Vlogging with EDS: New Brace, New Feeding Pump and PT Camp | Week 40

[@Huldren1]

What a lovely vlog Christina! I am an older EDS'er, only diagnosed 1 1/2 yrs ago after waiting 45+ yrs, and I am learning so much about PT, bracing, etc. etc. from you. I bought a YuYu bottle after seeing yours (using the nice discount :P ), and am very grateful for all your vlogs. Happy to see you having a good time helping out at the camp.

[@iannataro2363]

Hi Christina! I'm an 18 year old who was diagnosed with EDS type 3 a few months ago. Unfortunately, I have severe nausea, abdominal pain, joint pain, and breathing problems due to my EDS. As strange as it sounds, I love watching your vlogs especially to distract me when I'm not feeling well. You seem so strong and positive even with all you go through, and it's great to see that kind of positivity in the face of chronic illness (whether you show us those not so positive moments or not, because I'm sure we all have them). Thank you for that!

[@loiscassels8966]

So great to see you line dancing! You are awesome.

[@Pat_Kole]

It is good to see you so happy and upbeat! Glad that the new brace is working out well; you seem to move just fine with it!

[@scarecrowmax1192]

I'm so glad you had fun at camp! I hope camping with your family is just as fun!

[@BNHAalltheway]

Great vlog Your awesome glad things are going good for You what a sweet dad helping You with You feeding bag that's great You got a new knee brace glad You had fun at camp God Bless

[@emmalemon26]

I have an obsession with jars too! My house it full of them :p

[@almandinine]

Just a heads-up about that brace: you have to take it off and do some exercises for your thigh like every day, otherwise you WILL lose muscles. I wore one for a few months, and it does stabilise your thigh when you walk, and also squish is with those straps. My leg got very skinny very fast even though I did all the exercises prescribed to me and walked as much as I could. That said, though - best type of knee brace ever. ^^

[@MamaWithAFro]

I'm so glad you have such a supportive family. Have any of them done any videos? Your mom must be an expert driver by now!

[@auradragonfly]

I'm so jelly of your awesome new knee brace and your custom fit ones. I had to buy cheaper ones from Walmart bc I can't afford anything else. Mine are S/M but can still be too loose so I have to put the sock knee brace version underneath them or I usually just wear the sock type by themselves. I have an SI belt but still have many problems with my hips. I've been doing more then usually and walking more and I wore myself out so now my body is hurting especially my left hip and thigh. Sorry, enough about me....Glad u enjoyed yourself at your camp. And can be this active. (Sorry again for responding to an older video but I'm still catching up lol). Your parents are awesome. My mom lives a thousand miles away and hubby and I stay with his parents since our health had different plans for us instead of moving out ah well. They're all nice. Take care now!

[@christinadoherty3212]

I love this brace too! I spent a good 8 years in and out of drugstore braces myself and this is so much better. Can you try to at least get part of the cost of a brace covered by insurance? Its something to ask about. I know some people have insurance cover the whole cost

[@auradragonfly]

Christina Doherty we do not have insurance. We cannot afford it. I do the best I can with what I can get. My faith helps me also! :)

[@alyssawssinging4039]

That's so awsome that you got the knee brace in your size and he had it for you so happy for you😊😊😊😊❤️❤️❤️❤️❤️❤️

[@laniewisniewski1812]

Congrats on the new brace!!

[@beautywearsboots6458]

I hope you were able to experience the therapeutic horseback riding program. I volunteered with one when I was in college at it was one of the best experiences of my life

[@Joy.Elizabeth]

Congrats on the new brace!! I'm so glad you got some great sleep w it too!! I know how rare that it for us w chronic illness!! N omg showering.... I'm totally w you there!! We gave me a new nice summer haircut last night so of course that meant instant shower after and I actually kept a fan in the window(facing in) n I only hit the shower wall 2x!!! Normally it's way more lol we have to work on getting me a shower chair but we're in btwn places right now so it's a pain! But I totally understand what u mean. Congrats on your new feeding pump too! It sounds like a much better one! 😃 Just wanted to say that you're awesome, I love your attitude towards everything, like how you were tired n late n that's frustrating(def understand!) And most ppl would stay frustrated but not only did you say u had to get your head in the right place but ur heart! That's a great way to approach life! Thanks for sharing it w us! Hope you're having a terrific Thursday! ❤🌸

[@BaileyVaz]

Pretty sure this was the first video of yours I watched!! So worth watching again. Also, super jealous of your new knee brace. It looks amazing. I've taken too sleeping so oddly because of it lower joints.

