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Vlogging with EDS: What is Wrong With My Brain? | Week 84
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- Опубліковано 14 сер 2024
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Even warriors get tired, you're entitled. Peace be with you.
My 17 yr. old Granddaughter has been diagnosed with Addison’s disease. She almost died and a wonderful Dr. had an idea and figured it out ❤️‼️This disease is very rare. She takes Steroids daily. 3 pills 4 times a day and a couple others also. She takes her last dose at 8:00 pm. I’m so proud of her. She Graduated last week from high school and she works 26 hrs. a week also starts college in 2 months ❤️‼️It is not easy for her! I’m just so proud of her💜‼️ Christina she’s tough just like you 💪🏻💜‼️
I'm a night owl too. The sunlight makes me sleepy, and I think that's just how I was born :P
I hope you'll understand in the wisdom of a 40 yr old EDSer with Craniocervical instability, spinal instability,and shoulder, and pelvic instability; I physiologically understand the symptoms you speak of in your videos.
It feels like symptoms run life at times. But then they do.
Stay strong at heart.
Please take to thought the possible SEVERE repercussions of not going ahead and having your shoulders stabilized.
Christina, you're among the first generation to receive surgeries for preventing further severe EDS breakdown in the body.
That's along with tough experimental surgeries, and maybe even more.
I think you're doing a great job with your videos!
I just started watching them recently.
Be sure to keep believing in yourself.😊
Sometimes symptoms feel never ending, but in knowing the horror and damage unstable shoulders and an pelvis cause; I'd like to urge you to seek your physician concerning your shoulders and pelvis in your twenties as you observe where your body 'pulls' at its own self from.
I wish you blessings and good health. 😊🌼
I got brave enough to do an Ehlers awareness video for EDS awareness month on UA-cam, and have been working on beginning a series.
You can Search:
Ehlers Danlos (Living the Fight)
I enjoy offering knowledge I've learned through my own bodys extremely odd symptoms (with EDS); to anyone truly interested.
Fight on!!😁🌼🍀
You are very sensible to have your mum with you when you are at the end of your patience and won't retain information or stand up for yourself xxxxxx
That weather and change in air pressure must be contributing too, how wonderful Trish is for you, I'm so pleased she is in your life xxxx you are right, stabilise yourself round the clock THEN start rotating and staggering your schedule xxxxx
Try not to worry about the big decisions every single day, the big stuff can move to the back of your mind while you experiment and monitor the cortisol benefit and response and decide what works best xxxxxxxx
So glad u don't have a blood clotting disorder. I have a rare blood clotting conditions and had multiple clots and I do daily injections myself Been 11 years I been doing this so for.
You are such and inspiration lovely with everything you fighting though. Sending so much healing to u sweet soul xx
Sounds to me that you need to check things out and rule out any brain happenings before anything else...if its not, thats one thing you dont have to worry about, and if it is then surely that is first before a lot of other things...or all your drs need to consult and decide on a plan. Sounds like you have some good drs and their input can be helpful. Im so sorry everything is soooo frustrating and ridiculous! Theres so many possibilities and I hope you figure out things soon and they are a lot easier to handle then expected! Prayers for your amazing beautiful self.
Hey sweetie. It might be time to utilize some community resources like medical transportation, social security, getting an aide at home. These things might give your family some respite or break. I dont have family so i have to use these things. If you need help accessing this stuff we are friends on Facebook just pm me.
Itsnot easy
I’m so sorry you’re going through so much horridness my prayers going out to you and your family. Hugs xxxx
I just wanted to say you are not alone!! I totally am w u on hating making all these big decisions!! Like can't we just pay someone to do That? Idk maybe a Dr? Lol it's just so hard esp bc our bodies are falling apart so we're struggling as is to just form a sentence nevermind make big surgical decisions, in Your case brain surgery!!
I'm so sorry you're going through all of this. Please know you are being prayed for constantly. Sending many prayers, hugs, n spoons!!! 💜🙏🥄🥄🥄
Hi Christina, I’m so sorry you have had to deal with so much lately. EDS seems to give us one step forward and the two steps back. I’m keeping you in my prayers and sending you healing blessings. ✨🦓✨💖✨🦓✨💫
Awe I get this entire week... So glad you found out no clotting issues are there!!!! And per the regular neck brace I had to put stuff in the back of it as well. What I found out that works well is socks! You can food them up and stick them back there or roll them up back there! So glad you got to get out a little! Yes compression sleeves or leg sleeves! Compression is so needed and nice. I sure hope they are able to troubleshoot whatever it is going on .... Awe I so feel for you... As always I really appreciate you taking so much time and effort to put these videos up! gentle hugs to you my sweet friend! 💜
Thanks for sharing the not-so-great times. I usually tune in to your vlogs because of the genuine (not fakey) positivity you have, but I've been having a really rough couple of days and was anxiously awaiting this vlog and seeing you be open about having a rough time really resonated today in particular. More-so than a super-positive vlog probably would have even.
