Vlogging with EDS: New Year, New Things | Week 114

[@prairiemomof2]

I really appreciate your discussion (at 30 minutes in) about family roles, and tag-teaming and the struggle with trying to function as a family unit, afterwards. You are a very wise young lady, Christina. I am very thankful for you, and grateful for your vlog.

[@julieannemichelle]

I can’t begin to tell you how much I enjoy your channel. And Christina, I am so happy that you are ok.❤️

[@spinstercatlady]

I agree that making your room/home organized and beautiful is so essential for happiness! My bedroom is my sanctuary and because I spend so much time in it, I've invested in things like a really great mattress, super comfy bedding, pretty nightgowns, etc. It makes having to be in bed so much, much more pleasant! Best of luck with your decorating goals ❤

[@julieannemichelle]

Your new light is beautiful!!

[@babybluecheeks]

Your Dad is amazing!! Wish I had a Dad like him xx

[@rachelchristensen9326]

babybluex I think he broke the mould because he is so amazing! So is my dad but he’s got about 20 or 30 years if not more on Christinas Dad... but his heart is amazing

[@TeddyCrochet]

Always thinking of you girl! Was wondering about Lauren too. I'm headed to Maryland from Florida by myself next week for my surgery consult and so nervous about the toll the trip will have on my body. Whenever I need strength though I pray and I think of my fellow EDSers like you just out here fighting. ♡

[@darkbluematter1753]

Amanda M. good luck on the trip! Traveling alone with a chronic illness is so hard. Sending you strength and good thoughts!

[@darkbluematter1753]

That light is gorgeous! My mom loves a game called Design Home, which is an interior design game, on her iPad. The way you set up Alexa to help you is so clever! Weaning down or off of benzos is so hard, glad you decided to take your time and wait until you are strong enough.

[@kelseck]

My Alexa heard you and tried to turn on your oxygen as well...unfortunately she couldn’t find it! 😉😂

[@johnconstantine840]

Great video you are inspirational

[@sunnya8]

Thank you for saying there isn’t a lot of stuff to support adults, I feel this so hard. Even some of the stuff on IG where people give blankets the cutoff ages are so young.

[@ConestogaCreek]

Wow good to see you back

[@jimslineyjr]

Hi Christina, I luv your idea of making a charity that spruces up the bedrooms of people who are on chronic bed rest. I think companies can easily donate items (lamps, posters, candles, speakers, tapestries, etc) and even things like an Amazon Echo (like you did in the video) is brilliant. I'm happy to talk it out, think it out with you.

[@penelopepolinsneemeyer4757]

I always love to see your videos, Christina xxxxx

[@meiraloraduncan8953]

I love your new light. Gorgeous.

[@rae1957tn]

I doubt if you see this but I miss your videos so much I’m rewatching

[@NorseButterfly]

2019 is going to be the year of answers for many of us. I have to believe that!

[@BornAgainFarmGirl]

Hang in there Christina 🥰🥰🥰🥰 !

[@imthinkingmaybe2615]

I remember that jerk and spasm motion well. My daughter remembers it better. I was stirring spaghetti sauce, had a jerk and hit her right in the face with the sauce. Thank goodness it wasn't hot yet. After all this time I still get them and daily spasms. You just never know what nerves will do.

[@janelkuszewski3058]

Life is a process and we all understand *hugs*

[@Boddah.]

Powerful Christina.

[@kelseyl6537]

I love the Silent Knights! We also use them at the hospital where I work for crushing meds as required.

[@elizabethb1096]

Lol dads Boston accent! :) stay warm it’s freezing in ma ain’t it. Fricking -20° with windchill Also you should get a roomsketcher account it’s free addictive and lets you design spaces

[@hitchinaride94]

Oh my gosh, Christina, don't eat leftovers! To me, leftovers are worse than some high histamine foods. Even when my freshly prepared hot food gets cold I have to stop eting it at a certain point because my symptoms start to show up. I also really get the bloating issue. I'm bloated every day, I think it's just an EDS thing, less gut motility/constriction and therefore less enzymes and more bloating.

