Vlogging with EDS: Hurry Up and Wait. Hospital Realities | Week 87
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- Опубліковано 1 лип 2018
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You are a trouper but I am equally impressed by your mother. Her job--moving all the equipment and luggage, driving to unknown places, finding a car repair shop in a strange city, reloading everything into a rental car-- she is amazing! Tell her I am praying for her as well as you. A true servant heart.
Your Mother is An Amazing Angel. God Bless Her . I’m 63 and have only 2 to people my age to help me with my EDS body LoL. Give her a huge hug for me ❤️
It's strange how, when there is nothing else to do but go forward, one can find calm and acceptance in the moment.
Also, I just have to say, you mum is a gem. The work she does is fenomenal.
Much love ❤
If you find yourself falling asleep listening to your audiobooks, you should be able to set a sleep timer in the Audible app that will stop it from playing after a certain amount of time. That way, you know you have a set window to find your spot in! The only pitfall might be that you have to reset that timer every time it expires and you're still awake, but it might be worth considering! Sending you well wishes!
I had a CT myelogram that was done under anesthesia. Thankfully I was out. They did the puncture at C1/2 Levels and they sat me up and let the dye drop down to the entire spine and then scanned me again. I am so thankful I didn't have to go thru it awake.
I fall asleep to audio books all the time too! Don't forget that audible has a sleep timer, so if you think you might fall asleep you can set it to stop after a chapter. It makes it a lot easier to find where you left off. :)
+Darla I often use that but my naps give me much less warning lately lol
you're seriously great and so strong.
Your mum is amazing, your so blessed to have her to accompany you xxx
Christina, You. Are. Amazing. Momma, You. Are. Amazing, too. Praying for you right this moment Christina, as you may be in surgery. I remember the myelogram headache and the vomiting that accompanied it. It lasted for days. Ugh! Wishing you all the very best and a speedy recovery. Oh. Did I mention how amazing you are?❤️❤️❤️
Christina you're so hardcore!! I'm so impressed by your ability to press on through these really rough situations. I'm proud of you. Continuing to send your lots of prayers.
Christina you are an incredible person and you have gone through a lot and are still smiling ❤️
These short moments you’ve shared you’ve shared with us today have shown me just how magnificent your character is . Such a wonderful young women , I’m praying for you and your family . Spinal taps are the worst , I’ve only had one and I hope it will be my
last .
Thinking of you young lady. Stay strong. So many of us are rooting for you. Huge kudos to your mom! Your parents are amazing. Hugs of love and support from Wisconsin!!!
Well Christina, things never seem to run smoothly do they bless first the car then, what your having done in hospital, hope your OK and not into much pain love, look forward to seeing your next vlog, really do enjoy them your so brave sending gentle hugs and love to you and your family x
Thank goodness for sleep timers on audiobook players.
My Fitbit does sometimes count knitting as steps but when is beyond me.
Actually grateful I have glaucoma because treating that has probably put off some problems like you're experiencing.
Sending lots of prayers, thoughts and positive, healing vibes your way. Thank you for your very encouraging words to your viewers. Right back atcha! You can feel free to let your emotions out, while remaining strong. You rock!
Your human, you feel pain and feel down, that’s ok! You are a positive person more than most. Give yourself a break and be real to yourself. If you need to cry, go ahead it will make you feel better in the long run. The worst thing is not being in control, I know especially as I’m a control freak too! Chin up things will get better soon❤️🇨🇦❤️
My husband has the 1/2 an inch ear lower issue as well! And what is sad, I didn’t notice for the first six years we were together. Love doesn’t care!
I have one ear that's lower than the other, too... and, strangely enough, if I mention it in passing, people will mention that they didn't notice it until I said something. (In my case, it's caused by strabismus AKA "lazy eye".)
One of the more annoying things is how sunglasses don't fit on the bridge of my nose very well, so I am essentially forced to be a 'sunglasses snob' out of necessity rather than choice. =)
Totally understand that want for the problem to be fixable by familiar means... Better the devil you know... rather than step ups or step outs into the unknown.
I'm glad at least that you got a clear glimpse of what a shunt may mean in terms of benefit.
Xxxxx
So fucking proud of you facing your fears xxxxx
Bless your sweet moms heart! She is so good to you
Just saw your Instagram post! Good luck and I hope this surgery is as much of a success as it can be!!
