Vlogging with EDS: Beach Adventures, Dysautonomia Disasters, and My New Rims

[@nowayitsjennie]

Just a little anecdote relating to errors in medical records - I was signing up for a new GP and for whatever reason they gave me a printout of my records. I had a look over it and realised that instead of “allergic to codeine” they had written “allergic to cocaine”! And this had been on my record for about 5 years. No idea what the doctors must have thought when they saw that. To be fair, I might be allergic to cocaine, but I wouldn’t know because I’ve never had it!

[@brisouza8880]

This made me chuckle... I got weird looks 😂

[@faeriesmak]

Oh wow! Now that's a serious typo! When we read through my late Father's medical records we actually found out that one of the times that he was rushed to the er by ambulance he actually stopped breathing and his heart stopped but they managed to revive him. The hospital never mentioned that he had pretty much died! You would think that something that like might be important information to pass along.

[@texasdude1984]

Thanks for the Texas shoutout! 85 is when it begins to get warm here, and when the humidity is up, that combination does feel good. We feel your pain :).

[@meganer12]

Ugh, I’m from PA and this year we haven’t really had spring either. Heat and humidity mean I am basically dead bc the evil migraine fairy comes and smacks me in the face, so I agree with you so much. Love your glibness about a future husband needing to deal with all the tubes and everything. Your sense of humor always makes me smile, even when I’m in a bad mood.

[@ryuisuki]

Everything you said about summer is relatable. I go through Scottish winters like 'please summer hurry up and come back!' then summer gets here and I'm like 'ew get away from me'. Body temperature regulation is hard.

[@BeverleyButterfly]

I’m so glad you have managed to get a little more independence honey that’s so exciting xx

[@billiebluesheepie2907]

I HAVE THOSE RIMS!!!!! I had to have them close mounted as my thumbs kept getting trapped... and every time got dislocated - I know, you guessed that! - Billie

[@jamerayton50]

I don't like heat either, I suffer with fibromyalgia and cronic fatigue etc , and I do struggle in the heat, I think your such an inspiration to everyone pleased you wheelchair is easier to push sending love from the uk x

[@sfie9388]

I would recommend you to look up 'service dog Colt' (it is a KZbin channel) and Janaye (Colt's owner) has a smart drive and she has a great video up on her channel about her wheelchair and she gives a lot of information about the smart drive 😉

[@jamielenoir4618]

As a Texan, I laughed out loud when you talked weather ..... Thanks for the chuckle. Hot weather really is the worst - totally agree with you on that. So glad you're feeling better

[@Zombiegrrl99]

I now know what to ask my Dr in regard to breathing problems ... I do the same "buffering" thing and I've never known anyone else who did. Thank you for sharing! Also, I shared your KZbin on my private FB.

[@allie4680]

Jaquie has smart drive and I believe she found waterproof wheels since she lives in a rainy place too! So if u do ever decide to go for smart drive, that’s an option!

[@hollywittenberg7031]

Allie That is a really good idea.

[@love2cats]

I'm so excited that you're opening your etsy shop again!!!!! Please don't over do it though! Your Mom looked beautiful soaking up that sunshine. I'm dealing with so much now, but watching your videos inspire me to keep trying. You are doing important work. Doesn't feel weird and wonderful to know you're helping so many people in so many ways? Thank you!

[@nettieclouse9750]

Always a great video! Woooo I do that air gasping thing too... Those SCF leaks do need checked. I'm in the same boat trying to figure that out. Boo oooo no on the shoulder stuff! So sorry sweetie... So glad your new rims are working so well for you! Always look forward to the next weekly video! Much love my zebra friend!

[@LILFOOT1112]

I know this video is 2 years ago but I totally understand about you not wanting shoulder surgery I have had 4 already on my rights shoulder and heading for a 5th I was born with out shoulder sockets especially my right shoulder and now my left shoulder is worn out

[@AdmiralJellypants626]

Christina! I'm excited to hear that you are possibly going to start up your etsy shop again! Have you considered selling some of your cute crochet creations or paintings? I'd love to buy something from your shop and help support your ability to spread awareness of EDS

[@kf5jpq]

Lol 85 degrees is winter here in texas. Anyway glad you're doing ok, i think your excepting applications for a husband plug was great and i think any man out there would be lucky to have a sweetheart like you!

[@NZKiwi87]

Hey lady! Newly diagnosed zebra from New Zealand here, I've been watching you for a few months now & love the glimpse into your life :) You're busy and energy is limited so no response required - just letting you know how far your story has reached :) Kia kaha zebra!

