Vlogging with EDS: A Week of Chaos and Uncertainty | Week

[@WhatAboutJacob804]

Watching you struggle to talk sent my nurse panic alarms off, it was amazing to see how much things changed after Trish. I have been checking up and thinking about you and your surgery daily! Also, I am TOTALLY stealing the idea of using the little sifter for the bubble bar under the water... genius!!!

[@sheilas1283]

Poor Christina! What a week you’ve had. It must be really scary losing memory like that. It was scary enough watching you struggle to talk. I do hope you start to feel better this week. Love from England. X

[@chemicalbreath]

Praying of you and your sister every time I think about you both.

[@jimothyjamus1023]

I didn't even notice your neck brace at the beginning of the video, it really is minimalist, cool! That's really scary to be losing memory like that, I'm gonna pray you feel better and get answers soon.

[@InviDoll]

Remember that you are a resource to your family - especially your sister and nan right now!

[@julieannemichelle]

Hi Christina, I watch your vlogs and today I can relate to your voice over and audiobook conversation. I was born legally blind due to my albinism. I’m currently attending the Braille Institute and I’m now learning different things that relate to my low vision. I just started going to Braille in the last year after a very bad break up with my loser ex boyfriend. Learning things later in my life that I can totally relate to later in my life has helped me heal. But there is so much more for me to learn. I never went to a school that was equipped for my disability. You are such a sweet lady Christina and I only wish and want the best for you and your sister. You do have a very good view on things and being an optimist is so important for coping. Please take care of yourself.💕🌸

[@pinktsune]

Hello Christina! I just wanted to say thank you so much for the EDS awareness bracelet! I don't know exactly when my came, but I got back from my trip last night and a package from you was in the mailbox! I love the packaging and the little note you included. The zebra-inspired string is so adorable! Thank you so much, keep doing what you're doing and stay strong

[@cruxandcarnage]

I don’t have chronic illness but had cancer. I know how it feels like to be in and out of hospitals for being very ill. I also had a high heart rate through out chemo. Beta blockers would suck cause I have Low BP since I was young. I would stand and my HR shoots up. Or when I would eat, it would also shoot up. But after a couple weeks after chemo my HR would normalize. I can’t imagine what you guys are going thru. Stay strong ♥️

[@loopzcreate99]

Sorry to hear about ya Nan, and health problems with you're sister, you parents are busy bees. You so right when you don't have ya team with you, and it's someone else, it's complicated as they don't know the health journey, complications, questions need to be asked etc, so I nodding my head when you said all that. Honestly gotta give credit to you, each week uploading weekly vlogs, I don't know how you do it, but just know, I appreciate it, and so many others do like watching ya vids

[@joeyocean6233]

I know! Exactly how you feel. I had a neck brace for 6 months. It's off now. Has been since last year. But, I still get Kinks in my Neck when I look left to right. I hope and wish you a speedy recovery. #Alaska

[@love2cats]

It's breaking my heart to see you struggle so. Yet, you have such a generous spirit and car so much for others. You continue to inspire me.

[@shutupraven]

I have the same problem with excessive skin dryness and a bunch of skin shedding! I always wondered if it was an EDS thing!

[@stretchkitty21]

Emily Fortin me too. Soon as I noticed it's not typical for most people I wondered if it could be EDS related.

[@SopranoFantab]

Hi Christina. I just wanted to offer and send my support, thoughts, positive vibes and prayers your way. I am sightless; therefore, I use VoiceOver with my Iphone 7+ in combination with a Braille display. I’m glad you’re finding the VoiceOver feature helpful in your current situation. I’m just glad you know about it! Thanks for sharing that with your viewers. People should be made aware of all the things that are available to those of us with physical challenges and/or chronic illness. May God continue to bless you and give you the strength, grace and guidance to get you through all the challenges. My general awareness of how the body works has been enhanced thanks to your videos and the ways in which you share your experiences. With very best wishes. Michelle

[@eldoran18]

I use smart crutches and I love them so much. Saves my wrist and shoulders. Definitely give them a try if you get the chance.