I love watching your vlogs! I have EDS, as well. I wish you the best! I go to Cincinnati Children's Hospital for my EDS. They treat adults there, too.
You're doing amazing through everything that's going on and I hope they figure things out for you soon! Shout out to your mom again for everything she does to help :)
God bless you Christina you are such a wise and beautiful soul. Prayers and healing blessings streaming for you . ✨💖✨💫
you're so strong! thank you for sharing your journey. I really hope this works!!
I really have fallen in love with your inspiring stories. I watch both you and Mary Frey. You both are truly amazing. Christina, I appreciate your life story and it is helping me to find out if i have mast cell because of all my reactions. Thank you so much. Get well, soon. And remember no matter what you are chronicially beautiful :)
Sending lots of love and prayer to you and your mom💜 I know she's reading comments too... my mom is a warrior for me as well. It took awhile, but she's got my back😉
Sending good thoughts and well wishes to you. I hope that everything went well and that your Mom is able to get some ok sleep in the hospital. Xoxo.
What a beautiful message you gave! I wish you strength and quick healing.
Lots of love to you and your family. You are all so strong, but I'll be sending love and thoughts for speedy healing.
Completely irrelevant but what happened to ur wings buddy?
You are so strong!! Good luck! I will be praying for and for the physicians involved!!
Hershey is awesome! The Hershey park tour smells just like chocolate! Wishing you lots of love ❤️
I watch your vlog and want you to know I care. I am a cancer survivor, one year from diagnosis and ten months post treatment. I agree wholeheartedly that attitude is everything but that a range of emotion is normal. Since you read your comments just know your in my thoughts and prayers. I think what you face is much more difficult than what I have been through even though head and neck cancer is no picnic. Rock on my dear, and joy is what life is about. You got that right!
I love your enthusiasm! Please send my hellos to your Mom and I hope your surgery goes great!!!
lol Candy!!
I'm starting to see all your elephant stuff!! I'm so jelly!!! I foster a big boy at DSWT named Namalok in my Dad's legacy. If you've never watched their videos they are amazing creatures and what they do for them is humankind at it's best! Have a good 4th!!!
+Marie Laveau That. Is. AMAZING!
My Mom had to have a spinal tap done 2 different times and with both she had a spinal leak and severe headaches. I don’t know why she had the first one , but the last one was to to see if she had been misdiagnosed or not with Parkinson’s. We had been fighting with her insurance to cover the procedure and they kept saying it was experimental which it wasn’t. Long story short they remove some spinal fluid and if she has any improvement in her symptoms it’s positive that she has a condition that causes abnormal hydrocephalus pressure. Because they messed up the test and she had a leak that brought on more problems the hospital didn’t record that there had actually been some improvements. She was also having mini strokes and not telling us because she didn’t want anyone to worry about her. She didn’t understand that seeing her suffer from so much pain and being trapped in a body that didn’t work right was killing all of us and especially Dad. He always thought he would die first. She was 82 when she died in 2011. He passed this past February at the age of 92.
I'm glad the hotel was able to accommodate you! That would have been so awful to have to find another hotel.
Always In my prayers!! Omgoodness, I loved the gown! I will definitely order xo
My ears are crooked too!!! So awesome one of your nurses has EDS! Best of luck on your shunt (sp?) surgery. Congratulations you made it through another week!!! 💪🏼❤️❤️❤️🦓
You are so amazing. Attitude is everything, especially when faced with unpleasant tasks.
You are amazing and i love how you stay positive. and i hope you are able to go home soon.
Erg! I have a spinal fusion & I just watched the part about the night table. I reenacted the reaching to the nightstand, and pulled something in my back! Dang, you were SO right!
You always cheer me up and inspire me ❤️❤️❤️❤️
Hershey is where I was treated for cancer in 1994! I have such fondness for the hospital and the area; I had to go for yearly checkups until I was 18 and I got to go through the chocolate world tour almost every year as a consolation lol. Also, loved your speech about positivity. My therapist has had to tell me several times that emotions are neither positive nor negative, they just are. We need to allow ourselves to feel them, all of them. ❤️
Thank you for always being so open and honest about how you are feeling, I am so glad that you feel able to do that. Sending you so much love and I hope you recover from these procedures quickly xx
From Harrisburg pa, right outside of Hershey. No factory tour available you can do chocolate world though. It has a ride that gives a general idea of the factory. Also they took the factory out of the us I think. They knocked down the factory just recently.
