Vlogging with EDS: My Brain is Draining into my Heart! Shunt Day and Care Package Opening | Week 98
ฝัง
- เผยแพร่เมื่อ 8 ก.ย. 2024
- So sorry it's so late and long! It was QUITE the week!
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As a nurse, I'm so sorry to hear about your horrible LP experience .. breakdown of communication is definitely a big problem at times in the hospital and it's unfortunate that it affected you in this way! I've learned so much about EDS watching your channel, as I didn't learn about it in nursing school..Thank you for being a great advocate for EDS through your channel and kudos for being a advocate for yourself and feeling empowered to share your experience.. Hope you make it home soon💜💜💜
I want to say thank you, your watching and learning what can happen to patient's, and be so humble. This shows a lot about your character, and how you care for your patient's... I've been through so much as a patient and I will tell you that those who take the time to listen, and trust that the patient knows their body, and their needs does so much to gain the patient's trust. Trust anong the chronically ill and injured community is huge. So many potential mistakes could be avoided if those we trust to take care of us, would just listen. I'm thankful for medical professionals like you!
@@albanymountainhomestead 💜
13:50 you were not out of the loop Christina. You ARE the loop and everyone for that lumbar puncture was outside of you! It makes me so irritated that those doctors and nurses were so fixed on what THEY wanted to do. Especially that you have had a much more comfortable and successful lumbar puncture before. Ugh, I know your a patient person but my momma bear is coming out for you! Huge hugs to you strong lady! You are amazing and so so strong.
HeyyBrey this happens time and time again. I had a serious problem with the stent they put in me. It came out. Insanely painful! I threatened the doctor that if I had to leave his office not only would I call the police for cause of bodily harm. He needed to look at my chart immediately! Not only was the stent coming out, I couldn’t walk properly. My legs felt like iron weights. Come to find, they never gave me antibiotics during the procedure and I was going septic. And the stent was coming out my urethra. The nurses and doctor panicked.
I am so fearful of have surgeries. I’m in need of one at the moment for nutcracker syndrome. I cannot express how scared I am to get it done. I would rather save 68,000 for the surgeon in German to do the surgery. Or travel to Texas to do the surgery where the German doctor taught. Drawing a blank on his name but he is the best for us EDS’ers.
That very doctor did my surgery high on Xanax. My GP warned me. I decided to go to a therapist. Just to talk to someone outside of my situation get my frustrations out, and not put it all on my husband.
I had to take a 300 question test because I wasn’t depressed. I took the test to see the doctor. I circled repeat questions worded differently yet meant the same thing. I wrote comments back to such evil harmful questions. When the doctor called me back he asked, have you ever thought of working in the psychologically field. I chuckled and said, you have a set number of state patients correct? He agreed and said 18, that he could not turn away. I expressed that I have gifts. I am a psychic medium.. and I cannot handle some people’s energy. He laughed. I didn’t. He’s says, wow you’re serious!
On my 3rd visit, it came out. He was the doctor that gave my doctor the Xanax. I saw the whole thing play out. I started that session with the whole story of how my doctor messed up, and how I know he was the doctor to really fumble the whole situation.
He was pale and full of fear. He was worried I was going to sue. I assured him. I couldn’t at this time because life was very precious to me and I didn’t have the time to even begging to get involved in suing. I’m an artist. I had been painting a beautiful leather chair with a golden orb in the middle. I gave it to him on my 6th and last visit. I told him to hang this wear he can see it, and remember me. He cried and said, I’ll never forget this event. And it’s hung on the opposite wall from his desk.
I actually went back 7 months later to say hello and see if he kept that painting. He framed it and yes... it’s still there.
Another reason I didn’t chase the lawyers. My reading came to me, someone else was about to wreck the doctor that harmed me. This woman receive 1.3 million. She had no husband and 4 children of her own. I knew in my heart that if I sued him. This woman wouldn’t have had the large amount she received. It would have gone much different.
The doctor still works as a doctor but he is not allowed to do surgeries and had to hire a doctor that works over him. Which it’s awesome. But. No one else has been harmed since then.
I knew in my heart, I would be taken care of. And I had to take the back seat for the future of another.
I cannot express how many doctors have NO CLUE about EDS. Took me 40 years to finally get recognized.
And I’m fearful of surgeries because I come apart always. Nothing stays in place. And with this next surgery needed. I cannot in good graces allow the surgeons I’m surrounded by touch me. I know it will end badly if I jump into what I need so bad.
I have all the problems nutcrackers brings. Pelvic congestion and I cannot have the surgeries they offer for PC. With EDS’s patients they never work out. If they take anything from the left side pelvic region or a hysterectomy, that blood has no where to go but uptakes by the spine.