Glitter?! I love glitter! In, and on, everything! I’m sorry you’re having such a tough time these days. Sending you a glittery hug❤️
Christina, tubigrip can be bought for a whole £1.00 in the UK in the £1 shops. I live in it 😀 It's very common and super cheap. So glad you had a lovely evening at the theatre. These times of normality are definitely what keep us going xx
Sorry to hear things aren't going especially great right now. I'm so glad you got to enjoy the retreat the other week before all this started. Hope your doctors are able to figure things out for you. Enjoyed the vlog as always (your positivity and ability to look on the bright side is infectious and always cheers me up!) :)
Keeping you in prayer for all these changes. Praying you get the help you need, answers you need, rest your body needs, and above all, healing in whatever way the Lord brings about. My heart is heavy for you, Christina, but sarahwithstars had wonderful advice there. 🙏🏻💜🙏🏻💜🙏🏻
You are in my thoughts every day in hopes that each day treats you well. Personally, my fibro diagnosis is turning into a lot more. From being told I need to do a tilt-table test (because I also pass out in the shower) to an MRI for my left knee following a bad sprain 2 months ago that still hasn't healed despite physical therapy. I know you are still going through your journey as I am just starting mine. You are such an inspiration to keep a positive outlook on everything. Also - ty for the Theramu code a while back! I bought one of the topical ointments and it has been a life saver!!
My heart always just skips a beat out of excitement when your videos pop up in my subscription box! I have an ankle reconstruction surgery later today, and I’m planning on re-watching all your videos while I wait to go into the OR. love you ❤️
You do such a great job at making these videos! As a mom, I have to say, I am so proud of all of the things you accomplish with the trials you have. You are such a great inspiration!
Watching you make the best of a bad week has helped me feel a little better about my joints deciding to hold a dance party tonight, so thank you. I really hope your symptoms lighten up a bit and you start feeling a bit better so you won't have to jump into another surgery so soon. I'm sending lots of love your way. I hope this week is going better for you.
Hi beautiful, I have that same neck brace. It's wonderful because it doesn't make you so hot. It doesn't give you the occipital support though... Sometimes I wear it with another brace that is also cool.. With the other brace supporting the back area while the small slim neck bace stops forward head movements. The two together are perfect. I've had mine for probably 2 years. It's going strong other than I had to replace the velcro. Anyway I thought they might be useful info for you. Hugs as always. Love Nicole xoxo
Brains are important. Like, really important.
Also, we're there with you!
Sending so much love I hope your neuro symptoms are sorted ASAP x
I look forward to your videos Thank you!
Need say this you have the most kindest of souls every vid i watch you give strength to others through your vids if you can handle and be so upbeat or see the positives even when we know how bad you are feeling you just amaze me i know i can't know what your going through but i always send love and positive thoughts from uk
Omg Christina, that neck brace hack you showed is a life saver!!! I had been doing something similar with mine and a giant ice pack, but as I was packing to fly up and see Dr. H i realized that it has a big ole sticker that says it can't be taken on planes. I've been panicking trying to find a last minute substitute but now I have ideas!
Highly, highly suggest articulated AFOs!
This whole blog was amazing, but the thing I naturally clung onto was the tubigrip - this is so ubiquitous in the UK I'm really glad you found it! We have it in rolls in hospitals and it is definitely my go to for supports and the like. Glad you found something that works for you. You definitely seemed somewhat not yourself at points in this vlog - I hope the solution is as close and painless as possible.
You're lovely to listen to and I hope you're having a wonderful day with as little pain as possible!
Praying for You that You get everything figured out with Your body and find the right Doctor You are amazing all You go through with such positivity
That neck brace hack. It pushes your skull off of your top three vertebrae.