you are amazing your so strong and with what you deal with daily i pray the lower lumbar shunt works for you cause the bp sounds scary to me with what your surgeon said i pray this works and you are doing great with the laying flat i pray this works and you feel some relieve sending hugs from uk
Really love watching you❤️
Uggg I feel your pain I can’t lie flat without my throat getting completely burned with acid, and I can’t even lay on my back propped up anymore because my arms go numb🙃
Just wanted to say also that when I’m super sick watching your videos makes me feel like I can make it through however many days I need to get through, thank you as always for being so informative and real, much love and I hope you get relief soon
Christina, I have a shunt! I promise it isn't as terrible as it sounds! I have hydrocephalus and it works well to treat it. I'll be thinking of you!
first time seeing your channel, but I am glad despite everything you're still doing the best you can! Keep fighting on, you got this, sending much love and support, hope everything becomes a lot better very soon!
Boy, what a week! Surgery is necessary, but never fun(unless you're a surgeon and not the patient). I'm glad you know what's going on and that you have a plan as to which way you should proceed. I was primarily tube fed until 2012 and have been on TPN ever since. I do get thirsty, but haven't felt "hunger" in so long, that I honestly don't remember what hunger feels like. Is the gastroparesis the only reason you don't eat? If so, ask your doctor if you can try very small amounts of hard candy, popsicles, or stage 1 baby food applesauce. If it's okay, you can get a small leg urine drag bag to hook up to your gtube when your feeds are not running. All of the above drain out fairly well that way and in my case, it was enough for me to be able to enjoy a little bit of "food" without making me deathly ill. I can't speak for everybody, but the one thing people say all the time to MCAS is that we are always happy and handle our illness so well. I don't think that is quite accurate. I think what it really boils down to is that strong emotions either way on the spectrum cause mass cell mediator release and make us sick. So, to prevent that from happening on a daily basis we learn to suppress strong feelings as much as possible giving us the appearance of always being happy. Unfortunately, using this coping method makes others worry about us terribly when we do have down days we can't suppress. I'm sending hugs and healing thoughts your way! Hang in there!
Sarah Schondelmeyer she has the tube because of mast cell activation syndrome and swallowing issues, not gastroparesis
I have a medical bracelet and I love it x
Im praying for you! I hope everything is well! You are a very strong and beautiful person that can get through anything! 😘💜💙 girl on the train is a very good audio book! On audible
In 85 went I was born I was 3 months prematurely born...I live an hour from Hershey I was life flighted there to have heart surgery to get the chance at life! I’m 33 now and have a different set of issues (Ménière’s Disease) but I always say God saved my life at Hershey Hospital! Good luck. God sees everything before it happens and will keep you safe. To bad I can’t drive anymore or I would visit!
Wi just ran across your video by accident today I love the way you are sharing your story.I have binged watched you all day.I started to suggest you watch the Frey life until I saw you open a package from them.I have a lot of medical issues as well,plus I have been a 24 hour a day caregiver for my husband.He had poilo (me too) as a child and 25 years ago had a major stroke he can not walked or talk(he can say a few words.Enough about us,we will be praying for you each day.
There was soooo much I could relate to in this video. I don’t have EDS, but I do have a few other neurological conditions. I managed to avoid a lumbar puncture until I was around 19, and I went in for the procedure, the doctor looked at my back and the imaging and said “nope.” So I half one done with CT guidance. Except that doctor still didn’t want to do it in my lumbar spine because he couldn’t find a place that he felt was safe... hopeful me was thinking that they just wouldn’t do it and we’d have to figure out some other test instead... nope! He decided to do it up in my cervical spine (neck) instead. It wasn’t terrible, but I could “hear” when he punctured the dura, followed by one of the providers in the room saying “Woah!” I guess the pressure was so high that the CSF literally came out full force and hit my doctor’s gown and got everywhere. Funny now, but not so much at the time. I’ve had a VP and an LP shunt before, individually and at the same time, so if you end up getting one, I wish you luck!! It’s really not as scary as it seems. I was more upset about the patch of hair they had to shave off than I ended up being about the surgery.
Anyway, I don’t blame you for being extra cautious and doing everything within your power to avoid a CSF leak. I had one as a complication from a surgery (not a shunt one, something totally unrelated) and it was one of the most frustrating things I’ve ever been through. The headache you were describing sounds very similar to the headaches I would get when I had the CSF leak - but I only got one when I sat or stood (and the longer I was up, the worse it would get) and laying down made it go away completely.
