Vlogging with EDS: I'm Literally Falling Apart... A Week of Chaos | Week 63
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- Опубликовано: 5 сен 2024
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“Im not coping well.... to using one hand” GIRL! The fact that you aren’t bursting into tears and cursing the Lord’s name every time you talk about it is amazing! You are unbelievably strong! And what is happening to you SUCKS, and would cause any average human to loose all hope and sanity! You are AMAZING! But don’t be afraid to give yourself mercy, this really isn’t a fun time for you and it’s ok to say you are struggling! Just know you have us, who are praying and thinking about you, day in and day out! Stay strong, woman! ❤️❤️❤️❤️❤️❤️
HeyyBrey perfectly worded!
I agree
46 minutes of Christina?!? Amazing! I look forward to your video every week. Sending all of the positive vibes and prayers your way! ❤️
Anyone watching Sept '20? Is Christina OK? It's been a long time...
I agree so so much. Doctors can't handle complex stuff most of the time. I hide other stuff that still concerns my health but is not their specialty as well, because they just cannot handle more than like 2 things at a time, it's so sad that we have to do that just to not scare them off.
Christina i told u, you are a Superwoman. Pain is a sign that we are still breathing, not the most comfortable one, but hey we zebras learn to live with it. I truly pray that Trish is able to give your surgeon guidance regarding your spine problems and I am so glad you find a team of orthopedics that can come up with a plan for your leg. You know you can always count on me 💜
You amaze me with your ability to stay positive when everything seems to be falling apart. I'll continue to keep you in my thoughts and prayers.
Stopped at 11 minutes and 45 seconds just to tell you that you are amazing. You deserve all of us. You share your life. You share all your struggles. And you do it all with a smile. Hugs and prayers. So hoping your arm is nothing serious but I’ll guess I’ll find out soon since I stopped mid video to comment. ❤️🙏🏻
Oh Christina, I am so sorry this is all happening to you. My thoughts on prayers are with you. Thank you for keeping us up to date.
I wish I could help in some way. I am thankful that you have people helping you advocate for your needs.
Much love❤
Holy crap girl, you are seriously amazing for the way you are dealing with all of this. Sending love and good wishes from Australia xx
Oh Sweetie, (btw, I never call anyone sweetie) my heart just breaks for you. You don’t deserve this ❤️. You are so strong, so brave, so gracious. I admire you so much. Love love love you.
Oh I could listen to that Piano forever! I love it!!!!
Aaaw honey, I did not expect a vlog from you this week. Thank you so much for doing all that work when you are in so much pain and being imobalized. And thank you for sharing your very bad days too.
I am thinking of you every day and sending you lots of love. Stay safe ❤
I’m glad the first test for your knee/leg wasn’t as bad as you thought it would be, but yikes, the size of that needle sounds horrifying. I can’t imagine how awful mast cell reactions must be, but I know I’d love to get rid of a bit of my sinus drainage. The post nasal drip is so real. All the time.
Geesh, when it rains it really pours. Sometimes you just need to cry to let out the emotion (although I know from experience the loveliness of a crying-triggered migraine). It’s a delicate balance.
Thank goodness for braces! Glad you thought of that and it worked for you.
I love your honesty when you talk about choosing to be positive (after the jaw splint issue). All positivity isn’t healthy, but when you acknowledge that it’s hard to be positive and you have to choose it, it’s very admirable. (I hope that made sense, I feel like it went a little rambly.) And, as always, love your sense of humor (“I thought this illness was supposed to be invisible”).
Every Monday evening - in Hungary it's usually the evening when you upload - I'm waiting for your weekly vlog to watch :)
I so sorry your week has been horrible, I’m praying that you’ll get some answers soon and be feeling better. Gentle hugs xxxx
Christina! Thinking about you!!! Hoping next week is so much better! Love you!
Christine, I am so so sorry for ALL you are enduring! I am praying for YOU and hope your day and everything gets a lot better for you! You deserve that so so much! Stay strong beautiful. I’m sending you so so many positive and encouraging vibes☺️♥️
Christina, Hang in there! Life is a roller coaster ride and yours is def got a few more bells and whistles than most - but, you are strapped together and strapped down, your tests are done and your ready for surgery. All good things. And, you've got a great new camera! :)
I am tired today and my joints hurt - but seeing you work your way through your challenges gives me hope to deal with mine. Hoping you good resolutions to these new issues - saying a prayer for your surgery. Feel better soon.