[@savyy4minnie]

We're like Olaf! We like the idea of summer.. but it really tries to kill us 😂

[@maisiebryenton3163]

When the ad before your video is about neurological conditions! Go Christina!

[@faeriesmak]

I don't do well in the heat either and I only have arthritis and generalized anxiety disorder! I can't imagine how badly it must affect your every day life. It's nice seeing you get out and just looking like you are feeling better and more yourself. I hope that you have a great week!

[@nessbailey7931]

Yes to the New England and No spring thing! I live in Maine and itgets wet and muddy, but really hot, no spring!

[@Victoriaheartsmusic]

city park its amazing. it lists online that it is closed at 4 but its really sun down. the first mile of the trail has alot of hills as a warning in the chair. though it is my favorite part of the trail cause its all along the water and really pretty.

[@missywoford1809]

I am the same with the heat! Everyone thinks I'm weird/a wimp but ugh i can't stand it! it makes me feel dizzy and faint and it triggers migraines. I decided this year I just want to reverse-hibernate. I will sleep in my air-conditioned house 'till the weather is cool, lol. I wish you many cool breezes!!

[@mackenziepowell4199]

I have been waiting all day for this! And I have apprently apenged my rotator cuff, so there's that but omg I can't even imagine how much medical supplies you have I definitely need to help organize stuff ( being a home orgaizer at an affordable price is my back up plan)

[@sarinadively3139]

"Taking applications." 😂

[@Not_a_snake]

Nope. Hate summer. Hate the heat, the bright sun, all of it. Pass out city. Smart drive works easier on a rigid chair, this is true. Honestly, I’ve learned rigid chairs are lighter and fold down better then folding chairs. Surprisingly. I have a folding chair, but my next chair will be rigid.

[@Mytitus2journey]

What do you think sleeping Christine going to think of the oxygen mask? I also hate summer. I'll see people mowing or running at noon and I think that they are crazy! It dawned on me last summer that their bodies probably don't feel like mine when they get hot! Thanks for the info on the wheelchair! We're looking at getting Caro a custom chair.

[@iceeyes4478]

Awesome video. Yeah, 80 something degrees is obscenely hot. I live on the east coast of Newfoundland and we are lucky to get 24-25 degrees Celsius in the summer. I can't imagine 30 plus degrees. Watching the nurse put in your needle was pretty wild. Does that hurt? Also, whatever man you allow in your life will be lucky to have you, you're a pretty awesome person :)

[@sixmercer2504]

Hey! I just want to mention that I have wheel assist on my wheelchair and it's incredible! I live in Colorado and I have to ask my wheelchair team if my wheels can or can not get wet, winter is right around the corner and that would be awful! The type of wheels I use are Twion Wheels. I don't know how you do it without them. As they were being customized I was loaned a wheelchair with regular wheels and just getting over the doorway humps is difficult for me. My elbows are actually good, but my wrists, fingers and shoulders are a mess, as is my neck which is very soon to be fused. Hmmmm. I'm glad you posted this. I will need to find out about my Twion wheels. The Smart Drive is really kind of dangerous, if the wheel catches on a crack in the sidewalk it can easily get knocked into that position. And the other larger ones are really heavy. The Twion wheels are only about 10 pounds each. And they come off and on the frame and the whole frame folds up which is equally as lightweight. It's easy to break down and fold up. So, I just wanted to give you something to think about, even if you go to a wheelchair, mobility aid place and try all the different types of options available for you. It's no harm no foul to give the different ones a try. It helped me a lot. I was convinced I wanted the Smart Drive until I tried it. I definitely didn't think I'd end up liking the Twion wheels more than the other two wheel assist options they offered me but they showed they were the lightest and the safest and I'm very happy with my choice. I hope this helps.

[@kiwatts]

Chronically Jackie has EDS and many other things. She uses a smartdrive that can go in the car . The seat back folds forward and the wheels come off. Check out her wheelchair playlist. She originally had power assist and switched to smartdrive due to rain issues. Her playlist starts with powerassist which shows how the chair itself collapses and halfway through the playlist she gets the smartdrive and she explains and shows how to use it. kzbin.info/aero/PLrAi_F1oEjCMxwq35jtx-L5ivk67ElCI9

[@judesmum1]

Oh my gosh! I have the same problem with forgetting to breath. I wasn’t sure if it was normal or not cause I couldn’t really find anything about it online. Now I feel like I should really talk to my doctor about it.

[@xirisx1988]

I'm the same with summer. I feel a nagging pain in my muscles.

[@readingwithwrin]

Hi Christina, I'm currently in the process of trying to get a smart drive for my wheelchair (it's not collapsible). The one thing my wheelchair guy said to be aware of with this one, is that is very hard to get insurance to pay for it, and it takes a very well written letter to get it.

