Vlogging with EDS: PT Bootcamp and Making Steps Forward | Week 115

[@oliviawebb4438]

My cousin uses mirrors when she goes shopping! She can’t look up or down so she has a handy little “wing mirror” so she can see what she’s grabbing (:

[@The-ii5mj]

I miss hearing about you and hope all is well!!!!🌸🍃

[@Crowcifixx]

We miss you Christina! ♥ Hope you're doing well and resting lots

[@emilyh735]

I used to work at a grocery store, and you'd be surprised by how many people we needed to help, more than just showing where an item is. If the store has a customer service desk, go speak to them when you first go in. They can usually assign someone to help you with your whole shopping trip. Plus if it is one you go to often, they will get to know you and usually assign you the same person. It can be more like shopping with a friend after three or four visits:)

[@愛-t9w]

Emily Horton Do they fine you for that? My wheelchair makes it really hard to get things and carry them with me, and this is a really interesting thing! :-)

[@emilyh735]

@@愛-t9w Where I worked (Publix in the US), it was free. Customer service was the main motto - we would also push peoples carts to their car and transfer everything to their car for free. But even if where you shop isn't that elaborate, most stores already have a system set up for helping blind shoppers - so they are used to helping with finding and getting things. I would just talk to customer service (if they have it) or a manager:)

[@LegnBacon]

Oh my. I had no idea such a condition existed. I can’t explain you’re extraordinary beauty in my eyes! Not just how bright and positive your personality is, how stunning your looks are, or how well you treat others, but how amazingly strong you are dealing with everything! Your comedy and honesty about everything is a great outlook and I’ve learned a lot about how you push through pain and life and make it enjoyable and see the bright side. You’re absolutely wonderful, I love you!!

[@SopranoFantab]

Hi Christina. I hope you're doing OK. Haven't seen recent posts of yours in a while, unless I'm missing something. Hoping all is well.

[@jamerayton50]

How are you Cristina, haven't seen a vlog for a while getting quite concerned how you are doing love to you and your fam x

[@vampybitesss]

She's still posting regularly on her Instagram She might just be overwhelmed or busy with life

[@christinetheresa7416]

Nick Von Thanks. I just discovered her videos and after binge watching, realized that this was possibly the most recent. So happy to read your response.

[@curtisbemis6640]

cant wait to see a new video i loved watching your videos , hope your doing well with your health miss you tons .

[@madiemaelou]

I hope you’re doing well! Let us know how you’re doing soon. 😊

[@juliescheie5495]

If you still want mango, buy the frozen chunks in a bag. Let them thaw. Them purée. Yum!

[@StefanieRoyMusic]

New Christina video to make my day better! Good to see you. I'm happy to see you're having good adventures with food!

[@AffordBindEquipment]

Your scarves remind me of my mom. she crocheted literally thousands of scarves for the homeless, all the way until she died at 101. Towards the end, she couldn't see very good but she had made so many, she didn't need to see. So you have a skill now that will bless a lot of people when idle time is all you have and you can't do anything else...at 101!

[@alexandrac591]

Your dad seems like such a sweetheart and I'm glad we can see him more. So happy you had all this time together!

[@sydneygordon2049]

What if you cut a piece of felt and stick it on the Velcro situation going on in the back of your head?

[@Daubenton951]

Oh it feels so good to see Christina again! Yes, I'm 100% for a series about how to conceal braces. Lately, a friend of mine suggested that lumbar braces are our WWE warrior belt. I mean, yes it's funny but really I would love to conceal them a little bit more. Christina, I love you so much I finally made it to PT today because we hear so much about Trish and it's been fantastic! My therapist is called Lauren and she had EDS patients before, which is extraordinary considering it's only 15 miles away from home with buses, trains, tubes(for EDS appointments I have a three-hour trip each time -but seeing Paris regularly is my secret treat *_* and doctors are amazing). Really, if I had not seen the benefits of PT, I would not have booked my appointment with just one of the best in my "state". Your family and you are in my prayers

[@norajung4513]

So nice to see an update. Looks like you are making great strides in you therapy. Nice to see you able to pick up seashells. Yes some might think that is easy, but for someone going through what you are, it is quite a task. Take it easy and take care of yourself.

