Vlogging with EDS: A Q&A with My Mom and More Shunt Surgeries | Week 99
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- เผยแพร่เมื่อ 6 ก.ย. 2024
- Thank you guys so much for your patience with my uploading schedule! I am trying to get it back on track now that we are home, but it may take me a couple of weeks. Thank you again to all of those who sent packages, cards, and sweet messages my way. Special thanks to the sneaky loves who tracked down my Amazon account/wishlist through my email. I don't know how I would have survived the drive without my audiobooks!
But now we are home safe and somewhat sound and I can not wait to continue on my journey of healing and return to my routine. Thank you so much for walking this road with me! Onto week 100!
My Hot Water Bottle: www.amazon.com...
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Where to find me:
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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:
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Lullabye (Sting) by Twin Musicom is licensed under a Creative Commons Attribution license (creativecommon...)
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![[Re:all TREASURE] EP.6 in 방콕ㅣ🚩 쩡캠의 방콕 투어 빵 마이 와이 👍](http://i.ytimg.com/vi/uyFw-nItA_s/mqdefault.jpg)
How and why would anyone get upset with your upload schedule? Even if you're in the hospital and your vlog doesn't go up for a week, I still am happy to watch! I'm happy for 2 reasons- 1, you're alive and kicking, and 2, I'm alive and kicking. We may not be making huge dents with our kicks, but after awhile, those little dings spread until people take notice😉. Stay #zebrastrong 🦓💪💜
Love this🤗💕
Chronic Butterfly no one could have said this better. 🤗💙💞🥄😷👑
samiamisme sesjll
Hi Christina. I'm writing this from my hospital bed. I've only been here a few day's, but it feels like at least a week. My family doesn't live in the same state, and since I live in a nursinghome, my friends can't visit. I'm only 50 year's young, and have issues related to my birth blessings. I have spent. MANY day's in the hospital over the years, and I ALWAYS find at least one opportunity to share my love and faith with. Thank you and your WONDERFUL MOM for helping me deal with my issues. You are SUCH A BEAUTIFUL BLESSING LOVE and PRAYERS ALWAYS from Gainesville Florida.
Even though I do not struggle with any of the same physical challenges that you do, I’ve been following your channel pretty much from its beginning. I was drawn to, and greatly admired, your personality, coping skills, grace, creativity and approach to life. This week’s blog has been such a huge eye-opener for me since I have always felt “less than” others because of shyness, being introverted, and many of the other characteristics your mom mentioned. So I credit you for opening my eyes, finally at the age of 66, that it’s ok to be me! If you, who I so admire, can be ok, so can I!!!! So here’s to all the creative, solitary souls who like a little stimulation but not too much, who like close friends but not too many, who flourish in safety! Thank you, Christina!!!!
Ahhhhh yay I’m so glad you got to go home!!!
That. Is. Gold. 😂🙌
Rachel Leeds Love the names and such a great comment.
It was cool getting to know your mom better in this vlog. Feel free to upload the rest of the Q&A separately. I was so so happy when your Instagram said you got to go home.😊 Yay!
You definitely should upload a whole Q&A video regularly.
Christina, you have more hardware than the bionic woman (ask your mom who she was)! Glad you are out of the hospital and healing at home. Heal well!
Your mom describing you as a kid is word for word how my mom describes me as a kid- super cautious, preferred to be around adults, hated play dates and sleepovers at other people’s houses. It is so nice to hear someone else had that experience.
Don't worry about your upload schedule at all! you do it when it is convenient and right for you. No use adding extra stress just for us. Loved the Q & A with your mom, I would love to see more. So glad the last surgery seems to have fixed the issue and you got to go home!
Dear Christina, I'm so thankful for your vlogs. You are the reason I finally got a EDS diagnosis. Currently I'm having a lot of issues with my jaw dislocating. Thank you for keeping us informed. I pray for you everyday
Yes!! Please update more of the Q&A! Loved hearing about you growing up 😅
Rest easy....you are an inspirational WARRIOR!
I sent the bracelet. Strong is beautiful.
