Vlogging with EDS: Aladdin, Shunt Troubles, and the EDS Learning Conference! | Week 92
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- čas přidán 8. 09. 2024
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Wow guys…what a week. I. Am. Exhausted. But I am so GRATEFUL to have done all that I have and met all of you that I did this week! I hope to meet more and more of you guys someday! But I completely understand that so very many of you are just trying to raise the money for surgeries/treatments or can barely travel from one end of the house to the other; So traveling to a conference is out of the question. That is okay! I have been there! So please don’t feel too badly if you couldn’t be there this time. All of the lectures will soon be available online and I hope that through my vlog you are able to get a little peek into the rest of the experience! I know that this video may be a little all over the place, and that is because I WAS a little all over the place. I ended up with a lot of footage and very few explanations. I apologize for that, it’s a hard balance to try to video things while you are also trying to listen and live in the moment (Plus the body just wasn’t quite functioning at full capacity this week). But I hope you can find enjoyment from this video anyway. I will likely be sharing more of the details of what I actually learned over the next few weeks as I have had time to rest and process it all.
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I had my first neurosurgery with Dr. Henderson as you were at this conference, and I'm watching this two weeks later as I finish knitting a hat. I haven't been able to knit in over a year! Your videos have provided so much advice and comfort for myself and my family during this crazy time in my life. I really hope I get to make it to the next conference! And shout out to that neuroradiologist. He did last minute imaging for me and even got on the phone with insurance the day before my surgery to help get it approved when they tried to deny it at the last minute. He and Dr. Henderson would not give up, and I am truly thankful for that. This surgery has already changed my life for the better. I am amazed at how far these doctors will go for us.
Such a great video!!!! As always!!!!
It was such a pleasure meeting you at the conference! Your and Bonnie's moms were so sweet and greeted me every time we saw each other after the first evening of me sitting at your table during lectures/dinner. Looking through the pictures at the zebra rally, I realize I'm not in any of them because I ran behind the scenes and gave the camera men my lens to shoot with! I hope to see you again next year in Nashville!
You are so sweet and strong! Keep on being an overcomer! It was so great meeting you. I can’t wait to see you again at the next conference! 💗
Before anyone looks down at their wrists or feet and becomes alarmed, it should be noted that Piezogenic pedal papules occur in about 80% of the population and the vast majority of those who have them have no illness.
THIS IS IMPORTANT I didn’t get to go into this enough. Thank you. Yes, things like papules, stretch marks, flexibility, these are all things seen commonly in the general population. It is only when you start to see an unusual number of these red flags along with the main criteria that you should start to take action.
You are absolutely wonderful. I am grateful for YOU!
You look wonderful. So lovely to see color in your cheeks and a smile on your face, enjoying life like a 22 year old should🤗🤗🤗💗💗💗
Glad you had such a good time, you looked Amazing !
i know how hard a week it was for you, you always amaze me how strong and positive you always are even when your feeling the worst you always think of others before yourself will go out your way to help friends and i wanted say you are truly such a caring person with everything you have faced im in awe of you xxx
You've inspired me to start crocheting! I've only been doing it since Friday, but it's already helping so much with my stress and anxiety levels. So, thank you for being wonderful!
urusai01 ...same goes for me!🤗 I made a rectangle😂😂😂 it's technically a placemats. Lol. I really want to make a blanket but i5s so expensive. I do enjoy just mindlessly doing stitches.Enjoy! I hope you make something lovely.
Right? It's so relaxing!! I've been making squares and I plan to make it into a crocheted quilt kind of thing. But I really want to work up to the sunflower blanket that she made, but circle crocheting is soooo much harder
urusai01 I agree about the circles. I was going to make slippers...nope!😂 I would love to make that sunflower blanket. Did she share her pattern? I feel that's still above my ability. I also find it harder to use the smaller hooks, even the ergonomic ones. If it's not jumbo, I have trouble. Do you have that problem?
congratulation Christine.
Your speech at the end honestly brought me to tears. I've said it before, but you are such an inspiration! God bless you, Christina
You are beautiful inside and out. Thank you for all that you do. I’ve spent the past 18 years getting mystery diagnoses and being told I was too fat for EDS so I just must be hyper mobile, bruise easily, have soft skin, have pots, mast cell and the list goes on.
Still looking for answers but I ALWAYS get excited seeing your videos each week. Hugs.
Btw: my brother has a shunt and has had several revisions ❤️❤️
Great series, very inspiring.
15:26 absolutely killed me you are to great girly! 😂😂😂
You are a warrior and beautiful. I will continue to pray for you. P.S. love love all your bracelet s. I too wear many. Keep fighting.
that song made me cry
that video montage made me well up XD xxx
So glad I found your channel. I follow you on Instagram. Sending lots of love your way ❤️🙏
Bonnie's vest is kinda like Mary Frey's previous vest.
I wanted to say how great it was to meet you at the conference (young adult meeting). I hoped to talk more, but could tell you weren't feeling great and had tons of other people around you. Hopefully we will see each other at future conferences! Anyway, thank you so much for taking the time to vlog about your EDS experience. It has helped me so much since getting diagnosed last year.