[@christinadoherty3212]

It’s such a struggle! It’s easier now that I can eat larger quantities. This was a month ago real time and i’m getting used to my limits. I don’t drive so it’s been interesting trying to get single serving organic meals made. Im sure im preaching to the choir. Im burning more calories soaking beans than I am eating them 😂

[@hitchinaride94]

@@christinadoherty3212 Yes, exactly, it's so hard. I make food every day, eat a more or less small amount of it, and then someone else in my family has it as leftovers. Not gonna lie, I'm really jealous cause I make quite good food :D and would love to take it to university the next day, but I just cannot risk having a reaction at uni. At uni I can't eat anything really other than stuff low in histamine that has never been warmed up, while everyone else eats whatever they want. But honestly, I'm not really complaining because you for example were not able to eat anything for such a long time.

[@chemicalbreath]

Strong is beautiful. You are the strongest person I have ever known. Prayers.

[@anevenbluerjay]

I get what you're saying about always having to leave- I go to college out of state, though I know that's not remotely as severe a situation as sudden hospital stays. Can't start large hobbies, can't join any weekly activites because I'll only be there a fraction of the time, can't get anything new because my entire life has to fit into a suitcase every few months, etc. It's hard being an impermenant feature of your own environment.

[@TLynch-pf3ek]

Thank you for sharing your story- it is nice to know we are all in this together. Best wishes ❤

[@LifewithErin777]

Great to see you, glad this week was better then the last week 😃❤️

[@emporesszia]

That light is beautiful! Love it!

[@ashleyv868]

You should do that room idea for all ages!!!😀

[@greyson9283]

you are soooooooo right about the tired and fatigue thing!! hope everything went well w/ your week in RI. much love

[@amylynnholzhauer6482]

Love your vlogs and updated always in my prayers

[@rainbowzebra260]

That NGO/Charity idea is EPIC!! I really hope you can make it happen!!!💜💜

[@JohnAdams-rm7zm]

Thank you for sharing your life, it really helps me to see you with such a powerful positive attitude👍🏻 No matter what💫 Thank you again JOHN

[@LifewithErin777]

You are really in my prayers, I can’t imagine what you go thru ❤️❤️

[@The-ii5mj]

I'm so excited for you getting to eat!! Heading in the right direction!!! Happy New Years to you & your family!! * I love your idea about the non profit but also your dream.... nothing is impossible!! I loved watching you light up while talking about it!!

[@533134]

It’s how your brain works, Christina, do what works!!

[@charmedplate4605]

Happy to see your smiling face again & u are such an amazing soul hopefully u heal & recover soon zebra hugs💞

[@francesheaton974]

missed you and checked for you every time to see if you were on line and thought its your sister's time for attention. your amazing! do what you need to do and love to your sister

[@curtisbemis6640]

love your videos christina and so very happy to see your recovering so well and eating again , must be amazing to be able to eat after so long !!! and a charity is a great idea!!

[@eveenz7165]

Your PT is the best in the world. I loved watching her speaking at the conference. I have thoracic scoliosis and twisting away from my legs. I live in NZ and they don't know much at all about hypermobility syndrome (?EDS). I was told it is due to muscle spasms so just have to live with it with no help. I have bilateral foot drop and hyper!!! Patella reflexes. Walk with 2 crutch as my balance is off. I get really bad vertigo if I don't tell my brain I am going down or up a hill. Plus getting off a bus or train I have to stand until the dizzy vertigo passes. I get jerky movement when I lye on my back. A limb will jerk and then my whole body jerks with them fright of the jerk. You are amazingly strong and wise beyond your years. I admire you so much. I hope this year be full of happiness for you and your family.

