Vlogging with EDS: Surgery Talk and EDS News | Week 20
Vložit
- čas přidán 24. 03. 2017
- Hope you Guys are all doing well! How do you like my new little intro?
Thanks for coming along on another week with me as I gear up for another trip down south.
Ehlers Danlos Society Classifications Video: • 2017 EDS Classificatio...
Where to find me:
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
My Etsy Shop: www.etsy.com/shop/ChristinaPa...
My Redbubble: www.redbubble.com/people/chris...
My Medical Facebook: LoveOnChrist...
My Personal Facebook: / christina.doherty.315
My Email: Watercolormeimpressed@gmail.com
Lullabye (Sting) by Twin Musicom is licensed under a Creative Commons Attribution license (creativecommons.org/licenses/...)
Artist: www.twinmusicom.org/
You don't have to feel pressured to shorten the videos; i love the long ones :)
+Ruth Clark ❤️ Good to hear! Lol because I tend to ramble
Your positive attitude is so inspiring. It's a reminder to myself to keep positive too when I'm struggling with my own chronic illness...so thank you for that!
I agree
+Rose Johnson Awww Im glad to hear that! thank you lovelies! 😘
the intro is adorable!
+Jordan Chilton Thank you!
Love the intro.
Your vlogs are better to be a bit longer, the info and explaining raises awareness and your voice is soothing for most people.
I hope everyting is going to be better for you! Keeping you in our minds :)
+Andreea Roman Thanks! And thats a good thing too because I usually edit out so much hahaha
I love the intro!!!
+Anna Riordan Thanks Anna!
I love your positive attitude! good luck with surgery, you'll be in my prayers 💕
+Tara Feeley Thank you! 😘
I'm sending you well wishes. I can't even imagine what you have to go through. I am in awe of how positive your attitude is. It's truly inspiring. Hope all goes well :)
+Kristine Marie Thank you! ❤️
loved your intro, it was so cute and showed your fun personality
I love your new intro! I loved catching up with you by watching your vlog tonight. I'll be thinking of you this week and hoping your nausea gets better. You are awesome! I hope when you're reading this that you have a really lovely day!
+Erin Murphy Thanks Erin! Its always so lovely to hear from you ❤️
I love the new intro! And I hope everything goes great with travelling and stuff.
+Anne-Lies De Reu Thank you!
the new intro is super cute!! sending u lots of good vibes and spoons for this coming week💕💪🏼
+agirlisariot Thank you! 💜
I loved the intro. It was adorable but also realistic. Keep up updated, zebra! Love ya! *gentle hugs*
+Emilie Hall ❤❤❤❤
Love the new intro. I had to go back and watch it again :") I like your style too, it's very feminine and at the same time functional and comfortable. I'm so tall I have to wear what ever I can find that fits and that is kind of annoying sometimes.
Long videos are welcome ❤
much love ❤
Love the new intro! Don't shorten the videos!
+Laura Rodriguez ❤️
it's so amazing how upbeat and positive you can be even when you're going through some though stuff. i really admire that. I hadn't known about the thing in Vegas and I'm totally gonna try and go now, Vegas is only a couple hours from me so it would be a great opportunity forms meet up and to meet more people with EDS
+Dana Max Thats so cool! Well if I end up going we will have to meet!
I love your new Intro!! I hope you can make it to the conference. It is a little too early to know how you will be feeling, but you are such an awesome spokesperson for this condition, so knowledgeable and positive, I really think you would be great to talk to for other patients there. Feel better soon, and have a great week!!
+Beth Wade Thanks Beth! I really hope I can make it too! 💜
Praying for you ❤️
+Alice Anne Thank you!
omg i love when u upload! you motivate me so much
+Nicole Rodriguez Thats so lovely to hear Nicole! 💕 Hang in there!
Love the new intro!
+maura Grier 💕💕💕💕
I can relate to the surgery prep feelings you're going through. I've got a number of issues going on that need to be addressed, and it's never easy preparing for those doctor visits. I like the intro! I think it definitely needs to be added to future vlogs. One idea I had for future vlogs was discussing the types of doctors a patient with EDS might need to see. Just a thought. Been thinking about you.
+Daniel West 💜 I know you understand Daniel! hang in there as well
I'm totaling loving your bracelets! especially the pink one! Hope you get some much needed rest!
+jessica king Thank you very much 😉❤️
I love the intro! It's just so cute!
+TheSightOfTheStars Thanks! 😘
Love the intro, definitely keep it!
+Rachel Martin Thank you Rachel!
Omg I love the new intro
+Jessica Gibson 💕
I enjoy the intro!! YAY!
+Tigress_Free2BeMe ❤
I hope I can got to the Conference myself my family and I use to live there, we need to go back out there to get left behind things. So trying to talk dad into going then. Also that way I can bring my service dog Grimm. (He has never been on a plain so don't want to risk him getting scared and getting up kicked off) We would be driving if we are picking up things. So if I do hope to see you and all my other EDS friends there!
+Lunar Wolf Hope to meet for sure! I totally love your dogs name! 🐺
Love your intro!!