I don’t comment on many videos but I wanted you to know that I am so humbled by your attitude - you are incredibly inspirational and should be very proud of yourself. I hope they find some proper solutions for you soon and in turn get the pain under control, Jasmine xxx
What a incredibly hard few days. I love how you pieced all the times together and made the whole video....it was like a suspense novel...it just kept going on and like...what else can possible happen...there was tears and laughter and suspense and my heart felt like it was gonna skip a beat or burst! You really werent exagerating when you said Literally falling apart.....I was supprised they didnt wrap you like a mummy and sent you by abulance to your surgeon to be put back together. Hopefully the surgeon was only offering pain control for the time being till they can figure out more but Im so glad you have a hospital that works together...how come they all dont do this for complex issues. You keep teaching them and standing up for all chronic warriors...finally something might shift and change in their heads because you didnt give up on continuing to hold your ground and explain things to them so they understand the best they can. Your an amazing beautiful woman and Im so blessed to have found your channel and been part of these adventures with you. Praying that everyone will put you back together again and you will have more superpowers then ever! Love and prayers God bless and guide your journey to the best care and good treatment plans for your wonderful future adventures to include a better level of support, and that you will know its definitely a prayed heard and answered!!!!
I live with chronic illness as well and I so tired. But, I'm inspired by you. If you can keep going, then so can I. You're amazing!
I hear you, loud and clear. I can relate. I’m sending you prayers and positive vibes my dear friend.
Oh wow EDS the gift that keeps on giving. Hang in there Christina I watched a video of our POTS specialist talking about people with EDS and POTS recently and he said he has never worked with a tougher group of people than his EDS and POTS patients. You just proved that is true. Most people would
jump at the chance of pain killing injections and I can't say I would blame them, but you know it's not as easy or as simple as that. I am struggling with my heart at the moment, and my neck, shoulder, lower spine, etc, etc, ect. so I can relate to some extent. Hope all gets better for you and soon.
Oh my goodness what a week. You're seriously so strong, such a fighter & we are all here praying for you and supporting you along the way ♡ I'm sorry things are so crazy right now just keep pushing & advocating like us zebras always do and you will prevail with those answers. Love & God bless ♡
I hope things start to turn around soon, sending my love.
You described a mast cell reaction perfectly. Ketotifen has helped me so much, but mostly by reducing my reaction to all forms of light.
You are so brave. I'm so glad that you thought of using the thoracic extension. And hooray for your mom! Moms are the best! They will do absolutely anything to help.
It truly is hard to find specialists without huge egos. It has taken me years to put together a team of people who work well with others. I am still searching for some.
I am praying for you! It definitely is so hard to stay positive. You are my hero of the day! You have a way of being able keep a smile through everything. 💗
Your such an amazing young woman. You are definitely in my prayers!
It's the Super Blue Blood Moon, Christine! Ha- I kid. Also, I love Final Fantasy X. (:
You are the strongest person I have ever know. I am a very emotional person so holding back the tears is very hard for me. I could not hold them back for this video. I pray for you as much as possible. Love you love your videos.
I had an EMG for my leg too. I thought, that it was pretty uncomfortable, but not overly painful. It's really bad luck, that now you got this spine problem too on top of your leg problem. Feel better soon! Greetings from Germany!
Sending you so much love Christina ❤️❤️.
Ok own up who has the Christina voodoo doll??? What a week! Glad you have a new cool camera at least and hopefully the next vlog will have some plans to help and answers. Sending lots of love your way xxx
Oh, Chrisitna, you poor sweetie...what a difficult week! Praying the Lord's amazing strength and encouragement over you, that you will not feel overwhelmed and that He will bring you answers from a confident team!🙏💗🙏
Oh my goodness! This week was such a doozy for you. You are so amazing, I'd probably have gone insane at that point, especially when your jaw splint broke. Couldn't your dr in Virginia make another and send it to you? Like wouldn't he have kept the impression mold he'd need to make one? Like that sounds like it would be a possibility. You'd know tho, love and spoons for the coming week.
I think we just need to wrap you in Duct Tape to keep you together! So sorry you're dealing with so much right now, I really hope things can calm down soon!
Chronically Carly bubble wrap
You sweet awesome girl , God will always b there for u. And, show you a way.
Stay a warrior
I had an emg in both my arms and my experience was the same as yours, not super painful but it could be pretty uncomfortable. It was actually pretty cool when my muscles would twitch.
I had it in my right arm when I was in college in order to be diagnosed with carpal tunnel. I dreaded it-- I was so scared! But it wasn't bad at all. It was interesting to see everything twitch.
You are a day closer to getting things feeling better :)
awesome long vlog Christina! Hoping things are already improving! thinking of you, sending love and healing thoughts!