[@christinadoherty3212]

+Bailey Vaz ❤️ Brace envy... only us 🦓 hahaha But seriously, I really hope that you can get some relief! I know how hard that is! Sleep should be restful, but I just wake up more sore than I went to bed

[@chauna5413]

Oh wow Hartford is my birthplace I live in Florida now, you would hate it here it's so hot lol. Thanks for the links! The physical therapy camp sounds cool I'll tell my colleagues about it maybe we can volunteer as therapists

[@beccaemily5171]

DUDE! my mom works at MOOG, the company that made your new feeding pump thing! That's awesome! My mom makes stuff more for space exploration but still, that's cool. I didn't know my mom's company made stuff like that too. Since they make stuff for space I never considered this

[@beccaemily5171]

I also know this is a week late but since im familiar with the company i can try to figure out your bag problem for you? unless you already got it figured out with your normal backpack all good

[@christinadoherty3212]

+BeccaEmily Hey, that is incredibly cool!!!! Tell her I love the products so far lol. So much better than what I had before. I am making it work with bags. Idk what the heck they sent me, but it was NOT for that pump hahaha

[@beccaemily5171]

Someone probably just messed up the order or something lol. I'm glad you're making it work though! Those leg bags you've been using for it seems like its going awesome especially for your back, as well as a bag that works for the pump.

[@peachi3sweeti3]

I was wondering if you were okay! I hope you had fun at camp! 💖

[@ninamayer9254]

I also made my backpack work for my feeding pump loo

[@madison8568]

I just switched to the Infinity pump about 3 weeks ago. I had the Kangaroo Joey for the past year and a half before that and the pump sets were constantly dislodging and the top door wouldn't stay closed anymore. So I needed a new pump regardless, but I requested the Infinity pump because I had heard nothing but good things about it. I love the Infinity Pump! It is so much lighter and more compact then the Joey. I was already using the 500 ml bags for the Joey but I like the shape better of the 500 ml bags for the Infinity pump and also how the lid screws on more securely. There are benefits to both the Kangaroo Joey and the Infinity Pump. The pros of the Joey is that it has a feed and flush bag option (for people who need the extra hydration), it is more user friendly, and It has an autoprime option. The pros of the Infinity pump are it is lighter, smaller, and quieter. The cons of the Joey are that it is loud and heavy. The cons of the infinity pump is that it has no feed and flush option and no autoprime. I happened to have a hospital stay 2 days after I got the pump and I brought the pump, the bags, the pole adapter, charger, and formula(I am glad I did because most hospitals don't carry Nestle and the one I was at didn't and abbott has no vivonex equivalent). The nurses loved it. However, I tell people if you are only doing night feeds, in a hospital setting, or the person you are feeding isn't ambulatory the Joey is better. However if the person needs to feed 24/7 or the majority of the day or is a mobile baby the Infinity pump is the way to go. Since I feed 24/7 the infinity pump is way better for my needs. I have always used my own backpacks. I bought a $20 cute fashion backpack that works perfectly for all my needs, tube feeds, central line supplies, TPN/IV fluids, and wallet.

[@billiebluesheepie2907]

I had a brace exactly like yours and I loved it. ...until I had a bad fall (I went lightheaded and lost my balance) about two weeks later and it snapped roughly where the knee bit was (...and I just sat on the floor and sobbed as it had taken me about three years to be referred to an orthotist - I live in England and we have the NHS but you have to be referred, and you have to get that from a GP, which is like your primary care), I took it back and they said it couldn’t be fixed and they wouldn’t let me have another one, (to stop me from hurting myself). I think that they don’t understand that we need to be as mobile as possible or we lose the strength. I really enjoy your vlogs. Have a great camp >^•^

[@nikki10114]

ur looking healthy girly im so happy for u any medicatio s for pain and swelling that you reccomend for mcas and eds related surgeries?

[@kamcs]

Mary from The Frey Life channel has the exact same pump, so maybe you should message her about the bag she uses :)

[@SY-gx1xz]

I have marfan syndrome with hypermobility so we're like cousins. I hope you do well with your brace

[@Sarrianna1001]

Oh hey I work there! Well not that one but a one!