I’m at a rock an a hard place.
So I’m saving to go to Texas or Germany. Period.
I hear all the time. You look fine. Or you’re exaggerating.
Seriously 😒 over the medical field. I get some get it. But the majority is awful!
Just finished watching the vid. I canNOT get over how many times your medical team has screwed up and you have caught them in the nick of time! Truly terrifying. Thank God you were on top of it, even though you are fatigued and in pain! Thank you for standing up for yourself and being an outstanding example!
You really work so hard to advocate for yourself it's eternally admirable but also very frustrating to hear that you have to.
brain on fire was so close to home but such a good movie. I literally cried through all of it.
You share plenty❣️. As a fellow Zebra (25 years to get my diagnosis....... you have been extraordinarily gifted in your ability to encourage, mentor, discuss subjects that many (our culture) avoids. I appreciate that you mention Clare’s recent death due to complications of her lung transplant. I consider you to be as courageous and generous and inspiring as Claire.
I keep you and your family in my thoughts and prayers and whenever I watch an update you ALWAYS bring a smile to my face and remind me to stay in the moment and commit to self care. Your mother is awesome as is your dad & sister. Your motivation and advocacy has personally been a positive force in my life🌈🌼💚💞💝you are a gift
Sleep & rest well my angel ❣️🙏🏽
Sending my love, Elizabeth
I was a registered nurse for 40 years. I have to tell you that I find our current health care system absolutely terrifying. I fear for my safety should I ever land in hospital (God forbid).
In my past as a mere CNA, I'm a medical nut by nature, and as a patient it is so frustrating how much the quality of care has become so incredibly difficult to find doctor's that even CARE... It's few and far between...
Whenever I had an aged parent in hospital, I would not leave their side, as I did not trust anybody to do their job properly. We have to advocate, advocate, advocate.
@@loiscassels8966 I'm the same way.
@LoisCassels I agree that our current healthcare system isn't doing its job, and its scary. Its also so frustrating how hard it can be to find doctors that care.The good news is they are out there. I'm sure many of us value your insider's view into the hospital system--I'm glad you shared. I'm wondering about the details of what/how you think quality of care has changed. Especially about the quality of hospital care you refer to that makes you fear for your safety. I think I wouldn't be the only one interested to know what kind of hospital would you choose if you had to. Thoughts? I'm also curious what measures you would you take to protect yourself while there, considering your safety concern? I hope I don't sound sarcastic at all, I'm being completely serious only because I relate to your concerns for my own loved ones. I am sure many folks who read your comment do too, either for themselves or others. Anyhow, if you care to expound, I think that would be pretty rad, whatever you care to share. If not, I respect that as well. I just wanted to invite you to share more, were you so inclined. Have a great weekend!
I'm on a lot of meds, some have interactions with and can't be taken together. I also have to take my doses 12 hours apart (not 10, not 15, etc.) Earlier this year I spent 10 days in the hospital, and boy did I have to self advocate, calling the head nurse in, giving her the "what for". Every shift change it was the same thing. Boy was it exhausting. I did apologize to the nurses about being "bitchy", they were telling me that they aren't used to someone so in tune with their health and meds and really appreciated my self advocacy. So, I get the frustration, hospitals are not a place for recuperation!
That was some awesome advocating!
Trying to have your meds delivered for dosing at appropriate and specific times or trying to avoid being given drugs that can either interact to OR that you are even allergic to should not be cause for calling you a "bitchy patient"... that's called trying to get out in one piece!!
The sweater is beautiful!
It is terrifying how ready they were to use things you're allergic to. Temporary tattoos is a great idea. Maybe by your hospital band. At least here, they have to scan it to do anything. You have amazing strength. I am a terrible advocate for myself. My sister is my advocate. She really changes my life.
You have such a wonderful support system. You are very loved.
What a great sweater! I've only managed rectangles. Is there a good resource you recommend to learn?
i love how your first thought when opening gifts is ''how can i use this to make my friends and people looking after me happy?'' you are so caring. what a beautiful person you truly are. x
The temporary tattoos sound like an amazing idea! I need copy that for anytime I need to go to hospital so I can list all of my medication allergies.
I hope now things are going smoother for you and your family. So happy to see the video!
OceanicMarauder I love this idea too! Going to have to see what company she uses and get some made up for myself too!