[@travis358]

Hey its inspiring to see you remain so positive despite all the negatives you look beautiful by the way ❤️

[@BeverleyButterfly]

Happy new year! I’m thankful that though you have been through so so much it has taught you to pay attention and listen to your body more and that’s an important thing we all forget from time to time xx

[@jamerayton50]

Bless really enjoyed your vlog, was really good to catch up with how you are, you've come on such along way, keep up the hard work your doing well, so pleased your getting better say hi to all your family and look forward to seeing your next vlog, x

[@Madi-ke9ke]

You don't have to have a degree in interior design, you can just set up an online "store" and go from there! Prior to getting funding, you could post links to things you find cute and medical friendly, and if they are affiliate links and you get a little cut from people shopping, then you could use that money to start up. I've recently been diagnosed with EDS and I am still in the process of being evaluated for MCAS, OI, and GERD/gastroparesis. My bedroom has already started to change so much with all of the medications and supplies and different things. And I'm still at the tip of the ice berg. Even if people were able to share pictures of their supplies, rooms, etc. in one place, it could be really inspiring for people working to organize and store all of their things. You could also have a place for people to share how they make themselves feel cute and put together despite sickness, braces, tubes, etc. This would also be really helpful since there isn't a lot of info out there about how to style things like that. I hope you're doing well and getting along well with PT!

[@kimleon-guerrero9980]

Love you Christina. ✨💖✨💫

[@Rtytanicj]

Most therapists won’t even touch me. Too big of a liability! I wish I could find my own trish!!!

[@Stress-relief-insights]

So wonderful to hear from you sweet Christina. I really hope your energy starts to return to "your normal" very soon. Take care & just know you are in my thoughts. I'm on a very strict low histamine diet also & yes left overs are the enemy! 🙄😱 It's really tricky to figure out what to eat.... BUT it's enabled me to cancel my feeding tube placement at this time by changing my diet.... I'm super happy about that!!!. So crossing fingers you will get stronger & be able to eat the foods I am soon. I'm on plant based 1/2 liquid & 1/2 soft foods & doing much better than before. Big hugs beautiful ❤ Love Nicole xoxo

[@navygirl54]

When you said echo mine heard it as well. Lol. It's a good thing my light I not named the same as yours

[@TimeJamanthaMakes]

I have a degree in interior design. I want you to know that it isn’t necessary to get one. I can see you calling yourself a Medical Decorating Consultant. You can work from home online. I don’t know how charities work, but maybe grants can help? This is all stuff is all not what I am doing with my degree, so take it with a grain of salt. I love seeing your vlogs, I feel like we’d be good friends irl. I hope you are feeling better and healing well.

[@kasee94]

You are going to bloat with starchy carbohydrated food. Expect it, and expect it to hurt at times as well. My suggestion (of course your body, your health, you know you and your limits) but eat as much as you can and don't force yourself to over eat just because you feel like you can or you feel like you have to, because that's going to make you feel really really bad. cauliflower is also a good low histamine food and you can blend that down to a rice consistency (before you cook/steam it) as well if you'd like to try that, totally just a suggestion as I said you know you

[@kecrn4132]

Kasey Shaw - cauliflower causes way worse bloating that starchy carbs!!

[@kasee94]

Kelly Cannon I was suggesting it because it’s a low histamine food and has a different feel to mash. I didn’t say anything about it being none starchy.As I said she know her and her body and it was just a suggestion. And just so you are aware a cup of cooked cauliflower contains 2.6 grams of total carbohydrates. 1.4 grams of dietary fibre and 1.3 grams of natural sugars and almost no starch actually the cauliflower is used in low starch diets. Sooo if potato contains a higher starch value than cauliflower how does cauliflower make you bloat worse?

[@kecrn4132]

Kasey Shaw - because starch is not the only thing to cause bloating!! Most veggies cause the worst bloating.....

[@franzpeters3824]

@@kecrn4132 cabbage and beans always cause bloating.

[@meganlovesdisneyandcrafts4780]

YAY 🍠! That balance of doing things and your body yelling no. I’m an introverted person as well and just being there is exhausting. Take care in this ridiculous cold! It’s soo not fun.

[@kaylabarnes313]

Breathe in, breathe out. Lean on God. Relax. Take your time with everything. Put the vlogs off if you can't handle it honey bear. Hi Elke and Lauren!!! Hi superdad D. (Sorry, Dont know your name.)

