Vlogging with EDS: Slumber Party Adventure and New Medical Gear | Week 77

[@bee42Sad]

This is the happiest, hopeful, and most energetic we've seen you in many weeks! Glad you are doing well.

[@Tessanna12]

Hi Christina, just thought I'd pass along what I do in your situation when I have to lead my hubby through finding something thats hard to explain where it is. I get him to take a picture of the drawer, or closet or shelf or whatever. Then I can zoom in on the picture and look for myself, or point out to him what item I need. So simple, but it took me forever to think of it. Hope it helps. ☺ I know how frustrating it is not to be able to just jump up and get something yourself and things get misplaced so easily when you have to rely on others for "help".

[@ninamayer9254]

I think that's one of the few things I appreciate about not eating: The calm minutes when everyone is downstairs eating. I looove this time for myself. Yeah introvert life definitely

[@lukeism2]

Oh that’s just my eds shoulder... for me that’s a “I’m going to a hospital shoulder”

[@lorinewcomb4717]

I have EDS and Me/Cfs...this is how I feel. I understand completely. It evidently is common in Eds. I have found a few myself. Jackie is the only one I know that for sure is aware that hers is mitochondrial. ❤ sending my love

[@katsuyafeather1309]

I was just officially diagnosed in the last month by my mast cell specialist with EDS and I would really love to talk to you about what it’s been like for you. I am only 18 and I’ve been sick my whole life with crazy things. It just seems that my EDS and POTS with my mast cell disease seems to just keep getting worse as I get older. It would be great if we could please chat a bit.

[@renyputman7118]

Yay a mega long video, great way to end my evening!

[@nowayitsjennie]

I've heard Disney parks are really accessible and it's the perfect trip for wheelchair users, staff are very in tune with the needs of guests and there are loads of accomodations for all kinds of conditions

[@adventureswithspoons6038]

nowayitsjennie they're super great! I was in my wheelchair in magic kingdom and one of my casters fell off, the cast members were very helpful and nice.

[@lululovesyou7618]

If you look into smart drive just be aware that it can have difficulty handling the winters here where we live ( I live in MA too). We did a demo of it and there were issues. There are other power assist wheels where the motor is on each wheel itself and they are ( to us) more powerful and able to handle the hills, bumps, ice, snow etc. better. We went with those. Everyone has their own preferences based on need- area-activity. Just wanted to share our experience.

[@meganer12]

Completely agree with you about smokers; why the heck do they have to stand right by the doors to every single establishment?! My mom has asthma that’s super aggravated by cigarette smoke, so she obnoxiously coughs at the smokers. Can’t imagine dealing with the clanking of your rings against the metal rims, it seems like it’d be a horrible sound to hear every time you make a move. Omg, you used the word proprioception! That’s one of my favorite words that almost no one knows lol.

[@tylerbennett4908]

Brilliant use of med supplies! I’ve been collecting prescription bottles, EKGs and other leftover stuff to make art out of hopefully :)

[@emilieh1458]

Watching you get ready for bed, I’d love to see a video about your bedtime routine or maybe your makeup/hair routine. You have the prettiest skin and hair! 🌸

[@amberleystein6766]

I'm not sure what kind of hand rims you ordered exactly, but insurance covered my Natural Fit hand rims so there is hope! It helped a lot to have two of my doctors write letters explaining their medical benefit :) good luck Christina! Your videos have become my weekly infusion jam, so thank you for that!

[@rheabruen]

"my fitbit tells me that i've crocheted 4 miles today" well, you're getting your exercise in!! :D

[@happycherries31]

Oh Christina!! The look on your face when that extension fit!! What was even funnier was I'm over here in Wisconsin yelling "YAY!" at nearly 12am! :)

[@faeriesmak]

I understand what you mean when you were talking about feeling really tired and out of it after having physical therapy work done on your head. I get some pretty extensive chiropractic work done on my neck because I get torsion and it gets stuck. I get really fatigued after being adjusted. It’s very strange.

[@valeriemaciver1613]

I am grateful for the videos you create. Thank you for being you, Christina.

[@stephaniedunn5060]

I just LOVE your weekly video's!! Thanks for sharing even on the days it's not so easy! I think that helps more people understand chronic illness a little more when they can visually see the exhaustion that creeps up! Keep up the great work! Your very inspiring and I look forward to seeing you every week! Love you Christina!😊❤

[@stacyklostermann8378]

Hey!! I have smart drive on my manual rigid wc and it has truly been huge help!! I know you'd Def love it if you tried it!! Such a huge help on joint pains, energy, and independence!! Hugs, love, and prayers always!