Awwww Thank You Christopher!!! Mystery solved! I haven’t taken it off 😊
You look like you’ve lost a fair chunk of weight. Will be so good to be back home and get your strength and body back to your normal. You’re a tough girl!! Cheering you on!
Your relationship with your mom is truly beautiful. I would love to watch more of the q and a. Thanks for sharing...I’m so glad you are home now.
"I'm in a lot of pain, I haven't been sleeping, I haven't been getting calories, I'm not comfortable." I have felt like this to the extreme being in the hospital for dysautonomia, to the point I felt scared for my life. So horrible. Lots of love
You are always so positive and enjoy every post you upload. Whether you do daily, weekly or monthly vlogs I love every second. Please don’t ever feel bad for putting yourself and your health first.....all your subscribers love you and we are all rooting for a successful surgery that gets you home very soon xx
I liked getting to know your mom better. I also enjoyed watching the 2 of you reminisce.
I'm so glad you are having good results finally with the shunt!
Would love to see the rest of the Q&A.
Oh please do upload the rest of the Q & A. It was really great footage. It was great to see how much better you seemed to feel by the end of this vlog. I hope that you have a great week. Happy healing!
Yay.... I'm so, so happy you are heading home. You did absolutely awesome sweetheart to get to this point. Good luck with your recovery and give your Mum a hug from me for being so amazing too. Big but gentle hugs from New Zealand. Love Nicole xoxo
I’ve always been the kind of person who gets overstimulated too easy too! ...and I’ve never coped with more than one best friend at a time.
I love being outdoors and usually on top of a hill, or deep in a forest, but definitely not busy places and definitely not cities!
I have always really loved making things, mainly sewing, but lots of other crafts too.
My EDS has made me not able to weight bear on my right side and it was a massive adjustment, but my house has filled with fabric and trims (...ummm! ...big understatement!), so I have lots to keep me happy.
I really love your vlogs, they have helped me to process the changes that my body has gone through, and to make me not feel so alone with the things that I really struggle with. Thank you for sharing your life with me. - Billie.
Week 100 will be done OUT of the hospital.... thankfully
Awwww love how the cards turned out. Enjoyed the Q and A. So glad things are going better. Praying for your family ❤️❤️🙏🏻🙏🏻
You are such beautiful and amazing people, if only everyone was the same what a wonderful world it would be , 2 years ago I was diagnosed with ms and you have helped me so much I feel like I know you all and I'm a part of your extended family, I don't live anywhere near my family , so It's so nice to have your videos thank you and god bless you all xxx
Yes definitely upload the rest of the q and a with your mom if you have time! Bonnie and I are loving watching the vlogs together and hanging out ♥️ wish you were with us though!!!
I am new to your vlog and am so astounded at your courage, grace and determination. You are special and are an inspiration to watch as you battle through the challenges presented. Wishing you life’s blessing.
You have an outstanding attitude! I’m so happy you’re feeling better!🌸
I think you look great after all the Shunt Surgeries you have had. From one IIH to another. You look better and I'm glad your not over draining. Yay💙🌈
I'm so glad you are getting better and home now. I had to laugh at the look on your face when your mum played the music on soft toy as was priceless. My daughter is 17 years old and I get that look so often these days. Your childhood sounded so much like mine it was uncanny. May God keep blessing you 🙏
It is just amazing and wonderful to see that beautiful smile back on your face!! XOXO
I live with EDS as well, and I only recently discovered the support groups and as i was searching on TH-cam I came across one of your videos and instantly admire you for your strength on informing. I personally have never met anyone with EDS (except my mother) and it is great knowing i'm not alone =) i am now 49 and just found out about zebras this year. LOL late bloomer i guess. my mother had the vascular eds, mine is unknown because i have had many issues. I was put on a wheelchair at the age of 15 so i too have had many doctor visits and surgeries. I love your videos so much and look forward to them. To your mom she is an amazing woman and I love her compassion and strength.
What a blessing to be feeling better! Love you lots❤️
I thoroughly enjoyed the Q & A it felt so much like we were sitting in y'alls living room just talking. Very relaxing!
So happy that you are finally home! Would love to see the rest of the Q & A!!
Keep strong beautiful girl.