I know how frustrating it is when people don't read your chart or communicate clearly in the medical community and it's got the potential to have deadly consequences! I use temporary tattoos as a medic alert bracelet so that in emergency they can access my medical info. I'd be happy to make you some. I also have a bunch of yarn and about every size knitting loom they make. You have had it rough this past few months and totally deserve to have adequate communication with health care providers and definitely need to question everything even though you shouldn't have to. Hugs and healing thoughts!
I’m so sorry you went through that! One thing I learned about Hershey Medical, is they screw up quite a bit! There is a HUGE lack of communication! A nurse over medicated me with 3 times the dose she should have given. Every patient MUST advocate AND have someone with them 24/7!! So frustrating!!!!!
It's a huge issue all over the country - very scary!! The amount of horror stories out there about hospitals is so disturbing. It's happened to my family, basically destroying my sisters life because she didn't have an advocate and couldn't advocate for herself. Our health care system is DEEPLY flawed and in need of a massive overhaul.
“Only when you can be extremely pliable and soft...” How appropriate for EDS!! lol
So frustrating that sick people have to be so on top of everything when we’re barely holding it together and need to rest! I know the feeling.
Haven't finished yet but have to comment! 1- the package opening is sweet! Don't feel bad for sharing that, please!! 2- don't be afraid of the words "have you read my chart" and "we need to get on the same page before getting started"
eparke20 Great idea for what to say!!
Oooh I like both those! Adding to my vocabulary. I have trouble verbalizing what I want. I have super bad Dr anxiety and I'm really terrible with confrontation. But I try. These will help. 🤗
@@samiamisme
try and write questions down ahead of time to ask is one good thing to do before your appt and another we found is to audio your entire appt that way you can go home listen and perhaps think of other questions!! Good luck!!
@@lisaclutton4294 thank you for that. I do try to remember to do this but I often only get through one or two problems.
Speaking as a nurse, the first rule is listen to your patient! The patient knows their own body. I always discuss the plan of care with my patients using terminology that can be understood and ask if they have any other questions - always. Kudos to you for being such a fabulous self-advocate, although that I'm so sorry that you had to be. Their outright negligence could have had tragic consequences and I'm sorry that you had to go through that.
One of the reasons I follow your channel is to learn from the patient's perspective (although I am also a patient myself on occasion for a few different reasons). You do a wonderful job of communicating that. Providers on all levels need to learn to listen and communicate-that's really the basis of healthcare and how you help people.
I'm glad the embroidery thread being wound already helped! It really has just been sitting here in my room for a number of years waiting to be used (I am totally way more into crochet). I knew I wouldn't get around to it and I thought of sending it some vlogs back when you started getting into the embroidery. Seems my forgetting about it proved useful since we can always use some entertainment while stuck in the hospital. My longest stay so far has been just a bit over a week and I just remember being so bored.
The tablet arm really was the best advice I've been given and I'll always be thankful for that, especially knowing there will be more surgeries in my future. I can hope there won't be, but it's something I know is inevitable. Though I've had the tablet arm for the last 3 of them, I really wish I'd known about it for the 9 before!
Sending some positive thoughts and vibes and hope things continue on with a bit of silver lining for you even with it's hard to see.
-Sam
Praying you get to go home soon, Christina! You and your mom are just incredible. Your positive outlook inspires me more than words can say. ❤️ I absolutely love the sweater you made - how you are able to just whip up a piece of clothing while in the hospital just amazes me. Also I love that necklace you received! I need to get something like that which goes with every outfit. ❤️ you got this, girl
Omg I never thought of bringing a hot water bottle into hospital! So smart! I always would try to sneak my hot pad in even though they aren't allowed. Maybe you can do an updated what to bring to the hospital video? Also a medical binder video if you made one! 🤩 I am glad to see you uploading again, I've been re watching some of your videos ❤
Wow, you truly are: "Christina the Magnificent!". The grace and courage you have as you go through all of these horrific procedures PLUS enduring the actual symptoms of your illnesses too, is astonishing. I admire you so much! You're also a great teacher, Christina. I've learned a lot watching your vlogs (even though I'm a much older Zebra .... ;) Thank you so much for your advocacy and sharing your life with us. You're making a huge impact on so many people with your information, your generosity, your bravery and well, for just being You.