[@HannahMcNabb-2024]

I don’t know if you’ll see this since it’s been a long time since this vlog but what you said about being on bedrest for an extended period of time really hit home for me. I haven’t been officially on bedrest for surgery or any reason, but I’m practically bedbound I rarely leave my bed and when I do, it’s just to go to the living room for usually no more than an hour if that, I can’t go outside bc of allergies and all my other symptoms. I’m only 23. I’ve been this sick since the beginning of 2023 (actually a little less sick then I’ve gradually declined), I’m in a wheelchair every time I leave my house which is only for Dr appts, I can’t recall the last time i went out for something that wasn’t medical..and every doctor gaslights me or dismisses me, and then the trip and flare from said trip was all for nothing and we can’t afford better drs right now because I can’t get approved for ssi, I’m officially diagnosed with iih and epilepsy, I don’t have diagnoses of EDS or MCAS or pots but I suspect I have all 3 because I have literally every symptom of all of them. I literally anywhere I look in my room i see meds, meds that barely keep me to the point of quality of life where im not literally sleeping 24/7. And there’s so many and they barely keep me there even. Sorry for the vent and how chaotic it is, I’m just at my wits end and what you said just hit me right in the spot where my feelings just spewed lol.

[@christinadoherty3212]

I TOTALLY get where you are and It feels like an impossible hole to dig out of. I wish I could go back to myself during those years and tell myself that it would eventually get better. I feel so lucky to be able to say that after everything. There is hope 💕

[@rae1957tn]

Please rest and take care of yourself that is more important than visiting with friends or vloging. I miss you that’s true but I want you feeling better. Your dad is great! Love the new light. I have a system for my meds because I kept forgetting what I took and when it works for me .

[@samster4955]

In regards to your room take it one day at a time. do one drawer on a day that you feel well and don't try and do your whole room in one go that will set you up for disaster small accomplishments are more meaningful than big ones

[@alexandrac591]

Can you mix a little ginger into your sweet potato? That might help your gut feel better.

[@sandywhat2429]

Imagine if you had no family. To help you get all these things. ❤️

[@ebonylowe6171]

Christina, I hope you are doing better. Christina, have you looked in to medical transportation through your medical insurance. I get to get ambulanced to and from the hospital when needed. They do that because I am on oxygen and need the oxygen needs. You have various medical needs as well. I would call your insurance. It might make it easier to travel.

[@kaylabarnes313]

Maybe make the sweet potatoes like you would mashed potatoes? A very tiny bit of butter instead of olive oil?

[@Jlynne3323]

I have EDS and do design (with major surgeries as well)...you can do it! :)

[@Rtytanicj]

I would die if you redid my living space!!!!

[@sarahwithstars]

Sending so much love to you darling, and to Lauren of course, those medications are for facilitating physiotherapy and recovery darling, don't rush yourself off them or you will just slow your improvement and your ability to work in physio because of pain limitations So proud of you angel xxxxxxxx be kind to yourself xxxxxxx Message me anytime xxxxxxxx as your sis can xxxxxxx

[@alyssawssinging4039]

Hey Christina

[@elmachoxp]

❤️ love your vids!

[@samster4955]

I'm the same way I'm a textbook introvert as well being around people drain me physically so I always have to sleep after seeing alot of people in one day. Given I am a college student and hang out with my esa all the time I set a goal for myself to talk to at least one person in my classes each day as a goal nothing drastic and keeps me talking to other humans.

[@Tiffairishgirl]

Hehe I’m an introvert who reads those books about introversion 😉 and I think it’s expected to give yourself time! That’s a beautiful light!!!!! Love that non-profit idea and the focus on teenagers and young adults. 💕🥰💕 Yays on being super organized Lol 😂 really glad my echo didn’t listen to you because she’d probably turn my light on or argue with me that it wasss off lol 😂 A good supportive family is awesome and yep I’m feeling that for 2019 as well even with everything health stuff going on

[@rachelchristensen9326]

I thought Tricias video was fabulous! Good work girl/Super - woman..