P.S. I'm still trying to recover from the extreme exhaustion. I stayed for the rarer types day and flew out on Sunday night... So worth it, but incredibly tiring! I go back to work tomorrow, but still feel like a zombie!
Hey, DM Orthotics (the ones you referred to as compression garments at 17 mins)! I was recently fit for the DMO suit to stabilize my joints!
You are amazing and very strong. I have been told I have somatic for over 20 yrs. I have finally been diagnosed with EDS. I am 41 years and had so many symptoms and have moderate scoliosis. I finally found a doctor that cares and had an xray of my back. I live in New Zealand.
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My sister and I have the papules one wrists and feet which we didn't know what EDS related! Crazy! Glad you got to go to the cpnferemce! It I could go next year I would be so grateful but we will see what God has in store for me. It's far seeing as I am in California...but I really hope and pray I can go because Nashville is on my bucket list! The Grand Ole Opry is on there and it's in Nashville. Glad you're week at the conference we good even if you had to rest a lot
I have one of those papule things in my neck! (I think. But as soon as you started describing it I was like “OMG THATS WHAT THAT IS?”)
Thank you so much Christina for taking us along to the conference. It was great to have a peek into it. I so hope to go next year and it would be lovely to meet you in person. Your ending comments on how EDS has enhanced your life and how greatfull you are for all you’ve learned from it is one of the reasons I love your beautiful spirt. You are such a light in a sometimes dark world and I always feel encouraged after watching your videos. Love and blessings to you. ✨🦓✨💞✨💫
Goodnight Christina! Perfect most positive way, with such heartfelt words to end this
Blog ! The experience, the friendships, and the fellowship is priceless I’m sure!
Your an amazing person Christina, I wish you a future filled with all the love and laughter in the world. Till next time.
Love your vlogs each week. You are so amazing for what u do.
wow, those finger splints are pricey!
I'm so happy you got to go to the conference despite all the challenges to get there. What beautiful connections you have made with the youth there. Other young people will truly benefit from your friendship, insight & knowledge❤
I'm lying here stuck in bed... & like you I get frustrated when I can't do creative endeavours... 😱 I shall look forward to the conference videos that eventually get put up on you tube. Big hugs from NZ. Love Nicole xoxo
You’re a very beautiful young woman physically and mentally hugs xxx
The back of my head made it into two of your clips of the conference! 😄
It was such a pleasure to meet you! You're awesome. 💖
Yay! So excited I can go next year, Nashville is only 2 hours away from my parents house (i live in Florida). The toe splint made me laugh so much I hear that question all the time too. Thanks for sharing it all and your words on how EDS affects you resonate very strongly with me too. I feel the same way and truly believe God gives us these journeys because we are the strongest and get to see life through a different view maybe but still blessed at the end of the day just in our own ways. It may not be understandable to some people but we choose to see the positive than constantly live in a dark and negative place.
Thank you so much for this. I am currently on a health journey that has been up and down. Doctor appointments are frustrating because they don't know whats going on with me. I strongly believe I have EDS Hypermobilty type but its prooving very hard to get help with this where I live. I've been on a slow and steady downhill slope. But your video, and many other CZcamsrs with disabilities videos, keep my hopes up 😀
Jane Justice Doe ....the EDS community is large and full of love and support and suggestions if you need them. Ont be afraid to reach out. I've learned a ton from Christina's videos. Sending good thoughts and gentle hugs.
I hope you get a diagnosis soon 💖 best of luck
Socks with sandals?! Christina, NO! 😱😂
Oh, how I wish I could go to a conference like that. Sweden is so far off. Here there are lectures sometimes, but not a big thing like that. Wow!
I have those papules on wrists and feet too, I have to check my kids. I am pretty sure my 6 to has EDS, he can fall over standing still and his fingers are veeery over-bendy. To use papules as a way to diagnose, wow, that would be cool. You can see them, easy.
Yes, greatful is a good one. I am more greatful too, now that my EDS has blossomed fully and affect my whole life. So very grateful.
Thank you for another weeks vlog ❤
You are always so gracious ❤️❤️❤️
Thank you so much for vloging the conference as I live in England and I have no way of getting to America, so it was really interesting to me.
The waiting list for Rodney Graeme in England is 4+ years and his clinic is just outside London, which is the other end of the country from me (...and I don’t have a lovely mum to drive me...), but I was told that he was retiring so there was no point in being on a waiting list to see him and no-one was taking on his clinic after he left.
I also get so exhausted that I have to rest or I can’t function, so I understand too your frustration with that. I’m sooo not a morning person, unless I haven’t gone to sleep yet! (My sleeping is rubbish and I just found out -from the nurses in the hospital - that I say “ouch” and “arrgghh” in my sleep when I move!).
I have noticed those papules on my wrists and feet before, but I had no idea what they were, what they were called, or that they were part of my EDS!
Honestly your vlogs inspire me so much and make me so happy, because of your grateful and positive outlook in life! I'm so happy I stumbled upon your channel, I've been watching it religiously for a month now! You are the sweetest person, thanks for doing this!
You're so pretty!