[@Orangezebra86]

I love that your PT homework is working on everyday tasks that you will actually do instead of having exercises that you have to add into your day. So far the hardest thing for me to hide is my PICC line tubing when I am infusing on the go.

[@rachellaylee3425]

Fellow potsie I have gone through a McCormick sea salt grinder in two weeks. It borders on ridiculous. I spend about 3 minutes just twisting the dang grinder to get enough salt. I've had people taste food on my plate while not knowing how heavy I salt food and then end up chugging a whole bunch of water.

[@tamberjune]

Do you have any tips on crocheting from a lying down position? I've been in a lot of pain when I crochet sitting up and I remember in the hospital you were making sunflower after sunflower, lying down! If you have any crafting tips for people with bad backs/fused backs/neck braces etc. Please share! I'm glad your family got to be together for a couple days somewhere other than home! 💚🙌 hope you're doing well.

[@albanymtnlife]

Maybe prop pillows under your arms to help raise your arms enough to see what your doing, without stressing your arms.

[@tracymarshall8447]

You are so awesome.like you have been through alone and you have such a positive attitude. Hope you get really better really soon.wishing the best for you

[@yogabirds]

You look fabulous! Some people have problems with white potatoes, but if you don’t they actually have more potassium than bananas. Cooked radishes are full of electrolytes and taste almost like potatoes. If your doctors are okay with it,Swanson has a diamine oxidase supplement taken before meals and feeds helps to metabolize histamines. Keep up the great work!❤️💗

[@billiebluesheepie2907]

Yay! A new vlog from you. I always worry if things are going ok, but no news is good news sometimes too! I use my mobile phone all the time when shopping to look at the products that are too high or too low. I use the zoom feature lots too. It makes it easier to show people which product I want if I screenshot it, ...and it definitely gets easier to ask strangers for help the more you do it. I cried when you walked on the beach, you wanted to do that so badly when you went on your retreat, I knew you would do it one day. (I hope I can do that one day too). Billie.

[@OceanicMarauder]

I've never been this early to a video before; I'm really happy to see an update! Focus on your family, we know there have been so many changes with your family. KZbin will be here and we're happy that you can take us along for the ride.

[@noodlecatcountry]

I live in RI and not super far from Conimicut Point. My bfs mom grew up in that neighborhood! Hope you are well during all this craziness! Ahh I worked near that airport at one point.

[@jamerayton50]

Hi Christinea, hope your Ok haven't seen any of your vlogs lately x

[@nancymandle5215]

I’ve been wondering the same thing. I tried her various social media sites but I guess I’m not savvy enough to navigate them successfully. Anyone know how she is doing?

[@penelopepolinsneemeyer4757]

I’ve been watching this vlog with a huge smile on my face watching you eat! xxxxxxxxxxxx

[@jamerayton50]

Wow loverly seeing you, and you've eaten real food to, so pleased your doing abit better. Really enjoyed your vlog Take care love to you all x

[@ebonylowe6171]

I'm really happy to see you posting again. I'm hoping bootcamp will help ~~~

[@The-ii5mj]

Fantastic on the eating & your trip to the beach, standing this time!! Waves to your Dad 👋 & it's cute seeing you all together!!!!

[@poppycopper1]

I really enjoyed this video, hugs to you all xxx

[@curtisbemis6640]

awsome to see you eating and having fun with your family , hope all goes well best wish to you and your sister with your therapy !!! 🌝

[@scarecrowmax1192]

I'm so glad to see you doing well!! I hope this next week treats you kindly and you can make the progress you seek to. Lots of Love to Lauren and wishes for a speedy and easy recovery from her surgery. Lots of love to you too!!