+Irene Case Awww thank you!
I like the intro! :D Most of my favorite clothes are second hand. I've learned how to put darts into skirts to make them fit. I hope one day you will be able to eat again even a little bit.
+Trekkifulshay Ooh im jealous! I haven't quite been brave enough yet to try darting
I began on skirts for a few dollars from the thrift store so if I messed up I wasn't too upset about it.
love the intro!
+Sarah Poison Thanks!
I just ordered that brace you have. I hope it works.
+Scott LEGO Fowler Fingers crossed for you Scott! 🤞
The intro is perfect! 😊
+Zac Gibbs Thanks!
Christina Doherty no, thank YOU! Really look forward to all your videos 😊 hope this week is better for you!
So my favorite show is Grey's Anatomy, and in this season they talked about EDS. It was one case in an episode and I thought they did a pretty good job, not perfect but pretty good. i think it was episode 4 from season 13! Just thought that was cool, knowing (from you) that EDS Awareness month is coming up.
Nic intro! The classification process For the EDS is just narrowed down a little more so Drs are able to use one specific tract to work with across all nations! Those who have already been diagnoses there diagnosis has not changed. They are just impliminting slightly new and tighter protocols in order to hopefully find what the genetic link is to the Hypermobil EDS !
+Nettie Clouse 💕
i love the intro and u are lycky u have a great support system and that your family loves you my family is pretty poor but I don't have a father and my mom has diabetes and kidney failure and I have eds types 1,2,3 pots syndrome so I get it and they're looking at surgery for my hands and neck
Been a bit into the new types recently as I did a school presentation theday the new criteria came out . I don't have eds myself, but another rare disease that's not genetic. As the topic for my presentation was genetic diseases, I decided to raise some awareness about EDS (:
+Nina Mayer Hey yay for awareness! And Im glad you got to present with the very newest info out there. Best of luck to you! 💕
Christina Doherty Thank you!!! And thenks for answering your follower's comments,I think this is kinda rare. Btw loove your videos
I really liked your intro.
+Dayna Vigil-Griego Thank you very much!
I'll have to check out the new classifications, because I have EDS type 3 (hyper mobility), which has been diagnosed by a geneticist, but we didn't do a genetic test, because, like you said, it doesn't show up on that kind of test, so he just did the briton score (sp?), and took a very long history and family history. I did also have a Echo done, to make sure my heart wasn't involved, and it was fine. I do think I will need disability at one point in the next 5-10 years, so the diagnosis is important. I'll be thinking of you this week! Hugs and love- Chelsie
+Chelsie Wise ❤️
You know I would love a morning and night routine video. I am having a hard time fitting in the normal "getting ready" stuff when Im having bad days and I end uo looking frumpy. How do you overcome this? I end up so tired just trying to wake up lol
+AnnetteLamour lol I hear ya! I do have a "Day in my Life" video that kinda shows them. But I definitely do want to get more in depth someday
Have you ever thought of making ASMR videos? You have the lovesliest voice and I find it so calming ❤ kisses from México christina I hope you are having lots of good days ☺️
+elbria I never had but people keep asking lol. Maybe Ill try it out someday
I'm actually really thankful for the new hEDS criteria. Since it's so rigid and detailed, I now have the ability to walk into doctors offices and tell them "I meet all these criteria, now give me a diagnosis." I have less fear that a doctor will dismiss me or give me an incorrect diagnosis. I feel like I can better advocate for myself in medical spaces. At the same time, I do not want to invalidate the fears of others regarding the new criteria. Hopefully, as more research comes out, there will be a more definitive answer (or even a genetic test!)
+Grey Likes Cats I really like it as well. I think it covers a lot of things that were lacking. I think a lot of people feel that way. But then there is the fear of having such a new diagnosis. Hopefully as awareness spreads it becomes more known and more and more people can be properly diagnosed
so love the intro, I have never been to a conference could you please explain more about the Eds conference I know you did a video because I watched it about the one where you got your silver ring splints but I'm trying to find out a little bit more about the conference because I'm going to attempt to go but I don't have any of the email addresses or anything like that from the people who do the conference's to know anything about it so my only connection is you right now because of the fact that I was so newly diagnosed last September.
+Dawn Keith Avon Hey! So its called the Ehlers Danlos Society Annual Learning Conference. You can learn more about it on the "Ehlers Danlos Society" s website. Its easy to find. Its a weekend conference held in a different hotel each year where a lot of the top doctors and specialists come to speak. Patients and doctors are all welcome to register and to attend all the lectures. You learn a lot and also have a lot of chances to mingle and meet other EDS patients. Its lots of fun 💜
I plan on trying to go
+judgebythefruit Awesome!
Christina Doherty I also was wondering who you have for a surgeon as I am having a hard time of finding one as most doctors freak out when I say I want a fusion even though my symptoms are horrible I have lost my gag reflex and now asperate food and drink regularly
There is still quite a bit of flexibility (oh boy lol) in the hEDS diagnostic criteria. Yes you have to meet each category, but there is wiggle room within each one unless you have a comorbid autoimmune CTD.