I can tell how much pain you are in based on the way you speak. I do that too when I'm in a lot of pain. I hope you can get some relief soon.
You poor girl, I just want you give you a hug. I hope really hope you start to feel better soon. I have a question for your parents actually: what's it like having to put so much of your time and effort into caring for your sick child? I know you love her and want to do everything you can, but I imagine it must be tiring. You're all such great people :)
You are incredibly strong and you deserve all the love and support from your youtube family. I hope it all gets figured out. Sending love from Canada
Thank you so much for sharing, Christina 💚 We're with you. You're not alone, none of us are.
Christina and the terrible, horrible, no good, very bad week! LOL. Seriously, thank you for continuing to vlog through the chaos. You are amazing! I hope the doctors come up with a good solution-not just bandaid injections.
You're such a strong person praying for You that You get the help You need glad You got a better camera than the one You had
Sending you all of the love in the world xxxxxxx
I prayed for you since I saw the Instagram story ❤ lots of love and strength and good thoughts
Sending you lots of love and gentle healing hugs from Seabrook, TX!
I just had shoulder stabilization surgery for my EDS (using an allograft), which has put me down to zero usable arms (can still use my hands at least, just can’t move my arms). Such an inconvenience for sure to not have your arms.
JaimeStylez I have to have stabilization surgery for my shoulder soon... I also have EDS. any advice?
Hannah Dial Where are you having it done at?
JaimeStylez Why does that matter?
Hannah Dial I was just curious if you were going to the same place/surgeon I went to (I went to the Mayo Clinic in Minnesota) because I can’t really speak on what to expect from a different surgeon. Mine was stabilized using an allograft from a donor Achilles’ tendon from shoulder blade to shoulder blade. Is that how they’re stabilizing yours?
JaimeStylez I've read research that said that is a good option for eds! I had surgery to stabilize my shoulder in 2014, and the doctor just said he kinda just attached the tendon(maybe tendon, I'm not sure) to itself "like a tummy tuck" as he worded it (he's a good surgeon, and a nice guy, he just seems to have trouble speaking in medical language to the typical person, lol... There were photos of the inside of my shoulder during surgery, which I think is really cool, haha, and I tried to ask if he had shortened the tendon, or...? So he explained the photo to me in crazy super duper medical lingo that made zero sense to me, so I tried to get him to simplify some, and he just looked confused and pointed at the photo and said, "it's your shoulder. From the inside"... Hahaha... I really do like him, he's just a goof sometimes ;)
Anyways, he said I was "the loosest he's ever seen" (and he's got med students following him around, so he likes to joke around and say "but never tell a lady she's loose!"... If he wasn't caring and really great at what he does, it would be annoying, but I'm glad I got the surgery, it did help for awhile, after honestly being amazed by how much surgery hurt... I think it's a different kind of pain than typical, and my friend reminded me after surgery that the pain would improve and get better... Sounds so silly, but I was so depressed the first day or two afterwards, because I was thinking, "oh my gosh, I'm in more pain!"... I forgot it got better afterwards though, vs most other pains haha... So I'm glad I did it, but it's now pretty loose again, it dislocates more often recently, and I am grateful that my orthopedic doctor is very empathetic and supportive, and he's very skilled and he will learn more about things like eds... He actually is why I FINALLY got diagnosed with eds, one of his med students who observe etc asked if I had eds, and he was like, "well, do you remember how we would diagnose hypermobile type?" and had the students do the breighton scale criteria on me and learn about eds! :)
He still is ignorant on many issues related to eds, so when i saw him (for other joints) and mentioned reading about using cadaver tissue instead for shoulder stabilization, since our collegen is defective, he looked at me like I was a weirdo, and was like "you know that means a dead person's tissue? Why would you want that?" haha... But I explained again that I understood, and that I had read research about it and it made sense because eds means defective collegen, and he didn't say anything else about it that appointment, but I saw him again and could tell that he had done more reading about it, and it makes me happy, cause he also teaches so many students, and he even will ask me to explain things to med students (some pay great attention and take notes and some don't seem to care, but even if a third of his students learn, that's awesome!)
I hope your surgery goes well, and recovery is as smooth as possible!
Christina, I am so sorry you are having such a hard and difficult time. It will all be ok. I'll keep praying for you. ❤
I was surprised to see a video from you -- you have so much going on!! I am so relieved to see progress being made and hope you find pain relief soon.
I have chronic migraines (daily, persistent pain, as well as attacks), as well as my sister, and we throw a lot of medication and other stuff at them trying to make them ease up. Sometimes it's not about stopping the consistent pain, it's about bringing it back down to a manageable level so you can just function again.