[@ZijnShayatanica]

Even though I've been following your progress on IG, I'm so glad you're uploading the backlogged vlogs! I love seeing/listening to you & your family. I'm so glad you got to spend some more time with Lauren & your Dad -- that bonding is so important, since you get so little time at home. 💜

[@jennmcswan9900]

Gjgunbgi

[@norajung4513]

Hey girl! How are you doing? Hope everything is going well. Been thinking about you lately. In your last vlog you were trying different foods, walking and picking up seashells, which I think is great progress. I was just hoping you were having even more progress. Hope life is treating you well and update when you can we will be here.

[@sherryl1275]

Omg!..girl u just can't get a break...I'll day prayers for u an your mom an sister...

[@oturovsky558]

I love that you STILL use the clip of you spinning in the rain from one of your first few weeks in your intro!

[@lisawinters4681]

I was just thinking about how much I was missing your vlogs and then bamm there is a new vlog!!!

[@nettieclouse9750]

So great to see you and all the progress taking place!

[@decadentnight]

I don't have any central lines or tubes, I just am really in love with your style and have been since the first video I watched. Very interested a wardrobe tour!

[@Livingtheinvisiblelife]

Never enough salt. Also mango purées really well it purées into more of a liquid than say like mashed potatoes but is so so good.

[@albanymtnlife]

Have missed your vlogs, so glad to see your progress...

[@nomadnarcoleptic]

Just dropping in... hope all is well...

[@angelarosemary8945]

I LOVE the music at the last part of this video. And I think you're great. You are so positive.

[@BNHAalltheway]

Love Your videos like Your scarf glad You're able to eat food hope all goes well for You with PT hope Your sister feels well soon glad Your Mom is doing good she's a superwoman glad Your Dad could come for a visit God Bless You all

[@shawnresor498]

So good to see you smiling and feeling better! ❤

[@kimbertree]

We miss you! I hope you're doing okay. ❤❤

[@nancymandle5215]

I, too, have been concerned. I’ve checked the facebook page often and don’t see anything that might be an update. And now just having heard of jaquie beckwith’s unexpected passing april 29 (another ed’s warrior), i’m particularly concerned, Anyone out there have an update on Christina????

[@kimbertree]

@@nancymandle5215 same here. I've been checking her facebook page, and while she has posted occasionally it hasnt been much in the way of an update. I totally get that life happens, and don't want her to feel like she owes us anything. But I'm genuinely concerned. I heard about Jaq yesterday, and am completely devastated. Jaquie and christina were the reason I found out about EDS, and subsequently got my diagnosis. i hope christina is okay.

[@debiargust6596]

Are you okay? Miss seeing you.

[@kellymyers7506]

I love your scarfs and hat. Lol You have inspired me to learn how to crochet. I have EDS, POTS, asthma, severe allergies and seizures. I’ve been trying to find some kind of hobby because of my health problems I’m in bed quite often. I’ve also binge watched your channel. Your channel is awesome❤️

[@kale9591]

If you don't mind, where did you get that long sweater cardigan thing you we're wearing in the mirror clip? It looks so warm and comfortable!

[@calibateman]

Congratulations on all your achievements and progress.

[@Victoriaheartsmusic]

If your going to swim don’t do the Warwick beaches as a local they are constantly closed down because of pollution since it’s bay water.

[@Victoriaheartsmusic]

But also check out Oakland beach there is a really nice path it’s kinda short but really pretty. Also city park is nice as well they also have a nice path but it’s around 3 miles. But most of it is along the water.

[@samster4955]

Also good job on all your hard work! Especially getting those shells!

[@charliedell5094]

please can you post the link to your pillow it looks great! x

[@chronically_bqueenb]

Glad to see you back

[@MeganSmithers]

Do you remember what yarn you used for the scarf in the beginning?

[@meaganwhite7201]

When lauren said "my heart is rotten inside" i practically shouted "SAME" Once my doc said to take what he said with a grain of salt and my immediate thought was "how about a bag of salt instead" Also, about your saline infusion bag being unusable, one thing I do at night since i dont have a port is fill an empty formula bag with salt water and run it at night y-d in with my formula bag. Maybe that's something you can do to make up for the lack of infusions! My pots is so much worse when I dont run my water bag

[@jillmurphy202]

I love you sm you are amazing and help me push forward with my health issues.