[@alysonp5844]

Bless u sweltering yr having a pretty up and down week.. sending hugs lovely. I have a rare blood clotting condition.and had multiple PE's and other costs over the years (since I was 24 and I now am 36 this july) I have been doing blood thinning injections since I was 24 and had the multipul PE'S all on the same lung. I don't mind needles and have loads of tattoos, but doing the injections do get sore after doing them this long and I get lots of little lumps and bad bruises but I need them and they help stop me getting clot even though I have had a few other clots while I am still on the injections. Still small risk With being on the thinners to get clots, and i have had other clots while being on the thinners aswell.... sending u loads of healing loveling xxx xxx

[@contimusic8357]

Love it, simple and pure!

[@jamerayton50]

Awwww I hope you all feeling better soon, you are all going through it that's for sure, love to you all x

[@loiscassels8966]

❤️❤️❤️❤️ Trish. So grateful you’ve got her. ❤️❤️❤️❤️ you, too.

[@NoelSeymourEST2023]

Praying for you and your entire family! I just had a surgery and it’s a long lengthy painful recovery and I feel bad my family has to do everything for me. I’m 22 and feel like I should be caring for them now. Sometimes life is hard but we Serve an amazing God who gets us through so so so much! Praying for you!

[@WackyLisa]

So glad VO is helping you. The learning curve annoys me but I’m actually social when I use it.

[@41y554]

Anne with an E is so good! I can't wait for them to release more episodes! Have you ever listened to the Harry Potter audio books? They're narrated by Jim Dale, he does the best voices! I love watching your videos, you are an inspiration!

[@darkbluematter1753]

Ask Mouse I love Jim Dale! I have literally listened to every audiobook he has ever narrated. He is amazing.

[@Luma994]

I am crossing my fingers and hoping and wishing you a better next week and that Lauren get her medicine just right so that she can feel better too. Lots of love ❤

[@lauren3596]

Linda-Marie Hamrin ❤️❤️❤️love you

[@Luma994]

Lauren Doherty ❤

[@LecheVitrineUK]

Sending you love, hope this week is going as well as it can. I tidied my studio yesterday so that I can start making buttons, I'm also making some tiles for my mum's new kitchen xx

[@alysonp5844]

I love the opalite elephant necklace hunnie. I have so so many crystals. I'm talking close on 1000 or maybe a bit more. Also have loads of beautiful crystal beads... But I not been able to craft my hands been so bad. But hopefully soon I can make some healing jewlery again. Wishing u so much luck for this hospital trip and I hope it goes well for u. I will ask to angels to watch over u, to keep u safe and keep warmth and hope in yr heart anf soul. Healing hugs coming ring yr way. Hope yr little sis is feeling a bit better now aswell... my low bp is a hard one to try to control aswell, but add the high hr to it and yr just all over the place or blacking out. Xxxx

[@MagicLuver101]

I have smart crunches and they are amazing! I started with a cane bit that did not support enough and caused to may issues with my wrist.

[@greyson9283]

you are totally right about the sibling thing! i hope everything goes well for you

[@chelsey7312]

So glad to see you using that brace you tested! Hope you're feeling better

[@skye1767]

Thanks for putting out the effort to make this vlog when things are so rough. Sending gentle virtual hugs to you!

[@poppycopper1]

Praying for you n your family. Hugs xxxx

[@adrianaiello1608]

it's so funny that you said when it rains it pours- my mom texted that to me a few days ago after i woke up and texted her at 3 am with medical stuff going on. sending love & prayers!

[@emmalemon26]

It was so sad to see you struggling to talk. It happens to me but I didn't realise how difficult it can be to witness. I hope it doesn't happen to you too often! Best of luck for your trip to see doctors. Fingers crossed things improve soon and they can figure out what's happening 😊

[@NorseButterfly]

I'm really sorry to hear about your grandma😢 It sounds like she's in good hands though with your dad and sister. Lauren, POTS is hard! Every body is SO different and treatment is different for every body. I wish you didn't have to go through this journey, but at least you have a strong support group since you are💜 (and Lauren, feel free to start vlogging😉). Christine, if there's anything other than prayer that you need, I'm just a message away! (You already know MY brain doesn't work well thanks to my issues, so feel free to use my shoulders for support) Safe travels! Love and prayers 💜💜💜 Stay #zebrastrong

[@BLACKOPSMan115092198]

We love you Christina. Amen🙏

[@sixmercer2504]