Oooooo no so sorry on the lack of sleep... I'm in the same boat as far as the lack of sleep... Lol your mom is hysterical! Hitting the laughing thing! Yeahhhh for moms who put there foot down and make sure you get sleep! Hoping they get you squared away! You are so right hospital life can be rough, it's not like home... Lol the zebra socks! Boo triggers are no fun... So good to see you upright for a brief moment but eeeek on the draining. Lol most complex award. So thankful you can see better with the upgraded revision surgery! You little grey sweater is so cute- you did a fabulous job making it! So exciting this shunt is working so much better!!!!! Hoping this hangs in there for the long haul for you!!! The question answer time was great and a great way to get to know the two of you better! Introverted artists unite!!! Great shirt "God is good... All the time!" As always Excelent video! Thank you for keeping it real- as always great big gentle hugs from one EDS'er to another!
NEVER feel bad about or be embarrassed to have someone play gate keeper. 😉 Give your mom a hug for me🤗💙
You are very strong, I wish you the best💖
Really liked the Q&A with you and your mom!
So so glad you are home! Congrats Warrior on making it to week 100!
I'm so excited for you!
Loved this video! I didn’t love how much you’ve had to deal with and can’t even imagine how you deal with that many surgeries especially with your intubation difficulties!! I’m so glad your going home!!! I love seeing your mom more and getting to know her! I have EDS, MCAS, cervical spine degeneration( don’t know if you remember we spoke about whether or not I should pursue seeing Dr Henderson because I need a fusion but live in Idaho!) Gastroparesis, heart damage, Dysautonomia, etc, and I’m also a mom to a child with suspected EDS and although (thank the Lord) he hasn’t required hospitalization, he did spend a year and a half totally nonfunctional (constant migraines, stomach issues, pain, insomnia and potsy type symptoms) and I was his caregiver while also trying to be present for my older son and being just so ill myself. Once he was able to get back to school, it was a whole different role added to my sick self of being his advocate, making sure his 504 was being upheld, and let me tell you that has been a living hell and I’ve ended up in the ER many times due to it. So it’s great when your mom is in your vlogs also because I can relate in a way to her too. Well I hope as I type this you are both home, comfy in your own beds and happily reunited with your Fad and sister!!! All my love coming to you!!!❤️❤️❤️
Amen God is good all the time.
Gosh it was lovely seeing you ànd you're mum , loved the latter end of your vlog.due to you being able to go home that was brilliant news .and to see you looking brighter.just love the fluffy dog you have .when iam in pain I like to hold something squishy.well love to you and your family Christina.safe journey home sweet heart.😎😃
Don’t feel bad about the upload schedule!!! Do it for fun and don’t feel pressured by anyone!!! I’m just so happy I get to see your blog!! I love your mom playing with those laughing toys lol
Yr so strong lovely. Yr doing amazing. Sending Love out to you and it mum and loads of healing to you. I prey you are home now and resting and on the mend, I know it will be slow but if anyone can do this you can lovely. Best of luck to you and hope you and yr mum had a safe trip home, I bet family was so happy to see you.... look forward to seeing you soon and hole it feeling much better 🙌🙌💖🌟
glad you finnaly going home and that was nice video, yes livestream would be great
Yes, the Lord is in the details of our life when we let him in.
Thank you for keeping my company while I waited for 4am yo take my cholesterol meds, Christina! Glad you lovely ladies are safely home xxxxxxxxxxxxxxxx
YES to uploading the rest of the Q&A!!! PLEASE! I was mesmerized just watching and listening to the Q&A in this vlog. Thank you both so much for sharing yourselves this way with us! You are doing amazing work simply by sharing yourselves and stories. I use plural because Mom is such an integral part, and as a mom myself I’m in awe and appreciate hearing both perspectives. 🙏🏻💞
Hi there! I am Disa from Northern Sweden and I found you a few weeks ago. You are amazing and so so strong!! 💪💪 And I am so happy that you live in the US, here you would get no help. I have Ehlers Danlos syndrome among other chronic diseases, and I am scared to death of something happening to me that they can't fix. No one knows anything about EDS here and surgents have no knowledge what so ever about surgeries you have had to have. And they refuse to send us elsewhere, to the US or another country that has the knowledge. They don't care if we die or not. So you live in the right country, and I so hope this last surgery will be THE one that got it right. I hope you will heal well and have no complications. I am a knitting addict, and I crochet as well and other things, and I love that you find comfort and joy in creating. You should try knitting thin socks with the magic loop method, it is so much fun and addictive. Have you find your way to Ravelry yet? Over 4 millions there and a lot of patterns. I am disascraftwork there if you want to friend me. Sending you big healing hugs! 😊❤❤❤
Watching you spending your days like this makes me praying for you daily to gain health more than ever ♡
Yes please, more of the q en a! How do you do the projects, without the silversplints? I would be in so much pain in my thumbs (they are the worst). Do you have pain in your hands and Fingers? And your mum is amazing, you're both Heroes.