Sending you healing thoughts, healing prayers, and much gratitude. Darjoli/Jennifer
Hello sweetie! Sending you lots of Shabbat love this Friday evening xxxxxxxxxxxxx
I’d be honoured to have you as an honorary niece, Christina because at my age I’m definitely old enough to be your Mum! Momma Elke, please may we be adopted sisters? With love from Penny in London. Christina, I’ll be posting some pictures of our Succah (tabernacle) this weekend as the next festival starts on Sunday evening xxxxxxxxxxxxxxxxxxxxxxxx
Iam very ill n need a MOMMA ELKE I AM AFRAID OF MY SURGERIES AND GOING TO BE AMPUTATED MY WHOLE LEG _I WAS A RUNNER AND A DANCER NO ONE IN A HOSPITAL IN IRELAND MY HOME GAVE ME A SINGLE KIND WORD NOT EVEN AFTER A STROKE IHAD BEFORE I WAS 30 -LUMBARPUNCTURES ARE HELL I AM SO SORRY LOVIE! GET HER ELKE BUT INEED YOU TOO!
@@brookebowers3529 ~. I'm reading ur comment Sept 2020 - when I see Christina it's lovely to see her smile like the one on her Amazon parcels - I also realise that she is so lucky having her mum/family etc... I'm 64 but have never had parental support or affection and that hurt - have u had surgery? What country do u live in? I'm British but have lived in Italy 42 years
To see you SMILE (truly smile full of love and happiness😍♥️) is literally making my eyes well with such emotion! These videos make me so happy! And seeing YOU happy makes me even more happier! Get better ASAP! I hope the infection is gone!!! Xoxoxo love you Christine🤗😘😄❤️
oh my gosh you are so beautiful!! just glowing and smiling through life, radiating light and love through every connection.
HI Christina - so glad you received my card - i hope you liked it - so sorry to hear more surgeries have been needed - i so hope you can feel better and go home real soon - sending - prayers- love - strength and hugs - feel better soon X - also wanted to send love and strength to your lovely Moma - what a fabulous women - You are an inspiration Elke - Just like your Daughter Christina - stay strong both - Love ClaireMarie UK
You are such a wonderful girl Christina. Thank you for these videos and the hope and inspiration you give me and others. P.S.You should post an amazon wish list :)
All the best wishes for you,and as a mother and grandmother I can not imagine how this must be for your mother,she is a trooper,and I give her a virtual hug!
First thing I told my new Neurologist was I'm not doing a lumbar puncture for at least 3 months. I've had 6 in the last 3 weeks, all needing blood patches. I have a neurological autoimmune disease called Cronic Inflammatory Demylination polyneuropath. It's like MS, I'm stuck bedbound and at Loma Linda university hospital in California. I'm paraplegic and have had as ever relapse. So they're trying to stabilize me. Been in the hospital for 32 days. The hardest thing is I'm away from my family. As the hospital I'm at is an hour and a half away. Sending you lots of love and healing.
You are your own best advocate. Your active participation in every step keeps you from so many disastrous errors and lack of communication. You are very well informed. Keep yourself on top of things. As a medical editor who also has EDS, I occasionally annoy the doctors by asking pointed questions. Keep it up. Gentle hugs.
I got tears in my eyes from all those amazing gifts and cards, everybody is sooo amazing!! Wish I had friends like that, when I’m in the hospital all i see are my parents and sending cards to me? Nope there is one person who does but thats all :( and I loooove getting cards. I’m soo happy you recieve so much love. I see my cards still didn’t arrived, hope it arrive soon ❤️ and you mom is amazing!! Thanks Christina’s mom for being such a power mom, and all the things you do for and with Christina. 😘
You have such a kind heart. I hope you feel better soon.💐
Dear Christina, you are truly an amazing zebra warrior. I’m praying that the shunt is working properly now and that you will be headed home soon. You did a lovely job on the crocheted sweater, I love the style. Sending you abundant healing blessings and much love. Hug’s to you and your wonderful mom. ✨💖✨💫
Christina, I really hope you are able to head home shortly so the real healing can begin!! You are such an inspiration for so many Christina, myself included!! You show so much love, patients and understanding for everything and everyone around you!! You are wise well beyond your years my little zebra friend!! XOXO 🦓💞
Thinking of you always Christina
Sending healing vibes and prayers your way. xoxo
Thank you for being a self advocate. It is so helpful to hear your message. Praying for you. Thank you.
So proud of your advocacy! I am so sorry that you went through all that with the lumber puncture. My heart hurt hearing what you went through:(
I'm thinking🤔, maybe it's time for zippers to be put in for easier access to those shunts😉. Let's hope and pray that this final adjustment is the final one and y'all can go home🙏🦓💪💜
I love hearing from your mom lately. Shout out to her for being awesome! Much love to both of you. Love your vlogs.
You are truly an amazing person. I hope all goes well with the shunt. Your Mom is so sweet.