[@WackyLisa]

I used to sleep through any alarm before my CPAP. Now I’m afraid to sleep through my alarm so I tend to wake up repeatedly if I have an appointment. When you go into a grocery store you can go to customer service and ask for a shopping assistant. That way you only have to ask for help once.

[@caideb5031]

You and your family should learn basic ASL or at least modified signs for what would be relevant in scenarios where you can't talk

[@likeabunnie]

It's SO HELPFUL that I know asl... Though not so much when no one around me knows what I'm signing, lol

[@jordancampbell9656]

Yay! So glad to see a new video:)

[@paco3447]

Wow. I'm amazed how courageous and positive you are. I'm an spinal CSF leaker for 4 years now (I can't stand more than an hour due excruciating headaches) and recently diagnosed of a rare Multiple Sclerosis like disease due immunologic reaction to an inguinal polypropylene mesh hernia implant (now retired), and I'm close to suicide.

[@ashleyklein9917]

I would love a series on how to hide tubes. I have had a GJ tube since November and hate going out cause it always seems so obvious. And braces would be interesting cause I avoid wearing the braces I should wear cause of how hard it is to wear clothes with them.

[@lizrayne]

Anyone know where to get that bag at 28:00 or know a video she mentions it in?? It looks like it might be one of those ones that goes around your waist and leg

[@emilyblevans4545]

I thought about knitting looms to help you out when your in the hospital. I use them to strengthen my eyes and my fine motor skills.

[@TaylaPotayta]

I have to use the cart to help me in the grocery store too! And I’m surprised Lauren was so helpful while you were gagging

[@darkbluematter1753]

Yaaaaaaaaaay!!! Missed you!

[@brittanyspringmeier6239]

Ugh, your mast cell issues and dilemmas are so relatable. The struggle is real.

[@livediebe]

you push the grocery cart like me! you hold on to the metal of the child seat instead of the actual handle. my mom always says that's weird.

[@hannahprentice1939]

I miss your videos so much! I really hope you’re doing ok!

[@NorseButterfly]

My neurosurgeon has me in pt to improve my sagital balance and posture. Then, as soon as winter releases its snowy hand on the east coast, I'll be seeing Dr. Henderson in Maryland to get my "second opinion" as requested by my neurosurgeon. I really don't mind the snow, I just can't afford to get stuck there for any length of time because of icing and blizzard condition🤷‍♀️. Until then, I'm working with my cardiologist. The newest dx is cardiomyopathy. I have a follow up from my 24 hour holter monitor the first Monday in March.

[@The-ii5mj]

We miss you! Tge good, the bad& the PSTD. PLZ update up soon. xo x o

[@loiscassels8966]

I’m the same way with the alarm. Every time I wake up I calculate the number of hours (or minutes) I have left to sleep.

[@jessica45qt1]

Christina do you recommend any doctors that are familiar with EDS but deals with Slipped Discs as I have 3 slipped discs I need to get a 2nd look at them and fixed as well.

[@jessica45qt1]

Can be either Maryland or Boston Mass area. I don't like anyone in NC as they can be connected to Duke and they're not a good match for someone with EDS.

[@jessica45qt1]

My email is [e-mail]

[@13meli55a]

Are you part of the New England EDS group? m.facebook.com/groups/211190148990266?ref=share

[@jessica45qt1]

@@13meli55a No, I don't live in Boston or anywhere near there But I do visit Boston a lot for past co-workers and friends and docs

[@life-gs7zr]

Don't worry it's ok to ask for help sometimes I get indepence but sometimes everyone needs help

[@MamaWithAFro]

I wonder if they make any sort of sticker cover to decorate your braces?

[@ezraelizabethoxton938]

Mama With A Fro I’m sure there would be an Etsy somewhere with various decals

[@愛-t9w]

Before my fusion, the plastic my braces were made of had patterns. It was super cool!