[@anikabaddeleyrollingbackwa7341]

The fit bit registers pushing a wheelchair as steps too!

[@sunglassesgirl]

It makes sense. The Fitbit FAQ says a few things about this: *How does my Fitbit device count steps?* Fitbit devices use a 3-axis accelerometer to understand your motions. An accelerometer is a device that turns movement (acceleration) into digital measurements (data) when attached to the body. By analyzing acceleration data, our devices provide detailed information about frequency, duration, intensity, and patterns of movement to determine your steps taken, distance traveled, calories burned, and sleep quality. The 3-axis implementation allows the accelerometer to measure your motion in any way that you move, making its activity measurements more precise than older, single-axis pedometers. Fitbit devices have a finely tuned algorithm for step counting. The algorithm is designed to look for motion patterns that are most indicative of people walking. The algorithm determines whether a motion's size is large enough by setting a threshold. If the motion and its subsequent acceleration measurement meet the threshold, the motion will be counted as a step. If the threshold is not met, the motion won’t be counted as a step. Other factors can create enough acceleration to meet our threshold and cause some over counting of steps, such as riding on a bumpy road. Our engineers have worked diligently on your tracker's algorithms to make sure that it does not pick up false steps or activity recordings while in a car. Unless you are driving in a car with a stiff transmission or on back country roads, your tracker should not give you credit for any work that you don't do. If you do pick up some steps while driving, see How do I delete data? for instructions on removing steps. Your device may register movements or restlessness as steps when you're wearing it while you sleep. The number of steps typically measured during these periods is minimal, and should not offset your overall fitness progress. Any steps taken to and from other rooms during the night will also be tracked. Equally, it's possible for the algorithm to undercount (not meet the required acceleration threshold). Examples here include walking on a very soft surface such as a plush carpet. *Will my device count steps if my arms aren't moving?* If you're doing something like pushing a stroller or shopping cart, your wrist-based device will count your steps but the total may be slightly lower than usual. *Why do I get extra steps sometimes?* Fitbit devices have a finely tuned algorithm for step counting. The algorithm is designed to look for intensity and motion patterns that are most indicative of people walking and running. When working at a desk, cooking, or doing other arm movements, a device on your wrist can pick up some extra steps if it thinks you're walking. Many of these situations-such as working or cooking-do include a few steps in-between stationary periods so the device tries to give you credit for those steps. For the vast majority of customers, the amount of stray steps accumulated is negligible when compared to the entire day. For a more technical explanation, see How does my Fitbit device count steps? *Why do I get steps when I'm riding a bike?* On bumpy trails it's possible that your device will register steps but these should be negligible in your overall stats. If you have a device with multisport mode, make sure you choose the Bike exercise before starting your workout. If you're relying on SmartTrack to automatically detect your bike ride, make sure the Outdoor Bike exercise is on. (In the app, tap the exercise title and then tap the gear icon in the top right.) If your device doesn't offer multisport mode or SmartTrack, we recommend logging your bike ride manually to get the best calorie burn estimation. For more information see How do I track my exercise and activities with Fitbit? *Will my device pick up steps when I’m in the car or riding a vehicle somewhere?* Your device has been tested against driving, buses, trains, and other public transportation and should not give you extra steps when you’re traveling under normal conditions. On bumpy roads or in a car with a stiff transmission you may get extra steps. Though a few extra steps won't affect your trends, it's possible to log a driving activity and remove the steps from your account totals. Nothing pertaining specifically to wheelchairs, of course. Way to be inclusive, Fitbit. =( (I have a Fitbit Zip... I originally got it because people were literally chasing me, in circles, around the two story manufacturing plant at my first job to track me down AND I was curious if there was a correlation between my productivity level and the number of steps taken... it feels like those 'healthy days' were forever ago... =/ Now I use it to keep tabs on how much, or how little, I'm doing each day... kind of hard to ignore the numbers...)

[@christinadoherty3212]

+Anika Baddeley Opoh they should definitely have a special wheelchair mode! That would be kinda fun! They can even make a clip to go on the spokes the measure the rotations

[@elzekloen]

That makes me think, you should totally be able to put one of those mile counters for bikes on a wheelchair. Those work by measuring rotations of the wheel. I think I've also heard someone say the smartdrive bracelet counts your pushes, but I'm not a chair user myself so I'm not sure about that.

