Vlogging with EDS: BRAIN FLUID IN MY BELLY?! Another Surgery and Heading Home | Week 89
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- Опубліковано 15 лип 2018
- WEGO Health Awards: awards.wegohealth.com/
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Brave Souls Blankets: www.bravesoulinc.com/
Gift Gowns: www.giftgowns.com/
Vitamin Patches: www.patchmd.com/
Where to find me:
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
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My Email: Watercolormeimpressed@gmail.com
Ehlers Danlos Society:www.ehlers-danlos.com/
The Chiari and Syringomyelia Foundation-CSF: csfinfo.org/
Lullabye (Sting) by Twin Musicom is licensed under a Creative Commons Attribution license (creativecommons.org/licenses/...)
Artist: www.twinmusicom.org/
Ugh hospital employees shouldnt wear perfume at work. That was a rule when i was a volunteer in a hospital but some of nurses i work with now wear perfume every day and its such a little thing but you dont know who will have a bad reaction to it
Christina: What do you think? Am I roller coaster ready?
Her mom: Oh please, no.
I love her mother so much!!!
You seem so much more lucid than you did before the shunt was placed! Even your eye contact and your speech feels more engaged. Super cool!
Your mom's "oh please no" at 20:55 😂 So glad you are feeling better
Amazing video Christina, you're like a different person! That shunt really seems to be a game changer in so many ways.
Your mom as usual is simply amazing and should be nominated for an award of some kind 🐼
Oh, and the car mechanic was a very honest person.
9:20 aww sweety you lost track of 10 completed sunflowers?! They are awesome!
Seeing you brush your teeth and clearly not go completely transparent or green skinned was amazing!!
Because of the shunt valve size mix and match with availability, it may be an idea to get an industrial/surgical catalogue print out to put in your medical notes for your multidisciplinary team xxxxxx
You are a freaking rockstar! So is your mom! I will pray that your shunt stays clog-free and that you get more used to the little valve-baby swimming in your belly. You are kind, funny, and so generous. ✨✨✨
Now two weeks later, the ease of removing staples for multiple surgeries makes perfect sense to me, but with EDS associated slow healing, I would be interested to hear if there is variation in your healing experience with different closure methods Christina?
Xxxxxx
Love you mum!!
I always look forward to your videos. You are an absolutely wonderful advocate and so inspirational. I really hope your shunt continues to do its job for as long as possible. I'm a nurse with a chronic illness, and have had to stop working because of my health. I miss working so so much and currently am really struggling mentally and physically. You really encourage me to be more positive and I am going to start setting goals for myself. Thankyou. Love and hugs from me and Winnie 🦔 xxx
nicola hocking good for you Nicola, just make sure your goals aren't too much...
EDS’er here with some experience of CSF issues (mainly intracranial hypotension, but a bit of rebound intracranial hypertension after blood patching, managed with Diamox). This is a super informative channel. Thank you. Wish you the very best.
It’s nothing short of miraculous to see the improvement in your well being! You even have colour back in your cheeks! Thank G-d for the wonderful neuro-surgeons who were able to help you so, so much xxxxxxxxxxxxxxxx
Bless You Christina. You are an inspiration to all of us Zebras everywhere!
“There’s 15 bucks at stake” I feel it!!! 😂
Sooooooo happy for you! So woderfully awesome to feel more on the normal side! Lol noodle fingers describes it so perfectly - it really does feel that with out mine also! As always I look so forward to the weekly videos! gentle hugs from one EDSer to another!
Thanks for acknowledging the diagnosis issue and still having a place in the eds community. I have hypermobility syndrome and multiple other conditions. But I am in the UK and mention eds to doctors and they don't know what you are talking about. Diagnosis is hard to achieve but feel it is important to find others and feel you belong and are not alone. Xx
Over 20 years aog, we were visiting family in NYC and we randomly discovered the Peter Pan show on a small marquee in an alley. We bought tickets right then and got amazing seats! Cathy Rigby flew right over me! ALSO, I have seen both King & I and South Pacific at NSMT, both starring Cathy Rigby again!
Hi Christina,
I was watching one of your video's from a year ago. Shunt surgery you had. Your valve flipped? Wow. You really had such a tough go with Shunts till the heart one?