In the UK tubi grip is a pharmacy staple! It’s super great and cheap as chips- i like to put it under braces too as i find it also helps with rubbing! 😆
Praying for you and that you get the answers you need with the least amount of pain and challenges. We have similar issues but caused by different things and I know how frustrating it can be. I know that I am having issues at C1 and the base of my skull and really don’t want to face it because I know how hard it will be if I let them fuse it. Plus my Neuro surgeon retired in January. He would give me a recommendation, but it won’t be the same as him doing it and I trust him with my life as he was the one who has saved me 4 out the 5 times I almost died. It’s been a hard year for us so far, my Dad passed in February and my husband’s Mom passed in April. It seems like so many people are going through so much this year. The depression is real and not being able to get out and about sucks and not being able to socialize makes it worse. One day at a time.
Christina, I LOVE your top at minute 22:00!!
Another amazing blog Christina! I'm hoping for the best for you this week and that the doctors kind find a non-surgery solution to your current symptoms!
I'm the exact same way with my sleeping schedule.
I am forever and walking into rooms and wondering why or what I needed and sometimes I have to explain what I want cause I can’t remember the word so I understand how annoying that is and the headaches I’m so sorry if it isn’t up it’s down but you’ve got this girl you are a true worrier! Also hope to be seeing you at the National eds conference
I love tubigrip, I have a whole stockpile of them from various injuries and for just general pain. I think you can buy them from the brand website, I got most of mine from the doctor or local pharmacy, but idk if that's the case everywhere. Also if you get some fabric paints or markers you can really have some fun decorating them.
Well, it only took me 2 nights and an afternoon to watch your vlog, but I did it! Last night I literally passed out, this morning I had to stop and get ready for an appointment, and now it's relax and catch up time! (You know... watch vids while you wait for meds to take away the pain from a busy day 😉) Don't be afraid of the brain surgery... I'm gonna be going through it soon too. We can be zipper heads together!💜
I watched the EDS TMJ webinar today and was thinking about you the whole time.
Yeah i tried that brace after my accident since my doctor's wouldn't give me a brace but with my occipital neuritis.... Not a good brace for me. Wish o could ship it to someone who could use it or hand it off to Christina while shes in MD to give away. Totally didn't help me at all.
That’s my sleep schedule too girl. I take prednisone and I’m tapering off but I legit have taken it at 10pm or later 😂
Yay I scored the turquoise bracelet at your etsy store. I can't wait to wear it!
Aww Christina I hate that things have been difficult for you 😔 I am praying things will work out in the best way possible ❤️ I totally get that u don’t want to have to make the decisions yourself. I’m the same way! I would be hard on myself if I made the wrong decision but I wouldn’t be mad if it was someone else 🙈
I love that theater! I always went for school!
Good luck! I am praying for you! Also for Lauren!! 💜💜💜Mame!! Love Musical Theatre and so glad you got to see a show before all the hullabaloo gets crazier. It's getting pretty rough for me to and I gotta make some calls I don't want to make for more hospital stays and procedures/surgery idk yet. Are you taking the CBD tincture still? Or just using it on your scar? Or not able to? It may help with some of this anxiety and fear and stress and with sleep. If it hasn't been working, I am so sorry. I completely can tell when I just miss ONE dose. It's insane. I am glad you got your cortisol meds adjusted! When I have big decisions to make about the order my surgeries or procedures are gonna be in, I ask the people around me the most and the people I can talk to and have talked to about it and my family. They can tell what is affecting me more or has been getting way worse and give at least some insight as to what they hope the outcome will be and to give me a support system through all this craziness! I am praying hard for ya girl! Stay strong. You're amazing and you will get through this rough patch too. How is the Pain Journal so far? And I am praying for Lauren too and my sister is as well!
Tamber Grable ❤️
Saying prayers for you Christina. One day at a time...
I have the same issues because of Fibromyalgia. Fibromyalgia fog...frustrating beyond words.
I actually had that same neck brace I love the fact that it has the little pouch that you can put the gel ice pack in to have it on the back of your neck the only thing that I found with that neck brace is that it is not very sturdy I had mine for about 2 months and I accidentally sat on it I think or my husband sat on it and one of the metal rods going up from the breastplate piece actually broke inside the plastic C piece so we try to fix it but it wasn't fixable but I love that brace super easy I was even able to wear it underneath some shirts the winter that I had it so that my children didn't feel as self-conscious about me being at their school wearing a neck brace I also have one that's made out of silicone that you tighten to whatever height you need that when I can actually wear in the shower which I absolutely love and I got it off of Amazon as well
Neurological symptoms that affect sense and thought are so scary ! Like a nightmare! :O
I hope you can get some answers and treatment soon, and then hopefully some damn rest !