[@sunglassesgirl]

Elske Kloen -- I THINK you're correct that the small bicycle computers could be mounted on a wheelchair. Rear wheelchair wheels ARE mounted differently bicycle wheels AND the little bike computers have a wire that connects the sensor to the little display. I'm guessing the wire could be buried in or under the chair's upholstery during the install, never to be seen again. Full Fitbit FAQ: help.fitbit.com/?l=en_US&c=Topics%3AFAQs Christina Doherty -- Fitbit has a Developer platform for their two newest Fitbits dev.fitbit.com/ I'm sure someone will make a 'special wheelchair mode' sooner or later. =)

[@zyciewusatvbygosia8880]

I moved over year ago to area of Boston and I like the Boston city but also not have been yet in many places and yes thats true that many good hospitals here, and my bf had 2 operations in Brigham Hospital although he had some unexpected side effects or how its called after one, but now he is ok. He also was in there for pneumonia and heart ablation in 2015.

[@katiebee8699]

You mentioned that you’re always getting information from subscribers and online friends about equipment etc. I’m not sure if you know “Chronically Jaquie” or if you’re a part of her community but her channel is really a wealth of knowledge from her personal experiences. She’s got different playlists like a playlist of videos that she discusses her chronic illnesses. You might be interested in her playlist of videos that she discusses her equipment and the evolution of all different equipment she’s learned with along her health journey. She vlogs a lot like you do. Everyone is so vastly different of course, but she shares a lot of the same health issues and life issues that you and many of us here deal with. When I heard you talk about learning about new equipment options from your online community, I thought about Jaquie. If any of us can learn anything from one another, I know I sure do count that a HUGE BLESSING! I know I’m not alone in that sentiment! So I just wanted to share that info with you, that’s all. Onward and upward, friends! 🎀💕🌸🐓🌈💙💎

[@Zombiegrrl99]

I've gone on holiday to Boston -- I love it! The mall near the finish line is remarkable & the T is so much cleaner than the tube in most cities. This is a happy video, which is awesome to see. :)

[@NorseButterfly]

Take to KZbin to learn your camera😉 Just search your model and you'll find all kinds of vids. I'm happy to see you're starting to feel more like yourself... with cabin fever setting in of course! I think many people look at us and don't realize that we get cabin fever even though we've been to doctors offices 3-4 times in a week. It's just not the same as being able to run to the store , go to the mall... ahh! The mall🤔 All that walking, window shopping, trying on clothes, shoes, EATING in the food court. Heck! How many of us just want to eat again?! Or use the bathroom for that matter?? BTW, where did you get your fitbit?

[@BeverleyButterfly]

Wow what a week! Thank you for showing a little of Boston I’ve loved new kids on the block since I was 11 and always dreamed of visiting one day!

[@yogabirds]

Great vlog! I've found most doctors actually don't know about the different options for medical products. Most write a script and leave the rest up to home health, pt, ot, etc. I hope the new connectors work well. Very few things adhere well to silicone, so you can actually use super glue to seal the mediport. If you need it, you just give a good tug and it will open. I used to have that happen all the time. I know this sounds gross but if something sounds good that would make me sick to eat, I often chew it up and spit it in a cup. I'm glad to see you are doing well!

[@xemmafacee]

I know you do a lot of painting and journaling, do you find that that specific CMC splint allows you to hold a small object like a pen or brush comfortably? I haven’t had any luck finding one that lets me keep trying to write by hand, I much prefer it to typing everything!

[@amberlrodriguez]

You would love Disneyland sooo much! And they’re pretty wheelchair accessible! :)

[@nessbailey7931]

I live 6 hours from Boston in Maine and I’ve been once. It’s great, it was for a field trip in 5th grade, all about the revolutionary war.

[@katiebee8699]

I do a lot of research and also I enjoy watching a number of vlogs like this. I have learned that chewing, swallowing, and eating are all important to do if you’re medically stable to do so because those are basically “use them or lose them” functions. I was wondering if you’ve ever heard this or is that a myth? Thank you for sharing your opinion and experience. Blessings and peace.

[@latikabanerji5241]

Have a terrific new week! 💚

[@WackyLisa]

Oddly, my charge two does not seem to be recognizing knitting as steps at least not consistently

[@allie4680]

Ooh I wonder if Christina is going to start selling merch as one of her “secret projects” 🤔

[@life-gs7zr]

Lmao

[@pkendlers]

Love your Boston driving music, lol!

[@love2cats]

Thanks to you now I love Mondays!

[@miracle84]

Podcasts are great for in the car!

[@darkbluematter1753]

I don’t know how your videos go by so fast every time. It’s always so nice to see you :)

[@julieannemichelle]

I love you spirit and attitude.❤️

[@b94454]

nice to see you happy.

