing it's legal there? Just curious if that helps those strong spasms? Wishing you best...p.s. your mom is a rock star! I have a feeling you get your strength, sense of humor, and lovely positive personality from her. That drive was terrifying....I live in Arizona and do not drive in snow well. I lived in it a couple of years and hated every minute of it. I know you already made it but I'm saying prayers the whole way and will continue for good news on Friday.
I don't know how you do it!? Big Gentle Hugs!
My O2 sat drops at night so I sleep with O2. Whenever I go out of town I contact my home health and they contact a medical supply where ever I am (usually TX, KCK or KCMO (and Branson)) and they deliver a concentrator + an emergency tank In case of power outage. Aren’t u allowed to do that? Would sure make it a lot easier on you and/or your fam. New subscriber here💫
Oh wow i never thought about the fact that snow would melt & then freeze onto the windshield
That drive would suck. 😞 You both have such a great attitude.
Ghaaa! That car ride made me worried even though I know through Instagram that you got to your destination. Scary.
I'm sad for Lauren being home alone for Thanksgiving. I hope she can be with friends or relatives at least.
I am thinking of you all. ❤
Be well and stay strong.
Linda-Marie Hamrin my dad is working but I luckily have my aunt and grandparents ☺️
@@lauren3596 I'm so glad to hear that! Hopefully Christmas is less of a pain in the ass. :P
Lauren Doherty you are a beautiful person! I’m so glad you want be alone on Thanksgiving
Hey! Somehow you got recommended to me, I have EDS as well! I have vascular type EDS as well as type 3 so not only do my joints and ligaments hate me, my veins try to kill me on the regular too lol (gotta have a sense of humor). I have been seriously considering making a TH-cam channel once I get a few things under control. I am subscribing 😊
We miss you - I hope all is okay and that you were just tired and busy...
So glad you made it safe! On a side note: when i click the gift exchange and sign in with FB, the exchange just says restricted content and doesn’t allow me to sign up. Anyone have suggestions on how to access it?
I love every video you make.Thank you for sharing.
A few of us can’t access the secret Santa! I think the link needs to be sent on FB, Twitter, or email, that seems to be what the FAQ say?
Hope that things look up for you soon, though, and that you find something to look forward to everyday, even when it’s hard ❤️ sending love and gentle hugs!
Yep, same problem
My brother is allergic to latex and always hated the mylar balloons when he was a kid.
I hate that you have been struggling and need more surgery but hopefully this is the last for a long long time xxx
God bless you girl! Where do you find all of your patience to put up with your body
I'm not sure if this would work for you but their are some programs dedicated to flying people just for medical treatment, especially in emergency kind of situations. I believe it's called angle flight not sure though
We have the same brace!
Do you deal with skin breakdown when you are immobilized? ♥️
❤️I'm sorry. Why didn't your doctor send a script to a place in Boston? That would give your mom time for the storm to pass.So glad you guys got there safe.
Why do you not have an electrical adjustable bed?
To join the gift exchange do we need to be invited? I tries to look at it but it says restricted only... :(
I always love to hear any thoughts you have about your supports. What works, and what doesn't, challenges of specific braces and such. Thanks for your info!
22:26 you totally made me yawn!