I know I haven't seen the whole vlog but I just have to say how jealous I am that you saw Aladdin!!! And I am 1st to watch!!! Now to continue witching!!!
You looked so happy......so pleased you to see you going out and enjoying yourself xx 😘
HUGS to you! You handle so much with such grace!
My body reacts that way, too if I do ‘too much’ ( sometimes anything). I get low fever, shakes, extreme fatigue and body aches. I think it’s a side effect of my spinal cord injury. It’s like our bodies just say “DONE!”
lulu nordahl ditto here
I’m so glad you had such a wonderful time at the conference I hope you get to rest and recover xx
Sorry we didn't get to hang out this year, but hopefully I'll see you at the conference next year! (I'm also @lizthebiochemist on IG, fyi). ^_^
What an amazing week! xxxxxx
Ahhhhh it was so lovely meeting you
Congratulations Christina , your so awesome !
Fry life water bottle!
This is great!!!!! What an amazing conference! I'm in too much pain now to use a therapy vest, but am shocked at how small they are now! I actually had one of the original prototype machines in the early 90's. It was about the size of a suitcase and felt like it weighed 100lbs(although I think it was closer to 35)! Get some rest and I'll see you next week!
you are awesome and that's great they have conferences like that so people can learn more about this disorder I think it's great
So happy to see the notification for this video pop up. Glad you made it to the conference. It’s great to see you guys supporting each other.
So happy you had a great time despite the back problems! I have already endorsed you in all the categories
I endorse Christina
I tore a muscle in my back and have no idea how and it creates a huge bump on my back a 2nd again on my calf before that on my Calf. So painful. I am glad you went to the show!
I saw a Frey Life water bottle. I was like "wait what!!??" 2 sec later. "Oh duh, that's Christina's purse."
WOW Cristina Bloom is amazing.
Are you still using CBD oil? I just ordered today, my functional doctor recommended for me and try if it helps with my chronic pain. Thank you 🙏🏼 for the video
Lali Tea she used Thermu
I recommend bong rips
She has a 50% off code on theramu cbd products that use emu as base. They work amazingly. My husband nabbed half of mine for muscle pain with his carpal tunnel. He too agrees relief within mins
I'm really praying that I'll be in a better position for next year's conference to attend! I've really wanted to go! But, we all know how chronic illness is and how slow social security can be too get around to getting those letters out. Ugh🤦♀️ So happy YOUR health played nice for you💜
I've seen that vest on other channels for CF but I didn't realize that it would be useful in treating EDS.
She has it for her pulmonary condition, not really EDS.
Oh okay. I want to try a vest one day to see if it helps my asthma (the mucus that gets stuck after attacks).
Haha oops it looks like somehow my mother answered you with my other CZcams account 😂 I don’t even know how she managed that!
Yes, Bonnie has a unique presentation with her lungs. She has a serious lung condition/diagnosis which is assumed to be related but there isn’t much data. She just started with the vest but is already noticing a lot of positive changes 💗
Crazy to see myself with my son in your vlog. 😜
Well said "greatful" that is the same how I feel about it. ❤️
Now get your rest xxx
Id walk through the door at the conference ball and head straight to the dessert trolley!!!
Your so Awesome! You are preparing me for my LP Shunt! I have IIH possible POTS and EDS. Where do I start with testing? I also have Hashmotos Thyroiditis and I did not know how important Cortisol and a Edrocrine Crisis could happen. I'm going to for sure keep up with that after my Shunt operations!! Thank you for all you.Lisa from MI💜
I have those fat things on my wrists too.
Okay I don't want this to sound rude, but the companies that are there, since stuff is so expensive are they pushy like some companies can be or are they more like let's give you the info and measure you (if it's something they measure for) and you can order later? My issue is that I want to go next year but I have to save so much just to be able to go.. I hope you understand what I'm trying to say through my brain fog.
I did not find them pushy. They are very nice and understanding of people’s medical and financial conditions.
Awesome, I didn't think they would be.. and thank you for understanding my rambling
Haha oops it looks like somehow my mother answered you with my other CZcams account 😂 I don’t even know how she managed that!
😂😂 I didn't even notice until now that it wasn't your normal account! Oh well, she answered my question. 🤣
I have a lot of symptoms that make me think I have EDS, but I can't get diagnosed because EDS isn't known where I'm from
Sazkie -chan where r u from
Hey Christina
Some say why me in life. Why not say, Why not me. :-)
Are you off dairy? That can cause those dark circles.
There is no dairy in my formula. But I have heard that before. I know that when I did eat I noticed a big difference in my inflammation and sinus symptoms when I stayed away from dairy. But the circles are there nevertheless lol
@@christinadoherty3212 I suppose dark circles is not the worst symptom to have. 😉
I think of you often Christina. Prayers to you.
i can’t help but wonder if you don’t have low pressure symptoms because the fluid is building up in your back instead of in your abdomen... or some of it is instead of all of it... i have idiopathic intracranial pressure so i totally get the pressure issues... and low pressure is AWFUL... i’m not sure which is worse... too much pressure or not enough. they are both pretty awful.
Q t ha pasado en la cara? La tienes super hinchada y casi no tienes barbilla.... se t ve muy extraña y rara