[@shekeyra100]

i don't get why some say smartdrive is heavy or cant get wet thats not true The Smart Drive MX2+ Push Tracker is lightweight and easy to install. The system weighs only 12.5 lbs (5.7 kg) and simply attaches on the back of the chair. It can be fit on essentially any make and type of wheelchair, including folding, tilt-in space, one-arm drive and standing.It moves with you and it’s so lightweight, you don’t even know it’s there. You can spin in place, be in a wheelie, or hop off curbs. It is compatible with your active lifestyle.

[@NorseButterfly]

You are like my living ray of sunshine every Monday 💜 I'm getting ready for my fist colonoscopy/endoscopy on Wednesday. My swallow study showed that my duodenum prolapsed on top of having severe dysphasia. I'm just ready for some fluids and nutrition!

[@faeriesmak]

Good luck! I hope that your procedure goes well.

[@anikabaddeleyrollingbackwa7341]

Have been waiting all day for you to show up. The book you have is in audio format too.

[@533134]

Christina, you’re Olaf!!

[@LazyGirlOtaku]

I have EDS too (you liked my EDS awareness month post on instagram ;D) I kept dislocating my shoulder and the pain got really bad. In 2012 I had stabilization surgery. Now in 2018 here I am holding my shoulder in the socket while I sleep. Any amount of relaxing lets it just slip right out again. Like you said: Shoulder stabilization surgery is very difficult long term. I was good for the first few years after surgery but the pain from the surgery was so intense I would never wish it on my worst enemy and the results were not long term. Such is the life of an EDS patient :/

[@Endijen]

Hi Christina, I have central sleep apnea where I don't stop breathing altogether but I just slow down my breathing to the point where my oxygen level goes down and then my brain says WAKE UP! Which makes me breathe deeply and my oxygen level goes up. This happens dozens of time per hour. I do sleep much better with my CPAP machine. It was awful when we lost power in March and I couldn't use it. I live on the South Shore of MA. Anyway, I wanted to ask you what is the test for EDS called? I was born with Spina Bifida, had hydrocephalus, have a tethered cord and Chiari Malformation. I understand Chiari patients also can have EDS and I do have hypermobile joints. Yes...I can put my palms flat on the floor. 😉 Love your channel! 💖 Blessings, Jen

[@sarah_chalk]

I just saw my Orthotist at Hanger a few hours ago!! He is *the BEST*!!! I’m so glad that you liked your office too! I can’t believe that they didn’t tell you about your shoulder! Yay for the new rims finally coming in! And yay for the beach!!! (Even if it did mean Lauren complaining that she didn’t get to go, too. 😂 Should’ve gone to PT 🤷🏻‍♀️😂🤣😂)

[@decadentnight]

I'm a Texan and 85 is uncomfortable when its sunny! The only difference in some areas of Texas is that its very very humid. Which makes it feel like your melting inside a scorching hot oven.

[@sunglassesgirl]

Alice Ingham -- Thank you for saying this! =) I was born and raised in Florida but moved 'up north' (somewhere relatively close to where Christina lives) for work... before my career finally came to its painful end... and I won't let people get away with 'complaining' about "how hot it is" up here. My 'go to' response is to laugh and jokingly tell them that they're not allowed to 'complain' that 'it's hot' _until_ it's at least 95 F and 95% humidity... then I usually mention what my computer's weather app told me the weather (in terms of temperature and humidity) is going to be for the day. (Now that I live 'up north' I have to check the weather before leaving my apartment... it's that or risk being super uncomfortable and wasting lots of energy trying to ignore the discomfort... thanks Sensory Processing Disorder...) I grew up 20 minutes from the Gulf Coast and I competed my university studies at UF (which is located in north central Florida) -- temperature-wise, it was actually a few degrees hotter in the summer in Gainesville BUT (for me) the dry heat was much more tolerable than slightly-cooler wet, sticky heat that I grew up with. ... and just in case anyone in the Northeastern United States is wondering, my computer's weather app is saying that (in my location) we're at about 50% humidity. =D

[@decadentnight]

Sunglasses Girl yeah I definitely get that I live on Galveston bay

[@navygirl54]

I make things with plastic snaps. I would never use metal for fear of rust

[@kittenlofi420]

Gotta love MassHealth, always making things more difficult than they need to be. Have you had any luck going to a pain specialist and neurologist? I went to a TMJ specialist at tufts and they recommended it, but I don't want to make the trip from Cape Cod to Boston for them to suggest mindful meditation lol

[@alexandrac591]

Looks like Nantasket!