Enough about me. Good luck with whatever ends up happening! You got this.
My friend jacked a pillow from the hotel we stayed at once, he was all “this is the best pillow ever” next day they charged his card $100 for the pillow he jacked 😂😂
😂 bahaha a good pillow is priceless
Been praying for you constantly
yes, that is a great dress. Feel good that I am soo very jealous of you wearing a cardigan in July! at least you got that:)
+Elizabeth Decker I will almost always be wearing a cardigan or something 😂 the dun touching my skin is not a favorite sensation of mine
Complementary rocks. Yes, it's a thing. 😉
Can't go wrong with Bowie :)
I'm sending out positive vibes for you and hoping you find answers and hopefully solutions soon. Also, I love the phrase "Modest is the hottest." 😂😂😂
Hope you get better soon💞
My sister had a shunt put in her brain because of high pressure and fluid build up or something like that (I can't remember all the details because I was a little kid) but the first surgery didn't work right so she had to get a second shunt. That was over 13 years ago and shes doing really well still and so is the shunt. She's never been diagnosed with eds but looking at her medical past it seems like that's what she has... I think you'll be fine if you get the shunt and hopefully you'll get relief. Praying for you ❤
What your doctor said about EDS patients doing better on lower pressure makes so much sense. When I had my CSF leak last year, my opening pressure was 16, which of course was within normal range, but high. After my blood patches, I felt so much better, and this information makes a lot of sense on how pressure affect EDS patients. Do you know you can download audible books to your laptop/phone/other mobile devices?
Sending lots of love darling xxxxxxx
I saw your facebook and insta post, im so glad things went relatively well!!! Now if they can just get that pain under control that'd really be a game changer. I prayed for you and wrote your name in my prayer journal so hopefully sending all my love and light from Nashville, TN will make even the teeniest of a difference ☺️. I have been avoiding EMGs as much as humanly possible for the past 10 years and thursday makes the 3rd or 4th (they've been so traumatic I've blocked them out i think lol) and I'm actually terrified. The worst part is that ive done it before and I know what to expect and how much it hurts so I feel like I'm walking into the fire with my eyes wide open and nowhere to run for sanctuary. But, like you and Mary say, I've got to do what I think I cant do and be brave and find the positive. Anyways, I hope you can get some rest tonight (if not, feel free to message me on instagram, I'm spoonieswift91) and that they get that pain under control as well and as soon as possible 💜 Sending you all my gentle hugs and prayers!
+Mandie Zangora That was 100% how I felt about the angiogram! I knew what to expect and that was worse. But it ended up okay. You know you survived before. But yeah... EMGs are no fun! Best of luck! Go to your happy place! ❤️
I hate myelograms. I had a spinal leak after mine and had the worse migraine from that. 😭🙏
I live an hour south of Hershey!
I haven't finished the video yet, but I went on your facebook page and came across a comment saying you're being seen by Dr Liu. It's insane how small this world is. He placed two of my stents for my intracranial stenosis/chiari/pseudotumor cerebri in 2016 and 2017 while he was still working in Virginia. When I saw him in 2017 it was right before he left for PA. You're in great hands and I hope you recover from your surgeries quickly.
+Nicole Bryan Thank God for Dr Liu!!!! 💜
I see the same vascular neurosurgeon. Love him! He put 2 stents in me almost 2 years ago.
My tube does that too. I'm so glad to knows yours does it too cause I thought mine was messed up or something 😂
The government has told us that we must prevent blood clots in the hospital or the hospital gets paid less money. The doctor has to choose 1 of 4 options for everyone admitted 1.) patient walks frequently nothing needed. 2.) pt walks occasionally or blood thinners are contraindicated so Sequential compression devices (SCD’s) are required. 3.) patient rarely walks or SCD’s are contraindicated and patient needs blood thinner shot. 4.) patient at very high risk and not mobile and both SCD and blood thinner are required.
The compression devices stimulate circulation in your legs that is similar to walking. You should see about getting them for home!!
Hey Christina, I think I have a solution for the pressure sores you are getting on your collar bones. Try getting some molefoam and making 2 pads (4 all together) to place on the c collar on either side of where it touches the collar bone
I have EDS and ashthma. I am super allergic too alot of things as well. A month or so ago, I walked into a restaurant and I only lasted 5 minutes. They used clorox clean up of all chemicals, one of the only.chemicals that will send me into an immediate ashthma attack. My hubby and I were supposed to meet some friends there and I felt horrible because I couldn't stay. I've had to switch rooms in hotels because someone had smoked in the room.