💕Sending love and prayers💕
Christina, I'm in VA, can I pick up the splint for you and mail it??
5545555!
@@melanieshifflett7758 ?
Praying hard for you, may God provide all you need, maybe you have a good weekend! Blessings and keep sharing = caring! Also if you don't already do it maybe pray together with those you love, it can be so empwoering, sometimes Church has a healing service and/or mass, it was always good for me. Hang in there.
Whoa! Whadda week! I am praying for you!
Sending you my love 💜
God bless you from a fellow EDSer 💕
I’m so sorry that so many things have been going wrong :( You are one of the strongest people I have watched. I really hope that things start to get better for you soon ❤️ So glad that you found a better brace situation x
When I got my EMG it was very painful and my legs aggressively jumped off the table. I was so much less amused than you 😂My neuro was like "uh so your reflexes are more than twice as strong than they should be..."
I missed you, I have been waiting for this since Tuesday!
I really hope things are working out this week! I completely understand hiding your arm so they Didn't see that was going on too. Cause some doctors are like that. I hate when they send you to someone else cause we're (complicated cases, enigmas, medical mysteries and my fave to date is when a palliative care doctor said he would need alcohol in his coffee to go over my chart....makes me feel real comfortable...NOT). I'm frustrated for you! Thank God for theramu!& the code! What are your mouth splints made out of? They shouldn't shatter like that, that's weird. Glad your dad could help with the broken brace. I'm glad you can protect your jaw in the meantime! The ultrasound seems like they saw what's actually going on! Awesome! I hate that they view our spines when they're immobilized so they don't see what we are experiencing daily. I've been there where you gotta take a break for you! Let me know when you're back open cause i want a locket like you made for my sister, for her christmas present she loves the little zebra and spoon charms!. She put them on cord and saved them haha (= (the pill locket has already saved her a gazillion times-- thank you so much and she told her boss and he thinks its great!). Genius plan Christina! Hope you're getting answers this week! Gonna go check your Instagram! Love you hope youget to use you little lucky rice sock for a handwarmer on your drives! Love to your Mom she rocks so much! 💚💚
Omg that watercolor is amazing
I'm so sorry Christina! Lots of prayers for you!!! My heart goes out to you and all the pain you are going through. I hope your humpty dumpty body can get put back together a little bit soon.
virtual hugs. I'm praying you get some answers
You are so strong and amazing and yes we love your long vlogs sending you lots of prayers hugs from uk
Wow and I thought I was some ruler in the bad luck kingdom, but I think you need the crown😂 all jokes aside I hope this all gets figured out and fixed. Sending you my prayers all the way from the Netherlands!💐
When I had my emg done I actually uncontrollably laughed at the feeling and the tech had never had a patient do that before
You're one of absolute favorite youtubers
Couple of questions: what do you use the saline fluids for? (Maybe what conditions or symptoms) and how did you go about the process of getting it prescribed (or whatever else has to be done!) Thanks!
I'm so that lucky that I've been able to completely avoid any and all invasive spine treatments / procedures, even though I have severe scoliosis (50+ degrees, R thoracic & L lumbar) and (what I suspect is) a connective tissue disorder.
My doctor (who was an assistant professor at a major research university AND in charge of a fellowship program at the time) for one of my other medical issues gave me some insight for 'playing the health insurance game' (I don't know how else to say it nicely) that I'd never heard before:
(1) Insurance is less likely to question / deny things coming from a hospital patient.
(2) Hospital outpatient clinics are NOT the same thing as being "in the hospital". (I've since learned / figured out that Medicare payment rules encourage hospitals to keep Medicare patients "in the hospital" "under observation" on "outpatient status". There's lots of RUclips videos on the Medicare inpatient status vs. outpatient status. I can only guess that it, or something similar, likely applies to non-Medicare patients, too.)
(3) Apparently there's a permissible way to order a test-- diagnostic labwork involving blood, in my case-- through a hospital BUT the patient has to be made a patient of the hospital (on paper) before that can happen... (???) We ended up not having to deal with that red tape, but my rule-following doctor and I were considering that option after insurance sent me in circles and then totally ignored his faxed prior authorization requests for what I anticipated would be (and ultimately was) approx $5,000 of labwork.
Christina-- Maybe driving down to your neurosurgeon's hospital and going to the ER there might be the might be the fastest / easiest / most efficient way to get the 'loose hardware' problem resolved?