Anyways I'm 6 wks out revision valve replacement for my LP Shunt. Mine was shifted and sideways.. And stuck on a number 3 completely defective! My surgeon was really upset about the valve the brand. Codman TESLAS Plus. He had to send it back. He put in a Medtronic Strata. I did get lucky no tubing needed to be replaced but my next Shunt will have to be a VP Shunt. You have been through so much and. Have given me so much strength when my head hurt so bad at times I questioned things. I Thank You. Please keep up only when you can. I was so Happy to see you back again.💜🎠
i loved this video especially the heart felt talk on wednesday, its great that you brought up people diagnosed w/ only hypermobility and how that and eds can have similar issues/ effects
pastel nerd
Me too. It made me feel so welcomed.
And especially recognized, which is hard when I’ve gone from just sore joints sometimes, to nearly housebound, and back.
It can be hard to remember that it’s good to have less symptoms and nothing considered serious when it sometimes seems like it just makes my struggles more invisible.
Thanks for the recognition for all types of struggles.
13meli55a im so sorry you had to be housebound, that must have been difficult. Im currently in pt because of my joint pain so i understand the pain of dealing w/ sore joints. I hope youre doing better!
Girl. You are a rockstar! Cheering for you!
I know I already posted on your instagram, but I really am just so stinkin happy that you were able to make it to your show!! 💕💝💕💝
love you, Christina!! glad the surgeries finally worked out!
So glad you got to see the show! Yay for goal setting and achieving it!
You are really funny, you know, you seem more together and witty and quick darling!! And you are absolutely right about the regular interruptions and sleep deprivation... and when you are being frequently woken up, forced to face the pain because you aren't being allowed to sleep and it's exhausting having all the procedures, how on earth are you supposed to remember the day and what your name is?!?! Xxxxx
I love you angel, I'm so proud of you, so thrilled your glasses are back in action!! They really suit you darling xxxx
Ahhh, Christina..so sorry you have had so many belly surgeries. I’ve joined your belly surgery club, I’ve had 7 belly surgeries since this past October. Having another one soon, will find out the 23rd of this month what the schedule date is. Christina, one of the surgeries I had, I was there a month. Omgoodness, I was so depressed!! How do you do it? What is your secret to staying so positive? Do you ever find yourself thinking the worse? I do sometimes.:( I just don’t know how much more my tummy can take! I pray so so much, and I try to put all my troubles in Gods hands..and I pray I get back to myself real soon. Enough of me and my troubles!!
I think it’s so kewl you and your mom are so close. The love you both have for each other is fantastic..It’s the way it should be. I so wish my mom lived closer to me as she lives in Florida.
I LOVE your new blanket!!I need one with Ellie’s on it :)
I know right..hate when my already little sleep I get when in the hospital is interrupted!! Lol As soon as I’m about to go into a real good, comfortable sleep, door open and I hear, it’s vitals time. Lol You have got to see the other version of Peter Pan...It’s awesome!! Then again, I’ve bet seen the theater version. You look beautiful by the way..love your style! I’m quite a bit older then you, our fashion choices are very similar. :) Omgoodness, I love “The Nanny” too!! I watched the tv show daily, still do if I ever see it on.
Well, my thoughts and prayers always!! I hope you continue to recover in a positive way, not to make another hospital trip!!
Peace and love~
Love this!!! Amazing to see how much can change for the better in one week 😍
Such a huge accomplishment...one after another...that is the way you get through and enjoy life. Im so happy for you....Isnt it the best when things take a turn for the best. Fly high and spread that fairy dust!!!
I needed this video soo badly today. I'm glad you're home and made it to your show! Love you girl!
This just proves that “dreams really do come true”. I’m so happy you recovered enough to see Pete Pan. 🧚♂️💖🧚♂️✨💫
I'm so happy for you! Your energy levels seem so high and you do seem back to normal.
Christina... you really are amazing, you *are* special just like everyone here! Take recovery easy, I'm glad you're doing better! I'm actually right in the middle of getting an EDS diagnosis... I never thought it would be me, until it one day just clicked and I realized it *was* me!
Anyone can answer to to this topic:
I was wondering if anyone can help me (and most likely many others) by adding closed captions [CC] to Christina’s video’s? I’m have a very serious case of hard of hearing. Does the [CC] have to be added before the video gets posted on UA-cam? Is [CC] super hard to add to a video? At the moment, I don’t want Christina to do it, if at all possible.