I loved the Q&A!
❤️❤️❤️ Lovely surprise after I got off work. You’re such an inspiration to me. I’ve been trying to get a diagnosis for years, so I have no idea what’s wrong with me other than the constant pain. So seeing someone else get the help they need gives me hope that one day a doctor will take me seriously. Lots of love from Alberta, Canada ❤️❤️❤️
Morgiii Klein keep up the fight for answers. It took me many years of bad experiences with doctors to get into the correct hands and get a solid diagnosis. Never give up the hope and drive, you know your body. It is a frustrating process but you will get there. I pray your answers come soon!
50:23 Yes! Please upload the remainder! And have your mother on more if you are (and she is) so moved.
Loving the scarf.
If you haven't seen them, they make low-acid coffee (even folgers makes one) which I swear by as an acid reflux sufferer. Otherwise cold brewed or darker roasts are supposed to be a little lower in acid.
Cold brew doesn't trigger my acid reflux at all - no matter how strong I drink it. Granted, I'm not a daily coffee drinker; I like tea too much.
The giggle toys were so funny. And I can't wait for u to show us those play puttys. TY so much for sharing.
Oh ladies this made my day. To see you doing better Christina is such great news. Also getting to know more about you both was a great surprise. I can say now I think I know why I'm drawn to you. We are the same personality. I can say most of my life are under or over stimulated moments. So much similar too much to write. I want to definitely see more if you are willing. I feel like I have a distant friend that comes to visit , on my time, in my room and I don't need to use last bit of energy getting ready for a " visit" and I can even not have showered for three days and you don't mind lol. You also have a great mom. But I can see you know that. Lauren if you read this I hope you are doing ok. You too are in my thoughts and good wishes. Thank you all for sharing your family moments and Christina know that you have brightened my life with your vlogs and make me feel less alone in the world. Big hugs and love to you all.
Your a real light
I’m so happy you are home and feeling better. I seen on Instagram that you were able to go to the theater and I know how much you love that. The cards that you and your mom made are beautiful. Sending you both much love and blessings.✨💖✨💫
So happy you are home with the rest of your family, pup and the comfort of your own bed! This was a lovely vlog and I felt I was sitting right there next to you both with the Q&A. Would love to see part 2 footage. As always, you are amazing and that mom of yours is a keeper. ♥️ Such a blessing to have such amazing support by your side!
Yes, please upload more of your q and a with your mom! Wonderful vlog! ❤️
So happy to know you're home!
So nice to see you feeling better. Congrats on being able to bust out of the hospital.
Its nice to see the interactions with your mom.
You sweet sweet lady. I’m so incredibly sorry for what’s been going on. :( sending all my prayers and love and everything. ❤️ you’re so strong. Keep fighting
As always an amazing Vlog, loved the Q&A with yourself and your lovely mum. Absolutely love watching your vlogs xxx
So glad you are out of the hospital. Those Zebra socks are so cute.
Best of Luck! I hope you get better soon. My heart goes out to you💙
I'm so glad you're home! It's such a blunt force process. For all the fancy equipment, I wish it could be better because it's so hard on you.
I love watching you. post all your videos
"I just hated fun" hahahaha same girl, same.
At last the shunt is working yippee!!! 😊
Upload the footage, it’s sweet to listen to your stories!
50:23 Yes you should upload the other Q&A stuff! And have your mother on in the fu
ture if she is (and you are) so moved.