I have an EDS form of weird narcolepsy. For me it comes with Periodic Limb Movement Disorder, REM Behavior Disorder, Mild Sleep Apnea, and I can sleep for literal weeks. The longest was 5 weeks and my sleep specialist thought I had Kleine Levin Syndrome (Sleeping Beauty Syndrome) which now with my EDS diagnosis is not on the diagnosis table anymore, but it still happens. I'm constantly beyond tired. I will fall asleep mod sentence and I also have something really strange that was also diagnosed during my sleep studies (I've had 5 now), it was Hypertonia. People with spinal cord injuries and Parkinson's or Strokes or Cerebral Palsy have Hypertonia. But now that I finally got the proper diagnosis of EDS type 3, and I have very stiff areas in my muscles with dystonia in my upper back, the Hypertonia makes sense. My body is constantly tense in preparation for dislocations and subluxations especially in my hips because I lay on them and they are so painful. There is a really good article on The Mighty about sleep disorders with EDS and I checked every single box. It was hugely validating, even though I had already been diagnosed with Narcolepsy with Cataplexy, this article explained absolutely every single thing that was in each report (PLMD, RBD, CSA) but didn't explain the Hypertonia, however, I'm a nurse and understand how the body works and although I don't work anymore, there are still a few ideas in my brain that I can kick around and make some sense out of. So I came to the conclusion that for myself, my body never totally relaxes. It's why I have so much sleep paralysis and why I wake up sitting up in bed doing who knows what or slumped over sleeping bent in half at my waist with my forehead on the bed in front of me. Off to my GI surgeon appointment, but I just wanted to tell you my experience with my insane sleep issues that are all related to EDS. I hope you and your sister and your Nana are feeling better and you and your sister most definitely have the most awesome parents ever! Mine is my 23 year old daughter, who also has EDS but it's not terrible yet so she takes care of me. I couldn't do it without her. Take care 🦓💪🤗

[@darkbluematter1753]

So many things to love about the vlog this week! Sorry it was a crazy time though. Sending all the healing thoughts and positive vibes to your whole family. Safe travels and I hope your doctor can get your neurological issues under control. Watching you have that episode in the car was scary. But I did laugh at the lip gloss vs deodorant debacle...at least your armpits were well moisturized, LOL. 💙

[@scorpleeon]

Your family is amazing. Take care!

[@BornAgainFarmGirl]

I’m so sorry to hear your grandma fell and hurt her back and your sister had a scare , goodness ! I sure hope she heals well !

[@Not_a_snake]

I have forearm crutches similar to those smart crutches. I love them. They are called Eurgobaum and come in like 10 colors. Mine are pink.

[@nicolahocking5981]

So sorry you're going thro such a rough time. Hope your vascular neurosurgeon can help. Hope your sister and grandma are doing OK. I actually have the smart crutches, it was actually another patient when I was in the homeopathic hospital in Glasgow, Scotland.(close to where I live) She had EDS and had been using the smart crutches with great effect. Sending prayers, love and hugs from me and Winnie 🦔 xxx

[@navygirl54]

deodorant and lipgloss not bad. My dad did foot cream and toothpaste. Also This past week I got what is called a wet brush. Not sure what you use but wow its so different than others. Not only does it not make me say ouch every 5 seconds its way better on my hands. Hope this week goes better.

[@anikabaddeleyrollingbackwa7341]

I love voice over I use it to help me read papers for grad school. I have cerebral palsy and visual issues from that. I love your vlogs

[@chemicalbreath]

your video quality is perfect

[@HopePorter]

So scary!! I hope that you start to feel better! What a week!!I am new to youtube and also have EDS and I have a video up about it and how I got diagnosed if you are interested in hearing my story ! :) I am excited to connect with other people that have it.

[@penelopepolinsneemeyer4757]

Good luck for this week sweetie xxxxxxxx

[@rachelleeds9804]

Sending love and prayers ❤️

[@shekeyra100]

your so selfless always thinking of others before yourself i was so scared watching you in car its so unfair i pray they can fix what is causing this sending love from the uk

[@chemicalbreath]

Back to your May 7th video 13:19 into the video about taking application for a future husband. If age, weight, ugliness and I live in Portland Oregon is not a problem I would apply.

[@spac3c0ast]

I need to know what that succulent subscription box is called! I’m trying to get into succulent gardening and such. I hope you and Lauren are feeling better too! Many well wishes 🖤

[@christinadoherty3212]

+spac3c0ast Oops forgot to link it! Its “Sucstu” but I think their site is www.succulent.studio/

[@spac3c0ast]

Christina Doherty thank you ☺️ I hope this week is treating you better than your last couple have been ☺️ well wishes 🖤

[@allie4680]

I was recently looking through the WEGO health awards and I saw that you were nominated as a patient advocate?!? Does anyone know if that’s old or current? Because I totally want to vote for you!!