[@ninamayer9254]

I also hate summer! But what I hate most is that dressings never stay on because of the sweating in the heat... Does anyone know how to make sterile dressings stay on???

[@corrindac7416]

Smart Drive is waterproof.

[@chroniclesofabrokenperson2600]

You mentioned running a low grade fever. My temp has been between 97.3 - 99.7 for several weeks. Up and down throughout the day. I have GHSD, MCAS, and some other chronic illnesses. Do you know which of your chronic illnesses contribute to your low grade fever?

[@tameibex]

I have this thing whenever i go to bed and try and sleep, its like i stop breathing and then i suddenly gasp for air, and because im so tired sleep paralysis comes over me and my heart is beating really fast. I went to the doctor a few times about this, first, she thought it was just congestion, then she thought it was panic attacks . But its kinda weird that it only happens at night?

[@faeriesmak]

I had something like that when I was in college and it was SEVERE anxiety. It sounds a lot like what you are describing..I had palpitations as well. I went to doctors and they all thought that I had acid reflux. It eventually went away on its own and I didnt figure out what the issue had been for years. It only happened when I was trying to go to sleep and it was so bad sometimes that I was not really getting any sleep. I hope that you can find an answer soon.

[@kenzie-anne]

I dont even remember how I found you.. I dont have EDS but I do have Lupus which is a connective tissue disease, so I do run into some of the same issues as you do. I have more organ involvement though. So my kidneys are shot, gonna need a transplant eventually, Lupus has affected my cognitive abilities as well as, stomach and digestive issues, hair loss ect.. I have severe arthritis, which thank you btw, I asked my rheumatologist about silver ring splints to help stabilize my hands and he gave me a script and referral to a physio doc so I can get fitted.! im glad to see you doing better, I too dont do well in the heat and people with lupus also have photosensitivity so ya we are vampires as well! have a great week!

[@decadentnight]

The anatomical art is by Alex Grey who is amazing!

[@NRGvideoproduction]

you are such an inspiration!

[@Alex-ul6le]

WOAH I have a similar weird pathetic breathing thing during day and night. I only notice it when my body forces me to gasp in some air quickly. I keep forgetting to mention it to a doctor but it's interesting to know someone else experiences similar. P.S. You were right a year and a half ago when you commented on my instagram post, I have hEDS.

[@tamberjune]

When you were doing your outtro, "I'm here every week!" Christina, our lovely comedienne, that was cute! Adjusting braces =// i need to see about a Hanger Clinic here my mom got AFOs and she doesn't fall as much (when she puts them on...! 😅). The ankle brace you got to help with dropfoot. What is is called if you remember? Idr which vlog it was in I am pretty sure you could watercolor in the paper as well. Or doodle! Whatever you fancy. You are lovely and I am praying for your sister as well. I've seen my older sister grow into this disease (hers presented a while after mine did... She had knee problems but that was it. now, seeing the toll it's taking on each other...it's a lot to handle. I am sure you guys get that. She's been the adventurer, but Science isn't quite there yet. We still have hope, despite everything. My sister wears her purple benadryl locket you made every day!! 76°F is now "warm" for me. Crazy. #dysautonomiasucks I think I am gonna do an EDS awareness month video/blog(?) I need to find a good app and export my current files. Oof. So much to do. I am glad to see you getting around much more easily! That is awesome! So look forward to seeing you next week!!

[@Jlynne3323]

Be very careful approaching shoulder stabilization surgery fellow EDSers. I am 6 months into healing from a surgery to do so and it literally opened such a can of worms and I’m in more pain than before (and it wasn’t due to the surgeon, it was done at the Mayo Clinic with some of the best...it’s due to the chain reaction EDS brings to our anatomy). Christina, do you have a detailed video on your Dysautonomia and all the related symptoms, how to go about getting diagnosed and treatment? I’ve always been told my extremely low blood pressure, erratic heart rate, digestion issues, insomnia etc. we’re all due to my EDS, I guess I didn’t realize there was another name/underlying condition related to the EDS, but it’s own thing entirely. TIA! :)

[@domy6827]

what about a gown with cloth ties?

[@billiebluesheepie2907]

I got so excited about the rims I stopped the vlog but, but, but, you need to get a therapist to say that your chair is much too heavy for you, and IT FOLDS. A lightweight rigid chair is sooo much easier to push, it’s rigid...so doesn’t flex if you go over a level change or stone so it supports you much better = less pain and pops. They could change out your cushion to a jay lite with a gel bag inside the cover and half the weight, and you can get much lighter tyres with tubes and a third of the weight, the smart drive would be the heaviest part. The best bit? Everything broken down fits on a standard car seat and the car seatbelt holds it all in :) (...okay, the smart drive would have to go in the foot well!). You would be more independent, it would suit your condition better, how can your insurance turn you down? - Billie (and not saying how many *cough-years* it took to get my chair!)