Oooo... So sorry the hospital and staff were not paying attention to your charts and all of the miscommunication that went on. So glad you were able to communicate everting very well to them what your needs were! Also thankful your mom was there in case she needed to avocate for you. Yes prioritize your health, no one expects you to put up videos at particular times or days. We are just thankful and encouraged if or when you can! How cool you got your new shunt on my birthday!!! Lol your mom already picking the socks she wants!!! So sorry the setting are not just right... Your sweater is so completely cute!!!!! Awe sweet Lady hoping his shunt is a keeper with no more issues. Keep resting up. Great big gentle hugs to you my friend! As always thank you for another encouraging week of video!
Great idea about the temporary tattoos!!
You go through so much! I pray that your health and life will get better for you.. It’s great that you are such a good and knowledgeable advocate for yourself. Sending best wishes for better days and peace .🌷🌷
You did an amazing job with your sweater, you're such a badass Christina!
I can relate to this in every instance. I have lived with a shunt my whole life (21 yrs) and have had a lot of revisions so, I completely understand. I'm inspired by your courage, and strength. Thank you for sharing.
Hi just found your Chanel and just one thing you are so strong I have other illnesses that make me really really sick as well. And I know how boring and daring hospitals can be I'm glad you have this Chanel and show others how it can be and that you make the best of it and still do stuff in bed not just sitting staring In a wall. You are really inspiring for me with this it makes me not feel so alone in the world
O bless ya ,you've been through a lot again ,I just don't know how you do it ,you are inspiration to everyone sweetheart,I hope this drain works cos think you've been through enough now , everything crossed for you ,and thank you for letting everyone know how you are ,love to you and your mum and gentle hugs to you get. Better soon x
do it!!!!! i'd buy temp allergy tattoos for myself! fantastic idea. I had to ask for a patient advocate at the hospital this week...they blamed it all on a miscommunication....really it was due to no communication. keep fighting girl! i look forward to your videos :)
I'm the exact same way! It's a shame we have to be on top of everything with our medical teams but that's what we have to do unfortunately!
I always say "my body, my way"
💜💜
Lots of love and prayer to you and your mum xxx
Hello my name is kelsey, i have just recently found your channel and have been watching your videos the last couple days. I have to say that you are so incredibly inspiring to me, and Im sure to many others. You make me appreciate my healthy body, you make me realize how much i am capable of and can do that i take advantage of, you make me realize how privileged i am with my body, and the way you keep a smile and making these videos and putting in so much hard work to create a positive life for yourself has me just stunned. You are so incredibly strong inside out, and I will never understand what you have gone through, but I do understand, that you are such a blessing to many, a breath of fresh air and a role model for me to keep going. I wish you nothing but good energy, and health, and good days. You really try make the best of everyday, and that’s some i really look up to and admire and see your raging perseverance for a life you love. Simply magnetic and moving. I hope you have a great day today, much love
Awww Kelsey, you are incredibly sweet! We definitely do what we have to do. But we do try to have fun and keep positive. We are human but we do our best ❤️
thank you for the reply, keep doing you, Im glad to see your update and see you're feeling more yourself. cheers.
You are such a pretty girl and you are so smart and you are such a trooper, you always have a smile and you are such a positive person, it breaks my heart that you are so sick, I have a daughter your age and I'm blessed as my daughter is an amazing person but she has never had any health problems that have effected her life , you make me realize how lucky we are and if anything ever changed I'd hope my daughter had the same outlook as you. Stay strong and I'll pray for you. I'm new to watching your story and I'm sending you hugs from Melbourne Australia. Keep up the amazing attitude your an amazing role model. Can't wait to watch all your past clips and catch up on your whole story. Thanks for sharing your story xo
Oh my god I LOVE brain on fire. Very intense though for sure.
You are an inspiration as well as others, the grace of life is giving what you define overall by your own personal understanding of you- your circumstance and what you have to give, which is fine even if uniquely different- so that it's from the heart, God and love for yourself and life which extends towards others in ways conducive for you and within the situations differing from one person to another.
Prayers for you, been through so much and your so brave & strong . An inspiration to many.
Prayers for you to have a smooth and healthy recovery
You are such an inspiration for me. You're always looking at the bright side of things and you're such a strong warrior! Plus you're such an artsy person and I love art so I feel like we could be besties and make art together. I miss your ukulele playing bye! I hope you feel better and get to leave the hospital soon! I look forward to your next vlog. I smile every time you post a new one!!! I send a huge hug! Oh an your momma is the best so I send her one too! :)
My heart goes out to you. I had a pain pump threaded thru abdomen to spinal column for chronic pain and rsd and it had to be replaced due to old age malfunction Unfortunately, I developed a csf leak which required surgical repair and then led to an infection which meant they had to remove my pain pump equipment again. Then I was on 8 weeks of iv antibotics before they could put in a new pain pump. I want you to know I just found you and can relate to you on so many levels. The csf leak was so scary and 2 years later I still shake thinking about my nightmare and hate the thought than than in 7 more years my pump will need to be replaced again. Anyhow, my heart goes out to you and and I pray you are home soon.