[@meiraloraduncan8953]

How do you protect your potacath, pic line, and feeding tube site from getting wet? I had a really hard time with my pic line because it was very high up on my left arm and finding a way to keep it dry was a challenge. I bought one of those things used to protect casts.

[@ErikaVargasTV]

Your gaze and smile did look dazed or foggy on Monday! I was like?? She okay, she's really not feeling well

[@alexb418]

OMG, I am convinced that your sister and mine are the same person in two different bodies. "Notice me senpai" is something she says all. The. Time!

[@lauren3596]

Alex B 😂😂

[@LifewithErin777]

Your really in my thoughts ❤️

[@DarkFayerye]

Craniosacral therapy is the most amazing thing ever! I have learned how to do it to myself which is amazing.

[@ashleyarrington6684]

tunnel vision is a hallmark of high ICP. praying for you girl

[@meiraloraduncan8953]

I loved Anne of Green Gables too.

[@BornAgainFarmGirl]

Congratulations cuz !

[@BornAgainFarmGirl]

Succulent subscription ? How fabulous !

[@scarecrowmax1192]

I hope that this week is far better for you than this past was. I hope your Nana's surgery goes well and that Lauren is doing better now that she's off the beta blockers and can find something better to manage her health. As crappy as it must have been to have to clean off the lipgloss it was kinda a funny mix up. Aren't the sizes quite different, or did your brain just say, "well this rolls like deodernt" and call it a day?

[@MamaWithAFro]

Yay for your cousin! I was a coxswain :)

[@lauren3596]

Your bath routine is cooler that I’ll ever be;)

[@erika4831]

Maybe you should get your iron checked too if this is an usual overwhelming tiredness. Just to rule it out. Hope the trip goes well & you’re back to usual in no time. Hope your sister is okay too.

[@crimsonrose4648]

Ok I totally thought the skin thing was normal omg. But now that I think about it I'm one of like 3 people in my family who've I've seen have that kind of thing

[@adriansperlich7519]

That was a serious recipe you had going on in that tub. :-)

[@magicalpatterns]

Christina, how do you deal with frustration from being sick all the time. Depression or anxiety? Thank you 🙏🏼

[@DinosaursGoRawrMr]

My mom isn't a reader in fact she doesn't know where my love for books and intelligence came from. But she can never say no to books if we spot one or a few we like.

[@kimleon-guerrero9980]

LOVE YOU CHRISTINA, 💖💖💖💖💖💖💖

[@ashleyarrington6684]

19:28 is literally me.

[@RebelliousStory]

I completely get how it can be weird not having your mom there for appointments. My mom has been my main helper since I got sick and she knows most of my medical history, even more than my husband cause she’s been around longer. It’s always weird when she’s not there to help me remember things. Sorry you’ve had so much trouble with editing due to your sight issues. 😓 As a fellow KZbinr, I just wanted to extend the invitation that I’m willing to help with editing/posting if there’s anything I can do. I hope doctors figure out how to help your sight soon tho!

[@peachi3sweeti3]

Lauren should start vlogging!

[@anne-marijansson4980]

❤

[@gooshiesarah]

Lauren- if you get compression sleeves- text me. I know you would know how to style them... I'm struggling 4 years in... Still haven't figured them out. Also- never take salt tablets with water... learned that the hard way

[@Splashes_]

Sarah Williams dude same. Salt tablets are worse coming out then going down 😅

[@lauren3596]

Oh no now I’m scared to take them 😂 I’ll have to research stylish options;)

[@gooshiesarah]

Lauren Doherty I didn’t have a problem besides for taking them with water. They recommend you take them with juice (dr who prescribed them to me failed to tell me that and then all my other drs went into overload trying to figure out why I was feeling so sick all morning. We changed so many other meds during that time and it turns out that it was the salt the whole time- which dr who prescribed finally told me after 6 months of being sick and thinking it was other meds...)

[@Stress-relief-insights]

Thinking of you beautiful ❤ I'm really hoping you get some answers & treatment for this hideous brain/head stuff.... :-( Big hugs my Zebra sister. Love Nicole xoxo

[@oliverlikescats4736]

The EDS Society's instagram contest confused me b/c I didn't see your entry, but there also isn't a finalist #1 on their page. It skips straight to finalist #2. I still think you deserve it though b/c you're a great person.