[@faithgrace3277]

I am looking for knee braces. What is the name of yours please? Are you still using this one? Are you still happy with it? Is there another brace you would recommend? Thank you so much. God bless.

[@533134]

What is the band hanging from your shirt?

[@danyella1579]

Hey christina! Your skin looks so nice! Do you use skin care products?

[@ZijnShayatanica]

I know for a fact that she's obsessed with Lush & almost exclusively uses their products. I don't know exaaaactly what she uses for her skin, though I doubt she uses much. We know how her immune system likes to react to pretty much everything :P

[@BaileyVaz]

She's shared some of the masks (lush), lotion (eucarin) and wash (cerave iirc) she uses. A toner my sensitive, picky skin and I love is witch hazel. It's pretty cheap and just 1 plant. No added manufactured stuff, which is extra great for sensitive skin and allergies/asthma! (and I have both)

[@xirisx1988]

I hope 'sleeping' Christina will not unlock the kneebrace.

[@Rehptawr]

Omg! At the beginning you gave a tip which is wear your clothes at night so you wake up and your clothes and this is a tip I told my friends for when it's cold outside. Cause taking off your pjs and putting on clothes gets me soo cold. And as I told my friends that my teacher was like really? Thats disgusting Excuse me? But that was junior year of HS and I'm a sophomore in college so it's no biggie but still. After that year she moved to be with her long distance boyfriend and we got a much nicer teacher. (Cause its a class I took Junior and senior yr. We had an on campus preschool it was a lot of fun)

[@faeriesmak]

Rehptawr I thought she said that you should lay out your clothes at night so you can just put them on in the morning...not wear your clothes all night long when you sleep.

[@auradragonfly]

I also heard wear them like wear them to sleep in..."so you can just roll out of bed." To quote Christina.

[@faeriesmak]

Jessica Tieking I am going to have to rewatch! I probably misheard!

[@dawnkeith4444]

I have the same brace

[@lisawierzbicki4994]

Love your videos, Christina! I've been working my way through all your videos and I learn something new with each one. I was wondering if your physical therapist would be able to give any other suggestions for physical therapists (maybe like a database??) who are familiar with working with EDS. I'm in NJ and I'm having trouble finding one. God's blessings to you, sweet girl!💗

[@kaylabarnes]

Is that the pump Mary Frey uses?

[@alyssawssinging4039]

That's a good idea just put your clothes on u wanna wear before then roll out of bed 👍🏽👍🏽👍🏽👍🏽👍🏽👍🏽

[@amirae.7295]

I live in new york too! (nyc) it would be awesome if we ever ran into each other lol great vid

[@Hbh250]

Ahh, is that Garden City, I spy?

[@chloeswofford8100]

I love u and your so strong but I’m scared I am 14 years old and I have Eds and it’s slowly starting to take over my life and everyday I can just see it getting worse and I’m in colorguard and I struggle with keeping up because of my EDS

[@christinadoherty3212]

I’m sorry you are struggling! I know how hard that is. And I know how scary it is, especially if you see people who have complications like me. I was very intimidated the first time I went to a conference and saw all the different presentations of it. But that is the thing, there are SO many different presentations. I know many people who live pretty normal lives or people with different challenges than me who never end up with my problems and I don’t end up having theirs. My best advice is to not get too worked up over the future. It’s true that we don’t ever know what the future will hold, but its not worth stressing too much. Enjoy the good moments. I hope you are able to keep up with your color guard. Don’t be afraid to speak up about your needs. I had a note in band that I didn’t have to attend parades. I got to go to practice and learn the music and other performances, but I wasn’t forced beyond my limits.

[@alyssawssinging4039]

Hey

[@mariadelpilardejuangracia8133]

Soy una seguidora tuya desde hace poco. Soy Española por lo q desconozco tu caso. Que te ha pasado? Porque estás así y llevas tantisimos aparatos? No puedes comer nada de comida natural por boca? No sé inglés ni lo entiendo. No sé si tú sabrás español para poder comunicarnos y q me informes d tu enfermedad. Desde aquí donde vivo Vitoria t deseo mucha fuerza para seguir adelante campeona!!!!!! Un besito.💪💪💪💪

[@Stress-relief-insights]

Looks like your latest blog isn't working hun, just thought I'd let you know. With love Nicole from NZ

[@lauraelisee]

The Frey Life