I say that based on (1) my 'insurance insights' above, (2) my observation that your editing more-or-less implied that the hardware in your neck is getting looser by the day, (3) the reality that surgically-placed hardware probably requires a second procedure for any sort of adjustment or replacement.
All of that, plus my own personal research indicates that 'the powers that be' of healthcare are finally starting to change things so that organizations and professionals that provide quality and preventive-type care are starting to be rewarded for their actions while those who emphasize quantity and have high rates of 'dumb mistakes' / preventable errors / "never events" are starting to be penalized for the things that should not be happening.
Of course, my above comment doesn't take into account lots of things... (1) Your vlog was 46 minutes long and a week is 10080 minutes =) , (2) Traveling is very complicated, (3) It is January, so you / your family might be dealing with a deductible =( which means it could be a money thing =( , (4) rescheduling appointments that are important for treatment / getting better or are simply important to us can be extremely disappointing and/or 'mess up' a lot of other things... I could keep going, but I'll stop there. Either way, I have a suspicion, Christina, that your super fantastic mind-body awareness and intuition are helping you and Trish keep you in one piece and functioning as much as you seem to be.
Thank you, Christina, for sharing your story through your weekly vlogs! I know it has helped me better understand 'my normal' that happens to be not-so-"normal".
Hope things get better. Hugs
Zanarkand ❤️
Hope next week is better for you
I have 7 succulant plants thanks to ur addiction to succlants and i have gene testing and a nero apoint ment and i start pt for tmj soon
With the laptop/video editing issue and only having one arm available, do you already use a USB mouse by chance? If not, I recommend trying that out. Amazon should have them for like $5-$10
I have the same pants that you wore on the MRI day
Long vlogs, yeah! I hope you start doing better soon.
Sending you lots of love from London xxxxxxxxx
I had an EMG done on both my legs and HE went clear up like into my glutes! (Talk about feeling violated! And the pain and soreness afterwards...oh!)
Christina tell your friend that she played amazing.
I love your piano playing. I used to play, it's limited after SCI, but going to keep trying. Are you still able to play?
Praying for you. Stay strong love kayla
Hello, and God Bless! May I ask how old you are? You are going through so much. I'm so sorry. Here's hoping for good luck to come your way!
I hate needles and when you talked about the size and how they had to insert the needle I nearly became flushed.
Hey Christina! Sending you so much love! I hate to sound preachy or pushy, but as a fellow EDS patient, there is a bible verse that really helps me. It is Romans 8:18 and says that "the pain you are feeling cannot compare to the JOY that is coming". It gets me through the hardest pain days. You inspire me to smile through tough times and I hope things start looking up soon
Do any of you also have alopecia? Im just wondering if this is common with EDS. 🙁
AnnetteLamour I have alopecia and I have EDS type 3!
hey i know this is kind of late, but i have an immobilizing shoulder sling that has the pillow that goes against your waist. if you need it, please let me know.
i know youre trying hard to be positive but i promise you it's okay to just lose it sometimes
Sorry you have had such a hard week. I'm always open to talk on facebook if you want to vent. Hang in there.
36:27 ❤️
Hey Christina! Just wanted to ask about the CBD products you use. I also have EDS and my two main issues are chronic pain and fatigue. How has CBD helped you if it has and what brand do you recommend? Thanks and go zebras!
Love u too
I've been having chronic pain for about 2 years in my joints and I have no diagnosis but I think I may have eds. Eventually I have to get my wisdom teeth removed, and I'm worried about nerve damage since I don't heal well. I don't want to cause more pain to my body if I don't have to so I'm having a hard deciding whether to go through with the removal of the teeth or not. I don't have any pain from the teeth now but they all sideways pointing into other teeth. I have minor tmj as well which I don't want to make worse. Have any of you with chronic illness had your wisdom teeth removed and what was your experience? This is unrelated to the video but I don't know any communities who have chronic illness who I could ask about this.
Insurance makes you try injections first. Same thing happened to me.
💕
I'm not trying to minimize anything but just remember, "This too shall pass"
"hugs"
I enjoyed this Vlog cause it was long but the RUclips Creator in me couldn’t help wondering how many years it took to get it uploaded 😂 #ItTakes6hrToUpload5m
Is it okay to email you?, I have some questions about POTS, EDS, and some related things
:( like wise.i wish i could offer u comfort
Trish needs to talk directly to your neurosurgeon not the nurse, in my opinion. You need a straight jacket. Haha. Just trying to make you laugh. I hope you get answers soon and it sounds like you found an awesome orthopedic surgeon.
God will do what is needed sometimes he has to empty your hands before the best things can come to you. I'll be praying for you.