Vlogging with EDS: Iffy Echocardiograms and Christmas Celebrations | Week 7
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- Опубликовано: 16 сен 2024
- Im sorry the vlog this week doesn't have too much content or fancy camera work. You know how it is around the holidays. I hope that everyone had a very merry Christmas or a wonderful Hanukkah if that is what you celebrate. And if you don'y celebrate anything, I hope you at least had a very merry day off! Thank you all for sharing your time with me each week and following along beside me in my journey. I hope that I can do the same for you. I would love to hear from you and get to know you in the comments!
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Merry Christmas, Happy Birthday and a Happy New Year
Hi Christina! I discovered your videos a while ago when I got my 'possible' eds diagnosis and absolutely loved them. I got an official confirmation a few weeks ago, and the first thing my parents did was start googling. They told me they stumbled upon your channel and watched every single video you posted! They were impressed with how informed you are and said you really helped them understand what living with this condition is like. Thanks for being an amazing advocate in this community!
+Alex B Wow! Well I am so glad I was able to help in some way. I know that I wish there were more resources available when I was diagnosed, so it makes me feel good that I can provide that for others. Im sorry you are dealing with all of this, but im glad you were able to get some answers and a diagnosis. I know how powerful a diagnosis can be when you are searching ❤
Meep, I know this is years old! But I’ve been watching through your weekly vlogs and we have the same birthday!! It’s such an uncommon date, but incredible to randomly find someone else with it 🥰
You should never feel bad for not recording a video if you don't feel like making one or can't. I think that it's important to make videos for RUclips for yourself, and somewhat for others, but to have it be a positive part of your life. If it's not fun for you, then you will probably get burned out, and that sucks, so please don't do that.
Regarding the echocardiogram, I also had one done, as well as an EKG back in October. The results seemed mostly okay but I didn't really understand the medical lingo that was in there. Like you, I show no signs of mitral valve prolapse, which from your video I now understand to be a bigger deal than I thought, so I'm glad to hear that. I did, however, have the same notes about regurgitation in the report. It sounded benign to me, but I will include those excerpts here for reference: "There is trivial (physiologic) tricuspid valve regurgitation," "There is no mitral valve regurgitation," and "There is mild pulmonary valve regurgitation." I have always had a higher heart rate, even in high school when I was relatively in shape with sports. It usually hovers around 100bpm, and it was even higher five years ago when I was in the hospital after surgery for thoracic outlet syndrome. I agree with you that there is nothing we can really do, so we shouldn't worry about it for now. Worrying for me actually sometimes causes chest pain, so what's the point. It's actually a bit ironic to think that worrying about my heart can cause heart problems lol.
I'm glad to see your Christmas went well, and that you felt better this year. I am usually a bit of a grump, but I realize that you have a great attitude about it all and it's very inspiring to me. Thank you for your updates :)
Thanks so much Josh, your comment meant a lot. :) What you described is almost exactly what my report looked like as well. I know what you mean about the worrying lol, very ironic. Im glad to hear though that you are still just living your life with it, im sure it really isn't much of anything to worry about. Ill let you know should I ever discover otherwise XD
My daughter Joy has an enlarged ascending aorta that actually got bigger even while on blood pressure meds so thank goodness we did get her checked every six months. She seems to be stable now. It's still enlarged but is not any larger than last year. Good for you for staying on top of things! That gets me thinking; when did I last have mine done??
So glad you guys were able to catch that and are keeping an eye on it!
I had Lyme disease and it was MISERABLE so props to Mickayla definitely. My memory is still kinda meh from it (short term memory). It was early onset but it was horrible.
+Lauren Allison So glad it seems like you are on the other side of that for the most part! Lyme disease is a nasty disease 💚
Happy holidays and Happy New Year! Catching up on your videos tonight! Happy Birthday as well! Hope to see you in Lush soon!