The child question was mine :)
I completely understand what you mean by you get the award for most complicated case. I have Lupus an from what I've been told from my rheumatologist, my pulmonologist, and my ENT they've never seen anybody like me. With as many complications as me with this type of Lupus, because I look perfectly fine. Most of the time but yet he knows when I'm sick. When I'm not because I'm not my upbeat self. An all my blood work always says that I'm fine, but yet there's times you can just look at me and tell I'm not. I don't meet any book standards of normalcy but then again what is normal. But I guess everybody's normal is completely different and for those of us that have complicated cases or complex diseases know that everydays normalcy can be different for day to day. Keep your spirits up get as much rest as possible. An just remember smile and do what you can to keep yourself positive. I hope you get out of the hospital soon so you can actually get some recuperative sleep at home.
yay!
I admire your spirit , after all you’ve been through ?☺️
Please do a live stream if you can. Love the videos.
Christina, would you go back to school if given the opportunity?
We understand why your videos are late, or edited strangely. Your poor body has gone through so much. Is he using the same incision? I can imagine that would make it uncomfortable. Are they mitigating the risk of infection? Having a wound constantly open could be bad.
Glad to see you feeling better!
So sorry for commenting twice, but I was wanting to follow you on your personal fb page as well but I can’t find it.😬
You guys should go to Jonathan Groff's family's farm in Lancaster, and see the fainting goats (most importantly the Lea Michele the goat). I bet that would make all of your broadway and nature dreams come true.
If you have the footage, you should definitely upload it!
do you have a po box
He does look like Ollie Boy! 😂
Live would be cool :)
How old were you when you got your first surgery?
What do you use the flovent for? asthma or eoe? Does it help with mast cell throat swelling?
What would cause a port to leak when accessed?
Needles not in right so the saline was going into her skin. There was probably a bump when they took that needle out. I've had it happen a few times. Not sure exactly how the needle is in wrong (it definitely feels like it's in the port septum when that happens, if it completely misses the port it feels very different cause theres almost no resistance) but it might be really crooked so it can't flush through.
Look at you up and walking! It's too bad that big can't put a zipper in you until they get the shunt adjusted properly. LOL! I know they go in and open the third ventricle for children with hydrocephalus in several third world countries. I know you don't have hydrocephalus, but was wondering if that(or something else) might be an option for you.It's permanent and prevents the need to have stunts in the first place. Congratulations on going home! I know you are more than ready to do that!
How do you bring income in to help the family? I know due to my disability I have social security income. Is that something that might help.
I do collect disability and then have an etsy shop that covers its own costs. I do pay rent to live here so that helps a bit
Awesome, sorry to be so nosy. Was just trying to help :)
Hello I am new to this page. Was wondering what is EDS ?
Awesome video - Could you please help me with something: with the neck pillow you use and also the pregnancy/body pillow - where do you get them from and do they have an exact name? Yours look awesome, I’m having trouble buying them (most likely because I’m legally blind and it’s hard for me to tell what something looks like, but as of watched pretty much all of your vlogs, I can see that they are the sort I am looking for). I do hope you have time to answer this. Also the Q&A was fabulous, I pray that the ending is accurate - I mean that you are out of there girl! I’ve been thinking of starting a vlog myself: as I said, I’m legally blind - which means that my eyes dart around all the time and people often can’t tell when I’m looking at them due to the severe nystagmus. Plus, I have no clue how to edit (but I can and probably will learn) - and I only have my iPhone 7 Plus to film on. I fIlm myself in hospital all the time (when I bought the phone I got it with 256 gig memory, specifically for video) mainly because my hands are too dodgy to keep a journal any more and I like to document things. Otherwise when hospital stay runs into the next. I have splurged and bought the two book spoony diary/medical companion. It wasn’t just the original cost but shipping cost almost the same price as the two books - no joke. So glad to see you walking, as you leave the hospital I will be going in tomorrow. Big hug from Australia
some times amazon does not give option to leave messages
I did not know that! Thank you. I’m slowly piecing the gifts together 😊
Someone had mentioned that you can sometimes check your Amazon account and it will let you know where it came from.
So how did you get sick,?