Your smile is beautiful and your positivity is helping you heal quickly 💜
Aww. That comment about Lauren made me sad -- for everyone. It's so tough in families when one sibling is sicker than another. It makes them feel forgotten, while the sicker sibling feelsguilty. Them feel overlooked and unimportant (or even resentful of the other), the sicker sibling feel responsible FOR their pain (while also hurt that their sibling is so resentful of them when they can't help it). It's just a scenario where everyone is in pain but there's nothing anyone can do about it. It's even harder when a parent - in their attempt to be supportive of each child who's hurting - accidentally ends up making BOTH kids feel bad when they try to go out of their way to support the other.
I have a similar but slightly different dynamic in my family too and it's just sad all-around. I felt for everyone in that side comment here bc you could see it's a contentious topic, likely with a lot of pains that each family member keeps to themselves and doesn't voicing. I ache for both Christina and Lauren who were unfairly put in a position that sets them up against each other.
I watched brain on fire and it was really good. definitely hits close to home.
I'm the Lauren with the socks and nail polish. ^_^ I'm so glad you loved them so much!
Those looms are amazing and so easy to use. They also sell rectangular ones to and there are loads of books on how to make different projects. My daughter and I love ours. I have to admit that everything you have been dealing with is making me a bit nervous about my upcoming appointment with my new Neuro surgeon. I have a history of being quite unique in how I have symptoms, develop different things, have something that is rare or they have never seen before. I will let you know how it goes. Praying everything goes well with you and you get to go home soon.
You're so strong and let God do all his work. Love seeing you doing all you can.
God bless you sweet girl, and your family. I'm praying for you.
You rock Christina you are so strong and brave to do all of this and I love that you speak up and tell the doctors what they need to do sadly that's what we have to do these days otherwise they will do something that might harm us in some sort of way I hope you're feeling better love you kayla
I have so much respect for you I cannot even explain it!!! You give me so much hope and you are so positive yet real, it really gives me a positive vibe every time I was a video of yours!
Today I woke up having an attack of my Ménière disease, which basically means I have to lay down on my back all day because I am to dizzy to be able to stand up and to nauseous to move in any way or to sit or to lay down in any other position than laying straight on my back. So I had to lay down all day, depending on my family for everything because I cannot move or get out of my bed and I felt so bad and extremely guilty towards them luckily my mom gave me everything I needed for a few hours so she could go to work and I could wait for my sister to come home. I had to miss a day of university though... I felt so so so down and guilty and sad today and upon that I was to dizzy to do anything. Luckily my dizziness is getting a little better so I can open my eyes and be on my phone so I can watch your videos and your beautiful spirit can cheer me up, because that is just what I needed!!
You are just such a wonderful person and you can learn everyone about what it means to be positive and to never give up!! I just want to thank you so much for making such beautiful, positive and inspiring videos no matter how difficult your life gets for you!! Out of the deepest of my heart thank you for being the person you are and showing that to the world through TH-cam!! Just thank you!!
Awww hang in there love! Vertigo is the WORST! So sorry you are struggling. I hope that you can sleep off the episode tonight 💜
You are so strong & such an inspiration to me!❤️❤️
It sucks that you have to be so worried about what the doctors are doing! You're going through so much already you shouldn't have to deal with that as well!!
It is good to see you doing better. Your in my heart and prayers.
Yeey! painting is the best to keep your mind and body out of stress, so enjoy it lots!!! :D
No honey- non of that is ok on the lumbar puncture. That is unacceptable. You need to have a meeting with that team when you are able and make it clear they will NEVER have a communication breakdown like that for you again. What if you hadn’t been able to see what they were doing? They could have severely injured you or even killed you. That cannot happen again. I’m so sorry you have to go through this, but do not let them get by on an excuse of not communicating- that is not ok.
Jenna Montgomer agreed. It's unacceptable
Yes, please report this!!!
I fully agree. You are amazing and push through the unthinkable but what happened during your lumbar puncture is unacceptable and thank God didn’t turn out differently. You have enough trials on your own and do not need any extras due to another’s negligence. Hopefully it can be prevented in another by reporting. I am truly proud of you and your courage, determination and strength and also for your mom’s, dad’s and Lauren’s! You are all warriors!
totally agree. I got angrier and angrier as she kept relating one thing after another. Add all that together and the potential consequences are scary and tragic.