She has WAY TOO much other things to focus on. But I would love (and I believe many others) to enjoy hearing about what Christina is sharing. She is such a wealth of information! It’s super frustrating after even 3 minutes to have to figure out what she said, especially to her Mom when Christina was out of the shot. Let alone, try to understand her for 30 minutes.
I would love to hear from anyone who has information about doing closed captions on videos that are already posted on UA-cam. Thanks for taking the time to read my message.
Lane Proeber her auto cc are actually fairly reliable. I know that's not always the case, but it reads her well.
I am a pretty good typist. I cannot make any promises, but I will do my best to do closed captioning for her videos, when I'm able to sit up long enough.
It takes 24 hours for the automatic you’ve captions to show up, I believe.
CC is a device function. What are you using to view videos on?
Michelle Stephens - I watch it on my cell phone. I’m confused. Are you saying that if I watch the video on the computer that the CC are going to show up faster then the CC on the cell phone? Can you please help me understand what you are saying? Thanks so much.
I’m so happy you’re doing ok Christina!!! I love your mom! She is an amazing mom and you are a wonderful daughter and I can see your gratitude.
This is a journey that has been very painful and frustrating. I can hear that you’re feeling better in your voice.
Please take care of yourself.❤️
You are one though cookie! Glad to hear you are doing better, Happy Healing!
You genuinely seem to have learned to be content whatever the circumstances. And when you can't, you are still so genuine and honest. I admire your openness and your wisdom choosing what to share.
My favorites part of Monday, glad you are feeling better!
Congrats on making it to the play! And I’d love to see Mr Sheffield. Loved The Nanny too.
Love the sunflowers! Crochet? Pattern? I run a crochet shop on etsy. Love flower blankets! And I'm not usually this hyper but, on my third cup of tea today.
You are truly amazing!! I have Lumbar Shunt surgery coming up. You have helped me cause I never knew that when upright you can get dizzy ETC. Thank you. I have to rare diseases Adhesive Arachnoiditis and IIH. I'm going to go to a Dr who can get me a genetic Dr to be tested for EDS. I hear there is over 200 forms of it and for peace of mind I need to be tested. I do have a bad scarring problem. I did hear leaks, IIH, and EDS to all go altogether. Well thank you for all that you do.
Hugs, Lisa💜
I have EDS and I've gone on speed racer, the racing wooden rollercoasters. Need my mom to crack my back as soon as we get off. Yet I still ride it. #stubborn.
So pleased your feeling better and your mums car made it, you get plenty rest x
I just love this. You are just a radiant person. Thank you for sharing your journey with the world! I teared up a bit when I saw how happy you were after Peter Pan! It drives home the point that you never know how much a certain thing can mean to someone, and encourages people to live in the moment and enjoy life despite its twists and turns. You're an inspiration, and I endorsed you for sure! You've taught me so much about living with chronic illness and I feel that you'll make me a better professional when I move into my desired field of work. Thank you for everything you do!!
Endorsed you!!!! I’m continuing to pray for you! ❤️❤️❤️
Congratulations on making it to Peter Pan! What an accomplishment! It looks like the surgery has really improved things for you. About the sugar checks in the hospital: there are a couple possibilities. If you are off your tube feeds for extended periods of time to prep for surgery, esp repeated surgeries, sometimes they'll monitor your sugar levels to make sure you don't drop too low. Also, it's common to be on decadron or other steroids after neurosurgery, and that can shoot your sugar too high. Either way, it's to ensure tight blood sugar control.
You are such a superhero you really show how we chronic illness warriors can get through so much more than we think! Sending you so much love I was so happy to see on Instagram you got to go to Peter Pan it’s a favourite of mine too I loved how they twisted it up in once upon a time. Xx also congrats for your wego nominations I was nominated for my you tube channel too what an honour!
You’re looking great, Christina!! And no you aren’t rollercoaster ready!!
Wednesday is 6 days post op after my ACDR surgery and I’m home but in bed way more than I thought I’d be. Thanks for making me smile!!
You are such a positive person and you make me smile watching your vlogs. I have a vp shunt in my head to drain fluid from my brain into my stomach cavity.
I happy that you're feeling better. I can't imagine how weird having that shunt. I had a pic line once and it drove me bonkers!
You are such an inspiration! :D
Your mom is a rock star! ❤
I love your vlogs Christina
Love your videos!