[@lululovesyou7618]

You made me laugh because I had the same issue and at PT today she kept saying"You're leaning way over to the left...." when I thought I was standing straight.

[@nadjaextraordinary]

I just saw this has been up for a minute and... YAY! I'm happy😂

[@life-gs7zr]

Do the rings mean something like family wise or any sentimental value and 26:06 what is that on the tv

[@533134]

The reason many options are given because of cost and insurance often doesn’t cover it.

[@TheShellie28]

When you shake your arm about 12 times it sometimes adds a thousand steps on the Fitbit lol

[@mackenziepowell4199]

You could used video chat so you can see your room like your in there and u can help find your stuff

[@poppycopper1]

I did not know I can get things for my hand grips on my wheel chair, I’m in the Uk so I will see what I can find. Looking forward to getting some. Hugs xxx

[@ellenberry-mcintosh190]

Poppy Chocky hey I'm from the uk, and I use silicone hand rim covers that make the rim thicker and easier to hold on to. Also makes it a lot easier to push when it's wet. I get them from my wheelchair/mobility shop x

[@poppycopper1]

Thank you xx

[@Hi_Felisha]

Definitely yelled “the mitochondria is the powerhouse of the cell!” Lol biology nerd alert 🚨🤓

[@lilybecker1523]

Hi from Guernsey! Quick question - you mention motion sickness in the car - is that related to your neck issues or what else? I am suddenly struggling with motion sickness and I don’t know why

[@leopriest133]

The sleeping thing is so true! I now sleep cuddled up with a Mickey Mouse big plushy pillow so my shoulders stop dislocating in my sleep, it works better then nothing else 😀😀

[@shawnresor498]

Did your camera come with instructions? Can you Google functions on the camera?

[@TheShellie28]

I’m guessing the theramu doesn’t ship to uk Shame as my mum could do with the balms and I could use it for my bulging discs and sciatica I clicked straight away when you popped up Boston looks amazing lots of love

[@lukeism2]

I’m Shellie it ships to Australia

[@georgeeden5835]

Odd question (it may be me being dumb) at around 30:23 you show the feeding tube and there is also a black tube, if you don’t mind me asking what is this for?

[@christinadoherty3212]

+George Eden Oh that was likely one of the clamps on the port-a-cath extension. I have a port for IV saline and I always have an extension on so I can hook and unhook myself.

[@cotyart270]

OH MY GOSH. I have Ehlers-Danlos syndrome with Mitochondrial Disease in my family!! I've just never seen anyone with the combination like me before.

[@533134]

Have they have checked your adrenals? Would the mitochondrial disease cause shortness of breath?

[@christinadoherty3212]

+Jessica B I do have adrenal insufficiency. So I fo take cortef twice daily. But im working on getting into a doctor that is more knowledgeable. I think its affecting me more than I know. And as far as Mito, yes I think it can affect the breathing. Its. HUGE umbrella term for a lot of different conditions rooted in the mitochondrial dysfunction

[@loiscassels8966]

Love you!

[@kreepyskera]

Odd question but where is your black lacy looking bra from? I've been looking for one and yours looks super comfy. Much love❤

[@christinadoherty3212]

+sera whitt Its from Francescas. I have a few and I loved them so much I aNted to order more. But they are out. Aerie usually has a good selection though and you an sometimes hey lucky on the “fast fashion” asian based sights like shein, Cupshe, etc.

[@kenmiller1145]

Have you watched the grey life they live in boston

[@Themccormickfamily]

Kendall Miller the Frey life? She does. She sang Mary's " ain't got no needle in my chest" song in one of her clogs.

[@scorpleeon]

You sorta looked like Gal Gadot at one point later in the vid. Wonder Woman. 👏🏾

[@kaylabarnes]

So sorry you are so exhausted.

[@alyssawssinging4039]

Hey Christina ❤️

[@suem6978]

Does Lauren have EDS?

[@mackenziepowell4199]

I'm gonna to start xolar

[@emmalemon26]

❤

[@jobo8281]

Does EdS affect women more than men? Just wondering

[@deeps5837]

Women

[@mackenziepowell4199]

When you realize that your favorite KZbin has 10k

[@bridgetobrate5685]

Why are you not able to eat food by mouth?

[@anonymousbub3410]

Does your mom live with you?

[@kenmiller1145]

Frey

[@pkendlers]

Kendall Miller it could be the"grey" life... New England is all grey: the sky, the beach, the cars... Lol!

[@kaylabarnes]

Cheapest made, most expensive. #money