[@rachelmartin3631]

I don't know if this will work with your mast cell but maybe you can try smoothies at some point. You can either buy them at your local grocery store, or make them yourself with the foods you can tolerate. I like Bolthouse farms, they have different kinds. I like the Mocha or Chocolate but that maybe too sweet for you.

[@christinadoherty3212]

Definitely want to try one! I just can NOT figure out what to use. Berries, bananas, and yogurt are all big mast cell “no nos.” Soy, dairy, and nuts are out for now. Im allergic to Chocolate and caffeine (true allergies) and react to vanilla (wondering if its more the prep. Maybe I could buy a vanilla pod). Anyway, all that to say, I have very few options. But I’m thinking maybe rice milk, chia seeds, and mango? I could always pop it in the ice cream maker

[@polarbear2394]

@@christinadoherty3212 would oat milk work? I hear it is a good substitute

[@rachelmartin3631]

@@christinadoherty3212 That actually sounds good. I'm not much of mango person. Making it yourself is actually better as there are no preservatives.

[@kirstencourtney8792]

What about mango sorbet? www.asweetpeachef.com/mango-sorbet/

[@rachelchristensen9326]

I would give anything for the Amazon Echo or the Google one - but literally every cent of my pension goes towards medical costs. Often I don’t even have money to eat: I will literally go days with nothing.. so Amazon on Google will have to wait!

[@skrodlada]

I'm curious, why don't you move houses to be closer to where the PT is better?

[@adriansperlich7519]

God bless. :-)

[@533134]

Hi, Christina!! Have you contacted Fighttobreathe to see if she knows how to set up a charity?

[@shawnresor498]

Can you show us a close up of the picture behind your bed? Looks like a couple from the swingin' 20's or 30's...

[@loiscassels8966]

Shawn Resor It’s actually a scene from Cabaret with Liza Minelli and Joel Grey.

[@franzpeters3824]

You look like a stormtrooper in starwars.

[@zyciewusatvbygosia8880]

after i had stomach inflammed and duodenum for few years my food was not digesting well but i had to eat, and i remember also that it was giving me bloating and pain, or just bloating and fast heartbeat and dizziness, but i prayed a novenna on beads 54 days to Queen of Holy Rosary of Pompeii and She healed my stomach withhin year or longer, maybe 2 years and then it is almoust normal again, only one thing is sometimes i getdizzy, and heart rate higher still. Now I pray Novenna for few ppl and you included to get healed or to get better.

[@rachelchristensen9326]

I am actually legally blind and I know what you mean - although you can see - literally, but it has to be in your line of sight. Unfortunately I don’t really have a line of sight but I get by... speaking of not being able to see properly when you were talking about things around your bed what are you using as a pillow? Please please tell me! This is embarrassing but I sleep with a teddy bear because it keeps my arms in the right place, and also one of those long cylindrical bolster pillows between my knees: okay I can sleep without the teddy bear but not the other pillow... I did try a pregnancy pillow but it was a bit of a cheap one, so I’m still out on that one. Happy New Year KZbin sister. Big gentle Hugs from 🇦🇺 Australia 🦋🧚🏼‍♀️⭐️🌈⭕️❌⭕️💜💚💜❣️

[@kirstencourtney8792]

It looked like a stuffed elephant to me. 😀🐘

[@julieannemichelle]

Christina, I was in Texas visiting my daughter and my grandsons and the oddest thing happened with me and “ Alexa “! I was talking with my daughter and I said that name and I don’t know what triggered this but all of a sudden Alexa started to have a conversation with me by asking me a lot of questions about me and my interests. It was so weird! Has that ever happened to you?

[@zyciewusatvbygosia8880]

also maybe take some probiotics to get some intestinal flora into system- as i had bacterial imbalance I think from taking supplement in 2010 begining it was coloidal silver and then few months later i got burping all time 24h and reflux that was non acidic and that infalmmation of stomach and duodenum- so then I also was taking some probiotics, like primadophilus optima from ebay but not sure if they were properly shipped as i was living in poland then and they shipped from usa, i also was taking other kind of probiotics like bulgari someting they say its good for colon.