P.S. Thanks for your honesty in this vid, I think lots of us appreciate it
I absolutely love the sweater you're wearing around 8:30 !! Do you know what brand it is? I hope you start to feel better soon. You deserve it more than anyone.
Oh sweetheart you have so much going on right now, take a breath things will fall into place take everything to god and he will show you the way I hate seeing you so stressed and struggling. One thought I had was when you said trying to answer texts and stuff with your vision is hard, but have you thought about the apps and things on your phone set up for the blind where it reads out what is on the page instead of you reading with your eyes? I think it should have a thing where you talk and it turns it into text? I saw it on a video by molly Burke and thought it might help? Sending much love xxx
Oh Christina. I’m so sorry you’ve had such a bad week. What can I send you from the UK to help you?? xxxxxx
Take care of yourself hunny!
I’m from Pennsylvania, what area is your specialist from? I have Ménière’s and am always looking for trusted recommendations! Thanks!! You are a warrior.
Do you need a burst of steroids? What you are describing is what happens yo me at the start of a mast cell/adrenal flare.lol
Wait, you guys can just buy tubi grip? In the UK it's cheap as chips from any pharmacy
Readily available in uk. Not sure you’d get the length tho
The site wouldn't let me enter so I was slike oh well. Your feelings on Tuesday was exactly how I feel with my anxiety and one of my doctor is always like, girl you stress me out, get therapist! Lol (one for anxiety)
Paige Davis from Trading Spaces is in MAME!!
I wear to dupport ligaments as well.
I think admist the uncertainties and frustrations of chronic illness it is just important to remember that God does have a plan and everything happens for a reason. ❤️
If only a body transplant were possible, we, as spoonies, would have actual energy and a good fuctioning body! Sending you a very big virtual hug
So why did you have those stoke like symptoms when you were out of your bloodthinners?
Metal Stamping is tough !
Thank you for the upload as usual :3
I wish you could do daily vlogs cause I love you so much!!!!!!!!
I love you & I really love your videos!!😍😍😄😄
Your sister should make her own UA-cam channel too haha! Does she have EDS as well?
I undertnd
you aren’t even taking that much... i have primary adrenal insufficiency and when i was on hydrocortisone i took the average 30mgs. i’m on prednisone now because my body didn’t react well to hydrocortisone well. but i took hydrocortisone according to circadian dosing because it peaks at around 4 hours and starts to fall out of your system... it’s basically completely out of your system around 6 hours.
i took mine like this:
7AM: 12.5mgs
11AM: 7.5mgs
3pm: 5mgs
7pm: 2.5mgs
11pm: 2.5mgs
now i’m on prednisone which lasts a little longer in your system (about 8 hours) so i take it as follows:
6:30AM: 4mgs
2PM: 2mgs
10:30PM: 1mgs
i tried not taking the 10:30 dose and i literally could NOT wake up at 6:30 for my dose. my alarm would go off for literally for hours and i wouldn’t wake up. it’s crazy how the just one mg makes such a big difference!
Hey Christina
I think there are diagnosis that you haven’t gotten yet.
CFS/ME but it’s very very similar to these symptoms. But I have EDS and before my accident I didn’t have any pain or issues at all, I feel like EDS can’t cause all these issues you have.
There really isn’t a test for CFS however until now, Dr Bilstrom has the highest rate of healings in his office for all chronic illness including CFS or multiple sclerosis, and other major issues..
His testing alone is amazing
He took 31 vials of blood, 24 hour spit test, and a stool test.
Anyone who is sick and needs to see him can stay with me so you don’t have that expense
He sees exactly where your at even tests for underlining Possble diseases such as lime, lupus, herpes strains, phenomena, and just all sorts of things (non STD strains)
I ended up having like 5 things I would have never thought of.
hey! My friend is bringing me the three bracelets I ordered! I had you send them to Somerville but I live in Canada now!
ALSO! I have a huge, important idea of how you could feel better. Seriously. Do you have an email I can write to? There's a really good place in Brookline where they can add a much richer dimension to your healthcare. The entire family will benefit.
I swear these god damn Doctors. ridiculous.
Would moving closer to your medical care help? It could decrease some stress maybe--the drives in the car have to be so hard for you!
Janet Losso thats not easy to justt geet up and go
She can’t leave me!