[@AD-ip5xy]

Love you Christina!

[@EvieSmith-ix9mh]

I have EDS, and I was wondering about your ring sprints, specifically the one for your thumb. I have issues with my thumbs, and was wondering if you remember where you got them.

[@kittyscat8905]

Amy lee fisher has eds and uses the same finger splints. She does a video with the splints and gives good advice on them if you choose to get the. Like sizing info

[@愛-t9w]

Amy Lee Fisher is a munchie who isn’t consistent with her rings.

[@syp330]

I hope you are doing well. You are such an inspiration to so many Eds patients. You have such a positive attitude about everything even through the difficult times.

[@Mycraftylife]

Miss you her at the tube! hope you are fine!

[@tuvalu118]

Hi Christina, hope you are doing well. I`ve often thought of you from the North of Germany. My name is also Christina. Could you please tell me if you are planing to do videos again? I want to declutter my signings. Wish you all the best.

[@kyleeblack1052]

@Christina - how come you use oxygen at night time?

[@chloemahr]

Miss you

[@NRGvideoproduction]

love you, girl!!!

[@samster4955]

I mean if you could help me hide my mental illnesses lol they make me stronger even when they knock me down. Mrs.maisel is amazing it's my favorite! There's also leggings with a blanket feel texture on the inside.

[@MyrteVR]

Hi! I have a question, what valves do you have for your shunt? I recently switched from a VA shunt to an lp shunt to my plural cavity and I have issues still. My VA used to have 2 valves, my lpl only has one, but Im still learning about lp shunts.

[@sarahserenity3872]

Where did you go? I miss your vids ❤

[@eFoobar]

Interesting to find a keyboard (music) at a doctor's office (@ 2:05).... Hmm?

[@ZijnShayatanica]

It's probably for hand therapy. Piano, knitting, & other activities are fun ways to develop coordination & range of motion. ☺️

[@AffordBindEquipment]

Haven't seen a vid in a while. Hope everything is ok...

[@sarahwithstars]

My girl has character and has had some updates she is still acclimatising to...I relate to you and the house but couldn't stand a lack of shower Vs bath in comparison xxxxx so much love to you four- you know where I am on the socials if you need anything, pharmaceutical or otherwise xxxxx

[@MsSwenSwen]

Omg what is the word?! It’s driving me crazy lol. I know what you were trying to say but I can’t think of it either. It’s basically like terrain but not sure

[@lorinewcomb4717]

Yes there are different strains of probiotics and some are better for potential sibo.

[@casinochick100]

do you know any good videos or website for very beginners on crochet ?

[@samiam6801]

What audiobook are you listening to and what genres/books/series are your favourites?

[@maddiechumley2335]

I think the word you were looking for is terrains :)

[@sierrahill6216]

I love your Frey life merch lol

[@astererratum6546]

i just went to the cardiologist yesterday and they said i might have eds. ill still have to go in for more testing. i dont have insurance and i dont have a job. my parents are paying for everything even though they dont have money either. do you have any suggestions for financial support? i love to see your videoes. your really inspiring. (^^♪

[@jilliangreen8435]

I hope you are ok...havent seen any posts for months:(

[@ebonylowe6171]

Christina have you tried CBD oil ? Not sure if its legal there yet. I ask because it helps a ton with energy.

[@westberry1]

Ebony Lowe CBD oil is not illegal. It is the Cannabis oil medical marijuana. CBD oil is sell every where over the counter in health food stores.

[@ebonylowe6171]

@@westberry1 I know I'm talking about brands like hempworx.

[@rachsl]

Love to the fry life hat =)

[@chelseawiseman7205]

What do you take for your mass cell ? I was recently diagnosed and I take cromolyn for it. I am a fellow zebra

[@ZijnShayatanica]

If I'm not mistaken, I think she has Cromolyn as a medication & also inhaler/nebulizer. She's also had a course of Xolair injections.