@@twiggy042999
twiggy... Yes, I think it's due to more then one person's incompetence too ( which is even scarier!!!!! )
Love to you, love to your mom, love to your family.
That sweater you crocheted is so cute! I'm sorry you had such a bad experience with that lumbar puncture. It's super hard to advocate for yourself, I feel like no doctor I've been to believed or even listened to anything I was saying until I went back for the same thing over and over again. So I'm trying to learn to be more assertive when I feel they aren't listening to me.
So sorry for what You have been going through hope everything works out. You are so sweet and courageous Your Mom is such a sweet person. Praying for You. Sending You hugs and love God Bless
Wow but at the same time you should be very proud that you know more than they do when it come dealing with your medical problems. Let's hope the shunt does its job for you 😊👍🏾🇬🇧
Bless in lovely. It's lovely to see all the gifts u r getting.. shows how loved u r. U r very special and u r so strong (I know u don't always feel it but u really r super strong and a fighter) hope the new shunt and work on it is helping u. Hope u start to feel much better soon and start to build some energy and strength back. Keep fighting, keep smiling...
Oh and OMG thank God u keep asking what they r using on u and what they r doing, that's scary when things r going on unchecked. Thank God u know yr stuff. Sending healing hugs.... can't wait till next weeks video and hope yr improving.... Xx Xx
lauren is not forgotten by us its just we don't see her much and its christina channel and she has faced things many of us could not handle i know it must be hard on lauren not having mum there alot but as a parent myself its hard when one child needs more of you but it can't be helped and i know lauran prob feels bitter and angry and at christina sometimes ive been there when was her age but now im a parent i understand but back then i hated my brother alot sometimes which is bad but was true then but tell her we hope she is doing ok too
Love and prayers sent from the uk ❤️🙏🏼 , just subscribed to your channel , I just love you and your mum , hope you feeling better xx
Hey Christina! Thanks to you I now have a neck pillow which has been a God- send in the car and when I get a headache. I love hearing from fellow EDS warriors :)
Do you mind sharing where you got it? I need a neck pillow methinks.
I got the caubeau travel pillow on amazon. it was kind of pricey but worth the money
Sending you so much love hun❤ I'm really hoping this shunt behaves for you! You NEED A BREAK!!!! As always you are inspiring ❤ Big gentle hugs from NZ. Love Nicole xixo
So glad you are so smart and aware of your body so you could tell them. That is awful. We definitely are our own advocate.
christina! i am so sorry you had that experience with that radiologist and the puncture. that is not okay, and i'm sorry you have to micromanage your doctors and nurses, it's not fair to you.
i didn't experience that on your scale, but when i was young, i had an oral procedure, and afterwards they prescribed my penicillin, which i am allergic to. my mom was very angry with them, lol
spinal taps are absolutely horrible. after my first two, which were both extremely traumatic, I made them sedate me for the next three. they think all my spinal taps made my chiari worse, and my neurosurgeon also thinks that it is a miracle that my brain stem didn't herniate during the taps. also can I just say that you are so incredibly strong. I hope the pain starts to ease up a bit soon and that this new setting doesn't over or under drain. I'm hoping, thinking and praying for you 🌻💛.
What kind of doctor do you see who decides you need a shunt for the high pressures in your brain? A neurologist? A special kind of neurologist? I'm starting to get super bad pressure and pain from my neck up into my brain that I feel like is coming from my cervical instability, which has become worse lately. I've come to the conclusion that you must question every person who touches you or touches the things that go in you, when in the hospital. But as you noted, it's still can be trying, difficult, and shhhh happens. You're doing a wonderful job. And I'm loving the tattoos idea! It is genius. I love that your mom has friends there too. 😊💕 Would you be willing to share how EDS has affected your sister, or when you're home again, interview her? I didn't even know you had a sister, let alone one with EDS. Lol.
It can be so frustrating when trying to advocate for yourself, and the medical professionals treat the patient's like we don't know what the hell we are talking about. I hope in the future when something isn't being done right, say NO. Until you get them on board to do things in the way that is best for you as the patient who knows your body and condition in some cases better than the doctor's themselves... Take care
I just want to say thank you for your uploads there are so much positivity in them that it's easing a lot of stress I have about my situation. Couple days from now my doctor is gonna run some tests to find out what the white lump underneath my tooth on my gums is. It's not leaking like a typical abscess would and there's no pain coming from it but when you touch it you can tell it's a growth rising over my gums. I'm hoping and praying it's not cancer. It's been there for almost a month and the first time I noticed it I didn't think it was a big deal because I just thought it was inflamed because a piece of food got stuck in my tooth. Anyway I just wanted to say watching you is so inspirational and it's been helping me get through these couple days before my appointment so thank you.
vagician Good luck!! I hope that everything turns out well for you.