Thank you! I hope you had a very merry Christmas as well! I think my mom will kill me if I buy anymore Lush stuff right now XD I got quite a few things for Christmas and then online for boxing day. I will smell great for the rest of my life lol
Happy Birthday Christina! I'm glad you had a merry Christmas this year. Best wishes for 2017!
Thanks so very much!
=), ur mask totally matched ur jacket on christmas eve. Tbh think my family's living room looks worse on christmas morning as all the wrapping paper my dog will rip into little pieces as it's the only time we let her.
I was actually dx'd with mitral valve prolapse years ago. The cardiologist told me that the majority of women who give birth end up with it.
Gotta love these Texas doctors! (That's right up there with the vascular surgeon who told me "skinny women don't get varicose veins"😲)
happy birthday!!
+Tamber Grable Thank you! :)
I'm so glad you had a healthy, happy holiday this year! You definitely deserve that reward after all of the fighting you've done.
Ideally the regurgitation isn't anything to be too concerned about -- but I'm sure they're just going to keep an eye on it. I had an echo/holter monitor study done in about March & other than some occasional tachycardia, everything came out clean! It's strange to think about how different EDS patients can present from another. I have a mutation on the gene for VEDS but I've had no heart or artery complications [THANKFULLY!]. Just a lot of the more superficial signs [easy bruising, translucent skin, spider veins], dental issues, & a bothersome hernia. Yet you're most likely Hypermobile & have more crossover than me. Funny, that. :P
Here's to a healthier new year in 2017! It may not be perfect & likely won't be, but at least more manageable. xx
Thank you so much, I hope you had a lovely holiday as well!
Christmas wasn't really that much of a big deal but yesterday was my six year anniversary with my boyfriend. So that was pretty awesome!
That is too, too true...
OMG Christina! Is your birthday the 26th?! If it is we have the same birthday! I hope you had a great Christmas and birthday and I'm so happy you weren't sick. Unfortunately my whole family had colds, and of course me having EDS meant I went and got a chest infection... but I made the best of it anyway :) looking forward to your next video. sending prayers and spoons 🎂🎁
No way! Birthday twins! I don't often meet people who share my birthday, so thats kind of special. Sorry you were sick though! Thats definitely a huge downside of our b-days, if you are sick on Christmas you are sick on your birthday.
Christina Doherty Our b-day is an annoying time of year for us EDSers... It's so great to find someone who is fighting the same battle and is also willing to share thier journey. I don't often meet people with the same birthday as me and I definitely don't meet many people with EDS, maybe we could keep in touch and get to know each other better? I'd really like to learn more about you and see if we have anything else in common! still sending prayers and spoons :)
My echo gram is coming in april. It's my first one. I am so nervous. It helps to hear you talk about it and now I will know how to prepare for being naked too. I am gonna wear pasties. hahhahha
+Tigress_Free2BeMe Lol I love the pasty idea! Let me know how that gos over 😂 It really shouldn't be bad though, the worst part is just waiting for the results
I will for sure let ya know. When I got my colonoscopy years ago I drew a smile on my butt hahhaha
I love your style and you are beautiful! My doc said a few days ago that she thinks she can get my neck under control by treating my mast cells.... so I dunno.... we will see what we can do....
as an EDS patient Im weirdly used to being naked or almost naked in doctors offices. Its always kind of awkward because the doctor usuallyy has assistents and stuff there to learn. but who rly cares haha
Isn't it remarkable how fast modesty gets thrown out the door? lol I have always been a modest person, I won't even wear a bikini to the beach. But then once you've spent a bit of time in the hospital you kinda forget what modesty is.
My echo tech was male too lol I did find it painful but I find pressure painful so probably why
Where I am you can only get echo if showing symptoms or have been diagnosed with vascular can't request them but that is because nhs have to save money lol
Im sorry to here that! here it is usually one of the first thing ordered when someone is diagnosed with EDS. its a shame to hear that isn't the case everywhere. I just wonder how my lives could be saved by early screening.
On take 3 for the candles, the count went "one, two, three-" *RUclips app shuts down*
My doctor got my results back the same day but then told me everything was fine.....