Also, PAIN is a major mast cell trigger
+ReineDeLaSeine14 Haha nice little pun there!
cute intro
+Jennifer Turney 💜💜💜
feel free to keep your videos long as long as it's not too draining for you to edit. CZcams's current algorithms actually are much kinder to long videos than short ones.
:)
Like the intro!
+Anne Davis Oh good hahaha because I often have to edit out like half a video 😂
Your new intro is great! I wish I had some extra spoons to give you to help! Hang in there kiddo!
+Lorena Thank you! 😘
Nice intro!
+jenna gutknecht 😘
As much as I know some people are scared of the new EDS diagnostic criteria, I am to an extent a fan of it. I feel like many people who have POTS or Dysautonomia almost go and assume they have EDS because there is a correlation, but the majority cases of POTs are actually only POTS/ Dysautonomia. I was diagnosed with HEDs over 4 years ago and we discovered I had the CO3LA1 gene mutation but because at the time we had no idea that Vascular EDS was on my dads side on top of the HEDs diagnosises on my moms side. So I am now rethinking my diagnosis of HEDS because of how severe I am on the EDS spectrum I have been told by multiple doctors that they have seen EDS before but never this bad over the past year (no one has ever told me that before September of last year, I knew I had a worse case but never thought myself as severely manifested until I got my NJ tube and my stomach went from some function to no function, I flunked my gastric emptying scan last monday really bad). I also thinkt there is a difference between Hypermobilty Syndrome and HEDs
+Madison I definitely like a lot of aspects of it too. I hope that if they can put together more rigid criteria it will be a lot easier to raise awareness to get a diagnosis.
I have always felt like the diagnostic criteria for EDS in general was too loose since I was diagnosed and the previous criterion had a lot of overlapping from sach sub type. I would like to see a spectrum for EDS so people could gauge how severe their case is (maybe a numbering system ie hEDS degree 10)
Blessing my dear I send you soft hugs. I have found a new problem within my problems. It's taken me 6 years to figure this out. But I have nutcracker syndrome. Here is the thing my grandmother has VEDS. She has lived a long life... in allot of pain in her elder years. She is not hyper mobile like myself. Yet I believe she has nutcracker syndrome. I have run into a snaphoo with my insurance and my EDS genetic testing. Insurance says nine... so I'm buying better insurance. I need a company that will stand with me not work against me. Anyhoo. I have been wondering how many other hyper mobile or vascular could have nuckcrackers syndrome and the extra problems it causes. What a journey this has been. Load of time in bed bad days with a smidgeon of good that makes my life feel much better. I hope all goes well with you. You're in my thoughts my dear.
+MzClementine Boy you are Just collecting them all aren't ya? You are in my thoughts and prayers. Its always hard to get a new diagnosis
Christina Doherty thanks love you are too!
have you ever tried CBD oil... to help with the nausea and the vertigo?? It's help my brother threw alot !! And it helps him not be so sick all the time !!! mabey talk to your doctor and see if you can try it !
+sara p I have not. So far I have had very severe allergic reactions to just being around cannabis products and haven't been brave enough to try the oils.
Christina Doherty i could imagine you being scared to try it ...im allergic to alot slot of medications and things as well !! I was just curious if it would help you not be so nauseous all the time .. and be able to not be so dizzy and nauseous 😥 well other than that I love your videos... you give me hope knowing I'm not the only one who suffers with pain or other physical problems and your videos just are so inspiring!!!! Hope all is well and blessings to you !!
sara p yeah I too have a lot of the same issues Christina has and I tried CBD myself and immediately my pots syndrome acted up and I passed out right away so people with EDS or pots have to be careful because oils like that seep in and we're so sensitive internally as it is that we absorb things a lot different than most and depending on the severity and the types it can be pretty bad
when you said the nausea game is real, I was like omg me too
+Mackenzie Powell 😂
Christina Doherty how do I get rid of it???
hey christina i hope you are feeling better. how many fusiins have u had? i have neck issues but in the ligamnets and tendons. its dangerous for us eds ppl to be doing surgery but its worth it . i have pots and eds classical and hypermobillity, going to see dr choprs but if u have any good neck surgeons who deal with eds and loose ligaments or nerve issues can u tell me please? im from chicago but traveling to rhodeisland for dr choora pain managment. i to dont believe in pain pills but j need help.
+nick papa I think ive had maybe 10 fusions? Im not even sure anymore. But it was very worth it. You are in the right hands with Dr Chopra! I could tell you some doctors names but they wouldn't be very close for you. Dr Chopra is really the one to ask. He will send you to the absolute best! He was the one who referred me to all of my doctors. And he's definitely very open to trying lots of different kinds of pain relief. He's definitely not very pill happy like some pain doctors 💕
I liked the long videos, especially since it's only once a week.
+marie setzenfand Great to know! Sometimes I cut them down a lot, maybe next time I have extra footage I will just leave it in 😊
i to have the hip issues eh
How are you so beautiful even when you just wake up???