[@christinadoherty3212]

Actually I was majorly on top of that this time. I was on lot of probiotics to try to take care of my gut... I was so sick for weeks we were hours from hospitalizing me. Then I just tried dropping the probiotics to see what happened, and i was INSTANTLY fine. I used to take em everyday, no problem. I guess that goes to show that too much of a good thing is possible, and our gut flora is a very fine balance

[@yogabirds]

I’m so proud of you! You’ve come a long way and even though realizing how far you still have to go can be daunting your progress is nothing short of miraculous! Our bodies have to genes that “code” for metabolizing histamines. They are HNMT(histamine methyl transferase) and DAO(diamine oxidase). Most of us have a few mutations in these and that combined with excessive mast cell mediator release makes eating hard. Swanson makes my favorite diamine oxidase(DAO) supplement and taking it 30minutes before eating might really help with food related abdominal discomfort. You may also want to try a papaya digestive enzyme. Don’t take both right away though or it will be hard to pinpoint reactions initially. Most of us need to keep fiber to a bare minimum I ❤️💗❤️💗😘💗😻🤗and since I’m throwing that out there. despite popular belief bananas are really hard to digest. I love the room makeover idea for adults!!! You can make your room the look what we can do room! If you came up with a creative you tube channel, and have 1 or 2 nominees post why they would love one. Once you have a theme for the room, people could send in donations and we can reach out to businesses to donate whatever else is needed in return for advertising. Once you have everything, you could find in each town to set the rooms up!

[@tomelinebombadil8325]

First, you are gorgeous!!! I love watching your channel. But not to be rude, but youtube is weird on my cellphone and is it just not showing me episodes or doesn't she vlog right now? If so, I hope you are fine!!! And i have a question: You /she once had a video with Mary from fry life and another person who was sick (black hair. Short hair I think, a bit of a smaller person, she had a stirred Oli boy in her backpack...) anyone know about this video and can help? I can't find the black hair girls channel anymore, after I had to reset my phone... I would be very thankful!!!

[@libbygibson5612]

💕💕❤️💕❤️💕

[@HeatherBryant22]

Contact Michelle at Durable Brains Foundation. She has chiari and EDS, has been through many surgeries etc. She and a friend started Durable Brains to help patients get to a chiari specialist in NY. Google Durable Brains, I think they even have an IG page. You will love her!!

[@kirstencourtney8792]

Do you like Mr Kate channel? I wonder if they could help you with your dream. 😍

[@shawnresor498]

Have you asked your physical therapist if she knows anywhere you could stay for a week close to where she is? Is there any way insurance would cover even part of your travel expenses? Is there a Ronald McDonald type place around the area? If I lived close I would open my home to you n ur mom. I bet you have subscribers in the area and Altho it seems awkward n creepy I'm guessing someone would put you up for awhile..

[@imthinkingmaybe2615]

I think that is an excellent idea. As I was watching this I was thinking I wished they were coming my way I have the space for them. I think it's worth a try. It never hurts to ask.

[@mimis-girls7935]

Don’t you think her mom needs to stay home and care of Lauren? If she and her mom went to stay near her PT what would happen to Lauren?

[@imthinkingmaybe2615]

@@mimis-girls7935 That is something that I have given up on. Did Lauren push her surgery back because her sister had more surgery. I agree with you but have been in the minority and other followers were not kind to me. I don't know how this whole thing is going to work out.

[@shawnresor498]

@@mimis-girls7935 it would only be 1 week. Lauren has her dad there and has survived much longer stretches away from her mom.

[@lukeism2]

Have you ever thought about countering the catabolism of steroids with some anabolic steroids!? That’ll help your rehab go real fast

[@meolahresseh5031]

In Jesus name I declare life into your body now. Every sickness and spirit causing it leave now in jesus name. God bless you