Prayers and positive thoughts for you!
Prayers for you and that everything goes ok and you have a good outcome.
You guys are so sweet thank you so much!
Love the sweater you’re talented. 🙏🏽😇💞
I wonder what kind of unit she is on? Med surg? Neuro/telemetry? Seems like they don’t really talk to the doctors as much as a regular med surg floor would.
Oh my goodness what a hot mess of miscommunication!
Yes to the tattoo idea!
I am really sorry to hear about your LP issues, events like that can be so hard to deal with, especially when you already aren't feeling well. Advocating for yourself is so important, and can be very difficult. We tend to have a lot of issues with that ourselves. We have sometimes struggled with medical staff not believing us, or even acting as they we are challenging them. My husband has a huge amount of PTSD when it comes to medical procedures and facilities. Mostly due to situations where medical staff didn't listen to us. Most of the time we find that we have to be the difficult patient or at least we are treated that way because we are always speaking up for ourselves. I would really hate to be one that isn't able to advocate for ourselves or just doesn't know how. Doctors and nurses aren't perfect, and they make mistakes, they also sometimes become so robotic in what they do, that they forget that people are individuals and not everyone is the same. While most people may react one way it doesn't mean everyone does. It definitely makes things hard. Hopefully you will get your shunt sorted out soon and can go home.
Omg!! As someone who has had 3 LPs ever (And I'm not fused or allergic to any LP related shenanigans) the idea of you having to get through that makes me want to curl up in a little ball (although...maybe not....that's a handy position for an LP....can I curl up into a hexagon???) My last LP was a couple of days ago and I was a whinging mess holding both my friend's till my fingertips were dislocating. Hope you're majorly proud of yourself for getting through it :D
I'm highly allergic to NSAIDs and will go into anaphylaxis in seconds even if I can get rid of the NSAID (fortunately the first time I had it it was topical but you could watch the blisters coming up). Anyway, I've had people take blood gases from my earlobe but coz I have tiny child ears they wanted to put some cream on it to make the blood come to the surface so I asked what was in it coz it's often just something like chilli but this was FULL of NSAIDs and when I said no she firstly said it was fine if I was allergic because it was topical, only a little bit and on my earlobe......which I feel like are all irrelevant!! And then when I continued to refuse she said I clearly didn't want to get better (even when I said I'd cope if someone tried once and then just went in my wrist), then she disappeared and came back and said that she'd told the Dr I was being non-compliant and so the Dr had said to hold off treatment!! Fortunately the doctor came to ask me why I'd refuse such an easy test and when I explained she was totally understanding....good thing the Dr did manage to find time to come see me because I was properly in type 2 respiratory failure and was moved to ICU fairly quickly!!
You being in the hospital gave me a flash back to one of the many time I’ve been in the hospital I have this memory of one time many times I was admitted to the hospital. I was septic from and infection and I couldn’t stop throwing up. I was connected IV fluids and antibiotics but I was so thirsty. I was crying and screaming for a glass of water and no one would give it me because they knew I would throw it up and make things worse. But didn’t understand that. I was little and scared and all I wanted was a glass of water. I remember my parents trying to calm me down but I just kept screaming and crying. I have a lot of memories from the hospital like that and I’ve never really dealt with them I just try to forget it. I see a therapist but my current issues always take first place over my past. I don’t know how much time you’ve spent in the children’s hospital but I spent so much of my childhood there. The children’s hospital was fun sometimes cuz they had all the fun people who did magic tricks for you and brought therapy dogs. They give you toys and presents and things. It sucked but I also thought I was kinda fun. The first time I went to the adult hospital I was like this sucks! There’s no one here to do magic tricks for me. 😂 I try to say positive and I’m really hoping I’m gonna make it through 2018 with no hospital visits though I’ve been to the ER I think about 16 times :/
🤞 Fingers crossed for no admits in 2018! Thats a good goal! ❤️
Wow that sounds awful! I have Chiari and hydrocephalus, no fusion though. I do have a shunt; the current one drains into my left lung lining. All that to say I know how you feel and I'm sorry you went through all that!
Get better. Love your videos
I love the zebra pop up card. I have PI and we use zebras also
Wishing you the best from california!
I just finished the video and my prayers are with you hun
I got those same socks, & when i pulled out THAT EXACT PAIR, my mom said "ooh those are MY colors" exactly like your mom did
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