[@alyssawssinging4039]

Hey Christina

[@ebonymarie7016]

Have you looked into medical transportation that isn't mom or dad just in case?

[@meiraloraduncan8953]

Where you had to get used to doing things differently because pt changed your perspective and sensation I am the opposite as my injuries got worse I was slowly losing feeling and sensation in many different areas of my body and it can be on different levels that change daily or minute by minute. A slight change in my head, neck, spine can make things a 1,000 times better or worse in a second. It’s hard to describe at times especially to someone who doesn’t understand. I had no clue how many different kinds of nerve pain there is and constantly having to explain to new medical staff that just because I am diabetic doesn’t mean that the nerve pain in my arms, hands and legs and feet is caused by neuropathy, which I don’t have praise the Lord. My Neuro explained that neuropathy feels more like pins and needles but electrified or like fire ants that cause a feeling of burning and thousands of ants going up and down the arms or legs. I have felt that when I had different sites numbed with medication and as it wore off that’s what it felt like. Sometimes I have woken up and my head is positioned strangely and there is stress or pressure on my head, neck, spine and it’s causing pain similar to neuropathy but if I move just a mm or cm and it stops. So for me I relate to what you are going through and can see it from different perspectives and each day is different and discovering what the different changes are is fascinating and frustrating at the same time. I don’t have anyone who understands it and can really relate. My husband gets upset and frustrated and even angry that I have had to go through all of the many health challenges and and idiot doctors who misdiagnosed and didn’t believe me when I went to them for help and being bullied by the principal at the school I worked at and daily stupid comments from coworkers who thought they had all the answers even when they had no idea of what my health issues were. Because I was very overweight and used a walker their comments were if she got off her fat ass and exercised she would lose weight. Or they thought that I over ate and ate tons of junk food. I actually ate very healthy fresh vegetables and fruits, I don’t like sweets and I actually ate much less than most people. Because I am diabetic and have tons of allergies I have to be extremely careful of what I eat and where it comes from. I also have severe PCOS which causes the weight gain and the diabetes. I have had to keep my diabetes in tight control which means I monitor my blood sugar closely and try to keep it in the normal range. I started doing that within the first year after I was diagnosed especially because we were trying to have a baby. I kept my A1c at a 6 for 6 years before other health issues made it go up. When I first found out about the situation with my neck/spinal cord injury I had a few of the teachers and assistants trying to compare it to or say it wasn’t worse than one ladies diverticulitis and my assistant couldn’t understand why I couldn’t come back to work because one of our students parent had a disk fixed and she went back to work less then a week later. They couldn’t grasp the fact that my spinal cord was being crushed in 4 places and nerves were being cut off. My situation was a completely different situation than little Bobby’s mom. I literally had to explain to my principal that I couldn’t wait for school to get out to have my surgery because if I waited any longer I was at risk of dying or becoming a quadriplegic on a respirator within days. I had hid my pain and other symptoms from her and most of the people I worked with because she would have tried to use it against me just like she had done to 4 other teachers she didn’t like. So yes it gets lonely and frustrating because friends get scared by life threatening health issues and especially when cancer comes up. Sorry to ramble on but you are one of the few people who understand what it’s like.

[@blublu2946]

Do you like kenworth t680 trucks usa is Very beutyfull :) is my favorite But i live in italia

[@mackenziepowell4199]

Are you watering your plants with a seringe (how ever it's spelled I can't spell well)

[@hitchinaride94]

Are you sure you don't have adrenal insufficiency? :/ Because that or brain stuff would explain a lot of your symptoms!! You can do this! Lots of love from Germany! :)

[@nataliamcbryde6966]

You should get an eye test you might need to wear glasses or something they might be able to help you

[@Not_a_snake]

Some of the footage here shows a significant neuro issue.

[@meiraloraduncan8953]

Has your sister been tested for EDS? Is it hereditary?

[@mackenziepowell4199]

Sound kind of like you're eyes are having a sever fishbowl effect

[@willowithywindle]

~❊❤❊~

[@ebonymarie7016]

You are not looking so good. You are usually all smiley. This worries me :( Please go to the hospital if you need to hun. I'm including you in my prayers.

[@kaylabarnes]

You didn't sound good at all in the Monday portion.