[@shekeyra100]

have you checked out chronically jaquie and her chair that she has done amazing

[@nikki10114]

I see dr chopra in rhode island

[@chemicalbreath]

I would apply for the future husband spot. Some deal breakers are I am 22 years older than you, I live in Portland Oregon. A couple of things about me that might help with my application is I am a born again christian and I believe chivalry is not dead. I enjoy helping others maybe to much. Finally what people might say is your worst look it is your best look to me.

[@silverbroom02]

Omg I have the same breathing thing!! Must be dysautonomia nonsense?

[@533134]

I can’t handle a ton of heat either .....

[@Hbh250]

What is dropping things frequently a symptom of? I literally cannot stop dropping things and they said that it could be rheumatoid arthritis but my X-rays are clear and I def don’t have rheumatoid

[@sunglassesgirl]

My university degree is actually a Bachelor of Science degree with a major in Mechanical Engineering and a minor in Biomechanics... the 'short' answer to your question is 'a lot of things' BUT in reality, there's really only two major things at play in this case: (1) MECHANICAL (i.e. bones, muscles, joints, connective tissue, etc) or (2) ELECTRICAL (AKA your nervous system). So, I'll put my 'engineer hat' on for a moment and pose some questions whose answers might lead you to your answer... of course, ALWAYS have a trusted health care professional confirm any self-diagnosing that you may be forced to do with an official diagnosis. With that said... -- Are any of your blood work numbers wonky? Electrolytes affect the 'signals' sent by your brain telling your hand to hold on to objects... it's kind of hard for that to happen if your blood chemistry isn't quite right. -- Are you dehydrated and/or dealing with malnutrition? Pretty much the same reasons as above... -- Were the x-rays that ruled out RA done on your hands? If bones, muscles, ligaments, and tendons are not in the "right spot", you might be essentially working against yourself when your try to pick things up -- think along the lines of tripping over your shoelaces all day long... -- Are your elbows, shoulders, or anything else with your arms "messed up" from anything in the past? Overuse injuries, acute injuries that never healed correctly, something that's more-or-less premantenly subluxed or (completely) dislocated? Pretty much the same reason as above... - Is there pain, especially muscular pain, involved? To me, that would seem like 'something' (bone / muscle / connective tissue-wise) might be in the "wrong" place (from a mechanical standpoint)... which might be relatively easily fiable... I hope this helps get you closer to figuring out "what's wrong" with your hands. =)

[@Lifelungsandlaughter]

Have you ever had a full sleep study with transcutaneous Co2 monitoring and morning blood gasses? Was the oxygen recommended by a doctor who specialises in respiratory support? It doesn't sound like your breathing problems would respond to oxygen therapy because it's a problem with the mechanism of breathing (Eg, how well you breathe in and out.) rather than how well your body deals with the oxygen once you have breathed it in. Also, morning headaches are normally caused by raised co2 levels, rather than low oxygen levels, and adding in oxygen overnight, especially at such a high flow rate, is more likely to cause you to retain co2 and that will give you a terrible headache. Plus there's the logistics of it, a mask like the one you described takes 15 litres of oxygen per minute, you won't get an oxygen concerntrator to give you that much oxygen, so you will have to have cylinders and that will mean you will have to wake up numerous times per night to change the cylinder over. Obviously I don't know everything about your condition etc, but they are questions that you might want to be asking!

[@maddiechumley2335]

I live in AZ and it hit 104 today... I also am horrible about fainting in heat and spend all of summer indoors.

[@poppycopper1]

Hugs xxx

[@anne-marijansson4980]

❤

[@stephaniedunn5060]

Do you have a P.O Box? So we can send you things?

[@dominikam9741]

I dont know if you are able to do this, but: it will be much better if you do shorter films, but maybe twice a week. I'm a standard KZbin user and it's sometimes hard to come back to film which is 30min long ;) Hope you understand me. I think shorter films are a way to gain more audience, your content is great but hard to watch because of length

[@sarahyoung8760]

1st

[@loiscassels8966]

I’m a notebook/journal list keeper, too. I love stationery! I have more journals than I can use, but I have to hoard them all because they’re so beautiful. Glad you had a better week!❤️

[@rae1957tn]

A man would be lucky to have you as a wife. So guys she’s taking applications! 👍 if you guys want to see a real man go to The frey Life channel Peter is a real man