I love your personality. I am so happy your feeling better and got to go home in time for Peter pan. Hugs
The website for Redbox was super helpful to me with the live chat
As someone who went to high school as an “Indian” (it was our mascot) I relate to you on the not knowing you were being racist
Lots of prayers to you, always hoping things get better and God provides. Try to find a way to enjoy outside if you can. blessings.
So glad you are feeling better. Side note! VLC media player is a free open access media player for playing dvds on computers that don't come with a media player.
I love your little afghan hun. Let me know if you are willing to make another. Sunflowers are my favorite! I would gladly buy one from you :)
I'm so glad your better
Wow
God bless u and your family. Ur always smiling. Amazing.
I’m so the same with needing to sleep with a blanket on even in the summer and I use my blanket that’s made from the same material from that I won from Kelley’s cuddle cottage on instagram (she’s who makes Mary Frey’s blankets)!!! You’re right it’s totally the perfect blanket and I’m so glad you won one, you deserve it!!!
I’m so glad you’re feeling better and your neuro symptoms have subsided and you got to enjoy the show that’s amazing!!! I always love collecting confetti from shows too, it’s kind of a tradition for me lol.
Love you eds friend!!
I would love to know where you found the sunflower pattern. Looks supper pretty
So just today i went to my geneticist to talk about my blood result and it turns out i have 3 unknown/ uncommon mutations, and that i finally have a true diagnosis for a connective tissue/ hyper mobility and now we just wait if they can figure out what they are. We go from there but i can say im happy for having a new piece of my puzzle.
I have a gastric pacemaker and I have a odd little bump 1.5 years of having it you get use to it
Ur such a rockstar!!
I'm so glad you are feeling good now and got to see Peter Pan!
Stomach surgeries are so difficult. Praying for smooth recovery from here on out!
Theres always someone who is having a harder time than all of us. Acknowledgement is humbling tho. But you are special. Dont dismiss that. I hope you are doing well. I crochet too and ur sunflowers are pretty
You rock!
Your rain-noise machine (in the background) makes me have to pee....LOL
This is the first time I seen your vlog, I think you're amazing. Love your personality, you had me smiling with you. The Sunflower blanket you're crocheting is very pretty, do you have a pattern for it?
Next time you're there put the windows down. It literally smells like chocolate. It's amazing.
You are so strong and beautiful God bless you 😍❤
Hi i love love love your videos!!!And i had a few questions. Will you ever be able to not ever wear your neck brace and will you ever be able to move your neck again?
I’m getting a Peter Pan tattoo over my allograft (that protrudes and looks very...interesting lol) between my shoulder blades :) At least then when people stare at it they’ll have something cool to look at
I voted for you sweetie !
Lol roller coaster ready. Probably never if you don’t want another neck surgery
Nope, i've definitely called that number too when the disc was scratched and wouldn't play! They just gave me a free credit code to use.
I'm soooooo happy you got to go to Peter Pan!!! 👏🤟💜 And congratulations on getting not 1, but 3 nominations!🤗 #zebrastrong 🦓💪
I have EDS too! Hyper-mobility type.
I love the music in Jekyl and Hyde. I like North ashore Music Theater, but I rely on the T so it’s better if it’s in Boston. I want to see Jekyl and Hyde so badly now.
Omg I want one of those sunflowers😭
Hopefully that will teach the transport to be careful how much or to not wear perfume at the hospital
Endorsed you!
omg ur mum is funny hope ur well xx
What headphones do you use? They look cute and are they noise cancelling?
Dang you Christina!! I yawned to.
Hey Christina
Hi surely you're able to have medical exemption from wearing a seat belt in the States?
I hate getting ivf - drs like overloading you and then diluting your blood and they wonder why everything drops.
You said in a video you had ringing in your ears, do u have tinnitus?
Wait how does that happen?
💕
❤❤❤
Great vlog, as always, I'm glad you're finally okay :) Don't you want to talk about being in a relationship with a chronic illness in a vlog or in a separate video?
+Kami Im not sure yet. Im actually doing some writing on the subject, so maybe I will make a video when that goes public. But I have only ever been in one relationship. It was longterm but we were young. We didn’t handle it well looking back. I may the worst one to be giving advice 😂
❤️🦓💪🏼
is that a real tattoo?
i will try to fix you, high up above or down below , if you never try , you never know... lights will guide you home
is this CSF leak