I live about 10 mins from Hershe
Yes i been following u since ur 4th video.seeing all ur videos helps me but man u got a great support...i do not.idk how to do it with no one but im wishing u great recovery
I know this is an old video but the second you said ampules i was like I TAKE THAT ONE TOO xD
Wonky ears can be super annoying if you wear glasses. My ears are uneven up and down and front and back. I had an optician tell me he could fix my problem by removing one ear and gluing it back on to match the other one! At least we could laugh about it - not much else we could do. I miss him now that he’s retired and his replacement doesn’t have the same sense of humor. 🐾🤓🐾🤓🐾💖
Ever since I had my spinal fusion for scolosis 8 years ago I have never been able to sleep on my stomach with only one pillow. I now need two. I've never really known why I can't get comforable with just one anymore, but I'm curious if it is because my spine can not longer sink in as its fused straight. That would make sense. Not sure what i would do if I was forced to sleep with only one pillow under my head. ❤️
Hang in there, girl.
Thanks for validating the hospital drug schedule struggle. I really struggled with a combination of boredom/restlessness while in the hospital last week and on a boat load of steroids, also having not a lot of energy or mental fortitude to do much. Any brain occupying or time taking up ideas?
+tyler bennett I messed up leaving my projects behind lol. I like to create. But audiobooks have been my savior! Although I may have just amazon primed some paint markers to my hospital room to decorate some stones
😂
Can you explain how feeds can go into your lungs? I'm pretty well educated on feeding tubes from you and a few other UA-camrs, but I haven't heard of feeds going into your lungs before. btw I love how real your videos are!
+Allee Shirrell Well without getting too medical or patronizing, we all have a little flap that decides where the food and air end up. Even if you were to eat laying down you would find it feels easier to choke. But with the feeds, since they are fluid, its easier for them to come up and pool in the wrong place and that increases the chance of you breathing some of it in. If not that it gives KILLER heartburn. It just doesn’t belong in the chest and throat. So thats why you have to always be elevated, especially us with EDS because that flap is extra floppy
After my Spinal tap I had to lay down flat for 24 hours. that was horrible. I have scoliosis and my spine is bend and because of that they had to do that 2 times in a row ( 1st time they stabbed into the wrong spot). I had no anestesia or something else. And the pain was excruciating. Hopefully I will never ever have to do this again
I’ve been following you on Instagram and have been thinking of you.
You would be in so much trouble medically if you lived in nz. So glad that you don’t!! You have access to great care and good specialists anywhere over the USA!!
Hey Christina
❤❤❤
Took me 3 weeks to heal and stay lying down and still leacked
What meds do you take?
The pulling tube thing is so annoying. I always wake up in the night from it happening & have to eat a cookie
My face is crooked too
I have a love/hate relationship with steroids.
Tammy Rowe-Wallace Same...i have MS and steroids are my lifesaver....sometimes they cause lots of pain sometimes they dont...i always hope I don't need them but one never knows
i don’t think that you are all that crazy to have laid flat for 3 days. i have Idiopathic Intracranial Hypertension and now we are also looking at a connective tissue disease. possibly EDS. and every single time i’ve had a spinal tap i get a spinal leak and had to go in to have a blood patch. and i always lay flat for at least 24 hours.
Ignorant question I apologise! Why would the carpet smell affect you and wouldn't a chocolate factory tour be overwhelming with smell, too?
+Amena Divine Yes. But I cannot really control what I react to. Thank GOD recently I have really tolerated food smells better. Ever since starting a new medication. Im so lucky. But chemicals are a different story. Im still very sensitive to certain cleaners. Its even a common issue with normal people. But they actually used a pretty natural cleaner! I was really pleasantly surprised
27:25 like war
Dare To Be Kind by Lizzie Velasquez
Why cant you bring your own medication and convince the doc to let you have it?
If you put on a fake moustache and gold teeth you could go to Halloween this year as post Malone
Luke Petersen oh look you don’t even need a costume! You have rude keyboard warrior in the bag.
TheKmhendri dude post is a beautiful man
you could tell that the steroids were reacting poorly because you were very aggressive when you checked in prior to the procedure. 😔